Fantastic Fall News!!

Hello Friends and Family,

Marleigh recently had an appointment with her Neurologist, Dr. Harley Kornblum and her final evaluation from her infant development specialist. Good news all the way around!

Dr. Kornblum says we can reduce her dose of anti-seizure medicine to 50mg per/day which is half of the previous dose. We need to keep an eye on her but if she continues to do well he may take her off completely when she turns 2. He is happy with her development and said that she is doing better than 90% of the children who are diagnosed with Infantile Spasms. Her language skills are still behind so we are going to keep an eye on that. She will always be at an increased risk for seizures because of patterns on her EEG and the lesion on her brain but we just need to stay positive and hope that she continues to do well.

Dr. Kornblum will continue to be our doctor, we will just fly out a couple times a year to meet with him. Any tests can be done in Chicago and hopefully we find a nice pediatrician there. We love UCLA they have been soo good to us and we feel really fortunate that we had such a skilled team of doctors who had a lot of experience with this disorder.

Kelly, the Infant Development Specialist, has been terrific. Today she tested at approximately 3 months delayed. This is good news because when they did her 6 month review (that is 6 months from her first meeting with Kelly) she was testing at 9 months when she was actually 1 year. So she is continuing to develop at a steady rate. The severity percentage of the delay changes as children age. So 3 months behind when you are 9 months old is a 33% delay, but 3 months behind at 15 months is a 21% delay. So if she continues to develop at this rate then 3 months behind at 3 years is only a 12% delay.



They said if we were just coming to them now, Marleigh wouldn't qualify for treatment because she is doing so well. We do need to watch her speech. While she is quite the chatter box she only has a few words: Dada (of course!), Thank You, Bye-bye, Hi, and Doggie. Some get more use than others but as long as she has ten words that she uses consistently by age 2 then he said not to worry. I'm concerned that she might not be hearing very well because it is possible that Dylan's problem with his inner ear not draining properly could be hereditary. So we are watching carefully. Marleigh has an ear infection right now.

And finally, she started walking!!! Yay Marleigh!!

Thanks to everyone for your support and happy thoughts! If you want to see Halloween photos I am going to add them to the Neumeyer West blog.

Hugs,
Erin & Family

Check out Marleigh Walking!

Family Pics Santa Monica Pier

My good friend Elizabeth took these amazing photos of our family under the Santa Monica Pier last weekend!

Summer LA Style

I have been meaning to update this blog for many moons, but the days are going by soo quickly I never seem to get to it! This photo is from our most recent trip to the Long Beach Aquarium.

We still have therapy in our home 2x a week for Marleigh and she is doing really well. Lindsey, the OT, says she may even take her first step sometime in the next few weeks. She is getting stronger every week and cruising along the couch and coffee table.

Dylan and Marleigh are on a giant Sequioa tree in Sequioa National Park in August. Mar is getting lots of teeth (4 on top, 2 on bottom) and her eyes are this beautiful hazel color. Still no hair to speak of, it seems like it is getting thicker but not actually gaining any length. So far she seems like a brunette.

We are having tons of fun with her and Dylan is such an amazing older brother. He is so sweet to her. If Mar gets upset while we are driving, he will sing to her and get her to stop crying, it is just so nice to see. I'm not saying he has never grabbed something out of her hand or knocked her over, or even hit her over the head but he's pretty good about saying "Sorry Mar" right away and trying to make it right (especially when he gets caught).



This is a photo of Mar after Dylan accidentally sprayed her with mud from the garden. She had been wearing this white dress for approximately 10 minutes.





















We went camping in Pismo Beach and had a blast! Next time we'll camp right on the beach.












They are soo cute in the bath together - Adorable!!






We are outside of a biker breakfast restaurant up in Malibu canyon. We met Ken, who rode his Ducate there - but his wife and son Liam *pictured* drove seperately as did we. These gas pumps have been there forever and inside there are about 2000 photos of people in front of them.

July, Oh MY!

Wow, I cannot believe it is July already. We have been very busy around here, doing what... I have no idea. We did go to the 4th of July parade, we walked down to Main street and cheered for our fire fighters. And my friend Elizabeth hosted a birthday party for Mar - we mostly cancelled due to illness in my family and in her's. But then we thought our kids probably have the same cold so we figured it couldn't hurt to spend more time with them. They hang out all day at school anyway. But we let the other Mom's off the hook. No one wants to be sick in the summer!! I don't have the photos from the party so I'll have to post them later.

Here she is with Daddy playing guitar!







Marleigh is doing so good it is hard to believe how sick she was (or how chubby!). We still have her therapists coming two times a week and she is a bit delayed in a few areas but she's coming along. Her latest accomplishments include, pulling to stand and cruising along the furniture. She seems to only be able to go to her right, which really ticks her off (my interpretation anyway).

Over the weekend, she even slept all the way through the night - I woke up at 3 am out of habit just to make sure she was OK.
Of course now we are all sick with this cruddy cough - Yuck. But Marleigh seems to have it the least, it is like she has a super immune system. I know she didn't get that from me, I get whatever Dylan brings home from pre-school.

Here are some photos from her last EEG - she's trying to get a look at Conrad while he attaches the leads - once they are on though she's ready to have fun! Nothing get's her down, and her laugh is contagious ;)

She's also getting some more teeth! Not the ones you'd expect. She seems to be growing her vampire fangs out on top. I have been meaning to do her official 1 year old photos and if I don't do it soon she'll look dramatically different with thos teeth! I made her a special tiny three-layer cake. I had to put it in the freezer because it has been a 2-day project and if it is frozen then I won't try to eat it....no that's not why it's frozen. I read somewhere it was easier to frost - but the frosting I have is like taffy and I can't get it to look very cute. But it is pink, so that will have to do. I am not starting over! And yes, it is the first time I have ever stacked cake. I'm sure I'll be making cakes that look like a princess in the near future!

Well I'll try to add more photos soon from the Bday!
Hugs,
Erin

Great News!!

WOW! We are having a great week!! We heard from Dr. Kornblum and Marleigh's EEG came back looking better than I expected. The displaysia still showed up (and it always will) but the rest of her brain has normalized. At this time there are no indications of seizure activity - Yay!

What does this mean? In a nutshell one of the following 3 things are equally likely to happen:
1. Marleigh continues to develop, never has another seizure and may only be slightly delayed (we are unsure if she will suffer a lasting dissability or if any slowness will be nominal).

2. Marleigh does develop some form of epilepsy but it is controllable by medicine.

3. Marleigh developes epilepsy but it is not controllable by medicine and will require surgery.

Obviously we are really hoping that it will be #1!!

She has had a great week, like I said, and has started getting on her hands and knees, pulling herself up on the coffee table to her knees, and started to self feed. And she is getting really good at peek-a-boo! I'll try to post a video soon.

Well, am pretty beat. Dylan was sick today so we are hoping that no one else gets it since it is a nice long weekend. He might have to miss soccer tomorrow. And we think that Mika has a bladder infection so we will be bringing her to the vet. And we are hunting for a new rental - hopefully a nice house with a yard that is surprisingly affordable for the terrific area it is located in. We have applied for a home that mostly meets our needs, but this will be the 3rd one we have tried for so we're not getting our hopes up until the lease is signed. That will mean one more year here for better or worse.

Hugs,
Erin

EEG May 09

Hi - I'll have to post photos later but I wanted to let you know that we had a 6 hour EEG today to see how Marleigh is doing.
She handled it pretty well and only cried when he pulled the sticky tape out of her hair (hey, that would probably make me cry too!) Not sure when I'll have the results but the EEG tech said he could still see some asymmetry in the reading. That probably means that she has stayed about the same. But who knows, maybe we'll reduce the dose of her anti-seizure meds.

Developmentally she is doing great, even starting to catch up in a few areas. She is still not crawling, but it may not be that far off!

Dylan LOVES his little sister!

More soon!
Hugs,
Erin

Maaahvolous March

Hi everyone - We have been having soo much fun lately that I have forgotten to blog!
Marleigh is absolutely adorable and getting much thinner too. Dylan is the best big brother - he is soo sweet to her.


We do have some good news. Marleigh is no longer on Blood Pressure medicine! YAY! She is back down to 70/40 which is just about right for a baby. What a relief, now we do not have to go to the doctors office every week. Of course on her last visit (this past Friday) she was diagnosed with a double ear infection! Good Grief right? Hopefully she won't have the same problem as Dylan and need tubes put in. She is starting to get those two teeth on the bottom so that is probably contributing to her discomfort.

Probably in May we will have an overnight EEG in the hospital to see if things are starting to normalize. So I'll let you know how that goes.

In the meantime we have lots of fun things planned. It is Dylan's birthday this week (4 years old!!) and Keith's Mom Kathy flies in on Wednesday. Then later in April we are heading to Florida to visit my Mom, Uncle Kirk, Great Aunty Mary, hopefully Uncle Billy (&family) and several friends.

Here we are at Disneyland - it was sort of an early Birthday Present to Dylan and I. We went with our good friends and had a wonderful time.

Things with her OT and Infant Development Specialist are going great. She is making huge improvements each week, and can even sit up all by herself now. We are working on strengthing her arms and legs so she can work toward crawling. Her new thing is rolling from her back to her front - sometimes she rolls back to her back too! It is like she is spring-loaded. The moment I set her on her back she pops over to her tummy. And she is a chatterbox!

It is so wonderful to feel like we have a normal baby. I still get lots of comments on her chubby cheeks but now I don't feel like I need to do a lot of explaining. It is such a relief, I just keep trying to stay positive and hope that the worst is behind us.

The other day I sat her in the grocery cart seat, so she was getting a lot of attention. A Dad stopped us on our way in to the store and he said there is an old Chinese proverb that says a bald head on a baby with who smiles easily is a sign of great intelligence. I sure hope that is true!!

Love and hugs,
Erin

Happy Heart News

Marleigh had her follow up with Dr. Ferry (Cardiologist) last Tuesday and we got great news! Her heart is in perfect condition. All the thickening that happened due to the high blood pressure has reversed. So we are thrilled!!
Here is a photo of her EKG.



Here she is with Dr. Jenna Roberts. We are in her office at least once a week and the whole staff at Pacific Ocean Pediatrics has been amazing. We are very lucky to have such talented people looking after her.


We also met with Dr. Kornblum (Neurologist) last week. We talked about her EEG results and he said that after seeing her in person he was suprised her EEG reading wasn't better. The great news is she is not having any seizures. The not so great news is that her EEG is still abnormal so we need to stay on the Zonegran (anti-seizure meds) and keep an eye out for anything that might be a seizure. If everything is still going well in 2-3 months then we'll be admitted to the hospital for a 48 hour video-telemetry EEG. This will give them more data so we can make sure there isn't something like a non-symtematic seizure going on and give her brain a little more time to develop and possibly normalize a little more.

She is continuing to develop motor skills and we are confident she will be doing some intentional rolling soon. She is very close to sitting up on her own and is beginning to play with toys by moving it from right hand to left - which is a milestone. And she is really enjoying her solid food experience, but only the veggies! I keep trying to get her interested in apples and bananas but she's just not that into it. She is great at playing with the spoon and making a great big mess! I love it when she does completely normal things - it is adorable.

EEG Results

2/4/09 UPDATE
Hey there - we got some unnoficial results from the test. It is not bad news but I wouldn't put in great news category either.
We're meeting with Dr. Kornblum (neurologist) on Monday so we'll have more info then but here is a quick summary.
It looks looks about the same as last time, maybe better. There were no seizures, but there are still significant abnormalities that are on both sides.
We don't fully understand what this all means and during our appointment I'm sure we'll talk more about next steps.

The good news is, she is doing really well developmentally. By this I mean, that even though she is behind, there is definite progress week to week. And she has the cutest smile :)
Hugs,
Erin

PREVIOUS MESSAGE
She did really well during the EEG and based on what the technician said she may have a normal reading. We are still a little concerned because she has a slight tremor in her hands and feet. So far no one knows why.

Her blood pressure is still high (120/70) which is 90% for babies. So it has come down significantly but still needs to be lower. The Amlodipine does not seem to do much for her but we are still giving it to her twice a day.

On Feb 9th we have a Nerology appt and on the 10th we have a Cardiology appt. So we'll know a lot more after those visits.

For her 6 month check up (yesterday) she is doing great and only a little bit behind developmentally. She is not sitting up by herself yet or doing much rolling. Her OT says she is progressing and will hit those milestones soon.

Here's a photo of Conrad and Andrea. Even though attaching the leads is a bit traumatic, Marleigh has decided not to hold it against them.

Marleigh's Latest EEG

Cute Laughing Mar

Happy New Year, Happy News

We hope that everyone had a lovely New Years Eve. We spend the evening with our very good freinds, just a few blocks from our house. We had a terrific dinner and played silly board games and even had a little champagne!



On January 13th we gave marleigh her last shot of ACTH. In the movie businesss when you film the last shot of themovie the Martini Shot. We celebrated just long enough to not jinx it. She's been seizure free and we are hoping it stays that way.



Now the plan is to keep an eye on her and potentially start to decrease the other anti-seizure medication. We'll be doing another EEG in a few weeks to see if the ACTH helped to normalize her brain waves. In the meantime we are dealing with her high blood pressure. She is now on Amlodipine 2x a day as of her Wednesday appointment it is finally down to an acceptable level. We have a follow-up appointment with the cardiologist in February. If all goes well, then her heart will start to loose the excess thickness and return to normal.



She is meeting twice a week with infant development specialists. Here is a photo of her with Lindsey, her OT. We are excited because she is doing much better supporting her head and reaching for toys. Just this week she started banging toys on her tray and even rolled from her tummy to her back!! We are soo excited about her progress! And so is she ;)