Family Update- June 6, 2011

So once again I have fallen behind in keeping the blog up to date. The daily challenges of raising two babies is...well...challenging. Tristan is now almost 9 weeks old and he's growing like a weed. Tristan seems to be healthy and is reaching his milestones on time. We love having Tristan and enjoy the richness he has brought to our family. Tristan smiles and "talks" and is trying to figure out how to roll over...he has had success a couple of times but I think it was luck...not skill. :)

Jake is running 1000 mph at work and is gone 2 nights a week at least two weeks out of every month. We have struggled a bit adjusting to one income and Jake's bonus structure changed but as always...God provides! We also thank God for my parents who very graciously give up their time (& sleep!!!) to stay with me and help care for the kids while Jake is out of town. We can not really tell them "Thank You" enough.

For myself I have gone through some major ups and downs in the last 9 weeks. I love my children dearly but Tristan's arrival forced me to deal with feelings I didn't even know I would have. I love Claire and she will forever have a most special place in my heart...and I had to learn that it's ok for me to feel that way. I had to learn that I am not favoring Claire for loving her in the way I do...that I love Tristan just as much but in a different way. I just thought that I would magically love my children the "same"...but in fact I love them differently but EQUALLY. I struggled with loving Tristan and enjoying all of the "normal" baby things he does. I feared bonding with my son. However, with time and a TON of prayer I have moved past the doubts and fears and thoroughly enjoy my "job" as mommy!

And now...what you've all been waiting for...the update on Claire...

Claire is doing amazingly well...we are so very proud of the progress she is making. Claire is growing stronger and is learning to communicate...even if she doesn't use words. I would like to impress upon all of you that despite her disabilities Claire is extremely smart and she is far from lifeless. Claire has learned how to be mobile. Claire arches her back and plants her feet in the floor to scoot to where she wants to go. Claire also knows that if she scoots to someone's feet they will pick her up. Claire still lacks strength in her neck and arms but her legs and trunk are coming along. Claire will now "help" when we pick her up by stiffening her back. Claire has been given a therapy "room" to help with her vision development and after I put her in the "room" one time she decided she liked it and will go in her "room" voluntarily. Claire still eats baby food when she is alert enough but receives a majority of her nutrition through her g-tube. Claire is waking every day and we love it!!!

As her diagnosis goes...she still remains a mystery. We have finally received results from her skin biopsy and it was negative for the Complex 3 diagnosis the Dr's were hoping to confirm. So, that being said, they are still looking for a mitochondrial cause for Claire's seizures. There is a research study being conducted in Belgium and we have agreed to send her tissue to see if they can find anything useful. In the mean time we continue to treat Claire's seizures with medication and supplements. We just recently tried to wean one of Claire's medications and it did not go well. I think we will be able to put her at a lower dose but as of right now she will not be able to come off the medication.

As always we appreciate your love and prayers...keep them coming!