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Its been a while but wanted to come by and try to get back to posting more regular like.
I'll start with a few updates, on all my kids starting with joey.
Joey is now 3 yrs old, he is 15 months post bone marrow transplant TODAY. His GVHD is GONE. However we are now dealing with some long term effects.
To start, Joey has stopped growing. Now there is some chance that as he comes off the steroids he will start again on his own. We are waiting to hear the results of his bone age test to see if because hes been on high dose steroids his bone age is lower than his actual age. Another possible issue could be he may have stopped producing growth hormone. Regardless of the cause, it is something we are monitoring and trying to get an answer to. He just went down to 10 mg of prednisone a day (we have been as high as 60 mg a day so this is HUGE). My little (former) string bean is now 40 lbs. But his appetite is finally curbing as the steroids keep dropping so I expect we will see some weight loss in the near future. Now if I could get him eating more than a small selection of foods!
Also with Joey are his lungs. While there is no visible damage on scans, the suspicious in there is some mild damage which explains why it takes him sooo much longer to heal from a respiratory bug than any other bugs. All minor in comparison. He has lost his nails or is loosing what remains. This is likely due to the GVHD that attacked his nail beds. His bones are osteopenic but we are increasing his calcium and Vit D to help combat that, with consideration into using some meds to help strengthen his bones. he's being evaluated for speech services and has his final IEP meeting next Friday I believe. The school sure drug it out though! I think the only major issue remaining with joey is he is terrified of people. Someone so much as says hi to him, even my dad, and he panics.
As for Melanie, overall she is ok. We tried putting her in public school for speech services, however due to issues at the school we ended up pulling her out and are back to homeschooling her. My once social butterfly is afraid of people because her classmates would HURT her for writing with a different hand than them. She went from loving people, and always talking to everyone to hiding behind me when someone is near. Otherwise she is doing well. We have to have her evaluated for a few things as well because my sister has been diagnosed with a genetic disease and my kids do have some markers so we'd rather KNOW than not know. I don't think they have this disease, but well... again I would rather KNOW.
As for David, hes playing Basketball now. I am having him evaluated because there is concern about his excessive height. He's 9 years old and 5'8", skinny as a rail, and his feet are huge (size 11 mens). Joey's oncologist told me he really wants David seen for this, because it could be something that needs attention. David does not know his height is a concern and I am keeping it that way at this time.
Thanks for sharing these updates. Hope all the growth issues get figured out soon for all your kids. Praying for Joey' s lungs and appetite. (We're dealing with similar issues with Ellie right now) Also praying that anxieties will ease for EVERYONE in your family. (also something we are very familiar with)
It is good to see you here again! I am glad you little one is getting better. I will pray also that the growth and anxiety issues are all straightened out. It is heartbreaking that your daughter went through that! That is terrible! I will definitely pray that her spirit can be healed and she will once again be your social butterfly. KUP on the genetics testing!