5 years ago on St Patty’s day, I would have been enjoying a green beer in Westport with my sisters. I love to go to Westport on this day! What I wouldn’t give for a green beer at Kelly’s. But fast forward to almost 5 years and that just isn’t our reality! Instead I spent it at home with all of our kids, who all have a cold and wiped and sprayed my house 100 times praying Bo doesn’t get any sicker. Who would have thought that this was our reality?!? It’s amazing how times have changed! So we have been back from our trip,for a month and I can’t even tell you how amazing our time was at Give Kids The World, It was truly unbelievable!
We have our agenda for NIH, we leave April 27th and come home on the 29th. Everyone knows I’m a freak about schedules, we have a schedule… We have to be at NIH at 6:30 am Monday April 28 where we will check in, get blood work, he will have a CT scan of his chest and abdomen. I’m super excited about that because they can compare his November CT scan where he had 6 new granulomas in his lungs. We will then have an LP( lumbar puncture) spinal tap what ever you want to call it. We will meet with 1 dr at 1:30, more blood work then meet with a dr at 2:30. Then have an X-ray of his tummy. We will then wrap it up with 3 dr meeting with me, Bo and John. To go over what we have. This Dr at NIH has had Bo’s medical records for over 2 months and he has gone through them with a fine tooth comb, I think that’s what I’m most excited about! He is putting in hundreds of hours trying to figure Bo out, as is his colleagues! 3 hospitals, 3 different states in 3 years!! This has to be our answer, our hope, we’re so close! We have been told this isn’t a 1 time trip, we’re talking several several trips to NIH. Where do we stand for now,Bo has been sick for a few weeks, spent last week in the hospital he still isn’t 100%. But he defiantly has more energy then he did, he gets IVIG Sunday so that will help! He also gets his hearing aids on Monday! This is going to be a learning experience for all of us. With all of the medication he is on his hearing has taken a hit, it wasn’t 100% from being such a small premie, so with the help of high dose antibiotic it just made it worse. He pretty much can’t hear you if your talking behind him, so we have all gotten used to that and talking to him from the front! He is also getting something called DEXCOM… I have never been more excited in my life for something then I am for this!! So.. What is it?? It is a small pod that will stay on his body like his belly or back side, it’s a continuous glucose monitor!!!! Which means I can pull out the meter that comes with it and it will tell me what his Blood sugar is!! Holy crap!!!!! Bo has been diabetic since he was 9 months old! I check his blood sugar(we) check his blood sugar anywhere from 8-10 times a day. Because he just can’t tell me he isn’t feeling great because he is high or low! I can usually tell by his body language or if he is flush or sweaty. For the past 3 years I check his blood sugar at 1:30 am EVERY SINGLE NIGHT! Mostly for my piece of mind since he has a pump! Now I won’t have too, I will just be able,to push a button and it will tell me where he is. Then it will alert me if he is high or low!!!! Wtf!!!?!?!? I’m so excited about it!! You have no idea how excited I am for this! I’m excited and nervous to go to NIH, I’m so ready yet I’m terrified. These people deal with the rarest of rare diseases and we already know Bo is super rare!!:) I have to remember that these will be 4 long years of questions, I hope and pray they have our answers they will be our lifesaver! I keep praying that the next day will be nice and he can go outside and enjoy some fresh air, here’s to hoping tomorrow is at least 60.