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



Zoo Adventure

We take Rayleigh to the zoo often! She absolutely loves her zoo trips. She enjoys being outside in general but then add other people and the animals to see and she has it made! It's a great family thing for Michael and I to do with her and we also like taking her with her grandmas!

Last Saturday Michael went golfing with Gpa so Susie (Lovie) and I took Rayleigh to the zoo for a little bit. We started out by going through the meerkats, red koalas and that row and then hit up the tropical island building. Bug didn't enjoy it inside the humid building so we took her through quickly and then out to the long back deck where the flamingos and tortoises are.

headed from there to the Oklahoma Trails. On our way to the OK Trails we heard some roaring so headed into the Cat Forest. First up we saw a gorgeous tiger pacing by the fence, Bug was starting to drift off for her morning nap at this point. That is, until she heard that tiger start roaring. Loud, powerful roaring. I thought she might freak a little but she really liked it! Then we headed through the rest of the Cat Forrest seeing lots of little cats, snow leopards lounging, another tiger asleep, couldn't find a few like always and then we get to the jaguars. Orange and black spotted, a momma and her 1 year old cub. Rayleigh got to see them play with each other for a little bit before she finally conked out for her nap.

Next we went through the Oklahoma Trails. Our favorite part of the Oklahoma City Zoo! We saw all of our usuals out playing - bobcats, cougars, raccoons, swift fox, badger, brown bears (one swimming & one right up on the glass) and then we headed to the main indoor building of the OK Trails... you know, the one that you can see the brown bear on one side and the black bears and otters on the other side? First thing we do when we get inside is change Bug's diaper (the joys of parenting!) and then she's hungry. Luckily, I had pumped a bottle that morning and was prepared; good thing because this building was busy! We're walking through quickly and Lovie is feeding Bug and a bench opens up near the exit doors so we go sit there so Bug can eat. We're talking away and don't really notice but a crowd is ganging up around the door.

Suddenly, there are over 50 people in this building and no one is leaving. Right next to us there is a zoo official telling the crowd that a chimpanzee has gotten out of his exhibit and into the dry moat that surrounds his exhibit! This exact issue happened the previous Monday and Lovie & I were just talking about it on the way to the zoo! It's kind of hectic and I'm searching the crowd to see if there's someone who might need the bench more than I do. Kids are playing, babies crying, mom's looking stressed, dad's looking upset and grandparents looking like they just want to go home! And then there's Lovie & I just sitting there playing with Bug waiting it out.

Luckily this only lasted about 30-45 minutes and then they let everyone out. It looked like over 100 people leaving this building all at the same time!! The zoo official said, "The issue is not resolved but it is no longer a threat." I would like to know when it was a threat if the issue is the same? Oh well, it was a new zoo adventure for Bug!

Garden Party

We have recently joined OPAT. OPAT stands for the Oklahoma Parents as Teachers program. We are in the Putnam City division. OPAT provides many educational tools in helping your baby have fun and learn at the same time! Part of OPAT includes parties where all members bring their children to enjoy a day of fun! Also, your parent educator meets with you monthly to show toys that are appropriate for that age, see how baby is developing and help with any questions you might have. Our dear friends, Luke & Candace, introduced us to OPAT (thank you!)

August 20th was the first party of the year, outdoors and garden themed. Michael and I were excited to take Rayleigh and see what the parties are all about! We arrive and are welcomed by the parent educators with open arms. The setup is great - gazebo with books all over, blankets laid out in the grass with toys, bubbles, plants, paint, slides and all that good stuff. Michael and I first head into the gazebo and read Rayleigh some books. Shortly after we got there, Luke & Candace arrive with Maddie, Rayleigh's best friend. So we all hang out under the gazebo for a little bit and then the activities begin. The main one being a small flower pot that Rayleigh puts her hand prints (and feet in her case) on and then plant some greenery in to take home.

We had a great time playing on the blanket outdoors. Rayleigh always enjoys being outside, especially when there's so much to see... like other kids!!

Another highlight of the party was Rayleigh feeling sand in her toes for the first time. There was a huge sandbox and Michael thought it would be a great idea to stand her in it. We had no idea how she would react but she really seemed to enjoy it! She kept cooing and even flashed a couple smiles at the other ladies checking her out. Adorable. Then we took her over to these huge buckets full of water with kiddie watering cans which we used to clean the sand off her feet.

Once it was time to leave we received door prizes of seed packs, information for gardening with your little one and a Bendon Bear book! We'll be seeing Marilyn, our parent educator, for the first time in the next couple weeks and I can't wait!

Neuroligist Follow Up

Today Rayleigh had her 5 month follow up with Dr. Coleman, her pediatric neurologist. He pretty much just wants to see how she's developing, how she's doing on Phenobarb, answer any questions we may have, check her reflexes, make sure she's tracking and get her weight.

Yesterday, at 5a, Rayleigh woke up with a seizure. It was heartbreaking. More so than usual I think, because Michael and I were really hopeful that she was outgrowing them as Benign Neonatal Seizures (that are outgrown from 4-6 months old).

When we first arrive the nurse weighs her in at 13.9 lbs. Last month at her visit with Coleman she was 13 lbs, 2 weeks ago at her pediatrician's visit she was 13.5 lbs. Dr. Coleman said that he would like us to go ahead and bump her up to 10ml. 1.) Because she has had 2 seizures in the last 2 weeks, 2.) Because she has gained weight and 3.) Because her metabolism is become more efficient at digesting the medicine. He ordered blood work to check her current Phenobarb levels at 9ml since he thinks they might now be lower than the normal range.

Next, Dr. Coleman assessed her development. He watched her track a toy and make eye contact with him. He used a metal tuning device to make sure she follows sound. He held her to see her neck, back and leg strength. He felt her soft spot and flat spot on her head. He used a light to check in her eyes and mouth (got a kick out of her when she puckered up to the light and then tried to lick it!) and lastly he checked her reflexes. He said that everything he can tell is progressing perfectly normal but if we have any concerns we can contact SoonerCare and they will come to our house and spend an hour or so with Rayleigh and check her development for free. He said this to us because we were asking a lot of questions about her development for her age being on Phenobarb which is known to slow motor skills or mental development if the levels get too high. Luckily, this is why Dr. Coleman stays on top of her Phenobarb levels and doesn't just throw out a high number dosage that will stop them for sure.

We declined on the SoonerCare offer for now because we have joined OPAT and our "parent educator" will come by monthly to do the development assessment. But that's another post for another time.

We asked Dr. Coleman, "Since she had one yesterday morning and she's now 5 months old is it looking like she does NOT have Benign Neonatal Seizures?" His answer, "The chances of her having benign neonatal are smaller now that there's only a month left for her to grow out of them. BUT, I still think there is a big probability that they are benign seizures that she will grow out of during her infancy. Meaning, anytime from now until she's 1 year old. What I would like to do is keep her on the Phenobarbital to treat the seizures and watch her. If she goes 3-6 months without any seizure at all we can take her off the Phenobarb to see if she's outgrown them." So again, we are left with a waiting game.

Dr. Coleman said that he has only seen 3 or 4 patients that have had benign neonatal but has had several infants that grew out of their seizures within the first year.

One thing that kind of got Michael and I worried was hearing that some children that outgrow their seizures young CAN have seizures come back again, usually brought on by puberty. He said he couldn't really give us a percentage or anything because there haven't been enough studies on that fact yet. Course of action for that scenario is to treat the seizures with an anti-convulsant again. Then, those seizures may or may not be grown out of again.

Also, when Michael was holding Bug so that I could take notes Dr. Coleman was checking her reflexes and watching her take in her environment and he was just kind of thinking out loud while assessing and said, "I notice here that she seems to be clinching her fists. Does she do that often? How hard does she clench them?" I answered that she doesn't really clinch them tight at all and it doesn't really seem that often. It seemed like she was just doing it in his office because she was cold. And then Michael got a little bit freaked out and asked what that means that she's making a fist and what we need to do and all that. Dr. Coleman said, "I'm sorry, I wasn't saying that with the intention of worrying you two. I was just noting that her hands have been closed more today than normal. It can be a sign of slower development mentally. But I don't think that's the case here at all because she's not clenching tight at all. Normally it's an issue when they close their fists really tight and won't let you open them. With her, I can barely touch her hand and she opens them. Also, she opens her hand sporatically and babies with that issue do not open them on their own." So that eased my mind but Michael is watching her hands like a hawk.

So overall we got some new answers, whether we like them or not, like she probably doesn't have benign neonatal, most likely has some form of benign because all tests are normal, developing normally, stress from Wednesday night (teething AND gas) caused the seizure yesterday, and we'll hope that she goes seizure free from here on out so we can wean her off the Phenobarb in a few months.

Phenobarb levels. We take her over to the Main Lab in Baptist Integris. We've also had her blood drawn in the ER there and in a different DLO lab in Baptist but had bad experiences both places. We don't blame them though, babies have small veins! We go to the Main Lab because she's been there 3 times before and they always get her with the first stick and get enough quickly. Well, this time was a whole different story. Rayleigh was already tired, she wouldn't take her morning nap, she wanted to play with Dr. Coleman instead. We go in, Bug lays on the bed, I soothe her and Michael holds her legs. The two ladies begin looking for the best vein. I'll admit, Bug's vein were impossible today. They normally get the best out of her left inner elbow or right hand. They tried to find one on her left inner elbow but you couldn't see a thing. I see a little purple spot on her right inner elbow and point it out to them so we flip Bug around for them. Well the younger of the 2, obviously new, holds Bug's arm all funky so the older can band it near her shoulder and stick her. Well, she sticks the needle in super far and all the while Bug is screaming, then she begins wiggling the needle around for a while trying to hit the vein. She sees our faces and gets the needle out. She then goes for Bug's hand, pricks this small little vein, misses, wiggles, gets out. Flips Bug around, starts tapping Bug's other hand, rubbing, tying, folder her hand down, the works. She gets one tiny one to pop up pretty well and is about to stick the needle in but the younger one isn't holding Bug very well and she wiggles and got poked in the middle of her hand! The older lady gets the younger one to hold her better and then attempts AGAIN... misses, leaves the room hollering for another lady. This lady comes in with her needle, folds Bug's arm, pricks the vein in her hand and gets the blood so quick.

Bug has epilepsy. She has a higher chance of having a seizure after being stressed. This was very stressful on her. I'm worried. Hopefully we soothed her enough after (I fed her and Michael bounced her to sleep) that it won't affect her. In the end, they got the blood they needed so that we don't have to take Bug up there again tomorrow to get it. Let me just say this, it is not fun to watch your daughter get pricked with a needle. It is not fun to watch your daughter bleed. It is not fun for them to poke her 4 times and fail. It was a not-fun experience for all who were involved.

So right now all we can do is treat the seizures with the Phenobarbital and hope to never see another one ever.

She's a strong girl and we love her so very much. More every minute every day.

Meeting Their Neice for the First Time

Rayleigh has a ton of people who truly care and love her. Unfortunately, there are some who are not as close to Bug as we would like. Geographically, that is. My mom, younger brother and younger sister (all of whom I am super close to) live in Florida now. My mom was here in OKC for Rayleigh's birth but had to get back home after a few days :( My brother, Charlie, and sister, Sierra, had never met Rayleigh. They had heard her cries or coos in the background when we're all on the phone but with them in school we would just have to wait a few months until summer break.

Towards the end of July Mom brought the kids here to meet little Bug! It hadn't even been a year since the last time I saw them but MAN how they had changed!! I saw pictures of them throughout the school year but they couldn't really show the difference I suppose. Charlie, now 14 years old, is such a teenage boy. A guy's guy who plays football, texts girls nonstop, and wouldn't been seen in the mall walking with his older sister (me) and a baby stroller! All this aside, Bug drew him in like a magnet. He is already a wonderful uncle to her!

Sierra, who turns 9 tomorrow, already acts like a teenager! On Mom's cell phone all the time talking to her girl friends back home. Dressing up, doing her hair, playing the Wii, putting on makeup, playing on her iPod and arguing. Those are the things she would be doing if she wasn't playing with Bug... which she was most of their trip.

Which brings us back to my mom, Rayleigh's grandma. My mom would get Rayleigh and hold her and play with her for all of about 5 minutes before one of the kids took her away to play on her mat or sit on their lap. Poor Mom. I think she maybe got to hold Rayleigh for a total of 1 hour the entire 10 days they were here.

It was so great to have them here and for Charlie and Sierra to meet their neice who they so obviously adore. We tried to get out and do things that we normally would do but it was just too stinking hot for a lot of things! We took them to the zoo, to hike Martin Nature Trail Park, bowling with Uncle Dan, swimming at GPa's apartment's pool, and shopping at the mall. But other than that, we mostly stayed in and hung out! We would hang out at my house where they were staying or we would go over Aunt Debbie & Uncle Dan's house (Mom's sister and brother-in-law). It was so great to all get together like that. Just like old times.

Aunt Debbie & Rayleigh Bug

Uncle Dan with Bug

Charlie's "Seriously? You have the camera out AGAIN?!?" face.

And then time went by too fast like it usually does and it was the day for them to leave. I must have cried 15 times. Just knowing that they won't get to see Bug on a normal basis like the other grandparents and aunts/uncles breaks my heart. I'm thinking of getting a webcam for my laptop so we can maybe at least do some video chat... right now all we do is phone, e-mail and send pictures! I'm hopeful that someday down the road they will move back home to Oklahoma and we can all be together again because it was the best week of the summer by far!!

I love you, Mom. Rayleigh is doing so much better and I can't wait for you to see her again! Give the kids hugs for me, I'll call Sierra tomorrow to wish her a Happy Birthday!!!