Tuesday, December 29, 2009

SEW Much Fun!

For Christmas Mike got me a sewing machine and over the holidays my sister and mom taught me how to use it! We when got home and opened the pattern I had absolutely no idea where to start or how to read it...My sister and my mom talked back and forth and said things like "the selvedge", "cut on the bias", "top stitch", "right sides together", "thread the bobbin"-I felt like they were speaking in a foreign language and thought what have I gotten myself into? I truly had no idea how to do anything but I stuck with them and after HEAVY observation (Alexa was hovering about 2 inches above me while I was sewing) and instruction, I made 2 dresses and a cute applique for Bennett!

Of course I didn't want to start with a super easy pattern and I wanted to alter the pattern we had so that made things a tad more difficult, so my text creation may have to be easier since I won't have the experts with me. Here's what I (again with a ton of Alexa's and my mom's help:)) made:
I figure the dresses can be worn year-round with a turtle neck in the winter, short sleeves in the spring and sleeveless in the summer.

The girls loved them (we didn't have tights for Ainsley)!

Side view-living in the south for 12 years will make you grow to love bows but even these bows were a tad too big for me so I've already trimmed and sewed them back up and they look better I think.

Here's the little applique I made for Bennett, I didn't use a pattern, just cut out the B, used "Steam-A-Seam" (although I didn't do it exactly how the instructions said) pressed it with an iron and then sewed around the applique-next time I think I'll use a zig-zag stitch. {I think Bennett liked his new "B" shirt;)}




Had to show proof that I really did sew;)




Lex just threw this cute ruffle onto a shirt she bought from Target-so cute!

I've got this adorable baby shoe pattern that I can't wait to try but I need to get more practice and since I have all the time in the world that shouldn't be a problem;0!

Thanks again mom and Lex for all your help and patience!!

Sunday, December 27, 2009

Tight pants and Tripods

Bennett is now sporting his new "hip helpers"! Well, not all the time (thankfully), just during therapy. He actually doesn't "frog" his legs out that much but he does have looser hip joints than babies that don't have Down syndrome (more flexible due to DS) so they help keep his hips in line, especially while sitting.

His OT brought several sizes over and she had these in red and then the next size up was bright pink-thank goodness these fit:) But they work amazingly well to help Bennett stand and put weight on his legs. The big issue with standing is with his feet and ankles- they are very flexible so when he puts weight on his feet, he wants to stay like that but his little ankles are so flexible that at times his feet turn up causing his knees to buckle. It also doesn't help that his little thighs are now quite chunky so those flexible ankles have got a tough job! But the hip helpers really work to keep his legs from spreading out to the sides while working on standing and his feet are more stable as well.

Ainsley said "ahh, what is Bennett wearing mom?" I just laughed and asked what she thought about them and she said "ahh, they're cute...I guess" and then she wanted me to try the pink ones on him. LOL

*Edited: The PT said the bright pink ones fit better ;( -sorry Bennett, but mommy won't let anyone see them but your sisters and your therapists!*

Bennett is also getting really good at the tripod position....




However, I just read that this position should not be encouraged too much (great, now that Bennett is good at it!) I guess I need to have him prop his hands on some sort of a play tray on his lap so I don't encourage leaning forward and holding his head back in his neck while sitting-who knew?

But he did sit by himself for 10 seconds last week! He's still totally wobbly but his trunk control is getting so much better.




And here he is just hanging out with his best buddy, big sis Ainsley. Ainsley loves playing with Bennett and I have a feeling they are always going to have a very special relationship.

A little update- he went to the eye doctor (recommended at 6 months) and his eye sight and tracking were great, the only thing the doctor found was that Bennett has a slight astigmatism in both eyes. The doctor said it was common in kids with DS (of course it is, I'm thinking, everything different is common with DS-sorry, sometimes it just gets annoying!) but he said it doesn't mean he needs glasses and he may never need glasses. We go back in a year.

Bennett is still coughing a little so I'll probably wait until after the new year to get his blood tested again-I'll keep you posted on that! Bennett is now 7 months old!!

Tuesday, December 22, 2009

Everything Changed...

One year ago today. This was not the day we got the official results from the amniocentesis, that was December 26th, 2008, which made for a rather depressing Christmas holiday. December 22, 2008 was the day that my doctor told me that my afp testing results came back as a 1 in 10 chance for Down syndrome and that's when I knew. This was the day that my "perfect pregnancy" came to a screeching halt.

When the genetic counselor called a few days later on December 26th, I'll never forget that moment: my cell phone rang and I had to step out into the garage because the girls were happily (although loudly) playing with their new toys. I held my breath, just praying that she would say "everything came back normal" even though in my heart I knew. But she didn't. Instead she said "I'm sorry, but the amniocentesis came back positive for Trisomy 21". I can barely type this without sobbing. I don't know why it is still so hard to think back to that moment. I think I'm sad for the girl that answered that call. But I don't feel like the same girl today.

After some very sad weeks, the saddest I have ever been, I decided to send out an email to let all of our family (that didn't know) and friends know about our son. I'm a realist. And while I was very sad, I knew I had to snap out of it and try to move on. No matter how hard I cried it still was not going to change the diagnosis so this email was my way I saying: I've accepted it.

Here's what I sent:

January 6, 2008

Happy New Year to all!! We hope everyone has had a wonderful holiday this year as we have with our girls! Can’t believe it’s January, 2009! This should be an exciting year for Mike and I as we are planning on welcoming our third child into the world, a boy, in May. Many of you are aware of the recent diagnosis we have received for this baby- Down syndrome. For some of you this may be the first time you are finding out about this. Of course this came as a shock to us and was very difficult to even comprehend. We have had some time to accept this diagnosis and truly believe God will turn this into good. Mike and I want our family and friends to be aware of this now so when our baby does arrive there are no surprises or sadness just joy that a new life has entered the world. We know that many of you may not know what to say to us or how to act around us and we want you to all know that we are coming to peace with this and do not want you to feel sorry for us or awkward around us. All we ask is for your love and support just as you would if he did not have Down syndrome. The last thing we would want is for anyone to stop calling or asking us how things are going in fear that we may break down or not want to talk about it. We want you to be interested in how the pregnancy is going and once he arrives how he is doing. We know there will be challenges but we feel God sometimes leads us down different paths in life, although some paths are not where we planned or where we want to go, we know He will not lead us down this path alone. Mike and I are prepared to love and care for this baby just as we do our girls and ask that you do the same. I strongly feel after doing some research and talking to parents that have children with Down syndrome that it is a life worth living not something to throw away. And we will do everything in our power to help this child reach his full potential in life and know that we will learn so much from it.

In February we will be seeing a pediatric cardiologist to access the baby’s heart defect that was detected on an ultrasound. Heart defects in babies with Down syndrome are very common and can almost always be corrected with surgery- some not requiring any surgery at all. Of course we are hoping and praying to hear some good news at this appointment. We will not know the severity of his condition (Down syndrome) until he grows. Just as with any child, we will not know his capabilities or when he will reach milestones, be able to talk, read or write until he develops. We do know that the more early intervention the child receives the higher the potential and success. Again we will do everything we can to help our son succeed in life. Please continue to keep us in your prayers as raising three children without disabilities would be hard enough! We will keep you posted as we find out more. 2009 is sure to be full of surprises for us and I just know in my heart we are going to be pleasantly surprised. Please stay in touch!

Love,
Mike and Adrienne



When I hit the send button I had no idea what kind of response I would get. I had no idea that I would get an overwhelming amount of love and support from so many people. Sending that email was my first step to acceptance of the diagnosis and it was also my first view of how people would accept my son. I'm so glad I sent that. And I'm so thankful for the family and friends we have. And wow, Mike and I have been pleasantly surprised, beyond belief.

You've heard the saying "If I only knew then what I know now" - for me, that saying couldn't be more true. If I only knew then what I know now, I wouldn't have wasted so many tears, I wouldn't have spent sleepless nights worrying, I wouldn't have spent days and weeks being angry, I wouldn't have spent days and weeks being jealous. Man, If I only knew then what I know now....but if I did know then what I know now I don't think I would have become the person I am today. I went through a learning process about myself and sometimes I don't think God wants us to know it all because otherwise we wouldn't have a chance to grow.

No, I'll never forget the feeling I had when I rode down the elevator to see Mike after that appointment with the doctor on December 22, 2008. Oh, it was awful. When I saw him waiting he was sitting in the car with the girls just smiling and laughing (he didn't know yet) and then he noticed me through the window, still smiling but he could see I was not. There I was feeling like the world was crashing in around me. His smile went away when he saw my face. To think back at how very sad I was and then to look at Bennett now, it almost seems foolish. But I know it wasn't and that it was a learning process.

It almost makes Bennett's existence that much sweeter.

Sunday, December 20, 2009

Ainsley is 5!!

Ainsley you are 5 years old today!! You have been waiting for this day for a long time. I remember many conversations with you talking about how you will be able to do this or that when you are five. And now you are!!
Ainsley you came into this world as a very sick little baby. And you often ask mommy and daddy to tell you about when you were sick and you like to look at pictures of yourself when you were in the hospital. You feel very special that so many people helped to take care of you. And you were special indeed. Mommy and Daddy are so thankful that God was watching over you and we were able to bring you home!


This was the first time I saw you.
Getting your footprints!


Mommy holding you for the first time-I had to wait 11 days before I could hold you!


Daddy holding you for the first time.


This was the day you finally came home from the hospital after 5 long weeks. I'll never forget that day Ainsley.


Your first birthday party-1 year old!




2 years old!




3 years old!


4 years old!


5 years old!!


At 5 years old:


  • You love to color and you are so good at staying in the lines
  • You love to paint
  • You love kicking the soccer ball outside and I think you are going to be a good little soccer player some day.
  • You love to do your "homework" as soon as you get home from school and you're very good at it!
  • You love to pick out your outfit and everything has to match just perfectly (wonder where you got that from;))
  • You love to help mommy and daddy around the house and you are a great cleaner
  • You love playing with your sister Harper (barbies, dress up, store, doll house)
  • You love helping mommy take care of your brother Bennett and you love singing "Twinkle, Twinkle Little Star" to him when he's upset
  • You are the captain of the "bad word" police

You make mommy smile just by being you, Ainsley, you are truly just a wonderful daughter and mommy thanks God for you every single night!

Mommy and Daddy love you so very much Ainsley and we are so proud of you!

Happy Birthday sweet girl!

Sunday, December 13, 2009

A Winter Wedding!

Well we've known for about 4 months that the girls would be in uncle Brian's wedding and when it came down to it we were a little concerned about Harper, you know...our little two year old that can be quite unpredictable. Well Miss Harper proved everyone wrong and when it was time to step up, she got the job done! Both girls did and I'm so proud of them! It was a simple task but like I said, we were dealing with unpredictable children, take a look and see how they did! For some reason it brought tears to my eyes seeing my little girls as flower girls for the first time. My goodness I can't imagine how I'll be when they are the brides...
video


The wedding was beautiful and Lauren was a gorgeous bride! Unfortunately my camera did not want to work during the ceremony... I know, I couldn't believe it either but afterwards Mike attached the super zoom lens on and as long as I stood 20 feet away from everyone I got some great pics at the reception;)....



Sweet little flower girls!

Bennett with his Great Grandmother (MaMa)! And yes, my little man is wearing a tie-love it!

Oh this little one can be so sweet when she wants to be.

Brian and Lauren's first dance


The girls with Mike's uncle, Torrens

This little girl danced all night long!

And this one didn't want the bride to dance with anyone but her...




How cute is this pic of Lauren and Harper?!

Bennett called it a night pretty early.

Groom /mother dance



Sunday we drove about 9-10 hours back home in the sleet and freezing rain. I've been dreading this long ride back for some time now but you know, I need to give my girls more credit because they were great and especially after the last few days of visiting with family and dancing the night away! I'm just happy all went well and we made it back safe and sound.

Congratulations Brian and Lauren!

Saturday, December 12, 2009

12 Days of Giving- Day 11!

Life with Bubba, Chicky and Nika
Well these last few giving posts have revolved around the wedding the girls are in so on day 11 Mike and I created a slide show for Lauren and Brian to be viewed at the rehearsal dinner. It was fun selecting pictures from when they were babies and picking songs to go with the time period. Some tears were shed at the rehearsal so I'd say we were successful in creating a nice slide show and giving everyone some great memories to look back on:)

On a side note the girls did good during the rehearsal so if they can do the same today, we'll be in good shape! I talked to the wedding coordinator last night about what we would do if worst came to worst and one or dare I say both girls decided they did not want to walk down and she was so relaxed and said "whether your girls walk down or not, the couple is still going to be married and that's what we're here for, right?" LOL-she's right but I sill don't want my kids to be the ones that disrupted the wedding! They are throwing "snow" rather than petals so it should be interesting...

Thursday, December 10, 2009

Just To Clarify....

So you all don't think I'm totally paranoid, the reason I get a little worried when I hear about high or low platelets is because (for those that don't know) children with Down syndrome are at a higher risk for leukemia than the general population. I also follow many blogs where the child with DS has also had leukemia so I guess it's always in the back of my mind. Otherwise I don't think I would've paid much attention. Fortunately, there's something about that 21st chromosome that makes the survival rate for children with DS that have leukemia much higher but again, we are not even talking about that, I just wanted to clarify! Thank you for your comments, they did make me feel better. I will wait until Bennett is healthy and will have him retested again.

On a lighter note, we've got a family wedding that the girls are in this weekend-can't wait to share pics! Pray that the girls do their job minus any drama!!!

12 Days of Giving Day 8, 9 and 10

Life with Bubba, Chicky and Nika
On day 8 Ainsley and I finished up putting together little gift bags for all her classmates. We put a little ornament with their name on each one as well as some candy in each bag. Ainsley loves doing little gift bags and she's very good at telling me everyone's name in her class-there's 23!

On day 9 I was getting ready for our big trip to Charlotte for my brother-in-laws wedding. Our plan was to leave after Mike got home from work so I decided to vacuum out the van (Mike always gets on me for how messy I keep it-hey, with 3 kids, it gets messy) and I knew he would appreciate a clean van for a long trip. I also packed most of the car so when he came home he didn't have to do it all. I will admit having a nice clean car seems to make the trip a little easier:)

Day 10 we arrived in Charlotte and when we pulled up we noticed Mike's parents had not decorated for Christmas. Of course they've been extremely busy with the wedding and they were at our house for Thanksgiving so they didn't have time during that weekend. Mike and I decided we'd do it all for them! Mike turned the Christmas music on (yes, he's corny like that but I love him for it) and in a matter of 2 hours the tree was up, stocking were hung, candles were in the windows and the bushes had lights on them. We both love decorating for Christmas and it was fun for the girls to do it all over again for grandma and grandpa!

Wednesday, December 9, 2009

Should I be concerned??

Alright a little update on Bennett- the girls were sick and naturally Bennett got it and has had a terrible cough since last week. We've been to the doctor twice and had him tested for RSV and today found out he does not have it-yay! He's been diagnosed with Brochiolitis and the doctor prescribed a steroid but said to hold off and see if he gets better in the next couple of days. Okay, fine.

So she just called me and said she forgot to mention his blood work that was taken yesterday for his 6 month thyroid test. She said his thyroid and white blood cells were normal but his platelet count was a tad high- 755?? She said she likes to see it under 600 but that many doctors don't get concerned until it goes over 1,000. She feels because he is sick it may have caused the platelet count to be off and would like to have him retested in a couple of weeks.

So then I get on the internet (you know I'm going to do that) and all I can find for high platelet count is blood disorders and cancer! Anyone have experience with platelet counts and do you think it's just because he's sick and how high is really high?? I'm sure he's fine but I can't help but wonder...

Monday, December 7, 2009

From Our Family To Yours....


Since I can't send everyone a Christmas card that follows our blog I wanted to send everyone out there that reads this blog, that prays for Bennett, that comments and that just plain cares about our little family, a little virtual card. Thank you for taking the time this past year to share in "Our Unexpected Journey"-this blog has truly helped me to learn so much and has allowed to me to "meet" so many wonderful families out there and reconnect with old friends.

Merry Christmas
&
Happy Holidays
From Our Family To Yours!

12 Days of Giving-Day 7-Decorating!

Life with Bubba, Chicky and Nika

Since my parents were here for Ainsley's birthday party I was able to take Ainsley to school without the other two {this is a real treat since we go up two flights of stairs to get to her classroom!} Last week the teachers had asked if anyone wanted to help decorate the staircase and I did but there was no way I could having Harper and Bennett with me. However, today when I dropped her off there was a mom decorating all by herself and since my parents were with the kids {although I told them I would be right back :)} I thought maybe I could offer her a little help.


So I did and it was fun plus I got to meet a mom I didn't know, as well as another that came a little later. I was so glad I was able to do this since it was something I wanted to do but didn't think it was possible. Thanks mom and dad for watching the kids for a few more minutes!!

Sunday, December 6, 2009

12 Days of Giving-Day 6-The True Meaning of Christmas

Life with Bubba, Chicky and Nika

Tonight as the girls hopped into Ainsley's bed to read a book I pulled out the story of Jesus' birth and shared the true meaning of Christmas with my children. We talked about why we really celebrate Christmas and how Jesus was God's most precious gift to us. Sharing this story with them, to me is one of the best gifts I can ever give them, if they'll receive it.
I pointed out the shepherds, the animals in the stable and then the 3 wise men and in the picture one of the wise men had a big white beard and Harper shouts "That's Santa Clause!" - LOL. Oh my, maybe next year she'll begin to understand. Although she was able to tell me Christmas was when baby Jesus was born and Ainsley promptly piped in "but he's not a baby anymore!" Ahh, they make me laugh.

Saturday, December 5, 2009

A Princess Painting Party With Snow!!

Today we had a birthday party for Ainsley! She will be turning 5 on the 20th of this month {I have a special post for that day} but we've got a ton going on this month so we decided to have it a little early this year. Ainsley loves princesses and painting so why not combine the two?!
Snow started falling early in the afternoon and for the first time ever, I wanted it to stop! I was beginning to worry that her party wouldn't happen but we went ahead with it and all was fine.


The season's first snow!

In her special birthday outfit-my Ainsley is getting so big!


I decided to make her cake this year, tad stressful but I think she liked it!




Getting her face painted by "Cinderella" {Ainsley and her friends were pretty suspicious of Cinderella-she didn't look quite like the one they were used to so they grilled her about why she wasn't wearing her glass slippers among other things but Cinderella had good excuses and played right along!}



Harper getting her face painted.


Granddaddy and Bennett



Posing with Cinderella-Harper was convinced!

Some of the girls in their aprons getting ready to paint their pottery!

Both girls seemed to really enjoy painting their own bowl and plate.


Blowing out her 5 candles!
Yay Ains!

One last pose with Cinderella!


Ainsley opened her presents once we got home and her and Harper had a hay day! They were busy playing for over an hour while Bennett enjoyed the tissue paper!
So on day 5 of the 12 Days of Giving, we gave our daughter Ainsley a birthday party and we hope she has fond memories of it one day! We love you Ainsley, hope you had a wonderful Princess Painting Party!!


Life with Bubba, Chicky and Nika