Strong can be deceiving

I'm Back!

2011-01-08T06:57:00.007-10:00

Wow, it's been 2 years and (almost) 1 month since I last posted on my blog. I was reading another blog and realized I'd like to be back on the blogwaggon!

I originally started this blog as a way to deal with my ever breaking heart. Mia almost didn't live through birth. She suffered a brain injury due to the lack of oxygen. She's globally delayed, hypotonic, epileptic, asthmatic, and uses a diagnosis of 'cerebral palsy' to obtain services. In 2008 I moved from Hawaii to So. CA. A move that I was excited about since my family is in So. CA. It turned out to be a much harder move than I expected. First off, checking out of Tripler Army Medical Center was VERY difficult for me. Mia had been going there at least weekly for nearly 2 years. That was her first 'home' for the first month of her life. When I checked her out of TAMC I felt as though I was leaving her there. It was odd. Then we got to CA and obtaining services for her was stressful, frustrating, overwhelming and took forever. Mia wasn't making great progress developmentally and it became too difficult for me to cheer on my other bloggin mommas whose children were making tremendous strides. I took time off of the blog and eventually tried to blog again, but just wasn't 'feelin' it.

I now decided to blog again, not only as a way to express feelings, but as a way to track events in our life. It's fun to look back and see where we've been, what we've done and most importantly the awesome progress that my little Mia has made. My heart still breaks, but as a lot of SN mamas said it gets better in time. I still break down and cry, wonder what her future will be like, but it doesn't happen very often. I am more at peace and I do know God has a plan. God has answered so many prayers for Mia and Mia has touched so many hearts.

Cerebral Palsy

2008-12-12T13:01:00.004-10:00

Mia has been a very busy girl with various appointments this week. The first appointment was her hearing test, she passed! She has to go back to check one more thing, but the equipment was broken, otherwise her hearing is where it should be for her age. She had her speech evaluation and that went good. She doesn't speak really, but her receptive language is very high. She is learning more signs to help communicate, but she is also starting to attempt to repeat words when you ask her too! The first one was 'NONE'. I was out shopping with her and I am addicted to buying shoes for her, so as usual we stopped by the toddler shoe section, they didn't have any that I liked. I proceeded to look in the women's section for myself. Mia pointed at a pair of shoes and lifted her foot (she wanted to try on shoes because she now is addicted to shoes). I said "oh no, these are too big, this is my size. We looked for shoes for you and they had none." Then she looked at me and said 'NONE" and I said "Did you say NONE?" and again she repeated NONE! It was great. During the ST eval she asked her what the dog says and Mia panted and the ST said good and how about woof woof? And Mia tried to say woof! She will be going at least 2 times a week for ST!!
We also will be having a teacher 2 times a week at the house. Her PT is two times a week and she has an T eval next week. Today was her neurology appointment. This was the first time meeting this neuro. Apparently she was unable to review Mia's medical records prior to our visit because of an input error. While we were at the appointment she figured out the error and reviewed the neuro report and MRI information. She said 'Mia has cerebral palsy. I can say that with certainty.' She went on to explain why she said it. I didn't even cry. I just listed and had no emotion. I mean the CP term has been thrown at me since she was 1 day old. I have been told most recently in September by her new ped that Mia has CP and then after he read all her medical records he came back and apologized saying he would have to agree with her others doctors and not give her the DX. Of course we use the CP dx all of the time, for therapies and equipment. The neuro said that 50% have CP kids have cognitive issues/delays, but she doesn't see Mia fitting into the the 50% that have cognitive issues/delays. She also said, Mia is going to walk, it's just a matter of time. She mentioned Mia was a bit tight, which was a shock to me. Nobody has mentioned her being tight since her NICU days. She is pretty loose and hypotonic. So, I am sitting here asking myself "Have I finally accepted it? Am I okay with the label being attached to my baby?" Or is it that I am so far in denial after being told before that she has CP by more than one doctor and then having that doctor come back and change is mind? I am just not sure. I do know that I have accepted that Mia would always use the CP label for services and I was comfortable with it. I know that the label isn't going to change who she is and what she is doing, I love her even more than I could ever have imagined.
For now I am going to roll with it and see how I feel. I know even accepting a CP dx doesn't mean that I am always going to be 'ok' with it. I know some days I will laugh and be thankful and other days I will cry and think 'wow this really f'ing sucks!'
I am happy to say on a family note that we (mike, mia, tara and the dog) are going on vacation to Lake Tahoe for Christmas. DH is trying hard to make up for his selfishness that went on for 7 months. He was present with me at the appointment today and is napping with Mia right now.

Hearing Your Silence by Donald Robin, Ph.D.,CCC-SLP

2008-12-03T06:09:00.003-10:00

Hearing Your Silence

by Donald Robin, Ph.D., CCC-SLP
We don't understand

when we hear your silence

We cant see behind your frustrated eyes

when you plead for our attention

We are unable to feel your awkwardness

when you try to speak and the wrong sounds emerge

We cannot be inside you to will your tongue to move

when it struggles to find the roof of your mouth

We don't understand the fear that consumes you

when you are on the playground when you should be having fun

We are not privy to your brain that creates a world of words

only to have your muscles stop their meaning

We do not hear your mind communicating freely

only to have us look quizzically and ask for repetition

We cannot sense your joy at moments of clarity

only to have it rapidly disappear again and again

We do know who you are

when you look into our eyes

We can hold you tightly

when your fists clench and tears fill your vision

We will struggle with you each day and night

when you practice your speech sounds with great deliberation

We are proud of your trying

when we might just give up

We share with you your pain

when your mouth is tired and slow

You know that we will love you

when you are little and when you grow

You know that we will be there for you

when all seems dark and cold

You know that you are special and what you want to say

You know you are our children and who you are each day

You know your world is full and how to find the way

You know we hear your silence

You know, we hear your silence

You know we hear your silence

(July, 2004 on the occasion of the First National Apraxia-KIDS Parent Conference)

Mia Update!!! She 27 months old!

2008-11-13T10:12:00.005-10:00

Mia is 27 months old. She weighs in at 24 pounds 6 ounces and stands 34 1/4 inches tall!! She still doesn't talk or walk, but she's cute as can be. Very smart too! She has a new pediatrician who is so wonderful. When we first met him he was insisting she had CP. I explained to him my theory and why the doctors in Hawaii hadn't given her that DX. He was very nice and said he wasn't dx'ing her, but figured she would get that dx and for therapy we should use it. I was fine with it. I left all of her medical records with him and we just met with him on Tuesday! He said: "I have to tell you I need to go back on what I said about CP. I think you are right and after reading what the other doctors say she just doesn't have the normal motor functions on a person with CP!" I was in tears, I know it's just a label and she is who she is, but as long as I can stay away from the 'label' the easier time I have coping. I wish she had a true DX because I want so badly to 'connect' with someone. The ladies from the old BBC are GREAT but I haven't been so GREAT back to them. After all, I left everyone for 4 months! Mia will soon start therapy again but I am no longer into tons of therapy. I see Mia makes progress at her own pace, therapy is a good tool, but double therapies aren't for her. I am looking into more aqua therapy and hippo therapy.

I turned the big Three O in September. My mom threw me a party and had karaoke. Mia was at the party and at the end of the night she insisted she sung. Remember, she doesn't talk. Well, she went up there with more stage presence than the professionals, she picked up the mic, looked at the crowd and blabbed, laughed and had a blast!! My best birthday present!!!!

What a Day

2008-07-10T19:57:00.005-10:00

It's kind of funny. I started this blog to deal with the emotions of a special needs child. I've actually been using it for everything else and not dealing with my feelings about things with Mia. It's not that it doesn't still break my heart to see Mia struggle, to know that is she almost 2 and isn't walking and doesn't have a vocabulary of a 2 year old (she has one word though...MOM)! I am so emotionally drained right now that I cannot focus on those pains.
I was thinking my therapy was yesterday, but I realized after my post the other day that my session was today. Luckily my listening ear (Carol) took over for my MFT and helped me make it through the day yesterday. I pretty much cried the entire session today. It is amazing how great I feel after therapy. I don't know if it is from all of the crying because I cry all the time to myself, but I think it is a combination of actually saying the feelings out loud and crying. I blog about a lot of the same stuff, but I don't get as detailed. I am not ready to let the entire world in on my life : ) Right after therapy I find myself feeling good and bad, good that I got it out, bad on what was left unsaid/unresolved. The first week after therapy has gone pretty good but it's the second week that kills me. I realized part of the problem is the first week I take her advice and implement it in my life, by the second week I revert back to old habits and I crumble. My goal is to do what she says for the entire 2 weeks. I know and she knows it is easier said than done, but it is for my own emotional well being. The next 2 weeks of sticking with her advice is going to be tough and have some twists to it.
Aside from therapy, today was not a good day. I went to therapy and rushed home to take Mia to her therapy. I get to the hospital (25 minutes away) and they look at me like I am crazy, well, more like, uh what are you doing here? Come to find out, today was Mia's OT at home not the hospital. I got confused because Mia had home OT already this week, but this was a make up for last week. We rushed back and made it home quickly but her OT didn't wait for us. She said she couldn't wait. I was a bit annoyed by this for a few reasons, she has changed Mia's therapy time constantly and I just roll with it, the first session she showed up almost 20 minutes late and didn't even call and she is always a few minutes late. Mia has an hour of OT with her, it wasn't like she had another appointment that conflicted.
I had some shopping to do, well, I didn't HAVE to shop, but that is my other form of therapy that Mia and I do on a daily basis. I go to TJ Maxx and I was there almost an hour, I was trying on clothes and just browsing. I left empty handed and very disappointed, but I had other stores to hit so I wasn't too down. As I am walking to the parking lot I am debating on going to another store in this center or driving to Kohls. As I get closer to my car I notice the front passenger side door is wide opened. I got very nervous, I was like what the heck is going on. At the same time someone is trying to park right next to my car. I was so embarrassed so I walked past my car and acted like it wasn't mine. I walk like 15 parking spaces away and pretend to be looking in my purse. The lady trying to park next to my car gets out and says out loud, "Oh look, US NAVY, do you see this the door is wide open but nobody is there." She was basically talking to herself (I think). Then she yells to me, "Hey do you see this, the door is wide open, is this your car?" Ok, so you would think I am already embarrassed I should just admit that I am an idiot and say yes that is my car. What do I do instead? I lie, no, that's not my car! I could have killed myself. She ends up closing the door and walking into the store, I wasn't going to be caught dead near my car so I continued to walk away and watched her walk into the store. Once she got into the store I walked close enough to my car to make the remote lock the doors. I went into another store and came out hoping her car would be gone, but no such luck. I put Mia in the car and left as fast as I could. I was worried that lady would come out and see me. My car in pretty noticeable in town, I mean it not only has military stickers on the windshield but we are in California and I have Hawaii plates which is not very common around here. So, it is only about noon and I have made two embarrassing mistakes, what else could go wrong...? Don't even ask. We will just leave it at I am glad the day is over and I pray tomorrow is better. I have too much on my mind right now, that is for sure.

Mammy

2008-07-01T19:11:00.002-10:00

Mia has been suffering the side effects of *the wedding*. We've all been so busy and she is not used to the *lack* of attention. She enjoys being the center of attention, duh, she's almost 2!! She has also entered into the terrible two's! My 16 year old sister lovingly jokes that this is the milestone Mia wants to hit early!! Ha! Ha! Not funny sis! So, Mia has been a little bit of a cranky one lately, she also gets very clingy to me and won't let anyone else but me hold her. She hasn't eaten for days, literally. I really don't like the food battles, but I do get concerned when days go by and she won't eat. Thankfully she is still taking about 32 ounces of Pediasure a day so she is getting some nutrition.
Yesterday morning she woke up and was in a bad mood, this is not the norm for her. She was standing in her crib screaming. I walked into the room and said "Why do you have to scream why can't you just call Mommy". I walked her into my mom's room and put her in front of the mirror as I cuddled her. When she wakes up I always cuddle with her and give her lots of kisses. My mom walked into the room and was talking to her too. She asked if Mia loved her mommy. Mia was giving me *big hugs* and then she picked her head up off my shoulder and looked at me and SAID "MAM-MY"! It was so cute, it came out more of MAM than MOM and it was broken up a little the MAM and the ME sound. My heart melted, she doesn't say any specific words and she doesn't really babble mommy!! She hasn't said it again so maybe it was a fluke, but her voice is just so sweet! I can't wait to her more!!

The Wedding...

2008-06-30T05:26:00.001-10:00

I am still exhausted from "the wedding" but wanted to give a quick update! It went near perfect and what didn't go perfect was very minor. I am very pleased with everything. Not to toot my own horn, but I will...haha!! Toot! Toot! I made the invitation, response cards, maps for directions, the wedding programs, the bridal party bouquets and the boutonniere's, I also made all of the bridal party jewelry and I video taped most of the wedding (except the ceremony). All of this while making sure everything ran smoothly, believe it or not I even had time for some dancin! It was great. Glad that the stress of it is over.

Here is a picture of me (to the left), my sister (the bride) and my other sister Lisa.

2008-06-23T19:48:00.002-10:00

Today...well today started out very hard for me. I was still having a hard time being strong and keeping it together. I just wanted to cry. I know that for Mia I have to be strong even when I don't want to be. I have a hard time seeking out the support and fully opening myself up to people. I don't want to appear weak or needy. I share a lot on my blog and get a lot of things out there, but there is still so much more to me. So much more that I need to deal with and let go, things that have been bottled up for so long and it's time for me to let them go. I fully believe that you are 100% responsible for choices that you make and just because you have a recovering alcoholic for a mom and a recovering drug and alcohol addict for a father doesn't give you a free ticket to fu** up your life. I have no valid excuse for choices that I have made in my life that are coming back to bite me now, I went in fully aware of the situation. I know that other people influenced the decisions that I made and I fully realize the consequences of my weaknesses.
Last night was so freeing and so heartwarming. You know who you are and thank you so much for being there for me. You have no idea how much that it meant to me to have you there to listen to me. In my entire life I have only opened up to 2 people with as much honesty about my feelings and my *dirty* laundry. I am so glad we met, the way we met isn't our ideal way to meet, but I am glad we found each other. Thank you!!
I also sought support from my (step) father. He is a great guy and has always been there for me. I know that he isn't one to judge or hold grudges. I needed to tell someone that I was crumbling inside, that I could no longer go on everyday pretending that I was ok. I cried, but not as much as I thought I would. After speaking with him I had a sense of relief, like the weight had been lifted. I still had moments of weakness throughout the day and I wanted to cry, but mainly I have held it together. I have also been praying for strength to get me through these weak times.
Mia had her walker fitting today. I expect her to have her walker in about 2 weeks if everything goes smoothly. She actually hasn't been liking the walker as much at PT lately, but when she gets her at home she will be encouraged to use it often. I also might be having a battle with the hospital PT about a charge that they may want me to pay. My insurance is supposed to cover 100% of all of Mia's medical (gotta love the military) stuff, including her PT. Before we began the hospital also confirmed this with the insurance. Today I got a summary of payments made to the hospital from my insurance and their is something for $125 on there that wasn't covered by the insurance and it says "This Is Not A Bill" but that is under the "Amount You Owe" section which I am sure means the hospital will be sending me a bill. I am going to dispute it however because it is not my fault if they performed a service without insurance approval. I just am not in the mood to deal with this right now so I pray that it will all be taken care of on their end and I won't get a bill.
GREAT NEWS!!!!!!!!!!!!!!!!!!!! Finally after many many months Mia is going to start 1 of 2 Speech Therapies!! We got the call today but I wasn't home so I will discuss it while I am at the hospital tomorrow. Even better the location is very close to where we live. Right now it takes about 35 minutes to get to Mia's appointments so this will be very nice to only be about 5 minutes away. I am so excited for my lil' girl.
LAZY BONES. Well, as I have said before the young girl who is Mia's OT calls her lazy or lazy bones and it bothers me. My sweet girl is not lazy, she is very determined and a hard worker. Last week the OT was much more positive than ever before and only called her lazy one time. She has a hard time dealing with Mia when Mia won't do what she wants. She fights with her instead of trying to do different things to motivate her to do what she wants her to. So, after the session last week the OT and I were sitting on the floor discussing the schedule for July. At the end I looked her right in the eye and said " I know that I am probably being over sensitive to it and I know that you don't mean anything by it, but I don't like when you call Mia lazy or lazy bones. I am sensitive, but I would appreciate it if you didn't call her that." I said it calmly and very nice. I looked her in the eye the entire time and didn't feel nervous at all. She had a look on her face like someone told her that someone in her family died or a deer in the headlights kind of look on her face. She said "Oh (in shock) ok." I said, " Thanks, see you next week." I left glad that I said something, mad that she didn't apologize but proud that I stuck up for my baby. We will see what happens this week.

My sister is getting married on Saturday so today she treated me and my mom to a massage. It was great. I didn't have a wonderful therapist but it was still great. I haven't had a massage in years!! It was a thank you to us since we have planned almost all of her wedding and done a lot of the work ourselves!!

2008-06-22T18:35:00.003-10:00

Not sure what to call this one, so I will leave the title blank. I am having a pretty bad day. I have been very sad/depressed for the past couple of months, but it is getting worse. I have tried my hardest to keep a positive attitude and put on my *strong* face, but I just can't do it anymore. I am crumbling inside. I am having a hard time being around people, mainly all of the ones that live in the house that I am staying at. I just want to be a lone, all alone, to cry, to blog, to sleep all day if I want to and to scream and yell if I so desire. I don't want to be away from Mia, but I don't want her to see me this way. I have no privacy at this house which only makes the situation worse. I have to bottle everything up inside and when I reach my full capacity it all comes out. Today was overflow, literally, the tears would not stop. Every time I thought I had a moment of privacy to just let it all out someone would walk in and I would have to hold it all in. You would think that if you went into the bathroom you would have some privacy, but NO! I guess when you are in the bathroom for over an hour it is pretty obvious (unless you had bad food) you probably are not going to the bathroom. I get interrupted when I am just completely crying, with the tears that could fill up the sink and I hear "Tara!" I try and compose myself. I respond, "yeah." As I hear the feet approaching the door it is "Are you ok" as the door is being pounded on like the police are at the door. I freaken about flipped out. "I am fine!" I won't go on and on, but basically, what do you want Mia to do right now. I know must go and face everyone with my swollen blood shot eyes as I go and get Mia. My mom asks "What happened to your eyes." I rolled them and respond with "Nothing." I give Mia a bath and cry some more and pray so hard that I can compose myself and get Mia out of the bath. I got it together for the most part and came out with Mia and the questions continued. "Are you crying?" Respond:"No" I mean come on don't ask and obvious question. I have Mia all dressed and my mom starts in at me too. I say "I am fine, I don't want to talk." I do want to talk, but not to them. They cannot do anything to fix what is wrong with me and they certainly won't make me feel any better. Even as I try to write this blog, suddenly everyone wants to be in the same room sitting behind me looking at the computer. The questions "What are you doing?" What the f does it look like I am doing, I am on the computer and typing. So, instead I say "Nothing". Duh it is so obvious I am doing something more than nothing, but it's not their business.

Just when you think it can't get any worse...

2008-06-17T20:12:00.002-10:00

As if I didn't have my fill of crap yesterday, it continued on today. I suppose it is my fault. Ever since Mia was 5 months old the doctors, specialists and therapists have commented on Mia's *slow* but purposeful movements. Up until a couple of weeks ago I figured it was due to her low tone. When she has met the new therapists and they also commented on her *slow* movements I started to think more about it. Why is she so slow...is it her tone or is it something else? So, you would think that since I had such a bad day yesterday I wouldn't chose today to discuss it with her PT, but sometimes hind sight is 20/20. I was going on very little sleep (3.5 hours) so I can use the excuse I wasn't in my right mind. No one in their right mind would ask a question like that after having the kind of day that I had yesterday. Well, I asked and the answer was not what I hoped to hear. I have had 2 big reality checks between today and yesterday. The first one was when I showed up to a special needs class and no one else was there for the class, as if that wasn't a huge slap in my face rubbing it in that my *normal* is so far off from what the rest of the world seems to have as *normal*. I felt so much more like a minority (in the parenting world) than ever before. It was like WHACK TARA, SEE MIA IS DIFFERENT AND YOU NEED TO FACE IT! Today's reality check came when I asked the PT about her *slow* movements. She tells me she thinks that it has more to do with the area of the brain that is *injured* rather than her low tone and that she will probably always be *slow* in her movements. I almost started to cry right there. I was just so upset. In my mind I thought it was the low tone, which I know doesn't go away, but with muscle strengthening it can be somewhat overcome. I figured once she got stronger her movements would get quicker. I cried the whole way home. It isn't only the trained medical people that comment on Mia's *slow* movements, it is also perfect strangers. If people already notice it and she is only 1 I am sure as she gets older it will be even more obvious. I know that I should be channelling my energy into something more positive than crying and complaining about it, but I am on the pot and I am not getting off (at least for now) so boo f'ing hoo for me!

What a Day...

2008-06-16T21:00:00.002-10:00

Where to start...today was not a good day...at all. I am angry, hurt, sad, mad, frustrated, tired, overwhelmed, confused and flat out finished to say the least. If I had known what the day was going to bring I think I would have passed on the whole "waking up" thing. Let's see, the day started out ok. I was able to finish getting ready, send an email and make a phone call all before Mia woke up. That is always a plus to get things done before she wakes. I usually stay up way too late after she goes to bed just to have time to myself, but it doesn't allow me to be very productive sometimes (like important phone calls). I am hopeful that the Kaye walker will be available to Mia soon, but given the history of everything I won't get too excited. When I called the insurance they didn't have a request for it. When I called the DME the guy that answered was seriously nuts. He like flew off the handle when I called, started to argue with the receptionist about transferring the call to him (while I was on the phone). It was good that I called though because the hospital didn't fax my phone number to them, so if they had questions it wouldn't be easy to get ahold of me. Which, they did need to reach me because the hospital also didn't put my insurance information on the sheet either. Wow, is this the first time they've done this...? (sarcasm)! That gets taken care of and 20 minutes later I get another phone call, the PCM has to fax this request to the insurance, so I hang up and call the doctors office to request this. It's a good thing I called or I would be waiting until me *** falls off to get the walker. So, as it stands now I anticipate approval by the end of the week. I HOPE!

My Gym...well her waddlers class went well with the exception of my oversensitiveness. There are 2 women there who have tiny, scrawny kids, younger than Mia and Mia is clearly petite but a good 5 inches taller than them, these 2 women both constantly call Mia a baby. They keep telling their kids...look at the baby. I am sure they aren't really bscratches and they are just saying it, but it freaken pisses me off. The little things that I let get to me are ridiculous I know, but oh well. The other thing that bothers me is the teachers in the class can't seem to get that Mia can't stand without support. Today Mia was standing holding onto a Little Tikes Basketball (and she even made a basket) and it was time to clean up. The teacher comes up to her and takes the hoop away (her support) well Mia grabs her hand and the lady lets go and walks away meanwhile I am trying to get over to her and another mom runs over and takes her hand. My poor honey. Can't they see she needs more help than that?

Oh that MY GYM makes me very upset. Today, the day I have looked forward to for the past 16 days was the day that was supposed to be the SPECIAL NEEDS CLASS. I get Mia all geared up and excited (and I am already excited). We get there and I kind of wonder...well, what are we the only ones here? All of the teachers are sitting around the floor having a staff meeting and the owner comes up to me and asks what he can do to help me. I reply I am here for the class. He laughs, we don't have classes Monday afternoon. I say, well according to YOUR schedule you do have a class at 4:45 that started today for Special Needs. He walks over to grab a schedule (I am sure to try and prove me wrong) and BAM there it is on the schedule. He then tries to talk his way around it and blame me. He said well, there hasn't been anyone that said they wanted to come to it so it hasn't started yet. (According to them you didn't need to sign up just show up). He keeps offering to call me when it starts up. I explain to him that we already go to the Waddlers Class so I can just get the info during class. He looks at me confused and beats totally around the bush and is all hesitant and crap and stutters (not as in a speech problem, but as in a big fat wuss that is scared to ask) "What exactly are her SPECIAL NEEDS?" Well, what difference does it make. You said you were offering the class I didn't know I needed to discuss her needs with them. Whatever, I reply...she is Globally Delayed (and I said it smartly too). He then says, well, we do have some people interested and we are just waiting to have 2 or 3 and we will start it. (Now he has people interested when 2 seconds ago no one was?) UGH. I was so ANGRY! Like it is easy to have a SN child and then to go and be treated like a fool for showing up was just too much for me today. Mia meanwhile I screaming as we are walking out the door, she was so excited to be there to *play* but no! I left and just loudly said how completely ridiculous this was. I really wanted to *flip out*. How mad am I? I feel like it was a *joke* played on me and I fell for it. Yeah Tara, come on over we will have a great time, then no one else besides me shows up. Thanks.

Lastly, I don't want to get into what totally took my day over the top, but it was something, life changing, that I have suspected for a very long time that finally came to the surface tonight. I am very mixed about it, but emotionally I am just too overwhelmed for anything else right now. I am not going to *call* anyone out on this blog because well, that is just rude, but I am sick of a certain person (not my bloggin buds) that manipulates so much and tonight was a perfect example of it. I am glad that someone else feels better and I feel worse. I am glad that someone else wants everything to be about them. To justify your actions over and over again when you are in the wrong is f'd up to say the least.

Off to bed, I hope tomorrow brings positive experiences and a new least on life. I cannot take much more of my current *life*. I need a break.

Going Backwards

2008-06-13T15:18:00.004-10:00

Ok, my mom has high speed internet access, but this is the slowest connection ever!! I haven't posted pictures for a while because of this, but I wanted to put Mia's picture from 1 month ago. Excuse the fact that I have my poor girl in orange and denim, she looks like she matches the little tikes slide!

FRIDAY THE 13th of June...

2008-06-13T14:23:00.003-10:00

Ahh!! Where has the time gone? My baby is 22 months old today. In 2 more months I will have a 2 year old, oh my goodness! I truly cannot believe how fast time has gone. I know that your baby is always your baby, but Mia really is a lot more like a baby than other kids even younger than her. I was with my friends nephew who is 18 months old and he seemed so much more *grown* up than Mia. I don't mind her being my baby, of course I would rather her not be globally delayed, but I love her anyway!! Here is the lil 22 month old in her pool today!!

More Evidence of How Blessed We Are...

2008-06-12T20:43:00.003-10:00

Since the day that Mia was born I knew that God had a plan for her. Of course her birth was very traumatic and not the way that I prayed for it to be. I knew that God was taking care of her. I knew that He had a plan for her. If He wanted to take her away from us right at birth He could have, but He didn't. A matter of seconds could have changed Mia's story, though her birth was traumatic giving birth to a still born would be tragic. I am so thankful that the Lord allowed Mia the opportunity to live life. I am so thankful that I get to be Mia's mom. Being a mom to a special needs child isn't easy by any means but He thought that I was right for the job! What a huge compliment.
Everyday I know that we are very blessed and so many prayers have been answered for Mia. I know that things could be so different. To see Mia alive and active and to think back at her birth and read the birth records you wouldn't think this is the same kid. Yes, she is globally delayed. Yes, she is approaching 2 years old and has yet to speak and doesn't walk. Yes, the thought of her having to use a walker breaks my heart. I cry a lot. I often feel robbed, then comes the feeling of guilt because she can do so much and I know a lot of other children have more delays than her. I pray that Mia will catch up someday and I am thankful for all of the prayers that have been answered for Mia.
Mia had an OT eval today. I am telling you it is so wonderful to meet with excellent therapists! The OT today was GREAT. Again, like the PT the other day I really liked her, she is very nice. She was so compassionate when I told her Mia's birth story. Yes, I have had to replay her birth so many times lately. Today when I was telling the story I did have to fight back tears but it was also a huge reminder of how far she has come. Of course I want her to develop and achieve milestones like every other child, but the fact of the matter is, she isn't going to. This doesn't mean that the milestones won't be achieved and it doesn't mean when they are achieved that it won't mean as much because it is *late*. In fact it will probably mean even more to me since I know how hard things are for her. She is the sweetest girl and I love her so much!
The OT had so many good things to say about Mia and her abilities. She is also very excited to work with Mia because she said she is much higher functioning than all of the other children she works with. She said she is going to *push* Mia. She also said Mia will be one of those kids that has all of these delays and basically catches up all at once. I know she can't see the future, but this is very promising. It is so nice to have someone give you positive feedback. As far as Mia not stacking blocks and doing things like that she said those skills should be emerging soon and she also said because Mia is so smart that it is all about motivating her to do this stuff. I told her that I wasn't too sure about the infant development teacher, I feel like she doesn't control the session she allows Mia to. Mia and her don't play with the toys because Mia doesn't want to so she doesn't make her. I want her to help Mia not just be a playmate. The OT said that the infant devel should be working on most of the same things that OT is working on. She said most parents complain about the teachers and the lack of controlling the sessions and lack of children achieving their goals. She is going to try and come at the same time as the teacher and give her some suggestions on what she should be doing to help Mia progress.
Today was a good day. Thank you God for answering so many prayers for Mia and helping her get stronger and do more every single day!

Wink, Wink

2008-06-11T21:55:00.002-10:00

Just something cute that I wanted to share. Mia can offically wink!!! My mom tells her to wink and she will!! It is so cute!!!

The Good, The Bad and The Ugly...

2008-06-11T20:58:00.005-10:00

Ok, so maybe not the ugly, but the good and the bad for sure.

The Good...Mia is showing that she comprehends things. I know that she is *all there* it is just nice when she does things that outwardly show me. Yesterday the PT was done with the eval and she packed up her toys in her duffle bag and zipped it up. Mia was sitting behind the therapist at this point because she was trying to (unprompted) get the therapist her shoes. She looked at me, she pointed at the bag and did the sign for MORE!!!!!!!! She's never done it like that before. I was so excited, ofcourse I wish she was talking but this was GREAT! Last week during infant development she wasn't feeling well and she didn't want to play anymore, she looked at the teacher and waved good bye to her. She has done that several times, when she is finished (in her mind) with therapy she will look at them and wave, usually they won't leave though. This time I did tell the teacher that Mia had enough for the day and we ended early.

The Good...Mia had OT today and the therapist says she already can see a very small improvement in Mia's strength. It has only been a few weeks and she missed last week so that is very good that she already sees her strength increased!! Mia should be getting her Kaye walker soon too. I spoke to the office lady that does the ordering and of course they hadn't done anything for it as of yet, but she did say our insurance should cover it and since it isn't custom ordered we should be able to pick it up at a medical supply store locally. I hope this means Mia will have her walker in the next couple of weeks. I am supposed to hear something by Saturday, if not I will follow up Monday.

The Good...I get to see my therapist again tomorrow!! I was feeling pretty good for the last few days and I thought, boy I think I will be able to make it through the session without balling. Wrong, I am feeling pretty down again. This is going to bring me to the BAD...being away from my hubby is so hard. This isn't the first or the last time that we will have to be separated. Sometimes it is easier to deal with than others. Right now I am struggling with it. I wish he was here, I miss him so much.

The Bad...so not to air my dirty laundry but my sister is getting married in OMG 17 days and our dad isn't going to attend. So, a brief history, my parents divorced when I was 9 years old and from the time I was 9 years old until May 2006 my dad was pretty non-existent in my life. We went about 10 straight years with no contact. He was heavily into drugs, he used to call on occasion and say how sorry he was but he was so out of it that it was always the *victim* excuse. 10 years went by, I saw him walking once while I was driving to school, I briefly saw him in passing at a family function and he asked me why I never call (uh, duh you never answer your phone and ofcourse you would never call me back). I just laughed it off and went on my way. In May 2006 I was informed that he was clean and sober and wanted to pursue a relationship. I was prego with Mia at the time and I said if he wanted to have a relationship he can write me a letter, I said I didn't want to talk to someone who wanted to make excuses for his actions. Well, me being the weak person that I am made the first attempt at contact and I wrote him a letter. I basically told him that I was sorry that he missed out on my life, but I lived my life and I gave him my phone number. He called me and things were going well. Mia was born and given the trauma he offered to come out to help out. My mom and sister were with me and it would have been weird with him so I declined. He was supposed to come out right before Thanksgiving (which I was basically I will believe it when I see it), but he didn't come out, his oldest daughter suddenly died. This was a valid excuse and he did end up coming out in March. Anyway, slowly the relationship that we were trying to rebuild started to dwindle. He didn't call too much, he was always complaining about being depressed but wouldn't do anything about it. My sister went in person and spoke to him and let him know that she really wanted him at the wedding but our step dad would walk her down the isle. The wedding is at my parents (mom and step dad who is really a dad to me)and my sister wanted my step dad to walk her down the isle since he has always been the one that was there for us. My bio dad said he understood and he knew that my sister would do that, he cried, but knew. It all sounds reasonable, but when you are dealing with someone who isn't reasonable, who is selfish and a wuss it's not reasonable. I haven't spoken to him since April 9th and that was only for a second because he was busy. I called him and no answer, no return call. I heard from my Aunt ( his sister) that it is just too hard for him and he won't be attending the wedding. Ok, so that is sissy enough that he can't man up and attend the wedding since he has missed every other major event in our life aside from our birth. But now he won't answer the phone or return our calls. I mean if you aren't going to attend fine, but don't make it worse and not even have the guts to say it to us. At this point I cannot continue to have a relationship with this man (not that I have a choice since he has yet again abandon me) but if he were to try and call and be apart of my life I won't do it. I can't have Mia around someone who is that selfish and undependable. So I guess that can be considered the UGLY too. I just can't see how someone could do that to their child. Especially since I have a child now, I just can't see ever being able to do something to disappoint her. He is so selfish.

The Bad...I spoke to the office girl at the hospital today and she said it will probably be another 4-8 weeks until Mia has a speech eval. This is a huge frustration for me. I want her to catch up in all aspects of development (duh) but she is getting increasingly frustrated with communication. I have no idea why she can't talk and it hurts my heart so much. I see her frustration when she is trying so hard to get me to understand what she wants, it's like shirades but I often end up on the losing team. She knows what she wants, but I can't always understand. I see her being very frustrated about not being able to walk and talk. She tries so hard to balance herself in order to stand and she babbles just something isn't working there. She is making positive steps though, she will do some copy noises, growling and similar noises. I need to find some books to educate me more on why kids don't speak. I mean I know about apraxia and other things, but I know it will help me if I read more about it.

Hodge Podge

2008-06-10T20:02:00.002-10:00

Wow, I sure haven't been a very faithful blogger lately. I am slippin. It's not that I don't still have a love for bloggin, but I must admit CVS is taking my time, I am kind of two timing my blog. Ok, so I tried and I guess I am not that funny. It is true though, I have become an addict. Like a real one, I can't sleep and I get a real high after most of my CVS trips. If they don't go as planned and I don't get my fix, WATCH OUT! Ok, I won't go on and on about CVS though, I would love to. Cut to the chase. I went to CVS last night and sorry there is no photos but here is the run down.
27 oz bag of M & M's (6.00)
2 Garnier face scrub (5.99 each)
3 Nivea Shave Cream (3.99 each)
1 Reeces (.50)
2 Sour Patch Kids (.88 each)
I had the following coupons:
2 $1/1 for Garnier
1 $4/2 for Nivea
1 $1/1 for Nivea
1 $1/2 for candy
1 $3/15 CVS coupon
My Subtotal was $13.48 and I had ECB's that came out to $13.48 so I paid ZERO OUT OF POCKET. I got 10 ECB for Garnier and 5 ECB for Nivea

Today I went back and I got
3 Nivea Shave Gream
2 Garnier Face Scrub
1 Oral B Two Pack toothbrush
1 Halls Cough Drop
2 bags of Sour Patch Kids
Total was .37 out of pocket and I earned 10 ECB for Garnier, 6.99 ECB for Oral B, 5 ECB for Nivea and 5 ECB for the candy deal. I am lovin me some CVS
I will go tomorrow and earn another 21.98 in ECBS when I buy 2 more Oral B 2 pack toothbrushes, 1 Brut Deodorant and 2 Nivea shave creams. This is the greatest shopping addiction ever, I get the thrill of shopping, I get tons of products that I can use and I pay next to nothing!! My one complaint is I have to go to a CVS that isn't as close, not far but the one that is closest to the house is always out of everything, even when I get there right when the store opens the first day of the sale. They have ordering issues I guess.

Mia had a PT eval today. This is through EI. I liked the girl alot, she is just a couple of years older than me and we really hit it off. I think Mia will do well with her. I like her approach and her action plan. Mia will get at least 5 hours a month of PT and she said if she thinks she needs more they will authorize more. She doesn't think Mia will be able to handle anymore right now though being that she has 1 hour twice a week of PT and she has 1.5 hours a week of OT and soon to have 2 sessions of speech a week, this doesn't include her 1 hour of infant development or her SN My Gym class that is 2-3 times a week. Finally it is all coming together and Mia is getting not only a lot of therapy but EXCELLENT therapy. I am very pleased. She also said that based on her quick assessment Mia is most likely considered Scattered to 15 months in gross motor!! OF course solid 21 would be considered *normal* for her, but I am thrilled to hear 15 months, that is way more than I expected. She is coming along...slow and steady!

Speaking of slow I have a complaint. I take Mia once a week to the waddlers My Gym class, this is 14-22 month old *normal* kids and one of the mothers almost got punched by me (well, not exactly, but she did rub me the wrong way). First of all, her kid is probably much younger than Mia (I wouldn't know though because none of the parents talk to anyone, kind of weird). Her kid is short and tiny. Mia is tiny, but she is on the taller end (she is below the 5th percentile for weight, but about the 75th percentile for height). Anyway back to complaining, Mia was playing in a swing they have a hammock with a green turtle sandbox inside of it. Mia was being silly and laid down in the sandbox (w/out sand) and the mother walks by and looks in at Mia and tells her kid " Do you see the baby?" I am sure she meant nothing by it, but I was annoyed, it was like she was getting a cheap shot in on Mia because she doesn't walk. I let it roll, but obviously it didn't roll all the way off or else I wouldn't still be bent about it. To stay on the track on complaining I get tired of people commenting on how S L O W Mia is. Yes, she is slow, but does everyone think that I don't know that so they want to point it out? For instance, a stranger will say, wow, she is so slow, she must be tired. Or wow, does she always move that slow? I want to say, well actually this is quite fast considering she was not moving at all when she was born and she had to be resuscitated, but thanks for noticing!

Well, I am suddenly way too tired to continue. I have more but that will have to wait.

One Hand Closer to Independent Walking...

2008-06-02T19:47:00.006-10:00

I haven't had a chance to post lately. Today I was going to skip it again, but I decided to stay up a little later to post. Let's see, where have we been...

Thursday I met with the therapist for the first time. I don't have a lot to compare her to, but I liked her and felt comfortable talking to her. I cried a lot (which I expected) but I also said a lot. It was so nice to just tell someone every little *secret* you have. She will try and get to the bottom of why I won't open up to friends/family. I mentioned it to her and I told her reasons why I might be that way but said I really wasn't sure. I dropped a bomb on her towards the end of the session (not on purpose) but she was totally not expecting that to come out of my mouth. I could tell by her facial expressions and then she used the work *prick*, which made me laugh. She was going to meet with me again this week but she only had one day open and it conflicted with Mia's therapy. I go back next week. I can't wait. Though it felt good getting so much off my chest I still have so many things that I have kept in for so long that I am dying to get out. I felt a little uneasy afterwards the more I thought about things that I said/didn't say. I knew I couldn't possibly go through every single issue I have with her in 45 minutes, but it was almost like your favorite TV show that you are all into and then it says "...To Be Continued" you feel like OH MAN and then the anticipation grows. All and all though I am very glad I met with her. She said that I haven't been able to fully grieve about all of my hopes, dreams and expectations that were changed during my labor with Mia. So we will work on that too.

Friday, hmm, what was Friday? I must say it was boring, I can't even think of anything we did.

Saturday...Mia had PT and it went so great! I was worried since her OT appointment on Wednesday was bad. She likes the PT much better, she is more experienced and has great interation with Mia. She asked me how much walking Mia does throughout the day. I told her 50 percent or more per day. I have to let her walk (holding my hands of course) everywhere we go. She flips out otherwise. She was having her do exercises on the stairs and then she said she wanted to see how Mia did with a walker. I have to say I have wondered for a while why Mia hasn't been given a walker, but at the same time I didn't push the issue for obvious reasons. So she takes Mia by the hand (yes, hand as is JUST ONE HAND) and walks her to the closet to get the walker. Mia walked so good. I commented that Mia has never walked that well holding just one hand. She gets the walker and says she wants to see how Mia does in the walker and how long she can handle it. Well, that little girl took off and walked and walked and walked and walked and finally the session was over and we had to peel her off of the walker. She walked for 20 minutes straight, through the halls of the hospital, outside, on a slant and only fell one time! She was so happy and smiled and giggled the entire time. It was so amazing to see her on it, she knew exactly what to do with it. Of course as much as I felt so happy seeing her so happy and proud I will say that it broke my heart. People would stop and look, turn and look and whisper something. I know that they don't mean anything by it and that it isn't everyday that you see a little 3 foot tall kid cruising around with a walker, but it still hurt my heart. I am just so thankful that Mia is too little to know or care when they stop and look. She actually has a look on her face like everyone must think she is just the coolest!! I know that walker is supposed to be temporary and is a good thing. The PT says it speeds up the independent walking and most kids only use them for a few months. I am not going to get too excited about that yet though, I was told the same thing about the SMO's and she isn't walking yet. Realistically I knew that Mia wouldn't get the SMO's and be walking in a month, but at the sametime the unrealistic side of me hoped for that. I felt pretty down after the appointment. I called Mike (husband for anyone who forgot/cares) and he listened and made me feel a little better. I took Mia outside to play and guess what? She walked many times (about 15 minutes)though the backyard being held by one hand! She was so proud and laughed the entire time!!! I am so proud of her. She knows (since she is the ALL KNOWING ONE) that my heart broke to see her with the walker so she is going to try her hardest to walk before her walker arrives!!! Ok, I know that is getting a little carried away...it's late.

Sunday...5:30 AM wake up to the lovely sound of puking! Poor Mia has the flu bug. I had to wash all of her bedding, it was in her hair, on her stuffed dog, it was so gross. After the morning puke she finally went back to sleep and just had yucky poo all day but at the end of the night she puked again...this time in the toilet!! She had more yucky poo which gives her horrible diaper rash and she hasn't eaten much over the last two days.

Today she seemed good enough to go to her My Gym class for the first structured class. It went well, she cried at first when they were singing, but she is a little *drama* sometimes. I liked the flow of things at My Gym, it is a lot better than Gymboree Play and Music. I am so thrilled to say this My Gym is starting up a SPECIAL NEEDS CLASS!!! I am so excited. I can't wait. Mia will still go to the waddlers class each week, but during June, July and August she gets two classes a week for the price of one! So she will get to be around typical kids and other super kids that are special like her! I am so excited, I haven't had the chance to meet (in person) any other SN parents or kids. I just can't wait!!!!

Wow!!! If you read this entire post you probably want to go and take a nap. That was a lot of boring writing I just did...

Lazy Bones...

2008-05-28T19:12:00.003-10:00

Mia woke up today and was very tired. I think all of her somersaults last night wore her out. She had a horrible OT session. OT is new to us and this was Mia's 3rd visit. I do like the homework she gives to Mia, but I don't like that she calls Mia girlfriend, but the one that really gets me is when she calls her lazy bones. I know that she doesn't mean anything by it and when she said it last week I just ignored it and let it roll off. Today it bothered me. I know the therapist was frustrated with Mia because she would not cooperate, but she is trained to work with children and I know that there is no way that Mia could be her most challenging patient. When Mia wouldn't do the work she kept calling her lazy bones. I know sometimes Mia does not want to do things, but I don't think she is lazy, I think it is hard for her and sometimes when work is hard we don't want to do it. Mia needs her core strengthened so much, she is so weak. My goal is to do my best and having Mia do her homework at least once a day this entire week. It will be a challenge, sometimes I just don't want to do the therapy, I just want things to happen for her.

We went to My Gym for a free play today. It was interesting. It is kids of all ages so it was pretty wild. Mia really enjoyed it there. I let her take me to whatever it was that she wanted to do. She jumped on the trampoline, climbed up the stairs, played in the ball pit, crawled up and down the ramp, went down the slide and her favorite thing was this little stair thing that looked like a piece of therapy equipment. It had 3 small stairs, then it had a flat area and 3 more small stairs, it had 2 bars, one on each side. Mia got up there and climbed up the stairs but when it came to going down the stairs (which are very small and close together) she didn't know what to do. Her palms were so sweaty, she was nervous. She figured it out though! I couldn't get myself to talk to her, but there was one other SN mom. Her child was older and more advanced than Mia. I knew by the way the mom played with her that this was no ordinary child, she was much more than ordinary. She was very cute, sweet and friendly. I could tell by the way the mother spoke to her that she has been in those therapy sessions so much that the words "nice crawling, or good balancing" came to her like second nature. When I first heard her talking I thought, well, maybe my interactions and therapies with Mia aren't much different than those of a *typical* child. I knew I was wrong though. A short time later I overheard her speaking to the director about her child's issues with physical development. I wanted to speak to the mother, but it just never was appropriate, but maybe I will see her again.

I really don't like Dr. Phil, but I often watch his show because it gives me an hour of comedy. Today before we left for My Gym he was on and I saw a brief clip of a little girl who was born prematurely, she weighted less than 2 pounds at birth. This was her adoptive mother speaking about the child and music therapy. I missed part of it, but basically this child was not supposed to see, walk, talk or hear. She spoke her first word at 3.5 years old during music therapy. She is able to not only walk but run and she does speak. I need to get on Dr. Phils website and see if I can find out more details on this child. It was so inspiring and gives me even more hope for Mia's future. I wish TLC or Discovery Health would start a series on children with CP or developmental delays. I would so tune in, Jon & Kate + 8 is getting old, time to switch it up a notch. Show day to day life of a special needs child, therapy sessions, mobility issues, feeding issues, the emotional wear and tear on the parents, how hard we work to find answers, to find doctors, etc. Ok, I am going on and on. I do wish that they would though. Not that anyone who has not walked in our shoes could fully appreciate what it is like, but it would certainly give insight.

One last thing, back when Mia had her hearing appointment in February I was on the way to the hospital and I was talking on the phone to my mom. I told her that Mike was meeting me there because I could not be there alone if they told me again that she had *borderline hearing loss*. I said I could not handle it. She said: Well, that's why you are going. If she needs hearing aids, well, then you will get them." That really irked me. I replied: "Yeah like you would have wanted your little 1 year old wearing hearing aids. Of course if that is what she needs I will do it but that is not what I want." And of course she still doesn't get it and comfort me she responds: "Well, you think I want that for my granddaughter?" It was pointless, she will never get it, I am not saying that as the grandmother Mia's *issues* haven't made her heartache, but she had 4 children, all healthy, her grandmother pain isn't the same as mine. I don't care what she thinks, it's just not. Well, the other day she was venting to my older sister about my younger sister and something that was going on that was bothering her and my sister replied: "Well, so." My mom said, well, when you have a daughter and if this goes on with her then that is what I will tell you, well so. Later on I asked my mom what that was all about and she told me about my my older sisters response to my mom when she was venting. I said, well now you know what it feels like to have someone discount your pain. I reminded her of the conversation we had on the way to the hospital and how even when I tried to give her insight on my pain she still turned it around and made it about how she felt. She didn't apologize, I didn't expect her to, but she did say, well I guess it is true, you can't fully understand what someone is going through unless you've gone through it yourself.

Somersault...

2008-05-27T19:04:00.005-10:00

I haven't posted for several days. I have been busy making jewelry for my sisters wedding. She is getting married in a month. Up until a couple of weeks ago I didn't *bead* but I offered to make jewelry for the bridal party. I figured I would be able to do it. I am almost finished, I have one bracelet and two pairs of earrings left to make. The bracelets are the hardest so far because the chain is so small. I will post pictures soon. It is kind of addicting though. I did go and buy some of the tools needed (pliars, wire cutters, etc) so I figured I should make some more things. I offered to make my mom one too(as her Mother's Day gift). I then decided I would make myself a pretty cell phone lanyard and I bought beads to make Mia two necklaces. I am in my friends wedding in less than 2 weeks and I thought it would be cute to have a pretty necklace for Mia to go with her dress. Of course she couldn't wear the same necklace twice (ha ha!) so I bought more supplies to make another necklace to go with the beautiful dress Mia is wearing to my sister's wedding. It's fun to do. The hardest part is figuring out the design. I am doing chain style so it takes a little longer than if I was just stringing onto wire. I bought some wire and stretch material to see how I like that too.

I am excited to go and see the therapist on Thursday. I am nervous though. I have no real idea of what to expect. I feel like I have so many *issues* to address. I worry that because I am so sensative that I will just cry the entire time. Which I am ok with crying as long as I am able to still speak. I hope I like this lady. I was so emotionally overwhelmed two weeks ago when I called to schedule this appointment, it was kind of funny because she didn't answer but her voice on the machine sounded so sweet and caring I about cried. When they sceretary called to schedule and she asked what was going on and why I wanted to meet with her I almost could not get it out without crying. I at one point said: "well, I have a 21 month old daughter (but I took a long pause to prevent crying) and she replied, oh how cute. I then finished with saying that she has special needs and it can be very overwhelming.

So, my title: Somersault...I know it isn't a milestone, but who says I can't celebrate it if I want to?! When we were still in Hawaii Mia started to try and do somersaults. She did do one on the bed but hasn't been able to get all the way over since. Tonight she was so determined and she did it...many times. She was so excited with herself that she started to clap and laugh and poor girl, when she laughs hard she snorts!!! I was so happy for her. She is such a hard worker. I just wish her daddy was here so he could see his proud baby girl! She just kept doing them. It started with her trying to do it but not sure what to do exactly. So as she was in her position I showed her how to walk her feet closer to her head and roll. She laughed so hard and then tried it herself and SUCCESS!! See, she knows she is starting My Gym soon and they are gymnastics based so she wants to get ahead of the game! That is my *all knowing* girl! Last week I did cartwheels for her and she thought it was so funny. I am sure I do look funny, but was pleased that after all these years I can still do them, maybe not as graceful as I once was, but that's ok, who's scoring?

Say That...

2008-05-22T05:42:00.003-10:00

Oops I got a little carried away in my previous post. I forgot to blog about what I originally came on here for. Mia had her OT appointment yesterday. It went well, she worked really hard and was exhausted afterwards. I really like the OT. My mom doesn't, but she doens't like anyone who has anything *negative* to say about Mia. She loved the PT the day before because she basically only had positive things to say. I guard myself against being like her and being a deffensive mom. I've been through a lot with Mia, I don't want people to sugar coat things, tell me like it is, tell me what we can do to fix/help it and move on. The OT gave Mia some good homework though and it's going good so far. Things are falling into place now if she can start speech therapy I would be a happier mama!

Mia had her teacher come to the house to play on Tuesday. To be honest, it's a little weird. I have to give it time since Mia didn't have a teacher in Hawaii, this wasn't offered. She basically sat there and watched Mia play and I sat there and watched Mia play. She did guide her a few times, but that Mia, boy she is so stubborn. The teacher was showing Mia how to pound a hammer and Mia was more interested in taking all of the toys out of the suitcase. Mia loves to sit in suitcases...weird I know! I was surprised that she wasn't sitting in the suitcase and actually kind of playing with the toys. She was taking out a lot of toys, little by little and pretending to want to play with them. The teacher shows Mia how to pound the toy with the hammer and gives Mia the hammer to do it. Mia doesn't want to do it (surprise!) because she is busy trying to take the toys out of the suitcase. The teacher again encourages her to try, so what does Mia do? She continues to take the toys out of the suitcase with one hand and takes the hammer with the other hand and without taking her eye off the suitcase she starts to pound the toy that the teacher is holding! How she managed to pound all of the worms through without looking is amazing! I couldn't help but laugh! That's Mia for you!! Eventually before the session was over Mia was in the suitcase and a happy camper!! Mia doens't play with toys the right way, you know, stack blocks, put the rings on, etc so I asked the teacher how to get her to go it. I mean, I have tried the obvious and we've worked on it for months and months and she still won't do it. She didn't really give me any advice, she said that is why she is there to work on that. Dumb, like one hour a week is going to help, I need to know too!!

Mia is trying so hard to stand up! She started in her little pool the other day. She would push herself up off the bottom of the pool and try and stand, she would fall, but she tried. Now she is trying so hard in the house to do it. She is getting close. It is so cute to see!! She will also test her balance and is getting to about 2-3 seconds before fallling. She is figuring out how to maintain balance, she just hasn't put it all together yet!!

Oh yeah and I think Mia is using a word!! She has been babbling so much lately and repeating the same babbles and actions. She points to things and it sounds like she is saying "THAT"!! Oh I keep praying that she will learn to use her words soon!

Hope

2008-05-22T05:18:00.003-10:00

I just got through reading an email that truly touched my heart. The words that were written weren't exactly directed toward me but I had to hold back the tears. These were tears of joy. I know that things with Mia will never be easy, she will always have to work harder and longer to accomplish things that to other kids comes so easily. I am ok with that. I sometimes feel *sorry* for her, but what good does that do? She is a hard worker and there is nothing wrong with working hard to accomplish things. If I feel sorry for her it can have a negative impact on her self esteem later in life. She is who she is and God has a plan for her. When she was born she brought more and more people closer to God through prayer. She had people from all over the US praying for her. People would always ask " How's that baby Mia doing?" To see her remarkable progress is a true testament to God's healing hand! God has answered so many prayers for Mia. I don't know how someone without faith could go through such a trying time. I just can't imagine going through this without knowing that God has a plan and He is there to give me strength when I am weak. Within the last week the emotion has been overwhelming, I cannot believe that God trusted me to be a mom of a special needs child. What a compliment that He thought that I could handle this huge task!

I look back on the last 21 months with Mia and it gives me hope. I think of all of the things that I used to worry about and pray about that are not even an issue anymore. When I first realized that she should be holding her head up and she wasn't she was about 4 months old. I walked out to the car because we were getting ready to leave and I just burst out crying and said "Can't you just hold your head up?" As I put her in her carseat I leaned over and gave her the biggest kiss and told her I was so sorry. I felt so bad for saying that to her. Later that day I called my mom crying about what a mean mommy I was and I told her what I said, but then I told her that Mia not holding her head up was my problem, not Mia's. She didn't care if she could hold her head up she was happy, hanging head and all. It was then that I realized that my reactions to her and her (dis) abilities would have a huge impact on her. I have to teach her to be happy with what she can do, have self esteem and to love herself. No matter the situation there is always someone who is smarter than you, faster than you, prettier than you etc. On the flip side their is also someone who has it worse than you. Be thankful for what you have. I used to worry a lot about Mia drooling too and I thought oh no kids are going to make fun of her! I would cry and cry...for what? She doesn't drool anymore (but she does spit...bad habit). She used to make this screetching noise with her throat and I thought it was so cute! One day I stopped and thought what if she is spending the night at her friends house and she makes that noise, they will laugh at her. I cried and cried, for what again? She doesn't do that anymore, she makes a similar noise to be funny though.

So back to the email...it was basically an e-mail of hope. One SN mom to another. One who's been there done that, had the same pains and worries and now has an almost 5 year old, who, yes still needs therapy but is entering *typical* kindergarten!!

I Love Mia's New PT!

2008-05-20T08:37:00.002-10:00

I have to make this quick because we are waiting for the teacher to come and play with Mia. I am interested to see what this is all about. We didn't have a teacher as an option for therapy in Hawaii. This is through EI. They are giving Mia a teacher until they have a space for OT for Mia (which isn't until July). I will post the teacher visit information later on!!

Mia had her PT eval today and I loved her! She was great, very nice and had ONLY GOOD things to say about Mia and her abilities!! It was a shock when her first question was: "When was Mia's diagnosed with CP?" I said...she's hasn't been, then she showed me a paper from the new doctor that said DX: CP. I laughed, I probably sounded like the mom in denial. I explained to her that this doctor doesn't know her, didn't even see her medical records and saw her for 5 minutes just to give us referrals for service. She agreed that Mia didn't have a lot of CP characteristics. I am aware that a CP dx is in Mia's future. I would be surprised if they didn't dx her. I am just glad to be buying time without the dx right now.

The PT commented on how wonderful Mia's range of motion is, how she doesn't have hypertonia and that she moves very well. She did mention she is a little slow in her movements, but thinks that she will get quicker in time. She is going to see her on a weekly basis, but she says that Mia needs to be in a play group more than in PT!! That was nice to hear. I am going to sign Mia up for the My Gym classes, but I was waiting for the therapies to start so I could see what kind of a schedule she would have. Mia will start the My Gym by Monday for sure!!

I am sure there will be other things that I think of about today's appointment, but I am just on cloud 9 that I can't remember everything!! I do see how all of the frustration and heartache I was having has paid off and things are once again coming together. Thank you God for always taking care of us!

Ok, gotta run and get ready for the teacher!!!

Not Fun...

2008-05-20T03:44:00.002-10:00

I went to Vegas for a friends bachelorette party. I didn't want to go, but I am a bridesmaid in her wedding so I did feel obligated to go. I tried my best to have fun and I think to everyone around me it did appear that I was having fun.

The worst part about it was having to leave Mia. I am not ready to leave her overnight like that. I left at 10:45AM and was home by 3:30pm the next day, but it was too long for me! The brides mom works for Southwest so we flew round trip for free and it is less than an hour flight so that was good.

I don't get it though. We are all almost 30, close to 30 or over 30 and the way they acted is just not my style. I am not going to write it all out, but it was pretty trashy in my opinion. I am not into *slutty* I guess...call me crazy!

Glad to be home and near Mia. She is getting to the point where she no longer wants to be fed. She insists on feeding herself. I am glad that she is making this transition into becoming a full self feeder. She eats better when I let her do it and she is doing pretty good with it. She loves the water and we have a small pool set up for her. It's been so HOT so she has gotten to swim a lot. She refuses to go in naked or with just a swim diaper. It's funny though because in the house lately she wants to be naked. She is able to get herself into a standing position in the pool by pushing off the ground and hold herself balanced for a few seconds. I think it is great exercise for her!! I don't recomend Huggies Swim Diapers. I have a fricken stock load of those things too. I bought tons of them on clearance last year because Mia did aquatherapy and they were such a good price. She was outside of the pool yesterday standing there and pee just shoots straight out of the diaper. She might as well swim without them. I hope they hold in the poo!

WOO HOO!

2008-05-16T11:06:00.002-10:00

Yay!! Mia had her first therapy appointment today. It was for the OT evaluation at the rehab hospital. She has the PT eval. on Tuesday and we are still waiting to hear about speech. I am so thrilled that Mia finally started therapy! She is going to go once a week for OT starting Wednesday!! They also gave us some exercises to do at home...back to the therapy BALL! I got home and EI called and said the OT for them is booked until July! Oh my, 1 step forward and another back! The EI is going to send a teacher to the home once a week in the mean time to play. So not a total loss.

I am so thrilled that Mia is finally starting her therapy. She did good today and they thought she was funny, smart and cute!! The OT did mention how weak Mia's trunk is, but offered more activities to do at home to increase her strength. I know that she won't walk until she has more strength so we will work as hard as she can to get her stronger!!

OT wants Mia to stop wearing her SMO's until we meet with PT on Tuesday. They may not be fitting properly because she is getting sores. Poor little honey. I just thought that they started to bother her a little because she has been walking more.

My appointment for my therapy is going to be on May 29th. I am really looking forward to talking with this lady. I sure hope it goes well. I am nervous about meeting with her though. I am very sensative and I often have a hard time discussing things without crying. I was told when I was 10 years old that I cry as a defense mechanism so I don't have to talk anymore. Well, you know what...I never talked to that idiot therapist again after that. I want to talk and I want to get it out there, I cry because the pain is that strong and having to say these things out loud validates my feelings and makes them real. I would much rather talk about them and get them out in the open rather than carrying this weight around!

Therapy

2008-05-15T05:36:00.003-10:00

Yeah!!! Mia's getting even closer to therapy. The OT/PT called yesterday to set up her evaluation appointment at the rehab hospital. I called them back, but the person isn't in yet. I will be calling soon and I hope she will be seen next week!! Things are coming together. It worked out that she didn't have any appointments this week since she has been sick.

Mia is now 21 months old. I cannot believe how fast time flies once you have a kiddo!! The other day I held her while she fell asleep and I didn't want to lay her down. Soon she will be too big to hold and cuddle like that. She is so funny too. She is obsessed with shoes because of me. I've always liked shoes, then when I knew she was going to be a girl the shoe frienzy began. I loved how cute those tiny little shoes looked so I would buy her tons of shoes. Most she never even wore. Anyway, the other day I tried on a pair of flip flops for myself and she looked at me and lifted up her foot and tried to take off her shoes so she could try on the shoe. I bought her a pair of Roxy flip flops in her size as play shoes because she loves shoes, but she gets nervous and stiff when she has them on. It's strange. Ever since she got her SMO's I have wanted her to have a pair of white sandles to wear with dresses. I bought her a pair of white Pediped shoes and they were cute, but not sandles. Yesterday I found a pair of white Stride Rite sandles, they are so CUTE and they fit with her SMO's. Even better they were mismarked on clearance for $8.99 but they were not supposed to be!! I am so thrilled!!

I am having a hard time. My friend is having her bach. party in Vegas this weekend and I am supposed to go...I am a bridesmaid. I don't want to go. I am not into parying, drinking, strip clubs, etc. I said before I am a prude. I am not uptight, well I don't think. I used to party and drink, I am just not into anymore, especially since I am a mom. I want to cry thinking about leaving Mia for the night. Everyone is going for 2 nights, I said I would go for 1, but I dont' want to. I will be gone just about 24-26 hours, but I haven't left her overnight since her month stay in the NICU. I know she will be fine and safe, I just hate to be away from her.

I am going to finally see a therapist. I have so many things that I need to talk about. I blog about a lot of them ,but somethings are just too painful. I can no longer continue to live with this much pain and the pain of keeping it all in is just too much for me to handle. I stayed up for 2 hours just crying and crying last night. My eyes are swollen and my head hurts. I hope this lady is worth my while.

CVS

2008-05-13T14:42:00.003-10:00

Ok, I don't normally post about my CVS shopping, but this is just too good not to post! I am sorry I do not have a picture to really capture the greatness of my bargains today! I am new to CVS, but it's so fun and addicting!

I am having trouble though because I have enough toothbrushes to last me and my husband a couple of years. I have enough razors, toothpaste, shampoo/conditioner, baby wipes, etc to last me at least 18 months. What am I going to buy now?!

Ok, here is what I got today:

2 Pampers 160 ct each wipes $4.00 each minus $2 manu. coupon
2 Hawaiian Tropics Lip Sunscreen $1.99 each & earned $10 ECB's
1 Johnson's Buddy's Soap $0.99, used $.99 manu coupon making it free!
1 Crest Spin Brush $4.49 & earned $2.00 ECB
Total before tax coupons and ECB was $17.46-2.99 manu coupons $14.47
I used a $5 cash card which was really an ECB but it didn't print so they gave me the cash card on Sunday bringing the total to $9.47 minues ECB my total out of pocket... 6 cents!

I paid .06 out of pocket and I got $12 ECB back!

Just Call Me a JINX!

2008-05-12T18:44:00.002-10:00

Ok, so yesterday in my blog I was explaining how Mia is almost 21 months old and has only had 1 cold. Well, I think I jinxed the poor baby. She woke up this morning with a COLD! She has been sneezing and lots of gunk is flying out, she is a bit stuffed up to! I guess I spoke too soon!! She's a trooper though, she still has her spunky attitude and her sweet disposition!!

Mia will be 21 months old tomorrow (5/13)! Time sure flies. Finally she gets to ride facing forward!! I turned her car seat around today...good thing too with all the sneezing I wouldn't be able to reach her rear facing! She is about 21 pounds, but I opted to keep her rear facing because it is safer. In Europe (I've heard) they make all kids remain rear facing until age 3 regardless of weight. I was forced to put Mia forward though, her legs were getting way too long to continue to sit like that. Even with the car seat fully reclined her legs were all squished!!

Happy Mother's Day!

2008-05-11T19:51:00.002-10:00

It's almost over here in Southern California, but I hope everyone had a wonderful Mother's Day!

I had a pretty good day. I celebrated my second Mother's Day this year and again I was without my dear hubby. He sent me (well, Mia did...) some flowers in a pretty pink (my favorite color) vase. They smell really good. I actually thought he forgot about Mother's Day this year, but he didn't. He did ruin the surprise though because he called and asked if I got the flowers and they hadn't been delivered yet. They came late, like 4 in the afternoon. They were very pretty though. I hope next year Mike will also be around for Mother's Day. I am missing him like crazy right now!!!

The Let It Be Foundation..

2008-05-11T19:18:00.004-10:00

On Saturday I did my first 5k. It was actually a 5K plus, it was probably 1/4 mile or so longer than a 5k, but I don't really know...I know that I hit the 5K marker and we still had to keep going! Luckily this was just a fun 5k walk/run so the pressure wasn't on me to run the entire thing. I would have loved to run the entire thing, but even though it's just a 5K I wasn't ready for that. Aside from the fact that I just started running again about a month ago, I had a week off due to knee issues, but all of my running has been on the track. Well, I do run the stairs, but that isn't much compared to the hills that were on this 5K. My parents live in a city called Chino Hills and the hills part is no joke. The route we took was more up than down and yes what goes up must come down, but not this route. It starts out with a slight grade up, it gets steeper and then it levels off, you go a slight grade down and then back up again. You get the point, it was HARD for me! I am going to look into getting a jogging stroller so Mia can join me next time.

I did this run for the Let It Be Foundation. It is a local non-profit organization that raises money for families of terminally ill children. They give the money to these families to try and restore some normalcy back into their lives. Money for the movies, a coffee, a housekeeper, etc. The foundation is in memory of their daughter Karla who died from a brain tumor. She was in high school when she found out she had a brain tumor and within months she passed away.

Before the run began they called up some kids that we were supporting. They help families with children up to 17 years old. There was 1 girl who was up their because she was in remission, 1 boy also had cancer and it was his 14th birthday. One girl who was a friend of Karla's was celebrating her 18th birthday. She told her friends and family that she didn't want a party or presents, but she wanted everyone to celebrate her birthday by doing the 5K. It was a very emotional morning, hearing Karla's parents speak was heart breaking. Then they bring up a little boy 2-3 years old, that was just so hard to see. I looked at his mother and thought about how she must feel dealing with a terminally ill toddler. I told my sister (who was with me at the run) how I couldn't imagine going through what that mother is going through. I told her it makes me feel really bad when I feel sorry for myself that Mia can't walk/talk and is delayed and then another mother is dealing with a terminally ill child. It gave me a new outlook on Mia's life. She is very healthy, in fact she is almost 21 months and beside her month stay in the NICU after she was born she has only been sick 1 time! Yes, I feel sad when I see other kids her age walking/talking etc or when I think about what Mia's future will be like, but I have to be thankful for what I do have and for what Mia can do. She is a very smart, determined, hard working and happy little girl. Ofcourse I think she is just adorable too!

I've learned a lot of things about myself in the past couple of weeks. I have a lot of work to do to improve myself, but acknowledging it is the first step. I have come to realize that I am much more negative than I thought I was. I do focus on the negative stuff too much. I have a lot of patience with Mia and some stuff, but with other things I am quick to 'fly off the handle' well, not off the handle but I can have low tolerance for some people/things. I like to blame it on the 'spanish' that's in me, but that's no excuse!: ) I want to be the best mother for Mia and the best wife for my hubby.

Drum Roll Please...

2008-05-09T04:55:00.002-10:00

Before we left Hawaii Mia had blood drawn. This was requested by the neuro to check a variety of things including some functions (liver, metabolism, etc) and genetic testing. We knew the next day that the blood work testing the fuctions and lactic acid levels all came back normal which was a relief, but we kind of expected it. Basically he wants to start ruling things out. He said reading Mia's history, etc a doctor most likely would want to come in and give her a CP dx, but based on her MRI, what she is doing (though she is globally delayed) he just didn't feel comfortable giving her that dx. He wanted to make sure that her traumatic birth hasn't over shadowed something else that may be wrong.

I was looking over Mia's medical records and one of the PT's stated in her report that I told her that Mia was given a CP dx, which was a misunderstanding on the PT's end. So I called her to ask her to ammend it. She is going to and then she told me she would have the neuro call me. DRUM ROLL.... So he called and the genetic testing also came back NORMAL! Thank you, God!!! He said well, all of the blood work including the genetic testing came back normal so there we have it. He said that this completes this set of testing but her new doctor may decide to do more testing in the future depending on her abilities etc.

I was thrilled (not surprised, but relieved). My first thought was YEA! Then I was like, great we have no DX still. Then as I smacked myself, I said wait Tara you never wanted a DX in the first place get a grip. I feared that having a DX would hinder things. I felt that a label might make it difficult for me to have faith that she will 'catch up' someday! I still know that a CP dx is still a very real possibility and I know that in many situations having a dx can be helpful. I know all of Mia's therapists and new doctors keep trying to get me to give them a dx, but I stand firm and tell them she has not been given a dx.

When things are so upside down for me and Mike right now and I see all of the prayers that have been answered for Mia I have faith. I have faith that God will see us through yet another seperation. He has not left my side through all of the trials with Mia He won't leave me now!

Prayers Please

2008-05-08T04:38:00.002-10:00

Being a military spouse just plain sucks sometimes! Right now is one of those times. Mike has been in the Navy for 10 years and he has at least 10 more to go. We have been together for 7 years, married for almost 4 1/2 years. Our relationship has stood many trials. At different times we've both wanted to throw in the towel, but we've made it through. Our longest seperation was 9.5 months which I don't know how I made it through. I lived alone not even near any family. It was very difficult. I had a routine, I put on a smiling face throughout the day and pretended everything was ok and once I got home from work I cried and cried, for hours. It helped me be able to wake up the next day and fake that everything was just great.

I thought that this seperation wouldn't be so bad since he wasn't deployed, but just in another state for school. It has been just as hard if not harder than when he was actually deployed. He becomes very distant when he is away. That is his way to deal with things...ignore it. A typical week for him would be to email two times and call once or twice. Sometimes it is even less if he is in a bad mood. I would love it if he would call and email everyday. I know it won't happen, that's not him. He is doing better than before, but for me it's still not enough. He is having a super hard time being away from Mia. To deal with it he just tries to block her out of his mind. He did web chat with her the other night though, she loved it! She's a daddy's girl.

Please say a prayer for us that we find the strength to make it through yet another seperation. Please pray for all of the military that is seperated from their husbands, wives, children and other family.

Being Over Sensative

2008-05-04T04:02:00.002-10:00

UGH! Last night I went with Mia, my parents and sister to my dad's friends house. It was a surprise birthday party. I didn't know anyone there and nobody knew me, but one lady and her husband knew me from when I was little, but I didn't remember them. Anyway obviously these people don't know Mia and her delays etc. She was really shy at first and stuck to me like glue. Once she was comfortable she was being her usual self. Then the questions & comments came. I know that these people were not being mean at all, but I am over sensative. First, does she walk?...NO. Later it was:How old is she?...20 months, followed by: Oh let's see, that means in the next 6 months she will be speaking in full sentences. ME: Laugh, yeah I hope so. (right). Later Mia was sitting on a chair finger feeding herself some pasta and it was: Wow, look how slow she moves. Does she always move that slow? That one hurt badly, she is very slow in her movements, but it's hard when someone (a stranger) that only saw her for an hour noticed it. My dad just piped up: She's cautious. I later told my mom that was hard to hear but I knew it wasn't said to be hurtful, just an observation. The last one was directed to my mom: Did you get to see her be born? My mom just said, no I came the next day. Which is true and that was planned even before Mia's birth was so traumatic. It hurt because no one got to see her be born, I was put to sleep, my husband was left in the dark (left in the hallway not being told anything) and then she was practically dead when she was born (not breathing, totally limp). I know this because Mike walked to the OR and was outside the window and saw her right after they pulled her out! It was very painful for him to see and that vision still pops into his head at times and is hard on him still.

I know that this is just something that I am going to have to deal with. The older she gets and the further behind she becomes the more obvious it is going to be. I have to be strong and not show that I am bothered by it, I would never want Mia to feel bad about it.

I'm Happy/I'm Sad

2008-05-02T05:08:00.004-10:00

I'm Happy because Mia is one step closer to therapy.

I am sad because once again I had to face the reality that Mia is not a 'typical' toddler.

Yesterday I had the intake appointment with the Early Intervention program. It is not through Easter Seals (like it was in Hawaii) so it is a little different. It is differnt for the better though. I thought this was just the intake (paperwork) appointment, but they actually had a teacher come to do the evaluation and they gave me their report right on the spot. I heard bad things about the EI program in this area and because I had to wait so long for an appointment I figured it wouldn't be that great of a program. I was thrilled that so far the program actually seems very good. I got almost everything that I wanted and I didn't have to fight for it. Mia was going to get Speech Therapy, Physical Therapy and a teacher 1 day each for 1 hour each. I asked about the Occupational Therapy and she was going to check on it because of the number of hours (or something...). About 10 minutes later she asked me if I would be okay if she took the teacher out of the home and replaced it with Occupational Therapy. I ofcourse want her to have everything, but I would much rather the OT than the teacher so I said yes!! I should be getting a call within a week or two to start setting the appointments. PT will come to the home, but for the OT and ST we will have to travel, but I don't mind!!! I also FINALLY got the approval for Mia to have private PT,ST and OT at a pediatric rehab!!! For the OT and ST she is approved basically for 1 session each a week for a year. The PT for some reason they only approved 1 session a week for 5 months, but they will approve more if she needs it!!! If I can find a place for pediatric aquatherapy they will approve that too!!! I am so happy, happy, happy that after all of the frustration I had with trying to get therapy that it is paying off!! I wanted LOTS of therapy for Mia and we got it!!!!

I was so happy after the appointment because Mia was going to get the therapy that she needs, but I was so sad too. Sad that she even has to have all of this therapy. Sad that the first list of questions were yes or no questions relating to speech and I had to answer every single one with a NO! I almost started crying (like I am now). Then it came to "why did you have a c-section?" I've answered this question many times and even more lately with all the new doctors and therapists I have talked to. Normally I can answer it without having to think about it and I won't cry. I was already sad about all the NO's that I had to take a deep breath so I wouldn't cry when I told the story of Mia's birth. Here is the breakdown of Mia:

She is 20 months 2 weeks and 4 days
SOCIAL/EMOTIONAL: 12 months
ADAPTIVE/SELF HELP: 12-15 Mos; 16 Mos; 16-19 months (very scattered)
FINE MOTOR: 9 months
COGNITIVE: 9 months -GULP, but I dissagree
COMMUNICATION (RECEPTIVE & EXPRESSIVE): Michigan= Rec. 12 mos Exp. 12 mos; REEL #3 Rec. 16 mos Exp. 8 mos
GROSS MOTOR: scattered 9-11 months

Ok, I know she is globally delayed, but this hurts so much to hear, read or even think about. I hate these appointments. On a daily basis (if you take out therapy sessions) I feel Mia is 'normal'. When we have these appointments I have to face it, she's not a typical kid. What is 'normal' to me isn't the norm. I am so proud of her for what she can do, but I am so sad for what she can't do. Sad for her and sad for myself. Sad that things are so much harder for her and she has to work so hard to do things that come so easily to other kids. I hope and pray that one day she will 'catch up' but the truth is after these kind of appointments that hard for me to see. If you can't see it, you can't achieve it, right? One of her goals is to stand alone and kick a ball. I would love to see her do that, but it's hard to invision!!

I am very upset about the fine motor. I asked so many times in Hawaii for Mia to have OT and was told so many times, she didn't need it. When I realized she did need it I was already fighting for the ST that they didn't want to give her that I didn't fight for the OT. I am mad at myself for that, I let Mia down. If I don't fight for her no one else will.

So I am not a drag I want to end on a happy note. I was told that if Mia does something more than 50% of the time to consider the answer YES. I had to laugh, I explained to her that Mia is very stubborn, there are things that I know she can do IF SHE WANTS TO. She actually beleived me. When I would tell the care coordinator and therapist that in Hawaii they would look at me like I was crazy, or making things up. So the teacher asked Mia to touch her head (which is something she CAN do!) and she wouldn't do it. The teacher said: " Can you ask her to touch her head? When I asked her she just looked at me (which she will stare at you like you're nuts)." I said I would try but if she doesn't want to do it she won't. Well, she wanted the teachers suitcase full of toys so she wouldn't even look at me. I gave up. A little while later more questions: "Can Mia clap her hands if you ask her to, without showing her?" (Mia at this point was playing with toys...paying no attention to us). I didn't even get a chance to answer and Mia looked up at the teacher and started to clap!!! The teacher laughed so hard! Then she said "If you tell Mia you smell with your nose..." And Mia started pinching her nose!! She asked the question: " Does Mia perform for social attention?" NO! Then all of a sudden Mia starts clapping with the loudest clap I have ever heard from her, rolling her hands (for roll em and roll em) and just plain being silly!! I said I guess I lied when I answered the question!! Mia was on my lap because she kept trying to take the teachers paper. I went to put her back down and I pointed at the doggy and said, go get the doggy, woof, woof. As I placed her down she said what sounded like DOGGY!! The care coordinator and the teacher both at the same time said DID YOU SAY DOGGY?!! I said well she is pulling out all kinds of moves that I haven't seen, next thing you know she will be walking down the hallway!!

Mia's Walkin Device

2008-04-26T14:09:00.002-10:00

Here is the device my dad made for Mia. We are still not getting any therapy. I haven't posted anything new about it because it is the same trouble that I have been going through for a few weeks now. This week was not much better than last week. Maybe worse.

Better Week...

2008-04-22T04:57:00.004-10:00

I don't like when it seems like I am only focusing on the negative in my posts. I blog to get things off my chest, but I don't think I am a negative person. I am a dreamer for sure therefore I think I am more of the glass is half full kind of girl. I know there are many reasons for my negative attitude lately, but that is no excuse to walk around with my head hanging low. It's a new week, new attitude and hopefully things this week will be better than last week!
I have my car now, which is great. I don't mind staying at my parents house and I am grateful for being given this opportunity to stay here. I will be able to save up money and pay off some bills. Mike and I will be buying our first house soon. I hope to have one picked out before my 30th birthday (the end of September). I have been looking, I know the first house we buy won't be my dream house, but I still love to look at the homes way outside of our price range. I don't have as many stipulations as I once did on what I want my home to have. The main things are a yard (which is hard to come by in CA especially in the newer homes we are looking at), a minimum of 4 bedrooms plus a loft (to be used as an office)at least 2 full baths (3 would be better)2 car garage (3 would be great)and a wonderful kitchen. I have seen some homes that I love, love, love that have a butlers kitchen and a casita (1 bed/bath guest house). They are currently out of my price range, but hey, the market is still dropping, there might be hope! I have a couple of homes picked out. Once DH gets the VA loan paperwork processed I will make a trip to San Diego to view some homes. DH said I can pick it all myself. I won't though, this is too big of a deal for me to decide alone. When in reality even if he is there, it is still what I want!
Mike made it to his school in VA. His dream as a little boy was to live in a hotel. Well, for the next 86 days he will be living in a hotel. The pier Diem barracks were full so he is staying at the Marriot. He said it is so nice, it is like a 1 bedroom apartment, has a full kitchen, etc. I better make a trip out there soon!!
Finally after nearly 3 weeks of calling on a daily basis Mia has her Pediasure. Her dr. gave her a rx for 4 cans a day (like 4 cases a month) and the place was taking forever to get back to me to fill the rx. They dropped off one case yesterday and the other 3 cases will come UPS tomorrow. What a waste of money to send the Pedi through UPS especially when they just came to my house. Anyway, who knows what will happen next month with the Pediasure. This comes from a home health care place, but the new ped wrote a regular rx. I suppose I just take it to the pharmacy. I am not really sure, I hope it isn't generic though. I also hope I don't have to pay either. I am not supposed to, but we will wait and see. I will not worry about that for now.

I am still trying to get Mia into therapy. I feel very worn out and frustrated. I know once the referrals go through things should smooth out. Right now Mia's speech needs I think the most attention. She is forming bad habits, she grunts for everything she wants, throws fits if you can't figure out what she wants and she waves her hand (trying to whack you). I am thrilled to see her personality coming out and I am glad to see she has an opinion, but I want her to learn her words. Less frustration for her and me!

I will post pictures soon of Mia's walking device grandpa made for her!

Isn't It Strange...

2008-04-18T13:56:00.004-10:00

I am so tired of dealing with IDIOTS! A week ago Mia went to her new ped. The office staff seemed very clueless and the doctor wasn't much better. I will be switching her to a new ped. But while I was there I requested referrals for PT, ST, OT and aquatherapy. I recvd a call from a place that said they recvd a referral for OT. When my father spoke to them he could tell they didn't know Mia was a toddler (his first clue, they called and asked to speak to Mia). When they realized her age they said they weren't sure they could help. I called back and left a message. They returned and left a message referring me to another place. However she is referring me to a place for OT and the insurance auth for this was for PT. So, dealings with an idiot continue. I recvd a call from Mia's ped office and they said I could come and pick up the referral. When I got there it was just the 1 referral for the PT that I already knew about. I questioned her, she argued. She then lies and says the other services were declined. I told her that wasn't true because when things are declined I get a letter in the mail and I didn't. I got the letter for approval of PT though. She then tries to tell me that this PT place has to eval her for ST. I said her physical ability and her speech are 2 different things and this PT place doesn't do or have anthing to do with ST. I requested her to process the requests again.

I get home and call the insurance. My suspicions were correct. They never recvd a request for ST, OT or aquatherapy. The girl from the insurance then tells me that her son is 2 days older than Mia. Then she asked me why Mia has PT. I didn't think anything of it. She said, "Well, the reason that I ask is because my son has PT, he had a stroke early on". Isn't it strange, when you feel like you're the only one in the world dealing with this stuff and then boom it smacks you in the face...you're not alone. We got to talking and I told her about a wonderful site BBC, CP board. She said she never even knew babies could have strokes. I told her there are a few moms on the boards that have children with similar dx as her son. His right side is affected. I was a bit jealous to hear that her son devel is up to par, with the exception of his right side. Of course I don't want anyone to be delayed, it is just me being a baby about my situation. I know that I would much rather have Mia with her delays then to have her stillborn. I know that I have been blessed and prayers have been answered.

I call the ped office back and speak to the idiot again and her story changes again. Now she said, well we put in the referral all at once and they processed it wrong. I said, fine can you resubmit the referral since they said they don't have it. Why can't people work with me, not against me? I can't wait to get to SD Childrens Hosp. I have a feeling things will be much smoother there. That is 4-5 months away though. In the meantime my dad is building Mia something to help her balance and practice walking. I pray this will help her be more confident and balance better.
I also got a call from EI, what a freaken waste of time. They won't even come for an eval until May 1. She will never have services at this point. Between the idiots at the doctors office and EI's inability to provide services we are working backwards here! Back to square 1. I have a migraine so I could not deal with anymore phone calls today. We are still without therapies and pediasure, but we have each other!

Trying to Stay Positive...

2008-04-16T14:07:00.003-10:00

But it is so hard. I know Mia has come very far. I know that she has surprised the doctors and made great progress over the past 20 months. I am just having a very hard time focusing on the positive right now. I feel very drained emotionally. I feel very alone though I am in a house full of people. I feel like I don't have anyone to talk to that can understand my feelings. My mom isn't a good source as I don't think she can fully accept and deal with Mia's delays.

It breaks my heart. Mia wants to walk so bad and she just doesn't have the strength and balance to do so. She tries so hard and loves to finger walk. It just makes me feel so sad for her because things don't come easily for her. She doesn't know any better so I try to not make a big deal about it. She's a very happy girl. She has zero balance. She can not stand at all without support. She falls without support so I know walking is still a ways away.

Her not talking is bothering me more and more everyday. I think the talking bothers me more than the physical delays right now. I am sure if she was doing more talking then the physical delays would bother me more. I just wish she would talk. I just don't understand why she won't talk. How do you teach a kid to talk...that's the million dollar question.

I find myself feeling more and more robbed each day. I know this is wrong. I know God has a plan for Mia and He is taking care of her (and me). I just can't seem to get myself off of this pitty pot that I seem to be on.

Still No Therapy and No Pediasure

2008-04-15T05:09:00.003-10:00

I am so frustrated and feel very sad today. I think part of it may be PMS but who really knows since I don't track my cycle. I am also feeling very sad after about a girl named Karla. She was 15 years old when she found out she had an inoperable brain tumor. She died about 3 months after finding out. Her and her parents started the Let it Be Foundation. What an inspirational little girl she was!!!! She attended the high school that my little sister does.

Anyway, still no therapy. As far as the therapy through EI I have come to realize this is not going to be a very helpful therapy for Mia. It wasn't the greatest quality in Hawaii and here it doesn't appear to be any better. I haven't even had a return call to set up the in home evaluation. I have some colorful 4 letter words to say about this!

For private therapy I have the ball rolling. I was not finding any places local that did pediatric therapies and if they did they didn't accept our insurance. I called my insurance and first spoke to a rude little snot who was less than helpful, but after calling back I spoke to a wonderful girl who gave me all the information I needed to know. I want Mia to be seen at Children's Hospital in San Diego once we move there. I want to start her with the devel. ped and ped. neurology right away. For her therapies though that is too far to drive (as I want her in lots of therapy and the drive is close to 1.5-2 hours) so I am looking for some close to home. Good news is, most likely I will be able to have Mia seen full time once we get to SD at Childrens. I would feel so much better if she had civilian doctors verses military. Not that I don't think the military dr. are good, they often tiimes are very young and still learning. Anyway, when I spoke to the helpful c/s rep she informed me to just go to Mia's ped and request the therapies that I want and the ped will put in the request. She said she also didn't see any that were on our insurance plan, but they would refer me to places that do pediatric therapy and the insurance would still cover 100%. That was a huge relief.

We went and met with Mia's new ped on Friday. Once the referals go though I am changing. I didn't like the place or the ped. The girl in the office wanted Mia to stand to be weighed. I explained to her that she can't stand. She then asked how old she was. I said almost 20 months. She said, so almost 2 right? I said well if you want to say almost 2 you can but she is closer to 1 and a 1/2. It was like well, if she is close to 2 she should be able to stand on the scale. It was stupid. Then Mia freaked on the non-digital POS scale they had so they never even got an accurate weight. She then asked me to get on the scale with her. Well, I shut that down right away.

Mia also gets Pediasure through Apria Health Care. With her Hawaii doctors rx she should be able to get 1 month supply here in CA. I've called everyday since last Monday and everyday they say they will call me back and everyday they don't call me back. Mia doesn't really eat enough to gain weight so the Pediasure helps get her the calories, protein, etc. I of course went to the store and bought several bottles of Pediasure, but it shouldn't take this long for her to get her supply. We will see what happens today! I wish this transition was smoother. I guess if Mia wasn't needing all of this extra help it would have been. I shouldn't complain. At least we are here safe and sound.

On a side note about me. I need to lose weight (duh---that's why I wouldn't step on the scale). Anyway, I lost a lot of weight last summer only to gain it back plus 5. Last week I started running. I love to run and I used to play soccer (lots of running). It is so hard when you first start to run but once you get into shape running is so much fun. Right now me and my sis go to the track and run and then do the stairs. I want to be able to run 5-6 miles 5 times a week with Mia. I don't have a jogging stroller right now, but once I get into better shape I will invest in one. I had not ran in about 10 years (since high school soccer). Here and there I would run once or twice and I wanted to die so I gave up. I don't want to be the fat out of shape mom. Plus, I was skinny my entire life, but over the past 7 years I have gained a little more and a little more. I would blog more about my need to lose weight, but it is actaully very embarassing to me.

For the Deal Seeker...Paul Mitchell

2008-04-12T08:49:00.002-10:00

For you ladies who love to get the great deals I have to tell you about Paul Mitchell. They are changing their bottles so they are clearing out the old to bring in the new. I stocked up and saved about 65% off retail for my shampoo/conditioner. Since it was so cheap Mia even got some I bought her 5 bottles of Paul Mitchell Kids shampoo for $12.50 (these were to 10 ounce bottles).So head out to your local salons and see if you can get the great deals I got.

FRUSTRATION!

2008-04-09T04:58:00.003-10:00

I am so peeved right now. I heard that the early intervention program in this area was bad and hard to get therapy from. I was told in Hawaii that because Mia had a new IFSP we shouldn't have a break in therapy as they could base her therapy for a month off of her Hawaii IFSP. Well, that is a bunch of bull. I called EI Monday and left messages for 2 people. One called and said she was the wrong one to call and the other called and said she had my information and would pass it on to the care coordinater and she would call me in about 2 weeks. I flipped. It got me no where. She said they would hope to start therapy in 45 days or less. I am just so mad.

I wouldn't be as mad if I could find a place to take Mia to for private PT/ST and aquatherapy. I thought I had a hard time living in Hawaii finding this stuff but I am findind it more difficult to find out here in California. I want Mia to be in lots of therapy. Every place I call said they don't work with kids her age. I have searched all over the internet and can't find any place! I am so mad!!!!!!!!!!!!!

I must be mad since I kept typing I AM MAD! It is just so frustrating to even have to be searching for a place to take her and then to keep facing rejection is just too much for me. I want to flip my lid!

This is my Normal

2008-04-05T05:55:00.002-10:00

Ahh to be able to blog again. It is so wonderful, I was thinking about how much I like to blog while I was showering this morning. It was just over a month ago that I decided to try it out. I haven't really told anyone (you girls of course) about my blog, I mentioned it to my sister and that is it. I haven't told DH yet, though I was close to telling him the other day. He knows I talk to you girls on the BBC boards and stuff and he can see that it has really helped me emotionally.

The next 6 months is going to be a huge challenge. I am going to *live* at home with my parents while DH goes to school. I will be in CA and he will be in VA. We do plan to visit and we can webchat and talk on the phone. He is not looking forward to leaving our little Mia, but this is our life for at least the next 10 years. He is staying in the Navy. He is at the 10 year mark now and is going to make it a career. The challenging part is adjusting to living in limbo. I don't have my own stuff, just the limited amount that I packed in a suitcase. In this house besides me and Mia is my parents and 2 teenagers (my bro and sis). So we have a houseful. There isn't a computer shortage though I am leaning towards getting my own laptop so I can use it wheneva I want to. We are going to buy a house in San Diego once DH returns from school. Staying at my parents is so I can have the emotional support with Mia and of course to help save some money. It is just going to be hard being displaced for so long. I guess that will make me love my new place that much more.

Ever since Mia came home from the hospital everyone always tells me to treat her as if she was *normal*. For the longest time I would reply I know. But that is so not true. I don't know. This is my *normal* I have 1 daughter, Mia and all I know is countless doctor appointments, therapies and researching more and more what I can do to help her. I now get offended when people say that to me. What the he€€ does that mean *normal*? Following a week ago Friday's wonderful *results* appointment I was feeling so good. Now I feel so in limbo again. It was so nice to not hear the diagnosis that I was expecting to hear. On the other hand, not to be a complainer but the unknown is really bothering me. I kind of feel like maybe now we are just prolonging the inevitable...the CP dx. If that isn't the case then what is it? If we ruled out everything then what? Now, I feel like I don't have an explanation. She is still delayed, still doesn't speak. I am trying to remain positive and at times I forget that she is approaching 20 months and she still isn't walking. I forget that almost all kids her age are walking and talking. It has become *normal* for me to have to carry her around.

Mystery Diagnosis

2008-04-02T20:34:00.003-10:00

I am so sorry that I am so late in posting this update. I have good reason!! We had our house packed on Thursday (including my MAC) so we were left with DH's laptop and a resort (Hilton Hawaiian Village) with overpriced Internet access. We were also exhausted and had no time to be online. I have missed blogging and missed my internet and blog buddies. I will say it brought a smile to my face, joy to my heart and a tear in my eye to know that people were thinking and wondering about me and my Mia. Thank you for making me feel so special! I have thought about you girls everyday and I knew that you would all be waiting for the results of the MRI.

I was so prepared (or I thought) to hear the words "Mia has Cerebral Palsy" and hours before the appointment I kept repeating it to myself in my head to gauge my reaction. Could I hear these words and not cry? Have I already accepted it and now I am just getting the official confirmation? What would hearing this diagnosis do to me? For the longest time I felt that I was not in denial about Mia being at risk for CP. I felt like through all of my research that she just didn't seem to fit the characteristics of any form or mixed form of CP. Yes, she is globally delayed and hypotonic, yes she had a brain injury which puts her in the risk category for CP. One PT said she didn't think Mia had CP either. The other PT basically told me Mia is Mia and will do what Mia is going to do with or without the diagnosis or label of CP. At that point I realized I was in denial. I didn't want to believe that Mia would have CP.

From the first MRI at 9 days old I have prayed almost every single day for Mia to have healing and for a miracle for my little angel. I made it my mission to make my Mia be the girl that "surprises all of the doctors." I of course also gave thanks to God for allowing Mia to have the opportunity to live life and praise of thanks for allowing me the opportunity to be Mia's mom. Over the past 19.5 months I have seen God working on Mia through her progress. I knew He was hearing my prayers and answering them.

DH and I show up for the *results* appointment and the girl said she doesn't see the appointment. I did get nervous, we were leaving the island in a few days and if we didn't meet with the neuro I would not be a happy camper. This was the big reason we went ahead with the MRI we were told we could get the results before we left. It got straightened out thanks to the ped. running upstairs to give me some paperwork and she went in and spoke to the neuro and told him we were there. He had another dr. working with him that came in and 'evaluated' Mia based on her actions and our answers. He was very nice and Mia liked him. Dr. Pedersen the neuro then comes in and his first question is: "Has Mia lost any skills?" She hasn't, but my first thought is negative of course and I think that the brain must be more damaged that the first MRI showed. He then said based on Mia's traumatic birth and having to be resuscitated and the history of her birth and her first month of life you would want to diagnose her with CP. But he said based on the MRI and what she is doing he doesn't think it's CP. He said her brain has 1 super small area of injury that is very deep in the brain and he would not have even noticed it if the radiologist didn't point it out. He said her brain is near perfect, it is the right size, it has matured the way it is supposed to, she didn't suffer any nerve damage and no area of the brain stopped growing or died. He said her MRI isn't consistent with her traumatic birth. He said based on her brain you wouldn't realize how traumatic of a birth and first month of life she had.

While she isn't out of the CP woods yet it is now thought that her traumatic birth may be overshadowing another problem causing her delays. I guess I really wasn't in denial about Mia having CP. The Neuro said she still may have CP that will be more obvious in the future (where she would have troubling reaching for things because her arm would bend and go into different directions rather than straight for the object) though he doesn't think that will really present itself. He said based on her current movements and abilities he doesn't see this happening. Then she busted out her new move, the bear crawl (walking on all fours) and this just sent him over the top. He was amazed at her strength and the difficulty of that kind of movement. He believes she will walk. This was by far the best appointment we have ever had with our Mia. The brain looking like it did isn't a mystery to me at all. It is my miracle that I prayed for! God is healing Mia! She is still significantly delayed in all areas but improving. She can't walk, she doesn't speak, she is determined though and works hard everyday!

What does all of this mean?Well, the neuro thought maybe she has a problem with her metabolism, kidney and or liver functions as well he wanted to check her lactic (sp?) acid levels and do genetic testing. The genetic testing results won't be in for a couple of weeks, but all of the other labs we had taken on Monday came back normal. Praise God! I actually don't think they think she has anything genetically wrong with her, but this is a mystery and someone needs to solve the puzzle so this is more ruling things out. I pray that genetically she is fine as well especially because I would like to have more kids (I wanted to try for #2 starting in October when DH returned home), but also because I want Mia to be able to have babies when she is older and not have to worry about things. I did ask the neuro what it would mean if any of the tests came back showing she has something they tested for. I was asking more in the aspect of therapy and the current path we are on, it would change or wouldn't it? He laughed and said "Well, then we would have our answer! And if they all come back negative then her traumatic birth was just one of those unexplainable things and she should catch up some time." He also said if it was the lactic acid causing the low muscle tone that she would take a vitamin for it.

Her dx is a medical mystery at this point. God has been good to her. Maybe she didn't come into this world the way I hoped or dreamed and maybe she won't ever catch up but she is still a miracle. There is power in Prayer. I do hope my blogging friends and CP board friends will still accept me. I have found such strength in them. I will be honest when I see some of the babies younger than Mia doing more than her I feel so happy for them but at the same time I am jealous. I know through Mia's determination, therapy and prayer Mill achieve great things!

Glad the MRI is over...

2008-03-25T22:07:00.003-10:00

Wow! What a day! So glad that I will be crawling into bed soon. My head is killing me. I suffer from chronic migraines and EVERYTHING triggers them. Sleep (too much & too little), food (certain kinds, going too long w/out) the weather (when the barometric pressure changes, like before it rains) and STRESS (believe it or not, ha ha)!

I wake up and get myself all ready for the MRI. I have to force DH out of bed because suddenly he cannot get out of bed when normally at that hour he would already be at work. I read my note and oh no! I have to wake Mia up NOW or else she won't even get something to drink before we leave. I run her down stairs and try and get her to drink Pedialyte and warm liquid jello. She sipped but not too much. I run upstairs and put on her clothes and out the door. We were supposed to be the the hospital admissions office by 8:30, we're early it's only 8:15! We get all checked in and then I ran to the pharmacy to pick up vitamins. We head up the the ped sedation clinic where the frustrations begin! We tell them why we are there and who we are. They say "Oh you're early, but that's ok, better to be early." I said, no we were told to be here at 8:30 for a 10AM MRI. He argues that the MRI is at 11. I ask politely if he is sure he says yes. I still don't believe him, but at this point I give up. I mean I can argue until my a$$ falls off but it's not going to get me anywhere. We head to the playroom/waiting room where the waiting begins. A day of sitting and waiting. At one point I thought to myself, lets just forget it and go home. Mia is so tired and hungry, but being the good little trooper that she is she just goes along with it. Finally at 11:45 they call us in for vitals, almost 2 hours past the scheduled MRI time. We head down to the MRI room where I am feeling very nervous. We met the anesthesiologist and I really liked him so I felt a lot better. They drugged my poor baby so much though. It started with a shot to the arm to 'relax' her, which she cried and cried. The girl became more alert and held her body with more control than ever! A few minutes later in kicked in and you could tell that she knew something weird was going on with her body. I laid her on the bed and we went into the waiting room.

Oh my goodness, no one could have prepared me for seeing Mia in that condition. When she had the MRI done at 9 days old she was barely sedated and was pretty much awake when we headed back to the NICU. Well, today was so different. She looked so precious just laying there, but she looked like she was in a coma. When they wheeled her through the waiting room I heard 'wow that baby is out' and I was thinking yes she is. I was told by some people that they don't put them under. Well, heck, if that isn't under then what the heck is it?! She didn't wake up for an hour! DH and I didn't say this to each other until after, but we were both scared and thought she wasn't going to wake up. The nurse kept saying she was fine and she would wake soon, we've been lied to like that before so of course we didn't believe her. When I was prego with her and was in the ER they couldn't detect the HB (I was about 2-3 mos along) and they said oh no worries, but next thing you know the head dr. is rushing in with the portable ultrasound machine.

It was a longer than long day. We finally left the hospital at 4, almost 8 hours later. Oh and the idiot that told me my appointment was at 11 apologized and said he made a mistake we were supposed to go at 10, uh, yea I told you! Thanks alot!

We just have to wait until Friday for the results. I am trying to not think about it. The hardest part is, I have the MRI here at home with me and I am so tempted to look, but why? I picked up a copy of all of Mia's images (2 MRI's, 2 chest X-rays and 1 CT scans). A part of me wants to look, but I am too tired and I don't know what I am looking at. I can compare this new one to the old one, but I think I am better off waiting until I meet with the neuro!

It's Just the FLU!

2008-03-24T15:04:00.001-10:00

Who knew dogs could have the flu? I certainly didn't. I was fearing the worst!! Luke isn't cleared to fly yet, but he is on antibiotics for the flu. Poor buddy has a fever and everything!!

Morning Blog...

2008-03-24T08:24:00.003-10:00

Yes, I know in some parts of the country it is no longer morning, but when you are in Hawaii it seems as though you are just starting your day when everyone else is bringing their day to an end. I have a lot to blog about, but haven't had the time. I am very nervous tomorrow Mia has her MRI, now I will probably be even more nervous come Friday because that is the day we get to see the 'results' and speak with the neurologist. When I was in church yesterday the Pastor asked if we wanted him to come to the hospital and be with us while Mia has the MRI, I just started to cry and I couldn't even talk. DH of course said no, which was ok, it was just tough. I cannot talk to people about Mia. Well, I take that back, I can tell people who don't care or show sympathy practically as much as they can stand to hear, but when it comes to truly genuine people I just break down. While I am nervous about the sedation I am most worried about the results, how will I handle it and of course sitting here trying to anticipate what the neuro is going to say. I would say about 99% they will give her the dx that we've expected for the past 19 months, but I really don't see it being any easier to swallow. It really breaks my heart that I even have to think about this.

On another sad note we have to take our dog, Luke to the vet today. This is supposed to be just a physical to confirm he is healthy to fly. I am very nervous though because he hasn't been well lately and I am scared about what the vet is going to find. Last Sunday we thought he was going to die, then he seemed to get back to normal, but yesterday wasn't good. He is a Jack Russell Terrier and is very hyper and gets excited when people come over, he jumps all over them and gives them a grand welcome. Yesterday our friends came over (and he stays with them and has known them for 3 years and loves them) he was excited for just a minute or two and then he was no where to be found. DH found him lying under the table shaking. This isn't normal for Luke. He has bad allergies thanks to Hawaii and has been on steroid meds for a year and a half which have caused him to gain tons of weight. I am scared that even if the vet says he's clear to fly that he won't be able to tolerate the flight. He is going to be 6 years old in a couple of weeks, so he is only in the middle of his life, he's too young to die.

A 'Sign'

2008-03-21T15:02:00.002-10:00

Oh my goodness I cannot believe I didn't post this yesterday!! Mia had ST for the 3rd time yesterday. I don't care for the ST too much because she doesn't seem very knowledgeable. She asked me if I had any questions and I did. However she was unable to answer my questions, she basically said they were excellent questions but to ask someone else. Ok, thanks! Anyway, she is teaching Mia some very basic signs since she doesn't speak. Yesterday for the first time ever Mia did the sign for 'I want' and she did it TWICE!!!! The first time I wasn't so sure she was really doing it, but the second time without a doubt she DID IT!! ST was very impressed! Too bad Mia couldn't have what she wanted-the ST's gold cross necklace, but you can't blame a girl for tryin!!

Go to Bed I Said!

2008-03-20T00:05:00.002-10:00

Oh I thought I wasn't going to have my bloggin time! I haven't told DH about my blog. He would not approve of me posting Mia's pictures I am sure. He is very protective of her. She isn't allowed to wear skirts or 2 piece bathing suits, not even when she was just a baby! Now, the skirt thing we do anyways since girls rule! He hasn't been home for a week yet and things have been so crazy with last minute appointments and preparing to live out of suitcases for 5 months is touch. Plus he other night we thought our dog was dying. It has been a long week already and today is just Wednesday! I will eventually show him the blog, well, maybe not show him, but tell him about it. Anyway he wouldn't go to bed and he was on his laptop right behind me while I was on the MAC. Finally to bed I said and there he lays anxiously awaiting for me to get into bed as well!

Our dog is a Jack Russell Terrier named Luke. He is going to be 6 years old next month. Since being in Hawaii he has been miserable. We thought he would love it because we have a small yard (which we didn't have a yard before, we had a balcony, but I taught him to pee off of it!) and he loves to sunbathe. Well, he has severe allergies out here. He has had them all along but a little over a year ago they got really bad and for the past year he has been on a steroid allergy pill. This has caused him to gain a lot of weight (my weight gain is all emotional overeating, I wish I had a pill to blame). He is 24 pounds! He should only be about 13-15, but certainly no more than 17 pounds. Anyway, Sunday night DH rubbed the dog and went upstairs to cut his hair and get ready for the work week. I was on the puter...go figure and Luke went to the couch to lay down. All of a sudden he comes running (very fast too) over to me and is whimpering. He jumped onto my lap and then quickly jumped off. My first thought was he got bit by a centipede. He then ran over to the couch and looked at me like, come join me. I went over there but again he couldn't get comfortable and he was all over the place. I got so scared I yelled for DH to come down stairs. He ran down and I told him something was wrong with the dog. At this point Luke wants to go out front and refuses to go into the backyard. DH puts his shoes on and I said "Do you think he wants to go out front because he doesn't want to die in front of me?" As the dog went outside he had yucky poo. DH walked him and then he had more yucky poo and then just collapsed to the ground and refused to get up. When DH picked him up he was not even fighting to get down. He came in the house and just didn't seem well. It didn't seem like it was just a belly ache. I didn't end up taking him to the vet and he seems ok now. He does need to get off the meds and he will be going to the vet Monday.

We are canceling the appointment with the devel. doctor that was scheduled for Friday. We thought it was pointless to meet with the idiot again since we just saw him 3-4 weeks ago. Nothing medically has changed with Mia and the MRI hasn't taken place so there is no point in seeing him again. I am glad DH wanted to cancel because I really didn't like him and I certainly don't want him to be the one to give Mia her CP dx. I can't stand him! How mean is that, I don't even know him and I can't stand him. I know that isn't nice, but he wasn't nice to me!

I have a ton of thoughts to get out, but am much too tired so instead I will go to bed and have them all rolling around in my head. Then I will wake up and feel like I was so 'busy' in my sleep. I wake up talking (in my head not out loud). I am off to bed I said!!

**I had this all ready for posting and some pop up came up and shut off my Safari and I was too tired to deal with it. Good this blogger saves the drafts!!**

MRI Scratched?

2008-03-18T22:40:00.004-10:00

I have been nervous but anxiously awaiting the MRI for the past couple of weeks. It needs to be done and we've already put it off for 10 months. I recently reviewed some of the information from Mia's first MRI, which I realize makes no sense to me. I haven't tried to look up any of the information to see what it means, but knowing how I am I probably will eventually pick it apart and try and pretend I am a medical expert. Mia started to get a runny nose yesterday and I am now worried that the MRI will be cancelled. She had the sedation physical yesterday and Dr. Lantang said they have to be symptom free for a week prior. As much as I was fighting the MRI (in my head and by canceling the MRI in May) I know that we need to do it. I think we now need to have an official diagnosis post delivery (not just her HIE at birth). If we are not able to do the MRI on Tuesday we will have to put it off for at least 6 more months. DH is going to be in VA for school while Mia and I will be in SO. CAL. I certainly could not do it without him. I am already a nervous wreck. If it does get cancelled due to illness I know that it is God's plan. After I got the appointment scheduled I had this overwhelming feeling that doing to MRI wasn't right. I wasn't sure if it was just a case of 'cold feet' or if it was me knowing that it wasn't the right time. I've said many prayers to God asking him to send me a clearer more obvious sign if I was missing something.

I cannot figure out why Mia hasn't been given a diagnosis especially given her previous MRI, birth history and global delays. I think I need to have a diagnosis now so I can begin the journey of actually accepting it. I think I could be ok with it, but until I actually hear the words "She has Hypotonic Cerebral Palsy" I can't say how I will handle it. I know that when Dr. Scurry said "I have a very real concern that she has Hypotonic Cerebral Palsy" I really didn't believe him, in part because I don't want to believe him and also because he is an idiot. Which reminds me that I have to meet with that knuckle head again this week. UGH! We met with him a couple of weeks ago and that idiot didn't even document the meeting (since I picked up her records I know). I have found 2 appointments that weren't documented both of them were devel ped appts. Interesting.

Another interesting but annoying thing is I reviewed all of Mia's medical records and besides the two reports that

were missing there is one from her 1 year checkup that is filled with lies. I only know for sure that 2 reports are missing and that is only because I know how many times she saw devel. ped. there may be others missing that I don't remember. But the one that is filled with lies is from a doctor that is of experience and was taking over for Mia's ped while she was on maternity leave. It says "The patient is a 1 year old female. Source of information was mother*Past medical history reviewed* Waves bye-bye, Imitates simple daily tasks, rolls a ball back to the examiner, drinks from a cup, bangs objects together, has neat pincer grasp, scribbles spontaneously, says mama or dada specifically, walks holding onto furniture, stands well alone, walked unassisted." Maybe I shouldn't be bothered by it, but 1 I never told the doctor that Mia could do those things and 2 she doesn't even do some of those things now, 7 months later. She just began to furniture walk, she certainly cannot walk unassisted let alone stand. She just started to wave bye bye, she doesn't say mama or dada specifically still. Maybe I am making too big of a deal about it, but I am not very happy with this. I don't even know who I could talk to, plus they would probably just laugh and say 'get over it' (common military solution).

** This picture is actually from October 06 so Mia was roughly 2 months old. I bought this Anne Geddes outfit as a Halloween costume, but since it's a bunny I thought it was an appropriate Spring/Easter Picture~

"Lifeless" She's come so far...

2008-03-17T22:31:00.004-10:00

In preparation for our move I picked up all of my medical records from my pregnancy as well as all of Mia's medical records from birth to present. Mia spent her first month of life in the NICU. I was discharged two days after her birth. It was so hard to leave my baby! It just didn't seem fair. My mom and sister flew out to Hawaii to be with me. My mom was already scheduled to arrive, but when the birth went the way it did my sister insisted on flying in as well. I am so thankful that she came to be with me.

I went into labor on Saturday night (at least I was pretty sure it was labor), but I didn't say anything to DH. That night I was up every hour on the hour going to the bathroom. The last hour was about 5Am and I remember thinking I was too tired to get up and I had another hour or two until I had to be up to get ready for church. As I rolled over there was a sharp horrible pain that forced me up to the bathroom for a less than pleasant number two. I think I was in there for an hour and I decided to take a bath. For two reasons, ofcourse if this was the day I wanted to shave and be clean and this was also my water labor attempt. After my bath I showered to wash my hair and then woke up DH with the news. I was hurting so fricken bad though. I then called my mom to tell her the news. Several minutes later I called my sister. Every attempt to call my dad failed as the pain was just too intense to talk. We decided that I needed to be rushed to the hospital.

I was reading the neuro report and as sad as it made me to read it, it also opened my eyes as to how far my little Mia has come. His report: "...At the time of delivery, it appears that she was 'lifeless' and Apgars assigned were 1,6,6,6,6. It sounds as if she was resuscitated quite urgently and appropriately..." They kept checking her APGARS because they were hoping she would achieve higher than a 6. Her 1 minute APGAR of 1 was for her heart rate and at 5 minutes she got 2 for her HR and 1's for everything else.

I feel very frustrated at times wondering from a medical standpoint why this happened, tough I know I will never know. I also know that if we didn't get to the hospital when we did I could very well be living without Mia. When I feel sad that she can't walk or talk or do other things that 19 month old toddlers do I have to remember where she came from. I am so thankful for Mia and I know God has a plan. She continues to show progress each and everyday. She is going to be the 'one that surprises the doctors' I guarantee it!

He's Home!

2008-03-15T21:59:00.003-10:00

My hubby has been gone for the past 2 weeks. I was worried when he first left, this would be the first (of many) time that I was going to be alone with Mia day and night. I live in Hawaii right now and NONE of my family lives here. I was scared. She's such a good girl though, we managed just fine. To best quite honest, it was actually easier having him gone!! I made meals that were quick and easy to cook and had little clean up. Mia and I had a wonderful routine. Typically I am relieved at the end of the day when DH comes home because he takes our LO and I make dinner and have a few minutes to do other household things. Her and I would take a nap very late in the day (she would sleep 2 hours, I would sleep 1) and then she would wake up and she would have Pediasure and we would watch some cartoons. Then she would play while I made our dinner. More playing while I cleaned the kitchen. Her and I would play and then it was bath and bedtime. Now, when he was gone I was guilty of staying up waaay to late! I am talking about 1-2 am or even later! I would be going on 4-5 hours of sleep...that's why I needed that PM nap.

Of course I am glad that he is home. It is just another adjustment to get back in the routine of having him home. Plus we have just 1 car right now which is a huge pain. We already shipped his car to San Diego and we have a good 2 weeks of this sharing thing. I am not good at sharing! It's hard with Mia's therapy and she has several doctors appointments coming up before we leave. I am so so so scared of the MRI. She has had one already, but I just have the butterflies. I wake up in the morning and feel so nervous as the upcoming MRI is my first thought of the day. Next week Mia has therapy 3 times (2 PT and 1 ST), she has a physical to make sure she is good to go for the MRI and then we meet with the horrible devel. ped on Friday. Oh how I don't want to see that guy at all! UGH! KMN! Where I was going with this is how are we going to manage with 1 car? I don't know how people do it. I was without a car for one day before he left and I was going stir crazy, the thought of having to be home all day was awful! We thought about trying to be a 1 car family, i can tell you that thought WILL NEVER enter into my mind again. No way!

Mia is so thrilled to have daddy home. Oh boy does she love her daddy! She just melts his heart. She loves me and is very close, but she is a daddy's girl. She acts so different when he is around. She wants his non stop attention and she wants him to play (she likes rough housing) for hours! He puts her down and she throws a temper tantrum. If I put her down and he is not around she will get upset but only for a moment and then she will play. I feel bad for him when all she wants to do is play, but secretly he LOVES it! I know she makes him feel so special!

What Will People Think...

2008-03-15T00:03:00.002-10:00

I am generally the kind of person that doesn't really care what people think. When it comes to Mia I worry so much. I worry about people talking about her abilities (or lack of) behind my back, I worry that people will make fun of her. I worry about having the conversation with people about why my child is 19 months old and can't walk or even stand without assistance. I worry that people will think I did something to cause this. I know that anyone who would talk about her, make fun or her or think I did something to cause her brain injury aren't people that matter and they certainly aren't my friends or family.

I remember when the doctor came in to talk to me a few hours after Mia's birth he said "this isn't your fault' and at the time I was so out of it I was thinking, yeah I never thought it was. I hadn't even seen my baby yet so I really didn't know what he was talking about. I had Mia on Sunday morning and was released from the hospital Tuesday morning. I got very sick, I didn't know I was sick, I had a super high fever (which I didn't realize) and I was going delirious. I remember being freezing cold and trying so hard to get warm. DH woke up because I was shaking so bad and asked if I was ok. I would repeat myself over and over again to the point I was scaring him. I just kept saying 'I'm ok, I'm ok, I'm ok.' The next morning he insisted I go to see the doctor, which I really didn't want to do because I wanted to go and see my baby. Anyway, I went to the doctor. My incision from my c-section was fine, no breast infection, no other womanly infections everything appeared to be normal. I asked the doctor if he left something inside me, a surgical tool, gauze, etc. I was joking...sorta. He didn't laugh, he was nice, but had zero sense of humor. Anyway, this is all off topic, I was sitting in the dr. office talking to DH and crying about having to waste time in their when we could be seeing our baby. I started to worry at that point. I cried to him how everyone is going to think I did something to my baby. To this day that kills me to think that someone would think that. No one has ever said to me that they thought it was my fault, it is just my fear of thinking someone would think that.

It is so hard because the doctors were never able to figure out what happened. I wonder all of the time why medically speaking this happened. I know that I will never get that answer, but it bothers me.

Good Things

2008-03-13T23:01:00.003-10:00

I find that often when I post I might come off as the 'glass is half empty' kind of person. I'd like to think otherwise. So, I wanted to reflect on the good things.

I am so lucky to have my little Mia. She is the most adorable (yes of course I am partial), hard working and determined little girl. All that packed into her little 18 pound body. She has taught me more in the last 19 months than I ever imagined I could learn. I love her so much. She amazes me every single day! When my mom's best friend (whom I call Auntie Maryann) got the birth announcement she said Mia had "an all knowing look" to her. Well, little did she know how right she was on that. We do now refer to Mia as the all knowing baby, well now it's the all knowing one, since she isn't a baby anymore (she's 19 months today)!!

Mia's stubborn personality and determination along with a lot of prayers has gotten her to where she is at today. SHE WAVED TO ME THIS MORNING! I went into her room and as always I said in my energetic voice 'HI MIA' and I walked to her crib. She always gets excited and wild and she looked at me and WAVED! She doesn't wave, sometimes with a lot of prodding and holding of her arm she will wave, but that isn't very often. I was so happy. She made my day! Yesterday I swore she spoke to me and said OUTFIT. Now, I can't be sure that is what she said, but the WAVE was really a WAVE!

Mia came home from the NICU when she was 1 month old. She came home with the NG tube. The doctors originally wanted to give her a G-tube, but nurse Vicki got her to take some feeds from the bottle, so they decided to send her home with the NG tube to make sure she was taking in all of the milk they wanted her to get at each feeding. When we got home the feeding tube was an issue of stress. We were always worried she would pull it out and we hated having to put it back in. DH and I also thought that she would never really learn how to know how much to eat if we would do a bottle feed and then put the rest into her NG tube, we thought that was too confusing for her. We decided to take the tube out and I would just offer the bottle even more than before. She was getting all breast milk as I was pumping like a mad woman! A short time after taking the feeding tube out my normally content, calm, quiet baby was inconsolable. She was flipping out. I was panicking because she's never been like this before. I walked her around, burped her, tried to give her the bottle, nothing was working. I just got this feeling that she wanted the 'boob', I know it sounds crazy. I had tried 2 times in the NICU with no success. I figured my hopes of breastfeeding were gone. Ok, so I have this screaming red in the face baby and I whip the boob out and guess what?! That is what she wanted! Holy mama, what the heck?! I yelled to DH OMG she latched ON! He comes running over trying to get pillows and make it all comfortable for us. So the first month of bf was very tough, she took at least an hour to latch on, my neck was killing me, but it was all worth it. I couldn't believe it, everything you read says if they take a bottle first they won't BF, not my daughter! I nursed her until right before her first birthday, at that point the all knowing one weaned me! I wasn't ready to quit but she was!

I bought a book called Teaching Motor Skills to Children with Cerebral Palsy and Similar Movement Disorders (highly recommended). This book has been very informative. Chapter 9 is Guarding Against Falls. In this chapter it talks about the parachute response and how children who fail to develop this response do not progress into independent walking. It says that this response can be taught and once it is learned it doesn't go away. It has several exercises to do to achieve this response. It starts out with easier beginning exercises and then progresses into more complex exercises. In late December I was at my parents house (stayed for 2 months during the holidays) and Mia would be on the floor playing and she would get up on her knees and put her arms up in the air and reach up high. Then she would let herself go and she would fall forward and catch herself in the crawling position. Well, we thought it was adorable of course and since she is hypotonic we thought it would be good strengthening. We never knew why she was doing it. I get to chapter 9 in this book at this is the more complex exercise in learning the parachute reflex, the exercise is called touchdown from tall knee. The exercise would call for the parent (or PT) to guide the child up into tall knees and drop down into the quad position. OMG! My kid is amazing! She taught herself the reflex!

Of course there are more reasons we refer to her as the all knowing one, but those are the two big ones! I know that things with Mia could have been so different. I know that by the grace of God she was able to be resuscitated. I know that God has continued to answer prayers for her and He will continue to answer our prayers! She is globally delayed but she is always improving!!

Basket Case

2008-03-12T22:19:00.002-10:00

Boy lately, I just can't get it together. I find myself crying more and more. I know everyone has 'bad' days but day after day. Come on now. Get a hold of yourself, Tara! For so long after Mia's birth everyone would say 'she's gonna be fine'. I know it was meant to be encouraging while others were probably saying it to convince themselves. They would say 'she's going at her pace' or in x # of years you wouldn't even know she had a rough start. Finally I couldn't take it anymore. I said " I don't care if you think she's going to be fine, I don't care if you think in x number of years no one would know that she had a rough start. I want what every mother wants, my child to develop and achieve things naturally and like every baby does.' I just felt like my feelings were being downplayed or like my family thought I was being dramatic about Mia's situation. Which, my mom and my sister know how gloomy things were looking as they arrived to the hospital just over 24 hours after Mia's birth. I've come to realize that this is going to be a pain that I feel for the rest of my life. She can achieve milestone after milestone but this isn't going to go away. She hasn't been diagnosed yet and I have been fighting the unconfirmed diagnosis. I just can't stand the thought of Mia having CP. I had a talk with her secondary PT and she was very nice, but she basically said her confirmed dx of CP is neither her nor there. She said " Mia is still going to do what Mia is going to do. She is still Mia.' She is so right, they can label her with whatever they want to but she WILL ACHIEVE many things. She may not do it as well or as fast as others but she will do it. She is truly a hard worker and even at such a young age she is very determined.
There is a mom on the message board that I belong to. She has an older child with CP so she's been living with this for a number of years. She doesn't know me, I don't know that we've ever even posted to each others threads, but I admire her. She has said so many inspirational things and has helped me through rough times without even knowing it. I hope someday when a mom just finds out her child has CP that I can be their for her and offer support and experience. I don't understand why if CP is more common that Autism why there is so little out there. If I look things up for services for Mia the main topic discussed is Autism. Not that I don't think those parents need the support, I just find it odd that CP isn't mentioned in the same way.
I read other blogs and postings from other mothers in my shoes and they seem so 'put together' in their thoughts and writings, I feel like I ramble and make little to no sense, I am a basket case!

Shoes! Shoes! Shoes!

2008-03-11T23:55:00.005-10:00

The last several days I have been overly emotional. I just can't get a grip. It doesn't help trying to find shoes that fit over Mia's SMO's. It has been a challenge for me. It's hard too because I love to buy her shoes and now I realize that a lot of the shoes that I like probably won't work with her SMO's. We had success though! I have a pair of New Balance that fit her and look nice. She has a pair of Nike, I am not sure that they fit good. I have to double check. I know she is getting sick of the off and on with the shoes. She has a pair of Stride Rite that look nice too, they cover the entire brace, but they are a little long. She curls her toes up when I put shoes on her and I don't know why. Today I went to Nordstrom because I noticed on their website that they carried a wide variety of Stride Rite and I was hoping to find a cute pair of white sandals or something of that sort so she can wear them with dresses etc. Well, as usual just because we have regular mainland stores doesn't mean we have the supply. Hawaii is notorious for running low or out of everything I need. It sucks. So, they have 1 pair of sandals and they are light pink. I think, ok I want white but this will work. Wrong, the darn velcro wouldn't close. I guess the longer I deal with these braces the more I will know what kind of shoes will and will not work with them. So, I decide to try the Pediped shoes (I already tried once last night) well, I realized they do work!! I have to put the brace on and velcro the shoe before I velcro the brace!! I feel very happy that I found a pair of shoes for her. The other shoes that I have for her are so bulky and heavy, the Pediped is a soft soled shoe and very light. She loves the braces. She was so proud of herself in Nordy's. The sales girl asked "why does she have to wear braces?" So, I told her that she has low pronation and these help support her ankles from rolling in. She said, oh my little brothers friend wears them, he has Cerebral Palsy. KMN. I am really struggling with this whole CP thing and I dread hearing that DX and I just know it is coming. I will blog about a good conversation I had with Mia's secondary PT.

I am glad Mia loves the braces. She really thinks she's neat with them. I can't help but think to the future though, what will she think when she realizes that not all kids wear them? What do I do when she realizes she's 'different'? I shouldn't worry about the future but I do. I love her so much. I can't even stand to think of her feeling bad or someone making fun of her!

Sisters...

2008-03-10T22:13:00.003-10:00

So, I stole this from Suze's page, but I just had to post it. I am already emotional today, but this really made me even more emotional, but it makes me feel very understood. If that makes any sense!
Sisters....

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, and "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, nephrology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't
understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "Welcome To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind
children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing
Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

-Author Unknown

And Then It Dawned on Me!

2008-03-10T20:50:00.004-10:00

What a day! It started off good, which should have been my first clue. I've been back home in Hawaii for a month now. Since I have been back I have been in a terrible rut. I don't want to do things with people. I've been to church once, I've hung out with my friend twice, but other than that I would rather not see people I know. I don't mind going out in public as long is isn't seeing or doing anything with people I know. Part of the problem is I've gained weight over the holidays and I didn't have room to gain. I am not doing anything about this but complaining and gaining more weight. I had lost 20 pounds, that is back plus some! The other problem is I am getting ready to move and it is hard to say bye to people that you've built relationships and bonds with. It is going to be especially hard leaving our church. The pastor was there so many times praying over Mia in the NICU. It was so incredible too, he would come in and the nurses would flock to our side and everyone would bow their heads and place their hands on Mia. Mia was baptized at the hospital because we were just not sure if she would make it. I am also finding it increasingly hard to speak about Mia. I've always gotten choked up when I would talk about the doctors appointments and stuff, but lately I've been really emotional.

So, as I said today started out good. I went to Honolulu to the brand new Nordstrom and Janie and Jack stores, they just opened on Friday. I met my friend Jane there. We had a nice time, talking, shopping and just hanging out. The trip was a success, I got a new outfit for Mia (like she needs any clothes), I found a pair of slipper boots for Mia (I was thinking they would fit with her SMO's), I got myself a nice Peugeot salt mill and got a great deal on some gymmies for Mia. I was pleased. I had a disgusting lunch, but that didn't even get me down, I figured I really didn't need food anyway.

I got a call from the PT that Mia's SMO's were in and I could come in today to get them. I was glad they came in because last night Mia walked pushing a push toy!!! When we tried to get her to do it before she would stiffen up and not move. She will finger walk anywhere and she likes to cruise along the furniture, but those push toys scared her. I noticed how much her ankles rolled so I was hoping she would be getting her SMO's soon. She loves them. I will post pictures, but I didn't take any yet. I like to plan things and I like to shop. I shop a lot, probably too much, but I am pretty much an expert shopper, I buy super nice things for practically nothing, so I am actually saving DH money!! Since finding out Mia was getting SMO's I've searched for shoes. I read the boards and people were mentioning Stride Rite and New Balance. Well, wouldn't you know it Ross started getting in new Stride Rites everyday! (Yeah I go every day when I am looking for something, you have to. That's how you get the deals). I started to buy several pairs thinking that 1 pair is bound to work and I would return the rest. I bought some NB and Nike too. I think I had about 10 pairs in various sizes. I get home from Tripler and go up to Mia's room. We're checking out the shoes and not one single f'ing pair fit. I start to flip out, HOW CAN THIS BE! KMN!!! I tried on the new slipper boots, one fit, one didn't and her SMO's are the same size. This isn't right I tell myself. I got so frustrated. I was able to get the slipper boots on her!! BTW I got them at Disney for 4.99. So, great she has a pair of slippers to wear with her SMO's. I was told by her PT that one of the mom's got Pedipeds to work with the SMO's so I thought we would eat dinner and go to the store and check them out. BTW I also tried on Robeez and those fools didn't work either.

We head over and check out the Pedipeds, yeah right, unless you cut them they will never fit. Mia has a pretty small foot and it is very narrow. I decided to go to Payless since I also remember people mentioning Payless, well, the one pair I thought would work didn't and they looked ridiculous! I am getting so upset, I want to start crying. I decide to walk over to Ross and hope they have some new shoes, nope. I decide to check some kitchen things out but as I am walking over there I just started to cry. I am so frustrated, what am I going to do! I leave Ross and go next door to Puma, they don't carry shoes in Mia's size, the smallest is a toddler 6. Great. What a waste of time. I head home!

AND THEN IT DAWNED ON ME!!!!!!!!!! Duh, people were mentioning taking out the insoles! Could this really be?! I go home, Mia needs to take a bath and go to bed. She is exhausted since both of her naps were not really naps. She's a trooper though. She's learned to appreciate shopping and trying things on. She pops her foot up and it WORKS!! Not all of them, but a couple of them!!! WOOOOOOO! HOOOOOOO! So, I give her a bath and put her to bed I said! I am going to Nordstrom again tomorrow though as I would like to try and find another pair for her. 3 pairs I have work for her, but they are pretty big so I would like to find something a little smaller!!

KMN

2008-03-09T01:41:00.002-10:00

By the way if you see KMN in my postings it stands for Kill Me Now!

Of course I don't really want to die/be killed it's just an expression used similar to Gag me with a spoon!!

Laugh Mia, Laugh!

2008-03-09T01:00:00.003-10:00

Just a small post. I have so many thoughts that need to get out instead of putting one huge post I am making several little ones. I should go to bed, but what fun would that be. I will lay there with all these thoughts rolling through my head.

I don't really need to discipline Mia that much, she is a fairly good girl and she is just now becoming more mobile so their hasn't been an issue. Well, there is starting to be an issue. I have baby gates since we live in a 2 story. I have them placed to keep her in the living room and dining room. This helps keep her from the stairs and the kitchen (she likes to get the dogs water). She whines every time I put the gate up in the kitchen. The whining continues even when I try and distract her with something else. Well, occasionally I will allow her in the kitchen so I can see her better, but then she gets into the cupboards with the fly swatter and cleaning supplies. She also began standing up in her high chair. I guess since she just learned how to do this she wants to try it every time. She also likes to come over to the computer and play with the keyboard. When she does these things I tell her "NO". The problem is when I tell her NO she laughs at me! Every single time I say "Mia NO!" She just laughs and laughs. I say it in a stern voice with no smile, still she laughs! UGH! What am I going to do?

Dilemma

2008-03-09T00:49:00.003-10:00

Our neighbor invited us over for a first birthday party for their son. I am very uncomfortable about going. These people live right next door and have for the past 5-6 months, but they don't know about Mia's delays. I mean I am sure they suspect something because they know she is older than their son, they know that she doesn't walk, they know that I have her in the baby Bjorn every time I water the front yard. I just have a hard time going around people that don't know about Mia. I have stepped outside of my comfort zone and taken her to Gymboree where eventually I had to explain things. I have a hard time though because it makes me want to cry when I talk about it. I don't want to start balling to someone who I just met. If I try hard to minimally explain Mia without crying I get very wordy and start making little to no sense or I repeat myself.

A huge part of me wants to just get a present and skip the party since I am moving in 3 weeks anyway. I will probably never see these people again anyway. Then I think to myself, well, you can't avoid new people forever! I tried to tell my mom my dilemma, but she just doesn't get it. She said "well can't you just tell them that she had a traumatic birth and you're working on catching her up?" I said sure I can, but do I really want to? I don't. She had 4 kids, all of us developed 'normally' she doesn't know what this is like.

I am going to have to ponder on this a little more. I haven't decided 100% either way.

Gymboree

2008-03-08T20:56:00.002-10:00

Mia has Gymboree Play class on Friday's. I signed her up about 6 months ago. She doesn't get any interaction with little kids so I thought it would be good for her. As stated earlier this is very difficult for me. I am very uncomfortable there. I feel so 'different' than the other moms. For the most part Mia enjoys it. Well, we were gone for 2 months (vacation) so she returned to the class a few weeks ago. She was scared and wasn't too sure about it anymore. We continued to go. Last Friday was awful. No one talked to me. I tried to engage in conversation with one of the mothers that has been at the class every time that I have. She was very standoffish. I was already uncomfortable being there (I gained weight so I am feeling like a pig) and then no one talks to me. I have a kid that is 3-9 months older than all the other kids, yet she is the only one not walking. (Well, 1 doesn't walk, but I suspect some sort of delay with him based on his movements). So, yesterday I was really dreading going. Nordstrom finally opened out in Hawaii and yesterday was the grand opening. I wanted to skip Gymboree and go to the mall. I didn't want to take Mia out of class because of my insecurities so we went. Well, yesterday for the first time she showed that she had a BLAST! She laughed and cruised around and just enjoyed herself. She even touched a kid on the face, arm and pulled on the little girls shirt. This is big for Mia, she has watched other kids but this was the first time she tried to engage in activity with one!! She was pooped afterwards. She ate lunch and took a nap before her PT. I was so happy that she had a good day at Gymboree. Oh yea and the mom that was standoffish last week was also very friendly. Maybe she was in a bad mood last week and I took it personal?

Could She Be Right?

2008-03-07T22:49:00.005-10:00

I know there is such a thing as denial. I think I am pretty in touch with reality most of the time, but I also know that I believe what I want to believe. When it comes to Mia and having CP I am so confused. A couple of weeks ago we met with yet another developmental ped. I thought he was an idiot, but that is not the point. He talked a lot and talked circles. He basically told us stuff that we had already been told, hypotonia, globally delayed, possible CP. But then he went on to prove his idiocy by saying he doesn't understand why the other doctors are beating around the bush and not saying that Mia has CP. He said they are calling it Hypoxic Ischemic Encephalopathy, Hypotonia or low muscle tone instead of calling it what it really is Cerebral Palsy.

Let me give you some background on why I call him an idiot. We go to an army hospital which is probably our first problem, the second problem is we live in Hawaii which limits our resources. Mia had an excellent devel. ped. who we loved, he was so great. He was very positive, not unrealistic and he was understanding. He was in the military so he was deployed to Iraq. The next devel. ped. was a civilian doctor filling it at the Army hospital. He was a waste of time. He didn't even do an evaluation on Mia even though he had never seen her before. He just asked us some questions and that was that. I felt very frustrated after that appointment. We were supposed to meet with him again in November 07, but his contract didn't get renewed and the hospital didn't have a devel. ped. I was irate. I demanded to be seen at a civilian hospital with a new devel. ped. well, jokes on me. There is NO DEVELOPMENTAL PEDIATRICIAN on the entire island. So, meanwhile the army is looking for a civilian doctor to come and fill in for them. Which, brings me to the 'idiot'. So, he's an idiot because of some of the things he said, he's an idiot because he didn't even review Mia's files to gain an understanding of her and her progress. Instead he decided to read up on her for the first 25 minutes of our appointment leaving us waiting in the waiting room. This appointment had been scheduled for a month or more before we met with him. He had ample time to review files and gain a better understanding of his patient. So, now that I have ranted about this guy who doesn't stand a chance against me. I am so harsh! Yikes, back off girl!

My husband asked the doctor why the other doctors would not be calling it CP and referring to it as other things. He started to answer and then realized there was nothing he could say. How can he speculate as to what another doctor was thinking? So, I then asked him what his opinion is (though I thought he was an idiot from the beginning I thought I would entertain myself by asking). He said " I have a very real concern that she has hypotonia cerebral palsy." Ouch! I didn't want to hear that. I came home and read and read and read some more. I just couldn't see where Mia fit into any of the CP categories. Yes, she suffered a brain injury due to going without oxygen. Yes, she is hypotonic. Yes, she is globally delayed. I know all of these things, but she doesn't have any of the other characteristics common with CP. So, I wonder...could I be in denial? Do I not see what Dr. Idiot Sees? Am I really that out of touch with reality? I know that CP has different degrees, different variations, but I also know it is possible to have congenital hypotonia and not have CP. I know that it is possible to have a brain injury and not have CP. I know that you can have CP and the brain may not reveal an injury.

Since Mia's first MRI I have researched CP. I did a lot in the beginning and then I realized while she was still in the NICU I needed to focus on being with her and not worrying about CP. Several times over the last 18 months I have researched CP and the symptoms of CP. Sometimes I would think it was possible that she had it, other times I was convinced she didn't. About 4-6 months ago I asked her PT if she thought Mia had CP, she said 'No'. I was relieved and agreed with her. Well, today I was talking to her, this is the first time that her and I have talked since Mia met with Dr. Idiot. I told her about the appointment. When I told her about his concerns for Mia and that she has CP she looked at me in complete confusion and disbelief. She said she truly doesn't believe Mia has CP. She said that Mia's global delays are a result of her having Hypotonia, but she is showing great progress. I told her that I think the doctor wanted us to do the MRI because he wants to say "see I told you she has CP'. She highly recommends a second option if he does DX her with CP. So, is a PT qualified enough to know whether or not Mia has CP? Could she be right? I will totally seek a second opinion if he does dx her with CP.

MRI

2008-03-07T21:58:00.004-10:00

Mia's MRI is scheduled for Tuesday, March 25th. Now that I have the actual date set I have 'cold feet'. We were supposed to have the MRI in May and I got cold feet and cancelled it. Mia had an MRI done when she was 9 days old. I remember when the neurologist sat us down and showed us the images my first thought, was 'oh it's not that bad' but I do recall starting to cry and then I blocked out almost everything else he said. I do remember him going over the areas of the brain that had 'injury' and I also remember him mention bleeding on the brain. I do remember the neuro saying 'Likely she will have CP' He also said 'Her motor skills will be affected.' I also remember him saying 'Cognitively she'll be fine.' I don't remember anything else he said. I was just crying and crying and trying to process it. Then he said 'But of course she could be the one that surprises us.' I listened at that point and in my mind I said 'uh huh, she will be the one that surprises you I promise!' I walked away back towards Mia's crib in the NICU and I was crying and crying. The psychologist came running up to me Mrs. Neville, Mrs. Neville, I was thinking shut the (naughty word) up. She said she would like to talk to me. I just looked at her, like lady this isn't the time. I never did talk to her. I do wish I had someone to talk to, someone to cry with, someone that understands though. I don't want just some random person that hasn't walked this walk. Of course I have my husband, but we don't process and deal with things the same. I want another mother who knows the pain that I am in.

So, I am off my original topic, but this is my blog so I suppose I make the rules! ha ha. I am being funny. See, since you don't know me you don't know that I am very sarcastic. Which, I just read in my parents magazine that I am teaching my daughter sarcasm and that it isn't a good thing to teach her, it can lead to passive aggressive behavior. LMAO! I am the kind of sarcastic that people often don't realize I am being sarcastic they think I am serious and get offended. My husband is the worst. He knows me, but he says I use my sarcasm as a back up plan when I say something completely rude to him, once I realize his feelings are hurt then I change it up with, what I was just joking! He's right, I do that sometimes!! Shh! Don't tell him!

Ok, back to the MRI and cold feet. So, after Mia's first MRI they told us that about 6 months down the road they wanted to repeat the MRI. They wanted to see if the 'injury' stayed the same or got worse. I prayed and prayed and still pray that God will perform a miracle and restore Mia's brain and the MRI will show no damage. I wanted to do the MRI for that reason, to see if I got my miracle. When it came down to it I was just too scared to put her under so we cancelled the appointment. A couple of weeks ago we were encouraged to proceed with the MRI so that we can get a long term prognosis. We decided that we should have the MRI done. I prayed a lot about it and having the MRI seemed to be the right thing to do. I suppose if I am missing the signs saying otherwise then God will have to send me a bolder sign, like the MRI gets cancelled or Mia gets sick.

I have prayed so much for Mia. Mia has had many people praying for her. I know the prayers have worked and she has come this far because of all of the prayers. Every night when I say my prayers I say "dear God, please help Mia to not have any long term affects from her injury at birth." Up until 3 days ago I guess I didn't really realize what I was saying. I knew the neuro said she could have motor skill issues, but I guess I just thought that was something that was just going to be a slow process but work itself out. I also knew that she was at risk for CP, but I never thought of it as being a lifelong thing. I mean I know that CP doesn't go away, but what I mean is when I prayed that prayer I was never thinking don't let her have CP. It is just so hard to process, understand and deal with this all at once. I have more to write, but this blog is getting to long! KMN

Here is a picture of my little Mia on August 22, 2006 (the day of the first MRI).

To Blog or Not to Blog?

2008-03-06T23:45:00.000-10:00

Ok, so i see many people do this bloggin thing. I have actually created 3 blog postings on my (shh!! don't laugh) Myspace Page. It really did feel great to 'unload' everything. Something about getting all of your thoughts, feelings and frustrations out is just so cleansing. Now if my wonderful hubby was aware of my blogging I am sure there would be some laughter and snickers from him. We deal with things so different. Is it because Men are from Mars? Who knows? Anyway, I thought I would give this bloggin thing a try. As far as this page set up and the terminology goes I am such a rookie I have no idea what I am doing.

So, ' Strong Can be deceiving' kind of has a double meaning for me. Friends say to me 'Wow, I really admire your strength' or 'Good thing you are strong' or in various ways they compliment my strength. Well, the fact of the matter is I AM NOT STRONG! I don't want to be STRONG! I have no choice but to try and be STRONG! I am so weak and so sensitive, but I can't walk around all day crying. So, I do what I have always done, put on the smile and go about my day. Little do they know how many times I cry myself to sleep or how many days I just wake up crying. Little do they know how much my heart aches and breaks.

Mia is in a Gymboree Play class which was very hard for me to sign her up for, she started when she was 13 months old and was in a class with 6-10 month old kids up until this past month and now she is almost 19 months and is in a class with 10-16 month old kids. She is older than all the kids, yet she is the only one that can't walk and she just started to crawl. Most of the moms are nice, but I really feel uncomfortable and like an outsider. Anyway, as usual I got off topic, so when we first started the class the teacher would ask a question and would go around the circle and ask for everyone to reply. One day the question was " What is the one thing about parenthood that you never expected to feel?" Most of the moms said, frustration, love and tiredness. When it came to me my answer was " I never expected to feel so much love and have so much heartache.' It was at that point when it became so clear to me how little people understand the emotional roller coaster it is having a special needs child. While these moms no doubt love their kids, they have frustrations because their kids are getting into everything and I am siting on the other end wishing my LO would be mobile and get into everything!