Monday, September 27, 2010
While getting Jenelle ready for bed this evening, I found an old switch toy that she hadn't played with in a long time. The toy (that is operated by a big red button switch so Jenelle can easily activate it) is a light table with see thru color blocks that are used with the light. Wondering if the battery still worked, I plugged it in to find it still working.
I started to show Jenelle the various colors on the light table and tried to get her to activate the switch. She wasn't very interested. As a last effort to keep her interested in the toy, I asked her to "Show me the green one. Grab the green one." She sat still. Thought for a minute, then used her right hand to reach for and grab the green block. It was so exciting! Her grasp wasn't strong enough to give me the block, but she definitely made an effort and choose the right color (out of four on the screen!)
I called for Jack to come see what Jenelle could do. He tried to help her, but I think having an audience gave her a little stage fright. She did make an attempt when Jack asked for the yellow one, but started to be interested in other toys.
So exciting to see Jenelle doing new things. I just know that she understands what we say, just how to make that communication connection. That is all we need to figure out!
Thanks for continued thoughts and prayers. I'll keep you posted!
Monday, September 20, 2010
On Saturday, Jenelle was very cranky and her runny nose was pretty bad. Fearing she might have an ear infection, I took her to urgent care where we had the quickest visit in history! The doctor checked her ears and they were fine. Because she has not had a fever with this runny nose, we're going to chalk the runny nose and increase in seizures up to a viral cold.
Unfortunately, she has now passed it onto Jack and me. I was supposed to re-start ATRA today (my vitamin A chemotherapy) but decided to wait until the I'm feeling a bit better. Ah, the joys of back to school.
Speaking of school, Jenelle's IEP last Thursday went exceptionally well. Our school district finally signed off on her IEP and agreed that the best placement for Jenelle this year is to remain in her current program with the County. Jenelle has met 15 of 25 goals, and her physical therapy is going to be "decreased" because there is not much more they can offer her at this time. I know that sounds strange, but when Jenelle arrived at age 3, she couldn't sit up, she couldn't stand or walk. We often wondered if it would even be a good idea to try to teach her these things, but as she improved and grew, she got brave and eventually overcame the odds. Her physical therapist will continue to help Jenelle with stairs, but for the most part, she has mastered sitting, standing and walking. She's our miracle girl!
That is all for now. I'll keep you posted.
Saturday, September 11, 2010
As it turned out, the original headache I suffered from over last weekend until Wednesday was from the Biaxin. A nasty little side effect, and I'll make a note to myself to never take it again. But as my original headache began to subside, I was sidelined with a different headache pain. Intense pressure in my head that was worse when I stood up or was moving. This my doctors have determined was a "spinal headache" as a result of the spinal tap I had on Tuesday. Joy!
As mentioned, I started ATRA (my Vitamin A chemo) on Monday because I am scheduled to take it every three months. A side effect of ATRA is that you can get dehydrated easily. You have to double your water intake with ATRA and even then my skin is flaky dry. Once my oncologist realized I was suffering from a spinal headache, she stopped the ATRA. I need to stay hydrated, and taking a medication that will dehydrate me won't help. Even if it is chemo.
Like I said, today has been cautiously good. I'm still a bit fatigued, but at least I have an appetite, and I'm drinking my fluids. I hope this means I'm out of the woods, and that I can make it to work on Monday (and to Brett's office to get my car!)
Thank you all for the continued thoughts and prayers. I'll keep you posted!
Wednesday, September 08, 2010
The medication changes for Jenelle have gone smoothly thus far. It took a few weeks, but we finally got her on a proper dose of Risperdol for her behavior. The difference is amazing. The sad part of the medication increase is that Jenelle appears docile, and "drugged" most of the time, which is most certainly the case. But with the overall calmness in her, is seems she has more control of herself. Not as much kicking and biting (which is good) and less pulling her hair out too. Now that we've finally mastered the right dose of Risperdol, we are going to start the Vimpant next week.
The summer passed for Jenelle pretty smoothly as far as seizures are concerned, but we had a few hiccups with her mic-key button/g-tube. One Saturday morning in August, Jenelle and I were home alone, while Jack and Brett were at football practice. We had a lovely morning and I had just fed Jenelle lunch. After lunch, I was planning a trip with Jenelle to the grocery store, and as we walked down the hall to the garage, I saw something on the floor in the hall... her mic-key button! Apparently, it had fallen out!
Immediately, I got our spare and took Jenelle to her room so I could reinsert it. I'd been told that if they are out longer than an hour, the hole to her stomach can seal up. I had no idea how long it had been out, but realized that when I fed her lunch, I didn't notice any "contents" oozing from her stomach, so it could have been a while. I tried to insert the replacement mic-key button, and it wouldn't budge. So, off to the ER we went where they saw us immediately. Since Jenelle has had her mic-key button for 5 years, the ER doctor told me it was unlikely that is sealed up. They applied a little lidocaine, and with a lot of effort they were able to get her mic-key button in! Jenelle giggled throughout the process.
The following Monday, I called our medical supply company to order a new replacement mic-key button, and they said they did not have authorization and that we'd need to see her GI. Luckily, Jenelle got in for a cancellation appointment the next day and we saw Dr. Idriese. Jenelle was due for her annual visit anyway.
All year I had been planning to ask Dr. Idriese if we were ready to completely get rid of the mic-key button. Jenelle has been taking food and medication by mouth for months now, and in light of our recent emergency, I thought it would be a good idea. Dr. Idriese didn't agree and made me realize that Jenelle will always be medically fragile, and if she were to get sick, she would get sick very fast so it was good to have a safe guard in place. Dr. Idriese was very impressed with Jenelle's new eating skills, and said that Jenelle was actually a "little overweight" on the chart for her age! (HUH?) If you've seen Jenelle in person recently, you know that she is far from overweight. If anything, she is so muscular, the muscle mass could be the factor on the scale. Anyway, Dr. Idriese took Jenelle off Pediasure and wants to see her in 3 months to make sure she is getting enough vitamins.
Jenelle has had a wonderful summer and is doing more new things. Recently, she has started reaching out and "retuning" hugs. She will actually put her arm around your neck. It is absolutely adorable. Also, Aunt Nicki was the proud recipient of Jenelle's first kiss (that Jenelle planted on Nicki!) Jenelle is just a love bug, and very happy. We couldn't be more pleased.
As for me, my summer has not gone so smoothly. I caught a cold/sinus infection in June and it just hasn't been easy to get rid of. When I last saw my oncologist, she told me she wanted to start seeing me every two months instead of every month. This had me very excited until the nurse practitioner called me in August to know why I hadn't been in to see her. Apparently, I still have to make the trip to UCLA every month, I just get to see the doctor every other month! So, I went to see the nurse practitioner, Karolina last Friday and all was well except that I had another sinus infection. This is my 4th sinus infection since June, so Karolina wants to get me into an ENT to make sure all is well. She prescribed me a really strong antibiotic on Friday (Biaxin) for 14 days and she wanted me to start again on the ATRA (Vitamin A Chemo) on Monday.
I started Biaxin on Saturday, and noticed that I started to have a dull headache throughout the day. We had a wonderful Labor Day weekend with lots of swimming and parties, but nothing stressful. On Monday, I started my ATRA, and by that evening, I had the worst headache of my life. I started vomiting, and my vision was blurry, so Brett and I paged Dr. Territo. She called back right away and told me to go to the ER.
Because it was close to midnight, I decided to try to make it to the morning. After some sleep, the headache was not as intense, but clearly not gone, so Brett took me to the ER where I got in very quickly. Because of my history with Leukemia, the ER took it very seriously and ordered a CT Scan right away. Prior to the scan I got an IV and a wonderful drug (Dilauted) that made the pain go away. The ER doctor called Dr. Territo and they both agreed, if the CT did not show a tumor or brain bleed, they wanted a spinal tap to rule out meningitis. Lucky me, the CT scan was clear (or "anatomically" correct as Brett argued with the doctor because Brett refused to believe I had a normal brain) so they prepped me for the spinal tap.
Compared to an epidural, and a bone marrow biopsy; the spinal tap was a breeze. I had to lie flat for an hour after and to wait for the results - which were normal. They did send some of the spinal fluid out for a culture test, but I won't have that result for another day or two. Having had cancer, it's one of those things we've learned all too well with Jenelle that you have to rule everything out as they could get out of hand quickly if undiagnosed. I'm relieved it isn't something serious, but am still in pain with the headaches that come and go. I spoke to Karolina today, and they have decided to stop the Biaxin. I hope that is the culprit, and that tomorrow is a new pain free day!
So, that should bring you up to date on the Curran Girls. Jack started school last Thursday at a new school and absolutely loves it. Last May, we decided to move him to our local public school so that he could be with friends from Little League. So far, the change has been great! He and Brett are both busy with football, and slowly we are getting into the coming Fall season.
Jenelle starts school tomorrow in the same program that she was in last year with the County. Her IEP is next Thursday, and Tustin Unified would still like to move Jenelle to a new school. Obviously, with the changes we plan to start with her seizure medications we would like to keep Jenelle in her same school, and in an environment where her teachers and caregivers know how to recognize her seizures. Hopefully the District will agree.
Thank you for continued thoughts and prayers - I'll keep you posted!
Wednesday, September 01, 2010
Here is a photo I managed to snap between the chain link fence. Brett coaching 1st base, Jack on 1st base and Curran Field in the background.
Almost the perfect Christmas Photo - just missing Jenelle who was asleep in the shade. Here we are posing after the game in front of the Curran Field scoreboard. And yes, for those that don't know, the field was named in honor of Brett's family, and all their many years of volunteer work for Little League and North East Santa Ana Little League.
It certainly was an All Star Summer with the 2010 MLB All Star Game in Anaheim this year. We took Jack and two friends to the MLB Fan Fest at Anaheim Stadium during the All Star Break and it was quite a treat for the serious baseball fans at heart. The Topps booth handed out free baseball cards to the boys, and in the midst of all the baseball fun, they took off to a secluded corner to "check out the cards".
Here is Jack enjoying our favorite summer treat, Ice Cream Drumsticks, with his friend Cousin Trevor, Tim and Connor.
Nana and Poppa George (my Mom and Dad) stopped by for breakfast on July 5 on their way to my cousin's daughter's wedding in San Diego. Although Mom wanted IHOP, I made some great pancakes at home.
Here is our sweetheart on 4th of July - loved her pony tails this year with the red, white and blue "firework" hair bows.
And during 4th of July weekend, we took the kids to "Big Bang Friday" at the Angels game. Here I am with Jack.
Daddy & Jenelle
Daddy gets the best laughs from Jenelle. She really enjoyed the game and the fireworks.
That is all for now, but that is not the end of our summer. I'll update more when I can.