Mommy, I don't feel good...

 

His sweet tummy is not feeling so well and hasn't been treating my sweetness nicely for over a month now.  He isn't tolerating his formula which is his main source of nutrition.  Finn eats by mouth as most of you have seen but his body doesn't digest or absorb food so, he needs his formula to work.

 This past Thursday Finn started having abdominal pain that had him doubled over and in tears.  Our sweet boy hardly ever actually complains about something specifically hurting.  After all of our normal "treatments" we decided it was best to take him to the ER to rule out anything major.  All that was found was a bladder infection.

The next day brought vomiting and a slight fever, so we brought him to the peds office and they said that he had the stomach bug that has been going around.  BUT he is spilling massive amounts of ketones in his urine which means that he is burning his own fat and going through his reserves.   The vomiting has passed but we are left with a very tired boy who wants to play and wants to join in but he just doesn't have the energy. 

 HE NEEDS FORMULA!!!!

So you ask what's next?  Well we are actually having to fight to get a doctor to change his formula.  Everyone agrees that this needs to happen but everyone wants another doctor to handle it.  GI wants the metabolic doctor to change it because he doesn't know about PDCD, Metabolic wants GI to do it because that is what GI does and  Pediatrics is will to do anything to help our boy but readily admits that he has no idea what to do.

All the while our sweetness has lost more weight that we care to admit.

This very situation is one that we are unfortunately familiar with and it is familiar for more "mito families" than you would think.  It is a place where powerlessness runs free.  This is why I have poured time and energy into bringing awareness to this disease.  In my mind it is unacceptable that Finn's doctors don't know how to treat him so they pass him off.

Andrew and I are working hard to get all the doctors to work together (isn't that something we learn in childhood) to come up with a plan for Finn.  We are feeling our limitations, there are only so many hours in a day, so much money, so many phone calls we can make.

We need prayers that we can get some action.  Our sweet boy needs help, NOW.

Finn's debut!!!

Back in October we had the incredible opportunity to be filmed for a segment of  America Now and today our segment aired!!!  We are forever grateful to Casey for her magnificent work on this, such a chance that she would walk through the park on the day of our walk and see the signs that Andrew made and then that we would be chosen to do this story.

Each time I have watched this (and trust me it has been several hundreds at this point) I am brought to tears. Tears of joy that we are helping spread awareness with such a beautiful piece of work and tears of sorrow at what is my sweet boys future.

I am going to post two links, the first is for the actually link to America Now and the story that they aired and the second is the actual story that Casey put together without the LA cuts.

http://www.americanownews.com/story/16435888/mitochondrial-disease-can-shorten-a-childs-life

http://youtu.be/b0O0t2B-8DM

Finn and Cadence waiting for themselves.

"you are making me angry" :(

We have experienced a few months of bliss with our sweet boy we felt like we were on autopilot with a healthy boy who had a few attachments but Finn was coming out and blossoming, it was beautiful to watch.

There hasn't been anything to update or write about because life has been "normal"  and we have thrown ourselves into loving every minute of it.  It has been so cool to see him going to school and loving it and making friends and starting to become more independent.

About a month ago we began to notice that Finn was having a lot of increased agitation and fatigue ("old Finny").  So we started to supplement oxygen during the day to help combat the fatigue.  But we are seeing a decline.  In what is the question.

We are struggling to separate what is "i don't feel well, something hurts or I am three".  There is a lot of screaming, alot of meltdowns and a lot of sensitivity.    As these behaviors have escalated we are worn and tired and scared about what it means for our "sweetness".  Unfortunately behavior symptoms are way to vague for most doctors to respond to even in a child.  And Andrew and I are still leery about what happened with an attending at CMC.  So we feel the pull again.  There is something going on with our child who presents himself as miserable but that is the only clue that he is giving us.  We covet your prayers as we start the journey to find what we can use to help him that is also feasible.  We are trialing some new meds and struggling to find non invasive ways to help our boy
Your prayers are coveted prayers for patience and wisdom for Andrew and I, prayers for our doctors and most importantly for our sweetness to have strength to endure.

Sweetness goes to school!!

So Wednesday marked another HUGE milestone day in Finn's life, he started PRESCHOOL!!!!   He is attending the same school as Cadence and bringing his nurse with him, perfect!! 
I woke him up Wednesday morning and told him that today was the day that he started school and the biggest smile broke out across his face and he said "oh mommy, I have always wanted to do this!!"  I actually think Cadence was more excited about Finny going to "her school" than he was, she wanted to walk him to his class and even went to check on him during the day.

Finn's teacher and the director prepared a little talk about Finn and the things that make him different but Finn took care of it!  A kid asked him a question about his back pack and Finn explained it all!!!!  I am so so proud of my sweet boy!

I know this isn't a huge deal but for this mommy I never ever thought we would get here, never thought it would be possible that my boy could enjoy something so normal!!

He has his own name tag!!!

Look at how proud Cadence is!

He HAD to wear his backpack even though he had his pump bag on!!

His classroom

He came home slept FOUR hours and then went to be two hours later both days!!

Hey, guess what?? God does show up!

Life is hard.  It has been hard for a long time.  I find myself doubting whether God will ever show up, and then, He does... In just the right way, at just the right time.  Now I am not going to get all religious on you all here so you can keep reading.
This past week we realized that Liam was headed down the same path that Finn headed down three years ago, needless to say our hearts are broken.  All of the same questions went though our head as we watched our once happy baby start to struggle and suffer.  Puking and feeding intolerance and weight loss and flash backs of all that we have been through with sweet Finny.  So in a rare moment of clarity we have decided to put Liam back on breast milk, my baby boy has turned around in four short days!!!  Thanks to some AMAZING momma's we have donor milk overflowing!! (and even though we still need lots more to keep going I am certain there will be milk)
I love the idea that it takes a village to raise a child and man oh man we have an amazing village helping raise our babies!!! 

This past week Sweetness got a SUPER surprise!!  I feel like I need to give you a little history before I tell you about the surprise!  Back in October during the Energy for Life walk a sweet lady was going for her run and ran right into the event.  She was taken by the walk posters and after talking with some families decided to pitch a story for cbs' America Now.  Soooo Finny is going to be on TV!  More on that in another post.

During the interview Finn said that he wanted to be a firefighter when he grows up and a connection was made so that Finny could meet a REAL firefighter!  And HOLY MOLY!  He was SO beside himself at the chance to talk to a real firefighter and touch the gear (and way too excited he got his own!!)  I rarely see my sweet boy so excited, it was all that I could do to keep the tears from flowing as I watched the joy in my sweetness.  Check out some pictures!  (I'll add more soon, darn phone...)

















So, life is still hard.  Daily I long for the day when everything sad will be made untrue.  But...  God still shows up, he is still in our everyday mess even when I despair so much that I cannot see anything but blank.

Fall is upon us!  This is my favorite season, cool days, drier air and beauty all around.  Fall also brings with it the imminent cold and flu season.  Sweetness has already had bronchitis but after two antibiotics and a week of nebulizer treatments he barely has a cough.  We have had nursing here everyday and today was the first day since she started that Finn has actually been Sweetness and not Angry Finn.  It breaks my heart to realize how bad he must feel most days after we have days like today.  We hit up the Endocrinologist this past week.  It was a bittersweet appointment.  Finn's pancreas is failing him.  Being on continuous feeds is wearing it out and by the end of the day it is barely working. BUT without the continuous feeds his blood sugar plummets.  His "diabetes levels" A1c's are still right below normal so that is fantastic but we are looking forward to a time where he can no longer control his sugars on his own.  So, we wait, thankful it isn't as bad as we thought (blood sugars have been in the high 300s) and sad that something else is being affected by this damn disease.

 I love this picture...  Cadence wanted to be a butterfly for Halloween and Finn had to follow suit but his poor wings have lost all their strength.  Silly but it reminds me of what mitochondrial disease has done to his body.

PURE JOY

Things could not have gone better on Tuesday.  Anesthesia was very prepared for my sweet boy and things went as planned and better!!  His adenoids already had 2 more large abscesses on them so the doctor cultured them just to make sure we were covering them with the Omnicef that we are giving him.  Cultures come back tomorrow.  We were able to come home the same day and other than pain and grumpiness Finn is rebounding nicely!  I came home to find that Cadence and Liam were sick with fevers and Liam has a nasty cough.  Finnster hasn't caught it yet so we are praying that he doesn't because that would land us back in the hospital.

This Saturday is the 2nd Energy for Life Walkathon!!  This is something that I am fully invested in, I like to call my involvement my new life passion.  The UMDF is an amazing organization that is dedicated to finding a cure for Mitochondrial disease.  I invite you to join us Saturday morning at 9am at Freedom park as we walk for Finn!!  http://www.energyforlifewalk.org/c.aiILIZNMKkK0F/b.6700253/k.8E5D/Join_a_Team/siteapps/teampage/ShowPage.aspx?c=aiILIZNMKkK0F&b=6700253&sid=ktJ1IcOPIeLUIbOKKoH

and the Ipad saves the day again!!

Amazed with the gloves after some good medication!

Post surgery daze