Category Archives: Periventricular leukomalacia (PVL)

PICTURES

I have so many pictures to share with everyone.  We’ve been trying to pack in end of summer fun and all our “to-do” list before school starts for Deeds and mommy.  I’ll start with pictures from going bowling with the kids today.  Just check out the captions to get all the fun info.

Magpie watching the kids while they bowl.

Sometimes Deeds ball would go so slowly he would just lay down to watch it. Good thing it wasn’t crowded at all.

Gwen is watching for her ball to come up with Deeds plays.

Here are some random pic’s from the last week:

Deeds loves having Magpie sit in the back seat of daddy’s car with him.

Well don’t they look comfortable.

Deeds helping make his favorite peanut butter cookies.

Watching donuts being made.

These kids take eating donuts very seriously. I could tell it’s been a while since they have had one by their intensity.

He actually posed like this. Couldn’t get another picture of him without out half a bite in his mouth.

Sweet Dreams

 

 

 

 

 

 

 

 

 

 

 

 

 


Deeds and Magpie in the News

Jeremy was walking out to the car with the kids tonight when Deeds took a tumble and fell face first on the driveway.  When he got inside to me he was covered in blood and after cleaning off most of his face I realized the front four teeth were shoved up into his gums so it looked like he was teething.  He was screaming and bleeding so badly we took him right into the ER.  Now I know that the ER really can’t do anything about teeth.  They told us to follow-up with a pediatric dentist tomorrow to make sure he didn’t damage the adult teeth since the baby ones went so far up.  They also told us that they would probably just “drop back down.”

Magpie was FANTASTIC at the ER.  Deeds was so calm and she just laid down on the bed with him and he calmed right down.  Made this mommy a happy camper that she was able to make him comfortable.

We missed the first part of the news story on TV but we had set it to record so we caught it after all the commotion and then watched the second segment.  We can’t embed the video’s on this blog but here are the links for those of you that might have missed it, or the many of you that are out-of-state.

First segment of the Deeds and Magpie news story

Second segment of the news story

Thank you all again.  I’m so glad you get to see Magpie in action.  So many of you have been with us since day one a year ago and helped us every step of the way.  We feel like you are all family and we are eternally grateful for your love.


Just another day at the Mad House

This morning we had a reporter and cameraman spend some time with us for a story Fox 13 is running next Thursday at 9pm about Deeds and Magpie.  Since we just got home our house was a disaster.  I feel like we just had our 3rd child and I’m slow to adapt.  Thank goodness Jeremy helped pick up last night before they came to film and then mom came before they got here to help.  Deeds was an angel and LOVED the reporter.

We ran to the store with the camera to get Magpie in action for the story.  She even did a small track in the store and found Deeds with no problem once she caught his scent.  First time we’ve practiced in a store out here and it was on camera so I was a bit worried.  I didn’t prepare to be interviewed (or I might have at least put on make-up) and thought they would just be filming Deeds and Magpie.  Hopefully I answered all their questions without sounding too flustered.

After that Deeds had a doctor appointment and then his social therapy.  Magpie did fantastic all day with the excitement and new environments and I am thrilled because I was a frazzled mama.  I’m sorry I didn’t take any pictures today, every chance I’ve gotten homework has been happening so I didn’t think about taking any till I just sat down to blog.  I’ll throw in an old pic of my little man just because I think most blog posts are more exciting with a picture.  :-)

This is one thing that will happen if you leave Deeds alone at all. He LOVES Bandaids.


My Blue Rose

My grandmother sent me a forward yesterday.  I knew if she was actually passing it along that it would be worth reading.  Five minutes later I was sobbing.  Thank you grandma.  I’m sure some of you have heard this story, but if your like me and haven’t, take a second to read it.  It’s beautiful.  I tried and tried but couldn’t track down the original author.

BLUE ROSE

Having four visiting family members, the wife was very busy, so I offered to go to the store for her to get some needed items, which included light bulbs, paper towels, trash bags, detergent and Clorox. So off I went.

I scurried around the store, gathered up my goodies and headed for the checkout counter, only to be blocked in the narrow aisle by a young man who appeared to be about sixteen-years-old. I wasn’t in a hurry, so I patiently waited for the boy to realize that I was there. This was when he waved his hands excitedly in the air and declared in a loud voice, “Mommy, I’m over here.”

It was obvious now, he was mentally challenged and also startled as he turned and saw me standing so close to him, waiting to squeeze by. His eyes widened and surprise exploded on his face as I said, “Hey Buddy, what’s your name?”

“My name is Denny and I’m shopping with my mother,” he responded proudly.

“Wow,” I said, “that’s a cool name; I wish my name was Denny, but my name is Steve.”

“Steve, like Stevarino?” he asked.

“Yes,” I answered. “How old are you Denny?”

“How old am I now, Mommy?” he asked his mother as she slowly came over from the next aisle. “You’re fifteen-years-old Denny; now be a good boy and let the man pass by.”

I acknowledged her and continued to talk to Denny for several more minutes about summer, bicycles and school. I watched his brown eyes dance with excitement, because he was the center of someone’s attention. He then abruptly turned and headed toward the toy section.

Denny’s mom had a puzzled look on her face and thanked me for taking the time to talk with her son. She told me that most people wouldn’t even look at him, much less talk to him.

I told her that it was my pleasure and then I said something I have no idea where it came from, other than by the prompting of the Holy Spirit. I told her that there are plenty of red, yellow, and pink roses in God’s Garden; however, “Blue Roses” are very rare and should be appreciated for their beauty and distinctiveness. You see, Denny is a Blue Rose and if someone doesn’t stop and smell that rose with their heart and touch that rose with their kindness, then they’ve missed a blessing from God.

She was silent for a second, then with a tear in her eye she asked, “Who are you?”

Without thinking I said, “Oh, I’m probably just a dandelion, but I sure love living in God’s garden.”

She reached out, squeezed my hand and said, “God bless you!” and then I had tears in my eyes.

May I suggest, the next time you see a BLUE ROSE, don’t turn your head and walk off. Take the time to smile and say Hello. Why? Because, by the grace of GOD, this mother or father could be you. This could be your child, grandchild, niece or nephew. What a difference a moment can mean to that person or their family.

From an old dandelion!


PVL and CP

Wednesday afternoon Mom and I took JD up to the Primary Children’s Medical Center (PCMC) building at the Riverton Hospital for Deeds MRI.  He was such a good boy while they were prepping him.  It was amazing the difference in a staff that is used to not only children, but children with special needs.  He didn’t even have to be strapped down for the IV placement.  They had me hold him but it was much smoother than at the ER on Sunday.  The real trouble came with the sedation for the MRI.  It took a while but after maxing him out on three different medications he finally went under.  If he had woken up one more time there was nothing more they could give him and they would have had to cancel the MRI.  The nurse told us afterwords that if he ever has to be put under again for anything to tell the doctors to check his records and ask for general anesthesia.  Once the MRI was done he woke up fairly quickly and was ready to get out of there ASAP.

This morning we met with the Neurologist up at PCMC in Salt Lake.  After two different doctors reviewed his charts, medical history and did a thorough exam on him we were told that the MRI came back abnormal.  Deeds was diagnosed with Periventricular Leukomalacia (PVL) and Mild Cerebral Palsy (CP).  Stunned silence was my first reply.  I thought that they would just come back and say to watch him for more seizures.  I never expected us to leave with two additional diagnoses for JD on top of his autism.  My first question was if the new diagnoses would negate his autism diagnoses and was told in his case the answer was no.  Next I asked about the CP, and if JD would end up in a wheel chair.  I was assured that he should not digress any further with the CP, but that we might start to notice that he isn’t able to accomplish some things others can physically as he gets older.  Like the autism, Cerebral Palsy covers a wide range and Deeds is at the mild end of the roller coaster.

I did a lot of looking online when I got home and feel much more comfortable (or at least not panicked) about the new developments in JD’s life.  The CP diagnosis fits with a lot of the irregularities JD has had since birth.  The rigid muscles, and stiffness.  How he never really crawled but would arch his back and scoot around.  The toe walking and running, and abnormal sensation.  We thought he just wasn’t coordinated but it’s more than just that.  Once again I have to remind myself that he is STILL JD.  The diagnoses doesn’t change who he is.  It means he might need help with somethings that others take for granted.  We are still learning about it, so sorry if I can’t answer many questions.

This all leads us back to the seizures.  The doctor had us keep JD’s EEG appointment in Riverton for this afternoon.  She said she needed to know a bit more about the seizures, like if he was having absence seizures throughout the day.  I called this evening but they were still waiting on the results so I will call again tomorrow if we don’t hear back.  She did teach me how to handle a grand mal or tonic-colonic seizure and reassured me that they all look way worse than they are.  Oddly enough we had a Golden Retriever growing up that had epilepsy, so I had an idea just how frightening they can be.  She said that JD may still be acting “out of it” this week from the episodes he had Sunday but that it is hard to tell because he’s had to go through so much sedation for all the tests.  If JD is having absence seizures then we will need to put him on some medication to try to control them.  If he is not we have opted out of doing medication right now and we’ll see how he does until his next neurology appointment in a couple of months.  Depending on what the EEG says tomorrow we may call the place that we are applying for the service dog from and mention that we might also need the dog to help alert JD of seizures.  If JD is approved that is… still waiting.

I will keep everyone posted on the results of the EEG.  JD is doing well through all this, and he is my brave little boy.  I’m shocked he behaved as well as he did during everything.


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