Happy Mother's Day

To all the mother's out there:

Thank you for permanently altering your body to birth an infant that looked more monkey or alien than you would have anticipated. For enduring hemorrhoids, clogged milk ducts, mastitis, and thrush. Thank you for the sleepless nights that morph into interrupted sleep that will last until our children leave the house. For putting your wants, desires, and often fashion and hair styles on the back burner. Thank you for wiping boogers, kissing owies, changing diapers, wiping poopy butts, snuggling hurt feelings, being the rock when another kid hurts your kid and having the restraint to not kill them. For letting go when you needed to, even when it rips your heart out.

Who would have known that you would have become expert artists, cooks, budgeters, nurses, scheduler, cleaner, referee, therapist, fort maker, driver, and doing all of it while constantly multitasking and planning with at least one kid hanging on you every step of the way.

For Mothers Day, know that the only people who truly get it and appreciate what you do are other mothers. So from one mother to another, thank you for all you do.

Go Arizona (and ramdom updates)

First, I must give a huge shout out to Netty and Jameson! Netty is a friend in Arizona and her little boy Jameson is Jack's age. They walked and raised money for Jack at the TSC walk last Saturday. They raised $150 in Jack's name and Arizona raised $30,000 for TSC.


There is still a lot to do for our walk. The Houston people decided to drive to Dallas and walk with us there so that's one less city but more walkers with Jack. But we added one too as Jonathan's sister and brother-in-law and our niece are going to be walking in San Antonio. There isn't an official walk there but they have t-shirts and are helping to fund raise and are going to walk for Jack too. So there is still Colorado, Dallas/San Antonio (on the same day) and Oregon. I think ours in Dallas NEXT WEEKEND is the next one.

I've just about got all of the shirts ordered but as soon as I think I do, more people say that they are coming and I have to add to the order. It's a good problem to have! And we're doing great with the fund raising. If you haven't donated yet, there is still time. http://www.firstgiving.com/jack-a-roo And for those of you who have donated, thank you very much, you're support means a great deal to us.

In other Jack news, he's going through a med change. The lamictal was making him cranky all the time and it wasn't stopping the seizures. He was still have an average of 2/day and he would almost always have one in the morning. It was odd. But today is the second day on the new med and he hasn't had any in the last day and a half!!! While that is very exciting, I want to gouge my ears out with a dull object. The poor kid is miserable. Anytime we mess with the dose of the lamictal he gets fussy. So we're doing that, plus we're adding a new med, and he's teething.

It's hard to sort out what the crying is coming from. And when I say crying I mean red-in-the-face, throw himself on the floor, snot running out of his nose, crying. It's like having a 1-year-old with colic. And it goes from the time he wakes from his morning nap, until he goes to bed at night. It breaks my heart to see him so upset for so much of the day. If we're outside he goes into dull moaning mode which is at least an improvement, but when it's so hot late in the afternoon we can't stay out for long.

I saw a lump in his gums while he was screaming bloody murder and I'm pretty sure that he's getting a molar in. He's had a fever off and on of about 100.4 for over a week. I even took him to the doctor last week to get his ears check and the doc said that everything looked good. So yeah, it's been a rough week. Hopefully it will get better soon. Thankfully the weekend is coming up so that I at least have some help.

And at the beginning of the week my laptop crashed. After buying another hard drive, it's back up and running. I have more space for more pictures now. And yesterday my car exploded. Ok, that may be a tad bit dramatic, but we had to have it towed from the house to the shop. Jack and I met Jonathan at the gym down south for swimming and lunch (the only time Jack wasn't screaming yesterday). After I asked Jonathan if he heard a rattle that I heard. Then on the way home things stared to happen. Long story short, a bit of smoke was coming from under the hood by the time we pulled into the drive way. I'm anxiously awaiting the call from the mechanic and praying that it's not going to cost us an arm and a leg. I love that jeep.

I think that's it for now. I'll have some good zoo pictures to post soon. (The lap top crashing has slowed that down) We drove down to Houston on Monday to meet some friends at the Houston zoo and had a blast and we're driving to San Antonio tomorrow for a zoo trip there. 2 zoo destination trips in one week. It's a lot, but it's been fun!

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.

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!

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.

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.

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.