Jack of Our Hearts

Good news!

2012-01-09T13:39:00.003-05:00

Just a short note to let all of you know that Jack will be coming home from the hospital on January 27th! We are so excited to have him home again. It's been quite an adventure.

Jack and the hospital

2011-11-15T12:47:00.009-05:00

For those of you that may not know, Jack is in a highly specialized children's hospital in Virginia.

We have been private about this because it's a hard thing to try to explain to people that Jack's behavior is not always within his control. Actually, much of it is not his fault.

When you talk and interact with him, he seems just so completely normal. Family and close friends, including Eliot and I, have a very hard time figuring out what is misbehavior and impulse control issues related to his traumatic brain injury.

I will admit to being defensive about this at times. Here are the medical facts pertaining to Jack's brain:

He was shaken at about 19 1/2 months, had brain surgery and suffered 4 strokes.

The damage to his brain destroyed almost the entire left half of his brain. He also has damage to the hypothalamus in the right side. This area contributes to our impulse control.

Jack's seizures started a week before his third birthday and escalated until the difficult decision to permanently separated his brain hemispheres was made.

He had his hemispherectomy on June the 2nd at Duke Hospital. A small portion of his right frontal lobe had to be removed to allow for the separation. This area controls executive function, which is crucial for maintaining self control.

Jack spent months trying to recover from surgery, but we have noticed his processing speed is slower, so he gets frustrated easier. School work makes him shut down and get combative with his teachers.

As Eliot has blogged, this past summer was just awful. Bedtime became a huge issue and he hit and scratched us most nights. Fatigue always makes his behavior worse, so as evening came, everything became a battle.

By the end of September when I took him to see our rehab doctor, he was fighting me on most everything and was out of control in her office. Dr. Wunderlich made a referral to the children's hospital in Virginia, where we took him right after Jake's wedding.

I can tell you that it has been heartbreaking for all of us. He desperately wants to come home and we just miss him so. We visit him every two weeks for a weekend. The drive is very long.
It feels rather like prison when we are there. All the units are locked and you can't get out without a key either. Jack is on the acute ward with children with disabilities and other medical issues.

All the kids have an illness or injury with a behavior component. The staff ratio on his unit is two to one. An RN and behavior specialists care for and redirect the kids.

Jack is actually one of the easier patients to deal with, according to the staff. Some of the kids walk around yelling and cussing. One boy talks very little, but thrashes about on his bed yelling strange sounds.

One of the teenage girls with diabetes looks out for Jack and all the other kids. She has issues too of course, but is so very kind and just loves monkey.

It is just a weird place. I can't really describe what it's like. I can tell you that we were shocked at first. Our last visit was much better though. The staff are very good with the kids. We of course hope Jack gets better quickly.

He has received cards from many of our friends and it boosts his spirits. If we know you and you would like his address, please let me know.

I would appreciate your thoughts and prayers for Jack and our family as we go through this very difficult time. He may be there until at least February. We will be with him for all the holidays and continue to visit every other weekend.

The hope is that the hospital staff can teach Jack coping skills and improve his frustration related behavior and impulse control issues. We can hardly wait to have him home. Eliot and I don't like having an empty nest.

Joy and Pain

2011-10-18T18:54:00.005-04:00

Well, as they say...life has its ups and downs but you don't usually experience them in a single weekend.

First the Joy...

Jake and Nat got married near Waynesville, NC on Saturday. It was a picture perfect wedding and we all had a wonderful time with friends and family. Jack was the life of the party as we would expect, even playing DJ for a while.

The setting was spectacular; on top of a mountain in a beautiful house. Nat looked stunning in her wedding dress and was so cute when they were pronounced "husband and wife" that she bounced up and down with excitement. She and Jake are perfect for each other and we only wish them the best that life has to offer.

The wedding party

Now the hard part...

On Sunday, after the wedding, Lisa, Jack and I headed on a lengthy trip to Virginia to take Jack to a special hospital that will help him with his behavior problems. As many of you know and have experienced first hand, Jack is usually a very sweet boy but sometimes, he can be violent, especially with people he is close to. After a very strenuous summer and a referral from the neurologist, we decided to place Jack in this facility.

Jack will stay there for some time as he is evaluated and a plan is determined on how best to treat his issues. We know very little at this point on how long he will be there and exactly what this will entail.

Needless to say, it was very painful to leave him there. As a parent, you have mixed feelings of relief and guilt.

We did talk to Jack tonight and he is adjusting very well. Probably better then Mom and Dad. We will keep you all up to date on his progress.

Please continue to pray for Jack in his recovery.

Rough summer

2011-08-23T20:28:00.002-04:00

As many of you know it's been a rough summer for Jack, Lisa and I. We have been continuously fighting behavior issues with Jack for a very long time. Jack's behavior, often violent, has made

almost every day a challenge for us.

We returned to see Jack's Charlotte neurologist today and she has recommended several medicine changes. We surely hope this has a positive effect on Jack.

Please continue to keep Jack and all of us in your prayers as we struggle through this trying time.

Kris and Shannon's wedding

2011-06-02T11:17:00.006-04:00

May sure has been a busy month for us. Kris and Shannon's wedding was at North Topsail Beach on the 23rd and many people stayed on for most of the week. Lisa, Jack and I stayed until Saturday.

It was the most beautiful wedding I have ever seen. Most everything went off without a hitch. The wedding was on the beach and we had perfect weather all week. The only rain came when we were pulling out of the driveway to come home.

Kris and Shannon had rented two huge houses, about 10 houses apart, each with its own elevator. We could not have survived the week without those elevators.

The newlyweds are now in Rome and leave for a 14 day Mediterranean cruise. Kris starts his residency at Johns Hopkins later this month.

Enjoy the pictures.

Shannon and her mother, Karen

The groom and his parents

Shannon's brother Zach and Jack

Rehearsal on the beach

The Swiger men just before the wedding ceremony

Nat and Jake...you guys are next!

A very proud momma with her two older boys

A picture perfect wedding

Lonnie, Jack and Aunt Jo

Mary and Andy, the groom's grandparents

Carolyn, Jessica, Kurt and Daniel (sorry Meghan)

The happy couple at the reception

Jack was awesome on the dance floor

On their way

A view of the beach where the wedding was held

Introducing Dr. Kristopher J. Swiger

2011-05-20T16:33:00.004-04:00

Hard to believe but we have a doctor in the family. Kris graduated from UNC School of Medicine on May 7th in Chapel Hill. Kris will start his residency at Johns Hopkins Hospital in Baltimore in June.

Kris and Shannon have moved to Baltimore and will return this week to prepare for their wedding on May 23rd.

It's difficult to express how proud we are of Kris and what he has accomplished. Ever since he entered UNC as an undergrad he has excelled beyond anyone's imagination. And now, he will be a resident at one of the most prestigious hospitals in the world. He will be there 3 years then who knows what after that!

Congratulations again to Kris on a job well done.

And thanks in advance for the free medical advice.

Easter in Virginia

2011-05-01T10:24:00.004-04:00

We had a wonderful trip to Virginia for Easter. Our older boys were there, minus fiances unfortunately. Mom and Dad's property was in full bloom and was just spectacular.

And the Easter bunny found us too.

This is big month for us as Kris graduates from UNC medical school on May 7th. He and Shannon then move to Baltimore and return for their wedding at Topsail Beach on May 23rd. Kris starts his residency at Johns Hopskins on June 20th.

Enjoy the pictures....

Jake enjoying his mimosa as Jack discovers what EB left.

Mom, Dad and Kris

Been so long

2011-02-26T15:07:00.002-05:00

It's been so long since I last blogged that I am so embarrassed. But, there has not been a lot to report either. Jack is doing well in school. We've had some behavior issues to deal with and an adjustment in medication seems to have made that better. We believe the behavior stems from the brain injury. Research on the internet and talking with experts seems to confirm that.

Other than that, there hasn't been much going on. We are preparing for two weddings this year. Our older boys, Kris and Jake, will be getting married. We love our new daughters-in-law and I know Lisa will be happy to have a few more souls on her side....other than the female dogs of course. What can I say? It's a boy family.

Hopefully it won't be so long for the next post. Someone has a milestone birthday next month so maybe there will be pictures for that event.

Thanksgiving in the NC mountains

2010-12-11T07:31:00.003-05:00

We had a great trip to the mountains in McDowell County, NC for Thanksgiving. All the kids came and it was a very restful and relaxing weekend. It was nice to get away for a while.

Enjoy the pictures......

Halloween

2010-11-06T09:22:00.004-04:00

Jack had a great time at Halloween. We trudged over much of the neighborhood taking in as much candy as they could dish out. Halloween has always been so much fun with our neighbors as the adults use it as a means to socialize. Jack dressed as Woody from Toy Story. He kept saying "There's a snake in my boot" all night long.

Jack continues to improve both from an emotional and physical standpoint. We are really pushing the walking and I think he is starting to accept this as his primary means of getting around. He was playing on his computer the other day, which by the way, on which he is requiring less and less guidance, and he decided to get off the chair and head in the living room to watch tv. He did this all without talking about it or asking for help or anything. He is starting to discover his independence and it is a cool thing to see.

I posted some pictures of Halloween below.

Jack's progress

2010-10-14T15:14:00.002-04:00

Wow. Can't believe it's been over a month since the last update. I will definitely try to do better in the future.

The good news is that Jack has been improving the last few weeks in terms of emotional stability as well as his mobility. He is much less fussy than he was after the surgery and he doesn't wake up crying any more. He also is gaining strength in his legs. Lisa and I kind of layed down the law that he wasn't going to be allowed to scoot around anymore. We are making him walk everywhere including upstairs.

He actually was due to participate in a race today at the school but it was cancelled due to the weather. He has been using a walker at school (instead of the motorized wheelchair) and really moves quite quickly in it. It is great exercise for his legs.

We go back to see the Duke doctors in a couple weeks.

The next big task: potty training him. We have attempted this several times with little success so if anyone has any ideas, don't keep them to yourself.

Bye for now.

Labor Day

2010-09-13T21:08:00.004-04:00

Jack is still experiencing extreme fussiness and it doesn't seem to be getting any better. He is still struggling in school. We will be seeing his neurologist soon and will discuss options at that point. We're hoping he seems some relief soon as he is often not feeling well.

We had quick trip up to the Motherland (Ohio) over Labor Day to visit with Lisa's Aunt Dottie and her sister, Jo, in Ohio. It was a short, but very enjoyable trip. Here are some pictures.

Jack, Caylie and I on Aunt Dottie's porch

Caylie, wondering why she was tied to a post

Jack and his Great Aunt Dottie

Jack and Aunt Jolene

Jack and Scrappy getting ready for a ride in the Polaris

Scrappy decided that he liked Jack a lot

Jack got to take a ride with Aunt Jo

August happenings...

2010-08-31T21:46:00.005-04:00

We wanted to share some memorable August events with you but also give everyone an update on how Jack is doing.

Jack has begun 2nd grade and is doing well. He has had one tough day so far but otherwise is faring pretty well. He continues to break down emotionally over little things that didn't use to bother him but I believe is beginning to understand that he can control that. If it continues or gets worse, we will talk to his neurologist about it. His new elementary school, Patriots, is great and they have been very supportive of Jack and we feel very confident that he will have a very good year.

Now, for some pictures....

Mom and Dad came to visit and Jack enjoys a little lap time while Grampy reads the comics.

1st day of 2nd grade!

with appropriate attire

Kris and Shannon's moving day. A sad day for us as Kris moves back to Chapel Hill for his 4th year of med school.

Moving that dadgum treadmill again. I thought that's why I gave it away?

Kris and Jack making their way to the big truck.

Kris and Jack

Jack ready to drive the big U-Haul

A "vacation day" for us as we took Jack to Discovery Place

I swear this child has talent on the drums although I'm not sure we want to promote this. He could be the most famous one-armed drummer of all time.

Jack got to visit with a very large iguana

Summertime....

2010-08-16T17:18:00.005-04:00

This summer was unusual in that we didn't have much of an opportunity to have fun. But, with a successful surgery for Jack behind us, we wanted to share a little bit of fun we did have.

Maggie celebrating the 4th (she's thrilled)

Kasi and Shannon singing along with Jack

"We like to move it move it"

Kris lighting a sparkler... CAYLIE wanting to eat the sparkler

Celebrating on the deck

Soon to be newlyweds

A poster from Jack's classmates wishing him well

Another poster from the Criders wishing Jack well

Busy time of year

2010-08-15T09:42:00.002-04:00

Sorry it's been so long since our last update but this has been a very busy time for us. I've been doing some traveling for business and Lisa has been taking Jack to a lot of therapy appointments before school starts.

Jack is doing pretty well but remains very fussy most of the time. The hallucinations have pretty much dissipated as best we can tell but he wakes crying most mornings and abruptly changes emotions frequently.

We are concerned about him starting 2nd grade with this going on but we are meeting with school administration and his 2nd grade teacher tomorrow to discuss the upcoming year. We feel confident that they will keep his best interests at heart.

We recently celebrated Shannon's birthday. Here are a couple pictures from her and Kris's visit.

Update on Jack

2010-07-26T12:18:00.003-04:00

Not much to report on Jack. I'm home from NY finally but Lisa says that he's about the same. Still having hallucinations. He's still not experienced any seizures but the hallucinations are puzzling. They are not very severe and he can be easily diverted from them.

Otherwise, he is eating and sleeping well and generally in a good frame of mind.

Follow-up visits

2010-07-16T06:50:00.002-04:00

We were at Duke yesterday for our follow-up visits with the neurosurgeon and neurologist. Jack also had an EEG done.

The neurosurgeon was very impressed with how well Jack is doing physically. Jack walked a few steps for him and he thought he looked real good considering his surgery was just last month.

We discussed the hallucinations with both doctors and neither really knows the cause of them. The neurologist speculated that it could be something similar to "forced normalization" where the brain reacts to the stoppage of seizures by producing a psychosis or vice versa. He also said it could be just the brain re-balancing from all the trauma of the surgery, the different medicines, etc. He was optimistic that it is a temporary thing and that he should continue to improve.

We also discussed the results of the EEG. His right side looks normal, i.e. no seizures. And interestingly, he can still see the seizures firing away on the left but since the disconnections were made, there's no manifestations of them. Pretty amazing.

And of course, the best part of all, still no seizures since June 2nd. So, we will continue on the one medication for now and hope that the hallucinations subside soon.

Well, we got home late last night, around 8:30. I am packing and heading for NY for 10 days on business. We will talk to you all soon.

Jack is improving

2010-07-07T20:49:00.002-04:00

Jack seems to be improving each day as he didn't appear to have any hallucinations today at all. He actually slept 16 hours last night! He complained of a headache tonight but other than that had a very good day. He even did some walking for Mom this afternoon.

Jack is now on only one medication; an anti-seizure med that he has been taking for many months and tolerates well. All other meds were stopped earlier this week. This is pretty amazing considering he was on as many as 6 or 7 at a time at one point.

We're hopeful that he is on the road to a complete recovery.

Jack still under the weather

2010-07-05T08:04:00.003-04:00

While it is wonderful to be home, Jack is still feeling under the weather. The hallucinations have returned and he is fussier than ever. We are hoping that all this is medicine related but we will need to contact the neurologist to see what's going on.

Home (finally) and thank-yous to everyone!

2010-07-03T10:30:00.000-04:00

Now that Jack is finally home after being away for over a month, we would like to make

somewhat of an attempt to thank everyone for all they have done for us. While it would be

futile to try to list all the names of everyone, we can at least list all the different and amazing WAYS that people have helped us.

So, thank you to all our family, friends, neighbors, work colleagues and church for the tremendous support.

Here we go:

prayers
phone calls
emails
Facebook posts
meals
innumerable cards, toys, books, balloons, silly bands, movies and stuffed animals
two signed letters from famous people: E. Gordan Gee, President of the Ohio State University and Bill Conley, Head football coach at Ohio Dominican University
many, many hospital visits
gift baskets for our trip to Duke Hospital which included snacks, drinks, toys, books, Visa gift cards and a restaurant gift card
donations to paws4people
money for dog food for CAYLIE
babysitting Jack so Lisa and I could go out to eat
staying overnight with Jack so Lisa and I could get a break together
mowing our lawn for us while we were away
cleaning our house for us while we were away
a Sony eReader that allows you to download and store books electronically

A special thanks to all the doctors and nurses at Duke Hospital that took such great care

of Jack while we were there, especially Dr. Gerald Grant.

A VERY special thanks to the nurses and therapists on 4th floor Levine that have always taken such great care of Jack. Many were there when Jack first arrived from PICU back in 2005. Also, thank you to Dr. Colleen Wunderlich and Dr. Maureen Nelson for their superb care, as always, of Jack.

Here are some pictures from the last few days.

Natalie, CAYLIE and Jack

Ella and Jack

Teresa, Lisa and Jack

Tara, Jack and Tracy

Jack and Dr. Wunderlich

Ann and Jack

Jack, Baker and Kina

Kristin, Jack and Jennifer

Robin (aka Mrs. Robinson) and Jack

Teresa, Robin, Jennifer, Jack and April

Kelly and Jack

"Little Boy Blue"

2010-06-29T11:22:00.003-04:00

Dedicated to all those children who didn't survive

The little toy dog is covered with dust

but sturdy and staunch he stands

The little toy soldier is red with rust

and his musket molds in his hands.

Time was when the little toy dog was new

and the soldier was passing fair

And that was the time when our little boy blue

kissed them and put them there.

"Now, don't you go till I come back," he said,

"and don't you make any noise."

So, toddling off to his trundle bed

He dreamt of his pretty toys.

And, while he was dreaming an angel's song

awakened our little boy blue.

Oh, the years are many, the years are long

but out little toy friends are true.

Aye, faithful to the little boy blue they stand,

each in their same old place.

Awaiting the touch of the little hand,

the smile of the little face.

And they wonder as waiting these long years through

in the dust of that little chair,

what has become of our little boy blue

since he kissed them and put them there.

----- Eugene Field, 1872

An excerpt from "Silenced Angels, The Medical, Legal and Social Aspects of Shaken Baby Syndrome" by James R. Peinkofer

Jack is back

2010-06-28T22:08:00.002-04:00

Jack has improved dramatically from last week as the clorazepam gradually works its way out of his system. He is smiling and laughing a lot although there is still quite a bit of fussiness. It may take a few more days for it to be completely gone. His therapists reported good progress today and we are still scheduled for discharge on July 2nd. Needless to say, we can't wait to get home.

But, it is good to see the old Jack back saying "busted" and "boo" to all the nurses and therapists. We hope for continued improvement.

One more week

2010-06-25T10:27:00.002-04:00

The care team met yesterday and determined that Jack needed an additional week at Levine. He is still hallucinating but received his final does of clorazepam this morning so we should see the effects begin to diminish and hopefully be completely gone by Monday. So, that would give him a good 5 days of therapy before they let us go on July 2nd.

Obviously, the hallucinations have completely interfered with his therapies. I know the therapists are all anxious to make good progress with him next week. They are all wonderful with him and it has provided a great distraction from "the snakes".

Keep good thoughts.

Update on Jack

2010-06-23T14:04:00.003-04:00

We've had a bit of a setback at Levine. A couple days ago, Jack began hallucinating. Mostly, he complains of seeing snakes and naturally, he's terrified. There's not much anyone can do to comfort him other than try to distract him. The cause appears to be one of the medications that he was on. They are now tapering that and he should be off by Saturday am. Yesterday was probably the worst day and today he seems a bit like his old self. Hopefully, we should begin to see these episodes subside.

So, obviously, we won't be going home tomorrow but more likely, will be early next week. Jack is sleeping better and is napping right now.

Thanks again to everyone for all the support.

Jack's journey in pictures

2010-06-21T15:27:00.014-04:00

four days post-op in the PICU

Jack and CAYLIE

green cupcakes and Aunt Jolene's birthday

a visit with therapy dog Gus

pt at Duke

the critical care team

leaving the floor at Duke

the ambulance was huge

leaving Duke in the Critical Care ambulance

working in therapy with Anne

Jack and Steve Smith on a recent visit to the Panther floor at Levine.

Here are a few pictures from Duke and Levine. Jack is progressing, but can't sleep well at all and is quite fussy. We hope to be home on Thursday.

The care we received at Duke was amazing. It has been a hard recovery for monkey, but he will be okay. Levine is our comfort zone. We have been in this hospital four times. The doctors and nurses are kind and loving.

We appreciate all the prayers, gifts, food and visits. We are very humbled by the love we have been given. Thank you all.

Encouraging news

2010-06-17T12:11:00.002-04:00

Just spoke with the social worker and doctor. Jack's care team met this morning to discuss his progress and plan. He has made significant progress already and is really just needing to build endurance. They feel we may need to stay just another week! We are very excited. We were told it could be up to 6 weeks.

As far as the steroid withdrawal, his last dose was yesterday and he seems better already. His therapy sessions were good yesterday and so far have been good today. He still has periods of "fussiness" but that will linger for a couple days most likely.

Emily, one of the excellent physical therapists here, was prompting Jack as to what his big brother Kris did here at CMC. Kris, as many of you know, is finishing up his 3rd year of med school at UNC. After much discussion, Jack decided that Kris was responsible for parking cars.

In it for the long haul

2010-06-14T21:11:00.003-04:00

Jack had his first day of intense therapy today. He is still very fussy and is not sleeping well at all. We are not sure if it is because of the tapering of the steroid from surgery or some other reason. He is wanting food constantly, another problem with steroids. Hopefully, things will settle down soon and he will be able to fully concentrate on his therapy. Course, it's also possible that he is just tired of the whole experience and wants to be in his own home. It's just difficult to tell.

Regardless, we are in it for the long haul.

Levine

2010-06-11T21:03:00.003-04:00

After a day of travel, Jack is sleeping soundly in his bed on the 4th floor of Levine Children's Hospital in Charlotte. He began the day by taking a very long ambulance ride from Duke Hospital down to Levine. Lisa rode with him while I packed up and picked up Maggie at Jake's apartment.

Jack did very well today. He ate well and seems to be feeling pretty good. Tomorrow the therapy starts. This will include physical, occupational and speech. We are not sure how long he will be here. A rough estimate right now is 2-6 weeks but the team here has to meet to discuss what the goals are and come up with a plan.

Jack loves to see visitors any of you are welcome to come visit or call anytime.

A special thanks to certain neighbors that made coming home even more special.

Talk soon....

Late breaking news...

2010-06-09T22:35:00.001-04:00

Heading home on Thursday! Jack will be transported via critical care ambulance to Levine Children's Hospital in Charlotte. He will be under the care of his current rehab doctor who he has seen since he was 20 months old. We are excited about going home.

Cautiously optimistic

2010-06-09T15:28:00.003-04:00

Jack started feeling better yesterday. He is now eating, drinking and participating in his therapy sessions. He walked a bit further today and the pt said that she had to do less work for him. The head pain does return if the pain meds aren't kept up with though. He is resting comfortably in bed right now watching a movie.

Rumor has it that we may be heading to Levine Children's Hospital (as planned) in Charlotte on Friday. They will continue to strengthen him and get him off the IV meds in preparation for that. He will be transported by ambulance to Levine.

Caylie has been as good as gold here. She just lays at the foot of his bed all day with occasional potty breaks. She has become a real celebrity on our floor. The kids love her.

I hate to even say it because it is too early but Jack has not had any seizures since the surgery. There is a long way to ago according to his neurologist so he cautions not to expect too much too soon. But, he hasn't startled even once which he was routinely doing several times a day prior to surgery.

We remain cautiously optimistic.

Progress....

2010-06-07T20:39:00.002-04:00

Jack moved into a regular room about 2 hours ago. He had his drainage tube in his head removed finally. He no longer has to have the huge wrap on his head which has been bothering him ever since the surgery on Wednesday. Both doctors feel that he progressing very well from a medical standpoint. Jack is still pretty lethargic after complaining quite vocally for several days about his head hurting. He is now very quiet and hasn't eaten all day. He is getting fluids through IV though. Dr. Grant feels that the likely cause of this behavior is steroid withdrawal. The steroids were vital to reducing inflammation from surgery and are now being tapered off. He may want to taper them more slowly to reduce the withdrawals. Hopefully, Jack will feel better tomorrow.

Out of PICU hell

2010-06-06T17:31:00.002-04:00

Finally today we are out of ICU. We have been moved to a stepdown room. His head drainage tube has been clamped and hopefully, will be removed soon. He is still fussy but is sleeping more. In this room, we can all visit at the same time, CAYLIE included. When the tube is removed, most of the head wrap should come off which serves as a great irritation for him. Will keep you updated...

Update on Jack (Sat.)

2010-06-05T08:47:00.005-04:00

Last night, one of Jack's eyes was dilated. Catscan was negative. Dr. Grant says all is well. The dilation is caused by fluid levels in the brain and isn't a great concern. Also showed a small bleed in the catscan but again, not a concern. Dr. Grant wants him moved to a room today and the head dressing removed. I think this will go a long way to making him feel better. CAYLIE can also visit. :) Lisa and Jo back to RMH for rest. I'm on duty.

New update on Jack

2010-06-04T21:08:00.002-04:00

Jack is spending his 3rd night in ICU. The doctors/nurses want to monitor him closely just one more night before sending him to a "step-down" floor where there is less one-on-one nursing care. He is still a bit combative and we're not sure whether it's pain related or just Jack being Jack. He reacted a bit negatively to a couple narcotic pain killers so they are trying others to try and manage the pain. Hopefully, we will be in a room tomorrow and CAYLIE will be able to snuggle with him in bed. Lisa's sister Jo, nephew Mitch, Kris, Shannon, Jake and Nat have all been great support for us as we pull these all nighters. We will keep you posted as always.

Thanks again to all for positive thoughts and prayers.

Update on Jack's surgery

2010-06-02T17:54:00.002-04:00

Jack is out of surgery and resting comfortably in pediatric ICU. The surgery went very well and as expected according to the neurosurgeon. He has spoken and articulated several things about what hurts, etc. which is good. We were worried about his speech. Also, he moved his right leg. Also a concern. Thanks for all the prayers and good wishes from everyone. We will be at Duke for at least a week before continuing on to Levine in Charlotte. We'll keep you posted.

Update on surgery

2010-06-02T11:59:00.002-04:00

Jack's surgery started on time around 9am this morning. All updates so far indicate everything is progressing as planned.

Jack's surgery scheduled

2010-06-01T21:41:00.001-04:00

Jack's surgery is scheduled for Wednesday, June 2nd at 8:45 am. He is expected to be out of surgery and in ICU around 2pm. I will try to update as time permits.

The Time Has Come

2010-05-30T17:29:00.002-04:00

Well, everyone. The time has come to head to Duke for surgery. Lisa and I have experienced such a roller coaster of emotions over the last few weeks that we're not sure what to expect this week. But, we can say that we have the best friends, neighbors, family and church that anyone could ever ask for. The support that you all have provided to us has been, to say the least, overwhelming. So many prayers, cards, gifts, phone calls, toys for Jack, snacks, etc. have been provided that we feel very blessed.

Our schedule is to head out Monday. Surgery is Wednesday. We won't know the time until they call us on Tuesday.

I will try to post an update as soon as I can either Wednesday or Thursday but we will see how things go. He is expected to be in intensive care for about 2 days before being transferred to a regular room.

Thanks again everyone for your support.

Happy Birthday Jack!

2010-05-18T09:20:00.006-04:00

We celebrated Jack's 7th birthday at Chuck E. Cheese Monday night. Now, I know what you're thinking. Screaming kids, loud music, etc. They even play music in the bathrooms. There's nothing like the Chuck E. Cheese band covering "Hey, Soul Sister" by Train 26 times in one evening. But, actually, it was quite enjoyable. It wasn't that crowded. There were only about 325 kids there. Only kidding. Mondays are their least busiest night. And, I got rid of all the tokens! But, more on that later.

Thanks to all who came to celebrate along with us. Especially the two school teachers who had just endured a long rainy day stuck inside with their own kids. Jack had a great time and I think the adults did too.

Now about those tokens. I have this desire, some would say obsession, with getting rid of all the tokens and not having to take them home. It's just more clutter and then we'd have to remember to bring them the next time (cause you know there's going to be a next time) and then they just keep accumulating and ... you get the picture.

So, as Jack continued to play, I quietly played along side, generously handing out tokens to anyone who wanted to join in and when it was time to go, we had to my great joy, completely exhausted the supply of tokens! Yipee! So, then we got in line to feed the 800 tickets into the ticket-eating machine which spits out a little piece of paper that says you had 800 tickets. You then take it to the counter, stand in line again behind more kids all trying to figure out which toy they want. So, then Jack picks out a couple little plastic things with his 800 tickets and we turn to head back to the table. Then, this little manager, looked about 16, comes over and says "Hey little man. Did you have fun? Well, good. How about a couple more tokens to play a couple more games?"

I could see the headline now. "Local man strangles 16 year old Chuck E. Cheese manager"

So, Jack insists, of course, in using the tokens, which I readily agree to and we hoist him up on the merry-go- round for two spins. During the 2nd spin, a lady comes over with her 1 year old and places him on one of the horses. No problem. Right? Wrong. She says "Oh, do you mind? Here have a token." AHHHHHHHHHHHHHHHHHH.

Pictures....

Shannon won by 10 points by the way

Chapel Hill

2010-05-11T19:58:00.006-04:00

We had an awesome weekend in Chapel Hill for Jake's graduation from UNC and rather than blather on about it I will just show you pictures, so here they are....

Jack and Lily get acquainted

Jake and Lily (Lily is biting, actually a very common event)

See what I mean

Dinner at Carolina Brewery: Natalie, Marybeth and Tina

Now, where is John Grisham?

Jake and Natalie

Graduation day: Jake with his grandparents, Mary and Andy

Jake and his very proud moma, Lisa

At Kenan Stadium: Kris and Shannon

Over 5600 finally seated

Carolyn, Meghan, Nat, Jessica, Lisa, Jake, Daniel, Jack, Eliot, Kurt and Kris

Jack and Jake

Celebrating Jake's birthday on Monday at The Carolina Inn

Wilmington and the 1st annual p4p 5K

2010-04-19T09:21:00.009-04:00

We had a quick but fun trip to Wilmington this weekend. Jack was "master of ceremonies" for the start of the race and did a great job saying "ready...set...go!". There was a great turnout and hopefully a lot of money raised for the paws4people organization.

One humorous note...awareness of the existence and purpose of service dogs continues to be a challenge for all of us. We stopped at a McDonalds (where else?) in Wadesboro in Anson County on the way Saturday. Lisa said when she walked in with CAYLIE, someone asked her "Is that thar one of them seein' eye dawgs?". We just have to keep plugging away folks. Right?

We were very blessed to get to spend some time with Susan and Dan Ivancevich. We were so excited to finally meet Amanda and ELLIE. ELLIE was one of the first service dogs provided by the paws4people organization. Susan wanted to see the type of harness that CAYLIE uses with Jack. Amanda practiced walking around with CAYLIE which was pretty awesome. Amanda is doing amazingly well.

It was so helpful for us to spend time talking with Susan about their experiences as Amanda had the same surgery Jack is about to have. Although they have completely different diagnoses, it is helpful to talk to someone who had to go through what you are about to have to go through.

Susan invited us to visit their horses before heading home and Jack got to do some riding and see some of the animals. See the pictures below.

++++++++++++++++++++++++++++++++++++++++++++++++++++++

Spent a little time at the beach Saturday afternoon. It was so windy that Jack couldn't tolerate it but it was nice to see the ocean again.

Katelyn, CAYLIE, Jack, Kyria and WYATT

Jack and Amanda meet for the first time

CAYLIE putting on her best pose

Jack announces the start of the 5K race

Jack, CAYLIE and Kyria

Amanda practices with CAYLIE and her harness

Amanda doing very well standing with CAYLIE's help

Jack and Katie each hold one of the newborn goats

Jack loved getting to ride!

Jack's surgery date set

2010-04-09T10:35:00.002-04:00

The surgery date is now set for June 2nd at Duke Hospital. He will have pre-op appointments on June 1st. We will most likely travel up on Monday, May 31st, Memorial Day.

Update on surgery

2010-04-07T18:00:00.002-04:00

Met with Jack's doctors yesterday and are looking at the end of May/1st of June for Jack's surgery. He has to be weaned off the depakote as it interferes with platelets and they are critical for clotting. Six weeks are required to get him off the medicine so that's why there is the delay.

The procedure will last about 4 hours and he will be in intensive care for a couple days followed by about 5 days in a regular room. They will then move him to inpatient physical therapy at Levine Children's Hospital in Charlotte. It is expected that he will not lose much functionality with this surgery. The neurosurgeon expects him to recover relatively quickly due to his young age.

It is unclear what to expect seizure-wise after the surgery. With some patients, the seizures completely go away and never return. Some have a couple post-op. In some cases, the seizures are reduced in intensity or can be better controlled with medication. All in all, there is roughly at least a 50% chance of being completely seizure free with no more meds required.

We will let you know the exact date as we progress towards the surgery.

A Special Day to Remember

2010-03-23T09:34:00.003-04:00

Today is a very special day as it is the 5th anniversary of the day that Jack came home to live with us. Little did we know then that he would become the permanent fixture in all our lives that he is today.

Also, today is CAYLIE's 2nd birthday. With her vest on, she definitely acts her age, like an adult, but without it, not so much at times. She sometimes still bounds around throwing her toys and playing with Maggie. Maggie, I believe, has actually grown to like CAYLIE and enjoys play wrestling with her also.

Talk later...

It's time

2010-03-20T09:25:00.003-04:00

We have talked with Dr. Mikati and he and Dr. Grant (the neurosurgeon) discussed Jack's case along with their team this week. They are recommending surgery. Specifically, the hemispherectomy. We have been preparing ourselves for several weeks for this. Although a relief, at the same time, it is so scary. Putting your precious child through something so delicate and dangerous. But, we have to trust the doctors. They are supposed to be the best. We discussed with him the fact that we could not get a successful functional MRI and he said that this test is relatively new and although they like to have it, it is not absolutely required. His nurse is going to check and see if we can try one more time by having it done at Prebsy or CMC here in Charlotte. Dr. Mikati said that he "would be surprised" if his speech center had not relocated and that they (the team) would have recommended the surgery anyway.

Besides seeing about the MRI in Charlotte, our next step is to meet with both Dr. Mikati and Dr. Grant on April 6th at Duke presumably to discuss the surgery.

For a complete description of the surgery, visit this link.

For an article regarding a study done back in 2003 on the results of the surgery visit this link. It shows that the surgery is generally very successful.

Thanks to all for your continued thoughts and prayers.

Waiting to hear

2010-03-15T13:29:00.002-04:00

Sorry it's been so long but once again we're waiting to hear from Jack's doctors. We had another disastrous trip to Duke. The functional MRI did not go well. This time, Jack was combative, probably due to the effects of a Valium that was prescribed to him to try to calm him down. Sometimes they have the opposite effect. Now we are expecting to hear this week on what the doctors want to do next. We still have not confirmed the location of the speech center of his brain. A hematologist did check him out while we were there and cleared him for surgery if that becomes a reality. The stress has been pretty bad at times but all of us are dealing with it the best that we can. We'll keep you updated...

A Hard Day for Jack

2010-02-22T13:09:00.002-05:00

Yesterday at church, we had a wonderful service to install our new senior pastor. It was a hard day for Jack though. During the children's sermon he had a bad seizure and hit his head on the floor. He was seated on the carpet, so at least he didn't fall.

It was also our first day to take CAYLIE to church with us. She was very good in church and was blessed during communion. A luncheon followed the service and CAYLIE was well behaved under the table while we ate. Jack wanted to walk with his cane to visit with everyone. He was walking with a couple of friends and suddenly fell with a seizure. He had on his helmet fortunately. He was unresponsive for 7 or 8 minutes.

He slept and rested on the couch the rest of the day and ate only a few bites for supper.

This morning he was quite chipper and told me he felt better. I have a sense of urgency for some reason. We need to finish our testing at Duke so we can decide if surgery is an option.

We are scheduled with hematology on March 10th. A couple of things in his bloodwork were low and affect clotting.

The doctors at Duke have been very good so far, so we hope for help with his seizures soon.

"One of the blondes"

2010-02-11T22:43:00.002-05:00

So, until we hear back from Dr. Mikati at Duke, there's not much to report. We may need further testing before a decision is made about surgery. We'll keep you posted.

Meanwhile, when I came home tonight, I was looking through Jack's schoolwork and found what looked like a card decorated in crayon. It was inscribed: To Jack from Hayley. I asked Jack who Hayley was and his reply was.... and I quote.. "Oh, she's one of the blondes". Not kidding. This child has had a thing for blondes since he was 2. Doesn't matter if they are 2 years old or 50 years old, human or canine. Blonde will do. It's hilarious. I will never forget one of the first times we went to a restaurant when we first got him and he was sitting in a high chair. When a blonde waitress walked by, he actually turned his head both ways to get a good look at her! Watch out ladies. This one will steal your heart.

Prayers for Owen

2010-02-07T21:57:00.002-05:00

Please read this unbelievable story recently published in the Charlotte Observer. It hits close to home for us.

http://www.charlotteobserver.com/local/story/1230319.html

The next Jim Abbott

2010-02-03T13:54:00.003-05:00

Many of you may remember the incredible Major League pitcher a few years back that was born without a right hand. Jim Abbott was truly an inspiration to watch. He would throw the ball and shift the glove from his right forearm to his left hand in one motion, ready to field the ball if necessary. He was actually a very good pitcher. Incredibly, he pitched a no hitter for the Yankees in 1993. He now currently works as motivational speaker.

Well, we may have our own little "Jim Abbott" on our hands on our Wii system. When Jack and I play baseball on Wii, I can't seem to hit him when he's pitching. His batting is improving and I'm afraid he's going to be trouncing Dad before too long. He varies his pitches so much that I can't put two hits together and score any runs. Most of our games end in scoreless ties! Like I said, when he starts hitting the ball, I'm in big trouble.

Guess I'd better start practicing when he's in bed.

Jack "The Trooper"

2010-01-26T10:35:00.004-05:00

Wow, what a trip! We are finally back from Duke. We went up on Wednesday night and Jack was admitted on Thursday. I say he's a trooper because how many 6-year olds do you know would sit in a bed for 5 days with wires attached to their head and not complain very much?

First the medical stuff:

According to the doctors, they received excellent data from the EEG monitoring. They felt "pretty certain" that all seizures were coming from the left side of the brain which is what we are wanting. The room was equipped with audio and video so they could monitor Jack during his seizures. And boy, did he have a lot! He had all types of seizures while we were there, even a few rare ones that we had not seen very often. And, he was never taken off any of his meds the whole time.

It was wonderful having family nearby since we weren't in Charlotte. Jake and Nat were kind enough to put up with me and it was invaluable having Kris there when the doctors explained what was going on. He provided the "doctor to non-doctor" translations after they left.

The next step is to verify with as much certainty as possible that the seizures are all left brain originating. We are trying to get all those tests scheduled for Feb. 10th at Duke. They will consist of several different types of MRI's.

To "nutshell it" as Lisa likes to say.... if all seizures are left brain and the left brain controls no right side activity, like motor or vision or speech, then performing a surgery to "disconnect" the left brain would have little or no impact on his functioning and most importantly, would eliminate the seizures.

It's scary, but that's where we are headed. It's a question of quality of life.

Secondly, we have to say that the medical care at Duke was first rate. There were two medical teams that covered Jack. They all actually communicated with each other. They explained what they were seeing and what they needed as far as seizure activity from Jack. They interacted with Jack and answered our questions very well, which we had a lot as you can imagine. The nursing staff was excellent as well with the exception of one night nurse. One nurse got weepy when we were leaving. He leaves these women crying wherever he goes!

Thanks to all of those who provided gifts and treats for Jack to keep him amused and for your emails, Facebook messages and phone calls. Keep it going, there's more to come.

PS. Kris, please return Jack's toy pager. You aren't fooling ANYONE.

Pictures below...

Getting settled in the bed with CAYLIE

Melissa, Jack's former social worker stopped by for a visit

Jack with Jake and Nat

Opening one of his many gifts

Kris and Jack

There's an agonizing story behind this plate of spaghetti.

Jack with the best momma in the world getting some lap time

"The Claw"

CAYLIE's favorite mode of sleeping

Up and back

2010-01-13T10:36:00.002-05:00

We traveled to Duke Hospital in Durham yesterday to meet with Dr. Grant and Dr. Mikati.
We met with Dr. Grant first. He is the neurosurgeon and we REALLY liked him. We did discuss the hemispherectomy but he wants to make absolutely sure that those seizures are all coming from the left side.

The actual procedure involves removing some parts and cutting some others, not removing the whole side as might have been suggested before.

We talked about the test to put the left side asleep and he was definitely hesitant to do that. It has a risk of stroke and would be very traumatic for a 6-year old as he would have to be awake and lie very still. They can get the same info from an MRI.

We discussed the VNS and ketogenic diet again but he felt, although relatively risk free, the chance of reducing or eliminating his seizures would be pretty low. He was personable, interacted with Jack and genuinely listened to our concerns. He and Dr. Mikati are actually in the same office together and work as a team, so they will review Jack's case together as we go forward.

We next saw Dr. Mikati. He is the Director of Pediatric Neurology at Duke. An interesting little man, but obviously very smart. He asked very detailed questions about all the different types of seizures he has, what medicines he has tried, etc. He said we'd start with a 3-7 day EEG monitoring and maybe an MRI later.

We thought it was all going well until Dr. Mikati said... "ok, we'll set a follow-up for April". We said "what?". He said there's a long waiting list for the EEG monitoring. We said we'd really like to push it up if possible so he left the room and came back and few minutes later. Magically, there'd been a cancellation on 01/21.What we think really happened was that he talked to Dr. Grant and decided it was best to move forward more quickly.

So, the plan is to go into Duke on 01/21 for 3-7 days of EEG monitoring. This is where they hook the electrodes up to his head and he has to stay in bed the whole time. It's unpleasant but not uncomfortable. The Child Life people hopefully will keep him entertained and we hope to have CAYLIE in the room with him. The length of time depends on how many and what type of seizures they can collect data on.

According to Dr. Mikati, once they review the EEG, they can reasonably predict a % success rate with the surgery. For example, 70% chance of being seizure free etc. Anything less than 50%, they won't recommend the surgery. It could be anywhere from 50% to 80% depending on the results of the EEG. It is possible that he would not have to take medicine any more. It is also possible that he would still have to take some. It is also possible that the surgery wouldn't work or that seizures could develop on the other side later. We will get more info on the risks if/when it becomes a reality.

Lisa and I feel better about things and are hopeful now that we have a plan. Thanks to all for your thoughts, prayers and concerns.

Catching up

2010-01-09T09:31:00.005-05:00

Finally. Time to breathe. But not much. We head to Duke on Tuesday for two appointments with a neurosurgeon and a neurologist to discuss Jack's situation. Hopefully, the two offices will ACTUALLY communicate and come up with a plan for testing. The situation with the neurosurgeon in Charlotte has gone from the sublime to the ridiculous. He is the one who felt that surgery might be the best option. During our appointment he withheld a final recommendation pending further review of Jack's medical history. His nurse then told us that he was going to present Jack's case to the monthly meeting of neuro-specialists in Charlotte on Dec. 18th. Well, of course, we never heard anything. Finally, we called them and they said that actually our neurologist was supposed to do that. She knows nothing about it. Typical doctor's offices. So, meanwhile nothing gets done and we've got no further recommendation or information from the Charlotte neurosurgeon. He shall remain nameless in this blog. So, we are looking to the two Duke experts for advice. He's supposed to be the best so we may end up with him in the long run anyway. We'll see.

Now on to more fun stuff. We had a wonderful Christmas and New Years. Christmas was at home (always the best place). We spent Christmas afternoon at my brother's along with my parents. For New Year's, we drove to West Virginia to visit Lisa's Aunt Dottie who had her ??th birthday on Dec. 29th. We all know how old she is but aren't allowed to say. She is an amazingly spry ??-year old. Had an interesting experience at the hotel we stayed in regarding Jack and CAYLIE but I think that belongs in our other blog: http://www.jack-paws4people.blogspot.com/. I'll add it soon.

Then we drove on up to Ohio, affectionately known as "the Motherland" in our family. We stayed with Lisa's sister, Jolene and had a great time watching football. Ok, so Lonnie and I had a great time watching football but we did drive over to the Ohio State campus and pick up some OSU stuff for the big game on Friday. Jolene, always colorful, was constantly being reminded by Lonnie and Lisa about little ears so the running joke was that Lisa was going to put her phone number on the school's speedial when Jack started repeating any "interesting" comments when he returned to school. So, we were constantly saying "speedial" to Jolene.

I need to point out that Ohio State won the Rose Bowl big time over a favored Oregon 26-17 and finished the season 11-2 and ranked 5th. I also need to point out to any U. of Cincinnati fans out there who actually is the best team in Ohio now? Same as every other year in history. Ok, enough ranting. Oh, also, we beat Michigan again. Oh and bye-bye Pete. Enjoy the NFL again. Ok, so now I'm REALLY done.

It was VERY cold in Ohio but actually NC is competing very nicely right now. The difference is this won't last long. In Ohio, it will last until March.

Also wishing my brother Mike a speedy recovery from surgery. Get well soon Mike!

Pictures of our trip...

Life Day

2010-01-07T15:38:00.002-05:00

I am sooo behind on blogging and will catch up soon with all the holiday and travel happenings but wanted to recognize that today is what we celebrate as Jack's Life Day. It is the 5th anniversary of Jack's admittance to CMC and represents him being a survivor of Shaken Baby Syndrome.

Happy Holidays!

2009-12-23T06:30:00.004-05:00

May you have a wonderful Merry Christmas and joyful New Year from our family to yours.

Eliot, Lisa, Kris, Jake, Jack, Moe, Maggie and Caylie

Catching up with old friends

2009-12-12T15:45:00.013-05:00

One of the many blessings that came from the Observer article was an email from Phil Sperling. Phil is the owner of Ditto. Ditto, as you may remember from the article, was the service dog that prompted Jack to say his first word following his loss of speech. It was "dog", of course. Phil was very moved by the fact that his dog had helped Jack that he contacted us through the reporter at the Observer.

Phil and Ditto are doing very well. Ditto is now 14 and has the same calm demeanor and beautiful face that we remember from back when Jack was in the hospital. This dog is truly an amazing dog. He can dial 911 for Phil in case of an emergency. He knows sign language and Hebrew. As a matter of fact, all the commands that Phil gave him when we were there were in Hebrew.

We took Phil to lunch and enjoyed catching up and talking about holidays and family. Jack and Phil prattled back and forth like Jack likes to do. We had a good time and promised to keep in touch and get together again soon.

Happy Hanukkah Phil!

It's official..

2009-12-08T09:23:00.005-05:00

Yes, it's official. CAYLIE is now a Swiger! Karen gave us the word yesterday that she is now a member of our household. Woo hoo! Except for occasional paws4people appearances and prison visits, she is now an official Swiger doggy and will be staying with us permanently.

And keeping with the tradition of all Swiger dogs, CAYLIE will be given a middle name. Before her, there was Lacy Belle (God rest her soul) and Moe Andre to honor my parents (believe me they were THRILLED). Also, there is Maggie Ann (for Lisa). So now, there is CAYLIE JO in honor of Lisa's sister Jolene.

Somehow, I think Jolene IS actually honored.

Anyway, please welcome CAYLIE JO SWIGER to our family.

Over the next couple of months she will continue to train Lisa and I in how to do things right.

It's that time of year

2009-11-30T11:31:00.003-05:00

Even though the weather was mild, we hauled out the old Christmas tree and decorations yesterday. Jack was so excited he could hardly stand it. It's nice to have a little one in the house to remind us of what Christmas was like when we were children. With all the stress recently regarding the medical issues, it was nice to have a little time to think about nothing else but keeping Jack from grabbing the breakable ornaments. There was only one casualty and no blood was spilled. The tree seems particularly beautiful this year.

New blog for Jack and CAYLIE

2009-11-23T14:34:00.005-05:00

The paws4people organization has asked us to begin a new blog detailing the "transfer" process. It is entitled "jack & CAYLIE". I have added a link on this blog so please feel free to check in on both our blogs at any time.

Bradford Park Turkey Trot a huge success!

2009-11-23T14:07:00.004-05:00

As expected, we had a large turnout for the 3rd annual Bradford Park Turkey Trot on Saturday. This one was special though. The local charity was none other than our very own paws4people and all proceeds were to be contributed in Jack's name. If you haven't heard, over $3100 was raised thanks to the generosity of our neighbors and local businesses. Again, thank-you to everyone who made this possible and enjoy the pictures.

Graduation day and catching up...

2009-11-20T10:50:00.007-05:00

Hello everyone. Sorry it's been so long but it has been crazeee around here. We had a wonderful trip to WV for CAYLIE's graduation. We even got to bring her home with us for a night and now we are in the process of doing the transfer training. During this time, Karen Owens, the NC trainer will train Lisa and I in handling CAYLIE. Actually, I had previously thought this would only take a few weeks but found out today that it will take 2 - 3 months. She will be able to move in with us permanently in 2-3 weeks (CAYLIE, not Karen) but the actual complete training will take longer. Anyway, we are thrilled to have CAYLIE around almost all the time now and Jack is loving it as well.

A cd is forthcoming from the graduation cermonies but we took a few at the reception.

Mom and Dad at the reception

Kyria - the woman who started it all looking sweet (we know the truth though)

Heidi and Jack

Terry looking thrilled to have his picture taken

The graduate - CAYLIE

Jack and CAYLIE getting close

On a more serious note, Jack continues to struggle with the seizures. He had such as severe one the other day that there were residual effects from it for a couple days afterward. The neurologist ordered an EEG and bloodwork to make sure it wasn't anything more serious. It wasn't. Meanwhile, we were a bit blindsided by the neurosurgeon who calmly suggested that we might want to consider brain surgery over the VNS therapy. Needless to say, we are struggling with that whole thing. Our neurologist, though, was very kind and helpful, but to add another twist; his last day is today!

Goodbye Dr. Nelson, or Dr. James as Jack calls him.

Graduation day draws near....

2009-11-10T12:07:00.002-05:00

This Saturday, the much anticipated event at Hazelton, West Virginia finally takes place. Lisa, Jack and I along with my parents, Mary and Andy Swiger, will be heading to the US Penitentiary Secure Female Facility and Camp to attend a very special graduation. CAYLIE, will be graduating from the paws4people program that she has been in since she was a small puppy.

CAYLIE has been preparing to become a full service dog and since last winter, specifically, Jack's service dog. After graduation, she will come to North Carolina and live with Karen, her trainer, as she begins her transition to our household. Lisa, Jack and I will all have to be trained on how to handle her, especially in social situations. As many of you know, CAYLIE's biggest job will be to provide mobility and stability to Jack.

We will update you when we get back.

A weekend in the mountains.....

2009-10-27T09:02:00.004-04:00

We couldn't have picked a more beautiful weekend to spend in the North Carolina mountains. Thanks to the generosity of Mark and Pam Hofer from Advent Lutheran we had a wonderful time. They have a brand new 3 bedroom cabin in McDowell County and the leaves were at their peak this past weekend. We had a little rain on Friday but that didn't stop us from building a roaring campfire and roasting hot dogs and marshmallows to make smores. The sun was out on Saturday and Sunday and the view off the back deck was tremendous. Lots of pictures below.

A day at the track

2009-10-19T18:52:00.003-04:00

We spent a good part of Saturday with Lisa's sister Jolene and her boyfriend Lonnie at Lowe's Motor Speedway, which is about 15 minutes from our house. It was cold but we had fun walking around and seeing all the different vendors and all the souvenirs and sampling the food. (Not me of course.) Jack had a great time seeing the race cars up close and one man even gave him a lug nut off one of the race cars as a sourvenir. Jo and Lonnie spoiled him as usual by buying him toys.

We also spent some time in their RV with their 3 dogs. That was really enjoyable despite being parked right next to some Michigan fans. And when we learned that Ohio State had lost to Purdue, of all teams, they actually didn't rub it in too much. Of course, they knew that I could always play the "App State card" at any time. There were lots of OSU fans at the track all lamenting the impending loss as the game was winding down.

But, other than that, we had a great time. We are planning a trip to Columbus for New Year's to visit them. Enjoy the pictures below.....

Over $1100 raised for paws4people!!

2009-10-12T13:57:00.003-04:00

The fundraiser at Advent this past Saturday was a huge success thanks in part to all the vendors and customers. Approximately 15 vendors donated a portion of their proceeds to paws4people in Jack's name. There was good turnout and quite a variety of gifts available for early Christmas shoppers. One of the paws4people dogs, Nikki, was also present (thanks Sharon). We are happy to announce that over $1100 was raised! A special thanks to Mona and Betsy for organizing this event. A few pictures below...

paws4people fundraiser this weekend

2009-10-06T12:34:00.003-04:00

Advent Lutheran Church in Charlotte, NC is hosting a fundraiser for paws4people this Saturday, October 10th from 1-5pm. Sixteen vendors, including Mary Kay, Tupperware, Pampered Chef, Spirit Glass (Lisa's jewelry), Southern Living and others will be donating 10% or more of their proceeds to paws4people in Jack's name. Please come and support paws4people.

If you can't make it, you can also make a donation in Jack's name by clicking on this link.

Visit to Chapel Hill

2009-09-20T17:36:00.003-04:00

We had a good visit with Jake in Chapel Hill this weekend. However, we did meet with the pediatric neurologist as planned and although he didn't have anything new to offer in terms of treatment he did stipulate that he didn't feel the baclofen pump was in any way interfering with or otherwise affecting his seizures. He also confirmed that we were probably at the end of trying all the anticonvulsants that would be available, which we also knew.

Basically, here are our options at this point:

1) Ketogenic diet - high protein, high fat diet that has shown to reduce seizures in some epilepsy patients. Click here to learn more.

2) VNS - vagus nerve stimulator: a device implanted in the neck that sends a mild electric shock to the vagus nerve. To learn more click here.

3) Epilepsy surgery - obviously, a very last resort and one that we are definitely opposed to at this time. This involves removal of the damaged brain tissue and carries a significant amount of risk.

The doctor advised us to proceed by going with the least invasive option first and moving up. So, we will probably look at the diet first. The difficultly with the diet is that you have to eliminate carbs and that's mostly what Jack eats. We will seek a referral from our doctor to a nutritionist and then go from there.

That's all for now.

Chapel Hill...finally

2009-09-17T19:52:00.002-04:00

Sorry it's been way too long since the last entry but we did get a call today that there is an opening with the pediatric neurologist in Chapel Hill that we've been wanting to see. We had thought we weren't getting in until October so this is good. This particular doctor is familar with Jack's type of seizures AND the intrathecal baclofen pump so we're hoping that he can provide some guidance on our next steps.

We will be heading up this weekend and of course, will be visiting with Jake.

We will keep you updated.

Jack and Bella

2009-08-31T09:04:00.002-04:00

We went to visit Kris last night for dinner and Jack got to meet Shannon's new kitty Bella. Jack enjoyed playing (and to some extent, torturing) Bella. But Bella took it all in stride and playfully chased everything Jack tossed around the room. Cute kitty Shannon!

More local coverage of Jack and CAYLIE

2009-08-28T09:04:00.005-04:00

Here is another recently published article on Jack and CAYLIE.

Thanks to Candace for this coverage. Click here to read the article.

1st day of 1st Grade!

2009-08-26T09:58:00.003-04:00

Yesterday was Jack's first day of school and he was so excited to be going back. We are very grateful for the new school hours this year as he doesn't get on the bus until 8:00 and doesn't get home until 3:30. We were getting him up at 6:00 last year so this is much easier. His new teacher is Mrs. Sosa and although Jack misses Mrs. Hall very much I think they will get along just great.

"Pay It Forward"

2009-08-20T19:26:00.002-04:00

Please read this article published in The University City Weekly newspaper of Charlotte, NC entitled "Pay It Forward".

CAYLIE

2009-08-17T09:52:00.006-04:00

We had quite a whirlwind weekend but enjoyed our time spent with CAYLIE and the paws4people crew. On Saturday, Terry, Kyria, Jeremy and of course, CAYLIE, all came to visit us and Jack and CAYLIE practiced walking with a new harness. CAYLIE, still acting very much like the puppy that she is (16 months), bounded around the house and backyard retrieving a ball she had picked out of Jack's toys. She was quite the bundle of energy.

We learned that graduation will probably be in the mid-November timeframe. As to exactly when we will receive CAYLIE permanently in our home is still to be determined. She still has a bit to mature and the training with her and Jack will be more gradual. Still, we're hoping for placement late this year if all goes well.

Maggie was not her usual feisty self as she was recovering from an allergic reaction to a rabies vaccination but was a little put off by CAYLIE's bounding around "her" backyard and snapped at her once. I think once they are together for a while, they will be the best of buddies.

On Sunday, Lisa had her fundraiser for paws4people at Candace and Paul's house. She did extrememly well, raising $300 for "paws". Thanks to all the friends and family that came for support and purchases of Lisa's handmade glass jewelry. CAYLIE and Jack were in attendance of course. CAYLIE was much more subdued on Sunday, probably due to the large number of people and activity. She was content with laying at Terry's feet and napping from time to time.

Enjoy the pictures.

Learning to use the new harness

Jack and CAYLIE will have to figure out how to coordinate each other's movements which will only come with practice.

Jack was practicing voice commands like 'down', 'leave it' and 'eat'

Getting a wet kiss

What a beautiful dog

CAYLIE, Jack, ADDIE and Terry

CAYLIE at the fundraiser

A surprise visit from Mrs. Hall

Charleston

2009-08-12T22:33:00.004-04:00

It was a wonderful but too short a vacation for all of us in Charleston this past weekend. Although it was very hot and humid, we were blessed with little rain. We enjoyed two wonderful dinners; Friday night at Coast Bar and Grille and Saturday night at The Buccaneer. Jack had a great time Saturday in the park just outside the Embassy Suites while the ladies shopped in the flea market. He did some kids games and rode a pony. Pictures below....

Ready for Charleston

2009-08-03T09:46:00.003-04:00

As we look forward to our vacation to Charleston this weekend, I wanted to update you on the seizures. We are trying the vimpat again with a bit more success. The seizures seem milder. When he is startled, he seems to be able to arrest them easier and they only last a couple seconds instead of a minute or so. But, that being said, he still has violent ones from time to time and it may be that he has the type of seizures in which the medications lose their effectiveness after awhile. We are still hoping to get in to see the doctor in Chapel Hill before October.

We are very excited about going to Charleston this weekend with Kris, Shannon, Jake and Natalie. It will only be for the weekend but it is one of our favorite places to visit and will be nice break from work and doctor appointments.

Jack says, "You rock, dude".

Are you sure he's only 6?

2009-07-20T16:02:00.003-04:00

Lisa has been working on her jewelry for an upcoming show to benefit paws4people and she made Jack his very own bracelet. She began to tell him he looked cute or handsome or something to that effect but couldn't decide on the best word to describe it. Jack completed it for her.....distinguished.

Jack's visit to the fire department

2009-07-20T15:51:00.003-04:00

On Saturday, Jack was invited to tour the Harrisburg Fire Department station #1. He had a great time looking at the big fire trucks, rescue vehicles and where the firefighters ate, slept and hung out. All the guys that were on duty were great and let him turn on the lights and honk the horns. He was presented with his own fire hat, too. We've included some pictures for you below.

Many thanks to all the firefighters, especially the guys at HBFD #1.

July 4th and Jack updates

2009-07-10T19:42:00.008-04:00

We had a great family reunion in Blacksburg, VA over the July 4th weekend with our family, Kurt's family and Mike and Suzzie all meeting at Mom and Dad's. Jack got to meet his Uncle Mike and Aunt Suzzie for the first time. We had a great time playing games, playing volleyball in the pool and eating out. I included some pictures below.

Shannon, Kris, Jack, Mary, Daniel, Meghan, Mike, Suzzie, Kurt, Eliot, Andy, Jessica, Jake, Lisa and Carolyn (L to R) (Natalie, not pictured)

Grampy and Jack

Aunt Carolyn and Jack

Jack continues to struggle with seizures, some of them getting pretty violent. His neurologist has indicated that there are no more medications that he can suggest to try. He suggested a device called a Vagal nerve stimulator. We are not sure this is something we want to do but will at least hear the details of what it involves first before making a decision. Other options might involve seeking another neurologist's opinion.

We were very pleased to find out the Advent Luthern Church men's group raised over $4100.00 for paws4people through their BBQ and auction. Thrivent Financial kicked in a portion also. Our church has always and continues to be extremely supportive of Jack.

Lisa and I just cannot express in words what our church has meant to us during our fostering, adoption and care of Jack. So many people have gone out of their way for us and this is just another way that they are showing it.

The following appeared in our weekly newsletter:

Our thanks and blessings go out to those that came out to the AnnualSpring BBQ and Auction to raise funds for a Therapy Dog from Paws4People for Jackson Swiger. Your generosity and love for Jackson and the matching funds provided by Thrivent Financial for Lutherans raised $4,105 for Paws4People. A big Thank You to you all from Lisa, Kris, Jake, Jack, Eliot and the Lutheran Men.

This and that...

2009-06-24T09:23:00.002-04:00

Good news on all fronts.

More success with 'potty boot camp' adventures. That 'light' is getting bigger. Sorry, no pictures this time.

Also, Jack's weight is coming back big time. We weighed him at home and he is back to 48 lbs., nearly back to his original 50! We've stopped the appetite stimulant and one less medicine is always a good thing.

We'll keep you posted...

Kristopher's birthday

2009-06-23T13:40:00.003-04:00

A few pictures from our celebration of Kristopher's birthday and Father's Day. Lisa, Kris, Shannon and I celebrated by eating out at one of our favorite restaurants: Hotel Charlotte

Happy 24th Kris!

Potty Boot Camp

2009-06-20T14:52:00.006-04:00

Maybe, just maybe, we are starting to see a small, if barely perceptible, pinpoint of light at the end of the tunnel. A couple of small successes! What seems to have worked so far is just to feed him while he's on the potty and eventually, well, you get the picture. We have the use of very handy chair that keeps him safe in case he has a seizure and doubles as a table.

Keep your fingers crossed. We're running out of diaper sizes!

Just in case you had trouble picturing this in your mind, we are happy to share pictures with you. We know you were worried.

By the way, Happy Birthday to Kris, who turns 24 today. He and Shannon are on the way to Hilton Head for a much deserved vacation.

A milestone: Promoted to 1st Grade!

2009-06-11T22:05:00.012-04:00

Jack and Mrs. Hall

For those of you who know Jack's story, you understand what a true milestone this is for Jack. He has overcome so much in his short life and to complete kindergarten and move on to 1st grade is such as huge accomplishment. His progress this year both cognitively and physically has been outstanding. We would like to thank the teachers at Harrisburg Elementary for all their hard work but especially we'd like to thank Mrs. Pam Hall. We believe that Mrs. Hall's dedication and love for Jack are what make success stories like Jack's possible.

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We must also thank Mrs. Asha Cooke, Jack's IA (individual assistant), who is with him everyday at school to assist him with his physical needs. We couldn't do it without you Asha!

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Now, on to 1st grade!

Cracker Casserole

2009-05-29T16:00:00.000-04:00

That got your attention, didn't it? It's actually broccoli casserole, but Jack won't eat anything green, so he thinks I make it with brown and green crackers. He actually believes it. Anyway, that's one of the dishes I made for our cookout when CAYLIE came. We had to tell everyone to not say the word "broccoli". It was rather amusing.

We had a great time. Jolene and the kids came over Saturday around lunch and I suggested Bojangles chicken, so they could experience some southern culture. I had a few concerns when we ordered because it's all spicy now. I asked a few too many questions and Jolene said they were going to spit in our food. Back at home we got ready for CAYLIE to come at 3:00. That gave us an hour to work before the others came. Jack practiced a few commands and gave her reward bones. Then Kyria and Heidi put on the special harness for Jack to use for walking and going up the stairs. It will take a lot of practice, but it went well. They have to develop a rhythm to their movements.

After we got up the stairs, she sniffed around a bit then went into Jack's room. We had her get up on the bed and snuggle on his blankets. She is borrowing Ike, who is a stuffed dog Jack's teachers gave him in preschool. It will carry his scent back to the prison with her.

People came and MaryLou finally got to meet Kyria and Heidi. Kyria founded paws4people and Heidi is the trainer for the prison in Hazelton, West Virginia. Karen, who is the trainer here in North Carolina, came with her family, as well as Eliot's brother and family and a friend from across the street. The last time the "paws" were in they got to meet Jack's godparents, Mark and Diane. Eventually we hope they get to meet many more people.

The next morning Karen and CAYLIE went to church with us. Pastor Ward and MaryLou introduced her to the congregation and of course, Jack wanted to talk in the microphone. It was also announced that approximately $2700 was raised at the men's BBQ auction for paws4people in Jack's name. In addition, we are hoping that Thrivent provides some matching funds. We'd like to thank everyone at Advent Lutheran Church in Charlotte that donated or participated in the cause.

CAYLIE was so good and stayed quietly in the pew. She did go up for communion though. She is after all, Lutheran now. Everyone was very kind and enjoyed petting her. It was sad to see her go. We may not see her until she graduates in the fall.

We just love CAYLIE and she will be so good for Jack. We still need a lot of help with fundraising. If you feel you can donate to such a wonderful cause, click here.

Mitchell and CAYLIE get acquainted

Kyria helps Jack with some training

Jack shows early success

The dynamic duo

Heidi, CAYLIE, Jack and Kyria

Jack at the campground

2009-05-27T07:48:00.009-04:00

We had the absolutely best 4 day weekend! My sister Jolene, her boyfriend Lonnie, his daughter Abby and my nephew Mitchell came down from Ohio. Jolene's dogs also came; Chiquita and Chance. Lonnie has gotten into Nascar, so the whole family came down for the race. Jack was so excited about going to the campground. He has never been and Ms. Cook (his individual assistant) gave him Jiffy Pop to use. They didn't have a campfire, so we did it in the camper. He loved it.

Anyway, I'm getting ahead of myself. They came on Thursday and got here a little early, so they came to the house. Lonnie backed that big camper into our driveway and Jack thought it was a bus when he came home from school. We let him ride in it to the campground, which was actually quite nice. Jack was fascinated with all the planes pulling banners and helicopters, not to mention countless buses going by. Very fun for a 6 year old. We all played corn hole, which is a game people in Ohio play. Jack won of course.

We spent some time Friday, Saturday and Sunday at the campground just hanging out. By Sunday he was done. Panic over bugs set in. I'm surprised it took him so long. He has developed an absolute fear of flying insects, especially flies. Until then he had a great time. He loved all the attention from his Aunt Jolene and kept her busy getting him snacks. He ate the entire time. Abby and Mitchell were good about letting him hang out in the camper and Lonnie played corn hole with him.

Our weekend continued with a visit with our precious CAYLIE which I will blog about next...

Jack's birthday

2009-05-18T21:03:00.005-04:00

Jack had a great birthday on Sunday. I've never seen a child consume so much sugar in one day in my entire life! It's amazing he slept Sunday night at all. Please enjoy the pictures.

A breakfast of champions - more sugar!
Asha and Seth met us at Chuck E. Cheese

Jack and Seth were both celebrating birthdays

The Chuckster came over to say "Hi" to Jack

(and yes, he's still eating sugar)

Later, we visited Kris and Shannon in their new apartment

Jack and Kris playing with the new Spiderman toy

even more sugar...

A weekend in Chapel Hill

2009-05-11T18:54:00.006-04:00

We had a great time in Chapel Hill this weekend visiting with Kris, Jake, Shannon and Natalie and their friends. We arrived on Friday and had dinner at one of our favorite places, Pepper's. Saturday, we went shopping and had a great dinner at The Carolina Inn. Late Saturday night, we took Jake out on the town to celebrate his turning 21 at midnight. Let's just say we REALLY celebrated. I haven't stayed up that late (or early) in years. On Sunday, we continued to celebrate Jake's birthday as well as Mother's Day. I know Lisa really enjoyed her Mother's Day having all three of her boys with her.

When we arrived home on Sunday, we received more really good news. Apparently the Advent Lutheran Men's BBQ auction went extremely well. They were raising money to donate to paws4people in Jack's name. We don't have a firm figure yet but it was much higher than expected and there could possibly be matching funds from Thrivent. We will let you know the final amount when we hear it.

I've loaded some pictures from the weekend below (in no particular order).

Kris and Shannon at the Carolina Inn

Jack with his friend at the Mother's Day picnic

Jack gets to sit in a blue Chapel Hill firetruck!

All of us outside Jake's apartment

Jake and Natalie at the Carolina Inn

Jack looking like Thing One or is it Two?

Jack and school

2009-05-04T19:50:00.004-04:00

Not much going on. Although, Lisa attended Jack's IEP meeting at school and because he is doing so well, he is not eligible for summer school. It will make the summer a bit harder for Lisa but that is great news as far as Jack's scholastic progress. Apparently, he is ready for 1st grade. Pretty amazing considering all he's been through. The medicine for appetite stimulation seems to be working well. He seems hungry ALL the time. Hopefully, we will see some significant weight gain soon. We are looking forward to visiting with Kris and Jake in Chapel Hill this weekend to celebrate Jake's 21st birthday. Woo hoo!!

2009-04-25T19:51:00.002-04:00

Unfortunately, today was the day we had to say goodbye to Bonnie. A family sponsored by Scottie Rescue of North Carolina adopted her. We learned that we were the first foster parents in this organization here in the Charlotte area. Anyway, it was hard to say goodbye to Bonnie, especially for Lisa as she had become very attached to her over the past couple of months. Here are a couple pictures.

This and that...

2009-04-24T17:39:00.002-04:00

Not much going on. I worked from home for the first time today saving 3 hours of drive time. We also closed on our home refinance. Our rate is 4.75%. Hard to believe the first house we bought was at 13%. Course, we'll be 70 years old before it's paid off. Oh well, the American way. The Scottie rescue believes they have found a home for Bonnie. The family is coming by tomorrow and may be taking her home with them. It will be bittersweet as we will miss her but I'm sure they've picked out a good home for her. Jack is doing well. He has started on a new medication to pick up his appetite and so far seems to be working. We'll keep you posted.

Spring break

2009-04-14T22:20:00.003-04:00

Jack is enjoying spring break. Not so sure about Lisa but Jack's behavior seems better these days so maybe it's not too bad. Bonnie had her staples out and is now running around as fast as her little feet can carry her. She is standing on her hind legs against the kitchen cabinets in hopes of reaching the counters. Wishful thinking. We are looking forward to dinner with Kyria, Terry and Karen from paws4people tomorrow night. Enjoy the pictures from Easter.

Jack with cousins: Daniel, Meghan and Jessica

Dog stuff....

2009-04-09T13:44:00.004-04:00

Bonnie is recovering well. She gets her staples out on Monday and then will have free reign in the backyard. She's so little that she might slip under a gate if we're not careful. Meanwhile, we received this beautiful picture of CAYLIE from paws4people. We are looking forward to having all our boys home this weekend. Happy Easter everyone!

Sad news

2009-04-02T11:21:00.002-04:00

It is with a great deal of sadness that we announce that the newborn puppy didn't make it. Lisa rushed Bonnie to the vet this morning when it appeared she was in distress. The vet said that it is not uncommon when small breeds only have a single pup for the pup to be too big for the birth canal. They were unable to revive the puppy after removing it from Bonnie. Bonnie is fine and will come home probably later today after she recovers from her surgery. Bonnie is a real sweet girl and we hope that she finds a good home soon. Thanks for all your thoughts and prayers.

Stay tuned....

2009-04-01T09:39:00.001-04:00

Just spoke to Lisa and apparently the birth is imminent. Hopefully, we'll have good news to report shortly.

Puppy Watch

2009-03-31T09:32:00.003-04:00

Jack continues to do well. He is still too thin, but the seizures are much better. We had 6 days with zero, but yesterday he had 2 very short ones at school. I think the same thing happened last Monday. Weekends can be tiring.

Our foster dog Bonnie is really fun and quite chubby. Her puppy is due very soon. We don't really know when, so Jack is helping me take her temperature every day. His job is to pull it out after we're done. For some reason, he really likes doing that. We have learned all kinds of things about whelping. Bonnie's temp continues to be in the normal range, about 100-101. When it drops to 98 or 99, birth should be imminent. She is only expecting one puppy. I can feel it move all around her fat tummy, so we hope it is born healthy. She was severely neglected before she was rescued.

Jack goes to the neurologist today and I hope Dr. Nelson will let us increase the baclofen again. We have been waiting for his seizures to calm down. His right arm has lost a lot of progress because the baclofen had to be reduced in case it was causing increased seizure activity. The pump is not supposed to do that, so we are hopeful the seizures will stay controlled with an increase.

We are very grateful to the men's group at our church for allowing proceeds from the May 9th barbecue to go to paws4people. Unfortunately we can't be there. Our son Jake turns 21 May 10th, which is Mother's Day. Our family will celebrate together in Chapel Hill. Jack will also be featured in an article for Lutheran Family Services highlighting his service dog, which we can't wait to get.

We'll keep you posted on the puppy...

Newest member of the house

2009-03-28T15:11:00.004-04:00

Whew! Sorry it's been a while but the last couple weeks have been crazzzeeee. I started a new job. I had my 29th birthday. And also... Ok, stop laughing you guys. Now, we know that many of you think we are crazy but you have to see the pictures below. We are fostering a little Scottish terrier named Bonnie. Now, as if that isn't enough, she is pregnant with a single pup. Our friend, Mary Lou, who connected us with the paws4people group, brought her to our attention. She was abused and we will be taking care of her and the pup until the little one is weaned. Then, they will go to a good home (other than ours, of course). Anyway, enjoy the pictures. If, by any chance, you are interested in adopting her or the puppy, let us know and we will get you in touch with Mary Lou.

More Monkey News

2009-03-18T10:40:00.003-04:00

Wednesday, March 18th

Since our last post, we have some hopeful news about Jack's seizures. On Saturday, he had one and on Sunday zero! Monday he had one, but yesterday he had a bunch of quick ones close together. Asha (his IA) thought he may have been tired from a long walk to his resource room with Ms. Davis. He didn't have any for me yesterday afternoon, so hopefully it was just a little setback. I'm still excited about the zero on Sunday. It's been at least six months since we had a seizure free day.

Last Thursday night Jake and Natalie came home for spring break. We had a fun visit and they left for Charleston on Monday morning. They came back again on Thursday and left for Chapel Hill Sunday. Kristopher was here last week for community week, which he has done four times this year for med school. He and Shannon, his fiance, went to Charleston as well and then on to Savannah for Saint Patrick's Day. He said the green fountain was cool. Apparently it's quite a party, so I hope they had fun. He'll come back to Charlotte today and visit with us tomorrow.

Eliot started his new job on Monday and is making the long trek to and from Columbia each day. If one more person tells us, well you have to do what you have to do, I may scream. I don't see any of them driving 200 miles a day to work! We are very grateful though and he thinks he'll like the job. He hopes to be closer to home as soon as possible.

Jack is well, but still too thin. His appetite picked up after he stopped taking Toperal, but he still eats less than he did. We are supplementing with protein drinks. His neurologist also has him on B7, omega 3's and Levocarnitine. His behavior has been pretty good as well. His play therapist comes today after school and he loves her. Next week we have his IEP. I'll keep you posted...

L & E

Status of Jack's seizures

2009-03-12T09:19:00.003-04:00

The last few days have been very encouraging. The number of daily seizures is down to about 2-3 per day. We aren't aware of ANY seizures yesterday. He has been battling a runny nose but appears to be fine today. Lisa, on the other hand, had a nasty flu bug that put her in bed for the better part of a week. She appears to be on the mend now, though. I have been spared (knock on wood) and am looking forward to starting a new job on Monday. It has been a long four months of unemployment and I am ready to go back to work. Lisa is ready too, by the way. :) We're hoping that we can get back to increasing the baclofen dosage soon if the neurologist and rehab doctor agree. That's all for now.

A great time!

2009-03-07T09:42:00.008-05:00

We had a great time hosting all the "paws" people last night. We sure appreciate everyone coming and hope they had a good time as well. Jack was in his element with all the attention and seemed to handle getting to bed late and having to get up early this morning for Saturday school. Today was a make-up day for an earlier snow day.

Karen brought SOLOMON and introduced him gradually to Maggie and Moe. Moe was a bit "put off" at first at having a strange dog in his backyard but got over it eventually. When it came time for dinner, SOLOMON disappeared under the dining room table and Moe seemed very puzzled that he had somehow vanished. Maggie, being the alpha dog, also had a rough start but soon handled SOLOMON's appearance like a champ.

Thanks again for everyone coming. When Kyria was leaving, she promised Jack that she would take care of CAYLIE. Have a safe trip home everyone.

And finally, a special get-well soon to Terry.

Some pictures from the evening...

Kris on the Isle of Wight (2008)

2009-03-06T08:18:00.003-05:00

For those of you who might be interested, you can read about Kris's trip to the Isle of Wight last summer for his internship.

Jack, this coming weekend and snow....

2009-03-02T18:46:00.007-05:00

Good news on Jack. Although the number of seizures he is having still remains higher than we'd like, his appetite is returning. Now that we've stopped the Toprol, that seems to have done the trick.

We are very excited to have Kyria, Candace and Karen (say that three times real fast!) and others for dinner this Friday. We are hoping that our boys will be home also. Sounds like we might have an extra canine friend around to keep Maggie and Moe company. We are very much looking forward to it.

Last night and this morning we got a late winter snow amounting to about 3 inches in our neighborhood. (This is comparable to 3 feet in WV.) Jack was home from school and a lot of things were closed. Anyway, it was all gone from the roads by early afternoon. I have some pictures below of a short walk we took with Maggie and Moe. Talk again soon. Enjoy the pictures.