Endocrinology results

Well Scott saw the endocrinologist and they did some tests and examined him. Well the bone age test showed that Scott's bone age is very severely delayed and that his bone age is that of a newborn. I was pretty upset when I found this out but the endocrinology nurse practitioner said that it is not necessarily a bad thing because it just gives him longer to grow. My concern was that if it still said he is a newborn then are his bones growing at all and she said yes they are but they are just delayed and they would like to see him back in like 4 to 6 months to recheck this so they know at what rate his bones are aging at and they can get a better idea at what is going on. Well I understand that there is a process and things have to be done a certain way it's just crazy because as a mom I wanna know what's wrong and what can be done now. Also I spoke with her and she said that his growth hormones are at normal levels. They are at the very low end of normal but they are still within normal range. Also he is in the 5th percentile for his weight for height but he is still off the chart for his weight and length both for his age. I asked her if in her medical opinion it would be a good idea to get a sweat test to check for cystic fibrosis since the main sign of that is poor weight gain and being small and she said absolutely. As long as we are ruling everything else out we might as well rule that out too. It is scary to think of but I just keep telling myself they are just ruling it out so we know that is not the reason for Scott's problems with the weight gain and growing and all that. The endocrinologist said she wants Scott tested for celiac's disease so we can find out if he is allergic to gluten and wheat because with all of his other allergies it is possible is allergic to that also. That would mean that he would be allergic to the gluten as well as the milk, soy, eggs, nuts, fish, and shellfish. I am going to start posting on here Scott's recipes that I find so if other people have children allergic to a lot of stuff we can share our successful recipes and hope to help each other out. Also we are being referred to a gastroenterologist to make sure that everything is ok in that department also. We just wanna make sure everything is ok and it is just that Scott is small or a "late bloomer". On my SO's side of the family I'm pretty sure they were all late bloomers. I know Brandon's 3rd grade teacher (weird I know) and she said Brandon (who is my fiance and Scott's dad) that Brandon was always the short skinny little boy in the class and she recently saw him and she could not believe that Brandon is over 6 feet tall haha. Also I know both of his brothers all the sudden just kinda sprouted up outta know where and they were always small when they were younger and then just kinda shot up. Hopefully this is what is going to happen with Scott it is just crazy to hear all the comments I get from people. I had one lady say how sweet and adorable my son was and then asked how old he was and I said he is almost a year and a half and she said oh my what is wrong with him. I understand she may not have meant it the way it sounded it was just kinda aggravating because I get this a lot. Plus the fact the my son is 17 months old and is only 15 lbs. 10 oz. and is still in 6 to 9 month clothing. Well I will let everyone know what the gastroenterologist says and I will let you know what happens. Thanks for the support and let's all just pray it is the "late bloomer" deal!!

Good News/ Crazy News

Well before I get to the crazy stuff, I would like to say that we do have good news and crazy news. We have found out that for Scott's age he is advanced in problem solving. He is doing things that he should not be doing for a few months still and is showing he is very intelligent. Scott knows how to figure things out so he can do what he wants to do without my or Brandon's help. For example; Scott LOVES to play with his walking toys. He will push them all around the house and use his walking toys to get to places and things that he wants to play with since he still is not walking alone without holding on to someone or something or cruising. If Scott hits what I call a "road block" he will go to the front of the walking toy push it backwards and turn it and go back behind it and start pushing it so that he can continue on his little adventure to get into whatever he is going after. I was very excited to find out that this is advanced as it does get old hearing about what he is behind in. I love my son very dearly it's just frustrating that doctors won't just let him be himself they want him to be like every other child out there and that is just not how Scott is. So that is my good, well awesome news.

Now for the crazy news. We took Scott to see an allergist because they wanted to be sure that since he is so sensitive to milk and soy that there isn't any other foods that Scott is allergic to because we do not want him having a serious reaction. Well they tested him for a total of 17 different things including a few indoor allergens and it was a total of 19 scratches on his back since they needed to know a positive and negative reaction and how it would look on his specific test. Well it came back that unfortunately Scott is allergic to Milk, Soy, Eggs, Nuts, Fish, and Shellfish. Also as far as the indoor allergies go Scott is also allergic to dust and dogs. Since we have two dogs I was very nervous that we would need to find a new home for the dogs. Well good news is that it is a very mild reaction and as long as we keep up with vacuuming and keeping the dogs very well groomed and also get a HEPA air filter for both Scott's room and the main living room area we should be fine. The only downside is that these filters are not cheap so getting them right away is out of the question so we are saving for them and should be able to get them in the next few weeks. Also they suggested keeping the number of stuffed animals in Scott's room down to a minimum since these too collect dust mites which grow off of dead skin cells. So we are in the process of packing up a lot of Scott's stuffed animals since he has like a million of them and keeping them in vacuum sealed bags so they will stay nice and we can show Scott all of the little buddies people bought him while he was in the NICU to help him get better and stronger for when he came home with us. Lastly the doctor suggested keeping the dogs out of Scott's room to keep the pet dander down but since we have already taught them not to go in Scott's room since we moved here that was easy enough for us.

So now the adventurous part that everyone can help in. We are trying to put together a special cook book for foods for Scott. It can be any kind of food whether it is something that he will eat now or something he can eat once he gets a little bit older we are trying to collect some dairy free, soy, free, egg free, nut free, fish and shellfish free recipes. If you have any recipes for us please e-mail them to me at hollypalmer1@aol.com with your name and where you are from and we will put them in Scott's cookbook and show him how many people have helped us and supported us through everything. It will be greatly appreciated and I think it would be nice to show him when he gets older how many people care about him and helped us all out.

I also do have a special request this time. I follow a blog for a little girl who is only 10 months old and has been through so much. Her name is Kayleigh Anne Freeman. I have mentioned her and her family before in previous posts I do believe but I really am asking for some help this time around. This poor little girl had a few surgical procedures done recently so that she could finally go home to her family from the NICU after being there for 10 months. Unfortunately something went terribly wrong during the procedure and she is now brain dead. I am asking for you all to read her blog and her story and please just keep her in your prayers. This family is not only going through this terrible tragedy with their daughter but they have already lost one of their cars and are facing foreclosure and losing their second car which gets them to the hospital to see their sweet angel. They have to other children at home and are struggling to keep their realty business their health insurance and everything up so they still have some kind of income in this time of economical crisis. Please help pray for this family and if at all possible even just $5 will help if you can donate to this amazing family. They are some of the strongest people I have ever met and are just plain amazing. Please at least just keep this little miracle from God in your prayers!! You can check our the story here of this little girl who was born at just 28 weeks and doctors said she would never even make it this far but now she is 10 months old and fighting for her life. Please pray for this family!! http://www.kayleighannefreeman.blogspot.com/

Thanks again and God Bless

Holly

Geneticist

Well we had Scott's genetics appointment. Everything went well. She took some measurements like the trunk to crown and she measured his finger for some reason. They said it could take up to 5 weeks to get all the tests back. They did tell us though that if anything comes back abnormal they will notify us immediately otherwise no news is good news and we will just have to wait it out. Well sorry it took so long to post this. His appointment was the 3rd and I am just now posting but I have been super busy and Scott has been a handful lately. Everything else is going ok. Well just please keep us in your prayers and hope they figure out what is going on and hope it is nothing too bad. Well thanks for all your support and prayers. They are much needed and much appreciated.