Our Matthew!
Matthew, our Millennium Baby, was born with a head of thick, black hair. Just beautiful! Immediately after birth we knew something was just not right. He had angulated thumbs and big broad toes and a stridor (making high pitched noises while breathing). Little did we know what was ahead of us?
Day 2 of his life our baby boy was placed in the Neonatal Intensive Care Unit. A few days later, we were gathered in a room with the doctors and told his diagnosis. He had a rare syndrome, Rubinstein Taybi Syndrome, or RTS. We were told that he will be of small stature, have mental retardation, speech delays, feeding issues and behavior issues as well; but as each child is an individual we should therefore take it one day at a time. WOW!!!! Not only was this our first child, but now all of this. They later also discovered he had a small floppy airway, a paralyzed vocal cord, low muscle tone and extreme mucous all due to this syndrome. After 3 1/2 weeks in the NICU, our baby boy came home with a feeding tube in his nose, oxygen, and a heart monitor. He was also discharged with speech, occupational, and physical therapy, as well as home nurse visits twice weekly. Matthew’s first few months of life were the scariest for us.
Some of our big boy’s challenges right now are developmental delays, speech, sensory, behavior, and sleeping issues. He has had nine surgeries including a tonsil- and adenoidectomy, hernia repairs and multiple dental surgeries through which he came with flying colors. Praise the Lord!
Sleep has been an issue from the beginning. Matthew has mild sleep apnea and I don’t believe he has ever slept a whole night through. Sometimes he wakes up 5 times before we get to bed. His bed is now next to ours and I’m longing for the day that he will sleep in his own room. Little sis gets pinched frequently, but handles it like a pro. Most behavior we believe comes from frustration. Speech is a challenge, but one he is trying to overcome with such determination! He is trying so hard and is starting to sound out words. I do believe speech is coming!!! Matthew started to sign at a very early age and literally knows hundreds of signs, which has helped him communicate in the past. Now Matthew uses his DynaVox communication device. It is so neat when you hear across the room, “I want ice cream.” He’s getting to be a pro at it using it. But what electronic device isn’t he able to manipulate? The board has blessed Matthew as well as us. Thank you to all who have made it possible!
Matthew started crawling at the age of 2 and learned to walk right before he turned 4. Actually, it was on Mother’s Day weekend. What a gift for me! These are the things you take for granted, but for us, each milestone is a celebration! Two activities he has recently mastered are swinging all by himself on a regular swing and riding his tricycle! It is so neat to watch him ride his bike with all of his cousins. Matthew is a very happy and loving boy!!! He enjoys going to school and likes everyone there. He’s entering 3rd grade this Fall and is very excited about it. Matthew is now reading with the Edmark reading program using his communication device. This is huge! He is also just learning to type and can now type is name without any assistance.
It hasn’t always been easy, emotionally or financially, but with the support from all of our families, friends, and you, the people we don’t even know, who have so kindly supported us; this journey has become much easier. Words can not express how we feel. We are focusing on the blessing that Matthew is and always will be.
He truly is a reflection of his name - he is MATTHEW, our “Gift from God “
Ma Ma (Kiki), Da Da (Ted) and Pey Pey (sis) - as Matthew so lovingly calls us!
At the hospital in the NICU, I took one look at my mom and knew she would take good care of me!