Jackson started buddy baseball at school and funny pics

After some goofy miscommunication on the part of the school, Jackson started buddy baseball this week. It was his first game today. I did not go today since the weather was kind of yucky and Zoe really needed a nap, but I will definitely be up there next game for some pics.

He is doing well in general right now. The warmer weather really agrees with him more than the yucky winter stuff. We are going to fly a kite this weekend finally.

Zoe is doing very well going to sleep in her crib. She just rolls over onto her tummy and goes right to sleep like a little angel. The problem is that she does not STAY asleep for very long and wants to be fed sometimes every 2 hours!!! So that is what we are working on now.

Zoe is still quite in love with her doggie. The latest development is that she is now licking the dog!!! Check it out...

Here is how it all starts


And then...




She just loves him so much!

We have some forward progress!

Zoe has been working really hard going forward today! She still goes backwards more but there has definitely been forward motion too. Yay!

Zoe Update

She is still not feeling well but definitely better than she did at the last post. I am also not feeling well so I am guessing we have the same thing.

She has been sleeping in her crib the last few nights. I had slept with her in the futon practically the whole night the night she was feeling really bad, but then it seemed like she expected me to be there all the time again. So I decided to try a modified CIO, with me in the room trying to comfort her from outside the crib. When she got too hysterical I'd nurse her again and then she went right to sleep and I was then able to place her in the crib and leave. Now I can just nurse her and put her down and most of the time she will roll over to her stomach and go right to sleep. Sleeping through the night is a whole 'nother issue though!

She is still not crawling but it should be soon. She is getting more of her body off the ground and is very good at wiggling around on her tummy.

The big news of the day: she signed "milk" to me several times today! I have been doing a little bit of signing with her for probably about a month now. I have been pretty consistent with it. I think I need to learn some more signs now, since I don't really know very many.

Poor baby!!

She is not feeling good. Yesterday was a really hard day for her as you can see. This is how she looked for much of the day. Poor sweetie. : (

I know, I know...

It's been a while since I updated. Sorry. It's been a little crazy.

Last week Jackson had some testing done in Milwaukee. He has an appointment in May with a neurologist that specialized in dysautonomia so they wanted to get the testing done before the appointment. He had to be off most of his meds for the test, everything but his seizure meds. It was kind of brutal. At least we know the meds are actually helping him quite a bit.

The testing went well. He had 2 tests done: a tilt table test and a sweat test. The tilt table test was way shorter than they wanted it to be just because he is too floppy to be kept upright for any amount of time, even strapped to a table. They did say they saw a drop in blood pressure anyway, and that his blood pressure was low to begin with. Since I have never been told anything about low BP before I would guess that it could be because he was off his meds. The sweat test was easy. They tested 4 points on each side of his body. On both sides the result was the same: he did not sweat at all except for a little tiny bit on his knees.

I am not sure what any of this will mean for his treatment. We just have to wait for our appointment and see what the doctor says.

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Zoe is doing ok sleeping in her own room. She slept all the way through the night once, so at least we know it is possible. The futon is working out pretty well. We just need to get a baby fence for when she starts moving.

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We had a very nice day on Sunday. The Easter bunny brought baskets for the kids. Then we went for a little walk at the forest preserve. Lee took Jackson off the trail and as usual he loved it. Here are some pictures...

Off roading...look at that face!





Here are Zoe, Dizzy, and me


Here I am with both kids

Great day at therapy today!

Jackson has a ton of fun at therapy today and also worked really hard. They tried something new which worked out really well. They had him suspended with a harness to a bungee to a zip line. First he was walking along the length of the zip line with the PT and the OT helping him. He did really well with that. With the bungee attached, it was pretty easy for them to help him weight shift and he could get his legs moving pretty well. Then they started knocking over blocks when they got to the end of the zip line.

Then he got to box, which he really liked a lot! The first two videos show him boxing. Also you can see him answer that he wants more when asked.

So then they decided to try something else. Jackson really enjoys rough and tumble play. They have to keep him in motion even when he is not actively doing anything because that helps keep him from puking. They made him tell them to "go" and you can also see him telling them he wants more at the end.

He got so worn out, they had to end a little early. I was very proud of how hard he worked.

These videos were taken with my phone. I have had this phone for nearly a year and I never knew I had video on it until a week ago!

Sleeping in her own room

It's going ok. The first night we tried sleeping her in her crib. It was better than I thought it would be. She woke up 3 times, and all she wanted was to nurse back to sleep. She was mad when I tried to change her diaper.

The second night was not good. She woke up a lot...I don't even know how many times. I couldn't take it anymore and made Lee go in sometime in the early morning. Now Lee is usually pretty good at daddy stuff, but he was not helpful in this instance. When he left her (after only 15 or so minutes!) she was still awake. And so I had to go back in anyway. Grrrr! So I tried the futon after that so I could lie with her and nurse and she seemed to like that better, not to mention I could get some sleep too. I went back to my own bed later and she slept well in her queen sized futon.

The third night was very good. We decided the futon was the way to go. I only had to go in twice after I went to bed. Last night was less good, but still ok. It's a process I guess.

Updates on both kids

Jackson: Today was the last day of school before Spring Break. Hopefully we can think of some fun activities to keep him entertained next week while he is off school. We will probably try to get over to Brookfield Zoo. They have a dinosaur exhibit that he might like. It's hard to know if he will enjoy things beforehand, he is a tough customer.

His neurologist tried a new med for his dysautonomia called propranolol. It is a beta blocker. It did keep the flushing down to minimum, but other than that did not seem to help much so we are tapering off it. He was referred to a new neurologist that specializes in autonomic problems. We are going to be seeing him in mid-May, but he is probably going to get more testing done before that appointment.

Zoe: She is getting very frustrated that she can't crawl yet. But she is really close. So I don't feel it is very safe to keep her in the bed with us anymore, especially in the hours before we go to bed when she is in bed alone. So tonight she is going to be moving into her own room upstairs. I don't think it is going to go over too well, especially the part where she sleeps in the crib. We have a futon up there and I figure we can just leave her on the futon mattress on the floor if necessary as long as the rest of the room is babyproof...which it isn't yet, but will be soon.

Wish us luck tonight. We are going to need it!