Have bit off more than I can chew

My angel friend Kat asked me today if June was getting into things these days and I showed her a picture that pretty much sums it up:

I know you have one of these tupperware drawers.

This is good and bad as one with a child would understand.  On one hand you are rejoicing because your child is becoming more mobile and more independent, and on the other hand you are complaining that you have to follow your child around and lock doors and drawers you've never locked before, move plants, antiques and picture frames high, out of reach, buy childproofing devices you swore you'd never purchase because there would be no need for them, because, after all, you are a fair and firm disciplinarian. 

Needless to say I am not raising a typical child.  One jaunt to the beach and you'd understand that this little girl thoroughly enjoys chewing on sand and other leafy objects.  She is stimulated in a way only my therapists understand.  She doesn't make that icky face that a normal child makes after she's had a few mouthfuls, she makes that obsessed crazy face that says, "Give me more and I'll take any punishment".  Same with leaves, dirt, anything gross or gritty, really.  But her favorite is books.  She can destroy a book by eating it in about 5 seconds.  We only have one perfect board book left.

Iva June starts school on January 3.  I can't believe it, but I am actually putting my little baby who doesn't even walk yet on a bus, sending her off to school and hoping that she'll come back a little more knowledgeable, a little more social and a lot less obsessive.  I can't lie.  I'm entrusting her to the Norfolk Public Special Needs System, because I know they'll do a better job than me AND so I can have a breather for three hours a day.  Things are getting more and more difficult.  She is getting heavier and bath times alone are like catching a squirming, drowning 30 pound slimy fish who sometimes bites.  Meal times, if done correctly and therapeutically take an hour each.  She's supposed to wear glasses at least an hour a day, but since she eats those, I have to follow her around for an hour.  She needs to wear a hat (that she also eats) because she is boring a hole into the back of her head because of all the upside-down spinning she does.  She still poops four times a day and, throws up, on occasion.  There are at least 105 other therapies or "good ideas" that I'm supposed to be doing daily, but unless I hire a maid and a cook, that won't happen...and since we are also in our first, full-blown financial crisis as a family, I am officially wondering just what God is thinking.

So He told me and I'm banking on it:
"My God will supply all my needs according to His glorious riches in Christ Jesus." Phil. 4:19

Seeds and Guts

Favorite spot for both

It's 5:00 am and I can't sleep.  Maybe it's the snoring of the breathing child next to me, held tightly in my husband's arms, or the constant ongoing, swirling of thoughts all clashing in my brain, or maybe the allergies because I can't take all-powerful allegra and flonase right now, although I sneak it every once in a while.  I've been wondering...how are we going to fit another human being in this bed at night, in this house?  Will June ever be able to make it through the night without being awakened by her apnea?  These are questions only God knows the answer to, so I will wait and continue to take one day at a time while my belly makes plans and gets larger by the hour.

 

Designing

Today was a fun family Saturday.  The kind where we were supposed to do something akin to drudgery, but it turns out that the event got postponed, so we were able to, for once this week, be all under the same roof and be all harvesty about it.  After a leisurely breakfast of scones (thanks to my friend Bernadette) and eggs, and then a little cleaning and tidying, the boys set off to design their jack-o-lanterns.  You would have thought we were going to Busch Gardens by the shriek that came out of James.  

Ben gets ideas from the book, Play With Your Food

Guts were removed. Slime was explored.  We even found a pumpkin seed trying to spring new life inside the pumpkin already.  How very ironic.  Seeds were removed from pulp and pulp was removed from seeds, and then, attempted seed toasting occurred.  All in all, everyone was happy with their product.

And now it was off to the church Harvest Festival where James refused to wear his dragon costume, so he had to be a non-scary skeleton (thanks to Marmelade) instead.  Can you wear a skeleton costume in church? I wasn't so sure. I don't have a picture of it. 

The defeated dragon wishing he were out of his costume.

June ready for "vall vestible" as James has been calling it.

Straw slurping and busy hands

Today was a breakthrough.  June is 27 months and we have been working on transitioning from bottle to cup for at least a year.  In the process, there have been many tears, shaking of the head, spilled milk, frustration and GAS.  Yes, gas.  June writhes, wriggles, squirms and contorts her body in strange positions until all gas is relieved after every drink.  No amount of prevacid helps.  I will say Dr Brown's bottles have miraculously improved her condition, but since we moved on to a soft spout sippy, she seems to be in even more turmoil.  This morning we tried to feed her milk in 4 different cups to try to alleviate gas...with no luck.  I was practically crying with her this morning and at the same time, calling out to God that we need help!

This afternoon I pulled out the straw cup just one more time to give it a try.  To my disbelief, she actually pulled milk out of the straw, looked up at me and smiled (with all milk falling out of her mouth), but she did it! And she was so proud of herself.  We clapped every time she took a drag and she giggled like she was putting on a show.

Happy girl

(ignore the trucks)

 The second blessing we received was in the form of a box.  A textured carousel busy box to be precise (more info).  At a neurological visit one day, I thumbed through an Enabling Devices magazine and came across this toy and just knew June would LOVE it.  I knew it was too expensive to take a chance on, so I mentioned it to Early Intervention and they agreed to buy it for us!  It came today with June's therapist and she has been overjoyed to say the least.  James was equally thrilled.  Take a peak and ignore the whining:

You can't see it very well, but it is a six sided textured box, and each easy-to-press panel produces a different sound or motion including, music, lights, vibrating, bubble popping and horn blowing (my obvious least favorite). I know you want one now.  Kids and adults of all ages are attracted to it!

Tidal pool

A few nights ago we managed to get it together to get down to the beach-finally.  It's summer time and we live just 30 minutes from the actual oceanfront, yet we truly under-utilize this God-given haven.  So, I packed the many bags, numerous towels, changes of clothes, sunscreens, diapers, cooler full of dinner, water jugs, buckets and shovels, balls and sand toys.  Good thing Rich's mother gave us a handy beach cart.  We would effortlessly glide across the petal soft sand to our resort spot on the shore.... But in all seriousness folks, it felt like we were the Israelites crossing the blazing hot Sinai Desert.  How does anyone do that for 40 years?  I was carrying June and had to stop every ten steps.  And those women probably had at least one child on the back, another tied across her bosom, a water jug on her head, and one of those stick things across her shoulders with two satchels of belongings balancing the whole gizmo.  I'm glad I was born in the last 300 years. 

So the whole way there, I was praying hard.  We've done this before and it has just been difficult with Iva June.  The greatest struggle is her perpetual munching of sand...and I mean, she actually likes the grittiness in her mouth.  It's pick up fistful of sand, put sand in mouth, repeat 80 times at fast-speed.  So I asked God for a miracle.  Maybe a glimpse of hope.  Maybe we won't have to carry her the entire time.  I'm fine with keeping my eyes glued on her, I just don't want to be dealing with the eating of sand issue. I want her to enjoy sand like every other neurotypical two year old...

Well, again God provided a wondrous miracle for us.  Upon arrival, the shore was lined with hundreds of tidal pools before you actually get to the ocean.  It took about 20 minutes for June to get the eating of sand out of her system (literally and figuratively), then she was off to roll, tumble, smile, laugh and wade in the pools of paradise.  It was a definite therapeutic experience and as you can see she was truly delighted!

Apple treat

God has a sense of humor. So, yesterday I sent Rich to the grocery store to pick up "fruits and vegetables" for the week.  That was mistake #1 for me.  He came back with exactly one tomato, a cucumber, string beans, corn, zuchinni, lettuce, and one very large cantaloupe. Instead of thank you, I said, "Where's all the fruit?".  He said that everything was too expensive, that bananas were 70 cents a pound, that the apples must've been from California.  Fine (I thought).  Does he realize how much our son loves apples? How much he'll be begging for them all week. It's one measly apple.  He's not asking for a ride to the moon or a trip to Busch Gardens (although he does ask for that sometimes), he just wants a stinkin' apple. 

Two hours later, after dinner, after the nightly summer walk, after the bath, the pajamas and bedtime stories, James comes creeping downstairs to give me a kiss goodnight (while I'm doing dishes, I didn't want you to think I was relaxing) and also to ask me if he could have an apple before bed.  I sort of giggle and say, "You'll have to ask your dad about that".  He ran back upstairs and I didn't hear any conversation about apples, but I was thinking, "My husband is such a tight wad.  He can't even provide apples for us. He thinks they're a novelty. Untouchable.  A treat."  Little did I know God had bigger plans to show me just how much He cares about me and my family and a little boy's desire for...apples (and a trampoline...but that's another story).

Fast forward to the next morning.  I got up early to meet my friends at the Botanical Gardens for a walk and a frolic in the fountains.  It was so incredibly hot I started melting like an ice cube.  I had perpetual dew all over my upper lip.  I can't believe my friends let me walk around like that. When I checked in the bathroom mirror, I looked like a sweaty old man who had just harvested the fields.

Anyway, my son disappeared up the hill with his friends to check out the "other side". He's an explorer of sorts, and now I'm realizing he will maybe find lost treasure in his lifetime.  And then....here he comes over the hill with treasure.  A grin on his face and an armful of apples is what he carries. They're rolling down the hill after him and he's running to my carriage dumping them in the under basket, squealing with delight over his newly found booty.  As I crept up the hill to discover the apple tree just beyond our view, I took a picture of my son and his friends hoarding and gorging on apples and of course, promptly sent it to my husband.  I sort of just smiled and was gently reminded of God's provision for our family.  He really does care about the smallest of things, doesn't he?

They have worm holes and were deemed possibly uneatable by the staff.  They're wrong. These are the best we've ever tasted. 

The perch

Lately it's been a bit comical around here with all the funny things my toddlers are doing.  You know, the usual hunting for dragons with flashlights, or using the holes in Mr Potato head for any and every extremity, or eating every extremity, or putting your hands in the potty and swishing them around a few times (I think I've mentioned this before), or just plain eating what's in the potty, or my absolute favorite...asking God daily to deliver a trampoline to our back yard.  

 Well, my daughter has been obsessed with a certain position in our house.  The funny thing is, my son was NEVER allowed to sit on this antique piece of furniture, nor would he be allowed to lounge on it and take a nap, drooling...No, he was firmly told, "No!" and redirected to another spot.  Well, one day I walked in the living room and found Iva June lying up on the coffee table, hanging out like she was sunning by the pool. I at first laughed, but then took a closer look.  She had her whole body pressed firmly against the marble tabletop (drooling and all).  I watched and waited and she did not move, so I left her there, and after thirty minutes or so she hopped on down and got back to playing (I mean, chasing strings and eating crumbs off the floor and waiting for the floor vents to blow in her face).  We have come to call this very familiar spot her perch.  What's even more spectacular is she does tricks up on the perch. She hangs her legs and arms off, does a back bend to reach toys and move wagons, all from up on the perch...  Concerned parents and therapists come by and say, "Ut-oh, she's on the coffee table. Do you want me to get her down?" "No," I always reply. "She's just hanging out on her little perch".  She gets so much joy out of it.  I don't know if she likes that she's higher up, or she likes the cold marble against her belly (she's low sensory so this is likely), or if she knows something we all don't, like you get extra energy from recharging on marble.  Either way, it's her spot, so I thought I'd take some pics:

She thinks she's hot stuff if she hangs one leg off.

I know...frightening she's resting on a laptop. My husband took this pic. Blame him.

June revealed

Just yesterday we brought Iva June for her two year old pictures with our friends Scott and Adina of Hayne Photographers.  It was quite evident during the photo shoot that we weren't going to get a "normal" toddler picture.  No sitting in pretty buckets draped with textured blankets, no standing and smiling on the tree stump, no looking into the camera lens, no looking at smiling faces, no smiling at smiling faces either.  There were just two things she really wanted to do at the studio.  Chase the fan AND (obviously) chase the cord belonging to the fan, and pull on the very funny long floor lamp, which Adina so graciously let June destroy during the photo session.  It will be a miracle if Scott can show us anything cute, but I'm sure he'll do it because he always does. 

So all that to say that my daughter is feeling more and more autistic lately.  I've been deleting all the pictures where she is flapping her hands, shaking her head violently, and crossing her eyes, but I realized just today that these things are exactly what makes my daughter unique and special, and I shouldn't just delete them.  Today we were at church and she got upset about something and started throwing her head back and forth and knocked my head so hard that it sent shivers down my neck. I'm realizing that people are now viewing her differently and I'm going to have to start getting creative...Up until this point, I've posted cute pictures and videos of June, but today, I'm going to let you see a little but of June that I really don't want you to see:

I'll post again when I get cute pictures from Scott. Until then, please pray for little miss June who is, again having a hard time sleeping, and is also starting to get very frustrated because she cannot communicate her needs/wants to us very well.  I never thought I'd thank God for a baby's cry, but aside from the few sounds she makes, that's her only way to tell us that something is wrong. Thanks for reading, for loving us....

My favorite pose these days

Happy Birthday Iva June!

Today my baby girl turns two years old.  And yes...we still call her "baby girl". My husband says he'll call her baby girl until the day he dies.  It is a bittersweet day.  Iva June has been making slow progress... but last night I saw a neurotypical two year old (again).  I see them daily, sometimes hourly.  You know what I was thinking when she was prancing around the house in her twirly little getup, having cute little conversations and giggling with all the adults. 
Things aren't getting easier. 

Today also marks the day for another glorious event.  I have finally come to the full recognition that, at 35, my metabolism has slowed down (or completely stopped).  I'm annoyed because I've been going to bed hungry for two weeks and this morning I jumped on the scale only to find that I had gained 4 pounds from just yesterday.  Marvelous.  Already took another vigorous walk and I'm definitely guzzling a gallon of water.  Maybe I'm eating too much salt. 

This afternoon, I'm sure we'll celebrate by splashing around the kiddie pool (like we always do), even though my son has a mysterious fever of 102 (still). June recently received this papillon from her Grandma for her birthday.  She uses it in the tub or the pool and absolutely loves it. I'd highly recommend it:

 
The best part of my day is yet to happen.  My mom is arriving on a train at 6:40 pm this evening.  My three year old son is the most excited.  What toddler doesn't want to pick up his Marmelade from a train station?  It will be the biggest event of the day.  Don't you just love your mom?

So, Happy Birthday to my sweet little Iva June! You have filled our lives with sunshine and joy in the most unexpected ways.  You continue to surprise us with your recent "big girl" tricks (like, last month, when I found you had climbed up on top of our kitchen table...and your recent sippy cup proficiency).  When you wrap your little arms around my ankles for a hug, I just want to melt.  When you cry, I want to hold you and tell you that you can stay little forever.  And, the smile of delight that comes from the depth of your soul, is so telling of the future you will have. Bright and cheery, ordained by God.  I love you.

Birthday princess outfit from Grandma Carolyn

Bear Days

It felt like it was 115 degrees here in Norfolk today.  I mean, the weatherman said it was only going to be 90, but I think he was wrong.  I can tell by my now crunchy hair and puffy salt lips.  I went to the zoo this morning with my model friend Lindsay.  She didn't shed one bead of sweat though-just looked completely perfect the whole time.  I, on the other hand had tiny rivers of perspiration flowing down down down my forehead ricocheting off the tip of my nose....I did NOT look fresh the whole day even though I kept applying Clinique pressed powder and lipstick.  I needed a shower by 9:00 am and we hadn't even gotten out the door yet.  We were still in speech therapy....

I did too much today.  I keep saying yes to people.  I have that problem.  I don't want to disappoint anyone and I don't want to miss out on any fun.  This has been an issue since I was a toddler, but it seems to ebb and flow with age.  I have days like today and then I start saying no to people for a few days so I can feel like a normal person again.

I'm really not here to share about my boundary issues, I'm here to tell you some good news about June!  She had her third neurofeedback session today which went perfectly.  She didn't even pull at the wires on her front right lobe or her left ear.  The other exciting thing is that it is WORKING!  Dr. Fly showed me all the areas that little June needs to work on (and she has many).  We determined that before we could move on to the more important areas, we'd have to get her sleep under control.  I didn't realize she had been so sleep deprived over the last two years of her little life.  She hasn't been able to put herself to sleep since she was an infant and over the last few months, things have gotten worse, to where it would take her sometimes two or more hours to fall asleep on her own.  She was also awakening many times in the middle of the night screaming for no reason at all.  Very unlike herself.

So for the past three therapy sessions, we've only been working on sleep, but just after her second session, she fell asleep in the car, then later that night fell asleep on her own and for the first time in months she was able to stay asleep for the entire night.  This has continued for a week and we even went on a camping trip this weekend! Hallelujah!  The only thing we have to do now is train my husband to stay away from her in the middle of the night.  He misses getting his princess and lulling her back to sleep with his deep soothing voice and gentle pats of comfort.


And because she is getting sleep, she is doing some other amazing things.  Just recently, she's been walking around like a bear (she WANTS To walk!):

Thanks for praying along with me about these neurofeedback sessions.  I'm excited to see what God has in store for my sweet little bear.

Just after the camping trip.

Neurofeedback

I am hopeful. Tomorrow I bring little Iva June to her first neurofeedback appointment.  I've researched and heard lots of good things about the journey that we are about to embark on, but I don't really know what the outcome will be.

To catch you up....June received a "brain map" a couple weeks ago, where they placed a snug little cap on her skull, stuck electrodes and goo all over head and measured her brain wave activity. Here she is.

 It was obviously a bit of a struggle to keep her from not ripping the wires off her head, but with Rich's amazing redirecting skills and a couple of strands of mardi gras beads, I am hoping they were able to obtain a reading.  The reading will show us the areas of her brain that are weak and strong, and also, the areas where they will need to place the electrodes for therapy.

Application of goo 

 

 

 

 

 

 

 

 

 

 

 

 

 

Daddy's shoulder is always best.

 

 

 

 

 

 

So, tomorrow we go to find out the results of the brain map, but more importantly to get June's first neurofeedback session. This is done by a Licensed Family Therapist.  This is not considered a medical procedure, although many neurologists work with therapists who do brain mapping. 

She'll sit in front of a screen that looks very much like a video game.  When her brain does the "right thing", the game will reward her by giving her pretty pictures to look at, color bursts, etc.  I am really stating this in the simplest of terms.  Go here for more:

www.eeginfo.com

In the the meantime, would you pray with me that we see results either quickly or not at all so we know whether or not to continue with this therapy? I am banking on change.  There have been too many things that have lined up so quickly that I know God wants us to explore this....including giving us a friend down the street who will be able to do therapy in her own home with Iva June.  I'll let you know what happens in the next few weeks!

Pink push buggy

Just yesterday we were at playgroup and the hosts surprised all the toddlers with a little post Easter egg hunt outside. I mean, amazingly they had at least 7 Easter baskets on hand and when we needed just one more, they went in the back and pulled another one out of (God knows where).  I found this hilarious because I pictured the egg hunt at my house and I'd be emptying out containers, flower pots and fruit bowls trying to give small children Easter basket hope.  Aside from this, the bunny hop was completed in about 7.5 seconds.  Then the kids sat around sneaking jelly beans and we oohed and aahed over the neighbor's cool yard.

Miss Iva June started wiggling around at this point and thrashing backwards (as she usually does).  She clearly wanted to get on the ground like the other kids....so I let her (against my true wishes).  I watched that little girl try to put her feet up in a V-position so that she could try to "walk". She became instantly frustrated and started crying...something she's been doing more of lately.  My heart saddened as I knew she wanted to join in all the bunny fun, but physically couldn't.  As she crawled around the yard, my sweet friend Mandy kept pointing out that she was eating leaves, pods and dirt again....dirt was everywhere....on my face, down my neck, and therefore down my shirt.  June had dirt all in and around her mouth.  See, this is what happens when I let her crawl around the earth.  It's a love-hate relationship, this dirt.

On the way home, we got sidetracked at another friend's house and I just happened to take June out of the stroller and let her ride in a little tikes car that was abandoned because it was "too easy" for all the other kids.  It was perfect for June. She smiled while she was riding and finally cried when it was time to go.  Her little hands gripped the steering wheel like she was a race car driver.  She sat up super-straight, as if to boast that she is a big girl now. 

As I dragged both kids home, my mind started reeling.  I HAD to get her that little tikes car.  So, after I put the kids to bed for a nap, I was on the internet, feverishly searching for a good deal on a push around buggy.  Found one on Amazon. It wasn't going to get here fast enough. I needed one for like, when she woke up from her nap.  Found one on Craig's List. Pink. Perfect.  Drove to the house after dinner and now I have one happy little girl who can actually do something when she's outside. 
So, this is what we did all day:

Walk or Ride?

So it's stroller time around here in good ol' Hampton Roads, and I'm supposed to be happy and excited to tote my kids around in their double jogger, or the  "umbrella" stroller or what my parents call the "cadillac" of strollers.  Usually I am thrilled to get some stroller time in, but lately it has been more of a guilt-fest than anything else for me.

You see, for most toddlers, stroller time is fun... a time to rest from running around, a time to look around, look up, listen to birds.  Well, lately, every time I put my almost two year old in the stroller, she looks up at me as if to say "Not this again...do you know how much sitting in restraint systems I do? Do you know how much listening I do (because I don't talk at all)? And do you know that you should really be holding my two little hands and practice walking with me? Mom, you can walk just fine."  I usually smile and she's always compliant. I put her in there anyway and my son walks or rides-whatever he chooses, but my June, she just rides and sometimes bends her body completely in half so she can giggle and eat her toes.

The zoo is about 1 mile from our house, so we go there quite often. Today was a gorgeous sunny day, so it was just calling for the zoo...and I headed there wishing I could be 100% excited, but I wasn't because I knew what this meant for little June. She'd be sitting all morning long.  So we went anyway. It really was wonderful. We rode the train. The tigers were even out.  It couldn't have been more perfect weather, or I couldn't have gone with a more perfect friend and her kiddos.  So we walked around oohing and aahing over the new exhibit and the new monkeys, the black bears....June squiggled around in her cadillac stroller, not interested in animals, completely giving up on getting out of her seat. I picked her up every once in a while to show her the animals that she was completely uninterested in. She was, however, fascinated with the cages. So, we touched lots of cages, wires and fences. 

At the very end, we were all staring, mesmerized by the tigers and she was smiling at the ceiling, her fingers dancing. I looked up and I swear they put those things up there for special needs kids. Two brilliant (fake) ginormous Japanese dragons were hanging on the awning above us. She smiled...took it all in like it was a supernatural phenomenon as they were blowing in the breeze.  After a snack, we headed home. 

Later this evening (on another walk) my husband asked me if I had done any "walking" with June today. "No", I said. "Tomorrow" is what I'm thinking.

Song for Iva June

Today a sweet gift was given to us from our friends James, Matt and Zach.  They've been working on a song for Iva June and this afternoon it arrived on our doorstep with a cute little case cover and a professional looking burned copy of the CD that they will enter in a contest to C.R.E.A.T.E. Songwriter Search in cooperation with CCM Magazine and Provident Music Group in Nashville. We would like to thank them for capturing Miss June's personality so very well....musically and lyrically. This was an unexpected gift for us and a little piece of heaven.

Have a listen:
A love so strong

She better twirl

My dear friend Meryl is 8 months pregnant and is waiting to give birth to her precious baby girl. Meryl is the type of friend who is always there when you're crying, who seems to call you to go on a walk just when you need it, who's always up for a last-minute adventure and who gives you a manicure while you watch a movie, while SHE'S pregnant.  She's a sweet Southern Belle and "giving" just happens to be her gift.  To top it all off, she's absolutely gorgeous with long hair like your Barbie doll.  It is only natural that I would want to give her some of my most favorite baby clothes. 

Today I went through all of my daughter's 0-3 month clothes...reminiscing, remembering, wishing....I quickly packed them all up in a bag in case I changed my mind because I'm so emotionally connected to them all. It was time...I was running out of room in the closet. You see the other great thing about Meryl is she is just 5 houses down from my house, so I quickly trotted down there, peeked in the window and saw her with her precious son (my son's bf) and her wonderfully supportive husband eating peacefully...these last few weeks before the BIG arrival.  I quickly dropped the bag of clothes on the doorstep, turned around, and it happened...my eyes started welling up with tears, I started crying a little harder and wondered what in the world I was crying about.  There was something about that moment I remembered too clearly...just 21 months ago.... My son, my husband, and my pregnant belly all looking forward to the bright road ahead, visualizing the first meeting with my little bundle of love who would gaze into my eyes, cry when I left her with strangers and curiously explore her world. I was so wrong. 

But, God was so right.  You see, I'm finding just how really selfish I am. I want to go to the Zoo and the Botanical Gardens every day, walking and chatting with friends while our kids bounce around our feet and we share stories of bumped knees and hurt feelings. I don't want to sit through therapy session after therapy session and go to doctor's offices so they can tell me to run down the hall and get a few blood draws and order large contraptions so she can see better, breathe better, live life better.  I don't want to squish her food up anymore.  I don't want to carry her anymore. I don't want to pretend I'm fascinated with straws, lights and razzberries anymore. You see? I'm selfish.  And this precious little June bug pulls me out of that world, and into hers, and once in a while I mourn all that could have been.  Every ballet class, every sleepover, every Hello Kitty sticker, every twirling flouncy skirt. 

So I made a deal with God.  I bought her a dress the other day. It was on sale at Hanna Andersson for $20. Christmas Red Love to Twirl Velour Dress.  I am praying she will be able to wear it this next December. She will. And she'll twirl. 

Whine

 

Today was one of those days that started at approximately 4:00 am with a loud wake-up call from my son barfing up his chicken soup from the evening before.  I had been waiting for it for days, but I honestly thought we were in the clear.  My daughter had gotten the virus about 4.5 days earlier and was in recovery mode...on the brat diet and only drinking almond milk because I fear what regular milk will do to her system.  

I can't help but giggle at this video.  It just about sums up my day besides all the blog reading I got to do, the reading of Genesis 1 to my vomiting son, and the many loads of throw up laundry I got to wash and reuse and reuse.  I finally put diapers on my son because I got tired of the you know what coming out.  

So I had quite a day planned for us.  James was going to wake up and go to school while June bug and I headed back to the house and had not one, but two therapy sessions with the vision specialist and physical therapist.  After that we'd go get James, rush home to have chicken soup left overs, take a nap and wake up and go to my lovely friend Bernadette's birthday party and eat gourmet cake and cupcakes made by my friend Lindsay of Apple Blossom Bakery (http://www.facebook.com/profile.php?id=572740213&sk=info#!/pages/Apple-Blossom-Bakery/190142917673857)Then we'd whiz home and drop the kids off with a babysitter and head out to our evening appointment at 7:00 pm.  Guess God wanted me to stay home today....

I'm learning to really enjoy the quietness of home.

Have you tried straws?

Just recently we took a long trip to Connecticut to visit my family and successfully made the long trek back....I am convinced we would not have survived the trip without one simple invention...THE STRAW.  It started in Chick-fil-A.  I was at the table trying to ward off boredom blues with my twenty-one month old when I finally ripped open a straw and gave it to her. To my advantage, my daughter's obsession with lines and bendy objects led her to at first, smile at the straw, then tentatively chew, then ferociously gnaw on the straw.  She bent it into a million positions with graceful agility while I sat back and wondered why I never thought of this before, why this isn't stated in the Mommy handbook of all handbooks...SO, I did as any other mother would have done.  I grabbed three dozen straws (without the management seeing), threw them in my purse and headed for the car like a woman who just robbed a drugstore.  The whole way home, I just kept chucking straws in the backseat.  One by one they dropped to the floor.  No biggie. It's on Chick-fil-A.

Our obsession continued...was in the super market the other day when I spotted a package of 100 bendy straws with all different colors and stripes. How could I pass them by?  Swept those up without a second thought. I have simply come to the conclusion that every mother should be buying straws by the hundreds.  Why aren't they selling them at Babies R Us, Target and the local baby boutique at the register?  They should be handing them out instead of candy and popcorn. I'm convinced that this is the secret thing that needs to be in every mother's purse. Mandatory if you have toddlers...

If, however, you need a more durable straw....maybe one, that your child could use for therapeutic chewing, go to the hardware store and pick up refrigerator tubing. It comes in long ten foot portions.  June REALLY likes the refrigerator tubing.  AND my speech therapist even endorsed it, saying it was really good for her to chew on...especially those back teeth.  I give her that as an extra special treat. Who knew my child could be so motivated by a straw? Try it yourself!

June wishing she had a straw

Breath of Life

Last night was the first night that June wore her CPAP all night long.  I am happy to report that she did remarkably well and after Rich arranged the head gear correctly (I failed the night before by myself), she peacefully slept with only two faint cries in the middle of the night.  

For those of you who are wondering, a CPAP machine goes over her nose to push air through her airways so they remain open and don't collapse at night.  This helps her sleep apnea issue.  In June's case, she doesn't have oxygen deprivation, she has REM sleep deprivation because she's gasping for air at night, thus waking herself up.  Without REM sleep, the brain could have trouble functioning properly, leading to learning difficulties and tiredness.  We believe this could be why June falls asleep in random places on some days.

Thank you for your continued prayer during this time. I do have one small miracle to tell you about.  June has a rather long frenulum which rests in between her two front teeth (this is the piece of skin connecting the upper lip to the gum).  It is very painful for her and it bleeds when we brush her teeth. Dentist has said we may have to have it snipped.  I've read that this piece of skin contributes to all sorts of feeding and speech problems.  On Saturday, February 5th at 12:00 noon, June had a horrible fall on the edge of our bed.  Her mouth bled for quite some time and she cried hard.  By the end of the day, we were happy to see that it had healed up quite nicely, and her frenulum was no longer there.  Tonight, little June ate steamed broccoli for dinner with rice and small bites of pork.  This was extremely encouraging to us after months of mashing up her food.  I am hoping this is the start of many dinners with the family....She also has been enjoying teeth brushing time and has been letting us get near her mouth/face more. 

Today, June also had her yearly developmental evaluation with Early Intervention.  She scored as low as a 4 month old for social issues, and as high as a 12 month old for self-help skills like feeding.  No surprises there...

Well, it is now 9:30 pm, and so far, so good.  No little cries coming from my baby girl.  I guess the CPAP machine is doing its job well.  Breathing new life into those precious airways....


Thank you God for the gift of peaceful sleep.

Update

Well it's 9:00 pm and I have been anticipating this moment for weeks...where I would sit down, write and share with you all the wonderful things that have happened today.  I wanted to do it earlier, but there have been people literally knocking down the door all day long. I told God if I was going to do this I would need some encouragement all day long and He supplied visitors of prayer and encouragement equally spaced throughout the day. I didn't have time to be hungry or even grumpy with my children. 

The day started off at 6:30 am with a group of about 12 of our friends praying for June over coffee.  During the session, our friend Frank was reading from scripture and Iva June managed to get up in his Bible and flip it to the section she thought he should be reading.  Book of John. Story of Lazarus. Frank read portions of this aloud to us. My friend Diane said, "I guess she has a word for us!". 

Here's a reminder:

But when Jesus heard it, He said, "This sickness is not unto death, but for the glory of God that the Son of God may be glorified by it." (John 11:4)

The day wore on and I admit I kept thinking I would see June perhaps start walking toward me, or maybe start speaking.  I didn't see those things, but I did see some prolonged eye contact when I was feeding her lunch.  She was also unusually punchy today. Laughing hysterically all afternoon over what appeared to be nothing.  I kept thinking God was tickling her when he was working on her neurological system.  She also kept falling asleep all over the place today.  She was just so tired from being prayed over all day!

I just left my son's bedroom who went to bed much later than usual because we had prayer visitors and then he had to go poopy on the potty, then he tried to "wipe himself" all by himself for the first time ever. He was so proud of himself with the toilet paper all strewn about the bathroom.  Bath was definitely in session.  Remarkably he played well by himself all day long with little attention from me and he even got out the doctor's kit by the end of the day and started using it on June (and myself). I think he was trying to tell God something.

Thank you so much for those of you who participated in praying (and some of you fasting) for Iva June today.  We feel God at work somehow...time will tell. Looking forward to reporting to you all the little miracles along the way....

I leave you with a song my friend James wrote for and sang for my baby girl this morning:

Iva June - a song of hope

Iva June, where are you?

Oh, there you are, playin' in the living room

Peak-a-boo, I see you

My baby, Iva June

Iva June, how old are you?

Seems like yesterday, you were born in June

Now very soon, you'll be two

Sweet, Iva June

Iva June, I see you...

Five years from now, oh the dream of you

Wearin' dancin shoes, and a pink tutu

My darlin', Iva June

Iva June, how are you?

Your joyful smile, makes me smile too

Your laughter melts, my heart in two

Precious, Iva June

Iva June, I need you...

Bless her Lord, my baby June

I love her so much...please God heal her soon

I love you Iva June

I love you Iva June

I love you Iva June

Pray for Iva June on Friday, February 4th!

This is really a logistical entry...something I need to share with those of you who are readers.  Many of you know that my daughter was diagnosed with hypotonic cerebral palsy, mental retardation and autistic spectrum disorder in December, 2010.  On Friday, February 4th, people all across the USA will be praying and fasting for my daughter.  I wanted to invite you to pray whole-heartedly with us at any time on that day.  It is really touching that hundreds of people will be approaching the throne of grace on behalf of our precious Iva June. 

Would you pray for the following?

• increased muscle tone (you are born with your muscle tone and she currently has the muscle tone of a child with down syndrome)
• better vision and healing of astigmatism and rotational nystagmus (pupils look like they are rocking at times)
• improved social engagement and eye contact
•  strength to walk
• healing of sleep apnea and will to keep on mask at night
• mental capability increased
• ability to speak
• ability to eat age appropriate food
• a strengthened immune system 

We are boldly asking God to heal our daughter, however if he chooses to use her just as she is for His glory, then we are at complete peace with this decision. We already feel honored and blessed that God chose us to raise this angel of grace.


My friend reminded me of this recently:

"Bless the LORD, O my soul; And all that is within me, bless His holy name! Bless the LORD, O my soul, And forget not all His benefits:  Who forgives all your iniquities, Who heals all your diseases, Who redeems your life from destruction, Who crowns you with lovingkindness and tender mercies."
Psalm 103:1-4 

Pink Wire Glasses

So June got her new glasses a few days ago.  I wish I could tell you that things are going well, she's making remarkable eye contact and she seems to be scrutinously picking up tiny little pieces of lint only to be seen by keen hawks swirling up above....

But unfortunately she's not. She's the same little sweet girl who we love and seems to be completely oblivious to the fact that she needs them. We put them on, she takes them off, we put them on, she takes them off and on and on this cycle goes until we get tired of trying, and she gets so frustrated that she whips her head back and forth, back and forth, back and forth like she's a rockstar. 

I admit it's tiring.  I can only report that she's probably worn them a total of 90 minutes since Monday. The second day she had them, they somehow managed to get a giant gash right through the middle of one of the lenses.  The other plastic blue glasses we had somehow seemed to be more "baby proof" which is what they claimed to be, however, who wants their eyelashes rubbing against plexi glass all day long?  This is why we chose to go with the new and improved (Fisher Price) pink wire rimmed glasses.  Who knew Fisher Price makes glasses too?  What else do they make?

So even though June isn't loving the glasses, she has become increasingly more social over the last week. (Hallelujah!) I often find her at my feet grabbing my legs because she wants me to pick her up, and she continues to look for my hands so she can grab them and we can go (fake) walking around the house.  She laughs the whole time like she can't believe she's doing it.  Tonight she let me rub her body as I sang to her while she was in her crib.  This is new for her and it makes me beam from ear to ear when I think of these precious moments with her!

So you might not see June with her new glasses on, but you might just see her with a smile and a twinkle in her eye, and for that I am truly grateful. 

In her favorite drawer

Cruising

So it's January and this is the time I usually feel a bit depressed.  For some reason it hasn't happened this year.  Maybe I haven't had time, maybe the vitamin D and B-12 I'm holding under my tongue is having a positive effect on my serotonin levels, or maybe I just feel completely loved and cared for by so many of my friends and family...and of course, by God.

I can't lie though, I've had some hard days.  Last week alone I had five doctor appointments, five days in a row, along with three therapy appointments back to back.  The last appointment was an overnight hospital stay with a sleep study to see how June's CPAP mask for her sleep apnea would work.  All seems to be well and we are now just waiting for the machine so we can hook her up and give it a try at home.  Praying that she keeps the mask on her face all night, every night so she'll be more energetic during the day.  It's really up to her.  Do you know any babies that keep masks on at night?

June's glasses prescription has also changed.  Back in October she started yanking her glasses off, as if to say, "I don't need these annoying things anymore."  Her opthamologist  said the prescription change was significant enough that she would have ripped them off for sure. My therapist also suggested that maybe we change her frame style because they were sitting close to her face. I popped the lenses out and tried them on her. Sure enough. Her beautiful long lashes were sticking out from the frame at least a centimeter. Imagine that every time you blink your lashes hit an invisible wall.  Obnoxious. I changed them to the only other option.  Traditional Pink Wire (boring). We'll see how she does when she gets them this week.

It's been one of those months where June is making incredible progress.  Just yesterday she responded to a command for the first time ever.  She was about to slide down the stairs head first and I said, "Turn around!" and she stopped, looked up, smiled, turned around, and went down the stairs (2 steps) the correct way.  Yay!  And just yesterday, she was eating and she signed the word "more" for the first time ever...and has continued to with things she really likes.  She's also been cruising all over the place and even sitting for a little while on her own...which has been a milestone we've been eagerly awaiting!

Thanks again for even reading this.
I know you have laundry to fold.

Oh-and pictured below is June with her Papi (my dad). My therapist gave us these glasses that light up.  They really promote some great eye contact!