Hospital Update #3 - Home

As you probably guessed Meagan did not come home Saturday night.  She ended up having two huge vomiting episodes and was quite out of sorts most of the afternoon.  She was tired and restless and of course, not holding her feeds.  In between being sick, she was happy though which was an improvement from the day before.  She would snuggle or smile at me and be silly.  There was a definite pattern of sickness and pressure and not feeling well, vs. having an empty tummy and being happy.  We hoped it was just still adjustment time so we decided to consult the docs as to what to try next.  They suggested resting her stomach, and then trying again at an even slower rate with some anti-nausea meds already in her system.  Meagan's feeds started slow and steady last night.  She was still having incidents of holding her eyes and forehead as if having a headache.  We had decided before starting the feed to go ahead and give her Tylenol for pain and also ordred the Zofran to help her hold the feeds down.  It worked for her first feed - we did it at an extremely slow rate and then let her stomach rest for a few hours.  When we started her second feed early the next morning, we weren't so lucky.  Meagan ended up getting very sick and was then lethargic and sleepy.  She dozed off again around 5am.

Dr. R came in fairly early.  Meagan was still sleeping. He was very disappointed to hear about her getting sick. Again.  We had another consult with GI.  They were very clear that this was definitely a secondary problem - and while they could offer solutions for her vomiting, it would definitely be a "band aid."  I was open to listening to what they had to offer because I was starting to get concerned about her weight gain and nutrition, and also the damage to her system from throwing up.  The GI doctor talked to me about replacing her Gtube with a GJtube.  You can read more about it here, but the short form is, the food goes through the J tube and empties into the intestines directly, bypassing the stomach.  It helps with vomiting, and also helps kids to absorb more of the nutrients since they aren't getting sick.  While the effects of the J tube seemed attractive, we also knew that by doing that we would have to change her to slow feeds - putting her on the tube about 19 hours a day for the calories she needed to intake. Also, if it became dislodged, it would mean a trip into the hospital to have radiology re-place the catheter into the intestines... comparatively, if her Gtube comes out by accident, I can simply (most of the time) put it back in at home.  After discussing it with Brian, I was not very sold on the idea.  We have no problem with her being tube fed...of course that's her main source of nutrition.  The issue for us was more about her lifestyle change it would mean.  As it used to be, Meagan would get tube fed by bolus feeds through her tube, and sometimes pump feeds, and sometimes she would take a bottle.  This had worked fine for her for over  1 1/2 years, so I was hesitant to add on something else to her plate (J tube) unless it was absolutely necessary.  But I knew if it came down to it, we would do what was best for Megs to keep getting her proper calories and the help she needed to grow and thrive. So by the time GI doctor left, we had a plan to go home, but call back Tuesday to get Meagan in for the Jtube outpatient procedure either that same day or Wednesday. Through the afternoon I grew in my discomfort of calling for the outpatient procedure.  I knew the root problem was we were in a tug of war between brain pressure and GI pressure - and in the grand scheme of things, brain will win every time just since it is more important in Meagan's case.... so GI will have to have "temporary fixes" at times, but I wasn't sure we were at the point where it was warranted.   We decided to not rush into any decision and consult with Dr. R since he also knows Meagan well, and go from there.

Tired and "grey" from a sick few days

We consulted with Dr. R yesterday afternoon after Meagan had again thrown up part of her feed during the day.  He said he was completely fine to let us go home and manage her feeds at home since we were competent parents who were on top of Meagan's issues.... as long as we were ok with it as well.  He also offered another opinion on the GJ tube option.  Dr. R suggested we go home, try light feeds (pedialyte and diluted formula working back up to full formula) as we saw fit on slow rates through her G tube.  Let Meagan try to adjust to her new shunt pressure and try to work her feeds back up to what had been her norm.  If for some reason this wasn't going to work, we would know in a week or two, and then it would be obvious (and an easy choice) to go ahead and switch Megs to the GJtube.  Dr. R also said he feels Meagan may need to go even one setting higher in her pressure setting, so he is having us come in on Thursday to get that done.  That way it will give Meagan some adjustment time now, and then when he pumps it up again Thursday, she will hopefully be settled out from this past week.  The conversation with him reminded both of us that it did take a little over a week for Megs to get used to her new pressure with the EVD... and that was when it was pumped up a little bit each day.  This new change had been overnight (literally), so the conclusion was, Megs may need more time to adjust.

Once we got home, Meagan was very excited to see her sisters and her pets.  She scooted around a little and played with some toys.  She snuggled with everyone and seemed content.  And her sense of humor has started to return.  I think we are definitely seeing her on the upswing.  She had a small feed last night on a very slow rate of mostly pedialyte and some diluted formula, and so far she is holding it ok.  She did hold it all night, however I did let her stomach rest the remainder of the night instead of doing a continuous feed.  We did another feed this morning, and so far, she is also holding that down.  If she continues to hold these smaller slower diluted feeds, we will try more and more formula until we work back up to her usual rate, and hopefully back up to the amount of formula she is prescribed to keep growing. If at some point it is apparent that won't happen, I have a final date in mind when we will simply say "ok, time for the GJ."

Overall it's been a pretty tiring last 5 days! I'm so thankful we have a great medical team to work with.. and I say that in the truest sense.  They really do work with us.  Meagan's doctors ask us her tendencies, evaluate her based on her clinical condition and the information we have told them, and are always considerate of our questions and opinions. We have never been pushed aside even when things are intermittent, and that is so important as often hydro kids do have intermittent issues that point to a bigger problem. So now we wait.

We are in the strange balancing act of brain pressure vs. GI pressure and something has to even out - or something has to give.  Considering it's taken us almost 3 years for us to even get close to a workable pressure for Meagan's brain, we want to mess with that as little as possible.  As a matter of fact, Dr. R said that because of her issues, he may even wait to close up her skull until she's 6ish instead of next year. It's her only "window" to let us know how the shunt valves are working, and the only way she gets a little pressure relief if things act up.  I was fine with that - I just jokingly told Dr. R he better not retire before that because I don't trust her in the OR with anyone else!

I will be sure to update from Neurosurgery once we go on Thursday.  I'm hopeful we will keep seeing Meagan improve with the diluted feeds, and she starts tolerating more and more in her gtube.  We hope that the "fine tuning" Dr. R and the GI team did this weekend was enough to get her another great few months.....or longer... with no major issues.  We are so grateful for her progress but it is also such a delicate balance between her shunt system and her GI system that little obstacles along the way are not a shock.  We just need to be sure we tackle them with the focus on what is best for Meagan long term.

Ironically, today also starts the first day of Hydrocephalus Awareness Month.  Be on the look out for a few posts that focus on this issue in the near future. Thanks again to everyone for the prayers.  And to Meagan's doctors and nurses who took such good care of her these last 5 days.

Meagan screamed all the way out the door - typically when Brian comes it means we are walking her to surgery.  Once the doors opened, she started laughing so hard.  She knew she was going home! 

Hospital Update #2

Meagan's MRI went well yesterday.  She handled the sedation well and while she took a little longer than usual to wake up, she did wake up fine.  The first thing she said when she woke up is "Go to bed!!"  She has started to say this referring to her hospital bed.  She knows when she is in her hospital bed, she is basically resting.  She knows when she leaves her bed, it's for some sort of test.  Smart kid.

When we got back to our room last night following the MRI, there was a technical problem in the room, so we were informed we had to move next door.  Meagan was an absolute mess.  By. the time we had walked up she was in complete meltdown mode.  As we moved rooms she became inconsolable.  The bad day she had, the MRI, the sedation and just feeling "blah" all culminated in an epic meltdown.  We were very lucky to have a tech and Nurse who know Meagan really well so once the new room got settled, they advised everyone else to just exit and let Meagan be with me alone to calm down.  (Love nurses like that!) Even doing that it took me a good 20-30 minutes to calm her down.  She was flailing, arching her back, and almost throwing herself off the bed.  After a big bear hug by mommy to keep her safe, and lots and lots of talking and trying to redirect, she did start to calm and soon she was snuggling in my arms.

The first floor nurses are so amazing with Meagan.  Many of them know her well, but even the new trainees seem to be following in the pattern of being good with her.  They even took Olaf's blood pressure (zero!) and temperature (freezing!) to help Meagan be more calm when getting her vitals done.

We decided to go ahead and try another feed at a slow rate to get her some food and see if she could handle it overnight.  The first part of the night was a bit crazy.  She was calmer as far as screaming, etc... but she was extremely restless.  She seemed like she just couldn't get comfortable.  She held her eyes a lot, not crying, but just wincing and squeezing her forehead like she had a headache.  Luckily later on, daddy stopped by which always helps.  Meagan is SUCH a daddy's girl.  Even if she's feeling badly, when daddy comes in, she lights up and just wants to snuggle him.  He stayed and snuggled for a few hours.  It was helpful to have him here to give her some love and also sit with her while I went out front to meet my mom and the girls.  They had driven down to bring me some fresh clothes and so I could have a quick visit with the older girls.  I'm so thankful my mom rearranged things at work to drive down from DC a few days ago so we didn't have to rely (and pay for) babysitters.  It helps to keep things so much calmer at home.  My mommy heart strings were tugged at, though,  last night for sure when I saw the older girls.  I reached in the car to give each one a hug and when I got to Reilly, she just buried her hands in her face and cried.  I reached in and grabbed her and just put my arms around her and told her I loved her and missed her.  Being the oldest is hard sometimes (I know, I'm an oldest child too) because so much is expected from you.  As the oldest typically you are "wiser beyond your years" in many ways... but in those tough instances when you are supposed to be that way, you just want to be little and have hugs and kisses and support from mom.  I knew Reilly was feeling this yesterday.  I comforted her, but then she was such a big girl and said she knows I needed support, not another "baby" as we already had Meagan to be concerned about.  She's a little toughie.  So much to balance and process for a 9 year old - but I am so so proud of her.  I told her she can have hugs whenever she needs to and to be strong and help Nanny (my mom) with the other girls and all the special things I normally do at home.  She dried her eyes and was ok when they left.

Brian left as it got later in the night so he could get home to be with the older girls and help.  Meagan continued to be restless through much of the night, tossing and turning, and finally around 1am she did fall asleep.  I was glad because as selfish as I think it sounds, I was exhausted too! We both snuggled and slept until about 4am.  Meagan woke up and was upset and restless again, and then again, she fell back asleep until about 7am.  At that time, the resident NSG came in and talked things over with me and said Dr. R would be by shortly.   When Dr. R came by, we talked about Meagan's MRI.  For the most part, her MRI was stable.  There are a few changes here and there, but nothing he wants to rush in to surgery for considering everything she just went through in June.  Moreso, the surgery most likely needed (Chiari again) is quite dangerous at her size and we want to buy as much time as possible before that becomes necessary.  Of course we don't want her hurting, but, to be honest, if we have to deal with a bit of fussiness and some bumps in the road, and  if we can help manage that with her new shunt system to at least provide temporary relief, I'm all for that to help her get even bigger and stronger before a surgery like that happens. Of course we don't want her feeling badly but if we can improve it through managing her pressures, I'm on board with that.  If over time she becomes so bad she is miserable daily, or we see a big dip in major skills or basic functions, or an increase in seizures, of course we will revisit that conversation.  Dr. R then turned Meagan's programmable valve up pretty high and said the plan for today is to wait and watch.  If she can handle her feeds and her mood improves, he is willing to possibly let her go home tonight.  He said she has to have improved behavior though and be able to sit up for a prolonged time and be happy/play like her usual self.

Meanwhile, we saw GI - they concluded that Meagan definitely does not have any GI issue as a "primary problem".. .in other words, no "thing" we are missing that needs to be diagnosed or treated.  GI's conclusion is that all her GI issues are always a symptom of neuro problems or her issues with pressure changes.  They did decide to keep her on the Nexium (she has been getting it through IV here) at home just to protect her esophagus if she gets sick when she has pressure issues again, but that's the only change they are making.  As of now she is on slow feeds - only about 50-60 an hour to help her absorb more nutrition. (Originally she was on bottles, boluses, and the occasional pump feed at home).  GI recommended continuing this until she is really settled in to the new pressure setting Dr. R set so her neuro issues can really settle out and then if she's doing better over the next few weeks, gradually increase her feed rate as we feel necessary.  He said it may be that she will always struggle with GI complications when having brain pressure issues just since she is so extremely sensitive, but that they will work together with us and NSG to make sure she is handled the best way possible for her GI health.  I was very happy with the conversation and am thankful she has such good GI doctors who really vet the situation before slapping on new diagnoses or medications unnecessarily.

So today we will see how she does at this new setting and hope for improvement as the day goes on.  I'm hopeful as she seemed to tolerate her slow feed overnight and we have seen no more seizures since Wednesday. She still won't take her bottles which is odd because it's really been her main comfort for almost three years, so I'm hoping as we get more settled we will see her want the bottle again.  Fingers crossed! Again thanks for all the thoughts and prayers.  Meagan is very lucky to have such special family and friends.  We will keep you posted if she can head home later tonight!

Meagan had a very special visitor yesterday...Olaf!

 The perfect gift from Ms. Lori, who has been by Meagan's side since birth... 

Olaf  even took a second to grab a selfie with Megs :)

Hospital Update

As I mentioned before, Meagan was recently hospitalized.  Starting this last weekend she wasn't holding her feeds down very well.  Along with that we saw increased irritability, and her grabbing her head a lot as if in pain.  We also noticed she was a bit off balance.  We waited a few days before going to the doctor on the chance it was just an off day or a viral bug, but she continued to get worse.  By Tuesday she didn't want to do anything except lay down on our carpet.  She asked for her bottles but wouldn't drink them and she wasn't handling the tube feeds well still.  I had emailed Dr. R the previous night explaining what we were seeing and they said if not better by Tuesday to go to the ER... so off we went.

Meagan was dehydrated and still not holding feeds and in obvious discomfort when we got to the ER.  It was clear after we saw the ER doctor and the Neurosurgeon on call that she was being admitted.  If for anything, to observe, but considering she just had her new shunt system put in a few months ago, her behavior warranted them keeping her to check things out.

Meagan was fairly miserable and started having issues breathing efficiently at night.  She was getting oxygen ok, but her actual respiratory rate would fall to exttremely low numbers, prompting me to jostle her a little in bed, after which she would take a bigger breath and then stabilize her rate.  We also still had her holding her head in pain and she still wasn't tolerating feeds.  Wednesday morning, Meagan slept.  She slept and slept and would barely wake up.  Dr. R didn't like it so he came down and adjusted her shunt.  He then continued to pump it vigorously by hand, after which Meagan seemed to come around a bit more.  We decided to try continuous feeds on the feeding pump to see if that helped with the vomiting. The GI doctor also ordered her some Nexium to protect her throat from scarring when throwing up, and Dr. R wanted to watch her at the new setting to see if we saw any improvement. He gave her a big hug and kiss before he left for the day and told her to behave.

 As the day went on, Meagan continued to have the same behaviors.  She even ended up throwing up her continuous feed, so at that point GI talked about putting in a Jtube to bypass her stomach and put her food directly into her intestines.  I was not opposed to that if that's what it took to get her nutrition, but, I was not ok with doing that without vetting every possible Neuro cause of what is going on since that has been her pattern in the past. Meagan also had a few seizure clusters - but a new type.  She had three clusters of what are called drop (or atonic) seizures.  You can read more about them here, but basically it is when there is a sudden loss of muscle tone, most often noticed in the head as it will suddenly drop like dead weight forward, and then recover, and then repeat.  Meagan did this about 5-8 times in an obvious pattern in each of her clusters. Each cluster was about 30 seconds long and the nurses thought with the repeated clusters it was time to let Dr. R know.   Dr. R went ahead and called Dr. F (Meagan's Neurologist).  Rather than go through more doctor visits, and considering she already has the epileptic history, he decided to just push up her Trileptal dosage to hopefully curb the new breakthrough seizures.

This morning I talked to GI and Dr. R and Blair about my thoughts and they all agreed that we should try a few more things neurologically first before changing Meagan's GI habits.  The GI doctor said she felt the GI symptoms were basically just that - a symptom of something else going on.  Today Meagan still is holding her head and eyes as if in pain, and she also refuses to sit up, or if she does for a second, she flops over or arches really far back.  Dr. R said that based on that information alone, he may need to mess with her new valve some more to find a good spot for Megs that is at an even higher setting.

In a little bit we are off to MRI just to double check her other brain issues and Chiari..etc... to make sure all that anatomy is stable and that we aren't missing something.  If all that is stable then Dr. R will come and dial up Meagan's shunt even more and then we will wait and see if symptoms subside and feeds get back on track.  That's where we stand at this point.  We are so lucky to have such a great group of specialists looking out for Megs.  They truly care about her well being, and are such good listeners whether it be listening to the parents or the nurses...which is such a critical piece in getting Megs the best care possible.

We will update more tomorrow once we know the MRI results and what the plan is!

Meagan relaxing with pain meds and fluids....as you can see she is not a fan of the gown. Oh well - whatever works!  The child life person on the Neuro floor remembered Meagan absolutely LOVES Frozen, so she found a copy and has let her watch it over and over in her room.  It keeps her very content while we wait for tests and results! 

We Will Be Right Here

***Disclaimer: I started to write this post before Meagan was hospitalized.  We aren't really sure what is going on yet but as soon as we have anything definitive I will post an update.  For now, I wanted to complete this post about her school evaluation and plans for the year.***


Meagan had her hearing test and county school evaluations this week. She did fine at her hearing test - she was a little nervous to go in to the booth without me, but once I took her in there and got her settled with the audiologist and some toys, I was able to sneak out and Megs did just fine on her own.  She responded to everything she was asked to do and the audiologist said she passed well enough to have no restrictions at school.  The audiologist said they would retest Meagan's right ear before Kindergarten because it was getting more negative feedback than normal and they want to make sure that doesn't get worse.

Meagan hamming it up at her hearing test...

The next day Meagan had her school evaluation. We arrived at the testing school and met the team.  The PT, OT, SLP, Feeding Therapist and Nurse were all very nice and were immediately met with a big "hi!!" from Meagan. As soon as I put her on the ground she scooted right over and started playing.  The different therapists started their evaluations while the Nurse and I went to another room to go over Meagan's whole case from birth until now.  Once we were finished going through her complex history, we walked back to the testing room.  Before we even got there, I could hear several doors down the hallway absolute belly laughter coming from the room.... from the therapists! When we walked in, one of them turned to me and said "Oh my...she is hilarious!"  I just smiled and said "Oh, I know!"  Once the eval was finished, we got all the paperwork necessary to move forward and schedule her IEP meeting in early September.  Once we got home, I called the Special Needs Preschool teacher to leave a message with my information and to hopefully set up a class observation time.

A few mornings later, I had sent the older 3 girls off to school and it was just Maura, Meagan and me at home getting things done and making sure Maura was ready for school too.  I sat Meagan on my bed while I folded some nearby laundry and Maura hopped right up with her.  As you know, Meagan has a lot of sensory issues - a big one being her head.  She hates hats, headbands, and even her hair being brushed.  She absolutely screams if I ever have to put it in a ponytail or even try to put a sun hat on her.  So it amazed me when I saw Meagan allow Maura to mess with her head a little bit.  What was even more amazing, was when Meagan started to become irritated with it, Maura just adapted.  In the video you can hear her saying, "Meagan, I'm not brushing your hair! I'm just rubbing your head!"  It thought it was the most clever thing.  There she was, a 4 year old, trying to word something differently so Meagan would let her keep doing something that she really has a hard time tolerating.  I watched for a bit and then started to record it.  I just love the care that Maura has for her baby sister.

As the week went on, we were discussing Meagan's school options.  We got a call saying that actually they were going to change her from her home school to a different school - I'm sure the SN program there is great as well, but, it's in the wrong direction for me to drive and handle the older girls' schedule, and it's not our neighborhood school where I know a lot of families.  There was a lot of internal struggle as I went over the back and forth of if Meagan should even go to school this year, or if we should wait.  She's my "baby" and also thrives so much from being home with me and working with me.  She also has no lack of social interaction as her sisters are constant "mini therapists" for her every day, just as I had witnessed with Maura that week.  Yet, I could still see some of the benefits of her attending the SN preschool to get some of her services like OT or feeding therapies.  Many pros and cons went back and forth in my head until one night later in the week.  

That particular night, we were hanging out in the kitchen. We had the Frozen soundtrack on and were listening to Meagan's favorite songs over and over again while we made dinner, did work, etc... Each of the girls took turns singing with Meagan, helping her "dance," and sitting with her. I was watching the girls and enjoying them playing together really letting the music just pass me by.  I mean, how many times have I heard the Frozen soundtrack....? Probably one too many times.  However, I started to listen at one point and the lyrics caught my attention. It went:

"......'cuz for the first time in forever, I finally understand.  For the first time in forever, we can fix this hand in hand.  We can head down this mountain together. You don't have to live in fear. 'Cuz for the first time in forever, I will be right here........"

I realized at that moment if we decided to keep Meagan home this year, she would be ok. School will be so wonderful for her, and we are very excited about it,  but there is no rush if we aren't ready as a family, especially when the program we were hoping for didn't have a slot for her.  We weren't impressed with her secondary placement - so there's no need to jump in where I know I won't be comfortable.  If something changes in the future, and our local school has an opening,  then we can re-evaluate.  She has everything she needs where she is - her in home therapists (who are staying with her even after her third birthday - yay!), her parents, her pets, and best of all, her sisters.  Right now, she absolutely thrives on close relationships, and she already has that built in with her home team, family and therapists alike.  When she does go, the one thing that will never change would be her sisters' love for her. Their understanding of Meagan and who she is has grown exponentially this year, and it is truly inspiring to watch them invent their own ways of working with her or helping to understand things she is afraid of. Their special way of teaching her and caring for her that no school could ever offer her, and if we can give her that for another year, we will.  It amazes me the way the older girls can bring things out of her that no one else can.  Most importantly, the gift they give Meagan daily of never feeling alone is invaluable.  Meagan's favorite song is right - hand in hand, they are going to do this together.  We will be right here.

Time and a Place

I was debating whether to write about this but after thinking about it, I feel it's important.  It's not a complaint, so to preface, don't read it that way.  It's more of an observation and as a mom, I want to teach my children about their presence when out in public, and about respect.....so here it goes.

First, what happened:
I was having lunch with a fellow special needs mom.  I had all 5 kids with me, and she had her child with her who also has Hydro.  We were enjoying a nice time catching up and bouncing things off of one another having to do with our SN children.  My older four kids were sitting there talking and eating nicely.  They were being quiet and respectful and having a great time.  We happened to be sitting next to the front tables so Meagan's wheelchair could fit and still leave plenty of room for the servers. People walked in and out, as in any restaurant, and the lunch continued smoothly.  At one point, two young women came in.  The server greeted them and nicely led them to a table near us to seat them.  Before even going near the table, one of the young ladies turned her body away from the server, faced my friend and me, looked us directly in the eyes, and said in a loud and purposeful tone full of attitude, "Ugh, I don't sit near children (think of the most snotty disdainful tone you have ever heard)..... We need another table!!!!" With that she glared at us with an unfriendly stare, flipped her hair back towards the server and stormed behind the server to a different table across the room.  Both my friend and I were taken aback by this young woman's brash nature, and even the waitstaff around her was suddenly fidgety and extremely uncomfortable.  One of the waitresses even came by our table and said "don't worry about it" while another staff member apologized for the young woman's behavior.

Second, the response:
My friend and I were utterly speechless.  For those who know me, I'm rarely speechless. :) And that is usually a good thing.  I'm a strong independent woman and mother, and this has helped me through numerous uncomfortable, or inappropriate situations.  But I was speechless.  As everyone knows, having the 5 children including Meagan we have had our share of "comments"...but even those I can dismiss as "ignorant" or just a lack of exposure to larger families, and if persistent, I have responses at the ready.  This young woman, however, was just trying to be mean.... and the effort put forth was shocking to us.

Third, the plan of action:
I have heard people mention numerous times that I am a "mama bear."  I take this as a compliment, because, frankly, I think any mother is absolutely a mama bear to some extent.  It is just instinct.. We are here ultimately to protect our children, so it is a natural occurrence that comes to the forefront when needed.  As we finished our lunch yesterday, we contemplated how we could have reacted to that young woman.  Perhaps a comment we should have thought of faster. Or maybe approaching their table and saying something. I even jokingly contemplated parking my children outside at the window where her new table sat, but we of course realized as funny as these ideas were, none would be productive or effective.
 We were still in shock at how rude the girl was and at a loss as to why she would go through such a public effort.  As my friend and I left the restaurant, we said our goodbyes and went to our respective cars. Just when I had closed my door to start the car, I happened to turn and look at the car next to me.  There were the two young women.  As soon as they saw me, they pulled down their sunglasses and gave me a purposeful 5 second disgusted look, and then proceeded to back out of the parking space at lightning speed (to make a point I suppose - glad all my kids were safely in the car!)

Of course inside I was quite angry about the whole thing from the restaurant comment to their continued attitude upon noticing me in the car.  And then Reilly asked me "Mom, why was that woman so mean? It made me sad."  That's when I took a step back and realized that she was right.  As shocking and rude as the young woman had been, and as much as it had insulted my friend and me, and our children, it was worse than all of that.  It was sad!

Fourth: Thoughts
I have no clue if we will ever cross paths with that young woman again, but, I'm sure I will never forget her.  If my 9 year old can pick up on the sadness, then the young woman must know it as well, even if not continuously.  And that's not a way to live.  As Mother Teresa said, "Let no one ever come to you without leaving better and happier.  Be the living expression of God's kindness: kindness in your face, kindness in your eyes, kindness in your smile."  As much as I really wanted to give that woman a piece of my mind, I realize now why God may have helped restrain that urge. That woman's sad view of children and of the world would not have been helped by anything I had to say - someone that blatant and that resistant to joy would not be moved by much.  It would have to be an internal transformation, and that is something I cannot influence verbally.  But by our actions, by the children behaving and smiling and having a great time, by my friend and I keeping silent in the end and just continuing our lunch, and by our prayers for the young woman maybe, just maybe, she will have a change of heart.

I do not know her, or what she may have experienced.  Perhaps there is a valid reason for her disdain towards children and her need to outwardly express that.  I just hope that I raise my girls better than that.  People are entitled to their opinions, and yes, I even mean opinions to not wish to sit around children or perhaps opinions that somehow kids are noisy and annoying.  That's ok.  Not everyone is a "kid person" and it's just part of humanity that we all have our limitations.  However, I do hope that in the future, the young woman is at least changed enough to know her presence and simply have respect for her other human beings in public places.  My parents always said "there's a time and a place"...and this was a prime example.  I really don't mind what the reason is she didn't want to sit near us - but there was no respectable reason to tell us that, and make such an effort to turn to us and proudly announce her dislike of children.  She could have easily asked for a table across the room, without proclaiming her reason why, and then proceeded to talk with her friend at their new table about how she doesn't like to be around kids.  Obviously there is something there that bothers her so much, she felt the need to publicly make it known and act disrespectful above all.

Fast forward to last night. The girls and I were sitting and cleaning up from some groceries.  There were some brown paper bags that we were collecting from our grocery boxes to put into the trash.  Reilly started to rip up the bags to make them easier to fit into the trash can.  As soon as she did this, Meagan just absolutely lost it and started laughing.  We thought it was hilarious, so I grabbed my camera and Reilly did it again - and Meagan laughed hysterically! Over and over.  It was so silly, but it brought so much joy seeing her laugh and laugh and laugh, we started to giggle as well.  I couldn't help but think of the young woman we had encountered that day and Reilly's comments to me.  She was right.  It was sad.

 As I listened to Meagan's infectious laugh I couldn't help but think all Meagan has been through.  And here she was, laughing hysterically....at ripping paper.  I realized she had something that woman didn't - pure joy.  There's a time and a place for us to vent, profess our dislikes or annoyances to our friends, of course.  But there is always a time and a place for joy and respect - and at the end of the day, I'm at least glad my girls realize that.  I hope, somehow, that young woman finds it too.

The Love of Dance

So Meagan being the youngest means she gets to go everywhere her big sisters go.  Often times, this means she is tagging along to something having to do with Irish Dance.  Being that Irish Dance is the girls' main activity and sport, there isn't a month that goes by where they don't have some sort of show, competition, or classes.  There are a lot of benefits to Meagan being in this environment. Most important are the relationships she has formed with several of the dancers and their parents.  In essence, during class times (which are several times a week), Meagan becomes sort of "part of the dance family" and bounces from parent to parent snuggling, exploring and playing.  The parents don't mind at all and jump right in loving on Meagan and often times being surrogate therapists helping encourage her to crawl around or holding her up to stand or "walk" around the studio waiting room with them. Even the teachers jump in taking time to give Megs a high five, a fist bump, or talk to her about her feet and encourage her to "dance" in her own way. We are very lucky that there are such good families at the dance school - it truly is like a second family.

Meagan's vocabulary has grown from being around the dancing.  She learns lots of rhythm words, and lots of descriptive words when the girls talk about kicking higher, or going faster.  She has even learned new words like "pretty" or "sparkle" and lots of her colors from all the gorgeous costumes and hair pieces the girls wear to compete.  It is so sweet to watch her with the dancers being so gentle and examining every part of the dress taking in all the beautiful colors and textures of each costume.

Feeling the different textures of Kaitlin's costume

A more "practical" skill we have noticed lately has suddenly taken off and in large part, I am realizing it has to do with the dance classes.  In most classes, the girls are counted off by saying "1, 2, 3, 4, 5, 6, 7, off you go!"  Meagan started trying to repeat this a few months ago by saying in her own way "fiiiii (5), siiiiii (6), sevnnnn (7), off you go!"  It was the first time we have really heard her start to "count" or even say numbers or repeat them in order.  As the months have gone by and Meagan has sat through countless classes, competitions and shows, Meagan picked up more and more numbers and would say them more clearly each time.

One day while driving in the car, we hear from the back seat "Daddy, count!"  Meagan then proceeded to start at 1 and would say every other number with Brian filling in the gaps.  She almost made it to 16 before pausing and going back to 1.  We were astounded.  We didn't know that she had soaked this up so I asked her to do it again.  And she did! Below is the video from that day:

Ok then... I guess we love to count!

As of late, with the gait trainer being a 'no go' dancing has actually become a motivation for Meagan.  If you ask her if she wants to get up, she usually says no.  If you ask her if she wants to work on walking she often says "no! no walk!"  But lately, if you ask her if she wants to dance, she will say her usual "5, 6, 7, off you go!" and then scoot forward so I can pick her up and help her stand up to "dance."  This is how we are now getting her to weight bear a little on her feet and encourage her to stand....by asking her to dance.  It's quite hilarious.. and quite the work out! 

Irish dancing with Pop Pop

I remember as we started to realize Meagan's physical limitations and struggles... and at the same time watching the older girls take off in Irish dance... and I often wondered to myself "would Meagan ever be able to do that?"  I often wondered how we would incorporate Meagan in her sisters' activities when she did things in such different ways... how would we help Meagan find things that she loved too?  Seeing Meagan now, and the motivation she has drawn from Irish dance, have answered those questions.  She may not dance exactly like her sisters, but when at shows or competitions, seeing her clapping to the rhythm, or smiling at the music and costumes, or seeing the absolute joy pouring out of her facial expressions as her sisters practice show me that she, too, loves dance.  Practically, exposure to dance has allowed her to progress in skills like counting and colors due to being around the Irish dance environment and the wonderful school families and teachers who have taken Meagan right under their wing without batting an eyelash.  And most importantly, Meagan has found new motivation to do the things that are hard...like working on standing or walking... the things she really doesn't want to do but has to do.  Resistance has turned in to willingness.... if we frame it as if we are asking her to dance.

 It warms my heart to see Meagan love something her sisters also love doing.  The girls' love of Irish dance has not grown to be a barrier as I feared, or leave Meagan as a bystander, but has rather been a mechanism to allow bonding between sisters, education and acceptance among the dance family, and unintentionally has become an art Meagan loves enough to lead her to a progression of skills that would have otherwise not existed. Famed American dancer choreographer Martha Graham said, "Dance is the song of the body. Either of joy or pain. It is the hidden language of the soul." Meagan may mostly dance in her heart, but the skills and motivation she is gaining from it in her own way are astounding. The inclusion she feels is uplifting. And the joy it brings to her soul...... well, that is priceless.  

Completely wiped after a few hours of watching and clapping at a competition

Knee Pads

Meagan's gait trainer was returned last week. Between Mrs. M, Brian, and myself, we decided it was best as we were seeing no improvement and continued misery, which in the big picture, was not ok with any of us.  When Meagan's PT then told us she had another child who could use the trainer and had tested well on one already with no fighting, we decided with all the factors we had already been contemplating, it was best to return it to the PT and let the child who would actually benefit from it have a shot.

As people found this out, we got a lot of "oh no!" or "aw, that's too bad"..etc especially following our last post of hopefulness that the gait trainer would work out.  None of the comments were malicious in any way...they were all very well meaning.  But they were definitely comments of projected disappointment.  I think when things like this happen, sometimes people not in our shoes don't understand that a setback can really occur at any time, and be permanent, or be temporary.  Sure... we were hoping that Meagan could get over being strapped in the trainer and realize she could finally move with her feet..independently! But it was just not meant to be at this time.  We are still working with Meagan on weight bearing by holding her and letting her stand by the couch, or tap her feet on the floor.  While she doesn't get as much of a "workout" this way as she would being fully on her own weight in the trainer, it is at least getting her upright time to time and she is at least having fun with it.

This occurrence, plus some conversations with fellow special needs moms this last week about some setbacks they have also been having with their children really brought to light how much of a rocky journey this road really is.  Speaking personally about brain issues, it's all part of it.  The brain is an amazing thing, but also an unpredictable thing.  So sometimes it works wonders of progression, and sometimes we have a bump in the road that was either not foreseen, or that comes out of nowhere. Sometimes, it seems there a lack of awareness of the actual process by which brain kids accomplish new things.  And that's understandable.. I know before Meagan, I was not as aware as I am now (although I was admittedly more aware than most typical parents, as I had been around my mom's school students long enough to realize some parts of the special needs journey).
Having 4 older 'typical' children, I can completely understand this mindset.  Thinking back to my other daughters' development, although they each developed at their own pace and quite differently, there was at least a general theme that held true.  Once they started to accomplish something, that was it - accomplishments kept coming. Better, faster, and on to new things.  As soon as my oldest mastered supported sitting, she was sitting on her own within days.  As soon as my second born could pull up on the couch, walking was not too far behind.  As soon as ...... and you get the trend.  This is common for most parents.  The child will hint at a milestone, dabble in it, accomplish it, and then master it.  I think this is why it's hard to grasp how a special needs child just simply doesn't move forward on to the next logical step.. or even harder to grasp is when a child is on the path to accomplishment but simply just stops doing what they already knew how for no apparent reason.

Having a special needs child is certainly a long road. Heck, being a parent at all is tough! I knew this when I "signed up" for this journey and would often visualize a never ending road as a way to prepare myself. I would think of it when we would drive across flatter lands like Texas or Central Ohio and I would look down the high way....how it almost seemed to touch the sky and the end of the road was not visible to the eye at all.  While this image has held true to a point, I realize now after many experiences of the unexpected setbacks it has been a false picture.  Instead, now I think of it as the hiking path on the mountain near our home.  A lot of climbing. No end in sight. And a lot of rocks and roots along the way that cause us to stumble, trip, and even fall at times.  But like on any good hike, we finally make it to a "scenic view" stop where you can see for miles.  Beautiful trees, scenery, and best of all, a breath of fresh air and a pause in the trail. For a little while, we can rest. And just take it all in.

To my other special needs moms out there who are struggling at the moment or facing a setback, hang in there.  The hike isn't easy, and it's especially hard when things happen without explanation.  We have to do so much that is "out of the ordinary" and be such "mama bears" all the time, that when things come out of the blue, it throws us off even more.  It sucks - there is just no other way to say it.  But know that there are lots of us on the hike with you.  When you are struggling or hit a rut in the trail, we are right there.  The falls hurt, but that's just part of it all, so keep on going.  Because there is absolutely no better advocate for your child than you.  And although the rocks hurt, those scenic views are so worth it.  You and I both know that's why we keep allowing ourselves to fall...because throwing on some knee pads and continuing on the trail is the only way we can reach that next beautiful stop to let our kids shine... and reach the potential they deserve.

  

One Step

I'm sure we have all been there.  I know I have.  That moment when I just want to stop.  It's just "too hard."  Giving up seems so much easier in those moments.  It may be something as "silly" as a tough work out or a hard math test.... or things more grave like fighting an illness or dealing with a serious family situation.  Silly or serious, we are all human... and those moments of weakness are oh so trying, and a true test of our resilience.
We have now had Meagan's gait trainer three weeks.  She still screams and cries every time we put her in it, but she still tries.  She's doing really well since surgery, but gait trainer time is definitely her worst part of the day - she absolutely hates it. We were worried that all she would do is scream and get nothing out of this with therapy, but in the last few days we have seen a transition.  Still tears? Yes.  Still upset? Yes.  But her focus has shifted.  Instead of asking to get out, now she says "See Mommy," or "huggy Mommy".... and works through her crying and whining to put her feet forward one more time.  Just one more inch to reach that goal.  A few more tries. She still goes. And you can bet when she reaches me, she gets the biggest hug ever.  It is in those moments that I realize she's not giving up. It's not even on her radar.  She struggles and it's hard.  It is tough.....but she has proven tougher,  and she pushes through.
I'm pretty sure I will feel like giving up again on something in my life, whether silly or serious.  But all I have to do is think of Megs and realize if she's not giving up, neither can I.  She amazes me all the time.  But most especially in those moments where I know it would just be easier for her to stop.  To say "that's enough."  And just give up.  But as famed author C.S Lewis said, "What saves a man is to take a step.  Then another step."
And so that is what Meagan does. One step at a time, I see success through her tears.  One step at a time I see a little strength in her weakness.  And one step at a time, I see giving up slipping further and further away....and perseverance shining through.

I'm so proud of you Meagan!

The Incredible Pink Hulk

Meagan's arm braces arrived a few weeks ago - but I decided we wouldn't get her fitted yet because she was just about to go in for her surgeries.  Now that we are finally post op, we were able to get to Meagan's Ortho and pick up her arm braces.

When we got there, Terry (our ortho guy) tried the braces on Maura first to help Meagan see they wouldn't hurt.  It helped a little but Meagan still cried when he put them on her.  She just does not like any sort of equipment! She did well though and got used to them quickly.  They are actually really cool - almost like arm reinforcements.  They aren't stiff like a traditional brace, but they couldn't be too loose either because it wouldn't help stabilize her elbow ligaments.  The braces are almost a perfect "in between" support for Meagan.  They are stiff enough to support those elbows and prevent any more hyper extension... but they are loose enough where she can still fully bend her elbows if she wants to for crawling, sitting, eating, or playing with toys.  The hinges inside are custom made and very cool! Of course Meagan chose pink, so they are very bright.  Her body is still so tiny that the first time she put them on, she reminded me of the Hulk.

Trying on Maura first 

Meagan's turn!

At first Megs didn't move as much with them - I think just getting used to something on her arms was a bit of a challenge for her.  But she didn't fuss that badly either.  She just did a lot of sitting and some scooching forward.  We enjoyed watching her explore Terry's office the day we picked them up.

Liking her new arms

Later she got much more mobile with them on.  It helps her avoid a lot of face-plants when trying to crawl and her scooching is much stronger.  With her "Hulk" braces on, she is so much stronger and can use her arms much more effectively.  I'm excited to see how this helps facilitate more crawling in the near future.  Either way, she sure is cute as the Incredible Pink Hulk.  Little tough girl!

Neurosurgery Update - Post Op Appointment

This Wednesday, Meagan was finally ready to get her staples out from her surgeries!  She was just about 3 weeks post op by then and we had an early morning appointment scheduled with Dr. Reisner.  I was fever free (thank goodness) and although not feeling 100% yet, got the all clear from my doctor since I was on the mend to take Megs to the appointment.  I did not want to take the other kids, however, as some were still recovering.  It was also a very early appointment so luckily our sitter was able to come so Meagan, Brian, and I headed off to Children's.

We arrived in the office and sat in the waiting room.  For the first time, Meagan did not cry.  She seemed almost comfortable recognizing where she was, looking around at the pictures and looking at the movie.  We were called back quickly and as soon as we pushed her wheelchair in to the hallway to go to the room, we saw the little nook where Blair and Dr. R sit during the day in between appointments.  Not a second later we hear from Meagan "Hiiii Blair!"  Blair looked up and was all smiles.  "Hi Meagan!" she said.  Meagan was kicking her legs in her chair, putting her head back, and grinning the biggest grin ever. Meagan would whisper "Elsa Blair" over and over as we walked in to the exam room. She was hilarious.

Blair followed us in to the room and brought her little kit with her.  She carefully removed all of Meagan's staples from her EVD site and also from her large shunt valve incision.  Meagan barely made a peep.  She didn't like me stabilizing her head for Blair to work, but she didn't cry or scream or fight. After the staples were removed, Blair just stayed and talked for a minute about how Megs was doing.  As she talked to us, instead of taking a seat, or standing in front of us,  she stayed there by Megs and just gently rubbed Meagan's hair.  Meagan's eyes began to almost close with each stroke, and when Blair would stop she would move her head for her to start again.  So Blair would continue, pushing her fingers through Meagan's hair so sweetly and rubbing her head in a caring way as she finished our conversation.  I loved that.

 A few minutes later, Dr. R came in.  He was just beaming when he saw Meagan.  Earlier I had forwarded him an email with the video of Meagan crawling. I asked him what he thought of that. He admittedly said he had come off a long day of surgeries and sat down to see the email in his inbox.  He was nervous and even asked Blair ahead of time if he should open it - he was so afraid Megs was in trouble or in pain again! My heart ached for his concern and I said "Oops! Next time we will label the emails 'Good News!' or 'Bad News' just for you!" He said he loved watching the video and he could not believe what a different child she was from just a month ago.  Not just the physical strength she was getting back and new progress she was making, but her overall look.  Healthier, happier, and more at peace.  I could not agree more.

We chatted a bit more about Meagan's surgeries, the shunt system he had put in, and how Meagan was doing over all. Dr. R was so happy to hear that Meagan was progressing again, regaining strength in her arms, and stabilizing.  Most of all he was glad to hear she was happy.. and pain free.  About this time, we heard a tiny voice say "Reisner...peek a boo!"  It was the first time I had ever heard her say his name without whispering.  We looked over and Meagan had picked up her blanket and was covering her eyes.  He looked at her and I said "I think she wants to play peek a boo." Dr. R  laughed and said "Where's Meagan?" She playfully pulled her blanket down and smiled.  Then again she put it over her eyes again and said "Reisner, peek a boo!"  I looked at Meagan and said while smiling  "Hey, that's Doctor Reisner to you miss!"  Dr. R humbly said "No, that's ok."

Yea, we have seen this before...but we love it.

After a few more episodes of peek a boo, Dr. R continued the neuro exam.  With each move, he carefully explained his reflex instruments to Meagan, and would check each arm, leg, and knee, even offering for her to help him.  No tears. No crying. No screaming.  He even was able to look and examine her incisions and open cranial vault without Meagan doing much more than blinking.  Once all was finished, we discussed briefly Meagan's open vault.  Dr. R will have to close that up when she is between about 4-5 years old.  It is a time we (and Dr. R as well) are not looking forward to mostly because that vault is such an open window in to what is going on in her head.  If she has temporary pressure from storms, or a slight clog, or any reason, that vault being open at least gives the pressure a chance to not cause her pain or symptoms since there is room to expand.  It also gives us clues about malfunction or things going wrong inside if it gets very tense or bulges.  It's an easily seen outside "cheat sheet" almost that will be missed.  Dr. R joked that maybe he would close it up the day before he retires.  I know what he meant - her having that vault closed will be scary.  I told him he'd better not! But we will cross that bridge when we get there.  In any case, it is something we will now have to watch that Megs is nearing 3 years old.  The time we can leave that area totally open is going to narrow greatly over these next 1-2 years so we will keep it on the radar and make a plan for surgery when appropriate.

Typically, Dr. R said going a full year until Meagan's next follow up would be ok, but Meagan being Meagan, he would prefer to do a shorter follow up.  However he said since she's doing so well, six months may be a bit soon, so why don't we split the difference and see him again in nine months.  We agreed and the appointment was over! On the way out every office staff said their goodbyes to Meagan and we headed home.

Once we were home, Meagan was right back to her mischievous self.  I felt badly she was missing out on a few playmates with Anna and Maura still recovering from strep and pneumonia (yes, it's been quite a few weeks in that department - don't ask! :) ), but she had fun with Reilly and Kaitlin just the same.  They played with cars, princesses, and Kaitlin even had Meagan "hiding" on the couch and ottoman when daddy came home telling her to say "shhhh!" before he walked in the door. It was very cute.

The best part of the whole day was realizing that Meagan had made it through an appointment without being upset.  Yes, she didn't like certain parts of it, but she never once screamed, cried, or showed fear.  She showed trust.  For the first time, she was showing complete and utter trust in her most important medical team, and telling them this through her behavior at her follow up.  I was so happy to witness this experience because it not only showed possibly some cognitive awareness of what was going on, but, more importantly, an emotional attachment to Dr. R and his team.  Somehow she just finally 'knows' they are there for her, will always help her, and love her. (Something Brian and I have known for a long time.)

I'm not sure what Megs will do not seeing Dr. R for 9 months! But we are very "happy" for the reasons behind that!  We had a great run from last October to this last February and I'm hopeful we can go a lot longer this time without another hospital stay or more setbacks developing.  We are so thankful again for the ingenuity of Dr. R and his team to step back, look at the big picture, and find the solution we have now that has allowed Meagan to blossom again.  And, of course, get in to trouble again too.  As an almost 3 year old should.......