Hair

I have been so addicted to doing Alexa's hair. It's finally is long enough to put up in braids and other cool styles. We tried this one Sunday for church. Her hair is still fine so by the end of church it was falling out, but it was fun while it lasted! This is her serious face

This is her happy face

Dear diary

Since I turn my blog into books I wanted to write a few things down that have happened lately.  Lexie is in ballet, she loves it.  She really is pretty natural at it too.  It makes me excited to see her on "so you think you can dance" in 15 years or so.  She also really loves art.  My girl just needs to start singing and we're set.  I look at her now and know she is going to be a strong leader, and I can't wait to watch her grow into a young woman.  She is a social butterfly and is always wanting to have play dates, most of her friends are already in school, so we bug the few friends we have her age to play all the time! 

Madilynn is doing good.  She rolled over yesterday for the first time, and she hasn't done it since.  She doesn't like being there once she rolls over and doesn't roll back.  She is smiling and cooing a lot and everything she has in her hands goes to her mouth.  She is kinda over her binkie except when she sleeps and is still in bed with us.  Can't wait to have her in her own bed.  This way is good for now and everyone is sleeping well.  She doesn't love nursing anymore and will mostly only nurse when she is going to sleep.  We've just been adding a bottle here and there to make sure she gets enough to eat.  We love our little girls and are happy to be their parents!

Not the best hair dresser!

When I came home Alex gave me a gift..........

Alexa's hair, she cut it herself. I can't tell where she cut it from, so I guess that makes her a pretty good hairdresser after all! The next day we had to take her scissors way for a week cause she cut her new PJ's too.

Hospital visitors

It was so nice to have Alex and Lexie come visit us while we were in Sacramento at the Hospital.

While they were there her monitors started beeping, 82 is not good for her blood O2 to be.....

oh wait, it's cause it's in her mouth......all is good!

Home

Well we were sent to Children's Hosp in Oakland to see Dr. Sun who is a neurosurgeon to look and Madilynns MRI. They wouldn't let me drive her so we had to take an ambulance all the way. I didn't want to let her go alone so I rode with them and left my car in Sacramento. When we got there they got the MRI together and let Dr. Sun take a look at the MRI, he didn't feel the need to operate but said we'd talk Wednesday morning in his office. I was so relieved. The next morning I went to talk to him and he said not only is the opening of her skull small, but it has a little piece of bone sticking out, so her brain stem/spinal cord isn't straight and it's cramped into a small opening. On the MRI the cord should be all grey, but hers had a little bit of white and that is the softening of the cord. He didn't feel it necessary to operate because as of now she is not showing any signs of the cord damage. He wants us to go back for another MRI in 4-6 weeks unless she starts showing those signs then we'll get in sooner. Some kids as they grow the opening grows as well and it works itself out. After we talked the let us go at the exact time my parents and Lexie arrived to pick us up. We drove back to Sacramento to get my car and then home. I brought a gift home for the hospital, a cough and fever......thanks alot!! I'm just excited to be home and hope we don't have to go back too soon. Thanks for all your thoughts and prayers, we have amazing friends and family!!! Love you all!!

Update

Well Our specialist didn't like what he saw from Madilynns MRI so he ordered a CAT scan which she did amazing on!! She just sat there and didn't move at all! That information is going back to our specialist who is teaming up with a neurosurgeon and they will let us know tomorrow what to expect. Surgery or home. We'll take all the prayers you have to offer. Our Dr. said not to worry until he tells me to worry, but then move us to the ICU....too many mixed messages!! We'll keep you posted!!

Not much of a SLEEP study!

We had another sleep study last night, only problem is Madilynn didn't sleep at all. She was up all night, sleeping from 1am to 3.....that was it!!! Not the best sleep study. I hope they got what they needed so we can go home today!!!!!

Shower time.

I got to take a shower today, aaahhhh it felt a.maz.ing!!!!! When I got back one of our swell nurses gave Madilynn a bath and she loved it!!!!! There is still a lot of gunk in her hair but it's coming out each time it's washed!!

Recovery Room

This is what I found when i finally got to see Madilynn after her MRI. It took a few hours for her to be totally back to normal, her eyelids were soooo heavy!!

As I've been sitting her with my angel after her MRI, I'm thinking about all the little sweethearts her in this pediatrics wing of the hospital and thinking how lucky I am.  I can't imagine the pain these families know, and I hope I never do.  It's sad to think of these little ones suffering in any way.  I am grateful for my girls and my family and hope they know all of my love!

Goodbye cords, Hello MRI

Good news is she got her cords off from the EMU (brain activity test), bad news is they took her away for her MRI. I don't know what is up with me today but the thought of them taking her away and putting her to sleep put me into a crying frenzy! I know there are always risks with putting a baby under so I am going on 4 hours sleep and i can't stop crying! It's going to be 3 hours and it is going sooooo slow. There is a prayer in my heart constantly and I can't wait til it's over. I know it is necessary and there will be tons of good information from all this, and i hope it rules out future problems......but I'm loosing it! Stay strong, stay strong!!! Here are some pictures of her after they took all that junk off her and then they put her IV in. She did great and only cried for a little while. She is such a big girl already, strong and ready for whatever life dishes out to her. It's amazing that this experience has really made me feel grateful!  Seeing her hooked up to all that stuff made me think how happy I am that she doesn't have something life threatening.  There are families here who can't say that, and my heart aches for them.  I am impressed with the nurses who care for these sweet spirits and am grateful for them!  Thank you all for your prayers and happy thoughts on our behalf, it does really help!!! 

s

we made it!

Well we made it to Sacramento and little Madilynn has been hooked up to about 15 leads, she cried most of the time, but she was also really tired. She had a nap and is feeling much better. We're here for the long haul.....hopefully we'll be on our way home by this time tomorrow!!

Our Medical world

Lots of Little people have many issues that they need operations for to help with, for that reason LP's see many specialists!!! We saw our first of many today! It all started 2 weeks ago when we went in for our normal wellness appointment and they measured Maddies head. It was big even for the LP chart. We came in the next week and had it measured again, 4 more cm in 1 week....wow. Because of the rapid growth our pediatrician was worried about hydrocephalus. She sent us for an ultrasound. The following Tue we went in for the results....after waiting 2 hours they said our Dr. had an emergency and to come back.....we came back and waited another hour and a half to finally talk to her and find out Madilynn's ventricles were normal so that rules out hydrocephalus. There still was fluid around the brain so she referred us to a neurologist (in Sacramento). We saw him today (great Dr.....very smart and a specialist in dwarfism) and after waiting 2 hours to see him for 10 minutes (seriously what is it with Dr's???) he has ordered an MRI and sleep studies. He did say the extra fluid is very common with achons (which I knew from my own research) and that she looks healthy and is progressing on schedule!! I think the MRI and sleep study will be this week (Fri) and that should rule out several possible problems common with achon. Next on our list of specialist will be the orthosurgeon and the ENT.....we'll keep you posted!!!

Sister

I wanted to take some pictures of the girls after church today with their matching outfits and everything was fine.....

until this picture, Madilynn is looking scared...........

and then it's over!!

I love my girls!!!!!!!!!

Bath Time

Madilynn took her first bath in the tub today (not the sink) with Lexie. It was so cute.

Madilynn was in there so long her toes are wrinkled.......

She played with her little mirror for a bit ......

Then she was over it and ready for bed (she turns on a dime!!!)

Then Lexie got the tub to herself!

Dr. Laufer

Alex is coming to a billboard near you (if you live in Chico) Can't wait to see this big picture looking down at me!