Tuesday, September 16, 2008

We are hanging in there!

We are here at the NIH and doing ok. We are all very tired but doing good. Collin is being such a trooper. The first couple of days were very hard for him but he did better today. He is averaging around four doctors appointments a day as well as tests that have been ordered. Our day starts at the hospital at 9am and today we did not get back to the children's Inn (it is like a Ronald MC Donald house) until 4:30. We are getting good news and not so good news. I will update more about that latter. Regan is having a blast playing with Aunt Nancy while we are at the hospital. Today they went to the zoo. We have had chances to go into DC and have a little fun as well. Please continue to keep our little man in your prayers. I am constantly amazed at his strength and forgiveness. After going through so many things he will still blow them kisses while we are walking out the door. He truly has the love of Christ in his heart. He does not understand why these things are being done to him yet he can forgive them anyways. I hope that some day I can be as incredibly strong, loving, and forgiving as my sweet baby boy.
We are VERY excited that tomorrow we will be able to meet another family that has a child with TTD!!!!!!!!!!!! We have not EVER met anyone or seen anyone else with this illness since it is so rare. So, this opportunity is just indescribable!!!!
Thank you all for your support we feel it!!
Nancy, I don't know when or if you will read this but THANK YOU!! Thank you from the bottom of my heart for all that you are doing out here to help us. You dropped your work, husband, and kids (wink) to be with us. I can not even begin to describe in words how comforting it is to know that I don't have to worry about Regan while we are taking Care of Collin. I feel so lucky to have such an amazing and supportive sister!!! I LOVE YOU!!! Thank you!!!!!


arroyo fam said...

Hey guys,
you've been on our minds and in our prayers! Abby can't wait to for Regan to be home to have a dress up party. We love you all and hope your travels are safe. Give a big squeeze to Collin for us!

the arroyo fam

Amy said...

Collin is so amazing! As are you, Julie and your wonderful family. I hope that Collin continues to do well with all his appt's and tests. That's really exciting that you will meet another family with a child with TTD! We've never met anyone else with Lily's syndrome either and I can only imagine how exciting that would be. You guys are in our prayers.

Anonymous said...

thinking about all of you....

and hunter recently typed up his christmas list and gave it to me, a visit to see collin was at the very top. it made us smile, hope it makes you smile too. collin is always thought about, pictures of his smiling face are every where.

wishing you more good news than bad, and a comfortable trip home.

love from all of us.

Evs & The Hubby said...

You have been in our thoughts and prayers and it is great to hear the update. I am always amazed by your family and by Collin. I share the story about this amazing bor we were blessed to know while living in LB with many people. I hope the rest of teh week goes smoothly and am excited you get to meet another family with TTD.
Take care and we love you!

Erin said...

We are praying for Collin and your family. You are so amazing Julie!