This is just a short post – I wanted to quick share a video of Renny walking, using her parallel bars, one leg at a time!  Yay!   She is figuring it all out!

The last two months have been fairly uneventful, which is a good thing.  We like uneventful.  However, we have a neat new thing for Renny now.  T made her some parallel bars for her to practice walking.  She LOVES them!  She thinks they are a toy.  She walks/jumps  back and forth along it, for as long as 2 hours at a time.  Today we saw her move her right leg and then moved her left leg, which is more than her usual step with her right, then jump to bring the legs together.  Hopefully with more and more practice she will get the step with right then step with left walking pattern figured out enough to do all of the time.  The OT is also going to bring her a forward walker, since she seems to favor that over the reverse walker.  Here is a video of her using the parallel bars:

Her speech has not had much improvement, though I guess she is saying a bit more vocalizations with the speech therapist.  She does still attempt to copy a word that we ask her to say, such as “duck”, “woof”, “dog”, and other simple words.  Any word that starts with “d” or “b” she will try to say – only at our prompting, and they usually all come out sounding the same (”dah”, “buh”), but she’s trying.  We are often reminded, too, of her receptive language abilities.  Even though she does not talk, she understands.  For instance, one evening we were discussing who was going to be able to go to Grandma’s house across the street, and it was decided which two of the boys could go.  The next thing we know, we turn around and see Renny with her coat and my scarf on.  She wanted to go too!  So, alas, she got to go as well.  And, she knows how to communicate in other ways.  Once in awhile she will just make a decision in her head that she wants to go somewhere, and she will suddenly scoot around, grab her coat and put it on, followed by grabbing my or T’s coat and handing it to us,  followed by her bringing us our shoes and trying to put them on for us.  This is all usually done while we are preoccupied with something else, and the next thing we know, we’re heading out the door somewhere.  Her actions, along with her various toned grunts and yells, easily get across what she wants!

Renny has been going to adaptive swimming once a week as well.  She LOVES it.  She has recently been brave enough to go under the water and hangs onto the edge with just one hand.  She isn’t able to do any kicking in the water yet, but hopefully one day….

We have a spina bifida clinic coming up in a few weeks, where we will meet with various specialists.  Hopefully only good news will come out of those appointments.  And, sometime soon she will have to get the plate in her upper leg removed (from one of her earlier fractures).  Besides that, she turns 3 in April, so she will be starting school.  How time flies…!

Continued prayers for good health, strength, walking, and talking for her.

Here are a few pics: 

Having fun in the pool

Trying on goggles

My new parallel bars!

Renny had another seizure tonight..,but it was a bit scarier in some ways.

After school I went in to get her up from her nap.  When I came to her crib, she was lying on her stomach.  I know she saw me, but she didn’t move.  I figured she was just really tired.  When I picked her up, her sweatshirt was soaked.  I assumed she spilled her drink.  She seemed really limp; again, I thought she was just tired.  However, after I changed her diaper, I pulled her up to sitting, she just flopped, and I noticed that her left arm wasn’t moving, and I noticed that when she smiled only half of her mouth moved.  Okay, something was not right.  And I was worried.  As I investigated a bit more, I felt around her crib and found the wet spot but when I swiped my finger on it, it had bubbles in it, like saliva would.  So, she was paralyzed on her left side, was soaked in saliva, seemed out of it, had a temp of 101….We thought, maybe seizure.  Or a shunt malfunction or infection.  T called nurse advisory, and then took off for the emergency room.  I stayed home with the boys and attended the oldest’s Christmas program at school.  (Though I was worrying too much throughout it to enjoy it as much as I should have).

After a few hours of phone tag and waiting, and packing just in case she has to stay the night, and getting in the car to head out only to be stopped by my mom who is waving the phone at me….T tells me she is probably coming home tonight.  To make a long story short — After talking to her neurologist on the phone, it is presumed Renny did have a seizure.  The theory is that her recent shunt surgery may have lowered her seizure threshold, triggering what would normally be controlled by her current dosage of medication (T did realize that he had forgotten to give her medication this morning.  We have missed doses in the past and nothing had happened, but with this lowered threshold, the seizure broke through…).  So, we are to give her an increased amount at least up until Thursday, when she will have appointments with her neurologist and her neurosurgeon.   They did a CT scan to check her shunt and it showed nothing, and blood tests did not indicate any kind of infection, though I am still a little worried about a shunt problem that perhaps only an MRI would show, because shunt problems can also trigger seizures.   Hopefully meeting with her doctors on Thursday will ease my mind in this matter.  (Blood tests also indicated it was probably not a lengthy seizure, which we feared due to her being in her crib for nap time for quite some time).

As for the paralysis she experienced – there’s some condition called Todd’s paralysis in which a small percentage of seizures can result in.  It causes only temporary paralysis in parts of the body, and has no long lasting effects.  That was the scariest part for me…..but I’m glad it had a good and simple ending.

So, 5 hours later Renny came home back to normal, wanting to eat and eat, and she is now in bed, hopefully sleeping.  We are SO glad that she did not have to be hospitalized, and that everything turned out good for now.

Please pray this seizure was in fact only triggered due to her recent surgery, and that her shunt truly is okay, and that her seizure threshold will return to normal.

Yesterday Renny had surgery on her shunt.  The catheter that goes into the ventricle of her brain was getting too short, so they had to replace it with a longer one.  The catheter acts kind of like a straw, pulling the fluid from her brain up through the shunt and through the other tubing that travels down into her stomach where the fluid deposits.   (Most people have a natural route for this fluid near the base of our skull, but most with SB have that route blocked because the base of the brain has been pulled down over that opening .  Thus what causes hydrocephalus, and thus the need for the shunt).  I think I have that all right…!

We left the night of Thanksgiving to travel the 2 hours where the hospital is.   She was to hopefully have surgery the next morning at 7:30, unless an emergency surgery came up.

The next morning two emergency surgeries came up, and the surgery wouldn’t be until 1:00.  Though we knew that may happen, we were quite disappointed.  We had to keep Renny busy with no food and drinks until 11:30 when we would check in.  We were staying at a Ronald McDonald House, which had a nice playroom for her.  (Thanks to all who donate and volunteer there!)

We checked in early and she was in surgery by 12:30.  About an hour later, the neurosurgeon came back and said everything went very very well.  What he did was open her existing scar where her shunt is, put some type of wiring in through the old tubing, slipped the old tubing out, placed in the new, longer tubing, and then pulled out the wiring.  He seemed very pleased with everything and said that if she was well she could go home later that day.

When we came to the Recovery Room to see her, she was screaming…a lot.  This seems to be her norm after waking up from surgery – the effects of the anesthesia on her, I guess.  Finally, after they put in a Dora movie on a portable DVD player and placed it on a tray directly in front of her (and after giving her more morphine!), she slowly settled down.  A couple of hours later, she had drank 4 bottles of apple juice, scarfed down chocolate pudding, a fruit cup, and a full plate of mac-n-cheese, and was smiling again.  We were discharged by 6:30 that night and went home.

For our post-op instructions, she has only been directed to take acetaminophen and/or ibuprofen to manage any pain, and we have to wait 3 days before we can (carefully) wash her head and then watch for any discharge at the site of the wound.  The greatest risk now is infection.  Though it happens in only 2-5/100 surgeries, if the shunt or tubing areas get infected, then they have to redo EVERYTHING, and that is a big pain.  So we also have to watch for signs of infection, like fever, vomiting, and any behavior that shows she is not well.

Thank you to those who prayed for her.  We are so happy that it went so well!  Please pray now that she would remain free from infection.

Here are some pictures from the surgery.  You can click on each to enlarge:

Wow, I just realized it’s been more than 2 months since I last posted.  But, as I have said in the past, no news usually means good news.  

Last Friday I came home from school and was going to get things packed up for Renny and me, as we were going to drive 2 1/2 hours to the airport and fly out the next morning to Texas for my cousin’s wedding.  Renny was still in her bed from her “rest time” so I picked her up and laid her on the floor to change her diaper.  And as she was lying there, I noticed her right foot looked very….odd.  It was turned completely sideways.  Yikes!  I looked around her foot, and I saw no swelling, no warmth, and she did not feel like she had a fever – all classic signs of her previous fractures.  However there were a few purplish spots above her heel.  I called in T and he didn’t like the looks of it either.  After a brief discussion, we decided that we didn’t want to take the chance of us heading to Texas if she indeed had a fracture.  SO, T drove her off to the urgent care while I stayed home to pack.  After about an hour, T calls and says they took some x-rays, but the doctor there could not see any clear fractures.  However, the radiologist was not there, nor Renny’s orthopedic surgeon, whom had been there just moments before, so they didn’t have a real “specialist” to help.  Still, the doctor had a theory that perhaps she had fractured her growth plate in her ankle, which cannot be seen as easily on an x-ray.  (That seems weird).  So, he wrote down some diagnosis that included the name of some type of fracture and wrapped her foot up in a splint.  We were to keep her off of it and then T would try to get a hold of her surgeon on Monday.

So, we traveled to Texas and everything went fine.  On Monday, T calls the doctor and after some run around (they were going to give Renny some different doctor to work on the fracture – something about urgent care protocol, but after some “discussing” T convinced them to let her regular ortho surgeon take care of it), an appointment was set for Wednesday (today).  I could continue on with all of the details of the appointment, but the basic gist is that the surgeon could not see any type of fracture, thought the foot looked fine, and declared there is no fracture.  So, after all of that, it was nothing.  That’s okay, though, I’m okay with nothing!   I would not have wanted another 6+ weeks of more set-back.  T thinks we should watch her foot still, though, because he isn’t convinced that there is NOTHING wrong.  He’s thinking maybe hyperextension or something.  Hopefully, though, it is all fine.

The other set of good news is that Renny is for the first time EVER beginning to purposely make certain sounds, and even try to put the sounds together in an attempt to form a couple of words.  This is HUGE.  She has never EVER tried to imitate the sounds or words we make, and now in the last couple of weeks, she has started.  Baby steps.  She has tried to say the word “light” (Liiiiiiiii……) and “up” (I haven’t heard this one), and today she tried to say “cheese” (sscchhheeeeeee……..) and “yo yo”  (yyoooooo…..ooooo), (those seem like some strange choices to say!) and also other sound imitations that we do for her.  The “light” one is bizarre  considering our 5-year-old twins can barely say /l/ words .  But, I don’t care – I feel this is a HUGE breakthrough, and my hope is that the words will just keep coming more and more.   I am so excited for the possibilities….

Also in the past month or so, Renny has finally been purposely moving her legs when we have her in her walker.  We have always had to move her legs for her, and she is now trying on her own.  She has to move the whole leg, using her hips for big help, but it’s moving.  Her left leg more than her right, but again, Baby Steps.  And I see this as hope toward bigger possibilities….

AND, finally, Renny has not had any more seizures.  (Thank the Lord!)

Prayer Requests:   That Renny will be able to avoid catching the flu (T has it right now…), that her talking baby steps will continue to grow and grow, that her brain will figure out how to work with her legs to get the walking motion down, and – for future reference – she will have a shunt revision surgery on November 27th.

The Splint

Renny in the airplane to Texas

Renny and me waiting in the airport (and eating ice cream!)

So yesterday Renny had an appointment with the neurologist.  Good news!  The EEG showed nothing abnormal.  This means it does not appear that her brain is in a condition that would be susceptible to seizures.  (I don’t think this automatically means she will never have a  seizure again, but her brain is at least not “set up” for them as of now).

So that was good to hear.  Next, the neurologist looked at the MRI images, and….didn’t really say anything.  So then we brought up what the neurosurgeon had said, about seeing polymicrogyria at the back of her brain.  He said, “Hmm,”  and looked around more carefully.  At first he didn’t really seem to see it – and he made a comment about how the radiologist didn’t write up anything about it either – but as he was looking he made a statement about our neurosurgeon being one of the smartest men, like, ever, and so if he says she has it, she most likely does.  After some more looking, and some help from T as to where he found it, he decides he does see something that could be it.  However, he does not seemed concerned about this at all.  He just says it that yes, it may be there, that it’ll just be part of her brain structure, that we won’t do anything differently with her; she’s getting speech therapy, we’re working with her, etc; he just seemed kind of nonchalant about it all.  Okay…I guess that’s good…

In the meantime, Renny’s speech therapist is now working on some visual aids for her to communicate with us – pictures of common items and situations (dinner time, eg.) for her to point to, called a choice board.  She has yet to show interest in this, but…We will also work on teaching her more signs.  I’m still hoping and praying, though, that she WILL learn to talk in the future…as well as walk…

In summary:

EEG good.   MRI…okay….maybe.  God is good!  Thanks for all the prayers…Keep ‘em coming!!!

Shortly after my last post, Renny started to become more like her old self.  In fact, it really was after her checkup with neurology, where she was making us out to be liars that she seemed to get better.  So, we had a good almost-full week where she was pretty much back to normal.  The sleep-deprived EEG went okay.  T woke her up at 3 a.m. and stayed up with her until 6 a.m., and then I took over until 9:00.  The appointment was at 10:00.  She had to have 25 electrodes “glued” to her head, and she did not like that AT ALL.  After 20 minutes or so of that, we had to get her to go to asleep, but she was so worked up it took at least 15 minutes or so to calm her down, and she did finally fall asleep in my arms.  After 15 minutes of sleep time, we had to wake her up again.  A bright light did some various flashing for a few minutes, and then all of the electrodes were taken off with some latex-free lubricant stuff, and then we washed her hair quickly and left.  The whole appointment took about an hour and a half; we were home by noon and she slept the whole afternoon.  We will learn the results from the test on September 10th.

So, that was last Wednesday.  Then Saturday comes, and Renny wakes up with puffy reddish eyes.  I think perhaps it’s pink eye.  No big deal.  But then throughout the day, the puffiness and redness gets worse…and we see some rashes here and there on her arms, leg, and a little on her face.  T does some researching and finds that an allergy to her anti-seizure medicine, phenylbarbital, can show up even up to two weeks after first administered.  We call nurse advisory, who says all of the signs point to an allergy, who talks to the neurologist on call, who says to take her off the phenylbarb and makes a new prescription for a drug called keppra.  This sounded good to us, because we also worried that perhaps her latex allergy was jumpstarted somehow.  She had taken all of her clothes and diaper off during her “nap” time that day and pulled the sheets off the crib, so she was just on the mattress, which is vinyl, which usually has latex.  But, we left it at assuming it was the medicine.

So, Sunday we fill her new prescription.  I love it!  With the phenylbarb, it came as a small pill, and we had to hide it in food for her, either whole or crushed, but she started figuring this out and was not wanting to take the food or was spitting the pill out.  The new stuff came as a grape-flavored liquid, administered by syringe.  Yippee!  (The things I get excited about…) BUT, throughout the day Renny’s eyes are extremely puffy and very very red.  She just looks miserable.

Our oldest son had a doctor’s appointment on Monday, so we decided to take Renny with as well to try to get her pediatrician to take a look at her, just to see if she saw anything else.  We get her in, and after talking with her for awhile, she has Renny come over on my lap and gets a good look at her.  After one look at her eyes, she says, Oh!  That’s adenovirus!  Say, what?  It’s called a summer virus, characteristic with the very red eyes, and the swelling and rash can sometimes accompany it.  And no real drugs for it, it just has to run its course.  SO….that’s that!   For now, though, we’ll keep her on the keppra.

So, today (Wednesday), she had an MRI in the morning, followed by spina bifida clinic in the afternoon.  This is when various specialists (urologist, neurosurgeon, orthopaedics, OT, PT, etc) rotate around and come in to examine her and check things out.  Most visits were fine and with no real areas of concern.  However, that is not necessarily the case with the neurosurgeon.  He looked at the MRI results and explained that Renny’s backside of the brain was a little off, structurally wise.  He said it was called Polymicrogyria, which can cause a person to be prone to seizures and developmental delays.  When asked if this may be why she isn’t talking yet, he said yes, most definitely.  Wow.  When asked if this was a permanent thing, he said, yes, in the sense that she may always have developmental delays, but that the speech could very well come, just much later down the road than normal (obviously), and that a lifetime seizure disorder could be a possibility.  He did not necessarily state that she was doomed, but he also didn’t really give us any encouragement in any way.  We felt a little depressed after that.  Along with all that, the catheter from her shunt that goes into the ventricle in her brain is “getting short.”  So, that will need to be replaced within the next 3-6 months, which means another surgery for her.  Ugh.

Though depressed about this news about her brain, T and I discussed how we know that she is young and that the brain has a great capability to change and grow through stimulation, and we just need to work more with her to try to do this.  Right?

We are so ready for a stretch of uneventful “stuff.”

Prayer Requests!!  Please, please pray for her brain to “outgrow” or “overcome” this structural problem, or really to just “get better”.  Please pray for her ability to speak.  That she will not have any more seizures.  That she will learn to walk.  And that she will not have anything else “go wrong.”  Thank you…..

It was a long week with Renny.   She left the hospital with two prescriptions:  phenylbarbital (anti-seizure) and amoxicillin (antibiotic).   The first few days after returning from the hospital were…awful.  She was so irritable, uncomfortable, whiny, flailing herself around, needing constant attention, oh, and diarrhea…just not good…and just…high maintenance…constantly.  And obviously we felt horrible that she was feeling so bad inside.  We called the hospital on Sunday to explain our concerns; they told us to call neurology on Monday if she wasn’t any better.  We called neurology on Monday to explain our concern; they told us to call her pediatrician on Tuesday if she wasn’t any better.  We felt that we were just brushed off both times and were not very happy with that.  But, we waited until Tuesday to call pediatrics and talked with Renny’s nurse.  Finally, someone who was interested in our concerns.  After listening to everything, she talked with the doctor, who talked with the urologist, whom both decided that Renny did not need to be on the amoxicillin, something about the extremely minute amount of bacteria in the culture and how it may have just been a contaminate and not an infection.  In any case, we were glad to take her off of it.  I had amoxicillin once many years ago and had extreme stomach cramping from it.  It was theorized that perhaps this medicine was a main culprit of her irritability and most certainly the diarrhea.

Wednesday morning arrived, and Renny woke up….an…almost new person.  Though still not herself by any means, she was noticeably less irritable, and a little happier.  Though relieved that she was better, we were still concerned because she still was quite far away from her normal self.  Still quite high maintenance, needing a lot of attention, especially because she wasn’t just sitting down and playing like she used to.  She seemed somewhat happy when moving around, climbing on the couch, rolling around on the bed, etc., but that’s it, and that’d be find except we just really couldn’t be with her moving her around all day!

So, Friday came, along with her neurology check-up appointment.  We expressed all of these concerns with the doctor, and of course Renny was as happy as could be in the room, so she made liars out of us!  No, they did believe us, and told us to basically give it a month, and if she still seems irritable and/or her personality is still not quite the same, then they can try a different medicine.  The reason they do not try a different one now is because there are very limited available/approved anti-seizure medications for children under 3 years old.  Phenylbarbital has been around for like 60 years and has much evidence for working, so they like to stick to that one if possible.  It was also explained again that it was of great great concern that her first seizure was so long.  The neurologist said that they get concerned even after a 15-30 minute long seizure, and also why it is so important to prevent further seizures, by using the medication.  Having one seizure brings higher risk of having another, so we need to try to prevent it.  When asked about possible damage caused by the seizure, he said it is uncommon, but not a given, and also reassured us that if she had any damage we would have noticed by now.  Overall, we think she seems okay cognitively, but with some of her non-usual self behaviors….I guess right now I am assuming (hoping) it’s the medication.  When I was in the ambulance with her on the way to the hospital, that’s all I was doing, was praying, praying, praying, that she would not have any long lasting consequence, no damage done to her brain.  I found out later that that’s what my husband (T) was praying for the whole time too.  She seems to be doing all of the same things as from before the seizure – making her signs, nodding yes and no to questions, yelling at her brothers, playing with her doll, etc.  She does act a little loopy at times (!) but again I’m hoping this is the medication.

Since Friday’s appointment, Renny does seem to be getter a little better each day.  Again, she is still not totally back to her normal self, but she is starting to need less attention, starting to play a little by herself, and more happy.  Again, if after a month these side effects hadn’t disappeared, then they would try a different medication.  The plan is, because of her age, to keep her on for 18 months, in which the hope is her brain will “outgrow” this seizure tendency per se.  Then they will slowly wean her off over several weeks, to allow the body to adjust.  Sadly, after taken off medication, she may have a 50% chance still of having a seizure.  This depends, I guess, on the results of her EEG tests.  We have to take her to have her first sleep-deprived EEG in a few days.  We have to wake her up at 2 a.m. and keep her up until 10:00, when her test is.  This will give a “baseline” of her brain activity, and because sleep deprivation can trigger seizures, (which hopefully she will not have one) this will catch the brain action during this state.  Or something like that.  She will start awake, then hopefully she will fall asleep, and the after a bit, they will wake her up suddenly with lots of flashing lights and stuff.  Somehow they will get a “normal” or “abnormal” read from this EEG and then do another one after the 18 month period to compare.  If it is “normal” both times, it gives her a better chance of not having another seizure.  I think I got it right.

Then, the following week, she goes in for an MRI of her brain, to get better more detailed pictures of her brain, specifically the fluid in her brain controlled by her shunt.  This will be good timing, as her neurosurgeon from her birth shunt-surgery will be in town that day, so he can look at the images as well.  Not sure if it would be good or bad to find something there.

SO.  Renny is slowly recovering…as are we.  It’s been a long process.  Stupid seizure.  Still mad at it.  But, we are getting through it.  And I am thankful that she IS recovering.

Prayer Requests!    For God’s hand in her healing:  That Renny would FULLY and SOON recover from the seizure and the side effects of the medication.  That she would NOT (ever) have another seizure.  That the EEG  and MRI have good results.  That there would be no other bumps in her road anytime in the near future.

Thanks!

Renny had a  seizure – her first seizure –  2 mornings ago.  It was not a good experience.   I “happened” to have a meeting that morning and so was up earlier than normal, and I “happened” to go into her room to check in on her – I rarely do this – and when I walked in I heard some strange noises coming from her and when I looked in her crib she was seizing.  We had no idea how long this had been going on.  I immediately grabbed her and brought her in our room, where my husband quickly checked the Internet, which said if it was a first time seizure, to call 911.  In less than 3 minutes the First Responders came, followed shortly by the paramedics, which by this time the seizure had been going on for at least 10 minutes.  Once in the ambulance, they tried getting an IV in her to give her medicine, but they couldn’t get it in, so they gave her a shot instead, which I guess was the same medicine but took 10 minutes to work rather than the IV’s immediate effect.   She got a second shot halfway to the hospital, and once there they finally got an IV in.  The shots had slowed down the seizure activity, but even after the IV she was still doing some twitching somewhere between 7:30 and 8:00 (I can’t remember exactly).  SO, her seizure lasted at minimum of 90-120 minutes, possibly more, since we don’t know when it exactly started.  We find out later that a seizure of even just more than 5 minutes recommends emergency treatment (at least for the first time seizure), and even 30 minutes is seen as a prolonged seizure.  So, she had quite the lengthy seizure, and it was hard on her poor little body.

After a variety of tests,  to check for infection and whatnot, they also did a CAT scan to make sure there wasn’t a problem with her shunt.  None of these tests showed anything.  They talked about tapping her shunt to check the fluid to see if there might be an infection there, but since they saw no other signs pointing to an infection, they decided not to (to avoid other possible risks from taking the tap).   It was a long day – most of it is a blur actually.  She slept most of the time, due to recovering from the seizure and also from the medication in her.  She stayed the night for observation.  We learned that she is going to be on anti-seizure medication for 18 months.  They have no definite cause for the seizure, but they did find in her cultured urine sample a strain of bacteria she has never had before.  So, this means she did have an infection, but it only could have triggered the seizure if it had caused a fever first (which actually would have been the trigger), but we don’t know for sure if she had a fever beforehand or not.  She had cried 2 separate times during the night; I checked on her the first time, my husband the second time, and we both noted to ourselves that she felt warm, but we attributed it to  a warm room.  So, she very well may have had a fever from the infection and triggered the seizure…..but we don’t know that for sure.  It will most likely be ruled a prolonged seizure due to “unknown” cause.  Febrile seizures, which you may have heard of, happen with young children, triggered by a fever, but are usually less than 15 minutes long, so I do not think they will classify this as a mere febrile seizure.  Having spina bifida did put her at a slightly higher risk of having a seizure, but it is still not “common” for individuals with SB to have seizures.  There’s a lot more info on seizures, but too much for here.

For now, Renny is home, but she is very worn out.  The medicine is also making her feel very unsettled, restless, off balance, and tired.   Her body will supposedly adjust to the medicine in a few days to a week and she will no longer have those side effects.  We go in for a follow up check later in the week.  The pediatric neurologist was unavailable when we were in the hospital (we met with his PA/assistant and the adult neurologist while there), so we will be able to meet with him at this check up.

Please pray for Renny, that she will recover completely from this seizure, which was so long and hard on her body.  Pray there will be no long lasting consequences/effects, that she will quickly adjust to the medicine, that she will bounce back to her normal self, and that she will not have any more seizures.  (I know many people have a seizure disorder, but the length of her first is of concern.  It would not be good for her to experience another one, especially of that magnitude. )  I will update again after her check up next week.

We are supposed to be working with Renny on her walking every day.  We don’t.  We should, but we get busy, put it off, and….you know how things go.  It’s such a hassle getting her in her big brace, and she hasn’t been the most cooperative the few times I did try to practice with her.  Yes, poor excuses, I am aware.  We do have her stand in her stander everyday, at least once or twice a day, and I do try to practice crawling with her each day.  And I’ve started helping her move up and down the stairs (with much help, obviously) to provide further strengthening of arms and legs.  And of course she is always moving around on the floor and climbing up our couches and so forth.  BUT, we have not been very good at strapping her in her big tall HKFO braces and working with her on walking with her walker.

So, two days ago, we decided to try to film her practicing walking.  Amazingly, she was very willing to work that night.  It may have been the camera – she likes to pose for cameras.  In this video that you are free to view, she did really, really well.  I have to hold on to her hips usually, and move her legs for her while holding on to the walker so it doesn’t roll away.  As you will see, I was able to let go of her several times and she was able to stand on her own (holding on to the walker), which shows she is bearing weight much, much better nowadays.  She has never, ever moved her legs forward in a walking action on her own before….until that night.  It was very quick and subtle, and she used mostly her hips to move it, but she moved her right  leg forward all by herself.  We were so preoccupied with everything, we didn’t even figure out until later that – yes, she had taken her first step!  Very cool.

The next day (yesterday) she had physical therapy and of course would not cooperate.  But I have made a vow to really, really, try to practice with her everyday.  And, I did this morning!  So, I’ve kept my vow for one day.  Let’s see how I do tomorrow, and the next day, and so on.  That one accomplishment, that one first step, though, has made me more motivated to take the time needed to practice with her.  Since even before her birth, I have had the hope/confidence/belief that she would walk, and walk well.  I suppose we play a part in that happening.  And, the challenge is on….!

Prayer requests:  That Renny would soon start saying words, God’s hand in her learning to walk, and continued good health.

Here is the video: