Claire's 1 year MRI

I’m sorry for the delay in getting this posting out…it was a long, hectic week. After Claire’s neuro/metabolic appointment on Tuesday, she hit her “bad” streak of days. Claire spent Wednesday through Friday either sleeping or having some really tough times with her seizures. Thankfully today she woke up for a couple of hours and even gave us a couple of giggles…hoping this means she’s trending back to her “good” days of awake with alert time.

The results of Claire’s MRI were, for the most part, very positive. There was what we’ll call a “neutral” change…the MRI showed cystic changes in her white matter. What does this mean? Not too much. The white matter in our brains is the communication cells and there are some spots in Claire’s white matter that are “different” for lack of a better word. Basically we were told that this means there are about 12 more genetic conditions they could test for…all very rare and only 1 of the conditions would be treatable. We got insurance approval to test for the treatable condition and had some blood drawn Tuesday…the results will come back in approximately 6 weeks. The Dr.’s have left it up to Jake and I if we would like to test for any of the other conditions. At this point we probably will not opt to have any further genetic testing done. Each of the conditions left to test are extremely rare and the Dr.’s feel there is not a good chance the test will show anything since the rest of Claire’s genetic tests have come back normal. The only 2 benefits of a positive result from one of the tests would be “labeling” Claire and seeking out the handful of people worldwide that have the same condition and see if there has been any “treatment” that helped their condition. In other words…these conditions are just so rare it’s really not worth the time or money to complete the testing. The POSITVE news from Claire’s MRI is very exciting. Claire’s brain is growing & developing!!! The neurologist was not concerned with the structure or size of Claire’s brain. The neurologist was also happy to point out that there were no abnormalities or atrophy in Claire’s brain which is amazing due to her seizure activity! Praise God for his protection over Claire’s brain!!! Just to be sure nothing was missed and because 2 heads are better than 1 the Dr.’s from Doernbecher’s are sending Claire’s MRI results to Denver Children’s Hospital for their expert input. We hope and pray they feel as positive as the Dr.’s here did.
We are not making any medication changes at this time and we are waiting to hear back about whether we will make any changes to Claire’s supplements—if we do they will be minor. The neurologist was pleased to hear about the progress Claire is making in her therapy sessions and even got to see Claire awake and wiggling at her appointment. Claire’s neurologist was quick to point out that Jake and I have become “honorary” pediatric neurologist and pharmacists…which for the situation we are in is a nice compliment.

Aside from Claire’s “bad” days, she continues to impress us with her development when she is interactive and awake. Claire still gives us sporadic giggles which bring never ending joy! Claire is beginning to use her arms and legs against gravity and is almost ready to turn herself from her back to her tummy unassisted. Claire can also use her legs to move herself around a little bit. In fact, a hard lesson in parenting occurred the week before last. Claire is now mobile enough to fall off the couch! I cried…Claire didn’t even seem to notice. I think I am finally over my guilt of not watching her close enough and coping with the fact that I can never protect her 100%. Though it is miniscule in comparison…it must be what the Lord feels each and every time He sees us falter. I cannot imagine how much God hurts when we fall!

In 8 shorts days Claire will be 1 year old!!! Where has the time gone??? We are so thankful and blessed by Claire. The last 12 months were quite a journey and each day that is coming will hold something new. Our trials have been many but we are ever thankful and grateful for the joys in between the “dark” days. We continue to pray and trust that God will heal our precious Claire and that one day Claire will read this blog and understand God’s grace. We continue to thank you all for your interest in Claire’s story and for the constant prayer you provide. It is so helpful and encouraging to know that Claire is loved by so many!

I’ll close by saying our dear son will be here in a month or less. Despite a couple of bumps in the road the pregnancy was great. I am feeling the aches of late pregnancy and cannot wait for Tristan to make his appearance! We are now praying that Tristan will make his entrance into the world a little bit early. We will be tired for sure…but to have a healthy body back will make me feel much better.

God Bless and thank you!