Friday, December 17, 2010

Life With Sons

I had four girls in a row before any boys came along. I remember life being much more quiet and reasonable.
I have always made Christmas cookies to share with others, and included my children in the process of baking and decorating. I realized last evening how different it is to make cookies with boys, than it was when the girls were all little.
Last evening we were decorating sour cream cut out cookies. I found myself saying odd things, such as: "don't lick the top of the cookie to smooth the icing". "If the little golden dragees fall on the floor, don't put them on the cookies. We have plenty more." "Don't put your nose on the cookies to smell them". "No, we don't want all the colored sugar mixed together". "Don't hit your brother with the icing spreader". (For those of you who recieve cookies from us, I have those cookies kept seperate, for family consumption only, not for sharing!)

The odd comments continued today. "If you put your finger in your sister's mouth, she will bite you". (This was said as Trinity chomped down on Christopher's finger, and he let out a blood curdling yell).
"Let's not put our pb&j sandwich on the Christmas tree, please." "and don't feed it to the dog either!"

Life was much more peaceful with only girls, but I have to admit, it was not as interesting and fun.

I also had some "awwwww" moments today. Josh made cards for me out of constuction paper, that said "I love you mom". He covered them with Xs and Ls, he doesn't get the it that it is supposed to be Xs and Os. But that is ok, I know what he means.
Another precious moment was when Christopher signed "Signing Time" to ask to watch the DVD of that title. He has been signing and saying many of the words he is learning from the DVD. He signs for "cat" and "dog" as he calls for our pets. He signed "tree" while we decorated our Christmas tree last night. How's that for a Christmas gift?!

Monday, December 6, 2010

The Spouted Sippy Cup

In a previous post I shared our discovery about the spouted sippy cup not being a good idea for children with Down syndrome. I wanted to report our progress.
I had thought we would wean Christopher off his sippy cup. I thought he would feel deprived, or frustrated, if we did it abruptly. But I discovered that as long as I had the sippy cups in circulation my girls, who are wonderful helpers, were continuing to give him his drinks in them. So, the spouted sippy cups had to go! I bagged them up to store until we need sippy cups for Trinity. The transition has gone smoothly.

What a big difference it made! He is doing so well with sucking from a straw. He is even working at drinking from a regular cup. He is having better lip closure and the drooling has decreased greatly. He still needs reminders to keep his tongue in, especially when he is tired. But that is happening less often.
Last night, when he gave me kiss at bedtime, I did not need to wipe the drool off my face. Ahhh, I like nice dry kisses from my little guy!

Since Christopher got the tubes in his ears, he is again saying many words and attempting many more.
We are also playing a kazoo, blowing whistles and sipping from the long bendy straws. All this leads to better lip closure, tongue control and stronger mouth muscles.

Progress is so exciting!

Sunday, December 5, 2010

Life With Christopher

When Christopher was born and diagnosed with Down syndrome I knew my life would never be the same. Just because it would not be the same does not mean it will be bad. I'm certain I would not want it to be the same.

I have heard some people believe that children with Down syndrome see angels that the rest of us cannot see. I don't know how they come up with this theory.
This is what I believe Christopher sees. He sees the puppet show in every sock! He spends his day gathering random socks, or taking the socks off Trinity's feet, or his own. Then he puts them on his hands and starts a dialog, one sock talking to the other. It is very entertaining!

Christopher also sees the dance in every song. He can dance to anything, whether it is a worship song, Elmos's World, or a commercial jingle. He is never at a loss for dance moves.

Christopher also sees the need for every foot to be tickled. He sees every lap as a place for him to sit and snuggle.

Wednesday, December 1, 2010

The Long Awaited Appointment

Josh had his appointment with the lens specialist today. The insurance finally got their act together and negotiated reimbursement with the doctor.

The lens specialist was very personable, and had a sweet way with Josh. After examining Josh's eye and using an expensive looking contraption to take measurements, he went to another room for a lens. The lens fit well and Josh was was able to see again.
When Josh read the eye chart, he tested at 20/60. The doctor commented how remarkable that was. I pointed out that Josh had been seeing 20/40 before the contact lens problem began. He felt confident we will get him back to that again.
The lens Josh has now is on loan to him. We will see if it continues to feel well in Josh's eye, and the specialist will make Josh one of his own next week.
Josh has a lot of scar tissue on and in his eye from the six surgeries he had. It is no wonder the Silsoft was not fitting well. He also has a ridge from the way the Silsoft cupped the eye. The new lens will have a larger diameter and will extend beyond the ridge.
The doctor warned me the new lens is more delicate than the Silsoft lens and I will need to be careful when I remove and clean it, or it will tear. Ahhh, one more thing to worry about.
All in all, it turned out to be a faily simple visit. Much easier than the one Josh had when he was 2days old and was first diagnosed with PHPV.