LONG overdue update

I've finally decided to sit down and take the time to post an update that is long overdue! Life has been so completely busy. I've got all of the presents wrapped, made more candy that I ever want to think about again, and nearly completed all of the preparations for Becca's wedding. I went grocery shopping this morning to stock up so I don't have to venture out again until after the holidays and Billy's surgery.

My Billy update: His femur has completely healed so the day after Christmas they are removing the upper part of his fixator and the foot ring. We are completely done with turns and expect the rest of the fixator to come off sometime in February. His appetite is completely back and he's eating me out of house and home. He's gained almost two pounds back so far and he's very excited about getting most of the fixator off. He's going to be able to bend his knee again! One set of Grandparents is getting the kids a trampoline for Christmas so he will be very excited to actually be able to use it! His surgery will be at 10:30 a.m. the 26th and he's probably going to be off of his feet for at least a few days afterward. Rehabbing will begin as soon as Dr. Aronson says that it is okay. His knee is stuck in about a 20 degree contracture so it's not going to be a pleasant journey trying to get it straightened back out. I am still so proud of my son. He is now educating people about his fixator and about his Fibular Hemimelia. He explains it as he is missing a bone in his leg and the fixator is making the short bone longer. I will post new photos as soon as Thomas brings my camera back home. I need to get it cleared off and ready for the big holiday anyway!

My Ally upate: She's very glad for school to be out for the holidays....she's devastated that they neighbors went to Florida for Christmas break and she's driving me insane wanting to go to every single one of her friend's houses to play instead of staying home and relaxing. Her grades fell a little bit in Math but oh well.......she's only in the second grade. She's waiting on Christmas and her cousins to get here!

I hope the holidays are finding everyone happy, healthy, and well. May you find Joy in this Holiday season.

My Skinny Little Son.......and the latest Update from the Doctor!

The biggest challenge we have faced so far with this surgery has been to help Billy maintain a healthy weight. He still isn't eating well, even though he is off the pain meds and is occasionally taking medication to increase his appetite. His pediatrician is at his wits end trying to come up with additional ways to help him gain. He's getting the med and Carnation Instant Breakfast Milk and a calorie additive called Polycose that we add to his food and drink. When he was weighed on Tuesday, he had lost another 1/2 lb. He's to the point now that 2T Pullups are falling off of him and my mother had to take in all of his pants so they would quit falling off. I know of a few toddlers who weigh as much as my 5 year old son (We're approximating his weight to be around 29 or 30 lbs now. He isn't even on the growth chart for his weight anymore...he's fallen completely off. My biggest fear is that with cold and flu season hitting that he's going to get sick and his body not be able to fight the illnesses and end him right back up in the hospital. His ped required that we get flu shots this year (much to Ally and Billy's dismay). I'm getting to the point that I am ready for this procedure to be over so I can have my healthy, active little boy back.

On a much brighter note, Billy's appointment at clinic went very well this week. The bone is filling in very nicely on his femur and we are only 1.6 cms away from being done with turns on his tibia. So far the total length we have gained is 6.4 cms. The doc is now so comfortable with things that we don't have to go back for an appointment until Dec 7th.

You can definitely tell a difference in his leg now. He's having to walk with it out pointed at an angle because his left leg is now longer than his right and it's very hard to compensate for that length. He started scaling the stairs off of our screened in porch this week and was out riding on a skateboard last weekend. He's using the bathroom alot more independantly and has even started assisting with his pin site cleanings in the shower now!

We've been very busy getting ready for the holidays. I've started my Christmas shopping and I will decorate next weekend and start my holiday baking in a few weeks. I'm still working part time at Billy's school, mostly in the office, to keep them up to date on the filing, and I have recently started a new home business crafting custom made hair bow holders. I hope to be adding tutus and pillowcase dresses to my product line soon.

Ally's been sick most of the week but other than that she is her usual divalicious self. She's really enjoying dance this year, and I've noticed a dramatic difference in her technique since she's in a more advanced class. Her grades (as usual) are fantastic. She definitely takes after her mother in the school department; great with reading, not so good with math.

Hope this post finds everyone doing well!

Newest Update!

Hi All.......I haven't posted an update in a little while so I thought I would drop a line.We went to clinic last Monday and Billy is doing so well that we get to graduate to every 2 weeks instead of weekly appts. He has started walking completely independant and was even out scooting around on a skateboard this afternoon. We have achieved 2 cms of length in his femur and have stopped turns on it. We have gain 2.5 cms on his tibia and we are continuing on for another 3.5 cms. Pin site cleanings have calmed down quite a bit and they're not getting yucky or gunky so I've gone to cleaning them every few days instead of everyday.We did have an episode of bleeding from two of his pinsites but we think he bumped it pretty hard on something. He's also completely off pain meds with the exception of every now and then. The only thing we are really struggling with now is his appetite and weight. He's lost over 5 lbs and has completely fallen off of the growth charts for his weight and height to weight ratio, so we're now giving him meds to increase his appetite, working with a nutritionist to see where we can supplement what, adding a calorie additive to his food and milk, and giving him extra vitamins.

We are done with the femur!!

Today, we have lengthened his femur 2 cms so we get to stop on that bone. We have lengthened his tibia about 2.5 cms so we are halfway there on it!!! Total length to date= 1 3/4 inches!!!!! Here are the new Xrays from this week. If you look really hard, you can see that it is kind of cloudy and streaky looking in the areas where the breaks are. That is the new bone growth coming in. We are starting a new schedule with his pin turns that is based solely on how he is handling the lengthening. I can lengthen 1/2 mm a day or 1 mm a day depending on how he is doing. Even if we do half a day it won't change the length of time in the fixator because even if we are going slowly, the bone is continuously growing in so consolidation won't take as long.

My Baby is FIVE!!!!

I honestly can't believe that, today, my baby is five years old. It seems like just yesterday I found out that I was pregnant with him. And to look at him and see how grown up he is at just five is amazing. Billy has gone through so much in his short little five years and come through it all so well that he just inspires me to be a better mom and a better person. I can hold him down to clean his pins while he screams bloody murder, and afterward he tells me that "its okay, Mom, it was an accident." He sure doesn't hold a grudge.

Everyday he is making more progress, from independantly moving around the house in his wheelchair, to standing up and taking a few steps (without the walker today). He has maintained his weight for the past week and hopefully next week we will see a little bit of gain. I figure anytime he is just going to take off running, so I'm trying to enjoy the slow life while I can.

We went to the doctor yesterday and they changed out his distraction rods on his tibia because we ran out of space for turns. They didn't change out on his femur because we will hit right in the middle of our goal next week, so I am assuming we will stop lengthening it and continue lengthening the tibia until we hit the goal on it. To date, we have lengthened 18 mm in his femur and 22 mm in his tibia. I've been having fun keeping up with turns because we've gone back to full speed on his femur and still on half speed on his tibia, so it gets a little confusing.

Ally's still doing well in school, I get her report card soon. She's decided to be a renaissance witch for Halloween and Billy's going to be Thomas the Train, and as usual, I'm going as plain, old Mom the Chaffeur.

My friend Becca's baby had his cleft lip repair last week and got his stitches out today so there are some pictures on here of his before and after shots.........It looks so good and he is completely adorable!

Today's Doctor's Appointment

Well we went to clinic today and Billy's bone growth is going very well. We have lengthened 2.03 cm in his tibia and 1.62 cm in his femur. He has another set of pin site infections (the top two pins) so he's on another round of Bactrum. He's had a lot of pain the past few days so we are slowing down on the lengthening. We are giving him a break and not doing any turns until Wednesday a.m. Then we are only turning twice a day until we go back on Monday. On Monday we are putting in longer clickers because we are running outof threads to turn. We may stop turns on the femur next week because we've almost reached our initial goal of 20 mm on it. Dr. A would rather get 30 mm so we'll see how Billy is doing next week. I also discovered that the instructions I have received on pin site cleanings was not correct. I am only supposed to use a toothbrush on the pin sites in the shower if they won't come off with a washcloth. So tomorrow I am going to attempt a shower cleaning again.

I think I'm going to give Billy a break tomorrow and let him sit home and chill out for a day.....

There are xrays from this week. You can see the actual measurements to where we are on the lengthening.

There are also pictures of Billy with "Little Guy," my best friend Becca's baby. He's having his cleft lip surgery tomorrow so she brought him over so we could get some last pictures.....These just show you how tolerant Billy can be, bcause Guy can do whatever he wants to Billy and Billy absolutely doesn't care!

This Week's Update! CONTROL!

Well this week has been kind of interesting. Billy has been learned that he has no control over several things in his life right now, so he is exercising his rights to control the few things that he can.....example.....eating.

Billy basically won't eat. He eats two bites of everything you put in front of him and then he's done. Or he won't eat at all. Poor kid weighs 38.2 lbs with the fixator on. He weighed 36 lbs when we checked him into the hospital. So he's probably lost about 5 lbs total so far and he looks like a scarecrow.

He has also learned to control his sleeping situation. He WON'T sleep in his bed. He claims that he cannot sleep without a tv on. The only other tv is in my room, therefore he's in my bed. I actually attempted to put him in his own bed one night this week. He went to sleep in mine, then I transfered him. He was back in my bed at 1:30 a.m.

This weeks doctor's appointment was a quickie. Everything looks great. We're doing great....see you next week. We go back in at 1:45 Monday. They will have to do a bolt changeout soon because we've just about maxed these out on length. According to the measurements on his bolts, we should have lengthened him about 17 mm in each bone or 1.7 cm. So 3.4 cm total for his whole leg. This is getting pretty exciting for me because when he stands now, his foot is almost touching the floor. As soon as we get it there, it should be just a few more days, maybe a week, I will take pictures and post them as this will be the first time in his life that his legs have been the same length.

Physical therapy has been a pain. Billy's knee is staying bent and he screams bloody murder when you straighten it out. He's walking pretty well with his walker now and scoots everywhere on his butt. He's also getting himself out of bed when I just leave him in there by himself.

I just realzied that I haven't posted anything recently about Ally. She's doing absolutely wonderful in school. She is a straight A student. Dance class started last month and from what I can see through the door when I am watching, Ally's one of the best dancers in her class. Ballet especially. I don't think Tap is going to be her thing......

Work is going well for me. I am back at Billy's school for the time being. Billy seems to like that Mom's working there, but he thinks he can command what time we go home so I just have to ignore him.

I will post any updates after his doctor's appointment on Monday!