6-29-15 Eight Years Old, New Braces

I realized that I never wrote a post about Ren having another birthday!  What is wrong with me?  In April, she turned 8 years old.  She loves the movie Frozen, so she had several presents related to that theme.  She had a little party at our house with 4 girls from her class.  They played in her room, pet the baby chicks, jumped on the trampoline, ate cake, and opened presents.  Her Wisconsin grandparents were also here to celebrate with her.  I think she had a good time.

I know that she does not look 8 years old – she could easily be mistaken for a 5 or 6 year old.  However, this is fairly common with individuals with spina bifida.  Their legs just are not able to grow “normally” because they are not used “normally.”  I’m hoping for her to reach at least 4 1/2 feet some day.  ha

We had her IEP in May, and though not excelling per se, she has made enough progress for them to take out special education services in the area of math. They will keep some reading support because though she can decode at grade level (and beyond), her  comprehension skills need improvement.  However, it is difficult to know if this is a comprehension issue or a language issue sometimes, because when given choices to a question, she does fine. It is when she needs to come up with the words herself (retelling a story, open-ended questions, etc) that she has difficulty.  She will continue to receive speech therapy and adaptive PE, as well as PT.  The Assistive Tech staff member had Ren try out these power assist wheels.  They are a set of wheels that can attach to her wheelchair.  As the name suggests, they have an electric motor in them and give the wheelchair power.  So, she can do one push on her wheels and it will move her like 20 feet.  Pretty cool.  It will be helpful to have that when we have a lot of walking to do, like at a zoo.  The AT is working with our insurance company on ordering these, so hopefully they will come soon.  Though, with past experience, I would not be surprised if it took a few months…

About a month ago, Ren got her new braces.  I really like them.  She has her taller KAFO (knee, ankle, foot orthotic) on her right leg, because it is her weaker leg, and she has just an AFO (ankle, foot, orthotic) on her left leg, because that is her stronger leg.  They are hot pink and plastic.  Her last ones were made out of leather at the top, and they really did not look great after awhile AND I really do not think they provided her with the support she needed.  The new right one also seems to be stretching her back knee muscles, which is a good thing, because they are too tight; her leg cannot straighten all of the way out on its own right now.

It is summer break here….yay!  Ren is already busy with summer school in the mornings (a math class and a games class), and she has outpatient speech therapy once a week, as well as outpatient physical & occupational therapy once a week.  The speech is in a city 35 minutes away, and the PT/OT is in a different city in the opposite direction, 30 minutes away.  Our van will be getting extra miles in, I guess.   But, the PT will be good because they will do some aquatic therapy with her every other week.  Also, she does not get OT services in school, so this will help her refine some of those skills.  These visits have prompted me to have Ren start brushing her teeth while standing by the sink (see pic below).  Something little….yet big.

Other updates:  Ren has been weaned down from 5mL of seizure medication twice daily to 3 mL twice daily.  So far so good!  Her speech continues to make progress.  She still has this habit  of talking about things that are not real or that just don’t make sense.  Not sure if it is due to her great imagination (she is constantly talking to “friends” and usually playing teacher with them), or just her wanting to talk, about whatever…..or something else.  In any case, I still hope.

“The Lord delights in those who fear Him, who put their hope in His unfailing love.”  Psalm 147:11


New braces – Front view


New braces – Side view

Birthday Girl - Loves Frozen!

Birthday Girl – Loves Frozen!


Brushing her teeth








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