Rhema’s clinic day went better than expected. I’m almost ashamed to say that I expect things not to go well, or there to be some disappointment and/or a hassle of some sort. Most moms who have children who have special needs will tell you that to get the services, equipment and care to properly care for our kids, more times than not, requires some sort of hassle or if we are really honest, an all-out fight. Now, I’m very happy to say that has not been our experience at our Hospital or even with the service providers within our hospital; the problems are in the more rural area where we live. Nevertheless, I’m ashamed to admit I still go into ANY medical/therapy situation expecting some disappointment or problem to arise. I know this is not good, but it is an internal battle I fight to give each encounter/person the benefit of a clean slate and not to let past experiences reach into and effect our present. So, I’m happy to report that THIS time/THIS clinic I can say I was VERY PLEASANTLY surprised at the outcomes.
Rhema’s Urologist said that unless we need to see him, Rhema does not have to see him for a year! Also, another good report is Rhema will not have to begin cathing until after her urological surgery (which will be in 3-4 years) or unless she begins to show signs of consistent UTIs. Now that bad news is she currently has a UTI which we’ve been suspicious about; we are waiting to treat, per docs suggestion, until she is clearly over the sniffles. Our prayer is that over time Rhema will miraculously prove to have more control and feeling that her doc currently suspects; then and only then will she avoid having major surgery and have to cath her whole life. We know that cathing and other procedures are a common occurrence and part of having Spina Bifida, but we are holding out hope that healing will occur. Either way, we will all learn what we need to learn and teach her to take good care of her body. Also, other positive is we will start some “potty time” with her to give her opportunity to void on a potty. Rhema has started on her own showing much interest in the potty so we want to capture her enthusiasm and interest early.
Rhema’s Neurosurgeon was in an emergency surgery and so we met one of his partners. Rhema’s shunt is currently doing fine PRAISE THE LORD and the doc said everything looked fine. The doc also cleared Rhema from needing to worry about her Chiari and said that if she has shown no significant issues by this age then she is pretty much clear of any major issues. PRAISE THE LORD again! Our next clinic, in the Spring of 2013, we will do a shunt check but that’s it if all is well. So, Rhema is rock solid currently with her Hydrocephalus! Begin singing the Hallelujah chorus now as we all do a happy dance of Praise! End the dance with a quick prayer of “Lord, let this shunt function and last until You come to take us home (I’m ready, now would be good) or until you call Rhema home at the ripe old age of 939 years, like Methuselah ! AMEN”
Rhema’s Physiatrist agreed that she needed a second set of braces (AFOs) to “do life” in as the cables have severely limited her mobility. We were VERY happy to hear that a group in North Alabama could help us attain those braces and currently all the paperwork is being generated toward that goal. PRAISE THE LORD! I have been SO discouraged at seeing Rhema’s already limited mobility, be even more limited due to the twister cables. This has been upsetting me greatly. Please pray everything works out for the second set of AFOs!!! Until I see her get casted for the second set and I KNOW they are for sure, I’m very nervous about it. Her doc looked at the indention mark on her hip again and said that he did not know what is was and deferred to her surgeon and her neuro guy. Lastly, we got her prescription for her wheelchair, so she is scheduled for a consult in January and delivery maybe by March in time for T-ball! Yea!
Rhema’s…ahhhh, let’s lovingly call him Dr. Pooh, answered some of our questions about her on-going issues with constipation. He, yet again, recommended a med that we are not too keen on giving her and so we got some other suggestions on things to do with her. Rhema’s current bowel program that we work on daily is seeming to do better as of late, thankfully, so we will try to incorporate in some other things and maybe we will see even more improvement. In our home we ask each other for the “poo report” several times daily, so for us this is our current norm. Why is this important? Rhema’s bowel becoming impacted is not good for her bowel lining/health and it also affects her VP Shunt and fluid levels, which can trigger a shunt issue. Shunt issues lead to hospitalizations, which can lead to brain surgery! NOT a path we want to even remotely go near. Conversely, if Rhema develops a runny stool this almost always leads to recurrent UTIs which can lead to hospitalizations. I know it’s odd to discuss these topics, but urological and bowel care is a HUGE component for individuals who have Spina Bifida and we’ve had to get past our uncomfortableness on these topics. So, I apologize if this is a little TMI for some of you….
Lastly, Rhema’s Orthopedic Surgeon weighed-in on the issues with Rhema’s feet/legs. He said that Rhema is having tibial torsion (her knees down to her feet turning inward of bones/muscles) due to nerve damage which means that some of her muscles are turned on and some are turned off or impaired which leads to pulling the bone into an internal rotation. To this point we’ve addressed this rotation issue with strapping, AFOs and currently with the twister cables. All of the “solutions” we’ve tried are temporary and to correct the rotation issue requires surgery. This is a HUGE surgery and, as I’ve mentioned before, is really scary and upsetting to me. The surgeon walked us through the pre-op, the procedure and the post-op procedures to give us a clear understanding of what to expect. His method is better that what I’ve researched and read about so that was a little bit of relief. The docs recommendation was to wait as long as we feel possible before scheduling the surgery. After hearing all the details, we feel that we will wait until Rhema turns three years old in the fall of next year and then do the surgery early September-ish. Oh course, if Rhema has issues with her shunt, God forbid, that is always a game-changer so we will continue to pray her shunt remains stable. With the surgery being in September that will allow the two months of casting to be completed by Thanks Giving and she can begin weight bearing by the Holidays which will give us all reason to give thanks and celebrate. (smile) We will provide more details and prayer targets for this surgery the closer it gets next year. For now, I have a semblance of peace on the topic and I will rest my worried thoughts for now on the topic.
So, WOW! God is Good Folks! Rhema is looking good and stable in so many areas! AND she is getting the much needed additional braces she so desperately needs; I did not have to threaten anyone and/or cry my eyeballs out all day! LOL! Just kidding…well, sort of…. smile…. It was precious to me in the hustle and bustle of the day to hear the sweet voice of my Lord gently reminding me that He is still near, still holding my hand and continually watching over my Rhema. It was a good day! So, once more I lift my hands in thanksgiving and look up to where my help comes and proclaim– PRAISE THE LORD!
Many, many thanks to all of you who prayed for us during this clinic time! You are all such a blessing and I wish I could hug and thank each of you!!!