Halloween Party

Last night we went to ECI's (Early Childhood Intervention) fall carnival. The kids had a blast, well Hunter did anyhow. They were really cute, Hunter was a Policeman (and felt the need to tell everyone) and Ella was a butterfly. Ella's friend Olivia was there too, (Ella is 5 days older than Olivia) she was SO cute in her Princess Laya so of course we had to take pictures of the two of them!

This coming Friday we have a Halloween carnival for Hunter's school, and then on Saturday we have one on base!

New Shoes

Ella had to get new shoes this past week. Her occupational therapists came to visit on Wednesday and saw Ella pull up to standing for the first time and noticed that she pronates with her feet, (they turn in.) So, she wanted me to get her some hard athletic shoes. I had to go to 4 different stores to find shoes that fit her unaturally tiny feet!!! One guy measured her feet and it was just over the line for a size 2 (which fits about a 3-6 month old) so she had to wear a size 3, BUT the girl has some fat feet, so we had to find shoes in a size 3 wide. Anyhow they are really cute and don't seem to slow her down at all, she doesn't mind them just chews on them every once in a while. They make her legs look longer so that's a plus : ) but they make her look like such a big girl, she is still supposed to be my little baby!!!!!!!!!!

I'm back, kind of

I've been tagged by Laurie at The Incredible Adventures of Ian and Chase, I'm supposed to write what I have learned from Ella and what my wishes for her are. Wow. I'm not sure that it is actually possible to put all of my thoughts into words but I'll try. What I have learned from Ella- -I have learned how to love absolutely unconditionally, I love that little girl more than I can ever express. -I have learned far more medical things than I ever cared to know. -I have learned that I am stronger than I thought. -I have learned that strangers can be very compassionate, but that people can also say some intentionally stupid things. It's hard to think of all the things I have learned from her because it is hard to remember life before her. Things I wish for Ella.... -I want her to know that she can accomplish great things. -I wish that no one would ever hurt her. -I don't want her to feel "different." -I hope that she knows how incredibly proud we are of her. -I hope that she continues to be happy and healthy. -My biggest wish is that she knows and feels every moment of her life how very much she is loved. Okay, that's enough of that, I could go on but my time on the computer is limited!! Our computer is up and running but acting very strange so I am not sure how long it will hold up! Anyhow, I tried to roll Ella's hair this past week,(it's back to driving my crazy!!!) I was trying to just get it to stay out of her face, so here is the pictures from that : ) Here is the aftermath, pretty funny. It went completely flat about 5 minutes after this picture. Oh well.

H

Here are a few pics of the most handsome boy in the world!

My Lil Pumpkins

We had a fun day today. We met our friends on base, they were having a fire truck/fire safty show in front of the BX and then they had a little pumpkin patch set up in front of the Commisary. Each of the kids got a pumpkin and of course we took tons of pictures so here they are!







My future Fireman????

Sorry!!

I am bummed that I am not able to do the 31 for 21. My computer is having some sort of major malfunction and we are unable to get on the web. So, I will try to post when I can from here, my friend Jennifer's computer.

Poopy Day

Poor Hunter has had a bad belly all day : ( We found that out after he had to go potty 4 times at the mall while we were shopping for shorts for him. Yes, that's right shorts. It is October and still in the 90's here and you wouldn't believe how hard it is to find shorts. Hunter's buttons on his shorts are popping open and the shorts he had on yesterday he said were hurting his belly. Anyhow, we did find 2 pair but we are hoping that fall actually comes to Texas and the weather cools down. I HATE HEAT!!! Anyhow, Ella has had a good day and is trying desperatly to pull up on the couch, unfortunatly I think they are still just to tall for her but she is not giving up!!! While out and about today we met a 3 year old little boy with Down syndrome. I am still shocked everytime I see a small child with DS because I swear before Ella I never noticed any. Oh yeah, Hunter got in trouble at school yesterday for calling his snack a "poopy butt," I have to say that I laughed when the teacher told me that. She said "Hunter said a bad word today." then hesitated and I feared the worst!! But when she said poopy butt I am afraid that I laughed. If she would have known Hunter a year ago she would have heard much worse!!! That's all I got for today!

Day 5

I will spare you all and write a short blog today!! (Really we are at friends house playing cards so I am trying to type this quickly!) Yesterday I went with my friend Jennifer to get her daughter's hair cut, ( I was there for moral support cause she was cutting a lot of her hair off : )!!!) Anyhow, I had both the kids with me because Chris had to work late. One of the ladies that worked there said "are those your kids?" Pointing to Hunter and Ella, of course I said yes. She said "oh your SON really looks like you!" I'm sure that she did not mean to offend me but it just hit me the wrong way. To me it seemed to point out specifically Ella's DS features and to point out that they do not look like me. I happen to think that both of my kids look like me, perhaps I am just sensitive. Oh well, that's it for today.

A story from my mom

My mom said that I have heard this story enough times that I should just write it, so here goes......

On Wednesday, August 30th at around 2pm I called my mom and told her not to panic but that I was in the hospital having contractions, (I was 34 weeks pregnant and the week before had had a "routine" ultrasound and the estimated that the baby was 3lbs,) but not to worry because the OBGYN said "No baby today!" and that they thought I was just dehydrated so they gave me an IV and also that they had checked me and I wasn't dialating.

About an hour later I called her back and said, okay now they are starting some medication to stop the contrations, but still don't worry. Probably about 3 or 4 phone calls and a couple of different medications later, I made my husband call and tell my mom that they were taking me in for a C-section, of course she wanted to talk to me and of course I was sobbing and we were so scared for this tiny premature baby.

Once I was settled in to the recovery room and Chris came back from being in the nursery with Ella I had to call my mom and give her the great news, the baby was 5lbs 10ozs and was only needing the help of an oxygen hood, no tubes!!! She had already changed her ticket so that she would be arriving on Friday morning. (I was planning to have a repeat C-section the 1st week of October and my mom had already bought her ticket so that she could be here to stay with Hunter.) We were all so relieved that Ella was doing so great. Then the attending pediatrician came in. He told us that he was going to test Ella for Trisomy 21, I asked him if that was just because my triple screen had come back at a 1 in 201 and he said he had never seen my records. My heart sank, the OB pitched in with "yeah I saw it too." Um, hello? Saw what?? Anyhow, I of course called my mom sobbing again, told her that they thought my baby had Down syndrome, I'm pretty sure though my memory is slightly foggy but I think she said "NO."

A while later I finally got to go to the nursery to see my baby. I don't know what I expected to see, I had in my mind an image of an adult with Down syndrome. I took one look of my baby, mind you I was laying flat recovering from my C-section and she was still in an oxygen hood so I had a sideways view of the side of her face. I immediatly said "she doesn't have IT." I was so excited, they were wrong!! She was just the tiniest most beautiful baby I had ever seen. My mom always says that she looked exactly like a doll, and she did. Ella did not have the scruntchy features of a newborn, everything was perfectly perportioned down to her little button nose and tiny little pursed lips. As soon as I got back to my room I called mom "she doesn't have it!!!" My mom was so releived, she said if she had it you would know, mom's have instinct.

A couple more hours go by and I went back down to nursery and go to hold her for the first time. Ella yawned and stretched and something in her facial expressions hit me like a ton of bricks, I turned to my husband, "Oh God, she has it." So again I call my mom "she has it," I told her flatly. It was so late at this point and my dear sweet husband was snoring in the recliner next to me, my mom said "I know you are not going to sleep tonight, and I am not going to either. So, call me whenever you want." I know Fairbanks, Alaska is far away, but it has never felt further. I don't know how many times I called my mom that night, a lot, and I think everyother call was "she has it," " no she doesn't have it, she can't" Denial is such a strong emotion. Thursday night was awful for me. My mom was on a plane somewhere and again my sweet husband was snoring. Ella had failed her hearing tests so I spent most of the night ( she was able to spend the night with me in her little basinet) testing her hearing on my own. I would put the speaker box for the TV next to her head and watch for the slightest movement and claim that she could hear, I would clap, whistle anything. Really she didn't respond. Surly if she had Down syndrome I wouldn't be delivered a double whammy and have a deaf child as well. Anyhow, while all this was going on my mom was having an experience of her own......

From the moment I called my mom and told her that they thought Ella had DS she became "almost manic," as she puts it. She began calling everyone she knows. She was frantic and 3900 miles away. She did not sleep or eat. She got on the plane in Fairbanks, Alaska at around 3pm on Thursday. She had a couple of hours layover in Seattle. She said that during this time she was angry with her brother Ken, (My uncle Kenny died in 1992 of AIDS, he and I were very close and my mom has always thought of him watching out for me,) and was thinking "how could you let this happen to her?" She decided that she needed to go get something to eat, I believe she got some soup and found a table to sit at. She sat down and noticed a little girl with blonde pigtails. She sat there staring at her and began crying. She noticed the little girls parents looking at her and knew she had to talk to them. Their little girl, Claudia, has Down syndrome. My mom told them about my sitituation and that the doctors think that Ella has Down syndrome. That couple was so wonderful to my mother. Claudia's mom told my mom that she cried for 90 days straight when she found out her baby had Down syndrome, that she was devistated. But, she gave my mom hope. She told her all about state early childhood intervention programs, and all the therapies. She told her that Claudia had a PDA in her heart (which Ella ended up having) but that it was just something they were watching. Claudia wasn't walking yet, she was 2 years old. Mom said she was just the cutest thing. She had blonde pigtails and was sitting there eating french fries and drinking chocolate milk. They had to run to catch their plane, but Claudia's mom, Karen, gave my mom a hug, gave her their phone number and email addresses, and then Claudia waved goodbye and blew my mom a kiss. My mom said that in that moment she knew that Ella had Down syndrome and that even more importantly she knew it was going to be okay, she was at peace. It was as if because of her anger at my uncle he showed her to Claudia, and showed her it would be okay. It was certainly no coincedence.

Of course it didn't stop days of crying, hysterically at times, from the both of us. My mom told me that she wasn't just worried about Ella she was really worried about me. My mom stayed with me for 7 weeks. If not for her I don't know how we would have made it. Chris was supposed to be deploying that week that Ella was born (though because of all the surprises, he did not end up having to go, but he did have to go back to work.) Hunter was a mess, he was very angry at me for abandoning him and I'm sure that me being a wreck wasn't helping him, he was yelling at me hitting and kicking it was awful. I was so afraid he would never be the same, I know I just kept saying "I want my old life back." and I did so badly. Finally after being home for a few days and getting the official diagnosis, I ended up going in and getting some pretty heavy medication for depression and also sleep medication, I had not slept in 5 days. So, my mom would sit up with Ella from midnight till 6am, put her down and then I would usually get up with her at around 9am. I'm not really sure what would have happened if I had not been able to sleep, and I don't really want to think about it. My mom says that while her and Ella were up partying as we liked to call it she would have Ella on her chest and sing to her and Ella would look up at her and hum. She says that looking up at her like that reminded her so much of me as a baby, even looked like me. My mom is such an important part of Ella's life and we have added up all of the time that she has spent here and us up there and she has actually spent almost 5 months with her, which is pretty incredible.

My wish is that we could meet people facing the news of Down syndrome and be like that family was to my mom. Comforting. When Ella was first diagnosed I could never imagine her doing "normal" baby stuff. I think just being able to see an actual child with DS and seeing how truly remarkable they are would lift people out of the fog they seem to be in. We are so thankful for Karen and her kindness and the information she gave my mom!!!

Day 3

So, I just got done reading my blogging friend, Laurie's, post. She wrote about her "initiation to the Ds club." the story of Chase and how she found out he had Down syndrome. You can read her story here http://ianandchase.blogspot.com/2007/10/beginning.html

While reading her story I found tears just streaming down my face. It's weird how reading her story I was immediately taken back to Ella's birth and can feel all of the pain, her words could have come straight from my mouth. It is amazing to me how so many of our stories are the same, it really is some club that we are in isn't it?

Laurie talked about initially feeling sad about not having her "perfect family" and mourning the loss of the little boy she dreamed of. I remember when I found out that Ella was going to be a girl and dreaming about all the things that entails, will she be a tomboy like me? or will she be super girly? will we be as close as my mom and me and will I get to be a huge part of her children's lives? I've come to terms with the fact that some things won't happen, I think I am done mourning the loss of the "daughter of my dreams", the future grandchildren etc. I have realized that I got the greatest blessing ever and that Ella is so much more than I could have dreamed of. I really do mean that. Ella is just so amazing and now I know that my life would not have been complete without her. I still have my worries, believe me. I am so scared of the future for her and tend to try really hard to not let my mind go there. Mostly I worry about her being treated unfairly and her being hurt. I will say that I don't worry about her being happy and most of all loved. That girl has SO many cheerleaders, and so many who just love her for her.

Okay now I am done with the emotional stuff, that's all I can take. BIG NEWS....... ELLA PULLED TO STANDING IN HER CRIB TODAY!!! I can not even tell you how excited I was!!! She was supposed to be taking a nap and I just peaked in to make sure she was still asleep because her brother was being very loud and there she was sitting on one knee with one leg sticking out to the side, she saw me pulled up with her arms and there she was standing like a big girl!!! And as always she was quite pleased with herself, and she should be!!!!!!!!!!!

Good day!

Let me start by saying that the little icon that lets me pick the color of my text is gone, what's up with that?

Anyhow, today is day 2 in the Get it Down; 31 for 21, and it has been a good day! Ella had therapy today and her occupational therapist brought over a new toy for Ella to play on. I don't know if it is really a toy but it's something to help her pull herself up on. She is doing so awesome!! Mrs. Deena asked me today if I wanted to know what age range Ella was placed at, basically where she falls on a "typical" scale. Ella placed in the 9 to 12 month range in her social development, cognitive ablities and speech and in the 6 to 8 months for her gross motor skills and 6 to 9 months for her fine motor skills. All and all the is quite awesome!!! I'm not too concerned about her being behind in the motor skills, cause once she gets them she has them. I am super excited about her being at her age group for the social, cognitive and speech because those are constantly being built on so it is great that she is not behind!!!!!

Chris found out that he met all of his requirements on time and has offically graduated as of Sept 30th and now has his bachelors degree in criminal justice. YAY!!! Plus he talked to a Lieutenant at the Spokane Police Department and will be flying up there next week to take a written test. (For those of you who don't know, we are getting out of the Air Force in April and are moving to Spokane, WA as they have the best resources for Ella. We HAVE to have a job as soon as Chris gets out so we don't have a break in health insurance. We have been told that if we have a break in insurance that any future insurance can choose to not accept Ella because of a pre-existing condition. So, Chris going up to test is really exciting!!!) Anyhow, that's about it for today!!!

31 for 21

Okay, so I am attempting to take part in this - Get It Down; 31 for 21. October is Down syndrome awarness month and Tricia at Unringing the Bell, http://unringingthebell.typepad.com/my_weblog/ is challenging us all to post everyday on our blog all 31 days of October. We don't have to write about anything speciafically and somedays she may come up with themes or questions, so bear with me as I may run out of things to say : )

I'll start with an update.... Ella is now 13 months old, can you believe it???? We have been busy attending all of those wonderful checkups and tests that are done on a yearly basis for children with Down syndrome. Today we went up to Oklahoma City to the eye doctor, which takes over 2 hours each way to drive to, for a 5 minute appointment. Ella's eyes are great. (While we were sitting in there my husband and I were remembering a year ago when we went up there. Ella was 3 weeks old, all of about 6lbs and we had no clue what was going to happen. We had read about eye problems that DS children could have. Needless to say Ella was fine, but I remember that that appt was the first "good" appointment we had had. Unless of course you count the pediatrician telling us that Ella had the "good kind of hole in her heart." GOOD HOLE IN HEART what in the world???? Of course now that we know that too, it was the good kind and closed all on it's own. But really, I think that doctors should be more careful with their words when talking to clueless devistated parents.) ANYHOW, Ella's therapy evaluations went wonderfully and she met ALL of her goals that we had set for her and then some. The speech therapist came and met Ella for the first time and said that she is doing great, she came for a 2nd time this past week and fed her lunch to watch how she used her mouth and she said that Ella was doing everything how she is supposed to and uses her tongue appropriatly!! Whew!

The thyroid thing, well that is a headache. The end of June Ella's thyroid tested at a 5.02 which is just outside of the "norm" so we were referred to an endriconologist. So up to Oklahoma City we went 2 weeks ago and basically he said that he wasn't worried about it but since it had been 3 months go ahead and retest it and if it had gone up again we will talk about treating it. SO at her one year well baby checkup, they retested it and it came back at a 1.34, is that even possible???? Ugh.

Ella's one year well baby checkup was good. She is 28 1/2 inches tall, 23lbs 10ozs, and has a big head : ) Basically she is a chunky monkey with a head like her brothers and is actually above average in height for a girl with DS. Later that same day we had an appointment with a developmental pediatrician. Ella kicked butt. He did several different tests such as placing a cup upsidedown over a block (which Ella picked up the cup threw it on the floor and then played with the block.) and Ella aced them all. He said there was no need for him to ever see her again. Sounds good to me.

And then there is the ongoing ENT sagga. They too are out of town, though it is only a one hour drive. Basically Ella has had 8 sinus infections in a year each one taking 10 to 14 days of antibiotics. Also they did a hearing test last week and said it looked "flat" the doctor said he could see fluid in her right ear. He is under the impression that Ella has allergies and is trying her on meds for that. If this doesn't work he said we will talk about tubes, and having her tonsils and adnoids out. Not so thrilled about anything coming out but am fine with tubes if that will make sure that she is hearing properly.

So that is what we have been up to. Hunter is still loving school, has several girlfriends, and is a soccer star!! He cracks us up on a daily basis and is just a true joy. Ella thinks Hunter is the greatest thing in the world and lights up whenever he is around. Of course now that Ella is more mobile Hunter is becoming increasingly annoyed with her because she of course wants to play with his toys. About a hundred times a day I hear "Mom come get your daughter." "Mom, keep Ella Grace safe." "Ella, NO you are not a big kid play with your toys." It is so funny. And better yet when she is told no and redirected she now yells at me in a scary growling should not be coming out of such a cute face voice. Anyhow, if I am going to write everyday for 31 days I better stop for now!!!