Update Spring 2002

Jennifer had all the usual tests including:

CT Scan of the abdomen
Chest Xray
Ultrasound
Echocardiogram
Blood tests
Hearing Tests
Eye Tests
Orthopedics

The only test that was different was a head CT scan which was performed as a part of her Neurological and Physiological testing that is still upcoming.

We were told a couple of weeks later that all was fine.

That was until we got a letter from Sick Kids Hospital stating that Jennifer was to see Neurosurgery on Wednesday April 17th. We were wondering what Neurosurgery would have to do with Neurological testing. We talked to our Oncology nurse, she stated "Oh, did we forget to call you?".

Apparently the Head CT scan showed a narrowing of the spinal column which may caused by a condition called Spinal Stenosis. This can cause pain while walking, numbness and other symptoms. We had brought Jennifer to see Orthopedics as she was complaining about leg pain. Nothing was found at that time.

Example of Spinal Stenosis. Right side shows the narrowing of the canal.:

We will provide an update soon after we see Neurosurgery.

Update - April 27, 2002

The visit with Neurosurgery has raised more questions than answers.

They began by checking out Jennifer's motor skills and asking questions about bladder control and breathing. They then sent her to X-ray for films of the upper spinal column. The results were not encouraging. Her second and third vertebrae are fused and there is a bone that is protruding into the space around the spinal cord. This was the reason for the original concern about Spinal Stenosis.

As well, Jennifer's range of front to back head motion is apparently beyond the normal maximum range. A CAT scan and CT scan are needed to confirm this diagnosis and what will need to be done. Until this happens, Jennifer cannot attend Gym at school or play soccer. The two things she loves to do! She is not very happy about this at all. The doctors are concerned that any sudden head trauma could be very dangerous.

We are seeing Genetics on Wednesday May 1st as a part of her normal routine. Maybe they will have some ideas if all this is related to Hemihypertrophy or some other syndrome.

Update - May 1, 2002

We saw Genetics today and they were surprised as we were about the latest problems Jennifer is encountering. They reaffirmed that Jennifer does indeed have Hemihypertrophy based on an additional consultation by another doctor. At this point the spinal problems seem unrelated to Hemi.

They do however feel that Jennifer may be experiencing the effects of some other syndrome. They are "going to work on this one" as the Genetic councilor put it. We aleady have an appointment for the head CT scan for Wednesday May 8th. At that time they would like to do a full body x-ray which takes about a hour to perform.

We are still waiting for the MRI to be scheduled, but we know when we are going to see Orthopedics and Neurosurgery. Not until July 1st !. Apparently they only have thier combined clinics once a month.

Will update the site after the CT scan and x-ray.

Update - May 14, 2002

The tests last week went fine. No needles which made very Jennifer happy. The results won't be known until July. Her next full set of tests are scheduled for Wednesday June 19th.

We now have a date for the MRI which is Saturday June 22nd. Feels like a long time.

Last weekend we went to Camp Trillium weekend camp. The kids had an absolute blast ! (so did the parents) A weekend full of games, fishing, canoeing, hiking, singing around a camp fire (fireplace since it was cold out), rock wall climbing and other generally fun things.

Travis wore a costume for most of the weekend. Jennifer made a kite with her "special friend".

Update - June 23, 2002

The appointment at Sick Kids for Jennifer's tests was uneventful. We are still waiting for the final results, but things look good so far.

The MRI didn't workout as planned.......

We took a chance that she would be alright with this test since she seems fine with the CT scan. The problem with the MRI is that it is very noisy and a little frightening because you are going into a long tunnel. Normally kids are put under general anethetic at her age due to these reasons.

We were hoping to avoid having here put under as the waiting is much longer (months) and she gets very sick afterwards. The other problem is that we meet with Neurosurgery & Orthopedics on July 2nd. Without the MRI we may not be able to have the appointment and since these clinics only occur once a month, we may have to wait quite a while.