Monday, December 26, 2011


Christmas has come and gone once again, it seems like the time is just flying by. The kids are growing up way too fast.

Our holiday season was filled with happiness, joy, stress, and anxiety.... Just like any other family. We spent our fourth Christmas with Sam out of the hospital, happy that we are able to keep that track record going. The week leading up to Christmas I found myself just waiting for that fever to happen or for his central line site to change for the worse.

This was the first year that Sam really showed any interest in Santa, he was so excited as we stood in line to see him and went right up and started talking to him. Anybody who has ever tried to take a picture of Sam can tell you that it is almost impossible to get him to sit still and smile for a picture, but Santa has the magic touch apparently.

It is hard to imagine that at one point we never believed that Sam would make it to his first Christmas, let alone his fourth. I think because of that our holidays always have that little bit of extra anxiety. We have fought hard to get where we are and Sam is doing well. We have managed to stay employed through the recession. There are several very spectacular people out there who have continued to make it possible for us to take Sam to Boston and receive Omegaven. We have a lot to be thankful for this year.

Even with any extra anxiety that might occur because of Sam, I wouldn't trade away any of it. To see a look of pure excitement and joy on his face makes every minute of every struggle worth it.

Hopefully we can now make it through learning to ride a bike with no broken bones.

Monday, November 14, 2011

Update #2 on our MicroCLAVE issue...

I just wanted to update with information that was sent to me today from ICU Medical. Below is the string of emails from today:

From: Jason OConnor
Sent: Sunday, November 13, 2011 9:15 PM
To: Alison Burcar
Subject: Re: MicroCLAVE

Hi Alison:

Thanks for the quick response.You were very close with the suggestion about the fractures. In our case it appears to actually be slight irregularities in the very tip of Vygon extension tubing that is causing the issue.

It lookes like these small irregularities are causing the extension set to not seal properly with the split septum in the MicroCLAVE, which is then leaking fluid into the side of the clave and then out the side.

I have described all of what we learned today on our end on Sam's blog, can you please take a look at it to verify that what we are seeing makes sense and that we have given a fair despcription of the probelm we are experiencing?


From: Alison Burcar
To: Jason OConnor
Sent: Monday, November 14, 2011 12:00 PM
Subject: RE: MicroCLAVE


One might expect that there is some sort of engineering experience in the family, but then again it could just be that you are a parent like the rest of us doing the very best you can for your son.

You are right about everything in the post – and our experience also confirms issues with the Vygon product. The dynamic seal requirement on the head of the MicroCLAVE septum, is both a blessing and a curse. While the research shows that it is this feature that best inhibits bacterial transfer into the fluid path, it can also be problematic if the mating device has deficiencies. I would however, urge you to reconsider the positive pressure route, because these inherent designs that you have described so well on the blog have also been implicated as a risk factor for bloodstream infections. In fact the FDA issued a warning for these devices in 2010 and ordered all manufacturers to conduct post market surveillance studies related to the their safety (including our own CLC2000). I have attached the warning letter.

ICU Medical has actually undergone some significant design changes to help with the subject because ‘real life’ dictates our business, and our connectors are constantly subjected to outside influences which we cannot just sit back and point fingers at. For this reason, we have elected to now include a seal between the housing and the luer of the MicroCLAVE to prevent this type of leak event. I am sure that you recognize that there could be some very small amount of fluid loss inside the housing if the Vygon set were still to be used, but that type of volume is probably not a concern. This change will be in effect come January 1, 2012. We are also prototyping a slightly softer silicone that may help accommodate irregularities like in the Vygon product, but that change would have widespread design implications, so at this time I cannot make specific commitments about when that could be available.

As a manufacturer, our approach is to solve the problem and in this case we would hope that Vygon would take action, but these types of improvements do cost companies so unfortunately that is not always the case. These irregularities are a molding/manufacturing defect, and they are controllable. If you are willing to provide the part number of the Vygon product so I can match it up, I would be happy to send you a few cases of replacement tubing that we make, at no charge. I would also replace your MicroCLAVEs that were consumed through your investigation, if elect to continue with our product.Please let me know.

Alison Burcar
Vice President, Product Development

From: Jason OConnor
Sent: Monday, November 14, 2011 12:09 PM
To: Alison Burcar
Subject: Re: MicroCLAVE


I have read the FDA warning previously, and I beleive this is one of the resons that our homecare company stopped carrying our previous brand and went to the MicroCLAVE (I beleive there was a cost factor involved as well).

As I have stated previously, we love the small size and low profile of the MicroCLAVE. As we are working through solutions with out provider we had to weigh the risk of using the positive placement device vs. the risk of running into a major leak like we did - and I beleive that I would weigh on the side of the leak free connection. However, with the information that you have provided me in your most recent message we will most likely stick with the MicroCLAVE.

I appretiate that your company is taking steps to modify the design of your product the help reduce the chances of something like this occurring. I have contacted Vygon as well regarding the flaws that I see in their product, but I highly doubt that they will be as responsive as you have been to our inquiry.

The set we are using is Ref 1155.80 Lectro-Spiral 1X2 mm - L300 cm - Vol 2.8ml. We were not aware that any other company was making this type of set, and I don't remember if I ever stated anywhere that this was a coiled set that we are using. If you make a coiled set like this it will be the best news I have heard in a long time. Otherwise we would be more than willing to try out a non coiled extension set to see how it goes, especially if we find it too be leak free.

I think we only used 2 or 3 claves when we were investigating, but we won't say no if you want to throw a couple our way.Thanks again for all of your help on this! We truly appreciate the response we have received.


From: Alison Burcar
To: Jason OConnor
Sent: Monday, November 14, 2011 5:00 PM
Subject: RE: MicroCLAVE

You did actually mention spiral in your email, which causes me to stick my foot in my mouth a bit. We make the product in our Slovakia facility for EU distribution, so there is a little bit of legwork to bring into the states. But on that same note, I agree that there have been numerous requests and I can try to light a fire under it. I don’t want to recommend an uncoiled set – I have a 2 ½ year old and I hope Sam gets to act like him at least 1/10th of the time.

What I could still offer you immediately is an adapter, an anti-siphon valve to be exact, that can go at the end of your current Vygon set and then connect directly (without leaking!) to your MicroCLAVE. I’ll send you case regardless, just so you can check it out. And when I hear more specifics on when I can get a coiled set here in the states I will let you, and our distribution network here in the US know about it.

And a sincere thank you for taking the time to explain your situation in-depth. As I mentioned, we were aware of this type of leak event, but it had only occurred in a Hospital setting where any type of fluid loss can be immediately remedied because for the most part, clinicians are readily on hand to notice something like that. It paints a whole other picture for concerns with the home care patient. And while I feel we are on the right track with implementation of the seal, it helps me better understand from a broad picture our design risks and how our devices need to continually evolve. I couldn’t do that if I didn’t hear from users like you. We don’t really expect that commodity sets like the Vygon one will actually improve in the US, we actually think they are in demise as manufacturers are looking to low cost, foreign suppliers. Much of my job is to ensure that our devices can still work effectively, even when faced with irregular or deficient connections. Best of luck to you and Sam. Please let me know if I can help further.

Alison Burcar
Vice President, Product Development

On Sunday I also sent a message to Vygon, the company that manufactures the coiled extension sets that we use. So far no response from them.

Sunday, November 13, 2011

An update on our clave issue...

I just want to say that I think determining the cause of our issue on a Sunday isn't something that I really thought possible. We now know almost certainly what the issue is, and technically it isn't the clave. The MicroCLAVE is functioning properly and I do not think there is necessarily a problem with the device.

To begin with, I sent an email to ICU Medical this morning. I stated the issue I was having and asked them to read the blog post from earlier today. I received a response this afternoon:


I am very concerned that you have had this experience with our product in your home. Your detailed information and video is quite helpful, as this type of event has occurred recently in other areas and I feel very confident that I do know the cause. The 'smoking gun' in your account is how you describe that when you disconnected everything, it all looked perfect. Followed with how you attempted to try six other MicroCLAVEs in sequence, all with the same result.

As I am unfortunately not in the office today, I will send you some internal investigations that we have conducted which duplicated this problem first thing tomorrow. As an immediate measure, if you change-out your TPN delivery set (the one that connects into the MicroCLAVE), and only tighten until a friction fit is felt, I believe the leaking will stop. The problem is most likely hairline fractures in the luer of the tubing set that are almost invisible to the naked eye. These fractures allow for fluid to escape within the MicroCLAVE housing and out the area that is clearly visible in your video.

I am truly sorry for your experience, and will have more information for you tomorrow.

Alison Burcar
Vice President of Product Development

So, the advice that was given regarding the hairline fractures wasn't quite it, but it did lead me to determining why we were experiencing the leaking, and only with the MicroCLAVES and not the other claves we were using. In order to explain, you have to know a little more about these devices.

The devices that we have not had any trouble with have all been positive displacement devices. (Posiflow, MaxPlus, Ultrasite, etc... are examples) The inside of these devices looks similar to this:

When a syringe or extension set is inserted into the clave, it pushes the plunger out of the way. The inner chamber fills with fluid and then moved into the line through the connection in the bottom.

The MicroCLAVE ( and other devices like it) uses a straight fluid path. There are several benefits to this delivery system compared to the first. The straight fluid path is, however, why we are experiencing a problem with just the MicroCLAVES and not the other devices we were using. In the straight fluid path the tip of the syringe or extension set, when inserted into the clave, pushes the septum (plunger) down and open. A seal is formed between the split septum and the syringe or extension set.

Where the problem lies is that if there is any irregularity in the tip of the syringe or extension set it can't seal properly with the split septum which can cause fluid to flow through the area of the clave that is outside of the fluid path (Indicated in red).

We use an extra extension on Sam's IV to give him more length. (Vygon Lectro Spiral). These are made out of a slightly softer material than a typical extension set or syringe. After opening several packages today it appears that there is frequently small irregularities in the tip of the extension sets which is what is causing the leaks. These flaws are so minor that I wouldn't have noticed them if I wasn't looking closely. I don't feel that this is a defect, but is most definitely the cause of our issues.

So it appears that really these two products should not be used together. Hopefully now we can convince our homecare company to go back to a positive displacement device or provide a shorter extension with less irregularity that we can use in between the Vygon tubing and the MicroCLAVE.

Thank You to Alison Burcar from ICU Medical for getting back to me on a Sunday. Hopefully my research today will help someone else who may be having a similar problem.

For our Medical Friends - If you use ICU Medical Microclaves

For those of you who do not use TPN, this post probably won't make much sense to you. For our TPN friends however, this is a post you will want to read, especially if you use ICU Medical , Inc. MicroCLAVES. Here is what the package/product looks like:

About three months ago after I had put Sam to bed I went to check on him. I found him laying in a puddle of TPN and Omegaven. Panic set in as we accessed what was going on. After checking that all of his connections were secure I moved on to looking at his line hoping that we weren't going to find a bad line or a cracked hub. Everything looked perfect. We began running his PN again and to my horror I watched as fluid began to leak out of a seam in his clave.

We changed out the clave and hooked him back up and the new clave began to leak again. We went through six claves before we found one that didn't leak. The next day we sent all of the ones that had leaked back to our homecare company, they sent us replacement claves from a different lot.

About a week later one of the new claves began leaking from the same seam. Luckily I had received a box of supplies from a former TPN patient that had a different brand and style of clave and I switched out to one of those. Up until this week I have been able to secure a supply of other brands of claves.

On Friday I talked to our homecare company. I had received another different lot number if MicroCLAVES and we were going to begin using them again. Friday night there were no issues.

On Saturday we were visiting family about 45 miles from home. We hooked up Sam's TPN, put him in his car seat and drove home. When I went to pick him up and I put my hand behind him I was met with a very wet surprise. Not the first time I have been met with a wet surprise when picking Sam up, but when I pulled my hand out I could feel that it was sticky and I knew right away that he was leaking TPN from somewhere.

As we to began to undress him I found that blood had backed up into his line. There was a mix of TPN, blood, and Omegaven leaking from his clave. And he was drenched.

Luckily I had kept one spare clave of another brand just in case so we were able to get him cleaned up and get his TPN running again.

If you understand what most of this post said you are probably reading this in absolute horror. For the rest of you I will explain the concern. Sam's central line is a plastic tube that routes directly into a vein near his heart. Introducing any contaminant into this line can be deadly to him. Having clave leak the way it did opened him up to a huge infection risk. The line is meant to be a closed system. If, instead of blood backing up into the line, air had leaked in through the clave it could have potentially caused and air embolism. This could have killed him.

There is a definite problem with this product. I will be waiting to see what else our homecare company can get for us because I will never use this product ever again, even if it is redesigned. Just to show that we are not crazy, here is a video of the actual clave leaking as I flush it with saline:

Please feel free to share this info with others who might find it useful. For this type of product to fail in the way it has is completely unacceptable.

***UPDATE**** I wanted to say that in no way am I stating that this company has acted in any negligent manner. When issues like this arise, it is only fair to give the manufacturer a chance to respond and rectify a problem. I have now heard from two other people who have had similar problems with this device, but neither leaked quite as bad as the video I have posted here.

I have contacted the manufacturer directly via email and will update here on what type of response I receive from them.

***UPDATE 2**** If you are coming directly to this post, please make sure you also read the more recent post that has information regarding why we are having this problem.

Saturday, November 12, 2011

As good as it gets

Getting a good picture of Sam can be a challenge.  Getting a good picture and a smile at the same time has just about proved impossible.  So we'll take this years school picture...

I am not sure when he grew up so much, but there really isn't any trace of baby left in Sam.  He has progressed to being a little boy, something we were never sure we would get to see.

Nothing much else new to report.  Sam and I will be headed to Boston in the coming week.  We are still dealing with granulation tissue at his central line site, and we most likely will have to deal with it until there is a need to change the line and place a new one.

His vomiting fits have almost completely vanished since we introduced an oral probiotic to his daily medications.  It's more of a guessing game really, as we could just be in one of his good periods, but we will take in either way.

Sam is doing well in school and making great strides in his speech development.  We are still hoping that he will be doing well enough at the end of 4K next school year to join his brother in the Spanish bilingual program at school.  If he is not far enough along developmentally, then he will need to attend school in a regular classroom, at a different school than his brother, which will break Ryan's heart.  Ryan is already excited to be riding the bus with Sam to school a year and a half in advance.

Thanks to everyone who has made purchases at the Selling for Sam site.  Deb has been busy creating all kinds of new items for the store.  Don't forget she takes customer orders if you are looking for something you don't see there.

Thursday, September 29, 2011


Sam and I flew out to Boston today for a regularly scheduled appointment. We arrived in Boston at 11 this morning and got back home about 10 PM tonight. What a day.

The news from Boston was all good today. Sam's weight gain goal is 1 gram per day. He gained exactly 1 gram per day since our last visit to Boston in July. His labs look terrific. The last set of labs from August were all within normal range, the comment was made today that if they didn't know his history they would never guess that he has Microvillus Inclusion Disease. All of the issues we were having with liver enzymes and anemia has normalized. All in all Sam is doing well and is very healthy. His liver ultrasound from July looked good, no question regarding whether he will need to be listed for a liver transplant or not.

We discussed Sam's frequent vomiting today as well. These episodes are still occurring periodically and there really has never been a cause that could be found. After everyone got a whiff of his breath today, we are all in agreement that we are possibly dealing with bacterial overgrowth in his gut. We will be starting an antibiotic, Cipro, for 7 days to see if the symptoms improve and go from there.

We continue to keep an eye on his central line. The granulation has gotten a little larger and continues to have a pussy discharge. The site and tunnel still are not showing any sign of infection.

Boston is now managing 7 MID patients. I was told today that Sam is, by far, the healthiest of the 7.

We also discussed the possibility of moving our Omegaven study from Boston to Madison. I won't get my hopes up yet, but there are a few ideas on the table on how to make this happen so that we can travel to Boston less frequently.

Also on the Omegaven front, it sounds like things are moving closer to FDA approval. We've heard this before, so I will believe it when I see it.

This past week marked three years since the first time time that Sam came home from Boston. It marked the end of a two month stay there. For three years we have been traveling to Boston every other month. Sam has made the journey from Wisconsin to Boston 20 times.

We are grateful for everything that the team in Boston has done and continues to do for Sam, but the frequent trips have taken a toll on us. I have a lot less hair and what is left is quickly turning to all gray. Financially the trips have also taken a toll, and we have had a lot of help over the last three years to pay for those frequent visits. We can never say thank you enough to everyone that has helped in big and small ways.

Don't forget to check out The proceeds from the sales on that site help to cover expenses for travel and medical care for Sam. My wife has been hard at work to continue to add new items to the store and it sounds like several people are planning to donate items for the store in the near future.

Tuesday, September 20, 2011

Pink Fluffy Unicorns

For those of you who visit Deb or Jason on Facebook, you may have already seen this, but we wanted to share it with everyone else.  It's only Tuesday, but it has been a rough week already. Our world was very suddenly thrown into a whole mess of uncertainty.  Times like this call for more Sam videos.

Thursday, September 15, 2011

Selling For Sam

Raising Sam has been an incredible journey for us over the last three and a half years.  We have been so lucky to have an extremely supportive family and network of friends that have done so much to help out.  From organizing fundraising to financial support, we couldn't have done it without their help.

For those of you who haven't been following Sam for very long, our main struggle recently has been paying for Sam to travel from Wisconsin to Boston.  We must do this every eight weeks in order for Sam to continue to be able to be part of the Omegaven study in Boston.  (You can check out the Omegaven page on our site for more Omegaven information or see the Sam's Journey video).  Sam's benefit three years ago covered those expenses and any medical bills not paid by insurance up until last October.  Since that time we have been struggling to continue to pay for these trips.

Our latest fundraising effort, Selling For Sam, is now up and running.  You can visit our store by clicking the link on the right side of the page.  As time goes on we hope to greatly expand the selection of items available in the store. Remember to check back often as we hope to add new items frequently and many of them are likely to be one of a kind.

This is where we need your help.  Do you knit, crochet, draw, sew, sculpt, or have any type of crafty bone in your body?  If you do and you have an item or two that you can spare, consider donating it to Selling For Sam.  We have put information on how to donate items on the "How to Help" section of the site.  No matter how big or small your item may be, every little bit helps. 

Thank you to everyone for continuing to follow Sam's story and doing what you can to help him out.  We never could have accomplished everything that we have without your help.

Tuesday, September 13, 2011

Wait and see.

Our visit to Madison went fairly well,  other than the fact that the clinic was backed up over an hour and a half by the time we got there.  Sam paitently waited for his name to be called while playing nicely with the other kids that were waiting.

We were sent home to wait and see what happens.  Sam has developed granulation tissue at the exit site of his central line.  It is showing signs of a minor infection, but it has not traveled up the tunnel of his line at all, so we will continue to treat with an antibiotic cream and just keep an eye on it.  If the granulation continues to grow (to about three times the size it is now) then we will attempt to cauterize it with silver nirate.  The granulation is open, draining, and sensitive - so it is causing a little bit of discomfort for Sam.

On a brighter note, I had a much better impression of Sam's "replacement" surgeon than I did during our last meeting and am hopeful that we will be able to work together well.

I am still not ready to see summer go, so I will leave you tonight with a picture of Sam enjoying one of our many hours spent in the pool this summer.

End of a good run.

This morning Sam and I are headed to Madison to visit with a surgeon to assess Sam's central line site. Not the way I really wanted to spend the day, but, it is what it is.

From the time that Sam was about a year old until last November we were dealing with chronic infections at Sam's central line exit site. This is the spot on his chest where his tunneled line exits his body. This line goes directly into a large vein near his heart and is how all of his nutrition and hydration are delivered to him.

That period of time was extremely frustrating for us. This is Sam's life line and there are only so many places that one can be placed. It is possible to use them up - and Sam is not four years old yet - so any replacement is a serious deal.

For the last several weeks Sam's site has been irritated and draining a little. We have been treating with antibiotic cream and it was looking better. This week, however, it has become painful and looks to be infected.

Adding to the stress of that, our surgeon in Madison (who trained in Boston) moved out of state. I am sure that the replacement surgeons we have been offered are more than competent, but having someone here that knew our doctors in Boston personally was an added bonus that we will greatly miss.

I am hoping that we can come up with a plan today that will not involve replacing this line, but we have been through this before with Sam and know all to well that he tends to not recover from these types of infections and it is just a matter of time before the line will need to be replaced.

Thursday, September 8, 2011

Where has the time gone?

We have had a very busy and healthy summer. Just one short admission in early summer and we have been busy ever since.
The summer was full of fun, with trips to the waterpark, amusement park, and day trips to the campground.
In between all of that the neighborhood kids spent a lot of time at our house over the summer playing in the yard or the pool. Sam loved spending time with all of the kids.
He made some great friends and really got to socialize more than he probably ever has before.
Unfortunately, the summer had to come to an end. (Who am I kidding, we were all ready for school to start). Sam was excited to get back to school as you can see from his smile as we waited for the bus yesterday.
When the bus arrived I didn't even get so much as a goodbye and he was up the steps on his way to school. The past three and a half years have just gone by way too fast.

Tuesday, September 6, 2011

A Fresh Start

A new website is something that I have been contemplating for awhile now.  It has been a little work, and things aren't quite perfect yet, but here it is. There are a lot of new features that we weren't able to do before.  Part of our lack of posting has been the blossoming of social networking.  We frequently post updates on Sam on Facebook, but often forget to do so here.

With the new site and the addition of "Sammy's Page" on Facebook, we should now be able to do both.  In fact, you will notice that on the left side of the page you can see the feed from Sam's page on Facebook.

Something else new that has been in the works is a new fundraiser for Sam as we are still traveling to Boston every 8 weeks.  The "Selling for Sam" store link will take you to a newly created Etsy store that will soon be full of handmade items for sale to help cover Sam's travel and medical expenses.  Over the next few days I hope to get all of the items for sale (pictures on the Facebook page) moved into the store.  I will also be providing information in the next few days for how you can donate items to sell.

If you were receiving email updates from Sam's old site and would like to continue to receive them, you will need to sign up again on the right side of the page.

That's all for tonight.  I am hoping to do our first official "Sam post" tomorrow on his first day of school.

Tuesday, March 15, 2011

Taking the bad with the good

Most days I am not really sure where the last three years went.  It just doesn't seem possible that it has been three years since I stood in the NICU, being told that Sam was gravely ill and that if we hadn't have gotten him there when we did he probably wouldn't have survived the next few hours.

It is impossible to believe the days that went by as we watched Sam struggle to survive.  It would still be many weeks before we would have any answers.

The past three years have, without a doubt, been the worst three years of my life.  They have also been the best three years of my life.  With all of the heartache that Sam's has brought to our family, he has also brought great joy.  I go to sleep every night knowing that every struggle that we have gone through in the last three years has been worth the mornings that I walk into Sam's room and he looks at me with a big smile and says "morning!".

Sam had a great party to celebrate his third birthday.  It was great to see everyone that could make it to celebrate his big day.  Turning three for Sam also meant that he transitioned from the Birth to 3 program to the school districts Early Learning program.  Sam will be attending school three days a week int he afternoons.  Last week Thursday he got to spend his first day at school and we are told he did well.  Today was to be his first day riding the bus to school, unfortunately Sam had other plans.

Sam woke up this morning with a 102° F fever. Because of Sam's central line, any fever needs to be treated as a potential line infection. We have been inpatient in Appleton since this morning and today has been one hell of an adventure.

Sam didn't show any signs of anything being wrong, which is typical of Sam even when he is very sick.  The type of antibiotic that we need to use for Sam until we get results from his cultures can have a side effect called Red Man's Syndrome.  Sam has been on this antibiotic many times in his live and has never had a reaction. Until today.

Sam has had a pretty miserable day since we got about 1/2 hour into his first dose of Vancomycin.  We can help lessen the side effects by giving him Benadryl and by slowing down the rate of his infusion, but neither of those things have helped very much.  The third dose starts in a few hours and I am hoping we avoid another reaction because the episodes are downright miserable.

I will update more tomorrow once we get some test results back, for tonight I am hoping for a mostly restful night of sleep on my ultra comfortable hospital cot. (Who in the hell designs these things?)

Thursday, February 3, 2011

Another Year Another Party...

You're Invited!

Open House in Honor of Sam's 3rd Birthday

Saturday, March 5, 2011 - 12:00 PM to 6PM

Contact: if you need our address or directions.

This year we will be hosting another open house in honor of Sam's 3rd birthday and we have a lot to celebrate this year!  Cake and Ice cream served at 2:00 PM.  Non-Alcoholic beverages provided (Feel free to bring other beverages if you prefer).  Pot luck lunch/dinner, please bring your favorite dish or snack to share.

I have already received a few inquiries as to what Sam wants for his birthday.  Let me stress that Sam does not need anything for his birthday.  He is spoiled rotten by his grandparents and we could stock a small toy store with the toys in our playroom.  Last year we were able to help out a family in need by raising money for their travel expenses  and collect items for our local Children's Hospital.  This year we are asking anyone who feels that they need to shower Sam with gifts to consider making a donation to the Sam O'Connor Benefit Fund.  Sam will need to travel to Boston, MA six times this year and he could really use the help to cover some of those travel expenses.  Every little bit helps, but please do not feel obligated to make a donation.  Seeing all of our friends and families enjoying time with a healthy Sam is really gift enough.

So, what else has been going on since our last update? A lot of little things and a few big things, all good.  We have been so busy having fun, being healthy, and not being in the hospital that we simply haven't had much to update or the time to do it.  I made a new year's resolution to update the journal more regularly, but here it is February 3rd and our first post in two and a half months.

We have managed to be infection free at Sam's central line site since his replacement in November.  In fact, his site is healthier than we have seen any of his sites in the last 2 and a half years.  Either we have been really lucky or we have finally found out what the problem was and corrected it.  Against medical advice, we have thrown out the standard sterile dressing change procedures and site coverings.  After Sam had his port removed, we watched a huge gaping wound in his chest heal completely within a matter of just 10 days.  That wound was packed with wet gauze and covered with a gauze square that was taped down.  Seeing this we wondered if we could keep his site healthy in the same way.  For 8 weeks now we have been just covering Sam's insertion site with gauze and tape, letting it get air, and it has worked like a charm.  We still cover the whole thing at night with an occlusive dressing to keep stool off of the site as well.

Sam's language has continued to develop and he has a very wide vocabulary.  We still have some concerns with his language development and he has continued to do speech therapy twice a month through the birth to three program.  Which leads us to another big change.  In March, when Sam turns three, he will no longer be able to be part of that program.  Sam will be transitioning to the Early Childhood program through our school district and will be attending school a few days a week.  Although nerve wracking, I think it is going to be an excellent experience for Sam to be able to develop some social skills with kids his own age.  We have our IEP meeting on February 15th and will learn more about his evaluation and what types of services he will be receiving in school.

Other than that Sam has been just enjoying spending time as a normal healthy little boy.  He has been hitting the 10th percentile for height and weight the last few months (which is huge for him, he wasn't on the charts for a long, long time).  He is steadily gaining weight and his labs the last few months have looked great.

We are also asking for help with fundraising ideas for this year.  We will need to raise a substantial amount of money to continue Sam's trips to Boston every other month.  We do not have a lot of time on our hands, but are looking for ideas that will help us raise small amounts of money.  We are also looking for volunteers to head up their own fundraisers for Sam, but we ask that anyone who wishes to raise money for Sam to please check with us before you start planning.  We are hoping that with a few small fundraisers this year we can cover these expenses.

That is about it for tonight.  I will still try to follow my New Year's resolution and update more often - especially when we take those first day of school photos.