On a brighter side, Ren’s speech is making some progress. It is still very very delayed progress, but it is progress. Over the summer she had a speech therapist visit our home once a week. In the beginning of the summer, we could hardly get Ren to do more than one syllable (ma-ma, da-da, etc., vs. ma, da), and now she is doing it with ease. She has also picked up some other words as well. She now says on her own: mom, dad, ball, up, more, moo (for cow), and baa (for sheep). And she will say with prompting: boo, woof, no, nana, papa, wah-wah, neigh-neigh, eez (cheese or please), baby, tee-tee (kitty), and many letters/sounds, such as a,b,c,d,e,f,h,i,m,n,o,p,t (She has an animal ABC book, and I say the letter and she imitates those ones, either the letter and/or the sound). I think there may be more, but those are the ones that I can think of now. She starts school again next week – 3 afternoons a week – and I am hoping she has a good speech therapist to help her improve even more…Please pray the school district has hired someone who will help her speech flourish!

Beside the prayers for the healing of her femur, and for her speech, please also continue to pray for a miraculous complete healing of her polymicrogyria (most likely the cause of her seizures and her speech delays), and for overall good health.

Here’s her 3-year-old picture:

Several people have questioned if Ren is getting enough calcium, Vitamin D, and whatnot, or if doctors have suggested certain vitamins to get her bones stronger. Ren drinks a good tall cup of milk each day, plus plenty of cheese, and a multivitamin and pumpkin seed oil (contains calcium, Vitamin D, zinc, magnesium, and other good stuff) each night, and doctors haven’t really suggested anything else. However, I did talk to a nutritionist doctor that Ren sees at SB clinics, and she did have a blood test ordered to check for Vitamin D levels. We are still waiting for those results, so we shall see…

So, another 4-6 weeks in the brace. Just in time for school to be starting up. But, she’s a trooper, and we know another girl with SB who had her 3rd (or is it 4th?) hip surgery six weeks ago and has to be in a full leg brace with a hip band/protector thing for a full YEAR. So, compared to that….I can’t complain too much.

We have been catheterizing Ren for a couple of weeks now, and it is going more smoothly than I had imagined. When she was an infant and had to cath her for a little while, we had these big kits, where we had to lay out these sterile sheets and wipe her with that messy red/brown stuff that I can’t remember the name of, wearing gloves, and it was just a big hassle. Now, I assume because she is older, we can just lay her down, wash our hands, wipe her with a wipe, and cath her. We can let it go right into the diaper, or collect it to measure how much she has. Oh, and because she is bigger than her infant days, it is much easier to do overall…for reasons you can guess. We also just started her on the medication that stops her bladder spasms (oxybutynin), which was also causing leakage. It has definitely worked. She has had dry diapers in between caths since being on it. Even at night. So, this is what leads into the possibility of potty training her. When she is out of her brace, we will start, since it is a big chore taking that brace off and on, but I guess all we do is set her on the toilet and cath her right there. I hope I have that right. I’ll be talking with the parents of our SB support group to learn more. Thank goodness for them! The negative part of the bladder medication, though, is that is causes her to overheat – She has periods of time where her cheeks will be red hot. She doesn’t seem too bothered by it yet, but it still is something to watch, especially in this warm weather.

Ren also just got her wheelchair today. (It only took 4 months to get – oops, I didn’t say that). I think she will like it, and will adjust to it just fine. Here is a video of her on it:

Prayer requests: For her femur to completely heal quickly and for her stiff knee to be ready for movement soon, for Ren to be seizure free, and fracture free, ideally for her polymicrogyria to just go away (ok, that’s a big one, but I believe I have read that nothing is impossible with God!), for her speech to start making big strides, and for general good health.

Luke 1:37 For nothing is impossible with God.

T called 911 still because we think that is what the neurologist instructed us to do if she has a lengthy seizure. The first responders came, but because we had administered the Diastat, they did not do a whole lot except take down information, which they gave to the paramedics when they came. Even though the seizure was slowing down, we thought we should still go to the hospital to get her checked out. I went with in the ambulance, and by the time we left, her seizure was almost gone. However, she had been having it for at LEAST 30 minutes by then. We again had no idea when she actually started, since she was in bed. All three of her seizures have occurred while in bed – Two of them occurred in the morning, and one occurred during her nap time. So, we have not been able to witness the starts of any of her seizures. Supposedly seizures can commonly occur either right as a person is falling asleep, or right as s/he is waking up.

We were only at the hospital about an hour. After getting instructions to increase her seizure medication again, we were discharged. Ren was very weak, tired, and not herself. I know having that big of a seizure is very hard on her body, and the Diastat/valium also mixed up her body quite a bit. That afternoon she slept almost 3 hours. She had a slight fever, and she was unable to keep anything down, not even juice, and did a lot of vomiting. We had her sleep in our room in a pack-n-play, so we could keep an eye on her. The night went well, and she was able to eat and drink some the next day, though she was still not quite herself – very quiet and mellow, and still a little weak and tired.

Finally, today, she is back to her happy self. We are happy to have her back.

Several people have asked me if anyone has given an explanation for her seizures. Well, we’ve had a few theories. The emergency doctor said, she has a seizure disorder, people with seizure disorders are going to have seizures. Another doctor said, she has an infection, and infections can decrease her seizure threshold. (She was diagnosed with a UTI earlier that week on Monday – When we had the urology visit, they took a urine sample and found some bacteria in it, but we had just been informed of it Wednesday evening and had not gotten the antibiotics for it yet. We don’t know how long she’s had the UTI because she was not symptomatic.) I think her polymicrogyria (see previous posts for description) is the main culprit, since I have read that it can be a cause of seizures.

I am very worried about the length of the seizures she has had. A seizure longer than 5 minutes is considered an emergency, so hers of 30 minutes and longer is pretty dangerous. She has not been officially diagnosed as having this, but I have read about status epilepticus (please click on that link and read a brief definition) and I think it sounds pretty much like what she has experienced, and that scares me.

Please pray yet again that she will no longer have these long seizures. Pray that as she gets older, they will not get worse, but instead decrease or be nonexistent. Please pray again that she will not have any damaging, long-term effects from these seizures. And, of course, continued prayers for healing of her legs, improvement in speech, and overall good health are always needed.

Thanks so much….

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, 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!!

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:

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 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.

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!