Thursday, March 5, 2009

Two steps back

Sigh, not so good news.

Let's start from the beginning. When I got home last night we went out for a bit, and Jude became very restless. He started crying which is unusual for him, and his eyes looked terrified. So I got him out of his car seat, and held him close to me wrapped in his blanket. This seemed to settle him a bit, but for some reason he seemed very scared. I thought maybe it was the noise, or lighting where we were at, but I am still not sure. It again could be the withdrawal of the pheno, him cutting teeth, maybe his tummy hurt, etc, you just never know with Jude. All I can say is it's very rare when Jude cries, or seems upset unless he is seizing so we knew something was wrong. Once we got home Jude started seizing which could have been brought on by whatever was bothering him. The bad part is Jude seized off and on the entire night and morning. I am exhausted! Mike said when this happens he always feels like he lost something. We get a reprieve for a day or two, and we think whatever medication he received is working, and then the dreaded seizures start again. We still have confidence in the new doctor, and believe with time we will find the right combination of medications.

So last night when we got home I was taking some pictures of Jude in his rebel baby onsie my sister got him. I LOVE the outfit, and right in the middle of my picture taking Jude started seizing. I have mentioned over and over that I would like to eventually post a video of Jude's initial subtle seizing movements so parents researching IS will know what they look like. I probably won't ever post the seizing he has now which are in the pics below, because even though the photo looks like it's not much it is. He screams, cries, and jackknifes during the episode, and it's hard to watch. So I did want to share some of his movements through these photo's in case it helps someone researching on whether they should take their child in. I have received messages from parents who have read my blog who have wondered if what they were seeing in their children were seizures, and unfortunately they were. I hate the idea that anyone else would suffer through this, but I am glad they got their children the help they needed. Keep in mind guys that parents don't research seizures unless they have a good indication that is what they are seeing in their children....so don't worry unnecessarily that something is wrong with your child. What we are dealing with here is rare so again don't worry. These pics show the seizure just starting.

Seizure flexing:
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Relax:
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Seize:
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Relax and he is upset:
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So as terrible as they may look or seem we are thankful Jude gets a relaxing break in between his spasms. I cannot imagine if they lasted 17 mins or more with a constant spasm. Be assured that little Jude stopped soon, and we cuddled him until he fell fast asleep.

I think I mentioned that I am having a huge garage sale on Saturday. What started as a way to earn some extra money to go away for a weekend, pay some medical bills, etc has blossomed into a multi family event. I have had several people drop off items letting me know they would like me to sell them, and keep the funds. All of them have stated how much it helps them in clearing out their house, and they don't have to mess with a garage sale, and how it will help me too. Very nice! Thank you guys. So my dining room looks like a gigantic resale shop. I will be busy labeling items again tonight, and getting everything ready. My new found wonderful friend Fleck is coming over to help me control the crowds. I was told by the city when I applied for the permit they only allow one sign in your front yard. I have NO idea how that will work so I may cheat and put some tiny signs on metal stakes. I was told by a police officer I know that the big issue is they don't want signs attached to street signs, or light poles but if you put just a few out on your own stakes they normally let it slide. I am hoping this is the case, and I also advertised on craigslist. Awww craigslist a thrifty shoppers dream.

Well have a good day all. I am running on no sleep so I hope my blog makes sense today.

3 comments:

Bird said...

Love that onesie! That's one stylish baby you got there.

Mara said...

oh jenn- I am so sorry to hear about your night ! You are in our thoughts and prayers and good luck with your garage sale !! I'lg give you some stuff if we lived closer : )

andrea said...

i wish that jude didn't have to go thru everything he is dealing with at such a young age. he is such a champ. tomorrow is no seizure friday :)!