The Softer Touch of a Sister

Juli loves to spend time with her brother just cuddling with him or dancing to music with him. On this day, John and Juli were enjoying moving to the music. We introduced each of our children to music early in their lives. Music, like laughter is a common language that we all share. So before they could speak, music was used to communicate love and expression. The change in rhythm, tone and speed seem to challenge their little minds. When music is either played or sung for John, he focuses intently on your mouth as you mouth the words. As he has gotten older, he is beginning to pucker his mouth and give sustaining coos as if he is trying to sing along.

The Love of a Brother

John becomes more a part of us with each passing day. It is becoming more and more difficult to remember what life was like without him. He has definitely won our hearts.

The other day, my two oldest boys and I were having a conversation about their futures and their interests. Both of them are high achievers, have always done well in school and have BIG dreams which I have always told them that they have the potential to do whatever the Lord has for them to do. But that is not the story. The story is that both of these young men love their brother John. They are aware of his diagnosis (heck, George has researched Ds and probably knows more about it then I do). They also realize how blessed John is to be as healthy as he is right now but they also understand his potential may not be as great.

John's future was brought up to which both of my boys stated that they would be willing to take care of John if he were not able. Now I realize that we are looking far into the future but it just made me glad that my boys were gaining a sensitivity in that direction. It is this kind of sensitivity that John has brought to our family within the last 3 months.

Above are a few picture of our conversation. As you may can tell by our stories and pictures, John goes everywhere we go.

New Pictures and Other Ramblings

I realize it has been a while since I have posted pictures of John. So here are a few taken the months of October and November of John at play with us. With this crew, the poor boy doesn't get any rest. Last weekend he went down with my wife and daughter for the annual crop till you drop weekend for the Hill ladies. Joy said that he had so much stimulation that he didn't sleep at all Saturday. As you can see in the pictures, John is very alert and just like his siblings, he doesn't want to miss out on anything or anyone talking with him. Maybe that's why John sleeps so well in the mornings for me. His siblings have him going from the time they come home from school til the time they go to bed.

John is doing well and we see changes in him daily. I was glad to have them all back on Sunday but enjoyed the weekend with my boys. But we are entering a new stage of life in this family. A stage where new found independence calls my oldest boy (age 13) away from the nest more and more. Either he has something to do with friends at school, a basketball game, etc. Last weekend while we had our weekend together, one of my boys had a soccer tournament while the oldest one took part in a nearby Veterans Day celebration at our Veterans Wall (he thought of you John). I don't mind that he is so active. All I've got to say is he will be able to drive in 3 years - we are all looking forward to that change.

I think last weekend was also good because it gave my side of the family time to interact with John. Often times, through no fault of our own, we have preconceived ideas about children with Down syndrome. And often times those preconceived ideas are not as accurate as we are led to believe, so I am glad to share John with people every chance I get.

Lazy Baby

Recently I was part of a conversation with a new Mom concerning her child with Down syndrome and the trouble she was having getting her child to nurse. This lady was given the advice that there were no lazy babies and that if a baby didn't eat, there must be a reason. I would agree with that if we were talking about a child who did not have Down syndrome. But when it comes to children with Down syndrome, laziness, unfortunately, is a reason.

This is probably not the case with a non-Down syndrome child. With my four healthy children, practically everything came naturally. They learned to nurse easily and they met their milestones on or around the time supposed to. I didn't have to push them along. They didn't need to woken up at feeding time. One thing I have learned in my physical therapy career is that people are not inclined to do what comes hard for them whether it be babies or adults.

This has been one of the more difficult concepts for people to understand; I know it was difficult for Joy and I to learn this when we began our journey. So I will try to explain by telling a little about our experience with John.

When John was born and Joy started nursing him at the hospital, John had trouble latching on which I have written about in earlier posts (refer to August postings). Here we are at 3 months of age and while nursing and bottle feeding is going well and John is gaining weight, it still requires a lot of time and patience some times for us to get through one bottle (4 oz.). This being the fact that children with Ds have low muscle tone which causes them to tire quickly.

John would also sleep through feeding times which we learned early on that Ds children tend to be very sleepy. As we saw his weight either decreasing or staying the same, we knew that we had to start waking him up every three hours to feed him. This is where raising a baby with Ds was more physically exhausting. This went on for about a month. Something with John just seemed to click and he began waking himself up to feed. I am happy to say that at 3 months of age, we don't have to be as diligent about waking him up although there are still days that he sleeps more than normal during the day and I get paranoid about him not getting enough to eat but usually he will make up for lost time later that evening. And also, he is gaining weight which I check it frequently.

I have also noticed this in his physical therapy treatments that he and I do. He is much more quick to give up on a skill whether it be holding his head up, twisting his body, etc. He may start out good but when the going gets tough, he is quick to lay his head down on the mat and go limp on me.

Well, I am here to tell you that he was born into the wrong family for that. This Daddy does not give up. There are some that will say that I push him too much, but when they see him, they can see the progress that he has made - and it hasn't hurt him. The bond that John and I share is probably stronger today because of the time that we spend together. He knows that I love him.

So, in answer to the question whether or not there are lazy babies, my answer would have to be yes. But just because they may be lazy doesn't mean they have to stay lazy and that is my goal for my son. I want to teach him that we don't give up just because something may come difficult.

The Friendship of Blogging

These blogs are exceedingly charming. These kind bloggers aim to find and be friends. They are not interested in prizes or self-aggrandizement. Our hope is that when the ribbons of these prizes are cut, even more friendships are propagated.

Thanks to Jeanette at DownRight Faith for passing this on to me and for naming me as a friend. Through the experience of having a child with Down syndrome, new avenues for developing new friendships have opened for Joy and myself. Blogging has been a way for us to not only write our thoughts and to keep friends and family abreast of what is going on with John, but also to make new friends and to share our story of God's gift to our family.

There are many bloggers that we have met that are worthy of your time. They are parents who have a heart for their children and to raise awareness for the abilities of children with Down syndrome.

Therefore, I would like to pass this along to:
1. Becca at The Bates Motel. She has been loyal to read my blog and to communicate with me. Thanks for sharing your story.

2. Angela at The Amicks. Angela is one of the first parents that I got to know online when I first started on this journey. Her blog is filled with humor and transparency.

3. Lisa at Finnians Journey. I enjoy reading her blog. They are fresh and honest. Thanks for your insight.

Now if I could just find some Dad's out there!

Quick Update

John was 3 months last week. He weighed 11 lbs. 7.5oz and is 22 inches long. He continues to eat often and takes about 4 oz. 3 - 4 times a day from a bottle (Playtex Nurser - the Slow nipple) and then usually takes another 6 -8 oz. from Joy before going to bed. He did have a couple of days where his tummy was upset (Daddy's fault: I fed him some bad milk one morning - just about 3 or 4 slurps though) and didn't eat very much during that time but he has bounced back. He has pretty much settled into a pattern of sleeping 6 - 7 hours overnight without waking up. So I would say that John is doing well so far.

This weekend, Joy took him and my daughter down to a scrapbooking get-together with my sisters and Mom. It gave me a chance to have a weekend with my boys and a day today for myself which was good. It also gave my family a chance to be around John and see his abilities first hand instead of reading about it from a Dad who tends to be biased. I believe Joy was planning to start on putting some pictures of John in a book. Juli was more less planning to have a good time seeing her girl cousins. So have fun there, just come back home to us - we all miss you.

Speaking of Polls

The last poll that was taken on this blog asked the question whether or not you provided your child with any type of physical therapy outside the timed session with a Therapist.

Out of the 6 people that voted in the poll, all 6 people said that they provide their child with some sort of physical therapy in between sessions. This is a good thing and will benefit your child in ways that you may not imagine right now.

For those of you that do not, let me encourage you to ask your PT about what you can be doing with your child in between sessions. Most PT's will be very glad to give you some homework. If they are not, it may be time to find a new PT. Our children need this challenge of PT in their life on a dailybasis.

Knowing what to do is often times one thing that people tell me as to why they don't provide treatment at home. It really doesn't have to be called physical therapy. There is a lot of things that can be done by just providing the right kind of play.

Good luck with this and thanks for participating in the poll. In a future entry, I will address some of the things that John and I are doing together. I would also like to read some of your stories, either as a comment or an entry on your blog.

Tools That Have Helped

I thought that I would add a link to the tools and techniques (on the left) that Joy and I used early on with John and helped us through many difficulties. I didn't intend to write a new post on this but noticed that some of the links were not clearly written and I wanted to be able to have this information out there in case you would like to use them. I wish that Joy and I had had this information readily available to us so here it is.



The first is the Hazelbaker FingerFeeder. I linked this to a picture of the label. This was used early on when John was having trouble latching on to the breast. Joy has nursed each of our children and it was never a question about whether or not to nurse John. But when we were faced with his inability to suck, we knew that we had to act quickly. The name of the game here is to get nourishment into him/her. Even though we felt the urgency to get nourishment to him with whatever method we could, we still didn't give up on the nursing. And that is where the tongue exercises began.

I'm not sure where these tongue exercises came from or if they are formally taught but they helped us tremendously by teaching John tongue placement while he sucked. This method requires you to use your pinkie finger upside down (nail down) and insert it into his/her mouth. Place the pad of your finger up at the roof of the mouth and in the middle. He will begin to wrap his tongue around your finger and you will feel him latch on. Joy and I would let John suck at the finger for about five minutes. Be patient, it will not happen quickly. We would do this every feeding time prior to putting him to the breast. As time John got more efficient at performing this exercise, we would still begin with our finger in his mouth as normal, but we would begin to slowly pull the finger out of his mouth in order to train him to elongate his tongue. Within a month of being disciplined at doing this, we noticed that John didn't require as much of this to be done before putting him to the breast. John is now 3 months and takes the breast and the bottle without difficulty.



Next is the Jungle Play matby Fisher Price. Let me preface this section by saying that John had no heart issues at birth, therefore we were able to start working with him early and with no precautions. If you have question about whether or not your child is healthy enough for this activity, please check with your Pediatrician or other medical professional before beginning vigorous activity. This was given to us as a shower gift. It is made by Fisher Price and there are pictures of it in the picture gallery. The name brand of model is not important here. There important thing is to provide your baby with stimulation and what we found was that the more the better. The play mat that John uses has music, blinking lights, a mirror and hanging rattles. You can set the music to play continuously or to start when he kicks or hits something on the gym. This has proven to be a fun toy and we use it every day.



Finally, there is baby massage. We began this on day one at the hospital whether it was in his sleep or with him awake. We would strip him down to his diaper and lay him on his back and just caress and massage every part of his body beginning with his face and working down. We didn't use any oils and really didn't use any formal method of doing this. We just made sure that we covered all or as many as we could of his muscles. We also didn't use deep pressure but didn't use light touch either.

I hope this is helpful. Feel free to contact me if you have any questions or comments.