The fact that no one has reponded to Melissa post worries me. Where is everyone? I hope doing well and staying out of hospitals! I hope all are enjoying the beautiful fall colors that are surrounding, and getting the chance to crunch some leaves.
I come to you with a serious issue that has me worried. MyJonah has a chronic lung disaes called non CF-Bronchiectasis. If you are familiar with CF its the lung part of the disease that Jonah has. Anyways, on Saturday Jonah was sitting at his high chair and I was sitting kiddy corner at the kitchen table. I noticed he stopped drumming with his rattle and I looked up at him and saw his eyes roll to the back of his head. Then he looked normal again. Since Sat this has happened another 2 time. I didn't think much of it because he has been head banging so much I thought maybe well, I dont know what I thought. Last night I was serving dinner and my husband asked why J was doing that and I dropped the fork I was holding to run to see if J was still doing it. I never mentioned it to my husband before that because I thought it wasnt a big deal. But once my husband saw it , it validated things I was thinking and I imedietly called the home health nurse. SHe came by this morning and of course Jonah did not do it for her, but she said that it is deffinately neurilogical. She thinks he is having seizures. Im kinda freeked! Both of his drs have called to schedual an EEG, now we are waiting to hear back from that department. Has any of your kids ever had a seizure like this, where they just go into a daze then the eyes roll back then they come back too? He does not shake or anything like that. I am so worried. Please let me know if any of this might be familiar to you. I really hope he is not seizing now. How much more can one mom take?
Wednesday, October 21, 2009
Tuesday, October 6, 2009
Are we all this busy??
I haven't posted on here in a really long time. It has been a wild and crazy few months for us. I am wondering how many of you are feeling like that too?
My family is doing good. Josh has been keeping me on my toes. We have several appointments going on in addition to all his therapy. Then you add in his G-tube placement at the beginning of summer, with all the complications we had.... and here we are 4 months later! Our most concerning problem right now is Josh's lack of sleep. We saw the great Dr. Pfeffer a couple weeks ago and are waiting for a sleep study to be done. I am very tired since he sleeps about 1-2 hour stretches.... it's awful. He moans, whines, talks.... ect. So I hope to get to the bottom of that soon.
I really hope all is well with all of you! I have some of you ladies' personal blogs that I follow, so I know what some of you have been up to. But not everyone. I really hope that you are doing well.
My family is doing good. Josh has been keeping me on my toes. We have several appointments going on in addition to all his therapy. Then you add in his G-tube placement at the beginning of summer, with all the complications we had.... and here we are 4 months later! Our most concerning problem right now is Josh's lack of sleep. We saw the great Dr. Pfeffer a couple weeks ago and are waiting for a sleep study to be done. I am very tired since he sleeps about 1-2 hour stretches.... it's awful. He moans, whines, talks.... ect. So I hope to get to the bottom of that soon.
I really hope all is well with all of you! I have some of you ladies' personal blogs that I follow, so I know what some of you have been up to. But not everyone. I really hope that you are doing well.
answers about cord blood.
Yesterday we visited the neurosciences clinic at Primary Children's. Our regular Neurologist at Primary's referred us there when we asked her how to find out current and accurate information on the use of umbilical cord blood in treating cerebral palsy.
We told them what we were coming for when we made the appointment, but apparently the Doc didn't get the memo. He was a real nice guy, and took his time in asking all the questions about MK's history, carefully looking up lab reports, and test results on the computer. But he looked like a deer in the headlights when we told him why we'd come. He said that he was just a resident working under Dr. So and So, and that he would run it by him. We waited in the room after that probably another half and hour or so and joked that they were probably 'googling' about cord blood so they'd have something to say to us. The sad thing is, I think we were right. Both doctors came back and talked in circles just restating MK's condition to us and telling us what we already told them, that it seems to be more of an issue of some sort of brain damage rather than a genetic condition....yada yada yada. They really had nothing to say, nor seemed to know anything about cord blood. They gave us a packet they printed out from a web site. (I had to giggle inside myself.)
I got better information about it last week when MK had a check up from another one of her doctors at primary's. I casually mentioned it while we were there. That doctor had just returned from a conference on the subject. She said that she has had numerous patients (mostly with spinal cord injuries rather than cp) who have been interested in cord blood, and many who have even tried to use it. According to her experience, and the information she'd learned at the conference - There is definitely potential there. But the technology just isn't totally ready yet. She said she felt that it would be worth while to harvest and store the blood, but that it's difficult to even put a time frame on how long we might have to hold on to it before the technology is ready. Maybe 10-20 years, who knows?! But she also cautioned - whatever you do - don't go to China or Mexico. She said she'd had patients who had done that, and while she didn't elaborate, she strongly and clearly implied that their efforts were a waste.
I think at this point, we are leaning towards harvesting and storing, but not totally sold yet. We'll be looking into the different companies that do it to check on prices and such. I'll keep you all posted on that.
A big thank you to Ann who left a comment with all the links to blogs and such about it. I've been particularly interested in following Cady's blog, who recieved cord blood for her CP as part of a study done at Duke University. I'll keep watching her progress. Thank you!
In the meantime, it's good to get some updates from some of you. I'm glad we all seem to be hanging in there. Good Luck with Halloween all!
We told them what we were coming for when we made the appointment, but apparently the Doc didn't get the memo. He was a real nice guy, and took his time in asking all the questions about MK's history, carefully looking up lab reports, and test results on the computer. But he looked like a deer in the headlights when we told him why we'd come. He said that he was just a resident working under Dr. So and So, and that he would run it by him. We waited in the room after that probably another half and hour or so and joked that they were probably 'googling' about cord blood so they'd have something to say to us. The sad thing is, I think we were right. Both doctors came back and talked in circles just restating MK's condition to us and telling us what we already told them, that it seems to be more of an issue of some sort of brain damage rather than a genetic condition....yada yada yada. They really had nothing to say, nor seemed to know anything about cord blood. They gave us a packet they printed out from a web site. (I had to giggle inside myself.)
I got better information about it last week when MK had a check up from another one of her doctors at primary's. I casually mentioned it while we were there. That doctor had just returned from a conference on the subject. She said that she has had numerous patients (mostly with spinal cord injuries rather than cp) who have been interested in cord blood, and many who have even tried to use it. According to her experience, and the information she'd learned at the conference - There is definitely potential there. But the technology just isn't totally ready yet. She said she felt that it would be worth while to harvest and store the blood, but that it's difficult to even put a time frame on how long we might have to hold on to it before the technology is ready. Maybe 10-20 years, who knows?! But she also cautioned - whatever you do - don't go to China or Mexico. She said she'd had patients who had done that, and while she didn't elaborate, she strongly and clearly implied that their efforts were a waste.
I think at this point, we are leaning towards harvesting and storing, but not totally sold yet. We'll be looking into the different companies that do it to check on prices and such. I'll keep you all posted on that.
A big thank you to Ann who left a comment with all the links to blogs and such about it. I've been particularly interested in following Cady's blog, who recieved cord blood for her CP as part of a study done at Duke University. I'll keep watching her progress. Thank you!
In the meantime, it's good to get some updates from some of you. I'm glad we all seem to be hanging in there. Good Luck with Halloween all!
Saturday, September 26, 2009
Been Awhile...
Hey Ladies. Looks like we're all resurfacing after a long summer. It's nice to hear from you again! Since I last posted my family has relocated to Atlanta, gotten settled, and started school. Overall we've had great experiences here and can't complain. Unfortunately the Early Intervention program here in GA is lacking. We had a discussion about this I think back in June. R is only allowed one therapist at a time, they evaluate her and decide her "primary need" and that is the therapy we receive. We can request for supplemental therapy if she qualifies for other services, but it will all need to be paid out of pocket and even then they will only provide it once a month.
Right now R's 'primary need' is Physical Therapy and her therapy will begin next Wednesday (yes, it's taken over 3 months to get services started here). Since June and until her reassessment in January I am doing all her Speech Therapy. I'm grateful J had such extensive therapy because I feel (somewhat) confident, but I won't lie... I'm completely overwhelmed and scared I'm going to miss something. I'm also punting as the Occupational Therapist and Dietician... and nurse. Totally different and somewhat scary not feeling like you have a legion of people looking out for you and your child. I'm sure our PT will be great, but, I'm sure you understand the panic that comes with making sure your child is getting everything they need.
Remember back in the spring when I said J "finally caught up?" Well, yaah, she did, and then she entered 1st grade. Ha. It's proving to be much harder on my cute J this year. Her brain damage affected the processing ability, which we already knew, but it's rearing it's ugly head as the concepts are getting harder and harder (math..reading...). They have her on the "Rescue Intervention Team" at school. She meets with a reading tutor once a day, has after school tutoring with her teacher once a week, and I do 45-60 minutes of remedial work with her at home each night. It's exhausting but I'm hoping it will help! The RIT team will be watching her for another 4-6 weeks if there isn't any progression, even with the increase in help, they will do more language development tests to see if they can nail exactly what part of the processing is tripping her up (dyslexia, auditory processing disorder, dyscalculia, etc)...and then write up a specific IEP. I feel confident and grateful for the charter school we chose to put J in. Her Elementary school only handles K-3 and they have an Early Intervention Specialist for each grade specifically. I'm working closely with the teacher in hopes to reinforce what she's learning in class.
Sooo things here are going well, just a little overwhelming. But what part of that is new with us and our cute kids huh? I guess my main concern about J -and maybe y'all can give me some suggestions- she's getting to the age where you KNOW you're not doing the same thing as your peers in your class. It takes her twice as long to do an assignment, she's singled out for tutoring, etc. I don't want her confidence to be affected. I can't control the way other kids react or treat her, but I can help her channel her confidence. Any thoughts?
Right now R's 'primary need' is Physical Therapy and her therapy will begin next Wednesday (yes, it's taken over 3 months to get services started here). Since June and until her reassessment in January I am doing all her Speech Therapy. I'm grateful J had such extensive therapy because I feel (somewhat) confident, but I won't lie... I'm completely overwhelmed and scared I'm going to miss something. I'm also punting as the Occupational Therapist and Dietician... and nurse. Totally different and somewhat scary not feeling like you have a legion of people looking out for you and your child. I'm sure our PT will be great, but, I'm sure you understand the panic that comes with making sure your child is getting everything they need.
Remember back in the spring when I said J "finally caught up?" Well, yaah, she did, and then she entered 1st grade. Ha. It's proving to be much harder on my cute J this year. Her brain damage affected the processing ability, which we already knew, but it's rearing it's ugly head as the concepts are getting harder and harder (math..reading...). They have her on the "Rescue Intervention Team" at school. She meets with a reading tutor once a day, has after school tutoring with her teacher once a week, and I do 45-60 minutes of remedial work with her at home each night. It's exhausting but I'm hoping it will help! The RIT team will be watching her for another 4-6 weeks if there isn't any progression, even with the increase in help, they will do more language development tests to see if they can nail exactly what part of the processing is tripping her up (dyslexia, auditory processing disorder, dyscalculia, etc)...and then write up a specific IEP. I feel confident and grateful for the charter school we chose to put J in. Her Elementary school only handles K-3 and they have an Early Intervention Specialist for each grade specifically. I'm working closely with the teacher in hopes to reinforce what she's learning in class.
Sooo things here are going well, just a little overwhelming. But what part of that is new with us and our cute kids huh? I guess my main concern about J -and maybe y'all can give me some suggestions- she's getting to the age where you KNOW you're not doing the same thing as your peers in your class. It takes her twice as long to do an assignment, she's singled out for tutoring, etc. I don't want her confidence to be affected. I can't control the way other kids react or treat her, but I can help her channel her confidence. Any thoughts?
Friday, September 25, 2009
I'm Still Here
Just so ya know. I haven't gone and done anything crazy. Ok, yes I have. I signed up to be the soccer coach for Marshall's team. I also reluctantly agreed to take Marshall to Wasatch Mental Health again. They have NEVER been helpful. They have only said Marshall has sensory problems, that's all, and then left us with no idea as to what we should do to get through this mess! Thanks a lot guys....
I also let myself get addicted to a game on Facebook and spent every spare second I could, playing that. I think it was a way to push the stress away, but it was not good. I finally was able to realize that what I was doing was not right and I stopped. I deleted the game and blocked Facebook too. So, if you normally look for me on there, sorry but I'm MIA until I feel I have control over my obsessive behavior. Maybe I will never feel like I can go back to Facebook. Who knows. So, for now, read about the sleep doctor update, Marshall in soccer, a silly song parody I made up, and soon I will update about school. But for now...the link- http://buckleinbunch.blogspot.com/
Sorry I don't have more to say. I need to get a shopping list made before I get Marshall from school. I love 3 hrs of time to myself. Ahhhh...it's so nice!
Thursday, September 24, 2009
Radio Flyer
* I posted this same post over at my blog prematuritywithlove.blogspot.com*
Birthdays didn't mean much to me until I had a baby. Then the only thing important to me is making Tyler happy. With that in mind every time his birthday rolls around and me and Dallas get to give him gifts I try so hard to find something that invokes a smile and HOURS of fun and joy.
Last year my sweet little man got a basketball hoop and a chair. That chair is the grossest most loved piece of furniture we own! This year I went in search of the perfect "chair" to give him.
I found the perfect cake for the perfect party but couldn't think of the perfect gift. We went to the toy store and once again found a perfect "gift" but it wasn't "the chair."
I wanted to get Ty a bike but knew that his Cerebral palsy wouldn't allow him to hold on and still ride at the same time. I researched and researched and found a good alternative at the toy store.
A Radio Flyer
Dallas put it together tonight and some little boy LOVED it.
He really really liked being able to ride the bike.
Though we need to make some adaptations to the pedals and it will take a lot to get him to ride it on his own he was such a big kid and he wouldn't stop smiling.
He was pointing up the street and telling his dad he "wanted to go there PLEASE."
The mom had tears in her eyes and she watched him go. Flying up the street as fast as our feet would take him. As we would slow down and turn around he couldn't get his hands up fast enough to sign "more please."The simple joys of life. The simple joys a 3 wheeled radio flyer will bring.
I have an announcement to make. Not that it will be as big a surprise to you my cyber-friends as it was to my in-laws on Monday night, but I am now 26 weeks pregnant.
My husband and I have been playing a game. We thought it would be funny not to tell anyone unless they flat out asked us "Are you pregnant?" I guess we're cruel. We thought it would be fun to watch people squirm. Let's face it - you've either got to be really brave or really rude to ask a woman if she's pregnant. So, that's what we've been doing. Slowly a few people have caught on, but my in-laws have not known. Nearly 7 months into this thing, I'm showing, we've been dropping hints like crazy and they hadn't caught on. So we finally gave in and told them.
Of course I can confide to this group that beneath the surface there have been a lot of other reasons to keep things on the down low. The intense fear I have for one thing. I just haven't wanted to have to hash over things and answer questions over and over again about all the possible problems we might have. People are well-meaning. I just haven't wanted to deal with all that. Including all those people who think we're crazy to be having another child anyway.
It's been an emotional roller-coaster for me. Sometimes scared and worried. Sometimes just excited for our new little girl to come. We've had a few scares along the way, but everything has been fine and is fine now. But I'm also at the point where things have happened in my past pregnancies, (preterm labor resulting in losing a baby, other issues causing pre-term emergency c-section, miscarriage, etc.) which makes me a little nervous. I can't help but be a little paranoid and overly cautious.
Today was 'walk your kid to school day' and I drove anyway. I feel a little guilty about that. But it is painful for me to walk, and I'm too scared to 'push' anything.....I'm sure many of you, if not all of you can relate.
I wanted to ask you all about something that was brought up to us a few months ago. Someone mentioned the umbilical cord blood and told us that there have been cases where cord blood has 'cured' cerebral palsy. Have any of you heard anything, or do you know anything about using cord blood? I've done a lot of research about it on the internet. There actually are stories about CP 'going away' after treatment. But pretty much everything I've found on the subject has been produced by the blood banking companies -- none of it negative. It just seems too good to be true -or as easy as they make it sound. There's got to be more to it. We've got an appointment with a neurologist at Primary Children's in a couple weeks to find out about it. I'm trying to build a good detailed list of questions to ask. I have no idea yet if it's something I want to try or not. But I really want to learn more about it. From what I can tell, it has no risk, for the new baby. If it could help MK even just improve the slightest bit, I feel like maybe I should give it a try. On the other hand, it seems so new. Is it safe? What are the risks anyway? What is the procedure? ya know? Do any of you know anything, or do you have any good questions for me to add to my list?
Thanks for listening. I'll appreciate any input you can give.
My husband and I have been playing a game. We thought it would be funny not to tell anyone unless they flat out asked us "Are you pregnant?" I guess we're cruel. We thought it would be fun to watch people squirm. Let's face it - you've either got to be really brave or really rude to ask a woman if she's pregnant. So, that's what we've been doing. Slowly a few people have caught on, but my in-laws have not known. Nearly 7 months into this thing, I'm showing, we've been dropping hints like crazy and they hadn't caught on. So we finally gave in and told them.
Of course I can confide to this group that beneath the surface there have been a lot of other reasons to keep things on the down low. The intense fear I have for one thing. I just haven't wanted to have to hash over things and answer questions over and over again about all the possible problems we might have. People are well-meaning. I just haven't wanted to deal with all that. Including all those people who think we're crazy to be having another child anyway.
It's been an emotional roller-coaster for me. Sometimes scared and worried. Sometimes just excited for our new little girl to come. We've had a few scares along the way, but everything has been fine and is fine now. But I'm also at the point where things have happened in my past pregnancies, (preterm labor resulting in losing a baby, other issues causing pre-term emergency c-section, miscarriage, etc.) which makes me a little nervous. I can't help but be a little paranoid and overly cautious.
Today was 'walk your kid to school day' and I drove anyway. I feel a little guilty about that. But it is painful for me to walk, and I'm too scared to 'push' anything.....I'm sure many of you, if not all of you can relate.
I wanted to ask you all about something that was brought up to us a few months ago. Someone mentioned the umbilical cord blood and told us that there have been cases where cord blood has 'cured' cerebral palsy. Have any of you heard anything, or do you know anything about using cord blood? I've done a lot of research about it on the internet. There actually are stories about CP 'going away' after treatment. But pretty much everything I've found on the subject has been produced by the blood banking companies -- none of it negative. It just seems too good to be true -or as easy as they make it sound. There's got to be more to it. We've got an appointment with a neurologist at Primary Children's in a couple weeks to find out about it. I'm trying to build a good detailed list of questions to ask. I have no idea yet if it's something I want to try or not. But I really want to learn more about it. From what I can tell, it has no risk, for the new baby. If it could help MK even just improve the slightest bit, I feel like maybe I should give it a try. On the other hand, it seems so new. Is it safe? What are the risks anyway? What is the procedure? ya know? Do any of you know anything, or do you have any good questions for me to add to my list?
Thanks for listening. I'll appreciate any input you can give.
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