Mom's in Florida!!!!!

So, that last time I posted, I mentioned Mom's FIRST attempt to fly down to Florida before Ali started Kindergarten. We had booked her flight but then decided to cancel it since it wouldn't have been the best for Mom to have been around Lisa's son, Ryan, who was sick at the time.

Mom hadn't flown in about 23 years which was back when Lisa was involved in an Odyssey of the Mind event in Arizona. Today, Mom went through security and found her gate with no problems so before we know it, she'll be a seasoned traveler! She even made a friend...a woman was behind her in the security line, and somehow Mom discovered this woman was also headed to Lakeland. So they sat near each other at the gate, and the woman even sat next to Mom on the plane...and it's funny since Mom had said, "it would be nice if there was someone I could chat with next to me". Another connection they had is that they are both Christians...not sure how they discovered that...possibly because of the books Mom brought along. So that was just one more little way that God blessed Mom as she traveled today! Mom plans to fly back home on either Saturday or Sunday so Ryan and Ali will have almost a week with their Mom-mom!

Mom wanted to fly down to Lakeland, FL today so she could be with Lisa and the kids while John is in the hospital. For those who weren't aware, Lisa's husband, John, was diagnosed with Meningitis and Gullian Barre Syndrome in late July, and here are the recent updates from Lisa:

(As a follow-up to my post from August, John was able to come home from the hospital BEFORE Ali started Kindergarten which was an answer to prayer!)

Sept. 22
We have hit a little snag in John's recovery process and I wanted to ask you to please pray. It has been 5 weeks since John has been out of the hospital. While he was there for almost a month he made great progress - going from not being able to hardly move his legs while lying in bed- to being able to walk with a walker. He came home and started physical therapy 2-3 times per week. Progress seemed to slow down, even plateau. The end of last week, he was complaining of his legs feeling more tired. Sunday afternoon, he fell twice - having never fallen since being home. Today at PT, John was in the hydrotrack and his legs started to give way - causing an emergency evacuation that got the staff's adrenaline flowing! The doctor at the rehab suspects that John might be experiencing some kind of relapse.

Sept. 23
Last night after the neuro eval, the doctor suggested that the numbness could be caused by something other than the GBS, b/c he has some leg strength and his reflexes are good. There has been another series of back and brain MRI's - but nothing significant has emerged yet. They have started him on a IV steroid treatment, to treat any inflammation that might be contributing to this.

Sept. 24
From the beginning of this - when John was first diagnosed with the Guillain Barre Syndrome (GBS) - it was also told that he had a very atypical presentation. There were some things that didn't add up, but he received the protocol treatment and improved as time went on and he had physical therapy. As he has been evaluated by his neurologist this time, there have been some things that have again not fit the GBS profile - especially hyper-reflexes and good muscle strength. Also - before, his right leg was the weakest - but this time it is his left leg. The neurologist has now narrowed this down to 2 possible new diagnoses, the first of which he is leaning more towards. They are called Multifocal Motor Neuropathy (MNN)http://www.ninds.nih.gov/disorders/multifocal_neuropathy/multifocal_neuropathy.htm and Primary Lateral Sclerosis (PLS)http://www.ninds.nih.gov/disorders/primary_lateral_sclerosis/primary_lateral_sclerosis.htm.He is seeming to think it is the MMN, and will be doing more testing to see. Treatment for the MMN often includes the mmunoglobulin treatments he received when they believed it was GBS. These 2 conditions are rare - so much so that the neurologist has hardly seen any cases. So it is possible we might be reaching out to some more docs in time, possibly at Mayo clinic in Jacksonville, who have more experience. For now, he will be finishing out his steroid treatments, and will be possibly be going to the rehab floor again. There will be some more testing, and we will go from there.

Sept. 28
Nerve study that seemed "good" but keep praying.... increased numbness in his legs and hands compared to last Monday.

So as Lisa requested, please pray for John and the medical staff who is treating him and trying to figure everything out. I also ask that you'd pray for strength for Lisa as well as she continues to her household and her job.

No more port!

Mom's port was removed on Tuesday (sorry I'm late on updating), and the surgery went very well! Since I'm still on summer break, I was able to go up to Hopkins to wait with Dad and also see Mom before/after her surgery. It was good to see Dr. Giuntoli again, a man we are so thankful for!

Mom was asking right after her surgery about the possibility of going down to Florida to visit Lisa and her family, and a day later, we had a flight booked for her. She heads down to Florida this Tuesday and will return the following Saturday. Mom wants some time to visit Ali before she starts Kindergarten on Aug. 24 and also wants to help Lisa while John is continuing physical therapy at the hospital. For those who weren't aware, Lisa's husband, John, has been in the hospital for 2 weeks after he was diagnosed with viral meningitis and Guillian Barre Syndrome which caused him to lose feeling from his chest down. He is doing much better now. He began his therapy with moving himself from the bed to the wheelchair, and most recently he stood with a walker. I know many of you have been faithful with praying for Mom, and if you would please pray for John as well, we'd appreciate it. The doctors have made Aug. 27 the discharge date/goal, but Lisa thinks it will be sooner and prays that it is so John can be home before Ali's first day of Kindergarten.

Thank you for praying for:
-John as he presses on with physical therapy
-Mom's trip down to Florida

Wingate Family Week

UPDATE on Mom

~She gets her port out on Tuesday, August 4. ~

She had visit to the emergency room at Beebe Medical Center in Lewes via the ambulance on Thursday after not feeling like she could get out of bed that morning. Mom said it felt as if there were a force pulling her back down to the bed after she sat up. Tests were done that came back fine so there was no real conclusion as to what caused that feeling. It possibly may have been linked to her blood pressure. She hasn't had that feeling since but has had some slight dizziness.

~Otherwise, she is continuing to recover and rests when she needs to. She has been getting her sense of taste back so she's definitely been enjoying all the many flavors of food again!

On Monday, Lisa's family and I arrived at Mom and Dad's, and the fun began! Mom had fixed lots of yummy dishes for us...throughout the week we had crabcakes, meatloaf, oven-fried chicken, potato salad, broccoli salad, macaroni & cheese, corn on the cob and for dessert....blueberry pie with Breyer's vanilla ice cream and Tandy Cake. Dad also fixed his fabulous blueberry pancakes. Below are some pictures and a VIDEO from the week:

Ryan followed Missy under the table

Ryan lounging on Amigo

Amigo and Ali

Mom and Ryan

Ryan laying on Missy

Dad and Ryan sleeping

Ali and Ryan at the pool

Dad, Ryan, and Missy

Ali and Ryan on Ryan's very FIRST ride!

Lisa, Ali, and Mom at girls' lunch at Harpoon Hannas

Ali eating cotton candy in Ocean City

Ali singing "You Never Let Go" accompanied by John on the piano

(Remember to "pause" the music at the bottom to listen to this video).

Even though I walk through the valley of the shadow of death

Your perfect love is casting out fear

And even when I’m caught in the middle of the storms of this life

I won’t turn back, I know You are near

And I will fear no evil, For my God is with me

And if my God is with me,

Whom then shall I fear? Whom then shall I fear?

Chorus:Oh no, You never let go

Through the calm and through the storm

Oh no, You never let go

In every high and every low

Oh no, You never let go

Lord, You never let go of me

And I can see a light that is coming for the heart that holds on

A glorious light beyond all compare

And there will be an end to these troubles

But until that day comes

We’ll live to know You here on the earth

Yes, I can see a light that is coming for the heart that holds on

And there will be an end to these troubles

But until that day comes

Still I will praise You, still I will praise You

Follow-up appt. at Hopkins today

It's been 2 weeks since the final chemo treatment, and today Mom had a follow-up appointment with Ann Marie and Dr. G.
*It was discussed when Mom will have her port removed which will probably be sometime in July.
*Mom has had some swelling in her feet caused by fluid retention, and there is some therapy for that. They said for now, massaging of her feet will help along with walking short distances.
*Dr. G. ordered a sonogram, and that will be done at Beebe.

In other news, Lisa's family (and I) will be visiting Mom and Dad next Monday (July 6-9) so we're all looking forward to that family time together. I'll be sure to post some pics! I'm sure Ali will be our little photographer again and get lots of great shots!

That's about it...except for one last thing...can you guess what Dad fixed for dinner tonight? It had been quite a while since he fixed his Shepherd's Pie....and he does an EXCELLENT job too...it's quite yummy!

Happy Father's Day!

You've always watched over me, and helped me out,
You truly are the best father, without a doubt.
So today is your day, and I am proud,
You are my father, and I'll say it loud,
You raised me well, I've got to say,
Dad, I Love You, Happy Father's Day!
~Author Unknown


The song below was the song my dad and I danced to on my wedding day nearly 8 yrs. ago!



Father's Love by Bob Carlisle

Three feet tall and full of questions
You must have thought I was the smartest man alive
I didn't always have the answers
To every little how and where and why

Like Daddy, why's the sky so blue today?
Does Jesus really hear me when I pray?
When I grow up, will I be just like you?
Will I be tall and strong and brave?

CHORUS(1):
There is no power on earth like your fathers' love
So big and so strong as your father's love
A promise that's sacred, a promise from heaven above
No matter where you go... always know
You can depend on your father's love

Especially when it's cold, especially when you're lonely
When your little heart is lost trying to find it's way
I know the world is always changing
But, remember that some things never change

And even when my life on earth is through
There will still be a part of me in you
'Cause some things are forever
Nothing's ever gonna take my love from you

CHORUS(2):
There is no power on earth like your father's love
So big and so strong as your father's love
A promise that's sacred, a promise from heaven above
Did I hug enough, did I care enough
When you most needed me, Was I there enough
Enough to make you feel the power of Your father's love

Plugging on!

Mom continues to do well...she was told it would take about a month for her to feel more normal and for all the side effects to go away so she's being patient. She looks forward to her digestion being back to normal, getting her taste buds back, feeling more energy, and taking less medications.

This past week, Mom was called and asked to do the scripture reading at church on Sunday, and she said "yes" so she and Dad will have the opportunity to stand together and read from God's Word which is so full of His promises to us. This Sunday is special for that reason and also because it is Father's Day....and because it the FIRST Sunday service back in the main sanctuary (mold now removed)...and because the area bishop will be in attendance!

School is out now which means I'm able to visit Mom and Dad during the week now, and Dad has a break from his school bus route but is staying plenty busy with his lawnmowing (especially with ALL the rain we've been having). On Thursday night, we enjoyed our annual crab feast....we decided to try the new Old Mill Crabhouse (at an old Dough Roller location).

So Much in Love

Know that song by the Tymes? If not, click the video below to hear it! This song was sung to Mom and Dad this past week by one of the security guards at Hopkins when he saw them holding hands. The guard continued to sing even after Mom and stepped into the elevator!

In the elevator, there were 2 women, and one woman said, "I'm hatin' you!" when she saw Mom and Dad holding hands. Then she clarified and said, "you might not know that lingo so what I meant is "I'm jealous"!" HA!

On Tuesday, Mom fixed a meal and had friends over for dinner. Wednesday was her treatment, and then she had more energy on Thurs. and Fri. so she fixed some white chicken chili and her chocolate pie dessert. Mom can't really taste the dishes she makes, and we're hoping it doesn't take long for her taste buds to return after her last chemo. treatment so she can enjoy food again.

Two weeks from the last treatment is when Mom will go back to see Dr. G and find out how she will be monitored over the next months.