The Crazier - The Better!

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Don't get me wrong...I.Love.Roller.Coasters.A.Lot. The crazier the better!

However, I do NOT like the medication roller coaster.

I called Jace's epileptologist's office this morning since its been 2 weeks and I had not heard back on his blood work. After realizing they were out of the office last week I finally got in touch with the office this morning. They checked online and they didn't see the results for the medication levels yet so she said she would call me back. Lunch time came and went and I was still waiting so I called back and left a message asking if we needed to bring Jace in or what. With the way his seizures have been going its progressively getting worse. We were very tempted to get him checked in for monitoring.

I got the call back from the nurse and she said the Banzel levels were back but the Vigabatrin levels were not. His banzel levels were 10. The therapeutic levels are 5-40 so he was in the therapeutic range but not in the range they would prefer to see with him being on the dose he is taking. So, with that they suggested we start to slowly increase his Banzel. We should see an improvement within the week and if we don't we are to call them back and let them know.
The good thing about this is we haven't been poisoning him with his medication by overdosing. Its not easy seeing the good in this situation.....I am pretty frustrated about it all. But I tried to be :)

All we can do is continue to pray, stay strong in our faith and know that He will bring us through this!

Jace is special to God and He has a GREAT plan for our baby boy! :)

Before we left to head out to Lexington Jace was watching part of the movie Chicken Little. A upbeat song came on and he was getting DOWN! LOL I didn't catch it all on camera but here is a short clip of his new moves

 

I love how he gets his arms going and then that leg starts to get away from him LOL

Crawfish in the Country

JB made crawfish this past weekend for the first time. HEB was running a GREAT special - $.99 a pound!

Too good to pass up so we gave it a try and it turned out incredible! Good job JB!

Saturday we had a visit from Marty and Roxanne (JB's oldest brother). Brooks and Lincoln came along and Jace enjoyed seeing his cousins (until he got fussy - the trend for this past weekend due to his seizures).

Snacktime with the cousins

On top of having a crawfish boil and visiting with family and friends we had a birthday party to attend for a sweet little 3 year old, Kylee! She is so precious and had a blast at her party - I think she likes the attention :)

Sunday we had a little family party out at Marty's barn and Jace got to spend more time with his cousins.

He is so curious about everything around him and had a blast exploring.

On our way out this party "Swinging" came on and Jace was getting down - he LOVED that song! HA!

As soon as the camera was on him for me to catch his grooving he got a bit shy but was still getting some moves in.

This morning Jace was riding his tractor and I put his cowboy hat on him.

He makes a cute cowboy......

and a cute southern belle :P

Tonight we went to Chick Fil A for dinner- Its ALWAYS a great day at chickfila.....

Jace of course wanted to go play and he actually went to the top of the play structure and slid down the tunnel slide! Last time he was there playing he was too unstable to climb all the way up.

I have to say I am impressed! I actually got a blog post in before 9 pm!!!

Of course now I have laundry I am behind on but I got a chance to post and get this out :)

God Bless and Good Night!

Or as Jace says it "Nigh Night.....MUAH!"

Curls, Baby Bumblebees, Kisses and Silly Faces

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Shirley Temple like Ringlets!

That is what Jace's hair is becoming more and more like everyday!

I KNOW this is all from daddy because I was lucky to have a few hairs on my head and the few I had were straight as a board. Look at this cuteness!!!

Baby Face + Ringlets = heart melting cuteness

Jace has been singing along with me recently on the ride home from school and I HAD to catch it on camera. Of course he has caught on to the camera and usually gets shy when its up.

He has been singing Baby Bumblebee with me, doing the hand movements and all but today all the songs we sang had very little effort put forth HA!

*please excuse my bad singing but I had to share his cute singing skills*

The best new thing Jace has been consistently doing.....giving KISSES!

Tonight I finally got Jace to really eat cauliflower. His face is priceless when I ask him "It's good huh?"

He eats another bite though. Then the best part is how he looks at me like he is asking "all done?" in a matter like "can I be excused now?"

Seriously Mom?

More?

Ok....Get off of me!!

I love this Baby boy!!!

Silly Faces!!

Practicing more silly faces

Tongue?

After Jace went to bed and we finally got to relax, Lil Bit jumped up on the recliner with JB. She was sitting up like a person and eating watermelon with him! It was hilarious looking!

And the Parties Begin....

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Jace LOVES to take his shoes off and it can be VERY frustrating. I have noticied that he has been trying to figure out how to put them on as well.

This weekend was the start of all the birthday parties we will be attending over the summer.

This weekend was Addison's birthday party. This little girl is SUCH a cutie!!!

Ashley did incredible planning the party and it was so much like a carnival when you entered the party!

I am envious of her creativity and party planning talents!

Here are some pictures and videos from the party :)

Later Jace got to ride on the tractor with Daddy

(BIG thanks to Lance and Jennifer for letting us borrow it)

And later that day Lincoln came over to play with Jace.

Just like typical boys they were throwing rocks

Tonight I filled up Jace's whale pool and put him in it.

It started out like this.....

Mmmmooommmmmamaaaa.......stop!

But once I turned off the spray from the whale he quickly started splashing and playing

Ok.....All Done!

Hanging in There

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Jace loves to sit in the recliner with JB

Jace's seizures have been so subtle since starting him on the specialty medication, Vigabatrin.

He can interact, respond and function while he is in an episode. Its so odd that even the nurses at the epilepsy monitoring unit couldn't recognize his seizures like JB and I could until they read the EEG.

Last night Jace snapped into an episode after our shower and was out of it for quite a while after. Here is a picture of him in his seizure - you can kind of see the blank look he has on his face.

He is there but he isn't there

We always hold and hung him while he goes through these

I caught a clip of him as well. I like to record him with my phone where he can see himself when the camera is rolling and normally he is all giggly and enjoys watching himself. This clip you can tell he sees himself and is listening to me but he really isn't quite "there"

Then about 10 minutes after this he is back to normal, a little out of it but better and playing. You can see at the beginning he smiles at the camera.

So, after talking with JB about the increase in seizures we have seen with Jace lately we decided we should at least call his epileptologist. They are still not as bad as they used to be but the fact that they slowed down to where we didn't see seizures for day and now we are seeing up to 4 a day (on the weekends) is not a good sign in our eyes. I put a call into the nurse and she spoke with the doctor immediately. On a side note I love how well this doctor and her nurse cares for the patients and parents. We are never pushed aside and every issue has been resolved quickly. I have never felt more cared about before by a doctor!

Well, the nurse calls back and says we need to get Jace's blood work taken so they can see how high the levels of his medications are in his system. The reason being is the levels can be too low = non therapeutic, too high = toxicity and can cause seizures or just right = seizures are breaking through. I know when we get those numbers back it is going to show that Jace's levels are too high and we will have to start weaning him down off the meds. He has been healed by God and I KNOW he will be taken off these meds.

All my prayer warriors that read this blog - I know there are some out there - please pray for this outcome.......pray that God has answered our desperate pleas that we pray for each and every night with Jace and every time we pray!

This morning I took Jace in for his blood work. After it taking 20 minutes for the tech to figure out what they needed to draw for we got started. Vigabatrin is a very special medicine that isn't widely used so it is not a normal blood level test that is run. The tech had to call the nurse and I love that the nurse doesn't accept ignorance. Had the tech read the orders well enough she would have seen the test had to be sent out to another lab that CAN test for this. The blood was drawn, Jace did a great job - he cried but he was a big boy and didn't fight me holding him too much. He isn't falling for the cheering after events like this anymore......he gives you a look like Why in the world are you cheering when that HURT?!?! LOL Its not funny that he has to deal with this BUT its funny how he is growing up and learning to have his own feelings and opinions! OH and he is very matter of fact about his feelings - that's for sure!

Since I was instructed to not give him his meds until after the blood work I had to bring his medicine with us. We get back into the car and I get ready to give him his meds when I realize that I forgot the pill crusher! Grrrr.....I was MAD - at myself! How in the world could I forget one of the most important tools I use for giving Jace his meds. Not a huge deal - there are pharmacies I can get a new one at. The main issue was I expected getting Jace's blood drawn would be quick and I wouldn't miss much work to get this taken care of. JB always tells Jace that when he has dr appts or something of the sort that day then we will get donuts in the morning for breakfast, so I still had to stop and get him breakfast too. I stop at a CVS, get Jace out of his car seat go in to find they were sold out of pill crushers.....WHAT?? are you kidding?  I put Jace back in the car finally after he fights me AGAIN - apparently he was "all done" with the car today. I texted JB to vent about my forgetfulness and then CVS not having what I need. At one point I asked him "When are we going to just get a break?" I was thinking that I am tired of all this and I wanted so bad to just "give up" in a way.  I drive to a Walgreen's and they had a pill crusher. It was nearly $9 but I had one and that's all I cared about at that point. Again after fighting Jace to get him back in the car I finally went and got Jace donut holes (and Bavarian cream for me of course!!). Gave Jace his meds, dropped him off at daycare and headed to work.....finally!

Enjoying the yummy donut holes and chocolate milk

On my way back to work I get an email saying I had a message sent to me on facebook. It was a short but VERY powerful message from a lady that seems to always come and tell me what I need to hear, as if she were an angel sent to me from God. Her short but sweet message titled Hang In There said this "Holly don't give up...God is going to use your little one for HIS glory...keep your FAITH strong... "

Wow! God knew I needed to hear that and it was loud and clear! After that message I decided that I was done with dealing with the day, and everything - I was reminded to just hand it all over to God. I need that reminder quite often as my control freakish side takes over at times - especially when anxiety sets in and I get stressed out.

Today ended up being a good day....busy but good. I went and picked up Jace from school and some of his artwork was ready to be sent home. I HAD to hang this one up because it is the epitome of a BOY masterpiece! Presenting to you - Jace's Mud Painting

Clumps of mud and all!

Jace has been eating better lately and even ate my Mexican casserole tonight. He is so silly sometimes and I love to catch video clips of him.....here are a few from tonight :)

Mmmm.....thats Good!

Jace loves Addi's invitation and he gives her kisses

Jace being silly with mommy and dancing.....before telling me "all done"

Jace watching himself int he camera.....making faces :)

He is getting to be too big -

He goes and sits on his couch to read his book "Where Do Kisses Come From?"

Of course he throws the typical tantrum at the end of clip :)

Step Forward to Cure TSC - Jace's Prayer Posse

The day has come for the WALK!!!

 8\I am going to attempt blogging with Jace running around SO......if he has some input I may just leave it on here :)

We had shirts made for the walk by Digital Imaging Services who is owned by family friends, Reka and Danny Benczedi. The shirts are GREAT quality and the printing is not the kind that cracks, fades, or wears off. I HIGHLY recommend using them when you need custom printed shirts!

Adult Tees

Toddler Tees

After a late start this morning (Jace let us sleep in until 7am surprisingly) we finally made it to MacGregor Park. Our team was a good size even considering quite a few who planned to come could not make it.

Small snack before the walk with cousin, Brayden



Jace's Prayer Posse
Left to Right: Kylee, Staci, Cade, Sheri, Dani, Brayden, Grant,
Justin, Kristen, Holly, Jace, Pawpaw Huetwohl, Patti and Ranjita



Daddy and Jace ready to walk

Mommy and Jace

Before the walk we were told about the money granted to TSC Alliance for research.

There is normally 4 million given for research by the department of defense but this year they were granted another 6 million to fund research!!

Dr. Northrup and Dr. Koenig spoke about the research they have been conducting at the Houston TSC clinic. So far their trials have been successful and will continue!

There will be some coverage about the walk on Channel 11 KHOU news at noon on Monday. Rick Trevino from Channel 11 was at the walk - his neice has TSC and so he is personally impacted as well.

Look for us walking on Monday at noon!

And then the walk began.....

Aunt Kiki and Grant

Thank God for the Beco and this GREAT weather

Sheri, Dani and Pawpaw Huetwohl

After the walk there were hotdogs and hamburgers served, a silent auction was put on and the kids played at the park! 

They also had a firetruck come for a bit to give tours to the kids! 

We had Jace take a picture with a firefighter. He was mesmerized by the doors on the truck! HA LOL 

They gave out door prizes and Jace won a Transformer's Snuggie :)

He may not be able to use it just yet but I bet it is used alot in the future!

We got home and everyone took a nap (well except me)!

Jace was POOPED!

Jace has something to say:

3vv c vcx , lc l,; c/.x/.cv f,sxz

- Love Jace :)

That was Jace's way of saying THANK YOU to everyone the donated and those that walked with us, either in person or in spirit! We are so incredibly blessed with so many family and friends that care for our family and Jace's future. WE love you all!!