New features

There are some new tabs at the top of the blog!  I'm still working on some of them, like I want to add a video of me making a keto recipe, but that will come in time.  There is also info about Jack's special needs trust and if you are new to the blog you should read they "Jack's story" tab.  

Feel free to leave a comment on this post to make suggestions! 

Poor Sick Monkey! (and TSC camp)

 We went to TSC camp the first weekend in November and Jack got sick there.  Saturday morning he threw up his dinner from the previous night by gagging on one of his supplyments.  We didn't think too much of it and have been surprised that he even willingly takes the supplyment because of how nasty it smells so we passed it off as that. 

We had a good time that day.  Jack played a lot.  Here are a few pictures.  (And a few were stolen from a friends facebook page :-)  

We are on the far right, sitting down. 

 

Jack loved watching the archery, so we stayed there for a while.  And my mom decided to make a bet that whomever hit a card (they had playing cards pinned to the target) would get dinner cooked for them.  I hit 2 so she owes me dinner!

He didn't eat breakfast well though and refused lunch.  I got him down for a nap and then Jonathan and I went to the parent meeting.  About 1/2 way through the meeting I got a text from Ron (my mom's boyfriend) that said "Jack is throwing up, we need you".  So of course I ran back to our cabin.  By the time I got there they had him cleaned off and the laundry in the washer.  We gave him a bath in the sink and after you could tell that he had a fever.  I called the on-call doc at our pedi's office because I wasn't sure where in the camp his neurologist was, and this was clearly not a neuro issue anyways.  He had some other strange things going on but our first concern was that he might have a blockage somewhere because of how the food was coming back up in whole chunks.  Thankfully his belly was soft and he was acting mostly normal.  But she still wanted us to keep a very close eye on him.  We did go find his neurologist and his nurse, who were all there, and once we talked we all decided it was best if we packed up and headed home. 

We didn't want to leave camp early because it's something that we look forward to every year, but we didn't want to get anyone else sick and if Jonathan and I were going to get sick, being at home would be much easier!  Plus if we ended up having to take Jack somewhere we wouldn't have wanted a 3 hour drive to get back to our local hospital.  His fever did spike in the middle of the night, he didn't eat for 2 days (and if you aren't on keto, it's not as big a deal, but I had to syringe apple juice into him so that he didn't have to go to the hospital for an IV with some sugars because the body does need SOME carbs) then he had diarrhea for a week. 

I was told that he wasn't really contagious and as long as we washed our hands he would be fine, so one day last week I took him to the mall to get out of the house.  We rode the train, which he loves, and saw that Santa was there already.  Jack ran as fast as his little legs would let him to Santa.  It was really cute.  We chatted with him for a bit because no one else was there and we gave him some Seize Hope bracelets which he still uses to hold his gloves on. 

While we were there Jack did this strange thing where his eyes would get really big and he would go stiff for about 10 seconds.  Of course my first though was that it was a seizure and it really worried me.  But we decided to chalk it up to stomach cramps.  It happened 4 times that day and one the next.  He got better though and then everything seemed fine. 

Of course now he has a cough and a runny nose.  Blah!  I'm not a huge fan of this time of year because of this.  For most kids a runny nose isn't a big deal but previously, Jack being sick was big seizure trigger for him.  He would always have more seizure when he was sick.  Then yesterday I had him at the mall again and he was riding this tiny carousel and I KNOW that he had a seizure.  There is no doubt that it was and it took everything in my not to burst into tear right there.  He knew it was happening and he was scared.  It was pretty short, only about 30 seconds, but it was still probably the most crushing one.  It doesn't mean that the surgery didn't work.  They give 6 months for the brain to heal from surgery before they really start counting, but they still ask if he's having seizures and it is not at all a good sign.  Needless to say I had a few drinks last night. 

Freedom in Food

We have been floundering a bit to figure out this new Modified Atkins Diet (MAD for short).  The nutritionist has been slightly helpful but the biggest part of it is simply logistics.  We have to make sure we always have food in the fridge that we can eat (it's extremely difficult for me to cook when I'm the only one home with him because he still wants to be very close to me), and also at least a snack in my bag.  I have discovered some great nut packets that only have 3g of carbs that I can stick in there for emergency situations.

On keto, Jack was getting about 12g of carbs a day.  Now on MAD he can have 20-25 a day!  That is a huge difference.  We also no longer have to restrict his protein intake so he can have as much as he wants.  The other night he kept saying "beef" for the pot of stew I made!  I've also done fried chicken and made peanut butter cups.  All of the recipes are modified, of course, but my keto experience has helped in the creating of yummy low-carb food. 

Jonathan and I are also following a low carb diet now too.  We want to lose some weight and get in shape so I have re-joined the gym and actually have a meeting with a personal trainer this afternoon.  I only need about 8 more cups of coffee before I'm ready because Jack woke up at 4:45.  Anyways, Jonathan and I now don't eat anything in front of Jack that he can't have.  With the acceptation of coffee that is.  Jonathan usually doesn't leave for work until 8 so we all sit down to breakfast together.  Usually it's eggs and sausage or bacon with either acorn squash or strawberries.  Jack just gets extra butter and cream in his eggs.  But on occasion, if it is requested by the little man, I will make something like waffles.  I have an apple waffle recipe that has just over 5g of carbs and is made of ground nuts, egg, and a few other things.  It's very good!

I have weighed out most of his carbs for the last week, and there is just no way he would eat the volume of 5 carbs of veggies in one meal.  It's huge compared to what he was getting.    On keto we counted every 10th of a gram of carbs, so the carbs in eggs counted, the carbs in avocado, in sour cream, in heavy cream, in EVERYTHING!  Now, I count his veggies at up to 5g a meal, which I know he isn't eating that much, and then the side of avocado with oil I don't count.  If I give him a cream soda (heavy cream, sparkling water and flavored stevia) then I make sure he doesn't get too many carbs in his veggies, and I count the carbs from nuts, but the freedom we have found in playing with his meals is incredible!  And sometimes a bit overwhelming. 

We are trying to stick to eating 4 times a day because it has been working for us.  That was all he was allowed to eat on keto but as long as he eats well, it works fine now too.  Doing this I know that I can plan 5g of carbs for every meal (making 20g a day) and then I leave the other 5g as wiggle room for things like cream, avocado, etc. and extra nuts or cheese between meals if he needs another snack. 

As you can see by my rambling, there is a lot of thinking going on over here about his food!

But I will tell you this, it is awesome to all be able to sit down at the table and eat together.  To let him try things from our plate, which of course he would prefer to his plate even though it's the same thing.  To be able to let him mostly feed himself!  We now have to take his shirt off before he eats but he gets so excited when he gets something on his fork or spoon and has to show us before he eats it.  Then he claps for himself!  We no longer have to scrape the bowls with a spatula, or make sure he finishes every bite!!!!  I can not tell you the stress that has gone away from that alone!  He also doesn't have to eat off the floor anymore, but he still does on occasion.  We are having to re-train him to know that he doesn't have to do that anymore.  The dogs are very happy with the new situation too.

And we can finally go out to eat with him!  We celebrated with a big dinner at a local steak house with family and friends.  Jack was very excited to see his cousin Grace and then not so happy when she was shy when she first got there.  So he threw his fork across the table at her but thankfully didn't hit her.  Did I mention that he's very 2 now?  But he ate all kinds of things and tasted lots of new tastes.  He will try anything that we offer but he often spits it out after we put it in his mouth.  I think we took him out every day for the first 3 days.  I try to take either cream soda or avocado with us as a side of fat and then we just order protein and veggies.  We have to be careful about hidden carbs so we are underestimating I think, but I would rather underestimate than go over.  

But the moral is that we all really like the new diet.  I am so excited that he gets to eat Thanksgiving dinner with us.  I think I'm even going to make some of his special cookies to share with everyone.  We were at a gathering the other day and his cousin really enjoyed feeding him cheese.  We are going to have to watch that one though because that night he had awful stomach cramps for about 3 hours.  I was worried that it might be kidney stones for a bit (another common side effect of keto) so we want to make sure that doesn't happen again.  Plus cheese does have some carbs and he would eat a whole block if we let him. 

As we experiment more and come up with new things I will post some recipes and pictures.  But for now, here is the fried chicken:

I took organic chicken breast and dipped it in egg.  Then the breading is equal parts of almond flour and parmesan cheese.  I then fried it in coconut oil, which is MUCH healthier than vegetable oil.  Super yummy!

slow and steady progress

It's like two steps forward and one step back around here.  Jack is definitely making progress.  I'm still not sure how I survived that first week after surgery, I guess just reminding myself that he won't remember all of this, but the whole thing was ugly and something that no parent should have to go through.  And no child for that matter. 

He is finally playing some instead of just sitting on my lap and screaming.  He is still very attached to me and Jonathan, but does okay now when Jonathan leaves for work.  I even got to go out to our Epilepsy Support group a few nights ago.  He cried when I left, but did okay and even went to bed without me. 

He is still sleeping in the bed with us but we are thinking about trying to transfer him back to his own bed next weekend.  We aren't getting much sleep. 

Today was a rough afternoon.  We weren't sure what was wrong, but guessed at pain by the way he was throwing himself around and screaming bloody murder.  We gave him pain meds and he turned into his normal happy self.  The doc said that he wouldn't need pain meds anymore, but he doesn't know Jack like I do.  Hopefully we will be done with it soon though, he went 2 days without anything at all.  Slow and steady progress! 

The big news that we got at the follow-up appointment is that we will start weaning the diet in 2 weeks!  TWO WEEKS!  We though that it would be 3 months, so the 1st of the year, before we would start this. 

We haven't seen anything that we know is a seizure, though we have seen some suspicious movements, but the doctors think it's just from the surgery.  But I haven't seen it in over a week, so all is good on the seizure front. 

And FYI, putting a child who is on steroids on a calorie restricted diet is just mean.  The poor baby is constantly crying for food.  I've even increased his calorie intake and he is still always asking to eat.  The sweet guy wanted broccoli and eggs and avocado for dinner so that is what he got, but he cried for the 30 minutes that it took to calculate everything out and get it cooked.  And yes, you read that right, he actually asked for specific foods!  He has been talking up a storm, some of which we still can't understand, but he is clearly making progress already.

But back to the diet thing, this means that he can actually eat Thanksgiving dinner with us!  We will have to make a few low-carb dishes, but it will be so much easier!  When the doctor told us that and left the room, Jonathan and I both sat there and cried a little.  For us to be able to eat the same dinner as a family is a huge deal.  Something we have dreamed about, but has never happened.  We can go out to eat and order off the menu.  He can have as much of the things that he loves most, like salmon or steak and avocado, as he wants.  We still can't give him cookies, or cake, or junk food, but he doesn't need that stuff anyways.  And neither do we for that matter.

I find myself a little overwhelmed, given that I have done nothing but keto for him for 19 months.  I have been emailing with the dietitian and to be honest, I'm not even sure how to get that many carbs into his meals.  It sounds crazy, I know, but we are planning on continuing to do the gluten-free thing and it seems like it is either one extreme or the other.  I'm sure I will find a balance in there somewhere, it's just going to take so adjusting to.

 
This is a keto meal.  There is a ton of butter and heavy cream in the eggs and then about 1 tbsp of apple sauce for a small amount of carbs.  He loves strawberries so that is where he can get a few and I of course have some keto cookies that I will continue to make for him but it is certainly going to take some getting used to measuring his veggies out in a cup instead of on a scale. 

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!  

Post-op

I keep meaning to come give an update but my arms have been glued to a sweet, and very swollen, little boy!

Surgery went VERY well! They told us it would be 3-4 hours and after 40 minutes they paged us. I completely flipped out and went running across the hospital because I had gone up stairs to get some Internet access. The neurologist called us back and said that it was done and the surgeon was closing him up. We were floored! the tuber was right on the surface and they removed a few others that were behind it too. A good section of his temporal lobe is gone now.

In recovery he was very upset but thankfully not puking! The first night was actually pretty calm because they had him on a morphine and valium cocktail, but it's been pretty rough since. We've kept the Tylenol with codeine in him on a regular schedule but he is just not himself! He is extremely swollen and in some pain. We can give him morphine every hour if we want but it doesn't seem to really help much. We finally got some Valium put back on his chart and that seems to do the trick better. He has also been very constipated. We managed to get some of that taken care of this evening but his belly is still a little swollen.

He is on high doses of steroids which don't help either. He is just mostly a cranky child. But the awesome news is that he is exactly the same child that went into surgery! He is talking the same and screaming "all done" anytime a nurse walks in the room, he can move both sides, pass objects between his hands, raise his hands up, self feed, kick his legs, and play just like before. And the best part is that we haven't seen a seizure since!

Yesterday he enjoyed riding around in a wagon! Today he enjoyed sitting in mama's lap in a wheel chair and going outside for a walk. He wanted nothing to do with the wagon today and was very upset if mama wasn't holding him. He wants daddy in the room too but mama does the holding. I got peed on 3 times today and anytime I needed to use the bathroom, he flipped out while I was gone. It's pretty exhausting to have a 36 lb toddler glued to you like a leach when you are exhausted from being in the hospital, but I am just so glad that he is doing so well and that the hard part is behind us that I will sit with him clinging to me for as long as it takes.

The kindness and generosity of others has been amazing as well. I don't know if I will get around to writing thank you cards at this rate. I optomisticly brought some to fill the time, but I have to laught at myself for that now! But know that we are so grateful for the cards, emails, gifts, food, prayers, alcohol, and company, there simply aren't enough words to express our gratitude or how loved and supported we all feel.

We are hopeful that we get to go home on Sunday or Monday at the latest. It depends on how the next day or so goes but it is looking like it will be soon. We are about to start keto for a final 3 month stretch and then wean to a much easier diet known as the modified Atkins. We are very excited about this!

I'd better go to sleep before it gets too late but I will post some pictures from the hospital after we get home. Hopefully nothing too eventful happens between now and then.

T-minus 11 hours

Surgery is soon!

I am nervous, excited, and enjoying an adult beverage brought by a friend.

The docs are confident that we have collected enough data, even tough he hasn't had one of his big typical seizures.

They will take us back around 7 and surgery is scheduled for 8.  Our neighbors, who we know from our epilepsy support group, had surgery right after Jack last Wednesday and will be doing the same tomorrow too.

Last night Jack was up from midnight to 4 and then woke up at 8 for the day.  He didn't nap all day and just finally fell asleep not long ago.  I really hope he sleeps all night!

I'm not really sure what else to say.... it's been a very long week and the next few days are going to be rough.  We have had so much support and it has been wonderful and really helped us through.

Here are some Seize Hope pictures:

 Christy and her dog are Seizing Hope here in Austin! 

 Here is Jack taking boxes to the post office to ship off to some of his friends!  

 Port Saint Lucie, FL

 

 Downington, PA

Albequerque,  NM

 

 Dallas, TX

Anaheim, CA

 Plano, TX

Fort Worth, TX

Leander, TX

 

And these are just the few that I have pictures of on my computer.  They have gone as far as Canada, all over Austin, I know of 4 class rooms here in Texas where these have been handed out and Jack has even gotten many cards from the kids.  Total so far 900 bracelets and cards spreading epilepsy awareness have been handed out.  I have another 500 (300 adult, 200 youth sizes) arriving on Thursday so if you would like some to help the cause, let me know!   

A huge special thanks to some Real Mom's out there who got all of this started and who have spread this nation wide.  This has given me something so positive to focus on during a very stressful time.  I will forever be thankful.  

If you are the praying type, please keep Jack, the surgeon and his team, and our family in your prayers tomorrow.  Seize Hope!