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10-21-09 Jason went back today for a check back on the tendon transfer and to get his casts changed. This one is bright green. He is styling and can't wait until he gets his next set of foot braces. He may not have to wear the one on his left foot after a few months.
9-14-09 Jason had his tendon transfer and a series of muscle releases done on the toes of his left foot. I never realized how long his toes were.
8-17-09 Jason had another extension of the rods in his back. He also had 3 muscle releases done on his left foot. He is going to have serial casting to straighten out the foot, and then he will have a tendon transfer sometime in the next month.
7-23-09 Jason got a therabite to try to expand the opening of his jaw. He will use it 5 times a day. Here is a picture of him trying it out in the doctor's office: http://viewmorepics.myspace.com/index.cfm?fuseaction=viewImage&friendID=456675709&albumID=733366&imageID=12437253
2-5-09 Jason had yet another expansion on his back. He grew about 1cm and the doctors are talking about working on his one foot in about 3 months.
8-1-08 Jason had another expansion today. He grew maybe 1/4 to 1/2 of an inch. He is resting somewhat uncomfortably, but doing well.
7-7 Jason had a feeding evaluation today. They won't even try to take him off of the G-tube until after he has surgery to make his mouth open more. That probably won't happen for at least another year yet. The interesting thing we learned was that his jaw does not do a side to side motion when he chews. Apparently, it is normal to do that when chewing food in the back of your mouth. Jason uses his tongue to move the food so that it gets chewed. We expect a full report in about a month.
2-28 Jason had an expansion today. He is doing fine and is resting comfortably.
11-5 Jason had surgery again today. The docs had to swap out the remaining rod in his back with a new construct. Because of the problems he has had recently with staph infections due to a pressure sore around the clip where his VEPTR was, they decided to go with a set that went more along his spine. This construct will go under the layer of muscle in his back. This should stop the pressure sores. Jason is pretty sore right now as he had two partial fusions, one on his upper spine, and one on the lower. He is going to have to wear a back brace for several months. He is doing well though.
8-30 Jason is having surgery to have yet another expansion done on his back. The doctors were looking seriously at doing a tendon transfer on the one foot that is so bad. They drew directions as to what they will do to his foot right on the sheet of the operating gurney. They didn't end up doing it as they were behind. They also have to do whatever needs doing as people come into the ER. Next up will be a swap out in March sometime. They will end up doing his foot next summer so he has some time to recuperate before he has to go back to school.
7-4 Jason is in the hospital with yet another infection in his back along where the VEPTR clip is. It could be that a pressure sore is starting. Jason is so thin that it's quite possible.
5-26 Jason went to the hospital with another infection and will be on IV antibiotics all week. This sucks because his birthday is on the 27th.
1-4 Jason had surgery today to remove one of the rods in his back due to a staph infection. He will be in a back brace now until the reinstall the rods sometime in August.
10-09 Jason finally got to start first grade. He was released back to school by his doctor. He is even going to get to take part in PE this year.
8-22 Jason got his new fire engine red wheel chair before he was released from the hospital today. Now we need to get him a horn and a pennant or a whirlygig or something to put on his chair so folks can see him.
8-21 Jason got another expansion on his rib today. Everything went well and he is doing fine.
8-9 Jason's preop was today. He is going to have an expansion on his VEPTR's on the 21st. He may also have a tendon transfer on his left foot if they don't have to do an emergency surgery from the ER.
6-21 Today was Jason's last day of Kindergarten. He is going to be going into the first grade. He still has summer school to get through and yet another surgery due in August.
2-2 Jason had another expansion today. He is doing so well they sent him home the same day. That is the first time this has happened.
9-19 Today is Jason's first day of kindergarten. He started a couple of weeks late due to recovery time from his surgery. He seems to like it pretty well.
8-31 Jason has gone in for another extention on his back today. He is doing well, and he grew another inch and a half!
04-04 Jason is back at school starting today. He is still a bit sore from the implants in his hip, but he is doing really well.
2-19 Jason came home from the hospital today. Sore, but doing well. He got out of ICU 2 days ahead of schedule. He is still quite stiff, but this too shall pass.
2-14 Jason had a VEPTR expansion and another implantation today. His curve has been reduced to 35 degrees. He hasnt had this small of a curve since he was about 6 months old. His kyphosis (hump) appears to be totally gone. And, to top it all off, they did it all thorascopically, so he just has a few small incisions.
12-08 Jason went for a check back today and a bunch of tests. He is going to probably have surgery sometime in January. We wont have a date for a few days yet. Jason is not only going to get an expansion, he is going to get a second VEPTR implant. This is going to go on the curve further up. It may also take some of the pressure off of the larger implant that he has.
9-13 Jason had surgery to reposition his VEPTR today. The upper clip had migrated through the bone. He did really well today.
07-06 Jason's G-tube fell out in the night and we ended up having to go and have surgery to put it back in because the opening had closed.
05-24 Jason had his first expansion of his rib today. He is up and doing fairly well. He grew so much that his back went up to a 70 degree curve. The doctors straightened him up to a 40 degree curve. That is a five degree improvement over all.
03-13 Jason is out of the hospital. He has a antibiotics and a cap to populate the right type of bacteria in his tummy. Those antibiotics must be pretty powerful. He will be starting back to school on Monday the 22nd.
03-10 Jason is back at the hospital with pneumonia.
03-03 Jason has started back to school today and he is doing great! He was so excited to be going back.
01-18 Jason got to go home today. He is kind of wobbly, but that is more due to having your center of gravity change. He isnt even casted.
01-12 Jason had his titanium rib installed this morning. His surgery went really well. He looks as if he grew about 3-4 inches. He went from about a 115-120 degree curve to a 40-45 degree curve. The doctors say they will straighten him out more in about 4 months when they do his first extension surgery. Before and after pictures are in his photo gallery
01-07 Jason had his pre op appointment for the titanium rib surgery today. He had lots of measurements taken and we go in on the 12th.
12-09 Jason went to ENT and Anesthesia clinics today. We still dont have word as to when his surgery is going to be. We do know that he is going to have his anesthesia done fiber optically.
10-08 Well, We finally went to the doc's yesterday for the results and etc for Jasons surgery. He does qualify for the titanium rib. Thing is, he is so tourqued that they might have to do a second surgery about three months after the first to install another set on the other side. There is a national waiting list for the titanium rib as well. (that was a surprise, its not like its a transplant) He should be getting this surgery around the end of November. Jason will still look a bit kinked as his torticollis probably wont be corrected with this particular surgery. He will also need to have a reinstallation as he gets bigger. He is not the youngest to get the rib, but he is one of the smallest. On the plus side, Jason has no lung impairment at all. The VQ was quite a surprise as Jason's curve is over 100 degrees now. The docs expect him to grow at least 3-4 inches once he has his surgery. He will be out of school for about 4-6 weeks. I have been told that his teacher and the school therapists will be visiting the house while he is recuperating.
05-23 Jason went to see his back doctor. Jason's back has slipped further so they are wanting to do a titanium rib prosthesis. The good thing about this surgery is that he wont have to be braced like he would if he has the rods put in his back. The bad thing about this is that his insurance might not pay for it as neither procedure is FDA approved. The surgeon for Jason's stomach dont want to redo his nissen until they find out how soon the other doctor wants to do his back. They are afraid that if they redo his nissen, the pressure from his stomach being the way it should be might cause it to undo again. If Jason has to wait for his back surgery, they will install a J tube instead. We shall see.
04-23 Jason had an upper GI today. The results showed that the nissen had slipped and was cutting off the top part of his stomach. He will be going in for surgery to redo the nissen sometime within the next 30 days. We are waiting to hear from his surgeon.
04-02 The doctors think Jason's nissen (its an operation that makes it so you dont throw up) has come undone. Every time he is put in his brace he starts to reflux. We are waiting for a referral to go through the surgery clinic. His regular doc is not sure they will re do it. I think they will as it is either nissen him or do surgery on his back. More info as we get it.
01-31 Jason had a swallow study today and he passed! This means we can work on buildng up how much he can eat and once we go a year without using his G-tube, we can get rid of it! This is great news!
10-04 Jason met his new doctor today. Her name is Dr Ochs. Dr Moinpour had a baby and is leaving the clinic to spend more time with her daughter. Jason isnt quite sure what to make of her yet.
9-20 Jason walked about 3 feet today. Time to party!
07-09 Jason has started swimming therapy. He enjoys it a lot. He is the only baby his age there that doesnt cry when he gets into the water. His terapists are also talking about horse back riding therapy as he developed a not quite a hernia on his side. They think it is because his back brace is pulling him how he should be without the curve and his body isnt used to that.
05-21 Jason stood up all on his own for the first time today. He held his stance for a good minute all the while making hey look at me sounds. He tried to do a happy dance, but he fell on his behind.
03-22 Jason's last day of daycare for a while was today. Boeing laid is dad off, so he couldnt be in the daycare anymore as it was for employees only. The folks at the center were all sad to see him go. We do have pics to scan of him at the center that will be posted soon.
02-26 Jason went into the hospital again today with some sort of bronchial thing. We hope its not related to the swallowing incident he had last week.
02-15 Jason got called back in to the hospital by his doctor. The doctor found "something" in his Xray. It turns out that the something was a juice pop top. Everything turned out o.k. Jason was not terribly happy to get it out. They had to crank his jaw open to be able to get in there with some forceps to get the poptop out.
02-14 Jason had a choking incident at school today. He somehow got a hold of some string cheese. He ended up getting a ride in an ambulance to Children's hospital and an Xray out of it.
02-04 Jason has been to see the orthopod and the pulmonary doc. Jason's scoliosis has progressed to 80 degrees. He does well in the brace, but if he progresses another 15 degrees, he has to have surgery. The doctors are talking about something called a titanium rib prosthesis. The good thing about it is that he wont have to wear a brace. The bad thing is that he would have to have surgery every 3-4 months. The pulmonary doc wants us to use flovent twice a day to try to get rid of some of the irritation from him aspirating. We shall see how that works.
11-20 Jason had his flu shot today. He was supposed to have the final adjustment on his back brace, but by the time he got to the orthotist, he was having and adverse reaction to his shot. He ended up getting to ride in a real ambulance witht he lights and siren going. He was admitted to Vally General and then he was transfered to Group Health Eastside hospital. He is going to ahve toxicology tests run on him to see what caused the reaction. I just hope he gets out of the hospital before thanksgiving.
10-23 Jason got his back brace today. He doesnt like it at all. He is not used to having no bend in his back I think. He does grow 3-4 inches with it on. He is actually pretty tall. He is almost a yard tall and he isnt even 2 yet. Nex time he goes to the doctor we might be able to get an accurate height. I just hope he gets used to his brace soon.
10-12 Jason had his swallow study today. He can swallow!!! He is going to be allowed to eat puree'd food. His speech therapist said that what me might want to do is give him grown up food that we have whizzed through a blender. Baby food would be too bland. Jason isnt up to swallowing liquids yet, but when he does a repeat study in 6-8 months, he might be able to get rid of his g-tube soon. It takes a year of no tube feedings for them to want to take out the g-tube.
10-01 Jason continues to improve. He climbed into his activity table today. He was so proud of himself. He has also started to talk more with his mouth open. I think this bodes well for his swallow study on the 12th. He still hasnt gotten his back brace or his DAFO's for his feet. I think we might get them after the study. I do know his therapists want to have a home meeting. The problem with that is finding time to get off of work to have a meeting. They do expect him to pass at least part of the study, but they dont think he will be able to handle fluids.
08-31 Jason has had successive appiontments for the arthro clinic. His hadns are much better and if he spends the next 6 months in braces every night, he might be through with hand braces. He is going to be getting some feet braces to correct his stance. They will also bring out his toes. His back is going to be the most worriesome. He now has a sixty degree curve. He is going to be braced for his back and if it doesnt get better, he will have surgery. They could do a titanium rib prosthesis, or have a flexible rod put in his back. The thing about the rod is that he will have to be braced afterwards. If he gets the rib prosthesis, he wont. He would also ahve less surgery with the rib prosthesis. Dr Hall said that she thinks that Jason's arthro is more a connective tissue arthro as opposed to fibrous muscle. I gather that most arthrogryposis is more a fibrous muscle type. Jason is also couch surfing quite a bit. Things are definatly looking up!
07-31-01 Jason went to the pulmonary clinic because of the problems he has been having with his lungs when he gets sick. It turns out that he has something called restrictive chest wall disease. That means that the curve in his back is putting pressure on his ribcage making it harder for him to breathe. We expect that he will end up getting a clamshell brace for his back when we go to the arthrogryposis clinic at the end of August.
07-25-01 Jason went to the surgery clinic to review the barium study they did when he was last in the hospital. He doesnt have a hernia (good news) and his nissen hasnt come undone. So, we wait to see what happens when we go to the pulmonary clinic next week.
06-28-01 Jason went into the hospital again for his lungs. The doctors changed him from mom's milk to something called kinder cal. He is also going to go to a pulmonary doctor to see if his scoliosis isnt squishing things. He had a barium study to see if his nissen wasnt coming undone. His nissen is fine, but they think he might have some sort of a hernia
06-18-01 Jason went to the Cranial facial clinic for his jaw today. The doctors were amazed at how much his range of motion has improved. He can open his jaw 15mm. That is about half of the normal range. They still want to track him and he is going to have an MRI to make sure his jaw is growing at the same rate the rest of his head is. They also said that when Jason goes to the dentis he is going to have to go under general anesthesia because its the only way they are going to be able to get into his mouth. It was also suggested that he see a doctor for his lungs because of his scoliosis.
05-27-01 Jason turned one today. He had a little party. His sister and his Cousin Jeffrey were in attendance. Jason did a bit of a face plant in his cake. Pictures will be forthcoming soon!
05-09-01 Jason sat up for the first time today! He has been able to sit upright when placed that way, but he hasnt been able to pull himself into a sitting position. He goes from his side and crawls up into a sit.
04-27-01 Jason is in the hospital with the flu and aspiration again. He had a temp of 103. He should be fine and back home by monday.
03-22-01 Jason crawled for the first time today. He decided that he wanted his sisters dinner more than his own. He still isnt sitting yet, but I think that its because his back muscles are so weak.
03-15-01 Jason got new braces for his hands today. These ones he wears during the day to bring his thumbs out. He also has his top teeth coming through. You can feel the one tooth, but you can actually see the other one peeking out.
01-26-01 Jason had a swallow study today. His ability to swallow is improving. He has a good swallow. However, he still aspirates if the volume is too big, too thin, or too fast. We can let him still have tastes of stuff, but we are going to have to be very very careful how we do it and over the amount of time because he gets fatigued quickly.
01-15-01 Jason went to urgent care today. He has something called bronchialitis. Its sort of like bronchitis. He was given a nebulizer to help ease his breathing. He should be alright tho.
01-08-01 Jason's first teeth broke through on the bottom today. He also feels like he has a couple more coming in on the top as well. Jason bit the heck out of his daddy who was giving him peas at the time. We also go information from the University of Utah regarding the arthrogryposis study.
12-25 Jason's first christmas was today. He got some cool socks with noisy things in them and a foot piano to get him to use his feet more and two rain sticks one small and one large and a ball that he can wiggle across the floor to push and some other cool things.
11-29 Jason went to the arthrogyposis clinic today. We saw a lot of people. He got a wedge for sleeping on so we dont have to have him sleeping upright in the swing again. The physical therapist he saw today said that his scoliosis was getting better. We wont know how much better until the next arthro clinic. The therapists also recommended that he not sit in a high chair or walker because of how his back muscles pull. It would aggravate his scoliosis. Dr Hall the geneticist also saw him. She said that he definatly has a distal type of arthrogryposis, but its not one she has seen before. She also said that Mike also has it. She took pictures of both Mike and Jason. She also asked if the family would participate in a genome mapping study that is being done in Salt Lake. Once I get details all of you Dishers will be getting email from me to pass on. For those of you that know anything about genetics its autosomal dominate in gene 9 or so they think. She has also never seen a case that has improved so much in so short a time, so we are very fortunate.
11-22 Jason got his Mic-key button today, yes that is how it is spelled on the box. Its a little button with a flip top cap. There is a feeding tube that snaps and and locks into it for feeding him. We are now going to transition him back to bolus feeds and continuous drip feeds at night.
11-16 Jason started with his new therapist today. Her name is Jeanene and she has worked with other kids with arthrogryposis. She told me that she had club feet as a child. Jason was a naughty boy today. He pulled out his G-tube in the parking lot on the way to see Dr. Maletzky. They put a foley catheter in and he gets his button tube next Wednesday.
11-9 Jason got Bailey tests today. They monitor babies development and basic thought processes. He is doing good for his age group in the cognitive skills, but he is slow because of the arthrogryposis in his physical skills. We expected that, but the therapist who gave him the tests said that according to what she has in his file, they never expected him to be able to move his arms up. Boy did he fool them! That's my boy! He is also making fantastic improvments in straightening his legs and his jaw is moving a lot more than they expected him to in just a months time.
11-2 Jason got new hand splints today. Michelle his main PT/OT gave a little speech about Jason as a case study. Jason ended up with a few new girlfriends at the therapy office because the therapists had to fawn over him.
10-22 Jason rolled all they way over onto his tummy today. He gets really annoyed once he is on his tummy. Now all we have to do is get him to turn in the other direction he will be fine
10-19 I have uploaded some pictures from Jason's daycare. Unfortunatly, we can only put up pics of him as some of the parents might not like pics of their children on the web. He does have fun talking to the other babies tho. Jason got actual tastes of food today. His speach therapist calls it flavoring his saliva. He had sweet potatoes. He smiled once he got a taste, so I am guessing he likes them.
10-18 Jason had his new ot/pt come to school today. Her name is Carrie and she works for the Elks. They have a free program to provide children with physical and occupational therapy. I dont know if they do this outside of the state of Washington, but I think that is really going to be good for him because we cant be at school to give him his excersizes.
10-9 Jason had a follow up in the orthopedic clinic today. He has scoliosis and has a 45% curvature of his spine. He will get another x ray in a few months and if it gets worse, they will put him in a back splint. If that doesnt work, they will do an operation on his back once he stops growing.
10-5 Jason saw his new speech Therapist today. Her name is Gay Lloyd. She really surprised us because she is deaf. She is really good with him though. She is an expert on feeding issues and small children.
9-26 Jason cam home from the hospital today. He is on a kangaroo pump for a continuous milk feed drip. He is supposed to be on this for about a month before they will start to do the regular tube feeds. He will transition slowly to bolus feeds. He also has a new speech Therapist. I talk to her Monday to make an appointment for him. We are really interested to see what they are going to do for physical therapy for his jaw.
9-20 Jason had surgery for his G-tube today. It was a comedy of errors as far as getting him to the operating room. First his transport from Group Health took his car seat back there. Then it turns out he was supposed to be in clinic the day before, but apparently, no one notified Group Health. Then they ended up running a bunch of labs to delay his surgery even more. He was supposed to be in at 10:30 am. He didnt get into the room until 3pm. He got out at 6pm. They also did a fundoplication and a muscle biopsy.
9-13 Jason went into the hospital today with aspiration problems again. The doctors sent a suction unit to the house for when he comes home. He gets his G Tube on the 20th. More info as it comes!
9-12 Jason got his leg splints today.They are a hard white plastic. They are called AFO's. They look like little boots. He looks like all that he needs is a breastplate and a helm for full suit of armor when he has all of his splints on.
9-5 Jason started daycare today at the Boeing New beginnings daycare by Mike's work. He did really well sleeping most of the day when he wasnt flirting with his teacher, Ms Lorena. He has 5 other children in his class.
8-30 Jason went to the arthrogryposis clinic today. He has distal arthrogryposis. We saw Dr Hanel who is an upper extremity orthopedist. He felt confident that Jason would have full use of his hands. Jason saw Dr Hays, who is a physiatrist. A physiatrist is a rehabilitative doctor. He has diagnosed scoliosis and he thinks that Mike may have had this as a child also. He is referring us to Dr Hill in the November clinic. She should also be able to tell us more of what to do for his jaw.
8-25 Jason went to the hospital with what the doctors are calling aspirative pneumonia. He is doing well and we hope to have him home soon.
8-17 Jason got splints for his hands today, he also got fitted for braces for his feet that he will wear at night. I will upload them as soon as we get the pictures back. He is also going to go to the arthrogryposis clinic at children's hospital here in Seattle.
8-7 The latest update is that Jason doesn't have a fused jaw after all. He has something called arthrogryposis. He has a workup at Children's Hospital with the ortho clinic. We will learn more how they are going to treat him.
Jason was born with a fused jaw and some orthopedic problems, so he has been visiting the hospital a lot. He is a big hit with all the nurses and doctors that he visits with. He has been home for a month now, and is doing well. His big sister, Alex, thinks he is the bees knees.
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