Winter Updates

   In August there was a medical conference where Emma's story was presented. Last month Winnie Palmer sent us their annual Nursing Magazine, which had a page talking about Emma and a few of her NICU nurses. Famous!! We also asked about getting a copy of the presentation from August, but nobody seems to know who has the video or how to get us a copy of it on a DVD.

    Emma has continued doing very well lately. She has been home for over 9 months now! She is becoming more interactive every day and playing with her Christmas present/ this standing toy thing. I thought it was funny how she fell asleep with her head back a few weeks ago, and then 45 minutes later she switched positions with her glasses pushing on her nose. She's actually "standing" in it now and was kicking her feet like crazy. I think she liked hearing her foot probe cord continually hitting the ground, so she kept doing it. It looked like she was tap dancing! :D

    We still have Physical Therapy at our house every Monday. She keept trying to have Emma work on being comfortable on her stomach. She doesn't seem to like being put on her stomach, but has rolled over to her stomach many times at night the past few weeks. Grace has helped Emma so much since August, but she's moving back up North at the end of March. This past Monday, her replacement (Lara- not pictured) was with her. Lara will become Emma's physical therapist starting in April.

    Another big thing is that we finally got Speech Therapy started 3 weeks ago!! I don't have pictures of that yet, but for the first session I was working and Michael was home. He said they asked a lot of questions, more to get to know her and what she can do so far. The second and third sessions, which I was home for, were more about the therapist (Christine) playing with Emma and trying to get her to pay attention to the toys and what is going on around her. When Emma does turn her head and focus, Christine says, "Yay, good looking!" She hasn't done any oral exercises yet, aside from moving a vibrating toy along Emma's cheeks towards her mouth. She would like us to get a swallow study done first before she tries giving Emma liquids or purees to make sure she won't aspirate, so I'm waiting for the specialty nurse to call me back so we can get that scheduled.

Mid January 2019 (scarf) VS where we were 1 year ago!! So much astounding progress!!

    One thing that has been a little scary-- well, not really scary since nothing bad has happened yet-- but I have been sick since last Friday. Michael and I are both worried that Emma could catch it and there is always that extra concern, especially with her fistula not closed all the way. I have been taking precautions by wearing a mask around her since I got home last Friday. My terrible allergies turned into post nasal drip, creating an actual cold with sore throat/congestion/ runny nose/ coughing. It is slowly getting better since I got a prescription Sunday night, but the cough is still lingering today. I have also been wearing gloves most of the time (especially over the weekend and earlier in the week) when doing anything with Emma or her medicines, and while mixing her formula. Emma has been kept in her bedroom all week in the back of the house, away from any germs I may create in the living room area where she normally spends her afternoons. Luckily, she is still taking Augmentin twice a day (she's been on that since December 2017!), but she has to stay on that until the fistula is completely healed.

   I've been still bringing home stacks of baby books from the library to read to Emma, but haven't read as many as before since I got my cough. But we are still enjoying that time together and I show Emma the pictures. I have read "Emma's Turtle" a few times because that was a cute one, as well as "My Heart" by Corinna Luyken which was about emotions. I also like "After the Fall" by Dan Santat, about how Humpty Dumpty got his courage back after his accident. We read that one yesterday.

  A few days ago we took our first trial run outside, using the Ventipack Mountain 3000!! Michael averages the total weight with the ventilator, battery, oxygen tank, and Emma to be about 40 pounds. I believe him, but I'd like to weigh it for real to see what the actual total is. We only walked about 30 minutes, but he said we might not be able to do as much hiking as we originally planned on our trip last month because of how hard the pack is on his shoulders. He's hoping he can adjust the straps so there is more weight on his hips instead. I might even try it out one day to see how far I can go. And then schedule a massage immediately after- haha!

   We also got Emma this fancy jacket for the mountains since she doesn't have a lot of warm clothes. At home she is perfectly fine in a long sleeve onezie, socks, and blanket. But in North Georgia it is scheduled to be in the low 50's during the day- and probably windy- so we all have to bundle up!
   Here are some super cute Valentine's pictures taken on Tuesday (plus those silly ones where she put the suction catheter on her face then looked surprised!) ~ We might do another Valentine's shoot on the 14th. I got that "new" shirt for her at Once Upon a Child last week, a 6 month size, which is what she normally wears in onezie sizes, and it doesn't cover her tummy! Looks like we might officially be at 9 month sizes when buying new clothes? Although she still fits into some of her 3-6 month stuff.

   That gold bow is the one I got from the gift shop at CS Mott Hospital in Michigan, which I used for her Baby New Year 2018 pictures. I'm glad it still fits!  
Her current stats from her  RSV shot:
>> 15 pounds, 3 oz
>>  24 inches long
>> 17 3/4" head circumference
 And a new super cute thing she started a few weeks ago is crossing her ankles like a princess!!

 Yesterday we had another Occupational Therapy appointment where Emma got bigger leg splints, including parts to keep her feet straight instead of doing the club foot thing to the side. She was crying during the appointment, but we think that was more about her being tired. She fell asleep at home about 30 minutes before we had to leave, but once we were home again and she got her second nap, she was fine wearing the splints. She did kick one off last night, but the other stayed on all night! :)

  I was doubting how much the splints were helping until I looked at these old pictures! Sorry for the doubts- I forgot how bent her legs were before!! Thank goodness for all my photo documentation. We're going back to Orthopedics next month to see if he suggests any changes, other than just keeping with the splint upgrades. :)