My smart kid!!

I am so proud of Jackson! We were doing flashcards of shapes today. He correctly identified the shape 14 of 14 times! He knows rectangle, triangle, square, star, heart, diamond, circle, and oval! Next time I am going to try to get it on video.

Buddy baseball

I finally got to school to see a buddy baseball game! Unfortunately the day was hot and very sunny so Jackson did not enjoy it as much as he could have. Here are some pictures!

He looks almost like he is sleeping in this pic, but he was just really hot. He just shuts down when he is over heated.

Jackson started out as "pitcher".


He started laughing for an unknown reason. I thought it was cute.

Jackson at the bat! Kind of like golfing for him since his chair is so high and the tee is so low.

Running the bases...his buddy did not notice his hat was completely covering his eyes.

And a little baseball fan!

Some great news!

We won a respite weekend! The organization that provides us respite has a contest every 6 months (I think) and we won this time!

We get to stay in a downtown hotel for a weekend in June. On Friday they have a party for all the respite families. On Saturday during the day, we are on our own to do whatever we like. On Saturday evening, they will provide people to watch the kids while Lee and I get to go out all by ourselves and do whatever we want. We will have Jackson's regular respite person so we know we will have someone who knows him and that we trust and also someone else to take care of Zoe.

Is that cool or what!? :)

Zoe's latest

Zoe's latest thing is waving hi and bye. She is getting quite good at it! It is so darn cute and she just loves all the attention she gets for it! She usually has a great big smile on her face as she waves too.

Appointment update

Today Jackson had an appointment with a neurologist who specializes in dysautonomia. I thought it was a good appointment and I am hopeful that some of Jackson's more bothersome symptoms (GI pain/retching/vomiting and heat intolerance)can be improved with the right medications.

We met with the fellow first. We had actually met her before during Jackson's nerve conduction test a few months back and she remembered him, both because of his distinctive name and when she saw him wearing his headphones.

We went over a lot of history stuff such as the initial brain injury and the symptoms he has. Then she went to consult with the attending neurologist and they both came back in to let us know the plan.

First, Jackson is going to start on a new medication (florinef) that will increase the volume of blood. Hopefully that will help with the heat intolerance, rapid heart rate, blood pressure, and perhaps even the GI stuff.

In the meantime, he is going to have an MRI of the brain to compare to his old ones. He has not had one since he was inpatient after his brain injury. The purpose of this is to see if the symptoms are central (ie: from the brain injury, in which case the MRI would be about the same as the old ones) or from something else (in which case the MRI may show changes). He is also going to have blood work and urine testing.

Once the results of the MRI are in, we can decide how aggressive we want to treat it. There are a number of options we have, but we are only going to try one thing at a time...if something goes wonky we want to know what is causing it.

Lee stayed home with Zoe, who was not in a very cooperative napping mood. Maybe she'll sleep extra good tonight.

Cute pics and a video

I love seeing Jackson's face when a favorite song comes on! He has such a joyous expression!




Here is Zoe sitting up playing with a toy. She really prefers to be on her tummy so I don't get to see her sitting too often.


Here is my big girl holding her own bottle


And discovering Lulu the cat...I think she likes her!

Here is a video of Zoe creeping up to play with Jackson's toys. He seemed pretty amused, although I do think he sometimes gets annoyed by it...that's brothers and sisters for ya, I guess!

Great news!

BCBS finally approved a piece of equipment!!! We got the letter yesterday that J's KidWalk gait trainer was approved! Woohoo!!

Finally!!

Zoe's first tooth is finally making an appearance! I was wondering if she was going to be toothless forever! She is 7.5 months old. Jackson's first teeth came in in his 3rd month.

In case you were wondering

Jackson told me today that his favorite show is Mickey Mouse Clubhouse. I did not know that until just now...cool!

Uh-oh!!!

We are so in trouble! Look how good she crawls around on her belly!! She can be very fast when she wants to be too!

Finally got the EEG results

Yes, after several months and several phone calls I actually spoke to Jackson's neurologist today. He said that he did not have any actual electrical seizures during the 72 hours of the test...yay! Also, all the spots we recorded were nothing that he could see on the EEG. But he did have several periods of background spikes in the left temporal area. He said that is very common in people who have/have had seizures and did not seem worried by it. The meds stay the same for now.

Oh Let's Go...Fly a Kite!

We finally purchased a kite! Yay!!! It is a beauty too...T-Rex, baby! It flies nicely, unfortunately we picked the least windy day in recent history to go and try to fly it. We did get it up for a little bit though.

Daddy is working hard so the kite will stay up!

We tried to rig it up so Jackson could hold on to the string himself but the strap we brought was a little too thick and the lack of wind did not help.

So Daddy helped.

I think we picked a great kite!

We put it on his chest harness so he was able to fly it solo for a little bit.


And here is Zoe with Mom. (excuse my hair, I really need a trim!)

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.