Hard to believe summer is almost over and Morgan just turned 11 earlier this week and off to 5th grade in two weeks! We've had a crazy past several weeks with lots of appointments and some fun times also with our annual camping trip up north, a trip to the Jersey shore to visit family filled with waterparks, boardwalk and beach time and celebrating Morgan's 11th Birthday. Trying to fit in as many appointments (even the regular stuff like dentist) as we can before school starts and while we thought a lot of this was routine follow ups there have been a few concerns raised to update on.
We saw endocrynologist earlier this year I don't think I ever updated on, since Morgan's height continues to plot before the 1st percentile, discussed the option of going forward with a growth hormone stimulation test, but she thought unlikely to show a growth hormone deficiency since Morgan's rate of growth is within normal limits. We did a bone age x ray for now and thought the results were interesting: her chronologic age at the time was 10 years + 5 months, Bone age approximates were 8 years + 4 months. So ~2 years behind still on bone age growth. We will just continue to monitor growth and check back in a year or so.
Gillette Children's is where she sees her PMR (Pediatric Rehabilitation Medicine Physician) and orthopedic surgeon. We've had a few follow up appointments there to do another gait analysis following her osteotomy surgery, new AFO fittings to get back to hinged and give her more flexibility, and general CP follow up. They noted some onset of right knee flexion contracture (her joint can't be straightened) and recommendation is to continue stretching, wear her knee immobilizer regularly overnight (we have been really bad about and got fitted for a larger size) and ideally do another round of seriel casting for ~4 weeks- ugh. We see her orthopedic surgeon in a couple of weeks again and know it is recommended to schedule her pin removal near a year post op so one thought we discussed is to see if we can have them cast her right out of surgery since she will have stiches and have to stay out of water for a few weeks anyway. Will make a decision and look at timing at this appointment coming up.
MHealth Fairview is where her new neurosurgeon is and we did have some concerns in May with some consistent headaches she was having so bumped up her annual MRI appointment to May and her symptoms seemed to go away so kept our July follow up with her neurosurgeon. He is not comfortable with where her lateral ventrical size is. Fluid in her head has increased some and might be impacting her negatively (potentially related to some of the behavioral & incontinence things we have seen). This led us to some choices on next steps for testing and decided to do a dye injection into her shunt to check the flow. She was quite nervous about this procedure and in tears until it started and realized she couldn't even feel it! The dye flowed into her ventricals quickly (no obstruction in the catheter) but while laying under observation it did not flow down her tubing to her abdominal cavity until they had her up and moving around for about 30 mins. So its draining slower than they would like which might be just due to pressure level in her head or might be some intermittent blockage in the tubing. We had a remote meeting with her neurosurgeon to discuss next steps and today I took her in to try to turn her shunt setting down with the goal of having it drain more. Well unfortunately after 2 1/2 hours of nurse and doctor trying to reset and a couple of x rays to confirm they could not get her shunt to program to lower setting :(. Odd thing is we thought it was at 120, found out it was at 70 somehow from the x ray (we don't know how long its been like this but potentially since May maybe it didn't reset after MRI and they are trying to get it to 40. Will wait to hear from Neurosurgeon tomorrow but we will likely have to go back in and see if he can get it to program maybe with the Codman rep. Praying we can get this reset and an MRI in a few weeks shows smaller ventricals, want to hang on to this "old" shunt as long as possible!
We've wrapped up summer swimming lessons (still really pushing this to get her swimming independently) and Miracle League (adaptive) Baseball but already started sideline cheer and will start up fall ML Baseball and swimming lessons again in a couple of weeks!
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