Merry Christmas!

Wow! Hard to believe it has already came and in a few hours it will be gone. What a fun day we had though. My mom came down on Christmas Eve, we went out for some yummy food and then looking at Christmas lights, while sipping on coffee, we had a good time! All the kids seem to really like all of their presents, even Tawni was just playing and playing and really seeming to have a great time!
Ty was so excited about his little motorcycle and after pushing it awhile he got the hang of actually riding it while pushing the button, and he really seems to love the firetruck bed but not enough to sleep in it...
Tawni seemed to love everything even Ty's toys:)
Tori loved her camera and TJ really liked the shoes, I was so glad I got the right ones, and Tanner was excited about his stereo. I got the bag I wanted and Gerald got the money to get the bible he wanted, it all turned out so good and exciting.

Now my little Miss Tawni is not feeling to well. Eary Christmas Eve morning about midnight, the croupy cough started, so at 12:30 a.m., it was a trip to the ER for a breathing treatment and some steriods. I am so frustrated with her getting this all the time and nothing I can do, and all the drs can say, "is well it's part of her down's", I am so tired of hearing that and also the phrase, "she will grow out of it." I have decided that down syndrome is just a wait and see game, or at least that's how I feel, and the Lord knows I am not good at waiting and seeing, think that's what He's trying to teach me??
So then after getting home at 3:00 a.m. to get a few hours of sleep, back up at 6:30 to get ready for her ENT appointment, (thank goodness my sweet husband let me take a good nap later that day). I guess the appointment went ok, the dr thinks her hearing is ok but she didn't exactly pass the hearing test, so we have to go back in a month to re-do the test, and if she doesn't pass then we will have to go in to the hospital to sedate her and do an in-depth hearing test. We are kind of hoping that we will have to do the in-depth test, with the test we can get an accurate account of what her hearing levels are and they will also be able to scope her throat to check it out since she gets the croup so much and because she has reflux so bad. Her spitting up is so frustrating for us, we should own stock in carpet cleaner from all of the spit up she does on the floor. And it seems like I can't get the drs to understand how bad she spits up and can someone or something help us??? and then I get those 2 phrases I just love so much (see above)....Ok, I will stop I am just venting... she is a precious angel and such a blessing to us, she can be so sick and having trouble breathing and still just be smiling so big...
Well it's off to the dr again tomorrow to check on her cough and her yucky nose, praying also I can get her into a stomach study before February...
Merry Christmas again!

My Little Tawni

Well I do believe we finished the Christmas shopping today, except for 2 presents, but I don't need them until after Christmas, so that is good!

Tawni had her 2 appointments this past week, for her eyes and heart, and I have to say they didn't go as well as I was hoping but of course it all could be worse.
The eye dr diagnosed her as mildly cross-eyed and we will check that again in 3 months and then he said she has nystagnis where her eyes twitch and she has to tilt her head to see, it also really effects their vision where they can almost be blind. He said we will watch that real close also and maybe in time she may have to have surgery.

The heart dr said her heart was strong and her EKG was perfect but she still has her PDA, and when she is 21/2 he will go in and close it.

It all makes me so sad and overwhelming, but it also makes my love for her and my Jesus stronger and for me to really lean on my faith so much more.

We have an ENT appointment this week on Christmas Eve morning so I am hoping it all goes well!

Merry Christmas!

The Weekend

We had a great weekend!
Friday night, Tanner and Tori went to a school dance, so after a quick trip to McDonalds we took advantage and did a little Christmas shopping.
On Saturday my precious mom came down in the late morning and we went out and did a little more shopping and then she watched the kids, Yes, 1st time for me to leave Tawni, Gerald and I went out on a date, well kind of a date, with his boss and his wife, but no kids! After dinner we spent some much needed time together ALONE!
Sunday was church and then we took mom to lunch and then Gerald stayed with babies and mom, Tori and I went out for yes more shoppping! But I am so excited we went to Goodwill and there it was a Fire Truck bed,and it is in good shape! So my mom bought it for Ty's Christmas! He is going to be so excited! I can't wait for him to see it!

We have a busy week, 2 drs. appointments for Tawni, eyes and heart, I am praying all goes well!!

Updates

Well let's see it has been a few days....last thursday Tawni had her 1 year appt. and it went ok, well the outcome was ok, the appt was the pits. She got 3 shots and had to have blood drawn for her thyroid, so they pricked 2 fingers to get blood and pushed for 20 minutes to get blood out and she cried and cried and so did I. The test came out good though, her thyroid is fine. Then at midnight the striders started...so at 1:30 a.m. we were at the ER getting a breathing treatment and steroids. We were there til 4:00 am... so tired.. my husband did stay home that morning to help out and then to take her back to the dr for a check-up. The ER dr finally said after 6 or 7 times of having croup it is time to see an ENT so we have an appt on Christmas Eve..

Friday night, my husband watched both little ones (only the 2nd time in a year)and me and Tori met my mom in Salado and we strolled, shopped, and drank lattes. It was a blast!! I hope that I showed Gerald enough how much I appreciated him watching them.

Saturday night was another Christmas party, Gerald really didn't want to go but I talked him into it, so we went. And I kind of wished I didn't now. We took Tawni and got all kinds of stares, I left crying.. wasn't sure if people were staring because we brought the baby, or because she is downs. She was fussy anyways, I think she could feel how uncomfortable I was. So we ate, then left to get some good coffee and then to wal-mart for a little grocery shopping and then home to bed.

Sunday was the DSACT Christmas party, and we had a blast! Tori was an angel and danced with a boy and even tied his shoe for him, I was proud of her for just treating him normal. It was full of activity and beautiful views, and Ty had a good time and did good without a nap and then crashed later at bedtime and slept so good.

Monday the kid's worker came and were discussing Tawni's eyes, I really feel come December 17th, she will have glasses and that makes me a little sad, I was really hoping we could wait a little while longer. But with mom and dad, and several siblings having glasses it's most likely she will have them even if she didn't have DS.

Well about time for bed...

Zoey

This little girl is so cute and her mother is an inspiration to me!
I will be glad to pray for her and can't wait for her to get better and be healed!

Tawni's Birthday

I can't hardly believe it, Tawni is one years old today! What a year brings...
a year ago I quit my job to stay home and a year ago I was introduced to Down Syndrome. I really don't know what to say about it, I think about it and Tawni has really taught me. She's taught me to have more empathy, she's really mellowed me out. And moreover, what God has taught me, His plans are not my plans. He made the way for me to stay home where I thought I never would be able to. He's taught me how much more faith I need and to really lean on Him and trust Him. It' brought me and my husband and mother closer. I have had my pity parties and questioning why, but WHY not me, WHY not us, so I ask God you have given us this gift what do you want us to do with her, what more do you want us to learn and what do you want us to share?
She is the best baby, just so mellow and happy, unless you have some kind of food that she likes and wants more of. She has learned to growl at us if we don't feed her fast enough, it's just so cute!

We had a good Thanksgiving, our whole family was together which was so nice.
Got to do lots of shopping and almost done with the Christmas shopping.
Probably spent to much money, but really feel like I found some good deals.

Took Ty to the mall and he actually sat on Santa's lap and wasn't scared hopefully
when we take him back to get his picture taken he will do it again and still be happy.

Saturday

Today was our first time to meet with the Inkdots from DSACT and we had a good time!
There was a few newborns and young babies, I just wonder if the parents have totally accepted it or are they just going through the motions like I did when Tawni was younger. I need to find out if there is an opening for me so I can help out, I believe I am ready to jump in and get experienced.

Tori is over at her dad's with the other kids and I just miss them. And Tanner acts like he is trying to get out of going to Thanksgiving for me and that will just totally break my heart if he doesn't go.

I love my Tawni so much, my husband keeps telling me she is such a blessing, like I don't know that...
I was so proud of her today, just sitting up and playing and crawling around, she loved the swinging, I will have to post some pictures.

About time to go to bed...See ya!