Parker is doing so well. It has blown me away. My husband gave him a priesthood blessing the day before the surgery and blessed him that he would not regress at all. I so wanted to believe it possible and it has been so true! It has blown me away. Not only has he not regressed, but he is actually doing better in some areas. Kelsi said that some of his memory must have

been attached to his bone.

He came home one day after surgery! He was off all pain meds shortly after that. He is so alert. It took a full week after his g tube surgery for him to be remotely interested in getting out of bed, let alone work on anything. He is interested in things around him- watching his siblings and those around him. He is eating so well and feeding himself with his left hand. He is saying new words. Grandma pointed to a kitty and said "say kitty" and he said "ditty." He has said it several times, each with an adorable pleased expression on his face. He is smiling, laughing, sitting really well, playing with toys, snuggling, and walking in the gate trainer. I could not have hoped for a better recovery.

Don't worry. We still take it easy. We snuggle lots, rest lots and throw up plenty... 

But all in all I've been truly amazed.

Thanks to all those who have prayed for him. This week we have witnessed miracles.

Video of Parker this morning when he woke up.

Good morning!!! Someone is feeling a lot better this morning. I woke up to smiles and 2 little eyes peaking up at me.

Guess who gets to go home today!!!

If you think I look bad, you should see the other guy!

 One day post op

Parker's surgery was this morning to put the bone flap back in. For 6 months we have known this surgery was lurking and it is so nice to be done! This is the last big known hurdle is his recovery!

The surgery went great, but recovery is always hard. Things are going better now, though. This surgery recovery thing is rough, but we are all very grateful for morphine.  

He has a more color now -he was so pale. Even his lips has barely any color at all. He is also occasionally awake now without crying as long as I don't move a muscle.  I am really grateful Darrell is able to be here today. He held him for several hours while I took a much needed nap since Parker and I were up at 4:20. We have been taking turns all day. I sure married a wonderful man. The bright side of that early hour is that we were the first surgery of the day .

We just gave him some apple juice and we will see how he tolerates it. Then we can give him the better medicine that lasts longer. And hopefully he will decide to sleep at least some of the night without being held...

I am really grateful we were able to come straight the surgical floor instead of the PICU. We are right across the hall from our old room and we got to say hi to several nurse and therapist friends.

I am so happy to be on this end of the surgery.

I was playing peek a boo with Parker a couple weeks ago and he started saying boo boo boo!!!  It is mostly at the end of the video- feel free to skip to the end.  (And if I already posted this, sorry!) This is huge since we had several doctors say he may never speak again since the language part of his brain was affected.  It is interesting, though, because one week he will work on one sound (like ma ma) and get it down pat... never to be said again after that week. So this particular week was all sounds "Buh"- like Boo, Bubul (Bubble) and Bah for ball. It is a little discouraging that he forgets what he has already learned, but I prefer to think of it as moving on to bigger and better things.

We went swimming this week and Parker LOVED the water.  It helps that it was a beautiful day and the pool is heated, but I really loved how much he loved the water.

I promised my family I would post a video of Parker walking in his gate trainer. The fact that he is moving both of his feet is huge because it shows that his corpus callosum is either intact, repaired or not injured which is AWESOME!!! It shows that the right and left hemispheres of his brain are communicating.

I really need to do a full update, but I at least want to jot down a couple things before I forget.

• Parker just discovered his toes. :)  He reaches down and plays with them and tonight he even reached for his right toes. I checked on him in his carseat the other day and he was happily sucking on his toes.  And I happily let him. :)
• Tonight he was slap happy. Literally.  Darrell would slap the ground and he would laugh and laugh.  Then I would slap and he would laugh and laugh.  He also was turning towards us- which shows he can hear on both sides and recognize where the sound is coming from.
• We just got a gate trainer to borrow for home so we are really excited for him to be able to start working on walking at home more.
• He is really ticklish, especially late at night. :)
• (a few days later...) Yesterday I was randomly attempting to juggle. It is quite fun to learn when you have such an appreciative audience.  Every 3 seconds I'd drop a ball and Parker would laugh and laugh.
• Today in PT we were working on walking in the gate trainer.  I went to one end of the room and would say "Come get me."  I play the role of cheerleader a lot in therapy.  Today I grabbed a bright yellow volleyball and used THAT as the incentive to walk.  Perfect.  He loved the sound of my throwing and catching it, and especially if I dropped it.  It made this great pinging thunk noise when I bounced it on the floor and did a great job of keeping his attention.  Then I would let him hold it (and eat it) before I'd go back to the other side and do it all again.  Good times.
• We discovered that his bath tub is just the right size for him to sit in with toys.  There is a non skid part on one side, and his feet just barely touch the other side. Then he can fall to each side just enough that he can right himself with out help.  I need to take a picture.  It is great for his sitting practice.  
• His trunk control has improved so much.  I think today was the first day I successfully went to two grocery stores with him sitting in the cart with out any trouble.  Granted he was buckled in super tight... but still!!!

Heavenly Father answers prayers. I know that. Tonight I am so grateful for the prompting to keep calling my phone after I got home from the church. My friend heard something buzzing in her camera bag. Why I put it in there? Who knows. But it was almost dead and may have been months before being found. Maybe I just needed the reminder tonight that God answers our prayers.

Parker is having surgery in one week to put the skull bone back in. (Mon Feb 23rd) Please pray that all goes smoothly--that there will not be any complications, that the neurosurgeon will have steady hands, that he will have a good recovery, that the kids will not have PTSD with us being back in the hospital for several days, that his body will accept the bone, that he will not regress too much... just that all will go well. Please.

Poor little guy is still throwing up.  :(

I guess on bright side, he can now sit up in the little bathtub we have for him and he seems to really enjoy his nice warm baths. :)

We had a great ophthalmology apt. yesterday. You don't mind the three hour apt when they warn you before hand and the doctor and staff are so great. This doctor came very highly recommended and I can totally see why.  How many times does a doctor walk in on a super busy day and say genuinely "First of all, I'm really sorry you are going through all this." Then takes all the time you need (which is why he notoriously is running late, but that is just fine.)

He said Parker's eyes look great. So far his optic nerves appear undamaged and as of now it looks like he will not need glasses to hide his beautiful blue eyes. His left eye that is drifting is doing better and better each month. We are going to patch his good eye one hour each day to remind the brain to use the left, and then work with a vision therapist through his home infant educator. His vision is improving steadily as we just retrain his brain to work again. The therapist goes way back with this doctor and called last week to offer to come with me to my apt. How kind is that?

All in all, I am so happy with the prognosis and feel that he is in really good hands. There is a very good reason to always go with doctor recommendations!!!

The surgery date is now set! Feb 23rd check in at 5:30 am.

I am nervous... but more relieved. All along we have had milestones to work towards. Get ICP levels down for the MRI, extubation, extubation again... and again. Transfer to Radys. Move out of the PICU. Start rehab. Get out feeding tube. Eating enough. G tube surgery. Go home. Christmas. Family going home...

And all the while this looming surgery to put the skull back in.

It is now here. I really hope and pray the surgery goes smoothly and he has a good recovery without too much regression. He has come so far and he is doing so well right now!!! Please pray the surgery will go well. Please. And that he does not regress too much.

We worked on walking tonight and Parker did great!  He is moving both his right and left legs on his own!!!  

He has a lot of "tone" where his muscles tighten up and his leg straightens.  Some days it is better, some it is worse.  We give him medicine for it and try to get the dosage right so it minimizes the bad tone, but so he still has good muscle strength in his core and other areas.

We are working on getting a "Gate Trainer," a specialized walker for home.  He uses one in PT.  I am so sad I can't take videos or pictures at his therapy.