Paving the Way

This post is probably going to be a bit different...and perhaps a bit long.  But it's supposed to be.  I love keeping everyone updated on Meagan and all her progress and struggles as she certainly has added new flavor to our family.  But I also want to make sure I acknowledge my other girls when there are special occasions because my older 4 girls are just as important to me as Meagan....and also an integral part of our family.

Reilly (2 1/2) with Kaitlin (16 months) and Anna (2 months)

Reilly with her sisters Fall of 2010

Reilly and 3 of her sisters being silly at a photo shoot

Eight years ago yesterday started off like any other day.  I happened to live about 2 miles from one of my best friends.  I was pregnant with Reilly, and my friend was pregnant with her first son, John.  It was one of those situations that just "worked out" as we both set out starting our families.  So I did what I did on most days I wasn't working - went to hang out with my friend, Preeya, and spend the day together.  We shopped a bit for the coming babies, walked around, and then finally went to lunch.  Reilly was due on March 3rd, which I always thought was cool.  My mom's birthday is 8-8...mine is 4-4... so I thought it would be so cool if Reilly was born on 3-3.

Wowzers! Me the day before I had Reilly. 40 weeks exactly!

Preeya and I finished up lunch together and I remember starting to not feel that great.  Here I was on my due date, and no signs of anything happening.  I wasn't holding my breath as I know first babies can often come later.  As the afternoon went on, I started to have cramping.  I thought perhaps I'd overdone it, or my muscles were sore....but then I realized these "cramps" were coming in somewhat of a pattern.  I started to write down the times and saw I had about 15 minutes between the cramping.  I wondered if this could possibly be the start of labor and got excited and nervous all at the same time.  I remember calling Preeya (this is pre-texting :) ) and talking about it with her.  We were both really anxious to see where it led!

Preeya and I last year

As the evening went on, Brian came home from work.  I told him how I'd been feeling and of course we'd keep an eye on it.  We were both tired, so we went to bed fairly early.  I remember 11pm very clearly because I woke up in pain. A LOT of pain.  I remember knowing "OK, these cramps are definitely moving into contractions."  I had never felt pain like that before.  It just radiated from my lower back all the way through my legs and into my lower belly.  I woke Brian up and we called the doctor.

My OB at the time was a nice older man.  He was always so sweet and concerned.  He was a great OB to have for that first child.  He told me to keep timing the contractions and when they got closer to 3 minutes apart to head in to the hospital.  At the time they were about 9 minutes apart, so we hung up the phone and tried to rest.  Of course Brian went right back to sleep. (Can you blame him? He at that point had worked 60 days in a row from early morning to late at night...sometimes coming home at 4am to just shower and then go back into the office.  Oh the life of a young and "taken advantage of" accountant).  I of course could not sleep.  I was so uncomfortable! I remember walking down the hall (which is using the term generously...we lived in an 800 square foot "home" which I really thought of as a box with two rooms upstairs so close you could spit into one from the other).  I went into the second room that we had painted for Reilly's room.  We didn't know if we were having a boy or girl so I had painted it a bright blue and green and made little cute animals out of wood cutouts from Michael's to hang on the walls.  I looked around at all the baby stuff with excitement.  I sat down in our glider that was set up in the room and rocked.  I was definitely breathing through the contractions and they were getting worse.  I remember going as long as I could, and then finally going back into our room to wake Brian. I felt like they were strong enough and close enough to go in.  It was about 4am.

Reilly's room in our first little condo

We packed our bag and headed out the door.  We drove in the quiet darkness of the morning..hardly any traffic and really peaceful outside. (A rarity for the DC area as there is ALWAYS traffic).  We got to the hospital and went to the maternity triage.  There they assessed me and I found out I was 2cm dilated.  They don't keep you in the hospital until you are 3cm.  On the monitor I was obviously having very regular and very strong contractions though so the nurse sent me to walk around the hospital for an hour hoping that would push me along.

I remember the disappointment the hour later when I went back upstairs and was still 2cm.  I vividly remember thinking "No way... things have been so strong this whole time!!"  Nonetheless, the nurses sent me on my way with a sleeping pill so I could rest.  We left the hospital but didn't want to drive home.  We lived about 45 minutes away, and didnt' want to risk going all he way back.  Luckily my parents lived about 15 minutes from the hospital, so we went to camp at their house.  I took the pill and fell asleep. Around 11am I woke up suddenly in immense pain.  Back to the hospital we went.

This time, we called the OB.  Looking back it was rather silly not to call him when we went in, but, we naturally thought triage would contact him for us.  (Naive!)  We explained to him what had happened and he apologized immensely.  He said no way would he have let me go home that uncomfortable especially in true labor and knowing how far we lived.  He said the triage nurse never called him.  If she had, he would have come up and ordered me into a room so we could have relaxed and just stayed.  Oops! Lesson learned for future children - ALWAYS call YOUR doctor... don't rely on hospital staff to do so.

A few minutes later, Dr. S came to the waiting area and personally escorted us back to my room.  After that things went fairly smoothly for a while.  I got settled.  My epidural was placed.  I was able to be comfortable and rest.  Around 5pm, I remember feeling immense pressure.  I called Brian over and told him to get a nurse.  The nurse came and sure enough Reilly was ready to be born.  Dr. S came and got everything set up.  About 30 minutes went by and all was going well.  I remembered reading with first babies that you can push up to 3 hours so I was trying to not watch the clock.  Then I remember Dr. S saying "Call the NICU team."  Huh? What?  This was all news to me.

Turns out Miss Reilly had decided to..ahem...go to the bathroom before she was born.  This is called meconium.  It's not good because it infiltrates the fluid and baby can breathe it in, causing respiratory distress.  Reilly's heartrate started to decelerate with every contraction and things weren't looking good.  It became necessary to deliver her quickly.  Literally the next push, with a little help from Dr. S and the suction, Reilly came out... crying and covered in her dirty fluid.  She was taken to the table on the side of the room where about 4 NICU doctors and nurses worked to clean her up, clean out her lungs, and get her on oxygen.  I remember waiting for those first cries...and when I heard her, feeling such relief.  Once they got her all taken care of, and realized that she wouldn't need extra care beyond the initial oxygen in the delivery room, they cleaned her up, wrapped her, and handed her to me.

Honestly, it is difficult to "remember" that moment.  It is so overwhelming at the time, and something you try to gauge beforehand... but there really is no preparation for meeting that little person you have been feeling grow inside of you for months.  I do remember being in complete shock to have a girl! I was almost sure I would have boys....and was so pleasantly surprised to be holding my daughter.  We named her Reilly - a family name on my mom's Irish side...contrary to the "popular" name 'Riley' which unfortunately exploded that same year.  We gave her the middle name "Elizabeth"..a family name from Brian's side.  So there she was. In the evening of March 4th, 2005, a little 7 pound 10 ounce bundle of joy, Reilly Elizabeth.  My first daughter. My first child.

Reilly with Daddy in the hospital 

Reilly at 3 days old. Her first day home.

Today is her 8th birthday.  Much has changed in our lives since that day in 2005.  We had another child 17 months later.  We barely sold our little house as the economy collapsed.  We lived with my parents for 4 months while we searched for homes.  We realized we could not stay in DC and fulfill our dreams of a larger family.  We also realized our dream of going back to Cincinnati at the time couldn't happen as there were no job openings.  We took a leap of faith and decided to look in Atlanta.  We lost my dear sweet Aunt quite suddenly bringing us to our knees in grief and tears.  We finally bought a house in Georgia.  We moved in during the hottest months Georgia had seen in years....and both AC systems in our new home went out.  We had our 3rd child, a 3rd girl, 3 months after moving.  While happy to move forward with what our family needed, we grieved the fact that we were not living near my parents anymore.   We lived through many nerve wracking yet proud months as my brother became one of the elite Recon Marines and went off to war twice.  We rejoiced when he came home safely and married the love of his life. We watched elated as Brian's sister married her Army sweetheart.  We waited with her as he also deployed several times to fight for our country and said prayers of thanks when he came home.  (We currently wait again so keep Uncle Mike in your prayers as he is overseas at this time again).  We had our 4th daughter and I started actively teaching again.  We watched our older children start school, activities, and begin to "grow up."  We went through the pain of miscarriage and loss, while enjoying the joys of growing our family and seeing nieces and nephews born all at the same time. And last but not least, were blessed with Meagan who ties us and all our experiences together.

It's been a busy 8 years since Reilly was born!

Living with Nana and Pop Pop

Moving to a new home...

Our new home in Atlanta

Enjoying the new deck in the summer we moved in

Getting back into performing again with the JCSO

Weddings...

My brother (my hero) and his gorgeous wife

My sister in law and her husband Mike at their wedding

Growing in relationships with her Godparents....

Reilly and her Godfather, my brother.....

....they share a special bond.

....as she does with her Godmother, Aunt Katie

Staying close with Grandparents:

With Brian's parents....

...with my parents. 

4 new sisters born..

Kaitlin....

....Anna...

....Maura....

...Meagan.

My artist...starting to take violin and dance

My serious beautiful girl...

My smart studious girl.... 

My silly fun girl... 

 Yes, things happen because we choose them to.  But things also happen because God gives us nudges in the right direction and we open our hearts to listen to Him.  Brian and I got married as soon as he finished Graduate school.  We were young, and ready to take on the world.  But both of us felt that nudge from God....we felt that calling that we were to be open to children early.  It wasn't the easiest decision, but one we decided to accept.  The more I thought about it, I knew I could always teach.... I could teach at 24, 30, or 50.  But I couldn't always try to have children.  I couldn't always try to have a family.  I began to see the clarity and wisdom in what God was calling us to do.  So we took that leap of faith and 2 months after we were married, were blessed to become pregnant with Reilly.  Reilly was my first child and my first daughter.  The moment I became pregnant with her was the first moment I was a mother.  We have given each other priceless gifts on which there can be no applied value.  However, more importantly, Reilly paved the way.  All of my girls and baby J have written a chapter in our family.... but Reilly was our first "chance" .... our first experience.... and the one who would lead us down the path that would become our family and our life.

Reilly at 8 months old

Reilly at 1 year old

Reilly at 2

So today, on Reilly's 8th birthday, I would like to say more than Happy Birthday to my first baby.  I would like to say Thank You.  Thank you my big girl for helping us begin our family. Thank you for being such a good girl, and for gracefully learning with us as we make mistakes along the way.  Thank you for being such a great big sister.  Thank you for being the good example you are to your other siblings... showing them the proper way (most of the time :) ) to obey, help, and have an open heart to God.  Thank you most of all for paving the way.  Without you, there would be no Kaitlin, Anna, Maura, baby J, or Meagan.  Without you, daddy wouldn't have his starting player on his girls basketball team.  Without you, we wouldn't be the family we are today.

Reilly (3 years old) and Mommy  

I love you Reilly Elizabeth.  Have a very happy and blessed 8th Birthday.  You are truly one of a kind....and I only hope to grow and follow the example of kindness and faithfulness your heart shows us each day.

This Is Why

Sometimes when we are out, and I have the 5 girls with me, I get a lot of comments.  Well, I take that back.  Almost every time we are out, I get comments.  Sometimes they are good, and sometimes they are rude.  The good ones I appreciate.  Any mom would.  When someone compliments your family, you take pride in that.. and honestly it gives you that little pat on the back that society fails to give most hard working parents.  It is refreshing to hear the pleasant things people have to say about children.  The rude ones - I mostly try to ignore.  I chalk it up to people having a bad day, being ignorant, or being just plain purposefully mean.  The first two situations I can understand.. we all say things we don't mean at times so I let it slide.  The last situation...it depends on the day I am having whether I grace them with an ..... ahem.... "appropriate" response from my Irish/Russian temper, or whether I let it go.  Nonetheless, neither of those categories are what has bothered me most.  What bothers me the most is the "Oh I'm so sorry".... the "I feel sorry you have all those kids!" ...or the all to 'lovely' comment of  "Oh that is so sad..."  when they ask about Meagan and hear her story.

I really don't get what is so sad about it to be honest.  I get things might be "different" with Meagan, but really, what does it matter?  Isn't that true with all our children? Is it sad for Meagan? Or sad for her sisters? I'm really not clear what is so sad about any child.  The day they are born we do not know what they will do, what they will be, or even how long they will be here.  God is always in control, even with our typical children.  It was at this moment I came across this video:

I watched it in awe.  This young man who had fought so hard his whole life had fulfilled a dream most would have thought impossible.  How awesome was this story!

It made me realize "this is why...".... This is why (when the Perinatologist told me "it" ...referring to Meagan's life I'm assuming... would be "too hard" on my 4 older children...)  I had the reaction that I did.  This is why I looked at him in disgust.  This is why I asked him how could I possibly explain to my older girls I chose to love them, but not their sister.  Because we don't know.  We don't know what she will do, or what any of our children will do.  And even when she dreams big, what may seem impossible to the rest of us, (as I'm sure this young man's dream of owning a restaurant did), could not only be possible, but actually become a reality.  

So if you happen to pass by us as we walk in our ignorant bliss through the stores, don't feel sorry we have "all these children".....  When you ask about Meagan and hear her story, don't feel "poor" Meagan is a burden.  And please don't comment as such.  The lesson is... you just never know.  Seeing the "Tim's Place" video this week brought me to tears and smiles all at the same time.  It taught me that as much as I wish for Meagan, it's important for me to first and foremost let her have her own dreams as she grows ...and do everything I can to help her reach those.

I know Meagan will never look on others with sadness, but only with the joy and innocence of life.  I hope that she is able to do everything she sets her mind to.  And who knows......maybe one day some of those people will walk in to "Meagan's Place."  Maybe then, they will realize...this is why.....

Crunch Time ... GI woes and Oh So Close to Sitting....

It has been quite a busy weekend for us at the Gareau household!  To start out the weekend, my older two daughters had their first Feis (Irish Dance competition)! They were able to compete for the first time, and had a blast! It was a very exciting weekend and to make it better, Nana and Pop Pop, two Aunts and several cousins came down to visit which made it all the more exciting.  Reilly and Kaitlin did well, especially for being Beginners.  They earned a few 1st, 2nd and 3rd place medals between the two of them (as did their cousins) and had a great time competing in their dances.  The weekend continued with family visits and dinners, Mass, and then the last game of their basketball season.  I was happy the girls had a great weekend...it was tiring and non-stop movement, but wonderful and fulfilling.  It was a great way to round out the end of February.  Of course as Monday approached, it was back to our usual busy schedule with school, homework, dance class, household chores, and all Meagan's obligations with appointments and therapies.

My older two girls after their Feis (the brunette and strawberry blonde in the black dresses) along with their cousins (some Irish dancers as well and some here to cheer them on).  

Reilly, Kaitlin and Anna getting their end of season trophies for Basketball

I recently mentioned Meagan being referred back to her GI doctor.  As much as our Pediatrician was on top of Meagan's weight and feeding issues, we had reached the point this past month where she felt her monitoring was not enough.  Dr. B felt that at that point since we hadn't seen much weight gain from Meagan, it was time to go back to GI and see what they felt was a reasonable plan.

This should have been no problem, as Meagan is already a patient at the GI practice.  We have seen them since she was in the NICU through this last year before we started feeding therapy.  However this time, we wanted to see a different doctor.  Same practice, but, different doctor.  While Dr. P was very nice, we felt medically, he was not a good match for us at this time.  In the past he has sent us home with appetite stimulants and recommendations for high calorie formula.  While these were reasonable steps to try and increase Meagan's calorie intake he never scheduled a follow up appointment.  No weight checks.  No date set when we would re-evaluate Meagan's condition.   When asked, he said it wasn't necessary...which totally confused me.  Here he had a brain kid who was losing and plateauing on weight gain, who liked food but wasn't able to take in the volume she needed, and who after 8 months of feeding therapy saw no great increase in her eating or weight....yet a follow up wasn't necessary? It just didn't sit right with me.  I needed a more pro-active doctor.  Someone who may have started with the same plan of the stimulants and therapy, but was more willing to sit down and make a long term nutrition plan for Meagan so we had goals and knew what to expect this year.  When I called to make the appointment, I got a bit of a surprise....switching doctors was going to be quite the challenge.



In the past, we have switched doctors in almost every practice Meagan sees - from her Pediatric practice to Neurology...it is never an issue to schedule appointments with different physicians or even nurse practitioners based on who has openings in their schedules, or with whom we feel most comfortable dealing with Meagan.  Not so at the GI practice.  In order to see another doctor (one who has come highly recommended to us by our Pediatrician, two other Hydro families, and another family we know who has a non-Hydro child with GI issues), it has proven quite the process.  We had to fill out an application and then an over the phone form with an operator at the practice.  They then send the form and application on to the Operations Manager at the GI practice.  They get 10 business days to "review" our reasons for switching doctors.  If approved, the form then travels back to our original doctor at the practice who gets 10 more business days to officially sign off Meagan to the new doctor... or he could not sign, meaning we are stuck back at square one.  This could also happen if the Operations Manager does not approve of us seeing a different doctor.  Sounds crazy right? Well, it is in my opinion.  There are no insurance or schedule discrepancies... therefore, I should be able to have my daughter seen by the doctor of my choice.  I could not believe the hoops we had to jump through to see a different doctor...in the same practice....especially when she is already a patient at the practice!

It has been 10 business days and of course, there has been no return phone call.  So being the squeaky wheel I can be when necessary, I called them to check on the status of our "application."  After 26 minutes on hold, the receptionist finally took my information and told me I needed to be put through to the Operations Manager.  "Great!" I thought.  Just the person I want to talk to .... after several more minutes, she picked up.  I once again gave the information and birth date to the Operations Manager.  The response was "Hmmmm..hold on one moment...." and the next thing I heard was her voicemail! I could not believe I'd spent 38 minutes on hold to be shoved off to her voicemail.  I left her a detailed message and am still awaiting a callback.  In the meantime, Dr. B (Pediatrician) has a few names for us at Emory to call in case we never get through to the new doctor at our current GI practice.  It has certainly been an education the past few weeks merely trying to see a different practitioner!  So we will see what happens...at least we have Emory as a "plan B" in case we never get our "application" approved.

I'm sorry.. you want me to fill out what... and wait how long...to see a doctor in a practice in which I'm already a patient?? Mmmmmmk....

On a different note, Meagan is still doing well with her PT.  She is still showing interest in supported sitting and seems to almost prefer being upright these days. We found a neat toy that encourages her to be upright and she seems to enjoy it.  Although my older girls seem to enjoy it as well.  If only I'd known they wanted a V-tech alphabet cube for Christmas....would have kept things so much simpler!  :)

Meagan still enjoys lounging in her nap nanny.  She doesn't sleep every night in it anymore, as I mentioned before.  One of the reasons for this is something that happened a few nights ago.  We were watching TV and folding laundry while Meagan laid in her nap nanny.  She was playing with a ball and it dropped out of the side.  Normally she would fuss or reach over to try to see where it went.  We would typically get it for her when she got upset and she would go back to playing.  This time, it was different.  There are really no words to describe what happened but when I saw what she was starting to do, I grabbed my phone (ie: my camera...) and snapped photos.  Meagan was able to pull herself up at an angle (like a sit up) and reach over the side and search for her ball.  When she found it, she laid back down and continued to play.  Here is what I saw that night:



                 Looking.....

Lifting......

  Reaching......

                  Got it.....

   Success!

This was really the end of my blog notes for this entry...but tonight she has started to do something we have been helping her with for a good 6-8 months.  Meagan could never hold two items at one time.  When one hand would grab a toy, the other would let go of the other toy she was holding.  It was like her brain could only tell one hand at a time to hold an item.  Tonight when she was playing with her blocks I heard a noise...bang...bang...bang...  My 3 year old was sitting with Meagan so I didn't  think much of it.  I continued helping my oldest with her religion project and still I heard.. bang...bang...bang.  Then I realized the noise did not sound consistent.  It did not sound like my 3 year old... much to my surprise I looked down and Meagan was laying there, holding two blocks out of her new cube toy, and hitting them together! I took a little video of her.  I could tell she was working incredibly hard.   She normally reacts to me immediately in videos with smiles, funny faces and laughter (as you all have witnessed), but this time I think she was concentrating SO hard, that she couldn't even manage her usual laughs! Meagan seemed to really enjoy her new skill.....and I'm not exaggerating.  I'm pretty sure she laid there and banged blocks together for a good 20 minutes.  My poor oldest daughter, Reilly,  continued working on her project ....with loud banging in the background from her little sister's blocks.  Some may say distraction, but, I say Meagan is just helping Reilly build concentration. :)

Overall she is still doing well.  We have officially passed the 3 month mark with no seizures.  I'm almost nervous to admit it, but, it is something to be thankful for.  This time last year she was hospitalized for a med change...because she was still having 20-40 seizures a day...and something had to be done.  I cannot believe what a difference a year makes in some areas.  On the other hand, this time last year she started to refuse bottles...and here we are a year later dealing with her eating struggles....but I can't really do much different about that right now until we get the GI mess sorted out.  In the meantime, we are shoving anything we can into her that has calories or fats.  She didn't seem too sure about the whipped cream today off of my daughter's milkshake...but I tried to give her as much as she'd take.  After a few minutes, she got quite a kick out of it. She was content that more ended up on her face than in her mouth, but, what kid doesn't.....

Not too sure about this stuff....

Fingers over whipped cream? Come on Megs! 

She thinks she's funny....

So as we wait in "GI limbo," we are anxious to get in with the GI doctor and work on a schedule for Meagan.  Another Hydro family was able to give us the name of a nutritionist at the practice who has worked us in for an appointment.....so that was extremely helpful. Between the nutritionist, her Pediatrician, and her GI doctor (whomever that may be) we will see what they recommend in these next few weeks.  We aren't really nervous about any particular plan they may suggest...more than anything we just want a plan so we can move forward and know what the next several months hold for her regarding her eating.  The longer we go with her growing in length  while trying to push herself at therapy, without having good weight gain, the more of a chance she is going to lose muscle mass and struggle to gain strength as time progresses.  I feel like we are in "crunch time"....needing a proactive goal with an experienced doctor to keep staying in front of her eating struggles so we can keep her momentum going in other areas. Hopefully the GI issue is resolved in the next week or so....or they may have a Mama sitting in their office in person with 5 tired and hungry children.  I'm guessing that may inspire them to deal with me. :)

Such a ham! 

Expect the Unexpected Part 2 - Changes and Dates

Just wanted to drop a little update on my situation since I have some new news. I was not comfortable with the first ENT I saw. If you will remember there were several things that didn't sit well with me (not doing the surgery at a hospital, giving me a surgeon very new to the practice with not much experience, etc..etc..)  I went to see another ENT surgeon yesterday for a second opinion, and boy am I ever glad I did!  

I had my CT scans last Friday.  They did a full head and neck scan along with my upper respiratory system (throat and lungs).  Scanning the lungs is mostly preventative because the first place Parotid Tumors like to go is the lungs. There were some areas with spots but the radiologist said they were probably tissue spots and not calcifications which made me feel a little more at ease.  The new surgeon, Dr. P, couldn't tell me much more about the actual lung slides, as it's not his area of expertise, (which was fine), but, he was able to go over in detail the part of the neck CT where he could see the tumor. Dr. P said it is well defined in the front just as it feels from the outside...but to his surprise it has undefined/rugged borders at the back so the tumor has characteristics of both benign and malignant growths. This makes sense because it also has several different cell types making it up (We know it contains Acinar or Acinic cells, and also has a mixed make up of solid and cystic quality).  He said this is another reason to have it out - mixed tumors have more of a tendency to degenerate into malignancies. Dr. P said in his experience, considering I have caught this at a smaller size, and considering that so far it seems slow growing,  it will probably all be fine ....but he has to wait until it is out and sent to pathology to say its 100% benign. Dr. P said even if it is cancerous the first step of treatment is removal, so in essence, either way, we are a step ahead of the game and on the right path.

So interesting...a picture I snapped of my lung scan

Another great thing was his explanation of how he would remove the tumor.  Generally these present problems with the facial nerve bundles because they either run through or very close to these tumors.  Dr. P said again,  because of the size of my tumor he may be able to workaround endangering my facial nerves by attempting the surgery from a different angle. He said to do so he would have to sever a nerve in my neck (which would mean loss of feeling in the right ear and that acute part of my head.)   However by doing that he could avoid most danger to my facial nerve bundle. I was SO glad. I can definitely deal with a numb right side of my head/ ear forever if it means a great chance at keeping my right side of my face in tact. 

When I told him about the other ENT,  the lack of experience, and how they brushed the surgery off as a simple removal, he stepped back almost surprised.  He said absolutely not.  Dr. P said removal of a Perotid Tumor is actually a very specialized and involved surgery. He said even with the size of my tumor, the surgery will be about 3 hours long.  Since I did find it at a smaller stage, it can probably still be on an outpatient basis but even so, he said he always does this surgery at he hospital because its so involved. He said he would advise against doing this surgery at a surgery center, especially one not connected to a hospital.  My concern exactly!

I walked away from my appointment feeling much better about the whole situation. The Nurse called me this morning promptly and scheduled my pre-op appointment for April 2nd and my surgery for April 5th.  She apologized for not having an earlier date available, but Dr. P will actually be gone the entire middle of March.  I didn't mind - waiting a few extra weeks for this particular doctor to do my surgery is completely worth it to me. 

  Of course, I won't have that "final" peace of mind until this is removed, and I have that final pathology report in my hands.  But I know that can't happen until after surgery day anyway, so at least I have a little calm in my storm for now.  But I heard a song on the radio the other day that said "every storm runs out of rain..."  I can't tell you how much I hope this is true for me! I realize there are worse things in the world...but lately it seems like my storm cloud is full of precipitation.  I will gladly welcome a few sunny days here in the near future!  


I will keep everyone posted as pre-op day approaches.  Thanks again for all the prayers and keep them coming! In the meantime, a few pictures of what keeps me sane...my crazy fun (and always entertaining) family.

Daddy having a serious talk about something with Reilly...while Kaitlin hams it up on the side. (What is it with the blonde children in my family??)

Ahhh yes, the other blonde child...Maura... being silly with Mommy's upgraded phone. (She loved that she could see herself in the camera) :)

Anna, my mini me...with frosting all over her face.  Even at 5 1/2 she is still my messiest eater.

Of course, my reality check..when I think things are bad for me, one look at her and I know I need to suck it up and take one for the team.  My sweet girl is my motivation as are all my girls and my wonderful husband.

Teamwork - 17 month PT Update

Well what does one do while #1..awaiting important and nerve-wracking medical news.... and while #2..having a personality that makes such waiting absolutely unbearable? Well, you keep busy.. that's what you do.

For me, it's not that hard to do.  My everyday life does pretty well at keeping me busy.  Between 5 kids, Meagan's needs, teaching music lessons, tending to an over-zealous (yet aging) senior Labrador, and having a husband who is working hard to support us (meaning most housework and clothes and toys that need cleaning falls on my shoulders...) it is all certainly plenty to pass my hours on a daily basis.  On top of the "usual" (which is my short term for the previous list of daily duties), I also have been working with Meagan tirelessly each day on her PT every spare second we get.  I realized a good update on what she is doing lately in therapies would be a positive thing to write about...(I also realized I hadn't updated that aspect of her development in quite a while)... so here we go.  Bear with me.. it's a bit long. But if you read through to the end I guarantee you will be smiling. :)

Seriously mom... not another picture!

I have always worked with Meagan throughout the weeks on her PT, but she always had heavy time periods where she would sleep, be sleepy, or have seizures...so because of all that, our PT time was sometimes limited, or not at all depending on how her day was.  Being that we have been lucky with her mood and seizures as of late, I have been taking full advantage of the extra time we have.  Meagan has been doing really well with playing on her side.  She even has started to roll over to her belly, but she will immediately return to her back. We are slowly working on rolling all the way over, and hopefully sometime in the near future we will get there.  She just has to realize that she can also get off her belly by continuing to roll the same way instead of going back the way she came.

Sitting was one of the other goals we set with Meagan's EI program this year.  Now that we have had these few months of health with her, and also now that her shunt setting seems stable, she is a lot happier with positional changes.  This has allowed me to work with her many more minutes at a time on supported sitting.  Another large factor in this improvement is her head control.  It has really taken off especially in the last month.  Now when I hold her on my shoulder she can lift her head off for a few seconds and look around.  Also, when you hold her in a sitting position, her head can bob forward and she can catch its weight - and even hold it to look around for a bit.  When she reaches her limit, we know because she simply slowly collapses over her legs and folds herself in half.  Then I know head control practice is finished :)

Passed out after therapy!

Because of Meagan's new head control, I have been able to try and get her to sit supported with things other than myself.  She did well for a while working with me (and her PT) but she has learned the practice of arching back - and forcefully.  Of course we don't let her slam onto the floor because of her head and her shunt.....sometimes I wonder if she knows this because each time she slams backwards and we catch her, she usually looks to the side as if saying "What? What happened? I didn't do anything...."  or even better she will look right at us and clap as if saying "Yea, this is what I wanted ...I'm the boss!"....

We have implemented a few new supported sitting positions for her so she isn't trying to flail herself backwards into a person.  One of these is to work with her on a chair or couch so we can prop pillows around her and let her do some work... not having a person right behind her so she won't arch.  She seems to like this a little bit, and it's even allowed me to sneak in some time with her arms.  She HATES putting weight through her arms.  (And I use hate in the full sense of the word.) So being on the chair allows me to prop her at an angle with pillows, "forcing" her to use an arm to lean on and therefore put a little weight through it.

As you can tell, she just 'loves' this....(enter sarcasm)..

We also decided to purchase a playnest about a month ago.  It's basically a big blown up pillow that looks like an inner tube.  It allows Meagan to sit with some support inside that hugs her back... but if she flails backwards I can actually let her go.  The soft tube sides catch her fall and it lets her see that no one is going to catch her when she decides to have an attitude.  I give her a little support and we work on strengthening her trunk and increasing her head control time.  It's worked fairly well so far.  (Although sometimes she just prefers to lounge.)

Supported sitting in her nest..it gives her support up to her middle back and I help stimulate her upper back muscles by walking my fingers along her upper back and lower neck.  She can last like this for about 15 seconds and then an additional 15 seconds as she folds over when she tires out.

Starting to get tired....relying more on the nest and mommy's hands...

This is her "ok mom, I'm seriously done" face. We let her lay down after this.  30 seconds seems like a short time, but to her it's a lot of work!!

Something else we have continued with Meagan that really seems to help is her compression massages.  Basically, we hold her limbs (arms, legs, hands, feet) one at a time and with one hand, massage up and down that particular area with deep squeezes.  It helps stimulate her muscles, and also cuts down on some of her major sensory issues with her arms and legs.  There are some days she lays there and seems to enjoy the pressure, and other days she fights it.  Her sisters will sometimes help distract her so we can make sure to get her massage finished.  She definitely couldn't do a lot of what she does without her sisters.  They have been such great helpers and have learned so much themselves. Teamwork is key in this family!

Compression massage time! Anna and Kaitlin tackle either arm with compression massage while Maura adds some distraction!

Reilly helps Meagan work on sitting up

Maura helps Meagan with her bath

Overall we have seen huge improvement in Meagan's abilities the last few months.  If we can keep working on her head control getting more consistent and for longer periods of time, and keep strengthening her trunk with the supported sitting, we may be able to see her sitting alone sometime this year.  I'm proud of how hard she has worked.  It is so difficult for her to even do the smallest things.  Each time she lifts her head, and holds it just a few seconds longer, or balances in her playnest or between pillows to try and sit, I thank God for the small steps she has been able to take.

This progress is very hopeful and exciting, but I try to enjoy the moment of what she is accomplishing.  This isn't to dampen her improvements, but to just keep things in perspective and truly appreciate what she is doing at that time.  I often get questions (and completely well meaning questions) from people about these new things... "Does this mean she will sit up soon on her own? .... does this mean she will be crawling this year?...."  The answers are still "I don't know."  The truth of the matter is, Meagan will continue to do what Meagan does, on her own time.  We are thrilled about her recent strides in strength and stamina, and just try to take a day at a time.

I can't help but smile every time I look at Meagan. She has really brightened my perspective, especially this weekend.   I love how she has brought us even closer together as a family.  Each time she takes a baby step forward, it teaches us patience, gratitude, and more importantly teaches my girls how to work as a team.  We are excited to see what the coming months hold for her. Most of all, though, we are continually happy she is here with us.  We are thankful she continues to teach us life's lessons we sometimes let slip by...... perseverance...hope...and most of all unconditional love.   And that's something we can all smile about.

Expect the Unexpected ....Part 1

Meagan is on a good streak health-wise.  She has avoided any more flu viruses and is a happy and very stubborn girl as of late.  She has been making some progress in her PT.  We have seen her time increase in her ability to handle supported sitting and we are excited to see where that leads in the next several months.  In addition to being very lucky health-wise, we have also been so lucky as of late with her seizure meds.  We seem to finally be at a good therapeutic level for Meagan.  If we reach February 23rd with no change in that pattern, that day will mark 3 months of no seizures!  I feel this is a major factor in Meagan's recent good streak of development.  I'm very excited about this, but also hesitant.  With each passing day I have the mixed reactions of relief and suspense. I am so happy she is enjoying seizure-free days, but this is so new that I also find myself holding my breath just waiting for the one day they return.  For now, though, we are extremely thankful for how she is doing. She is such a joy and I love seeing her thrive and grow.  She is still having a lot of struggles with feeding, but I will save that for another post.  She has not made good improvements in her eating, and has not gained weight so we are now in the process of getting a consult to go back to her GI doctor and talk about long term plans for her nutrition. I will update more on that once we meet with him and know exactly what path we are going to take.

It's funny how life throws you a curve ball just when you think you have it all figured out. With Meagan being in a good streak, I've been taking the time to finally catch up on myself.  I had found a lump behind my ear last November.  I had no idea how long it had already been there, but, it was only about the size of a pinhead (think the big color push pins our moms used and would stick in the pin cushion).  I decided I should probably get it checked out since it was in such a strange spot, but then came Thanksgiving, the end of the school semester and a bustling Christmas season, and, I completely forgot about it.  Fast forward to after Christmas.  I was going to put in a pair of earrings I had received as a gift.  Since it had been a while, I decided to clean my ears first.  As I ran my finger down the back of that same ear, I felt the lump again and remembered.  Except this time it was easily palpable.  This time it felt larger.  Then I knew I had to get it checked out.

The first week in January I went to see my Primary Care doctor. The lump was honestly a secondary reason for my visit because I was more concerned about my fatigue and weight loss that had been happening.    Dr. L was very thorough and her first thought was thyroid.  She ran the gamut of thyroid tests, and to be honest, I was hoping for a positive result so I had an 'easy' reason for my symptoms.  Of course, all the tests came up normal.  So now it was on to the lump.  Dr. L examined it and said she really wasn't sure what it was.  She said considering its location it was probably a cyst or a large lymph node.  She mentinoned the possibility of it being a tumor, but said that would be a strange outcome because normally tumors in that area are seen below the ear or in front of the ear.  She sent me off to an ENT because she said they would know better what it was.

A few weeks went by and I got in to see an ENT.  At my first visit, the doctor said much of the same that Dr. L had said.  ...."probably a lymph node or cyst.... probably not a tumor.... etc..etc."  She said she would refer me to her partner for an ultrasound to see for sure what was going on.  The following Monday, I returned to the office for the ultrasound.  The ENT put the ultrasound wand on my head behind my ear and the first words out of his mouth were "Oh wow..well it looks like you do have a tumor there sweetie....."  Well, not exactly the sentence I was hoping to hear!  Right then of course my nerves took off in another direction.  He said because of my age and its odd location he wanted to do an FNA (Fine Needle Aspiration) to see if they could find out anything about the cells making up the tumor.  Basically, they were trying to see if they could pull any cells to help them figure out if it was benign or malignant.  He said results could take up to 2 weeks but he would order them STAT to be back in 3 days. He also said because the needle takes such a small sample, it is possible to not get enough for a firm result. He did three passes with the needle - trying to get as much as he could, but I could tell he was having trouble. He said the tumor was in such an odd spot he was having trouble reaching it.   Tears started to stream down my cheeks on his last pass...it hurt..and hurt really badly.   But all I could think of was all Megs had been through and I just kept focusing on that to keep it in perspective. When he was finished, he said we would still aim for a 3 day result and I made a follow up appointment for Thursday.

Finally able to see what I have been feeling...a tumor in my right parotid gland 

Those 3 days were definitely the worst days of my life.  Knowing something that isn't supposed to be there is growing in your body, and knowing that it can be something bad is unnerving.  All that swirled through my head were my girls, their care, everything I do with Meagan, everything I do at home.  I was calm on the outside but inside I was freaking out.  There is really no other phrase to describe it.  Luckily I had good friends and family keeping me busy.  I don't think I've ever eaten so many fries or pieces of candy trying to distract my mind from the test results (and that's not an exaggeration).  Finally Thursday came and I sat nervously in the exam room. I remember just staring out the office window at the rain counting the seconds until the doctor came in.  It seemed like an eternity.

Leave it to the day of my results for the doctor to be called out...meaning the doctor at the office was seeing a double patient load.  My wait was over an hour and I was shaking.  The doctor finally came in to talk to me.  She was not the doctor who had done the ultrasound and the testing.  She told me the results.  Basically, they were inconclusive.  It felt like a brick wall hit me.  There is such a disappointment when waiting for important results only to have no conclusive answer available. He did say the biopsy was able to pull one type of cell that was in the tumor, but, didn't get enough information to make a firm finding.  That said, she told me she was "sure" it was "probably" benign because "85%" of tumors in that area do end up benign (unless they find a malignancy inside the tumor after it is surgically removed).  Those who know me know this did not sit well with me.  Basically, I got a non answer.  I am an answer person.  Don't tell me statistics.  Don't tell me what will "probably" happen.  I don't bet on statistics.  I bet on fact and firm answers.  Because of the uncertainty, as a next step, they scheduled me for a CT scan of the head and neck.

 Meanwhile, I went back a few days later to talk to the original doctor who suggested having it removed either way.  From researching, I knew this was probably the next course of action, and frankly, I was glad.  Normally I'd never rush into surgery.  But with a tumor that had grown in size, and not knowing 100% what it was, I wanted it out. And as soon as possible.  Also, another underlying factor is my profession (outside of being a mommy of course).  I'm a musician...a flutist.  This tumor is near and starting to push on a bundle of facial nerves that controls the right side of my face.  Even if post surgery it shows the actual tumor is nothing harmful and never would be, I still cannot leave a growing tumor near such a sensitive area.  If I do, excision will become much more complicated, and the risk of damaging those facial nerves will grow.

After all the surgery talk was over, I met with the scheduler to talk about dates.  They could get me in by early March, but then a few things happened that I didn't like.  First, the original ENT surgeon wanted to schedule me at an outpatient surgery center not near a hospital.  It is an outpatient procedure, but, I have never been under anesthesia before.  If something goes wrong, I don't want to have to be rushed to a hospital.  I want to be in a hospital. Secondly  the surgeon told me to go ahead and cancel the CT scan.  They would just go in and remove the tumor since we were now moving forward with surgery, so no need to get a CT scan done.  I highly disagreed.  The very fact that there is a foreign tumor growing behind my ear makes me want to get the CT scan more.  I need the peace of mind to see everywhere in my head and neck and know for sure there are no other questionable areas.  I need the peace of mind knowing that when they do remove this one, there were no others at the time to worry about.  Thirdly, he was willing to risk letting it grow more to watch it, if I wanted to put off surgery for a while....fully knowing I am a musician and any impact on facial nerves could have a detrimental impact on not only my playing and teaching career, but, the way I help support my family, even if a little bit. More importantly to me, the longer these tumors stay and grow, the more likely they are to degenerate and turn malignant as time goes on.  It didn't matter what the percentage was - I have 5 kids and a husband counting on me, and there was no way I would take that chance and then say in 6 months, "oh I should have had that out 6 months ago." ....

So here we are, stuck in a sort of "limbo" for the time being.  Tomorrow morning is finally the Friday of my CT scan.  I was able to talk to some friends in the medical field who gave me the name of a very reputable ENT surgeon that works out of the hospital.  The doctor had no openings until April but after telling them my situation, his office called back and said he would be glad to work me in Monday morning. As in, 3 days from now Monday morning. I felt "yes, this is a step in the right direction."  The new ENT also said that he would be glad to read the CT scan with me right there at my appointment on Monday and go forward from there to make a plan. I feel the direction I am headed with this new surgeon is going to be much better, and he will do a more thorough job not only with the surgery, but with my monitoring afterwards.

It's funny how when something is wrong with one of my kids, I am immediately in to "mama bear" mode and pushing forward to get the best result possible.  I tend to worry or feel fear after the fact, once everything is resolved.  Now that it is me in the situation, I have felt fear first and had my fight grow as the days have passed. It's not a fear of anything for me, but a fear for my kids and my family.  It's the knowledge that I do "everything"  for my family,and knowing that until I have this mass out and sent away to pathology, I'm dealing with an unknown entity (with which I do not do well) :)  

On the way home tonight I was listening to a cd and thinking about this whole situation. One of my favorite songs came on...... "hold on.. to me as we go.... as we roll down... this unfamiliar road...."  The lyric really spoke to me.  I remembered that although I'm facing an unknown, I need shake off the fear, and grasp on to those close to me until I have my answers.  I need to have faith that God will guide me along the way and pray.  And whatever the answer is on surgery day, I have to trust that it will be ok.  I will be sure to keep everyone posted as we chip away at the appointments before surgery day.  Please continue to pray for Meagan as she always needs your prayers.  But I would also ask for prayers for my girls, that they be patient with me as I am a little on edge lately.  Prayers for my dear husband who I know is deeply worried on the inside.  And prayers for me, that this process moves along smoothly and after all is said and done, everything will be alright.

"....."Fear not, I am with you; be not dismayed; I am your God.  I will strengthen you, and help you, and uphold you.........."

- Proverbs 41:10