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Wednesday, December 18, 2013

Sleep Study

Well the boys are at Mt. Washington Pediatric Hospital for Ian's sleep study number. ...5 (I think). Here is to a restful night and Ian not needing any adjustments to his vent settings or oxygen added to his treatment. Sleep tight and sweet dreams. 

Saturday, November 30, 2013

IT TAKES AWAY

I was reading another parents blog about SMA. So many things he said hold true, things I don't even think about often anymore but still hold true and are part of our daily lives. IT TAKES AWAY!

Over the years we have watched VRK1 TAKE AWAY from Ian, even before we knew what IT was...we have watched IT TAKE AWAY. I have watched IT TAKE AWAY from Becca, Brian and I as well as family members and those close to us. You try not to let it take, you put your foot down, yell at it, put up your best effort. Sometimes you realize it is happening other times you don't. When you have a baby you know, you will bathe it, change it, feed it, get up with it in the middle of the night...as the child grows they will do all of that for themselves. We watched Ian start to do all of that and then...IT TAKES AWAY. The trust that he has to put back in you as you begin to do it all for him again and will continue to do as IT TAKES AWAY.

It is isolating for all of us, regardless of how hard you try for it not to be. Out and about,  you are still on, that trust is even more evident when we are not in his usual environment. As parents, Brian and I can't "hang" out with others the way others do. We can't leave our children with the other children to play, to do what it is they do. We do what we do...taking care of Ian as IT TAKES AWAY.

Treasure yesterday, dream of tomorrow but live for today.

Monday, November 25, 2013

As Thanksgiving and Hanukkah Approach

Thanksful for so many things it is hard to know where to start. While we have good and bad days, some really good and some really bad, we could not get through them without everyone in our village. Regardless of what role you play in our village,  we are thankful for you.
I am thankful for every day we get to have as a family of 4, for all the laughs,  all the memories,  all the fights,  for all the frustrated moments; because we have them together. I may not be so grateful for some of those times while we are in the moment but I have learned to look back on them and be grateful for them.
Part of Hanukkah, deals with the miracle of the oil lasting 8 days when it shouldn't have...our miracles are Becca and Ian and everyday we get with them.
Our forever hands, Becca and Ian holding hands.

TREASURE DREAM LIVE

Friday, November 22, 2013

All Is Going Well

We have been home since Wednesday late morning and all is going well. We are adjusting to all 4 of us sleeping under the same roof and getting to spend time together, it is great.
We are looking to start Ian on home and hospital, the paperwork has been filled out, now we wait for an IEP meeting and then go from there. As usual, the school system does not make it easy...
Have a great weekend from our tinysuperheroes. 

Tuesday, November 19, 2013

How many times do you get to bring your baby home from the hospital?

When you bring your baby home from the hospital, you think it will be the only time... then things happen and you are on your 7th time bringing your baby home from the hospital... today is the 7th time in 10 years we get to bring Ian home. It special each time. Today as we were loading every thing into the van,  I looked over and Ian was kissing the air, taking it all in. Welcome home again baby boy,  we love you.

Hopkins - Day 9

Rounds this morning were good. It was decided Ian would be discharge in the morning. So all good things must come to an end... the IV blew this evening... I guess it agreed that it was time for him to come home. The treatment plan is still up in the air as the on call pulmonary M.D. was waiting to talk to Ian's main pulmonary doctor. So tomorrow morning after taking Becca to school, it is to Hopkins I go to bring the boys home. Tomorrow night we all get to sleep under the same roof. 

Monday, November 18, 2013

Hopkins - Day 8

Pretty much the same stuff is going on here. The doctors want to push it and try to get 10 days of antibiotics into Ian, this is really not a surprise to us and we are actually happy that they are doing that instead of just saying we got in 7 so let's be done. His IV is still doing well, if it goes before day 10 then we will be discharged, if not then we are here until day 10...that would be Wednesday. So we will just continue on.

Many have asked about visiting us in the hospital as well as home. We love to have visitors as well as helpers around the house, however, we do have one request in order to keep Ian as healthy as possible. FLU SHOT, we know we can't make you get one, but we can politely refuse your visit or help. Please understand when asked "Have you gotten your flu shot?" and your answer is no, when we say no thank you.

Sunday, November 17, 2013

Hopkins - Day 7

Well today was pretty much the same as the past few days. Hanging getting iv antibiotics. The M.D.'s said that today was actually day 6 of therapy since he started so late on Monday. They want to get at least 7 days into him, so tomorrow we see if they are going to continue into day 8. Sleep well boys. The girls love you.

Made Him Mad

As any good mother should do from time to time. Ian couldn't decide what he wanted to eat for lunch after going thru all the choices on the menu and his answer was no to everything, I told him to starve. 

Saturday, November 16, 2013

Hopkins - Day 6

Today is another good day, really just hanging out getting IV antibiotics. After Becca and I worked at the Girl Scout cookie booth sale this morning we came down to visit Ian. The four of us had some time together before other visitors came. Nana and Pop gave to hang out as well as Aunt Dana and Noah. It was great to see everyone and play games. Hoping for a good night. Remember treasure yesterday, dream of tomorrow but live for today.

Friday, November 15, 2013

Hopkins - Day 5

Last night and today were good.  Tonight I was able to take Becca down to the hospital. It was great to see the kids together and have dinner as a family. Tonight when Becca was getting into bed,  she said it was great to see Ian again,  felt like it has been years... love her.

Thursday, November 14, 2013

Hopkins - Day 4

All is good. Last night was a good night,  we all slept and slept thru the night. We spoke with the pulmonary doctors last night and they are hoping to get at least 7 days of antibiotics out of him. Right now the iv line which was placed while in the ER is still good. If it does not hold up we will take it from there, one step at a time.
Ian had a special visitors today...Olive. I think Yuba could have a competitor... the smiles on his face was wonderful. Olive came to visit right before we headed to the 10th floor. And yes the sign in his room said "welcome back Ian". We were very happy to see some of our favorites again.
Looking forward to seeing good night again... boys sleep tight at the hospital while the girls sleep well home.

Gilchrist Blog

A few weeks ago I was asked to write a blog piece for Gilchrist regarding our experience, enjoy:

Wednesday, November 13, 2013

Finally....

Sleeping at a reasonable hour....not at 2am. Now time for mommy to get to sleep.

Hopkins - Day 3

Rough night. Ian could not get comfortable, needed a few doses of benadryl to help him sleep. His oxygen levels were good, did not need any. This morning they tried to place a Picc line but were not successful. His veins are crap. So the new plan, to stay in the hospital and get as much iv antibiotics as possible with whatever peripheral iv sites they can find. So we are here until... who knows when...

Tuesday, November 12, 2013

Hopkins - Day 2

Once we were finally settled we went to sleep around 2am. It was a good night,  Ian did not need any oxygen and slept well. I did not sleep as well. We are still waiting on cultures to come back, the plan is to have a PICC line placed, most likely tomorrow. And to go home on IV antibiotics, perhaps tomorrow or Thursday. Ian's spirits are good. I spoke with Becca this morning and she was good, said she was going to do her best to concentrate and not worry about Ian...XO my beautiful. Brian and I are hanging in there, just taking it one day at a time and working on getting what we need while in Hopkins to care for Ian as well as for when we get home. 

Thank you to all for the wonderful messages, whether text, email or Facebook checking in and seeing what we need. We love our support system. 

Monday, November 11, 2013

Hopkins... Day 1

Well we spent the weekend doing everything to not end up back in the hospital but it did not matter. We are back in Hopkins... this infection is doing a number on Ian. Every time he finishes the antibiotic, 2-3 days later he starts showing signs of infection again. He is currently on his 5th round of antibiotics since October. This time we also increased his pulmonary treatments to every 4 hours.  Starting Friday night, he has been needing oxygen every night as well as for a few hours in the morning.  We have needed to suction more often as well as there has been blood in his secretions. So after spending the weekend working with his Gilchrist team and speaking with his pulmonary team today it was decided we were out of options for keeping him home. We got down to the ER around 5:30 and finally got to a room around 11:00.

So far the chest xray looks good.  The initial virus cultures are negative. They did another trach culture, drew blood and did a urine culture. An iv has been placed and iv antibiotics will be started shortly. The goal to figure out what is going on,  the best way to treat it and get him home.

Once we were in a room,  Ian have Brian permission to go home and take care of Becca...the real reason he would not let him leave until we were in a room, I can not drive his wheelchair as well as Brian and he did not want me to have to drive it.  I love my son... Good night all.

Saturday, November 2, 2013

Look How Mad

And all because I was out of mashed potatoes that he wanted for breakfast. I am the worst mother ever...I even asked him and he shook his head yes...its a good thing he is cute. 

Monday, October 28, 2013

Our Crusade

Will you join in our crusade? Who will be strong and stand with me? Somewhere beyond the barricade is there a world you long to see? Do you hear the people sing? Say, do you hear the distant drums? It is the future that they bring when tomorrow comes!
Les Miserables

Brian and I went to see Les Miserables for our anniversary earlier in the month, the above words hit me hard..I put them in the blog and just left them there. This past weekend we were at a family Bat Mitzvah...(Becca did great). I realized just a little bit more that my crusade is: to continue educating, awareness, making sure others don't go thru what we have gone thru to find out what is wrong with their loved ones. We spent sometime with family members we have not seen in a while, until Saturday, it did not hit me...they should be tested as well. Brian and I don't know if our mothers or fathers or both are carriers of the mutation, therefore, not knowing who should be tested...so anyone related to us, should be tested. 

Education and awareness, talking about it, being open, answering questions, that is just one way it to bring the barricade down. No longer being undiagnosed means much more then I realized it does. Knowing what is slowly taking our little boy away from us has been answered but now others will also know what it is. Realizing how many more people are potentially affected by this, our families, anyone in our bloodline can get tested to see if they are a carrier of the VRK1 mutation. So, if and when you want to know, please don't hesitate to get in touch with us. 

WILL YOU JOIN IN OUR CRUSADE?

Wednesday, October 23, 2013

We Are Published....

Please read this article...it will be over most of your heads...however, Ian is the 9-year-old boy in the article. Hoping some new families come out .... a very special thanks to Lelia Jamal and Dr. Raymond...we would not be where we are without either one of you.

Mutations in VRK1 Associated With Complex Motor and Sensory Axonal Neuropathy Plus Microcephaly

Monday, October 21, 2013

Saturday/Sunday October 19th/20th

All is good. Saturday and Saturday night, were both great for Ian. He maintained his levels all day and only desated 2 times but recovered quickly without any intervention from nurses.

Becca spent the day with friends at Hershey Park in the Dark (this was already planned before Ian ended up in the hospital) and had a great time....thank you Thomas's for taking her.

Thank you to my parents, Nana and Pop, for canceling their plans on Saturday night to sit with Ian in the hospital so Brian and I could go out for our 15th Anniversary. It was nice to be out and know Ian and Becca were in good hands...to my best friend...I love you and am looking forward to more of our journey, for the next 15 and 15 and 15 years.

Ian came home on Sunday...yea....home sweet home, last night was a good night with only desating once with a quick recover without any interventions from his nurse. Today he is hanging at home, taking it easy. I am waiting to speak with the peditrician to know what our next steps are with treatment plans and when he can go back to school.

Thank you to everyone for their love and support over the last week....and thank g-d it was a short and easy stay at Hopkins.

Saturday, October 19, 2013

Still doing well...

Night was fair.  Ian had some dips but recovered on his own. After talking with the MD, we all decided to stay one more night to make sure we are headed where we think we are in the right direction. It does appear that when Ian started antibiotics a little over a week ago for an infection he was only put on a 7 day course and that was not enough.  So we are on another 7 day course ... so we are spending the day watching movies and recovering some more.

Thank you all for the love and support.

Friday, October 18, 2013

Doing well...

Ian is doing well. He was on oxygen last night, but has been off since 10 this morning.  Still getting IV antibiotics ....the preliminary results for viruses are negative.  There are signs of possible infection so waiting for the rest of those results to come back. As long as we have a good night they are talking about possible discharge tomorrow.  We are all in good spirits ...

Remember treasure yesterday,  dream of tomorrow but live for today.

Thursday, October 17, 2013

We're back...10 North that is

Well we have spent the day in the ED and now have been moved to a room ...4 times over the past week and a half he has been d-sating at night. Along with increased secretions ... so after being evaluated, some blood work, chest X-ray. Blood work looks good, so does the chest X-ray, it was decided that they would admit him to the floor to see why he is d-sating at night. Look at the cool sign in his room...we are off to get a good night sleep...

Sunday, October 13, 2013

It's Just About Life

Thank you Mark for the wonderful work you to in inspiring others, for putting into writing the words I have not been able to. As you say, It's Just About Life...Until Next Time.

http://markbrodinsky.com/2013/10/13/the-sunday-series-begins-its-just-about-life/

Friday, October 4, 2013

The Invisible String ... Love

Honestly, I don't remember how the conversation began...but I do remember things that were said and the meaning behind them. The four of us were getting ready to have a family game night. Ian got upset because he was missing Bullet, his hamster. Becca was the first one to console him, telling him that it was okay, Bullet was in a good place. He was happy in Heaven running around with all of his hamster friends. She proceeded to tell Ian that he will see Bullet again when they are both in Heaven, when someone or something goes to heaven, we will see them again when we get there. Really, how old is she. He calmed down after that, Brian and I really did not have to say anything, she took care of her twin...love.

Downstairs Becca went to get the game we were going to play...of course I came up with a reason to go down also. I had her sit down with me and ask her if she was okay. She said yes but started to cry. Then I asked her what she thought was going to happen with Ian, "what do you mean mommy", she asked. With his disease, I answered. Becca said, he is going to live a long time, and then the tears started rolling. Are you sure, I asked. This is where she got me...mommy I don't like to think about the future. I like to live in the here and now. Why do you think I like having family moving nights and game so often. The tears were still rolling. The here and the now is good and so is living one day at a time mommy as I don't feel like I am going to be a twin for a lot longer....

What I did not tell her and will the next time something comes up is that she will always be a twin. Just as we have told both kids regarding death, you always have the person in your heart so they are always with you.  We will have to sit and re-read the book The Invisible String again. This book deals with children's fear of being apart from the ones they love, that though we may be separated from the ones we care for, whether through anger, or distance or even death, love is the unending connection that binds us all, and by extension, ultimately binds every person on the planet to everyone else...

Week of Follow-Up MD apppointments

Well when they come, they come...follow-up doctors appointments that is. On Wednesday, Ian got to see his cardiologists...and believe it or not, this MD has nothing to do with the VKR1 mutation. At this point, there is no indication that SMA and cardiac issues are related...part of me feels this is not possible however, with the little bit that is known about VRK1 and SMA...it is what it is. You have to go with the information you at hand and make the best decisions you can with that information. So why does he see a cardiologists...a heart murmur.... ECHO and EKG done, all looked good, no changes from last year. Ian's blood pressure was elevated but that is actually normal when he is seeing MD's, after a little bit, they rechecked it again and it was down. The kicker with this MD appointment is that when all was said and done, it was time to leave...at 1:15pm when the appointment was at 9:30, but no they could not leave...Ian HAD to see pictures of this heart. So we hold steady where we are and go back in a year.

On Thursday, we had two appointments, one with the GI MD and the other with Pulmonary. Ian's GI appointment went well. He has been off of his steroids for about 2 months as well as off the extra supplements thru his g-tube for about 2.5 months, he has maintained his weight. Although we were hoping he would lose some weight we will take the fact that he has not gained anything as a good thing. Dr. K changed the multi--vitamins he is taking to give him some more minerals. Per his 3-day food journal, his only getting about 800 calories, for most that is not healthy but it appears for Ian it is. So we hold steady where we are and go back in 2 months to monitor his weight. 

Pulmonary went well...as with his other 2 appointments, Ian is holding his own. We were not able to get his CO2 level as the machine was not working correctly. Dr. M felt okay checking his O2 level, which we check at home as well...it was 98 while we were there. He ordered a sleep study which will help to determine if his vent settings need to be changed and give him a "tune-up". He took a mucus sample just to make sure all is good...and will let us know if anything is brewing. Besides that and going back to see him in 3 months all is good. To end the appointment Ian got to see some of his xrays which were in the system of his lungs and spine. Inquiring Ian's want to know...

So Ian is holding his own, continuing to give us joy and happiness just as is Becca.

Remember....treasure yesterday, dream of tomorrow but live for today.

Thursday, October 3, 2013

Treasure Yesterday, Dream of Tomorrow, but Live for Today

My facebook post last night....I HATE VRK1...what do you tell your child as they cry to you that they are disappointed in their body...Fxck it.

Last night we had a heartfelt and difficult conversation with Ian. He was in bed, I was finishing up his nightly routine, his face told it all...he as down. I asked him what was wrong, he said he was disappointed in his body and he wanted to walk again. My heart felt. I proceeded to ask him what else was going on, he just kept repeating how disappointed he was in his body. Ian told me he wanted to talk with Brian as well so in came daddy. Ian told us both how disappointed he was, we asked him if he wanted to continue to fight, he said yes. At the same time we told him that when he was ready to stop fighting that was okay. We reminded him that he can do anything he wants with the hands and legs of others. We asked him if that was okay, he said sometimes and other times it was hard not to be able to do what he wants for himself. Told him that we understood as best as we could. It took some time but we got thru it, at the end of our conversation, Ian told both Brian and I that when we were ready to give up and not fight anymore, it was okay. 

Thank you to everyone for your words of encouragement and support last night on my post. Remember: treasure yesterday, dream of tomorrow but live for today.
 

Tuesday, October 1, 2013

Gilchrist Kids

Having a child brings happiness and challenges, having a child with special needs brings happiness and different challenges, having a child with a life threatening disease brings yet more happiness and different challenges...we have faced many of these over the years. When Ian came home from the hospital, in March, we started with many new services, one of them being Gilchrist Kids. Their goal is to help any child "live well" during their last days (regardless of how many days that is) and to provide their loved ones with the support they need during their most difficult time. By providing relief from physical, emotional, social, and spiritual suffering, they enhance the quality of life for seriously ill children and their families. 

Back in January/February, when we were deciding to trache or not to trache, Brian and I said we did not want Ian to just lay around being hooked up to a machine. With the help of Gilchrist and everyone else in our village, we are making many more memories along our journey. 

This article was in the Gilchrist 2013 Year in Review which was just released. 

Below is the article for easier reading:

By the time Ian Scher came home from a 10-week hospital stay in March, he had lost most of the use of his limbs and was dependent on a ventilator to help him breathe. But that didn't mean he'd lost the desire to be as typical a 10-year-old boy as he could.

Within a month, he was back at school and finding new ways to do all of the things that a rare degenerative neuromuscular condition had robbed him of doing.

Instead of pressing the buttons on his video games, he directed others, including his Gilchrist Kids volunteer and Child Life Specialist. He built Lego sets using the hands of family and friends for the actual construction - after he'd figured out where to put the pieces. 

As summer rolled around, he found himself with almost as packed a schedule as his twin sister, Becca. He went to several camps, including a sleepover camp for medically fragile children. And on August 17, he threw out the first pitch at a Baltimore Orioles game; his father, Brian, was with him on the field to make the actual throw.

Through it all, his parents, Marci and Brian, have relied on the support and guidance of the Gilchrist Kids team to help keep Ian out of the hospital and to help them talk through important decisions about his care. Ultimately, watching Ian continue to be able to do the things he loves is validation that they have made the right choices in his care.

"Ian wants to do as much as possible. We know he's still getting a lot of joy."
Brian Scher, Ian's father



Wednesday, September 25, 2013

Out of My Mind ...2

Becca came home from school today and told me they started reading the book. She continued to tell me Melody reminded her of Ian and they inspired her. Really, again my daughter continues to blow my mind. I am interested to know how the book and Melody continue to remind her of Ian.

Wednesday, September 18, 2013

OUT OF MY MIND

Out of my mind...are you out of your mind, I think in some ways we all are. I just finished reading a book called Out Of My Mind...I read it because Becca has to read it for school this year, I plan on reading all of the books she has to read … Out Of My Mind, is a little close to home...it really got me going...wondering what goes thru Ian's mind that he is not sharing with us. What if he could get more words out, communicate easier, what would he say? What do other kids think when they look at him, do they think he's stupid, a retard (ugh I hate that word) .. do kids look at him and think because his body is messed up that his brain does not work? If other kids really took the time to have a conversation with him, what would those conversations be like? Ian has a wonderful sense of humor and a lot to say if others took the time to talk with him. How frustrated does he get when he can’t communicate easily, when he sees others looking at him and making comments, he sees everything; takes it all in - knows everything that is going on. We know it is hard on us to try to figure out what he is trying to say but I imagine it must be much more difficult for him.
Day to day life is different living with a motor neuron disease (MNDs), one that you have to live in to really understand. Every MND is different, every case is different. Each family’s journey brings light to their own sadness and despair along with hope and happiness The emotions run high and low within a matter of minutes. The reality of MNDs, if allowed to think about it , can quickly take you to a deep, dark place. At the same time, the will and determination of those who suffer from it can bring you to a place full of life, joys, hopes and dreams. Even with all of the “little” challenges which come with MND’s, we are surviving. Nothing is simple or easy, everything needs to be well planned out.

Many times I have told people to make your memories...and I believe this more than ever. Tell your children how much they are loved, how precious they are. Embrace them with a love of life and goodness, a love of learning, a love of right and meaning. In Out Of My Mind, some of the kids are mean, bullies, make fun of those with disabilities…since we know some people are evil, we have to do good. We know that some people are hurt by other people, we should be kind and caring to everyone we meet. Remember that those with disabilities are just like everyone else, after all we all have disabilities, what’s yours?

Friday, September 6, 2013

Tips on Life

Looking back over the past year, I think about all, the things we have done, all the decisions we have made; comments/concerns from others (mostly good); conversations we had with each other, doctors, family members and friends. 

I am also reminded of a post I read back in July on an aquentencies blog called Tips on Life. This was a road map put together by a group of counselors for their campers at a sleep away camp. They sent it home with the campers for them to remember and to be able to put into use...it includes some of the simplest rules of life which at times we all forget but should remember:
  • It is okay to ask for help.
  • You do not need to be strong all the time.
  • Nobody is perfect and everybody is fighting their inner battles.
  • Be kind.
  • Treat others how you would like to be treated.
  • Not everything you learn in life will be in a classroom.
  • Anything worth having is not easy to attain.
  • Love is not supposed to be painful, true love is easy.
  • Love is not a maybe thing, you know when you love someone.
  • Do not be reckless with other people’s hearts and do not put up with people who are reckless with yours.
  • Do not be afraid of life, it is meant to be lived.
  • Live your life with no regrets.
  • Try your best with everything, it is better to try and fail then never try at all.
  • Do not put your happiness in someone else’s hands.
  • Destiny is for losers.
  • It’s not an excuse for things to happen instead of making them happen.
  • Be independent, go to movies and eat alone sometimes.
  • True friends are rare and hard to find.
  • Surround yourself with people who truly care about you.
  • You will have friendships that last a lifetime and friendships that fizzle out quickly, this is normal.
  • Is inner beauty important? Inner beauty is very important.
  • A kind heart will shine through.
  • Love like you have never been hurt and live like you were dying.
  • And then there was this line at the end of the letter: If you had a friend you knew you’d never see again, what would you say? If you could do one last thing for someone you love, what would it be? Say it. Do it. Don’t wait. Nothing lasts forever.
This post hit me hard back in July and I asked for permission then to use it (thanks Mark). I knew I would know when the time was right...

I have thought about each of the above tips...knowing that we don't do as many as we would like too. I know we have wronged people over the year, some we may have realized when it happened or soon afterwards, I hope we said "We are sorry" at that time. Some we may not have realized as we may have been wrapped up in our own lives or just did not realized, so please accept our apologies now. I hope over time we remember more of the tips and get better at doing them.

To all of those who have told us that we are strong, an inspiration, questioned how we do everything we do...well our answer is simple...we aren't always strong, aren't always an inspiration, and we don't always do it but it is easier with all the support and words of encouragement we get. It is remarkable who and what is out there. We are just caring for our children, loving our son and daughter, being their parents.


Tuesday, September 3, 2013

Thirty-One....Thank You Mitzi

My friend Mitzi Spiegelman has put this together. There are not enough words or ways to thank her.....




Tuesday, August 27, 2013

Appeal WON

It is still amazing what insurance finds to be custodial care....the end of July we got a denial letter for continuation of nursing services and as of September 22nd no more nursing.  The reason for denial, custodial care, to be exact it said that “Private Duty Nursing Service means Skilled Nursing Service provided on a one-to-one basis by an actively practicing registered nurse or licensed practical nurse. Private Duty Nursing is shift nursing at 8 hours or greater per day and does not include nursing care of less than 8 hours per day. Private Duty Nursing Service does not include Custodial Care Service. The use of skilled or private nurses to assist in daily living activities, routine supportive care or to provide services for the convenience of the patient and/or his family members is also an exclusion. Custodial Care Services means any service primarily for personal comfort or convenience that provides general maintenance, preventive, and/or protective care without any clinical likelihood of improvement of your condition. Custodial Care Services also means those services which do not require the technical skills, professional training and clinical assessment ability of medical and/or nursing personnel in order to be safely and effectively performed. These services assist with routine medical needs and are to assist with activities of daily living. Custodial Care Services also means providing care on a continuous Inpatient or Outpatient basis without any clinical improvement by you. Respite Care services means those services provided at home or in a facility to temporarily relieve the family or other caregivers (non-professional personnel) that usually provide or are able to provide such services for you. Custodial and respite Care are benefit exclusions based on the information provided, the members care would be defined as custodial, and respite care, since the caregivers can and have been trained to provide the care, and the request of the care appears to be for the relief of the caregivers. Skilled nursing visits are in benefit and are available on an intermittent basis for clinical assessment of the member, caregiver teaching and/or training. The skilled nursing visits can be provided, if requested by the treating physician, are determined to be medically necessary, and do not exceed any benefit limit. 

This was shocking to us, with everything Ian has going on medical for them to actual say it was for our respite or  convenience, as well as not seeing improvement, really ....so I set out to write an appeal. It was frustrating to me that I actually had to find the time to write one but I knew I had no choice.  Yes, Ian had Medicaid and they would have picked up the nursing services. However, in order for them to take over an appeal had to be done. I wanted to win the appeal as Medicaid should not have to pay, our primary insurance should be paying. Well the doctor who reviewed the appeal agreed and over turned the denial....nursing services approved until August 2014.

Sunday, August 18, 2013

A Magical Night Full of Memories

Who would have thought we would have gone onto a major league baseball field, something few get to do in their lifetime. Well last night, thanks to the Casey Cares Foundation and the Baltimore Orioles, we got to do just that. Ian had the honor of throwing out the 1st pitch at the game last night, it was a magical night full of wonderful memories we won't ever forget. 

Ian with the envelope which had our tickets. It says FIRST PITCH
Our family and some friends along with some Casey Cares Staff who came to watch Ian.

Waiting on the field for the FIRST PITCH to actually happen.


The Bird on the field.

Ian with Daddy and THE BALL after coming off the field.
Actually being on the field waiting for the first pitch to happen was incredible. It was priceless when the Bird came out onto the field. Ian was happy to see him and the Bird was happy to see Ian as well. He was playing with Ian, winding his arm telling him to get ready for the pitch. For me watching Ian drive out onto the field was priceless, seeing Brian help Ian throw out the first pitch, hearing the crowd cheer for Ian when coming off of the field was beyond priceless...seeing Becca jump up and down, cheering Ian on, priceless. Seeing him on the jumbotron was incredible, his smile lite up his face...and it was so clear when watching it on the jumbotron. 

My eyes filled with tears many times during the evening. While walking to our seats afterwards, a few people said nice pitch to Ian. Once at our seats, you could hear people saying things about he's the one who threw the first pitch. The same when leaving the game...it was great to see all the people cheering Ian on.

A very special thank you to all the people who came to the game to support Ian, to those who took pictures and video and sent them to us.

And the biggest thank you of all to the Casey Cares Foundation and the Baltimore Orioles for allowing Ian to have this honor.




Saturday, August 10, 2013

Camp Simcha Special

Ian has been home for less then a week from Camp Simcha Special and we are back into our routine. Many have asked "how camp was?" It is hard to put into words...it was wonderful. From the ride in the bentley, the helicopter ride, the concerts, photography, woodshop, color war, seeing the men cross the finish line of the bike 4 chai ride (and having one of them give him his metal)...and I can't forget the wonderful staff. 

Dropping Ian off on the 24th of July was hard, we had our meeting with the nurse, the head doctor, the head counselor, the respiratory therapists..got a tour of the camp, helped unpack Ian, made sure his counselor was okay all of Ian's care. Then it was time to leave, Ian was ready for us to leave, his eyes said it all, "when are you leaving mom and dad"? After I kissed him good bye, I quickly walked out of the dining hall, not turning back because if I  would have I may have left him there.

Ian did spend a little bit of time in the infirmary for dehydration; after a day of iv  fluids, he was good to go; however he asked to spend the next night in the infirmary...why you ask, because of the big screen tv. There was another stay in the infirmary for about 15 hours...for diarrhea (sorry if too much information). The medical staff, along with his counselor, Danny, did an amazing job taking care of him and keeping us updated.

We had our moments of home sickness, which got us some phone calls home. Happy mommy, daddy and Becca. After the first time, Danny knew what his face looked like when the home sickness hit and was able to manage it, sending us a message that they would be calling later. Knowing that Ian felt better after hearing our voices, made is feel better as well.

He has mentioned something about camp everyday since he has been home. We could not have asked for a better experience for him, especially with how  2013 started out.

Thank you to all of the wonderful staff of Camp Simcha Special, we are so glad you are a part of our village.

Friday, August 2, 2013

A Photo Says What?

A photo can tell a 1,000 words. It won't tell the same story for everyone.  

The white rock looks out of place.  How did it get there? What went wrong in nature for this to happen? We will never know. For me, I look at this and think of Ian, what am I talking about. ..the out of place rock. ...the out of place letter in his DNA which causes VRK1. How does he feel when he is some place, I hope not out of place, we try our best for him not to feel that way. Imagine sitting around watching others do things you used to be able to do or want to do, how would you feel. Out of place, Ian asks to do something and we figure out a way to make it happen, for him not to feel out of place. For him to feel like he can do anything. So what does this photo really say to me...it does not matter how the white rock got there or why, I am here and can do anything I want....what do you see?



Sunday, July 28, 2013

If You Would Have Told Us....

If you would have told me 6 months ago, we would be here...my response would have been "you are out of your mind." January, February and March had many challenges, bad times for us, to say the least. There were times Brian and I did not know if we would be bringing Ian home, we had some difficult talks with each other, morning rounds brought more unknowns, we never knew what the morning chest x-ray was going to show. Sometimes it was hour by hour, forget about day by day. Over the years as things began to change for Ian, and July 2, 2012 changed "undiagnosed" to  "VRK1" we knew we would one day be in the situation we were those 3 months, we just did not think it would be as soon as it was.

On Wednesday, Brian and I, along with one of the newest member of our village,  Ian's counselor, along with Ian drove up to Glen Spey, New York....the home of Camp Simcha Special. We were taking Ian to sleep away camp, yes SLEEP AWAY CAMP. There were some bumps in the road to get here but we did it....the past few weeks we spent washing clothes, labeling clothes, packing the bags, making stops at stores to pick up last minute things. In addition, washing clothes, packing bags for Becca, Brian and I as well. On Monday, Becca went to Florida with 2 of her cousins to spend some time with Brian's parents. So once we got Ian and his counselor settled in at Camp Simcha, met with the nurses, met the doctors, the respiratory therapies, the unit head, and many more....it was time for Brian and I to have some time without the kids....4 days with no kids. The last time that happened....easily 4-5 years ago. 

During our time, we were in contact with Ian's counselors as well as some of the other counselors we knew thru text messages and emails....here is some of the wonderful things we heard....
  • Ian's told his counselor "I like this camp a lot you guys are my pals". Our night activity tonight was a professional trampoline acrobat show - Ian's face was priceless.  He sat up front and center with a big smile, glasses askew.
  • Ian's having a great day.  Building a glass mosaic at arts and crafts, being lifted up in the air during, dancing at the concert, and got to ride in a Lamborghini after lunch! He even clapped today after his nap. He started the day off very active. Wagging his tongue at everyone and smiling. So far so good we just went for a ride in a Bentley he had a smile from ear to ear. And got to see a Ferrari and a Lamborghini.

photo.JPG



Look at the wave...
 
Another special surprise for the boys at camp was a helicopter ride, we got a video of it and was informed "He LOVED it!!"




Ian being welcomed by the wonderful, crazy counselors and staff at camp. The smile was priceless and a memory I am grateful for.
 
Well it is back to reality as Becca came home today...so back to work and camp for the 3 of us, while Ian continues his journey at Camp Simcha Special...

Sunday, July 21, 2013

We're really doing it

It is hard to believe that we have spent the week labeling clothes and packing the kids. Becca is off to Florida with her cousins to be spoiled by Nana and Pop-Pop, while Ian is off to Camp Simcha Special. Many mixed emotions run thru me, as well as Brian (I can tell by his actions) as we prepare for this adventure we are all about to take. As I sit here, all the bags are packed minus the last minute things. 

Four days without kids, relaxation ...I am not sure our minds and bodies will know how to handle it, they will be in a state if shock. As I say good bye to Becca in the morning I will have to keep myself together; not sure who I will be doing that for more, myself, Becca or Ian; Brian will have to hold himself together later as he puts her on the plane. Then comes saying good bye to Ian, again I will keep myself together; again not sure who I will be doing that for more, myself or Ian...or maybe even Brian.

I know all of us will make it thru the next 2 weeks as we all enjoy the journey and memories we will make. Before we know it everyone will be home under one room and our "normal" will be here again.

Sunday, July 14, 2013

A Much Needed Family Weekend

It was a much needed family weekend. Friday night, we spent the night getting camp things together. Pulling clothes out, ironing names on them...all hands were on deck. Plus a few extra ones.

Saturday was a quiet morning. In the afternoon, we went to see Despicable Me 2, I don't remember the last time we all went to the movies together. Afterwards we went out to dinner, we even had our "other" child with us. It was nice to be out as a family.

And as you can tell from my earlier  post today, we went to the O's game today. We arrived as a family but ended up not leaving as a family, that's ok....the time together was wonderful.

It was still a great family weekend. Now its time to finish up the night and get some sleep for the week ahead.

We Made It....

2 1/2 innings at the O's game.  The heat was unbareable, especially in the sun...where our seats were. While at the game we had a good time hanging out with our girl scout friends. Saw 4 runs come in for the O's and none for the Blue Jays. Becca stayed at the game with wonderful friends who offered to bring her home so Brian and I could get Ian home and out of the heat/sun. Let's hope the O's WIN. LET'S GO O'S.
 

Wednesday, July 3, 2013

A Year Later...

It is hard to believe it has been a year since we officially learned about VRK1 - who would have thought 3 letters and 1 number would have changed our lives in so many ways. That the sequence of one letter in the DNA coding being incorrect could cause all of Ian's issues...that those letters and number only put a name to what we were really dealing with, it did not change all of the symptoms we dealt with, yet our lives still changed that day....July 2, 2012 the search stopped. For me, the unknown was gone, we knew what Ian had, we would not have to wonder any more what was taking away his ability to do the things that we all take for granted. July 4, 2009, Ian started to show major signs of regression, little did we know what laid in front of us. We have been through things most will never go thru, it has brought us closer; I wish we could have gotten closer because of other reasons. It has caused fights over things we never would have fought over before hand, it has brought us closer; I wish we could have gotten closer because of other reasons. It has caused anger, frustration, hatred, emptiness, guilt, loneliness, oh wait there have been feelings of joy, happiness, pride, there has been laughter, smiles, kisses, sticking out the tongue (if you hang out with Ian at all you get this), oh so much more. We tried hard not to let self-pity be one of those emotions. That would bring jealousy of others, who would that help, as I said we tried for that to not be one...but it did come in like all the other emotions. Feelings we may not of even been aware of or been able to explain as well as things we had to decide if we were going to explain to Ian and Becca. 

Many things have become routine for us, Ian does not have much more of his physical ability to loose, VRK1 has taken it. We watch others do things with their sons or brothers that we will never be able to do with ours as VRK1 has taken that from us. But we do have many good things... love, laughter, outings for dinner, outings to the mall, watching movies as a family, seeing the smiles on each others faces. 

The past year has been one of many ups and downs, many challenging decisions to be made. Who knows what lays ahead in the next year...

Tuesday, June 25, 2013

A Different Kind of Summer

So far summer has been good. It is a different kind of summer for us. Becca is back at Milldale for 7 weeks. She will spend a week in Flordia with some of her cousins at Nana & Pop-Pop's. In addition, she is doing a few different lacrosse camps.

Ian is doing a few different camps. This week he is doing V-Linc Computer Arts Camp. He has had a wonderful 2 days so far. In a few weeks, he will start ESY (extended school year) & Camp Horizion for a few weeks before heading to Camp Simcha Special for 10 days.  Then the week before school starts the kids will do a week of Lego Camp.

This is the 1st summer since the kids were in kindergarten that they have not been at Camp Milldale together. A hard decision for us to make but we know it was the right one for our family.

We are looking forward to our different kind of summer.

Friday, June 14, 2013

THANK YOU!!!

As you all know this year was very challenging for us, not knowing from day to day what where our family was heading or what was going to happen. In one way or another you are all there for us, a part of our village. Thank you for being there when we could not be to help keep our family as grounded as we could. With out realizing it you all put your feelings and fears aside and helped us thru ours without realizing it, thank you.

Today, we sent Becca and Ian to school as 3rd and 4th graders and they come home to us as 4th and 5th graders. This year was a wonderful learning experience for us in many different ways. We are still in our infancy stages of our current normal...thank you for supporting us thru this...seeing the kids come home from school and their activities, sometimes in tears but most of the time with smiles on their faces is a testament to all you have done and given us.

From our families...immediate to extended, to the staff at Chatsworth, to the families of Chatsworth, to the kids at Chatsworth, to the families and girls at Girl Scouts, families and boys at Cub Scouts, families and girls at lacrosse, our co-workers...THANK YOU..... THANK YOU....THANK YOU....and this does not seem like enough.....

Marci and Brian....Becca and Ian as well.....XO

Sunday, June 2, 2013

My Girl...

All of my posts are about life for Ian or with Ian...what about his beautiful twin sister, Becca. She does not have the "normal" life one would consider a 10-year-old having. This thought has crossed my mind many times as I have watched all the changes my family has encounted over the years. Just this weekend, we received Ian's monthly supplies. His nurse and I were sorting thru the boxes and both kids wanted to help. Becca started pulling things out...the filters for the cough assist and vent, the water traps,the yankauers; she said as she handed them to us. It amazed me that she knew what everything was but why did it? In one way or another medical supplies have been a part of her "normal" life. She has learned how to set up his feed thru his feeding pump, she has learned how to give him medicine thru his g-tube, how to get the water out of his vent tube and empty the water trap. All of this because she had asked. Some things we do ask of her, what did he say, can you change the channel for him, clean up your room, put away your books (wait that is what other parents say as well).

She is my superhero just as much as he is....how does she handle all of the things she does? How will she continue to handle all that lies in front of her. I don't know the answers to those questions or many others but I do know she is our little girl who continues to amaze us in all she does. The strength she has shown over the years has blown us away yet you can still see the fear in her eyes as our family continues to face all we do.  I do know we will continue to give her all we can and watch her continue to grow into the wonderful person she will become.

Monday, May 20, 2013

Faces of SMA

Enjoy, education is priceless...

http://youtu.be/CH7uKLe3Fsk



If you were paying close attention to the latest Faces of SMA video you may have noticed something different. We have updated the information on the types of SMA; going from 6 types to 7. Meet Ian. Ian is the reason we have learned about VRK1 and we want to educate you all about this extremely rare type of SMA. Ian is the fourth person worldwide to be diagnosed with the VRK1 variation of SMA. Knowledge is power and it just takes courage to educate people. Learn more about VRK1 by visiting http://ghr.nlm.nih.gov/gene/VRK1

Saturday, May 18, 2013

The World

On Friday, I went with Ian on a field trip to DC. Stops included The Capitol, Martin Luther King Memorial, Lincoln Memorial and finally the Air and Space Museum. After seeing some of the sites at tne Museum, the store had to be visited. With the help from Stephanie, our wonderful "sitter", Ian picked out a model helicopter for himself. Then it was time to find something for Becca. A paper weight with a globe in it was the perfect gift ..



while showing one of Ian's teachers his purchases, she said "Ian you are giving Becca the world"..what a perfect gift without even knowing.
THE WORLD is what we all give each other.

Saturday, May 11, 2013

10 Years Later

It is hard to believe that 10 years ago on Mother's Day Weekend....Becca came home. Wait a minute, so did Ian. When we left the hospital with Becca on Saturday, May 10, 2003 we were told we would have another week before Ian was ready for discharge. Imagine our surprise when the phone rang on Sunday, May 11, 2003 and we were told he was ready for discharge. They could probably keep him another night but really he was ready. As Brian said back then....how do you tell them to keep your child?

So 10 years later....Happy Homecoming Weekend our sweet baby girl and boy.

Thank you for making everyday wonderful.

I may not be perfect but when I look at my children I know that I got something in my life perfectly right. -Unknown

Beginning Of May

May has started off just as busy as April finished. Ian had many doctors appointments, all of which went very well.

The doctors at the pain clinic were happy to see him out of the PICU. They continued with the plan they started when he was in patient by starting to taper some if his meds. The patches we use on his feet at night will continue as they are a hit. And if at anytime during the taper his pain increases we stop.

His appointment with the muscle clinic also went well. They too were happy to see him in clinc and not in the PICU. The occupational therapists checked him out and did a small assessment for some changes to his wheelchair in addition to a possible new one. Now we wait to go back to the wheelchair clinic and try somethings out.

One step at a time.....

Friday, April 19, 2013

Double Digits - Happy Birthday

It is hard to believe that our double trouble will hit double digits on Monday. The past 10 years have been filled with joy, happiness, tears, sadness, raw emotions... some of which I am not even sure we are aware we are having.

A few weeks ago, thanks to Casey Cares Foundation, we went to see the Ringling Bros. and Barnum Bailey Circus "The Dragons". The characteristics of the dragons are strength, courage, wisdom and heart. Sitting next Becca and watching Brian and Ian in the accessible seats in front of us, looking up at the signs with the words running across them....I thought...that is my family.

  • Strength: the quality or state of being strong; a strong attribute or inherent asset.
  • Courage: mental or moral strength to venture, persevere, and withstand danger, fear, or difficulty.
  • Wisdom: knowledge, insight, judgment. generally accepted belief.
  • Heart: personality, generous disposition; compassion, love affection, courage; one's innermost character, feelings, or inclinations.

We have all of those characteristics plus some....when you see us out, we usually have smiles on our faces and make things seem easy. Even in the house, most of the time, that is still the case...but we do have our times when the smiles are not on our faces and things are not easy. We may not always do things the way others would do them or handle them the best way....we yell at each other, get frustrated with each other and sometimes say things we later regret and don’t mean. We try to handle everything the best way we can...again not everyone is going to think the way we are handling things is right or the way they would do it...but it is our way.

April 22, 2003 at 12:29pm and 12:30pm, our lives were changed forever, we joined all the others in the world who are blessed to be called parents...mommy/daddy, mama/dada, mom/dad...does it matter what you are called.  On that day, our journey began. As with anything in life, Brian and I had no idea what our journey was going to become, not only to us but to many others. Both kids have endured many things most don't in their lives, as parents we want to protect our kids; only want them to experience the happy and good...but we all know that is not possible, part of life, growing and learning is to experience all things. We can't put them in a bubble so nothing happens to them, I am sure all of us would be doing that if we could. Knowing this, we have taken each day as it comes with each part of our journey as it comes....Becca and Ian have brought much joy to us, they shine in everything they do, they love each other more then they will admit (especially to their friends) and are each others best friends. We celebrate them today and every day...








Thursday, April 18, 2013

Back To School

Today was an amazing day. Everyone was happy and excited to see Ian, just as happy as he was to see everyone at school. We played noises with all of his equipment so the other kids knew what was an ok noise. Ian is only back in school for 1/2 days, he will stay thru lunch and then come home. We are hoping he will continue to get home and hospital for 4 hours a week to cover some of the subjects he will not be getting in school.


 

 
We are looking forward to a good 2nd day, good weekend and a great week to come.

Wednesday, April 17, 2013

All Good Things...Back to School

It has been a while, things have been busy and hectic with all good things. We are getting settled in with the nurses, Brian and I are pretty much back to work, school is going well for Becca as well as lacrosse season has started and she is doing well with that. Most of Ian's buddies have been coming back over to visit and play...and he loves that.

And as of tomorrow, Ian will be back in school....yes you all read that correct. The past week I have been working with everyone involved in Ian's care, especially school, to get things ready for him to go back...and the smiles on his face when we talk about school and seeing his friends are priceless. So all that is left now is for lunches to be packed, showers to be taken, clothes to be picked out....and everyone to get a good night sleep. 

Ian and Becca have a great day tomorrow being in school together again. You are both loved and shine in everything you do.

Thursday, March 28, 2013

Quick Update

For the past few days, I have wanted to post but things have been busy with us trying to adjust to a "new normal"; at least trying to figure out what that will be. It has been hard with the holidays and the spring break for the kids. Brian and I along with the nurses, doctors and respiratory therapists have been working hard to figure out the amount of humidity Ian needs thru his vent when using the heater and the HME; this is challenging as it seems to be different depending on where he is as well as the humidity in the air.

Seders have come and gone....everyone came to us which made it easier for Ian and getting his treatments. This was not an easy task for others....so thank you.

Last night we had our first major outing as a family thanks to Casey Cares Foundation. We went to see the circus; the smiles and laughter from the kids was priceless. Check out the kids with the ring master.
The theme of the circus was the dragon along with its characteristics of "strength", "courage", "wisdom", and "heart". It is amazing how those characteristics are so fitting of many things in our lives.

Have a good night all.

Friday, March 15, 2013

Home Again

WE ARE ALL HOME AGAIN UNDER ONE ROOM....SLEEPING...WELL AT LEAST THE KIDS ARE. EVERYONE SLEEP WELL, BRIAN AND I ARE GOING TO TRY OUR BEST TO DO THAT TONIGHT.

Thursday, March 14, 2013

PICU Day 1

Yesterday was a rough day for many different reasons beyond ending up in the ER....

Ian was transferred poorly yesterday and  as a result his right leg is broken. Ian is in a immobilizer and will be followed by outpatient. For many reasons, Ian's bones are brittle and as we were told today he needs to be treated like "china".

Now for the ER/PICU....after dinner last night, Ian was back on the sofa and he began to desat, I had Brian come into the room and he immediately put Ian on oxygen. This did little to help him recover, so we went across the street to get our wonderful RT neighbor...thank  you Mark....he was great. Took over, began bagging Ian while assessing everything else that was going on. For many reasons, 911 was called. Once they got to the house, Mark went to get our other neighbor, Danielle to cover Becca (who had gone upstairs after seeing more then I would have liked her too, however, eventually it was going to happen and she was going to see things)...thank you Danielle. EMTs stabilized him and it was off to Hopkins. In the ER, Ian desated a few more times, however, it recovered much better then at home....Ian remained stable last night and today. He is back down to 21% oxygen...as long as he has a good night they are talking about discharge tomorrow.

Again, a very special thank you to my wonderful neighbors, Mark and Mary, Tim and Danielle, Stephanie and Ellen....we could not have gotten thru last night with out you.

Here is to my superhero having a good night and coming back home tomorrow...XO and sleep tight.

We Are Back ...

In the PICU at Hopkins.  Right now Ian is stable. We are waiting for rounds to figure out more. I will update later when I can.

Tuesday, March 12, 2013

After 10 1/2 weeks

WE ARE HOME!!!

Its has been a hectic day, but all in a good way. Ian was all smiles in the car on the ride home. He said he was happy and enjoying being in the car.

We were about 1 mile from home and Ian asked if we were almost home, yes we told him yes and just as only Ian can he said "YES"!

As I was signing discharge paperwork today, I realized it was the 12th...well thinking back 10 years ago. Ian also came home from the NICU on the 12th of the month.

Monday, March 11, 2013

According to....

Becca tomorrow is gonna be a happy day. Room is ready. Equipment all charged. Now time to get some sleep so we can get up in the morning and bring our super hero home.

Thank you all again for all the love and support over the last 10 1/2 weeks. Tomorrow our "new" normal begins.

Saturday, March 9, 2013

Working Hard

2The past few days have been extremely busy for Brian and I, we have had hours of training, been snowed in at home and the hospital (with not much snow but everything was closed), had many phone calls arranging things. The other night we had Ian's new bed along with some supplies delivered to the house, 13 boxes of medical supplies along with 3 oxygen tanks and an oxygen concentrator. (Ian is not on oxygen at this time but we have to have it in the home in case he does need to go on it.)

Ian has also had a busy few days, continuing to stay strong, had visitors, school, therapies. He also got to take a few breaks from his vent, so far about 3 times he has had 5 minute breaks from the vent. Ian has done great without it and has smiles from ear to ear but he is also happy to go back on. So take a look at what is missing...

Ian has been doing his part to come home...continuing to work hard. Having his school work come to him thru home and hospital, watching TV and movies, meeting new friends, going outside into the garden. 

The other day Ian was put onto his home vent, they like for kids to be on them for about 72 hours before coming home. Ian is doing great with it. I am sure there is more we have all done but it all seems like a blur...

Becca has been working hard as well. She has been helping to get things ready around the house as well. She has been a trooper over the last 10 weeks, going from place to place, not having Brian or I around as much as she would like (this is one major issue regarding having a sibling with special needs). Not only is Ian my hero, so is Becca. 

We have a busy week ahead....discharge meeting and homecoming!!!!!!!


Tuesday, March 5, 2013

A Visit With...

Just to make sure everyone can see... Dr. Raymond...is who the visit was with. For those of you who don't know, Dr. Raymond was Ian's neuro-geneticists since he was 2 years old. Well in December, Dr. Raymond relocated, for him this was great, for us not so great...onto the next picture before sharing the rest of the story.

The wonderful woman in this picture we met thru Dr. Raymond, she was his genetic counselor...well she has not relocated....lucky for us. After going thru the sequencing testing with us and delivering the news about the VRK1 mutation, she has stayed in our lives for many different reasons. Well today she came to visit Ian at Mt. Washington. While we were talking, Ian said that Dr. Raymond came to visit him today...this was news to all of us. So I tried to find out from him if any other adults were in the room when Dr. Raymond stopped by. Ian could not remember, that should of been our first clue that Dr. Raymond really did not come to visit. Well Leila texted Dr. Raymond to find out if maybe he was being sneaky and did not tell some people he was in town....well Dr. Raymond was not being sneaky...he indeed did not come to visit Ian but we decided the 3 of them should be together again...so DR. RAYMOND this one is for you....we miss you and hope you are doing well in your new home....to both Dr. Raymond and Lelia, thank you for coming into our lives and for never giving up until you found out what was going on with Ian....we are looking forward to our next visit with you both.