Backlog journals - 12m to 14m

12 months old

I have brought an indoor baby pool for her with a neck float. The OI Parents forum said water exercise is good to build muscle strength. Evelyn enjoyed splashing & kicking in the water. We can see that she had gained some strength since then.

After a few session of pool exercise, she finally able to sit independently. Another big milestone had accomplished. Unfortunately, sitting may harm to her spine. we noticed her uneven shoulder. Her right shoulder was higher than the left, that means her spine have a curve to the right.

We were referred to a spine doctor right away. Prof Kwan and team measured the curvature degree and it was exactly shown at 22 degree. The T6 vertebrae was in triangle shaped, this deformity had made the spine curve started. They said nothing can be done at the point but to "watch and wait". It needs to be monitored in every 6 months.

We celebrated her 1st birthday with her grandparents and my sister's family.

 

 

13 months

Evelyn had gained some core strength on trunk and thighs, she can push her legs while sitting in baby walker. Woo hoo….

Living with OI is like a roller coaster. There are always shock news followed by a good news. Evelyn had admitted for pnuemonia again for a week. Thank god it was not as bad as those 2 admission before. It is only viral infection with no fever. I was all well-prepared and know what to expect from the pnuemonia protocol. The antibiotic of a week had been given, they did suction, nebuliser, physio as usual. They have given some oral antibiotic after the discharge. After a week, Evelyn had fully recovered. Looks like she can go back to her pool again :)

 

14 months old

It had been almost 2 months since Evelyn started water exercise. She loves water very much. She had getting more active after the water activities. Her arms and shoulders became stronger. This month, she started to sit with both legs in cross W position with both hands on floor. We're proud of her, she is our strong and brave girl. My tears off seeing her achievement.

The genecicist suspected that Evelyn might have Cole-Carpenter Syndome (CCS) on top of OI. CCS is a very rare syndrome that manifests with bone fragility, craniosynostosis, ocular proptosis, hydrocephalus, and distinctive facial features. It represents a form of congenital brittle bones resembling osteogenesis imperfecta. Simply said - on top of OI, CCS has additional symptons such as water in brain and abnormal shape of brain, head, facial etc.

the left xray taken at 9 months, the right was taken at 13 months old with curve at 22 degree

So a brain MRI was ordered to rule out if she had the above said symptons. Good news - everything were perfect in the report. That proved to the geneticist that he was totally wrong! 

It is proven from the OI research, that it is beneficial for a baby to start pamidronate as early as possible to strengthen bones and mucles, so the child can meet their milestones earlier, improve bone mineral density so bone fracture can be prevented. They also proved that the drug is good for her spine curve too, because the drug will flow into the spine to correct the vertebrae wedge-shaped perfectly so the spine may look good. We have always discussed with the geneticist to start the pamidronate drug treatment but our request have always being rejected with the 2 reason :- 1) Evelyn is too young to take up the drug, she might have sufferred from the side effects. 2) It is a standard rules in Malaysia that the drug can only be started at the age of 2 if no fracture occur or no bone pain happened. Evelyn had no new fracture since birth, at least a good news so far.

 

Quote : "Once you replace negative thoughts with positive ones, you will start having positive results" - Willie Nelson

Evelyn weighed at 14 months old : 5.98kg, 71cm