She's getting so big, so fast!

One word to describe Jenelle these past few months = Amazing.  A few weeks ago, I picked her up from Aunt Nicki's after a meeting and she was asleep on the floor.  As I looked down at her, instead of seeing the little girl I'm used to seeing, I couldn't believe how big she looked.  And before I could say it, Aunt Nicki said, "Gosh doesn't she look grown up like that?"  Now more than ever in her life, I want to make time stand still so I can soak up ever bit of her amazing transformation.

People say it all the time; kids grow up way too fast.  It's hard for me to believe that Jack has 3 more weeks in elementary school and will be headed to Middle School.  That I'm actually looking at adding another cell phones to our plan so he can have one.  I can't believe that this season of Little League is over, and that Jack has one year left.  Time goes by so fast.

In mid April, I saw a story in the Register about a Hummingbird web cam that was following a Momma Hummingbird named Emma, and her two eggs.  The eggs were just about to hatch, and I became obsessed with watching the camera feed.  I had it playing at work in the background of my computer screen and checked in periodically.  Although I missed the first egg hatching, I witnessed the birth of the second baby bird when it hatched during my lunch one day.  Within a weeks time, these babies went from tiny raisin like creatures to something that resembled a baby bird.  As you will see at the website, the nest itself is slightly bigger than a quarter, the babies the size of a penny, and the eggs the size of Tic-Tacs!  I kept in touch with this web cam, and their Facebook page for two weeks, and watched these birds transform from eggs to full grown Hummingbirds.  From birth to fledge, all in little over 21 days.  Time goes by so fast.

Jenelle's seizures have been consistent, and last night after her 3rd two minute grand mal I decided to page the on call doctor at UCLA to decide on a game plan.  The seizures had been hours apart, but it isn't like Jenelle to have so many in one day.  It is always nice to talk the situation over with the doctor so I don't second guess myself.  The on call doctor at UCLA agreed that we should consider using Diastat with the next seizure should she have one regardless of how long it goes.  Sometimes even half the dose of Diastat will give her the break she needs.  Luckily, I monitored Jenelle until putting her to bed and the rest of the evening and morning was uneventful.

At Jenelle's recent GI appointment, we found that Jenelle has gained 6 pounds in the last four months.  That is probably the culprit that is wreaking havoc on the seizure control we once had.  The on call doctor suggested I e-mail Dr. Shields on Tuesday to discuss increasing Jenelle's usual meds since we won't be seeing him until July.  Sounds like a solid plan to me!

In the next hour or so we'll be off to watch Jack's travel baseball team play a tournament in West Covina.  Hopefully it will be a good day for Jenelle, and the Tustin Rampage.  Enjoy your Memorial Day Weekend, and remember to reflect on it's true meaning.  Remember the men and women who have made the ultimate sacrifice in the name of our country, and for our freedom.  Thank you for the prayers and positive thoughts.  I'll keep you posted.

New Normal, New Habits

With Jenelle, we've always been adjusting to our "new normal" as we like to call it. Whenever Jenelle meets a new milestone, or has a set back, it changes our normal routine. And thus, we experience what we call a "new normal. Lately she has been really thriving, and our "new normal" gets easier and easier.

During my first week back to work, the new HR manager at my firm told me to start making "new habits" for myself. "New habits" to be healthier. I've kept those words in mind each day as I slowly adjust to the new schedule. My new habits include drinking more water, eating healthier, and listening to my body when it tells me it needs a nap. I can't help but compare the phrases "new normal" to "new habits." In many ways, they sound similar, but are very different. "New habits" can be made for yourself, while a "new normal" is a change you adjust to. I think the "new habits" are easier.

Like I said, Jenelle is really thriving, especially in her eating. She is really chewing more, and able to tolerate more foods. Her menu now includes pasta, beans and rice, chopped chicken or turkey and pizza! All of these items have to be cut into small pieces of course, but she is chewing and handling it very well. Instead of pureeing lots of veggies for her, I now give her mostly what we are having mixed up in a bowl. This weekend she also grabbed my fork and fed herself. She sure loves her food!

Jenelle is also adjusting real well to first grade. She enjoys using the adaptive switches to play computer games at school, and is being taught to use a switch that activates a voice that says "bathroom" whenever she has to go! Her progress has been amazing, and each day we are so very proud of her.

Jack is doing well in 3rd grade, and is very busy with football and Fall baseball. I hope we don't burn him out, but he sure does love his sports. If there can be one blessing to come from my having cancer, it was the opportunity I had to spend the summer with Jack at home while I was on disability. There are so many times that his needs are thrust to the back burner because of Jenelle. I think he really enjoyed our special outings together. He has matured so much this year, and is such a joy. I am so thankful.

Finally, some photos to share. The first is of Jack on his first day back to school. I think he's getting too old for photos at the desk.

This adorable photo was taken on Brett's birthday. The timing of Jenelle's smile was just perfect.

Here we have Jenelle all ready for her big brother's football game! It is really cool that Jack was #1 last year because now it is the perfect jersey for Jenelle to wear to the games.

Here is a photo of Jack as he fell asleep in the living room clutching his UCLA football. He plays till he drops!

And finally, a new hair update! A few weeks ago I went to my stylist, Chaz, to cut off the fuzz and add some color. I'm learning to style the curl and like the lighter color. I just hope it grows faster in time for my driver's license photo in January!

That's all for now. Thank you for the continued prayers! I'll keep you posted!

More Hair

I was waiting to update on Monday, but realized it had been a while since my last update. Things are going well for all of us and we had a wonderful 4th of July. I rested most of the day and we spent the evening at a friend's home enjoying food and fireworks. The good news from the 4th is that Jenelle enjoyed the fireworks and didn't have seizures - Yay!



Jenelle has taken her door knob turning talent to daycare and has "snuck out" the front door at daycare twice now! Thank goodness they have a gate! The second time she did it, we're told the sprinklers were on, so Jenelle got her own little bath in the process. She is quick!



Jack is having a great summer and really enjoys having me home. He has mostly been doing baseball camp during the day and playing with lots of friends in the afternoons. He is very busy, but loves to tell me goodbye in the morning before he heads out.



I am doing well, but am still shedding a lot of dead skin. A lot of the pain is gone but I'm still really tired and weak. The doctor still has me on a very high dose of Predisone, and that just makes me shaky and tired. I can't wait to see her next week to hopefully start coming off this drug!



And finally, I took a new photo to document my hair growth. It is really coming in now, and is soft, full and curly. I have no idea what to do with it so I mostly wear baseball hats all the time. I think I need a trip to my stylist soon. Here is a photo for you to enjoy - notice there is no gray! ;)

And just because he's so cute, here is Jack at an Angels game enjoying summer!

Thanks for the continued prayers. KCA!

Our Little Steel Magnolia

The other night, I watched the movie Steel Magnolias. For many reasons that movie has always been one of my favorites, probably because I have many amazing southern women in my life that remind me of some of the characters and many of the lines in that movie are hysterical. Those of you raised by a southern woman know what I talking about. However, in watching it again the other night I was struck with how much the role of Julia Roberts reminds me of Jenelle, which of course would make me Sally Field, the mother who vigilantly fights for her daughter every minute of her life.

Julia's character Shelby suffered from Diabetes and even though she tries to stay on top of her health, her body often gets the best of her. Her struggle to try to live a normal life with marriage, children and work remind me of Jenelle's everyday struggles. Jenelle has struggled to accomplish so many amazing and unexpected things even though her brain tries to slow her down. And each time I think of how Jenelle has overcome the odds, I am reminded that she is a special gift and that things could change in an instant. Like Shelby says in the movie, "I'd rather have 30 minutes of wonderful than a life time of nothing special." With Jenelle, we have had more than our share of 30 minutes of wonderful, and I feel so blessed for that gift.

I didn't mean to get too deep with that movie analogy, but wanted to share what I was thinking. Jenelle seems to be doing really well since we increased her seizure medication. She has been a happy little girl of late and is using her hands to play with toys. Also, she is doing more exploring of the house and is finding her way down the hall to her room to play with her toys there. Last Sunday, she made her way to her room and I caught her napping in the sunlight with a toy in her hand. She is very happy right now, and we are enjoying every minute. We are grateful for these moments with Jenelle where she has seizure control and is able to explore her world and enjoy 30 minutes of wonderful.

As for me, I am still home and am starting to worry that I made the wrong decision in not wanting a hospital admission. Last night I started to run a low grade fever, and I've had a sore throat for three days. The sore throat could be a side effect of the chemo (remember chemo attacks all living cells) but I've had a runny "clear" nose to go with. I spoke to Dr. Territo this morning and she gave me the go ahead to start oral antibiotics. She was not too concerned with my symptoms, and told me that the antibiotics should take care of it over the weekend. If not, I am to call her on Monday, or go to the ER if things get much worse. Her exact orders were to stay in bed and drink lots of fluids. That I can handle, and I have to trust her comfort level with this plan.

As for my Mom, she has been moved to a rehabilitation center where she will stay for 2 weeks. Her heart tests were fine and they found some fluid on her lungs, so it is possible she had walking pneumonia, and the shortness of breath caused her fall. Turns out she broke not just her tail bone, but the bone that protects all of the nerve endings in the spinal cord. It's no wonder she has been in so much pain.

So that is our update for now. Thank you for the continued thoughts and prayers. Please send prayers that the antibiotics start working and that I can continue to stay in the comfort of home during this chemo recovery. We're in the home stretch now and I can hardly wait to be done with all this IV chemo stuff.

Thanks again - I'll keep you posted! KCA!

Trip to UCLA for Jenelle

Today was our 6 month check up with Dr. Shields at UCLA for Jenelle. It was a good visit. We spoke with Dr. Shields about Jenelle's new seizures of late, and he feels they may be do to yet another growth spurt. Jenelle has gained 3 pounds, and 2 inches since he saw her last September. Dr. Shields decided to increase Jenelle's Felbatol as we have a lot of room left for an increase of that drug. Brett and I agreed with that since Jenelle has done so beautifully on Felbatol for the last 3 years or so. If after the increase, we continue to see the same seizures, we'll let Dr. Shields know and we'll go from there.

Dr. Shields was thrilled to hear about Jenelle's first word ("Mum") and agreed that we were going to see some differences in Jenelle as she reacts to what's been going on with my cancer treatment. He feels my absence in December definitely was a part in getting Jenelle to verbalize the word "Mum". Dr. Shields wants to check Jenelle's blood work again to make sure her levels are OK, and will see us again in 6 months.

As for me and the start of Round 3, no word yet on whether or not next week is approved. I spoke to UCLA this morning, and they asked me to contact my HMO to help get the authorization approved. I made a couple of phone calls, but still no word. Brett and I were thinking if I can't get approved for Monday, we may have to go ahead with a hospital admission for me to get the chemo, in order to keep everything on schedule for me to be out of the hospital for Jack's First Communion. Isn't it weird how insurance companies work? It's easier to get admitted, clearly something more expensive, than it is to authorize an outpatient procedure. It boggles the mind. In the mean time, we are working on a driving schedule to get me to UCLA each day next week in hopes that everything is approved.

The fundraiser on Sunday was very successful and many thanks goes out to my good friend Erin for all her hard work in planning the event. Brett and I attended the event and it was good to see so many of our friends and family. In all honesty, it was a little overwhelming at times. We are so very fortunate to have such a wonderful support group around us. Thanks again to everyone involved.

That is all for now. I will update when I know more. Thanks again for the continued thoughts and prayers. I will keep you posted.

Home

It has been wonderful to be home, however I am concerned at how this last hospital stay was so difficult on me emotionally. I have a follow up appointment with the oncologist on Thursday, and I am going to ask her if it is possible that I'm depressed. A social worker informed me last week that high doses of Vitamin A can often bring on a swift bought of depression. Judging from all the emotions I had in the hospital, I think its best to check it out fully and talk to my doctor. It isn't safe to fool around with such things.

And even though I'm home, I'm still isolating myself from the general public since we don't know if my immune system numbers have finally reached safe levels. I had blood drawn last night, and should get those numbers on Thursday. I imagine all is well as I haven't spiked a fever, but better safe than a trip back to the hospital if I get really sick.

Since being home, I haven't been sleeping well. I guess I'm still on hospital time; IV change at midnight, blood draw at 3:00 a.m., vitals at 4:00 a.m., etc. I think a sleeping pill is in order for this evening.

And since this is Jenelle's website, I thought I'd give an update on her as well. Unfortunately, Jenelle is showing an increase in seizures lately. We haven't heard her in the middle of the night, but she has had a lot at daycare. We have an appointment for Dr. Shields in early March, so I'll continue to monitor it and discuss it with him then. Perhaps another adjustment in medication is in order.

Thanks again for the thoughts and prayers. I'll update again after our follow up this Thursday.

Jenelle's Tri Annual IEP

(It has taken me a few days to draft this for you all. There was so much to discuss about the IEP, and our lives have been very busy of late. I'm sorry this update is long, but there are many good things to report. Enjoy!)

“Before we start this meeting, I’d like to say something. I hope you know that your daughter is an absolute miracle. In all my many years of being a physical therapist, I’ve had maybe one or two kids like Jenelle. I know that I should never put limits on a child, but when I first met Jenelle 3 years ago, I was convinced there was no way she would ever sit up, no way she could ever stand, and I certainly didn't expect she'd ever walk. Jenelle is an absolute miracle!” ~ Jenelle's Physical Therapist Sarah

An IEP meeting (Individual Education Plan meeting) is a meeting that takes place with teachers, parents, therapists and advocates where a n specialized education plan is discussed and put in place for a child. Every three years, a school district will "re-evaluate" the child in all areas of service, and then hold what is called the "Tri-Annual" IEP meeting. Jenelle's Tri Annual IEP meeting was held on Monday, September 21, and lasted 4 and a half hours. Jenelle's Tri Annual IEP went very well and all of Jenelle's current services will remain in place for another year. After discussing services, we reviewed each of her annual goals, and replaced the ones she has met with new ones. At times it got emotional when we acknowledged how much Jenelle has achieved in the last three year, and other times it was humorous when we discussed Jenelle's unique personality that is beginning to blossom.

So, what has changed with our girl in 3 years? Jenelle has many scattered skill levels. It is hard to pinpoint an exact age of development, but for the most part her scattered skills range from 3 months to 3 years old. By far the biggest changes were with her eating and gross motor skills. Jenelle has almost fully met all of the skills needed in Physical Therapy (gross motor skills) to qualify as having full independent function. She sits up, stands, walks with ease while using a walker at school and is slowly being taught how to use a cane. Once she has mastered stairs and uneven surfaces, Jenelle will no longer need Physical Therapy. Her therapist estimates we will achieve that sometime before her next Tri-Annual IEP. Jenelle is definitely showing consistent weakness on her left side. Although her MRI scans show no evidence of brain bleed, she consistently acts like a child who might have suffered a stoke at some point in utero. Her other biggest achievement - food. Food is a huge motivator for Jenelle, and was mentioned many times, by many different therapists. This kid loves to eat, and is progressing nicely and even mastering the use of a bent spoon. While we are no where near being independent from her g-tube, the changes in her diet and her ability to eat more table foods is comforting and makes our daily life a bit easier. (I no longer have nightmares of us having a major earthquake and me running out of jarred baby food or formula!) In all, Jenelle's gross motor skills have progressed from the developmental level of a 6 month old, to that of an 18 month to 2 year old.

The smallest area of improvement belongs with her fine motor skills. While I was hoping for larger improvement in that, Jenelle's fine motor skills have progressed from the developmental level of a 1 month old to the development level of a 3 to 6 month old in fine motor skills area. She ranks poorly on this mainly because she refuses to use her hands, and her inability to speak. Once they explained in more detail all of the things that need to be met with fine motor, I understood why she scored so low. At our last appointment with Dr. Shields, I asked if we were beyond finding verbal language for Jenelle now that she is older than age 5. Dr. Shields felt that due to Jenelle's delays, and her significant improvement since obtaining seizures control, it would be wise to give her until age 7 to find some spoken language. If after age 7, Jenelle still does not have any spoken words, it would be very unlikely that she will ever be able to speak. While at this point it is a long shot, at least there is some glimmer of hope. Dr. Shields felt it would be best to start to concentrate more on teaching Jenelle how to communicate with assistive technology,and her school has already started this a year ago. When I informed the IEP group of Dr. Shields' recommendation on the speech, they were relieved to hear his opinion, and decided to continue her speech therapy another year instead of dropping it altogether based solely on her age.

With every report from every therapist and teacher (PT, OT, Speech, Vision, PE, and Orientation and Mobility) I heard a lot of similar things; Jenelle is a beautiful and determined little girl who is very social, very busy and will do anything for food. And of course, as Murphy's law would have it, two days after Jenelle's IEP where I told the team it had been months since we'd last seen a seizure, Jenelle had a grand mal. Her first in many, many months. So far, we are watching things carefully and I am chalking this one up to maybe the molar issues. In all, Jenelle continues to do well and we are so blessed to have her involved in a wonderful program at school and through our County Department of Education.

Once we were finished setting goals for the coming year, my brain was mush. I couldn't believe the meeting had taken over 4 hours, but really it all went quickly as it was so fascinating to hear about all the wonderful things Jenelle can do. I left feeling very inspired and very hopeful for our little girl. As mentioned at the beginning of the IEP, Jenelle is an absolute miracle. We are so blessed to have her in our lives.

Thanks for the continued thoughts, prayers and support. As always, I'll keep you posted!

Routine update from trip to UCLA

As mentioned below, earlier this week we passed the 5 year "anniversary" of the day we got the news that Jenelle had epilepsy. I wish I could have told myself back then, that today we would be seizure free, as that might have made the journey a little easier. Today Jenelle had a follow up visit with Dr. Shields at UCLA, and when they asked the date of her last seizure, I really had to think long and hard about it. Jenelle's seizure control has been exceptional, and the last time I saw her have one was maybe a month or more ago. (And I'm knocking on wood as I type that, so you should knock on wood as you read it!)

After celebrating Jenelle's new achievements, and talking UCLA football with Brett, Dr. Shields discussed some of the new behavior issues we are seeing in Jenelle. Specifically, pulling out her hair, the biting, the crying and some small signs of possible early onset of puberty. The behavior stuff is easy to fix, and we are increasing her Risperdol to match her weight increase (Jenelle is now a whooping 48 pounds!) Jenelle ran out of Risperdol a few days ago, so I didn't re-fill it as I was waiting for this appointment. I honestly didn't think it was helping until last night I found a note in her backpack from her teacher asking if we had changed any medicines. Her teacher noted that she did not see the "self control" she had seen previously in Jenelle. That advice is enough for me to agree to give it a longer try.

As for the puberty issue, we have been told that children on seizure meds can often have an early onset, anywhere between age 6 to age 9. Jenelle will be 6 in October, so Dr. Shields thinks a referral to an endocrinologist is a good idea. We aren't anywhere near discussing something like "The Ashley Treatment" (where you can surgically remove female organs to avoid puberty), and Dr. Shields said there are some advantages to consider with early onset. He told us that research has shown for every year you avoid puberty, you guarantee at least 2 inches of growth in height. So if Jenelle were to enter puberty early, it might help keep her small. Again, we are no where near making any decisions about that, but we agree it would be best to start watching it closely now.

Everything else is going great and we will go back to see Dr. Shields in March of next year. Last week, Jenelle started school in the same class as last year with the same teacher. She seems to be happier back on her normal schedule. As for an update on the molars, one has finally cut through and another is giving us some problems. Now that we know what to look for, we've been helping her chew to get them to cut easier. So far, she seems to be taking it all in stride.

Five years ago, we had no idea what the road ahead would be for our Jenelle. The same is true today, but with the love, support, prayers and positive thoughts from all of you we know we will make it through. Thank you so much for everything.

As always, I'll keep you posted.

All pooped out! Literally!

Last night, I noticed that Jenelle's mic-key button (the entrance for her g-tube) was leaking. When I checked it, I realized the balloon was broken and we needed to switch it out for a new button. Something I've done many times in the past. As I pulled out the old one and went to replace it with the new one, some fluid came out to distract my view. I tried to feel my way in and felt some pressure as I pushed it in. As soon as it was in, Jenelle immediately started screaming, crying and writhing in pain. Not her normal reaction to changing the mic-key button, which is usually as simple as changing a pair of earrings. Worried that I may have punctured her abdominal wall or stomach, we ran to the ER.

The wait was a bit long, and Jenelle screamed constantly in the waiting area. Definitely not normal for our girl with a high tolerance for pain. I was sorta surprised they didn't take us right away with her screaming alone. Once we got back into a room, a young intern checked it out and thought she was OK. When the Attending came in, Jenelle immediately became quiet. The Attending recognized us from past visits, checked the site and said it looked fine. He started to tell me me what to look for in signs of infection and was about to send us home when Jenelle resumed her screaming. Having remembered her from past visits, he said that was the worst he'd ever seen her in pain, so he was immediately concerned and ordered an x-ray.

As it turns out, Jenelle was severely constipated and my putting pressure on her tummy earlier that evening when I replaced the g-tube added gas to make her pain worse. Two enemas later we were on our way home around 2:00 a.m. (and after watching all of the Olympics for the evening.) Looking back, Jenelle has been on the anti-biotic and Motrin all week for her teeth, and that may have had added to her constipation. I'm relieved it was something simple to fix. Thankfully all is well, and Jenelle is officially all pooped out!

And in case you were wondering, the teething is going OK. Her pain has subsided some and we are using the Motrin with less frequency. Unfortunately, it looks like she is started to get the molar on the other side as it has started to swell. We're using a teething medicine a friend recommended, so hopefully that will cut back on the use of the Motrin, which while also constipating can upset the stomach with extended use.

That is all for now. Thanks for the continued prayers. I'll keep you posted.

New Equipment & Stuff

Just a quick update. Jenelle got her new AFOs on Monday. The jury is still out on whether or not we like them, but so far she seems to walk better with them. I'm waiting to see what her Physical Therapist says today. The new AFOs have a shorter foot plate then what we had on the old ones (i.e. her toes stretch out past the plastic - something I usually know to look for when its time to order new ones!) In fact, the first thing that came to mind was that if I took another photo of all her AFOs lined up (like above) they would appear smaller. How horrible is it that my first thought is that this new equipment for Jenelle won't look good on her blog! Anyway, the goal with this new design is to get Jenelle to plant her weight on her heel. So far things look good. I'll post photos when I can so you can see the difference.

Not sure if I had mentioned this previously, but we had been waiting for a wheel chair repair on Jenelle's main wheelchair that she uses for bus transportation. Back in April, the foot rest broke off at the metal. Jenelle cannot ride the bus without her foot restraints (bus transportation's rule.) Luckily, our "other" wheelchair we have (the purple one you see most frequently in photos) also has the ability for bus transport, so we've been OK. Well, after waiting for insurance approval to check it out for repair, and taking time off to wait for the repair man, we got some rather bad news. The chair is over 5 years old and the warranty is expired. It was previously purchased by my former insurance, so the new insurance won't cover any repairs, and Jenelle has out grown it. That last part we expected because she has had that first chair since she was 18 months old. Now we have to go through an authorization request for a new wheelchair for Jenelle. Good times! Thankfully we have the back up so it won't disturb her school schedule.

And, speaking of school... There are a lot of things are going on right now in regards to a possible change in Jenelle's services. Unfortunately, I can't say much more than that. Please keep us in your good thoughts on Wednesday, June 25 in that regard as we fight the good fight.

That's all for now. Thanks for your continued thoughts and prayers.

MRI Results

I got an e-mail yesterday from Dr. Shields' assistant about Jenelle's MRI results from April 16. Not surprisingly, the results were "normal" (whatever that means!) His assistant said there were some "sinus issues" noted, but that it was nothing very serious. I've arranged for UCLA to send the films and the report to our metabolic doctor (Dr. Chang at CHOC) as he originally requested these tests be done. We should meet with Dr. Chang in the next month or two so we can discuss the MRI/MR Spectroscopy in detail.

Speaking of "normal" - How's that for timing with Blogging Against Disablism Day? ;)

Jenelle continues to be battling an increase in seizures recently. It's hard to watch this happen as the seizures leave her so very tired. Last Sunday, Jenelle actually took a nap in the middle of the day (after having a rather long seizure that morning) which is very unusual as she rarely naps. All the usual suspects like illness and teeth have been ruled out. Dr. Shields increased her Felbatol a week ago, and since doing that the seizures has decreased a bit, but we're still seeing more than usual. He and I will speak again next week, and determine where to go from there. Please keep her in your thoughts that they don't get too out of hand until we can get control again of these nasty seizures.

Thanks again for the continued thoughts and prayers. I'll keep you posted.