Everyone on social media has been talking for months about celebrating the holidays early since the last three months of the year bring extra happiness and the whole world needs that right now! As usual, we took Emma's Halloween pictures early. I was planning to make cards to send out to a few people, but am currently not in a scrapbooking mood, so I'll just post all of these now. Michael was a great assistant, playing with Emma and getting her to smile while I took the pictures. And it's not Halloween without several costume changes! So here are the ideas I came up with this year:
Main costume which will be used again later in the month: a cute little Bee!
Costume with a twist: a Spelling Bee
Using medical words of course. I feel the need to turn everything into a medical learning experience for our readers. I'll list all of the words we used and their definitions at the bottom of this post. I found this idea via Google Images, from a teacher who created a more fun, school-friendly costume for her students!
Medical Monster:
Thank goodness Michael helped me re-do these photos because when I originally tried doing them, Emma would not stop grabbing the headband and throwing it to the side, which took away most of the monster part of the costume. Michael also added googly eyes to her face the next day. In my first version I did put a little bit of purple and yellow eye shadow on her though and I thought that looked cool. Here are a few originals:
And here are the more advanced Medical Monster photos with Michael's help. I love the spiderwebs and other spooky touches he added too. The boxes behind her are all of the medical supplies we get for her every month. The photo with the head tilt is my favorite! :)
Boo-tiful Ghosts:
I thought about doing these ghost costumes last year, but then it felt too similar to the Mummy costume I wrapped her up in earlier in the week, so I dressed her up as Blood Window instead. She is the cutest Tiffany aka Blood Widow, and original too, as I doubt many other people have dressed up as her?! I would like to get some more Mommy/daughter ghost photos closer to Halloween.
Now here are all of the medical words and accurate definitions (not just my wording) that I printed out for the spelling bee photos, in alphabetical order, of course. Don't mind the different fonts and sizes as I copy and paste this information from various pages via the Internet:
Amoxicillin Clavulnate- The combination of amoxicillin and clavulanic acid is used to treat certain infections caused by bacteria, including infections of the ears, lungs, sinus, skin, and urinary tract. Amoxicillin is in a class of medications called penicillin-like antibiotics. It works by stopping the growth of bacteria. Clavulanic acid is in a class of medications called beta-lactamase inhibitors. It works by preventing bacteria from destroying amoxicillin. (Basically the meds that helps prevent her from getting sick and it has worked very well so far. It is more commonly known as Augmentin. It is normally a medicine that is only taken for a week or two, but Emma has been on this for almost 3 years, since the middle of December 2017.)
Bronchomalacia- a term for weak cartilage in the walls of the bronchial tubes, often occurring in children under six months. It means 'floppiness' of some part of the bronchi. Patients present with noisy breathing and/or wheezing. There is collapse of a main stem bronchus on exhalation.
Bronchoscopy- a procedure that lets doctors look at your lungs and air passages. It's usually performed by a doctor who specializes in lung disorders (a pulmonologist). During a bronchoscopy, a thin tube (bronchoscope) is passed through your nose or mouth, down your throat and into your lungs. Or in Emma's case, they put it down her trach.
Echocardiogram- a test that uses ultrasound to show how your heart muscle and valves are working. The sound waves make moving pictures of your heart so your doctor can get a good look at its size and shape. You might hear them call it “echo” for short. (Emma had several of these done in the first 6 months of her life, but not since then because her heart is good, although we learned in Michigan that she has an extra vein or artery (?) that most people don't have, so the doctors had to be really careful when placing her PICC lines. "PICC line" stands for peripherally inserted central catheter. Honestly, I can't remember what the correct word is for whatever extra thing she has in her body that leads to, or from, her heart. I will have to re-read the Michigan posts.. again! We got a lot of new information during those months.)
Esotropia- a form of strabismus in which one or both eyes turns inward. The condition can be constantly present, or occur intermittently, and can give the affected individual a "cross-eyed" appearance. (This occurs more when Emma does not have her glasses on, but the lenses were really scratched up when we took the pictures, hence her not wearing them. We did get new lenses put in the other day.)
Fistula- an abnormal connection between two body parts, such as an organ or blood vessel and another structure. Fistulas are usually the result of an injury or surgery. Infection or inflammation can also cause a fistula to form. (Emma got hers during the surgery for her 3D printed airways, which had to be sewn onto the outside of her trachea and bronchi. Unfortunately, the fistulas were unavoidable as her trachea is "tissue paper thin", which we did not know at the time. We are not yet sure if they are 100% healed yet.)
Gastrostomy- an opening into the stomach from the abdominal wall, made surgically for the introduction of food.
Genu Recurvatum- a deformity in the knee joint, so that the knee bends backwards. In this deformity, excessive extension occurs in the tibiofemoral joint. It is also called knee hyperextension and back knee. This deformity is more common in women and people with familial ligamentous laxity. (It is also a marker for some kids/people with Meier Gorlin Syndrome, although of the 26 other girls and women we are friends with on Facebook who have Meier Gorlin Syndrome, they do not have these backward bending knees. Also none of them have ever needed a trach and ventilator, making Emma that much more unique!)
Ipratropium Bromide- a bronchodilator that dilates (enlarges) airways (bronchi) in the lungs. It is used in treating, symptoms of asthma, colds, allergies, and chronic obstructive pulmonary disease (COPD) due to emphysema or chronic bronchitis. Ipratropium blocks the effect of acetylcholine on airways (bronchi) and nasal passages. Acetylcholine is a chemical that nerves use to communicate with muscle cells. In asthma and chronic obstructive pulmonary disease, cholinergic nerves going to the lungs cause narrowing of the airways by stimulating muscles surrounding the airways to contract. (This is a treatment that Emma gets every morning and night. Normally people use it by breathing in the medicine through their mouths, but Emma's connects into her ventilator circuit.)
Meier Gorlin Syndrome- a very rare inherited condition characterized by very small ears and ear canals, short stature, and absent or very small kneecaps (patellae). Other signs and symptoms can include hearing loss, feeding problems, respiratory tract abnormalities, small chin, and small head size. (Emma's hearing is perfect, according to a test done in August 2018 where she did not need to get tubes in her ears. Yay!! Also Emma's head size is large for her body. Her body is in a really low percentile, due to her dwarfism, but her head is on point for her age.)
Micrognathia- a condition in which the lower jaw is undersized. It is a symptom of a variety of craniofacial conditions. Sometimes called mandibular hypoplasia, micrognathia may interfere with your child's feeding and breathing.
Neonatal- relating to, or affecting the newborn and especially the human infant during the first month after birth (specifically for Emma, as she was in the Neonatal Intensive Care Unit for the first 323 days of her life).
Otolaryngologist- a medical specialty which is focused on the ears, nose, and throat. It is also called otolaryngology-head and neck surgery because specialists are trained in both medicine and surgery. An otolaryngologist is often called an ear, nose, and throat doctor, or an ENT for short. (Dr. Glenn Green at the University of Michigan is an otolaryngologist.)
Paralytics- sometimes called a muscle relaxant, is a category of medications that cause extreme muscle relaxation that renders most muscles of the body unable to move. (Emma was on strong sedation and paralytics for several weeks after her 3D splint airway surgery in Michigan.)
Pneumothorax- a collapsed lung. A pneumothorax occurs when air leaks into the space between your lung and chest wall. This air pushes on the outside of your lung and makes it collapse. Pneumothorax can be a complete lung collapse or a collapse of only a portion of the lung. (This happened to Emma twice while we were in Michigan, both times on the right side.)
Polycaprolactone- a biodegradable polyester with a low melting point of around 60 °C and a glass transition temperature of about −60 °C. The most common use of polycaprolactone is in the production of speciality polyurethanes. is also used for splinting, modeling, and as a feedstock for prototyping systems such as fused filament fabrication 3D printers. (This is the material that Emma's dissolvable 3D airway splints are made out of.)
Primordial Dwarfism- a rare and often dangerous group of genetic conditions that result in a small body size and other growth abnormalities. Signs of the condition first appear in the fetal stage and continue through childhood, adolescence, and adulthood. It is a form of dwarfism that results in a smaller body size in all stages of life beginning from before birth. (Emma's Meier Gorlin Syndrome has a full life span, compared to some of our other primordial friends who have MOPD I or MOPD II where the life span is only around 30 years.)
Pulmonology- an area of medicine that focuses on the health of the respiratory system. Pulmonologists treat everything from asthma to tuberculosis. (This is the doctor that Emma has to see the most, usually every 2-3 months.)
Thrombosis- the formation of a blood clot, known as a thrombus, within a blood vessel. It prevents blood from flowing normally through the circulatory system. Deep vein thrombosis (DVT) occurs when a blood clot (thrombus) forms in one or more of the deep veins in your body, usually in your legs. Deep vein thrombosis can cause leg pain or swelling, but also can occur with no symptoms. Deep vein thrombosis can develop if you have certain medical conditions that affect how your blood clots. It can also happen if you don't move for a long time, such as after surgery or an accident, or when you're confined to bed. (While in Michigan, Emma had this issue in her left leg due to a PICC line placement, and had to be given a shot every night to help thin her blood.)
Tracheomalacia- the collapse of the airway when breathing. This means that when your child exhales, the trachea narrows or collapses so much that it may feel hard to breathe. This may lead to a vibrating noise or cough. (It is often described as an oval "fish mouth" shape during inhale where there is very little space in the airway. Due to this condition, Emma was passing out up to 10 times per day when she was a few months old. This stopped once she got her 3D printed airway splints carefully sewn around her trachea and both bronchi.)
Tracheostomy- a medical procedure — either temporary or permanent — that involves creating an opening in the neck in order to place a tube into a person's windpipe. The tube is inserted through a cut in the neck below the vocal cords. This allows air to enter the lungs. (Not to be confused with a tracheotomy (no letter "S"), which is the actual silicone piece of equipment that goes from the stoma (hole) in her neck to her windpipe. She can breathe without the ventilator sometimes, but not without the tracheotomy "trach" in her trachea.
How smart do you feel right now after reading all of that!? Happy October!! :)
No comments:
Post a Comment