Last Monday, Meghan had a full day of appointments and procedures. We started the day with a sedated MRI of her brain and spine. This took 1.5 hours. When she came back to the recovery room, she had her skin biopsies and AFP blood draw (tumor marker test). The biopsies and blood draw were done while she was still sedated so she wouldn't feel anything. After she woke up from sedation, she had her abdominal ultra sound. The last appointment for the day was with Neurosurgery. She handled the busy day very well! She is a trooper! Here is what we know so far from results. Hydrocephalus and Chiari are stable at this point. In March, Meghan's ventricles had gotten too small from her shunt overdraining, so the Neurosurgeon turned her shunt up by 1 setting. The reason he did this was because Meghan was at risk of having slit ventricles if her ventricles became too small in size, so turning the shunt setting up should increase the fluid in the ventricles and fill them up to a more normal size.  The hope was on the MRI she had last Monday, her ventricles would increase in size since having her shunt setting turned up. When the Neuro read the radiologists report from Mondays MRI, they reported that the ventricles didn't change in size...however, when the Neuro compared MRI images with us from the last MRI to Monday's MRI, they clearly increased in size. Not much, but they increased, and that is what we wanted to see! The change that we saw is on her spine. She has always had 2 syrinxes throughout her spinal cord. She now has 3 syrinxes. Also, one of her existing syrinxes increased in size. The Neuro did mention to us that when a syrinx reaches 5 cm in width, they think about placing a shunt in the spine to drain the fluid from the syrinxes. Meghan's biggest syrinx size is 3.4 cm. So for the time being, we are just watching and waiting to see what happens. We know that the possibility is there to have a shunt placed in her spine, but we also know miracles happen! The reason for the shunt is because syrinxes can cause permament nerve damage if they get too large. The abdominal ultra sound came back with good news…no tumors!  The AFP levels are within normal limits as well!  We are waiting for news on the biopsies, but it could take 1-2 months before we get results.  We got bad news that Meghan’s Geneticist is leaving Children’s to go to a different hospital out of state.  We are sad to hear this, as she has been working very hard on helping us try to get answers.  We have an awesome care team and it’s hard to see someone go.  But, I am sure the new Geneticist will be just as good!

Waiting for IV placement - pre MRI

 

 

Post MRI, biopsy...waiting for sleeping beauty to wake

Waiting for our last appointment for the day!!  Almost done!

Meghan had a pre-op a few days before her MRI.  During the exam, the doctor found that Meghan had middle ear infection in both ears.  He did a tympanogram on her ear drums.  A tympanogram tests how the eardrum and middle ear are working. This test is important because fluid or other problems in the middle ear can affect hearing. Fluid in the middle ear can cause hearing loss. During a tympanogram test, a small earphone is placed in the ear canal and air pressure is gently changed. This test is helpful in showing if there is fluid in the middle ear.  Meghan’s ear drums didn’t measure any movement and they were completely full of fluid.  She was put on an antibiotic and nasal spray to try to get the fluid to drain on its own.  She will have her ears checked again in a few weeks and if the fluid is still there, she may have to have surgery to drain the fluid.  Apparently, it is not painful when you have fluid in the middle ear, so if she didn’t have her pre-op, who knows how long it would’ve been before we found the problem.  When you have fluid in your middle ear, people sound muffled and they are hard to understand.

Growth hormone shots have been going okay.  She asks for them every night because she knows she gets a treat after the shot, but she starts to cry as soon as we get everything ready.  Breaks my heart every night, but I know it needs to be done.  We have 2 full weeks under our belt already with shots.

School is going really well.  We had our first conference with her teacher and she is doing a great job at school.  She is making adequate progress in all areas.  Speech and motor skills are still main areas of focus.  We need to decide by the next IEP team meeting in March/April, if we want to transition Meghan into a preschool class that has typical kids and special needs kids mixed together in the same class for next year.  If we all decide that transitioning Meghan would be appropriate for her for next year, she will most likely have a more one on one Para with her, mainly for safety reasons since she is quite smaller, and delicate :)  It doesn't take much to knock her over.  Right now, her class size is 6 kids.  If we would transition her, she would be in a class size of roughly 10 typical kids and up to 8 special needs kids.  The teacher said her concern with transitioning her next year is that the other preschool moves through the day at a much faster pace and she isn't sure Meghan would be able to physically keep up with the others.  Cognitively she is ready to be transitioned, which is awesome!

Meghan got to meet her runner through the I Run for Michael group!!  Meghan and Jenn met face to face for the first time on November 5th.  Jenn and her husband, Ryan, flew from Maryland to see Meghan.  When they met for the first time, it was an incredibly amazing moment that we will never forget!  They stayed with us for a few days.  We gave them a tour around town, went to Schell's Brewery, made pizza, played games, talked a lot about the different ways we talk and the different things we eat, met some of our family and made lots of memories.  It was a fun time!  They even came with us to a doctor appointment so Jeff and I could learn how to give Meghan Growth Hormone injections at home!  Meghan bonded with Jenn and Ryan pretty quickly!  Luke also enjoyed meeting them.  He got a kick out of their accent and loved talking to Ryan about farming.  Colin hung out with us on Friday night for pizza and games.  We are hoping to go to Maryland this summer to see them and meet their little boys.

 

 

 

 

Welcome signs.  Luke made the green sign.

Waiting for Jenn and Ryan to arrive...they are about 15 minutes away!

15 minutes til they are here!

First night staying with us and Jenn made us a yummy chicken casserole...with a very hungry 3 year old on-looker :)

Meghan with her bling from Jenn's latest fun run

Meghan's new Minnie dress from Jenn

Luke even got a few gifts from Jenn and Ryan.  He will treasure these forever!

Luke's new favorite tshirt

Meghan loves her Jenn :)

Showing some love

Making pizza!  This is Jenn and Ryan's Friday night tradition with their family!

Mom can I eat this YET???

The pizza making crew

There have been a lot of new things going on the last few weeks!

Last week, Meghan had her annual appointment with her Orthopedic specialist.  We also met with an Orthopedic surgeon at this appointment.  Meghan had x-rays taken of her hips, legs and feet.  This is so they can get accurate measurements of her length differences (her right leg is longer than her left).  Last year, Meghan's leg length difference was 1/2 of a centimeter.  This year, she has an LLD of 2.3-2.4 centimeter difference.  But, with the measurements of her hip, femur and tibia, she has a combined difference of 1 inch.  The increase from last year to this year is much higher than they anticipated it would be.  The specialist and surgeon discussed with us that it is likely that she will need surgery in the future on her right leg to stop the bone growth so that her left leg can catch up.  We were told surgery isn't even considered until the LLD difference is 2+ centimeters.  Meghan is slightly over that, but we are going to give it another year and see where her length difference is at that point.  She did get a new shoe lift and it is taking Meghan a little bit to get used to the new lift.  Her old lift was 1/4 centimeter and her new one is a 1.5 centimeter lift.  Her lift is now too big to fit in her shoe, so we have to send in her shoes and they will cut open the sole and put the lift in the sole of her shoe.  Because of her length difference, she is closely monitored for scoliosis.  They checked her spine and it is straight so that is awesome! 

Earlier this week, we had a consult with Neurology about the febrile seizure Meghan had a month ago.  Basically, Meghan gets a freebie pass this time, but IF she would ever have another seizure, we would need to call them and let them know and they would decide if she would need to have an EEG done.  If she would have another febrile seizure, I do not think we would put her though an EEG though, as the chance of happening to catch her having that kind of seizure is very slim, since they are brought on by a sudden increase in body temp.  We also discussed Meghan having episodes of vomiting during the night.  This only happens while we are away from home, but it doesn't happen everytime we are away from home.  She said it could be shunt related (change in pressure, position can cause vomiting), or it could be her body's way of telling us she has anxiety about being in a new environment.  Either way, we will be talking to her Neurosurgeon about this at our next appointment.  We do not need to go back and see Neurology unless more seizures happen down the road, so that is good that we do not need to add another specialist to the list!

After almost 1.5 months, we finally heard back from Meghan's Endocrinologist regarding growth hormone therapy.  She spoke with Meghan's Geneticist and they both agreed it would be good to start Meghan on Growth Hormone with close monitoring.  There are some risks to being on GH and the Endo wanted to make sure we aren't putting Meghan in a bad position by having her on growth hormone due to some of the risks.  The hospital submitted the pre-authorization to the insurance company today.  This process can take up to a couple weeks.  Once the pre-auth is complete, the prescription will be sent to the pharmacy.  The pharmacy will then mail us pre filled/disposable injections.   Once the pharmacy has been given the prescription, a nurse will come to our house to teach Jeff and I how to do injections.

The next big appointment will be on November 10.  She will have a sedated MRI of her brain and spine.  She will also have skin biopies done after the MRI.  After the skin biopsy, we meet with neuro for the MRI results.  She is also due for an ultra sound, but I am not sure we can fit this into her already busy day.  This will be a lot for her to go through in one day already.

Some very exciting times are coming up in less than a month!  Meghan will meet Jenn, Meghan's runner.  Meghan and Jenn were matched a year ago and the relationship between the two of them is pretty awesome!  I am honored to call Jenn my friend, as well!  They celebrated their 1 year matchiversary on September 29th.  Jenn and her husband will be flying in from Maryland on November 5 and will be staying with us until they have to fly back home on November 9.  We are very much looking forward to meeting them and being able to spend time with them!

Meghan continues to enjoy school.  She is learning so many new things.  Her teacher says she is a big helper in the classroom and her bus driver says she is his most enjoyable bud rider :)  He said the other kids on the bus call Meghan little girl.  I think he gives Meghan cookies on the bus every day, because that is the first thing Meghan says when she gets home :)  That is definitely the way to get to her heart...give her food and she's your BFF :)  Meghan had her picture taken for school...so cute!!

September is a BIG month for our little lady!!  The month of September is Hydrocephalus awareness & Chiari Malformation awareness month AND September 15-21 is Growth awareness week.  We walked to raise awareness of Hydrocephalus on September 7th.  Our team, Team Mighty Meghan, had 19 walkers and we raised $800 as a team, and all of the Minnesota teams combined raised $55,684 (to date)!!!  All of the money raised goes towards research to find a cure.  This was our 2nd year walking to support our Mighty Meghan, and everyone else affected with Hydrocephalus.  A huge thank you to those to walked, donated, or both!  We are forever grateful for your support! 

Meghan started Pre-school on September 2nd.  AHHHH!!  It's so crazy that my baby is in school!  There were some big tears the first time she rode the bus, but otherwise she seems to really like school!  There are 6 kids in her class.  She has a bus buddy, Wyatt.  She has OT/PT once a week and speech twice a week, while at school.  Her speech is really coming around!!!  Since school, she has learned the words me & you.

We've always known that because of Meg's neurological conditions, she has a higher risk of having a seizure than typical people.  She had her first seizure the evening of September 12.  She had a febrile seizure, lasting between 8-10 minutes, which was caused by a sudden spike in her temperature.  It was a very scary night for Jeff and I, and it was hard to see what a seizure does to a person.  It took her a while to fully recover from it.  I spoke with neurology, and because of Meghan having this seizure, they are moving up her MRI to be done as soon as possible.  At this point, a shunt malfunction is not a concern because she is not running a fever, irritable, vomiting, or hard to wake up.  They would also like Meghan to have an EEG to look for seizure activity.  Most likely, she will have a 1 hour EEG done.  She will be prescribed Diastat (a rescue medication) incase of another seizure.  The EEG and MRI/skin biopsy have not been scheduled as of yet, but should get scheduled this week. 

Finally...we got GOOD news!  This past Wednesday, Meghan had a full day of appointments which included 3 urology procedures followed by an appointment with the urologist for results.  The good news is that there is no bad news :)...except that the poor girl had to endure several hours of not-so-fun procedures.  But, atleast now we have solid answers.  Meghan has increased fluid in her kidney's because...plain and simple...that is how God chose to make her :)  There is no blockage or reflux.  Woohoo!  The Urologist basically said that since there is no medical reason for the extra fluid, he does not need to see Meghan again unless she would start having urinary tract infections, or if more bladder/kidney issues are seen on her future ultra sounds.  This is very awesome news to us!

 Meghan got to decorate her gas mask with princess stickers

Thank goodness she was able to eat during this test!

What else do you do while trying to keep a little one occupied during 5 hours of testing? 

Take a selfy :)

 

 

 

Happy Fourth of July!!!

Last Tuesday was Meghan's last day of speech therapy, and Wednesday was her last day of PT/OT until she begins preschool in September.  They were very bittersweet days!  It is SO different not having the therapists coming to our house twice a week! We sure do miss them!  I forgot to take a picture of Meghan with her speech therapist, but remembered to take a picture of the PT/OT ladies. We made Meghan's therapists a little thank you gift.

We got results from Meghan's growth hormone stim test.  Meghan had 7 blood draws to measure how much growth hormone her pituitary gland produces.  Meghan's results were: 2.9, 1.5, 1.5, 5.6, 3.9, 3.2 and 6.2 ng/ml.  In order for her Endo doctor to officially diagnose someone as having true growth hormone deficiency, the peak number needs to be 5.0 ng/ml or under.  Meghan's peak number was 6.2.  Normal is 10.0 ng/ml and up.  What her numbers show us is that growth hormone is being produced, but at a pretty low amount; hense Meghan's growth issues.  Since Meghan's peak number was 6.2, which is a low number, she does qualify to receive growth hormone shots.  We are going to wait until August and we will meet with the Endo.  At that appointment, she will evaluate Meghan and we will discuss treatment to make sure we are all in agreement.  She sent us information to read about hormone therapy that she would like us to read before we meet in August.  There are definite pros and cons to GH therapy!  If we all agree to try hormone therapy, we will do a one year trial first.  If her body accepts the growth hormone and she grows, we will continue for 10 years.  If her body does not accept the growth hormone, we will stop.  I am glad that we have answers on her suboptimal growth.

Miss Meghan had her 3 year pictures taken a couple weeks ago.  Here are some of her super adorable pictures.  Her brothers even got to join in on the fun!! I just looooove the sparkles in her eyes!!!

Still no news from last week's tests.  I am going to wait another week and if we still haven't heard anything, I will call in and see if the results are back.

The Urology tests will be done on July 2.  This was the earliest we could get all 3 tests done AND meet with the urologist after the tests all on the same day.  Meghan will be slightly sedated due to her having to have a catheter placed.  As a parent, I do not want any new findings....BUT, I am feeling really bad having to put her through these tests, so I am just really crossing my fingers that they are able to find something so we don't put her through all of this for nothing. 

We are again signed up to walk in the Hydrocephalus Minnesota walk.  The walk will be on Sunday, September 7, and it will be held at Mall of America.  The walk will be on the first floor of the mall.  Registration and check in is from 7-8am, opening ceremony is at 8am and the walk will be from 8:15 - 9:30am.  If you would like to join our team and walk - OR - if you are unable to walk but would like to donate, follow these directions:
- log onto www.hydroassoc.org
- hover your mouse over the WALK tab towards the top of the main page
- Click on 2014 walk events
- Scroll down until you see the MN walk for September 7.  Click on the link for Minnesota-Twin Cities
- On the right side of the screen, click on Team Mighty Meghan
- On the right side of the screen, click on the JOIN NOW button
-Follow the registration process
**Each member of your family will need to be registered seperately to walk.
**There have been A LOT of issues with the hydroassoc.org website lately, so please be patient if it takes a couple of tries to register or donate.
**I can place another clothing order, so let me know if you or someone in your family is in need of more Team Meghan clothing!  We also have a lot of bracelets left, so let me know if you need any!
We look forward to walking again this year!

Meghan had her growth hormone stimulation test done a couple days ago.  From start to finish, including IV set up, and placement, we were there for 5 hours.  The test involved 7 different blood draws to monitor her growth hormone level, one oral med in the beginning to get her pituitary gland jump started since it doesn't produce much growth hormone during the day, and then another med through the IV about 1/2 way through the test.  Overall, Meghan did super!  The child life specialist brought in an Ipad to keep Meghan distracted while the nurses placed the IV.  She did great until the needle poked through, then the tears flowed.  The hardest part was keeping Meghan distracted since she couldn't eat from midnight before the test until the test was complete - which was around noon.  She fell asleep for about an hour and even slept through an entire blood draw and IV med change.  We don't have any results yet.  Hopefully by the end of the week.



Snuggled in with Mom, finally getting some much needed rest!!

Enjoying some ice cream after finishing the test!!

Meghan had a routine abdominal ultra sound a few weeks ago.  I got a call from genetics last week saying that her Hydronephrosis (fluid in kidney's) is more severe and that we need to schedule an appointment with her urologist.  With Hydronephrosis, there are Grades 0-4.  Grades 0-2 is considered mild, Grade 3 is moderate and Grade 4 is severe.  Meghan has always been at Grade 1.  The last couple of ultra sounds the fluid has increased and she is now at Grade 2.  Given the fluid increases over the last couple of ultra sounds, the urologist would like to do a series of tests to see if we can get answers as to why urine is collecting in her kidneys.  There is a blockage somewhere - just need to figure out where, and if we find the blockage, what the next step would be to correct the blockage.  So, our next step is to have 3 different tests performed - 1. Urodynamics  2. Renogram      3. VCUG  All 3 tests will be done on the same day and will require her to be cathed and have an IV.  Depending on how she tolerates being cathed, she may be slightly sedated so the tests can be performed.  We will schedule the appointment as a sedation procedure, as it's a good possibility that Meghan will need to be sedated in order to be cathed.

The very best news of all lately is that Meghan's runner and her husband just booked a flight to meet Meghan in November!!!  Jenn and her family live in Maryland.  It will be so awesome to have the two meet in person and Jeff and I are excited to meet them, too!  Meghan and Jenn have quite the bond.  November can't come soon enough and we are so fortunate to be able to have this opportunity!

Meghan has 2 more weeks of therapy and then she will graduate from the birth - 3 early intervention program.  It will definitely be a bittersweet day!

We've had a busy couple of weeks!  A few weeks ago, we had our big therapy team meeting.  At this meeting, her therapists went over Meghan's test results.  It is so awesome to see the progress on paper that Meghan has made since last year!  She is doing a super job!  While she is still developmentally delayed, she is making progress and has never plateaued - and that is what matters the most.  We also learned that Meghan will graduate the birth-3 program when she turns 3 in June.  If she would've scored super low on her testing, she could've qualified for extended services during the summer months.  Not going to lie, I tear up just thinking about Meghan's last day of therapy because her therapists have been such a huge part of our life for the last 2.5 years.  They have unbelievable patience and knowledge and I will forever be thankful for them.  We did find out that Meghan will start ECSE (early childhood special education) in September at the public school.  She will go to school 4 mornings a week.  She will receive all of the therapy she gets now, but will have therapy at school instead of at our home.  Going to school will be a HUGE change for Meghan (and me), but I know it will definitely help with her social skills and is the best thing for her so she doesn't fall farther behind.  The nice thing about the class Meghan will be in is that a couple of the other kids are smaller in size too.  Her class can have up to 8 kids.  We started writing her IEP plan and will finish the final details when we have a team meeting at school in August before school starts.

Today, Meghan had a couple appointments in the cities.  She had an ultra sound and a check up with the Endocrinologist.  We were a little shocked when we found out that her weight and height has stayed the same since our visit with the Endo 6 months ago.  Miss Meghan weighed in at 19.6 pounds today (shoes off/clothes and diaper on).  The original plan for today was for Meghan to have her IGF level retested and if her level was still low, she would've then talked about doing a growth hormone stim test.  However, the plan changed when the Endo saw no growth from 6 months ago.  So, the doctor decided to skip over having her IGF level retested and is going right to having a growth hormone stim test done.  This is a test that takes several hours.  We will stay at the short stay unit while this test is performed.  This is what I know about the stim test:
 A stim test shows the amount of growth hormone your body makes. Not enough of it may cause one to grow slowly.
A stim test is used to test your pituitary gland. It helps the doctor see if this gland is working well. The pituitary gland makes growth hormone. The stim test shows whether your gland makes enough growth hormone. During the stim test, you receive special medicines by IV to trigger the pituitary gland to make growth hormone. In some people, the gland does not make enough growth hormone in response to the medicine. This could mean you have growth hormone deficiency, or GHD.

 

The pituitary gland releases growth hormone in pulses or bursts, mostly while you sleep at night. During the day, not much growth hormone is produced. To see whether your body makes enough growth hormone, the pituitary gland must be triggered to make it. Then the doctor can see how much is made. A stim test is not like most blood tests. A blood sample is not taken just once. Instead, the doctor measures growth hormone by taking many blood samples throughout the coarse of the stim test. The test usually takes between 3-5 hours to complete.  After the test, the blood samples are sent to the lab. There, the amount of growth hormone will be measured.  We should get Meghan's results the next day.  If Meghan does have GHD, we will consider starting growth hormone therapy, which involves daily injections until puberty.  If she doesn't have GHD, her doctor said she would consider trying growth hormone therapy to see how her body reacts to it.  While we don't look forward to giving her daily shots, I think we are both at the point where we are willing to try this to see if it helps her grow.

In the mean time, she would like us to add extra calories to Meghan's meals.  She would also like us to add carnation powder to Meghan's milk for extra calories.  She would like us to meet with a dietician and we are hoping this can be done while Meghan is having her stim test.  The stim test should get scheduled in the next day or two. 

She wasn't sure about the ultra sound at first today.  She held onto my fingers for dear life!

A much happier girl now that no one is poking at her.  Waiting for the Endo doctor.

       

Today we celebrated Meghan's 2 year Shuntiversary!!!  We are so proud of how far she has come the last 2 years!  This is a pretty big anniversary, because 50% of shunts will fail within the first 2 years.  Phew!!  We made it this far and I KNOW we'll make it many, many more years with this shunt!

How did we celebrate?  By spending the evening at the doctor's office, in true Meghan fashion :)  Miss Meghan has had somewhat of a rough month.  She had strept a few weeks ago, had the flu last weekend, and now has strept again.  She is on a stronger antibiotic now so hopefully that does the trick!  We also had a super yummy DQ treat after the doctor visit.  This weekend, we'll take the kids to a hotel to have a weekend of fun and to celebrate this milestone, and also Luke's awesome report card!!  Looking forward to a weekend away!

 Meghan resting after her shunt placement on 4-7-2012

 

Meghan (2 years old) at the Hydrocephalus walk



Meghan has been a busy little girl.  She has been working hard at therapy and we are seeing progress.  She is making the most progress with fine motor skills and speech.  She LOVES to learn and she picks up on things very quickly.  Gross motor is still a big struggle, but she continues to work hard!!  She has spent the last month going through lots of testing with all of her therapists.  Her therapists asked us to take a tour of the ECSE (special ed) preschool through the public school system.  We had our tour a couple weeks ago.  There is a good chance that Meghan will begin preschool in September, depending on how she scores from the tests she's had over the past few weeks.  The classroom can have up to 8 kids and there are 2-4 para's in the classroom on a given day.  Preschool will be 4 days a week, from 7:45-10:45ish.  While she is at preschool, she will still receive all of her therapies she is currently receiving.  The only difference is Meghan will have therapy while at school, instead of at our house. We were very impressed with the preschool room, the teacher and the para's.  The room is very structured and everyone gets very involved.  While we were there, Meghan got to participate in a few things, too!  It was so cute watching her!  We will find out how she scored on her tests and we will work on transitioning Meghan from an IFSP plan to an IEP plan on April 9.  This meeting will be with all of Meg's therapists, a developmental specialist and the special ed preschool teacher.

She also had a follow up MRI a few weeks ago.  We met with her neurosurgeon after the MRI.  She was unsedated for this MRI and it was only 5 minutes long.  I was able to go in the MRI room with her and rub her feet.  They put a mirror above Meghan so that she could see that I was there.  I think that really helped her.  By the end of the MRI she wasn't crying anymore.  I am so proud of how far she has come with being okay with doctors and procedures being done on her.  A year ago, we couldn't even walk into a doctor office without her crying hysterically.  Her MRI results were essentially good.  Her neurosurgeon said her shunt was overdraining, which caused her ventricles to become too small in size.  Ventricles that are too big aren't good, and ventricles that are too small aren't good either as they can become slits.  Meg's NS said Meghan's weren't quite slits, but close.  So, he turned up the setting on her shunt.  This is done by putting a special magnet over her shunt valve and he can adjust the shunt setting by turning the magnet.  It takes just a few seconds to do and it doesn't hurt.  The hope is that by changing the setting, that the fluid will increase in her ventricles.  He said ventricles become too small due to overdraining, or because there is a blockage somewhere along the shunt system (again, Meghan's was due to overdrainage).  We just love her neurosurgeon.  When we first met him almost 2 years ago, he was very serious and we couldn't get a smile out of him.  Now, he walks in the room and greets Meghan and talks away with her.  He talked to us about having a couple things done down the road.  Meghan has had a change in her sleep pattern lately and is up often throughout the night.  If this continues, he would like to have a sleep study performed on Meghan.  He would also like Meghan to have neuropsychologic testing done within the next year to determine Meghan's particular learning profile.  As far as her Chiari malformation goes, at the moment it is stable, but features of Chiari are again noted on this MRI.  That is a little disheartening, BUT, we know what to watch for neurologically and we will just take it as it all comes.   Her next MRI will be in 3-6 months. She will be sedated for this MRI and it will be of her entire brain and spinal cord.  These MRI's usually last 1.5 to 2 hours.  She will also have her skin biopsy performed after the MRI while she is still sedated.  Next month she will have her ultra sound and will meet with the Endocrinologist again. 

It is crazy to think that one year ago, we were sitting in Meghan's PICU room waiting for her to wake up from her latest brain surgery.  These anniversary dates are always a day filled with many emotions ranging from ecstatic to angry to joyful to sad to thankful.  I'm not sure how to sum up all the emotions that I go through.  I am so ecstatic that surgery improved Meghan's daily life.  I'm angry that Meghan can't do some of the things that other kids her age, and younger, can do.  I'm joyful that we see continued improvements.  I'm sad that she has to go through so much at such a young age.  But I'm thankful for all of this, because if it wasn't for this journey we are on, we wouldn't have met the awesome families that we've met along the way, I wouldn't have changed my outlook on life and I wouldn't have such compassion for little ones that are fighting big battles.  We've learned so much and we are blessed to be on this journey, even though it can be a wild roller coaster ride at times!  We are so proud of everything you have overcome and continue to overcome!  We love you to the moon and back a million times over sweet girl!  And always remember to rock those scars!!!

Happy New Year (a few days late)!  2013 started out rocky with Meghan getting sick with the big flu bug 2 days before her 2nd brain surgery.  But, we got through that and rescheduled surgery for a month later.  The surgery date came.  Surgery went great and recovery went better than we expected.  The first 3 weeks post op recovery was hard, especially watching her re-teach herself to sit unassisted, crawl and walk again, but we got through it and Meghan showed us -- once again -- how much of a warrior she is.  Then, she got sick with rota virus, which almost landed her in the hospital, but thankfully we were able to get her well again in the comfort of our home, with daily check ups from her doctor.  We've learned of new diagnosis' in 2013, but none of this stops Meghan from proving to everyone that nothing will stop her.  We ended 2013 as well as I could have imagined.  This has been the first winter that she has been so healthy and it is great!  She has gotten a few mild illnesses so far this winter, but NOTHING like the last 2 winters!  We are also hoping for a hospital-free 2014, which would make it the first year she hasn't been hospitalized!  Fingers crossed!!!

Meghan's biggest issue is the back of her shunt turning red periodically.  We've discussed this with her neurosurgeon and he believes this could be because her shunt is draining at too fast of a rate.  We noticed this issue happening 1-2 times/week a couple months ago, but it does seem like this is happening more often lately.  The plan is for Meghan to have a rapid MRI (no sedation and the MRI will only look at her ventricles so the MRI will only take 5 minutes) in about a month.  Her NS will look at the size of her ventricles and if they are still small in size, he will turn down her shunt which will allow the cerebral spinal fluid to flow at a slower rate.  This will hopefully take care of the redness.  I have noticed her itching around the area of her shunt and shunt tubing lately as well.  Hard to say if she is just feeling it though as she now knows her shunt is there.  I always held onto hope that her head didn't hurt her.  However, my heart broke a couple weeks ago when she woke up in the middle of the night.  She was unconsolable for a good 10 minutes.  I finally got her calmed down (thanks Dora) and she laid down and pointed to the back of her head and said owie (in her own word).  I just wish I could go inside her little body and feel whatever she feels and take away any pain she might have.

Her speech.......oh.my.goodness!!!  LOTS of progress the last few weeks!  She has added 3 words (yeah, ice and on) to her vocab in the last month.  Her favorite thing to say right now is ah-o-moe, which is Meghanese for I don't know.  She is doing great saying single words!  She does struggle stringing a group of words together, but this will all come along eventually.  Once again, we are so lucky to have a great group of therapists working with Meghan!

We did hear back from the Geneticist and Meghan tested negative for Russell Silver Syndrome (a form of dwarfism).  So, the next step is a skin biopsy which will be done during her next sedated MRI sometime in May.

Meghan had her eye doctor appointment last week, which went great!!  The eye doctor has no concerns about her vision and from what he can tell, she doesn't have any neurocuteounous syndromes (which is on the Geneticists list of possible conditions).  He will get in touch with Meghan's geneticist with the results from today's appointment so they are up to date as well.  He would like to see Meghan in a year again to double check her vision seeing objects distantly.  He said she wasn't seeing as far as she should be, but she also wasn't very cooperative during this point in the exam, so her uncooperativeness is most likely the result of her low score when he checked her distance.  So it sounds like one more check up in a year and if there are no issues, he will not need to see Meghan again!

Meghan's biggest news is that she is now able to walk down an entire flight of stairs unassisted!!!  She did this for the first time on Monday...twice!!  The little stinker hasn't done it anymore since Monday, but that's fine because now we KNOW she can do it.  This is one of her therapy goals that she has been working on for a good 6 months.  But, in order for her therapists to be able to call this goal accomplished, Meghan has to show them that she can do this for 3 consecutive home visits.  Let's hope she will be willing to show off her new talent to them the next 3 visits so we can get this goal crossed off her "to-do" list!!!  This goal was dedicated to Meghan's runner, Jenn!  Meghan's next goal she will dedicate to Jenn is to walk up an entire flight of steps unassisted.  This will take time yet as it's a lot of work for Meg's little legs.  At the end of this blog post is a video from the day she walked down the entire flight of stairs unassisted.  She wouldn't go down all of the steps by herself while being videotaped as she gets camera shy!!! 

Today, Meghan and I set out on an honorary run for Meg Cross Menzies.  She was a mother of 3 small children, wife of a police officer and a dedicated runner.  She was tragically killed by a drunk driver the morning of January 13th while she was on her morning run.  I have very recently started running...very small distances.  This tragedy touched me and I wanted to do something to honor a life that was taken way too soon.  An event was created called Meg's Miles.  Anyone who wanted to run, walk, jog, could do so anytime of the day on January 18th.  So...Meghan and I decided to run 1.5 miles in Meg's honor.  It was the longest I have ran since high school, but we did it.  We did this in honor of Meg, her children, her husband, but we also wanted to do this to show our support for Meghan's runner.  We want her to know that we support her love for running and we think about her while she's on her runs or at a race event and we pray for her safety all the time.  Please take a moment to say a prayer for Meg's family, especially her husband and children.  Hold your children and loved ones closer, take a moment to call someone you haven't spoken to in a while and tell then how important they are to you and count all of your blessings.  RIP Meg!

Here's the stairs video...