Busy start to 2018

Mighty Margaret has had quite a busy week!
We started the week out with going to the pediatrician for her 1 year appointment (someone pinch me because I still cannot believe my precious baby is a whole year old!!).  Margaret got her immunizations, we did a quick check for strep as her throat looked sore to the doctor, had a nice long conversation and caught up with our favorite pediatrician.  We're currently in the middle of an annoying disagreement with one of our pharmacies and our insurance regarding Margaret's main reflux medication.  We *think* we have a plan for now, but it's all super annoying and frustrating.  Anyways, Margaret did a lot of exercising of her lungs at this appointment but also flashed plenty of smiles and even blew kisses at one of the nurses. The best part of the appointment?  We got the pediatrician's support in attempting to begin a wean off of Margaret's feeding tube!  

Tuesday was supposed to be an OT day but I decided to cancel the appointment.  Margaret had a reaction to her immunizations and ended up with a fever and just needed a day to sleep and relax.  She's feeling much better today and we were able to keep our cardiology appointment.  We did have a swab taken and tested for influenza, just in case - negative, thankfully!

Today was the biggest day of the week.  Cardiology.  These appointments always stress us out as we seem to never really know what to expect.  Margaret screamed a lot during her echo but one of the nurses was able to calm her for a while with bubbles -- we had 3 people in our room during the echo and at one point the cardiologist came in as well.  Margaret is such a goon!!  She made it through the echo and I believe they actually got decent images - THANK GOD!
Next, she had her pacemaker checked and her settings changed.  Her pacemaker has been pacing about 1.3% of the time and that's right where we expect it to be.  Her settings were changed to let her heart rate go a little lower than it was previously allowed to do -- it was set to pace her if she dropped below 100 but now it will pace her if she drops below 80.  Part of the check includes the technician pacing her to make her heart rate go faster and slower which Margaret is not a fan of.  
When we met with Margaret's cardiologist you could just tell that things look good.  He was excited to share that her echo looked better than last time --- ummm, WHAT?!  
Overall the echo showed:
- the PFO that Margaret has now has blood flowing in the correct direction now (right to left) - previously it was flowing the wrong way.
- her tricuspid valve appears to be barely leaking, more like dripping compared to it being more than mildly leaking during her last echo
- the right side of her heart is still enlarged, however, the pressures look like they might be a tiny bit better
- Her Sats have stayed in the 90s since her last cath.  We've only seen it dip into the 80s once and that was during a nasty cold that she had last month.  
-- Margaret's heart looks so good!  All of the stress and scariness of her last heart cath were worth it.  Placing that tricky stent has helped her so much and we continue to be SO SO SO grateful for the amazing team of doctors and surgeons we have fighting for our little warrior.  It's fun seeing how excited they all get when she's doing so well.  While we were in the clinic we even had several other doctors pop in to say hi and it's always extra fun to see how they love seeing Margaret as well.  
We also got the a-ok to pursue a tube wean from cardiology so the next few months should be busy and exciting for Mighty Margaret!  We need to get this girl eating and right now we plan to take full advantage of how well her heart is doing and try to wean her.  Thank you for being a part of our village, friends!   

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.  😍  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! 💜