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

OLYMPUS DIGITAL CAMERA

New braces – Front view

OLYMPUS DIGITAL CAMERA

New braces – Side view

Birthday Girl - Loves Frozen!

Birthday Girl – Loves Frozen!

OLYMPUS DIGITAL CAMERA

Brushing her teeth

 

 

 

 

 

3/13/15 – Spina Bifida Clinic

Ren recently attended the Spina Bifida Clinic for the first time at our new area hospital.  Overall, I was impressed ~ There was a lot of information shared and lots of positives, I felt.  I will try my best to summarize it all!

Urology:  Ren had an ultrasound on her bladder and kidneys.  Everything looks great, and so everything is staying the same. No news is better than bad news!

Neurology:   This is probably the one with the biggest news.  Because Ren has been seizure-free for more than 2 1/2 years, the neurologist – with our  approval – set up a plan to try to wean her off of her seizure  medications.  She said that this is something that can be tried after being seizure-free for at least 2 years, to see if the body has “outgrown” the seizures.  She has seen this happen successfully….and unsuccessfully.  But, the only way to find out is to try.  Of course, pursuing this involves the risk of her having a seizure.  If her body truly has not outgrown the seizures, then reducing her medication may cause a seizure to break through.  If this happens, then it becomes clear that she still needs her medication.  There is the slight risk that just going back to  her regular does of medication may not be all that is needed, so that leaves another unknown.  However, I have read in SB group forums about other individuals with SB who had seizures when they were young, and they did outgrow them and no longer have them as adults.  We are a little nervous about this, but excited too at the possibility that she could be done with seizures AND with medication.  We are taking it slowly, gradually, over the next 10 months.  We started a week ago, and so  far all is good.

Orthopedics/Physical Therapy:
The therapists were in enthusiastic agreement about her potential to be able to walk with fore-arm crutches in the future.  This is the first time that I feel we have had this overwhelmingly positive response, and so that was exciting for me! I brought up some of the concerns from previous doctors about her ability to do this, and they  had counter-responses to each of them, to the point where I was satisfied.  It is so nice to work with staff who are so positive and have great expectations for our daughter.

Ren will also be getting new KAFO braces, since she has outgrown the ones she has.  Wait  – let me rephrase what she is getting – She will be getting ONE new KAFO, and the other brace will be an AFO.  In other words, her right leg will keep the taller brace that goes above her knee, but her left leg, because it is so much stronger, will just have the shorter brace, which goes only up to her calf, like what she originally had up to a year and a half ago.  Their hope is that she can eventually go back to both legs having the AFOs, because they are lighter, less cumbersome, and ultimately because of this, may make it easier for walking.  They will be HOT PINK.  (She almost picked dark purple, but those were too Minnesota Viking for me, so I reminded her about her first choice of pink).   :)   However, a slight obstacle right now is that her right foot is beginning to turn outward.  To fix this, they want to do a small surgery on her foot.  After this surgery is completed, then they think it will be easier to work on strengthening that leg up enough to move to the AFOs, and also then focus entirely on walking with the crutches.  We are electing to wait until the fall to do this surgery – for various reasons – so in the meantime, we will get the new HOT PINK braces and work on her torso  strength somehow, as that too needs to happen in order for walking to happen.  I think T is thinking of making new parallel bars for her to work out on.  (Right, T?)

The other news from orthopedics is that, as you may know from the past, she has a fractured growth plate in her left knee that previous doctors have shown concern about, saying it could cause complications in the future.  The last orthopedic surgeon even went so far as to say this would prohibit her from ever walking with arm crutches, because it would grow abnormally.  (This was one of the concerns I mentioned to these current doctors).   The new orthopedic surgeon showed us the x-rays and pointed out that there IS still growth occurring in the knee, for sure on the sides.  The front does seem to have damage, but so far it does not seem to be hindering her growth. He did say that we would still need to monitor it, but  he seemed optimistic about it overall.  More good news!

Occupational Therapy:  The OT did an evaluation on her and suggest she receive OT services each week.  This is interesting, since the school evaluation said she does not need any.  We will see if anything comes from this or not…

Speech Therapy:  The speech therapist also did quite an extensive evaluation…..we awaiting those results still.

I believe those are the main points.  We were  there from 7:30 a.m. until 4:00 p.m., so it was a VERY long day, and VERY tiring, especially for Ren. However, she was a trooper, as usual, and very productive.  We are supposed to be receiving a Care Summary of everything from the clinic, so we shall see if I forgot anything worthy of mentioning!

Please pray:

1.  That the weaning of her off her seizure medications will be successful – that she will NOT have any seizures, that has outgrown them, and will remain seizure-free.

2.  That her  growth plate in her knee will continue to grow, so as to not cause complications in the future.

3.  That her torso strength will increase, to help prepare her for walking.

Daily bedtime reading

12/30/14 Trial Wheelchair

At Ren’s school recently, we met as an IEP team, and the Assistive Technology (AT) gal shared her evaluation of Ren.  There had been some difficulty finding good seating for Ren both on the floor and at her desk.  On the floor because it’s hard for her to sit up straight and comfortably because of her KAFO braces.  The desk because she could only sit comfortably by sitting on the very edge of the chair so her feet could touch the floor and provide her with support.  The simple solution to both?  A cube chair.

 

 

 

She also had some concerns about Ren being able to participate in PE, but the only time she really observed her was when a sub was in there.  When I have peeked in on her during gym, she is racing around with all the other kids, and the PE teacher (whom is also the adaptive PE teacher) had already come to me in the beginning of the school year for ideas how to help her be able to participate.  During the soccer unit, she duct taped a binder to the bottom of her wheelchair so she could “kick” the ball around using her chair.  The other staff agreed that we felt the PE teacher was finding ways to include her, so that concern was dropped.

The main concern dealt with Ren’s ability to be mobile and participate in play time during outdoor recess.  Before snow, it was ok, because there is some sidewalk, and I often saw her with other kids, racing back and forth on it together.  And, she (with the help of an aide) would get out of her chair and play on the “Supernova” (a web looking play equipment), swinging around using her hips and arms and scaring all the teachers with her crazy lack of inhibitions.  But, when winter came, it became difficult to move the wheelchair around on snow-covered ground.  So, at the IEP meeting, we agreed to try out an electric wheelchair.  This would allow her to move around on the snow, even if to just get her outside, and even if she gets out of it to play (which, when she finally did, had a blast crawling around in the snow with other kids, playing cats and dogs).  She also wants her to try it inside at school.  At first I objected, as I saw it as…making her seem more handicapped….or as making her more dependent than she is.  However, the AT explained that they are finding that little ones who have to use their arms so much are getting shoulder problems when they are older, AND….with all the time on her feet (her classroom teacher makes her use her walker in the classroom whenever possible, which I am happy about) there was concern about her losing stamina, and that affecting her academics.  So, with some reluctance, I did say it was ok to try it in the school building as well, when traveling to other classes across the building.

She has only tried it 2 days at school so far, and then it got sent home with us over Christmas break, because she wants to see if it would be something we would use at home.  I at first was like, No way would we use that thing.  Now that we’ve tried it once, I’m still thinking,  There’s no way we would use that thing.  It is so HEAVY!!

Ren is doing well.  I think she still needs to prove to some of the teachers that she knows more than she shows….because the stories they tell me of what she “does not understand” just do not make sense.  She is progressing with reading and math, but she takes FOREVER to write things and do her work.  She’s just so meticulous and slow…and I think becomes distracted too.  I think she is hanging on academically, but her language delay really gets in the way.  Don’t get me wrong, her speech has come a LONG ways, and sometimes I wish the staff there could have seen/known her even just a year or so ago so they could see what I mean, but it still is a barrier.  She talks about friends, though, and the other day I heard three girls in the hallway arguing over which of them was better friends with her.

Other things: she should be getting a new walker sometime soon, and the wheelchair attachment, the PT is concerned about her right KAFO brace being too tight or short so we’ll need to get that checked out, and she is really getting harder and harder to carry around, so as she gets bigger, we’ll have to change some of the things we do!  However, at least I don’t need to lift weights as part of a workout because she provides that for me!  Oh, and the school has now installed automatic doors to the building, since it is necessary for Ren.  It is hard to believe they did not have this, but I guess an older building and not a need before her….

Praises:  No seizures for almost 2 1/2 years now!  Good adjustment at new school and re-establishment of care locally.  Caring classroom teacher who advocates for and challenges Ren.  We were able to jump right into a county program that provides funding for certain equipment and supplies that insurance would not cover – In our former town in WI, we had to wait 5 years for her to get into it.

Prayers:   Her fractured growth plate in her knee to not cause the predicted complications (I am sure we will have x-rays on that in the near future to monitor it), her speech and language to continue great progress (to “catch up” with her peers), increased strength and balance in her legs/torso to enable her to walk with arm crutches someday.

Here are some pics!

She loves Minnie and Hello Kitty!

She loves Minnie and Hello Kitty!

She loves Frozen!

She loves Frozen!

Shopping at the Children's Museum

Shopping at the Children’s Museum

Trying out the electric wheelchair

Trying out the electric wheelchair

 

 

 

 

11/14/14 Back in Wisconsin

So I see that it has been a few…..ok, five….months since I updated this blog.  I wonder if anyone can keep up with me?!  It has been another hectic time with yet another big move….back to Wisconsin.  I will spare all the details about it all, but will say it is nice to be able to visit my parents more often, and to randomly see my relatives at the gas station or wherever, and to hang out with my cousin.

With the move comes yet again more transitions into Ren’s healthcare.  Because though we moved back to Wisconsin, we are in a different county, almost 2 hours away from where we originally came.  So, we are slowly getting her acquainted with new physicians in the area.  First, we found a very local physician for her basic care and yearly exams.  Next, we met with the Physical Medicine Rehabilitation doctor and Orthotics specialist, whom put new velcro on her KAFO braces.  No real changes in anything for her with these appointments – just getting established.  We then made a visit to Milwaukee, to meet with her former urologist, whom performed the surgeries on her MACE and mitrofanoff procedures a year and a half ago.  We got some cream to help loosen up the skin in those “surgical holes”, as it has been becoming more difficult to cath her, and her hole for toileting has been scabbing over a lot.  After seeing the notes from the urologist in Columbus about the pressure in her bladder being of possible concern, he will be connecting with a urologist in our area, whom he knows and speaks with often, to set up an appointment for another urodynamcis study, to re-check the pressure.  That will be nice to do this more locally, instead of traveling almost 4 hours.

Next week, we will meet with that local urologist for an ultrasound on her bladder – not sure when the urodynamics study will be – and followed by meeting an endocrinologist, which will be new to us. Then, in the beginning of December, she will have an EEG to provide information related to her past seizures, meet with her new neurologist, followed by a physical therapist.  Then, sometime in….February?   maybe?  She will go to a spina bifida clinic and meet up with all the specialists again in one day.  Whew!

Ren is in another new school again this year.  Hopefully this will be the last school change for our brave kiddos.  They have all adjusted so well to our moves. Much better than me!  The nice thing about the situation this year is that I am teaching in the same building as Ren.  This is the first time (granted, she’s only in first grade, though she was in kindergarten two years  in a row too), and I am really enjoying it.  I like greeting her in the cafeteria at lunch everyday.  I like seeing her randomly in the halls.  I like how my students think she is so cute and awesome.  One of them told me the other day, “Ren can go as fast as she wants, and she will never get in trouble for running in the halls!”

And, though I was initially worried about her needs being met in such a small school, I have been overall pleased with everything at school.  She has a great teacher who identifies her needs and advocates for them.  You see, this is really probably the first time this small school has had a child in  a wheelchair, and since it’s an older building, it does not have everything handicap accessible.  Her  teacher notices these things, and takes action on it.  I’m so busy in my classroom, and am not with Ren during the day, I don’t notice the things she does.  I’m so happy that Ren has another great teacher this year.  Especially since I was so overwhelmed with a new teaching position (that I LOVE) and could barely keep up with things.

She is also getting good support for academics, speech, adaptive P.E., and physical therapy as well.  She is hanging in their academically, though struggles a bit with comprehension (math concepts, reading comprehension, etc), but this is pretty typical of kids with hydrocephalus.  I still think she has it in there; her brain is still just working on re-wiring and figuring things out..  And though I was at first worried about there not being a nurse in the building, the secretary and aides have been great replacements.  Plus, I’m there.  :)  I have been told that the parents love the fact that she is in there, and everyone loves her.  Who cannot?  I mean, I know I am biased, and I am aware of her stinkerish behaviors at times, but, really, she is quite adorable.  (And, she knows it….!)

Ren’s speech is making steady progress, and with it she throws in new lines that are hilarious coming out of her tiny voice.  The other day she said to me, “Mom….tomorrow can you go to the store and  get me things….a Dora shirt, socks, sweatshirt, and a book.  Can you handle that?”  Only those who know her personally can probably find the true humor in that, but that’s ok.  Her walking is…not too different yet.  We need to get another walker to practice with at home….and will address that at her December appointments.  Still no seizures!  And still quite ecstatic about that.  Oh, and we have a trampoline now, and though we have snow all over the place now (boo hoo!) aand can’t go on it now, she had a blast on it this fall.  She has freedom in that thing, being able to roll around and bounce around all over.  Kinda like swimming….which I need to look into again….hmmm……

She is still the happy, carefree, good-natured, determined, funny girl she has always been.  And we continue to love her to pieces.

Prayers for continued good health, for her surgical sites to be more cooperative, and continued progress in her speech and walking are always appreciated.  :)

Below are two pictures from her physical therapy in Ohio, and then her school picture this year, which seems to be the only picture I have.  I realized to my dismay that I have not taken pictures since moving.  Yikes.  Gotta get cracking on that.

DSC01924DSC01925DSC01965

6/25/14 – Ortho

Ren had an appointment with orthopedics last week.  We hadn’t met with an orthopedic surgeon since being in Ohio, and this was our greatest area of concern — you know, because of her hip coming out of her socket, her leg length discrepancy, her metal plate in her femur, and her fractured growth plate in her knee.  When we first met the doctor, he basically said, I am not sure why we are meeting.  He claimed that none of her films from Wisconsin had made it there, which was quite frustrating.  So, she had new x-rays done on her femur and her knee.   Here is  a summary of what he told us:

1.  If her hip is coming out of her socket, leave it.  It does not do any good to have surgery to put in back in place, because the muscle tone of individuals with SB is weak, and it would probably just come right back out again.  And, he basically said he never would have done the hip surgeries in the first place, because of that very fact.  We heard this from another orthopedic surgeon as well, in Wisconsin, after the surgeries had already been done.  These very surgeries that caused all her fractures, which caused her to need a metal plate in her femur, which caused her fracture in her growth plate in her knee, which….

2.  The fracture in her growth plate in her knee has caused the plate to….stop growing.  I asked if this means her leg will not grow, and he said no…but it could cause her knee to become “deformed.”  Oh, that’s all, that is fantastic.  It also could make it pretty much impossible for her to be fully ambulatory, full-time, because the stress on that knee would be too much.  Now, he did say that because of her weak hamstrings and thigh muscles, particularly in her right leg, she may not have been able to do that, anyways, but we are not happy with the fact that the fracture will make it even less likely.  Today, Ren said to me, “Mom, when I get older, I am going to walk, ok?”   I smiled, and said, ok, hoping she would prove everyone wrong.  The doctor said that for now we just continue to monitor the knee, to see if any further complication arise.  It could cause some, it could not.  Please pray for not.

3.  The metal plate in her femur.  The removal of that thing has been an issue of great controversy between T and the original surgeon.  T insisted he did not want to risk another fracture, and so did not want it taken out (all her past fractures occurred right after surgeries, due to the weaker bones becoming even weaker from lack of weight bearing when casted).  I understood his stance, but also didn’t necessarily want metal inside her, and also feared that it would weaken the femur bone, as was mentioned by the surgeon.  However, THIS ortho guy said, at this point, leave it in.  It would be very complicated to try to take out now, because the bone is growing around the metal.  Plus, there have been studies now that show that leaving metal in a child does not have any negative effects, according to him.  SO, that settles that.  T was happy.  (And I was ok too)  :)

4.  The leg discrepancy.  I guess it is somewhat common in kids with SB, and is not much of a problem, because it can usually be remedied with bracing.  She currently has a leg discrepancy of about 1 cm, and she has a little lift that she wears in the one shoe.  So, that too shall continue to be monitored.  Oh, also the hip coming out of its socket probably has something to do with it as well.

5.  She had a bone density test that day as well (it was ordered because of all of her past fractures), and that test turned out just fine.

 

So, that was our appointment.  It was informative, yet frustrating – because it made us annoyed once again, reminding us that the surgeries that caused all of her fractures probably should not have been done in the first place, and she could have avoided many of these problems.  But, since there is nothing that can be done about that now, we must move on and do what we can to help her.  And pray that her growth plate fracture does not cause any complications.  And that it does not make her knee deformed.  And that she can still be able to walk with arm crutches.  Even if she has to use the wheelchair for long distances, I still hope she will be able to walk like she wants to walk.

Recently, one of her brothers said, “Will Ren be able to walk some day?”  And I said, “Well, maybe she will be able use arm crutches someday.”  And Ren said emphatically, “And my WALKER!” as in, duh, I am already walking!   And she is doing a nice job with her walker.  She is using it to walk outside on the grass, walking all over the place, strengthening her legs.  Maybe she can still prove the doctors wrong….

The praises:

*Ren has been seizure-free for almost 2 years now.  They may consider weaning her off her seizure meds soon…..or at least try it.

*Ren’s speech progress continues to amaze us.  A year ago, she was six years old and had the speech development of about a 3 year old.  Now, she is seven years old, and her speech development is at about a 5 year old.  This is totally my own observation, from what I know about speech development, and listening to her conversations between her and her 5 year old friend, but I have been pretty accurate at guessing this in the past.  The point is, she is closing the gap.  Hopefully one day the gap will be closed.

*  Ren gets to go swimming in the pond here, and I don’t have to go in with her!   Ok, that is selfish and lazy of me.  But, it shows her growth.  Granted, I put a small life jacket on her, and make her use a noodle (her dad does not, though, as I learned yesterday), and we still have to supervise her (even without SB we would, she is only 7!), but she doesn’t tip over like she used to when she was smaller.  She has figured out how to keep herself balanced enough, or maybe it is just because she has grown.  Regardless, she is able to do it.

*  That Ren continues to also amaze us with her life.  We are so honored and privileged that we are allowed to have her in our lives.

The prayer requests:

*  You guessed it – Please pray that the fracture in her growth plate in her knee will…..not cause complications…..and even better….perhaps even be healed.

*  Continue to be seizure-free

*  Continue to close the developmental gap in her speech

Thank you for all of your support.  I am on a SB forum on Facebook, and the things that people say about what other people say about them or their child with SB…..I must just be surrounded by wonderful friends and family, because the people I know have only said wonderful things about her, and have been so supportive.  I suppose there may be people who think un-nice thoughts and just don’t say anything, but I suppose I am glad they don’t say it.  Especially around T – He would NOT deal well with those people. :)

In closing, (with pics afterward), here is a bit of Scripture from John 9, for reassurance that her disability may be allowed to come forth, for a pretty good reason:

“As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.”

004 004 005017

 

04/20/14 – SEVEN

Ren turned seven a few days ago.  I cannot believe she is SEVEN.  Seven years ago, I was in the delivery room, telling God I was giving everything into His hands.   Seven years ago, we chose the name for her that means “Reborn,” because she was born healthier and stronger than we were led to believe.  Seven years ago, our lives were changed…for the better.  Because seven years ago, we were given the gift of a beautiful, delightful, funny, determined, wonderful little girl, who has taught us that having a disability does NOT mean her life is less important, or less worthy, or less valuable, or less able.  She is the bravest person I know.  With every obstacle or challenge she has, she pushes through it, smiling.  And she brightens our day everyday.

There have not been too many changes for her since being in Ohio.  But, that is a good thing.  She is wearing her KAFOs, so leg braces that go up to her thighs.  This has been supporting her knees, as well as enabling her to walk with her walker much better, even walking around in the grass, which she was not able to do before.  They recently lengthened one of her braces – I guess her left leg grew, which if true is good, because that leg had been shorter than the other.  She has had an MRI, to provide a baseline of her spine, and all looks good there.  She has had her eyes checked (done yearly due to her eye surgery early in life), and that appears to be ok for now, though a comment about needing glasses in the future was made.  We are awaiting an appointment with orthopedics, as they have yet to look at her past x-rays; I believe she has an appointment in May.  I have been worried about her fractured growth plate in her knee, her hips – which may be coming out of their sockets again, according to an x-ray before we moved – and the metal plate that is still in her femur.  So, hopefully at this next appointment, we will get the opinions of these doctors on what steps need to be taken with those issues.

Ren has physical therapy at school, but she also goes once a week to a PT clinic.  There she has won the hearts of the two therapists that work with her, one of which also works with her at school.  They are so inspired by her hard work and perseverence, and get a kick out of her sense of humor.  They are working with her on how to use arm crutches.  It is slow progress, but it is coming along.  My ultimate (realistic) hope is that she will be able to walk using these forearm crutches in the future.  If that happened, I would be thrilled.  In the meantime, she uses her walker, or in some cases, a stool.  Yes, a stool.  When she is at her friend KT’s house, she and this 4-year-old friend of hers will find a small stool for her to hang onto as she pushes it and walks around the house.  And, they think nothing of it.  It’s just a way for her to get around, that’s all.

Ren’s speech has progressed IMMENSELY this year.  She is talking all over the place.  It is still somewhat choppy, but her vocabulary is huge, and it is just so great to hear what comes out of her mouth.  Sometimes the things she says makes us laugh, even though from a “normal” 7-year-old it would not be impressive or humorous, but because we know what she has come from, we appreciate it so much more.  Today she was talking and could tell I was not really paying attention, and she said, “Mom!  Are you listening to me?!”  And the other day she said, “I like to move it, move it!  I like to move it, move it!”  Again, nothing big in most people’s eyes, but big to us.  Oh!  That reminds me – she is also SINGING, with WORDS!  In one of my previous posts, she was doing some singing, but mostly “La la la….”   Now, she sings with words, and it is so sweet.  And funny, because she usually just makes up her own words.

Her second year in kindergarten is proving to be successful, as she is performing at or above grade level in all subject areas.  They send home a portfolio every 4 1/2 weeks, to show test results.  On her last reading unit test, she scored a 100%.  That is HUGE.  She has a wonderful support team at school, a wonderful classroom teacher who emails me every night about how her day was (they are working on encouraging her to speak in front of the class), and an aide whom Ren adores.

There have been NO seizures, going on about 21 months now seizure-free.  Which. Is. Awesome.

And, before I close, having a child with SB makes for some interesting stories sometimes, and exposes the kids to things that, though they consider the norm, others would seem strange or gross.  The MACE and mitrofanoff procedures she had a year ago have been extremely helpful, especially when traveling.  Just a reminder, that now we are able to cathetorize Ren through her belly button, so when we travel, I don’t have to find a place to lay her down, I can just do it with her sitting in her car seat.  So, during one of our gas station stops on the way to Wisconsin to see family a few days ago, I was standing outside the van next to Ren, getting ready to cath her.  I have to back up a bit, to explain that normally we have a portable urinal container to have her “pee into,” that allows us to measure how much she pees (yes, we measure her pee), and while on the trip, I realized this container got left at home.  Having to be resourceful, I found an empty water bottle in the van and used that, which was actually better, because the cap screwed on nicely, unlike the urinal container, whose cap sometimes came off and pee spilled all over the van.  Why not empty it right away, so it does not spill, some may ask?  Because sometimes at gas stations, there just is not a right way or place to empty a container of pee.  So, sometimes it gets set in the van until we can find a more appropriate, discreet place to empty it.  Anyways, so after the first time of cathing her on the trip, I used the water bottle, closed it up, and set it on the floor next to her seat. And so on one of our next stops, when it was time to cath her again, I was getting everything ready for her, when suddenly I hear in the back seat, one of our 10 year old twins shout out, “Hey, Mom, Ren’s pee!” and I look up to see him handing me a bottle of pee.  For whatever reason, I just started to laugh…a lot.  I almost couldn’t stop.  The humor of the situation just hit me, and all I could do was laugh.   The fact that our kids just saw this type of situation as “normal,” and did not blink at all to find a bottle of pee by their back seat, was….funny.  Sometimes you just have to be able to see the humor in things.

And, Ren is definitely able to do that.  Everything is great to her.  When I say, “Ren, it’s time to sit on the toilet (for 45 minutes),” she will shout, “Hooray!” and when I say, “Ren, we have to go to physical therapy (and work really hard and long),” she will shout, “Hooray!”

She just loves life.

Happy birthday, Ren.  You are my hero.

IMG_0347IMG_0352Ren on walker

 

 

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

 

 

 

 

 

 

 

 

5/29/13 Race!!

Last Saturday, Ren got to participate in a 10K run.  It was such a fun and amazing experience.  I would do it again in a heartbeat.

The run was organized through an organization called myTeamTriumph.  They collaborate with other organizations and partner up with another race,  and basically set everything up for the teams, including providing strollers for the individuals with physical disabilities – kids through adults, who are considered the “captains” of the team – to ride in.   Ren was the “captain” of her team, which consisted of five “angels”, who ran together, taking turns pushing her.  Her angels included me and Tony, her aunt and uncle, and a friend.

This particular race was part of the Madison 10K Twilight run.  At this same race last year, there were 3 myTeamTriumph teams.  This year, there were 6.  Everyone was so wonderful and happy and excited.   We all had our pictures taken in front of the capitol before the race, and all of our kids and nephews and my parents were given red myTeam Triumph volunteer shirts, since they were kind of part of the team too.

The myTeamTriumph teams began first, at 7:50 p.m.,  10 minutes ahead of the rest of the runners.  Because it was in the evening, we all had glowsticks, and Ren’s stroller was decorated with Dora balloons, streamers, and a glowstring.  As we ran, people cheered, and as runners passed us (which many did!), several shouted things like, “Way to go, guys!”  or “You guys are awesome!” or, my favorite, “Good job, Renaya!”  It truly was a FUN run.  Everyone was SO supportive.  I have not been a part of a race since college, and this was no doubt the best race I have been in.  It was relaxing, we talked and laughed the whole way (except Tony, whom was the only non-runner in the group – he was just happy to finish the race!), and, most importantly, Ren had a great time.  The best part was the stretch to the finish line, where music was playing, lights were shining, the crowd was cheering, names were being announced as we came, our kids and parents were waving to us, and Ren crossed the finish line, with her angels surrounding her.

It was such a wonderful experience.  Ren really was treated like a rock star that night, as were the other 5 captains.  Because they deserve it.

945178_10151548477083366_301264069_n

481402_376877815756617_141069106_n

May2013 036
May2013 038

May2013 014

 

 

5/23/13 Tubes Out

Today we went to the Children’s Hospital for a 6-week follow-up appointment for Ren’s MACE and mitrofanoff surgeries.  The big step — they took out the tubes that have been in her abdomen area since the surgeries.   We will now cath her through her belly button.  We have done it a couple of times, and it is a little strange inserting a catheter into her belly button and having pee come out.  :)   We also will insert a catheter into the hole next to her belly button, for when it is time to sit her on the toilet and flush her colon/bowels.  We have to keep a “plug” in that hole for a couple of months, though, to ensure it does not close up.  The plug kept coming out today, I think due to the type of tape we were using.  The second picture below shows our attempt of taping it tonight.  I guess we will see in the morning if it holds.  The red sore-looking areas around the areas are due to the stitches, which we just taken out today, and should lighten up and heal soon.  (The lighter redness around the whole area is from all the taping down of gauzes we had to do these past 6 weeks – That should heal soon now too).

Ren has no restrictions with these “holes” – even while needing the plug.  She can go swimming – yah!  Which is good, since she starts up swimming again in a couple of weeks.  She will also be starting up Horse therapy lessons as well.  Summer is almost here!

May2013 001 May2013 002

4/13/13 Post Surgeries

Ren had her MACE and mitrofanoff surgeries a week ago Wednesday, on April 3.  They went well, and we were home after five days in the hospital.

On the day before surgery, they had to do “bowel prepping,” so she would be all clean on the inside to make for a safer and easier surgery.   She had a tube put into her nose for administering a medicine that would assist in moving the bowels for the cleaning out.  It seems most – or all – kids HATE the nose tube being put in, and there’s lots of crying — understandably.  However, Ren only gagged and coughed a little, blinked a lot, and that was that.  All of the nurses were pleasantly shocked.  She also had an IV inserted to keep her hydrated, and she did well with this, too.  Strangely, the only time she cried was when, later, they hooked up the IV, which does not involve pain or discomfort at all.  I wondered if she realized she would now be stuck…and didn’t like it!  Anyways, after being all set up, she eventually starting pooping….a lot.  At one point, she was sitting in a pool of liquid poop on the bed.  Sorry, but if I had to see it and she had to sit in it….you get to read about it.  :)  We transferred her to the toilet after that — and she sat there for about an hour, or maybe two, I can’t remember, with T or I sitting nearby.  She played the I-Pad for most of that time….not much else for her to do easily there.  The whole process took about 3-4 hours from start to finish.

The following morning she went in for surgery around 10:30.  While in the pre-op room, waiting for them to take her away, she was acting so calm, and silly, that several staff member assumed she had the relaxing medicine already.   Nope!  She was just being herself.  After she was wheeled away, we went up to the waiting room, and prepared for a 4-6 hour wait.  We occupied ourselves with the I-Pad, reading, Sudoku puzzles, checking email, and having lunch with friends, and with periodic praying.  Five hours later, the surgery was complete, and the surgeon came to talk to us.  He said everything went well.  They were able to use the appendix for one of the stomas, for the colon/bowels, I believe, but they had to cut from the intestines to create the stoma for her bladder.  Though a little disappointed, I know this is what commonly happens.  What it meant was a longer recovery, because after being cut into, the intestines stop working temporarily, while it heals.   She had a different, bigger nose tube in, that was sucking out the stomach juices, since they couldn’t go down into non-working intestines, and if they just sat in the stomach, she would eventually throw it up.  She would need to keep the tube in for about 2 days, which is usually the amount of time it takes for the intestines to “wake up” from it all and start working again.  They check this by listening for gurgling sounds.  Very high-tech.  :)  The surgeon said it is after this happens that recovery really speeds up.

The next couple days, Ren was very, very quiet and subdued, and had no smiles.  She did not act like she was in a lot of pain, though she had plenty of pain medicines, and did whine about her tummy hurting at times, to which we responded with pushing the morphine button.  However, sure enough, two days later, her intestines woke up, and she got to have the nose tube out.  A couple hours later, she was smiling and talking again.  And by evening, she was eating pancakes.  This whole time, by the way, she was either playing with play dough, coloring, playing with Legos, while watching a princess movie…..I mean nonstop.  We had a nice visit with a college friend, followed by a visit from my brother and his family, and the next day, we had the ok to go home.

The colon stoma has a short tube coming out of it with a cap on it.  We are doing her bowel flushes through this for the next 6 weeks.  She still sits on the toilet like she used to, but now I can insert the fluid through the little tube in her abdomen (colon), instead of having her lean over and administering it through….you know where. The bladder also has a tube coming out from it, with a urine bag attached instead.  My mom modified a little canvas bag to fit the urine bag in, so the pee could be hidden from view (see pic).  We are not needing to do any cathing right now, as while she has the urine bag, we just need to empty the bag every couple of hours.  After these 2 weeks, they will take off the urine bag, and we would then start cathing through the shorter tube for the next 4 weeks.   After these 6 weeks are up, they will take out both tubes, and we will use just the “holes,” or stomas, for her bowel flushing and cathing.  They need to keep the tubes in for that long to help keep the holes from closing up, kinda like when you get your ears pierced, I figure.

So. Ren is doing great —  She was tender in the abdomen area for a couple of days, but she has been wearing a white “binder” wrapped around her torso (given from a friend whose son had the same procedures done a year ago) which keeps the tubing more secure, and she really likes that added support it gives her.  Next Thursday we go back to the Children’s Hospital for a follow-up appointment and to have the urine bag taken off.

She is not moving around too much yet, which worked out well because she also got her leg cast (from her foot surgery) off this week.  We are weaning her back into standing on her leg; due to her past fracture history after leg surgeries, we want to take it slowly.

It has been an eventful month for Ren, but in another month, when her leg is back to normal use and her stomas are healed up and able to be used the way they are intended,  things will be really good.  And just in time for summer, too!

Thanks for all those who have been praying for her.  We are blessed by all of you.
Isaiah 41:10  So do not fear, for I am with you; do not be dismayed, for I am your God.  I will strengthen you and help you; I will uphold you with my righteous right hand.