Families Beginning

     In the fall of 1998, my younger sister Amy announced that she was pregnant with their first child due in July. I had also discovered that I was pregnant but did not want anyone to know till I was three months along. I had had two miscarriages before I had Matthew. When I did tell my family you can imagine the excitement of having their first Grandchildren! Amy and I were both due in July. Our due dates were only ten days apart. Amy and I were so excited to be expecting at the same time!

    When Amy was twenty weeks along she was having a routine ultrasound. The ultrasound showed that the baby had a severe heart defect. She discovered she was having a boy and they sent her on for more testing. After more testing she found out her little boy had Down Syndrome. Knowing that there was a problem with his heart they were looking at open heart surgery when he arrived. Amy and Dave’s world completely changed to medical testing and Genetic testing! They handled everything well because of their strong faith in God. Prayers and family support got them through the challenges they faced. 

     In the meantime after I shared this with my Doctor she sent me on for Genetic testing and a Level 2 Ultrasound. This is when we discovered we were also having a boy. They did not find anything wrong in the Ultrasound. So we thought everything was fine. Little did we know…

     So Amy and I had our babies in the summer of 1999. Luke was born six weeks early in June and Matthew was born in July. Amy brought Luke to the hospital when I had Matthew. We have pictures of each of us holding both babies. 

(Amy with Matthew and Luke)

As time went by we suspected that Matthew had challenges. Amy is the one that spoke honestly to me about Matthew not speaking much for his age. He only had a couple of words at age two. She encouraged me to pursue a speech evaluation and stayed on me until I got him on the waiting list.

     Now I have to tell you that Luke and Matthew are best buddies! They have grown up together and their friendship is precious. Some pictures of them through the years are posted in the Photos and Images section of the Blog. My sister and I have a connection that we will always share. We support each through the ups and downs of the Disability world. We understand the heartbreak, joys and frustrations we are going through. It has been a blessing to be there for each other. I wouldn’t have it any other way!

 (Matthew and Luke at Easter)

(Matthew and Luke enjoying a snack)

                                                                                                                                

A Mother's Intuition

     First of all I want to let you know that Matthew was different from the minute he was born! After some struggles of having children, we were thrilled in 1999 to be having our first child Matthew. The pregnancy went well but the delivery was 14 hours long with some complications. When Matthew was finally born he had a very healthy set of lungs that would not stop screaming.  The labor and delivery were very hard on me so I was pretty out of it. He would not quit screaming until they wrapped him up really tight, burrito style, and put him in my arms. I will never forget the nurse standing next to me saying, “It’s a good thing he stopped screaming because we were about to call NICU (Newborn Intensive Care Unit).

     The next day Matthew would spend time in our room so I could work with him on nursing. Despite many efforts, Matthew could not nurse. We tried bottle feeding and he could not digest the milk at all. He started projectile vomiting which was huge! We started a new formula and the vomiting continued. The nurse had us burp him after every couple of ounces so he could keep it down. The vomiting continued when we brought him home. Matthew had to go to the Doctor frequently to make sure he was gaining weight. I was scared and wondering what was wrong with him. They did tell me at the hospital that he did not suck right. Could that be the problem?

    He had sensory issues right from the beginning. I believe the screaming when he was born was the bright lights and he had separation anxiety. You will see in future posts his struggles with separation anxiety. The vomiting that he had was from oral defensive sensitivities in his mouth. Some of the symptoms of oral defensiveness are:

1. Picky eater-avoiding certain textures, temperatures, or flavors of food.

2. Gagging easily or gagging with certain food textures or smells.

3. Chokes easily

4. Avoids/dislikes toothbrushing or facewashing

 The oral defensiveness continued with baby food. If it was chunky, he would gag and throw up the food.

     The journey was only just beginning. My intuition was starting to kick in that something was not right. The Pediatrician never said much in the beginning. He was gaining weight even though he was having feeding issues.