Kai did surprisingly well after his treatment last week.
His cold cleared up and no vomiting this week! He is still pretty sleepy and has started tugging at his ear again, but hopefully it is just the teething. A BUNCH more teeth are coming in!
Since he was feeling well we were able to keep all our appointments and plans, which made for a busy week as usual!
On friday we had our first consult with physical therapy through early intervention. They agree that it is time to expand Kai’s therapies to include PT and OT as often as possible. We are also hoping to get into their water therapy program soon!
Physical therapy will be working with us on getting some adaptive equipment that may be useful for Kai. Right now we are talking about a ‘medical stroller’ to help give Kai more support when out and about as well as another place he can sit, play, eat, relax in the house. As Kai is getting bigger it is getting harder for me to be carrying him ALL of the time and his current stroller (which i have to say we do love) isn’t always conducive to his needs anymore. The seat in the new stroller detaches and can be put on a separate wheeling base for in the house. It will also have a tray that he can use to play or eat from. It will be a great tool for us when we are out at a restaurant or visiting at someones house. It will grow with him for many years and accommodate a wide variety of needs he may have in the future. the PT is having a vendor rep come and bring a few out for us to try to see what works best for us.
Of course our goal is still to get him walking so this chair will only be part of his day. We will still be doing just as much therapy, floor play, tummy time, kneeling, weight bearing, etc. In fact, this morning after playing in his activity chair from Perkins he was able to stand and bear weight for a few minutes at the window cill, with our assistance of course. It seems being in a seated position like that helps him transition to a stand much more easily! It was very encouraging to see how well he was standing today, especially after spending all weekend thinking about this new chair…
It is a good reminder that so much of Kai’s progress (or lack there of) really is tied to fatigue and the affects of chemo. When he is feeling well he surprises me all day with the things he can do!
Thankfully we have an amazing team of professionals to help us figure this all out!
I am sad to say that we had our last appointment with one of these amazing people today.
Kai’s acupuncturist Jacqueline will be starting medical school in the fall and today was our last day with her. She has taught us so much and her work on Kai has helped keep his body in better balance and better able to deal with the affects of chemo. I just have have to say that since we have been seeing her Kai has not needed one blood transfusion! She is so knowledgeable, gentle and caring and is going to make a wonderful doctor.
Jacqueline, we will miss seeing you every week but we are so excited for all of the people you will be able to help in the future!
Who knows maybe we will see you in pediatrics some day 😉
We will be meeting with a new practitioner next week to resume Kai’s acupuncture treatment. I am sure she will be great, but it will not be the same.
This week we also met Christy, a Reiki Master, who came to our house to teach us about Reiki. It was another amazing offering by Lucy’s Love Bus!
Christy spent a few hours with Kai, Mark and I teaching us about the history and Practice of Reiki. She then did an attunement for all of us.
“You ‘learn’ Reiki by receiving Reiki attunements which enhance your ability to act as a conduit for the universal life force”
It was a nice thing to do as a family and is one more thing we can practice to help keep Kai, and all of us, strong.
I also want to say a big thanks to our friends Lester & Tilly for coming down to visit us this weekend!
It was great to have you and it had been WAY to long! Can’t wait to do it again sometime soon.
I thought by this stage in Kai’s life it would be getting easier to travel a bit and start visiting our friends and family again, but it looks like it’s going to be a while before we get to that point. I am thankful that we live in a house with space for visitors and I am thankfull that our friends and family have been so willing to come to us. It means a lot and we love seeing you!
Tomorrow is the last treatment of this cycle and then we are on the two week chemo vacation again!
I am so relieved Kai is feeling better and I am hopeful that we will have a nice break this time around.