Wednesday, September 23, 2009

Lots of Things...

-0204-0196

What a past few days we have had. We started Gavin's Oxygen about two days ago and I really think we are seeing a difference. Last night I was awakened by the baby monitor -- I heard Gavin's little voice babbling on about his Thomas movie. I have never been so happy to wake up at 2am! This is the first time I have heard Gavin say a word in several weeks, needless to say it made me take a sigh of relief. I guess I'm cautiously optimistic that it's the O2 giving Gavin the support he needs. I think his coloring is better, not so grey and I got several comments from people today commenting, "wow, his eyes are open." I'm trying not to get my hopes up, as Gavin is far from being back to his old self, but it just feels so good to see a glimmer of hope in this situation.

Today I found out that Gavin's cultures from Monday are positive for two bugs. Also found out he is in need of blood, albumin, IVIG and we are going to start the GCSF injections. Tomorrow we will spend the day at the hospital getting blood and GCSF and Friday Gavin will get the IVIG and Albumin.

We also found out that Gavin's power chair is ready to be picked up -- this Friday! Our blood pressure also went through the roof as we realized that our van is not done! We ended up using a ramp van from the dealer who will be working on our car so we will head over to the wheelchair clinic after Gavin's infusions and try out his new wheels. We have tons of anxiety about Gavin's ability to use his new chair. Gavin is a different child since we first put him in that demo. We'll see how it works out.

That's about it. Thank you all for supporting our little family.

16 comments:

Tina said...

I'm crying tears of joy for you right now on hearing his little voice.

Paige said...

Aww, I love that you woke up to his sweet voice! I'm sure that nothing has been more amazing than that! I hope you all have an easy day tomorrow. Lots of prayers your way!

Anonymous said...

lots of prayers for Gavin and your whole family...he is one special little boy - I check in on your blog everyday for updates to see how he is doing....

Rachael said...

What a relief that must have been, at two AM, realizing that he was talking... I got chills reading that part (the good kind of chills :) )
Go Gavin!

Tiffany Lockette said...

I'm at a loss for what to say. I have been following Gavin's story for a while and I am amazed at what he has to deal with day in and day out. No baby should have to deal with what Gavin deals with each day. It breaks my heart for him and for you. I am so happy that you got to hear him speak. I know that brought you some comfort. Hopefully he will be speaking more and more soon. My prayers are with you guys.

Lisa Marie said...

I'm so glad things are looking up (a little at least) and I'm excited to see Gavin in his new chair! So sweet that you woke up to his voice... beautiful! :) Praying for a peaceful rest of the week for all of you.
Hugs and Blessings, the Walks

Ellen said...

Thats so great that you got to wake up to hear Gavin talking away!
I also check back everyday to see if you've posted about your sweet boy!I'm always praying for Gavin!

Amber said...

I've been reading here for a while...love your photography! :) I wanted to tell you that we started oxygen with my 19 month old boy with mito a couple of weeks ago and have seen amazing benefits from it. He is more alert and just "there", it seems. He started really talking 3 days after we started O2 and doesn't have nearly as many energy crashes through the day. He is also starting to slowly gain weight again...after being completely stagnant on that front with FTT...he's gained almost a pound in 2 weeks.

I hope that you see some of the same benefits for Gavin. I have been amazed at how much of a help it has been for Nate.

Heather Nicole said...

Good news :) Looks like some O2 is the way to go! Hopefully after all his blood and injections he will be 100% Gavin again! Love you all, Heather

Robyn said...

I am so happy about the "Thomas" request. Such a joy! I read your blog every day. I don't know you but I am compelled to read and pray for you daily. Just know there are probably hundreds like me, those that read but don't comment. Love to you and yours, especially that little Gavin!

Jen said...

how sweet I bet his little voice sounded! Maybe this is the beginning of things starting to look up for him again! Prayers and thoughts being sent your way!

Shelly said...

Hello,

I have never posted a comment before but I've been following your blog for a while. First, your children are absolutely gorgeous, and I think you and your husband are amazingly strong! I was at the Braves game this past weekend and before the game they had a bunch of families with children with mitochondrial disease walk the warning track. I thought about your family and the awareness those families were raising at the baseball game!

I can't wait to hear about the new wheelchair, and I'm so happy to hear that Gavin is doing better!

Jennifer said...

Glad to hear the O2 has helped & hope all went well with the new power chair today!

Reagan Leigh said...

I'm so glad you've seen some improvement. It's so tough to go for so long with no good news. As always, Gavin is still in my prayers.

Sarah said...

Dont' know much about the gut stuff...but I'm a mom of a little one whose been on o2 for 2 years. The body must breath first....so if that starts getting impaired...the body will focus so much on keeping them breathing...that everything else gets worse.

It absolutely can do amazing things and the nice thing is it's non invasive and doesn't hurt! It's great stuff! I'm so happy it's helping so much!!

Baylee and Blair's page said...

That must of been an awesome feeling to not hear him in pain! Continuing to pray... please give us an update when you can!

Hugs - Tiffany