Doctor Appointment Day

   I was very happy on Thursday (September 27^th). Michael doesn’t like doctor appointment days (many of them lately have been quick and pointless and take away a day that he could be working), but I was telling him that I was enjoying the day. He has been letting me know over the past few weeks that it makes him sad that I don’t talk to him much. Anytime I think of something to tell him, it’s when we aren’t together- while at work or on my drive home- and I don’t want all of our conversations to be via text, but when I get home from work my brain and body begin to fall asleep and I just want to watch TV (Bones now since we finished Rookie Blue last week) until it’s time to do Emma’s treatments, get my shower, do her bath and trach care, then we all go to sleep. But on Thursday, since we were together all day, while I was driving us around, all those stories and notes came to mind and we had many conversations. We laughed together and complained about the same things- in a good way, being in agreement. Sometimes I get cranky because I don’t see him enough. Since we trade off days of who works & who stays home with Emma, the person at home feels cooped up and often eagerly leaves to run errands/ get food/ go for a walk shortly after the other person gets home. 

   But on Thursday I was happy to have a family day. This is another full day that I wanted to document for you, so you can follow along with what we do:

Last week, on a day I was working, Michael switched everything in Emma's room to my scrapbook room for more space. I'll put more details in another post about that later, but wanted to mention it since her smaller bedroom walls were gray and now she's in the bigger white and coral room!

After her treatments we get her changed, hair brushed and put into a ponytail. It's getting very long, but I recently discovered that a portion of the back is short due to her not being able to sit up on her own yet. She often shakes her head and we find hair in her crib or on the swing.

  I clean out the suction machine again, fill up her formula bag, and get the car turned on so the AC is blowing cold air to the back by the time Emma is put into the car.

Emma's ready for a ride!! Once Michael is in the car and everything (oxygen tank, ventilator, battery packs) is unhooked from the stroller, I put the rest into the trunk.

Notice Emma's Farrell bag hanging from the hook above the window. The bag always has to stay above stomach level to make sure it drains properly or doesn't get formula going in there. It's mostly just a gas bag for any air and bubbles to release pressure from her tummy before they travel South and come out as farts. (Ha!) Also we see formula go into that bag if Emma coughs a lot, but then it drains back into her stomach. The photos below are to show how Michael keeps the equipment stored in the car while we're driving around.

 Can't leave the house without a Red Bull! And here (below) is Michael putting everything back together when we arrive at the first doctor appointment- ENT (Ear, Nose, and Throat). Hooking the oxygen tank back in to the purple wooden attachment he created and the portable ventilator battery packs sit in the space under her car seat bucket.

 The suction machine, Ambu bag, and ventilator battery (wall plug in) are stored under the stroller.

 Michael was standing to the side to block the sun from Emma's face when we were not walking in the shade. Such a nice and considerate Daddy!

 Watching Daniel Tiger and playing while waiting for our doctor appointment.

 Getting her monthly weigh-in. Check out that grip!! Current weight is 14.6 pounds. And her temperature is almost always in the 97 degree range, usually 97.4 - 97.6 degrees. :)

 When the post-op check up was finished, we waited in the lobby and watched a Sesame Street episode about hurricanes while waiting for the nurses to fill out my FMLA insurance renewal papers for work. We had over three hours between doctor appointments, so instead of going home for a little bit, we ran errands. Emma got to experience all of the glory of Hobby Lobby this day!! I think she was impressed.

 Michael was looking for letters to spell out her first and middle name to hang up above her crib on the coral colored wall. They didn't have what Michael was looking for, so we went to JoAnn Fabrics next and found what we needed.

 Being silly and playing with the decorations!!

  One thing I don't like about having to get gas for the car while Emma is with us is because the car needs to be turned off and quickly gets so hot - especially in the late summer in Orlando! Luckily this day she did better than the last time. She didn't cry or cause her alarms to go off, but I still held the fan for her while Michael was checking something under the hood of my car.

Napping before the next doctor appointment.

 Once we got to the second appointment for the day, Michael was able to put new fuses in my car and demonstrated that the ventilator car adaptor worked, being able to charge the ventilator batteries while driving around. And it was perfect timing because the batteries ran out (vent alarming "power loss") as we got in to the Occupational Therapy room.

 The Occupational Therapist and an intern using the Forma Splint Thermal Bath with very hot water used to soften the splints so they can be bent a little bit more at each appointment (once a month) to increase flexion in her legs, slowly bending them the correct way.

 In this photo below you can see the ventilator battery- we had it plugged in to the wall for the 40 minutes we were there, then used the car charger on the way home. Daddy cleaning her glasses with the anti-fog Z-wax that he keeps in the stroller.

   So that is basically how our doctor appointment days go. We try to schedule two in a day, twice a month, instead of one per week. In two weeks we go see the pediatrician and surgical again, to get her other G-tube put in. Last week I read a new favorite quote on someone’s Instagram ~ “It was one of those days where everything was perfectly right. Happy kids, beautiful weather, and a good husband’s hand to hold.” That’s what kind of day Thursday was for me! I’ll look forward to the next doctor appointment. :)