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.
Keikikai 
So glad to hear Kai is doing well with his blenderized diet – that’s great! It’s wonderful knowing he’s getting such healthy, yummy foods. We had a similar concern with Henry and his car seat – since his tone was so low he couldn’t sit up well enough, but outgrew his infant car seat and had to change. We found the Boulevard 65 model – it’s one of the most supportive we could find, can stay rear facing longer than most, and can accommodate a child longer than many others. This means he can wait before needing to go into a booster seat. Then we saw someone at the Seating & Positioning clinic at our local children’s hospital (Henry needs supportive seating, so we already had the referral) and they helped to add in more support along the sides. It may be different in the States, but in Canada it is illegal to add any additional support behind a child, but it’s ok to add support along the side. So they tucked some extra hard foam along the sides to help stop Henry from sloughing too much. They also added a bit around the head rest, just so his neck didn’t have to bend so far to the side to get support.
He stayed rear facing until about 19 months or so, and then we moved him forward. He was starting to get car sick and moving him forward seemed to help with this. Plus his legs were getting so long he couldn’t straighten them anymore. The new recommendation here is to remain rear facing until 2 years old… but his poor little legs would be so cramped!
Good luck with all the appointments & Happy holidays!
Thanks Shelley,
We ended up with the Graco signature. its great. it can recline both front rear facing and hes been asleep in it in the driveway for 1/2 hour, that never happens! Thanks for the advice 🙂 It is great having your input and experience!
Praying for you to have a peaceful day tomorrow even though you have so much to do. Pray that little Kai will have a good report when you meet with the doctors. Have a blessed day and Christmas to come.
Hey there! Kindra and I just moved Remy up to the “S1 by Safety 1st Easy Fit 65 Convertible Car Seat – Madrid” from BabiesRUs and it’s been pretty good so far. We have a teeny tiny car so we needed to find the most space efficient seat that we could. It’s decent quality and affordable.