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!