Standing on Faith: Say hello to the twins!

Monday, May 25, 2009

Say hello to the twins!

A true cat nap.

Well, as you can tell I love animals and I cannot resist giving them a home. I think I have turned Michael into a softy as well :) Mason has barely put them down. He fell in love with them at first sight, and we couldn't say no to all of those adorable little faces. Don't ask me what our facsination with gray animals is. I was hoping our next pet would add some color into our world. These kittens look like minatures of our previous cats Chubbs and Tator, and our dog is gray also. We haven't settled on the names yet. (Waiting to get to know their personality a little better). Of course, Mason has put his two cents in. When first asked what he wanted to name his cat he said, "I'm going to name it Pet." Wow, very imaginative! Then my mom told him that it was a girl cat so it needed a girl's name. He stepped it up a little this time and said, Catty. Watch out, genious here :) He later stated that he would name the other one Petty. We may keep Catty and just spell it as Caddie instead, but I'm not sure what we can do with Petty. I guess we will just have to wait and see.

3 comments:

Robin, May 25, 2009 at 6:21 PM: HOW PRECIOUS!! Jameson would have a COW if he saw those kittens. He told me the other day he wanted 60 cats and 12 dogs. LOL!
Those pictures of Mason are just priceless!

{{HUGS}}}

Robin :o)
Gramma, May 25, 2009 at 9:04 PM: Too late to call tonight (afraid Mason is asleep). Love the kittens! You know how I love cats, too. When I saw the first picture, I had to take a second look to make sure they weren't Chubbs and Tator. "Caddie." Perfect for an up and coming golfer. "Petty" may be very appropriate seeing how much petting they are going to get from Mason-not to mention from you and Michael. I'll have to talk later and get all the details. From the napping pictures, the kittens have taken to Mason as well as he has taken to them. What does Dory think about the new members of the family? Love and Kisses to all.
Gramma
Carla, June 10, 2009 at 5:58 PM: I just came accross your blog. Your little Allie is beautiful. I am a Trisomy 18 mommy too. My first son passed away shortly after birth 9 years ago. Since then we have been blessed with 3 more children but he will always be my first son and will hold a piece of my heart. I am glad to have found your blog and look forward to following it and looking back as you shared your daughters miraculous life.

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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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Monday, May 25, 2009

Say hello to the twins!

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