Wednesday, December 18, 2013
Saturday, November 30, 2013
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
Friday, November 22, 2013
Tuesday, November 19, 2013
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.
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
Sunday, November 17, 2013
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.
Saturday, November 16, 2013
Friday, November 15, 2013
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
Wednesday, November 13, 2013
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
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
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.
Sunday, November 10, 2013
Saturday, November 2, 2013
Monday, October 28, 2013
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.
Wednesday, October 23, 2013
Mutations in VRK1 Associated With Complex Motor and Sensory Axonal Neuropathy Plus Microcephaly
Monday, October 21, 2013
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
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
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
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
Friday, October 4, 2013
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
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
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
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
Friday, September 6, 2013
- 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.
Tuesday, September 3, 2013
Tuesday, August 27, 2013
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
|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.|
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
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
Sunday, July 28, 2013
- 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.
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
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
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.
Wednesday, July 3, 2013
Tuesday, June 25, 2013
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
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
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
Saturday, May 18, 2013
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
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
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
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
Wednesday, April 17, 2013
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
Friday, March 15, 2013
Thursday, March 14, 2013
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.
Tuesday, March 12, 2013
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
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
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...
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!!!!!!!