Sunday, February 24, 2008


There's a whole lot of nothing going on around here. We had a quiet weekend and I stayed in my PJs for the good part of Saturday. Mark did all the running around -- Mary to school for track team pictures and practice; Eric to soccer; Mary home and then to Irish dance. Jack and I just hung out all day. Sunday is my day to get up early to hike and then go into the office for a few hours. Kristi has been working every Sunday, which has been nice because I can be away from home without feeling guilty.

Jack continues to do awesome. It really is remarkable how healthy he stays for a kid on a vent. Notwithstanding the viral thing he had the last few weeks, he's having a good year. I consider it a good year when he doesn't require oxygen or antibiotics. I have no idea how Jack compares to other kids his age, with his disease and level of medical intervention when it comes to being sick and/or requiring hospital stays, but I do think Jack is an exception given the fact that he has never (in almost 10 years) been admitted to the hospital for a respiratory issue (knocking on wood). I'm sure it has a lot to do with the fact that he doesn't attend school -and the fact that it takes a LOT to get me to take Jack to a doctor. I vowed when Jack left the PICU in the summer of 1999 that we would never end up back there again. I was so adamant that I never wanted to see that place again, that when Jack was showing signs of a bowel obstruction only 2 months after leaving the PICU, I almost waited too long to take him in. I still remember sitting in the ER just sobbing because I did not want to end up back in the hospital. I had been a prisoner of that hospital every single day for almost 6 months and I couldn't do it again. I also remember that the surgeon was a complete jerk because he couldn't (or wouldn't) understand why I didn't want Jack admitted. Fortunately, my favorite PICU intensivist showed up and compassionately convinced me that Jack needed to be admitted (for what ended up being a short three day PICU stay). Wow .... that seems like so long ago. Whatever the reasons, I'm just thankful Jack does so well and I definitely do not take for granted how lucky we are to not spend much time in a hospital with Jack.

I have another busy week of Jack stuff. He sees his orthopedic doctor tomorrow for a follow-up spinal x-ray. On Tuesday we have our every two month meeting with the vent dependent program rep, nursing agency rep and Department of Developmental Disabilities rep. I don't understand why we have to meet every two months ... it's not as if he is going to miraculously get off the vent in that time. Every six months really would be sufficient. But, since I don't make the rules, I'll play the game - as if I have any other choice. Tuesday is also Jack's IEP with the school district. If you recall, in the Fall of 2006, I filed a complaint against our school district with the Department of Education because they were in violation of Jack's IEP. They were found to be "not in compliance". Apparently, it had no effect on them, because they have been in violation of Jack's IEP more this last year than in 2006. I don't even have the energy to get into how grossly they have failed to comply and, sadly, I don't really have the energy to get into it with them at the IEP meeting. I can live without them providing services because Jack gets wonderful services through DDD. What I can't live with is their attitude. The attitude that they actually believe they are doing right by Jack. It's just such a bunch of $#@! I'm not sure yet what I'm going to say at the IEP meeting. I really could use an advocate when it comes to the school district. Not because I don't know what my rights are, but because I don't have the energy or the time to deal with them. I just ask myself ... at the end of the day will it really matter. To me, the answer is "no".

I'm still waiting to hear when we'll get the eye gaze system. It has been approved and ordered. Last I heard, the problem is that the company that provides the system is not on our state's vendor list. We have to wait until they jump through all the necessary hoops to be an approved vendor before we can get the system delivered. I haven't heard from the attorney regarding the status of the appeal with UHC. Follow-up phone calls/emails are in order. Just more stuff to add to my plate.

Well, for someone who doesn't have much going on, I sure had a lot to say :-)

This morning on my hike, there was the most amazing sunrise. I didn't have my camera with me, but I took a few pictures with my cell phone.

Have a great week my friends. Thank you for reading. Thank you for caring.


Anonymous said...

gorgeous sunset!
I'm so glad your weekend was peaceful and quiet. I'll be right there with you this week up against our school system. dreading it!!!!

julie w said...

Wow, that sunrise is beautiful, what a lovely way to spend a Sunday morning.
Glad you got a restful weekend - sounds like you need it with the week ahead! Good luck with the ortho and everyone on Tuesday. Hope the meeting with the school district is not too stressful - we have one coming up too, and they are planning to reduce Sam's level of funding at school for education (not health) because he is doing 'too well' duh - isn't that the reason the funding is there in the first place??

Have a good week.

Anonymous said...

Great pictures. I'd love to go on a hike with you someday. We have our transition meeting next week--as we move out of early intervention and into the school district. I dread it!

Uneventful weekends are great. I'm so glad that Jack continues to stay healthy and happy. I can't wait until he has his eye gaze system. I know it will be wonderful for him. Have a good day.

Rachel Marini said...

I do care... I love reading your notes about Jack's every day life. His life matters... even though idiotic people would beg to differ. Today we took Gabe to the Physical Medicine doc who could've cared less about providing Gabe with any rehabilitation equipment or even giving any sort of insight about his future rehabilitation. Sigh. Something's so wrong with this.
I'm so thankful you are able to share Jack's life with us.

Melisande said...

Beautiful pictures, Ann! I need some sun and bad!! Kiss Jack for me!!

Cindy said...

Regarding hospitalizations, there isn't much the hospital could do respiratory-wise that you can't do at home anyway, since Jack is already vent dependent. And it is wise to keep him away from the hospital and all those germs as much as possible.

I hear you regarding the school. It can be a constant battle. I'm so thankful that its relatively easy to get services for my boys. I can't imagine having to fight for all three of them. I definitely would not have that kind of energy. Ugggg...

Anonymous said...

Hi Ann, what a incredible sunset, just wanted to let you know that I keep up with the blog every other day, I am so happy Jack has been doing so good, except for the bug he had......he is surrounded by the best of care and lots of love, that is for certain, just wanted to drop a line saying you and Jack are in my thoughts, and I do read the blog alot!!! pat berger