HAPPY 2017 HOLIDAYS -

Hello!

I cannot believe how time flies lately?!  My girls I used to go through every moment, hour by hour, minute by minute before.  So, here's the current updates:

Olivia - she has just been doing so well.  She makes it a whole day at school, has a short rest after then is off to play with a friend. She is not having her anxiety in public places as much either.  She has had a few headaches a month at school reported and at home about the same.  They seem to come in "clusters" and then go.  I want to blame the weather and I try :)  No other issues at this time.

Abrianna - this girl is amazing!  She has had a few headaches at school and only a couple at home, usually after a long party day or sleepover event.

So, Why are there more headaches at school???  Why do we not have the complaints at home as much?

I really believe it is for 1 reason.  NECK POSITION.

At school, the kids have to look down to do their work.  They will do this for longer periods at a time without moving their heads.  So, then they move the head up and  BAM! Headache.

I personally (not scientifically) believe the neck position does affect the CSF flow and that when the flow is interrupted, that is causing headaches.

Also, too much activity at a time.  So recess, the kids know it is limited and they don't want to give their bodies a break and waste their free time.  So, they plug through it and the heartrate has increased and the overall body has swelled (which is normal with activity for all people) and so how much room do our Chiari kids have to swell at all?  there you go.

Finally, the observation that comes to mind is the illnesses that sneak up on us.  So my kids will have "cluster headaches" and a couple days later show the illness signs of a runny nose, or cough etc.  After the illness symptoms show up....headache disappears and now we are dealing with the illness alone.

Feel free to leave your thoughts on the journal about what you think makes your kids Chiari angry!

Hugs to all our fans :)

Birthdays after surgery

So we are now to our birthdays after surgery!! Woo hoo. It's night and day from our other birthdays. Thank you God and Dr George!! Got my babies back. We got their school pics and for the first time they had bright eyes and real smiles. No dark circles and no semi smiles.

Contact me on the blog if you ever need a friend to just talk to about your journey with chiari!

headaches and solutions for head pain and chiari symptoms complaints

No matter how many times our kids complain about headaches, we have to go through the same list of questions with them.

1. Where does it hurt?
2. How bad is it hurting?
3. When did it start bothering you?

These are my basic three questions that begin the process of how to get them comfortable and functional again. Now, when we started this process, in the begin NJ ING it was new to us. The kids fell into a routine of going to lay in bed a lot and being more "sedentary". We dispensed a lot of Ibuprofen and the kids took cyproheptadine.

Now, first off, I always make sure that if they truly need medicine that theyou get it. So, like I said in the beginning we did daily meds and ibuprofen as needed. Acedomedafin Didn't seem to work as well.

Now, giving daily meds get old real fast. Having chronically ill kids gets old even faster. Learning to cater to it will only "feed" the complaint monster. The thing with kids and even adults (using myself as an example for adults and no I do not have chiari but I battle with my own issues) is that if you are busy you think less about your problems. Does it mean your problems don't exist? No but it does mean that running to the doctor and popping pills all day are temporary solutions that get old fast. Finding the right doctor and medication combo doesn't solve problems just symptoms.


So here's what we do and suggestions for others from a mom point of view opinion.

1. Ask the where, how, and when questions.
2. Develop a plan for how your going to distract from the problem first and try to avoid meds if possible.
3. Don't try just one or two distractions. Come up with new and interesting ideas for those super hard days where your not getting the response you need.

Examples of distractions
computer or phone games
special movie or kids show to lay down until pain passes ...sedentary solution
playdough fun for young children, crochet or 3 models for older kids or adults
board game not computer or puzzle or book puzzle like sudden without the screenlighting
going for a short walk outdoors
Going to sit outside
Drinking a warm drink
making a small snack

For unexpected activities, write a letter and mail it to a friend Or call a friend to come play or go for a drive to get a snow cone or go wash the car. Just something out of the ordinary  (car washing is not ordinary for me lol)

Always have a trick in your bag to pull out. Your biggest enemy for headache control is uncertainty, and lack of Preparation.

Other issues that cause complaining with the chiari is when people and children are bored. Also, have a lack of routine is not good for kids with chronic problems or parents either because it causes anxiety and depression. How the heck does that happen without a schedule? Well let me give you the facts that we went through and where we are now.

4 years ago, my chiari child with the MOST complaints, started with one complaint. I heard it all the time, constantly and I catered to it. "Mom my tummy hurts". Hmm ok I thought maybe constipation. Nope. Maybe a bug. Nope. Maybe indigestion. Nope. Days turned into weeks. I homeschool ed the kids at the time and didn't really have a schedule where we did the same thing every day. We accomplished our schoolwork after, the kids just free played. Looking back, when friends were over, my mom came to visit, we went on a short trip, we were in a store, etc...no complaints really. Some but not always. Except the car she hated the car. Looking back the seat belts were I think putting pressure on her to sit a certain way that affected her neck position causing her stomach pain later diagnosed as abdominal migraines. Anyways, when we were at home she complained to the point it was like a habit. Mom much belly hurts, my legs bother me, my neck hurts, I have no feeling I  my arm, I have a headache. It overwhelmed me and I think I went to the doctor with the kids weekly. My routine I imagined with housewife duties, homeschool fun and going to do things as a fami k you when dad got home was something not possible. I became a prisoner of looking for escape. it felt like the kids were never happy, I was never happy and my husband got the brunt of my bad mood because he got to get away from it daily.
I felt like he didn't understand. He would get home and the kids were instantly cured. It caused me to question myself, question my kids truthfulness on these issues they claimed to have. then one day we were out eating and my husband had to tell my daughter to quit complaining to me. She literally said her belly hurt, her Neck hurt, her head was hurting her etc was a problem. She reported this to me about every five minutes! I remember telling him, "see what she does to me all the time".

There was no break for me at night. My youngest daughter who had started saying she wasn't feeling good that same year I thought she was mimicking her sister. Until she began to wake up in the middle of the night. Screaming. In pain with her head hurting. I remember that my life felt out of control. Our family had no rules really. For us that caused the kids to focus on their problems exasperated by their bordem and my unwillingness to want to do anything for the fun part since any extra time for fun was spent catering to illness.

Fast forward to this year. I am working full time. The kids go to school. We are down to maybe one or two times the get ibuprofen. It is still weekly though.  Since moods are better, we play board games, go outside a lot, have fun finding fun things to do like birthday parties and going places. The headaches went from our primary focus to our last facus. Now we are a year out of surgery, but our distractions have increased our love of learning and for each other. I can say I have a goal of figuring out how some natural remedies will come into play.  Hoping to get off Ibuprofen.  However, it seems like Summer is easier than Winter. I believe vitamin D is a factor in this.

I pray for all our chiari families that visit us from all over the world!!

Love from us~!~

One Year after surgery ....DRAMATIC RESULTS

So, it has been a whole year now after surgery. I have to share these images of my daughter's syringomylia after surgery.  I had lowered my expectations.  The first three pics are BEFORE surgery.  The rest are after surgery.

We had a goal of 50% reduction. We were told it can take years.  I remember clearly crying to Dr. George about how I believed I made a mistake.  My daughter 20hrs after surgery  was on morphine and just "out of it" not herself.  Now, 1 year later.....I definately did not make a mistake!

Before:

Huge Sepatated Syrinxs CSpine

Full Spine View before surgery.  Compelling Syringomyelia

CSpine - biggest syrinx cysts

Now ONE YEAR POST OP;

                                       CSpine 1yr post op.  Reduction of syringomyelia and obvious flow restored

    Lumbar view NO syrinxs

           Thoracic Spine = resolved syringomyelia

Obviously, Pictures are PROOF that for our daughter, she has recovered very well. I bet the next question is going to be about symptoms. Olivia still gets headaches. Not as often and she rarely goes to bed with them.  She has NOT woke up with a headache since her surgery.  She has regained most of the "feeling" she had lost.  She no longer runs with a limp.  She is happy, healthy, and she is a different person for the better after surgery.  

I wanted to post these.  My other daughter does not have to have another MRI this year.  It will be a couple more years before she has to go back. Abrianna has very few bad days now.  She has been our most vocal child with "symptoms".  Her swallowing/chocking from the Chiari Malformation is gone.  Her headaches are just a few times a month, much better than daily. Her body temperature is very  hard to control.  She can overheat easily.  We got her a cooling vest and it does well. Getting used to using the cooling vest has been tricky. In and out play she wears it less than riding bikes and going to a park.  School will be a place that she will be using it often.  Abri didn't have it before the school year.

I believe that we made the correct decision.  Surgery for Chiari Malformation is a treatment and not a cure.  I do feel, that once proven (with CSF flow studies, and obvious MRI imaging of the compact brain), surgery is a must for anyone with Syringomyelia. However for the other child, she did NOT have syrinxs/syringomyelia.  She did however have a lot of symptoms.  She had swallowing issues, stomach pain (we now know that her head pain got so extreme it was from her head ending with abdominal migrane), sudden difficulty feeling her legs, body temperature regulation, headaches daily and often, and just an general overall of "not feeling well".  

While surgery is behind us, I know that we have a way to go with regards to growth factors and what will happen long term. 

I hope this blog is encouraging for the families seeking answers.  My next post will be on how to choose a good surgeon. 

Hugs to all our fans!!!!!

Chiari symptoms

Over the past year, I have had the pleasure of meeting several people who have children with Chiari Malformation.

  

I get asked a lot what were my kid's symptoms.  How did we find out? Especially from people who know nothing about chiari and are just curious.  I know that I have posted symptoms before, but I wanted to re-do/update them.

For my kids here are a list of early onset symptoms.  All of my kids have chiari.

2 of the children were "fussy babies" - one pediatrician used the words "high needs infant".  That is my 5yr old and my 13yr old.  The 13yr old as a baby, we now know that her Chiari has caused her permanent nerve damage.  She no longer feels ill.  She has hypotonia and has a personality that seems to constantly complain.  She cried all the time as a baby and as a young child got into trouble a lot as a younger child in school.  She has esotropia (accomodative) of the eyes and must wear orthodics, due to the way her legs turn. She complained all the time as a younger child about walking, running, doing any type of activity that her legs were "tired" or "hurting" that she now works on a weight issue. Although, this is the first year she has actually been seemingly more active.  I am not sure if the new healthier eating lifestyle we try to do (again not perfect there) is a factor? Also, she is taking vitamins which seem to help as well. She also has hyperflexiblity and an EDS diagnoses from Dr. Rekate in New York.  I was skeptical of this diagnoses until after the third time in her life trying to get her earrings, realizing it has been almost a year and the earrings are still not healing correctly! She can bend her arms and fingers different directions.  She also does not know when she is sick.

2 of the children had severe stomach issues.  Severe pain starting at age 3 for one of them and the other had projectile reflux as a baby.

1 child has Asperger's Syndrome and also had seizures that were outgrown by age 5

2 children have body temperature regulation issues.  1 gets too hot the other too cold.

2 children had headache complaints daily.  The one with the syringomyelia would wake up with headaches at night and every morning.  The other child had headaches that were "typical chiari" where she would bend over and have a headrush headache that would go away in minutes.  Both complain of headaches and point to their foreheads.  The syringo child has daily headaches still, even after decompression.

Only 1 out of all of them complained about neck pain at age 5 A LOT.  That was the one with typical chiari headaches.  I did recently get a call from the school where my just turned 5yr old complained of neck pain after doing a lot of coloring with sidewalk chalk.  I personally believe the position of the neck affects their neck pain.

Nosebleeds in one child that I'm not sure is related but she gets them off and on for periods of time, often followed by stomach pain and headaches withing 48 hrs of onset.

So, for us our list is:

1. Stomach pains
2. Headaches
3. Neck pain
4. Muscle weakness (hypotonia)
5. Body Temperature Regulation
6. Autism/Asperger's Disorder
7. Seizures (early age only)
8. Syringomyelia
9. Periodic complaints of "not feeling well" that come and go
10. Nosebleeds
11.  Sensory issues and problems with behavior (1 child)
12.  Sudden onset of strange symptoms (feeling hot in certain areas on skin, sudden back pain for no reason after movement, having cold skin but hot flashes)  also, saying things like "I know I have an arm but I can't feel it"or "my legs don't want to work"or "my arms are tired"
13.  Throat complaints
14.  To be Continued!...............

Those are all the current issues we have.  Now, how do we handle them?  The youngest children have the most complaints.  The youngest is the one with the constant pain :(  This is what we do:

1. distractions when possible!
2.  extra rest
3.  no activities that will bounce the head around or toys/things that can cause "whiplash".
4.  heating pads and ice packs
5.  fans - personal fans and keeping the house temp cooler than norm (68 in winter and summer)
6.  making sure the school nurses are compliant with the 504 plans (so far we love our nurses and teachers and admin)
7.  focusing on what we CAN not what we Can't do.
8.  not going to the doctor as much anymore...(at this point, we know when it is urgent or not) and the years leading up to the diagnosis finally, we were at the doctor probably 3-4 times a week!
9.  pain mangement - currently, we eat almost no gluten foods, drink extra water, take vitamins, use ibuprofen as needed, benadryl with it for severe headaches (that was our neurologist advice and we have only done that like 3 times) and I make sure we don't let the body temperature rise too much.  At one time we took cyproheptadine daily.  Right now those things work.  Took hot ice packs on feet, lots of pain in head, extra water lay on heating pad on back with fan blowing on them to "pee off" extra fluids to reduce some swelling.  (mom thing, and it seems to work).
10.  There is no right or wrong answer when you are doing your best to help your child.  Education is the key to making the best possible decisions and difference.  Talk to parents, read studies, get educated on nutritional benefits, go see Chiari experts, join a support group...whatever it takes.  Even if you just change a couple things here or there (because it does feel overwhelming and hopeless sometimes), everything you do counts.

Extra hugs and prayers for all the people seeking answers for their loved ones.

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.