We made it through the first week! Well, almost Madie has OT and PT tomorrow morning and then she is off until Monday. I have probably seen the biggest improvements in speech. She is really interested in eating. The dietician has changed her feeds to every 4 hours instead of every 3. This gives her more time in between to actually feel hungry. Soon we will start ordering her food trays and depending on how much she will eat, we can take away some of her formula for the next feed. The trick is going to be finding something Madie will eat a lot of…besides ice cream and Cheetos. She loves the loaded baked potato soup from the cafeteria and I’m with her. It taste like delicious cheese, potato, bacon and cream all blended together with a dash of Heaven thrown in for an added bonus. Definitely not something I would feed my children 5 nights in a row, but I’ve done just that for Madie. I might have to drop my healthy food values a little until she really gets better at eating and then reintroduce them later but for right now she will still be getting 100% of her nutrition from her tube feeds at least for a few more days.
Madie’s occupational therapist, Megan, stated that her goal is to get Madie to a one year old level. Megan has been using blocks and getting Madie to reach for and attempt to stack them as well as working on her fine motor skills with her hands. Madie’s ataxia makes her movements very jerky especially when she is excited so simple tasks, like picking up a block, are much harder to accomplish. It is very clear that Madie’s brain understands what she WANTS to but lacks the capability to make a plan, which is referred to as motor planning. Her OT also wanted to get a vision screen for Madie which we had done today. We know that Madie can see and she tracks objects side to side and up and down. Since some of Madie’s brain damage was to the area that controls vision we wanted to make sure she didn’t have any double vision or need glasses. The eye doctor said she for sure does NOT need glasses but she wanted us to follow up with a pediatric ophthalmologist when we leave because she might have an intermittent strabismus in her left eye. So basically, her eye muscles are not as strong on the left side as the right and when she tracks to the left her eye doesn’t move like the right side and she tends to want to turn her head. The doctor didn’t notice it every time and more often than not Madie’s eye did what it was supposed to but early intervention is best to avoid a potential surgery in the future. This all makes sense because Madie’s muscle tone has always been more intense on her left side since she had swelling on the right side of her brain and your eye movement is controlled by muscles. So chances are this could require no action or maybe we’ll get Madie the cutest eye patch the world has ever seen to wear for a little bit to help strengthen the left eye.
My days of going to PT with Madie are over. In the past I am a major distraction and she acts like a grouchy diva if I try to sit in or participate in her therapies. Since we have been here she has been all smiles while she works away and I cheer her on…until yesterday. She screamed like someone was hurting her until I pick her up and then she smiles and lets out a big sigh! So, starting tomorrow I’ll watch from the hallway so she will once again be a productive participant, and not a screaming distraction, in the therapy gym.
Dr. Raji decided to try to go back up just a smidge on Madie’s muscle relaxer since she has grown so much recently. Her hope is that with just a tiny bit more baclofen, Madie can better control some of her ataxia. We should see beginning results from this by Monday and if it is too much then we can go back down on dose and try something else.
Tomorrow Matt and Molly Michael are coming to visit and Madie and I are so happy to get to see them! Matt will be staying with Madie here at OCH and Molly Michael and I will be going to stay with one of my college roommates. Then Sunday we will come back to OCH and celebrate father’s day with one of the world’s greatest dads! Thank you for continue prayers for Madie and our family. We are, as always, so thankful for all of the support and encouragement we receive from all of you.
With greatest gratitude,
Kristin, Matt, Molly Michael and Miracle Madie
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