Thursday, December 27, 2007
Unfortunately, Dr. Chang's nurse was incorrect, and we are going to postpone our visit with him until February, as it will take 4 weeks to get the results. The procedure was done in the new "short stay" unit at CHOC in the building we watched them build from our room in the PICU two years ago. The facility is lovely and we were quite impressed with all the changes. It's been so long since our last admission to CHOC (two years) that thankfully we were able to really enjoy the new changes.
Earlier this morning, Jenelle had her annual eye exam with Dr. Ching. If you recall last year he was unimpressed with her tracking skills and said that she was still cortically blind. Today he was thrilled to see her progress and agreed that she is finally tracking! I asked him about the difference between today and last year, and he said that last year she really didn't have much control of her tracking and there was no consistency. Today, she followed the toy he showed her and even reached out to touch it. That was quite a thrill for Dr. Ching. She still has cortical visual impairment, but he thinks with her continued seizure control and maturity, she will start seeing better and better. Dr. Ching will see her in another year.
And to end on a funny note, I told Dr. Chang that we had just visited with Dr. Ching, and he replied, "Well after this, I'll send you to Dr. Chong!" Thank you again for your wonderful thoughts and prayers. I'll keep you posted when we have the results.
Friday, December 21, 2007
First, an update - Jenelle will be having her spinal tap to test for Neurotransmitter Disease on December 27! Dr. Chang tells me that unlike genetic test results which can take weeks to come back, we should have these results within days! Jenelle will be sedated for this procedure, so please say an extra prayer for us that she does not have a reaction or complication with the anesthesia. Here's hoping we get some answers, or at least rule out one more thing!
Peace to you all as you enjoy your families this time of year. I want to take this opportunity to extend wonderful holiday wishes and a Merry Christmas to you all.
Click on the photo above to enlarge it.
Tuesday, December 18, 2007
Sunday, December 16, 2007
Saturday evening, Jack and I took Nana and Poppa George to the Crystal Cathedral to see the "Glory of Christmas". Daddy stayed home with Jenelle - we didn't think she'd sit through it. It was a beautiful performance and the church was pretty with the beautiful tree outside. We got the tickets for Mom & Dad's Anniversary. Here they are with Jack outside.
And just because I'm sharing photos, I thought I'd share this great one of the kids with Santa and Mrs. Claus, courtesy of our local Police Department. Each year, they drive up practically to our front door and give out candy canes to the kids. What a treat!
Friday, December 14, 2007
Onto other things - I met with Jenelle's teacher and principal on November 29 for her annual IEP. Usually the term IEP strikes fear and anger in many special needs parents. I am fortunate to say that Jenelle's IEPs have always gone very smoothly. I am told however that next year will be an "evaluation" year where Jenelle will be re-evaluated and tested, so we'll see how that goes. Her IEP went extremely well - Jenelle met and exceeded all but two of her goals set from her previous IEP! Her goals include things like "holding an object for 5 seconds or more, 80% of the time" and "sipping from a straw 80% of the time", etc. Because she is doing so well we created a lot of new goals, so the coming year should be exciting. One of her new goals will be to keep her food in her mouth, 80% of the time.
Her teacher also asked if we could start purchasing lunches from the school lunch program. Apparently, Jenelle is eating a lot of mashed up table foods for them, and usually shares a lunch with one of the other students. I'm still in shock that she is eating so well for them. I may try to stop by to watch her eat sometime soon. The school would like to keep Jenelle with her current teacher for another year or more. I assumed she would be moving onto a new class next year, but apparently the classes are not under any age-restriction in this program. They feel Jenelle is best fit where she is - I couldn't agree more! It is such a relief to have such a wonderful "working" relationship with her educators - whatever they are doing, it certainly seems to work!
Both Jenelle and I have been under the weather a bit with sinus infections. When I took her to the doctor, they wanted to give me a prescription for an antibiotic to use later if she got worse, but as we talked her nose began to run and the doctor told me to start that evening. She is well now and hopefully we will all stay that way for the holiday!
And speaking of "Holiday", I haven't updated about Big Brother Jack in a while. While picking up Grandma and Grandpa Curran's Christmas Tree with Cousin Trevor at Peltzer Tree Farm in Irvine a week or so ago, Jack was interviewed by the Irvine News! The clip can be seen on the Internet - just go to this link and click on December 5. A new window will open with a media player - at the bottom click on "Jump to" Peltzer Pines, that way you won't have to sit through 6 minutes of the news cast. Jack is doing great and really looking forward to Christmas.
Thank you for the continued thoughts and prayers - I'll keep you posted.
Wednesday, November 28, 2007
Here is a photo of Jenelle on Thanksgiving with her Daddy and Godmother Shelly in the background. She had a wonderful day and enjoyed playing with her cousins and getting in the middle of things. I love this photo because her hair looks perfect - Normally it is a messy mop! Lately she really likes for me to dry her hair with the hair dryer (with the attached diffuser for the curls.) She hangs onto the sink and watches in the mirror.
Last Friday we went to the family cabin in Lake Arrowhead, and by Saturday it seemed the altitude brought on more seizures than normal for Jenelle. She also had a difficult time falling asleep so the weekend was rough for her. The weather was cold and both she and Jack have red cheeks.
Tomorrow is Jenelle's IEP at school. I'm not worried about a thing and am rather excited to hear all the good reports I am expecting from her teachers and therapists. I hope we can increase some time for speech therapy, or maybe incorporate assisted technology like switchboards. Over the weekend, whenever Jenelle was hungry, she would crawl to her highchair and wait. While in Lake Arrowhead, we went to church on Sunday. As we opened the door to go outside, Jenelle made for the door and was so quick, she almost got out the door on her own!
We're still waiting on the Neurotransmitter authorization. I spoke with Dr. Chang's office, and we should be hearing from them soon. Today was supposed to be a follow up appointment and they have rescheduled us for January 2. I guess that means we'll get the LP done sometime before the end of the year!
We hope your Thanksgiving was wonderful.
Monday, November 12, 2007
Both Dr. Chang and Dr. Cederbaum at UCLA would like to test Jenelle for Neurotransmitter Disease. This would involve a spinal tap. Normally, a spinal tap is done as an outpatient procedure, but we're talking about Jenelle who is very wiggly giggly. She will need to be sedated for the procedure, and Dr. Chang would prefer to have her stay overnight in the PICU for this test. I told him it was better to be in the PICU as a precaution, as opposed to actually needing to be there. He will submit an authorization request to our insurance, and we should have a date for the procedure once it is authorized. Admission may also depend on bed availability, so it may be a while.
Neurotransmitter disease is an umbrella term for genetic disorders that affect the synthesis, metabolism and catabolism of neurotransmitters in children. These inborn errors of metabolism affect the central nervous system in children and if left untreated can lead to severely compromised neurological function. The symptoms of some pediatric neurotransmitter diseases can be completely treated whereas in other pediatric neurotransmitter diseases treatment can sometimes improve quality of life. Now, the last part where it says "some can be treated" is exciting to hear, but we realize the chance of Jenelle having a treatable form of Neurotransmitter Disease is probably very slim (if she even has it at all), and we don't want to create any false hope. This is one thing that has never been tested on Jenelle, so it is a logical next step.
Jenelle is doing really well and has been standing by herself for up to 5 seconds, and making efforts to take steps on her own. In fact, sometimes when I go to lift her, I hold out my hand and Jenelle reaches for it in turn, then pulls herself to a stand! Finally, some help to save my poor back!
Thank you for the continued prayers and positive thoughts! I'll keep you posted!
Wednesday, November 07, 2007
Thursday, November 01, 2007
The last two years in honor of this month, I've shared with you our experience with Epilepsy while also providing the basic facts about epilepsy and seizure first aid. Feel free to re-read those posts here and here. This year, I want to literally show you what Jenelle's seizures look like. Below you will find a series of older videos I uploaded to You Tube so you can literally see what we are fighting.
Video #1 - Grand Mal:
This video shows Jenelle's Grand Mal. Jenelle hasn't had many Grand Mals in her life, maybe 10 at the most. When she was 18 months old she was tested at UCLA to see if she was a brain surgery candidate. During the testing, we were lucky to capture her Grand Mal on video. This clip is a video of the actually VHS tape from UCLA, which is poor quality. This is only 2 1/2 minutes into the seizure that went 10 minutes requiring oxygen. It starts as a Grand Mal, then moves into an Absence Seizure about 40 seconds into the seizure. The "screaming" you hear from Jenelle during the seizure is involuntary - she was never in any pain. I will caution you, the first few seconds are graphic.
Video #2 - Absence Seizure:
This is a short video clip of Jenelle's Absence Seizure. Jenelle was approximately 3 years old in this video. The typical presentation of an Absence Seizure is that the patient appears to be dazed and confused. Sometimes you can see twitches here and there and sometimes patients pick at their clothes, grind their teeth, or smack their lips during an Absence Seizure. This is one of many seizures Jenelle had that evening during a very bad "cluster." Jenelle suffers from "Cluster" seizures where her seizures come on one after another without much relief or down time. If clusters are not controlled, they can eventually lead to Status Epilepticus, or constant seizure state.
Video #3 - Absence Seizure with Hand Twitch:
This video is of another seizure taken the same night as the above video clip. This was later into the cluster. As you can see, Jenelle is completely out (almost like being asleep) and her hand is twitching.
Video #4 - Infantile Spasms:
This is a very short clip from Jenelle's first Video EEG when she was 10 months old. We were pretty new to seizures, and as you can see I'm practically oblivious to her spasms. The "arching" you see in this video is the infantile spasms, and she did it repeatedly. Infantile Spasms is diagnosed when a specific pattern of hypsarythmia is seen on the EEG.
Video #5 - Tonic/Absence:
This is a video we captured to show Jenelle's neurologist when she started having Tonic (stiffening) seizures and longer absence. The clip ends at 3 minutes, but this seizure went longer and we eventually used Diastat.
Tuesday, October 30, 2007
At long last, here are some photos of Jenelle's birthday party brunch at Disneyland. We ate at Goofy's Kitchen, which is a character breakfast brunch. We kept it small and it was perfect for Jenelle.
The boys were quite smitten with Princess Jasmin!
And here we have Brett's Brother Brad and Grandpa laughing as Brett said he found his new beer drinking mug!
And the whole party - unfortunately Jenelle did not look into the camera!
Earlier that morning, Jenelle and I participated in the Children's Hospital of Orange County "Walk in the Park" fundraiser. The below photo is Jenelle on the tram. Unfortunately, the winds that morning picked up as we were leaving (we had epic Santa Ana winds at reported hurricane force in the mountains.) On the way to the car, our tram was "delayed" due to a falling tree. Only Disney would get out there right away and take care of its "guests."
Monday, October 22, 2007
Thursday, October 18, 2007
Turns out, it wasn't a real fire but rather a faulty air conditioning unit that filled a room with smoke (electrical problems.) The room wasn't even in Jenelle's building. Luckily, the special education classes do not start until 9:15 and the fire was called in shortly after 8:30. So Jenelle and the rest of her classmates (almost all in wheelchairs) were kept on the bus that had just arrived at the school. Apparently, it was quite a mess. More than 30 school buses (short buses) lined up in the parking lot and out into the residential street, and 4 huge fire trucks! Eventually she made it into her classroom once they were given the all clear.
Can you imagine trying to evacuate children in wheelchairs? Oh my! I spoke to her teacher after reading the news, and she said it was exciting and quite a mess as the principal was not on site that day. When I picked Jenelle up from school that day, I asked her if anything exciting happened at school. She simply gave me her best "raspberry." And I think that was the best response for the situation after the fact. So glad it wasn't worse.
Tuesday, October 09, 2007
Please click here to read the article.
Enjoy! And thank you Vicki, for putting down these words and emotions so perfectly!
Monday, October 08, 2007
When I spoke to the lab at the ER and the bacteria was identified. Just before leaving for the game, the ER doctor called after reviewing the results. He felt that Jenelle would be fine with the IV antibiotics she received on Saturday. Also, the second blood culture was clear after 24 hours, which means she could be over the infection (or that it was a contaminant.) We are still waiting for final results (as cultures take a full 72 hours) but it looks like we have safely avoided a hospital admission (knock on wood!)
Jenelle seemed a little better on Sunday, but still lethargic. All of this is just another reminder at how medically fragile she can be. I asked the ER doctor how she could have possibly obtained a blood infection, and it seems the bacteria identified was a "staph type bacteria from the skin" which could have come from an untreated cut or sore. Also, a typical cold virus can always cross into the blood system so that was very likely as well.
Thank you for keeping us in your thoughts and prayers! I'll keep you posted if anything changes!
Sunday, October 07, 2007
At the ER, they ran many tests including a chest x-ray, blood and urine cultures. All the tests returned normal and her CO level was 27, which is absolutely perfect. The ER doctor assumed she had a virus, but said we did the right thing with the symptoms she presented. If she had been acidotic, she would have been admitted for treatment. We made it home at 3:00 a.m.
Saturday morning after Jack's soccer game, we had a message on our phone from the ER. Turns out Jenelle's blood culture returned positive for a bacterial infection. I took Jenelle back to the ER so they could re-do the blood culture to make sure the first wasn't contaminated, and for IV antibiotics just in case. Jenelle has been acting lethargic and of course an increase in seizures, so we assume the bacterial blood infection might be right. I just spoke to the lab at the ER and the bacteria was identified, but they are waiting to find out if it can be treated with oral antibiotics, or if we have to return. Good news though is that the second test is clear, which means oral antibiotics may be OK.
We are trying our best to keep her home - please keep us in your prayers that this can happen. Thanks and I'll keep you posted!
Wednesday, October 03, 2007
OK Angels - You can't do this to my little girl! She has high hopes for another World Series Win to honor her 5th birthday coming soon!
That said, I'm not too worried. When we won in 2002, we lost the first game of each series. It's kind of our thing. However, Friday is a must win. I'm just saying...
Oh, and Jenelle cried like this all through the 9th inning. Then I took her temperature and realized she was running 102.9! Yikes! She fell asleep at 7:00 p.m. and hasn't moved an inch! Poor thing!
Friday, September 28, 2007
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!
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
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
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
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!
Thursday, September 06, 2007
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
Monday, August 13, 2007
As we were walking to the car at the end of our night, I asked Jack if he had fun. He said yes he did. Then he looked up at me, took my hand and said, "Mommy, isn't our family wonderful?" With a lump in my throat, I took his hand and squeezed it. "Yes sweetie, and you are the most wonderful thing in our family!"
Thursday, August 09, 2007
Last Monday, I took Jenelle to her appointment to pick up her new AFOs (with the new hinge) that she was casted for on June 29. Unfortunately, it appears our girl has had another growth spurt and she has already outgrown the new AFOs! At the top by 2 inches! We didn't get to take them home, and we're going to have to wait a week or so for new AFOs to be built. It’s a shame as the new ones were purple this time to match her new wheelchair. Jenelle seemed very excited about them.
Hopefully in a couple of weeks, I'll have new AFO photos to share! Thanks for the continued prayers and positive thoughts!
Monday, August 06, 2007
While we suspected Jenelle might get an award for the "Biggest Drama Queen", her award was for "Improving her Ability to Interact with Her Environment by Reaching out and Touching Things!" (aka she is starting to use her hands!) Here is Miss Jenelle getting her award with her teacher Miss Darlene. Jenelle will continue at this school for one more year, then onto Kindergarten!
Wednesday, August 01, 2007
The Thinking Blogger Award!
6 Year Med: What can I say about Danielle that I haven't already said in this blog? I think next to her own Mother, I am Danielle's biggest cheer leader and fan! This girl will be an exceptional doctor because she already gets the hard part that some doctors never understand - you need to understand your patients and their families! I've learned more about medical school, the profession and the quirks of doctors than I ever imagined from Danielle's blog. And if she doesn't get a great "Match" in May, I may just have to hunt down these hospitals and give them a piece of my mind! On top of enjoying her writing, I feel like Danielle is a good friend too. The difference in our age is barely noticeable when we correspond, and she has a lovely personality to boot!
It's A Wonderful Life: I found Kelly's blog via Danielle's. Of course, how many Kelly's in the world could there be with daughter's with Lennox Gastaut Syndrome? Well, apparently there are two and us and we both call our daughters "Boo!" Kelly reminds me of God's role in all this. She is very uplifting and often gives me reasons to be thankful for this different life we lead.
Just Regular Folks: I love this blog because the whole family gets involved. Most special needs blogs are written by the Mother (with the exception this one and Bennie of course!) Their little girl has Rhett Syndrome and is similar to Jenelle in many ways. There is a lot of love from around the world at this blog. What I like most is that at times it doesn't always talk about the special needs child. Sometimes, we all need a break, and this blog is a shining example of a family doing just that!
Special & Needy: "Co-pays and Canoli" - Yep, that pretty much sums it all up! Mete is a wonderful person and has been a reader of this blog for a long time now. She is a new Mommy too which could explain her absence of late at her blog. I have always loved her blog as it is ever changing - the last theme had a photo of her son's AFOs that I could have taken myself! Mete has kind thoughts and words for all of us and understands everything so well. And of course, she has my sense of humor and that is our best survival instinct I truly believe.
Neonatal Doc: This blog is a recent find for me. The stories are moving and so very emotional. This blog made me realize that sometimes, many parents enter into this world of Special Needs knowing ahead of time or from the start. We had a lovely "honeymoon" as I call it with Jenelle where the first 4 months or so we were convinced everything was normal. I think it was meant to be that way, because had I known ahead of time what we might be facing, I'm not sure I would have gone down this road. Either way you start it isn't easy, but in all there are miracles to be found, and many such stories are told here.
I wanted to note that there were a couple of blogs that I wanted to mention, but they have already been dubbed with this award, so I didn't want to burden them any further. Vicki at "Speak Softly" and Bennie at "A Work of Art". I get a lot of inspiration from these bloggers, and they make me think on more than one occasion. I didn't want to leave them out without mention.
I truly appreciate your comments, e-mails and awards. It is a privilege to share our daughter with you and your recognition gives me so much in return. Thank you!
Friday, July 27, 2007
If you recall, we last met with Dr. Chang in January where he ordered many tests on Jenelle including Fragile X, Amino Acids, Carbohydrate Deficiency and another chromosome panel and some other tests. Nine vials of blood and some urine to be exact. All of the results were normal. When I spoke to Dr. Chang in March, he wanted to wait for the Rhett results from UCLA, as well as for copies of Jenelle's medical records from UCLA. Apparently they sent him 3 inches of documents, and he has a lot of reading to catch up on with Jenelle. We discussed her improvement, and some new symptoms and he believes there are more tests we can run. Dr. Chang wants a new MRI, PET Scan and to order another spinal tap. All of the possible tests he mentioned had really strange names, and I honestly can't remember what they were for. One is a new genetic test for a different type of autism found only in girls without speech, and another will test how her body breaks down proteins. That was all I could remember.
We see Dr. Shields in August, and Dr. Chang would like to work with UCLA on the MRI and PET Scan as CHOC does not have the appropriate radiologist needed for the specific test he wants to order. In the meantime, Dr. Chang spoke to our insurance, and all tests have to be approved first, so once again we have to wait. The problem is that our insurance is limiting him to "one test at a time" so that he doesn't incur too much cost to them should he happen to pick a test that actually turns out positive. Interesting theory - but what about all that poking and prodding to Jenelle? Regardless, once we have authorization these tests could take 4 to 6 months to complete, so at least our girl gets a break on the prodding. I like that he is willing to work with UCLA, and that he is so through in his review of Jenelle. I think we've finally found the dedicated metabolic specialist we need to keep trying to find an answer.
Thursday, July 19, 2007
Tuesday, July 17, 2007
I'm not sure if I mentioned it, but a week before the 4th of July, Jenelle had strep throat. She had a high fever and was crying inconsolably. Life would be so much easier if she could simply point to the part that hurts, or better tell us what was wrong. Instead we go through a process of elimination and eventually to the doctor and/or urgent care. She ended her antibiotic on the 4th of July, and was an absolute doll for the week that followed.
Last Thursday, Jenelle had a half day at school, so she had been at daycare since noon. Around 3:00, her daycare provider called me worried because she had increased seizures and would not stop screaming and crying. In fact, I could hear Jenelle wailing in the background. Our daycare provider has the patience of a saint!
Other than the seizures, Jenelle had been crying like this the two days prior. In fact, I let her cry her self to sleep both nights, because her crying seemed behavioral. Once our daycare provider mentioned seizures, I figured we needed to check her ears and throat. Our doctor was out of the office, so this meant going to urgent care. As soon as we arrived at Urgent Care, Jenelle was happy as a clam. As if she knew we were finally believing her and the doctor would make it all better. I felt guilty writing as our "reason for visit" to be "uncontrollable crying" when she was happy and smiling. No fever, no crying, and five minutes after meeting the doctor, he diagnosed a re-lapse of strep throat and sent us home with a prescription.
And then the guilt sets in. I let her cry herself to sleep when she was in pain! How did I miss that? Probably because she didn't have a fever. Regardless, the guilt was there. At least she is some what on the mend.
My biggest fear for Jenelle is that she may hurt herself internally, and that we wouldn't be able to figure it out. We think Jenelle understands words - perhaps maybe talks in her head, but the words do not vocalize and she cannot sign. Someday we'll figure things out. Hopefully someday soon.
Saturday, July 07, 2007
Monday, Jenelle had an appointment with her G.I. doctor. Jenelle continues to grow and gain weight (bummer for me on the lifting) and is now 41 pounds! Jenelle is now in the 75th percentile for weight! This is amazing for a child that once fell off the weight chart prior to getting her g-tube. The doctor was so pleased, she said she only needs to see Jenelle once a year now to continue monitoring her growth. This is great news for us - one less appointment to keep! Jenelle's feeding by mouth hasn't improved much for us so it looks like the feeding tube will be with us for a while. Speaking of feeding issues, Jenelle took some interest in watermelon on the 4th of July and actually took a couple of bites. Luckily Brett got a great photo, so I can share it with you.
We hope you had a wonderful 4th of July holiday. Ours was enjoyable and Jenelle really seemed to enjoy watching the fireworks. Afterward she was so tired, she was asleep by the time we got home! Thank you for the continued prayers and positive thoughts - I'll keep you posted on anything new!
Wednesday, June 27, 2007
Here is the article:
CHICAGO (AFP) - US researchers have reversed the symptoms of mental retardation and autism in mice by inhibiting an enzyme that affects the connections between brain cells, researchers said Wednesday.
In a series of experiments on mice, the MIT investigators showed that they could undo the brain damage seen in a condition called Fragile X syndrome by inhibiting a key brain chemical called PAK.
In humans, Fragile X syndrome (FXS) is the leading cause of mental retardation and the most common genetic cause of autism -- the complex and devastating developmental disorder that is now being diagnosed in increasing numbers of children.
The study raises the intriguing possibility that the brain damage seen in children with the condition can be rolled back and identifies a specific target for potential drug therapies.
"It opens up a new avenue for drug research to treat this condition," said Susumu Tonegawa, a neuroscientist at the Massachusetts Institute of Technology in Cambridge, Massachusetts, and lead author of the paper.
MIT researchers began by creating a batch of mice that had been genetically modified to have Fragile X, a condition in which the neurons of the brain are structurally abnormal and functionally impaired compared to regular nerve cells.
These transgenic mice had many of the behavioral problems seen in kids with the condition: hyperactivity, attention deficits, repetitive behaviors and poor social skills.
The investigators then cross-bred these mice with another batch of mice that had been genetically modified to inhibit the activity of the PAK (p21-activated kinase) enzyme which is instrumental in shaping the formation of neuronal connections in the brain.
The researchers knew that when PAK was inactivated, the mice developed neurons that had short, fat dendritic spines, with a higher-than-usual capacity for relaying the electrical impulses that pass between brain cells.
In other words, the shape and function of the dendritic spines in the PAK mice was just the reverse of those seen in the brain cells of the mice with Fragile X syndrome.
The researchers gambled that the two abnormalities would cancel each other out, and that's exactly what the experiment showed.
The cross-bred mice had been genetically engineered so that the inactivation of the PAK enzyme began two weeks into the mouse's life cycle, which in human terms would be several years after birth.
Tests and autopsies showed that the PAK-blocking action restored electrical communication between neurons in the brains of the double mutant mice, correcting their behavioral abnormalities in the process.
"This is very exciting because it suggests that PAK inhibitors could be used for therapeutic purposes to reverse already established mental impairments in fragile X children," said Eric Klann, a professor at New York University's Center for Neural Science.
The study was conducted by Tonegawa and a postdoctoral student at MIT's Picower Institute for Learning and Memory and appears in this week's edition of the Proceedings of the National Academy of Sciences.
Jenelle was tested for Fragile X just last December and it came back negative. But this is exciting and encouraging for us. Just thought I'd share this fascinating news.
Thursday, June 21, 2007
Thanks Bennie for capturing what we all feel on so many occasions!
While once again we are left without a real "diagnosis" for Jenelle's issues, we have also ruled out another possibility. We will meet again with UCLA Genetics when we return to see Dr. Shields in August and we'll go from there. At this point, Jenelle has literally been tested for almost everything possible known to the best experts in genetic disorders. We are simply going to have to wait for science to catch up with Jenelle and for a new genetic condition to possibly test for, or for progress from stem cell research and gene therapy. UCLA says they may just keep in touch with us annually, or if a new symptom occurs, or if Jenelle begins to regress. As I've said before, the up side of Jenelle being "undiagnosed" is that her potential remains unlimited. So this is good news.
In other good news - Today marks 2 years since Jenelle's last hospitalization! If you had told me two and a half years ago that we were close to our last hospital stay for a while (knock on wood) I wouldn't have believed you. As Jenelle continues to improve, we can only sit back and enjoy how far she has come!
Last night, our city had its opening night for "Concerts in the Park". These are free, fun events where everyone takes a picnic, some wine, and the kids run free. A year ago, Jenelle could barely sit up at these events.
Last night... she was dancing!
Thanks for the continued thoughts and prayers. I'll keep you posted.
Wednesday, June 20, 2007
This got me thinking – does Jenelle have nightmares? If she were scared in the middle of the night, how would she find me? Because her mind works so differently, does that also mean that she does not understand the concept of fear? Sometimes she cries for no reason and seems comforted by being held. But honestly, until she can talk – we’ll may know. Just another one of those glaring differences between kids like Jenelle and typical kids like Jack.
Sometimes I imagine her mind is much like mine. Intelligent of course, and mature beyond her years. But then when you think of all the aspects of childhood, you have to wonder if she imagines things, or gets scared, or if she is even thinking at all. I wonder if the seizures took that innocence away, or rather that she is blissfully ignorant to the concept.
Summer is in full swing for us as Jack graduated from Kindergarten last week and started summer camp on Monday. He seems to be affected by the change in routine, but for the most part is enjoying summer camp. Jenelle’s school does not let out until the end of July – thankfully only giving them the month of August off. The daycare situation is good for now as Jenelle's daycare provider is thinking about making changes so she can focus more on special needs kids, and keep more children like Jenelle. For now, daycare is secure for August, which was my greatest concern.
Here we are at Jack's graduation. I held back my tears rather well, until his teacher announced a very special guest - the Father of one of Jack's classmates had arrived 2 hours before the ceremony from Kuwait! He was still wearing his desert fatigues, and the journey took him 3 days. That really put things into perspective, and everyone joyfully and tearfully welcomed him home!
I got a message yesterday from UCLA Genetics to call them today, and I am waiting to hear back. Perhaps we will finally have the results of the Rhett Test? I'll keep you posted as soon as I know!
Thursday, June 14, 2007
Jenelle's mobility has really improved. You can tell that she really wants to walk on her own, but she is far from that. Jenelle is getting around the house now by her own form of crawling and/or walking on her knees. Her poor knees are starting to look like elephant knees, and we're looking into some sort of knee pad and/or leggings for protection. She has already worn holes in some of our favorite pants which I've been able to make into shorts - prefect for summer! The other night after putting Jenelle in her room for bed time, I was in our room and noticed out of the corner of my eye a small purple figure coming towards me with a huge smile. I was startled at first then realized it was Jenelle. She is definitely learning her way around the house, and this is problematic at bedtime.
Monday, June 04, 2007
Before the game, Jenelle and I went into Diamond Club (VIP Season Ticket area) with Grandma to snap photos of the parade. At home, when Jenelle was dressed and ready to go, Jack saw her and said, "Mommy, Jenelle is very cute today!" I think all she was missing was pom poms.
After the pre-game parade, we moved down to our seats near the foul pole which were fortunately in the front row of the Terrace Level (in the shade!) It was perfect, and the ushers were very helpful with Jenelle's wheelchair and such. Unfortunately I had to hold Jenelle on my lap like this the entire game (in fact, you can see her determined face fighting me in this photo!) As you know, she is quite giggly wiggly, so my arms felt like they were going to fall off last night after we got home!
A little later in the game when she calmed down, I was able to sit Jenelle in the seat next to me where she held herself up for a good 10 minutes (and gave my sore arms a much needed break!) She is really looking like such a big girl too! A cute little 2 year old sitting behind Jenelle kept grabbing her curl and pulling it down to make it bounce up! It didn't bother her a bit!
Jack and Daddy enjoyed the game, especially Vladimir's walk off home run to win it! Jack actually got cold in our seats in the shade, so Brett took him down to sit in the sun to warm up. After the game, we went to Grandma's to swim and I got to nap in the sun!
So now our Little League season is over - Jack's last game was Saturday. Jack has a new trophy for his room and we can all rest a bit more until next season! I got some good news in that it looks like the Challenger Division for Jenelle may actually happen next year. At the game on Saturday, I spoke to Rex Hudler (former Angels player, now TV announcer) and he was very positive and excited about the new division. I'm sure next season will be here before we know it!
Hope you had a wonderful weekend!
Thursday, May 24, 2007
Kim and Andrew - I am so happy for you and your "third giggly Lily day!" She is so beautiful - I pray for many more days like this to come!
Tuesday, May 22, 2007
I had an absolutely wonderful conversation with a good friend last Friday. We both have been getting through some “emotional” milestones of late, and our talk left me feeling better about many things. In particular, I felt better about being Jenelle’s Mom and about the mixed emotions I’ve been having about all that requires. Thanks Kirsten!
I love both of my children equally and yet so very differently. With Jack we get to experience all the “normal” things in life, and for that I am thankful. I love Jenelle is so many different ways, yet there are feelings I experience with her that sometimes I think are not normal for a parent to have. While I can’t imagine my life without her, I sometimes regret having her in my life as well. And that is a difficult and selfish statement to make, but I’m human, so I'll admit it.
What did I do to deserve this? When I was little, my sister and I would sometimes joke and make fun of mentally retarded kids. Not of any one child in particular, but like kids do we often teased and joked about being “dumb” or “retarded”. Of course, my sister always followed our joking with “Be careful, you might end up with one (a handicapped child) some day!” As if God was somehow keeping a mental tally of our jokes, and making a list of what we’d get later in life. The insecure part of me still wonders sometimes if that isn’t true in some way.
Although I never experienced any difficulty getting pregnant, lately I feel that having a special needs child might be somewhat equal to the sorrow associated with infertility. Kirsten explained this beautifully by stating that “sometimes it is hard to make decisions using common sense instead of with your emotions.” Emotionally my heart tells me I want to have another child and that it is worth the risk of having another Jenelle, and yet my common sense knows the percentages and the statistics. And with Jenelle’s good health of late, I need to keep my common sense and remind myself of all the hell we experienced in getting to this point.
It is said that the first year of special needs is the hardest, and I wholeheartedly agree. But with the passing of time, things get easier and harder in different ways. With time I see the personal grief my parents and in-laws have experienced; the mourning of the loss of that “perfect” child. That over time they too have learned to accept things with regard to Jenelle, but the raw emotion is still somewhere beneath the surface, and still a painful reminder of what we lost. We are all coping with that loss, and still hoping to find the answers to what went wrong.
I think my emotions have come about in light of the recent article and the Freedom Walk and in re-living that difficult time. Once again I can see that Jenelle touches so many lives in many different ways. And while I have learned to live with a child like Jenelle, I also selfishly regret sometimes having to make the decisions we do with regard to Jenelle. It's the little things I regret. Little things like going out of town for a weekend as a family, or going to the beach are mostly impossible to do with Jenelle. Simple things like finding daycare become so much more complex. And yes, while there are things to help make caring for Jenelle easier, those things also mask the reality that this child will forever need someone to care for her. And in reality, I sometimes regret having to be that person.
My friend reminded me last Friday that my feelings are normal. I am human, and I am not perfect. It is OK to regret the things that happen to us in life. While it is difficult sometimes not to listen to what your heart wants, the reality is that your common sense usually knows better. And sometimes it is good to live in the moment, like the wonderful moments we are currently experiencing with Jenelle. But we must always remember the hellish journey it took to get here. And as a way to survive our emotions, we can only hope for good things to come.
Friday, May 18, 2007
Now, the great news - with donations still coming in, the 2007 Freedom Walk has raised over $101,000! The Epilepsy Alliance of Orange County has over 25 programs running for individuals and families dealing with Epilepsy. The funds raised at the Freedom Walk go directly into those services, so that they can continue to be offered "for free" to our individuals and families. These services include support group meetings, education seminars, advocate representation at IEPs, music therapy for the kids and counseling for parents. As for Team Jenelle - we raised $4,850! Combined with donations from my firm and from my firm's team, we raised almost $9,000! Thank you again for your support!
Jenelle had a small cold earlier this week and has now passed it onto me and Jack. Other than that, she is doing wonderful. I haven't mentioned this yet (because our daycare provider gets these updates) but in April, Jenelle's daycare informed me that it was time to find new daycare for Jenelle. It is a bitter sweet milestone we knew would come eventually. Jenelle is getting to big and heavy to lift, and with the other children in the daycare ranging in age from a few months told to ages 2 and 3, Jenelle is getting too big for the other kids. We love our daycare provider, and we know she loves Jenelle dearly, but we understand the situation. We are hoping to find a new place by the end of June, and will need care full time for the month of August when school is not in session for Jenelle. I am mentioning this now as the process of finding daycare for Jenelle is taking longer than I anticipated.
We have been using daycare as a place where Jenelle can be picked up and dropped by her school bus, and for care during school holidays and half days. Rather than find a nurse or nanny to watch Jenelle at home, I would prefer to find a setting such as a before and after school care program so she can be with other children her age. Currently I am working with Regional Center and our school district and there are some possibilities. While seizures have become less a problem for Jenelle, her g-tube feedings remain a medical issue that some facilities are not willing to take on. We are currently looking into the YMCA and Child Development Center programs in our District and waiting for in home nursing to help out as well. If you have any ideas or know of a facility that might be interested, we'd be happy to hear about it!
And it seems Jenelle's 15 minutes of fame are up. We received some great response from our community about the article published both in the Tustin News and Orange County Register about Jenelle. The small website where I keep these updates usually has 30 hits or so a week - on the day of publication, we had 750 hits, and 2,500 the rest of that week! The following week, we had over 1,500 hits totaling over 4,000 in the two week time frame! We've been able to help out some local families to get them in touch with the Epilepsy Alliance, and I know the article generated donations as well. What can I say… Jenelle is just so cute, who wouldn't love her?
So that is all for now. I found out last week from UCLA that we should have results from the Rhett Test at the end of this month. Thank you again for your support, your prayers and as always for keeping us in your positive thoughts! I'll keep you posted!
Tuesday, May 08, 2007
And then on Sunday morning I read the news about the 3 children from Ladera Ranch who were killed in a horrific car accident. And later I heard a story about another local child who dropped dead of a heart attack at age 21, and news that a special needs friend of ours is sick again, and then that a child had 3 seizures at the Walk, and so on. I could not sleep on Sunday, because I just cannot imagine losing my children. Jack is so full of life as he is about to finish Kindergarten and is enjoying baseball so very much. And Jenelle - she is doing so well, improving so much, and doing new cute things everyday… I just can’t imagine losing her now.
And then there are the small anniversaries for Jenelle; April 30, 2004, May 10, 2005, and June 21, 2005. I thought with the passing of time, these dates wouldn’t be so emotional. However, they are still fresh in my mind as if they were yesterday. While Jenelle is constantly improving, I am always aware that it could change at any moment.
During the preparations for the Freedom Walk, we asked a volunteer to call some members to ask them to sign up a team to help support the EAOC. Sadly, our volunteer reported that some families responded with, “We’re seizure free now, we don’t need you anymore!” Other families were not involved because they had moved onto other causes affecting their child. While it baffles me that someone could go through all that, obtain the ultimate prize and then never look back - I am also reminded of our looming anniversaries and of the literal hell we’ve been through. So I guess I can understand why someone wouldn’t want to revisit that hell. And as every parent can tell you, it is like going through hell watching your child deal with difficulties in life. And no matter how simple the procedure, the fear is so very painful and so very real.
Those who are young are probably wondering why they should ever have kids. Let me tell you, it is so worth it. The pain, the joy, the pride, the agony, the fear… It is an experience that is difficult to describe and yet so rewarding. My children make me a better human being. And while lately the news has been good and bad, I realize that everything happens for a purpose. And our children touch and change our lives deeply. Shouldn’t we all strive for that?