Topamax ween

Somebody opened the door and let that stupid stomach bug in the house!!! Dawson woke up last night at midnight and threw up in his crib... Then again at 12:30 except this time it was all over mommy. After a couple of showers in the middle of the night everything seemed fine.

Today he had a diaper blow out and then another little vomiting session this afternoon, both times all over Grampy. No fever and he seems to feel OK so I don't think its THE stomach virus but obviously hes got some kind of little intestinal thing going on with him. Poor guy, just as he gets over one thing he catches another.

SOOOO the big news is that we have started to ween Dawson off of his seizure meds. This was requested by his Neuro a couple of months ago and after A LOT!!!! of prayer time from us we KNOW this is the right thing to do. He has been on a combo of drugs called Lamictal and Topamax and for those whom might think we are crazy for ever considering taking him off of seizure medication, I can only say to you that God has been speaking pretty clearly to both of us to Trust him, and act in complete faith. And with that has come an indescribable peace that is far beyond explanation.

When Dawson was diagnosed with this horrible seizure disorder at 2 months old, we placed him in the arms of God and prayed for healing. But we also prayed that above all his complete will would be done in all of our lives regarding this situation. I think its pretty safe to say he has done some amazing things in our lives since that day. I had somebody at work ask me if I was afraid and I was reminded of a verse that tells us that fear is not of the Lord. What do I have to fear?? regardless of what happens to Dawson tomorrow GOD is in control. Knowing this, what do we have to fear?? I only wish I was strong enough to act with this kind of faith regarding other areas of my life. I am pathetic and weak ... but God is working on me.

So we stopped the Lamictal dose back in December and Jan 1st we started a very slow ween of the Topamax. He was taking 30mg in the morning and 45 mg in the evening, and as of today he is taking 15mg in the morning and 30 mg in the evening.

And the coolest thing about this so far..... with every decrease in Topamax ( affectionately named Dope-a-max) because as far as I can tell it numbs the brain, we are seeing Dawson's TRUE personality with each decrease and we LOVE IT!!! Its as though we are getting to meet him for the first time because of all the meds hes been on since 2 months old. His speech grows leaps and bounds now and he is so happy. He will stand in front of you and just start laughing. The more he does it the more he cracks himself up and you just tell he is totally enjoying not having so many meds working in his brain.

We started at three months injecting him with an extremely powerful steroid ( ACTH) which transforms your lovely little infant into a swollen, ravenous, fussy monster.

Then we started the Keppra ( affectionately known as Kepp-rage)

Next came the Vigabatrin. This one actually made his seizures worse and has a side effect that can cause permanent peripheral vision loss.. Lovely!!

Then came the B6 therapy treatment. This was non evasive but did nothing to help either.

Next came the Topamax ( Dope -a- max) which we've already discussed.

And finally Lamictal. Side effect to include a rash that can potentially be fatal. Nice!!

So we are excited to see him getting to be himself. His true personality,unadulterated by all these meds. So we wanted to make sure our family and friends knew where we stood with the weening of the medication. Thank you for your continued prayers as we continue or journey of faith. Oh and by the way....... today he has been 246 days seizure free. That's over 8 MONTHS!!!

Praise be to God!

Jeff and Allison

moving right along

Dawson is feeling much better these past few days and finally all the snotty noses have dried up. This week has really been a great week for him as far as speech development goes,as he has been spitting out new words left and right. Another really cool thing this week has been his ability to follow directions given from us. For example, " Dawson, can you go to the playroom and get your pacifier?" " Can you go give this to mommy?" " will you pick that up please?" and if he doesn't want to do it he will shake his head and tell you no, but you can tell he really gets what were telling him and its just so cool to watch him " get it." Yesterday morning when he woke up the first words out of his mouth were " bite bite." Poor kid was hungry and wanted something to eat.

We are so pleased with his continued development and as mentioned before we just don't take anything he learns for granted. To most everybody these things are just normal things kids do but to us... well, its just so much more than that!!

Our love to all and thanks for your prayers!!

Jeff and Allison

yes were still here

The kiddos have battled through the latest round of head colds and other stuff. Dawson still has a little bit of post nasal drip, but it a lot better than than the runny nose he's had for over a week. Actually runny nose just doesn't do it justice. It was more like a sprinting nose. It was hard to keep up with but it seems as though its under control now.

He continues to progress well and we continue to be amazed at this kids development. We are still seizure free and no developmental delays. Last night he would disappear into the kids playroom and would reappear in the den with a roll of lifesavers in his hands. He brought them over to me and said his version of " thank you." I opened them and bit one of the lifesavers into little pieces and gave it to him to munch on. After eating that one I did the sign for " all done", he did it too and walked away. Moments later he re-emerged with yet another unopened roll, handed it to me, said " thank you" and off we went again with eating another lifesaver. It was funny and it was great to see him using some problem solving skills. All done with this one..... No problem, I know where more are and I will go get them for you to open for me... I love it!!!

He learned a new word the other day ( kitty) but he would never say it for us. Only for the grand parents. Well, last night over at grandmoms she showed him his book that has a kitty in it and he finally said " kitty " for us. Its these type of things that make us so grateful and proud. We take NOTHING for granted developmentally with him ,and we are just in such awe of God who has given us this miracle.

He, and all the other kids, are doing just great and once again we want to express our thanks for all your kind words, thoughts and most importantly.. prayers!!

We love you

Jeff and Allison

Sick again

The sniffies,snotties, and snuffies have managed to find their germy way back to the kids again. Madison has not had too rough a go of it but yesterday and today seemed pretty bad for Dawson. You can just tell he does not feel well at all. Last night he woke up about 3:30 screaming and crying. It took a while to get him settled and even that didn't last very long because he was up and down fussing the rest of the night. We hope he gets back to regular form here real soon. Every little thing makes him cry and he is very very clingy.

The kids probably picked this bug up at the Doctors office the other day ( which leads me to the next portion of the blog)

We have been talking to his Pediatrician and Neurologist about starting to get him caught up on his shots. He has not had any since he was 2 months old. Both Allison and I have been very adamant about getting him caught up on our terms and we have come up with a schedule that we feel good about. We are giving him one or two at a time over a period of time and the goal is to have him caught up by the time he enters Kindergarten. I know that seems like a long time to get him caught up , but once again , its what his Doctors and most importantly US feel good about.

So last week he and Madison both got their second flu shot boosters and we started Dawson's shots. He tolerated it well and other than bringing home this bug hes no worse for the wear. Madison was a completely different story. She sat right up there on that table and acted like we were trying to hack off her leg with a rusty bow saw. It was terrible and I must admit that I had no idea how strong a 4 year old can be when they thing your tryin to kill them.....

Thank goodness she is done with shots this season.

So were in a holding pattern hoping the kiddos get back to their old selves again..... and hoping WE don't get it

We love you all and thanks for checking in on us

Jeff and Allison

Post haircut pic per request

Drinking some juice and sporting his new haircut. We hope everyone has a wonderful weekend

First Haircut

This evening we took Dawson for his very first haircut and we are glad to report he did just fabulous. He sat up there like a big boy and never uttered a word of dissatisfaction. You just never know what your going to get when you try something like that. I guess it helps that it was getting close to his evening nap time ( which explains the stoned look on his face) We just wanted to share with you guys. The video was taken with my cell phone so sorry for the crudeness of the video but you get the picture ( no pun intended)

Thanks for stopping by

Jeff and Allison

No news is good news

Things still the same around here. Dawson is trucking right along with no seizures. We have been 221 days with no seizures and yes we count each one, and thank God for each and every minute of each and every one of those days. I guess the biggest change over the last few days would be his language skills. They seem to be blossoming right now. His newest words he is trying to say are " thank you", "welcome", and " juice ". He is also mimicking a lot of different sounds that we and his sisters make at him.

He enjoys playing with all of his toys as well as anybody elses he can get his hands on. He will spend some time in the play room playing and then walk his little self in here with us and play for a while. He is always in the best mood unless he is hungry or sleepy. And speaking of sleepy, he has been sleeping better the past few weeks at night as well.

The other night he was really cracking us up. He had found a balloon and brought it in here with us and was trying to pop it by sitting and bouncing up and down on it. Of course about every third bounce the balloon would slip away and Kerplop! right on his bottom. It was a fun game to him and he really had us laughing for a while. There is just no telling what he is going to do next.

So that's what we've been up to the last few days. Lots of smiling, laughing, playing, pulling sisters hair every chance he gets, chasing Madison all over the house and now that we've mastered walking........ He is trying to run..

We are in just pure bliss right now watching him grow and do all these new things.

Thank you for sharing in our joy

We love you all

Jeff and Allison