Digging Deep

First, here are a few pictures from the hospital.  I don't think much of a re-cap is necessary.  It sucked, that pretty much sums it up.

Those bandages had to be changed way too much!

The look on his face here pretty much says it all.

This is how we slept the whole time and spent most of our days.  I haven't slept in a crib in 30 years and I don't want to again!

This was a prayer blanket made for him by the women at a Catholic church out in Marble Falls.  He still likes to sleep with it.  

This was looking at some cards made for him by a class of students down in Houston.

And looking at a book of Seize Hope pictures that was made for us.  His nurses were awesome! 

We called this a spiked drink.

And on the last day with the grid in, Tuesday, he was finally starting to feel a little better, he wanted to sit on the floor and we even got a few smiles out of him.

 We were prepared for the crappiness of the grid, we were not however prepared for the severe anxiety that would come after the 2nd surgery. 

 

 We all started to go a little crazy in the PICU again.  If you look closely, you can see the swollen little rock star. 

He was VERY excited when he finally got to ride in a wagon!  He rode and rode and rode but Mama had to be there with him.  The next day the only way I could get him to ride in anything was for me to sit in a wheel chair and hold him and then someone could push us.

 

One evening he perked up for about 10 minutes and was telling that dog to stay.  He was giggling and being his normal happy self.  I'm so glad that we saw that, otherwise I would be extremely worried.    

 We did have a lot of visitors in the hospital, which was great.  And some of them cheated at tick-tack-toe.

And others danced with bugs!  Jack of course slept right through his cousins being there and woke up 5 minutes after they left. 

 

We got let go last Saturday, I think mostly because the NP who was there saw how badly Jack was freaking out whenever anyone dressed in scrubs would enter the room or even try to talk to him in the hall.  They all decided that he would actually heal better at home.

We were hoping that the anxiety he was having would ease up a bit after getting home, but sadly we were sorely mistaken.  Up until Thursday he did nothing but sit on me and scream bloody murder.  I can't go to the bathroom without him having a major melt down.

He is now sleeping in our bed with us.  I was sleeping in his bed with him but he would flip out in the middle of the night if he woke up because Daddy wasn't with us.  Then when Daddy was with him he would flip out that I wasn't there.  In the bed with us, we all get more sleep so we are going with it until he adjusts a bit.  

Thursday he finally started to loosen up a little.  I still can't pee without him flipping out but he is finally interested in a few books and the ipad and he isn't screaming non-stop.  He still gets very upset is either Jonathan or I walk out of sight.  The poor child goes into major melt-down and just flips out.  I can't really blame him.  The last time I left him someone cut open his head and scooped out part of his brain, so who could really fault the child for having a little separation anxiety?  I must admit though, I was not at all prepared for this part.

Some of our friends went through this a little over a year ago and they told us to take video of the things that he can do so that if he needs therapy, we could just use the video as references for what he could do.  So I took a lot of video!  I was somewhat prepared for him to have some seizures, for him to lose some skills or speech, but none of that happened!  I did not expect him to have massive anxiety attacks though.  I just wish there was something more we could do for him.  Our 2nd day home from the hospital I yelled at one nurse on the phone and cried to another and finally got the doctor to call me.  He gave us some anxiety meds to give Jack, which helped a little but not much, and said that it was just going to take time.  Like I said, we are having to really just dig deep to get through this. 

And there are very few shirts that I will actually put over his head because they stretch enough!  

Running away

Jonathan and I are running away for the weekend. Ok, really we are just getting away for the weekend, but it feels so weird to be doing something so normal that it seems more like running away.

We are headed to Schlitterbahn tomorrow morning for a good chunk of the day. I think that is actually where we met for the first time when I was 13 and he was 16. We went with a group of his cousins and that was the last time either of us was there. Sadly, only about 1/3 of the park is open because school is back in. We really wanted to go after school was back in to avoid the crowds, we just didn't realize that they wouldn't keep the whole park open when it is still 107 outside. Sorry people, this is NOT fall.

Anyways, after playing at the park we are headed to Fredricksburg where we will be staying for two whole nights! I'm not even sure that I know what to do with myself. Holy crap, I might go nuts.

It is supposed to be extremely hot, so I don't know how much walking around we will do, but our bed and breakfast is just blocks from the main street and I'm sure we will find a vineyard or five to visit. I've never been to one, and I hear they have tastings.

We will head back on Sunday sometime after lunch. Or as long as I can take being away from this little dude.


In the mean time, Jack will be staying with my friend Rita for Friday and Saturday and then my mom is taking over Saturday evening and staying with him until we get back on Sunday. I'm not sure who I should worry more about, Jack, or the people taking care of him. I know that they are both perfectly capable and that Jack will have a blast with them. They know how to handle the diet and his meds, which is no small feat. But Jack has been getting up between 5 and 5:30 for the last 2 months now. He has one more week left of the med, and I hear it takes about 2 weeks after for them to fully adjust, but I don't think he is going to. He is just so used to getting up at that time and I don't see it changing ANYTIME soon. So yeah, Rita and Gigi are in for some early mornings... AND WE GET TO SLEEP IN!!!!!

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.

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

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.

a dose of cuteness

Jack is quickly outgrowing all of his clothes. He needs a 3T in the waist and a 12 month in the length for pants. It's crazy. Thankfully I've managed to find him some pants with stretchy waist bands. As you can see, they are long but oh so cute and they fit his big cloth diaper bum well.

I sure hope that he slows down on the growing soon. My mom took us shopping and we now have some 2T things for when the weather gets colder and I really hope that he doesn't need 3T for the end of the winter. Last winter was long, too long and too cold so I'm hoping this one is a little kinder.


This is what he does when we say "touch down" and then he claps. It is very cute.



My house may be messy, but my baby is happy!

You just thought I was going to make a post without talking about the diet... NOT. Anyways, I got to talk about the ketogenic diet on national radio yesterday. I listened to it today and I didn't sound like a complete idiot, phew.

And last night Jack threw up. It was awful. He did his normal midnight wake up thing but instead of taking a few sips of water and going back to sleep he barfed everywhere. He was then up until 2 am. He also ate very little solid food today and did mostly his cream with breast milk combo. He finally ate a few bites of a keto cookie for dinner and then some avocado.

I'm planning on making him a "milk shake" in the morning for breakfast and sticking to all in one meals for another day.