Scarletts Story: Part Five

We spent the next three weeks doing all the normal things that one does when they get their baby home for the first time. Trying to find our groove in this new, sleepless routine. It was pure bliss.

Finally our follow up appointment with Dr. Rama came. We had also spent the last three weeks trying to find as much information as we could about Scarlett’s conditions. You would think that it would be easy in this day and age. Wrong. All I could find were in medical terminology. It was like trying to read another language. Dr. Rama could not believe how much Scarlett had grown since seeing her in the NICU. She asked us permission from the beginning, if we were okay with her students observing, and we most definitely were. Jim and I did not realize that this condition is fairly rare. Thankfully, we both felt the same way. Who were we to deny someone who is going into this field to see and learn from our child. If it could possibly help another child or family one day then it was not a problem for us. Scarlett received a good report. We were given a referral to an ocularist to start the prosthetic process.

The first appointment with Kathy was just a quick consult. She needed to see exactly what she was working with and develop a plan. She quickly set us up with our appointments for the rest of the year. We anxiously awaited our second appointment. At just shy of three months old, Scarlett was going to get her first conformer. Conformers are a contact type prosthetic that is thicker and made from acrylic. It fits over the micro eye just like a contact but is designed to help stimulate growth in the eye orbit as well as the eye lids. Nervous does not being to describe me walking into that appointment. Jim had just gone back to work after his paternity leave, so I was on my own.

I kept wondering she was going to get the conformer, also known as a schell, under Scarlett’s eye lids. It just looked huge compared to what we were used to seeing. I held Scarlett with her head in my lap. Her legs in Kathy’s, as she slipped the schell into place. Now, Scarlett did well until she realized that this strange thing she was feeling wasn’t going to go away. This is it, I thought. Magically, she stopped fussing and we went about our day. The conformer had a stem on it since it was so tiny. The stem kept her eye open just a little but allowed for the prosthetic to be taken out if needed since it was too small for the suction cup used for them.

The next month flew by. Before I knew it, Scarlett’s next appointment had come. Kathy was so pleased with her progress. As I sat there, holding Scarlett, Kathy took her schell out. When she turned back around with the new conformer it was so much bigger! She was able to easily pop it in place showing me how to do it with the suction cup. Scarlett handled it like a champ! Scarlett gets a new comformer at this point every month until she is one. At that point, she will get her first prosthetic eye. Kathy explained the first appointment that there would not be a need for us to take it in and out. If it came out somehow she had given us the tools to get it back in if needed. Man, did that suction cup come in handy (but that’s another post all together).

This is where our story is up to date. We have another appointment with the ocularist at the end of the month for a new conformer. We are having issues with insurance but that will be addresses in a post all of it’s own. Scarlett is thriving. She does tend to tilt her head to one side but that is common due to her mono vision. We are working with her on that as well as sitting, standing, and building over all body strength. She is happy and healthy. Scarlett also loves when her big sister reads to her. To put it simply, we are absolutely blessed.

In case you missed it, check out the whole series below!

Scarlett’s Story: Part One
Scarlett’s Story: Part Two
Scarlett’s Story: Part Three

Scarlett’s Story: Part Four

14 thoughts on “Scarletts Story: Part Five

Add yours

  1. Hi Raina!

    I just want to applaud you and your little family for being so strong in this situation, I could not imagine how that journey was for you. I have never sat and read through such an intense blog post mini-series that I was ignoring everything around me while reading it. Your writing truly is captivating and kept me clicking and reading. Scarlett is so strong and she has two amazing parents who were by her side through this and continue to be strong for her. She is a beautiful little girl! Congratulations.

    Thank you for sharing your experience and story. I will be checking out other blog posts from you and will follow your journey!

    CiCi | Navigation To Happiness
    https://navigationtohappiness.wordpress.com/

    Liked by 1 person

  2. I read all 5 parts in one sitting because I could not wait to see where you are at now. Thank you so much for sharing this! I cannot imagine going through something like this. Sending you guys lots of good vibes as Scarlett keeps growing! You have a beautiful family! 💕

    Liked by 1 person

  3. Raina,
    Read all five parts. All I can say is “God is good”. You are a strong woman and a good mommy to Scarlett. And Scarlett is a little brave warrior.
    Thank you for sharing your story and bring it to light, since it is a rare disease awareness should be made. We go through life without realizing or knowing that this kinds of conditions exists.
    I celebrate with you all the progress Scarlett has made and how precious she is. Much love to your family.

    Liked by 1 person

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