Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Saturday, June 11, 2016

Dear Dr. K





Dear Dr. K,

Bear with me - it's been five years coming for me to write this letter.  Do you know how long that is? It's about 1, 826 days.  To be honest, you probably don't even remember me, or remember me well.  I know I'm not any more "special" than any other patients you see.  Day in and day out, you see high risk patients....mothers with problems, babies with problems, and for that in particular, I do feel for you.  The job must be demanding and stressful and tough.  I can even see why you might desensitize yourself to situations such as Meagan's and how that may help you cope with the news you have to give to families day in and day out.  But just because I can sympathize, or understand, or try to treat you with respect doesn't mean I agree with you or what happened in our first meeting 5 years ago.
 
Five years ago, I blissfully went in to my 19 week ultrasound to check anatomy on our 5th daughter.  As the scan concluded, and I saw the large black space where typically I had seen the brain of our other children, and although I was blissful, I was not blissfully unaware.  I knew something was wrong....very wrong....and off I went from my appointment with a pink piece of paper labeled "hydrocephalus" to come and see you for further testing.

After our initial scan, you confirmed that yes, indeed, our daughter did in fact have a severe case of hydrocephalus.  You told us that her brain (what was left of it) was under severe pressure.  You said that she probably would not have a good outcome and that if her hydro was caused genetically, she wouldn't even make it to birth.  What you did not know is that I had already googled, searched, and read all I could about hydrocephalus and while a lot of it was scary, it didn't change the fact that she was still my daughter and I loved her.
When you talked with us about the outcomes for Meagan, you listed all the things she would not be able to do.  You told us she would not walk, talk, smile, coo, move, or do many other things we would expect from our sweet girl.  What you did not know is that it didn't change the fact that she was my daughter and I loved her.
When you suggested we terminate (ie: end her life) due to these circumstances, you told us if we needed time to think (since we were up against the deadline to terminate in our state), we could even go to other states that had later term abortions.  You told us that it would be hard on us, our normal routines and our finances.  You told us that our older four children would suffer to have a sister with such needs.  What you did not know is that it didn't change the fact she was our daughter and I loved her.
When we fought with you over every scan, refusing the amniocentesis, telling us proper measurements of remaining brain tissue, and ultimately signing us off to have my own OB deliver her, you always made sure to tell us the negative.  The can'ts.  The won'ts.  And when we wouldn't listen to you, you sent us to your "genetic counselor"....who was only full of more can'ts, won'ts and nevers. She again asked us what we would do with a child "like Meagan" impacting her four older sisters lives.  What you didn't know is that none of that changed the fact that Meagan was our daughter and I loved her.

Well, here we are.  Five years later, and I would like to tell you about Meagan.  First, I will take your approach - clinical and labels.  Yes, she does have her hardships.  She has had 15 brain surgeries.  She has epilepsy.  She has feeding difficulties and GI troubles.  She has gross motor delays and fine motor delays and cognitive delays.  She has growth problems.  She gets hit harder by illness than her sisters.  She is, well, in a term you will probably understand, 'different.' 

Now let me really tell you about what she is like - meaning her soul, her personality, her being.  Meagan is a complete joy.  Everyone that meets her smiles, laughs, or takes away a sense of love and compassion.  Meagan moves.  She kicked her legs and moved her arms for over four years and then this last Christmas, she just started walking. Granted, she walks a bit like someone who has had a few too many - but we don't care.  She also does use a walker and a wheelchair - but again, we don't care. That's just Megs.   Meagan laughs. She is funny and has a sense of humor to rival the most famous comedians.   Meagan loves.  She loves her sisters, her family and her dog.  She loves her teachers and even those she doesn't know well. She will hug a complete stranger and ask anyone in passing "whats your name?"  Meagan eats. For the last 3 years Meagan was 99% tube fed through her feeding tube - but that's still eating! Recently, her oral eating has suddenly taken off and so now she eats two ways.  I bet you can't do that.  She can.  Meagan plays.  She plays with her sisters, plays with her friends, and plays on her own.  She really enjoys Peppa Pig and Sophia the First and Frozen.  Meagan sings.  She can sing any song on the radio she hears, even if only once.  She sings to her baby sister.  She sings to me.  She sings to anyone who will listen as I push her through the grocery store.  Meagan has an amazing memory.  Short term, notsomuch.  But long term - wow...don't say anything around her you don't want coming back to bite you! We always joke with her future teachers that they will have to give her tests 4-5 months after she learns something so she can recall the information.  It's ok - you can laugh.  We have a lot of laughter around here - it's important.

 I could go on, but, I think you get my point - you see, you were wrong.  Amazing, I know....but it seems you don't know it all.  I couldn't even tell you what my typical kids would do or not do when they were born so I was a little worried you seemed so sure - to embody some superpower that no other human I know has - the power to tell the future.  But luckily, I have come to know that no - you are just a regular person like the rest of us, and just as bad at predicting the future as anyone else.

Now for the blunt part - and I want you to read this very carefully because this is the most important paragraph I am going to write to you.  This is the most important thing I have been waiting to say to you, and will ever say to you regarding Meagan.  Even if Meagan did NONE of those things I listed above - you would still be wrong.  Because you see, my children aren't my children because of things they can do - they are simply my children because they are.  Notice the reason there at the end of that sentence? Right - there is NO reason or qualifier or checklist that makes my children mine....other than they just are.  Even if Meagan never did ANYTHING, even if God forbid something happened where she lost some of her progressions or development...... I would still love her, I would still be proud of her, and I would still be incredibly grateful, joyful and thankful that she was mine.  Because you see, what you don't know is that none of that changes the fact that she is our daughter and we love her. From the moment she was conceived, she was ours.......and she was a beautiful soul.  

I truly hope this letter finds you well.  I wish you long years of happiness and health and joy.  But please don't look for all of that in the wrong places.  Sometimes the greatest gifts we have in life come from the greatest challenges. It's ok to outline the challenges - I get it.  Liability.  Scared parents.  Your job on the line. And little interaction with the special needs community outside of your ultrasound machine.  But try to not forget you are actually that baby's doctor.... and your job is first to "do no harm."  Help parents to understand the problem - all outcomes across the spectrum.  Direct them to support groups, medical doctors who can further explain the condition, and help them to reach out to other parents who have children with the same situation so they can find strength.  Encourage them to come back to you and visit so you can see how amazing their child is - and so you can also stay balanced and truly see these children for who they are - beautiful souls with value - not a diagnosis out of a medical text book you haven't looked at in years. Remember, even our children born "perfectly typical" can quickly change in the blink of an eye. (Speaking of typical, our older four daughters are doing just fine.  They have a level of compassion and love you would rarely find in children of their ages.  And two of them want to go in to medicine because of Meagan.  We even added to our family and gave Meagan a baby sister who will grow with an equal amount of compassion and love... I call that a win win!)

One day, we do want to bring Meagan back to see you.  We want you to see her sweet hazel eyes, her rosy cheeks, her teeny tiny little legs, her pretty brown hair, and her contagious smile and sense of humor that will be sure to brighten your day.   I hope that then, you will finally know and feel what we have always known -  she is not a label or a list of can'ts.....but a little spitfire...a small piece of heaven God allowed us to have here on earth for however long that is.... she is just our daughter - and we love her.  Unconditionally.  Forever.

God bless,
Molly and family



Friday, May 20, 2016

Problem Solved

Before I get into details, I want to say that this blog post is being written from my living room - yep, my nice comfy home sweet home living room (yay!). We got home late last night and frankly, we all passed out before I could update anything so here we go.

Meagan's new blood work yesterday morning was ok...but not 'great.'  Her white counts and CRP fell again (which is good), but not by as much as Dr. Shore (infectious disease) would have liked.  In addition, her sed rate (another inflammation marker) jumped by 20 points.  Dr. Shore was glad things were creeping down, but with the other number jumping up, and Meagan STILL holding fever, he was not comfortable discharging her without more aggressive treatment plan.  A big goal is to not go back to the hospital.... as much as we love our specialists and nurses, we don't want to be there to see them .  (They know exactly what I mean when I say this), so when Dr. Shore explained his plan I was completely on board. We did not want to rebound at home and return with another infection or worse. 

Dr. Shore ordered IV steroids that Meagan would get through the day, and then he ordered a completely different antibiotic.  He said hitting her hard with the Vanc was protocol - you don't wait around to see if a brain patient's brain is infected - you treat it.  But he said now that her CSF was clear for the 72 hours,  his discovery of what was going on, and with her inflammation numbers and fever, he wanted to add a more targeted antibiotic in addition to the steroid.  He said typically if he hits it with this combination, especially at this point in the game, he sees fairly quick results or reactions from the body. Dr. Shore said he would recheck her in the evening, and if his suspicions were correct and she did respond quickly, we were on a promising path and he would talk going home to continue recovery.

Cara was over it too...and ready to get home!

The IV meds were started and so we waited.  The steroid of course made her crazy.  It was good to see energy, but, it was "false" energy.  She was a handful to watch on the steroids because of course she felt she could do things that she could not - she was just completely restless.  I held her a bit in my lap to try and contain it all, and then at one point she looked at me and said "put me in my bed."  So I did, and she fell right asleep.

Cara helping Megs through her meds...her IV was so sore.


As the day went on, she rested and her fever started to come down.  By early afternoon we were finally at 100.  It was a great sign.  After her last dose of antibiotic, she asked to sit in the "blue chair."  The blue chair is the chair that is in every room - Meagan knows this chair because typically, as she starts to feel better during stays, it's her next step to going home - to sit in the "blue chair."  Naturally, I agreed and put her in the blue chair.  She just chilled.  She looked outside and was talking about the clouds and trees she saw. It was nice to see her just be relaxed and enjoy all the activity going on outside her window.



Meanwhile, in the midst of all this, Dr. Reisner and Blaire came by to check on Megs.  She was due to have her stitches out anyway the previous day from her surgery, so they decided to just do it then.  One problem was that Meagan had major 'hospital head,' as we call it.  The whole back of her hair was literally a huge knotted ball.  Blaire asked us to wash it and try to comb it out so they could get to her stitches and then they would return to remove them.  When I looked at the back of Meagan's head, I knew no amount of conditioner was going to help it.  I asked the nurse to discreetly give me a pair of scissors because that was the only way we were reaching the stitches.  We bathed Meagan in her bed, and I put a ton of conditioner on her hair.  I then cut through the middle of the knot and started to comb.  I took each half of the knot, slowly worked the tangles out, and finally we had clean combed hair and an easy path to her stitches.  Blaire returned with Dr. Reisner later that day and removed the stitches.  Dr. Reisner also told me he had consulted with Dr. Shore and agreed with his conclusions and plan, so that made me feel better as well.  We said our goodbyes and I told them hopefully we don't see them for a year....and of course we sent Dr. Reisner off with a Hershey bar.  Can't break tradition.  (If you are unfamiliar with why Hershey bars are a "thing" between us, read HERE).

Later that afternoon, Dr. Shore came back to check on us and Meagan was smiling.  Although still very pale, she wasn't as "grey" as she had been, and he felt a lot more comfortable about our plan to go home.  He said he couldn't let her go without a heavy course of steroids and antibiotics to continue at home, and of course we were ok with that.  He also said that in Meagan's case, she harbored so much bacteria there that once she is all better, we need to consult with ENT and schedule to have Meagan's tonsils removed.  Dr. Shore said that there was no way to know for sure, but between the intubation for the surgery irritating her throat, and it being a perfect opportunity for germs to enter, she had a lot going on that all came together perfectly to create this whole mess this week.   I thanked him for all his help and excellent investigative work. I told him I liked that he was a problem solver.  He acknowledged that without his consult from Dr. Reisner, we could have been there for weeks more and still been searching for the cause.  Without the correct course of steroids and targeted medicines, it would have been a circus and probably a lot longer hospital stay....not to mention, a much sicker Meagan.  He gave me his information so we have access to him for future consults if Meagan is ever down again and it's not the shunt - especially if it happens out of town.  I was very thankful to have that - another phone number for peace of mind and another amazing specialist on Meagan's team.

Once we got home, Meagan was beyond excited to see her sisters and Bentley.  She did try to walk a little but it was virtually impossible.  She couldn't hold herself up at all and fell hard.  She wanted so badly to be with her sisters though, so for the rest of the time she was awake, she scooted around the floor.  She's also a problem solver.  I like that. The meds - I don't like them too much. :)  Of course I like they are making her better.  But Meagan on steroids is no fun.  She is hyper beyond belief one second, and in complete tears the next.  She is emotional and laughing and crying and nutty.  It's funny and tiring and annoying all in the same moment. I just keep telling myself it's helping her - and maybe she's helping prepare me for a houseful of 6 teenage daughters.  Ha.

Sometimes problems with Meagan are clear cut.  And often times they are not.  If you have followed the blog from her birth or before, you know that many times we have had to go with the 'non answer' answer.  So any time we actually get a firm answer on things, it is a breath of fresh air.  Even Meagan's nurses rejoiced when Dr. Shore got to the root of the problem.  They have been there through it all and have seen all too often Meagan and her doctors struggle with answers when things don't make sense.

We see Dr. Shore again next week and then will move on to ENT to schedule her surgery.  It stinks she needs another surgery, but comparatively, this one should be pretty "easy." And it helps solve another problem that could really affect Meagan negatively down the road if we don't do it.  So we are happy for preventative care as well - problems solved before they start are always ok by us!

Thanks to everyone for all the thoughts, prayers, meals, help, and kind words.  Weeks like this can be very hard on the family, namely the other girls, and every little token of kindness was felt and appreciated.

Thursday, May 19, 2016

To The Moon And Back

Meagan had a fairly uneventful night last night.  She crashed fairly early and slept well.  Her fever still hovered in the 103 range and she was still very tired.  Around 4am she woke up, and was just "up."  I think she had fallen asleep so early she just couldn't go back anymore with waking up so early.  I snuggled her for a bit and then labs came to draw blood.  The results came back promising - Meagan's CRP had fallen again - her white count had gone up a little, but with the falling CRP Dr. R was happy we could be headed in the right direction. 
Still, the fevers were puzzling so far into the process and both of us were worried we were missing something.  Dr. R decided to call in a colleague - an Infectious Disease doctor - to look Meagan over and make sure nothing else had manifested. 
The ID doctor was very nice - he talked with me about Meagan's history, the reasons she had been admitted this time, and what we had done so far.  He had a suspicion and asked if I could help him hold Meagan so he could get a good look.  She wasn't happy about it, but I knew it was for a good reason.  Upon his exam he found that way deep down, Meagan was harboring puss in her throat and that the insides looked pretty horrible. It was crazy because on Sunday, her throat was completely clear - but these things can be brewing and that's probably what was happening in her case.   He said that the infected throat could easily give Meagan the fevers and lethargy she had been experiencing - not to mention a few days before we came to the hospital she had lost her voice.  He also said her loss of appetite and fluctuating white counts make sense as her body tries to fight off the germs. 
Meagan also had been holding the back of her neck more frequently as if it's bothering her - this is the one symptom I'm unsure of - sure, it could have had to do with her throat and referred pain, but after reviewing some of Meagan's latest scans it could also have to do with her Chiari Malformation, especially considering her balance lately and not wanting to sit up as much.  Laying down for her is more comfortable and that's typically a red flag with Megs.  We will see with time - if the behavior stops, then we know it was acute.  If it doesn't, then we will have lots more questions for Dr. R about what this means for Meagan since she would be showing symptoms again.  But for now, we are focused on getting her better from this illness before looking in to what may be lurking again in her brain.
Overall Meagan also had a much better day.  The positives were she was talking, and interacting again with people.  Child Life brought her something to color and we helped her color a page or two.  She had a few of her teachers stop in to wish her well and bring her some love, and her favorite nurse was here again and able to bring some smiles out of Megs.  Probably one of the funniest things ever was when Nurse P was asking Meagan how she had been..  She asked Meagan about walking and her sisters and Bentley and said she looked like she had a very busy and fun year. Nurse P then asked "soooo, what have you been up to?"  Meagan thought for a moment and then said "well my cat is in heaven."  Ha. Really? After a whole year and a half that is the one thing she chose to tell Nurse P.  It gave us all a good laugh and a good hunch that hopefully our Megs was waking up on the inside and starting to win the fight.
As afternoon rolled around, Dr. R rounded again and we talked with the ID doctor.  The ID doctor was not comfortable letting Meagan go home today because she was still harboring high fever, and her labs while promising, hadn't exactly fallen as we had hoped.  Knowing about her infected throat, he also was wary of sending her home with fever in case an abscess was forming - something that if it happened, would bring us right back to CHOA in another serious situation.  So as a team, we decided to wait out her fevers tonight.  We agreed to continue to monitor her and do another round of labs in the morning.  If her blood counts were much much lower and her fevers subsided, we would assume we got it all with her four days of rotating medications and feel good talking about going home.  If her new labs are not lower, or her fevers persisted, then he said he would want to try to give her a boost with a targeted steroid to help her body finish off the infected throat.  At a very last resort, he said he could do a focused CT scan of Meagan's neck to for sure rule out any abscess, however, since she has already had countless CT's and x-rays, and since we haven't seen her new blood counts yet, the scan probably will not happen. 
As the evening went on, Meagan became very tired again.  I would be too with such a long week of fever and pain.  She went back to sleep fairly well tonight -  She was still uncomfortable but sleeping.  I got Cara ready for bed and cleaned up our room a little bit.  Then I went to say goodnight to Meagan - before I even touched her I could see her hair was sweaty.  Could this possibly be the start of her fever breaking? I sure do hope so. But I won't *really* say it out loud just in case....

I was really starting to worry about Meagan this week.  She just didn't look right and we didn't have *the* answer .... she looked grey and pale and wouldn't stir for so long.  I'm so glad that today we have seen her personality start to come through and hopefully we can get some color back in her tomorrow.  We should have labs drawn fairly early so we are hoping for a much more drastic drop in numbers to reassure us that we did in fact get everything and no bugs are lingering in her system.  As for the remainder of the throat, that will heal over time and hopefully she got enough antibiotics in her system to cover her fully and ward off any lingering infection.

Weeks like this can get very crazy for our household - we have school, dance, work, everyday chores, financial obligations, Bentley, and the list goes on.  It gets a little tough to "divde and conquer" with Brian to make sure all our bases are covered, but we just do.  I haven't seen my girls since Sunday morning (barring a quick visit to Reilly for her school awards on Monday morning), I haven't been home to keep Bentley in his routine, and I haven't been home to have down time with Brian and discuss our days, plans, and thoughts. Knowing all this, however - the time away, the expense, the hospital annoyances, the pain Meagan and all of us endure - would never change my choice to do it all over again.  When you say you love someone to the moon and back, you mean it - and that means that sometimes you have to feel like you actually travel to the moon and back to show that love.  This is just one of those journeys  and right now I feel like maybe we are almost on the home stretch from it all...this time..  Laying here with Meagan I am happy and peaceful.  It isn't a chore - it's a gift.  And I will cherish that gift to the moon and back.....and back again....and back again.....and......

Love you Meggy and we are hoping for some awesome numbers in the morning.  <3


Tuesday, May 17, 2016

Numbers

Meagan slept last night for a few good stretches.  She got a pre-op wipe down (just in case), and another dose of her heavy antibiotic.  Unfortunately, her IV also went bad - it never looked great from the ER anyway to be honest so I wasn't surprised.  Luckily, one of our favorite people to redo IV's was here.  Ms. C, as we will call her, was excellent as usual, and got another IV in Meagan's hand with minimal fuss and pain.  She was able to take the old one out and let her arm rest.  We saw glimpses of Meagan's stubborn self when she was getting her new IV - telling Ms. C she needed to put a band aid on it, she was getting a 'boo boo,' and then finally telling her and our nurse that they could go home.  Oy.  Needless to say, despite her being bossy, all of us were happy to hear it because that is more like the Meagan we know - so I thank them for taking Meagan's "insults" with grace and indulging in some humor about the whole thing.  Any glimpse of Meagan's personality is a good thing!

So first for the good news - her CSF cultures are still negative, and we are past the 24 hour mark.  Now I don't want to jinx anything by saying this, but, I would honestly be shocked if we saw any bacterial growth at this point.  Yes it can happen up to 48 and even 72 hours, but, I feel pretty comfortable saying that her CSF, thankfully, is not what is holding the bacteria.  That would have meant removing her entire shunt, waiting for infection to clear, and redoing the shunt.  So, I am VERY happy her CSF is still showing no growth.  The other good news is that although she's unhappy at times or has, um, 'attitude' (the nicest way to write it), we are happy to see that.  She has been really lethargic since Saturday, so to see that is a good thing.  She will stay awake for a little bit and watch Disney Junior, or will talk to me for a few seconds..etc.  She is still feverish and still wants to sleep a lot, but these awake times are a good thing.  AND the last good thing today - we got a smile out of Meagan.  It wasn't any grand effort - her nurse simply walked in and Meagan smiled.  We love love love her nurse today - well, we love a lot of nurses on first floor - but Nurse P was with us through almost all of Meagan's very difficult lengthy stays 2 and 3 years ago, so to see her walk in made Meagan smile.  I love that Meagan reacted this way - with everything going on, it's nice to see she actually has joy at who is coming to care for her.

Now for the "eh" news - I won't say bad because I do believe with Meagan's personality improvements we have to be moving in the right direction.  But, it's still "eh" mostly because of the unknown.  So if there is no bacteria in her CSF, the logical question is...where is it? Well the most honest answer is - who knows.  What we do know is that her white blood count and CRP were very high, she keeps rebounding with a high fever, and she's still (more than normal) sleepy/weak.  So there is obviously infection happening somewhere - as I said previously they have been hitting her hard with two antibiotics that really should cover us with any infectious situation. 

So the plan from here is - continue to watch Meagan's CSF (to ensure no new bacterial growth), look at Meagan's blood cultures as well (to also make sure no bacterial growth), and if those stay clean, hopefully her blood work from today shows her white counts and crp levels have dropped.  Although not an exact "you have *this* type of infection" answer, what that will tell us is that the meds ARE working and we keep on keeping on until she's back to baseline and infections are gone. 

That's basically where we are now.  Dr. R and Blaire said they could get Infectious Disease involved, but, until we see her numbers there is no point because it will just make it a lot more difficult (and probably painful) for Meagan.... so as long as her numbers come back trending the right way, we can chill with neurosurgery and keep killing off whatever is bugging our girl.

It's all about the numbers today! So let's hope we see them going the direction we want! We will keep everyone posted of course and hopefully have some of those answers for you tomorrow.  Thanks again for all the prayers and well wishes!


Monday, May 16, 2016

The Perfect Storm

Since Meagan's surgery 11 days ago, she has been doing well. She was back to her normal "go get em" self, and even gave herself a black eye trying to walk around her second day home. She went back to school last week (which she loves) and seemed to be doing well. In hindsight I should have known *something* was up because throughout the week she wasn't eating as she normally does. But, she had also been through her first surgery in a year and I attributed it to recovery. By the end of the week, Meagan's mood was turning slightly whiny, but again, i attributed it to recovery. Saturday was a crazy day - I taught dance lessons all morning, went home to shower and get my music and flute and then went on to my symphony rehearsal and performance. I didn't see Megs (or any of the kids) much that day, and Brian had mentioned that Meagan had been "eh." When he says that I know something is up because typically she's not just "eh," especially on a day with daddy.

Today we woke up like any other day. The girls had Irish dance workshops all day long and we had planned for us to split the driving duties so by the day's end, we were all together at dance and then would go to evening Mass together. Needless to say that did not happen. 

Meagan was rather lethargic all day. She was still talkative but didn't want to move from Brian's chair. Remember, this is the kid who wanted to walk so badly after surgery, that she did so, and gave herself a black eye for trying. So something wasn't right. As the day went on she just looked "grey."  That's the best way I can describe it. Then the heat. I could feel the heat a few inches away from her. I got the thermometer and Yep. 104 temp. 

Now you may say "kids get sick" etc. Well yea. They do. And even kids like Megs get "normal" kid stuff. But my mama gut red flags were just screaming at me. We were 10 days post op. And suddenly my kid was laying across the chair. Grey. Lethargic. And high temp. In these situations you are literally praying for some other symptom to show. A stuffy nose. Cough. Anything to be just a "normal" kid thing. But as the hours went on, I could tell she was not well. After discussing my concerns with the Pediatrician, we both decided Meagan needed to go in. 

We arrived at CHOA in the evening. Because of her symptoms they were very quick at getting us back to a room. The plan was to run a viral panel and blood work. One or the other was going to give us a direction. I was hoping for a virus. Again, one of those weird prayers you pray as a hydro parent when your kid is down. 

After a few hours we did get some results. Her blood work came back showing her white counts (infection markers) over 25,000. Her CRP (inflammation markers) was 9.5. Crap. Sorry but that's the first word that came to mind. Neurosurgery was paged. One of Dr. R's  colleagues came in and did a shunt tap. He couldn't pull much fluid from her shunt, but was able to get enough for a culture. The first cultures should be ready in the morning. If her CSF shows growth then unfortunately it means back to the OR to externalize Meagans shunt.  If the CSF doesn't show any growth, we treat her anyway and recheck the 24 hour cultures. Infection in spinal fluid is not anything you mess around with. Luckily Dr. R's colleague agreed and wasn't going to wait for cultures to start hitting hard with meds. Unfortunately Meagan reacts to the ideal medicine to treat such infections, but with close monitoring and allergy meds she made it through most of the dose. After that, they started her immediately on another medicine to help her body keep fighting the infection while we await the cultures. 

People have said its the perfect storm - the timing post op, the blood counts, the fever - for a raging infection to be showing itself. Unfortunately my gut feeling shares that sentiment. However, this isn't Meagan's first storm. So I have faith that with more answers tomorrow and continuing aggressive treatment by her doctors we will hopefully have caught this early and see her turn around. The funny thing about storms is that they do end and the sun always comes out. But in this case, I'm lucky to have light through the storm - and that's Meagan. She is sunshine to everyone that knows her and loves her and we can't wait to see her sweet self feeling better soon! 

We will keep everyone posted as we know updates. 

Sunday, March 6, 2016

Stepping Stones

Wow. It's amazig how fast life can go when you blink! I have been fairly good about keeping up the blog and now realize it has been a few months already! Lots has been going on in the Gareau family during those months. We have had ups and downs.  I will do a quick recap and get you up to speed with what has been going on, and especially what Meagan has been doing. She surprised a lot of us this winter and I can't wait for everyone to see her progress.

I came across an opportunity late Fall to bring another dog into the family.  Being that we really missed that "big dog" presence in the house, we wanted a dog sooner than later to be already used to our family by the time the new baby would walk, and the puppies were what we were looking for, we decided to go ahead and commit to taking one of them for our newest family member. We didn't tell the girls, but instead told them we were going to the small petting zoo farm we have visited before. When we got to the farm where we were picking up our new puppy, the kids were absolutely shocked. So much so their reaction was quiet and in disbelief! They thought Brian was just getting a puppy for them to pet so when we told them he was ours to bring home, they were elated. The girls chose to name him Bentley and so he has taken his place in our family quite well. He has big shoes to fill - Dudley was such an integral part of our life. But we have no doubt Bentley will make his own path in the family and be a joy to all of us, especially Meagan.



Prior to Christmas, Meagan's four older sisters competed in the Irish Dance Regionals (Oireachtas) again this year.  They did both team and solo dances and everyone did a wonderful job! Reilly placed 18th and qualified to compete at Nationals.  Kaitlin placed top 10! She also qualified to go to Nationals.  Anna danced her first solos and made it through with two clean performances.  And all three girls along with Maura competed in team competitions where they did a very good job and will also be going to Nationals for teams.  I'm so proud of them, especially since they had to go with Brian on their own since I was so close to my due date.  They traveled on a plane for the first time, had a total blast, danced really well, and enjoyed a wonderful weekend with Brian, my mom (who flew in to help), and all of our Irish dance friends.   

 

 


 

Christmas was great - although I was very very pregnant and had on again off again labor, we had a great time with our family.  Meagan enjoyed opening gifts.  For the first time she was aware at least of the excitement and the "buzz" going on around her and really got involved.  It was so fun to watch her discovering all the new excitements of the season and watch her taking it all in.  She gave us a little surprise as well over the break - for the first time, Meagan started taking independent steps.  One day, she just tried to make it between our couch and Brian's chair... and she was able to do a few steps and then throw herself into the side of the chair.  It was amazing! This trend continued over the break and into January and by mid January, Meagan was moving around our living room or her classroom independent of her walker.  She is really enjoying her newfound independence.  It presents a few new challenges now as she doesn't have great balance, so we are more concerned with falls on the front part of her head (where she is missing skull).  We also have to now deal with a more intangible challenge - her desire to walk even when she cannot or when she tires out.  We love to let her try and walk whenever she can, but, sometimes she tires out and falls a lot, or simply wears out and can't.  And other times there are too many people, changes in the ground where we are, or too many crowds for her to safely or successfully walk.  So we have had to find new ways to deal with her stubbornness .... we absolutely love the drive it's giving her, but at times it can be extremely difficult to help her understand when she does need to rest and use her wheelchair or let us help her. 



Unfortunately, we also had a sad occurrence over Christmas break.  Our beloved adopted cat, Francis, passed away suddenly.  He stopped eating one day and went downhill fast.  I took him to the vet where they tested him for several things.  His white count ended up over 90,000 and his marrow was barely making any more platelets.  It was awful.  I syringe fed him for a week to see if he would turn around, but, he unfortunately started to get fluid in his lungs and so we had to take him to be put to sleep.  He was so young to go and was such a wonderful "bridge" when we lost Dudley.  He helped us get through his loss and we were looking forward to many more years with Francis and Bentley.  But unfortunately, it wasn't meant to be.  It's so amazing how he came in to our lives and just seemed like the perfect fit.  Perhaps that was his purpose... to come to us, help us through Dudley's loss, and then be on his way.  Either way, he was a very much loved member of our family and we will greatly miss our one eared cat. 

 


In early January, things turned positive once more with the birth of our 6th daughter, Cara Maeve.  She came on her own, on her due date.  The whole day was wonderful.  Meagan wasn't too keen on her little sister at first - she doesn't' like toys that move, and in the beginning, Cara was just like a baby doll that moved so she wanted nothing to do with her! Over time, I started easing her in to being a big sister.  I would leave a diaper on the floor and ask Meagan to hand it to me, or ask her to come a little closer for a picture for Pop Pop, and eventually when Cara was a few weeks old, Meagan was fully in to the role of big sister. 
 
 

Cara has been a very happy laid back baby - I suppose she realizes she's #6, so she may as well take it easy and go with the flow.  It's been so fun to see Meagan in the role of big sister - she tells everyone "that's my little sister," and gives her hugs and kisses. We had her baptized at our alma mater when she was two weeks old - it was an incredibly special weekend to see her being baptized in the church where Brian and I first started going to Mass together as college students.  Just recently, Cara has started to smile and Meagan loves to touch her cheeks and watch her react with smiles and coos. 

 
 

The biggest "milestone" over the last several months has been celebrating a very special anniversary.  As of the third week in February, Meagan was able to officially celebrate a WHOLE YEAR with no surgeries, hospital stays, or emergencies.  I can't even believe I am saying that because being at children's hospital was basically part of our "normal."  That has changed a bit, and while we absolutely ADORE Meagan's doctors and the neuro floor nurses, we are happy to say that part of our "normal" has changed for the better.  It's amazing what can happen when she stops getting interrupted and is allowed to just be Meagan and learn and grow.  We know due to her diagnoses and complex shunt system this won't be a forever thing, but, we will take every day past a year we can get.  We are so happy Meagan has been afforded a year to just be Meagan. 

 

Finally, the newest development has been with Bentley and Meagan.  We had considered getting Meagan a service dog, but the schedule wasn't a good match with our family.  So we got Bentley on our own.  Someone asked me if we were going to just have him trained for Meagan.  I had no clue that existing pets could be trained, so I started to ask around.  I called the Children's Hospital Pet Therapy contact to ask if they knew of any local trainers that would work with and existing pet.  They were able to give me several referrals.  I talked to three of them, and finally we decided to have Bentley evaluated at Comprehensive Pet Therapy.  In order to move forward with service training, the owner said Bentley would have to pass a temperament evaluation.  This is because to even embark on the service training journey, the dog (no matter the breed) needs to meet certain personality and trainability requirements. 

I took Bentley to the training center on a Tuesday night.  We met with the head trainer/owner who did the evaluation.  It was very interesting to watch - he did many tasks with Bentley, a few of which were testing friendliness, how he reacted to different positions and temptations, and how he reacted to different intense stimulations (like loud noises or things thrown in his direction..etc.).  After two and a half hours of evaluation, we found out that Bentley passed! The trainer we were working with was a former neuroscience researcher, so when we designed the program for Bentley and Meagan, it was definitely one of those "meant to be" moments.  It was very easy to make goal behaviors for Bentley because the trainer understood many of the intangible needs Meagan has. 

 

All that said, service training is extremely expensive.  Bentley will be away three separate times for about 30 days each living with a trainer and learning what he needs to learn.  In between these board training stays, he will come back home and live with us at which time a trainer will come intermittently and work with us and make sure Bentley is continuing what he is supposed to be doing back in the home.  We started a fundraiser last week to raise funds for tuition to cover two of his three board training sessions - we will also be saving on the side for the third board train.  Needless to say, we are completely overwhelmed with how the fundraiser has gone thus far.  Since we have reached the first board train tuition, we are now able to talk with the trainer tomorrow about Bentley's file and set up the official date he will go for his first board train.  In the meantime, we will keep the fundraiser open to try and work our way up to his second board train amount so we can keep Bentley on a good schedule that will be best for what his behavior goals are.  We cannot say enough how much heartfelt appreciation we have to all our family and friends rallying around Meagan to reach this goal. 

Overall, the last few months have definitely been a line of stepping stones.  Some have been up, and some have been down...but that's how steps go anyway, right? One foot is always in the front, and one in the back as we move.  What matters in life is which foot we pay attention to - the one in the back, or the one up front pushing us to the next point in our life.  If we focus on the back foot, we will never see the potential...however if we ignore the back foot, we lose our momentum that pushes us forward.  Stepping stones are definitely a balance and the last few months have certainly unfolded in that sense.  We are so excited for the continuation of Meagan's journey and what it will bring.  Adding in Bentley's training makes me hopeful Meagan can enjoy more and more stepping stones on her own as she grows.


The link for Meagan's fundraiser is HERE (Help Meagan Get Bentley Service Trained).  We appreciate any donation whether it be monetary, sharing her link, spreading the word, or keeping all of us in your prayers.  I will be updating the fundraising site with facts about Bentley's training, and as he starts, what he is learning.  We look forward to what this new relationship can mean for Meagan's independence, and therefore her ability to do more with her sisters and the family. 



Friday, October 2, 2015

Dudley

About 8 weeks before Reilly was born, Brian and I decided to get a puppy.  It might seem crazy to some, but, we figured with a newborn on the way, why not? Our lives were about to change anyway, so may as well throw in another challenge to the mix.  Plus, we wanted them to grow up together and with all the sleeping and eating a newborn does, it was the perfect opportunity for me to train a dog.

We had decided on a labrador retriever - I had grown up with smaller dogs, but when presented the idea of a dog, Brian said yes but a larger "manly" dog.  I was fine with that, as I thought a larger breed would be better anyway for both tolerance of a young infant and toddler growing up along side it, and also for protection of the home if Brian were working late..etc.  So off we went to a local breeder about 2 hours from our home in Virginia.

The breeder was a family on a small farm, who happened to have a few very sweet AKC labrador retrievers.  They contracted with another larger breeder of top notch AKC hunting labs, and the large breeder's male was studded out to the family farm every so often for a new litter of AKC puppies... the best of both worlds - pure bred labs with great family lines, but not two parents from the expensive breeder so more conducive to family pets than working dogs.  One such litter included Dudley.

We arrived to observe the puppies one afternoon.  They were all playful, healthy, social and any one of them could have been a great pet.  We agreed to mark one puppy each, and when we returned after their last vaccines when we could officially pick one up, we would then decide.  I chose a girl puppy, and Brian chose a boy.  And that was that for several weeks.

On the way back to the farm several weeks later, we had a great time spending the whole drive thinking of "big dog" names for our new pet.  Dudley's dad from the large breeder was named Dangerous Dan, so we had quite a fun time thinking what we were going to name our new, big dog.  Upon arrival, the puppies were playing outside - we looked around the litter.  I saw the female dog I had marked with the marker, but could not find the male puppy Brian had chosen.  Then, as the pile of puppies started to disperse, there was Dudley.  At the bottom of the pack getting picked on and we just knew he was ours.   We also knew we couldn't give him one of our "big, scary" large dog names because, well, he had totally different personality.  Brian also knew he wanted to name his dog after one of his favorite Xavier basketball players.  We compromised, and so, Dudley Sato "came to be."

Over the years, Dudley has been an amazing dog.  From his snowy adventures in Virginia, to being so good with the kids, other pets, and other people, to the ways he has stepped up to protect us exactly when needed, he enriched our lives in so many ways.  Even in our move to Atlanta, he rode in the moving truck with Brian - never causing any problems, just sitting there like the second man in charge and enjoying his "daddy time."

Dudley was a gentle dog.  No matter who fell into him, who stepped on him, what tiny toddler grabbed on to him for balance, what animal, human, or anything else crossed his path - he was patient, kind and tolerant.  In all his years, I only ever saw Dudley bear his teeth one time at someone.  I had inadvertently answered the door one day (which I typically never do).  A man was selling something, and I wasn't interested.  As I went to close the door, he stuck his foot out and put it in my doorway.  Out of nowhere, Dudley ran as fast as I have ever seen, fur sticking straight up from his head down to his lower back, tail stuck straight out, and lips quivering upward as he bore his teeth growling.  He pushed his big old self directly through my legs and got right in the man's face.  Visibly shaken, the man quickly retracted his foot, upon which I closed the door quickly and locked it.  Obviously, we have people in and out all the time - so Dudley must have sensed something wasn't right and never hesitated to run to help. Not even 5 minutes later, he was back in his sunny spot in the kitchen, completely calm, sound asleep.  I will never forget that day.  It was the one time I saw that Dudley, if need be, would protect his family.

One of the surprising things with Dudley was his amazing ability to adapt to Meagan when she came home from the NICU.  It was like he immediately sensed she was different.  We began to notice him just laying at her side when she would sleep, coming up to her and sniffing/licking her nose if she was really lethargic some days, and when Meagan had seizures, we began to notice him just getting up, going over to where she was, and almost standing in a "pointed" manner - think, when a hunting dog stands still on a hunt.  It was so odd because we had never seen him do this before, but, almost always without fail, it ended up being a seizure day for Meagan.  He made himself in to somewhat of a seizure dog just by his own instincts picking up on her differences. As Meagan grew, he became her best friend (as he was with all the kids) and she would often just lay next to him and stroke his soft fur.  As she began to talk in the last year, she always leaned on Dudley and said "oh my buddy." And he was.

If you all remember, last January when Meagan was in the hospital with all her shunt malfunctions, Dudley was having surgery at the same time to remove a tumor.  It came back an aggressive form of mast cell cancer, already in stage 4 and there was really nothing we could do.  We didn't want to make him any sicker with chemo, and on top of that with Meagan's mounting hospital bills, it wasn't an option.  We chose to do pain meds and also steroids to help slow the cancer as much as possible.  He fought hard for almost a full 8 months - 6 months past the life expectancy the vets had initially predicted.  That's not surprising though.  Dudley loved his family, loved people, and loved life.  I had a gut feeling he would fight and fight until he just couldn't.

Two weeks ago today, I had to do one of the most heartwrenching things I have ever had to do - I took Dudley to the vet for the last time. Three days prior, he had suddenly stopped drinking water or eating any food, and in the two weeks prior to that, he had started to have trouble walking and breathing due to the tumors infringing on his shoulder and neck joints.  Now for any lab owners out there, you know how food crazed they can be! Even after surgeries or even when feeling sicker the last few months, Dudley would still try to lug his body up to the table or even countertops to steal food! I knew this wasn't a good sign when he had no interest.  After a few days of this, I decided to take a piece of steak and just give it to him so he had something in his system.  He sniffed it in my hand, turned his head away, and laid down, refusing to eat it.  At that point, I knew he was telling me it was time.

I remember the kids' kindness his last days.  Dipping their hands in water to try to get him to lick some sort of hydration.  Snuggling with him and talking to him to eat something.  Making him pictures and taking the pictures to put under his face in hopes he would see them.  They could see how bad he was, and they knew it was for the best, but they are also kids and didn't understand the "why."  They have never known life without him, and it was absolutely devastating for them.

The kids went to school that day after saying their goodbyes to their beloved pet.  Brian was very upset - although I had been the one with dogs growing up, he had been the one that bonded strongly with Dudley through the years.  Girl after girl, they became the "men" of the house and had an unbreakable love and respect for each other.  Dudley loved me and loved the girls, but when Brian was around, forget it.  I asked him if he wanted to go out of courtesy, but deep down I knew Brian just could not go to the vet. That same morning, Meagan has her day off of school and goes to a music class - I asked him to take Meagan to music to keep her in her routine, and I would take Dudley.  Before I left the house, Brian took Dudley on one final walk.  It broke my heart.

After that, I put Dudley in the car, and we drove off to the vet.  Dr. H (the vet) is extremely close to our family - she has been with us over the last 9 years of his care, through all our ups and downs and through Meagan's traumatic events and celebrations.  It was so nice to have her be the one there.  She took so much care with him - as soon as she came in and Dudley just laid there hurting, she started to cry. She said yes, we were right - it was definitely time.  She decided to forget any IVs, tables, etc... She let him just lay comfortably on the floor and another tech and I sat with him.  I cradled his head on my foot (where he loved to lay), and it wasn't even 30 seconds into his shot that I felt his head relax, and he was finally at peace.

It's been really hard without his big loving cumbersome "Dudley" presence in our home.  We all miss him dearly.  Reilly is upset off and on, Kaitlin doesn't say a word but sometimes acts out as her way of dealing with it, Anna cried for about a week straight, and Maura just asks a lot of questions about where he is, what he's doing and will we see him again.  I got the girls a book, recommended by Dr. H. called "Dog Heaven."  It is awesome.  Such a sweet, touching, and healing book.  It talks about God, and pets, and the love we have for our special four legged family members.  It was definitely helpful for the girls.

Meagan didn't really grasp what was going on.  After about a week or so, she started asking "Where's Dudley?" finally noticing he wasn't around.  I just tell her he is in heaven and we miss him.  She still asks where he is, and I imagine this will go on for some time. Poor thing.

Any dog owner knows how special these pets are.  They are the ones always waiting for you eagerly making you feel wanted and welcome, always the ones wagging their tails no matter how bad things are, and always the ones crawling in your lap with love (yes, Dudley did this even at 82 pounds) no matter how little, horrible or unwanted another person had made you feel that day.  Dudley was all of this.  He was such a loving dog, and waded through every trial our family faced with just as much grace and patience as anyone else.

RIP Dudley Sato.  He would have been 11 on October 26th of this year.  We still plan to celebrate - because even though he's gone, his impact will be with us forever.




Wednesday, September 23, 2015

The Difference - Happy 4th Birthday Meagan!

I remember Meagan's birthday last year. I remember her going downhill that day.  I remember coming home and my in laws not knowing what was wrong with her as she struggled to sit up and slurred her speech.  I remember driving her to the hospital while I had one hand on her foot, pulling on it with force every few seconds so I could keep her awake as she kept trying to slip into a deep sleep. I remember seeing her doctor in the ER who said she was going to the OR right away.  I remember sitting there waiting on her third birthday in yet another waiting room, dealing with another setback, going through another surgery.  I remember her going to sleep in a hospital bed with fresh incisions, medications and hooked to monitors.  I remember finally coming home after she had recovered and seeing the half made blue cupcakes we had purchased to bake because she loved Frozen, and the presents she hadn't opened.  What a difference a year makes.


The rest of Meagan's third year was not without consequence.  Her birthday surgery was unfortunately the beginning of another chain of surgeries and hospital stays that would take us through last February.  But since February, she has not seen the inside of a hospital.  Not once.  Not for an emergency scare, a surgery, an illness she couldn't fight off, or any other number of things she typically has had trouble with in the past.  Since February, she has been home.  Playing, laughing, learning, starting school, and doing everything that she should be doing.  For once.

Instead, this year, Meagan got to have a party with friends and family last weekend.  Today, on her real birthday, she got to go to the Zoo with her sisters, grandparents and dad.  She got to see the animals, take in the fresh air, look in wonder at things she was seeing for the first time, and touch animals in the petting zoo.  She got to stop at her favorite place on the way home and have lunch. She got to play at home, take a comfortable nap, spend time with her grandparents while I taught dance, and give cupcakes to all her little dance friends who support her so much.  Instead, this year, Meagan sat at the table with us while we ate dinner, licked her cupcake for dessert, and got her night feed comfortably in her own home.  Instead, this year, Meagan got to sit in her living room, open some presents, and be excited to be 4.  Instead, this year, her daddy got to tuck her in to her own crib, with her own blankets, animals and soft sheets.  No beeps.  No lights.  No 'owies.' ..... just a girl going to sleep after a long, wonderful, happy birthday.










I hope we have many many more birthdays like this with Meagan.  It has been refreshing to watch her through the day just enjoying life.  She is such a strong little girl, and has a will power like no one I have ever seen.  To think this time last year she was not even sitting, and despite all of last year's setbacks is now up on a walker, curiosity sparked, ready to engage and explore her little world is amazing.  

What a difference a year makes, this is true.  But the fact that she is with us at all, no matter if the birthday is the unexpected bad, or the oh so hoped for good, is really what makes the year great.  

Happy 4th birthday to our little spark - may your light always shine bright, in the dark or the light, and may we have many more years with you - because you are truly what makes the difference in our year.  We love you Meagan Theresa Gianna!























Wednesday, August 12, 2015

Let the Light Shine

The summer flew by quickly and there were lots of happenings! After we returned from our Nationals trip, we had some time at home to get things ready for school (yes, school.  It starts in early August here....which... is good.  By August and 10 weeks of summer, we are ready for it.. and it's way too hot to be outside!)  We made one more trip back up to the DC area to see my parents, my brother and his son and had a great time.

While we were there, the girls participated in another competition - this time it was the Nations Capital Feis.  We usually go back each year because it's near my family, and also the competition is put on by my Irish dance school I attended growing up, so it's fun to go back and see everyone.

My girls and me with my former dance teacher

When I say "the girls," this time I mean ALL my girls.  The feis had a special needs competition and so of course we signed Meagan up for it! She sits through so many countless hours of dance practices, shows, and other competitions, that it was definitely a great opportunity to let her be part of it all.  We weren't sure how she would do being up on a stage and with the loud music directly in her ear (she has a lot of sensory issues with louder noises) but she actually did great! It took her a little bit to get warmed up, but then she started kicking her legs, moving her feet, and at the end even did a cute bow.  The audience was wonderful and started clapping to help get her in the mood.  After she danced, she went with my husband to find her name on the results sheet and got her trophy! It was such a wonderful experience and a nice way to include siblings of dancers who may not have the same opportunities to do activities.  Again, the Irish dance community stepped up and made Meagan's day! We are so grateful for that.

Ready to go!

Finding her name


Kissing her trophy 


Once back home, it was time to get back to school! All the girls were very excited.  If you remember, we pulled them from their old school last November.  It was a midyear change, but they did great.  This year, they got to start with everyone on the first day which was exciting.  All the girls had a wonderful first week and love all their teachers.  I really can't say enough about this new experience for them - the teachers, the care and concern from the staff, and the organization and parental involvement is such a breath of fresh air.

All ready for back to school! 
(And yes, that's Dudley... he's still hanging on...)

Most of all the treatment of the children is amazing - as it should be at a school.  I have seen the girls transform, and most especially, Kaitlin, (who was the most damaged by her old school), realize that she is in fact smart and that she does love to learn. Just today, Kaitlin's teacher sent me the following picture.

The students had to write about their greatest gift ever received this year and Kaitlin wrote "To get into Mrs. S's class"..... To see this made my day.  I'm so happy she is in such a good environment with a teacher who actually loves her students and builds their confidence daily. It's a gift.



With back to school also came catching up on some "business" side of things.  Now that Meagan is starting to use her walker, we want to encourage her to do so whenever we can.  Because of this, it was finally time to go and get a Handicapped placard for the car.  Trying to have her navigate through busy parking lots just isn't safe - and since she can't go very far, by the time we would make it inside somewhere, she would be completely worn out.  We got Meagan's doctor's notes together and filled out the forms, and went to the county office where they issued her a tag.  She insisted on holding it, but we had a little problem when I wanted to hang it up in the car - she wouldn't give it back! Ha.... she said "No, M for Meagan!" when she saw the writing.  So, for that first ride home, Meagan held her placard the whole way. Once we got home, she finally let me have it to hang up.


As a gentle reminder, I want to use this opportunity to remind people to not abuse the handicapped parking spaces. If you park in these spaces even for a second to run in somewhere etc..., you could be blocking someone who really needs it.  In addition, if you are a caregiver like myself, don't use the sign when you are alone.  If Meagan is not with me, I do not use the handicapped spaces.  It is for HER, not me. It's not what it's meant for, and truly disrespectful to those who need it.  I only say this because I have seen this happen over and over again, including a few times now when I needed to park with Meagan.  Also, try to remember not everyone's disability is visible - there could be heart issues, or severe arthritis issues..etc..that bar people from walking long distances.  So while we shouldn't allow abuse of these special spaces, it's also important if someone has a placard to respect that, even if they look "normal."  We just don't know everyone's battles.  Thank you!

Another "business" item to check off was Meagan's follow up with Dr. R.... yep, you read that correctly... 'follow up.'  This was the first summer Meagan has been able to enjoy it with her family. The whole time.  No surgeries.  No hospital stays.  No ER visits.  And for the first time in many many months, she has finally made it to a regular follow up appointment.  She had another scan and an exam by Dr. R.... everything looked stable and she is released to not come back for a year.  A year.  We haven't even had 6 months without a surgery - so those were amazing words to hear! Of course we got a photo with her two most special doctors who have helped her through so much.  It is truly because of their innovation last year that she is able to function comfortably and have this long break from any issues.  We are so grateful to Dr. R and "Elsa" Blaire for their excellent care.



This has been quite a long update! I didn't do a great job keeping up with the blog towards the end of the summer, but those are actually refreshing words to write.  It means I was too busy keeping up with our girls and especially Meagan as she embarks on new things! Sometimes, no news is good news.  But even when there are no crises, surgeries, or hospital visits, any news about Megs and her zeal for life is good news.  So we share it, and hope it brings you as much joy as it has brought us. What she does or doesn't do really isn't important - because it is her special soul that makes her who she is...and the light that little soul gives the world is undeniably infectious. 

Meagan's post dancing interview :)


Thursday, July 9, 2015

Independence

The last few weeks have been filled with such busy times, I realize I haven't updated the blog in a while.  So many people comment about summer break, but, those of us with busy schedules, lots of kids, or other things going on know it's just as busy as the school year.  Add on to that a child who can be unpredictable, and has a lot of extra needs and extra "stuff" it can be overwhelming.  What should be fun times to travel can sometimes turn stressful.  Luckily most things went very smoothly this time.

Towards the end of June, I had another follow up with the perinatal specialist.  This time I brought all of my girls with me so they could see their little brother or sister on the ultrasound.  I was a little concerned about Meagan because she freaks out when the lights are turned off, but she actually did ok.  A lot of that had to do with the doctor I saw.  After my experiences with Meagan and the last appointments with this baby, I told my OB about what they had said.  She was not happy and told me that I had to see Dr. A from that point on.  Upon checking in at the specialist, I asked if I was seeing Dr. A and they said yes.

 I knew from the minute he walked in that it was going to be a great match.  The very first thing he said to us was "I know we aren't going to find out gender, but I'm going to call your baby 'he' until the birth because he or she, I can't say 'it'.... there's a person in there!"  Yep.  My kind of doctor :)  He talked to all the girls about what they were doing this summer, wished them luck at Nationals, and asked them if they were excited about a new brother or sister.  Surprisingly, Meagan didn't freak out either.  I think she could tell his sense of calm, and also that he was genuinely interested in our family.  He talked to Meagan and told her she was pretty and directed her attention to the big screen on the wall so she could see the baby.  Meagan was hilarious - she kept saying "wohhhhhh" and "hi baby!"  It was the cutest thing ever.  The rest of the girls were equally excited and noting every part of the baby and were completely amused by the baby rolling around, stretching out, and ultimately, resting his/her hands under the chin as if we were taking a picture.  Dr. A said all looked ok so far, and we would go ahead and have another scan at 18 weeks to look at the brain anatomy in more detail.  He told the girls if they had any Irish dancing shows locally to tell him and he would definitely come.  We left with a good feeling, the girls were ecstatic having seen their sibling, and Meagan of course continued to ask for "the baby on the movie."



After the appointments, we hurried home because we had a lot to pack.  Nationals was in just under a week and we had to pack the car to leave.  We brought Meagan's wheelchair and walker so for longer distances she could rest, but in the hotel she could practice walking and keep up her progress. We stopped on the way up at my parents' house to see my brother and nephew, and also take a little break so I made sure to get out and walk as much as my OB instructed.  Meagan had fun at Nana and Pop Pop's on our stop over.
Trying on Pop's hat


Riding on my brother's old horse from
 when we lived in Germany


The week was a lot of fun for everyone.  Reilly and Kaitlin competed in their first North American Irish Dance Championship ever.  They danced really well and were so close to recalling! They learned a lot and are excited for a great Oireachtas (regionals) in December.  Anna, Maura and Meagan were enjoying time with my parents, who came up to help us.  They got lots of trips to the pool, some exploring of Providence, and also lots of time to watch dancing.  We were able to have a little break in the middle of the competition when both girls had some time off and took the family up to Boston.  We visited Quincy Market, walked the entire Freedom Trail and climbed the tower at Bunker Hill.  The girls had a great time seeing all the historic sites and getting out in the fresh air. Kaitlin was able to find a new solo dress and was over the moon to wear it on her dance day! The girls were excited to see their cousins who also dance, and also stop on the way home to see Brian's sister and her family.  They just pcs'd from Newport back to the South so it was the perfect stopping point on the way back to the house. 

Reilly having some fun after her soft shoe round

Kaitlin ready to dance treble jig in her new dress!



Along our walk in Boston of course...


Meagan at the Market


For Meagan, it was a very exciting week as well.  Since she can't walk, we all know how obsessed she is with the Irish music and rhythms.  She loves looking at the dresses, shoes and all the dancing.  She would clap every time dancers took the stage and ask when the music would start.  She got a lot of practice in her walker around the hotel.  One night she met a few dance teachers from Chicago who talked with her a little bit.  Every time we passed other dancers or dance families they would smile at her, or tell her encouraging things like "good job!" or "wow you will be dancing in no time!"  It was so nice to see and hear all the positive responses directed towards Meagan.  She was extremely spoiled (in a good way) the entire week with the positive attention and motivation to keep moving.  She even got to spend some time with Emma and Erin as we went over scores one night.  Meagan was in heaven spending about an hour with them talking about dance, playing with them and flipping through their phones looking at videos and pictures.  We are very grateful to have such warm hearted teachers.


Meagan talking to anyone who walked by as she 
worked her way through the hotel lobby


At the pool with mommy

As we made our way home and started to unpack, I got a reminder on my phone that Meagan has an appointment with her Neurosurgeon next week.  I had almost forgotten but sure enough it crept up on us.  My second thought was that we have finally had a summer with NO hospital visits.  No ER trips, no admissions, and no surgeries.  It feels strange to say that, and I'm almost wary to admit it, but I have to.  It's something to celebrate.  Meagan has been able to just have summer for the first time in her little life.  No pokes, owies, hospital gowns or recoveries.  It dawned on me that for just a little while, we have actually functioned as normally as we can and didn't even realize it.  

Meagan will continue with her PT now that we are back home - more meetings with her therapists outside of the home to facilitate more functional walking with her walker.  She does well but still tires out so easily.  She stops a lot and will just sit down.  I can't blame her! It probably feels like us running up hundreds of stairs every time she pushes her little legs to take step after step. To help with her balance and hopefully build more strength in her hip area, we have been working with her on independent standing.  On the way home in the hotel, Meagan decided that was her time - and showed us this: (don't worry, I was right there and caught her :) )




Sometimes things with Meagan and life in general can seem overwhelming.  I hide it pretty well (thank you type A personality) but it's just our existence.  So when we have these experiences of a great week away with great family and friends, and great encounters with strangers, it just reinforces the strength in me that I need to save up for the harder times. Seeing Meagan maneuver her walker through the hall, bumping in to tables, chairs and walls, but then self correcting... or seeing her get stuck but have the awareness to say "help!"..... or seeing her be able to go where SHE wants to go and talk to whom SHE wants to talk to.... it was overwhelming in a different way.  For the first time in almost four years, Meagan was finding her own independence.   She was making choices, making her own path, and for better or worse, deciding exactly what she wanted to do.  She's always had that spirit in her - and now seeing her body start to respond somewhat to that is amazing.  

We hope everyone had a wonderful Independence Day week with their family and friends.  We know we did - and watching Meagan begin to find her own way made it that much more meaningful.