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!
Thursday, November 17, 2011
Thursday, July 14, 2011
Wednesday, June 1, 2011
1 surgery down 1 surgery to go!
So Today I had my Ablation, got to the hospital around 6:30 and home by 11. I was in some serious pain for a bit. I guess i was expecting it to be a piece if cake, I am not one to lay around I am just not a lay around kind of girl! But today I laid around it was like a mini vacation! My amazing Husband was fantastic he took such good care of me, he is so sweet(when he wants to be);) he clearly didn't like to see me in pain or upset so he tried what ever he could to help. My in laws kept the babies all day and they will have them tomorrow too so I can get some rest, I am so grateful that they are happy to have them for 12 hours at a time considering Bo isn't the easiest to handle he is very moody but my father in law tends to walk where ever Bo wants and has a lot of his attention My mother in law too I guess that's the benefit if being a grandparent. He wont sleep in a pack in play, so his Wonderful Big sister rocked him to sleep I will put a pic up of that I am sure my father in law took one. So we are a busy surgery family, today was mine and Next Friday June 10th Bo will be getting his G Tube. We have tried everything we can to avoid this but it just isn't happening. This is the best thing for him, even though I am stressing and so is John about our little guy having surgery but if this can help even a little it will be well worth it. So our Summer is off to a very busy start. I am hoping to be able to take The big kids and Brookie to the pool soon I am excited for that, Bo will have to stay with my in laws he is not a fan of the water, even though he swims once a week in therapy I have to swim with him. Plus I have to take his pump off and the heat makes his sugar crazy so we wont chance it.
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