It's Beginning to Look a lot....

 ...different around here. Jace is a completely different child!

I mean different but not really different. We saw this little boy in short spurts before but now he is that little boy ALL.THE.TIME.

We are loving it!

He tries to sing with every song that catches his attention - whether he knows the words or not, he calls for Daddy and is interactive all day long.

We have noticed that he is sleeping SO much better as well. He has been sleeping 11+ hours every night and today he took a 2 1/2 hour long nap as well! I really do hope this continues.

It seems like the seizures may have been really messing with his sleep.

Jace's incision is healing up very well and today he has only had ibuprofen once.

He did so well the day after we came home that we took a quick trip to visit family in Lexington.

We were not prepared for Thanksgiving so we were excited to get to enjoy some turkey and see family.

We were not in Lexington long. Between Jace hating too many people being around after the hospital stay and his not being able to get down and run with his cousins, he was not too happy so we went home.

We made it home to watch the Longhorn vs Aggies game. What an incredible game and I am going to miss this Thanksgiving tradition.

Jace rooting for those HORNS!

On Firday we ventured out to the stores. Not early but before some of the good sales ended.

Jace napped while we were out. He did so well while we wene store to store. :)

Snoopy came on Friday night and Jace seemed to enjoy it just as much as I always have.

Today we lounged around the house most of the day. We got the Christmas tree out, put it up and decorated it!

Its beginning to look a lot like Christmas!

I forgot to add on the previous post - I found out I was pregnant when JB was on a business trip.

Since he was gone I had the time to make a shirt to surprise JB with.

Happy Thanksgiving from...all 4 of Us!

Nope - not a typo - there is Justin, Jace, me and.......our little June Bug!

We will be adding to the Bryan family June 5th!

I found out I was pregnant a week after we were told Jace needed to proceed with the surgery route.

What crazy timing huh? God sure does have a sense of humor in His timing.

I do not know WHY the timing was like this but its all in His timing.

The only complaint I have are that my emotions have been crazy with this pregnancy then add the stress of major brain surgery for our baby boy. I have been a nut case! JB is my witness.

JB has been so great and understanding. That I am very thankful for! 

I started the belly pics just like I did with Jace but rather than weekly I will do every other week.

Those 2nd children just get the short end from the start huh?

We will be doing a fw things different this time.

We will be not finding out if its a boy or girl until the day our June Bug is born!

I am also going to go all natural - no drugs this time!

Week 6

Week 8

Week 10

Week 12

We are so thankful for Jace's successful surgery, that God healed him of his seizures, and he will go on to live a very fulfilling and happy life!

We are thankful for our family, friends, and every person that has come into our lives - they are all for a reason!

We love you all and hope you all have a Happy Thanksgiving!

Post Op Day 2 - Home Sweet Home

We were woken up this morning at 6:45 by Dr. Tandon's resident saying they wanted to look at Jace but would return later since he was still sleeping. Luckily Jace woke right before they left the room.

After checking out his incisions and seeing how well he was wake, moving and all they said we would probably get to go home this afternoon.

We said that is great but lets see how he is doing come that time.

We didn't really want to go home with Jace if he was in great pain or overly agitated. They agreed and after Justin and I discussed we knew he would do better at home. He was so tired of the hospital - WE were tired of the hospital and we were not the ones getting poked and prodded.

After a good nap the nurse came in and removed Jace's IV's.

Dr. Von Allmen came in and told us that if we needed anything or had even the slightest concern to call her cell phone number. Since it was a holiday weekend she wanted to be she could be reached. How many doctors give out their cell phone numbers? She is so great!

We packed up, waited for a cart for all our stuff, told all the nurses bye and we headed out! :)

The nurses said that Jace set the record for the quickest a child has been discharged after this surgery!

How cool is that? That's God's hand at work........All these prayers being said have been answered!

Oh and Jace HAS been taking his medications for us.....with a little fight but he takes them!

THANK YOU!!!!!

Jace was a little fussy on the way home but it was time for some ibuprofen and food.

We had to get his prescriptions. While we waited for those we went and got him a new couch since he puked all over his old one. We also picked up Cane's Chicken since they JUST opened right by our house last week! YUM!

We made it home and it was snack time! :)

This is his "cheese" face - of course later I found out he was also constipated so it makes sense why he had THIS face!! LOL

Shortly after snack we notice Jace takes his usual "hiding" spot to go poop.

YAY!!! He is actually trying to go without a suppository!

Poor guy had a hard time but I after changing his diaper I understood why! YIKES

I have never seen such hard poop in his diapers EVER!

He went twice and after that his whining was much better. Rightfully so!

Jace was wobbly when we got home and still is a bit but he is full throttle playing!

After a little bit of play it was nap time for ALL of us!

Jace went right to sleep in his bed and JB and I in ours! MUCH needed rest!

We woke Jace up at 6 to eat dinner and play some since going to bed at 4 is way to early! :)

We sat and watched Toy Story 3 while we waited for dinner to finish cooking.

We both got snuggle time from our angel!

He was not too happy that we woke him up and it was time for some Ibuprofen again.

After dinner he perked up a lot! We did bath - no washing his incisions yet though. Dressed for bed and its quiet time for a bit before bed.

JB went to get some food for tomorrow - the typical football game foods and a few other items we need in the house.

My mom got us a precooked turkey but it was still frozen so we will have to have Thanksgiving Dinner later once the turkey defrosts. Thank you Mom and Dad!! :)

Jace and I are watching some Mickey Mouse Clubhouse before heading to bed.

Jace is still a bit wobbly but I thinks its more from not walking for a week and all the heavy drugs.

Jace's incision looks GREAT!

Lets pray it stays that way and we get the all clear next Thursday at his follow up appointment!

Well its bed time for Jace and I need to unpack MY bag :(

Then its shower time in my own bathroom with my OWN soaps!

It may even be a night for a hot bath IF I can get Jace to bed easily.

Post Op Day 1

**WARNING: Jace's incision pictures are on this post**

Last night was terrible. Jace was what they called hyper agitated! This started around 1:45 am. 

They decided to change the morphine from every 4 hours to every 2 hours. 

After another dose of morphine and still didn't calm down. At 2:30 when he was still flailing and going crazy they went another route. Precedex was ordered. This was a sedative that helps to calm the agitation and let him sleep. Also, we needed him to stop pulling on anything he was grabbing before he pulled out an IV. He had already tried to pull off his bandage on his head. 

Finally at 2:45 he calmed down and rested until about 6:30. 

At 8 am we were transferred back to EMU! We were so glad. We are not a fan of the PICU at all! 

I know it was needed but there were too many wires required and too many alarms and monitors going off. 

Also, the nurses just weren't quite the compassionate ones we get in the EMU. 

Jace took his seizure meds today pretty well. We praise and praise him for this hoping he keeps it going :) 

Thank you for those prayers - they were answered! 

Actually the prayer for him to take his syringes was answered SO well that he will only drink apple juice from the syringe LOL I don't mind since he doesn't seem too interested in any of his sippy cups. 

Once we got settled in the EMU and ordered breakfast we all napped for a good 1 1/2 hours. MUCH needed! When we woke up we found that Jace took of his bandage. This was ok since they were going to remove it today anyway. He didn't take it all off, just the top bandage. 

Jace was pretty hungry once he woke up and ate well. This was the most he had eaten since Thursday! 

He scarfed down a pancake, bacon, grapes, and some Cheerios. 

Justin's sister, Misty, came to visit at lunch time. She brought JB and I lunch and Jace a couple of loveys. 

Thank you SO much Aunt Mitty! :) Jace enjoyed being loved on by you! 

It was nap time again for all of us when she left. 

I was so grateful for the 2 naps today - we all needed it after last night.

Dr. Tandon stopped by and said he thought Jace looked like he was doing great and we would have the drainage tube removed tonight or tomorrow. We were anxious to get it removed but then again dreading it since we were told he would need a staple. 

Dr. Von Allmen also stopped by later on and said she was so glad he was doing so well!

No weakness on his right side and no complications of any kind that we have seen. 

As the day got later we thought Jace's tube was going to be removed tomorrow. 

At 5:30 Dr. Tandon's resident stopped by to remove the drainage tube! YAY!! 

We got even better news - no staple!!! When they sutured up the drainage tube he left enough of the sutures to tie it up after removal. He snipped the tape that was holding the suture, pulled out the tube and tied the sutures up. It was all over in about 3 minutes!! The best part of all this was they used dissolvable sutures for everything! I was not looking forward to removing the stitches but we won't have to! Jace cried for a small moment when  the tube was pulled out. The nurse was telling us earlier that the adults and older kids tell her the tube being taken out is not painful - it just feels VERY weird. Like a snake under your skin. 

He kind of resembles Caillou now...... LOL 

No more drain makes us ALL happier! 

Justin's friend from work, Cesar, came by to visit around 7 pm tonight. 

He also was impressed on how well Jace looked after all he went through. 

Thank you for the company Cesar! 

Being silly with Dada! 

While Cesar was visiting one of our nurses that we like a lot took Jace out of the room for a bit to look around. They hung out for a good 20 minutes! :) 

Jace likes people a lot and ate that up! 

At 8:30 it was time for him to wind down.  He was rubbing his eyes and all. We gave him a sponge bath, got a fresh gown and diaper then it was night night time. 

I was rocking him and he was whispering, then would sigh and say "dada" LOL He loves his Dada! 

The rest of the incision on his head.....

Everyone is in bed and asleep....time for me to head that way! 

Jace is recovering remarkably! 

Those prayers are powerful! 

Love y'all!! 

Tuber Resection Surgery

Today is the day Jace will become Seizure FREE! 

Jace decided at midnight last night to sit up and talk for 2 hours. We had to keep telling him to lay down and it was night night time. He eventually laid down and slept. We woke up around 6:30 am. 

Poor baby was asking to eat but we could not give him anything. 

They finally came and got us at 9:30 to go down to the pre-op area. 

Jace was pretty calm today and in a good mood. 

We got to the pre-op area and he played with some toys until the OR was ready. 

I caught a small amount of him singing the ABC's with his toy

And we had to sing "If You're Happy and You Know It" :) 

The anesthesiologist and nurse came by. He liked the nurse and went to her with no problem. 

Since he was so calm they decided he didn't need the pre-medication that they give to make the little kids chilled out. They took him back around 10:30 am. 

We met Nathan at the Zoo entrance and he picked us up to go to lunch. We went to an incredible Mexican restaurant called Cyclones Anaya's. After that he dropped us back off at the hospital around noon and we went to get a check up on Jace. They had not started on Jace yet by 12:30 but should be within 10-15 minutes. JB was wondering why it was taking so long but they have a lot of pre-op stuff to do. Monitors to hook up, shave his head, clean up the operation area.....all that stuff that takes time. 

At 12:50 I got the call from the waiting room that they started the surgery at 12:45. 

We are lounging at the Ronald McDonald house washing clothes, relaxing and I am blogging. 

I will update again once I get more info :)

UPDATE #1 - 2:55 PM - I called for an update on Jace and they said everything is going great but they are still working! Keep the prayers coming in - God is answering them!

“Again, truly I tell you that if two of you on earth agree about anything they ask for, it will be done for them by my Father in heaven. For where two or three gather in my name, there am I with them.” Matthew 18:19-20


UPDATE #2 - 4:32 PM - Dr. Von Allmen came out of the surgery and said they removed all of the tubers in the area that was causing his seizures. After removing this area they put the EEG on him and all was quiet!!!! Praise the Lord!!! I am so excited, relieved, overcome with so many emotions! All I can do is cry!
The only complications we may see is temporary weakness on his right side. We will get physical therapy and speech therapy to evaluate him tonight or tomorrow.
They are closing him up right now and we should get to see him in about 1.5 hours. I bet it will be more like 2-3.
Tonight we go to PICU and they will get him all ready, stable and awake. We should move to the EMU tomorrow. His bandage will come off and the drain will be taken out.

UPDATE #3 - 5:20 PM - the nurse from the OR called and said they are closing him up now and will send him to CT Scan after that. It will still be about 30 mins before they go to the scan. He is doing great though! Can't wait to see our sweet baby boy's face!!!

UPDATE #4 - 6:00 PM - Dr. Tandon came out and said the surgery went well they are taking Jace down to the CT Scan the to recovery. We won't know how well he is from surgery until they wake him up. However, Dr. Tandon said he is confident it went well and the only effect we should notice is NO seizures!! :) I am so full of joy about this!
Dr. Tandon said the two tubers that he took out were "impressive" and sounded like they were bigger than he had expected. We asked for an approximate size and he showed the end of his thumb. That's for each tuber and honestly was not as big as I had thought. :)
Thank you for all the prayers! God is faithful and has answered. Keep those prayers coming for a great recovery!!

I meant to add earlier that they did have to give Jace a small amount of blood via transfusion. This was expected.
And the first surgery they gave us Jace's hair that they shaved off.....will share that picture later.

UPDATE # 5 - 11:15 PM -  Here is Jace's hair in a bag :)

Look how much it had grown back in a matter of 3-4 days!! They had razor shaved his head too! 

Earlier while we were waiting to hear Jace was out of surgery we went to Hermann Park. Fresh air is really important! We had to have that rather than sitting in a waiting room for 6 hours! 

While we were there we saw some squirrels and they were the friendliest ones EVER. 

It was a little creepy how close they came to us...I thought one was going to climb up my leg like I was a tree. He was THAT close! 

Almost about to let JB touch it! 

We stopped by the EMU room to eat dinner and we found this incredibly cute cookie bouquet from JB's project at work! 

Speedy recovery but I hope speedier than turtles ;) 

Unless those are super fast turtles! 

When we finally made it back to see Jace in recovery he was partially trying to wake up. 

He was pretty fussy and they started him on his pain meds and anti-nausea meds. This helped some but no fully. So they gave him some Narco orally as well. The nurses had to hold him down and force it but he got most down. After a bit he was crying and then in the middle of crying he would look up at the fish on the ceiling and ask "whasdat?" LOL the nurses got a trip out of that b/c it was just in the middle of almost screaming and he would stop on a dime to ask that! 

They got up set up in PICU room #6 and after a BUNCH of getting things adjusted I held him and that helped calm him down. They had to remover the arterial line and foley cath - both of which are good to have but wires that are VERY annoying! Less wires is much better and honestly the foley was annoying or uncomfortable to Jace. I don't blame him. 

JB got a room at the Ronald McDonald House so he would be closer tonight. JB went and got our essentials for the night from the EMU room while I just held and loved on Jace. 

 I went there to shower and then came back to get Jace ready for bed time.  

Jace was shivering pretty bad tonight - he was on Wednesday as well after the anesthesia. I am pretty certain the anesthesia makes him shiver when he comes off it. This was worrying JB but mainly because it was coupled with Jace making this squinting face when the lights were on. He is very worried they are seizures but I am staying positive and know its just because he is not yet fully awake from the anesthesia. 

We had to give him his seizure meds and he took them!!! We had to hold him down at first but after a few squirts he just sucked it right down as he usually did! YEAH!! keep those prayers coming! We need him to keep taking his meds for us!! :) 

Well its time to get to Jace to take some meds and drink a little bit of juice if he wants. 

Keep on praying for a good recovery!! The surgery was a success - God was listening to all the prayers that have been said for our little guy!!! Thank you!!!!! 

We love you all! 

Grid Placement - Day 4

Today was way better than yesterday! 

Jace's pain is being controlled with an IV medication and not morphine! I don't know why it took them so long to start giving him pain meds that can be given in his IV but I am SO grateful they did. 

What they are giving him is much easier on him and his digestive tract. Not constipating and non narcotic. The nurse said its very similar to ibuprofen - just a little stronger. 

The issue now is getting him to take his seizure medications. He flat out refuses and when I try to sneak it in while he is sleeping he spits it out. He has gotten smart on us. He will only drink water from his sippy cups because its the only thing he knows we won't mix his medicine with. Since he won't take his seizure medication they had to give him another medication via IV. Its like Dilantin but not quite. His doctor said this will at least hold him over for the day. I am PRAYING he will take his medications after the next surgery and for sure once we get home. We will not have the ability to hook up an IV when we get home. JB and I are very concerned about this. Add this to your prayers for us please. 

On the upside I have to admit that we did not actually see any seizures today so that IV must have worked. 

When we woke up this morning Jace was actually swollen. He actually started to get a black eye and the left eye is swelling. Its not bad and its completely normal for this to occur. 

This morning Jace was FREED! LOL They unhooked the wires to his grids from the EEG monitoring. He still has the drain but that does not weight much and he can have the drain in a small backpack so its not dangling.  This took off a LOT of weight from his head! It also freed him up to be able to go to the playroom. He was excited to get out of the room! :) 

We went to the playroom and let him walk but after being in bed and on narcotics for 3-4 days he was wobbly. It was more stressful watching him, shadowing him, and making sure he wasn't running than it was to keep him entertained in bed for 3 days! He fell once and thankfully it was not hard or on his head. After about 30 mins we came back to the room. We didn't go back to the playroom because we were too concerned that he would fall and when we were following him he was getting MAD!

 We figured we would just avoid that fight and tantrum :) 

After playing in the playroom it was nap time! This picture reminds me of when he was a baby because his face is pretty swollen so it looks baby like. 

We signed the consent for Phase III, the tuber resection, which will occur tomorrow at 9 AM. We asked Dr. Tandon for the picture of Jace's grids that he showed us yesterday. He said he would BUT he is notorious for not getting them printed for the patients - he admitted that :) We asked if he knew approximately how big of an area he was going to remove. He said it was hard to say for sure but one spot is about the size of a pocket watch and the other is about half the size of a pocket watch. 

We are much more at ease about this surgery but again its always nerve wracking to have your baby put under anesthesia - whether its for brain surgery or a simple ear tube insertion. We trust that God will take great care of our baby boy and will guide Dr. Tandon's hands. 

I am excited to see how Jace will be after that area is removed. His brain has not had a break from those constant sub-clinical seizures in 2 years that we know of. I am anxious to see how much he picks up and develops once he has the ability to full focus! The seizure meds will continue for at least a year so that will cause some fog but it won't be combined with constant seizure activity. 

My mom came and visited again this afternoon. She played with Jace while JB and I went to get dinner. 

We appreciate this so much! Thank you again Mom! 

Its always nice to get out and get some fresh air together. We walked down to Texas Children's to eat at McDonald's - again thank you Kristen and Nathan for the gift cards! 

When we got back Jace was pretty played out! :) 

He was ready to crash out pretty quickly but we needed to give him a special "bath" to kill any germs on him before his surgery. He got one bath tonight and will again in the morning. We had to change out all of his bedding including his SUPER soft minky blanket that Lisa made him. Luckily we had just washed another blanket that our friends Misty and Derek gave us so we are using that tonight. Its soft and is MUCH better than those scratchy hospital "blankets" (thick sheets LOL). 

His minky blanket really does need to be washed. That will probably be something we will do to pass time tomorrow while he is in surgery. I am SO thankful for the Ronald McDonald House here. We can wash our clothes, get snacks, rest, and get out of a hospital setting there. It really is invaluable for any parent that is in the hospital with their child for an extended amount of time. 

Its time for me to get to sleep.....they will be in here at midnight and 4 am for his meds.

Hoping he doesn't wake much between those times. 

Please pray for a safe, successful and speedy surgery tomorrow! I KNOW God has Jace in his hands. He has done so well because of all the prayers. We are so grateful for all the people praying for "Baby Jace"! 

Thank you and we love you all!