One step forward, ten steps back

Just when you think you have the swing of things down, all the appointments, home therapy, helmet therapy, patching the eye, how to tell the difference in an illness and a shunt malfunction, things change. Despite Matt and I both being extremely ill we went to the neurodevelopmental physician. We waited 6 months for this appointment and we weren't going to wait another 3 months to go (I called and that is when the next available appointment was). I will be honest, I went in thinking that despite everything this child has been through and is going through, she was doing well. I thought that things were progressing well. Boy was I wrong. I can blame the flu, but the reason I left there feeling nauseous was because of what we were told. 

Lets start with the eyes. We already knew that her right eye was crossing in. It wasn't getting any better with patching so we are patching now for the purpose of not losing sight in that eye. We patch the left eye for 4 hours a day. Well what we didn't know (well I asked her ophthalmologist at her last appointment) was that she has what is called visual neglect to the left. Basically she doesn't have peripheral vision on the left side. So now we have to add vision therapy to her busy schedule of appointments. I don't know how I am going to work on the left eye when that eye is patched for 4 of her waking hours a day. 

We knew she had cerebral palsy and knew that it affected the left side of her body. I thought she did well with her leg and that her hand/arm was improving. I was wrong. Her arm and hand are really bad. This is something that will have to be addressed with restraint therapy. Basically in OT (and at home) her right arm will need to be restrained so that her left arm has to do everything. This means we will be moving back to OT every week. There is a chance that PT and OT will have to increase back to twice a week, but that will be discussed this week at therapy. I will say that today during lunch I let her drop 8 pieces of food to the dogs all because she did so with the left hand. This was big for Amelia as she doesn't really touch food with her left let alone pick it up and move it over the side of the high chair to drop it. 

Her left leg isn't as it should be. The type of CP she has is spasticity. It is a tightness of the muscle. Right now Amelia doesn't appear to be in pain because of this (there could be a reason) but it could cause her pain in the future. Her left leg is too tight. Both of her ankles roll in. When she sits she leans which isn't good. So to help with this we have to purchase a stander. Basically it is a contraption that she is strapped into in a standing position. She will need to be in this for multiple hours a day once she gets this. When we go to therapy next week we will discuss this. Once she's in this stander and doing well we will have to purchase a walker. Basically the same thing as a stander but with wheels. Because they are built for the individual child these can't be rented and they are well over $3000 each. IF, and she stressed the IF part, she can walk Amelia will most likely have a limp. She said it is too early for her to tell if she will be able to and we have a bunch of therapies to try first. There are also medications that we can put her on to help with a few of the issues (or try to help with them) but she thinks that we need to exhaust therapy first. I agree with that. Let her try to build the strength on her own. 

Amelia has sensory issues. More so on the left side, but it affects both. This could be the reason why she never seems like shes in pain despite all shes been through. She may not understand or feel the pain. This is not a good thing. We will be working more at home with sensory therapy. Letting her experiment with hot and cold, rough and soft, prickly and smooth. This out of everything we will have to do will be something that is fun for her. We already work on this, but need to amp it up. 

When I told her doctor that she seems to be smart when it comes to things like mimicking and understanding, she told me not to get used to it. Decreased mental ability is expected with a brain injury like she sustained as well as behavioral/mood. We are already dealing with issue of her having behavioral/mood issues because of her anti-seizure medication, so this should be fun. In the past week or so she has stopped crying and is now just screaming and shrieking. I figured it was an age thing, but I guess this is expected for her. The intellectual part I'm not worried about since facebook had the meme about if a mother has a big butt her child will be smart. Amelia is bound to be a genius with only half a working brain :) All kidding aside, I am already thinking about her IEP and her 504 for school. I am wondering what would be the best situation for her when she starts school in 5 years and 6 months. I know that time will tell me what she will be able to do and what I will need then, but I am a planner and need to take care of my baby. 

I know people will say "oh she's still cute" or "don't worry, she'll be fine" or "she's at least happy" or "be thankful for what she can do". I know they don't mean to be, but those comments are hurtful. Yes she is the most beautiful little girl I've ever laid eyes on. In her daddy's eyes and my eyes she is perfect. But that doesn't make going through this any easier. Her looks have nothing to do with the daily struggles she faces. I know that doctors are not God and they don't know everything. I know that they are only human. But they have lots of research and schooling to give their opinion and I value it. I take their dx and I do everything that I can to help Amelia defy those odds. That being said, she will never be fine. She will always have a condition that the only option to help it is brain surgery. She will always have CP. She will always have nasty reminders all over her body from all the surgeries she has had and will have. She was a happy baby. She went with the flow, but that is because she had to. Now she isn't happy most of the time. She is frustrated because she can't do things that she sees other children do, like walk, or crawl. She wants to get around but she can't and is unhappy about it. She has to wear a patch on her eye for hours a day. She has to wear a helmet 23 hours a day. She has appointments or therapy almost every day of the week. That isn't something to be happy about. Matt and I are beyond grateful for our little girl. We thank God every day for blessing us with her after we prayed for over a decade to have a child. We are thankful for the doctors that were put in her path and saved her life. We are thrilled with the progress she has made. That doesn't make it easy to watch your child suffer. Think about when your child has a cold or an ear infection. Think of how helpless you feel and how you just want to make your child feel better. It doesn't mean you aren't thankful for all the healthy days. It just means you are a caring parent who doesn't want to see their child suffer. We are ready for whatever God chooses to do with Amelia, but it still doesn't mean our hearts can't hurt for her. 

So this is the life of my 14 month old child:
*Helmet 23 hours a day
*Eye patch 4 hours a day on left eye
*PT, OT 1 hour a week at clinic (could be increased) and lots of home therapy
*Vision therapy on left eye (right now we are working at home until we get an appointment with the therapist. Will probably be the same as PT and OT)
*Hip brace for naps and bedtime
*Stander for multiple hours a day
*Sensory therapy for at least an hour a day
*Countless appointments a week

Pray for us please!!