Archive for August 2012


Summer Sports and Another Seizure – August 4, 2012

Time has flown by since my last update on Ren.  It has been a busy summer for all of us, and especially her!  This summer, she is involved in:  swimming, baseball, music therapy, speech therapy, horse therapy, and now summer school.   I think she loves every one of the activities, too!  OH, and she also had her first try at bowling with us yesterday, and loved it.  She insisted on doing it all herself, and she did a pretty good job!  (See video below)

Speech is coming along slowly, as it has been.  She is starting to communicate more using words — one word phrases (sometimes 2-word phrases), but at least words.  Some newer words that she has added to her independently-used oral vocabulary include:  dirty, read, cereal (she says it a bit strangely though),  toast, house, marker, color, shirt, pants, socks, truck, van, where, money, right, suit (she will usually say “(pink) suit” to tell me what color swimsuit she wants to wear), and probably more that I can’t think of right now.   I should really write down all of the words she says and count it up.  I think I will do that for my next update.  Yes, she is five and going into kindergarten, but this is where she is at right now, and I’m glad to at least have her using more words to communicate.  She will still say “uh” and point, but I have been trying to tell her every time, “You need to use words” or “I don’t know what ‘uh’ means” and most of the time, she will attempt to use a word or words after that.  And, again, she is capable of saying 3, 4, 5, and even more word phrases/sentences when prompted or in a structured format, so it WILL come.   (When we read the book “Five Little Monkeys” she can say “No more monkeys jump-ing on bed” all by herself)  🙂

Speaking of, she can READ!  Well, she is learning to read, anyway.  I have posted videos in the past of her reading some books that we have practiced together, and we still continue to do that before bedtime, but recently my mother has been working with her, teaching her to read using an old Dick and Jane book.  (See video below)   Things like this – and things like how she will put together a 50-piece puzzle together with the pictures face down –  remind me of how much potential this girl has, and how smart she really is behind those limited verbal skills. She is very good at tricking people, too, in regards to this.  She had a new helper at horse therapy last week, and after the session, they asked “How does she tell you yes or no?”  and I said, “She says yes and no.”  And they were shocked.  I said she can say one or two word phrases, and sometimes more with prompts, and they exclaimed, “Well, we were working WAY below her level!”  First of all, before the session began, the helper thought she was deaf (I cleared that up right away), and then during the session, I think they were working on signs with her (not that there is anything wrong with that, but I think they thought she was a truly non-verbal child).   Because of her shyness, and stubbornness, and limited verbal skills, people often underestimate her and what she can do.  Those who know her, know better, though….!

And, speaking of, again, in a month, Ren will be starting kindergarten, and it is all bittersweet for me.  I cannot believe she is that old already.  However, it is exciting seeing my little girl grow and become more independent in her own unique way.   We have been using her stroller still when we go out in public, because her current wheelchair is SOOO heavy and cumbersome and takes up so much space.  HOWEVER, we are in process of getting her a new, lighter one, and I cannot wait for her to be able to be more independent out in public as well.   I will be sure to post something after she gets her new wheels.  🙂

On a not-so-fun note, last Tuesday Ren had a seizure.   It had been about 5 months since her last bout of seizures, and I was becoming hopeful that they would be subsiding and could start reducing her medication But, alas, she had one.  Thankfully, again, it was a “normal” 2-minute kind.  And, she did come down with a fever the next day, lasting 3 days, so it MAY have been triggered by being ill.  She is now fever-free, and seeming normal, so hoping she will be back to being seizure-free.  If she does have another one soon, they will probably have to look at increasing her meds again, something I do NOT want to do. Please pray for this.

Overall, Ren has been in good health, and as delightful as ever.  She just makes everyone so happy, and SHE is so happy too.  She is and always has been a life worth living.  As is everyone.  And she will continue to prove it.

Ephesians 2:10 – For we are God’s workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do.