Eight Months

Time is FLYING! Is anyone else shocked that Claire is already eight months old?

Her growth has really taken off in the last two months, something that I attribute largely to her learning to breastfeed and being able to breastfeed her as much as she wanted. We haven't gotten much sleep but it's been worth it! Are you ready for her stats?!!!!

She is 25.6 inches (8th percentile) long and weighs 15lb 9 oz (15th percentile). She is wearing 3-6 month tops, 0-3 month bottoms, and she finally fits in newborn size shoes!

She is army crawling now and holds up her head like a champ. She sees something she wants and is determined to find a way to get it! She is just beginning to put weight through her arms but with her determination to get around, it shouldn't be long. She LOVES attention and comes alive as soon as she thinks someone might be heading her direction. She's a big talker, loves kisses, and has the best smiles.

After a month of searching for answers about her swallowing (visiting specialists and having testing), and some disappointing news about her lungs, we have switched back to pumping and bottles with a preemie nipple. Please pray that her lungs begin to heal and that she won't need as much medicine. She had gotten used to breast feeding so it has been a challenging week while she was adjusting but she is getting more used to our new (old) routine every day.

Here she is!!

And a little comparison:
Anna (3mo) and Claire (8mo) wearing the same outfit <3

Claire Always Gets There

Taking a week off for vacation means that we've been busy playing appointment catch up! Claire has had a busy, busy week.

We have been working with speech, pulmonology, GI, and even Claire's ENT to try to figure out a feeding plan that allows Claire to eat safely and protect her lungs. Everyone believes that she is still struggling with aspiration so we have decided to do another swallow study (her fourth!). This time we will spend longer trying to find more answers as to when (and hopefully why!) she is aspirating so that we can develop a plan to help protect (and hopefully begin to heal) her lungs, currently they are getting worse so it's important that we make some changes. Depending on what we find during the swallow study, she may have an endoscopy, laryngoscopy, and bronchoscopy done all at the same time so that we can gather as much information as possible. She had a scope done on Saturday to check her vocal cords and they looked good! For now, we have had to stop nursing her to sleep and during the night, so we have all been VERY tired this week as she gets used to the new routine, she has shed lots of tears. Because aspiration generally happens most often when babies are fatigued, this was just a small compromise so that we can continue to breastfeed, at least for now. She is still on twice/day breathing treatments for asthma.

Additionally, we saw the urologist on Monday because of Claire's recurring UTIs and abnormal renal ultrasounds. Truthfully, I thought at the most he would be concerned that she doesn't fully empty her bladder but he noticed when reviewing her ultrasounds with us that her kidneys appear echogenic and feels that it's absolutely necessary that Claire have a sedated procedure where they place an IV and inject an isotope into her bloodstream to see if her kidneys are damaged. We will be at Mary Bridge for an entire day (9am-3pm) for this procedure.

We also saw Claire's surgeon this week, she said Claire looks fantastic and we are able to completely STOP irrigations and dilations unless she doesn't pass stool for more than 24 hours, I'm sure you can imagine how excited we are for this news!!!

Finally, Claire has gained great weight, in fact, she has gained nearly too much! It is important that we "go easy" on Claire's heart and lungs because of all that they have been through. This means that we should make changes to her weight slowly. Since we've already stopped nursing during the night this week, we are hoping that is all of the changes that we need to make in order to slow down enough to make that happen.

Altogether Claire is doing very well! We get to celebrate how far she has come every single day, she is such an amazing little girl and she has come so far! It has been a little bit of a discouraging week, getting some unexpected news about her lungs and kidneys but everything pales in comparison to what she has already been through and we know that she will conquer these challenges too. I voiced some disappointment at one appointment this week with her trouble to swallow even pureés (because we're running out of ways that we can safely feed her) and her GI doc reminded me that "Claire always gets there!" and it's true, she always does. I am excited that we now have a plan to get answers so that we can help her thrive yet again!

As always friends, thank you for praying for us, for encouraging us, and for offering your support. The appointments, therapies, research, and added routines that, oftentimes, consume our day(s) could easily leave us feeling isolated but your little notes, comments, and messages of encouragement in the midst of it all remind us that we aren't alone and we can't thank you enough - nothing is too small and nothing goes unnoticed. What a story we will have to tell one day!!

She isn't too sure about putting weight through her arms just yet

She was sitting in her car seat but REALLY
wanted that piece of paper and she found a way
to get it! Mama cried. She's getting so big!

Wearing red for CHD Awareness Week and hamming it up
at her ENT appointment

Pretty Sunday dress

GI / Surgery Appointment

First teething cracker, she loved it!

The whole family wearing red to celebrate
FOUR months post OHS and CHD Awareness Week

"Hi, my name is Claire and I like to fold myself in half."

Have a great week friends!!!!  <3

Minnie Mouse!

We have made it home from Claire's first VACATION! It was also a family first and truly amazing.

A very special "Disney Angel" who follows Claire's blog and Facebook page reached out to us and arranged a special date with Minnie Mouse for the girls, gave us lots of tips about the parks, and even got us all souveniers. Claire qualified to have her stroller marked as a wheel chair AND they gave us a special pass so that she didn't have to be near crowds/germs. The way that it worked was, if we got to a ride and the line was 10 minutes long, we would still wait the 10 minutes but could wait without standing in the line - when we came back 10 minutes later, we would skip the line and hop right on. We used lots of hand sanitizer and antibacterial wipes but really, the parks were EMPTY which really helped keep the anxiety low, it was an amazing trip!

Claire watched her first Superbowl sitting outside on a restaurant patio and she even got to touch a dolphin. We truly were spoiled in so many ways!

Here are some pictures of her trip to Disneyland, Sea World, the beach, and the San Diego Zoo:

Waiting to board!

Kisses from Minnie Mouse

Our "Disney Angel," Tracy

Chip loved Claire too, he went out of his way to
say "hello" several times!  Behind Claire is Bart
(I think that was his name)... he also has Ds
and was so great with the kids. I love that anywhere we go,
we automatically have such a large "extended family" in the
Down syndrome community. Truly amazing people.

Sleepy Angel

Claire's first Minnie, she tried hard to sit up
so that she could get to her!

Yes, that's a real dolphin! She [Kallie] came to say "hello" to Claire <3.

Claire LOVES this book.

Sunglasses!

Tired on the plan ride home, it was a busy and FUN vacation.

We finally climbed into bed at 1:30 this morning (and Claire still woke up two more times after that) but we hit the ground running with a very full day. Claire has eight appointments this week [at least one every day except Sunday] to make up for the week we missed and to, hopefully, make some decisions and progress in regard to her eating/swallowing and breathing. We will update again after we get through them all.

As always, thank you for praying, supporting, and encouraging. We appreciate our "village" so, so very much!