I have been waiting to post on our page for information on Simons titers and other things that have been in waiting. We have gotton, for the most part, all of our titer labs back and he has shown antibodies to most of the immunizations he received. This is great and it shows his immune system is responding to them and making powerful cells to fight against that disease in the future. We will not be getting another dose of iv pentamadine for pneunomia prevention and will mostly be going into clinic to flush Simons venus port (which still requires a poke) once a month. He continues to ask me when and how the doctors can remove the port and the G-tube 1-2 times weekly. I am working with GI doc to slowly lower steroid doses and hoping to at least get him down to 2-3 mls with the hope he will still maintain low or no inflammation of the gut and we can just hope he outgrows the dose and stays stable.
It is hard to believe he has only 7 more days of pre-k 3 left. I feel like I just enrolled him into the program and he is already finishing up his first real year of school. Its amazing. He will turn 4 in August. It has been a long haul and its not over but we feel very good about where he is right now. He is Mr. social, likes everyone and loves to play with everyone and he is well liked by all his peers and even older kids who are the girls friends and their siblings. He attracts kids and just makes up games and they all play. Its amazing to watch. He speaks to us like the mind of a 15 year old and tells us how amazing we are. In all of his young years on earth he has seen and endured more than most do in a lifetime and it has made him wise beyond his little years. One of his favorite things to do is go to the girls t-balls games, he of course has to wear full uniform to be the team mascot, and he plays with all the older boys there with his animated skits and plays. We are blessed, we are happy and we will hope to make the most of the summer. We will be heading to Georgia after school is out for a much needed rest and some family time with Daves brothers family so hoping for safe journeys and to be posting just happy times and photos here. Keep praying for his complete healing and for his gut to continue to stay at a calm place now and forever. Thanks and God Bless.
We are rid of the red, welting, painful rash and now seeing some target lesions appear. He used to get them all the time. One frustation with the skin is noone can tell us what it is. At least he is not feeling pain all over anymore. We spent the day at Childrens getting what could possibly be our last pentamadine iv infusion. We drew titers today to see how solid the immunizations we gave him are holding up and how his immune system is responding to having an effective antibody to defend him. He is in good spirits and feeling preety good, always fiesty. He is playing soccer and really getting into playing ball with the girls and being at their t-ball games. He loves sports.
I have his IEP meeting tomorrow at school to make sure the choices for next year are solid and he is followed and well taken care of going forward where his education is concerned. He is being transferred out of our school to another school as they feel his academic level exceeds what the Early Childhood class is offering him right now. So its good but the class is smaller than the one he will go to and that mean more germs and things to worry about. He has been out 65 days of school this year. Thats alot. Some of it b/c other kids were sick and we stayed home just to be safe and other times b/c I was being cautious. Its hard not to know from day to day what to be able to plan. I need to make sure the school is working hard on being able to supply him with a cool enough environment when he returns for kindergarten as right now the school is very very hot in alot of the rooms and simons inability to sweat he would never be able to be in the rooms and learn without worrying about him overheating to a serious level. Its a very huge concern for us. I am working with the NFED to supply myself with the knowledge I need to make sure everything is done to help get him what he needs to be comfortable and be able to learn like everyone else.
Please pray we never see that skin erupt again and that he does show great numbers to the immunizations. We also ask for special prayers to our NEMO friend in Indiana who has suffered alot as well and is battling upper repiratiory infections and fevers. Please pray they find out why and its nothing serious. God Bless you all Love Tracy
Well I've gone from elated to deflated. Simon had his appt. a week ago Monday and he received immunizations, pentamadine and alot of bloodwork to follow up on our immune studies. Everything came back pretty good especially his vntrs which were 99% Marrianas cells. We were so happy. He has been doing so well. Regular stools 1-2 times a day, eating, happy, although a bit aggressive with the steroid use. A few days ago he have a few bumps on him that I sorda blew off but wondered about. Yesterday I sent him to school and received a call a little while later he had broken out into a full blown rash. After picking him up, making calls to his dermatology team and his stem cell team, e mailing photos and talking with them we thought it might be viral. This morning I know better. He is covered in a blanket red rash, hot to the touch and hurts him to walk. He used to get this alot early on in the transplant process and before. We were always told it was his mutation and the bad NEMO. Well its rearing its ugly head full powered. My heart is saddened by all of this. I honestly felt we were past it, moving on. I hate seeing him like this. He is puffy and red and in pain. This is not something you can fix with a lotion or meds, it runs it course and its usually not a good run. He will suffer, peel and we will be left to wonder why its back and what it all means. I feel that we do not know anything more than we knew 3 1/2 years ago about this disease and how it all processes and how it turns out. I can pray to God that he really is doing better and his immune system is fighting hard to get rid of this. What we all worry about is that it will aggrevate the GI stuff and we will be in a tailspin of all that again. Please pray for a healing and restful weekend for us. I tossed and turned last night trying to figure out what was different in his diet, his day to day and all I could come up with are the immunizations. I think too many at one time, or he is reacting to the MMR which he never received before. I don't know but it scares me and when I can't figure things out I am in constant mode of research, which is not always good. Please pray for fast healing.
Our Isabel was in her school spelling bee yesterday and we are so very proud of her. She did awesome. Was brave, lasted 6-7 rounds and was a trooper when she misspelled a word. All the kids did wonderful. Congrats to our spelling star.
Thanks for checking in. Keep us in prayer and lift Simon up and heal him. God Bless. Tracy
Hello everyone. First I want to say thanks for the messages. It is so nice to see them and know you are still cheering for us here. I know its been a long road and while I don't talk to alot of people as much as I used to you all are dear to my heart.
Simon is doing ok. He has had some skin issues reoccur starting last sunday with a fever. It lasted one day but the rash is still hanging around and he is itching like crazy. We saw our wonderful derm on Tuesday and he seems to think it was brought on by a virus but that it is his NEMO mutation that is playing a role in the target lesions he is having again. This makes me nervous as well as our doctors. It is put out there some worry about his immune system. I am wondering, but yet hoping otherwise, that the TNF blockers that he was on for his GI system were helping his skin stay healthy. The TNF proteins are those that help the immune system to work in good ways but when you have too many it creates things like constant diarrhea or autoimmune like response in your body which triggers things like the skin. So since we took simon off the the weekly shots, due to them not really helping his gi issues, his skin has reacted. I wonder if there will be a time when there is no worry about if the immune system is up and functioning to the capacity that it should be. The "wait and see" is always the hardest. His gi system is acting up a bit as well. He is complaining of tummy aches after eating meals, not snaks, and his stool output has increased. Its so hard to plan for the future for him when the day to day is so complex sometimes. So I will try to get more smaller meals in him. His weight bouced back and he is doing ok with that for now. He still is a skinny boy.
On the good side, Simons parent conf. went well but they feel he has outgrown the Early Childhood program and are recommending he be placed in a setting that is up to speed with his constant changing mind. I was told he is "kindergarten ready" now and they feel he needs more peer interaction so we will be visiting another program on Friday to meet the teacher and see the classroom. This is exciting but also I worry as there are 20 kids in the class, which means more germs. So I pray by next fall we can be in a better place with that as well.
We all were able to celebrate Marrianas Star as she was student of the week in her class and Isabel and Simon and myself shared facts about her and read the class one of Mars favorite books. It was nice. She was glowing and I just wish Isabels class did the same. Its hard to have the same age girls and one experiences this and the other does not. So we made a star poster of Isabel to hang at home. We try and hope its enough.
Well enjoy the weekend. Stay warm as it seems winter has reared its ugly head again here. God Bless. Tracy
