We have to give Benz Valganciclovir twice a day. We give it to him at 9 am and 9 pm everyday. It must taste OK because he drinks it just fine every time. He has to have his blood drawn twice a week. On Monday was his first blood draw and he will have another on Thursday. His first blood work told us that his neutrophil number went up to 6600 remember this is the number that was at 200 but is supposed to be 25,000. His neutrophil number is going up and we have not been giving him the neupogen in 4 or 5 days. That is good news. You would not know he has CMV if you met him, Amy and I forget everyday. He is just too perfect. If something show up in the future, we will cross that bridge then. As for now we are living it up with him home.
Yes we are home from the hospital which is great. However we do have a doctors appointment just about everyday. He has to see the Infectious Disease doctor, Ophthalmologist, Cardiologist, Pediatrician, Neurologist, Audiologist, and more plus do his blood draws. This is the start of a new life for Amy and I. This will be a challenge to say the least, but to us more like an honor and a privilege. My favorite bible verse is Matthew 25:35-40, a brief description is here ( http://www.biblegateway.com/passage/?search=Matthew+25%3A35-40&version=NIV). Basically, we are all Gods people and we all should treat other that way. I can't wait to raise Benz. I have already learned so much about myself and learn more everyday. I can't wait for you all to meet him and when you do he will change your life. When he gets the go ahead to be around people again we will have to get a calendar to keep all of his appointments with his new friends.
Good night!
Ben
Ben and amy: it literally brought tears to my eyes. I know exactly allll the emotions youre experiencing (especially the quicksand) with my own health issues (9th specialists since the coma last year) and my heart goes out to you. I know how hard out is to know what decisions will bes best, and thats only for myself as a28 year old. I cannot begin to fathom making those same choices for your tiny little benz. I think sometimes the most frustrating part is getting drs to put egos aside and communicate to make the best decisions possible for him and your family, once everyone is on the same exact page, it becomes less stressfull.you guys are some of the strongest people I've mer, and beyla and benzen are so incredibly lucky to have you as parents, and your parents as grandparents. I 8am say from experience that allll of it becomes second nature, the drs, the blood tests, the news. One day at a time, like you had said in one of your posts. Easier said than done, but if youre constantly worrying about tomorrow, or next week, I can only imagine you missss out on todays milestones :) hang in there, you huys are doing such a great job! Ben, thank you so much for the blog. I think about your family daily, and it actually brought tears to my eyes to read that he came home where he belongs. Even the blood work and medication just becomes second nature, like brushing your teeth or going to work, stuff that just has to be done. You are handling it this like pros! So many people are paying that the drs are wrong (trust me, they dont admit it of course, but it took six drs to finally give me a diagnosis and a ten hr drive to the Mayo Clinic in minnesota to finally find a medication to make me healthy enough to live life) I look at that beautiful little face and I dont believe for a second hes even close to worst case scenario. If theres one thing I've learned is that they tell you worst case to prepare you and av oid lawsuits, when it rarely turns out to bfe the case. You guys have such a positive outlook and thats only going to help benz, along with youre mental health more than you know, but remember, sometimes you just neeeed a good cry.
ReplyDeleteP.s. You forgot an f of quicksand: fun. Cherish the moments where you can get a good laugh in (even if it's because youre so loopy from lack of sleep, it will make you feel ten times better)
So glad you are at home tonight as a family, whete you belong. You have such a beautiful family ben :) I'm sure whatever hands is dealt, you'll find a way to play it and take the pot.
Thinking of you
Xoxo
Jen Bastian
Good Morning Little Remer Family! Too cool what is going on in your home. I wanna kiss his head too! You are in my heart.
ReplyDeleteLove
Josie