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