Big boy bed!

So let me just state for the record, that I was right about him needing a bigger bed. Jack is sleeping SOOOOO much better now. When he was still in his crib, he was waking up several times a night and would sometimes be up for over 3 hours at a time. We would have to go in 2-3 times a night minimum. It was killing me, especially being pregnant and already being exhausted from that. But for over a week now, we haven't had to go in. He has been up very early a few days, like 5 am early, but I would much rather get 5 or 6 straight hours of sleep than be up 3 times a night. The "little" guy just needed room to stretch out.

So, here is him in his bed!


He LOVES it. From the second they put it up, he was all over it. I put him to nap in his crib, which was still up, and he did well. That night we were planning on putting him in the crib again, just so he could get used to it being there, and he climbed right into his big bed and went to sleep. It was the easiest bed time in months.


The first 2 naps in the new bed took a while to get him to sleep. But now I can lay him down and leave and he will eventually go to sleep without fussing much. And bed time is much easier too. He was so ready to be a big boy. *sniff sniff* Because lets face it, I was ready to leave him in that crib until he was 8 if he was sleeping well in it.

And I really like the furniture too. It's very dark, black actually, and we (AKA: I) need to pain a few shelves. We also still need to move his seizure cam and get it set up to record again. But overall, it's awesome.


And yeah, Jack though it was pretty funny that daddy can fly.

Thank God for better sleep.

And me... I have had one heck of a time recovering. I was told 1-2 days and I'd be back to normal. 1-2 days my ass. It's been 2.5 weeks and I'm still working on it. I won't go into the gory details of one afternoon last week, but lets just say I had to call Jonathan home shorty after he got to work and it ended in an emergency trip to the OB's office to make sure that I wasn't hemorrhaging. Then we had Jack's birthday party, which turned out well (pictures to follow eventually). And then my back went out completely.

Staying at home with a 35 lb toddler who doesn't always follow directions well with a back that doesn't cooperate, hasn't been easy. From what I've read, this could very well be related to the surgery and my body trying to get back to "normal" or how my body is just reacting to stress. I don't know and honestly I don't really care, I just want it fixed. I've gone to the chiropractor twice and had a therapeutic massage which was extremely painful, but I'm really hoping that I feel better in the morning.

Oh, and phantom kicks while my uterus goes back to it's normal size are just cruel.

24 months

Dear baby boy,

In a few hours you will officially be 24 months old. As I sit here typing this, I remember this time 2 years ago, timing contractions on my iphone. I had been having contraction for 5 hours and waited another 4 to go to the hospital only to be sent home because they told me I "wasn't in real labor". When the doctor told me that I wanted to punch him in the face. Not "real" labor? But I settled for waking him up at 5 am to scream at him that I need drugs NOW! Your birth will always be one of my favorite memories, it is what made us a family. You will never live down that it took 27 hours though. But it was when I knew I had done what I was always supposed to do... become a mommy.

We have been through a lot in the last 2 years. The medical stuff has added a lot of un-expected stress, but we continue to remind ourselves how lucky we are. You continue to amaze your doctors! Your neurologist thinks you are the cutest thing ever, and that is a medical opinion. He actually said at our last visit, "there is NOTHING wrong with this child" and he said it while laughing at how you were flirting will all of the females in the room.

And speaking of flirting, you are clearly a ladies man. It's really funny how you still gravitate towards the ladies. You are also the most polite little boy I have ever met. You know how and when to say "please" and "thank you" and you also blow kisses at the appropriate times too.

You of course have your opinions on things and do throw the occasional tantrum, but lets face it, you really are a toddler now. I can't deny it any longer, as much as I would like to.

But your little personality is really coming out and it is awesome! Your dad and I were talking the other day about how you are a really good mix of the two of us. I think you got the best of both of us which is more than we could have ever asked. You are hysterical and KNOW when you are funny, which makes it even funnier. You are very much a boy and you laugh when anyone burps or farts, which again is hysterical and makes us laugh which makes you laugh even more. You totally get that from your father! You can also be very stubborn and determined, which you get from me, and I hope that it actually aids you in dealing with all of the things in life that you are going to have to deal with. You have this great desire to explore and go at thing full force, but you are careful (most of the time) with things like climbing and steps and aware of what might hurt. Accept when you're around a swimming pool, then you just jump in and start swimming. You might have gotten that from me too :-)

Your vocabulary continues to grow on a daily basis and we are so glad that you have finally decided to talk! I love it when you see something and say, "WOW!" It's so cute. You also like to say, "tickle tickle tickle" when we take your socks off. People continue to tell us how cute you are. Your hair is amazing, your eyes are beautiful, and you are so friendly and sweet that everyone just falls in love with you. I kind of expect for people to fall for babies like that, but they are still falling all over you. And I have a feeling, that they will continue to and at some point I will be worried about it instead of thinking it's cute. Right now it's very cute for you to kiss all the girls at playgroup, but when you come home bragging that you kissed all the girls in kindergarten.... that might be another story.

So my dear boy, as we approach the hour of your birth, I may be a little weepy but it's only because of how much I love you. Because of how much you amaze me. Because of how perfect you are. Because of how much you have taught me and how you made us a family. Every day I am glad to be your mom. Every day is a new adventure and it's so great to watch you discover new things, even if it does start a little earlier than I think it should. To watch you learn how to communicate and to watch you interact with the world around you is what I look forward to every day. You make life so much fun little guy and I am thankful every day that I have you and that you are exactly who you are.

Happy Birthday Sweet Pea!
Love,
Mama

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.

just to get this post over with

We went on Friday for our 12 week appointment and NT scan on #2. Turns out baby's heart stopped around 8 weeks and I haven't naturally miscarried.

In fact, I haven't had any signs of a miscarriage. I still feel VERY pregnant, which really suck because I've been "pregnant" for a month now with a baby without a heart beat.

After our 1st ultrasound I was slightly worried because I KNEW our dates were right and baby was measuring 5 days behind. But the doc said everything was fine and that because we saw a strong heart beat there was only about a 2% chance of having a miscarriage, so I didn't worry. Plus the ultra sound even says "+/- 5 days". He also told me that I was approaching the week where symptoms are the worst and that they should ease up a bit after my 7th week, so about 1/2 way through my 8th week when the nausea let up just a tad, I did wonder if something was going on but the doc said that it would happen. I almost called and asked for a sono then, but I knew they would have thought I was crazy.

Other than those things though, I'm still exhausted, still have to take nausea meds once or twice a day, still puke on occasion, have to take tums at night for heart burn, still gag on my toothbrush, and still have to get up 3x a night to pee. Knowing that I've been going through this for a month for no purpose, really suck.

I was finally starting to get excited about having another baby. I was so ready to be out of my 1st trimester, which if you go by my original dates, I am. I was starting to show a little because even though the baby stopped growing, the sac continued to grow. My body still clearly thinks that I'm still pregnant.

The nurse said that it was probably a chromosomal abnormality of some kind, T16 being the most common. And God knows that I don't need another special needs child, but that doesn't mean that I would love a special needs child any less or send her back. Either way, it just sucks. Before all of this our little family of 3 was perfect. Then we had a surprise, adjusted to it, and have now lost it and it just feels like our family is incomplete. Someone is clearly missing. That doesn't mean I want to try again right away or even anytime soon because the thought of being in my 1st trimester for 6 months out of a year makes me want to throw something.

Given that we were at the office on a Friday afternoon, they couldn't get me in for a D&C until Monday morning. The nurse said we could wait and let my body take care of it on it's own but because of how far along I was it would be a very painful and long process. And my body has had a month to do something on it's own and it hasn't, so we scheduled the procedure. The only good thing about it is that my doctor will be back in town and there to do it and at least it will be over with.

I really just want Monday to be over with.

I'm upset of course, I don't want to talk to anyone, and I go back and forth between being okay and being in tears. I just want Monday to be over with.

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.

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.

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.

Mama