Dear Family & Friends,
The last time my Mom sent an update was the end of May, and so much has happened, that she wanted to catch you all up.
So many of your prayers have been answered!!
· Joe no longer has the eye spasms, so his blue eyes are open normally all the time…and without any medical intervention!
· He swallows almost normally, and no longer needs all his liquids thickened. That not only saves money, but can you imagine thickened water? How about thickened coffee? But most importantly it is a sign of healing of his swallow mechanism.
· Ethan, Joe’s almost 3 year old son, has been visiting for the past 2 months and that has been a blessing for them both. (and for Pop and Grandma also)
· The Motomed arrived a month ago and Joe has been progressing on it. At first he would pedal about 5 minutes passively, which meant the machine would do the work. But he’s progressed to the point that he can bike 10 minutes, 9 ½ minutes on his own power, at least when he is not having spasms, which do interfere.
· He had the laryngoplasty to plump up his vocal cords. He has since been more vocal (phonating) especially when he laughs out loud and we can hear his voiceJ He says some words louder, and trying to say a few more. We are hoping the sound of his voice will trigger neurons in his brain which will help him speak more.
And finally we asked you to pray that Joe would be accepted into the Shepherd Center in Atlanta, but the Lord had a better plan. He was accepted into the Kennedy Krieger Institute, associated with Johns Hopkins in Baltimore, for intense PT/OT. They specialize in the type of Encephalopathy that Joe has. And we will be going the end of September to early October.
So you can see how the Lord has blessed Joe and how he has answered your prayers…thank you Lord!!There have been a few other developments also.
In September, Joe will be evaluated at the U. of Montevallo, here in Alabama, for possible entry into their speech therapy program for the winter Semester. You see, after Joe goes to KKI/JH in Baltimore for 2 weeks, he will not have a single therapy left covered by insurance. The Communication Science Dept. of the U. of V. has a speech graduate program and they accept certain folks for free speech therapy, if he fits into their study. He will be with graduate students under the supervision of professors, and he could get 2-3 ST’s a week. Please pray he is accepted into that program.
Also, his neurologist has tried different forms/doses of steroid therapy in the last 3 months, IV and oral. Although there have been some side effects, much of his progress has occurred after this. So we have to weigh the negatives of lowered resistance vs. inflammation in his brain possibly causing more damage. It was a difficult decision, and we pray we made the right one. It is always subject to adjusting. For example, oral therapy didn’t seem to help as much as IV. So the doctor is going to try IV steroids once a month, reducing to the lowest dose that helps. Right now, every time he gets it, there are some lasting good effects, as well as short term. The spasms he gets in his left leg ease up for about 3 weeks, then slowly come back. Please pray that we are able to find the best steroid dose for him with the least amount of side effects, such as diabetes. He is in the middle of a course right now. Pray that the spasms go away permanently!!
And finally we have come to realize that the van that was purchased for Joe last year (we were not involved with that decision) was not the best fit for Joe. He needs a van where he can be wheeled up a ramp and remain in his WC in the car, rather than being transferred in and out of a bucket seat constantly. The current van has been very helpful locally, though we had to put in a couple thousand to correct some problems (new brakes, battery, tires). However it has been a blessing at this point in time and runs great! If you know anyone who might like it, let us know and we will send the stats & photos. We have the original seats which can be converted back. This type of conversion has an electric valet seat that comes down to the ground, to help a person who has difficulty climbing into the van. And it has an electric lift that comes down in the back to stow a WC. It’s a great van for the right person and we are selling at a loss ($6000). We can use that money toward the new one.
We are currently trying very hard to find one that we can afford, and is either new, or maybe a year or two old. They run between $48,000 for chassis and conversion (the cheapest) up to $70,000. We have to get the cheapest which is a Dodge Caravan. Whatever van the Lord allows us to get will be a great blessing!! We need it in our possession by 9/17 so that we can take it to Baltimore. Rose sold her Honda to help with a down payment, and when we finally find one, we will get 10 year financing. Our expenses are overwhelming and we can barely add another, but we really have no choice. It will be something that will help Joe’s quality of life for many, many years to come. Please pray for this.
Finally let me say how much Joe has been a blessing in our lives. He wakes up laughing and goes to sleep laughing. I once thanked the Lord for giving him this gift, and He said to me. “I didn’t just give him this gift. I restored it.” Then I remembered what a happy disposition Joe had in his first 5 years of life, before one illness after another hit him, and the accompanying crosses and difficulties that they brought into his life. Thank you Lord for restoring his gift of laughter!
On Joe’s 35th BD, his friends at EWTN had an Italian pot luck lunch for Joe at work. He had a great time! It was his first time back and we all had such fun. Occasionally they come and visit and he really loves it.
Well, we think we may have overstayed our welcomeJ Thank you for listening and always being there for us. You have all been so generous! A special thank you to all the ladies of the Holy Family Ladies Guild & the wonderful parishioners of our HHI parish, who this last May raised $3000 for Joe at their cake sale!! Must have been gold in those cupcakes! LOL! We couldn’t believe it when the check came in the mail. Thank you from the bottom of our hearts.
John & Rose
P.S. Please forward this to anyone who might be interested. If anyone would like to be on our mailing list, please send their email address. Forgive us if we forgot anyone. It’s hard to keep track but we will try to get the word out
Joe is really making strides with the new Motomed machine you all funded! Today he pedaled .35 miles on his own power in 7.75 minutes! This is about 5 blocks. We could not have afforded this machine without your help and support! Thank You!
Joe had his EWTN work reunion this week! It was long overdue! He missed everyone so much! We want to thank all his friends who have been so supportive of Joe over the past year and a half!
While we reached our initial fundraising goal last week, we remain very aware that the level of need for Joe is ongoing. Currently we are grappling with the used van that was purchased when Joe first became sick. Here's the problem with the current van...
Right now, Joe has a 13 year old conversion minivan. We’re happy to have it for quick trips, but it takes almost 45 minutes in total, at the beginning, middle, and end of the trip, to load Joe and his wheelchair in and out. We have to wheel him out to the car, remove him from the wheelchair, place him in a seat that doesn’t allow for his braces (and hope he doesn’t have spasms), while partially disassembling his wheel chair in order to fit it in the back of the van via a ramp. Joe has a custom fit wheelchair and it does not fold. This process is repeated when we arrive at our destination, and then twice more before he gets home.
In the near future, we hope to take him on longer trips; but wouldn’t dare with the current system. It also doesn’t allow for the possibility to change his brief, since he cannot yet use restrooms.
So we will most likely sell the existing van and use that for the deposit on a new suitable van for Joe. Options for various vans run from $30,000 to $60,000 depending on age of van and conversion build out.
Once again, please share this current need and as always we than you for your generosity! The Pascale's
Today, a single donor, gave the difference of what was needed to reach our $10,000 spring campaign goal! All we know is he was a man who was a survivor of spinal meningitis at age 7, 65 years ago today! As always, the goal is flexible in that donations can still be made! We are most grateful for your incredible generosity!
Joe Update: Joe finished all his treatments for the possible "HE " diagnosis but since that didn't show any marked improvements, he most likely will remain with the long standing ADEM diagnosis. In spite of his generally closed eyes, he is a doing well. Here he enjoying an afternoon with Dad! Thank You and Happy Memorial Day weekend!
HE Update: Joe tolerated his 5 day course of steroid injections to treat potential Hashimotos Encephalitis relatively well. The side effects included some agitation and frustration. He continues to desperately try and speak to us. That remains his biggest problem. Once again, we thank you for your support!
Slight Change of Plans! During the routine pre-op exam for Joe's planned larynx procedure, one of Joe's neurologists revealed Joe may have Hashimotos Encephalitis. "HE" is an incurable but treatable autoimmune disorder. It is treated with a 5 day course of steroid injections . Various degrees of improvement can occur. We will report back next week on how it goes. So please add this to your prayer list!
Special Intention: Joe is going to have a procedure today to repair his vocal chords which we hope will make it more possible for him to speak! Please Pray it goes well and is successful!
Joe continues to have small victories with a few set backs too. Some good news: His left leg spasms have alleviated enough that we were able to take his leg brace off. But his eyes have been giving him trouble. He has developed what might be optical neuritis. His eyes hurt and he tends to keep them closed for much of the day. So please pray his optic nerve can heal! As always, thank you! #TGIF
Wow! What a night it was in Alabama! Mom, Dad & Joe were on high alert during several tornado warnings! We are reporting that all are safe! Prayers for those affected and thank you for all your generosity! Please share! The Pascale Family
With your generosity, we have raised $7075 with 60 people in 24 days! We are 70% to our goal! Thank you and have a great weekend! The Pascale Family
Yesterday, Joe took his 2nd trip in the van! It was to a local park near the house. We thank for helping us make these trips possible! Share the joy!
Joe all smiles at the park!
Dad & Joe hanging out at the park.
After a weekend over-night at UAB for some needed medical tests, Joe, Mom & Dad took their first adventure to a favorite Chinese restaurant near their house in the now repaired, modified wheel chair van! Enjoy some pics which are the fruits of your donations as well! http://www.gofundme.com/7y4g78
Joe on his first van outing!
Joe's modified van
In just 14 days, we have raised over $6000 towards Joe's care costs! Once again, we thank you and ask you to please share with your friends!
Joe's Buckeye Van is back! Joe's wheel chair accessible van had some mechanical issues recently and received needed repairs at Mobility Works, who repair and sell specialized handicap vehicles. Joe has not been able to use the van since last fall due to that regression he had and at the recommendation of his doctors who did not want him away from the home while his immune system was weakened. One discovery we made is that the van needs a few modifications to accommodate Joe's need to extend his legs while he wears a brace. So some altercations are needed. The repairs and special bracing will run just under a $1000. Just wanted to share one of the many costs that YOU helped us with by your donations! We are grateful for all your help! Thank You! Joe's Family!
Joe's Buckeye Van is back! Thank You!
We continue to say Thanks!! In the past 9 days, Joe has received over $5000 in donations towards his care! Here's a picture taken by the family photographer, John Pascale on our visit in March.
Downtown walk in Hoover, AL
Here's a shot of Mom, Dad & Joe in their home in Alabama! With your help and support we have raised $3465 in just over 1 week. Thank You!
Our pic of the day taken by Jennifer Pascale! Please share with your contact lists! Dave & Family
Our "pic of the "day"! by taken by Jen.
JOE'S STORY: On Christmas Day 2012, Joe was home with his family with what appeared to be the flu and a nasty sinus infection. Within a few days he rapidly became worse and on the morning of 12/29/12 was found unresponsive and rushed to the Brookwood Medical Center in Birmingham, AL where he was treated for encephalitis and spent the next 3 weeks in ICU/SICU. After a myriad of blood tests, EEGS, CT Scans, MRI's and brain biopsy's, the etiology of Joe's illness was still unclear. Untimately, Joe was diagnosed with ADEM, (Acute Disseminated Encephalomyelitis) a rare form of encephalitis that can be recurring and on going and include lessions, scaring and damage inside the brain. ADEM is also similar to MS, in that the myelin sheaths of the brain erode exposing the nerve fibers, impeding nerve conduction and therefore inhibiting many of his body's physical systems. After 2 months at Brookwood hospital, he was eventually released to his home to receive care there. For several months that seemed to work but then Joe plateaued and began to decline, lose weight and regress. Then an opportunity arose to admit Joe to the "SPAIN" rehab cebter, a devision of UAB! With the advanced therapy options there, Joe once again began slowly to improve. After some months there, the decision was made to bring Joe home to my parents who reside in a small one story suitable house in the area. Since November 2013, my parents have been his full time care givers. The on going, out of pocket cost for Joe's care runs my parents about $2500 per week or $130,000 per year. And in order for him to improve some very unique, special and expensive equipment and procedures are needed! One such unit is on his current wish list. It's called the Motomed Viva 2 light. It offers active, passive, resistive and symmetrical training for his damaged nerves and muscles. The other big isue Joe has, is it is nearly impossible for Joe to vocally communicate. Aside from the neurological factors for this, Joe's lengthy tracheostomy caused his vocal chords to grow apart and no longer touch each other. He is scheduled to have a procedure in June to correct this. It's hard to put a firm number on our fundraising goal since it's clear Joseph may need a costly level of care for the rest of his life. So from time to time we may amend or create new goals for his fundraising depending on a changing set of needs.We can't thank you enough as we go through this journey that has been placed before us. We remain, joyful, prayerful, positive and confident as a family. Thank You! The entire Pascale Family...