Update- Nov

It has been a long time since my last update.  Not much has happened over the last month.  The last MRI results showed no significant change which is a very good thing.  Cara is continuing to develop, grow and get stronger.  She still isn’t able to sit up on her own but she is improving in holding her head steady on her own. She is reaching out to toys and can even give mommy and daddy high-fives. Her endurance hasn’t improved much in the past few months but as long as she gets breaks and time to rest we get a good amount of play time.

We have just had a bad wave of a head and chest cold come through the house that hit all of us.  We washed our hands like crazy, sanitized door knobs and other commonly touched areas regularly and all wore masks but only held it off for 10 days and Cara started coughing.  She had a really rough couple days but after some antibiotics and a week of taking it easy she recovered with no complications.  Although she recovered alright this was a reminder of how much more difficult even a common cold is for Cara.  Because she has a disorganized swallow and a weak cough, nasal and chest congestion causes a lot of choking, vomiting and discomfort. She lost a little weight and it sucked a lot of energy out of her.  She is at a high risk for aspiration pneumonia which is our biggest concern. Luckily because of the g-tube we were able to make sure that she still got the nutrition and fluids that she needed.  There will be no traveling, flu vaccinations all around and a lot of hand washing during cold and flu season.  I can’t wait until spring.

We have started augmentative communication which is very exciting for us.  This will open up a whole new world for Cara.  The goal is to find a way for Cara to communicate with us in a way that is easy for her.  We are playing around with buttons she can push with her hand, head or feet and using her eye gaze.  Right now she speaks to us with her face, body language and cries but there is only so much that can be communicated without words. These tools will give her words and a voice.

In the next week or two Cara’s new equipment will be delivered.  She will finally have a chair that provides the proper support to allow her to work less and play more.  Sitting up even if in a chair with rolled blankets as supports is taxing for her, the more support the easier it will be for her  to play, interact and learn. The chair will have two bases: one for home that can adjust to various heights from floor to table and the second is a stroller base.  I can’t wait for all the experiences this will open up for her.

I completely forget what a “normal” 14 month old baby does.  Cara has become my normal.  I think back and see videos of Natalie at her age and it is so strange to me.  It feels like some sort of fictional movie. Crawling, walking, babbling, talking, eating, mama, dada, etc… all things that feel so foreign now. All these milestones that I once celebrated and see many other parents celebrating feels not real.  I use to get sad and so angry when I see other babies but now I just feel numb.  I don’t join in the celebration with my friends that are parents, not sad that I may never hear “mama”, not angry that Cara can’t follow her sister around and play.  Just numb. I don’t know what to feel most days. I always put the word normal in parenthesis in my thoughts as well as in writing because my normal does not agree with the rest of the world.  I don’t look forward to first steps and first words.  I look forward to test results.  I don’t get excited for baby playdates.  I get excited for a chair that will help Cara sit up. All of this doesn’t make me sad, mad, or glad it just is.

The older Cara gets the gap between her and other babies her age widens.  She is at the age now where she can no longer pass as “normal”.  People notice and we see the “something is not right” look in their eyes. I was going to blog on this subject but I will leave it to Dan.  This is an area that he has wanted to write about for some time.

We are still waiting on a diagnosis.  The next test result is due sometime in the beginning of December.  This will tell us if there is a deficiency in pyruvate metabolism. The frustration of not having a diagnosis is starting to go up again.


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