I wrote this when my brother turned 2 years old. It's a good summation of his story
.
Looking Back Through The Past Two YearsI remember when my mom was in labor.
I remember when my mom was taken to the OR to deliver the twins.
I remember when my sister, Ezzy and I stood in the hallway outside of the OR awaiting the twins arrival.
I remember when the NICU nurses whisked the twins by us in the hallway.
I remember when I burst into tears after seeing their precious and tiny faces.
I remember when my dad came out of the NICU saying, "It looks like the little boy may have Down syndrome."
I remember when the first and only thought I had was "that's not bad", and I purposed to be there for him.
I remember one of the first times I saw him he was under an oxygen tent and so tiny.
I remember when the twins were so tiny; their heads were smaller than the palms of my hand.
I remember when the doctors suspected he might have a hole in his heart.
I remember when he had the echocardiogram on his second day of life and how we waited and watched in silence for the word. After silence for a few minutes the man who did the echocardiogram said, "Everything is good." Tears were shed of utter joy and thankfulness to God.
I remember when Stacey A. heard the good news about his heart, she about dropped the pizza on mom!
I remember when he gave a little smile at only two days old.
I remember when my mom tried to nurse him, one of those first few times; he just laid there and wouldn’t do anything. We also had to hold the oxygen on his face while she tried to nurse him.
I remember when he had all those IVs in him including a feeding IV in his umbilical cord. The tape from the IVs hurt and cracked his fragile skin (we had the nurses fix that).
I remember when he had the IV taken out of his umbilical cord at 3 days old. I almost passed out!
I remember when he was moved into an incubator because he wasn’t maintaining his body temperature, and he required oxygen.
I remember when we would open up the doors of the incubator to hold him, or just stick our hands through the holes to touch and rub him.
I remember when we would take him out to hold him, or try to have him nurse; we had to be so careful about the IVs and all the cords that were attached to him. We had to watch his O2 saturations too.
I remember when his little arms and legs had the IVs in them and that stiff board taped around his arms and legs.
I remember when we would try to give him a bottle in that incubator and he would just lay there and hardly do anything.
I remember when he had a gavage tube in his nose so that he could be fed to gain some weight.
I remember when my baby sister, his twin, was discharged, after 6 days in the NICU. It made it very difficult because she couldn’t go with us into the NICU anymore.
I remember when we would have to leave him in the NICU. He would be awake, with his big, bright eyes starring at us, and we’d have to lay him down in that little bed and leave. That was so hard and sad!!
I remember when we did the "24-hour-boob-a-thon!" Mom would go in every 2 hours so she could nurse him. We had to show the staff that he could come home and survive!
I remember when mom demonstrated to the nurses that she could care for him at home . . . we just wanted him to come home with us!
I remember when the doctor agreed to let him come home after 13 days in the NICU. We were praisin' the Lord!!
I remember when he came home. I spent hours just sitting on the bed holding him, since the oxygen tanks were hard to haul around. But, we eventually started carrying him and moving his O2 tanks with us everywhere!
I remember the many trips we made back and forth to the hospital for "weight checks" every couple weeks to make sure he was "thriving."
I remember when we would question the doctors, going back and forth with them and showing them that he was fine with the slow weight gain. Little did we know that we would find out in just a few months, the answer was right there the whole time, hypothyroidism and nutritional deficiencies.
I remember after 6 weeks at home the oxygen was disconnected. He was finally off the oxygen!
I remember when we had the last appointment at Olive View, “what a relief,” we did not have to go back.
I remember when we found Dr. Kolchins. We were relieved to find a doctor who seemed to know a little about DS, we didn’t have to tell him everything.
I remember when he called and said his thyroid was "borderline-hypo." We were a little sad, but thankful that it was just that and not something worse. Little did we know that he had this problem since BIRTH!
I remember when we asked Dr. Kolchins for time to research. It was amazing what we found!
I remember when we started finding out what hypothyroidism was . . . that explained him to the tee!
I remember when we found out about TNI. We thought the information looked good and we had nothing to lose, but all to gain. God used TNI to improve his life SO much.
I remember after just days and within weeks of giving him TNI, he started to gain weight, he looked so much healthier. His face filled out and was not skinny anymore, he didn’t look sickly and scrawny anymore, his hair started to grow, he started to grow, his tone improved greatly, and he started exceeding in gross and fine motor skills tremendously.
I remember when we went back to Olive View and got his blood work records. We were shocked to find out that he had major thyroid problems from birth. We were told his thyroid was fine, when it was not. Knowing this could have changed those first 8 months tremendously! But, praise God we were able to find out about his thyroid and TNI when we did!
I remember when he learned to sit . . . only a month after starting TNI. His muscle tone was greatly improved!
I remember when he learned to drink from a sippy cup at 10 months old.
I remember when he could stand at 12 months. God had improved his life so much in just months!
I remember when we found out about and met Dr. Leichtman. We were very thankful to find a doc who told us so much more about DS than any other doctor. We learned from him, instead of having to teach the doctors.
I remember when he started to crawl. It was his own way of crawling, but he was crawling! He got around very speedily!
I remember when he got his first two teeth at 15 months. They were two top molars. We thought he’d look funny, but about the same time his middle top teeth came in. Shortly thereafter, his middle two bottom teeth and his bottom two molars came in. At 23 months, two more bottom teeth were coming in.
I remember when he learned to drink threw a straw at 13 months old. The honey bear straw cup from TalkTools worked so well! He learned in 2 DAYS! He was finally able to drink out of other things, besides a sippy cup. This was a great improvement for his oral motor therapy! He’s still on Straw #1, at 23 months old, but the Lord willing, not for long.
I remember when he did his first sign, "please."
I remember when he did another sign "eat" and another "owie." Now, he does just about any sign he's shown and he remembers them really well.
I remember how he signed "I love you" all the time. Even at times we are not expecting it. What a sweetheart!
Now, 2 years later, he is doing so well. God has been so kind and merciful to him and us. Looking back through the past two years is amazing. Things have changed so much from when the twins were born. They are such a blessing and joy to have around. Even though my brother may be slower than his sister is, and normally he is 2-3 months behind her in his skills, he's still a blessing. God has created him the way he is!
Wed Jan 28, 2009 3:01 pm
