Craniosynostosis Reconstruction Surgery and Recovery Part I

Meagan got checked in this morning around 6:30am.  We went back, got her vitals, and got her ready to be taken back to the OR.  Dr. R and Dr. W came in to go over details of the procedure.  They explained how they would be breaking apart her sutures, and leaving "islands of bone" which would then hopefully expand to grow back together at a later date without causing pressure on her brain (as her current overlapping was doing).  Dr. R explained his part of the surgery as taking Meagan's skull apart and taking care of the brain, following which Dr. W (the plastic surgeon) would come in and reconstruct her skull, leaving spaces where it had previously been fused with these "islands of bone" Dr. R talked about.  We signed the last few consent forms, and then waited for the OR nurse.

Daddy got her dressed in her gown and socks (which were way too big by the way).  She was all set, and around 8:30am, her OR nurse came in to take her back.  She was awesome.  Turns out she had just finished up her second tour in Afghanistan, and was now working at Children's.  I was very happy we got her.  She was direct, down to earth, and very personable. We walked with the nurse and Meagan to the OR doors.  Brian and I gave Meagan kisses and told her we loved her, and watched her disappear back into the OR.

We went back to our room to wait.   We got a call letting us know that Meagan had gone to sleep ok and surgery was starting.  The next report was towards the end of Phase 1 of the surgery, round 10:55am.  Then we waited.  And waited. And waited.  Finally around 2pm, we got word she was out and being wheeled to the ICU.  We got to see her briefly in the hallway on her way to her room.  We had to wait about an hour for her to be settled in and the physicians to do their initial exam.  Then we were walked up to the PICU.  She was screaming.  The nurse was trying to calm her down. Meagan was CRAZY. I took her from the nurse, and for about 2 minutes, she calmed in my arms.

 But after only a few minutes, she was crazy again.  Very restless, arching her back in my arms, throwing her head back, and screaming. She would lift her knees and legs and slam them on the bed. There was no calming her.  

The ICU doctor finally came in.   She said Meagan was very agitated coming off of the anesthesia.  When I asked about pain meds, considering how fussy she was, the doctor told me she already gave Meagan morphine, and had even given an extra dose since she didn't calm down.  She said there wasn't much else they could do.  I was a bit frustrated because of course, I didn't want to over medicate Meagan... at the same time, she just had major brain and skull surgery....and I knew she had to be severely uncomfortable, and frankly, disoriented.  She also couldn't  open her eyes, which was HUGELY frustrating.  She is normally such an alert baby who loves to look at things and people, that it had to be extremely hard for her to not understand why all this was happening.

Meagan's behavior was getting to the point of being ridiculous. Something had to be done.  She had now flung off her arm guard from slamming her right arm on the bed so hard... her other arm was flailing so badly, it knocked out her one line that went directly into her artery (Thank GOODNESS it clotted or it would have been a much bloodier mess), and she kept arching in bed writhing her body and kicking her legs, so hard that it was pulling the oxygen tubes out of her nose and her other lines out of the monitor. She was screaming and thrashing.

At this point I was getting angry and was trying to get the ICU doctor to demand she give Meagan something to help calm her down. Not more  pain meds, but something to take the edge off while she was adjusting to recovery. She was obviously uncomfortable, and every limb was taken up with IVs or bandages, so she had no way to soothe herself. The ICU doctor was not receptive to my request for a calming med. 

Luckily, just a few minutes later, Dr. R, Meagan's Neurosurgeon, happened to be on his way back to surgery but decided to stop by and see how Meagan was doing.  I am so glad he did.  He came in and saw the state Meagan was in. He saw her crying, thrashing, and inconsolable.  He immediately said "Oh poor baby" and agreed she could not stay in that state all night.  He picked up his phone.  He called the ICU doctor and asked her for something to help calm Meagan down.  The next thing I knew, the nurses were in our room giving her Ativan, and within a short time period, Meagan calmed, and fell asleep.  I am so thankful Dr. R stopped by on his way to the OR... and thank goodness he is such a great advocate for his little patients!

Finally resting comfortably

.

As for now, Meagan's head is wrapped very well.  They did not put in a drain because Dr. R said that actually causes more risk to kids with shunts. We should be able to have the dressings removed in a day or so and learn how to apply the medicine to her incisions.

She is doing much better now that the Ativan has kicked in.  She still wakes up and moans or wimpers, but then she will fall back asleep.  This is a huge improvement from her earlier state.

The bright part of the evening, was Meagan getting a few nice surprises today.  Meghan, another little Hydro girl, sent our Meagan a little "goody bag" with special treats for Mommy and Daddy, a balloon, and also a really cute bear to cuddle while she gets better.  Also, her good buddy Claire stopped by with her parents, Brad and Amy (I have mentioned them before and you can read more about Claire here.)  They are dear friends.  We had fun visiting with them, and Meagan really enjoyed seeing her friend.  Also, Meagan was really thankful to Claire because she brought her very special hospital gown for Meagan to borrow while she is here!  Meagan also liked the very cute brightly colored happy animal for her to look at in her crib.

Meagan loved seeing her best friend Claire

Meagan really enjoyed her special gifts from Claire and Meghan

 I am going to make sure the nurses stay on top of Meagan's discomfort.   If Meagan does well through the night, then tomorrow they could step her down to a regular recovery room and move her out of the ICU.  So fingers crossed tomorrow she improves and we can move.  Her head and eyes are very swollen, and I know this is only the beginning of recovery. She is still in a lot of pain, but, as always, she's handling it like a trooper.

Love you sweet girl!

What Exactly Is Going On?

I found an excellent description of what Meagan will be going through and thought I would post it here:

Cranial Vault Reconstruction also known as CVR or traditional surgery is  a complex surgery and will require the use of both a pediatric neurosurgeon and pediatric craniofacial surgeon.

Some surgeons prefer to do either just the front of the skull(anterior CVR) or just the back of the skull(posterior CVR). While other surgeons might choose an overall CVR depending on the degree of reconstruction needed. In some cases a front orbit advancement(FOA) is performed to reconstruct the orbits around the eyes. FOA's are hardly ever performed without an accompanying CVR. 

An incision is made in the scalp from ear to ear in either a zig-zag pattern or u-shape. The skull bones are then cut and removed by a pediatric neurosurgeon. A CVR should never be performed without the neurosurgeon who's job is to protect the duram that surrounds and protects the brain. A pediatric craniofacial surgeon then will reconstruct and piece the skull bones back together using plates, screws, and stitches. Most of these foreign objects are absorbable which means as the new bone grows the plates and screws will slowly disappear.

The pro's of CVR Surgery are:

• Immediate and often lasting correction of the deformity without any visible or palpable bony defects
• Drastically reduced occurrences of secondary surgeries
• More qualified surgeons available to perform CVR surgery
• CVR is most successful when performed on children younger than one year of age but is highly successful when performed on even older children
• Any complications with the duram or blood loss can be immediately handled.
• Most successful treatment for multi-suture synostosis and severe cranial deformity.

The Cons of CVR Surgery Are:

• Blood loss with the need of blood transfusions(although this risk can be greatly reduced with the use of procreate shots and blood recycling procedures.)
• Highly invasive surgery that last 5 to 9 hours typically
• Plates and screws most often are needed
• 48 hour stay in PICU required followed by 3 or 4 more days in hospital
• Swelling and bruising

In Other News..........

Meagan went back to the OR around 8:30am.  Around 10:55am, Dr. Reisner (Neurosurgeon) came to see us... said Meagan did well the first part of the surgery.   He has mostly finished his part of the brain surgery.  He said her ridges are all broken and her bones removed. She did require a blood transfusion, and could need another before surgery is over. She seems to be tolerating the anesthesia fairly well so far.

Dr. Williams, the pedatric plastic surgeon, is now going to start to work on putting Meagan's head back together. Dr. Reisner went back to the OR in to be with Dr. Williams while he works. He said at least another 2 hours, but will update us as they work because that can change... could be more or less.  Will update as we hear more. 

Meggy before being wheeled back

Little Things to Some.......

We meet so many people throughout our life. Often times, we meet so many different people, we end up remembering those we know by little things that represent who they are.  A hair color.  A style.  A mark they may have on their face.  The way they are shaped. The way their features are configured.  All of these little things come together to form the person we know, and also help us remember them. Each and every one.

Tomorrow is Meagan's surgery.  While I'm not a "big" worrier, I am very anxious.  Yes, of course about the risks and dangers of the surgery.  But I have digested that, researched it, and come to peace with it because this is a necessary procedure.

What I am referring to is something that many may not relate to.  Meagan will also be physically changing tomorrow.  Some of her little physical things and attributes I have so enjoyed this year as part of her, will no longer be there tomorrow.  If this surgery weren't necessary for Meagan's brain health, I would never have it done for her.  If there was no pressure or threat of brain restriction by leaving her head alone, I would leave it alone.

See, it may sound crazy to some, but I love Meagan's head.  I absolutely love her head.  I love every ridge.  I love every overlap.  I love every crooked, bumpy, and "imperfect" part. I love how every line on her skull tells a story.  Every ridge is a battle scar.  And every bump shapes exactly who Meagan has been this past year, and what she has been through to this point.

That said, there is a tinge of sadness in me tonight.  Because after tomorrow,  those lovely ridges, bumps, and lines will no longer be there. Those lines and bumps that told Meagan's story for a year.  That guided me in knowing what she liked and disliked.

I learned that along her top ridge, she loves to be rubbed there to go to sleep.... along the left side of her head, if I follow her "bumps" there from her bone, she is ticklish. 

 I learned along the back of her head, she really doesn't like those ridges touched, and gets really mad if you rub them. 

I learned that along her forehead ridge, she loves to be softly rubbed when she is sleeping... or if she suddenly wakes, you can rub along that same ridge and she will fall back asleep.

I know physical attributes don't make up who Meagan truly is.  But, they are what we remember when we know people.  They are what we study, rub, and caress when we hold our babies, or rock them to sleep at night. And for Meagan, her ridges are what has defined her physical being to this point, and are part of her appearance that I truly have loved and cherished.  They are outward signs that have let me learn about Meagan, and learn about her journey.

So after surgery will be a new learning curve for me....getting used to her "new head."  I will learn new places she is ticklish, new places that make for good head rubs, new places to soothe her to sleep, and new places she doesn't like to be touched, all without her "road-map" of bones and bumps to guide me. A lot of little things will be changing tomorrow. And they are truly little things.  What is important is that Meagan is healthy, and comes through surgery safely.  What is important is that we allow more room for her brain to have the chance to grow.  But at the same time, little things to some, signify a big change to someone else.  And this is one of those moments.


Will I miss those beautiful ridges in Meagan's head? You bet I will!! So tonight I plan on cuddling her tightly and running my hands through her thick curly hair, being interrupted by those bones and bumps, and cherishing how her head feels one last night. And in the end, I do know Meagan will still be Meagan. My sweet, cuddly, beautiful baby.  And no surgery can ever change that.

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!