Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Sunday, September 30, 2012

Back We Go

Saturday morning started off pretty normal.  For once, we had NOTHING to do the entire day.  It was awesome.  I was looking forward to finally getting through my mounds and mounds of laundry, catching up on bills, and other chores, and spending a lazy day with the family.

The first odd thing I noticed was Meagan sleeping in.  She was kind of tired and wasn't waking at her normal time.  The second thing my husband noticed was Meagan's head - the normal large "crater" in the front of her head was completely filled.  This was not normal for her - especially considering she sleeps at an upright angle all night.  Meagan did nurse but then wanted to sleep again.  She was fussy and cried here and there.  I noticed more purple stitches coming out of the top of her head, leaving behind small blood mark and some of the incision spots oozing blood.

Later that morning when I went to check on her, I put my hands on her hands - they felt like fire.  I thought it was strange even her fingers felt so hot, so I took her temperature.  101.6.  Definitely a fever, but, nothing I was too worried about. She was obviously uncomfortable so I gave her some Advil.  A little while later, I felt her again -she was burning up even more.  This time the temperature was 102.7 even with the Advil, so I started to alternate the ibuprofen and acetaminophen   Her fever still did not break.  She was inconsolably fussy.  I was only able to get 4-5 ounces of fluid in her all day.  And her head was still puffy after being upright the entire day.  I knew at that point a trip to the ER was warranted.

We got to Children's around 9pm on Saturday night.  Meagan was fussy and crying the entire time.  They were very good about working us back quickly.  The doctor checked her out and saw the swelling on her  head and how irritable Meagan was.  The doctor also took her temp, which was still 103.  They did bloodwork, urine samples, and got a CT scan to make sure we weren't dealing with ballooning ventricles.  Meagan was absolutely miserable! The nurses went ahead and got an IV started to give fluids because Meagan was obviously very dehydrated.

Not a happy camper

The blood and urine results came back pretty much fine. The CT scan showed no major change in her ventricles.  The doctors were puzzled by her puffy head and her intense irritability.  That along with her nonstop fever was enough for them to admit her.  They didn't feel comfortable letting her go home in such an uncomfortable state.  Not to mention, she was having no wet diapers, so at the least she needed fluids.

We got up to our room around 3:30am.  She was still a mess and I was tired so I laid down with her. She fell asleep finally around 5am.  About 7:30am the Neurosurgeon on call came to see Meagan.  He agreed her head was very swollen but with the blood work and CT scan looking ok, and the fact that the area was still soft, he was in a "wait and see" mode.  One idea the doctors were throwing around was the possibility she has some sort of nasty virus causing the high fever (even though we don't see any other symptoms) and perhaps her body is reacting to the stress by becoming more swollen at the easiest source - her huge soft spot. Even though it's not normal for her, maybe this is the culprit. Or perhaps we have caught a brewing infection early on.   He didn't like the fact that she has been intensely irritable,  and noted the sensitivity she had to her head being touched, which were two uncharacteristic things for Meagan.  That and the fever starting to spike up again was reason enough to keep her another night.  They felt it was in her best interest to watch her closely and narrow down the cause of her discomfort, or make sure the fever breaks and she returns to her normal happy self before she gets discharged.

Resting finally

So that is basically where we are.   She is still very irritable.  She is better today, as far as having calm moments, but she is NOT my happy smiley Meagan.  We watch her tonight.... the fever has been as high as 101.7 again tonight, but has not reached the 103 it did last night, so hopefully we are on a downward trend.  I'm not really sure about the head - my 'mommy gut' says that her head is hurting her...she is wincing when it is touched, is light sensitive, and is hitting her head to fall asleep. It very well could be something as "simple" as a horrible headache from the fever. The good news is, as of this afternoon we FINALLY have wet diapers.  So the fluids are doing the trick in that area.  Diapers had been completely dry through lunchtime today.  I'm going to stay positive and anticipate my girl will be feeling better in the morning. I really miss my other girls.  I also felt like I was just getting caught up after Meagan's surgery and now will fall behind again.   Meagan's regular Neurosurgeon (Dr. R) should see her tomorrow and decide where we go from there. Hopefully it'll be home.

Taking care of my girl

Thursday, September 27, 2012

Appointment week!

It has been quite a busy week since Meagan's birthday! A lot of doctor's appointments, therapies, and her 1 year well check.  Updates are below:

1. Shoulders: We were referred  an Orthopedist.  Meagan can play opossum with the best of them at therapies... but... whenever her arms are pushed above her shoulder level, she cries.  And I don't mean fusses because she doesn't want to do it.  She cries. And winces.  It is like she is in pain or extreme discomfort.  Her Pediatrician wants us to follow up because she feels something may not be right with Meagan's shoulder joints.  She said it's very possible it is "normal" for her range of development, but, it is best to get it checked out before the therapists push her past the point of pain.  Meagan's PT also weighed in telling me that kids like Meagan don't weight bear on their arms like typical children, so their muscles around the rotator cuff may not be built up properly. Therefore, some "popping" and "grinding" may be felt/heard due to the lack of strength and muscle tone.  But, nonetheless, it's still good to have the Ortho to give us the "ok" to continue to push Meagan's range of motion, so we are sure we aren't hurting her as we continue with her therapy. We don't want to unintentionally be creating a new problem for her.

2. Hearing: Meagan failed parts of the hearing test in both ears.  They ran the test twice just in case and came up with the same results.  I know she can hear because she does answer to my call, her name, and also to some of her noisy toys ... but there are some times where I feel she is staring and doesn't hear me. I don't know if those are seizure moments, or truly her not hearing certain tones.  She does react to us when we 'drum' on the floor or make some sort of vibration on her playmat where she will then turn to our attention, and she actually loves anything that makes movement or vibrations.  More than anything, I feel this is just a "follow up" to get a really "true" test on her hearing and how well she does.  It will be interesting to see if they want to order a new test, or just watch and see.  I'm almost positive the secondary test will come back fine based on Meagan's behavior and reactions to noise, but, either way, at least her Pediatrician is on top of things and we will have certain answers after a few more in depth hearing tests.

3. Weight:  The basic theme of the appointment was really Meagan's weight.  This isn't a mystery nor a surprise to me (or anyone who has been following Meagan's story), as she's always been slipping behind the curve in weight.  We met with the GI doctor last month, where he prescribed an appetite stimulant, and also had us "pack" her bottles with more calories to try and put weight on her.  Here we are after almost a month of those methods, and Meagan has dropped weight again.  For the first time today, her Pediatrician brought up the possibility of using a G-tube.  We aren't actively going down that path yet, but, if at her next weight check in 4-6 weeks, Meagan is showing no improvement in weight, or in her feeding therapy, it will be time to go back to the GI doctor and talk seriously about the placement of a G-tube.  Meagan is "tolerating" feeding therapy, but, she has a lot of sensory and developmental issues that are blocking her from "properly" eating solid foods.  She can get about 5-10 teeny tiny "bites" of food off of a spoon with her feeding therapist.. but, this is nowhere near what she needs to sustain herself especially as she enters into toddlerhood.  I am so happy she's showing "some" interest in food, however I just don't know where that will end up in a few months from now. Dr. B also feels that the rate at which Meagan eats her bottle could start to contribute to her weight loss.  Meagan takes a good 20-25 minutes to eat 3-4 ounces out of a bottle, no matter the bottle type or nipple.  As she is trying to grow, and slows in her bottle eating, she's almost wasting more calories just to take that long to drink the bottle - therefore, she's not getting the full calorie intake from the formula.
 I'm happy Meagan's Pediatrician (Dr. B) is not an "alarmist," and that she is staying on top of Meagan's weight issues.  I also appreciate Dr. B discussing openly with me the possibilities of what we could be facing this year regarding Meagan's eating, but acting like it could just be the next step in her development.  So we will see how feeding therapy continues to go...and if no improvement in another month, we will definitely be back to the GI doctor to seriously discuss G-tube placement.  My main concern is not how Meagan gets her calories, but that she gets enough to grow and facilitate her therapies.  I also don't want feeding to be a negative experience, so if a tube means she can work at orally eating on her own schedule, and take her own time to build up her calorie intake, it will be what we need to do for her.  It is important to me Meagan gets her proper nutrition, and feels full and satisfied.... it is not important to me the method by which we accomplish that.

4. Plastic Surgery post-op: Meagan had her first post-op appointment with Dr. W.  It went pretty well.
My only "pressing" question for Dr. W was really about Meagan's incision.  It looks great overall, and is healing nicely.  The outside stitches are starting to fall off, and all looked OK to me up until a few days ago.  I noticed an area 'puffing out' on the top of her head. I could see into her incision, and coming out of the hole there was a thick purple thread.  Dr. W looked at it and said it was part of a suture used deep inside her head. Somehow, it had found it's way out.  He said those stitches should have dissolved, and this one still could.  Not sure why it found its way to the top of her incision, but it did.  He said to keep the area clean, put antibacterial ointment on it, and we will watch it.  It doesn't happen all the time, and it's not ideal when it does, but, it does happen sometimes, and Meagan is one of those "sometime" it seems.  He said as long as other areas don't show up, it should be ok.

Well, of course this afternoon, I was feeding Meagan and noticed this:

So, now we have two areas of purple stitching coming out from deep inside her head.  I hope these are just flukes, and not a sign of her body not dissolving them, but rejecting them and finding any way out of her head that it can.  We will keep watching it, cleaning the areas and I will re-ask the Neurosurgeon at her follow up early next week.  I did put in a call to Dr R's nurse just as a precaution, and she said it "should" be fine, but to just keep an eye on it.  I'm sure it'll be fine, it just looks pretty bad and strange!

I was also 'amused' by Dr W's assessment of Meagan's head.  He was actually rather shocked by the appearance in the front section.  It is extremely sunken and very bumpy.  He said he really did not expect that outcome at all.  Of course, I was kind of giggling to myself because all I could think about was my post about missing Meagan's head ridges... well they are baaaack, and with a vengeance. Haha.  I told Dr. W... "It's ok.. the goal was head space for brain growth, not a perfect head. I honestly hadn't even thought about it/"  He agreed but just added he didn't expect such a drastic "crater" effect in the front of her head.  I told him it was like when my kids build a tent with chairs.  If there's nothing holding the sheet up, it sinks.  Just like Meagan's head.  Between the now split apart bones, if there is no brain tissue right there to hold the skin up, then there isn't.  Not much we can do about that! Dr. R may turn up her shunt next week and see if she can go back to the higher setting she was on pre-surgery.  If so, then some fluid build up should help push some of that skin outward. Hopefully it does a little bit as some of the craters have become quite a bit prominent.

Overall, the rest of Meagan's check ups went very well this week.  She got her 3 vaccines, including her flu shot, and didn't even cry.  It didn't surprise me with what she's recently been through.. Meagan probably thought " what?... everything I've been through ... a shot doesn't phase me!" :)

We will go back in a month to check Meagan's weight and re-evaluate her eating habits, and go from there.  So proud of my girl.

Monday, September 24, 2012

The Birthday That Was Meant To Be

One year. 365 days.  It is the only measurement of time I know that feels slow and like it's flying by all at the same time.  It's amazing to think where I was one year ago at this time.  I had just given birth to Meagan by c-section.  She had just been taken from me to Children's Hospital.  That first night, I broke down for the first time and cried inconsolably.    I remember chatting with my good friend on the computer, talking about my uncontrollable emotions I was feeling.  I remember telling the nurse to remove the catheter because I knew, damnit, that I wanted to get up and walk already so I could work on being discharged from the hospital as soon as possible.  I remember pain, anxiety, and loneliness..... not the physical pain.... but emotional .... looking next to my bed at the empty bassinet, and literally feel my heart hurt for Meagan's presence.  I remember looking at my phone every 2 seconds waiting for the next update or picture from Brian.  It was like breathing...I almost held my breath between texts from him as I waited miles away from my baby wishing I could be next to her.

What I saw of Meagan...from Brian's camera

Normally, at the end of a year we are happy we finish a grade in school ... or turn a year older ... or "make it through" that tough year only to look forward to the next one.  I'm pretty sure my perspective on "making it through" a year has completely changed thanks to my sweet girl.  She has accomplished more, comparitively, to anything I have ever done in a year.  Meagan had the odds stacked against her before she was even born.  She had no voice, no hope, and no life according to some of the doctors.  The fact that she was in my womb was her only saving grace; that and the fact that God gave me the divine strength to handle the pressures of our "perfect" world ... the courage to say "no" ... and the faith to move forward with a very uncertain path.

Holding Mommy and Daddy's hands for the first time

I am honestly in shock when I review Meagan's birth photos.  She looked just as I expected her to at that point, but knowing her now, and looking back, I realize just how far she has come.  I'm pretty sure if Meagan's previous doctors stayed consistent in their worldview, they would see a one year old who didn't hold her head up, sit, cruise, walk, or say first words.  But they are wrong.  They always have been.  Why should we look at what we cannot do as our focus? If we did that across the board, we would all be disappointed in our lives, and ourselves.  Why not focus on what we can do? Why not relish in the joy of what Meagan can do?  The little girl who doctors told me would do "nothing" is the happiest, most tolerant baby I know.  She coos, smiles, holds her toys, and I can now make her have a little belly laugh if I act silly.  She smacks her lips and kicks her legs.  She bats her hands on her diaper, smiling at the drumming sound she can make. She cries when she's hungry, and makes the most soothing sounds when she is cradled in my arms rocking to sleep.  She loves people. She knows how to "play opossum" at therapy and how to "pretend" to block everyone out.  She knows she is loved.

Arrived at Children's

Post- Shunt Surgery

NOW !!!

The following photos were taken by Claudia Landry Photography

I was sitting at my older girls' Irish dancing class last week and watching how well they were doing.  It made me flashback to the years I danced and competed.  In particular, I thought of my high school years, when I was at my "peak" dancing condition.  I had been consistantly moving up and was doing many shows with other dance troupes.  I also had great hopes for Nationals that year, and had been practicing everyday, along with taking several private lessons.  I was looking forward to possibly having a future in competitive dance, or even auditioning for some dancing shows.  I was even contemplating getting my teaching certifications. I just felt "on."  Any athlete would know what feeling I'm talking about.

At my last private lesson before Nationals that particular year, I was going through my dances one more time.  I was on my last run through, and my last leap in the air...when I landed, I heard a huge "CRACK!" ... then the pain. Pain.. and more pain!  I knew it wasn't good.  Turns out, I had broken my foot badly.  I was out of Nationals.  And my dancing really never fully recovered after that. It was such an 'interruption' in my momentum.  Likewise, I was at another crossroads at college graduation.  I was leaving with two Bacehlor Degrees from Xavier University...I had met Brian already. I just "knew" we would be married soon.  But I felt pressure to look into graduate schools.  I even went and visited a few.  Ultimately, I realized it wasn't what I wanted .. I was only looking in to it as an option because it was what I was "told" I "should" do next.  I decided to instead wait the extra semester for Brian to be done with his Graduate Degree so we could move forward and be married.  The decisions to not seriously pursuing dance, and deciding to not attend graduate school did result in some level of sadness. There was a tinge each time of a broken dream.  But now that I have my children, including Meagan, in my life, I realize these disappointments happened for a reason.  They led me to other paths. The paths I would take led me to Xavier University.... which led me to meet Brian... which led me to marriage... and led me to my 5 great kids.  If I had never broken my foot, and hence "broken" my dancing dreams, or made the difficult choice to put off graduate school, I may have not followed those paths.   And certainly, I would not be the mom of my kids today.  Perhaps some kids. But not the ones I have and love so much now. And definitely not Meagan. What a shame that would have been.

The following photo was taken by Claudia Landry Photography

As I think about events such as this in the past, even ones that I remember bringing me so much disappointment, I've started to realize they were all setting me up to be Meagan's mom.  No other child was meant to be at the same time as Meagan was.  She was planned. She was God's plan for our family.  The perfect gift from God.  He knew He could trust me with her care, and I am forever thankful He did. She has given my life perspective I could not have imagined, nor learned, from anywhere else.

My sweet Meagan,
You have come so incredibly far this year and beaten so many odds.  A hopeless birth, 2 brain surgeries, seizures, feeding issues, and everything else stacked against you has meant nothing - because with you as God's gift, you cannot do anything but beat those odds.  You fight everyday to just be yourself... and that will always be good enough for me, because in God's eyes, it is perfection.

Mommy loves you... and cannot wait to see what God has in store for you this year. Happy 1st Birthday from all of us .  This is a birthday that was meant to be....and you have certainly proven to be the priceless little pearl we all knew you were 

Events of Meagan's Birthday Weekend

The weekend started out pretty "normal" for us.... the rush home on a Friday, cleaning out backpacks, lunchboxes, and picking up the house.  I started to tackle the 4 baskets of laundry that hadn't been touched all week.  I was thinking about something we could do that would be special for Meagan's birthday.  Her party wasn't planned until October, just to give her a bit more time after surgery, so I was trying to come up with something fun to do.  The more I thought, the more I realized I wanted to plan something that my older girls would enjoy.  Meagan wouldn't care if we stayed home, or went somewhere of significance, so why not do something that my older girls would really enjoy and get Meagan out and about? After all, they had all been through so much this year..

It wasn't a minute after that thought when I got a phone call from Brian.  He said "Why don't we take the girls up to Tennessee?"  I said "perfect!"  Chattanooga is only about 1 1/2 hours from our house - the perfect little "getaway."  I almost told the girls, but then thought of how much fun it would be for them to be surprised.  As they slept Friday night, I packed our bags and secretly loaded them into our van.  We got up the next morning, got everyone dressed and rushed them out the door.  The girls were under the impression we were going to buy Meagan's birthday gift....and also run a bunch of boring 'mommy and daddy' errands.  They were troopers though and kept trying to behave based on the promise of a visit to the playground.  As we drove, the girls started to ask where we were going.  I told them we were going up North to a big warehouse so Brian and I could look at stuff for our house.  In their childlike innocence, they simply said "ok."

In about an hour and a half, we arrived at the base of Lookout Mountain.  They have a big incline railroad there that you can ride straight up the mountain - quite literally.  As we pulled in the girls squealed with excitement.  I said "Well, I thought errands would be boring, so why don't we go ride the train?"  Everyone was SO excited.  We parked and piled out of our van.  We got our tickets, and off we went straight up the mountain!

At the top, there is the little station where you can see the machine room, and 4 levels of an observation deck.  There is also a little cafe, so first thing, we fed the kids. It was lunchtime, and they made no mystery they were hungry!

There is also a nice little town as you walk out of the incline station....there were people out doing their yards, walking dogs, and enjoying the beautiful weather.  The air was so crisp and clean and refreshing.  We took a walk down the pathways and then ended up at Point Park, a local park packed with Civil War history, and breathtaking views of the valley.  We caught the end of one of the historical tours and let the kids run around for a bit.

After enjoying the outdoors, we went into the National Park Service museum and gift shop.  The kids had fun trying on different civil war hats.  Meagan tried one on too!

After visiting the shop, we rode back down the mountain on the train - it is quite a strange feeling being literally at a 90 degree angle, and going about a snails' pace straight down.  Logic and gravity just make you feel you should be moving a lot faster at that angle going down...  The train was laced with windows everywhere, and we all really enjoyed looking out over the views as we descended back to the valley.

We then decided to make our way to the hotel and let the girls swim.  Well, this was surprise #2.  The girls thought we were just heading back home and on the way we'd stop for ice cream.  We piled in the van, and started to drive.  We were only about 7 minutes from the hotel.  As we pulled in, I said "Well, instead of ice cream, how about we just stay the night and go swimming in the hotel?"  The girls' eyes got huge... "our hotel??" they excitedly asked. "Yep!" we said.  Again, the squealing (this happens when you have a lot of girls).  Even Meagan started to join in and was cooing extremely loud.

We got checked in, and everyone changed into their suits.  Even Meagan.  We went into the pool.. no one was there at first.  The girls jumped, swam, twirled, splashed, and yes, squealed.  Everyone was having a great time.  About 20 minutes into our swimming time, another mom and her two young daughters came into he pool.  She was very nice and we chatted a bit. After swimming, we rounded up the girls, got everyone showered and dressed and went to dinner.

The next morning, we woke up and got ready to head home.  We ate breakfast and got in the car.  The girls' last Lacrosse game was in the afternoon and we didn't want to miss it.  They all got dressed in their Lacrosse clothes, and we hit the road.  We got home just in time for the girls' games.  They had a blast! Meagan enjoyed being out in her stroller and taking in the sights, sounds, and fresh air.

After Lacrosse, we headed home... got showered again, and everyone changed for Mass.  We went to evening Mass and then met up with friends for dinner... of course at an Irish pub. We had a yummy dinner.  When I went to get the check, the waitress told me someone had paid for it.  I have no clue who that was, but, whomever paid for our birthday dinner, thank you so much.  It was an unexpected surprise and a nice treat for the end of our evening.

Before we left the pub, we of course had cake.  Meagan isn't eating foods yet, but we still wanted her to have a 1st Birthday cake on her actual birthday.  We sang to her and cut cake for everyone. I let Meagan sit on my lap and try a little of the frosting...she didn't like it (go figure).  I tried to let her "play" in the frosting, but she didn't like that either! Silly girl.  We were so blessed to be able to share a wonderful weekend as a family, and a wonderful dinner with close friends.

Wednesday, September 19, 2012

Cranial Vault Reconstruction - 2 weeks post-op

I can't believe it's already been 2 weeks since Meagan's surgery! The time is just flying...being home, getting back into our routines, carpools, dance classes, teaching, and all Meagan's doctor appointments and therapies picking back up.  It is a very busy time, but so blessed to be home still with no complications from surgery (fingers crossed!).

Since surgery, some things have improved.  I've noticed her being more vocal.  She has cooed quite a bit beforehand... but lately I've noticed her "babbling" more. She has added a few audible "consanants" to her sounds.  So far I have heard "dadadadadadadada" and "nanananananana."  She doesn't seem to apply these sounds to anyone or anything in particular, and it is completely random when it will happen, but it's very exciting to see her taking this new step in her communication.  This has been very suddenly.. within the last 8-9 days, so I do wonder how her brain is reacting to all the new space in her skull!   I've also noticed her seizure activity I was seeing has significantly slowed. We didn't change her daily meds, so I think things are "settling out" finally since the trauma of the surgery.  Both things I'm incredibly thankful for!

Other things are still a little slow-going... she seems "stalled" physically.  I know she may just be growing in other ways, so I"m not overly stressed about it.  It's simply an observation I've made as of late.  She also has fewer times per day where she is her smiley and happy self "on demand."  Is she still content? Yes.  Do I feel it's less often per day? Yes.  Partly, I *think* it's because she is sleeping more (whether it be growth spurt, post-surgery, or a combination of both), but her awake times also seem more "contemplative" these days... as compared to how immediately happy as she used to be.  So we will wait and see if these things improve at all, or if this is just her new "normal."

One thing that was a pleasant surprise is Meagan's head shape.  Again, I know this sounds silly....but I really missed Meagan's old head! As Meagan's swelling has gone down though, some bumps and ridges have reappeared! Now, I realize this may change (and I truly hope it will because it will indicate brain growth, which was the whole point for this surgery ...allowing more space), however, for now, it makes the transition a bit easier to feel some of those old familiar bones.  Her forehead is significantly different, but the ridge on top of her head has reappeared.  It's nice to see a little of the "old Meagan" transitioning along with the "new Meagan."  I'm excited to see how things continue to change over these next few months of recovery.

There are also some new things happening with the re-configuration of her skull bones.  She has a lot of "spaces" around her head now.  The easiest way I can describe these spaces is to compare them to a "typical" baby's soft spot.  It's like she has several soft spots scattered around now where they have spaced out the formerly fused bones.  One thing I've noticed is when she is snuggling me, sound asleep, her head now moves with her breathing in these spaces! It is somewhat strange, and somewhat cool.  So now when she is sleeping next to me, this is what I see:

On top of her regular recovery 'stuff', we are also incorporating her back into her old schedule.  Dr. R said no restrictions on her therapies... just to go by her cues, and possibly give her some Advil before or after her therapy sessions if needed, so Meagan resumed her PT at Children's.  As I said, we are seeing a little regression, but honestly, I expected that after surgery and also with her larger head circumference.  (She gained 3cm on her head from the surgery).  We also have added in other therapies (frankly, therapies she should have been getting for the last 6 months at least).

Our state EI program Meagan has been "in" since birth is finally making good on their promises for therapy.  After months of micommunications, unanswered emails, frustrating conversations, and still no change in therapies for Meagan , I decided to email them again and this time copy the state director on the email.  I received a callback within a few days. (Amazing how that works).    The local director was not too happy I went above her head,  but, it did get things done didn't it!  In the end, my focus and advocacy is for Meagan and the services she needs.....not for someone's feelings because their program isn't functioning efficiently.  If it means someone gets uncomfortable because I go above their head to make them accountable for their actions, then so be it.  Needless to say, now Meagan has an OT coming to the house to work on fine motor skills and feeding. (She is starting to work on Meagan with eating off a spoon/solids as she still isn't doing so with me at home). Meagan will also get a PT through the EI program who will come to the house.  We are going to keep her private PT at Children's once a week because she has done such an excellent job, and we have a good relationship with her.  We are starting speech therapy at Children's as well.

Meagan sure is one busy little girl! 3-4 therapies per week now, post op appointments, and running everywhere with Mommy for carpools, errands, and activities.  2 weeks post-op, and life is pretty good.  We are very excited to celebrate her very special birthday this coming Sunday! How could I not be when I get to look down at this snuggling me every night!

Saturday, September 15, 2012

Let's Face It......

....... was I really going to make it a week with no blog post??  Probably not.  Those who know me, know that I talk. A lot.  I never used to as a child. I was really shy... matter of fact, I was so shy I believe a little girl introduced herself to me in Kindergarten, and my response was to turn around and stand with my back to her. If someone asked me for a pencil in grade school, I turned about 5 different shades of red out of embarrassment.  As I got through high school, all that changed.... and now my dad complains that I don't STOP talking.

The weather is 'starting' to give hints of Fall time, and it's not quite as hot and humid.  The week is so busy with school, carpools, dance, Lacrosse, music lessons, Brian's work, and my teaching, that sometimes we don't get time to just go do "nothing" together as a family.  Brian and I decided to take the girls out to walk around this afternoon.... no particular reason or purpose, but to just get some time together.  We thought it would be a nice few hours to get outside, window shop a little at an outdoor town center,  and then take the girls to dinner (we have had so many generous people in our parish and in our family and friends who have given us gift cards to take a "night off" from cooking.  It was so thoughtful and we appreciate it greatly!).

Once we arrived, the girls got out of the car with Brian and I put Meagan in her stroller.   As I was strapping her in, I heard a lady's voice say to Brian (who was waiting up on the sidewalk with the older girls), "Oh wow, are these all your pretty girls?"  Brian answered yes, and said he also had one more who was getting out of the car.  At this time, I rolled up to the sidewalk with Meagan.  The lady looked over and said "Oh wow, 5 girls! And she's beautiful!"  I said thank you.  We chatted for a minute or so with this lady and her friends.  One of the women then happened to look over at Meagan again. Her eyes opened a bit wider, and she said "Oh dear, what did she do to her poor little head?"  We explained that she had just had surgery last week...and when the woman asked more detailed questions about Meagan's head, prognosis, and condition, we answered honestly.  After the conversation, the lady then turned to our other girls and said "Now, which one of you is this sweet baby's favorite sister? I bet you all are!"  The girls giggled.  As we were then preparing to get on with our walk, the lady said "Well they are all just gorgeous. What a blessed family you have!"

I'm pretty sure, because I do believe things happen for a reason, that God 'set up' this encounter today.  I don't think it was random.   The conversation with the women was so uplifting, enjoyable, and refreshing.... a total 180 from yesterday.  What a difference a day makes!

Friday, September 14, 2012

"So God Created Man in His Own Image......"

I hadn't planned on writing another blog entry until Meagan's 1st birthday, but something happened today that warranted a post.

My older three girls were at school.  I was at Target with Maura and Meagan to pick up some necessities and get a birthday gift for a friend's son. Being that I have 5 girls, standing in the boy section of the toy aisles is pretty fun - looking at all the fun toys, seeing ones I played with when I was younger with my brother, and just looking at new things besides princesses and Barbies.  I had narrowed down the gift to two items, and was standing there going back and forth in my mind.  We were towards the end of the aisle. Maura was standing with me, and Meagan was facing outward in her stroller.

A woman walked by the end of the aisle with her cart. She had a little girl about 4 years old sitting in the front of the cart.  The woman glanced down the aisle.  Immediately following her quick glance, she looked back again and slowed down, staring down at Meagan.  She then picked up her pace and continued walking.  I honestly didn't think much of it.  Ever since we've been letting Meagan "stretch out" in her new stroller when we go out, I have noticed more "double takes" and more stares as we walk through stores or down aisles.  I see her everyday, and see nothing different, but I know that her face is shaped differently, and that overall her appearance is not that of a "typical" 1 year old.  So I get that 'human nature' takes over at times and we give that second look at something that doesn't quite look as we expected it.  OK, that's fine.

What happened next is what prompted this post.  The woman came back by us, again, going the other direction.  This time, she came to the same spot in front of Meagan's stroller and stopped. She very blatantly STARED down at Meagan.  She then looked up at me after several seconds and  very "matter of factly" said "Will she ever look normal?"

The question caught me completely off guard.  I've had people ask "What's wrong with her" or "Why doesn't she sit up on her own or crawl ..etc.." and I honestly don't mind answering those questions.  I can tell they are asked out of genuine curiosity, and I feel it's my opportunity to spread awareness about Hydrocephalus and acceptance of special needs children.  But this woman's actions and tone were different.  We hadn't been having a conversation about Meagan. Nothing.

The first things that ran through my mind after the shock were several inappropriate words.  Most that shouldn't be said out loud. Ever.  My second waves of thought were snippy replies, returning a really stinging personal insult to the woman.  But then I just blurted out "So, will you ever have manners?"

I honestly couldn't believe that is what had come out of my mouth, but I was satisfied.  I believe it was blunt enough to make the point, but not quite to her level where I would have lowered myself to personal insults.  I think the comment back to her was appropriate, as it addressed the very reason I was so shocked by her question - she had no manners.

The comment didn't really "bother" me the rest of the day, but, it did make me start to realize I may have a lot more of these moments come up, especially as Meagan enters her second year.  She is going to be Meagan, which will be a lot different than the typical toddler.  And many more people will probably say many more things; some innocent, and some not, like the woman today.

I started to think about a 'normal appearance.'  What exactly is that? Even my 4 older girls look nothing like each other.  One has crooked teeth.  One has such big beautiful eyebrows, they meet together in the middle.  One has hair that is so brittle, it breaks off and doesn't grow.  One is missing a tooth she knocked out as a toddler.  None of their appearances are the same, and none are "normal."  They are each their own - each appearance tells their personal story, and I cannot imagine them looking any other way.  The same goes for Meagan.  She looks how she is supposed to look.  It is her story. It is her own.

We all have our flaws.  And we are all human. We tend to naturally stare or look at people or things that look a little different to us based on our own personal experiences and perspectives.  Curiosity is ok.  It is healthy, because it allows us to learn about new things and new people.  But we also need to realize that ultimately, God makes all of us. He makes all of us exactly as we are supposed to be.  If Meagan was supposed to look differently, God would have made her differently.  But He didn't.  Meagan is the perfect image of God as He pictured it to be. And I'm ok with that.

Normal? Nope... perfection!!!

Thursday, September 13, 2012

10 days

At this very moment, I sit 10 days from my sweet girl's 1st birthday.  I cannot believe we are this close to her turning one. What a difference a year makes. 

Last year at this exact time, I was 10 days from delivery.  I was in awe at seeing Meagan's eyelashes on the ultrasound.  I was fighting to have her delivered earlier than later as her head had grown another 6cm in just a few weeks.  But my heart was aching at the thought of not being able to hold her when she was born.

 Now, one year later, I am witnessing those eyelashes in person. I am still fighting for her everday... but my heart is full...and she is where she is supposed to be.... in my arms. Let the countdown begin....