Kai has been in great spirits and doing well this week. He did lots of holiday visiting this weekend and has just been all smiles the past few days! He seems to be moving his right hand a little more and he has been a little less shaky since his last acupuncture visit. I’m sure having a few weeks off of chemo is also helping. He has been eating a little bit several times a day. Yesterday his oral diet consisted of a waffle, 1/2 a scrambled egg with cheese, a Christmas cookie, 1/2 of a cresent roll and a few bites of cheese cake… thankfully we are able to also get lots of great fruits, veggies and protien in his tube everyday! Since starting the blended diet he has continued to gain almost 1/2 lb a week!
We had a checkup with his pediatrician yesterday and she was happy to see his growth and felt like he was doing great considering all he is battling. She was very supportive of the blender diet and acupuncture. It is always nice for me to have positive medical support for those things.
Today we have to try and finish up some Christmas crafting and try to figure out his toddler car seat. We are having a hard time finding one that will work for his needs. His therapists suggest he remain ‘rear facing’ since his muscle strength is still not great, but he has outgrown the weight limit on his infant car seat. Since we also have a tiny car, our choices in car seats are somewhat limited….I really hope we can figure this out today!
Kai will have early intervention with Paula and a visit from our volunteer Jen this afternoon. It will be great to have Jen here to play with Kai while I clean out the car and pack up all his stuff for tomorrow!
Tomorrow is sure to be another long and busy day at the hospital. Kai’s first appointment is with audiology at 9am which means we should probably leave here by 6:30…After audiology we will head down to MRI for a 10:00 checkin. Since he is sedated for his MRI he will need to stop eating at midnight tonight. We have been through this before but he was breastfeeding before so he could have breas-tmilk up to four hours before sedation, with formula or food its 8 hours…so we will see how that goes. Audiology will be fun with a cranky hungry baby! O well, I’m sure he’ll do fine.
At 3pm will have an appointment with his team at the brain tumor clinic to review the MRI. Of course we are hoping for a stable scan, NO GROWTH. If all goes well we will have a nice relaxing Christmas then back to chemo next week and do this all (MRI and audiology) again in another 3 months.