Sunday, September 30, 2012
Tuesday, September 25, 2012
We had an appointment with Hannah's Neurologist in July. She was very happy to see the progress Hannah made, but was concerned that she wasn't completely better yet. They expected her symptoms to resolve within a few months, and here we were 6 months later and Hannah was still trying to gain enough balance and coordination to walk. She mentioned a couple of treatment options that might speed recovery. IVIG or steroids. Steroids never seemed like a good idea to me. Part of Hannah's illness has included emotional instability that made her irritable, sometimes inconsolable, and not sleep very well. All of which are possible side effects of steroids. IVIG I didn't know much about, so we told her we would think about it and get back to her. IVIG stands for Intravenous Immunoglobulin. It is basically antibodies pooled from thousands of donors and administered through an IV. I was hesitant to put Hannah through any treatments because she had been through so much and because there was no guarantee that it would work.
IVIG is an antibody replacement therapy that is usually given to patients who are immune deficient. Because Hannah's condition is so rare (like 1 in 10 million), there haven't been many studies on the benefits of IVIG and Post-Viral Cerebellar Ataxia. I did some research on it, and we prayed about it, and started to feel good about trying it. And then the answer I had been looking for came in the form of a really bad flu. In early September, Hannah got very sick with a fever, vomiting, lethargy, and congestion. When she got sick her Ataxia (shaking, incoordination) got much much much (did I say much yet?) worse. All the progress she had made since January seemed to vanish overnight. She could no longer walk, she couldn't talk very well, and she was sleeping all day long. It was terrifying because it seemed like we were back in the thick of her illness again and we didn't know how long it would take her to recover this time.
The only thing that brought me comfort was the fact that her neurologist had warned us that if she got a cold/flu it would make her Ataxia symptoms more severe. So we watched her and worried and nursed her back to health and gradually, as she recovered from the flu, the severity of Ataxia decreased too. Getting sick was the answer we needed because we could see how when her immune system got kicked into high gear to fight off whatever virus was making her sick the autoimmune attack on her cerebellum also increased which caused the Cerebellar Ataxia to get worse too. So we contacted Hannah's neurologist and scheduled and IVIG treatment with the hopes that the influx of antibodies would in turn tell the immune response on her cerebellum to back off.
On September 13th we took Hannah to the hospital for her 6 hour long infusion of IVIG. As hard as it was to stand by and watch the nurses place an IV in her tiny arm, it was even harder to keep Hannah from looking down at it for half of the day while the treatment took place. She was so scared, but as soon as we explained to her that it was medicine to make her all better she calmed down and was very interested in all the numbers and beeping. As always, she handled everything like a champ. We took her home and waited to see what kind of reaction her body would have.
The next day she seemed fine so we took her to Physical Therapy. She only lasted 30 minutes before she tried to take a nap in the swing. She fell asleep in the car on the way home and slept for 4 hours. When she woke up she vomited a couple of times and had a bit of a fever. They told us that flu like symptoms were a possibility, but it was still hard not to be concerned and hope that we did the right thing. In a couple of days she was back to normal and we were starting to see improvements in her Ataxia.
It has been 12 days since she received IVIG and we feel so blessed to tell you that the treatment is working. Hannah isn't just walking now, she is running!! The most beautiful run I have ever seen. Her personality is shining through, she is calmer and happier. At church on Sunday she sat with me the majority of Sacrament coloring and sitting calmly. A few times she folded her arms and whispered to me "I'm being reverent mommy". People at church who have been praying and rooting for our little girl to recover were in tears as they saw her run through the halls and said they felt like they were witnessing a miracle. Her Physical, and Occupational Therapists were both amazed by the improvements just since seeing her a week before. She is having fun playing dress up again and running up and down hills. She is picking up balls and throwing them without tumbling to the ground with too much effort. She is able to just be a an active playful loving kid again.
|I took this picture right after she woke up this morning. She hasn't woken up this happy in like 9 months.|
Posted by Gretchen at 11:31 AM
Monday, September 10, 2012
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.
|Hannah in May when she still needed her walker and helmet to get around.|
|Hannah in September, loving every second of walking on her own again.|
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.
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.
Posted by Gretchen at 8:33 AM