Here we go!

We’re getting close to our baby’s due date! Did I ever officially announce we’re expecting on the blog?? Oops! Well, baby boy should be making an appearance in the next 4 weeks. His official due date is Valentine’s Day which is also Justus’s birthday. In the meantime, here’s a little update on Miss Mary Lou!

We had her follow-ups in Cinci a week and a half ago. It went very well. We all are quite pleased with her response to the ivig treatments. These are the intravenous immunoglobulin infusions she’s been receiving every 6 weeks. She’s been healthier for longer than ever in her life and has continued to make progress developmentally instead of having regular regressions and severe illnesses. Due to this good response, her neurologist recommended continuing the treatments and we’re trying to work with him and a neurologist in Indiana to have them closer to home.

Her geneticist and endocrinologist are currently quite happy with where Mary’s at and especially her good growth since our last appointments. Once again, this is likely thanks mostly to her good health. The geneticist wants to refer us to some new doctors with our next set of appointments so we’ll have probably 3 days of appointments in 6 months.

And finally, we also saw ophthalmology and found out Mary needs glasses. This isn’t terribly surprising as eye problems tend to come with CFC and we’ve noticed some things that made us wonder about her eye sight. But we were still surprised by how near-sighted she is based on what the ophthalmologist showed us. It’s exciting to think soon she’ll be able to see so much better and we’re looking forward to how this may affect her development as well.

We have a few prayer requests over the next month as we try to tie up loose ends before my due date. First, driving 3 hrs to Cinci every 6 weeks for a 7-9 hr infusion and then 3 hrs home is pretty exhausting and we’d appreciate prayer that God will provide a way for us to do them locally… especially with a new baby coming! Second, we’d love to have the glasses at least ordered before baby’s arrival. As we’ve discovered so many times, things aren’t generally just easy to do for Mary’s care and the glasses have been no exception. Third, we have lots of scheduling to do for Mary’s next set of appointments and with the amount of coordination that takes, we need to get that done as soon as possible. We’d appreciate prayer for things to fall into place for those follow-ups this summer. And lastly, we’d appreciate prayer for the safe and healthy delivery of our new little guy!

I’d like to share a few praises too. First, the blessing of the ivig treatments that have helped Mary so much. We didn’t know what to expect going into it but we are very grateful for 3 months of good health for Mary even when the rest of us have been sharing germs! Second, we’re grateful for the knowledge and ability to get Mary glasses. And finally, we’re very grateful for the blessing to be working with the RAS clinic at Cincinnati Children’s Hospital. It was brand new when we got Mary’s diagnosis a year ago and it was a little hard to tell how it would progress. Well, they are currently working towards adding new specialties to the clinic which makes our follow-ups easier. And it’s wonderful to be working with doctors who really take a team approach and who are always tracking the latest research on RAS mutations. It makes even more of a difference that they specialize in treating kids with rare diseases and much of the weight of Mary’s medical needs has been lifted from our shoulders thanks to their clinic. This is a huge blessing and there are only a handful across the country, so living only 3 hours from one is no small thing! Thank you for joining us in all this and praising God with us!

3 thoughts on “Here we go!

  1. Such a great update to read, especially since we haven’t connected on the phone yet! Praising God with you for His many blessings on Mary’s life and yours. What a testimony this little girl already has! Praying for all the other things too. Thanks for the update. Love you.

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  2. What a great update, Hannah. So grateful! It’s been a joy to see Mary progress and stay healthier. AND so fun to see her beautiful hair come in, too. I’ll be anxious to see how glasses will open up her world. Love to you all, Carole

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    1. What great news about Miss Mary’s response to the new treatment! And life in general! PTL!! We continue to hold you in prayer for daily strength, patience, and love to parent the dear children God has given you.
      Breathe! We love you! Linda H.😍

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