FinlayFamily

We have had quite a dry fall, but the past week or so we have started to get a lot of snow. Needless to say, it is hard for me (with twins in tow) to get out to shovel off the sidewalk and driveway when it snows during the day. As I looked out the front window the other day after more snow, I commented to myself that John would have a lot of snow to shovel when he got home and I hope it wasn’t too dark by then. Joshua overheard me and came up with the cutest little angelic look on his face and said “Mommy, can I shovel the snow for you??” I told him he certainly could. He bundled up and went out to work. He worked and worked all the while singing to himself. I just had to take pictures. He was such a great helper. While I was out taking the photos, I overheard our neighbor (he was also out shoveling and apparently didn’t see me). He said “Joshua you are such a good worker. I am really impressed with how much you are helping your family by shoveling the snow.” After almost an hour’s work, I finally had to make Joshua come in. His little face and ears were bright red. But, what a big smile he had on his face. He was so happy with the service he had given to me!

We had a “Breakfast with Santa” at church 2 Saturdays ago. Of course, the highlight was the Santa part! At least, for Emily, William, and Joshua. The twins were not so sure about sitting with a strange man with a furry beard. The first time around, Emily and I had to sit with Santa and the twins to get them to go to him. Kathryn just hid her face, she wouldn’t look at Santa at all.  Rebekah felt bad a few minutes later about not sitting on Santa’s lap by herself and begged to go back for a second try. She sat on his lap by herself that time, but she was very shy about it and had all of her fingers in her mouth for comfort. When she came back to me she kept saying “He say HO, HO, HO to me! He say HO, HO, HO to me!” and was very proud of herself.

Emily recently had a school assignment to decorate Santa to reflect what he does for fun on his break after Christmas. Her idea was that he is a Prima Ballerina! Here is her finished project. My favorite detail is the tiny pink bows tied into his beard.

We have started a new Christmas tradition in our household. A personal, decorated Christmas tree for everyone’s bedroom. The trees are really inexpensive 2 foot trees (we are talking 50 cents on clearance after Christmas). The decorations are a combination of homemade, and a $5 each allowance at a hobby store when they were having 50% off ornaments.
It was the very first Christmas decor we set out this year. The kids and I had lots of fun setting up those little trees. They loved finding just the right spot for them in their rooms. We all thought it was a great new tradition that we will continue for years to come.

Today I was observing that we have a very unique situation in our family. A situation that I never even knew existed until our beautiful little twins came to our family so early and so sick and with so many complications. I thought I should document this situation for us to remember and reflect on when Kathryn is older and this unique thing is no longer a daily routine in our family.

Kathryn was extremely sick when she was born. Because of this she was on ventilator machine for the first 2 1/2 months of her life. Every sensation that she received in her mouth was painful or scary to her. Once she got off the ventilator and could breathe on her own, she did not know how to close off her airway to swallow her saliva or food into her stomach instead of her lungs. Because of these two problems, Kathryn was not physically, emotionally or psychologically able to eat by mouth to sustain her own life.

After consulting with the doctors and surgeons, it became apparent that the only way Kathryn would ever be able to come home from the hospital would be with a gastrostomy tube (g-tube) and a Nissen fundoplication. The g-tube would allow us to feed her formula through a syringe directly into her stomach. The Nissen procedure would prevent any of the contents of her stomach from being able to go back up her esophagus, where she would still swallow it back into her lungs. It also prevents her from burping or throwing up, which are the risky side-effects of this life-saving and very horrible procedure. 

So, after over 2 years of feeding her this way, it has become very routine in our family. Kathryn eats (or tries to eat) with our family at the table during the meal, then Kathryn gets her “tummy food” after to fulfill her calorie needs. Even Emily and William are capable of preparing the tubing and hooking her up to help with Kathryn’s feedings.

Earlier this year, Kathryn was not digesting the commercial formula very well and was not growing very well. I looked into using a commercial-grade blender to blend the prepared formula with whole foods that would be in a typical diet: meat, grains, fruits, vegies, oils, etc. John and I made it a priority to come up with the money to buy a Blend-tec blender (see Willitblend.com for some funny videos of what they try to blend with this blender) The blender works wonderfully well. I put everything in there: oatmeal, rice, potatoes, boiled eggs, chicken, even beef and raw vegies; and this blender grinds it up fine enough to go through Kathryn’s 1/8 inch diameter g-tube just great! Kathryn’s complexion and growth rate and digestion have improved so much since we started doing this. It makes me feel happy to know that this is something I can do to help her in her special situation.

Someday we believe that Kathryn will learn how to eat on her own. We have made a lot of progress since she came home from the hospital in this respect, thanks to her wonderful, WONDERFUL therapists, and lots of hard work and daily dedication from all of us in her life. She will now play with food and taste food and sometimes chew food and occasionally swallow food. She is finally swallowing water with a minimal amount of choking. We will continue to encourage her and praise her and offer her opportunities everyday and eventually the process will lead to her being capable of consuming enough calories by mouth to sustain herself. The thing I have learned the most in these 2 years of “feeding therapy” is to enjoy the process. It isn’t everyone who gets to be a mom to such a unique and wonderful little girl, and go with her on such a unique journey.