Saturday, August 30, 2008

Myths,Truths and Facts About Down Syndrome

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.


References


  1. National Down Syndrome Society. Information Topics.

  2. 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

4 week update

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.

Friday, August 22, 2008

Labeling

Recently, Joy and I have been discussing the issue of labeling and the disadvantages that it gives to children. I was starting to say children with disabilities, but to say that would not be accurate because any child can be labeled. Whether it be blondes, people with big noses, people who wear glasses, people of color, people who have a physical or mental disability, etc., labeling has the same effect at every level although we mostly think that only the physically and mentally disabled person are affected.

By labeling, we are limiting the ability of a person. Also, we as authorities over the person (teachers, parents, grandparents, etc.) are subconsciously lowering our expectations of that person, therefore they lower their expectations of themselves and they may never realize their full potential in life.

As I have seen many times in my career as a Therapist and as I have seen this week on the Olympics, the human spirit is an incredible thing that has the ability to take people beyond the limits set for them. One ingredient that we can provide to help them is the love and belief that they are able to do anything they set their mind to.

To end this post, I would like to say thank you to Mrs. Musgrove who attends church with my Mom. Even though I do not know her personally, she took the time to sew John a stuffed teddy bear with his name and birth date written on the feet. It is friends like this who help keep us going on this journey. Sometimes, I think one of the purposes of God blessing us with a Ds child is He wanted to see how much love we had to give.

Wednesday, August 20, 2008

Must Be the Addtional Chromosome

video

Now I know that it is not polite to brag on your own child but I wanted to share with you this accomplishment. Mainly because I am proud of him but also that I didn't really believe it myself. All of our kids have always had good strength from the very beginning. But when John was diagnosed with Ds, I didn't really expect very much from him although I kept working with him like he would accomplish all that my other kids have. I'm not saying that this is a result of the Physical Therapy but I know that it has helped him to be challenged.

We continue to make sure that he gets plenty of floor time on his belly and also a lot of holding/snuggling time. Early on (about the first week), we began by brushing him, rubbing him with different textures and dancing to music. John has responding to this combination of stimulants very well. He stays awake more, he is much more alert and tracks our movements with his eyes.

We thank God for this gift. He has answered our prayers beyond what we expected. It is difficult to say what lies ahead but we are grateful for today. Joy and I heard a good sermon the other day from Adrian Rogers entitled How to Find Peace in the Midst of Your Storm. This message ministered to Joy and I so I wanted to add it here. Just click here and you can listen for free.

Monday, August 18, 2008

The Question of Early Detection

In recent conversations, the subject of early detection of Ds or other chromosomal defects have come up and I wanted to discuss here our thoughts. As you know, Joy and I chose to have an amniocentesis in the first trimester following a blood test that revealed that there might be a problem with John. Since delivery, we have revisited this issue many times, mainly for the sake of communicating our experience to others.

As for the amniocentesis, I realize that there are a lot of couples that don't want to take that risk. After researching the prcedure and from our experience, we felt like much of the risk was determined by the clinician and his/her skill level which some are more experienced and skilled than others. It was important to us to seek out a clinician with a lot of experience and a low rate of miscarriage.

Time is important here as the thinking is that the fusion of the amnion membrane lowers the risk. We first went to get the amniocentesis performed at 13 weeks but after seeing on the ultrasound that the membrane was not fused, we asked the Doctor to wait. I say that we asked him to wait because he told us that he could find a place that was fused and go ahead. We decided to put it off until week 15. When we returned to his office at week 15, it had fused together so that we, along with the Dr. felt that it would be o.k. to proceed.

At the time, it was emotionally tough and proved to be a long pregnancy because there was a lot of emotions that surfaced and had to be dealt with. But in looking back, we are glad that we learned early in the pregnancy as compared to finding out at birth. Finding out early gave us an opportunity to adapt emotionally. After having John here, it would have been very difficult personally and on our marriage to have to adapt to this life AND caring for a new baby and 4 other kids.

One of the reasons that I share this with you is to encourage you to take more control of your healthcare in terms of asking questions. Sometimes healthcare providers assume more of a role as the sole decision-maker instead of a facilitator of healthcare. I am of the mindset that the more information an individual has, the more apt one is to make a good decision. So the next time you have to deal with a healthcare provider about an issue, you shouldn't be intimidated into not asking questions.

John Continues to Thrive

First, I would like to say thanks for reading this blog. It not only helps me to write down my thoughts as I continue to work through this mentally, but it also helps to know that you are out there. To date, there have been people from 28 states and 8 countries to see this blog. I hope this blog is a source of strength for people. Being able to write my thoughts have helped me to mentally work through some issues. I have been researching the Internet for not really more information on DS, but for other families in this situation who are willing to share their experiences. Over the weekend, I found a forum such as that - real life families struggling with the same issues as me. So I would like to say to all the nice people that I have had the chance to talk with from www.downsyn.com what an encouragement you have already been. I hope that this blog is encouraging and a resource of strength for you.

Yesterday, John weighed 7lbs 9.5oz which means that he has gained 5oz in 6 days. He eats like there is no tomorrow. Joy comments that she feels like a milk factory because that is about all she gets done but she is committed to this process as it is working well for right now. He pretty much wakes himself every 2 1/2 - 4 hours to eat and some nights he will go as long as 5 hours. He continues to interact with the other kids more which they like that. They enjoy playing with him in his jungle gym.

He continues to have Daddy playtime. He likes laying on his belly on my chest which I am sure it is nice and cozy for him as I snuggle with him. He is holding his head up a little more each day but not consistently which will come in time. We are trying not to push him but to keep him challenged. As we learn from the experience of others more about John's personality, we are able to relax a little more with him. However, it is still important to keep that carrot dangling in front of them.

Yesterday was the first Sunday that we took John to church. It was good to be able to share with our church family the little boy whom they had been praying. They all enjoyed seeing him and holding him as he captured the hearts and attention of a lot of people. We eat supper at our church every Sunday evening so it was a great chance for us to sit around and share what the Lord has been doing in our life. It would be very easy for us to sit around feeling sorry for ourselves and our situation but the Lord continues to give us strength to face our struggles and to turn those struggles into victories. Also, as I have learned in the past and am reminded of again that the situation is never as bad as it appears. Sure there are things that we wish that we could change for John but there are a lot of things about John for which we are thankful. There is a lot of energy lost is self-pity - energy that could be used for good in my life or someone else's.

Today is the last day of summer vacation for my other 4 children as they will head back to the classroom tomorrow. I think they are looking forward to it although it will be a change for John which he may be looking forward to a little peace. Joy and I will miss their help though. They all love to help out and can't wait to have their turn holding him or sitting by him in the van. We have been blessed with older children who love him and are motivated to help him. We told our kids early on about the diagnosis of DS and what it might mean for John. They have taken that as a challenge and have not looked at him any differently which is what we all wish for - to be seen for who we are and not for what we are lacking.

Friday, August 15, 2008

From the Eyes of a Sister


I didn't think that a baby would be so fun. John is really funny sometimes.He really likes his jungle gym. He likes the mirror on it too. He's really fun to play with and I like to hold him. When he is in the jungle gym, he likes to kick the rattle and look at himself in the mirror. He likes to sleep in his pillow. His hair is really soft and fuzzy.

Yesterday, we put him in the stroller and went for a walk down the street. I pushed him half-way and Jeremy pushed him the rest of the way. He was asleep in his stroller at the beginning of the walk and then he woke up. He likes being outside and I like taking him for walks.

I love him a lot and like to hold him. Its fun when he makes faces in his sleep. He's like our alarm clock on school days because he wakes up and cries. That's why I hope he stays with us for the rest of his life.

Thursday, August 14, 2008

Update on John

John is now 16 days old. Time seems to move much faster now that my other kids are home. John has now settled into more of a pattern of nursing every 3 hours during the day and once before bedtime (which is about 1:00 a.m.)and then again at 5:30 or 6:00. He is getting to where he will wake up on his own when he gets hungry. He has done really good and so we feel like we can stop worrying about him getting enough food.

He continues to be more active and alert more often which my other kids make sure of that. He continues to enjoy his daily playtime in his little jungle gym. His favorite things to do is to lay on his back and kick the rattle while looking at himself in the little mirror that hangs from the top.

I still try to have my time with him to work with his neck extension exercises while on his belly. I mentioned the last time that I was going to use the ball but I find that I have better results with him on my chest. This not only gives him a warm body to relax on but he is motivated to hold his head up to look at me and find my voice.

I also know that since he does have this diagnosis of DS, both Joy and I are a little more watchful of potential problems. And I must admit, sometimes we are unrealistic as to what is a problem and what is not. Sometimes you just want to relax and let them develop naturally but it has been our experience that intervention should not be delayed. We just try not to overreact with our identifying of delays.

I have current pictures that I will post tomorrow. Tonight was my last class meeting for my 4th class so this week has been difficult for me to fit in the blog.

Tuesday, August 12, 2008

Sibling Response

Today was the first full day that our other 4 children have been home with John and I might add, they have done a good job in helping and wanting to be involved in his care. They have all enjoyed taking their turn holding him. George who is our 10 yr. old has helped with changing diapers. They have also helped keep him awake more today which we are hoping that this will make him sleep more tonight but I'm sure that is wishful thinking.

He continues to do well with breastfeeding. Today he has averaged about every 2 1/2 -3 hours. We are pleased with this and Joy continues to remain focused on breastfeeding as long as she is able. Understanding that children with Down's syndrome are more susceptible to infections, the protection of Joy's anti-bodies will go a long way to help John. And Joy has been exposed to many infections throughout her career as a Pediatrician.

Our Physical Therapy sessions continued today as I began working with him on the ball. Usually, I will work with him on the floor but today I wanted to begin the ball as it is better contoured to his body and is better conducive for neck extension. I notice that he is not as motivated to get his head up as my other kids but he tries hard. I would rather have his attempts at this than to have him be content to just lay there. One thing that I have noticed with him (and I know that I will have to provide video to substantiate this with some of you) but when I put him on his belly on the floor, he is learning to roll over on his back. Doing it one time, I would have called it a fluke, but this is the third time that he has done this. So we just keep working with him where he is and give him what he needs.

Monday, August 11, 2008

A Return to "Normal"


Today was the day that our other 4 children returned home after being gone for about 10 days. It was a sweet homecoming - we missed them very much and were ready for them to be home with us and enjoy their brother. John, on the other hand is still trying to figure out what has happened to his quiet world. He has tried to sleep but has an audience for whatever he does whether it be eating, sleeping or pooping. Seriously though, we are very pleased that John has brothers and a sister that think he is wonderful. This is what he will need to keep him motivated.

This is also the day that we took him to the clinic for a weight check. At his last visit for a weight check, he weighed 7lbs. 1.5oz which caused concern because he was at that weight for a couple of days. But over the weekend, he has seemed to get understand his goal of eating all he can. Today he weighed 7lbs 4.5oz; a full oz since Saturday without the use of supplements. This is an answer to prayer for we understand what a gift it has been for John to be able to nurse.

Thanks to my sister for taking her day to drive up here to deliver my kids. We are glad that you got to come and see John. Also, it was very thoughtful of her Mother-in-law to make and freeze some food for us. Also, thanks to the ladies at our church as they continue to provide meals for us. We really have been blessed with so many friends that love and support us. It would be difficult for us to go forward with the motivation that we have without you all.

I have uploaded new albums to Picasa of today's events. Just click on the picture above.

Pressing Onward

Here I am again, up at 1:00 am with John. He has decided that he wants to eat again. He has played and ate real well today (about every 2-3 hours. I think he must have heard me put out that challenge when I was talking with the Dr. last Thursday when I said that I'd like to see him at 7lbs 5oz by Monday. The Dr. told me that that might be a little unrealistic for him - we'll see tomorrow.

Tomorrow is also the day that our house and John's world will change. Our other 4 children will be coming home from cousins and Grandparents house where they have been for the last 10 days. We are ready for them to get home, but poor John who has lived the life of an only child for those days will be showered with continuous love and attention. They will provide lots of stimulation for him and enjoy spoiling him. I am so glad that our other children love him so much

They know about his Down syndrome diagnosis and some of the issues that are associated with the syndrome but they also know that God is in control of our life and He will protect little John just as He has for the past 9 months. Our kids have been faithful in praying for John - that he would be as healthy as possible which we feel like we have.

Thanks again to my sister and Dad and Mom for keeping my kids for these days. We have learned to care for John and it has also given Joy time to heal. We love you all.

Saturday, August 9, 2008

Surpassing the goal

Okay, so maybe we overreacted a little when we were told he needed to be at 7lbs 3oz by Monday. We took him by clinic this afternoon to weigh him and his weight was 7lbs 3.5 oz. We were both very pleased with his progress. Maybe now we can stop worrying and let the boy sleep. His progress was also gave Joy confidence that she wasn't failing in her breast-feeding efforts and gave her the encouragement to go forward which is our goal- to go forward with breast-feeding.

Even though we are pleased with his progress, Joy and I both know of some of the potential issues that children with Down syndrome face and it is our goal to give our little John the healthiest start to life that we are able to give so that he may be able to ward off anything that is lurking. We know that with the Lord's protection and guidance, your support and our love and work, we know that he will get that. Your support does mean a lot to us as we have heard from a lot of you via email, cards, phone calls and even bringing in meals for us. Thank you.

Friday, August 8, 2008

New Pictures Posted

Hello everyone. As we continue to help John pack in the calories, i report that he had a good day today and fed often. Today, Joy's sister and brother-in-law brought her mom up to see us and to spend time with the baby. We enjoyed seeing them. Unfortunately, John slept most of the time they were here so they didn't get to see him in action. But that didn't last long, here it is 11:30 and he is wide awake and doing his baby stretches on the floor.

I have posted some new pictures in a new album entitled August 8, 2008. I hope that everyone has a good weekend. We will keep you updated on the weight as we plan to weigh him tomorrow.

Up for the Challenge

When we had first learned that this baby may have Downs syndrome, we knew that we would face new challenges like we hadn't before but there is really nothing that can prepare a parent for the new demands placed on them in having a baby with Downs syndrome. When our other children were this age, it was very physically demanding but with John, it is physically and emotionally demanding.

Everyone understands the physical demands of having a new baby but it can be emotionally demanding also because you have to think for them also. In comparison with my other children, when they got hungry or were poopy, I could rely on them to wake up and scream at me. With John, I can't always be assured that he will do that so Joy and I need to monitor when it is time for him to eat. And that is partly why we are in the situation that we are in now - because it has taken us awhile to learn that.

When he came, we knew that breast feeding would be difficult for him which is why we chose to delay his circumcision until after we had established some type of pattern. We didn't want to throw too much at him at once. As I reported at the last posting, we went for the circumcision yesterday and we are still glad that we made the decision to delay it. We had so much trouble putting weight on him the first week and such a difficult time yesterday after his circumcision with him not being interested in feeding that the two together wouldn't have been a good combination for him and might have delayed him from coming home when Joy did.

We got home from the circumcision around 2:30 yesterday afternoon and he slept all of the afternoon. I had class last evening from 6:00 until 10:00 so I wasn't here to help Joy. But before I left for class, we had discussed the challenge that we faced and our plan of attack so she was ready - she was exhausted but she was committed to the plan.

Joy was diligent to nurse him and give him supplement last evening while I was in class every 2 hours. She also kept him awake in between feeding times by providing the stimulation of music, lights, and toys. We received one of those small overhead jungle gyms by Fisher Priceas a shower gift and it has been very useful. The constant stimulation of lights, music, bright colors and the different textures on the mat provide for him good motivation to move his head to turn and look at things and to reach with his arms.

I also plan to go today and purchase a baby scale or a food scale will work so that we can monitor his weight on a daily basis. By doing this, we will know whether or not the current plan is working or if we need to go to plan B. If you find yourself in this situation, it will be important to keep your eye on the goals which are to get calories down him and to preferably do it in a way that works his facial muscles the most.

In talking with others, we are also reminded that there is always someone that has it worse than we do. We need to thank the Lord for what we have instead of grumbling for what we do not have. John will make it through this hurdle and come out a stronger baby. Joy and I may be a little bit weary but we are learning patience and love like we never knew with our others.

Thank you all for praying for us. Your continued support mean a great deal to us as we learn how to best meet his needs. It would be difficult to go through this without you there for us.

Thursday, August 7, 2008

Brief Update and Prayer Request

We just returned from the clinic for another visit to see his Pediatrician. He is not gaining weight as fast as we had hoped and we had him circumcised today. His circumcision went great with no problem for him - he slept through it all. The real problem is that his weight was 7lbs 1.5 oz which on Monday he weighed 7lbs 1oz. Our goal is about .5 oz/day. I would like to see him gain 1 oz/day but you know me. Physical Therapist always seem to want more. His next clinic visit will be Monday for a weight check.

Like I said before, he is nursing well and he is making plenty of wet diapers so he getting plenty of liquids but he is just not nursing long enough to get the hind milk of the breast milk which is where most of the calories are.

Just pray that we will find a way to get calories into him. We have several options that we are going to try. Thanks again for your prayers.

Wednesday, August 6, 2008

Hello Friends

Hello friends. I report to you that John had another good day today after waking up every 3 - 4 hours last night to nurse which is very good for a 1 week old baby. For this we are thankful. He slept a lot this morning but this afternoon and evening has been very active. He has enjoyed his floor time and the massages and holding.

He is steadily gaining strength and control as he works to lift his head off the floor. His grasp is also getting stronger as he is better able to wrap his little fingers around ours. Each day, we try and allow him floor time on his stomach and his back. He really benefits from this time. One thing that we noticed today is that he is beginning to coordinate turning over onto his belly from laying on his side. We are so proud of him - he works hard. About a half hour to an hour at a time is about all that he is good for. We try to do this 3 - 4 times a day.

Today we went to the clinic for a lunch meeting. The front office staff and nurses just couldn't get enough holding time. While we were there, we weighed him and he had gained an ounce since Monday.

We continue to be thankful for the things that we have and what he is able to do but there are also days that are difficult for us as we think about the child that we don't have. Today was one of those days for my wife - it seems that the more time we spend with him individually, not only do we see his strengths but we also see his weaknesses.

Please pray for us as we continue in this journey. It is not easy at times both physically and emotionally.

Tuesday, August 5, 2008

The Sun Rose Again This Morning

Well, it is a new day and John is having a better day. Really, I think it is that Dad and Mom are learning more about him and his needs. If you remember, yesterday was a rough day for us as he was a little more lethargic and slept most of the day after sleeping for 6 hours straight the night before.

Last night was a return to his normal waking up to feed every 3 to 4 hours. He woke up this morning really active and wanting to play. We spent some time on the floor just looking around listening to music. One thing that is different is his need for body stimulation using a variety of textures. This brings him alive and energizes him. It seems as if he has an on/off button that we need to push to get him going. I will post some pictures of our morning playtime that hopefully give you more of an idea of what I mean. One thing that was encouraging is his private time on his Boppy pillow. I put him down on the pillow with the music going and then left the room to go wash some dishes. When I heard him crying and came back in to check on him, he had squirmed off the pillow and onto the floor. So right now, movement doesn't appear to be as much of a problem as does providing him with the proper motivation to get him going.

As far as breastfeeding goes, Joy is still having to work with him on it. Sometimes he feeds great and other times he has trouble. We are still providing him with tongue exercises prior to putting him to the breast which seems to help him. Also, he will perform better on one side than he will the other which may just be a problem with positioning. But when he latches on, he will usually nurse until the breast is empty.

Tools of the trade - I thought I would share some of the tools that have been a help to us. The Hazelbaker FingerFeeder by Medela was used early in the breast feeding process when he was having more difficulty getting latched on. Now that he has learned how to latch on and suck, we don't use it as much. The goal here is to let him use those facial muscles as much as he can. Another tool that we use is different brushing him with different textures whether it be our warm hands, a plastic ball or the bristles of a soft paint brush. The tongue exercises helped him to learn how to curl his tongue around the nipple and to elongate it so that he is better able to nurse. The need for performing these exercises has decreased over time but is still used.

Lessons Learned

Today was a difficult day for all of us, yet a learning experience for Joy and I. John was very lethargic today and slept most of the day (even after sleeping 6 hrs straight last night). It was just very difficult for us to wake him, even to eat. This really concerned us. Even if we got him awake, he would just stare into space and not focus on us. But once we stripped him down to the diaper and gave his skin stimulation with either our hands or toys, he came alive. He would wiggle and try and lift his head off the floor.

This alleviated our fears that something bad was going on with him. But it also showed us the importance of stimulation. Unlike a child without DS who is able to self regulate his awake and sleep time, he doesn't seem to be able to do that. He would rather sleep and do nothing as to eat or have play time. Joy and I are beginning to see that we are going to have to regulate for him.

I guess one thing that has made today tough for us is that we are probably still having unrealistic thoughts about how much he is affected. Well, today we got more of a glimpse into his DS than we had seen before. It makes my heart ache for him. I just pray the Lord to protect him and to give Joy and I peace and an understanding of how to best meet his needs.

Monday, August 4, 2008

First Doctor Visit and a Little History

Things continue to go well with John. He slept for 6 hours straight last night which was great for Joy to get the rest that she needed. Although, Joy woke up a couple of times in the night to check on him as that is unusual to say the least. Now if it happens again tonight, I might have reason to believe that he is getting on schedule.

This morning was our follow-up appointment with the Pediatrician that saw him in the hospital. He measured 19 1/2 inches long and 7.1 pounds which is back up to birth weight. It is not uncommon for babies to measure the same or shorter at the first check-up. This is due to the increase in muscle tone after delivery. His heart sounds revealed normal new-born findings for which we are thankful. His skin, color and muscle tone was just as expected in a new-born. We feel blessed.

I would like to rewind a little and share a little history with you the circumstances that led us here. During our first month of pregnancy, Joy had some blood work done that revealed there might be a problem with the baby. This information along with abnormal findings on the initial ultrasound led to us deciding to have an amniocentesis performed. Those 2 weeks waiting for the results were very long for us as we cried and prayed and discussed the what ifs. Abortion was never an option for us but we still wanted to know. One evening while sitting at home, our OB/GYN called us and gave us the news that the amnio was positive for Down's and that he wanted us to have follow-up ultrasounds just to keep track of the growth.

At that time, our mission was defined by the desire to want to know what was going on inside of Joy and what we could expect. However, with every ultrasound that was done, the results came back inconclusive - the abnormal measurements that we had gotten on the initial ultrasound were now in the normal range (they were high but still within normal limits). We had initially had concern about some things that we saw in the gut which were now not an issue either. It was as if the Lord were telling us that we were not in control; we just needed to trust in Him. This was difficult for two people that make it their life by asking questions, but in the back of our minds, we knew the promises of the Lord to never leave us and that He will protect us like He had always done.

From the amnio to the birth, it was our prayer that the Lord protect John and mom and show mercy and grace upon us all. And that He would give Joy and I peace for the present and the ability and love to care for whatever comes. We got our kids involved and told them of what may lie ahead. They were diligent in their prayers that the Lord protect the baby. (nothing will soften the heart quite like the prayer of a child). Our church family heard of our story as well as family. We had a large group of people lifting us up in prayer asking for God's protection.

As you can see, John is a happy and thriving little baby boy. Yes, he has some physical characteristics that are unique to kids with DS, but we feel very blessed by his abilities at this point in his life. We don't know what the future holds for him, whether he will develop normally or not but we are focusing on what he can do today and trying to build upon the good things.

We don't pretend to have the answers as to why God does what He does. That is like asking why you were born in the family you were or why you were born in America while others were born impoverished and the ultimate question of why did He send His Son to die for us - simply because He Loves Us (John 3:16-17).

Sunday, August 3, 2008

Instruments of His Love

John continues to do well and interacts with us more each day. Two of Joy's sisters came along with her Mom and niece to see him yesterday and really enjoyed him. He is really enjoying all of the holding time that he is getting but he also enjoys his wiggle time. He really stretches out and gets to moving...must be the music.

With the house being relatively quiet as our other kids are still away, Joy and I have a lot of time to talk and discuss the issues that we face and some of the issues that John will face.

When we had the idea of creating this blog, it wasn't our purpose to label John as a DS child but to tear down preconceived ideas that we oftentimes have when someone speaks of Down's Syndrome. We realize that people are unfairly labeled, as it is a part of the world in which we live. It is our prayer and was our discussion this morning that the Lord would give us as parents strength to see beyond the label. One of the things that I have learned in my experiences of working with people is that labels cannot be trusted. The human spirit is awesome and drives individuals to outperform the label if allowed the opportunities and given the proper motivation.

As John continues to thrive, we are thankful. We realize that there may be difficulties that lie ahead, but we are asking the Lord to make us grateful for what we have today and to let Him worry about tomorrow. One song that has ministered to us is a song by the Newsboys entitiled Lord (I Don't Know). Here are some of the lyrics:


Lord, I don't know where all this is going
Or how it all works out
Lead me to peace that is past understanding
A peace beyond all doubt

You are the God of tomorrow
Turning the darkness to dawn
Lifting the hopeless with hope to go on
You are the rock of all salvation

Joy and I are also very grateful for the support that we have received from family and friends. Our church has been a good source of strength for us through this time of uncertainty. The ladies of our church have brought meals and family has visited with words of encouragement, gifts and labors of love. We welcome any of you to come visit. This experience has shown us how much we need each other.

We know that the Lord has great things planned for this family and for John if we will just let Him guide and lead us.

Saturday, August 2, 2008

Physical Therapy (better known as Daddy play-time) and update

We continue to be see evidences of God's protective hand upon John for these past nine months. His Grace and Mercies are definitely new each day.

Last night was a much better night for us. John slept for a 4 hour stretch before he woke up to nurse and then went back to sleep another 3 hours. This was good for Mom since she is still in the recovery stage. Dad hasn't gotten to the place yet of light sleeping. I used to wake up with my others but I guess it has been so long since I have had to wake up in the middle of the night. I am sure that I will soon learn.

Last evening was the first time that I have had the opportunity to get down on the floor with him and spend some one-on-one time with John. I love to get them on their belly early on as I have done with all of my children when they were this age. Wiggle time is and will be crucial to him as this is the time to stretch and learn to maneuver his head against gravity. This is also great bonding time for John and myself as most of this play time occurs on my chest. This only last for about 30 minutes before they wear out but it is a great time.

Fortunately for John, he has been blessed with good tone and movement. At this point, he has full range of motion and is able to move all of himself well with the exception of his head which is normal for this age. Although, as you can see in the pictures, he is hard at work on lifting his head off of my chest and turning it to either side. Lots of outside stimulation such as craddling, moving him in space, brushing his face with my hand and with his are all used to motivate him to move. I also like to use the stimulation of music while we "play". This really helps get his senses to working. He is learning to like the Newsboys as we move and dance to the beat.

Another issue that we continue to work on is breastfeeding. He continues to do well with this and has great coordination of suck/swallow/breathe but he sometimes gets very anxious for his meal that he forgets what to do with his tongue. We just work with him through this by giving him a few tongue exercises to remind him of what he is supposed to be doing. But overall, exercise time prior to breastfeeding has decreased and his time at the breast has increased. He appears to be gaining weight and being more satisfied.

His hearing is intact as far as we can tell at this point. When I call his name from across the room, he turns and looks my direction. His eyes open wide as he continues to try to focus them.

Our friends at the church that we attend have started bringing meals by which has been a big help to us as Joy is unable to move around much. Even if she felt good, she has been occupied with John. I am busy with my school as I continue toward finishing a degreee in Business Management.

Thanks to all of you who have stood with us for the past nine months and continue to do so. Your support whether it be prayer, cards, emails, etc. has been uplifting and encouraging for us both as we journey down this unpredictable road. Without the support and love from you, it would be difficult for us to continue. It has helped to keep us focused on the things that we have and not the things that are absent.

Friday, August 1, 2008

Reality Quickly Sets In

Let me set the stage for you. I am a 46 y/o veteran prize fighter who has not been in the ring for some time. After a 6 year hiatus, I willingly but not totally aware of the surrounding issues sign up for another fight. I go into this fight with great confidence that my experience will sustain me and give me victory. Well, here I am this morning as I stumble out of bed after 3 hours sleep to change a poopy diaper, feeling like I have just gone through round one and my opponent, my newborn son, has just KO'd me and brought me back to reality. If I thought I had forgotten what it was like to have a newborn in the house, I have been quickly reminded.

But in all seriousness, this baby is giving us more encouragement with each day. He has discovered that nursing once milk begins coming down the supply channels is very satisfying. Through the night, he fed every hour and a half for about 15 minutes. I guess he is making up for lost time. That is a praise for us as got off to a slow start at the beginning. We are quickly learning that with a DS baby as well as any baby, you take it one day at a time.

Joy and I both battle the fact that we know a little bit more than what is healthy for us about this Syndrome and the upcoming challenges that we think we are going to face. But just as we learned through all of the prenatal test that were done, God is right there to tell us to just take it one day at a time and to let Him worry about what lies ahead. Our job right now is to just love and care for him the best that we know how. As with each child, each DS child is different and varies in their abilities. Just because you know one that struggles with certain issues doesn't mean that they all struggle with those issues.

As far as other issues that we were concerned about, his hearing screen was repeated before we left the nursery which he passed in both ears. This test does not measure his ability to hear per say but measures the brain waves in his brain when his ear drum is stimulated.

We still have to put in a little time to prepare him for breastfeeding. But even this preparation time has decreased. By preparation, I am referring to some tongue exercises that Joy and I have been doing with him in order to train him to maneuver his tongue correctly. I won't expound on that here but if you would like more information about that, you can contact me.

His movements, alertness and reactivity continues to improve as the days go by. As we were up this morning dancing in the living room to music, he was bright eyed and smiled at me as if to say that he was enjoying himself. He now sits in the swing very content to be moving.

As you can tell, Dad is getting in some serious bonding time as I fall in love with him more each day. He is a special little boy and I know that the Lord has a special plan for his life just as he does for my other children. We continue to thank the Lord for His protection over this little boy for the past nine months and know that His hand will continue to surround him with His love and protection. And for right now, Joy and I have been blessed to help supply that love and protection.