Grid Placement - Day 2

Last night was way better than the night before but it was still very interrupted. Its to be expected...

It seemed like the nurse was in almost every 2 hours for something. 

Good news - both Dr. Von Allmen and Dr. Tandon agree that Monday will be the day for his 2nd surgery. They are seeing that the seizures are only coming from the front tuber on his left frontal lobe. There are two on this left frontal lobe - one in the front right above his eye and one by his left ear. This is GREAT news! We are happy that the seizures are focal and again this is another prayer answered! Keep them coming! 

The anesthesiologist stopped by and said his surgery is scheduled for 9 AM on Monday - we all know how the schedule goes so it will be sometime before or around lunch time. 

After that we pray that all goes well and we are home on or before Thanksgiving Day! 

Our biggest challenge has been Jace taking his medications. 

He has ALWAYS been willing to take anything that was in  a syringe - even ASKED for it. 

Since yesterday, anything in a syringe has been refused. We have tried holding him down and putting it in the back of his mouth but its no good, he just spits it all out. This is VERY frustrating. 

His pain medications is an oral medication. They have morphine in an IV but we are trying to get away from that since its so strong and rough on him in the long run. 

We tried mixing his meds with juice or milk in his sippy cup, he takes a sip and won't drink anymore - unless we are lucky. We would try applesauce or pudding but he refuses to eat too. 

Today all he has eaten are crackers, string cheese, strawberries and some teddy grahams. None of these can have crushed pills sprinkled on. 

Luckily when he is asleep I am able to give him his home meds (seizure medication) but he has to be dead asleep. He will still instinctively suck in his sleep and I guess he is used to the taste of his usual meds. 

I thought I would try this with his pain meds but he took a tiny sip of it, woke up and spit it out. :( 

Justin and I are done with holding him down and forcing meds down his throat. We have decided if they want him to take something and he won't take it with our "tricks" they will have to hold him down and give it. (something I really want to avoid so he is not scared to take meds forever)

On to good stuff - he was in a good mood this morning and was smiling and playing. 

Saying "Cheese!!!" 

Sweet smile on Mommy's lap

You can kind of see how bald he is now :( 

I miss those cute curls but they WILL be back. 

Actually when we changed the dressing today (another thing I dread to do) his hair had grown so much since yesterday. It's like he has miracle grow in his scalp or something LOL 

I had forgotten that they will have to shave his head again for the next surgery but now I know it will grow back fairly quick! I can't wait to see those curls again! 

An EEG tech stopped by and gave Jace a stuffed kitten - black and white. He didn't want it at first but once I took it out of the box he asked to have it. The tech said that another parent of a little child who had this same surgery bought a bunch of stuffed animals for other children who are having the same surgery done. How sweet is that!?! Jace really started to like his kitty. We brought his teddy but he puked on it Wednesday night and we have not done laundry yet so he has been without. I am happy to say that the Kitty has be a fair replacement for now. 

Sleeping on his kitty

Jace was sleepy most of today but didn't actually sleep much. He would just lay there and rest...I guess its better than the alternative. He is sound asleep right now as I type and I hope he is like that for the night - or at least most of it. 

Justin's brother, Nathan, stopped by to visit this morning and Jace was EXCITED to see his face! :) He loves Uncle Nathan! Nathan is looking into getting some of Jace's tuber to do some research on it. He has been working with another doctor who researches TSC and Nathan has a personal interest in it too. Hopefully the doctors can get together and allow Nathan to have a bit of the tuber to do research on. It was nice that Nathan stopped by - he had a LONG day ahead of him. Between work and interviewing medical school applicants then heading to San Antonio to pick up Papa Bryan!! That's right - Papa Bryan FINALLY got out of the hospital today!! He went home today and I can't wait for Jace to be healthy enough after surgery to go visit him! I don't know if we will be able to peel the two off each other LOL 

Speaking of research, I signed a consent with Jace's geneticist to allow them to use the tuber for research. Dr. Northrup is trying to get the term TSC3 approved. Right now there are only 2 versions of TSC that are "verified" all others that are not considered 1 or 2 are put said to have TSC but that is it. With the mutation that Jace and I have we do not really qualify as TSC1 or TSC3. They have been seeing a few other patients with TSC that are presenting in other ways than those 2. With more DNA on hand and research, Dr. Northrup is hoping to get a TSC3 named. 

This afternoon my mom and dad came to visit. Jace was happy to see his Grandma and Pawpaw. They played, talked and Jace loved on both. At dinner time my parents stayed with Jace while JB and I went to eat. We walked down to Chipotle - it was DELICIOUS!! Thank you SO much Kristen and Nathan for the gift cards! We have been eating either hospital food or a casserole that Lauren brought yesterday. This was a nice change and a good chance to get out for fresh air. 

Thank you Mom and Dad for the break! 

WAY better than hospital food! :) 

Grandma rocking Jace - he was so comfy on her! 

Grandma brought Jace some magic markers and paper to color on. Markers that only make color on the pages made for them. Crayola is pretty genius in some of their products. 

Jace had colored earlier but JB took a little break to color too :) 

We can thank Jace's Prayer Posse enough! Keep those prayers going! 

Not only for Jace but for JB and I. This is not easy as parents and we have our moments. 

Thank you! We love you all! 

Grid Placement - Day 1

Last night was no fun but it could have been way worse.

Jace ate some Jell-O last night but later puked it all up. This was expected since anesthesia can cause this. There was really no warning that he was going to puke so it went all over his bandage, right arm, and his teddy bear. This was also after giving him his medications so he more than likely was without meds last night. 

After that he received his pain meds the nurses asked if I wanted to hold him. I was excited to get to hold him so soon but was concerned. There were so many wires everywhere - on both sides of him - and then the wires in the head....I was overwhelmed and scared to take him out of bed. They helps me get him out and I held him for about 30 minutes.

He was crying in pain but soon fell asleep

At this point the end of the rough night was to an end. He shortly woke up fussing and we tried some anti-nausea medication and that worked. He was out at 2 am and slept until 6 am (as did I). 

Right when we woke up JB walked in. He was happy to see Dada. 

That room in the PICU had the perfect angle to get a lot of light in - even with the weird shape of the room. 

Eating Ice Chips and sitting up on his own! 

We were told we would be in the PICU for 24 hours so we were taken by surprise to be moved to the EMU at 9 am!! This was great because its less noise, less interruptions, less wires and most of all we get to start recording the seizures!!! 

Jace had to recovery from the surgery in the PICU before they could hook the wires up to a machine that records the seizure activity. The wires are very similar to an EEG and works the same. 

We were given one of the BIGGEST rooms in the EMU and have a couch that actually makes into a bed - rather than just a chair that makes out into a small twin (if that) sized bed. Jace has his crib and we have a bed that will fit both JB and I on it. 

Justin's cousin Lauren stopped by with a casserole, muffins, drinks, plates, cups, forks, and cookies for us! 

This helps out SO much! The EMU only feeds one caregiver so the other is left to go buy food or starve LOL 

Having these meals brought to us is a great help not just financially but mentally - who doesn't enjoy a nice home cooked meal? :) 

Spruced up the room a bit! 

Thank you Aunt Mitty, Uncle Zane, Shelby, and Jordan!! 

Also, thank you Patti for the awesome scriptures and pictures for our room! 

We finally got Jace on another longer lasting pain med that he has to take orally. The bad thing about this is he is fighting us to take meds today! This is SO not like him. Typically if its in a syringe he wants it! :( 

We will see when I give him his meds tonight if this is a new "issue". He is probably scarred by all the syringes and such coming towards him. Poor guy! I don't blame him! 

His pain seems to be managed much better this afternoon. 

Shortly after we made it to the EMU they had to redress his bandages. It was exciting yet scared to get a chance to see what the battle wounds looked like. Surprisingly they didn't look near as bad as I expected. 

I took pictures but they are not anything that will be posted. 

Jace has had 5 seizures so far since he has been hooked up. They were all while he was sleeping except one. Not one of these did we notice anything at all! This helps reassure me that we are doing the right thing! 

He is having seizures that we don't see and they are while he is sleeping too. 

We saw our sweet baby boy today. He gave us kisses and played peek a boo! He laughed a few times as us and we got quite a few smiles! 

Jace was starting to get restless so we let him play on a freshly cleaned play mat. Yes - he actually got out of bed only a day after surgery!!!! This is crazy to me! 

Earlier the EMU staff had mentioned that he is recovering perfectly - they could not ask for it to go better. 

We are thrilled to hear this and pray that it continues! 

This news is proof of answered prayers!! 

Thank you thank you thank you for the prayers! 

Keep them coming! 

With the way Jace is having seizures they could do surgery earlier. If tomorrow was not a Friday I could almost bet we would have the 2nd surgery done within the next couple days. But since the weekend is starting  we think the 2nd surgery will be on Monday - rather than Tuesday or Wednesday! 

We ask for continued prayers - prayers that his seizures are so precisely focal that the part that needs to be removed is crystal clear! Also, for a quick and easy time before, during and after the 2nd surgery! 

And the ultimate pray we ask for is for Jace to be seizure free 100%!!! 

We KNOW God is working on that little body of his! 

Sorry if this was all over the place. I am pretty tired and I am ready for the day to be over with. 

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.