The good n the bad

Today has been one of those days...
A day spent driving, a day spent at the hospital...2 appointments to tackle.

First...Hudson's echocardiogram. This was his first time. It took about 30ish min, and I sat and watched the screen as the doppler ran across his chest. I saw all kind of brilliant colors dancing about the screen, and all I could think of is what if this diseae is now weakening his heart...will he now have to add cardiologist to his list of doctors?

I was told to ask if the echo was read at my afternoon appointment with Hudson's Pulmonoligist. This is where the good news comes in...
As he is staring at his computer screen reading over the echo results, out of Dr. Pulmonarys mouth came words I rarely hear..."his heart looks perfectly healthy and normal." That was wonderful to hear...one less worry for now.
Sadly, I have learned to try and sorta brace myself or prepare for bad news and never expect to hear good news...it just is what Mito has done to my mind and heart.

The not so good...
Last night I noticed Hudon started coughing a lot. He got real bubbly at the mouth, lots of secretions, and started sounding more junky than normal. My gut...that ache inside me that says something is brewing, kicked in...today, he has sounded horrible and a ton of bubbling secretions, very lethargic. I told pulmonary doc something is brewing..even though his sats were 99 while there...I just felt Hudson is on the brink....sure enough, this evening he is running a fever. Thankfully this dr. listens to me and is proactive, so he gave a script for Augmentin. Just hoping this is not the same strain as our last illness that landed Huds in the ICU....that did not respond to Augmentin. He also had labs drawn today for his gases, and he called me this evening to tell me they looked good...that was surprising to me with him being sick I expected his gases to be off...see, always bracing for the worst.

On top of it...
I am not feeling well...Im coming down with something...I thought it was allergies, but now I am wondering if it is a cold...I think allergies was wishful thinking.

Mito Awareness....

I really wish I could dedicate more time and energy raising awareness and money to support finding a cure for so many suffering at the hands of this awful disease.
Today...it's just not in my cards to have that title of "advocate" behind my name. I know how much time and dedication it takes, and I so admire those who do all they can to raise money and awareness...if you are one who conducts fundraisers, walks, etc. I thank you from the bottom of my heart...
Being this week is awareness week in the mito arena, I am trying to spread awareness on my face book page. So many people have no idea about this disease, and if I open some eyes to the reality of this devastating disease, well I guess I have done something, a small something.

The one thing I really despise about this disease, is that it affects so many functions of a persons body. It is hard enough to deal with epileptic seizures. I can't imagine if seizures were the only symptom Hudson and I had to deal with....that is horrific in itself, and 1 devestating illness.
But there is then his muscles that are affected. If you touch Hudson he has no shoulders, they are so small and in general he is mushy.
So there you have brain and muscles, which is a lot....but there's more....
His little tummy can't process food...he has reflux, vomiting, and then back to his muscles....his neck and throat muscles are so weak, he can't swallow safely and therefore has to be g tube fed. So now we deal with brain, tummy, muscles....but wait....there's more...

Hudson's respiratory system is compromised. He has to sleep with cpap now at night because he averages 20 apnea/hypopnia episodes an hour.

And because this disease can affect the heart muscle....tomorrow Hudson will be going in for his first echocardiogram.

There are still many other areas in the body this disease can attack....did you know Mitochondrial Disease is progressive?????

Did you know this is not a rare disease, it is just not well known which is why awareness and spreading the word is so vital...
Did you know there are many adults that have it too? There are many who have it, suffer, and don't know they have mito.
Did you know they believe so many other diseases likely stem from the mitochondria dysfunctioning? Disease such as cancer, Parkinson's,autism, and many more. Do you know, like so many disease, no 2 cases of mito appears the same? It is crazy how different the faces of mitochondrial disease are!

We NEED a cure....for Hudson, for all of Hudson's mito friends, for all those who have already lost their battle...we need a CURE!!!!!

My full time life

Wow...it has been a full week!

This week we pretty much got everything going in full swing....

First full week (week#3)back at school for the kids...I can't believe the amount of homework already. It's what I expected, but Hailey being in 2nd grade....HUGE jump in the load from first grade. I remember it all from when Hunter was there...it is just having 2 kids with full time homework and single parenting + all things Hudson...it's a lot for one person...but that's just the beginning...
This week I went back to work...which is nice because I miss that money, and the kids are pretty sweet too...I think of my job more as a opportunity to minister to children and their moms...I get to talk about Jesus, pray with them, and also give moms a few hours to themselves while they know their babies are in loving hands...a blessing for all!

I started back at community group this week with my church. I did community group after I had just had Hudson, and 4 months later when all hell broke loose, our attendance was impossible. After the realization of our new normal had settled,I did a friends churches bible study, and home based.
Over the summer, I had really felt that nudge to contact a dear friend whoose husband runs community group from 4 years ago. She met me for lunch and I laid my heart out to her...she knows much of the last four years and she is a strong Christian woman who I felt could give me solid counsel. I knew God was orchestrating this needed meeting, and I knew I was being called...I need to be around others who can be real...with their faith, life's struggles...who are willing to call me out on my sin and help me deepen my faith and walk together through life. Thursday night was my first night back...it was like being home. I went alone, knew my friend and her husband and no one else....it was a whole new group, but they were so welcoming. We ate dinner together and then spent time going through questions regarding the sermon, real life stuff....lots of emotions, lots of honesty, people coming forward with their sinful nature....people who ultimately love and desire Jesus. Great stuff for me right now. I walked away knowing this is where I need to be...in community.

Hunter is now back at Scouts (anyone want to buy popcorn?) yep...fundraisers are in full swing as well as a upcoming family campout.
Hunter started guitar lessons this week as well. He has been wanting lessons since he got his guitar for Christmas and is super excited to learn how to play...my mom got him lessons for his birthday.
On a whim, Hailey decided she wanted to play the violin...I just so happened to be talking to her music teacher before school about Haileys desire and she had told me the next day she was starting group lessons! What are the chances? With small ears overhearing this she begged me...how could I say no? Especially after I received the following email from her teachers this week;



Mrs. Austin,
This is just a quick note to let you know how much Mrs. Tarr and I have enjoyed having Hailey in class thus far. We love her sweet spirit and willingness to help others. Hailey seems to have a deep understanding of caring for others. This characteristic is beautiful to see.
 
Hailey is also very diligent about finishing her school work. Her work is completely on time and done so neatly. Mrs. Tarr and I also appreciate this so much.
 
Thank you for your effort and willingness to help in the classroom.
 



So I felt she deserves this violin opportunity! I am very proud of her and who she is.

So....yes, I almost forgot...this week I also started my weekly volunteering in the kids classrooms.

Then there is my sweetie pie Hudson.
This week we have implemented our new schedules for vision therapy, speech therapy, p.t., o.t., and pre- school teacher. Each of them taking about an hour once a week in our home.
Not to mention the P.T. Clinc I take him to weekly as well.

On top of all this, I have managed to get my behind up to the YMCA daily since the kids have been back in school. It has worked really well so far with their daycare...the time of day I get their it is usually pretty empty, and they usually read Hudson books if he is awake. Most of the workers are aware of Hudson and our situation, so I appreciate not having to tell about him over and over again.
I have definitely had to " let go" of doing daily housework with my new schedule. I hate how behind I feel in this department, but I feel going to the gym is a priority.
I need something for me!
Saturdays are filled at the Y....Hunter has wall climbing and swimming with a buddy, and Hailey has swimming, sports class, and Tae Kwon Do...mom works out! :)
Sunday of course....church, and making time for friends and family, and then get ready to start the week all over again!

So...with my last post I whined about lack of sleep, and how we were implementing a new med for sleep. It has helped. It doesn't knock him out, but once he falls asleep he sleeps. He is also not as agitated with the mask. I emailed his pulmonary doc, and told him all the stuff that's been going on. He emailed me right away...he fit me in next week and we will weigh the pros and cons, and I will bring the mask to our appointment.

I am grateful I have been sleeping more...I don't think I could keep up with this crazy life of mine on no sleep!
 

A sleepy day for Hudson... Asleep listening to The Hungry Caterpillar being read to him on my iPad!
( thanks D for the heads up on the free app)

Another one of Hudson's "sleepy days" when has he ever slept in a stander!?!

September 11, 2001

I thought this was a great article (below)in the Washington Post, in light of the upcoming anniversary of 9/11/01.
It just so happens to be written by Pastor Mark Driscoll,of Mars Hill Church here in Seartle where I call my church home.
It is such a haunting memory and so tragic...unreal it has been 10 years.
Please read the article if you felt lead to do so.

On a Hudson note...
I have slept 2 nights in a row. Tonight will be the true test as he slept a lot today, and hasn't gone past 2 days of sleeping through the night in a month.

Will he do it???? Praying it's a big fat YES....we shall see! :)








The horror of death and the hope of resurrection

Horrific doesn’t begin to describe 9/11. Like most of the world, I spent that day glued to the TV in disbelief, watching the footage of the planes hitting the towers, causing those gigantic fireballs, melting the iron beams, and triggering the eventual collapse of the once stalwart buildings.
I watched stunned as people jumped hundreds of stories to their death. Others stood out windows, trapped, begging desperately for saving. It was a dark day, and a surreal one. All captured on television for the world to see.
It’s been a decade since those horrible attacks. In looking back, it’s appropriate to reflect and ask, “Why is 9/11 seared into our brains? Why is it such a cultural force? What does the day tell us about ourselves and God?”
9/11 reminds us that life is fragile and that ultimately we’ll all die. Amid the troubles and worries of everyday life, we often ignore this fact. But times of great tragedy serve to remind us that life is both temporal and fragile. Death comes for us all.
And in those moments, we wonder, what will happen when we die?
People have opinions. Some believe in reincarnation. Others believe that nothing happens. Still others believe that there’s some sort of afterlife that you go to if you’re good. For the Christian, we believe that there is an eventual bodily resurrection of the dead.
The question becomes, “What and who will you trust to teach about what’s next?”
Christianity is unique in that it provides for the hope of resurrection and eternal life for the body. Often, the cultural concept of life after death is an inane, cartoonish picture of people becoming chubby angels, wearing diapers, and plucking harps while sitting on clouds with wings far too small to take us anywhere interesting. The biblical concept of resurrection, however, is this world recycled, renewed, and redeemed without sin and the effects of sin, such as death, injustice, evil, hatred, pollution, and suffering-the world as God originally made it. And, the world as God will remake it in his time.
According to the hope-filled vision of the Bible, life after death culminates in a resurrection of the physical body-not just the ongoing existence of the immaterial soul in some other realm. And our bodies are made new, without frailty or mortality, “So is it with the resurrection of the dead. What is sown is perishable; what is raised is imperishable” (1 Corinthians 15:42).
This is in stark contrast to most of the historical ideas about life after death, which view the body as a prison and the soul as immortal. Plato drives this point home: “The soul, being immortal, existed before the body, and will continue to exist after the body is gone.”
Since 9/11, there’s been a great resurgence in spirituality. I often meet people who are self-described as “spiritual.” 9/11 has caused many to seek some sort of meaning and grounding in the face of death.
Yet, the question persists, who will you trust to teach you about life after death in general, and guide you through your own death in particular? Jesus alone has died and returned from death. Jesus alone knows what awaits us on the other side of death. Jesus alone has defeated death, and declared so saying, “I am the resurrection and the life. Whoever believes in me, though he die, yet shall live, and everyone who lives and believes in me shall never die” (John 11:25-26).
The central event of the Bible and human history is the death of Jesus on the cross for the sins of the world and his resurrection in victory over death. It is through sin that death entered the world. And it is through Jesus’ death that sin and death are defeated, those who are far from God are brought near to God, and those facing death can do so knowing that Jesus tells the truth, that he meets us on the other side of death and that he raises the dead.
Do you know Jesus as God, forgiver of sin, and conqueror of death? The only thing worse than dying, is dying apart from Jesus, who said, “I am the way, the truth, and the life. No one comes to the Father except through me” (John 14:6). People so opposed this claim by Jesus that they killed him. Thankfully, he resurrected from death to verify his claim.
Sin is the problem. Death is the consequence. Jesus is the answer.