I have posted before about the feeling before an evaluation. The best way to explain it is the feeling of being on a roller coaster. You stand in line, waiting and anticipating what the ride will be like. You get in your seat. put on your safety belt and wait for it to begin. Slowly you climb up the hill, climbing and climbing and climbing until you reach the point of no return. Then it's all downhill from there. At the end you climb out of your seat and think, "I don't think I will want to do that again any time soon." Until you see the next roller coaster opportunity and you're in line again.
Today was the marathon of "roller coaster-ing". We had heard about CHOP's T-21 program from a pediatrician at our doctor's office. Then from there I decided to forget about it because I hadn't experienced CHOP's amazing care. Slowly I have switched over specialty care and finally took the plunge to getting her set up in the T-21 clinic. After waiting for a few months we got the call and the appointment.
I was beyond thankful that Kyle was able to go with me. We entered the building and found out that our referrals were for the wrong codes and that our Speech Therapy referral was never sent in. Go figure. A few calls later we were all set for the appointment.
We were met by the Physical Therapist and the Occupational Therapist through CHOP's T-21 clinic. Low and behold the OT was the same OT who evaluated Emilee for the water therapy program! The evaluation went great! Their recommendations were simply to work on building her core muscles, work on crawling position and ways to help with her rotation. All things we expected them to say! So, it was very exciting to hear that we were doing everything right and she is doing wonderfully in her development!
Next we were ushered back to the room for her Speech Therapy evaluation. We have not had any ST as of yet, but on Monday we will be adding it to her regimen. The therapist who did her evaluation specialized in feeding and drinking. We were told that everything we are doing is perfect! The only recommendation comes in the terms of actual speaking-- Baby Signing Time is in our future! (So if you know where to buy this for CHEAP, please let me know........... I am petrified to pay full price, but as everyone knows I will if it means it will help her!)
Finally we met Dr. Downes. Yes, very ironic. She. Is. Amazing. We began talking about a bunch of developmental things, her health in general, the specialists that she sees on a regular basis. EVERYTHING. I even was able to get information on how to get the hair pulling to stop. Let's just say I will be making a blanket, buying a doll with long hair and wearing a ball cap if that means it will help! I was able to ask a million questions that I needed answered and we left there feeling on top of the world.
Emilee is doing amazing. At this time she is 21 lbs and 7 oz and 31 inches long! She is reaching her milestones and her health is amazing (with the exception of her heart that we are aware of). We couldn't be prouder of how amazing she is. Dr. Downes said that she is a fighter and very strong. She's being given all the opportunities to grow and develop to the best of her ability.
Aside from more floor time with directed play and baby signing time, they also suggested a playgroup/music class. I honestly don't know how to fit this in the schedule considering we have therapy (soon to be) three times a week, I have to help with Connor's school twice a month AND in the spring we will be going back to water therapy on Thursdays (add in my school work and regular household chores.... hahahahahahahahaa). So when I get to send her to a music class will be the most interesting part............
Altogether we had a wonderful visit, we are off the roller coaster and hoping we don't have to get back on that coaster for a while--- well at least until Monday when we have our quarterly evaluation to add in Speech Therapy. We go back to see the whole developmental team when she turns two!
And that is all....... I tried to keep this to a minimum today but I could go on forever with everything that has been going on. It's been a crazy ride so far but I am no where near ready to get off this roller coaster of life----- it's a pretty awesome ride with some great company <3 <3
Today was the marathon of "roller coaster-ing". We had heard about CHOP's T-21 program from a pediatrician at our doctor's office. Then from there I decided to forget about it because I hadn't experienced CHOP's amazing care. Slowly I have switched over specialty care and finally took the plunge to getting her set up in the T-21 clinic. After waiting for a few months we got the call and the appointment.
I was beyond thankful that Kyle was able to go with me. We entered the building and found out that our referrals were for the wrong codes and that our Speech Therapy referral was never sent in. Go figure. A few calls later we were all set for the appointment.
We were met by the Physical Therapist and the Occupational Therapist through CHOP's T-21 clinic. Low and behold the OT was the same OT who evaluated Emilee for the water therapy program! The evaluation went great! Their recommendations were simply to work on building her core muscles, work on crawling position and ways to help with her rotation. All things we expected them to say! So, it was very exciting to hear that we were doing everything right and she is doing wonderfully in her development!
Next we were ushered back to the room for her Speech Therapy evaluation. We have not had any ST as of yet, but on Monday we will be adding it to her regimen. The therapist who did her evaluation specialized in feeding and drinking. We were told that everything we are doing is perfect! The only recommendation comes in the terms of actual speaking-- Baby Signing Time is in our future! (So if you know where to buy this for CHEAP, please let me know........... I am petrified to pay full price, but as everyone knows I will if it means it will help her!)
Finally we met Dr. Downes. Yes, very ironic. She. Is. Amazing. We began talking about a bunch of developmental things, her health in general, the specialists that she sees on a regular basis. EVERYTHING. I even was able to get information on how to get the hair pulling to stop. Let's just say I will be making a blanket, buying a doll with long hair and wearing a ball cap if that means it will help! I was able to ask a million questions that I needed answered and we left there feeling on top of the world.
Emilee is doing amazing. At this time she is 21 lbs and 7 oz and 31 inches long! She is reaching her milestones and her health is amazing (with the exception of her heart that we are aware of). We couldn't be prouder of how amazing she is. Dr. Downes said that she is a fighter and very strong. She's being given all the opportunities to grow and develop to the best of her ability.
Aside from more floor time with directed play and baby signing time, they also suggested a playgroup/music class. I honestly don't know how to fit this in the schedule considering we have therapy (soon to be) three times a week, I have to help with Connor's school twice a month AND in the spring we will be going back to water therapy on Thursdays (add in my school work and regular household chores.... hahahahahahahahaa). So when I get to send her to a music class will be the most interesting part............
Altogether we had a wonderful visit, we are off the roller coaster and hoping we don't have to get back on that coaster for a while--- well at least until Monday when we have our quarterly evaluation to add in Speech Therapy. We go back to see the whole developmental team when she turns two!
And that is all....... I tried to keep this to a minimum today but I could go on forever with everything that has been going on. It's been a crazy ride so far but I am no where near ready to get off this roller coaster of life----- it's a pretty awesome ride with some great company <3 <3
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| Standing during PT today! <3 |
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