Marleigh is in pre-school!

Can you believe how big Marleigh has gotten!!
She is doing great and loving her preschool class.

 

May The Sun Always Be At Your Back

We have been in Chicago since November and we are starting to feel a bit settled in. We did visit LA recently and it was soo much fun for Marleigh and Dylan.


Plus Marleigh got to see her favorite Pediatric Nerologist, Dr. Kornblum. He even reduced her dose of Zonegran and I suspect, if things continue to go well, we may get off it completely in the near future. We are still watching her for development issues and possible seizures but things are going great right now so we are really enjoying it.

We went on a few outings with our old friends Elizabeth and Carrie and their kiddies. Here we are at the fountain in the Rose Garden outside of the Science Center.


It was too much fun!


She is such a Sunny baby. Always smiling and happy - her laugh could thaw an ice cube. And Dylan just adores her too.


Marleigh just started her speech therapy last month and she's doing great. We hope to get her physical therapist coming soon, although she does seem to be better with her balance lately. So maybe she won't need it!

Lots of love to you all and Happy Mother's Day!
xoxo
-Erin

Florida in February

Here we are in Florida during one of the coldest February's on record - this was the only day we didn't need jackets! As you can see, Marleigh's hair has finally gotten long enough to put in pigtails. I think it looks fantastically cute!

She is doing great! Still no seizures and lots of smiles. We should be getting some speech therapy soon but there has been a bit of a delay with the scheduling. She has had a sudden interest in saying new words and repeating after me. She says "Mommy" now, instead of only saying "Daddy". And when she wants something she'll point at it or pull the whole box of cheerios out and bring them to me if she's feeling snacky.

She loves to say "Hello" to people. Not just "Hi" but the whole word and it is as clear as a bell. And she's being a great younger sister. She just adores Dylan and thankfully the feeling is mutual.

We took a day to go up to Disneyland while we were there and it was so cold that I should have brought our winter coats. We had them at my Mom's house but despite reading the weather report I still somehow thought it wouldn't be that cold and consciously left them hanging in the closet. I was wrong so we were a bit chilly even wearing every layer we brought in the car.

It was so fun to see how similar and different Disneyland is to Disneyworld. Both the kids loved It's a Small World and I think that is exactly the same at both places.

Doesn't she have the cutest eyes? Even in this low res photo taken at the Panera Bread at dinner, you can see those beautiful lashes.

We recently went to the Field Museum here in Chicago and it was very cool. Dylan's favorite part was seeing the most complete skeleton of a T-Rex (this one is named Sue for the person who uncovered the fossils in North America but its sex is unknown). Marleigh's favorite part was chasing after Dylan.

We are taking a trip to LA in April and Marleigh will see Dr. Kornblum so I'll have to fill you in on how her appointment goes. Hope all is well with you and yours!

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