So my baby is just adorable... don't have to tell me twice! :)
Monday, April 26, 2010
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?
Thursday, April 8, 2010
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!
Monday, March 29, 2010
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.
Friday, March 19, 2010
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).
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).
Thursday, March 11, 2010
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).
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).
Saturday, March 6, 2010
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.
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.
Thursday, March 4, 2010
Wednesday, March 3, 2010
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.
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.
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