Ophthalmology

   While looking through my previous posts from May and June I realized that I never posted anything about Emma's eye appointment and getting her glasses. Sometimes I feel like we are terrible at organizing Emma's pictures and I can't find some months or they are mixed in with other random pictures, so it took me a little bit to find her pictures from her first (out-patient) eye appointment on May 29th. This is another reason why I like to blog and post a lot of pictures on Facebook, in case I can't find them in other places when I need them later.
   Part of this will have to be information from the Internet since I do not fully understand how a doctor can look into an 11 month old's eyes and determine that they needs glasses. Michael asked the ophthalmologist last week what he checks for when looking at Emma's eyes, but the answer did not really clear up anything for me since I am not an eye expert. However, I still wrote down that he said he uses the retinoscope. When talking to her doctors I often want to borrow a quote from The Office and say, "Explain it to me like I'm a 5 year old." The main thing I remember him saying is that he was looking at the optic nerve and saw that it was short, meaning she is far sighted, so her glasses help her see things up close. He also said, "The rest of her is short, so it would make sense that her option nerve is too" but, to me, that does not seem like a real thing.. I think my mom is far sighted and she is a lot taller than Emma!
   These are pictures from Emma's first appointment on May 29th ~ She looks so young! :)

   After this appointment we picked out her frames. Michael has a better fashion and decorating sense, so he narrowed it down to light blue or light purple for her glasses colors. They had about 20 colors to choose from. I liked the light pink, but in the end, the light blue looked best against her skin tone. I was worried that since our medical insurance does not cover glasses, that it would be about $700, but I think it was about $150 for the frames and lenses. Our neighbor laughed at us when we said our insurance doesn't cover glasses since Michael and I both wear glasses full-time. Well I do, I don't know why Michael doesn't wear his all of the time. I think he is even more handsome with glasses! :)
   On the wall was a framed diagram and at the bottom I saw a drawing of a kid with one eye facing forward and one eye facing in towards the nose. Under the drawing it was labeled "Esotropia". That is what Emma has in both eyes and the glasses are supposed to help correct that. She got her glasses on her birthday (June 12th) and it has seemed to help with the eyes switching which one faces in, or her simply going cross-eyed, but only while wearing the glasses. A good chunk of the time she is not wearing glasses (at night), her eyes are all over the place! I have lots of photos of her displaying her Esotrophia. She also has Anisocoria, where her right pupil is bigger than the left. In Michigan, they thought it was a result of her cardiac arrest and needing emergency drugs, but I quickly told them that I also have that "condition". I noticed it one day, about 10 years ago. To me it has no effect, except that my right eye can see a little bit more clearly at a distance? I'm nearsighted though, so that makes us different.
   These are pictures from Emma's recent appointment on October 16th:

   Here is (word for word, from ForLittleEyes.com) what I just found about how it works ~ The retinoscopy was an objective refraction. It looked at the shape of her eye to see how well she could focus without requiring a response from her. Much of how clearly a person can see is related to the shape of the eye and where the lens of the eye focuses the light. If you are hyperoptic (farsighted), light focuses behind the retina. So understanding how the eye is shaped and where the light is focused tells the eye doctor what shape corrective lenses need to be to get the light focusing in the right spot.
   This time he did tell us that it looked like Emma's eyes have changed 10% since May, meaning 10% of the time she will have to use the eye muscles to focus where the glasses don't make everything perfectly clear. He says at the next appointment in February he may need to change her lens prescription. Emma did very well following the sparkle ball (it looked like a 4th of July toy) as the doctor moved it back and forth, up and down to get her to move her eyes around so he could see into different parts of her eye. We are so proud of everything she does and is learning. Our new thing lately is when she is laying down, we put our hands out for her and she grabs on to our hands (versus just laying there staring, like, "What?") so we can sit her up or pick her up.

It's Halloween, Baby!

  I am feeling very happy today!! The perfect amount of satisfied, laughter, and bliss on my day off from work. I have always loved dressing up and having photo shoots, and now, having this adorable little girl to do them with, makes me very happy. Also half-watching and listening to Pitch Perfect 3 in the background put me in a good mood too. I love all the songs on there.

 I knew I wanted to get pictures with a bunch of Halloween decorations around Emma. I needed to put them around the house after Michael went through the trouble (and perspiration!) of getting them out of our attic in the garage. Most of the photos are without her glasses because she seems to prefer not wearing them, even though yesterday she made a pinky promise to the pediatrician that she would! He said he had four eye surgeries and he still has to wear glasses. We would definitely love for Emma to have as few surgeries as necessary. We are already up to... Five in 16 months. (I realize that some people who truly understand what we are going through might say we are lucky that Emma has "only" had five so far, but five is a whole lot more than zero for so many perfectly healthy children.)

1. Tracheostomy (trach) ~ July 31st, 2017
2. Nissen & Gastrosomy Tube (G-tube) ~ September 7th, 2017
3. 3D Splint Placement (Michigan) ~ December 27th, 2017
4. Trach revision (Michigan) ~ January 2018
5. Gastrostomy revision (out patient) ~ August 27th, 2018

   This is not even counting a ton of bronchoscopies in Michigan and at least one in Orlando, several CT scans, echocardiograms, a lot of Xrays, trachea fistulas, and way too many PICC lines inserted. A blood clot in her leg and so many shots, blood transfusions, being put on deep sedation and paralytics for weeks at a time, "enough medicine to knock out a grown man" (for real that's what they told us) and then her body resisting many of the antibiotics that are made to help her. Extreme prolapse from her G-tube stoma, air tubes and chest tubes due to lung collapses, two cardiac arrests at six months old, the first one lasting 9 minutes!! And the doctors have still been talking about so many more surgeries already. Jaw surgery, eye surgery, rib expanders, we're still not sure if she will need leg surgery since she kicks her splints off so easily.
   That is a lot of very scary stuff!! But it also reminds us how fragile Emma really is, how important it is for us as parents to keep her safe and as healthy as possible, and how lucky we are to have her with us at home. I need to go back and read these NICU blog posts because I even sometimes block all the bad experiences we went through and forget how many times we were so close to losing her. How my Maternal Fetal Medicine doctor was so sure that she would be "incompatible with life", and me sobbing alone in the ultrasound room on May 18th of last year, six weeks before her due date. All I could think about were the pretty clothes hanging in her closet that she'd never get to wear. Maybe that's why I buy so many outfits for her now.
   Anyway, let's all take a big breathe of fresh air and say a million more thank you prayers to God. We always believed in God before, but how could someone not believe in God after a bunch of doctors look at their scientific facts and say, "How is she still alive? It shouldn't be possible.."
   Phew!! *wipes a tear away* Here are bunch of super cute pictures with the happiest smiles!! :)

 *Emma's suspicious look*

 And for a few decoration close ups, because I have to be a bit extra creative when using the Canon!

 It's not Halloween without Blood Widow!! (More movie photos about that HERE.)

Doctor Appointment Day, Part II

   I feel like I will end up having five doctor appointment posts, each with two speciality doctors. The Part 1 post included ENT (ears, nose, and throat) and OT (occupational therapy), although that is more about getting her leg splints made and adjusted and does not involve any actual therapy movements. Yesterday we went to the pediatrician and then to her surgical appointment.
   The past two nights Emma has been sleeping so well that her heart rate drops to 64 beats per minute and her alarm sounds until it jumps back up a few seconds later. A couple times we went into her room to make sure it wasn't another issue because the alarm sounded more than twice. But she was just sleeping very well and even stayed asleep when I did her treatment at 7:30am.

 We got to the pediatrician for our appointment at 9:20am. The main entrance is by the parking lot and has stairs, but Emma's way is through the door closer to the road because we get to go straight into a room and don't have to wait in the lobby near any kids that could have germs. We like that! :)

 She got weighed again, then measured. 14 pounds, 9.5 ounces, 23 inches, and a head circumference of  18 inches ~ She's growing!! We accidentally forgot her glasses this morning because they weren't on her dresser like they normally are and by the time we realized it we were almost at the appointment.

  A lot happens at the pediatrician, probably because he checks everything and is not only focused on one part of the body. He says that her lungs sound the best he has heard for a kid on a ventilator! He is good about listening to what we say and after he asks a bunch of questions, then repeats back everything we just talked about, as a recap. However, he did mention that we should take Emma to the dentist so she can get fluoride and to make sure her mouth is clean considering she has 16 teeth already. All she's missing are her 2nd molars! He gave us the name of the best pediatric dentist in Orlando.

   He also asked if we had talked to anyone about Emma getting jaw surgery, but we have not and that is not something that Michael and I feel is necessary. Her mouth definitely looks suitable for eating, once she learns to do that. The only person who has mentioned her jaw before was the geneticist in Michigan, but he only pointed it out and said she may have gotten that from my genetics because he said my jaw is back(?) too. So if mine never got fixed- aside from any movement while having braces- then Emma doesn't need jaw surgery either.

  She was a big girl and handled her shots well, although she did make her loud, extra sad cry compared to her cry that is silent. She had to get shots for Pentacel, flu vaccine, and the one against MMR (measles, mumps and rubella). They also had to prick her finger for a Hemoglobin reading which was needed for her updated WIC records. We get her super expensive formula for free through WIC.
  The pediatrician gave Michael and I some homework: to go on 3 dates before the next appointment in January, including receipts and pictures. We have not been on a date without Emma since she came home five months ago. Michael's 30th birthday is tomorrow, which would be a great thing to dress up for and celebrate. I'll have to contact our nurse friends to see when they are available! :)

   The surgical appointment was scheduled for 1pm, but while we were walking around in Target to kill time, the office called asking if we wanted to come in at 12:15 instead, so that was nice. From the window in the pictures below you can see Winnie Palmer (Emma's NICU hospital). Emma used this time to take a nap. She takes mini-naps on doctor appointment days, then takes a long nap at home.

  This appointment was frustrating yesterday because they made me fill out the packet of Emma's life history again. (It's a long history for a 16 month old girl.) That felt like such a hassle when we went to all of the out-patient offices for the first time in May, especially when she had 8 doctors and she was on more medicines then. She seems to gets a new doctor added each month. I couldn't recall filling these papers out at the appointment last month, but they switched offices in August -- so they shred every patient history?! Then the front desk lady said they didn't have her pediatrician's name on file, so I told her the name, but then saw it on the papers she handed me. When another girl called us back she said, "Why did they make you fill this out again?" Ugh... It was more frustrating when we found out that we were there "just to talk about Emma getting a G-tube" when we thought we were there for her to get it!! (The yellow one she has now is more of an after-surgery place holder until we get the real one.)

   The doctor was out of town so we didn't even get to talk to him.. The nurse said we would have to schedule an appointment in the ER to get the G-tube in two weeks, but if we want the Mic-Key button, which Michael does, then we might have to talk to the doctor at the office again so he can measure her abdomen wall and see which size button she needs. So now we're waiting for her to talk to the doctor and then call us about what we're doing and when to schedule the next appointments.
  On the way home we stopped by a work friend's apartment. She met us downstairs to give us two cans of EleCare formula that she had left over that her son didn't use. She and I were pregnant at the same time, her son was born in August last year. She has been so kind to keep updated and texts me every so often to see how we are doing. She texted me a lot while I was in the hospital in May before Emma was born and sent Emma Christmas presents in Michigan. Thank you, Valeska!! :)