Long Lost Toes (OT)

   On Thursday, July 21st, our friend and Emma's occupational therapist, Meredith, came down for the day. It was so great seeing her again since we hadn't seen her since the beginning of September when we moved down here. We are working on a project together that I am very excited about!! My mom and I met Meredith in the NICU when Emma was just 10 days old. I'm not sure how much later it was before Michael met her. But yesterday we had a lot of fun talking about our memories (happy and sad) about Emma's 323 days in the hospital before we got to bring her home. There were even some stories I told her that she had never heard about. And just to make sure I got my facts straight, about 20 times during that day I said, "I think.. actually.. let me check the blog!" So thank goodness for all my medical facts and events that I wrote down over the years, especially during the first year. 

  There are a lot of posts about my pregnancy with Emma up until the end of April 2017 when we had our baby shower, before we found out there were going to be a lot of medical issues. But she is making every single day count, after I was told at 33 weeks by the MFM doctor (Maternal Fetal Medicine) that Emma was measuring five weeks behind and that, due to her heart structure, she would "not be compatible with life", and that is what matters! Fun fact: within the first two days after being born, the heart issue had resolved itself!! 

   Fun fact #2, I found this baby photo of Emma (from July 7th, 2017) on Facebook and was surprised that it was not already on the blog. Especially considering most of the pictures I post on Facebook are the same ones that I use on the blog. A rare gem! Ugh, I wish I could feel how tiny she was again. She feels so heavy now, haha. I guess that's why people keep having babies- to feel the tiny fragile, delicateness again?

  *** If you have not read that "Completely Compatible with Life" blog post, please do! Or even if you have before, when I wrote it last year, but you haven't read it recently, I urge you to -please- read it again. It is such a HUGE part of our story with Emma and I think about that day all. the. time. It really helps me be extra thankful. More than my normal amount. Here it is. >>> Thank you Jesus! 

  So, back to the recently fun day with Meredith, we were talking about the tiny orthotic leg braces that that she made for Emma to help her knees bend correctly, as well as a soft wrap for her hands. I looked through this blog and it never shows any hand wraps in the pictures. Maybe I have other pictures that I didn't post, but those would be on my hard drives, which are in storage for now. She looked through her phone and still had those pictures from five years ago!! Ahhhh! Teensy Emma toes! I asked her to send them all to me! She had them for physical therapy purposes, without getting a picture of Emma's face (that wasn't allowed), but we knew it was her because her other leg was up by her shoulder, haha.  

  >> Here are Meredith's "long lost toes" pictures!!  So cuuute. :)

Her foot is wrapped in that one because they had to prick her for another blood gas. :(
I hated seeing all her little needle pricks, on top of all the tubes and everything she already had in/attached to her, but it gave them precise measurements of the oxygen and CO2 levels in her body.

   The braces had to be placed and wrapped a certain way, since her legs were unusual. However, so many nurses (who didn't know Emma very well, since at the beginning of her NICU stay, when she was in the Pod that had 4 babies to a room, she would have different nurses a lot of the time) and they would put the leg braces upside down or on the wrong leg. Meredith said she even walked in one time and the braces were on her elbows!! Come on, people, you can clearly see that this 3 pound baby's arms are normal, and her legs are not! Meredith marked "Top L Thigh, Bottom L Thigh" and the same for the right in Sharpie. (At least on the ones we still have- maybe those were from a few months later.) There were small Velcro straps that didn't seem hard to put on, but I guess the nurses were busy, so they did it fast- and wrong.. Plus Emma has always kicked her legs.. a lot! She still does. So the braces got moved around, and before you know it, the knee part is at her shin, which doesn't do any good. By that time Michael and I walk in, and in an angry whisper, I'm like, "Oh my gosh, are you kidding me!? Meredith made a super clear step-by-step instruction print out of how to put these on. It's right there!" (She did. I wish I had a picture of that to show. Maybe it's on the hard drive.)

*Five Years Later*

Now they just looks like knee guards for rollerblading, haha!

   I kiss the bottom of Emma's feet a lot. They are so cute. Those little piggins! But I don't know if it has to do with the fact that we couldn't kiss her for the first six days of her life. Well, I'm pretty sure I kissed her (on the forehead?) when I got to hold her for a minute once she was born, until she started turning too purple and they had to rush her to the NICU. But since the bottom of her feet were always up by her chest, I can always hear myself saying in a quiet, whiny voice, since we have it in a video, "I want to kiss her foot." But one nurse told us not to touch her, or to barely touch her. When my mom and I went in on day six, I asked if I could kiss her and Nurse Karen (who became my new favorite), said, "Yes! Of course! It's your baby! Did someone say you couldn't!?"  Once in a while now Emma will pull her feet away, but I say, "Excuse me, I'm the Mommy. These are my baby feet. Nom nom nom!" Usually she doesn't mind, and my loud kisses makes her laugh. 

Part II: Meredith to the Rescue! :)

  In November 2020, I was frustrated that we didn't have a way to get therapy for Emma, specifically someone who could come to the house, since Michael and I both needed to work. And my insurance was saying the closest covered therapy office was in Tampa!? I was working full time at the Sheriff's Office and Michael was working as a special makeup FX teacher on the week days that I had off. Sometimes he would take days off from work if Emma had a doctor appointment or I had mandatory overtime, so he really couldn't take even more days off for us to take Emma to an office for therapy, even if it was close by. So I reached out to Meredith, asking her if she knew of anyone, or a company that could help us. And she had the perfect solution!  

  She became Emma's personal therapist and started with us a month later! Woohoo! She came to our house (in Orlando) once or twice a week, for an hour. We worked out a very flexible schedule. Meredith told me that occupational therapy was basically the bridge between all the therapies, so she could work with Emma on anything we wanted. She did some great leg work with Emma until February 2021 when we had the Orthopedic appointment I had been waiting her whole life for, when Dr, Phillips finally said in his British accent, "Oh wow, yes, she definitely needs leg surgery!" At that point, we weren't supposed to put any added stress on her legs (bringing the bones together, since she doesn't have knee caps to keep them aligned) than she did herself. 

 I always like when Meredith worked on coloring, and Emma holding a crayon or marker in her hand. Emma is so big on throwing, but I want her to be able to draw nice pictures, even if those "pictures" are scribbles. Sometimes they kind of actually look like something and are worth putting on the fridge or the wall!

     Meredith had so many different great toys and bins full of sensory books (touch and feels animals with fur and such) or colorful blocks with "spikes" that stuck together. Clips that she put on Emma's clothes so she would have to use her finger muscles to get them off, or at least pull. At the end, of each session she would work a lot on getting Emma to put the blocks or clips back into the bin or bag. Eventually Emma started getting the hang of it instead of only throwing or pulling more out. She's a pretty good helper these days- in some areas. Sometimes Meredith would put little animal stickers on Emma's hands, feet, and face. Those were pretty easy for her to get off, but sometimes we'd still find one on her at the end of the day before during trach care- haha!

  Emma's very favorite therapy activity, which Meredith purposely, and wisely, saved for last as a reward, was.. the peanut!! It was this big bouncy thing- like an exercise ball, shaped like a peanut. It's really good for Emma to work her core and balance, and make sure she reaches out to catch herself if she feels like she is leaning or falling a certain way. A few years ago, when Emma was getting therapy at home through Early Steps in Orlando, she was getting OT with a really nice girl named Lisa, who also had a bouncy peanut (a smaller version) and Emma loved it then too!

This displeased look is probably because Meredith was saying, "All done!"

   Sometimes Meredith would let Emma keep some of the toys for a few days if she was coming back later in the week. Remember what I said about her throwing? This girl has an arm on her!! #softball

   One therapy day was spent working on shapes. She had a few books where you could take foam shapes out, and she asked Emma to put it back in. Then later she had one of those cute containers with the shape cut outs on the top and the toddler has to fit each piece correctly into the same shape. Sometimes Meredith would stay a little longer and we would just chat. During that time Emma would take advantage and snoop in the therapy cart! (It's still so interesting -and cute- to see her legs bent forward like that, now that it's been nine months since her leg surgery.)

  On Meredith's last session with us, she made a cool kind of tambourine "goody bottle" with Emma using two small soda bottles. She let Emma pick out all sorts of random pieces of fabric and ribbon and bells, then taped it up. Apparently she forgot that they made it, because when she was at our apartment a couple weeks ago she told me about the idea of making it. I pulled it out of the drawer and told her that Emma still likes playing with it! :)

   On a kind of unrelated note real quick, sometimes Meredith's mom would come to our house with her, but just wait in the car (in a shady spot) during the session. But on the last day she came inside and was cutting out a bunch of laminated pieces with Velcro for us to take with us. They were all themed- a bunch of great therapy folder pieces for Emma to have in Sarasota! I went to talk to her mom and saw that she had a dragonfly just sitting on her shoulder! So cool. Her mom is so nice- and funny too. Sometimes Meredith will read me some of the texts that her mom sends.

   When Meredith visited us at our apartment, before she drove home, she brought up a huge bin of therapy stuff! Full of all kind of books and bubbles, Crayons and watercolors. The bin of linking beads that Emma had thrown all over the living room, and a box of cute little farm animals. So much great stuff! Emma also got a hula hoop that she already loves playing with and guess what else? The peanut!! Her playroom at our new house is going to be Therapy Heaven! I really hope Meredith can come visit again soon. It was so great spending the day with her and I'm eager to keep working on our fun project together too! :)

   Before we moved to Sarasota in September 2021, I asked Nina (my next door neighbor bestie's mom, who also lived nearby) is she wanted to come over for one last Music Therapy session. She had done a few sessions with Emma before, singing songs to her. Emma liked the fast songs best. 

   We are so fortunate to have so many wonderful people in our lives. A lot of who we never would have met if it wasn't for Emma and her medical conditions that make her exactly who she was meant to be. 

   I've been texting with Meredith a lot recently and I absolutely love something she said yesterday, because it is exactly how Michael and I feel. This is a direct quote that she said I could post:
   "I like that [these photos] show her making progress. The scribbles she did in my notebook were all her. I give a huge raspberry to those who thought she wouldn't be able to learn. Is she delayed with her skill, yes; but what child wouldn't be with all the medical issues she dealt with at the beginning of her life. She never ceases to amaze me and she should never be underestimated!!!"