This week we have been discussing where Sophie is at developmentally with her therapists. It’s time for her six month re-evaluation, I like to know how she has progressed. I’m the mom asking a million questions trying to understand how it all works, how it comes together and in what order she should be learning certain skills etc.
Earlier this week in speech and feeding she was evaulated at 8-9 months old , there was no change from her last evaluation in June. I was ok with that, feeding is and will be one of our biggest challenges because of all the sensory issues Sophie has had to overcome orally. But that is also my biggest goal for her, that she learns to chew and eat “food”. Right now we are at about 90% Pediasure and 10% soft or mashed food a day. Her feeding skills are more important for me than her learning to speak right now. I have accepted the fact that she may never speak, while some may think I am being insensitive I am just being a realist. Of course she has her own agenda and if and when she is ready it will happen. Not only does my daughter have a genetic disorder that affects speech development she also has significant hearing loss and lack of muscle control in her mouth. My rationale is there are many ways she can communicate with me but her learning to eat is critical for her health in providing nutrients as she grows.
In physical therapy she is doing great, she is ready to walk. Her danger awareness is starting to develop and she walks with her walker and will try to take a step from the sofa to the playpen while letting go as she transfers. I do believe she will just take off one of these days! You will hear no complaints from me there.
Today she had her OT eval, and there was small progress which of course was HUGE for me, any progress is a BIG deal in our home. Fine motor skills went from 5 to 6 months and overall from 7 to 9 months. Considering she never used her hands until a year old I cannot complain either. Using her hands and isolating fingers are difficult and will take a lot more time to develop. I do believe she is coming along nicely.
Over all we went from 8 to 9 months developmentally, I won’t complain. Some people may read this and think how could she be happy when her daughter is 31 months old and only 9 months developmentally? Here is why. She IS progressing, yes its slow progress but it IS progress and it’s consistent all across the board. And the fact that she is fighting through all the sickness to learn and her determination is just stronger with each day that passes is amazing to me. I have accepted my reality as difficult as it is but it is in fact “my reality” and I don’t want to pretend like one day she will catch up and be a typical child. I celebrate all her accomplishments and I appreciate her struggles. I have to say it’s become more difficult now with Tristan who will be 8 months soon and will surpass her in all aspects of development within the next two months. I do feel sadness sometimes but only because I wish for her sake to give her the ability to learn easier.
From the diagnosis of Cri du Chat and the horrifying news that we should not expect her to survive to the possibility of her being in a vegetative state “according to the doctors” I have to say we have come a very long way.
Today I feel happiness, I know God has a plan. I know this difficult road is a gift, I am certain my daughter is an angel. I do believe we were chosen to be her family because she has so much to teach us. I think God gives us the opportunity to have a little peace of heaven but it’s up to us to embrace it. The peace surrounding my daughter is so hard to explain, her innocence is pure and the moments of happiness she gives us really overpowers those tough days. How we learn to appreciate the true meaning of life and love is something not all of us get to experience. I never thought I would be here on this side, but it’s also very hard to imagine my life any other way. Yes, I did just say that.
Today, I am extremely grateful for all the loving support, the wonderful therapists and doctors that help guide us. Today was a great day for good news! I needed it!