That weight loss thing

So I lost a good 12 lbs before the boat trip. Speaking of the boat trip, it totally rocked. Jack was having daily seizures when we went and the entire 4 days he didn't have a single one. NOT ONE. I think he's telling us that he wants to live on a boat. Which I'm all for, by the way.

We swam all day, had friends out, had great food, and Jack slept all night. I miss nights when he slept.

The only other thing that really sticks out in my head is that the last day Jack started to get sick. He was actually showing signs of acidosis, which is a VERY bad thing and gone untreated can lead to death. It can happen if his blood ketones (think ketogenic diet here) get too high. He was extremely lethargic, didn't want to eat, didn't want to drink, didn't want to move. Of course we didn't have any apple juice with us, which is what they treat it with, so we had to just get whatever carbs we could into him and get him back on land. He enjoyed his strawberries. We were headed back anyways and he perked up by the time we got home so we didn't have to take him in, but I was worried. But I had the dietitian on the phone in no time, I didn't have our blood ketone testing kit with us, and the nurse called later that day to make sure he was okay. But that is what I'm worried about with him being on the full diet while having surgery too because he likely won't want to eat much at the time.

Anyways, here are some pictures!





Since then both Jonathan and I have struggled with the weight loss. Lets face it, we are extremely stressed. We aren't sleeping much because Jack is on a diet that requires a lot of time and he is waking up at 5 every day, and the closer we get to surgery the more neurotic I get. 5 weeks from today.

We tried this crazy HCG diet that just ended up being a bad idea. We had awful headaches the whole 4 days that we did it, and I went from cooking every bite that one person eats to every bite that 3 people eat. The stress was enough to drive me over the edge and we were both on edge because we weren't eating much. We both lost 5 lbs in those 4 days but it just wasn't worth it.

Now, I am really just trying to keep from gaining weight in the next 5 weeks. If I can do that, I will deal with it after surgery. I would love to exercise, but when it's 100 degrees at 9:00 pm there ain't no getting outside. We quit the gym back in January because we weren't hardly using it and we just couldn't afford it anymore, so there goes our inside place. If I got more sleep, I would go at 5 am when we wake up but running on 5-6 hours of sleep just makes me really cranky.

I know that I need to stop making excuses, and after September is over I will, but until then we are all just trying to survive.

Houston

Okay, so here is a re-cap of our Houston trip.

We went over the 4th of July weekend for a MEG scan. The scan was to see if they could determine if Jack's seizures have a focus point. The reason we are going back down the surgery road is because his seizures were getting worse. The diet has helped a lot, but 5 seizures a week is still way to many.

We started messing with the diet and his meds to see if we could get them to reduce a bit, and they only got worse. He was on a med called Trileptal and he was having about 2 seizures a day. I didn't realize how many he was having until I slept in the same bed with him in Houston. The poor baby!

So we took him off of that med and put him on a different one and we are taking away one that he has been on for 19 months. If you are following all of this, you are doing better than I am! I can hardly keep up anymore. Thankfully the new med we are trying is actually helping. He is in the "honeymoon phase" where he isn't having seizures. When we do find a good med this phase lasts a few weeks to a month or so and then the seizures come back.

Anyways, back to our trip to Houston!

We headed down and ended up on the phone with the hospital for most of the trip trying to get everything set, the arrival time (which changed), and make sure they knew everything about the diet and what he can/can't have. Needless to say I was worried about how things were going to go just by all of the confusion on the phone.

When he wakes us up at 5 am it's all fun and games, but when we wake him up at that time it's the end of the world!


We had the best anesthesiologist ever. He was great with Jack and with us. He took us into the room with the MEG and explained what all was going to happen.


He wanted us there when they put him under and he let me give Jack a nail trimming after he was out, which is the best way to do a toddlers nails! After that he put us in the break room right around the corner from where they were doing the scan. I could stick my head out the door and hear Jack's heart beat from the monitors. He also kept us informed as they were doing things. After the scan was over, we walked with them up to the MRI room where Jack had yet another MRI. We got a text from the doc when it was done so that we could meet them in recovery.


We were there for a total of 9 hours, which made for a very long day, but honestly it was one of the best hospital experiences we've had so far.

That afternoon though, Jack was ready to go go go! We went to the Children's museum and played for a bit. He loved playing with the pretend food.


And I think daddy had just as much fun as Jack did!


The next day we headed down towards Moody Gardens and met some friends at the water park there. Of course our little fish could not have been happier.


We headed home the next day and Jack actually did pretty well in the car. Better then any other trip so far. He screamed a bit, but it wasn't a crying kind of scream. It was a make your eyes bleed and your fillings fall out kind of scream.


And we took a detour on the way home to the farm to visit with family. Jack had some fun with his cousins while we were there.



It was a very long weekend though and I'm glad it's over.

The scan did show that Jack is a surgery candidate. His seizures are coming from his right temporal lobe which is actually a really good thing. Only about a month left before the big day.

Something to look forward to

This week has been difficult, to say the least. But Spring has sprung (and given us a taste of what summer will be like) and we have been enjoying being outside.


In fact, last weekend we even got out on the lake for the 1st time this year. And Lake Travis is my happy place. Has been all my life. And what I love is that it also seems to be Jack's happy place.

Jack LOVES boats and the lake. A few weeks ago we were in the car and the truck next to us was towing a boat. He spotted it and got all excited. He pointed and said, "boat boat boat boat" (which sounds more like "bot") and then made motor boat noises. So cute.

This was last year on the boat.


Those of you who have known us for a while know that we like to take vacations. And we like to do vacations up right! But you also know that we can't really take Jack far from home right now because napping in the car is almost ALWAYS a seizure trigger. It's one of those things that we hope will change with time, but we don't expect it to be anytime soon. I'm guessing we are just going to have to wait until he doesn't need naps anymore, but only time will tell. You can't imagine what we go through to make sure he doesn't sleep in the car. Our whole day revolves around it. It can be frustrating at times but just one of those things you do as a parent. Sometimes, what is best for your child comes above everything else and having the least amount of seizures possible is what we have to do. I'll take being stuck in Austin (not a bad place to be stuck by the way) over causing my child further brain damage. (And we totally appreciate those of you who come to see us because of this!) Thankfully, my mom came up with a way for us to have a vacation that (I think) will work for Jack. And we can't wait!

We will be staying on a house boat on lake Travis for a week. This house boat!


My brother and his family will be coming too so Jack will get to play with his cousins. He LOVES Grace and is twice as big as her even though she's 13 months older.


But the two are very cute together and seem to enjoy each others company.



So, sleeping arrangements are going to be interesting. It's a very large house boat, but we're also going to have 6 adults and 3 children there. But then again Jack has been sleeping great (at night) when we've been away the last 2 times. (I promise an updated post about all of that before too long). I am hoping that we can actually get him to nap in a bed because I think that will be better for him, but it's one of those things that we will play by ear and do what we need to do. So the plan is that if he has seizures, we can simply bring him home to sleep at night and then head back out in the morning, because it would only be about a 20 min drive. It's a brilliant plan really. Plus we have a full kitchen for all of his food and meals. I actually don't know how we would get on a plane with keto anyways. It's just too much to deal with.

So YAY! I can't wait! Not to mention the hot tub on the top deck and the slide off the back of the boat.

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.