32 Pounds is what Sophie weighed today at her checkup. I was so excited! Dr. Nieves gave me a huge high-five. Keeping weight on this child has been such a challenge, seeing her maintain her weight and steadily increase is such a relief and a blessing. She is 3% for weight and 10% for height on a typical child growth chart, that is awesome! She is on the charts and has remained there, huge win for us. Stronger Sophie = Stronger Body = Better chance of fighting off bacteria.

I am a little behind on doctors appointments, life has been so busy and I was just putting them all off, honestly; I just needed a break from it all. Sophie is doing really well, we are keeping her stable with all her meds and with isolation. As hard as it is keeping her home all the time we are adjusting, knowing it is literally keeping her alive is enough that we just moved on and just put that whole reality out of mind.

Dr. Nieves was there for my daughter’s sweet sixteen several weeks ago and spent the evening observing Sophie interact with everyone and is astounded at her developmental progress despite all the challenges Sophie has had to overcome. It’s so awesome to have the support of such a wonderful human being, and we are so lucky to have her as the head of Sophie’s medical team.

The only issue we came across is that now that Sophie is growing and getting pretty tall at almost 42″ her scoliosis is becoming visible, which means we will have to watch it closely. It’s hard to swallow that my five-year old already has noticeable scoliosis. Heart breaking, DAMN Cri du Chat Syndrome! But we will take it one day at a time and do whatever is necessary to help her and give her the best treatment possible.

At the end of the day the good news out weighed the bad and I will take it as it is. Nothing will break us or our positive attitude for life.