Update (Bc I’m too tired to think of a catchy title)

24 Jul

20130724-200748.jpgSo…here I sit on a green velvet couch holding my sweet sleeping baby. The same green velvet couch I sat on eight or nine years ago, holding another sweet sleeping baby, one who would also be my flower girl years later. It’s funny how something so insignificant can make you feel so at home, and this couch has made me feel at home this week. I am so incredibly grateful to its owner, who so selflessly handed me the keys to her house so I would not be stuck in a hotel yet again. Washing bottles in a hotel sink with a toilet right next to you just doesn’t seem sanitary! I cannot thank her enough.

Not sure where to start with Rosalie. I have done nothing over the last two weeks except read about immune deficiency syndromes & bone marrow failure syndromes. I have talked to lots of moms online who have babies going thru similar things and I have met only one mother whose child comes close to Rosalie, although the child does not have Down syndrome. She told me about a top researcher at Seattle Children’s & I have even exchanged emails with that doctor, which was helpful.

So, when we met with Rosalie’s hematologist Tuesday, believe it or not, these are the things he brought up- immune deficiency syndromes & bone marrow failure syndromes. We even actually had a hypothetical conversation about what would happen if she needed a bone marrow transplant. Whoa. Slow your roll there, doc.

Basically, Rosalie is being tested for several different things, cystic fibrosis is one, and then many are very rare syndromes. One of those, the main one being focused on right now, is called Shwachman-Diamond syndrome.

Here’s another link with good info if you are interested:
http://www.seattlechildrens.org/medical-conditions/heart-blood-conditions/shwachman-diamond-syndrome/

20130724-200541.jpg
I don’t know how nurses do their jobs. We have the same three nurses every time there and they are the best. I felt so bad for the main one, E. After the three of them got Rosalie’s IV in & then had to stick her again for the labs (long story), she was NOT a happy camper. Anytime they stepped foot in the room, she cried & screamed bloody murder. And if you’ve ever had IVIG, you know the nurse comes in a LOT to check vitals during the infusion. It was awful. And it was so hard to watch. Yesterday may have been the hardest day for me. The older they get, the harder it gets because they look at you like, “help me!” Ugh!

So the hematologist is running two very unpleasant tests on her pancreas using this nice big container. And he actually gave me two? Wish me luck on that one.20130724-200312.jpg
We saw the immunologist today, Dr. Finkle. Rosalie & I both like him. He was very kind and good with Rosalie. He said we could pretty much rule out that it is an immune deficiency syndrome, but he cannot study her Ig levels because the hematologist already started her on IVIG for the neutropenia. So now she cannot have IVIG until November, which means we have to be extra super careful with her. He said she is going to get sick without it but that’s the only way he can study her to make sure. Then he sent us back to the hospital for them to draw more blood for more tests for Shwachman Diamond Syndrome and X-ray her chest. Shortened ribs can be a sign of SDS. I am supposed to call him back next Wed for all the results.

So please, just keep Rosalie & our family in your prayers. I am trying not to really read too much into anything yet. Right now, I just feel like SDS is so rare, could it really happen to us? But if it’s not SDS, then what is it? So there are just a lot of unknowns. So we will just keep praying and doing our best to keep our sweet girl happy & well!

****Another H U G E thank you to my friend Holly in Savannah. When I got into town Mon afternoon & unloaded everything, it started flooding & I never got my key out of the ignition. So a couple hours later I went to crank it up to go get some dinner & it wouldn’t start. Holly came to my rescue with her Beamer & her jumper cables & you should have seen her out there battling the huge puddle I was parked in & the mammoth mosquitos, just to get my big black boat started. Needless to say, Rosalie & I ended up at Auto Zone at 7:30 Monday night. At least it didn’t happen Tues morning before her appointment. THANK YOU HOLLY!!

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2 Responses to “Update (Bc I’m too tired to think of a catchy title)”

  1. mel8907 July 25, 2013 at 11:46 am #

    Sending lots of prayers your way! I hope you get some answers soon. I’m on the bone marrow registry. If worse comes to worst, can you imagine if we ended up being a match?!

    • sogamom July 25, 2013 at 11:54 am #

      How completely crazy would that be? That would be all God’s work!

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