Long over due

It has been a crazy month for us and without me being able to get it all down earlier I hope I can remember it all.

Well on the 3rd of November we had the care conference for Rhett. We met with 5 doctors including the cardiologist, genetic doctor, orthopedic surgeon, the pulmonologist, and the pediatrician. We also had the school district nurse, and case manager for IHC that we deal with a lot. There was a conference coordinator and us as his parents. I was thinking that we would have only talked for a half an hour since one for the doctors was available at 11 am but not available at 11:30 am. But it didn't go for only a half and hour it was a hour and a half! I was so happy that we were able to get so many thing talked about.
These doctors actually care for Rhett and want the best for him which is wonderful. They did find out that he has no signs of pulmonary hypertension while he is at rest. The pressures in his pulmonary arteries are in the normal range, the high end of normal but normal none the less. Which is great but not great at the same time. That means when ever he exercises of himself in any sort of way, example: walking up stairs, walking through the school, walking at all will elevate his pressures. More so than it would be of a normal person. He is unable to get off oxygen ever where we are at. They would like for us to be able to check him at sea level to see if he can come off of oxygen there. Well that is something to think about. I think it is time that I look into visiting my sister with Rhett and that way I will be able to check Rhett and get more info for the doctors and us. There is no reason that he turns blue even on oxygen but he does. He is still growing as far as the doctors can see, but they are going to keep a close eye on him. There is nothing more that the doctors can do for him that they are already not doing. They suggest that we keep the surgeries going and more tests so that way they can make sure everything is helping him. Which is a sign of relief so that the doctors will have more info to be able to help them with Rhett's care plan. They believe that the surgeries are helping him but I am not so sure. The prognosis of Rhett is still unknown, but there is a chance that he might be able to live with what he has for a while. I am still not sure if I believe them. Rhett has had his hearing aid fixed finally and was way excited to get it back. He is doing well in school. The PE people with the district have been out to see if that can help with Rhett's PE time. They have rigged something up for him to be able to have PE and be free to move without being tethered. He is so excited, but we are still looking at it to make sure it will not hurt him.

Nikole is doing well. She has been told that if she does he homework on time then she will be able to stay in the after school program since she loves that so much. She is still learning that throwing fits is not acceptable. Lucky for me it only happens every other day. LOL! Ok maybe less than that but still, it is frustrating. She is very smart and is shows often. She is great help when she wants to be. Lucky for me she doesn't need to see the cardiologist for another 2 year if I remember right. :) She did have 2 small cavities and had them taken care of at the dentist. She was a super brave girl and held really still and handled it better than some adults. She is getting her homework done more on time than she used to which is GREAT!!! I am so happy that she is doing that much better.

Gavin is doing great in school and even at home he is helping more. He loves playing with Dylan and it is great to see them play so nicely together. There are sometimes that he does pick a fight with his siblings but most of the time it is provoked. :( We have been working on earning game time as a reward to good behavior. Sometimes it works and other times it doesn't work. He is very smart and loves doing homework! I know can you believe it??? Well he does! He loves coming home on Monday and doing it almost all in one day and then he asks me if he had earn game time. :) LOL! Can't see where his mind is huh? We read almost every night before bed. We do read a lot during the weekend. At least a few hours every day Friday, Saturday and Sunday each. He loves going to church and being reverent and kind towards people in church which I have waited for forever. LOL! Ok not really forever but for a very long time.

Dylan is doing well and loves learning. He is signing more which is great!! It is nice to be able to communicate with him more. He has had several ear infections and is dealing with one now which makes me sad to see him suffer. We are suppose to see the ENT but heck he is all booked up for a very long time. I guess we will have to wait and see. Poor kid he seems to have a knack for getting in trouble and also to hurting himself. He is going to be 3 in a month and a half I cannot believe it!! The doctors are fighting for synagis for him. Which are shots to help prevent RSV from being very severe. I pray that the insurance will cover the shots and approve them for him. It would be a whole heck of a lot cheaper than a hospital visit.

I need to tell Les that I am ever so grateful for her and the help that she has giving me. She is such a wonderful woman who is one of the greatest of friends. Yes I am getting to bed earlier thanks to Les!! :) I will be able to update more often thanks ot Les also! So happy!!! :D