Standing on Faith: Summer Kickoff!

Sunday, May 31, 2009

Summer Kickoff!

What better way to kick off summer than having a good ol' marsh mellow roast! It was so nice relaxing by the fire and having fun with friends. As you can see, the boys thoroughly enjoyed themselves.

Summertime is here, and I am filled with a mixture of emotions. I am so thrilled to have some time off, but I know with this extra time comes down time to think of and miss my sweet Allie. It is so hard not to think of what my summer would have been like having both of my babies home with me. I just think of all the fun we could have had. She would have been close to a year old and probably pulling up and trying to walk or something. Anyway, I do have several projects that I am wanting to complete to honor My Little Angel like: her butterfly garden, shadow boxes, her blanket, her scrapbook, hanging more pictures, etc.... Of course, I will be doing many activities with Mason as well, so I am planning on staying busy. I will be blogging soon about a memorial project that I have had in mind on doing for Allie's one year Birthday, and I'm going to need some help from all of you. So I will keep you posted, and I hope all of you have a Fabulous Summer!

P.S.
The twins are doing well. Their names are now Catty and Chompers ~She rightfully earned the name :). Mason thinks that it is hilarious. We are still in the process of getting our dog to love our new kittens. Not having much luck with that, so if any of you have suggestions we are all ears :) Thanks.

1 comments:

Robin, June 1, 2009 at 7:26 AM: I know you are so glad to be finished with school for a few months! It looks like ya'll had a great time!!

{{HUGS}}

Robin :o)

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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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Sunday, May 31, 2009

Summer Kickoff!

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