Prosthetic

My Husband and I have decided that we ARE going to get Kyla a prosthetic. After talking with the two Mom's I met in Seattle, I have decided that it would probably be the right choice for us. Originally we were thinking we wouldn't go this route, but that has changed, mainly due to talking to other parents who have already gone through and experienced things we have yet to experience. Prosthetics can be VERY expensive, sometimes as much as $20,000. I called my insurance last week and they said prosthetics are covered at 100%, so I plan to call back up to Seattle tomorrow and let them know this is what we want to do. One of the Mom's I met started her daughter out at 7 months of age and the other at 9 months. The only somewhat downside to the whole thing is either myself or my Husband have to work with Kyla on using her prosthetic for at least an hour a day, if not 2 or 3 hours/day. This is on top of her physical therapy we already do. So.... it's going to take some of our time, but I guess getting them started learning how to use their prosthetic limbs when they are young is the key to ensuring success if they chose to wear one once they are an adolescent/adult. Greg thinks she will look super cute too, which she already does. ;) I saw a photo of a little guy online once and he had a little "Finding Nemo" prosthetic... they look like a mitten hands at first, but then as they get older, change. I am wondering if they have a Disney Princesses one...totally going to get that one for her if they have something like that. Anyway, super tired and irritated that I do not have a computer that is either 1) working right now, or 2) the video card reader is working right now.... I really need to get some current photos uploaded. Anyway that was off subject. Going to go relax with the Hubby now. Post more when I know more.

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).

Seattle Children's Visit

Per my request, Kyla's pediatrician sent a referral for her to Seattle Children's Hospital the first of this week. Kyla's pediatrican was going to send us to Shriner's Hospital in Spokane sometime this summer, however after talking with other Mom's who have little ones with ABS, I decided Seattle would be the best place for us to go.

I received a call from Seattle Children's on Tuesday and scheduled an appointment for her in May, 2010. I got a call back at home that afternoon asking if we could come next Wednesday, March 17th, 2010; of course I said yes. After the receptionist spoke with the doctors we will be seeing, they requested that Kyla come earlier, because there will be several other families with children who have limb differences at next Wednesday's clinic as well.

I am super excited and looking forward to getting networked with the right doctors and having the opportunity to talk with other parents who have children similar to ours.

We will visit with 3 doctors while we are there. Two of the doctors are from Seattle Children's Hospital; one does surgeries, the other prosthesis, and another is from the University of Washington.

I will update the blog with more info. following Kyla's appointment! I am anxious to learn more about the condition and treatment options (if any).

What People Think

When Kyla was first born and people saw her for the first time, I found myself (and others) automatically rushing to explain her arm and describe what Amniotic Band Syndrome is. It was like we were almost trying to beat people to the punch. (Is that how that statement is made? Not sure, but you get my point...) Most people would react surprised or confused, but were never rude. To this day I have only had one person be somewhat rude about Kyla's situation when talking to me, and even then I was probably being more of the defensive Mom than anything.

Now that Kyla is 6 months old and most people know about her, I am starting to get to the point where I just do not care about what others think, and I do not feel like I have to explain her to strangers or anyone really. It does make me nervous when I have to meet with people who do not know her or know of the situation, because I do not want to have to deal with the questions and explaining her to people. Since I no longer feel like I need to explain - I just don't say anything and usually nobody asks - I can see people look, but they don't make a big deal out of it. I'm sure they would like to ask questions, but maybe they can tell that I am not welcoming to them. WHEN I really should be, since my whole thing is wanting to create awareness of ABS. I guess I feel that since most of the people are strangers, then there is no need to explain. She looks a little different - big deal.

I am sure I will get better about this with time, because I am going to have to get used to the questions and explaining her situation to others. Like it or not, she needs a strong Mom and Dad who are comfortable with the situation, even in awkward moments.

Both myself and my Husband (my Husband especially) do not have any problem voicing our opinions, (ha..this is a good way to state it) if we need to. So if someone stares too long or says something rude, I'm sure things will be said to these people. Kyla's Daddy is very protective and when him or I are around, we will ensure she is treated the way she should be. For times when we are not around, we will try the best we can to explain to her that she is different, and people will look and wonder, and this is okay, but to speak up if she feels people are being rude towards her.

I believe all-in-all Kyla will do just fine. It is our job as her parents to help her through all the rough times she is bound to encounter in the future.

'The Big Day' Photos

Physical Therapy

A month or so ago Kyla's pediatrician noticed that she has a tilted head, so she referred her to physical therapy for treatment. The technical term for her tilted head is torticollis. http://en.wikipedia.org/wiki/Torticollis

Kyla has been going to physical therapy twice a week to straighten her head. The therapists do stretching exercises to loosen up the neck muscles on her left side, and exercises to increase her range of motion of turning her head to the left. She seems to be getting straighter, but there is still a definate tilt. The majority of the therapy is given by myself and my Husband at home, however Kyla is not a fan of her stretching exercises, so she fights everytime, making it unenjoyable for her, and us.

The therapist told me a few weeks ago that she is pretty sure her head tilt is a result of her limited ability to use her left arm. She constantly uses her right arm and hand, since she can grab things and use it more, therefore she is always looking to the right; creating the tilted head.

With Kyla's increased mobility, her torticollis should correct itself.

The Big Day

I was scheduled for an ultrasound around 11 a.m. on Friday, September 4th, 2009 at my OB/GYN's office. My doctor wanted an ultrasound performed due to my low weight gain during the last few weeks of my pregnancy. Very soon into the ultrasound, the sonographer told me that my placenta was "shot." Her description of my placenta made me nervous, but I knew this day was coming. She quickly got my doctor, who recommended I have a cesserian, because the baby was already very stressed from not receiving the nutrients and oxygen that she needed, and that I had two options, 1) have the baby that afternoon or 2) have the baby first thing the next morning. I told my doctor that I didn't want to do either; I wanted to have a normal delivery and go into labor on my own. After all, I had been having contractions off and on for a couple of weeks! I ended up choosing option #2, because I wanted to be rested and prepared and ensure my family would be there.

My Husband and I left the doctors appointment and quickly focused on everything that needed to be done - bags packed, phone calls made, work notified, insurance notified, etc. That night I could not sleep, and finally decided to sleep on the couch, so that my Husband could get some rest. I slept for probably 40 minutes the entire night, and we were off to the hospital around 6:45 a.m. the next morning.

On the drive to the hospital I told my Husband "I have a feeling something isn't going to be right with her." He said "well, if that is the case, we will handle it and deal with it the best we can, God is not going to give us more than we can handle." Looking back, I believe God had prepared me mentally for what we were about to experience, since I had this gut feeling from just about the very beginning.

9:30 a.m. came, and I was walked into the operating room and giving the epidural. After a couple of minutes, my Husband was allowed to come into the room, and the operation was underway. As soon as the doctors pulled my baby out, I remember hearing her cry for the first time. It was the sweetest thing I have ever heard. It was so strange for me to know for those 9+ months that there was a living being inside of me, but it was not until the moment I heard her cry that it all became very real to me. After hearing the cry, I remember thinking "good, everything is ok." That was until I heard my doctor's wife say to my doctor, "are you going to tell her?" My doctor didn't say a word to me, and my Husband looked up over the blue sheet, and began to repeated "what happened to her arm? Where is her arm?" Listening to everything that was being said, I was laying there strapped to the table, wondering what was going on, but knew in my mind, that something with her arm must've been what I knew in my mind would not be normal with her. I still had yet to see my baby and my Husband began to panic. The nurses and doctors all rushed to him and attempted to push him into a chair, because they thought he was going to pass out. Because of everything going on, it started to upset me and I could hear my heart beat on the machines begin to beat faster. The anisthesiologist told me he was going to give me some medicine to calm me down. I didn't say anything in response, and he injected the medicine into my IV. I do not remember much after this, but I do remember looking at my baby lay on the warming table under the lights and I could see her arm from a distance. Soon later, my Husband brought my baby to me and I gave her a kiss on her forehead. Kyla and my Husband left the operating room and were sent to the nursery, while I was sent to the recovery room, and was kept for several hours - just me and the nurse.... nobody else was around. I remember asking the nurse when could I see my baby, and when could I see my Husband? Eventually my Husband was allowed to come visit me in the recovery room, because no other patients were in there at the time, and soon after that I was wheeled into a regular labor & delivery room where I got to hold my baby for the first time (see attached photo).

I was sad to see her arm and wondered why this had happened to her, but my feelings were short-lived. Of course these same feelings would come and go for several weeks and months to come, and to this day, they still cross my mind, but I believe my feelings are normal based on the circumstances.

During our four day stay at the hospital, Kyla got a lot of attention from the nurses and doctors - she got spoiled! She had TONS of visitors. My nurse told my Husband and I that the perfect babies are born to women who do drugs/drink/smoke during their pregnancies, and the babies with disabilities are born to the women who do everything right. She said something about how she believes God gives the babies with disabilities to parents who can care for them. Her comments helped me to remember that Kyla was chosen to be our Daughter - there is a reason she was born to us. I have always been a strong believer in there being a reason for everything. I just had to remind myself of this, once again.