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.
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| I love this picture - she looks like she shocked even herself with her progress! |
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| 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 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!
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| Painting handprints on gifts! Getting a 5mo to make pretty handprints is tough work. |
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| "Thank you for helping me grow" gifts for her surgeons and main specialists - GI and Cardiology |
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| We made handprint ornaments for her care team and special nurses at the hospital |
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| 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:
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| Birthday party at Chuck E. Cheese |
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| Gingerbread Man Hunt and decorating at Anna's school |
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| Anna's Christmas Program at school |
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| 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!
For once, I'm at a loss for words because my heart is filled with so much joy reading this blog post! Congratulations on all progress and may God continue to bless you, Claire and the whole family. Claire is such a precious gift from God to all of us!
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