School, Trach Pulling, Parade and more...

It's been a while, so I thought an overall update was in order:

School - Going really well for the most part with only about 1-2 major meltdowns a day. Ben seems to be picking up where he left off last year with his sign language recognition. Another great team working with Ben this year. Later this week will be school pictures and a visit

from our local fire truck/department.

Trach Pulling - I'm not sure if Ben has gotten better at not trying to pull out his trach or we have gotten better stopping him before it happens. Maybe a combination of both. Ben still goes for the trach every time he gets angry, but doesn't seem he is getting as angry as often. And, when he goes for it I don't think he is really trying to pull out the trach. I think he is trying to take out the gauze underneath the trach and the artificial nose that sits on it. But, we don't take a chance and try to stop him before he can do anything.

Follow-up of Urology Surgery - Ben had his follow-up from his testicle procedure. The doctor was happy with his healing and said he doesn't need to see us for a year!! What great news! I look forward to the day when all 18 doctors only need to see Ben once a year, but until then this is still a nice treat! They will still follow him with yearly ultrasounds to make sure his urinary track reflux hasn't returned.

Hippo Therapy - Ben will start Hippo Therapy (horse back riding with an Occupational Therapist) in October. It's been a while, but I'm hoping he jumps right back in the saddle (literally) and enjoys it again.

Mum Parade- We took Ben to the Mum Parade this past Saturday. My mom and dad set up chairs early to ensure we got a good spot. When it was time to start, we walked Ben down in his wagon. Last year, Ben only had the patience to sit about 15 minutes. This year, he sat in a little chair the entire hour! I was shocked and so proud of him. And, every time someone handed him candy, he collected it all in a little pile on his left. He was so particular with where every piece went. It cracked me up.

He Shoots, He Scores!

We signed Ben up for Wheelchair Soccer this fall through TopSoccer. We are very fortunate that the location they play at is only a few miles from our house. Last Wednesday evening was his first practice and today was his first game. His team name is "The Rollers" and on game day they play each other. They even have cute little uniforms (we went out and bought some soccer-like shoes to complete the ensemble). Some kids ride in power chairs and other have buddies (or their parents) push them. Ben is the youngest and isn't too interested in the game yet. He does enjoy just being out there hanging around - as long as you keep him moving.

The TopSoccer organization is truly wonderful and everyone involved is so nice. I would recommend it to anyone with a special needs child. They have teams for all different abilities and ages. All the kids get to score and it is just so nice having an activity especially made to accommodate them and their needs.

Ben and his dad all geared up to play - boy was it a hot one today on the black-top.

Ben got the pleasure of kicking off to start the game -- and he did just that!

Ben guarding the goal... at least he was until he decided to kick off his shoes and distract dad allowing the other team to slip on by and score. (Ben ended up holding his shoes the rest of the game and occassionally would throw one when he got angry - I like to think he was trying to create a diversion.)

Sitting there holding the rope that marks the field was Ben's favorite part of the game.

Back in School

Ben's first day of school is today. He seemed really excited this year. I'm looking forward to picking him up so I can hear all about his morning (we have decided to drive him to school instead of riding the bus because he is still pulling out his trach when he gets angry -- yes, he did again over the weekend)! He has the same one-on-one aid, but a different teacher and different classroom/students.

UPDATE: Ben had a GREAT morning at school. He seemed like he jumped back in where he left off. Only a few upset moments and he wore his implant the ENTIRE time! He also used his new pony walker to walk to and from recess and the muscle room. I'm so proud of him!

Driving Ben and his nurse to school

Look, I'm actually wearing my cochlear implant!

And off we go... my trusty wagon and aid were waiting for me.

School, Nursing and Much More...

Ben's first official day of Preschool is next Wednesday, September 9. I'm excited for him and anxious to see how he adjusts to a schedule again. We had our home visit with his new teacher. She seems great and was really receptive to working with Ben's little "quirks". His WONDERFUL aid from last year will be with him again this year. Having that consistency is going to help him hit the ground running this year. He will be attending morning sessions again this year and will be going Monday through Thursday. We are also hoping he successfully rides the bus again this year (the buses this year will pick up Preschool, Kindergarten and 1st grade instead of just Preschool on one bus). I can't believe how fast this summer went.

We have had Ben's new Monday/Tuesday day Nurse work twice and she has done great with him. I feel confident that she will be all set to go to school with him next week. What a huge relief! Our other day nurse has been with us for years and she is excited to start another school year with Ben. She will go to school with him on Wednesday/Thursday.

We received the fall sign-up for Hippo Therapy in the mail and I'm really hoping we get a spot. Ben is fully recovered from his testicle surgery and able to ride again. I hope he hasn't forgotten his love of horses! Fall session is on Saturday mornings, so that will be a really nice family event for us to do together 3 Saturdays in October. I just LOVE Hippo Therapy!

I also wanted to give a quick update on some of Ben's labs/tests that I previously mentioned. We have decided not to do any further testing regarding his thyroid. After talking to his Endocrinologist, we've decided to wait for now and retest in another year. His Endocrine Doc wasn't as concerned with the numbers as Ben's Pediatrician and since thyroid falls under the speciality of endocrinology, I decided to go with his advice. Ben also had a bone age test and a bone density test (two different tests). Ben's bone age was normal, YAY! However, Ben's bone density was low. We are going to start Osteoporosis meds for his low bone density and he will be retested in a year (since the meds take a long time to really make a difference). Because he doesn't walk or weight bear, his bones are more brittle. We really need to work with him more in the Stander and/or Pony Walker. Now that he is all healed up from surgery, there's no excuse. We went back in to Audiology for another mapping of Ben's Cochlear Implant. We went even lower this time and checked the integrity of all of Ben's internal electrodes. Everything tested fine. I am able to get Ben to wear his implant for 15 minutes a day now as long as I sit next to him and hold my hand on his head over the implant (Ben insists on this, and the only reason I can figure out why is that it's comforting). He isn't getting much sensory input from the current mapping, but definitely a start!

And last but not least, Ben pulled his trach out on Sunday (the second time in 4 years this has happened). Ben can not breath at all with his trach out and it really gave him a scare (us too). He somehow flicked it out with his ties still on. He is doing fine... both Mike and I were home, thank goodness! We got it back in, started a little Oxygen and he was back to himself in no time. I was hoping this would scare him from any future trach pulling, but no such luck. Later that night, Ben was back to throwing the nose that sits on his trach. I just took this incident as a reminder of how fast something like this can happen and how I always need to be in the room with him. If I have to leave the room, I need to make sure to check every few minutes (literally, because that is all it takes). I know I have been getting more lax leaving Ben in a room by himself to throw in a load of laundry or check email. This reminded me of why I need to have an eye on him at all times. He sure keeps us on our toes!!