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.

History January 2011 - March 2011

We went back beginning of January 2011 for a check on his leg and to find out what the biopsies said. His leg was healing well. biopsies were still differing. Dr Healy was as frustrated as I was about the ambiguity of diagnosis. Little Guy was referred to Dr. at the U of MN who is the bone tumor specialist there. later in January we found our way to Minneapolis and met with the Dr. In the office he took lots of information, history and such and examined Sam. He told me that he wanted to bring Sam's case to a multidisciplinary team for input before he told me what he thought. I would get a call in a week. the two leading diagnosis were Chronic Recurring Multifocal osteomylistis, CRMO and fibrous dysplasia, FD. FD has a life long implication and CRMO is usally grown out of by adulthood. Dr told me that the least likely was FD because Sam's lesions were not in the usual places for FD, he has no lesions in the ribs for example, and the lesions were on both sides of his body. FD is usually only on one. A week later Dr called and said that he felt it was a FD type of disease, although not typical. Dr recommended treatment with pamidronate, a biphosphnate drug. this class of drug is used for osteoporosis. this is given by IV over three days every three months. It would help slow down the natural breaking down of bone. Our bones are continually being remodeled, being built up and torn down. this drug will slow down the tear down process. In February we went back to Dr Healy with the info. Orthopaedics does not administer the drug so we were referred to endocrinology. There is a huge wait to get get into Dr Sheridan, first appointment was given for the end of march. About an hour after that I was called back and told that appoint was not available, could we come in tomorrow, March 2. Meanwhile Sam's headaches had stepped up a lot. He was getting headaches daily now. these would take him out. He would lay on the couch and not want to do anything. Some brought him to tears they were so bad. We saw the endo and that was mostly a information gathering session for the Dr. He took a detailed history. I am always amazed at how the details are always changing in these when I get the transcripts after the appointments. Ordered three pages of lab work and a bone age x-ray. Sam was spinning on the stool that is in every exam room. This brought on a headache. I also asked for lidocane cream before doing the blood draw. I had to get a wagon to bring Sam down to the lab with as his headache was taking him down. He had 11 vials of blood drawn and had to pee in a cup for the first time. The xray was hard to get because Sam had a hard time sitting up and keeping his head up because of the headache. We got it all done and the lidocane dream was wonderful!!! About a week after that Was Sam's MRI to follow up on his chiari with the neurosurgeon. the MRI went well. Basically there has not been much change, but NSG feels that chairi decompression surgery would help the headaches. we could do it any time and he would be willing to do it at the same time as the hardware removal. When I finally got the transcript and lab notes form the endo visit I found out 5 of the blood tests were not run and the Dr wants to add a DEXA scan (bone density). I am still trying to get hold of someone to find out about this. Of the test run only two things came back out of line. his growth hormone was borderline low. We will watch his height velocity for now. I wonder if that can vary depending on growth spurts? Something else, osteoclasts?, came back that suggests he has a slightly higher than usual bone turnover. The hardest part is waiting to figure this all out.

Dr visit with Ortho

On friday April 1, we met with the ortho. Let's see what was discussed....Left femur fracture is healing, slowly, but healing. We should be able to take the pins, and plate on the right, out in June or July. left tibea was x-rayed the new lesion there is easy to be seen by me now. It is on the inside of the bone and does not involve the cortex so does not cause much of a fracture risk. right clavicle. Sam hurt this two weeks prior in school while crawling for an obstacle coarse. He would not use his arm that day. I took him in to urgent care and had it x-rayed that day and was told it is not broken. the next day Sam woke in lots of pain and could not use his arm to steady himself for walking. I didn't send him to school. A week later I noticed the site near where the clavicle meets the sternum was swollen. I brought it up to Dr Healy and it was xrayed. No lesion there but Dr feels it was broken through the growth plate. it has a certain name that I can't remember now. the only way to know for sure would be a CT scan but since the fracture is displaced outward as opposed to inward (causing problems with bbreathing and eating) nothing is done with it. Dr Healy is ok with doing the hardware removeal surgery at the same time as the decompression. though the surgery needs to be far enough removed from the pamidronate therepy so I will not push to get that done before Kindergarten starts. since the surgery will not be until summer I want to set up an appt with nurology to see about meds to help stop the headaches.