Feeling like I should write again!
Sage is almost 9 months old now! I can’t believe how fast time flies. Sage has been doing wonderfully. Since Sagie is growing up to be a big girl, Taylor and I have decided to start looking into Physical & Occupational Therapy for our little girl.
Some background info:
A lot of children with Hydranencephaly have increased muscle tone in their bodies. 41% of children they did a study on had increased muscle tone, 47% of the children were mixed, and only 6% of them were “floppy”.
I’m not sure how accurate these numbers are. I pulled them from the hydranencephaly foundation website and I don’t know how long it’s research has been conducted for something like that… but the percentages are high enough for us to want to get her started! I read a story on one momma’s blog about how they got their little girl started in physical therapy at an early, early age. When the post was written she was around 2 (I think…) & could walk with little help from her mommy & daddy! That is AMAZING to me! It’s those kinds of stories that really push me into doing these things for Sage.
Being a brand new mom for such a special child whose condition is incredibly rare, is extremely challenging when it comes to doing what is best for her. Doctors are sometimes SO hard to get through to when a medical concern arises— whether it be their unwillingness to really listen & understand and help or just their lack of knowledge on how to help. I know it’s not their fault; most are unfamiliar with my baby girl and how her condition is affecting her. They don’t know what is normal for her rather than what is normal for most & sometimes that is the hardest to explain.
I’m so grateful for all of those mothers and fathers out there who have a blog for their child living with Hydranencephaly. You do not know how much your experiences and stories have already helped my little girl! Even though I cannot thank each one of you personally, maybe one day you will stumble upon this blog and read this and can know that I am talking about you. Wonderful, amazing, strong, you. Thank you for helping this clueless mom out!