Tuesday, February 22, 2011

tests we will be doing on the wee one

The chances of Jack having TSC were 1 in 6,000. The chances of a baby having downs syndrom is 1 in 750. Go figure.

But even with those stats and both Jonathan and I testing negative for TSC the chances of having another baby with TSC increases to 1-3% because of Jack, that is approximately 1 in 100 to 1 in 33. And 33 is a MUCH smaller number than 6,000.

The only way to know for sure before the baby is born is to do an amnio. The amnio does carry some risks and we wouldn't terminate either way so we are passing on that test. I thought about it for a while, but the idea of losing a healthy baby because of running a test just isn't worth it to me.

Our doc does 2 high level ultrasounds, one at 12 weeks and one at 24. We will be focusing a lot on the baby's heart because if TSC is diagnosed before birth it is because of heart tumors. We are also adding an additional level 2 ultrasound at 32 weeks. After she arrives we will be borrowing the woods lamp that is in Dr. Kane's office (because of Jack). I know exactly what shelf it sits on and I will be going over this baby's skin very carefully. If both of those come back clear then we will wait a few months to take the baby to Dallas and have a blood test done. Honestly, I won't be completely at ease until I see that blood test. My OB isn't worried and is mostly doing the extra ultrasound to put my mind at ease. At the same time, if she does have heart tumors before birth then we need to know about them so that we can make sure that little heart is okay after birth.

Thankfully I know what infantile spasms look like and have an in to the neurologists so if baby does start having seizures, they will be treated right away.

And yes, I did refer to the baby as "she". I think it's a girl. It's just my gut feeling and I could be completely wrong. Jonathan thinks it's a boy. If we go off of who is usually right, I win :-) We'll know sometime in April.

Sunday, February 20, 2011

Round 2

I've been debating about how to write this blog post for a while now. I've even started it a few times and it just never looks right.

So, here it is. A few weeks ago we were surprised to find out that I'm pregnant. We are still somewhat in shock, but it is wearing off. I'm horribly sick and have morning sickness morning, noon, and night. And I'm exhausted. I now nap every day with Jack and on the rare occasion that I don't get to nap I can hardly hold my head up for the rest of the day.

I had my 1st appointment on Monday and everything looked good. EDD is October 2nd. Baby has a strong heart beat and there is only ONE, thank God.

I'm feeling sick and overwhelmed mostly. I really don't know how I'm going to be able to take care of Jack and all of his needs plus a newborn. EEK! Thankfully, a lot can change in 6 months.

Jack hasn't been sleeping well, which doesn't help matters. We are debating about switching him to a big boy bed in hopes that it helps. But I'm worried it's just going to make it worse. Being up 1-5 times a night doesn't help the whole tired thing either.

Ok, I'm headed to bed now. The 1st sono isn't much of anything to look at, so I'm not going to post it, but we have our 12 week sono in a few weeks and should have some good pictures from that.

Friday, February 4, 2011

22 months

Dear Jack,

A few days ago you turned 22 months old. And while I am always amazed at how quickly time passes I am painfully aware that your 2nd birthday is only 2 months away and that before long you will be a full fledged toddler. Holy crap!

We have had a lot of doctor's appointments this month, the most important being with the neurologist. Because you are still having some seizures, we are increasing your ratio on the diet which means more fat. How is that possible, one might ask. Well, it's been an adjustment. And around the same time you decided that you were going to fight about eating at every one of your meals. I can't even count the number of times that I've had to leave the room to calm down enough to come back and encourage you to eat. And I've even had to literally force-feed you a few time, which is awful. For both of us.

I spent about 8 hours of cooking over 2 days to re-stock the freezer and have a bit in there to pull from. Right after doing that you decided that you don't want ANY of those meals. You now refuse to eat eggs too, which used to be your all-time favorite and our go-to food if we couldn't get anything down you. For the most part you have been a very good eater, but the last few weeks have been challenging to say the least. You have also had a runny nose for the last 3 weeks so it's impossible to tell if the lack of interest in eating is because of the snot or the ratio change.

But that being said, I wouldn't trade it for anything. Ok, a cure, I'd trade it for that. Anyways, it has helped you so much and our lives are very normal most of the time. Sure it involves a lot of cooking and planning and thinking but it has given us such a reduction is seizures that we can go to playgroup, we can have a trip to the park without worrying that you're going to fall because of a seizure, and it had reduced the worry to the point that we can plan and do normal kid things. If we can get these last few ironed out, I would be the happiest mommy on the planet.

And I don't regret any of it for a second. I sometimes worry that people will look at our struggles and think that we somehow love you less, or wish you were different. Knowing what we could be dealing with, you are nothing short of a living, breathing, miracle. I haven't held back in sharing what we're going through because it might help others and because there is no point in hiding the challenges or pretending that we don't worry. But our love for you has never faltered baby boy. In fact, I think that it is because we love you so much that we worry and struggle sometimes. But because of you, I am a better person. Because of TSC I have so much more compassion then I ever did before. I certainly never knew how strong I was until you came along. The love of a mother is an amazingly strong force, even a little scary at times and I never knew I was capable of loving someone like that.

You are the sweetest child I know. You love to give hugs, blow kisses, say thank you, help put your dishes away after eating and sometimes you even help clean up your toys. You can light up a room and make anyone smile. You are the biggest flirt on the planet and always try your hardest to get the attention of any girl around. You always do something to melt my heart and even when I'm frustrated with your toddler ways, you are the cutest thing on the planet.

We have started taking swimming lessons again and are having a blast. There are only 2 other kids in the class and you are a rock star. You jump in and swim while holding your breath for 4 seconds without thinking it's a big deal at all. You start to sing the song before the instructor even does and you are a back float champion. They have never seen a little boy so comfortable and content to float on his back in the water like you do.

You saw snow yesterday for the 2nd time and you weren't too impressed. All you wanted to do was swing but your swing was filled with snow and when you shook your glove off to clean out the swing you cried because it was cold.

The other thing you are really into doing is dancing. Man, can you boogie. We don't watch TV often, but sometimes I put on Veggie Tales just to watch you do this to the opening music.

I love you my sweet monkey, more than you will ever know.