Six Months

How did this happen?!  Six months sounds so grown up :-/.

Claire is 11lb 2oz and 23.9in, she's not on the growth chart but, for the most part, she's stayed on the same curve since surgery (other than a dip during the kidney infection).

She is rolling and scooting all over.  She scoots by pushing with her legs with her upper body and head sliding along the ground.  She has become more expressive and makes the best faces; she likes to stick out her tongue, tuck her bottom lip under her top lip, and make "kissy lips" the most - her "frowny" face is the most heartbreaking thing I've ever seen, she makes us both cry when she's upset! She says "ma" "ra" "ba" "ah" "eh" "mm" "em" and "da." She holds up her head and supports herself with her elbows. She is reaching for toys and her feet with straight arms. She has figured out how to spit. She started nursing [and now isn't very interested in her hands or pacifier any more].  And she LOVES to sit up [with support] so that she can participate in everything that is going on.

She LOVES attention, I don't necessarily have to be holding her all of the time but she sure does notice when I look away [and lets me know it!]! She wants eye contact and talking at all times. She is still a little unsure of new faces but her love of attention is helping her to get over that pretty quickly. She is full of joy and her smile melts hearts. And she adores getting and giving kisses, they're the one thing that make her giggle!

Here are some pictures:

Thank you all for supporting us, praying for us, and cheering us on these last six months [and during my pregnancy too!].  Your support has touched our hearts so deeply!

Be blessed and Merry Christmas <3.

Answering Your Questions: Question #1

We genuinely enjoy answering questions from friends and strangers alike about Claire and Down syndrome but, if we were being completely honest, sometimes those questions can sting. Instead of being offended *because it helps no one,* I have decided to take the time to answer a few of them to hopefully debunk some myths and to help spread awareness about the truths of Down syndrome.

Question #1: Does having a child with Down syndrome mean that you will be caring for a child the rest of your life?

Answer: Having a child means that you will be caring for a child the rest of your life. When anyone makes the decision to become a parent, we commit to support our children, at whatever level they need support, from the day that they are born until we are no longer able to provide it - this means something different for every child. None of us know what the future might hold for any of our children [or even for ourselves].

Individuals with Down syndrome have their own, unique sets of strengths and weaknesses just like any individual but I can share some generalizations. Individuals with Down syndrome are typically more sincere, more loving, more cuddly, more affectionate, have significantly lower levels of stress, are quick to forgive, do not hold grudges, are insanely flexible, have the most beautiful eyes and smiles, are very outgoing, and, although they experience a full range of emotions just like anyone, they generally [and genuinely] love life and people!  How many of us wish that all of our children would remain innocent with child-like faith, hope, joy and love?

Individuals with Down syndrome reach all of the milestones as their peers, typically, but not always, at a slower pace [if you remember, Claire started rolling over and communicating ahead of many of her peers although she is taking longer to master swallowing coordination, head control, and sitting up]. They are fully capable of living independent lives - although Justin and I both joke that we're not sure we ever want Claire to move out, she adds so much joy to our home! But like any parent, we will do our best to empower all of our children with the tools that they need to live successful and impactful lives.

Down syndrome isn't something to be feared - these individuals, like all of us, are a precious gift. Created perfectly in the image of God to teach us something unique about His character. If you remember back to our post about Holland (http://clairemichellehowell.blogspot.com/2014/06/holland.html)... We are still on vacation!!!! It may not be to the destination that we had planned for but we are enjoying every moment together and the unique sights and lessons that we get to take part in on the way that we wouldn't have gotten to enjoy without Claire being a part of our family.

I don't know why God chose us to be Claire's parents but I am so, so, so very thankful that He did! I didn't know how badly we needed her or what amazing lessons she would teach us all and we will be here, every step of the way to provide whatever level of support she [and her siblings] need, for as long as we are able to <3.

What other questions do you have?  I promise not to be offended - or share where they came from!  And if you have any comments about my answers, I'd love to hear your thoughts.

Christmas Time!

Claire has been busy!!

She only had three appointments this week which is about half what we have been used to. It sounds like this is going to be our new "normal" - yay!

Tuesday she had a feeding evaluation, the speech therapist agrees that she is likely still aspirating while breastfeeding but feels like we can continue to breastfeed safely with a few small tweaks to help slow down the flow. We are thrilled with this news, it still means we'll be pumping a little but we can live with that! She will be 6 months old in just 4 days but the therapist (and GI) feels like it will be another month to two months before she is ready to start any solid foods, with all of the other things we are working on, we are good with that. We bought her a special, reclining high chair for Christmas that her therapist is going to have retrofitted especially for her to help her sit up. The news of successful breastfeeding and no more feeding pump means that we got to send back Claire's pump, IV pole, and mommy's backpack last week! Our house is already much, much quieter.

Wednesday she had her usual PT, she did fantastic! Her therapist has commented at every single appointment that she can't believe how fast Claire is progressing. The skills that we are working on now are head control (especially in a seated position), putting weight through her arms (she has NO interest in doing this and is content scooting around using her legs with her head sliding along the ground), and supported sitting.

I love this picture - she looks like she shocked
even herself with her progress!

Concentrating really hard trying to figure out
how to reach for the toy

Today we saw her cardiologist, Dr. Park, these are always long appointments. Her heart is perfect! It is fairly common for the patches to leak and she has NO leaks! He said that her heart sounds amazing, chest X-ray looks great, EKG and Echo are perfect, and we don't have to see him again for SIX months! We are "graduating" from so many specialists, it is going to be weird adjusting to having so much "free" time again.

We celebrated two months post open heart surgery on Sunday, time has truly flown by! Doesn't she look great?!

We made and delivered Christmas gifts to all of Claire's doctors, surgeons and nurses today. It took all day to visit all of the clinics (especially with little ones in tow) but we ran into some very special people and we had a lot of fun!

Painting handprints on gifts!
Getting a 5mo to make pretty handprints is tough work.

"Thank you for helping me grow"
gifts for her surgeons and main specialists - GI and Cardiology

We made handprint ornaments for her care team and
special nurses at the hospital

Cards with pictures of Claire on them and a little note
accompanied all of the gifts

 Claire met Santa for the first [and second] time!

And Mommy received a very special package in the mail this week, a traveling Christmas sweater! The sisterhood sweater has traveled across the country since 2006 and has made its way through the homes of some very amazing women. I enjoyed reading the journal and stories of these fabulous women, many of which have spent lots and lots of time in the hospital just like us. The only rule of the sweater is that you have to wear it in a public place, journal about the sweater's adventures, and then send it along to the next warrior mama! I chose to wear it to Anna's school Christmas party to show how we [attempt to] juggle the needs of all of our kiddos and have fun doing it. Here are some pictures:

With less appointments, Claire has been busy following her big brother and sister around on all of their exciting adventures! Here are only a few from the last week:

Birthday party at Chuck E. Cheese

Gingerbread Man Hunt and decorating at Anna's school

Lunch with Grandma and Great-Aunt

Anna's Christmas Program at school

Hanging with Anna's principal saying goodbye
to all of the kids after a PFC cookie exchange

And another picture of Claire "showing off" her new skills!

Be blessed, dear friends! We wish you all a Merry, Merry Christmas. Regardless of the circumstances you find yourselves in this year, please don't be discouraged ... there is always, always, always much to be thankful for <3!

Bliss

First of all, many of you have asked how the Festival of Trees event was... it was AMAZING! The room was so much bigger and more beautiful than I could have imagined. I was beyond nervous but I think I did okay, ten minutes is a really long time to talk! My biggest regret was that I wanted to really convey to Claire's doctors how thankful that we are for them but every time I started to talk about them, I got emotional and my brain turned to mush ... hopefully they got the message anyway!  There was so much that I had intended to, but forgot, to say.  Here are some pictures.

Claire's heart surgeon, Dr Nuri 
and her general surgeon, Dr Acierno

Claire's Great Aunt and Great-Great Grandma
came to support us, her Grandma was there too!

Everybody fell asleep on the way home.

And we finished up the first of Claire's dresses!

Here it is compared to a typical 3mo dress 
- narrower and longer.

I think she likes it!  Not bad for the first one,
a few tweaks and we should have a few more soon.

And now for some more exciting news ...

Today was amazing!

I was sharing with Justin yesterday, on the eve of our appointments today, that I wish I could pause time. We had had a mini-break from appointments (except for PT) and Claire seemed to be doing so well. I was nervous about what today might bring and wanted to stay in our "bubble of bliss" for as long as I possibly could.

We started the day with a 3 mile jog while brother went to his sports class and then we watched him at his swimming lesson.  There is a 24-year old boy with Down syndrome who swims while Levi does and Claire and I had a nice little visit with his mom!  I love little "glimpses into the future" like these and she enjoys talking to Claire and remembering what it was like when her son was a baby.

After that we took a care package to a sweet little six year old girl at Mary Bridge who is having some trouble with her kidneys and, of course, Levi remembered the playroom and we couldn't leave the hospital without a quick trip there. We ran into one of our favorite nurses and had a few other reunions along the way to make for a fun little visit. The volunteers fought over who got to hold Claire first, it always blesses my heart to see how loved [and remembered] she is!

As you might remember, we were given the green light to start feeding Claire bottles with a preemie nipple about two weeks ago with quite a few rules in regard to length of feeding, listening for certain noises/cues, etc. and then to give the rest of the feeding through her NG tube. She was doing so well after about a week that when she pulled out her NG tube (for probably the 100th time), I decided just to leave it out and see what happened.  She did great like that for another week taking all of her feeds with the bottle so on Saturday I decided to try breastfeeding!! Obviously, we are trouble when we get a break from appointments ;). But she DID IT!  Five and a half months of pumping day and night, feeding tubes, feeding pumps, preemie nipples, oral stimulation, speech therapy and this girl is BREASTFEEDING! And this only added to my feelings of nervousness for our appointment today - I didn't want anyone to burst our "bliss bubble."

Well... her GI Doc came in, I excitedly shared the news of what I had done and thankfully, he was excited too!! We talked about whether or not we wanted to do another swallow study to check for aspiration and we both felt like, at least for now, ... ignorance is okay for us! She is happy, her breathing is good, she's gaining weight (11 pounds 2 ounces!!!), and for the first time in her life there are absolutely no surgeries on the horizon (all of this means the G-tube is off the table... at least for now!)!!! I'm all for enjoying these moments while we can and am so glad that he understands and feels like that's okay.

We also saw our favorite surgeon today - Justin affectionately calls her and Dr. Pickens "the A team" because we are just so thankful that we ended up with them on Claire's team! We feel beyond blessed to have such amazing people taking care of our little girl and truly believe that they're the best. She moved Claire up one more size with her dilators (14) but moved her dilations to every third day (from every other). She wants us to introduce small amounts of pear juice to help Claire with her, still irregular, bowel function and we only have to irrigate if she goes 48 hours without stool - yay!

And more big news ... we don't see them again for SIX (yes SIX!) weeks, I'm still in shock ... to go from being in just their clinic alone 2-3 times each week for the better part of Claire's life to getting to take a six week break, I don't even know what we're going to do with ourselves. It felt like a graduation so, naturally, we needed a picture!

Claire gets some vaccinations tomorrow morning that were delayed because of her blood transfusion. Vaccinations are harder on her body but they're extra important for her too. She got a pretty high fever and little cold after her last set so, hopefully, tomorrow's go well!  And then we have PT on Wednesday at the CTU - this is weekly now ... and that's ALL we have this week as far as doctor appointments <3!!

I cried on the way home today - We have driven that route countless times and I realized as I was driving that today was the VERY first time we have done it with only good news to reflect on!

At least for today, living right here in this moment ... is bliss <3.

Thanksgiving and a Little Break for Claire!

We have absolutely NO new [medical] news to report!

Since our last post, Claire has had lots of firsts ... Thanksgiving, family pictures, Santa pictures, wedding, AND her first snow.  Did you notice that I did NOT mention any doctor appointments?!!  That's right, we've had another FIRST .... a little break - 5 months and we finally went more than 3 days without a doctor visit, we have Thanksgiving to thank for that!!  It's surreal but, don't worry, we've been very, very busy trying to fit it all in before they pick back up again <3.

The stomach flu, bronchitis/sinusitis, AND hand, foot, and mouth have made their way through our house just in the last two weeks and Claire has remained 100% healthy so we absolutely are feeling your prayers!!  Maybe we should send some little brother's way ;)!  Keeping up with our crazy schedule with sickies has been difficult but we did it!!!

Wednesday is the day that we speak at the Festival of Trees, Bridge Builders Luncheon at the Greater Tacoma Convention and Trade Center.  I went out with the littles and got our outfits today. I'm working really hard not to be nervous but look forward to showing off little Ms. Claire and all of her amazing accomplishments. We would be grateful for your prayers if you think of us on Wednesday.

And here's what you've all been waiting for .... pictures <3.

Claire loves her Daddy <3.

She's a great little jogging buddy!

Claire's first Thanksgiving

Claire's first snow, she watched
big sister and brother from the window!

Daddy bought Mommy a serger so that, hopefully, we can
make some clothes that fit Claire a little better ;)

Claire's first wedding, Mommy's cousin Garrett!

First Santa photo!

**Christmas card spoiler alert .... if you'd prefer to be surprised when it comes in the mail, do not ... I repeat, do not keep scrolling!**

We love this beautiful life <3!  Thank you for taking the journey along with us!