Rayleigh's First Halloween

I know this is kind of jumping back a few months but I want to get Bug's 1st Halloween experience blogged before I go to her Thanksgiving and Christmas.

This year Halloween fell on a Sunday. In Oklahoma City, like many other cities, trick-or-treating was done the night before.

Michael is a Halloween fanatic so our front yard is always decked out for all to see. Rayleigh had a fun time sitting outside with me watching Daddy put out all of his decorations the first week of October.

I made Rayleigh's Halloween costume this year. She was a ladybug naturally! She wore a black long sleeved onesie with black tights and shoes and then the big fluffy tutu and wings that I made her.

On Saturday we thought it would be fun to take Rayleigh to PicturePeople and get her pictures done in her Halloween costume. Well, she was hungry when we got there so while we waited for our turn I went ahead and fed her, but then she was tired. We got 2 pictures out of her before we even got her costume on her and realized it just wasn't going to happen so we rescheduled for the next day, Halloween.

So we went on home and took a nap. When she woke up it was time to get her in costume and pass out candy. We had quite the crowd this year thanks to Michael's scary graveyard out front. Everyone that came to the door gushed about how cute our little ladybug was!

On Halloween day we got up pretty early and got Bug in costume and went straight to see her Gamme. We spent some time there visiting and getting some pictures in her costume before heading to PicturePeople for her appointment. This time was so much better and we got several cute pictures!

Michael had to work Halloween night so Lovie & I took Rayleigh up to the hospital to visit her Aunt Savvy who is a nurse in the ER there. Her Aunt Savvy showed her off and bragged about how cute she is!

After that I went with some good friends to Haunt the Zoo with Rayleigh Bug! She had such a good time seeing all the people and lit up Halloween decorations! One of the zoo volunteers told us that Rayleigh was the cutest ladybug of the night by far!!! And that means a lot to us because there were a ton of ladybugs there!

Rayleigh had a wonderful and busy First Halloween. Maybe she'll grow up and be a Halloween fanatic like her daddy!

Weekly Physical Therapist

Because Rayleigh qualifies for SoonerStart in her motor skills we opted to have one of their physical therapists come and work with Rayleigh once a week until she is 3 years old or until she catches up.

We got paired with Stephanie from Oklahoma County SoonerStart. She is awesome. I get along with her really well but, more importantly, she is great with Rayleigh and very patient. We set a goal of having Rayleigh crawl by November 2011 and pay more attention to toys presented to her.

Our current exercise that we work on is getting Rayleigh to sit alone. Rayleigh will sit completely unassisted for about 5-25 seconds but then once she realizes what she's doing, she arches her back to get out of the sitting position. This is something that we've had a hard time getting Rayleigh to stop. Anytime we do her sitting activities she will fuss and arch her back to try and stop us.

We've been working with Stephanie for almost 6 weeks now. She has shown us so many new ways to work with Rayleigh on sitting by herself that we never would have thought of. Along with sitting, we are working to get Rayleigh Bug to use her hands and arms to prop herself up. This helps her learn to sit on her own and is great for doing tummy time also. One thing that little Bug enjoys as far as propping goes is to get one of the couch cushions down on the ground and have Bug kneel over it. Knees on the ground, belly on the side of the cushion and chest/arms on the top. Then we just put a musical or light-up toy in front of her and she props herself right up to check it out.

We definitely see the potential in Rayleigh but we were really hoping she'd be sitting by Christmas. Who knows, there's still 2 days, maybe she'll pick it up as a Christmas present to everyone including herself!

SoonerStart Evaluation

When Rayleigh Bug was about 5 months old Michael and I noticed that she was hitting her milestones, but that she was hitting them at a slower pace than expected. Our main concern being her complete lack of reaching.

We are members of the OPAT program (Oklahoma Parents as Teachers) and our parent educator, Marilyn, suggested we have SoonerStart come out and do a development assessment on Bug to see if she qualifies to have them come on a regular basis to work with her and get her better caught up.

SoonerStart has a free developmental intervention program designed to work on children's delayed areas. To qualify, the child must be younger than 3 and needs to be behind 25% in 2 different fields or 50% in 1 field.

We had Marilyn set up the first meeting with SoonerStart and Bill came as our representative from SoonerStart to do all of our paperwork and ask all the usual questions. He asked things like, "Was she premature?" No. "Where do you feel she's lacking?" Motor skills, not reaching at all and not really interested in toys. "What health conditions, if any, does Rayleigh have?" Epilepsy, nothing else. And so on.

A week later, a couple of women from SoonerStart came to do the developmental assessment to figure out how behind Bug was and if she would qualify for the free program to get her back on track. This visit was also a lot of questions but they also examined and played with Rayleigh. They checked her tracking, her interest, her head/neck/torso strength and her milestones up to date. They asked about her language so far, her eating and sleeping habits, what she enjoys looking at most, how she lets you know what she wants and what we feel she needs work on.

Rayleigh was considered appropriate for her age in all areas except motor skills. Just as we suspected.

She had just turned 7 months old the day they did the evaluation. The evaluation concluded that Rayleigh was 2-4 months behind overall in motor skills. Major things lacking at the time being her gross motor: sitting, crawling position, & raising head during tummy time.

They said that these delays could be from anything. Her Phenobarbital medicine, the seizures, an underlying thing with her epilepsy, or something different all together.

The women said the test showed that she is delayed enough in this area to qualify for a physical therapist to come weekly or however often we choose to work with Rayleigh on her motor skills. They said that Bill would call us that week to get the first meeting with the physical therapist scheduled.

I'd be lying if I said that Michael & I were not disappointed when they left. As parents, we want the best for our baby girl and want her to be as normal (whatever normal is) as possible. We are now devoted to getting her motor skills caught up, by doing whatever it takes!

Clobazam

Friday, November 12, we woke up at home after a much-needed restful night's sleep. But the work was not over. Michael and I had forms to fill out and fax and people to call in order to get Rayleigh's Clobazam prescription filled out.

Clobazam is an anti-convulsant, seizure control medicine that is not approved in the USA. Because it is not approved here yet we are using Mark's Marine Pharmacy in Canada to receive the medicine. We have to pay every bit out of pocket because insurance doesn't cover any prescriptions for non-FDA approved medicines.

We had to get a written prescription from Dr. Hernandez (epileptologist at Cook's) along with a letter explaining why she needs the medicine signed by Dr. Hernandez. Both of these need to be faxed to Mark's Marine Pharmacy along with a form filled out by us and a letter signed by us stating that Dr. Hernandez has prescribed Clobazam as seizure control for Rayleigh.

After we fax all the information we have to call them and give them payment information. We chose to only order 1 month's supply this time. You can order up to 3 at a time to save on shipping costs. But, with us not knowing if it will work we decided to do one month first so if it doesn't work out we didn't waste extra money.

Each month's supply of Clobazam is $18.99 and shipping is $15.70 for 1-3 boxes/months supply. Money well spent if it controls the seizures.

Clobazam is a pill tablet that is intended to be swallowed whole for adults. For infants and small children you must crush the pill. It can be taken with or without food or water. 

Dr. Hernandez prescribed a weaning process onto the pill for higher tolerance. Her full dose prescription is 1 pill a day, given 1/2 pill twice a day. She is still to take 12ml Phenobarbital at night. The weaning for Clobazam goes as the following:

Week 1: 1/4 tablet at bedtime
Week 2: 1/2 tablet at bedtime
Week 2: 1/4 tablet in morning, 1/2 tablet at bedtime
Week 4+: 1/2 tablet in morning, 1/2 tablet at bedtime

We had to try several different methods of giving Bug her Clobazam before we figured out the best way she liked. This pill taste like the driest, most bitter aspirin ever :(

First, with just a 1/4 of the tablet we would crush it and put it on a spoonful of applesauce or rice cereal. That worked for the first 3 days then she starting catching on and spitting it out.

Next we tried to crush it super fine and mix it with Pedialyte. She took this fine the first night we tried but then spit it out completely the next night. We also tried formula one night but she wasn't having any of that either.

Once we were on the 1/2 tablet dose I tried to just crush it up and rub it dry onto her tongue and let her drink formula to wash it down. This kind of worked, she hated the process but at least she was getting all of it down this way.

Lastly, as suggested by Michael's grandmother, we crushed up the 1/2 tablet of Clobazam and mixed in a little bit of sugar and just rubbed it dry onto her tongue (or let her suck it off my finger if she liked the sugary taste) and then wash it down with a little squirt or 2 of Pedialyte or sugared water. She continues to take it this way now and seems to enjoy it best.

The good news with this Clobazam is that she has gone from 1-2 seizures each day to 1 seizure every 3-4 days! We have already ordered 2 more months worth. We really hope that this is the solution and that it's not just another "honeymoon phase" like when Phenobarb gave us 16 days seizure-free in a row.

We have to give the Clobazam another week before we see full results. Let's hope the seizures continue to dwindle away!

Cook Childrens: Day 4

Our last day at Cook Children's Hospital in Ft. Worth, TX, started off on a good note. Our nurses, Shalyn & Katie let us know that she would be getting the EEG leads off her head in just a couple of hours and that we would be discharged that day as soon as Rayleigh woke up and took fluids after the MRI and lumbar puncture.

Dr. Hernandez, her epileptologist there, came in around 9am to discuss the day and the plan for returning home. Dr. Hernandez let us know that he would be observing the MRI results and he would do the LP as soon as the MRI is done so that she will still be asleep from the anesthesia.

Dr. Hernandez said that there is still a chance that she will outgrow the seizures based on the fact that they started so early in her infancy and because every test has come back normal.

Bug was prescribed Clobazam by Dr. Hernandez for seizure control. This medicine is not FDA approved (rumor is that the company doesn't want to pay the USA fees to get it approved) so insurance won't cover any of it. It's not too bad, about $20 a month plus shipping and handling. We can order 3 months at a time to save on S&H.

Shortly after he left Maria, an EEG tech, came in and took the EEG leads off Rayleigh's head and then Michael and I took her in the bathroom and washed her hair because it was all ucky from the oil used to get the glue off.

She was so happy to have her head free!

Then we just enjoyed a little bit of time together before they came in to take us all downstairs to start the anesthesia for the MRI and LP. We went into this small wing of the hospital that was similar to the back of a doctor's clinic with a nurses station and small rooms off a hallway.

We went into one of the small rooms and laid Bug on the bed and they brought her a warm blanket to help her sleep. They asked the usual questions, had us sign a few papers and then Rayleigh and I went into a different small room while Michael had to go wait in the main waiting room of that wing.

They laid Rayleigh on a new bed and had me hold her arm down while they started a new IV (previous one moved or closed up) and then they put a small breathing mask on her face and had me sing to her while she drifted off mid-cry. The room smelled of bananas and tears starting flowing down my eyes. Those are the things I remember most of that event. Brave little Rayleigh doing so many things that most kids never have to go through in their lifetime at 7 months old.

Michael and I were sent back up to our rooms and were told that it would be a few hours before we would see Bug again because after her MRI and LP they keep the babies in a recovery room.

A nurse came in and said that they were bringing Rayleigh up right then and Michael and I sprang to our feet and waited anxiously to see our baby girl. The nurse from anesthesia said Rayleigh did wonderful and told us that she'd probably start waking up in about an hour but that she needed to lay flat on her back for at least another 2 hours because of the LP.

Rayleigh rooted around a little bit an hour or so later but was still drowsy and pretty much asleep. She really needed the rest though, the previous days were hard on her.

When she finally woke up for good she took 2 ounces of Pedialyte and they brought in the discharge papers and then she drank 2 ounces of milk and we loaded the car and said goodbye to all the friends we made at Cook Children's Hospital.

Cook Childrens: Day 3

Rayleigh enjoyed her 3rd day at Cook Children's Hospital in Fort Worth, TX the most out of her 4 days there.

She was starting to feel more comfortable being there and also getting used to the wires from the EEG leads and "no-no" leg brace that covered her IV.

Although still not sleeping well, she was in a much better mood throughout the entire day. We played on the floor on the gym playmat several times and we got a lot of smiles out of her that day!

Resting her playmat with Daddy while he calls the grandparents to fill them in.

Mike, the paramedic, brought in some jarred baby food for Rayleigh to eat. He brought carrots, applesauce, and beef stew. Our Bug hadn't ever tasted anything beef so we thought we'd give that a try first. Oh boy! First, as soon as we opened the tiny jar of beef stew the entire room instantly smelled like wet cat food. It was awful. We thought, "Well, the green beans don't smell good either but they taste alright so maybe this won't be so bad." We got a tiny bit on the spoon and gave it to Bug. Her face squished up and the food came right back out. We scooped it back and gave it another go. Same reaction. So Bug and I talk Michael into trying a small bite himself. He almost gagged! So without hesitation we closed that jar back up and threw it away!

We gave Bug some applesauce and then a little formula and she was soon falling asleep for what we assumed was a long and much needed nap since she was feeling more comfortable. Well, that probably would have been the case had she not woken up with a seizure about 25 minutes into her nap. The seizure was the same as the ones the day and night before and so was the routine. Press button, make room for nurses, Dale (her nurse) announces her seizure activity to EEG techs on camera/microphone and attends to Rayleigh for a little bit after the seizure ends to make sure she's doing ok.

Dr. Hernandez, the leading epileptologist there, came in after things had settled back down. He was so wonderful with his bedside manner and knowledge of infants with epilepsy. He told us that Rayleigh's brain activity remains completely normal when not in the seizure and then it spikes during the seizure, calms back down with mild spikes for her myoclonic jerks coming out of the seizure and then the brain waves return right back to normal. He told us that he would like to do the lumbar puncture to check her spinal fluid because it's the best way to get an accurate reading of the fluids that move through her brain. He saw our unsure faces and told us that he would do the LP himself and that he does them several times a day! This reassured us and we decided to go ahead and have the LP done the next day right after her MRI when she was still under anesthesia.

Dr. Hernandez told us that she is back to having tonic-clonic seizures and that the Keppra she was on during her previous EEG was probably suppressing the clonic phase of the seizure and that is why the EEG read that seizure as tonic seizure without the jerking movements. Dr. Hernandez explained that the seizure activity is starting somewhere deeper in the brain and then spreading to both sides of her front hemispheres. He said that the MRI they do has much smaller slices, referred to it as an HD MRI, and could find something deeper within her brain that the previous MRI missed.

Dr. Hernandez told us he would be back the next morning to discuss more with us before she went downstairs for her MRI and LP.

About 20 minutes later a lady from labs came in to draw blood to run tests for Dr. Bassinger, the metabolic geneticist. She did great and got all she needed with one prick and Rayleigh did fine!

At Cook Children's Hospital they have a parent's lounge that includes a coffee maker, ice & water machine, a refrigerator, a microwave and a small table and chairs. This room was right next to our room so I visited the coffee machine OFTEN to keep the energy up that I wasn't getting from sleep. Cook's also has a giant playroom on the Epilepsy Monitoring Unit (EMU) floor. It has several little tables and chairs, lots of games and toys and paints and books and everything a kid can think of to play with!

Patients can visit this room as often as they want, even when they are hooked up to the EEG leads because the playroom has cameras that the EEG techs can watch the patient on and the room also has plug-ins for the battery pack that the EEG leads are hooked up to. The battery pack is for about 1 hour unplugged. This allows the patient to unplug from the room and walk around the hospital.

With that in mind, they also have red wagons you can borrow to stroll the baby around. We can take her anywhere in the hospital as long as we are plugged back in in an hour!

This was Rayleigh Bug's first wagon stroll and she LOVED it! We ended up taking her in the wagon 4 times during our stay. Her favorite trip was one night we went to the main entrance area of the hospital that has a super tall ceiling with a old town theme and mirrors and lights and lots of colors.

Day 3 was definitely our favorite day in Cook's with Rayleigh! She was less stressed out so, in turn, we were as well!

Cook Childrens: Day 2

Our second day in Cook Children's Hospital, Ft. Worth, TX, was much better than the first. That being said, we were mentally and physically exhausted from the day and night before. Rayleigh slept for a couple of hours and then woke up with a seizure. This startled her very much and kept her from going back to sleep. So Michael and I kind of took turns that night staying up and rocking her in the chair or getting up to soothe her if she would fall asleep in the crib.

At Cooks they suggest you be up and dressed and ready by at least 8am for the doctors, nurse staff and any specialist that may need to see you. We had our nurses, Shalyn & Katie, checking on Bug at least once every hour through the night and into the morning. At 7a we met the new nurse for the day, Dale, and at his 8 o'clock check he briefly went over the day with us. Mike was our paramedic again that day and he came in while Dale was with us to get Bug's vitals. Dale let us know that we would see Dr. Perry again that day to go over the EEG from the first day. Bug would also have some blood drawn later in the day for some tests that Dr. Coleman ordered with Dr. Bassinger (metabolic geneticist).

Dale said that most of the day will be just us hanging out. And that's exactly what it was! Bug was feeling more comfortable on her second day there but still wasn't napping for us. Cook Children's was so wonderful and provided everything we needed. Bottles, diapers, wipes, shampoos, highchair and even a gym playmat so Bug could get on the floor and play with her toys!

They also provide a DVD player and a Wii in each room so Michael was occupied with that for a little while which kept him from going too stir crazy!

Dale came in around 11a and brought in lidacaine to apply to Bug's inner-elbows to numb it a little bit for the needle to take blood. This was AWESOME! Rayleigh Bug didn't even feel the prick when the lab lady came in about 30 minutes later to draw the blood!

Our Bug started getting fussy around noon and we could tell she was just so tired it was starting to hurt so we rocked her in the recliner and she dozed off after some time. Then about 20 minutes into the nap she had a seizure.

We pressed the button on her EEG pack and Dale came in and announced her seizure behavior while the EEG techs had the camera on her and microphone listening. The seizure lasted almost 2 minutes. It was very hard to watch. They all are.

After it was over you could see on her face how confused and tired she was :( and there was nothing we could do to help get her back to sleep. She just wasn't having it.

The day continued this way, Rayleigh tired but not wanting to sleep. So we would rock her for a little bit so she could get some rest or a 5-10 minute nap and then we would entertain her by playing or sitting in the highchair to eat.

During all this chaos, Dr. Perry came in for about 2 minutes. He said that based on the previous day's EEG he confirms the episode as seizures. (we already knew that, but moving on) he said that he wants to take a closer look at the EEG to see where the seizure activity is starting and spreading from. And that was about it. He was very busy.

Around 6 o'clock that night Michael ordered some pizza to be delivered to our room. Rayleigh also started drifting off so we thought it would be perfect for her to get some sleep while we get some food!

Didn't work out that way. Unfortunately, the pizza guy knocking on our door to deliver the pizza startled Rayleigh awake and she then had a seizure about 25 seconds after waking up. I press the button, Michael goes out in the hall with the pizza guy to get out of the nurse's way and they do the announcing of activity, check on her for a little while after she comes to and leave the room.

At least after this one she wasn't so shaken up. She hadn't been asleep very long and the seizure, although the same length as the earlier one, wasn't very severe on her muscles. She didn't go back to sleep but she wasn't upset or unsettled so she sat on my lap while I ate some pizza. Although starving from not eating that day, we didn't have much of an appetite from what happened.

After dinner there was a nurse change and we got Shalyn & Katie back. We were very happy to see some familiar faces again and even Bug seemed to enjoy their company. More like friends than doctors to her!

Later in the evening, around 8:30 they brought in her medicine. She's down to half a dose of Phenobarbital the entire trip so they can catch more seizure activity than if she was on the full dose. Nurses have to administer the medicine so I hold Rayleigh in the cradle position like we do at home while Shayln squirts the Phenobarb into her mouth little by little. She eventually takes it all, but not without putting up a good fight!

We can't get her to sleep that night. She seemed most comfortable cuddling with one of us at a time on the couch/bed but we know we aren't allowed to co-sleep on it. When Shalynh one of us at a time on the couch/bed but we know we aren't allowed to co-sleep on it. When Shalyn & Katie came in for the 10 o'clock check on Bug and noticed that she was still awake I asked them if we could get the consent form to sign and get the adult bed in the room instead of the cage-crib so I could sleep with her in the bed.

Shalyn came back and said, "I am so so sorry but the patient has to be at least 1 year old to co-sleep."

This was a pretty big bummer because Michael and I knew that we would all get the best sleep if we could just co-sleep. We snuck in one hour of her and I sleeping on the couch/bed together and then moved her to the cage-crib. She continued to sleep for 2 hours but then woke up with another seizure. Pressed button. Nurses came in and announced activity and stayed with her for a bit after. They left. Rayleigh stayed awake. So did Michael and I. She fell back asleep around 3:30a but woke up about every hour whimpering so we would get up and soothe her back to sleep with singing and her pacifier. It was a hard night, but we made it through!

Cook Childrens: Day 1

Monday morning we get to Cook's Children's Hospital at 7:45a. Go straight to registration, then immediately taken to the EMU (Epilepsy Monitoring Unit) of the hospital. It's the 4th floor of the neurology wing.

We get in our room, about the size of a smaller guest bedroom with a small table, 2 chairs, 1 recliner, 1 crib (cage) and a sofa. There is a bathroom that is almost as big as the room itself. A TV mounted on the wall, a built in closet and a space near the door for the nurses.

Let me just say that the first day is very overwhelming for the baby and the parents.

First the nurse comes in, introduces herself and gives a quick run by of the day and week's events to come. Then about 15 minutes later the nurse practitioner, ours was Jericho, comes in and asks a lot of questions that we've probably answered 20 different times now so why not 21 times? Like, was she full term? Yes. When did the seizures start? About 2 weeks old. Diagnosed at 6 weeks. What type of seizures? Usually tonic-clonic, Keppra makes them just tonic seizures though. What medicines has she tried? and so on...

Rayleigh starts drifting off to sleep after Jericho leaves. I buzz the nurse in and let her know that Rayleigh is falling asleep and will most likely have her seizure (normally one a day, at naptime) and ask her what we should do since Rayleigh doesn't the EEG hooked on yet. She said to go ahead and let her sleep and just take the chance because she's sure that Rayleigh will have a seizure sometime during the 3-day EEG. Sure enough she has a seizure. Michael pages the nurse to let her know and she makes note of it.

She then brings in these various sheets. One of which we have to check the times for when she eats, what she ate, and how much and then check the time for each diaper change. They weigh the diapers to see the difference of how much goes in vs. how much comes out. Another sheet was for us to describe each seizure as we see it so they can compare to what the EEG and video shows.

Next Maria comes in to put on the EEG leads. Maria is the Video EEG technician along with another technician that stays in the control room watching the videos, they do up to 6 at a time. Rayleigh has had 2 EEGs before but this one is totally different since she has to have the leads on for 3 days instead of 30 minutes. They use the conducting cream, the lead and then a small piece of gauze drenched in a watery type of super glue and use a cold air blowing tool to apply it. It is very cold and very uncomfortable. Maria gets 5 of the 25 leads on while Rayleigh is still asleep but then she wakes up screaming and so mad that I'm almost in tears holding her down and letting them do this. But knowing that this will give them answers keeps me pushing through and staying strong for my little Bug.  

Not long after Maria leaves Rayleigh starts falling back asleep... then the nurse comes back in with the paramedic, Mike. Mike checks her vitals and then starts the IV. This is standard for the EMU of CCH. They do an IV so if a child has a seizure longer than 2-5 minutes (depending on the child) they will use a rescue anticonvulsant to stop the seizure. Inserting the IV woke Rayleigh again. Screaming, sad, tired. Every time she falls asleep she gets a rude awakening. This kept up for most of the day.

We met one of the epileptologists for about 1 minute. He was pretty much just letting us know that first we need to confirm that she is actually having seizures before we go into the details of anything else. He also let us know that he wouldn't be our epileptologist but he was the only one there that day.

Dr. Coleman warned us that we wouldn't get much face time with the epileptologists while we were there and he was spot on.

Rayleigh was so out of her element that night. They took her Phenobarbital level down from 12ml a night to 6ml so that they would have a better chance at catching seizure activity. After the medicine we fed her and she normally drifts right off after eating. Well, not here. She would scream anytime we lay her in the crib cage thing. She was only comforted by one of us rocking her or laying on the couch/bed with me.

We co-sleep at home for nighttime so I thought maybe I could just lay with her until she falls asleep and then move her into the crib but she just wouldn't sleep. You could tell on her face that she knew this wasn't home.

Around 11:30p after several minutes of rocking with Daddy we finally got her fed again and off to sleep and in her crib.

Well, then at 2:30a she woke with a seizure. This is definitely a change due to the medicine because she never wakes up in the middle of the night with one anymore. There is a red button to push on the VEEG pack when she starts a seizure so we press that and then the microphone is on in the room and the nurses come in and start describing loudly what she is doing, "arms tensed and pulled into body" "hands clutched" "legs tensed" "face reddened" "labored breathing" "coming out of it" "myoclonic twitching" "shes done."

Then Rayleigh begins crying, waking up in a strange place with several people in her face. I pick her up and quietly soothe her on the couch on the other side of the room to let her know that Mommy and Daddy are still here and that everything is OK.

It took a long time for her to go back to sleep but she eventually did so we put her back in the crib and tried to get a couple more hours of sleep on the couch bed before day 2 started.



Rayleigh with gauze wrapped around the EEG leads so she doesn't pick at them and a "no-no" boot cover over the IV.



Ft. Worth

Michael and I always talked about Rayleigh's first trip out of state. We figured it would either be a quick weekend down to Texas for some fun at the beach or amusement parks or to visit my family in Florida. We never thought her first trip would be to a children's hospital.

We knew we had to be at Cook's Childrens Hospital in Ft. Worth, TX by 7:30a to "check-in". Ft. Worth is about 3 1/2 hours from our home. We could have made the drive but we would have been exhausted and stressed out. Thankfully, Michael's parents got us a hotel room in the Hampton Inn just outside of downtown Ft. Worth (where the hospital is located).

This was Bug's first hotel stay. We were so excited to experience another first with her! And it was going to be so great to have a nice relaxing evening in the hotel before the hospital stay.

We made 1 stop for gas and some fast food shortly after getting out of the city and then we had to stop on the side of the highway twice to change diapers.

We arrived to Ft. Worth around 4 in the afternoon and checked in to Hampton Inn.

That reminds me of how much our lives have changed since Rayleigh Bug arrived! First its the diaper changing in the car, something I never thought I'd be doing! And then there's the packing. Michael and I can pack for 5 days in 2 suitcases, including all clothes, books, laptop, everything. The trunk of our SUV was literally full, also had the diaper bag and a bag of snacks in the backseat!! Babies come with sooo much!!

In our hotel room you could tell that Bug knew we weren't at home but she didn't seem uncomfortable. I broke out her Bumbo chair and tray and some of her jarred food to feed her in the room. She's not used to eating this way but she did pretty darn well!

After she ate I went to the gym, literally right next to our room! Michael and Bug played the whole time I was gone and she didn't cry once! She sure does love her daddy-time!

When I came back we figured her tummy was settled from eating so we put on our swimsuits and headed to the indoor swimming pool for some relaxing fun time before settling in for the night.

Back in the room we each showered (I held Bug in the stand up shower while she cried during her whole bathtime!!), gave Bug her medicine and then we snuggled up in the king size pillowtop bed, Bug took a bottle and fell asleep so fast we thought she liked that place better than home!

Michael and I had a quick dinner, watched some tv and followed Bug's lead to sleep.

Woke up at 6am, got ready, loaded the car, all went to the lobby for breakfast and checked-out of the Hampton Inn to go check-in to Cook's Childrens Hospital.

A Referral

We keep Dr. Coleman, her pediatric neurologist, updated on Rayleigh's seizures via e-mail and phone calls in between visits. So we called him while she was taking the Phenobarb+Keppra to let him know that her seizures and frequency hadn't changed. After 2 weeks of trying this combination he called to check in and we decided then to take her off the Keppra.

Dr. Coleman put in a prescription for Rayleigh to start taking Clenazepam. Clenazepam is a wafer tablet that dissolves in her mouth. It is used as an anticonvulsant, also can be used as a muscle relaxer. We have been giving her one tablet a day (at nighttime to reduce fatigue during the day) and she has been taking it very well. No side effects to report. We started the night we talked to Dr. Coleman, so Bug has been taking it for a week and a half now.

Dr. Coleman let us know that he received the results of the chromosomal analysis and the DNA test that we had blood drawn for last month. Both came back normal in regards to anything epileptic or neurological. There was a slight abnormality though. Bug has a gain, or extra material, on the P32.2 band of her DNA. This can lead to different cholesterol issues, but she shows no signs of that now and it's unlikely that this will ever turn into a problem based on its current state.

The biggest piece of information Dr. Coleman told me was that he put in a referral for Bug to go down to Ft. Worth, TX and be examined at the Cook Children's Hospital.

Cook Children's Hospital has a special, top ranked pediatric epilepsy center. One of the best in the country, if not the best!! While there, she will be seen by Dr. Saleem Malik. His page on the Cook Children's Hospital website is impressive. We look forward to meeting him and getting a second opinion from an epileptologist.

Rayleigh Bug will have a 3-day EEG done when we first arrive to Cook. The last day, day 4, she will have another MRI. They may not need to do this after they view the MRI she had done 3 months ago. The chances they will want to do their own is about 50/50. Their MRI machine is more powerful and will see more clearly and thoroughly into the brain. Her brain has matured since her last MRI so we think they'll probably want to do their own test. Other than that, she will have more blood tests done to check metabolic levels for Coleman and a few blood tests of their own. We will also talk with a nutritionist/dietitian and a metabolic geneticist.

As I'm sure you can imagine we are anxious, excited, nervous and ready to get this done. Hopefully we can get some answers out of this trip.

Keppra's Second Chance

The first medicine Rayleigh tried as an anti-convulsant to control her seizures was Keppra. This was when she was 6 weeks old. Keppra took her number of seizures down from 4-6 a day to 2-3 a day but never decreased the number from there, even with dose increases. After a few weeks on Keppra we added Zonegran. Zonegran is a capsule form medicine generally used to treat partial seizures in combination with other medications. Adding Zonegran didn't change anything so we stopped giving it to Rayleigh after 10 days and proceeded to Phenobarbital. While she was taking Phenobarb we weaned her off Keppra so she was taking just Phenobarb. She went seizure free for about 16 days and then had a breakthrough almost 2 months ago.

We have since been trying increased doses of Phenobarb, taking Phenobarb twice a day rather than just at night and then added Keppra twice a day. Adding the Keppra made no difference in her seizures. She continued to have 2 daily. Once at naptime and once at bedtime.

We were told by Dr. Coleman, her pediatric neurologist, to give the Keppra+Phenobarb combination 2 weeks to see results. During these weeks we noticed Rayleigh eating less and not taking her solid food well at all. At first, we attributed this to a cold she had been getting over but once the cold was out of her system and this eating issue continued we realized it was more likely a side effect of the Keppra.

The 2 weeks came and went and she was still having 2 seizures a day. No improvement with the Keppra+Phenobarb combination.

Second EEG

Rayleigh had her second EEG Tuesday, October 12, 2010. She is 6 months old. The goal was to see if the brain activity has changed when not seizing and if she does seize during the test, where it is coming from.

Rayleigh finishing her EEG

We go to a small, cool, dim room with a bed and one chair. I lay on the bed with Rayleigh while Michael sits in the chair next to us. We quickly soothe Rayleigh to sleep and the EEG technician comes in and begins sticking the receptors to Rayleigh's head. She has a note that she needs to do it quickly because the patient (Rayleigh) seizes within the first 20 minutes of sleep.

We were conflicted. We absolutely do not ever want Rayleigh to have a seizure. But if she was going to that day, during the test would be the time to do it so Dr. Coleman could get a better idea of what is going on.

She had a seizure during the test.

Rayleigh slept for the first part of the test, woke up about 10 minutes into the test and had a 37 second seizure. Stayed awake for a little bit after and then went back to sleep. Once she was back asleep the technician came back in and did the strobe light section of the EEG. Rayleigh did not react to the strobe light at all.

The technician said that the test went very well, got all the information they needed from her asleep, seizure and awake sections. After the EEG we went over to Dr. Coleman's office so he could go over the results with us.

Dr. Coleman said that she is not having focal seizures. Focal seizures is when the brain activity is abnormal on one side of the brain. He thought maybe that is why she used to always turn her head and eyes to the right when she had a seizure, something she no longer does on medicine. He said that the seizure activity happened on both sides in the frontal lobes of her brain.

She is now having Tonic seizures as he explained. Before getting on anti-convulsant medicines she was having tonic-clonic generalized seizures. The Tonic part of a seizure is the initial muscle lock up and tense. Clonic is the twitching or jerking of the tensed muscles.

Dr. Coleman told us that tonic seizures are generally harder to control with anti-convulsant medicine. Tonic seizures can still be grown out of but it is not as likely as the tonic-clonic seizure. Dr. Coleman said that the harder the seizures are to control, the less likely they will grow out of them. This was a huge hit to Michael and I.

New course of action is to try a combination of medicines. Her Phenobarbital + Keppra. Yes, we are going back to Keppra to see if maybe it will work when combined with the current prescription. She is taking Keppra twice a day, 1.4ml each time and then 14ml of Phenobarbital at night. If this combination works we will slowly start weaning the Phenobarbital back so that she is at a lower dose of it along with the Keppra. Keppra is much more concentrated than Phenobarb so you don't take as much of it.

We are supposed to give this combination a couple weeks to see results. So far, it worked well for the first couple days. She went from 2 seizures a day to 1 a day. Yesterday she had 2 seizures though. Today, she has taken 2 naps and has not yet had a seizure with either one. This is a good sign, but can't get too hopeful yet.

If we don't start seeing results in a couple weeks we will either see a metabolic specialist to try and find an underlying cause that can be treated OR we'll see a nutritionist about the Ketogenic Diet.

Right now, worse case scenario is that she continues to have a couple seizures a day, with the medicine controlling all but those couple, for the rest of her life. But we can't think about that now, we still have a lot of options to go through before we get to worse-case scenarios.

And So It Continues

Three weeks ago Rayleigh had a major breakthrough from her Phenobarbital medicine and began having seizures again. They started gradually, 1 seizure every 2 days or so and then got to where we are now at 2 a day.

The seizure will generally happen about 15-20 minutes into sleep. She usually has one for naptime and one at bedtime. Today was weird, she had one when waking up in the morning at 7:30a. She did not have one during naptime today but then had one when she went to bed at 9:30p.

A couple weeks ago on Saturday, Oct 2, we did as Dr. Coleman prescribed and started giving Rayleigh 12ml of Phenobarbital a day. We were to do 6ml morning and night. Each time you change the dose of Phenobarb you have to give it 5-7 days to take effect because it has a long half-life. After 5 days there was absolutely no change. We expected to at least see them slow down if not go away on this dose.

We called Dr. Coleman and spoke with him on the phone for quite a little while. He is ordering a new EEG to see if her brain activity has changed. If so, this will give him more information on the direction we should go in. The EEG is tomorrow.

Also, he had us up her dose to 14ml (7ml twice a day). This seems like a lot to us. We took Rayleigh to get her blood drawn today so Dr. Coleman can check the Phenobarb levels to make sure they are still within the normal 20-40 range.

Dr. Coleman had a couple of points of information that were a bit unsettling:

1.) The harder the seizures are to control, the more likely we are dealing with a longer prognosis of her having seizures.

2.) He has had patients where the best you can do with medicine will still have them having a few seizures a day. It sometimes comes to the point where the parents have to make the decision to either give her a higher dose of medicine than normal range and risk developmental side effects OR keep the dose normal and prevent most of the seizures but not all.

We had to stop by Dr. Coleman's office today to pick up the paper order for her bloodwork to take to the lab. While in there, Dr. Coleman talked to Michael quickly and said that even though she's still having a couple seizures a day and today is day 5 on this new dose he doesn't want to make any changes on her medicine until after the EEG and then he asked us to come to his office right after her EEG because he will immediately have the results and he'd like to go ahead and squeeze us in so we can go over them as quickly as possible.

We know that she's not conscious when she's seizing. For her it's like sleeping and waking up feeling weird, but it is so upsetting to watch this happen to your child and know that there isn't anything more you can do for them. Sometimes we think it scares her and then she's afraid to go back to sleep which is heartbreaking.

We always tell her, "I promise we are working with the doctor to get rid of these!" And we are. We just love her so much and hate that she's going through this. No child deserves this.

Epilepsy brings out a lot of emotions and very little answers.

The Search for Information

Today started off on a bad note as does this post. Michael woke up feeling under the weather so he went to sleep in the other room so he wouldn't get Bug or I sick. Then when we woke Bug up to get ready for her doctor appointment with Dr. Coleman she had a seizure. Doesn't get much worse.

If you don't already know, our pediatric neurologist is Dr. Coleman, his office is located in the Baptist Medical Building in OKC.

Dr. Coleman said that since she is continuing to have seizures but responding to the Phenobarbital he would like to up her dose to 12ml. He wants us to give her 6ml twice daily rather than the full 12ml at night. So tonight we will give her 12ml to make up for the missing lapse that we'll encounter when switching to 6ml twice a day.

We got an explanation for why she had such a major breakthrough while on Phenobarb if he believes this medicine is the right one for her. He said that Phenobarb is an anti-convulsant medication that goes in to fix the root of the problem, often after a patient has been taking it routinely for a long period of time the body may recognize the Phenobarb as a threat and in a sense, attack itself to compensate for the work the Phenobarb has been doing.

He did his routine check of hearing, tracking and visual interest and she passed all with flying colors! We'll see SoonerCare next week to do a developmental assessment on her. Phenobarb has a nasty side effect of slowing brain development and we have noticed it in a few things like reaching and playing with her mirror image.

Dr. Coleman put in the order for her to get a second EEG done in the next couple of weeks. It is normal for a pediatric neurologist to get multiple EEGs because their brains can change, their seizures can change and the brain activity when not in a seizure can change. Rayleigh's last EEG was completely normal which means that her brain acts as any other infant's does when not having a seizure. As much as we do not want our baby to seize, if she does have a seizure during the EEG it helps Dr. Coleman determine what kind of seizure along with where in the brain it is happening.

He also had us go over to the lab and get some blood drawn to do DNA and chromosomal tests to possibly find a reason for her seizures. We'll get the results on the chromosomal analysis within the next couple of weeks and the DNA test will take longer.

The statistics say that 2 out of 3 children with epilepsy outgrow them in their adolescence, Dr. Coleman believes that Rayleigh is still within that statistic because all of her tests are coming back normal and she is responding well to the Phenobarb even with the need to up the dose.

At this point, all we can do is get those seizures under control and do the tests Dr. Coleman wants done to get more answers. Frankly, we hope these DNA and chromosomal analysis come back normal and don't show anything about why she's having seizures so that we're still dealing with something benign.

Here We Go Again

Unfortunately, we are going through a bad time right now with Rayleigh's epilepsy. On Wednesday, September 22, Bug had a seizure when waking up from a nap. We thought, "OK, maybe she had a stressful day that brought on an isolated seizure, we'll call Dr. Coleman if they continue." Then she had another seizure Thursday afternoon. Both of the seizures were under 30 seconds. We immediately called Dr. Coleman's office. He was already out for the day so we spoke with Dr. Norman, the other pediatric neurologist who was on call at the time. She told us that the bloodwork we had done the previous visit showed that her Phenobarbital level was at 30.6, the appropriate level for her age and size is between 20-40 so she was in the normal range. Dr. Norman told us Friday that we had room to bump her up to 11ml nightly. She also said that we could give Bug 12ml that night to jumpstart the dose increase. We were told to still give the medicine 5-7 days to take effect like usual.

Friday she did not have a seizure!

Saturday she had 1. Sunday she had 2. Monday 2, Tuesday 2, and 2 Wednesday (yesterday).

We didn't wait the full 5-7 days before calling Dr. Coleman's office though. We called him Monday morning to let him know about the seizures increasing and he wanted us to go into the lab and get some bloodwork done to check her Phenobarb levels since it had been done a month ago. Then we talked with him on Tuesday after Bug's 6 month well-baby visit with Dr. Albiek. Last month when we saw Dr. Coleman Bug weighted 14 lbs., Dr. Albiek's office weighed her in at 14.6 lbs. Not a major change (She's little like her momma). Dr. Coleman said that her Phenobarb levels actually went up since the last blood was taken because her weight hadn't changed much but we upped the dose to 11ml. Her level is now at 32.

We talked to him again yesterday evening about medicine options since she is still having seizures daily while on Phenobarb. He said that's its hard to tell which way to go at this current point because she had her vaccines done at her 6 month pediatrician visit a few days ago and she was running a low-grade fever. Anytime you're sick, stressed or overly tired you are more likely to seize. On top of that, she got the Rototeq vaccine which is a live virus and can bring about seizures in epileptic children.

Right now we don't have many answers but we are working on getting the seizures under control again. It feels like we're starting over, but at least we have knowledge of what hasn't and what has worked in the past and all of the tests coming back normal.

Today is a good sign, it's 4:00pm and she had not had a seizure at all today. All of the other days she has one or two by this time. She woke up happy from her nap, had a diaper change and ate and now she's playing with her seahorse toy on the floor. Maybe things are starting to look up.

Tomorrow is our monthly checkup with Dr. Coleman.

Six Month Sweetie

Today our wonderful daughter, Rayleigh, turned 6 months old!!! What a major milestone! What can I say? She is an absolute blessing, the light of our lives for sure. Every smile she flashes lights up the world. These have been the most trying but most wonderful 6 months of our lives. She has learned so much in the last 6 months and so have we. 

She has learned where her hands are and how to use them and how to put them straight into her mouth. She has learned how to make sounds to get what she wants, mostly attention. She has learned how to hold her head up high and how to support her back up. She has learned how to roll over to get out of doing tummy time. She's learning how to sit up on her own. And she has learned that she is the most loved little thing around!  

We have learned that we do not need 8 hours of sleep to survive. We have learned that watching TV is overrated. We have learned how to eat dinner in under 15 minutes so at least one of us is finished before she wakes up and wants to be held. We have learned that watching your baby learn to bat at toys can be the most entertaining. We have learned patience is key. We have learned that you can't be out of the house in 5 minutes anymore. We have learned how to pack most efficiently. We have learned that the true sadness is watching your baby hurt. We have learned how to truly love.

Rayleigh, you make this world a better place to be. We are so blessed to be your parents. We love watching you grow and learn new things everyday. We love you more than words can describe. Love, your Dad & Mom.

A Wonderful Saturday

Saturdays for us Cains are always special because it's become our family day. Michael and I are both off work so we make sure to spend time with Bug, minus the occasional Saturday that Michael goes golfing and us girls lounge around the house or maybe do some shopping!

This last Saturday was wonderful beginning to end. Rayleigh and I woke up for the day around 9a. She ate, played, diaper change, and played some more with Mommy. Then I got her dressed in her OU gear (game day!) and did her hair in pigtails for the first time! They turned out super cute if I do say so myself. After fixing up her hair I set her up in her highchair in front of the TV to watch her Your Baby Can Read video which she absolutely loves!

Daddy woke up while she watched her video and he ate his breakfast in the living room with her, singing the Itsy Bitsy Spider song to her along with the video. Then Daddy and Bug played together while Mommy got herself ready.

The day's events including a fun time at the library picking out some books for Bug and then feeding the geese outside the library some bread! Bug really enjoyed hearing all the geese hissing at each other and honking at her for bread! We even got Daddy in on the act!

To wrap up the day we headed over to Gpa & Lovie's to watch some of the OU game. Go Sooners!!! They kicked butt that day! Bug loves to watch the Sooners :)

We then headed home, Bug had a bath while Daddy cooked dinner. She napped while we ate (thank you, Rayleigh) and then she woke up and played on her mat. She won't do tummy time though. She now knows how to roll over and does it immediately after putting her on her belly!

Then it was time for her medicine, eating, reading and off to sleep. Michael had to work overnight last weekend so we were sad to see him go for bedtime but Bug and I snuggled up and kept each other great company!


goodnight