In December, Max started doing all sorts of wonderful things. He rolled over belly to back and back to belly, started reaching for his toys and bringing them to his mouth to eat them and drool on them, smiling all the time, interacting with his big brother and sister and just being an absolute JOY to us all!!! He occasionally rolls over a few times and ends up in a completely different spot than where I put him down on the floor. He has been so far very healthy and has only had 2 small episodes of stuffy nose at night and hasn't had a real problem during the day. His head circumference, which we get measured every month, has been staying on target on his growth charts. He weighs 13# 12oz as of his last visit before Christmas. We had an appointment here at Rainbow with an ENT, Dr. Arnold, who is the head of ENT at Rainbow and was wonderful. He said Max's ears look fine, no fluid and no infection, and that his tonsils are small to moderate in size (all good news!!). He did have a second sleep study at Rainbow on 12/18/09 to evaluate the fact that he had been sleeping with his neck significantly hyperextended. I was surprised they wanted another one but the sleep study specialist here and the geneticist at JHU thought it was necessary to make sure he is not having any central apneas. I still haven't gotten the results of that study yet (although just go the $4200 bill for it today!! Pending insurance payment luckily!!) I am praying that this study was normal like the first one that he had at 5 weeks old. He was a champ for it. So smiley while they were hooking him up. They LOVED him there! He only got up twice that night to nurse (usually he is up about 4x!) and he postured most of the night with his head hyperextended so the doctor will get a good look at why we did the study in the first place. It is a really long night though and I am glad it is over, although we will probably end up needing another one sometime in the future. Max is scheduled for a behavioral hearing test on 1/21 to make sure his hearing is ok.
We are scheduled to go back to JHU in March to meet with genetics, neurosurgery, ENT and Ortho. The ENT is the only doctor we haven't me there. We did get to meet the orthopedist, Dr. Ain, at the LPA Midwest Medical Conference in September (he has achondroplasia as does one of his daughters). Hopefully we don't need anything else from JHU any earlier than that visit in March.
Aiden is doing great! He turned 7 in December and is getting so BIG! I swear he gets taller every day! He is bummed that Christmas break is almost over and it is back to first grade again on Monday. They had a Christmas concert before the break and he did a great job singing! He was really jamming! Santa was very good to him bringing him a new bike and lots of legos. He has been building a giant city that he has up on the breakfast bar. It is quite impressive and he had put lots of time into it!
Emmi has been having a great time with the holiday. She loved everything about Christmas and Santa brought her all sorts of dolls and Barbies and the Bitty Twins from American Girl. She is at a great age for playing pretend with her dolls. She is also doing a great job of loving all over her baby brother. They will be such buddies in the future!
Let's see...what else to update you on...I will try not to go so long in the future so I don't forget a lot of stuff!
Well, bedtime for the kiddos! Good night!
3 comments:
Let me know the dates in March. Can't wait to see you. Let me know if you want to stay with us during your visit. Is the hearing test sedated? Tessa has a sedated ABR plus PE tubes this Wednesday. Her first anesthesia. Wish us luck.
Sounds like your kids had a spectacular Christmas. Happy New Year to you all! Max sounds like he is doing beautifully. It is a lot of dr. appointments at first to get some good baselines going and then as long as things go well the appointments lessen.
So glad your Christmas was so great! Sounds like the kids are having a great time! It is so much fun when babies start interacting more, I'm sure Emmi is just eating it up! Trace is having his legs straightened on March 17, so if you all happen to be at JHU during that week, let me know. Also, have the genetics counselor put you in for the Children's house, it is wonderful and just a block from the hospital.
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