Power of Prayer

Meagan has been working very hard  at PT.  Ms. Susan, her therapist,  has constantly been pushing Meagan on her head control - in positive ways.  She gives her a LOT of shoulder support and neck support so she can get her head balanced. We work Meagan a LOT on the ball and also alot with our bodies around her holding her in a sitting position so we can give her shoulder support and "prop" her head straight up.  Week after week, we'd look for that slight moment of progress, but Meagan would still flop backwards or forwards.  Even when Ms Susan would put her propped in a certain position and try to let go, Meagan would immediately flop.
 
Meagan has had zero head growth since January... this is a double edged sword.  We want her head to stay on the smaller side, obviously, to give her a better chance at "catching up" and gaining the strength to hold it up.... at the same time, we do want to see normal growth rate in her head size even though it's already large for her age because that means everything is moving as it should...and that her bones haven't fused yet. 

Nonetheless, we kept working with Ms Susan...and kept working at home, everyday.  Everyday I'd press on Meagan's shoulders and somehow work my body around hers to help her hold her head and try to make it a little stronger...a little more steady.  Once Meagan got her glasses 4 weeks ago, I did notice the first obvious "progression" in her head control.  Ms Susan, her PT, told us it may have alot to do with Meagan's feeling of balance - with the glasses, she is seeing a LOT more than she was...so she may feel a better sense of where she is in herself and her balance when we try to position her certain ways. 

The last few weeks, Meagan has been kind of "blah" in PT...for lack of a better word.  She always did well and seemed to be a little stronger each time, but the last few times I almost felt as if she had stalled or even regressed.   And then my dear friend, Jenn, called me with terrible news - her mom had suddenly passed away after battling lung cancer.  I immediately knew we would go to Virginia to be there for her, so we packed up the kids and made the 11 hour trip up. 

While there, we were also able to see my parents, Brian's parents, and I was able to attend my Godson's Baptism...while at the same time getting some quality time with Jenn and helping her in whatever ways we could. I really liked spending time with my parents and in laws.  And also enjoyed the time with my brother and his family because we don't get to see them that much.  Our girls loved being around Uncle Nick (my brother) and Aunt Christine (his wife), and their son, my nephew, Timmy.  I was really glad Meagan got a lot of time with Christine because she is extra special since she is her Godmommy.  The last time she held Meagan was in the NICU so Christine was so excited to see how much she'd grown and changed.  They got a lot of quality time together and exchanged a lot of smiles.  But, because of the busy trip, hours in the carseat, and the long drive home, I didn't get to work with Meagan as often as I normally do at home. 

 Meagan getting quality time with Godmommy

 We arrived home the middle of last week, and I was getting us back into our schedule and about to work with Meagan at our usual times.... but I noticed some of our kids seemed really tired and acted like they weren't feeling well. . Two 11 hour drives, hanging out with 16 cousins, and everything in between, I honestly wasn't surprised.  Who knows where they pick up the germs they do... kids are kids and it just happens.  When two of the girls started to have high fevers, I took them in to the doctor... turns out it was Strep, so we got them on meds. Of course, being the mom, normally we get lucky and have that "mommy immunity"...but this time I wasn't so lucky.  I started to feel horrible on Friday morning and by lunchtime was absolutely miserable.  Brian came home early and I got to rest.

 Everyone was starting to feel better as we started the weekend.  Tonight, after the kids went to bed, I was playing with Meagan.  I thought it was a good time to start working with Meagan again and get back into our routine.  I figured I would just do her exercise where I hold her sitting up, prop her head in a straight position and work on strength.  It's one of the exercises she tolerates most, so I figured it was a good place to start.  I positioned my hands and legs around her and got her into a sitting position, and then propped her head in an upright position.  I moved my hands from her neck on to her shoulders... and Meagan gave me her surprise of the week - her head didn't flop!

I tried to then pick her up into a sitting position to see if she'd lift her head.... but her head just flopped....so I repeated what I did before.   I held her in a seated position, then propped her head straight up and slowly slid my hands off her neck onto her shoulders......and she did it again -- she held her head in place! For about 5-10 seconds!!  I grabbed my video camera and took a video of Meagan "holding her head up" for the first time! ***You'll have to excuse the shakiness of the video - I was trying to hold Meagan's body up, correct her head when it flopped, and take a video all at the same time... so parts of it are pretty bad camera work!***  I'm so proud of her though!! She held her head each time about 5 - 10 seconds before it would slowly fall.  This is a big step for her!

I know Meagan has a lot of people praying for her - and for this we are eternally grateful.  But I do have to end this post by acknowledging my friend's mom specifically with her passing this last week.  Her name was Susan.  Susan was a prayer warrior on many levels...and I know she prayed a lot for Meagan.  She helped me so much last Fall in other ways too.... by giving great advice on how to handle the NICU from her own first hand experience, sending me random texts asking how things were going, sending small gifts for Meagan,  and by praying for Meagan daily. She also raised her daughter, Jenn, to be an amazing person who has come to be one of my best friends....Godmother to one of my girls... like a sister to me.  I would be lost without Jenn, but she is only who she is because Susan was her mother.   I have no doubt that Susan will still be sending prayers Meagan's way  ....... but now directly from heaven. So thank you Susan, for all your support last year.  For your daughter who constantly supports me. And for being such a special prayer warrior for Meagan. 

Jenn and me

Jenn meeting Meagan for the first time

 

I know on nights like tonight, I am seeing prayer at work.  No matter what doctors tell me Meagan won't accomplish...they just can never outdo the power of prayer.  Put simply, prayer brings us closer to God....and with God, Meagan will accomplish....and continue to give me little surprises like she did tonight. 

The Best Sick Day Ever

So... it finally caught up with me.  The dreaded "stomach bug" that no one wants to come to their home.  I woke up around 5am to nurse Meagan.. and I felt a little queasy.  I didn't think much of it - sometimes when I haven't eaten a lot the night before and wake up really early, I feel a little nautious.  I felt "better" and drove Kaitlin to school.  I got home and started laundry... and then I realized the nausea was here to stay.  I started to feel more and more queasy as the lunch hour approached.  I luckily had not eaten anything yet, but I felt so gross all day.  My stomach churning... feeling like I had to get sick all the time.... having to cancel my music lessons for the day..and lug through baskets of laundry to pack for our trip to Virginia.... it was a very frustrating and "blah" day to say the least.  I grabbed a bag (in case I got sick in the car)... got the kids ready to go and headed off to get Kaitlin from school.  Although I was in no mood to drive, I was a teeny bit excited because after I got Kaitlin from school we were going to get Meagan her glasses.

I pulled into the eye surgeon's office and went inside.  They had Meagan's glasses all ready for us.  They were SO cute!  Little pink wire frames ........ 

.....with little pink stars down the sides. 

They were absolutely adorable and so girly! They were a little big, so the Optician had to take them back and adjust and shorten the ear pieces.  The ones that would fit her well had a strap and pressed too much on her shunt, so we had to make these work.  He came back in a few minutes and they slipped right around Meagan's ears and fit great!  She looked so cute! There were several people in line behind us and they were all smiling at Meagan in her new specs.

She seemed to look around already when they first put the glasses on.  I took off her glasses when we got home for a second to see what she was seeing... it was definitely a lot of correction! The Eye Surgeon had told me her prescription was very strong because he's trying to salvage her muscle strength the best he can. 

We finally got home... I was still feeling badly...but you know how it is if you are a mom.  There is no time to rest, to sit down, to "recover" when you get sick.  There are still kids to tend to, house to clean, laundry to do, and many many other things.  I put Meagan in her bouncy seat and was working with her on grabbing toys.  I put a soft block in her hands and let go... she would not be able to hold on and it would drop.  So I started to push her hands together around the block so she got the sensation of "holding" something.  Each time I did it, I said "Squish!" and would laugh.  She really engaged me with her eyes and smiled.  After a few times of this.... I heard a little "Hah".... I thought... wait a minute.. is that what I think it is?

So I continued our "squish" game as I pressed her hands into the soft block toy...each time I made sure to smile big and say "Squish!" and sure enough... every time.... she chuckled!!

So as down as today started out with being so sick, it ended up being the best sick day ever.... Meagan got her glasses... and she laughed for the first time.  I hope this is the first of many laughs to come.  God is good.

Neurology and PT

It's been quite a busy few days for Miss Meagan!  She saw her new Neurologist yesterday.  We liked Dr. Z at the old practice - his bedside manner was great and he treated Meagan with respect... BUT... since he was only a "fill-in" doctor, he didn't have direct control over a lot of things we may need done with Meagan (EEG orders, prescription refills..etc.) and since he was just out of retirement to practice again, he is quite a bit older - and we'd like to have a doctor that not only has control over all aspects of the practice, but who will also probably be able to follow Meagan for quite some time and really get to know her.

I asked around and a student of mine has a mom who is a doctor - she recommended a Neuro named Dr. B.  Then, Brian came home from work and found out a coworker of his has a Downs child who struggled with seizures and was monitored by a Neuro named Dr. F.  Both my student's mom and Brian's coworker were very happy with the Neuros they recommended and so I decided to look them up.  To my surprise, and my delight, I found out both were with the practice we had left, but that they had also left and branched off into their own practice! Then it clicked that Dr. F was always the one who had read Meagn's EEG reports, but we had just never met with him in person.  I had heard good things about him from other Hydro families as well - it was more of a dislike of the practice and how it ran that was not a good thing.  I also saw on their website that the one CNP who we had really liked had gone with them! Excellent! So now that I knew who the doctors were, had heard good things about them, and saw they were off in their own practice seperate from the old one, I had a good feeling. I called to make an appointment, and yesterday was the day!

We arrived early and handed over all our paperwork and Meagan's "book" (her medical file).  They scanned everything in and a nurse soon came out to call us back.  We went back and Meagan was weighed and measured.  Her head circumference is still 44cm .... her length is still 25 1/2 inches. .... but she gained a POUND!  A whole pound since last month - this is great news for 2 reasons... #1. I was so glad she gained some weight since she has been struggling with that... and #2. I felt so much better that her pop up seizures were simply due to lack of correct medication dose since she had gained weight.

He went through Meagan's entire file with us - from her birth until now.  He asked if we'd been over her latest scans... I said yes, but not in as much detail as I like.  He chuckled and said ok.... Dr. F started to go through her scan with us....He did say he was concerned he didn't see much brain growth from her November scan to her February scan - he said things could still change, but, it's something to watch.  He said every kid "fluffs" brain tissue differently, so we'll see what her July scan shows.  He also said her Corpus Collasum is extremely thin and small - he said probably due to all the pressure...but he can see it.  He said in her initial scans it almost looked like an HPE scan (where the CC is missing) but in her Feb scan he can see it, it is just super thin and bowed. (again, due to the pressure).  He said that he sees a few other things that may be of concern in her brain matter - but, he said he wont' give us "names" or "diagnoses" because things can change around so much, he doesn't want to confuse us, or say something and later it actually isn't what he thought.  He said unless something shows up very clearly, he probably will show restrain in giving Meagan other "diagnoses" until she's closer to 2 years old and a scan can reveal a lot more.

He really didn't tell me anything I "didn't know".... but it was more just going over what we'd had done in the past, and explaining to us in more detail what the scans meant, since our NSG tends to be more conservative and not share as much info (he doens't like to worry us). He's great and will answer any questions, but often times I think of the questions later so it was nice to have the 'in depth' discussion.

 Dr. F kept looking at Meagan's birth scans and pictures and was just so happy with how far she's come.  He couldn't believe he was looking at the same baby that had the scan he was looking at.  He noticed her muscle tone was pretty tight, which is ok for now - hopefully we'll get a lot out of her at PT..etc.  We just have to make sure it doesn't continue to tighten and become spastic. He said if we can keep those seizures at bay, he hopes she will continue to make good strides.  He was loving her little smile and talked to her quite a bit.

He said to start Meagan on her new dose of medicine that night, and hopefully we'd see her seizures go away again after her body adjusted.  I was so glad she'd gained weight.  She responded so well to the Keppra, that I think this new dose will do the trick again and we'll be back in business.  He said to come back in 2 months and he'd love to re-check her development and talk about the plan from there.  She is scheduled for another scan in July to check on her skull sutures and if they have fused or not, so we'll find out more on that this summer.

ALl in all it was a great visit - Dr. F was extremely attentive, answered all questions we had, took his time with us, and was very loving and engaged with Meagan.  I think we are in a good place right now with a Neuro (FINALLY).  He seemed very on top of things, and told us if there were any issues with her meds getting changed, to please call him right away.  He also said if we noticed any other kinds of strange movements or seizures start, to please call right away so they can check her out.



******
Fast forward to this morning, Meagan had PT... she was a bit "drugged" because of her new dose of meds... but she was happy and NOT sleeping like she was when they'd up her Phenobarb. (I'm so glad I got her off that stuff).  SHe was lazy though!! She wouldn't roll, and was not interested in toys.  After working with her for a bit, her PT decided to put her on the ball.  Meagan did really well actually because she was kind subdued, so she let her work with her.  There were a few seconds where Meagan would keep her head a few centimeters off the ball if Miss Susan (the PT) held her arms, so that was exciting.  She did a few more trunk exercises and some rolling exercises and then she let Meagan rest because she was obviously so out of it. 

Overall, it's been a "good" week of appointments and therapy.  I feel like Meagan is being well taken care of and I'm glad we seem to have her core team of doctors in place.  Now we wait until next week when her glasses should be in - I can't wait to post pics of her in them.  A sweet baby in cute pink glasses - who couldn't love that!? :)

Through Meagan's Eyes

Meagan had her follow up today with her Pediatric Eye Surgeon.  He thought her eyes still seemed to be seeing things - but they wander a LOT still.  He said babies after 6 months of age shouldn't have such a problem, so he wants to put Meagan in glasses.  He said she may need surgery to correct her eyes and give them the best chance at good vision - but first he will try glasses.  He said that he wants to try this first because if it works, it means one less surgery.  He said he will know in 1 month if the glasses are working... if they don't, off to eye surgery she will go.

He also wants her wearing a patch - for one hour per day.  We switch eyes everyday... so hopefully this along with the glasses really helps her pull her eyes forward and strengthens them.  Today, when the doctor expressed concern over her keeping the glasses on, the positive thing I thought of was... well, Meagan doens't GRAB yet very well - so maybe the glasses will stay on well and do their job! So, that was a "good" spin to put on everything... and then I thought... "maybe it's a good thing she's not grabbing yet"....

Lastly, as we were waiting in the front for Meagan to be fitted she was getting fussy, so I had picked her up, and propped her facing forward in a sitting position.  I had my left arm close to her body and she comfortably slumped her head over to the left side, over my arm, and rested there.  She stopped fussing.  So I left her like that.  Then I realized there was a big TV and she was staring at the light. 

A woman walked by and looked over at Meagan - she said "Your baby is sideways".... I looked up and said "Excuse me?" ... It was such an odd comment.  Then I realized she was looking down at Meagan....she continued on .."Your baby is sideways - she's falling.  See, her head is falling over to the left..."

The firey Aries in me wanted to snap back "She can't hold her head up yet".... but... I counted a few seconds and realized, the poor woman was probably saying something completely innocently ... and I didn't want to make her feel awful if that was the case.... so giving her the benefit of the doubt, I just smiled and said "Oh, thank you."

I did chuckle on the inside.  I guess this was my first "wake up call" that Meagan is looking older now.  She's still like a newborn to me in her body language...so snuggly....so things like the lady saw don't even cross my mind.  With her sitting on my lap, out of her carseat, it's more apparent she's an older baby, but that she cannot hold herself up, so I guess that will get more "looks" as time goes forward. The confrontational side of me thought maybe I should print out Meagan's medical sheet and just hand it out like a business card... answer nosy questions and spread Hydrocephalus awareness at the same time.  But... after one look into Meagan's calm, reassuring eyes.... then I thought... well, maybe I'll continue to be more charitable, take a breath, smile like I did today.... and let Meagan do all the talking. 

Gonna Be a Long Night

And just as smiley as she was yesterday... she's been like this tonight.  It's probably her head hurting her... the small seizures she's had all night ....or even something as "normal" as teeth... but it's so hard to tell with her since she has so much going on.  But I don't like seeing her uncomfortable, that's for sure.

Light of Christ

As we were approaching Meagan's first Easter, something really struck me as we entered Holy Week.... I remember reading:

"There would be no Easter without Good Friday" ...


How true is this statement. Images from "Passion of the Christ" come to mind.... our Lord suffering immensely, being horrendously tortured, and diying a painful death.....yet it was all for a reason.  And probably a reason bigger than we will ever fully comprehend in this world.  All that suffering was so Easter Sunday could happen - so He could live again and give us all the promising gift of new life.

The "Good Friday" statement rang true to me this year more than ever.  While Meagan has had a good streak here recently, and while I am grateful for that, I have also seen her on horrible days. Pictures of those days swirl through my head...and aprehension for the "next bad time" always brings me worry.  But despite the hand Meagan has been dealt, God has shown me this Easter that it is all for a reason as well.  Without her struggles, we wouldn't appreciate her triumphs appropriately.  Through Meagan's suffering, she is also offered new life. 

This Easter, I am filled with joy and gratitude.  What a gift for Christ to give himself for us .... and what a gift Meagan is to our family..... for she is closer to Jesus than anyone I know on this Earth.  She is so pure....she has Christ's light within her daily.


Happy 1st Easter Meagan.  May Christ continue to give you new life and many blessings as you continue to grow.  And may his light shine through you and teach us all what true joy in suffering really is.

Love you.

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. 

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!

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

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