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Tuesday, October 30, 2007

Cervical Spine MRI

Okay; I have the CS MRI scheduled but couldn't get a Thursday until December so I rescheduled the follow up with the neurologist for the following week. I still need to get the neurosurgen scheduled but I have to wait for the neurologist's office to send over the paperwork to them before they will schedule. Considering they hadn't sent his records to the genetic physician until the day we had our initial consultation, I'm not too sure when we will be getting in to see them.

I hope to have everything done (as far as the Orlando trips) by mid December so we can get back to "normal". I'm still waiting on Early Intervention to get with the program and get Ryan scheduled with their therapists. I did receive a voice mail from them last week that they were working on it. It sure would be nice to get this taken care of as they come to the house. (unless the local hospital finally got their stuff together and are now on their list of providers) I almost hope that they haven't so they will come to the house. It is a lot of running around and by the end of the week I'm exhausted. I love Ms. Cheryl and wish she would stay on for Ryan's therapy but...... We shall see how things go and I will post any response I receive from them.

Thursday, October 25, 2007

Genetic Testing

Good news! Ryan's doctor that did the consultation for his genetic testing doesn't feel that he needs any further testing. She asked a lot of questions, went over all the medical documents from his MRI, EEG and the neurologist. She also did an examination and watched him play for a little while. She said that unless his feeding issues aren't taken care of with his therapy or anything else manifests itself that we don't need to contact them.

I was sooooo relieved to hear that. She also looked at his MRI and explained why the neurologist wants the cervical spine MRI done. It seems that they couldn't really see his neck area and that there was a question about it. She said it could just be the way he was laying during the test but they want to do this other MRI to make sure there isn't an issue. That was also a relief for me too.

Other than the stupidity with me leaving the lights on and killing the car battery, the day was good!

Tuesday, October 23, 2007

MRI Take Two!

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!!

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.

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.

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!