****this is last weeks post 6/21 that never got posted.  Today I am feeling a little better about some things…******
Last week was an off chemo week, so we had high hopes for lots of fun and getting some things done.

After his last chemo session Kai was not feeling well and ended up with a slight fever. I must be getting used to this because I somehow refrained from calling Dana Farber first thing in the morning (which technically I am supposed to do if he has a fever over 100.3). It was a low grade fever starting at 99.6 and getting up to 100.9 at the highest, but Kai NEVER gets a fever so I knew something was up. A little after noon (yes, waiting till noon was me refraining and NOT overreacting!) I decided to call our wonderful pediatrician instead of rushing out to Boston as I would have in the past. Turns out Kai was starting another ear infection. The next few days were pretty much shot. The fever went away quickly after starting antibiotics and with a few days of extra rest he seemed to be feeling better. However, by today, a week later, he is not doing so well again. Actually he spent pretty much the whole week sleeping, but by today he is outwardly whiny again. No fever, but I have a feeling these antibiotics aren’t going to cut it. His last ear-infection lasted several weeks and took 3 rounds of different antibiotics, the last one of which was IV and an overnight at Children’s. Let’s hope we don’t have a repeat of that event!

So we spent today laying low again. It was too hot to take him out anyway, but it would have been nice to be able to do some therapy or play in the house.  He has just been to tired to do much of anything lately. We did get out for a bit yesterday and enjoyed a little time by the lake with some friends. I took Kai in the water, and while I can’t say he actually enjoyed it, we did tolerate it for a few minutes. At one point he actually put his feet down and was ‘standing’ up better than I have seen in a long time! Overall the trip was pretty tuff for Kai and I. It was bright and sunny which is hard for him. The air was a bit better than the day before, but on these really hazy days he seems to have a harder time breathing. I have had him on the feeding pump a lot just for hydration this week, and being hooked up to that thing is certainly not an easy way to travel or enjoy the outdoors! But above all that our biggest obstacle lately has been Kai’s weakened head control and muscle tone.

I have been concerned about his change in tone for a while now but no one seems to know what to make of it. Some of his doctors say he just needs more therapy, but I really don’t see how I can be doing MORE with him when he can’t even hold his head up most of the time. The only other explanation I get for his regression is that it is related to the chemo. They tell me once he is off chemo he will start to improve. This one is even harder to hear, because he is supposed to be on chemo for the next few years at least!

This week we also got in Kai’s new ‘medical stroller’. This process has also brought about a mix of emotions. A few months ago Kai’s PT suggested we look into some adaptive equipment for Kai, a medical stroller and a medical bath seat. At the time Kai was on the first chemo protocol and was starting to have neuropathy, resulting in him being less stable physically. He was having trouble eating and sitting and reaching, but he could still do all of these things. His PT told me this new chair would help stabilize his body so he could concentrate more on fine motor and other skills without having to work so hard at just holding himself up. She also said we could use it for feeding and it would help make things easier when we were out in public. This all sounded great to me! I couldn’t have been more excited. My back is aching and my arms are tired and he is only getting bigger! Then a few weeks later a vendor rep came and brought the chair out for us to look at. We sat him in it strapped him down and added on a head support. All of a sudden I was worried that this thing was going to be too supportive and maybe even be restricting him…but they assured me it is totally adjustable and can give as much or as little support as Kai needs. The good thing, they said, is that we have these options incase Kai needs more support in the future.

So we ordered it. As the weeks went on I went back and forth from feeling like ‘i don’t think we really need all that just yet’ to feeling like it couldn’t get here fast enough.  A few weeks ago, as Kai’s stability was obviously worsening I said to myself ‘Pat (Kai’s PT) saw something in Kai that I didn’t. She knew we were going to NEED this equipment, and need it soon.’

She was right. We NEED this equipment. By the time it was delivered on monday morning, Kai was no longer able to hold his head up most of the day. He can no longer sit in his Perkin’s chair for more than a few seconds without me being there to help hold his head up. He can barely eat in his highchair and he seems to be having some trouble holding and drinking form his bottle.

So by this week I was very excited for the stroller to get here and change our lives, unfortunately we are still not even able to use it. It came missing a chest harness that Kai now definitely needs. Without is he just falls over. There are also some parts that I am having a hard time adjusting to the correct spot for his size, and overall he just doesn’t look very comfortable in it. It is also pretty heavy and doesn’t really fit in my car.  I have to take it apart and put the base in my trunk and the seat in the back seat next to Kai which doesn’t leave much room for anything else, like groceries or the dog and definitely not another person! I am hoping that once we get the right harness and someone can come help me adjust it I will start to feel better about it. I’m sure it is going to take some getting used to and in the end will be the right thing for Kai, but right now I am pretty discouraged by the whole thing.

***Update 6/26 Today Pat, Kai’s PT came and spent several hours here adjusting his chair.   We are still not able to use it until the harness comes in but I am starting to feel a little better about it.  I also talked to some moms at Perkins group this week about it and they told me it took them a few months to get used to it but now it is a lifesaver….they, however, drive mini van’s…

Somehow we will make it work!