Breakthrough

There have been quite a few updates with Meagan in the past few weeks.  First, as you know, we figured out on her hospital stay that her Chiari Malformation was starting to cause her distress.  She was having pain fits (and still is), and was having episodes of discomfort, and throwing her head back.  Since then she also prefers to lay down whereas just weeks before she preferred to be held up in a sitting position.  We have also seen her head puff and sink over and over again in the last week.  So she has a bunch of different things going on probably causing all her discomfort and fussiness.

Severe sinking..yet again...despite being on the same setting as before.

After her three episodes on Easter Sunday, I decided it was time to call back Dr. R.  While I was in agreement about waiting for Meagan to grow for surgery, I was also not ok with just letting her go through these pain fits.  First of all, these episodes are painful for her.  As her mother, and just as a human, I have a problem with that when there is possibly a way to alieviate the pain.  Second of all, on her good days, if we are burning a ton of calories helping her work at PT, then on her bad days where she has these fits, she was burning a ton of calories as well during these episodes.  That's not good for her in general, and especially not with weight gain.  Enduring these pain fits means she is burning calories from both ends, if you will... on her good days and bad days... and that is not good for meeting our weight gain goals.  So I gave a call on Easter Monday asking what to do - if there was possibly a rescue med to have on hand, just like with bad seizures, so when she went into a fit I could calm her down, let her rest and wake up "reset" in a better mood.  It didn't take long for Dr. R to call me back.  Matter of fact, I was very pleased with his response time.  Within just an hour, I got a call back from him and he spent a good 30 minutes on the phone with me talking about possible solutions.

What our Easter Sunday looked like:

We came to the conclusion that the best way to try and tackle these pain fits was to attempt at least part of the Chiari decompression surgery.  He said the surgery was basically two parts.  First where they work at opening up the area by shaving the bone and possibly removing some of the top vertebrae.  Secondly, where they open up the dura (bottom part of the brain) and allow more fluid back into the area being crowded.  Dr. R said very bluntly he would not attempt the second part of the surgery now.  He said with Meagan's small size, there was an extremely high risk of her bleeding out and/or leaking spinal fluid...both things we did not want to chance.  I agreed.  He did say, however, the first part of the surgery should be no more risky now than later, and possibly by opening up that one part and shaving the bone, we could give her some temporary relief buying us time for her to grow bigger and stronger for the second part of the surgery.  We discussed some final details and within a few days, Dr. R's scheduler called me.  Pre-op was set for Monday and surgery Tuesday morning.  Surgery would be about 3 1/2 hours long with a 3-5 day hospital stay.



Another development in the last week has to do with Meagan's GI doctor.  As you know, the whole debacle of trying to see a new doctor at her GI practice has been quite a feat.  We finally got an appointment for late March, and we were all set to go.  However, just a week before that the kids had fallen ill again - some with the usual "creeping crud" viruses and then 3 of the girls developed Strep.  Maura seemed particularly bad for some reason.  I couldn't figure out why she seemed so terrible especially since she had started on her med and been resting.  However as the afternoon went on, I knew something was terribly wrong.  She was the true sense of lethargic.  Not very responsive. Was "passing out" standing up.  Then as she was laying on the couch that evening I took her temperature - 106.  I double checked with another thermometer - 106.4.  I knew I had to take her into the hospital.  I called Brian who left work immediately and came to meet me so I could take her in.

Something was terribly wrong

Once we got there, the nurses checked us in.  They listened to her and then asked me if she'd been having trouble breathing.  I hadn't remembered any particular time, but now that they mentioned it, in hindsight, I did notice her working a little harder at night if she crawled into bed with us.  Apparently she sounded so bad, it got us a fast track to the ER doctor (who was incredibly nice) and a chest x-ray.  Just as the ER doctor suspected, Maura had full blown pneumonia.  What? I was completely shocked.  We had been so distracted by her bad case of strep, it just wasn't apparent to us.  But now it all made sense.  Needless to say, she was admitted to the hospital on fluids, IV antibiotics, and other medicines.  Ironically the respiratory floor was ful, so we ended up on the Neuro floor.  The plus side was I knew a lot of the nurses already.  The down side was...yep... you guessed it.  That next morning? Meagan's long awaited GI appointment.

She was definitely staying. She could not keep her sats above 79 :(

Day 3 - Starting to be more alert

I had no choice but to call and cancel to reschedule.  Maura was so sick and I couldn't leave her.  The office manager on the phone said I would have to reschedule for the end of April.  Excuse me? I explained the situation - Meagan having lost weight over a long time, all efforts exhausted, and us needing a weight plan for her upcoming surgeries... nonetheless, the manager was still incredibly rude and obstructionist (in my good friend Amy's words) and she refused to give us an earlier appointment.  The ultimate insult was when she stated "I had my chance with my appointment I cancelled."  Wow, I thought. I'm sorry. I hadn't planned on one of my healthy children being in the hospital with pneumonia . I explained to her that Meagan really needed to be seen much sooner than another month.  She had lost a pound in a week and we were at the point where we needed GI intervention.  The office manager ignored my requests and told me I would have to wait. It wasn't an emergency.  At that point, I felt a bit helpless. Here I was with one child sick, and the other who desperately needed her GI appointment stuck without one.  I knew the office manager was not taking me seriously and probably had not even consulted with the doctor about our case and what had happened causing us to miss the appointment.

Meagan had lost a pound in a week..back down to 15 pounds at almost 19 months old.  

She needed to be seen.

Fast forward to the end of the week - after decidedly being the "squeaky wheel," and enlisting the help of a few dear friends who also see the same doctor we were supposed to see, the office manager called back a few days later.  She had "magically" found an appointment open for the very next Wednesday. She didn't sound too pleased on the phone. (ha)... but sometimes it pays off to keep pushing (and have a few good friends pushing right along with you on your side).  We were all set for a Wednesday morning appointment and I was very glad.

We got into the office early on Wednesday.  We met the new GI, Dr. B, for the first time who was incredibly nice.  We went through Meagans history from the beginning....her birth, her eating troubles, what we have done over the last year and a half to help her, and what our goals were for her future.  He was very thorough and talked about two options for Meagan in his opinion.  First would be placing another NG tube (the tube that goes through the nose) to try and bolus her feedings.  Basically, whatever she didn't finish in her bottles, we could bolus through her tube.  The second option was to go straight to a gtube.  (tube that goes directly to the stomach).  We talked thorugh the pros and cons of both options, and he asked my opinion.  I told him I really had no opinion for or against either - my only worry with the NG would be she would grab it out.  It is a blessing that she is able to grab now and use her hands - but - it makes things like this tricky.  I just had a feeling she would not tolerate it.  He suggested we try - and if she pulls it out, then we know we need to go to a gtube. He said instead of waiting around why not come back the next morning for a nurse's visit - since Meagan had already been on an NG tube as a baby, he felt no need to admit us to the hospital to place it.  He said the nurses could do it the next morning and then give me a quick refresher course on how to care for it.  I agreed and we left the office.

The next morning I returned bright and early with Meagan.  We met Dr B's nurse and she took us back to a room to get the tube placed.  I knew almost immediately this was probably going to be a no go.  Meagan fought and fought the whole time and did not want anything to do with the NG tube.  I really don't blame her.  She hadn't had one since 8 weeks old, so why would she tolerate it now at almost 19 months old.  But, nonetheless, we tried.  We wanted to see if I could get her distracted and even asleep for a little bit if she would grow to tolerate it.

So defeated. Poor sweet girl!

Once the tube was placed, we left the office.  I had to hold down Meagan's hands almost the entire time to keep her from pulling at the tube.  Dr. B had recommended we buy a scale to keep track of her weight at home since Children's was a drive and our Ped's office would require copays.  We stopped on the way home at the store to get the scale.  Enter: the first time Meagan pulled out her NG.  I put it back in and we continued on our way.  We got the scale, and checked out.  I had to go get Anna from preschool so we drove to the school.  I had Meagan out for a little bit while waiting....enter: the second time Meagan pulled out her NG.  I placed it back in and went to get Anna.  I was able to get Meagan to sleep and luckily she stayed asleep as we got back into the car.  About 5 minutes from the house, I heard a choking/coughing sound from the back.  I looked in the mirror and saw Meagan had pulled off all the tape from under her nose and around her cheek.  She had pulled the tube almost all the way out but the end was stuck on the tape and she was gagging.  I quickly reached around to her seat and grabbed the end of the tube and pulled it the rest of the way out.  I knew at that point...and NG was not going to work. At all.

I did get one good smile out of her as soon as she woke up......

....but that didn't last long and she pulled the tube out... again.

As soon as we pulled into the driveway, I called the Dr. B's nurse. I explained what had happened and how Meagan had pulled her tube three times, the last time almost choking on it.  I told her at that point, we were skipping this step.  It was quite obvious she wasn't going to tolerate it.  We were comfortable with moving on and talking about placing a gtube.  She agreed and said she would have Dr. B call Dr. R to see if by chance they could coordinate surgery on Tuesday.  Dr. B said it probably wouldn't happen, but he would ask anyway, which I appreciated.  Dr. B called us back yesterday and said as he suspected, he could not coordinate surgeries with Dr. R.  He said the Chiari surgery is too invasive and lengthy for Dr. R to feel comfortable coordinating another surgery with a child Meagan's size.  I completely understood and wans't disappointed.  It would ahve been nice, but, Dr. R knows best.  Dr. B said to call back after Meagan's Chiari surgery and we would schedule her gtube surgery shortly after.  So that's where we stand with GI.

I'm so glad we finally got in with Dr. B.  He truly shows he cares for his patients and takes the time to listen to the full story and see what the best path is for the child.  He tried the least non invasive path first, and when it was apparent it wouldn't work, he moved right on to helping us schedule gtube surgery.  I wish the NG would have worked, at least for a while - just to give us a chance to bolus more feeds for Meagan.  But, the goal of weight gain is to improve her quality of life.  There is no way her constantly pulling at a tube, and crying because it was in was an improvement in her quality of life.  We want to help her gain to do more - not make her miserable.  So on to a gtube we go.  At this point, I honestly feel relief for it.

Nana comforting Meagan after a rough evening

So quite a lot going on for miss Meagan in the next few weeks.  We are hopeful that the Chiari surgery holds some relief for her with her pain episodes and re-motivates her to start sitting up more often again with more comfort.  Also, a side effect of relieving some of her Chiari malformation could be an improvement in her eating ability, maybe making a gtube a short term tool she needs until she builds strength.  And of course, hopefully a lessening of her apnea and low heart rate alarms.  All things that will be great improvements for Meagan, and truly help her keep going towards the better quality of life goal we want for her.   Hopefully, at the completion of this next chapter, we see the breakthrough Meagan has been needing. So we wait anxiously for Tuesday.  We are confident that God will once again put His healing hands over Meagan and his protective heart along side hers to give her the strength she needs to pull through once again.

"........the LORD'S promise is tried and true; he is a shield for all who trust in him..."  PS 18:31

Expect the Unexpected - Part 3: Surgery

Well after switching surgeons and waiting for what seemed like eternity, my surgery date finally arrived yesterday.  It couldn't have happened at a better time, it turns out.

Just for a brief summary:  I had found a small bump behind my right ear.  I forgot about it, and then rediscovered it after Christmas-time.  It seemed larger so I had it checked by my primary care doctor, who referred me to an ENT.  The first ENT I saw did the ultrasound and saw a tumor sized just under 1cm. They also did a fine needle biopsy which showed certain salivary cells but was inconclusive.  They said most of the time these were benign so we could just watch it. Upon my own research though, I also found that #1. These particular types of mixed cells have a high occurrence of degenerating into malignancies if left alone, and #2. These particular type of tumors, even if benign, can continue to grow and increasingly threaten facial nerve bundles that run right through the same area.  I had asked about having it out and the ENT was ok with that but I wasn't comfortable with how they would do the surgery and where, so I went to a second opinion.

The second ENT surgeon I saw was amazing.  To recap, he said he wouldn't watch it, but definitely have it removed (for the reasons I stated above), and he also would try to remove it a different way so he could completely avoid my facial nerves, something important for my musicianship, and also just to me as a person.  He was booked and then out of town so we had to wait until this past Friday to have the surgery.  But boy am I glad I waited for him.

Fast forward to this past week.  I went to my pre-op Tuesday.  Dr. P went through all the usual paperwork and talk-through about surgery, what it would entail, and the possible outcomes.  He was confident everything would go well. Based on the scans the tumor looked relatively small and easy to navigate.  I got a call later that day that surgery would be Friday morning so to arrive early to the hospital.  I was told to pack a bag because he may want to keep me overnight depending on how things went.

My in laws had been helping me the entire first part of the week to help me with all my pre-op obligations, and so I could easily pop in and out of Meagan's GI appointments..etc...We had a mini birthday celebration on Wednesday night since they would be leaving the next day.  My father in law cooked Fajitas and my sister in law made the most incredible Margaritas.  My mother in law helped with the kids and we had a great night of fun, talking, eating and spending time together. I got some nice gifts and some good family time.  Overall it was a really nice night.

Birthday celebration #1.....

My parents came in on Thursday to trade off with my in laws.  My in laws left and I spent most of Thursday prepping by doing laundry, cleaning and organizing, packing my bag and getting things ready for the weekend while my parents held down the fort with the kids.  Of course we had another smaller birthday celebration that night since it was my actual birthday.  I didn't want to eat much the night before surgery but my parents had brought a small cake for me. Brian lit the candles, the family sang to me and we had fun opening a few presents and eating a little bit of cake.

Birthday cake with Brian and my parents...

Hello 33!

The next morning came quickly, which I was glad about.  We drove to the hospital and checked into the outpatient center.  The pre-op nurses were so incredibly nice.  I must say it felt very strange to be laying there and have something about to happen to me - I was so used to being the support as something was about to happen to Meagan. A very strange feeling indeed.  Once all the pre-op signing and testing was finished I got my IV.  Like mother like daughter - I also needed the IV team to come and find a vein. I guess some of Meagan's tendency of being a hard stick is genetic :)  Anesthesia came in and talked to me about how it would all go - I was listening to him closely as I had never been under before. He told me I may have a sore throat for a few days from the breathing tube and warned me of the nausea possible when waking up.  Next another doctor came in to talk to me about nerve monitoring.  He explained that they would be putting needles all over the right side of my face to monitor my nerve function in real time during surgery.  If Dr. P got close to any facial nerves, the needles would send off immediate signals that would tell him he was near nerve centers and it would help them to preserve nerve function.  Pretty amazing stuff!

Pretty nervous about the anesthesia

Finally I got wheeled down to the OR.  The nurses asked me my name and what I was having done, and then that's the last thing I remember.  Next thing I knew I was waking up in my recovery room.  I kept hearing my alarms go off and nurses would come in and shake me, or Brian would reach over and push on my shoulders.  Apparently I was forgetting to breath as I was coming out of the anesthesia so they kept having to stimulate me somehow until I woke up a little more.  Once I was more awake the pain definitely set in.  I could feel the whole right side of my neck, face jawline just throbbing with pain.  I had a small drain also coming out from that side and my ear was numb.  ( I was warned about having a numb ear before the surgery as a nerve in my neck had to be severed).  Finally Dr. P came in to talk to me about surgery and what they found.

He said once they got me opened up, he knew it would be a longer surgery.  He said the tumor was actually quite a bit larger than they had anticipated.  They were expecting a mass under 1cm, and instead found a tumor that was over 2.5cm large.  He said it also had uneven borders on the back and was growing aggressively into my surrounding lymph nodes and tissues.  He said the initial frozen section did come back benign, but, because of the way the tumor looked and its aggressive growth pattern, he decided to not only take the tumor out, but also some lymph nodes, and a large margin of surrounding tissue. He also ended up taking about a third of my entire gland.  Dr. P said we should have full and final results in 5 days but he was hopeful since the frozen section was benign the rest of it would be too. That's the way I'm feeling as well - I'm just glad he did what he did in the OR.  The type of tumor it was, although mostly benign, have the highest rate of degenerating into malignancy, and also the way it was growing it would have soon impacted my facial nerves.  I'm so happy I went with a surgeon who was not only experienced, but who also made the best split second decision for me and my long term health when faced with a little different scenario than anticipated in the OR.  He said because of the large margin he is sure he got all of the tumor, and for a tumor that has a normal recurrent rate of 20-40% he feels my recurrent rate has been cut to 4-7%.  All good things to hear when you come out of surgery, especially considering what the consequences could have been if I had stayed with the first surgeon who wanted to "watch and see."

My lovely drain

Incision site 

Because of my little breathing issues, I had to stay until 5pm surgery day, but once my vitals stabilized, Dr. P said I could go ahead and go home.  He said that I would be pretty sore from the surgery as it was more invasive than they originally thought so to make sure and take my pain medication.  He also said my throat would be sore from the breathing tube and that my face may start to feel bruised over the next few days from all the nerve monitoring needles they inserted.  He also gave me instructions on how to care for and empty my drain and said I can come back on Monday to have the drain removed. Dr. P said I was to be on a two week liquid diet.  He wants to minimize to eliminate any chewing because it will stimulate saliva production which could lead to cysts being formed as my surgical site is trying to heal.  The nurse then wheeled me out to the car we headed out.  Of course in true "Molly" fashion, Brian and I made a stop at Walgreens for some cold drinks and my medication.  Anyone who knows me knows I have a big problem with just laying around in bed for prolonged periods of time. :)

Maybe a liquid diet won't be so bad?

Since being home things have gone 'ok.'  I feel bad complaining as I know there are things MUCH worse people go through, including all our Hydro kids who endure so much.  However that said, I think I earned a little bit of a right to whine a little bit. My jawline is definitely painful and really hard to move.  There is no way I can chew anything - matter of fact I've probably even been talking too much over the last day because today my incision site is absolutely on fire with pain.  My throat is still a bit sore and face still bruised feeling, but the most sore area is the site behind my ear where he had to dig for the tumor.  I can feel pain from the back of my jaw all the way deep inside my inner ear area and back out to my face.  I know it will get better with time, but for now it is really annoying.  I'm trying my best to stay on top of the pain and rest because Meagan has surgery coming up in 3 days so I want to make sure I'm strong enough to be there for her.

I am so so thankful I decided to listen to friends' and family's advice and go get a second opinion. Dr. P truly knew what he was doing, and knew in that instant what he needed to do to protect me from the tumor doing any further damage down the road.  I will feel completely at peace in a few days once I have those final results in hand, but, for now I feel pretty good that no matter what he did a great job and we are rid of that awful thing.  It is still so random this happened, but, I am better for it. If I could tell anyone a lesson from this it would be to know your body - and if something doesn't seem right, by all means get it checked.  Further, if you aren't comfortable with one doctor's answer, go to another until you have your answers. It could very well save your life.

 Now I look forward to healing, some final good news from pathology, and turning my focus back to Meagan where she will need me most.  Thank you all for the prayers, support and love.

 My favorite place to recover

Glimpses

After a very rough week for Meagan and a lot of new information to digest we have had a lot of well wishers and prayers offered. We are thankful for every one of those and appreciate all the love and prayers. I was asked a several times by friends how I manage with the 5 girls, household obligations, and balancing that with Meagan's good and bad days alike. When she is having a rough patch, how do I do it?

I can't speak for any parent but myself. And the answer for me is ... I just do. I tend to worry or seek out information with a few in my trusted close circle of friends (non hydro parents and hydro parents alike). I have my core group of confidants with whom I can vent or seek advice. But outside of that group, I just "go." I'm pretty sure I've always been like this whether it was school, a project I was working on, or a job...my parents can definitely attest to that.  When things happen with Meagan, that innate sense in me to turn on the afterburners, so to speak, just kicks in. Especially with the unexpected things, I just live in the moment. I tend to be more defensive and on the "attack" than worrisome. My worry usually comes after the event. I guess this is a gift from God so He allows me to focus all my energy on Meagan at the times she needs help.

Coming back home from unexpected hospital stays is always a relief. Not just that Meagan is ok and we are home, but that I am back with my other girls too. This is so hard on them at times when I have to be away with Meagan. And while Meagan requires extra special attention and care, my other girls need me too...in so many ways.  They are just incredible little human beings, so coming home to them is always a joy.

Yesterday, I was getting ready to teach some lessons and the girls were going upstairs with Brian.  Reilly approached me on her way upstairs and told me she had written me a note and wanted to read it to me. This is what it said:

"Dear Mommy, you are the best mom in the world. I am so glad that you are my mom. I just couldn't do anything without you. Love, your mommy girl, Reilly"

Her sentiment was so sweet and genuine. It was definitely a note I will be keeping.

So besides all the normal parent stuff and the unconditional love and the pride in being able to help them or comfort them ... Moments like that are really what gets me through the trying times.  The glimpses I see showing me our girls are turning into good people. Loving people. Prayerful people. Grateful people. Those are the glimpses that keep me going and make even the toughest days oh so bright.

The Parent Manual

It has been quite an interesting week for Meagan.  What started off as a seemingly simple issue snowballed into a much larger problem.  And from that we have finally started to have several answers available to us to help make a long term plan for some aspects of Meagan's care.

Let's rewind a little bit - Meagan has been having random pain episodes.  She will throw her head back, and fuss or cry, and be overall just miserable.  It happened here and there really for the last several months, but I never noticed any increase.  Likewise, I never noticed any significant change in her mood or her progress with therapies, so for the most part, these episodes sat on the back burner.

A few weeks ago, I noticed they started happening a little more than I had remembered.  What got my attention was not necessarily the frequency, but, the intensity.  She reacted like someone had just poked her with 1000 pins, and would cry, moan or scream in pain. She also would hit or scratch at the back of her head or punch herself in the sides of the head.   Along with this behavior, she has increasingly been wanting to be upside down.  She wants to hang her head over the back of my arm, or wiggle herself up her nap nanny to sleep with her head hanging halfway over the top of it.

For Meagan, these behaviors were new and also bothering her.  Now that said, she wasn't screaming 24/7... if that were the case we would have been at the ER ages ago.  But, those who know Meagan, know that unless she is hungry, she is an incredibly happy person.  She can sit contently for hours and just take in her surroundings.  She is blissfully and innocently content almost all of the time.  In recent weeks, her contentedness seemed to be a little less common.  Times she wasn't upset, she wasn't necessarily happy either - there were a lot of blank stares, or just sitting and looking out with very tired eyes.  She was sleeping a bit more and more frequently during the days.  And at night she was starting to wake up startled - I assumed with a nightmare or something like that.  To the average person, probably nothing looked "that" wrong with Meagan. But I knew something was wrong.

The first stop we made, of course, was the Pediatrician.  If it's any sort of "normal" or "simple" problem, we jump for joy.  Give me flu, ear infections, strep....anything along the common illness spectrum is better than something going on inside her brain.  I emailed Dr. R (Neurosurgeon) to give him a heads up on her behavior but told him we were going to see the Pediatrician first.  We saw Dr. B on a Thursday.  Surprisingly, the doctor found an infection in her right ear.  Her 5th since December, so after we left, we also called and made an appointment with a pedatric ENT to talk about tubes.  I left thinking we were in the clear.  I figured as soon as the medicine was in her for a few days we would be back to our good old typical Meagan.

The weekend came and went and while she still had happy times, she was still also having the fits.  Hitting. Crying. Wincing her eyes, as if in pain.  I was confused because she had been on the antibiotic plenty of time by then, so when Monday came around, back we went to the Pediatrician. I also emailed Dr. R to let him know she was still having episodes and we were out of ideas if all checked out ok with Dr. B.  I walked in to the pediatric office expecting her ears to be much worse.  Dr. B said her ears actually looked better.  We left and chalked it up to residual irritation after having her ears hurting.  Then came Wednesday.

This pretty much describes our Wednesday

Wednesday started out like any other day.  We got up, sent the older kids off to school, and started about our day.  Then I heard Meagan taking short breaths like she was in pain. Following that was her head thrashing, hitting, and crying.  I picked up my phone and emailed Dr. R to tell him she was still acting out.  I also told him we would go to the Pediatrician one more time to double check her ears but I didn't think that was the culprit.  Dr. B did a 'once over' on Meagan, and all looked ok.  Her ears looked even better than on Monday.  There was no 'easy' answer as to what was causing her episodes of discomfort.  In my gut I knew it was probably brain or GI related and Dr. B agreed.  Within about 15 minutes of leaving the Pediatrician, I got a callback from Dr. R's office.  They advised to head to Children's, get Meagan a CT, and then come over to the office to see Dr. R and discuss.

We drove down to Children's hospital.  Of course being unplanned, I had the girls with me. When we got back to CT, I realized I wouldn't be able to be with Meagan because of the other girls being there.  So we stood outside the door while Meagan got her CT done.  The first CT I haven't been in since she was born! I could hear Meagan through the door and out into the hallway. Hearing her made me want to go in there and be at her side.

After the CT we walked across the street to Dr R's office.  Meagan was in another fit, but I was kind of glad. Meagan has this strange 'bond' with Dr. R.  Even when she has been the most upset or the most in pain, she always will smile at him.  At the very least, she will stop her fussing to look at him or listen to him.  Dr. R had never really seen her this upset.  Typically, when one of my kids is really sick, the minute we get to the doctor they are smiling and I look like an over-worried parent.  But not this time.  She would not smile or interact at all with Dr. R.  He was immediately worried about her.  Besides our family, Dr. R probably knows Meagan the best.  He knows her tendencies and her moods, and it was obvious to him something was really hurting. He suggested to me that we admit her that day and see what was going on. He had a suspicion but would need some tests to be sure. I agreed. Dr. R likes the path of least resistance   He won't open up a child or inconvenience a family unless absolutely necessary...so when he says it's time for admission and tests, I know he is right.   He also said while we were there, he could consult with GI and have them come see us too.  I was all for that since we had been given such a runaround by GI lately.  If Dr. R could 'help' them along, by all means.

While they drew up admission papers, I ran home.  Brian made his way home too and I dropped the other girls off with him.  I packed a bag, got a few items for Meagan, and then the two of us were off to Children's.  We checked in, got our room, and settled in for the night.

Meagan was still pretty upset that first night.  She was so restless. Moaning. Crying. Sleeping.  Not herself.  The nurse came in to see us and said that Dr. R had given instructions to leave Meagan alone that night. No checks. No blood. No IVs.  Just to let her rest and do the IV in the morning before her MRI.  He did, however, want her on monitors to watch respiratory rates (which turned out to be a good thing).   All night her alarms went off for breathing.  She never stopped, but her respiratory rates were really low and would stay low. When she was asleep they would hover around 10 or 11 (typically a child her age should average 20-35 per minute).  Occasionally she would jolt like she did at home and her breaths would shoot back up to 20.  Other times, the nurses or myself could get them back up by rubbing on her back, or stimulating her somehow.  It definitely worried me and sparked my interest as to why this was happening.  Morning finally came and we were set up for MRI.

Meagan's IV was placed (of coures by the IV team as she's such a hard stick)  and we headed down to MRI.  I walked back with Meagan and laid her on the table.  They gave her the sedative through her IV and in about a split second her eyes rolled back and she was out.  They told me it would be close to two hours for the scan.  This was honestly the first time I didn't feel badly about sedating her.  She had such a rough time recently, had been sleeping horribly, and was not happy that I was glad for a little while she was able to get some rest.  After finally getting myself something to eat and drink, I went back to the sedation room.  Meagan was carried back in after her scan.  She looked so peaceful. It took her a good while to wake up and finally the sedation doctor had to come in and help her along. After a lot of back rubbing, talking, singing, and rubbing her head, Meagan's eyes finally started to roll around.  Once she was stable enough we were taken back to our hospital room.

Dr. R was in surgeries all day but was able to call me that afternoon.  He said that as he suspected, he did find something on her MRI and would go over details with me later that day.  He said surgery for the issue wouldn't be done on this particular admission, but that it is something that would need to be fixed.  In the meantime, he had two more surgeries so I was to consult with GI and start everything with them.

Later that day, Dr. R and the PA finally came by to discuss Meagan's MRI.  They told me that Meagan has a Chiari Malformation at the base of her brain, which is what he had suspected based on her behavior and my descriptions of her latest episodes.  (You can read about Chiari here and here.)  In short, a Chiari Malformation is is a neurological disorder where part of the brain, the cerebellum (or more specifically the cerebellar tonsils), descends out of the skull into the spinal area. This results in compression of parts of the brain and spinal cord.  The way Dr. R explained Meagan's Chiari to me was by telling me to think of an open wine bottle.  Then imagine trying to cork that bottle - but instead of using one cork, you had to use two.  My first thought was "ow!!" I think I would have screaming episodes too.

  There can be several indicators of Chiari such as head and neck pain, balance issues, poor weight gain, and breathing issues.  A lot of the things Meagan has struggled with lately with are also symptoms of Chiari.  Dr. R said he feels she does need the decompression surgery (You can read about the decompression surgery here).  He is hesitant at this time however because it's an extremely vascular area (ie: a ton of blood vessels)..and that along with Meagan's tiny 15 pound body make it a risky surgery at this time.  He said it will need to be done, but, working with GI, let's try to do what we can to get weight on her first.  As she grows, the area will become easier to navigate.  Of course this has to be held in a delicate balance with her symptoms.  Since she obviously was already experiencing head and neck pain, and feeding difficulties, it isn't a surgery we want to put off forever. Besides the obvious, there is also a risk to her shunt with the surgery.  Meagan is so incredibly sensitive to any pressure changes, and this surgery would open up a new fluid area - thereby changing the pressure of the fluid.  There is a chance it could cause malfunction in her shunt. This is a big issue we are mulling over because it's only been in the last few months we have finally been able to find a shunt setting Meagan is not only happy with, but a setting with which she can thrive.  So there is definitely a lot to think about regarding the decompression surgery and what benefits will outweigh what risks.

Meagan after a pain episode. My sweet girl!

 After going over all the information, Dr. R said he was sending Meagan home on an apnea monitor. I was a little taken aback because I did not expect it.   He said because of the relationship her brain stem has with the Chiari, and based on her monitor numbers at the hospital, he wouldn't be comfortable with her sleeping without one. Once it was all explained to me, I completely agreed.  In hindsight I began to wonder if some of her fatigue was because she would awaken suddenly.  And I also wondered if those sudden awakenings weren't nightmares, but were in fact times her body woke up quickly to take a faster breath.  It was all pretty scary to think about! I can tell you I haven't slept much since we have been home because of this, but I know we will adapt.  She will be on the monitor until she has the surgery.

Later that night, the respiratory therapist came by and set up her monitor.  We signed all the rental agreements for the equipment and once we had our stuff packed, we were free to go.  Dr. R said we need to keep a good log of Meagan's episodes and behavior, and also how she is doing with eating and weight gain.  We will see Dr. R again on May 1st to sit down and go over all our data, the rest of her scan, and go from there with a surgery date.

Other findings on her MRI threw out a few red flags to me:

- Pituitary "something"...not sure what but there is either a small mass near it or it is severely overcrowded (which would make more sense) - I'm interested to see if this is impacting her weight gain at all
- Thickened Hypothalamus -   Also her hypothalamus looked extremely thick and she will need another scan of that particular area to see more details

 In some ways we got a lot more answers than we were hoping for.  It is a lot of information to swallow at one time and I'm looking forward to going over more of the details with her Neurologist, especially regarding the pituitary cyst.


I had a little phone conference today with Meagan's PT to run everything by her.  She was in agreement that the Chiari needs to be fixed.  She said she thinks with Meagan's extreme sensitivity to positional change, the Chiari can really be holding her back physically.  And it may explain why when we have worked her really hard at a session, she isn't just tired, but is completely miserable and upset for days afterwards, throwing back her head.  It's also a very strange limbo to be in though.  The Chiari can impact eating and weight gain - yet she needs to gain weight for the surgery.  So do we try to stuff her with what we can in hopes of gaining weight and in hopes that the Chiari surgery removes some of those roadblocks? or do we put in a g-tube so she can surely gain weight before surgery even if eating may improve afterwards? Does she need to see an Endocrinologist now due to the pituitary cyst? Will that have to be drained or removed?  Is the Hypothalamus issue why Meagan has so much trouble with her temperature? Is the Chiari pain or dizziness keeping her from wanting to tackle that next step to sit independently?

Since we have been home today Meagan has had good and bad moments.  She had one pain fit earlier. Crying. Holding her head. Pushing her head backwards over her nap nanny.  But, she has also had content moments.  She is obviously not quite herself yet 100% and something tells me we will see days like Wednesday come and go until we fix the Chiari issue.  On top of that her right eye is a bit droopy and closed and she just acts like she doesn't feel well overall.  I'm praying it's not the case, but it seems like she could be starting to get sick on top of everything else.

Feeling a little off tonight

Meagan's new sidekick at night - apnea monitor

What I've realized this week is that even a solid answer leaves questions to be asked.  Questions about what the best path is, and what all these new findings mean for Meagan now and for Meagan later.  The one thing I can take away from this whole week is that mom knows.  It has completely validated to me our decisions to walk away from doctors who choose not to listen to me or those who claimed to know Meagan better than I do.  I'm no doctor, by far.... however there is just something in us as mothers to know when something is off.  From the first dividing cell when Meagan began to grow to the current moment of snuggling her at night, I know my child better than anyone.  I feel thankful and blessed that Meagan has such a wonderful Neurosurgeon - but even more relieved that he listens to me.

We went into this week thinking we were dealing with ears, and came out with a laundry list of new brain issues, new appointments, and new plans. More risky surgeries and new problems definitely stink.  However, my goals for Meagan are long term - I want her to be as happy, comfortable and independent as possible. To get there, she's going to have to go through some hard things.  It isn't easy being Meagan sometimes. I saw it in her eyes this week. But we knew things like this could come up. Unlike my typical kids, Meagan came with a parent manual in a way.  Parents always joke about their kids coming with instructions.  Well, Meagan kind of did.   We knew of her condition, we knew the risks, the potential problems associated with it, and the probability of the unexpected. Meagan's parent manual may occasionally throw us a few curveballs we didn't read about, but we'll get through it.  A few typos along the way don't dictate who Meagan is. God does. She does. They are the author. And I won't let her forget that.

So exhausted...but still my gorgeous girl

The *Tact* of the Matter Is .....

Monday started off pretty normal for us. Up early. Kids ready and off to school.  Getting Meagan ready for PT.  Dreading the week...yet able to feed off the energy of adrenaline and a few cups of coffee.  The girls got up really well and got off to school in time.  Maura woke up in a surprisingly good mood and got herself dressed.  Meagan was sleepy, but happy and did a great job at her PT session.  I was able to get two loads of laundry put away, two more in to the washer and dryer, and was able to clean up a bit around the house.  All in all it was a great day up to the early afternoon.

I left around lunchtime to go pick up Anna from preschool and realized we were out of a few necessities for the week.  I didn't want to do a huge grocery trip that day, but, I did need to pick up a few items.  The few items we needed were silly to buy at our regular grocery store because they were so pricey and we went through them quickly (bread, almond milk, fruit, peanut butter, etc etc)  so I thought it would be a perfect opportunity to run into one of the warehouse wholesale stores we belong to and grab the items we needed in bulk.  One such store where we are members happens to be near  the school so it would be perfect timing to grab Anna, run into the store, and then return to pick up my older girls.  So off we went.

Of course as soon as we walked into the store, Anna was thirsty.  She had just come from school, so I decided to get her a drink.  I had the big warehouse cart with Meagan sleeping in her car seat in the back of the cart, and Anna and Maura sitting in the front double seat.  We pulled the cart up to the concession counter and ordered two teas.  I had quite a number of coins in my wallet, and so I decided to get rid of some of them and use them to pay.  I used my right hand to set my wallet on the counter and open my change pouch to start counting my change while my left hand stayed on the cart handle in front of Maura.

At this time, Maura had readjusted herself to pull one leg up underneath her to sit.  She still had one leg through the cart seat and the other one underneath her, comfortably sitting on one knee and watching me count change.  Out of nowhere, a store employee came up on my left side, and with her hand in the air, bluntly said to me, "You need to watch your kids.  She could fall out of that cart and hit her head."  With all my might, I ignored the brashness of her tone and replied nicely "Oh, thank you, I'm watching her, it's fine." (all the while my left hand STILL on the cart handle in front of Maura touching her side).  I turned back to count my change when the woman came closer and continued... "You really need to watch her.  She could fall out and get a concussion, and you need to watch your kids."  Again, I mustered my strength, and once again decided to chalk up her snotty tone to an overzealous concern and again turned to her.  "It's OK. My hand has been and is right here. I know how to watch my children. It's really not your business at this point. She's fine, thank you though. "

I finally received the girls' cups to get their tea and put my wallet back into my diaper bag.  I put my right hand back onto the cart to push it forward to the drink fountain when a customer... yes, a customer, came up behind me from the line.  She circled around the employee on the left side of my cart, pointed her finger at me, and with a circular motion pointing at my girls said "Honey, you are in public, and when you are in public, these (I'm assuming referring to my children, although I'd never use the term "these" to describe little kids) are our business."

At this point, I had gone from trying to be understanding to fuming inside.  I had no clue why these women approached me in this way, and even worse, continued to go on and on.  Perhaps I looked young? Inexperienced? Perhaps they couldn't believe someone could actually handle multiple children? Perhaps they felt the need to be righteous and when I politely dismissed the original comments they felt the need to perpetuate? The reason I will never know, nor understand. But I did know one thing. I was getting mad. I felt completely harassed!

I turned to the customer and the employee and said "I'm sorry, but these are my children.  They are no one's business but my own.  I can understand being concerned. But I addressed that initial concern and now you are being nosy.  I do not appreciate people nosing in to my business and dictating to me how I should be around my children - most especially when there is no problem or no danger to them." With that I continued to push my cart forward.

I really thought I had finally put it to rest and continued to the drink fountain to get my girls' tea.  The two women followed me. Literally walked by my cart and followed me to the drink area.  I could not believe it! The employee then said to me "You know, you think you know everything, but, you don't.  It's called an accident and she could fall out of that cart.  You have no clue."  Completely confused, as I looked down at Maura in front of me who was still sitting down and politely sipping on her tea, I simply said "excuse me" in an effort to walk away and continue on with my shopping.  Before I could move, the employee said "If she fell out, she could get brain damage and you would have to live with that. Then what?"  Following that, the customer stepped in front of my cart and said "Yep, exactly. You do what you want. It's going to be your fault then one day when she falls out of a cart and gets brain damage.  Then you will have to know what it's like to suffer the emotional consequences of living with a child who has a damaged brain."

Now, in hindsight, I can't help but chuckle.  My mom and dad's advice from growing up rushed back to my head - "You never know who you are speaking with in public, so it's best to know when to drop the rope and move on.".... Oh was this so true at this point!  At that moment, I went from mad, to frustrated to fuming.  How dare she say such a thing to any parent!

I was done holding my tongue.  I turned to the woman and pointing over into the back of the cart said "I'm sorry ma'am. But do you see that child sleeping there? That is my youngest of 5.  She was born with a congenital brain problem. She was born with brain damage.  Please do not lecture me on how parents of children with brain damage emotionally suffer.  I watch her try to catch up everyday and know first hand what strong and special people children who have brain damage are.  If anything, I am more cautious than the typical parent, especially situations that carry risks of head trauma.  That's my experience, what's yours?"

She stood speechless.  What were the chances she would talk to the one mom who lives the very truth of her insult.  I could tell she was taken aback by my explanation.  But she geared up again and got defensive. The employee also joined in.   After being so nasty, backing off would make them look bad I guess?  They both repeated their "brain damage" statements and with her hands thrown up in the air, the customer finally left my cart (which by the way, was moving this whole time as I tried to walk away from them!!) saying under her breath "good luck with that..."  At this same time, the employee also walked away from my cart, disappearing off to the left towards the employee break rooms.

I was completely dumbfounded by the events.  I felt attacked, harassed, and the worst part was, I had no clue what sparked such an 'outrage' at how I 'watched' my children. Everyone knows I have heard my share of comments.  I have heard my share of rude comments. Brian and I usually brush them off, gripe about them later, or vent to friends or family and move on.  However, this was ridiculous   This was completely over the top and something I never wanted another parent to feel.  I knew I needed to go up the chain and report the woman.  Unfortunately the customer got to just walk away, but I had seen the employees name and something had to be said.

I took a lap around the store before seeing a manager because I was so furious, I was on the verge of tears.  Finally I got back to the front and asked to see a manager.  I explained to him the entire story of what had happened.  I explained about the employee's inappropriate comments, how she encouraged a customer to join in, how they followed my cart, and how they continued to harass me as I walked trying to get away.  He looked very shocked.  There was zero mystery from my face that I was fuming.  He profusely apologized, took my name, number, and email and also the name of the employee.  He said he would call me with a follow up and make sure she was reprimanded for her behavior.

That day, I received a call back from the manager.  He told me he found out who it was, and spoke with her. He said she works at the store, but actually for a separate product label.  She is a rep for a company,  so he had put in a call to that particular products' buyer, since she was their employee.  Tuesday, I received a call from the regional rep for that product.  She told me she had spoken with the employee and explained everything I had said.  She said the employee did feel badly and realized she was inappropriate.  The regional rep apologized profusely on her behalf and said it should have never happened.  She told me the woman said years ago, she had a friend of a friend whose child fell out of a cart and got a concussion.  The regional rep told me if desired, the woman could call me to apologize in person.  I politely declined, only because I wanted this woman having none of my personal information, and told the rep since she had been so prompt in calling me back and apologizing, that was fine. I said that we all have friends of friends where something good or bad happens to them or their children - but I do not wander stores or public places and reprimand perfectly good parents and adults because of a bad experience I heard about one time years before.

I also told her perhaps the company could clarify for employees in what situations it is appropriate to approach a parent, and when they could be interpreted as being harassing. (For example, if a parent is there and obviously present with the child, leave them alone. Or if there is a concern, after one comment, if the parent dismisses the employee, know to walk away...etc.).  We chatted for a bit longer, she apologized a few more times, and told me she would absolutely take my suggestions and put them into an employee memo that was going out later that day. I told her that was great, and I wanted nothing more than an apology and to make sure no other mother was ever made to feel the way I felt that day.  She agreed and left her name and number if I thought of anything else and needed to contact her.  I was glad the situation was addressed and closed so quickly.  The managers and regional rep did in fact do a good job getting the information up the chain and were truly concerned about what had occurred.


By no means am I a perfect parent.  At one time, at some store, at some point, one of my kids I'm sure has stood up in a cart, or tried to sit in a funny position, as any parent can say.  But I have been there to correct them. The confusing thing about Monday was that the girls weren't doing anything wrong or dangerous. Perhaps they had a problem with Maura sitting on one of her knees, but she wasn't hanging over the cart or dangling by her waist... and more importantly, my left arm and hand were on the cart right in front of her and touching her side.  I was obviously present in the situation and to the onlooker would seem completely aware of what my children were doing.

 I was truly so taken aback by the behavior of those two women on Monday, especially talking like that in front of my children, and continuing to follow my cart. My only guess is that the employee's "story" of the child who fell, along with the fact that they were older than me, and me standing there in my workout clothes and a ponytail with multiple stair step children sparked some sort of compulsion in her to tell me how to do my job.  When I dismissed her, it probably made her angry, and gave an opening for the like-minded customer to join in by ganging up on me.  Unfortunately by doing so, it earned them a ticket on to the righteous train, instead of actually surveying the situation, listening to me, and then realizing I not need their advice nor deserve their insults and lecture.

As bad as that experience was on Monday, there is certainly a lesson to take from it. One word. Tact!  I get that people can show concern for others in public. This in and of itself is not wrong. But it is wrong when it is done rudely, with ill intent, or when the situation is not prudently assessed and the "concern" crosses the line into being nosy or even harassment.

I get it. I have seen kids hanging out of carts by their nostrils or shoelaces while parents are down the aisle talking with a friend.  I've seen the kid trying to climb out of the back of the cart while the parent is completely occupied by some other object or item in the store and doesn't even have the cart in arm's reach.  However, that's not every parent.  And even those parents, I'm sure, are not that way every time.  If there is a true concern, even if questionable, tact is always of utmost importance.  And when the parent kindly says "Thanks but no thanks" know to walk away. There is no possible situation or experience that excuses the behavior the employee and customer showed to me that day.

It is human nature to be loving and show concern for others.  God made us in his image, and therefore we care about other humans and living things. However, that care and concern does not also mean the right to harass or butt in.  It doesn't mean the right to judge.  And it doesn't mean the right to let words fly that are so awful, you can't take them back fast enough.

So to the employee and the customer, sure, I forgive you. But back off.  I tell my kids all the time, "mind your business.... you never know what someone's story might be...."  And always remember the fact of the matter is.... tact does count...."

An Old Visitor and God's Joy

"Absence makes the heart grow fonder...."  This saying crossed my mind a few weeks ago because we were into week #1 past Meagan's 3 month mark with no seizures.  I thought.. uh, no it doesn't.  We are just fine without seizure thank you very much! No fondness here at all.  Of course, I should have known, the day I was thinking about this I thought I noticed Meagan have a seizure.  It was faster than her usual partials though so I brushed it off.  I saw it happen a few more times over the next several days and then I started to notice that she would literally not be with us for a short period of time each time I saw the behavior.  Her eyes went dead, as did her mouth, and there was no reaching her. She is an extremely social little girl, so I was pretty sure she was having seizures again.  This was an old visitor I did not like to see.

So sleepy at times...

She did it a few more times and I happened to catch one on video.  After doing some of my own research and also seeking advice from my trusted Hydro parents, I was convinced Meagan had started to have absence seizures.  I wasn't overly concerned as seizures are not something new to Meagan, and I knew what they probably were.  However, being that they are fast and can happen frequently, they were being disruptive to her day and interrupting her communication or her awareness at times.  I decided to go ahead and give the Neurologist a call.

Typical Absence Seizure in Meagan. Around 22 seconds you will notice her mouth and eyes go "dead" even though I try to get her attention. Then about 12 seconds later she snaps back into reality. Her Neurologist said this is very typical of this kind of seizure.

The Neurologist told me to go ahead and send the video to her email and she would get back to me.  Within an hour, she called me back and said yes, the video showed a classic absence seizure and there was no question Meagan was having them.  She said sometimes even if one type of seizure becomes well controlled by medication, the brain still tries to find a way to seize.  When one path is blocked, sometimes it will figure out a new path and so we will see a different type of seizure show up in the child.  It made sense to me, because on a positive note, the brain re-routing itself is also how a lot of children with brain damage recover or renew certain skills.  It just stinks that seizures can work this way too.  She said instead of switching medications we would just increase Meagan's Keppra for now.  The Keppra is working well keeping her partial seizures away, so increasing it is probably a better strategy than switching medications which may allow her partials to return.  I agreed and so we got the new dose for Meagan and started her on it.  Honestly, other than an increase in her sleeping, we haven't seen any negative effects of the increased medication.  She does sleep more times during the day and for longer periods, however, when she is up, she is herself, back to being happy and doing all the things she used to do.  So we are satisfied for now.  We just hope this works and we don't see an increase in these absence seizures or have them turn in to any other type of seizure. She is still my happy girl a lot of the time, though,  and I'm thankful she's been able to cope with this new development so far without any setbacks.

On a different note, Meagan has been doing well at PT.  She is hanging in there with her therapist, Miss M, who is pushing her very hard.  She is really trying to get Meagan to be an independent sitter by 2.  She is constantly pushing Meagan to work on her head, neck, trunk and back.  Meagan is of course resistent in some cases (ie: her trunk and belly) but actually enjoys supported sitting now while she is playing.  She is nowhere near me just leaving her to sit and play...she still arches, gets tired quickly and flops over, or will start leaning to one side or the back and fall... however she is definitely getting stronger.  

One concern her OT, Miss K, had was Meagan's curving spine towards her lower back.  She said even though her supported sitting is giving her strength, her spine and lower back are still really weak.  She said the best way to increase this tone is to give her even more belly time and force her to lift her head up off the ground.  Meagan is good at holding it up if she is set upright, as in someone's lap, but she hasn't been very good at dead lifting it off the ground from a prone position.  She fights as hard as possible to not be on her belly so it literally takes her PT, OT, or me practically "sitting" on her to get her to stay there so she finally gets mad enough and lifts up her head. 

Today at PT we had some progress in that area.  Miss. M was able to hold Meagan on her belly and Meagan did lift her head up for about 3 seconds! She held it up and then "plop!" .. back down it went.  Of course then we had tears because she does not like to be on her belly or lift her head that way! But, we all know it's for her own good.. we are trying to prevent any further damage or curvature of her spine and lower back.  So for now, our focus will be to try and get Meagan to lift her head more from a laying down position to help those lower back muscles support her spine.

Meagan working hard - a 3 second lift today!

And then the tears of course. She absolutely hates this position!

Another improvement we have had is the use of her Exersaucer.  For the past several weeks, we would place her in it, pad a bunch of blankets around her to support her trunk and try to work with her on putting weight through her feet or let her "play" and practice holding her head up.  But the way she had to lean in the Exersaucer is basically the same feeling as when she would be in the prone position, so she didn't like it.  As much as we pushed blankets in with her, we could never get enough support to her upper belly for her to feel secure enough to get quality time.

Another Hydro mom emailed me one day asking if we would like their Hugga-Bebe.  I remember reading about these a while back but had just not purchased one for Meagan.  With so much other stuff we needed, this was put on the back burner.  The mom was nice enough to offer theirs to us for free, and for that I was extremely grateful! So of course I said "yes!" and it arrived in the mail a few days ago.  Since then, Meagan seems to tolerate her Exersaucer time a lot more!  We still have about a 6 minute time limit before she totally loses it, but, she is not upset the whole time.  She feels secure enough to play a little bit, and even more importantly, the Hugga-Bebe helps make this playtime more enjoyable for her. So thank you to C's mom (you can see his story here)for the wonderful addition to our therapy tools for Meagan! We are loving the use we are getting out of it already and really appreciating the positive time it is giving her to play with her different toys.

Lounging against her Hugga-Bebe in the Exersaucer

Confident enough to reach for the higher toys

We are awaiting our appointment with the new GI in a few weeks from now.  They were "nice enough" to "let us" see the new doctor... we are so thankful! (And yes I write that with heavy sarcasm...) Obviously we had regressed in Meagan self feeding small pieces of food.  She is not finishing her bottles fully still, so in the meantime, I was trying to think of new ways to let Meagan try and eat.  She did like to hold her small pieces of food, but they would go in and out, in and out...without hardly anything actually making it into her stomach.  I'm not sure why she took this turn, but, she did. But since she still shows interest food, we just scratched that off the checklist and move on to other methods.  I hesitated giving her large pieces of food before because she would try to shove the whole thing in her mouth, or couldn't hold it very well and would drop it.  Knowing she could hold food better now, I figured we would try again with large pieces of food and see what she did. I would watch her closely and felt comfortable enough knowing how to grab food out of her mouth and being trained in infant CPR. So on a whim last week I started to give Meagan very large pieces of food.  She actually does pretty well with this.  Yes, there is more dropping of her food. Yes, there is more gagging.  But nothing dangerous and I am always right with her.  She seems to enjoy holding the big piece of food like a big girl and chewing on it.  We are still working with her on biting off pieces to eat, but she is definitely trying.  She seems to enjoy listening to us so we have started to give Meagan a lot of instructions verbally and by using signs with her.  She seems to be catching on.  We will see where this leads.  She is still not taking in what she needs orally, but, if this is at least a step to let her continue to enjoy food, it's worth it.  No matter where she ends up on the GI spectrum, we want her love and interest of food to keep going, whether she needs to be supplemented or not.  It seems to be working so far and we wait anxiously to see what the long term plan with GI will be.

Meagan not too sure of the piece of ice cream cone I gave her

Last night we had Pizza.... she really enjoyed trying that....

Of course the combination of more medication and harder PT and OT sessions means a lot more sleep for Miss Meagan.  She is certainly more tired at times, but we are so pleased that we seemed to have caught her new seizures early on, and pray the meds work for these as they have started to work in recent months for her others.  We are also so thankful she is enjoying her playtime more and more.  Of course to be Meagan is a lot of hard work day in and day out... and that's ok.  But as a parent, the most important thing we want our children to feel is loved and happy. To know God and the beauty of His world.  And that is really what I am thankful for with Meagan's new progress.  Not that she is a little stronger.  Not that she is a step closer to sitting.  But that she is happy.  She smiles now when we sit her up to play.  She at least tries to reach for her toys in the Exersaucer with a whole new curiosity opened up within her.  And when she does have to work really hard, with a quick snuggle and a kiss from mommy, she smiles and seems to immediately take pride in the work she just did rather than be in an inconsolable frenzy.  We want Meagan to accomplish what we feel is the most important goal - to love life find God's joy in it.  I think so far, she's doing a pretty good job.  

Daddy's version of funny push ups... Meagan thinks it's hilarious!

 Enjoying a friend's ice skating competition

Somehow I think I got more of a kick out of this than she did.....

 Girl's gotta have a purse right?