Well, we have another spina bifida clinic in our rear view mirror. (Literally and figuratively). We’ve just arrived home and before this weary momma lays her head to rest I wanted to do an update. First, thank you so much to all who keep us in your prayers. Rhema did well for her scans and we got good reports all around.
Rhema began her day with a renal ultrasound. Rhema is always pleasant, but she showed some apprehension this go around. She kept pointing to the door and pushing us away as we tried to position her for the warm goo they put on her tummy. The more she grows up the more we know she will let us know how she feels about things. Gone are the baby “oblivious days” when she would just lay there for anything. In the end we had to hold her down to keep her still enough to begin the procedure; once the lady got started Rhema did relax some and we did not have to grip her as tight. I was so proud of her braveness! The lady gave her the sticker you can see on her shirt and she felt some better after that! I’m telling you guys, stickers are powerful –that is why we did our sticker drive for the hospital when Rhema had her last surgery. I see how the sticker helps to bring immediate uplift after something scary like a scan or procedure. I see more “sticker drives” in our future. LOL! Oh, and even through the day Rhema talked a lot about them “taking pictures of her tummy” and told many people about it. We spoke very positively about it with her and helped her process it in a positive light as much as we could.
Clinic always begins with a check of her vitals and the dreaded blood pressure check. Under much protest and tears we made it through all her vitals and we found out that Rhema is now 42 pounds! No wonder daddy and momma’s back hurts so much now! She’s grown so much in length too as everyone said she’s turned into a big/little girl; gone is the “baby” that they saw 6 months ago. They even raised her wheelchair headrest up as they examined the modifications we’d had recently done. Yes, our little baby is growing into a little lady. Rhema will be 4 years old in a little over a month! Where does the time go? Seriously, does anyone know???
Each physician, therapist, technician, social worker, etc… came and went from our room and took a cookie with them on their way out. (We always bring yummies to clinic day to bless the folks on Rhema’s team. We leave the boxes with the front desk ladies and they then share them with the additional staff. It is wonderful to see smiles on the faces of the folks who help with our little girl.) We got great news from the Neurosurgeon that he does not need to see Rhema for at least a year due to her doing so well! Unless she has an issue with her shunt (in Jesus name she will not) Rhema will be almost 5 years old before we see him again! WOW!
The Physiatrist is contacting us next week about the topic of beginning a bowel program for Rhema. We think we will be returning soon to see him for training on administering the invasive bowl procedure that we will be beginning to do nightly with Rhema. We’ve expressed our apprehension with beginning a program and our desire to be fully trained. If we cannot get in full here, we have a good contact at the Shriners that has helped us in the past. We’ve initiated an email to her already in preparation for next big step in Rhema’s care. Also, we are getting around 5 prescriptions from the Physiatrist via email next week: a bath chair, a potty chair, alternative diapers, swim diapers, and a wheelchair “shoe holder with straps” for Rhema’s wheelie. Whew! We’ve got lots to research, lots of calls and lots of prayers on how to navigate all of this new stuff.
The Urologist was concerned about Rhema’s UTI and so we explained in detail how we discovered it (as a habit I always get her urine checked for infection prior to a big test even if she does not exhibit symptoms which is how we found the infection), what we are doing for it, when we are re-cathing to check it’s progress and our contingency plans if it remains unresolved. We’ve already rescheduled her Urodynamic study for a few months from now and he seemed pleased with our diligence. He is aware that we desire a more natural approach to Rhema’s care, even though he does not seem a huge fan, yet our prayer is that he sees that we are actively working her situation. My trust is that he can see our diligence, our vigilance and clearly discern the fact that we would never put her in harms way — ever. As far as cathing goes, we’d dropped our interval to twice a day and he’s asked us to increase it back up to three. We’ will begin that ASAP and have asked him also for a prescription for a different type of cath. It’s so difficult on the road (which we are out 4 days a week with Rhema now to therapies) to cath her. In the back of the van, many times I’ve spilled her urine cup or she’s kicked it over. We’ve heard that there is a cath that has a bag attached to it for ease in clean up so we are hoping to be able to get those. He said that he doubted it would be covered under Rhema’s government insurance, but we are hoping he is wrong. Even having a limited supply of those would help with our road trips with Rhema.
Rhema played so sweetly and interacted with each person who came in to see her. She amazes me with her strength and bravery. Thank you all again for your prayers… we feel them each time.