Christmas 2010

We had a great Christmas this year.  Busy again of course but wasn't too bad.  By the way, my awesome Dad got me the best gift I've ever gotten for Christmas, the camera that I have been wanting for a long time, a Nikon D7000!!!  I was trying to hold back tears when I opened the card from him....  I was so excited and didn't expect it, I just expected some cash from him, which is his usual gift...  Now I will be able to get great pictures of Kyla as she grows up and HD video too.  It is like at the bottom of professional camera and top of amateur for Nikon, so I'm sure it'll take me a bit to figure it out.  Because the camera is in such high demand right now, it's back ordered for a while - won't probably get it until late January or early February which is fine, gives me time to figure out what lens I want and order that.  We had my Dad and Greg's Mom over Christmas morning and fixed breakfast for everyone (cinnamon rolls, scrambled eggs and bacon).  Then we went to my Mom's, and Greg's Dad and Step-Mom's for a bit.  Kyla wasn't sure how to open presents, the wrapped ones.  She does a lot better with gift bags.  She got some really neat toys this year and now I've got to figure out what to do with them all!  I'll probably take the ones she no longer plays with and put them in storage.  Here are a few of my favorite pictures from Christmas:  (this first one is my favorite - her Auntie Amanda got her the outfit and I had just gotten her out of the bathtub and dressed for the day - she still has sleepy eyes).

This last photo is a ladybug bean bag pillow Greg's Mom made for Kyla.  She likes to lounge on it and watch cartoons!

Video of Ky

Kyla loves to talk on the phone, she has pretty much ruined both my phone and Greg's, because we let her play with it, slobber on it and chew on it....  but when I do actually take my phone away from her, she sometimes uses the video baby monitor as her fill in phone.  She was of course talking on it like crazy before I got the camera out but she gets camera shy or just really curious and always stops what she was doing before the camera comes out.  I got her to do a little bit of her talking in this video (unfortunately the video is sideways...sorry).

Note:  We leave her arm down on her jacket so that her little arm stays warm.  It has poor circulation, especially when it is cold out, so if we leave it down it stays nice and warm, plus jackets are too bulky to roll like we do her shirt sleeves.  Looks a little funny, but I don't think anyone really notices when we are out.  I thought about learning how to sew good and at first I did cut some of her sleeves on her clothes, but then I was like thinking why am I doing this if I have another girl someday, all my clothes will be useless...  and even if I don't have another girl, someone else can use her clothes.  Most of the time it looks fine rolled and other times like for her Santa pic, I wanted that pretty red border at the bottom of her little arm too, so I just used a pin to tighten up the opening at the bottom so that it would stay tight around her little arm at the end and not fall off....  sometimes you have to be a little creative, or just choose the right tops for her.

First Day Home With Mama

Daddy thinks his baby blues are like to die for - greatest gift to the world.  HAHAHA.  That's almost true, but not quite - he does think his eyes are just gorgeous because he's had years of girls or women telling him that.  Then this little chicky came along to out do his.  :)  LOL.  I gotta say my baby's eyes are g to the r to the e to the a to the t.  (that's great).  When she was born she had NO eyelashes and now they like go up to her eyebrows.  I love it!  Unfortunately the curly crazy hair she gets from Mama.  :(

 

In the evening on Monday we took Kyla to the mall to see Santa.  I usually am against mall Santa's but I was impressed with the one this year - he was good!  I had to take a picture of the pictures we got because Mom forgot to pull out her camera when we were there.  Too much going on.  Her pants look like super small on her in the picture but they really aren't - Santa's pants were sticky and gave her high waters.  She did pretty good but wasn't thrilled with the idea of staying sitting on Santa's lap until we got a decent smile out of her.

Get Yourself Some Sermon

This is our church website's media library link.  http://bethel-church.org/media-library.php  By clicking on the link you will have access to all of the sermon's at Bethel Church.  Dave Bechtel is the pastor and he is great.  His sermons start out kind of random like lots of different thoughts and sometimes you wonder OK how does what he's talking about relate?  And then he pulls it all together at the end and you "get it."  I recommend anyone who needs God (which is everyone, even if you don't think you do) to watch these videos.  It's great that these are available because not everyone can get to church every Sunday and this is a way for people to still be able to worship.  Granted it is a lot more powerful to worship in the house of God than it is to sit in front of a computer.

Baby Girl Sleepin'

I am bored... waiting for Kyla to wake up from a nap and was looking at old pictures.  I found this one.  Ky used to fall asleep in her swing when she was little like this and I would leave her that way because it stretched out her neck muscle that needed stretched out from her torticollis.  Cut down on the amount of stretching we had to force her to do when she was awake!

Monday - New Schedule

I start my new schedule (24 hr work week) on Monday.  I can't wait.  First thing I plan to do is work with Kyla to get her to new REAL food.  She has no molar teeth yet, so she can't chew real good.  She will eat crackers, breads and that kind of thing but really wants nothing to do with real food - green beans, whatever we are having for dinner; chicken, that kind of thing.  She just throws it on the ground or pushes it off her tray - as to just play with it.  It's rather spendy feeding a 15 month old almost all baby food.  Had to take Kyla to the doctor yesterday and she has another ear infection.  She is so cute sitting there on the bench getting examined by the doctor - she's just this little bitty thing sitting there probably wondering what is going on.  She loves her Dr. and Dr. D loves her I think.  Kyla seems to - I like to think - be liked by people, I think it is because she is a special little girl, and she has a good personality.  I hope that will last into her younger years - I'm sure it will.  Dr. did say that we need to get her to drink at least 1 1/2 Pediasures/day because she needs to get more calories so she can stay well.  Of course my picky eater doesn't like to drink it straight so I have to hide it in her milk which she will drink, but drinks it slowly.  Err.... Daddy is having his tonsils out in two weeks and they might possibly have to re-do a previous sinus surgery he had - but he has a CT Scan Monday to determine that.  He had his first surgery when we were just engaged, so early 2006.  He is 32 so it's sort of a risky procedure - the tonsils - because heavy bleeding can occur, but the doctor thinks he will be fine.  I'm definitely ready for a healthy family again (and this doesn't just include my immediate family - my entire family is in the process of needing surgery, just had surgery or is just coming  back to work from being on Short Term Disability after surgery - not sure why it has all happened at the same time, but it definitely needs to go away) and to spend quality time with my girl.  She is my joy and what gives me happiness.  My exhausting joy - but she's still my joy.  :)

Looooveee

I’ve been noticing for a while now how much it seems like every song that is on the radio is about love.  Rock stations, hip hop/pop stations, country stations (actually I don’t listen to country – but my Mom has forced me to in the past when I was little), the list goes on and on.  Almost all songs relate to love stories.  It’s sickening in a way…what’s the deal; does every person on the planet have issues with love?  LOL.  It’s a little humorous, like are we just obsessed with love or something?  Today I heard a song on the radio of course about LOVE!  Not surprising.  So I listen to the lyrics of the song and am taken back a little.  Then I get back to work and look up the artist and am listening to more of her songs.  Again – all about love.  So here’s to my baby girl.  I wish you all the true love you deserve sometime in the future when you are all grown up and become a woman, meaning like 18+ years old J.  You deserve nothing but the best.

The Good News

Things aren't official yet but I have been offered and accepted to change my job from a FT job to a PT (working 24 hrs/week).  I just met with my manager yesterday and this change will take place within the next 2 weeks.  I'm super excited to be able to spend more time home with Kyla.  To me I feel like a Mom should be with her child, especially when they are young.  I guess this has to do with the fact that my Mom was home with my Sister and I until we were about 7 or 8 years old.  My Husband also grew up with either one of his Mom's home with him.  So in my eyes, that's the way I feel a family should be.  I have done the FT working Mom thing now for about 6 months or so and it is very hard.  I have adjusted but emotionally I don't think a Mom is supposed to be able to adjust to that - only seeing their kids for just a couple hours/day; it just doesn't feel right sending your child off to someone else everyday.  I understand that some people have no option than to work and have their kids at daycare, but if you can make it work being home with your kids, I believe that is the best thing to do - I'm so thankful that we have made adjustments to get us to a point where we can financially do it.  It's hard for sure.  For me personally I have so many things that I would like to be able to do with Kyla and will now have the opportunity to with this new schedule change.  My list of stuff - swimming in the backyard on hot summer days, going to the park to play on the playsets, helping Mom cook and bake, i want to make a garden and have kyla help me take care of it when she gets a little older, my first thing I would like to do is get back into having Kyla wear her prosthetic arm and start teaching her how to use the potty, doing fun crafty projects with her - help get her ready for preschool, etc.  I'm definately going to take advantage of this time I have with her and make the most of it.  I am also considering starting up school again.  It really stinks because I was about 2/3 of the way through my degree program and got all A's and one B and my work apparently decided they were no longer going to reimburse for that degree, so now I have to choose a new program and hope some of my credits will transfer.  I think it's important that I get this finished up though while I can...  and with Kyla's naps and the fact that I won't work Mondays and Fridays, I'll be able to stay up late and work on school stuff. 

So this was definatley the change that I was looking for.  I will be much happier, I think it will be great for Ky and will be good for our fam.

Thanksgiving 2010

This Thanksgiving was Kyla's first 'real' Thanksgiving because last year Mama was sick with Swine Flu and was locked away in the bedroom to be by myself for 7 days.  We only had one stop this year which was amazing because normally between my Husband and I's families we have 5.  With having the kid now, we just can't drag her all around town and it was so nice.  Greg's Step-Mom Linda made an awesome Thanksgiving dinner and we had a great day together.  Here are a few photos (thanks Lesly!).

Our fam:

 Terra, Melanie, Lesly and I:

Greg really excited it's Thanksgiving Day and he gets to eat :)

Trauma

So at random times thoughts pop into my head about things I might not have discussed on my blog yet.  I was thinking the other day and I remembered that I hadn't covered trauma during my pregnancy.  They say that they think ABS is caused from trauma during pregnancy.  I had two instances of what might be considered trauma, but at the time I didn't think much about it. 

The first one happened when I was just barely pregnant, like maybe 8 weeks or something.  It was before I started getting sick and that was pretty far into my 1st trimester.  My Husband and I had asked to babysit my niece for a bit and take her out to ride her bike.  I don't have a bike so my niece road her bike (she was 4 yrs old at the time and still had training wheels on) and my Husband rode his bike and Amber's brillant idea was to rollerblade.  I like rollerblading (my Husband and I used to cover some serious miles when we were dating and we had a lot of fun and it was a good workout).  Anyway so I am rollerblading and my niece decided that she wanted to hold my hand and ride her bike next to me.  So I reached over, grabbed her hand and soon after that she steered her bike into the side of me and I hit the pavement.  I landed kind of like flat on my back.  It was a hard enough hit that it ripped my brand new ski jacket that is made out of pretty tough material in the elbow.  I was fine but my Husband was pretty upset and I'm not sure why I was not smarter to begin with - I guess I thought it wasn't a huge deal I was pregnant and I would be fine rollerblading - I had never fallen before.  I didn't have any problems like bleeding or anything afterward so I just forgot about it.

The second occurance was when I was about 5 or 6 months pregnant and where we used to live we had some younger neighbors who we were friends with and I was outside talking to the neighbor guy and his dog who was a mastiff puppy (but was giant) was outside running around chasing our dogs.  Well this puppy was just that, a puppy that was clumsy and didn't watch where he was going and he was pretty wild when he played with our dogs - he just didn't realize how big he was.  So he was running after our dogs and I was talking to the neighbor guy and my dog ran past me and the Mastiff was running after her and ran right into my legs.  My legs came out from underneath me and somehow I was able to get my feet back under me so that I did not hit the ground.  The hit hurt though, because I'm not that big and this dog is giant and was running full speed when he hit me.  My toe got cut up and was bleeding pretty good from the dog's nails so I went inside and put a bandaid on it and laid down on the couch.  My stomach did hurt after this and for what I remember to be a couple hours.  Not horrible or anything, but kind of felt like cramping.  I cried a little because I was worried that I was going to like go into labor or something and told my Husband that if I did that she probably wouldn't make it because her lungs wouldn't have been fully developed by that point.  LOL, oh the joys or being prego and emotional. 

So there ya have it.  That was the only "trauma" I experienced during my pregnancy if it can even be classified as such.  Definately not like some of the other parents of children with ABS that I have talked to who have been in car accidents when they were pregnant, and that kind of thing.

Ain't it Funny...

how often times you stumble across the perfect thing at the perfect time.  If you've followed my blog, you'll understand what I'm saying.  This made me cry.

http://www.christianpost.com/article/20101108/man-without-limbsi-need-god-for-more-than-arms-legs/

Ministries|Mon, Nov. 08 2010 12:20 PM EDT

Man Without Limbs: I Need God for More than Arms, Legs

By Michelle A. Vu|Christian Post Reporter

A man born without limbs said he needed God for more than arms and legs at the Harvest event in Seattle on Sunday.

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(Photo: Harvest)

Nick Vujicic, a man born without arms or legs, speaks to Greg Laurie about how he can still be joyful in Christ despite his physical state, at the Seattle Harvest event on Sunday, November 7, 2010, in Seattle, Washington.

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(Photo: Harvest)

Some 15,000 people attended the Seattle Harvest event at the Key Arena on Sunday, November 7, 2010,in Seattle,Washington, o.

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Nick Vujicic, a Christian motivational speaker, said he gave his life to Jesus Christ at the age of 15 when he read the story of the blind man and Jesus in John 9. When people asked Jesus why the man was born blind, he said it is for the works of God to be revealed through him.

“He healed the physical body of the blind man (in John 9). But what I said to God is, ‘I don’t know what your plan is, but I trust you. I need you not just for arms and legs, [but] I need peace. I need forgiveness. I need purpose,” said Vujicic, president of the non-profit Life Without Limbs, to Greg Laurie at the Seattle Harvest event.

Vujicic, who was born with no arms or legs, shared his inspiring story to a crowd of 15,000 at the Key Arena in Seattle on Sunday. More than 93,000 people watched the event online and 1,692 accepted the invitation at the end of the night to commit their lives to Jesus.
Over the three days of Seattle Harvest 2010, 39,000 people attended in person, 162,717 watched the webcast, and 4,225 made decisions for Christ.

The Australian born motivational speaker, who has inspired thousands of people worldwide, shared that when God does not grant a person the miracle they prayed for (Vujicic had prayed for his arms and legs to miraculously grow), God can perform another kind of miracle.

“God can still use you to be a miracle for someone else to bring them to the truth and knowledge of Jesus Christ,” he said.

Earlier in the evening, Greg Laurie, lead pastor behind the Harvest Crusades and senior pastor of Harvest Christian Fellowship in Riverside, Calif., addressed the question of why there is suffering in the world. He said humans, in the broad sense, are responsible for the problems we face in the world today. The illnesses, disabilities, and death are all a result of sin, he said.

“The general tendency is to place all the blame for all of the problems and suffering of humanity on the shoulders of God,” said Laurie, who went on to state that everyone is born a sinner. “God gave us the ability to choose and our first parents, Adam and Eve, made the wrong choice in the Garden of Eden,” he said.

Vujicic, who has learned to overcome bitterness over his physical condition, left the crowd with a message on how to be happy. Some people say they are not going to be happy until they get married, have a job, save up money, or have more friends, said the author of the new book Life Without Limits.

But having those things will not necessarily make you happy, he said.

“It’s not about the outside. It is about being complete on the inside,” said Vujicic. “Because I have seen so many people complete on the outside but who don’t know the truth. It is the truth that sets you free and who the son sets free is free indeed.”
The Seattle event was the last Harvest crusade scheduled this year. The next Harvest event will be in Auckland, New Zealand, in June 2011.

Fall Fun

We took Ky and the dogs to the park by our house this past weekend.  Kyla went on the swings with Mommy and ran around the park.  She also helped cleanup leaves at our house in the afternoon...  but not really, she just attempted to eat them and thought it was so funny when Macy (one of our dogs) kept pulling the leaves out of her hand with her mouth.  Weekends are good days for Ky - she gets to spend the majority of her time lounging around in her PJ's.  She is not real happy about getting ready to go to daycare at around 6:30 in the morning everyday so on the weekends she has comfy days. 

SO SO SO Excited!

I am a very happy Mama right now!  I can't elaborate more until things are finalized but it is great news for me, my baby and my family.  I really was dreading today at the start, like sick to my stomach dreading it, but I tried to tell myself to stay positive and that it couldn't be that bad.  It wasn't, it was in fact great!  Excited for the future now, looking forward to what is ahead.  One things is for sure, I need to get me and my family back to church!  With all of the remodeling and busyness our summer entailed, we drifted away from church and it hasn't been good.  Definately need to get back and get to where we belong!!  I have been feeling lately like God is making my life pretty much miserable for a reason and it is because I have not been living the way he wants me to.  I prayed lastnight for today to go OK and it has been better than that.  There are some decisions to make, but last night, I was sitting at the computer trying to figure out budget for our family and trying to make the best decision for everyone involved and I just felt like we were in a no-win situation.  Well today has changed all that.  Things are going to be good.

BTW, my blog is allllll kinds of messed up.  I tried creating a .com website for this and I knew I shouldn't have.  Miss Doesn't Know Anything About Computers attempted to know something about computers and it didn't work out.  Not a surprise.  So I'm working on getting it working, but of course, isn't a big priority.  Ahhhh, today feels good.  :)

Hello!

So I know some people read this blog...  Um, well not a ton, but I do get blog hits from all over the world - mostly from the US but some from other countries.  Originally I created this blog for my baby, as I have stated before.  It is really for her to read and look at when she gets older.  I'm one of those weird people that wonders, what if I were to pass away some day?  My baby wouldn't even remember me!  I want her to know how much I love her, and I want her to see these stories of others who have already batteled the same issues I'm sure she will battle, to get inspiration from them and to inspire others herself.  I want her to know how special she is and be aware of the great opportunites she has in her future.  I want her to know that she can do anything and everything she wants and to not think of her situation as being a "disability."
So who out there other than my family reads this?  Do you yourself have ABS or know someone who does?  I am all for networking with others who have or are experiencing the same issues we are.  Contact me or comment and share your story.  Even if you have not been affected by ABS, feel free to get in touch with me to ask questions or share your opinions or whatever it may be.  I know only a handful of people who have children with ABS and all of them do not live in the same town as us.  I get excited when I meet someone who has this, or knows someone who does.  I finally saw someone in my town who was missing just their hand and the amputation looked to be caused by ABS.  It's neat to know others out there who you can connect with...  so, don't be shy.  I would love to hear from you.  Thanks for reading.  :)

Just Something Funny

I made tacos for dinner last night and had Kyla in her high chair, trying to get her to eat some of it.  I gave her her bottle that had PediSure in it because she has really not been feeling well since she got her flu shot on Tuesday morning.  My poor girl looked miserable but still smiled every now and then.  Anyway she was playing around and not wanting to eat and she quirted herself in the face with her bottle.  Cracked me up and we were able to get a picture in time.  She is so funny, makes me laugh so much everyday, especially now that she is getting older and has more personality.  I had to share.

Well Check & Shots at Dr. D's

Just returned from Dr. Del Los Reyes' office for a well check and vaccinations appt for Kyla.  Before I forget her stats I wanted to record them down real quick, here they are: 

(3 days short of 14 mnths old)
31" long
20 lbs.
15% for weight
75% for height

Dr. D recommended that we give Kyla PediSure because she weighs so little - we told her about our struggles with getting her to eat real food; how she prefers baby food and will only eat a couple bites of regular food, so she suggested we supplement with these.  Cracks me up.  Dad said that if she ain't my kid then he doesn't know who is.  True.

Dr. D also noticed how much of a busy-body Kyla is, she said "wow, she just goes, goes goes!"  She said she is very active for her age and that is probably why she weighs so little.  Thank the Lord for someone confirming to me that our child is ACTIVE!  I thought maybe they are all like this.  If I had three that are like her all at the same time, I'd probably die after a few weeks of being their sole provider 24/7.  :)  Love the girl none-the-less.  Dr. D also noticed she has an attitude and told us to be very consistent in the discipline and ways to distract her into thinking that she is getting her way when really she isn't - I'm learning.

Good Description of ABS

Halloween 2010

Here's my girl in her bunny rabbit outfit.  She was really upset at first because she kept pulling her hat off and we were making her keep it on.  She also threw a fit over me trying to paint her nose on her.  My little drama queen.

Check Out my Pretty Baby

Went to the Country Merchantile for some pumpkin patch photos.  Mom snapped this.  

 

Video:  http://www.facebook.com/photo.php?fbid=444852754129&set=a.444816374129.243492.726449129#!/video/video.php?v=1443843660684

A Few Camping Photos

Not that I have a bunch of time or anything (whew, just got the kid fed, bathed, bottle, and to bed...  then had some dinner and now I'm doing this)...and trust me, this isn't too important, but as promised here it is - A few camping photos.

Another One Handed Model

Glamorous handless model becomes overnight celebrity after posing in bra for disability awareness advert

By Daily Mail Reporter
Last updated at 2:05 PM on 20th October 2010

• Comments (142)
• Add to My Stories

Blonde ambition: Tanja Kiewitz models in a plunging black bra for CAP48's advertising campaign

A handless model in Belgium who posed topless for as part of a campaign to raise awareness of disability issues has become an overnight celebrity after being inundated with interview requests from all over Europe.
Smiling directly at the camera, glamorous 35-year old Tanja Kiewitz, posed for the shoot in a plunging black bra which adorned an advert which read: 'look me in the eyes... I said the eyes'.
The shoot formed part of a newspaper advertising campaign by CAP48, a non-profit organisation which works to highlight disability issues across France and Belgium.
The advert has been so successful that the charity has raised more than €4million from an annual telethon – 10 per cent more than the previous year.
According to the newspaper Global Post Kiewitz has become an overnight star ever since the photograph appeared late last month with magazines and TV crews all across Europe clambering to interview the graphic designer.
'There’s been a huge reaction,' Kiewitz told the newspaper.
'I’ve been besieged on Facebook. Mostly the reactions have been great, really positive feedback. I’ve got journalists from around the world calling; it’s been a bit crazy.'


Read more: http://www.dailymail.co.uk/femail/article-1321945/Handless-model-Tanja-Kiewitz-posing-bra-handicap-awareness-advert.html?ito=feeds-newsxml#ixzz13U0MMQx9

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It is interesting for me to read through comments of people's reaction to Tanja's photo.  It gives me a glimpse of what people probably think of Kyla when they see her.  Some people are extremely rude and say that this is distasteful or repulsive.  Some people totally support Tanja and say they wish they had as much courage as she does.  These people who are saying they don't want to look at her because of her disability should be thankful they themselves do not have a disability.  What a shallow human being to say something like that about someone.  I was reading through the comments and Kelly Knox (see my early posts about Kelly - she is a British model who was born with one hand) went on there and posted her comments, basically defending Tanja and supporting her.  Good job Kelly.  BTW, Kelly's comments on prosthetics, I don't agree with.  I think that the future of prosthetics are very promising (because of the war - the doctors in Seattle told us this) and therefore I do not think they are "fake, ugly and their purpose is to hide the disability."  If a prosthetic can aid someone in their everyday life and help make tasks easier, then I am all for them.

The reason I found this article is because my babysitter's boyfriend said he was watching the Victoria's Secret fashion show on tv and saw a model on there with only one arm and he told my Husband he was like "that girl has a nub too!"  My Husband calls Kyla's arm her "nub."  I don't like the term, but that's what he uses.  I prefer "Little Arm."  (Every parent of a child with a little arm has their own name for their arms.  The two girls up in Seattle's arms are referred to as "Armie" and "Closed Hand,"  -- it's just something that you do.)  My Husband was like "oh, ya, that's Kelly Knox..."  So I went online to find photos.  I haven't actually found them yet, because I can't really do searches on VS models here at work, but I did find this.  I'm wondering if it was actually Kelly Knox he saw or Tanja.  I will have to do more searching at home, but in the meantime, thought I would post this.

Update

I am bored at work so figured I would make another post.  Unfortunately my work disabled the ability for photos to be uploaded to blogger (retarded), and we do not get home internet hooked up until Monday so it'll be a while before I post camping and pumpkin patch photos.  In the meantime I figured I would give an update on what Kyla has been doing. 
Kyla's new favorite saying is "ugh oh!"  Everytime she drops something or falls, she says "ugh oh!"  Or for no reason at all.  This morning she woke up and I think her first noise was "ugh oh!"  She is so cute....  Yesterday morning she must've said it like 20 times before leaving to go to daycare.  We are now the parents of the annoying little kid that can only say one word and says it over and over.  LOL, before I was a parent I would think that about other kids that could only say one word.  HA...things change once you have your own and everything they do becomes cute.  When Ky is naked with just her diaper on is the best, she's this tiny little girl with this little bitty body walking around the house, getting into EVERYTHING.  She keeps me busy for sure.  Exhausts me because our house isn't all put away yet so it's not kid proof so I'm stuck watching her pretty much 24/7 and pulling items out of her mouth constantly.  I'm wanting to find out when that stage stops - what age do they learn that not everything is edible?  I hope it's soon!!!  I think Ky will most likely be skinny - she might just barely be 20 lbs. (pending her next Dr. appointment for a weight check) and she has been around the same weight for the past 5 months or so and has been in size 3 diaper for what seems like forever.  I know 6 month old babies who weigh more than she does.  She's tall and skinny...has these really long legs, a tiny little body and a big head.  LOL, she gets the big head from Daddy.  :)

Kyla is also starting to get the kissing thing down.  I kiss her A LOT, which I don't think she is a big fan of but that doesn't mean it's going to change anything (she is my kid and I will kiss her as much as I want to - I only see her for a few hours a day except for weekends!)  Ky will walk around and do lip smacking noises but when I try to give her a kiss she doesn't know what to do - so I'll kiss her and after I kiss her then she will smack her lips.  It's a little delayed, but it still counts.  Not much beats baby kisses.  Anyway that is the update for today.  Oh, I also ordered her Halloween outfit a few days ago, I'm hoping she won't protest wearing it.  We'll see...

Medications I Took During My Pregnancy

While I was pregnant with Kyla, I took some medications that might be noteworthy to remember, if someday in the future they come out with findings on what causes ABS.

I have a heart condition called Mitral Valve Prolapse (MVP). It is not something I knew about until about the age of 23 or so. I ended up in the ER two different times until finally figuring out what was wrong with my heart. I believe it was my second echo that the cardiologist noticed that one valve in my heart is too large and when my heart pumps this valve doesn't function correctly and is floppy; causing me to have heart palpitations. When I first found out, I didn't do anything about it, but after a while it got to the point where I had no energy at all - even doing dishes exhausted me, which was really weird, so I went back to my cardiologist and he put me on Zebeta (bisoprolol fumarate) http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000927, which greatly improved my symptoms.

Once I got pregnant, I called my soon to be OB-GYN doctor to make an appointment to see him. Since they won't let you go in for your first appointment until you are like 8 weeks pregnant (I think because many women miscarry the first couple weeks), I asked the ladies to check with the doctor to make sure that it was okay for me to continue taking my heart meds. The doctor personally called me back and told me that it was fine. So I continued to take it. Later when I finally met with my doctor in his office, he said he would get in touch with my cardiologist and double check that it was safe, which he did and my cardiologist said it was fine. When I was about 6 months pregnant my symptoms seemed to disappear and had for some time, so I just stopped taking the Zebeta. The doctors had told me that I could continue up until a few days before I was to deliver, but I stopped several months before that.

A month or so ago I had my yearly echo appointment with my cardiologist and I told him what had happened with Kyla and her ABS and asked if he thought that could've been caused from the Zebeta and he said no, it is one of the safest blood pressure medications you can take. The only thing I can link together is that I know for sure this medication caused my blood pressure to drop. One time during a doctors appointment for a cold the nurse took my blood pressure and it was very low and I was like "is that OK?" She said yes, as long as you feel OK - which I didn't, I felt real light-headed all the time, especially when I would stand up. It could be possible that my blood pressure was so low that maybe that affected Kyla's development? I have no idea, just putting the questions that have run through my head down on paper.

After I had Kyla, I continued to feel fine and still do and have not taken this medication since stopped at 6 months gestation - I do not really need it. I learned that pregnancy can change the makeup of your heart (since the blood volume of a pregnant woman increases while carrying a child). My cardiologist did tell me before I got pregnant that most women who have MVP feel better when they are pregnant, so this was the case for me as well and I have continued to feel fine ever since.

Other medications I took during my pregnancy but only in my 3rd trimester (after Kyla had already finished developing and I was told were safe to take by my Asthma doctor) (for my Asthma that randomly developed and got pretty bad - apparently caused from hormones from being pregnant) were Singulair, Xopenex HFA and Pulmicort Flexhaler. These medications kept me out of the ER (except for once) for not being able to breathe! Soon after Kyla was born, I was online on one of the ABS websites and I volunteered to be a part of a research study through Harvard (I believe it was) who was doing something with research on ABS and wanted to know information from those affected (or mother's of), but I never heard back - weird.

Kyla Goes Camping!

This is a special post for me, as it was Kyla's first camping trip. We went to Cape Lookout State Park in Oregon Sunday thru Thursday (Oct 3 - 7). My family has been camping at Cape Lookout since before I can remember. I was trying to think of how many times I have been camping there, and it's got to be like 23+ times. I LOVE the place. It feels like a second home to me and is a place where I have lots of memories. So it was really special that her first time camping was at a place that I love so much and have been going to since before I can remember.

Instead of tent camping, we rented a yurt (a circular building made out of wood and fabric that had a heater - important for camping with a baby). It was nice, but there were tons of spiders in this place so I was a little creeped out and we basically only stayed inside to sleep. One word to sum up Kyla's camping experience was d-i-r-t-y! Good thing Mom packed her tons of clothes so she stayed clean and dry for the most part. She was a little adventurer exploring everything from sticks, rocks, leaves, dirt, camp fire (we had to watch her close with this one), sand, birds, chipmunks, etc. etc. We took her down to the ocean and she chased after the waves with Daddy. She fell a couple times and got soaking wet. Kyla seems to take after Mom and appears to love campfire! She would just sit there and stare into it. We went to Cannon Beach and ate at Mo's and went to the same spot where we got married 4 years ago (our anniversary was yesterday, Oct 7th) and took a family picture. We hung out in Cannon Beach for a few hours and went to Ecola State Park - the drive to get to this park is georgeous. I love it... we got out of the car and tried to take pictures of Kyla walking down the road, but because my camera is so crappy, it didn't come close to capturing the beauty of this place - just one more reason why someday soon I intend to purchase my Nikon D90 - hint, hint, Daddy (if you ever read this...). It has huge trees that have grown together over the top of this windy barely two car road. If you ever get the chance to go to Cannon Beach, definately have to go down this road. The park at the top is surprisingly ugly compared to the drive, but does have a nice view over-looking the ocean.

The rest of the trip we spent going on nature walks - I wish we had a kid backpack for Kyla so that we could've gone further. I have never been on a long nature walk at Cape Lookout and would love to do that sometime. It is a little creepy but as long as Daddy is carrying his gun, I'm OK. Last year when we went to Cape Lookout several small black bears crossed the street when we were driving into the park, so you never know what you are going to run into. One thing to note in this post is that every night we were there we got almost attacked by racoons. I say attacked because these guys traveled in packs. I think at one point our neighbors counted 9 and they swarmed us - they didn't care at all that we were there, they continued to try to get into our food even with us throwing stuff at them, yelling, shining our flash lights at them, whatever, they were bold! They would hiss at us and were big! We basically went to bed early each night because there weren't a lot of people up there camping so it was like us vs. packs of hungry racoons.... which was creepy, like constantly looking all around you to make sure they weren't creeping up on you - not fun! :) Also forgot to mention that Ky went on a tour of the Tillamook Cheese Factory! She basically just had fun walking all around the place - she is a walker now.... the girl just goes and goes.

Greg and I also discovered our future job when we retire - camp hosts! So we buy an RV, our diesel truck and camp 24/7 for our job at Cape Lookout for free... we talked to the hosts (there is like probably 4 of them and they rotate days that they are on duty). I reallllllly someday want to have like a second home or just live on the coast. Someday maybe it will happen..... I told Greg I just need to get myself a farmer Tillamook man so that I can live the simple life. What a beautiful place that would be to live. Greg laughed and said that I would get bored so fast. I don't think so though... heck I grew up in Benton City playing in the sage brush and riding my bike over rattlesnakes. Hello........... Tillamook man, here I come! (just kidding...).

Last note of the trip - Greg talked to the camp ranger yesterday morning who said that they give Cape Lookout another 10 years. He said they lose 100 - 150 feet of beach every winter and put tons of money into the park after every winter to try to build the dunes back up again. This is pretty disappointing knowing that it might soon be gone. Definately a reason to make sure we get up there at least once a year from now on. Kyla needs to have good childhood memories there just like I do! Pictures to come.

With my baby biscuits over the weekend. She wrinkles her nose now when she smiles - so cute! I love how the light is shining right on her in this picture...she is an angel. :)

PBS Kids Character with ABS

We were out having dinner a week or so ago and Kyla had started to get fussy so my Husband took her over to the fish tank that was in the restaurant to check out the fish for a bit. There were two little girls also looking at the fish and they turned around and saw Kyla's arm and asked what had happened and the little girl who was 3 says "she looks like SpongeBob's friend." My Husband was just like "oh really?," not having any idea who the girl was talking about and just made conversation with the girl and explained to them what had happened. Of course they were curious about it for like 2 minutes and then all focus was on the fish. :)

After the little girl said this, I was curious who she was talking about and had remembered reading something about a cartoon character who had ABS...I couldn't remember where I had seen this, but I finally found one that does - his name is Andy and he is on Maya & Miguel which is on PBS Kids. Andy has an arm that looks exactly like Kyla's, but it is his right arm rather than left.

It's pretty cute, a lot of kids have gone to the website and asked "Andy" about his arm and how he plays sports without his other hand, how he handles people looking differently at him, etc. I've never seen this show, but definately it will be something we'll eventually show to Kyla. Awesome awareness for ABS!

Links:

http://pbskids.org/mayaandmiguel/english/friends/andy/flash.html
http://pbskids.org/mayaandmiguel/english/friends/andy/faq/index.html

Info taken from Wikipedia about the Character:

Andy Arlington: A 10-year-old English-American boy who was born with only one arm and is Miguel's friend. Often seen in the background with Miguel and Theo, he likes to play soccer, basketball, and baseball. Andy comes from a wealthy family. He does not consider himself to be better than anyone else, though. He has a crush on a Mexican girl named Esperanza, but was nervous about speaking with her as he cannot speak Spanish well and she is not fluent in English. Besides meeting and being nervous about meeting Esperanza, it is not known whether or not they are still together. Voiced by Jeannie Elias.

Practice

Using her prosthetic to carry her bouncy ball around the living room.

Me & My One-Year Old!

"The most precious and valuable jewels you'll ever have around your neck are the arms of your child."

I loved this saying, because Kyla has just started wrapping her arms around us when she gets picked up and it is the best feeling in the world. No way to describe it. She feels too good to hold.

Here is a photo of her and I that was snapped last night. She is a big one years old now and so silly! I was tossing her up and down and getting her to laugh for the pictures. :)

Chosen One

But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed. 1 Peter 4:13

Biblical Reasonings

Just last week I went on the internet to the online Bible to look up disability and try to find biblical stories or verses that would be good to lean on in the future. I tried searching disability, disabled, etc. and found nothing. I know the Bible is full of stories about people who were healed by God and so I found it odd that my search returned nothing. I was at work so decided just to look through the reference pages in my Bible later on. Last night a lady I met in Seattle who has a daughter that is just like Kyla (has a full arm amputation, left arm, below the elbow) posted her daughter's story and this is what she said:



God reminded me of all the people Jesus healed in the Bible; they all had mothers who had probably cried out to God for the healing of their children. Their imperfections brought God glory when they were healed.

“As he went along, he saw a blind man from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the work of God might be displayed in his life.” John 9:1-3



I love this - this tells me that Kyla's arm is not because Kyla deserved this, or that her arm was a result of something bad her Father or I did, but that she was created that way so that God could display his work through her life. Very cool!

Another great verse she shared was Psalm 139.

To My Baby

Kyla Rae,

You are 10 months now and such a busy body. You are a handful and are into everything you shouldn't be. I could buy you a million "toys" and you would choose anything and everything that is not meant to be a toy to play with, or get into, or stick into your mouth. You are becoming Miss Independent and throw a fit everytime I change your diaper, change your clothes or feed you myself. You are growing up way too fast. I love you with all of my heart and could have done nothing better in my life than had you as my daughter.

On the days that are such a struggle and it seems nothing is going right for me, coming home to you is what I look forward the most because you are almost always the reason for my first real smile and first real laugh of the day.

Love you my sweet girl.

Mommy

This is fun to chew!





















Holding my hands for the first time! :)

First Fitting

We just returned this afternoon from Seattle after Kyla's first fitting appointment. Everything went great but there were a few little tweeks Lindsay (Children's Hospital Prosthetics) had to make to make things more comfortable for Kyla. Her poor little arm was turning purple and bright red, because the socket was so tight :( Lindsay is going to make a little more room for her arm and we will go back up in 3 weeks to get the finished prosthetic.

It was so strange seeing her with an arm. It was different, but good. I think she looks cute with it on. Here are some pics. She likes to chew on the long velcrow strap, but this will be cut shorter so that she won't just think it's a chew toy in the future.

We took Daddy to The Cheesecake Factory on Pike in Seattle for dinner for his first Father's Day. Such a beautiful restaurant and good food. I always try to plan something on our trips to the Hospital just to make sure that they are somewhat fun and not just another "task" to add to our list of things to do.

By the way - I had stated in earlier posts that each time we go to Children's I never see any sick kids or kids like Kyla. Today made me change that statement. We saw probably 5 or 6 kids that had cancer or something (walking around with bald heads and feeding tubes going down their nose or in wheelchairs, pale and bald heads). I can't even imagine having a child that was sick like that. Thank God our child's issue is so very mild in comparison.

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).