SEPTEMBER 20-26 IS NATIONAL MITOCHONDRIAL DISEASE AWARENESS WEEK

I have posted some video links on Hudson's blog to help raise awareness of Mitochondrial disease and it's effects. If you have time please check them out. 

 

 

Light a Light for Mito

On Wednesday, September 23rd, at 10:00 a.m. internationally, families and friends are encouraged to "Light a Light for Mito” in honor of all who are afflicted by Mito and in memory of the babies, children and adults who have lost their battle with mitochondrial disease.
Please light a candle and pray for a cure for Hudson and all of those who are affected by this disease.

 

2 Years Ago Today...

our lives would forever change, two years ago today... we heard the words "infantile spasms"  for the very first time, two years ago today... our baby boy had his first EEG, one of many more to come, two years ago today... we lost our perception of what we thought was a healthy baby boy, two years ago today... the tears of  fear of the unknown began, two years ago today... the endless days and nights of research began, two years ago today... our faith was tested beyond comprehension, two years ago today... began endless testing, poking and prodding, two years ago today...I was terrified to look at my son as his body seized, two years ago today...my worst fear became a living nightmare, two years ago today...I was afraid to face the truth and  read anything that had to do with infantile spasms, two years ago today...I did not want to imagine that Hudson would be anything but typical, two years ago today...dreams were shattered as I was told my son suffered from a "rare" seizure disorder, two years ago today...the road map of our lives took an unexpected detour, forever changing.

Two years later...I realize what a precious, special gift Hudson is, two years later...I now know I can only live for today and try not to worry about tomorrow, two years later...I realize every day with Hudson is a gift from God, two years later...I stare down every seizure that invades his tiny body and pray over him for a miracle, two years later. ..I marvel at Hudson learning to completely roll over, eating orally, making sounds at the age of 2, two years later...I am so proud to be Hudson's mommy and so proud of his accomplishments, two years later...I know I am not in control, God is, two years later...I am honored to know and  be among amazing "super mom's" who care for their own special needs baby, two years later...I realize I am being taught life lessons by the smallest teacher I know, my 2 year old, two years later...I know this is not "rare"and  that there are many families who know the face of  I.S., two years later...when I look in the eyes of my boy, I see his soul and life piercing through, two years later...I now know why my son suffers from intractable seizures, two year s later...I not only cry tears of sorrow, but tears of joy...Hudson is here, I can hold him, hug him and kiss him,  two years later...I believe Hudson is capable of anything, two years later...I know that if I don't see my son running, playing, talking here on earth, I know we will do those things together in heaven, two years later...I am a blessed mom to know and care for Hudson,and I love him for exactly who he is today.

Thinking Happy Thoughts...............................well trying anyways!

It is so easy to focus on the blahhh....you know, mind in overdrive going places it shouldn't....it is so easy to go there and stay there and get stuck! So in spite of the fact that right now Hudson is snoring in his booster chair, out cold, because he had a ugly tonic seizure, and there is a spider on steroids lingering on my wall, perched high above where it can not be reached, and the fact that all my clothes are sitting in our bath tub because a wall in our closet, with 2 shelves and 2 racks, ripped out of the wall and came tumbling down causing a huge mess, in spite of the ugliness of it all, I will try and focus on the good! TRY is the key word!

*This morning I got to be a parent helper in Hunter's and Hailey's class! I officially am the Thursday mom. Hunter's first year in Kindergarten is when it all went down with Hudson, and for the last 2 years I have not been able to commit to anything when it comes to school. Hunter had talked to me about this summer, and I knew it was very important to him and me that I be involved on a weekly basis. Trust me, there has been much guilt for not being there the last 2 years. I certainly did not want Hailey's K-year to go the way Hunter's went. So I promised the kids that I would make it work this year to be a classroom helper. So the plan is on Thursday's I drop Hudson off to my mom on our way out to school and spend one hour in Hunter's class and then an hour in Hailey's. My mom was gracious enough to commit to giving me that for the other 2 and it means the world!
* Hudson hasn't been throwing up! yeah! not sure why, but I'll take it! I am sure it will happen later today as it always seems to backfire if I announce anything good...oh crud, I did it ...started the stinkin thinking again...ok...happy thoughts......No barf, yeah! which means less laundry...huge yeah!!!!
* Going out to happy hour with my mom and friend tomorrow to celebrate a birthday...woooohoooo!
*Hudson rolled over yesterday from back to belly...that makes 3 times now! he gets so fired up that he does this to himself, he hates his tummy time!
* Today I got a card in the mail, from a friend I talk to daily and see almost daily. There is something about that.....getting a card in the mail, to let you know you are loved and being lifted in prayer.....put a :) on my face!
 
That's all I got...can't think of anymore things to be happy about....
Oh, wait I got one more.....
thanks to all who encourage me with messages of advice, support, and prayer.It helps in every way, even on the darkest days!

XOXO Deb

My Flooded Brain

Have you ever felt like your brain is flooded with overwhelming thoughts, fears, anxiety, stress, and you can't turn it off? I find myself thinking about things that I need to lay to rest, because I have no control of what lies ahead,  in the future. I have been going down the path lately, of what I am going to do when Hudson turns three? Now I know this 8 months down the road, which seems like a long time, but things will change and not for the better! Here in WA, we have a birth to 3 program through our county. All of Hudson's therapy is coordinated through this program and they pick up the co-pay for approved therapies. To date this includes O.T., P.T., Visual Therapy, Visual Developmental Dr.,  and Oral Therapy. In May,  at age 3, it all ends. Hudson is turned over to the school district...well, not really....because there is no way I am handing my baby over to a school....the county even talked about putting him on a school bus...my jaw dropped over this conversation...NO WAY! Unless God has a miracle in store for us in the next 8 months...he will not be "babysat" among typical and special needs children in a classroom...it is just ridiculous to me. So the school district will have no choice but to send a teacher to our home...not sure how that all plays out....haven't had that "talk" yet. I start wondering how we will pay for all of these therapies on our own in 8 months...I worry I will have to cut down on treatment just because of money. It is tough because we have also been denied for supplemental insurance through the state (medicaid) so we get no help. All very overwhelming to think about. Therapy is vital for Hudson, the thought of weeding out only what we can afford makes me sick.

Depakote....so far I am seeing little to no change in seizures. He only gets 1/2 a capsule in the a.m. and the other half in the p.m. I have noticed slight decrease in intensity of the tonic...he is not crying out in terror like he was a week ago, although they are still very gripping. So these capsules I open up, I have to guess about what is a half dose, and pour it into a medicine cup. These tiny beads do not dissolve well in water. I suck them up in a medicine syringe. I can't help but stare at these tiny beads floating about, and the flooded thoughts storm my brain wondering if these beads will banish the monster. So much hope in one little vial. All of the past vials have brought nothing but disappointment, hard to know so much lies in this vial of swishy little beads. Saturday will be our next increase.
More thoughts ......... I have also been thinking alot about this swine flu garbage. All you hear about is how those who are at risk with compromised immune systems...I can't fathom loosing my little one to the flu....yet I don't feel comfortable with the vaccination either....those of you who know me well, know how I feel about vaccinations....not a fan.  Hudson has never been vaccinated, I certainly don't feel comfortable giving him a vaccine that is so new...so for now I keep a Costco size pump bottle of sanitizer in my car and sanitize the heck out of me, my kids, any one who enters my car!

I am happy to say on this low dose, thus far, I am not seeing any major dopiness, or mood changes. He is moving like crazy still, which gives me hope, becasue the more active, the more muscle and strength he will build, and with more strength brings hopes that one day he will suprise us all and have purposeful movement. My daughter prays every night for Hudson, and lately she prays that he will walk. Oh, how I wish the Lord would take that whisper of prayer and tuck it into Hudson's future.
On Sunday we witnessed a huge event...Hudson rolled from his back to his belly! A first! When I first saw it I instantly ran to look at his face to see if it was a seizure that caused the movement( sad that is my first instinct)...nope....he did it all on his own....not just once but twice that day!
Another cool moment over the weekend....Hudson was under his jungle mat on his back as I was cleaning from dinner. All of us were in the kitchen and Hudson was in the living room, Hudson was making noises but we didn't give it alot of thought. Paul went in the living room and calls me in there....Hudson had scooted himself under the t.v. cabinet and only his torso was showing! Never did I think I would be joyful to see my 2 year old with his head under a cabinet....but it meant two things....the noise we were hearing was him trying to tell us he was not in a good place and he is moving..... I love the fact that he is no longer staionary...he is like a little baby trying to figure out how to get around! He is even pulling his knees in which is great for those ab muscles....hoping all this activity continues and strengthens him.
Friday I am excited to say Hudson will start therapy in the pool at our local YMCA. Our P.T. told me to take that time and go do something for myself...so I will be getting my tired booty on a machine...it will be good for me...Hunter will be in the poot too, so I only have to put Hailey in child care. This will be good for Hudson's muscles. We experimented a little this summer with one of our O.T.'s and Hudson did very well, so I think this  will be a wonderful therapy to continue and do on a weekly basis.
Hopefully sleep is in my future...it is not because of any kids keeping me up, in fact, all of my kids have been sleeping great ( I am not sure how some of you mom's out there do it....the lack of sleep thing....I get a few of those "up all night with Hudson" occasionally, but for the most part he is a great sleeper) it is my flooded brain that won't let me rest, those uncontrollable thoughts that I try to turn off at the end of the day....but waves of anxiety, fear, stress come crashing in....like tidal waves....so last night I prayed....I prayed for Hudson and for all of the sick children out there...their families...their fears and anxieties.......I prayed and the tidal wave came to a halt.......I prayed until I fell asleep.........I guess I will be doing lots of praying at bed time, when it is quiet, dark and I am left alone with my thoughts.... I will pray and  flood my brain with God's word, His peace, His love and His  comfort.