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Monday, May 30, 2016

All the what if's

This weekend I have the pleasure of attending a dear friends daughters Bat Mitzvah. I was sitting in the back of the sanctuary during the service, so were all the kids. Seeing the 12/13 year old boys...got me thinking. What would Ian be like if there was no VRK1? What would his voice sound like? How tall would he be? Who would his friends be?  How mischievous would be? So many what if's...

Some days, the what if's don't even enter my mind. Ian is Ian and I am grateful for him and all he has become. He has taught us so much over his 13 years, and I know he will continue to teach us with whatever time he has left.  I have realized to not worry about the things which we have no control of but to focus on what we do have control of and make a difference with those things. I, usually, don't take things or people for granted. We have tried to teach Becca the same, although I don't think she is there yet, I have faith that as she continues to grow she will get there.

Some days the what if's are all over the place and in my face. There is no way to make them go away, and my mind just wonders and wonders. From reading Facebook post or other blogs of other parents who have already lost their beloved children, I know they will always be there. Once he is gone, I'm sure as each milestone comes the what if's will as well.

Sitting in the back of the sanctuary on Shabbat, the what if's entered my mind for a period of time...but before I knew it they were gone and I was thankful for who my family is.

Always remember to treasure, dream and live!

Friday, May 27, 2016

Uncharted Waters

Over the last 2 plus years, we have been very lucky...Ian has remained healthy. We last week that changed. We traveled into uncharted waters, caring for him at home, no hospital visit. It got rough for a little bit...my last post from Thursday, May 19th stated that Pain Stinks...well looking back that was the beginning of Ian being sick. Thursday night around 10:30, his nurse informed Brian and I that he was not maintaining his oxygen levels and she was going to put him on oxygen. At 11:30, she came to get us to let us know he had a temp of 102.5. Ugh, this was not good, Ian does not usually run temps so this one really through us for a loop. We gave him some medicine, tucked him back into bed and told him to close his eyes that sleep would help him to feel better. 

Well Friday (May 20), I decided to stay home as I was not comfortable leaving him, scared to leave him.  A great decision on my part....he woke up saying he did not feel well...his temp was down to 99.5 (this was actually the highest it got to be all day). As the day progressed, so did Ian's respiratory distress. While he was getting his regular morning breathing treatments, he was not able to maintain his oxygen levels...so an increase in oxygen was needed. In addition, there was an increase in his secretions, they were thicker and starting to get discolored. We needed to play with the oxygen and continued to suction for a few hours until we could get him stable. His home respiratory therapists and hospice nurse were due to come for their visits on Friday...so that helped with deciding on a plan. Since not going to the hospital is in the plan, we needed to figure out how we were going to treat him without knowing what was really going on. From listening to him, we knew he had decreased breath sounds in his left lung. So the plan was to increase his respiratory treatments from 3 times a day to every 2 hours round the clock.   This includes a nebulizer treatment, cough assist, and suctioning. We had some bactrim (antibiotic) in the home, so we started him on that. In addition, we could increase his ativan and oxycodone if needed. We know that would make him sleepy but we also know that sleeping when you are sick in a good thing. 

Saturday (May 21) was an okay day, he had one episode in the morning which took me about 45 minutes to stabilize him. We continued to do his treatments every 2 hours and he slept on and off while watching TV. Around 6pm, he told me he needed all his respiratory treatments, which includes, nebulizer treatment, chest vest, cough assist, and suctioning. While doing this his first huge plug made an appearance. I did another treatment at 8pm and out came another plug...this was all good, better out then in we say. He was not running a temperature anymore and his breathing seemed to be a little bit better. As this point, I was hoping we were crossing over to the getting better side of things...only time would tell.

Saturday night was a good one for him, he slept through the night and all of his treatments. It was a quiet night for him.

Sunday (May 22) was not so great. We got lots of plugs out and he was on oxygen most of the day. In addition, he slept most of the day. He was on 1.5 liters of oxygen through out the night and his secretions continued to be thick. 

Monday (May 23) was a better day. his secretions were starting to thin out. We were still doing his treatments every 2 hours. Around 4pm, we were able to get him off of oxygen and back on room air. In addition, we started to do his treatments every 4 hours. We were making a turn in the right direction. He took a good morning and afternoon nap but was awake for his regular visitors. 

Tuesday (May 24)....he took a good morning and afternoon nap, and awake for his regular visitors. He continues to be off of oxygen, holding his oxygen levels around 98 as well as his heart rate has come back down to a comfortable level. After a conversation with his hospice nurse, we are back to doing his respiratory treatments 3 times a day. We will continue the bactrim for a full 7 days, so he will finish on Friday. 

Wednesday (May 25), is just another day. He was engaged with his teacher, ate pretty good and continued to get back to himself. 

As for Brian, Becca and I, we survived the uncharted waters....it was just the 1st time but we know it won't be the last. For those that knew, Ian was sick, thank you for all of your help as well as your text messages and phone calls checking in. We could not have done it without you. 
Thursday, May 26th...looking good after a rough week!


Thursday, May 19, 2016

Pain Stinks

Today was a rough day! Ian had lots of foot pain as well as a very hard time getting comfortable. I was home with a covering nurse so was hands on trying to get him comfortable. After many times repositioning him, 3 doses of his break through pain medicine as well as a dose of adivan...he slept for close to 3 1/2 hours. He's woke up around 8:30 and still seems to be in some pain but it does not seem as bad as earlier today.

Watching your child in pain and not being able to do much about it is hard...beyond hard. Knowing one of the only things you can do is drug him up so he falls asleep does not make you feel that great...but it is what we have to do.

Hoping for a painless night for him as well as for tomorrow.

Tuesday, May 10, 2016

B'Nai Mitzvah - May 8, 2016

Where to start on what a week it was...it was finally here after having a date for 3 years. Six to eight months of planning and practicing...it was here. As I type this, two days after, we are still on a high from all the emotions and holding onto the memories, which we will have for a lifetime. 

On April 22, 2016, Becca and Ian turned 13. A milestone for us as well as in the Jewish religion. 
Morning of April 22, 2016


Caddie even needed to get in on the festivities of the day.

According to Jewish law, when Jewish boys become 13 years old, they become accountable for their actions and become a bar mitzvah. A girl becomes a bat mitzvah at the age of 12 according to Orthodox and Conservative Jews, and at the age of 13 according to Reform Jews. Prior to reaching bar/bat mitzvah age, the child's parents hold the responsibility for educating their children, but not directly for their actions. After this age, the boys and girls bear their own responsibility for Jewish ritual law, tradition, and ethics, and are able to participate in all areas of Jewish community life. In addition to being considered accountable for their actions from a religious perspective, b'nai mitzvah may be counted towards a minyan (prayer quorum) and may lead prayer and other religious services in the family and the community. ( https://en.wikipedia.org/). 

We didn't do much on their actually birthday knowing that we had the big day coming up...in addition to their birthday, April 22nd was the beginning of Passover. The big week started off on Wednesday, May 4th for Becca and I...the manicures and pedicures were a must. We had a great time spending time together...Becca decided that she wanted her nails orange...and who was I to stop her...after all it was her day. 

Thursday, May 5th was time for pictures with the grandparents. As you may remember, a few months back we did some formal pictures just the 4 of us to have...just in case things changed before the big day. 





Since we had these photos we did not do many with us or individuals of the kids taken then. We left this day to the grandparents. The morning started off with Ian being in some pain so we gave him pain medicine along with his anxiety medicine (we always give him this when leaving the house), however, the combination of the two he has never gotten. We knew he could handle them alone but did not think about what the two would do together...well we learned a lesson...they knock him out. Ian slept through the photos with his sister and grandparents. We tried to wake him up many different ways and many different times but waking up he was not doing. What was important is that he was there for the photos regardless of being asleep. After photos, it was lunch time...all the grandparents came back to the house for some lunch, a little bit of bonding before everyone went home to rest up for the rest of the week/weekend. 

Friday, May 6th, started off as a very relaxing day. Brian and I took Becca out for breakfast before running some errands to get ready for Shabbat dinner. Afterwards, some naps were had before getting ready for dinner. It was a wonderful night with the grandparents, aunt and some cousins. 

Saturday, May 7th, during the day, was a normal Saturday for us. Becca went horseback riding. Ian got his bath (he usually has them on Sunday but this week switched it). Brian and I took care of the kids and tried to relax. Saturday, late afternoon, we had our friends who came in from a far, over to get in some quality time. After all, we knew we weren't going to get in any time on Sunday. Dinner, drinks and laughs were had. It was wonderful to be able to catch up with friends we have not seen in years.

Sunday, May 8th...the day was finally here. It started off early in our home...with hair and makeup at 7:30. The nurse, one of our favorites, arrived at 8:00. We wanted to be at shul by 9:15, to check on the reception set up and check in with the Rabbi before the service started at 10:00. We were pretty much on time with arriving at shul around 9:20 and before we knew it, guests started to arrive. The service was wonderful. Brian, Danny (Ian's counselor and friend) and both kids did a great job. Ian did a great job paying attention to what was going on as well as making everyone laugh when the Rabbi was speaking to him. At just the right times, he stuck out his tongue as well as his irresistible smile. Becca did an incredible job. She had a rough time right before it was her turn to read from the Torah. She became scared and her anxiety got the best of her, she pulled herself together like a champ, took her deep breaths, and read her Torah portion, without skipping a beat. Just look at that smile below.
 Both kids read their D'vah Torah's (I read for Ian) with such grace. Brian and I could not have been prouder of our children. 

After the service was over, the adults went into the Garden Lounge for a short cocktail hour while the kids went into the Krieger Auditorium to get started with the DJ and party. It took a little while for me to get out into the Garden Lounge...lots of people came up to wish us a Mazel Tov. The emotions which were going through me were beyond words. Just having both of my children here to become B'Nai Mitzvah...was a dream come true. As the day got closer, my goal...to keep everyone healthy and here. There were many special moments during the reception...the introduction (when Chai Lifeline did their tunnel for us to come through), the hora (seeing both kids lifted in the chair, yes you are reading that right...Ian was lifted up in his wheelchair), 


the candle lighting ceremony, Spider-Man, the father-daugher/mother-son dance, spending time with friends in the photo booth, and Brian's speech thanking everyone for all of their support over the years...just to name a few. 


As I sit here and finish this blog entry, I am still overjoyed with emotions looking at the photos friends have sent me along with just thinking of the day. I am not sure what I wanted from the day, but it was everything I could have wanted plus. Thank you to everyone who came out to celebrate with us...to share in our wonderful simcha...you are all a part of our village and support system and we love you all.


Sunday, April 17, 2016

Grateful for Insurance

On Friday, we had Ian's model waiver meeting. What is model waiver you ask, well it is one of the Medicaid programs, which is available to only 200 people is the state of Maryland. It is designed to avoid costly long term hospitalization of children with complex medical needs and disabilities by providing medically necessary supportive services in the home funded by Maryland Medicaid. The serve children with complex medical needs who are at risk of long term hospitalization/institutionalization without necessary services in the home and who are under the age of 22 at the time of the referral and are not eligible for any other Medicaid funded programs. 

Every 6 months we have to have a meeting to go over changes and coordinate his care for the next 6 months. These meetings can be tedious, even when they are about your child. Everyone who cares for Ian is at the meeting....his care coordinator (Medicaid case manager), pediatrician, home nursing agency, hospice agency, and a parent(s). We go over everything; all his doctors, when he saw them last, what was said and done and when he will see them again; all his medicines (and he is on quite a few), how often he gets them and his doses; all his equipment; all his medical supplies (a lot of those as well); his nursing needs and the hours he gets (what our private insurance does not cover Medicaid does); and his hospice needs. At the end of the meeting, the cost of services is gone over...if Ian was in a facility it would cost the state over $400,000 a year to care for him. By us keeping him home (would there be any other way), it cost the state just under $200,000 a year to care for him. I can't imagine what it would cost us without insurance....and today I am grateful for model waiver so we can spend our days with Ian home. 

Monday, April 4, 2016

Welcome to Holland (Part 2) by Anonymous

I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned. I reflect back on those years of past when I had first landed in Holland.

I remember clearly my shock, my fear, my anger -- the pain and uncertainty. In those first years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time.

I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends.

Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad.

I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?

Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too and look closer at things, with new appreciation for the remarkable beauty of Holland with its' tulips, windmills and Rembrandts.

I have come to love Holland and call it Home.

I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.

Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined!

Welcome to Holland by Emily Perl Kingsley

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." 

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." 

But there's been a chance in the flight plan. They've landed in Holland and there you much stay. 

The important things is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you much go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. 

It's just a different place. It's slower-paced thank Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around ....and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy....and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away....because the loss of that dream is a very very significant loss. 

But....if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things....about Holland.