Friday, April 23, 2010

Earth Day

Ok, technically Earth Day was yesterday but whatever.

We didn't do anything specific. Jack really wanted to go on a walk, and with the weather so nice we usually go on a long one in the afternoons, but it was raining. He was very upset about that.

But, here is some interesting info on cloth diapering:

Disposable diapers take 500 years to decompose. A baby goes through approximately 2800 diapers a year on average.

Cloth diapering saves the land field, our bank account, and my baby's bum.

We are still loving the cloth diapers. We use 1 disposable at night time and if we go out all day we use them then too just so we don't have to drag around dirty diapers. It's actually an easy thing to do and they are cute too. Look at that little bum!

He's learning to help with his diaper laundry too.

Saturday, April 17, 2010

Green Gate Farm

On Friday my mom and I took Jack to Green Gate Farm. It's an organic farm just east of town. It's a bit of a drive, but well worth it. I would love to do their weekly veggie deal but I just can't justify driving that far every week. However, going there every few weeks is totally worth it.

First, Jack (and my mom) had a blast.

Also, the produce are amazing. We got eggs, ground lamb that was AMAZING, garlic, kale, and a bunch of other stuff that I can't even remember right now.

However the animals were the highlight of the trip. Jack wasn't sure what to think of the pigs.

But he was thrilled with the baby goat. She was about 6 weeks old.

My mom had to feed everything out there, but this little one wanted to be scratched. Until she saw the bottle!

It was a fun trip. And we're going to try to go there at least once a month over the summer to get more veggies and eggs. And the black pig is going to have babies so we need to see those when they come too!

Tuesday, April 13, 2010

Back from Dallas

Over the weekend we went to Dallas to a "town hall meeting" with some of the doctors at the TS clinic.

The hospital was awesome. The doctor was great. And it was wonderful to get to spend some time with some of the other families too. We had lunch with the head neurologist who is the head of the clinic there. He asked about Jack's treatment and he totally agrees with everything that has happened so far.

I kind of wish we would have had Jack on us so that we could have shown him off, because he's that dang cute. But my mom and Ron drove up to take care of him for us so that we didn't have to worry about him at all which was great.

We will probably have Jack become a patient up there so that we can get all of his yearly scans taken care of at once instead of running around Austin for a few weeks. The hospital will also pay for the genetic testing if our insurance won't cover it. I've got to set up an appointment with the genetic counselor to see if we can get approved.

The rest of the weekend was spent socializing, which was great. It had been way too long since we've seen some of those people! We got to see Jesus and Patty and their boys. The boys were so good with Jack, it was adorable. I wish I had a picture but I was too busy actually enjoying an adult conversation.

That night we got to see my friend Kat who moved to Dallas about 2 years ago. Kat and I met in high school. We did high school retreats together and also a few middle school retreats. Then we happen to bump into each other at a college retreat. We also went to UT at the same time and would meet up for lunch on occasion. Anyways, we're old friends. And Daniel happen to be up there for a lacross game. I stared babysitting Daniel when he was 3. He's now 20. I feel old. But it was awesome to see them and hang out. And this is the only picture I took all weekend.

Then Sunday we saw Joe (one of Jonathan's roommates in Dallas) and his wife Kim and their 2.5 kids. Kim is about to have their 3rd in about 6 weeks.

So, the weekend was great. Of course Jack slept in the bed with me and Jonathan ended up on the couch. It's amazing how much space one little body can take up. And the driving wasn't great but we made it.

And Jack continued to have seizures. Yesterday he was put on an additional med. Not what we wanted, but we need to get them stopped. Hopefully this will do the trick. The poor baby was so cranky today. I don't know if he's dizzy or his head hurts or what. He keeps putting his head down on the ground and moaning. Hopefully he will adjust to whatever is going on soon.

Sunday, April 4, 2010

A rough few days

Poor baby Jack. I'm up at midnight because I took a nap with him today and because I'm worried about him.

Yesterday and last night were awful, seizure wise. He had 9 seizures during the day and then 2 at night. Last night he went to bed at his normal time, about 7-ish but then woke up around 11. He didn't cry, so I left him in his crib but I did notice him pulling his hair. Around 11:30 he started to get a little upset so I went in and he didn't calm down or go back to sleep until 2. It was awful. Maybe the hair pulling was because his head hurt? I'm not sure.

Then I heard him at 3. He was doing this pathetic scream but with his eyes closed. That went on and off for about 10 minutes but he never sat up or even opened his eyes so I didn't go in. At 4 he was up again, screaming bloody murder and didn't calm down until 4:30. He had also had a diaper leak and I gave him some tylenol because something was hurting. He did the same thing from 6-6:30.

He is very good at putting himself to sleep. Something we really had to work at after the steroids. It took a long time but it was totally worth it. I've never let him just cry, but I also know his noises really well and if he's not distraught then I give him a few minutes to work things out. Given his medical condition I will NEVER just let him scream. He usually calms down really quickly, but last night was a different story.

This morning I called the neurologist on-call and was super glad it was our Dr. He told us to give Jack a one time boost of the seizure meds and then up the dosage again this evening. This basically maxes out his dose of the meds. The doctor is discouraged and thinks we are going to have to add another med which he doesn't really want to do but he doesn't think that the increase is going to make much of a difference. I do think that this med is keeping the spasms away, it's just not treating the partial seizures.

And then today he had 8 seizures. He cried most of the time we were at my mom's for Easter lunch. Jonathan and I actually ended up eating on the patio because Jack was content splashing in the puddles outside for a bit. We left early, gave him some motrin, and put him down for his nap. He was in a much better mood after the nap but still had a few seizures.

And days like these last few are extremely stressful. I just want my baby to be okay. I didn't sleep hardly at all last night and I'm up after midnight tonight because I just can't sleep. I desperately need sleep because God only knows what tomorrow is going to bring and I deal with all of this better if I'm rested.

And next weekend we are going to Dallas for a town hall meeting with some of the doctors from the TS clinic up there. I need to call and see about getting genetic testing done while we're there and also check to see if the hotel has cribs. Not that ya'll needed to know that, just that if it's written down maybe I won't forget.

Ok, back to trying to sleep. Thankfully all is quiet in Jack's room.

Saturday, April 3, 2010

Bluebonnet Pictures

Last year, when Jack was tiny, I decided that I was going to take pictures of my itty-bitty one in the flowers. And now I think we have a tradition. It's a typical Texas tradition to put your kid in the bluebonnets when they bloom and take a few pictures. I never thought I'd be one to take the "traditional" road when it comes to picture taking, but his birthday falls right when the bluebonnets are blooming so I think his birthday pictures will likely always be in the flowers. Anyways, here was last year.

I can't believe how tiny he was!

This year we went to the Wildflower Center for the first time ever. And when I say the first time, I mean it was the first time I had ever been there. And better yet, I had a friend who was in town from France and she meet us there and I took some pictures of both of our little ones, plus Jack got to spend his birthday with some friends.

I think Jack was trying to bite Dorian and Dorian was trying to hug Jack. We had to keep telling Dorian to be gentle with Jack because he is fascinated with his hair and wants to pull it. I guess Jack though it was pay back time.

The sun was awful and driving me crazy with the lighting but I got a few good ones anyways.

I wasn't totally satisfied with the pictures so on Friday, when we finally had an overcast day, I ran out to Steiner Ranch and snapped a few more. It was a little cooler so I couldn't do just the overalls but I like how they turned out.

He looks like such a little man. I want to know what happened to my baby.