Reality Check...

Sometimes life gets so busy and we move so quickly that we forget things. This school year, I vowed to be a better mom for Ayden's sake. I was going to plan at least one PT session a month for Bub. Yes, for my fellow SN moms this will seem like a gross neglect, but given Ayden's school schedule, my work, and our proximity to quality therapists, weekly appts have never been something we could do without A LOT of extra help. I was NOT going to avoid putting everything off until a school break or day off. If an appt needed scheduled, I was going to do it. So far, we have done pretty well he has already gone to to see Julia each month this school year and will see her in a few weeks again. He has had a round of Botox and a dentist appt too. That has all come with guilt, as subs are hard to come by right now, and I fully expect to use all of my sick days this year.

 Unfortunately, the unexpected has happened a few times this fall. Our pediatrician's office closed in Sept. We have no "quarterback" on the team right now. No one I can call for the next play to send us in the right direction. Someone who knows Bub and all his little quirks. We have been playing with fire a bit and after this past week, we know it needs to be handled. Next Tuesday, we will re-establish with his family doctor and hope for the best moving forward.

Last Tuesday, Bub came off the bus unable to walk. He would not bear weight on his lefty foot. We took him to the ER for x-rays and had the typical ER experience; We left with speculation of a possible sprained ankle and he stayed home with Grandma for a day. He walked ok the next day, and made it through school. Jen, his rec therapist, even took him for a short bit on Thursday being mindful of his injury and not pushing him too hard.

Yesterday, we met our new orthopedic surgeon at Peyton Manning Children's. We hope NOT to have to see him anytime in the near future. However, he was wonderful and we look forward to having him on our reserve list. He checked his hips and he is good! This is a huge relief, and we are thankful. He took additional x-rays, but used the film's we brought from last week (from the ER) to show us the fracture in his foot. He also took some additional images to show us how nicely his fractured leg had healed!?!..Yep, apparently he broke his left leg at some point and we had no idea. In hindsight, as he showed how it changed his ankle structure it made sense to us. After all, his "Funky Foot" had started to really look funkier in the past year or so. We can't really figure out when/where this happened, but we have no plans of stopping Ayden from being a kid. His mobility and independence in the past two years has grown so much. He is more like a typical teenage boy everyday.

Dr. Wilhite said we do need to follow up and get established with an additional doctor to manage his CP better (therapies, botox, etc.). So we will head back to Indy in January to meet with Dr. Carpenter and see what she has to say. 

For now, we are going to get fitted for new orthotics, visit with our neurologist, and of course check in with Julia at PT over Christmas Break.

What we know is Ayden really does have an incredibly high pain tolerance, if he says something hurts, believe him. He has proven this time and time again, after all this is the kid that was teasing and laughing with the nurses and doctors before his appendix was removed. He rarely shows clinical signs of hydro, and has only actually had a fever a handful of times in his life. 

On the brightside he is tolerating the new boot, we have 4 weeks to go with it so he will be done in January. He is not a fan, but it is not really slowing him down. He has a new friend Fred the elephant...Yes, Mom guilt hit hard yesterday, and so I spoiled him. Oh and this...I am going to try to stop feeling guilty about times when everything needs to stop and I need to just be mom, like right now. As this is the view on the couch next to me...

Happy and Healing!

We have been home for over a week now and Ayden is really pretty happy. He sleeps until 10 AM if we let him, but maybe that is the normal 12 yr old on winter break in him. 😁 He still needs the occasional nap on days that he is more active, but I think regaining strength will take time.

We went to his previously scheduled "well child" appt. on the 30th. It was a good follow up and while we don't have all the answers yet, we have a few indicators. His immune panel revealed no residual effects from his vaccines. Basically, his body looks like a nonvaccinated child. So he got a few shots and we will redo the panel in 6 weeks to see how his body responds. None of this is really surprising, afterall our whole special needs journey started with HSV encephalitis at 7 mos. We were reassured that the HSV would not flare again by so many doctors, and then...it did, at age 2. The crazy thing about all of this is Ayden is always asymptomatic until whatever it is gets so severe that it needs immediate action. As a mom it puts me back on high alert, something I have tried to move past for years now. I knew when we left the ER that Friday morning they were wrong, and they were. I have to go back to trusting my gut and be "that mom". 🙄 Our pediatrician reminded me I have his cell, and need to call him. I reminded him he was supposed to be on medical leave at the time. Thankfully, it was his management that Saturday night that got things rolling in the right direction. I would feel better if I knew for sure the antibiotics he is on will work and it won't come back. We don't know the cause of the pnemonia so that doesn't help either. I know it is common not to know, but I am hoping the new chest x-ray next Thursday and follow-up with the surgeon on Friday will show the improvements that put my mind at ease. I plan to get back to work, but Ayden will not go back to school until next Wednesday. His IV antibiotics will finish Tuesday AM and the Home Health will remove the PICC line and discharge him from their care that day. Grandma will be in charge for a few days with Daddy popping in if he can. Unfortunately, this is not over as there are still questions, but clinically my ornery little booger is back, with a smile of course. In fact, to add stress I had to email our neurosurgeon this AM because the doctor and his dad both noted his shunt tubing protruding. It is, but fortunately the Neuro team is not concerned.

They said the weight loss from the hospital and growth spurt probably just have us noting it more than before, but they said they loved his smile in the pictures. 😁 We do too! Thank you again for the prayers, follow messages and texts. We are almost back to our normal. 😉