Sunday, October 25, 2009

Short and sweet

I am really tired of being house bound!
There was an excellent program on Epilepsy featured on 60 minutes; a weekly news program in the US.See link!

Thursday, October 22, 2009

Autism Poem

I found this poem today and posted it on my personal blog... but I thought you guys would enjoy it too.

If you are interested... check out my blog at:

Wednesday, October 21, 2009


The fact that no one has reponded to Melissa post worries me. Where is everyone? I hope doing well and staying out of hospitals! I hope all are enjoying the beautiful fall colors that are surrounding, and getting the chance to crunch some leaves.

I come to you with a serious issue that has me worried. MyJonah has a chronic lung disaes called non CF-Bronchiectasis. If you are familiar with CF its the lung part of the disease that Jonah has. Anyways, on Saturday Jonah was sitting at his high chair and I was sitting kiddy corner at the kitchen table. I noticed he stopped drumming with his rattle and I looked up at him and saw his eyes roll to the back of his head. Then he looked normal again. Since Sat this has happened another 2 time. I didn't think much of it because he has been head banging so much I thought maybe well, I dont know what I thought. Last night I was serving dinner and my husband asked why J was doing that and I dropped the fork I was holding to run to see if J was still doing it. I never mentioned it to my husband before that because I thought it wasnt a big deal. But once my husband saw it , it validated things I was thinking and I imedietly called the home health nurse. SHe came by this morning and of course Jonah did not do it for her, but she said that it is deffinately neurilogical. She thinks he is having seizures. Im kinda freeked! Both of his drs have called to schedual an EEG, now we are waiting to hear back from that department. Has any of your kids ever had a seizure like this, where they just go into a daze then the eyes roll back then they come back too? He does not shake or anything like that. I am so worried. Please let me know if any of this might be familiar to you. I really hope he is not seizing now. How much more can one mom take?

Tuesday, October 6, 2009

Are we all this busy??

I haven't posted on here in a really long time. It has been a wild and crazy few months for us. I am wondering how many of you are feeling like that too?

My family is doing good. Josh has been keeping me on my toes. We have several appointments going on in addition to all his therapy. Then you add in his G-tube placement at the beginning of summer, with all the complications we had.... and here we are 4 months later! Our most concerning problem right now is Josh's lack of sleep. We saw the great Dr. Pfeffer a couple weeks ago and are waiting for a sleep study to be done. I am very tired since he sleeps about 1-2 hour stretches.... it's awful. He moans, whines, talks.... ect. So I hope to get to the bottom of that soon.

I really hope all is well with all of you! I have some of you ladies' personal blogs that I follow, so I know what some of you have been up to. But not everyone. I really hope that you are doing well.

answers about cord blood.

Yesterday we visited the neurosciences clinic at Primary Children's. Our regular Neurologist at Primary's referred us there when we asked her how to find out current and accurate information on the use of umbilical cord blood in treating cerebral palsy.
We told them what we were coming for when we made the appointment, but apparently the Doc didn't get the memo. He was a real nice guy, and took his time in asking all the questions about MK's history, carefully looking up lab reports, and test results on the computer. But he looked like a deer in the headlights when we told him why we'd come. He said that he was just a resident working under Dr. So and So, and that he would run it by him. We waited in the room after that probably another half and hour or so and joked that they were probably 'googling' about cord blood so they'd have something to say to us. The sad thing is, I think we were right. Both doctors came back and talked in circles just restating MK's condition to us and telling us what we already told them, that it seems to be more of an issue of some sort of brain damage rather than a genetic condition....yada yada yada. They really had nothing to say, nor seemed to know anything about cord blood. They gave us a packet they printed out from a web site. (I had to giggle inside myself.)
I got better information about it last week when MK had a check up from another one of her doctors at primary's. I casually mentioned it while we were there. That doctor had just returned from a conference on the subject. She said that she has had numerous patients (mostly with spinal cord injuries rather than cp) who have been interested in cord blood, and many who have even tried to use it. According to her experience, and the information she'd learned at the conference - There is definitely potential there. But the technology just isn't totally ready yet. She said she felt that it would be worth while to harvest and store the blood, but that it's difficult to even put a time frame on how long we might have to hold on to it before the technology is ready. Maybe 10-20 years, who knows?! But she also cautioned - whatever you do - don't go to China or Mexico. She said she'd had patients who had done that, and while she didn't elaborate, she strongly and clearly implied that their efforts were a waste.
I think at this point, we are leaning towards harvesting and storing, but not totally sold yet. We'll be looking into the different companies that do it to check on prices and such. I'll keep you all posted on that.
A big thank you to Ann who left a comment with all the links to blogs and such about it. I've been particularly interested in following Cady's blog, who recieved cord blood for her CP as part of a study done at Duke University. I'll keep watching her progress. Thank you!
In the meantime, it's good to get some updates from some of you. I'm glad we all seem to be hanging in there. Good Luck with Halloween all!