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!

Jace Finally Said Dada Again...

Friday night I got the opportunity to babysit little 4 month old Nathan.  Lisa and Josh needed an adult only date night. He was an ANGEL! I was able to go back and remember what Jace was like a year ago. It certainly was easy with Nathan partly because I had been there done that but also he is such an easy going little boy!



The handsome gentleman I spent my Friday night with!



Jace finally said Dada again!!! Praise the LORD!!!

Here is a short video clip of proof!

He seems to be doing very well this weekend with his episodes and with acting like any other 15/16 month old. It is so exciting to see that little boy shine through all that seizure darkness that goes on way too often.

I was playing with my video camera a lot on Saturday. Here are some more video clips I caught of Jace.

Jace playing with Lil Bit - She is starting to be more and more tolerant of toddlers. Good thing because she has her hands full with Jace in the house!

We are also having to watch Jace much closer these days because he is so close to really climbing....Thankfully he has not started climbing out of his crib just yet!

And along with climbing he is *THIS* close to actually running...he tries so hard. He really does but those little legs are just so short and don't seem to let him really get some speed behind them.

Jace's favorite bedtime story is Cuddle, a VERY cute book given to us by Diana. We read it every night and we have Jace point out the little boy. This night he decided the little boy needed kisses though :)

He is so sweet!

Today, Lisa and I went to the Nutcracker Market. We brought our little ones with us as well. I was questioning if we were nuts or just confident in our mothering. Who in their right minds would take a 4 month old and an almost 16 month old to the Nutcracker Market?

This "adventure" turned out better than we had expected and the boys did great!

We both had sleeping children despite having no strollers in the market. 

That was EASY! ;)

On the way home Nathan got a little upset and was crying....as you can see Jace didn't want to hear any of it. Lisa and I saw Jace covering his ears and we laughed SO hard about that. Eventually Jace covering his ears turned into him crying with Nathan. He must have thought " If you can't shut them up, then join them!"

Can someone please make him stop?!?!

 While at the Nutcracker Market I bought a plate that can be written on with dry erase marker. This plate/platter is to put Santa's cookies on every year. Since we can write on the platter Jace can write a letter to Santa on it and Santa can leave a note on it when he visits.

Cute plate for Santa's cookies

Looks Like a Normal Kid But....

"He looks like a normal kid but he just has seizures" 

This is what the neurologist told us today. She said the EEG still showed spikes just as it did in the past but the background is cleaned up very well. This means his brain is able to function properly MOST of the time making it possible for him to be like a normal kid. She said watching him that he looked just like her 15 month old so developmentally he seems to be on track.

She said its great that he says 3 words (regularly) at this age - I have been concerned about this.

We just wish he would say Dada again......I miss hearing that from him. It was always such a sweet sound!

She wants us to return next Wednesday to see her. However, if he is still doing as well next week as he is this week I think we will cancel that one and reschedule for the next for (for just in case). The parking at the Med Center can get very expensive! We still have to go there next week to the TSC clinic and see the geneticist on Tuesday. I hope that is the only trip we have to make there next week.

I was told the major signs to look for with Jace is ataxia - or basically walking like a drunk person, loss of tone, stumbley, etc.....you get the picture. He was like that until we started the Sabril. She said we would notice him not being himself well before the ataxia started BUT that once the ataxia starts we for sure needs to be concerned. Its good to know more signs to look for other than being cranky, sleepy and refluxing.

OH that's another thing! She is pretty sure that his refluxing is all intertwined with the seizures. Since he normally refluxes shortly before or after seizures they are more than likely correlated. I pretty much KNEW this but I thought it was more in line with the status epilepticus he could be in. After the past week I have come to see that he refluxes often with seizures and even more often when he is sleepy and has an episode.

I am getting ready to go to sleep now......Its been a busy day!

Good night!

Duty Calls to Share the Humor in Call of Duty

So I HAVE to share some of the funniest things about Justin.

He occasionally enjoys playing the new Call of Duty games when they come out....the best part of this is watching him play the game. He moves his head while playing the game as if he were actually trying to look around the corners or over a ledge.

Here is a short example of this:

The doctor's office finally called me with the information about Jace's EEG from last week.

It showed only a slight improvement from when he was last in the hospital and there was nothing on there that surprised anyone. This is partly good but also not good.....I was hoping for GREAT improvement with the Sabril being added since the hospital stay. The good part is that he was not showing in status.......the day AFTER we thought he was in status! UGH what an ER FAIL! They should have ordered a STAT EEG when I brought him in......not for the next day! Oh well, live and learn right? All I know is that he is still developmentally ok (not regressing) but has had an increase in the number of seizures. I have been logging them religiously on SeizureTracker.com and will have a report to print out for the doctor to look over.
We have his weekly neurology appointment tomorrow so I should have more info and other options to help control the seizures - hopefully!

I LOVE coming home to my smiley, sweet, cuddly, adorable baby boy! Even when his poor little teeth hurt him he is still happy as ever to see his daddy or me come home!

Favorite Bedtime Activity

My favorite part of Jace's bedtime routine - sitting on the floor and rocking him to sleep as he plays with my hair! What a sweet angel!

Bub-bub-Bubbles!!!

Following in his Daddy's footsteps

I caught a clip of Jace saying "bubble" when I was blowing bubbles for him. He has said this word for a while but I finally decided to catch it on video :)

He LOVES LOVES LOVES bubbles! Bubbles and the swing are my go to when he is fussy or bored. He also asks for bubbles sometimes. :)

I wanted to share the difference or improvement in Jace's seizures.

They used to be head drops with his eyes rolling upward and now they are just staring spells.

As simple and small these head drops look they are not simple and small in the damage they could/did do:

A week after starting the Sabril we stopped seeing head drops

(besides last week when my mom saw one episode of 3 head drops)

His seizures now look like this:

We can tell he is in one because its like he just checks out...he can sometimes still follow commands or respond to us. I think it just all depends on how bad of the episode he is having at the moment.

To anyone who does not spend most of the day with Jace, everyday, these could be easily dismissed. Also if you do not closely watch him all the time they can be missed. I am sure that JB and I have missed episodes before. Its nearly impossible to watch Jace like a hawk 24/7. I wish that we could.

I thought I would share what Jace's episodes look like for those that were curious.

Speaking of, today so far has been MUCH better than yesterday. I think this possible teething issue happening seems to flare up his episodes or it could just be perfect timing. We will see as the time goes.

All I know is every nap and every night lately has been a fight. He will start to fall asleep then wake up screaming - not wanting to be held and not wanting to be put down either. I miss my sweet baby boy that loves falling asleep in your arms without a fight. Last night and today I gave him Baby Orajel when he was fighting sleep and it seemed to help. I know its VERY early for 2 year molars but I am thinking he is starting on them. He has gotten all his other teeth early and quickly.

Its a rough phase but this too shall pass!

Jace Loves Scout!

RIP Jeri Foster

I am sad to announce that a dear friend and coworker lost her battle with cancer last week. She had been battling and winning her fight but the chemo proved too tough on her liver. It was a surprise to us all how quick she left. Her funeral was today and I had intentions of going right up until 5 mins before I had to leave. Between the doctor visits that morning, Jace being a little toot, being unsure which vehicle I was taking for the weekend and the overall stress of the current happenings I had to cancel going to the funeral. I REALLY wish I could have made it there. Jeri taught all of us girls how to crochet and was ALWAYS there for use without judgement. She was the strongest woman I knew who cared for everyone but herself.

Jeri will truly be missed forever by me and I ask for everyone to please pray for the peace of family.

RIP Jeri Foster - I know you are enjoying being back with your husband again! - Always in my Heart!

They just decided today they want us in weekly. We do not know about the EEG results yet but he looks better now (we increased vigabatrin to his max after ER visit).

Lately the pattern has been that he does great for 2-3 days after an increase then staring spells increase and he is not himself until we increase again.We have reached the max dose for his vigabatrin so the doctor wants us in weekly and we may have to play the medication game for a while. His body/brain is too "smart" and adjusts to the meds quickly. It'll be a medications roller coaster until we get Phase 1 started and hopefully remove the tuber.

We should hear from his doctor on Monday with the EEG results.

She also mentioned that we should expect, just to be cautious, that things may get worse before possible surgery. I pray that nothing gets worse and it only improves from here on out.

However, it is nice to be seen by his doctor weekly. This really does help with having a better peace of mind.

Jace has been teething his last "canine" tooth and it seems to be giving him - and us a hassle!

For snack today I gave him a plum....he LOVED it and devoured it! LOL

 

Here is the beginning of the plum devouring

And this is after the mutilation of that poor plum

Jace did the cutest thing today - he was dancing with this toy Scout!

 

Time for a Haircut?

We had the EEG today and I hope that things are not what I fear. 

I am pretty sure that everything will be ok with today's EEG.

I really wish that they would have done the EEG yesterday.

To get this EEG done was almost an act of congress. I am glad it is over and done with. 

It was a long, busy and VERY frustrating day. We were not told what time the EEG was until almost 2 pm and we had to be there by no later than 3 pm. By the time my mom got to my work to pick me up and we got to the hospital it was 2:50. After the admitting staff took ages to get us checked in I was getting livid. From my understanding we HAD to be at the EEG department before 3 and no later. Once speaking to the EEG techs I found out that not only were they not too upset that we were running behind but that they didn't know why we didn't get an EEG done yesterday in the ER.

 We have an appointment with his neurologist tomorrow morning at 8 am.

We should know how the EEG went by then - I HOPE!

Jace was VERY cranky on the way home today - this was NOT good since we were stuck in 5pm traffic on 290! YUCK! No FUN! Needless to say I was FRAZZLED by the time I got home!

Jace was much happier when we got home.

I had to snap a shot of Jace's hair when he was in his bath.

Look how LONG it is! I think we are about due for a haircut!



Time for a haircut?

Thank God it looks way shorter when it dries!

Jace must have hit a growth spurt recently. He is for sure in 18 month clothes, even in pants.

The length is a LITTLE long but for the most part fit him.

Where is my BABY going?

Teach Your Child Self Control

Last time Jace was in a non-convulsive status epilepticus state no one was aware until they read the EEG. Looking back the only clues were had was excessive spitting up, not being himself and sleepy. His neuro told us to look for these signs and call her or bring him in if we are concerned.

After noticing Jace refluxing and not acting himself the past couple days we decided to contact his neurologist to let her know. She told us to contact her since she would be able to get an outpatient EEG set up quicker than for us to go through the ER, unless it was afterhours then we were to go into the ER. Well I contacted his doctor’s nurse and she paged the doctor. The nurse called and said if she doesn’t call back in 10-15 mins to call her back. So I wait 30 mins, no call back so I called the nurse and left a message again. I received no call back after that. Actually I received no call back from his doctor at all that day. Once I got home I got Jace ready and we went to the ER. I understood that getting him in for an EEG was the route to go. It would be easiest to go through the doctor but I had to do what I could. We went to the ER at Children’s Memorial Hermann and they checked him out there. To make a long story short, the doctors on call do not know Jace’s history which is complicated, complex and lengthy. After they told me they were just going to discharge him and brought me paperwork about fussy babies I just about lost it. I told them I was NOT comfortable just going home and nothing being done. Finally a neurologist called the attending AND Jace’s neuro. His neuro felt that Jace could wait until the next day to get an EEG done since at this point it was after the EEG department was closed and his state was not “emergency” enough for a STAT EEG. His neuro wants us to return for a routine EEG tomorrow and a follow up appointment on Friday with her. We agreed to this and were discharged. What really got me was that the ER still discharged Jace with a diagnosis of a fussy baby. ARE YOU KIDDING ME?!?! I literally was sent home with paper work on how to handle a fussy baby. He was brought in for epilepsy or seizures – not because he was “fussy”!

My mom and I were laughing about this. How ridiculous! We were reading the discharge paperwork and it says “Teach your child self control. This way they are responsible for themselves. Teach them to breathe slowly when they are upset. Teach them to relax and thing about something peaceful or calming like petting a puppy or kitten or something that make them happy. Praise them when they calm themselves”

So, I guess we should teach Jace self control….I mean being fussy when he is having episodes is not acceptable! *eye roll*

In the end, I am a little perturbed about all of this. The ER visit, the doctors brushing off the possible situation and most of all - his doctor never returning my call yesterday.

I do not know what time the EEG will be but I will update once I get more information.


OH and to add.......they did tell us to increase his Sabril to the next dose up.
So starting last night he has reached his goal dose of Sabril.

Jace's 1 Year Pictures

We got Jace's 1 Year Pictures back from Lauren - check out her site here: Like a Bird Photography

Even though Jace was not doing well with seizures - we were not aware of how bad at this point - she still managed to capture priceless images of him!

These pictures were actually taken the weekend before he was admitted to the hospital in August.

This one cracks me up! He looks like he is thinking WTF?



Mischievous!





Eye Yi Yi Exam

Oh - an apple all for ME?!?!?

I was always curious how Jace would do with a full piece of fruit to snack on. I figured I would start the apple for him but he proved to me as he went on eating it that doing that was not necessary LOL 

What a big boy! He loved eating his apple on his own.....then throwing it like a ball!  

The. Best. Snack. Ever.



Halloween was fun and easy going. We went to Aunt Kiki's and Uncle Nathan's House. There was a parade, a party at the clubhouse and then we ate fajitas at their house. After the fajitas it was trick or treating time, however Jace was on the edge of being flat out E.X.H.A.U.S.T.E.D!  So, we decided to skip the trick or treating and went home. He did get some goodies - chocolate chip cookies! He LOVED THEM! We won't be able to get away without trick or treating next year I bet!

The best part of Halloween was watching Jace literally chase Lincoln! Jace was trying his hardest to run and all. His legs are just so short and chubby LOL He had a blast playing with Lincoln. We can't wait to get him back into daycare to have kids to play with. For now it is best that he is at home where we can monitor his seizures but he will be back to daycare and socializing SOON!

Best picture we could get - he was on the MOVE!

Fast Moving Dinosaur!

 When we made it home Jace was OUT! He was plain ol' played out! He didn't wake up until he hit the water in the shower. After that I decided any other special nights like this we would skip bath because he was SO tired and that 20 minute nap before shower was more like an energy booster making it difficult for him to fall back to sleep for the night.

Big Boy Played Out!

Notice the pacifier shaped ring of chocolate around his mouth!

Today was Jace's first eye appointments required for taking Sabril. They require you to have an eye exam within the first 4 weeks of starting the medication and a follow up every 3 months. Unfortunately, they are not able to do a vision field test on Jace due to his age but they can test that he follows the light and look into his retinas. Poor baby had to get his eye dilated today for them to check his retinas BUT he did great! After getting the drops he pretty much slept through the exam after that.

The good news is that Jace has no retinal involvement with TSC. There can be retinal lesions and they did not see ANY! SCORE! Jace is actually a pretty simple TSC patient. He has skin and brain involvement. Thank God he has no heart, renal, retinal or any of the other possible manifestations that are possible. We are blessed that his is "simple" - if you can even call him that! LOL

It also looked like Jace's peripheral vision, from what they could test, seemed to be unaffected. He saw the light by the side of his head fine and I pray he continues to keep his vision!

Last night we noticed that Jace had a small bite by his left eye and thought nothing of it. He was not complaining of it and we figured it was a mosquito since they normally looked that red when he gets them.

Even this morning it looked fine but by the time I got home from work it was all swollen, hard and starting to swell his eye. This is not a great picture of it but you can kind of get a view of it. It looks so much worse in person. Since it bothered him at nap earlier we attempted Benadryl (after calls to the pharmacy to be sure there were not interactions with his meds) and praying the swelling decreases.  

Jace was being silly at dinner and I felt like playing around with my new birthday present JB got me!

(Thank you baby) So enjoy the silliness of Jace and his activities while eating dinner!

I must add that not only did I get this awesome video camera that CAN go under water but I got a MixBook that JB made of Jace's first year! OMG! It was SO incredibly sweet! I loved it and I think I can look at it everyday! :) That was by far the best gift ever!