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!