Wednesday, May 28, 2008

Lazy Bones...

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.

Tuesday, May 27, 2008


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?

Thursday, May 22, 2008

Say That...

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!


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 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!!

Tuesday, May 20, 2008

I Love Mia's New PT!

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...

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 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!

Friday, May 16, 2008


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!

Thursday, May 15, 2008


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.

Tuesday, May 13, 2008


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!

Monday, May 12, 2008

Just Call Me a JINX!

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!!

Sunday, May 11, 2008

Happy Mother's Day!

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..

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.

Friday, May 9, 2008

Drum Roll Please...

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!

Thursday, May 8, 2008

Prayers Please

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.

Sunday, May 4, 2008

Being Over Sensative

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.

Friday, May 2, 2008

I'm Happy/I'm Sad

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
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!!