Hope is the thing that is willing to take a chance on the future. Hope is the capacity to see something on the horizon that we are willing to move toward. If our hope gets us from today to tomorrow, and in that new day we are ready or able to deal with something we thought we couldn’t face, then hope has done its job. There is a worse thing than false hope. It is no hope.
Jack's teacher and OT did some pumpkin carving with him today. Kristi took these pictures (I'm not sure what Jack was "eating" that gave him a green tongue!)
Jack's radiation procedure was a no go today. After scrambling and getting all of Jack's morning care, including a shower, done so we could get there by 10am - we were told that we were supposed to be there tomorrow -- which is absolutely not true. I have a full day of appointments at work tomorrow and I would not have scheduled the appointment for Tuesday. When they called last week and told me I could come on Friday, I told them I could not, so we scheduled for Monday instead. After I told them I would never have scheduled the appointment for Tuesday because of my work schedule, they then told me "well, the machine is down anyway". I was angry to the point of tears. I missed a half day of work and accomplished nothing. Work is out of control busy and I really didn't have a half a day to waste. It just infuriates me. I told them I'd call and reschedule once I got back to work and could look at my schedule. It will take me several days to cool off enough to call them. It won't be this week and probably not next week either. Jack has an appointment with his pulmonologist next week just because. He's not sick and there is no reason he needs to be seen. But, if I don't take him in, the guy won't refill his prescriptions. So, I'll miss yet another half day of work just because! One of the most stressful parts of being the parent of a kid with a plethora of medical issues is all the appointments and missed work. The hours I am not at work have to be made up somewhere and it's usually late nights and weekends. Eric has a well-check with the pediatrician on Thursday that I'm now going to reschedule ... for the second time. I just can't seem to get a handle on the whole full-time working mom of four children one of whom is medically involved thing! Tomorrow is bound to be a better day ..........
I'll leave you with a picture of Eric's idea of home decorating
(please disregard all the dust on the wall and ledge -- dust is another one of those things I can't get a handle on!)
Several months ago I read a story in our local paper about an organization - Room for Joy - that is "dedicated to enhancing the healing process of chronically ill children by providing imaginative bedroom environments for them". I thought with as much time as Jack spends in his room it would be so cool if he could get a room makeover -- something really extreme and interactive for him. I emailed the organization and received a phone call from the founder/director. She said that they had one other child they had already committed to help, but she would put Jack next on the list - but, at the time she didn't have funding for another room. Well, she called me yesterday and told me the other project fell through and that she would love to do a room for Jack! We met with them tonight and talked about a theme and what Jack would like in his room. I'm not going to tell you what we decided ....... you'll have to wait until the reveal! It's like a mini-extreme home maker. They even kick us out of our house for three days, put us up in a hotel and provide all our meals and entertainment for the weekend. They will be doing his room the first weekend in December. How exciting is that?!
The other "fun" news is an Eric "funny". Right before Fall break I received a letter from our school district telling me that since Eric qualified for the gifted program (and since we didn't place him the self-contained program which is at a different school), that he is eligible for placement in the "consultative gifted program" at our school and his teacher will be contacting me to discuss his "special needs". Just goes to show that "special needs" doesn't always equate to having a disability. I received an email yesterday from Eric's teacher letting me know how much he has improved in his listening and following direction skills and other good stuff like that. Then, in an effort to meet Eric's "special needs", she goes on to tell me that she "went to the library tonight and got a book on leeches - a topic Eric said he would like to learn more about. He will be reading the book in class and then writing and drawing about what he learned." Yes, she said LEECHES! Should I be worried that my five year old wants to learn about leeches? I asked Mark where on earth did he come up with this. Mark's response "well, he likes parasites". He does? Sometimes this kid really scares me. I can just picture his teacher's face when she asked him what he wanted to learn about. I'm guessing she hasn't checked out a book on leeches before. The kid sure keeps us laughing.
This week flew by for me with all of Jack's appointments for the radiation, I missed quite a bit of work. Jack is scheduled to have the procedure done on Monday. It will be without sedation and it will not painful for him -- although I'm sure he'll be a little scared because he has to wear a radiation mask they made especially for him on Wednesday. I'll just be glad to have this behind us.
That's the update from here. Wishing you all a fun-filled weekend.
We met with the radiation oncologist today. I rescheduled Friday's appointment because they scheduled us for 2pm and I couldn't force myself to face Friday afternoon traffic from downtown Phoenix back home. You can see where my priorities are. My sanity versus Jack's well-being. However, I'd like to believe that Jack's well-being is directly related to my sanity :-)
We saw one of the younger doctors in the group and he came in with his PubMed articles in hand and told me that I forced him to do his research. He briefly went over what the research said and the pros/cons and alternative treatments. When it was all said and done, there wasn't anything he told me that I didn't already know or we hadn't already tried. He was totally on the same page as me and agreed that this was an appropriate option for Jack. He had even called an ENT to discuss this with and to get his opinion. I really appreciated the fact that this guy did his research. Jack has a CT scan scheduled for Wednesday and then the one-time radiation to the upper and lower salivary glands on one side will probably be done next week. Since this is the procedure of last resort, I just hope it gets the job done.
Things have been quiet around here and that is a good thing. Not much happening, except for a certain little boy's recent loss:
of a tooth!The kids started back to school today after two weeks and two days off for Fall break ... entirely too long to be off. Mark is out of town for work -- lucky guy gets a few nights of sleep without interruption. I was supposed to go to Las Vegas next week for a seminar, but I decided not to go because the mom in me (or is it the control freak in me?) didn't feel right leaving Mark on his own with the kids for three days. I was really looking forward to a few good nights of sleep though.
We have a consult with a radiation oncologist this Friday to discuss radiating Jack's salivary gland. We've met with a different radiation oncologist in the past, but he just kept trying to talk me out of doing it. We've tried an entire year of botox injections to the salivary glands and it's just not helping. I'd say that at least 75% of what we suction from Jack's mouth and trach is saliva --- so, it's not a small issue. I'm also really tired of the constant wiping of drool from Jack's face. I am really looking forward to getting this issue resolved. I just hope that knocking out one salivary gland will do the job. Jack's two lower (mandibular) salivary glands were ligated several years ago and that didn't help. We can't eliminate saliva completely because it's necessary for healthy teeth. He'll be left with one major gland after radiating one gland. Anyway, probably way more than you wanted to know about salivary glands and saliva, eh?
In other news -- we have a new nurse who starts tomorrow and will be working one day a week to give Kristi a day off. The most remarkable thing about our new nurse is that her daughter used to have a trach. I first met Angie at a conference for families of children with trachs that was held in St. Louis back in 2004. Angie lived in Minnesota at the time. She moved to Arizona two summers ago. Angie actually contacted me and asked if she could help out with Jack because she knew how much trouble we were having getting additional nursing help. How cool is it to have someone I know and someone whose own daughter had a trach offer to take care of Jack. It doesn't get any better than that.
The update on my mom is that she had her first post chemo/radiation MRI a few weeks ago and it was "clean" -- no signs of the tumor recurring. More great news.
Thanks so much for all your nice comments about my kids' pictures.
Ciao my friends.
It feels like we were gone for several weeks instead of several days. We had a wonderful time together as a family and while I don't want to diminish the great experience, I will tell you that it's just not the same when you can't say "come on kids, let's get in the car and go ..." Not when it takes two hours to get Jack up, ready, and in the car to go anywhere. The last time we went on a family vacation, Jack was still in a stroller and I could hold him on my hip! Now, I can't even lift him. Anyway, it was a once in a lifetime experience and was good for all of us, on many levels. I downloaded a few ... okay, more than a few ... pictures from our trip. Click on "Visit This Album" (and then on the first picture) to see the pictures close up. Please let me know if you have any trouble viewing the pictures - this is my first time using this host site.
I had to laugh at Eric in the shark exhibit at Sea World. He is not shy about telling us (and anyone else who will listen) what he knows about the particular subject at hand. However, I think he met his match in this little girl -- she was not only able to keep up with Eric, I think she even had a thing or two to tell him. It was too cute. 
Have a great week.
I had the kids up and down to the beach early this morning for my photo shoot. I'm happy with the pictures. Yesterday wore Jack out, so he, Mary and I stayed around the hotel today while Mark, Eric and Hilary went to the zoo for a few hours. Tomorrow is Sea World. I think vacations are a lot more fun when you are a kid -- I'm exhausted!
I took over 50 pictures this morning, here is a sample (I'll share more once I get home and get them uploaded to an online photo album.)
Free internet at the Del ..... (yay!)
Today we took a ferry ride from Coronado to the mainland and then walked around Seaport Village. After we got back to the hotel -- while Jack rested, Mary, Eric and I went down to the ocean. We plan on taking Jack down to the ocean tomorrow. There are a lot of logistics involved with getting him down there -- we are borrowing a special wheelchair from the lifeguard station that works on sand. We have a full day planned tomorrow. It's a lot of work and takes twice as long to do everything with Jack -- but, it's so worth it and we are all having fun. Thanks for checking in. I took a ton of pictures today, here are a few.
Tomorrow we are heading to San Diego for a few days. It will be our first vacation together as an entire family since before Eric was born. We are staying at the wonderful "Del" on Coronado Island. It's just a hop, skip and a jump to the beach. You'd think it was almost Christmas around here -- the kids are so excited. We can no longer all fit in the van with all of Jack's equipment, so we have to take two cars - which is a bit of a bummer. The five hour drive will seem like a cake walk compared to the usual two-day, 26 hour drive to St. Louis. I'm so happy to be heading West instead of East!
We are planning a day at Sea World and a boat ride around the bay, courtesy of my brother's in-laws. Mostly, we just want to hang out on the beach and relax. I can't wait to see Jack's face when he sees the ocean for the first time. I am bringing my computer - however, I'm guessing the internet in the hotel room will be ridiculously expensive, but - if I can find a nearby Starbucks and free internet, you'll be hearing from me. If not --- you'll hear from me when we get back.
I'll leave you with this cute face -- he's bound to make this a memorable trip! (I'll try and take note of all the Eric-isms along the way.)
Jack had his eye-response communication evaluation yesterday at the Speech and Hearing Clinic at Arizona State University. He can do it! There was some concern at first that the computer might not be able to calibrate his eyes because he has artificial lenses due to congenital cataracts - but, it worked. It took awhile to get everything set up and going and Jack was tiring by the end, but he was able to move his eyes to different places on the computer screen and activate it. They didn't try anything too complicated like letters, so Jack wasn't able to compose his first novel -- yet! This system will allow him to do with his eyes what he used to be able to do with his hands. We know there is information in his head that he can't get out, because he was able to get it out several years ago and now his hands/arms are just too weak. Everyone agreed that he is a candidate for the system (called ERICA) and we are going to get the ball rolling to get insurance to approve it. Our private insurance paid for Jack's first communication board and they should pay for this system as well. I stressed the need to get going on this asap because we are nearing year end and I don't want this ordered after the first of the year when I have to worry about deductibles and co-pays. I'm hoping I don't have to get Medicaid involved in this because it will cause nothing but delays. I'm so happy for Jack and excited about the possibilities. The sky is the limit!
*****************
Have a wonderful and peaceful Fall weekend. 
Today is Hilary's 17th birthday. Needless to say, it's been an interesting ride. All the worries, fears and sadness I felt the day I found out she was deaf have been replaced with pride and optimism (and a little frustration along the way). Hilary has accomplished much and overcome many challenges. One day when I figure out how to convert VHS to a video I can share online, you can all see how far she has come. Hilary is the reason we ended up in St. Louis -- where we needed to be, not only for Hilary, but for Jack. Life has a funny way of working out for the best, even if it doesn't feel like it at the time.
(Hilary wearing her first set of hearing aids)
(first day of school in a "regular" school after spending
Thank you for riding along with us on our journey.
