I couldn’t relate. I summarized our year:
There really aren't enough words to adequately describe this past year. I began 2011 knowing that there was a small possibility that Juliana was not healthy. We spent most of the year in the dark before finally getting a diagnosis last month. And by "in the dark" I mean that it was truly pitch black, particularly in moments where I could do nothing to ease her pain and when I questioned whether there was any food that was safe for her to eat. It's been the hardest year of my life. But we are forging our own path and by the grace of God we are all still sane and healthy (or getting healthy in Juliana's case). I have been so fortunate to make some new friends who truly understand what we live day in and day out. We're thankful for where we are now but certainly hoping to see Juliana make even greater gains in the coming year.
As 2012 is coming to a close, I am excited. It has been a good year for Juliana. A brief timeline:
- In January 2012, she began to sit up unassisted.
- In March, I transitioned her to GAPS intro.
- Also in March, she began eating all of her food by mouth.
- In April she was released from the care of the neurologist. I am hopeful and optimistic that we will never have to return. (GAPS is a very effective anti-seizure diet).
- In May we began seeing our new Occupational Therapist who specializes in sensory work. These sessions have been really pivotal for Juliana and I am so thankful that we made this investment when she was so young. I also switched around every other therapy that we were doing, finally settling on three top-notch therapists (one occupational, one physical, one speech).
- In June she had her feeding tube removed, exactly one year to the day after it had been placed. I believe that she exceeded all expectations (including my own). We have never been back to see the gastroenterologist.
- Somewhere along the way, she began to do amazing things like pretend play. She picks up new signs easily (thank you, Signing Time). We see improvement in her sensory processing.
- In August, she learned how to transition herself from a prone to a sitting position.
- In October she began a rudimentary commando crawl.
- In November/December she began to string two words together (“Hi Mama,” “Bye Daddy,” “More swing”).
- In November we had a follow-up appointment with the geneticist. There wasn’t a whole lot to say, which was fine - no news is good news. I don’t foresee us going back again.
- In December she began a four-point crawl! She also began climbing steps (with some assistance).
Juliana continues to amaze us on a daily basis. She is observant, she is smart, she is communicative, she is engaged. She has a very good memory. She is quick. I read about (and sometimes see) kids who are slow processors, and this terms just doesn’t fit Juliana. For a long time I’ve said that her gross motor skills were her biggest delay. I believe this still to be true. Her speech is also delayed but lately she has plenty to say; it’s all in there, we just need to work on the articulation. Occasionally we will see a doctor who will ask me how much Juliana understands. Everything, I say. Which is particularly amazing considering that she has a mild hearing loss that we are continually monitoring. Overall, Juliana is very much like any other little girl.
I am hoping and planning big things in 2013. My hopes and dreams are so big that I hesitate to even speak them out loud. They include walking, potty learning and reading. I am also extremely hopeful that she will begin to eat an even more varied diet and that we will all be eating the same things together.
The other major theme of 2013 is something that I have been doggedly pursuing for the past year: balance. We’ve come to a place where our therapy load is manageable but I still do not feel that it is the best arrangement for us. I need more time with both of my kids and they both need more time being “normal.” I feel fairly certain that we will get there sometime in the coming year, but I am not yet sure what it will look like.
Here’s to a healthy and productive year!