Butterfly House

I never got around to blogging about this, but a few weeks back we needed to see the orthopedic doc. I set it up so we could go to Dallas for the appointment because I wanted to take Dakin to the Butterfly House at Discovery Gardens.

It was amazing, but incredibly hot and humid--even more humid than outside, but that's because they're tropical butterflies. It's a beautiful setup--you start one story up and walk down along a long ramp to a picturesque garden-type setting. We got there just in time to watch them releasing the new butteflies. These ones here are blue morphos--they're HUGE and their wings are this entrancing blue. I wish they would have opened their wings for the picture... Dakin enjoyed seeing the butterflies flit around for a little while, but he started sweating pretty quickly. It was just too much in there. We're going to try to go back in October.

Night Night

These are just some recent pics of Dakin at bedtime...I think they're kind of fun. This first one is pretty self-explanatory, but Dakin likes to have a sticker at bedtime to play with. I had lost track of where he had this one, but found it, as you can see. I have no idea how it got there. Dakin just loves his markers.

Sunshine and Rainbows

Our Children's House at Baylor (where we have vent clinic)

That was yesterday...vent clinic again and it went great! We first went over to Medical City to visit the ENT--you may remember that Dakin has been having some problems with random desatting (for the happily uninitiated, that means the oxygen levels in his blood are going down) just as he falling asleep, but none during the day, so Dr. G (pulmonologist) wanted us to visit him to see what he thought.

Then we headed over to Genghis Grill for Dada's birthday lunch. We were first in the restaurant, so we had plenty of room for Dakin and his chair. He even had a few bites of noodle!

On to vent clinic and all the usual--x-ray, leech lady coming to take blood, visit with the amazing outpatient case manager and nutritionist. This time was special, though, because we had a visit from Dr. R, who is a physical therapy doctor. We have been wanting to discuss a bowel regimen so we could get on the path to potty training this boy...she is going to work on it for us to see how we should get started.

Dakin didn't gain as much as he should have the last three months, which was kind of a shock to me as he seems to be eating so much more now. In talking it over with the nutritionist, we don't think it's so much that he's not eating enough, but more that he's moving more now, so we need to really work on upping his intake, which is hard with a kid who just. won't. eat. sometimes, but we'll get there.

Ok, now for the exciting stuff: pulmonologist and entourage enter. Dr. G thinks the desatting is due to the HUMONGOUS leak Dakin has around his trach (the reason he can talk), and has ordered an upsize trach for him-Dr. G thinks we have enough room in Dakin's stoma to get it in on our own at home (YAY!!!!!!! I was so worried he would have to do surgery to enlarge his stoma!!!).

So the upsize should solve the desatting problem. We also get to drop Dakin's atrovent (one of his breathing meds) and go to twice daily treatments instead of three daily! And instead of just popping him on the oxygen when he gets to 91% O2 saturation, we can wait until 88 and see if he can pull himself up.

He also said Dakin looks great and that we do a phenomenal job with him (that's the sunshine and rainbows--my job is justified every day by the smile on my boy's face, but to hear a doc tell you you're doing a good job is icing on the cake).

Soooo...sorry about the long post with the technical jargon. It was just a good day!

Mo Eee

Happy 4th, everyone!

Tonight we watched the Macy's Fireworks. Dakin was interested at first, but then decided it was more fun to try and poke me in the face with the back scratcher. Ah well.

He did get a sentence out, though. He decided he wanted more green fireworks, so for the last 10 minutes or so of it it was 'mo eee.' I explained to him that I couldn't make them do more green ones, but to no avail, as usual. :)

Out of the Mouths...

A few weeks ago we started teaching Dakin to pray. This is one of his favorite activities in the evening now, and he will remind us if we don't do it.

Here's how the conversation usually goes:

Dada: What do you want to pray for?
Dakin: Mama, Dada.
Dada: What else?
Dakin: (raising arm to point to self) Me!
Dada: Anything else?
Dakin: Me me me me me me. (Giggling)
Dada: Ok. Fold arms.

Dakin folds his arms at this point but will fling them out as soon as he can, laughing and watching us for a reaction. He has started refolding, though. At the end he'll say 'ah-mee'. He'll say it in church too--it's pretty cute.

Anyway. He used to pray about Rocket and Mickey and green and blue and brown, but he's just sticking with Mama, Dada and himself now. I need to record the 'me me me'--it's hilarious.

Yep. That's My Kid.

New talent.

Powerchair Progress

What are they doing to this poor child? They're fitting him for a molded seat for his power chair, that's what!! If you remember, our journey with the power chair began in October, when we got his loaner to try out. The paperwork was submitted in December, and was FINALLY approved a few weeks ago (there were some issues with our insurance and then we had to jump through some Medicaid hoops).

On Thursday the wheelchair people came out and got the seat aspect of it going. They sat him on these beanbags and the two PTs wrestled with him to get his spine as straight as possible. Then they sucked the air out, chalked up the form and recorded it in a laptop. It was emailed to the company and we will have a mockup hopefully in 2 weeks. If all goes according to plan, we will have Dakin's chair at the end of July!!

He finally decided he wants a nice cherry red on the frame (Dada says it's a hot rod red :) ).