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!

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.

Next Tuesday we will be traveling to a Children’s Hospital where Ren will have two surgeries:  the MACE and the Mitrofanoff.  She will have the actual surgeries on Wednesday, and she will be in the hospital at least 5 nights.

Ren has a neurogenic bowel and bladder – as many individuals with spina bifida have – meaning her bowels and bladder do not function normally.  Because of the damaged nerves that control the systems, she cannot control them – she cannot fully empty her bladder & bowels on her own nor even really feel when she has to “go.”  And because of this issue, we have been catheterizing her since she was around two years old (now up to 4-5 times/day), and we also have been administering a cone enema to her for about a year and a half, which we do every other night to clean out her bowels – after being “flushed” with water administered through her bottom, she sits on the toilet for 30-45 minutes while it works out the poop.

The two surgeries she is having next week will provide alternate “routes” for these necessary tasks:

The MACE stands for Malone angegrade continence enema.  A pathway will be created directly into her colon, to allow for the “flushing” of her bowels through the abdomen area, rather than “down below.”  She will still sit on the toilet for 30-45 minutes every other night to do this, but the advantages are that it will allow her to be able to do the flushing/cleaning of her bowels more easily on her own, which of course leads to better independence, and it will do a total and better clean out of the colon and bowels, since it will be flushing it downward, rather than upward like with the cone.

The mitrofanoff procedure will create a pathway directly into her bladder, to allow for cathetorization also through the abdomen area, rather than “down below.”  Again, though Ren could be taught how to cath herself “down there,” this will make it a whole lot easier, more privacy for when others need to do the cathing, much faster (just lift up the shirt) and of course providing her with much more independence.   If she ever ends up being totally wheelchair bound (which I hope will not be the case, but am aware that it might), it will make this task much, much easier for her then.

For at least one of the surgeries, they will try to use her appendix as the stoma (pathway).  In the rare case it is large enough for both stomas, they will use only the appendix.  This would be the ideal case, for if they cannot use the appendix for both, or for neither, they will have to use part of the intestine, which just makes for harder recovery, since they will be slicing off a piece of an organ, rather than just removing the appendix.  So, prayers that her appendix would be of sufficient size to use for at least one (but preferably both!) stomas would be awesome.  By the way, I guess there really IS a use for the appendix, huh? 

Almost everything I have read about these surgeries has been good.   Most parents and patients have said it is totally worth doing.   However, I have also read the recovery is not fun…painful…hence being in the hospital several nights afterwards.   After the surgeries, she will have a catheter placed in the stomas to keep the pathways open, for about six weeks.  This means no swimming or baths for another six weeks after surgery.  Ren is also still in her leg cast from the foot surgery, though she will be getting the cast off in a couple of weeks.

Please pray for the surgeries to go well, without complications.  Pray that her appendix will be able to be used.  Please pray for a quick recovery.  And please pray that her foot is healing correctly.

I will provide updates after the surgeries.   Thanks so much for your prayers….

 ^”Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”  Phillipians 4:6-7

Well, we made the decision very shortly before surgery to only do the foot surgery, and not the removal of the hardware in the femur.  Since I (and others) had been praying for wisdom in our decision making, I am going to just go with the assumption that this was the decision God knew was best.  The surgeon said it would be no problem to do it at another time in the future, perhaps if/when she needs other work done on her other leg.   I am already seeing that things would be much more difficult with the extra worry of having to be careful of the femur.  Examples include:  when we cath her, because we have to push her leg way up high; when we do toileting with her, because I have to push her leg way down low; when she is in bed sleeping, because she twist around a lot.  Any of those activities could very well put too much strain on a healing femur, and so I am happy to have less worry and stress about it.

The surgery went well.  She went in about 6:45 a.m. and we were able to see her all casted up around 10:30 a.m.   She is such a trooper.  All the nurses loved how cooperative she was with them, doing all the stuff they have to do, checking vitals, giving medicine, etc.  The play lady (I know she has a real title of some sort) brought in a doll – a boy that Ren named Jenny – and let her put on the doll a hospital bracelet, a hospital gown, take her blood pressure, give her “shots”, and bandaids.  She really enjoyed that!  The surgeon had told us she would stay the night in the hospital, but he also mentioned that if we had the itch to leave earlier, he could make that happen.  WE HAD THE ITCH.  I had forgotten how LONG the days in the hospital are.  And, yes, that is speaking selfishly, since it is Renaya who had the hard part.  But, we knew she would be ok, because she was acting herself.  She was tired, worn out, and a bit weak, but we have had enough visits to the hospital to know when it is ok for us to go home.  SO, we were home by 6:30 p.m.

I stayed home with Ren yesterday while she recovered.  She was still obviously a bit worn out from the procedure, as she was very content just sitting on the couch with her leg elevated, playing with lego blocks, her “Jenny doll,” playing the Wii, and doing “homework.”  She has a couple of those generic reading and math workbooks for kindergarten that she calls her “homework.”  We work in in once in awhile, and that evening, she worked for like an hour straight, her preference.  Though not feeling well last night (very, very tired, and has a cold), she is back to her happy, active self today.   We cannot let her do any standing at all, and for this first week, we are supposed to have her leg elevated as much as possible.  Thankfully, she has been ok with this (well, the first night, she told me to take her cast “off” before going to bed), going with the flow as usual.  She’s so dang wonderful; sometimes I don’t think I deserve her.

So…..5-6 weeks in the cast.  It is during this time in the cast, and especially the time when we take OFF the cast that I get nervous, because all of her fractures in the past occurred after casts were taken off.  She does have stronger bones now, though, compared to a few years ago when she had those fractures, so the hope is her denser bones will keep away fractures.  It is still a bit of a worry for me, though…

She will be having a couple more surgeries, scheduled now for April 2nd.  If you have some spare time, please pray that Ren’s appendix will be of adequate length for those surgeries.  (I’ll explain in a later post!).  Also, prayers for safe healing of her foot, and no fractures down the road would be super.  And as always, for her speech…and to remain seizure free.

Thanks and praise to our heavenly Father for her safe surgery and for her continued run of being seizure free since August.  Thanks to all who prayed.  I know He hears us all.

Her foot before surgery

Waiting before the surgery...

Her casted foot

Coloring in the hospital while recovering

Feeling better!

Ren is scheduled for surgery tomorrow at our local hospital.  They are going to do some tendon work on her right foot.  Her foot is starting to become more “deformed” per se, as her arch is extremely high, causing her to walk on just her heel.  Her tendons are really tight above her foot too, so they are going to “loosen” (snip) them, and to help lower the foot more and fix up the arch problem, they are going to transfer one of her tendons to underneath her foot.  There was something about drilling a hole in the heel bone, and having a “button” of sorts at the bottom of her heel on the outside to be able to “tighten” the tendon up.  I cringe writing this.   But, the main thing here is that if it does not get some correcting now, she will have greater problems in the future.

The original plan was to have the metal plate in her right femur removed as well……but we may change that plan now.   Some of you know her history with fractures after surgery, due to her bones weakening during the weeks of non-weight bearing (as they are already weaker than a “normal” individual because of her lack of jumping, running, etc. that would make the bones dense).  Our worry is that having a cast on her lower leg would cause extra risk, because she is a girl that likes to MOVE, and if she is twisting her leg around with that heavy cast below…we just worry that would cause the healing femur to be hurt. However, if we do not take the metal plate out now, it will still have to be done sometime in the future, which would be another time in surgery and anesthesia and six weeks off her feet at that time.

We are not totally decided in the matter, but we will obviously have to decide by tomorrow morning, when we take her in.   She will be non-weight bearing for six weeks.  Four weeks from now, however, we have her scheduled for more surgeries (in a non-local hospital) for her bowel and bladder issues.  I will discuss those as it gets closer to that.  Having these surgeries done while she was down anyway from her leg surgery/s seemed to make sense to us.

Please pray that we will make the right decision regarding the surgery — whether to just do the foot, or to do the femur as well.  And please pray that the surgery AND the recovery AND beyond (her past fractures always occurred AFTER the casts were taken off) will go well with no complications, and that Ren will cope well with recovery.   She is NOT going to like sitting and not being able to move around.

“Jesus replied, ‘I tell you the truth, if you have faith and do not doubt…..If you believe, you will receive whatever you ask for in prayer.”  Matthew 21:21-22

So….Ren got a new wheelchair….Finally.  It only took, um, more than 6 months to come.  We started the process last summer in June, had a guy here in August to have her fitted and finish up the order details, and I thought we’d have it in September.  By October, I had to call to find out what was going on.  “Good news!” they say, “Your insurance has approved the wheelchair!”   I had been told in August that my insurance did not need a prior authorization, so why were they getting it authorized?  Then they say they have to come out and get her fitted again since it had been so long since they sized her for it.  He comes out, and says he will put the order in right away.  At one time, I was told it would take maybe 10 days for the wheelchair to come once it was ordered.  That seemed surprisingly short to me, so I figured, maybe 3 weeks or so it’d be ready.  November went by, then December came.  Finally, around December 20th (after several phone calls), we are told the wheelchair is in.  I can’t help but wonder if it had actually been in for awhile.  It finally gets delivered to us the second week of January.

Now, if the wheelchair was perfect, I’d be forgiving of the length of time it took, especially since Ren had a (not-s0-good) wheelchair to use in the meantime.  However, it is not as light as I thought it would be, and the handles on it are just plain ridiculous.  It has two handles that are tucked so close to the seat that one cannot actually push with them.  Then there’s this odd single handle going straight up the back as well.  The guy said he was having an engineer make us a new one, but it is all very annoying that we waited this long for it and there is this obvious problem with it.  Sigh.  It is cute, though.  I love the hot pink color, and it is a much better fit for her – and is much better to handle – than her old one.  So, though I am disappointed in the wait and the couple problems with it, I am glad that she has a better one.

As I write this, I hear Ren in bed “talking.”  She had her IEP meeting last week, and since it was a re-evaluation, they administered several assessments on her.  She is age 5-8, and her expressive speech development came out as age 2-7.  That did not surprise me; I guessed she was at about a 2-year-old level.  However, her receptive language development came out at an age 3-11.  That seemed low to us.  We know she is not quite the same as her peers developmentally, but we always felt she understood most of what was going on and what was spoken to her.  Her weakest area was in vocabulary concepts, so that is the area that will focus on in her therapy, along with increasing her sentence length.

Despite her low test scores, we are happy to see Ren showing progress in her speech.  She continues to say new words all of the time and imitates what we say often.  She is saying many 2-word phrases, several 3-word phrases/sentences, and even some longer sentences (though they are disjointed, missing proper structure).  It’s exciting to hear her be able to communicate more now and try to tell us stories (see video).   And, considering when she was 3 years old I was preparing myself for the possibility of her never speaking words, I am happy with her progress.

Ren has great support at school.  Yes, she is in a regular classroom with regular peers.  She does have assistance with transitions (recess, lunch, related arts, etc) and she does have some extra teacher support in the classroom and is pulled out of the classroom for some small group instruction and for her therapies.  She has speech daily, plus physical therapy once/week, occupational therapy twice/week, and adaptive PE once/week.  To be honest, I am unsure if she is “right where she should be” academically (like she was in 4K), because I believe they have increased the expectations/benchmarks this year.  I do know that she knows all of her letters and sounds and can identify about 10 (of their) sight words.  She can count to 30, and write her numbers to 20 with some reminders of formation (she makes some backwards), and we are working on writing to 30.  She also has several books at home that she can read independently and some with help.  I think writing words is the most difficult for her right now.  I guess I don’t think that is all that bad considering she has the speech of a 2 1/2 year old, and the receptive language of a 3 1/2 year old. 

We have a couple appointments coming up in the next few weeks where we will schedule some surgeries on her feet and leg, and most likely the ones for providing alternate routes for her bowel and urinary “stuff.”  I will explain those more after we have our consultations in the next few weeks.

Ren continues to participate in music therapy and swimming outside of the school day.  She has been SEIZURE FREE since August.  She has been healthy, she loves school, and is really doing well overall.

God is good.  All the time.

In the video below, Ren is telling a story about her school day.  She keeps talking about “jumping” at school.  I later learned that they were learning about Jumprope for Heart in PE.  Makes sense now. 

Ren has been in kindergarten for a month and loves every minute of it.  I was so nervous about her pulling her I-am-not-going-to-talk gig, about her receiving the help she needs yet also not wanting her to be overly helped where she is being enabled and not working toward her potential and challenged.  However, after some interactions with her great teachers, it seems she has adjusted very well.  She is doing some talking in the classroom, playing with friends, moving all over the place at recess, walking like crazy in her walker, and as happy as can be.   Conferences are in a couple of weeks, so I will learn even more details then, but so far everything is going well!

We traveled to a Children’s Hospital on Monday for an annual urodynamics study, which is a test that measures the amount of pressure in her bladder, detects any bladder spasms, and determines about how much her bladder can hold.  For a child with spina bifida, her test results were excellent, according to the doctor.  A “regular” kid her size can hold around 150-200 mL in the bladder, and Ren can hold at least 200 mL.  However, since she seemed to be having some wetness after school each day, we are increasing her oxybutynin (medicine that relaxes the bladder and reduces/prevents bladder spasms, which cause leakage) to three times a day.

We also discussed possible future surgeries.   The mitrofanoff surgery would involve providing a different route for her cathing.  There would be a hole right in the belly button, allowing her to cath directly into the bladder rather than the other normal route.  This could make cathing easier for us and nurses, and her – at least while she is young.  However, since many girls do learn to cath themselves the normal route unless other complications including obesity occur,  we are leaving it open to try to teach her to cath herself sometime in the near future, to see if she may not need this surgery.  Ultimately, it is up to us as her parents to decide.

The other possible surgery, called the MACE surgery, also involves a hole in the abdomen area, providing a different route for her enemas.  As I have explained in earlier posts, Ren (and many other individuals with spina bifida) has a neurogenic bladder AND bowel system.  We are pretty sure she cannot feel when she has to poop, nor does she have the ability to push it out well.  For the last year, I have been administering her a cone enema once every day or two in the evenings.  She has to sit on the toilet, lean forward, while I…well….give her an enema from “down there.”  She has to sit approximately 30 or more minutes to get things cleaned out.  The MACE surgery would provide an easier route for the enema.  We – and eventually she – can flush out her bowels through the abdomen, instead of from….down there.  She might still need to sit for 30 minutes, but it will clean her entire colon from top to bottom, rather than just maybe half of it, and there is a chance she may have to do it a little less often, maybe once every 2-3 days.  The MACE surgery is pretty popular, and I have read lots of positive comments about its results.  She would have to be in the hospital a week, or longer if she has both surgeries done, but the end results should be worth it.

We do not have to decide anytime soon about the surgeries, but we have started the discussion on it now.  My thoughts are we will definitely do the MACE surgery, but will wait to see how the self-cathing goes (whenever it is we start that) to decide about the mitrofanoff surgery.  Maybe in a year for whichever one/s we do?

Then, on Tuesday, Ren had two more appointments at our local clinics – one with the new pediatric orthopedic surgeon, and then one with the neurosurgeon.  Mainly, she has a very high arch that may be helped with a surgery involving transferring a leg tendon down there, and eventually, maybe one day, we might need to take out the rod that is in her thigh from one of her last fractures.  Our biggest worry for that one would be causing another fracture, and thus the fracture cycle, so the doctor was very understanding of this and emphasized he was not pushing it and it was not a rush to decide.  Other minor stuff:  She needs her AFO braces padded up because she is getting some calluses and potential pressure sores on her ankles heels, and they are supposed to check on the progress of her new wheelchair, because it’s been like 3 months since we first started the process for it.

The appointment with the neurosurgeon was mainly our request, to see if she needed to be getting annual MRI scans on her brain/shunt area.  He felt that it should be fine to do that once every three years, so she should not need that one yet.  However, he wants to do an MRI of her entire spinal cord to:  1) have a baseline for future reference and 2) to check for any beginning problems of the spine that usually accompanies spina bifida, such as tethered cord, and an expanding of her spinal “tube” (I forget the name of that term) that can cause potential problems.   We will be deciding sometime as to when to do that.  She will need to be put under for that procedure, and I really hate that.  But, he is hoping for us to do that sometime in the next 6 months.

Sooo…..mainly good news.  School is going well.  Her appointments went well.  No bad news, just thinking about some possible procedures that will either benefit her or give further information on her body.  No more seizures since her last one in July — We are even weaning her off of one of her “extra/backup” medications she has been on for quite some time.  She will still be on another seizure medication, though.  She is staying busy with school, Miracle League baseball and music therapy,  and swimming will start again soon.  Oh – and she was even on a float at our Homecoming parade today!

Our one main area of concern is still her speech.  She is receiving speech therapy at school almost daily now, so hoping that will help.  Again, she can say lots of words, especially with prompting, but she is not getting the phrases and sentences.  Please pray her brain will figure out how to do all of that….soon!

She has such determination and desire to be independent and like everyone else.  Below is a photo of her “mini-golfing”, where she of course insisted on doing it all herself.

We constantly are awed by the joy this little girl gives to us, and others.  She is our good and perfect gift.

“Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.”  James 1:17

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

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

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

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

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

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

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

Ren turned five years old last week.  I still cannot believe it.  She’s so funny, though – We started talking to her a few weeks ago about how her birthday was coming up and that she would be five years old soon.  Every time she’d respond, “No, four!”  However, a few days before her birthday, she finally accepted it, and when we asked her how old she was going to be, she would respond, “Five!”  And when we asked if she wanted toys for her birthday, she said no.  When we asked if she wanted clothes, she said yes!  Such a girl.

Her birthday came, and she was so excited.  She opened her presents with glee, including two books made especially for her from her twin brothers.  Most of her presents involved her one and only favorite character — Dora.  She received two Dora swimsuits, a Dora blanket, a Dora book, a Dora ball, a Dora microphone, and a Dora movie.   Oh, and non-Dora presents that she also loved included a truck with sand toys (she loves playing outside in the rocks on our patio), an ABC puzzle (she LOVES puzzles!), a monkey shirt, a couple of books, and some knee high socks, since that’s all she can really wear with her AFO braces.  Oh, and of course, she had a DORA cake!  (see pic below)

Ren has been doing really well.  She has had NO seizures since February!   She had her meds increased one last time, I have been giving her vitamin E since then, and we had her go to one more cranial sacral therapy session.  So, whether it s due to one or a combination of those factors, it’s working!   Her walking is also really coming along (I put in a very brief video below of her walking outside) — We still need to go in and get a lift put on one of her shoes.  Her left leg is slightly shorter than her right, and the thought is that this may be one reason why she sometimes trips over herself when she is walking with her walker.  She is becoming more interactive with us and her brothers, despite her difficulty with speech.  She has been playing the “What” game with her brothers.  One of them will say her name, and she’ll say “What?” and they’ll say “You’re stuck with it!” and she’ll respond by saying one of their names, and if they say what, she can say “Stuck!” (with prompting).

Despite the nice progress I know she has made, I sometimes,  like just tonight, still get really sad that she is not able to verbalize the way a “normal” five year old can.  I think what’ s so hard is that, I know she IS normal, and to see her not be able to talk in a way that should represent her intellectual abilities is very hard.   Especially because she will be in kindergarten next year.   Sigh.  Any extra prayers for her in this area would be really really great.

Back to the positive side – Ren is also staying really busy.  She is still involved in swimming once a week, and just participated in an adaptive swim meet a week ago.  That was a great time for her and everyone there.  She got some ribbons (see pic below), a certificate, and a medal that she was so proud to have.  She is also in music therapy, which works on fine motor skills, speech, and other things through music.  She LOVES going there once a week.  T and I think she wants to be a drummer.  I’m thinking, though, that starting her out with piano or violin lessons in a couple years will be really great for her.   AND, she has also just started Horse therapy.  There are many possible benefits to that as well, and she seems to really like it so far too.  No pictures for those therapies yet (because T takes her, not me!), but I will make sure I get some soon. 

And, to bring this to a close…we are so blessed to have her in our lives.  Though there are some difficulties and challenges – for us and her – due to her being born with a disability, the blessings far outweigh them.  I thank God for her, and for the beliefs that were instilled in us about the value of life, so that we are able to have her in our lives (see pic below).

I figure it’s been 3 month so I would provide an update on Ren.  Overall she is still doing well.   She is working hard at school, reading books with me at home, walking well with her walker, and as happy as can be.   As has been for quite some time, my greatest concerns are with her speech and her seizures.   Though I know she is making progress with her speech – even starting to answer questions and initiate communication with actual words (today I was on the couch, and she said, “Move!” and at supper she said “Butter!” and I asked what she wanted the butter for, and she said, “Toast!”) – and I am happy about that, it still worries me knowing how so behind she is in her speaking.

Recently a relative of mine inquired about her schooling, and I explained she is at school half days through the 4k program.  She replied with, The regular 4k program?  And though I did not take offense to that at all, it again reminded me of how developmentally delayed she appears.  I say appears because despite her having obvious delays – with her speech especially and therefore her interactions, and her physical delays of course – I just know she knows more that she can show.  Anyone who knows her and has worked with her would most likely agree with me.  I think she is a relatively smart little girl, but she just is not able to demonstrate that.  Language is such a huge barrier for her.  And, yes, I do think there are general developmental delays as well, but I guess I see those as ones she will grow out of, per se.  Another one of our children could not count to five when he was five years old, and now he is eight and amazes me with his mathematical reasoning skills.  He was always our….later developer.  He took longer, but always caught up.  Ren (who is still four) has been counting to ten way before he was able to, and she can’t talk!  (Well, you know what I mean – limited verbal communication).  I take hope in those skills I do see her doing — she’s been saying her ABCs for quite awhile now, she has been able to memorize some addition facts and some simple repetition books, she can spell her name and my name, she can do 24 piece puzzles independently – and though I know that there are tons of kids out there her same age that can do tons more things than those simple skills, I also know that when I think about the barriers she has – her language and her mobility – I think that she is doing okay.

There are lots of words she can say with prompting (As I’m typing this, she says, “I want out” of her booster chair),  including two syllable words, as well as lots of sounds and words she cannot – but her biggest challenge seems to be retrieving the word she wants to say.  She will often go, “I want…” and then has this look on her face like she can’t quite figure out the word she wants.  When I offer a few choices of words, she will say the one she meant.  But why she couldn’t do that without a prompt….is the question.  There just seems to be something in the way….something keeping her from saying what she wants to say on her own.   On the other hand, she is one stubborn little girl too.  I have had two standoffs with her about saying “bye” to people.  Both incidents ended with her in her room, and though I thought I had won, she still will not voluntarily say “bye” to people she knows, even though she can say that word.

So she is plugging away at her speech, with lots of help from the variety of teachers and other staff that work with her.  My other concern, though, is her seizures.  She has had an increase in her medication due to continued seizures.  They are relatively minor still, lasting 1-2 minutes and she remains conscience throughout, but they are still seizures that technically should be controlled by her meds.  Despite the increase in medication, she has had a couple more seizures.  We are awaiting word from her doctor to see if there are any other steps to be tried or not.  In the meantime, I did some more researching and found there are plenty of studies that say taking Vitamin E can help decrease seizures, partly due to the fact that many seizure medications deplete the body’s Vitamin E, and partly due to something with it providing a protective coating on the brain….or something like that.  So, I have just started giving her that, as well as fish oil (which has also helped speech apraxia in some children).  I know I cannot count on these to “cure” her problems, but I am going to try almost anything that may help her.

Again, as I said before, overall she really is doing well.  She is still a very, very happy girl with a huge sense of humor, and can be oh so fun.  Below is a video of her in her walker, being chased by her dad, so you can see some of her progress with walking…and her fun personality.  I have also added a video of her reading one of her books.  At the end, she says “bye!” proving she can do it!   Enjoy!