Children's Hospital Appointment

Kyla's first appointment at Seattle Children's Hospital was this past Wednesday, March 17, 2010.

My Aunt and Uncle live in University Place so we drove up late Tuesday night and stayed overnight at their place before heading to Southcenter Mall! :) Yep we had to get a little bit of shopping in for Mom. We did our shopping and had lunch at the Rain Forest Cafe and requested a table right next to a large salt water tank that had a bunch of bright colored fish in it. I tried to show Kyla the elephants when they started moving around and making noises, but she wasn't too interested. She only wanted to sit in front of the tank and watch this one bright yellow fish swim around!

After lunch we drove to Seattle and as soon as we got there, just thinking about all the poor little kids that have to go to the Children's Hospital, I started to get a little emotional, but was like "okay you can't do this," so I stopped myself. Now that I'm a Mommy I'm all sensitive when it comes to children, for some reason.

Anyway, we barely got our badges and got checked in and started filling out paperwork and they called us back for our appointment. Now I was like super nervous. I have no idea why I got like this. My Husband was like "oh I'm fine, why are you nervous? Blah, blah..." but I could tell he was playing it off a little. I think for me, I just try not to think too much about Kyla's situation and here I was going to be forced to, and I also knew that we were going to meet with two other families that had daughters like ours, so that might have added to my anxiety. Who knows.

Sharon Greenberg was the first doctor we spoke with and then a resident doctor, I believe his name was Justin Olson was the next doctor we met with. So Dr. Olson was examining Kyla's arm and asking us questions, etc. and another doctor, Dr. Susan Apkon also came in to see us. There were lots of questions asked and answered and people kept walking in and out of the room, so it got to be a little overwhelming. At one point there were 10 people in our small room at once. It was a little crazy.

There were two other little girls at Children's at the same time as us who have arm amputations very similar to Kyla's. We met with their families and got to meet both girls. Both were about 3 1/2 or 4 years old. One had a myoelectric prosthetic arm, but had more of her arm than Kyla. It looked like she was only missing her wrist and her left hand. The other girl had a left arm exactly like Kyla's, where she had her elbow and a small piece of her left forearm and nothing more. Her family was there because they want to get her a prosthetic arm. The girl with the prosthetic arm was coloring on the floor and at one point stopped and looked up at Kyla and stared at her arm for probably 30 seconds or so, and didn't say anything, then went back to coloring. It was like she was thinking "oh that girl looks like me, or her arm is like mine." Overall very, very neat. The doctors kind of stepped out into the hallway and gave us some time with the other families. They thought it was really cool that we all got to meet eachother. I was asking the other Mom's questions almost the entire time and I asked about teasing and if it was an issue, and once I asked that question, I started getting teary eyed and the other Mom did as well, and then I started crying. LOL! Oh my......... so I'm sitting there crying, trying to get it-together and my Husband continued our conversation for me. I think just the fact that I'd only ever seen other kids that look like Kyla online - photos on a computer screen, and no one in real life, let alone, two of them at once was a little much for me to take in. It was just a really good experience. We exchanged contact information with the other families, so I hope that we can keep in touch with them. Both live in the Seattle area. Also, both Mom's knew about their daughter's amputations before birth. The little girl with the prosthetic arm was apparently born with several other issues (her jaw wouldn't close and I'm not sure what other issues she had) everything else looked completely normal with her. The doctors told the girl's Mom that they think her daughter's arm was a result of a blood clot that stopped the circulation, and therefore stopped the arm's development. The little girl wears her prosthetic for a couple hours/day and she is in gymnastics.

The doctors said that if we choose to have more children, this won't happen again. They said they have never seen it happen twice and they asked if we have family history of limb amputations and we do not, and the doctors said they have never seen family history of it either. The Mom who has the daughter who looks like Kyla was actually pregnant and due any day and her baby is completely fine. Seattle Children's has an annual social event for little ones with limb deficiencies in October, so I'm sure we will take Kyla to that every year so that she can see other little children that look just like her. At the very end of the appointment we went to Radiology and had her arm x-rayed to see what bones, etc. she has in her small arm. The doctors called with the results yesterday afternoon, but I was not home, so I will call them back on Monday to get her results. They did say that it feels like her elbow hyper-extends and that it is possible she is missing some bones in her elbow.

Once again, I have written a book. I seriously do not know how to summarize! ;) (Oh well, I want to document everything and every experience so that someday my baby can look back and read this).