Seven Months

Seriously, how is this girl already seven months old?!!

Claire is 14lbs 4oz (a gain of 3, yes THREE, pounds in ONE month!!) and 24.6 inches.  She is back ON the growth chart.  8th percentile for weight and 3rd for height. She is wearing both 0-3 month onesies and pants although she's just about ready to move up to 3-6mo onesies (3-6mo pants are still way too big).

It is so much fun watching her personality come out more and more. She adores people, loves to make everyone smile (and she's great at it!), and is MAD unless someone is paying attention to her at all times. She gets lots of attention because who can resist that smile? ;)

She is scooting forward by using her legs and sliding her face and shoulders along the ground. She has started to put weight through her arms while she is playing in tummy time! And she is getting closer and closer to being able to sit up every day. She figured out how to blow bubbles and spit, she's got drool for miles.

She started solid foods this month, she's had green beans, peas, and sweet potatoes so far. She loves them and can't get enough but she is having difficulty swallowing so we've made some adjustments. Like everything, she will get there in time!

Here she is ....

Breathing & Solid Foods

Claire's appointments are starting to add up again, last week she had speech therapy (for feeding), PT, pulmonology, and a renal ultrasound (plus she accompanied big brother to the pediatrician on one of her days "off") which made for a 5-day doctor week. She is such a trooper!

We have some new news to share ... the pulmonologist reviewed all of her recent chest X-rays and feels that, this far out from heart surgery, we should be seeing a huge improvement in her lungs, respiration rate, noisiness, and effort that she is needing to breathe. Her lungs are still hyper-inflated and the peri bronchial thickening is actually getting progressively worse which means that there is something else going on. He has diagnosed her with airway disease / asthma. We have started three new medications to try to help, one steroid that is daily and the other two that are based on her symptoms. He feels that, in her case, aspiration is the most likely cause of the inflammation and recommended that we stop breastfeeding. As you can imagine, this was pretty disappointing news since we worked so hard to get to the point where she could do it. But, because she could be aspirating saliva, reflux, medicine, etc., I may have convinced him to give us a 2-week trial with the new medication before we stop breastfeeding and switch back to thickening (which, as you might remember, made it hard for her to have stools and we had to irrigate 2x/day). She also has tracheomalacia and bronchomalacia, which means that both her windpipe and bronchial tubes are "floppy" which can lead to retained mucous in her chest since her cough isn't as effective at clearing secretions as it should be. 

Claire isn't a fan of the breathing treatments

I sent a message to Claire's GI doctor and asked his blessing to start solid foods, my hope is that lessening her need for breastfeeding might help just enough that we can continue ... so, she had green beans for the first time this week! She LOVED them and is already trying to feed herself. Last night was the third time she has had them and she figured out how to spit ... needless to say, feeding Claire is quite messy. She grabs the spoon anytime it comes near her AND she spits (it is very much like a green bean shower for Mommy!), we have a lot of fun laughing though!

Her renal ultrasound results were about the same as her previous ones. The hope was that they would be improving over time so this is a little disappointing. We will discuss these results and the results of the VCUG that she had back in November with the urologist.

She is getting very determined to find a way to move around to get to what she wants. She has started "scooting" forward more and more!  She uses her legs and slides her face and shoulders along the ground, it's slow but it gets the job done. She is also getting pretty good at the "superman" (chest/legs off the ground at the same time) although it isn't quite as efficient in helping her move forward as she hoped it would be.

 

She celebrated 3 months post open heart surgery this week! Doesn't she look GOOD?!

And here are some more pictures from our week:

At the pulmonology clinic

Baby masks help to keep her healthy and germ-free
when we are in public places since even a little cold could mean a trip
back to the hospital because of her lungs/airway and small
nasal passages. She doesn't always leave them on (apparently
they're fun to eat!) but we try.

At her renal ultrasound

"Date night" at church with mom & dad

Sleeping through the PFC meeting at Anna & Levi's school

We have been working on a little project this week and have some very exciting news to share with you all in the next couple of days!!

As always, THANK YOU for taking the time to follow along and encourage us. We appreciate you all so very much.

Fevers & Another UTI

Hello friends!

We weren't expecting to have another update so soon but, as Claire has been teaching us all along, she likes to keep us on our toes. She has always had a difficult time with vaccinations so we expected her to feel yucky and have a fever after her six month shots on Thursday. However, late in the afternoon her fever was over 103 and stayed in the high 103s and low 104s all through the night, she was miserable. Thankfully her pediatrician was the one on call and he helped us through the night. She received her monthly RSV shot the following morning (Friday) and then, per his recommendation, we headed over to urgent care to have a few tests ran.

She had a catheter placed for a UA, another CBC, they irrigated her ears, and did a swab for the flu. She was negative for the flu (yay!) but very obvious UTI. She received the same IM antibiotic (shot in her thigh) that she had in the hospital in November for her last kidney infection and we went back on Saturday morning for the second dose. That made for 8 total shots over three days (and three days in a row at the pediatrician's office)! Thankfully the doctors have put in her chart that we aren't supposed to be in the waiting room so we get taken straight back to an open room which has been awesome! That keeps her away from most of the germs and, hopefully, from picking something up when we are there so often and, most times, they jump us right to the front of the line which we don't complain about either!! I think we should start calling her "Princess Claire" ;).

Today, they called with the results of the urine culture, it was the same bacteria from her kidney infection last time so we got to start an oral antibiotic today. We will go back in 10 days to re-test her urine and make sure that the infection resolved. And because she keeps getting these, we will also be seeing a urologist. Her pediatrician's theory is that she isn't emptying her bladder all the way (I guess they saw evidence of this when they did her VCUG in November) and she will also be getting another renal ultrasound on Friday to see how her kidneys look compared to the last one that they did which will help answer some of the questions as well.

Her fever finally broke on Friday and she has been much happier, although she still isn't sleeping!

Coming up this week ... she has Speech [feeding] therapy on Monday, PT and Pulmonology on Wednesday, and the renal ultrasound on Friday. I should have another update at the end of the week!

As always, thank you for cheering us on. We appreciate you all so much! It is such a blessing to feel surrounded by such an incredible army of prayer warriors and encouragers.

Here's some pictures of our princess:

Answering Your Questions: Question #2

[The second post in our series: Answering Your Questions. Click here to view question #1.]

Question #2: Claire looks so "normal." Does she have a mild version of Down syndrome?

That's because Claire is normal, we are so much more alike than different. Down syndrome (or Trisomy 21) is the presence of three copies of the 21st chromosome, an individual either has three or they don't, meaning there is no such thing as a "mild" version.

Claire has a mixture of family features from Justin and I expressed with the presence of the extra chromosome. She has typical features of Down syndrome: beautiful almond shaped eyes, low set ears, small neck, short stature, lack of bridge in her nose, cute little curved pinkies, and my favorite, Brushfield spots in her eyes. Saying that she doesn’t look like she has Down syndrome can actually be hurtful. It implies that she’s pretty in spite of her chromosomal makeup but we think that she's beautiful because of it. Her face [and especially her eyes] tell the story of all that she has overcome and the way she loves life and people with such incredible authenticity.

Claire and her big sister, Anna, share a lot of common features!

What other questions do you have?  Please share them with us!!

Claire's First Christmas

It has been a little while since we updated, we have been fully enjoying all of our family, appointment-free time!  The only appointments that we had over break were Claire's therapies.

She celebrated her first Christmas at HOME with lots of family. Many of our incredible friends showered us with unexpected gifts and we are so thankful to all who loved on our kids! You truly blew us away.

Claire has been doing well! She is still breastfeeding and appears to be growing, we have her next weight check on the 8th and will know for sure. She has been fighting some pretty bad congestion which could be due to reflux and/or aspiration but we are doing okay with saline/suctioning at home for now. Claire's nasal passages and airway are very small so we have to keep an extra close eye on her. We are still doing rectal dilations but we haven't had to irrigate in a couple of weeks!

In therapy we are working on building Claire's back muscles so that she can have the strength to sit up. She got a reclining high chair for Christmas that will help her to learn to sit up with her back straight, we will adjust it so that it's more upright as she builds the strength. We are also working on getting her to put weight through her arms so that she can use them to push up. After we master those skills, we will work on sitting.  She should be able to start solid foods sometime this month or next. We have a special Hirschsprung's list for the order that we will try them in, certain foods to avoid, etc. but it sounds like everyone expects her to do just fine!

In 2015, our appointments will shift from more of a medical-focus to more of a therapy-focus. Claire will participate in weekly PT, OT and Speech [to include feeding] therapies. She will still be seeing all of her medical specialists but as she continues to do better with weight gain, stooling, etc., those appointments have and will continue to become more spaced out!

Here are some pictures of her Christmas/New Year adventures:

Cousins on Christmas Eve
Quincy 2mo, Claire 6mo, Aiden 4mo

Officially a 6-stocking family!

Christmas Morning, Claire's first! 

She loves sitting up in her new reclining
high chair!

Claire snoozing on Christmas morning, she
didn't quite make it through all of the presents.

Bundled up with Auntie while the big kids
ride their new car from Grandma & Grandpa

Extended family dinner on Christmas Day

Claire and her Auntie and Great-Aunt

Checking out her new toys with big sister, Anna

Big Brother likes Claire's new toys too!

They played hard! 

Oh how I love these eyes!

Anna and Nana

Claire visited the American Girl Doll store with
her big sister, she's barely bigger than the dolls.

The girl cousins - Amira & Claire, Anna, and Falysha
Claire is about the same size as the dolls! 

We ran into some very special people,
Hilary and Charlie

Claire loves looking at the pictures of our friends
and their kiddos! 

Claire didn't take any breaks from hard work
over Christmas!

New Year's Eve - she didn't quite make
it to midnight

First time in the swimming pool on
New Year's Day!

We hope that all of our friends had a blessed Christmas and a wonderful New Year! Claire plans to fully enjoy our last days at home before we get back into big sister's school routine which mean interrupted naps and early mornings - plus, she is loving all of the extra attention of having her home with us!

Thank you for cheering for our princess <3.