Better nights

Thankfully it was just that one day and night that Zoe was so cranky. Things are back to normal crankiness now!

Thanksgiving was nice. We have Lee's parents in town until Monday. They were so happy to meet their granddaughter for the first time.

Jackson was a super-trooper at Thanksgiving dinner. We asked him if he wanted to sit with us at the table for Thanksgiving dinner (sitting up is not the most comfortable position for him and he eats nothing orally so we leave it up to him) and he said yes. He was very interested in watching us eat so we asked him if he wanted to smell some of the food. Sometimes he says yes when we ask and sometimes not but today he said yes. As he was smelling he opened his mouth so we asked him if he wanted to taste a few things and he did! That hardly ever happens. So we gave him tiny tastes of cranberry, green beans and potatos. He did not like it at all, as expected. But it was really cool that he wanted to try.

What is going on?

All yesterday and last night and part of this morning Zoe was super cranky. Not wanting to sleep and not wanting to eat either. In fact, she would throw a fit every time she was offered the breast. Usually she sleeps pretty well at night but last night we were up with her many times. We even tried giving her formula today in hopes that she would take that, but of course she wouldn't. (We have been trying and trying to get her to take a bottle with expressed breast milk but she only likes it straight from mom.)

Thankfully, she has slept most of the day today and she is nursing a bit better. I'm keeping my fingers crossed for a better night too.

Lookie what we finally got!

After nearly 7 months Jackson's fancy new lift was delivered today!! It is so NICE!!!!! And so much smaller and lighter than what we were using before.

Look how cute and small it is!


I think I can hook it up better next time so his head doesn't flop around so much,


He likes it!


Side view

I'm so proud of him!

We had asked our PT for a trial of a new gait trainer that came out called the KidWalk. When we got to therapy today, it was there waiting for him. I really like it!

First the therapists tried him in it with his TLSO and knee immobilizers. It was the smaller size Kidwalk and the thing that goes around his waist would not fit around his TLSO. So they took off his TLSO and put him in it. He seemed really comfortable in it, which is huge for him. He wasn't even drooly or bubbly and he was up for most of an hour.

I liked that it can lean backwards a little bit, that is what Jackson needs. Once they got him in it (which is a bit tricky) they took off his knee immobilizers. He was able to take small steps with his right foot! He was not able to get that left one moving though. But for his first time in it, I thought it was great. I could tell he was trying very hard too. I was proud of him!

I took a couple pics with my phone. If I knew they were going to be doing that today I would have brought a real camera. Hopefully it will still be there next week.

This was as they were still trying to get it adjusted for him.

Jackson's appointments Friday

First we saw dental. Jackson's teeth look really good despite all the grinding he does. She said because he is 100% tube fed he is at lower risk for cavities but higher risk for tartar. No cavities that she can see and even the tartar was not too bad. He has 4 loose teeth!!! I only knew about 2 of them. And his 6 year molars are coming in. She didn't scrape his teeth too much since he is about to lose so many teeth anyway. She said we do a great job with his teeth.

As for the grinding, she said it's really common in kids with CP. She said that she was recommending not doing anything about it at this time even though they are really ground down. The nerves of the teeth move down as the grinding goes farther down, kind of protecting themselves. And he would not be able to grind fast enough to get to the nerve. She could make a guard for him to wear but she fears it will be a hazard for aspiration of saliva since his swallow is not the best. I may ask for one anyway next time though. I really don't want his adult teeth all ground down like his baby teeth are.

Then we went to see palliative. He was really interested in the dysautonomia symptoms and had us describe them in detail. No one has ever really wanted to do anything about it before, so this is very exciting for me. He is going to consult with a neurologist who specializes in this. (Tried to page her but she wasn't answering.) So he is going to call us after he talks with her and also maybe another adult neuro too. He also said he might do a holter monitor to see what his heart is doing. Hopefully this guy will be able to help Jackson's GI pain as well as some of the other yucky stuff he has going on. Keep your finger crossed!

We travel to Milwaukee for most of his specialists, he just gets better care there. Usually it's just me and Jackson. I tried to get Lee to stay with Zoe but she refuses to take a bottle. So we all went together because both kids with me alone is too much. Zoe did well until the end of the ride home...man can that kid wail!!

Update on Zoe and halloween pics

Zoe is geting HUGE! She is mellowing out somewhat, but she is still a pretty fussy girl. I think she has a lot of gas causing her discomfort sometimes, poor thing. She does not like to lie down flat, she much prefers to be propped up or be upright in a carrier. She loves taking a warm bath, it's an easy way to calm her down. Unfortunately she does not like to get out of the bath so she will usually start crying then. She does not sleep enough during the day and she will only sleep at night if she is with Mom. Her head control is pretty amazing for 6 weeks. And she is smiling more and more, it is so sweet! Here is one of her early smiles caught on film.


For halloween, Jackson wanted to be a fire fighter this year. His hat wasn't quite working out on his costume because of the way his wheelchair headrest is but we did our best to modify the hat so it sort of stayed on his head.

Waiting for the bus




Getting his face painted at school. He looks totally thrilled, don't you think? We put his jacket on backwards (his choice) so we didn't have to lift him up out of his chair.


Zoe did not have a costume, but our friends gave her a very cool halloween outfit to wear.

Letter from the principal