Blog Updates

  Being a stay at home mom is so wonderful! It was truly a dream and a prayer of mine for two long years before it all worked out. Strangely, I somehow feel more love for Emma the more I spend time with her. But maybe that's not strange at all, because the same goes for my relationship with Michael. I feel a lot more in love with him when we have "dinner dates", which I put in quotes because it's always us ordering food to bring home and then watching our favorite shows together. Or having a nice long talk about something good, or taking Emma for a walk at a Preserve where neither of us are on our phones for a couple hours!! 

 

 

 

  Anyway, in this post I wanted to talk briefly about some of the things I plan on writing about over the next two weeks in case the days slip away from me like the past four months have! In this post you will see some more nicely edited photos, which I made to try to look like film photos again. Like I did in *this post from November* about when we went to Delaware the first time, for Emma's bilateral distal femoral osteotomy (leg) surgery. That surgery post *is linked riiight here*. However, the photos now are from when we drove up to Delaware the second time, in mid-December. 

  So, of course, there will need to be a post about that trip- Delaware, Part 2: December. That is when she got her hip spica cast off and we saw her "new legs" for the first time. Meaning, they were finally bent the correct way after four and a half years! She got three or four sessions of physical therapy and then we took her home. While we were there we also checked out the light festival (during the day) at Longwood Gardens and also met up with our friends Ryan and her husband Ben at the tiniest zoo, then walked around for a bit, which is when I took all the "fake film" photos you see in this post. 

  I'd like to make a combined post of our 2020 and 2021 Christmases- both were wonderful!! First at our house in Orlando, which we sold in September, and then our apartment in Sarasota, which we just moved out of because a new company bought it at the beginning of the year and decided it would be a "fair" idea to raise the already insanely high rent by another $530/month! "Because that is the going rate these days," they told us.

 At the beginning of February, we found some disheartening news during a bronchoscopy. Emma's left lung is barely functioning due to a blockage. She stayed in the hospital overnight on February 11th after a procedure where the doctor tried to open her lung with a balloon. That was a super difficult night for Michael, due to issues with her ventilator settings, which caused her to not breathe well and have lower saturations than usual, and the respiratory therapist not listening to Michael about knowing the correct information even though he had a laminated picture of Emma's every day ventilator settings with him! I got home late and stayed with our dog until the morning since she has to go out several times a night because she is old.

  I definitely have to tell you about our mini-documentary that a UK news company came and filmed about Emma!!! That is a HUGE deal for us because we have been contacting companies, including Barcroft TV and Ellen DeGeneres, about Emma's conditions since May 2018 when she finally came home from the NICU. Nobody ever replied back to us. Since we had to wait almost five years for this opportunity, I won't make you also wait for that blog post to see the video. You can click this link to see *our 5 minute documentary on Vimeo HERE!!* But I'll still write more about it later with behind the scenes photos.

  Emma's little legs and wiggle feet, all the way up to her baby thighs, were casted for KAFOs (knee ankle foot orthosis) at the beginning of March, and the company just had them finished on Thursday. She looked so cute standing in them. We need to get the right size shoes for them, so she can practice walking since the bottom of the KAFOs have no traction and she would slide around. She finally had her physical therapy evaluation earlier in the month and I'm waiting for a call back now that she has the KAFOs. They said they could schedule her for actual physical therapy sessions once the KAFOs were made.

  Lastly (for now), I would tell you about our moves! Right now we are staying in a hotel for two weeks as we are in between apartment leases. But I won't post about that until we're settled into the new apartment, 30 miles North of the previous apartment. It's easier to put it all into one post. We'll stay there for the summer, in a one bedroom apartment, with Emma's crib in the living room, until our house is finished being built. We're hoping to move in by September at the latest, but our closing date is currently set for the end of July. Michael is eager to move in because he still doesn't feel like we really live down here yet.

  Some things I want to remember right now about the stage of life Emma is in, are that she always wants to hold whatever I am holding. I will hand her the empty formula bottle after I pour it into her milk bag. She played with empty boxes before we taped and filled them for moving. She will literally play with a Ziplock bag for an hour! I gave her a plastic plate to play with when my plate that she wanted had apple slices and peanut butter on it. She is getting very fast at scooting around with her leg splints on, which she wears all the time, even when sleeping, since she got her hip spica cast off in December. She is such a mischievous trouble maker and she knows it because she will constantly laugh when we tell her to stop or I say, "Oh my gosh, Emma, what are you doing?!" She has the best (non-verbal) laugh, so I am constantly tickling her most ticklish spots. She rarely cries, although she has gotten into a sad habit of hitting herself in the head if we don't hold her the second she wants to be held. And that's really sad because she is so great at being independent and really happy playing with her toys for a long time. She doesn't ask much of us, but we get busy.

  Emma is so smart and figures out how to get what she wants- physically and emotionally. Here is an emotional example: Two weeks ago it seemed like she wasn't breathing well when she woke up around 1:30am, crying and kicking. I was up late so I heard her, but wasn't able to give her another nebulized breathing treatment because it hadn't been enough hours since the previous one. I had just suctioned her trach and she was already on a liter of oxygen, which usually settles her. I woke Michael up even though he always has to wake up for work around 5:45 (now 5am that we live further North for the summer)! He came in and held her, which I also tried, but she kept pushing me away. Once he held her, she leaned into his chest and looked so comfortable, safe and calm. "See, she just wanted Daddy cuddles." He put her down after a couple minutes and she immediately reached her arms back out for him. He said, "I have to go to bed. Mommy can hold you." I leaned over to pick her up. She turned away from me and reached her arms up in his direction. It honestly didn't bother me because she gives me lots of sweet hugs and kisses during the day. I know she doesn't get the time with Michael that she clearly wants and needs, which I told him. He picked her up again and held her for five more minutes. She fell back asleep after that.

A physical example of Emma getting what she wants is that she is able to move the ventilator stand with wheels back and forth along the floor by pulling on the circuit tubing or the feeding bag tubing, and then pushing the stand legs away from her. Such a dangerous game. I have to watch carefully and definitely put a chair in front of the stand so she can't do that, and hand her a toy, if I have to leave her for a couple minutes to take our dog Sasha outside. Last month she learned that when she needs to be suctioned to crawl over to the suction machine, open the Velcro bag, take out the tubing and hand it to us. She started doing that all on her own and it's the cutest thing! I love watching her mind expand and see what new things she learns or teaches herself each month. I am beyond excited to see her start standing and walking with her KAFOs.