Calories, Baby Food and John

John is now five months and 1 week and weighs 13.5 lbs. We started him on jar baby food #2. Fist starting out, John had trouble knowing what to do with his tongue as do all babies in making this transition. He would thrust his tongue out, therefore getting most of the food on us and himself. After working with him on a daily basis, he seems to be getting it. Now when we feed him, the tongue thrusts are fewer and he opens wide when the food nears his mouth. John sits in his bumbo chair at the table with us for meal times so he has noticed food for the past 3-4 weeks.

Normally, children with Down syndrome I think have more of an issue with transitioning from bottle to spoon because of the weak muscles in the tongue. This is one reason that we have chosen to keep John on the "slow flow" nipple for bottle feeds. The "slow flow" nipple makes him work harder in order to suck, therefore strengthening the tongue and jaw muscles. At this point in time, we are feeding John baby food 2x daily and he is guzzling anywhere from 26-30 oz./day. That sounds like a lot but when you calculate the caloric intake needed for good growth, it is probably minimal. Which leads me to my next topic - how many calories should my baby be getting.

Usually for proper growth a baby requires 100 - 120 calories/kg. To calculate your babies weight in kg., you need to divide your babies weight in lbs. by 2.2 since there are 2.2 lbs to 1 kg. On average, there is about 20 calories per ounce of formula with there being more in breast milk depending on the fattiness.

Working to meet benchmarks are usually not very important to us as each child is different and develops differently. But good caloric intake does matter to us as we feel that John needs all the bodily growth that we can give him.

Love and Acceptance

As a parent of five children, I have learned that one of the best things that a parent can give their child is love and affection. Love and affection is a human need for which we all strive. Children look for it from their parents and when it is not found at home, they search for it outside the home. If a child is given love and affection, they learn confidence in who they are and their abilities.

We have watched our 4 "typical" children be accepted wherever they go without question because of the similarity to others. Children with Down syndrome or other handicap are not as readily accepted for various reasons of which are ignorance and differences in appearance to name a few.

One of the goals that we as parents have is to raise our children in an environment that is loving, nurturing and accepting. Our immediate and extended family provides that to John but it is difficult to find that type of environment outside the family except through a church body.

Our local church body has wrapped John with the same love and acceptance that my other children enjoy. It is rare that we go to church and someone doesn't either take him and he gets passed from Mom to Mom or they ask about him. As said earlier, this environment allows John to enjoy and trust because he is learning that they love him and will treat him right. Some may wonder why this is.

I believe it is because that most people of faith look at people with a depth that penetrates the surface. They believe that the actual person is inside the fleshy shell that we all use to get around and communicate. So as John grows up in this type of environment, he will be free to be himself and not be ashamed of who he is.

I am reminded of the statement that was made by Coach Stallings from Alabama who had a child with Down syndrome. He said that the church was the best place for his child was church because of the love and acceptance of the people there. In the 5 months that we have had John and in the 9 months leading up to his delivery, we have experienced an outpouring of love and seen an unconditional love for John that is crucial to a child's life for them to thrive physically and emotionally.

Thanks to our church body for what you are giving to John. We enjoy sharing him with you because we know that you love him too.

A Look Backward

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.