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

Long day of appointments....done!

Today Sam had 2 appointments and a DEXA scan, at two different locations.

We started in St. Paul to meet with Dr. Sheridan, endocrinologist. Basically things are good, few things to watch and we go back in 6 months. His T3 was elevated but his TSH was normal. T4 was normal so for now we just watch. T3 can be elevated due to growing too. We are not going to do the pamidronate right now. While pamidronate does help strengthen the bone, it also changes its' structure. There is not enough long term studies out there on pediatric use. it is technically considered an off label use. If Sam were to have more fractures, like more than 5 in a year, its' use will be reconsidered. I didn't ask but I know it is used in children as pain control too. I will ask about that next time. 6 months will give us a good amount of time to see how he heals from the last surgery.

Dr. sheridan's nurse felt bad for us that we were running back and forth, so she gave us two coupons for free parking before we left. So before leaving St. Paul, I got Sam a treat from the Ginko cafe. We then took off for Burnsville.

There we met with April, the orthopedic nurse practioner. She pulled off the tagaderm and steristrips from Sam's incisions. I think this was the hardest part of the day for Sam. I ended up giving him acetaminophen and oxy-codone at this point. The incisions underneath looked very good. He can now go in water. So maybe a bath tonight will get rid of that dirt on his legs that will not scrub off. She went and talked to Dr. Healy, who was there too and came back and told us that we didn't need to go back for 6 months. Kind of surprised me. I thought we would get an x-ray close to the 6 week mark to see how the holes are filling in. Sam will get the standing lower body x-ray to check on everything. We will be starting PT in October.

We then got back in the car and went home to Rosemount to pick up Sam's sisters. I figured the DEXA scan would not finish before Richard had to go to work so I took them with. Well I took Ella with. Zoe I dropped off at her friends for a slumber party in Eagan.

Back in St. Paul we had the scan. this is the same kind of bone density scan used for post-menopausal women. however for kids they do more scans. It was actually 6, the lumbar spine area, right hip, left hip, right femur, left femur and a full body scan. The full body scan was the longest. It was actually 3 passes of the C shaped arm, right side, middle and left side. Ella did great waiting for us. Sam had a hard time keeping his toes still. He kept wiggling them and the hip and leg scans had to be restarted because of it. it will take a week to get the results. We finally got it done and could head home for the final time today.

So 6 months until we see a specialist again. Feels kind of strange after so many appointments for the last year. Time to regroup and let Sam be a kindergartner. Though I kind of felt this way August 2010, one year after the tree fell on my kids, my mom died, Sam broke tibea, then femur. Sam broke the other femur 6 weeks later. So what will happen?

Getting ready for school.....

Who would have thought that getting ready for school would include being able to go to the bathroom on your own and climbing the bus steps? Sam is mostly scooting around in the house. He did walk quite a bit with the walker this morning at the park. I also see him starting to squat again while playing.

The hardest thing to gauge is pain. Last week he complained about taking meds at bedtime so I told him take it now and we will see how you do during the next day without meds. So Friday, Saturday and Sunday he was without pain meds. He seemed ok though kind of crabby. At bedtime Sunday, after spending the day at my sister's, he asked for pain meds at bed time. He slept better than he had the last couple of nights. This morning I didn't give him any. While we were at the park I asked several times if he was tired or had pain and he denied it each time. However at one point he crawled into a tube joining two play structures and sat there the longest time. We played a bit, like hid a seek through the holes and poking each other. He finally came out and I asked if he wanted to walk with his walker or to ride in the stroller. He chose the stroller. That seems to be an indication he is in pain, but he still denies it.

Hopefully over the next week he continues to strengthen and come school things will go fine. Friday we have a few appointments coming up: a DEXA scan, endocrinologist, and orthopedic nurse practitioner. The free T3 lab test came back elevated so I am waiting what this will mean. McCune-Albright Syndrome?

Wishing....

While we were at Wal-Mart, we met another family back to school shopping who had a child about Sam's age in a medical stroller made for a bigger kid. It also had points to tie it down in a bus. I came home and searched and I found the Otto Bock Eco-Mobility System at Adaptivemall.com. With the tie downs and a 5 point harness, it is about $950 though. I need to work out how to get this for Sam. Why I like it: 1. It is good size for Sam, going up to 100 lb so it should fit for a while. 2. It folds like an umbrella stroller so it will fit in our car, 3. It has tie down points so it can be used on busses. (school, feild trips)

Since finding this one, I found the Convaid Sport. It comes in orange, Sam's favorite color. However it starts around $2,800. Even more out of reach.

I Think Sam Is Finally Turning a Corner...

Today, he discovered he can walk. actually he was roughing around with Aric and Zoe and discovered he can stand on his knees. I then told him if he can do that he can walk. So he got up and tried. He is still very slow and walks with bent knees but it is walking. Just after that discovery, wwe went shopping for back to school supplies. i got him a size 1 pair of shoes. He rode in the stroller the whole time and by the time we left Wal-Mart it was 5.5 hours since the last pain med dose and I could see him getting worn out from the pain. After pain meds and we got home, he was in a much better mood and was scooting all over down stairs. So we are down to pain meds, ytlenol and oxycodone, three times a day.

I recieved appointment confirmation in the mail for Sam's 2 week wound check. It was scheduled for the first full day of school for Sam. :( I called Gillette and talked to Amanda and she did some calling around and got Sam's DEXA scan scheduled for 8:45 on Sept 2. His Endo appointment is stil 10:15 or so, both in St Paul and then go to Burnsville to see ortho NP at 12:40 or so. All on the same day and Sam can start school with out having to miss school the first week for appointments!

I Didn't Expect This.....

It is post op day 4. This whole thing has been more difficult than I anticipated. He is still needing pain medication. I am drained. Sam is refusing to walk. I was told to have him walk each day. He keeps his legs bent and will not stand up straight. Whines that we should have brought home a wheel chair. Meanwhile I am doing everything for him. He took a nap this morning about 2 hours after getting up then fell asleep about 6 pm, before dinner. Tomorrow we are supposed to meet his teacher. I hope I can convience him to go. I saved a DQ gift card back that we were given for a meal over the weekend that I will use to entice him for lunch afterwards with.

Home again!

We were finally released today. We had some really hard times since that last post. About 1 am Sam woke up in pain, lots of pain. Took some to get him to take meds but he finally did and fell back asleep. From then on we seemed on top of pain far as medicating goes. the other hard spots were PT. It was so hard and scary for him to get up and walk with the walker. The second PT we tried stairs and that was really hard for Sam. When we finally got him back to his wheel chair and were talking for a bit, he started to fall asleep. I put him in his bed and he slept for an hour and a half before we went home. he was so crabby this afternoon/early evening that I gave him to much medication before bed. He is on tylenol, valium, and oxycodone. The valium is 2 - 4 ml a dose, the oxy codone 2-3 ml. I gave him 4 ml of both. I wanted him to sleep so I could and messed the doeses up. I called the hospital after I figured out what I did and they said it was ok, just mabey wait an extra hour to give him his next dose and plan on 3 ml of both valium and oxycodone so I don't mix it up again. I need some sleep. I hate that I have to give my baby such strong meds.

7th Surgery

So it is done, now the healing. Today started well. We left about a half hour before I wanted to just because Sam was ready to go! Turns out it was a good thing because the parking ramp was so full we ended up parking up on F had to take Region's elevator down to D go out and over to Gillett's entrance.

We finally got in, registered and over to imaging for a couple of x-rays of Sam's back. Then down to 3 for surgery. Signed a few forms. Waited a few minutes before being called back. This is our first surgery with Gilette's new surgical space opened. It is so nice!! There is more room to manuver strollers and wheel chairs around. There is also more privacy in the pre surgical and PACU spaces. It just looks more beautiful, calming and has cool interactive technology to play with!

Our friend Kay had even more problems parking and was a little late. She met up with us while we were in the pre surgurey area. We also met with the anesthia doctors. When discussing pain options I did nix the idea of caudal block. We just operated on Sam's brain 3 months ago and he had the chemical menegitis, I didn't want to mess with CNS at all. They knew all this too and were fine using other pain control methods. We also decided to try versed before surgery to see if it helps that last minute panic as Sam goes under.

Dr Healy, who did 3 or 4 surgeries today, came by too. he had to sign Sam's legs at all the points he was going to cut. Sam's back x-rays looked fine and at this point is just a wait and see if more pain develops kind of thing. Right now it is real minor pain, but with all the FD on the MRI and spondylothesis on another x-ray I wanted to check it. There is a small chance that removing the IM nails could cause a fracture. He would be doing an x ray to check after surgery is all done.

Finally everything was ready. Sam got his versed. We were taken to OR2. Sam was placed on the table. Orange lip gloss placed in his mask and slowly it was put on his face. He still didn't like the gas, but not as bad as last time. He was told to blow it away. Sam did put up a last minute stuggle. Trying to pull the mask away and squirm away in general, not real vigerous but still had to hold his hands down. He finally was out. I kissed him and was taken back to the pre surgical area.

Kay and I took our things up to Sam's room on what is now called Orthepedic/Surgical floor, formerly 4 west. We then went to the Ginko cafe to eat. When we were about done I got the first page. The plate was almost all out things were going well. We took my cooler back to Sam's room and headed back to the surgical waiting area on 3. Another kudos to gillette's remodel here. This waiting area is so spacious compared to the last one and filled with window's where there were none before. It makes such a difference to the emotional mind set of a waiting parent to have so much natural light!

Surgery was finally finished and Dr. Healy came out. Things went well, no mishaps. It was another half hour or so before they came to get me. I said good bye to Kay at this time. It was so good to have someone to wait with me and talk with. It turns out a neighbor of hers is someone I use to work with long time ago and we know a lot of the same people.

The nurses are real good at coming to get a parent and not letting on that thier child is upset. The nurse brings it up on the way back to the PACU, but very calmly. I get back there to find three people surrounding Sam's bed and he is crying in pain. The morphine was not working this time. After some discussion and calling in the anesthia doctor another medication was ordered and that helped take the pain off enough to let him be distracted with a movie. Finally calmed down he was able to get off of O2 so that we could go up to his room.

He was settled in his room and started on some sips of water. He quicly progressed to applesauce and pudding. This enabled him to get oral pain meds which are longer acting. And to Sam's delight also enabled him to get a dinner tray! He chose a turkey sandwhich.

Getting up to his room a settled also gave us time to skype home. Seeing his brother and sisters gave him such a big smile and really helped him. I think the others, or guys as Sam calls them collectivly, enjoyed it to. I know they called me several times though out the day asking when we could skype.

After dinner, the nurse and I got Sam into a wheelchair. We went down to the main clinic waiting area just as the dog show ended. Sam got to see all the dogs and collect a few more of thier cards. We then went to the new family room and played. he was thrilled to see an x-box! Though it was short lived compared to his normal like of video games. Played through a few more toys and I could see he was getting tired. I got some hot chocolate. The new family room comes with a nice kitchen area with a Flavia machine. After skyping home one more time and seeing Daddy, we settled in for the night.

Over all Sam is having more pain than I anticipated. It is controlled fairly well but I can see he is not himself. About 15 minutes before his bedtime dose of pain meds he was uncomfortable and wimpering with the pain coming back. The insicsion on his right leg also bled some. The nurse wasn't alarmed, just noted it and put an ice pack on it. That has never happened before. Mabey a little seeping but not lots of blood under the tagaderm.

It has been a long day and I need to get to bed. Sorry for the book. I will also proof it after we get home.

Oh two more things. On the way up to the room from the PACU the nurse shared with me that Sam had told her when he first woke up that this place was horrible! Amusing considering how excited he was to get here. This morning, I had one of those anxiety dreams...Sam was eating food when he was supposed to be NPO, I had to get Ella someplace else for a a procedure of some kind and it was via plane and we were going to be late. the airport had signs to the gates made with masking tape on the wall. All the while I was tending to Ella, i wasn't paying attention to Sam and he was not prepared to surgery. Anxiety dreams!

God is here...

Yesterday (Wednesday 8/17) I was in quite a funk all day. I was anxious about surgery and the risk for fracture following and just where this disease is going to take us in the future in general. Also I had read the account of a friend's goddaughter, a preemie born 2 weeks ago at 25 weeks gestation, dieing. that brought up lots of emotions for me. Reading of the parent's and my friend's grief and remembering my own experience 11 years ago losing Zachariah at 21 weeks. I managed to get the kids to the park for a while and do a few things around the house. I also made it to church. The girls had an activity. Sam sat with me in the service. We had parked next to a vehicle with someone inside. We all got out at the same time and I realized it was Miss Deb and her husband. Miss Deb is an aid who was in Sam's public school special ed preschool program last year. I knew they went to our church but we had not been able to see much of each other over the summer. Talked a few minutes walking in to the church about kindergarten coming up, and the next day's surgery. Got into church and we went separate ways. When it came time to find a seat I let Sam pick where we would sit. He kind of zig-zaged back and forth and finally sat next to Miss Deb and her husband. After the service was over she asked if she could pray for Sam, he said yes and I was so.... awe struck, blown away, I don't know how to describe it... just comforted by her prayer, her wisdom, her love for Sam, and me too! She gave us each a big hug afterwords. We also met with someone from the prayer team. Just to be so covered in prayer. I don't know if I can count the number of people across the nation praying for us today. Then driving to the hospital this morning it really struck me Philippians 4 :6&7 is so real. The peace of God, which passes all understanding was with me today. Even talking with Dr. Healy about Sam's disease and long term outlook. There is no way to know what will happen but that's OK, God know and understands.

Ready and waiting....

Well bags are packed, except a few last minute things. Sam is up and playing on the computer. After having his orange jello for breakfast!

Philippians 4:6 & 7
Do not be anxious about anything, but in every situation, with prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus.

Ready for yet another surgery.....

Almost, I still need to pack. We report 10:30 Thursday morning. It is supposed to start at noon and last 1 hour 45 min.

Today Sam saw the nuerologist. Over all that went well and he only needs to go back if something comes up. He is doing well since surgery and hopefully the headaches continue to diminish. The nuerologist was kind of concerned that he had accidents with some of his headaches and questioned me closely about the possibility of siezures. I don't feel that is happening.

This evening Sam had his H&P, the pre-op appointment. Other then waiting it went well and he is cleared for surgery. We also did the blood draw for the endo appointment on Sept. 2. He didn't like that part!

I'd like to think that this will be a breeze and barely a blip in the scheme of surgeries for Sam. There is a part of me that is still scared though. It never gets easy seeing your child go under anesthia. I think the emergency situations are almost easier to deal with then this waiting. I have decided to accept help from my church in the way of meals afterwards and someone to come with me to the hospital. I'd still like to get skype set up with our other computer, but not sure that will happen. Sam really misses his siblings while at the hospital.

There are 3 weeks until school starts. But i'm feeling like this is the end of summer. Finances didn't work out like I hoped so I couldn't get all the camping gear we needed to do that. With the help of friends I was able to take the kids to both water parks near us this summer. They like the Cascade Bay in Eagan better. Sam had a blast on the slide. In the picture above, you can barely Sam's head poking above the bottom of the slide. By then end of the night, he was crawling up the stairs to the slide he was so tired. He still wanted to keep going though until they kicked up out!

Miracle Treat Day 2011

Yesterday was Miracle Treat Day. You buy a Blizzard from DQ and they make a donation to Childrens Miracle Network. The hospital, Gillette Children's Specialty Healthcare, Sam goes to for everything is part of the network and recieves funding from them. We enjoyed our Blizzards!

More tracking...

The last headache bout last week lasted three consecutive days. I think I posted on day two I believe. This morning he has had another headache and accident, making it difficult to do what he wants. He was kind of whimpering as he tried to go take a bath. A chiari mom friend from facebook assures me that it takes time to heal from the surgery. Her son took a year to become headache free.

Amazon

On recommendation of a friend, I have applied and been approved for Amazon affiliate program. If you could clink on an Amazon link from here before shopping, I will get a small percentage of each purchase. I hope this could help pay for some parking, gas and food for all the trips we have to make to St. Paul to see the amazing doctors at Gillette.

Little Guy with a Big Story is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to amazon dot com.

Thank you for your support in any way you can offer it!

More headaches.....

Sam had a headache yesterday and again today. These look more like what he had before surgery where he wants to lay down and restricts his own activities. He was even doing more of the sitting upside down on the couch again. It is one of those things I didn't realize he was not doing any more until I saw him doing it today. Yesterday he had not been outside or doing much before hand. I wanted to go get his blood drawn for the GNAS1 gene test and delayed going for about three hours for Sam's headache to pass and a storm to pass. Today he has had three urine accidents. He went out to a park for a while with Rose and the girls and came home soaked in sweat. Now at bedtime his head hurts. :( He had daddy carry him upstairs and even took medicine before bed for the headache.

I also want to give a shout out to Kelly, the nurse at Gillette Burnsville who gave Sam the lidocane cream. Sam was scared when the poke was made then was pleasantly surprised that it didn't hurt. She also got us set up for next time so the blood draw in preparation for his endo appt should go well too.

Next, Last?, Surgery Scheduled

I have set up Sam's next surgery for August 18. He will have the plate on R femur removed and the flexible titanium nails inside his L femur removed. We have planned an overnight stay for pain control. the surgery starts at noon, we report at 10:30. We will have x-rays taken just before that so a little earlier than 10:30. I want to check on his back. he complains occasionally of back pain. If he was a typlical kid I wouldn't worry about it. However I know that there is FD in several vertabrate and the spondylothesis between L5 and S1. I just want a baseline of where he is. His limp is also variable, sometimes almost unoticable, this past sunday i saw him dragging his R foot. The morning of his surgery will be a challenge to keep him away from food and drink. I think I'll try to find a pool for an early swim. I also want to plan a family trip to a water park before the surgery since he will not be able to swim for a few weeks after surgery until the surgical scar completly heals.

I found an x-ray on line that shows why we need to get the hardware out now: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2656851/
I am having trouble getting the link to work to just the pictures. If you go to the article then scroll to the end, you will see two x-rays showing hardware with bone grown over it.

Note to my self....

Just a quick post so I remember....Sam complained of a head ache as I put him to bed on Thrdsday, July 14. He woke up ealy the next morning crying because is leg hurt. I helped him move and recover himself and he went back to sleep. He didn't remember anything about it when hegot up for the day later on. Over all his endurance seems to be geting better and he doesn't have the general drained, weakness he had before surgery. We are off to swim this afternoon on this hot huid day!

6 week follow up

Basicaly Sam is doing great. We went to see the nuerosurgeon today for a follow up. Sam can finally get his feet off the ground. A couple of weeks ago I saw some buldging by his scar, it only lasted a caouple of days and he did not seem bothered by it. Dr said it was likely a small leak that was reasorbed. He said that the "dust hasn't settled yet," and this, along with headaches, could happen for 6 months. One thing new doctor said is that he was thinking that the chiari wasn't that bad and he wouldn't need to open the dura before surgery, but during the surgery it was worse than he thought so that is why he opened the dura and put in a patch. Sam has no restrictions and general anesthia will be even safer than it was before. Sam will not need an MRI as a follow up unless there are symptoms. it's not worth the sedation and all. We go back to see the doctor in 6 to 12 months. 6 months if there are problems and more 12 months if there are none.I also asked about checking other kids since many other parents I meet on the internet seem to be told to have thier other kids checked. Our doctor said that there is only a 5 percent increased chance of a first order relative also having it. In all if there are no symptoms, don't look.

VBS

Our church is having VBS this week and Sam is excited to go each day. Part of the day is Stretch and Grow, a kids exercise program. Yesterday we sat out that portion, but Sam was disappointed to miss out time with his group. today we stayed in the gym and I let him participate but no jumping and slower pace. If that was possible with him! Part way through though his head hurt so we left and sat in the couch room for a few min. The teacher, coach or whatever her title is, even noticed that Sam didn't look good as I took him out. The head ache stopped right away and he has not complained since of anything. I guess that was the "no streneous" part of his restrictions. Tomorrow I'll be in the nursery so I'll have his group leader drop him off on the way to the gym.

Went to Playworks yesterday....

Playworks is a huge indoor playground the kids love to go to. After playing for a while I could see Sam was slowing down, sitting a lot and looking very tired and run down. But he didn't want to give up and sit with me. he always wants to be where the action is! I offered him some Tylenol and he took it no fuss at all. He must have been in pain because he usually refuses medication. Not long after he was looking a little better and continued on playing. He even managed to walk all the way back to the car! I was a nervous wreck jumping up each time I heard a peep from him, saw him sitting, or didn't see him for a bit. At one point he bumped his arm and was holding it. It turned out ok, but at that point in my mind I made plans on where to seek treatment and such if something should happen. Will I ever be able to just play again?

Four headaches since surgery....

I am a little bummed. I took the kids to the park tonight and Sam did his usual hang over the swing thing. After a few minutes he came to me and said that he was tired. I asked if his head hurt and he said yes. Then he staggered off to the play structure. After sitting on the slide for 5 minutes or so he felt better. I am just disappointed that it was such an obvious cause. The others were the first day after we came home from the hospital (5/23), the really hot day we had the follow up at Gillette (6/9) and Wednesday (6/15) when we got to bed so late.

Ortho check up.....

Sam continues to do wonderfully far as the chiari surgery goes. It continues to be a struggle to keep his feet on the ground and no strenous activities. But he found a way to do so this weekend at the Family Social event picnic as you can see in the picture. I am also posting a picture of his scar. All the stiches have fallen off. there are a few scabby looking things but overall looking good.

Today we saw Dr. Healy to check up on his legs. The x-ray showed his left leg healing well. Bone is being remodeled and the hardware can come out anytime. This will be planned for later in the summer. Dr wants to give him the summer to play and swim and continue to stregthen his legs on his own. Ssurgery would prohibit swimming for about 3 weeks. We will wait on therapy until after surgery since the surgery will involve moving muscles. There will be nail holes in his R femur so while he can weight bear, there will be no running and jumping for about 8 weeks afterwards. Dr Healy also wants to make sure the nuerosurgon has no restrictions on surgery. I asked about the back and x-rays will be taken day of surgery to make check on things there.

Dr. Healy also brought up balance in living with a disease. While Sam will likely never be a good canidate for football or hockey, we can't put him in a bubble to protect him from all risk. Each family is different in what they are comfortable with allowing thier children to do. Sam is pretty hard to keep down. I guess I need to accept the fact that there will be other fractures. I pray it is not his back. School is another area to deal with. i think they are *very* scared about fracture risk. They didn't even blink when I asked for special ed bussing to protect against shoving and slipping. I think our struggle will be how much to allow him to do. Espically come first grade and PE class. I am curious to see what he will be like without the hardware and on the pamidronate. He is having a lot of pain now, though he does not say so. I thought of another question to do with surgery on the way home but now I forgot it.

Love this Little Guy......

Is it possible to love him any more? Today after he got home from school, he excitedly looked through the little bag of gifts his teachers gave him. One of the gifts was bubbles we enjoyed. Another one was a Clifford book that each of the teachers, aids, speech and OT had signed. I read all the comments to him and he started crying. We just sat and snuggled for a few minutes. He never told me anything, but I did tell him that saying goodbye can be hard. He has had such a fantastic year a the Early Childhood Learning Center and really fell in love with his teacher Miss Kim. I have so appreciated some place to send him where I was not concerned about his safety and well being and he was greeted with such enthusiasm each day. On to new chapters of life!

Rambelings.....

Ok this week has been busy and not as remembering as I thought it would be. First of all Sam had a wound check with the nuerosurgery nurse practioner on Monday and that went well. They say Sam is looking fantastic. His scar is healing well. We can use silicon bandages or maderna to helpprevent keloids from forming, also lots of sun screen. The puffy face, weight gain and frequent unrination should resolve itself as his body gets used to not having the decadron. Unfortunately he stil needs to keep his feet on the ground and no strenous activity until we see the doctor on July 5.

A year ago....Monday June 7, the doctors talked and decided to operate and put in a plate to fix the fracture and take a biopsy. The afternoon of June 9th was when they could do it. I remember the day before, we took a walk outside around the hospital. At one point I stopped and asked him if he wanted to keep walking or turn around and go back to the hospital. Sam's answer was walk home! I took him to a dog show that night, but he fell asleep during the show. Then he woke up and was awake so late. he was miserable the next day waiting for surgery because he could not eat. Finally fell asleep just before surgery.

Back to this year. Tomorrow marks an end of a stage in our family's life. Sam will finish preschool. We will be done with the Early Childhood Learning Center. Next will be Kindergarten.

It's been a year....

A year ago I was making dinner and Sam had found a cookie left over from after school snacks and was eating it while pacing in circles in the living room. There were pillows and cushions on the floor from a movie we were watching earlier and Sam tripped on one. I'll never for get his scream. Once in a while he screams kind of like that in play, just the start of it and it is just enough to give me that moment of panic before I realize it is only play. His right femur broke when he tripped. I could see a lump just below his hip and didn't think I could put him in the car, espically a car seat, and transport him to the hospital with any measure of comfort or safety so i called for an ambulance. It turns out that lump was the little bit of bone being pulled out to the side by the butt muscles. The ambulance driver recomended going to Regions since Sam was already a Gillette patient. Saved us a transfer. Sam was kept comfotable through the night and his leg was put in place (closed reduction) a spica cast was put on under general anesthia the next morning. It was his first surgery. the doctor could not get the bone to meet end to end. it was overlapping a little bit. That was a Saturday morning and he was kept comfortable over the weekend and I was showed how to care for him in a spica cast. Monday, the on call doctor meet with Dr. Healy who had seen Sam in March and they also called Dr Clohisy, bone tumor specialist at the U of MN and it was decided to operate and put a plate on his femur. they however were not sure exactly how to do it. Plates are not made for 4 year old bones. He also has another lesion further down on the femur that was slightly misshapen his bone. Medicene is as much art as it is science.

Well yesterday instead of going to the hospital in the evening, we grilled out and played in the hose. Earlier in the day we took a picnic lunch and went park hopping. At Charlies park, there were many army worms and he was fascinated with them as the picture shows.

We spent a week in the hospital. I'm sure there will be more posts about the week as I relive it over the week.

2 weeks Post Op

I have uploaded two pictures this week. the first one is with his hair moved out of the way to see the scar better and the other is with his hair down. There is not a whole lot to report this week. I broght him back to school last Friday and he was tired by the end of the day. Though I think some of it was that he realized how much he missed school while he was in the hospital and was telling me about it while he was in the car on the way home. Tuesday I drove him to school and Wednesday he finally got up on time so I sent him on the bus again. He has been enjoying school alot this week. He finished his decadron on Wednesday. Please pray the chemical menegitis does not come back as the drug leaves his system. We go for a post op follow up with the nuerosurgeon's nurse practicioner.

Here is Sam's scar 8 days post-op. The nuerosurgeon curved it in the hairline to make it left visible after it heals. There are disovlable sutures that make the skin a little irrated and pink as they dissolve. It has been a roller coaster of a week. Over all since coming home I have felt just spent. I'll try to get some house work sor something done, and then just collapse. I am so grateful to family and friends for prayers first and for most. I know Sam's exceptional recovery is due to the vast amount of prayers for him. 9 days post op and he is at school. There are kids that after this surgery are not even out of the hospital at this point. I am also thankful for the support we have gotten. Meals and food dropped off, (with paper plates!), have been so helpful. The many texts, phone calls, emails and other forms of encouragement and support have been priceless to me.

It was a weird feeling driving away from Sam's school this morning. I know he is well cared for and loved while there. It's only a half day program too. Sam has been with me or my husband 24/7 since the surgery. I come home and checked facebook as three friend's children have had brain surgeries since Sam and I have praying for them and wanted to see how they are doing. The first thing I saw was Josh Wilsons new video "Fall Apart". God is so good and gives us what we need when we need it. So many times over the last year I have fallen apart, and I don't know when it will end.

1st full day home.....

We are on post surgery day 5. We all went to bed early last night and got some good sleep. Sam woke up just before 8. he said he had a headache. I gave him his steroid and took the girls to school. He played on the compputer. Sam has been a bit subdued today. Complained again of a head ache about 1 and said it was a 3, on a pictoral scale to 5 that was given to us at the hospital. Refused medication though and said it was better, but he is not his normal raring to go self. He is watching a pokemon movie and I'm going to go get the girls.

We are home!!!

I am so gald to be home!! So is Sam. Sam is on a course of steroids to help keep the headache and vomiting that he experiences yesterday from coming back. chemicl menigitis is another name for what he experienced. He is doing so well. I ams so tired I do not have much to say but thank you everyone for your prayers and support. Oh, if you have need to park in a parking ramp, stay away from bird nests. My car was a mess from sitting under one for 4 days.

Sand Art and Tantrums....

Sam has continued to be very wired today. I think some of it was stress, some boredom and some medication. Dexadron. We went to the afternoon activity of sand art pictures. He enjoyed it then we walked around the hospitals alot! I'm suprised his legs didn't hurt. he got a bath tonight and enjoyed that. We came back to our room and watched some tv skyped with a friend and settled down for the night. Sam said he was hungry, When I started to say that we'll eat in the morning, he lost it and escalated to a huge fit. I think it was stress of the week coming out. He is really missing his siblings. he finally quieted down and fell asleep. About 10 minutes later the nurse came in with meds. :( He had some at dinner and I thought that was going to be it for the day, or until midnight. We got him akoken and medicated. Then he got his snack. Pudding the nurse brought with the meds and a poptart we had.

I sure wish I could just let all the stress out with a big ol'trantrum. I miss my family. Aric is having a rough time away from home. My baby had brain surgery. I can't sleep in the hospital. I pray something doesn't happen to keep Sam here another day.

Wow, what a diffenence a few hours make!

Sam had some zofram a bit before lunch and the steroid with lunch and wow there is no stopping him now. He is up and running back and forth in his room! we took a long walk and finally with the help of the tv, Avengers, and an orange popsicles. He is sitting. i wonder if we can leave tonight?

Aseptic Meningitis

Well our plans to go home have been derailed. Sam woke up in pain. It was at first assumed this is because pain meds were at low doses and stretched overnight and he was so active yesterday. More meds were given for pain and muscle relaxing. An hour later he wanted to go to the playroom, but in a wagon. While there he sat up to play a game and after a minute or so laid back down and wanted to go back to the room. We were stopped by a nurse who took out his iv, then the nuerosurgery nurse practicioner came by. While we were talking he got into bed and threw up. So we are staying another night and starting a steroid for a couple of weeks. The cerebal spinal fluid does not like having blood mixed in, which happens during surgery. It causes swelling and the aseptic meningitis. Aesptic means it is a sterile meningitis, not bacteria caused.

Rambelings of a tired mommy.....

Sam has slept well. it is almost 7:30 as I write this and he is still sleeping. He was only woken up once for pain meds. he is moving around in his sleep like usual. He is definately feeling better! Last night was hard to keep up with him and more so keep him safe. More than once I or the nurse told him if he falls he won't be going home tomorrow.

I on the other hand did not sleep well. This pull out bed is so hard and uncomfortable and I think we got the only hot room in the hospital. Everytime I have been here it has been cold. so I brought long sleeve pajamas. Not needed in this room.

I am anxious to get home and be in my own house and bed. Mabey I can get someone to come over and watch Sam so I can sleeo. I am so thankful for the outpouring of love and generousity from friends and family. I have food waiting for us at home gift card to more fast food from church and the girls school. My parents drove through rush hour to take my kids to my sisters for the weekend. Then the prayers. I am reminded of james 5:16 "The effectual fervent prayer of a righteous man availeth much." It has. sam is going to be one of the rare kids who go home three days after brin surgery! We still need to pray as there is a window of about 5 to 14 days, even to 21 when aesptic menajitis can form. About 1 in 4 or 5 kids get this following chiari decompression.

I should get things together and get ready to go home!!!!

Post Surgical Day 2

Well new day has brought about a new kid! Sam has been doing great today. His last dose of IV meds was about 4 am. Today he has been on oxycodone, tylenol and valium. Meds we can manage at home. Sam got up and played in the playroom for a while this morning. We had a visit from Becky and Courtney. They gave him a gift of moon sand a plastic frog and a clear bucket to play in. Well Sam took it all made an habitat for the frog! Even decorated it with stickers! After lunch we took a walk with a wagon and he fell asleep and has been sleeping for about 1.5 hours now. Physical Therepy should be here in a few min. I wonder if he will be waking up? The nuerosurgon nurse practioner was telling me yesterday it is really rare for a kid to go home on day 3, that we should plan on day 4 or 5. Today she said he just may be one of those rare kids that can go home on day 3! that means we may get out of here tomorrow.

New Room, kind of....

This afternoon Sam was moved off of PICU to the nueroscience wing, used to be 4 south. That unit is being remodled so Gillette is leasing the old 7 west from Regions and that is where we are now, room #7327. This is an old hospital wing, the first thing you think of when you step off the elevator is instatution. Gillette has done a little remodling of the area so it is not as bad as that first hallway, but still old. If the PICU is any indication, the new wing will be nice when it opens next month.

Sam fell asleep right after we got to the new room and slept for almost 3 hours. Slept so soundly he didn't wake up when his sisters and brother came to visit. He was in a much better spirits when he woke up. Ate a good meal and even created a new recipe with ketchup and tarter sauce! then we had a visit from Izzy a therapy dog. Sam got to feed him a frech fry! just before bed we got to skype with some good friends and that cheered Sam off so much to share jokes and show off his owie from surgery. It felt so good to see him sitting up and talking. Skype is a fantastic thing!!! Now we are settling down for the night PT will be here in the morning to help Sam get out of bed. He will use a walker to start with.

Post-surgical day 1

Sam slept well until about 4:30 this morning when pain started to break through and vomiting started. Cleaned him up and settled him down with some drugs again and he slept until about 8. He is not interested in food this morning. About 9 we tried to start some Tylenol as he also had a mild fever and some apple juice with miralax. That didn't stay down. he asked for a Popsicle about an hour later and ate half of it. We just saw the neurosurgery nurse practitioner as the neurosurgeon is in surgery today. he will stop by later today. Over all she says Sam is doing great, just what they would expect. By their accounting he is on post surgical day 1 and will likely be here until Sunday (day 4) or Monday (day 5). We are to remain on clear liquids for a while. She wants to try and get him out of bed tonight or tomorrow. Given his existing gait problems from the femur fractures, PT is going to come by tomorrow and get a walker for him to use. Dizziness is common after chiari surgery. His incision looks good a little swollen but no sign of CSF (cerebral spinal fluid) leaking. If the vomiting and fever continues for another day or two a steroid will be used to help the swelling around the nervous system. It comes with other side effects and they want to make sure it is not just normal post anesthesia vomiting and ickyness before steroids are given.

Evening Update....

Ok I'm not sure what happened there. I tried texting a few updates and they cam through as gibberish. One was around 3 about how sam enjoyed a red popsicle and I can't believe how relieved I am feeling now that surgery is over and He is doing so well. I pray that he continues to do so. the second was how i liked the way nursing is keeping on top of the pain. Whenever his heart rate of blood pressure goes up they are giving him something for pain or valium. The nurse has been able to use the lowest doses of medications and the only time he was really uncomfortable, in extream pain, was right after surgery in PACU.

Sam has been restless this afternoon. His hair was cleaned with something prior to surgery and it was left all matted on the back and sides of his head. It really bothered him and he kept picking at it. He would also mess with his incision. We got some K'nex and I made a car to keep him busy and give his hands something to fiddle with other than his hair.

Along with the bordom and restlessness was hunger. We started with popsicles, then had pudding, then icream, for dinner there was broth, orange jello, apple juice and more ice cream. after all that he was still insisting on a hotdog. We finally gave him one about 6:30. After dinner the nurse gave him something for nausea. now at 8, it is so far so good. Nothing has come back up.

Sam's face is starting to swell some. The nurse tells me it is the body's response to trauma. over all though the nurse said he is on the way to becoming the best chiari patient she has ever had. Dr. Healy, Sam's orthopaedist even stopped by to say hi today. Sam thinks he is the boss of all the doctors.

I can't believe it but I am missing my other kids. It is quiet here. My relief is giving way to exhaustion.

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we are in PICU....

Doctor feels that surgery went well and he was able to do everything he set out to do. It was a little shorter than the 3 hours. he took out a silver dollar size piece of skull and some of the first vertabrae. Opened the dura and put in a patch made from bovine tendon. it was almost an hour before they came to take us to see him in PACU. Sam had a massive headache when he came around. they gave him some morphine, valium and toradol. Then got dad and I. Sam woke a bit after we got to him and was still in pain so they gave him a bit more morphine. He fell back to sleep for a bit. when he woke up the next time he asked why his head doesn't hurt! this all happened in the PACU (post anesthia care unit). We are now settled in the PICU for the first night. he complained about the cathedar so that has been removed. he has also asked for toys. That is why he wanted to come to the hospital in the first place! He is also enjoying the cable tv. We don't have cable at home so this is a treat. he has a PICU doctor assigned to his care and the doctor is very pleased to see how much he is moving around. Said he is looking very good right now.

Surgery is going on....

I got up about 4:30, suprisingly I wasn't awake watching the time. The alarm actually woke me up. We got to the hospital ok and through all thier stuff.Sam seemed ok with everything. He wanted to watch a movie and picked out Monsters, Inc but that proved to be to much scary stuff. So we switched to a marvel super hero one and drifted off to sleep with me holding the portable DVD player up so he can see it iver the mask. He didn't like the smell of the gas and got a little upset at that. It was about 8:25 when I came out of the OR. We are now settled into the PICU and waiting word. Richard got the other kids off to school and I assume that went ok. He should be up here shortly.

Just a few hours now.....

Well we leave at 5:45am for sam's surgery. He has cleared the pre op physical with our PCP and then the nuerologist checked him again today. he's good to go. I need to go put the clean sheets on the bed and pack a few more things. I think I have gotten to a place of no feeling, mabey it is better described as a calmness. it helped that it was a beautiful sun shiney day out today and I was busy getting everything in place. Sam is so excited it is here. He has been talking to people at school telling everything that is going to be done. He will have one more big headache then it will get better. Please pray that all goes well with the surgery, and he his healing goes smoothly. About 1 in 4 get aseptic menigitis following this surery. Pray that all goes well on the home front.

3 Days...

Well it's almost midnight so I could say 2. This morning at church was so good. I was so disappointed to not be able to go to the woman's retreat this year. By the time I left church I felt so loved and supported by my church family. Even a lady I don't really know stopped to say she was praying for us. It was good that I was there. Plus I found Sam's iXL in the van that gave us a ride home Easter Sunday, or I should say Rose did! Sam is doing pretty good with it all. We went to a couple of parks today and Sam had to take a break and lay downfor a bit because of a headache.

So they start....

I was wondering the other day why I didn't have any dreams about the surgery yet. Well they started this morning. It included such things as being at the wrong place, walking to the hospital and being late, two kids scheduled for surgery at the same time and I was focussing on the other child who had eaten something but was saying no and forgot to make sure Sam didn't eat. 4 days.

Finally......

Joshua 1:9 (King James Version)
9Have not I commanded thee? Be strong and of a good courage; be not afraid, neither be thou dismayed: for the LORD thy God is with thee whithersoever thou goest.

Proverbs 3:5-6 (King James Version)
5Trust in the LORD with all thine heart; and lean not unto thine own understanding.
6In all thy ways acknowledge him, and he shall direct thy paths.

Psalm 30:11-12 (King James Version)
11Thou hast turned for me my mourning into dancing: thou hast put off my sackcloth, and girded me with gladness;
12To the end that my glory may sing praise to thee, and not be silent. O LORD my God, I will give thanks unto thee for ever.

Philippians 4:6-7 (King James Version)
6Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God.
7And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.

Blogger is down so I’m putting this into Word and will cut and paste later. This morning I went to facebook and the first three verses show up in my feed. Three different people put these verses in their status and they all came together for me. I’m not sure how I see dancing about Sam’s surgery, but be not afraid I will not be alone. God will take away my mourning. Last night at church I went forward for prayer for the surgery and my coping of it. I’m not alone. Wednesday was a quiet day while the older ones were at school and I started to freak some being mostly alone with my thoughts. I’m not alone came through again and again with the men I prayed with. One of them shared Phil 4:6-7. That verse jumped out at me a few months ago while I was waiting for results of biopsies. God understands, I don’t need to. Even if doctors don’t figure out exactly what is going on with Sam, God understands.

There are times I am so afraid that this is starting Sam down a road of repeated brain surgeries. Then I tell myself he has done remarkably well with surgeries in the past year. He has had pleanty of practice with 5 in the last year, and two sedated MRIs. This unkown is so hard. But isn’t that all of life?

Sam is doing well. He was a little more tired today and had a headache again this afternoon. He was strapped into his carseat when he told us and I was grateful we made it to our destination without it escalating to severly. He also had his last therepy before surgery. We are to play it by ear, mabey check in after surgery, definitely after we see Dr Healy next month. I pray he stays healthy until Wednesday so we do not have to delay the surgery. He is loving his calendar and so careful to keep it up. He crosses of a day each night and each morning he tears off a chain.

Ok this was written 5/12 and finally I could get in and post 5/13.

7 days....

Sam remains excited about surgery and continually asks when we can go to the hospital. As soon as I can find the stapler, I'm going to make him a chain to help count down the days. I however am a bundle of nerves. Little things like running out of dish soap two days before payday, and a chance to get more, are bringing me to tears. Pre-Op called last night to go over things before surgery.

9 days....

First thing Sam asked when he came downstairs was how many days until his surgery! This was in an upbeat positive voice, not a dreading one. He then told my friend that the doctor was going to fix his brain so he didn't have headaches anymore, but he can't eat while there.

I had Sam's IEP/transition meeting this morning with the staff from the preschool he is at now and the elementary school he will be at next year. I feel we have a good plan in place and flexibility worked in to meet the needs that could come up. As his preschool teacher said, sam's status can change overnight. By fall I need to get a good idea of his lesions and risk of fracture.

Perect Peace.....

³Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee. (Isaiah 26:3, King James Version)

Today I told the kids about the coming surgery. 10 days away. They have haeard to many bits and pieces of things so I just said it all. I feel relieved to have it out in the open with them. I think Sam is ready to go tomorrow! He doesn't seem to remember the pain and discomfort of previous stays. He was talking about the food that comes whenever you need it and the toys though! He got a little subdued when I said he would have an iv when he wakes up afer surgery. He just doesn't have a clue how tough this will be. A seemed a little indifferent and was not interested in talking much. He was the first to leave the room. Z &E were more excited about getting to go to thier cousins that weekend. Though Z had more questions later.

I have a dear friend who has had her daughter go through brain surgery at 8 weeks for craniosynostosis. She prayed with me this morning about the upcoming surgery and one thing she mentioned is peace. Yesterday someone posted a video of Laura Story's song Perfect Peace on facebook. I think this needs to be my verse for this ordeal.

Planning...

Sam has had 5 surgeries and 2 MRI's under sedation at Gillette in the last year. the MRI's have been planned ahead of time but the surgeries have all been emergent in nature. this is the first surgery we have planned for. I got a big envelope stamped PREOP in the mail today. It is a folder/booklet titled "Planning for Your Surgery". It has things broken by down month before, two weeks before, day before and day of your surery. Even information about after surgery and staying at the hospital. They don't say if one can get wireless access to the internet. I know there are computers available for use throughout the hospital but now that we have a laptop I want to bring that.

Surgery Date

I finally have a date for surgery, May 18. We need to be there bright and early at 6:30 am. surgery is to start at 8 am and should last about 3 hours. Then Sam will be in house they call it, we say in the hospital, about 4 days. the first night will be in PICU.

I am really struggling with the stress of it all. Thinking about what he will go through, about what I want to/need to do before then (clean the house really well, make some button up pjs for him in fun fabrics), make arrangements for the other kids and on the list goes. I find my eating habits are deteriorating. The other times he has been in the hospital, my ulcerative colitis has flared up. I don't need that now.

I am thankful for support I am getting too. I have a friend, our girls are in the same 4th grade class, who works at Gillette and it is so comforting to be able to talk with someone who has seen this from the other side. At the same time she is a mom with a special needs kid and has the mom heart too. Sam's preschool, ECLC in 196, has been fantastic. I am so thankful that I have someplace to send him where he is loved, cared for, and stimulated each day. His teacher said today they will come visit him in the hospital. That will be so good for him and me! The ladies from my Tuesday night prayer group are great too.

Sam's headaches continue to increase too. They are coming two and three times a day. I really think it is beginning to wear him out. He is just not quite his usual smiley busy self. he is laying down a lot more and just a bit quieter. Last week at therapy the PT thought his limp was worse. I think it is too because of the strain of the headaches on his body. Not to mention chiari can cause leg pain too. I am also worried about his back. He is complaining of low back pain and the MRI noted FD on several vertebra from C3 on down.

This has been a tough weekend as far as headaches go. We had the big one on Friday then three on Saturday and one on Sunday. I am letting him lay as he needs so the headache does not escalate like Friday's did when he was pinned upright in his carseat. I am anxious to hear from the hospital about when surgery is.

He layed down and promptly fell asleep. :-( Now what do I do about shopping?

Wow! Sam said his head hurt as we left for Target. In the 5 min it took to drive there he was screaming in pain. When I parked and let him out of his seat,

Ok I did it....

Yesterday Sam left school in tears because his head hurt at the end of his school day. I made the call to get the surgery scheduled for his chiari decompression. Now I am waiting to hear from the nurse as to what to do next. this means I need to find someone to help watch the other kids while DH works. I am scared about what is to come. On other notes....I finally am on the way to getting the Zooper stroller wheels fixed. This goes to 55 lbs and should hold Sam for a while. He just hit 40 lbs. I found a stroller that would work to 110 lbs and can be used for bus transportation if needed. It is $700 plus almost $200 for the kit to use with a bus. That is going to be kept on the back burner for now. We will see how next winter goes.

Rambelings....

Over the weekend I posted this on Facebook, in a private group in response to someone else's post. "Then Wednesday at church the pastor was talking about how the resurrection should make a difference in a christianss life. A christian should be joyus. But how is my thought? I need to go back and think on that message some more. It did end with a cool illustration of the pastor pushing himself across the front on a skateboard, showing how many are trying to push thier way through life to God. Then he picked up a rope that had been laying on the floor the whole service and pulled a young adult to the front on a skateboard showing how we should let go and let God pull us through life, to HIm. I'm still trying to process it all. Sam, three other kids, life..." That is still on my mind. I spoke to the pastor briefly about it on Friday and he did remind me that joy and happiness are not the same thing. Ok I remember this and need to go back to my joy story in my notes on Facebook. That took place Dec 2009 to Jan 2010 when my mom died, I was diagnosed with ulcerative colitis, Sam broke his tibea, and a few other things that month. I had begun to bring my anxiety about this surgery for Sam down somewhat. Today I heard back from Dr Bielman that Surgery is the answer to Sam's headaches and mabey we should consider doing it sooner than waiting for the femur to heal. Now I feel my anxety going up again.

Nuerology.....

April 19 I took Sam to see the nuerologist for help with the headaches. We had not seen her since last May. A lot has happened since then. I took a few minutes to update her on what had happened and is happening then we dived into his headaches and talked about them for at least half an hour. she also examined him. had a hard time seeing the back of his eyes to see if the intercranial pressure was elevated. She came into the exam with the bias that the headaches were not from the chiari. but after taking Sam's history she feels it is. She then contacted the nuerosurgon to talk about Sam and the conseus is surgery will help the headaches. the nuerologist will not prescribe anything for the headaches and says to continue with the laing down and occasional iburofen/Tylenol for them. It is nice to have a second doctor validate the need for surgery. It is such a big surgery though. We have an appointment to see nurologist in mid may after the school is done with thier testing to discuss the developmental delay stuff we originally saw her for last year.

Decisisons.....

I find myself in a constand debate about when to have suregery for Little Guy. Offically we are waiting for his left femur to heal more before taking the hardware out and having the chiari decompression surgery. this will give him one trip to the OR. Will it be to much for Little Guy? Should we do the right leg and decompression now? The left leg with the flexible nails will be an easy surgery, should we do that later? Will it be to late in the summer and recovery time run into school? I keep remembering the scene from Star Trek IV when bones rants about the primitive methods of dealing with brain injury. I almost wish that something would happen that would take the limbo out of this decision and make surgery a necissity. Like finding a syringomyelia would have made surgery needed. Little Guy goes acouple of days with out a headache and I think mabey we don't need it afer all and then Wham! a whopper of a headache takes him out. This limbo period of indecision sucks.

I finally got answers....

It seems like about two weeks I have been rying to get hold of the endocronoligist's nurse, or the person that I think is his secratary. I have left message after message after message for both these people. I had decided Monday I was going to start calling others in the hospital for help. Dr Healy's nurse has always called back very timely and been very helpful. I had wanted to know what to do about the lab tests that were not run, do I need to get the growth charts from Little Guy's primary care doctor, when will this DEXA scan be scheduled and if we could get the first pamidronate treatment done beofre Kindergarten starts. Well after talking to Dr Healy last week, I found out that the pamidroate needs to be done several weeks before or afer surgery so that will kind of out this summer. We next see Dr Healy mid-June so I don't think surgery would be scheduled before July. This surgery is chiari decompresion and removal of the hardware in Sam's legs. That left the other three questions I had. So I will get a lab slip in the mail about two weeks before the appointment in September with the endocronoligist to get that done. They have growth charts already. Though I think I will print off his growth records fro the My Chart at his PCP and bring with me to the appointment just to make sure. The DEXA scan will be done the day of that appointment too. It was the person I think is the secratary that called and she started the conversation off by saying something about phone tag. I have never recieved one message back all this time!!!! I always left my cell phone number and couldn't have mixed up the numbers that many times. AARRRGGGHHH!! That experience has NOT been my typical experience with Gillette. On other news, I scheduled an appointment with the nurologist for the 16th to see if we can get help with the headaches until the surgery. Yesterday Little Guy was plaing with daddy, he would run to daddy and daddy would step out of the way at the last minute, scoop him up, hold him upside down over his sholder and tickle his tummy. Little Guy loved it, laughed so hard and asked for more, but after a few times he went to the couch to lay down sying his head hurt. :( He would lay down for a couple minutes then jump up asking for more. This happened a few times until I pointed out to Daddy what was happening and Daddy stopped the game.