If you have followed our journey, even the littlest bit, you know that our son, John, is severely developmentally delayed. This was not something we knew would happen when he was born. This was not something we knew would happen when he was 6 months old. This was not even something we knew would happen when he was 1 year old. But some time after his 1st birthday, we began to realize this is what we had in store for us. John would never catch up with other kids his age. I don't think for a long time we even realized how severe it would be, but we did finally realize that he would not develop at the same rate other kids his age would.
One of the areas John is delayed is his oral motor skills. You wouldn't know it by looking at him now, but John was considered a "poor feeder" as a baby. And I guess as far as oral motor skills go, he still is a "poor feeder". He eats well these days, but not the way he is supposed to eat. John cannot chew food. He has to eat food that we puree for him. Now he can chow down on some pureed food, but he just cannot chew it. He has made strides in his oral motor skills as far as being able to appropriately move his tongue around in his mouth, but he cannot make the cognitive connection it takes that when food goes into his mouth, it needs to be chewed. His first instinct is to swallow. This habit is further reinforced by the fact that he eats pureed food. So it's kind of a catch 22 he's in.
Have you ever thought about all of the things you have to do with your mouth in order to eat and drink? Probably not. It's always just been as automatic as breathing for most of us. But if you break it all down, it may be one of the most difficult things to learn. And unless you have ever watched someone struggle to learn how to do it, you probably didn't know how complicated it is.
The other thing John has never been able to do is drink from anything other than a bottle. And I can remember a time when he couldn't even do that. Most babies are born and within a few hours, figure out how to suck for nutrition. Some may even take a little longer than that, but most children figure it out pretty quickly. It's a natural instinct that they are born with. John wasn't born with that instinct. He literally had to start from the beginning.
When he was in his little incubator in the NICU, the Occupational Therapist would come in and work with him. She would put a glove on her hand, and take her pinky finger and just put the tip of it in his mouth. Almost immediately, his heart rate and oxygen would drop and she'd have to remove her finger. She did this for several days before he finally could tolerate having her finger there. Then she focused on trying to provoke his suck reflex. This took some time, but again, she was just using her pinky finger. He eventually got to where he could suck on her finger and he even used a pacifier a little. But he couldn't keep it in his mouth. We would have to hold it for him. The next step was to get him to tolerate having any liquid in his mouth. She would use a syringe and put just a tiny drop of liquid in his mouth. Of course now he has to figure out that it has to be swallowed. When he was able to tolerate liquids, we started trying to use a nipple from a bottle. He was not good with this at all. His suck reflex just wasn't strong. So they introduced this special bottle to him. It's called a haberman and this is a bottle that is typically used for kids with cleft pallets. It does not require him to suck. Instead he can bite down on the nipple and the liquid would come out. He used this bottle for a while. But he still was only able to drink a tiny amount before he would tire out. I can still remember the day he drank a whole ounce. I was so excited that I called my whole family to tell them.
By the time John came home from the hospital at 3 months, he was still drinking from the haberman and he was tolerating about 3 ounces at a time. Around 6 months old, I noticed he was not drinking 3 ounces any more. He was tiring out much quicker and we would have to give him the rest through his feeding tube. Around the same time, he was admitted to the hospital because of his sleep apnea. While at the hospital, we went to give him a bottle. We decided to use a regular nipple, but instead of grabbing a regular one, we accidentally grabbed a NUK nipple. This is more of a flat shape instead of round. Suddenly he drank all of his milk. So the next time we used the same kind and he did it again. We went home and replaced all of his regular nipples with NUK ones. He started doing really well.
Fast forward 8 years and John is still drinking all of his fluids from a bottle with a NUK nipple. We have worked with OT's for years trying to get him to use something else. We have bought just about every kind of cup on the market, thinking this would be the one he could use. Sippy cups never worked because he would just bite on the spout. We tried using just an open cup, but it was really hard to control the flow and he couldn't handle large amounts of liquid in his mouth at a time. We always kind of felt like the straw was going to be his best option, but again, biting the straw was an issue.
It is not convenient for a kid to drink from a bottle. He is very particular about where he drinks and what position he's in and who gives him a bottle. When we go out somewhere, we have to time our outings to where we can be home before his next bottle. And if we go to a restaurant, he can eat plenty, but he gets very little liquid in his mouth until we can get him home and give him a bottle.
For a while, his therapist has been able to get him to suck on a straw occasionally, but never with much consistency. And when I would try at home, he would just bite on it. It was really frustrating. But a few weeks ago, I noticed by accident that he got a couple of good sucks on a straw when I was working with him at home. So I began working with it pretty hard. He started getting better and better. Ladies and Gentlemen, I am very proud to announce that after 8 1/2 years and many years of therapy, we now have a straw drinker. It has finally clicked for this boy and he is now able to eat all of his food and drink all of his milk in one sitting. I don't even have to give him any cues any more. I just put the straw in his mouth and he knows what to do with it. It is simply amazing to watch. If you have never watched someone struggle with this, then you can't truly appreciate what a huge milestone it is. But my husband used a pretty good analogy earlier that might help you understand.
This is what he said:
Over the weekend at JT's baseball game his team was down by 3 runs with bases loaded and 2 outs. The coach called in John to bat and he hit a GRAND SLAM!!! His team went on to win 4-3. John was voted MVP of the game.
Now obviously that didn't actually happen, but that is exactly how exciting it is for us. We are such proud parents. This little boy never ceases to amaze us. He just keep going and working and he never gives up. Not ever. He is absolutely the definition of persistence.
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