Tuesday, April 6, 2010

Has It Only Been a Day?

So I am back in Yuma and Jeremy is still at the Mayo Clinic. It feels so strange, I was a huge baby yesterday on the way home. Once Skyler fell asleep, I just couldn't stop crying. I don't know if it was the fact that I hadn't slept much all week or what but I was just so sad to come home. I was super excited to see Kenzie again, but the thought of taking the kids and going home to a house without Jeremy there was rough. It has seriously been 3 months since I have been in that house without Jeremy there all the time. I know it has been hard on him being pretty much confined to the house, and I hate that he had to be, but we have sure been able to spend a lot of time together these few months, lots of long talks, lots of long nights, but it was time we were able to spend together. When we got home Skyler asked if he could sleep in dad's spot on the bed, I told him yes, then he wanted to look at photo albums to find old pictures of him and his dad, it was sweet. I hope we can soon fill more photo albums with pictures of camp outs, fishing trips, hikes, and fun family times. Anyways, enough of that talk, it feels like I haven't seen Jeremy in a week. He is having an OK day, his sister Sarah went and sat with him for a couple hours today at the hospital, he said that it was nice getting to visit with her. I talked to him at about 10:30 this evening and he was hurting pretty bad, I don't know if it is his body having withdrawals from the medication or if he is going to have a rough night with the seizures. We are still both in shock that he has only had 3 seizures this week, that is just crazy, that is typically what he would have on a good day. So let me fill you in on our new trial. Kenzie's hearing aid has not been working well for her lately, I was able to borrow a loaner from the Cooperative that I work for, but we tried it on her today, and she still says she can't hear. The thought of her needing a 2nd implant is terrifying for me, but also I feel such a sense of urgency to get the process started before that ear forgets how to hear and function as well as it did. She has trouble hearing, especially in noise, with only her implant processor on. It is heartbreaking to think we may be starting this whole process again. She was nervous at first that she may possibly need another CI, but when I told her we would not have to worry about being able to ride roller coasters anymore, she was jumping all over the place and saying "whoo hoo!" She has wanted to ride roller coasters for the past couple years, but since learning she had Enlarged Vestibular Aqueducts, that has been out of the question, those changes in altitude can wipe the remaining hearing away for good. Another thing that can make her lose that hearing is if she bumps her head, she and Skyler were playing/fighting with sticks while I was up at Mayo and she ended up getting a pretty good whack to the head, at the time I was just worried and sad for her because it was bleeding and she was so sad, but later as I put two and two together, I realized that hit may have been what took the remaining hearing away. I know many may say, well she is deaf anyway, but she had some really good usable residual hearing in that ear and did very nicely with her hearing aid. I am still praying and holding out hope that it will come back, but I am also trying to be realistic and prepare myself for the next step if it doesn't. I am rambling on and on and on again. I don't know if I will get a chance to post for a couple days, I have a busy day tomorrow with work and meetings, and then Skyler and I are headed back up to Phoenix to get the growth under his eye removed, they have to put him under for it because it is so close to his eye. When his procedure is finished, my mom will bring him back to Yuma and I will stay with Jeremy, hopefully he will be released by this weekend. I am just so scared that they will not have any definite answers. I am so blessed because my bosses have told me I can work on several IEPs while I am gone so I don't have to go without being paid, that is such a blessing right now, not to mention the fact that I have those to do as well as all my college work has been really stressing me out, so if I can get a good portion of those finished, that will alleviate a bit of stress. OK well I am going to try to get some sleep.

4 comments:

Stephanie said...

So much to process! Hang in there! I hope things look up for you guys.

Sabra said...

Hang in there.

Tia said...

I swear listening to your stories is what keeps me going. honestly hang in there!

Kimmy said...

Oh Allison. I have been catching up on blogs this morning and am just floored. My heart breaks for you and Jeremy. What frustration. I hope the drs are inspired and can give you guys some answers soon and that they can figure out a way to help Jeremy. I cant imagine how stressed you guys are. And then to have to deal with all the other things on top of it. All I can think of is the refiners fire. I really admire your faith and your endurance. Hang in there sweet girl! We'll be praying for you, but if there is anything else we can do-- please let us know!