Monday, January 5, 2009


So it's Monday and since Sarah is on vacation I am working away. I like being busy though because it makes the day move much quicker. This weekend was a nice break from everything, and as I stated before it was great being with the family. Jude did have another bad seizure last night, and his whimpers still break my heart. We increase the dosage of the topamax today so we will see if that changes the seizures at all. So far it seems nothing really makes a significant difference. The only difference the topamax has really made so far is to completely wipe out Jude's smile. So the one thing we truly held on to is now gone because of the medication. I was telling Mike earlier over the phone that I heard a discussion on John Travolta's child this morning. I knew the debates were coming because of the media's thirst for gossip. They stated they had taken his son off anti-seizure medication, or had reduced the amount. So of course people were having political debates regarding their religion, etc. I had a couple of thing to contribute to this.

1. Hey media Now is NOT the time people! Gees let a family grieve already.

2. No one truly knows their situation unless you knew them personally, and I don't think any of us do. We don't know which medicines were prescribed for when, or how serious his situation was except that he had disabilities.

3. I can reasonably see deciding to take a child off seizure medication because it suppresses their cognitive abilities. So if the medication is not helping... which is worse the medication or the seizures? If you have done enough testing on and off and it's the same either way.....I mean seriously. I know if it were me personally I would prefer to be able to feel and communicate vs feeling like I was on mag sulfate all the time IF the medication was NOT working. Seizure medications are sedatives that are there to relax all the nerves in your body, etc.

4. Again we don't know what happened, what's going on, etc. I think we sometimes make assumptions about other peoples life and lifestyles when we really have no right to because ........ we just don't know. We only think we know.

Anyway, we have a very full week this week. ECI is coming out today to talk with Mike about the therapy they will offer in home for Jude. I am waiting for him to call me back to explain everything they will offer, and at what times. Tonight Em has gymnastics so she can try to improve that back flip of hers. She loves gymnastics, and that is a class I will work on her keeping through this crisis because it keeps her life normal. Tomorrow Jude has a pediatrician appointment because our normally non cranky baby was not happy last night, and was tugging at his left ear again. With Jude it's important to keep him healthy because infections/sickness can bring on more seizures. Wednesday Jude has music therapy at Gymboree which we all know he loves loves loves. Then Thursday it will be clean the house day because my family is coming from Springfield this weekend. So I will keep everyone updated. I would love some prayers though that Jude's smile comes back because I miss it.

1 comment:

da momma said...

praying for a smile for you! I found you through Sarah Miloud and I have you on my prayer list. Jude is such a beautiful boy! You are doing a good job mommy! God wont give you more than you cant handle and your strength encourages us who are praying for you! Bless you!