Tuesday, September 23, 2008

Mom Goes Back To Work

Joy returned to work yesterday following being off a couple of months for maternity leave. It was hard for her to leave him but she made it through. Even though I had been talking with some people about going back to work myself, we had dedcided that I would stay home with him while I am finishing my school work. Knowing that John is at home with me made it a little easier for her to return to work.

The first day went pretty well for us. John had slept his 7 hrs the night before which we are enjoying, but those 7 hrs are not always in line with our 7 hours. He is slowing training us to get on his schedule though. That morning he woke up and fed once at 5:00a.m. and another time at 7:30 before she left and I left to take the kids to school. After that, the test began - how would he do with taking the bottle?

I am in between classes, so our morning was nice and relaxing. He was awake and we spent a lot of time on the floor just playing and providing a lot of stimulation for him and different sounds, etc. This is a lot of fun as he is becoming more and more interactive with us - making sounds, facial expressions, grasping our hands and following us with his eyes. We still use the little floor gym that Joy's partner gave us for a shower gift. That toy has been very useful and practical for him.

Once while he was on his belly, he began to cry and complain. So when I picked him up, he immediately acted like he wanted to eat and this was only about 9:30. Well, I knew that it was too soon for him to eat and felt like he just wanted to be comforted because the mean ole Daddy had made him work. He settled down to sleep without the bottle and was fine.

When it finally did come to feeding time, he didn't take right to the bottle but got used to it after about 5-10 minutes of trying. We use the low flow Platex nurser for him which after trying several has worked the best for him. I do have to hold his head still as he gets very excited and is just all over the place with that nipple which doesn't work and he then gets frustrated.

We have noticed that even when John sleeps, he doesn't turn into a wet noodle as before. We can tell that his muscle tone is not like a typical child but it is not as low as it once was either and we feel that this is partly due to the fact that John gets almost coninuous stimulation from either his siblings, Joy or myself. We still try to provide him with good skin to skin contact as he still seems to enjoy that the most. For instance, if he is sleeping on my chest and I have a shirt on, he will find the opening of my shirt and rest his hand upon my bare chest and grab my chest hair as if he is clinging to it for safety.

His head control continues to improve. He can hold it in midline with much wobble. We work with him on this either on the floor or on my chest. Being on my chest gives him someone to look at when he lifts his head. If he is on the floor, I will get in front of him while either stroking his back or stabilizing his hips in order for him to get full extension of his cervical/thoracic spine.

For right now, this is working for us as I hope that you too will be able to find a way to spend more hands-on time with your child as they really benefit from touch and interaction.

Friday, September 19, 2008

Full Steam Ahead with New Theme Song

It is good to get back to posting again after a long week of concentrating on getting out of statistics. I would rather be blogging about my son than to be doing statistics.

John continues to meet our expectations and also sometimes surprise us with his abilities. We are seeing more and more that genetics is more of a factor in defining John than Down syndrome. While we continue to see trademarks of Ds in him, they are overshadowed by the same traits and characteristics of his family. From his facial features to his discontent of being still, it doesn't take long for one to tell that he is a Hill boy. As a matter of fact, people comment on the way he looks like his siblings much more than they comment on his having Ds.

Joys family tends to be short and my family is average in height and tend to be on the smaller end of the weight scale, so all of our kids have been average of below on the growth chart. John comes in at 50th percentile on the Down syndrome growth chart for height and weight and between the 10th and 25th percentile for height and weight on the "typical" growth chart. These measurements are pretty much in line with our other kids.

We continue to work with him on head control, although we are not as intense as we have been. One reason that we are not pushing as hard is the fact that he is a very active baby on his own. He is better able to hold his head up when he is in a sitting position and on his belly which uses the muscles in the back (extensors). It is much more difficult for him to move his head from back to front which uses the muscles in the front of his neck (flexors). I don't believe that it is because he can't perform this but he probably doesn't have as much of a chance to do this. So we have been trying to give him more opportunities to do this. Also, we have chosen a workout song for him. If you remember the song entitled Hold Your Head Up from the 70's. This seems to be appropriate for him. You can listen here.

He really responds well to music. So we sing and dance to CD's which he loves. It is a wonderful feeling for me as a Dad to dance with him in my arms while we listen to a CD and he focuses on me so intently as I sing to him.

As for the gagging episodes that was discusses in the last post, they still happen but they come less frequently as long as we get all the burps up after he eats. They also seem to come when he strains which causes him to reflux. For us, since we have some control over how often these episodes occur, it is not worth using medication at this point.

Thursday, September 11, 2008

God's Grace is Sufficient

Good morning. Here we are at 12:40 in the morning. This seems to be our regular wind-down time. He has spent the last hour in the jungle gym playing and stretching himself. He really loves that thing - thanks Shannon. That has proven to be very functional for what he needs. He is beginning to bat at the stuffed animals that hang from above. There is a music mode on there that turns on when the baby kicks or hits at a toy or one of the supports. I'm not sure if he is learning that he can make it come on but he kicks at it often when the music goes off to turn the music back on.

Yesterday was our appt. with the therapist friend of ours. This went very well and it was very helpful to learn what things to watch for. They were able to look at the situation objectively which was a little blurry for Joy and I no matter how much we try to stay objective. I think that Joy and I were able to come away from there more in tuned with each other and what we want for John. I think it was especially good for Joy in that it challenged her to think about this differently than what she had been and that different way of thinking is to be more proactive. So thanks to my friend - we really appreciate and value your input. You are a very gifted therapist with a heart for the kids.

A new issue that has caused increasing concern for us is gagging. This began about 3 weeks ago with just some non frequent gags. But now that they have become more frequent, it has caused us to be more cautious. They only happen when we don't get all of his burps out and not when he eats. So we believe that it is more likely to be reflux and his ability to handle the reflux because of low tone. With that said, we are going to first try some reflux medication to see if this helps him. If this doesn't help, then we will look at a swallow study to get a better handle of what is going on.

Another reason for not getting all excited about this (but then again, we aren't very excitable people when it comes to health care; we are quicker to act than to get excited). As I was saying, the other reason is that he continues to gain weight very well. Joy took him to clinic today to weigh him and he weighed 9lbs. 5oz. with a onezy on and he was 21 1/2 inches long. We are very pleased with his weight gain and his eating ability. I would however like him to become more efficient on the bottle in the next couple of weeks as I (Dad, babysitter and Therapist) will be staying home with him to help give him the head start that he needs.

I am looking forward to being with him during the days that Joy works. We are entering into a fun time with him as he is starting to interact with us by following us with his eyes, smiling (randomly, but smiling none the less) and cooing. He loves music so we dance a lot. I'm unsure how long I will be with him because of a few jobs in the works so we will see what happens. His well-being and health are our priority though.

As for new pictures, I will try to get some up by the weekend. My classes have occupied most of my time as you can see that I am not posting as often. We continue to give thanks to the Lord for His protective hand over John. We consider him to be much more than what we expected. Thanks also to everyone who visits our blog. May it be a blessing to you, it is fun writing it. Feel free to email me or leave a comment, we would like to hear from you. Take care for now...Jay

Friday, September 5, 2008

We Took the First Step

As Joy and I continue along this path, we are relunctantly becoming more accepting of the diagnosis although we all love and enjoy John very much. He is a new ray of light that has shown on us all. Having our other children who are independent and that can enjoy him with us has definitely been a positive for having John at this stage of our lives. But as he grows, we see more features that remind us of his diagnosis and that hurts.

Although, I have been working with him here at home on a daily basis, I felt the need to have someone else take a look at him for me. I realize the my lack of objectivity may get in the way of me seeing all of his needs and I surely would hate knowing that I overlooked something. Also, a parent can sometimes take on the attitude of not causing the child to cry; however, most of my patients think that I am a sadist anyway so I don't think I would have that problem.

With that said, I called a friend of mine the other night who is a Pediatric PT to talk with her about John. She knew that we were expecting a baby but not sure if she knew that the baby was born with Ds. It was a difficult call to make because I knew that it would mean that I would have to discuss his disabilities with someone other than my wife. We are going to take John to see her next week which we know is the best thing for our son, but we're not sure if we are ready emotionally - partly out of fear of what we will discover. I know that makes no sense at all on a non-emotional level because it is crucial that we discover his disabilities early so we can work on them.

So remember us next week when we go to see her. We want to be open and teachable so that we can do the right thing for John. Maybe this will be what I need to let me know that I can relax. I can sometimes be intense with him in focusing more on the goals than on just having fun with him. Sometimes I feel that if I work with him enough, I can make him just like my other children.

Tuesday, September 2, 2008

What To Do?

When Joy and I had first discovered that our child may have Down syndrome, there were many people that were very supportive of us and there were also some that said things like 'I'm sure you'll do the right thing' and you knew what was meant by this statement eventhough the word abortion was not used. And I must admit that those early days were very scary and dark days for us. Joy and I were used to being around children with varying degrees of disablity, but in our work we mainly saw the kids with severe disabilities. While it was good that we had the exposure, our experience of dealing with severely disabled Ds children worked against us. Thoughts of raising a child who was unable to interact or learn or to be able to be independent one day was very scary to us. Being faced with this challenge made us realize how a person could choose abortion.

To hear the doctors talk and to read what some of the research had to offer gave us
more questions than answers. But Joy and I had made a commitment way before this crisis in our life ever came that abortion was never to be an option no matter what. This is that same thinking that we had when we told each other and God that we would never divorce, no matter what. We knew that if we waited until we got to the crisis to make our decision, we would probably make the wrong decision, therefore it was important for us as a couple to decide beforehand and to stick to our commitment.

Also, we realized that no one knew our little boys formation and his future except God Himself. It is true that all the doctors are able to give an educated guess based on their experience and some from what is seen through ultrasound and other tests, but just as we have seen in our situation - they just can't give you a complete picture of what is going to happen. And no one could have predicted how much we enjoy our beautiful little boy.

Also, there is a greater Physician than our earthly physicians who know that child that you carry. He also knows the heartache that we as parents carry.

John has been a blessing to us all and a real source of encouragement to those who know his story. As of now, John has not shown any delays and moves and kicks just like any other baby. He is becoming more interactive with us as days go by. We don't know what tomorrow holds and we know that there will probably be delays that will come, but we aren't going to let worries about the future spoil our enjoyment of the gift we have right now. And the bond we are forming now will help us through the challenges that lie ahead.