Hi everyone, I hope your Christmas was wonderful!! I need your help and prayers!! In June I had someone contact me from Team Kris, she was searching for a bone marrow transplant and couldn’t find a match. So in August she had a cord blood transplant and now her body is rejecting it! Kris’s husband Ken came by our bone marrow drive and thanked me personally for holding it! I was so thrilled he was their and took the time to come by! Kris is very sick and needs our prayers so does her family!! Please please give her the strength to keep fighting this terrible shit! Pray her family, her husband and children can stay strong for her!!! Here is a link to her blog!!! Thanks
In September I had a gentleman contact me about Bo. His name was David, his grandson Cooper was fighting his ass off because he has IPEX.. He is a very very sick baby he was Born in July and been in the hospital ever since! 15 days ago he started the process for transplant and yesterday he lost his fight! He passed away at 8:30 yesterday morning!! I am so sad for this family and I can’t even begin to imagine how they are feeling! I am so angry that this existed and his older Brother will never know how much of a fighter this little boy was!! It makes me sad that he never got to go home and his little body hurt everyday! I have never met Coopers mom and dad but, I want them to know how amazing I think that little boy was, how he fought his ass off until his little body couldn’t take any more! I am so very sorry for their loss my heart is breaking for them! Please please keep them in your thoughts tonight, and all of the families who are going to sleep with out their babies tonight!! Ugh this weekend sucked!!!
You know that saying when life throws you lemons you make lemonade? Well, Bo has been in the hospital since Sunday! We hate winter it blows! He has been sick since his ear tubes were removed, with everything you can think of! So 2 weeks ago we had an appt with immunology and had some blood work done! Yesterday we got those results, it shows that Bo produces no T-Cells, what does this mean? I am not 100% sure, but he can’t fight off infection! So they don’t think IVIG is going to benefit him, actually since he is IGG, IGA deficient it may hurt him?? So we are consulting with Denver children’s and Cincinnati children’s to see if the only option is transplant?!? This is very rare and with everything else they have no idea how to treat it or handle it along with everything else! So for now please pray we get out of here soon and pray for us to find a Dr that understands the difficult kid that Bo is. We are so lucky to have these amazing nurses who keep me from losing my mind and are so wonderful to Bo! So thank you!!!!
I can’t believe Bo and Brookie turned 3 this week,where has the time gone? It seems like yesterday when we were headed in to have a c~section to start this very crazy ride, bringing 2 very sick babies in to the world! 3 years ago today, my blood pressure was still so high I couldn’t even go in the NICU yet to see them. THe NURSES oh where do I even begin, they were my eyes and ears for many many days, they were so involved and helped me in every single way possible it was amazing, they were amazing. Now here we are 3 years later, 3 very long years. I was doing some looking around and NOT including our NICU stay, Bo has spent 249 days in the hospital since he was 9 months old!! Pretty impressive! I say these 3 years have flown by but some days it seem like they are only 3?? If I would have known I would have kept track of our Dr visits I am sure it would have been impressive too! BUT, 3 is also a good thing some people didn’t think Bo would Be here and he is, he is walking and talking( thanks to the Britain center) He laughs, despite all of his complications he is happy! Would you be? I am not sure I would!? Brooklynn is also amazing she is little miss bossy pants, I mean really! She tells Bo, and Johnny what to do all day long its really funny! To see Leksi and JOhnny be Big Sister’s and Brother has been quite amazing too. You never plan to have a baby early let alone 2, and they couldnt see B and B the whole time they were in the NICU. One of my favorite things has been to see Leksi and Johnny interact with them, knowing that this is their role model is fine with me!! It is one of the best parts of bring a parent!! Last night everyone met at our house we had chili then they were off! Bo wanted no part of the craziness so he stayed with MaMoo and Papa, Brookie and I were only out for a bit! We love our neighborhood all of Leksi and Johnny friends met here and they all trick or treat together I love it, they love it! It’s crazy, we had SO MANY tricker treaters!!! It actually makes me very sad, Leksi is 11 it could be her last year? She will be in middle school next year, who knows what middle schoolers do??:) ugh!!! Have a great week!
First let me start by saying!!
Clara’s Crew is having a bone marrow drive Sat from 11-2 please please if you didn’t come to Bo’s bone marrow drive please consider coming out!! It’s just a simple cheek swab!!
Manchester Park Elementary
9810 Prairie Creek Road
Lenexa, Ks 66220
Please you never know you may save a life!!!!
So Bo got his ear tubes out last Friday!! Because his body is rejecting them? Yep a first for many Dr to see! Everything went will, his sugar was low so they started him on D 5. I was a little worried about some random person accessing his port so I made sure she used the needle that the others used! Anytime someone access his port it stressed me out after the big fiasco in July, I am pretty sure the poor nurse was as nervous as me!:) but she did great and our ENT did a great job telling the staff the kind of kid Bo was!! So all weekend he did pretty well until Sunday morning, his ear was bleeding, really bleeding! I called the dr they told me what to use and with in 3 hours it we t from blood to green smelly goo coming out!! It was terrible! Of course I assume its an infection, we went to the ENT Tuesday morning where she deep suctioned all the goo out and filled it with antibiotic drops! So far so good, other then this terrible weather he has to always wear a hat since he has a hole in his ear where is tube was! He can’t get it wet for a month!!:) great!!!
Don’t forget about the Bone Marrow Drive tomorrow!! I will be their will you??