Tuesday, December 28, 2010

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.

Saturday, December 25, 2010

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!

Monday, December 20, 2010

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.