Sunday, January 24, 2010
On Friday Jenelle had her annual eye exam with her opthamologist. Physically, her eyes are perfect, even though she appears to be a bit near sighted. Dr. Ching, who has been following Jenelle since she was a baby, said that the improvement in her tracking is outstanding, however without her being able to communicate what she can and can't see, the quality of her vision is still unknown. Of course, we've always known that her blindness was cortical (meaning her brain was not making the connections for her to see) and we always knew it was something that would get better with time. Glasses are not an option at all for Jenelle because we really can't tell how poor her nearsightedness might be. So for now, physically the eyes look great and we'll see him in another year.
Brett has always been near sighted, and we've assumed the same for Jenelle because she tends to get up close to things when she is playing, especially if she is watching TV. She likes to get up close to the screen, and hold it from the top. This became a costly problem on Saturday when Jenelle pulled over our flat screen TV and shattered it. It was one of those "I'm thankful you didn't kill yourself but I want to kill you for doing it" moments in parenting. She is fine and was unfazed by the ordeal.
Jenelle is really quick these days around the house and has mastered going up and down the step in our entry and can not get into the room where she is not allowed (i.e. the room with many breakables still in it!) She also has mastered opening and walking through the safety gate that keeps her out of the kitchen. I was shocked the other day as I was heating oil for tacos and found Jenelle standing next to me in front of the stove. We know she loves food, and her impatience to be fed has taught her to out master the safety gate. This kid is brilliant I tell you! And did I mention she is quick?
And finally, a fun milestone to report. After being couped up inside all week because of the rain, Aunt Nicki and I took the kids to Disneyland today. Jenelle had been agitated on the ride there, but suddenly calmed down and started smiling the deeper we got into Main Street. Jenelle loves Disneyland for its bright colors and music. She does well with the rides too and will pretty much ride anything except the roller coasters, Tower of Terror, Soaring over California, and up until today, Indiana Jones.
Today I had a wild hair and decided Jenelle might enjoy Indiana Jones. Nicki and I decided to strategically sit her between us so there would be no possibility of her falling out. She sat well, smiled a couple of times, and held our hand tight throughout the whole ride. It was a new experience for her, and from what I can tell, she enjoyed it. Of course, we had some trouble at the very beginning. Just as we were starting the ride, one of the cars ahead of us broke down and had to be evacuated (cast members had to walk to them with a ladder to help them out of the car). We sat in our car for 15 minutes and Jenelle started to get a little antsy. I was relieved we didn't have to evacuate our car because Jenelle's wheelchair was back at the loading dock. After the delay, we went through. At the end, the cast members asked if we wanted to ride again because of the delay. We were already buckled in, so why not? So for her first ride on Indiana Jones, Jenelle rode twice in a row! It was fun, yet she held onto our hands tightly the entire ride.
That is all for now. I will keep you posted.
Tuesday, January 12, 2010
Monday, December 21, 2009
Why Health Care Reform Won't Work
Today I worked a day shift in the Emergency Room (i.e. business hours). In my short time, I saw 21 patients. All of the patients I saw today had some sort of medical coverage, mostly Medicaid, but some private insurance as well. Out of all of these, 19 complained about their wait time and 2 thanked me. However, much more importantly, 20 didn't need to be there and 1 person seriously had an appendix that needed to come out that second, but he had to wait 4 hours behind "ear pain," "STD check," "sore throat" and "rash." Before I started my shift, I made it a point to be sure and document if each patient had access to a primary care provider, either a pediatrician or family medicine doctor. Out of 21 patients, all 21 answered "Yes" to having a primary care doctor, and knowing how to contact them. Two patients had contacted their PMD before coming to the Emergency Room. The first one was the appy, whose pediatrician had taken one look at him and sent him straight to the ER for a surgical consult. The only other person who had actually called their PMD was a child who fell off a kitchen chair. The reasons that 19 other parents didn't call their primary care doctor and instead came to sit in the Emergency Room were as follows:
"Didn't think about it" = 6
"Couldn't get in to be seen today" (all could be seen before Christmas, however) = 9
"Don't get along with my PMD" 1
"The ER is closer than my doctor's office" = 2
"Thought this was an emergency" = 1
Just because people have medical coverage and ample access to primary care providers, does not mean our Emergency Rooms will be any less crowded. Just because people have access to a primary care provider does not mean they will not be impatient. It does not mean they will not want care "RIGHT NOW" and it surely does not mean they will understand the difference between a minor annoyance and a full blown emergency. I try to educate families on appropriate uses for the Emergency Room, and some parents actually feel comforted by that. They are glad to know a plan of attack, and what things should worry them. Most parents, however, just roll their eyes at me and ask, "How much longer?"
A long time, my friends. A very, very long time.
Sunday, January 10, 2010
In the beginning of December, we took some time to help Aunt Nicki with her Christmas lights. Here is a photo of her dog Copper looking out anxiously as Brett and Jack decorated her house.
In the middle of the month, we celebrated an "early" Christmas with my parents. Here are Nana and Poppa George with Jenelle.
Here is Jenelle looking very cute at the White Elephant Christmas Gift party we have every year with family. My parents participated this year for the first time, and we think it will be a regular thing!
After the White Elephant Party, we took some time to take Nana and Poppa out to see Christmas lights. Here is Poppa George checking out Santa's saxophone.
On Christmas Eve, we celebrated mass at Holy Family Cathedral Church where Jack goes to school. Like I mentioned previously, Jenelle thrilled our fellow parishioners by walking to the altar for communion. It was a beautiful evening.
And after mass and dinner with Brett's Brother Brad and his family, we had our usual "Christmas Jammie" photos. I sure do hope the kids don't grow out of this tradition soon. Here they are in their new Christmas Jammies.
Jack, Jenelle and Daddy
Jack, Mommy & Jenelle
Kids already ready for bed and wanting to sleep under the tree.
In the evening on Christmas, we celebrated Christmas dinner at the Curran house. Here I am with Jenelle. I am wearing her Angels bow she got as a gift from the Steinkers.
And onto the New Year and Jack's birthday. This year, Aunt Nicki, Jenelle and I took a trip to Pasadena to view the floats. They were beautiful, but it was crowded and not wheelchair friendly. Definitely something to do once in your life, but we may not return again - or at least not with Jenelle.
The Anaheim Angels Float.
Nicki & Jenelle on the shuttle bus. Jenelle sitting like a big girl.
The next day we had a small football party for Jack's birthday. Here is is with his friends.
Here is our new 9 year old.
Last night, with the help of some wonderful friends, Brett threw a party for my 40th birthday.
It was a blast, and we all had a fantastic time - we were up until 2:30 a.m.
We caused so much trouble, a shirtless police officer had to break up the fun.
Oh well, you only turn 40 once, right?
We hope you had just as much fun during your holidays, and in the New Year.
Monday, January 04, 2010
While on break, and with more opportunity to see Jenelle during the day, I decided to try to teach her to swallow pills. Guess what ... it worked! Jenelle is now taking all of her medications by mouth! Her seizure medication is liquid now, and she has adjusted well to the new texture and dose. She sucks it right out of the syringe without missing a drop. Her behavior medication comes in a very small oval pill. I put them on a spoon, then follow them with her sippy bear cup. She swallows them down and shows no sign of having a problem with it. If this continues, we could be closer to our goal of getting rid of the g-tube this summer!
Jenelle got a lot of musical toys from Santa and seemed a bit overwhelmed in the few days that followed Christmas. She has a couple new favorites now, but also prefers some old ones. It is just so remarkable to see how well she is doing. I smile every day just knowing she is in my life.
As for me, I started back on my chemo meds shortly after Christmas, and after my neutrophils returned to normal. I just finished a 15 day antibiotic, and I think that helped get me through the holiday without serious illness. I am due for another follow up, but am still waiting to hear from UCLA on the date.
Brett and Jack are just great. Jack turned 9 on New Year's Day and we had a small flag football party for him. I'm not sure who had more fun, the kids or the Dads. Brett is gearing up for another year of Little League and is currently at a Coaches' meeting. He seems to be happier these days and we both can sense the feeling of a fresh start in the new year. We also feel this year will bring many wonderful things for all of us.
On a final note, as some of you know, I will be hitting the "Big 40" this weekend. Instead of an age most people dread, I look forward to celebrating this year and many more birthdays to come. In honor of my birthday and my one year in remission, I am asking friends and family to consider a blood donation during the month of January in my honor. Please let me know if you do this so I can be sure to thank you!
Thank you for the thoughts and prayers. I'll post Christmas photos as soon as I get to it.
As always, I'll keep you posted!