Archive for November 2013


11/17/13 Changes

We had some big changes since my last post.  Which is why I have not written one for so long.  We moved from a Wisconsin suburban town to a rural 30 acres in Ohio in late July, and I truly have been trying to adjust…settle in…and primarily recover from this huge move since then….even now.

Unlike myself, Ren and her brothers have adjusted well to the changes.    Here is what has been going on with her lately:

*  We moved here with good friends, and their company is great, including the company of their little girl, whom Ren befriended immediately.  This friend, K, is two years younger, and this seems to work out well for Ren, as Ren acts a bit young for her age, and her delayed speech is not as big of a hindrance as it normally is because of this age difference.  They talk and laugh and play together often, and are hilarious to observe.  This friendship is a huge plus, as it makes her practice her speech in a relevant context and works on social skills as well, and of course having a good friend is good for anyone.

*  There is a Children’s Hospital 45 minutes away, compared to 2 1/2 hours away in WI.  Within about a month, we set up an ortho appointment because  her new AFO braces she got right before moving had caused major bruising and swelling in her knees, and this needed to be fixed.  The results of this appointment led to an observation by the sports medicine doctor that Ren’s knees were not in good shape.  They basically are too “loose,” as she demonstrated by moving Ren’s knees back and forth way too easily.  She  said that if this isn’t addressed soon, she may no longer be able to walk by the time she is a teenager, as when it gets too bad, it cannot be corrected.  By addressing, she means providing support for her knees through the use of KAFO braces.  These are braces that go up past the knee up to the thigh, in order to support her knees (hence the KAFO acronym meaning Knee-Ankle-Foot-Orthotics).  So, the new braces were ordered, and she finally has been able to wear them for the past couple of weeks.  And, they are a cute pink and tan color.

* Though nervous about sending Ren to a new school in a new state, and having to have new evaluations done for a new IEP (required when someone with an IEP moves here from another state), it has all worked out.  In her new evaluation, they gave her an ability (IQ) test.  This made me a little nervous, because I knew she didn’t always perform well for new people, as in usually does not show what she is capable of to them.  Here were the main results:

Speech/Language:  This fear of mine proved to be true for the speech/language assessments, as she scored extremely low on them.  However, the therapist administering the test said over and over again that she did not feel it was a true assessment of her abilities, because she had already been able to observe what Ren was able to do in the non-testing environment, and Ren was able to do the skills, just not in the way the test had asked.

OT:  She scored well in fine motor and other occupational therapy tasks and was determined to no longer need that service, except as a consult.   This means she’s getting better.  The classroom teacher even commented that Ren had the best handwriting in the class.

Ability/IQ:  I have always known that Ren was smarter than she seemed, at least how she seemed to others.  The things that she will think, say, or do will surprise us at times, reminding us that there is much more in that little girl than she is usually able to express or show.  Now, she did not score as a genius,  but she did score in the right smack in the middle of the nice average range.   At the meetings prior and up to this one, there was a staff member there who was in charge of the self-contained special education program, meant for those with more severe needs, with lower IQs.  She said at the end of that meeting, that she guesses this will be the last time she will see us, as she would not be needed for Ren.  Yeah, that’s right.  What makes me even happier is knowing that Ren maybe, just maybe, is capable of scoring even higher, because of her tendency to not do as well as she could on assessments, administered by people she may or may not know well.   Who knows?

Classroom and Achievement:  Ren scored well in reading/spelling areas, but quite a bit lower in math areas.  This was the case last year as well, and from what I have read, is relatively common in those who have hydrocephalus (the reason for her shunt).  She continues to do fairly well in all her classroom assessments (they assess all kiddos every 4 1/2 weeks and send the results home to parents each time), which continues to verify our decision to have her repeat kindergarten.  Oh, did I mention that we chose to do that?  We did.  Last May.  And had it put into her IEP.  This decision was not because of her academics, though she was a bit behind, but because of her speech and language delays.  We wanted to give her another year to close the gap, per se, of her language skills and that of her peers.  We know it will not even it out, by far, but we wanted her to have another year to try to catch up at least a little bit more.

Teachers:  I LOVE her classroom teacher.  She is so willing and wanting to work with Ren and help her, trying out a variety of things to get her involved and participating in the classroom.  (She continues to have difficulty with speaking in the classroom, but does fine in a small group outside the classroom – She takes after her mother ).  She emails me periodically to share her successes, and is just so great with her.  She actually sees her as “her” student, not as the special education teacher’s responsibility only.  And her sped teacher recognized right away how smart Ren is, and what she can be capable of doing.   The speech teacher seems good, and her physical therapist is the same one she sees outside of school as well.  Oh, and Ren was given the “ACE of the Quarter Award,” a few weeks ago, which is kind of like a Student of the Month award, for her hard work.

*  We are SO VERY MUCH missing the daily interaction, involvement, help, and support of her grandparents, my mom and dad, whom we lived by for all of her life (and then some) until now.  We are now separated from them by 11 hours, so an occasional weekend visit is not feasible.  This is such a HUGE missing piece in her – our – lives, and is more important and significant than I think some realize.  On the other hand, we do have closer proximity to Tony’s side of the family, so we can visit for a weekend – something we could not do before.

*  Though living out in the rural country has its bonuses, it makes it more difficult to access some of the resources and supports that Ren was able to have before we moved.  In WI, she was in a program (that she was on a waiting list for 5 years) that helped fund various therapies including horse therapy and music therapy.   She was also in a great adaptive swimming group and we had a group of people we knew whom had children with spina bifida (and other disabilities) that we could talk to and get together with.  Though I know there is a support group available here, it is about an hour away.   And, though it is nice to have the Children’s Hospital closer to us, it has been difficult establishing relationships with the medical staff there, partly due to it being new, but partly due to it being so big.

*  Our home is still in construction, and the nature of its structure and the mess around outside has limited her ability to move around, and practice her walking and etc, as much as she should.  I know this may be temporary, but it is a long temporary.  And, I’m just combining this one here – She has a long bus ride to and from school, about 40 minutes each way, so that bothers me a little.   And we have to drive her down our 1/3 mile driveway to the bus stop.  Ok, that is not necessarily a problem, just an extra inconvenience.

*  Also, an issue we have been dealing with since coming – which is not necessarily due to the move – is her AFOs and the big problems that have occurred from them.  I mentioned that her new AFOs caused swelling and bruising in the knees in the summer.  We had the orthotist here make some changes to her AFOs, so they would fit better and, well, not hurt her.   Shortly afterwards, one day after school, I took off the AFOs to check her knees, and her left sock was soaked.  I took it off to see a HUGE blister on the back of her ankle/leg area that had burst open, and there was  a big blister on her foot as well.  (See pics).  I assumed it was due to rubbing of the AFOs, but the orthotist worries it is an allergic reaction – to the glue in the pads, perhaps, or something.  The blisters caused a huge setback, as it took several weeks to heal, in the meantime not allowing her to really stand or do any walking because she could not wear any braces at all.   Though he has since replaced the padding, we are not using the AFOs much, partly due to fear of that happening again, and partly due to that they still rub into her knees a little bit too.  We are mostly using her KAFOs, which is fine.  They just are not as easy to take on and off.

*  Other than the brace issues, Ren is doing well.  Her speech has come a long ways.  At the beginning of the summer, we were excited to hear any kind of sentence longer than 5 words.  She is doing that ALL of the time now.  We are amazed at the vocabulary she uses too.  The other day she said, “I earned the I-Pad at school.”  Also, today, after I asked where she got the sticker on her shirt, she said, “I got it from Mrs. Seymore….I just wrote something….I clipped up…to purple.”  (Clipping up means she had extra good behavior, and/or did extra good work).  This coming from a girl whom I worried would never be able to speak, that whom I wondered if might have to learn sign language for her to communicate at all.     She speaks in sentences for everything, communicating everything.  It’s fun to hear her imaginative play with…everything.  One day she had two Cheetos “talking” to each other!  Oh!  And she is now singing!  For all of these years, she did not sing.  It was like she just couldn’t do it.  If she did a “song,” like the ABCs or a nursery rhyme, it was all monotone.  Now, her voice actually goes up and down in melody.  She is not singing real songs with words, just made up “la la la” type songs, but it is singing nonetheless.   Her sentences are still a bit choppy and not fluent, but that’s coming along.  She also still struggles with initiating conversations, falling back on certain phrases or even making up things when she gets uncomfortable or is not quite sure what to say or just gets too excited to express things.  She does this a lot when she excitingly tries to talk to someone but just cannot formulate her thoughts into words. (“Hey, Tracey!  Um…..” and then giggles or says, “I’m gonna go to grandma’s house….ok?!” and just does not make sense).  But, she shows over and over again how much PROGRESS she has and continues to make in her language skills.  So happy about it.

*  She also continues to be SEIZURE-FREE.  It has now been 15 months since she had any kind of seizure activity.  My hope is that after 18 months, we can think about decreasing her medication, and the ultimate goal would be to wean her off from it completely.  We are currently waiting for a neurology appointment to be set up, so we will learn more then, I hope.   I have continued to take her to cranial sacral therapy every few months too.

So, there you have it.  A really LONG yet long overdue update on Ren.  Prayers for continued good health, for her to be free from blisters and pressure sores and allergic reactions (if that’s what it was), and for her speech to continue to make leaps and bounds progress, would be fantastic.  Thanks!

Psalm 96:4  For great is the Lord and most worthy of praise…

Pictures from left to right (click on each to enlarge):  1) Ren and K “reading,” 2) new KAFO braces, 3) her blisters, and 4) a new stroller that comes in handy for moving her around on the land

Ren and K "reading" together DSC01145 DSC01045DSC01006