EVD day 6 - Waiting... and Hoping

I think sometimes it's hard for those outside of the "brain injury" world to understand exactly what people go through who struggle with brain issues.  Sometimes people look just fine on the outside, but have a hidden injury or condition they live with daily, and this is certainly true of children like Meagan who have hydro.  I think those outside our day to day hydro world also don't realize what a true roller coaster this is - especially when in the midst of treatment for acute issues that are happening.  People often say pictures speak louder than words - so keeping that in mind, this was Meagan yesterday:

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And this is how she woke up this morning:

Dealing with a brain condition or injury is truly a process, in the most literal sense of the word.  Meagan had a GREAT day yesterday (for which we are very thankful).  It was the first full day we had no vomiting, and the first full day we really had a basically good mood the entire day.  It was also the first full day we saw her take all her feeds well and she even had a bottle for the first time in almost a week.  Brian, his mom and the girls stopped by to visit.  Meagan had a blast seeing her sisters, and the girls of course immediately jumped on the bed with her to hug their baby sister.

It's times like these that I really notice how close they all are to each other.  There just isn't "normal life" with one of the 5 missing.. and I love that.  Of course, visits like this are also "real"....and we still have giggles and sibling rivalry alike, listening and disobeying at times.. just like at home..but I love that too because it's life.  Matter of fact our nurse walked in just as I was talking with Maura for not listening - hey, welcome to a big family! Always lots going on at once :)  I will say, though, that the girls were overall very well behaved.  They haven't seen me or Meagan in a week - they have been working hard at camp and dance class - they have missed Daddy at work and had Grandma home with them all week.  It is a LOT of adjusting for 4 little girls under 9. I'm always impressed how well they do, though.  These times, although inconvenient and difficult are how they learn what it is to be in our "new normal."  It's how they learn that sometimes life throws you curveballs and you just have to go with it because in that process you know something good will come out of it - in this case, help for Meagan, their baby sister (whom they spoil by the way, and, rightfully so).

(These two - inseperable.  All the girls are close, and close to Meagan.  But Maura is closest in age and home with her most often during the school year.  Everytime just like clock work, Meagan always asks for Maura ("Mo-Rah", as she says), by name.  She absolutely loves her big sister.)

The rest of yesterday went well.  Dr. Reisner was happy with Meagan's scan - her ventricles have opened up a little bit, so he is glad we have something to work with.  Lots of decisions for him to make as to how to keep it this way over the weekend, so keep him in your prayers as he decides what is best for Megs next week.  He stopped by last night to say bye to Meagan.. he just rubbed her head and said to her "I'm so glad you are here."  He is truly a special soul.

Later on, Child Life came by and offered Meagan a new toy to play with. She had a blast.. she chose the pink computer that interacts every time a button is pushed.  She was pushing buttons all afternoon making letter sounds, numbers, and seeing what noises and music would play because of her actions.  It was very nice to have a different toy to look at after a week with her toys we had brought from home.  She seemed to really enjoy herself.

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Fast forward to today.  As soon as Meagan woke up, I just knew.  I knew it was going to be a very rough day, at least at the start, for her.  She looked exhausted even though she had slept well.  She whined and seemed lethargic and acted like she was in pain. We tried laying down, sitting up..etc.. but she was just miserable. Before I knew it, she was crying and then came the throw up.  It wasn't as much as two days ago, so that's good, but, still, I hate to see her get sick.  Afterwards she was pretty irritable.  Crying, hitting her head, and acting up... We finally just laid her back down.  She looked at me and said "Mama, ug." (Mama, 'hug').  So we did that.. just hugged and snuggled for a little while.

Meagan not waking up well

I did call in the nurse and she gave Meagan some Zofran to help stop any more vomiting... she also gave her some pain meds and Meagan calmed down in a little bit just in time for my friend, Lisa to visit.  She brought me lunch (yum!) and a sweet stuffed dog for Meagan.  Soon after Megs dozed off to sleep again and slept for a long time.  

Meagan slept and slept the afternoon away. It's actually a good thing because I would rather her sleep with meds and be pain free to let her body adjust to the new pressures than be awake and uncomfortable.  

The ups and downs may seem crazy but it just is what it is.  This is the waiting...and waiting for the body and brain to adjust to totally new sensations can sometimes mean temporary pain or discomfort.  It is hard to watch your child hurt, but it is easier knowing this is on the path to better long term management of Meagan's hydrocephalus and subsequently her symptoms we have been having these last few months.

Once she woke up from her long sleep, she seemed content.  She opened her eyes and looked around.  Then she spoke.  What she said surprised me for two reasons. First, what she was asking for cracked me up - I had to ask her again what she said so she would repeat it, and yep.. it was what I thought I heard. I grabbed my phone and then continued to ask her and record it.  I found what she was wanting hilarious! I hope it makes you smile as much as it did me.  

Secondly, as funny as it was, the more amazing thing about what she said was the fact that she was almost using a full sentence.  What I'm about to say may sound silly or presumptuous, but, I think we are turning a corner.  If you remember last October, when we finally fixed her shunt issue she woke up from surgery and immediately said "Aweshum!"  Speech was the first indicator we had alleviated the problem, and that was really the start of her speech taking off these past 6 months.  Today starting from waking up, I noticed she has been using longer phrases and almost sentences.  It's amazing.  I think we are going to see some big changes in her speech over the next 6 months.

What Meagan said when she woke up:

From that point on, she did very well for the rest of the day. She was happy,  content, smiling, and enjoying reading books with me or watching cartoons on TV.  At one point, when I got up to use the bathroom, I actually turned around and caught her sitting up for the first time on her own this week!  In true Meagan style, she was also almost getting herself into trouble.  She was leaning over trying to get to her pump and was even saying "Beep! Beep!" in the tiniest little voice.  Luckily, I caught her before she could actually touch any of the buttons......but it was quite funny.

At that point I called in the nurse back in and had her go ahead and clamp Meagan's drain for a while so she could sit up and explore. (When she is on the drain she has to stay in one position so the results are not skewed).  I was happy Meagan seemed interested in looking at things and sitting herself up for a bit.  I had baseball on the TV and she ended up sitting for about 10 minutes switching between looking at a few toys on her bed and then going back to look at the TV.  She even started muttering and singing to herself.  She is such a ham. (And yes she is trying to sing "Let it Go")

After those 10 minutes, Meagan started to topple over onto her head.   I went over and laid her back down in bed. Even just that short time upright in bed completely exhausted her.  It surprised me at first, but, I have to remember she's dealing with a lot more fluid in her head now, so the slightest activity is going to tire her out until we can build back up some strength.  I told Meagan we had to stay laying down now because her body was tired and she was falling... and we also had to reopen the drain.  She showed me how she felt about that....

Overall, today in and of itself was quite a roller coaster... but so is this whole process.  Waiting is just part of life, but waiting always brings joy.  Sometimes it's the hardest thing to do, especially in a situation like this where I see my baby going through pain at times, but, I know it is going to open up so many more opportunities for her both with comfort and development.  I'm amazed at the things I heard her say this evening - I'm seriously wondering if the relief Dr. R has started this week with equalizing her pressures is sparking yet another jump in her speech.  Considering all her delays, her speech is her strongest skill - so it wouldn't surprise me if that's where we see the first signs that she is in fact at a better intracranial balance.  I don't want to count my chickens before they are hatched... but I'm willing to bet (a little) that it is in fact directly related to this week long shift we are trying to enable between her brain and fluid.  

Monday can't come soon enough! I'm anxious to get her repeat scan and have a sit down with Dr. R about what the surgical  plans will be for maintaining these new settings.  As it stands now she is 3 levels above where her current shunt can be turned... so I'm interested to hear his ideas on what kind of shunt system he will construct for her.  Until then, I will keep waiting... but now I am waiting and hoping... because there's just really no other way to be. Meagan showed me that today.

EVD day 4 - Climb A Mountain, Roll Down a Hill

Before I start, I want to remind you all of the tshirt fundraiser for our dear friend and Hydro mama Sarah.  Here is the link: https://www.booster.com/sarahstrong  .... they only have 17 more shirts to sell to reach their goal - I'm POSITIVE we can do this for her with the large audience that this blog reaches.  Spread the word to friends and family - let's continue to show Sarah love and support the way we can.

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Yesterday (day 3) ended up ok but Meagan did vomit again twice.  She was not a happy camper throughout the evening and had a LOT of trouble sleeping last night.  Granted, we had no vomiting during the night, so I will take that.  Dr. R came in early and turned her up her pressure again.  Meagan was ok for a little bit but then became extremely irritable.  She was so out of sorts, we went ahead and had the nurse give her some pain meds.  Within several minutes, she fell asleep (hopefully pain free) and slept for hours.

Finally out

Once she woke up it was nearly after lunch time.  She still had a full soft spot and you could tell her head was bothering her, but she wasn't nearly as fussy or as bad as before.  The big girls are enjoying swim camp that Nanny and Pop Pop gave them to help them be distracted this week and also have fun, so today while the girls were at camp, Brian's mom (who is caring for them after camp this week) came to see Megs.  She brought a cute book and Minnie Mouse for her (Meagan's favorite).  Brian's mom read to Meagan for a while and then she was also able to call Grandpa on the phone and let Meagan hear his voice for a little bit.

Grandma and Megs

Grandma letting Meagan hear Grandpa's voice

The big girls enjoying swim camp from Nanny and Pop Pop

We had a few other visitors today as well. Our other dance friends are at camp but one of their moms came to see Megs.  She brought some very cute colored elephants to hang from Meagan's IV pole so she had other things to look at, and a few other comfy gifts.  Two other hydro families we know also visited.  Ann and her son Cass happened to be in town for appointments so they stopped up to say hello and brought some cute gifts and snacks.  Also, another hydro family we know Laura and Troy stopped in with their son Owen.  They brought Meagan some cute gifts as well including a book and homemade food for us.  Meagan is certainly very lucky with all her friends  - and a bit spoiled too. But, that's ok.

Meagan loves all the colors to look at!

Cass saying hi to Meagan

Owen chillin while he visits Megs

Meagan started to become irritable again this afternoon.  She was extremely restless and had glassy eyes while she winced and would hold her head.  This continued on for a while.  Every so many minutes, she would have moments of calm trying to sleep ... but then her body would jolt and she would cry again and scream.  After about two hours, she ended up vomiting again and then seemed to calm.  Once she was cleaned up, she did finally relax and doze off to sleep.

Not feeling well again by the afternoon

The day today was filled with climbing a mountain and finally reaching the top... but then moments of rolling back down a smaller hill.  I'm ok with that as long as she is overall comfortable and the mountains get smaller while the hills get further and fewer in between.  This is the tricky part of managing a "brain kid."  When Meagan is having problems, she can have a terrible day, or terrible parts of the day, or terrible night, but then have other parts of the day/night be ok.  She can be writhing in pain in the morning, and by afternoon be giggling and having fun.  This is the pattern we are seeing here with her - most likely due to the mornings being the most stressful times when her pressures are increased.  The brain is such an amazing and mysterious thing - it can be confusing treating brain problems because of this "see saw" pattern in which symptoms often present. The key is to focus on the issues, try to connect the dots, and come up with the best game plan to make that see saw a lot less rocky.

 The game plan for tomorrow morning is an early CT scan to check on Meagan's ventricle size.  We want them to have ballooned up larger.  If he is happy where they are, he will leave her at that setting over the weekend to stretch out her ventricles.  If they have grown but he still wants them to balloon more, he will turn her up again and then leave her at that new higher setting for the weekend to expand the vents. If they are still slit, it's a whole other ballgame so I'm not even going to address that right now.  We are hoping to see this has worked to expand her pressures a little and that we can move forward from there for a surgery plan to put back in a shunt system for her that will work better for her.  So we shall see what the morning brings...

So blessed to have so many sweet friends 

**** I realize in the first post I never really detailed what the EVD was.  I provided an informative link, but, here are pictures of Meagan's EVD.

A shunt can be externalized through the belly or brain - in Meagan's case, hers is externalized from her brain.  Her valve and catheter are still inside of her, but the orange part is coming from her ventricles and connected to a sterile tube that drains her CSF to the outside of her body.

The CSF drains into this tube which is measured in mL.  Once the tube becomes about 3/4 full, the nurses record the amount of fluid and then unclamp the tube which drains into a bag below.

Once the bag gets really full, it also then gets disconnected from the tube and disposed of properly.  The nurses add a new bag and start all over again.  Typically they told me they empty it every 8 hours but Meagan's is emptied about every 4 hours.

Sarah Strong

I know I said I wasn't updating the blog daily, but this is important.


I have mentioned other Hydro families on here before, and Sarah's family is one of them. As you recall when we make trips to Ohio we see her and her two girls, one of which is also named Meghan and who also has Hydrocephalus like our Meagan.  (You can read all about Meghan's story and Sarah's fight here on their family blog: http://jascawleyfamily.blogspot.com)

Sarah is an absolute joy, a true friend, and a spiritual and honest soul who works hard, prays hard, and fights hard for her little girl, Meghan.

Well Sarah is having to fight a little harder these days.  Sarah is now also battling breast cancer......

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Summertime is a time for fun, joy, and hanging out with family.  It's also a time to get that new tshirt or tank top to soak in the warm weather. Well this summer, I would ask you to skip all the mainstream stores and instead get a shirt here:

https://www.booster.com/sarahstrong

All donations from the shirts go to Sarah and her family to help her in her fight.  Being a Hydro mama myself I get how stressful it is both emotionally and financially to have a child with challenges, but I cannot imagine having another battle on top of it all.  Sarah is an amazingly strong, faith filled person....I have no doubt she will kick this cancer.... but in the meantime, get out a mere $28, order a tshirt, and show her some love.

 Just do it. She does it everyday.

We love you Sarah!

EVD day 2 - Adjusting

Day 2 went better than the previous night.  Meagan had some trouble keeping up her blood pressure so there were a few scary hours in the early morning.  Her pressure had dropped to 80/28 and the nurses were concerned.  They tried to wake her, but we could not get Meagan to stir.  After redoing the blood pressure with no change, and Meagan still lethargic they started to push more fluids and sodium to bring the numbers up.  We got it to about 90/40 when she would finally start to open her eyes if they startled her, so the nurses were comfortable with that and just monitored closely the rest of the early morning hours.

 Dr. R came in at the start of rounds to check on her.  He was happy thus far with how she was draining and decided he would once again increase the pressure in the drain. She tolerated it fairly well, mostly sleeping, until later today when she became sick.  She just seemed uncomfortable.  Then I heard the heart rate monitor beep, then I heard her heavy breathing, and I knew it was coming - she threw up all over her bed (of course a mere hour after we had just changed it).  She seemed relieved after she got sick, so most likely it was head related.  Once we got her cleaned up and back on her pillow, she looked glassy eyed again.  I got a bag just in case, but after a few minutes of heavy breathing she ended up passing out asleep rather than throwing up again.

She slept quite a while and then woke up in a much better mood.  She was almost "delerious" acting this evening - arms and legs quite restless, eyes darting around, talking a lot but with much more slurred speech, sticking her tongue out a lot and playing with her teeth and tongue making faces..etc.  It sounds silly but it's not her "norm" so they are just watching her in case this is her way of saying "too much" to the pressure.  Honestly, seeing her this way, though, is better than her screaming in pain, so I will just count it as a positive.  I'm sure her body and brain are going through a lot trying to adjust to the new pressure settings and every time it gets ramped up it's another adjustment that needs to manifest physically somehow.

This was Meagan most of the afternoon, 

smacking her lips or playing with her mouth

And of course we had a silly face too

The day was scattered with a few visitors - in person and from afar.  We had a few hydro friends send sweet gifts (and yummy snacks for me) to offer some cheer.  An old Hydro friend visited and brought me several meals for the week and had a nice visit with us.  She also brought Meagan a special Curious George which Megs seemed to really like.  Lastly, one of the girls' dance teachers decided to come by and bring lunch.  It was nice to have a visit with her and get some "adult conversation" and a brief mental break amid the medical jargon and focus on Meagan's needs.

Snuggling her gifts from friends

One of the Burke Connolly Irish dance teachers shares some smiles with Megs

Dr. R stopped by once more to check on her since she had been sick. He said he would return early in the morning to bump up her pressure once again and we would see how day 3 would unfold. Since her vomiting hadn't been continuous he said we will just chalk it up to her trying to adjust and as long as it doesn't increase or get more frequent we will tolerate some illness along the way. I was fine with that - he had warned me that along this process we could see intermittent seizures, vomiting, lethargy..etc.. as her brain and body try to tolerate the pressure increases, so we will just keep a close eye on that.

Megs finally calmed down from her crazy restless behavior after about 3 hours, and dozed off to sleep. Hopefully tonight will be uneventful and we will start day 3 with a good foot forward :)

EVD Day 1 - Black and White

Whew. It has been quite a long day.  Meagan's surgery is done and now starts the "harder" part.  I'm too exhausted to write anything profound but wanted to update our friends and family, so here is our day in black and white.

Waiting with Mommy

- This is how our morning started out.  I woke up to Meagan screaming and saying "ow" over and over again.  I have never been so glad to know that today was surgery day and the start of (hopefully) and new (and better) plan.

What I heard in the dark this morning

- Meagan was fairly upset all morning.  She typically gets upset at the hospital but today she had started off that way and was obviously uncomfortable.  What a day to have a pain episode - "bring on surgery" was all I could think as we made our way to the hospital.  We checked in. All registration went smoothly and she was whisked back quite quickly to the nurses to check her in.

Not happy about her surroundings

- Once we were in our room Meagan was hysterical - in the upset sense, not the funny sense.  She was crying still, fussing, flailing and just about every other behavior you can think of.  She finally pointed at her chair and said "CHAIR!! CHAIR!!"  I sat her in her chair and she calmed down.  She then said "ok bye"... I will give it to her - the kid is smart.  She assumed sitting in her chair = moving = going.  Even though we weren't going anywhere, I sat her in her chair for a while to help keep her calmer and let her relax a bit.

Thought she was so smart asking to go back in her chair

- Dr. R came in and explained what he would be doing.  We signed the papers, we discussed what our hopes are for the outcome of this procedure and the following weeks and then off she went to the OR. There was an emergent case that came in so she got bumped for a little bit, but soon enough she was moving right along.

Getting in a last snuggle with Daddy

- Surgery took a bit longer than expected.  The OR nurse said Meagan went down ok and was doing well but Dr. R had to go slowly.  He said that Meagan's ventricles were so slit like that Dr. R was being extra careful to not slip the catheter out of the ventricle for fear he would not be able to reinsert it.  I will admit, that was quite scary to hear.

 So tired but ready for this step

- Once Meagan was out, we were sent off to her room to wait for her.  After over an hour had passed we finally got a call from one of the nurses that Meagan's IV had crimped and stopped working so they were waiting on the IV team to come and re-stick her in a more sturdy place.

- About an hour later Meagan got up to the room.  The external drain didn't look too bad - the tricky part is going to be keeping her from grabbing or pulling at it accidentally.  We have arm braces just in case they are necessary but for now we are just watching her closely.  She is very sleepy/lethargic and goes between that and suddenly holding her eyes and being really fussy.  We will see how it goes through the night.

Stitched nicely so it's not bothering her too much

- Lastly, we already got a lot of information about Meagan and her particular situation.  Not only do we have the problem of the slit ventricles, but Dr. R said that now it appears Meagan has both forms of hydrocephalus (communicating and non communicating) going on, not just one. Dr. R said that because of the enormous pressure Meagan's brain was under at birth, and subsequently how it has fluffed out and the problems she has encountered along the way, there is scar tissue along the outside of her brain and also within her ventricles.  I actually found relief in this revelation because although a nightmare to tackle treatment-wise, it gave me an explanation for Meagan's "see saw" type of reactions we see.  Her trying to balance two types hydro now made sense. Dr. R also said that Meagan's catheter is extremely fragile in her ventricles - her ventricles are so slit like and collapsed that we need to be very careful it doesn't slip out for fear it may not be able to be reinserted.

Dr. R explaining Meagan's complications and 

what he hopes to do with the EVD

- The plan for now is to slowly increase Meagan's drain each day by a little bit in hopes we can pop open those ventricles more and more while maintaining a balance of tolerance behaviorally.  Once she reaches a pressure setting Dr. R feels is a good balance for her, he would then need to reinsert a shunt system that can handle such a setting.  He told us straight forward it was highly likely she was going to have and need at least 2 valves, if not 3.

Resting after new meds

- If Meagan's ventricles do not expand at all, then we are looking at true Slit Ventricle Syndrome.  This would be the hardest to navigate because since her ventricles do not move at all, it means we cannot manipulate symptom control or comfort through increasing or decreasing her fluid level.  The typical "immediate relief" fix for this issue is a CVR, which Meagan already had done in 2012.  So in her case, we could be "stuck" with quite a dilemma if we are truly looking at full on Slit Ventricle Syndrome.

Not draining too much yet after a few hours...we will see...

- Dr. R plans to continue with the increased pressure and recheck her ventricles as we go along.  He expects it to take one to two weeks.  He said, rightfully so, we are "in a marathon right now, not a sprint."  Boy is he right.  Lots of information and lots of outcomes to ponder.  Hoping the ventricles open up nicely and we see my sweet girl starting to get some long term comfort.



Snuggling Bear. Bear makes it all better.

Lead With A Smile

This last week has been extremely busy getting things in order at the house and running errands....Laundry, rooms cleaned, grocery store,  etc..etc.. We have a lot going on with Meagan's upcoming hospital stay and we are officially in summertime which means budgets are tight as I don't work in the summers.  We also had an incident with our van as we were driving home where a tractor trailer spun off a piece of its rubber tire shooting it straight back under my van and ripping out the underside putting holes in our exhaust and causing the undercarriage of the van to come apart.  Quite honestly, after that incident I was just thankful we were ok and didn't flip the van! But as things settled down I began to realize that this was not what we needed right now with everything else going on.  Needless to say, it has been quite stressful in many ways, but as usual, we go with the flow.  Weeks like this when the stress level is particularly high, the little things that I would typically ignore or be able to let roll off my back don't always do that.  Weeks like this things get to me more...but it's also weeks like this that always somehow give me a glimmer of good as well.

Running several errands in a row is stressful enough when dealing with an extremely limited budget, but with the stress of the car incident, and 5 kids in tow while constantly explaining why we are sticking to the planned shopping list becomes a constant battle (albeit, a good lesson for them).  The kids luckily are very used to going places with me, so for them they usually roll right along.  But of course, this never precludes the comments we get when we are out.  I have addressed this issue in the past, and for some reason, this one particular day last week, it must have been "comment day" and I didn't know it.  Everywhere we went, every store we went in to, every person we passed by .... comments flew my direction.  Most of them were the ones we always hear ("Woh you have a lot of kids.... awww, you have all girls? I'm so sorry..... will you and your husband be trying for a boy? That's sad you don't have a boy..... Are all these yours?!.... Woh, you have your hands full....etc..") but it is interesting how things have changed now that Meagan is out and about with us in her wheelchair.  Days like this, we have started to get comments about that as well.  They range from (what I hope is) blissful ignorance ... "Wow, they really have neat strollers these days.. so many gadgets!"... to, what I despise most... the horrible sad face on someone when they see her followed by the pity filled "Oh, I'm so sorry" and everything in between.  It's been quite an interesting experience hearing these things, but one day last week I was particularly annoyed.

It had been our normal day of errands.  We had literally endured so many comments that day that when someone actually gave us attitude (an obvious eye roll) because it took my 5 kids and me a little longer to cross the street (since there was no ramp for Meagan's wheelchair and I had to slowly bump her down the curb) I was about at my wits end.  Even Reilly looked at me after that one and said "Well mom, there's another one! What's that now, about 100?" Ha... I hate that she notices these things, but at the same time, I love it because her sarcasm comes through in a hilarious way.  

We made our way to the car and I noticed a woman was just getting in to her car next to us.  I stood at the back of our vehicle and motioned for her to go ahead because she was ready and we still had to pile in with the kids, bags and wheelchair.  She waved me on, telling me to go ahead and load them up.  "That was nice," I thought to myself.  I scooted the kids in to the car as fast as I could and removed Meagan from her wheelchair, strapping her quickly in to her carseat.  I just put the bags in to the main part of the car and secured the side doors to make my way around to the back to dismantle and load up the wheelchair. 

As I took the seat off of the base to put into the car, I noticed the woman finally had looked up again from her drivers seat.  She realized everyone was in my car and it was just me at the back now, so after she gave a few glances around, I saw her place her car in reverse and start to back up.  I realized again at that time she had been sitting there for several minutes.  Even though we had moved "quickly" it still wasn't "quick" and she was still waiting to leave.  I started to put the wheelchair in to the back of the car when the woman was just about fully backed out of her parking space.  I noticed out of the corner of my eye her car had stopped moving backwards for no obvious reason, so I lifted my head to look why she hadn't driven off just yet.

The woman rolled down her window. She smiled at me and said "I just wanted to tell you that you are doing a great job."  I looked at her, obviously taken aback and said "Thank you!"  She continued... "I'm sure you hear a lot, and probably not much of it is worth listening to, so I wanted to tell you that I admire you and you're doing a great job with those kids.  I just know it. I hope you have a wonderful day."  I thanked the lady again, we exchanged smiles, and she drove off.  

When I got into the car, suddenly all my worries went away.  I stopped worrying we wouldn't get our chores finished, I stopped worrying about our finances, I stopped worrying about Meagan's upcoming hospital stay, and best of all, for the rest of that day, I completely forgot about the other comments we had received that day - for the rest of the day, that lady and her sweet compliment stuck with me.  What a nice gift her words had been and I cherished that for the rest of the afternoon.  

Fast forward to a few days ago.  Mostly everything was ready for Meagan's hospital stay - but we were out of a few essentials (think, toilet paper..etc..) of course.  So one quick run to the store was needed.  I piled the kids in the car and off we went.  Of course their stress levels were also starting to rise because they knew that in a few days Meagan and I wouldn't be home with them every day, and they worry because they don't always fully grasp what is going on.  We arrived at the store, got the few items I came for, and made our way to the line with only a few "mom can we get that?" aversions with my usual (and true) statement "no, we don't have money for that."  

We jumped in to the line where it looked like the woman was almost finished checking out. After a few minutes I realized it was taking longer than it should have and so I started paying more attention to the cashier.  What I saw next really needed no explanation.  It was apparent that the woman did not have the money for her food.  The cashier was very kindly trying to explain the difference, and it was apparent there was a language barrier between her and the woman customer.  Once the woman understood, I saw her going through her grocery bags and pulling out a loaf of bread, bananas, and other items.  She would set them on the counter, the cashier would re-ring her bill, and when it still wasn't enough the woman would continue to remove items.  The cashier was being very nice and trying to work with the woman but I could immediately sense the stress level of the woman rising.  The woman went from not understanding, to blushingly removing items from her bags, to now frazzled and obviously overcome by the situation.  The people in line behind us were growing impatient and the cashier now could sense the pressure.  She looked up at me and said "I'm so sorry ma'am, this shouldn't take much longer."

Watching this unfold in front of me, my heart and head were having an internal battle.  My heart wanted to pay for the woman's groceries... my head wanted to retreat knowing we barely could pay for our own.  But it was in that moment that I just kind of "did" before I "thought."  I told the cashier I would buy the woman's groceries.  The cashier nodded and proceeded to put the woman's goods back into her bags.  The woman started to unpack some saying "no, no..." not realizing it was ok.  The cashier looked at her and said "It's ok."  The woman still not understanding and now on the verge of tears said "no, no.." and started to put her bags back again.  The cashier then pointed at me and said "no, it's ok."  The woman looked back at me, and started to cry.  I could see her looking at my kids, one by one, (who were probably being incredibly silly by this point), and then she came over to me and said "no."  I just took her hand and said "It's ok" and smiled at her.  I gave the cashier the money for her grocery bill and the woman began to cry.  She muttered something which by her outward gestures to me I assume was "thank you" and I helped her load her bags into her cart.  I simply gave her the biggest smile I could and told her "God bless" and she turned and walked towards the door.  The cashier looked up and smiled at me, and I noticed then tears in her eyes as well.  

At that moment, Anna, my ever loving and sweet, albeit really loud middle child spoke up and said "but mom... you said we couldn't get a treat because we had no money for that ... so how did we buy her groceries?"  I just looked at Anna and said "Well Anna, sometimes you don't but you just do it anyway."  Anna is also my child that needs extremely clear explanations so in response to my short answer, I heard in her bellowing tone (for all to hear of course) "Huh? I don't understand... I thought we didn't have money. How did we pay for that?"  At this point, I was actually smiling. Anna's big loud smoky voice and her constant asking of the same question were making me giggle on the inside. Ohhh Anna.  I just looked at her and kindly told her I would explain when we got to the car.  God always knows how to throw in a little humor in a poignant situation. 

As we walked to the car, I couldn't help but think of one of my favorite people (Mother Teresa) and her famous saying of:

"Do not wait for leaders. Do it alone. Person to person."

I thought of the kind lady who had taken a few, well, several minutes of her time to just show me patience, and then on top of that give me a sweet compliment. She did it alone.  She took time to build me up, person to person, and changed my day.  I then thought of the people waiting in line impatiently while the woman in front of us struggled. I did it alone. I kept it going and showed the woman love, person to person.  I thought of how one small action, such as these two events, changed an entire day,possibly more,  and now it was now all coming together. 

 Amid the stress and the worry and the crazy week we had, God was showing me bits of hope.  He was showing me how great our fellow humans can be.  He was showing me humility and pride all in one package.  He was teaching me about the good in people and how we need to pass that on to others.  Most importantly, God showed me how we don't get to choose when we pass on that good - we cannot do it only when it is most comfortable for us, but even in difficult times.  When we do good for others through struggle, the meaning of giving is so much more - the gift is more genuine and the sacrifice is more real.  

We can do so much when we just lend a helping hand, show a bit of emotional solidarity, or take one moment to lighten someone else's load.  We never realize how much we can touch someone or make them see a little more hope in life through a small action.  We don't have to go around buying people's groceries - but, if the opportunity presents itself, say yes. Even if you really "can't."  We don't have to compliment mothers who are out and about, but it's a tough job - take a minute to do so. Even if you don't know what to say.  I guarantee these small gestures of kindness will go far beyond what can be imagined!  

Meagan goes into surgery around mid-morning today.  I know these next 1-2 weeks will be difficult.  I feel like this has been a long time coming, though, and am anxious to get it started.  So much of these next weeks are out of my hands - I cannot predict surgery, I cannot predict what we will find and I cannot predict if this process will finally produce a solution to all of Meagan's ups and downs and especially her latest struggles.  But, I just have to see the good in it all, trust in her excellent doctors, and hope for the best. As we check in with Meagan today I will just do what I can -  smile at her.  I will smile brightly and try to be a leader..person to person...and let her know it will be ok.  A smile is the best way I can help her today... the only way I can. Many times, it is simply a smile that gives us all the courage to step up and be a leader, to see humanity for what it is, and to pass it on, person to person.  After all, as Mother Teresa also said, "We shall never know all the good a simple smile can do."  

 

Music to my ears

While we wait for Meagan's shunt surgery, we have been moving right along with her therapies and daily life of course.  As I mentioned before we have been really working with her on weight bearing.  We want her legs to get stronger and now that we have her AFOs, we are able to work on that with a lot more success.  Without her AFOs, Meagan's legs are basically like a wet noodle - she cannot bear weight on her feet and her legs are very weak and wobbly.  With her AFOs, her lower leg gets total support and structure, so we can work with her on the sensation of standing and also get some pressure through her feet.... which is important so her feet grow as well. (She's still in an infant 2/3!).  She cracks me up when we work on standing, however, because of her expressions.  Sometimes she is not too happy or feels off balance because she isn't using her arms to help hold herself up - and I can understand that must feel very strange! One of her favorite things to do when I'm holding her in a standing position is to just lean her head over and rest it on whatever is closest - whether it be the couch, ottoman, chair, or just hanging it in the air.  Drama queen already I tell you!

Such drama - even with my arms wrapped around her waist 

for support...and this is what she does. 

Another area we are really encouraging is music.  As a musician/music teacher/performer myself, of course I absolutely believe in the importance of music for children from a very young age as a supplement to their learning and a vital part of their development.  However, in Meagan's case in particular, I see music as absolutely essential to her growth.  We have always sung to Meagan from infancy - when we weren't sure if she could hear, we would sing... and see her tilt her head and be interested.  When we weren't sure of her vision, we would sing to her....and see her eyes begin to track the toy or item we had been holding.  When we weren't sure of her speech, we would sing to her or play music for her - and she would suddenly be babbling and yelling right along with it.  From early on, I could tell that somehow music was speaking to her - in ways that typical speech and other developmental tools weren't reaching her.  Somehow her brain was connecting to music and producing skills that according to her scans, should be absolutely impossible to obtain.

She often wiggles her way towards me when I practice and lays there.

These active engagements in music have been very helpful in her development - most especially in her speech and expression.  If you remember this time last year, she was trying to make sounds, but we really had no speech as she approached 2.  I could tell in her eyes she was trying to communicate - and we had noise from her, but no "language" (as we know it) was emerging.  As she grew I would sing her name "Meagan Theresa" in a little sing songy phrase.  I remember one day when her usual babbling didn't occur - but instead I heard her mimic the exact melody I sang using her name.  So I sang her name to her, and she would repeat back the melody.  Before I knew it, a few months later, when I would sing her name, I would hear back, in the same sing songy melody "Megn Teeeesa."  It was then I started to really latch on to the idea of purposefully putting music in to Meagan's daily struggle with speech.

I started to sing everything to her.  What we were doing.  Where we were going.  Words. ABCs. Silly phrases.  Even things like "yes" and "no" and "go bed."  Everything was to a melody and last Fall we saw her speech start to emerge.  Several of her doctors were amazed, as the speech part of her brain was quite damaged - but one of them said to me... "this is going to sound crazy... but I think she is accessing speech through the music center of her brain."  I just smiled.  It didn't sound crazy to me at all!

Meagan playing piano her way...sans arms

So this whole year Meagan has been immersed in music whenever we can.  She is constantly sitting around when I am teaching flute lessons, or practicing for a symphony concert.  Likewise she hears her sisters practice their violin or flute and soaks in everything. She seems to enjoy the violin more than flute (seriously!?? How is that possible!? :) ).... but I think it has to do with pitch.  I think the pitch of the violin is much more comfortable for her head (sorry Megs).  Whenever Reilly practices, we typically see this:

Not totally offended though - she at least mimics playing the flute! :)

Meagan also enjoys Irish music immensely! We ask her if she wants to go see Irish dance and her little body gets extremely stiff with her arms flapping and her legs just absolutely filled with excitement they could burst and she gets a huge smile typically whispering "off you go! off you go!"  She is absolutely inundated with music from every angle and it has helped her so much.

How Meagan Irish dances

I am very thankful that we have found a "love" of Meagan's.  We ask our other kids all the time about their favorite things, or activities, or colors.... but then sometimes that can get overlooked for Meagan because she won't show us in the typical way what she likes.  You can ask her what her favorite color is and she may look at you, or say something random, or smile, or stare, or blurt out a color at random if she caught you saying the word 'color.'  Her attentiveness and ability to process is up and down and this is where we have found music extremely helpful.  Personally I really attribute music to her success in speech this year.  I happened to notice the window that worked for her - to look into her brain and reach her where we hadn't been able to before, and for that I'm very thankful.  It is these little victories with kids like Meagan that make the biggest smiles happen.  My goal for her is first and foremost happiness - and I'm glad I have found music helps contribute to making her happy because she certainly deserves it.  And that's music to my ears.

Meagan's rendition of "Do You Wanna Build A Snowman?"

Back on Track

As you know Meagan has been having balance and arm issues among other things that have developed over the last few months.  In the last few weeks, we have also seen strange episodes creep in where she seems extremely off, is very off balance, and acts like she is having a headache or head pain.  She will typically be very fussy and ask me to just go to bed.  Typically of course I pick her up and comfort her, but this time I grabbed my camera.  I just felt in my heart Dr. R needed to see exactly what I was talking about especially since these were now new things on top of her previous issues.  In an effort to clarify what exactly I was dealing with, I sent him this video.

How Meagan behaves during these new episodes

Upon receiving my email, I got an immediate callback from Dr. R.  He was very sympathetic and hated seeing Meagan is having days like this.  He decided then and there we do need to do more, and sooner than later.  He asked me to come down to the office so he could first turn up her shunt all the way.  It may seem crazy when Meagan seems under pressure, however, she has slit ventricles.  This is what makes SVS hard to navigate.  We don't want to put her under pressure for more discomfort, but at the same time, increasing the fluid is the only way we have to try and blow up those ventricles a little more so they stop sticking to the catheter or each other, which in turn, causes her symptoms.  

We drove down to the office where Dr. R waited for us.  I had all 5 girls with me so they came along.  Dr. R walked us into his office and we sat down and had quite a heart to heart.  We talked extensively about Meagan's episodes, her symptoms we have been trying to figure out, and also what we can do at this point to help her.  Granted, she isn't always like the above video - we still have good days and she still has a lot of smiles! However, to see her have episodes like the one in the video is heartbreaking - and it is NOT her norm.  We had nothing like this between last October and this February, so it needs to stop. 

Dr. R dialed Meagan's shunt to the highest setting to see if we can start blowing up the ventricles in a non invasive way.  He was very good with my other girls - he let one hold the magnet and let the other demonstrate to Meagan how it worked.  This is the first time Dr. R has talked to Meagan about what he was going to do ahead of time - I really liked that.  He asked Anna to stand up and volunteer to be his model - he used her head and showed Meagan what the magnet would do and that it wouldn't hurt at all.  Of course Meagan didn't like someone touching her head, but, she was a lot better about it once Dr. R had explained it to her.  She cried a lot less and seemed to have a little bit of understanding since he had just demonstrated on Anna what would be done.  

Once he dialed her up, he scheduled her soon for an EVD.  Basically, he will externalize Meagan's shunt so we can see if her ventricles grow at all.  By doing this he can tell a few things.  He can tell if her ventricles are able to be expanded, or if they are already rigid. He can watch her increase in pressure very gradually so we can see how her tolerance is and what a good balance will be for her personally.  And lastly it will allow him to see, once we reach that "sweet spot," which shunt or valve may work best for Meagan now to hopefully give her more consistent relief. He said he also may go ahead and take out her whole catheter and replace it to rule out any problems from the distal end of the shunt as well.  Her catheter area through her chest and neck has been puffing strangely lately anyway, so I'm happy about the replacement.   It is a long process - at least a week hospital stay, sometimes two... and going to be tough with the other kids and not many people to help out....but I think it will be so worth it to finally narrow down what will work best for Meagan.  I'm counting the days until this surgery and shunt re-placement because I am hopeful it will offer her a much longer term consistency.  

 So many days where she bulges and gets watery eyes

The final part of the plan, if the EVD and new shunt placement doesn't seem to do the trick is to in fact fully decompress Meagan's Chiari malformation.  It is quite a dangerous surgery (which is why she only had the partial decompression last year), so it is the last step of Dr. R's plan, and rightfully so.  But if it does come to that, I completely trust him surgically and will look forward to the relief it may provide to Meagan. We are still in conversation with our second opinion NSG because I think it is still wise to hear what a fresh opinion is on Meagan's situation.  But I'm glad we have a plan moving forward with our NSG here.  I look forward to hearing the conclusions of the second opinion and seeing how that fits in with the plan of action on this end. 

To finish up the Neuro side of things, Meagan had a follow up with Dr. F (neurologist).  He did a repeat EEG for some new seizures we have been seeing creep up in Meagan just to get a new reading before starting her on new meds for the new type of seizure.  Meagan was a champ during the EEG this time.  Typically I would have to hold her down to get the electrodes on.  Even though they don't hurt, she never liked them being attached.  This time, she still cried the whole time, but she laid still on her own.  A big milestone for her as far as being aware of what was happening and realizing it was ok to be upset, but not fighting it.  Such a champ.  (As was big sister Maura who has to come to all these things and sit quietly.  She did a great job behaving and being a big helper).

Laying so still for the tech

Maura rocking the big sister duty

Meagan seems to be handling her new setting "ok" as far as not having any dramatic constant screaming or soft spot hardening - but I also have not seen much change in her behaviors (as far as, change for the better).  She is still acting the same as before she was dialed up - some good times, but  balance and arm issues still present. What we have seen with the new setting are periods of fussiness/irritability that are inconsolable for a few hours, or times when she has a lot of head bulging and seems tired, but as long as these changes stay ittermittent, we still stick with it ....it's the price we pay to try this setting out and see if she can adjust.   If this can help open those vents even a tiny bit before the EVD, then we are on to a good start.  We will watch her and play it by ear.  If she really seems uncomfortable, I can take her in this week or next week and have her dialed back down until we go in for her shunt surgery.  

Being a tough cookie on her new setting

The last few months have been such an up and down roller coaster on many levels.  Meagan's setbacks, the back and forth with testing, and the emotional ups and downs of our relationship with Dr. R.  The last roller coaster has probably been the hardest because it's the first time our relationship with Meagan's NSG has really been "tested."  That said, I am glad where it has landed us - back on track, with a plan and hopefully a good outcome in sight.  I have known the root of her issues in my gut since February - and am glad Dr. R now sees it and is on board.  I don't think he was ever "not interested"... but sometimes we have to remember these doctors, even the good ones we hold on a pedestal by how well they deal with our kids, are regular people too.  Sometimes the doctors have things going on we don't know about and it takes a little perseverance and pressure to come to a mutual conclusion and plan for our kids. Not that distractions should cloud Meagan's treatment - but we do have to take a step back and recognize the vulnerabilities of simply being human.   After all, caring for Meagan is a group effort between Brian, me, and her medical providers.  If one  falters, the other needs to pick up the slack and keep the focus on track.  It may sound silly but the relationships special needs parents have with their good doctors is kind of like a marriage.  When one link is weak, the other links have to keep it together and make sure the child's best interest is at heart.  Sometimes this slack does fall on us, the parents.  It is harder when this happens because we don't have the "MD" after our name, and so have to almost provide more burden of proof.....but we have an equally important duty to keep pushing through until the MD's see what we see and should never be shy to speak up and insist our gut feeling is correct.  

Meagan chillin in her chair... her way.

So now we wait for Meagan's admission - I am really hopeful this EVD will offer new insight into what Meagan needs on the inside so we can continue to see her progress on the outside.  Waiting is the hard part now but I feel we are back on track as far as being really ahead of the game on Meagan's care.  In the meantime, we will savor her good days, give lots of hugs and kisses on her bad days, and trust in God he has led us in the right plan for her to continue to thrive. He gives us the strength to push through the doubt and believe in those "mama bear" moments I know will results in better outcomes for Megs.  Afterall, it is God above us or any doctors that truly knows Meagan's full plan - and I'm confident He won't let us down.

Meagan relaxing with her best fur buddy