Little buddy turned two today. I have to be honest and say that these past two years have been quite the whirlwind with many ups and downs with our little guy. Please refer to these posts to be caught up.
There is so much good news that has happened in the past few months. Back in April, Trey was discharged from Mary Free Bed and at that time they said he was also done wearing his helmet. WOOP! In July it was evident that Trey still needs therapy. He was 22 months at the time, still not walking, and still not talking. It was clear to me - we still needed assistance. A quick phone call and 3 days later we were all set for an entry evaluation to be enrolled in Ken-o-shea's school for kids with a whole variety of disabilities. It was obvious to the evaluators that Trey would be accepted and they scheduled his first home visit for that next week. Once a week Trey goes to his school for a group therapy and another day he has in home therapy. It's fabulous and I know that this is the right place for Trey to be.
At that same time we changed Trey to a food plan that cuts out all gluten and casein from his diet. Apparently that has been linked to hinder development and we were game for anything that has potential to help our little buddy. I've become well versed in xanthan gum, potato flour, sorghum flour, tapioca flour and any other non wheat based flour. I'm now a pro at making GFCF carrot muffins, banana bread, meatloaf, and homemade chicken nuggets and can spot at least one thing at a restaurant that Trey can have. It's made me very aware of each and every ingredient that is in what we eat and sometimes it's a little disturbing. Is the new food plan working?!? I have no idea, but we're sticking with it because it can't hurt.
*I have to mention that the picture of Trey on the right is a classic face of his right now. He's into making faces to get us to laugh and this is one of them.... *
Trey has hit many milestones in the past few months. He's learned to hold his own sippy cup, he's starting to respond to "where's daddy?" and actually knowing what we're talking about, and using sign language for "more". About the first week into August has got to be one of my most proud moments for Trey. After 22 months of learning to sit up, crawl, pull himself up to furniture, Trey was finally walking. It was absolutely one of the best sights I've seen in a long time. He's of course - so proud of himself and thinks he's big stuff. A couple of weeks ago Trey was fitted for ankle orthotics to stabilize his ankles and to try to straighten them. They have already helped tremendously and for the first time in 2 years, Trey is able to walk in shoes - another fantastic sight to see.
Trey still is not verbally talking. He does babble some but it's not as often as we'd like to hear. When he does talk he scrunches his little face and works hard to get "dadada" out. It's a glorious sound. I would just love more than anything to hear him say "mama" and for him to understand that I'm his mommy... I wait patiently for that day.
I'm not going to lie, I'm terrified for what the future holds for Trey. All the "what if's" and unknowns that we will have to face are a bit daunting and at times completely overwhelming. It literally makes my heart just hurt knowing little buddy has all these obstacles to overcome. I have to say though, that when I see his chubby little face, a sense of peace overcomes me and I know that we will fight to the death to help him in any way we can.
Trey LOVES to be outside. I have a feeling he's going to be a landscaper when he grows up. His favorite is playing with the bark. He delicately picks a piece up and the throws it. One by one until there's bark everywhere. It's pointless to sweep.
We are still dealing with ENT's, Neurosurgeons, Neurologists, a multitude of therapists and many other general doctors. Each time we go it's hard - hard to bring Trey there as he can spot a doctor from a mile away, hard to grin and bear it as they poke and prod at my child, and sometimes hard to hear the news of what's next for our little guy. Trey has some pretty serious appointments coming up that I'm not looking forward to - just another step for our family as we take this journey together. Over all... we continue to love him, protect him, and look out for his best interests. We'll beat this - we will. Happy birthday sweet boy.
Words I cling to:
Proverbs 3:5-6 Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him and he will make your paths straight.
Psalm 46:1 God is our refuge and strength, an ever-present help in trouble.
Matthew 11:28-30 Come to me all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your soul. For my yoke is easy and my burden is light.
