Birthday Pics of John and an Update

John had a great day on his birthday and we took lots of pictures. I thought that I would share them here.

Also, I wanted to give an update on what we were doing. I have recently gone back to work and am still going to school, so the blog has fallen on the priority list. But I still get on here from time to time to catch up with what is going on with your children as I have missed chatting with you and hearing about how you are dealing with life in the Ds world.

John is continuing to learn new things. We are introducing him to new table foods that he is able to chew without having a mouth full of teeth. Speaking of teeth, he now has two bottom teeth which my wife says are very sharp - I will take her word for it. But after a long fussy month of him working on them, we are all glad that they are in.

Weight wise, John could be doing better as he only weighs 16 lbs. 6 oz. We would like for him to eat more but it is sometimes a struggle to get him to eat. And being without teeth, there is not much that he can eat right now. We are going for the high calorie foods and supplementing breast milk with high calorie formula. We are also offering him foods very often. I think one of the reasons is that Dad has gone back to work and on the days my wife and I are not with him, we are not sure how much he eats. As I have always said about children with Ds, they are easy to ignore for various reasons but mainly they do not usually throw a fit or cause a stink like a typical child would if he/she didn't get a meal on time. So we have resorted to different methods in which to feed him but that is for another entry.

John is a very playful and outgoing boy so he loves to be on the floor and play with his light up toys and bounce in his bouncer (I realize that these aren't popular among some Therapist, but this Therapist thinks they are great if they aren't used too much - more on that later).

He is climbing up on the steps so we are working with him on proper technique of pulling up. As you know, Ds children do not move the same as a non-Ds child so we are working to teach him the correct patterns.

John is taking steps with hand-held assist. We have been working on this for a couple of months but have just seen him initiate the steps himself. We are very excited about this.

That is a brief update on John. He continues to warm our hearts with his smile and amaze us with his motivation to learn new things. Thanks for reading my blog. And now you can read my blog at www.wellsphere.com.

Celebrating the Life of One Who Has Changed Our Life

John Austin Hill turned 1 year old on Wednesday, July 29, 2009. The day went the same for him as the previous 364 days of his life as he had no idea of the significance of the day. But it was very different for my family and I as we marked the day with special surprises, thoughts, and time for John as we showered him with the love and appreciation for his life and membership into our family. As we celebrated with immediate and extended family, it caused me to reflect upon the past year with him.

It would not be accurate for me to tell you that our life hasn't changed because it has. The question is has it been for the worse or for the better. The answer will differ depending upon ones frame of reference. If that question were asked of a person or couple who has the goal of independence of children and a freedom to someday enjoy life without the responsibility of a child to care for, the answer may be negative. Or if a family prided themselves on keeping a neat attractive appearance in the community, the answer may also be negative. I will admit that I sometimes fall victim to this line of thinking. But I then have to reign in my thoughts and reassess the real value of life: is it to keep up appearances and a lifestyle of doing for me or is it about relationships and passing on a legacy in the children we raise. For my wife and I, we made the decision early in our marriage that relationships were much more important than any amount of money we would make or possessions that we would acquire.

This is not to say that we do not struggle with the negative thoughts. Any human would but this is one of those situations in life where ones attitudes, faith, and beliefs are tested. It is true that our life has changed this past year as life has slowed down and we have stayed close to home. John has required a bit more attention than our other children had at this age, and by choice, my wife and I chose that I would be a stay at home Dad during this initial phase of his life in order for me to help him with some skills that will be foundational in his life of learning.

With all of that said, John has greatly blessed our lives in more ways that we could have ever imagined. The extra time spent feeding him, caring for him when he has been sick, working with him to help him master new skills, etc. has all been life changing for the Hill Family. We are proud of all of our children, but John has breathed a new life into this family like none other.

We give thanks to the Lord for choosing us to care for this child and for the lessons John has taught us this past year. We are also thankful for a healthy Down syndrome child. John - may your light shine as bright as your sister and brothers.

Dad

Differences and Similarities

Since John has Down syndrome and we have four other children who do not, I thought it would be helpful to share some of the differences and similarities of John with my other children. As a side note, some of these differences may or may not be entirely related to him having Ds. First the differences.

Differences:

1. John does not have teeth at this point, so he is limited on what he can eat, whereas our other children had a few teeth if not more at this point.


2. John is currently learning to crawl with his belly off the floor, whereas our other children were cruising the furniture at this point.


3. John takes longer to eat than our others did. Three reasons why: John gets distracted easily as he would rather socialize than to eat; tongue thrusts; and when he gets excited he begins to flail his head and arms around.


4. John is not gaining weight as fast as the others did at this age.


5. He seems to be prone to illness (croup for one).


6. The few times he has gotten the croup, it has been more difficult for him to get over it.


7. John requires the bulb syringe to clean out his nose almost on a daily basis, whereas our other children could clear the mucus at the back of their throat by themselves.


8. Despite children with Ds having small ear canals and being known for ear infections/tubes, John has only had one ear infection in his life.

Similarities:

1. We are just as crazy in love with him as we were with the others.


2. John is just as interactive as the others were at this age.


3. John is a very happy baby.


4. John has just as bad of a temper as the others did.


5. John loves books and to be read to just like my other children did at this age.


6. John is just as curious about things.


7. John is tests the boundaries just like our other children did (he will do something like drop things on the floor or get into things he knows he shouldn't and then look back at you).


8. John responds to no and being redirected the same as our other children did.


9. Everything he finds on the floor goes in his mouth.


10. John doesn't mind being passed around at big gatherings.


11. John can learn cause and effect just as our other children did. (thank you Baby Einstein and other light up toys).


12. John responds to his name being called.


13. John looks just like my others did at this age.

This is definitely not a completed list. But there are many more similarities than there are differences between John and my other children. All too often, we (my wife and I included) react negatively to these children because we think that they will require more time, money and effort. That may be true for some, just as there are non-Ds children who would fall into the category. But I can tell you that after 10 months with John, things have been more of the same little baby than have been different. I hope that has been true for you.

And for those of you that are looking toward a life with a child with Ds, I hope that you are able to take a little comfort from these words. They are truly worth the little bit of extra effort and do not deserve abortion. They will have a positive change on you and your families life.