It's been awhile since I have posted. It has been a busy, long winter! The last few months have been busy....or maybe it's just the boys keep me so busy....OR it's probably a combination of both. And of course, Levi is still working A LOT of hours!
Gavin--Gavin has been doing very well in school. He is quite the sponge, just soakin it all in! Gavin and Jace are now done with Taekwondo. I was a bit torn because I wanted Gavin to continue, but it was a huge commitment. It was just getting to be too much to have Taekwondo be part of our schedule. Shortly before the boys were done with Taekwondo, Master Winkler visited Gavin's class/school. Gavin was able to break a board in front of his class/school. He was thrilled about that. We were very proud of him! Gavin has been enjoying his DS that he got for Christmas. He has also been enjoying the wii. He loves to play games with Levi. Not much to update on Gavin. He just recently had an allergist appointment. His allergist would like us to continue the action plan that we are have in place. Other than that, Gavin is eagerly waiting for his birthday AND to lose a tooth! He has no wiggleys yet!
Jace--Jace...where to begin?? It's been a very challenging past few months with Jace. Every day I am trying to figure him. In January, he started up OT again at Pediatric Therapy. Because our insurance only allows 50 combined visits per year, Jace is only doing OT and Speech every other week. It's a bummer, because he could definitely use the therapy every week, especially OT. We have implemented a few new things with Jace. One big thing, was that we split him and Gavin up. Jace got his own room. His own space...his own mess! This has helped with a variety of things, so it was good change. We also have Jace doing indoor swinging (this helps cut down on the rocking). He LOVES to swing. He is on that swing several hours a day! We have also been trying the brushing technique. Jace likes it and is relaxed at the time of brushing, but I'm not sure if it is really helping him. Over the past few months, Jace seems to be very anxious, bouncing off the walls. He is constantly moving from the time he gets up in the morning until he goes to bed at night, with NO down time. He will go through rough patches here and there. During these times, on top of what I have mentioned, he regresses back to toddler age. He has a lot of toddler behavior. He becomes very defiant at times. Sometimes, it can be something so little (at least to us) that can set Jace off for days. It can be very frustrating. He went through a very rough few days, just recently. It was over about 4 days and he escalates as time goes on. There were a few days that he was so all over the place, he just didn't seem himself. I have a call into his doctor...hopefully will hear something this coming week. I also have an appointment for him with the Development and Behavior Doctor up at Children's in April (that was the earliest we could get in). I just really feel that there is more to Jace. I know some people don't understand, heck I don't even understand all the time. But I think some just don't get it, but when you deal with it on a daily basis...I think one knows their child. There is just more to Jace than we know...he does not act like a normal 4 year old. I can go on and on about Jace, but I want to try to get this whole update publish soon. I may blog about Jace in a future post. Jace will also see the sleep specialist up at Children's at the end of this month. We had been doing melatonin with him, but the last handful of nights we haven't been giving it to him and his has been sleeping through the night...go figure! Wonder how long it will last?
Kai--Kai...he's had a handful of appointments over the past few months and has a handful more in the next month or so. He visited Dr. Moore (Development and Behavior doc) in Dec. I think he was impressed on how well he was doing. During this visit, Kai got to walk down the hallway to his genetics doc's office to show off his walking skills to her. I think she was impressed as well. After all, from an orthopedic stand point, Kai wasn't going to walk. He is now walking 100% of the time. This is exciting and yet it makes me nervous. This has opened up a "new can of worms". Due to his joint issues, Kai does not have great alignment, nor that great of stability. His joints can give out on him at any given time and without warning. This is not fun, when he falls a lot. For awhile there, he had bruise on his forehead that I was calling "a permanent bruise". He always had a bruise there. As soon as the one bruise go away, a new one would appear. He recently has been remolded for SMO's (leg braces). Without these braces, Kai basically walks on his ankles. He will get his new braces on the 15th. His PT from school joined us for his appointment at Gillette with the Rehibilitation doctor. She wrote up a nice email about Kai's appointment and reminders to those who work with Kai. I asked her if I could share her email on my blog, so I will post that separately. I thought it was very well written. Kai's eye appointment went well. He goes back in 6 months. Kai's dentist appointment went better than I had expected. She stressed that we really need to be very good about brushing his teeth. She explained that if Kai were to a cavity, he would need to go to the hospital to have it taken care of. Not all of Kai's teeth are in, but he is going to have some issues with his teeth that will need to be addressed in the future. Kai also had a feeding clinic appointment just recently. He is weighing in at 21 lbs 1 oz and is 30 7/8 inches tall. He is in the less than 3% for both. So he has finally made it over 20 lbs! About 3 weeks ago, we bumped Kai up to 30 kcal for his formula and have decreased the quantity by a little. He is still doing the 4 bolus feedings during the day, but for now we have cut the overnight feeding out. He is taking more liquids orally. So we have added 6 ounces of the yogurt drinks to his daily diet plan to help add calories. I will probably do a separate post about the rest of his feeding stuff. Even though Kai has gained some weight, he is STILL in size 2 diapers! He is still in 18 month clothes as well (he is now 29 months). Kai is talking more. He says quite a few words and he also says some phrases. One of his favorite phrases..."I want down" (that's usually during a tube feeding). A few of his favorite words are "Otoodles" (from Mickey Mouse), "Move" (loves to tell this to his brothers) and just recently..."what?". He is an amazing kid, with normal toddler attitude!
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