Archive | July, 2013

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/

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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!!

Good News

18 Jul

1. For the first time since March, Rosalie is NEGATIVE for C diff!! Yay!!!
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2. Rosalie has not one, but TWO bottom teeth!
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3. Rosalie is doing great in physical therapy (I’m sure it has nothing to do with the fact that we have the best, smartest, sweetest, most beautiful physical therapist in town, Amanda). She even rolled from her tummy to her back today!
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4. She is growing so much, she feels like she gained 5 lbs just overnight!
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5. She has been trying to hold her own bottle!! MB never even did that!

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So proud of our sweet girl. Thanks for letting us brag on her!

She will get IVIG #3 on Tuesday. Please say a prayer for safe travel and no surprises! We should find out more about the bone marrow biopsy at this appointment. Her appointment with the immunologist is in August but we are hoping to get in on a cancellation. Just waiting for a call.

Aside

Rosalie Update – Six Months

14 Jul

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Our beautiful girl is SIX MONTHS old today!

At 6 am on Thursday morning, I sat down to feed Rosalie and typed out a blog post on my phone with my free hand. While adding a picture, I somehow hit “delete,” thinking I was deleting the picture, but instead I deleted the entire post. So now I am going to try to remember what I included in that post. It was basically an update on Rosalie and her doctor appointments from last week. Also a little about our mini vacay. It was really well written because I was in the mood to write. Right now I’m not in the mood or frame of mind to write, but it’s my only chance because both girls are in bed, so it may not be a very enjoyable read. Sorry.

Many of you saw this picture of MB on Facebook:

photo (2)She was having a typical 2 year old meltdown because she saw that beach towel folded up on the kitchen table so she got it in her head that meant we were going to the beach, and right that very second. Ummmm…no, not even close. But we got the hint.

So we decided that before Rosalie’s appointment last week, we would take MB to the beach. We decided to take her to Amelia Island for a couple of days before driving up to Savannah. We had a wonderful time pretending to live a normal life, not worrying about the doctor appointments looming at the end of the trip. I feel really guilty now for taking Rosalie anywhere (you will understand by the end of this post), but she was always with me and well protected from people & the elements. It was nice to be able to enjoy a mini vacation like a normal family, so I am going to leave it at that and try to not feel guilty about it. What’s done is done and all we can do now is go forward and do what the doctors tell us to do from here on out.

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We had a wonderful time and MB had a complete pirate overload. It was the perfect trip for a child who is completely obsessed with pirates. She was even read a bedtime story and tucked in to bed by two pirates and their parrot.

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And of course once we made it to Savannah, we ate at The Pirate House and rode on the ferry. She loved that.

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Unfortunately, all good things must come to an end, and early Tuesday morning, we got up and headed to the hospital for Rosalie’s first appointment with her pediatric GI at 7:30 am. I’ll give you one guess as to what MB wore. I didn’t take a picture, but of course she dressed like a pirate. Dr. Rittmeyer thought it was hilarious. Not a whole lot to report on this appointment. He did some lab work the week before and Rosalie’s ANC was 94, the lowest it has ever been. We will only see Dr. Rittmeyer on an as needed basis now. He did not test to see if she still has C. diff, but even if she does, because of her immune system issues, there is nothing he can really do to help her.

Then it was time for Rosalie’s appointment with hematology. First she got all the usual labs drawn and then an IV placed for the IVIG infusion. God bless nurses. Especially the sweet nurses who work with screaming babies and frantic mamas. I am a calm mama. I let the nurses do their job, support them in anyway I can & do my best to try to comfort Rosalie. (But I’ve been around it enough now that if I see something wrong happening and my child is suffering because of it, mama bear does not keep quiet!)

rosalie infusionThe infusion takes a few hours, so Rosalie gets a good nap or two in. It is exhausting, especially after screaming her sweet little head off. After a couple of hours, the lab results started to trickle in. Her CBC came back first and her WBC was up to 6.6 and her ANC was over 500! I was so excited, especially after how low it had been just the week before. But then Dr. Whittle came in. He started talking about something I know nothing about and do not understand – immunoglobulins. He talked to me about the results of this other lab work – her IgG, IgA, & IgM levels. She is deficient in these immunoglobulins. This means her immune system is very weak and she is very susceptible to picking up any illness she comes in contact with. Dr. Whittle said we would need to increase her IVIG infusions to every two weeks, she needs a bone marrow biopsy, and told me not to take her out of the house & only keep her “among family.” He is also referring her to an immunologist in Savannah. And she still cannot get her 4 or 6 month vaccinations.

Please just say a prayer for her. Best case scenario, I will just have to give her a neupogen shot everyday to help boost her immune system. Worst case….is much much worse than just a shot. So please just say a prayer.

On a good note, she is doing great in physical therapy and she has really found her voice lately. I also found her tickle spot today and she giggled so loud, it was the best sound ever! She loves her big sister so much. She loves sitting in her seat and watching MB walk around and play. If only big sister would pay her a little more attention!! But it will come!

Coming soon

9 Jul

I’m sorry for the long gap in updates. Rosalie had two appointments today so I will post an update tomorrow. Right now I honestly don’t even know what day it is. Thankfully these phones have calendars so I can keep my days straight!