PAM Again

Sonya had her PAM treatment again earlier this month as well as her first DEXA scan. The DEXA scan (bone density scan) is similar to an xray in technique but provides us with more information. Since this requires the person to be perfectly still Sonya had to be partially sedated in order for them to get a clear image and to get her compliance. So a small gulp of Versed and Sonya was quite loopy! The results are compared to average 3 year old Caucasian females results. They are compared to average girls not OI girls because the goal is to reach an average bone density. To have a low density is typical in OI patients and this means the bones break easy. To have a high density is no good either as the bones become hyper dense (super brittle) and break very easy at this stage also. The medium scale is negative 2 to plus 2. Her results aren't great, still low density at negative 3.8. Her doctors don't suspect she will ever be in the average scale, but we will still continue Pamidronate (PAM) treatment to keep her chronic bone pain at bay as well as decrease her fracture rate and hope for an increase in density. She will now have DEXA scans yearly to track her bone density. If she were ever to reach average scores we would have to be sure to stay in that range and not go above in order to avoid hyper density which would be tragic in comparison to just having moderate to severe OI.

We also had her yearly spine xray and they found no scoliosis!!! She does have what they call compensatory scoliosis which stems from her Coxa Valga in her right femoral head causing a leg length discrepancy. Basically this was caused by a high up fracture in her thigh bone near her hip and the bone healed in this formation. The picture below shows Coxa Valga at the right, normal in the center and Coxa Vara in the left. You can see the angle of the femur hip joint is increased (in this picture it is slight, in Sonya it is more). This causes her leg to be longer (not to mention all the other fractures that have messed with leg length).

Even with her rods, braces and lift in her shoe it is still not 100% corrected and as she is standing her back is crooked because she is trying to compensate for that longer leg as she walks, hence "compensatory scoliosis". They don't want to correct the lift any more because it could pose as more risk at this time. The lift is currently at 1cm (or close to a half inch) correcting this at 50%. If we were to correct at full 100% this would bring the lift up to 2cm (or 3/4 inch) which would require the lift to be applied to the outside sole of her shoe verses simply placing it inside the shoe. Outside lifts pose a tripping hazard and we all know where that would lead... She is not in any discomfort over it so her ortho wants us to just stay as is and watch for the next 6 months for any pain complaints in her spine or hips. The only other thing to do would be surgery. At this point her ortho doesn't want to do hip surgery on her and I agree!

Ok, enough medical junk! On to the pics!

Giggling over bubbles!

I seriously love how a 99 cent activity keeps her busy for hours!

Sonya was lucky to have one of her OI girlfriends there in treatment too! Jenna is like a third big sister to Sonya and Jenna being the youngest in her family really enjoyed playing big sister to Sonya! She really loved the purple polka dot manicure and pedicure Jenna gave her!

The older girls are doing great too! Zoe is currently taking the PSSA's in third grade which she declares is "EASY!" She also loves not having homework for 2 weeks as she gets through these #2 pencil tests with her fellow classmates! Since we have some extra time without homework hogging it all, we tried out a really cool up do that I found at this blog. She loves it! It wasn't as hard as I thought it would be either! Akela didn't want to have hers done after seeing how long her sister had to sit still for it!

Ok, that's all for now. I'm on a major creative kick right now and currently have 5 on going projects which is the reason for my absence here... I know... sorry!!!