(Long Overdue) Update on Roo

I haven’t written about Roo or her health situation in a long time. Other than needing to complete the genetics tests with a blood draw from DH and me, our fall was pretty uneventful—until the end of October. Since then, Roo has had problems with several sinus infections and a stomach virus that sent her to the hospital on Christmas Day.

In November, we rejoiced that her overall IgG level had risen 80 points in the three months preceding the blood draw. We were close to the goal of “over 1000” and were looking forward to the possibility of starting a trial off the infusions as the weather gets warmer (and there are fewer germs floating around). Wednesday morning, I found out that the her overall IgG level had dropped almost 100 points since November. The infections she’s been fighting have caused her to use up antibodies faster than her body makes them and we can put them in with the infusions. The discussion about trialing off the infusions has been tabled until we can get her healthier and get her levels back up.

She’s also having to transition from Vivaglobin to Hizentra. We should start that next week, and we’ll probably have a nurse (and two Epi-pens) present to be sure she handles the new product okay. I knew this change was coming, but I didn’t expect it to be now.

As if that wasn’t enough news for the week, she was diagnosed with a sinus infection and thrush on Tuesday—and her pediatrician expressed mild concern over the fact that she hasn’t gained weight in over a year. We’re in the process of looking at her average calorie intake to determine if she’s eating enough calories every day. If not, we’ll increase her caloric intake. If she is, we’ll talk to the GI about investigating possible reasons why she might not be processing those calories effectively.

She will have another ENT follow-up next week, and DH and I will have the blood drawn that will allow them to (finally) finish those genetics tests.

It’s all going to be fine. It will just take some detective work and cooperation among specialists. God will work it all out. I’m counting on Him, and He has never let me down!

Photo credit: Jennifer A. Janes

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10 Responses to (Long Overdue) Update on Roo

  1. Robin says:

    Praying for you and your little baby girl. I had no idea. Thank you for sharing, and for putting my measley mishaps into perspective for me. Hugs to your family. Roo is beautiful!

  2. Rebecca says:

    I’ll be home later this afternoon….would love to talk on the phone with you!!!

    Hugs!

  3. Maggie says:

    I am praying for you all.

  4. Jeremy Janes says:

    God will see us through this trial with Roo. Sometimes I ask God why she has to go through so much medical challenges.

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