I get why the kids' pediatricians office has us fill them out. I know that the checklist is useful in identifying developmental problems.
But that doesn't mean I look forward to it. Checking "not yet" over and over again gets depressing really, really fast.
It's the opposite of the twice a year therapy evaluations where we look at how far Mae has come and all the things she can do and is working to do. It can feel like a giant list of can'ts.
Still, when James' ASQ arrived for his six month well baby check I wasn't worried.
At least I wasn't worried until I found myself scrolling along on Facebook and started to notice that all the babies that were born after he was born here doing things that he isn't even near doing.
Then I went back to the mantle and found the envelope with that Ages and Stages Questionnaire in it and ripped it open and ran my finger down the list. Yes, yes, yes, sometimes, yes.
Then I got to gross motor skills. Yes. Sometimes. Not yet. Not yet. Not yet. Not yet.
He was already having quite a bit of tummy time but suddenly James found himself in baby boot camp.
What kid, you think ten tummy time sessions in one day is enough? Push that little chest up off the ground or roll over and we'll talk about taking a break.
After two weeks of super extra tummy times I spoke with two of our OTs, beginning the conversations with the question: "If there were a six month old that got almost all "not yets" on the ASQ do you think the doctor would hold off and see how things go, or do you think they'll order testing right away?"
After answering a few more questions on what's going on, the general consensus is that physical therapy is very likely to be ordered right away.
Thankfully we already have quite a few supports in place, so today at a Early On activity I was able to ask even more questions and when Patch has his Early On appointment next week I'll ask about setting up an eval (James also has his pediatricians' appointment next week), because he's not rolling all the way over on his own, or pushing his chest up off the floor or putting any weight on his legs (they're seriously like jelly when I try to get him to stand).
He's social and friendly and smiley and happy. He's just also kind of floppy (enough so that I've started to think of him as "Floppy Baby" instead of "Grumpy Baby.").
I'm not worried at this point. If there's one thing I've learned in the last year and a half it's that early intervention can be huge and we're certainly catching on that there may be red flags early this time.
So now to gear up for another week of appointments and days of Super Tummy Time for the tiniest member of the family.
A random picture of two flowers that I snapped on our walk today.
Today was diagnosis day. Kind of.
I went to see the ENT and he said he had narrowed what was going on with my head down to two things: it could be Meniere's Disease or it could just be the migraines.
Since the neurologist said a) yes you have migraines (which we all knew) but b) "that's not what this is" (this being the vertigo and other new symptoms) the conclusion that that leave us with is that this is Meniere's.
Which isn't all that shocking since after one week on the low sodium I felt better than I've felt... well just about ever... and when I slipped up and went over that magic 2000 mgs of salt I woke up with a pounding head, the feeling that someone was trying to put a screw driver through my ear drum and a return of the vertigo that had been gone for almost two weeks.
So next time I ask "Would it really be that bad if I just had one (or four) piece of bacon?" the answer is "Yes. Yes it would be that bad. Worse even. Don't you remember? How can you forget something like that after two weeks?!?!?!"
But it's way, way better than some of the other possibilities that were being tossed out there at the first appointment, so I can't help but feel relieved.
The doctor said he was very, very happy with the results of the low sodium diet and that unless anything changes and the hearing loss becomes more drastic they'll see me again next year to recheck my hearing then.
Now if we could just not have any other diet limitations placed on my cooking for our family that would be really, really fantastic. Between no gluten, no dairy and low sodium I'm definitely learning a new level of creativity and resourcefulness in the kitchen that I couldn't have imagined when I first began to learn how to cook after Paul and I got married.
Yesterday we were out in the yard and Sadie had just announced that it was too hot to be out there and I was trying not to roll my eyes (because the high yesterday was 66) when Maggie picked up the sprinkler and started dragging it across the yard.
She brought it to me and put it in my hand and I took it and asked her "What do you want?"
"Rain!" She said in her sweet little voice.
"It's not quite warm enough for us to put the sprinkler on yet..." I explained.
She accepted the answer and took the sprinkler back and started pulling it around the yard behind her. As she went I could hear her continuing to let us all know exactly why she had the sprinkler in her hand.
Every time we leave our house walking west I look for frogs.
Ever since the day when Maggie stared signing frog on our walk I've wondered what it was exactly that she saw.
I'd wondered if it was something in the floral shop we were walking by at the time, but while there were beautiful flowers and chicks and bunnies for Easter I didn't spot a single frog.
Today I was pushing the stroller with the kids in it to Sadie's OT session when I happened to look down and saw this:
Maggie's frogs were there all along, I just wasn't looking down low enough to spot them. I hadn't thought to look at the ground, since she was way up high in the carrier on my back that day, but apparently they caught her eye!
I wore one of my favorite dresses with a little shrug that was part of a bridesmaid dress that I wore when I was pregnant with Patch, along with the Moby wrap.
I think that my blue wrap is quite a bit more stretchy than the red one because I wrapped it the way I always wrap the red one but by the end of Mass James was much, much lower than he should have been:
Sadie wore a smocked dress from Thred Up that she picked out for herself this morning.
Maggie... wore a tutu. Which I'm pretty sure is a sign of how exhausting this week had been, because I just wasn't ready to deal with the hour of tears that getting her into any other outfit would have entailed. But at least it's not a bathing suit, right?
Patch wore a sweater and jeans. I don't really worry about finding dress pants for him since he's in the carrier for just about all of Mass and you can't even see what he's wearing. And Paul wore him today which made Mass much less of a workout for me.
And James wore a little 9-month ducky outfit. I cannot believe how big he's getting:
After Mass and lunch I took the kids and went on a walk. And as we walked I snapped pictures of some of my favorite things that we saw on our walk:
I had to include this picture because when Patch saw this statue (of the man who was the governor of Michigan during the Civil War) he started pointing, laughing hysterically and shouting "Daddy! Daddy!"
Patch is quite the character. When we're driving in the car, anytime we come to a red light he shouts "No Daddy! No!" or "Goooo-eeeee!!!!!"
So perhaps I shouldn't be surprised that this was his reaction when he came to the conclusion that Mae's foot was too close to his seat on the stroller. You can't tell, but she was laughing... hysterically:
After we walked home Paul and I took the kids to one of their favorite playgrounds:
They had a blast:
And then it was time to head home.
Once we were home I snapped this picture. James hair is kind of still looking red (it's been looking more and more golden lately).
I hope you had a blessed Divine Mercy Sunday!
Now to finish up planning the start of a new school week/year.
If you're on the blogs Facebook page you may have already seen the excitement that occurred in our front yard this afternoon.
It began when I was in the kitchen cooking dinner. Paul was talking to me when Sadie appeared in the doorway and said "Mommy, Daddy, there's a bag in our front yard!"
To be honest I thought that she was going to tell us that she'd spotted someone walking by and littering since, with the melting of the snow this last month she's noticed all the litter lining the roads lately. But then she continued:
"And a fire! And someone knocked on our door!"
I half expected to see a burning bag in front of our door as some sort of prank. Instead, when Paul opened the door, I saw this:
Only when I first saw the fire it was right next to our van...
Those would be the five bags of leaves that we'd raked up off the lawn (so far) fully engulfed in flames.
When I was a kid we had a load of alfalfa in the back of my dad's truck that got rained on before we could get it covered.
Later, when the sun came out, it started to smoke and I had a few panicked moments of thinking that the same thing had somehow happened to our leaves, and I had visions of getting some sort of gigantic ticket for recklessly leaving the leaves outside after it rained (I know, I know it sounds crazy, but our city is fond of giving out tickets.).
As I returned from the back yard with a hose, Paul tried to keep two little preschool boys who live a few houses away from getting too close to the flames, and a neighbor explained that a girl had walked down the street lighting the leave bags that were set out waiting to be picked up on fire as she went.
Another neighbor had chased after her and she'd taken off running.
Ours was the only one that really took off.
Paul took the hose and by the time the police and fire department (who were already on their way) arrived he had the fire out. The police talked to the neighbors who had seen what had happened and then were on their way:
And I spent the rest of the evening reassuring Sadie that everything was okay and that no the person who did that wasn't going to come back and start anymore fires, as she fretted and fretted over whether the person who'd started the fires had been caught.
What a week this has been. I'm thankful that there are only two hours left until a new one begins!
James' Godmother, Jacqueline, wrote a book and this week it became available on Amazon! If you haven't read Jacqueline's blog yet click right on over to Journey Narrative. She's pretty awesome.
After reading her blog for the last couple years I knew that any book that she penned would be worth reading, and so I made my order on the day the book was released and yesterday, while the kids clamored around me and climbed on me, I read the entire thing, cover to cover.
Now I absolutely I am planning to write a review, but for the time being let me just say that Jacqueline's story, Her Eyes Are Blue: The Journey of a Special Needs Mother, is a must read and needs to be on your reading list.
When Maggie saw what I was reading she came over and insisted on looking at the cover for several minutes and when I said "That's Abigail. Remember Abigail? You guys played together." she said "A-ge-ga-yo!" twice (which is huge!) and then said "girl" a few times too, while smiling at the picture.
And I just had to add that because in the midst of a kind of tough day it totally brightened my mood.
-2-
This week even had James
looking a little grumpy.
So today was pretty much one of those days where I run around, on the verge of freaking out, all day long. Or maybe it was a week where I do that.
It's the sort of week where I've had to say "I'm really sorry to be calling you again..." when I had to call one of the nurse's at our pediatrician's office, yet again.
The first two conversations were regarding an allergic reaction Sadie was having earlier this week. I called the first time to let them know she was having some sort of an allergic reaction (we think to a food, we don't know if it's just wheat or if it's another food, since this was the most severe reaction she'd had, although thank goodness it didn't affect her breathing).
I was told to call back if it happened again and a few hours later I was back on the phone as I handed her two allergy melts (I'm so thankful they're enough).
Yesterday I spent the day playing phone tag cancelling/rescheduling (and then canceling again) therapy appointments for both girls, because of the stomach bug in the house.
After getting everything worked out mid-afternoon after several phone calls the child who had been doing better for several days was suddenly unable to keep down food again... so the appointments I'd moved had to be re-canceled.
Which leads us to today...
-3-
Today everyone seemed better. Mae was super tired yesterday, but she hadn't had a fever in 24 hours.
And so today Mae went to the center for therapy. When I picked her up one of her awesome therapists told me that something a little strange had happened.
There's a dark blue tunnel that Mae had been climbing in and laying in, in the playroom and when she crawled out of it her therapist noticed that one of Mae's eyes was completely dilated and the other was tiny.
When they returned to the same size they both were totally dilated, even though they were in a bright room. She assured me that nothing had happened and I began to rack my brain trying to remember any time over the last week when Mae had hit her head.
I called Mae's doctor's office as soon as we got home and left a message with the nurses' line. They called back immediately and said they wanted to see her. By then I'd remembered that she had fallen off of a small toy box (about a foot off the ground) earlier this week, had cried for about a minute and had had a small bruise over her right eye.
That, combined with the fact that she'd been quiet and had been throwing up (which I'd just thought was the stomach virus, but was now worried was a concussion) meant I gathered up all four kids, loaded them back into the van and drove across town to pick up Paul from work (thankfully less than an hour early since he'd already arranged to take the kids during the ENG appointment).
Mae's doctor's office was awesome. They took us to an exam room as soon as we got there and a medical student came in and got all the details of what had happened and then returned with the doctor (one I'd never met before) who was amazing with Mae.
The doctor explained that some people have slightly differently sized pupils and that sometimes the difference in size is more dramatic when the person is going from dark to light.
When we got out of the appointment I had 25 minutes to get across town to my ENT's office...
-4-
I made it to the ENT's office with a few minutes to spare before the ENG was scheduled to start.
After getting hooked up to a bunch of electrodes the test started. The first part of the test involved following a little red dot on a screen with my eyes. No problem there.
Part two involved sudden changes of position and being tilted backwards. Before the low sodium diet, when the doctor had done the exact same thing, the room had spun. This time it didn't bother me at all.
The last part of the test involved having cool and then hot air blown into each ear while my eyes were closed. No big deal, right?
Nothing had happened during the other parts of the test and I couldn't imagine that a little bit of air would really do anything too dramatic if being tipped one way and another hand't done anything.
Let me tell you what that was like.
On the left ear it was kind of like being on the teacups at Disney World. It wasn't that bad.
The right side was a different story.
It reminded me of Railroad Days when I was a kid and I convinced my mom to let me go on the Zipper when I was feeling particularly brave.
For those of you who don't remember the Zipper it was a carnival ride that goes up and down along a track that looks kind of like a zipper, while the individual car also spin around rapidly. Like this:
So that was kind of surprising.
Now I just need to wait until next week to get the results.
-5-
I'm pulling together our schedule for second grade and today Sadie picked out one book to use in one of her elective classes.
The cooking craze is still in full force and when Sadie saw this book she was so excited. She spent a major portion of her day sitting and going over each page over and over again:
Her book mark is stuck between the picture and recipe for chocolate mint cookies.
Her goal is to make every single recipe in the book.
I hope they're all as good as they look.
-6-
Sadie has this week off from school, but she's been sitting down each day for about three hours on her own and doing her own little art projects. The first day it was drawing flowers from her How to Draw Flowers book.
Then it was a day of drawing princesses:
And finally it was a tea pot, which of course, led to a tea party the next day:
-7-
Tonight after running upstairs to do something I was greeted on my way back down the stairs by the sound of James laughing hysterically while Sadie said in a serious voice: "Well, it's not a laughing matter!"
When I asked her what they were talking about she said: "I was just doing a little speech therapy with him. I'm trying to teach him how to say 'let.' Let, James, l-l-let."
Maybe it's a good thing we had a couple days off of therapy this week!
The blog has been silent because we're just coming out of the tunnel of a stomach bug that has had me in survival mode for the last few days. The three big kids all had it for several days, but thankfully while James seemed a bit warm he seems to have missed the brunt of the virus.
I will spare you most of the details but I can say that having one sick child who was standing up get sick above a sick child who was laying on the floor was pretty much the low point of the week.
Today we're settling back into the swing of things.
I'm still waiting to hear back from the neurologist about the last MRI, and on a really positive note I haven't had a migraine since I started the 400 mg a day of magnesium, so I'm cautiously optimistic that it will hopefully at least cut back on the headaches.
And Friday is the ENG test. After being told the point of the test is to bring on the vertigo and that there's apparently a fair chance it's going to make me sick, it sounds not so fun. But it will be nice to have it done and out of the way.
Which brings me to the low salt diet.
I kind of hate it.
Except.... Sigh... except that the vertigo has dramatically decreased in the last couple of days. And I feel kind of great overall.
I kind of have mixed feelings about this, mostly because of my not totally healthy love of all things salty (as evidenced by the fact that I lost 10 lbs in the first 3 days of this diet...). I would love to be able to eat all the salt I want and feel great too. Alas. That looks like it's not to be.
Feeling really good is worth it though. And I'm sure that as with dairy and sugar and the other elimination diets I've done for allergies, the oh-my-goodness-I-can't-think-of-anything-other-than-salt will subside soon too.
I'm having good luck with various cooking experiments... I just miss salt. And I'm struggling with the balance of getting enough calories to not have my milk supply tank (which has happened twice now) while not exceeding the salt limit.
It is definitely an exercise in self control.
Now hopefully my brain can begin to wake up from survival mode and I can start to think about other (more blog-worthy) things again!
For parents of kids with certain special needs, Mass on Easter Sunday can be a special kind of challenge that may have them counting the minutes until they hear the closing blessing. The crowds and the incense and the length of the Mass can be particularly overwhelming for those with sensory issues.
When we go to Mass I never know what to expect. Will we make it to the closing blessing? Will we even make it long enough to receive the Eucharist? Or will we be hurrying a hysterically inconsolable child out during the homily?
The last happens rarely, and Mae genuinely seems excited to be at Mass most of the time, with her excited squeals being the main reason we hang out in the vestibule, behind the glass doors, only going forward for communion.
The vestibule was crowded by the time Mass started on Easter morning. There were no seats left inside the Church and so as more people filed in it began to fill up.
Mae stays in her stroller because we've learned she's more comfortable and likely to be quiet in it, and I maneuvered her back and forth to try to get her a clear view through the glass doors as more and more people stood in front of her and to try to keep her away from offers of foods that she will be very sick if she even touches. Finally I sank down next to her and held her hand as she giggled and clutched her mermaid doll in an embrace.
As a little boy walked in, who was maybe ten years old, I saw Mae's eyes fall on him and follow him as he walked across the room. She doesn't usually pay much attention to older kids. She loves babies and toddlers. But this boy captured her attention and by the time he was halfway past us she had a giant smile on her face.
It was clear immediately that he also faced his own special challenges and he noticed Maggie right away and smiled back at her. When he got too tired to stand any longer he came and sat on the ground next to us. And when his mom arrived we smiled at each other, an understanding smile, before turning her attention back to Mass.
Then my attention was captured by Maggie reaching over repeatedly and trying to poke the woman standing next to us with her mermaid. I was kind of surprised. This wasn't typical Mae behavior. She doesn't usually reach out to or bother people around us at all.
As I attempted to contain the mermaid doll, the woman, who Maggie was obviously drawn to, whispered to me that it was alright several times as she tended her toddler. I noticed that she was watching Maggie with a smile on her face and finally she leaned over and whispered: "My nine year old daughter loved mermaids too. She wouldn't talk and she wouldn't interact with other kids, but she loved mermaids. And so when she went to swim lessons it was just so freeing, and then she would interact with people when she was in the water."
I smiled and whispered back, "she loves mermaids and the water too... so much..." and wondered if perhaps I'd just met another mom of another little mermaid loving girl on the spectrum who'd wanted to offer a little encouragement to someone closer to the beginning of a similar journey.
We made it all the way to the final blessing this Easter Sunday. And I felt greatly blessed that we were able to receive this week, but I also felt that this particular Mass had been a sort of gift to see other families at other places in their own journeys, in a setting outside of waiting rooms.
Sadie and I spent Saturday night cleaning the house and getting ready for Easter morning. She dyed eggs while James and I cheered her on:
And then I tucked her into bed and put the baskets together. I'd gotten each of the kids one toy and one book (there were a few little gifts from other family members that were put out too).
Sadie got a pair of pink shoes she'd desperately wanted for months and a new Sofia the First Reader
. Maggie got a new mermaid water baby and a My First Colors Board Book
(she loves labeling picture books and this has lots of brightly colored pictures). Patch got a little fire truck with a dog in it and a My First Words Board Book
for us to use during the little speech therapy sessions I'm supposed to be doing with him in between his actual sessions. And James got a few teethers and a Peekaboo Sophie! board book.
And then, finally (at least that's how it felt to Sadie), it was Easter morning.
Maggie and I had a little disagreement about clothing choices while getting ready. First she tried to convince me to let her wear her bathing suit to Mass. I brought up an armload of her favorite dresses and she looked at them and ran across the room and picked up a piece of bubble wrap I'd left out, because I knew she'd like playing with it, and she held it up like it was a dress and then looked at me to see if that was an acceptable choice.
After I made it clear that wasn't going to pass muster she put on a little rain jacket and came over for me to button it up.
We finally compromised and I let her have bare feet (a new thing for the girl who used to obsess over shoes) and let her wear her rain coat as long as it had a dress under it.
And for once we actually made it out the door on time.
Poor Sadie had a tough morning.
Apparently there was some cross contamination in the kitchen and she had a horrible allergic reaction to something (we're guessing wheat since it's the only food allergy that we know of that she has and because I've been making Paul sandwiches with wheat bread to take to work).
When she was getting dressed I noticed that she had hives the size of quarters on her shoulder and I quickly gave her her allergy medication... but the result was that she fell asleep pretty much as soon as we got to Mass.
Even though we can hear Mass through the speakers, she always listens with one of the little
personal listening devices.
We almost had a double wheat day when a toddler tried to feed Maggie crackers twice.
Thankfully no crackers actually passed Mae's lips, so our lives weren't turned entirely upside down.
Patch got good use out of at least some of his four favorite phrases (which are: "help me!" "no!" "get down!" and "all done!"). He did much better once Paul took over. Mostly.
We made it all the way through the final blessing with no meltdowns (and that's kind of big on a day like Easter when the Church is so incredibly full):
After lunch it was time to hide the eggs for the egg hunt.
Last year Mae was all about finding eggs. This year she was all about one particular egg (that looked like a monkey).
James watched from the Moby. Grumpily.
Maggie shows me her favorite egg!
And since I actually got a picture of today's outfit I thought I'd throw it in her for What I Wore Sunday. Today I wore one of my favorite dresses and shoes I've had since before Maggie was born:
I hope you had a blessed Holy Week and a Happy Easter!
Then I went back to the mantle and found the envelope with that Ages and Stages Questionnaire in it and ripped it open and ran my finger down the list. Yes, yes, yes, sometimes, yes. 
, is a must read and needs to be on your reading list.
. Maggie got a new mermaid water baby and a 
(she loves labeling picture books and this has lots of brightly colored pictures). Patch got a little fire truck with a dog in it and a 
for us to use during the little speech therapy sessions I'm supposed to be doing with him in between his actual sessions. And James got a few teethers and a 
board book.
