Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Sunday, December 30, 2012

Breath of Heaven - Christmas 2012

I know I have said many times how thankful I am for the gift of my family and my children.  And it is true - they are certainly a gift.  But what I've started to realize is that the gift is not by happenstance.  Not by a fluke.  And most definitely not by chance.  The gift of my family was the plan.  I didn't choose to have children - God chose me to be their mother.  This is what makes children such special gifts to us.  They are not only given to us by God, but we are also chosen at the same time to be the guardians of these gifts.

Playing with Pop Pop

I found myself pondering this a lot this Christmas season. I began to again contemplate what Mary must have felt.  Out of every woman in the world, God chose her to carry His son. To continue His plan.  To most importantly, be Jesus' mother.  I think, likewise, it is no accident we are parents to the children we have for a reason.  I wasn't only blessed with my girls. God actively chose me to be their mother.  I didn't happen to have a child like Meagan.  God knew, for some reason, I could do it  - and he chose me.  Thinking about that humbles me to my core. 
Loving Nana's Christmas lights necklace

Christmas this year was great at the Gareau household.  My parents were here.  My grandmother was here.  My brother and his wife were here with their son.  All of us were together.  We spent time talking, visiting, and watching the kids play.  We attended Christmas Mass together and enjoy each other's company by relaxing in the evenings with a good movie and some beverages. We also exchanged gifts, as many families do, on Christmas morning. Everyone had a great time.

Helping Meagan explore her new toy

I found myself thinking of last Christmas.  Meagan was newly home, and  I know I thought a lot about what a miracle she was, and rightfully so.  But this year it hit me how I was chosen to receive this gift. How was I entrusted with such a miracle baby?

 Just as we lovingly choose gifts at Christmas for our loved ones, God chooses us for our children.  He knows the perfect match.  As He chose Mary to carry Jesus, he chooses us to carry our children.  I keep going back to lyrics from a song I love... part of those lyrics say, "Do you wonder as you watch my face......if a wiser one should have had my place..."  No.  I think I'm right where I'm supposed to be.  No one else could be Meagan's mom. This was the plan. This was God's plan for us.

 The girls decorated their little tree

This Christmas, I want to pause and say "Thank you" to God for choosing me.  Thank you for carefully choosing the gifts of my girls, and for entrusting me with them and the special gift of our youngest baby girl. Tonight, as the tree lights are dimly lighting up our living room, I finally find time to think. The girls are in bed.. the house is quiet.  Meagan is asleep and all I can hear is her tiny breath as she peacefully rests in my arms. 

In the background, I can hear more of those song lyrics resonating in my head.....

  "...Breath of heaven,
Hold me together,
Be forever near me,
Breath of heaven...."

....And what a breath of heaven she is.  Merry Christmas.

Loving on her Elmo

Santa brought Meagan an Exersaucer to use for therapy

First taste of chocolate

Merry Christmas to all!

Wednesday, December 19, 2012

Neurology and Neurosurgery update

Meagan has had so many appointments over the last few weeks....most of which were due to the ears/strep/flu concoction she managed to pick up.  However she did have a few Hydro-related appointments as well.

First was her Neurology follow up.  This was a planned visit.  We saw the Nurse Practitioner this time (whom we love!).  She was so sweet - went over all Meagan's history again, her progress, her problems, her seizures, her medication... etc..etc.. All in all, they were happy with her progress and that she seemed still "herself" and to not have any gross regressions as of yet.  I did ask her about Meagan's clenched and twisted hands.  She did a physical exam and said that Meagan still had low tone, so there was no sudden change in tone for her causing it.  The CNP said most likely it is due to neurological overflow.  In other words, Meagan is trying so hard to work on new skills, that when she is finally at rest (relaxing, sleeping or eating), her hands are over compensating by curling up or twisting because she's had "enough" input.  It made complete sense to me, and, I was glad to hear she thinks it's an overload issue rather than a complete change in Meagan's tone.

Today was her Neurosurgery appointment.  This one wasn't planned.  As we know, Meagan's head has been all different shapes and sizes over the last months, especially in the last several months since her cranial surgery.  I never worry at gradual changes... it's just her skull and the plates shifting, forming, and moving around as her head grows, fluid moves, and her skull bones settle in to place.  But she has remained fairly "full" in the last month and a half.  Finally she settled into a skull structure that seemed to stabilize and we started to see her head fill out in its usual empty spaces.  Fast forward to Sunday night.  Meagan went to bed as usual.  When I got her out of bed the next day, her head was like this:

... when just days before, it had been like this: (the top ridge is not the concern.. it is the two front spaces that had gradually grown and now have completely sunken in within 24 hours as in the above photos)

I wasn't 'too' worried, however, we have seen a few regressions in Meagan lately with her sitting and her hands.  We were working very hard on supported sitting and could work the entire PT session - for a good hour.  Over the last several weeks, we were held to 4 minutes max with Meagan in a sitting position.  This was very unlike her.  She had really come a long way and actually preferred being held to sit up rather than lay down and play. Now, we were going backwards.  However, I wasn't pressing for an appointment because she was still smiling, eating her bottles, and overall, her happy go lucky self.  Once the PT mentioned Meagan's change AGAIN this week, along with her sinking head that happened literally over night, I decided a quick email to the NSG with some pictures couldn't hurt.  Dr. R looked at the pictures and asked us to come in today.  

It's never a good feeling when the Neurosurgeon you trust and who always calms you acts nervous upon seeing your child.  He paced a little, felt around Meagan's head, looked at her and then stepped back.  He then got a chair, pulled it over in front of her, and sat there going "Hmmmmm."  Dr. R called Dr. W, the plastic surgeon that assisted with the surgery, but had to leave him a message as he didn't pick up.  Dr. R went on to explain that it is either a fluid issue we have, or a plate issue.  If it is a fluid issue, turning the pressure up in her shunt should help and improve her sinking.  If it is a plate issue, more fluid won't necessarily help and we may be looking at a bigger problem.  So he turned up her shunt pressure today, and scheduled another CT scan for 3 weeks from now.  He wants not only brain pictures but also another 3D reconstruction of her skull bones so he can see exactly how the bones and implanted plates are laying.  He said of course it's always a chance with Meagan because she has been so sensitive with pressure changes on her shunt.  He said he's never had a patient quite like Meagan.  I don't think that's surprising... she sure is unique and likes to make that known! 

I wasn't expecting this appointment today, honestly.  I thought it would be our usual "Oh, that is a plate dissolving"... or "oh that is the natural shift as her skull adjust" that we have been through so often.  This was different -  I'm glad I did email the PA and that they saw her promptly. 

So that's where we stand... we are hoping for a great CT in 3 weeks from now.  I'd much rather have to balance some fluid than possibly talk of going back in to fix some plates that have slipped or collapsed.  I'll be sure to keep everyone posted on the results!

Monday, December 17, 2012

Be Still And Know

Reilly had to write some prayer cards for school.  She was sitting at the table asking what to write about. I told her to write about whatever she thought she should pray for more often.  She thought a little bit, started vigorously writing, and then put her cards in her folder.  I asked her if I could see one. She told me, "ok but only one."  She pulled out the card and this is what it read:

Reilly is just about the sweetest thing ever.  But she is very 'old' for her age.  She's always been very involved with Meagan from day one.  She was the one who would ask technical questions, want to know what Hydro was, and always asks me each day "So, how did Meagan do in Therapy today?"   All the girls love and dote on Meagan in their own way...but Reilly is a little bit like her Guardian.  She plays with her, talks to her, encourages her, sings to her, and prays with her.

I don't know how I was lucky enough to be entrusted with these five little lives. I don't know how my oldest ended up being such a deep caring soul....or how her bond with Meagan is so incredible....or how she is constantly looking out for her baby sister.  But I do know that every time I am privileged enough to witness the kindness and love Reilly gives to Meagan, I can be still and know that God is near...for He planned their bond before they knew it existed.

Thursday, December 13, 2012

Oh Darn

One of the many blessings of Meagan's diagnosis (yes, blessings.. I like to think positive)... is that we met a great family who lives very near to us.  Their daughter is about 8 months older than Meagan.  I've posted about her here before - her name is Claire.  Their family has been an immense blessing to us - constant support, information, laughter, and friendship. They are a beautiful family and have taught us very well how to be fighters for Meagan and her care.

Well this flu season has just been nasty so far, and poor Claire is in Children's Hospital for some fluids and treatment for her bad congestion.  It may seem trivial to some, but, with all these kids go through, sometimes the most common ailments can just be down right yucky.  Meagan loves her friend very much and would like to ask everyone to send up a little prayer for Claire that she may recover quickly from the nasty old bug bothering her, and that she is well and comfortable soon enough to get home for Christmas!!

Meagan sends her hugs and love Claire Bear.  We hope you get well VERY soon!! xoxo

You can follow Claire's blog here:

***** UPDATE: Claire is home.. you can read their update here as they post it:  www.prayersforclaire.blogspot.com

Tuesday, December 11, 2012

Twists and Turns

While Meagan is fighting off the flu and strep, I figured I"d update on a 'new' development we've had with Meagan.  We were supposed to have her Neurology follow up today, where I was hoping to post about some possible answers to her new 'habit' but of course, with her being so sick, I cancelled it, thinking we wouldn't get much out of it with her not feeling well.

When Meagan came home from the NICU, she had very clenched hands.  This is not uncommon for babies in general, but especially those who have Neurological issues like Meagan.  We worked hard with her therapists to get her hands unclenched, and then to separate them. (She used to hold folded together all the time as a soothing mechanism before she could suck on a pacifier).  Ever since last March, we had a good handle on this.  She started to open up her hands a lot.  She started to use them separately  and began to grab toys and other people's fingers.  This progressed rapidly, and before we knew it, grabbing things was one of her best skills.

From March until this November, Meagan would grab just about anything.  Toys, plates of food, people's hands, hair, or earrings.  The list goes on.  Just in the last 3 weeks, I started to notice something when Meagan would sleep.  Her hands would do something like this:

It started in one hand....

...and is now in the other too.

I didn't think much of it, as things come and go with Miss Meagan all the time.  But then I started to notice even when we were playing, her hands would sometimes curl.  When grabbing for toys, where she would 100% of the time get the toy, she started to only intermittently grab it, and the other times, her hand would curl or clench and she would only hit the toy.  Then one night she was sucking on her pacifier.  It fell out of her mouth.  Normally, she would reach up, grab it, and either bite on it, or try to put it back in.  Instead, her hand curled inward.  The same thing happened when having her bottle.  If the bottle moved, or seemed like it would drop, her arms and hands would curl rather than open and reach up to grab it like she normally would.

Meagan won't hold her bottle anymore

If I move her bottle like it will drop, instead of reaching for it, her arm moves up slightly but no grabbing for the bottle.

Noticing it happening more frequently, I decided to watch it closely.  I didn't say anything to her therapists or her doctors yet, though, because I never know with Meagan if I'm truly seeing something "new" or if I'm just over-analyzing something that is a new quirk .... her "new normal."

Our OT came about a week ago to work with Meagan.  She said to me "What's up with Meagan's hands?"  I was kind of relieved she said something because it made me realize what I was seeing was in fact something "off."  I told her I had no clue, but I'd noticed it first when sleeping/relaxing....and then it had moved to eating, and even times of play or snuggling. It also started out in one hand and is now in both. She suggested perhaps she is getting some new spasticity in her muscles, but also was concerned we have a new Neurological issue going on.  She was glad to hear we were following up with our Neurologist this week and told us to ask him about it.

So, of course, we had to cancel the appointment because of Meagan being so sick.  But I'm hoping we can reschedule soon.  I'm a little concerned because it is such a new thing for Meagan..almost going "backwards" with the use of her hands, which has been one of her strongest skills.  At the same time, she is working so hard on rolling and really starting to get a lot of head control, so I'm wondering if she is just getting some spasticity through her hands now because of so much going on elsewhere in her body. I'm not worried about any general regression because she still smiles, babbles, and will play with toys sometimes.  It just seems like perhaps she is having a muscle spasm or messaging issue when trying to use her hands "on demand."  I do want to stay on top of it since it is new, and to make sure there is no Neuro cause for the change in her hands.

In the meantime, her OT has been great and ordered her a splint for her hands so we can work on keeping her thumb separated and retain her grabbing skills.  Hopefully the Neurologist will have a little more insight on this once we get to see him again. I will of course update when that happens!

Monday, December 10, 2012

Two Turtle Doves?

On the 8th day of Advent, flu season gave to me:

Reilly testing positive for Influenza...... 

Maura testing positive for Strep.....

......and Meagan testing positive for Strep and Influenza.

All I need is a Partridge in a Pear Tree, and I think we're good! (though I'd rather have the 5 Golden Rings)... 

In all seriousness, I hope my girls feel better soon.. and that Kaitlin and Anna, the two "survivors," do not get any of this! I will be watching Meagan especially close. She has so much going on, Strep and the full blown flu are the last things she needed! I hope it passes quickly and with no complications. 


*****Edited to add that Reilly, after a week of fever, is feeling much better.  Her fever broke today and she is now working on catching up on homework.  Kaitlin has still stayed well.  Anna didn't look good today and I think is now coming down with the flu :(  Maura is 100% better from her Strep.  Meagan is still MISERABLE.  She's very congested, down on her feeds, and very irritable, so I'm watching her closely.

Tuesday, December 4, 2012

How Low Can You Go

No, we are not having a Limbo contest at our house. Although, it might be a lot more fun than a fussy baby! The last week or so, Meagan has been a lot more fussy than usual.  Early last week, considering her bad mood and fussiness, I took her temperature.  It was 100.8.  I thought "oh great, she's getting sick."  Later that day, she was very clammy and sweaty - I felt her head and she felt cool.  My initial thought was that her fever broke.  No big deal.

That night however, when I got up to feed her, she felt piping hot.  I took her temperature and it was back up to 101.  She had no signs of a cold or anything else, so I chalked the temp rise up to teething. Early the next morning, I heard her breathing heavily. In, out, in out very rapidly.  I looked down at her  and noticed she was shivering.  I reached down to pull up her blanket and felt her skin. It was like ice.  I took her out and changed her diaper so I could take her temperature again.  95.8.  I double checked.  Exactly the same.  I wrapped her up in her jammies again and a warm blanket and snuggled her up next to me.  None of my other children had ever had such low temps.  I thought it was strange as her normal temperature seems to hover around 99, but, she seemed to be snuggled in now acting ok, so I went to sleep.

This pattern continued throughout the week.  101 fevers, down to temps below 96.  Even times where normally she'd be hot and sweaty, like coming out of her carseat, I found her skin freezing cold and an extremely low temperature every time....only to bounce back up to a 101.3 fever only a few hours later.

Someone was not happy about feeding therapy - well no wonder! I wouldn't be either feeling yucky!

Meagan's Pediatrician called on Sunday, just to check on how she was doing (from a previous bad rash she had).  We chatted a little bit about Meagan's recent temperature issues and her fussiness and she advised to go ahead and come in this week so they could possibly do a blood panel and make sure they hadn't missed anything with the rash.

So into the Pediatrician we went today.  Meagan's temp, once again had started out at a 101 fever, followed by an extremely low temp in the 96's and back and forth.  At the appointment, the doctor was checking over Meagan and upon looking in her ears she gasped.  She said Meagan had a very bad ear infection.  I was shocked! So was the doctor! She said Neurological patients like Meagan can sometimes have extremely low temperatures when infections set in, unlike typical children that spike a high fever.  She immediately put her on antibiotics, and said her temperature should regulate in about 3 days.

I am very glad we have a 'simple' reason behind Meagan's fussiness and temperature instability this week.  I'm also very thankful for a thorough and attentive Pediatrician.  Though I'm sure a Limbo party would be a lot more fun than a screaming baby, I'm just happy we aren't in 'answer limbo' anymore this week. (that's a rarity!). We also have another 'clue' in handling Meagan's care - besides a typical fever, now likewise if her temperature starts to dip really low or  fluctuates between two extremes, we know it could be a lingering infection and to take her in to be checked.  Hopefully my happy girl is back in no time once the meds kick in!

Sunday, December 2, 2012

Just Mine

With the Christmas season upon us in full force, I've started to turn on some of the seasonal music that I enjoy listening to each year.  I heard a song on the radio I hadn't heard before - called Joseph's Lullaby.  There was a lyric in it that caught my attention:

I believe the glory of Heaven
Is lying in my arms tonight
Lord, I ask that He for just this moment
Simply be my child

It made me think of all the nights my kids will wake up for various reasons.  My first instinct, most of the time, is "how do I get them back in bed the fastest way possible?"  This is understandable.  As parents, we are busy.  We have many things going on...possibly work..possibly a personal struggle...possibly a child with needs..or any combination of reasons.  We finally crawl into bed at some late hour, knowing we will be up early the next morning...and then we hear it - the cry.  Our first thought is "ughhh" at getting pulled out of our warm bed...out of our much needed sleep to go tend to the little ones.

In the grind of life, these interruptions by our children seem trying.  It seems like "really.... one more thing?" I know I have certainly felt this for the last 10 days with Meagan waking in the night, having on and off fevers, refusing certain feedings, being fussy...it has definitely been a sleepless week for this Mama.  After hearing this verse from Joseph's Lullaby, though,  I started thinking about how he must have felt.  Knowing his child was born only to die to save him from his own sins.  What a bittersweet moment for a new father.  And at the same time, what a selfless moment for a new father.  I wonder...did Joseph dread those moments when baby Jesus woke in the night? Did he dread the little interruptions that happen with a young child? I'm sure, at some point, he was only human and did have those feelings.  But I also think Joseph must have cherished every moment, and literally, every moment, knowing what his Son was destined to be for the world.  He knew his Son would not always be just his own.

This Christmas, as I'm blinded by lights, advertisements  and ornaments in the stores, I have to remind myself that first, it is Advent.  First, it is a time to prepare.  We don't know what may come tomorrow, and yet we want to rush through those trying moments that seem a little too much to handle. I think Joseph's Lullaby is an important Advent lesson - enjoy every moment with our children.  They are all destined for great things....but we do not know what those great things are.  Only God does.

I was on the brink of losing my patience a few nights back...it was the 10th day Meagan had been unbearably fussy, my older girls were very tired and bouncing off the walls, and I had been going non stop all week between house chores, bill paying, and rehearsing for our Christmas concert.  I was in the kitchen cleaning up and listening to all the noise build in my house.  Just as it was starting to really push me to my breaking point, I looked over to check on Meagan and saw this:

I literally took a breath upon seeing her.  She almost appeared to be praying.  God gave me the momentary reminder I needed to soak up the moment rather than be annoyed by it.  He was reminding me to prepare.  So the next time one of my girls awakens with a bad dream, or Meagan cries in the night, I will try to be more patient.  I will try to prepare myself in that moment, for the day when those moments will no longer happen

Tonight I plan on giving my girls a little bit longer hug before bed.  I plan on holding Meagan a little longer.  And even if she is up yet again, instead of thinking about my lack of sleep, or the annoyance of being awakened in the night, I will try to instead enjoy the silence of us together.  That moment when she is surely, just mine.