Surgery day!

Today Bo got his port!! Yay!' it went very very well!! I was so very thankful to KU med, the people at that place are unbelievable! After our big fiasco getting his g tube at childrens, this was a walk in the park!! I can't explain how wonderful all of the nurses were!!! So he will rest for the next Few days! Next week we will figure out our schedule for the other stuff! Thanks!

C

Ready for tomorrow!

Finally asleep! Tomorrow back on all his meds!!! Yay!!!

T- 1 day!

Tomorrow morning we have to check In to KU at 6:30am. Tomorrow is port day! The port will go on his left side of his chest, hopefully it will only take an hour to an hour and a half! Please pray Bo blood sugar cooperates, for his body not to reject the port and his pain is under control!! We are supposed home tomorrow afternoon , depending on his pain and his Blood sugar! I hope this does happen! I hate this feeling of not being In control, it's so very stressful and heart breaking to hand your baby off to a stranger and hope they will try to comfort him! Ugh it makes me sick!! I pray tomorrow is easy and quick!! No problems at all!!! Pray for his pain to be Under control and his blood sugar regulates!!

C

Happy mothers day

What a day it was so wonderful! Started by having a wonderful yummy brunch at union station! Then we headed to McFaddens to have a lovely beverage. Then we headed to the music hall to too jersey boys!! It was so good!! We had so much fun!

DR TIME!!!

Monday we had our follow up with Dr Dasouki, I think Bo finally has a "diagnosis" IPEX! A rare genetic disorder that causes, diabetes,growth hormone deficiency,thyroid problems,IGA deficiency,chronic diarrhea. This is Bo in a nut shell. This is just the Health part of his problems. When he was 10 months old we have heard about this syndrome but until he got worse they would wait to test for it. Well here we are, IPEX, It is so rare the only Place you can send the test to is Seattle children's. We will eventually go to Seattle to meet with this Dr, Not now because it is flu season,all of our DR are on the same page and have had a conference call with this Dr in Seattle to make sure we are all in this together. This is going to be a learning experience for all of us, but our genetics Dr is amazing as is all of our Dr, But they are learning as we are. I would suggest you don't google it, its not a great read! We have talked about this for a long time, but hearing it from the Dr mouth is different. For 1 month I have had a lump in my throat,I know we can get through this! It is just alittle shocking to hear it. We have lived with this we know what we are up against, he was in the hospital just last week. It is just hard hearing it. Everyone knows i suck at blogging and i will try to get better so everyone can stay up on Bo health, I didn't want this to be a "BO Medical" blog But its the only way I can keep up without saying it over and over. We had an MRI scheduled for Dec 28 but the Dr said it was ok if we put it off for a bit keep him out of the hospital as much as we can. Besides the prep work for an MRI sucks, he as to fast not fun. With that said we are working hard on some of his other issues, trying to get him stable on his feel and working on getting his left side stronger! I promise you it could be worse I know I have seen it. We are so lucky to have such an amazing family and friends it helps us so much! SO thank you for all of your continued prayers and support.

here is a link if your intrested. www.genetests.org and clickon reviews seach IPEX

Hi!

I have said since day one I suck at this! So here I go again! Since the last time I blogged so much has changed it's crazy!!! So June 10th Bo got his GTube, it has been our life saver! Since June we o has been fighting what they call "Chronic" diariaha? So we have seen a new Gi Dr at KU who is amazing and Genetics also at KU and this work was thrown out a lot! IPEX SYNDROME (a rare genetic disorder) so rare we would have to see a Dr in Washington St! So ON Halloween we have this 2,050 blood test taken that insurance wont cover of course! We will find out on Dec 5th. I have been going back and fourth with this is it is it not!! If you go to www.genetest.org and click on reviews it will tell you more. We also just met with Immunology and found out that Bo also has IGA deficiency. Which means his immune system well he has none! Hints why we have spent so much time in the hospital. I have said to myself I need to blog but honesty I was not ready to put all of it into words! I am not sure why! That's just half of all of the things going on in his little body!
Brooklynn is a rock star talking so much she is such a character so funny! Leksi and Johnnny are ready for Thanksgiving break they are both trucking right along with school. It's hard to believe Christmas in in 5 weeks where has this year gone? Hell When the Twins were in the NICU i thought it would be the longest 3 months of my life but here we are! Crazy!I am looking forward to a Great Thanksgiving and trying to keep my mind off of DEC 5? The closer it gets the more nervous I get!

I am trying to talk my husband in to taking me on a Date sat, to see Breaking Dawn! I don't think he is going for it! I can't lie I am super excited to see it! Even though the books are always better!

I am blogging from my phone