Sunday, July 31, 2016


I just finished reading the book House Arrest. This book has many similarities, yet many differences to our lives. It is about a middle schooler who ends up on house arrest for stealing a wallet in order to try to help his family. His baby brother has a trach and nursing needs, yet due to certain circumstances, they can't get everything he needs. Timothy, the middle schooler, must write in a journal regarding his feelings and what he has learned being on house arrest while reflecting on why he stole the wallet. Some of the feelings and emotions he comes across, such as feeling like he was on house arrest before the court ordered house arrest because of his brother, or the feelings of needing to try to find a way to fix his brother. I started to wonder if these are some of the feelings that Becca may be having. For many reasons, we don't go out as a family very often. When she has activities, most of the time we find others to take her, as someone needs to be with Ian at all times, how does that make her feel, does she really understand why we aren't the ones to take her? How will all of this affect her when she gets older? My hope is that she really gets it and our family situation will help mold her into a wonderful person, a caring person, one who helps others regardless of the situation. My hope is that as time goes on she does not resent any of this and it helps to mold her. My hope is that she comes to terms with it all and has others to share her feelings not feel like she is on HOUSE ARREST.

Friday, July 29, 2016

Happy Places

As of Monday morning at 8am, Becca had arrived at her happy place.  So far I have seen a few pictures, all with a smile on her face. Otherwise, no news is good news!
As of 11am, Thursday morning, Ian arrived at his happy place. Me being me I have checked in and am happy to report he's doing well, as is Dovid, his new counselor. Below is the painting which was made for his room, simply amazing. 
Here's to the kids having an amazing time at Camp Loiuse and Camp Simcha Special!

Tuesday, July 19, 2016


The end of June and into July, Becca got to go on a wonderful vacation to Alaska with her Nana and Poppop and her cousins. Below is a photo of the dog sledding. They got to do some once in a life time things as well.  Ian asked for a vacation since Becca was getting one, well how does Ian get a vacation, he goes to the Gilchrist hotel. So today he was dropped off for his vacation. Below you can see him tucked in and watching a movie. By each of them getting their own vacations, they are both also getting some mommy and daddy time. Treasure, Dream, Live!

Wednesday, July 13, 2016

Pulmonary Appointment

Every 6 months Ian gets checked out by his pulmonary doctor. You never know what will happen, although sometimes I have my feelings about it. Today was a fantastic appointment. Dr. S was extremely happy with Ian and what she saw. His CO2 level was 44 (normal is 35-45). His O2 was 100. Very stable on the HME. He has been off of antibiotics for about 5 months and doing well. Dr. S made no changes to Ian's treatment plan or his vent settings. And best of all,


Smiles all around after the appointment. We go back in 6 months.

Tuesday, July 12, 2016

Migraine vs Pain

I am a frequent headache/migraine suffer, and last night was just another one of those times. As I laid in bed trying to fall asleep, my mind wandered through the pain. It came on and off, sometimes slight pain others horrible. All I wanted was for it to go away...for sleep to come over me. It got me to think about Ian and his pain. How much pain is he in regularly? How does he deal with it? My heart hurt when I thought about it...I felt like my pain was nothing compared to what he goes through on a daily basis.

According to 
A migraine can cause severe throbbing pain or a pulsing sensation, usually on just one side of the head. It's often accompanied by nausea, vomiting, and extreme sensitivity to light and sound. Migraine attacks can cause significant pain for hours to days and can be so severe that the pain is disabling.

According to
Pain in its most benign form warns us that something isn't quite right, that we should take medicine or see a doctor. At its worst, however, pain robs us of our productivity, our well-being, and, for many of us suffering from extended illness, our very lives. Pain is a complex perception that differs enormously among individual patients, even those who appear to have identical injuries or illnesses.

One of the biggest struggles for us with Ian at times is pain management. When I get a headache/migraine, I know my medicine and sleep will help it to feel better and eventually go away. For Ian, depending on the day, depends on what helps him to feel better, I don't think the pain ever goes away. I believe he has always and always will be in some kind of pain. Sometimes it is as easy as giving him one dose of pain medicine while other times it takes multiple doses of multiple pain medicines. And getting him to take a nap, well that is another challenge, unless its medicine induced. 

I am not sure where or why I am writing this except for the realization that the next time I have a headache/migraine, I will try to remember my pain is minimal compared to what my little man goes through on a daily basis. I will also try to remember the next time Ian's in pain, his pain threshold is probably relatively high and work through it with him. 

Tuesday, July 5, 2016

Bereaved Parents Awareness Month

I don't think you have to have lost your child in order to be a bereaved parent. I think if you are dealing with a chronic terminal illness, it comes in stages go through periods of being okay and then periods of bereavement. It can be over a small thing such as looking back over this blog, seeing how Ian was as an infant, toddler, young child and where were are now. Well I guess that is not such a small thing...even though we try to make the best of every situation and look for the positive in everything, that does not mean we are always able to do so. We have been dealing with Ian's chronic terminal illness for so long that we have already been through different stages of grief (and they come and go over time)...waiting for the other shoe to drop...waiting for the next illness and the unknown and will that one be the ONE. I guess what I am trying to say is that even though we don't fit into the true definition of bereaved parents, we already bereaved parents.

from the TODAY website

What do you say to a mom or dad who has suffered the ultimate heartbreak?

July is BEREAVED PARENTS AWARENESS MONTH, a project started by Peter and Deb Kulkkula in honor of families trying to cope after the death of a child. The Massachusetts couple struggled through the deaths of their two adults sons. 

As a mental health professional and twice-bereaved parent, Dr. Gordon Livingston knows the issue all too well. The Columbia, Maryland, psychiatrist lost his 23-year old son Andrew to suicide in the early '90s. Just over a year later, his 6-year old son Lucas died from leukemia.

Livingston watched as friends and acquaintances struggled to address him. When faced with such deep sorrow, people will often blurt out well-meaning but awkward, insensitive phrases like "He's in a better place," "Everything happens for a reason," or "You're lucky to have other children," he said.

"No one knows how to react. There's nothing they can do so they come up with these meaningless platitudes....that are either dishonest or carry with them no consolation whatever," Livingston told TODAY Parents.

Livingston and Deb Kulkkula suggested these four things to say or do for a grieving parent:

1. "Do you want to talk?"
Don't shy away and don't keep your distance.

"What works is your presence. There's no set of words that will work each time, but being there for someone in a supportive way is what provides the most consolation," Livingston said.

Bereaved parents need to be able to talk, so look for ways to open up the conversation and give the mom or dad a chance to speak, Kulkkula said. Check on them regularly so that if they want to talk, they can.

2. "I remember the time when..."
Don't avoid mentioning the child who has passed away, Livingston said. In fact, the silence of people not mentioning her late son's name can be "deafening," a St. Louis mom wrote in a powerful essay for Bereaved Parents of the USA. Like many parents who have lost a child, she craved hearing his name and stories about him.

Kulkkula and her husband loved it when people shared anecdotes about their late son.

"With most people, it's their own discomfort that stops them from talking about it with family. So unless a parent tells you, 'I can't talk about him or her now,' please talk about their children," she said.

3. "I gave to his memorial fund."
Bereaved parents are often afraid their children will be forgotten, Livingston said. One of his friends set up a memorial fund for Lucas and each year on the anniversary of the boy's death, there's a contribution.

"That sense of continuing and remembrance goes a long way," he noted.

Kulkkula found it comforting when her church started a scholarship fund in memory of her late son.  

4. "I mowed the lawn"
An open-ended offer--such as "I'll do anything, just let me know"--likely won't work because the bereaved person won't want to ask for help. Kulkkula said, or might not even know what they need. Rather, make it more specific, such as "I'm bringing you a meal tonight, I'll be there at 6 o'clock."

Livingston is still appreciative that after his youngest son died, somebody just showed up and mowed his lawn.

And the one phrase never to say: "I know how you feel."
This in the No. 1 phrase to avoid when consoling a grieving mom or dad.

"It's not permitted to say that to a bereaved parent unless you are a bereaved parent," Livingston said. "It betrays such a lack of understanding of what the bereaved parent is going through."

People are sometimes tempted to list their own periods of grief--the death of their grandmother or a beloved family pet--as a way to sympathize, but those are not equivalent losses, he noted.

"To try to explain to people that this is the kind of loss that transforms you into a different person, that you will never be the same person you were before this happened, is almost impossible.: