Rosalie, the one year old

26 Jan

20140126-102207.jpgI feel awful that I have not updated in several months, but I have just been busy living life, taking care of two precious little girls, enjoying the holidays, moving, and trying to keep up with all of Rosalie’s different appointments.

Rosalie is doing great right now. She was officially diagnosed with severe chronic neutropenia & placed on the Severe Chronic Neutropenia International Registry. The registry is for research purposes & the great part is that they provide Rosalie’s medication for free. She gets a neupogen shot everyday. Learning to give her a shot was absolutely awful, I truly hated it & did not think I would be able to do it. But she & I finally got used to it & now it is not a big deal, thank goodness!

The great news from her visit to the doctor in Michigan was that her transient hypogammaglobulinemia has resolved itself. That was a huge blessing. So she has not had an IVIG treatment since July & she is finally getting her vaccines.

She will see a GI doctor at Shands next week for some continued tummy issues she has had since she was a month old. And in February she will see an orthopedist at Shands for a leg length discrepancy.

Right now she is fighting a really really nasty cold or something. She has been running a fever since Friday morning & putting the Nose Frida to good use. We planned a little birthday party for her yesterday & we had to cancel it because she was feeling so bad. It was so disappointing.

Rosalie brightens our world every single day. She is just so sweet & beautiful. We absolutely cannot imagine our lives without her!!

20140126-101413.jpgRosalie on her first birthday- she likes loves cupcakes!!!

20140126-101716.jpgPlaying outside with sister

20140126-102120.jpgChristmas Day


2 Responses to “Rosalie, the one year old”

  1. Harriette sutton March 16, 2014 at 10:43 pm #

    Rosalie is so precious!! I’d love to get to see you all again soon. I got distracted the other night at the reception and didn’t make it back to visit with you. We will be praying for Rosalie’s health to continue to improve. Head congestion, ear infections, and colds have always been a problem for Kari. I’m praying that Rosalie won’t have the ear problems that will cause hearing loss like kari has. Kari hears ok, but I think the timing of the severe ear infections ( when the critical language skills should have been learned), play a part in her poor speech articulation.
    I love your blog. So sorry I’m such a scatter brain and didn’t get to visit more with you all the other night. I can’t wait to see and hear more about Rosalie. God bless and keep you all! Harriette.

    • sogamom March 16, 2014 at 10:54 pm #

      Thank you so much! And please do not apologize, things were crazy and there were so many people around, we were just happy to finally meet you & Kari. Will talks about Frank all the time & I think he has been a great source of encouragement for him over the last year. Kari is absolutely beautiful, and I’m not just saying that. She looked like she was having the best time seeing everyone last night. I hope we can get together soon, we would love for y’all to meet Rosalie and get to know Kari!

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