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!