Today we will be discharged and going back to the 801. Right now we are playing the infamous waiting game. Jonah has a disease that is like Cystic Fibrosis. Although the treatment plan is the same it has a different course. Thank goodness! We arrive in Salt Lake at something we will then take Jonah up To PCMC and he will be admitted there for 2 weeks. This will be a reoccurring thing in our lives. Every two months Jonah will have a two week stay up there. The doc down here called it a "tune up." He will once again start having CPT multiple times a day. When he gets older/bigger they will have him start wearing a vest that will shake the snot out of him...no pun intended! He had a biopsy and we are waiting for those results. So that is our latest not the greatest update. I know it sounds strange,
but this is what I wanted and needed to keep moving forward. Jonah finally has a diagnosis! Now I know as his mom, where to start...unfortunately it is a long stay at Primary children's. Luckily we have a great posse up there who know and love our little Jonah man!
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I am so happy for you to finally have a direction to go. I would like to find out what room you are in up at PCMC... we will be very frequent visitors there for the next 4 weeks. I would be great to come see you and Jonah if he is allowed visitors. Let me know!!
ReplyDeleteOh my gosh. I just learned I can post comments. All this time I have been following your blog and thinking "oh I wish I could say..." and it turns out I can. Ha ha ha. The funny thing is, all I want to say now is that I am stoked I can start posting comments. Oh and God bless you guys.
ReplyDeleteFinally a diagnosis! Not the best.. but at least you now know what kind of animal you are dealing w/ and where to go and what to expect from here. love you guys.
ReplyDeleteJessica!!! why is my little guy being admitted?:? darn it!!!!! make sure he comes to infant..
ReplyDeleteI WILL SAY EXACTLY WHAT MAE SAID.......I AM SURPRISED AND HAPPY THAT I CAN COMMENT TO YOU......
ReplyDeleteI LOVE YOU JESSICA.....I'M SO HAPPY THAT YOUR MOTHER AND S DAD ARE THERE WITH YOU.....JONAH HAS MADE IT THROUGH YET ANOTHER MAIN EVENT IN HIS LIFE....HE IS A REALLY STRONG LITTLE MAN......AND IS COMFORTABLE IN THE LORD'S ARMS......JONAH NEEDS A CAPE AND TIGHTS.....HE IS A REAL TRUE SUPERMAN.......
XXOO GRAMMY