Last Thursday Morgan had a MRI and her annual neurosurgery follow up appointment. She was very nervous about the MRI, it has been over 2 years since her last one (a good thing!) and she was actually sedated for that before her SDR surgery so had lots of questions. She started to freak out a bit as we were getting her all strapped in and ear plugs in but was able to calm down after a minute and was great that Children's has a movie playing during it so went by pretty quickly and she was a rockstar!
Following the MRI we met with Dr Petronio, her neurosurgeon, her scans look stable so that is amazing! I have mentioned in the past but her right frontal shunt which goes to her 4th ventricle is really not in her 4th ventricle so at some point we think shifted (into a space that has some CSF behind it) so he suspects this probably isn't even working but so far she hasn't needed it and not going to touch it! They were also able to get both shunts settings reset (has to be done after each MRI) on the 2nd try which is usually a painpoint so went well and no x rays required after to check them! We talked alot about the upcoming years and what to expect if her shunt tubing starts to bother her, sounds typical during growth spurts, and may start getting brittle over time or the scar tissue could become problematic. He also raised her Tibial bone torsion which we continue to watch with Gillette's orthopedic surgeon (she has another follow up in September) and suggested looking at casting her right leg again to gain better calf flexibility, also something we have discussed with Gillette's Rehab doctor but wanted to hold off until after summer and unfortunately I think we will have to look at doing this soon. Overall things are going great medically, she really hasn't been having headaches as much as she used to and we pray we don't have to see him again until next year!
Morgan is having a great and busy summer with a mix of nanny at home, PL Kidsco which she is loving, and weekend fun boating, hanging with friends and family, pools, parks, great weather and more! She was SO excited for the opportunity to join the Shockwaves Adaptive ski squad a couple of times this summer also and had a blast skiing! What an amazing organization we are so fortunate to have nearby for all of these kids!
