Phase I Evaluation: Day 2 Part 1

So far today has proven to be what I thought it would be. Jace became a monster for a while - fighting his naps and just crying and screaming. He finally gave in (only reason I am blogging right now HA!) and is napping peacefully. He needs it!

JB came by at lunch time - even brought Chick-fil-a with him for all of us! YUM! Chick-fil-a and JB can make anything we are going through pleasant. I love seeing my husband's face. I miss not being in our home on these cold days snuggled up with him. I know its only been one night but still....being away from home for an unknown amount of time is no fun.

Jace is really missing his Daddy too. He says Dada ALL the time; usually when he is trying to fall asleep - its like he is looking for him because he wants to see him before going to sleep. He was so excited to see his daddy today! They played and laughed.....I love watching those two interact. It melts my heart and really shows how blessed Jace is to have such a great daddy and I am to have him as my husband!

This morning I was told by the nurse that Jace's seizures have been frequent enough that the doctor SHOULD be satisfied with the information to proceed with the MEG scan and MRI, hopefully tomorrow. This has not been confirmed yet, but from his experience, after having as many seizures that Jace had yesterday and today its usually enough to go from. The great part (if there is anything great about this) is he didn't have to wean off his medications at all for this process! WOOHOO!! That really scared me. I thought we would be sitting in here weaning him off the meds to get him to do the head drop ("SCARY") seizures for days. I was really dreading that and I pray to God I NEVER have to see those scary episodes again. They are satisfied with catching the typical seizures he has at home recently on the EEG and using that info. From what I get from this overall is that the scary seizures he had in the past were probably more likely his seizures getting out of control and his brain fritzing out because of them. Now that he is on medications that is calming the brain, to an extent, we should be able to see a focal area. At least that is what we are praying for.

This update may be a part 1 for today....we will see if there is anything worthy of blogging about later today!

Proof that he DOES in fact have an off switch

Phase I Evaluation: Day 1

*pause the music in the left sidebar before watching videos*

We had to check in at 7:30 this morning. This means we had to leave the house by 6 am which means I had to wake Jace up at 5:30ish. He has not had or wanted to wake up that early since October! He did very well dealing with the early wake up call on top of not being able to eat until almost 10 am. We were not sure if he was going to get his MRI done today. The MRI requires sedation for a child his age so they don't want anything on his tummy when sedated. Luckily we will do the MRI at the end of this stay and we were not put through the no eating rule any longer than needed today. 

Leaving the house today I realized there are only 18 more days left until Christmas!! WOW!!

You would think waking up that early would cause Jace to want to nap more.....nope! Not him! He took one nap earlier and fought ALL day with me for the 2nd nap. I FINALLY got him to nap at 5 pm after they brought me a rocking chair. Hey - he knows how he likes to be put to sleep.....can't fault him for that huh?

The nap was great timing too since I have started with a migraine. I hardly EVER get migraines. They occur at most 3-4 times a year for me and thats a max! Luckily I keep JB's migraine meds in my purse for when they happen to him on random occasions and so I was able to take something that would actually work. Tylenol and Advil are a joke when you have a migraine!

Jace did great getting the EEG hooked up. They "swaddled" him and that helped quite a bit!

Proud Momma that he was such a trooper!

I always said that Jace looked like a Scuba Diver with the EEG hooked up but I finally figured out what he REALLY looks like........a SNORK!

Ok some of you may not remember this cartoon, either because you are too young or too old, so I added a picture of what the Snorks look like!

Ok.....back from a break since Jace decided to only nap for 30 mins earlier and then bed time took 3 hours! Its almost 11 pm and I am exhausted. Both Jace and I had tears at bedtime and finally he is exhausted enough to be out....AND snoring!

Playing the piano for Mommy

Here is a clip I caught of Jace earlier today playing. You can see how far he is "allowed" to venture while hooked up to the EEG. Also, he is being pretty silly as usual!

The "Big Brother" camera that follows Jace in the room all day and night

I was trying to get Jace down for bed and at first he was trying very hard. Closing his eyes and laying there but then the sillies got a hold of him! He would just sit up and start giggling at me so I couldn't help but laugh too which just added flame to the fire. He is such a little performer now.After tonight I have realized how much he tries to get you to laugh or smile at him. Its hard to be so mad about looking back at it. His personality is shining through and part of that is he enjoys making people smile and laugh. How can I be frustrated at that?

Here is a little of what he was doing at bed time.....we were just giggling at each other.



I sent that video to JB and he was like "well at least he is in a good mood." That was very true until the last hour before he pasted out. That was a lot of crying (from both of us for no real good reason beside tiredness) and being restless. I wish it were that easy to just think oh he is in a great mood because I know exactly where this will all end up at some point. Either later he will become a monster OR tomorrow after he wakes up at the crack of dawn he will become a monster........either way its not a good outcome.
I just have to remember to breathe.......and keep in mind that we are here with purpose. Greater purpose than we probably know. I know God is putting us through this for a reason!

I am so tired I doubt I will be making much sense now but I am going to finish this post :)

They had to start an IV today. This is needed since the MEG scan and the MRI will require sedation, but also if he needs emergency meds to get him out of a seizure they prefer to use IV form. 
It took them three tries to get him an IV started. I am not so sure its because he is a hard stick as it is that they are not really use to starting IVs in such young children here.
They 2nd attempt they did get an IV in his arm but that artery blew (yep - going to be a pretty big ol' blue bruise I am sure) so they had to put one in his foot. He is still able to walk and play. Its actually easier because I can put a sock on his foot and outta sight outta mind - no playing with the IV port. He did manage to get a kink in it earlier and noticed it when they flushed it. They had to mess with it, re tape it and that sent him into a tizzy. This was when I was trying to get him to sleep after an hour so I thought maybe after he was upset over that it would help him sleep......nope. He STILL tried to do funny stuff until that last hour.

Ok - Willie Wetworth is starting to stir.....I better turn off this computer before the light gets him all wound up again!


*Willie Wetworth: An orange-skinned infant, male Snork. Even though Junior picks on him, Willie looks up to his big brother, Junior. He is the opposite of Junior - nice, friendly, generous, and well liked by all. He is friends with Smallstar. Takes after Grandpa Wetworth 

Crib Carnage

Last week I noticed just a few bite marks on Jace's crib and thought I need to get those gummy crib rail covers ASAP!

Well....this past weekend I noticed I was TOO late! This is what I saw!

MMMM....Baby eat crib!

Those teeth marks are NOT little either. The picture does NOT do it justice.

So to avoid splinters and paint being ingested I decided we had to do something. Since that rail was ultimately ruined I was not going to spend tons of money to get a crib rail guard.

I took two of his old receiving blankets, cut holes in them and tied ribbon through them around the rail.

And Presto........a cloth crib rail cover he can teeth on all he wants without ruining the furniture or our pocket book any more!

Ok so they don't "match" but who gets to be fashionable when you have a baby?

Firsts and Seconds

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This weekend was BUSY!

Lets talk about a First.....Jace's First Haircut on Saturday!
With Jace's extended EEG coming up I knew we HAD to do something with Jace's hair. It had gotten so long and getting glue out of it would be such an endless task.

We were choosing between Cool Cuts for Kids or Pigtails and Crewcuts.

Well after calling both places we decided to go with the one with the most professional sounding staff - Pigtails and Crewcuts. After all they were going to be in charge of cutting Jace's hair without scaring him.

I have to rave about Pigstails and Crewcuts! They did incredible with Jace. He didn't shed one tear!

I am pretty sure that the main factor that kept Jace content was the DumDum lollipop I brought for him.

We took many pictures and some video which I compiled together. Enjoy!

I can see the Fingerprints of God

He doesn't look like a baby anymore :(

After getting his haircut it was lunch time at Chick-fil-a! YUM!

Jace loves eating there as much as we do.

And he should I ate it ALL the time when I was pregnant with him!

And for the seconds.....After lunch it was time for Jace to go see Santa for this year!

It was surprising that there wasn't a long line to see Santa like last year. At Bass Pro Shop they offer a free 4x6 picture with Santa. How much better could you get than free?!

Jace again didn't shed a tear - he did look at Santa like "Who in the world are you?" :)

It was time to go home after seeing Santa........but first a piggy back ride from daddy!

Classic plumber's crack

Another first - Jace eating off a plate like a big boy. My mom has been working with Jace eating off a plate or out of a bowl and its appears to be successful!

Lil Bit enjoys Jace at times and even tries to play with him. Here they are playing with Lil Bit's teddy bear.

A Thanksgiving Tradition?

Last Thanksgiving Jace experienced his very first fever...and I guess he wanted to continue with that tradition.

Once we made it to Lexington I noticed Jace felt a little warm. It was nothing that REALLY concerned me but I gave him some medicine. This Thanksgiving started out great and Jace had so much fun playing with his cousins. A few hours later at lunch once the cold front moved in Jace started to feel warm again. I didn't really think much about it since I knew he has been dealing with his 2 year molars lately.

I started to get worried when we were standing by the door, someone opened it and the cold air blew on him and he started to shiver and chatter his teeth. JB and I started to worry that it was a weird seizure or something. After an hour of Jace acting very weird he started to get very warm. His temp climbed and climbed until eventually I was getting very concerned about that. I was relieved that it was a fever and not some odd seizure activity! Before we were able to eat dinner we went back to Papa's house because Jace was NOT feeling well. I was able to take his temperature and it was 103.6! Poor guy was showing no sign of being sick and this fever hit him like a brick wall. Thankfully the medicine got his fever back down and I was able to control it to a tolerable temp throughout the night.

You can see how miserable he looks here :(

That night I let Jace sleep with me. Normally when he is in the bed with JB and I he thinks its play time and hardly ever sleeps well. This night he slept great - besides the fact of being sick. Once he finally snuggled up his back to my belly he slept the best. I love that he is such a snuggler!

I had to put a pillow in my place to keep him feeling snuggled up

Friday we took Jace out to the land for a few moments and I had to get this picture of him sitting on the console of the truck.

After seeing this picture I decided it is WAY past the point of him needing a haircut!   

Look at that CA-UTE belly!!

We are planning to get his hair cut for the first time this weekend. Since next week we go into the hospital for the extended EEG, that glue will be easier to handle with shorter hair.

Friday night after Jace was still acting pretty unhappy and like he was not feeling well I decided that we needed to go home that night. I know that if I were not feeling well that I would prefer to be in my own settings and bed. We packed up and went home after Jace had his bedtime routine done at Papa's house.

Saturday morning he woke up happy and healthy. I am still boggled about why he spiked such a high fever. I am chalking it up to teeth but WOW! that was a big ol' fever for teeth!

A year ago I would have NEVER imagined Jace would actually beg to go to bed for a nap or bedtime.
To my surprise he does. My mom has said that he asks to go to his crib for naps but I experienced it firsthand this past weekend. It was not until after I finished filming this little clip that I realized he wanted to go take a bath and go to bed. The video is a little silly because I was trying to catch him saying "na na na na na" on the camera.




Jace usually LAUGHS with this alligator that giggles! He loves this toy!
That face is priceless!


And....one last clip! :)
Jace took an ornament off the tree and wanted to help put it back on the tree for mommy. I think it was his way of trying to go after another one though. Sneaky sneaky!
 

Gobble Till Ya Wobble!

*pause the music on the left sidebar before watching the videos*

The only part that I like about working out of the home.....coming home to this!



 Jace was talking up a storm and pointing at my Christmas "pretties". He doesn't mess with them ALL day until I get home. Little stinker! He was also playing peek a boo with the little boy in the oven :)

Speaking of Christmas "pretties" -  we had our first ornament casualty Monday night. My mom said all day Jace didn't touch the tree, 5 mins before I get home he decides to grab an ornament and smash it on the floor!

Aye yi yi......he is non stop! I wouldn't have it any other way though!

After he talked, pulled down my "pretties" and then did his "business" he wanted to dance. I missed the full dancing but I got him stomping his feet.

I doubt I will post on Thanksgiving so I want to wish everyone a 

 HAPPY THANKSGIVING!!

"Everyone Must Take Time to Sit and Watch the Leaves Turn"

 Friday we went to Lexington to see Papa Bryan and JB could hunt.

That night was crazy for Jace. I think this visit to Papa's house was the first that Jace was REALLY aware of his surroundings. He was so wound up that night and did not want to sleep. We let him stay up and play with his cousin Lincoln. He finally went to sleep at 10:30 pm!

On Saturday we let Jace play in the leaves that seem to accumulate in the apartment complex.

Even though its fall it was still warm enough to let Jace run around outside in JUST a diaper.

Dada threw leaves on me!

Oh they are crunchy!

   I had to catch a short slip of Jace playing in the leaves

Saturday evening Jace and I went to visit the Schumpert's. I really wish we lived closer to each other. Misty is one of my best friends and the little ones always enjoy playing together.

Jace and Keely playing with the stroller

Jace was getting love from Trey and Keely.

Of course Keely started out playing hard to get by kicking Jace but she eventually gave up the sugars!

I think Keely and Jace is loving the kisses to each other!

Shhhhh.....Don't tell Keely's Daddy! :)

We came home earlier than planned and slept in our own beds Saturday night.

Sunday morning we went and did our grocery shopping and it was smack dab in the middle of Jace's morning nap time. He fell asleep on the way home with his head hanging. He was snoring and must have been comfortable but it looks painful to me!

During his nap I put the Christmas tree up. So far he has been very good about not touching it and listening to us when we tell him no when we can tell he is THINKING about touching it. :)

I never let Jace play on the laptop but he seemed so interested today so I got online and found a toddler friendly site. He was really enjoying it!

I also downloaded another program just for him called BabySplat. It just has sounds and shapes pop up no matter what he hits on the keyboard.....he liked but I don't think my keyboard did. HA!

Before bed I was about to take apart his old "jump-jump" that he has outgrown by like 10+ lbs. He asked to be put in it so I let him have one last go round in it. Hehehehe.....he was JUMPING! He loved it! He really always enjoyed this toy - its too bad he outgrew it.

This week is a short week at work and then its time for the Thanksgiving festivities!

This is a fun time of the year but it goes by WAY too fast!

Only 2 more weeks until Jace's Phase 1 evaluation for possible epilepsy surgery. This partly scares me because I am not sure how quickly they decide yes or no to surgery after this. I don't know if we will be spending Christmas in the hospital or if this will be something done after the first of the year.

I don't mind either way because becoming seizure free would be the best Christmas gift ever. I just don't like not knowing the laid out plans that can't be laid out with situations like this.

Its bed time......4:30 am comes EARLY and I am getting sleepy!

Goodnight all and I hope you enjoy the videos :)

 
 

3, 2, 1 ................BLASTOFF!

My mom wanted to make cookies with Jace's hand print in them but once she started she quickly realized it was a 2+ person activity. Jace is not really at age to truly cooperate. So when I made it home after my workout we made these hand print cookies! They came out MUCH cuter than we had anticipated!

The cutest hands ever!

Jace has learned how to ride on his rocket ship!!! He went to the moon and back for me! :)

I was so surprised when I put him on his ride on toy and he took off. Usually he would sit on it but tonight he actually started to ride it! This is a VERY short clip of that and later on he was riding his other toy better. I was too busy enjoying it to record him again.

I also caught a clip of Jace running some more and chasing his Dada. They were throwing the ball with each other. I just love to sit and watch those two play together. Jace loves his Dada and I can already see will be JUST LIKE HIM!

He tries SO hard to REALLY run! He really does.......I think he will have it down as soon as he gets a little more height on him.



Can you tell he has an obsession with lights and fans. He LOVES to look at fans! When we go to Lowe's or Home Depot he will break his neck trying to keep an eye on the ceiling fan department!

That's easy entertainment huh?

This weekend we are going to Lexington. JB will be hunting and I get to bring Jace to see his friends, Keely and Trey! Oh and I of course get to see one of my best friends too! Can't wait!

Hopefully I have some cute videos and pictures of the kids playing!

Pomegrante Craze

I have been on a pomegranate kick lately.....they are delicious!
Jace is just like his mommy and loves them too!
Although they cost quite a bit for fruit there are some good deals out there.

My mom said that Jace was looking at his reflection in the dishwasher when she asked him who that baby was....and he responded "That's Jace" and then walked away! WOW! My mom said she asked him to say "Peek a Boo" and he said "Boo". He said that once when we got home too!
We have been hearing him say things here and there that sound SO much like actual words but its hard to REALLY think he is truly saying things. I have heard him say "Right there" when we asked him where the little boy was in his book and I am pretty sure he said "Gamma" (Grandma) last night.
It's so neat to enter this new phase of his development. As much as I will enjoy him learning to say new words I worry about him copying peoples words that should not be copied!

Another great thing lately has been how easy its been to get Jace to sleep at night. I have been able to lay him down in his bed and he just put himself to sleep. I have to brag that this because we did achieve this WITHOUT having him cry it out or any other "sleep training" methods. I am truly a believer that sleep and babies putting themselves to sleep is a maturity thing. It is something I think they need to just "grow" into so I can see how some babies grow into it later than others - just like they walk and talk at different times, some later than others. We are so blessed to have it pretty "easy" in the sleep department.

I Am Feeling The Burn

I am feeling the burn of carrying a 27lb child for 3+ hours in my Seven Sling. I could be hurting worse had I not had the sling but I am in search of a better, toddler friendly, easier on momma baby carrier - a Moby wrap, a Mei Tai carrier....SOMETHING....anything else! He is too young to let him walk on his own and too heavy to not have assistance in carrying him. My left bicep, hips, and right shoulder are sore! I started to really feel them about 24 hours almost to the hour of when we finished shopping at the Nutcracker Market. The problem with the baby carriers that are comfortable AND can be used for children up to 35-40 lbs is the price. OMG - some companies are VERY proud of their products. I am possibly going to check out some resale shops or Craigslist. I would like to get something that is easy to use for quick trips but comfortable to wear for longer times he will be strapped to me.

However, I have to say that the only reason I was able to handle carrying him around for that long is because I have been going to the gym at least 4 times a week lately. Another plus to having my mom here to watch Jace is that I don't have to stop at a daycare to pick him up and I am able to squeeze in a quick hour workout at the gym with my workout buddy Patti. I am really feeling a difference after working out and now I KNOW its made a difference since I was able to endure having a toddler strapped to me for hours!

I have to say a BIG thanks to my mom for understanding and working with my work out time. Its great to be able to have that small amount of time just for me. It really does help to relieve stress and I can get in some socializing with one of my best friends!

Speaking of working out, JB has gotten back into the gym and he is REALLY doing well. He has built up a good amount of muscle and is looking good! I am very proud of him - he has really been working hard and getting results. I have to comment on how incredible of a husband and daddy he is. Even though he works out everyday on the weekdays he still makes time for Jace and me. He has never neglected his family life while trying to take care of his well being.

The appointment for tomorrow has been cancelled. I thought it was with Dr. Northrup, the geneticist, but it was suppose to be with the old neurologist we use to see in the TSC clinic. Since that was the case, it was cancelled since we no longer prefer to see her. We are resceduled to see Dr. Northrup on January 3rd.

I also cancelled this week's neurology appointment. Jace is doing so much better that I think it woudl be silly to pay $10+ for parking and have to buy lunch out to go to a doctor appointment for them to see how well he is doing. I can converse with her over the phone and tell her that. I know that she will be ok with that. I just need to find out now when we SHOULD follow up with her, if things do not go down hill again. I am sure we will need to see her before the Phase I evaluation....I think?

Here is a link to Jace's Seizure Tracker Graphs. This website really is neat - my mom logs his seizures and when I get home I put them in the website and I can graph the occurrences for his doctors to better see.

Jace's Seizure Tracker

As you can see on there, his seizure would get better or go away for a few days (usually a day after we increased his meds) then they would start to increase again. That is except for the past few days.....his episodes have decreased and nothing in his meds have changed. This is exciting!

I am starting to think maybe it took a bit for the medicine to really get in at this max dose and start to work on him. I think I can handle 3-5 seizures a day until we can find out about surgery candidacy....it certainly beats 8-11 seizures a day!