This week is the long awaited Spina Bifida clinic for Rhema. Rhema’s little bruised feet are showing the signs of all the growing she’s done lately. We are very happy that during our clinic time we will see Rhema’s ortho team and they can address the changes needed for her braces. I’m amazed at how quickly she has almost outgrown her new braces. Mommas have warned me about this issue, but until now Rhema has not had such huge leaps in her growth. I’m extremely happy that Mr. Bill can get her “helper shoes” safe for her again within the 24 hour period we will be nearby. We have an amazing group that help with Rhema’s braces!
Also, we have to get an additional part for Rhema’s wheelchair so we must get a RX while in clinic. Rhema’s little legs and feet just flail about while she is wheeling around and they are always turned inward. We discussed this with her PT and we all feel Rhema would benefit from a foot plate that would enable her feet to be strapped down into a proper position. Now, Rhema is not thrilled with that idea as she is not a fan of being strapped into anything, but my prayer is that over time she will adjust.
We’ve pushed off her Urodynamic study until the fall as Rhema has a UTI we are dealing with. We’ve seen some improvement lately but will treat it for a little while longer before getting her urine rechecked. Please pray we can get her bacteria levels back to a good place soon and this UTI will go away. Pray for wisdom for us as we work out what methods to use daily with her to help get her healthy and keep her healthy.
During clinic Rhema will have a pelvis ultrasound but that is all the “tests” she will have to endure this go around. Our big topics to discuss with the docs are about her bowels. I’ve really struggled with the idea of beginning nightly enemas with Rhema, however we feel it may be the time we must begin something. I’ve spoken to so many moms lately on the SB forums about all this and so I’m going ready to have an intelligent discussion. I’m preparing my notes (like always) and the bulk of my questions are dealing with her continence issues. We’ve got questions about cathing too but the bulk of our questions and discussions center around a “bowel program”.
I’m happy to say that the smallest part of my clinic notes are about her Hydrocephalus. For the first part of Rhema’s life her Hydro was the primary piece that we focused on; she remained in such critical condition it had to be the primary. But now, I’m happy that we just see our Neurologist, give him and his precious PA a hug, and they continue on their way. Praise Jesus for almost two years without a brain surgery!!! Oh, I pray that this reality remains forever!
We covet your prayers for our time on the road and our visit to clinic. Pray for traveling mercies and for safety while at the hospital. Pray for wisdom and discernment, clarity of thought and communication (for everyone involved) and pray for protection. Pray for peace over Rhema for her tests and just the time in the medical atmosphere. Pray that we have opportunity to be a blessing to those we meet and are a reflection of God’s love. We love our medical team and thank God for them; join us in praying blessings and wisdom over them all. We thank you all for your continued prayer covering!!!