Ryder's sick....again:( I think we caught it early enough this time though. It seems like this illness is running the same course as the one about 3 weeks ago. He's been cranky, not sleeping at night, coughing, not wanting to eat and vomiting (even his tube feedings). At least I'm home and able to snuggle with him for the next month since I'm on break from school:) I brought him to the ortho to get moldings for his first pair of SMO's (braces for legs/ankles). He never regained his walking skills fully since his last illness, but today he was only taking a few steps before falling over :( It breaks my heart watching him struggle. He wants to eat and he wants to run around with his brothers. He has another barium swallow test in a few weeks. He has been coughing on nectar thick liquids. I'm worried he will have his liquids thickened even more. He barely will drink nectar thick! These last few weeks Uncle Paul (from Idaho) and Grandma (from Alaska) came to visit us. It was so nice seeing them. We love our family:) I'll be able to keep everyone more updated--for a month at least!
xoxo
Denise
Tuesday, December 13, 2011
Wednesday, November 16, 2011
It's raining cats and dogs!!!
Where to begin....hmmm
I have been so very busy with school that I haven't had a chance to keep everyone updated. Along with school, lack of sleep, illness and everything else going on I've been a little frazzled ;/ ---I'll try to remember everything correctly! (haha-sometimes it feels as though time is flying by and everything is a blur)
I believe Ryder's present illness started about 10/28. Les and I noticed a weird looking rash close to his G-tube. It resembled the staph infection he had when he was younger (white pimple looking bumps). Les brought him in to see his pediatrician. She thought it was a yeast infection and prescribed a topical ointment and put him on Cephiloxin (antibiotic) for a 10 day period just in case (since pus was present). He was fine for 3 days and the rash cleared up. Ryder threw up on Halloween night... but ended up feeling well enough to go trick or treating with his brothers for a bit. He was a monkey. I taught him the sign for candy please! It was cute;) He again seemed fine for about 6 days after that. He was a little sluggish and not as energetic and silly as he usually is, but it wasn't to concerning. Around Nov.5 th-ish, he started vomiting, a lot!!! He thrown up at least 5-6 times that first day until he was just dry heaving. He had a slight fever. The next morning he had a fever of 104 and vomited a few more times. We kept him on Ibuprofen and Tylenol to break his fever and make him comfortable. He was still signing that he wanted to eat and he did fairly well with the food he did eat. However, his appettite continued to decrease and he vomited for 4 days. We kept treating the fever. I was worried that Ry might have a strep infection, but Les thought that since he was on antibiotics still that it was going to start getting better and would kill strep if that was the case. On the 5th day, Ryder stopped vomiting, but continued to have a slight fever. He had periods where he'd be playful and happy. It was on the 6th day that I started really getting concerned that he had a fever for 6 days and he was still miserable. He then got the awful seal barking cough and refused to eat. That is when we brought him to PCH urgent care. He had tests and x-rays to rule out pneumonia. He was really "floppy" and just obviously not feeling well at all. The lab results showed a low white blood cell count. The doctor said there was a slight chance he could have a bacteria infection in his blood. He treated him with an injection of heavy duty antibiotics just in case (forget the name of it). He was given steroids for croup and an epi nebulizer. He was able to sleep a little that night once we got home. The next day he woke up early. He was so pale and even more limp. He didn't want to eat or drink anything, but kept signing that he wanted to eat. I wrapped him in a blanket and snuggled with him outside so the cool air would help with croup. Once Les got off from work, he noticed how foul smelling his breath was. Ryder continued to look and act worse and his GI tube was leaking out from the stoma so we brought him back to PCH urgent care. A new doctor gave him a strep test. She also noticed a rash on his genitals. Of course at that time, I was piecing everything together about my prior concern that he had strep, bad breath, not wanting to eat, pale and overall miserable--I convinced myself it was strep from his GI site that had spread and he now he had a rash on his genitals from this--and the 1st rash may had been strep as well. (Noah had a strep rash awhile back). Years ago, I had a student with a strep infection that had spread through his body. It was so bad that he was hospitalized for a week. His breath smelled and he was pale and weak also. So by this time, I'm extra worried and trying to comfort Ryder. The doctor that treated Ry the previous night came in to speak with us along with the new doctor on the case. The doctor told me it would have to be raining cats and dogs for Ryder to have strep with all the antibiotics he had been given. I still continued to state my worries about how often Ryder had been on antibiotics and what if he was resistant? That is when the strep test came back positive!!! Of course I had to tell the doctor I guess its raining those cats and dogs then ;0/ More test and xrays were performed. The doctor noted fluid leaking from his stoma (g-tube site) and the rash on his genitals getting bigger. The doctor wanted to rule out bowel obstruction since Ryder hadn't had a bm that day and had foul breath. Luckily that was clear and his vital signs all were normal. By this time there were several doctors trying to figure this out. They conferred in the room next to ours as I listened through the paper thin walls-haha. Anyways, the doctor came in and said that 5% of the population are strep carriers and will always test positive for strep. He still didn't think it was the case that Ry had strep. He said if it was true that maybe one other person in the world has ever had strep not killed off by the antibiotics Ryder had. They were all at a loss and so we were sent to PCH hospital to observe Ryder and possibly bring in more specialist.
Well.....long story even longer--- Ryder had even more blood draws. My poor guy :( They busted a vain and had to repoke him....then the blood they did collect ended up clotting so he was poked AGAIN :( He is all bruised up now. Anyways.....white blood count came back showing improvement. We are waiting on the blood culture results which should be in today. I had to go to clinical by 6:30 that next morning so Les stayed with Ryder:( He said there wasn't really much they could do at the hospital and since his vitals looked good still they sent them home early. Ryder slept all day long and when I came home at about 3 he had just woken up and was eating a few bites of oatmeal and had a smile on his face:) He played for about 2 hours before he went back to sleep. It is so sad that when he gets sick like this it seems like he has to relearn to walk again...he was so unstable and didn't take more then a few steps before falling. He slept most of the day again today. He is looking a lot better though. He has coughing fits, but is eating a little more and his color and mood is mostly back to his usual:)
So that was most of our hectic last few weeks that I can remember! On top of Ryder not feeling well, Anaya (a little 2 yr old girl with Krabbe leukodystrophy) passed away on Sunday. I was up all night following her progress on Saturday and then devastated by her passing. I have been a walking zombie wreck the past several days or so! I'm hoping to catch up on my sleep, school work and friends & families lives this weekend:)
http://youtu.be/vYfxhsLx1GQ
http://youtu.be/YDVBNHRmcvs
I have been so very busy with school that I haven't had a chance to keep everyone updated. Along with school, lack of sleep, illness and everything else going on I've been a little frazzled ;/ ---I'll try to remember everything correctly! (haha-sometimes it feels as though time is flying by and everything is a blur)
I believe Ryder's present illness started about 10/28. Les and I noticed a weird looking rash close to his G-tube. It resembled the staph infection he had when he was younger (white pimple looking bumps). Les brought him in to see his pediatrician. She thought it was a yeast infection and prescribed a topical ointment and put him on Cephiloxin (antibiotic) for a 10 day period just in case (since pus was present). He was fine for 3 days and the rash cleared up. Ryder threw up on Halloween night... but ended up feeling well enough to go trick or treating with his brothers for a bit. He was a monkey. I taught him the sign for candy please! It was cute;) He again seemed fine for about 6 days after that. He was a little sluggish and not as energetic and silly as he usually is, but it wasn't to concerning. Around Nov.5 th-ish, he started vomiting, a lot!!! He thrown up at least 5-6 times that first day until he was just dry heaving. He had a slight fever. The next morning he had a fever of 104 and vomited a few more times. We kept him on Ibuprofen and Tylenol to break his fever and make him comfortable. He was still signing that he wanted to eat and he did fairly well with the food he did eat. However, his appettite continued to decrease and he vomited for 4 days. We kept treating the fever. I was worried that Ry might have a strep infection, but Les thought that since he was on antibiotics still that it was going to start getting better and would kill strep if that was the case. On the 5th day, Ryder stopped vomiting, but continued to have a slight fever. He had periods where he'd be playful and happy. It was on the 6th day that I started really getting concerned that he had a fever for 6 days and he was still miserable. He then got the awful seal barking cough and refused to eat. That is when we brought him to PCH urgent care. He had tests and x-rays to rule out pneumonia. He was really "floppy" and just obviously not feeling well at all. The lab results showed a low white blood cell count. The doctor said there was a slight chance he could have a bacteria infection in his blood. He treated him with an injection of heavy duty antibiotics just in case (forget the name of it). He was given steroids for croup and an epi nebulizer. He was able to sleep a little that night once we got home. The next day he woke up early. He was so pale and even more limp. He didn't want to eat or drink anything, but kept signing that he wanted to eat. I wrapped him in a blanket and snuggled with him outside so the cool air would help with croup. Once Les got off from work, he noticed how foul smelling his breath was. Ryder continued to look and act worse and his GI tube was leaking out from the stoma so we brought him back to PCH urgent care. A new doctor gave him a strep test. She also noticed a rash on his genitals. Of course at that time, I was piecing everything together about my prior concern that he had strep, bad breath, not wanting to eat, pale and overall miserable--I convinced myself it was strep from his GI site that had spread and he now he had a rash on his genitals from this--and the 1st rash may had been strep as well. (Noah had a strep rash awhile back). Years ago, I had a student with a strep infection that had spread through his body. It was so bad that he was hospitalized for a week. His breath smelled and he was pale and weak also. So by this time, I'm extra worried and trying to comfort Ryder. The doctor that treated Ry the previous night came in to speak with us along with the new doctor on the case. The doctor told me it would have to be raining cats and dogs for Ryder to have strep with all the antibiotics he had been given. I still continued to state my worries about how often Ryder had been on antibiotics and what if he was resistant? That is when the strep test came back positive!!! Of course I had to tell the doctor I guess its raining those cats and dogs then ;0/ More test and xrays were performed. The doctor noted fluid leaking from his stoma (g-tube site) and the rash on his genitals getting bigger. The doctor wanted to rule out bowel obstruction since Ryder hadn't had a bm that day and had foul breath. Luckily that was clear and his vital signs all were normal. By this time there were several doctors trying to figure this out. They conferred in the room next to ours as I listened through the paper thin walls-haha. Anyways, the doctor came in and said that 5% of the population are strep carriers and will always test positive for strep. He still didn't think it was the case that Ry had strep. He said if it was true that maybe one other person in the world has ever had strep not killed off by the antibiotics Ryder had. They were all at a loss and so we were sent to PCH hospital to observe Ryder and possibly bring in more specialist.
Well.....long story even longer--- Ryder had even more blood draws. My poor guy :( They busted a vain and had to repoke him....then the blood they did collect ended up clotting so he was poked AGAIN :( He is all bruised up now. Anyways.....white blood count came back showing improvement. We are waiting on the blood culture results which should be in today. I had to go to clinical by 6:30 that next morning so Les stayed with Ryder:( He said there wasn't really much they could do at the hospital and since his vitals looked good still they sent them home early. Ryder slept all day long and when I came home at about 3 he had just woken up and was eating a few bites of oatmeal and had a smile on his face:) He played for about 2 hours before he went back to sleep. It is so sad that when he gets sick like this it seems like he has to relearn to walk again...he was so unstable and didn't take more then a few steps before falling. He slept most of the day again today. He is looking a lot better though. He has coughing fits, but is eating a little more and his color and mood is mostly back to his usual:)
So that was most of our hectic last few weeks that I can remember! On top of Ryder not feeling well, Anaya (a little 2 yr old girl with Krabbe leukodystrophy) passed away on Sunday. I was up all night following her progress on Saturday and then devastated by her passing. I have been a walking zombie wreck the past several days or so! I'm hoping to catch up on my sleep, school work and friends & families lives this weekend:)
http://youtu.be/vYfxhsLx1GQ
http://youtu.be/YDVBNHRmcvs
Wednesday, October 19, 2011
Miracles on the journey
We received exciting news on Friday! Les took Ryder to the first part of his extensive hearing test (1 of 2). They discovered that Ryder does not have a hearing loss after all (after 2 failed tests)!!!! The test on Monday where they were supposed to put him under was canceled. This was the best news in a long time. Les and I have been taking the boys to church for the past several weeks. Les made a comment that I thought was really sweet. He feels that he hasn't been getting much out of the services, but he also said since we have been going to church a lot of good things have been happening to our family and he can't discount that. I couldn't agree more (but I do get a lot from the services:)The boys have been so happy and have been talking about God a lot. That makes it all worthwhile. I believe in miracles and I know Ryder, as well as the rest of us, have a purpose here on earth. We continue to be so blessed. That is a big statement from the beginning of my blog if you have been following. It really has been quite the journey so far, but I feel we are on the right path and where God is leading us to be:)
Wednesday, October 12, 2011
Clear as mud, but something!
So---here it goes (I might ramble, but try to follow along haha)
Ryder's last MRI (his 3rd so far) was conducted by a 3.0 MRI machine that has a very clear resolution and better magnetic field. ( His previous 2 were on a 1.5 MRI.) It is new technology that makes very small details of the brain observable, where they weren't before. As with all new technology, it is wonderful, but no one is an expert yet at understanding these new images that are being seen so that was the reason for the long waiting on my part.
This new MRI showed abnormal (or funny as the Dr. but it) images of Ryder's cerebellum (specifically in the dentate nucleus) and in his thalamus. The doctor wanted to discuss these findings with another specialist before he reported the findings because he didn't agree with them. He thought that the "funny findings" were due to the extreme clarity of the new MRI machine that most radiologists haven't interpreted yet.
The doctor said that Ryder's myleination looks appropriate. He believes that the cerebellum looks appropriate to Ryder's age despite the results from the radiologist. I'm still questioning this because the cerebellum controls motor, balance, eyes/ears...etc. Ryder has nystagmus, motor delay, is unbalanced and we recently learned about hearing loss as well.
The doctor did see the thalamus abnormality. This controls sensations. Ryder does have difficulty eating, swallowing and has some tactile sensitivities as well.
So what we know for sure: Ryder has nystagmus, axatia, he's hypotonic,hearing loss, developmentally delayed, has difficulty swallowing, an awkward gait and is too stinkin cute for words ;)
So overall, nothing new ;/
In the meantime, the doctor will share Ryder's story on the international child neuro network so more doctors can but their brains together to figure this out and what directions we should go in next.
I was anxiously (and impatiently) waiting to hear any news--I am a Mom though and that is just what we do;) I truly appreciate the doctors who are working hard to help us and figure out what is going on with our little guy. They are in uncharted territory the majority of the time and I know that has got to be rough. Ryder's neurologist goes above and beyond any doctor I have ever!!!!
GREAT NEWS though:
Ryder was approved for Az Long Term Care!!!! AND SSI disability!!!!!!! That is a huge financial burden off our shoulders:)
Thursday, September 29, 2011
Not sure what is going on w/MRI??
I have a few quick updates:
1. Support the Journey Walkathon raised $1587!!!! Thank you so much for your support!!!
2.Ryder had a Mic-Key tube (GI-tube) placed last Monday (9/23). He is still sore, but slowly it seems to be healing. He isn't wanting to eat much lately, so we are relying on the tube more than we'd like to.
3. I got a confusing call from his neuro's nurse tonight. Ryder's MRI was on Sept. 16th. I haven't heard anything so I put in a few calls to his neuro the last couple days. The nurse called me around 5 tonight to let me know the neuro would be calling me w/in the hour and to expect his call on my cell. Then, an hour later she called me back and said that the doctor wants to consult with other specialist about his MRI because he doesn't agree with the report. hmmmmm--not sure what to think of this at all??!!!!! She said he will call me next week after Tuesday (when he can speak w/other specialists and compare w/previous MRI's). I am worried and trying to think of what is going on- but I know this won't help. I'll try to not think about it until next week I guess;(
Meanwhile---I will be keeping busy with nursing school. It is 10X harder than I thought it would be!!!!! Back to studying. I'll update you when I hear what is going on.
1. Support the Journey Walkathon raised $1587!!!! Thank you so much for your support!!!
2.Ryder had a Mic-Key tube (GI-tube) placed last Monday (9/23). He is still sore, but slowly it seems to be healing. He isn't wanting to eat much lately, so we are relying on the tube more than we'd like to.
3. I got a confusing call from his neuro's nurse tonight. Ryder's MRI was on Sept. 16th. I haven't heard anything so I put in a few calls to his neuro the last couple days. The nurse called me around 5 tonight to let me know the neuro would be calling me w/in the hour and to expect his call on my cell. Then, an hour later she called me back and said that the doctor wants to consult with other specialist about his MRI because he doesn't agree with the report. hmmmmm--not sure what to think of this at all??!!!!! She said he will call me next week after Tuesday (when he can speak w/other specialists and compare w/previous MRI's). I am worried and trying to think of what is going on- but I know this won't help. I'll try to not think about it until next week I guess;(
Meanwhile---I will be keeping busy with nursing school. It is 10X harder than I thought it would be!!!!! Back to studying. I'll update you when I hear what is going on.
Sunday, September 18, 2011
Full of LOVE
What an absolutely AMAZING experience! I am still beaming after the walk for Ryder yesterday:) It has been quite a rough year after learning about what is happening to our baby. There have been plenty of days where I've wanted to just stay in bed and cry. Let me tell you though, after yesterday- I am re-energized and have a heart so full I'm ready to welcome life's challenges, knowing we have a wonderful support system that we can lean on:)
I was so very touched by those of you that took the time out of your busy schedule to show our family that you care:) There were a few people in the middle of moving, a few sick friends/ injured, 1 that was 8 months pregnant, friends with multiple children with leukodystrophy/ special needs, supporters that have never met Ryder, but follow his blog, past and current co-workers and students, the boys football buddies and parents (they even had a game yesterday!!), old neighbors/good friends, several people drove more than an hour, while others were caught in freeway closures, old high school friends, friends of my sister, more than half w/ a full day of plans and little ones to wake up early,a lady celebrating her birthday, the 31 consultant I worked with for a while (who donated half the water!), Ryder's neurologist and wife (who had to work after the walk) and even a group of supporters in Chicago got together for a walk to show Ryder support!!! I just want you all to know that I truly appreciate you taking the time out of your day to be there for us:) It meant the WORLD to us---and I've needed that lately;) XOXOXOXOXO
I also want to give Renee and Scott another HUGE THANKS for organizing the whole event and rounding up raffle items, food and coordinating it all--Love you guys:)
For those of you that couldn't attend, thanks for the encouraging words and donations:)
I will give you the total amount raised once Renee closes the fundraiser account (I believe she said Tuesday).
I'll also upload pictures when I get them from Scott & Renee.
On a side note---Ryder fell and banged his mouth on one of the kiddie mall rides. When I got home I noticed he had chipped his tooth :( Does anyone know where I can purchase a huge bubble to keep him safe in???!!! Poor kiddo. Tyler was excited that he and Ryder have a matching chipped tooth now.
Well, I have a full day of studying (yippee:) Just wanted to share some about the walk yesterday with you all!
I was so very touched by those of you that took the time out of your busy schedule to show our family that you care:) There were a few people in the middle of moving, a few sick friends/ injured, 1 that was 8 months pregnant, friends with multiple children with leukodystrophy/ special needs, supporters that have never met Ryder, but follow his blog, past and current co-workers and students, the boys football buddies and parents (they even had a game yesterday!!), old neighbors/good friends, several people drove more than an hour, while others were caught in freeway closures, old high school friends, friends of my sister, more than half w/ a full day of plans and little ones to wake up early,a lady celebrating her birthday, the 31 consultant I worked with for a while (who donated half the water!), Ryder's neurologist and wife (who had to work after the walk) and even a group of supporters in Chicago got together for a walk to show Ryder support!!! I just want you all to know that I truly appreciate you taking the time out of your day to be there for us:) It meant the WORLD to us---and I've needed that lately;) XOXOXOXOXO
I also want to give Renee and Scott another HUGE THANKS for organizing the whole event and rounding up raffle items, food and coordinating it all--Love you guys:)
For those of you that couldn't attend, thanks for the encouraging words and donations:)
I will give you the total amount raised once Renee closes the fundraiser account (I believe she said Tuesday).
I'll also upload pictures when I get them from Scott & Renee.
On a side note---Ryder fell and banged his mouth on one of the kiddie mall rides. When I got home I noticed he had chipped his tooth :( Does anyone know where I can purchase a huge bubble to keep him safe in???!!! Poor kiddo. Tyler was excited that he and Ryder have a matching chipped tooth now.
Well, I have a full day of studying (yippee:) Just wanted to share some about the walk yesterday with you all!
Thursday, September 8, 2011
Sad today about my little guy:(
I brought Ryder to the ENT for a follow-up exam from his ear infection. I also asked the doctor to conduct a hearing test per advice from the "sub" pediatrician (she said ears and eyes need to be followed with kiddos w/leukodystrophy). Ryders ear infection in his right ear has cleared up and looks normal. I was shocked to learn that Ryder has hearing loss in his left ear. His right ear has been having the recent infections, but his hearing seems fine in that ear. The procedure is being scheduled to put Ryder under anesthesia so that they can test for the percentage of hearing loss. A hearing aide may be in Ryder's near future. He will be getting glasses later this month as well.
I am concerned that Ryder will be under anesthesia 3 times within a month to month and a half. The doctors haven't shown any concern about this, but I am putting in calls to every doctor of Ryder's to see if I should be worried.
I also have been calling the pediatric surgeon because there still is not a scheduled date for his G.I. tube placement. He continues not to drink as much as he should and I am worried about dehydration again. I give up on the NG tube because he just pulls it out after one use. It is traumatic for us all to insert the tube especially when it is daily now.
I am concerned that Ryder will be under anesthesia 3 times within a month to month and a half. The doctors haven't shown any concern about this, but I am putting in calls to every doctor of Ryder's to see if I should be worried.
I also have been calling the pediatric surgeon because there still is not a scheduled date for his G.I. tube placement. He continues not to drink as much as he should and I am worried about dehydration again. I give up on the NG tube because he just pulls it out after one use. It is traumatic for us all to insert the tube especially when it is daily now.
Friday, September 2, 2011
Some exciting news, some not so much & caught purple handed:)
I have several things to report today. Some are exciting and some not so much. Since I am an optimist, I will report the exciting stuff first :-)
2. A cousin's daughter attends chaparral high school. In her anatomy and physiology class they are learning about leukodystrophy. They just finished watching the movie Lorenzo's oil. I am thrilled that they are learning about leukodystrophy in school now! Off the subject a little bit, Lorenzo's oil is a great movie. However, to me: Lorenzo's oil is to leukodystrophy as the movie Rainman is to autism. There are 40+ leukodystrophies known to date. There are a range of symptoms and severity's. I would love a chance to bring Ryder to chaparral high school and introduce him to the class. Not only would it give them a first-hand look at some symptoms of leukodystrophy, it would also help them put a face on leukodystrophy. Who wouldn't fall in love with Ryder after they met him?! As a special education teacher and now having a child with special needs I am a firm believer in putting the child/person in front of the disability.For example,Ryder is a child with special needs not a special needs child. He is a child's with a brain disease not a brain diseased child. My skin used to crawl when others referred to my students as the autistic kids or the autistic classrooms. Remember, they're people first! Who wants to be pointed out by a disability or difference? I hope this gives you something to stop and think about when speaking to/or about a person with a disability. Okay I'm done with my tangent! Back on topic, I am so excited leukodystrophy awareness is spreading in schools. Remember September is leukodystrophy awareness month so please help spread the word!
3. Bounce U (in Gilbert) has offered to have Ryder's birthday party there on Tuesday, September 6th from 5-8p.m.! If you would like to join us we'd be more than happy to have you! I'm not sure of the admission fee but I think it's $7 per kid and adults are free. I know there are a lot of coupons out there for bounce u. We will provide the pizza and cake! Just give me a heads up if you think you'll be able to join us. I can give you more details if needed. Thanks Bounce U !! Ryder is going to have a blast!
Okay the not so fun news now......
4. I brought Ryder to the pediatrician and she confirmed yet another ear infection. It was kind of obvious with the pus oozing out of his ear! Two days later I brought Ryder to the ENT. He suctioned loads and loads of gunk out of Ryder's right ear. The left ear looks fine. However, I have to bring Ryder back in a week to see if there is any more drainage or debris. Ryder got tubes placed in his ears in April, but continues to get an ear infection about once a month. I did mention that Ryder will be getting an MRI of his brain soon. The pediatrician also ordered an MRI of his ear.The ENT mentioned there might be a possibility of cholesteatoma. I'm not going to jump that far ahead right now because that is a more serious issue requiring surgery. Let's just pray that his ear is clear next Thursday. I was in nursing classes all day today and grandma took care of Ryder. She did say there was crust on his ear when he woke up.
One day at a time I guess.
1. I got news yesterday from Renée that Ryder's neurologist called her and will attend the walk on the 17th with his wife. How amazing is that! This doctor is so dedicated, caring and considerate. I have never met another Dr. quite like him. He gets back information super fast and truly listens to my concerns. A friend who's children also see him, contacted Dr. N about Ryder and our bad experiences w/past neurologists. Long story short, my friend contacted this doctor at night through e-mail. He responded in 5 min.! He saw Ryder the next morning! He's a good person and I recommend him to anyone needing a pediatric neurologist! Anyways I just wanted to share this because it made my night and I was still smiling today about this:)!
2. A cousin's daughter attends chaparral high school. In her anatomy and physiology class they are learning about leukodystrophy. They just finished watching the movie Lorenzo's oil. I am thrilled that they are learning about leukodystrophy in school now! Off the subject a little bit, Lorenzo's oil is a great movie. However, to me: Lorenzo's oil is to leukodystrophy as the movie Rainman is to autism. There are 40+ leukodystrophies known to date. There are a range of symptoms and severity's. I would love a chance to bring Ryder to chaparral high school and introduce him to the class. Not only would it give them a first-hand look at some symptoms of leukodystrophy, it would also help them put a face on leukodystrophy. Who wouldn't fall in love with Ryder after they met him?! As a special education teacher and now having a child with special needs I am a firm believer in putting the child/person in front of the disability.For example,Ryder is a child with special needs not a special needs child. He is a child's with a brain disease not a brain diseased child. My skin used to crawl when others referred to my students as the autistic kids or the autistic classrooms. Remember, they're people first! Who wants to be pointed out by a disability or difference? I hope this gives you something to stop and think about when speaking to/or about a person with a disability. Okay I'm done with my tangent! Back on topic, I am so excited leukodystrophy awareness is spreading in schools. Remember September is leukodystrophy awareness month so please help spread the word!
3. Bounce U (in Gilbert) has offered to have Ryder's birthday party there on Tuesday, September 6th from 5-8p.m.! If you would like to join us we'd be more than happy to have you! I'm not sure of the admission fee but I think it's $7 per kid and adults are free. I know there are a lot of coupons out there for bounce u. We will provide the pizza and cake! Just give me a heads up if you think you'll be able to join us. I can give you more details if needed. Thanks Bounce U !! Ryder is going to have a blast!
Okay the not so fun news now......
4. I brought Ryder to the pediatrician and she confirmed yet another ear infection. It was kind of obvious with the pus oozing out of his ear! Two days later I brought Ryder to the ENT. He suctioned loads and loads of gunk out of Ryder's right ear. The left ear looks fine. However, I have to bring Ryder back in a week to see if there is any more drainage or debris. Ryder got tubes placed in his ears in April, but continues to get an ear infection about once a month. I did mention that Ryder will be getting an MRI of his brain soon. The pediatrician also ordered an MRI of his ear.The ENT mentioned there might be a possibility of cholesteatoma. I'm not going to jump that far ahead right now because that is a more serious issue requiring surgery. Let's just pray that his ear is clear next Thursday. I was in nursing classes all day today and grandma took care of Ryder. She did say there was crust on his ear when he woke up.
One day at a time I guess.
5 We continue to wait for the G.I. placement. Meanwhile, Ryder seems to have more and more difficulty swallowing :( Even his favorite foods such as cereal bars (nutrigrain) have been giving him trouble lately. He chokes/coughs/gags and at times vomits even on his thickened fluids/foods. He really does enjoy eating certain foods. I hope I don't have to see the day that he is no longer able to pleasure eat. Sadly this is the case in a lot of individuals with leukodystrophy. This birthday (on Tuesday), I intend to give him all the cake and ice cream he wants while he can still enjoy it!!!! Another swallow study will be performed after he gets his G.I. placement.
That's my update for now. I'm including a picture of what happens when Ryders' big brothers are supposed to be keeping an eye on him real quick ;) (Yes he pulled out his NG tube before this picture--I just had to place it again tonight---I HATE that thing!!)
I think he was trying to look older by giving himself a mustache...but I caught him before he could finish!!!hehe. He threw the marker when I walked into the room so he knew he was caught:)
Monday, August 29, 2011
Sick again poor kid!
Ryder is still having a hard time balancing, eating, drinking and is just all around unhappy this week. Last night was very rough. He didn't really take a nap in the afternoon and was up the majority of the night. I brought him in our bed to sleep with us and I noticed that he was jerking/tremoring throughout the night. It really scared me. I wasn't sure if it was seizures, dreams or just tremors. I was up watching him to figure it out, but I couldn't. This morning he had physical therapy. He was falling all over the place. He spit up, which he has been doing a lot lately even with thickend liquid. I am still waiting for the appointment to get his G I tube placed. A few hours ago I noticed drainage from his ear. It looks like he has another ear infection. This may be the cause of the last few days being rough. I will call the doctor tomorrow. I thought getting the tubes in his ears would help reduce infections. It doesn't seem to be the case though. I guess they are draining better than they used to at least.
Ryder's birthday is next week on September 5. I can't believe my baby will be 2!!!! I haven't decided if we should have a birthday party yet because the walk is in a few weeks. I guess I should start making plans for small party at least! Any suggestions that would be cheap yet fun for Ryder?
Noah has been doing great since his surgery. It was worse than I thought it would be. He had to get a spinal tap and stitches in the area. He was off from school for two days, but is doing just fine now.
Remember the walk is on September 17. René needs to have the total number of walkers by September 3. Please e-mail her at rlnap@hotmail.com. We will be singing happy birthday to Ryder at the end of the walk. I can't wait to celebrate with you and spread leukodystrophy awareness!
PS for those of you that commented on the Dragon (which I still love) it is on sale at OfficeMax this week for $39.99----awesome deal go get one!!
Ryder's birthday is next week on September 5. I can't believe my baby will be 2!!!! I haven't decided if we should have a birthday party yet because the walk is in a few weeks. I guess I should start making plans for small party at least! Any suggestions that would be cheap yet fun for Ryder?
Noah has been doing great since his surgery. It was worse than I thought it would be. He had to get a spinal tap and stitches in the area. He was off from school for two days, but is doing just fine now.
Remember the walk is on September 17. René needs to have the total number of walkers by September 3. Please e-mail her at rlnap@hotmail.com. We will be singing happy birthday to Ryder at the end of the walk. I can't wait to celebrate with you and spread leukodystrophy awareness!
PS for those of you that commented on the Dragon (which I still love) it is on sale at OfficeMax this week for $39.99----awesome deal go get one!!
Tuesday, August 23, 2011
Grumpy boy
Ryder has been so grumpy the last few days. I figured out today that his second molars are coming through. Poor kiddo. He's been having trouble sleeping and just wants to be held. That's okay with me because I love to cuddle with him.
When he isn't feeling well, he gets very unbalanced. He has several new bruises on his head because he has been falling so much. It is like watching a very drunk person trying to walk. He is starting to get very frustrated when he can't do things that he wants to do. It's really hard to watch as a mom. I can't believe he's almost 2 years old! In just a few weeks, on September 5, my baby will be 2!!!
We got more test results back that came back normal. They were chromosomal array tests that were looking for Trisomal 21 and links to autism. I could've told you before the tests, that this wasn't the case with Ryder. Another gene test came back normal for Kearns syndrome. Ryder is now being scheduled for an MRI and a Mic-Key tube placement.
Noah has a scheduled surgery tomorrow morning. He will have a meatoplasy procedure done. He will be under general anesthesia to get his urethral opening widened. He will have stitches. My poor guy! Please pray for a speedy recovery. My first day of full-time nursing school begins tomorrow. Daddy will be bringing Noah to the surgery. I am so sad not to be the one bringing him. I will definitely be cuddling with him all night though once I get home.
September is Leukodystrophy awareness month. I'm sure you have all heard of the walkathon that Renée has worked hard on putting together. Flyers have been sent out, Evite and Facebook messages have been sent. This is the first ever mall walk in Arizona! Please, please, please help us make it a success! I know it is very early...... for those that know me I love my sleep! But it is just one day, and it would mean so very much to me that you make an effort to be there! I want to make leukodystrophy known to the doctors, therapists and community. Not only will Ryder benefit, but other families affected by leukodystrophy will also be helped. The walk is only half a mile. For those of you that can't walk, you could help Renée at registration. We need the numbers! Let's help make this world a better place for our children!
Love to you all,
Ryder's Mama
When he isn't feeling well, he gets very unbalanced. He has several new bruises on his head because he has been falling so much. It is like watching a very drunk person trying to walk. He is starting to get very frustrated when he can't do things that he wants to do. It's really hard to watch as a mom. I can't believe he's almost 2 years old! In just a few weeks, on September 5, my baby will be 2!!!
We got more test results back that came back normal. They were chromosomal array tests that were looking for Trisomal 21 and links to autism. I could've told you before the tests, that this wasn't the case with Ryder. Another gene test came back normal for Kearns syndrome. Ryder is now being scheduled for an MRI and a Mic-Key tube placement.
Noah has a scheduled surgery tomorrow morning. He will have a meatoplasy procedure done. He will be under general anesthesia to get his urethral opening widened. He will have stitches. My poor guy! Please pray for a speedy recovery. My first day of full-time nursing school begins tomorrow. Daddy will be bringing Noah to the surgery. I am so sad not to be the one bringing him. I will definitely be cuddling with him all night though once I get home.
September is Leukodystrophy awareness month. I'm sure you have all heard of the walkathon that Renée has worked hard on putting together. Flyers have been sent out, Evite and Facebook messages have been sent. This is the first ever mall walk in Arizona! Please, please, please help us make it a success! I know it is very early...... for those that know me I love my sleep! But it is just one day, and it would mean so very much to me that you make an effort to be there! I want to make leukodystrophy known to the doctors, therapists and community. Not only will Ryder benefit, but other families affected by leukodystrophy will also be helped. The walk is only half a mile. For those of you that can't walk, you could help Renée at registration. We need the numbers! Let's help make this world a better place for our children!
Love to you all,
Ryder's Mama
Thursday, August 18, 2011
Support the Journey Walkathon
How many of us wake up every day wanting to make a difference but never take a step toward that goal?
The “Support the Journey” Walkathon will benefit a very special family in a time of need. The Hauer’s are a family dedicated to helping others. They have been faced with many challenges in life, none greater than raising a child with Leukodystrophy. Their son Ryder was diagnosed in 2010 and immediately had an impact on their lives. Although the Hauer’s lost their house, their vehicle, and even medical insurance coverage, they never lost hope!! To learn more about Ryder’s Journey, please visit rydersjourney2009.blogspot.com
This is a time where family and friends matter most, and it has always been the Hauer’s position to “pay it forward” when they are in a position to do someday. Put on a Blue Shirt and join us in supporting their very special Journey of Life.
What: Support the Journey Walkathon
When: September 17, 2011
Time: Registration begins at 7:00am – the walkathon starts at 7:30am
Where: Chandler Fashion Mall – Registration will be in the food court
Date to register by: September 3rd
Contact: Renee Rosner 480-510-5219 or email: rlnap@hotmail.com to provide names of all participants planning to walk in this event.
For those participating in the Chicago Virtual Walk, please contact Cassidy Anderson cassidy_anderson@hotmail.com
Donations: Registration for the event is a minimal of $10.00 donation.
Please register all donations to:
Bank: Chase
Account Name; Support the Journey
Account #: 980796254
All participants will receive a raffle ticket and complimentary refreshments.
We truly appreciate your support and look forward to making a difference together!!
The “Support the Journey” Walkathon will benefit a very special family in a time of need. The Hauer’s are a family dedicated to helping others. They have been faced with many challenges in life, none greater than raising a child with Leukodystrophy. Their son Ryder was diagnosed in 2010 and immediately had an impact on their lives. Although the Hauer’s lost their house, their vehicle, and even medical insurance coverage, they never lost hope!! To learn more about Ryder’s Journey, please visit rydersjourney2009.blogspot.com
This is a time where family and friends matter most, and it has always been the Hauer’s position to “pay it forward” when they are in a position to do someday. Put on a Blue Shirt and join us in supporting their very special Journey of Life.
What: Support the Journey Walkathon
When: September 17, 2011
Time: Registration begins at 7:00am – the walkathon starts at 7:30am
Where: Chandler Fashion Mall – Registration will be in the food court
Date to register by: September 3rd
Contact: Renee Rosner 480-510-5219 or email: rlnap@hotmail.com to provide names of all participants planning to walk in this event.
For those participating in the Chicago Virtual Walk, please contact Cassidy Anderson cassidy_anderson@hotmail.com
Donations: Registration for the event is a minimal of $10.00 donation.
Please register all donations to:
Bank: Chase
Account Name; Support the Journey
Account #: 980796254
All participants will receive a raffle ticket and complimentary refreshments.
We truly appreciate your support and look forward to making a difference together!!
Wednesday, August 17, 2011
Short update
I got a new toy for my birthday. My mom bought me the Dragon program for my computer. All I have to do is talk so it dictates everything I say. It's going to make keeping this blog updated much faster and easier! There's not too much to update right now. Les took Ryder to the CRS clinic yesterday. He recorded the session so I knew what was going on. It was funny listening to it. Les of course, is the typical guy. Questions like how old is Ryder's mom, Les answered 30... Ha ha only four years off. It made me smile though. It was just an evaluation meeting, so nothing much to report. I brought Ryder to a pediatric surgeon today. He is still at 24.4 pounds and 33 inches long. He was so happy today. He has been walking a lot. The last few days he has been unbalanced and gotten a few bruises on his head. I hope this will pass soon. The doctor and I agreed upon a Mic-Key tube. I will be getting a call soon to set up that appointment. I'm happy that I don't have to keep on putting in the NG tube. Poor baby.
Noah went to the urologist on Friday. Good news, it doesn't seem that he had Addison's disease. Bad news, he has an outpatient surgery this Friday to enlarge the hole on his penis. Ouch!!! Poor guy! A friend of mine has a son that went through the same thing. She said it's not too bad. I hope not!
My friend has been working up a wonderful fundraiser for Ryder and our family. I will get information out to you soon. For now, if you live in Arizona or Chicago, please save the date of September 17, 2011. I am so excited and feel blessed to have such wonderful friends and support in our lives.
This post only took me about 4 min.!!! I will update more frequently and soon! Thanks mom, for the awesome gift!
Noah went to the urologist on Friday. Good news, it doesn't seem that he had Addison's disease. Bad news, he has an outpatient surgery this Friday to enlarge the hole on his penis. Ouch!!! Poor guy! A friend of mine has a son that went through the same thing. She said it's not too bad. I hope not!
My friend has been working up a wonderful fundraiser for Ryder and our family. I will get information out to you soon. For now, if you live in Arizona or Chicago, please save the date of September 17, 2011. I am so excited and feel blessed to have such wonderful friends and support in our lives.
This post only took me about 4 min.!!! I will update more frequently and soon! Thanks mom, for the awesome gift!
Thursday, August 4, 2011
Whirl-Wind Changes--our life as usual!!!
I feel like time is just flying by and Ryder’s story changes so quickly! Instead of writing the long story of the conference, I think I’ll keep it simple with the updates since then. I’ll happily tell you more if you’d likeJ
- Since the last update (concerned about Noah) I’ve spoke to 3 different doctors (ped, genetic specialist and neuro.) They have all reassured me that if Noah had
Addison ’s, he’d be sick and suffered from dehydration in his past. Noah is very healthy and active. He is super tan for our family (still a little worried in the back of my mind), but am still riding this out. He has an appointment with the urologist on Monday because he’s having accidents during the day, which is unlike him. Poor guy L - Ryder has had 3 doctor’s appointments in the last week and 3 different labs tests. His neurologist ordered another
MRI and a few other leuko tests. The GI referred us to a surgeon for a GI tube (he pulls the NG tube out a lot) which is scheduled for the 17th of August.. He continues to refuse liquids=dehydration and he’s constipated. - With the GI tube, life will be steadier for awhile. I decided to go to nursing school after all. I hate giving up the responsibility for full time care, but my Mom will take the role---which is so awesome! Her work is flexible with her working from home—luckily! Since Noah doesn’t seem to be a risk for ALD, I’m more comfortable with going to school.
- Ryder is now being tested for T1T2T3 chromosome abnormalities (after researching I don’t think it’s the case), a chromosome array and 1 more thing that’s drawing a blank right now—hmmm!
- The blanket I made sold for $200 at the ULF auction!!!!! I met so many wonderful families and doctors there. Mike and Helen (Coopers Mom & Dad) ended up buying the blanket for another family (after a biding war between the twoJ) we definitely made friends for life at the conference!!! I found out that Janet Read passed away today. We met her at the conference and spoke with her many times on the phone---a sweet lady that will be missedL
- Ryder now knows how to take off his diaper---yuck!!! I turned around yesterday and he was actually squatting on the floor pooping, while holding his diaper—AAAHHH!!!! This is like the 5th time (you’d think we’d learn our lesson—ha-ha). We’ll I am going to start potty training. It seems soon—much sooner than I expected, but since he’s taking his diaper off every chance he gets—it might be time???!!!!
That’s all the updating for tonightJ all the boys are finally sleeping, so I should go to bed as wellJ
Good night—sleep tight and don’t let the bed bugs biteJ!!!
Sunday, July 17, 2011
Short version of a long story & our lives changing directions--yet again!
I have soooo very much information to share after our recent trip and going to the ULF conference. I will have to wait until we are home and I have more time to give the whole story. But for now...a few quick updates--We've met new amazing friends and supporters, lots of doctors and have a whole lot more information and opportunities for Ryder!!!!!
Some very recent discoveries and changes in short version---
1. I am concerned about Noah being affected as well. It may not be the case--but learned that his skin coloring may be a sign. We've always called him our beach baby and he gets so many compliments on his skin tone---well of course---he is so gorgeous!!!!! It may be a sign of Addison's disease. The whole family needs to be tested.
2. I have a lot of symptoms as a possible carrier.....fatigue, bladder issues, migraines, okay--I'm always tripping and stubbing my toes--so a little clumsy!!I get dizzy and have blurred vision and lower back pain often. It could be the many other diagnoses I have--or from stress--but further evaluation will be done. Symptoms often appear in a woman's 30's....hmmm
3. Ryder has pulled out his NG tube and it is really irritating his skin and obviously uncomfortable for him. We will be getting a G-tube or Mic-key tube (don't know the difference yet?) when we get home...which means back to the hospital for us---uugh. NG tubes are meant for short term. In reality, Ry will not regain swallowing skills and will always need asistance.
4. I will not be attending nursing school as planned. My kids need me now and that's more important. I will go back to school---even if I'm 80--to be a nurse:) I guess sometimes you have to put your own dreams on the back burner when you are a mama! This choice is partly for Ry and his medical needs and because I just learned both boys got excepted into Eduprize (charter school w/very long waiting list---w/focus on science/hands on curriculum---just awesome all around!!!!) They start this Thursday--if we get home in time from our trip!!! We are supposed to get home on Wednesday, but flying stand-by. Hail damaged some Frontier plans (which we are flying) and they canceled many flights. The school will accommodate us since we had a 4 day notice of acceptance!
5. I'd like to speak with my side of the family more about medical history (so expect a call or visit;) Al ports syndrome sounds a lot like advancement of a leukodystrophy--without cerebral disease (which happens) Kidney issues (overall organ functioning is affected in leuko) hearing, vision, walking and so on. It might not be anything--but interesting to learn more about.
6. I need help finding a pro bono lawyer, starting fundraisers (will be going to Kennedy Krieger or Mayo Clinic often) and referrals for endocrinologist (understanding leukodystrophy) and physiologist.
I think those are the top updates for now---if this is the short version-- the whole story may be a novel (haha)
****ironic observation--when I run spell check leukodystrophy comes up as catastrophy (that it sure is!!!!)
Some very recent discoveries and changes in short version---
1. I am concerned about Noah being affected as well. It may not be the case--but learned that his skin coloring may be a sign. We've always called him our beach baby and he gets so many compliments on his skin tone---well of course---he is so gorgeous!!!!! It may be a sign of Addison's disease. The whole family needs to be tested.
2. I have a lot of symptoms as a possible carrier.....fatigue, bladder issues, migraines, okay--I'm always tripping and stubbing my toes--so a little clumsy!!I get dizzy and have blurred vision and lower back pain often. It could be the many other diagnoses I have--or from stress--but further evaluation will be done. Symptoms often appear in a woman's 30's....hmmm
3. Ryder has pulled out his NG tube and it is really irritating his skin and obviously uncomfortable for him. We will be getting a G-tube or Mic-key tube (don't know the difference yet?) when we get home...which means back to the hospital for us---uugh. NG tubes are meant for short term. In reality, Ry will not regain swallowing skills and will always need asistance.
4. I will not be attending nursing school as planned. My kids need me now and that's more important. I will go back to school---even if I'm 80--to be a nurse:) I guess sometimes you have to put your own dreams on the back burner when you are a mama! This choice is partly for Ry and his medical needs and because I just learned both boys got excepted into Eduprize (charter school w/very long waiting list---w/focus on science/hands on curriculum---just awesome all around!!!!) They start this Thursday--if we get home in time from our trip!!! We are supposed to get home on Wednesday, but flying stand-by. Hail damaged some Frontier plans (which we are flying) and they canceled many flights. The school will accommodate us since we had a 4 day notice of acceptance!
5. I'd like to speak with my side of the family more about medical history (so expect a call or visit;) Al ports syndrome sounds a lot like advancement of a leukodystrophy--without cerebral disease (which happens) Kidney issues (overall organ functioning is affected in leuko) hearing, vision, walking and so on. It might not be anything--but interesting to learn more about.
6. I need help finding a pro bono lawyer, starting fundraisers (will be going to Kennedy Krieger or Mayo Clinic often) and referrals for endocrinologist (understanding leukodystrophy) and physiologist.
I think those are the top updates for now---if this is the short version-- the whole story may be a novel (haha)
****ironic observation--when I run spell check leukodystrophy comes up as catastrophy (that it sure is!!!!)
Thursday, July 7, 2011
home now
We're home!!! Aaahhh...after 6 days in the hospital we were all going stir crazy! Of course all the staff fell in love with Ryder...who wouldn't:) We were trained on his home care and I was confident going home. I wasn't expecting the new emotions after we got home. It was so surreal having to worry about his pump and pulling out his NG tube. I keep reminding myself its a new phase in our daily reality. We are excited to meet families in our situation and speak with doctors who may have more insight for us at the conference:)
Friday, July 1, 2011
conti. update.....tube is in
continued update.....
sorry..couldn't turn pic!
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Well "training" meant I just jumped right in and put the tube in myself with supervision. As of now Ryder has a NG tube through his nose down into his stomach. I put the tube 34 cm down through his nose. I started crying after the 1st 10 cm with him screaming:( I was definitely traumatized doing that more than Ryder was! It was scary, but I needed to be able to do it so I can care for him at home. It was better that way so I don't stay up dreading the task all night! He will have a pump at night for fluids and I was given a stethoscope. I am getting a quick crash course before starting my nursing classes at least! Anyways, Ryder seems to be adjusting to it so far. We will be in the hospital until Monday night. We are hoping he doesn't try pulling it out of his nose. If he does, we will need to get a GI tube through his stomach. I sent Les home to grab some pillows and stuff so at least we can be a little more comfortable! My cell phone is out of battery...Les will grab my charger too (if he remembers). I forgot to mention in the 1st update that Ryder has another ear infection also. His right ear is draining tons of puss..yucky. The doctor said that means the tubes are working at least.
sorry..couldn't turn pic!
In the hospital--but doing ok
I don't have much time...but have a lot of info to update so I'll just get right to it. Ryder has been having trouble w/constipation & difficulty swallowing. I thought his constipation had cleared up 2 weeks ago after a 3 day clean out w/miralax & sentrox...then miralax daily. I was wrong. He is still having daily, soft bm's, but he is very, very blocked up still and in pain having bm's. He went to have a swallow study done about 2 weeks ago as well. We had to thicken his liquids and give him even smaller bites of solid foods as a result of that visit. He hates the thickened liquids. He has barely gotten down 10 oz (if even) of fluid a day for several weeks now. I called the GI yesterday and also also talked to a nutritionist. They were very concerned about him and held a meeting to discuss a plan of action. In a few hours I was called back and told to pack our bags for at least 1-3 days and bring him to the hospital as soon as we could. Since no beds were available, we waited in triage last night until about 2am. Blood work & x-rays were done. We discovered he is still very constipated/blocked up. He has been getting rehydrate through IV.....luckily he wasn't to dehydrated and we caught this in time:) His blood work came back normal, so he is still getting adequate nutrition--as of now, but since he is such a picky eater, having trouble swallowing and hardly drinking anything, a feeding tube will be placed today. We are being trained how to insert it and manage that today. He is also getting flushed out...thank goodness! Les and I wish we where still in triage!! The budget cuts are sooo apparent in the hospital--very sad! We've had no pillows, a roach crawled across the floor and into/under my bag (uugh--made Les hunt it down), there isn't enough staff and just all around uncomfortable. Ryder refused to sleep in the crib so Les, Ryder and I all spent the night on a 3 seated couch. I had a migraine, but they couldn't give me Tylenol and the gift shop was closed!!!! Today is my birthday----I think I'm going to have a redo birthday next week;)
We are being called into training so wish us luck!
We are being called into training so wish us luck!
Sunday, June 19, 2011
My happy boy is back!
Ahhh- 3 day treatment almost done and I have one happy little guy now:) He is walking like crazy!!!!!!!Wish I could have caught this a lot sooner--but glad he is feeling better:) I need to get creative with his diet now....no dairy or bananas. He is so picky w/textures and won't eat crunchy or chewy things--my funny boy;) His belly is back to normal. He was so bloated, but I didn't notice because it was gradual--thought he was finally gaining weight:( I love that he is happy and playful again!!!! I just LOVE this kid!!! And my Tyler and Noah:) I'm sooo very blessed:)
Friday, June 17, 2011
We went to the GI and got X-rays of Ryder's tummy. He is very, very constipated and blocked up (way up high):( My poor baby. He's been fussing and screaming when having bm's for over a week--but soft bm's everyday. He has been waking up every night and not able to be comforted. His ped. told us not to worry unless the bm's were hard. I called the GI after watching him in so much pain the next day. Since he is hypotonic (weak trunk muscles) the GI feels his colon is weak too. He will be flushed out the next 3 days and then take medicine daily to help him:(
Thursday, June 16, 2011
tummy troubles
The GI had some answers for me today. Because Ryder is hypotonic (has weak core muscles) his colon/intestines are most likely weak as well. He is probably constipated and in pain from a blockage. He has regular, soft bm's daily, but the doctor doesn't think he is getting it all out and it continues to block up. We are going for an X-Ray and some laxatives tomorrow. He feels this is why Ryder is waking up at 4am and not eating as much because he feels full and is in pain:( His therapies were rough today. He is struggling this week:( Hopefully we can get his tummy back on track and help him get back on track.
On a positive note--Ryder is now signing more please (together) and hat:)
On a positive note--Ryder is now signing more please (together) and hat:)
Wednesday, June 15, 2011
Frustrated, Sad, Confused--I don’t know!
This is a down week for Ryder. I just don’t understand how leukodystrophy can cause these up and down patterns I’m seeing in Ryder. It seems like its 2 weeks up 1 week down. I just don’t understand how his brain is working like this??? He is in such pain having a BM the last several weeks. I called the doctor about it, but they feel its just gas because he is still having soft BMs. I watched him tonight and he was just screaming in pain while having a bm. Its been at least a month---daily of this pain. I’m not sure what is going on. I’m going to call the GI tomorrow.
Today Ry seemed so weak. He wouldn’t hold his hands up for us to pick him up. He’s been waking up at screaming and not easily comforted. He continues to cough/choke when he eats and drinks. This all sucks so much!!!
Thursday, June 9, 2011
I am the child who cannot talk.
I am the child who cannot talk.You often pity me. I see it in your eyes.You wonder how much I am aware of...I see that as well.I am aware of much...whether you are happy or sad or fearful,patient or impatient, full of love and desire, or if you are just doing your duty to me.I marvel at your frustration, knowing mine to be far greater, for I cannot express myself nor my needs as you do.You cannot conceive my isolation, so complete it is at times.I do not gift you with clever conversation, cute remarks to be laughed over and repeated.I do not give you answers to your everyday questions,responses over my well-being, sharing my needs,or comments about the world around me.I do not give you rewards as defined by the world's standards...great strides in development that you can credit yourself.I do not give you understanding as you know it.What I give you is so much more valuable...I give you instead opportunities.Opportunities to discover the depth of your character, not mine;the depth of your love, your commitment, your patience,your abilities; the opportunity to explore your spirit more deeply than you imagined possible.I drive you further than you ever go on your own,working harder, seeking answers to your many questions,creating questions with no answers.I am the child who cannot talk.
I am the child who cannot walk.The world sometimes seems to pass me by.You see the longing in my eyes to get out of this chair,to run and play like other children.There is much you take for granted.I want the toys on the top shelf.I need to go to the bathroom...oh...I've dropped my spoon again!I am dependent on you in these ways.My gift to you is to make you aware of your great fortune,your healthy back and legs, your ability to do for yourself.Sometimes people appear not to notice me; I always notice them.I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent.I give you awareness.I am the child who cannot walk.
I am the child who is mentally impaired.I don't learn easily, if you judge me by the world's measuring stick.What I do know is infinite joy in the simple things.I am not burdened as you are with the strife's and conflicts or a more complicated life.My gift to you is to grant you the freedom to enjoy things as a child,to teach you how much your arms around me mean, to give you love.I give you the gift of simplicity.I am the child who is mentally impaired.
I am the child who is mentally impaired.I don't learn easily, if you judge me by the world's measuring stick.What I do know is infinite joy in the simple things.I am not burdened as you are with the strife's and conflicts or a more complicated life.My gift to you is to grant you the freedom to enjoy things as a child,to teach you how much your arms around me mean, to give you love.I give you the gift of simplicity.I am the child who is mentally impaired.
Tuesday, May 31, 2011
Magnets are in!!!!
 | Hi! The magnets are in!!!!!! Please help spread the word about leukodystrophy. | ||||||||
| My son has leukodystrophy. I am asking for others to help spread the word about this rare, devastating disease that affects the white matter of the brain. Little is understood about leukodystrophy and most people have never heard of it before. It has been a struggle to get the testing my baby needs because insurance doesn’t cover many genetic tests. I contacted the United Leukodystrophy Foundation with the idea of making a magnet to help spread awareness. My husband brought my designs to EVIT (a vocational high school where he works). He also held a challenge for the graphic design... read more | ||||||||
Tuesday, May 24, 2011
Up-Lifting News:)
Some up-lifting news---Ryder has been doing awesome the past 3 days!!! He has stood up w/o support a few times and taken several steps. He has eaten Cheerios's and some meat without choking! He seems to be having a full conversation (of babbling) with us lately:) It is so odd to watch his ups and downs. I am sure glad he is having an up week though:)
I finally brought myself to watch Lorenzo's Oil. (True story of a boy with ADL). If you are interested--watch this movie. Heads up---the boy lived until he was 30 due to parents persistent fight! It is sad at times, but educational too. (To hard for me to watch movies about kids who suffer so I had to give away the ending for you!). Anyways, this movie gave me hope. I know it is right for me to go to nursing school. I think I will learn a lot to help Ryder and other kids. I also think I'll meet more doctors that can help as well! This movie is kind of like Rainman for people affected by autism. It is 1 story, but leukodystrophy has a wide array of symptoms. Each case is not the same. Ryder's leukodystrophy is not ADL and doesn't seem to be quickly progressing!
Daddy decided to give the boys a summer haircut. Ryder didn't sit still so Les ended up shaving his whole head!!! He looks sooo different! I think Les was jealous of all the hair, so he shaved all their heads to match his--hahaha!!! I gave Ryder a tattoo to match the new look:) I will attempt to add a picture:)
I finally brought myself to watch Lorenzo's Oil. (True story of a boy with ADL). If you are interested--watch this movie. Heads up---the boy lived until he was 30 due to parents persistent fight! It is sad at times, but educational too. (To hard for me to watch movies about kids who suffer so I had to give away the ending for you!). Anyways, this movie gave me hope. I know it is right for me to go to nursing school. I think I will learn a lot to help Ryder and other kids. I also think I'll meet more doctors that can help as well! This movie is kind of like Rainman for people affected by autism. It is 1 story, but leukodystrophy has a wide array of symptoms. Each case is not the same. Ryder's leukodystrophy is not ADL and doesn't seem to be quickly progressing!
Wednesday, May 18, 2011
Searching for the silver lining...
We spent the majority of the day at Ryder's neuro today----what an amazing doctor he is!!!! Before I get to the story- I really need to give props to Dr. Narayanan!!!! I have a lot of friends and family that are in the medical and educational field. As a parent, there is nothing more comforting then having a doctor/therapist/teacher who is not only smart and up-to-date with research, but also has bed side manner and shows compassion and understanding for our situation:) We haven't met many of these well rounded professionals, but we sure do appreciate them!!!
So, last info I heard was that the PMD testing came back normal. This doesn't necessarily mean he doesn't have PMD. The doctor still believes he has PM like disorder with the symptoms Ryder presents.
The past 2 weeks have been tough ones. Ryder has been falling a lot still, not wanting to use his walker, listing (leaning his head & body) to the right side and choking on liquids & foods. He was sick for a few days, but it doesn't explain the length of these bad days he has been having.
Dr. N (neuro) saw Ryder this morning for a regular follow up. First of all---Ryder has gained 2 pounds since his tubes in the last month & 1/2! He is a whopping 23lbs now:) The doctor video taped Ryder's nystagmus (eye movement) for educational purpose. It has been more noticeable lately. He also saw Ryder's tremors (spasticity). His body tone/core muscles continue to be weak. During the reflex test (where he hit his knee w/the thing-a-kabob:) Ryders opposite leg would react---so weird to watch! So when the doctor hit his right knee, Ry's left leg would react and vice-versa. The Dr. explained that newborns have this reaction, but as their mylenation develops, signals from the brain to the rest of the body mature. Due to Ryder's mylenation not developing properly, his reflex test remains that of a newborn. I really thought Ryder would be walking by now. After all of the therapy and his hard work (and my stubbornness), I believed he would walk. Now, I'm not sure if it's in the cards for him. I still have hope, but can accept if this isn't meant to be.
Dr. N asked if we would be interested in being part of a research study for white matter disorders & genetic testing. YES...YES...YES!!!!! I am excited about this study:) i called Les to come meet us at the hospital. They took Ryder, Les and my blood today to study all of the DNA & RNA. Okay---bare with me as I attempt to explain this. Ry has been going through testing tiny steps at a time to rule out specific leukodystrophies. Keep in mind, there are over 34 known to date and each type has several test themselves. So this study will eliminate the test by test that we have been doing and just lays out all of his DNA/RNA to be studied. The computer can compare about 4 million genes to rule out, while at least another 100,000 need to be reviewed by the research team for mutations, deletions, or duplications. I'm still trying to wrap my head around it all, but I hope I'm explaining it right;) Even though we are participating in this study, we most likely won't hear results for up to a year. Funds need to be raised and the treacherous process of sifting through all the genes needs to be done.
In the meantime, Dr. N referred Ryder for Children's Rehabilitation Services. His GI doctor wants to see him soon and conduct a swallow test. There is a concern that Ryder may be aspirating while drinking liquids. I had a melt down today just thinking about it. He is having a difficult time drinking or eating stuff with certain consistencies. I'm not sure if a feeding tube is in his future, but I will continue to live day by day and treasure who he is every single moment!
Most of you have heard I have been accepted into nursing school after 19months on a waiting list. I was on the waiting list before we knew about Ryder's condition. Now, I'm wondering if it is the right time. I will be consumed by school for 16 months. I quite my job to be with Ryder and be his advocate. I'm not sure if I'm ready to hand that over to someone else. Les is more than amazing with the boys, but I think it is my instinct to notice all the little things w/Ry that I have to point out to doctors, therapist and Les. What if that doesn't happen if I'm in school? Les thinks I need to go for it. At least we have support from family, but it's hard for me to let go of control I guess....
This post has gone on long enough:) Just a reminder to my AZ friends and family...Please join us this Saturday for the benefit concert in Queen Creek for a family with 2 kids affected by leukodystrophy.
Oh--1 more thing--my brother in law hooked us up with tickets this summer to Chicago!!!! Our whole family will be flying in to visit Les' sister & family in Wisconsin and then drive to Chicago to visit Auntie Cass. Les and I will attend the leukodystrophy conference, while Auntie Cassidy watches the kiddos:) We're SOOOOO happy for this opportunity!
Last thing---ULF magnets will be out very soon (within the month) so stay tune & please purchase one to spread awareness and fund research!
So, last info I heard was that the PMD testing came back normal. This doesn't necessarily mean he doesn't have PMD. The doctor still believes he has PM like disorder with the symptoms Ryder presents.
The past 2 weeks have been tough ones. Ryder has been falling a lot still, not wanting to use his walker, listing (leaning his head & body) to the right side and choking on liquids & foods. He was sick for a few days, but it doesn't explain the length of these bad days he has been having.
Dr. N (neuro) saw Ryder this morning for a regular follow up. First of all---Ryder has gained 2 pounds since his tubes in the last month & 1/2! He is a whopping 23lbs now:) The doctor video taped Ryder's nystagmus (eye movement) for educational purpose. It has been more noticeable lately. He also saw Ryder's tremors (spasticity). His body tone/core muscles continue to be weak. During the reflex test (where he hit his knee w/the thing-a-kabob:) Ryders opposite leg would react---so weird to watch! So when the doctor hit his right knee, Ry's left leg would react and vice-versa. The Dr. explained that newborns have this reaction, but as their mylenation develops, signals from the brain to the rest of the body mature. Due to Ryder's mylenation not developing properly, his reflex test remains that of a newborn. I really thought Ryder would be walking by now. After all of the therapy and his hard work (and my stubbornness), I believed he would walk. Now, I'm not sure if it's in the cards for him. I still have hope, but can accept if this isn't meant to be.
Dr. N asked if we would be interested in being part of a research study for white matter disorders & genetic testing. YES...YES...YES!!!!! I am excited about this study:) i called Les to come meet us at the hospital. They took Ryder, Les and my blood today to study all of the DNA & RNA. Okay---bare with me as I attempt to explain this. Ry has been going through testing tiny steps at a time to rule out specific leukodystrophies. Keep in mind, there are over 34 known to date and each type has several test themselves. So this study will eliminate the test by test that we have been doing and just lays out all of his DNA/RNA to be studied. The computer can compare about 4 million genes to rule out, while at least another 100,000 need to be reviewed by the research team for mutations, deletions, or duplications. I'm still trying to wrap my head around it all, but I hope I'm explaining it right;) Even though we are participating in this study, we most likely won't hear results for up to a year. Funds need to be raised and the treacherous process of sifting through all the genes needs to be done.
In the meantime, Dr. N referred Ryder for Children's Rehabilitation Services. His GI doctor wants to see him soon and conduct a swallow test. There is a concern that Ryder may be aspirating while drinking liquids. I had a melt down today just thinking about it. He is having a difficult time drinking or eating stuff with certain consistencies. I'm not sure if a feeding tube is in his future, but I will continue to live day by day and treasure who he is every single moment!
Most of you have heard I have been accepted into nursing school after 19months on a waiting list. I was on the waiting list before we knew about Ryder's condition. Now, I'm wondering if it is the right time. I will be consumed by school for 16 months. I quite my job to be with Ryder and be his advocate. I'm not sure if I'm ready to hand that over to someone else. Les is more than amazing with the boys, but I think it is my instinct to notice all the little things w/Ry that I have to point out to doctors, therapist and Les. What if that doesn't happen if I'm in school? Les thinks I need to go for it. At least we have support from family, but it's hard for me to let go of control I guess....
This post has gone on long enough:) Just a reminder to my AZ friends and family...Please join us this Saturday for the benefit concert in Queen Creek for a family with 2 kids affected by leukodystrophy.
Oh--1 more thing--my brother in law hooked us up with tickets this summer to Chicago!!!! Our whole family will be flying in to visit Les' sister & family in Wisconsin and then drive to Chicago to visit Auntie Cass. Les and I will attend the leukodystrophy conference, while Auntie Cassidy watches the kiddos:) We're SOOOOO happy for this opportunity!
Last thing---ULF magnets will be out very soon (within the month) so stay tune & please purchase one to spread awareness and fund research!
Tuesday, May 3, 2011
Latest results
The 3rd and final PMD test came back normal! On to the next leukodystrophy.....Each time I hear results I have such mixed emotions. Actually, I've been an emotional wreck the past 2 days!!! I've broke down crying during his therapy sessions. For some reason he has had a very difficult last few days. He has been unbalanced and falling a lot. His nystagmus is very apparent and his tremors where obvious. He has been choking a lot on his food as well. I think there is a place in the back of my mind watching for signs of the "regression" to start (characteristic in leukodystrophy.) It's a horrible thought and feeling to have, but when I watch him struggle so much like the past few days, I find myself wondering if this is it.
Ryder got his pediatric walker yesterday--I've never seen anything so little! I'll post a picture soon. He's doing well with it so far. He is working on how to turn with it now.
He continues to think he is 2 and give major attitude! Soooo funny (little stinker!) He is still my cuddle bug though:)
Hopefully tomorrow will be a better day and he will get his strength and steadiness back.
Ryder got his pediatric walker yesterday--I've never seen anything so little! I'll post a picture soon. He's doing well with it so far. He is working on how to turn with it now.
He continues to think he is 2 and give major attitude! Soooo funny (little stinker!) He is still my cuddle bug though:)
Hopefully tomorrow will be a better day and he will get his strength and steadiness back.
Saturday, April 30, 2011
Benefit Concert & how you can help
Ryder is definitely approaching 2!!! He had his first time-out today:) He is throwing full on tantrums and hitting/scratching Mommy! As a parent, I never thought I'd be so happy to see this temper in my baby--but I am!!! He is expressing himself--and I love it!!!!!!!
He loves to dance and is taking about 3-5 steps off the couch. I am still waiting for him to talk...how awesome it would be to for him to say Mama and Dada!!!
His last PMD test (3rd out of 4) has been paid for THANKFULLY, by the PMD Foundation. It has been such a struggle getting these genetic test done and paid for, because insurance won't cover them!!!! UUUGH! I was supposed to hear this week about the results- but haven't (after 3 phone calls---another loooong story!!!)
My friend has 2 children with Leukodystrophy. After several years of going from doctor to doctor and trying to get the test covered, they may have reached a break though in finding which Leukodystrophy her children have. As a mother, this is good and devastating news together. There is no cure and our children's fate seems inevitable. We are so very blessed to have these amazing kiddos in our lives, but it is heartbreaking to watch them suffer and struggle. We need to spread the word about Leukodystrophy and help fund research for the cause.
My friend is having a benefit concert for her children Bryce and Annalise on May 21st. It is in Queen Creek. I'll share the link. I've had so many friends, family, coworkers, therapist and volunteers ask how they can help---this is it-- show your support please, be there for us! This concert is only $7!!! Medical bills, equipment, therapist and education really add up quickly! We LOVE our kids sooo very much but need your support to help them have the best life possible. So come support us, enjoy some awesome music and show us your love!!!
He loves to dance and is taking about 3-5 steps off the couch. I am still waiting for him to talk...how awesome it would be to for him to say Mama and Dada!!!
His last PMD test (3rd out of 4) has been paid for THANKFULLY, by the PMD Foundation. It has been such a struggle getting these genetic test done and paid for, because insurance won't cover them!!!! UUUGH! I was supposed to hear this week about the results- but haven't (after 3 phone calls---another loooong story!!!)
My friend has 2 children with Leukodystrophy. After several years of going from doctor to doctor and trying to get the test covered, they may have reached a break though in finding which Leukodystrophy her children have. As a mother, this is good and devastating news together. There is no cure and our children's fate seems inevitable. We are so very blessed to have these amazing kiddos in our lives, but it is heartbreaking to watch them suffer and struggle. We need to spread the word about Leukodystrophy and help fund research for the cause.
My friend is having a benefit concert for her children Bryce and Annalise on May 21st. It is in Queen Creek. I'll share the link. I've had so many friends, family, coworkers, therapist and volunteers ask how they can help---this is it-- show your support please, be there for us! This concert is only $7!!! Medical bills, equipment, therapist and education really add up quickly! We LOVE our kids sooo very much but need your support to help them have the best life possible. So come support us, enjoy some awesome music and show us your love!!!
Ragtime & Stride Piano Benefit Concert
| Time | Saturday, May 21 · 7:00pm - 8:30pm |
|---|---|
| Location | Queen Creek Performing Arts Center 22149 E Ocotillo Rd. Queen Creek, AZ 85142 |
Tuesday, April 12, 2011
Tubes were a success! Fundraising again...
Ryder has been in a great mood since he got tubes in his ears. I was surprised at how fast the surgery actually was! It took at the most 10 minutes before his ENT told us that everything went great. It took another 10 minutes before Ryder woke up from the anesthesia. The doctor told us Ryder had soooo much ear wax in his right ear that it took more time to clean that then actually putting in the tubes!
Since the tubes, Ryder has been in a wonderful mood! We have noticed that Ryder has quit an appetite lately--YAY!!! He is still picky, but eats some new things. He LOVES yogurt now and I haven't noticed a reaction--so far so good! He's also tried some meats, lasagna and cheezits. He always seems hungry (signs more and points to his high chair:) Ryder loves to dance. He used to need music close by him, but lately, he will dance when he HEARS music anywhere in the house:)
Ryder's PT suggested high tops instead of AFO's at his age. Grandma bought him some nice, flexible high tops from Stride Rite. He LOVES them!!! We are working on dressing skills in OT. He doesn't like to put on shorts, but if I show him his shoes..he is motivated:) We have been going on a walk outside daily. A few days ago Ryder started walking holding only one of my hands--YAY!!! He is still unsteady, but this was a major step forward for him!!!!
After getting Ryder's last lab results from his GI doctor, his liver enzymes are normal!!!!????? It is mystifying! They have been elevated for over 3 months. He needed an ultrasound and possible liver biopsy since the elevation continued to elevate (slowly) and then the last lab--wa-la--they are normal!!!!!!
The vote is in on the ulf. symbol I told you about last blog!!!! Les took my designs to Evit and had the graphic design program put them in graphic form. He also had a competition with the students to come up with an original symbol. They studied leukodystrophy and had some amazing designs for the cause. I got over a hundred designs to pick from. I forwarded 5 of my favorite to the founder of the ULF. After talking with her last week, we decided on one----you will see it soon:) It will be sold as magnets, on shirts, etc--to raise funds for research on leukodystrophy!!!! I am soooo happy to be a part of this and know it will make a great contribution to reasearch.
I have been trying to make money for Ryder, Les and I to attend the United Leukodystrophy Foundation seminar in Chicago this July. I have been selling my crafts (hair accessories, handmade dresses +more) on etsy. Check it out at www. LiveBeautifulbyDee.etsy.com (All profits go towards funds for Ryder).
I also recently became a consultant for Thirty-One. Check out my site at www. mythirtyone.com/Hauer
I love their products!!!! They range from organizational totes, purses, travel gear, a new kids line, picnic/out & about supplies, stationary and a lot more!!! Check out the catalog on my site. I get 25% commission from sales-which all goes towards Ryder. If you are interested in hosting a party or having a catalog party(I'll let you borrow a travel party kit to go for 2 weeks--you collect orders and get lots of freebies yourself-meanwhile helping Ryder!!!!! Either visit my site or call me if interested in helping out this way:)
Since the tubes, Ryder has been in a wonderful mood! We have noticed that Ryder has quit an appetite lately--YAY!!! He is still picky, but eats some new things. He LOVES yogurt now and I haven't noticed a reaction--so far so good! He's also tried some meats, lasagna and cheezits. He always seems hungry (signs more and points to his high chair:) Ryder loves to dance. He used to need music close by him, but lately, he will dance when he HEARS music anywhere in the house:)
Ryder's PT suggested high tops instead of AFO's at his age. Grandma bought him some nice, flexible high tops from Stride Rite. He LOVES them!!! We are working on dressing skills in OT. He doesn't like to put on shorts, but if I show him his shoes..he is motivated:) We have been going on a walk outside daily. A few days ago Ryder started walking holding only one of my hands--YAY!!! He is still unsteady, but this was a major step forward for him!!!!
After getting Ryder's last lab results from his GI doctor, his liver enzymes are normal!!!!????? It is mystifying! They have been elevated for over 3 months. He needed an ultrasound and possible liver biopsy since the elevation continued to elevate (slowly) and then the last lab--wa-la--they are normal!!!!!!
The vote is in on the ulf. symbol I told you about last blog!!!! Les took my designs to Evit and had the graphic design program put them in graphic form. He also had a competition with the students to come up with an original symbol. They studied leukodystrophy and had some amazing designs for the cause. I got over a hundred designs to pick from. I forwarded 5 of my favorite to the founder of the ULF. After talking with her last week, we decided on one----you will see it soon:) It will be sold as magnets, on shirts, etc--to raise funds for research on leukodystrophy!!!! I am soooo happy to be a part of this and know it will make a great contribution to reasearch.
I have been trying to make money for Ryder, Les and I to attend the United Leukodystrophy Foundation seminar in Chicago this July. I have been selling my crafts (hair accessories, handmade dresses +more) on etsy. Check it out at www. LiveBeautifulbyDee.etsy.com (All profits go towards funds for Ryder).
I also recently became a consultant for Thirty-One. Check out my site at www. mythirtyone.com/Hauer
I love their products!!!! They range from organizational totes, purses, travel gear, a new kids line, picnic/out & about supplies, stationary and a lot more!!! Check out the catalog on my site. I get 25% commission from sales-which all goes towards Ryder. If you are interested in hosting a party or having a catalog party(I'll let you borrow a travel party kit to go for 2 weeks--you collect orders and get lots of freebies yourself-meanwhile helping Ryder!!!!! Either visit my site or call me if interested in helping out this way:)
Thursday, March 31, 2011
Carpet & "more"
Ryder LOVES the new carpet!!!! He has already taken 3 steps and walks around holding the wall and other objects/toys, which he has never done before. He loves to roll around and snuggle with the carpet and bear crawls too!!! We are so very grateful to the Anderson Family for this great blessing:)
I am watching a precious newborn girl for the next 2 months (2x a week). Today was our first day and boy was Ryder jealous!!!! Luckily he had therapies and lots of attention that he was at the center of:) He was sweet though. When the baby cried, he'd point and crawl to her until I held her and she stopped crying--then he was happy and went on with his playing:) He refused to take any naps with her in the house (he usually takes 3 naps a day still!). When she left at 4:30, Ryder crashed for several hours--it was sooo funny!!!
Ryder is signing more all the time now!!! He is starting to imitate some sounds. I am so excited for next week when he gets the tubes in his ears. I really think it will help with speech & having less ear infections. Hopefully it will help with his balance too--we'll see:)
I am watching a precious newborn girl for the next 2 months (2x a week). Today was our first day and boy was Ryder jealous!!!! Luckily he had therapies and lots of attention that he was at the center of:) He was sweet though. When the baby cried, he'd point and crawl to her until I held her and she stopped crying--then he was happy and went on with his playing:) He refused to take any naps with her in the house (he usually takes 3 naps a day still!). When she left at 4:30, Ryder crashed for several hours--it was sooo funny!!!
Ryder is signing more all the time now!!! He is starting to imitate some sounds. I am so excited for next week when he gets the tubes in his ears. I really think it will help with speech & having less ear infections. Hopefully it will help with his balance too--we'll see:)
Tuesday, March 15, 2011
Appointments today & More
Busy day..
1st a trip to a new eye doctor. He said Ryder has 20/40 vision (the best he could tell on an 18 mo old at least!) He has a stigmatism & nystagmus (which we knew). He thinks Ryder will probably be prescribed glasses on his next visit in July. I think he would look pretty stinkin cute in glasses---just not sure how you keep those on a baby?!
Next stop--hair cut!!! Oh My CUTENESS!!!!!!! I will post pictures! I want to eat him up:)
Then, off to the ENT. Ryder is scheduled to have tubes put in his ears on April 8th. One ear the dr. said was completely covered in hard earwax & couldn't see. The other eardrum was sunken in. He said it was like someone on an airplane's would be, but it doesn't "pop." With his repeated ear infections and this news, I think tubes will help a lot. Poor guy hears sounds that are muffled most of the time :( This just might improve his speech and following simple directions---we can only hope so:)
We should be having carpeting installed within the next week (or 2 at the most)!!!! THANKS SOOOO very much to the Anderson family who is helping us out with this!!!! I can't tell you how much of a blessing this is for us!!!! Ryder bumps his head on the concrete so much and gets bruises and his knees are so dry from it (not to mention how hard it is to clean!)
Uncle Eddie moved out this past weekend....YAY (for us--luv you brother!) Now all 5 of us aren't in 1 room sharing 1 closet--uugh! The boys have their own room now. I see sleep in my near future:)
We still have the GI appointment, Case Manager meeting and lab work (repeat) in the next few days.
Some fun news:
I emailed the United Leukodystrophy Foundation (ulf) several weeks ago regarding ribbons, symbols, shirts etc.. for leukodystrophy awareness. I haven't found a universal sign for leukodystrophy (since it is rare), but I want to spread awareness. When you see a pink ribbon- you think of Breast Cancer. When you see a puzzle piece- you think of Autism. There is currently nothing for leukodystrophy. Anyhow, I have designed a ribbon & picture for leukodystrophy. The president/founder of the ULF called me personally and is very interested in seeing my design:) Who knows...ya'll might be seeing it soon to spread awareness:)
1st a trip to a new eye doctor. He said Ryder has 20/40 vision (the best he could tell on an 18 mo old at least!) He has a stigmatism & nystagmus (which we knew). He thinks Ryder will probably be prescribed glasses on his next visit in July. I think he would look pretty stinkin cute in glasses---just not sure how you keep those on a baby?!
Next stop--hair cut!!! Oh My CUTENESS!!!!!!! I will post pictures! I want to eat him up:)
Then, off to the ENT. Ryder is scheduled to have tubes put in his ears on April 8th. One ear the dr. said was completely covered in hard earwax & couldn't see. The other eardrum was sunken in. He said it was like someone on an airplane's would be, but it doesn't "pop." With his repeated ear infections and this news, I think tubes will help a lot. Poor guy hears sounds that are muffled most of the time :( This just might improve his speech and following simple directions---we can only hope so:)
We should be having carpeting installed within the next week (or 2 at the most)!!!! THANKS SOOOO very much to the Anderson family who is helping us out with this!!!! I can't tell you how much of a blessing this is for us!!!! Ryder bumps his head on the concrete so much and gets bruises and his knees are so dry from it (not to mention how hard it is to clean!)
Uncle Eddie moved out this past weekend....YAY (for us--luv you brother!) Now all 5 of us aren't in 1 room sharing 1 closet--uugh! The boys have their own room now. I see sleep in my near future:)
We still have the GI appointment, Case Manager meeting and lab work (repeat) in the next few days.
Some fun news:
I emailed the United Leukodystrophy Foundation (ulf) several weeks ago regarding ribbons, symbols, shirts etc.. for leukodystrophy awareness. I haven't found a universal sign for leukodystrophy (since it is rare), but I want to spread awareness. When you see a pink ribbon- you think of Breast Cancer. When you see a puzzle piece- you think of Autism. There is currently nothing for leukodystrophy. Anyhow, I have designed a ribbon & picture for leukodystrophy. The president/founder of the ULF called me personally and is very interested in seeing my design:) Who knows...ya'll might be seeing it soon to spread awareness:)
Tuesday, March 8, 2011
18 months
18 month check up- Can you believe he is 18 months already!!!
Ryder has lost a pound and weighs in at 21.15- 6%
height-31.5- 30%
head-46.7- 10%
I need to schedule an appointment for an ENT, optomologist, & nutritionist.
He has labs for allergies & PMD test pending
GI & Metabolic/Genetic Specialist appointments coming up--( 8 doctors & 5 therapist---can this baby see any more specialist ???)
He still hasn't been feeling well--vomiting a lot and diarrhea--yuck!
I am in search for a new speech therapist (the one we have now is nice, but not a good fit for Ryder)
I saw a kidney specialist yesterday and she said I am a carrier of Al Ports syndrome (runs on my dad's side of the family) I've had blood (last 7 yrs)& now protein in my urine -which isn't a good sign. I'm still confused about this since I don't believe my dad has Al Port's symptoms, but know my uncle (his twin) and several other family member's suffered/died from this syndrome. I was devastated yesterday when the doctor said all 3 of my boys have a 50% chance of getting Al Port's syndrome. I have enough on my plate with Ry's health problems, but don't want to imagine the other two (plus Ry) having Kidney issues!!!
This journey really has been up and down for us/me (emotionally, physically, financially). I feel so very blessed in my life and with my beautiful boys, but struggle w/ all this medical stuff and want to do the best I can for my family. It's in God's hands and I can only pray I have the strength to follow HIS path and where it takes us!
Ryder has lost a pound and weighs in at 21.15- 6%
height-31.5- 30%
head-46.7- 10%
I need to schedule an appointment for an ENT, optomologist, & nutritionist.
He has labs for allergies & PMD test pending
GI & Metabolic/Genetic Specialist appointments coming up--( 8 doctors & 5 therapist---can this baby see any more specialist ???)
He still hasn't been feeling well--vomiting a lot and diarrhea--yuck!
I am in search for a new speech therapist (the one we have now is nice, but not a good fit for Ryder)
I saw a kidney specialist yesterday and she said I am a carrier of Al Ports syndrome (runs on my dad's side of the family) I've had blood (last 7 yrs)& now protein in my urine -which isn't a good sign. I'm still confused about this since I don't believe my dad has Al Port's symptoms, but know my uncle (his twin) and several other family member's suffered/died from this syndrome. I was devastated yesterday when the doctor said all 3 of my boys have a 50% chance of getting Al Port's syndrome. I have enough on my plate with Ry's health problems, but don't want to imagine the other two (plus Ry) having Kidney issues!!!
This journey really has been up and down for us/me (emotionally, physically, financially). I feel so very blessed in my life and with my beautiful boys, but struggle w/ all this medical stuff and want to do the best I can for my family. It's in God's hands and I can only pray I have the strength to follow HIS path and where it takes us!
Thursday, March 3, 2011
My life just became a little easier--Yay:)
Ryder was FINALLY approved for Mercy Care as a second health insurance!!!!! This means we won't be piling on any more crazy doctor bills-YAY YAY YAY!!!! That gets rid of some stress:) Another plus is that it will take hours off my crazy schedule since I don't have to search for funding for his genetic tests that his primary insurance won't cover!! That also means the 3rd round of PMD testing is covered--yeppers, I'm a happy Mama!!
Ryder, however, isn't so happy. He is recovering from 2 ear infections, a yucky cough (bronchitis), a viral rash, fever & runny nose. His pediatrician put him on antibiotics last Wednesday. We went back to the doctors today because the antibiotics caused a yeast infection....not so fun for poor little Ryder!
Today was the first day in 2 weeks that he seemed happy and did awesome in therapy! When his DSI therapist asked him to roll the ball to mommy, he turned 1/2 way around to find me and gave me the ball. Then she asked him to give the ball to Noah and he turned around and found him too!!! He has never done this before and hasn't been able to "find" or point to any of us--so this was a BIG deal!
Ryder, however, isn't so happy. He is recovering from 2 ear infections, a yucky cough (bronchitis), a viral rash, fever & runny nose. His pediatrician put him on antibiotics last Wednesday. We went back to the doctors today because the antibiotics caused a yeast infection....not so fun for poor little Ryder!
Today was the first day in 2 weeks that he seemed happy and did awesome in therapy! When his DSI therapist asked him to roll the ball to mommy, he turned 1/2 way around to find me and gave me the ball. Then she asked him to give the ball to Noah and he turned around and found him too!!! He has never done this before and hasn't been able to "find" or point to any of us--so this was a BIG deal!
Tuesday, February 15, 2011
75% happy w/news--kinda, but 100% CONFUSSED!
Results are in:
1. white blood counts look good
2. liver enzymes still elevated, but haven't changed in a few months so we will wait on a liver biopsy (great news for me!)
3. The 1 gene they tested is normal, so it might not be PMD. It was explained to me that 75% of children with PMD ( just 1 form of leukodystrophy) get a diagnosis with this 1 gene test that Ryder had (looking for deletions), 20% are diagnosised after testing the same gene for mutations and 5% (for duplications I believe). So the 1 test for deletions came back normal.....
So good news, bad news and no new news all rolled up in one I guess!
I'm still concerned about all of the pieces to Ryder's health mystery....
nystagmus
hypotonic
abnormal white brain matter
ataxia
tremor (mainly hands & arms)
elevated liver enzymes (doctors aren't sure if his liver or muscle tissues are causing this)
enlarged lymph node (since birth/remains unchanged..but white blood counts are good)
developmental delays- no speech, can't stand independently or walk, unbalanced and still can't look at, point to/find Mommy and Daddy.
Ryder is 17months old. Most of the time he is a happy boy and has developed an attitude w/ giving dirty looks an all to get his point across!
I guess I need to process all this info for a few days to decide the next steps and talk with the doctors about what they think. Any suggestions from anyone?
1. white blood counts look good
2. liver enzymes still elevated, but haven't changed in a few months so we will wait on a liver biopsy (great news for me!)
3. The 1 gene they tested is normal, so it might not be PMD. It was explained to me that 75% of children with PMD ( just 1 form of leukodystrophy) get a diagnosis with this 1 gene test that Ryder had (looking for deletions), 20% are diagnosised after testing the same gene for mutations and 5% (for duplications I believe). So the 1 test for deletions came back normal.....
So good news, bad news and no new news all rolled up in one I guess!
I'm still concerned about all of the pieces to Ryder's health mystery....
nystagmus
hypotonic
abnormal white brain matter
ataxia
tremor (mainly hands & arms)
elevated liver enzymes (doctors aren't sure if his liver or muscle tissues are causing this)
enlarged lymph node (since birth/remains unchanged..but white blood counts are good)
developmental delays- no speech, can't stand independently or walk, unbalanced and still can't look at, point to/find Mommy and Daddy.
Ryder is 17months old. Most of the time he is a happy boy and has developed an attitude w/ giving dirty looks an all to get his point across!
I guess I need to process all this info for a few days to decide the next steps and talk with the doctors about what they think. Any suggestions from anyone?
Tuesday, February 1, 2011
The Brave Little Soul
I cant sleep (again tonight) even though I am exhausted! My mind is racing and still no word on any results. Ryder got a DSI therapist today and he is now at 4 hours a week of therapy. I am staying organized and on top of everything. The therapist are all wonderful with different strategies and ideas- I love that and Ryder can only benefit from a broad prospective of ideas to help him:) So far, he has a good team helping him. It is hard to explain leukodystrophy to the therapist though. It is so rare--even most doctors aren't knowledgeable about this horrible disorder. I have taught Special Education (ED, Autism, LD, BD) for 11 years plus another 4 years of in-home Hab work. I have never heard of leukodystrophy until now. I was very passionate about teaching children with autism for so many years. As a teacher, I am trying to figure out the best way to teach children with leukodystrophy. Without the true understanding of this disorder, I feel a teacher may get frustrated with the regressive nature of leukodystrophy. They may not understand that one day the child may walk or have a skill and lose it the next. They may call the child lazy or manipulative. I will understand Ryder and how he learns and most importantly maintains his skills. As a parent with a very special child, I want to maintain his current skills for as long as I can. Of course we will work on progressing his skills. Every day brings new ups and downs so far. I have hope...but more importantly--I have acceptance. Ryder is so very amazing and I wouldn't change a thing!!!! My family is my world!!!! Since I do have an education background, I want to start developing a way to teach children affected by leukodystrophy--it is a goal in progress:)
Well, I am rambling, so I will attempt to go to bed--again! I will leave you with this awesome email I received from a friend that I like to look at now and again:)
I'll keep you updated on results (when they FINALLY come:)
The Brave Little Soul
John Alessi
Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” she asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.” The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity." Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you. God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through her suffering and God’s strength, she unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.
John Alessi
Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” she asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.” The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity." Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you. God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through her suffering and God’s strength, she unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.
Wednesday, January 12, 2011
Roller Coaster Week--ready for fun:)
This is already turning into a looonng week and it is only Wednesday-ugh! We are excited to go play in the snow with some friends this weekend!
Timeline.....
Last Wednesday, the neuro I scheduled an appointment with in Sept. for March( then persistently got it moved to Feb.) called to tell me the dr. won't be in that day so the next appointment I could get with him was June---YES!!! REALLY JUNE--after a 5 month wait already!! Wasn't happy to say the least....
After a lot of thought, prayer and research, I have decided to take Ryder to a different neurologist at Barrows. This decision was based on the fact that the new neuro and Dr. Aleck (who is amazing& Ryder's Genetic/Metabolism Specialist) are co-directors of a clinic for neuro-genetic disorders. This can only turn out positive in my opinion--Dr. Aleck's office has worked so wonderful with me and I trust his judgement. A doctor he works so well with will more likely be a better addition to Ryder's team. Maybe this was an unanswered prayer since I've been wanting to have Ryder see Dr. Bodenstiener so badly. His appointment will be in March now.
Thursday wasn't much better. I got a call that the researchers lab that was interested in funding Ryder's PMD test wouldn't fund the test and Dr. Aleck's office couldn't get ahold of the PMD Foundation. I felt as though I was back at square 1 with this testing!!! I called the researcher's husband at home, the foundation number and e-mailed him. On Friday, Mr. Hobson returned my call. He is such a pleasant man!!! I spoke with him for about an hour. I am more than grateful for his time, wisdom and listening to me:) He told me his wife's lab won't be able to fund the testing, but the PMD foundation will---RELIEF!!! I learned a lot from our conversation. For instance- a group of 100 neurologist were recently given a true case study of a child with leukodystrophy and asked to diagnosis the patient based on symptoms, MRI's and basically a full work up on the child. Only 1 of the neurologist made the right diagnosis!!! Scary--and proof on how rare and misunderstood leukodystrophy really is.
Fast forward to Saturday...Ryder was very cranky.
Sunday night--lots of vomiting:(
Monday- tugging at his ear
Tuesday- GI appointment at PCH. Les came with me to this (right after my uro dr. app--possible kidney problems--which is another story--I'll stick to Ryder on this blog!!) I really liked the GI doctor! He was insightful and I feel, reliable. He did tell us, Ryder's condition is rare and he needed to further study GI issues that may result from leukodystrophy. I appreciated his honesty. Some insight he gave his--Ryder's liver enzymes are elevated, and continue to elevate. However, at this point the elevation is not of a high concern. The fact that the #'s keep rising means that we need to look into matters further, however, his liver isn't going to shut down really soon. He ordered more labs to test these enzymes. He isn't sure if the ALT & AST elevations are being released from the liver itself or muscle tissue. I pointed out to him the swollen lympth node on his neck that I've pointed out to every single doctor he has seen. I have always felt it's not normal, but the doctors have passed it off as being because he was getting over being sick and not a big deal. The GI said it may be swollen when he is sick, but should go away. This lump has been there since birth. Ryder had lab work yesterday that consisted of blood count and liver enzymes. He will also have an abdominal CT scan. Depending on the outcome of liver enzymes, he may need a liver biopsy ( I'm really hoping this isn't the case!)
When we got home after the GI the PMD order had arrived in the mail.
This morning after a 2 and 1/2 hr. ordeal and some tears (Ryder and I) we finally got the PMD test done!!! It was another blood test, but we have been through the ringer and back to get this test! I think that is why I'm so anxious about the results. It has been over a month to find funding for this test, and weeks before studying about PMD and talking to the insurance company. Now that it's done....I DON'T want Ryder to have PMD, but I do want answers.....I want to go to the next step to help him. If he has PMD... there is a foundation and a support group and researchers interested in Ryder. If not--he'll continue to have an undiagnosed form of leukodystrophy...... We can only wait and see.
Right now (after the blood work this a.m.) Les and Ryder are at the pediatrician to check on his ears/throat. Hope it's not another ear infection, but want to catch it before our Flagstaff trip:)
Ryder is getting OT, PT & Speech currently once a week. He was finally picked up by AHCCCS, so hoping medical bills won't be as crazy as they have been.
The rest of the family is doing pretty well. I had a good conversation with a close friend about religion. I have read some great books- The Shack, Heaven is for Real, & A Christmas Sweater. I'm getting ready to read the bible. I do have a strong faith, but will continue to strengthen my relationship with God. Talking to my friend about prayer, she gave me a new perspective to pray for guidance in finding people/ doctors to help Ryder. My experience with finding the right doctors has been such a struggle. I've always prayed for strength, but I will now also pray for guidance--thanks Carrie:)
Will let everyone know when lab results come back.
Timeline.....
Last Wednesday, the neuro I scheduled an appointment with in Sept. for March( then persistently got it moved to Feb.) called to tell me the dr. won't be in that day so the next appointment I could get with him was June---YES!!! REALLY JUNE--after a 5 month wait already!! Wasn't happy to say the least....
After a lot of thought, prayer and research, I have decided to take Ryder to a different neurologist at Barrows. This decision was based on the fact that the new neuro and Dr. Aleck (who is amazing& Ryder's Genetic/Metabolism Specialist) are co-directors of a clinic for neuro-genetic disorders. This can only turn out positive in my opinion--Dr. Aleck's office has worked so wonderful with me and I trust his judgement. A doctor he works so well with will more likely be a better addition to Ryder's team. Maybe this was an unanswered prayer since I've been wanting to have Ryder see Dr. Bodenstiener so badly. His appointment will be in March now.
Thursday wasn't much better. I got a call that the researchers lab that was interested in funding Ryder's PMD test wouldn't fund the test and Dr. Aleck's office couldn't get ahold of the PMD Foundation. I felt as though I was back at square 1 with this testing!!! I called the researcher's husband at home, the foundation number and e-mailed him. On Friday, Mr. Hobson returned my call. He is such a pleasant man!!! I spoke with him for about an hour. I am more than grateful for his time, wisdom and listening to me:) He told me his wife's lab won't be able to fund the testing, but the PMD foundation will---RELIEF!!! I learned a lot from our conversation. For instance- a group of 100 neurologist were recently given a true case study of a child with leukodystrophy and asked to diagnosis the patient based on symptoms, MRI's and basically a full work up on the child. Only 1 of the neurologist made the right diagnosis!!! Scary--and proof on how rare and misunderstood leukodystrophy really is.
Fast forward to Saturday...Ryder was very cranky.
Sunday night--lots of vomiting:(
Monday- tugging at his ear
Tuesday- GI appointment at PCH. Les came with me to this (right after my uro dr. app--possible kidney problems--which is another story--I'll stick to Ryder on this blog!!) I really liked the GI doctor! He was insightful and I feel, reliable. He did tell us, Ryder's condition is rare and he needed to further study GI issues that may result from leukodystrophy. I appreciated his honesty. Some insight he gave his--Ryder's liver enzymes are elevated, and continue to elevate. However, at this point the elevation is not of a high concern. The fact that the #'s keep rising means that we need to look into matters further, however, his liver isn't going to shut down really soon. He ordered more labs to test these enzymes. He isn't sure if the ALT & AST elevations are being released from the liver itself or muscle tissue. I pointed out to him the swollen lympth node on his neck that I've pointed out to every single doctor he has seen. I have always felt it's not normal, but the doctors have passed it off as being because he was getting over being sick and not a big deal. The GI said it may be swollen when he is sick, but should go away. This lump has been there since birth. Ryder had lab work yesterday that consisted of blood count and liver enzymes. He will also have an abdominal CT scan. Depending on the outcome of liver enzymes, he may need a liver biopsy ( I'm really hoping this isn't the case!)
When we got home after the GI the PMD order had arrived in the mail.
This morning after a 2 and 1/2 hr. ordeal and some tears (Ryder and I) we finally got the PMD test done!!! It was another blood test, but we have been through the ringer and back to get this test! I think that is why I'm so anxious about the results. It has been over a month to find funding for this test, and weeks before studying about PMD and talking to the insurance company. Now that it's done....I DON'T want Ryder to have PMD, but I do want answers.....I want to go to the next step to help him. If he has PMD... there is a foundation and a support group and researchers interested in Ryder. If not--he'll continue to have an undiagnosed form of leukodystrophy...... We can only wait and see.
Right now (after the blood work this a.m.) Les and Ryder are at the pediatrician to check on his ears/throat. Hope it's not another ear infection, but want to catch it before our Flagstaff trip:)
Ryder is getting OT, PT & Speech currently once a week. He was finally picked up by AHCCCS, so hoping medical bills won't be as crazy as they have been.
The rest of the family is doing pretty well. I had a good conversation with a close friend about religion. I have read some great books- The Shack, Heaven is for Real, & A Christmas Sweater. I'm getting ready to read the bible. I do have a strong faith, but will continue to strengthen my relationship with God. Talking to my friend about prayer, she gave me a new perspective to pray for guidance in finding people/ doctors to help Ryder. My experience with finding the right doctors has been such a struggle. I've always prayed for strength, but I will now also pray for guidance--thanks Carrie:)
Will let everyone know when lab results come back.
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