Showing posts from February, 2013

Tuesday, February 26th

Monday was a good day for Ian. He got out of the room again and got to play with one of the volunteers. Here he is playing SORRY in the pod with the you can see by the corner...lots of equipment goes along with him.

We found out that Ian's number for Model Wavier has come up. Model Waiver is a branch of Medicaid, based on medical need not on financial need. This is something we have been working on since July. His spot opened up at just the right time, Model Wavier will be his secondary insurance and will hopefully cover what blue cross blue shield does not cover.  Yesterday, I have my meeting with the care coordinator to start all the paperwork.

Last night was my night with Ian and we watched "Mars Needs Moms". During the credits, I look over and there is Ian's head bobbing up and down...he was dancing. Loved it, priceless, when I said something to him he stopped. Both of us started laughing...those are the moments I love.

Ian's swallowing study was …

So How Are You Doing?

Over the years, especially the since January 6, 2013 many people have asked how we are doing...lately my standard answer is "I know where my head, my feet, my son, my daughter and my husband are. If you ask me about anything else, I most likely don't know." 

The past few weeks have been especially difficult for me...I am watching my son go thru things I never imagined. He has more strength and courage then I could imagine. Seeing the fear in his eyes, has been heartbreaking. There is no way for me to make it go away, in some ways no way to comfort him. I have watched some of the sadness and fear turn back into joy and spunk. 

I am watching my daughter, from a far, continuing to take each day as it comes. Tangoing with her just so I can find out what she did in school that day. Knowing she is so exhausted that anything can send her over the edge; most of those things are typical things any almost 10 year old goes thru, while others are not. In many ways, she is very well ad…

Weekend of February 23rd

This weekend was low key for Ian as far as therapies went ...he had none. We did have lots of visitors this weekend. On Saturday, Uncle David and JoAnne came to visit at the same time Nana and Pop were there.  Becca and I were there on and off during the day as we had haircuts; boy they were needed. Later that evening a special thanks to Daddy, Aunt Susan, Devin and Becca for coming back to visit because Ian was bored.

Sunday was another busy day for visitors Aunt Jill, Uncle David,  Ben and Logan came to visit and brought a wonderful Spiderman comic book. We can't wait to read it. We also got to play mean game of Sorry...did not get to finish it. When they first got there, they had a hard time finding us....why you ask - Ian got out of the room was not an easy task....lots of things to move around and hooking up portable machines, but priceless to see the smile on Ian's face as he saw the rest of the floor and the pod. Nana and Pop came back and got to hang out as wel…

Friday, February 22, 2012

So it's been a few days since I have really a been on a computer....besides for work...this week has been good, a few minor bumps in the road. Ian did some more eating, potato chips at that...and we know he loves his chips. Some mornings that was all I could get him to eat for breakfast. Tuesday evening, I did a trach change....not the most pleasant of things to do but it has to be done in order for Ian to come home....

Well on Wednesday morning, Ian's saturation level's dropped to the high 90's. They worked for a while to try to bring them back up and could not, so they increased his oxygen levels from 21% to 28%. That brought his saturation levels back up to 100%. Over the past few days they have brought his oxygen back down to 24% and will continue to watch the saturation levels. They are going to work on getting him back to 21%. Because there is a possibility Ian could be silently aspirating, they have stopped all eating and drinking by mouth until his swallowing st…

World Rare Disease Day

World Rare Disease Day is an annual observance held on the last day of February to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare and genetic diseases and their families. Please join Brian, Becca, Ian and I, as well as may other patients, families, friends, caregivers, scientists, physicians, researchers, health care providers, policy experts to raise rare and genetic diseases awareness. The Blue Denim Genes Ribbon™ is a perfect universal sign for rare and genetic disease awareness and helps unify a fractured community of thousands of small diseases who have not had a collective voice. I have Blue Denim Genes Ribbons to share...please let me know if you would like one to show your support for Ian as well as all the others (if 30 million Americans live with a rare disease {1/10 of the population} and 1/3 {10 million} of them it took 5 years or more to get a diagnosis). For…

President Weekend News

The weekend was a good one, relaxing in many ways. Friday night, I got to have a date with Ian...we spent the night watching movies and holding hands. Brian and Becca got to play Harry Potter Clue with one of our who done it...when asked they could not remember, nor could they remember where but did remember it was with the broomstick. 

Saturday and into Sunday morning, Becca and I went cabin camping with girl scouts. It was a change of pace for us...cold, lots of laughing little girls who did not want to go to sleep. During the campfire ceremony, the girls participated in a flag retirement ceremony...if you have never seen one or participated in one, it was amazing. Interesting to hear the reasons behind why and how the flag is cut before burning it. Watching the fire as the flag burns to ashes, took me to a place of solitude (at least for a little bit). As did the view...

Brian and Ian spent Saturday hanging out. Ian had speech therapy during which he got to eat half of a…

First Few Day at Mt. Washington

The 1st few days at Mt. Washington have proven to be busy ones, good but busy. Ian has done many things, some 1st and some not...

The most important thing that happened was Wednesday afternoon, Becca got to come visit. Visitors have to be 7 or older to come to Mt. no hebrew school for Becca on Wednesday, it was getting picked up by Nana at school and coming to see Ian at Mt. Washington....both kids were extremely happy to be able to see each other and catch up for a little bit. Tango chats have worked wonders while Ian was at Hopkins and for days/nights when Becca can not come to Mt. Washington. Tango chats have also worked wonders for Nana and PopPop, Nana and Pop, Aunt Susan, Uncle David, Kiki, Josh, Devin, Uncle Eric and Noah, Uncle Mike, Jen, Kirsten, Hayden, Gabe and well as some special friends.

Speech therapy has started and with that has come the ability to least a little bit. On Thursday, he had some yogurt and lemonade. On Friday, he had …

In With the New, Out With the Old

Around 9:30 this morning, my two favorite men took the ride...ambulance ride from Hopkins to Mt. Washington's official rehab and teaching have begun. Well sort of...we have had lots of visitors, most of whom we have missed while at Hopkins and we had some visitors who we had met for the first time. Some of our visitors got smiles, while others got raseberries. The plan...well we don't completely know yet but it is being worked out along with somethings we will need when we go home.


Well Ian's transfer is not happening as early in the week as we were hoping....we were told a little bit we will just have to hang out on the 10th floor for a few more days....

Weekend Update

This weekend was quiet and calm, just as we hoped. As stated in the last post, Ian was moved to the 10th floor on Friday night around 6:00...he adjusted well and was very happy to be in another room. This is a picture Brian took when they arrived to his new room.

Friday night, I went out with some was wonderful, a very nice break for "reality", a drink was had and some very good food and good company. Thank you. Saturday, Brian and I got to go out on a "date"...we went to see Beatlemania, while Nana and Pop sat with Ian...I know I don't need to say it but thank you. Becca spent the day, well actually most of the weekend with Aunt Susan, Uncle David, and kids...thank you as well. Saturday night, Brian got a break and went out as well for a few drinks...thanks...Susan...Sunday, Ian and I had a lazy morning...well more me then him but that is okay. Once we were up and ready for the day to really begin...we did his homework and then played on Webkinz W…

10th floor, he has arrived

Ian was moved to the floor about 15 minutes ago. One more step closer to home.

Holding Steady and Moving Forward

We have been holding steady for the past few days...making some good changes more so then what Brian filled everyone on...

On Tuesday we were watching the Ravens parade...Ian was waving to Ray well as the other players as they were being shown on the TV.

They have been doing sprints on his vent settings to get him back onto some stable settings. They started with just 2 hours to see how he would do and have continued to do them more and more often. They are now only increasing his settings when is sleeping. His vest was started on Tuesday but only with being on morphine about 30 minutes before hand, now he is able to use it with out the morphine...this is something he was using at home twice a day but they are using it 3x's a day.

The vent was changed over from the hospital vent to a home vent (this is a LVP), in order to get him closer to moving to the floor and then to Mt. Washington. On Wednesday, his trach was changed, he is in a non-cuffed trach which has enabled him …

What a Difference a Week Makes or Thereabouts (By Brian)

Ok maybe not necessarily a week exactly but close enough for me and for my purposes of writing another post.  If you really want to know I guess it should say...What a Difference 8 Days Make.  Again, as many, if not all, of you know on February 1, Ian had his tracheostomy surgery and it went extremely well.  So well in fact, that after what seemed like only 15 minutes to me but I know longer, the doctor comes walking out saying he's done.  I was absolutely stunned and floored but was like ok, you sure you didn't want to take more time, lol.  Anyway.  within 24 hours I swear I saw the life come back in to my little boy's eyes.  Those eyes that only 8 days ago I said "were full of sadness and despair."  It is amazing how something as complex yet as simple as removing a breathing tube (complex) and tape (simple) from Ian's face had seemed to change his entire outlook and attitude.  He was smiling, laughing and yes even mouthing words.  I was not alone with the t…

A Win

A very happy Ian...Ravens won the Super Bowl.. .

Super Bowl Sunday.. February 3, 2013

The past 2 days have been good for Ian. He is adjusting to the trach very well...his x-ray from this morning shows a totally clear left lung. Yesterday, they started to decrease the dexmedetomidine (used for sedation). They are doing this slowly due to the withdrawl, he is also doing well with this. After the surgery, they started him on morphine to help with the pain; the only time he really has needed it was when they are moving him. Over the next few days, they will start to decrease that as well...they don't want decrease that yet until he is off the dexmedetomidine. They are planning on decreasing the pressures on the vent for a little bit today and then put them back up later on today, so he won't have to work as hard when he's sleeping. 

Ian has been laughing, giving raspberries, and mouthing his needs to us. They took the ND tube out when they placed the trach and he has been getting his feeds thru his g-tube again. That is also going well.

We know we have most of th…

Ian and his 2 seconds of fame

Trach Surgery and Mickey Tube

Well it's over....Ian did a great job with the surgery...the breathing tube is out of his mouth as well as the ND tube is out....the trach and the mickey button are in. It is nice to see Ian without all the tape all over his face...we have even gotten some smiles from him in between him falling back to sleep.