Today turned into the day I have dreaded for the last 3 months.  We have been trying so hard for the last 3 weeks to keep Meghan healthy for surgery.  We have not taken her out of the house for over 2 weeks, she's been on a vitamin for the last 3 weeks and she just got off an antibiotic one week ago.  We have all been washing our hands and sanitizing everything like crazy.  But, as Meghans luck would have it, she woke up ill last night at 11pm.  The poor girl cried most of the night and developed a fever at 4am.  She had her pre op this morning at 10am.  Before her doctor would clear her for surgery, he wanted to test her for the flu, strept and do a WBC blood test.  I thought she just had an ear infection.  Her ears turned out perfectly fine.  Meghans doctor called this afternoon to tell us she tested positive for Influenza A and that she's contagious for the next 5 days and surgery had to be postponed.  We do not know when surgery will be rescheduled for as of yet.  Hopefully we will find out Wednesday or Thursday.  I have told myself many times, and people constantly tell me that everything happens for a reason.  I am really struggling trying to figure out why all of this happens to my little girl.  I know it could be so much worse, but she just can't seem to catch a break from being sick.  It seems like the more I try to keep her healthy, the more she gets sick.  I would give anything to take this all away for her. 

I have to say a HUGE thank you to Jeff's dad.  He has been staying with us for the last 5 days and he has taken care of most of the "to do" items on our list.  We even got him to paint Meghan's room for her.  It turned out great!!! 

This year has been such a rollercoaster ride for us.  We've had many ups and downs.  I will never forget this year, but I am so ready to put 2012 behind us and move on to 2013 to see what this year has in store for us.  I have to believe it can only get better.  Through it all, we couldn't keep going without the love and support of our amazing family and friends - so thank you all for the many thoughts, prayers, emails, phone calls, texts.  We hope you all have a very blessed New Year!!

Merry Christmas!

We would like to wish you all a very Merry Christmas from our family to yours!  We hope you all remember the reason for this day, and take time to remember Jesus' birthday.  Happy Birthday Jesus!

Here are some pictures taken of the kids throughout the holiday get togethers.  Enjoy!

This is one of my favorite pictures of the kids!  It's like they're saying "alright!  we got one by mom...high five!!" 

Meghan (18 months), Lucas (7 years) and Colin (15 years)
Christmas 2012

They both look REAL thrilled ;)

Outta my way mom...I'm headed towards the deserts!!!

Meghan's new cupcake kitchen from Grandma Marcia.  This is just her size!!!

:) 

Some of you have tried leaving comments on the blogs.  I am not sure why you aren't able to leave comments as I have the blog set that anyone can comment.  But for some reason, you have to create a username and password to leave a comment.  All you need to do is type your comment, hit publish and then you will be asked to create a username and password.  Once you do that, your comment will post.  For those of you with a smart phone, I believe you can just use your gmail ID and password.  Or, if you prefer not to create a username/password, type your comment, then under the comment box, choose "anonymous" from the drop down box.

Merry Christmas everyone!!!

The countdown is on and Meghan will be having surgery in 13 days.  Wow.  13 days.  I can remember the time where we had 3 months to go.  The surgery date is approaching too quickly.  I find myself many times lately second guessing myself if surgery is necessary.  Then I remember she has a secondary condition, syrinx (syringomyelia), and blocked CSF flow - along with other symptoms -  and I come back to reality and remember it is necessary.  I hope and pray that Meghan comes out of surgery as the same cuddly, helpful, giggly little girl that went into surgery.

In this season of giving, I wanted to share a couple places that are near and dear to our hearts.  The first is Childrens Hospital.  Obviously, this is very dear to us as this is the place that finally found what was causing Meghan to have a rough life.  If you would like to donate to Childrens Hospital, please go to: https://giving.childrensmn.org/donate

The second is called Pillowcases for Patients.  I urge you to go to the facebook page, Pillowcases for Patients, to see first hand the amazing person who runs Pillowcases for Patients.  Her name is Erin Kirby and she is just 15 years old.  She was involved in a car accident in 2011, causing her a TBI.  She was hospitalized and knows first hand how much being hospitalized stinks.  She wants to brighten the days of young patients in the hospital, so she makes personalized pillowcases.  She relies solely on donations.  She is donating a pillowcase to Meghan, so Meghan will have her very own Dora the Explorer pillowcase.  If you would like to donate, please send your donations to:  Pillowcases for Patients- PO Box 346- Oregon City, OR 97045.  I think this young lady is just incredible and the world could surely use more people like her!

Update on Meghan.  Meghan and I were very sad to have to miss Jeff's family Christmas last Saturday in Iowa.  We were looking forward to getting out of the house for the day.  Meghan wasn't 100% yet so we decided it was best if I stayed home with her while the boys went to Iowa as planned.  They had a great time.  Hopefully we'll be able to join everyone next year again.  On Wednesday, Meghan had her last physical therapy session until she is well enough from surgery to continue sessions again.   I love those girls. It was a tearful session as they have become family to us.  They are going to stop over to visit Meghan after we get home, and read her a book or two.  I received the MRI images, radiologist reports and the Neurosurgeon notes from appointments from July and October in the mail today.  I find it very interesting to read all of the reports and learn the medical language.  I am learning so much as we go through this adventure.  I didn't find too many surprising news that we weren't made aware of, but her radiologist report from the MRI in October stated the brain herniation extends down to mid-level of the  C2 vertebrae.  The report from July's MRI stated top of C1 vertebrae, so the herniation did worsen from July to October.  Because it extends to the 2nd vertebrae I think Meghan will have her top 2 vertebrae's removed, but won't know foresure until post surgery.  As soon as I can figure out how to do this, I will post an MRI picture of Meghan's Chiari and post a picture of a "normal" brain.  Then you will be able to visualize what Chiari Malformation is.  I took Meghan back to the doctor on Thursday to recheck her ears and throat.  She still digs in her ears often, and she has decided since Wednesday not to eat very well.  She will eat a few bites at each meal, but thats it.  Her ears and throat were clear so atleast I know the antibiotic is working.  As for not eatting, we will have to keep an eye on that.

Please keep Meghan in your thoughts and prayers in these days leading up to surgery.  We are saying many prayers that she stays healthy enough for surgery.   

Have a wonderful weekend!

TGIF!

TGIF!!  Friday is finally here!  It has been a very busy week, so I am very much looking forward to this weekend.  Although we have a busy weekend planned as well, but atleast we all get a break from working.

Well, little Meggers has had somewhat of a rough week.  It started on Tuesday evening when we were on our way to Mankato to pick up our shirt order.  Meghan started getting restless in her seat.  I went to the back seat to try to comfort her, but that did not help.  Then, she started throwing up.  We quickly picked up our order and headed home.  After her episode, she clonked out and slept til we got home.  I gave her a bath and Jeff cleaned the car seat.  After her bath I gave her some toast and she didn't have anymore issues.  Late Wednesday afternoon she developed a fever, but nothing else.  She was very clingy by the end of the night.  Thursday morning she woke up crying so I waited 15 minutes to check her temp was 101.9 so Jeff took her to the doctor.  Both of her ears were red and inflamed, along with her throat being red, so her Dr. put her on antibiotics and is treating her for ear infection.  She has had many coughing spells at night this week as well.  I thought she'd be doing better today, but she still has a temp of 100.5 and has no desire to play or be away from mom.  She is congested in her chest.  I sure wish she'd get a break soon.  I hope she turns the corner soon as we are supposed to leave for Iowa tomorrow morning for Jeff's family Christmas. 

I hope everyone is staying healthy and has a wonderful weekend!

Happy 18 month birthday!

Meghan celebrated her 18 month birthday yesterday.  I just can't believe how fast time is going!  The lucky girl got to celebrate by going to the doctor for her 18 month check up.  I was a little shocked when she got weighed and found out she lost weight.  Not much, but for Meghan, every ounce matters.  Two weeks ago, she was 18.2 - yesterday she weighed in at 17.15 pounds.  She measured 28.25 inches.  UGH.  Yesterday was the first time I felt that her primary care doctor was concerned about her weight and height.  Especially with her losing a little weight.  He referred us to see an Endocrinologist.  One of the areas they deal with is growth and development and to see why a child isn't growing.  Her doctor thinks she might possibly have a growth hormone deficiency.  We will hopefully have a consult with an Endocrinologist while she's recovering in the hospital in January.  He also sent us to the lab after her appointment yesterday to take blood to check for any thyroid problems.  I haven't heard back on the results yet.  He also put Meghan on a liquid daily vitamin.  Meghan has a weak immune system and seems to catch any bug that goes around, so we are hoping this will help with that.  I do not know how Meghan can stomach the vitamin as I can hardly stand giving it to her :/  ISH.

We are all headed to Mankato tonight to pick up the shirt order!!  I am so excited to see the finished product!!! 

We got snow over the weekend - about 4 or 5 inches - and Meghan thinks it's the coolest thing!  She gets very excited when she looks out the window at the pretty snow :)  She watched her big brother build a snow fort and was mezmerized.

So long, Mr. Flu bug!

Whew!  I am so glad the flu bug has officially left our house (knock on wood!).  Meghan woke up this past Friday morning at 12:30am vomiting.  For a while, she was vomiting every 45 minutes.  She wasn't running a fever.  We remembered commenting throughout the day on Thursday on how Meghan just wasn't acting like herself.  She would zone out at times and she was really mellow and to herself.  So when she woke up vomiting, a red flag went up and we started to worry these were symptoms of a shunt failure.  It's been 8 months since Meghan has had her shunt and we haven't had any issues with her shunt yet (again, knock on wood!), so we aren't sure how Meghan will present symptoms when she does have a shunt failure.  We are just going on the symtpoms we were told to go by...consistent vomiting, no fever, change in personality, fatigue.  These were all things we noticed with Meghan on Thursday, and now the vomiting.  We decided to call Childrens to talk to a Neurosurgeon.  Jeff called while I tended to Meghan.  We got very lucky and Meghan's neurosurgeon happened to be the on call doctor when we called, so Jeff got to talk to him personally.  Jeff described her symptoms and he told us she will probably need to be scanned based on her symptoms, or we can wait it out a few hours to see if it is just a bug.  Since this was 3:30am and neither one of us had really gotten any sleep at this point, we decided to wait it out a couple hours until Luke went off to school.  Luckily, by 5:45am, she had finally fallen asleep and we didn't have any issues after that so we did not need to take Meghan in for any scans.  PHEW!  Jeff was supposed to leave with a group of guys at 7am on Friday morning to go on a hunting trip, but he decided he couldn't leave not knowing it wasn't a shunt failure.  We are very thankful for understanding friends and relatives!  Little Miss Meghan was supposed to leave on the trip with her dad and he was going to drop Meghan off with Grandma Linda for the weekend so I could paint her bedroom, but, plans changed and Mom and Meghan had a mother daughter bonding weekend on the couch.  After Meghan got sick, I got sick as well :)  Thank you to all who offered to come help, but, with the holidays approaching, I didn't want to get anyone else sick.  The offers were definitely appreciated, though!  We are finally feeling better today!

Jeff took Meghan in for a weight check last Thursday.  She weighs 18.2 and is 29 inches long.  Just so tiny.

Meghan has PT and OT Wednesday morning.  I am excited as I will get to sit in with this session!  I don't usually sit in with the sessions as the girls do their sessions with Meghan upstairs while I tend to the daycare kids downstairs.  But, Jeff will be home and he will hang out with the daycare kids so I can sit in with Meghan. 

We hope everyone is staying healthy!

What a day :/

I am so proud of Meghan with the progress she has made since her shunt was put in.  She has come such a long ways and has accomplished so much.  But, she has good days and bad days.  Today was a rough one.  One of Meghan's biggest issue is her balance when walking.  She's been walking for almost a month now, but she falls often.  This is because her CSF flow is blocked and the CSF can't carry the correct balance and coordination communication from the brain to the rest of her body because it's blocked.  Everytime she falls my heart aches for her more and more.  She gets so frustrated.  She has overall low muscle tone, but especially in her shoulders and arms.  When you fall, your arms should come out and prevent you from taking a complete spill.  Sometimes Meghan is able to catch herself, other times her arms will collapse and doesn't catch her fall, so she lands on her face or head.  This is the worst feeling.  Today was probably her worst day as far as falling and she had a few big falls.  These are the kind of days where I wish her surgery was tomorrow instead of a month away.  I try my hardest to let her be a kid and explore her surroundings, but I wish I could just wrap her up in bubble wrap :) 

But.....tomorrow is a brand new day and we'll start over tomorrow!

:)

The shirt order is officially submitted!!!  The order is for 60 shirts (WOO HOO!)  :)  I am such a happy mommy :)  None of this would've been possible if it wasn't for our amazing family and friends!  A HUGE thank you to everyone that ordered shirts or wristbands!  With the money we raised from the shirts and wristbands, we will be donating $288.00 to the Chiari and Syringomyelia Foundation, $122.25 to the Hydrocephalus Association and $122.25 will be going to the 2013 Team Meghan hydrocephalus walking team.  This will then be donated to the Hydrocephalus Association on behalf of Team Meghan at the 2013 walk.  In total, we raised $532.50 which will be donated to two hard working organizations doing research to find a cure.  Amazing!

I will be enjoying this quiet week, as it seems after this week, we start our list of doctor appointments before Meghan's surgery.  Meghan will have PT and OT on Wednesday.  She had a break last week for Thanksgiving and will be hard at it again this week.  A few things her therapists are working on with her are feeding herself with silverware (this is a huge struggle), building strength in shoulders, pulling herself to the standing position with no support.  Meghan is very resourceful and will look for anything to help her get to the standing position.  Meghan has a team of 3 therapists that come to the house each Wednesday.  She has 3 more weeks of therapy and then will be done until the end of January or early February, depending on how her recovery goes.  These girls are so dedicated to Meghan.  They told me two weeks ago that they would like to come and visit with Meghan when she gets home from the hospital and is well enough for visitors.  I am so thankful for their patience and dedication to Meghan.

Happy Thanksgiving!

We would like to wish a very Happy Thanksgiving to all of our wonderful family and friends!  We have so much to be thankful for this year!  For those that are traveling - safe travels!

This year, Luke will be spending Thanksgiving with his Dad in Missouri with the extended Suess family.  He left on Tuesday night and will be back on Sunday evening.  We will miss him!  We are going to my Dad's for Thanksgiving lunch and will be having my mom and one of my brothers and his new wife over for Thanksgiving supper.   I absolutely love getting together with family, sitting around the table eatting wonderful food while sharing stories from the past.  We will be missing out on spending the holiday with Jeff's family in Iowa, but we will see them in a few weeks for their Christmas.

We took advantage of the very rare warm weather last weekend by putting up the outside Christmas decorations.  I'm sure glad we did it last weekend as the high for this weekend is 30 degrees and blustery!  We will put the tree up on Friday and I can hardly wait to see Meghan's face when she sees it lit up! 

Happy Thanksgiving, everyone!!!

Brotherly Love

Luke and I were outside doing yard work this past weekend and out of no where he said to me, "Mom, I pray for Meghan all the time at school.  I pray every day that she doesn't need to have anymore brain surgeries."  It took me a few seconds to answer him back as I was fighting tears.  I told him that that was a very nice and thoughtful thing of him to do and that God listens to our prayers and that he does his best to answer our prayers.  This little boy is a total boy to the core, but he has the BIGGEST heart, especially when it comes to his sister.  A few days after Luke told me this, I got an email from his teacher letting me know that she was touched by Luke's daily prayer about his sister and how he prays she doesn't need anymore surgeries.  God has blessed me with two wonderful children and I'm so honored that I was chosen to be their mom!

We have a walker!!

It's official...Meghan is a walker!  She, of course, is thrilled about her new found skill, as are we!  She's been walking on and off since the middle of September, but this weekend, she decided she wanted to mostly walk.  She is such a big girl now :)  Each day she gets better and better.

I also have pictures of shirts that we are selling in honor of Meghan.  I am going to attempt to post the pictures on here, but I am so new with blogging that I am very unfamiliar with posting pictures on here, but will give it a try.  Here's some info on the shirts:

Tshirts - $18
Youth S, M and L
Adult S, M, L and XL

Sweatshirts - $22
Youth S, M and L
Adult S, M, L and XL

Hooded sweatshirts - $29
Youth L only
Adult S, M, L and XL

The shirt with blue lettering is hard to read since it can't be enlarged.  On the front of the shirt, it reads I wear a ribbon in honor of the survivors, warriors, caregivers, the families and for the lives lost.  Support Hydrocephalus Awareness.  The back says Team Meghan and has a 2 tone blue ribbon that says Hydrocephalus on the ribbon.

We are also selling silicone wristbands for $3 each.   I will attempt to post pictures of these as well.  The purple wristbands say Find a Cure - Meghan's Chiari Warriors and the 2-tone blue wristbands say Find a Cure for Meghan - Hydrocephalus.

All proceeds for the Chiari items are going to the Chiari & Syringomyelia Foundation and the Hydrocephalus items will be split with 50% of proceeds going to the Hydrocephalus Association and 50% going to the 2013 Team Meghan hydrocephalus walking team, which will be donated to Hydrocephalus Association on behalf of Team Meghan at the 2013 Walk.

Surgery date

Today was a big day!

Meghan had OT and PT this morning.  This was the first time Meghan had therapy since finding out about surgery.  I talked to them about Meghan possibly needing SMO's.  They suggested that we wait until she has her surgery and then request a consult with a PT at Children's while she's recovering.  They said a PT at Childrens will do a consult and determine if she needs to be fitted in SMO's or not.  She might not need SMO's in hopes that the surgery will improve her low muscle tone.  If she would need SMO's, they said we don't want her to be fitted in or around New Ulm as they don't deal with fitting kids for braces often and might not get the best fit for her.  The PT staff at Children's deal with it on a daily basis and will get her the best fit if she needs it.  So, we will wait until January for this.  They also brought Meghan special utensils to use to learn to start feeding herself since her range of motion in her wrists is very limited.

We also got confirmation on Meghan's surgery date, which will be January 2.  We will go to the Cities January 1 to do lab work.  We will stay in the cities over night.  We have to check in at the hospital at 6am and surgery will start at 8am.

We also ordered awareness silicone bracelets for her 2 conditions.  We are excited to get them and spread awareness!  I will post pictures of the bracelets when I get them in the mail, but that will probably be a couple weeks yet.

I found a place in Mankato that does screen printing and I got the artwork back today!  He originally told me it wouldn't be until next week.  He's really on top of things and is honored to do the project for us.  Once we finalize the artwork, we'll be able to take orders for tshirts and sweatshirts!  Things are starting to move along!

Meghan has been taking more steps lately!!  She went a few weeks without doing much walking, but has been walking more the last couple of days. 

It was a busy, but very successful day :)

Attempt to explain new diagnoses....

Since Chiari is a rare disorder and not very well heard of, many people have asked what Chiari (kee-ar-ee) Malformation and Syrinx is, which is what Meghan has recently been diagnosed with.  I will do my best to try to explain these two conditions.

There are 3 different types of Chiari Malformation.  Type 1 is the most common, and is what Meghan has.  Type 2 is more severe and is accompanied by Spina Bifida.  This type can not be operated on.  Type 3 is a very serious and very rare type and also can not be operated on.  Luckily, Meghan's type can be operated on and the hope is that her symptoms will go away after surgery.

Chiari malformation is a brain abnormality that causes the cerebellum, the part of the brain that controls coordination and muscle movement, to protrude into the space normally occupied by the spinal cord. Some children are born with the condition, and others develop it as they grow (Meghan's neurosurgeon believes Meghan was born with Chiari, along with Hydrocephalus).  Chiari malformation sometimes happens because the space at the back of the skull, where the cerebellum sits above the spine, is too small or is unusually shaped. These "cramped quarters" squeeze the cerebellum and even part of the brain stem, which controls the nerves in the face and neck, down through the foramen magnum (a funnel-like hole below the skull through which only the spinal cord usually passes).  The pressure caused by Chiari malformation on the cerebellum, brain stem, and spinal cord can keep them from working correctly. It can also block the movement of cerebral spinal fluid (CSF), the liquid that surrounds the brain and spinal cord and protects them from injury. When CSF doesn't flow properly, it can build up in the brain and spinal cord and block communication of the brain's messages to the body (In Meghan's case, she has total blockage of CSF flow.  This alone warrants surgery).   If a Chiari malformation is severe enough to block the flow of CSF or put significant pressure on the brain or spinal cord, a child's nervous system can be affected. Symptoms can include dizziness and problems with balance and coordination. This means a child might fall down a lot, walk unusually, have trouble grasping items, or have poor hand-eye coordination.
Other symptoms can include:

• neck or chest pain
• headaches that are brought on by coughing, sneezing, or laughing
• difficulty swallowing, which may cause gagging, choking, or vomiting
• difficulty speaking
• rapid eye movements or vision problems like light sensitivity or blurred vision
• hearing problems like a tinnitus (ear ringing) or hearing loss
• weakness, numbness, tingling, or other abnormal feelings in the arms and legs
• insomnia
• depression

Signs of Chiari malformation in babies include:

• irritability when being fed
• excessive drooling
• weak cry
• trouble gaining weight
• arm weakness
• developmental delays

Children with Chiari malformations might have other conditions that are associated with the abnormality, such as:

• Hydrocephalus: An excessive buildup of CSF in the brain that causes an enlarged skull and, if left untreated, can lead to brain damage, a loss in mental and physical abilities, and even death.  Meghan was diagnosed with this in April 2012 and had surgery to place a shunt in her head.
• Syringomyelia: A disorder in which a cavity called a syrinx develops in the spinal cord. This cavity usually fills with fluid and stretches the spinal cord, which can cause permanent nerve damage and paralysis.  Meghan also has this on her lower spinal cord.  The hope is that after her decompression surgery, that her syrinx will diminish.  If it does not, she will need another surgery a few years down the road to remove the syrinx.
• Scoliosis: A condition that causes a curvature of the spine. Scoliosis can be a complication of syringomyelia, which causes an imbalance in the strength of the muscles that hold the spine straight and upright.  Meghan does not have this........thank goodness!

Unfortunately, there is no cure for Chiari malformation. Most children who don't have symptoms won't require treatment.  When symptoms do occur, and are serious enough to warrant surgery, your neurosurgeon will decide if surgery is necessary.  If surgery is necessary, it is called decompression surgery.  The surgery will help to relieve pressure on the brain and spinal cord, restore the flow of CSF, and prevent additional damage. This surgery usually takes several hours and involves removing part of the skull and a portion of the spine's top vertebra.  Surgery isn't a cure but it can help to greatly improve the problems caused by a Chiari malformation. It does have drawbacks, though. Surgery can be painful and can put a child at risk for infection and other complications.  Many people believe once the decompression surgery is done, that they are cured.  That is not the case.  The hope is that the decompression surgery will improve Chiari symptoms.  However, it is a possibility of a person that has been decompressed to have the Chiari come back.  This is common in kids whose brains are still growing, or if a person is involved in a whip-lash  type accident.  The whip lash motion can trigger the Chiari and a person can experience the Chiari symtpoms again.  30-40% of people who have been decompressed report being symptom free after surgery.  Another 30-40% report their symptoms improved slightly and another 10-20% report no relief of symptoms after surgery.  We ofcourse are hoping for a completely successful surgery for Meghan and that NO other surgeries will be needed for her down the road for Chiari, or her syrinx.

MRI results

Well, Meghan's MRI was just two days ago.  It was a rough day.  She had been fighting a cold a few days before her MRI so we were concerned she wouldn't be able to have her MRI.  A day before her MRI, her cold disappeared, so we were happy with that.  Of course, as Meghan's luck would have it, we were 15 miles away from Childrens for her MRI and she vomited.  I thought foresure she would not be able to have her MRI.  But, luckily, she didnt have a fever and I told the nurse and ICU doctor that Meghan vomits when she gets over heated and I felt that is what happened this morning in the vehicle.  She got cleared for her MRI. The MRI took a little less than 1.5 hours.  She had images taken of her brain checking the Chiari Malformation, the spine checking the syrinx, and what's called a CINE (sin-e) MRI, which checks the flow of cerebral spinal fluid along the spinal cord up to the brain.  Fluid flows up the spinal cord, over the brain and back down the spinal cord with each heartbeat.  They are checking for any blockage of CSF fluid flow.  Meghan took a little longer to wake up from the sedative this time, but she did great!  Once she was awake for a while, we headed over to the Neurosurgeon - Dr. Petronio.  He is wonderful!  He asked us a bunch of questions, asked about her symptoms, asked about her development since the shunt was placed, and did a neuro evaluation of her.  Then he went over the MRI images.  He told us she definitely has Chiari Malformation.  Her brain herniation out of the skull pertrudes by 9 mm.  Doesn't sound like much, but it is a decent size herniation.  He then talked about the syrinx on her lower spine.  It was the same size from 3 months ago.  He then talked about the results from the CINE MRI.  She has complete blockage of CSF fluid.  Given her symptoms and that she has complete CSF blockage and a syrinx, it was determined that she needs to have decompression surgery within 6 months.  This is an invassive surgery.  The surgery will take 2-3 hours.  Meghan will be in PICU the first night, then will be in a regular room for another 4-5 nights.  The FULL recovery time at home is up to18 months, but she should be somewhat back to herself 3 weeks post op.  Anytime you are dealing with opening the brain, you need to allow your brain plenty of time to heal.  The advantage we have is her age, and kids her age usually bounce back faster than an adult.  We are working on scheduling a date, but right now, it is looking like the first or second week in January.  We hope for a successful surgery and that no further decompression surgeries will be necessary.  During her neuro exam, he mentioned that Meghan has Hypotonia in her ankles.  He defined them as being floppy, very low muscle tone.  She also has flat feet.  He talked to us about Meghan possibly needing braces.  He said that as she gets older, she will eventually walk on the inside of her feet if not corrected.  I will be talking to her PT and OT next Wednesday about this and to see if they think we need to take her to an orthopedist.

2 more weeks

EEK!  In just two more weeks, we will be on our way to Children's for Meghan's MRI.  I try very hard not to think about it, and to keep busy.  But, it's always in the back of my mind.  The waiting game is getting hard on Jeff as well.  We just have so many unanswered questions that we know will be answered soon.  I just keep telling my self that I believe in miracles, and I believe God will bless us with a miracle at her next MRI, and everything will be just fine.

15 month well baby check up

Meghan had her 15 month well baby check up with Dr. Sievert today.  Since Meghan is a small girl, we all take turns guessing what her weight will be.  Here are her stats she got today:
Weight:17lb 8 oz - .32 percentile
Height: 28 inches - 1.76 percentile
Head: 48.3 cm - 96.17 percentile - she has a larger head size because of her Hydrocephalus.

I was the closest in guessing her weight - I guessed 17.14.  I guess we are all just so excited for her to be in her new carseat, but she has to weigh 20 pounds before she can go in it.  Hopefully by Christmas! 

We discussed a few concerns about Meghan with Dr. Sievert today, but, didn't get much clarity, as I expected.  Most of her issues are neurological, which is where Dr. Petronio comes in.  Dr. Petronio is her neurosurgeon at St. Paul Childrens Hospital.  A few concerns we have about her are chocking/gagging/swallowing issues.  She will choke, or gag, on food periodically...not all the time and not every day. Anyone who knows Meghan knows we need to have her food into small pieces or she will shove all the food in her mouth.  Because of this, we are very careful she doesn't put much food in her mouth at a time.  A couple days ago, I was feeding her pudding and she choked on that.  This is a symptom of Chiari.  Another concern we have is Meghan's left foot not having the same reflexes as her right foot.  Feet and hand numbness is another symptom of Chiari.  I just hope things aren't getting worse with her Chiari. 

About 2 weeks ago, we were contacted by Childrens to schedule her next MRI.  This is scheduled for October 16 and it will be a 2 hour MRI, where she will be sedated.  She will have images taken of her brain, and spine.  She will also have a CINE MRI, which is checking the flow of cerebral spinal fluid - to check for any blockage on the spinal cord.  We will hopefully know much more about her Chiari and syrinx after this MRI.

Good news - last Wednesday, Meghan decided to take a few steps all on her own!  She was more thrilled to walk than we were to see her walk I think.  Her eyes lit up when she took those steps...it was amazing to see!  She hasn't taken any steps since then, but we know she can do it!!

The Beginning

First, I'd like to thank you for taking time to read about Meghan's journey.  In the short time she's been with us, she has been through SO much and has shown us how much of a fighter she is.  I wanted to share her story and her journey, as well as our journey as parents, and a family so people can try to understand what we go through from day to day.  I will warn you...this first post is LOOOONG, as it starts from her first day of life.  Thank you for your continued support.  It will forever be appreciated!


June 10, 2011 -

This is the day that God gave me the most precious gift in the world...being a mother...for the second time! I will never forget the moment when the doctor announced I gave birth to a brand new little GIRL! We were so overcome with joy...all we could do was cry happy tears. We named our new bundle of joy Meghan Elizabeth Nelson. She weighed 8 lbs. 14 ounces. Big girl! She even outweighed her big brothers birth weight. Not sure Luke liked that?!?! I can remember holding her in the OR room feeling complete. Jeff left me to take Meghan with the nurses to get checked out while I went to the recovery room. Once the nurses brought me to my regular room, I was told I wasn't able to hold my new little girl. I felt like I was having a bad dream. Why can't I hold her...what's wrong???? Her oxygen stats kept dropping to levels that the nurses weren't comfortable with. They wanted to monitor her. It felt like eternity before I could hold her. Finally a couple hours later, the nurse brought her in. Jeff handed her to me and put her in my arms. I looked her over and fell so deeply in love with her. But, something about her wasn't right. I felt it. Call it mothers intuition, but I knew something wasn't right with her. I noticed her right side of her forhead stuck out farther than her left side. I also noticed the right side of her head slightly misshaped. No one seemed concerned nor did any of the nurses say anything about it to me, so I blew it off, and told myself it was like that from the position she was inutero. I told myself that it would go away within a couple days and to forget about it.  In the meantime, I couldn't get enough of her. I enjoyed introducing her to her two big brothers. I loved seeing her brothers eyes light up when they got to hold their new little sister. A couple days passed in the hospital and we we discharged and were able to go home and enjoy our time together as a family. As the days went on, Meghan became rather irritable. Her head shape didn't change. I looked at our daughter all day long, looking into her eyes, wondering why it hasn't changed yet. I never said anything to anyone thinking people would just call me paranoid. I don't want to be that paranoid mom :) When Meghan was rougly 2 weeks old, she started projectile vomiting. So, we switched bottles hoping that would help. It did not help. She would also have 10-15 dirty diapers a day. Needless to say her bottom was very red. June 20th, 2011. This is the day the medical journey started with Meghan. We brought up our concern about projectile vomiting with Meghans doctor. He suggested we try a soy formula. We also got some antibiotics for her red bottom. Poor girl. We left the doctor and went straight to the store to get soy formula hoping this would be the cure all. We switched and noticed her BM's becoming less frequent, but her vomiting continued. So did her fussiness. What is wrong??? Meghan continued with the projectile vomiting so Meghan had an ultra sound of her stomach looking for pyloric stenosis. That came back normal. Vomiting continued so she had lab work done. That all came back normal as well. By this time, we noticed Meghan's weight to slow down DRASTICALLY. A couple months passed with no change. We decided to take her off soy formula and go back to the formula she was on in the hospital. That was the worst thing we decided to do. No lie, within a half hour of Meghan having 1 ounce of the new formula, she started having diarrhea. And this would be up to 20 times a day. We took her to the doctor and he said it was due to an allergy to the formula and that she could have the diarrhea for up to 3 weeks. ARE YOU KIDDING ME??!?!?! I felt like my whole entire day was changing Meghan's dirty diapers one after the other. By this time, I had started doing daycare again and felt so overwhelmed. I felt like I was barely living, barely surviving. Not able to enjoy my little girl. But, I'm a mom and I do what I need to do to make my little girl as comfortable as possible. The 3 weeks passed and Meghan slowly got back to her normal again. But her vomiting continued. There was even a few times where she quit breathing for a few seconds due to chocking on the vomit. We were so scared. We were finally referred to take Meghan to a GI specialist. We didn't know it at first, but he ended up being our angel in disquise. We took Meghan to see the GI doctor, gave him Meghan's medical history and he suggested we have xrays of Meghan's GI track and a barium swallow test. A few weeks later, we took Meghan for those appointments and were told everything was normal. We didn't know what to do. At this point, we were concerned with Meghan's lack of developmental milestones and it was suggested that we look into early intervention physical therapy to help her with her developmental delays.  Meghan was tested on 3 different occasions by a PT and OT and she was approved for physical and occupational therapy. Meghan was at a stand still at gaining weight, and developmentally, so we decided to get a second opinion from a pediatrician on Meghan.  I felt like her primary doctor gave up on us, so I wanted someone new to take a fresh look at Meghan. Our main concerns about Meghan with the second opinion pediatrician was low weight gain and vomiting. I felt like no one believed us when we would tell them she would vomit up to 30 times a day. He ran some tests on her and everything came back normal. UGH!!! He suggested we go back to the GI specialist. Jeff and I debated for a couple days if we should go back to the GI doctor. We wondered what he would tell us that he hasn't already told us? We thought he couldn't help. BUT, we are dealing with our daughters life, and deep down we both knew there was a reason why all of this was going on her with and we knew we needed to find out what the cause was. So, we scheduled our appointment to meet with the GI doctor again. At this appointment, he became our angel in disguise.  He asked us if she had ever had an MRI of her brain. WHAT? Why would she need an MRI of her brain?!?! My daughters brain is perfectly normal. She's puking...that is a stomach issue...not a brain issue. She's tiny, but this is because of the amount she vomits everyday, right?!?! He explained to us that her head size was just a little on the large side. Nothing major, but he told us he's thourough and doesn't like to miss anything. He reassured us that he didn't think they'd find anything, but that he suggested that be our next step. My heart ached. We walked out to the scheduling area and the scheduler called St. Paul Childrens for a brain MRI. This is not happening. Not to us...not now. I felt like I was in a bad dream again. We got our appointment scheduled and walked outside. I wanted to ball my eyes out. Jeff did his job and reassured me over and over that everything would be okay. But, I knew it wasn't. I kept thinking about her head shape. Her forehead portruding out on one side. The bump on the back of her head that two other doctors told me was nothing - that it was just the way her skull fused together. I knew there was something going on inside her head. I felt it when I touched her head. I felt it everytime I gave her a bath. I would stare at her wet head, where all her imperfections were more evident when her hair was wet, and I cried. Everytime I gave her a bath...I cried for her.  The days passed and we moved into our new house. A week after we moved, we went to St. Paul Childrens for Meghan's brain MRI. We decided that we would stop at Chili's in Shakopee after the MRI for a good sit-down meal. We arrived at Children's. I didn't know what to expect, I just felt like I was walking in someone else's body. I was in a dream, a fog. I went where the nurses told me to go, did what they said to do. I watched them as they put an IV in Meghan's wrist and she fought them. I cried with Meghan...I felt her pain. I held her as they gave her Propofel, the sedative. Within a few seconds of the sedation drug, she was out. It was extremely hard handing her over the the nurse to take her back to the MRI machine. I pulled myself together, as did Jeff. We waited. We were told the MRI would take 45 minutes. An hour passed. This was taking longer than we were told and something didn't feel right.  I remember the door opening and the nurse wheeling Meghan in to the room. She looked so peaceful. I started getting her bottle ready for her so that it would be ready when she woke up. I knew she'd want it right away, as she couldn't have anything to eat 8 hours before the MRI.  As I prepared the bottle, I heard Jeff ask the doctor if we're good to go home. The next words I heard changed my little girls life forever. Well, we found water on her brain, which is a condition known as Hydrocephalus.  We are trying to get a hold of the neurosurgeon to see what he wants to do, but he's in surgery right now.  Once we get in touch with the neurosurgeon, we'll be in to talk to you. There was silence. Neurosurgeon???? I don't know a lot about medical terminology, but I know enough that a neurosurgeon is someone who does surgery on the brain. What is going on? Does Meghan need BRAIN surgery??? No...couldn't be. Meghan woke up and the nurse told us that we couldn't feed her as she didn't know if the neurosurgeon wanted more MRI's that afternoon yet or not. We walked and walked and walked with a crabby, hungry, 9 month old. We waited and waited and waited to hear what the next step would be. Finally, the nurse allowed me to give Meghan apple juice. A little while later, we were told to go meet with the neurosurgeon's nurse practitioner. She explained to us about Meghan's new diagnosis. She explained that Meghan needed emergency surgery to instal a shunt, which would drain the cerebral spinal fluid from Meghan's brain down to her stomach. When an infant has hydrocephalus, symtoms are a large head, poor weight gain, developmental delays, fussiness and seizures. Meghan had all of these symtoms, except seizures. We were in total shock. I was relieved that after an almost 10 month search for what was wrong with Meghan, that she finally had a diagnosis. But, why her brain? Why couldn't it be something simple? We walked to what would be our home for the next 5 days - the hospital room. We met with doctor after doctor, nurse after nurse. It was all so overwhelming. I couldn't comprehend what anyone was saying. I just nodded my head. All I wanted to do, besides taking my daughter and running out of the hospital, was to lock myself in the bathroom and cry. Jeff had to go back home to get clothes for us and lock up the house. We contacted everyone in our family and gave them the updates. Surgery got scheduled for right away the next morning. I don't think we slept at all that night. I remember just watching Meghan sleep. I wished that I was the one going through this, not my innocent daughter.  We were told she probably had constant headaches. Loud noises only added to that. All of this is starting to make sense. I know surgery is the best thing, and would save her life. We made it through the sleepless night, and prepared for surgery. We walked downstairs to the operating waiting room. I wanted to run away with Meghan. But, I knew her having surgery was the best thing for her. I held her while we were waiting for her to be taken in for surgery. How would I be able to hand her over to the nurse? I didn't think I could do it. We all cried. Everyone but Meghan :) I worried that she would scream as she was taken from me, but by the grace of God, she didn't cry at all. That was easier on me. I was okay knowing she wasn't screaming. We waited for surgery to be over. FINALLY, the neurosurgeon came out and told us everything went well. THANK GOD! He said she had a fair amount of pressure on her brain and that it is possible for her head size to go down just a little due to the pressure being gone, as well as the fluid. He told us we would have a whole new little girl within 3 months after surgery. We couldn't wait! We got through recovery, which went so much better than we expected. There were a couple hiccups with recovery in the hospital, but she made it and showed us how much of a fighter she is. I am truly inspired by her. I coudn't wait to get home, get back to my little boy, our new home, and wait for Meghan's new personality to appear. When Meghan was 7 months old, she was labeled as failure to thrive. But just 2 weeks post surgery, she rolled over. HOLY CRAP! We were SOOOOO thrilled. Our neighbors probably thought we won the lottery when we squeeled in excitement the first time she rolled over. Two weeks after that, she decided she could not only roll over one time, but from one end of the room to the other. Kiss that failure to thrive! The new Meghan is here and she's THRIVING!! When we were discharged from Childrens, we were told Meghan would have follow up MRI's every 3 months until she's 2 to check her shunt. Her shunt can fail and her tube can get blocked, causing water to accumulate on her brain again, so that is why she needs an MRI every 3 months. Until she can verbalize with us any symptoms of a shunt failure, she goes every 3 months.  Before we left the hospital we were told by the neurosurgeon that he wanted an image of her spine as well. Hmmm...ok. The day came to have her follow up MRI. Jeff and I felt great about Meghan's development and were sure we wouldn't get anymore bad news about Meghan. When we got to the MRI area, the tech asked why we are having an image of her spine. We were dumb founded and said the neurosurgeon wanted it. We didn't know why. She explaiend that when they image the spine, in order to get a good clear image, they usually sedate kids as the slightest movement can ruin an image. They took images anyways. We were feeling great about the visit and was looking forward to telling the NS about Meghans progress. The NS walked in the room where we were waiting after the MRI. She sat down and said the good news is that Meghan's shunt looks great and her third ventricle size is right where it should be. I know when I hear "the good news" that bad news is about to follow. Now what??? She asked us if we had ever heard of Chiari Malformation. Ahhhh...no.....why? She explained that Chiari Malformation is when the brain is too large to fit in the skull so the brain essentially gets squeezed out the bottom backside of the skull, and the brain then gets pushed down onto the spinal cord. She said Meghan also has a syrinx (fluid on the spine). And possibly a tethered cord, but didn't get a good enough image to say foresure. She said they would like another MRI of the brain and complete spine in 3 months. She will be sedated for this MRI again. They will compare the next MRI to this MRI and decide where to go from there. Two options are wait and monitor, or surgery. My head is spinning again. We weren't given much information on her new diagnoses other than the spelling. She told us not to do much research on the internet as there are alot of horror stories on the internet. True. But, I am a mother, who will do as much research about health conditions my daughter has. I want to know about anything that concerns her. What to expect, what her conditions of her daily life will be like, the success stories, the horror stories.  I think it's very important as a parent to educate yourself on anything your child is going through...especially when they are unable to talk and you are their advocate.  Her next big MRI will be October 16. Until then, we will continue to help her get stronger. Most of all, we will love her and give her support.