August 5, 2009 PT & OT

Today was a great day! We were visited by Kolin, the Occupational Therapist and Shayna, the Physiotherapist.

Shayna and I went through a checklist she has of baby movements and we checked off the progress Ben had already made (rolling over, etc) and decided where were needed to focus in the near future. Ben’s primary goal will be to develop and maintain neck and head strength, as well as increase muscle strength in his abdominal’s. As Ben likes to throw himself backwards, we decided that we would start him from a laying position either on a couch or bed and use various hand positioning and cradling to encourage him to use specific muscles. Shayna stated that it was important to localize the muscles we want him to work on, instead of trying to get him to sit up and hold his head up and reach at the same time. She demonstrated several exercises we can do with Ben on a daily basis and Ben responded well to each of them when we tried them out. We’ll also be keeping him “safe” in case he flings backwards by using a soft surface as a starting point.
She’s going to drop by a Tumble Form chair, which I think is some kind of booster seat that is more supportive than regular seats and is also trying to get us in a for a referral for a GRIP seat (not exactly sure what that is, feel free to Google it!). I know it straps him in differently, enabling him to use his arms more and encouraging him to keep his head up!

Kolin watched as we fed Ben and was satisfied with his eating skills. He explained several ways we could introduce new textures and said not to shy away from trying new things (I explained that I selfishly stick things in his mouth all the time, just to see the reaction!!). Kolin also stated that bringing attention to Ben’s mouth by touching his lips, cheeks, tongue etc would be beneficial, as would bringing toys to his mouth to teach him that his mouth is a positive thing. We went over several hand over hand techniques, showing Ben how to play with his toys and reach for things. I brought up the concern of Reflux, regarding Ben’s constant spitting up and although I contribute it to his teething (his hasn’t spat up for a while, but is again lately. He’s also getting another tooth and some molars!), Kolin suggested that I look further into anyway. (check!)

Follow up August 25 – Shayna and Kolin will both be visiting Ben at his Nana’s house!

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July 29, 2009 OT

This morning we had our first OT appointment – specializing in fine motor coordination (reach) and eating mechanics (swallowing). Kolin asked a lot of questions regarding his development and had me demonstrate the levels Ben is at in terms of sitting up, reaching, holding toys, feeding, etc. He suggested several exercises that we can do with Ben to help him improve his back and neck control, along with some ideas for gaining interest in toys and playing. As per usual, Ben exceeded my expectations and decided to follow the toy Kolin had that lit up and played music (something he doesn’t normally do) with both his head and eyes; while it was still delayed, in the past Ben’s interest in that kind of thing has been lacking. Ben also held a set of toy keys in his hand, opening and closing his fingers around them for about five minutes (again something he hasn’t been eager to do in the past! YAY).
Next up, Kolin is coming out next Wednesday to take a look at how Ben eats lunch and to see if there is anyway to improve his eating skills. In preparation of that, we’re supposed to give Ben a spoon and let him play with it – with or without food! Fun times!
Definitely satisfied with the direction this morning went and excited about the possible outcomes of the exercises given to us to try!

July 15, 2009 Trip #2 to the Glenrose

Yesterday we headed back to the Glenrose to see a pediatrician who specializes in motor development – Dr. Sonnenberg. She tested several areas of his motor function in the hour we were there. Most noticeably, she engaged in “conversation” with Ben to see how he reacted to her both with his eyes and vocally. Not surprisingly one of her main concerns throughout the appointment was his lack of focus. His reflexes were on par and her test for Cerebral Palsy proved NEGATIVE! (whoop whoop). She weight him and it turned out he has actually lost weight over the past few days, I’m sure due to his ear infection! That was the only part of the consult that made me cry – I can’t believe he’s not only not gaining weight, but losing it. SO FRUSTRATING!
Again it was said that his size is a concern and that the feeding clinic should be our main focus right now – hopefully now, with two different doctors saying he needs help in that area, the waiting list may not be so long!
Also, we are being sent for blood work (appointment this afternoon!) and getting a thousand things tested – almost literally! 🙂 We even got a second sheet, added to the regular requisition form with special testing areas on it! However the testing is something that Dr. Sonnenberg thinks won’t tell us much. She also thinks it’s important for their neurologist to look at Ben’s file and possibly do some testing! Dr. Sonnenberg kept asking if anything went wrong early in my pregnancy (illness, falling, etc) but my pregnancy was pretty healthy and so she couldn’t solve anything from that either! Surprise, surprise!
She stated yesterday that Ben is a mystery and to doctors, that makes him interesting but to the parents it isn’t so fun! ABSOLUTELY TRUE!
We left without any further of a diagnosis other than Early Developmental Impairment – which means that whatever is wrong is something that should be able to be fixed – may take a long time and some hard work, but soooo worth it!

July 9, 2009 Our Trip to the Glenrose

As most of you know, we have been waiting for this day to come for a while now. We have had some concerns regarding Ben’s development over the past few months – he doesn’t focus on far away objects, cannot sit up independently or hold his head up, he doesn’t extend his arms or fingers and he hasn’t gained more than a pound since April. For all these reasons, plus some nutrition concerns, we were finally referred to the Preschool Assessment Clinic at the Glenrose. I thought I would write a general note and include everyone instead of explaining over and over what the result of our appointment was this morning.

Dr. Goulden narrowed the direction we need to head into three paths (and in order of best case scenario)

1. Ben just may need glasses and some additional calories. We personally have stocked up on fatty foods and are changing his diet a little until our referrals go through. We have been referred to Early Intervention, an ophthalmologist, and the feeding clinic (all with waiting lists, of course!) for these. Worst case – Ben may require a temporary feeding tube or gastric tube. I doubt it’s that serious as he definitely likes to eat; we just need to get him to eat high fat foods!
2. Delayed motor system – troubles with his reflux system, eyes, motor skills. Referrals made the motor development clinic and phys/med departments. (We are already on the waiting list for physio through home care).
3. General Development Concerns – going for an MRI – this is where Cerebral Palsy, Muscular Dystrophy and other neural concerns come into play. Dr. Goulden did state that he didn’t believe the MRI would be much help in determining what is wrong with Ben but it would omit a lot of possibilities – VERY GOOD THING!

Where do we go from here? We wait. Without a direct diagnosis we need to wait to visit each of these clinics in hopes of determining which direction needs to be followed. We’re crossing our fingers that tomorrow we can see the motor development people and get a better sense of things.

Thanks for thinking of us – keep thinking positively for our little Ben and hope it’s “best case scenario” for our beautiful little boy!

What’s this all about?

Welcome to our family blog!

I had been using a Facebook group to update friends and family about our little anomaly Ben but it is not nearly as convenient as using WordPress.  Plus I can add pictures where I want.  AND, this is much prettier.

The posts that follow be in chronological order of how we learned of Ben’s disability.  What it has meant since then and future follow ups.

Thanks for reading.

One of Five. Life with an anomaly.