Baking + Me = DISASTER!

With Thanksgiving quickly approaching, I thought I would be creative, and crafty and try my hand at making Pumpkin Fudge. Sounds good/different right?
I had this grand idea that I would make this unique fudge, package it in these cute autumn leave boxes, kind of like Chinese food boxes, that I saw at Hallmark, and send them with the kids to give to their teachers tomorrow, on their last day of school before Thanksgiving.
On Sunday, the kids and I ran to the store to get all the ingredients...it had pumpkin in it, pumpkin pie spice, sugar, whipped marshmallow, white chocolate chips...sounds like a winner huh? Hailey had fun stirring and pouring and measuring. I even made candied walnuts to place on top of each piece...so it wasn't until I was waiting for the fudge to cool that I noticed a problem...the problem was the fudge never really set, it was the mushiest fudge I had ever seen! So I put in the fridge overnight and it seemed better this morning,I was able to cut a few squares, but as it started hitting room temp, it was turning soft again. I made 2 pans of this!!! What was I thinking??? I don't bake, in fact I can't bake...except for my signature chocolate bars I only make at Christmas, I have that one down, but other than that I bake from a box, and a can of frosting...that is my idea of baking.
So, I called my mom over, to get her opinion, to see if they were as bad as I thought, and yeah, she confirmed, I suck at baking...she tried rolling it in a ball...to see if we could turn in into a truffle or something, and rolled it in the walnuts crushed...no good...except for a good laugh between the two of us...all that work and I tossed 2 pans of Pumpkin Fudge in the garbage.
When Paul came home and saw fall candles wrapped in cellophane with sparkly leaf ornaments, he wanted to know what they were for, and I told him they were replacing the fudge that I had made for the teachers, and my husband, who has a HUGE sweet tooth, said "yeah, it was kinda mushy fudge!" That was all the confirmation I needed...I am so happy I dumped it.
Next time I think about being a baker, I will find this post, and remind myself to stick to cooking...I love to cook...and "buy" the baked goods instead!

The other special guy in my life...

Hunter...love, love, love this kid...my first born...I couldn't imagine I could love anything more, or to that capacity, when he came in to my life...and then I had Hailey...then Hudson...and there was enough love...that same kind of love, for all three...my heart just grew bigger, and I love them all for their unique and special ways.

Today, I want to honor Hunter, because I am so very proud of him. Many times he has checked out this blog, seen Hudson's pics, video clips, etc. He has asked me if he could have his own blog, and post videos...of himself... skateboarding...because he is certain he is the next Tony Hawk! He  has asked me to post a video to this blog...of him...skateboarding...or doing something, because he thinks it would be cool to see himself on the computer, in a video....or maybe he would like the same kind of attention Hudson gets.

To know Hunter, is to know a boy who wears his heart on his sleeve, he is a kind and sensitive soul, and most importantly he loves Jesus. Yes, he is a typical rough and tough boy who loves his WII,  Nintendo DS, Le egos... if you were a fly on our wall, you would hear Hunter squabble with Hailey, get too rough with her, and sometimes bring her to tears...but she can also  antagonize him...there are 2 sides to every story, and they have a typical bro/sis relationship. All in all, they couldn't live without one another...and even though they have bunk beds...Hailey crawls into Hunters bed every night and he lets her :)

 A little background.....

The year Hunter started Kindergarten, was the year we found ourselves consumed with the reality that Hudson was a very sick baby, in fact it all happened in Sept. '07, right when he started school, that is when the seizures began, the beginning of this never ending saga. Imagine dealing with all of the unknown of Hudson, at the very beginning stages of his illness, and then hearing from your sons K teacher that your son is struggling, and she is concerned...I mean we are talking Kindergarten people...how hard is that work? I couldn't believe I was having to deal with both of these at the same time. Hudson was my first concern...getting him well...because at the time, I thought we would, and life would go back to normal...little did I know life and normal would never reacquaint.
In short, I had the public school district run Hunter through all the testing, in every area, and they did not see any learning disabilities, or any major issues...he did not qualify for any services. I was relieved. I did get him P.T. and O.T. services after having Hudson's therapists do an eval. and they felt he could use some core strengthening. In the last 2 years we have seen huge changes in Hunter, his work, and his confidence in himself. For a long time I blamed myself and still do ...Hunter needed me at a time when he was going to a new school, new friends, longer days, and I was consumed by his baby brother. I felt absent from what was going on his school life...I was absent...I spent many week in the hospital, and much time running for tests and trying to figure out why Hudson was seizing...I look back and realize just how absent I was...and for Hunter, I am so sorry for that. Hunter needed me too. He was brand new to the real school life- Guilt. I never want Hunter (or Hailey) to feel like Hudson is more special because of an illness, or because I have a blog for him...I worry that they may get the wrong message...all three of them are equally amazing, special and unique, they must know that.

Today.....
Hunter is doing amazing in school. He has a teacher who has very high standards and expectations set for her students, in all areas of academics. She is orderly, and runs a "tight ship."  In the beginning I was worried how Hunter would handle this....boy, was I wrong...she has been a blessing.  The first quarter of school ended and we had conferences this week. His teacher had wonderful things to say about him. For me it is not just about his grades...don't get me wrong, it is wonderful to see him doing so well as it reflects in his grades, but to hear how hard he works in class, how he is proud of himself and the work he is doing, how she loves to hear him read aloud because he uses so much expression, how he takes pride...I am so proud of him...he is working so hard...he is not one of those kids where it comes easy or natural to be an "A" student...he is striving to do his best...which is all I can ask. To be recognized, by a teacher who is known to set a tough standard, it says alot about Hunter's achievements.
The awards ceremony on Wednesday, brought Hunter up on stage, he was honored with the Seal of Distinction Award by his teacher. Miss Hailey got an award too, for Art.

One thing I love about Hunter is he is very humble...today he told me his teacher told the class how Hunter is a "lefty" and that writing cursive can be trickier to learn and she is so proud at how well he is doing and applauded him for it. I asked him how that made him feel, because he should be proud of himself, and he told me he was proud but he was worried how it made the kids in his class feel. That is just Hunter. He also told me his 1st grade teacher left a note on his desk this morning, telling him how proud she is of him, and to keep up the good work...so cool, so encouraging.
I volunteer on Thursdays, in both classes, and when I was ready to head home, I ran into the cafeteria to say goodbye to the kids and found them, both of them, eating lunch with the principal, among other award recipients.

LOVE those 2 faces!!!!

(I think Hunter would love to read any comments you may have for him in the "comment" section...thanks! :) )


Hunter, this is for you...I am so super proud of you and to be called your mom is a honor and a blessing. You are a wonderful person and son, and I pray you stay as loving, sweet and caring as you are today, and that you always stay close in your relationship with Jesus.  Continue to work hard in school, do your very best, be kind to friends and classmates,be humble, and respect your teachers and elders and remember... no matter what you do,in all you do,do it for the glory of God and let your daily life, whether in school, sports, home, friendships... be an act of worship. He will shine through you, and you will bless those around you!

Love you... far beyond the stars....Mommy.

Getting back to life...

Last week we took the week off, which was a break well needed for Hudson as well as myself. I rarely cancel his therapies, so not running last week was huge in recovering from the flu.
Now we are back to "normal"...Hudson's normal...which means we went to P.T. yesterday, Oral therapist was at the house as well, today we go to Children's for a clinic visit with dermatology, get the 2nd seasonal flu vaccine, and pick up prescriptions. Wednesday- O.T. at the house, Thursday- O.T. at the house, Friday -Oral Therapy at the house, swimming at the YMCA. Yes, this is our normal...besides keeping up with Hunter and Hailey's schedules and homework, and having Paul out of town all week...this is us back to our typical week. I hope I don't sound like I am complaining, cuz I'm not...I am grateful to all of the therapists that truly care for Hudson and our family. I have had several call me to see how were recovering, and one special O.T. offering to shop for me, bring dinner, or clean my house! In never took her up on it...because I never want to put anyone out of there way, or admit I may need help...but the offer was sincere, I know that had I accepted, she would have been here. God has blessed us with more than just therapists, and Hudson, I believe, has blessed them as well!

Hudson is doing well...he is still coughing, as he was before the H1N1, I have stopped counting the weeks though...I think he has had this cough for 8 weeks? Poor kid has the thickest mucous draining out of his mouth at times...I seriously can't believe he is not gagging and vomiting on this. With his pukey-history, I am stumped that he has not been throwing up...for months now! OK, I won't press my luck...but nice to have one less thing to deal with!
I want to mention the tamiflu...when we were given the script, I was told there was little known about side effects becasue it has just recently, with H1N1, been used. We were told of one, which was hallucinations. Didn't think much of it, in fact, I will admit I was thinking....if Hudson did hallucinate, would that be so bad? It's not like his reality is that great, right? Well, once we were home from the hospital, I noticed he would wake up screaming, not in a hurt way, more of a  "dream state" or maybe a hallucination? Well, I am thinking so, and apparently it wasn't  too fun, because it happened every night until he was off the tamiflu, and then it stopped...just like that! So, if any of you have to give tamiflu to your kids, just a heads up on the possible reaction!
As per our plan with Dr. S, I took Hudson off the Leucovorin. This is a med to treat behavioral issues associated with seizures, and Hudson was put on it when he was having unconsolable crying jaggs that made me feel helpless and wanting to rip my hair out...he would cry for hours, for no apparent reason, and nothing helped, and he would usually stop crying when a would have a huge cluster of seizures. I was told he could be taken off cold turkey, no weaning, and so I waited until we were compltetly over the flu. I am not sure if it was a coincidence, but he was off for only 2 days, which doesn't seems like enough time to really know, but for those 2 days he started crying jaggs in the evening, for no apparent reason. Not as severe as prior to geting on the med, but the 3rd day I started him back on the Leucovorin, and no inconsolable crying jaggs since! I was just hoping to get rid of one less med, but apparently he may need this one!

Seizures are still going strong...as seen in the last post...about 3-5 a day...sometimes he has what looks like the start of a tonic, but ends up looking like a startle (never holding him tight) but he just cries when this happens, as if he gets scared and is aware of what was about to happen. Poor kid, sometimes I think I could cope better if I didn't have to see him seize every day, it crushes so much hope, it robs us of our son, who is jailed by these beasts...why does any child have to endure seizures...just not right.
That's it for now...

My thoughts on seizures...

Funny how thoughts race through my head....as I lay on my bed with Hudson, due to a splitting headache, I thought about how nice it was to not see a seizure this morning....then I thought, as the ibuprofen kicked in, to take him downstairs and try feeding him, as it has been a week since he has eaten orally. He was eating the applesauce great, as if he was happy that I finally gave him something orally...then I thought the applesauce might  induce a seizure, because sometimes food does that, as it is a metabolic disease, and I thought to listen to the voice that was telling me to go grab the video camera....and so I ran out to my car, because I had used it yesterday for a happier moment, when Hunter's 2nd grade class sang and did bible versus during their school Veterans Chapel. As I spooned another mouthful for Hudson, I grabbed my digital camera.. ready to take a picture...because Hudson seemed so happy to be eating, and in that same moment I thought I should turn on my video camera and have it ready, guess what....... it happened...Hudson was struck...I missed the first few seconds...but caught part of it.
You will probably notice how "junky" he sounds....part of this rattling is due to the cough and flu, and then typically after a seizure it gets worse. Not sure if you can tell, but when the seizure grips him, it seems like he is holding his breath, but the interesting part is that when he was hooked up in the hospital and would have them I would watch his O2 levels and they never went down...I thought that was strange.
Part of keeping Hudson on the nuero's radar, will be if I can get a good video, and email it to him, just to keep it fresh in his mind this battle we face daily, what I see, and any thoughts he may have. I have never emailed him video, but since we don't see him as often, since he got off the study drug Ganaxolone, I figure it is just another attempt to have him be "seen" without an appointment! I have brought video to our appointments and he has always appreciated it and watched thoroughly.
Not sure if this is really *good* enough...I want him to see from beginning to end, but it is so hard to capture and not something I want to wait and hope for.....but today I just got the gut feeling, so maybe I will use it.

BTW............I HATE seizures....just in case you didn't know!