Saturday, August 22, 2009

Goodbye Baby John...Hello Big Boy

The other evening before the start of school, we had an evening of getting everything together - back packs, lunches, etc. One of the things that had to be done was haircuts for all. It had been most of the summer since my boys had had a haircut, so they were overdue. So, I got the clippers out and started down the list of boys.

John was the first get one as he had grown a head of stringy hair that hung down into his eyes. It is true that it was cute and made him more of an irresistible baby, but those golden strings of hair needed to be tamed.

So much to my wives dismay, our little baby now looks more like a little boy. We find it interesting that he looks almost exactly like one of our other children when they were his age, and very much like his Dad at that age.

We feel like this has changed him but mostly it has changed our perception of who he is. We no longer see the little helpless baby that he once was. We see a boy with a big boy haircut and two teeth that does not like to be held anymore and loves to takes risks and explore his world - he is now standing and walking with hand held assist and even wants to let go to try it himself resulting in a few bumps and bruises.

He loves table food as we are trying to introduce as many as possible in order to increase his taste for foods and to increase his taste for different textures. We feel like we are in the middle of a transition with John as he is being challenged daily to be more independent and to develop more self motivation.

Here is our John sporting his new haircut and showing off his new independence. Hope you enjoy them.

Saturday, August 15, 2009

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

Sunday, August 2, 2009

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.