Friday, August 31, 2007

It's Official

We are getting our delivery today for ACTH and the supplies we will need to start Daniel next Tuesday. Makes me sick. I don't know if we're making the right decision. I mean I know I want to stop the IS seizures. But what if giving him the steroids harms him in another way? What is some horrible side effect pops up and we lose Daniel........and we did it because he was having some seizures. We are in a no win situation either way.

So the company says we don't need to be home when the supplies are delivered that they are coming by UPS and that we don't need to sign for anything? ARE YOU KIDDING ME?? If all the vials are in there that is close to 100K in medicine and you're telling me you're just going to leave it at the door? ARE YOU NUTS?!!

We will have someone posted outside the door to grab it! YIKES! can you imagine if someone stole that and tried to resell it? They could make a nice wad of cash there eh ?!?

On a better note, we are driving to pick up Brittany from college for the weekend. We all miss her very much!

Wednesday, August 29, 2007

Things Aren't Getting Any Better on This Home Front!

OK, so if you've been following you know that were are scheduled to start ACTH this week, but because Daniel has a cold it is postponed until next week.

And this is the GREAT news (NOT!) we just found out. Here is an excerpt from an email from the ONLY company that makes ACTH. It is very difficult to get insurance to cover ACTH in the first place.......and I can see why they are hesitant now. Please take note of the bold red print. Can you frickin believe this? Prior to the 27th of August, would you like to take a guess at the cost per vial? $935.00. Just a tad bit of an increase eh?! SICKENING.

After in-depth review of several potential strategies, Questcor's Board and remaining executives decided that the best way to make Acthar economically viable for the long term, so that patients have a continued uninterrupted supply of Acthar, is to adopt an orphan-style pricing model for Acthar, reflecting the ultra-rare nature of the disease for which it is actually used by doctors. It is important to put this new pricing into perspective. Pricing for orphan-type drugs typically ranges from $50,000 to $500,000 or more per year. Effective August 27, 2007, Acthar is priced at $23,269 per vial. When used for treating IS, this results in an average total treatment cost of around $100,000. In a majority of cases, IS patients are on a single course of therapy and then they are done with Acthar treatment entirely.

-Executive Vice President, Corporate Development
Questcor Pharmaceuticals, Inc

Anyone have an extra large refrigerator box and perhaps a dishwasher box? I figure with enough duct tape We could make a nice two story cardboard box house for us to live in! I've found a site that gives us step by step instructions on how to make one.

We should be starting the building process as soon as I collect enough cardboard! LOL....really shush, its not funny! :P

These are my plans so far!

Tuesday, August 28, 2007

Can You Flippin' Believe It?

What are the odds?

So we go to the hospital, get all hooked up on the EEG (the hooking up didn't go as well as the last time!) There were a lot of tears but at least the man didn't make us swaddle Daniel, he sat on my lap and cried......which is hard cause all I wanted to do was pick him up and put him on my shoulder and tell him we were all done.

So we get all hooked up and they bring us up to a room. Not the single rooms that we normally have been in but we are SHARING a room, with some people that do not care that there is a small toddler in the other 1/2 of the room who is trying to sleep. I made sure that Daniel wasn't loud, that he didn't cry.........I was very respectful of their space and kept the noise level down. They on the other hand did not. So 1/2 way through the night, the nurses decided to switch our room. Not a problem, thank you very much we appreciate that.

So they hook us all back up in the room across the hall. And Lonnie says to the EEG tech person, "That monitor looks weird", (this is the monitor that you can see Daniel's brain waves, normally) And she says, "Oh yeah, its set to low. This way the technician that reads it will see the spikes easier when he has a seizure." Oh OK, well you're the one who gets paid for this, we're just here taking the test. So we leave it at that. Up until the room switch Daniel did not have any seizures, he did have some seizure activity after the room switch at night and in the morning. Which were EXACTLY what we wanted to catch on the EEG.

We did an EEG 2 months prior but there was no seizure activity on there. So that is why we are doing it again, to make sure that Daniel's seizures are indeed Infantile Spasms, if they are infantile spasms we need to start Daniel on ACTH. So we were sad on one hand that Daniel was having the seizures, but on the other hand we were happy that they were being caught on the brain waves and the video camera.

So on Monday, I patiently wait for the Head Nurse from our neurologist to call me. I was sick all day. I wanted the confirmation that what Daniel was doing was either a seizure or it wasn't. And if it was a seizure what type. The type if very important. If its not IS, then we don't have to do ACTH. Each time the phone rang I cringed.........wanting them to be calling but then not wanting it to be them. I didn't know if I could handle the results. I was scared.
So Monday at 4:30 p.m. the Head Nurse calls and said she's had a horrible Monday nothing was going as planned.........OK, that didn't sound good for me, so I take a deep sigh, and say to myself, "It is what it is, and we'll handle it as best we can". In that few seconds of her telling me she had a horrible Monday I prepared myself to join her club of "F'ed up Mondays".

So she proceeds to tell me that none of the spasms were caught on the EEG or the Video. Pardon Me? What? Can you repeat that please? You're telling me that they were seizures?
"No", she says, "what I'm telling you is that the second half of the testing, after the room change wasn't hooked up right, we show no brain waves for Daniel, nothing came out."


Now, mind you, I know its not her fault, its the moron who switched our rooms, and gave us the lame-assed excuse of "Oh the technician likes it that way" Well sure he does, cause there isn't anything there for him to read you Butt Nugget!

UUUGH, so again we do not have 100% confirmation that they are IS seizures, but the Video from the test was still good. So the doctor looked at the video clip of where Daniel was having seizures and after talking to us has decided that in his opinion (he is one of the best in his field) they are IS seizures and that we need to get them controlled immediately. We need to start ACTH. Just what I didn't want to hear.

Well along with that wonderful F'ed up Monday News...........Daniel caught a cold while we were at the hospital, and is not sick..........meaning his immune system is weak right now so we cannot start ACTH until everything is cleared up because ACTH weakens the immune system and a small little cold could turn into a huge big nasty bug. So now we wait, until Daniel gets the OK he's clear on the cold from the pediatrician.

Does it ever end?! I just want to curl up and cry.

Saturday, August 25, 2007

Another Weekend At Children's

Well we are off to another weekend at Children's Hospital for another 24 hour EEG (Video). We just had one in June but they wanted another one before we start ACTH. I guess, from my understanding, that depending on what they see on the VEEG, will determine if Daniel will start ACTH on Tuesday or Wednesday of next week.

Wouldn't it be positively wonderful if they saw no seizure activity, no hyps, and calm background activity?!

I hate doing these VEEG's. Besides the fact that Daniel is tethered (basically with all the wires) to this little area in the room, and he always has to be facing the video camera for 24 hours straight.......they also have a monitor so that you can see all the brain activity. Every time we go to these tests I end up just staring at the monitor to try to figure out what is wrong looking and what is right. Its bizarre to watch when he laughs what it does in the brain, or when he cries, or sleeping. You would think with as many as we have had that I would be able to master these spikes and dips and know what they all mean!

Well, we will keep you posted about what is going on with the ACTH treatments. Cross your fingers.

On a good note, this week, Daniel got the iGallop. Now I'm sure people are thinking "WHY does Daniel need the iGallop?" Well, I will tell you WHY! The iGallop mimics a horse trotting, and a horse trotting is like hippotherapy and since Daniel can't go to hippotherapy because of scheduling conflicts, travel time and age...we got him the next best thing. It wasn't designed for special needs children but I will tell you that among the special needs groups that I belong to, this is the big rave right now! Here is how hippotherapy helps children with Cerebral Palsy (CP). And if that isn't enough of a reason for Daniel to have it, he also loves to ride on it. He is almost ready to do some stunts on it! He tries to get me to lay him on his tummy on here too. He thinks that is a hoot! We will have to post a couple pictures of him next week.......for now we're off to the hospital. Yipee............NOT!

Tuesday, August 21, 2007

My Little Drummer Boy

Daniel LOVES musical toys.

Give him a bell, and he'll ring it.

Give him a keyboard and he'll bang on it, perhaps even sing.

Give him rhythm sticks and he'll hit them together.

Alexandra makes him a drum.......and pa-rup-pa-pa-pum!!!

Now we can't take it away.
Life if good.

Monday, August 20, 2007

A Whole Buncha Stuff...

Well, Brittany is off to college and she is doing fine. We had gotten about 10 phone calls from her within the first 24 hours. That doesn't include the calls to her older sister who is not living at home with us! But that is ok, at least I know she is still alive and doing well. She seems to be hanging tough when I talk to her but I know it has to be lonely too. There were a few melt-downs from different members of the family when she left.

Since the last update, Daniel has celebrated his 2nd birthday with the family.
We were suppose to have a dinasaur theme but I couldn't pull off the cake, so we went with his all time favorite--Elmo. He seemed happy with it. It wasn't exactly how I had planned for it to look. He original Elmo cake that I had planned out, took the head of Elmo as you see here and it looked like it was popping out of gift boxes, but if I had done that one we'd be eating cake for the next two would have fed 130 people. We had a mere 20. So we scaled it down a tad! :) Impressive cake? I think not...
he's last year cake was much cooler. As you can see.....

Anyways....Daniel had fun at his party. He got to hang out with his favorite Uncle "Chic" and just chill. He got some really cool gifts as well, to name just a few, Elmo PJ's, and Elmo doll, and Elmo giggle chair (which is hilarious to see him sitting in), lotsa clothes that he desperately needed, and some additional toys. He seemed to have a lot of fun, well that was he had fun BEFORE he crashed and took a nap for 2 1/2 hours!!
Daniel also had his two year check up, it went fairly well for the height and weight department but went downhill once they started to ask which milestones he had reached, don't they know that you ALREADY know he's behind, why do you have to make me verbally say "NO" 800 times to the "Is he....." questions. Drives me nuts! You see him almost every month, you know what the hell he's doing and not doing. Then I don't need the follow up statement of, "well of course you know he is behind significantly." No??? you don't say? I didn't realize that! Well I'll be damned! Anyhow.......while we were there we had to get some blood drawn, a TB test, and a Urine sample. Now here I am with little Daniel on my lap waiting for the scream when they do the TB test...nope nothing...OK picking the finger and getting blood for the CBC.....Nope nothing, no tears, Nada. Lay him on his back to clean up his diaper area and attach the little plastic baggie over his peeper to get a urine sample and you would have thought the world was going to come to an end. NO WAY was he going to let someone near his privates with iodine and tape a baggie over his jewels! He let everyone in that office know that he was having none of this nonsense! As soon as the diaper was back on and he wasn't bearing his goods to everyone, he was all smiles.......ah life is good! He is a funny little guy!
So we had to get the TB and the other tests to get ready for the ACTH that is possible going to start in the near future. I could really use some advise, the good the bad and the ugly of ACTH. If you're reading this and you've had experience with it, please let me know.
I've been kind of out of the loop and not checking on the other Yahoo support groups that I belong to for about a month. Just so bummed about everything that is going on and so overwhelmed with everything. The follow up with doctors, the follow up with insurances, the follow up with all the different therapies, researching ACTH, having horrible dreams, the inner arguments within myself about what is best, what I should expect from people involved with Daniel. BLAH BLAH BLAH........just sometimes I want to sit here and just scream and then have a really good cry. But I not to certain that once I start, I'll be able to stop. I can say the words, Daniel has Cerebral Palsy, Infantile Spasms and has a brain malformation called PMG. I understand all of this. But when I stop, and sit for a while, and think about it, actually sit there and say "Oh my God, he may never walk....He might not be able to use his hands to use an augmentative device......I then get scared, I get really frightened, for Daniel and for myself. So many "what if's" many things to do and I don't even know where to begin. WHY THE HELL ISN'T SOMEONE HOLDING MY HAND THROUGH THIS CRAP?? What way do I go now? Where do we turn?

Friday, August 17, 2007

Off to College

Its a sad day today. This is my last full day with one of my baby girls. She is leaving tomorrow for college. She won't be home at nights for me to check up on. She won't call me to tell me she is going to be late. She won't be coming home from school this year each day to tell me of the things that happened throughout the day. She won't be coming home telling me she got her cell phone taken away, or that she got into a fight. There won't be any homecoming dances or proms this year. She won't be hogging the bathroom in the morning to get ready for school, at least not at my house! She is going off to college. She is not the only one of my children in college, but she is the only one so far to GO AWAY, to leave my "safety", to be more than 5 minutes away. Ugh, such mixed emotions I am having. She is growing up and for this I am happy, she is moving on and learning to care for herself, and for this I am happy. But she is also leaving me, and for this I am so, so sad. I didn't think I would cry.............

I was wrong.

I love you Brittany, you'll always be my little britter-butt

Thursday, August 9, 2007


I don't even know where to start right now. Daniel is still having seizures, can't get them under control with meds. They aren't horrible Grand Mal seizures, they seem to still be infantile spasms, which in some cases are worse than the big ones. He seems to be having just a few a day, not hundreds, but still they are enough to throw me for a loop.

So the talk is now getting another Video EEG, getting some preliminary tests done and getting Daniel started on ACTH. We are schedule for being 'ON CALL' so if there is an opening for the Video EEG prior to our appointment in September, we are to run immediately there.

Daniel has a sinus infection right now and is on meds for that. Fun stuff, could be why his seizures are acting up. We go back to the pediatrician next week for his 2 year check up and start getting all the extensive testing needed prior to starting ACTH. Very overwhelmed right now, and not handling this new set up information right now. Crying a lot. Very down, but I'll do what needs to be done and hopefully we can get rid of these seizures again.

There are a whole battery of tests that they have to run prior to ACTH, then there is a hospital stay where they teach you how to administer the shots on a daily basis for 6-8 weeks. Have I mentioned before that I have never gone to medical school or given anyone shots before? Perhaps one of the kind doctors will come live at my house for the next 2 1/2 months to give these, and to also do all the tests that need to be done at home every few days.

I have heard, "God only gives you what you can handle" I think he made a mistake when he looked up my name and gave Daniel to me. I'm trying here, I really really am.

I received a really nice card from a woman that I met when Daniel and I went to Grand Rapids for Conductive Ed. Her son Joseph, also has CP but is older that Daniel. He did remarkable when we were there. He actually started walking WITHOUT his canes........walking with no support what so ever. He is amazing. Anyways, she sent me a card with a little story called "Mothers of Handicapped Children" it has made its rounds like the "Visiting Holland" story
but I have posted it to the site in hopes that it can make another mom feel good too.
It was so sweet of her to take the time to mail it to me. Thank you very much Julie!

Tuesday, August 7, 2007

Happy 2nd Birthday, Daniel!!!

Well, just about one hour or so until it's official! Our baby boy is not quite a baby anymore. We created this montage to help celebrate his second year of life. Happy Birthday, Daniel!

Monday, August 6, 2007

Overwhelming Sadness

Well two days, and Daniel will be two years old. Officially a "toddler" who isn't quite toddling yet! But he does get around fairly well in his Pony.

Today is one of my bad days, and I figured ok, lets talk about this, because Daniel's header on his blog does say "....and dealing emotionally and physically with a special needs child"

Well here are some of those emotional and they are quite raw.

Before I fall asleep at night, I always think to myself, ok tomorrow is going to be a good day, I'm going to make sure everything goes right, that we get all the stretches in, wear our AFO's for so many hours, get in the time with the walker, and the stander, make sure he eats well, and also try to get him drinking from the cup instead of the bottle because being on the cup with help with his tongue and speech along with swallowing. I know to most this doesn't' sound like much to do, but some days I am just overwhelmed. Now put into that day they times he needs to go to therapies, travel time, getting in the naps and oh yeah we're also working on potty training. OH CRAP!! Don't forget to brush his teeth too!

Today is definitely one of my days, Daniel is still having seizures. Very sad.

Saturday, August 4, 2007

Oooooooooooh So Many, Many Birthdays in August

Well in our family we have TONS of birthdays to mention. So I figured it being the beginning of the month I'd just hit everyone of them up now. So for the August Birthday Crew...

So Happy Birthday to you, Happy Birthday Dear Daniel, Nicole, Caitlin, Pat, Greg, Mary, and Ronda. Happy Birthday to you!!!!