Today Ren had her bladder urodynamics study/test. The results were….neither good nor bad.

We did not receive the most ideal news of not needing to catheterize her – which, I pretty much expected yet still hoped for. Overall, her bladder pressure actually looked pretty good. So, that is good. However, her bladder is having some spasms, which causes some leakage, and she does not fully empty her bladder all at once, leaving some residual urine. All of this isn’t necessarily horribly bad right now, but these issues would make it more difficult in the future for potty training, and could potentially lead to some problems in the future for her kidneys. Because of these reasons, the doctor is recommending cathing her 4 times/day, plus taking some medication to help with the bladder spasms/leakage. All of this is precautionary measures, but are pretty typical for someone with spina bifida, including her irregularly shaped bladder that her local doctor seemed worried about. Most – if not all – individuals with SB have some sort of bladder problem/s, because the nerves to the bladder are on the lowest part of the spine and SB is a defect on the spine. So, even those with a very low defect will have their bladder affected somehow.

The doctor we saw today will forward the results and his notes/recommendations to our local doctor, and I am assuming we will meet with him soon to discuss the plan for Ren. Though a little sad about the news, I knew it was practically inevitable, and I also know cathing will just become part of the routine, and when she is older, she will learn to do it herself with relative ease. It will all be fine. I am just glad there was no real “bad” or alarming news. The news we got was what we were prepared for, and it is “normal” for someone with her diagnosis. Not good….but not bad.

So Renny is now out of her cast (yes!) and back into her full leg brace, which she will be in for 5 weeks total, so beginning/middle of July. Though not as fun as being without the brace, it is SOOOO much better than being in that big cast. She can actually SIT now, on the floor, in her bed, on the couch, in her carseat. I didn’t realize what a blessing it is to be able to sit! She gave us a scare last week, when I went to check on her before I went to bed (I do that every night), and she was OUT of most of her brace. I had pinned the part by her fracture down, knowing she has gotten out of her brace in the past, but I obviously was not thinking about WHO my daughter is. She has been called Houdini for a reason. She gets out of braces, carseat straps, MRI straps,….I should have known. So, I began freaking out about what she may have done to her not-totally-healed fracture, and emailed many friends asking them to pray for her leg to be okay. I couldn’t sleep that night, prayed all night, because I did not want her to have damaged her leg. The next morning, her leg looked okay, and it has looked okay since – no swelling, hotness, or fever – all usual signs of a fracture, since she usually can not feel the pain to let us know it hurts. SO, thanking the Lord for that! (I have since pinned each part of her brace (the velcro parts) and she hasn’t gotten it off!)

So, now Renny is being as active as she can, as usual. I don’t think the doctors realize exactly HOW active she is. She does NOT like to sit still. She is always on the go – still – walking and/or swinging back and forth on her parallel bars, scooting around, wanting to be everywhere we are and wanting to do everything her brothers do. Today I was playing catch with the boys (teaching them how to catch with a baseball glove), and she yelled and yelled to join in, and in the end I had to give her a glove too and I played “catch” with her for awhile as well.

She is doing a little better with her speech. Relatively speaking. I have been working some with her on making different sounds. She can say most sounds in our language, but cannot put many of them together. For instance, she can say the sound /u/ and/p/, but she cannot put them together to make the word “up.” However, she can say words that are a consonant followed by a vowel, like “ma”, “da” (which she is now saying for T, instead of calling him “ma” like she always used to!), “baa”, “moo”, and, her newest one, “boo”, which she will yell when playing peek-a-boo. She is also doing a lot more imitating of signs, so if I teach her a sign for something, she will copy it right away, something she didn’t seem too interested in before.

In a past post, I mentioned that Renny has a diagnosis of polymicrogyria, which means “many tiny folds” in the brain, and had been a theorized reason for her delay in speech. Since then, I have discovered there are several different types of polymicrogyria, but I am unsure of Ren’s type. It is a fairly recently discovered disorder, and so I could not find a lot of information. But, there is a book called “Schuyler’s Monster,” by Robert Rummel-Hudson, written about his daughter, who has a type of polymicrogyria called bilateral perisylvian polymicrogyria. I have not read the book yet, though I would like to – though I’d like to find out what type Ren has first – but the author has several videos on YouTube, and I wanted to show one in particular, where his daughter is reading, to show how much the condition has affected her speech.

As with spina bifida, not all children with polymicrogyria are affected the same way – Each child has a unique situation – So this does not mean Renny will have the exact same difficulties with language as Schuyler, BUT it does show an example of how her polymicrogyria could affect her. I am hoping with early intervention and lots of working with her, and lots of praying (hint, hint!) that she will be able to work through it all and get her brain to figure out how to put those sounds together into words.

One last topic I wanted to mention is that Ren has a urodynamics study/test next Monday in a bigger hospital. This will probably determine if we will need to start catheterizing her. It will take a closer look at her bladder, which appeared to be having too much pressure in the previous test. I have been giving her pumpkin seed oil since then, because I read it can help with the bladder system, including bladder pressure. I know it is/was a long shot, but I knew it couldn’t hurt. Please pray that her bladder looks better, that she will not need catheterizing. As I said in the past, I know it will not be the end of the world if that is the result, but, still….

I soon hope to look into getting a hand cycle (tricycle she can pedal with her hands), and she should be getting her wheelchair soon, both of which will make it easier for her to be more independently mobile. I will update on those as they come…

Again, please pray for her leg to heal completely and correctly, and for our stretching of her leg to help loosen her very stiff leg, so that she can be ready to be totally out of her brace in a month. Also pray for the speech area of her brain, that her brain will be able to figure everything out, despite the challenges. And please pray for good results of her test on Monday.

Thank you for all of those who have been and continue to be such great supporters and prayer warriors for Ren and our family!!

In one of my previous April posts, I wrote about how Renny had surgery to remove a metal plate that was from a fracture a year ago, and that she’d have to be in braces for six weeks. Two weeks ago, she got the okay to be out of the braces, and back in her new KAFOs (small leg braces). I just KNEW she was not ready, though, because her right knee was not even bending at a 90 degree angle. But, I thought, well, the surgeon had to have noticed that, and if she didn’t say anything about it, then it must be okay……I should have listened to my instincts. I should have known better. The next day or so she was bouncing on her legs so much that she was now suddenly bending ALL of the way in her knees….and the next thing we know, she has a warm, swollen knee area. T took her in the next day, and she had a fractured knee. She was put in a leg cast, for three weeks. Well, or so we thought.

A few days later, she is sitting on a little kid picnic table, and she leans forward, or twists her body weird, and she begins wincing. I take her up to change her diaper, thinking she just bumped her head or something, but when I lay her down and lift up her leg…it’s limp. I knew something was not right. And, it wasn’t. The next day (Wednesday) we take her in to get it x-rayed. She has another fracture, right above the cast. And, it needs a metal PLATE, so she needs surgery…again…and a hip spica cast….again….for six weeks….again. T and I are just broken. We were so looking forward to moving forward, to Renny moving forward and progressing, working on her walking, summer just around the corner….and then this.

She has surgery that night, and I stay the night at the hospital with her. The surgeon has changed her plans. She will wear the spica cast – which is fully on her right leg and then wrapped around the waist, leaving her left leg free – only three weeks. Then, if her bone has calcified enough, she will take the cast off and we will put her back in the full leg braces to continue to protect the bone while being able to take her out to stretch it and do range of motion exercises, for another three weeks. During the surgery, she also put some bone…graft…something or other on the bone to try to get it strengthened faster…or something like that. Also, after her bones are all healed up, she wants to have her take some medicine that is used to strengthen bones, like for individuals with osteoporosis, except it would be taken through an IV, once every three months, for a period of a year or two. Though this plan sounds better than the original, I am still not loving it.

(In my conversations with people about the situation, I have had several people ask why she fractures so much. I will try to summarize it accurately: The main reason is that individuals with spina bifida tend to have weaker bones because they are not weight bearing, walking, running, and jumping as much as a “normal” child, and therefore the bones do not receive the appropriate stimulation needed for growth, therefore resulting in weaker, less dense bones. Her orthopedic surgeon has told us that Renny’s femur bones are as big as her (the surgeon’s) pinkie. That is not very big! The weakness compounds when she has been immobilized for a long period of time. Every fracture she has had has occurred after a surgery of some sort and being in a cast or, like before, in her long leg braces. This is why, also, we have been told to have Renny standing as much as possible in her cast, so she is doing some weight bearing, and also part of the reason why the surgeon is going to cut the time in the cast, as well as to alleviate some of the stiffness that also occurs in the joints during cast time.)

It has only been two days since she came home from the hospital. It has been difficult. Though she is finally her happy self again, she cannot sit. She can only stand, and even then she must have one of us by her to make sure she doesn’t fall or twist weird (and hurt her OTHER leg or hip) – or she can half lie down in her wheelchair, which she isn’t too fond of. So, she is pretty high maintenance. And heavy. If this continues, it will be a very very long 3 weeks. I am looking into getting a second opinion at another healthcare facility, just to see if they have any other recommendations for treatment/aftercare, to stop this vicious fracture cycle.

So, not good news. And though we are still very upset and unhappy about the whole situation, we will get through it…again. And we will learn through this and we will trust our instincts more and what we know about our daughter, and look into other options as needed. I think we were too trusting of the doctors – not that they aren’t good, they just don’t always know everything about our child and her disability like they should. And so, I ask for prayers again. That Renny’s bones will heal and strengthen quickly; that if there is a better route that a second opinion consultation would reveal that; that her muscles would become stretched in good time; that there would be no more obstacles….

Here are pics of her new cast:

Ren had a test done on her bladder last week. In early March, at a bi-annual spina bifida clinic, she had a routine ultrasound check on her bladder and kidneys, to make sure her kidneys are okay. Because of her neurogenic (weak/not fully functioning) bladder, there is always the concern that it is not doing its job all of the way and that there may be reflux in the kidneys. Though there was no reflux, there seemed to be some enlarged areas in her bladder. So, they set up this test (VCUG) to check it out a little more. As it turns out, Ren’s bladder is protruding in some places, possibly indicating there is too much pressure in her bladder, and the urologist wants us to start cathing her four times a day, plus take medication. He also wants us to take her to another hospital 2 hours away to get a more thorough urodynamics test done to find out more information. T somehow convinced him to have us hold off with the cathing and meds until she has the urodynamics study, which will be in June. In the meantime she continues to take antibiotics every day to ward off any possible infections. I am a little worried that the inevitable will be that she will have to be catheterized from now on. Not that that is the end of the world – most individuals with spina bifida do need some sort of cathing regimen – but it still makes me a little sad because I thought she would have that one extra little blessing of not having to do it. So, we will know more, though in mid-June.

Also a week ago, Ren turned three! What a great milestone. All of her aunts, uncles, and cousins, plus grandma and grandpa and Aunt Jane, from my side of the family came to celebrate (Ts family lives too far away for a weekend trip!), and it was a perfect day. She had her Dora cake, she loved her presents, we all went outside a flew kites and went for a walk to the park – It was very nice.

Because she is now three, she was able to start school too – three afternoons a week – and has gone twice so far and LOVES it. I’m so happy that she transitioned to it so easily – though I guess I am not surprised given her good natured easy going attitude. She is receiving speech therapy there and as soon as her big leg braces come off (in less than 2 weeks!), she will also receive physical therapy, plus all of the regular classroom activities and interactions that will be so good for her. She still is not talking, though she for the first time spontaneously said, “moo” when she pointed to a cow in a book – All other little words she has said have been due to our prompting. So, a glimpse of hope there….

Please pray for an accurate and relatively good diagnosis from her June urodynamics test. Also pray her legs will quickly adjust and regain strength when she transitions out of her full leg brace (her right leg that was operated on is already very stiff) in a couple of weeks. And as always, please pray for no more seizures, for her speech to improve, and of course no more fractures or surgeries needed for a long, long time!

Here are a few pics:

Renny had yet another surgery two days ago. This time it was to remove a piece of hardware/a plate from her femur, where she had fractured it a year ago. Though a simple surgery, and she recovered very quickly, she is now again confined, to a full leg brace this time (at least its not a cast). She is to be in the brace full-time, including while she sleeps, for 6 weeks. The brace is kept locked, so she is unable to bend her knee, therefore no walking or even crawling. Her legs must be fully supported when sitting or being carried. She supposedly is allowed to bear weight, if in the cast and in her stander – which we need to get back from Birth to Three. We had them take it away because we thought we were done with it! The purpose of these restrictions is to avoid yet another fracture in her femur, since the plate had been helping support it while it healed from its previous fracture, we don’t want to put too much pressure on it while the bone gets used to being without that extra support.

Renny was extremely crabby about this new situation. She is a go-getter and we call her the mountain goat because she is always climbing all over the place, so she is never happy when she loses this freedom of moving about. However, we have a temporary wheelchair here for her, so she can sit in it and watch her favorite shows (Dora and The Wiggles!), and she even moves herself around in it a little bit. She is actually having a permanent wheelchair being made for her currently, since she needs one for when she starts school next month when she turns three. But, that wheelchair isn’t ready yet, and the one she has now is a 12-year-old one and has a bigger seat so she can have both of her legs fully supported while in the straight leg brace. Last night I also placed her on the floor, and she was very excited to realize she could still kind of scoot around on her bottom with the brace on – not as well or as fast as normal, but still something. Oh – and she will probably be able to get back to swimming after a week or two, which is good, since she LOVES swimming.

Hopefully this will be the last of surgeries for many years. Thankfully she is such an easy going, pleasant, wonderful little girl who learns to adapt and adjust to her situation and just goes with it. Please pray for a quick healing and strengthening of her femur – so no more fractures, that these six weeks will go quickly, and no need for any surgeries for…well, a long time, like many many years. Here are just a couple picture from before and after her surgery.

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!)