Viola! Crepes for my Cherie

Today I made crepes for the first time. I was flipping through my anniversary present from Mark, my Professional Chef textbook and I decided, why not try to make crepes? I wanted to practice so I could make a special dessert for Mark.

Kaylee was my test subject. OMG, I have never seen her hog down something so quickly!! I sprinkled a little brown sugar on them and served her a side of whip cream for dip (my fav way to eat them).



After she was done with the first one. She was begging me for another. She was signing "more" and pointing to the kitchen.




I made her another one and again she quicky inhaled that one too. I think we found Kaylee's new favorite breakfast. Wait until she tried a stuffed crepe!




Ethan and Javi, my little mop tops, finally got their hair cut today. Unfortunately, I forgot my phone at home, so I couldn't snap any shots after. Javi kept telling me that he was in an old fashioned hair cut place, since it was a real barber shop and not a hair cut place. It was too cute. We grabbed doughnuts for them after, since Winnchel's was right next door to the barber. Both boys look devilishly handsome, of course!

Daddy got Ethan a new game for the iPhone to play. It's a motor cycle supercross game, which is right up his alley! Here Ethan is playing the game in his FOX supercross jammies. He is really getting good at spelling his name all by himself when he gets a high score ;) He's so proud! What a big boy! Someone please stop my children from growing up so fast!




-- Post From My iPhone

Ms. Independence

She seems like she's grown up over night. All the anticipation of when she was going to start walking and talking and now that part is over. Before you know it, she'll be wanting us to drop her off a block away from school so we won't embarrass her in front of her friends. She's a little lady now and quickly acclimating to big girl life. She got her first Starbucks last week. Wish I would have pulled the camera out for that! She had a kids vanilla milk with our neighbor, Audrey, her mom and I. I know she felt pretty cool to be having Starbucks with the big people ;)

The time just seems to fly by! We are considering converting her crib in to a big girl bed. She keeps getting her leg caught in between the slats. She keeps protesting her naps and hasn't really taken a nap all week. I am not ready for my little darling to grow up. I guess that's just how it is with the baby of the family.

G5 Weekend Report

Hope everyone had a great weekend. We had a nice relaxing weekend.  Friday I cooked an enormous dinner, which I enjoyed making, thoroughly.  Everything from scratch, just as I like to do.  I suppose I was inspired by watching the movie Tortilla Soup on Thursday while I was folding what seemed like a mountain of laundry.  I spent most of the afternoon cooking.  I made corn tortillas, roasted salsa, tortilla soup, enchiladas beans and rice.  I was a little disappointed that the tortillas had kind of a funny aftertaste.  I am guessing because the masa may have gone stale.  It had been in the cabinet for quite a while.  I didn't know that it could, but I guess it's just as perishable as anything else.  I made a mole enchilada sauce and a Mexican beef roast as filling.  The roast practically fell apart when I was preparing the meat to go in the chili mole sauce for the enchiladas, which is just the way I like it.  Ethan liked the "chippy soup" (tortilla soup) as we called it, which was very surprising.  It's garnished with creama (kinda of sour cream) and cilantro.

Saturday we went to Kaylee's first real playdate (meaning a play date that was actually scheduled for her).  We went to a meet up with the families from my speech class.  It was the first time we had actually seen all the kids in person.  We get to watch videos of each other utilizing the techniques we learn in class.  The kids were so cute!!  Kaylee had a really good time.  So did Ethan!  He didn't want to leave.  They had other children that Ethan played with that were more his age.  Kaylee really like playing with our host's eldest daughter.  It was nice to see her get some time in with a "big sister" type.  The girl also seemed thrilled since she has all younger brothers.  She was fascinated to get to play with a little girl.  We headed out to the outlet mall after that to pick up some much needed clothes for Mark and Kay.  

We relaxed the rest of the day.  We watched AFV for the first time with Ethan.  Man, was it a crack up to see him laughing at all the video clips.  I think it was funnier to watch him react then it was to watch the videos themselves!

Sunday, we made some time to teach Ethan how to ride a bike with training wheels.  Javi never rides his bike.  He just never really took to it.  He's always been more interested in his scooter or skate boards.  Although the bike is too big for him, he did a really good job pedaling.  We decided it was time to get Ethan a bike of his own, so I think I will take a look at the second hand sports shop to get him a little 12" bike.  He won't need it for more than a year or two at best, so we thought it better not to spend too much. 

Here's a clip of him riding with Mark teaching him.

MRI on Friday

We are bound for Children's Hospital early tomorrow morning for Kay's MRI.  We hope everything goes off with out a hitch.  It's always a little nerve racking to have a little one under anesthesia.  We are hoping to be in and out in a few hours.  Of course, we won't know the results right away, but we aren't anticipating anything.  It's really just to follow up with the TSC, check for tubers and also to see how the seizures affected her brain.  We know she had some slowing in the occipital lobe that was most likely from the IS, but it doesn't seem to be slowing Kaylee down, that's for sure!!

Wish us luck and hope for a quick discharge :)

A Very Bunny Visit

Clearly, Fairfax, from Marissasbunny.com  (a site that promotes Infantile Spasms Awareness), was a bunny on the loose! He went from the east coast to the west coast. Now, he's on his way to middle America. Who knows where the wind will blow him next.

We were able to grab a latte with Fairfax, California style. He said he likes his coffee like he likes all the children he visits, SWEET!!



We also took Fairfax out for a Valentine dinner to Cheeburger Cheeburger where he was delighted to take a spin in a convertible.



We took him from San Diego to Los Angeles to pick up Grandma, then to the bright light city of Las Vegas, NV. Wish we could have gotten a night time shot of him on the strip, but we only went out at night once and he said he was so tired from the long drive, he wanted to rest in the stroller (we actually were so excited about the volcano, we forgot to get a shot of him).

Fairfax is enjoying the rare view of California's snow capped mountains.

Fairfax is helping to navigate.

Fairfax, in the middle of downtown Las Vegas

Fairfax had fun at Shark Reef Aquarium in Mandalay Bay, Las Vegas

We ended our visit with Fairfax with taking him to KIDS Therapy where Kaylee receives her occupational therapy and physical therapy.


We sure had a great time visiting with him!! Hope he has a safe journey!

SHE WALKS!!!

Though she actually took her first solo steps, two to be exact, on
February 12th. I promised I would not blog about it until she stood in
the middle of the floor unassisted and took three steps, so we could
techically consider it "walking". Yay Kaylee! You're on your way!

Rent-a-Wreck

Need a demolition crew? Call Kaylee.  Fast and efficient. She managed this job in just under 10 minutes while I was cooking dinner. 

Funny how the spilled orzo formed a 5.

Trip to Dr. Neuro

This was another easy appointment.  We've had a lot of appointments, but thank goodness they have been easy!  Kay got a clean bill of health from Dr. Neuro.  We are still scheduling her repeat MRI, since it's been a while since she had one (last time was when she was 5 weeks old).  He said he would like to see her pick up in the development department, but otherwise is satisfied with her progress.  He thinks with continued therapy that things will pick up.  He definitely recommended adding speech therapy to her regime.  

We have also decided to switch AED meds.  We are going to scale off the Topamax and try Trileptal. The Topamax has worked great, but the doc and I feel pretty confident that she has beaten the IS, FINALLY!  Yay!! We believe that the Topamax may be effecting her speech, since her cognitive skills are fantastic, but she just doesn't talk much.  She says less than 10 words at 18 months.  The only way to see if it's seizure or drug related is to switch things up.  We are also hopeful that she will finally grow some hair too (hair loss is another Topamax side effect).  Not that her baldy little head isn't cute, but it's sad when she wants to put bows in and brush her non-existent hair.  She rests all my ponytail bands and barrettes on top of her head and does a kind of "TA-DA".  It's cute ;)  So, hi ho, hi ho, it's off to the drug store we go this afternoon.  Hoping we don't get any static from the insurance company with the new drug, like we did with the Keppra.  Doc said he has had good luck with insurance companies and Trileptal, so we shouldn't have a problem.  So we begin our three week scale down today.  Here's the schedule:

Week 1- 3 pills at each dose time, 90mg per day

Week 2- 2 pills at each dose time, 60mg per day.

Week 3- 1 pill at each dose time, 30mg per day.

All the while she will be going up on the Trileptal.  So fingers crossed everyone!  The Trileptal seems to have pretty much the same side effects as the Keppra, which were minimal, so we are hopeful it will work.

On a side note about Dr. Neuro...we got Javi's EEG scheduled to get him checked out.  He will have a few hour, sleep deprived EEG in March.

Kaylee's New Words

Kaylee said two new words today!!

We were at my friend Carrie's house today and Kaylee pointed to her dog Betty and said "Ook, DOG!" and pointed to the dog!!

Tonight, we were folding laundry and she said "OCK" for sock!!

So happy that she is now consistently using the signs EAT when she is hungry too. Thanks to Signing Times!

Kaylee Dances to Elmo

Kaylee was so cute this morning.  She was playing with her little Elmo toy and shaking her hips.  I love to see her dancing.  It gives me hope that I will someday have my little cheerleader.  I was in dance and cheerleading and I always wanted a daughter that would share the same love for dancing.  

Of course, I know kids do their own thing, but I think I can hope that I will have my little dancer for a few years while she is little. 

The therapist says that her love for dancing will really help her want to walk.  Maybe we can find a dance class where she is allowed to use her walker if she still needs it as a toddler.

On another note, I did speak with the service coordinator from the Regional Center.  He recommended a place in Poway (the next town) that sells gently used medical and handicapped assistance items.  I am going to try to see if I can find them on the web today (he didn't have the name of the biz).  They may have the posterior pedi walker I am looking for.  All her therapists agree that she will probably take off and run with a walker.  She is in to everything already, so I can only imagine.

The service coordinator also said to let him know all her measurements for orthotics and we can order them through the Regional Center.  Apparently, it's difficult to get a good fit for the shoe in an infant size and they have a place that does it.   Kaylee is still pronating her feet, which we thought over time it may correct itself, but it hasn't.  PT is going to see how she walks with hard bottom shoes before she makes a final decision.

Well, we are off to Costco in a few.  Going to do some cleaning and cake making today.  Have some friends and family that could use a little pick me up, so I am going to try out the cupcakes in a jar.  My friend Sharon makes delicious cupcakes in a jar and the most beautiful cakes I have ever seen, so we are using her recipe.  I may try a GFCF version too.

Dr. Genes Visit

Before we said our good bye's to Grandma Audrey, we went to our appointment with Dr. Genes. It was a very long wait because their computer system was down. They had said they would call us when it was our turn (they usually hand out pagers, it's such a large waiting room), but apparently the pagers don't work with the computer system down.

We waited...and waited and waited some more. Finally, a woman approached us and asked if I was Kaylee's mom. I don't know how she knew it was us, since the waiting room had about 50-60 people in it. It was the doctor's assistant, whom we had never met, since it was the first time we had seen Dr. Genes. I guess they had tried calling our house and didn't get an answer. With all the chaos in the waiting room, I guess she just decided to do a sweep to see if there was anyone that looked like a Kaylee in the room that was her age :) They said they had also tried calling us 3x's in the waiting room, but we never heard our name. We were only sitting about 10 feet from the reception desk, so you think we would have heard.

After about an hour and twenty minute wait we were finally taken back to an exam room.

Next, we had a young doc come and talk to us. She was the resident for Dr. Genes. She was a very sweet woman who was very smitten with Kaylee, especially since Kaylee was all dressed up in her fancy outfit complete with her red beret. She gave Ethan a Halloween treat while we discussed our background. We went through the usual questions about pregnancy, birth, family history, etc. Then Dr. Genes came in to examine Kaylee. He practically went over her with a magnifying glass. He was so thorough. He then did a Wood's Lamp test with the help of Dr. Resident who had to go borrow the Wood's Lamp from the ED. Just as we thought, the exam revealed no shagreen patches or hypo-pigmentation.

Dr. Genes wants the entire family to get tested. He said that since her mutation is one that they have never seen before, they will want to do a comparative study with our genes.

So, now the long process of getting it approved through insurance...

Quick Kaylee Update

Kaylee has been doing marvelously over the past few days since being released from the hospital. No seizures or spasms that we have witnessed and she seems to be getting used to her new high dose of Topamax. She had a rough first few days, it made her wakeful and a little irritable, but at the same time a little lethargic. Think it was the lack of sleep! I was also out of town, which didn't make things any easier on her, poor baby!!

Yesterday, she stood up for the first time, totally unassisted!!!! Hooray! Wish I was quick enough to get a shot of it with the camera. We are one step closer to walking!!

Soon she'll be chasing after her boyfriend!

Ok, gotta run to PT. Can't wait to share the exciting news with them!

Back to Children's

We are all packed up and ready to go for our 24 hour vEEG. I have been pushing for it thinking that he would schedule us sooner than next month with all the recent activity. I called this morning about her increased spasms and CP seizures and left a message. A few hours later he called and left a message that he wanted to get us in tomorrow morning. EEG called us by 2PM and had us scheduled for 8AM tomorrow morning. Dr. Neuro mentioned in his message that he wanted to talk to us about treatment if the EEG reveals what we think it will reveal, that she is in fact having more clusters and complex partials. I am not sure if we will still be going in the same direction we had planned after he said that.

Kay isn't really sleeping well at night. We think that she may be having seizures at night, since this all began at the same time we noticed the increase in activity and before we increased the Topamax dose. Today the count for seizures I witnessed was two clusters and two CP's. Clusters usually last a little while, so I feel like I can catch most of those. Some of her CP's only last for a few seconds so there's a good chance I missed some, since I cannot hover over her all day (who can? She's always on the move, crawling around and getting in to everything! the little stinker!).

I will send updates from the hospital. I guess we will find out more info after he reads the EEG. Hoping for the best, but still preparing for what may lie ahead.

A Day of Beauty

Kay and Emmie getting their hair done. Kay looked pretty funny with the rollers in her hair.

Kay's First Portraits

vEEG Update

We just got off the phone with the tech.  We are scheduled for Nov 10th for a 24 hour overnight.  I know it seems like a long time from now, but when it does happen, hopefully it will be a vindication that the worst is behind us.  Kaylee is continuing to make progress and we are hopeful that she will be walking in the next couple of months.  

Frustrated

I am so frustrated with the EEG department at our Children's. We have been trying to schedule an EEG for nearly a month now. First, the doc said we had to wait for approval and they would call when it was approved. So me, trying to be patient, I waited two and a half weeks to call to see what was happening. I called the insurance group to see where we were at and they said, "Oh, you don't need approval. You just need a referral." UGH!!

So I called the doc, they transferred me to the EEG department and gave me the direct phone number. Well, that was on Monday. Left a voicemail, no call back. Wednesday, left another voicemail, no call back. Thursday, called again, then got voicemail and decided to press the extension for emergencies or immediate contact and it kicked back to the same voicemail!!!! Ahhhh!!! So then, I hung up and called the neuro's assistant. I got her voicemail. She did call back an hour later and said she tried to contact them, but they were gone for the day. She asked me when I would like to be scheduled, in case she could just make the appointment for me when she called them this morning. To which I said, ASAP, just needed a 24 hour notice to arrange for childcare.

The assistant did call me back this morning while we were in therapy and got my voicemail. She said that she spoke with a tech and that they would be calling me this afternoon to schedule. Well, guess what????

NO PHONE CALL!!!!!!!!

If it's taken me a week, just to try to get a hold of them, and still unsuccessful, it may be a month before we can actually get an appointment. I'm ready to just go down to the hospital and demand an appointment.

Kaylee Signs

We have really been working on the signing.  So far we have two signs down.  We just started, so that is not too bad.  She does these two on voice command only.  We have been using Signing Times. We still don't have many words yet, in fact she is only making the "ma ma", "da da", "ooo" and "hmm" sounds for the most part. We get an occasional "ga ga" and "ba ba". She seems to be saying ma ma and da da discriminately, since she says it when ever she sees either of us. We are hoping that with the use of the signing, it will reinforce the speech.

Note to self...

Always check the Diaper Champ for a garbage bag. You never know when your husband will be a nice daddy and take the full bag out. I assumed that I was the only one that emptied it, so silly me, I keep throwing diapers in!! The horror!! The putrescent aroma that filled the air upon unmasking the lid to the dreaded diaper chamber. One whiff had me gagging all the way down the stairs. I carried the can down as if it were radioactive waste. My husband reminded me that all that came out of my delicate, pretty princess. As if I needed reminding. One whiff and I remembered all the nasty nappies that him been thrown in there all week.

Maybe I need to give her less raisins...

My Cherub

I took this picture of Kaylee while she was sleeping this morning. All that I could think of was she looked just like a cherub. I was trying to rush out of the house because we were running late for physical therapy, but this was too cute. I had to stop and appreciate this sleeping angel and take a pic.



Doesn't she look like she is playing her horn?? Maybe she was dreaming of her time when she was an angel?



I swear I didn't move her. This was her natural position when I walked in her room. Awe...she's definitely a keeper.