1 hour And A World Away

It has been quite a busy end of the school year for us all.  Events, shows, illnesses, teaching, doctor appointments, and the list goes on.  The kids were finished with school last week and we planned on just hanging around the house and relaxing for Memorial Day weekend.  Then Saturday came, and we were all getting a bit antsy! It had been a while since we had gone anywhere as a family to just enjoy time together.  Funds were very limited, though, so Brian came up with the great idea to head up to Chattanooga on Sunday after Mass to just get the kids out for a bit, but not be too far from home.  The idea sounded great to me!

We got up really early Sunday morning.  Brian and I have started back to our P90X regimen and didn't want to miss a workout, so we pulled ourselves out of bed at 6am, finished our workout, showered and got things in order for our trip.  We arranged for the dog to be taken care of, were able to book a room through a program we can use from Brian's work, and packed a bag. We headed out the door for 9am Mass and left for Chattanooga after Mass was over. The kids were very excited!!

Exploring the river and downtown!

We got to Chattanooga a bit after lunchtime.  We walked around the city for a bit, got the kids some lunch and then went back to the hotel for a bit.  We purposefully went somewhere with a pool.  It was way too hot outside and so we were glad the pool was an indoor one! Meagan had never been in a pool before, so I was very excited to get her in there and let her experience the water!  The kids of course jumped right in and played for a while - Meagan fell asleep in her stroller and was out pretty good.  I didn't want to wake her and jolt her out of sleep so I let her rest.  About 30 minutes before we were going to leave the pool, she woke up!

I'm awake Mommy!



 I was so glad! So I changed her in her bathing suit quickly and brought her in the pool!First Brian took her into the water - he let her toes hit the water, and moved her legs back and forth to feel the water go over her feet. She seemed to really like it!

Daddy takes Meagan in a pool for the first time!

 Then I took her and walked around the pool with her a bit, getting her hair wet, splashing a little water on her face gently, and letting her hands and feet feel the water again.  She seemed to have fun!

Mommy's turn!



After everyone cleaned up from the pool, Brian and I took the girls down to the river to the Minor League baseball stadium.  We wanted to take them somewhere fun - and this was perfect! Tickets were only $5 and kids under 7 were free! That was like hitting the jackpot for our family! We got to the stadium - I had Meagan in her stroller but was worried we wouldn't find anywhere to sit with her.  We don't have any sort of handicapped stickers for her yet, and she still fits in a stroller, but I didn't want to hold her the entire game - it was so hot and even though she is a fairly light weight for her age, in the heat, and with the dead weight of her body, it gets rather heavy and way too hot for her to last the whole game.  Luckily, they were VERY accommodating at the stadium! They got us some seats right behind home plate where there was a good space to put Meagan's stroller right up next to us in the shade! Perfect!

Great seats!

Meagan couldn't take the heat very well!

The kids had a ball at the game.  Kaitlin had to get her picture with the mascot (of course), and there was a great fireworks show afterwards for the holiday weekend, which was a nice surprise for the kids! Maura cried through most of it, but Meagan didn't seem to care one bit there were loud fireworks going on!

Kaitlin with the mascot.. and Reilly trying to hold in the rest of the girls for the picture! 

Meagan woke up for the fireworks - but seemed thoroughly unimpressed. haha

The next day, we had intended to take the kids up to a big park at one of the mountains there in Chattanooga.  But it was going to be a scorcher again - and Meagan, although doing well, seemed to be really affected by the heat.  So we re-evaluated and decided to take the kids to the Tennessee Aquarium instead.  It turned out to be a great decision because 90% of the displays were inside where it was cool and out of the sun.

Views from the Aquarium

The girls loved seeing everything!

Meagan really seemed to enjoy the indoors - the day before, she was ok but very tired and hot from being outside.  She basically slept the whole day -- on Monday at the Aquarium, she was quite the opposite! She was awake about half the time, seemed to look around at things (especially the big lit up  tanks and the glowing jellyfish displays!) , and she was even cooing and making a ton of noise as we walked through the exhibits.



Wide awake and ready to explore!

 The older kids also had a blast seeing all their favorite river and ocean animals.  We spent a few hours looking at all the interesting fish, sharks, turtles, penguins, and many other water animals they had in the aquarium, and then we decided to head home to Atlanta.

All in all it was a great weekend! We all got a MUCH needed 'escape' from the house, and stayed close enough to town where it was a quick and easy trip for us all.  Meagan really seemed to enjoy her first "real" vacation! Even though it was only a 1 hour drive, being a world away for a few days really helped us recharge as a family!

The aftermath of a family getaway

What A Life

Life sure is "tough" for my girls (read with sarcasm) .... on a daily basis when there is some "down time," this is mostly what's going on at our house:

Meagan sure does love having big sisters.  She is so SPOILED! And they sure love having a baby to snuggle everyday!! 

A snuggle AND a foot rub. :)

The Big Picture

Sometimes this process is crazy because things seem to go so slowly.... but then other revelations come to me instantaneously.  And this is what has happened to me over the last few days.

Ever since my vent the other night on Meagan feeling so badly, I felt like I almost did a 180.  Like I was suddenly "ok" with the process we are stuck in.  I felt relief from being able to share my words and my fears... but at the same time, I realized I was missing a huge part of Meagan's story - her family.  While I love this blog to update all our friends and family across the country and beyond of how she is doing and what her latest struggles and accomplishments are, I also realized a large part of her comfort during struggles, or encouragement during accomplishments are directly from her family; sisters, mommy, and daddy. And yes, sometimes, her lovable lab.  So I think this is an important transition in Meagan's story.  Or, I should say, an important piece of the puzzle for readers to truly understand Meagan's story.

Meagan enjoying the day hiking with her sisters

I've been thinking about this for a while.... but always came back to just updating on Meagan because of that being my original intention.  But as she gets older, my girls and other family and friends are so intertwined in many of Meagan's stories, I realized leaving out those stories leaves out a piece of Meagan's story.  Then yesterday, we took our girls to a playground.  It was very hot outside, so we told the girls we'd get them some ice cream on the way home.  The girls all chose to sit at the window counter....and then it hit me as I was looking up at them.  The big picture.  My 4 older girls, sitting there laughing, enjoying ice cream, and sharing stories... and I realized... they ARE Meagan's stories. They are the ones she will look up to... they are the ones she looks at each day... they are the ones that are constantly snuggling her, smiling at her, and trying to help her grow. As I watched my girls enjoy their ice cream treat, I could almost see Meagan sitting right there next to them one day,talking and laughing along with them.

Ironically, the Homily at Mass today was extremely relavent to what I'd been thinking about.  In the Homily, Father talked about getting so caught up in details of a situation, that we miss the main message. It really struck me because while detailing Meagan's updates is very important, I also don't want it to cloud the overall message of hope. I thank God everyday for being Meagan's mom, but I have to also remember that Meagan's life isn't just a gift to ME.....she was born into a FAMILY.  A family that has a dad, 4 big sisters, and many other friends and family members that love her. A family where we love each other very much... and where Meagan's gift of life has not singled her out, but rather led her to bond us so much closer - as a family unit.

Daddy and the girls celebrating - we made it to the top of the mountain!

So while Meagan's updates will continue to be the main points in the blog, her experiences as a member of our family will be the glue that holds it all together.  Hydrocephalus is an unknown journey and a worrisome one at that.  But it's the family that makes it bearable.... it's the family that makes every struggle "ok" .... and the family that celebrates every triumph Meagan will accomplish.


So here's to you Meagan for once again showing Mommy the "big picture."

(And by the way, she is feeling MUCH better) :)

A Kiss and a Curse

I want to preface this post by saying I'm of course very thankful for Meagan, for her being here, for God's gift of her life, and for all the surgeons, doctors, nurses, and technology that allows us to keep her here with us. I honestly wouldn't change a thing.  She is who she is meant to be and God has a reason for all He gives us.  But sometimes, as a Hydro parent, I just need a good honest vent.


These last 10 days have been rough for Meggy. It all started a week ago Tuesday when out of nowhere, she became lethargic and grumpy.  Within an hour, she had a 103 fever. I gave her Tylenol because she was obviously uncomfortable.  When it jumped to 103.8 two hours later, I started to panic a little bit.  She had NO other symptoms - no sniffly nose, not even a sneeze.  I called her Pediatrician and she said to bring her in.

Not herself

After a thorough check up and some blood work, our Pediatrician said we would have to go to Children's.  She said Meagan checked out fine everywhere as far as ears, nose, throat....and she gave her a Strep test "just in case" (because she's really "too young" to get Strep)...and even that was negative.  They did a quick CBC (blood count) and her white count came back high.  She said it would be best to go to Children's, where they could do more extensive blood work.  I agreed because with such a high fever, and her being out of it, and NO other symptoms, of course automatically one thinks "shunt." ... and the last thing we'd want is a shunt infection.

So we went off to Children's ... she was still "blah" (don't you love my technical terminology) and still feverish.  She was whimpering and obviously not herself.  They drew blood and sent it off to culture and also for another quick blood count to look deeper.  They wanted to see what the underlying cells were reading with her white count being high.  After a bit, the doctor came back in and said though her white count was elevated, the underlying factors were all normal.  They would watch the cultures, but as far as he was concerned, she could go home. The good news was no apparent shunt infection.. but the bad news was we had the "non-answer" answer.

Waiting at the Pediatrician

I took Meagan home.  She was miserable.  Her fever eventually went down to 101 and then kept popping up and down for the next 6 days.  She wouldn't smile... her eyes seemed sensitive to light and she became VERY fussy when I would change her position from laying down to sitting up, or vice versa.  She also was sensitive at times to me touching her head - something that has NEVER bothered her.  On Monday, when I was holding her one time, I leaned over to kiss her forehead and she screamed like I had pinched her.  With these happenings, fevers still going up and down and still NO other symptoms, I decided to call the Neurosurgeon.  He said to come in and we'd do a CT scan to make sure her ventricles still looked good and this wasn't a shunt functioning problem.   This had crossed my mind because of all her head sensitivity and her eyes being so squinty, so I was anxious to get to the appointment.

Tears in her sleep

Obviously in discomfort

Wednesday came quickly and we went down to Children's for Meagan's scan.  She did wonderfully through the scan, in large part because she didnt' feel well so she just laid there for the whole thing.  We walked across the street to Dr. R's (Neurosurgeon) office and waited to see him.  Once we got back to the room, Dr. R could clearly see something was off with Meagan.  Her eyes were glassy and wouldn't open fully.  She just looked like she was miserable, in pain, or not herself.  He looked at her scan and actually did a little jump and clapped.  He said as far as her ventricles and brain looked, he didn't think anything on the inside was causing her discomfort, at least visibly.  He said her ventricles looked good - the fluid levels had continued to decrease, and so the shunt was still working properly. He was sorry he didn't have more answers for us, but who does in Hydro honestly.  So we headed home. 

Of course, later that day, I heard Meagan cough a few times.  I didnt' think anything of it.. but then that evening she REALLY coughed.  When she woke up, I noticed she couldn't open her eyes because they were "glued" shut with green and yellow goop and she just looked like a mess.  The cough continued to worsen and I felt so badly she was so miserable! She still had fevers cropping up daily and was obviously still not feeling well.  I decided to take her in to the Pediatrician to just double check her lungs.  Her lungs checked out clear at the Pediatrician's office, so we went home.

It is pretty sad when your child finally develops a nasty cough and gross eyes... and you are actually happy about it.  But I'd honestly take almost anything else over a shunt infection or malfunction.  Both are serious issues and require brain surgery. Again.  So while I was upset at not having "THE" answer as to why she has been so uncomfortable, I am also happy it is not her shunt.  The best explanation I can come up with in hindsight based on all her symptoms, the fevers, and the eye/head sensitivity is either some sort of random headaches associated with a virus she's fighting, or some sort of lingering sinus infection, thereby making her head and light sensitive and cropping up fevers while her body fights it.

So head and light sensitive

These last 10 days have definitely brought me back to the reality of Meagan's situation.  Hearing of other Hydro children losing the battle and dealing with miserable Meagan with all the "what ifs" going through my head.....  Everything with Hydro, it seems, is a "non-answer" answer.  Everything is a guessing game.  And every time your child gets a sniffle, a cold, a fever, or just starts acting "off" or miserable, you never again blow it off as a virus or just an off day.  You never again are OK with "waiting things out."  Every time something happens, your mind immediately jumps to "Please let it not be her shunt."

 It may seem silly to some, but I know my fellow Hydro moms and dads know exactly what I'm talking about. There is literally 6 feet of plastic catheter tubing in Meagan... keeping her alive.  ALIVE.  This is often something I don't think about, nor focus on.  But with the events of the last few weeks, hearing of other children losing the fight, and having others, while well intentioned, telling me "at least the worst is over.....she had the surgery so she's fine..etc... all of these things have really made me remember just exactly what we are dealing with here.  So when Meagan gets sick and the danger of shunt infection crosses my mind... .or she starts acting off or doing poorly at therapy and the thought of a shunt malfunction crosses my mind... it is very real.  It's not "over-worrying".... and not being crazy overzealous parent. It is what it is when your child, very literally, relies on a small unreliable man made device to live everyday.

It's a very strange and unnatural relationship I have with Meagan's shunt.  I want to preface by saying I am not at all ungrateful...for without it she would not be here. I am thankful there is a way to keep her here with us but I feel the need to vent for the reality that it is or I wouldn't be being honest with myself.  It is definitely a strange existence.

 Each day, I curse that thing - the pain and discomfort it can cause her... the high failure rate.... the lack of a better treatment (yes, I said  treatment... Hydrocephalus is INCURABLE) .... I just want to tell it off sometimes, like during these last 10 days when Meagan has been miserable and shunt worries were high on the list.  Then, almost instantaneously, I do a complete 180 and kiss it.  Yes, kiss it. Literally lean over to the side of Meagan's head, and kiss that shunt valve.  For without it, I know she would have no shot at life... she wouldn't be here at all. 

Yep, that squigly thing along the side of Meagan's head behind her ear is where I kiss that shunt.

And so, here's hoping my Meagan is more herself this weekend and gets out of this 'funk' the best she can.  She will continue on...... this journey she so bravely endures.  And I will be right there... I'm sure there will be more days I have a kiss and a curse for that shunt.  But... because I love Meagan so much, and am so grateful for the gift of her being here, I will try to minimize my curses...... and give mostly kisses to the most awful and beautiful 6 feet of plastic I've ever encountered.

Miserable Eyes

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.