Thursday, February 14, 2013
Well hello there! It has been a very long time since I have updated this blog! Today is Valentine's Day and I have 3 amazing Valentines any one could ask for! Last night I started crying because I remembered what Adam asked me out of the blue, he said "mama if I die young will you still love me and always remember me" at this point of Adams diagnosis we had not talked or even mentioned that he was gonna die. Children are amazing and from the day he was diagnosed until the day he stopped talking he told me "I love you mama" a hundred times a day if not more! I think never mind I know that was Gods way of giving me a lifetime of I love you's, and for that I'm very grateful! So here is an update on Adam. We have had a rough week with fever and congestion but today he is doing much better! As far as the diagnosis of ALD Adam has not had any major changes. He has developed sleep apnea and sometimes wakes up thru the night because he is having trouble breathing. Other than that he has just been on this steady streak of nothing major happening! Thank God! Here is some good news but then not so good news. Since Adam has had no major changes they want to take him off hospice until he starts declining again. Yes how amazing is that but here is the downfall, hospice is great as far as having a nurse come check on Adam twice a week, having an on call nurse 24/7 and they supply diapers, wipes, chucks and meds and they all get delivered to our house. So we are waiting on a sleep study and an MRI to show that Adam is still declining just not as rapidly ad he was. Alayna had been doing quite well. She is an amazingly strong 7 yr old that is going thru so much in her life! She does struggle on a daily basis with everything going on with her brother. I want to thank those that think of her and want to spend time with her outside of the house. Her everyday life revolves around Adam and she hardly ever gets away. She does make little comments about how much she misses her brother. She misses them playing, talking, fighting and just hanging out. Well this is it for now I will try to start updating more often! Please continue to pray for Adam and our family! Thank you and God bless each and everyone of you!!