glad he's getting better:D

quick update
 

Sorry Everyone,
I have been up with my daughter and grandson today. I really wanted to hold him but he started to have seizures so we kept him in bed and watched him alot. I am really wiped out from the visit and the traveling. I have been on the road since 5:15 this am. I still have to take care of Babybear, change his diaper, feed him, and do his physical therapy, and massage therapy. So my daughter just emailed and I will post her email she can explain things better. We still need continued prayers and there is not many candles lit anymore. So Please lite a candle for my sweet baby Mikey.
http://www.gratefulness.org/candles/...l=eng&gi=Mikey
Becca's post
hey everyone. just wanted you all to know how the day went. we found out that he had a seizure at about 4 this morning and he had three more when we were here. we have found out how to tell when they are coming on and the doctors believe mikey knows as well because he will wake up about 10 seconds before one, let out a little cry and then go into a seizure that last about 5 to 15 seconds. they are not long at all. so he is being medicated for that with a different mediciane again (same one from before). we also found out that part of his brain didnt develope, but this part doesnt do too much for the brain, so it wont affect him a lot. however, they are concerned that it may have affected his pituatary gland, which controls all other glands, which controls growth and whatnot. so they have taken blood to see if anything else (other then his thyroid levels) are high. so we had a visit from an endocronologist today to see what he thought. we found his levels for his thyroid were elevated, that he is hypo thyroid right now. so that is what triggered them to check his mri again and find the malformation in his brain. however, the endocronologist does not believe the pituartary gland has been affected because his is growing normally, both weight and lenght and is also focusing on objects when he looks at them. we will know more in about 7 to 10 days. but no matter what, he can be medicated if they find something wrong, and it will correct his problems (even though he will be medicated for life, as long as he is okay). the genetics doctor saw us again today and explained that his genetics test all came back normal and nothing seems to be wrong in that department! a neurologist also stopped by and said that everything is looking good right now. he is sucking his bottle again and sucking on his binky, also maintaining his temp. so the neurologist seems to believe the infection mikey had/has caused most problems. he said his seizures may stop once the infection is completely treated, then again, because seizures run in my family, they may never stop. but again, he can be medicated for it. we have taken pics today, and he is doing better. i will be creating another montage once we are home. he is a doll face! he was petting his zebra and trying to pick it up today. you cant tell me that he is going to be slow when he is already doing that (at not even a month old!!!) i will update later!
becca

Thanks so much for the update! What a little fighter Mikey is.

I'm still praying for him...............

Thank you so much for the update...I will continue praying for Mikey...be strong little boy and fight for your life. May God bless you.

I am glad he is doing so good. What an improvement we have seen just over the last week. My nephew had seizures and was missing a part of his brain when he was born also and the doctors said everytime he has a seizure he basically has to start over and relearn everything so getting the seizures under control is a good thing and it can be done. They also said when they are that young and missing a part of the brain like that, the other parts of the brain are able to take over. With an adult, I dont think it works as well but with a newborn they said it does. He is going to be just fine after they get that darn infection out of there and I bet that takes care of the seizures too. Prayers are still coming to you Mikey. Keep getting better little man. I cant wait to see the new pictures with the zebra.

Barb,
Thank you for the encouragement. I copied and pasted that Post to my daughter hoping it will give her a bit of encouragement. She sure could use it. Thank you again for posting that.

I lit a few candels for Mikey, keeping him in my prayers.

Great to hear. You all must be so exhausted, I am praying for a full recovery for Mikey and continued strength for the whole family.

I've also seen stories on the health channel about this condition.....it is absolutely awesome that a baby or child can even have half of their brain removed or damaged & the brain will compensate for the loss & rewire itself to function fine!!!...you would never know it...the human body can do some miraculous things!...Thanks for the update again on Mikey...day by day he's doing his own little miracles....

I am so glad to hear that he is doing better. :thumbup:

Tuesday Morning update
 

Hello Everyone,
I have been working all day today so I only just got an update on what is going on with mikey. They are moving him to a regular room and he is starting to eat more on his own. He is taken 35 ml yesterday it was only 5 to 10 ml. The rest he does not eat they put through the feeding tube. THe seizures are not under controll yet, but they are working on that. Now my daughter will be able to stay in the same room as Mikey and she will not have to leave the hospital unless she wishes too. So far today everything is the same as yesterday. And everything is going well. Thank you again for all the well wishes,thoughts and prayers.
Please everyone have agreat 4th of July. And lets make it a safe 4th.
I will give another update as soon as I know anything.

Wonderful news!!! Keeping the prayers going.

Here is Becca's post for Tuesday night
 

good evening everyone. i was just talking to the doctor and this is what i was informed for the night. the neurologist from boston that we contacted finally got back today. he said there was nothing more they would be able to do for him down there (they are doing everything they can up here) but he would recommend having another CSF perfomered on the fluid on his brain. so on friday, they will be taking a bit more fluid. this was due to the levels being very high (protein and cbc). so they want to make sure the antibiotics are working and that its the levels do not continue to increase. so once they get those results (which should be the same day or the next) will determine whether or not he is treated for the full 21 days or so. right now, they are leaning to having the 21 day treatment just in case. also, his cortisol levels were low (which is a gland). so they are not sure if he is producing any. they will give him some cortisol on thursday, and then take his blood 30 minutes later, and then 60 minutes later. if he isnt producing this, then it can be easily treatable with medication. the last thing is that his central line (which is a i.v. that runs in his chest to almost his heart) is not allowing them to take blood anymore, and is becoming sluggish when they give him his antibiotics. so on thursday, they will try to take blood again. if they cannot, they will try to get an i.v. in and keep it in for two days, then try another central line or pedal line ( i believe thats what its called). that line will go into his arm and again will run up it and into his chest near his heart. this line is better and will keep access for up to two weeks. now this is all because if he has to have another weeks worth of antibiotics, they will need a good line to pump it all in. so far this is all the information i have. i wanted to thank EVERYONE who has been so nice to donate money for the family. it is very difficult with mike working and me staying up here. and i know you all realize this. heidi, mom, nana, dad (chris), chris jr., milton fire dept., mike smith, grammie and grampie and many more have donated and it helps. i just wanted to say thank you to all of you!!! i will update with more information at some point tomorrow (unless i get more info. tonight) thanks!!!!
becca

So glad things seem to be looking up for Mikey!!!!

Still saying a prayer for Mikey to keep improving...one day at a time, he'll get better and stronger...please take care of yourselves too.