Wednesday, December 5, 2012

Taking a smile when you can get it.

It is almost impossible to get a decent smile from Sam captured in a picture.  The other day I had to take a picture of Sam's insertion site, and he demanded that I take a picture of his face. This was the result.

Thursday, November 15, 2012

Where did we leave off?

OK, Our indiegogo campaign is over and was very successful.  After all is said and done we raised enough money to cover about 5 full trips to Boston and Back!!  Thank You to everyone who helped share the campaign and to those who contributed.  All of the perks went out in the mail last week.  If you were expecting one and didn't receive it, please let us know!!



For those that have expressed interest in purchasing T-Shirts from the Kaukauna High School Civic Engagement Group, a link to their website can be found below:

http://samoconnor.webs.com/




Shirts are only $10 ($12 for extended sizes) + $5 for shipping and handling.

Not much else is new here.  We are all set for winter and Sam and Ryan are both anxiously awaiting snow.  Sam and I will be headed back to Boston at the end of the month so hopefully we can avoid winter weather until after our trip.

Sam has not had any medical issues since his last joint infection.  He is doing really well right now and his central line site in healthy!  He is doing well in school and loves to be there.  Today was "Donuts with Dads" so I got to spend the afternoon with Sam at school.  First was the concert which Sam actually made it through this year.  Last year the loud music was too much for him.  Then we headed back to his classroom to decorate and eat some donuts.  Since I didn't have to be back to work Sam spent the rest of the afternoon showing me around his classroom.  He is the weather helper this week, so we had to post the weather on the board.  Then he showed me all of the activity areas and how you put your name on the area you want to play in.  I was amazed at how well he follows direction at school and how well he was interacting with everyone.  Definitely great to see.


Friday, September 21, 2012

An Amazing Evening.

What an overwhelming and fantastic evening we just had.

The boys and I attended the Kaukauna Football game tonight.  Sam was an honorary captain and was out on the field for the coin toss, Spent some time in the student section, heard a crowd of students cheering his name(all wearing shirts with his name on), and received a check from the - Civic engagement group for $2500 to help fund his future trips to Boston.

Read the news story here:

http://www.wbay.com/story/19610224/2012/09/21/students-raise-money-for-child-with-rare-disorder

Thank You to everyone involved.  It was quite overwhelming, and Sam had a blast.  Ryan too, he spent some time with the girls from the group - apparently he doesn't mind the attention of a group of older women!

Sunday, September 16, 2012

Home

Sam was discharged from the hospital Friday evening and things are slowly getting back to normal.

The tube that was inserted in Sam's leg was removed on Friday morning.  His incision will continue to drain for while, but it seems to be causing him less pain with each day that goes by.  Today we did get him to stand and take a few steps, but it will still be awhile until he is back to normal.

Sam will need to remain on IV antibiotics until early October.  Where this infection came from is a mystery.  His blood culture from his line never had any bacterial growth although his peripheral culture as well as a culture from the fluid drained from his knee grew staph. This truly looks like an infection that started somewhere other than his central line.  We just don't know where.  There is a possibility that a previous infection was hiding out somewhere, or the staph was introduced through a scrape or scratch.  We may never know.

We will be meeting with an immunologist in Madison in the coming weeks as they will like to take a closer look at his immune system.  His last few infections are not following a normal course for this type of infection so they will try to determine if there is some underlying issue with his immune system at work.

Also, if you are in the Appleton area,The Kaukauna Civic Engagement group (They do community work/fundraisers to help teach students they can make a difference) from Kaukauna High School will be holing a fundraiser at the Appleton North @ Kaukauna High School Football Game on Friday, September 21st 6:30 Pregame / 7:00 Kickoff. Please join us at the game if you can!!

Wednesday, September 12, 2012

Quick Update


Sam is still in the hospital, where he will be for at least another day or two.

His Endocardiogram looked good, no signs of infection seeded on his heart valves. Very good news.

His surgery went well also. He is still in pain today and his knee is still very swollen. It might be awhile before he is up and about – back to his normal rambunctious self.  With not being able to walk it may be a little while before he returns to school as well.

Thanks for checking in on him, we will post again tomorrow on how he is doing.

Tuesday, September 11, 2012

An Unexpected Detour

Things have been going so well...

We thought Sam had come down with the flu right after we got home from camping this past weekend.  He was very tired and his stomach was upset.  He had been exposed to the summer flu by several people, including everyone who lives in out house, so it wouldn't have been a shock for him to get it.

Sunday evening he was complaining that his knee hurt.  This also made sense as I experienced a lot of stiffness and pain in my joints when I had the flu.

Monday evening he still wasn't feeling well and his knee had started to swell.  Never a good sign given his history with developing unexplained infections in both of his ankles within the last two years.

Into the ER he headed this morning with Mom.  Xray shows a ton of fluid.  Still in a lot of pain and they decided to keep him inpatient.

There is a concern regarding where the infection came from.  With no visible break down of his skin, signs point to something internal.

Tonight Sam had an endocardiogram done to look for Infective Endocarditis - basically an infection in the heart that can sometimes linger and hide even with antibiotics.  Still waiting on the results from that.

Tonight Sam is headed into surgery to have a drain placed in his knee to get rid of the infected fluid.  He will be in the hospital for a few days until the drain can be removed and then have a few more days of recovery at home.

Hopefully then we can get back to a run of good health and get him back to school  - which he has only managed to attend one day so far this year.

Wednesday, September 5, 2012

Sam in the News!

Just a quick update for those of you who don't follow on facebook...  Sam was featured on the local news today!  Here is a link to the story:

http://www.wbay.com/story/19465928/2012/09/05/fox-valley-family-works-to-save-son

Welcome!

There is a lot of new traffic on Sam's site due to his current fundraising campaign and local news coverage.  Thank you for taking the time to visit Sam's site and find out more about him.  We have been overwhelmed with the support we have received and appreciate all of the comments and contributions over the past few days!

Thursday, August 23, 2012

Long Time No Post

The lack of updates.... Ugh.

 We have been busy, busy, busy.  With summer coming to an end, I promise to update more.  I will post soon about all we have done this summer.  We have been busy living life - camping, swimming, amusement parks, etc...  so stay tuned.

We were very close to taking Sam off of Omegaven beginning in September. Things have come together though and we will be traveling to Boston again in September and keeping Sam on Omegaven. 

Unfortunately, we also found out last week that Omegaven will not be approved by the FDA this year as we had hoped. Right now it looks like it will not be approved for use in the U.S. until 2015-2016 at the earliest. This means we will need to continue to travel to Boston every 8 weeks if we want to keep Sam on Omegaven. This is what we feel is best for Sam and will continue to do this until we just aren't able to anymore. This is where we need your help.

We started a new campaign (link below) to help raise funds to cover travel expenses for the next year (or longer). If you have ever donated anything to Sam or helped with any of our fundraising efforts, please do not feel obligated to donate. We are just asking our friends and family to promote this link in any and every way you can, as often as you can, for the next 75 days. The more traffic we drive to the site, the better the chances that Sam's story will be featured on their front page which will help us raise more funds - plus there is a small token of gratitude for anyone who donates $25 or more. So, please, share this link and encourage your friends to share the link.

http://www.indiegogo.com/samoconnor

Wednesday, March 7, 2012

4 Years



I don't remember much about this day four years ago. I remember watching Sam be delivered, but not much else. I want to remember how it felt to see him come into the world, and to remember the high hopes that we had that day. Those should be the strongest emotional memories that I have about Sam, but the events over the next few days were so emotional that they have crowded out those memories.



With every year we are amazed at the progress that Sam has made and the expectations that he has shattered. It has been a long and hard journey at times but it has all been worth it to get to where we are today.


video

Four years ago I never could have believed that he would be running around the house, tormenting his brother, just being a little boy. It is quite a bit different than the journey we had imagined on this day four years ago, but also very different than the picture that would be painted for us by a doctor or two over the next several months.


We, of course, could not have done everything that we have without a great deal of help. Today I just want to say "Thank You!" to each and every person who has ever found a way to help. Whether it was emotional support, gifts, or monetary donations to help with Sam's expenses, we appreciate each and every bit of help we have received.


Most recently my family held a fundraiser for Sam at Pizza Ranch in Fond du Lac. We worked our tails off that night, but it was really a lot of fun, and it was nice to see so many people come out and support Sam.


We took the restaurant by storm and we have been told it was the busiest fundraiser that they have ever had.


Truly the night was a great success, raising enough money to help cover three round trip visits to Boston over the next 6 months.


Thank you, also, to everyone who continues to follow Sam through the website and through facebook. It means a lot to us to see so many people continue to check on him daily, even when we aren't the best at posting as often as we would like.

Tuesday, February 14, 2012

Quick Update

I just wanted to update quickly that the surgery yesterday went well. Sam and I got home at about 5:30 PM on Monday. The new line went in fine and everything looks good. I will post tonight with more details about our day in Madison.

Sunday, February 12, 2012

Time for a new line

Sam and I spent yesterday in the ER at American Family Children's. He central line site was looking worse than usual and had started to bleed at bit. He also has a suspicious lump on his chest that started draining fluid this week that may or may not be related to his current line issues.

The opinion from the surgery residents was to leave everything alone for now. They felt that the site did not look infected and the best course would be to let it be and see what happened. This is what we have been doing for the last several months, which has become increasingly frustrating as we know that it is just a matter of time before it becomes infected.

When they touched base with one of the pediatric surgeons, he was concerned that the lump on Sam's chest may be related to the site issue, so he asked us to wait in the ER until he could come into the hospital to take a look at it.

His opinion was that the line needs to come out. There is some concern that there is infection brewing deep in the tunnel of Sam's line that has made its way to an old incision site which is causing the lump and the drainage.

Although we would prefer to not pull the line, what he said made sense and in all reality the constant worry and effort to keep his site clean has been a huge drain. We agreed that it is time to replace it.

Tomorrow morning we will be headed back to Madison to have the line removed and a new one placed. As long as everything goes according to plan we should be back home a few hours after the surgery.

Sam continues to make progress with his speech and motor skill development. We recently has his annual IEP review and for now he will continue to receive speech therapy at school. We are still hopeful that by the end of next school year he will be doing well enough to be able to attend the bilingual immersion program in Kindergarten. Unfortunately, if he is not ready, he will have to attend a separate elementary school from his brother which we really wanted to avoid.

Sam and I traveled to Boston in January. Sam did really well traveling this time. He asked to sit on the plane seat instead of his car seat and it went so well that we will probably check the car seat from now on. He remained in a good mood the entire day which is amazing considering the fact that we left home before 4:00 Am and arrived back just after 10:00 PM.

The actual appointment in Boston was a complete fiasco, and I hadn't posted about it until now as I wanted to take a step back and clam down first. It hasn't happened yet. When you're making a trip like that all in one day things need to work out in a certain way in order for it to work.

For some reason when we arrived we did not have an appointment. I am not really sure what happened there as I got several versions of the story, but our appointment card from our previous trip had that date and time on it. Luckily they were able to see us, but that caused a cascade of other issues.

As we have posted before, these trips have been made more difficult by the fact that the hospital can no longer ship any Omegaven to us. This means that each time we visit we need to carry or ship 12 cases of Omegaven, in glass bottles, back to Wisconsin. For a few visits I was able to ship it back myself using labels from the hospital. That changed in November when I arrived and was told that they could no longer do that and I needed to arrange to get it home. (I got a letter in the mail the day after our visit explaining this). In November they had the 12 cases packed into 2 cartons with packing material all taped up and ready to go for me. I had no way to get it around as I can't carry two 30 pound boxes, Sam, his car seat, a backpack, and a diaper bag. I was pretty frustrated, but managed to make it to the airport somehow and checked everything.

In January I came prepared. I brought along a folding dolly that could carry with me on the plane so I could put the two cartons of Omegaven onto it and roll them to the cab, into the airport, and then to the car when we arrived in Wisconsin.

Because we didn't have an appointment, the Omegaven wasn't boxed and ready to go. It was dropped off in the exam room in several paper bags - which I had no way to carry. I asked if someone could find some boxes so I could pack it up.

When we approached the end of our appointment I asked again about finding some boxes. Amazingly, in a hospital the size of a few city blocks, there were no boxes to be found. I was told that if I wanted to box it up I would need to go buy boxes.

Sam and I packed up and headed out (in the cold) to walk over to the UPS store to buy boxes and then headed back to the hospital. When we got back we picked up our Omegaven and asked for something to pack around it and some packing tape to finish up so we could get back to the airport. The response was "we don't have any". So here I am, standing in the Fegan 3 lobby. I have two big empty boxes, 12 cases of Omegaven, Sam, car seat, back pack, diaper bag, and hand dolly - but no way to pack the Omegaven so I can get it to the airport and back to Wisconsin safely.

I rarely have anything bad to say about Children's Hospital Boston, but about this day I can honestly say that the feeling and attitude that I observed was that nobody gave a shit. As my anger grew I was seriously considering telling them where they could stick their Omegaven and just leave it there.

Luckily there was one person who actually decided to help out and helped me carry everything down to the shipping and receiving department so we could pack everything up. We (barely) made it to the airport on time to catch our flight home.

I can't wait to see what our next visit to Boston brings.


Friday, January 13, 2012

Get stuffed for Sam

If you are in the Fond du Lac, WI area, please join us on 2/29/2012 to help support Sam by getting stuffed:

1235 W Johnson St.
Fond du Lac, WI
920-292-8800
www.yourpizzaranch.com

From 5 PM to 10 PM Pizza Ranch will be donating 10% of all sales (dine-in, to-go, pick-up, and delivery) plus 100% of tips to Sam to help cover travel and medical expenses.

Sam's family and friends will be working in the restaurant washing dishes, busing tables, serving desert pizzas, and other various jobs.  Stop in for dinner, and make sure to tip big!

Spread the word to your friends and family, we want them to be SLAMMED!!