Friday, May 25, 2012

Special Needs Spotlight: Levi and Georgia

  
Hi, We are the Jensens!  Curtis and I have been married for 12 years.  He is a computer guy who likes to surf on the side and I am a Mom (and quilter when I have a moment) to our 2 kids, Georgia and Levi. They are twins…although they couldn’t be more different, opposite in every way, these two kids keep our lives busy, busy, busy.  They are 6 years old and I feel like we have already lived an entire life time in those 6 years with all that has happened!  Both Georgia and Levi were diagnosed with Autism at age 2, Celiac Disease at age 3, along with several food allergies, and Levi was also diagnosed with severe epilepsy at age 2 and Leigh’s Disease at age 3 ½ (a mitochondrial disease).  What a roller coaster things have been, but still an amazing ride.  Somedays are tough, really tough…others you just feel so grateful for the chance to have them in your life.  I love the moments when they giggle or are so silly they just make you laugh.  Levi has little to no language, which adds extra challenges.  Georgia has been a little miracle and has grown leaps and bounds and is now mainstreamed in a normal classroom and doing very well.  She is recovered, although still managed with diet (for the Celiac Disease) and occasional medications for things that pop up from time to time.  You can read more about our family on our blog here.    
  
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Miggy:  Can you take me back to the day your kids--twins no less!--were diagnosed?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now? 

Alaina:  Oh Yes, It was a very surreal experience.  Both kids were born healthy, but unfortunately because they came a little early at 35 weeks--Georgia weighing 4 ¼ and Levi at 4 ½ pound--they did have to stay at the hospital till they reached the 5lb mark and were able to eat on their own which was about 2 weeks.  Things went well the first few weeks.   Then the colic set in.  They cried constantly for months…I remember at about 6 months…things got marginally better…at 12 months again, marginally better….but crying was the norm.  Georgia seemed to be doing okay at 6 months…though still an unhappy baby, Levi however was behind on milestones.  At 9 and 12 months, Georgia was still doing fine (starting to say Dada, getting happier, but Levi continued to fall behind on milestones.  We felt like something was wrong, but the doctors were not concerned.  Georgia started walking at 13 months.  And that really increased her independence and improved her mood, although from the start she was walking on her toes.  Levi at 13 months, only just started to crawl.  He couldn’t hold his head up till about 9 month and really lacked muscle strength in general, was abnormally flexible and suffered from horrible reflux.  At 15 months however things took a dramatic turn for the worse, not just for Levi, but for Georgia also.  I went to their appointment and begged the doctor for help.  I told her what we were seeing with Levi (appearing to be deaf, not responding to loud noises…or over responding to the smallest noise, scooting up to the wall and banging his head until we stopped him, indifferent to pain, didn’t want to be held, horrible reflux, constant diaper rashes, bad diapers…the list went on).  Things were so bad with Levi that we didn’t realize at that point that things were progressing with Georgia.  The doctor was anything but nice, said there was nothing wrong but reluctantly gave me the number to early intervention.  They came out the next month for Levi, and at 16 months was scoring in the infant range on all their tests.  Still no diagnosis though.  They started an infant program of speech, ot, pt and infant play for 5 hours a week.  At the kids 18 month appointment Georgia was falling behind on milestones, she lost her words, and replaced them with this screeching sounds.  She also didn’t seem to understand anything we said, was overly hyper, pulling out her hair, and eating her crib (huge chunks out of the wood).  So again at 18 months, I called early intervention for Georgia, they came out, and again she was scoring 6-12 months behind what she was supposed to be.  So they started her program.  But again…no diagnosis at this point. 

The moment happened at 22 months.  I was at church.  I had Levi out in the hallway.  He was still crawling at that point.  I saw my friends little 12 month old boy.  I watched him walk up to his dad, hold up his arms and say “Dada”.  In that moment my world came to a crashing halt.  I literally felt like God had taken me by the shoulders and was shaking me, saying “Look! There is something wrong and you need to do something about it NOW! There is no time to waste!”  I knew in that moment they had Autism.  Never had we experienced anything like that simple interaction with Levi or Georgia.  I took the kids home after church, put them down for naps and turned on the T.V. to try to get this horrible thought of Autism out of my head.  The show that first came on was “Mercury Rising” you know, the one about the Autistic Boy.    I thought…”OKAY, OKAY, I got it, I’m listening, what the heck do I do now?!”  Curtis and I talked, I jumped on the computer and researched into the night, and did every moment of every day for the fist few months.  By the grace of God, we came across the GFCF diet that night.  We started 2 days later, and by Golly, we had 2 very different kids.  AMAZING is the only way I can describe the effect we saw.  Once unhappy, un-interactive, stimmy kids…became happy, giggly, smiley, affectionate kids literally within 3 days. 

We feel so blessed that we actually got their diagnosis’ in reverse.  Autism being the culmination effect of everything going on internally, and so we were led down a biomedical path to treat Autism.  Rather than learning about the Mitochondrial Disease and being given no hope, no treatment…and likely having a much grimmer outcome.  Even the Celiac Disease, which I had never heard of, would have likely gone undiagnosed until the kids withered away.  We found out about Levi’s Seizures at 24 months, it was shocking and not at the same time.  It explained a lot about things I had seen, that the doctors told me not to worry about…the seizures have been our greatest battle and continues to be.  They are not under control and he has been given the label of intractable epilepsy (failing multiple medications).  And his current neurologist has given us their last ditch options which were not good.  And so we continue to work with other doctors who keep up on the latest research and trials.   





Miggy:  Explain how Levi's and Georgia's specific special needs affect your day-to-day life?  


Alaina:  Day to Day life with Georgia is fairly typical…just be ready to have your ear talked off.  She literally talks non-stop about every subject, especially dragons and dinosaurs.  She loves national geographic shows and will tell everyone about what she learned. 

For Levi, we still have to care for most all of his needs.  Like you would an 18month-2 year old.  He needs help with eating, dressing, bathing, brushing hair and teeth, putting on shoes, sometimes he still needs help getting in and out of the car.  He loves to play outside, but tires quickly, so we keep a stroller for long excursions.  Over stressing his body and muscles means more seizures. 
Levi’s last EEG in January showed over 1000 partial and complex partial seizures a day, and 1 Grand mal Seizure during the night.  It is amazing that he is still able to function, but he is a ROCKSTAR.  Over the years the goal has changed from trying to recover him (which we may or may not be able to do in this life) to making sure that he is happy and having fun.  Part of the way we help him be happy, is by making sure that he feels good and that he is healthy.  So we still continue to try new innovative treatments to move him in that direction.  Some work, some don’t, but we just keep moving along.  The seizures unfortunately continue to get worse, despite our efforts.  Prognosis for Leigh’s Disease is poor and uncertain, so we try not to worry about that, while continuing to look for new ideas, but also realize, that despite our best efforts, we may not be able to gain control of the seizures.  




Miggy:  What are the biggest worries you face for your kids?    

Alaina:  I don’t worry about Georgia, she is quite a spirited child and always calls it like it is. 
For Levi, I worry that people will only see the lack of language and Autism and just assume that there isn’t much to him, that there is no potential for growth.  Levi has shown us and continues to show us that he understands…that all the information is getting in.  His spirit is not broken, just his body.  He can still learn, he may not be able to get that information back out easily, but it is there.  And it really bothers me when people, doctors and others who interact with him, constantly under-estimate his potential to learn and assume that he just doesn’t understand. 






Miggy:  Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations?  

Alaina:  Just recently, Georgia, who we’ve been trying to explain what seizures are and what they do, told someone that, “Levi just doesn’t have a brain…that’s why he can’t talk.”  Oops!  He isn’t the scarecrow from the Wizard of OZ!  We had tried to explain that the seizures stop his brain from working, and make it hard for him to talk…but you know how little kids sometimes mix things up.  :)



Miggy:  How can people best approach or respond to Levi? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Alaina:  Levi loves to interact with people, he is silly, giggly and sweet.  The best thing is to just talk to him like he is just another kid on the block.  He may not answer out loud, and that is okay.  :)  And I hope that others can be okay with that too.  I love when people aren’t afraid to ask questions.  I have found that kids are actually the best at this.  On the playground kids ask me all the time, why he isn’t talking or why is he making a funny noise...just another lesson we can learn from our kids.  I often will just start talking about him and you can literally feel the person’s anxiety melt away as they start to understand why he not responding to them in a normal way.   


Miggy:  What is the biggest lesson you’ve learned since becoming a special needs mom?    

Alaina:  What lesson haven’t I learned!  I’d like to think that I’ve always been a fairly patient, nice, non-judgmental person, but life with a special needs child has taken those things to the limit.  As well as just being completely understanding of others.  I’m not as shy.  I have “grown a backbone” so to speak.  I stand up to the doctors when something doesn’t feel right, seem right.  I learned the hard way that they don’t always have the right answer and that is okay because they are human just like us.  But as a mom, I know my kid best and if I have that feeling that something isn’t right then I make sure they listen to me now and don’t just tell me “everything is fine”. 


Miggy:  If you could say something to the mom who just starting on this journey of special needs, what would you say?   What would you say to yourself if you could go back in time?

Alaina:  Another lesson I’ve learned is to morn with those that morn and comfort those that stand in need of comfort.  To a mom just starting out I always let them know, how sorry I am and just let them talk about things.  Truly, there really isn’t much that can be said that can “make it all better.”  I want them to know there is HOPE.  Hope for a brighter, better future.  Things WILL get better, usually with hard work, but it’s always worth it.  



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Do you ever feel tempted to bow down at the feet of these mothers and worship them?  I'm in awe of Alaina and want to thank her for sharing her story and her two remarkable children with us.  Between the lines of what she actually wrote I feel like we could all learn a lesson in patience and perseverance.  I also really like what she said about hope for a brighter, better future.  Things usually do get better.  And of course, speaking up to Dr's when your mom gut is telling you somethings not right--you know I'm a big advocate for our motherly instincts!  Thanks again Alaina.

As always if you or anyone you know would like to be included in the special needs spotlight please email me at thislittlemiggy at gmail dot com.

Have a fantastic weekend!        

4 comments:

  1. As always, I am in awe. Thank you for sharing your story and introducing us to your wonderful kids. Much respect for you all.

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  2. What beautiful kids. I love learning about these wonderful families!

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  3. I love Alaina. She is bright, articulate and just an amazing mother. Through this spotlight, she and and I have found one another and I have always appreciated her profound insight on diets and treatments for our little ones. She is a remarkable human being and mother.
    Thanks for sharing Georgia and Levi's story.
    -Kym Frey (Lily's mom)
    Mydelayedfairytale.com

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  4. What an amazing story (I am so happy they are doing better now!). It is good to hear that the celiac diet actually helps ppl and is not just a Hollywood fad.

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