Mia's Walkin Device

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...

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...

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...

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

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

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!

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*

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

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!