Guest guest Posted January 22, 2002 Report Share Posted January 22, 2002 Alison, What troopers you and are! Great news that he is doing so well developmentally and you are seeing progress with the commando crawling, etc! They get so fast at it too! You sound like a great Mom with all you've had put on your shoulders- Tyler is in great hands and we wish you the very best with his continuing progress! ' Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2002 Report Share Posted January 22, 2002 Hi everyone, it has been a couple of weeks since i have posted. My computer had crashed and my modem wasnt working and it has been a long couple of weeks with no contact. I happen to be very lucky to have a good friend who just got a brand new computer and they gave us their old one. So, here i am!! The best part is that we now got a cable DSL line and everything is so fast and i am so excited. Anyway enough about all that. I hope all is well with you and all your families. It has been a long haul since i last posted. We have been in the hospital 2 times for Video EEG's. we think tyler may be having seizures and they have been monitoring. It just so happens that the times we were there, we hav'nt seen any staring spells or head bob episodes. We are due to have an MRI next week so that will help us out hopefully. We saw our pediatrician today and he is very concerned because Tyler's head has not grown in over 3 months. The helmet has worked to help round out the back plate in tyler's skull but because he also has craniosynostosis, the sutures are closed and his head cant grow. The clinician estimated to see about a 60% correction in 4 months or so and he told us last week that we are looking at after 3 months of therapy only 15%. And guess what !!! Tyler takes it off all by himself and wont leavi it on for a min. We got a chinstrap put on on friday and it has not come off yet. The clinician said once he learns to take it off there is nothing else to keep it on. So tomorrow we see the Neuro-surgeon. Our ped said they were in touch and both concerned about the non-growing head. We are possibly going to discuss the surgery after all but at least we tried other alternatives. He had surgery on his left kidney when he was 5 months old and we just had a checkup and now 6 months later it is finally beginning to get better. Slowly but surely we are making it. The geneticist called and left us a message yesterday that his chromosome 15 came up negative for Angelman's syndrome. That is another relief but we were told we have a lot more blood tests to go. We are seeing a cardiologist for the 1st time next week to see if they can help us with tyler's Acrocyanosis. His feet and hands are always blue and frozen. i notice it more so on his feet whaen he is in the sitting position. And yes i forgot to mention that he has learned to sit up also and even trys to commando crawl. All of the therapists are so happy as they did not expest it to happen so early. He is definitly making progress. Last week we had x-rays done of his legs, knees and ankles. we are getting fitted for SMO braces next week. He was born with a very mild case of club feet but when he weight bears its on inverted feet. Tyler's OT just got here so i have to get going. we still have PT and ST this afternoon and the social worker was already here. Every tues and thurs we have this. Today was the 1st day for my other son to start his daycare/pre-k program. He is only 3, so we have to pay fot it right now but we are looking to get him into the magnet program for september. we can only afford 3 days a week right now, but its better then him being dragged to the Dr.'s 4 times a week and witnessing the therapy 8 times a week. Tyler screams the entire hour of PT. (pain & torture!!) Well thank you all for listening and sorry this is so extremely long. Alison mommy to Rion Leander 11/5/98 & *Tyler Phoenix 2/21/01 *my special baby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2002 Report Share Posted January 23, 2002 Alison: Your ears must've been ringing, I was just thinking about you over the weekend wondering how Tyler has been doing! So happy to hear from you. I'd love to get that fast cable internet connection Sounds like you have good news & bad news with Tyler. So sorry his head hasn't grown, now you have to think about that dreaded surgery. Congratulations on his sitting up!! That's terrific. He's trying to crawl too? Geez! With the zillion tests he's already been thru as well as kidney surgery, he's a remarkably strong little guy. Thanks you so much for the update. I SO admire how strong you are. How's Rion been doing? I can only imagine how difficult it has been for everyone in your family. Best of luck at the neurosurgeon Weds.. Be sure you let us know how it goes. HUGS Debbie Abby's mom DOCgrad MI > Hi everyone, it has been a couple of weeks since i have posted. My > computer had crashed and my modem wasnt working and it has been a > long couple of weeks with no contact. I happen to be very lucky to > have a good friend who just got a brand new computer and they gave us > their old one. So, here i am!! The best part is that we now got a > cable DSL line and everything is so fast and i am so excited. Anyway > enough about all that. > > I hope all is well with you and all your families. It has been a > long haul since i last posted. We have been in the hospital 2 times > for Video EEG's. we think tyler may be having seizures and they have > been monitoring. It just so happens that the times we were there, we > hav'nt seen any staring spells or head bob episodes. We are due to > have an MRI next week so that will help us out hopefully. > > We saw our pediatrician today and he is very concerned because > Tyler's head has not grown in over 3 months. The helmet has worked to > help round out the back plate in tyler's skull but because he also > has craniosynostosis, the sutures are closed and his head cant grow. > The clinician estimated to see about a 60% correction in 4 months or > so and he told us last week that we are looking at after 3 months of > therapy only 15%. And guess what !!! Tyler takes it off all by > himself and wont leavi it on for a min. We got a chinstrap put on on > friday and it has not come off yet. The clinician said once he learns > to take it off there is nothing else to keep it on. > > So tomorrow we see the Neuro-surgeon. Our ped said they were in > touch and both concerned about the non-growing head. We are possibly > going to discuss the surgery after all but at least we tried other > alternatives. He had surgery on his left kidney when he was 5 months > old and we just had a checkup and now 6 months later it is finally > beginning to get better. Slowly but surely we are making it. The > geneticist called and left us a message yesterday that his chromosome > 15 came up negative for Angelman's syndrome. That is another relief > but we were told we have a lot more blood tests to go. > > We are seeing a cardiologist for the 1st time next week to see if > they can help us with tyler's Acrocyanosis. His feet and hands are > always blue and frozen. i notice it more so on his feet whaen he is > in the sitting position. And yes i forgot to mention that he has > learned to sit up also and even trys to commando crawl. All of the > therapists are so happy as they did not expest it to happen so early. > He is definitly making progress. Last week we had x-rays done of his > legs, knees and ankles. we are getting fitted for SMO braces next > week. He was born with a very mild case of club feet but when he > weight bears its on inverted feet. > > Tyler's OT just got here so i have to get going. we still have PT > and ST this afternoon and the social worker was already here. Every > tues and thurs we have this. Today was the 1st day for my other son > to start his daycare/pre-k program. He is only 3, so we have to pay > fot it right now but we are looking to get him into the magnet > program for september. we can only afford 3 days a week right now, > but its better then him being dragged to the Dr.'s 4 times a week and > witnessing the therapy 8 times a week. Tyler screams the entire hour > of PT. (pain & torture!!) > > Well thank you all for listening and sorry this is so extremely long. > > Alison > mommy to Rion Leander 11/5/98 > & *Tyler Phoenix 2/21/01 > *my special baby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2002 Report Share Posted January 23, 2002 Hi Alison! It's so good to hear from you again, I was wondering how you all were doing. I'm so sorry to hear that Tyler's head has not grown and that you are potentially facing surgery for his cranio. I hope that the MRI next week gives you some answers that you need as to why he's having seizures. I am so thrilled that he is sitting up now and trying to crawl! Kids are amazing! My younger brother was born with a severe case of club feet, and had numerous surgeries to correct them. He was so bad that the doctors thought that once he was a little bit older, that they would have to break both of his legs and reset them to hopefully have his feet point forward, luckily they never had to go that route. He was in casts and braces for years, I can remember him going to first grade with the braces on his legs. The doctors told my mom that he would be an obese child because he wouldn't be able to walk properly, he would never be able to ride a bike, there would be a lot of things that he couldn't do. Right then and there, my mom decided not to tell my brother these things. She felt that if she told him that there were limits to what he could achieve, he would feel defeated. My point is, Tyler probably doesn't know what a rough year he has had, and that's why he is amazing all of us by trying to crawl and by sitting up. Beleive in him that he can do this, that he can overcome these challenges, and don't be surprised when he does overcome a lot of these obstacles. My brother did learn to ride a bike, at the age of 4 and he's still riding and doing all those tricks on them. My brother won many races, was a soccer player, and is far from obese. I know this may sound stupid, but as a teenager one of his jobs was as a busboy, and I thought that was wonderful. That job required that he was constantly on his feet, and he did an awesome job! All the waitresses requested that he be in their station (I know this because I waited tables there). My brother probably has no idea, but he is a hero to me. To watch him as a struggling baby who could not get around because his casts weighed him down to grow into this wonderful man has amazed me. And I have a sneaky suspicion that Rion will look at his younger brother too with the same adoration that I do to my little brother. I'm sorry that this has gotten so long, its just when you mentioned club foot I felt like I really needed to share this story with you. Please know Alison, that you and your family are in my thoughts and in my prayers. Niki Kaylie & Danny (STAR grads) Phila., PA > Hi everyone, it has been a couple of weeks since i have posted. My > computer had crashed and my modem wasnt working and it has been a > long couple of weeks with no contact. I happen to be very lucky to > have a good friend who just got a brand new computer and they gave us > their old one. So, here i am!! The best part is that we now got a > cable DSL line and everything is so fast and i am so excited. Anyway > enough about all that. > > I hope all is well with you and all your families. It has been a > long haul since i last posted. We have been in the hospital 2 times > for Video EEG's. we think tyler may be having seizures and they have > been monitoring. It just so happens that the times we were there, we > hav'nt seen any staring spells or head bob episodes. We are due to > have an MRI next week so that will help us out hopefully. > > We saw our pediatrician today and he is very concerned because > Tyler's head has not grown in over 3 months. The helmet has worked to > help round out the back plate in tyler's skull but because he also > has craniosynostosis, the sutures are closed and his head cant grow. > The clinician estimated to see about a 60% correction in 4 months or > so and he told us last week that we are looking at after 3 months of > therapy only 15%. And guess what !!! Tyler takes it off all by > himself and wont leavi it on for a min. We got a chinstrap put on on > friday and it has not come off yet. The clinician said once he learns > to take it off there is nothing else to keep it on. > > So tomorrow we see the Neuro-surgeon. Our ped said they were in > touch and both concerned about the non-growing head. We are possibly > going to discuss the surgery after all but at least we tried other > alternatives. He had surgery on his left kidney when he was 5 months > old and we just had a checkup and now 6 months later it is finally > beginning to get better. Slowly but surely we are making it. The > geneticist called and left us a message yesterday that his chromosome > 15 came up negative for Angelman's syndrome. That is another relief > but we were told we have a lot more blood tests to go. > > We are seeing a cardiologist for the 1st time next week to see if > they can help us with tyler's Acrocyanosis. His feet and hands are > always blue and frozen. i notice it more so on his feet whaen he is > in the sitting position. And yes i forgot to mention that he has > learned to sit up also and even trys to commando crawl. All of the > therapists are so happy as they did not expest it to happen so early. > He is definitly making progress. Last week we had x-rays done of his > legs, knees and ankles. we are getting fitted for SMO braces next > week. He was born with a very mild case of club feet but when he > weight bears its on inverted feet. > > Tyler's OT just got here so i have to get going. we still have PT > and ST this afternoon and the social worker was already here. Every > tues and thurs we have this. Today was the 1st day for my other son > to start his daycare/pre-k program. He is only 3, so we have to pay > fot it right now but we are looking to get him into the magnet > program for september. we can only afford 3 days a week right now, > but its better then him being dragged to the Dr.'s 4 times a week and > witnessing the therapy 8 times a week. Tyler screams the entire hour > of PT. (pain & torture!!) > > Well thank you all for listening and sorry this is so extremely long. > > Alison > mommy to Rion Leander 11/5/98 > & *Tyler Phoenix 2/21/01 > *my special baby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2002 Report Share Posted January 23, 2002 Alison, Just by chance yesterday, I happened to be reading the Reader's Digest about a young couple whose child was throwing his hands in the air repeatedly, and it just didn't feel right to the Mom. The ped dismissed it as normal. They actually had to videotape the episodes to show the Doc what they were talking about, and she still dismissed it. The mother burst into tears and demanded to see a neurologist that day. They had tests done and the baby was dx with having infantile spasms. The mother wrote the story to tell other parents that they should always go with their gut instinct and scream and yell at these Docs if they ignore your concerns. The child received medication for the spasms and is doing very well today, pulling up, standing, etc.- all things that the Docs said wouldn't happen either. Without that medicine, the child could have suffered brain damage. I am sharing this with you so that you can be aware of this condition, and if it is what Tyler is doing, talk with the neuro about infantile spasms and the medication for it. If you want, I will go home for lunch and find the name of the meds for you if necessary! Good luck to you all and you are in my prayers as well! ' Mom Quote Link to comment Share on other sites More sharing options...
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