almost Christmas!

Getting ready for Christmas. Got all the shopping done. Didn't go overboard. Can't afford it. I had to pay mm you bcbs bill at almost 1500 mo. Yep that's right. And they still refuse to pay for part of the girls surgeries. The surgical assistant was not credit idled with bcbs. How the heck am I supposed to know that. So the grinch named bcbsok aka blue cross blue shield of Oklahoma has taken some joy from me. But I would still go to Dr George. I just wish I would have known on the predetermined benefits and preauthorization they were able to tell me the assistant was going to be so costly. After the assistant refiled bcbsok they knocked the charges down from 8000 per kid to just over 500 for both. Not sure that's a total win. The assistant that was instrumental to the successful surgeries isn't getting paid well enough at all. I'm also still peeved that the doctors building won't validate my parking because we don't have medicaid! Wow huh?

OK time to move on. Do you ever move on past surgery or hospital memories? Nope. Do you replay it over and over. Yep. A war, won that time. Compounded by the watchful spending of the almighty payer. Bcbs of OK.

But really...God pays my bills right? He has paid my debts, all of them. I am remindeed of this over and over.

Now for the girls. Well, we are I  school more than not. Abrianna goes to her nurse multiple times a week. Not always for headaches. Nosebleeds, ranDom overheating and other weirdness that we just call Chiari cause her to be one of the most popular kids in the office!

Olivia does well. She's not as big a complainer as Abrianna. She is very happy in class. Loves going. She does have to rest afterwards or she has issues with leg pain, and headaches. Notice this is the common complaint every night when she gets sleepy for bed. But overall better because she sleeps through the night off drugs and seemingly pain free! She ended up I n MRI after Abrianna because she was waking up screaming with head pain in the early hours of two in the morning.

I thank God that my babies are doing better and for Dr George.  They were on stage at a Christmas program. Minus a small argument with the director in the middle about getting Abrianna a break and water. She drinks a lot. She gets hot easily as well. But got that fixed a and she made it through her fanale! Yay!

yes Olivia wrapped that it's not a ball of trash lol!  Just need some fun snow! Will be posting for Christmas but for now all is still good. The horrible coughing is gone, I think because we are out of that moldy house. And a little ibuprofen as-needed can't complain! Looking forward to a successful year in 2015, without surgery! Oh and still doing gluten free diet. That's been a life changer for us as well. Olivia's eczema is breaking out sone again. We limit acidity fruit and no juice and seems to have cleared up. Las year it was horrible and bleeding. But now it's ok.

Chiari Sensory Integration Disorder and Autism

I have seen several facebook posts regarding Chiari and Autism and Sensory Integration Disorder issues with children.

http://www.lifescript.com/health/a-z/conditions_a-z/conditions/a/asperger_syndrome.aspx                          

First I would like to point out my oldest chiari child.  She was diagnosed with PDD-NOS (aka Pervasive Development Disorder).  Then officially autistic at age 7.  She was non-verbal and had a lot of problems.  She even had unexplained partial complex seizures.  I now believe that her problems were caused from Chiari Malformation that was not diagnosed.  After years of Applied Behavioral Analysis, prayers and medications for seizures, she is off meds, pretty much "normal", with no other symptoms of past issues, except for an Asperger diagnosis.  We absolutely could not be more thrilled at her testimony of success.

Second I would like to point out my next oldest child.  She was a baby that was a screamer.  She seemed to always be in pain.  She had projectile reflux and I would work very hard on perfecting a formula filled of baby formula, karo syrup, and instant mashed potatoes.  I was told she was a high needs baby.  Cholic didn't even describe the non-stop screaming.  I remember about a year old I asked for her to be checked for seizures but her tests were clear.  Beyond that, I had no idea what was wrong.  She saw a doctor to rule out mild cerebal palsy.  She couldn't walk till well over 18months and even then she fell constantly.  Her vision ended up with accomodative esotropia.  Her joints would pop in and out of place and she would cry around the age of 5 of leg pain constantly through the night.  We had no clue what was wrong and the doctors were dismissive as I was a "new mom".  My first two children are only 15 months apart.  I know now, that the reason she seems to have sensory integration issues is due to nerve loss from her Chiari.  This is a mom diagnosis, but worth talking about.  I believe as an infant she had high pressure in her head causing the constant screaming and vomiting.  She almost cannot sleep, even to this day, and she is very clutsy.  She is very smart and capable, but does not seem to know her "spacial areas" around her.  She has issues with walking funny, as her feet over-pronate and it is from her hips.  She literally lifts each hip to walk.  Whenever her Dad touches her shoulder in a store to have her "keep her volume down" she will cry out as if she has been hurt.  We have never understood this.  He will look at me surprised and embarrassed as if everyone around believes he has hurt her.  In fact, it wasn't until a week ago, I put two and two together.  She can get a bruise or a cut and not know it.  Her oldest sister gets mad and hits at her every now and again like kids do and she doesn't freak out.  We have learned that Sarah has deep pressure sensation but not sensation with light touch.  Explaining her squeals when her dad tries to stop her to talk to her and she freaks out.  Then the walking, same thing.  Something has caused her joints to pop in and out (I know my EDS people out there have flags going off about that).  I know that her lack of feeling is probably caused from an old syrinx that has since resolved and has caused her to lose her nerves in the spinal canal.  This is again mother's intution, but I definately believe this to be true.

My next child is the one that started us on this journey.  She began with complaints of severe stomach pains at the age of two and it wasn't until she was 6 last year she was diagnosed with Chiari.  She began to cry daily about neck and head pain.  Then one day her legs wouldn't work.  She wound up in the MRI and that got us to where we are today.  She still struggles with heavy legs every now and then complaints, but less after surgery so far.  Whenever she gets ill, the chiari symptoms are more severe.

My youngest child is the one who has opened my eyes to the lack of feeling due to nerve loss.  She was not able to feel her tongue, her right side of her body, except for deep pressure sensation.  She cried all the time as an infant as well and she had a lot of feeding difficulties for the first 6 weeks of life.  Surgery has made her symptoms much better.  She complains not of headaches as much now, but she is still complaining of the throat burning off and on.  She says it will feel cold like ice and request hot cocoa.  I heard the world is running out of chocolate, so I sure hope surgery gets rid of that symptom soon!

The point is, that I have a theory about chiari brains.  I think they are sometimes herniated down making it more obvious.  I think the chiari zero is real.  I believe that these types of brains are so compacted, that the slightest illness, or swelling the body has throughout the day naturally, causes the normal swelling in the brain and then creates other issues from the brain swelling.  Maybe the brainstem doesn't like being touched by the cerebellum right? So this makes my daughter's legs feel funny.  Perhaps the nerve damage done from lack of space from the skull causes cholic in babies? Perhaps the reflux and other issues are really all from the same thing Chiari.  Then there is Autism.  Perhaps, Autism is related to the size of the brain, and where the brain is the most compressed...therefore causing the different levels on the autism spectrum.  Maybe one day they will measure the different sizes of the different areas of the brain to see if there is any correlation with anything on the spectrum of behavioral and developmental delays.

I'm just throwing mom theories around.  Love to hear some from others on those and what they think too.  Please comment back and tell me your theories.  :)

Big hugs ya'll

    google images

Happy November

Well, we have finally moved into a new house. Again lol. Yes we left the last one due to mold and poor air quality. Here is just one spot of mold in one area of the house. We found black mold also in the home. 

Like magic, coughing got better. Life was cough free until last week :( so kids got stustuffy noses and also got coughs. But these coughs were normal. Not the cough that they wake up gasping for air like theyou can't breathe. That is a nightmare to go through. If my other kids who had not had surgery not coughed the same way, if would have believed it was a surgery thing. So when thsee coughs came and left so quick, it knew it had to be that house we were in. We are half unpacked but, this time it is different.

School private school and homeschool and work all great. Actually, there is a teacher I met recently that was just diagnosed with chiari! Because chiari is so rare right??!! Anyways,we have had an adjustment to our new lives.

See, we left a life to be closer to family. We sold a business, our home, left friends and took a couple months off and went through surgery and now are back to a sense of normal. I can't seem to bring myself to call anything home anymore. If I could ever afford it, I would travel with the kids and see lots of places. I would get an rv and drive around the 48 states and go see landmarks making memories that count. I feel caged up, like we ot another chance to live life and I don't want to roll with the motions. But, I'm hoping to do travel more in a few years.

I've been reading blogs about full time rv families. I'm sure it's not all perfect, but it do think that it would be even more fun to do that with friends. The only reason I'm sharing my crazy travel ddreams are because for so long I've had special needs and sick kids and those days are behind us. The kids symptoms are way less and manageable. My personal autoimmune weirdo flares have gone down as well. 

Birthdays came and went and we see and talk to family daily.  New chapters are ready to be written. Chiari is just a chapter now. A long one but not our main one. :)

I'm thank God every day that he has delivered us. Hugs to our fans out there that love to keep up with our journey. 

Our follow up day!

So we drove to Ft Worth TX and stayed in a hotel last night. We got up ate breakfast and then drove to Austin TX back to see Dr George.

No really what happened is we were supposed to leave Tulsa at noon so that we could arrive to Ft Worth by 5ish. Well we got all the kids out from school by 2 PM and then realized we needed to eat lunch. We loaded the car left for food and then went to get to the highway but I forgot my awesome new tablet to do this blog. So we went back to the house again where we had to go in and out several times for snacks, tablet, chargers, the bathroom!!, yeah...I've done this trip about 5 times now and still can't get it together! Lol you don't even want to know how disorganized we are loading the car. Haha

So we eat and then an hour later bathroom stop again. Then we end up needing more gas and stop again. Sheesh. Finally we were peacefully on our way. I love road trips even around town because it's the only time your kids are legally able to be strapped into a chair where they seem fairly happy for a lengthy time. ;)

Finally made it!

 The only thing that seems to continue to annoy me is that his office is always overbooked with appointments and if you are lucky you won't wait longer than an hour and half to see him. I know that I will wait because we love Dr George. But it still gets old because unlike my car...there's no strapping down your kids in a chair here!

Of course after you wait for hours in the waiting room (it feels that long some times!!) you get checked out by the nurses

Then more waiting and the girls get restless so they find things to do in the room:

So Dr G comes in and he checks out the girls. He had a student doctor with him and I told him we need him to train these guys so they can get to Tulsa so we get awesome care there Dr G style! Anyways we end up talking mostly about Olivia. He wants to re scan her in six months. I asked how long before the syringomyelia is better. He said reality is years. My heart sank. He told us that whatever nerve loss is gone stays gone unless some of the nerves were not dead from the syrinxs. He has told us all this in the past but he reminds you and it is tough to hear each time. Matt and I believe that God has the power so we are believing for a full recovery.

Abrianna tussle headaches are basically cured from the surgery. I can tell you that after experiencing both girls go through horrible coughs that seemed to last forever the headaches were way better....and that was a few weeks after surgery. I have a theory that with my kids they are so crowded that even the slightest fever or illness or getting too hot or running a lot where the body swells inside naturally, their lack of rom seems to cause them to go down hard with bad headaches. Poor Abri's face will swell even with a fever. Dr George said he wouldn't be able to confirm that theory of mine.

All in all both the girls were released to back to normal activities. Yay! Our family has chosen not to allow the trampoline, bouncy houses, jump roping activities because the other neurosurgeons did not allow it for chiari kids. But Dr George said that he didn't care about that. There was a caution used on Olivia that with her hand and leg weakness(which seems less every day, ) that climbing might be an issue to be careful. Also helmets are recommended for bikes scooters etc but that's all kids.

So, right now we feel blessed. We are very fortunate that Olivia's chiari was found so early to get the chance for syringomylia improvement. Abri, bless her heart, she is definitely got many chiari symptoms,  and having the diagnosis makes it better because it's the explanation we need.  God is ultimately in control and for me ( a control freak) that has been a hard lesson to learn.  I have a really hard time letting them go, even to the playground!  But we are so thankful to have such wonderful teachers, administrators, friends, and family all supporting us through this process!

There will be no stopping them now!  They can't even hardly stand still for pictures.  I told their teachers they are probably going to have rambunctious little ones who want to run and climb everything once they realize they can again!  Also, that we spoiled them something terrible...so I have to apologize for that too :)

We are going to continue to post about our children's lives with chiari. This is not over.This blog has been fun and educational for me. It's like writing a science report, and biography at the same time, while able to keep a personal journal in hopes that it does bless someone else in the world with hope for children's chiari malformation. I would like to eventually figure out a way to link other similar blogs and allow others to post hope as well.

Hugs to everyone and thank you so much for all your prayers and support!

BA Eye Site Broken Arrow

I just love this place!  My kids love it.  Perfect, perfect exams and so easy and omg, my teens are WEARING their Glasses!  And my 13yr old even got to do contacts.

Hugs!

Coughing, Throw up, School

So, since July 5th we have been dealing with kids coughing.  All day, all night.  And throw up too from coughing.

Well things got better.  We were only going through a few times a night.  So, we ended up putting the girls in school.  Olivia started Pre-K...sniff.  I was so delighted that she is going.  I didn't cry.  She didn't cry.  It was perfect.  The Principal has Olivia going to the office instead of the rough playtime or recess.  Olivia did ok for a couple days and then began to scream and cry when it came time to go to the office.

Fortunately, the woman at the desk told me she used to teach Pre-K and really does enjoy Olivia a lot.  She is helping Olivia through this time until she is released by Dr. George.  Only a couple more weeks till we go for follow up care.  Other than that though, Olivia loves Pre-K.  After I picked her up from her first day she said it was great.  She told me a crazy story about stuff they did.  I found out later that some of the story was true and some was not true :)  She said she couldn't remember everything so some of it she made up.  Probably started around the part where she had everyone in swimsuits that the school just has and they were running around in the water outside.  I asked her "are you ready to go back tomorrow" she said "why I have already been to Pre-K"!  LOL  Fortunately, we were able to get to the bottom of the day so that when I dropped her off the next day I wasn't asking about everyone in swimsuits!  I did relay the story to her teacher and she just thought it was so funny!!

Now for my ........second grader!  OMG my little first grader is growing up!  Well, she got to class and her two best friends were assigned to her class with her this year!  The whole school was ready to see her.  She knows all the administration, librarians, teachers, nurse...of course the nurse LOL.  Her counselor calls her "her little sunshine".  No matter where she went or who was around, everyone wanted to see her.  It was so wonderful.  She is so confident this year knowing everyone and them knowing her.  The nurse already had her HIP and the counselor had the 504 done.  She is able to go to the media center instead of PE or recess.  It is working out great!

Anyways, the coughing got bad again.  Really really bad.  We ended up at the doctor who has tested them for pertusis.  The doctor also treated them with an antibiotic for that.  I had a lot of faith that antibiotic was going to help and it did!  They went from noses running (first time the noses have run with this odd cough) to just a couple of times a day coughing.  In fact, for the first time in weeks, Olivia slept through the night without coughing!

We are also suspicious of our home we live in (rental right now) that maybe we might need to move.  I don't know what to think.  Three days of pre-K and school (two different buildings) with them both getting sick exact same time doesn't sound like it was from school.  Please pray that we can get rid of this cough which has taken over our lives!

Abri's first week back she did come home with a headache a couple of times, but she has yet to go to the nurse.  I think the excitement, the newness and longer day (I would let her rest at home some) was a big factor.  Olivia has not complained about anything except being hungry. :)

So far, I'm still thankful we did surgery and they have greatly improved.

:)

I little over a month later

So, when you have restrictions for playing......it's a LONG month.  We did 4th July fireworks...that looked something like:

Then the next day the coughing started.  Some coughing virus.  Of course without getting into a big debate on vaccinations, I will say all of my kids have had Croup cough before and now they have a vaccine for it, so you would think you would not need a vaccine for a cough they have all been confirmed to have had in the past.  So somehow, we have either a new strain or we have something totally similar and the doctors are wrong.  So, it started with my Oldest before we left for surgery and still coughing some 8weeks later!  She ended up on an inhaler and got Thrush in her mouth from the inhaler!  So, we are trying not to drink after each other but especially her!  

Then we ended up one by one (kids only so far) with the croup and they are all now coughing!~  

Coughing was so hard on Abrianna.  She would throw up after trying to get her breath.  Several scary nights where she just couldn't seem to catch her breath!  But now, Olivia is doing the coughing till she throws up, but her throat isn't closing up like Abrianna's was.  Abri, ended up on a nebulizer for a bit.  I think more psychological for her than helpful, but it did seem to calm down the attacks some.  

So, we are all just trying to keep moving forward.  We are doing a lot of arts and crafts, painting and computer stuff.  The kids really don't like TV much and almost refuse to watch it.  Books are a favorite and we are getting ready to kick off our homeschooling year again.  All the kids decided to go back to homeschooling.  They begged to go back.  I have to say I think it is obvious to us they learn much more at home, at least in our family.  Public school was a nice break for me last year, but they didn't learn anything.

Anyways.......enough of that ranting LOL.

So, we have been housebound a lot with a stupid throw-up cough, but we did venture out to Sarah's first co-op day yesterday and it was so nice to meet everyone there.

It occurred to me I have not posted pics on the girl's "zippers" since being back so here is the month later view - 

 Olivia

 Olivia

 Olivia - look close you can see the stitches still only a few at the very bottom. They will probably be gone in another week or so. 

Abrianna (she has a birthmark so that is why it is red)

 Abrianna no stitches

At least we don't have any restrictions on food!  

I'll post some updates next month after our follow up with Dr. George!  

10 days post op and fireworks!

So, last night was very fun.  We went and saw fireworks.  Lawn chairs, blankets, water, snacks, sparklers and bug spray!  A few tunes off the cell phone radio all equals good times.

    2014


So, all the kids were having a good time.  The wind made it a little difficult to light the sparklers and when one was going well, the others had to be lit from that one.  So, finally at one point I found myself video taping the fun.  However, upon review, its all in the dark on a cell phone so its just audio mostly LOL.

The fireworks started Olivia was very excited.  She sat down in her mini lawnchair and yelled out "wheeew" and "oh yeah" and then she stood up and clapped her hands as if the whole event was over and picked up her chair and announced she was ready to go!  :)  A few times I noticed both the littles covering their ears, which is odd since we were a few miles from the show!

Well, after washing hair and bug spray off, the incisions look fabulous.  Both girls are getting faster I have noticed attempts to run again.  Makes me nervous though!~

This post is a short little update.  Our fireworks were a week early for some reason - but we may venture out again on the 4th.  I'll keep posting on the progress, but so far so good!

Discharged from the hospital in three days and finally home!

So the morning of day three I thought we would for sure be there another night in the hospital.  Olivia woke up again scared to get out of bed then her right leg was hurting.  PT came back and had her walking well within 20 mins.  We decided to go get lunch in the cafeteria after we played in the playroom for a bit.  By the time we got back upstairs to our rooms we were talking to the nurse about possibly discharging and staying at RMH for one night.  Dr. George agreed and we did.

John one of our nurses was surprised they were leaving so soon and sat down in disbelief!

Olivia hated the smell of the alcohol wipes when getting out her IV!

When we left the hospital the girls were very sensative still (of course) in their neck muscles when the car would hit a bump.  I thought "oh boy this is gonna be a fun ride home".  However, the next day when we started traveling home both girls did fine.  No complaints!  So, that extra night was huge.

We got home very late but our other kids were so happy to see us.  It felt so good to be back in my own bed without all the interuptions hospital life has to offer.

So, now, it has me thinking that God does not plan for our testimony to stop here.  I have a goal of posting on Chiari and encouraging other moms through the journey when they contact me.  I can't say this was the easiest thing to do ever.  Even though, reading through it, doesn't seem too bad.  Emotionally, it is such a difficult thing.  Your sweet baby(s) going through any surgery would be emotional for any parent.  However, I had to fully and totally put my trust in God.  I put both children in his hands and they came through with no issues.

Today marks one week since surgery.  Both girls are moving well.  No running, walking better.  Still not looking up or down with their necks.  The incisions are sometimes itchy but look fantastic.  They are playing well and not overly tired.  I think I have given them a handful of doses of tylenol but not much.  Neither girl has complained of a headache even one time!  Olivia continues to be excited about feeling things with her hands.  Apparently, she had lost feeling in the tongue, the fingers and outside of her skin.  Her face she is actually bothered by her hair touching it now!  So, I think she had lost more feeling than she knew.

A Neurosurgeon we saw once told me a patient told him that syringomyelia was like cooking a frog.  You put a frog in cold water and heat the water up to cook them.  It is a gradual change and that is why they don't jump out of the pot.  They don't notice.  This holds true for syrinxs.  I can say that over time, Olivia lost feeling so gradually, she didn't complain or tend to notice.  So, I praise God that he revealed this to us and how he is getting her back to normal so well.  Also, the surgery seems to have calmed Olivia down some.  Before she could almost never sit still.  Now, she seems less agitated.  I think the constant tingling was causing her to constantly move.  She could not even sit still to eat!  Also, her appetite has gone up.  I'm sure having feeling in her tongue again has helped!

Anyways, that is my little update for now.  Our next big appointment is in September with Dr. George to evaluate how they are doing and then I'm sure he will be scheduling Olivia's next spinal MRI to look at the syrinxs.  I think...no I know that they are improving already.  God's healed her and I also have that "gut" mama instinct.

I sure hope that if your reading this blog and you are getting ready to go through this or are making decisions on the surgery, that you will be encouraged.

Chiari Malformation and Syringomyelia surgery day and day after

So, those that have done this you'll remember some of the things.

For the ones wanting to know what it is like.....well, here it is.

We had to arrive to the pre-operative check-in at 6am.  I thought many times the night before about not doing it.  I woke up every hour completely stressed out.  The time came and we arrived at the hospital.  The walk to the hospital was so terrible, because I felt really bad about what was going to happen to them.  A mom's guilt that while I know it needs to be done, I can't help but wonder about running away from it.  But with Chiari, there's no where to run.

The night before arrival I had to bath the girls with special soap and wipes.  I also had to braid their hair.  My heart was heavy as I prepared them.  One day when they read this story, I want them to know the truth is if I could have figured out something better I would have.

So, we checked in and the girls were pretty happy.  Olivia was worried all the night before about the "mask" they have to wear to get their anasthesia gas.  She didn't want a "mask" because after having 4 mri's (a whole other rant about why can't they just do 2 instead of 4), she hates the process!

I was so anxious that when the people had something wrong on my paperwork, I bit their heads off!  I also was annoyed that my husband after 19years still can't read my mind.  My head was just spinning with thoughts and emotions.

Then they took us back to the room and they had the girls wear a special warmer suit that increases their body temperature so that it activates the immune system.  

Then afterwards they gave Olivia some versed so that they could take her back to the OR.  Unlike the MRI room you have to let them take your child.  But they did it with the drug and she wasn't afraid.  Here is me holding her and it is the worst pic of me but this post is the unedited version :)

Yes, I was crying my eyes out here, but holding back what I could as the hands went out and they took her away.  I found it hard to breathe.

The wait was long but then they came for Abri and Olivia was done and we went to see her in recovery.  

She was perfect.  Then I lost it!  I was such a mess.  But her nurse was wonderful. Told me details and had her nodded yes and no.  She was awake but on drugs.  That felt so good to have her responsive. Before I knew it the girls were in their own rooms they looked like this 

And here's what I looked like right after they were in their rooms.

The first night was no picnic for Abri.  She is naturally more sensitive to everything.  But she did good except she was admit to get her catheter out.  Here I would think her head would be the issue but no it was her pee.  She was so uncomfortable that they took her cath out. She was so scared it would hurt to pee she fought going on the potty for 45 ins to an hour! I was with Olivia and she was so comfortable she just slept all night.  I went to help with Abri. She was talking so much and so overwhelmed but she was herself. I asked her "what would your teacher do"? She replied "call you"! After a while the nurses left and me and Abri were in this situation of needing to pee. If she didn't go within 6 hrs of the catheter coming out she would have to get another one. So, I tried everything we all did. Finally, I said "let's go you pee in that pot right now missy" and she did! She immediately relaxed and went into bed and got me d's and went to sleep.

Matthew and I switched back to me with Olivia him with Abri. Olivia never roused much but she stayed on the morphine but she was in pain and needed it. I could have slept (as well as you can sleep in a hospital) but I couldn't sleep. I was very overwhelmed feeling regret like I made the wrong decision. 

Next morning Abri comes wheeling in the room to visit us!

She was smiling and upset because she wanted to walk around. She had been walking but wasn't steady on her feet. Basically, she was only in bed for a matter of hours before she was walking after a brain decompression surgery!

Olivia wasn't doing as well, but Dr George had to do more to her. I was feeling very sad and worried about Olivia and Dr George came to check on her and said to me "how many hours has she been out of surgery?" I said "less than 24". He said give it more time she was doing great. The day went on and Olivia was able to get off morphine a little more each time.  Other drugs were substituted. Her eyes perked up and they took her catheter out and then I got to hold her.

And I'm never letting go!!!

That evening I would hold her for hours turning her slowly moving her slowly and just loving on her. 

This is 3am. Bright camera flash!

Then the next morning Olivia woke up and seemed good but she was very scared about moving out of bed. She had used the potty a few times but then stood to use it and had a leg pain and we had a short lived setback. So, I couldn't do anything to convince her to stand. I asked for physical therapy.  There were two of them and they came and talked to her. Olivia refused to cooperate and then they had this magic puzzle. The puzzle started on her bed table then the table scooted further away then they placed the pieces all over the room and I watch Olivia bend and go up on her toes and move to Put this puzzle together as fast as she could!

We went from our room to Abri's room! Then she just crawled up on the bed like normal. Thank you PT! We then saw our friend Morgan who we met on Facebook and she also had her surgery done by Dr George. (I posted a pic of her on the previous post.) She was coming to say goodbye because she was discharged and Dr George was also there discharging her and coming to see our girls! We talked to Dr George briefly and he is thinking a couple more days just to ensure they are doing good. He wants us to stay at Ronald McDonald House for a couple more days to make sure they are good before we drive back home. 

Here's a pic of all 3 girls. Cuties! 

The rest of the day has been coordinating new mess and right now Abri is just on Tylenol.  Olivia is still on a pain med but should transition to Tylenol tomorrow or the next day.

Abri has been so busy. She hasn't let any of this slow her down. If she got bored she would go hang out with the nurses. We didn't have one bad nurse. All of them are amazing. Abri painted, played video games on the wii, walked around visiting other rooms, hung out with Morgann, checked on Olivia, notified us instantly if she had a problem or someone else did, went to the playroom, made sure everything got wiped down, went to the familyresource library for movies and a book, whew.....that girl didn't let any of this slow her for a second!  

It has been long, hard, sad, happy, scary, but looks like it's been worth it. Vomiting is common with these surgeries due to the area of the brain being manipulated. However, Abri threw up once we think from too much medicine at once on an empty belly, Olivia threw up first day a few times but not badly (no excessive heaving). They did a great job with different medications for nausea and we had no issues really. Abri didn't have duraplasty to but Olivia did. Dr. George harvested Olivia's own tissue from under her scalp so that's why hers incision is a little longer. 

So, what does the back of their heads look like now? 

And their hair still looks good!

We are looking forward to night 3 now as we are going to get good rest. And the girls? They are crawling all over the room and playing with playdough. You wouldn't ever know it's only been 48 hours.

Praise our savior Jesus Christ!