Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Tuesday, March 27, 2012

Self Reflection

Being a mom of 5, there are many mornings that are just crazy.  Rushing around, trying to get the older ones ready for school, while making sure the younger ones are dressed and ready for the day..... emptying the dishwasher, getting a load of laundry in...getting school bags ready.... looking over my emails for Drama and music and making sure I have my "ducks in a row" for the day.... and of course making sure I gave Meagan her meds and have her settled.  It is a busy time of my day for sure.

There are many mornings when I'm so rushed, that I just have to go "as is".... I jump in the shower, jump out, and have no time for make up or hair. I'm clean, put together, but can't do anything to make myself feel "set" for the day just yet.  Many mornings like that I look in the mirror and think "UGH!"  Every mom knows that "ugh" feeling.. we all have mornings like that... we look at our reflection and think "hmmmmm....not my best day"....

Tonight I pulled up my computer to look at the blog.  I was holding Meagan on my lap... when her picture came up on the blog, her eyes LOCKED into place.  She just stared - at herself.  I looked at her, talked to her, and then realized she was looking at herself.  The beautiful black and white photo I put as her cover photo on this page.  She must have sat for several seconds just staring at herself.  I snapped a picture because I thought it was the sweetest thing.

What was she seeing? Did she know it was her own picture? What did she think of herself? 

Then I got to thinking how we are so hard on ourselves.  Those mornings we are rushed...and we look in the mirror and see that "blah" self we "didn't " make up or polish.  What about Meagan? What did she see in her photo?  It is a plain photo of her - no smile... yet so beautiful.  No color - yet so much character.  It made me realize that we see what we want to see. 

So maybe on mornings when things are a little crazy, instead of looking at my wet hair that isn't styled because I ran out of time, I will see a cleaner home for my kids.  Maybe when I see my face with hardly any make up because I was rushing out the door, I will see my time I got to sit with my daughters at breakfast.  Maybe when I look at myself in the mirror on those days, instead of my first thought being "ugh" at the clothes that don't fit quite right... I need to realize how much that "ugh" feeling was worth those 10 extra minutes with my baby. 

Meagan reminded me that self reflection is just that - not what we physically see... but how we interpret the image. What is behind the picture that tells the real story?

 Tonight when Meagan spotted the picture on my computer, she seemed drawn in by the cute baby face. 
There is a song from Disney's "Mulan" that says:

 "Who is that girl I see
staring straight back at me?
When will my reflection show
who i am inside?"

Well Meagan... your reflection does show a beautiful baby face.  But also, a role model.  A brave soldier.  A beautiful angel.

Because that is who YOU are inside. 

Friday, March 23, 2012

6 Months of a Miracle

Well here we are - already half way through Meagan's first year. It feels so crazy to be at this point already! Meagan had her 6 month check up today. She has gained 3oz (yippee) and is now in the .6% (yep.. that says POINT 6%)  for weight! Hey, the way I see it, at least she is on the chart :)  We go back in 6 weeks for another weight check to make sure she's staying steady.  She is weighing in these days at 11 1/2 pounds.  She is still wearing 3 month clothes and is by far my smallest baby at this point ... but she is just a little fighter - a peanut.

Enjoying some time with my girl


She did grow 3/4 of an inch.. she is 25.1 inches long.  Her head circumference has stayed the same at 43cm.  We will keep watching that closely.. if it doesn't change again by her next appointment we are going to double check on her sutures because even though her head is larger than a normal 6 month old, she should still experience normal head growth. (about 1/4 of an inch per month from this point on).  So we'll see what happens with that in the next 3 months.

She also got her 6 month vaccines... and a dose of Advil at my request.  Last time, she was really irritable afterwards, so this time we're going to keep the Advil in her for the first 24 hours and hopefully it'll help the pain and muscle swelling from the shots. 

Sleeping it off


As I mentioned before, Meagan received her second dose of stem cells a few weeks ago.  We have been working with her for 5 months now on head control and neck strength.  To be honest, we've seen no improvement.  Meagan had her initial evaluation last week with our new PT (who is wonderful). Her PT talked about head control being one of the first things we'd work on.  I agreed because even with all our exercises we were doing on our own we saw no progress.   She gave me a few new exercises to do and we made an appointment for 6 days later to start her therapy.  I worked with Meagan at home still, and was excited to get back to therapy because I saw little improvement.  Meagan was still "jello" in her neck.  The PT had put Meagan on a large ball and Meagan conformed exactly to the ball and hung over the side.  She then tried to put her elbows underneath her body and Meagan flopped over the top.  I tried this at home too with the same results.

Thursday came and we went back to therapy.  Meagan had been miserable the night before - she cried from 9pm to 3:32am.. literally.... it was awful! (In hindsight, I believe it was because a storm system was coming in... several Hydro kids have a lot of trouble when new rainstorms or pressure systems come through because of all the atmospheric changes.  And we did have thunderstorms and rain the following day). 
Meagan was tired and so she started off very fussy at therapy.  She cried and cried through the first few exercises.  Meagan's therapist put her up on the ball and started to roll the ball away. Out of nowhere... Meagan's head just stayed in position.. it didn't flop down on to the ball!! It bobbed for about 5 seconds, and then it landed on the ball.  But I was shocked...she held it a whole centimeter off the ball in a sidelaying position! Even the PT said... wow, from last week that is a huge difference.  You must have been seeing great progress this week.......
And that's the funny thing.  I really hadn't.  I had seen a few of my other kids in Physical Therapy... I had seen the progression... the strength that gradually comes and the improvements you see happen.  I had not seen any progression in Meagan's head or neck strength........ I was confused....

....Then I got to thinking about those good ol' stem cells.  How amazing would it be if they had worked their way into Meagan's neck and started to help her be strong in that area.  The more I thought about it, and the more I pieced together the timeline, it just HAD to be the case.  I got goosebumps just thinking about it.... "was I seeing the real and obvious sign of Meagn's stem cells working?"  I know some may say no... but I truly believe so. And even if it sounds like wishful thinking, I'm going to say so.  I believe those cells are in there working little miracles daily with God's help.... in her muscles and brain. I know it's part science (the cells) and part faith (prayer).  I know those two elements are working hand in hand to help Meagan keep growing in to her best self possible, and that is all I want for her. Just to be the best she is supposed to be.

Meagan knows who to root for in college basketball...has her "X" up with a little help from Mommy...... Go Xavier!

So here we are at 6 months old. Some terms I have read in Meagan's medical notes were:  An underweight body.  Head size still large for age. Eye misalignment. Spastic and unctrolled muscular movement. Overlapping sutures. Seizures. Developmentally delayed. Motor skills assessed at 1 month old.

I think, point by point, my report would read: A delicate petite little body.  A head with a lot of room for brain growth!  Eyes that are finally seeing me and other things.  Arm muscles trying to work on grabbing.  A shunt that is working.  Less seizures than we've ever seen.  Finally smiling, cooing, and playing with her hands. A 6 month old who is extremely cuddly.

In other words..... 6 months of miracles.

Love you Megs. Your life in and of itself is truly a miracle to me in so many ways.  Can't wait to see what the next 6 months brings us! Good days or bad, you are a miracle my peanut!

Saturday, March 17, 2012

Stem Cells Round 2

 Meagan's second stem cell infusion at Duke University took place last week.  Luckily for us, we have great parents and inlaws ... my mom and dad came down to keep the older kids in school and their routines....and Brian's mom flew in to take over the second half of the week.  We left the Sunday before her infusion and got to Duke Sunday evening. 

We had the pleasure of meeting up with Brian's sister, her husband, and their 2 daughters before we went to our hotel. They live relatively close to Duke, and Katie (Brian's sister) and I are very close so I was really looking forward to the visit.  Mike (her husband) is leaving soon for Afghanistan, so there was the added bonus of seeing him and wishing him luck/spending time with him before the deployment.  We had dinner together and I also got to meet their second daughter (2 months old) for the first time.  She was such a cutie.  I had to laugh at myself because I automatically reached for her with the "Hydro hold" but of course I soon realized Claire was much stronger than I thought.  Although I've had my 4 older girls, I'm so used to Meagan now, I "forgot" how strong a typical 2 month old is. Claire was such a sweetheart.. I was so glad I got to meet my newest neice!

Meagan (5 1/2 mos)  meets her newest cousin, Claire (2 mos) 

Meagan getting a snuggle from her Godfather, Uncle Mike, before he deploys.

After lots of laughs and a great time together,  we said goodbye to Katie and Mike and the girls and headed for our hotel.  We were excited for the next day - Katie and Mike surprised us by having an old friend of mine, who is a photographer, plan to come the next day to take Meagan's first professional pictures! We couldn't wait!

Monday morning came - we were excited for Meagan's pictures and spending a few more hours with Mike, Katie and the girls....but I got a phone call that morning... Katie was sick and had been all morning :(  I felt awful she was so sick!! The photographer was still coming, but, we were not going to hang out that day with Brian's sister and family because of them being ill.  It was disappointing but I was really hoping they felt better soon.  Being sick is NO fun at all!!  We said our goodbyes and waited for the photographer.

Now the story behind the photographer's connection with me is pretty neat.  I grew up with a military dad - we lived all over the place... all over the world.  On one of our tours in Germany, I met a girl named Tiffany Kay.  She lived on the other side of the base from me, so we'd often trade bike rides going across to each other's apartments, meeting at the playground, or we would see each other at school.  Time came to move again and we moved back to the States, as did she.  For the most part, we lost touch. 

Fast forward 22 years.... there is an amazing thing called Facebook.  We randomly reconnected through Facebook and began to keep in touch again.  This is when I found out she did photography, and in the past, since she lives near Brian's sister and her family, Tiffany had traveled to their place a few times to do photos.  So now she was coming up to Durham to do photos for us.  Such a strange feeling seeing an old childhood friend after 22 years... and then watch her photograph your child!! It was such a neat turn of events.

We took a few photos in the hotel room on a blanket because although it was a beautiful day, it was a bit cool and the breeze was definitely cool as well.  We did want a few outside shots, though, so we went up to the Duke Gardens on the campus.  We walked around a little bit and took photos.  The pictures Tiffany got were amazing. 

Meagan had been "off" that whole day.  The previous day, she had been smiley and very happy.  This particular day, she was just "gloomy."  Any Hydro mom knows "those days"... when your child is just not themselves and is almost not "with it"....  so the fact that Tiffany was till able to pull out amazing photos of Meagan is proof of her talents.  She was able to get so many great pictures - and really capture "Meagan" through Meagan's eyes and expressions.  Even on an "off" day, Tiffany was able to really tell Meagan's story.  I have posted a few of Meagan's pictures below - if you live in the Southeast (NC, SC, FL, GA, etc.) please contact Tiffany Kay Photography (https://www.facebook.com/messages/1601700739#!/tkayphoto ) and give her some love! She did an amazing job and will for you too.

After Meagan's photo shoot, Brian and I got some dinner and then went back to the hotel to get some rest.  It was going to be an early morning getting ready to go to Duke Children's for the day.

The next morning we got up pretty early.  Meagan had of course fussed all night.  I fed her, bathed her, and dressed her.  I put her in her cute red Minnie Mouse pjs... I thought it would be good luck.  We got our stuff together for the day (phones, computers, etc.... ) and left.  (Yes, it is a long day with a lot of waiting so we needed some mommy and daddy entertainment!)

We arrived at Duke Children's... we went up to the 4th floor and checked in.  We were taken back very quickly and Meagan got all her stats done.  Then we went into her room in the day hospital and waited for the nurses to come and start her IV.  The nurses came -- Meagan was in a SUPER good mood that day.  She was smiling and cooing like crazy! Matter of fact, several nurses came from down the hall just to see that baby who was making "all that noise." 

Meagan cooing and having a grand old time

Meagan didn't stay happy for long -- after 4 failed attempts at an IV, she was very upset!! I would be too! Meagan is just a really hard stick. she has teeny tiny squiggly veins.. ones that look good blow too easily. and ones that look bad are hard to get. The nurses finally said they were going to call in the PICU team to get Meagan's IV in so she wasn't more traumatized than she had to be.  The PICU nurse came in and got it on the first try! Yippee.  So then we waited for the doctor.

Meagan fell asleep after 4 IV attempts....Trey (music therapist) soothed her to sleep with some great guitar music.

Dr. Sun came in - she works with Dr. K on the cord blood infusions and so she handled Meagan's that day.  Trey the music therapist came in and all the nurses.  Dr. Sun got the infusion going.  It's amazing watching the blood travel from the bag...through the catheter and into Meagan's body.  Normally such a thing wouldn't even phase me, but knowing those stem cells were in there was just such a cool thing.  I wondered where they would go once in her body - how they would help her...if they would help her....what kind of miracles were possible with these undamaged cells...  It is just such an awe inspiring experience.

After about 10 minutes, the infusion was finished.  Meagan then got hooked up to IV fluids for a few hours to make sure she was well hydrated before she was discharged from the hospital.  Once she was finished with the fluids, we got the "ok" to leave.  We got our things and headed out.  We got some dinner and headed back to the hotel to get some rest before our long drive home.

All tuckered out from her big day

The infusion was a great experience, yet again.   Trey singing gently to Meagan..... the nurses talking softly... Meagan staring intently at every step in the process as if she was taking it all in... and Dr. Sun explaining step by step as the infusion happened... the whole environment is like something I've never been in before at a hospital.  It is a strange sense of being when the infusion is happening - it's like feeling love, hope, worry and comfort all at the same time.  I think it's because after going through so much negativity with specialists before Meagan was born, we were finally standing at a place where the doctors' sole purpose was to help babies like Meagan - to offer parents hope and view Meagan's potential as something important.

We report back in 2 months to let Dr. K and Dr. Sun know how Meagan is doing and if she is doing anything new.  If she is doing really well or we notice Meagan doing a bunch of new things, they said they may have us come back earlier than her 1st birthday for her 3rd infusion.  If things stay stable we will probably make plans to go back around Meagan's 1st birthday instead. 

So far, Meagan is still doing well.  We haven't noticed anything 'new' yet, or any changes from what she was previously doing.... but we know those cells are working wonders - even if it's in ways we cannot see outwardly. There may be miracles happening in Meagan that are not made obvious to us....but that's what hope is all about. And even if I can't see it, I"ll err on the side of hope every time.

Face of hope

Thursday, March 1, 2012

Eye Follow Up

Meagan had her follow up eye appointment today.  She did very well! They dilated her eyes to check structure.  The doctor said the structure of her eyes looks pretty good.  He also said she is tracking with both eyes and seems to focus with both as well.  She can't focus for long.. she will stare at "larger" things, like streams of light coming from rooms..etc. but as far as toys, once she 'locks on' and tracks it for a second or so, she will shift her eyes, or her head will turn and she will be looking "through" it once again.  The doctor said we'll watch this tendency and hopefully all she needs is time to continue to focus more than a few seconds on smaller items.

The doctor did say that she has severe farsightedness so next month when he sees her, he wants to look at her eyes again and probably put her in GLASSES!  A 6 month old in glasses?!?! How CUTE is that! haha.. I figure ... if she needs them, we'll roll with it and pick out some cute ones!

Outside structure is uneven - which is no surprise... her sutures are uneven too, so of course her facial features will be misaligned.  He said she does have quite a bit of turn in especially in her left eye - it seems to "float" more than the right.  So we're going to watch it and see if it needs any additional help down the road.

So for now we wait until she's officially 6 months old so we can put her in glasses.. and hopefully they "beef up" her vision to make those eye muscles stronger and her vision better.

Also, today for the first time in 3-4 days, she was actually ALERT and awake.  She's been kind of "eh" lately... but today she woke up with a big ol' grin and continued to smile at me as we were waiting to go back for her appointment.

In the waiting room, there was another mom waiting with her 4th grader.  She began to compliment me on Meagan and we started talking.  Meagn became fussy and she asked nicely if she could snuggle Meagan for a few seconds... her "baby" was next to her and in 4th grade and she missed that baby stage!  I of course said, sure! As she came over towards me, the woman asked how old Meagan was... I told her "5 months" ...  But.. without thinking, I forgot to tell her Meagan couldn't hold up her head.  The woman reached down and lifted Meagan up, as you would any baby, and Meagan's head went... FLOP! Straight back.  The woman's eyes said it all - OOPS!  But it wasn't her fault.. it was mine for not telling her to support Meagan's head.  Meagan didn't seem to care one way or the other.. she didn't get upset at all.  So I showed the "Hydro hold," so I call it... (one hand under the butt, and one hand under the base of the head) and snuggled Meagan for a few minutes.

Meagan did calm down... as I listened, I could hear the lady was whispering in her ear "Jesus loves you.. you are a gift".... I just thought that was so sweet.  We talked a bit more about what Hydro is, what Meagan had been through so far, and what some other families go through with Hydrocephalus.  Before we got called back, she thanked me for chatting with her...and then thanked me for choosing life for Meagan.  Not that it was ever a "choice" for me... but I really appreciated her recognition of the hardships moms with special kids go through.  And it was nice to run into a stranger who understood what a miracle any baby is.

So all in all... a great day at the Eye doctor for Meagan!  Now we go onto the Pediatrician tomorrow for another weight check.  Anxious to see if she's chunked out at all!

All smiles today!!!

Biggest one yet!

All tuckered out from a mere eye appointment! haha