Standing on Faith: Our mountain get-away

Tuesday, February 17, 2009

Our mountain get-away

Yes, we are the crazy ones at the putt putt

in the cold and drizzly rain.

My boys showing off after sinking their putts.

Oh, the agony! That putt should have made it!

Such a cutie! Can't you see where our son gets his sweet smile from?

Our 'Little Tiger Woods'

Okay, we are not the only crazy ones.

His first train ride. Who cares if it was at a putt putt :)

Our visit to the aquarium.

Dudnt, Dudnt.....

He was just a blur running through this tunnel.

Yes, we are at another putt putt. He thought this was the only reason we went to the mountains. We took him three times, and I still don't think it was enough :) He loves it!

He has seen it all now.

Pigs can fly!

Enjoying God's beauty.

Deer playtime.

He loves the outdoors.

110% boy

Don't.....too late.

Peek-a-boo!

We got away this weekend to the mountains. It was a nice trip. I guess I had it in my head that this would be a 'cure all' trip, but that may not be possible right now. I had some very emotional moments while away. We received our first "Is this your only child?" question, and I simply replied, "No, we have two. Our daughter is in Heaven." Then, of course, they give you that pity look and tell you how sorry they are. I really didn't care if it made them feel uncomfortable, I was telling the truth. There was also a family staying at our hotel with a baby about Allie's age, and it was really difficult seeing them snuggling with the baby, playing with the baby in the pool, smooching on the baby, etc... I couldn't help but watch and envy. I was missing my sweet baby girl so bad, and I knew that she would have loved playing in the pool. I hated that she never got the chance to see the Great Smokey Mountains, but we did take her to many places and I am so thankful that we were given that time. I knew Saturday was going to be a tough day, and I was right. I think that it did help that we were able to get away. As you can see from the pictures, we were able to have a few moments of escape. It was nice being with my family and enjoying God's creation. Sorry for so many pictures, but I wanted to share each part of our trip with you guys. Thanks for all of the prayers and words of encouragement.

Love,

Susan

6 comments:

Anonymous, February 17, 2009 at 1:08 PM: It looks like you all had a great time getting away. Know that we are still praying for you! Love, The Harbins.
Robin, February 17, 2009 at 1:38 PM: Ohhh Susan, I am laughing and crying at the same time! You look like ya'll had such a great time. Don't apologize for the pictures, they are FANTASTIC!!! I am so glad that you were able to get away!
We love you!!
Robin (and Marty)
Anonymous, February 17, 2009 at 5:41 PM: Love the pictures! Thinking of you today with love and prayers.
Love,
Mom (Gramma)
Anonymous, February 17, 2009 at 8:29 PM: i am so glad yall had fun..we had the same getaway..but at christmas..we played putt putt at that place with the train to..dont you think the water was very blue..i left allie a bear on her grave hope you dont mind..i got brandon a puppy for his..and i couldnt leave her out. love you susan..and i am so glad that yall had fun. lots of love, kayla and wesley campbell
Anonymous, February 18, 2009 at 1:37 AM: Looks like little Tiger Woods had a good time and it was good to see smiles on your faces. I am glad you all got to get away. It does the soul good!
Love you,
Amy
Jed, February 20, 2009 at 11:12 AM: Such great pictures. I am so glad you got to go away as a family. Looks like Mason had a great time. I am praying that God continues to give you the strength to help you through this difficult time. I am sure Allie is watching you with love as you try to get over you loss.
Love, Lynne

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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, February 17, 2009

Our mountain get-away

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