Maddie is Crawling!

PHYSICAL ACCOMPLISHMENTS:

Maddie's Physical Therapist prescribed a "Gait Trainer" for her and it just arrived! It is a special type of walker that provides a bit more support than a regular walker. Though it is very "equipment-y" looking, it’s a sassy purple color that was very fun to pick out. (And should coordinate well with most of her clothes!!! ;-) ) The Gait Trainer will allow her to be in standing a lot more. While in it, she is learning to move her legs in a walking motion, but that certainly isn’t coming naturally to her. Our prediction (let’s see if we are right!) is that she might be walking independently by the time she is 2 ½. This might be a bit of an ambitious goal, but we want to continue to expect a lot out of her and keep her motivated. Please send us some walking prayers.

Lastly, we are very anxious to get her started on her horse therapy. We continue hearing how amazing this type of therapy can be. This rainy weather has not permitted us to get started yet, but we’re thinking this will be a good summer activity for the whole family! (Savannah could take horse-back riding lessons also, but she told us she’s afraid of horses! We’ll see what happens after she sees her little sister on one...)

Madison continues to have therapy every day of the week.  She has a new Infant Development Specialist who works with her once a week, and we are extremely happy with the progress she is making.  Her schedule is not so overwhelming now, and has just become part of what we do each day.  Some therapists still come to our home, and others we see at a therapy unit at Sonoma School.  We're still able to squeeze in a few play groups and storytimes when she's not too tired!

LANGUAGE ACCOMPLISHMENTS:

Madison is struggling greatly with her speech. She seemed to show some improvement, and we thought she had some words, but this slowed down. We are not really considering this a regression, however, and are just assuming that because she is working so hard on her physical skills right now, she can’t concentrate on her verbal skills. This is typical even of "typical" children. Here is to hoping! She is still very quiet, but if we try really, really hard we can get her mouth going. At this point we are just looking for and praising all noises - grunts, squeals, laughter, anything! She needs to understand that her voice is a means of communication. She still is not able to do much of the baby sign language, but she understands almost all of it. She does shake her head "no" now (very adamantly I might add!) which is extremely helpful. She also can do the sign for milk and is waving bye bye and blowing kisses. Any communication from her is beautiful! She laughs so much now, and occasionally cracks herself up which is music to our ears. Big sister can also really get her going! She also gets very verbal when she hears familiar voices on the phone. Her speech therapist is amazing at getting her to make sounds. I have learned so much from her.

THE CONFUSING DIAGNOSIS

We have had some confusion with her diagnosis and this has caused some frustration. We’ve had one doctor say she has "outgrown" her hypotonia. While spending a whopping ten minutes with our little noodle, he said she is no longer a little noodle anymore. All of the other doctors and therapists firmly disagree. This same doctor also told us she could possibly never read or write. I’d like to say we appreciate his candor and honesty, but we do not and we do not agree with him. We have been told by everyone else to ignore his comments, so we are trying. We have been told by some that Madison fits the definition of having mild Cerebral Palsy to a tee, but others say we can not make that diagnosis until she is a bit older and walking. Everyone agrees on her Ataxia (her random and jerky movements), however, and some think this is a bigger problem than her low muscle tone. She is also still considered by all to be GDD - Globally Developmentally Delayed (delayed in all areas of development.) Personally, that is the diagnosis I like the least and is the hardest to accept. However, we need to remember that whatever her diagnosis is, this will not change what we are doing with her. CP or not, she will still be in all of her therapies. If not having a firmer diagnosis by the time she is three prevents her from receiving any services, we will find a way to get her the diagnosis she needs. We are kind of off of our labeling kick, and feel content with what we know and understand at this point. I think we are just a little worn out from searching for answers and confirmations. This goes in waves though, and we’ll probably be on a diagnosis hunt again sometime very soon...

We have also been learning and trying so hard to understand and accept that her prognosis is completely up in the air.  Every child that I have read and learned about who has Hypotonia or Ataxic Cerebral Palsy has a completely unique story.  Some are very high functioning, go to regular school and don't have any cognitive issues.  Others are still not walking, have lots of learning disabilities and will struggle for their entire life.  So basically, we have no idea what Madison's future holds.  This is very hard to comprehend.  When we get caught up in thinking about this, though, we just look into her beautifully bright eyes and remember her doctor saying, "The lights are definitely on in Madison's house!"  We can only hope and pray that no matter what her future holds, she is a happy girl.  We also take comfort in knowing that we are giving her everything she possibly needs to be the best MADISON she can be. 

WHAT THE HECK HAPPENED?

Besides all of this, our last concern as of late is of a medical nature. Madison had some type of "episode" mid-March which we are still trying to understand. It could possibly have been a small seizure, but we really do not know. She seemed to lose all control of her muscles and was shaking and crying for about ten minutes one morning. (Most seizure don’t involve crying, but everything else that happened was seizure-like.) Then quite suddenly, she was fine and over it. It wasn’t like the flopping around seizures most people think about when they hear the word seizure, but it was something... Her Neurologist has scheduled an EEG for her, which is something we still have yet to learn all about. We are not too freaked out, but we just want to take all precautionary steps and be proactive in figuring out what could have happened. We are hoping it was nothing...

A bit lengthy, but that just about does it. We do not want to be annoyingly positive and upbeat, but we really feel hugely blessed with our two kind and beautiful girls. We are also blessed with an amazing support system of family and friends, and we appreciate all of your thoughts, good wishes, and prayers more than you’ll ever know. Our next endeavors in life are to plan and prepare for a co-Wizard of Oz birthday party for our little Dorothys and to go see The Wiggles live in concert! Things might be a little challenging in our household, but no one told us we shouldn’t have any fun while getting through all of this... These years are going by way too fast not to enjoy every moment.