Thursday, October 22, 2009

Happy 7th Birthday Jenelle!

As I was uploading the video below to share for Jenelle's Birthday today, I heard a huge "thud" in the hallway. Apparently, Jenelle fell into the door in the hall, and that is not unusual for Jenelle. A few minutes later, Jenelle sat in front of Brett (who was sitting on the couch) and all of a sudden, he noticed blood running down her back. Jenelle had split the back of her head open.


Given that Brett cannot lift her right now because of his shoulder surgery, I took her to the ER, where Grandma met us to help me. It was not a good night for the ER. We signed in at 9:30, and didn't see a doctor until 1:00 a.m. I joked with the nurses that the wait was so long, Jenelle arrived when she was 6 years old, and left when she was 7!


After a lot of Lidocain, the doctor put in 6 staples. Jenelle giggled through the process. In all, she never cried or showed that she was in any pain. This child is truly remarkable.


I'm sure Jenelle didn't really want staples for her birthday, but so far that is her first gift. In honor of this special day, I wanted to share some recent video of Jenelle giggling. And just for fun, I have a photo to document her ER experience this evening. As you can see, she is all smiles. Thank you for all your thoughts and prayers.


Happy Birthday Boo - We love you!

video


Monday, October 19, 2009

Busy days and a Follow Up

Life has been extremely busy lately. Illness, sports for Jack, surgery for Brett, and a trip to UCLA for Jenelle... not to mention increasing hours at work for me.

Last Tuesday, Brett had routine shoulder surgery for a rotator cuff tear. Originally, the doctor thought his recovery could be 6 months or longer. As it turns out, the tear was not as bad as he originally thought. Brett's recovery looks to be 4 to 6 weeks now instead of months. Finally, some good news health wise. Brett did well with the surgery, other than having an adverse affect to anesthesia. He's having some pain, but is doing well.

I had my follow up blood draw last Monday. It appears decreasing the Methotrexate did the job and my neutrophils are back up to a better level. I've been doing well and am trying to fit in more hours in my work day I'm not needing naps as much, but still get tired. Trying not to "over do" gets more difficult when life slowly gets back to normal. Taking care of the kids and working is pretty much a full time job.

On Sunday, the family participated in the Children's Hospital of Orange County Walk in the Park at Disneyland. We were able to get there on time (at the crack of dawn at 6:30 a.m.) and only walked half the walk so as not to tire me out. After the walk we ate at IHOP, then went home where I took a 4 hour nap. I must have needed it.

And today, I drove Jenelle to UCLA by myself for a follow up with Dr. Shields. Jenelle's appointment was at 1:00 and we had tickets to today's Angels game against the Yankees at 1:15. Last Friday, I called to try to reschedule, but was told that Dr. Shields was going into "semi-retirement" and we had the only appointment left on his last day. Not wanting to miss seeing Dr. Shields, I told Brett to take a friend to the game and we didn't reschedule. When I told Dr. Shields that he was better than tickets to the Angels ALCS game, he told me he would have cancelled his appointments and gone with me instead! In all these years that we've been seeing Dr. Shields, I never knew he was an Angels fan! No wonder we love him so much!

Jenelle had a great follow up. Dr. Shields agreed it was a good idea to try to get Jenelle onto liquid meds so we could eventually get rid of the g-tube. As it turns out, his "semi-retirement" means that he will be taking the rest of the year off, and returning next February to a part time schedule. He would like to stay with Jenelle as long as possible, and that is just fine with us. As always, he was very proud and impressed with all that Jenelle is doing.

Traffic up to UCLA was really light. We got there early, so Jenelle and I had a slice of pizza (her new favorite meal) in the hospital cafeteria. As we walked out, we ran into my oncologist. She was confused when she saw me because my next follow up isn't for another two weeks. Once I explained that Jenelle was seeing her doctor, she was very happy to meet Jenelle. What a wonderful place this has been for our family. We have so much to be thankful for at UCLA.

Thank you for the donations to the CHOC walk, and for the continued thoughts and prayers. I'll keep you posted.

Thursday, October 08, 2009

Seven

Recently, I was playing around with the settings on this blog, and decided to change the Archives on the right side to a "hierarchy" setting (a setting that shows the years and numbers of posts instead of the scroll down menu I was using.) I thought to myself that showing the years of entries that I've typed into this website would make me look like a more accomplished writer. Like a more reputable blogger since I've been doing it for a few years. Then, I counted the years listed on the Archives section. Seven years. And it hit me. Our little girl is going to be seven years old.


As we began this journey with Jenelle when she was just six months old it was hard to imagine age seven. Instead of seeing all the entries I've made here as a testimony to my own personal writing skills, I realized that we are looking at the very seconds, minutes, days, months and years of Jenelle's life. In seven years, we have had heartache, denial, acceptance, tears, happiness and triumph. Every letter, every comma, every word and every paragraph is a moment in her life.

Sharing her life on this blog, with all the positives and negatives, has been such a blessing. Writing has always been therapeutic for me, but knowing that Jenelle's story brings hope to others makes me feel like the heartache is worth it somehow. I hope you all know that sharing her with you helps me cope, and helps me survive.

I've always been an optimistic, glass half full type of person. You can't teach that kind of attitude, sometimes you just have to be born with it. But a positive attitude helps one survive raising a child with special needs. And instead of dreading the worst, we celebrate the best. Because you have to realize that Jenelle's life is a gift to us all. She is a miracle, and I couldn't be more proud.

Monday, October 05, 2009

Another visit to UCLA

I had a follow up appointment today with my oncologist at UCLA. Jack did not have school today and decided to tag along for the ride. He wore his UCLA sweatshirt and was hoping to see quarterback Kevin Craft on campus. It sure has been fun spending time with him and I was glad he came with us, so he could see the place and meet the doctors who have helped me get better.

The visit was a good one, except that my neutrophils are very low and my white blood cell count is borderline low. Brett and I have been fighting a sinus cold that has been going around and he has had it worse than me. Last week Brett was in bed three days with a fever of 102, sore throat, stuffed sinuses and a cough. I had the sinus and cough, but no fever. The doctor thinks that my counts are low because of my chemo meds, so she wants to lower them and re-test my blood next week. Also, because of the low neutrophils and with me fighting off this sinus thing, they put me on anti-biotics.

Jenelle has been doing very well these days and is eating everything possible. It is like she finally understands that chewing will allow her to eat more interesting foods. Last week's menu included pizza, popcorn, ground beef, French toast and pancakes! She loves food! Jenelle has an appointment coming up in two weeks with Dr. Shields. We plan to talk to him then about switching to liquid seizure meds to see if she can tolerate swallowing them. If so, we may start considering removing her g-tube in June when we see her GI doctor. What a milestone that would be! Right now, we've only been using her g-tube for medicine because she is eating well and drinking most of her formula from a straw.

Jenelle had her annual IEP last week. She accomplished 8 out of 15 goals from her last IEP! she continues to improve in every area and we couldn't be more proud of her and the team of teachers that work with her every day. We love the results we are seeing.

That is all for now. I will keep you posted on my lab work next week. Thank you for the continued prayers.