Friday, August 2, 2013

An occupied mind

With his surgery pending, Bojan got a package in the mail.  It was from a dear friend of ours in NJ. 


Bojan was surprised to see a package for him when it wasn't his birthday.


Alyona had to stop and see what was happening as well as Logan.  Not sure what the look on his face was.

Totally upset I didn't catch the initial reaction of Bojan.  He was ecstatic!  For those that don't know, Bojan is a huge Dr. Who fan.  This was a 26 disc set.  Enough to keep him busy for after surgery.  And yes, he's already watched a few.


Bojan got another package from the same family.  He was ready to see what was inside.



A brain teaser book!  VERY cool and he worked on this on his trip to Shriners.  He also received a magic kit which is right up his alley as well.  Bojan truly loved each thoughtful gift.  Best part is that this has occupied his mind and help with healing.  Getting your mind off the pain does help a bit.  

During this time, we have had many thoughtful friends come help us out.  My cousin Allison's husband brought us plywood to help build the ramp for his wheelchair.  My friend Rebecca and her daughter stayed w/ us when Bojan and Warren left to help me deal with the emotions of the kids left here.  Traumatized children take things differently than neurotypical kids would.  Another friend Jennifer came over one morning and we all cooked breakfast together.  That was so much fun.  Another friend Dale delivered pizza to us one evening.  Yet another anonymous family donated an entire dinner not only for our family, but the other two families and kids visiting that evening.  Then, we all swam in the pool that night.  It was an awesome time of fellowship together.  And today, 3 friends of mine, Jennifer, Janet and Kathy took 7 of my kids to the lake w/ their kids so Warren & I could help Bojan and get paper work done.  We truly have been blessed this week by such giving and loving people.  They have made such a difference in our lives during a difficult time.  Can not thank them enough for caring so much and taking time out of their lives to be with us and the kids.  Meant a lot to us. 

Thursday, August 1, 2013

DISCHARGED!!!

Quick note as dealing with schools today and many other things at once.  Bojan has been discharged.  They are being picked up and on their way home.  He had a better night and pain is now more manageable thank goodness.  At home, everyone has returned.  Getting things done today and waiting for Bojan.  Got to go.  Just wanted to share Bojan is coming home and now things should start getting back to normal. 

Wednesday, July 31, 2013

2013 Family Symposium on FASD

Everyone is invited to attend at NO COST!  This is a remarkable opportunity to learn so much more!  The information here will be invaluable.  Truly, if you have the chance to attend, please do so.  I am copying and pasting the information.  Any questions, please contact Kathy. 



2013 FAMILY SYMPOSIUM
on
Fetal Alcohol Spectrum Disorder

September 21, October 5, and November 16

8:30am - 12pm

Carolina Institute for Developmental Disabilities
101 Renee Lynn Court
Carrboro NC

Fetal Alcohol Spectrum Disorder (FASD) is an umbrella term describing a range of effects that can occur in children whose mothers drank alcohol during pregnancy. The effects can include behavioral, physical, and learning problems. Living with an individual with an FASD is difficult….to say nothing about how difficult it is for the person with an FASD. This symposium has been developed to assist families in understanding the effects of alcohol in utero and how families can make a difference for their loved one and for themselves and other family members.

This free Family Symposium is sponsored by the NC Triangle FASD Support Group which was established in 2010. Parents involved as presenters and panel members are affiliated with this group.
Many thanks to Carolina Institute for Developmental Disabilities for providing space to present this series of workshops for families with a loved one with diagnosed of or suspected Fetal Alcohol Spectrum Disorder. Delivery of this symposium is partial fulfillment of objectives set forth by the FASD Collaborative of North Carolina.

As noted above, this Symposium is free for participants. There is, however, a limited amount of space. Please register by emailing the attached registration form to kathyhotelling@gmail.com

Each day will begin with registration and networking with other attendees over coffee. The families you meet will undoubtedly be an important part of these workshops, so try to arrive at 8:30! Although you need not attend all three mornings, each session will build on previous presentations. The parent panel will address the morning’s topics from their experience, as well as respond to questions from the audience.




September 21st Signs and Symptoms: How Behavior and Testing Contributes to your Awareness and Understanding of Fetal Alcohol Spectrum Disorder

8:30 – 9:00am Registration/Networking/Coffee

9:00 – 10:00am Ramifications of Exposure to Alcohol in Utero

Presenter: Becky Brantley, Parent

After a brief review of how alcohol affects the brain of the developing fetus, this presentation will focus on the behavioral symptoms resulting from brain damage, as well the behaviors that arise from the lack of fit between an individual with FASD and the environment around them. The reasons to get a diagnosis will also be addressed.

10:00 - 10:15am Break

10:15 - 11:15am What is Neuropsych Testing? Using Results on Behalf of Your Child

Presenters: Stephen Hooper, Ph.D., Carolina Institute
for Developmental Disabilities
Andrew Preston, Ph.D., Chapel Hill
Pediatric Psychology
This session will guide you through the neuropsychological evaluation process, including goals, types of tests, and procedures that are involved.  How are results used to understand the cognitive profile of children with brain-based conditions? How can you use the results to develop appropriate treatment plans with pediatricians, schools, and caregivers? 

11:15am – 12:00pm Parent Panel





October 5th Effective Behavioral Interventions

8:30 – 9:00am Registration/Networking/Coffee

9:00 - 10:15am Neurobehavioral Approach to Interactions

Presenters: Kathy Hotelling, Ph.D., Parent and
Consulting Psychologist
Anne Brantley, MS, Parent

This session will discuss the reasons that traditional parenting techniques do not work with children with an FASD, as well as provide a neurobehavioral perspective that lays the groundwork for alternative strategies that are shown to be effective.

10:15 - 10:30am Break

10:30 - 11:15am Applying the Neurobehavioral Approach

Continuation of earlier session with specific examples of home and school situations that can be approached from a neurobehavioral perspective.

11:15am – 12:00pm Parent Panel


November 16th Supports for Moving Ahead

8:30 - 9:00am Registration/Networking/Coffee

9:00 – 9:30am Resources to Increase Success

Presenter: Kathy Hotelling, Ph.D., Parent and Consulting
Psychologist

Learn about the existing array of resources that could support you in helping your loved one navigate the world throughout her/his lifetime.

9:30 – 10:15am The Emotional Rollercoaster
Presenter: Beth Hutson, Program Coordinator, GCF Family Support Services
Parents or caregivers of children with special needs often feel as if they are on an emotional roller coaster. They may experience stages of grief and chronic sorrow. Learning effective coping strategies empowers caregivers of children who have an FASD.

10:15 – 10:30am Break

10:30 – 11:15am Taking Care of the Caregiver

Presenter: TBA

In order to parent any child, especially a child with challenges such as FASD, it is extremely important to be healthy, physically, emotionally, and spiritually. Yes, we know you “don’t” have time, but you must make time! It is essentially for you, your child, and other family members.

11:15am – 12:00pm Parent Panel




Registration Form

2013 Family Symposium
on
Fetal Alcohol Spectrum Disorder



Name ______________________________________________________________

_______________________________________________________________


City _______________________________________________________________


Phone _______________________________________________________________

Email _______________________________________________________________

________________________________________________________________

Which days do you plan on attending? (all will be most beneficial, but not required)

___ September 21 Signs and Symptoms: How Behavior and Testing Contributes to your Awareness and Understanding of Fetal Alcohol Spectrum Disorder

___ October 5 Effective Behavioral Interventions

___ November 16 Supports for Moving Forward


Save or scan and email this form to kathyhotelling@gmail.com

or

Mail completed form to

Kathy Hotelling
271 Fearrington Post
Pittsboro, NC 27312

Max's drawings

Though Max worked today & is working tomorrow, he has had a lot of spare time to draw lately.  So, wanted to share a few he has done.  Just two to share but think it shows how he's grown as an artist. 

Ignore Max's expression, or lack there of, b/c I had just woken him up.  Teens.


He drew some pirates.  Anyone recognize the movie character?


A closer up view of their faces.  I just thought the detail was great.


This is an unfinished drawing. He decided to draw a massive pipe organ in a church.  This is the halfway point of his drawing.  He does ALL his work w/ just a pencil & a straight edge.  Pretty cool I thought.  

Well, need to get going.  I'm avoiding paper work like the plague.  But, needs to get done so off the computer I go. I know I have a ton of updates but Bojan has been priority and back & forth calling, emails, etc. to get everything in order at Shriners, insurance company, etc. has been all time consuming.  Hopefully, normal will return in the next couple of days.

Bojan's update-- turn of events...ups and downs

Hey, taking a few things off Facebook.  Been HARD day today for everyone
involved.  Here goes:

Bojan update: NOT good. He's been in severe pain and had three shots of
morphine thus far and it has not even put a dent in it. Please pray for
quick healing & for pain to be under control. On the home front. No
sleep from me. Let Nik stay in my bed since he was upset about his
sisters spending the night elsewhere. My two oldest are working today.
So, a few extra prayers for Bojan would be very much greatly
appreciated. We just want the pain under control for him.

Bojan update #2 for today: Just talked to Warren. They already have a
call into the anesthesiologist to see what might be happening here/ what
they can do. He's been moaning in agony for hours and Warren said about
chewed off a pillow. Bojan typically has a high tolerance for pain even
right after surgeries. This is VERY unusual. He has received IV pushes
of morphine(3 doses) and another narcotic as well. Nothing touches it a
bit. I don't know what they'll do at this point. My guess is maybe
another block? Not sure. Hard not being there. Keep the prayers, good
thoughts and good vibes coming his way today please!

Bojan update #3: They are trying to manage the pain. They've got it down
to instead of continual wailing in agony to every two minutes about in
agony. Still in severe, severe pain. They've given him morphine,
narcotics, a patch, Oxycontin, and I have no idea what all else. At
this point they may try Lerica (can't spell it) which deals w/ the
nerves. They're trying all sorts of things at this point trying to
manage the pain. That's their only focus right now. He is obviously not
coming home today. Kids are worried here. They are nervous. When one is
gone it is very, very difficult on the ones left behind. They really
have a group mentality at times. Continued prayers. We have to stay
close to home today. Thank you to whoever brought us dinner last night
and things to serve for lunch today. Helped way more than I think you
realize. Truly, didn't expect the turn of events. Once he's stable,
going to try to get to the store today. Pray for continued healing and
to quickly get this pain managed ASAP. Thank you.

Bojan update #4: Thanks for all the prayers. Bojan is finally getting it
to a dull throb. He even was able to get a bath himself which is HUGE.
Patch on him is supposed to last a week. Plan currently is for him to be
discharged tomorrow. Shriners will pick them up about noon or so. 5
hours home. Going to be a long few days still. Relieved it's getting
better. Keep the prayers and thoughts coming though. We're not out of
the woods yet. But looking good for now. Relief. Now, to get the
homefront calmed down. LOL.

I may try to get to the farmer later today.  I"m just exhausted at this point.  Really am.  We're all vegging out at the moment.  Yana really helped out today cleaning the house.  I can't thank Shriners enough for doing what they do and trying to manage all the logistics of getting Bojan and Warren home.  It's a relief to be sure.  So plan for now is him to come home tomorrow and be discharged in the morning.  That's the plan.  Please, let's stick to the plan!  More later. 

Tuesday, July 30, 2013

Bojan's Surgery Today

Sorry I've been so absent but life got a bit chaotic and carried away.  Finally returning to normal and have to do some catch up stuff but for now, Bojan's surgery today.  Bojan and Warren left for Shriner's on Sunday afternoon.  Pre-op was Monday.  Tuesday was surgery at Shriners for the leg amputation.  He went back at 10:30am and surgery was two hours.  They amputated above his scarring so about midway up the lower leg.  Below knee and this is what was expected.  This is a huge deal for Bojan.  For the first time in his life, he'll be able to be free of pain from walking, be able to participate in sports if he desires, not have to use crutches and just be able to do so much.  First time to walk without pain is the huge moment he's waiting for.  Don't blame him.

Bojan's surgery went well.  He's in recovery right now.  If, and BIG if, he has pain under control, they could release him as early as tomorrow.  If not, it will be Thursday.  So hoping it will be tomorrow.  Been a long few days here.  Remember, some of mine have PTSD so when events like this take place, it's difficult at best.  Typically during surgeries, Warren and I can easily tag team.  With them being in a whole other state, it doesn't work out all that well.  I will remember this for next time and have at least one other person here to be sure.  Just would run smoother.  Can do it on my own but I'll be honest, I'm just exhausted.  Really am.  Reason I say next time, is Warren is filling out the application while he is there for Alyona and the scoliosis team. 

Okay, started this earlier today.  Hey, life happens.


Bojan standing on his leg one last time.  He posed for the pic w/out the crutches he was regularly using b/c it hurt so bad to walk on it.  Love how Alyona is standing and Alaska has taken over the chair.  

Bojan's leg.


The foot that never healed, was always in pain, swollen and purple every single night and beyond repair.  It's gone now.  I tried to upload his amputation photo but it won't upload.  Have to get Warren to do that one I suppose.  Bojan is doing well tonight.  No pain even after block wore off.  That's fantastic.  He's eating and not vomiting.  More great news.  Everyone said he can leave tomorrow if nothing changes.  Our issue will be trying to find him a ride home tomorrow.  If not, they'll have to stay an extra night.  Truly though, I need them home tomorrow.  And, Bojan misses everyone and vice versa.  My kids are VERY connected to each other and when one is gone, it's hard for them to deal with.  More tomorrow.  For now, need some sleep. 


FASD Community

Wanted to share something that others in the FASD community may be interested in.  Here is a link to it:  FASD Community .  This would be wonderful if places like this could be built for children like ours.  This is something Warren and I have thought of doing for a long time as I've mentioned before on here.  I don't know where the next few years will take us, but have a feeling it will be an interesting ride.  Just wanted others to check it out and maybe some of you would want to volunteer.  You never know.

KOA reply

As you know, we had an experience at the KOA in Nashville, TN.  I wrote the national office and the Nashville office itself.  Here is the response I got from the National office:

Case Number: XXXXXX

Case Summary: External Feedback Entered - Classified as 'Specific KOA Kampground-Feedback'

Last Reply...
Dear Edward and Stephanie

Thank you for taking the time to share your concerns about your experience with the Nashville KOA. We're sorry you were unhappy with your experience.  Your feedback is important to us because it allows us to make improvements to ensure your camping experience is a GREAT one.

Please know that we at the KOA Home Office and the managers of each of our independently operated campgrounds appreciate your loyalty to KOA and thank you for your feedback.  We will be sure to pass along your concerns to the management at the Nashville KOA for their review.

Our records are indicating that a refund in the amount of $60.26 was issued to your credit card ending in XXXX on 6/26/2013.  Please watch your statement for this credit to post.

Once again, we thank you for sharing your concerns with us.

Sincerely,
Tami


Your Kamper Services Team
vkrservice@koa.net
www.myvaluekardrewards.com
www.koa.com
888-562-0000


Alright, a few things.  Yes, a refund of $60.26 was given.  HOWEVER, I paid way more than that to stay there!  We booked for 3 nights.  I must find the receipt of what I paid.  I prepaid and then paid when I got there as well.  Think I paid something like $121 or something to that effect when I got there in addition to what I had prepaid. I will have to double check that but do know for FACT it was more than $60. 

Now, the Nashville KOA called me on the phone in person to apologize and kept reiterating it wasn't their fault and that they had 4 RV accidents in a week  just this past week.  He said he would have hated for someone to run over the kids.  I still was not satisfied w/ answers given when I said well, you could have moved us to two RV sites side by side and put the tent on one and rv on the other.  Remember, we passed those empty sites on the way out.  He said well, some rv's would just pull through and not see the tent.  HELLO!  not see a huge 8 person tent in front of the?!  Plus, if it isn't their # site, they'd have no reason to pull through.  Especially, in the middle of the night!  URGHH!!!  He did say he will check the amount and refund the rest if it is due to us.  I was honest from the get go of what we needed.  If you could not do it, then say so.  I've already contacted another campground for our summer vacation for next year.  YEAR in advance and told them our needs.  They said no problem, just contact us in April and remind us the needs so we can put you in the bigger spot.  They said it won't be right on the lake though. I said I don't care, just needs to be together.  She said not a problem.  Again, if honest and tell them your needs and you're willing to pay for extra people, or tent, then make sure it can be done.  If not, tell the people and this can all be avoided.  Rant over. 

Sad part is, I have loved the other KOA's we've been to.  Hate for one bad apple to spoil the bunch.  We are due to go to the Cape Hatteras KOA late August.  I'm thinking of calling and reminding them our situation.  I did back in December and she purposely gave us a site on the end behind the dune.  Won't be in anyone's way AND she said have plenty of room for the tent.  Again, honesty of our situation and willingness to make sure we do what they ask is all I'm saying.  I know there are many, many other big families who camp.  Any others have these issues?  just curious.

The List

What would you do if you were presented with a child with all these dx's listed below?  Would you take a leap of faith or no?  There is a reason I"m asking this tonight.  We had to fill out an application listing one of our childrens' dx's.  I looked at this listing thinking OMG!  That's a lot of stuff.  But then, then I looked up at that same kid.  And said "that can't be true.  Just look at her!"  Thought this to myself.  She's perfectly fine.  So why are so, so many scared off by dx's?  I don't think we personally had a greater leap of faith so to speak.  You just seem to know when a child is yours or not.  Instead of this list I see petite, fun-loving, stubborn, preteen, happy, thriving, smiling (when not grounded), high heel loving, book hating, music loving, awesome girl.  I know it's a rarity a post all the dx's we have.  But I had to list them out tonight and thought maybe others would benefit and discover that what at first seems scary, really and truly isn't a bit.  Just kids growing up like everyone else. 

FAS
Failure to thrive
ONH (optic nerve hypoplasia)
Radial articulation in both arms
Developmental delays
Scoliosis
Microcephaly
Strabismus
ASD (atrial septum defect)
Idiopathic short stature
Delayed bone growth