Pre-op Peace

Today Meagan had all her pre-op appointments.  First, we went to Children's to get all her paperwork and bloodwork done.  I checked Meagan in, confirmed all her information, and then went back to see the nurse practitioner for all her anesthesia pre-op questionaires.  We went through all of Meagan's medical history, and got her bloodwork done.  Afterwards, we went across the street to the pediatric plastic surgeon's office to sign all our consents.  We talked with the nurse and went over details about the procedure.  We went over all the risks and possibilities of what "could" happen during the surgery.  It was at this moment, I started to feel a few butterflies in my stomach.  "This is really necessary, right?" I thought to myself. Even though I know it is, there is still that moment where you are also "deciding" on something for your child.  She isn't lethargic in my arms in need of emergency surgery.  So it's a little tough sometimes to "decide" your child has to have surgery - even though it is absolutely needed.  I continued to sign the forms and finished my conversation to the nurse. I felt "good" about moving forward, but still had a few of those butterflies.  Then, I noticed the paper at the back of our consent packet. It read... "Prognosis if consent is refused: POOR"

 

I immediately breathed a sigh of relief.  That was the last little "sign" I was looking for to verify my feelings we were making the right decision.  We want Meggy to have the BEST prognosis that is possible.... seeing "poor" checked in the prognosis line if we did NOT do the surgery, gave me instant peace of mind.

 

So on we go! Only 5 days until surgery now...hopefully it will bring my sweet girl some "head" relief and continue to help pave her path so she can keep reaching for her greatest potential!

 

 

God Will Provide

It's funny how things work out.  It always seems really great times cluster together, as do really trying times.  The past week, this has what's happened:


- Dudley was diagnosed with slow moving liver disease, requiring blood tests and xrays every 3 months to make sure we are on top of his health. (Yes, he is our dog. But he is an integral part of our family, including his ability to stand over Meagan when she is about to seize, so we will by all means do what we can to prolong his health).
- Meagan's seizures have picked up suddenly.  She's also doing something new we need to call the Neuro about and get it checked.
- Babies Can't Wait (the program Meagan automatically qualifies for to get therapy services from birth to 3 years old) still cannot provide her with the proper services she needs... hence, we must continue to go private and exhaust our insurance
- We are in a battle with some of the medical providers over them choosing to not honor the charity system at Children's Hospital, even though they serviced Meagan at that facility.
- Brian's car sounds like his brakes are going, which means more money we don't have going to the car.
- We saw water leaking in our garage, and upon investigation, realized our whole kitchen sink/pipe system is completely faulty with several leaks.  The whole cabinet underneath is soaked and will need replacement, as will several of the floor tiles.
- I had to deal with an unfortunate circumstance where someone chose to act immaturely rather than responsibly, thereby throwing me in the middle of a situation I did not need nor deserved.
- Now that Meagan's surgery is just over a week away, I am starting to feel the stress of the anesthesia (she has not come out of it well in the past) , and anxiety about her recovery. I am also feeling stressed about missing out on my other girls for a week because although they understand to the best of their ability for their age, they also deserve my attention and presence.



While I absolutely agree others have worse circumstances, for us personally, I was honestly feeling pretty defeated this week.  I'm normally an extremely positive person, but the unexpected emotional turmoil on top of the financial stress started to get to me.  But then I remembered something someone had told me a long time ago.. "God will provide."  I kept repeating this to myself, and I would tell God every night "I trust in you."

Today was like any other ... wake up, try to catch up on chores around the house, spend time with the kids, work with Meagan...etc....before heading to evening Mass.  Brian was out doing the yard, and I was inside getting other stuff finished when I heard the doorbell.  I went downstairs to see who it was - and there stood Kaitlin.  My first reaction was frustration because I had just put Meagan down to sleep, and our other outside door was already open for her to easily come and go.  She could have come in that way without making any noise.  But, she rang the doorbell again, so I went ahead and opened the front door.  Kaitiln said "Mom! I got your mail!" in an excited tone.  I thanked her for getting the mail and closed the door.  I walked towards the kitchen and sifted through the envelopes.  I came across one that seemed like a personal card.  I put the other mail down, and opened the card.  Inside, I found a heartfelt inspiring note, and also a check.  I was absolutely speechless. Surprised. Frozen. The check would cover a lot of the expenses I had been stressing about... and the genuine words in the card lifted my spirits from all the emotional stress of the week. Now I know why God had made Kaitlin come to my closed door, instead of the obvious open one - because to come to my closed door, she had to ring the doorbell. He was trying to give me a "sign" that He was hearing my prayer, and was present with me through it all. God was getting my attention.

I started to think back on my "bad" week.  I started to think about the many times I had gone to bed in prayer, and trusting that God would somehow reach out to me.  Then I realized... He does. 

There was a reason that on this day, at the end of this week, I was supposed to receive this card.  This was God's way of telling me "I listen. I am here for you."  I felt such a peace at Mass tonight, and so thankful God has such wonderful people to work through.

So if things seem really tough, or you are having a down week (which everyone is allowed to have), just pray. Pray and trust. Know He does hear what you say...  He will take care of you through people around you who truly have your best interest at heart.  I want to say a heartfelt thank you to those who sent the card I received today.  It was perfect timing... I know God was nudging your heart, and soothing mine, all at the same time.

I now enter this new week with lifted spirits and a great outlook.  I am happy.  I know we are a great family, and we are doing the best we can.  I know we are good people,  love each other, and love our faith.  And I know because of all those things, God will provide. 

4 "firsts"

This week has been quite a roller coaster.  We had a health scare with our lovable Lab, Dudley, which was a crazy couple of days.  It has been very busy getting back to school and I feel like I haven't caught up quite yet.  In addition, I have had to deal with some unforeseen and unfortunate  issues this week... the kind of issues that result in a virtual punch in the gut.  So it's been a much busier than expected and a much more emotionally trying time than expected this week on top of prepping everything for Meagan's surgery in 2 weeks.  ( I will be in appointment and pre-op hell the next week and a half).  That said, there have been a lot of "firsts" this week that make all the stress take a back seat, at least temporarily, and I want to make sure I focus on those.

1. Anna started Preschool this year! She has been asking to go to school for 2 years now.   She has watched her older sisters go, attended their class parties, and was so excited for it to be her turn.  We have a lot of hand me down clothes, as you can imagine with 5 girls... but I always make a point to get each girl a special new outfit for their first day of pre-K.  Anna's favorite color is red, so of course you know her outfit had to have red in it.

 The big girls were SO excited for Anna.  They were very sweet, trying to prepare her for her first day.  Maura wanted to get in on the action too.

2. Meagan is actually taking an interest in her bottles now.  She still nurses most of the time, but she is starting to notice her bottle and react to it more with her hands.  Before about a week ago, I could prepare a bottle and she woudln't have a reaction to it until it got very close to her mouth.  Earlier this week I was meeting with my friend Lori.  Of course, Maura had to go to the bathroom for the 500th time, so I gave Meagan to Lori so she could feed her the rest of her bottle.   I came back from the bathroom, and Lori said "Did you know she is trying to hold her bottle?"  I looked over at Meagan and sure enough, she had her little hands around the top of the bottle! I had never seen that before! She was really trying to grasp it and hold it up.  I think in the near future, Meagan will be able to hold it all on her own. I was so proud of her! (Maybe I need to have Lori hold her more often?) :)

Good job Meagan!

  

3. Our second born daughter, Kaitlin turned 6 today.  I guess that's not really a "first"... but it technically is the first time she's been 6.  So that is exciting for all of us.  We let her choose her birthday dinner, and naturally, she chose Chipotle (her Godfather, Uncle Kevin would be so proud).  After dinner, we sang to her and she blew out her "6" candle on her ice cream cake.  She got some nice gifts from us, Nanny and Pop Pop, and Grandma and Grandpa.  All in all, she had a great 6th birthday. 

4. Lastly, since Stubborn Pants (I'm convinced that's Meagan's new name) is still refusing foods, I figured a little frosting couldn't hurt.  She really didn't know what to do with it.  Made a great picture though!

 It's amazing how you can really have a few days where you suddenly feel beaten down, especially when it is completely unexpected.  However, I realized tonight how many good things have happened this week with my family,  and I feel blessed with the amazing kids God has prvilieged me to raise.  I couldn't allow all the 'firsts' to be overshadowed by the unconstructive events of the week.  The good moments are what keep me going. (Especially when I see Meagan struggle to accomplish something new).  Good moments, like the four I mentioned above, light a fire in me to tackle the negativity head on, so I can continue to be the strong and stand up example my girls need. 

Toofers

So the week started off kind of "iffy" for Meagan.  She had been doing pretty well, but she started to have bouts of irritability that would come and go everyday.  She looked so sad.

\

She started to grab her ears, hit her head, and grab her shunt.  And she would do this repeatedly.

She actually started hitting her head so often,  I got concerned something was bothering her ... maybe with her shunt, or it was some sort of pressure issue.  My Megs, who is normally very "smiley on demand" (as those who have met her personally will attest to) was not even close to herself.

Wednesday, we met friends after the first day of school.  Even my good friend Lori commented that Meagan seemed "off" and very unhappy. Meagan continued this way through Wednesday evening.  Then, Thursday morning, I saw that all familiar look in her eyes. Seizure time.  40 minutes from start to end.  Way too long.  She passed out afterwards.

I was getting concerned something was wrong.  She just wasn't happy. She wasn't herself.

 But then today, Meagan seemed a little more happy.  She slept for 14 hours.  She woke up, nursed, and went back to sleep for most of the morning.  Upon waking again, she was actually cooing again... no... make that YELLING.  Making her presence known.  She started to give slight smiles again and bat at her toys.   Then, tonight, I was folding laundry in my room.  Kaitlin was playing with Meagan in her nap nanny... giving her toys, and letting Meagan reach for her hands.   Kaitlin ran into my room after a few minutes and said "Mommy, I was playing with Meagan and something hurt my hand! I think she bit me!"

Bit her? That was strange, I thought. But then it hit me....  I went to check on Meagan.  I put my hand lightly along her bottom gums and said... AHA! I think I found the culprit! :)

So, officially, at 11 months old, Meagan has her FIRST TWO BOTTOM TEETH!!!!! They have finally cut through her gums!  I'm hoping this was the cause of her discomfort this week.   I am not 100% sure... but in the name of staying positive,  we are going to go with teeth!!

So excited to celebrate this first for her!  Go Megs! :)

First Day!

The big girls had their first day of school yesterday. Reilly was very excited to enter 2nd grade because she finally got to use a backpack.

Kaitlin was very excited because she was going to the "big school" for the first time. She got to wear Reilly's old uniform.

It was quite funny watching both of them get ready in the morning.  Reilly was "old hat" at this. She was excited to get back, see her friends, and be with a new teacher.  Kaitlin was excited, but also apprehensive.  She had that "happy nervous" about her that only happens on your first day of Kindergarten, or your first day of high school. Kaitlin also copied everything Reilly did in the morning.  The way she tied her shoes, the way she ate her breakfast, and the way she did her hair.  Reilly leaned down at one point to pick something up, and upon standing, fluffed back out her skirt.  I watched Kaitlin, and when Reilly started to fluff her skirt, Kaitlin started to also straighten hers out.... for no reason other than she'd seen Reilly do it. 

HAD to have the same hair

They both had an excellent first day.  Kaitlin told me she talked to her teacher and told her she did Irish Dancing.  Reilly let me know she told the class she had seven people in her family.  We must sound like quite a bunch to those that don't really know us!

One mom messaged me later in the day and told me that the girls were so cute at carpool.  She said not once did the girls let go of each others' hand... and this must be true because when they walked to the car, they were still holding hands. It was the sweetest thing.

So two down, and one to go to preschool next week.  Going to be strange at the Gareau household only having the 2 little ones at home!

What To Do, What To Do....

Meagan had her swallow study this past Friday. We checked into Children's in the early morning.  They explained that Meagan would sit in a Tumble form feeding chair in between two xray - like screens so we could watch her swallow as she ate.  She would be fed a bottle laced with Barium, and then a tiny bit of pureed food laced with barium so they and the screens would show how things traveled down her esophagus.  Meagan has had feeding issues from day 1, and has started to be really rattly with gurgling when she sleeps after eating, so we needed to  make sure she wasn't aspirating fluids into her lungs.  The therapists wanted to make a plan as to how to move forward with Meagan's feedings, but couldn't do so without knowing she was in fact swallowing in a safe manner.  Meagan was hungry of course, since we couldn't feed her 4 hours before the study.  The poor thing had already had a busy week with 3 doctor's appointments, CT scan, and therapies. And we have seen a few of the evil "S" words (seizures) pop through as well in the last 2 weeks. She was worn out!


Following the swallow test, the SLP told me that Meagan had a little fluid gathering in her cheeks when eating, but basically swallowed the liquids OK (which didn't surprise me since she nurses well and now takes bottles.)  She didn't take much of the food, but the tiny bit she did swallow showed she was not aspirating.  This was good news because we don't want her taking any foods into her lungs.  No aspiration into her lungs means we can keep pushing forward with speech and feeding therapies to hopefully help her take more baby food.  The one *little* part of bad news is it gives us no clear answer as to why Meagan won't take pureed foods. When I have tried chunkier foods or thickening her bottles, she ends up getting sick - sometimes to the point of throwing up milk she has eaten a few hours before.  We will get the full results of the swallow study at her next doctor's appointment so maybe we'll get some more insight at that time.

Waiting at the Pediatrician for a weight check

If Meagan wanted to nurse and take bottles for the next year, it wouldn't bother me one bit.  But the compounding issue is that Meagan has lost weight again. We had another weight check the same day and found she had lost 6 ounces.  (down to barely 14lbs again).  If she would gain or stay stable in her weight, there woudln't be as much of an issue with her eating.  As I said, she still mostly nurses, which, I do not mind.  However, with her nearing 1 year old, as she continues to grow, and also work very hard at her therapies, she is going to continue to burn more calories and need more nutrition than I can provide alone.  So while she can nurse when she wants to, we need to have a plan in place for getting her on a better eating schedule as we enter this next Fall.

I called and scheduled a follow up appointment with Dr. P (her GI doctor) so we can sit down and re-evaluate Meagan's situation with her eating.  I will keep trying foods with her everyday, several times a day.... but as of now there seems to be no progression with the food. I thought last month she was starting to finally take a little bit, but that was short lived.  Hopefully, upon meeting with Dr. P we figure out a good plan for Meagan as she enters toddler-hood next year.  I want her to  eat... however, I also don't want her to hate the process or associate eating with anything negative. So that is why I feel a good consult with Dr. P will open up other options for us to help Meagan gain weight more consistently.   Meagan is Meagan, and we have to work on her schedule.  Dr. P putting and end goal in place for us will be a great start to realize what we need to do this next year to ensure Meagan is getting the proper nutrition she needs to keep growing and thriving.

Nursing and bottles will continue to be the main source of her nutrition, since she does both comfortably.   We will also continue to offer foods everyday and see if things "click" as we work through her speech and feeding therapies.  Beyond that, I know Dr. P will help us figure it out and have a good plan for Meagan to move forward.  The most important thing is that Meagan be the healthiest she can be and not continue to lose weight.  As for what to do.... time will tell.

Worn out from her busy week!



On We Go - Scan pics and news

We had a follow up today with Meagan's Neurosurgeon, Dr. R.  Meagan had been increasingly fussy since her last shunt adjustment, and had also started hitting herself in the head!  She was also shaking her head side to side in her nap nanny.  Dr. R ordered another CT scan to make sure her vents hadn't ballooned up and were causing her pressure or discomfort.  Her CT scan today showed ZERO movement in her ventricles.  Dr. R said this is both a good and bad thing.  Obviously good because we dont' want them to get really huge again and cause her problems... but it's also bad because with her skull fused, she still is at a higher pressure, and no change in the ventricles means they are not ballooning up like we originally thought.  In any case, we discussed the pros and cons of changing her shunt again... but we decided in the end to let her ride out this setting a while longer.  She is already going to have a lot of change with her surgery, so why not leave everything else the same.  I am totally comfortable with this decision. Plus, she has had several pop up seizures this past week, which could very well be the culprit of her bad behavior.  But with the recent shunt increase, we had to rule that out as a cause first.  If she is still fussier than normal, seizing, or banging her head, we may follow up with the Neurologist and see if her meds need to be tweaked.

We moved on to surgery talk.  September 4th is still the day. Meagan still has had no change in her skull bones since they upped her shunt pressure so it is definitely "official" now that we are moving forward with the procedure. We got all our instructions, what time to get there, and when our pre-op appointments are with anesthesia, etc..etc... We should expect 3-4 days in the hospital, and then have a post-op appointment scheduled two weeks afterwards. We talked about details of the surgery, and what to expect with recovery. All in all, it was a great appointment.

With that, I'll leave you with a few images.  I realized it's been a while since I posted any of Meagan's scans, so here are a few of her recent ones.

First, Meagan's CT from birth: (see all the black? Yep. That's fluid)

Now Meagan's CT scan from January (left) compared to her CT scan from today (right).  Definitely some good brain growth going on.

And finally, two images from the 3D reconstruction of her skull.  You can see in the first 3 of her plates that are severely overlapped and now fused together.  In the second photo, you can see where her shunt enters her skull.

And to end on a completely happy note, Meagan's Godfather, her Uncle Mike, just came home from Afghanistan!!! We are thankful for his service in protecting our freedoms here at home, and also very thankful he came back to his wife and daughters safe and sound!