Sunday, August 17, 2008

No, I haven't dropped off the face of the planet....

Sorry for not posting this week, everyone. Aidan is doing pretty good. The infection he had around his g-tube and trach is clearing up now that we've gotten him on a different medicine for it. It looks 1000 times better than it did at the beginning of the week.

Aidan is still doing hyperbaric treatments and will continue through the rest of the year with them with a few 2-3 week breaks between each 40 session block. So far he's done almost 30 treatments and they've increased the pressure from 1.5-1.75 atmospheres and will go up again next week sometime to 2.0 atmospheres. The increased pressure is supposed to be more beneficial and help stimulate Aidan's body to produce more stem cells. I actually noticed a difference after the first treatment at the increased pressure.

He has been moving his arms and legs more. It's a very small movement, but he's doing it voluntarily. He's been smiling, well, grinning- more and more and he actually responded to his Nana tickling him the other night. He kind of drew in his tummy and moved his foot when she tickled him. So far we've not gotten a reaction out of him when we would do that. Sometimes he'll move his foot when you tickle it, but not anywhere else. Aidan used to be really ticklish too.

There are little tiny improvements. Other people that don't see him every day see more changes in him than I do. I am just constantly reminded how blessed we are to have him here in our lives. He is a miracle. I keep hearing about more and more children drowning and my heart just aches for those families, and it aches for what we've endured and for what we lost, even though Aidan is still here, we lost a big part of him. As close as we came to going through it ourselves, I still can't fathom the pain of having a child die.

Because Aidan has grown so much he's starting to dwarf his crib. Russell and I went yesterday to look for a "big boy" bed for him. I want to get a captain's bed (the ones with the drawers underneath) for him because they are typically higher than a regular bed. We found one and a pretty good mattress for him, so we'll probably be getting it in the next week or so.

As far as therapy equipment goes, we've gotten pretty much all of the big stuff. His stander and bath seat arrived. He has a hammock swing and his "tomato" chair. The only things he needs now are wedges and things like that so we can get him on his tummy more. I'm praying that we'll need a crawler or walker in the near (year or so) future.

We have less than 2 weeks left before the trach is to come out. I'm getting more and more nervous about it, but I am so excited to see Aidan without the trach.

Thank you everyone for the continued support and prayers. I apologize for not posting the video of the raffle drawing. The video did not turn out well. The audio and video were really off and I couldn't fix it. Again, we thank everyone who purchased tickets.

I'll leave you all with a couple pictures of Aidan. He looked so cute in his little seersucker sun suit. :)


Anonymous said...

Hi Erin.
Thanks for the update. I was wondering when you would come back! But I didnt want to bug you either.
So, this is probably a dumb question, but I will ask anyway.
If his trach is going to be removed, do you have to keep it capped all the time now to make sure its ok?
Thanks Erin.

Anonymous said...

Erin, glad to hear things are going well, I was a little concerned, but did not want to bug you guys. It is a blessing to hear that Aidan is progressing and the goal of removing the trach is growing closer.

Love and prayers sent, Scott

Erin said...

To answer your question about capping the trach, Cindy, we cap it as much as possible. Before he developed the infection, he was doing 6-8 hours capped. He started having increased secretions so we haven't capped him as much, plus he had a bit of a sinus infection which was making it hard for him to breathe through his nose. We're working on getting him capped again. We've been using the PMV as much as possible in lieu of the cap.

Anonymous said...

Hi Erin.
I just got home from church and was thinking about you. I hope everything is ok.

Unknown said...

Hi Erin,
That's great news that Aidan gets to have his trach out! My grandfather just recently had a trach put in (about a month ago) and also uses the PMV for eating and I am starting to understand how much trouble a trach can be! Just wanted to let you know that I am praying for you and your family, and especially for your continued peace as God does miracles in Aidan.

Anonymous said...

Growing restless! I hope everything is going well and that you are going to update real soon!