Wednesday, March 26, 2008

Lately

I love blogging and the opportunity it presents to record our little family's history, especially considering we don't scrapbook or write in journals. However, I have hesitated to blog about some recent events because I am having a difficult time staying positive!

We were hoping that putting Brady on seizure meds would decrease the frequency and/or severity of his seizures but unfortunately the opposite has occured. He has had 2 to 3 seizures per week lately, some of which have clustered together and turned into grand mal seizures. When this happens we administer a valium suppository and it then takes Brady two or three days to return to normal activities like walking or going to his usual therapy appointments. He is averaging one or two good days a week when he seems like himself.

We are becoming more skilled at handling each situation as it arises and no longer feel the need to call the paramedics. However, each 'event' is still incredibly frightening. It's also becoming frustrating to cancel all of our plans at the last minute and continue to sleep with Brady during all naps and throughout every night. We are finally admitting that we need some help and are starting the process of hiring a respite care provider. Respite basically consists of babysitters who are trained to care for Brady's specific needs and could watch over him while we are home and need some rest, while Troy goes on errands during the day, or in the rare possibility that Troy and I could go out on a date. It might sound insane that we have never hired a sitter since moving to AZ but we are paranoid parents who haven't really dared to ask for help followed by directions for what to do if Brady turns blue.

We have met some amazing families on our journey with Brady, many of whom have extremely medically fragile children, some with limited life expectancy. This has brought me some needed perspective and has helped me adjust my expectations of what I thought my life was going to look like once I had children. I still have my bad days but will readily admit that the positives in our situation ALWAYS outweigh the negatives. I mean, have you seen this smile?

I feel better already. Thank you, internet, for helping me stay positive.

8 comments:

Dusty said...

Guys... my heart goes out to you. You guys are seriously incrdible parents. You are so unselfish. Anyway, thanks for keeping us up on things even if they aren't necessarily positive... we WANT TO KNOW!
Also, thanks for catching the error on Jane's Protein post... she meant to say carbonation not caffeine.
Later... loves...
Dusty

Jane said...

I want to come over and give Brady a big hug, right now. Please squeeze him a good tight one for me tonight.

I hope you are able to find great help, and that he/she will give comfort and relief to all of you.

(((HUGS))) to all three of you!

onceapickle said...

Oh, Kajsa! I wish I was with you right now to throw my arms around you...I'm crying just reading this!

So the medication is not even working? That sucks (sorry, I hate that word but really, how else do you describe it?)...how disappointing. You must be so frustrated. I'm so sorry!

I can't imagine how hard this time must be for the three of you. I marvel at your strength and dedication. You and Troy are such amazing parents and I know Brady is so lucky to have you, just as you are so blessed to have him! Please know that you are in our thoughts and prayers. If there is anything at all we can do to help please let us know. We'll be thinking of you...

Chris and Jenn

themacmomma said...

I'm so sorry.

What in the world will you do? Take him off the RX? There has got to be a better way.

I'm all for getting some help. With all on your plate it's good to divvy out the stress so you can replenish yourself.

I also hear you on life not going as you imagined. We make it through though and I think you have the right answer in finding the things you are thankful for, and love, even though it seems to hard to bear sometimes.

We are thinking about your family. Love all three of you!

Lindsay Bailey said...

You are wonderful parents. I know with Gavin we would have needed 24 hour nursing help in our home, and although it's an intimidating process, we knew it would provide some time for us to rest and catch up on the other "have-to's" in life. I think about you guys all of the time and we pray for your sweet Brady. His smile in that picture just made my day!

Elisha said...

Kajsa, that post honestly brought tears to my eyes because I can tell what incredibly devoted parents you guys are. Seriously, you're amazing and Brady is so incredibly blessed to have you. I think he knows it too. I wish we lived closer to help you out in any way possible. Good luck with everything and we think about you guys often!

Sara said...

Oh, it breaks my heart to read this, but I so admire you! How brave you are and what strength you must have to deal with this! (Just this morning I blogged about the "drama" of ear-tube surgery, which is NOTHING by comparison!)

Life just doesn't seem fair sometimes, does it? That's one lesson we have probably all learned one way or another... But please know that there are many of us (as already evident by the comments posted) who love and respect both of you and hope the best for your sweet little family. You are both very blessed to have one another to go through this with... hold each other a little tighter and tell each other often how much you appreciate each other. How close this will bring the two of you! Brady will continue to benefit from that strength.

And I am so glad to hear that you are going to find help. I am sure it will be a HUGE relief to have some time to yourselves, both individually and together, knowing Brady is in capable and trusted hands. You will ALL be better for it! Love to all of you~

Rebecca Storms said...

Words are slow to come, but my mind and heart are full of thoughts of strength and admiration. I knew Kajsa when we thought being STRONG was making it through an hour long aerobics class taught by Jesse. We thought BRAVE was driving on our old boyfriends lawns, we thought MATURE was taking a trip to Vegas without our parents, and we thought UNDERSTANDING came with an academic grade.
We didn't know what any of these words truly meant, most of all we didn't understand the power of these words. You have shared the true meaning with all of us on your blog and allowed us all to grow with you. Thanks for all your LOVE that we might all better understand what that truly means. I love and miss you Kajsa!
We need just one good girls night out!!!