Update on Jack

First of all, I know, I know, it's been a couple of months since my last update and I am so slack when it comes to blogging.

But, that being said, a lot has happened in the past couple of months. After going back and forth on a decision for a while, we have decided to build a new house in Kensington Forest, just a mile down Rocky River Road. It will be a ranch with a bonus room over the garage. Jack's bedroom will be pretty big and will have all ADA certified equipment installed. i.e. no-lip shower, comfort height toilet, grab bars, etc. etc.

We will miss Bradford Park so much (almost 18 years), but it's time to move on.

We plan to close on 05/30 and are hoping to rent a house in Kensington Forest for about 4 months while they build our new house.

As far as Jack goes, he continues to struggle with control of his behavior. Some days are good, some days not as good. It's a work in progress.

Some very good news......Jack was approved for CAP/C, which is part of Medicaid. This allows for us to have a part time nurse in our home for 20 hours/week. The nurse's name is Martha and we are very pleased so far with her work. She is only 17 but is a very hard worker and seems willing to deal with "you know who".

When Martha arrives, it's like a miracle. A lot of the stress just melts away. It's awesome.

That's all for now.

Good news!

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

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

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

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

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

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

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

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

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

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

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

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