Maggie's MRI

I didn't realize until a friend emailed me last night that I'd completely forgotten to update everyone on Maggie's big day getting an MRI!  First off, thank you to everyone who prayed for us!

The day started bright and early when we headed to the hospital an hour before the sun was up and met with one of her therapists after checking in downstairs.  We made our way together up to the Children's Outpatient Surgery section of the hospital and there were some tears during the weigh in and taking of her measurements and attempted taking of her vitals. Maggie's fear of weighting rooms and check ins at doctors offices' is almost a phobia.... and so those times are never fun.

Then we were sent down to a bed, which she was supposed to stay in... however... there was one major obstacle.  This particular entire section of the hospital had been decorated to look like a fish tank, complete with sea life scenes across the nurses' station and linoleum tiled ponds, full of fish, on the floor.

It was the linoleum tile ponds that gave us the most trouble.

It may be hard to imagine how big of a deal this was, but basically a giant room decorated like a fish tank is like Disney World to Maggie.  All she wanted to do was go four feet from her bed, crouch down quietly at the edge of the linoleum pond, which was far away from everything and everyone else and sit her little mermaid doll, and teeny tiny plastic sand castle, in the middle of it and let them swim.

When the nurse explained that she needed to be in her little fabric lined cubicle so that she didn't violate any other patients privacy, she seemed to feel that I'd taken her to Disney World and told her she couldn't touch anything or go on any of the rides and needed to sit in a hospital bed instead.

So she was pretty sad as we corralled our whirlwind into her little space and pointed out that the floor was blue there too.  We sang songs, and tried to interest her in what was on TV and waited.

And Maggie calmed down and sat on the bed and on my lap and played inside our little space, if not happily at least quietly.  Since we were still in the hospital it was a victory.

The nurse came in and it was clear that she was having a bit of a bad day.  She looked at Maggie and sighed and said "I don't know how we're going to do this with her. I don't think we'll be able to.  We're never going to be able to get an IV in her.  There's no way." And she walked off, and came back and said the same thing a second time, and left again, and returned to say it a third time, in case we hadn't heard her the previous two times, and added that she was sending the anesthesiologist in the have A Talk with me about what was going to have to happen.

 It was around this time that Maggie rolled off the bed and curled up in my lap and started to sob, and I may have had a hard time suppressing the swear words in my head, which included the repeated phrase "Really, is this this unusual at this enormous teaching hospital?  Just do your job."

You see we've been to the hospital before and had blood draws before and it wasn't a big deal. I've been repeatedly told that if she had a hard time they'd just call someone from the PICU to come help, but they've never had to.  Of course, we'd also never had a nurse announce in front of her how impossible and difficult it was going to be, so that did add a degree of difficulty.

In retrospect I should have said "You know she understands EVERYTHING you're saying" but I was so stunned at the way she was saying what she was saying that I couldn't really find a response. I kept telling myself she as having a bad day, but her bad day was seriously affecting my now terrified five year old.

Then the anesthesiologist arrived and saved the day.   He swept and in and explained that he works in critical care pediatrics and Maggie glanced over at him as he began to talk to her.  She sat up.  He asked if he could listen to her heartbeat and said "can we listen to your heartbeat here?" and put the stethoscope on her knee.  She reached out and took the end of the stethoscope and put it over her heart.  Then they listened to her doll's heart.

Within a few minutes he'd completely won her over and was helping her hold the ear pieces for the stethoscope up to her tiny Molly dolls ears so Molly could listen to Maggie's heart too.

As he left the room he said "I'll have to tell Nurse R that she likes me the best." with a smile, after commenting several times on how charming she was (and by now she was all smiles and giggles).

We decided that Versed Syrup, which Maggie takes when she has teeth cleanings, would be the best way to go about getting the IV started, because he wanted to make the whole process as easy for her as possible.  He ordered a special flavored mixture from the pharmacy, since all the syrup they had was unflavored (and apparently very strong tasting) and when it came Maggie easily drank it and sat on my lap as she became more and more sleepy.

I lifted her up in the bed and held her hand while they placed the IV and then wrapped it and then found a splint for it, since even in her drowsy state she was still very interested in what was taped to her arm.

We walked down the radiology and I got to be by her head while she fell asleep and then she was whisked into the MRI while I said goodbye to her therapist and thanked her for talking over three hours out of her morning to be there, and then I went to wait in the waiting room.

Maggie woke up when we were back upstairs, and she was excited to see that they'd brought her a red popsicle.  Her nurse was in a much better mood.

After gobbling down the popsicles we were whisked out to the car in a wheel chair (since she wouldn't sit in it by herself) and a few minutes later I was trying to convince her that she really couldn't walk, much less run (the Versed Syrup takes a bit to wear off), as she attempted to climb out of my arms and zoom around the house.

It was a huge relief when the meds finally wore off and I didn't have to worry about her not being able to walk any longer.

All in all, apart from that one little bump of grumpiness in the road, it went better than we really could have hoped. And now we wait for the end of the month for her next neurology appointment, although I have a feeling we won't have any bad news since they haven't called us and the results must already be in!

Thank you again for all the prayers for her big trip to get an MRI.  We definitely appreciated them!

The Feast of All Saints 2015

We celebrated the feast of All Saint's with some last minute costume creations. 

I'd been telling myself for most of October that I'd have time to throw something together, but on Halloween I had a sudden burst of energy and sewed a costume for Patch, discovered that the one I'd planned on James wearing didn't fit, and sewed a costume for him to wear as well.  

Here's Patch trying on his costume moments after it came off the sewing machine,  I had nothing that fit him in the Saint Costume Box and so it was made from scratch:

There was cake, because nothing convince my littlest ones that a feast day is important like cake:

And here they are as a group who just won't stay together for even two seconds to get their picture taken.  Despite Sadie's best efforts.  Can you guess who's who?  (I'll tell you below the picture)

Maggie was dressed as Saint Therese. Patch was Pope Saint John Paul II, Sadie was Saint Bernadette and James went as Saint Francis.

James, as shown through all the pictures, was not a fan of his costume.

Lily was the Wolf from the story of Saint Francis and the Wolf:

Okay, so it was more or less a photography fail, but they had so much fun dressing up as some of their favorite saints.  I do believe that it helps the stories that we've read and the saints who's intercession we've asked for come alive in their minds!

The Newest Member of the Wollner Clan

I have All Saint's costumes to show you, because I managed to complete my last minute scramble of sewing in the kitchen while watching the kids play through the door, but I think they can wait until tomorrow, because today I want to share with you the newest member of our family and the ways in which she's already amazing us, even though she's only been here for a few days.

This is Lily:

She's an eight week old Great Pyrenees puppy and on Halloween, we skipped trick or treating (it was raining and cold) and we drove north for a couple of hours with all the kids in the car, for a surprise.

It wasn't a surprise for Sadie, who knew why we were driving, or Maggie, who I'd been prepping for the surprise, but for Patch, who's birthday is next week and who is entirely puppy crazy, it was a complete surprise:

For a long time we've been on a wait list for a service dog for Maggie.  A very long time.  We first began to application process in June of 2014.  Paul contacted them last month and was told that they wouldn't even begin matching Maggie with a dog to begin training for another year.  So we're going to look into other places and fund raising.

But while we were waiting we saw a picture of Lily, and fell in love.  So we drove up to a little farm with a few dogs that watch their animals and we met the parents of the puppies and Paul picked out Lily because she was the most interested in him when he came into the barn and she had the cutest little face.

I was't sure what puppy life with a Great Pyrenees would be like.  I grew up in a house that always had dogs, an Australian Shepherd, a black lab, a pit bull/lab mix, but we'd done a lot of research on Great Pyrenees before going to get her and I was a little nervous after reading about how strong willed and independent they can be.

Lily immediately put me at ease, as I comforted the little ball of nerves in the car.  By the time we were halfway home she'd decided this whole car thing wasn't so bad.

The first night here she slept far more soundly than either of the boys.  I kept waking up and expecting to hear her barking or whining, but instead (after proving that she could jump in and out of the "large dog" pen we'd gotten for her) she settled into her bed and slept.

The best part about yesterday, however, was watching how her relationship with each of the kids had already developed, and how different those relationships were.

I'll start with James.

Lily seems to think that James is a puppy.  He crawls everywhere.  And she wants to be with him all of the time.  She trails him around the house. When he crawls she walks right next to him.  When he sits, she'd sit with her back against his. When he naps, she naps:

I was helping Maggie with something and came back to find them like this.

James isn't entirely sure what to think of her.  He's not a huge fan of being kissed repeatedly by a puppy and she loves kissing him.  Still, they already seem to be thick as thieves.

Okay, one sneak preview of St. Francis and the Wolf.

Next is Patch.

Lily and Patch are kind of hilarious together.  She sits next to him and he says "sit, stay" over and over again, which he must have learned somewhere although I have no idea where, and he beams with pride because he finally has a puppy.

Then there's Maggie.

I wasn't sure how Maggie would react to the puppy.  When we got into the house she came over and touched Lily's nose and said nose, and then touched her ears and said ear.

By yesterday morning she and Lily were inseparable.  Lily would lay next to Maggie and Maggie would put her mermaid dolls on top of Lily so they were "riding" her.

Then I noticed that Lily kept finding Maggie's toys and carrying them around the house.  Maggie didn't mind.  She always wants someone to play mermaids and Lily was only picking up mermaids.  She definitely recognized which ones smelled like Maggie.

Yesterday afternoon Maggie was having a tough time.  She was upset and started to cry.  And just like that Lily was there.  She picked up her puppy blanket, which I'd wrapped her when we brought her home, and she shook her head and yipped, trying to get Maggie's attention.  Then she laid down next to Maggie and Maggie began to pet her and suddenly all was right in the world.  Just like that.

Sadie is the one that the puppy loves to run with.  Sadie's constantly moving and the moment Sadie stands up Lily's ears prick forward and she stands up too.  When Sadie moves, it's almost always quickly, like a whirlwind moving through the house, and Lily is right there beside her, a ball of excitement.

So far when I'm with Lily she's calm.

Unless we're outside playing and then she likes to run around the yard next to me.  The moment I'd stop moving she would run straight towards me and lay down at my feet and look up and wait to see what we were going to do next.

We're going to take her to puppy classes and obedience classes and I've noticed that some of the obedience schools nearby offer service dog courses, so I'm hoping she can take those as well.  I'm not sure she'll ever be an actual "service dog" (I doubt it) but I do think she's going to be a great addition to the family and a great comfort to Maggie when she's upset.

And having a giant dog who's protective of the family in the house won't hurt either.

So meet Lily, the newest member of the family!  We're so excited that she's here!

I have no idea how she managed to fall asleep between all the kids while they were playing.  But she did.
And I snapped this moments later.

Autumn, Appointments and Editing

This week is a whirl of appointments and phone calls that I need to make that I'm impatient to be done with.  Last week was basically the same thing, and I went to my very first IEP meeting (for Patch) so that he can transition into speech next month when he turns three, although he's having a language explosion quite suddenly and the speech therapists aren't sure he'll even need it much longer.

This is the best swing ever made.  The big swing and little swing are attached so when I swing it swings Patch.  Or preferably when Sadie swings, so I can push James on the other swing!

The big appointment, that I'm going to ask for prayers for, is on Wednesday morning.  The neurologist wanted an MRI done to make sure nothing else is going on with Maggie, but of course that involves her being sedated, since there's no way she could hold still for any length of time, much less that much time, and so we're heading in to the hospital that morning, along with one of her therapists who's going to come along to help.

Her rain jacket is her fashion accessory at the moment.  Inside, outside, anytime.

James has his one year well baby check, which makes me nervous, because every time I think he's doing really, really well with his PT, he gets checked out and I'm assured he does still very much have hypotonia and hyperflexibility, even though he's come such a long way in the last two months. I mean he's cruising along the couch now, which is huge since he still could barely sit up in a high chair two months ago.

He still likes frowning at me when he sees my camera though.  I suspect because he's plotting ways to steal it and chew on the case.

In other appointment related news, I got a phone call from the genetic counseling office (also because the neurologist wants to eliminate other possible things going on with Mae) and took their next available appointment... at the end of April 2016.  At least that isn't on the schedule for this week.

But none of this is the reason I haven't been blogging lately.  The reason for that is that I'm in the proofreading the first draft stage of the book, and that's where all my writing energy has been directed this past week.

And I'm also turning my mind towards trying to find an agent for the book, and trying not to panic about query letters because apparently writing a one page query letter is far, far more intimidating (for me) than writing an entire additional book.

The other thing distracting me from posting is October.  It is my favorite month of the year in Michigan (with September coming in a close second).  So I'll close this post with a few of my obligatory yearly "It's autumn in Michigan" photos that I've snapped this week as we begin to feel winter rapidly approaching and I'm enjoying the swirling leaves before they're buried under snow (I mean neatly raked into piles and bagged...)!

If I keep up the current editing pace of one chapter a day I should be done in a little over two weeks and I'm hoping then I have a little more energy for things non-book related!

As long as these leaves and the crisp cool air stops distracting me!

My Rules for Navigating Social Media and the Blog

When I first began blogging Sadie was six months old.  I hadn't really read many (or any) blogs at that point, but I somehow stumbled upon the Blogger website and decided that I could carve out my own little corner of the web where our far flung relatives who lived across the country could check in if they wanted and watch as Sadie sprouted up like a little bean stalk.

So I started typing, just about every day on a bright pink background on a blog called Sadie's Mom's Blog (that's long since been absorbed into this blog).

Over the years the focus of the blog has changed quite a few times, but one question that I've asked myself all along has been how much to put out there (here) for the world (in this case anyone who stumbled upon this blog) to see.

The conclusion I've come to is personal.  I think that it nearly always is, or should be.  There isn't a template that can tell most of us what's the right level of openness when blogging.  It's something we have to figure out for ourselves.

Over the years I've developed my own set of rules, that I've used to guide my writing and to help me decide what I'm willing to share in this space.  And tonight, if James stays asleep for another half hour and lets Mommy blog, I'll share them.

Rule #1: I can share embarrassing stories about myself, no problem.  But embarrassing stories about my family?  Not so much.  I'm the one who signed up for this, after all.  I can decide what my level of comfort is.  And I can ask Paul if he's comfortable with me writing about something (I can't recall him ever saying no).  But if it's something that I think will be even marginally embarrassing for him or the kids, I don't ask.  Because it's my blog.

There are moments, at least once a month, where I find myself thinking "If I was an anonymous blogger who didn't use any names or pictures this would be hilariously funny."

I'm not though.  That's part of the trade off.  And so far I haven't regretted the level of openness that has existed here for the past seven years.

Rule #2: If  I can't sign my name to it I shouldn't be putting it out there.  

Having my name attached to the blog and to my comments when I'm elsewhere on the internet makes me feel a certain sense of accountability when I'm writing.  It usually helps me cut back on the snarkiness that I sometimes find creeping up on me.

More than once I've typed something up and then paused to ask myself if what I'd written was kind or even necessary.  Did the person I was addressing really need to know that I disagreed with what they said?  If it was in response to something that I'd written did I not feel that the initial post could stand on its own?  Did it really need to be added to?  Am I going to start wondering if I need to go to confession if I hit enter to post something unkind and reactionary?

This isn't always easy, and I've failed at it many times (not the signing my name part, but the kindness part) but it's something I've made a point of asking myself more often in the past year.

This also carries over to social media in another way.  All of my accounts are public and I don't post anything that I wouldn't want the entire world seeing.  I think that the idea of social media accounts being private can get people in to trouble and so I find it's just safer to assume that everyone can see everything, which makes me think a little longer about what I'm sharing with the world than I otherwise might.

Rule #3: Babies get more face time on the blog.

Over the years, if you've been around, you may have noticed that the smallest member of the family is very likely going to get a lot of blog play time.

The reason for this is two fold.  First it's because this blog has effectively been my baby book for all of my babies.  And they grow so fast and I am still posting for our friends and family across the country.

There's another reason though.  As kids get bigger they need more privacy.  I can share cute stories about James and Patch all day long and even years down the road those stories won't be embarrassing.  As the kids get bigger I share moments that they are okay with me sharing, and I try to make sure that those moments are instances that respect their privacy and won't be embarrassing down the road.

 That does meant that it's impossible to really get the full picture of our lives.  You likely will miss out on the hardest days and moments and meltdowns, and on some of the biggest victories, because many of those moments and challenges are intensely private and just shouldn't be commemorated for the world to see.

If my kids are going to be embarrassed by me blogging I want it to be because they're embarrassed by me being me (like how a certain child was obviously embarrassed at the imagined idea of me leaving the house in my Mickey Mouse pajama bottoms when I put them on at 5 pm the other day because I was ready for it to be my bedtime), not by me telling stories that they didn't want the world knowing about.

These are the main standards that I take into consideration when I'm writing a post.  There are others too that come up now and then but those are the main guideposts that I use to decide on whether or not I should really write about the topic that's just popped into my head, or the funny thing that happened when we were out and about with our merry band of kids.    

Obviously this list isn't for everyone and I think it lies somewhere in the middle of what people feel comfortable sharing.  Some feel far more comfortable sharing more than I do here (and I love many blogs in this category) and others use made up names and don't share pictures at all (and I have favorites in this category as well), so the decision I think is a personal one where each person who does have their own little corner of the internet figures out what they're comfortable with and what works for them and for their families and friends.

So for all you bloggers and users of social media do you have any rules for how much you put out there and do you have any rules you'd like to share that you've found help you navigate this world of being able to share your thoughts and photos at the press of a button?

James' Big Day

James turned one this week, and while we celebrated I made a note to myself to make sure to cancel the majority of our appointments on birthdays from now on, because while we had time for a little party, we were pretty overscheduled, and I just hadn't realized that his birthday fell on one of those overscheduled days until it was already here.  Patch had speech at 8 and Maggie had ABA at 9 and then OT at 2 and Sadie had her first Little Flowers meeting at 4:30, which meant that all in all, our day was pretty booked.  

Still, James had a lot of fun.  He pretty much tagged along and had a blast doing all the things Patch was doing in Speech.  And while Mae was at therapy I set up for his big party:

James loves all things related to cars and Patch was pretty impressed too:

Sadie and I made the cake and cupcakes:

 We had our little party at lunch time.  Sadie set the table:

Paul brought in lunch:

And we looked over and saw that amid all the excitement, the birthday boy had fallen asleep.

Maggie wasn't about to have him miss his party.  She was really upset about it.  So after six attempts she finally woke him up.  He wasn't thrilled.  Even if waking up meant cupcakes:

Presents, however, were worth waking up for.

Patch was on hand to explain how all the toys worked.  Especially the little steering wheel:

After Little Flowers it was time for a birthday dinner:

And cake:

James was a big fan of the cake:

And finally his big day was over and it was time for bed!  Happy Birthday to our big one year old.  This year has gone by far too quickly!