Sunday, November 14, 2010

Jaylie - 11 months 3 weeks - ACTH day 36

Jaylie has been happy and active this week. Jaylie has had a couple of mild seizures but nothing major and even more important, Jaylie is not having seizures on a regular nor daily bases.

Though Jaylie is doing well, she still has an abnormal EEG pattern and intermittent seizures associated with Infantile Spasms. What this means is we need to try another method to bring the EEG patterns and seizures under control. There are several options available to address the irregular EEG patterns and IS (Infantile Spasms) related seizures. The two of options we are looking at are Vigabatrin and the ketogenic diet. Any medication approaches we take to address IS will have serious, some being permanent, side-effects. You can read about all the currently documented medications and treatments for IS here: Infantile Spasms (BTW, this link is the most comprehensive site on Infantile Spasms I have found thus... )

We meet with the neurologist on Monday to discuss the next steps treatment steps we are going to take to treat the IS Jaylie is experiencing.

Jaylie's blood pressure is still high, high enough to be seen several times a week by the Dr's and to have to take two different blood pressure medications daily. Though Jaylie's blood pressure is high, it has come down just a coupe of points over the last weeks which is good. We are slowly decreasing the amount of ACTH we are giving Jaylie daily. I believe we have roughly another week of the ACTH and then we are done. If you recall, the pulmonary Dr advised the ACTH has roughly a two week ramp-up period before the individual starts to experience high blood pressure. The pulmonary Dr also advised it takes the same amount of time (roughly two weeks) for the high blood pressure side-effect of ACTH to ware off. So hopefully these blood pressure issues we are battling right now will be complete resolved three weeks from now.

We reach a major mile stone this Thursday. This Thursday will be Jaylie's first birthday! Can you believe it!

It's been 64 weeks (roughly 1 year and 2 months) since the Dr's advised Jaylie's placenta was failing and she most-likely would only last a couple more days and then pass away. Well, here it is 434 days later and Jaylie's very much alive, growing, learning, maturing, developing and living! Within the last +400 days, we have witnessed true miracles and awe-inspiring gifts from God! The icing on the cake being we get to celebrate Jaylie's 1st birthday on Thursday - is that amazing or what!?! God it good! Thank you Lord!

Jaylie's immune system is still suppressed due to the ACTH and so we are not able to do the typical things you would do for a 1 year birthday party but just the fact we have made it to this point is worth celebration is whatever capacity available!

Jaylie is making good progress with eating on her own, making noises, rolling over, sitting up and other motor skill movements.

Jaylie is currently 16 lbs 10 oz.

Over all this last week has been a good week. We are coming to the close of the ACTH treatment and are pleased with the overall results we have experienced thus far.

Please keep us in your prayer as we continue on with treating Infantile Spasms (IS) and working with Jaylie's growth and development.

Thank you all for your prayers and support! They are greatly appreciated and needed!

Happy Holidays!

Nathan, Kristina and baby Jaylie

Friday, November 5, 2010

Jaylie - 11 months 2 weeks - ACTH day 27

We are back up at Swedish for another 24 hour EEG. The Dr's are monitoring Jaylie to see if she is still having seizures form IS (Infantile Spasms). Jaylie has been doing this little shaking thing sometimes, and with the Dr's having to cut the dose of ACTH several days before the Dr's were planning to, the Dr's are concerned Jaylie did not get enough ACTH soon enough to completely stop the IS. So the Dr's have decided to do a 24 hour EEG watching Jaylie to see if there is anymore seizure activity going on. 

Depending on how today's EEG goes will determine if we need to change our IS treatment strategy or continue down the path we currently are on. Our current path is to wean Jaylie off the ACTH, meticulously watch for seizure activity and take a oral medication to help keep any seizure activity at bey. 

Jaylie's blood pressure has gone down today, yay! The Dr said there is usually a two week lag in regards to ACTH affecting Jaylie's blood pressure. If I understood the Dr correctly, this two week lag would explain why Jaylie's blood pressure shot up all the sudden and also why it has taken some time for her daily blood pressure to come down. We have to be consistent in giving Jaylie her medication and over time (roughly 2 weeks after we stop the ACTH completely) these blood pressure issues should subside.

We started weaning Jaylie off the ACTH the tuesday before last. The weaning process invokes cutting the by 25% each week until we are at a low enough amount to completely stop. Right now we are on the second week of weaning. We have another week, or two or three more of weaning Jaylie off the ACTH before we can stop the ACTH all together.

Jaylie has gotten really swollen while on the ACTH. So much so people who don't know Jaylie think she is a boy because her face has gotten round and her jaw very square *sigh*.

Jaylie's swelling has started to come down but is still significant. 

Jaylie is 16 lbs and 27 inches long now.

Jaylie will be 1 year old in less than 2 weeks - can you believe it!

As always, thank YOU so much for your prayers and support! They are a life saver for us! We really appreciate them all...

Nathan, Kristina and baby Jaylie

Here are a couple of pictures from today: