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!