Thursday, June 18, 2015
Updates
So after five months of waiting for results from KeKoa's genetic doctors, I called Monday and finally got some answers that I still have so many mixed emotions! I have been calling the genetic department every week for the last month and have had no calls in return. I began to give up, thinking maybe they were just blowing me off like everyone else had seem to be doing! So I got the call and to be quite honest I was just expecting them to tell me everything came back normal so they dont know what to do from here because I have had other people tell me oh its just autism or my kid had the same issues and its just autism. Now I can not speak for them but I know that in my heart I knew this was not the case with him and I have always felt like in my heart that there was more going on with Koa than just autism. So leading up to this, I was at this autism retreat a couple of weeks ago and I kept getting this feeling that the lord was using Koa to prepare us for a harder special needs child which I thought to myself no your just scared and then I had a dream two nights in a row of me talking for our little boy who is in a wheel chair, which who is to say that is not Koa! All I know is that I felt peace after I had this dream the second night in a row and I read my blessing which states the lord will prepare you for the special spirits he will send to your home, what a beautiful promise and I know that the lord has a plan for my beautiful family! When I spoke to the genetics Doctor my heart was pounding and she began to tell me that she was shocked they found what they found because normally with genetic testing everything is black or white not grey! They found that he was missing parts of the X chromosome on the long side, well yes that was a foreign language to me! She went on telling me that the Y chromosome comes from dad and there was nothing wrong there but the X comes from me and so they have to test me to see if it comes from me and if it does how will it affect my other children! If it does not come from me, then we have a long road ahead of us with Koa, she began to explain to me that this is very very rare and that they have not seen anything like this before, they are in an unknown area. Some of the chromosomes he is missing do not affect the brain which clearly his brain has been effected and that there are mutated genes and BLAH she kept explaining things to me and honestly all I could think about was do I carry this! My heart hurt thinking did I do this to him and what about having other kids, Ive always seen us having a big family but maybe its not in the cards and how am I suppose to feel what am I suppose to do and I became numb! They told me about Duchenne Muscular Dystrophy which he may have it has to do with missing part of his x chromosome. So what I have read about it, its very rare 1 out 3,600 males get it and it has to do with there muscles in there whole body, it affects their stomachs and everything and most of them are in a wheel chair before the age of 10! We will know more after muscle biopsy and she told me that they may have to document things as he grows just cause they dont know what there dealing with or what is going to happen. I feel like I have handled it pretty well, when I told Josh he was so so sweet asking me if I was ok and making me know that nothing is my fault and that we know Koa knew what he was going to go through before he came to this earth. I honestly dont know where I would be with out him, I find my self randomly crying because of emotions that I dont even know what Im feeling. We went to the temple last night and I have never felt so much peace, I know the lord knows my heart and he is here holding my hand through all of this! Today we found out that Koa has to get glasses and I am nervous cause he hates when people touch his face, he wont wear hat or clothes for that matter! They told me his vision is pretty bad which that's why he sits close to the tv, or why he rubs his eyes all the time and could cause some of his melt downs and cause him not be able to hold his head up but she also suggested getting his equilibrium tested. I thought great so much more to add to my list and then I felt the holy ghost whisper to me Car be grateful you have him and he has so much to teach you and your family! Im grateful for tender mercies from my savior on a daily basis. I decided today that instead of always getting frustrated and thinking of ahh one more thing to add to my list that it was time to live in the now and enjoy it! Im letting the lord control my life from now and if he wants me to have more children regardless if I'm the carrier or not I will! Josh and I are privileged to have children and we thank the lord for them every day special needs or not they are all gods children; they have more to teach us I think then sometimes we do them! If I have another special needs child we will be the ones who will be so lucky to have them and so will our children yes Im crazy but even knowing how hard they are to raise I feel the spirit in our home all the time, I can not put into words how my heart feels about this matter but I would love as many children as the lord has to bless my family with. Im grateful the lord knows what he is doing! My heart is so full and I feel the lord strengthening my faith each and everyday! I do not know KeKoa's outcome or what is instore but I do know with the help of my savior and my wonderful husband that we will enjoy the journey we have ahead of us. I failed to mention how amazing my other two children are I know that my little Jayla and Kai were prepared in heaven to help Koa, they amaze me each and every day! Jayla is so loving and kind and always trying to help him, she always says its ok mom Koa has autism! He adores JeJa thats what he calls Jayla! Kai is always making us laugh and always has a smile on his face and is full of energy, him and Koa love to laugh togather! I am so grateful for all the wonderful people in my life!
Subscribe to:
Posts (Atom)