Well, I currently am 18 months old. It has been quite a packed 18 months, but I think we are doing OK right now. I am learning to walk...still a little wobbly, but i do pretty well. Good considering that my physical therapist said that down syndrome kids usually don't walk until after 2...so i am ahead of the ball game there. I am also able to go up and down the stairs at home (safely...meaning i don't fall down them...as much as i used to) So I am making great progress. I have learned about 8 sign language signs...some of them look very similar, but I am learning. I am looking forward to Summer so i can go out and play. I am off oxygen during the day, still have to have it at night, but we are making progress...look forward to the day that I don't have to have it at all.

thanks for checking up on my progress...I will keep you updated as I grow. :)

Whats in a Name

We were sitting around this weekend, and Kinley commented that Tenna had a lot of Nick Names. So I thought it might be fun to list all her nick names and how or why she got them.

First and formost.... (1) Tenna Shoe. This nickname came before she was ever born...

when I told Dannika what I planned to name our baby on the way, the first thing she said was....I'm going to call her my little Tenna Shoe....so from that day on...we all called her shoe...

well when she was in the hospital and daddy was able to go see her. they had her on a CPAP machine...well the hose for it is hooked up and strapped on your face and connected to your nose...so kyle started calling her (2) tennaphant...so she had her second nick name.

with being called tenna shoe......it got shortened to (3) Shoe...and then (4) shoe-bop....

someone had heard a saying of hip-hop-a-pottamus....and of course tenna was talled (5) shoe-bop-a-pottamus.....

Seems like they keep coming too, each new day that she does something, someone tags her with some new nick name, she has been called (6) tenna toad, (7) toad , and receintly when she learned to squeek.....(8) squeeky..... (9) MISS T (10) T......(11) T-Bop...... And...Eventually....Ataya says once someone has a kid and tenna is an Aunt....she will be (12) AUNT TENNA (antenna).......

If you have a name that you think she has been called, post a comment here so we can add them to her running list.....

She is growing and getting taller and braver each day. she is now trying to stand here and there,and she will walk if you hold her hands. About 3 weeks ago, she started sitting up on her own. It is quite funny, because we have made such a production out of it, that now when she does it she looks around as if to say" OK...We are all supposed to be clapping now...Go ahead and she starts clapping her self." Although I cant say this has been easy, It does have days that make me glad to be her mom

thank you for following her story......she continues to make progress

So much time has passed by.

In 5 days, Tenna will be 14 months old. What started as something that I was sure we would not make through a month, now we are 14 months into. It hasn't been easy, but it has added much to our lives. Tenna continues to make progress. She started out at 8 pounds at birth. Now she is 17. So she has added 9 pounds....4 of those in the last month and a half. And she is eating from a bottle and little bits of table food now. we are looking forward to being able to get rid of the feeding tube, AGAIN....hopefully once and for all.

Tenna is still on Oxygen, though we have cut back from 1.5 liters an hour to 3/4. She will probablly be on it for another 6-10 months.

If you really push, she will sit up by her self...she doen't like to, she would rather you help her.

She is learning that throwing a fit will usually get her what she wants. She has learned that there are 5 people in her home who either love her lots or don't like to listen to her cry and shriek.

She loves to stand up against the couch, coffee and end tables and anything she can. she would rather stand than sit, usually. She is starting to try to take steps to get around the table or couch or what ever she is standing at.

We want to thank all who have followed us on this journey...It will continue, and we will keep you updated as much as possible where there are things to report.

Tenna Loves French Fries

Before Salise's wedding, Tenna's sisters took her to Chilies for dinner. Tenna decided that dispite the french fry being almost as big as her, she liked fries.

One Year

We never thought this day would get her, yet it made it.
Tenna was unfortunately in the hospital for her first birthday. BUMMER.
But at least she made it to her first birthday.
after 3 weeks in the hospital, she got to come home on oxygen, a feeding tube and 4 medications.
She is a lot of maintenance, but a joy in our lives...
it is good to be home and back into the routien again.Thanks to all who prayed and helped out during the ordeal.

I had my first Easter. I went to Kristi's house and she took Pix of me in an Easter Basket.
I am growing. It has been 6 weeks since my surgery. I am feeling lots better. I am happier than before, and I have a little better color. I see my cardiologist this week to see how i really am doing. I gained 2 pounds in the first 3 weeks i was home. I have been off my pain meds now for a week or so..but when I get really upset daddy says i still need them. I am ready for warm weather so we can be outside.

WE ARE THROUGH SURGERY

No pix yet, but we are through surgery. It took about 5 1/2 hours and a lot of praying, nerves and time, but we are throught surgery. The Dr. says that there are a couple little leaks in the two valves that needed to be fixed, but that we would just have to watch and see how they are. But She is doing well. off the major drugs that just sedate her. her blood pressure is good, and they have her off the ventelator. We are just healing and trying to get back home as soon as possible.
she has three chest tubes that drain the fluid from her chest. one really big insision, a iv in her jugular vein, an arterial iv and an iv in her foot. she has pace maker wires hooked to her heart right now, but we are praying they wont have to use them.
Just keeping her in our prayers that we will be home soon.
thank you to every one for prayers, thoughts and help, and support. we love you all.
thanks
Kim, Kyle and Kids

Sleep Tight!!!!

DREAMING OF HEAVEN????

Little Monster

Well, Tenna's sisters could hardly wait till she could fit into these jammies.....she has made it.

Now they are all fighting over who gets them after she grows out of them.

We got a tenative scheduled date for her surgery. March 11.

We are trying to keep her healthy so we don't have to pospone it. But she is growing a little bit.

she is getting taller, not much weight gain, but on Sunday Feb 7th, she rolled from her belly to her back....She is growing up. I try not to wish her to grow too fast, but at the same time I want to see her make the milestones like she should.

We love her very much. couldn't imagine sending her back or giving her away. We love her to pieces, and she is the most spoiled little one i have ever seen....until she starts screaming!!!! Dannika doesn't know what to do with her when that happens. We cant figure out why she does...I think it is just fussy time in the evening (for the most part)

But We love her, and she has added so much to our house.

Febuary...Going on 5 Months Old

Well...I am almost 5 months...We are preparing for the surgery that will be scheduled the end of this month

I will be in Salt Lake for about a month while undergo my open heart surgery to correct the huge hole in my heart that hasn't closed up.

I am progressing very well.....except as you can see from the photo....I still don't eat from a bottle. Which frustrates mom very much at times.....but she realizes this too shall pass....in due time.

Tenna is almost rolling over and has found that she has hands....and her favorite thing...to suck on her thumb or fingers....they are her new second best friend (best friend her feeding tube)

I am certain that she has a magnet in her hand and the tube is metal, because if it is anywhere near her hand, shecan find.....and subsequently pull it out....several times a day in fact. WE have stopped feeding therapy till we are done with surgery. her feeding therapist didn't want to make some progress and then loose it because she will be gone for a month or so.

I am still very scared, but know that I cant change it....or change the out come...what ever it may be.

we will post more later..

keep watching

SMILE!!!

Just Me......

3 & 1/2 Months

Well,
Tenna is 3 1/2 months old. We went to the Dr yestrday, cause they were worried about her thyroid, Test came back normal. Which is very good. One more hurdle down. Who knew there were so many things you have to watch with down syndrome babies. I freak every time someone gets a cough or sick. and now I see on TV that adults should have the pertussis shot so that you dont give it to your baby who is still able to get it till they have had all 3 series of the shot. I have never been so concerned in my life.... She seems so fragile, yet at times so tough.
She is trying to roll over, not quite there yet, but very close. Her Dr was very happy with her progress and activity.
She still is very stuborn when it comes to learning to eat with a bottle though..... Doesn't want to yet..we may just go straight to solid food. Mom has had a very big lesson in patience.
We are still planning on surgery in Feb or March. Scary!!!! but with prayers and lots of faith, we will make it through. thats it for now. keep checking in periodocly!!!

Merry Christmas

Well, I made it to Christmas. Just 4 days before, I turned 3 months. So far, my sisters are having fun playing dress up with me and they spoil me rotten. I am doing feeding therapy, because i don't eat yet, (not that I cant, I just wont) Which makes mom very frustrated.
I can be very stubborn....Hmmm....wonder where I got that from..... MOM OR DAD????
Anyway, I am growing..starting to smile and really getting active. I got lots of toys & cloths for Christmas...Dad said "NO MORE CLOTHES". But Santa must not have got the message.
I have an appointment with my cardiologist in January, and that is when he will decide when my surgery will be. I go to physical therapy once a month and I am progressing very well. My physical therapist says I should be expected to keep up with any other kid my age...so we plan on it.... I don't get lack of therapy though....Dad makes me exercise every time he holds me, and Dannika makes sure she gets some of my exercises in too...I have great help at Home. I think they have decided to Keep me!!!!
So that is it for now... I will keep you updated periodicaly!!!!

Hi Everyone,

Look at me growing. I am now 6 weeds old and growing like a little week....OOPS! i get confused sometimes. I am still working on feeding...not doing too bad, and I am off oxygen (MOST OF THE TIME) I am getting spoiled rotten... you shoud stop by some time and help with the spoiling. I am getting big and strong enough now that if you are healthy, I can have company.

See ya soon,

Tenna :)

I am Growing!!!!

I have a nurse come check on me each week. as of yesterday, I have gained 1 pound 3 ounces.

I have had some days when i get by without extra oxygen. Still need some help now and then.

My sisters have me spoiled already...if i am not being held.....i'm not happy.......what a wonderful life. :)

My Baby Shower

I had my first big outting today. Kristi Burke threw me and mom a baby shower. We had so many family and friends there. Got lots of pictures with me and my family, and my aunts & grandma and Great Grandma.

HOMECOMMING!!!!!!!

Didn't think this day would ever get here. On Dannika's 21st birthday, Tenna got to come home from the hospital. She is on Oxygen, a feeding tube and an oxygen sensor. But she is home. We had a scary first night. the oxygen sensor had a malfunction, so it went off a few times with false alarms during the night. Scared mom and dad, but I was OK.

My sisters got to hold me for the first time today. We recorded it with pictures and put a sticker on the calendar.

I stopped by the NICU to say goodbye to all the wonderful nurses that took care of me while I was in the hospital. Too many to list by name. Mom counted over 16 that took care of me. They are very special people.
So I am at home now, and trying to make progress.

Rooming In

Exciting News! Kim got to room in with Tenna last night, and will again tonight. This is in preparation to go home. If all goes as expected, Tenna will be going home tomorrow. Tenna moved to the pediatric wing yesterday and is in her own room.

Kim and Tenna are having a sleep-over in Tenna's room.The "rooming in" is for Kim to practice taking care of Tenna and all of her needs where she still has back-up in case she has questions.

Tenna will be going home on oxygen, a heart monitor and an NG tube. The oxygen will likely continue until after her heart surgery, and the NG tube is a feeding tube, Tenna still prefers this way of eating.

After Tenna goes home, she will still be very high-risk. She cannot afford to get sick. Please be very cautious and considerate of this. Your love and concern is appreciated.

Making Progress

Tenna is making progress.
This morning, she is taking 40cc's at each feeding. If she continues this good, they will up it again.
She is still on 1/16th of a liter of oxygen.... which they say isn't much, but sometimes she forgets to breath deep, and her oxygen saturation goes down a bit....
Scary to think of taking her home, but we all want her home soon. Dannika, Ataya and Kinley are wanting her home yesterday if not sooner.
We thank you all for your prayers and concern.
We look forward to homecoming Day!!!!

Introducing Your Little Sister!

The big news for the day is that Dannika, Salise, Ataya and Kinlee met their little sister! through the window. Because of the risk of spreading germs, Tenna is not allowed any visitors other than her parents.

Kim shared the exciting news that Tenna is still improving. She is now taking 20 cc's of milk at a feeding. The ultimate goal is 60 cc's (2 ozs.). If she continues to handle this much well, they will increase the amount.


Her oxygen is turned down now to a 16th of a liter, sometimes it needs to be turned up during a feeding. Babies with Downs Syndrome often have trouble coordinating sucking, swallowing and breathing, Tenna is working hard to learn to eat.

She was also taken off her T-COM. This is a machine that monitors her CO2 output.

Recently when Kim went in to feed her, Tenna stayed awake for 1 1/2 hours! what a special time to spend together. Kim was so excited to see her alert for so long.

We are continuing to pray for little Tenna's progress and love to hear of her success.

posted by Steffany