Shotels and answers...

Life has been a bit over the top lately, sorry for the lack of update!

Atlanta was the most refreshing appointment with a doctor that we have had in a long time.  Dr Kendall is a very impressive doctor who has such a passion for what she does.  She came into the appointment with notes of Finn's records (that is right she had already read them!!!), spent a lot of time really explaining what she does, mito, going over Finn's lab work that is abnormal and finally examining him.  She really picked up on a lot of the things that Finn struggles with; his mito gastrointestinal system (his largest issue), his low tone (hypotonia), the autonomic issues and all of the other things that our sweet boy struggles with.

Her basic confirmation from all of the records that we brought was that Finn has mito, which we already knew.  We came away with a plan to do what is called a buccal swab and more lab work on Finn to hopefully pin point exactly what type of mito Finn has.We ended our TWO hour appointment and headed to what Cadence dubbed the "SHOWTEL" for our first night with both kids away from home in a hotel in a long time (last time was when Finn was 8 weeks old!)  We did a connecting room and the kids shared a room and actually slept all night without incident (after we kept them up past 11!)

Some very thoughtful and gracious friends gave us a gift certificate to eat at a resutaunt for Thanksgiving so we were able to stop on our way home and have some amazing Thanksgiving lunch.  We are blessed so much by those around us, from people giving us snacks and giftcards for the way down, to people praying for us.  We had so much to be thankful for this Thanksgiving.

 We got a call yesterday from his doctors in Chapel Hill yesterday and some testing that they had done on Finn has finally revealed some results.  Finn has what is known as pyruvate dehydrogenase complex (PDC) deficiency (PDCD)  http://emedicine.medscape.com/article/948360-overview.  WE HAVE SOME ANSWERS.  Shitty answers but answers at that.  We aren't sure what all of this means for our sweet boy but to have some sort of validation that there is something that is going on with Finn that we can pinpoint is good (sort of).  There is still so much to process here...  the link about sort of gives an idea of the direction that we are headed but I will let you know was we learn more.

This weekend ended with more fun as the kids and I celebrated Andrew's 30th birthday with him at his office!  Cadence and i made Finn safe cupcakes (gluten free, wheat free, dairy free, soy free, nut free) that were very tastey!   Here is Finn enjoying his;

And here are both of this kids dreaming of freeing all of the cats at pets mart.  I love there sweet hearts.

So coming back home has been life as we know it.  Finn has continued to follow his "lets get an infection every three weeks" and his GI system is starting to suffer again.
Monday morning will bring about some more phone calls and doctor visits that will hopefully clarify what all of this means for Finn.  Finn has struggled this weekend with a high fever and tonight we have noticed a blister around what is normally his pristine g tube site.  He is already on high dose antibiotics so who knows what is causing all of this... :(

Overnighting it

sigh.  Prayers for us as we head to see Dr Kendall next week, my mind is reeling from reading his records.

"it's more like a carriage..."

Finn's new ride arrived this week!!  It is a very supportive "stroller"  that actually fits him and has bells and whistles to hold his pump and oxygen tank.  That being said it is a bit overwhelming to look at, it really can support him regardless of his needs so we bit the bullet and ordered one.  AND he is at the beginning of the limits of the stroller so it will last us a LONG time, it was getting very cramped in the baby stroller and he was getting way to hot in it.  We tried it out for the first time today going to church and it was so much easier to haul everything in it and Finn really was comfortable and well supported!  Cadence calls it his carriage and he is the prince riding in it. (hence the title "it's more like a carriage")

I wanted to also share a link with you all.  A lot of people have expressed interest in how they can help us and what we need and as a response our church has set up a website to help organize all of that.  If you are interested check it out.  We have everything pretty secure so you have to sign up and be accepted in order to see the needs.  All of this is pretty new in the works and I am beyond overwhelmed at how our Church has cared for us and for Finn as we have headed down this path.  https://www.lotsahelpinghands.com/c/628853/login/
Finn has had an amazing week, he hasn't felt this well in a long time, it is so good to see him really running around and playing.  I am even a bit hesitant as I type all of that because it seems that it could all slip away again so fast, but I am truly enjoying my sweet boy this week and all of his activity.  A huge PT milestone this week was that he climbed the stairs on his own safely!  His orthotics (smo's) really really have been helping to stabilize his ankles so that he can actually run jump and play without falling and spraining his ankles, it is a beautiful sight!
This week my goal is getting all of our paperwork together to see Dr Kendall in Atlanta.  She is a Mito doctor that Finn will be seeing for the first time the day before Thanksgiving .  The stack of "to be filled out" papers alone is massive and in addition we have to obtain all of his records to have them sent to her.  It is a daunting task but I am almost done.  Two years worth of medical history for our sweet boy is more than I imagined.  Prayers that we get some good guidance and direction from Dr Kendall and that we find a good advocate in her.

Now that we have been home a few days things seems to have settled down just a tad!  Finn is feeling great, though he is still vomiting some and not tolerating solid food well, he is tolerating his g tube feeds beautifully.  He has slept so much the past few days enjoying being back in his own bed!  It looks like we will be restarting therapies this week and jumping back on the progress train.  He and Cadence have jumped right in, it was awesome to see them playing together yesterday, side by side.  Prayers that we can continue to keep Finn healthy and that we can find a long term plan for when he gets sick again.
Yesterday 2 families from our community group at church came and helped Andrew cut up a tree (that turned into cutting another one down!!)  and working in the flower beds out front.  It is truly amazing what a few flowers will do to a yard and my soul.  I LOVE working in the flower beds and have these great visions of how our yard should look and these two families loved me in that yesterday. 
We are really blessed to have such an awesome community around us.  I hate needing.  I want to do life by myself without dependence and we are in such a place that I can't and it seems like it is becoming increasingly like that.  I hate asking for things that I know I have been able to do in the past and now there isn't enough time in the day to do them.  Somedays the reality that I am a person of need is huge and God is continually showing me that that is okay.
Tonight there is a prayer service at our church for Finn and other families who are struggling.  I am not sure where I am at being involved.  I long for Finn to be "healed" but not sure exactly what that means for Finn.  The invitation for us to participate in a service like this has opened up a place for me to struggle with what does true healing look like...  more to come!

Tabs up above...

I want to add some semi interactive tabs about so that we can also use this site as and educational place too...as we learn we pass that on to you and there are some things on mito that we want to share with you.  Not sure how else they will evolove but up for some ideas..

We are home!!

Finn was able to come home today around lunch time.  He is tolerating his g-tube feeds at his normal rate!  We noticed the normal slump after coming off of the IV fluids.  It is like the dextrose in those fluids sends his body where it needs to be.  There isn't any medical reason that we have found and most of it is all subjective information but he is a different kid with this type of glucose at a cellular level.  One day we will find an answer I am bound and determined.
As wonderful as it is being home, coming home is a bumpy ride for us.  Cadence needs a lot of structure and routine and when Finn is in the hospital that gets thrown out the window.  My sweet girl spends her day with very generous friends and family who love her but the large amount of change is hard for her.  The next few days are going to be really rough as we get back on our "routine".  A part of having Finn in the hospital is finding who can care for Cadence and then us dealing with the aftermath of what that looks like, and for my beautiful, sweet SUPER intellegent baby girl it is really hard and causes her whole world to come unglued. 
Hopefully one day we will be in a place where we have a system of sorts but that seems to get pushed under the pile of everything else.

What is next for sweet Finny...  His cool new wheelchair came in, we should be getting that this week, he needs to have a procedure done to quantify the motility in his gi track (I cant remember the test name...) so that we may be able to talk about a GJ tube.  The day before Thanksgiving we are headed to Atlanta to see Dr Kendall, the Mito specialist.  We are going hoping and praying that she will have a wealth of resources for us...

All that to say these next few days as we transition back into a home are going to be trying in many many aspects.

BUT WE ARE HOME!!!

Forward Backward dance

There is this song that they sing on Sesame Street called the Forward Backward Dance, all day today I felt like that is what we did. Step forward, step backward, step forward, step backward... and on and on and on.  Finn no longer has a fever and last night we started his tube feeds again but we are stuck at a really really low rate and having to keep him on IV fluids.  Even a small bump up of 5cc and hour is causing him to gag and cough and vomit.  I don't get it.  5cc and hour, that is such a small number that it shouldn't make that much of a difference and yet, it makes a difference, a big one.
I am thinking in some way Finn has been working to this point for a while but something that is so frustrating with some kids with Mito is that you feel like you are beating your head against a brick wall trying to get a doctor to listen to you.  There are those days that I just want to stand on the chair that I am standing on wave my arms and scream "ARE YOU LISTENING TO ME"  today was one of those days.
Oddly enough I feel this way with God sometimes.  Especially in times like these.  It is so hard when you see all of this going on and there are no clear answers to know that I am not living for here, that this earth is not my home nor is it Finn's home.  That is such a hard hard pill to swallow.  That even if Finn were perfectly healthy he would still have struggles and life would still be hard just in different ways.  And to know that God does hear me and that he is weeping that Finn is struggling.  I could go on and on.  But this place is such a lonely place, to know that God is weeping for my son and yet my son is still struggling.

Tomorrow is another day of forward backward motion, we are consulting with GI. and going to try again with the formula restart...