Jude had a pretty bad seizure last night, and was just exhausted afterwards. Mike had ran to the store so I was alone with him, and it just broke my heart. Jude was putting his little lower lip out in between the cluster seizures, and would let out a little cry. I kept reminding myself that they normally don't remember the seizure afterwards. After the seizure he fell fast asleep although he did wake up later that evening and played with us some more. He talked to us and was just adorable. I was in the bath talking to Mike who was in the bedroom, and Mike said Jude kept getting irritated because he couldn't find me. He was looking around the room and grunting. So he would bring him into the bathroom and Jude was bright eyed looking at me very quiet. We read more on the diagnoses that Jude was given, and it is rather frightening. Although, we have decided not to shed anymore tears though over what MAY happen. We are focusing on the future. Mike has sent me several messages today telling me how Jude is doing. I wish I could be the one at home, but Mike is such a good dad! We will find a way to keep him there if possible so Jude always has a parent with him. His next appt with the neurology center is in 6 weeks unless something happens before then. If the phenobarb doesn't work they will switch him to topomax. I heard the side affects can be a little more severe with topomax so I am hoping what we have now will work. I feel like it has been an entire year of doctors with the difficult pregnancy and now this. I guess if I step back and look it really has been. It is draining, but on the other hand I have learned so much.
Oh and for your enterainment this is the audacity of some people in the world. We have a rather "difficult" client and by difficult I mean he is a professional ass that with my luck only likes to deal with me. Well he called in while I was out the other day, and Sarah was helping him. Our computer systems were down so she was not able to take his payment at the time, but offered to call him back. He threw such a hissy that she directed him to the corporate office. He threw such a hissy with them over the late fee he didn't want to pay ...he is always late that they called our office to complain about him. He then called Sarah back again demanding to talk to me......this is that conversation.
Mr Jerk: I want to talk to Jennifer now!
Sarah: Well she is not here, but I will be happy to help you as soon as my system comes back up.
Mr Jerk: Well it must be nice for her to make all that money {ha}
Sarah: She is in ICU with her baby and isn't able to be here
Mr Jerk: Well sounds to me like she should get back to work to make money to pay for the medical bills.
Sarah: click ~ hung up
Mr then called back this morning yelling again and demanding to talk to me. Sarah explained I was on the other line helping another customer. He was rude once again saying I just didn't want to talk to him, wasn't ever here, etc etc. All untrue items, and then Sarah went off! He then said he didn't care at all about my son being sick. So my sweet boss is waiting on him to return his phone call so he can tell him to take his insurance elsewhere because he won't have people treat his employees like that. So a BIG hug and thanks to Sarah and Tim!
By the way several people have asked how this happened. They determined that Jude had an in utero stroke around 18 weeks or before and his brain never developed right. It just happens sometimes. 1 in every 4000 births is afflicted by a stroke just many don't have this severe an outcome, and some are worse.
Here is some pics from the hospital.
We just got the news that baby Jude gets to go home!!
I am all bundled up! It was warm when we got to the hospital, but now we hear it's freezing.
We are home, and my daddy takes good care of me. Daddy looks pretty tired though so mommy needs to take care of him.
8 comments:
I'm from JM site and came across your blog. I read your entire blog in 2 days and let me tell you it broke my heart! I've wanted to comment but to be honest, I really didn't know what to say. I do know that since I have found your blog I have Prayed for Jude and your family and I will continue to Pray every night for you all. I can't imagine the roller coaster you've been on. The reason I am commenting today is because I noticed that they may be putting Jude on Topomax! My son Bailey was diagnosed with epilepsy April 03 and was having up to 100 seizures a day.(we also video taped the episodes and showed our family Dr. who set up an EEG appt.) They were quite minute as he would twitch and then after have a quick roll back of the eyes. He was put on valproic acid which totally made him a walking zombie. He ended up having a gran maul off the valproic acid. The on- call neurologist jumped the gun (long story) and put him on topomax! Well this ending up being a god send for us. Bailey was himself, not a zombie at all and was not having any visable seizures, thank the lord! His next EEG in Nov 03 showed no activity so this was the start of our 2 years of medication to see if he could stay seizure free. HE DID! Meanwhile he started Kindergarten and was having lots of problems. We thought he was just not wanting to learn. We could make him write the letter A 50 times, turn the page and ask him to write the letter A to him replying, "what is an A?" It boggled us! Well he slipped by onto grade 1. Half the year through grade 1 (Nov. 05) we started weening him off the topomax. And slowly but surely he started comprehending things. The alphabet clicked, he could start reading, he wrote 1-100 on a piece of paper like nothing! We were floored as his teacher was! By March 06 he had pretty much caught up with the rest of his class...only about 3/4 of a year behind instead of 2 years! I talked to his neurologist who then informed me that topomax tends to staul a persons learning! So in other words, Bailey never lost anything he had learned prior to the topomax but didn't learn anything new, his brain just wouldn't allow him! (well duh, thanks for the heads up) He is now in grade 4 and doing well...still a lil' behind but nothing to worry! Before we weened him from the topomax the EEG showed brain waves to which seizures could occur but we would never know unless we took off his meds! So far so good, he's been weened for 2 full years now and no signs of any seizures (knock on wood)! So what we thought was a "god send" because of his alertness and no seizures, ended up delaying his learning! If only we would have known that this medication was the cause of his learning delay, it sure woulda helped us the 1st year and a half of school! I just wanted to give you a heads up on the meds, it did prevent the seizures from happening and that I am grateful for!! From reading your blog I know you do tons of research as I "thought" I did too, but this was one thing that wasn't mentioned anywhere. (unless I missed it from countless tiring hours of googling) If you have any questions you can email me at chazzy22_2004@yahoo.ca or PM me on JM...I post in the July 07 PR under the user name hockeymomto4boys....God bless you and your family, I admire your strength as I understand at such a difficult time it's sometimes VERY hard to muster!! Give your Precious Jude and Emily an extra snuggle tonight from Me, my husband and boys!!
P.S...I hope that all made sense ;)
Extended hugs, Corene!
Thank you so much for the heads up. I have heard some scary things about topomax but I had not heard that one. I know the seizure is more imporant than the meds, but still it's scary. Jude's little eyes look so glassy from the meds already so I hate to add to it.
That client is such an ass. I am happy that your boss is doing the right thing and not focusing more on just making money. I know any boss can be a pain sometimes' (believe me, I've had my fair share) but I am really glad yours is sticking up for you like that.
One more thing:
1. Why are people so sleepy after having a seizure?
Your welcome hun! As much as i am thankful for the seizure meds, I agree, they scare me!! The valproic acid made my happy rumbunctious boy into someone I didn't recognize. He was up for maybe 6 hours total during the day and when he was awake he sat there almost in a comatose state. It was so very sad to see. Maybe because Jude is so young the topomax won't have the same reaction it did on our Bailey. He honestly was back to the "normal" lil boy we knew! If only it hadn't delayed his learning I would definately label it as a miracle drug for seizures. Anyway, It's definately something to question your neurologist about!
Corene!
There are scary side effects with most medications (and seizure medications are no exception). Actually, as far as most seizure medications go, Topomax is one of the most benign. I know of several kids who had tried many different meds but only became seizure free after being put on Topomax. The side effect Corene mentioned is why they sometimes call Topomax "dopomax". It does NOT prevent learning. It causes a delay in speech and language recognition, all of which come back as soon as they are taken off of it.
Jennifer ~ Because you can compare it to a huge work out when you burn a lot of calories. Which is why Jude is a tad thin because he drinks a ton, but the seizures burn it right back off. Its just hard on your body.
Im praying for Jude. I also had a stroke in utero and I was scared my son would also have one but didn't. Keep your head up. Its hard. I am 21 now and doing well. If you need to talk im here. =)
Look how much Jude has grown! I love seeing the pics! You can never have too many pics!
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