Ok - I thought we were done other than the Genetic testing but that's what I get for thinking. We received the results from last Thursday's MRI for Ryan yesterday. It seems there is some sort of abnormality in the neck area. At least that is the area I believe the neurologist was talking about; she was using medical terminology and to be honest, once I heard abnormality I froze. The neurologist called me herself to give me the news. Seems we have to keep Ryan away from the chiropractor and contact sports. Ok, I did laugh when she said that but she did say that there are parents who take very young toddlers to the chiro. As far as contact sports are concerned..... sometimes Logan gets a little rough as does the other kids so I'm wondering if that type of play would fall under that heading. ;)
I'm still waiting on them to call me back regarding the other MRI (cervical spine MRI) and the follow up appointment with a neurosurgen. I have to double check this info as I said before my brain froze once I heard abnormality and cervical spine MRI. Not much else registered other than those two things. I will be calling them first thing tomorrow if I don't hear back from them to schedule this next test today. The good thing is that this other MRI can be done at the same hospital as the last one. I loved the people who did the test so I'm sure (at least I HOPE and PRAY) the same people will be doing this one. Please GOD give us someone with a good beside manner!!
Tuesday, October 23, 2007
Monday, October 22, 2007
Therapy and more trips
We had a good morning with all three therapies for Ryan. Ms. Corey was able to get him to eat a few bites of apples and plums with no bananas! She was also able to get him to eat two cheerios (hidden in the bananas of course) and a few licks on a lollipop. I have to be about the only mother who is THRILLED when told the baby licked a lollipop.
His gag reflex is still really close to the front of his tongue. She is working on it with him and so am I. The more we can get him to tolerate the better off he will be. They did get a piece of cellery in his mouth with a little bit of gagging. He didn't vomit at all this morning so it was a great session! He did great with Ms. Christime but he was tired and wanted to be done a little early so he kept telling her Bye Bye and giving kisses.
Ms. Cheryl was in with both the PT and the OT and he absolutely adores her. He wouldn't give her a kiss but he always lets her carry him to the car and put him in his car seat. He also lets her carry him in from the car too. I think Ms. Cheryl is always going to be the boys favorite therapist because they've known her a little longer and because she is just a super person. She loves them as much as they love her. We are very lucky!!
Well, we get to make another trip to Orlando on Thursday. Ryan is scheduled for his Genetic Testing so we have to be there around 12:45 to finish filling out paperwork. I'm not sure how long this will take and if it is the first of many visits or can they do it all in one appointment. I will be doing some more research this afternoon on this so hopefully I can let you all know soon. I had forgotten about this and made a parent/teacher conference with Logan's teacher for that afternoon. I'm not sure if I can make it back in time so will have to call them to check how long they expect the appointment to take and then make my decision on whether to reschedule p/t or not.
Friday, October 19, 2007
MRI Time
Well it wasn't as bad as I thought it was going to be. I had to get up at the crack of dawn (it was for me at least as I've become accustomed to sleeping in until 6:45 during the week) at 5:00 a.m. I was somewhat awake since 4:00 a.m. worrying about the day and the drive. Ryan was a little cranky but was able to fall asleep during the long 90 minute drive. We were lucky it wasn't longer; just as we got into Orlando the traffic started backing up but we were able to get where we were going with minimal sitting time.
I had pre-registered over the phone with the hospital but they always seem to mess things up. I went directly to the MRI/CT waiting area and was told since Ryan needed blood work that I needed to go up to that area and get the tubes. Ryan and I went up there and were told we needed to go to registration. I tried to explain to them that we'd already gone through all that but was told quite rudely if I do say, that I still needed to go to registration to bring them the paperwork. I went for another walk to registration and was told by that woman that I didn't need to be there but she was very nice and helpful and called everyone back. She told them, in no uncertain terms, that I didn't need to do anything but get the tubes. She gave me the person's name that she spoke to and said deal only with her and she will take care of you quickly.
On the way to registration I saw the most beautiful site; a coffee shop!! I didn't have coffee before leaving the house because I knew I would have to have too many potty breaks on the road. I stopped and grabbed a LARGE coffee and headed back to the lab. (They had sent me on a wild goose chase so they could wait on me now) I don't know how I made it all the way without my "brain food". I think my brain was able to deal with the drive but not anything once we got to the hospital. While looking for the lab I got off on the wrong floor; could see the numbers weren't what I needed but couldn't wrap my brain around that fact. I had to ask someone where it was located. I have to give her credit; she didn't laugh, didn't even crack a smile when I stupidly said "oh this isn't the third floor?" while looking at the suite numbers all of which began with the number two.
Once we had the tubes safely to the MRI area, we were able to sit and relax. Ryan didn't want me to have too much coffee. I believe he knew how nervous I was and acted up because of it. He didn't want to sit in the stroller or walk around; just wanted Mommy to hold him. Each time I would lean down for my coffee, he'd start throwing a fit. He was really good with all the attention once they got us back into the MRI room. He even went to the anesthesiologist with no fuss. This from the little guy who cries with ALL new people. Everyone from that point forward was fantastic. They knew that I had gone through this with Logan before but it didn't make it any easier going through it again with Ryan. Once we were in the waiting room for the recovery area; the anesthesiologist paid me a personal visit to let me know things went very smoothly and that Ryan was fine. He said, "You can relax now Mom, he'll be out soon" and patted my shoulder. Good bedside manner or the personal touch means a lot to me. It's very surprising in this day and age how many healthcare professionals have no clue about it. I guess they need to have a class on the obvious since not many seem to have the common sense to take a few extra seconds/minutes to put patients or parents at ease.
It took him longer to wake up than I thought it should based on how long it took Logan. It seemed liked it did to me at any rate. Finally they came to get me so I could go see him. He was in the arms of an older nurse and seemed quite content to stay there. When I first walked in he looked at me but didn't do or say anything. It took a few minutes but then he finally decided he'd come to me. The nurse was very tickled that he wanted her to hold him. We got our discharge instructions and were off to meet Daddy and Katie. Daddy had to get the two older kids off to school by 8:00 and then jump in the car and head our way to meet us with Katie. Once we caught up with each other it was through a drive through for an early lunch and then to gas up the vehicles. Daddy had to be in Orlando for work so I grabbed Ms. Katie and the three of us headed home while Daddy headed to work.
Between the drive and the stress of the waiting I was pretty exhausted when we got home and it was only 1:00 p.m. Biketoberfest traffic in our area made it harder than usual for the drive home. Now we wait to hear the results for the MRI which we should get today or Monday.
I had pre-registered over the phone with the hospital but they always seem to mess things up. I went directly to the MRI/CT waiting area and was told since Ryan needed blood work that I needed to go up to that area and get the tubes. Ryan and I went up there and were told we needed to go to registration. I tried to explain to them that we'd already gone through all that but was told quite rudely if I do say, that I still needed to go to registration to bring them the paperwork. I went for another walk to registration and was told by that woman that I didn't need to be there but she was very nice and helpful and called everyone back. She told them, in no uncertain terms, that I didn't need to do anything but get the tubes. She gave me the person's name that she spoke to and said deal only with her and she will take care of you quickly.
On the way to registration I saw the most beautiful site; a coffee shop!! I didn't have coffee before leaving the house because I knew I would have to have too many potty breaks on the road. I stopped and grabbed a LARGE coffee and headed back to the lab. (They had sent me on a wild goose chase so they could wait on me now) I don't know how I made it all the way without my "brain food". I think my brain was able to deal with the drive but not anything once we got to the hospital. While looking for the lab I got off on the wrong floor; could see the numbers weren't what I needed but couldn't wrap my brain around that fact. I had to ask someone where it was located. I have to give her credit; she didn't laugh, didn't even crack a smile when I stupidly said "oh this isn't the third floor?" while looking at the suite numbers all of which began with the number two.
Once we had the tubes safely to the MRI area, we were able to sit and relax. Ryan didn't want me to have too much coffee. I believe he knew how nervous I was and acted up because of it. He didn't want to sit in the stroller or walk around; just wanted Mommy to hold him. Each time I would lean down for my coffee, he'd start throwing a fit. He was really good with all the attention once they got us back into the MRI room. He even went to the anesthesiologist with no fuss. This from the little guy who cries with ALL new people. Everyone from that point forward was fantastic. They knew that I had gone through this with Logan before but it didn't make it any easier going through it again with Ryan. Once we were in the waiting room for the recovery area; the anesthesiologist paid me a personal visit to let me know things went very smoothly and that Ryan was fine. He said, "You can relax now Mom, he'll be out soon" and patted my shoulder. Good bedside manner or the personal touch means a lot to me. It's very surprising in this day and age how many healthcare professionals have no clue about it. I guess they need to have a class on the obvious since not many seem to have the common sense to take a few extra seconds/minutes to put patients or parents at ease.
It took him longer to wake up than I thought it should based on how long it took Logan. It seemed liked it did to me at any rate. Finally they came to get me so I could go see him. He was in the arms of an older nurse and seemed quite content to stay there. When I first walked in he looked at me but didn't do or say anything. It took a few minutes but then he finally decided he'd come to me. The nurse was very tickled that he wanted her to hold him. We got our discharge instructions and were off to meet Daddy and Katie. Daddy had to get the two older kids off to school by 8:00 and then jump in the car and head our way to meet us with Katie. Once we caught up with each other it was through a drive through for an early lunch and then to gas up the vehicles. Daddy had to be in Orlando for work so I grabbed Ms. Katie and the three of us headed home while Daddy headed to work.
Between the drive and the stress of the waiting I was pretty exhausted when we got home and it was only 1:00 p.m. Biketoberfest traffic in our area made it harder than usual for the drive home. Now we wait to hear the results for the MRI which we should get today or Monday.
Saturday, October 13, 2007
Food
I found a nice recipe for Peanut Butter cookies or so I thought. I think they are great but the kids don't like them too much. They are for anyone on the GF/CF Diet and anyone with Celiac disease.
1 cup creamy peanut butter (I use Smart Balance Omega Natural PB)
1 cup sugar (I use XyloSweet)
1 egg
1 tsp vanilla
Beat the egg and add other ingredients and beat until mixed. Shape level tablespoon worth into balls. Take a small fork with a little bit of sugar and press each way on ball. Bake at 350 degrees for 16 to 18 minutes or until set. Cool for 5 minutes. Makes 2 dozen.
I found this recipe on http://www.missroben.com/ and tweaked it to fit the boys needs. She also has a sugar cookie recipe along with the frosting that I will try out in a couple of weeks. I will let you know how it goes and post my converted recipe if they taste good.
1 cup creamy peanut butter (I use Smart Balance Omega Natural PB)
1 cup sugar (I use XyloSweet)
1 egg
1 tsp vanilla
Beat the egg and add other ingredients and beat until mixed. Shape level tablespoon worth into balls. Take a small fork with a little bit of sugar and press each way on ball. Bake at 350 degrees for 16 to 18 minutes or until set. Cool for 5 minutes. Makes 2 dozen.
I found this recipe on http://www.missroben.com/ and tweaked it to fit the boys needs. She also has a sugar cookie recipe along with the frosting that I will try out in a couple of weeks. I will let you know how it goes and post my converted recipe if they taste good.
Saturday, October 6, 2007
EEG
Well the EEG went a lot better than expected in some ways. He threw a major fit when it was time to put the "things" on his head. Once the girl had them all on and had wrapped his head up he settled down somewhat but was still very upset with me. I was able to make him a bottle and he fell asleep in my arms. What a difference from Logan; who never did fall asleep for them. Ryan's test was done so fast that we were in the office a total of 45 minutes, if that. Logan was in there a lot longer and I had to hold him down so I'm very thankful Ryan's went a lot smoother.
We received the results pretty quickly. Monday in the mail we got the good news; all normal. Now we get to look forward to the MRI in a couple of weeks. He's starting to get a little cold so I'm hoping it's completely gone by the time he has his appointment. I'd hate to have to reschedule because they are so booked up it may be around Christmas before they have another available time.
I didn't get to speak to the neurologist during the EEG and to be totally honest I was distracted with all that I had to do with Ryan. His eating hasn't changed but I spoke to his occupational therapist regarding his aversion to the peaches. She said that perhaps he has an allergy to them. Since he ate about half the jar she doesn't think he has an aversion to them but perhaps they don't agree with him and that is why he vomited them back up. I normally mix the bananas with his other fruit and then add either rice or oatmeal cereal. I did this with apples and apricots the other day and he ate the entire mixture. I think I need to attempt this with the peaches once to see if perhaps it was the fact that he just needed another taste added. Wish me luck with this one!
We received the results pretty quickly. Monday in the mail we got the good news; all normal. Now we get to look forward to the MRI in a couple of weeks. He's starting to get a little cold so I'm hoping it's completely gone by the time he has his appointment. I'd hate to have to reschedule because they are so booked up it may be around Christmas before they have another available time.
I didn't get to speak to the neurologist during the EEG and to be totally honest I was distracted with all that I had to do with Ryan. His eating hasn't changed but I spoke to his occupational therapist regarding his aversion to the peaches. She said that perhaps he has an allergy to them. Since he ate about half the jar she doesn't think he has an aversion to them but perhaps they don't agree with him and that is why he vomited them back up. I normally mix the bananas with his other fruit and then add either rice or oatmeal cereal. I did this with apples and apricots the other day and he ate the entire mixture. I think I need to attempt this with the peaches once to see if perhaps it was the fact that he just needed another taste added. Wish me luck with this one!
Wednesday, September 26, 2007
Eating Issues
I thought we had made a slight breakthrough today. I gave Ryan some bananas with apricots and he ate the entire jar with no gags or anything. I pushed my luck a little later with some bananas, oatmeal and peaches. He made a few faces and acted like he wanted to push the spoon away but would open his mouth for the bite. I'd say we were half way through that jar and he started burping and it all came back up. The bottle, the food from earlier and everything he had just injested.
I should have known not to continue giving it to him but I was so happy about the earlier breakthrough that I pushed it just a little too far. It's hard to tell exactly when he is "saying I've had enough because I don't like it or I've had enough because I want to play". I feel like he needs to eat more but this issue he has with smell, taste and feel just doesn't allow him to try new things.
Logan was never like this when he was this age. He wanted to eat bread, any bread at all and he would eat anything with gluten in it and dairy. He also never gagged and only vomited when he had a stomach virus/bug. These two are so totally different in this area that I have to start all over again. I'm having to research a total different area with him regarding feeding issues. I've started reading the Autism Sourcebook and I'm hoping that I will find something in there that is similar to this. If not it's back to the drawing board.
We go to the neurologist tomorrow to get the EEG done and I'm going to mention it to her again and see if she can recommend any reading/research on this issue. I can't remember how long it took us to get the results when Logan had his EEG. I just remember that it was very stressful on us as I had to hold him the entire time and sing any songs that he liked over and over to keep him quiet enough for the test. I'm hoping that it won't be so hard with Ryan but somehow I don't think I will be getting what I want there.
I should have known not to continue giving it to him but I was so happy about the earlier breakthrough that I pushed it just a little too far. It's hard to tell exactly when he is "saying I've had enough because I don't like it or I've had enough because I want to play". I feel like he needs to eat more but this issue he has with smell, taste and feel just doesn't allow him to try new things.
Logan was never like this when he was this age. He wanted to eat bread, any bread at all and he would eat anything with gluten in it and dairy. He also never gagged and only vomited when he had a stomach virus/bug. These two are so totally different in this area that I have to start all over again. I'm having to research a total different area with him regarding feeding issues. I've started reading the Autism Sourcebook and I'm hoping that I will find something in there that is similar to this. If not it's back to the drawing board.
We go to the neurologist tomorrow to get the EEG done and I'm going to mention it to her again and see if she can recommend any reading/research on this issue. I can't remember how long it took us to get the results when Logan had his EEG. I just remember that it was very stressful on us as I had to hold him the entire time and sing any songs that he liked over and over to keep him quiet enough for the test. I'm hoping that it won't be so hard with Ryan but somehow I don't think I will be getting what I want there.
Monday, September 24, 2007
Update
Sorry that it has been so long since I last posted; we have been very busy with the kids starting back at school and Ryan's therapy and tests schedules. Ryan went to Early Intervention this past Friday and was seen by the Psychologist. She won't be testing him for Autism until he turns 30 months but she did give us some unwanted results. She saw characteristics of an Autistic disorder; repetitive motor mannerisms and play, selective interest in attention, inconsistent response to his name, and perseverative vocalizations.
We will be continuing with his occupational, physical and speech therapy. Ryan has issues with food. He can't stand certain smells, tastes and textures which makes meal time pure hell. I contacted his pediatrician in June when I first saw that he had issues. At that time, 16 months, he wasn't crawling normally, not attempting to walk and wasn't saying much of anything. At that time, I was a little concerned with food but I thought he was just a little picky about what he liked to eat. Boy was I wrong. I was filling out some paperwork for his big brother and came across the Early Intervention checklist. I picked it up and was mentally going through where Ryan was compared to Logan and stopped. I realized that although he was much more advanced in some areas than Logan was at that age, there were other issues.
Since starting the therapy at our local hospital, I've noticed a great improvement in Ryan. He is walking by himself. He no longer does the snake crawl. He didn't crawl normally until after he first attempted to pull himself along our couch. He was walking on his knees at first; seems his balance was better that way. He has since become more confident and now walks pretty well. He mimics lots of words. His favorite is Elmo and Barney or "Barbie" as he says. He sees a baseball game and immediately says "AFLAC"; gotta love that stupid AFLAC duck!
I think it will be easier for me to continue updating with Ryan until we can get to a stage where Logan is currently. Since he's going through it now, it will bring all the things we had to do with Logan back to me so I can note where/what we did and where we can improve things with Ryan.
We will be continuing with his occupational, physical and speech therapy. Ryan has issues with food. He can't stand certain smells, tastes and textures which makes meal time pure hell. I contacted his pediatrician in June when I first saw that he had issues. At that time, 16 months, he wasn't crawling normally, not attempting to walk and wasn't saying much of anything. At that time, I was a little concerned with food but I thought he was just a little picky about what he liked to eat. Boy was I wrong. I was filling out some paperwork for his big brother and came across the Early Intervention checklist. I picked it up and was mentally going through where Ryan was compared to Logan and stopped. I realized that although he was much more advanced in some areas than Logan was at that age, there were other issues.
Since starting the therapy at our local hospital, I've noticed a great improvement in Ryan. He is walking by himself. He no longer does the snake crawl. He didn't crawl normally until after he first attempted to pull himself along our couch. He was walking on his knees at first; seems his balance was better that way. He has since become more confident and now walks pretty well. He mimics lots of words. His favorite is Elmo and Barney or "Barbie" as he says. He sees a baseball game and immediately says "AFLAC"; gotta love that stupid AFLAC duck!
I think it will be easier for me to continue updating with Ryan until we can get to a stage where Logan is currently. Since he's going through it now, it will bring all the things we had to do with Logan back to me so I can note where/what we did and where we can improve things with Ryan.
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