Kathy's Update cause hers are so much better than mine!

Happy New Year!

We hope everyone had a wonderful Holiday season, a fun and safe New Year's!

Skyler is doing well these days. Everyday he is getting stronger and more back to his normal self. A couple of days he has been able to stay in his chair for up to 5 hours at a time. He lies down for about an hour and right back in his chair and back to controlling things! He woke up the other morning at 5am (Oh Joy!) laughing and giggling about a New Idea he had!! As soon as he was in his chair, he was telling us the script/scene for his next videotaping extravaganza! Since that fateful morning, he has made 2 new DVDs of coordinating things on one of his video tapes (usually news shows or home movies) with one of his computer games. They are called "Same Time" and "Same Time 2". He thinks they are GREAT!! (We video tape the scenes he wants, then he and Chris burn it onto a DVD. Quite the project!)

Skyler's appetite is a little better. There were a couple of rough weeks with the eating. He just didn't want to eat. He said it hurt his throat, would take 2 bites of things and then just stop. I think he has lost about 10 of the 15 pounds he had to gain for the surgery. The last couple of days have been a little better. He is eating more and asking for stuff to eat. Some days he is almost back to normal, some days he is only about 60-70% there. He is still coughing quite a bit. I took him to the ENT about his cough before Christmas, and he ordered a swallow study to see what is going on with Skyler's throat. We are waiting to get that scheduled. Skyler has a lot of gunk in his throat. It's hard for him to swallow it, cough it out and it is too deep to be suctioned. (Sorry if that was too graphic or too much information) We are going to have Skyler work with a speech therapist who specializes in feeding issues and get some ideas on what to try. We were hoping the surgery would help with his coughing, but it hasn't so far. He still has a cervical curve and the rest of his body
is straight. Maybe with time things will figure out the new alignment and start
working better. So far no one in the medical profession has any answers for us.
One thing the surgery did fix, was his constipation problem!! I guess things like to be straight and not all squished together. He likes to tell us,"You are out of poop!"
Cute! :-) I guess his use of "I" in the other sentence was drug induced!

Skyler is still having trouble sleeping. He needs to be turned about every 2-3 hours. It is getting a little better. A couple of nights he made it about 4 1/2 hours without needing to be turned!! A couple of nights, I thought he slept well, but Chris told me that I Was The One That Slept Well!!! So much for "Mother's Ears"! :-) Sleep... A full night of Sleep... What is THAT anyway??? And is it really necessary????

We have Mastered The Shower!! The first few showers, Chris, myself and the bathroom floor got more water and soap on us then Skyler did! But we figured it out. He stays in his sling and we roll the whole lift into the shower and it works quite well. However, it is a little cumbersome getting the whole rig into the shower, we now realize we need to remodel his bathroom making it a lot bigger. Time to look into all of that...

Skyler will go back to school on January 9th. He will go 1/2 days for the first week
or so and see how he does after that. I think he will be just about ready to go back. It will be good for all of us to get back to a regular schedule. The first day we'll show the aides how to use the lift to transfer him and how to move him.
So, there you have it.
In a nutshell, Skyler is making very good progress. The visiting nurse was
amazed at how little pain medication Skyler has needed lately. She also commented on how Strong-Willed he is (she was here when Skyler and I were having a "Let's Make A Deal" session on what he could and could not do) she certainly got that right!!! And to be honest with you, I wouldn't want him any other way! Whatever you do, Don't tell Skyler!
Just remind me I said that next time he and I are butting heads!! :-)
Have a great day and the Very Best in the New Year!!

Sorry I haven't posted in awhile

Things have been kind of staying the same around here. Skyler continues to spend just a little time in his chair and more time laying down. It will take a long time until he is back to handling a full day sitting up!

It occurred to me that I have pictures of about everything except Skylers temporary hospital bed, which we have squeezed into his room. The reason we need this is because we need to be able to raise him up and down to attach him to the sling and lift. Also, the Hoyer lift can't go under his regular bed because it is a wooden frame with drawers on the bottom, with no room for the legs of the lift to roll under.

So it is tight in his room!

The laugh is back!

I really haven't had much to report these last days with Skyler. We have a routine going now that seems to work, spending as much time as he can tolerate in his wheelchair, then moving to his bed in the living room. So it is back and forth, and get out for an errand every now and then so he can get some fresh air.

He is enjoying himself more, and laughing at his DVDs that he has put together. His latest thing is to watch something on TV at the same time that he has a computer game running. We wheeled his old ancient Mac into the living room for him because it runs a very old bowling game he loves. The sound effects are funny, the bowlers all have lines like "Oooo, tough split", "Those gutters getting too wide for you?", and "Shake it off, shake it off." Silly stuff but he really enjoys it! So it's good to see that laugh back, now if would just sleep... Zzzzzzzz...

Rollin rollin rollin...

Everything we do with Skyler now involves rolling him from side to side. No more picking him up under the arms, or just lifting his pelvis to change him or put on clothes. I'll tell you, this is going to get old fast! He is being a pretty good guy about it all but he is still that same old impatient dude that wants what he wants and now.

We picked up a cot and a different mattress to have him lay on in the living room that the lift can fit under. So we don't have to pick him up the wrong way or risk a drop to get him from his chair onto the floor.

This week was very, very long... I hope he gets to feeling better soon. Mama and Pop need a nights sleep.

That's not a scar...

In my best Crocodile Dundee voice:

Now that's a scar!

Skyler got the outside dressing off from the surgery site today. Now they just let the butterfly strips fall off as they will. The cut actually goes about 3-4 inches farther down.

Home life

Skyler is doing pretty well, having a bit of pain and spasms but we can control that with pain meds and Valium. This biggest issue we have is with moving him and making sure he is comfortable. He can handle about an hour in his wheelchair and hen wants to get out and be on the floor to stretch out. So this means a lot of coordination and lifts, which means we both need to be here most of the time to handle him!

So we are lucky that I can work from home, and I have a lot of really good people and an understanding boss I work with.

Here is Skyler getting transfered in the Hoyer lift:

Here is is chilling on the floor watching a DVD:

His G-Tube continues to leak so we are heading back to the doc today to have them look at that. It probably needs to be replaced, but that isn't much of a deal.

Sunday Afternoon

Update from Kathy:

So, I'm wondering... is it midnight yet?!?!?
It has been a long day of figuring things out for us. Skyler had a pretty good night last night. He was awake early wondering where his 20" flat screen TV with CNN Headline News was???

Skyler got up wanting to do all of his usual Sunday activities and was very frustrated because he just didn't feel well enough to do them and the control on his arm was still weak. He is a little disappointed with Chris and I and how long it takes us to transfer him and get him set up. Mr. Patience! NOT!!! We are getting better at it. I think we will rent a reclining wheelchair so Skyler can lay back and relax without going to his room. He wanted us to roll the hospital bed out to the family room every day for him... Uh, No. He has been in his chair a lot today, and, Drum Roll Please...
He is using his left hand to run the DVD/VCR with his DynaVox!! Ahh... Big Sigh of Relief. We had to raise his talker up because he is taller now and he isn't able to bend his head down as much as he used to. He is a determined little, Big guy.

We were able to get an order of Valium for his leg spasms. A few calls to the Silly (Damn) Resident finally worked. Skyler is having a little trouble with his g-tube and we are waiting to hear from the g-tube nurse about that. We may have to make a trip to Children's to get if fixed. We asked for her to come see Skyler while he was there, but she never made it. What's up with that?!?!?

We were hoping for a nap today, but so far no such luck. Skyler hasn't even dozed off, even on his pain meds. He spent most of his day in the hospital sleeping.

That is the news from The Hull Household. Thanks to everyone for your support.
Don't worry, I won't send out a daily update, only if something really exciting happens! :-)


We are home!

Skyler came home late Saturday evening! He cleared all of the requirements for coming home, so out the door we went! Skyler was ready to be home. He had been very moany, groany all day until the nurse said that he was free to go. Kathy and I were cleared on the 2 person lift and the rest of his care.

It was little bit of a fire drill getting out of there, it always seems to be that way when we check out of the hospital. They called in pills for his pain meds instead of liquid to King Soopers pharmacy. Stupid Resident... The pharmacist was great at KS. I called the hospital for a new prescription and she stayed 10 minutes late so we could pick it up.

Skyler is tucked into bed. He was very, very tired. He came home and tried to do all the things he usually does but was too tired to do it. He is using his left arm better, but his fingers are still weak. He is frustrated with it but we will keep working on it and hopefully it will get better in the next few days.

The week has been a whirlwind. Monday seems like a year ago, I barely remember it. Sometimes I feel like they rushed us out but I guess they went with Skyler's progress. The new hospital is beautiful, family friendly, and very comfortable. The nurses and doctors were wonderful. They all did an outstanding job with Skyler, and preparing us for the return home.

Skyler did a remarkable job through the surgery and his immediate recovery. He has a long recovery, with many frustrating times ahead of him, but I know he will do well. He is very brave and strong, with a lot of stubbornness in him also!

Thanks to everyone for your support, positive thoughts, energy and prayers. Please keep Skyler in your thoughts and prayers.

We'll keep you posted on the upcoming adventures at home!

Before we left the hospital, Kathy went outside to try and see where our room was. She called and told me to wave out the window, but to do that I had to crawl up into it.

Saturday through midday

Skyler is more than ready to go home!! He has been a little crabby this morning... even with Holiday Singers outside his room! Don't even try to make me happy!!!

We washed his hair with shampoo in his bed with a couple of towels and a plastic trash bag. It worked well.

He is in his chair and he used his left hand a little to run his DVD!! YEA! Made my day!! He is still very weak and not as motivated as usual. But it is a step in the right direction. He moved his legs today also. That is the first time he has moved them since the surgery. He is making progress today because he is really DONE with being in the hospital!!

He is off of oxygen right now. He needs it when he has had his pain meds and at night. We will work on that today and hopefully go home without oxygen. The Pulse-Ox below rules our life right now. 92 on the left is his O2 level (90-100 is where he needs to be) . 118 on the right is his pulse rate.

We have been cleared to go home by the ortho department. I think if we learn the 2 person lift, bathing and dressing instructions we will go home tomorrow. Skyler is pretty miserable and upset I think he will be better at home. Let's hope!

We went down stairs to cruise around and see the decorations. Skyler saw the front door and was ready to make a run for it!!! :-)

I hope everyone is having a great Saturday.
Kathy and Chris

Ketones and Autism Part 4 � Inflammation, Activated Microglia, CtBP, the NLRP3 Inflammasome and IL-1�

This series of posts on ketones and the ketogenic diet (KD) is nearly finished and I am glad that I made favourable comments about the KD ea...