Claire's 1st year

Happy 1st Birthday Claire!!!

Happy 1st Birthday to my most precious gift from God!! We love our Claire...like you couldn't tell and cling to faith and hope that she will come out of her seizure disorder and be made whole!

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!

Going to the pool for therapy

For the last 2 weeks, Claire has been able to go to the pool @ Salem Rehab for her physical therapy. Admittedly I probably enjoy it more than she does. Rehab keeps their pool a balmy 94 degrees and the anti-gravity on my pregnant hips feels awesome. Last week Claire worked really hard in the pool and had a great time...being very vocal and giving lots of smiles. Getting in the pool helped her brain realize she move her arms and legs against gravity even outside the pool environment. Claire has been lifting both her legs at hip level and putting her feet in the air even while lying down. We are so excited for this progress! Claire is also using her right arm against gravity quite a bit and beginning to use her left arm...again...huge progress for Claire! All of Claire' therapists are extremely excited by her progress in the last couple of weeks....as are we. Thank you for the continued prayers for our precious girl!


We have to put saran wrap & tape over Claire's g-tube before going into a public pool.


Claire all ready to go and get in the pool.

On a side note...Tristan is expected to arrive in 6 weeks...my how time has flown! With a couple of exceptions I have had another model pregnancy...however I am looking so forward to no longer being pregnant 18 out of the last 24 months is a bit much...but I just keep reminding myself that God's plan is ALWAYS the right plan. Tristan's arrival will no doubt be tough and a big adjustment but we couldn't be more excited to have our newest addition. With God's guidance, peace, and comfort we will get through our transition without too much anxiety.

Much love~The Hales Family

Brief update

Claire had an MRI done yesterday to see what her brain looks like at age 1 compared to her last MRI at 5 months old. We hope the MRI will shed some light on her seizure disorder and developmental delay but neither is very likely. We will have the results on March 15, when we next see the neurologist and metabolic specialist. We ask that you pray for tact when the Dr.'s give us the results of the MRI...we know Claire is behind and we pray and trust that God will heal our daughter, but it can be very discouraging when the Dr.'s give test results especially when they can not scientifically understand what is going on.



Claire all tuckered out after physical therapy last week.