Monday, October 28, 2013

damn, here we go again

"it's not the size of the dog in the fight, it's the size of the fight in the dog."
(mark twain)
oh, the irony.
had a great day for my one day this week that was totally under my control. until we got to dinner. somehow got gluten in my dinner and got sick. it hit like a semi-truck while malena and ran into target right after we finished dinner. thank goodness barrett was there so that he could come in and take her when i got so sick i could barely walk. so i have been down for the count all night. on the couch. too sick to move. yep, so much for a day under my total control. sometimes the fates really piss me off.
scan day. here we go. i check in at 1:30 for blood draw. i start drinking contrast at 1:45, scans are at 2:45. in addition to my chest area to check my lymph nodes and organs, they are going scan the top half of my legs. my upper right leg has been bothering for me a while. i don't feel any lumps, but it just feels off. so we are going to scan that as well. i will get out of scans, sit and wait for 30 minutes to make sure that i don't get sick (eat awesome snacks that ellie always brings) and then head home just as i start to head downhill. the usual drill. i will be packing my bag tomorrow with mojo (my friend hannah knitted my own little mojo to take with me - i heart him), my cinnamon bears, my pocket talismans, all of my go to scan day items. superstitious? you bet. i like to keep the routines that i feel bring me good luck.
thanks for all of your good mojo, prayers, and vibes - i really appreciate them and i carry  them with me.
i want to ask for you to please send your good prayers, vibes, and mojo to patty who is in the hospital due to some complications from her tumor. so please send your good energy out on the winds to patty and her family, i know they really appreciate it.
i also want to share the latest update on chase:

"Do you see what I see....... :)

Written 10 hours ago
-(Picture of Ava helping out at therapy)

Hi, we're back :) It has been fairly routine around the Lykken household, so there hasn't too much newsworthy to share. Chaser is recovering well from his surgery a couple weeks ago- and the botox injections. The verdict is still out on effectiveness of the botox to his salivary glands- It seems to have slowed it down a little, but not the hocus-pocus we were hoping for. The Nissen procedure on the other hand, has been a complete game changer! He has had very minimal throwing up, and the couple of times he has can either be attributed to overfeeding, or his "shake-n-bake" treatment. His feedings are still being stretched out over an hour and half, and will continue to do so until his checkup on Nov. 18th. We have started feeding him Compleate formula during the day- which is an all natural purified food mix, and still using Ellecare Jr. to get his calories during the night. He seems to be tolerating it well. We have weened him completely off pain meds, and today is his forth day with no valium. The last 3 nights he has had some struggling moments of crying and moaning- last night, lasting the entire evening. We are not sure what is causing these episodes, but the Drs at Mayo have suggested we try an as needed valium dose. As much as we want him off of this to give him the best shot at therapy and stimuli, we don't want our little dude in pain, so as soon as we get home from our drive back from Mayo, we will give him some to see if that helps.

At 7am this morning we ventured down to Rochester for an eye exam appointment. The Dr. shined some bright lights in his eyes, held up some lenses, and put a transformer like mask on to look into his eyes. -They we looking not only at his reactions to the light and other stimuli, but also at the cosmetics of his outer and inner eyes. After conversing together, they came in to give us their conclusions. As we had expected, they can not tell us if, what, or how much Chase can see. But here is the good news- other than a little difference between the eyes- that does show some damage, they look normal cosmetically! Meaning, that as his brain continues to heal, so may his vision! He did react to some of the stimuli, maybe not as much as we would have liked, but he did react! The overall conclusion is that time will tell. As with all of Chasers healing, its out of our hands, and in that of the Big Guy! On our drive down this morning, Lisa and I we preparing for our visit to St. Marys religion class in Bird Island later this week, where we and Chase are going to meet some of the High School students and discuss his journey. As we recapped the last 7 months, we may not know for sure what Chaser can see, but it became crystal clear to both of us how fortune and we have been. Not only to have Chase here with us, but all of the support and blessings we have received along the way. Thank you all for your support. Have a great week. God is Good!"

i hope that you all have a great tuesday, make the most of it - do something on this day just because you can. because the day is yours to make the most of however you choose to. thank your lucky stars for that and enjoy it.

anywhere i go, you go. xoxo


1 comment:

  1. alli-sorry you had a rough night last night :( we are all thinking of you here today. everyone had smoothies for breakfast in solidarity. the black beast better keep the hell away from you or the wisco posse is going to bring the whoopa$$. oxoxox