24 EEG

Wow, I just have to announce that I just took a shower by myself with no interuptions and no kids trying to invade my shower time. Yea for me! TMI but I just could not help myself. ha ha

FedEx oh FedEx where are you? You website said my packages were out for delivery at 6:36 am and it is now 6:09pm. I am very excited. Monday I order the boys new carseats. Decided Ava got new carseats when she graduated from infant carrier to foward facing and that the boys should to. Plus Ava excess carseats are getting a little ratty (Ava has3 yes 3 and I only have 2 cars) Anyway, that is what is "out for delivery" 2 Graco Nautilus 3-in-1 Car Seats

I have several friends that have these car seats and love them. There are lots of great reviews on them. I can't wait to get them installed and take the babies for a ride. Oh my 2nd reason that justifies the new carseats is 1 of the 2 seats the boys are sitting in is maxed out. I must be doing something wrong. Jacob does not fit in it at all and Andrew hardly fits. Jacob is currently sitting in a Sun Shine Kids Radion 80. I have 2 Ava still sits in the other. I love everything about the seat except its lack of a cup holder. The 2nd Seat is a Britax Roundabout that was given to me by a friend. He kid sat in it for a long time. I think he was atleast 2 or 3. The babies are 30ish inches and only weigh between 21-24lbs and I have the straps totally at the max and I can hardly get the the buckle snapped without cutting of leg circulation. Oh well...to my point once more...I CAN'T WAIT FOR MY CARSEATS TO GET HERE!!! It is pretty sad when you look forward to a carseat. I guess this is when you know your a dedicated parent lol.

Jacob went in for a 24 hour EEG that started yesterday. If you refer back to a preivous post that was titked Infantile Spasms. I talked about why we felt Jacob needed this study. They hooked him up to all the wires and started the test at 11:45am yesterday. He did well for most of the day considering Jacob's irritability. They did have to call the EEG tech in at 2:30 in the morning to fix his leads 3 of them came off. Poor lady had to drive from an hour a way to get there...oh well, sure she gets paid well to be "on call." Still felt bad though. His neurologist came in to see him last night while I was out. Jack was in the room and talked to her. Per Jack this is what was said: She said she reviewed some of the results from earlier that day when they 1st hooked him up. She said that she seen "seizure like" brain waves, but no actual seizures at that point. She said she was going to increase the doses on his Klonipine and Phenobarb and possibly start him on a 3rd medication. Jack did not know what the 3rd medication was. She also ordered blood labs for the morning to check on his current levels of his medications.

We left the hospital around 1pm today. The only change so far is just a change to his Klonipine. I suppose if she makes anymore changes it will be after she has reviewed the entire test. We had to push  a button and write down anything he did that was "seizure like" in a patient diary thing.

Poor baby was not happy last night. He cried a good part of the night and scratched the crap out of his faces. He still has a hacking cough and has continued to vomit up atleast half a feed once a day. I am struggling with feeding him. He does not want to suck on the bottle. He keeps his mouth open and makes noises or bites the nipple. Not sure if this is related to his CP and that he is loosing the infant suck reflex so he is having a harder time eating vs it just him being sick. Maybe his throat is sore. He sees the speech therapist on Tuesday. I'm excited to go. She has been out for 2 months. I ready to get back in the swing of things again. Not sure I will do the hyperbaric again. Seems like what he did improve on was only temporary anyways. Not sure if it was really worth the time, gas expenses, and effort. Though what did improve was great while it lasted. Wouldn't mind having my own hyperbaric chamber. I would put him in it every day. I think long term use daily would actually help compared to an hour a day (if you are lucky) for 40 visits, whick Jacob ended up getting less than 25 dives due to his ear infection and 6 day hospital stay. :-( Maybe if he had all 40 I would have seen more lasting improvement who know. I talk myself back and forth if I will try it again...:-/

Babies are up from nap time. I suppose I should go get them.

Jacob in his head gear



This was Jacob trying to eat his blanket in his sleep.





Just thought I would share my most favorite picture EVER! This is Ava and Me Oct 08(I think) at Sea World, Orlando, FLorida. I love her smile.