I'm Back!

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

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

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!

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

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

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...

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.