Standing on Faith: Snow in the South

Tuesday, March 3, 2009

Snow in the South

What a fantastic weekend! We went from splashing in mudpuddles on Saturday to playing in the snow on Sunday. I know those of you that are not from the south are laughing your heads off at us right now, but getting snow in the south is a very rare occasion so we get extremely excited when we finally get snow :) We had a blast!!!! Saturday the boys, this includes Mason's 'buddy', did what all typical 3 year old boys would do when they saw a mudpuddle. They jumped, ran, and splashed in the puddles until they were completely drenched from head to toe with mud. I mean, they literally rolled in the mud like little pigs, and enjoyed every second. We thought our fun had reached the ultimate peak until Sunday morning arrived. Our yard was covered with SNOW!!! How excited we all were! We had snowball fights, we went snow sledding, we built snowmen, and we had hot cocoa. We truly enjoyed ourselves, and there were a few moments when the adults were begging the kids for one more slide. My face muscles were actually sore at the end of the day from smiling, because it has been so long since I had used them. Of course, the rest of my body was aching also, but we will not go into that discussion. Let's just say that it has been a while since we have had a good snow in the south, and I was a lot younger the last time I played in the snow. This past year has been quite difficult, and recently we have been so depressed, and I was thankful to finally have a moment of true happiness. Allie was still on our minds throughout the day, and we each had some moments of sadness as we thought about what she would have done in the snow and wishing that she could have made it to see her first snow. As our snow day ended, we visited the cemetary and built a baby snowman for Allie to see from Heaven. It was a wonderful, winter, weekend, and I am grateful to God for the small moments of joy.

Dorrie's first snow. She didn't know what to do at first :)

Best Buddies!

Phew, at least we had the slide to stop us.

Maybe I will try ............

Nope, he's not as young as he used to be either.

I think we made it.....

Awww... Wipeout!!

Yes, the water was ice cold and maybe I am regretting letting the boys turn that spot into a huge mudpuddle the day before. Those layers and layers of clothes I had on were no match for it :)

Sending a snowman to Heaven

1 comments:

Robin, March 4, 2009 at 5:33 AM: I am so glad that you all had so much fun, even Dorrie! Mason looks like he is having the time of his life! And BOY was your snowman big....ours was teeny-tiny.
I know what you mean about being sore.....WOW, it's been a long time since I've played in the snow!! ;o)

{{{{{{{{{{{{{HUGS}}}}}}}}}}}

Robin

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What is Trisomy 18?

I would say that this is probably one of the most difficult disorders to try to explain simply because every case is different, but I would like to try my best to explain T18 in my own terms from my personal experiences and research I have read. For the most part, unless the child has major physical disorders or you know the markers to look for, T18 babies look perfectly healthy. Most people would probably pick up on their small size and possibly their low set ears, but some could easily go undiagnosed if it was not caught before birth.

T18 is a chromosomal disorder, also known as Edward's Syndrome. There are three different forms: Partial, Mosaic, and Full. In the partial and mosaic forms of T18 only a portion of the cells are affected, therefore having a greater chance to thrive. Allie had the most severe and most common form of T18, the full version, which means that every cell in her body was affected. When the baby is forming, somehow the 18th chromosome picks up an extra copy. Instead of only having two copies of the 18th chromosome, there are three copies. It was nothing that the parents did or didn't do to cause it to happen. This extra matter in the cells causes major complications during development. There is no way of knowing exactly which areas were affected the most or to what extent, so there is no way of knowing what complications each individual may have until further testing is done.

Even though each case is unique, there are many similarities that most full T18 babies have. Most have some type of heart condition (Fortunately Allie's heart condition was not serious, and she was able to live without heart surgeory~ others are not as fortunate). Some of the physical features they may have are small weight, low set ears, small mouth, tiny nasal passages, tiny ear canals, clinched fist, index finger overlapping middle finger & pinky overlapping ring finger, deformed chest, prominant nose, short big toe, and a small head due to their brain not developing to its full size; of course, since their brain does not develop to its full size this causes many other issues. Since every cell is affected in full T18 babies, they could possibly have major malformations with their internal organs. I know it is common for them to have kidney problems. There have been some reports of inverted colons, malformed intestines, esophogus problems, underdeveloped lungs, etc. We did not go exploring with Allie to see exactly what other internal complications she could possibly have. We figured if everything seemed to be working fine that it was not necessary to put her through any further testing.

The reason most parents are faced with difficult decisions is because these babies are not just a baby with a heart problem. You cannot just do heart surgeory and fix them. I would say the biggest complication is the brain. Your brain tells you to breathe, swallow, move, etc. Since T18 babies' brains do not fully develop, that means the automatic sensors that control the body did not fully develop either. Only God knows when this sensor will not be mature enough for the baby to keep thriving. Just like in Allie's case, it did not matter how well she was doing, when her brain was no longer able to send out the proper signals to the rest of her body, she was no longer able to thrive.

There is no way of knowing how long each T18 baby will live. The life expectancy varies for each individual case. Some are not even able to make it to birth, and the ones that make it to birth usually don't live to see their 2 month birthday, but there are a few who are able to thrive for years. Most of their lives are counted in days. These children are such a blessing to know and love, and I feel very strong that each one deserves the chance to prove how long they can thrive in this world. I hope that this information gives some help in further understanding Trisomy 18.

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Tuesday, March 3, 2009

Snow in the South

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