1/19/16 Inpatient Therapy

Ren has returned from her inpatient therapy program, a few days early.  She stayed for one week in the pediatric wing of the hospital, with the goals of getting her physically back to where she was from before her leg surgery in a shorter amount of time compared to doing outpatient therapy once/twice a week for weeks or months.  Each weekday was filled with a few hours of physical and occupational therapy, and the rest of the time filled with either school work with a tutor, speech therapy, music therapy, with a Child Life Specialist, or playing with a volunteer.  She was kept busy from 8:00 until about 4:00 each day, sometimes later.  I was only there over the weekend, from Friday evening until Sunday evening, and her schedule was extremely light on those days, with PT and OT just an hour each on Saturday, and only 1 hour of PT on Sunday.  T was with her two nights, and Grandma three nights, so she had someone with her every night.

Though our feelings about the experience are mixed, here are some things that came out of it:

  1.  It has been determined that Ren needs to go back to wearing KAFOs (the longer leg braces) on both legs, as she just does not have the leg strength to wear only the AFOs.   They fitted her for these braces, which will be ready in a couple of weeks.
  2.  The PTs were instructed to try out “loft strand” arm crutches, to see if she could learn to use these this week, and again, she is just too weak to be able to use these yet.  Perhaps a long-term goal.  Nothing new there; it’s been a long-term goal for, a long time.
  3.  Ren has been using these power-assist wheels with her wheelchair, and we recently got new manual wheels for her to be able to use as well.  We have decided to switch to using these for the winter, as it seems her arm strength has decreased a bit from not having to push the wheels.
  4.  They are going to recommend to the school to set up a walking program for Ren, where she walks for a certain amount of time each day with someone, to help increase her leg strength.
  5.  We were given some stretches and exercises to do with Ren at home, to continue to get her strength and flexibility back.

So, we are so glad to have Ren home; she is so happy to be back to school.  (She CHEERED when she realized she could go back today).  We are hoping for things to slow down a little again for her, as she has had quite a bit going on since October.  A few more appointments to check in on her orthotics and on her recent bladder surgery…..and then hopefully she can take a break for awhile!  We had a good run – almost two years – before all of this, so we are grateful for that, and hope to have another run like that again soon.

 

 

 

 

 

 

 

1/4/16 Post Botox Procedure

Ren had her Botox procedure done today.  It was a fairly short procedure, in and out of the operating room in a little more than an hour.  As usual, she was a hoot beforehand, giggling and being silly in the pre-op room, making everyone laugh.  Even being rolled into the operating room, the Childlife Specialist said she was happy-go-lucky.  Once in the operating room, she got a little nervous when everyone starting bustling about, but cooperated and put the mask on and was out.  AFTER the procedure, in the recovery room, though, is always a different story. There are only two situations when Ren is cranky and upset.  One, is when her brothers tease and annoy her.  Two, is coming out of anesthesia.  She cries and cries and nothing can comfort her.  Scratch that – the one thing that makes her a little less cranky is getting the IV out, which of course they will not do until they know for sure she is fine.  She needs to be able to keep down liquids, do some coughing, etc., which in this case was a relatively quick 20ish minutes.  She does seem to take about a half hour or so to start acting more like herself, with or without the IV.  It’s just that the IV causes even further stress and anxiety.

The doctor said it all went well, but that the Botox usually takes about 2 weeks to do its job.  In a month, she will go in again for another urodynamics study to see if her bladder pressure is better, to determine if it has worked or not.  Please pray it works!  🙂

I am in a couple of Facebook support groups for spina bifida, which I am sooooo glad I am, because I learn SO MUCH, get so much information, by reading the conversations that go on in there.  Anyway, in a recent conversation, some adults with SB were talking about how they do not like it when parents share personal information, such as regarding bathroom issues, about their children in blogs or whatnot, because when it’s out there on the Internet for anyone to see and know about….it becomes too personal, especially when they are older kids/teenagers.  Which made me think about all that I share about Ren, and wonder if it is too much.  So, I am going to probably rethink things in the future as to what, or at least how, I share information about her.  I started this blog for two reasons:  to update family and friends whom wanted to keep up with what was going on with Ren, and to have something out there for others whom want to learn more about spina bifida – maybe parents whose baby was just diagnosed in the womb, for example – so they could find some accurate information out there.  So they know that though it may not always be easy, it is always worth it.  And hopefully seeing pictures of happy Ren is will provide all the information they need.  So, I want to keep sharing information….I just might make sure it is still shared in a way that would not harm Ren’s integrity.

Before procedure - Happy!

Before procedure – Happy!

After procedure - Not happy!

After procedure – Not happy!

Half hour-ish after recovery - Happy again!

Half hour-ish after recovery – Happy again!

 

12/30/15 Botox, Therapy, and Seizure Free

Botox – What does THAT mean?  Well, some new issues regarding the bladder have come up recently for Ren.  A couple of weeks ago, she had a urodynamics study, which is a test that measures the amount of pressure in her bladder.  It is usually done once a year and has always been at a decent level, but not this time.  This time it showed she is leaning on having too much pressure in there.  Too much pressure can eventually lead to urine going up into the kidneys, which is not good.   To help remedy this pressure problem, we are doing two new things:

1) We have started to have to leave a catheter in her overnight.  After a few nights of trial and error, we are doing it the simple way by putting a catheter in with a bag attached and then tape the tube to her belly.  It seems to be working ok so far.  A new inconvenience, but an inconvenience is better than a new big health problem, and it too will become just another routine.

2) The urologist wants her to have Botox injected into her bladder.  Yes, Botox.  It relaxes the bladder, allowing it to hold more urine safely. She had been on medicine to alleviate this problem in the past, but it appears it is no longer enough.  She is scheduled to go in for this on Monday.  She will be put under general anesthesia, but it will be an inpatient procedure with no incisions.  It sounds like it works very well for many adults with this issue, and recently has been used on children with mixed results:   either it works wonderfully, or does not work.  However, it does not sound like there are any adverse effects from it; it just does or does not work.  If it does work, she would just need to have the procedure done every 6-8 months.  If it does not work, then she would need to have surgery – a bladder augmentation, which is NOT a simple surgery by any means.  Here’s to hoping it works for Ren!

Therapy – The topic of Therapy involves our decision to have Ren take part in a 2-week inpatient therapy program to help her bounce back from her leg surgery faster.  She will be staying overnight in the hospital for about 12 days.  Each day she will get 3 hours of therapy, including physical therapy and occupational therapy, and possibly some speech therapy as well.  They will provide a school tutor to work on academics while there.  The staff compares it to camp, as the kids are kept busy all day long, with therapy, school, socializing, and playing.  One of us will try to go there each evening to spend time with her and stay over too if possible, though I will most likely only be able to do that on the weekend.  Grandma will be staying with her a few nights as well (thanks, Grandma!).  Though a little nervous about the length of the stay, we think it will be a very good thing for her.  This will occur in a couple of weeks.

All of this was  discussed at her appointment with physical medicine yesterday.  Afterwards, we went to the orthotist, whom molded her for a new AFO for her right foot.  They are going to attempt having her just wear AFOs (shorter braces) on both legs, now that her right leg is straightened out.  The hope with therapy is that it will strengthen her leg up enough to make it possible to for her to be able to need just this AFO on her right leg.  It has always been quite a bit weaker than her left leg, but wearing an AFO is much lighter, and our greatest hope is for her to be able to walk with arm crutches some day, and all of these things are steps in that direction.  If it seems that her left leg just isn’t going to be able to gain enough strength for just the AFO, then they will just have her go back to the KAFO (longer brace) to provide the support she needs.  I don’t think this takes away the possibility to walk with crutches.

Seizure Free – Here is the most awesome news of all.  Ren has been off of her seizure medications for about a month now….with NO seizures.  I sometimes take it for granted how wonderful this reality is, as it has been 3 years now since her last seizure.  But, then I think back to those awful memories of when she had those first four grand mal seizures, each lasting 30-90 minutes each….it really is quite an awesome thing where she is right now.

Thanks to those who show her (and us) so much support, and to those who pray for her.  We appreciate it!

Please pray:

  • That her Botox procedure goes smoothly AND that it is SUCCESSFUL!
  • For her to continue to be seizure free
  • For her physical therapy to strengthen her up well and that she will soon show ability to start working with walking with crutches
  • For her speech will just have a big breakthrough, so she can show everyone how much I know is up in her working mind
  • For continued good health
Christmas!

Christmas!

 

 

11/11/15 New Cast

Ren went to the doctor yesterday to have her splint removed and a new cast put on.  While there, she needed an x-ray of her leg.  It was during this time that T texted me to tell me he was pretty sure she had a fracture.  Um…..what?!  My heart stopped and I instantly felt sick to my stomach as memories of her almost two-year-fracture cycle came rushing to my mind.  You see, when Ren was about 18 months old, she had hip surgery.  She was in a spica cast for 6 weeks, and the day she had this removed, she fractured her leg.  Long story short, every time she had a surgery, she would fracture her leg within a day BECAUSE her already-weaker-than-a-normal-kid-and-the-size-of-your-pinkie-bones became even weaker while sitting in a cast for so long.  This surgery-fracture cycle lasted almost two years before she was totally healed up.  Though I was not originally afraid of this same thing happening during this particular surgery – because (as the surgeon also explained) she is much older, and has much stronger and denser bones since she has been weight bearing for a much longer time nowadays.  So, when T told me this, I was confused, yet so, so upset.  I wanted to cry, imagining her going through that cycle again.  However – it had a good ending this time.  After the surgeon came in, he explained to T that it was not a fracture, per se, as, though the x-ray (see pic) definitely looked like a fracture, it was instead the place where he had CUT her bone, to allow her leg to rotate.  Though I had to fret on the fracture news for an hour at school, I was not too upset with the husband on his error because I was so relieved at the good news.

So, Ren is in a short cute leg cast for four more weeks.  The picture below shows what her leg looks like underneath. Those are PINS in her heel there.  Fortunately, she cannot feel any pain down there, nor much anywhere else below her hips.  Also the reason she recovers fairly quickly from leg surgeries.  Though…..I have recently discovered that she seems to recover fairly well from ALL surgeries.  I mean, I always thought she did, but it was confirmed recently in a conversation in a Spina Bifida Facebook group, where someone asked how long it took for their child to recover from MACE and mitrofanoff surgeries.  Ren had these surgeries a couple of years ago.  It was a pretty major surgery.  For the mitrofanoff surgery, the surgeon took her appendix and made a channel between her bladder and belly button, thus allowing her to cath through her naval.  (It has been a LIFE SAVER!)  The MA CE surgery involved the surgeon taking some of her large intestine to create a channel from her colon to the outside of her abdomen, about two inches across from her naval.  This allows us to flush her colon this way instead of….her bottom.  We do this every 2-3 nights, because she can’t, well, poop on her own.  So, onto my story.  In this conversation, people on average were saying that their child was in the hospital for 8 days, recovery taking a month to six weeks, including staying at home during that time.  I was like…um…my daughter was in the hospital for 5 days and back to school the next week, I think.

Back to her cast.  She needs this on for four more weeks, then they will remove it, and we will need to decide if/when we want her to be in a two-week long therapy program at the hospital.  She’d be there the whole two weeks, receiving like 3 hours of therapy a day, plus other stuff to fill in the days.  They said it is kind of like camp for the kids, and they all love it.   We live 40 minutes from the hospital, so…we will see.

Thanks again for all the prayers.  We DO appreciate them so much.

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10/28/15 Post-Surgery Update

Ren is recovering well from the surgery after a one-night stay at the hospital.  The surgeon said it would be 1 or 2 nights there, and in my head I knew it would be only 1 night.  Ren recovers fairly quickly from surgeries below her hips, as she has little feeling down there.  Plus, she hates the I.V.  Wait – let me rephrase that.  She DESPISES with a PASSION that I.V. in her wrist.  That literally was the only thing that was upsetting to her.  Always  has.  And, I cannot say this enough.  I really, really, really dislike staying in the hospital.  I mean, I know that Ren was the patient and went through the surgery and was the brave and strong one, and I am just complaining when I say this, but I really just don’t like it!  It is long, and boring, and claustrophobic, and uncomfortable, and forget about being able to get any good sleep. But, enough about me.  Ren did get a few visitors – Grandma and three great-aunts surprised her with a visit and bearing gifts.  She loved every minute, of course.

As mentioned in the previous post, the surgeon’s task was to straighten Ren’s leg out.  What that means is, he had to ROTATE her leg, which involved moving it and putting screws in, and a plate in the ankle.  I cringe as I think about it.  She is currently in a splint that goes up the whole length of her leg.  This must remain elevated at all times, which means limited movement and full-time wheelchair or sitting/lying down.  She has a rental wheelchair that allows for her leg to be elevated, and that seems to be working alright.  She is ready for it to be off already, so it’ll be a long road for her!

So, despite a little scare with her having a 101.4 fever last night ~ turns out she just needed to do some more deep breathing to get her lungs opened up more ~ she is starting well in her recovery.  Thanks to all of our friends and family who showed us their support and offered their prayers ~ It means a lot.  I ended up being more nervous for this surgery than I thought I would be.  I mean, she has been through several surgeries, including a few much more major surgeries in the past, so I don’t know why.  But, after she was rolled off to the operating room, with more prayers being said, I was at peace.

“And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Phillipians 4:7

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10/22/15 Upcoming Surgery

As the heading suggests, Ren has an upcoming surgery…..as in this coming Monday, assuming her little cold does not get any worse.  Her right foot and leg are turning outward, so we need to get it straightened out. It will be a 2 hour surgery, and she will need to stay in the hospital at least one night, possibly two.  She will need to wear a splint up to her thigh for the first two weeks, as well as keeping it elevated at all times, and then it will be switched to a cast below the knee for another 4-6 weeks.  Prayers for a safe, successful surgery, as well as a quick and uncomplicated recovery would be appreciated!  The hope is that with her leg straightened out, we can then focus on strengthening her legs and torso so as to learn how to walk with arm crutches.  That would be awesome.

Also – We had Spina Bifida Clinic last week.  The greatest update from our day long visit is that we are switching her bladder medicine, Oxybutynin, to a different medicine, because oxy crosses the blood-brain barrier, and T found a study that shows an increase of dementia in older patients who have been using this medicine.  The effect is the greatest if used 5 years.  Ren has been on oxy for about 5 years.  Though not sure if this is why she seems to have some cognitive delays, we are totally going to check it out.  So, she is now taking a one-a-day pill that does NOT cross the blood-brain barrier.  We shall see if anything comes from it.

Ren just finished up her last swimming lesson today.  She took 6 weeks of 1:1 lessons at the YMCA, and of course she loved every minute of it.  She LOVES swimming and would do it all day if we let her.  I see potential for her to swim independently some day!

AND – It is has been over THREE years since her last seizure. She is still being weaned off of her seizure medication and has gone down from 5 mL twice a day to 1 mL twice a day.  If all continues to go well, she will be completely off them in December.  Please pray for a seizure-free LIFE for Ren!

October is Spina Bifida Awareness month.  Please spread the word about how spina bifida does not mean a hopeless future, and walking does not equal happiness.  Just look at Ren.    God is good.  All the time.  And He does NOT make mistakes!

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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

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New braces – Front view

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New braces – Side view

Birthday Girl - Loves Frozen!

Birthday Girl – Loves Frozen!

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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.

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