A neuro update, Miss L. Age 2 1/2

Today we had another appointment with the neurologist Dr Simon Williams and I had no idea why. We had seen him only recently to discuss the results of Miss L's MRI. It seems this appt was supposed to be for that reason, but we got one earlier...oh well. He was happy to see us anyway as this time I didn't have the 2 big kids with me so we could actually talk about her future and her prognosis.

While there he showed me her original MRI images, age 11 months and compared to her new one age 2 years.
The first scan was the one that lead to the horrible discussion with her paed, that she may never walk, talk or eat. That is how bad it was. Underdeveloped brain, not enough white matter and too small for her age. This new scan showed some improvements. Her brain size overall had improved and her grey matter had grown. Sadly there was still some spots of not enough growth. Also her white matter was still thin and not fully developed. This is the part that allows the signals to pass across the brain and to the central nervous system.
From this new scan he said it was a positive sign to see some improvement even though it wasn't all fixed. I asked what this would mean long term and he said what all Doctors have been saying from the beginning.... Miss L is a unique case, as we don't have a diagnosis yet we can't be sure what her brain will be doing in the future. She is still an enigma not following any plan or known pathway. Based only on the new scan she could have either a mild or moderate developmental delay.

For me I straight away think about school and what this means for her. She will be 3 next year and both of my other kids started 3 year old kindy as soon as they were old enough...would Miss L be ready? Also as her birthday is in April she would be entering school in 2015 as one of the younger kids as the WA system dictates.... argh all these thoughts racing through my head and yet it's still all up in the air.

I also asked for an update on the DNA testing that was done last October. It seems the basic tests revealed nothing so they are testing further and looking at her enzymes which is a very complex and slow process. I tried Googling that but lost myself in the medical jargon. I will just trsut that they will keep looking until all avenues have been exhausted.

Walking out of the appointent I was surpised I didn't cry or get upset or picture the worst. I kept hearing him say that they really don't know what to expect and to see the improvemnts made so far, well that was enough for me. Even though she isn't "catching up" but developing "slowly" we are still seeing daily progress. Even over the last 2 days her speech has progressed to putting 2 words together like "Hi Daddy" and "nigh nighs Mum". My miracle girl might just surprise us all......?

Oh how far we have come

 

                                         

 

                                                       Oh how far we have come!!