Tuesday, December 30, 2014


Last week we had the honor of meeting Frayda from Feebee Photography. Frayda along with Jewish Caring Network arranged to come to our home to take family photos. 

It was a wonderful is a link to Frayda's blog ...along with some of the photos...

I hope you enjoy them as much as we did

....thank you Frayda and Jewish Caring Network for the memories.

Sunday, December 28, 2014

Dear Sibling to a Child With Special Needs, Let Me Tell You Why You're Amazing

Hey there,

I heard you're the sibling to a child with special needs, and I wanted to write you a letter explaining why you have a one-up on life. I know your life might seem hard or different from your friends, but trust me, you most definitely will be more prepared for this life than anyone else. Let me explain...

I heard you deal with more than any child should. Your parents spend a lot of time away from you. You know they're taking care of your sibling, possibly bringing him to the doctor. Maybe your sibling is admitted in the hospital often; your parents might be on the phone taking care of insurance business or even physically caring for your sibling. I know, my friend. You see this more often than not. You see the love your parents have for your special sibling, and it's being embedded into your heart. You see the patience they exhibit when caring for him, and it's being buried into your soul. You see that your parents never stop trying to get what your sibling needs, and it's being ingrained into your mind. You see your parents exhaust themselves so your sibling and you are well taken care of, and you're leaning from this. You may not know it, but all of these little things are teaching you traits of how to be an amazing person. 

A Ravens Fan early on...not by choice....

Always using each other for something....trying to figure out a way to get into trouble.

Happy 1st birthday!

I'm certain that being the sibling to a child with different needs is a struggle. I know you have those moments where your heart stings with jealousy, where you're worried sick over your sibling. I know you have those moments when you get mad because you can't go to all the birthday parties you want to. All of those times are totally understandable. You have a right to be upset every now and then, but I can bet that you can think of some pretty cool things you have in your household that your friends don't. How about all the cool equipment your sibling has, huh? I know you've climbed into that wheelchair or played with his super cool assistive technology toys. How about getting to see your sibling reach a milestone and that proud feeling that overcomes your body? You get to experience a friendship like no other. Your sibling completely and utterly trusts and loves you with a love that can penetrate the coldest heart. They look at you with those beautiful eyes and know you're there for them no matter what. The bond you have is indescribable. You're their sibling, their friend and their protector. Your sibling might not speak verbally, but we both know your hearts together carry on conversations us adults could never possibly understand. And I tell you what, we're so extremely jealous.

Who knows what they are doing there...but it was a photo op!

Happy Halloween...Mickey and Minnie.

Has always had an "old" soul...maybe this was just another way he was showing it.

Did you know your parents watch you and your sibling's interactions on a daily basis and their heart literally wants to burst out of their body with pride and love? They see everything you do for your brother. They notice when you walk by and give them a quick kiss, stroke their hair or give them a hello. Your mom and dad love to witness you sticking up for your special sibling or when you go out of your way to make sure he is included in everything. They quietly observe you as you help with therapies, put oxygen masks back in place and hold hands during tests or doctors visits. Your parents recognize every time you perch yourself on the counter to help prep medicines or bring them a diaper, a syringe or whatever else they need. You do such a crazy amazing job helping your parents. It surely takes a wonderful little girl to do what you do on a daily basis. I'm sure they tell you thank you, but sometimes if they don't just know they are beyond thankful for you.

Happy 11th birthday!

Making funny faces.


But most important of all, my dear one, the reason you are going to rock this life: You know true love, you know true heartache and you know what's truly important. You have lived a life that takes a strong heart and a strong mind. You will mature much faster than your schoolmates (don't be too hard on them), you'll exhibit compassion that astounds others, you'll know more about healthcare than 95 percent of adults you pass on the street, and you will most definitely have a wicked sense of humor that will enable you to keep life joyful no matter what. When you were introduced to your sibling with complex needs for the first time, that moment in time is pinned in the stars, for it was then that your destiny was determined. You will be an awesome human being and you're going to change lives for the better...all because you were the sibling of a child with special needs. Rock on, my brave friend.

True Love!

  All my love,

The momma of a child like you and your special sibling

Friday, December 26, 2014

Isaac is Worn Out

Isaac is worn out from all his adventures this year so he is heading into his box for the year.  He is going to rest up until Hanukkah 2015 when he plans on getting into some more trouble.

Tuesday, December 23, 2014

Toilet Paper oh Toilet Paper

Well we hope you had as much fun with Isaac as we did...until next year. Hoping Hanukkah was good for all those in our village who celebrate. And for all of those who celebrate Christmas....have a very Merry Christmas.

Monday, December 22, 2014

Out and About

Over the past few weeks we have gotten out and about a little more then usual.
We went to our cousins house for Thanksgiving. This was the first Thanksgiving we have been able to go to in a while. Someone in the family has been getting over a cold, so Ian and Brian stay home while Becca and I would go. It was nice to have the whole family together .... it had been a while.
Chai Lifeline had a wonderful bowling night. It was great to see some old Chai lifeline friends and meet some new ones. The kids had a good time bowling.  

Becca with her big sister.
All us doing Ian's favorite thing...sticking out our tongues. 
 Ian is with his big brother.

We also went to our dear friends, twins B'Nei Mitzvah. The twins did a fabulous job. Brian, Becca and I went to the service and then came home for Ian to go to the party.  It was good to see old friends we have not seen in a while and catch up. 

Going for a Ride

Well Isaac held true to his character last night and decided to pull some friends in for the ride. After all, who doesn't like riding down the banister with friends!

Sunday, December 21, 2014

What is This Big Black Box Hanging Around?

So Isaac has been looking around the house while we have all been sleeping, he kept seeing this big black box hanging around. He decided last night to find out just what it was...but he needed some help as it was big....
Becca was not very happy with him for touching her things.

Saturday, December 20, 2014

Who Likes Spiderman More?

 So who do you think likes Spiderman more....Ian or Isaac?
We are not sure but Isaac decided he wanted to let Ian know he is not the only Spiderman fan in the house.

Thursday, December 18, 2014

Dreidel, Dreidel, Dreidel

It is no fun to play dreidel Isaac got a friend to get into trouble with. 

A Little Tired

Isaac was a little tired last night and feel asleep.
We are hoping he has gotten a good night rest and will be ready for some more adventures to finish out the Hanukkah season.

Wednesday, December 17, 2014

Hanging Around As Part of the Family

We have been enjoying seeing where Isaac is going to end up each morning. The kids are loving seeing the trouble he can get into. He wanted to hang out last night...

Happy Hanukkah from our family to yours.

Tuesday, December 16, 2014

Isaac Was A Little Hungry

After all there are still a lot of girl scout cookies in the house...and boy are they good.

Monday, December 15, 2014

What's It All ABOUT?

Everyone's always on one of these things. Isaac wanted to see what it was really all about. 

Saturday, December 13, 2014

This Family Is Crazy...

This family is crazy, get me out of here...wait a minute I can't get out this way...

Friday, December 12, 2014

Hanging Around For The Night

As Becca said this morning when she saw Isaac, "Now its getting good, he's being mischievous!"

Becca's 6th Grade Winter Concert

We all made it to hear Becca play in her Winter Concert!

She really is on the stage, some place behind the conductor!I am not sure what Ian is thinking as he is looking at Becca. Regardless of what it is the picture is priceless. She was very happy that Ian came. 

Everyone did well on the outing and enjoyed some holiday music. 

Isaac with a Trache

So last night Isaac decided he wanted to see what is was like to have a trache.

Thursday, December 11, 2014

Day 2 Our Maccabee

Isaac decided he wanted to see what this telescope is all about. Oh wait that's not what it is, it's a kaleidoscope. He thought it was pretty cool. What kind of trouble will he get into tonight?

Wednesday, December 10, 2014

The Maccabee on the Mantel

Growing up Jewish, there were traditions our non-Jewish friends had that we wanted to participate in. Well Becca and Ian are no different in that regards. Becca came home from a girl scout event one day last week, talking about the Elf on the Shelf. So Brian and I did some research...not hard to do since I work at a synagogue...just contact the person in charge of the gift shop. Low and behold we have The Maccabee on the Mantel! Some Maccabees are "magical" and they go off by themselves to hide every night (do they fly, do they walk - who knows?) and every morning it is up to the children of the house to discover where their Maccabee has landed. Some Maccabee help make the latkes with his family. Some get to play dreidel with his family and light the menorah. 
So what about our Maccabee...well 
Becca and Ian worked together and decided to name him Isaac Alexander Scher. And just what did Isaac do last night....

He decided to play with their legos!

What will he do the rest of the nights....

Tuesday, December 9, 2014

Asks Some of the Craziest Things

So a little bit ago, I was laying with Ian. We were talking about our day and how they were. He said he did awesome in school today and I told him work was OK. Ian says "Can I ask you something?" "Sure" I said. "Did you ever have a boyfriend?" he asked. "Yes, why are you asking?" He said, "I don't know". So we keep talking about other things. Brian then comes in the room asking what are we talking about. I told him what Ian asked me. Ian looks at Brian smiling and asks him "Have you ever had a girlfriend?" He says, "yes". Ian then looks at him and says "What were their names?" So Brian answers him and Ian starts to laugh. Next he asks me some names, I tell him and Ian laughs. We are not sure why he is laughing but it is good to see him laugh. These are the crazy wonderful conversations we will remember.

Sunday, December 7, 2014

Losing Part of Ourselves

Sitting here thinking back to my high school reunion last weekend, going out with my sister-in-law, niece and Becca to the mall the other night and talking to a friend this afternoon, I realized I have lost a part of myself over the years. I am sure, Brian has as well...Becca has probably had a hard time figuring out who she a really hard time in a pre-teens life. I would think given our situation this is "normal".

Leaving the house is getting harder for Ian, we don't go out much as a family or at all. One of us is always home with Ian. We are going to start working on him using his in-line humidifier more often to see if we can get him out a little more. Getting out will do all of us some good. When you are in the house most of the time and you do get out, you feel strange. I remember when the twins were first born and I came home, Brian and I had to go to Target, I felt as if everyone was staring at me. It was as if people knew I was on bed rest and just got out, as well as that my babies were in the NICU. Just like riding a bike, you remember how to do it. As my outings went on, it did get a little easier to be out. 

When talking with others, you want to talk about other things and you try, very hard, but then you realize, it has become your life, it has become you. As much as you try to be more, to be about other things, you aren't. It has become you, it starts to define are the caregiver of a terminally ill child and your life has become that. It was hard once I realized this because over the years I have tried not to become this, to not lose myself. I have also realized this was out of my control, no matter what we would have done, it would not have made a difference. This has become our life. I know this will change, however, I don't like what needs to happen in order for the change to time will I become something else and how will that feel.

For now, we will continue with our lives as they are, taking care of each other in whatever manner we need to.

Saturday, December 6, 2014

Next Steps and Decisions

Ian telling us he did not want to go to the hospital anymore and was OK going to Heaven threw us for a loop.  It pretty much knocked us down...hard.

Brian and I have had many conversations over the past few weeks with each other. We have also spoken with other parents who have lost a child, members on Ian's Gilchrist team, Becca and Ian. Trying to decide what our next steps could be while keeping Ian's wishes in mind as well as our wishes for him, Becca and ourselves as his journey continues has not been easy. These conversations have brought tears, laughter, smiles, as well as more tough decisions.

Medically Ian is stable. The changes we are seeing are with his outlook and enjoyment of things.  Ian being OK going to Heaven and not wanting to go to the hospital is a major shift. The smiles and laughter are not there as much, oh we still get them, just not like we used to. There are times when you can see the exhaustion on his face.

So what to do? We have decided we are going to try to care for him at home if/when he gets sick again. We have been given some more tricks for when this happens along with the knowledge that his Gilchrist nurse will be over to help us assess the situation and make decisions on what to do...continue treating at home or go to the hospital ....we will have to continue to take it one day, one minute,  one second at a time.

"For now, remember this: When you feel low on smiles and you feel it’s over before you’ve had a chance to begin, dig deep and remember your purpose. Laugh loud, live in the moment and dream big. And most of all, remember you matter in this world."

Sunday, November 30, 2014

The Invisible String --- By: Patrice Karst

The Invisible String is a simply story that reminds children and adults they are never truly alone. As the mother in this story explains, "People who love each other are always connected by a very special String made of love. Even though you can't see it with your eyes, you can feel it deep in your heart and know that you are always connected to the ones you love."

We have been having this conversation, in different ways, around our house quite a bit lately...I decided I wanted to share the story with you.

Liza and Jeremy, the twins, were asleep one calm and quiet night.

Suddenly it began to rain very hard. Thunder rumbled until it got so loud that it woke them up.
"Mommy, Mommy!" they cried out as they ran to her.

"Don't worry you two! It's just the storm making all that noise. Go back to bed." 
"We want to stay close to you," said Jeremy. "We're scared!"
Mom said, "You know we're always together, no matter what."
"But how can we be together when you're out here and we're in bed?" said Liza.

Mom held something right in front of them and said, "This is how."

Rubbing their sleepy eyes, the twins came closer to see what Mom was holding. "I was about your age when my Mommy first told me about the INVISIBLE STRING."

"I don't see a string," said Jeremy.
"You don't need to see the Invisible String. People who love each other are always connected by a very special String made of love."
"But if you can't see it, how it's there?" asked Liza.
"Even though you can't see it with your eyes, you can feel it with your heart and know that you are always connected to everyone you love."

"When you're at school and you miss me, your love travels all the way along the String until I feel it tug on my heart.:
"And when you tug it right back, we feel it in our hearts," said Jeremy.

"Does Jasper the cat have an Invisible Sting?" Liza asked. 
"She sure does," said Mom.
"And best friends like me and Lucy?" asked Liza.
"Best friends too!"
"How far can the String reach?"
"Anywhere and everywhere," Mom said.

"Would it reach me even if I were a submarine captain deep in the ocean?" asked Jeremy. "Yes," Mom said, "Even there."
"Or a mountain-climber?"
"Even there."

"A ballerina in France?"
"Even there."
"A jungle-explorer?"
"Even there."

"How about an astronaut out in space?"
"Yes, even there."

Then Jeremy quietly asked, "Can my String reach all the way to Uncle Brian in Heaven?"
"Yes...even there."

"Does the String go away when you're mad at us?"
"Never," said Mom. "Love is stronger than anger, and as long as love is in your heart, the String will always be there."

"Even when you get older and can't agree about things like what movie to see...
...or who gets to ride in the front seat....

...or what time to go to bed.
Oh! that's right! You two should be in bed!"
And with that, they all laughed as Mom chased the twins back to their beds.

Within a few minutes, they were asleep even though the storm was still making the same loud noises outside.
As they slept, they started dreaming of all the Invisible Strings they have, and all the Strings their friends have,
and THEIR friends have,
and THEIR friends have,
until everyone in the world was connected 
by Invisible Strings.
And from deep inside, they now could clearly see... one is ever alone.

This book has been read around our house for the past few years and comes out from time to time....sometimes more often then others....remember...treasure yesterday, dream of tomorrow, live for today. 

A Gift of Love

With the help of Beth and Regali Jewelry, Ian gave Becca a Silver Fingerprint charm. The charm was made from the clay where Ian pressed his thumb. Ian decided on the other side of the charm to put B + I. In addition, a small stone can go on it and Ian decided on a crystal for their birthstone. Beth came for one of her visits on Friday, charm in hand and Ian could not wait to give it to his sister. The smiles on their faces were priceless, Becca knew right away that it was his thumb print. Off came her necklace for the charm to be added to she will always have him with her...right around her neck.

Friday, November 21, 2014

As Thanksgiving Approaches

Thanksgiving! Some may have thoughts of leaves that have changed color and are falling from trees. Some many think of visiting with family and friends, and watching the Macy's Thanksgiving Day Parade either in person or on TV.  And don't forget the traditional football games on television. We can't forget the memories of turkey dinners or whatever your family eats. 

According to Edward F. Gibbson, Jr., Thanksgiving Day is more than a day of fond memories, parades, football, and special dinners. It is also a day of thanks. On Thanksgiving Day, we are reminded of the bounty of treasures that is a part of our lives. It is important to remember that the word thanksgiving is composed of two words: thanks and giving. It should have a broader significance, we should remember to give thanks and to share and give. The holiday reminds us to share our economic and material wealth, and to share also our time and talents with other people who could use our help. In terms of thought and deed, the holiday of Thanksgiving gives us an enriched perspective on the abundance in our lives. 

Happy Thanksgiving. Today is a day of family...a day to be thankful. For us it is just not one day, we are thankful everyday. Thankful for all the time we have together, family game nights, family movie nights, Wednesday night family dinners, the laughs, the cries and the smiles. Thankful for all our family and friends who have been there with us since the beginning of our journey...checking in to see how we are all doing and what we need. Thankful for all our nurses, yes even though we get frustrated with them sometimes. Thankful for our Gilchrist team who has helped us to get where we are in our journey and will continue to help us through the next phases of our journey, which we know will not be easy. Thankful for all the teachers and staff at Chatsworth Elementary School and Franklin Middle School who have taught our kids and have helped them as we go through this. We are thankful for all of the doctors and all the people in the medical field we have met along the way and their continued efforts to help us find a diagnosis for Ian as well as guiding us along the way. Thankful for all of the people who have shared our story helping us to educate others. We are thankful for all the different organizations who have reached out to us along our journey and made our lives more joyous. We are thankful for our village.

We know our journey is not over...and perhaps the hardest is yet to come. We are thankful for everyday we are together knowing that in time it will change. Ian is holding his own but trying to figure things out, asking questions about Heaven (Do they have TV's and popcorn there?; Can he take his fan with him and how will it get there?) He has expressed that when he gets sick again he is not sure he wants to go to the hospital to get better, that he is OK going to Heaven. He is testing the waters to see how we will respond. Ian has been letting us know how we should continue to treat each other as life goes on. We know he doesn't realize what he is doing and we are grateful for that. He continues to have school thru home and hospital as well as many visitors through Gilchrist, Chai Lifeline, as well as friends. Enjoying things as he can, yet napping more often. 

Don't just take today to be grateful for the things in your grateful for them everyday. As stated above, remeber the bounty of treasures that is a part of our lives. It is important to remember that the word thanksgiving is composed of two words: thanks and giving. It should have a broader significance, we should remember to give thanks and to share and give. 

We are grateful for all who have been a part of our journey and our village and know we will continue to be grateful for you all as our journey continues. Happy Thanksgiving... Treasure, Dream, Live

Tuesday, November 18, 2014

Camp Shirt Day

While I can't wear both, they both hold a special place in our hearts. Camp Simcha Special and Camp Louise have given each one of our children a place to be normal, to forget, even for a few weeks...if that is possible.

Camp Simcha Special, is a place where Ian and other children and teens with a range of chronic illnesses can go for two weeks of fun, friendship, and where anything is possible. There are non-stop activities, bunk spirit, singing and dancing; for these kids...if there is a way, it is done. From baseball to photography and videography, arts and crafts to boating, swimming to rockety, talent shows to Color War, each camper gets to experience things they have done before and enjoy new things. After all, isn't that what camp is about...sure is! Well at Camp Simcha Special each of those activities is developed in an environment created with these children in mind. Each camper has his own trained counselor... we love you Danny, a guide and special friend who makes sure every minute of camp life is wonderful. It's not a place where illness means you can't but you can, everything is fun. With all of that in mind, they have a wonderful medical and administrative staff who are experts in caring for children with chronic illnesses. Due to the staff, there are children dependent on wheelchairs or walkers, respirators, gastric tubes and other medical equipment. Ian can do anything there, nothing gets in his way..he is "normal", just one of the boys.

Camp Louise, is a place where Becca can go to be normal, forget about life at home. There are non-stop activities, arts and crafts, photography, videography, outdoor adventure, athletics, dance and drama, a radio station and music studio, and swimming. Each bunk has about 12 campers with 2 or more college-aged counselors...Becca's counselors last year were wonderful. With Becca being a 1st time camper as well as our "normal" they made sure she felt safe, had a place to talk if she wanted to be able to share about her family or not share about her family. It was all about her....whatever she needed. Camp Louise took us under their wings and helped all us give Becca three weeks of fun, life-long friendships and it being about her, being "normal" and just one of the girls. 

For Brian and I, there are no words for what these two wonderful camps have done for our family. We know there is a place where they are "home". We know they are cared for with so much love. We know they are just one of the lucky ones...just one of the boys...just one of the girls.

Thursday, November 13, 2014

One Like No Other

She goes through things others don't. She goes through things a child should not have to go through. She watches her sibling go through things unimaginable, a twin sibling on top of it. She has had conversations as if she was an adult...she is only 11 1/2 years old. For the most part she manages very well....this year she moved from her comfort zone of Chatsworth Elementary School to Franklin Middle School. We all know the transition to middle school is a hard one and can be challenging from friends to course work to grades. She has handled her ups and downs and anxiety all well and pushed through things. 

First quarter report cards came home today and we could not be prouder....she made HONOR ROLL - 3 A's and 5 B's the lowest being an 85%.


Friday, November 7, 2014


Many times over the years we have heard you are an inspiration, you are a hero. I don't feel like one...especially on a night like last night. Today was a rough day for Ian, he spent most of the day in pain. He got the it all  from his regular pain meds to his PRN pain meds, including the oxycodone. By the time the nurse was ready to leave he was doing well. At least until bedtime, however that is usually when most of his discomfort comes into play, unless it was a day like yesterday as we have noticed, the weather plays a major factor in his comfort and pain.

One definition of inspire it to arouse (a thought or feeling) in (someone), inspiration is an inspiring or being inspired mentally or emotionally. A hero is a man of great courage, nobility, etc. or one admired for his exploits.
I don't feel like those things...for me/us we are taking care of our family, raising our children. But we have to do things that most parents don't have to do in caring for their children. I would like to think that if you needed to you would do it as well. Last night was one of those difficult emotional ones. You could tell that Ian was extremely tired which made it more difficult to understand him but he managed to get out what he needed to. It is usually bedtime when Ian decides to share the emotional things...he gets that honestly...right Brian. He said he was sad, sometimes he knows why and other times he does not. He did not know why he was sad but had some questions about Heaven. He asked how someone gets to Heaven. Well I have to say that is one question I had not gone thru in my head to have to answer and I don't remember what I told him. I preceded to tell him that when he is ready to go to Heaven it is okay to go and we will be okay down here. Just like a true pre-teen, he wanted to know if they have TV and popcorn in Heaven, my response...they have anything and everything there. I got a little smile from him then and he told me that I didn't have to worry he would be fine in Heaven. He continued with a few other things about Heaven, all the while I am starting to cry. Ian looks at me and says don't's okay. I asked him if sometimes he felt torn between here and heaven and he said yes (I had never thought of asking him this until I had a conversation with a friend who has lost her son), so I cried a little bit more. He again told me not to cry that we would all be okay. He is so much wiser then his 11 ways he should never have to be. I told him that we loved him with all of our hearts...and he ran down the list of making sure all of us in the house really do...Daddy he asked, yes I said, Becca he asked, yes I said, Joey (that's our dog) he asked, yes I said, and you he asked, yes I said. Finally we got him to stop talking and realized that he was beyond tired and needed to try to go to sleep. Once the nurse got to the house and took over for Ian, I lost me I am not a hero or an inspiration...I am taking care of my ways I never imagined. Watching him grow weaker and incure more pain as days go on but at the same time watching him grow into a wonderful person who is wise beyond his years. Watching him play games with people, play tricks on people, watching him try to scare people...all the things an 11 year old does....we are watching our children us they are the inspiration and the heroes.

Monday, November 3, 2014

"613 & Me", Paint Ball and "New Normal"

Sunday morning we went to our "613 & me" program for the kids B'nei Mitzvahs. They got to do a little bit of service, while meeting local organizations they could do service for. One of the cool parts about this is they get to share in this experience with each other but also with their cousin Devin who will have is Bar Mitzvah 6 months before the twins. Now it will be time to figure out what they kids want to do....the little bit of talking we have done, Becca wants to do something for Make a Wish or Give Kids the World, while Ian wants to do something for Camp Simcha Special.

Ian was given the opportunity to fire a paintball gun from our back deck into the backyard as some brave Chai Lifeline volunteers. And yes they were moving targets. Last night one of the guys from Chai Lifeline came over for Ian to do something you would never think he would be able to do but just knew he would love to do...shoot paint balls...yup. They brought the guns, the paint pellets, some protective gear and 3 of them were the moving targets. We went out onto our back porch while they ran around the back yard and them in the head, in the back, in the butt, on the leg....Tzvi was smart and has gotten to know our family over the years..he did not tell me what was going on until 20 minutes before hand for fear I would say "NO". Wise move Tzvi. 

On a different note...the past few times we have been out of the house with Ian, he has required oxygen. His oxygen levels have not dropped but his breathing has become labored. We think that this maybe his new normal. The HME (in line humidification system we use when out of the house) is just not doing it for him without the oxygen anymore. In addition, at least 10 of the past 14 nights we have had to give Ian his PRN pain medicine (motrin). He has not been able to get comfortable which is requiring a lot of re-positioning. After talking with Erin ( his Gilchrist nurse), and her reporting to his team at their weekly meeting this morning we are going to be working on changing his pain management. We will be increasing his methadone to 2.5ml, while this is not a huge jump we are hoping it will help him. In addition. Dr. Hutton does not want him to use the mortin as the PRN pain medicine any more as it is a non-steroidal which can take a toll on his body. So we will be starting him on oxycodone as his first line of PRN pain meds.

This has hit us a little hard, as we knew it would happen and we know Ian's comfort and quality are what is most important but as with any "new normal" just is....our "normal".

Friday, October 31, 2014

Happy Halloween

For those who really know will love this card as much as he did....he laughed and loved it....thank you Nurse Erin for making him laugh and taking wonderful care of our family and Ian. 

The kids had a great time trick or treating. 

Thursday, October 30, 2014

Siblings of Kids with Chronic Illneses

Earlier this week I had the opportunity to speak to a group of social workers at Johns Hopkins on siblings of kids with chronic illnesses. A chronic Illness is a life-changing event, not just for the sick child but for the entire family. The chronic illness poses a number of challenges to the whole family. In many cases the illness itself becomes the main factor of the family life...even if you try for it not to. It becomes the most popular topic of conversation (we have people call our home, "how's Ian" and that is the topic and the entire conversation...yes Becca picks up on this), the most important thing on the schedule and the major expense. This often leads to schedule changes, routine changes and sometimes just disturbing the overall sense of normalcy for the family (whatever that normalcy is). Helping the healthy child understand this is difficult...factors such as the chronic illness and age of the healthy child come into play.

Siblings face challenges associated with chronic illness of a child within their family. They often "find their lives are constantly interrupted by medical emergencies that trump well kid cares. -Leah Vanderwerp College of Arts and Science We have seen this happen with Becca quite a few times, even though we do our best for it not to happen. When we know of an event on Becca's schedule and things are going on with Ian we have turned to many to get her to that event and to try to keep her life as "normal" as possible. Some of these challenges include the shift in parental attention toward the sick child, the complication of the sibling relationship and rivalry, and potentially even a period of separation from one or both parents and the sick sibling. -Leah Vanderwerp College of Arts and Science Over the years and throughout Ian's numerous hospitalizations, we have developed a way of making sure that every night one of us sleeps at the hospital and the other one sleeps at home with Becca, getting her ready for her next day and to where ever she needs to be. Through advancement in technology the kids skype every night when Ian is in the hospital so they can check in on each other, making sure to give each other kisses good night and telling each other to sleep well.

As a result of these household changes, siblings may face a relationship based more on caregiving than mutual companionship. In the wake of a parent or sibling's absence, other children are often forced to step up and fill the vacated household roles. -Leah Vanderwerp College of Arts and Science The above are things that Brian and I have tried very hard to not do. We try to remember that Becca is still a child and it is not her responsibility to care for Ian. There are times we will ask for help and do remind her that caring for each other is part of being a family, however, due to our unique situation we try to remember that she is the sister, the twin sister for that matter. She does have chores that are age appropriate, and will get punished for not doing them or for having the typical "pre-teen" attitude. 

The healthy child may have feelings of guilt, become annoyed with the ill child because of all the attention they are getting...yes Becca does get annoyed because of this. They have to learn to speak frankly about tough issues at a young age like having a conversation with your 11 year old (both of them) about dying. Talking with Becca about what would happen if we did not trache Ian when we did, having a conversation with her regarding her brothers funeral and letting her know that we have planned it so when the time comes we can take care of each other and not have to worry about that part of it. Having a conversation with Ian, about heaven and letting him know that all of his body parts that no longer work are waiting for him along with other family members who have already passed on are there to meet him. Watching Becca earn her first aide badge with Girl Scouts...they had an ambulance come to work with the girls...watching her look at all the equipment and saying, "there's a suction machine, there's an ambu bag, there's an oxygen tank...etc" Very heartbreaking to hear your then 9 year old know what all of those pieces of equipment are plus how they work. 

Trying to establish some balance between the needs of your ill child and those of your other children is difficult. Some things we have done to do this are to make sure we have one on one time with both kids...we have told Becca if she feels she needs mommy or daddy time then she needs to tell us. We have been open and honest with her as best as we can at her level regarding Ian...after all she lives it in a different way then Brian and I do. She deserves to have her questions listened to and answered.

Some of the things I shared with the social workers are making sure to remind the family that they have other children besides the sick one and those children are going to need them as well. Reminding them that the parents need to take care of themselves as if taking care of parents is as important as taking care of the child because the parents need to be healthy (emotionally, physically, spiritually) in order to help the kids. No we don't practice all of would be nice. Helping the family to get resources in the community not for just when the ill child is in the hospital. For us, we are always in crisis mode and believe it or not, we have crisis mode of when Ian is in the hospital down to a science. It is the crisis mode of him being home that is harder to manage sometimes. The resources are not always least for us given his rare disease. We do have many resources in place and those we have in place are wonderful but there are definite times when more is needed.

I found this in When Jack Fell Down...Jill Came Tumbling After: Siblings in the Web of Illness and Disability

* Assess the family system, determining from healthy children their responses to the complex medical problems of their sisters and brothers. Identify from the assessment sources of strength and stress. Ask parents about the family constellation, support systems, and child care arrangements. Engage parents and children in a discussion about roles, responsibilities, and relationships of all family members. Explore with them family strengths and needs. Determine how children have been informed about the medical situation of their sibling and elicit parental perceptions of how well they have adjusted to it.
* Identify available resources within the family, school, and community.
* Craft the resources into a network that involves but is not limited to a mobilization of social supports. The use of on-line discussion lists and focused chat rooms has become a powerful means of sustenance for parents and children, both of whom gain access though this communication medium to age-mates dealing with similar issues. Parents may need help in understanding the concerns of their healthy children; therefore, nursing strategies should be designed to enhance parental coping as well as sibling support.
* Collaborate with other health professionals to maximize the use of concrete resources. Social workers might provide parents and children with vouchers for public transportation or with access to useful service agencies. Heed the advice of children who have "been in the web."

The following "shoulds," suggested by siblings, have been demonstrated to be effective supports (Itzkowitz, 1991). Siblings should:
1. Be treated as children, not as supplementary adult caretakers.
2. Not assume responsibilities beyond their preparation or maturity.
3. Be encouraged to express their feelings openly.
4. Have their questions answered in an age-appropriate manner.
5. Be involved in discussions and decisions involving family matters, particularly those that personally affect them.
6. Feel that their reactions and opinions are valued.
(Fleitas, 1998).

Lessons have been learned...this was also found in When Jack Fell Down...Jill Came Tumbling After: Siblings in the Web of Illness and Disability. Some of these things Becca has verbalized in different ways and I hope as time goes on she will continue to verbalize them and see more.

One teen pondered her life as the sister of a child with a progressively fatal neurologic disease, and conveyed a number of positive themes in her message. "Living and loving...has taught me so many things. I've learned how to be patient, understanding, and caring. How to love fully. I've learned to take time for the little things in life, like looking at the trees and watching the leaves blow." She continued, "To my amazement, I love the life I have because of him...I would never trade it in for anything else! I learned that when in life we're faced with challenges, we should deal with them the best way we can, we should take time out for ourselves, and we should never give up!"

The path to maturity is slippery, yet this teen travels it with certainty. She attributes her values to the lessons she's learned from her brother. "...the other day, perfect example, this girl in my class is complaining that nothing ever works out right for her. She whines because she has bad hair days one after another. And I'm like, 'Hello, get a life,' my brother is so brave with his trache and his wheelchair; he teaches me that what's important is kindness and courage and laughter. Never thought I'd get to a point where I'd say laughter, but I think that's how we all survive in my family."

I did not plan my talk, I just got up there and shared our journey and started speaking....I hope they gained as much as I did.

Wednesday, October 29, 2014

Making Memories

Since Ian has not been going to school anymore and a teacher is coming to the house we have been able to go out a little bit more. It seems he has a little bit more energy on the weekends. so we try to venture out. A few weekends ago, Toys R Us had a free Lego building Batman lite. It really was little but we did not know what to expect, it didn't matter because the kids had a great time. And they each got to pick out something new from you know they really had a good time. 

That same weekend we went glassblowing. It was amazing and something we got to do together.  Brian and Ian each made a paperweight. Becca made a flower.  I made a ring holder. And together we made a vase. Learning something new and watching how everything is done along with watching the professionals make other things was amazing. These are treasures we will always have.