Just like other years during this time, I take some time out of my day/week to look back on the year and think about the direction of my life during the year. All in all, it has been a pretty good year for me. I have added another candle to my birthday cake, lost more hair and added number four son to our household of seven. All of that and I'm still not sure if I am any wiser although it would depend on who you ask.
One of my sons suggested this morning at breakfast that we go around the table and say 5 things that we remember most about the year. I was impressed that he came up with this so I was quick to oblige him. Well, you know kids, they don't always say what you think they will say but there was one thing that was unique to all four and that was the addition of John.
This is a very kid friendly household. We have always welcomed each new child into the family with open arms. We are also known for having our kids' friends over for parties and sleep-overs so welcoming John into the family was very easy for us especially since he is so lovable. But what was not so easy for us and continues to be a stumbling block for us (although the block is becoming smaller with each passing day) is the fact the he has Down syndrome.
Joy and I chose to go ahead with prenatal testing just so we could limit the
surprises at birth. Looking back, I don't think we would have chosen any different. This time afforded us to adjust ourselves to the fact that we may not be having the typical healthy little boy that we took for granted we would always have. This also gave us a time to discuss with our children the possibility of having a special needs child and what that would mean.
So when John came on July 29, 2008, we were all prepared - not really. We may have been prepared educationally but we were not prepared emotionally. When John came into the world, there was no crying and he was noticeably more floppy than our others. I can remember just feeling a little numb to what I was seeing for even though I saw all the results from every test that was conducted and saw every ultrasound that we had done (and we used ultrasound very generously), I still held out hope that my baby was not Down syndrome.
Well, speed up to where we are now which is the 5 month marker, I really am unable to see it any other way. I fall in love with that little boy each and every day. He makes me proud (and I might add that he makes me look good as a Therapist). He is all heart - we call him our relational baby because he loves to smile and cuddle. He has the ability to soften your heart and to cheer you up on bad days. Because even on a bad day for him, he still manages to flash you a smile.
Yes, this has been a difficult journey that I probably wouldn't have chosen for myself. I can tend to be a rather intense person as I probably was during the first 2or 3 months of his life as he is a very stimulated and therapied (if that is a word) baby. I have taken the responsibility of seeing that John receives the best start in life that I can give him. I used to worry about his future - what he could do, how would he make a living, what would happen to him after my wife and I were gone. But I am learning to take it one day at a time - to give him what I can for that day and hopefully that will help him to achieve more than what was expected.
If you have not seen the video clip entitled Dreams in Reality, I would urge you to see it. It will encourage your heart and hopefully open your eyes to the potential wrapped up inside our children.
My life has changed in so many ways and sometimes I wish I had my old life back but I am learning to accept and to learn from my circumstance. My faith tells me that God is in control and that He understands and cares about my life. And that everything happens for a purpose and I believe that purpose is that we would come to see our imperfections and mortality; that we might come to understand that we need a Saviour to save us from our mortality.
Thank you all for visiting my blog this past year. I have enjoyed writing it and meeting new friends. If you have never commented or emailed me, I would invite you to do so as it encourages me to know that you are out there and that my thoughts are appreciated. Thanks again and we will see you next year. May God bless each and every one of your families.
Wednesday, December 31, 2008
Just like other years during this time, I take some time out of my day/week to look back on the year and think about the direction of my life during the year. All in all, it has been a pretty good year for me. I have added another candle to my birthday cake, lost more hair and added number four son to our household of seven. All of that and I'm still not sure if I am any wiser although it would depend on who you ask.
This has been a good week for John. John has loved the attention of his siblings this week. Whether they are playing Wii or a board game, they have enjoyed (for the most part) having John with them. This alone has been great therapy for John because it means he is either in the Bumbo chair or on his belly on the floor. It has been great for me also because they do a lot of changing and feeding him for me. So I have uploaded a couple of pictures of John participating in time with the family. We love him more every day.
Saturday, December 27, 2008
Christmas is always a good time at our house as there are many people to see and to refresh old relationships. This year was no different. After having an intimate family time of breakfast and gift exchanging at our house Wednesday morning, we loaded up and headed down to spend Christmas Eve with my parents and 4 siblings.
All of my siblings read my blog and knew about Johns' diagnosis when we were first told. And all of my siblings except my brother John have met him so it was a time that we both had looked forward to for a while. Earlier this year, he and his wife had their first baby girl who is one month older than John. We both looked forward to bringing these two together for the first time. It is always great fun at our house when the cousins get together.
The two newest of the cousins got along as well as a 6-month and 5-month old can get along and there were many opportunities for photos of the two of them together. It was good to see the two of them interact with each other. It was also good to see how loving and accepting everyone was to my John without the focus being on the fact that he has Down syndrome. Yes, there were times of swapping of information from our experience with John but that wasn't what defined him. What defined John was his warm personality and his plentiful smiles.
John didn't need me to explain his diagnosis to people in order for them to understand him. As a matter of fact, my explanation probably would have just gotten in the way. John did a great job of explaining his diagnosis himself. It was good to see them enjoy him for who he is - a personable and interactive baby boy. This is one of the great gifts of family - to accept and love you just the way you are. Thank you my extended family for this gift.
Wednesday, December 24, 2008
I'd like to use this post to wish everyone of you and your families a heartfelt Merry Christmas from the Hill Family of Northwest Arkansas. May you be able to enjoy the peace and joy that this day holds. May you experience the love of family and friends. But may you especially know that you are loved unconditionally by the One who saw our need and gave His Son to become flesh and to die for us that we who believe in His name might live eternally.
Christmas time becomes so hectic and filled with lights, gifts, money and Santa that it is often times easy to miss the things that matter the most - our relationship with our Maker and with each other. I hope that you will be able to step off the treadmill of life and rid yourself of the stresses of the day, enjoy each other and be a peace with yourself and with each other.
The Hill Family of Northwest Arkansas
Saturday, December 20, 2008
Have you ever witnessed an adult with arthritic hips or knees that walk with a gimp, favors to one side or maybe walks in an unusual way? Do you understand why this occurs? It is because they are using accessory muscles in place of muscles that are normally used for that movement. Granted these people are compensating because of pain but the concept also applies to weak muscles. And this is a problem that children with Down syndrome face. While it is true that our kids will eventually learn to sit up, walk, run, etc., it is important that they learn to use the correct muscles for that particular exercise. You see, our bodies were made to operate efficiently whether it be to walk, run, ride a bicycle or whatever we do. For a child that has weakness of a particular muscle, he/she learns to perform the exercise using different muscles and therefore bypass having to use the weak ones.
While it is a temptation to allow the learned movements as wrong as they may be for the sake of meeting the milestone, we must resist doing this. While it is important to give praise for learning a new skill, it is also important to teach the correct pattern of the particular skill.
A few compensatory movements to watch for with children with Down syndrome are standing or walking with their feet and hips pointed toward the outside. This is called rotating the hips externally. Another compensatory movement is sitting with the lower back bowed outward. Having stiff knees is another way that these children compensate for weakness.
All of us as parents desire for our kids to meet milestones and are very happy when they are accomplished. But at the same time, we need to be aware of the correct way to move and the correct muscles that are used to produce that movement. This is where a trained Physical Therapist can help. They can assist the child in learning to use the correct muscle/s. After all, I think that we would all rather have our children learn to perform the movement in the correct way even if it takes longer vs. learning the movement incorrectly sooner. Learning to use the correct muscles for the exercise will benefit the child throughout life.
So I would encourage you to ask questions of your Therapist so that you can look for these movements during non-therapy times. One of the most difficult things to overcome is a child who has already built a habit of compensating.
Thursday, December 18, 2008
Let me just begin by stating that I have a new found respect for all of you stay-at-home Moms out there. It can be physically, emotionally and psychologically challenging which we husbands sometimes do not understand much less give allowances for that. Well, I am learning about all of those things and I want to share them here as an encouragement to other stay-at-home Dads.
As with a lot of men, I have grown up with the ideology of the man being the bread-winner. This message is heard loudly in Christian communities yet is communicated in other areas of society. It is just presumed that the man has his career which consists of getting up every morning, going to work till 5:00 or 6:00 while the Mom takes care of driving the bus for the family. This thinking is confirmed to me when I pick my children up from school and see all of the Moms in line there. The movie Mr. Mom comes to mind although I am not so far removed from dropping off and picking up my kids from school that I have driven the wrong way in line. I have however, been guilty of dressing John inappropriately for the weather, left him in a dirty diaper longer than should have been or squirting snot back into his face with the bulb syringe. I have learned over the years of kids that mistakes are just the nature of the game.
The mistakes, the physical demands of being at home are not a problem for me. Heck, I think my wife will admit that I can clean a house better and faster than she (thank you Mom). But the emotional and psychological games that a stay-at-home Dad goes through is difficult at times, especially when he thinks he is not serving his family in the capacity he thinks he should.
Swapping daily activity at a paying job to the daily activity of changing diapers, feeding baby, doing housework, etc can be hard on the ego and difficult to navigate for us men but I am trying to resign myself to the fact that this is where I am needed at right now to best serve my family. I have read and believe that we men are looked upon to lead our home but being leader doesn't mean just being the bread-winner for the family. By being at home, I am better able to have a meaningful, influential role in the life of my kids not to mention being able to give John a head start in life that he probably would not get anywhere else.
Don't misunderstand, I very much enjoy having John to myself all day as there is a bond that is being created between us that will serve us both well in the future. But there are days where I miss being out there doing Physical Therapy and relating with people who can actually talk back in a language I understand not to mention making money.
I often remind myself that this is not my lot in life for the rest of my life, just my lot in life for right now. To all of you stay-at-home Dad's out there - more power to you. You have an opportunity with your kids that will have lasting benefits. May our experience help us to be more sensitive to our wives/other Mom's who do this daily and have done this longer than we have.
In light of this post, a post has been set up that asks for the opinions of men and women toward SAHD. Your vote and opinion is greatly appreciated. I must say that writing this post as has writing other posts has been a good outlet for me away from John for a while.
BTW, John had recovered from the mashed potatoes Dad fed him by around 12:00. It just made for a long evening. I will be staying with the single-ingredient foods from now on.
Tuesday, December 16, 2008
Here we are at 10:00p.m. and we are all ready to go to bed, except John that is. He is wide awake with the belly rumbles. He has spit up on everyone that has held him and then spit up on the floor after my daughter put him down in order to clean herself from his spit-up which just grosses her out and she is ready to hand him off real fast.
This isn't John's typical night. He is usually in bed by now and sleeps until 6:00a.m.. But tonight, Dad messed things up by feeding his boy mashed potatoes for supper. Hey, before you tell me how smart that was, let me tell you that he was enjoying them very much. After tonight though, I think we will hold off on table food just a while longer.
So just a word to the wise - don't feed your baby table food at 4 1/2 months unless you want to wear it.
P.S. He is still smiling at me though.
Goodnight and thanks for reading.
Monday, December 15, 2008
Each year, we put up a real tree for Christmas so we usually wait until a couple weeks before Christmas to put it up so it doesn't dry out so much. Well, last night we put up our tree and really had a great time of enjoying each other. I love my family and can't really imagine my life without them. I hope that you will be able to get off the treadmill of life long enough this Christmas to enjoy your family.
Saturday, December 13, 2008
As we travel our individual paths of life set before us, we all have different experiences that mold and teach us. The goal of life often becomes confused with personal achievement and the hording of material possessions. But sometimes, there are little reminders that come our way that remind us of the importance of the relationships we have with one another. Yesterday that happened to our family.
I have often said and have maintained the belief that we are a blessed family. That blessing is not because of good income, a nice house, cars to drive, a nice school for the kids to attend, plenty of food to eat, etc. but because of the loving and supportive relationships we have with family and friends.
Yesterday, that love and support came in the form of Christmas packages on our front porch. When we got in yesterday from work and school, there were packages of gifts and homemade candies that someone left on our front porch that were individually wrapped. Each gift came with a tag that told who they were to but only said that they were all from "Santa". So Santa, if you read this blog - THANK YOU!!
May we all be reminded this Christmas of the importance of relationships in our lives. And the most important relationship being that God loved us so much that He gave His only Son to die for you and for me.
Wednesday, December 10, 2008
It's been a while since I have posted and although I have missed posting and reading the blogs that I read, it has been a good break for me. There have been many changes with John that I can't get it all down on one post.
First, John continues to do well with his development. He was 12 lbs. 6.5 oz last week when we had him weighed. He has his 4 month appt. tomorrow with the Doctor (and no, we don't use Mom as our personal Doctor since she is a little less objective). So we will see what he has to say. Although Joy and I use a Physical Therapist and Doctor outside the family to see John, we still keep close tabs on his development by way of weekly weight checks and daily Physical Therapy.
Speaking of Physical Therapy, I am very pleased with John's progress. Things that we have been working on are gaining full neck extension, strengthening his shoulder and back muscles. Even though John is doing great at holding his head up and has been for about a month, it is still difficult for him to gain that last few degrees of full extension. To help him with this, we use the airplane.
The airplane is where I hold him horizontal in the air in front of my face and talk or sing to him. As he holds his head up to look at me while in this position, he fully extends his head while extending his arms and legs also. This not only builds muscle in the back of the neck but also builds muscle in his upper and lower back which will benefit him as he continues to learn to sit.
That's right, we are working on sitting so I bought him a Bumbo chair to help with this. This chair has been a great tool for him because it gives him just enough support that keeps him sitting in the chair but some independence to where he has to work to keep himself upright. We have found this chair to be especially helpful in comparison to other chairs because he can use the pommel to push himself upright. I understand that these are around $40.00 but I was able to get mine off Ebay for half the price.
Another thing that we have begun working on using a spoon to eat rice cereal. This is something that we actually started about 3 or 4 weeks ago with an empty spoon just to get him used to the feel of the spoon in his mouth. Now, we have introduced rice cereal on the spoon and it is actually going pretty well. The first week, he didn't act very interested much less knowing how to use his tongue. But now he is more interested and opens his mouth for the cereal.
Although I am feeling more and more like I am drowning in a sea of baby land and would like very much to get back to work, Joy and I remain committed to giving John the best start that we can give him. Right now, we both feel a little uneasiness about leaving him on a full-time basis. We have a few ladies that have kept him on occasion for us that are willing to keep him some for us so we are considering our options. To tell you the truth, John and I have developed such a bond, it is difficult to even think of leaving him. To see him light up when he sees me or hears my voice just really warms my heart.
With all of the progress that John is making, our hearts continue to be very thankful to Him for blessing our lives with such a healthy Down syndrome baby and for giving him the strength and motivation to keep working. Thanks for all of your prayers and concern for John. He is truly blessed with people who really love him both here in this house and friends and family. Thanks again for reading.
Saturday, November 22, 2008
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.
Monday, November 17, 2008
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.
Wednesday, November 12, 2008
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.
Monday, November 10, 2008
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.
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!
Saturday, November 8, 2008
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.
Tuesday, November 4, 2008
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.
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.
Friday, October 31, 2008
This blog is not meant for any other purpose than to promote awareness of Down syndrome. However, as I read this article recently and thought about the possibility of our healthcare system falling into government hands, I realized that I should post this here. This is by no means an lesson on how one should vote. This is however meant to inform all of us of what happens when we entrust the government with such things as healthcare - better known as socialized medicine.
Doctor denied residency due to Down syndrome son. 31/10/2008 4:12:00 PM
The federal government must overturn an immigration department decision to deny Australian residency to a German doctor because his son has Down syndrome, the opposition says.
Bernhard Moeller moved with his family to rural Horsham, in central-western Victoria, two and a half years ago to help fill a doctor shortage.
Dr Moeller has a temporary 457 visa which is valid until 2010, but has been denied permanent residency ....
As we each exercise our priviledge to vote next Tuesday, may we all consider beforehand the direction in which we are agreeing to go. It is easy to get caught up in the drama of it all and gloss over whether or not our convictions are heard. Let your convictions be heard in this election.
Hello fellow bloggers. It is a beautiful day here in Northwest Arkansas and I feel like I have been renewed. I began a new class last evening and welcome the new direction. I love being home with John and working with him. He brightens my day and makes me smile when I am down. But this new class has given me an outlet that I so desperately needed in my life in order to help bring balance to my world. It is so easy for us as parents of children with special needs to give the majority of our focus to our child which it has been easy to find myself doing these last 3 months. The time spent with John is not in regret. Both of us have learned so much and he has progressed a lot. But the mistake that I have made is not creating an outlet for myself away from John. He has consumed me in many ways - I talk about him, I work with him, I read about Ds on the internet, etc.
And this has caused me to step back and reevaluate my identity as a parent of a child with special needs. Am I going to let Johns Ds consume me and take on his problems as my own? When my friends and family see me, do they see me as an individual or as an advocate for Ds? I'm not sure that being an advocate for Ds is my role in life. I am me, Father of 5 beautiful children of which 1 just happens to have Ds and Husband of a beautiful wife. And this is what I need to be for the sake of the other relationships in my life and for my own emotional well-being.
John does take a lot of my time; probably more time than the typical baby this age would take. But there also needs to be times in my day where I am able to step away from the situation and maintain those connections to the typical world.
Thanks for reading. I have enjoyed writing down my thoughts and being challenged by some of you that have been on this road for a while. This particular blog today was inspired by my new friend from Virginia at the Bates Motel. Please go by and visit and tell her hello. I'm sure it would brighten her day.
Thursday, October 30, 2008
Last night, John went to bed around 10:00 and slept until 6:00 this morning. He of course woke up starving which is not unusual for him. After eating, he and I made breakfast for the others while they all got ready for their daily trek to school/work. I have him right there in the kitchen with me so he is able to see me and I can talk to him which he really enjoys it when people talk to him. His face lights up and he becomes full of facial expressions.
After our dropping off the other kids at school, he is back down for another siesta. I usually do not like him sleeping this much but after 3 months, he self-regulates more than he used to do and doesn't need me to wake him up. He used to sleep through feeding time and bowel movements which now wake him.
Speaking on my last post of change, I begin a new class tonight after taking a little time off with John. It sure was nice not having to read or write a paper. It also gave me time to focus on John and adjust to his needs. But now I am ready to get back to it and get this behind me - so is my wife. I would like to move into a managerial role of health care or either entrepreneurship so I am finishing a degree in Business Management and should be finished Christmas of 2009 - we'll see.
Thanks again for reading. I have enjoyed getting to know some of you via email and blogging. Have a good day
Wednesday, October 29, 2008
Hello fellow bloggers and friends. This week has given us a taste of winter with temperatures falling to the mid 20's overnight. It has made me glad that I spent the time earlier last month cutting and splitting firewood. With the chill in the air and the leaves falling from the trees, it makes me think of the reasons I like Fall: the beautiful colors, hot chocolate, fires in the fireplace and the holidays just to name a few.
The changing of the seasons tend to come around just when my attitude needs it. Just when I feel the monotony of the hot weather of summer setting in, the seasons change and my attitude is renewed. This changing of the season is also translated into my personal life.
As I reflect upon the last 11 months of my life, I see the birth of John as being a 90 degree turn for my immediate as well as extended family. I must add here before I go any further that this change has been one of the most significant positive changes in our lives although the view of this being a positive change has only occurred within the past 3 months. Seeing that this is a positive change also grows within us on a daily basis as we care for John and allow him to slow us down and to teach us that there is more than one way to live and enjoy life.
This change is unlike other changes that occur in our lives. This change is more of a surgical procedure of the heart. It has changed my perspective forever as I am sure it will continue to change more as he grows and we face challenges together. As I look back at the last 3 months with him, I see how much of life I take for granted. For example, with my other 4 children, therapy wasn't needed and they learned on their own at pretty close to the exact time they were supposed to. They sit up on their own, they ate solid food when they were supposed to, walk, ran, jumped, etc.
Now I know that his future is still to be determined but these last three months have revealed more delays than my other children which I am fine with. I know that he will achieve in his own time but it has caused me to slow down and take a deep breath. And it is this slowing down that is bringing about change in my heart and causing me to see life in a different way.
This child that the Lord has blessed our home with came with a message. And the message that I have learned up to this point has been to slow down and rethink what it is that is important in this life: relationships or personal achievement?
Sunday, October 26, 2008
John is now able to maintain good head control from left to right. He does however still have difficulty with full extension (bringing his ears directly over his shoulders). When he attempts full extension, his head suddenly drops backward so we watch for this and try to protect this from happening.
With that being said and since he is showing good control even if his head doesn't have full extension, we have started working with him on his trunk control. We do this by working with him on our lap with him in the sitting position. Its that same position as you would put someone in to play patty-cake with. We will gently bounce him. We start with our hands up under his arms as to provide full support of his trunk and we gradually move them down toward his hips. Even though he doesn't have enough trunk control for us to be able to move our hands to his hips, that is the goal.
Another technique that we use is to lay down with our hips and knees bent so as to make him a recliner to sit in. As he sits on our stomach, we hold his hands and allow him to sit up with us just holding his hands.
Trunk control is also addressed when he plays on the floor. We put him on his stomach and place his elbows on the floor under his shoulders. This not only promotes good head control against gravity but also assists in good upper trunk control.
These exercises have given us good results but the ability of controlling the head needs to be taken into account before progressing through these techniques. We don't limit practicing trunk control to "therapy times" but also in how we carry him. Carrying him upright on our shoulder vs. letting him lay in a car seat promotes more of an upright posture. When carrying him in on our shoulder, we place one hand on his lumbar spine which prevents the spine from bulging outward.
We also work on Johns pre-verbal skills by talking to him and singing to him. He coos to us and we coo back. We talk to him in the mirror which helps him to see his different facial expressions. I realize that I am probably intense about his therapy and that he will probably learn to do this eventually but it is just not my personality to just let it happen in its own time. I want to help him perform as well as he is able and he has shown me that he is capable of what is given to him.
Thursday, October 23, 2008
I thought that I would share this light-hearted experience here since it was very funny to my wife and will probably be remembered around here for a while.
The other morning as we were all getting around breakfast and preparing to leave for work and school, I quickly pulled a onesie out of the drawer for John and put it on him not noticing that anything was out of the ordinary. We went on our way and did our usual daily tasks. I even went in at school to pick them up for school and said hello. John is usually the center of attraction at our school and moms just can't resist holding him and passing him around which John is very agreeable.
When my wife got home, she asked who put this onesie on John to which my children quickly pointed to me. She laughed and said that he had it on backwards. He had been like that all day and either no one noticed it or didn't want to tell me I had messed up. I assume it to be the former because some of the Moms that I know are not afraid to point out to a Dad like me when I have "misdressed" my child.
But he was fine. Other than going through the day with a wedgie, no harm was done.
Wednesday, October 22, 2008
Recently, I posted about Down Syndrome Awareness Month with the challenge of getting to know a child with Down syndrome other than your child. The question of the experiences that we have with other children with Ds was also asked. Recently, I was asked about my experiences so I will share in this post.
My experiences with children with Down syndrome have not been personal and I must say that before John came into our life, children with Down syndrome, or other disabilities for that matter, were not very visible to me. Yes, I have worked with many children with disabilities in my career as a Physical Therapist Asst. but outside of the clinic, I didn't seek them out or take the time to get to know them which I am learning now were missed opportunities on my part.
In this setting though I have learned many things about human beings and how we all deal with our disabilities whether it be Ds or something else and that is the human spirit is alive and well in all of us. I have seen how people are able to rise up and meet the challenges that are set before them if they are just given the opportunities. While time lines to meet these challenges are not the same for everyone, I still love seeing people rise above the limits that are often set for them.
On a personal note, I remember seeing a girl with Down syndrome who was with a group of nursing students at the hospital. It was about a month before John was born and I was still working at the hospital. Every so often the hospital hosts a group of nursing students for one of the work rotations. There was a group of them doing the initial orientation and I politely said hello as I walked by. But as I walked by, I couldn't help notice a girl with Down syndrome in the group. She was a very attractive girl and seemed to get along well with the other girls.
I look back at the time as being the time that I came to understand that these children have potential that often exceed what people project. And that is the mindset I think we all should have in raising our disabled child. I'm not sure of Johns potential and I'm not sure I want to know. My goal for John and I challenge yours to be is that I want to raise John to be the best little Down syndrome child that he can be.
Thank you for your readership and comments. Reading your comments, blogs and seeing the pictures of your children are a source of encouragement to me and spur me to keep writing.
Tuesday, October 21, 2008
One thing that I have learned in my life is that we all have the same needs in life and are all searching for the same things in life even though some of us cover our needs better than others. There are for sure plenty of things in this world that are used to cover that need. What am I talking about? I am talking about the unconditional love of somebody whether that be a spouse, a child or God.
Since my wife went back to work and I have had the responsibility of John, I have had a lot of time to deal with his diagnosis. Yes, I am still adjusting to the way things are as this is a daily adjustment for me but that is another post. In my day to day dealings with John and seeing how he responds to me so well, I am enjoying that unconditional love from him as we all do with every child that comes into our life.
But when we consider the unconditional love of a child with Down syndrome, I think it may be a different kind of unconditional love as compared to a "typical" child. The words of Coach Stallings comes to mind. He was the head football coach for the University of Alabama in the Bear Bryant era and was the father of a child with Down syndrome. He said of his child (whose name was Johnnie) that he would come to him and give him a big hug and tell him that he loved him every day of his life. How wonderful is that? Isn't that what we are all looking for? But yet these babies are torn apart by the abortionist at an appalling rate. Coach Stallings' son passed away earlier this year at the age of 46 but yet his father tells the story of how his life along with the life of a whole football team was changed by the unconditional love of this man with Down syndrome.
So when I hold my John and he looks me in the eye and "sings" with me, I am touched by his unconditional love for me. I can feel my heart softening and changing because of his love for me. I can't imagine having this kind of love from him when he is grown and my other kids have grown up and gotten too busy to give Dad much time but I am looking forward to it.
So if you have just had a child with Down syndrome or have just been given the diagnosis, let this be an encouragement to you. The unconditional love that will come your way will change your heart and cause you to see life in a whole new way. Yes, the road is tough - emotionally and physically (my road has been more emotionally demanding and not as long) but if you are looking for a love that is unconditional, then the Lord just gave it to you.
Sunday, October 19, 2008
The other day was a weigh and measure day for John. John continues to eat like there is no tomorrow (he also poops like there is no tomorrow also). Johns stats as of 10/17/08 are:
Weight..........11 lbs. 3.5 oz
John continues to struggle with reflux. But by burping him completely after every feed, we are able to minimize the gagging. John has been more difficult to burp than my others. For some reason, it just seems to take him longer to work that excess gas out. About the time I think I have gotten them all out and lay him down, he begins to gag and I have to get him up again and continue burping him. And sure enough, here comes about 2 more burps.
If you haven't participated in the poll that was set up the other day that asks the question of Parental involvement if their childs physical therapy, then I would like to encourage you to do so. This is not meant to put anyone on a guilt trip but to point out the need and importance of your involvement. Also, for those of you that either have not taken the time or just don't know what to do, maybe we as parents can share ideas of how we play with out kids. After all, it is moreless how we play with them rather than having a scheduled physical therapy session with them. So come on, let me know. In future posts, I will begin sharing some things that John and I do together in our play time.
Friday, October 17, 2008
Do You Provide Physical Therapy To Your Child In Between Sessions? I realize that most children with Down syndrome are receiving Physical Therapy 2 - 3 times per week but that is not enough. Working in phyiscal therapy for a number of years, I came to realize that while there are some people out there that take our advice on daily exercise to heart, many do not take it seriously and therefore expect the Physical Therapist to do their "magic" with the child while seeing them 2 - 3 times per week. Everyone wants good physical therapy outcomes for their child but it is difficult to achieve these good outcomes in a timely manner when physical therapy is limited to 2 to 3 days a week.
Let me challenge you to become a major part of your child's physical therapy. Physical therapy can do amazing things and makes a big difference in lives. Your Physical Therapist is only a coach with knowledge and experience of what works. He/she should have knowledge of motivating the individual to be the best the he/she can be.
I realize what the Internet and books tell me about children with Down syndrome and how they will be or to what level they can achieve. Honestly, I try not to involve myself in learning all of that much less paying much attention to it. I am here to help John to be the best that he can be - whatever that is. And to tell you the truth, he amazes me each day. He is the one that motivates me to keep going.
I love Physical Therapy and the way that it makes my heart feel when I am able to help a person walk or to move a part of their body that has been restricted for years. I also love my kids very much so now that I have been faced with the challenge of providing my own child with physical therapy, I really want to give John the best that I have to offer. Part of my desire for this blog is to encourage other parents of children with Down syndrome to do the same. We may not be able to reverse the syndrome our children have, but I think that we can sure lessen the effects.
Feel free to share some of the things that you are doing with your child. And if you are not, then I would encourage you to ask your Physical Therapist to show you some things that you can be doing in between visits or you may contact me. I am not able to tell you what to do for your child, but I will be happy to share with you some of the things that John and I are doing. Believe me, its not rocket science.
I would really like to know how many of you offer this to your child. Please refer to the poll in the left hand column. My goal with this is to raise awareness among parents that their daily involvement is crucial in meeting goals. Good luck with this and thanks for reading.
Thursday, October 16, 2008
I just wanted to give you an update on John. He continues to do pretty well in his daily activities. John hasn't settled into a routine yet but he is moving toward that direction. About the only thing that we can count on at this point is that he will sleep 7 hours during the night beginning at either 10:00 or 12:00 which has been very good for all of us. As he is beginning to sleep longer at night, he is beginning to stay awake longer during the day which makes my day a little bit more involved with him but that is alright with me. I enjoy seeing him awake and active. As long as he is awake, I try and keep him stimulated. I will either sit him in the swing by the window so he can look outside or I'll give him his tummy time or I am sitting him on my lap and talking to him. Whatever we do though, it almost always involves music. Music is probably the number one thing that gets a reaction from him. I'll have to get a video up soon but he is beginning to smile and coo with the music almost as if he is trying to sing along with me. This just melts my heart and makes me glad that I have this time with him.
As far as his feeding is concerned, he is going through about 12-16 oz. of breast milk per 8 hour period. He still has a little bit of trouble latching onto the bottle nipple at times although he doesn't seem to have any trouble with this when he is overly hungry so I suspect that this is more just baby play than related to Ds. He asks for his bottle about every 3 - 3 1/2 hours and will down about 4 oz. in one sitting. I can remember when he used to have to be woken up to eat. Now he will let you know when he is hungry.
His tone continues to increase especially when he is at rest. I have noticed that he doesn't go quite as limp as before when he goes to sleep. He still has head lag and still lays like a frog (external hip and shoulder rotation) so when I lay him down, I try to either lay him on his tummy and position his hands up by his head or I will lay him on his side. By laying him on his side, his hips stay a little bit closer to neutral position. We still work on head control during tummy time or while he is sitting on my lap.
He continues to enjoy his jungle gym on the floor. He has really gotten a lot of use from that. The other night we saw a news clip of Gov. Palin in a Wal-Mart store talking with people as she was at the check-out. We noticed that one of her items was a jungle gym similar to Johns. Now I am sure that she probably didn't get the idea from this website but if she did and she is reading, we want to wish her the best with Trig and tell her that we think Trig will thoroughly enjoy that toy. I credit that jungle gym for assisting us in Johns progress. So, if you are lurking about out there, it is a privilege to have your readership.
My parents came up to see John last weekend. They hadn't seen him since his birth and it was good to be able to share him and his progress with them. This is a learning experience for all of us as we learn his abilities and his differences from other children. But all in all, I think they went away with an appreciation for where he is in life and how the Lord has blessed his life. Thanks Dad and Mom for your visit. Come back anytime.
Don't forget that October is Down syndrome Awareness Month. My admonition to you is to learn something about the syndrome that you didn't already know. Feel free to post them here for us all to read. Learning from each other is one of the goals of being connected. I know that I have learned some things from the blogs that I visit.
Tuesday, October 7, 2008
Today John had his 2 month check-up with the Pediatrician. John received a good report on his progress. However, it was pointed out to us that his trunk muscles are not as strong as they should be at this point and that would be an issue for him when he begins to sit. While I agree with this, I am not too alarmed by this as I knew that he would be delayed with this but I do see him making progress. My philosophy with him is as long as he is working forward toward his goals/milestones at a reasonable pace, then I try not to worry too much about his delays. So, we keep plugging away with our plan and our plan is to continue working with him in sitting while giving him plenty of time on his his belly. Even when John is napping, I try to lay him on his belly.
His weight and height measured around the 50th percentile on the growth chart for Down syndrome and the 10th percentile on the growth chart for non-Ds. This is not far off from our other children as they were always on the bottom end of the growth chart. Today he weighed 10lbs 6oz and he is 22 inches long. His birth weight was 7lbs 1oz and he was 19 1/2 inches long so he is growing at a good rate and for that we are thankful.
He also had his 2 month shots today which has made for a cranky little boy so it is baby Tylenol to the rescue. Today he had Prevnar and the combination Dtap/HepB/Polio. Right now, he just wants to be comforted. It's a good thing that Mommy is home today. Dads can provide a lot but when a kid doesn't feel well, there is no place like being in the arms of Mom.
Sunday, October 5, 2008
October is Down syndrome awareness month. I'm usually not a very big proponent of awareness months since I think anytime is a great time to make ourselves aware of a cause. But as it stands, I would like to challenge you to make it a point to learn something about Down syndrome this month that you don't already know. If possible, get to know a child or adult with Down syndrome. Feel free to share it here in the comments section - we would all benerfit from learning from your experience.
Saturday, October 4, 2008
Here they are. I know that I have been slow to get some new pictures up but I finally put some out there. John is changing so much and we are enjoying every minute with him. We truly are grateful for him and his abilities. The two albums that are new are labeled August 2008 and September 2008. We are glad to share what the Lord has done with all of you.
Hello again and yes I am still here. The transition of taking care of John on a daily basis has kept me very busy with little time for other things. I miss working at a regular paying job but I must say that staying home with John has been one of the best decisions that Joy and I have made. We have committed ourselves to giving John the best start in life that we can give him. This has not only benefitted us/me but we consider it as our gift to John.
When I think about the ways that I have benefitted from this situation, I think about patience. I think that I have learned and continue to learn to have more patience. For example, when giving John the bottle he sometimes has a little trouble getting things to work right for him to get a good seal. I am learning that sometimes it may take extra time from me to help him to get the motions but eventually he will get this. He doesn't require help every time he feeds but sometimes he just needs more time. Granted, this may be just normal baby issues but I don't remember us having this much trouble with our other children. Either way, we know that he is doing well with his feedings because he is steadily gaining wieght. Another issue that I have noticed from John that is different is the reflux issue. I had written about this before and yes we are still dealing with this but we now understand what brings this on and how better to help him. We have learned that after feeding him, he requires burping. Now I know as an experienced Dad that every baby requires burping after eating but John does not burp well at all. I may sit and burp him for 15 min with no burp but I know that as soon as I lay him down, he will have trouble. So I have learned that I need to do what it takes to get it out of him before laying him down.
John is also becoming very interactive. He loves to be sung to and I enjoy seeing the way he studies my mouth movements as I sing to him. His eyes become glued to my mouth motions until I finish singing. He is also begining to smile a lot. His smiles coos are wonderful and I love to hear and see them.
His head control is still improvng as he is better able to hold his head in mid-line and not let it flop from side to side. He still has a little troulbe with front to back but we continue to work on this and I am confident that he will be able to do this in his own time. I know that I may not be able to change his timeline but at the same time, I want to keep him challenged.
Also, I would like to challenge you to visit www.family.org and listen to the program entitled Remembering Johnny Stallings. This is a story of how a coaches son with Down syndrome impacted not only his Dad, but the world around him. Thanks Rene' for sharing.
Tuesday, September 23, 2008
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
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
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
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
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.
Saturday, August 30, 2008
When Joy and I were first learning about Down syndrome, we first learned there was a lot of misinformation and misunderstandings about the syndrome and the people that have this condition. Now that John is old enough to take out in public and just like all babies, they are often center attraction. This is great and we enjoy showing him off but the issue of Down syndrome comes up regularly in conversation. So for the sake of trying to get accurate information to you, I would like to list some Myths and Truths that pertain to the syndrome.
Myth:Down syndrome is a rare genetic disorder.
Truth: Down syndrome is the most commonly occuring genetic condition. One of every 800 to 1,000 live births is a child with Down syndrome.
Myth:Most children with Ds are born to older parents.
Truth:Eighty percent of children born with Ds are born to women younger than the age of 35 due to the higher fertility rates.
Myth:People with Ds have severe cognitive delays.
Truth:Most people with Ds have cognitive delays that are mild to moderate. IQ is not an adequate measure of the functional status of people with Ds. People with Ds have great potential if given opportunities.
Myth:People with Ds cannot form interpersonal relationships, marry or have children.
Truth:People with Ds date and marry and it is possible for women with Ds to have children. There is a 50 percent chance that the child will have Ds. While extremely rare, men with Ds can father children.
Myth:People with Ds have a short life span.
Truth:Life expectancy for people with Ds has increased dramatically in recent years. Most reach 55 years or older depending upon medical issues.
Down Syndrome Facts:
What is Down Syndrome?
Down syndrome is a chromosomal disorder that includes a combination of birth defects. Affected individuals have some degree of mental retardation, characteristic facial features and, often, heart defects and other health problems. The severity of these problems varies greatly among affected individuals.
What causes Down syndrome?
Down syndrome is caused by extra genetic material from chromosome 21. Chromosomes are the structures in cells that contain the genes.Each person normally has 23 pairs of chromosomes, or 46 in all. An individual inherits one chromosome per pair from the mother's egg and one from the father's sperm. When an egg and sperm cell join together, they normally form a fertilized egg with 46 chromosomes. Sometimes something goes wrong before fertilization. A developing egg or sperm cell may divide incorrectly, sometimes resulting in an egg or sperm cell with an extra chromosome number 21. When this cell joins with a normal egg or sperm cell, the resulting embryo has 47 chromosomes instead of 46. Down syndrome also is called trisomy 21 because affected individuals have three number 21 chromosomes, instead of two. This type of error in cell division causes about 95 percent of the cases of Down syndrome (2).
Occasionally, before fertilization, a part of chromosome 21 breaks off during cell division and becomes attached to another chromosome in the egg or sperm cell. The resulting embryo may have what is called translocation Down syndrome. Affected individuals have two normal copies of chromosome 21 plus extra chromosome 21 material attached to another chromosome. This type of error in cell division causes about 3 to 4 percent of the cases of Down syndrome (2). In some cases, the parent has a rearrangement of chromosome 21, called a balanced translocation, which does not affect his or her health.
About 1 to 2 percent of individuals with Down syndrome have a form called mosaicism (2). In this form, the error in cell division occurs after fertilization. Affected individuals have some cells with an extra chromosome 21 and others with the normal number.
What health problems might a child or adult with Ds have?
The outlook for individuals with Down syndrome is far brighter than it once was. Most of the health problems associated with Down syndrome can be treated, and life expectancy is now about 55 years (1). Individuals with Down syndrome are more likely than unaffected individuals to have one or more of the following health conditions:
- Heart defects. Almost half of babies with Down syndrome have heart defects (2). Some defects are minor and may be treated with medications, while others require surgery. All babies with Down syndrome should be examined by a pediatric cardiologist, a doctor who specializes in heart diseases of children, and have an echocardiogram (a special ultrasound examination of the heart) in the first two months of life so that heart defects can be treated (1,2).
- Intestinal defects. About 12 percent of babies with Down syndrome are born with intestinal malformations that require surgery (2).
- vision problems. More than 60 percent of children with Down syndrome have vision problems, including crossed eyes (esotropia), near- or far-sightedness and cataracts (2). Glasses, surgery or other treatments usually can improve vision. A child with Down syndrome should be examined by a pediatric ophthalmologist (eye doctor) within the first six months of life and have regular vision exams (2).
- Hearing loss. About 75 percent of children with Down syndrome have some hearing loss (2). Hearing loss may be due to fluid in the middle ear (which may be temporary), a nerve or both. Babies with Down syndrome should be screened for hearing loss at birth or by 3 months of age. They also should have regular hearing exams so any problems can be treated before they hinder development of language and other skills (2).
- Infections. Children with Down syndrome tend to have many colds and ear infections, as well as bronchitis and pneumonia. Children with Down syndrome should receive all the standard childhood immunizations, which help prevent some of these infections.
- Thyroid problems, leukemia and seizures (3)
- Memory loss. Individuals with Down syndrome are more likely than unaffected individuals to develop Alzheimer's disease (characterized by progressive memory loss, personality changes and other problems). Adults with Down syndrome tend to develop Alzheimer's disease at an earlier age than unaffected individuals. Studies suggest that about 25 percent of adults with Down syndrome over age 35 have symptoms of Alzheimer's disease (1).
Some individuals with Down syndrome may have a number of these problems, while others may have none. The severity of these conditions varies greatly.
What can a child with Down syndrome do?
Children with Down syndrome usually can do most things that any young child can do, such as walking, talking, dressing and being toilet-trained. However, they generally start learning these things later than other children.
The exact age that these developmental milestones will be achieved cannot be predicted. However, early intervention programs beginning in infancy can help these children achieve their developmental milestones sooner.
Can a child with Down syndrome go to school?
Yes. There are special programs beginning in the preschool years to help children with Down syndrome develop skills as fully as possible. Along with benefiting from early intervention and special education, many children are integrated into the regular classroom. Many affected children learn to read and write, and some graduate from high school and go on to post-secondary programs or college. Individuals with Down syndrome participate in diverse childhood activities both at school and in their neighborhoods.
While there are special work programs designed for adults with Down syndrome, many people with the disorder hold regular jobs. Today, an increasing number of adults with Down syndrome live semi-independently in community group homes where they take care of themselves, participate in household chores, develop friendships, partake in leisure activities and work in their communities.
- National Down Syndrome Society. Information Topics.
- American Academy of Pediatrics Committee on Genetics. Health Supervision for Children with Down Syndrome. Pediatrics, volume 107, number 2, February 2001, pages 442-449.
Thursday, August 28, 2008
Time is going by quick and it is hard to believe that John is 4 weeks old. He continues to do very well in all areas. He is still breastfeeding and eats like there is no tomorrow. His weight as of last Monday was 8lbs. 3oz. which is a weight gain of 9.5oz in 8 days. I think it is safe to say that he has this breastfeeding thing down.
We have started to prepare him for when Joy goes back to work by giving him a bottle periodically just to get him used to it. So far, he has done pretty well with this. He is not resistant to taking a bottle but it is difficult for him to get the nipple in the right spot in his mouth. But with a little patience and working with him, he is catching on.
He continues to have his tummy time either on the floor or on my chest. His endurance with this is increasing but he still complains and would rather be on his back. His head control is improving as he continues to lift it higher off the ground. He is also beginning to stabelize his head when we are holding him upright or sitting position.
He enjoys dancing to the music and us singing to him. It fun watching the way he tracks us with his eyes. It's as if he is trying to sing with us. He is beginning to smile at us and have facial expressions which can be comical at times.
So far, John has developed just the same as our other 4 children have and so we treat him no different. There may be a day when we hit an obstacle, which we will then meet that obstacle head on. But for now, we try to only focus on today, yet we continue to be mindful of the milestones and his progression.
Joy continues to gain strength. She has about 4 weeks until she returns to work. Right now, she is enjoying being home with John and taking him for stroller rides. It is difficult though when people confront her with the Ds issue. It is difficult to know what to say so we usually just change the subject and talk about things he is doing. We are determined that Ds is not going to be his identity - John is our son and a brother to his siblings. We continue to pray that the Lord will walk with him and protect him. We know that this diagnosis will not get in the way of what the Lord wants to accomplish in and through this little boy.