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:

LPA & the Potentials Foundation

   When Emma was officially diagnosed with Meier-Gorlin Syndrome by Dr. Mark Hannibal at the University of Michigan in January, we began reaching out to different organizations that we could become a part of for her. The first one we contacted was the LPA: Little People of America. Then we searched more specifically to find Sue Connerty who lives in the UK and is the president of Walking with Giants, which is for Primordial Dwarfs. Meier-Gorlin Syndrome falls under the category of Primordial Dwarfism. Since we live in the US, she put us in contact with Christy Jordan who is the president of the Potentials Foundation- the US version of Walking with Giants. We found out that the LPA was having a week long conference at the beginning of July in Orlando and hoped to go to it, but at the time (in January) I was currently scheduled to work that weekend and did not want to think about asking for time off in the summer while I was already using a lot of medical leave to be in Michigan with Emma for her experimental 3D splint surgery. Luckily, since Emma finally came home from the hospital on April 30^th, and I was able to take 12 weeks off to enjoy a “real Maternity Leave”, the LPA fell on my 11^th week! Originally Emma had a big surgery day scheduled (she needs to get her G-tube revised again and her hearing re-tested) for July 9^th and 10^th while the convention was going on. But a week before, the surgery got postponed and we were able to make it four of the days! Michael loves to remind me that God has everything under control, even if to me at first, getting an important surgery pushed back a second time, did not seem like a good thing.

   The first day (Saturday, July 7^th) was just getting registered for the conference and then waiting around for a Meet and Greet. Everyone was very friendly and helpful. Michael said he was nervous because he didn’t know what to expect. Our name tags had a special purple ribbon attached to the bottom that said “First Timers”. I guess Emma’s cuteness drew attention because a lot of parents would come over and start asking questions, which is super normal in a conference like this.

The second day we met with the Potentials Foundation, a much smaller group (pun not intended). Everyone went around and introduced themselves before Christy Jordan talked about the foundation, what we would be doing over the next few days, and then we played a BINGO game to get to know everyone. It was cool to meet a handful of the Primordial Dwarfs that we had watched documentaries on including Bri Jordan, Nick Smith, and Hannah Kritzeck. We ended up sitting at a table that had a 32-year old girl named Jenny with Meier-Gorlin Syndrome! We talked to her a lot about the condition, but also about her jobs and regular topics. She also does not have knee caps and walks just fine, so that made us feel good bout Emma, however this girl did not have the backwards bending legs. Jenny was also surprised that Emma had a trach because of the many people she knows through social media with MGS, none of them ever had a trach. That makes me wonder if Emma is the first? Another reason why a lot more research needs to be done for doctors to be aware- to help Emma or other kids with the same conditions. We all went out to dinner that night, which was paid for by the foundation! Christy told us that about 1/3 of the donations go towards bringing everyone together once a year and the rest of the money goes towards research. And research is definitely needed!!

The third day, Michael and I brought Emma back to the hotel where the conference took place for an hour-long meeting before almost everyone went to a water park. We did not go to that for obvious reasons: Emma having a ventilator and G-tube. So we hung out at home and ran errands before leaving the house again to meet all of the families at Olive Garden. That was a really good time again. We sat next to different people than the night before, which was great, because then we got to hear all of the different stories of struggles, hope, and achievement!

The fourth day/ yesterday (our last day going) was probably my favorite. Everyone met outside the Orlando Eye – the huge, slow moving ferris wheel – and then some people did the Sea Life Aquarium after that before grabbing lunch and meeting back at the hotel for a genetics workshop. Two of the other girls, Maddi and Loini, had gone to Islands of Adventure earlier and Maddi won a stuffed toy cat in one of the arcade games. When she walked in the room she asked us if it was okay if she could give the cat to Emma. I seriously thought I was going to start crying- it was such a sweet gesture! In the workshop meeting we met Dr. Michael Bober and Dr. McKenzie, the leading researchers in genetics and orthopedics in the study of Primordial Dwarfism. They work out of Nemours Children Hospital in Wilmington, DE. I felt good when Dr. Bober said, “Meier-Gorlin Syndrome is the healthiest type of Primordial Dwarfism.” At the end the genetic counselor, Angie, handed out Parental Permission Forms for Research Study so we could give consent for them to get copies of our kids’ hospital records that way they have more (updated) information about the various types of Primordial Dwarfism, including MOPD 1 and 2. The forms were voluntary, but I think everyone still signed them. I filled out two for Emma since she was seen in Michigan for a while too.

Side note: Emma needed a diaper change during the doctors meeting. Michael is more of the “mom” so he left to change it, and on the way to the bathroom he saw actor Warwick Davis in the hallway!! J

After that work shop we had two hours until our last group dinner, so a lot of people hung around to talk and say good-bye (or as we prefer to say, “see you later!”) if they were flying home early and wouldn’t be at dinner. One of the moms, Lori Everson, passed out copies of her book “Take Me as I Am” to everyone and of course we all asked her to sign our books! I can’t wait to read it. We got to talk to her and her husband, Tim, a good bit about their 5-year-old daughter, Harmony, who was always running around and dancing. Every story is so unique, and this weekend definitely created a bond stronger in person. Although the whole foundation only gets together once a year for the LPA conference, which is in a different state each year, they have “Chapters” where everyone within 100 (?) miles of certain cities meet up a few times per year. I believe there is one near Orlando that meets up in August. Michael and I will definitely go if I’m not working. Last time I was working and Emma was still in the hospital.

 ** If you’d like to make a donation to the Potentials Foundation to support Emma and our friends, please click this link to visit the Give page. **