So any parent who has a child with a prosthetic will tell you that they are expensive. Even with insurance, you may end up paying a lot out of pocket for them as many insurance companies deem them not medically necessary (but that’s a whole other post). What I’m about to share is a fear of every parent who has a child with a prosthetic.
Momma Goes Back To Work
So, after being off work with Scarlett for a month, I finally found a job that fit with our needs as a family. Training was leaving me exhausted from cramming a ton of information into my already exhausted brain in a short amount of time. I was enjoying being home in the evenings while training lasted. I was able to cook dinner for my family. I was also taking advantage of spending time in the evening with Scarlett since training was almost over. My regular shift is from 10am to 7pm. So even though I get to spend some time with her in the morning, she is usually ready for bed soon after I get home at night.
Welcome Home, Momma
After an especially exhausting day of training, I was looking forward to being home with Jim and Scarlett. I walked in the front door and took off my 4 layers of clothes. It had been incredibly cold for our area that week and my 7 block walk to the parking garage was brutal. Thankfully, this particular day, my wonderful husband was off work and drove me to and from work. We ran a few errands and headed home. I hurried to the bathroom and changed into my pjs.
I quickly went and got Scarlett from my mother in law. Noticing her diaper seemed heavy, I placed her on the changing table. While changing her diaper, I noticed that her right eye looked off. Keep in mind, her right eye is her micro eye. The eye that requires a conformer to help the orbit grow and prepare her for her painted schell.
“Has her eye been this way all day?” I asked my mother in law. “Yes, ever since I took her for a little while this morning” she replied. We the discussed that she wasn’t opening her right eye very much, which was unusual since she got this new conformer. Being the ever curious momma, I gently opened her eye lids to see what was going on.
“JIIIMM” I exclaimed, “her conformer is gone!” When I opened her eye, her milky white micro eye greeted me in all its glory. So began the utter chaos and panic of realizing the $500 conformer she had only had for about two weeks is gone. The bigger question was how did it come out.
Now, for those of you not familiar with what a conformer is, let me give you a bit of information. A conformer is clear medical grade acrylic that has been shaped to fit safely over the eye. It is like a contact but thicker. She was on her second conformer so it was maybe a quarter of an inch thick to maybe just a little thicker at the thickest point. At most this one was an inch long if that. So we are talking about trying to find a tiny, clear object in a house that has four cats. Three of which are kleptomaniacs. All I was hoping was that is was shoved down into the couch or under it. I was praying that our biggest feline offender had not found it and stashed it in his super secret hiding place.
Photo by Jennifer Schneff Williamson. Used with permission.
I remembered her having it that morning when we fed her before I left. We started checking everywhere she had been that day. Jim was in full blown panic mode so I ended up being the calm one… on the outside, mostly. On the inside, I was freaking out totally! While Jim was moving the bed in our oldest daughter’s room, I was stripping the top covers off the bed in our room. We were co-sleeping with Scarlett at the time
We were shoving our hands into the couch, into the glider, on our hands and knees searching. We were using flashlights in the hopes that we would see the light reflect off of it. We searched her crib. We searched Emma’s bedroom. Everywhere Scarlett had been that day, we had pulled furniture out, looked under it, over it, and all around it. We were frantically searching. Both Jim and I were on the verge of nervous breakdowns. He went to check the couch one more time. I decided to check the bed again. I pull the comforter off first, again, and look it over then look at the floor around where I pulled it off. I did the same with the flat sheet. Next, I removed the 4 pillows one at a time. Still nothing. Suddenly, something dawns on me. When I checked the bed earlier, I straightened the towel, we kept flush with the bottom of the pillows, but didn’t check under it. I flung it back and saw my shiny little acrylic prize! “I’ve got it!” I called out from the bedroom. To say we were relieved is an understatement.
Scarlett without a conformer in.
How Do You Get This Thing In?!?!
We were so relieved that we had found the conformer that it took a few minutes for it to sink in. We, now, had to get it back in. Neither of us had ever actually put in one of her conformers or taken it out. Since she was getting a new one every 4 weeks or so, we had no need to take it out. Knowing that Jim is a bit more nervous about it than I am. I made the decision to take the lead. Momma was going to get this back in… maybe.
I start thinking of how Kathy, Scarlett’s ocularist, showed me how to put it in. Remembering how she positioned Scarlett between the two of us. I’m reciting how she told me to do it. Suction the tiny suction cup to the conformer. Lift the upper eyelid, place the conformer under the upper eyelid. Pull down the lower eyelid and let it slide over the conformer. Release the suction cup. Over and over through me head this is going. First, we place Scarlett with her head in Jim’s lap and her legs in mine. That lasted for only a few seconds because it was not an angle that I could possibly get it in. So we flipped her around. I’m looking down at Scarlett. The top of her head is up against me torso. I suction the tiny suction cup to the cleaned conformer and I’m going in. I was not able to get the conformer under her upper eyelid. No dice, ladies and gentlemen.
My mind is racing and I’m in full blown panic mode. I decide to place her on her changing table thinking maybe this will be the best angle. Jim had the step between the end of the changing table and the diaper genie to help keep her head still. I take a deep breath. My stomach is churning from anxiety at this point. A full blown panic attack is just under the surface. I can feel it starting to seep out. I take another deep breath and steel my resolve. I suction the conformer again, lift her top lid. I carefully slide in the top of the conformer. I’m so nervous I’m going to injure my baby. I’m holding my breath as the top eyelid slides down and hits the suction cup. I slowly slide the conformer up and pull her lower lid down. As Scarlett began to move her head, the suction cup came off the conformer. Oh no, I’m going to be able to do this. What are we going to do. She needs this in. Then a miracle happened. As she moved, somehow I was able to get her lower lid over the conformer. It was in!
We quickly celebrated, and then proceeded to sit down. We were both exhausted from anxiety and stress. Thinking we had lost the conformer and not knowing when Kathy would be back in town. We were panicking to the point I think we were both having major anxiety. I snuggled our baby girl and told her how good she did. During the whole time I was attempting to get her conformer back in she did not fuss a bit. When your child has a prosthetic, it is more than just an object that is expensive as far as monetary value. It is a medically necessary device that your child requires. While I share this to let other parents know you are not alone. I also want to remind you that when these situations happen, you have to find a point where you can laugh. Ours was once we calmed our hearts, which had been racing, and realized that if I had checked under the towel instead of straightening it we would have found it in the first five minutes of our search. Five minutes vs 30 frantic, heart stopping minutes.
Moral of the story: always check under the towel!