8th Surgery

This month has been so busy with doctor and therapy appointments, not only Sam. Sam has seen endocrinology. I have not heard back about the labs yet, but everything else looks OK. Just more waiting and watching.

We got in to the nuerodevelopmental ped early due to a cancellation. There is definite concern in both home and school. But Sam is complicated with a lot of history at Gillette. He has already had some of the testing the doctor usually asks for, but there is some still to do. So we have opthamology and psychology to add to our list of doctors.

The fun bit there was the trip home. His big sister had her big wax museum project at school that day so I sent Daddy to see it while we were at the doctors. Then he had to get other kids after school so Sam and I took the bus home from St Paul. He was so excited but fell asleep on the way home!

Today we saw Dr Healy. you can see Sam's x ray above. The right femur has a lesion that looks about ready to break. Dr Healy wants to put a bone graft in and stimulate Sam's natural healing process to help heal the bone. That is surgery number 8.

It doesn't get any easier to hear your child needs surgery.

5 months headache free

I never did get back with pictures from Sam's birthday, sorry about that. Life is busy with 4 kids going all sorts of ways! Good busy!

I am here today because Sam had quite a headache last night. We were at the Dakota County Communications Center with his Cub Scout pack. He is loving Cub Scouts by the way! We were leaving the training room to a long hall way with windows where we could watch the call center in operation. Sam was at the front of the group with several boys who ran ahead to the lobby. Another parent went to bring them back. About 5 minutes later he told me his head hurt. I took him to the lobby and he laid in a chair for a few minutes. Then the rest of the group came out and one of the parents told me he had slipped with another kid on the highly polished floors.  At bed time his head was hurting agin and upon questioning he told me it started when he fell. I asked him to sit up so I could get a better look at his eyes and he said no it hurt to much. At this point he was almost crying, so i just let him go to sleep. he seemed better this morning.

I had to look up when his last headache was and this was the first since the first week of August. I think there have been mabey two mild complaints of a passing headach but they did not slow him down. He does seem to have a bit more of the fatigue than he did during the summer.

Today we are going to HandiMedical for a fitting for a wheel chair.

Six!

As I write this Sam is sleeping off the final hours of five. Tomorrow he will be six years old! He is beyond excited!  He has been doing well lately, just fatigue. The comment I hear all the time is he is getting around so well.

We have been doing physical therapy. He is doing well and enjoys it. Last week he pedaled from one end of the hospital to the other on a trike, I should have gotten a picture! We have also started the process to get a medical stroller, or simply put a stroller for a bigger kid. It will also have the attachments needed to tie it down in a bus. That moves at the speed of insurance. Speaking of insurance, Sam has been approved for Social Security Disability for children, SSI. I don't know the amount yet but it will include medical.

Sam absolutely loves school. He adores his kindergarten teacher, but still occasionally mentions Miss Kim his preschool teacher from last year. The first trimester is done already. He had a report card that showed he is developing a lot of the skills needed for school though he is busy and there were frequent comments about his difficulty staying focused without adult help.

The photo above is from this past weekend's family Christmas celebration. Grandma was teasing him a present and he was flapping his arms saying, "Just give it to me!" Tomorrow is his birthday party at Chuck E Cheese and there will be more pictures!

Christmas Eve two years ago Sam broke his right tibia and fibula. The start of this journey. A year ago we were just out of the orange cast and another surgery in December. I don't even really know what to say. We have been through so much, good and bad.

1 Year

It has been a year. Sam got to go trick or treating last night. He's not sporting a bright orange cast today. He is the spider-man at the left side of the front row.

My Little Guy is doing well. The little blip that sent us to ACOR in early October was just that, a blip. His body spit out the irrating stitches and healed up nicely. He still fatigues quickly and about once a week he or a sibling comes to me and says his leg hurts because he tried to do something. When I ask where, he points an area near a known lesion.  Dr. Healy agrees with me that there will likely be other fractures. We play a balance game, keep Sam safe but still let him be the rambunctious boy he is. We have no doctor appointments scheduled until March. He will start physical therapy tomorrow.  Today I need to find a way to get him to eat something other than Halloween candy!  ;-) What a great problem to have!

Trip to ACOR

ACOR is Gillette's acute orthopedic clinic. The last few days Sam has had increased pain and his limp is getting worse. Monday he was at his cub scout den meeting and did a lot of walking and trying to keep up with the boys. I had to get the stroller to get him back to the car. He asked for pain meds that night. Tuesday morning at school, he went to the nurse and asked for pain meds. I decided to call the triage nurse. We ended up cancelling his therapy eval appointment and instead scheduled an appointment for ACOR clinic. Long story short, he is spitting stitches and they are irritating his scars. No sign on infection now but we are to watch closely for that. They can't explain why his limp is worse. Xrays looked good for him, no obvious cracks or fractures. There could be a micro-fracture that is causing problems. We are to follow up with Dr Healy in a few days, whenever they can squeeze us in. We stopped at BK on the way home, so here he is showing off his stickers from the hospital and crown from BK.

It was hard watching him Monday night and he was in tears at bed time. Me too. I woke up Tuesday morning singing a song that my kids sing at church. As I put the kids on the bus I felt God was telling me that we need to go the distance with the fibrous dysplasia.  The song was written by Justin and Jeri Austed at our church. They wrote it for the sports faith camp this past summer.


Go big, big, big!
Go long
Go deep, deep, deep!
Go the distance

You want to finish what you start
Hold to the faith that's in your heart
When things get tough, don't quit
See the goal and go for it.

No one can do it on their own
With God, we'll never be alone
No matter what we face
He will help us run this race

We'll fight the fight
We'll keep the faith
We're willing to change if that's God's way
He gives us strength to run the race
We'll go the distance

Kindergarten!!!

Kindergarten is here! Sam is loving it. It took quite a bit to get things ready, but we did. I almost scheduled the surgery the last week of August. I'm so glad I didn't. The day before school started we did our traditional get up early an go out for breakfast and clothes shopping to help jump start getting up early thing. We were at the Mall of America and he did a lot of walking with his walker but we did notice his right leg looked different the way he held it.

The week after surgery, before he was walking on a regular basis, he met his teacher for an assessment of where he was. This is done with all the kids. The teacher had lots of questions about what he would need and I didn't have real firm answers. I emailed her the next week with an update. That started a fury of emails and phone calls to make sure everything was set. The school has assigned a para to him to insure he is safe. His teacher told me one day that she caught him trying to climb up the play fridge they have in the room.

First day, pictured above, is an orientation with parents. He was disappointed that it was so short and I was with him the whole time! He was so excited to get on the bus the next morning. Wouldn't even turn around for a picture! We do hand the walker up to the aid and he uses the railings to climb with.

Sam is not using a walker at home any more. We send it to school to use in the hallways, but he doesn't use it in the classroom any more. His official restrictions from surgery have ended. The school wants a statement from the doctor about what he should be doing and not. We do not have a visit scheduled until March. I'm trying to get hold of the doctor for this.  He starts PT next week. So hopefully the therapist can give us some answers the school is looking for.

I did get the results of the DXA scan. Overall he has good bone density, looking at the whole body scan. his hips (which I am learning refers to the pelvis and the proximal femur attached to it) and femurs are fragile though, espically the right distal femur. So there will be another fracture someday. A few times a week something happens that makes my heart stop. I get this sinking feeling, thinking momentarily that something has happened. Like this past Sunday. I was in the elementary kids program, helping in the back with the tech stuff. A volunteer from the preschool-Kindergarten room came to the door and talked to a worker there. I had the sinking feeling that lasted the whole time until I got up to the volunteer and found out he was only acting out and not cooperating. We are there for two services and he was bored with things by the middle of the second service.

Sorry it has taken me so long to post about school. I guess once I finally got it all set up I just collapsed in a way. I am starting to come around a bit. I have started going to the gym again to use the elliptical.

"We are not praying because we believe that God will heal our Audrey. We don’t know that He will.

We are praising Him because He can. "

from angiesmithonline.com