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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!

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2 Responses to “Rosalie Update – Six Months”

  1. Lindsay Colson July 14, 2013 at 10:46 pm #

    I’m so glad that you were able to get in a little family vacation… I know that it was well needed by you all! Praying for the little Miss. I hope that you get some rest and peace about it… love yall… to say that you’re in my prayers would be an understatement.

    • sogamom July 14, 2013 at 10:50 pm #

      We love you Lindsay!!! I totally meant to include a whole part about our photo shoot! I’m gonna go back & edit it later or do it in the next post (or both). I was so tired, I just stopped writing & now I’m in bed on my phone. ;). Thank you for the prayers. We appreciate them more than you know!! We are praying for you & sweet baby E too! Xoxo

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