Wednesday, December 31, 2008
I'm looking forward to a new year. I'm hoping for less Dr. appointments, more quiet time (ha, ha, I have 4 kids) and general new beginnings. Who know what 2009 will bring.
We're party-poopers tonight. I worked today and I work tomorrow. I'll be ringing in the new year in my jammies, hopefully sleeping in my warm bed. We were supposed to go to a friends house tonight and party, but, well...I hate to say it... but as good of a day as Matthew had on Monday, he had an equally BAD day yesterday and today has been full of seizures. :(
It seems like we have good days and bad weeks. So I guess I'm hoping 2009 brings good weeks and occasional bad days, versus good days and bad weeks.
Tuesday, December 30, 2008
A couple of things to note. Yes, my livingroom is a mess. We hadn't cleaned up from the birthday gift unwrapping explosion, and the "I'm gunna through everything around the house as soon as we get home from eating" explosion. Just good raw video :)
2nd- Watch him aim and hit his toy. This is something I don't think we've EVER seen him do. I believe his vision seems to be getting better. Andlook at the smiles were getting! They're coming back! And we're seeing a ton of them in the last couple of days.
3rd- my cat gets annoying at the end and I have to quit taping!
4th- you may notice Matthew's face seems a little 'twitchy'. We've noticed an increase in this in the last couple of days. We (and the neurologist) think that it is due to us weaning his phenobarbitol and that it will hopefully get better as his body adjusts.
And lastly, weaning him off his med's (we're down to 5!!! yea!!) has not proved good for his sleeping ability (look at the time of this posting)- He very RARELY sleeps during the day and at the night isn't promising either!
Monday, December 29, 2008
Monday, December 22, 2008
Wednesday, December 17, 2008
Here he is sitting in his special tomato chair. He really favors his right side.
Here is a stocking I just finished knitting for a gift. I had a lot of fun with it. I think I'm going to try to knit at least 4 more for the kids for next year. I think I may put their names in there as well.Matthew is now up to his full dose of Depakote and we have weaned him off of his Trileptil. The pediatrician called today and said most of his labs look okay and his depakote is at a therapeutic level. I will call Childrens in Minnesota tomorrow to see what they want to do and if we can start weaning off the phenobarbitol. We are down to 7 medications and realistically hoping to get down to 5 soon. I 'think' the depakote may be helping some. His OT today thought that he looked calmer and more relaxed and she also thought it seemed as if he was having less spasms. It's hard for me to tell, but I think it's better. He does seem more alert and more vocal; we're also starting to see some more smiles and I think he's starting to focus on things again. So we're hopefully going in the right direction.
Matthew has slept through the night now for 5 nights!! Yeah, mommy is getting some sleep!
On a sadder note, Steve went to work today to find out that he did not have a job anymore. This may make things a little interesting for us, but thankfully Steve had some vacation time that he will get. His boss did not think he had to pay him that, but after I informed him that I had called the Nebraska Department of Labor legal authorities and that it would be illegal for him to do that, he seemed a bit more willing to pay him his owed vacation :) Things at Steve's work have been a little touchy for some time, but we were quite surprised that he would let him go 8 days before Christmas. Steve worked for his friend Bart, today and tomorrow will start his job search. We are excited about what better things God has in store for him. We are claiming Jeremiah 29:11 'For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Steve is a hard worker is faithful to his employer and his customers, so I'm sure only good can come from this.
Prayers for a speedy job search are appreciated!
Wednesday, December 10, 2008
Wednesday, December 3, 2008
It looks like my last good update was on Saturday. Now Friday Matthew slept most of the day, but Saturday he was awake almost all day! He made up for the day before. My cousin Sara, her friend Ellen and I spent the evening with Matthew after we ate Cosetta's (a super good italian deli withing walking distance from the hospital). We watched Elf and marked Matthew's seizures on the EEG. See he was video'd the whole time he was there and also he also had 24 EEG hook up so they could coorelate seizure activity with what his body was doing.
Sunday the Dr. Doescher came through and said now he thought that Matthew probably was having infantile spasms. He wanted to give the Keppra one more day and he upped his Trileptil. I did not see any changes in his spasms the whole time. My cousin took off around 3 pm and we spent the rest of the day, well, lounging :)
Monday the neurologists switched call and Dr. Ritter came to see Matthew, but not until 6 pm. He said he hadn't had much time to go through Matthew's scans, but he wasn't sure what Matthew was doing. He needed the rest of the evening to go through his EEG's. All he did was stop his Keppra. He also had said not to worry about coming home anytime soon. He thought we would be there for a long time. He also wanted to have a phone conference with Steve so he could be in on the 'action' and decision making.
Tuesday around 12:30 we had the conference. He said he has a better picture of Matthew neurologically. He said there was alot of activity, but believes there are some infantile spasms, but a lot of things that ARE NOT infantile spasms or seizure activity. As he talked to Steve and I, he was like, and you can still go home today or tomorrow. WHATT??? Yesterday it felt like he told me to move in and get comfortable and today he says go home! My flight had origionally been scheduled for 5 pm, but I had canceled it. And it was now 1:30!!! So I called the airlines and they reinstated my ticket, and then had to find a ride to the airport. I called a taxi and they would pick me up at 3 pm. It was now 2 oclock. I hadn't even started packing! So I threw things in bags and got dismissal instructions, said my goodbyes, and was off! My stomach was in knots. That was very stressful! But, we made it to the airport in plenty of time to get on the plane and go home.
Now, I was a little bummed that it didn't feel like we really accomplished anything. We do know that he is having infantile spasms, and that the Keppra does not work. We did get a plan however. There are no quick fixes unfortunately. The couple of things that work quickly did not work for Matthew. They gave us a 10% chance of curing Matthew's spasms. They did however give us a 70% chance of making things better.
ACTH - a common drug used to treat infantile spasms has not been a drug that all 4 neurologists want to use, at these not 1st. Dr. Ritter stated it would be kind of like standing at the side of a raging river. People would tell you that you have a 3 % chance of making it to the other side of the river, but a 5% chance of drowning in the process. Would you try to cross the river?
Statistically, 3% of all infantile spasms that are symtomatic (that is what Matthew has) are cured with the high levels of ACTH, but 1 in 20 die. YIKES!!! I'm not willing to take that risk, as of yet anyway. Idiopathic infantile spasms have a much higher cure rate with ACTH, but that is not Matthew's type (ideopathic simply put means no reason for them.- Matthew's has a brain disorder, which puts him at risk for seizures)
So where are we now? We started Depakote and will wean off the Trileptil ( Dr. Ritter says trileptil can actually make infantile spasms worse.) Next we will wean off phenobarbitol and perhaps start Felbitol. There is a list of about 5 medications we can use. We still may need another trip to St. Paul, but we'll see. For now, we're hoping that the Depakote works.
That's all for now; I may update more later ( or I may not ) :)
Tuesday, December 2, 2008
- Matthew and I are home in Nebraska
- Matthew appears no different than when we left
- ... But, we do have a plan!!
I'm tired, no EXAUSTED and don't have the energy to go into detail tonight and we have to be up by 5:30 tomorrow for a all day CDC (children's development clinic) appointment in Omaha tomorrow that starts at 8 am. Just wanted you to know that I'll take my laptop with me tomorrow and get everyone caught up. I do think this trip was worth it; just not the results we were hoping for, but hoping that by Christmas we'll have some improvement.