The rain has been very steady around here and sad to say so have the seizures.
Yesterday was a one of those days of seizing and sleeping. When he finally was awake we had several hours of fussiness and crying. Motrin didn't help, mommies arms didn't help, sister in his face trying to play with him didn't help, even a special someone who he hadn't seen for a few weeks couldn't help him...
something was bugging him, but what it was we will never know...
This morning he has already had 2 whoppers followed by one large and one small cluster.
The clouds have been looming overhead all weekend, feels like autumn months around here, I am almost ready to put a fire on...yes, that damp and dreary...
BUT there is one ray of light shining through the clouds...
Daddy's home!
Sunday, May 30, 2010
Wednesday, May 26, 2010
just like that...
my YAHOO....turn in to UGHHHH!!!
2 Tonic Seizures followed by a cluster of spasms all before
8:30 a.m. and within 1 hour.
so far?
This day stinks!!!!!
2 Tonic Seizures followed by a cluster of spasms all before
8:30 a.m. and within 1 hour.
so far?
This day stinks!!!!!
Tuesday, May 25, 2010
puffed veggie stick
I really don't know what possessed me to stick a Trader Joe"s puffed Veggie Stick in Hudson's mouth.
It has been months since he has eaten or taken a bottle orally.
He can aspirate, choke, throw-up....
So why did I put the end of a veggie stick up to his cute little heart shaped lips?
No clue why I let the puff stick sit there til I heard a.... "crunch!"
then I sat and watched to see what he would do...
he has never "crunched" anything or used his teeth in an eating fashion...
only baby foods, yogurt, applesauce...
but he did GREAT and actually seemed to like it and ate almost the whole stick!!!!
Out of all the little crunches he did he only coughed once...with no choking whatsoever!
Think I would be looked at as a BAD mom among the therapists because I did this?
I think it is pretty cool and want to tell speech on Friday but this may taint their view of me!
And by the way...
Hudson only had 2 tonics yesterday and today....
only a couple single spasms and a sorta half -strength tonic....
he slept a ton yesterday (12-7p.m. then thru the night) for 45 min. the pre-school teacher and vision teacher tried to wake him up and no-such-luck and it was not due to any seizures!
He went to bed at 9:30 p.m. and as far as I know slept through the night, until about 8:30 this morning.
He is wild when awake...making lots of noise and moving lots, and he had a great session with his new P.T.
So...not sure what is going on with my little man...the nasal antibiotic seemed to clear up any cold he may have caught earlier....
we don't have many "good" days....at all...so what is up?
cuz I have to celebrate the partial breaks we DO get!!!!!!
Sunday, May 23, 2010
Signed-Sealed-Delivered
I had my phone consultation with the Research Coordinator last Wednesday.
The nice part...
she knows Hudson, and me.
It was the same gal that we saw and I spoke to weekly/monthly when Hudson was
on that research drug Ganaxolone.
It helped in making me feel very comfortable to ask all of my questions pertaining to
this latest research with this DNA testing.
I found out that there are 20 children that will be involved in this study.
There is a tier that has been created and right now they are working on tier 1-3.
Hudson is in this tier. What this means is that basically tier 1 is the most medically fragile and
greatly affected children. Dr. Santeto basically had much to do with who would be chosen for this study, he submitted names...which is why he were chosen. Laurie told me he is not in tier 1, but that he is middle of the row, so I am guessing tier 3. I told her, in my opinion, from what I see, and read, he is among the most fragile and affected and yet we have no real answers other than seizures due to electron transport chain deficiency.
The big question of course is, is there a "down-side" to participating in this study...because I don't see one, in fact I am thrilled we were chosen and able to do this.
She agreed...really no down-side other than you could get information you may not want to hear but I really can't imagine hearing anything worse than what I have heard in the past 3 years.
There is also a possibility that there could be nothing found, no further information. Again, no loss, really.
Some families have already gotten there results through this study. It can take up to 2 years, but it sounds like most are getting results pretty quickly.
For us, the info will go to Dr. Saneto, and then he will give us the results.
This study is only being done at Seattle Children's and the hope is this will become a "clinic" test in diagnosing mitochondrial disease.
Pretty amazing and very cool to be a part of something that could be beneficial to future mito families, even if it proves to give us no information on Hudson...it may help others get a less invasive way to diagnose this disease.
Laurie and I also talked about how Mito needs research money so bad. So many illnesses are treated at the "surface" level and are never researched at the "core" level. Meaning, as Laurie told me, it is believed many cancers, Parkinson's, Alzheimer's...and many more diseases/illnesses that have sudden onset are treated just for the disease at hand, but how do these appear out of nowhere in people? It is believed in the "mito world" that many of these are the result of mitochondrial dysfunction. Research costs so much money, but if we tackled the core of these diseases (the mitochondria) then we would get to the root of the problem and hopefully eradicate alot of these illnesses. Instead we are satisfied with not knowing why people come down with such sickness as long as we can treat and cure the symptom at hand.
This is why I am so grateful to have Hudson in Seattle. I know if any gains are made in mito research it will likely be here and to be a part of it and have opportunities such as this one is why we remain here.
God has truly turned so much of our pain and suffering to good.
I see things so much clearer when little things are revealed to me.
I continue to search for the miraculous ways God works in our lives daily.
No...it's certainly has not been in the obvious way of a miracle...an end to seizures, a miracle drug, etc.
but God does show his presence and his divine hands touching our lives on a daily basis...it is up to me to keep my eyes wide open to see what will be shown next.
I am praying for some answers by doing this test.
I am praying it will help us in our situation or somehow in the future.
I am praying this will help future families and their children affected by this disease.
I believe God has great purpose for Hudson and his life.
The papers went in the mail on Thursday and I will be called next week when they have submitted his DNA into the study.
Please join me in prayers for answers.
***********
Hudson's tonics remain steady, not quite as many, but I believe he has now come down with yet another cold.
The nice part...
she knows Hudson, and me.
It was the same gal that we saw and I spoke to weekly/monthly when Hudson was
on that research drug Ganaxolone.
It helped in making me feel very comfortable to ask all of my questions pertaining to
this latest research with this DNA testing.
I found out that there are 20 children that will be involved in this study.
There is a tier that has been created and right now they are working on tier 1-3.
Hudson is in this tier. What this means is that basically tier 1 is the most medically fragile and
greatly affected children. Dr. Santeto basically had much to do with who would be chosen for this study, he submitted names...which is why he were chosen. Laurie told me he is not in tier 1, but that he is middle of the row, so I am guessing tier 3. I told her, in my opinion, from what I see, and read, he is among the most fragile and affected and yet we have no real answers other than seizures due to electron transport chain deficiency.
The big question of course is, is there a "down-side" to participating in this study...because I don't see one, in fact I am thrilled we were chosen and able to do this.
She agreed...really no down-side other than you could get information you may not want to hear but I really can't imagine hearing anything worse than what I have heard in the past 3 years.
There is also a possibility that there could be nothing found, no further information. Again, no loss, really.
Some families have already gotten there results through this study. It can take up to 2 years, but it sounds like most are getting results pretty quickly.
For us, the info will go to Dr. Saneto, and then he will give us the results.
This study is only being done at Seattle Children's and the hope is this will become a "clinic" test in diagnosing mitochondrial disease.
Pretty amazing and very cool to be a part of something that could be beneficial to future mito families, even if it proves to give us no information on Hudson...it may help others get a less invasive way to diagnose this disease.
Laurie and I also talked about how Mito needs research money so bad. So many illnesses are treated at the "surface" level and are never researched at the "core" level. Meaning, as Laurie told me, it is believed many cancers, Parkinson's, Alzheimer's...and many more diseases/illnesses that have sudden onset are treated just for the disease at hand, but how do these appear out of nowhere in people? It is believed in the "mito world" that many of these are the result of mitochondrial dysfunction. Research costs so much money, but if we tackled the core of these diseases (the mitochondria) then we would get to the root of the problem and hopefully eradicate alot of these illnesses. Instead we are satisfied with not knowing why people come down with such sickness as long as we can treat and cure the symptom at hand.
This is why I am so grateful to have Hudson in Seattle. I know if any gains are made in mito research it will likely be here and to be a part of it and have opportunities such as this one is why we remain here.
God has truly turned so much of our pain and suffering to good.
I see things so much clearer when little things are revealed to me.
I continue to search for the miraculous ways God works in our lives daily.
No...it's certainly has not been in the obvious way of a miracle...an end to seizures, a miracle drug, etc.
but God does show his presence and his divine hands touching our lives on a daily basis...it is up to me to keep my eyes wide open to see what will be shown next.
I am praying for some answers by doing this test.
I am praying it will help us in our situation or somehow in the future.
I am praying this will help future families and their children affected by this disease.
I believe God has great purpose for Hudson and his life.
The papers went in the mail on Thursday and I will be called next week when they have submitted his DNA into the study.
Please join me in prayers for answers.
***********
Hudson's tonics remain steady, not quite as many, but I believe he has now come down with yet another cold.
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Hudson Tyler
Our sweet angel!