Treatment and a Miracle

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.

We hear time and time again that prayers aren't answered in our time, but in the Lord's time and I feel like He had been trying to tell us she would get better but our fears were getting in the way of truly knowing that she would be ok.  It took 9 months and our prayers are finally being answered.  She will be able to achieve and excel and live a happy life.  For those of you that are dealing with struggles and heartaches and health issues my heart goes out to you.  Things may not miraculously get better overnight, but eventually things will get better and you will see His hands were always there to lift you up and guide you.  Thank you for your interest and concern in our daughter, for your thoughts and prayers.  For being the earthly angelic hands to lift us and serve us when our world came tumbling down.  I just want to let you know that I know that Heavenly Father hears and answers our prayers.  He will answer yours too.