What I See Daily....

 Funny how life works...in my previous post from Saturday, after all of the excitement of Hudson "playing" with his toy, I thought I should try and capture his interactions on video. I also have been hoping to get a clip of his tonic seizures because last Friday I got a call from the Neurology dept. and they made an appointment for Hudson to see Dr. S and the dietitian. Last time we were in with Dr. S was in June, and I had tried my best to describe the seizures but could never capture one on video because by the time I see it coming, turn on the camera, the "biggie" is over. So I have been trying to think of how prepared I need to be at all times, so that I can get one of the ugly beasts on video before we go see him on Oct. 12th.

I didn't get much of his wonderful playing, as you will see. I think all of the playing before the seizure struck and then once it hit he wasn't up for a whole lot, finally getting sleepy eyes. Miss Thing, Hailey, had to get her little cutie patootie self in there, so it is not all gloom and doom.
I also think it is interesting to see how other children seizures look like compared to your own. Yes, in this crazy  I.S. world we don't compare milestones, it's all about seizures! Not comparing whose is worse or better, just seeing all the different looks and facets when it comes to the world of I.S. and seizures.

So, this is a tonic seizure, sometimes they can be a little stronger than this one, sometimes weaker, but I think this is one of the "uglies." Afterwards he has a small, very mild cluster of spasms, which you can mostly see in his eyes. Again, to the untrained eye you probably wouldn't know these are seizures, but I am sure all of the I.S. moms out there will spot them.

click here  for video;
A Glimpse into seizures

Games

I never thought I would say this, but I think Hudson is playing with me! You know how babies love to play that game where they have a toy and they throw it to the ground, you go pick it up, give it back to them, then they toss it again and this game can go on forever until you take that toy away? Well I think Hudson is playing that game with me! He is sitting at his high chair with a toy on his tray and he bats at it and bats at it until he throws it on the floor...he has done this 10 times....10 TIMES! I have a hard time believeing this is just an accident. If I don't go over right away to give it to him he gets vocal...yeah for Hudson!

He has also been doing wonderful with rolling over from back to belly and then getting himself  on his back again. And eye contact has been really great lately too...cool things...he is working so hard, you can just see it, it is all such hard work for him. I have noticed a huge improvement when he is on his belly and lifting his head, he is actually holding it up and turning his head. These are big improvements!
Not sure what to accredit to. The seizures are still very present. About 5 tonic seizures a day with some very mild spasms...some single and some clusters, but clusters remain small at about 10.
The Depakote? Oh, don't get me started...in short, I have noticed when I try to give it to him thru the G-tube they either get stuck in the med syringe or in the bolus tube...they don't dissolve!  (that was now 11 times :) with the toy!) So then I gave it to him with applesauce and he has been doing great eating it and getting it down. I thought I found the solution to my problem until about 4 hours after he had his a.m. dose he pooped and I noticed all these white beads in his poop!!!! So I emailed the mito nurse and she got back to me saying that she would call in a new prescription for syrup form...o.k. why wouldn't they give us that to begin with?? I opened the 2nd email from her and she said, no they couldn't prescribe that with Hudson on the Keto diet so just give it to him with the applesauce. Keto diet? He hasn't been on that for months! I am sort of fried with this whole thing. (A) I don't know how much of the depakote he is actually getting, and (B) shouldn't they know he is NOT on the Keto diet? and (C) Email me or call me back after I have made it very clear that administering a syrup would be far easier and I could have a much better idea of how this drug is working!  I must have called 5 times yesterday, only left 1 message, but come on!Ughhhhh! So today he goes up to the full dose, but I honestly don't think he is even at the level he should be with the difficulty of getting these little beads down and how much is he really absorbing? Of course now it is the weekend so I continue with the applesauce method.....So frustrating!

Tonight I am going with a friend out to dinner and then  to the Casting Crowns concert! Should be awesome...and a fun little getaway for the evening! So Paul is in charge of the three monkey's tonight...I have chillii in the crock pot so they are set for dinner....and I am off for a fun night!

Thanks to all for the prayers this last week and always! Life can have so many up's and downs, and sometimes the down's are super overwhelming...there is so much comfort knowing so many are lifting us up in prayer! I had phone calls, emails,messages on this site, even both of my kids teachers...I got an email from Hailey's and when I was volunteering the other day at the school Hunter's teacher came up to me and told me that Hunter asked her if they could pray for Hudson and all of those who have Mitochondrial disease, she told me the whole class prayed per Hunter's request. I had tears well up...so cool to have my kids go to school and get the love, prayers and support from teachers and classmates!

Games are over...little Hudson was taken out of the high chair after the 11th throw...don't know if it was flukey or on purpose but I tend to think there is a little boy  in that seizure body, trying to interact...God bless him for trying so hard!

Hudson's Candle

http://www.gratefulness.org/candles/message.cfm?l=eng&cid=9225758
(click above for Hudson's candle)

Quite an emotional morning....lots of reflecting, praying, tears. Right before 10:00 a.m., Hudson had a biggie, he cried out and I ran to his side and after he was done seizing I left him to recover....to get a lighter and candle. I  sat next to him and he was passed out just like so. I don't mean to be dramatic, I plan on doing some "happy" posts, it's just the reality of this disease and that fact that Hudson suffers so greatly from it...it just is really tough,  and I just despise Mito disease and all it does to my baby.

Heavenly Father....I pray for all the families who suffer in some form from this disease...parents, children, grandparents, brother and sisters...it is the entire family who feels the pain,as the effects of this disease ripples through these families. For those who are inflicted with Mitochondrial disorder, Lord I ask that you bring peace and comfort over them today.I pray for those doctors and scientists that are researching this disease, that You will lead them to find a cure so that no more lives would be lost.  I pray for all those who have gone home to You, who no longer endure the suffering of Mito...I pray for their families, their loss and Your peace over them today and always.
I pray that Your healing hands would touch the life of Hudson and he would be delivered from all that has been placed before him, that You would use him as your vessel, and that ultimately Hudson's life would bring You glory. In Jesus Name I pray....Amen.

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.