THERAPY & MILESTONES


This is a history of the different therapies and dates of different milestones I have had in my life so far. I was very busy when I was really little, now I'm a little less busy since I've been in school:

**EYES

     The diagnosis for my eyes is that I have colobomas on both of my optic nerves, the right one being more serious. I am also far-sighted in both eyes and I have astigmatism {the pictures don't go straight back to my retina the way they should}. My best vision test so far has shown an acuity of 20/94 in both eyes.

      I have to patch my left eye {the one they say is the better eye} for two hours a day. The number of "patching hours" goes up and down with my vision tests. It was originally 4 hours, but we've also done 3 hrs and 1 hr at times. This is done to strengthen my right eye, which is weaker. I see an "orthoptist" every couple of months. She monitors my eyes with the patching to make sure that we aren't over or under-patching.

      Also, I wear glasses to help correct my astigmatism, this helps the light and pictures that come into my eye get back to the retina the way they are supposed to. It used to be a big battle between my mom & dad & I to keep all my "stuff" on when I first got my glasses in Jan of 99, but things have gotten better because on June 12/99, I decided that I loved my glasses now, and life just can't happen without them!! My orthoptist was really surprised to see this change, the glasses were NOT my favourite thing when I first got them! I ask for them every morning, along with my hearing aids first thing!

      I have a vision teacher who works for APSEA, which is the Atlantic Provinces Special Education Authority. They work with children in Atlantic Canada with vision and hearing impairments. She comes to my house every two months or so, plays with me and keeps an eye on my vision-related development. Both my APSEA teachers help me and my mom & dad alot with ideas, and information.

      My vision teacher had me involved with using a Little Room. It was loaned to me through APSEA. This room was developed by Lilli Nielsen in 1982 to help with the development of early spatial relations and how the visually impaired or otherwise impaired child can achieve their own sense of "space". I used to like this Little Room, lots of fun and there's lots of stuff to play with in there. Now that I'm getting bigger, I hit up against the sides and get mad, so my teacher has just taken my little room for another child to use. It is something worth checking out if you have a child with multiple sensory impairments!


**HEART

      I was on Propranolol medication because after my heart surgery I had post-op SVT's {supraventricular tachycardia - my heart was beating REALLY fast}. I haven't had any of these SVT's since my first little bout with them. It's just precautionary that I'm on the medication. I saw the cardiology guys in early June '99 for a checkup, ECG, ECHO, the whole nine yards. Everything went really well at my check-up and they don't want to see me again for a whole year!!! Yay!!! They also decided to wean me off of my Propranolol. Now I'm not on any heart meds!!! My last ECHO was done during another surgical procedure I was having done and everything looked fine.

**EARS/HEARING

     The most recent ABR {auditory brainstem response test} showed that my left ear, the one we'd thought was close to "normal" for hearing is not normal, it has a 55 db loss, which means a hearing aid for my left ear along with my right aid that I already have. {My right ear has a 90 db loss}. We work pretty closely with our local audiologist who is really great with us, we see her often and have now begun to do some testing in the booth. I have a BAHA Softband hearing aid now made by Entific. It doesn't go in my ears like the old ones with molds, it's like a hair band with a bone conduction aid on the back that sits on my mastoid bone and vibrates. I love it and REFUSE to wear my old digital hearing aids!

     I have a hearing teacher that comes to my home every two weeks. She also works for APSEA. She gives my mom & dad information, plays with me, and keeps an eye on my development on the hearing side of things. My hearing and vision teachers are really great, I think I like those appointments best, cause they are here at home!

Mom & Dad have been using "total communication" so far with me (signing and speaking at the same time) but my mom has attended a couple of auditory verbal therapy workshops and feels it's time to try and wean me off the signing and concentrate more on my listening skills and verbal skills. (June '00)

I have myringotomy tubes in my ears as well, to help with drainage and I am monitored by our local ENT, and our ENT at the Children's Hospital who does my ENT surgeries.

**OCCUPATIONAL AND PHYSIO THERAPY

     I go to the hospital every 2 months or so to have physio therapy. My physiotherapist is working hard at giving me things to do to strengthen me up some. I started to sit up really well on my own at about 14 months. My mom is so proud of me, this was everyone's goal for me to happen before June '99 and I surprised them and did it in April.

      Over the summer, I started standing holding onto things for short periods - 15 minutes is my record. I can pull myself up onto my hands and knees as well, this started in August '99. I don't go anywhere, but it's sure a big deal around here when I do it. My best way of moving is rolling, but I also like to backscoot. It's lots of fun to backscoot, but my PT isn't crazy about it. She will be excited to see me later this month (Jan/00) because I started to CRAWL!!! It took me a long time but I'm doing it! I have also started taking some steps holding mom or dad's fingers. Everyone is so excited and proud of me.
I got my walker in May of 2000 and I love going all over the place in it!! It's called a "Pony walker" and it's soooo cool!
     On October 13th/00, I took my first independent steps, about 4 steps back and forth between my mom & my nana. I did it for almost 20 mins! I started to walk a lot more in January 2001, just before my 3rd birthday. I'm still pretty cautious but I'm doing it a lot more!
      I am doing really well with walking now {Sept 01}, keeping up with my school mates quite well, although stairs are still a bit challenging for me.
**January 2002 - I am now starting to run, and I jumped (with both feet actually coming off the floor) for the first time this month! Look out world...:)

      The occupational therapist is working with my different grasps and trying to get me to pick up things with different sizes and textures. Also she's getting me to try and put little things into a container, and take them out again, which I have mastered pretty well over the summer. She gets me to draw as well, and try to mimic the shapes she draws, straight horizontal & vertical lines, round circles, etc. We have just begun doing a little bit of unofficial testing on an old scale called the "Koontz" scale (11/99). So far, we have only tested my fine motor skills, which came in at 24months! Pretty good for a girl who was only 22months! In January, I went to see her again, and I'm doing so well, she doesn't want to see me for TWO MONTHS!! WOW!

      {Sept '01} At our latest appointment, we did some tracing, cutting with scissors, picking up small blocks using kitchen tongs, etc. I did very well with all of these activities and I will be doing more of this at home and school to practice using both my hands together more.

**KIDNEYS

     My kidneys both have mild bladder to kidney reflux. This was shown with a VCUG test which I had done in February of 1999. We are treating this by having a urine analysis every 2-3 months to check for urinary tract infections and also by having a renal ultrasound every 5-6 months to check for kidney growth. I just had my first 5-6 month ultrasound and everything looks great, no big dark spots {which would indicate urine in the kidneys} and they are both growing normally! Yay!
At my second Ultrasound on Feb 4th, 2000, the result was the same, no dark spots and the kidneys look like a good healthy size.

I had another kidney ultrasound on Sept 14th/01 and everything looked fine.

I was daytime toilet trained at the age of 5 years, just before I went to school - Yippee!!!

**FEEDING

     I am totally fed right now through my gastrostomy button. We had a test in April to see where my food goes when I swallow, and I protected my airway quite well, but my food comes out my nose when I swallow (nasopharyngeal reflux), which can be a problem if I breathe it back in. They decided that I shouldn't eat orally right now, until my swallow is a bit safer.

      At a re-test in September 99, I failed the swallow study yet again, although I was very eager to eat the ice cream they fed me. Now that I have the desire to eat, hopefully I'll pass the test next time!!! I get 3 bolus feedings a day of Pediasure Pediatric formula, along with food mom & dad prepare for me in a special blender & cream of wheat for breakfast. I used to be on a feeding pump while I slept to get extra food into me, but I was getting too fat and my doctor said I could stop the feeding pump overnight. I don't know why mom was so excited about this. I thought it was great fun to disconnect my tubing at night and play in the mess!

     Update - Barium swallow study done on June 14th, 2000 and I passed to everyone's surprise! Now mom and dad are going to slowly start to get me to gain interest in oral feeding again and take some tastes. It will be a long road to oral eating but at least we passed the first hurdle! I like ice cream, puddings, yogurts and the taste lately has been Cool Whip! (Jan '01)

      {Sept '01}I am still trying different things, I go through phases where I will like trying lots of things and other times where I don't. Lately I like to suck/chew on a carrot at the table with everyone and then throw it into everyone else's food!

I'm still doing tube feedings bolus as of August, 2006, but I still try lots of different tastes and take a yogurt tube for recess everyday, which I eat most of. I'll eat orally when I'm ready and not a minute before, plus I can do my OWN tube feeds now, which is pretty cool and fun.

**SPEECH

     I got to see a speech therapist in May '99 for the first time. My mom took a course called the "Hanen Early Language Program", which will help her encourage my communication. Now that the course is done, I see the speech therapist about once a month.

      We are working on lots of things at speech, trying to get me to speak using toys and prompts. I get to blow bubbles at speech which is lots of fun. Everyone was surprised when I grabbed the bubble wand and blew those bubbles right out on the first try! As far as my language goes right now, we are doing "total communication" - which is a combination of both sign language and oral language. It's really great because I'm learning both and right now I have about 50 signs that I do and about 30 spoken words. (As of Feb, 2000) Starting in September, I have been going to a preschool speech group with other kids and I just love it. I go once a week for an hour until December. Then I will go back to my regular speech apointments.
I am back to weekly speech appointments with Beth and things are going well, we play listen games, and I do puzzles and play with toys & books & play food. It's a lot of fun!

I am getting ready to go back to speech group starting this October ('01) with about 4 other children, can't wait!
**January 2002 - Back to weekly appointments one on one with my SLP, Beth; I loved the group time but I also love my one on one with Beth!

**DENTISTRY

      I have been to see the dentist at the Children's Hospital twice now. At my latest appointment (Sept '01) , the dentist said she was very happy with my teeth, they are all in, lots of space in between and no cavities. She is happy with the way mom & dad & ME are brushing my teeth. Mom & Dad were concerned because I am grinding my teeth a lot lately, but she explained to us that the movement of the teeth in the jaws causes a lot of kids to do this and not to worry at this point.

**ENDOCRINOLOGY

       I am currently being tested for low blood sugars. I am followed by an endocrinologist as growth hormone defiency (GHD) can be common with CHARGE. I had some preliminary blood work done and one of my tests showed that my blood sugar was a bit low. This can be a sign of GHD, so we did a more in-depth test recently (01/00). It might have just been that it was a while since I'd had breakfast, but we want to check it out. If this one comes back low as well, I will probably go for the actual GHD blood test. The reason they try to rule it out in other ways first is that the GHD test is 6hrs of blood tests, every 1/2 hour. They put a hep-lock in first, but it's still not too pleasant!
***UPDATE - My blood sugar test came back A-OKAY!! So, for now no GHD test.

**OTHER

     I am also visited bi-weekly by an Early Interventionist, who plays with me and brings lots of toys. She tries to get me to do age-appropriate developmental stuff through play. It's one of my favourite appointments, she brings LOTS of toys! When I see her and her BIG bag of toys, I go crazy!!!

  • I will be starting preschool after Christmas 2 mornings a week to get me used to being around and playing with other kids. I can't wait!!!

  • Dec '00- I am having a lot of fun going to preschool. We do crafts, have a circle time where we sing & learn neat stuff, we have free play time, we paint, we go outside to play and we have snacks. It's a great time, and I have a really great aide who gives me a hand when I need it, her name is Carol!
    Sept '01 - I just started back to preschool, 2 mornings a week for 3 hours now (last year it was 2). Things are going well and I am doing much better keeping up with the other kids.
    Jan '02 - Going to preschool now 3 mornings a week for 3 hours each time, It is so fun!
    May '02 - Going 5 mornings a week for 3 hours now, and working on going for 5 full days, from about 9-3, to get ready for school! Can you believe I'm doing stuff to get ready for school already???!?
  • Sept '02 - Going full time to preschool now

    2004 - Update
    I go to school full time now, my APSEA teachers visit me and work with me there. I am pretty much just on a consult basis for OT and PT. I can ride a two-wheeler with training wheels and pretty much do everything the other kids do. I have continued steadily with speech therapy and regular audiology visits.

    2005-2006
    Pretty much the same stuff going as last year; speech, APSEA at school, audiology, and usually yearly check ups with dentistry, ophthamology & cardiology.

    2006-2007
    I don't go to speech anymore because a lot of what my APSEA itinerant teacher for students who are deaf/hard of hearing does with me is the same. I still have check ups with audiology, dentistry, ophthamology, cardiology and now....FEEDING TEAM! I started eating orally full time in August 2007 after 9 1/2 years with a tube. I got my tube out on November 19th, 2007 and I have my first appointment with the feeding team in December 2007. I am very excited to show them how well I can eat.

    2008-2009

    Things are going well with eating, trying lots of new foods but still falling back somewhat on purees to get enough meat and veggies but I eat 'em all.  Getting ready for MIDDLE SCHOOL in the fall ('09).  Can you believe it? 

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