Friday, September 28, 2007

Bad news and Good news!

Well, this week has been a bad one for Jenelle as far as seizures are concerned. Earlier in the week, Jenelle had a bad cluster of seizures ending in our having to use Diastat (her emergency seizure medication.) She had a cluster of seizures that went on for almost 2 hours, but the Diastat did its job! UCLA thinks teething might be the culprit so we are going to continue to monitor these seizures. This is why we have Diastat, and hopefully we can stay out of the ER!

However, onto the good news … Jenelle has made HUGE strides in eating this week! As of last weekend, Jenelle has been taking 3 jars of baby food by mouth each day, and is drinking her formula from a special straw out of the can! Her school informs me that they haven't used her g-tube for feedings at all, and at home, we've only used it for medications or to finish a feeding if she seems too tired. This progress came out of nowhere, and is simply amazing. I honestly think I had given up on any chance of Jenelle ever eating by mouth. She also likes special cheetos, bread and croutons. We think her desire to start chewing was instigated by her teething, so with that in mind, we'll deal with the seizures!

That is all for now. Thanks for your continued prayers - I'll keep you posted!

What to do when you meet a child like Jenelle

Last week end, my 7 year old next door neighbor knocked on our door. When I answered, she was standing there with her friend. She explained to me that her friend had never seen a "mentally retarded kid" so she wanted her to meet Jenelle. When I tell this story to friends,-they wince and cringe! I thought it was very sweet because really, she is only 7. I invited our neighbor and her friend into the house, and our neighbor proceeded to introduce Jenelle to her friend, explaining things like how Jenelle cannot walk or talk, how she cries for no reason, and how she is fed through a tube. She also gave her a tour of Jenelle's room, and her AFOs and stander. I was impressed that she had paid attention to such detail. Again, she is only 7.

Bennie had an anonymous commenter on his blog ask some questions about how to approach special needs families. I must admit, I too am asked similar questions all the time, and of course my answer is complicated. The commenter asked,

Would you welcome interaction with other kids with Ben (Jenelle)? Or would that be intrusive?

How should we as parents teach our kids to interact with kids that may be less verbal?

I am never offended when people ask questions. Being curious and asking questions is the key to overcoming the stigma often associated with a disability. I am never offended by stares, pitying looks or comments - but I am offended when they make assumptions and I'll address that a little bit later.

I welcome interaction with Jenelle, but of course that has a caveat as well. I don’t want a child with a runny nose trying to touch her. She is medically fragile and she just can't tolerate all the germs that might come into contact with her. Usually when a child waves or tries to get her attention, I try to explain that she cannot see or understand. I explain that she will not respond with words. Sometimes they seem frightened at first, but then they get used to it. I never openly show a child Jenelle's Mic-Key button; usually I ask first if they want to see it. Sometimes this is unavoidable when we are feeding her, and sometimes that is when we get the most stares and questions.

Our biggest problem with Jenelle is that she looks normal. Her mic-key button is hidden, and unless she is in her wheelchair, people usually miss it. This is especially hard with children who expect her to react to smile or wave in response. However, usually with some explanation, they are fine with it. As a parent, I encourage you to teach your child that children like Jenelle are different, but they can still be your friends. Take cues from the special needs child's parents on how to talk to the disabled child, or to explain to your child what is wrong with this child. And as the saying goes, there is no such thing as a stupid question - so ask away!

Assumptions offend me the most. When I over hear someone say "that poor child" or "that poor mother" or "oh look at the little girl in the wheelchair" and I know they pity us. Or when they openly tell me they will pray for Jenelle because they assume her life is tragic. Or when I see other parents wipe away tears when they see us (and yes, I see the tears and your emotions.) Don't assume you know what is wrong with my child. We live a happy albeit different life. Jenelle is thriving and is happy. Do not pity us - pray for our strength, but not for a cure for us. This is the way our life is with Jenelle. And we are more than happy to share that with you.

Our hope is that Jenelle can change people's perspective on life. The world is sometimes so busy trying to be politically correct that that we often get past trying to get to the good in things. Communication is the key and assumptions won't get you anywhere. Next time you see us, introduce yourself, ask a question. We'll be glad you did!

Monday, September 24, 2007

Exceeding Expectations

In 2003, the doctors told us, "She may have a short life and if the seizures cannot be controlled, she may not live past age 5." Our Jenelle will be 5 years old in less than a month. And unless you are brand new to this website, then you know that Jenelle has been thriving, developing and learning new things every day. According to her doctors, she is now "exceeding their expectations in every way." And this is the news every parent of a special needs child longs to hear, especially when given such a grim prognosis in the beginning. Rather than a date we hoped would remain far off in the distance, that "age 5" number is now a symbol of how far we've come.

I think doctors have the most difficult job in the world. They have to be an expert in their field, up to date on the latest research, and carry the hopes and lives of so many in their care. They have to be honest with their families about details few like to discuss. Details like prognosis, quality of life, possible death and coping. I think the best doctors tell you everything good and bad, and along with you hope that your child proves them wrong and defies the odds.

Many friends and family have commented recently on Jenelle's upcoming birthday, and the significance it holds. While I realize we are no where near the reality of that grim prognosis we were given in 2003, I also realize the slim possibility that things could go wrong very quickly. Yet that shouldn't diminish the achievements Jenelle has made and continues to make these past 5 years. We should always keep hope that things will continue to get better. I mentioned to a friend recently that after her upcoming birthday, Jenelle was going to be on "borrowed time". My friend was rather angry with me for saying that. But it is true in a way, albeit very honest and frank. It is all in God's hands and we just get to enjoy the here and now.

I spoke to a Mom a year or so ago who lost her child with Down Syndrome at the age of 23. Her words about her daughter have always stayed with me as she said, "Kelly, don't be sad about her passing. We were blessed to have her in our lives for 23 years! That was 13 years longer than the doctors originally thought! Each day is a gift, and we were blessed to have that gift as long as we did." I remind myself of this frequently - these beautiful special children that enter our lives, and turn our world upside down and teach us new things in life are special gifts that we only get to keep for a little while.

When your child is 10 months old and having 200 or more seizures a day and every medication you try isn't working; reaching age 5 seems a lifetime away. And yet, if someone had told me Jenelle would be standing, crawling and almost walking - I wouldn't have believed them. Not because you believe in the prognosis, but because it seemed so far away it was almost impossible to be true.

The day our neurologist said, "She is doing more than I ever imagined. She is now exceeding expectations", I knew we could breathe a sigh of relief. Instantly I knew that "age 5" was no longer a significant number we needed to pass. And silently, I said a prayer and thanked God for giving us more time with this wonderful, most precious gift.

Thursday, September 20, 2007

New Seizures & Another Article!

I just wanted to give a quick update on our girl. In the last week we've seen a slight improvement with the crying episodes since starting back on Tranxene. Unfortunately, the improvement has been very, very slight. And just because she likes to keep us on our toes, Jenelle has decided to increase her seizures. She is having very long absence seizures (complex partial - the staring seizure) and had a small cluster last Saturday totalling almost 10 minutes. I'm trying to see if there is a connection with the crying and the seizures (i.e. is she crying before they happen or after?) but so far no luck. Last night I noticed and felt what might be new molars coming in, so that could be the culprit. For now, we're just watching her carefully, and if things don't improve over the weekend, I'll be calling UCLA.

And just to brag a little, our story has been published once again. In January, I was interviewed by the national magazine for my sorority, The Trident of Delta Delta Delta. The magazine was doing an article about the "Mommy Wars" to discuss the issues between working and non-working Moms. In my interview, I answered questions about my decision to be a working Mom and expanded a little by explaining some of the difficulties of being a working Mom of a special needs child. I received the Spring 2007 issue of The Trident in August during the time I was busy working on a jury trial. The magazine contained not only the article quoting some of my interview answers, but a sub-article entitled "Notes From the Trenches" where they printed one of my responses in full and gave me a by-line. Unfortunately, they had me confused with another member and state that I went to college at Texas A&M instead of UC Santa Barbara. Because The Trident is not a publication you will likely find at your local Barnes & Nobel, I scanned the article and you can read it below. (Click on the page to enlarge it - my article is on the 4th page.) Enjoy!

Tuesday, September 11, 2007

A full day of Doctors!

Yesterday, we had a full and very busy day with Jenelle. In the morning, we had an appointment to get her new AFOs! What normally takes a few minutes of trying them on, ended up taking two hours to make all sorts of size adjustments. Once they finally fit, Jenelle stood up and was able to take a few steps down the hall - with my help of course! The new AFOs are cute and are blue with butterflies! To show you how much she's grown, take a look at the photos below of Jenelle's AFOs, since her first pair back in 2003.

As soon as we finished with the AFOs, we made our semi-annual trip to UCLA to see Dr. Shields. As always, he was pleased to see us and was very pleased with Jenelle's progress. We told him about her "attitude" lately and he watched some of the video clips of her crying episodes. Dr. Shields agreed that it could be the Tranxene wean. He did not feel she was in withdrawal, because the behavior would be getting better at this point. But, he feels it is apparent that Jenelle needs something to help with behavior and he thinks Tranxene may be her "Happy Drug". So, last night we started a low dose of Tranxene again to see if it would help her attitude and the crying spells. We can raise the dose in a week or so if the crying spells do not subside, but we are to call him in three weeks if she is not completely better. At this point, the Tranxene is not being used for seizures but rather as an anti-psychotic. If it doesn't work, there is another drug we can try.

After our time with Dr. Shields, we had a meeting with UCLA Genetics to follow up on the results of the test for Rhett Syndrome. This time we met with Dr. Cederbaum, a doctor we have not yet met. As I suspected, the Genetics Team basically informed us that they were out of ideas. We discussed some of the tests mentioned by our metabolic specialist Dr. Chang, and they agreed our next test should be the spinal tap to test for neurotransmitter disease. Apparently, Dr. Cederbaum and Dr. Chang meet once a month with other area metabolic doctors to discuss recent trends and cases. So, with our permission they will discuss various tests for Jenelle at their meeting next week. Once they agree on the next test, then we will be waiting for insurance authorization. It is a long, tedious process for sure. Genetics did have some good news for us in that they are very confident that the issues with Jenelle are not genetic in nature. This means the likely hood of her issues being genetically passed onto any future children or to Jack's children is practically nil (3% at most.) So for now, we do not need to meet with genetics again unless the spinal tap gives us new information about possible neurotransmitter disease.

That is all for now! Thank you for the continued thoughts and prayers - I'll keep you posted!

My how she's grown!

Thursday, September 06, 2007

A conversation with Jenelle & prayer request

I wanted to briefly share that I had an exciting conversation with Jenelle this past weekend. A week or so ago, Jenelle started responding back and forth with me by making "raspberry" noises. At first she would respond to my raspberry 3 out of 5 times. Over the weekend, we had a 20 minute "raspberry conversation" where she clearly waited for me to make a raspberry noise, and then responded in kind! She even showed excitement when I responded by bouncing up and down on her bed! For those of you who remember the early days of your child's speech development, this "back and forth" type mimicking play is key to speech development! I will try to get a video when I can to share with you - I'm sure that would be very entertaining!

And yesterday, we welcomed a new baby into the family. Brett's brother and his wife gave birth to a baby girl and have named her Kiersten Breanna. So we have a new niece and a new cousin! Prior to her birth, Kiersten was diagnosed with Hydrocephalus (water on the brain) and is currently in the NICU at CHOC where she will have a shunt placed to help drain the fluid on her brain. Please keep baby Kiersten in your prayers. Thanks!

Tuesday, September 04, 2007

Jenelle in a few years...

The lack of updates here is not because of any Jenelle crisis - I have been very busy working on a trial in Los Angeles, and during these times I am too busy to update. Sorry!

Jenelle is doing well, however, we are still dealing with her crankiness. We are starting to think that maybe she is experiencing "withdrawal" symptoms since we completely stopped the Tranxene on August 1. We weaned her slowly for 6 months, and Dr. Shields did warn me to take it slow. It is a little late to go back to it, but if we finally have an answer that would be great. We see Dr. Shields on Monday (not soon enough - believe me!)

In other Jenelle news, I received a letter last week from Medi-cal informing me that Jenelle was being denied. We annually have to re-new our application and apparently in the last bit of paperwork I completed and sent in, I failed to "verify her identity." The benefits were set to end on August 31, and in order to keep them going I had to "request an appeal." Nice waste of tax payer money don't you think? The case worker couldn't return my 4 phone calls so now I have to waste a day of my time and Jenelle's hauling her into some government building so they can "verify her identity." Brett was trying to be optimistic and thinks maybe they are looking out for her with identity theft and all. I'm sure I simply missed something on the application... still, what a waste of our time. If the case worker would return my call, we would probably have solved all this a week ago!

And finally - a new photo! For a while, we've been trying to figure out who Jenelle takes after from our family. I sometimes see bits of my Father in her face, and the curls are definitely from Brett's Irish side. Recently however, in finding an old photo of Brett's cousin Sheila, we all agree that Jenelle looks most like Sheila. Even in a photo of Sheila's First Communion; it was a tiny Jenelle staring back from the photo.

Sheila helped us celebrate Brett's birthday this weekend (and her own birthday which is today!) Here is the best photo I could get of the two, with a very wiggly Jenelle. Enjoy!