Grants for iPads?

See that black thing Conner is holding onto with his right hand?  Any idea what that is?

 

It’s his big brother’s iPad, in a case, taped to the hospital crib railing.  (This photo was taken when Conner was hospitalized with Salmonella.)

 

This iPad his been such a life-saver for many of our children, particularly our children who have special needs.  Doctor’s visits, hospital stays, blood draws, driving here and there…the iPad is always right there to the rescue!!!

 

“Our” iPad isn’t really “ours”--it belongs to our 12-year-old son, Sawyer.  He bought it back in 2010, with his own money, shortly after we gave this iPad away.

 

We’re so grateful that it’s Sawyer who owns the iPad in our family because he has such a generous heart that he always allows his mommy and his siblings to borrow his iPad.  Unfortunately, many of his siblings with special needs are super duper rough on the iPad.   As much as I’ve tried to protect Sawyer’s iPad, it’s been thrown countless times, stomped on, chewed on, even vomited on!!!

 

As our children with special needs are requiring/wanting more and more and more of Sawyer’s iPad, I finally decided to go on a mission to get an iPad for our children with special needs to share.  With Selah’s upcoming trip to Baltimore to see Dr. Ben Carson, I’d like to get another iPad QUICKLY!!!  Selah doesn’t sit still…ever…and we’ll have about 6-8 hours of travel.  The iPad will be our best bet at helping Selah survive the sitting still time required when traveling!!!  I’m sure Sawyer will let us borrow his iPad for Selah’s trip, but it would be awesome if I didn’t need to borrow his, as he uses it daily. 

 

So, my question for y’all today is:

Do you know of organizations granting iPads to children with special needs?

 

If so, please leave a comment to let me know how to apply.  (Or you may email me at BossYourHeart (at) gmail (dot) com.) 

 

I asked about this once on my Facebook (I think back in August).  I was told that Texas supplies iPads to children with communication disorders through Texas Department of Assistive and Rehabilitative Services.  Cooper and Conner both qualify since they’re non-verbal, but DARS apparently requires the applicant be able to push a button to communicate a thought.  Cooper and Conner cannot do that yet—that would be something many of the iPad apps would teach them to do over time.  The more they can work with speech generating apps, the more opportunities they’ll have to succeed at this, but they’re not there yet.

 

Y’all always have such great advice, suggestions, recommendations, and wisdom.  You’re better than Google!!!  I look forward to hearing from you regarding what grants might be available to our children with special needs.  Thanks SOOOOOOOOOOO much!!!

 

PS  If there are eligibility requirements regarding specific types of disabilities, here’s a list of some of the disabilities in our family (we have at least 6 kids with special needs who would benefit greatly from a variety of apps geared toward special needs):  non-verbal, speech/language delays, mentally disabled/mentally challenged, learning delays, communication delays, global developmental delays, Dyslexia, fine motor delays, receptive language delays…there are more, but maybe it’s best to just get a list of all of the possibilities for grants, then apply based upon each child’s needs.

Strabismus

OK, ignore the dirty/snotty face in these pictures.  I hadn’t planned to take Selah’s picture, but she saw my camera and wanted me to photograph her, which is RARE for Selah.  So, of course I took advantage of the “right here, right now” opportunity and snapped some pics of Selah while she was cooperative.

 

Oh, ignore the matted crazy hair, too.  Remember, I didn’t realize anyone would ever see these photos of Selah!!!

 

So, the reason I’m posting these snotty-nosed, dirty-faced, matted-hair pictures of Selah is because I want to talk about strabismus.

OK, remember to ignore the distractions of the dirty/snotty face! 

 

Do you notice how Selah’s left eye turns inward just a tad in the photo above?  That’s a type of strabismus.

 

Selah saw her ophthalmologist yesterday to discuss her strabismus and lack of depth perception.  Selah’s occupational therapist has mentioned this issue to us several times, and her pediatrician mentioned it at her 2-year-old well check, recommending we see Selah’s ophthalmologist immediately.

 

Selah’s ophthalmologist determined that Selah’s left eye is much weaker than her right eye.  The eye doctor believes Selah’s brain has “turned off” Selah’s left eye completely, most likely because it was seeing double at some point.  Did you know children’s brains are able to do that—simply tell one eye that it no longer sees at all so that it won’t see blurry and/or double?!?!

 

Once the brain “turns off” the eye, it becomes weak and lazy.  We’ve started to notice Selah’s left eye laziness more and more often lately, particularly in photos.  It’s challenging to watch Selah’s eyes during the day because we’re focused on following her around and keeping her safe.  When Selah sits in her high chair at meals, I notice it lots more because Selah’s sitting still and facing me. 

 

There are also times that both eyes cross somewhat, as in the photo above.  I’m not sure why this happens.

 

And in this photo, Selah’s right eye appears to be the one that is crossed while the left eye appears normal.  Matt (my hubby) thinks it appears this way in this photo because Selah is actually looking at something off to her left side (in the direction that her right eye is looking), but Selah’s left eye is too weak and no longer working, so it can’t look as far over to the side as Selah’s right eye is able to do.  Clear as mud?

 

There are a variety of reasons behind strabismus, so we’re not positive that Selah’s strabismus is due to her left eye seeing poorly in the past, thus the brain turning it off, or if it’s due to a variety of other reasons.  It might be due to increased intracranial pressure, or it could be due to Selah’s brain malformations.  It’s going to take some trial and error to figure it out.

 

The starting point to curing Selah’s weak eye begins with forcing her to no longer depend upon her strong eye (her right eye).  Many children with strabismus will use a patch to cover the strong eye, forcing the weaker eye to become stronger, helping the brain to turn the weak eye back on.

 

We knew there was no way Selah would ever leave a patch on her eye.  In fact, Selah’s pediatrician laughed and mumbled, “Good luck trying to patch that girl!” when he noticed that her left eye was weaker than her right eye.

 

So, Selah’s ophthalmologist explained another method to help strengthen the weak eye by using dilation drops in the stronger eye.  This disables the clear vision in the stronger eye, which then forces the brain to turn the weaker eye back on, thus strengthening it.

 

The ophthalmologist explained that Selah isn’t going to like either technique (patching or drops), but that’s the first step in determining if her strabismus can be cured without surgery.

 

So, tomorrow Selah will start using the dilation drops.  We will only use them in the evenings, beginning at 6PM.  The eye will only be dilated for a few hours before she falls asleep, but hopefully those few hours of forcing Selah’s left eye to turn on and try to work will be enough to help Selah’s strabismus.  The eye doctor warned me that Selah’s going to HATE these eye drops, but this is necessary.

 

If you have any experience with strabismus, I’d love to hear from you!!!  This is a new one for us.   And, as always, thanks for praying for Selah!!!

Have We Got a Show For You!

I must say I’ve never wanted to gobble up veggies so badly in my life!!!

 

I think Cooper and Conner feared I might actually gobble them up!

 

What a mouth-watering tomato!!!

 

A cucumber never looked so yummy!

 

Have we got a show for you!!!

Selah Will be in Gifted Hands

Have you ever heard of Dr. Ben Carson, neurosurgeon at Johns Hopkins Hospital in Baltimore, Maryland?  If you haven’t heard of him, I encourage you to Google his name, read his autobiography entitled Gifted Hands, and watch the movie about his life, also entitled Gifted Hands.  Dr. Carson has an incredible testimony.  He’s been awarded 60+ honorary doctorate degrees, received the Presidential Medal of Freedom, successfully separated twins conjoined at the brain, developed brain surgeries/procedures that no one else had ever performed (or even thought to do), plus many more achievements too numerous to list.

 

But the thing I love most about Dr. Carson is that he gives all glory to God, which is hard to find in the medical community.  God gave Dr. Carson his gifted hands, and he uses his talent for God’s glory.  Dr. Carson is the top neurosurgeon in the world, and he doesn’t take credit for this—he gives all the credit to God.

 

Why am I sharing about Dr. Carson?

 

Well, Selah is going to see Dr. Ben Carson November 30!!!

 

After I wrote THIS post, several people suggested that I contact Dr. Carson to see if he would review her case.  I had seen Dr. Carson’s movie a couple of years ago, but I never once thought about taking Selah to see him.  In fact, the first few times I saw the suggestions from readers that I should contact Dr. Carson for Selah’s case, I dismissed the idea.  Selah already has a great neurosurgeon, and her problems seem to be more neurological/behavioral at this point, so why would we need to see another neurosurgeon?!?!

 

After about the fifth time of reading comments and emails about taking Selah to see Dr. Carson, I briefly considered it.  Then I talked myself out of it again, viewing the idea from a logical standpoint.  First of all, how would we even get an appointment with Dr. Carson, and then, if we did, WHY would we need to see him?!?!

 

So, I dismissed the idea completely, for good.

 

Then, just before bed that night, I opened my laptop (for the first time that day/night), when lo and behold, what to my wondering eyes would appear?!?!

 

Dr. Ben Carson’s story was open on my laptop.  I hadn’t Googled his name, hadn’t searched for info on him, hadn’t done anything to make his name appear on my laptop.  It wasn’t in an email either.  It was on Facebook!  On someone’s status update (a person I don’t personally know), the very first status update that popped up on my screen, I read words that went something like this, “Have you seen Dr. Ben Carson’s movie Gifted Hands?  Awesome movie about an awesome neurosurgeon offering awesome hope to those with brain issues.”

 

OK, y’all, that movie was released in 2009, yet someone is urging people to watch it in 2012, at the very time that I had dismissed the idea of contacting Dr. Ben Carson.

 

Alright God, gotcha, I thought to myself.  I’ll research contacting Dr. Ben Carson to see if it’s even possible to see him.

 

The following day, which was a Saturday, I called and left a message for Dr. Ben Carson at a phone number in Maryland.  I explained Selah’s diagnoses and her current struggles with behavior issues.  I left my phone number in case someone wanted to return my call.  I prayed that if God wanted Selah to see Dr. Carson, that He would do whatever necessary with that message to make His will known.

 

Monday morning, just two days after I left that message, I received a phone call from the office manager of Dr. Ben Carson, letting me know that he would see Selah!!!!!!!!  She acted so calm and mature, like this was no big deal, so I withheld my screams and squeals of delight until after I hung up the phone.

 

I had to fill out some paperwork and send Selah’s medical records to Dr. Carson’s office, which I did quickly, and then I received a phone call last week telling me the date of Selah’s appointment.

 

November 30.

 

I was (still am) completely stunned.  I still don’t know exactly why God has Selah seeing Dr. Carson, since he’s a neurosurgeon and, to my knowledge, Selah doesn’t need more neurosurgery at this point.  But I'm trusting God has a plan in this, even though I have no clue what it is!!!

 

And we found out Friday that Selah’s EEG, that was done the night of her sleep study (Aug. 28), shows Selah is having seizures in her sleep.  We’ve been dissatisfied with Selah’s current neurological care (neurosurgeon is great, but her neurologist doesn’t have time to see her except every 4-6 months).  I called Selah’s neurologist’s office twice to inquire about medicating Selah for her seizures, but was told her neurologist wants to wait until her next visit, which is at the end of February.

 

We’ve also noticed Selah having “absent seizures” during the day, which I’ve told the neurologist about numerous times.  He still doesn’t want to medicate Selah.  I’m not sure why.  Selah has a documented seizure disorder and she was on Keppra (anti-seizure medication) until 12 months of age, so I’m perplexed as to why her neurologist doesn’t want to treat the current seizures.

 

So, I sent an email to Dr. Carson as well as to another email address for Johns Hopkins’ neurology appointments to inquire about Selah seeing a neurologist as Johns Hopkins as well.  Johns Hopkins is the top neurology and neurosurgery hospital in the world, so I’m eager to see what God has in store during Selah’s visit there.

 

Meanwhile, Selah is now on Risperdal, which has improved her daytime behaviors by about 15%.  Her sleep has been more disrupted by Risperdal though, which wasn’t expected.  Keep praying for Selah, for answers, for help to give her the best quality of life with the best opportunities for her future.

 

Thank you!

Road Trip!

We're road tripping to Oklahoma for the National Team Roping Finals. Our oldest two sons, Parker and Sawyer, are roping in the competition Friday-Sunday, and I'm so excited to get to watch them!!!

Unfortunately, Sawyer broke his wrist Monday night in a team roping accident. He's such a tough cowboy--he's planning to rope despite his broken wrist. He won't let anything prevent him from roping in this event!!!

Satan's been trying diligently to steal the joy of this trip and to rob the boys of their team roping achievements. He will not win!!! Parker had a high fever, severe headache, body aches, and vomiting yesterday (said he felt worse than he had in his life!), but his fever has broken and he's on the road to recovery. He ropes tomorrow (Friday), so keep him in your prayers for a speedy and full recovery. He, too, won't let anything prevent him from roping!!!

Not even 20 minutes into our trip, we had a tire blow out on the RV. But, again, Satan won't win! We made it to a tire shop and God wins again!!! He always does--praise Him!

Oh, speaking of His victories, I keep forgetting to report here that the IRS finally accepted our 2009 adoption of Chrissie!!! Hallelujah! After almost a year of defending ourselves, with all required receipts and evidence, submitting everything four separate times, involving our senator and a tax advocate, we're so grateful to have that mountain moved. Thank you to those who prayed for that situation.

So grateful for the protection and provision of our faithful Father. It's always an awesome adventure when your guide is the King of kings!

Sent from Lorraine's iPhone

www.AllArePreciousInHisSight.com

www.BossYourHeart.com

Adeye’s at it Again!

Click HERE to check out an awesome giveaway on my friend Adeye’s blog.  She’s at it again, and this time she’s hosting a giveaway to help bring 65 orphans into forever families.  Love Adeye and her compassionate, generous, selfless heart. 

 

There are 51 links to 51 fundraisers.  This is a great way to buy some Christmas gifts while you help rescue an orphan, and you also have a shot to win a $100 gift card if you donate and/or share about the giveaway! 

 

I purchased a shirt (link #40—love those shirts!).  I’m a sucker for orphan shirts that include scripture, so that’s why I chose to purchase that shirt.  I’m always on the hunt for an adoption shirt with scripture…let me know if y’all know of any others.  So far, I think I might have collected every single one of them!!!

 

Anyway, I pray for abundant blessings upon these families who are working so hard to bring their children home.  I know there are countless others out there.  Sometimes the need seems insurmountable, but we have to remember that every penny adds up. There’s no donation too small.  If each person would give something, it would quickly add up to something significant.  Every donation matters.

 

Thanks everyone!

Encouragement?

I had something cross my mind this morning that I hadn’t really thought about before. Then I felt the Lord nudging me to share it here.  Perhaps He plans to use this as a little encouragement to someone out there?!?!

 

For most of my life, I was pretty much petrified of needles.  And the sight of blood.  I would nearly pass out at the sight of either.

 

I recall many occasions when I had to sit down and breathe deeply because I saw someone’s blood.  Seriously.

 

One time my little brother cut his hand with a pocket knife.  I accompanied him to the doctor’s office.  I still vividly recall my sweating palms, weak knees, and swirling head.  I recall a nurse telling me to sit in a chair, and helping me to that chair--outside of the examining room so I could avoid fainting due to the sight of the blood.

 

I also recall trying to be the brave sister when my older brother would lock himself in the bathroom, or in the car, when he knew he had to get a shot, whether it be due to immunizations or penicillin.  I stayed with him on more than one occasion, for moral support, but really it was because I feared the needle as much as he did.

 

I recall my first pregnancy, the utter shock when they said they’d have to take blood at the first appointment.  Oh.  My.  Goodness.  NO!!!  Being pregnant didn’t have to involve needles, did it?!?!

 

I recall praying and believing that God would never give me a medically fragile child because I wouldn’t be able to stay in the examination room for any check-ups, and I surely wouldn’t be able to go near an operating room, ER, or hospital.  Gosh, I didn’t even think about immunizations in a healthy child and how that would involve needles!!! 

 

Well, the part of this story that I felt God might use as some encouragement is that I no longer fear needles.  Or blood.  Or OR’s, ER’s, or hospitals.  In fact, I can help guide a needle to draw blood when a nurse can’t get it in a particular child’s vein (mainly because I know certain veins in certain kids and which veins roll and which veins are at a particular angle, which veins require deep pressure and which ones require light, just because I’ve watched so many blood draws…and attempts at blood draws).

 

And God has sent me several medically fragile/needy children to care for, even when I prayed and believed He’d never ask me to do that because there was simply NO WAY *I* could do it.

 

The truth is, *I* could NOT do it, but God could.  It wasn’t like I woke up one day and realized that I was healed of my phobias.  And it wasn’t like I waited for God to heal me before I said YES to caring for a medically needy child.  Nope, it was all part of God’s process.  My obedience, despite my fear, and His healing, despite the timing.  It would all work out for His glory, His plan, His timing.

 

I cannot even count the number of ER visits, OR visits, medical procedures, days spent in the hospital beside a kiddo (or my hubby), nor do any of the procedures bother me in the slightest.  This is not because *I* made this decision, it’s because God did.  I had nothing to do with it but to obey whatever God asked of me, despite my fear or feelings of how I could never do so and so or such and such!

 

I pray someone will be encouraged by this today.  Be encouraged to obey, even if all of the fears and kinks haven’t been worked out.  If God leads you into something, He’s going to lead you through it.  He will never leave you or forsake you.  He might even bring you to a place you never thought you could go.  The truth is that *we* can’t go most places on our own, but with God, all things are possible.

 

Trust.

 

Believe.

 

Obey.

 

See.