Adjusting

Oh no, it's all becoming normal again! Well, normal in the sense of what is normal for the next 5 weeks.

The pain is pretty much gone. I still give the nerve meds in the evening to insure a good night's sleep. It seems, these days our biggest problem is combating the boredom. He seems resiliant to the nonstop, chalkboard screeching sounds of an afternoon on the Disney Channel. I am thinking we are finally at a point where we can start to watch less TV. He received a lovely gift today from his Aunt Marty. She sent an artist's sketch pad. He was delighted with the picture inside the front cover.

I went back to work this week. Tuesday was my first day in. Dad came to stay with him on that day. When i came home, I expected dinner to be waiting, but i was mistaken. Skyler said he slept the whole time. I cleaned the kitchen and finished the last of the chicken wings in the fridge; i think he had a hot dog. Joni stayed Sunday night into Monday. His Nana stayed with him today. The weather kept me home, but she will be back later in the week to spend more time with Sky. Dad is set to come tomorrow for the day so I may return to work.

Sky's flexibility and upper body strength have improved exponentially over the past few days. today he bent straight over and picked up his ball without a whimper. He spends a fair amount of the day crawling from the bed to the floor to the couch on his own. He often needs help at the final moment to get into a comfortable position. I do wish he would eat more.

Here are some pics of the day. He was lying on my chest on the couch and i tickled him. I find it easier to do so without recourse when his legs are tied down. i can be at his feet and poke his ribs and dare him to kick me. i try not to tease him too often, as i am trying to breed a calmer, gentler child. He has become quite demanding and his language can be foul. This afternoon, he was forced to watch CNN instead of the Suite Life.

The silence in the evenings is nice

Day 4 & 5

It's been an interesting weekend. Skyler's mom and Nana stayed over the weekend, mom and dad took the weekend off. It was more of the same yesterday, trying to find the right spot to sit. He is becoming use to all the attention he is getting, and I begin to wonder if some of it is in his mind. We went all day without the nerve medicine, and we're down to just ibuprofen for the pain. And the constipation has been defeated! Sadly, i wasn't there when he made the deposit, but he called me just after to tell me how it went. I was so proud. I called mom to let her know.

Sunday seemed to start like like every other morning. He did manage to sleep all night Saturday, which was a blessing for everyone. We only give the nerve medicine before bed and a half dose when he wakes up. So, this morning he decided he wanted to get up and walk. It was a failed experiment, as he was upset and in pain when he made the attempt. He became very depressed when he couldn't do it. i reminded him of when he was in Dallas and the youngest kid on his soccer team and how he ran circles around the other kids. i reminded him how much stronger he would be in the coming months after he is fully healed. This provided some relief, then we played the gameboy for a few minutes to distract him.

Within moments he was ready to try again, this time with a better attitude. we managed to make our way from the carpet to the hard floor, then he fell flat on his face. this is where i got some great pictures. surprisingly, he was not hurt, but laughing and licking the floor...

So, now we have a new problem, the child who we couldn't satisfy lying down is now feeling better and doesn't want to sit still. He goes from trying to walk, to just standing with the aid of his crutches, to falling on his face on purpose. i almost with he were still bed ridden, cocky little punk...

of course i'm happy that he's feeling better, but he has become very bossy. I use to threaten him with putting him in his room and closing the door, but that won't stop him now. The pictures should tell a pretty good story of what i mean.

His mom is leaving tonight, but Joni, his longtime friend and babysitter, is staying today and tomorrow. Mom is going to Mexico tomorrow, so i'm thinking Dad will stay with Joni tomorrow while i go back to work. His Nana will be back on Tuesday to stay with him again. The worst of it is finally over.

I expect him to have a much stronger upper body, he's dragging himself all over the house as we speak.

more to come...


ps

i've watched more Disney Channel than is healthy. i need to hang out with adults...

Day 3 - Valium to the Rescue

What a difference a day makes.

The key to the success of the day is medication. we managed to keep him happy all day by giving him the meds before he started in pain. I have been reluctant to give him too much, or more than prescribed, but i think we've found a healthy balance.

Brooke came by today, followed by Maria and Lydia. It's nice to have beautiful people around, puts everyone in a better mood. Skyler has a thing for blonds. He is very brave when visitors come to see him. Mom has taken to calling him "The Brave One." He spends so much time thinking about the pain, it's nice to occupy his mind on other people and better conversations.

Not much else to report on this day. I managed to grab a nap around 3 in the afternoon, so i was something of zombie the majority of the day. Mom & Dad were gracious enough to give me the night off. I retired to my bed around 8:30. Evidently, he was great through the night. I never heard a peep, and I hear everything.

Gato is after Skyler's toes. He's using a back scratcher to keep the beast at bay. Some pictures are below. Gato just attacked the camera, trying to destroy the evidence...









until tomorrow

Day 2

This was hopefully the worst of it. I can not think of a more painful event in either of our lives...

The day went ok. Mostly, he was trying to cope with what was going on. It seemed less the pain of the hip, more the anxiety of being trapped in the cast. We learned that moving him occasionally helped with the pain.

I'm so exhausted i can't write more. we were in and out of pretty intense episodes of pain and anxiety every hour or so through the night. Mom came out at midnight during the first episode. I didn't know what else to do.

The doctor prescribed some anti-anxiety meds and muscle relaxer to help with the spasms he's experiencing when he first falls to sleeps, and to help keep his anxiety at bay. We both passed out finally around 5 this morning. I'm pretty sure we got about 3 hours at that point.

Gato seems impervious to the screaming. Mom and I are trying to keep Sky calm and she's purring away between his legs.

Here are some pics from the day. I like that he uses his bars as a laptop holder. the next was taken this am while we were passed out. I found that when he woke, just putting hands on his face and chest helped him to drift back to sleep.

Sky keeps his Cowbell Tours calendar by his bed, marking off the days until the next appointment. He's so good with numbers. He said "12 more days until my appointment." It's amazing his resolve after the night we just experienced.

there's a pic of his new boxers that grandma assembled. She cut the sides and installed buttons on the so we can maintain some decency in all this. I'm hoping she can do that to some of mine. Sometimes i can't get them off fast enough...

Intro to Perthes

For those of you who don't know, the following is an explanation of Perthes disease and how it is effecting Skyler.

Around April or May of last year, Skyler was diagnosed with Perthes Disease. Perthes is a disease that affects children, primarily boys, under the age of 8. In Skyler's case, his right hip was affected. Here's what it does: Blood flow to the top of the femur, or femoral head stops, so the bone becomes soft and brittle. As the blood begins to flow to the femoral head again and the bone regrows, the soft tissue can become flat due to constant impact from normal day to day movement of the hip. In Sky's case, he fell down some stairs leaving school and actually cracked the top of the femoral head. Obviously, this was very painful.

For weeks, I dismissed it as a bruised hip from the fall. As we were at the doctor for another ailment, we had them perform an x-ray and, and 3 doctors later confirmed it is Perthes. The doctor in Dallas determined that he has likely had the condition since January or February of 08, and it is generally a 3 year process that will work itself out. Unfortunatley, because Sky fell and further damaged the tissue, his body was restricting movement, further damaging the femoral head, so he would have to do something to rememdy the situation.

Upon arriving in Knoxville, we went to see a doctor from KOC who basically told us the worst news we could ever want to hear. He said it was the worst case he had ever seen, wasn't completely sold on Perthes at first, tested for everything from RA to Perthers to infection and so on. We tried therapy for a few months, but it wasn't doing the trick, so here we are.

It's late and I'm not super excited about giving all the gritty details, so feel free to look up all you can on the disease.

Day 1

hmmmm...

It's 9:30 in the evening, and what a day it's been. We woke late to a thin blanket of snow on the roads. It's been nearly three years since the boy has experienced a snowy winter. We arrived promptly at 10:25 and were rushed through to our room. Evidently, the hospital was busy, as another family was already occupying one side of our room. We had enough time to get settled before we were approached by nurses and anesthesiologists.

She brought Skyler the "happy juice." Imagine a 7 year old as a mean drunk. It's difficult to get angry when you know he doesn't know what he's saying; trying not to laugh but trying to be serious at the same time. His temper is short; he's having difficulty controlling the volume of his voice, and he seems to have lost all fear of me. I had to leave the room for a minute...

The VIPs are being seated for the Inauguration.

We are ushered up to the Operating Room. The ladies all agree he is very cute, while the doctors ask me a series of questions about the security of his teeth. Skyler is drooling on himself at this point, but manages to wiggle the single tooth that is loose this week for the Doc. At this point, the ladies are fussing over Sky's necklace. He's wearing a necklace of special healing crystals bound by copper, all specially selected with Sky's condition in mind.

Obama makes his speech. There are two obnoxious girls in the waiting room who won't stop talking. One of Sky's nurses comes in to advise that they do not offer blue casts. She stays for the rest of the speech.

The doctor arrives and he seems in a great mood. Apparently, everything went very well. He was able to stretch his legs and place the hip just where he wanted. I'm told Sky will be in Recovery for another 30 minutes, then he'll be sent down to the room. I go down to the room where Amber is waiting. I tell her the news and rush to the car to get my camera. I am not gone 10 minutes when she calls; Skyler is in Recovery and he's asking for me. I run back up to find my boy quite distraught. He was in significant pain at this point. His legs are stretched farther than they have been in over a year. As it turns out, his IV somehow had been jammed deep into his hand, so he was in relative agony until we made it down to our room.

Back to the room, Skyler is in pain, mostly from the IV and his general state of confusion, Amber's nearly in tears and I'm telling bad jokes to lighten the mood. Sky doesn't appreciate my humor, but our nurse Barbee was a fan. After some fluids and a Popsicle, the IV is removed and I hear a sigh of relief come from the boy. This is our first bout of silence in the afternoon. These were few and far between for the next few hours. This went on and on over the next 4 hours. We waited for the drugs to wear off, then for the new drugs to kick in.

The physical therapist shows up with two boots and a pair of crutches. Skyler now weighs about 30 to 40lbs more with the cast. So I'm lifting the child, who is bare assed, up in the air and trying to have him walk with crutches. I'll give you a moment to look at the pictures, then piece together how this might be possible... The entire time we're trying to help him make steps, he's reaching around to cover his bottom, which is sticking straight up and out of the back of his gown as we attempted to enter the hallway. I gave the therapist a look that said, "are you kidding me, get this child a wheel chair, and bring me a vallum." As i get him back into bed and promise to work with him at home, she rushes off to obtain a wheel chair.

And on it went, 2 hour wait for the chair to arrive, Ted Kennedy has a seizure, the bed nurse sings "Amazing Grace."

The car ride home was brief and uncomfortable. Amber had to ride in the back with Sky, as his foot was in the door by only centimeters. But what a relief i felt when we pulled into the drive. Sky was relieved to come inside and find his hospital bed, decked out with his sheets, pillows and assortment of stuffed pals, 3 of which are called Doggie. Grandma and Grandpa has prepared the room for his arrival. Balloons await, tied to bars of chocolate. He slips right into his role, demanding his Gameboy, then a drink, then his pee bottle. it was an hour in when the pain meds wore off. After they were administered, he was more comfortable again.

I believe the first day must be the hardest. As hims muscles lengthen, the discomfort will subside and we can put away the medication. We made a great attempt at reducing our TV intake prior to this happening, and I hope that this will continue into the coming weeks. Selective TV watching is the key.

It's 10:15 and he's off to sleep. It took several adjustments of his bed to find the right spot. I will soon follow suit. Gato has found her place between his legs...

until tomorrow