Getting nervous

I'm now officially nervous about tomorrow. Tomorrow morning we take Jack back to the cardiologist for his repeat echo to check on his heart tumors. It a matter of if we're going to spend the rest of the week relieved and having fun at home (catching up on cooking and swimming at the gym) or if we're going to be scrambling trying to figure out how to get Afinitor, the new drug the FDA approved for brain tumors in TSC kids, paid for. Because using it for heart tumors is an off label use the insurance won't cover it and we got denied for MDCP (Medically Dependent Children's Program), which is a whole other post to itself and which we are appealing so I'm on the phone with doctors offices constantly as it is, so it would cost about $3000 a month. We are hoping that NORD (National Organization for Rare Diseases) will step in and pick up the tab like they did with the ACTH that cost $60,000. Or was it $80,000.... I don't remember.

Anyways, you may need a degree in TSC to understand that last paragraph and all of the acronyms. Basically, we are praying that his heart tumors have shrunk, or at the very least, not grown anymore. My little man has enough to deal with as it is and this mama does too.

God bless us every one

Merry Christmas!

I'll post pictures later but I wanted to wish everyone a Merry Christmas. If yours is 1/2 as good as ours, then you are very lucky.

Last night we were up until 2 am putting together a train table and finishing his book shelf that we started before he was born. He went to bed very late for him because he took a late afternoon nap yesterday and we went out last night but was up at 7:30 this morning, bright and early, ready to see what Santa brought.

It has been a great day though. Round one has come and gone, we got a cruise on Lake Travis and an awesome gift card to Class Cinemas and a hard drive to back-up all the pictures. Not to mention we got accused of stealing my grandmother's car. And Jack of course cleaned up well too.

Next is round 2 when Jonathan's family comes over, and we have lots of left over alcohol from the early crowd so it should be fun! And of course, more presents!

Crappy Anniversary

I'm going to randomly throw pictures from our family photo shoot into this grumpy post to add something fun to look at. Although great pictures deserve a post much better than this long complaint let's face it, sometimes things just aren't fair.

I think the best thing that I can say about our 7th anniversary is that we're all still alive, nothing tragic or traumatic has happened, and thankfully the marriage is fine.


We had big plans to spend our first night away from Jack. I agonized over if we should go or not. My mom is great with him, they love each other and in fact when he gets tired of me he asks (and sometimes screams) for GiGi. At the same time, there is no doubt that Jack has had a rough road and there is a lot to manage when it comes to caring for him. I worried what would happen if he didn't eat all of his dinner thus not getting all of his evening meds. What if he gets picky about food and doesn't eat what I leave for him? The list of worries about his diet, his seizures, his heart, could go on forever. At the same time, Jonathan and I could both use a day away. Even if just one night to have to ourselves and Jack has been pretty stable for a while so we decided to take the plunge and just do it. We weren't going far so we could come back if we had to. For me to not wake up every time Jack rolls over and grab the monitor to see if he's having a seizure and to just get a good nights sleep would make me a new person. Because even though Jack is (mostly) sleeping through the night, I don't know if I ever will after what we've been through.


We were planning on going to the little town of Fredricksburg, about a two hour drive (close enough that we could rush back in an emergency) that always does things up so great for the holidays. I couldn't wait for the lights, the German food, and the vineyards. What more could you ask for?

Ok, I could come up with a few things.


First, Jack started to have a runny nose. It only went down hill from there. I had hopes for quite a while that it would clear up... but it didn't.


And to make a long saga short, because I'm tired and want to sleep, we are all sick with some nasty virus and the trip is off. I had my annual OB visit and internal sonogram (fun fun) where I was told that everything is fine but it does not feel fine at all. I come home to Jack not wanting to finish his dinner and Jonathan about to pull his hair out (his own, not Jack's) and everyone is cranky and miserable.

I think the main reason that I feel sorry for myself and am throwing this pity party is because I do so much. And I know that most mom's do a lot, but a keto mom has 10 times more to worry about, to think about, to plan about and to figure out. I wouldn't trade the diet or what it has done for my child for anything, I would just like to get away for a day and at least pretend that I am just a normal parent.


So we didn't buy each other Christmas gifts or anniversary gifts because we were going away on this great romantic trip and instead we all shared some nasty little flu-like virus. I just want to pout a little more and then go to sleep for about a week but in reality I won't sleep much at all because I'm a mama with a sick baby who also has epilepsy and I wake up every time he makes a peep. Thankfully Jonathan is off for the next two weeks so we can all be cranky and sick together. Sure we can re-schedule our night away, but Fredricksburg won't be the same as it is this time of year and God only knows when it will actually happen because of Jack's health and everything he has going on. We go for his heart echo next week and he may be started on some kind of oral chemotherapy so we know we won't be going anywhere anytime soon if that happens.


But really, I can't whine too much because after all I have a wonderful husband who would swim through shark infested waters to bring me a glass of wine and the most beautiful child in the world.


Now lets pray we're all better by Christmas.

Back on the wagon

I'm so hesitant to take pictures now! I'm still in shock about the hard drive and clinging to 2 small hopes. 1st, Jonathan is going to try and recover some of the pictures off of the cards from the cameras. We'll see what happens. 2nd, I have a friend if Portland who has a guy who might be able to do something with it. We've had 3 professionals tell us that it is toast and there is no way we can get anything off of it, but I haven't quite given up yet.

So, I was debating about taking Jack to see Santa this year. Mostly because I didn't want to pay the $20 to do it. However my mom went on vacation and left me her credit card! It's fun spending someone elses money.

Last week we were at the mall and we rode the train. Lakeline Mall now has a little train that goes around. It's crazy expensive, $5 a person, but Jack LOVED it. He was running after it saying "choo choo tain". At one point he ran through the area where Santa was and no one was there visiting Santa so Jack stopped to tell Santa about the train. It was very cute and after that little encounter I figured he would do pretty well with him. Which of course he did.

One of the things we've been doing is getting Jack to drop a nap. It's been rough. He still wants the other nap. Either that or he goes to bed at night and sleeps for 2 hours and then wakes up wanting to play because he thinks that he just took his 2nd nap. So then he's up until midnight. I'm hoping we all survive this transition. He does fine with 2 naps, but then he sleeps for 4 hours during the day and wakes up early and we can't do anything socially. If he only takes 1 nap we can go to story time at the library, or swimming at the gym, or meet up with our playgroup. It needs to happen, but it's tough on all of us.

So in the mornings we need something to do. We have to get out of the house around 10 or he's laying on the floor with his blanket sucking his thumb. It's pathetic. Today was a trip to the mall to see Santa and it went well. We were the first ones there so we didn't have to wait and Jack had quite a bit to say to him. I have no idea what he was telling him, but he sure did chat a lot. Santa was very entertained. And he was a good Santa too. He had a real beard and let Jack tug on it. He was very friendly and just like what you think Santa should be.

Anyways, here are the pictures I took with my camera.


The one that I bought was goofy. He has one eye almost closed and he's sitting funny. But I'm not sure which of the 3 is the best. They are all a bit goofy.


He didn't sit still for long. Really it was about 2 seconds. This kid is a busy boy and is on the move. Constantly. All. The. Time.


This would have been cute had he actually been looking anywhere near the camera.


This was just cute. It was taken in the play area after our visit with Santa.

A good reason to have a blog

So Wednesday I went out to dinner with a friend. We had a great time but I got home late. I went to check my email before I went to bed and in the middle of it the whole computer just froze. It also sounded funny. I had to force a shut down and when I tried to re-start it, I got nothing.

To make a long story short the hard drive is dead and it is un-recoverable meaning all of my pictures from the last 10 months are gone. I have a few, very few in places like face book, walgreens.com (from having pictures printed) and here on the blog. None of the pictures are full sized, they are all much smaller, but at least I have something.

I'm missing his 1st birthday, baby George, our TS walk, my friend Rita's wedding, the list goes on and on.

I keep telling myself that being home with my baby, spending my days with him and him having his mama to care for him is much MUCH more important than having stuff. In this case the stuff being a large back-up hard drive to avoid things like this happening. Because those hard drives are about $300 and we have medical bills out the wazoo, and a crazy diet that is super expensive, and a child that is growing very quickly. I could work and we could have the money to buy things like a big hard drive, but then I would have pictures that someone else took and I would miss the experience of my baby. At the same time, I can't pretend that I'm not upset by it. I love taking pictures and this blows.

My daddy has already told me that he is getting us a time machine (back up hard drive from Apple) for Christmas so hopefully we'll avoid this in the future.

My Jack-O-Lantern

Jack had a good Halloween!

He didn't quite understand the whole, ring the bell, get a treat thing, but he did have fun socializing and seeing everyone.


And I mean, EVERYONE!



This is him with princess Cassey (and daddy). Cassey always comes out to great us when we go check the mail and is a very sweet little thing.



We hung with the neighbors for a bit and then of course he had to swing. He though it was pretty cool that he got to swing in the dark.



And after his bath he was checking out the loot, which was the first time he was interested in the bucket! While he was eating dinner I went to the neighbors houses and handed out little toys for them to drop in his bucket instead of candy. He would have been fine with collecting candy and then handing it over, I don't think he would have noticed a thing, but it was good practice for us for what to do next year when he is more interested.

All-in-all it was a good evening. It was fun to socialize with the neighbors and this was the first year that we have run out of candy from having so many kids come by. It was super fun though and I know that next year will be even more fun!

set back

Well, Jack had a few seizures.

I still haven't been able to pin down what from. I don't think that it could be from the dried fruit that someone gave him, but I have read that forbidden food can cause seizure up to 10 days after and the first one was only 2 days after. That story is a whole other post but I have never been so livid with another parent. The other thing that changed was his nap schedule. We finally dropped the morning nap and we were able to do things like story time at the library, and play dates. But we're going back to two naps for the time being. Drats! We've also started giving him his meds right before we put him down for bed so that it's closer to 12 hours between doses. That means we have to pin him down and use a syringe to get some of them in, which is no fun at all. We (Jonathan and I ONLY) were planning on going away for 2 nights for our anniversary in December but because of all of this, I'm re-thinking it. I don't think my mom could get the meds in him with the syringe. I wonder if we get all of it in him because as hard as we try, he still manages to spit a little out.

So here are the things we've changed:

• meds 12 hours apart (or very close to it)
  
• added 2nd nap back in
• cut out kool-aid
• NO sleeping in the car

Two of the three seizures happened while he was sleeping in the car seat, which means that we aren't going to let him sleep in the car anymore. Of course that means that we don't go far from home and that we always head back an hour before nap time so that we can get here. And when I think about it some of the seizure that we saw towards the beginning of the diet were also while sleeping in the car. It means that the furthest we go for a long while is the doctors office at Dell Children's. The only exception to that is next weekend when we go to TSC camp (which is already paid for). We are really excited about it and the plan is to travel while he is awake and then attempt to get him to nap there. It really limits what we can do and who we can see but thankfully the weather is great right now and we have some good parks that are close.

Jonathan has been working a ton this week and I've been on the phone all week with the dietitian, the nurse, and our old dietitian trying to figure out what is causing these. I'm also officially done breast feeding so I think my hormones are all over the map, which really doesn't help.

I'm left wondering if this diet is going to be his miracle. We were two months away from starting to wean his meds and now the doc wants to increase them instead. (I'm supposed to check in with him on Monday and I want to ask questions before we do the increase.) I'm feeling like we are out of options, because if this doesn't work we are back to the surgery option which wasn't looking good to begin with. The chances of this being HIS cure is only 30% but after getting seizure free I was hanging my hat on him being in that 30%, now I'm not sure anymore. The good news is that I have heard stories of kids having break through seizures and then returning to no seizures for over a year. I suppose I was just hoping that for once my kid had caught a break.