31 for 21: Happy Halloween!

 Happy Halloween! 

 

31 for 21: Blood Draw and a Thank You

 

On Wednesday, Claire had her blood drawn for her 9 month thyroid check.  I have been dreading, and praying about, this appointment for weeks.  Before we went in to the hospital I called the lab to see who their expert in hard to draw kids was.  I knew what days she worked and was as prepared as I could be. 

When we were called back for the draw I explained to the gal there that Claire was nearly impossible to get blood from.  After her OHS we had 5 or 6 NICU and PICU nurses try and fail. So I wasn't too optimistic, but we needed to try. 

We wrapped Claire in a warm blanket and I rocked her for about 15 minutes.  By then she was toasty warm and getting sleepy.  We laid her on the table and only took one arm from under the blanket.  There was another gal there just to hold Claire's arm.  Claire watched very calmly as they poked at her arm.  When she stuck Claire with the needle, Claire didn't even flinch.  She had to search just a tiny bit for the vein, and throughout the whole thing not a single tear was shed.  We got the blood we needed, and it was, by far, the best blood draw we've ever had.

On a different note, thank you all for you emails and comments on my post about Brian.  It's kind of scary to talk about such a personal situation, as you can never be sure what the reaction will be.  I'm sure that post made some people uncomfortable, where they just didn't know what to say.  But I'm so thankful for those that did leave comments.  And if I haven't responded to your emails or comments, I haven't forgotten about you!

31 for 21: Reece's Rainbow

Claire has blessed my life in so many ways, but one of the things I am most thankful for is being introduced to Reece's Rainbow.  Reece's Rainbow started as a local outreach program for parents who recently received the news that their child had Down syndrome.  In 2006, the program expanded to include international adoption, focusing primarily children with Ds, but there are children with other disabilities on the site as well.

In Eastern Europe, where the adoption program in the largest, there is no support available when a child is born with Ds.  There are no community groups, no therapy, no inclusion in schools.  Parents are pretty much forced to give their children away, whether they want to or not.  There is such a stigma surrounding disability that parents don't really see any other option available.  These children are placed in orphanages, and live there until they are 4-6 years old.  Once they reach this age cutoff the children are transferred to mental institutions.  Many don't survive more than a year or two once they are transferred.

I often browse the RR site, and my heart is always heavy.  These children are in my head and on my heart constantly.  I wish I could personally save each and every one of them.  Since that isn't feasible, I donate often, and this year I am a Christmas Warrior.

Every November and December Reece's Rainbow has a Christmas Warrior program where people can fund raise for a specific child.  I'll be introducing you to the sweet girl I am sponsoring soon.  With just a few days left until the launch of this years Christmas fundraising, there are still children on the site without sponsors.  The goal is to have every child sponsored, and to increase their adoption grant by $1,000.  The biggest obstacle in international adoption is the huge cost, and the truth is that children with the largest grants don't have to wait as long to be adopted.

I know many of you who blog are aware of RR, and may already be a Christmas Warrior this year.  If you've been thinking of signing up, but haven't done it yet, there is still time.  Just click here for more information.

31 for 21: Wordless Wednesday

Day 27:  Bath Time

31 for 21: 5 Years Ago

5 years ago my world was turned upside down.

It started like any other day.  I went to work in the morning, and then home for lunch with Brian.  We ate, talked about what we had planned for the afternoon.  I reminded him he needed to call his mom that night, and we said goodbye, I love you, see you tonight...

When a police office walked into the office a few hours later and asked for me, it didn't faze me at all.  I work at an insurance agency, and it's not unheard of to have the police ask if one of our clients has coverage.  I expected them to tell me one of our clients had been in an accident.  Instead, they came into my office and shut the door. They asked if I knew Brian. I said I did, that he was my husband.  They said there had been an accident.  I sat and waited, knowing they were going to tell me he was in the hospital, maybe hurt badly.  But when they told me he'd been killed, all the air left the room.  I gasped for breath, and remember seeing my tears hit the floor.

They opened the door to the adjoining office, explained what was going on, and my friend came into my office.  This part is all a blur.  I think people were talking, I know I was crying, and then I had to get out of the room, sure I was going to be sick.  I sank down on the bathroom floor and just sat.  I remember being so concerned about where I was going to live.  Not only had I just lost Brian, but I was losing our house as well  (It was provided as a benefit of Brian's job).  Even at the time I knew this was a strange thing to worry about, but I wasn't really thinking clearly.

When I came out of the bathroom the officer asked about notifying Brian's parents.  They offered to send an officer out to their house to tell them about the accident.  All I could picture was Brian's mom, home by herself, when this officer showed up to give her terrible news.  I just couldn't put her through that, so I did the notification.  And to this day, it is the hardest thing I have ever done. 

I went into the conference room and called her.  I was crying and barely able to catch my breath.  As soon as she heard my voice I'm sure she knew something was wrong.  I told her that there had been an accident, and that Brian was gone.  She wailed, and that sound will forever echo in my head.  I don't know what else was said except that they'd be on their way to our house soon. 

After that I tried to get a hold of my mom again.  I'd tried earlier, and couldn't reach her.  I don't remember if the line was busy, or if she wasn't answering.  My dad was also called, but I honestly don't remember if I talked to him or not.  By this point I was exhausted, and probably only an hour or so had passed. 

I was taken home and remember lying on the couch while a friend went to look for Sage, one of our dogs.  He was in the pickup during the accident, but no one had seen him since.  He was found a short time later, completely unharmed. I stayed on the couch while the house filled with people, and the phone started ringing. I know I was there for it all, and maybe even participated over the next few days, but I don't remember much else.

For all of my wonderful family and friends that were there then, whether physically or through your prayers, thank you.  Your love, prayers and support were what kept me going.


ETA:  Now that I'm done writing this, it seems like I ended rather abruptly. There really is no good place to end though, because the story keeps going.  There was the funeral to plan, a move away from our house, and the world just kept turning around me.  But most of all, there is still missing Brian.

31 for 21: Step Up For Down Syndrome Walk

Day 25:  It was a month ago (yep, I'm a procrastinator), that we participated in our first Step Up for Down Syndrome walk.  The walk was held on a beautiful Sunday morning in Denver's City Park.  The Walk had about 3,300 people walking, and raised more than $233,000.  There aren't too many pictures of Claire from the day because her I didn't see her much of the walk.  Her cousin took the stroller, and I didn't see her until we got back to the tent.

Our walk does a tent village, and it made it easy to turn the walk into a full family day.  We brought lunch, and the kids were able to run around in the grass.  I didn't take the time to walk around a look at many of the other tents, and I really wish I had.  It would have been a great way to get ideas for our next walk and just to see some of the other families we knew were at the walk.

31 for 21: Random Updates

Day 24:  Today it's quiet at home.  Claire is at the farm with Darren.  I'm *supposed* to be getting caught up on my household accounting, so I'm not terribly behind for year end.  But I couldn't resist taking a few minutes for a quick update.  While I'm missing my girl, it's also nice to camp out on the couch with my computer and football on the TV.

This Wednesday we sell our calves, and it will be Claire's first sale barn experience.  She's such a people person that I'm sure she's going to eat up all the attention.  Selling the calves signals the beginning of the "quiet time" on the farm.  The calves will be gone, the cows are still on cornstalks, and the farming is wrapped up.  The next month is filled with maintenance and clean up before we bring the cows home and start calving again. 

Since we started Claire's reflux meds (about 6 weeks ago) she's been refusing baby food and yogurt. She will eat table food just fine, so we're just going with that. So far she's tried hamburger, chicken, grilled cheese, french fries, sausage, pancakes, carrots, sweet potatoes, avocado, hummus, and apples. I may be missing some, but overall I think she's doing great. She doesn't eat very much at one time, usually just a few bites, but I'm thrilled with the variety she eats.

I'd hoped to take Claire to the pumpkin patch today, but since she's not home, I don't think it is going to work.  We will probably have to just settle for pumpkins from the store.  We had almost an inch of rain on Friday.  A little warmer weather would be help dry things out so that I can get some fall pictures of Claire.

Ok, I've procrastinated enough....

31 for 21: 9 Month Stats

Last Wednesday Claire had her 9 month well baby appointment.  She is still growing very well and weighed in at 15 lbs 10oz.  That is a 4 lb gain in the 4 months since her OHS.  She is 26 inches, and her measurements put her at 5-12% on the typical chart, and 35-50% on the Ds chart.

In the last month she has learned to sit unsupported, and 2 weeks ago she learned how to get from her belly into sit by herself. Right now she gets there by way of the splits, but I think she'll be able to get there from her side before too long.  Next up, bearing weight on her legs, which she isn't a fan of so far....

31 for 21: Wordless Wednesday

 Cousins  

It's hard to get 3 little girls to all look in the same direction, at the same time.  :)

31 for 21: Playing Catch Up

Day 12:  These days it seems like I am always playing catch up.  I'm behind on laundry, dishes and of course, I'm behind on the really important stuff, like blogging and reading other people's blogs.

This weekend was another busy one for us.  Saturday morning Claire and I attended our first local community group.  There were 4 other moms and 3 kids there.  I'm always a little nervous going into situations where there may be older kids with Ds.  I expect to be a little uncomfortable, and so far, that just hasn't been the case.  The three kids on Saturday were from 3-9 years old, and they were all awesome.  There was a wide range of abilities, but I think I think I will learn a lot from the other mothers that have gone before me.  Claire was the youngest there, and I'm going to learn all I can from the experiences of the other moms. 

On Saturday afternoon we headed to my sisters.  My aunt was visiting from Texas, and while it was a short visit, it was great to see her.  She sells Lia Sophia jewelry and she and my mom set up quite a few shows while she was in town.  I'm hosting a catalog show, so if you'd like to get started on your Christmas shopping, let me know and I'll send you a link to my party.

Saturday night was spent at the farm, and Sunday morning we headed to Brian's shoot.  After Brian's passing we set up a scholarship fund in his honor.  It is for students going into an Agricultural field, and each year we hold a hold a sporting clay shoot as a fundraiser.  This year Darren was weaning calves, so neither he or I shot.  While I missed shooting, I haven't picked up a shotgun since last year, so it probably wouldn't have been very pretty anyway. 

We finally made it home around 10pm on Sunday night (which is my excuse for not getting a post up).  We had Claire in her jammies for the ride home so we were able to get her out of her car seat and drop her right into bed.  While I love our busy weekends, and visiting with family, it sure is nice to get home again.

31 for 21: Open Heart Surgery Advice

 

Four months ago today I'd just handed my baby girl off to a surgeon, and was anxiously awaiting updates on her OHS.  Today, Claire is healthy and thriving, and that scar on her chest is the only reminder of her surgery.

I have a friend whose little girl will be having OHS soon.  She doesn't share Claire's extra chromosome, but she does have the defect (AVSD) that so many of us are familiar with.  To help prepare Lu's family for her surgery I wanted to put together a list of things that were helpful for us, or things I wish I'd known a head of time.

• See if there is some place other than the main surgery waiting room for you to wait during the surgery.  We were able to wait in one of the outpatient hospital rooms and it worked very well.  It was quieter than the main waiting room, and also allowed me a place to pump.  This was important because I didn't want to have to leave to pump and miss an update.
• Bring snacks and water with you for surgery day.  I didn't want to risk missing an update, and having food with me meant I didn't have to make a trip to the cafeteria.
• Have something mindless to do during the surgery.  I had a magazine to flip through and my computer to keep me occupied, and it helped keep me from worrying as much.
• Get a room at the Ronald McDonald House.  When Claire was in the PICU, I was allowed to stay in the room with her overnight, but there was no shower, only a shared bathroom.  Getting out of the hospital for a bit and getting freshened up really helped my state of mind.  Once she was moved to the floor there was a full bathroom in her room.
• I had a radio beside Claire while she was in the hospital.  It helped calm me, and also offered some relief from all the hospital noises.
• Let the nurses take care of the procedures that may be scary or painful.  You should be a source of comfort for your baby, and not associated with her tears.
• Baby Legs are a great way to keep your little one warm while she is still covered in tubes and wires.  And, they're awfully cute!
• ETA:  I knew I'd forgotten something!  Thanks Becca for the reminder.  Looking at pictures of other kids after surgery was very helpful.  While it was still awfully hard to see MY baby with wires and tubes everywhere, at least I had an idea what to expect.  Here are Claire's surgery pictures.

If you have additional advice or suggestions, please leave comments!

 

31 for 21: Random Stuff

 

Day 8:  Claire is in bed and I'm tired.  Darren is gone tonight, and it's days like these that I have tons of respect for single parents.  Don't get me wrong, I love being able to spend extra time with Claire (I am only working 3 days a week), but when Darren is out of town, the days and nights wear on me when I don't have help.

Tomorrow morning is our first Ds community group meeting.  Actually, last month was the first meeting, but Claire and I missed it because we were out of town.  I hope that we meet some families in our area that I don't know about, but I'm not sure if anyone new will be there.  This is one of the hardest things about living in a rural area.  There just isn't a large population of people with Ds in our area.  I only know of about 8 kids with Ds in a 50 mile radius.  There may be more, but still, that's a pretty small group of peers for her.

And, because I'm feeling fairly uninspired tonight, I'll give you a couple of pictures from Claire's first silage harvest over Labor Day weekend.  Please excuse my crazy looking dog too.

31 for 21: Counting My Blessings

 
Day 7:  Many of you who read this blog know me through Claire.  And so, you've only 'known' me for about 9 months.  But before Claire, and before I married Darren, I was married to Brian.  October will always make me think of Brian, but today October doesn't bring the sadness it once did.

Yesterday would have been Brian's 33rd birthday, but nearly five years ago he passed on.  October used to be the beginning of some hard months.  It was both the month of his birthday and the anniversary of his passing.  For a while, Thanksgiving and Christmas were very hard.  Holidays never seem as joyous when you are missing a loved one.  But today, while I still miss Brian very much, I am able to focus on the blessings he brought into my life.

I am thankful for Brian's wonderful family. His parents, sister and nieces, grandma, aunts, uncles and cousins. While I don't see as much of them as I used to, they will always be my family, and I love them very much.

Most importantly, I am blessed to have had Brian in my life.  We had eight wonderful years together, and I would be a very different person today if I hadn't known him.  I am so thankful for all of our wonderful memories.  The times we laughed until we cried, our trips together, and especially the days that were all alike.  Those days where we worked our jobs, spent the evening together, and then got up the next morning to do it all over again.

Those days make up the bulk of our lives, and I've learned to cherish them. To slow down and appreciate all that I have in my life. I've learned to pick my battles.  There are things that may seem huge at the time, but really are insignificant in the long run.  I've learned not to hold grudges.  Forgiving someone always lightens the load on my shoulders.  And I've learned to say "I love you" everyday.  So that those in my life always know how important they are to me.

31 for 21: Wordless Wednesday

Day 6:

31 for 21: Types of Down syndrome

 

Day 5:  It's getting late and I'm tired so this is going to be a quick post, but one that addresses a question people often wonder about, but may not ask....will our next child have Down syndrome?  The short answer is no.  The long answer, with all the info on the different types of Down syndrome is below.

1. Trisomy 21 (nondisjunction) is caused by a faulty cell division that results in the baby having three #21 chromosomes instead of two. Prior to or at conception, a pair of #21 chromosomes in either the egg or the sperm fails to separate properly. The extra chromosome is replicated in every cell of the body. Ninety five percent of all people with Down syndrome have Trisomy 21. (Claire has this type of Down syndrome)

2. Translocation accounts for only 3% to 4% of all cases. In translocation a part of chromosome #21 breaks off during cell division and attaches to another chromosome. The presence of an extra piece of the 21st chromosome causes the characteristics of Down syndrome. Unlike Trisomy 21, which is the result of random error in the early cell division, translocation may indicate that one of the parents is carrying chromosomal material that is arranged in an unusual manner. Genetic counseling can be sought to ascertain more information when these circumstances occur.


3. Mosaicism occurs when nondisjunction of chromosome #21 takes place in one of the initial cell divisions after fertilization. When this happens, there is a mixture of two types of cells, some containing 46 chromosomes and some with 47. The cells with 47 chromosomes contain an extra 21st chromosome. Because of the “mosaic” pattern of the cells, the term mosaicism is used. This type of Down syndrome occurs in only one to two percent of all cases of Down syndrome.

Regardless of the type of Down syndrome a person may have, a critical portion of the 21st chromosome is present in all or some of their cells. This additional genetic material alters the course of development and causes the characteristics associated with the syndrome.

 

31 for 21: Be Beautiful, Be Yourself, Continued

 Day 4:  This is continued from my post yesterday...

Tim Shriver was presented the 2010 Quincy Jones Exceptional Advocacy award, by Quincy Jones himself.  Tim was a very eloquent speaker and it was obvious he is incredibly passionate for The Special Olympics.  There was also a video montage of some of the athletes that had me very excited for Claire to participate, if she chooses.

The 2010 Quincy Jones Exceptional Advocacy Self Advocate Award was passed from DeOndra Dixon to Karen Gaffney. 

Karen Gaffney is an absolutely amazing speaker.  She was completely comfortable in a situation that would have me sweating like crazy.  And, I noticed she only glanced at her notes once during her entire speech.  She is tiny and beautiful!

The fashion show started with models showing off clothes from Saks

But these models were the real stars of the show.  There were 24 models with Ds, and they ranged in age from about 10 to 30.

Her retro dress and glasses were adorable

These guys seemed to be having a great time being escorted by a Nuggets dancer.  The guy on the left totally reminds me of Barney on How I Met Your Mother.  He's very handsome!

This young man was having a blast.  He was dancing and hamming it up the whole way up and down the runway.  You could see he was just eating up the attention.  This young lady is beautiful.  She was crowned Homecoming Queen last year.  She is also TALL.  She was escorted by Chauncey Billups of the Nuggets, and she wasn't much shorter than he was.

While all the models were awesome, these last two pictures were my favorite groups.  These two are your typical pair of high school sweethearts.  He's a football players, she's a cheerleader, and they are so cute together.  This was one of those moments that put a huge smile on my face, and also had me picking out boys for Claire to date....Grady and Lucas are at the top of my list!  :)

This young lady was escorted by Miss Colorado and they were awesome.  They had a whole routine worked out for the end of the runway which included a shimmy, hip bump and blowing kisses.

Darren wasn't able to join me for the event, so my friend Kristen went along instead.  We had a great time and will definitely be attending next year.  We are just debating if we will be guests, or volunteers.