We hoped and prayed that Hannah would miraculously get better over night. But as you all know, sometimes our prayers aren't answered the way we want them to be. It has been 8 long and challenging months since Hannah became very sick and was diagnosed with ACA. Each week she is progressing and performing everyday tasks a little better. To avoid despair, Jake and I learned to focus on how much she has improved since her time in the hospital. To compare Hannah to the perfectly healthy little girl she was last year is heartbreaking, but when we think back to how sick and helpless she was in January and February, we realize just how far she has come.
In January, Hannah didn't
have the coordination to sit up, play, crawl, walk, speak, eat, or even control her eye movements. Hannah girl is light years better than she was during those scary months. For those of you who haven't seen or heard yet: Hannah is walking again! Three months ago, on May 31st, Hannah took about 10 steps on her own. She took off walking across the living room, stopped half way and exclaimed in the most jubilant voice "Hannah's walking!!!" and then preceded to take a few more steps. It was such an amazing moment of triumph for all of us, 5 long months in the making.
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| Hannah in May when she still needed her walker and helmet to get around. |
Not being able to walk was one of the most frustrating things for Hannah. So, every night after we put Liam to bed, we would practice walking with Hannah in the living room. Jake and I would sit on opposite sides of the living room and take turns supporting and encouraging her to walk from me to Jake and visa versa. The first few weeks she would stumble and barely make it a step. But eventually she would make it a few steps before we caught her as she tumbled to the ground. And by the end of May she developed enough strength and courage to make it 10 incredible steps on her own. By July she was walking 80% of the time and by August she hardly had to crawl at all. She still runs into things sometimes and falls down quite a bit, especially when she is tired, but gradually her coordination is getting better. She can stand up in the middle of the floor without any help and prefers to walk without the help of our hands anymore.
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| Hannah in September, loving every second of walking on her own again. |
Hannah's independent drive to do things on her own has definitely helped her overcome this illness. The other day I was sitting down watching her prepare a tea party and it took her 5 minutes to do something that would normally take 30 seconds. She took her trembling arm and picked up the little pitcher off the top shelf, grabbed a cup in her other hand and held them both close to her chest as she poured some "tea" into her cup. Then she struggled getting the pitcher back on the shelf but she kept adjusting it and trying to get her shaky arm to do what she wanted and didn't give up until it was sitting in the same spot she grabbed it from. My eyes welled up because I learn so much from her. I couldn't do what she has done. The fact that she doesn't just want to do things on her own, but that she wants to do them well has benefited her infinitely with this illness.
Everyday we see more and more of the personality and joy that defined our little girl before we lost her for a time to Cerebellar Ataxia. Two Sunday's ago our family was getting ready to go to church. Hannah saw that everyone was getting dressed, so she announced "I'm gonna get dressed", and then went in her room and closed the door behind her. A few minutes later we decided to check on her. She had gone through her dresser, picked out a perfectly matched skirt and shirt, and started dressing herself. For most 3 year old's that is nothing out of the ordinary, but for Hannah this was a huge milestone she couldn't do for 8 months. She is back to some of her adorable habits of collecting her favorite toys and little treasures from around the house and putting them in a purse and carrying them with her everywhere she goes. A little quirk that I didn't know I missed until I saw her do it again.
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| That smile. |
Her talking is starting to improve almost daily. The coordination to speak has been a slow process. Back in January she could only say a few words and they were very labored and static. She is now talking in sentences again and constantly asking us questions. Jake and I can understand everything she say's, but people who aren't around her a lot usually need us to translate. Last night she made a huge step in communication when she was able to tell us about something we didn't see happen. Here is what we saw: Liam and Hannah both screaming and Hannah grabbing Liam by the face from behind to pull him off a car she was playing on. I told Hannah to apologize to Liam and give him a kiss. She said she was sorry but then said, "He needs to say sorry to Hannah". I asked her why he needed to say sorry and she showed me the bite mark on her hand and said "Baby bruh bit me hard! He needs to say sorry." The way she was able to explain herself and tell us exactly what happened was so impressive because she couldn't communicate well for months.
She has been sleeping in her own bed for a few months now. Most nights she will wake up hysterical and I have to go in and calm her down but it doesn't take long to get her back asleep, which is a big improvement from months of sleepless nights. Overall her health, sweet demeanor, and everything Hannah loved to do is slowly within her reach again. Her patience with herself has been extraordinary. She has adapted to her limits and slowly tries to exceed them. We love you Hannah girl! Your strength and courage throughout this whole ordeal are inspiring.
