Things had been going really well for Ren lately – but she did have another small seizure the other day. This time it occurred during school, and the teacher she was with at the time did not even realize it was a seizure until it was almost done. She estimated it lasted about 2 minutes, and Ren had continued on with her activity (looking at a book and getting a new one) but she did keep slipping in her chair. She had another small seizure a month ago, and so because of this, they are considering increasing her medication again. This time the neurologist would like Ren to come in for an appointment as well. I am hoping it is only because of her growing that she has these breakthrough seizures, and that there will never come a time when medication will not cease her seizure activity.

However, despite that not-so-great-news — and again, I am still very grateful these seizures have not been the former grand mal she used to have — Ren has been doing really well. Her talking – though still very delayed (I would guess she is at a 24 month developmental level, maybe? and she is 4 1/2 yrs old now), the sounds and words she is able to produce, especially when prompted, has just increased so much since September. She has just excellent, wonderful teachers who work with her and challenge her and care for her greatly. She is able (and more willing!) to imitate words, and her ability to say 2-syllable words has improved a lot. Before, I would have to have her imitate one syllable at a time for every word, and now she can say some two-syllable words (words frequently used or words she has practiced, such as “Dora” and numbers and some colors, and her brothers’ names) without prompting, and said altogether. I did videotape her again reading a different story (“Monkeys! Monkeys!”) and counting 1-10 (see below). We still have the issue of her not using all of the words she is able to say without prompting, in order to communicate. She will say the phrase “I want _______” at home on her own, and she will yell our names and count and say the ABCs all of the time but we’re still working on having her more independently use her words to communicate her needs. HOWEVER, she knows how to communicate in other ways, to get her point across, and she knows exactly what is going on, understanding everything that is going on around her and everything that is said. I know she knows a lot — I just hope she will someday soon be able to verbally demonstrate it all to everyone.

Ren is also doing well with her standing and walking. She is constantly on her feet (with her AFO braces on), pulling herself up all over the place and “creeping” along furniture. Her recent favorite place to sit is on her kitchen playset in her room. She will take the little sink out and sit right in that spot. Though she still does not use it often, she also will climb up to her walker and do a little walking with it. She uses it a lot at school to move from place to place, and so that is great! She will sometimes try to stand on her own, too – briefly letting go of our hands, or of the furniture she’s holding onto, like a game.

She is just such a funny, delightful little girl. She makes everyone laugh! Her speech teacher tells me stories of her sessions with her, and how she brings a friend along with her and Ren will make her friend laugh so hard that she has tears coming down her face. I am so happy with how things are going at school — I just know she will continue to make great gains in all areas this year.

Please pray, as her brothers do each night, that Ren will one day be able to “walk and talk.” But, also, that her medication will no longer have to keep being increased – that her seizures will cease. Enjoy the videos and pics below!

No news still means good news. Ren has been doing really well. She did have a few “regular”-less-than-a-minute-long seizures in June and July, but her medication was increased and she has not had any since then. There are a few theories as to why this happened, one of them being that since she is getting bigger, more medication is needed. We are still thankful, though, that she has not had a major grand mal seizure for a year now.

Ren is in 4 year old kindergarten and loves it. She loves having girls in her class, and her teacher says she has lots of friends and hangs out with a different friend each day. She is walking well in her walker there, moving around the room in it and even transitioning into a chair on her own. She was not making any sounds at all at school the first several days, so after seeing a video of her “reading” a book (see below), and seeing what she is able to do, the teacher decided to expect a bit more from her and, after a little battle of the wills, Ren has since then has been using her words more. (She is SO strong-willed!! Good for many things, but a nuisance sometimes too!). Though still very delayed of course, her speech has come a long ways. I have included a couple of videos; one of her reading the book, and another with her saying her ABCs.

Ren also recently started playing baseball through the local Miracle League (see pic), which has a special wheelchair accessible baseball field and each child has a buddy to help them play, and she is also still involved in adaptive swimming lessons, where again the children are paired up with a volunteer. She enjoys both of these activities a lot!

So, Ren is the one in school, but she is the one teaching me all of the time. One day a few months ago, a quick appointment to check her ankle turned into a long afternoon of leaving the clinic to come back in an hour, with a trip to the eyeglass place to pick up T’s glasses in between appointments that involved a very slow and unhelpful worker that caused me to not be able to get the glasses in time because I had to be back to the clinic, which ended up being almost an hour behind anyways. This whole time I was so crabby I could hardly stand myself. And here’s Ren, happy as can be, none of this bothering her one bit. That is just a small example of how I need to follow HER example. Her constant cheerfulness, determination, and ability to overcome all of her many obstacles in life with a smile on her face is a reminder to me of how special she is, and how much I can learn from her.

“I will give thanks to the LORD because of his righteousness and will sing praise to the name of the LORD Most High.” Psalm 7:17

When I first started this blog, I wrote up some pages (found on the right side) to give information about our (Renny’s) story and some of my thoughts on things. One of them was on my thoughts about God’s Will in regards to Ren and her disability. I have revised that page to say the following:

I once thought that there was no way that God purposely created Ren with her disability, nor that it was His will. I said that it was not God causing it, but that it was due to the fall of man, and our increasing distance between the creation of the perfect man and woman, because of sin and its effects on humankind. Sort of like, just by chance, by rotten chance, she happened to be this way. Though I still agree with the fall of man part, I am uncertain about the other parts. God knows everything. He creates everything. He makes no mistakes. John 9 gives a pretty clear example of God “making” someone have a disability “so that the works of God might be displayed in him.” I used to think that if I thought – or knew – that God caused Ren’s spina bifida, that it might make me angry with God. But, as I thought more about it, and about that Scripture, it almost makes me feel better instead. It makes me think, Hey, if God planned this, it must be with good reason, and for ultimate good, and so then….it must be good.

So for now I am not going to dwell on the specifics of the question of why SHE has to be the one who has to struggle in so many ways. Who am I to question God? What do I know? But, I am going to still say that, though the fact that she does have to struggle sucks, and it does, God will use her. He will use her for good, to show His glory and power and might. Just like he used the blind man to show his amazing power. And that should make me feel pretty good.

A wise friend of mine, during a conversation about this topic, said the following response below. Since I feel it sums up so very articulately my revised point of view as well, she has given me permission to share it here:

“So, I would and do, when I see things in my life that I did not bring on myself and haven’t the power to change, see each of those places as existing for the express purpose of being used to glorify God. If they could not be used to glorify God, then they would not have happened. And we know that there are things which God recognizes as being beyond our ability to bear up under (I Corinthians 10:13). I guess I see the question of whether He specifically permitted that circumstance for me or whether He merely knew that circumstance would arise and strengthened me to meet it to be of little difference or ultimate consequence. After all, even if He didn’t schedule me for those times/things, He Himself exhorts me to accept that such times as destined for me (I Thess 3).

So, I don’t think the things, biological or otherwise, that are out of my control are mere accident. They were destined, whatever the term is meant to imply. And, knowing such actually affirms my knowledge of God’s sovereignty over all. Whether appointed or allowed, He saw it. He removed what was beyond me, and He wants me to live without bitterness in the knowledge of His provision.”

Ren had another small seizure a couple of weeks ago. It was not the lengthy grand mal type that she has had too often that have sent her to the hospital. I never thought I would be thankful for a “normal” seizure. It was a short 2 minute one in which she came out of quickly and resumed normal activity immediately afterwards. The neurologist was contacted and her medication has been increased. Though I am thankful that it was not a severe seizure, I am still saddened, because the neurologist had said that if she was still seizure free by her August appointment, then they would look into slowly weaning her off the medication. (sigh)

Summer is here! The school has sent home a mobile stander for Ren to use at home. She loves it! It is like a wheelchair that she can stand in (see pic below) and roll all over the place in. She wheels from room to room, spins around in circles, and watches tv in it as well. The purpose of the mobile stander is to allow her to be mobile in an upright position, and it also strengthens her legs by having her stand for a period of time. A different local school district also has lent us a hand tricycle for her to use over the summer. She LOVES that as well. We went camping over the weekend and brought that with, and she was ecstatic to be “biking” like her brothers. She moves the tricycle solely with her arm strength. It also moves her strapped-in-legs on the pedals, but they are not doing any of the work, just going through the motions – which may also be good for her legs.

Ren’s speech is still very delayed. She is 4 years old and does not say even a 2-word sentence without prompts. However, her sound and word production is increasing and progressing well. She switched speech therapists at the end of the year, and she is awesome. She is helping Ren out during the summer as well (yay!). With prompting, Ren is using picture cards to say three (or more) word sentences, using mostly consonant vowel words, such as pie, pea, toe, knee, boo, no, bee,….and etc. She has started being able to say at least one vowel consonant word: eat, which is a big deal. This therapist has reassured me that Ren has the intelligence and the potential to progress so much more.

Other than the small seizure, Ren has been healthy, and we are so grateful. No fractures, no infections, no new problems. She is growing, and getting heavier to lift and carry! She is enjoying summer, as we all are. Below are some pictures. In a couple pictures you may notice that she has knee pads on. Because she cannot feel much of her legs and feet, she does not know when/if she is hurting herself, and so can brutalize her legs while she crawls around without even knowing — and she has done that. So, the long socks and the knee pads help protect her. Enjoy the pics! (You can click on each picture, then click a second time, to make it enlarged).

“Now faith is the assurance of things hoped for, the evidence of things not yet seen.” Hebrews 11:1

I see again that it has been almost 3 months since my last post. But, that’s good, because usually no news means good news. And, in this case, the updates are generally good news.

Ren had spina bifida clinic last week, and it was filled with lots of information. The orthopedic surgeon, physical therapist, and rehabilitative doctor were all happy with how Ren was walking. We had videotaped her walking using her walker (see video below) recently in her “floor reactive AFOs (ankle-feet-orthotics), in other words, her smaller braces, and they were commenting to each other as they watched the video about how she was doing such a nice job, without any leaning of arms or buckling of legs, and even able to take her hand off the walker. So, it was decided that she could start using her AFOs at school too – she had been only in her full length braces there, for precautionary purposes, as her legs strengthened back up after all of the fracture issues. A few minor concerns included her left knee does not straighten quite all of the way – something that we will watch, her legs are slightly different lengths – again something we will watch, and her muscles between her hips and thighs are a bit tight – something we can help by having her lie on her stomach and up on her elbows to stretch it out. The physical therapist found a hand cycle (called a whirl a wheel) that we might look into getting somehow…maybe with help from Children’s Miracle Network. Also, the school is ordering a mobile stander for her to use at school, and we would be able to borrow over the summer as well.

Also at the clinic we discussed her bowel movements with at least three different physicians. I know, exciting. But, there was concern that she does not have them easily – I have to “help” her often (won’t go into details). So, we are to give her a much bigger dose of Miralax and try glycerin suppositories as well. We have just started the Miralax, and already there is a difference. I apologize for writing about this stuff, but individuals with spina bifida often have bladder and bowel issues because of their weakened nervous system in that area. We are pretty sure she can’t even feel when she has to poop, or even when she does poop. On a similar topic, our visit with the urologist was fairly good. Her ultrasound of her bladder and kidneys looked good. He is setting up another urodynamics study to be done this summer at a larger hospital, to further check her urinary tract and bladder. We are still cathing her 3 times each day.

Ren is still greatly delayed in speech. We are trying out cranial sacral therapy at a chiropractic office, to see if any benefits can come from that, though we don’t notice anything yet after two sessions. It was worth a try. But, she is still very active and making progress. She know her colors, her numbers 1-10, her ABCs, she is working on her walking, her legs are getting stronger, she is still participating in adaptive swimming once a week, and has even done adaptive skiing twice this winter (also a video below). AND, she has had NO more seizures. And that is good news.

Here she is walking:

Here she is “skiing”:

I realized it had been 3 months since I last posted, about Ren’s seizure in September, so I thought I would update on a few happenings since then. Ren’s femur fracture finally appeared to be healed at an October x-ray check-up. Yay! The orthopedic surgeon still would like her to remain in her HKAFO’s until March, though.

In November, one Sunday morning around 11:00, I was going to give Ren a bath, and I had her on the bathroom floor waiting while the water was running. I looked down and noticed her kind of wavering a bit, almost as if she was having trouble staying sitting up. I asked her if she was okay, and she nodded, but she continued to make slight jerky movements. I starting panicking and remembered T said she hadn’t had her seizure medication that morning (he was at a church meeting). I rushed her into her bedroom and administered her meds, and a few moments later, the jerking stopped, and a few moments after that, she seemed back to herself. It all happened so fast, probably lasting 2 minutes tops. I was unsure what exactly happened – it seemed like a blur – and even though it shook me up at the time, I did not do anything about it because in hindsight it didn’t seem significant. But when thinking about it, I decided a week later that I should at least let her neurologist know about the incident. I wrote a message to them, and the following day they called and said they are considering it a seizure, and they increased her meds. I haven’t seen anything since that day.

Then, a few weeks ago we noticed her lower right leg was swollen. I feared another fracture, though her skin was not warm like previous fractures had been. She was taken in for an x-ray and it turned out to be a stress fracture, that was already healing up on its own. We did not need to do anything differently, and she has a follow up check the first week in January. I want to be able to discuss with the orthopedic surgeon options for her brace, because we feel that keeping her only in her HKAFOs will inhibit her from gaining necessary strength in her legs. So, we will see if anything comes from that then.

Ren’s speech is still extremely delayed, but she has said pretty clearly a few new words, such as cookie, open, and okay. She is doing a lot of verbalizing, though, some of which sounds like singing – and loud singing at that sometimes! Her school has finally found a speech therapist too, so that will (obviously) be helpful.

Oh, and the other day when I had her on the floor changing her diaper, she had her legs up in the air, and I put my hands under her knees, and had her legs drop down, and I told her to kick (up into the air). She has always been able to kick her left leg, but not her right. She kicked her left immediately, and I told her to kick her other leg. She tried to get away with pulling her leg up with her hands (like she usually has to do), but I held her hands and kept encouraging her to do it, and slowly but surely, she got her right leg up on its own. It might seem like such a small thing to be excited about, but I was.

So besides the few minor incidents, and her limited mobility in her full leg braces, Ren is doing great. She is still such a happy little girl, and a complete joy to be with. We are all truly blessed. We chose life because God chooses life, and Ren is just proof of why we should choose life. That life is given to us by our Heavenly Father. And we celebrate life as we reflect on the birth of our Savior, Jesus Christ. Merry Christmas, everyone!

When people hear that she had a seizure, I know from reactions, or lack thereof, that they think of just a normal seizure. But Ren’s seizures are not normal. Hers are potentially dangerous ones. A seizure over 5 minutes long is considered dangerous. All of Ren’s seizures have been at least 30 minutes each in length. And she had her fourth one three days ago.

T went in her room around 9:45 a.m. to check on her/wake her up, and found her in the midst of a full “grand mal” seizure, as they used to be or are sometimes still called. I had checked on her before I left for work, around 7:00, and she was sleeping, but beyond that we just don’t know when it started. When he found her in this state, he ran around looking for her Diastat, her emergency seizure medication (i.e. valium), and of course couldn’t find the current one right away. He called 911 during this search as well, and after some minutes found the right medication and administered it as the local first responders arrived and shortly afterward came the paramedics. The Diastat didn’t seem to slow it down, though it was not given much time, for the paramedics proceeded to administer another drug. They thought it was starting to slow down at this point (though T didn’t notice any change), but we learned later that they administered a second dose in the ambulance en route to the hospital. She had stopped seizing by the time she got to the hospital, but that still leaves the seizure as lasting at least 30 minutes that we know of, longer for sure, we just don’t know how much longer.

I was called at work, and T picked me up and we rode to the hospital together. Ren was no longer seizing, and asleep. After some blood draws, a urine test, and a CAT scan to test for various possible causes such as an infection, off gluocose levels, a problem with her shunt, and etc., they told us they were admitting her to the hospital. After a very, very, very long wait, with Ren sleeping the whole time, we left the hospital at 10:30 p.m. We had been there for about 11 hours. The doctor preferred to keep her overnight, but we had communicated that we preferred to not stay overnight, and he felt since we knew her best – she awoke off and on during this whole time, but by 10:00 she was staying awake and acting more like herself – and we had been through this before – that he would give us the okay to go.

During this hospital stay, we had a long conversation with the nurse practitioner who works closely with our neurologist. We asked many, many questions. We really do not know the real cause of the seizures, but she reminded us of the fact that her having a shunt is a real possibility, because it is a foreign object in her brain. She did not, though, seem to have any explanation as to why she has such long seizures. And, after discussing how these lengthy seizures are very uncommon, but they do happen, and that it is concerning, we asked point blank, can she die from these seizures. She carefully worded it this way: people can die from seizures if they cannot be stopped.

So….what’s next? Because Ren’s current anti-seizure medication is not working, and it is at its maximum dosage, they are going to slowly introduce a new anti-seizure medication. It is not better or worse, stronger or weaker, just different. We are to continue to give her her current medication, plus this new medication, small doses at a time, increasing it a bit each week, and when we get to the full dosage of this new medication, then we will at some point stop with the other so she will just have the one. Also, we used to have a camera in her room so we could see in her room, in her bed, on our tv in our living room. Then it broke. We are going to buy a new, better one.

So, though it is all a little frightening – I have a strange sense of calmness also. It could be that I am just numb. Or that I am getting over the flu, which I woke up with the morning after (thankfully we were not at the hospital for that!). But, I am hoping, no, believing, this is because I just have faith that the Lord will protect her, or that I just know He is in charge…of everything. I continue to pray, though, that He will put an end to these potentially dangerous seizures.

Ren is doing fine now. She seems herself, and we have not noticed any differences, yet. She is still her sweet, happy, joyful, lovable, wonderful self. But we worry how much of this her little body can take.

PLEASE, please, pray that this new medication will work. That she will not have to experience any more of these lengthy, dangerous seizures. She also goes in for an x-ray on her femur next week – please pray for healing of that as well. And, of course, prayers for total complete miraculous healing are always welcome.

NOTE: I want to note that with some of the bad reputation some emergency vehicles/systems get for not getting to emergencies in good time, that in every one of our calls, our town’s first responders have been there within like 30 seconds, literally, and the paramedics, within 5 minutes. We are so truly thankful for both of them, their quick response, their professionalism and skill, and care. They are all awesome.

I realized I had not updated the blog about Ren’s recent x-ray on her fractured femur. It is STILL not totally healed. It supposedly has made a little progress, but not complete yet. It has been 3 months. She is to be in her HKAFO’s for another 8 weeks. If it has not healed by then, they will do some type of bone stimulation to see if that works in speeding up the healing. Please pray that her bone heals before then.

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:

Ren had an appointment the other day – an x-ray to check on her fracture. It is not yet healed, though “making progress,” and she will need to stay in her brace another 4-6 weeks. We had actually gone to get a second opinion, or I guess a second perspective on this whole fracture cycle issue going on, and this doctor did not seem to object to the projected course of treatment for Ren. He seemed to agree with the transfer of her from her cast to the HKAFO full leg brace, with range of motion exercises for her knee, and did not necessarily disagree with the proposed administration of the bone strengthening IV medication doses after it is all healed up. He explained that the bone is taking a long time to heal because of both the type of fracture it is and the fact that it is near where a plate had been.

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.

Two days ago, Ren had another seizure. It was around 10:00 in the morning, and she was still in her bed (she is a late riser!), and T had her on the tv – we have a camera set up in her room – though the camera was only showing half of her bed at the time – and he did glance at it at one time and saw her arm moving around, at about 10:15, but he figured she was dancing, something she often does. However, around 10:30 he decided she needed to get up, so he went in there, and discovered her in the midst of a grand mal seizure. I was across the street at my parents’ house, tutoring a boy, and so I wasn’t there to help as he frantically searched around for her Diastat, a valium-type medicine to give if she has a seizure longer than 5 minutes. He called me, and by the time I got over there, around 10:40, he did find it. He handed it to me and I had to read the directions – thankfully the directions were right there with it – trying to stay calm, and administered it to her.

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….