Jace's Grid Placement Surgery

We woke up at am and headed to the hospital. We got here 15 minutes late but it didn't seem to be an issue. 

Arriving at the hospital

Reading and waiting

At 6 we were brought back to the 2nd waiting area and gave Jace a sponge bath with this antibacterial stuff. 

After a while he got cranky and asking to eat. Jace sure does have his daddy's temper when he's hungry!

So fresh and so clean!

They give the little guys something to help calm their nerves (and ours).

I am not sure what it was but they call it "Spider Man Juice" LOL

It took about 15-20 minutes and Jace was as happy and silly as can be!

Silly faces!

We have such an incredible church family!

A youth pastor from our church came by to pray and drop off goodies for Jace.
Thank you SO much COF Kids!!

Chris Norman from Community of Faith

They needed to do a CT scan before the surgery to help with navigation. We knew Jace would not lay still for this so we opted to have him under anesthesia for this as well.

They took him back to the CT scan around 8 am and we left the room before they knocked him out.

This was the hard part! We won't see him again until the surgery is over.

JB and I had our tears but I have to say so far we are handling things well. (Its still early in the day!)

At 8:28 they were done with the CT Scan and had Jace in the OR. They said it would take about 1 1/2 to 2 hours to prep him and get started.

JB and I went to get breakfast and came back to get an update. We called Gigi the the OR liaison and she said they started surgery at 10:15 am and everything is going well.

I will post updates on this same post throughout the day as I can......

Thank you for the prayers without ceasing! We love you all!

UPDATE #2 - 12:16 pm - electrode grid began to be placed at 11:45. Everything is still going great! JB and I are eating lunch at Chick-fil-a at Texas Children's.

JB napping before lunch

UPDATE #3 - 1:02 pm - Dr Von Allmen called and said the grids are placed and Dr. Tandon is just closing him up now. It should take about an hour and he will be in recovery. Dr. Tandon or his resident will come speak with us at this time and then we will go see Jace.
We will be in the PICU tonight the be transferred to the EMU tomorrow.


UPDATE #4 - 2:40 pm - Dr. Tandon came out and talked to us. He JUST finished with Jace. They are taking his down for another CT scan. They places 2 grids on the left side. He is pretty confident that Jace has enough seizures to get all the info they need by Friday or Saturday so we may get to do Part 2 on Monday (rather than Tuesday).
We will get to see Jace in about 20-30 minutes!!

UPDATE #5 - 3:15 pm - the anesthesiologist stopped by and said Jace was stable throughout the whole surgery!! I just know God had his arms wrapped around him! They didn't have to give him any blood but will watch him for the next day. He may or may not need blood tomorrow.
And we are STILL waiting to go back at see him......typical "doctor time"

Sweet Jace in recovery

Not as swollen as I had expected but it will peak in 2 days

UPDATE #6 - 4:25 pm - We just moved up to the PICU. They are getting his monitors all hooked up and then we will be brought back to his room. Have has moved all his body parts, whined and opened his eyes for us! he did not look nearly as swollen as we expected but I hear that is to come - 2 to 3 days post op it is supposed to be at its worst.

Thank you SO much Lisa for making Jace a soft minky blanket. 

He seems to appreciate it more than the scratchy hospital blankets

UPDATE #7 - 8:50 PM - This will probably be our last update for the night. We are going to get some rest while we can. Jace has woken up some and was given pain meds as needed. I fed him some Jell-O and that made him nauseous - so he got some anti-nausea meds as well. After that he was pretty sleepy but was still waking off and on whining. A lot is from the anesthesia wearing off - all little guys like him are cranky then.
We have sat him up a few times and he likes that. He has moved all body parts - fingers, toes and all - and has said Dada, Mama, Up and Please! I know the grid placement doesn't really affect his motor or language skills but you never know when it comes to messing with the brain!

We got a room at the Ronald McDonald House! JB will stay there tonight and will switch off with me if I feel I need a break. I did go in there first and get a shower and while I was in there I made JB's bed for him :)
The Ronald McDonald House is such an invaluable resource for parents with children in the PICU! Some have been here for WAY too long but you can tell how grateful they are to have a place to rest and recharge.

I will try to update more tomorrow as I can. We should move from the PICU to the EMU sometime tomorrow but then again that is all dependent on how well Jace is doing. So far he is doing great - everything is going as it should!

Love you all and thank you for the continued prayers! 

Surgery Details

The hospital called today to give us all the details.

We will check in at 5:30 am at Pedi Day Surgery at Children's Memorial Hermann Hospital.

The surgery is scheduled for 7:30 am and we were told it will last 7 1/2 hours.

This does not include recovery time so tomorrow will be a long day. 

Please pray for Jace, his surgeons, the doctors and all the nurses that will be invovled in Jace's care.
This is our first step towards Jace becoming seizure free!!!
There are so many emotions that we are feeling but we know God has this in control!

I will try to update as I can during the surgery or after.

We apprecaite all the prayers and love you all!

A Day of Rest

So the one thing the pediatrician told me to look out for with Jace's head injury was vomiting.

Well, at 11 pm last night I woke up to hear Jace crying - sounds more like a scared cry - and I go to him room to find puke all over his bed. Poor baby!

I didn't think much of it since it was just once and honestly one time vomiting isn't a concern. The pedi was more concerned about persistent puking.

I got Jace's sheets changed, his PJs changed and was rocking him back to sleep when he puked again - ALL over the place! It was projectile and I was covered on my whole right side of my body! YUCK! I think I will be staying away from peanut butter for a while - that's all I could smell! BLAH!

After he puked this time I knew it was time to go get him checked out at the ER.

Justin took over with Jace while I cleaned myself off and got dressed to go. While I was doing that Jace puked again! :( I was starting to really get worried!

We grabbed towels, extra PJs and we headed out.

Jace puked again right before we pulled up to the hospital. 

I knew they were going to need to do a CT Scan but they also requested a strep test since his throat looked red. I was pretty certain that he did not have strep since we JUST finished antibiotics 2 days ago for a sinus infection that took FOREVER to beat.

I was planning to be sitting at the ER for hours! We let Jace play as he wanted (to an extent) and tried our best to go with the flow. They got Jace back for the CT Scan pretty quickly and they told us it would be 2 hours before we had results. Yet again we were dreading that wait since it was already 1 AM by this time.

About 20 mins later the dr came in and told us that the preliminary reports came back clear!

What GREAT NEWS!!!

 I was so relieved to know there was not anything bad going on with Jace's Goose Egg!

This was just a tummy bug with VERY cruel timing.

Even though the timing was cruel it was also somewhat good.

I think it did Jace good to be home all day one day and do nothing. We didn't change out of our PJ's all day and only went outside to check the mail.

I know I needed a day like this - more than I admit!

God knew what He was doing!

Relaxing on Mommy!

Jace's Goose Egg still looks just the same......pretty much.

There was a small scratch that scabbed up. I am finding out that Jace likes to pick at scabs! YUCK!

I REALLY hope this is just an age thing and he won't grow up always picking his scabs!

Jace is SO close to jumping and he tries to jump when he is dancing. :)

We were watching Mickey today and he was dancing to the Hot Dog Dance......Its too cute not to share!

Jace Was Goosed!

Goose Egged that is!

I got one of those calls from the daycare that make your heart drop this morning. I

t was the director and scared the poop out of me! 

Jace hit his head while playing outside and it swelled out of his head. That is good but they were concerned about this since he has seizures. Also, after the head bump he was unusually calm. That had them worried.

JB went to the daycare to check on him and he sent me a picture of the boo boo

Not a great picture but you can see the Goose Egg on the left side of his forehead.

JB wanted to check with the Neurosurgeon if the would be a reason for concern come the day of surgery. I called and they suggested we take him into his pedi to see if they felt he needed a CT scan.

So off to the pediatrician we went....

When I picked him up from daycare for the appointment the knot had gone down quite a bit but I took him in anyway. The pediatrician gave him the all clear. What a sigh of relief that was!

Its crazy to think that his surgery is only a week away. It feels like forever away but then again as each days passes its gone by TOO quick!

We have gotten a maid set up to come in and sanitize the house so when Jace returns home there is less of a concern about infection. Along with this, JB and I have decided to not have visitors at the house the week we return home.

Visitors at the hospital are different - his head will be bandaged up. When we go home those wounds will be exposed. Maybe we are being overly cautious but Jace's health is nothing we will put lightly.

And we would like visitors at the hospital with the exception of the days of actual surgery. Jace will be going to the ICU those nights and there is hardly any room for both parents - much less visitors. Also, during the waiting time for Jace to get out of surgery we don't want people there. I don't want to feel that we need to socialize or entertain. JB and I will be there for each other and ask that time to be for us.

And now to close this with some cute Jace pictures and videos

Being silly and roped to the chair at lunch time :)

Jace loving the Buzz doll he got from Grandma!

Buzz goes well with his Woody doll!

Thank you Grandma!!!

Running the bases for the first time! Not too bad - I think we may have a baseball player in the making!

Jace showing some of his mad dance moves!

Jace has started to yell for Toodles (Mickey Mouse Clubhouse)

Keep the prayers coming! We love all of you!

Jace's Prayer Posse is growing and strong!

Our War Path Against Seizures

We are on the war path to battle Jace's seizures!

Jace is scheduled for surgery on Nov. 16th and Nov. 22nd.

We have known this was a possibility for some time but now its real.

Jace had an EEG done in August to see how his seizures have changed - if at all from December.

We received the results and found that there was no great improvement and very little change. The only real change seemed to be that the focus of the seizures were clearer.

With these results Dr. Von Allmen suggested that it was time to discuss surgery.

We trust her opinion and we met with her to discuss. She referred us to the neurosurgeon, Dr. Tandon.

We met with Dr. Tandon and discussed the options.

He said we can do grid placements, depth electrodes, or none of these and just remove the tubers.

After he met with the neurological panel and discuss Jace's case they all agreed that he needed to have the grip placement done before the resection.

In their terms this will be Phase 2 and Phase 3 of epilepsy surgery.

Basically on November 16th Jace will have grid electrodes put on his brain in the left frontal area.

This is Phase 2 of the surgery.

This is what the grids look like:

The flat part will be on the surface of the brain and the other end will be connected to wires (just like an EEG would be). This will map his brain precisely. Having this detailed mapping will ensure that no part of the brain will be removed that is essential or that is not causing seizures.

He will have to keep this on the surface of his brain until the 22nd.

On November 22nd we will start the Phase 3.

They will remove the electrodes from his brain then remove the area of the brain that is causing the seizures.

We were told we may be able to come home with in three days as long as all goes well.

We will miss Thanksgiving but this will totally be worth it.

As scared and worried about this whole ordeal, we are excited.

We are excited to see that little boy emerge out of the seizure land he has been stuck in for WAY too long! 

We ask for everyone to pray for Jace, the doctors, nurses as well as Justin and me.  

*KNOCK KNOCK* "Teet Teet"

HAPPY HALLOWEEN!!!

We had so much fun taking Jace to Trick or Treat!

He enjoyed it MUCH more than I had anticipated.

After he had a party at daycare and was pumped up full of sugar we took him over to our friends, Ryan and Becca, house to trick or treat.

Their little boy, Nick, is 6 and Jace loved that he got to Trick or Treat with him!

Jace went as Buzz! We almost didn't find the costume in his size. We just by chance found it in a 3T which I thought was too big for him. It was but with clothes under it the costume fit great!

The cutest Buzz on the block!

To Infinity and BEYOND!!!

Nick the Texas Football Player and Jace as Buzz Lightyear!

C'mon.....You ready to go?

After about 2 houses Jace got the hang of this trick or treating thing.

He did well staying on the sidewalks and following Nick to the doors.

Nick rang the doorbell and Jace knocked. After a while Jace's knocks sounded like he was taking the doors down and were pretty "as a matter of fact you will open this door". HA! He is a ham! 

Three times, Jace knocked on a door, they opened the it and Jace just walked right on in! LOL He is a little TOO friendly for his own good!  I am STILL giggling about this when I think about it!

He walked in like whats going on in here.....where the party!? He is so silly!

Apparently Jace is NOT fond of skeletons and other scary looking "things". I don't blame him and to be honest there is no need to enjoy those scary fearful looking creatures!

The best part was he tried to say Trick or Treat. It sounds more like "teet teet" but he said it at a few of the doors and even attempted to say "thank you" (when prompted). Also, he carried his pumpkin from house to house pretty much the whole time. It started to weigh his down so we carried it some for him. Overall he understood he had to carry his pumpkin to the door to get candy in it.

I don't think he realized it was candy - he was just excited he was getting stuff put into his pumpkin! :)

After about 30-45 minutes of Trick or Treating we were rounding around back to the house and Jace decided to just sit down on the sidewalk. He had enough! LOL I don't blame him, he was toting around his pumpkin which by the end of the night was about 5 lbs!

We got home, changed for bed, and he was out! This morning was a struggle for him to get up!

I think he would have slept all day had we let him.

I wonder if he is expecting to get to go Trick or Treating again tonight!

Hopefully soon I will be posting about some big things going on....but for now I will leave you wondering!

Fall Time Finally!

 Remember the pillowcase I made for Jace with the help of one of my BFFs Lisa?

Well after that, I was hooked! I really like sewing!

I was going to save up for a machine and all the notions but JB surprised me and said a sewing machine could be my early birthday gift!

He is WAY to good to me! :)

My first sewing project were some stay-put kitchen towels.

I made these fairly quick and they were so much fun to make!

There were flaws and I admit I goofed up more than I should have but Misty loved them!

And THAT is all that matters! :)

Piecing the parts together

Finished product! I made 2 because everyone needs TWO towels for the the oven handle ;)

Jace's school had Fall pictures.

I took advantage of the cooler (under 100 degree) weather to dress him in jeans!

He looks like a little man!

Hey Jace - QUIT GROWING UP SO QUICK!

- Love Mommy

 Looking JUST like Daddy!

We took Jace for a ride on Uncle Marty's Gator to check JB's deer feeder.

Jace LOVES this thing! Maybe one day we can afford a Ranger - with 4 seats and seat belts!

The following Saturday Jace and I went over to The Schumpert's house.

The kids played and we had dinner! :)

JB was visiting his dad in San Antonio ( I will get back to that later) so he didn't make it to the fun.

BANG BANG!

I knew one day I would find Jace sleeping somewhere else than his bed - and I did.

He likes to look under doors lately so I can bet he woke up in the middle of the night, played a little (b/c his room was TRASHED) and checked under the door to see if Mommy was around to join in on the fun. LOL

At Jace's new daycare they have started having Jace drink out of a big boy cup.

He has picked up on this SO well!!! I am so proud of him. He hardly spills it and when he does he tries to clean it up. :)

  So back to JB's dad...the big picture is he had surgery, the doctor told him to use a heating pad, he did and received 3rd degree burns! Keep in mind JB's dad has been paralyzed from the waist down since JB was one. Most with common sense would not tell a paraplegic to sit on a heating pad. Anyways - the damage is done now. He was sent to the burn center in San Antonio where he is getting great treatment.

We KNOW God will heal Ronnie and will give him the strength to get through this.

The best part is that he is cooperating with the doctors and treatments.

Ronnie is a very strong man that never lets anything get him down! It is very admirable!

We need him to get out of the hospital healthier than he went in there!

This fall and winter are going to be busy and I know he is going to want to be a part of it all.

PLEASE pray for Ronnie!

Pray that he will heal up perfectly and is out of the hospital in a miraculous amount of time!

Pray that he stays strong and no further harm is done.

 Pray that justice is done for this situation.

 

Bring the Rain

Labor day weekend was full of fun!
We went out to Justin's brothers barn where they had a get together/BBQ. We had a couple friends from Houston come with us as well. We all had a blast and the kids did as well.

At Marty's barn there are ALWAYS horses! Now that Jace is getting older and more into animals I thought it was a perfect time to introduce him to the horses.

First we put him on Bulls Eye. He was a little apprehensive but he did well for the first time on a horse :)

After a go on Bulls Eye, JB hopped on Nacho and we put Jace up there with him.

That is one proud little boy :)

Sunday we had Justin's other brother over for dinner and to watch some college football.
Jace and Lincoln played so hard! They are boys and they are rough but they play very well together!

Jace was trying to fix the wheel on his wheelbarrow with his screw driver.

After working on his wheelbarrow he picked up the guitar and it was time to jam!

He LOVES to bring me the guitar and dance but this time him and Lincoln played it.
They started to really dance and get down to the music.

Sorry for the shakiness but I was laughing SO hard at Jace's "moves"

WE are SO close to being finished in the barn. We just have the trim and baseboard to sand and paint.

It minor details that make a HUGE difference. Doing these little jobs are not easy to do with Jace there but sometimes we can get him involved. :)

Daddy got him to help him sand the baseboards to be painted.

Wonder if he will have the same great building skills that JB and his Papa have?

On to much sadder issues.....the Texas Wildfires!

By Monday, we knew about the Bastrop fire that erupted over the weekend and realized how devastating it quickly became. I did not even imagine it would happen to be an issue all over East Texas.

We made it home and were getting ready for the next work week. JB stepped outside and called me outside.
We smelled smoke.........and then I was looking around and started to see ash falling like little snowflakes!
We looked around and saw the smoke plumes coming from the Magnolia area.
The media was not quite onto this fire yet so the unknown of the smoke smell and ashes falling frankly had me freaked out! We left the house for a bit to get dinner and when we returned more info was out about the fire in Montgomery County. This was about 15 miles away and as of today it is still burning. The evacuation areas extends to 7 miles away from us but the fire itself is not near. (I don't believe)
We are prepared to evacuate should we need to but I have a feeling we will be fine - as long as the winds don't pick back up and they continue to keep it contained.

This fire alone has cause smoke to spread MILES and MILES away down south!
We even smell the smoke and see the fog like haze in Katy.

The smoke plumes we saw Monday on the way back home from going to dinner in Cypress

The road that goes to our neighborhood - too close for comfort!

We NEED rain! A slow steady heavy rain!
We pray for rain and we will continue to pray for rain and for relief of the fires.
We also pray for peace to come to those families that have just lost EVERYTHING!
This is so sad to think about!

I heard back from Jace's epileptologist on the EEG results. It is just a preliminary report but he is still showing abnormal discharges in the left frontal lobe and at times the right as well. It sounded like there really was no change from December besides his right side not having as much abnormal activity.

At this moment I do not know what this means as far as a plan of action. We are going to wait for the official report of the EEG to be completed and then go from there.