Local Daycations

   Michael and I really try to give Emma the best life, especially feeling the need to make up for all the time we “missed” with her while she was in the hospital for so long, especially on the days we had to work and maybe couldn’t visit her at all. I am so glad those days are behind us and we get to see her all the time now and give her 100+ kisses each day! Often I will continue to kiss her until she pushes me away, other times she doesn’t push at all. We were feeling adventurous this weekend and tried a few new things, including keeping Emma out longer than we are used to and taking her to do fun things during our few days with the LPA and Potentials Foundation conventions, rather than skipping it all together. That would have been no fun and I already feel like there are too many days when we just sit at home, like when Michael has to work, I stay home with Emma (and vise versa will begin when I go back to work soon).

  Since we were gone for about six hours the first day of the conference, we were reminded the hard way that Emma’s ventilator Sprint battery packs only last six hours (two batteries, each holding a charge for three hours). This was the first time we had been away from our house that long. Usually we just drive to a doctor appointment and back, only being gone maybe three hours. But with Emma’s ventilator continuously alarming and flashing “Power Lost” (once both batteries died) and then “Power Low” on our drive home that evening, Michael got the Ambu Bag ready incase the 25 minute battery inside the ventilator drained and shut off too! If that happened Michael would have needed to disconnect the vent circuit from Emma’s trach and hook the Ambu Bag to her trach and basically breathe for her by squeezing the bag as each breath. We were super thankful that it didn’t come to that and when we got home we quickly grabbed Emma and everything she was connected to, ran inside, and plugged the ventilator back into the wall outlet! Since then we began looking for available outlets in all the conference rooms and when we go out to eat that way we can plug in the vent and save the battery for when charging is not available.

This was also the first time we brought extra un-mixed formula and her equipment and medicine for her nightly breathing treatments. The second night of the LPA convention, we went with our group to Kobe Japanese Steakhouse. I assumed we would skip it due to the chefs cooking food right in front of you with their traditional flame attractions. With Emma’s oxygen tank being necessary, we couldn’t have her near the table while the chef was cooking. At first Michael suggested we just keep the oxygen tank in the car and hope she sleeps through dinner, but she woke up after 15 minutes and started getting squirmy, with her blood oxygen level dropping enough that Michael had to take her back to the car. Dinner this night was at 7pm and Emma normally gets her breathing treatments (nebulizer and inhaler) at 8pm. We had noticed an outlet in the lobby that was not being used, far enough from the cooking tables, and Michael took advantage that, but unfortunately missed most of the meal. I texted him when our chef and the chef at the table next to us were done cooking, so Michael knew it would be safe to bring Emma back in with the oxygen tank on the stroller. In the future, I would probably either avoid places like that, or go earlier, but it was worth a try!

Having the un-mixed formula was really simple and probably barely any different than what a parent of a regularly healthy baby would do. The only difference is that Emma has a couple extra ingredients: 6ml of pectin (pectin is normally used to make jams, but the gastroenterologist told us it could be used to thicken up Emma’s stools- kind of gross, but it has been working) and 1/8 teaspoon of Beneprotein per 5oz bottle. Mix, shake, and pour into her feeding bag. Easy peasy!

The fourth day of the conference involved a lot of fun toursity stuff that we hadn’t done in a few years. We met our new friend families at the Orlando Eye (a huge slow moving ferris wheel that was built three or four years ago). I guess for some reason they have a “no strollers” rule for each pod, but when Michael told the ride attendant that she needed it because of her ventilator, we were allowed on without a problem. Emma slept through this, but luckily woke up before we went to the Sea Life Aquarium. All of these adventures were paid for by donations given to the Potentials Foundation, which was so great considering we are really tightening down on our budget this month, and everything is even more fun when it’s free! **Most of the money donated goes towards research for doctors as there is very limited literature about these conditions, including Microcephalic Osteodysplastic Primordial Dwarfism (MOPD) 1 and 2, and Meier-Gorlin Syndrome, which is what Emma has.

In the Aquarium we had a dad ask us about Emma because he said his 3-year-old son had several surgeries and the same feeding pump (Moog EnteraLite Infinity). His son was not on continuous feeds like Emma is, but the dad lifted the son’s shirt to show us the Mic-key button in his stomach. We hope Emma can get that one next time. Right now she still has one with a 9-inch tube attached (even when the feeding bag tube isn’t hooked in). When the dad and his son went back to looking at the fish, a girl who was probably the older sister told us that we were really brave for bringing Emma out to do fun things. She said most people just stay at home with this much medical equipment, but we told her that part of doing fun stuff is for ourselves too. I don’t like sitting at home all day either! Plus we think its really good for Emma to be in a lot of different environments and getting stimulation by seeing things she doesn’t normally see. Mostly she seems to like looking at the different colored lights, but when Michael would scoot the stroller next to each area, Emma watched the fish, turtles, and sharks swim around.  We all had a really great time!!

The timing was really good for dinner the last night when we all the Potentials Foundation families ate at Unos. We got there at 5pm and this time Emma did sleep through the whole dinner and we were even home an hour before she needed her breathing treatments. The battery for her pulse-ox did die during dinner, but that is a lot less of a big deal! That monitor tells us her blood oxygen level (I call it the Happiness Level) and her heart rate, but by now we should definitely be able to guess her levels by her skin coloring and breathing anyway- and we can! I always remember her main respiratory therapist, Gary, telling us, “Look at her- don’t look at the monitor. You didn’t give birth to the monitor.” A slight issue at dinner was that there was not a ramp to get to the area down a few stairs where everyone else had tables reserved. I guess technically we could have picked up the stroller or gently guided it down the four steps, but we found another spot on the main level next to an outlet. Michael said, “Take a breath, it will be fine”, when I began stressing about the batteries running out –since by then it had been 8 hours since we left the house, plus a little over one hour of the battery being plugged in after lunch- but I insisted on plugging the vent in. I definitely didn’t want Michael having to use the Ambu Bag while we were at dinner! I’m pretty sure Michael was glad I put my foot down about that later because when we got home, both Sprint batteries were blinking orange, meaning they were almost out of juice!

Next time we will have to actually practice taking Emma out of Orlando for the day. That would involve bringing the big, blue oxygen converter that we always use in the house to ration the oxygen tanks. That would be if we are visiting my parents for the day which we would plug in and use at their house. Michael has bought a couple car chargers that plug in to the battery, but for some reason they don’t work in my cigarette lighters. I know they work because I use them to charge my phone and listen to music. Michael tried the charger in his car and it does work, but we always take my car because I drive while Michael sits in the back with Emma. Just a few more things to figure out before taking her on a real vacation!

** If you’d like to make a donation to the Potentials Foundation to support Emma and our friends with Primordial Dwarfism, please click this link to visit the Give page. ** I am currently updating this post with pictures now (August 27th) so here are few more recent photos as well: