Diagnosis

So we got the news today. We've been dancing around these phrases for the last year of Iva June's life, but today, the Neurologist looked at me and gave me the news I knew had been coming for months, but yet, still hoping we could wait just a little while longer just to see if perhaps, anything has changed.  The first two were not surprises: hypotonic cerebral palsy and autistic spectrum disorder. The last one was startling: mental retardation.  With tears in my eyes I asked if he thought things could change, if there was still a chance that there was a delay.  He said no and he's very sorry, handing me a paper towel to dab at my eyes. 

There is hope.  Isn't there always? He said he thinks little June may surprise us and he obviously does not know the extent of each one of these diagnoses.  She's only 18 months.  The diagnoses may change with time and with testing.  These are labels.  We have not found causes yet. 

I now have a vision for my sweet girl.  I can see her when she is 5...dancing on the beach in her pink tutu, frolicking in the water with her little quirky self and giving me that contagious giggle because she's having conversations with the angels. 

Good thing there's an eternal plan.

"For I know the plans I have for you declares the Lord. Plans to prosper and not to harm you, plans to give you a hope and a future. Then you will call upon me and come and pray to me, and I will listen to you.  You will seek me and find me when you seek me with your whole heart." Jeremiah 29:11-13

Little Miss Pilgrim

I just want you all to know that Rich and I are doing well.  We love our daughter and she is a sweet gift to us.  It's sort of a relief to have a working diagnosis.  Thanks to each one of you who support and love us on a regular basis!

Video EEG and Sleep Study

Just one more test. It seems that there's always something else they can test our precious princess for, so we find ourselves at CHKD (Children's Hospital of the King's Daughters) yet again.  This time, thankfully, no pain, just a long, annoying process. 18 hours to be exact. 

I was fairly anxious about this procedure to begin with, but the day before, the nice lady on the phone reassured me that they'd do their best to keep Iva June comfortable.  They held up their end of the bargain, however, did they forget that we have a CRAWLER on our hands here? Prep needs to happen the hour before, not 5 hours before....

Regardless, we arrived and I was relieved to see them strap her to a board. I asked the nurse if we could keep her there all night. She looked at me like I was nuts.  She was really quite happy and snug as a bug during this part...

Then they began the process of measuring, marking and gluing 25 probes to her head.  She was still pretty happy and only started squirming at the very end....






All wrapped up with a sock cap on and Rapunzel's ponytail, they asked me to pick out a "backpack" to put all the wires in. I'm thinking, "Are you kidding me? You think she's gonna wear a backpack for 4 hours? " I picked out the blue monster because it was the most colorful.  Little did I know she would never see it:

So they moved us to another room which was filled with big computer devices, a bed, and all sorts of wires and contraptions that I was supposed to keep her away from. I ordered a "toddler tray" for dinner just to have something to do with her.  Nothing she could eat there.  Perfect. Chicken strip snacks for me.  Oh-one more thing before the nurses left. They needed to "plug her in".  So now she has a long wire tail. So, here I am, following a toddler around a filthy room making sure she doesn't eat her tail or pull her stocking cap or probes off of her head.  I start moving furniture to blockade various parts of the room and goodness, we need a crib.  Do they really think she can sleep in a bed?  How many hours before my husband gets here?


My gracious husband volunteered to sleep through the night with her.  He told me the rest of the story...they glued more probes all over her body and put a mouth/nose piece in.  She finally got to sleep at 9 pm and at 3:30 am she had "had" it and was thrashing about trying to get it all off of her. At around 5:00 am they removed some of the glue with nail polish remover and sent her home around 6:00 am.

 Poor little June....she arrived in a very tired, confused, almost panicked state, still covered with hard glue all over her body and matted hair.  She fell asleep on her Daddy's chest (her favorite spot).  She's pepped right up after a three hour nap, but we're still trying to get that glue out....any suggestions?

The Fireman and the Dalmation

I am quite sure I'm joining the millions of mommy bloggers who have much to say about this evening.  I mean, we've prepared for this event for weeks now...the candy consuming started last week at school and for the first time ever, my son is officially obsessed with lollipops.  This, in fact is great for me and my husband because a lollipop takes 45 minutes to eat, and by then there is no time for more candy, nor IS there any more candy.  The downfall is the horrible stickiness that has been all over his body since this morning when he consumed his first lollipop at church.  Coincidentally my husband re-caulked the bathroom tub this afternoon.  I started panicking when I realized I might not be able to bathe my dingy little dalmatian and very sticky fireman. Hope it's good caulk.

These Halloween evenings are especially comical if you have pre-schoolers.  You've been talking about "the costume" for weeks and if your son is like mine, he is absolutely afraid to put it on. I was utterly amazed when he was begging me at dinnertime to put his fireman hat on so he could go get treats from neighbors, specifically the next-door neighbor who promised him cookies.

After bug spray, a fractured treat bag, many attempted pictures (are they ever perfect?), a few stressed words passed back and forth between my husband and I, I gather up my children while the mobs approach.  We head down the street for our adventure.  James reluctantly grabs candy from neighbors in the dark while a mysterious fog seems to surround us.  I keep spying to see what type of candy he's getting and secretly hope for chocolate.  Not ten houses in, he wants to go home.  Fine with me. His treat bag is overflowing and he's dropping peanut M & M's on the ground. Perfect.  I scoop them up and hide them for later.

The after-party is better.  June pants around the porch like a real-live dalmatian, exploring, happy in her own filth.  James strips from his costume and sucks his cherry lollipop for what seems like an hour.  We hand out candy to the scary teenagers and random people from other neighborhoods.  The toddlers have all gone inside.  I start counting down the minutes til I will hopefully be able to fill up that newly caulked bath tub.

And you clap when her hands are in the potty

I realize that the last post might have scared some of you and I want you to know that I am doing just fine.  The gigantic orange sunset confirmed it.  If you live in Hampton Roads, I am sure you all saw what was out my kitchen window this evening...a little glimpse of Heaven:

You always hear people say that you treat your children differently, but I have to say that I never really believed them until I mothered two very different children.  My first child I taught from a very early age (I am talking 6 months) what right and wrong was.  He fed himself a burrito from Moe's at one year, and at 18 months he knew what a time-out was.  And goodness, his hands would for sure NOT be in the potty, but it is absolutely acceptable to get dirty from head to toe, because after all, he is a boy and he needs to learn how not to be prissy.

Now, it is quite ironic that I just praised my 16 month old for pulling herself up to the potty and splashing her two little hands around in there...I mean, we've been waiting for this moment with bated breath....I'm also doing things like holding her down with one hand while I'm changing her diaper because I can't stop rejoicing over the fact that she FINALLY learned to roll over a few months ago.  I love watching her naked little butt squirm in the air....and of course my husband still goes and gets her at night when she cries because he's afraid she might not take another breath if we don't listen....

Note her cute little feet, size 2.

Have you ever been?

On the verge of losing it.  I mean, it's been one of those weeks, those mornings where my calendar looks like a pizza-diferent colors, toppings and cheeses.  It's been the week where you only eat peanut-butter covered bananas and miniature oatmeal cookies from Trader Joe's.  It's the day like every other day where you wake up and wonder just how you are going to be able to pour your son's cereal, serve him a healthy egg and his exactly 5 vitamins, then concoct your daughter's highly secretive breakfast (because you are the only one who knows how to create it) that consists of more potions, medicines and fats than the ingredients of a highly complicated Martha Stewart recipe.  And then you have to deal with yourself and by then, you are eating the banana, which your three year old will want a bite of.  And you give it to him to avoid a tantrum.

We're watching Sesame Street because my son just pooped on the potty and I promised him a coveted TV show if he did just that....and I'm reviewing my morning which started after breakfast.  I evaluated my hair while my daughter was scarfing down her bottle and praised the Lord that I didn't have to wash it today because I had forgotten that I had washed it yesterday.  Jumped in the shower, quickly rinsed, and after getting out realized I had no clean pants left because I am "in between sizes" AND most of the Winter clothes are still up in the attic getting eaten by rats and moths.  I picked out the no-fail striped shirt and realized my son and I were almost matching.  No biggie.  Woke up IvaJune because we needed to go get flu shots at the doctor's.  Balanced her on the ginormous pile of laundry so I could find my Winter shoes.  I had been wearing flip-flops all Fall.  She fell all the way down the pile and hit her head on the moulding.  I swept her into my arms and hurried out the door with my three year old tagging behind.

He has no idea where we are going.

We get to the doctor's office and after several hoops and signed documents, I announce to James that he is now getting a shot and he needs to be brave.  So we pray.  I ask him if he wants his bink.  Our doctor peeks in and chats with me about the recent nebulizer treatments and chest PT exercises the pulmonologist has added to our daily regime.  She tells me what I want to hear...which is get it done on days where she is particularly raspy, but on days where she is not, feel free to let it slide and do other brain stimulating activities which are also very necessary.  I quickly ask the nurse (as my son is crying) if this shot is thimerosal-free because I just assumed it was.  It was not.  She said they ran out.  Made the decision to postpone the flu shot until I could find a "clean" one.  I felt like a big loser as she threw them away in the trash.  James starts crying again because he now wants the shot that was just thrown in the trash.  We have to do SOMETHING while we're here, so I tell the nurse we'll take the Prevnar shot for June.  Shot administered.  Thomas the train sticker on James.  We leave and head to the pharmacy to pick up an rx.

Pharmacist tells me that I only owe her only 43 cents.  I can't believe it.  Just my luck! I get out my coins....then she says, "No, it's $10"...and then, "No, it's $66.77...they're saying you have another insurance that will pay." I drive away in tears and tell James he is in trouble for screaming while I was talking to the lady.

I start crying on the way home as I leave a message for my husband to take care of the insurance issue, call the therapist to cancel physical therapy and call my early intervention coordinator to tell her I can't meet today either.  I look over and June continues to lie on the floor like a zombie-she's been doing it all morning.

I have little motivation.  I can feed, clothe, and change diapers, but the monster laundry pile has not stopped growing and neither has the amount of dishes that are in my sink nor the medical bills on my counter.  The clothes that are neatly folded from my mother's visit are not yet put away, and I am ready for a nap.  I know you've all been here.  I am thanking God that my friend volunteered to make muffins (that I was supposed to make) for a shower I'm going to tomorrow and is also bringing me a lasagna this evening.  I still need to give June her chest PT, but she is now asleep, so that will be late (again).


I will rest in this:

"I give power to the faint.  I increase strength to them that have no might."
Isaiah 40:29.

Thanks Lord, for this promise for Iva June and for myself.

Ironically, I'm going to a Women's Conference this evening entitled, "Come Away, Rest Awhile".  I just hope I can make it there....

What's in a name?

I'm finding myself here, late at night...blogging, knowing nothing, not even really even sure how to put this all together.  I'm doing this to help my daughter, to share her progress with my friends and family, and just hoping that someone else has a child similar to mine and can help me find some answers.

Three years ago God blessed me with a beautiful, healthy baby boy.  Everything was so picture perfect, he met all his milestones...I pictured my next child to be exactly like him, but a female version, of course.  

James at 6 months

June just born

For nine months we called her June.  After all, she was due in June.  When my husband picked the name Iva June (Iva, after his grandmother), we had no idea how God would slowly reveal that the pick was just perfect.  Little June grew very s l o w l y.  We were concerned when she seemed a "little too good", made little eye contact, and thrashed backward into these arching positions only meant for a gymnast.  Months later, we are left with only a diagnosis of "hypotonia", however, we have a little 16 month old who is wonderfully unique and we, along with the doctors are searching for answers, wondering what could be causing a 50% global delay.

Every day God supplies me with just the right amount of grace, the right amount of patience, and continues to fill me with his joy or send a friend when days seem to be difficult.  The name Iva means "God is gracious", and He has been just that.  So many gifts have been given along the way: a mom away from home, a hospital just five minutes away, and a fairly easy three year old.  God knew. I'm looking forward to sharing with you a little more about my precious daughter each week.  I can't promise a fancy layout or snazzy contests, but I can promise honesty.  Thanks for reading.