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

Tomorrow's the day...

Tomorrow's the day.  Surgery is a big deal for any child/parent and we are no exception.  I want to share a little of why surgery is a big deal for our sweetness.
Finn is the first case of the day tomorrow morning which means for us a 5 am arrival time.  There are a lot of reasons why it is so important that Finn go first tomorrow.
  Fasting is something that Finn cannot do, he is fed through his gtube 24/7 because even a few hours without feeding cause his body to start to go into acidosis and that causes ALOT of trouble (think marathon runner at the end of a race) and for surgery they want him to have nothing in his belly so we get IV fluids of sugar before hand to head that off.
  Finn has a reaction to anesthesia called Malignant Hyperthermia (MH).  This is a condition where his body temperature rapidly rises after recieving general anesthesia and severe muscle cramping.  Finn gets monitored very closely after any procedure and has to have all of the "gas lines" completely cleared before he gets any sedation.  (in anesthesiologist language PAIN IN THE ASS if you aren't the first kid of the day)
   Stress in general is not good for our sweet boy that means pain, heat, cold and on and on and on.  His sweet body cannot handle it, so of course surgery and removal of things makes for a sticky situation.  We do our best to avoid all of this but reality is stress is apart of life, it happens.  All we can do is prepare his body and be vigilant to react when he starts getting into trouble.
  The hardest part of all of this is that while most of the anesthesiologists know about mitochondrial disease the don't KNOW mitochondrial disease.   I am Finn's mommy not his doctor but there are a lot of times that I feel like I am educating the people who have my son's life in there hands and that scares the shit out of me.  This is why we walk, why I raise money for the UMDF, why spreading awareness is SO important to me.  I want a doctor here in Charlotte that KNOWS this disease, I don't want to have to have a doctor hundreds of miles away caring for my baby.

  So tomorrow please pray for us, for our sweet boy, for the doctors AND for a cure.

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Published with Blogger-droid v1.6.5

Published with Blogger-droid v1.6.5

I know it has been awhile...

It has been so long since I have posted and so much has gone on I have no idea where to start!!  I want to start blogging and sharing the good along with the hard times and right now the good is overflowing!   This winter we were able to stay out of the hospital due to some realizations about Finn's non existant immune system and his need for antibiotic coverage, so he stayed on Omnicef all winter and was started on pulmacort and we kept him completely away from any potential infects.  We have found an amazing CAP worker (a NURSE!) who has been such a blessing.  We have needed help with Finn for a while now and Essence is Gods answer to our prayers!  She fits right in and the kids love her!! 

Finn has become a big brother since I last posted  Liam Matthew joined our family and has become what I have deemed the beginning of a redemptive period in our lives, he has brought some beautiful times into our family.  God has really blessed us!  One of the sweetest things is bathing all three of them at once and watching Cadence and Finn wash Liam and love on him.


We made some of our yearly check up appointments for Finn these past two weeks to prepare for surgery.  We headed to the ENT because Finn has lost all of the hearing in his left ear, after examing Finn and retesting him the doctor stated that he thinks Finn needs his adenoids and tonsils out as well as permanent ear tubes because he has absecess on his adenoids he needs those out because they are 3 times normal size (great thing to tell an anxious mom by the way!)
Cardiology was a breeze!  Finn's dyautonomia is changing from the point of he isn't always symptomatic when his blood pressure is to high or to low,  his blood sugars have started to be ALL over the place but without symptoms.  And his heart looked AMAZING!!  (Can I put a plug in her for the great Dr Greene!!)
Neurology was not so encouraging.  Finn has been having some vision changes but his eye exam was okay.  Also he has been complaining of his head hurting, Dayal (or a-hole as Finn calls her) thinks that they are migraines and now we are faced with what to do with all of the options.

There are some days where aside from Finn having nursing that we forget that there is anything wrong with him and then WHAM, reality smacks us in the face!

 Finn with be having surgery on the 11th of October and we really really covet your prayers for him.  Every time he has to be sedated or under go stress the risk of something happening to my sweetness increases.  I am so anxious about surgery about sedation but I have full confidence in these doctors.

This week Andrew got a new job!!!  His company sent he and I up to Chicago for training and it has been the best week that we have had alone in a long time!

The Energy for life walkathon is in 2 weeks and if you haven't joined our team we would LOVE to have you join us!  I will post a link!     http://www.energyforlifewalk.org/c.aiILIZNMKkK0F/b.6700253/k.8E5D/Join_a_Team/siteapps/teampage/ShowPage.aspx?c=aiILIZNMKkK0F&b=6700253&sid=ktJ1IcOPIeLUIbOKKoH


Will continue to update as we continue on this amazing journey!!

Look at that expression!!

One of the many facial expressions of Finn, he is the master of them! He is loving the water this year, such a change from last year!

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Our new "cool tool"

We just received funding through early intervention for this AMAZING app for our Ipad that Finn can use to help him communicate!!  It is called proloquo2go ( http://www.proloquo2go.com/).  It has the ability to accommodate his MASSIVE vocabulary and is totally programmable so that even at 2.5 years old he can use it and it can "grow" with him!  We were the first family in this area to request an ipad app so to be granted funding was really encouraging!  We are in the beginning stages of "training" Finn and fine tuning it so that it is most useful for him but already he is getting the hang of it.  The reason we decided (more that his speech therapist decided) that he needed this is because when his lactic acid levels get high he "loses" words, not cognitively but it is almost like he loses the ability to say them and that TOTALLY pisses him off.  We are hoping in time that this will help his tantruming when he is tired or not feeling well and that it will give us another tool to help "treat" what is actually going on instead of guessing what is wrong or what he wants during these times.  Technology is so cool!

a LONG overdue update on Finny

We had the frist meeting with the nursing agency that will be providing care for Finn until he no longer needs it.  I was very nervous about meeting and having to come up with everything that we do day to day.  The meeting went PERFECT and we are going to start getting a RN 20 hours a week and on top of that 60 hours of month of respite care!!  The things that this opens up are HUGE!!!  We are only at the tip of the iceburg of how wonderful this is.
Over the past few months we have started seeing infectious disease because of the "funky" skin rashes that Finn has been having and the constant upper respiratory infections that he has had since November.  They drew blood work and we found out that his IgG levels were low and that he had not made any antibodies to the vaccinations that he has recieved, this past Tuesday we had his titer levels redrawn...  another waiting game!  We are headed to Duke in a few weeks to see about starting IVIG on Finn to help his immune system, which means another doctor to explain it all to again...                 


Finny is in a very very stable state recently and we are loving seeing him as Finn and not this angry child who feels horrid and screams all the time.  I feel like we are slowly getting a handle on what he needs! He is starting to follow a rough pattern that helps us figure out when he is going to crash so we can help him early!
Our early intervention program just purchased an Ipad app for Finn to use (Porloquo2go) to help him learn to effectively communicate even when his body and brain are working shitty!!  We start training tomorrow!!

In other family news, we are 33 weeks pregnant with another boy (Liam)  This pregnancy has been just as hard as Finn's if not harder...Cadence and Finn are so excited for baby Liam's  arrival  and we so excited to meet him!!

Mitochondrial Disease

I have spent a lot of the past month or so trying to wrack my brain about what I want to blog about.  These past few months have been a so exhausting both physically and mentally.  As many of you may already know we are expecting baby Schulz number three...  (that was a HUGE shock)  The diagnosis of my sweet boy and the shock of a very unplanned pregnancy has left me in zombie land not knowing what to do next or have the energy to do the next thing.  Slowly but surely I am plodding along making "peace" with what is happening in out lives.  (I put peace in quotes because I am not sure that I will ever be at peace with Finn's diagnosis, it is not fair, not right that he should suffer.)  A lot of mito kids have earned there wings this winter, the reality of this disease is so so sad, one can only hope that a cure will be found and fast.
Finn has stayed out of the hospital which has been wonderful but his sweet life has not been without struggle.  This week we are meeting with his immunologist regarding this constant infection that he is fighting, he has been on antibiotics for over 3 months and is fine on them but off of them he starts to sink.  IVIG has been thrown on the table along with routine IV infusions to give his body what it is missing...  We have also realized that Finn is no longer gaining weight. For a kid who is on about 2500 calories a day being fed by a g tube that is not good.  We aren't sure what we are going to do next, Finn's amazing nutritionist is working with the Drs in Atlanta to figure out a plan but in the meantime we wait.

So all in all there has been a lot for us to digest and arrange and just plain ole manage at this point.  BUT we went and enjoyed the amazing weather that we have been having!!  Here are two shots of the kids feeding the ducks at Freedom park.

Also I wanted to announce that this years date for the Energy for Life walk has been set!!!  October 15th!  I am co chairing the event again this year and we would love your help, attendance and support as we fight for Finn and all of the other sweet ones who are affected with mitochondrial disease.  Last year we raised almost $80, 000 that went towards research for mitochondrial disease, this year we are really hoping to blow that number out of the water, this disease needs a cure!!