Sunday, July 29, 2012

Petition to help get Ian's Bath Chair covered

One of Ian's friends parents started this to help get Ian's shower chair covered...thanks Tara Webb. Please sign and pass it along...the more signatures we have the better.

Marci, Brian, Becca and Ian...

Saturday, July 28, 2012

The power of social media....posting on Facebook "Looking for a way for Ian to ride a motorcycle....any ideas, suggestions, contacts...." many people posted giving suggestions on ideas....thank you all. The generosity of people still amazes me...Mindy, Louis and Dean; along with everyone else who came out to ride with us today...thank you for helping Ian ride a motorcycle....the pictures say it all...
Waving hi...look at we come.
Ian learning the rules from Mr. Louis about riding in the sidecar.

Getting Ian all strapped in and making sure he is secure.

 To the left, Ian has his helmet on and is getting ready to go.

Below, Brian has his helmet on and is getting ready to go as well along with all the others who came to join us for the ride.

Look at the wonderful views we had on the ride.

Not sure how anyone could actually fall asleep which on a motorcycle ride, but leave it to Ian to certainly figure it out.  Below, Brian looking back and signaling that Ian is asleep.
Taking a break for all the other riders to stretch their legs...

After a few minutes, it was time for all to get back on their helmets and bikes and hit the roads again....

All good things must come to an end....but wait....there was one more thing....

Becca and her friend Sydney had to go for their ride too...around the block....

A group shot to end a wonderful day.....thank you all. Putting Ian to bed this evening, I asked him what the best part of today was...he responded "riding the cycle".

Tuesday, July 24, 2012

A New Normal...Diagnosis

Imagine one day everything being normal...whatever your normal is. Then in some way in a blink of an eye your normal changes...what will be your new normal?  July 4th weekend of 2009 our normal changed....and has continued to change over the past 3 years...July 2, 2012 our normal has changed and we will again look for our new normal. Ian is NO longer undiagnosed.....

March 2012, Brian, Becca, Ian and I continued our journey with Dr. Raymond and Lelia (our new and wonderful genetic counselor)...we were the 13th family through Kennedy Krieger Institute to have a whole genome sequencing test through Ambry Genetics. This test is different from anything we have ever had done, actually different then most people have ever had done. To explain it very simply...if you are looking at an aerial view of a map whole genome sequencing looks at the street views...traditional genetic testing looks at the state view of the aerial map or only 1 to a few specific genes at a time. Whole genome sequencing can look at 80% of your protein genes...most disease causing mutations are found in the proteins genes.

Exactly 3 years after Ian started major disease progression ...July 2, 2012; we got the call; the results of the whole genome sequencing were back and showed a VRK1 mutation. Exactly what does this mean; for one we now know what is causing all of Ian’s regression. Another thing we know, Ian is the 3rd documented case in the world; in 2009, the same mutation Ian has was reported in 2 young girls from an Ashkenazi Jewish family; many of the same neurological difficulties Ian demonstrates these girls had. VRK1 appears to be important for the survival of motor neurons (responsible for movement) and for the development and maintenance of a structure in the brain called the cerebellum. Spinal Muscular Atrophy [SMA] with Pontocerebellar Hypoplasia [PCH] Is Caused by a Mutation in the VRK1 this time due to the rarity of VRK1; its role in processing and transmitting information by electrical and chemical signaling is very limited.  

To be clear; Ian does not have SMA or PCH, yet, he does have characteristics of both. Without the clinical diagnostic exome test, we would still be undiagnosed...according to Dr. would have had to be a genius to figure this out. The plan is for Ian to be treated as if he has SMA2...we actually have been doing all of what this entails except for one thing, we are waiting for MD appointments for our normal to continue changing.

As we adjust to our new normal....remember, Ian is imperfectly perfect. He is affectionate, brave, charming, compassionate, considerate, courageous, curious, dependable, determined, frustrated, funny, gentle, giving, imaginative, intelligent, lonely, loving, lucky, mischievous, picky, polite, quiet, rambunctious, respectful, scared, sensitive, silly, sincere, smart, sweet, talkative, terrified, thankful, warm-hearted, and wise. Brian and I resolved early on that we would not allow Ian — our beautiful, imperfectly perfect child — to be “just” a statistic. We want his life to have meaning and make a positive difference in this world. We will do whatever it takes to give him everything and anything he needs and deserves, just like we do for Becca.

As it has been said “Man plans, G-d laughs.” As I write this, a person, not a statistic, I know that, this time, G-d gave me the gift—along with Brian and Becca and all those who are a part of our village - the gift of laughing with Him.”

Saturday, July 21, 2012

Camp Oest 7/11 - 7/14 2012

Well it has been a week now since Ian and I went to cub scout camp called Camp Oest.  Oest, is the BSA Nationally accredited resident Cub Scout summer camp of the Baltimore Area Council, Boy Scouts of America.  As opposed to Day Camps, Camp Oest is a complete outdoor program, activities that included Nature, Shooting Sports (Archery and BB Shooting), Handi Craft, Boating and Pool. 

Ian had a great time experiencing everything they had to offer at Camp Oest.  The staff there was amazing and assisted in anything and everything Ian needed help with.  I can't begin to explain how much fun we had there together and sharing this experience with him was incredible as well. 

Here are some pictures of our activities during the four day session.

The staff set us up with a room in the Admin Building.  Mainly because of needing the electric outlets for Ian's cough assist and chest PT vest.  They even put up a little sign on the door that clearly stated Ian's Quarters.

First evening welcoming camp fire.  This thing was HUGE as you can see.

 I think these two pictures were Ian's most favorite activities of all during Camp Oest.  The picture to the left shows two staff members assisting Ian in his archery activity.  Whereas, the picture below and to the right shows Ian preparing himself to do some BB shooting. 

So many different activities, so many pictures and so much to say about the entire experience that I could just go on and on with pictures and captions.  Besides the ones above, Ian and I went boating with our pack one day.  There we played a game of capture the flag which turned in to more of the game of splash as much as possible.  After we got back to the dock and out of the boat, Ian looked at me and said, "Daddy you were smart for taking your shirt off."  Because we got drenched.  He also helped the pack light a camp fire by using a long stick with some twine wrapped on the end that one of the staff members made for him so he could be involved.  

Again, I can't say enough about the whole experience...from the staff at Oest, to the other members of Pack 143.....this experience with Ian....will last forever and a day.

Saturday, July 7, 2012


Ian just had to have this blanket when we were at Toys r Us this afternoon. And why would Brian and I say no...we know he is going to use it all the time. It already has been told it is going to Camp Oest with the boys next week.

Monday, July 2, 2012

January 8, 2012

Weekend was a hit...Ian spent all day inside on Saturday resting, did a little bit of reading...played Candy Land and started to play Sorry with Brian and I...Becca was at a play date (thanks Leslie and Michelle). He did great with both games and even told us when he needed to stop to rest. Saturday night we went out to dinner and he did well then also.
Today, he went back to Hebrew School and did great. Lasted all 3 hours with out saying he needed to come home. You could tell afterwards he was a little tired but he pushed through some until we could get him home around 1:20. Then he told me he needed his cough assist...I love that he is getting more proactive with telling us what he needs. He rested a little bit and then after dinner reminded Brian and I, numerous times, that we needed to finish our Sorry game...and you got it he won.
Take a look at the photos and the wonderful poster Ms. Cathy, Mr. Jim, Joey and Jillian made for Ian..

So happy to hear Ian is doing better and becoming stronger. --Shara Freeman

Great to hear this!! I'm so glad Ian is doing so well and you guys are getting back to normal! --Audrey Kline

This is great! So glad to hear that Ian is doing so well. Marci, I'm sorry I didn't get to stop by on Friday. I'll try tomorrow. -- jamie leboe

Love weekends like that. We love Sorry over here....we have the Disney version and we play it all the time. Glad to hear Ian is feeling better. --Maureen Herban

I'm so glad things are getting back to normal with you guys. And what's with the kids beating us at these games?? Logan got me at Scrabble AND Yahtzee last week! --Elena French

This is wonderful news!Glad to hear that Ian made it through Hebrew school. Keep up the good work! --Tamara Flax

January 6, 2012

Well the week has been good, Ian continues to work hard to gain his strength back. He went to the doctor and was given the go ahead to go back to school...when he was up to it or we thought he was up to it. He spent most of this week home with many different people. He watched TV, played games, napped, even stood in his stander for a little bit. This week we celebrated Pop's 70th birthday and it was great to have all of his kids around him as he blew out the candles...I did make everyone use hand sanitizer as they walked into the house...
For two hours today, everyone was back to their old got it, Ian went to school. He did great, lots of people were very happy to see him and he got lots of hugs. After 2 hours, he told his teacher that he was very tired and wanted to go home...glad he can advocate for himself. We will continue to work on him getting stronger, he will go to Hebrew school on Sunday and back to school on is for it being more then 2 hours but we will take what we can get.
Everyone enjoy the weekend.

good for him and for you. Glad some of the routines are getting back. --Annelise Sullivan

So glad Ian is back with family and friends!
Love, Miriam Foss

Glad to hear of the improvement! Hang in there! Jenny & Andy Dansicker

Yay! Wonderful news. --Melissa Willen  

So happy to hear such great news! --Stacy Lunenfeld

Good news! --Tamara Flax

That's great news!! Txs for the update. --Claudia Gonzalez

January 2, 2012

It's hard to believe that kids go back to school tomorrow after winter you all know, we did not spend winter break together but we did get go bring in the New Year together and that was wonderful. Becca and Ian were happy to see each other...gave each other the biggests hug I have seen them give each other in a very long time. They told each other how much they missed each other and loved each other...we will hold that one dear as who knows when it will happen again. Sunday, we just relaxed around the house for the most part. My parents came over to see dad, "Pop", had been recovering from his own stuff and his MD's would not let him come to the hosptial to see Ian....this was very hard on both of yesterday, Sunday, Jan. 1st was the 1st time they had seen each other since Ian started getting sick and ended up in Hopkins. It was another great reunion. The two of them were both back up to their normal stuff...
Sunday afternoon, Becca and I went to my sisters for our family Hanukah was good to be out and about even if it was not all of us. Then Becca and I came home, the 4 of us watched the Ravens game...way to go...
Today, have been another quite day. Ian is making good progress...he has been sitting in his wheel chair...even drove himself around the house a little bit, stood in his stander for a little bit (watching Diary of a Whimpy Kid and started dancing to the music). He has been eating well (for the most part) and playing on his mobigo. We even started doing some of his missed school work.
Tomorrow, Becca will go back to school, Brian will go to work and Ian and I will stay home. I plan on making lots of phone calls to doctors to make appointments and try to get him back into physical/occupational therapy an extra day this week. Just continuing to take it one day at a time and working with him as well as the whole family to get back to life.
Have a happy and healthy new year everyone...more to come on our superhero "Ian."

I'm so glad Ian's home! Tell him that Isaac and I send our love:) --Abigail Woloff

We are always here for you...Love you guys..Alison Pascucci Sapperstein  

Call me when you get a chance! Tell Ian hello and give him a big hug from me. Trish Redding

Happy New Year Ian! You are a real trooper! The class cannot wait to see you! You will have two new classmates when you return- Jaila whom you "met" on the video and Damon. Nichele Arruda

glad all is going well. I want both of you to know that I really think you are the greatest.
Love, Aunt Leslie  

So glad Ian is home and back with the ones he loves so much.
Happy and Healthy 2012!
Love, Miriam Foss  

So very happy Ian is doing so well. Great way to start the new year. Keep up the great work. --Susan Ritmiller\\

lcome Home, Ian! So glad you are all back together again at home. We look forward to seeing you at Chizuk in the very near future!
Marsha Yoffe

great news!
love Jenny Baker

Hi everyone........a happy and a healthy New Year to good to hear that Ian is home with the rest of you and that he is doing's wonderful to see what a happy and loving family you have ....enjoy the new year!, Uncle Bruce

Welcome home! I'm happy to hear that Ian is home. One day at a time! --Tamara Flax

December 31, 2011; Saturday

Happy New Year to all. We wanted to wish everyone a very happy and healthy 2012. For us we will be starting 2012 off all under one roof, yup...we are waiting for the PICC line to be pulled and the final discharge orders to be written and then we are out of here...

We will still need some time to recover at home, after all laying in bed for 12 days can really be tiring..but we are going to start off slow and work our way back into the world and our normal routine...

Happy and Healthy to all and thank you for all of the kind words and support over the last few weeks....more to come on our recovery at home.

We are so happy Ian is going home!!! Happy new year to you all and let's definitely set up a time Becca can come over to play with Olivia. Take good care and see you soon.
Love, Michelle Clay

HAPPY NEW YEAR to you all may it bring health and happiness. -Ann Gorton

Hey Guys. I am glad to hear you are all home. I'd like to send some food over. Let me know if you want breakfast platter, lunch or dinner and your address/telephone number. Thinking of you. Love, Julie, Peter and Gussie Belt

I'm so thrilled for all of you! It is a Happy New Year. --Trish Redding

We are so happy to hear that you will be starting this new year off together at home. Good luck to you all and may 2012 be filled with happy memories.
Andy & Jenny Dansicker

So happy for you guys. Hoping this is just the beginning of good news for you as we head into the new year. --Cheryl Mendicino 

Congratulations! What a great way to start the year. --Annelise Sullivan

YEAH! Happy Healthy New Year! --Lynne Lichtig

what wonderful news! Great way to star the year!
Lots of love, Jenny Baker

YEAH!!!!! Happy New Year guys! Great job IAN! You gave mommy, daddy, and Becca a GREAT New Years Eve gift! Have a happy and healthy year guys!
Scot, Connie, Rylee, and Grant Lippenholz

Wishing all of you a happy, HEALTHY 2012! Glad you will be under one roof! --Miriam Golob 

I am so happy to hear this!!! I know Ian must be so excited to get back to his house and his sister!!! Happy New Year! --Jodi Postol

Hooray!!!!! So happy that Ian is being discharged! He is one tough little guy! Please give him a big hug from me. Best wishes for healthy and happy new year! --Kathy McCormick Gray

So happy for all of you! HAPPY AND HEALTHY NEW YEAR TO YOU!!!!! --Leslie Hollins

So happy for all of you! HAPPY AND HEALTHY NEW YEAR TO YOU!!!!! --Claudia Gonzalez

Happy New Year, Scher family! --Elena French

Very happy to hear that! Happy & HEALTHY New Year to you all!  --Shara Freeman

I'm happy to hear that Ian is headed home! Happy and a healthy new year to your entire family! --Tamara Flax

Fantastic news! So glad the four of you get to start 2012 together! --Karen Maimone

So happy for you, here's to a HEAtHY and Happy New Year!!!! --Stephanie Weinstein

What a great New Year's surprise! I am glad to here you are all getting to spend the night together! --Jenn Frisch

So glad Ian is going home! Happy and Healthy 2012 to all. With love, Miriam Foss

So happy for you! Good wishes for the New Year! --Carol Zika  

Yes I'm so happy! Happy new year guys :) see you soon. --stephanie rabinowitz

Mazel Tov and Happy New year to all of you!!! :) --Heather Schwartzman Hackerman

Yay!!!!! Happy new year! --Bonnie Goldberg

That sounds wonderful.....I bet Ian will be happy to see his own bed. Only happiness and good health to you all in 2012. --Maureen Herban  

Such great news!! Happy New Year! --Stacy Lunenfeld

What a great start to the year! I'm so happy that you will all get to be home together. Best wishes as always!
Love, Alyssa Postman

December 30, 2011 7:37pm

Just waiting for a room to be cleaned and everyone that just came on shift to get situated and away we go.   Just to clarify...that means WE GETTING OUT OF THE PICU

Awesome !!!!!! --Susan Ritmiller 

What a great day! Now we can all have a happier new year!!! --Lisa Lewis

Yay! --Carol Zika

All the Paiges send lots of love! So glad to hear the little man is improving! Yeah Ian! --Barbara Paige

you are moving in the right direction!!! Wishing you all the best!!! --Laurie Schimmel

great news! --Jamie leboe

Enjoy your new room, Ian. One last step and then you're home! --Elena French

Finally! Happy New Year! What a way to begin a new!!! --Leslie sands 

I am so happy for all of you! This is wonderful news!! --Laurel Nordyk 

one more step closer to home. I am so happy for the entire family. This will be a good New Years.......
Aunt Leslie

EXCELLENT!! Going to the floor is always so liberating, only one more step to home!! Superheroes rock!!! Much love your way, Lara Wynne

Yeah!!!! Hello to Ian. Xo --Claudia Gonzalez 

Yippeeeeeeeeeeeeeeeeeeee!! What great news. Music to everyone's ears. --Jo Greenberg

This is excellent news! I am sure that Ian is excited to be making the move. --Jenn Frisch

December 30, 2011 --QUICKIE UPDATE

Well, here we are on day, oh I have no idea anymore, but things are progressing rapidly. Yesterday around noon they took Ian off bipap for his sprint. The original goal was to go two and a half hours the way he did the day before but with the hopes of going further if Ian was doing ok. Well after 9-10 hours of nonstop sprinting, the docs decided to see how Ian would do without the mask over night. Low and behold, he did excellent, no issues. Therefore, at this point in time and no reason to think otherwise, the bipap mask and oxygen mask are no longer. Also, today he is going to be started out on liquids very shortly for lunch and moved up to more solid foods. Ian is on the waiting list to move to the 4th floor where the "regular" rooms are. All is very good news. Oops, hold that thought, I am being called. Will be right back.
Well Ill be ****, reason I was called back to Ian's bedside was because the nurse was just given directions to remove the NG Tube completely. Thats the tube that was running in to Ian's stomach to get rid of any extra air trapped in there. So one more thing down. Just waiting for the ND, feeding, tube to go bye bye, which cant until he shows that he can tolerate food again at this point.
So there we have it folks. No reason we could not be out of here within the next few days but thats just speculation on my part. Hopefully next update will have only a few words.
Thank you again all for your best wishes and such.

Great news!!--Mindy Wassel

Hi Marci,
Such good news about Ian! Our love to all four of you!!
Miriam Foss

Good work're getting better each day because you are a brave boy.....and you have a great mom and dad and sister to help....we're all very proud of you....keep it, uncle Bruce

Thank you so much for providing these updates. Please let me know if you need ANYTHING at all. We love you all and will be keeping the prayers coming! xoxo, Melissa Willen

Love Aunt Leslie

NICE!!!!!!!!!!!  --Jill Suffel

Yay Ian!!! So glad to hear that things are going so well and you all will be home soon. :)
Tara Webb & Duncan Green

keep up the good work, Ian, and keep up the good spirits, Mom, Dad and Becca!  Annelise Sullivan

Hi, Precious Boy,
I miss you so much and I am really looking forward to seeing you again very soon. Continue on your road to being well again. Remember that I love you. --Rachel Ely

Great job Ian!!--Mary Shimkaveg

Hang in their Marci and Brian. You guys are so strong and doing such an amazing job! You are all in our Shabbos prayers tonight! Go Ian, go! Love, Andy & Jenny Dansicker

terrific news!
Jenny Baker
Great news!!! Keep up the good work Ian!!--Jodi Postol 
I'm so happy for all of you!!! GO IAN! ---Leslie Hollins
YAY!! We are so happy to hear about Ian's fantastic progress. Keep up the good work, Ian! We saw Spiderman in Florida and he told us to give you a big hug as soon as we see you:)--Miriam Golob
Wonderful news! Happy New Year to all of you. --carol zika
Yay Ian!!! Proud of you bud --Courtney Heller

See. Lot's of praying actually does help! --Leslie Sands

That's great news! Hope Ian is back home soon!--Sid Keiser 
Way to go Ian, keep up the hard work!!! Stephanie Weinstein
Wonderful news! Hope Ian got the cards the kids dropped off yesterday. He is such a fighter! Way to go, Ian!--Karen Maimone

Oh, great news!!! What a relief! Ian is such a trooper!! Love you all! --Lisa Lewis

Wahoo! Great job Ian. I am glad to hear that you are feeling better. Hope to see you out and about soon. --Ms. Jenn (Frisch)

December 29, 2011

Last night and today have been going great..they sprinted Ian last night or should I say early this morning from 3:00 to 5:30am and he did amazing. Just as amazing as earlier in the day. He has been sprinting since 12:30 this afternoon, it is now 6:25…they are letting him go as long as he can. The RT even did his vest chest PT and he held his numbers steady. Not sure what they will do for sleeping yet, will have to see what the night shift doctors want to do. For the most part Ian’s spirits have been good, we have had a little bit of down in the dumps with him wanting to go home…and who can blame him…I want him to come home as well. We still have a ways to go as he is still not eating by mouth plus we need to see what doctors are going to do for sleeping and the bi-pap. His oxygen levels have been holding steady around 98 and the staff here are getting to see the true Ian…the funny little man that he is. They stopped his anxiety medicine this morning and he has been doing great without that. He just asked me to addition it is amazing to hear everyone who walks by say how amazing and good he looks...way to go my superhero...
We are all holding our own and just taking everything one day at a time…Becca has been a true trooper the past week and a half…as well as Brian and I…it has been a lot of juggling with many different things and for that I am very proud of Becca, Brian and Ian…they have all been wonderful and shown true strength…I love all of you with all my heart.

Still following along and glad Ian continues to make progress. Wishing all of you a healthy New Year!---Trish Redding

That's great news!! Way to go Ian!! All of you are superheros!! Our thoughts are with you.---THESHA LEWIS

Just read the update. Great news!!! Not only is Becca a trooper along with Ian but Marcy you and Brian are remarkable. You know that everyone is with ALL of you. Ian, my Spiderman picture is old. When you get better will you make me a new one for my office?
I Love you,
Barbara Lichter

I'm happy to hear that Ian is doing better. I'm sure that he does want to go home. I don't blame him. Becca - keep up the good work at home.--Tamara Flax

Love you guys....Alison Pascucci Saperstein

Wonderful news! We will continue to send all our warmest wishes his way. All of you are truly amazing.--Leslie Hollins

Strength indeed--all of you! Great news on Ian, and you will all be home and healthy before you know it.--Elena French 

I am so happy to hear the good news. Keep up the good work Ian!--jamie leboe  

Marci, you as always have shown me true strength and courage in this situation. Somehow and someway you seem to stay strong. One of the many qualities I have come to love in you. Thank you for being who you are and all that you give. I love you so very much.
To my little hero Ian, I will always have a deep respect, love and definitely admiration for you no matter what. The way you handle the every day struggles you have to go through is absolutely amazing. You are my true superhero just as Spiderman is yours. You are my best buddy always and forever. Love you with all my heart and soul buddy. Brian

Love to all of you guys! You are all amazing! I can just picture Ian's contagious smile!--Lisa Lewis

Keep up the good work! It is so good to hear good news! Your family is in our thoughts!!!--Stacy Lunenfeld

Oh, what great news!!!! Thanks for updating everyone. Kudos to the Scher family for their courage, strength, and determination. You all are an inspiration!--Jo Greenberg

December 28, 2011 A FRIENDLY REMINDER

"What lies behind us and what lies before us are tiny matters compared to what lies within us". ~Ralph Waldo Emerson
A person who has been dear to me reminded me of what my status was a year ago on facebook....hard to imagine it has come back around a year later.

Marci, your sister is not the only one in awe! Both you and Brian are handling Ian's issues with so much strength and dignity. Dad and I are both proud of what people and parents you have become.--Sheila Weinberg  

Sending good thoughts and healing wishes to Ian and your family!
Much love to one of my favorite campers!
Love, Dori Zvili  

All things are possible through God who strengthens me... Your family is an example of handling things with grace and strength. I will say prayers for all of you. Thanks for including me in the care pages. XOXO  Carolyn Horn Sawaya  

Its nice to hear Ian is doing better, Im so glad you mentioned this wall too me. I had no idea the severity of what was happening.
You have an incredibly strong family. Everyone is pulling for Ian's recovery and return home.
Miss you,
xoxo  Claudia Gonzalez  

Brian and Marci,
Please let me know if I Can help in any way. I am always available to entertain/ babysit :) Susan has summed up both of you so beautifully. I hope Ian is home with you very soon!
Barb Paige  

I agree about the bravery! You 2 are both amazingly strong and centered - Ian is a lucky little boy to have a Mom & Dad like you.
Still praying for him - so happy to hear positive news.
Lots of love, Jenny Baker  

you both are wonderful people. I think Susan said it all, when she said she was in awe
Aunt Leslie  

You, my sister, are one of the strongest and bravest people I know. I am in awe of you. --Susan Lewis

December 28, 2011; It's Brian Again

Well here I am back sitting in the hospital while Marci, the stronger of the two of us, heads home for some much needed R&R. But I wanted to give you all a wonderful update. All your prayers and well wishes during the last week and a half have been just wonderful and appreciated. They are certainly doing the trick. Around 12:30 today I arrived at the hospital and met up with Marci in the cafeteria. She wanted to get back upstairs by quarter to one because of his chest PT and such. Well to my surprise, I walk in to see Ian sitting there in bed sans bipap mask. Also he had no oxygen mask on either. The RT(respiratory therapist) stated she had basically just gotten to the room and did his chest PT. All that went fine and of course Ian didn't enjoy the feel of yet another tube going down his nose and throat but he doesn't have a choice. So anyway, here it is almost two and a half hours later at 320 and Ian still is off all oxygen supplies. His saturation level has stayed steady at 97-98 the entire time except for a couple of times when he coughed, good coughs too, when the sats level dipped to 93-94 but went right back up again. He is also currently sitting in his wheelchair playing his mobigo game and hasn't stopped since. I just wanted to take these quick moments before his chest PT, cough assist and such all start again around 330. So thanks again for all the well wishes and prayers and they are making their way over to Ian as we can see but this huge step forward. Keep you all updated. 

Prayers and strength to all of you and for Ian to come home soon!--- Shara Freeman  

What good news. Really glad to hear that he is progressing so well. We will continue to send our positive thoughts and prayers in your direction. --Mary Maslow  

We will continue to pray that Ian gets stronger and healthier. I know how hard it is to be at the hospital for a long time. Please let me if there is anything we can do to help. --Carye Everett 

Such good news! Been thinking about all of you today. I have some out of town company. Still checking in and sending positive thoughts your way. Take care, Trish Redding
Awesome! --Barbara Paige
Zach asked us to please send Ian his get well wishes and let him know he is missed at Cub Scouts! We are all thinking of him, and are glad to read that he is improving. Our thoughts are with all of you! Keep up the great work Ian, you are such a strong and amazing little boy! Samantha, Mike, Sarah and Zach Schaefer
Great news! Hope the good news continues!--Helen Dagilis
What wonderful news! Keep up the good work, Ian. --- Annelise Sullivan 
Brian and Marci,
We just found out about Ian and are so sorry for everything you are going through! You are amazing, strong parents and Ian is so lucky to have you!! Stay strong and know that our thoughts and prayers are with you and your family!!!! So great to hear that things are on the upswing!!
Stacy and Steve Lunenfeld  

Attaboy Ian!....keep up the good work!...You'll be feeling better and better.....I'm thinking about you.....Uncle Bruce

So glad to see this update! Way to go, Ian!! --Audrey Kline  

Keep up the good work Ian  --Aunt Leslie

This is the best news I have heard in weeks!!! --Lisa Lewis

Great news! Keep Up the good work Ian. Thinking of you...Mindy Wassel

Great news Brian! --Kevin Appleby

So happy to hear your good news. We will continue to pray for your whole family. May you find peace in the days ahead. Jenny & Andy Dansicker  

What wonderful news. Glad to hear about such an improvement for Ian. I hope it continues!! :) --Lanaye Hoover  

Fantastic news!!!!!! --Karen Maimone

YAY IAN!!!!!!!!!! WOOOO HOOOO!!!! :)-- Heather Schwartzman Hackerman  

Such wonderful news to read! Keep up the good work Ian!!!--Stephanie Weinstein  

Thank Goodness! Way to go Ian!!!! --Leslie Sands  

This is great news! --Tamara Flax

What a wonderful relief! Great news!  --Elena French 

So wonderful to hear!!! Still will be keeping you all in our prayers and thoughts.
Lynne and Larry Lichtig  

Wow! What great news. Thanks for the update! --Jo Greenberg  

That is great news.... That's the kind of think I want to hear. Keep it up IAN!!!!--Scot Lippenholz  

I am so grateful!! xoxo. The picture you sent is priceless. --Aunt Susan 

So happy to hear good news.--Rachel Levitan  

Brian what fantastic news, thanks for sharing!! Prayers will continue and hopefully Ian will continue to improve so you can all come home. --Susan Ritmiller

December 27, 2011

Ok, so steps forward always lead to steps backwards. Ian did great until 5:00am. At which time he took a spiral back, just like the other night and yes he was knocking on the intubation door again. They were able to prevent it, again…but everything was out. Brian said when they came to get him, there were 8 people in the room but by the time he called me at 5:30, there were only 3 people around him. What they are saying is that he gets some mucus hanging out in his lungs and he can’t cough them up, then he starts to have problems breathing, which starts the anxiety…after all who won’t start with some anxiety if you couldn’t breath. So they have decided to be more aggressive. They have increased the number of times they are doing the chest PT vest, added cough assist back into the program as well as suctioning. They are getting all sorts of mucus and secretions out…In addition, they have gotten him out of the chair for about 30 minutes today, he did okay but more because of the soreness then his breathing issues. So we are going to work on some range of motion, after all we would all be sore from laying in bed for 8 days. They just finished with his 4pm treatment, and he did wonderful….Brian has gone home and I am back at the hospital. We are two ships passing in the room…hoping for our family to be back under one roof.

Marci, that's great he was able to get out of bed for a bit. When we were in the hospital with Tyler's pneumonia the respiratory therapist and the doctors said that moving around is very helpful. When they are in bed for too long things settle and it becomes harder to cough and recovery slows. I hope each day he gets better and better! --Amy Samay

i cannot wait for everyone to be home, happy and healthy!!!  --stephanie rabinowitz

Thinking of you guys. I am sorry that things have been so crazy. Hang in there. It is good that you can be with Becca some of the time. Hard to balance it all but you are all doing it well. --Lisa Hess

Thinking of all of you, please give Ian a BIG hug from us. Feel better soon!!! If Becca would like to come and play, hang out or whatever please do not hesitate to call. --Stephanie Weinstein 

sending positive healing vibes to Ian and sending lots of love to the whole family! Please if you need any help with Becca Eva would love a play buddy! ~ Jessica and Eva Dorsey 

Please tell Ian we are praying for him. Alex said "Ian knows we are best buds forever". --Susan Ritmiller

((BIG HUGS and KISSESS)) for my big guy!!! Stay strong Ian!!! :) --Heather Schwartzman Hackerman

Thinking about all of you and hoping Ian gets better soon. Please give him a kiss from me.  --Michele Heller 

Get well soon Ian!  --Leslie sands

All my love to all of you!  --Lisa Lewis

Marci, I am so sorry that you are going through this. Lots of love.  Jenny Baker

Marci, Please know I have you and Ian as well as Brian and Becca in my thoughts and prayers! I hope Ian gets stronger as each day goes by. Much love and warm thoughts!! Lisa Miller

sending lots of hugs to you and Brian. Please let me know if you need anything!! --Laurie Schimmel

Marci - you and Brian are doing a wonderful job. Keep that in mind. This is a hard time for all of you. Lean on your friends and family. That is what we are here for.
Ian, keep moving forward. We all love you. --Tamara Flax

Ugghh! Hopefully more chest PT and suctioning will help bring all that junk up! I wrote an e-mail, but in case you didn't get it, I am offering again to come down in the evening after Dermot gets home from work and sit with Ian while you guys take a break. I am an experienced monitor watcher and bedside vigilante. Let me know...Lara Wynne

Tell my boy I love him. Sending prayers for an uneventful evening. Spiderman dreams for my favorite Ian tonight.....Aunt Susan

Keeping you, Becca, Brian & of course Ian in our prayers.---Annelise Sullivan

Our thoughts and prayers are with you every minute. May Ian get home healthy very soon. Yours, Jenny & Andy Dansicker

We also hope you will be under on roof again real soon. Hang in there because you are still my idol. If there is any thing we can do for you, please do not hesitate to ask.
Aunt Leslie

I am hoping Ian is on the upswing. I'm thinking about you and sending you all my best.....Heather Young

We are all hoping that Ian gets better soon.---stan chupnick  

These are the times that try men's souls. You are a true family to be able to pull this off. Blessings, friend.--carol zika  

Marci and Brian: Again, we are keeping you in our thoughts and prayers and if there is anything we can do, please let us know. Becca is always welcome and if you need us to do anything, we are here. --Sara Hoffman

December 26, 2011; Night Time

Ian did great with the sprint this afternoon, he was on a regular oxygen mask for about an hour and a half. He actually asked to go back on the bi-pap, I guess he realized he felt better on it but you could also tell that he liked being off of it and not having the huge mask on. Ian gave Brian permission to sleep at the hospital tonight so I am sleeping home with Becca...Ian, Mommy and Becca both thank you. We hope you and Daddy have a great night and sleep tight...Becca and I are going to sleep now...and looking forward to a good day tomorrow.

Thinking of you! Please know your family is in my thoughts! ---Laurie Schimmel  

So glad to hear Ian did well on the oxygen mask. Sending get well wishes and hugs. ---Kathy McCormick Gray
Katie Kane

Hi Ian,Just found out you are in the hospital. Pop told me last night was only fair. Bummer! I need you to get going so you can draw me some more Spiderman pictures. I hope today is going to be better. Love you, Barbara Lichter

Good for you, Ian. You're doing great!! Everyone from riding says hi and get well soon.  ---Peggie Roland

Happy that everything is going in the right direction. All our love, Aunt Leslie

Glad to hear the good news! I hope you get a good nights sleep.   ---Jamie Leboe

great news! Have a good night! --Jenny Baker

Way to go Ian!! ---Lisa Lewis