Me & My Favorite Girl

At Emerald Downs, Saturday, June 5th, 2010.

2nd Children's Hospital Visit

We had our 2nd Seattle Children's Hospital visit last Friday. It went well. Kyla did amazing. 4 hour drive over the mountains and then 1 hour from my Aunts house in University Place to Seattle for her appt by 2 PM. And 2 hour drive in rush hour traffic from Seattle back to University Place for the weekend. 7 hours in one day riding in the car and about an hour and a half appt at Childrens with no melt downs = perfect baby.

The appt went great. I have to say, I love the staff at Children's. They are amazing people. They all are just super easy going and laid back and are so good with kids. They don't rush you, they answer all your questions, they make you feel like you are their only appointment of the day and most importantly they love your kid and don't look at them like they are different than anybody else. At the beginning of the appt we talked about the type of prosthetic we thought would be good for Kyla and we agreed on a baby mitten. A little different than the hand we picked out when we met with a prosthetist here in the Tri-Cities. Basically this is just the recommended beginner hand. I also asked how we can get a cute one and I guess it's just cloth fabric that gets lamintated in the process of making the arm. So I am going to go to the fabric store and see what kind of cute fabric I can find. They had some baby pink with a tiny bit of glitter there already so if I can't find anything, I will just use that.

The lady we met with tried a donated baby prosthetic on Kyla and it was a little big. Kyla shook it a few times to try and get it off and then ignored it. :) The lady said that Kyla will require a harness that wraps around her body to keep her prosthetic on since the piece of her lower arm is so small. This is fine, but I was hoping she would not need the harness. She did say that when she gets older she might not require this since she will not have so much flesh (baby fat) on her arm as she gets older.

After picking the hand, trying on the prosethtic to see what it will look like, etc. they did the molding process, which I had to sit her on my lap for (I did not get any photos of the process and honestly, I wouldn't have felt right taking a picture anyway). They soaked a large "wrap" in water and started wrapping her arm with a gauze fabric that had something in it...hmmm I can't think of the word right now, but it had like clay type stuff in it that hardened and formed a mold of her little arm. They marked areas of bones in Kyla's arm to be sure they built in pressure reliefs in those areas so that there is no rubbing and it is as comfortable as it can be. They also took several measurements of her arm, her little arm and her hand (they build the prosthetic there at Childrens) and Kyla did amazing. They kept asking her if she was trying to be the "best baby ever?" She just sat there watching them and taking in what they were doing. I think she liked the measuring tape and gadgets more than anything else. She is so curious. They cut the mold off with a razor blade (which scared the crap out of me...I thought for sure they were going to slice her little arm... they didn't thank goodness) and we were pretty much done. They will build the plastic mold of her arm and we have to go up in two more weeks from now for them to try it on to be sure everything is good and then they will finish the arm and we will have to go up again to actually get the arm. This might seem like a lot of headache right now, but I would not deny Kyla this opportunity or experience. Both Greg and I think it is important for Kyla to learn how to use a proshetic and her little arm just the same so that when she is 8 or 9 or whatever and is old enough to make the decision for herself, she will know what it's like to have both and can make an educated decision. My plan is for her to wear her arm for 2-3 hours/day and no more. We are not trying to hide her little arm or force her to have something that she doesn't. The lady we met with at Children's said a lot of parents are very concerned with getting their children prosethtics that look as life like as possible. I just think that is dumb. WHO CARES.... for reals? I'm so at the point where when I see people who look at her funny it only tells me that they are shallow people who I would never care what they think about my daughter anyway. The funny thing about going to Children's hospital is we walk around and there are all these kids there that look perfectly fine but obviously they aren't or they wouldn't be at Children's. There are so many kids or people for that matter that have something wrong with them but it's not always visible, maybe it's internal or hidden by clothing or whatever. Anyway just being protective Mama again, kind of got off subject.

We took Kyla to Emerald Downs (horse racing facilty near the Seattle area) on Saturday and we had a lot of fun. It was a beautiful day and Kyla laughed when I took her up to a horsey and petted it. She thinks animals are funny for some reason; she is a crazy kid!

Trip to Seattle Tomorrow

Tomorrow is another trip up to Seattle for Kyla's appointment at Children's. They will do the molding of her arm at 2 pm, then over the next few weeks will make her arm. I'm going to try again to get a cute pink prosthetic or at least something cool and not boring like skin color. She's a baby, why not make it cute or interesting, so she will like the thing! We'll see if Children's has more options than the office we went to already here in Richland.

We took Kyla to the playground by our future new house last weekend and a family showed up and within a few minutes a boy just point blank asked us "What happened to her arm?" We tried to explain to him, but kids just don't get it. Not sure how to make it so that they can understand, or if it is even possible. Then I saw him walking around the playground pulling on his arm for the next few minutes.... He came back over and asked how old she was and said she was really cute. It was the first time I'd had some random person (or kid) ask about it. Not a big deal, but somehow I should try and come up with some way to explain sort of what happened when kids ask.

Life has been pretty hectic lately and I'm exhausted. Can't wait until we are in our new house and all of the nessicary remodeling has been done. Will be good to get settled somewhere. Moving with a 9 month old (Kyla will be 9 months Saturday) has been VERY interesting. I don't recommend it.

Anyhow, Kyla is now rolling to get places and can't be left alone. She is no longer stationary and even though she only has one hand, that one hand can do amazing things (as far as getting into stuff she shouldn't be getting into) :) I love my little baby. She is becoming more cuddly and I try to tell myself to enjoy every moment of cuddling and loving on her, because this isn't going to last forever! :(

Update

So many things have been happening, we are in the process of moving out of our house and buying a new one, and in the meantime our family is staying at my Dad's. It's getting crazy but is going to get even crazier!

I scheduled Kyla's molding appt at Seattle Children's for June 4th, 2010. They will take a mold of Kyla's arm so that they can make her prosthetic. We will also choose what kind of hand we want for her, but I believe in the beginning it is just what they call a "doll hand." Basically this will just get her used to wearing a prosthetic, and she will be able to hold her bottle, balls, toys, etc. I will be sure to take photos when we are up there of the molding process and will post them. I do not think it will take long to get her arm back, probably no longer than a month, so we will once again have to travel back up to Seattle to get her arm, and they will do the fitting and then we will see how she reacts to it. Hopefully she won't hate it, but will find it useful.

The next couple months are going to be an adventure!

Ready for Summer Fun!

So my baby is just adorable... don't have to tell me twice! :)

Scars on Upper Left Leg

Now that the weather is warmer and I am putting Kyla in t-shirts and pants, I have discovered several scars on her upper left leg that I know without a doubt are scars where Amniotic Bands were attached but did not wrap around. When Kyla was born I noticed the largest scar on her leg in the hospital, but no others. I remember thinking it was really weird and I was so drugged up that the thought crossed my mind wondering if the doctor had cut her when I had my c-section, but of course that wasn't the case since it was all healed up. It is hard to see the scars in this photo, but when I press on the largest scar it is deep and very easy to feel. They all look like someone took a sharp razor blade and just pressed down in a straight line. There are also scars higher up on her thigh, but they are very small. I am not sure in total how many there are, but I know these are from bands because they are on the left side, the same side where her arm was amputated by a band and I have not found anything on the right side of her body... I am so grateful that nothing ever happened to her leg. I cannot imagine how hard that would be if she would've lost her leg as well. The idea of ABS is that it doesn't affect just one area of the body, but several.

So originally people had asked me if I was going to talk to my first OB doctor about Kyla's situation and I have always said no and haven't seen the point...but seeing all these scars makes me think, how many bands were inside of the amniotic sac??...There must have been several so why didn't they see that in the ultrasound? I seriously have been thinking about contacting my first OB doctor's office and requesting my first OB ultrasound notes (18 weeks gestation) be sent to me so I can see if it says anything on there about the bands and arm amputation. I wouldn't be surprised at all if they did, and if there were notes on there and I just wasn't told about it. If that is the case, then I might be somewhat tempted to file a complaint against the doctor. Just so he can no longer practice OB and retire like he probably should. I don't know, I know I should not be angry or anything, but seriously if a doctor doesn't review test results like he should then why should he be allowed to practice?

Another Cute Photo of Kyla

Eating her rice cereal. She likes to get messy, but in this photo she is actually very clean!

Meet & Greet with Orthotics Doctor

Tomorrow we meet with an orthotics doctor here in the Tri-Cities to see if we want to go with them to make Kyla's prosthetic arm. There are 3 orthotics places here in the Tri-Cities, however I am going to make sure that whoever we go through knows what they are doing, or else we will just continue to make trips up to Seattle and will work with Seattle Children's Hospital. The lady we are meeting with tomorrow has been doing pediatric prosthetics for ~ 20 years, so it sounds like she knows what she is doing. (Let's hope). I attached a current photo of Kyla. She is getting so chunky and cute! The really neat thing is that she is using her little arm a lot when she is in the bathtub and her toys float at arm level, making it easier for her to utilize her arm. I'm still searching for a part time job so that when we do have Kyla's prosthetic arm here and she is wearing it, I will have the time I need to work with her each day. Crossing my fingers on this one, that something at the right level will come up since I'm almost topped out in my job category.... So we'll see!

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).