Thursday, August 14, 2014

Cleaning his grill

No, not this kind of grill...

THIS kind of grill!


That's right. William went to the dentist for the first time on Wednesday! He had some stains on his teeth due to iron (not sure why), but it was bothering me and I wanted to get his teeth cleaned and make sure it wasn't anything serious to be concerned about. Neither of his brothers had any stains on their teeth so I thought it was curious. Anyway, the pediatric dentist where we went is just down the road from my house (very convenient!!!) and is decorated like the beach. So cute! Thomas used his lunch break from work to meet me and help out, although in hindsight this would have been totally manageable by myself. Stokes and Ryan stayed in the stroller the whole time. It was a piece of cake!

First trip to the dentist!

Waiting Room

Thomas, Ryan and Stokes

William and me

William, just lounging in his beach chair




On to the cleaning!
Our hygienist, Stephanie, had a baby boy born at Greenville Memorial just a few hours after our boys were born. His birthday is technically the next day though. It was cool for us to realize that we were at the hospital with our new babies at the same time.
I told Stephanie that we were going to take pictures and blog about this appointment and she went and got some sunglasses for William to wear. So funny! William did great, by the way!




Then the dentist came and checked him out and did a little cleaning, too!



Sweet brothers were so patient during the appointment and didn't make a peep!

Is that a mischievous look on Stokes's face, or what?!?!

All done! What a champ. I was so proud of my big guy.

 
Other appointments this week:
 
Tuesday we went back for a follow up at the Developmental Clinic. This was our 3rd appointment since being discharged from the NICU. They all got good reports. Stokes especially is doing well! We voiced our concerns about Ryan's issues and our nurse was already up to speed on most of that info from reading our report before the appointment. We did get updated weights for each of the babies!
 
Stokes - 18 lbs
Ryan - 20 lbs
William - 22 lbs
 
We had the dentist appointment on Wednesday.
 
Then today (Thursday), Ryan went back to Neurology for another follow-up EEG. I probably haven't been updating very well about this round of ACTH medication, but since he got back on it on July 3rd, we've been continuing with weekly EEGs to see his brain's progression in regards to normal brain waves. He's been doing well and getting better each week, which has allowed us to slowly taper his dosage down. We started at .3ml twice daily, then went to .15ml twice daily, then down to .1ml twice daily and to .1ml twice a day every other day. Our neurologist is intentionally doing a slower wean of the ACTH this go round in the hopes that this one will "reset his brain" (her terms) so that he won't have any more spasms. I pray every night that this will be the case for my beautiful Ryan. As we've been weaning down the medicine, we can see our wonderful baby coming back. On the medicine, he's pretty much zoned out. There's no eye contact, little movement, no interaction and so on. After a while, I started to get really down about it and right when I felt like I was going to hit the breaking point, I noticed a little change. I saw Ryan give me a very faint smile about a week ago. Since then, while he's on such a small amount of medicine, he's continually gotten more and more out of his fog. Now he's smiling, laughing, tracking, kicking, moving and watching. Thomas and I got our baby back! I love it! He got a good report on his EEG today. Our neuro says that the EEGs continue to look better and better. There were still a few spikes, which isn't a good thing, but overall it still looked better. We are going to continue doing his ACTH for another week at .1ml twice daily every other day and then as long as all is well, we will stop the injections and move to an oral steroid called Prednisolone. The plan is that we will do that medication for about 4 weeks with a slow wean. Our next EEG is in 2 weeks and then 2 weeks later we will see an Epileptologist (Epilepsy specialist) that is just starting at the same Neurology practice. I know I ask this a lot, but please continue to send up lots of prayers for Ryan that he can kick this Infantile Spasms thing for good and get on a good developmental track!
 
We had quite a few appointments and updates for you this week and next week will be busy, too. It's crazy time with the Peery triplets! I'm so glad that I have these 3 amazing miracles to keep me entertained and busy!


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