Saturday, October 21, 2017

It's been a while!

Whoa!  It's been almost a whole month since we've shared any updates which I guess could be considered a good thing!  No updates means no major changes or happenings...right? 😏

she LOVES riding in carts
We still have about a week and a half until our next cardiology check-up and it has been kind of weird to have so much time between appointments.  Our job has been to check her sats every now and then to make sure she's staying within her parameters.  So far, so good, although we're noticing that she's trending a little lower with her highest level but still w/in 80/90s.  Occasionally she will look a little off to me and by the time I get her pulse ox on her she's pinked back up, but we make note of it and will discuss with her cardiologist at our next appointment.  The good thing is that she's staying stable and we haven't had to put oxygen on her in quite a while.  We tried to this evening when she popped into the 70s but thankfully she came back up pretty quick and the fact that she completely fought the nasal cannula was ok.  It's easiest to sneak it on her when she's truly in a deep sleep, but even then she wiggles it off -- can't say I blame her!  


A few highlights since the last update...
- Margaret had her 9-month visit with her favorite pediatrician.  It was a great appointment and mama had some time to just sit and chat with the doctor.  He's truly so great.  We really could not have landed with a better clinic or team there!
- reflux has been taking over our life lately and we continue to pray and hope that it will calm down soon.  
- Margaret had her first trip to the pumpkin patch!  She loooooooved it and we had so much fun as a family.
- we have an appointment with a new dietician in a couple of weeks!  This one is through the GI clinic and has worked with a lot of experience with children who have feeding tubes.  
- Margaret and mommy go to weekly OT to work on feeding therapy - it's nice for both of us, mommy gets some adult interactions and Margaret gets to show off her growth from week to week.  Still not eating anything orally but last week she did take TWO sips of warm water from a sippy cup!!  It. Was. Awesome.  

- we are doing daily exercises to stretch Margaret's lips and mouth muscles.  Thankfully she seems to think they are silly and will giggle and tolerate them most of the time.  Her top lip tie cannot be corrected right now since she is currently on a daily dose of aspirin.  However, the stretches seem to be helping with that, so we are excited to see that progress!
- the most exciting update is that Margaret is really starting to enjoy her mornings at daycare.  She even started to put her arms out to her favorite teachers when mommy drops her off AND She's starting to play around on the floor instead of just wanting to be cuddled and held all morning.  πŸ˜  Say an extra little prayer for these awesome daycare teachers because they not only genuinely love our little girl but they have dealt with learning how to use her feeding tube and pump, deal with daily barfing due to her reflux and have been keeping a nervous mommy and daddy updated with her progress.  They are saints!  
- Margaret's early intervention teacher from the school district brought a red cube chair over a while ago and she loves it.  It's so cute to watch her sit and stand and sit and stand and be so proud of herself when she does it.  We're now working on spending more time on her tummy and learning how to sit up from her tummy and how to get from her sitting position into crawling position.  No crawling yet, but she's close. So, so close!  We won't be surprised if she starts walking before she crawls, though...
- Margaret is putting together 2-syllable consonant sounds and it's the cutest thing ever.  She's learning that "dada" means daddy, and we're consistently hearing "mama" when she's mad/sad, and "baba" and "papa" are pretty consistent as well. 

It's so much fun watching Margaret learn new skills and experiment with her sounds.  She really is the poster child for happiness and she sure makes both of our hearts full.  

Hard to believe we're nearing the end of October.  We'll update after our next cardiology appointment soon! πŸ’œ

2 comments:

  1. Thanks for the update! I love seeing all the pictures on fb! Let's get together again... first of November maybe?! Can't wait to see her all dressed for Halloween!

    ReplyDelete
  2. I can’t stand it! She is so adorable! Also love the “dada” video. Cutest language sample everπŸ˜‰

    ReplyDelete

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