Tuesday, August 9, 2011

A Boy and His Dog

We don't have a dog of our own. But the dog belonging to the family who keeps John loves John and John is crazy about him. Here is a pic that Joy took yesterday of the two of them hanging out together.

Sunday, August 7, 2011

John Turns 3

How time flies. We as a family look back over the 3 years of caring for John and see how the Lord has used this little boy to mature us and to cause us to rethink the priorities of life, just as our other children have also come with lessons for Dad and Mom. But a child with special needs really throws everything off balance from the way the we think life should be.

These past 3 years has caused us to work a little harder and dig a little deeper. It has taught us that we sometimes grow very comfortable with life and relating to people "just like us", that it is difficult to see how the Lord wants to draw us out of our comfort zone to teach us more.

I am happy to report that John is doing above and beyond what we ever expected. Don't get me wrong, Joy and I have always expected a lot from our children and are proud of how each child has met those challenges. But given the professions that Joy and I have, we don't see the healthy Down syndrome children and when we found out that John would be born with Ds, our picture was skewed. This alone has taught us reliance upon God the Father who loves His children very much doesn't follow a script of how life should be and gives us strength and guidance to live the life He has chosen for us to live.

With that being said, John's accomplishments have overwhelmed us with the latest being his 3 year check-up visit last week. Despite not gaining weight much since his last visit 6 months ago, John received a clean bill of health. His head size, height is all on track. Joy and I had his neck x-rayed for atlantoaxial instability which is common in Ds children with the results being negative for any instability. It was determined that he is functioning at about 6 months delayed. His vocabulary grows weekly and is now putting about 4 words together.

As parents of a Ds child, we have learned to celebrate each and every accomplishment no matter how small. That each accomplishment, each day of life for us and for John is a gift from the One who loves us very much. I don't have an explanation for why God chose me to take care of John just like I can't explain why he chose me to be born in this country or allow me to be born to the parents I have. But I know that He loves us and gives us all what we need in order to grow closer to Him for that is His desire for each one of us.

Sunday, June 19, 2011

John: Learning and Growing

It has been a while since my last visit to the blogworld and much has happened. We continue to be blessed with a little Down syndrome boy who never got the memo that he was supposed to be delayed. We have also been blessed by hearing and reading about others with children with Down syndrome. There are a lot of people out there that really love their children and work to do what is best for them even though the best way isn't always clear.

John continues to grow and to learn new things. Besides being the youngest of 5 children, he attends daycare 2 to 3 days a week. He is the only child there with Down syndrome but that doesn't stop him from doing what the others are doing or having friends. The other children motivate him to do things that we hadn't tried at home. For example, we hadn't allowed him to fall asleep in his own bed but at daycare, he lays down with the others for nap and goes to sleep with them. Since going to daycare, he has gone to potty in the potty sporadically but with success. He loves to finger paint with his friends and to sit at the lunch table with the others and eat his packed lunch. John enjoys reading books and running. He has learned to run and is now running everywhere. He has been slow to learn to run with his head up but after a few run-ins with the cabinets, he is remembering to hold his head up. John feeds himself now and loves to feed Dad. There is nothing he doesn't eat. He has eaten boneless ribs, potato chips, pizza, BBQ pulled pork among other things that I wasn't sure he could chew.

As much as he eats, one would think that he would gain weight, but weight seems to go on slowly. His weight as of a week ago is 24 lbs. (he will be 3 in July). He is growing taller but hasn't changed much around the middle. He is still wearing clothes that he wore 6 months ago.

He now has a mouth full of teeth which have all come through. His last teeth came just about a month to two months ago and they didn't come through in the order or the shape they were expected. But we are encouraged that they all broke through in the correct place. Our dentist told us that if there is a baby tooth in that spot, there is usually a permanent tooth behind it. We will see what happens. With those new teeth in place, we are training him to keep them clean and for the most part, he does well with this task.

His vocabulary is increasing as he can now say "mom" to which my wife thought he would never say. So now he says it all the time. He goes to speech therapy 2 times a week for an hour. He was slow to warm up to the Therapist and work with her, but is now learning a lot of different sounds and words. He is even putting some words together. His vocabulary is probably around 40 to 50 words.

I write this not to brag on my son, however I am proud of his accomplishment, but to encourage new parents that these children have much more ability and potential than what your circumstances may appear. Don't give up, keep loving them for who they are and they will surprise you with how much in return they give to you. These children are an immeasurable blessing to all who take the time to get to know them.

Thursday, February 24, 2011

A Bad Combination

Children with Down syndrome have many similarities to children without Down syndrome. But as we all know, there are many differences. A lot of the differences are not critical and do not pose a problem, while there are some differences that become very problematic for our kids trying to fight off illnesses.

Earlier this week, we were reminded of the differences that work against fighting sicknesses when it was found that John had developed pneumonia. The differences that I am referring to are 1) low tone, 2) shallow breathing and 3) weak cough. These three worked against John this week as he was getting sick. He began with just a temperature but no real congested cough or snotty nose so we weren't they alarmed since we routinely give him breathing treatments anyway as a preventative. But with an elevated temperature, he wasn't drinking enough liquids and became a little dehydrated. The shallow breathing and decreased activity from being sick doesn't keep the lungs expanded as well as usual. The dehydration pushed him to where the mucus in his throat and lungs that usually get coughed up by you and I just settled in the lungs of a sick little boy with a weak cough. As a result, John was becoming infected by the secretions that he could not expel out of his lungs. By the time, we got him to the Dr's office, he was infected and has spread to his bloodstream.

John is now on the road to recovery without having to spend any time in the hospital but we are going to the ER everyday for a shot of antibiotic in addition to the antibiotic given orally here at home. The reason for both antibiotics is in part because of John's immune system is too weak to fight the strength of the infection and that the infection was in his bloodstream.

We have been reminded again this week of how quickly kids with Down syndrome can get really sick. Although, John is recovering now and has been eating and drinking well today, we are still keeping a close eye on him as well as giving him regular breathing treatments. This leads me to another thought - we are giving him breathing treatments because as we rehydrate him, the mucus in him lungs become loosened and need to be expelled. Since John has a weak cough, the breathing treatments help him to cough and bring up the mucus.

But most of all, we are thankful to the Lord for giving discernment in knowing when to take him to the clinic and to the Drs and nurses at Mercy Pediatric Clinic for giving him the care and attention needed. It really helps having a Physician that knows your child and is familiar with Down syndrome.

Sunday, February 20, 2011

A New Chapter - Daycare

Since both Joy and I work, John has always been babysat by a friend in her home. Recently though, our babysitter has started taking her son a couple of days a week to a church sponsored daycare here in town. Joy and I had expressed some interest in startin John in a daycare program but wasn't really sure if we wanted to send him to a special needs program or not.

We agreed to send him to the daycare where our babysitters' little boy goes, not really knowing how John would respond but with hopes that John would adjust well. And the adjustment has gone very well. The other children in the daycare have responded well to John and he has learned so much from them.

He lines up with the others and has learned to wash his hands under the sink and sits in his little chair at the lunch table very calmly and eats his packed lunch. To our surprise, he has even learned to go and get his pillow from the closet and take a nap with the others after lunch without being coaxed.

We are thankful that John has adjusted so well to his new surroundings, to the other children and they to him. I realize that each Ds child is different and face different needs but integrating our children with society often times challenges them to learn new skills.

Taking a step like this may be scary for parents of children with Ds as we weigh all of the pros and cons of whether or not to keep them with their counterparts. But we have had a great experience with this step. My advice is to know your daycare and staff. Know your childs schedule at the daycare and try to work with your child on the same skills as the daycare is asking of them.

Tuesday, February 1, 2011

John's Encouraging Progress

John is now unstoppable. He has found his legs and is constantly on the move. Just as with any 2 year old, he is into everything and thinks that he can and should be able to do everything his siblings do.

His newest skill is running. He loves to run, especially when he has something that he knows he shouldn't. He has great hip rotation which is a problem with children with Down syndrome. If you remember, the way that we confronted this issue is stair climbiing (let me know if you would like to know more about that part of therapy).

We are working on mouth and tongue movements, especially sucking through a straw. A couple of the ways we are approaching this is to use a sippie cup with a valve, and to use a short straw. He seems to do better with a short straw as he doesn't have to suck as powerfully. And as he improves, the length of the straw gets longer, therefore and hopefully increasing his suction power.

His eating has greatly improved. However, he doesn't like anything chocolate which is strange for a little boy but then again, we are all different. Among his favorite foods are vanilla ice creem, french fries, yogurt (I still feed him Brown Cow which is high in fat), chicken, green beans, and green peas.

He still drinks from a bottle when he is tired, otherwise he used a sippie cup with a valve. The valve encourages him to suck and it also prevents messes. He is drinking whole milk instead of formula consistently now and has been for the last 4 -5 months.

I don't get on hear as often as I would like but still like to update you all with what is going on with John and how we are dealing with his syndrome. May this be an encouragement to all new parents of children with Ds that these children are wonderfully gifted children and can learn to function in the world. My family would be lost without John as he has been a blessing and complete joy to have.

Often times the medical community paints a dismal picture of children with Ds which cannot be taken generally as each child is different. As a Christian and a believer that we are all fearfully and wonderfully made with a purpose, we believe that each child should be given a chance to thrive and succeed in life. And that is what we are doing here - giving John the best opportunity to thrive that we can give, most of which is our TIME. May God be with each of you as you raise and make decisions on how to best interact with your child.