In Other’s Words

Is everyone ready for Christmas? Or Kwanzaa? Or Hanukkah? Or whatever it is that you might celebrate! We just finished up opening our presents this evening as we are off to visit my in-laws for Christmas. It couldn’t have felt more right being in our own home, playing our traditional Vince Guaraldi Charlie Brown Christmas and learning about Christmas traditions from each others past. Lola was more interested in opening the cabinets in the kitchen rather than opening her presents, but we still enjoyed ourselves nonetheless. I’ll post pictures of our evening when we return, but I wanted to give you all an update on our girl.

Tonight This morning (I fell asleep hands on keyboard and all last night) I thought I would do something different and actually write the post-therapy notes that all three of Lola’s therapists left this week. After each session, the therapist leaves an assessment on what Lola accomplished and/or what she needs to work on. I have kept literally every single report as I think it shows how far Lola has come. Perhaps someday I’ll sit her down and show her these notes so she can see what a hard working and determined little girl she was.

Speech Therapy:

“Sounds : “B”, “M”, raspberries and “G”, Signs: signed “more” indepently with some production “M” paired with sign at times. Waved in response to “Hi”. Dropped toys in bucket, pulled self up at table and banged xylophone.”

Physical Therapy:

“Lola is now standing up everywhere. Cruising in crib and along furniture…not as well on floor as in crib. Has started walking in tall kneel. Did great in the walker today – did take some spontaneous steps although not in upright standing.”

Occupational Therapy:

“Lola is demonstrating dramatic improvements. Her ability to play with toys appropriately, utilize visual motor integration, understand/request and anticipate cause/effect activities have all improved. She demostrates increase in fine motor precision and finger isolation. She is communicating her wants and expressing emotions. Decrease to every other week due to progress and excellent parent follow through.”

As you can see, Lola had a great week! Ann Hughes from VIPS came over on Wednesday as well and she was so impressed with Lola’s progress. We went back to the Dr. Christine Roman-Lantzy CVI Range Rating Scale to evaluate Lola again. Remember she was at a high 4, low 5 (10 being the highest in visual use), but Ann was asking us questions all the way in the 7 – 8 categories. She has to officially tally up the numbers, but the fact we were even discussing abilities in the 7 and 8 range is simply miraculous!

Along with babbling, standing up all over the house (which is really bizarre to see) and playing appropriately with toys, Lola is beginning to try to feed herself her bottle. She is also attempting to feed herself finger foods and she has started to refuse to eat anything Rob and I actually feed her with a fork or spoon. We try to let her do it, but she bangs it like a drumstick which proves to be quite messy. I have to say, I was really flipping a little shocked when Rob told me Lola’s OT would be coming just every other week starting at the first of the year. I’m not discrediting my kids abilities, but Lola has been in early intervention since she was four months old and I just assumed she would need weekly therapy until she aged out at three years old. I knew she was progressing rather well, but I didn’t expect her to essentially graduate out of intensive occupational therapy. I know I’m emotional as it is, but I fought back tears when Rob told me the news. I was just so proud of Lola…and I mean so proud.

I often say to Rob how lucky I feel that we get to hang out with Lola all of the time. She has this pseudo kid celebrity status and everyone is always inquiring as to how Lola is doing and what she’s up to. I feel incredibly blessed to be on this journey with her and I know that while she has her challenges…she is going to keep on surprising people. I learned early on in this “special needs” world not to stop dreaming big for Lola. I treat her as if she could be the President of the United States, an astronaut, a teacher, a gardener, a business owner or whatever it is she may want to do with her life. I expect she will go to dances (although she may not want to if she gets my dancing skills), she will go on to college (if she chooses), she’ll get married (not if Rob has a say) and she’ll have a kid of her own (wild to think about being a grandma – eeek).

I think I’m sharing all of this because I’ve recently had a lot of new followers who have young children with similar conditions, symptoms and challenges such as Lola. I can remember how frightened I was in the beginning of this journey. Everything was scary and unknown. The Internet basically suggested Lola would never be independent and it was hard to find updated stories about kids with West Syndrome or Cortical Visual Impairment. I know many nights I am one tuckered out mama and when I don’t post it is exactly for that reason…I am tired. But even with a brief absence, I will continue to document Lola’s journey as it’s important not only for us, but more importantly for others. Nothing is more scary than finding out your child has a condition or illness especially one you can’t just fix with medicine. I never thought I’d be the one giving others advice or hope as I was red-hot mess in the beginning. But it gets better and I promise there will be a day when “West Syndrome” or whatever diagnosis (or no diagnosis) isn’t the first thing on your mind when you wake up in the morning. Give it time to sink in then figure out how to move forward and remember not to keep looking back (Was it something I did in the pregnancy?). While I’m busy these days, I always have time to answer an email from a concerned parent or worried guardian or someone who is simply curious about Lola. Please don’t hesitate to write.

I’m off to work now…Merry Christmas everyone!!