May 2016 – Thank You

We actually have a few things to share with you but this post is a huge “shout out” thank you to all of YOU. Sophie has been doing great the last few months – I’ll give a more formal health update in another post.

We just wanted to really take the time to thank you for all your encouragement, prayers and support. We have been blessed by so many of you. Sophie has been given gifts of fun and necessity, our family has been showered with gift cards, donations, encouraging words, and an overwhelming sense of love from so many of you. We are humbled by your sincere humanity and caring spirit and are thankful for it all.

Financial Update and a Note to those who were Patreons:

Some of you are familiar with our Patreon Page – and were giving through there. We wanted to give you an update on our Patreon Page. Because of God’s blessings through your support, employment opportunities, and Sophie’s reduced medical procedures we have made huge strides in our financial crisis. We no longer feel we are in need, and will be soon looking for ways that we can give back to others. We have decided to turn off our Patreon Account, and are no longer accepting payments on that website.

Videos:

I don’t have as much free time, as I’ve been working quite a bit. But Sophie still loves to make videos, so I imagine there will be some of those from time to time. We will post them on this youtube channel that you can follow here: youtube.com/user/lilsophievideos

This Blog:

Sophie will never really be done with her medical journey, as her issues will need a lifetime of observation and maintenance. I will continue to post here as things pop up. But in our world, no news is FANTASTIC NEWS!!!!

It’s been a long 6 year road so far, and we have appreciated all of you walking  beside us as we’ve navigated through this crazy terrain. Again thank you so much!!!

January 2016 – It’s Official!

  
Surgery went well. The Dr said everything is draining great and he pulled her final wire. Her birthday is coming soon so, we’re referring to her as “Sophie 6.0 – Wireless and Ready to Go”!

We can’t tell you how happy we are. Many tears of joy were shed that the 5+ year journey of the biliary stent has come to a close. Our brains can’t comprehend that we’ll be ending our 4 month surgery routine. We’re beyond thrilled! We will miss her Surgeon and the nursing staff that have been a part of “Team Sophie” all these years, so we’ll need to visit periodically. The next few weeks we’ll be watching her site as it heals and CANNOT wait until her body can be submerged in water! We’re thinking an indoor water park is in order. Any suggestions for something not too pricey?? 

Sophie has an appointment in February to follow-up on her heart. We know there will be a procedure for that down the line – but it we’re hoping that won’t be necessary for a few years. 

Right now, we are enjoying this surgery down-time and looking forward to new adventures! We are so grateful for all of you. We know so many of you have been our cheerleaders and prayer warriors through this crazy ride! There are no words to express how thankful we are for your support. 

We appreciate you so much and can’t wait to share Sophie’s triumphant water pics!

January 2016 – Surgery Friday

  
As most of you now know, Sophie was admitted to St Louis Children’s Hospital on Tuesday for IV fluids and monitoring as she has been fighting a stomach bug. She’s doing much better and is trading her lethargic state for activities such as  coloring, asking questions (“how did plants get on the earth?”), and randomly reminding us about how much she loves Mac N Cheese. 

Since things seem to be progressing, her liver team came together with a plan to take one last look at her “man-made” biliary tract. On Friday morning, Sophie will go under  anesthesia  (for the 40th time), her surgeon will inject dye into her bile pathway and monitor its flow. This will give us the final word on whether there has been any narrowing or signs of potential collapsing since removing her biliary stent tube in November. If he sees areas of concern, he will perform balloon dilation to those places and then her biliary stent tube will go back in (and we’ll try not to be disappointed). If things look good (and her labs have given us reason to hope things are good), then the “guidewire” they left in her for their emergency re-entry will be removed. 

This will mean that for the first time in 5 years Sophie will be tube/wire free! 

Please keep this situation in your thoughts and prayers – we are turning a huge corner in the quality of life and activities Sophie will be able to pursue. 

January 2016 – Starting the Year off with a Bang!

Since November, Sophie has been having chronic tummy troubles. The liver team has been keeping a close eye on things to make sure it’s not related to her bile pathway potentially collapsing. Lab numbers, and symptoms are showing us that the pathway seems to be ok, and she has been dealing with a tough stomach bug (possibly more than one, since this has lasted so long).

However, Sophie’s tummy problems have progressed recently causing her to be lethargic and refusing to eat. Our family and the liver team have found it in her best interest to be admitted to St Louis Children’s Hospital for IV fluids and observation. We’ll be here until Friday.

November 2015 – Home

Quick update:

We just got home. The doctor said things look good for now. We have been told what to watch for over the weekend. Everyone is preparing for the possibility of a surgery on Tuesday or Wednesday if we have to put the tube back in. For now, it’s time to rest, pray and wait.

November 2015 – Surgery Tomorrow – Removing the Bile Stent

I can’t believe how much time has passed! Sophie has been living a ‘fairly’ normal life. She is 5, goes to kindergarten, loves life and people and well… just about everything!!

On the medical front, she has been having routine surgeries every 4 months to change a stent tube that is acting as a bile duct path going into her liver. She has blood drawn every month to make sure her liver is happy. In July, she had a hole in her heart patched – you can see a video about that by clicking here.

What’s next? Well, she is having a routine surgery again tomorrow. We felt like we should tell you about it, as it’s a really important step for us.

Quick Recap:

When Sophie received her precious gift of a liver from her organ donor family, the primary bile duct in that liver went into shock during the transplant process and never recovered. Sophie’s liver team came up with the plan to put in a stent and basically create a new bile duct in the hopes that eventually the stent (tube) could come out leaving a new permanent pathway for the bile to flow.  For 4 years now, Sophie has lived with a tube hanging out of her liver (and body) and she has had to have it replaced surgically every 3-4 months. If this stent procedure has been successful there will be no more need for replacement tubes, ending the surgeries every 3-4 months and  Sophie could begin to live a normal life.

Imagine if you will – ‘jello’ as Sophie’s liver. The surgical team has put a ‘straw’ through this jello creating a pathway for bile to properly drain. The hope is that over time, scar tissue has developed around that ‘straw’ (stent tube) so that once the tube is removed, the scar tissue will hold the pathway open and the bile will drain as it should. However, back to our jello analogy – removing a straw from jello can result in the pathway hole still being there which is what we are hoping for!  Or the pathway could slowly collapse on itself and close up over time, putting Sophie at risk of losing her liver and once again endangering her life.

Tomorrow and the days ahead:

The liver team is unsure how all of this will play out. Of course, EVERYONE is rooting that the pathway will stay open FOREVER and all is well. Several years have passed, and it’s time for us to see if this method of treatment has worked.

We ask that you stand in prayer with us that Sophie’s bile duct will stay PERMANENTLY open, for days and years ahead. That this was the final solution to making her liver transplant a success. We are praying that this is the beginning of a new life for Sophie – that she can bathe normally, and go to pools, and waterparks and participate in all the fun stuff that she’s been restricted from all of these years.  And more importantly, finally bring an end to her life of surgeries every 3-4 months.

We thank you for all the prayers and encouragement you send our way. We are truly grateful and feel incredibly blessed.

We will update as we work through this next phase of our lives.

 

Sophie’s bile stent tube. She’s had this for over 4 years. We flush it daily with saline to help keep the bile pathway clean and open. Sophie cries when we talk about it being removed, to her this is normal and she doesn’t want it to go away. She doesn’t remember life without it and doesn’t understand what exciting adventures she is missing out on because she does have it.

 

 

Random fun pics, Sophie is becoming quite the Star Wars Fan! I wonder where she get’s that?

 

May 2014 – 3 Years Post Transplant

 

Today marks the anniversary of Sophie’s liver transplant. It’s been 3 years since a gracious family gave the gift of life during their most difficult time. It’s always hard to express the feelings this day brings, so I thought I would share the journal entry that I wrote during my morning quiet time.

 

Today’s prayer journal entry –

“Thursday May 22, 2014:

Thank you for life. Today, I’m reminded of how scared I was 3 years ago as Sophie went back with the surgeons for her liver transplant. Being told that this ‘might‘ work, but if they didn’t try it would be fatal.  Lord, you know the intricacies of her body and how complicated things are, but they are not complicated to You. You knitted her together and You guided the doctors hands and ultimately You chose for the process to work. Thank You! A hundred times, thank you.

There is a very special family that will always feel a sense of loss during this time. Lord, I pray that in time you can turn their morning into dancing. Only You can bring healing, peace, and comfort to their souls. God bless this precious family. Let them know that you bring comfort. That some how, some way, they can feel honored that their sacrifice still lives on and plays happily in my front yard. What a miraculous gift. What a precious blessing. What a divine connection. I am forever grateful. God bless our donor family. ”

September 2013 – What’s New?

Nothing!!  Yay!  So I haven’t been up to date. And I’ve had some people ask what’s happening. I apologize for falling behind. But we have had a nice quiet summer. No changes. No updates.

Lil’Sophie (who’s not so little these days), had her typical-every-4-month bile stent change surgery a couple of weeks ago. All went smoothly as planned. Hopefully, she won’t need anything again until January.  She has some follow-up appointments coming up in October.

Other than that, she’s back to school for half day mornings and loving her teacher and friends….

2nd Year Transplant Anniversary Cake

2 candles for 2 additional years of life we’ve been given

Memorial Candle

Memorial Candle lit to honor Sophie’s donor

Annual pic with headphones for 4th of July

Loving 3D movies!!

Will I be as tall as you?

1st ‘Real’ Concert – Goo Goo Dolls & Matchbox Twenty

Sprinkler Fun

Carousel – never get tired of them

Whoohooo! Camel Ride!

1st Baseball game! Go Cards!

Spiderman, Spiderman, Does whatever a spider can. Spins a web, any size…

Meeeeooooowww!

Don’t worry I’m a doctor….

March 2013 – Biopsy Results…Well kinda

So it’s been a while since the biopsy and it’s taken almost this long for the team to come to a conclusion. The conclusion IS  – confusion. Basically, they’ve decided there was not enough data to tell what’s happening in her liver. The biopsy tissue was taken close to her stent tube. It’s clear her body is slightly angry with her stent tube at the moment, so that may have provided false information. The team has decided that we will continue as ‘normal’. I will take her early April for routine labs. They will closely monitor the liver numbers. If they are still elevated at the next scheduled stent change, they will redo the biopsy in a different location for a more accurate reading. So until then, we’ve all decided she’s not experiencing liver rejection (her labs this week showed her numbers beginning to trend back down). Thank you Jesus!  🙂

Regardless of what the numbers say, we’re just happy that she looks and acts this healthy.

February 2013 – Home from Biopsy

Sophie did well during her procedure. The interventional radiologist replaced her bile stent tube with a fresh one and took a liver sample to send off for tests. We will know the biopsy results possibly Friday or early next week.

Sophie woke up from anesthesia “fit to be tied” but eventually calmed down once she was allowed to have milk. The little trooper had to lay still in bed for 6hrs. We were discharged late last night and slept in our own beds! (Yay! What a blessing.)

Today Lil’Sophie has been climbing and playing like nothing ever happened. We are so thankful for a smooth procedure. Now we just wait for results. 🙂