Milestones

It has been a week full of milestones!

Just this weekend, Claire started holding up her head all on her own!!!  We have been working so hard on her head control [for months!] and the entire week has been full of happy tears as she conquers this huge feat over and over again. She even showed off for everyone at therapy today! Her physical therapist kept commenting how she had made incredible progress over the last two weeks (we missed last week because Claire was in the hospital). At our last appointment, Claire wasn't even trying to lift her head. Her heart is fixed, she's all recovered from surgery and the kidney infection and now she's just taking off!

Sitting up nice and tall for Ms Tanya 

Holding up her head AND reaching for a toy at PT

She found her feet this morning and she's also rolling ALL over the place - we lay her down and she's gone ... this also means that she did not take a single good nap today, rolling over is far too distracting.

Another big milestone for mommy and Claire, we went on our first run together on Monday! Claire was a great running buddy and we have lots of big plans for future runs.

Another milestone that we met this weekend was one that we've been waiting for but not quite as anxiously as the others ... we were asked for the first time by someone that we didn't know if Claire had Down syndrome. We knew the day was coming and were ready for it but it was a milestone nonetheless and probably a moment that I will never forget. I absolutely don't mind that people ask or know; it helps us to spread awareness about what Down syndrome truly is and the amazing things that our little ones can do. I just keep praying that people won't look at her and only see a diagnosis, they will see Claire.

Claire's big sister Anna also met a new milestone of her own, she completed her first service project. It was all her own idea too. She made eight cards (four for girls and four for boys) and matched them with specific mylar balloons that she picked out and then delivered them to the sixth floor of the hospital where Claire has now stayed three separate times. We are so proud of her and her big heart!

Anna's poster from her first service project

Claire has already had four appointments this week. There isn't a lot of new news, she has lost weight since she was discharged from the hospital but we aren't too concerned since she was fighting such a bad infection. We have started giving her bolus feeds so she is on the pump for 90 minutes, then off for 90 minutes at twice the rate she was on before. She isn't handling it as well as I had hoped but she also hadn't had any food in her stomach at all for almost two months so it will take her body time to adjust. This is the first step in making the decision about whether or not she will be getting surgery to place a G tube. The next step is a feeding evaluation which is scheduled for this Friday. The tentative plan is that the surgery will take place in Mid-December. She has [obviously] gained weight since she was born but she has been trending downward on the growth chart so it's just something to keep an eye on. She is at 10lb 7oz now which is not even a percentile.

The antibiotics that she is on for her kidney infection are giving her a lot of gas and making her uncomfortable so she is on an adult dose of probiotics and we have started irrigating again. She had an x-ray on Monday and that came back good! We always have to be extra careful about her bowel management because having Hirschsprung's Disease puts her at a much higher risk for enterocolitis so a few days without pooping got us an extra appointment with her surgeon this week.

She will be getting her first RSV shot on Friday, she will get one of these each month through the winter.

Here's a couple more pictures from this week of our happy girl <3!

Have a blessed week friends! We know it's a busy one getting ready for Thanksgiving but remember that the only thing that truly matters is that we have our faith and that we have each other <3.

1 Thessalonians 5:16-18

"Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus."