Playtime with Playdoh

Jace got a can of PlayDoh in his stocking for Christmas.

We didn't play with it until tonight.

Jace is such a texture child. He is picky with food because of textures and sometimes just flat out refuses to touch some foods. I was not sure how he would react to the PlayDoh.

He was a little unsure of it until my mom and I took part of it and played with him.

Still not sure of this squishy stuff

Here is Jace playing with the PlayDoh and then signing "All Done" after he is finished.

Today is my Dad's birthday and so we made cakes for my mom bring home to him tomorrow. They are chocolate fudge cakes - YUM!

Jace didn't help too much more than just grabbing the frosting canisters

and getting chocolate all over himself :)

Jace says Happy Birthday PawPaw!

Oh - we got out professional picture from the Christmas party back. Here it is.....
we look great if you ask me......he is one sexy man! :)

Happy Birthday Jesus!

*Be sure to pause the music on the left sidebar before watching videos*

MERRY CHRISTMAS
and most of all
HAPPY BIRTHDAY JESUS!

I hope that everyone had a great Christmas!

We sure did....it was busy (what's new) but good.

This is going to be a pretty short (in words) but full of pics and videos.

We celebrated Christmas on Christmas Eve since Jace is still too young to know the difference.

I had been using the plate we got at the Nutcracker Market as a countdown to Christmas but we finally got to use it for Santa and his cookies! 

Jace's letter and cookies to Santa

Jace's letter to Santa



Santa wrote a letter back to Jace

Opening all of our Christmas Eve PJ's - our family tradition.

Our "Christmas" morning we got Jace to the table to eat breakfast without seeing all of the gifts! :)

Happy Baby!

Oh no! Tickles from Daddy!

Oh Mom.....more kisses?!?!

 Here is everything that Santa brought Jace.

WHOA!!! All of this is for ME??

COOL! A roller coaster!

His very first ride on the Roller Coaster He doesn't know how to keep his feet up on the car but he will learn.

He was really liking the roller coaster until he hit his foot into the wall :(

This wagon runs a close race with the roller coaster!

And Yes - he DID like it - HE LOVES IT!!  

His very first slide!

 

He even learned how to slam dunk so quickly!

First Blocks

Along with those toys he also got a Bilibo toy, Colors made for the bathtub, books, and other fun stocking stuffers (playdoh, a toothbrush, goldfish, etc)

Here is JB reading the book Jace got him called "Daddy Loves Me" and then Jace reads it back to him.

Santa was good to JB and got him a Predator Call and some workout shirts.

I must have been good this year as well.

I got my first Coach purse. I LOVE it! He did so well picking it out that I have to brag on him! ;)

JB has started a monster I tell ya! I am hooked on these purses!

Our Christmas PJs

After Christmas at our house we went to Nana's house. It had been awhile since Jace saw his Nana and Aunt Casey. It was great to see them and he enjoyed himself.

Napping on the way to Nana's house

Nana and Jace playing with a bow

There was some Christmas music special on and Faith Hill was singing on the TV. Jace saw her and started to kiss the TV when she came on......watch this:

Christmas Day and the rest of the weekend we spent in Lexington at Papa Bryan's house.

Jace got into Papa's Tupperware cabinet and went wild! He has seen me baking recently which required lots of stirring. He picked up on it way quicker than I thought he would.

He was trying his hardest to make some Christmas goodies for us!

Our Baby Can "Read"

*Be sure to mute the music on the left sidebar before watching the video*

Reading "Harry the Dirty Dog"

Tonight we did Christmas with my parents. It was early but we have been itching to give them their Christmas present. We got them a few nights in San Antonio for New Year's Eve. We went there a few years ago and the firework show on the riverwalk is beautiful!

My parents got Jace a picnic table that also doubles as an easel for when he is older and does "art".

It's was funny because at first he tried pushing himself back from the table to get up. It took him a few tries to figure out the seat doesn't move and he will have to swing his legs around to get off the bench.

An easel?  No thanks....I just want to sit here and read!

Jace has started to "read" his books recently. My mom said she came into his playroom and he was sitting on his chair reading "Hop on Pop" and she offered to read it to him and he glared at her. She offered one more time and he threw the book. He does this with his paci as well if you ask if you can have it. He will throw it away and I am sure thinking "If I can't have it, you can't either!" He is so much fun!!!

If you look closely he does move his mouth with some of his words.

This is so incredibly cute for the first few minutes.....however he did this for about 30 minutes.

He doesn't exactly have an "inside" voice yet so you can imagine how it can get old.

Even still, I am so proud to know that he loves books and I hope he continues with that love since it really is true - If you can read, you can do anything!

I LOVE this book!!

I can not believe Jace will be 17 months old tomorrow!!! Time just goes faster and faster!

I am waiting for my first gray hair to pop up....with everything going on this past year you would have thought I would have started getting gray already. So far so good....I seem to have my mom's hair.

And the Results are In....

Jace is a surgical candidate!
All of his seizures are coming from a focal spot and it is right where his tuber is (in the left frontal area). The doctor did say that this area is the “language” area which may be why we noticed his loss of words and communication when times were bad and also why his speech is on the borderline of normal for his age. There has been some recent increase in his language skills so I can't say that he is majorly affected by it.



What's taking the doctor so long??



We go back February 21st to talk to this epilepologist again about surgery. Before then she will meet with the epilepsy board (including the neurosurgeon) and present Jace’s case to them. They will all concur on whether surgery would be best for him and what kind of surgery. With the results she found through the MEG scan, his case is pretty simple and straight forward.

We will more than likely do a Phase II test the week before surgery. This is where they put electrodes directly on the brain to even more precisely map out his brain and pinpoint the origination of the seizures. This is a good and bad thing. We want to get a precise location for the resection but this test has the risks of infection that you normally would not worry about since the brain is never exposed like it would be for this.

As long as Jace continues to develop and progress the way he has been then surgery will be in 3-5 months. If he was to worsen they would get him in for surgery quicker. In the mean time, we will not make any changes in his medications. After surgery they may change his medications but he will have to be on it for typically a year after surgery (as long as side effects are not increasing or causing issues).

Even with this surgery, as the brain rewires itself, he can possibly develop seizures from another location in the brain. This is something that can happen in any person that has this surgery. The other risk is if they didn’t get all the abnormal area out the first surgery so he would continue to have seizures from that area. They can’t say for sure that he will only need one surgery or if he will endure multiple surgeries.

The doctor said that putting Jace back in daycare would not be a bad idea considering he is starting to learn so much and the socializing is a good thing to have at this age, even if it were part time.

However, if he continually gets sick from attending daycare then we would reassess that situation and go from there. He cannot go into brain surgery with any type of illness. Also there is always that chance that illnesses can worsen seizures. He has been pretty healthy the past 6 months – besides his fever he spiked at Thanksgiving. Majority of those 6 months he was in daycare. *knock on wood*

As all of this sounds like "bad" news, it isn't. We were hoping that he would be a candidate since this is the most successful path to getting him seizure free! I know a few people I have told this new to was unsure of what to say since it sounds so terrible. It is terrible, however, it's our journey we have to travel it. Between talking with doctors that don't have any emotion about this, knowing that we just have to learn to deal/cope and having faith that God is guiding us, its hard to break down and get worried. If we did give in to our fears and anxiety we would be nut cases. 

The only bad news we learned today was Jace's seizures are indeed long. What we have been normally seeing are seizures and not a postictal state. We were told incorrectly in the EMU while getting tested. Jace has seizures lasting anywhere from 1 minute to 30 minutes! With TSC, seizures can be even more different than they typical person with epilepsy. This is partly why is called Tuberous Sclerosis COMPLEX - it is nothing but complex.  

So on to fun stuff. Last week sometime JB and I looked at the baby monitor and saw Jace sleeping like this

He LOVES to put his feet or arms out the crib or prop them up while he sleeps. I don't know how he is going to adjust when we turn his bed into a toddler bed.

Saturday, JB and I went to our company Christmas party. We had a professional picture taken there (haven't received it yet) but here are a few shots that we took. JB looked incredibly handsome I must say. I was one proud wife that night! The food was pretty good, the band was incredible and we had fun dancing to a few songs. We had never been to a Christmas party for Mustang and I have to say it far exceeded my expectations. What a classy and beautiful party!  

After a night of fun like that Sunday was a pretty slow day. We were suppose to go do the Bryan Christmas in Lexington but JB was in no shape for that. And since this week is going to be busy for us to Jace and I (well mainly I) made cookies for Santa. We made some yummy Old Fashioned Chocolate Chip Cookies!

They turned out pretty good but for some reason whenever I bake my stuff comes out with too much of a baking soda flavor to it.......I wish I knew why. I only use the called amount of baking soda so I know it's not TOO much in there. Oh well - they are still scrumptious! :)

Who doesn't love cookie dough?

My air freshener for the day :)

YUM!!

 Hopefully I can  get on and post about Christmas later this week.

If not I want to wish everyone a MERRY CHRISTMAS!!

Oh and tomorrow is the first day of winter!!!! I wish the weather would get the memo.

Its going to be 80 degrees tomorrow! Gotta love Houston's wishy washy weather!

If You're Happy and You Know It....

*Pause the music player on the left sidebar before playing videos*

Jace has a few favorite songs like "Itsy Bitsy Spider", "Pat-a-Cake" but recently his most favorite is
"If You're Happy and You Know It"

He learned this song when he first went to his new daycare back in April. They taught him to clap but he now enjoys stomping his feet. He loves loves loves to stomp his feet. Here he is doing his favorite dance move to his favorite song :)
(Don't mind my terrible singing )



Tonight at dinner Jace was swaying side to side and "singing". We were able to catch the VERY last moment he was singing and dancing at dinner before he wanted out of his chair.
He was really getting into the singing - It was SO cute! :)



Tomorrow we have our Christmas party for work. Justin and I get to dress up in formal wear and go out and enjoy each other! I can't wait to get all fancied up and feel pretty. At least that is what I hope I feel :)

Funday Sunday

I forgot to post the videos of Jace signing "please" on Friday



And then I was trying to get him to sign "please", he rolled his eyes at me before I could figure out he was trying to tell me he was "all done" :) Oops.......




Our Funday Sunday was full of tickles and playing :)

I love watching Jace and JB play - here they are tickling each other
It's so sweet when they play. It melts my heart!



I think I have two babies - look what I found in the crib when Jace was "supposed" to be taking a nap

Awwwww.... Cuddle Buddies

Playing and NOT napping like Mama wants

My Two Hearts

I have two babies.....that needs paci's?

Dada stole his paci!

Ok....We can share!!

The Eagles Soar to State

Jace enjoyed his first football game despite the cold front that blew in.

JB and I were expecting Jace to not tolerate being at the game as well as he did. We even took separate vehicles just in case I needed to leave with him. After we let him walk around the stadium a bit he was ok sitting in our laps for the game. I am impressed!

Enjoying a snack at the game

Actually after halftime he started to get sleepy and eventually passed out right on my shoulder.

I think he really enjoyed going to the game.

He zonked out and stayed asleep all the way home and went straight to his bed.

Watching that football game made me really miss my high school days on the side lines with the trainers.

I have to say that was a GREAT game!

Good job Eagles!!

What a Blessing!

Yesterday morning I received a phone call from Dr. Von Allmen's office. It was her nurse and he was telling us that the doctor felt terrible that she was able to visit with us while we we in the hospital. We had residents come by but never the actual doctor. I was a little upset about that but then again I saw the EMU and how incredibly busy they were this week! So, the nurse proceeded to tell me that the doctor wanted to schedule a follow up appointment. I was thinking great I didn't even have to call to set this up and they are going to get us in to see her next month. Nope.......she wants to see us on December 20th!!! This was GREAT news to hear! I am so glad we do not have to wait 4 long weeks to find out any information. We only have to wait a little over a week. Since Dr. Von Allmen is the big wig in the EMU she has the strings to pull and get all the test results together that quickly for us to discuss.

Tonight we are taking Jace to his first football game. JB's high school team is on the road to state and they are playing right by our house. This is GREAT timing since we just taught Jace to do "TOUCHDOWN!!!" He can't exactly say touchdown but he screams something with his arms up! Its too cute!!

Yesterday while I was doing chores and such it was VERY quiet in Jace's playroom so I snuck in to see what he was doing and this is what I saw. He was playing so quietly and on his own.......and he had NO clue I was right there behind him filming.

Phase I Evaluation: Day 3

Jace had his MEG scan and MRI today. He had to be sedated for both so they made them two back to back. I hate seeing him sedated but I am glad they can do that so he isn't so tortured by the big machines and tests they run.

Talking up a storm while waiting for his MEG scan

The MEG scan and MRI took a total of 4 hours!! I hate knowing he had to be under for that long but he came through fine. He needed the sleep anyway. They sedation they used on him only basically put him in a deep sleep. It was not the anesthesia where they would have to hook him up to a breathing machine (like they do for surgeries) and he could breath on his own. He did wake up a few times in the tests but the anesthesiologist quickly boostered the sedation to put him back out.

When Jace was in recovery he woke only enough to drink some apple juice then was back out for another hour +. Finally he woke up at 6 and ate dinner. He was STARVING! His last meal was at 8 pm last night.

He is such a little trooper!

After dinner we were discharged. Once we set the stroller up Jace was BEGGING to get in it!

Poor guy was ready to get home!

We have to make an appointment with Dr. Von Allmen in 4 weeks to get the results of everything. I was told incorrectly on Tuesday when he said we would know if he was a candidate or not.

Once we made it home Jace was playing and must had gotten anxious about Christmas!

Our poor tree got the wrath of Jace! He sure is ALL BOY!

I knew I should have used fishing line to secure it

Well I am going to bed! I hope to sleep better tonight than I did last night.

Phase I Evaluation: Day 2 Part 2

The rest of the day went pretty smoothly.
Jace is sound asleep right now and went down at his normal bedtime.
Hopefully he sleeps as well as he normally does too.

Poor guy was tortured before bedtime though. They flush his IV twice a day here and just like in the past his IVs start to leak at the site. If it can't be save they have to remove it and start another one elsewhere. Well, after attempting to "save" the IV they ultimately pulled it out and said they would be back to start another one. Wait a minute - this child who is *THIS* close to going to bed for the night is going be woken up for another IV torture fest? I was not looking forward to that. Thankfully, a lady from anesthesia came in to get me to sign consent forms for his MRI and MEG scan tomorrow. She told me they could put him to sleep with gas THEN start an IV. There would be no fighting, no torture, and a much happier baby and mommy. I still do not know why they don't do this to start with. It's one thing if they need the IV for meds but if its JUST to get an MRI or other scan done then why not start it right before the procedure? I guess I will never fully understand hospital's methods.

The way this monitoring unit works is every time Jace has a seizure I have to push a button which sets off an alarm to the nurses station. Usually a nurse or two come running in and someone answers over the speaker on the wall. They ask to have him facing the camera so they can see what he is doing at the moment to go with the EEG info. The nurse said that Dr. Von Allmen mentioned to him that when I push the button the seizure had already happened by that point and what we are mainly seeing is the postictal state (after seizure affects - confusion, fogginess, etc). His seizures are only lasting 10-15 seconds and then he enters that postictal state. We obviously are not really catching the seizures and its the confusion/fog afterwards that clues us into that he had one. What is great about this is that the seizures are not 4 mins long like I have been thinking but the bad is that they are still occurring multiple times a day. I am guessing there are some we are not catching either since not ALL seizures have to end in a postictal state that is so obvious.

It appears that the doctor is happy with the amount of information they have received from the EEG. Now we just need to do the MEG scan and hope that it matches up with the EEG findings. (Magnetoencephalography, or MEG scan, is an imaging technique that identifies brain activity and measures small magnetic fields produced in the brain. The scan is used to produce a magnetic source image to pinpoint the source of seizures. Magnetic fields are detected by extremely sensitive devices called "super conducting detectors and amplifiers," also known as SQUIDs. The scanner, used to detect and amplify magnetic signals produced by the brain, doesn't emit radiation or magnetic fields.)

They will also do his MRI tomorrow - I am guessing this is to make sure there are no new findings since October and also that the Sabril hasn't caused any changes either (a side effect).

The lady from anesthesia said he is "scheduled" for 9:30 am. This can mean anywhere from 7:30 am to 12:30 pm since he can easily get bumped for emergencies and such. That's all fine and dandy but since he has to be sedated he can't eat anything past midnight. Might as well say nothing past 7:30 pm because I am not waking him right before midnight to give him something to eat. If he wakes up before midnight for some reason I will offer him some milk or water since he won't even be allowed that until after the scans.

 I am praying tomorrow goes smoothly for all parties involved - but especially for Jace. Poor guy is just a baby and its unfortunate he really doesn't know any different. I hate that he is almost used to the metal hospital cribs and likes "Topper", the green giraffe they give out to every child that comes to the hospital. I hate that we have so many "Toppers" that I think we can start a collection. I hate that we see some people that work here they remember us. I hate that we have to do this so often. While we are on the topic.....I hate these rooms. This is what our temporary home looks like. Keep in mind we can not leave the room. Jace is hooked up to the wall and can reach the door but no farther. I can leave but only for a second or two to get his milk from the fridge or to refill our water jug. 

I call that the Monkey Cage!

Blankets hung up to help darken the room at night - its still bright even with them up!

 I forgot to mention about yesterday's visitors. First off we had JB's brother, Nathan, stop by. Jace was SO excited to see him! It was hilarious the way he got all excited when he saw his face. Nathan usually visits us when we are here since he works in the area. Its great to have that familiar face around and to have someone that cares right around the corner if you need something.

We are blessed to have supportive family and friends!

Our other visitor yesterday was a chaplain. I did not request a chaplain to come by but what a blessing that he did. It really hit me when I started to tear up and he asked me "Do you give yourself permission to cry when you are overwhelmed?" That made me think. I really don't but I need to - I have the right to have feelings and cry too. Its healthier to let it out anyway. It was great to talk to him and have reassurance that what I am going through as a mother in this situation is "normal" (what IS normal anyway?).

I got to thinking....as much as I HATE all of this and I HATE TSC.....I hate that I may have to let someone do brain surgery on our baby boy.......I know that God has a plan for all of this. If we are going through this in order to be supportive to another family going through this one day and maybe lead someone to Christ through our journey then I open my arms to all of this.

Yestreday, I met a mother, Lindsey, of a 20 month old boy, Peyton. She said he son was 5 months old when he started with his seizures. He caught the Herpes virus that causes cold sores (not the STD) and it traveled to his brain. From there it caused encephalitis resulting in seizures and major delays. She had him at the hospital in Dallas where they told her that even though the seizures are focal they can't call him a surgical candidate. That is when she decided to get a second opinion with better tests here in Houston. We welcome her here and I hope she gets MUCH better care here for her baby boy than she did in Dallas.

Its so mind boggling how you can easily have the healthiest of children and in a blink of an eye their worlds are turned upside down. I do not blame any mother for being overly cautious with germs and people touching their kids. As rare as it is for a virus to travel to the brain - it is still scary and CAN happen.

Earlier I put in Jace's Baby Praise DVD since the ONLY thing on was Sponge Bob (HATE that cartoon!)

I am glad JB reminded me to grab a few DVDs because I would have gone insane if Sponge Bob had to be on. As soon as I got the DVD in and it started Jace was glued! I am not sure if its the voice, the pictures or what but he loves that DVD. I don't mind because I love the songs myself and could watch/listen to it over and over again.