LET THE HOLIDAYS BEGIN!

HAPPY HALLOWEEN!

It is officially the start of the holiday season. My kids are pumped for today. Last night we carved our pumpkins, Hudson even got to touch pumpkin goo, he wasn't too sure about the slimy texture.
Here are our pics from last nights pumpkin carving....

 

Doing the happy dance...for several reasons

Another week down...another month down...I am exhausted, stressed, but very happy to say it is still October and ........... 


HUDSON GOT HIS STROLLER!!!!!

I seriously thought the day was never going to come, but thanks to one of Hudson's wonderful O.T.'s and her willingness to spend 21/2 hours of her time at the pharmacy (totally unplanned) with me and the tech guy who made all the adjustments, I walked away with Hudson and his stroller last night! It was a glorious feeling to see him sitting so tall, and regal in HIS new rig. I promised pics so I won't jabber on about how excited or great he looked, because I think the pictures are worth more than any blabbing I can do......

This is our BEFORE picture...he had only been in his clunker for about 10 minutes so he doesn't looks as bad as he usually does after squirming around in discomfort. Note the "flaps" behind his head...no this is not a flying stroller with wings...that is his broken canopy...lovely, huh? Lovely posture too...my poor kid...oh, and as far as the "outfit"....did I mention this was unplanned? My appointment was actually this afternoon, and when the pharmacy tech guy asked if we could be there in 10 minutes, there was no time for clothes....which is why he is mismatched and in P.J.'s and moccasins....I actually just noticed his clothes as I was posting these and figured I better explain so those of you who don't know me, don't think this is how I typically dress my kids! :)



AFTER........HIS NEW SET OF WHEELS.....

  

 What do you think? 
I love big brother taking the new car for a test drive...pretty cute!
I typically won't use the tray I don't think except for longer outings or maybe at a restaurant or something, but I am so happy to have this for Hudson. It is kind of like a buggy. The canopy also comes forward and completely encloses him in a dome, it kind of reminded me of the bubble boy. It is cool though because it is great protection from wind and rain, which is what I wanted.
Happy, happy, happy dance! 
Another moment of joy this week came on Monday.....when I took all three kids to the dentist for cleanings and check-ups. I was one super proud mommy....they all were so good, listened, sat still, let the techs do there job...and they all got a high 5 for no cavities or problems, and good brushing! I did a mini chair dance as I was holding Hudson and as she peeked in his mouth and brushed and felt around, she said his teeth look really good and healthy. There are not many "good" reports and healthy isn't a word that gets attached to Hudson very often. When it comes to Hudson........ I certainly have little to no control over much of his circumstances...but, the one thing I do daily, and have control over, is teeth brushing...so at least I know I am not failing him there...you know, it's the little things I have to celebrate...like a healthy mouth. She did say his gums were a little swollen but felt that is due to the anti-seizure drugs. 
More moments to be happy.................Our oldest son had a Harvest lunch at his school. The 2nd grade students did several bible verses by memory and several worship songs. They had carved pumpkins on all the tables with mums they had planted for us parents to take home. The best part of all was that Paul got to be there with me and Hunter, which was special. Paul's ofice is an hour commute from home (more with lovely Seattle traffic) so many times I fly solo to these daytime events. I did get the date to him early enough and so he was able to work locally that day. We got to eat lunch together which was soups, chili, cornbread, cheese and crackers and lots of pies!

 

That same day as the Harvest Lunch, Hailey had her first Kindergarten field trip to our local pumpkin patch. I had volunteered to be a driver and Hailey was so surprised when we pulled up and she got out of the car and saw her daddy...she ran and gave the biggest hug...I wish I had got a picture of that...super sweet moment!

 

Are All Meds the Same?

I just wonder....because they sure don't look the same...and I am not talking about the casing, I am talking the med inside the capsule!

I decided since I pay no co-pay at Children's I should try and get all Hudson's drugs there, as inconveneinet as it is sometimes(45min-1 hour drive), because when your child is on a 2-3 page med list, all those co-pays add up fast, not to mention the ones that are not scripted and I purchase online and in vitamin stores. Up until now I have only gotten the meds that had large co-pays, or that could not be filled at my local pharmacy.

Friday I picked up Hudson's 100mg capsules of Zonisamide, and 25mg capsules (he gets 225 mg at night)
I have noticed when I open the capsules and prepare to syringe them, the powdery substance is completely different than what he has been getting at our local pharmacy. This powder is more dense, the other was more powdery!
Then I noticed yesterday and today that his seizures are less intense, and not holding as long.........
because for a while there they were getting more intense and a few seconds longer!
Of course it could be the increase in Depakote we did 2 weeks ago, with a medically complex kid it is always a guessing game....BUT.... I can't help but wonder....why 2 drugs labeled the same and the same mg, appear so different? What if this is a purer form? Being that it is from Children's I want to believe that it may be.
What about all the other drugs we have tried and failed, could there be a "better" form out there and we gave up with out knowing or trying?  Because you just take what you are given.....at the pharmacy.

Can't help but wonder!

I guess I have this skepticism when it comes to drugs...of any form. Which is why I am so skeptical of the fact that Children's Hospital...A REGIONAL MEDICAL FACILITY....says that at this time they can only vaccinate their patients and not entire families because the state of WA does not have adequate supply......
yet you go to the local  grocery store and there are banners posted  to come and get your flu shot! 
 Not sure what it is they are shooting, but if  a regional children's hospital can't provide me with it at this time, I certainly don't want the grocery stores flu shot special!

This is why I wonder if all meds really are the same!?!

Medical Mumbo Jumbo....Calling all Braniacs!!!

I guess by now, those who read my blog, may realize it is all or nothing with me. I have 3 kids, rarely do I find enough time in the day to spend enough time to sit at my computer and go through emails, shop,research, follow other blogs, and blog myself...can't do it all...BUT...Hudson is bathed, and all three kids are in my bed watching Disney channel and Paul is catching up on Mad Men (?) I don't watch it, so I figured it is a good time to whip out a second posting which is not as fun as the last, but important.

I am trying to understand this disease that is called Mitochondrial Disease...I am trying to understand Hudson's mito disease...I am thinking it is time to give up...my brain just can't wrap around and comprehend most of what I am told when it comes to Hudson. I have been trying to piece emails together, reading them, over and over again to see if I  can gain a better understanding, if I just pound it into my head maybe I will understand!?!?...HELP!

The one thing I like, is that every time Hudson sees his Neurologist, we recieve a copy of his clinic notes in the mail after our visit. Thing is, it seems there is always something in his notes that raise questions for me, and I am lucky enough to have access to him via email, so I can ask him my questions direct.

So, I will piece these together and maybe someone out there will get it.  I will try to explain chain of events so I do not confuse you more than I am confused. Here goes...

This email is from me back in January '09, shooting my questions at him...

I was reading the clinic notes and you stated Hudson has decreased amounts of the marker enzyme citrate synthase, which would suggest a posibilty of a depletion syndrome. What exactly does this mean? What is a depletion syndrome?

I know there is a wide spectrum of Mitochondrial disease, and am wondering where Hudson falls in this spectrum? Is the type he has a more common or typical form? Is it unique? What do we know about the specific type of mito disease Hudson has?

nuero response;

Hudson has an electron transport chain defect, meaning that when we assay the mitochondria functioning (to make energy or ATP), we found that several of the parts of this electron transport chain had low activities (how well they function). Many patients just have a single complex (there are 5 complexes in total) that is dysfunctional; some have multiple (like Hudson). Hudson had significant decreases in complex I/III, II/III, III, and IV. So multiple complexes are significantly low. The citrate synthase is what we call a marker enzyme. This means that all individual mitochondria have about the same level or activity of this enzyme. So, in theory, the more citrate synthase activity the more mitochondria should be present. The reverse holds true as well. In those children that we have tested for depletion syndromes (this means that there are less than normal mitochondrial numbers present), we have found many have low citrate synthase activity.

As far as I know, there are no mitochondrial depletion syndromes that have been published that involve infantile spasms or intractable seizures that begin during the first year of live, with the exception of Alpers syndrome. Hudson does not have Alpers syndrome (this involves catastrophic focal seizures and liver failure). Hudson is not my only patient who would fit the picture of catastrophic seizures and what looks like depletion syndrome but not having Alpers.

This last week I got a copy of the clinic notes from our last visit. Some key points, bits and pieces, from his notes...

REASON FOR VISIT: Ongoing care for Mitochondrial Cytopathy and intractable epilepsy

(I get intractable epilepsy...that's the easy part! His mito is labeled cytopathy...researching this!)

HISTORY OF PRESENT ILLNESS (his comments from viewing the seizure on video):

"Mother brought a video of his seizures and Hudson stiffens his bodyfor approximately 2-3 seconds and subsequently eyes becoming tonic in an upward position. These lasted approximately less than 1 minute apart."

ASSESSMENT AND PLAN(this is where my question were raised):" In summary, Hudson is a 2 year old young boy with a history of epiletic spasms in the context of a mitochondrial cytopathy. Hudson has deficiencies within electron transport chain within complexes I/III, II/III, III, and IV. In addition, there is decrease in the marker enzyme citrate synthase of approximately 40% of normal values. We sent off for depletion testing. Hudson's muscle biopsy did not demonstrate mtDNA depletion. In fact, his mitochondrial DNA copy was 150% of normal values for age, suggesting that his deficiency does not include the depletion enzymes."

and so I emailed him...

I received a copy of your clinic notes today, and after reading it over, I have a question and was hoping you could explain in most simple terms?

Under Assessment and Plan you state ...

"we sent for depletion testing. Hudson's muscle biopsy did not demonstrate mtDNA depletion. In fact, his mitochondrial DNA copy number was 150% of normal values for age, suggesting that his deficiency does not include depletion enzymes."

What exactly does that mean? When we had our clinic visit and I asked you what type of Mito disease, you said enzyme depletion in complex I,III,IV...does this contradict the above?  I am very confused.

I remember you telling me earlier in the year that you sent left over muscle for further testing, I am assuming that is what the above is referencing to?

On another note, I talked to Pam this week and we started talking swine flu and I told her I thought you told me Hudson does not need that vaccine only the regular flu shot vaccine. She said Hudson MUST get the regular flu shot and the swine flu vaccine (not nasal mist form) when it is available. So I need clarification on that as well, just to be sure. He has had 1 of 2 regular flu shots, and I will get the 2nd next month.

If Hudson does need to get the swine flu vaccine does that mean all member of his family as well? I was planning on doing the regular flu shot for his siblings and Paul and I, but am not too comfortable with the swine flu. Please let me know how this should be handled.

Neuro Response....

Hudson has complex I, III. and IV defects in enzyme activity, not depletion. The depletions assay looks at mitochondrial DNA copy number (how much DNA is in each mitochondria). Austin has more than enough mitochondrial DNA. Yes, this is what we sent the extra muscle for further testing (mitochondrial DNA depletion or copy number).

Hudson needs a flu shot and I suggest he get the swine flu shot(s). If he gets the swine flu, it could be very bad for his health. However, I only recommend things so do what your heart is telling you to do. It would be more likely that Hudson would get the flu or swine flu from someone else, the more exposure to others the more likely. It would be good prevention if other members of the family do not get either the flu or swine flu. If this means getting the vaccines, then I recommend this to be done.

So....is it just me, and my flaky, mommy-weary brain....I still don't get it....and those are his simple terms...I feel stupid...I can't understand this, I never was good at science, biology...wish now I was or I had paid better attention. My last email to him was just to tell me if this last bit of info, the "no depletion enzyme" part, I just want to know if this is good news..because in this disease, there really in no GOOD news. I have yet to hear back.

I was also less than thrilled to see he copied the mito nurse on my email, because now I know I stepped on her toes by asking about the flu. I am a little uncertain what will be done with that as well. I will most likely get both shots for Hudson, but I am still not comfortable with the swine one for Hunter and Hailey. I guess I need to pray about this and take it from there. (Heidi...to answer your question...you can request the swine flu shot without the thernerisol, otherwise I believe you will get the preservative if you don't speak up. That is what Pam told me!)

I do want to mention that I love our neuro, as confused as he makes me with his medical talk, I am blessed to have Hudson in his care. How many doctors allow patients to email them? He is very caring and dedicated to his kids, I just wish I had the capacity to understand this complex disease.

So there you have it...the latest and greatest on the medical mumbo jumbo....I give up trying to understand....at least for tonight!

Adventures

It has been a very busy couple of days, in fact today I have gone nowhere, because I just want to be home, and do nothing!
Wednesday I picked the kids up from school and we drove to Portland, Oregon. An easy drive (2ish hours)
and I was easily distracted by the beauty of the fall foliage...the colors were brilliant. Autumn is my absolute favorite time of year. We got to my brothers and hung out. For those who do not know my bro....a brief run-down...single, never been married, pilot, loves his freedom and he is older than me... but he would probably not be happy if I announce how old(I will just say he celebrated a BIG one recently!). Anyways, loves his niece and nephews, loves to hype them up on lots of sugar, loves to spoil them! (all I can say, as far as the sugar thing...can't wait for paybacks, one day...when he has kids!)/( i hope)
He rents an apartment downtown in the Pearl District. His place is small...1 bed/1 bath...we were cozy, but the kids love it there. When my brother asked Hunter and Hailey what they wanted for dinner, they both shouted "sushi!" (I have then trained well) So sushi it was. We got back to his place and he had quite the dessert buffet for these kids....cheesecake, lemon bars, Ben and Jerry's, chocolate...my kids were in heaven!

I did get a 3 hour shopping trip in...without the kids, so that was fun. I also got to visit my aunt before we left to head back home. Hudson did very well. He is such a trooper. He was awake, babbling in the car, to Portland and on our way back home. He had a short crying fit at the sushi place but it was because he was overtired...we were eating at 9, which is his bedtime! Thank goodness they had loud rock music on...it was a very alternative type of a restaurant, lots of interesting characters, but hey, that's what you find in the city! Other than that, he was an angel. We got back home Thursday night and we were all exhausted.
Friday was our planned trip to the pumpkin patch. I woke up hearing the rain pounding outside. It was bleak, wet, and damp, and all I thought was how am I going to do this with Hudson? Broken stroller, horrible cough, and 2 other kids that have been looking forward to seeing their friends and doing the annual pumpkin patch. I figured I would just manage. It is so hard, and I struggle with stuff like this. The last 2 years Hunter and Hailey's lives as they knew it were turned upside down...sick baby brother, hospital stays, a weepy mom, time and attention on everything but them. For the most part, they have handled the last 2 years really well. I don't want to "rob" them of anymore...Hudson needed us then, and now, but it is a work in progress... to give them all what they need from me, to help them to understand Hudson and not resent him...to keep things as normal for them as possible, because they deserve a childhood filled with good memories and lasting traditions and a mommy who is not solely absorbed with their sick baby brother...and to be completely honest...I feel like I have lost a part of their last 2 years as well...Hailey was 3 now 5...she has changed so much in those years, and I feel like I missed out, all of  the sudden she is not a toddler...I was cheated...because of seizures...we were both cheated...and now she is 5....and I need to be present...so I don't miss out on anymore.
2 years ago they didn't have our traditional Halloween, pumpkin patch outing...Hudson was in the hospital...but we did the best we could at that time, and that is where we needed to be, but having a sick child can so easily suck the life out of a family...traditions...outings...happiness...normalcy....and then, somehow, through time....we have found a new normal, and fit that new normal into our holiday traditions, to find happiness again, to not feel robbed.... so we can give all 3 of our kids what they need. It is truly a work in progress.

As I was trying to get out the door, my mom called and would not allow me to take Hudson to the farm. She was worried about his cough, the weather and she insisted I leave him with her. I was relieved...really relieved! The rest of our day will be  explained with pictures....we had so much fun....and we actually lucked out with the weather...for most of our outdoor activities it has stopped raining, the sun even came out a little...a good day....Hudson was warm, and well taken care of by his Nanna at home and Hunter and Hailey got their day at the pumpkin patch with their friends!

Praises...Never Ending Stroller Saga...Swine Flu...No School...

Some Random Things Going on So Here Goes....

 First and foremost.... Praise God Cody is doing much better, and continues to slowly improve...prayers are being answered. For me personally it gives a lot of hope, that a medically fragile child can fight through this flu if treated quickly enough. I know every case is different, but somehow you only seem to hear about the "deaths" when it comes to this flu and pre-existing conditions!
Which leads me to my next point of confusion...because I SWEAR our neuro told me Hudson only needed the flu (regular) shot, and today when I called the Mito nurse and mentioned this during our swine flu conversation, she tells me he must not understood, Hudson has to have the regular flu shot and the swine flu shot! This doesn't sit well with me. I am really confused because my mom agreed with me, the Dr. S said NO swine flu shot, but he did say the swine flu would be the worse of the 2 flu's for Hudson to get...which is why I mentioned it today to the Mito nurse. She looked at company emails, said that at this time there is only the nasal mist, which Hudson can't have, and then she said the vaccine form should be out in the next week or so. Then as as she was reading this to me said, "Patients can choose the vaccine with the preservative thermerisol, or preservative free." WHY would anyone want a shot of thermerisol? I asked her that... I couldn't believe you have an option! Crazy....one of the reasons I don't get vaccines for my kids....you have no idea what they put in them, and when you start researching what really is in them, it will blow your mind! Anyways...not sure if I should email our doc, becasue, honestly...I am o.k. with giving Hunter and Hailey the regular flu shot (sorta) for Hudson's sake, but I really am uncomfortable giving the other...what to do? I hate having to worry about "stepping on toes" what will the Mito Nurse think if I question what she has told me and email the nuero? Ughhhh!

Everything went great with the M.D.A yesterday. They were super kind, sympathetic to our needs, and very willing to help. It was when I took the prescription to our pharmacy and gave it to the gal who does all the paper prep work. She still made me sign, date and put down the time, recognizing if all fails I am responsible for the $4, 156.00 bill. I signed, begrudgingly...because I can't believe the nonsense we parents have to go through for our kids. I stood there hoping she "got" my sense of urgency in this matter, that she was going to finish the paper trail, call the order in, and tell me that they would call as soon as the stroller arrives. Instead, I got the sense that I was another #, that I was being added to the pile of papers she had sitting in front of me, on her desk, and that I would be lucky if she processes all of this by months end. So....I made a phone call today....to the rep I saw last week, who seemed to "get it," to see if he can speed up the process, because there really shouldn't be more than a fax or 2 to have this COMPLETE....so I am waiting to hear back....I always feel like I am at the mercy of SOMEONE......and it stinks!

Hunter and Hailey have no school Thur. or Friday, and Paul is in Vegas all week for work, so the kids and I are driving to Portland on Wednesday to see their Uncle (my brother) and we will do a sleepover and come home on Thursday evening. I hope to escape to my all time favorite kids store, Hanna Anderson, for a little tax free shopping...maybe get Christmas outfits....I always leave that store with too much!
Anyways, the kids are excited. Friday we are going to Remlinger Farms with some friends...it is a farm that does a big Harvest festival with rides, animals, huge hay maze, live puppet show...it's a full day of fun, and we haven't gone since Hunter was a toddler, so it will be a fun day, exhausting.... but fun. I hope the weather stays dry for us, Hudson most likely won't have his stroller, and well... you know...his stroller...lets just say I am going to have to figure out how to attach an umbrella to his umbrella stroller!

That is it for now...Hudson is having some hard tonics...prayers are needed.....also for his horrible- now going on 3 weeks- croupy, mucous, junky cough.

Prayer Request

I found out tonight that a dear friend of mine is at Children's hospital with her son, he has a confirmed case of swine flu. I am sickened by this news!
This mom and darling boy hold a special place in my heart as she was the first person I came in contact with via the internet through her blog, and she encouraged me with huge amounts of support, prayer, words of encouragement and love. She directed me to Seattle Children's and the amazing neurologist we both have today.
She continues to provide me and many other mom's with advice,prayer and support,all while juggling her son who suffers from seizures and mitochondrial disease as well as a healthy toddler.She is one of those who God placed in my life during the beginning, and some of the darkest days of this uncertain life of seizures. We have emailed, talked, text-ed,driven to each others houses,have eaten together, seen each other at the hospital,  have cried many tears,and even some laughter shared...our visits far too few, but......we share a bond...boys who are saturated with seizures as a result of mitochondrial disease.
We all know our children with fragile immune systems, have a much harder time fighting this crazy flu that everyone is talking about, it is a fear of mine as I have voiced in previous postings...now it is hitting too close to home.
This family relies on prayer and their faith in God to see them through all of life's circumstances.
Please stop and just pray for sweet Cody and his family through this uncertain time.
Right now this is the best I can do for this family, asking for this prayer request, as I know many of my friends and family reading this will lift Cody and his family up in prayer and in His care.
Thanks.

Crossing all fingers and toes

I am not normally a supersticious  kind of gal.....BUT...... when it comes to this medical stroller I AM!
So I am crossing whatever limbs I have, hoping and praying Monday will play out like I have it all planned in my mind.......
Bright and early I have Hudson's MDA Clininc appointment, with an MDA Dr. I have already called their office to make sure they had ALL the requested medical records....don't want to get there to find out we are missing documentation. So that is all set.
I also went and checked out the lastest and greatest when it comes to medical strollers with Hudson's O.T
I am actually glad I did because it confirmed that we made the right choice, not just for Hudson but for me as well. We looked at 3 others, can't remeber the names of them all...Bingo, Jazz, and then a new one they got in last week that has these metal springs where the childs back rests. It basically massages and stimulates those muscles, especially as they move. Hudson's O.T. put him in it and he was really grooving in it...as it seemed to activate his muscles. So I thought I would inquire on cost difference between what we have vs. this newest device....OK, get ready.....remeber our stroller is costing us over $4,000.00 .......the rep. told me THOUSANDS .....thousands more than our 4 grand gig!!!!!  Sorry Hudson you are not getting the Mercedes...you will be getting the Honda......and considering he is in a broken down station wagon the Honda will do just fine!!!!  Seriously though, I am soooo excited to get his stroller....he looked so good in it, and it wasn't even customized for him!
Another thing I like is out of all the strollers we looked at, it looks most like a stroller and not a wheel chair or "medical-e" looking. He is so little, I am just not ready for anything looking to medical-ish. I know it might seem silly, but it serves BOTH(his body/my head) of us well, and I like that.
If and when that time comes, and he needs a wheel chair, it will be when he is bigger. I have never been told he will not walk, so I will remain realistically hopeful that one day he will!. 
I am going to take a before and after pic once I get this beauty...because he looks so pathetic in what we are using....we look like we we should qualify for all state help....I mean it is broken and he is clearly too big and I am sure it looks as if he is neglected. So now I am embaressed to even put him in his old broken down station wagon...so if all goes well I will post a before and after pic...Hudson in the wagon and Hudson in his new rig!

With fingers and toes crossed I will go to our Monday appointment, leave with a slip of paper, go directly to the pharmacy with that piece of paper entailing all the info they need, they will place the order, and by this time next week Hudson will be riding in style! The reason I expect it so quickly is because this distributor is here in Seattle and the pharmacy said they usually take 1 day after the order is placed....that was great news, because I can't wait to get my hands on this gem!

No Funk........We Have A Plan!!!

Today went smooth, which was great, because I was running on very little sleep and NO coffee, and was out the door and  on my way to Seattle after dropping the kids off to school at 8:15. Did I mention NO coffee??? Not good for this Seattle girl...thankfully there was no traffic, which is unheard of here in Seattle, so I had plenty of time to stop at Starbucks once we were close to the hospital.
My mom came with me, which was great because it is only for my Saneto appointments that I find it so important to have a 2nd set of ears....I am always questioning things I heard, info given, etc. after I walk out of there....so it is great to have somebody to recall all the things my tired, weary mommy brain can't remember.
It also just so happened a newer blogging/mito-friend/mommy had the appointment prior to ours with Dr. S so we were hoping to meet, and  we did, and that was awesome... to actually meet someone who also has a son with mito, I just wish it wasn't in between appointments and we had more time. (BTW Heidi, Jack is ADORABLE! I fell in love the minute I met him...what a precious kid!) 

Our appointment started with the dietician first. He weighed the same 25 lbs as last week, which was good, because believe it or not, there has been times I have had several appointments in a 1-2 week span and some how he has been able to grow and shrink, gain and loose in one week! I just don't get why that can't use weight and measurements from one week ago...I mean really, so silly!
The dietician says for his height he should be a more ideal 26 lbs, so she wants me to feed him 1 oz. more 5/6 feeds. So he will get  5-5oz feeds, and 1-4oz plus any oral feeds. I can handle it as long as the vomiting doesn't start again, and I told her that. She understood. :)

The Mito nurse came in next and we talked about all the things Hudson is doing, what his seizures looked like, etc. Dr. S walked in and I went over how Hudson has really made some positive changes since we were in last. I told him about the eye contact, how he is not so fixated to the right, how he rolls BOTH ways now, vocalizing more, interacting with toys, putting his hands up to his mouth (and biting himself and then crying hysterically! Yes, he has bitten himself twice now not realizing it is not a cheese puff, or a bottle or spoon but his own finger!!!! Poor kid!) So after our talk, it was time to talk seizures. I told him the recent change the last couple of days and then he asked to watch the video I had taken a few weeks ago. This is what I love about Dr. S.....he watches the seizure, which I had the camera all set so the seizure would start shortly after pressing the play button....but he just sat and watched Hudson....in the video....well after the seizure happened. He watched and studied what Hudson was doing and then he would look up and look at Hudson in the office and then look back and watch him in the video. He studies, thinks, observes my son.....you can almost see his wheels spinning ....trying to figure all of this out. My first question was is this a tonic seizure, because from my description he told me it was a tonic seizure back in June. He thought it looks like it is. He agreed that Hudson's spasms are nearly gone from the way things look. He does not appear to be having clusters or infantile spasms, certainly not having the 100's of spasms/clusters he was having 2 years ago. How can we know for sure? Yep, just as I thought....  EEG. Dr. S feels Hudson's recent development is due to the fact that he is not having the cluster of spasms and possibly coming out of the infantile spasms as these more typical epileptic seizures are occurring. He said that the very worst and most harmful are the spasms, even though the tonic seizures *look* far worse. Really when I wrap my brain around it, up until a few months ago Hudson was having anywhere from 60-160 spams a day, where 1 cluster could last anywhere from 5-25 minutes. Now he is having 1-5 tonic seizures a day, *single* seizures from what we can tell and those last about 8 seconds . Where he used to spend the majority of the time in a constant catastrophic state of spasms he now *seems* to be spending more time being aware, playful, vocal, slowly learning new things.
God willing....if these spasms are stopping, and we continue to see no more clusters....this will be a very good thing. Obviously seizures are bad...period...there are no *good* seizures...but the end of spasms is good.

I want to mention too that we briefly talked about the MRI we did over the summer and that Hudson's brain is structurally in tact. His seizures are purely due to Mito disease and energy issues,there are no structural issues or abnormalities.  Basically, he has a normal brain, as weird as that may seem.
I asked once again if we know any more on the type of Mito disease Hudson has. He said Hudson  has an enzyme deficiency in complexes 1,3, and 5. There are 5 complexes total. That is it, and that seems to be the final answer for specifics.

THE PLAN:
We are increasing the Depakote a little bit, and see what that does. I am taking him off the Leucovorin in 1 month and see what that does. We will observe the seizures and see where that goes. In January we will do a 24 hour EEG and know exactly what type of seizures Hudson is having and Dr. S will decide what route to take for meds.
That is the plan, and I am happy with it. All of the holidays and the kids and school will eat up the next 3 months fast, so I am o.k. to wait...for once I am o.k. to wait. I think it is because I know Hudson is on his radar, he has a good idea of what is going on, and he assured me we will never stop trying to stop the seizures. Maybe too, it is the hope that the *I.S.* part of this nightmare is finally ceasing and will be laid to rest, and that Hudson in spite of seizures, will continue to surprise us with developement....i will take snail-slow development...it is something, and something is way better that the nothing we have had the last 2 years. When Dr. S said goodbye, and was at the door he said "We will take care of this, don't worry will take care of this." I looked at my mom and and told her that was exactly what I needed to hear. When he said *this* to me it meant Hudson, the seizures, hope, and that we, as a team, continue to fight the monster.

The appointment ended with a needle poke, which I begrudgingly agreed to. You see, I have a hard time with vaccinations, and I know it is very contrversial, but when I had my first born I did what every new mom is told and that is you vaccinate your baby....but down the road I started researching vaccines and well that could be a whole other blog post, but what I have been most comfortable to do for my kids is not to vaccinate....no right/wrong answer, you must do what you are comfortable with. Today, I wasn't really given the option, I was told firmly by the Mito Nurse and Dr. S that Hudson must get the flu vaccine and anyone in my family must. When I voiced my hesitation I was told this is very serious and I said "death?" and I got the nod. So, Hudson got the flu shot. My kids are less than thrilled, Hunter only knows what a blood draw is like and Hailey has no needle experiences...Lord have mercy whoever gets my kids to poke! Yes, we will all be getting flu shots in the Austin household...a first! So I guess this goes out to all my close friends, who have there kids over here for playdates....if you are reading this, and your kids want to play here this winter...you know what you need to do....sorry kids! :) Seriously though... this flu thing has me a bit freaked out...I started thinking about church daycare, the PT clinic, grocery stores, airborne crud.....I could seriously make myself crazy! I will use reasonable precaution, and trust God.

I did it again...sorry so long...hopefully we will have a quiet couple of months.
Always rely on those of you who pray...for a healthy winter, no spasms/clusters, always an end to seizures, continued development.

It's been a while.....

I really have no excuses why I haven't been blogging. I guess I have just been busy, and tired and so I just haven't had the energy. If I wait too long I know this will be way to long, so although I don't really have any profound news since last time I sat here, I figured I better try and briefly update, so here goes.....

Stroller Woes....I pretty much figured out how I things got so screwed up. I never actually got a grant from the MDA...you see, the MDA gives money to Children's in their nueromuscular clinic, and they allcate those funds. I believe the person I talked to months ago was a Children's employee, not an MDA employee, and put Hudson on the grant. I thought all was good. When I spoke to the gal from Children's in that clinic she took Hudson off the grant saying he did not qualify. Thank God, the next day I got a call from our local MDA clinic and she was super nice. She simply wanted to help after I explained the whole situation. Mitochondrial disease is a nueromuscular disease, and with the MDA it is supported, it is not only certain forms of this disease, but the disease itself. In order to get medical equipment assitance Hudson has to see a MDA Clinic Dr. which we now have set for October 19th in Olympia. This will put him in their system, they pay my co-pay, and I should leave with a prescription that I can take to our ordering pharmacy and hopefully get this stroller orderd before November 1st. The MDA will give up to $2,000.00 for equipment every 3 years. This will help alot! Hudson's O.T. says there are 2 new strollers that came out since we fitted Hudson and I should look before submitting. I am still stressed because the whole time thing....new insurance kicking in November 1, but told her I am open to checking them out if they have models to look at.
I sooo appreciate all the resources and ideas that were emailed to me. I think I googled every resource, word association I could think trying to find out if the state of WA has any "hidden" programs I am unaware....NOTHING! I am serious...this has got to be one of the worst states to live in with a medically fragile child....if you don't qualify for SSI, Medicaid, or DSHS, there are NO options....period...it sucks for us middle class folks...not poor enough, certainly will never be rich enough to pay for all the needs of a fragile child as ours. But you know what? In the last two years, when we could have lost everything because of all this medical crud....God provides...in some form or another He provides.....a hard earned bonus that was way more than ever expected, a gifted check ,fund-raising of parents, financial assistance through Children's, and now the MDA calling me in the end....God's provision.....we are not homeless, foodless, jobless...my children go to Christian school, Hudson has the leading mito dr. in the country....God has provided richly for us in so many ways. Sometimes in the thick of it, when I am fighting with insurance, looking at the medical bills, wondering if we really can afford to send our kids to private school, somehow, down the road, I see we are still doing it...we are still paying our bills, have a nice home, send our kids to a wonderful private school, have the best doctors for Hudson, all the meds he needs, and now, hopefully the stroller that is needed sooo badly...he will have. So today, I am grateful.

Seizures....still going, blahhh, just hate em! Yesterday he had a really strong tonic, a little longer and stronger than normal. It happened again today. It would take a miracle for Hudson to find seizure freedom, I just don't think there is a drug out there that is waiting for him, to rid these monsters...that's just how it feels. I am sort of curious if the infantile spasms are ceasing, I see very little, mild ones, but wonderif we are entering the world of more generalized epilepsy....I guess only an EEG can tell us that....not sure if it is worth the torture to find out.

A cold......Hudson caught one. I have been hand sanitizing like crazy....first thing when I pick the kids up from school...didn't work. Guess who caught it mid week? Yep me, probably cuz I am tired, run down, and because he was literally blowing mucous out of his mouth and all over me! So of course I am going to get it. Didn't last long....2 days and I feel better. Hudson sounds as bad today as a week ago. It takes forever for his little body to fight anything, as simple as what he has which is a cough...a nasty, croupy, mucousy cough....no fever, no stuffy nose, no ear or throat issues....just a cough and he can't get rid of it. He sounds so junky if you heard him you just want to start clearing your throat, as if it will help him or he would get a clue...poor kid, those muscles are just too weak to properly move all that thick junk.

GI......Hudson saw GI doc (Burpee is his last name....so fitting....makes me smile :) last week. He gained 2 lbs since June...he is 25lbs. The dr. was pleased with his steeady growth in weight and length. Pleased with very little vomitting (none lately) and so we left things as is. He talked about taking him off the prevacid, then we looked at each other and agree we should keep things the way they are....I love when we are in the no vomiting era...it's a treat...so why mess with a good thing?

Neurology.....tomorrow we see Dr. S and the dietician. I am planning to bring my video of the tonic I got on tape. We haven't seen Dr.S since the first week of June. I am a little nervous, but I know really that is silly. I will ask for a "plan" but not sure I will get one this time around, now that we are trying our "last ditch effort drug" I will ask for one though, because I need a plan for my boy....I can't just stop fighting these seizures for him....I need to know we are doing something, I am not ready to throw my hands up and let the seizures win. He battles these nasty things daily, and although no drug has worked, I am not ready to give up.


That's it for now....sorry this brief update wasn't so brief...that happens with me. I would love to come home from our nuero apt. tomorrow excited and ready to share our "plan" for Hudson. Prayers for a good visit tomorrow is appreciated. If there is no plan, I may be in a funk, and it may take me a while to update....we'll see what tomorrow brings.

Check it Out.....

I have been super busy with life, and will do an update soon...about the stroller,seizures,etc.
I just quickly wanted to share this, nothing that has to do with Hudson, illness,etc.

Most of my friends know that I love, love, love our church, it is the perfect fit for our family. Our  pastor is an awesome speaker when it comes to the bible, he is truly gifted. He has been on ABC's Nightline several times now and he was on again last night. Check it out...and if he is not for you, no worries, there is some footage of Seattle you can check out too! :)

I will post soon about Hudson!
Mark Driscoll on Idolatry

Stroller Woes

I am so flippin fried....I just need to SCREAM!!!!!

Back in March Hudson went for evaluation with his P.T.  for a medical stroller. We picked out the stroller, went through the list of needs, the P.T. wrote his letter of justification for the stroller and all the extras we were adding to it that are all required and needed to best accomodate Hudson. Once all the paperwork was complete, it was sent into our insurance for pre-approval.
Prior to this meeting in March, I did ALL my homework. You see, any "medical" device is jacked up in price, way beyond a typical device, such as a stroller. I was forewarned that this was going to cost a lot of money, to get Hudson something to serve all his needs. So I started making calls. Researching. The end result was my insurance would cover 50% up to $2,000.00 and after several calls with the MDA, I was directed to their Seattle clinic located within Children's hospital. I was told Hudson qualifiied because of his mito diagnosis, that she could see all his records and then I did not need to send any further info because she had all she needed. I chicken scratched on what was probably a piece of mail, a back of an envelope...the names, phone numbers, details of  info I was told. As I was talk to this wonderful gal, who was making this all so simple, she told me that it was all taken care of, Hudson would recieve a grant for his medical stroller, she had put it in the computer while talking to me. She told me to go forward and get what my son needs and contact them when we have paperwork to submit. It was all such a huge relief, knowing Hudson was going to be suited with a stroller just for him and after insurance they would cover up to $2,000.00 for a three year period for medical equipment. So, here up until this week  we sit...and wait...and wait.....and wait...and now it is October and I just got a letter from our insurance company that durable medical equipment does not need pre-authorization, and therefore will not be looked at until it is submitted as a claim, which of course they don't guarantee payment. O.K. not too worried about that, I figured if they really want to be jerks and make me go through more work, I will appeal if it is denied, get every one I know to write letters of justification...it simply can't be denied. So, then I got a call from the gal at the pharmacy who also recieved this letter and tells me I need to sign a form stating I understand if my insurance denies the claim that I am aware I will be paying $4,136.74....YES, that is the cost for the stroller! If my insurance pays their portion I am stuck with $2,136.74 Ahhhh, but I have the MDA Grant, which by the way was also stated on Hudson's reminder notices for appt's...it states he has this grant. So, I go to retrieve that piece of paper, from 7 months ago, that I jotted down all the info as I was speaking to these people. Can't find it....spent a whole afternoon, at the desk, in Hudson's binders of medical documents, every place imaginable to find those numbers, that name of the mysterious gal who granted us a gift to help obtain this need...but I can't find it! So, I figure I will look online, and called the seattle #, and started explaining my sitaution, the conversation I had 7 months ago, and letting them know we are ready for the assistance toward the stroller. It was a man on the other end...very clinical, not too friendly. I could feel my blood pressure rising as he told me they have NOTHING on record for my baby. How could that be when 7 months ago the gal pulled Hudson's records...we were given the grant, it says on my Children's paprework!!!! Nope, he had nothing...asked me what type of mito disease...said he doesn't know who I spoke to will look into it, will get back to me. I  couldn't believe this. So I called any and every contact I could think of who may know who I spoke to...I called Children's P.T.  clinic and left a message, left a message with our financial counselor at Children's, and finally just asked for the MDA clinic and the operator led me to a women's voicemail....I was praying it was she who could help me. Yesterday, I spoke to her and guess what? She tells me I was misinformed, doesn't know who I spoke to and that Hudson has Mitochondrial Cytopathy and they don't cover ALL Mito diseases only Mitochondrial Myopathy. Sorry, she says, and takes Hudson off the grant.....I wanted to scream and cry all at the same time....still do!
I can't believe we waited 7 months to find out we didn't need to wait 7 months because our insurance doesn't pre approve and now we have no help either! Oh, and the kicker? Our insurance changes Novemeber 1, yep we start all over with a new insurance company and they are not honoring what we have paid out thus far this year, and it is pretty much the same benefit for durable med equipment...$2,000.00 max So we would be better off using our current insurance, otherwise if we use the new we will use up that benefit and what if Hudson need another piece of equipment...we would have to wait a year!
I HATE insurance, and the fact that something that is so important for Hudson's spine, head, feet, etc. costs over $4,000. and there is no one to help with that expense. Oh, I have been told if my husband lost his job, or I was a single mom, it would all be taken care of no problem...that just makes me want to pull my hair out...this world we live in makes me crazy at times. I nenver realized how much people have to go through with speacial needs. You not only have the pain of devastating illness, but the pain of trying your best to give your child the best life possible and in the meantime insurance companies, and medical companies take advantage of sitautions such as ours by charging ridiculous prices for medical eqiupment, then make us go jump through hoops to figure out financing and payment on all of these needs....Sorry, I am just so angry and saddened by this. Back at the beginning, now with a major time crunch because of insurance, no funding, and did I mention the canopy on the typical umbrella stroller we use just busted?Yeah, the canopy broke.....and we live in Seattle...and it is October....rain drops are falling on Hudson's head!

Praying for a door to open on this, and soon!