Sunday, October 20, 2013

HOW TO NAMI-PROOF MY HOUSE?!?

Today started out with another poop catastrophe. We have them multiple times a week, and we've already had two today. This morning's poop was spread all over Nami's bedroom, the hallway and the family room. The good news is that my newly purchased carpet cleaner arrived last week and I took comfort in knowing that I could get the floors really clean. The bad news is, Nami tore apart and broke our washing machine yesterday so we don't have a machine to clean his extremely soiled clothing and bedding.

I can't even say that what we've been doing since returning from New York is surviving. We haven't even been doing as well as that! I'm finally starting to pull out of (hopefully for good) the funk that I've been in, and I've started to clean our disaster of a house this past week. I was excited to finally feel like I could REALLY clean because Nami has continually been gracing us with his poop-art that he's decorated the house with.
Whenever he does this I feel pretty confident that I get all the walls and doors disinfected, but I've never been sure about the carpets. So, I finally bought me one of these babies...
...and I've spent the last 4 days cleaning all our carpets, floors and chairs. Although I was frustrated about the mess this morning, I was sure grateful to own this carpet cleaner so I could clean up the mess in a jiffy.

It's difficult for me to not feel bad for myself sometimes as I try to contain Nami. I can't even let my guard down for a second (literally) before disaster strikes. I've blogged about a couple incidents before in A TORNADO STRIKES NAMED NAMI and ONE OF THOSE DAYS. I've find myself wishing over and over again that I could afford to Nami-proof my house. Here are a few reasons why:
  • Despite my efforts to keep Nami contained in, or out, or certain rooms, Nami can now break off the knob covers and escape.
 
  • Meal time is chaotic to say the least. We have to keep the kitchen table pushed up against the counter to keep Nami from knocking everything off the counter. During meal time, I'm constantly having to run back and forth around the counter to pull Nami of the table and/or counter. When dinner is over, we have to fold the chairs up immediately and put them right up and put them up against the wall. Oh, and watch your head at all times so that it doesn't hit the light fixture.
 
  • We try to keep Nami out of the kitchen with this gate. Despite reinforcing in with Velcro and tying rope all the way around the refrigerator and then through the gate. All this has done is buy us about 2.3 seconds extra time to catch Nami before he destroys the kitchen.

  • When Nami does get past the gate, he throws everything from the counters onto the floor and everything in the sink onto the ground. If it is glass, it will be shattered. This past week, Nami got back into the kitchen, grabbed a sharp knife without me seeing, and threw it right at me. It flew within an inch of my face!
  • When I am successful at keeping Nami out of the kitchen (because I stand guard of the gate while working in the kitchen) he will start to get toys and throw them at the items on the counter to knock them off. If that doesn't work, he will chuck them at me. If I don't have food for him right when he wants it, he will go to the fridge and push the water and get everything wet.
  • Not only does Nami throw toys, he throws furniture. This is our start in trying to fix the hole he made in the wall when he threw a chair and the leg went through the wall. Nami kicks and hits the walls so hard right now I fear that he is going to actually end up kicking a hole in the wall. My mom suggested putting metal paneling around the base of our house. It's a good idea, but it made me laugh because I knew we'd have to go at least 1/2 way up the walls in order to protect them. ;)

  • I finally decided I need something for me. I hate being in my kitchen/family room, because it's so stressful. So, I found a very affordable electric fireplace/entertainment center and rearranged the room. Just seeing the fire's flame, even though it is fake, has had a very calming effect on me. This setup will not last. Nami has already started to climb on the speakers to get on top, is messing with all the electronics, and that chair will not be able to remain at the piano. But at least I've been able to enjoy it for two days.
 
  • I still need to fix a couple other things. First, our couches are so worn from Nami's STIMMING. We can't afford new couches, but slipcovers are on the way.

  • I will also need to figure out what to do about the gate at the stairs that Nami tore down this week. We originally put it up because he had a seizure and fell down the stairs a couple years ago. Now the gate is broken. What to do, what to do?

  • It's a good thing I already set up the fireplace, because after Nami's tactics yesterday, I wouldn't have bought it. He somehow got into the laundry room. I usually have a stand in front of the washing machine so he can't get into the machine, but I was in the middle of doing the laundry, so it must have been out. He got in the machine, pulled on the rubber ring and ripped the entire thing in two. Salesi started the next load, not noticing the rip, and next thing we know our entire floor had about 1/2 inch of water on it that had spilled out of the machine. We had to go straight and buy another machine.

I often find myself screaming, "COULD SOMEONE PLEASE JUST NAMI-PROOF MY HOUSE?!?!"

On a happier note, Nami is having so many less seizures! I will take "Nami the Destroyer" (nicknamed by Uncle Jon) over seizing Nami any day!

Thursday, August 29, 2013

MIRACULOUS MAY PART II - GRATITUDE

Yeah, it’s been a while since I’ve posted. I have tried to write. Actually, I’ve written bits and pieces here and there, but I just haven’t been able to get a post together. This was one attempt at writing this post, but I only ended up getting started:

I don’t even know where to start. I am sitting here during Nami’s first tuber resection (basically his second brain surgery in this round), finally feeling like I may be able to write. I know this post is a long-time coming and I apologize for not writing more frequently lately. My train of thought over the past weeks has been something like this: “What to say? How to begin? What is real…my nightmares…my dreams? It’s all blurred together. Time doesn’t make sense to me. My head is so fuzzy…my emotions all over the place. I lose my train of thought. I don’t make any sense. I can’t string any cohesive thoughts together.”

There were so many moments in the months, days and weeks leading up to the surgery that I felt I couldn’t take another step forward. I was emotionally, mentally, emotionally, physically, and, uh, emotionally depleted. I didn’t know that type of exhaustion existed. I swear that even my hair and nails were tired.

I’m surprised I made it through the last month of school. I apologize right now to all my students who had me last semester as I was not at my best. Actually, I was a scatter-brained mess…times 10. I had hours and hours of…

Well, that’s as far as I got. Now I don’t even remember what I had hours and hours of. Probably hours and hours of being on the phone trying to arrange everything between the insurance company, hospital, doctors, etc. trying to get them to agree to the procedures. So far, I’m not sure what good that did. Since being home, every bill I’ve received from New York has been denied by my insurance. I’m so excited to spend hours and hours more of my life trying to figure this out!

Although we’re already now into a new school year, I cannot move on to future blog posts without writing the next part of MIRACULOUS MAY PART I. It was an out-of-body experience to be on the receiving end of such generosity. The school and community pulled together in a way that I have never witnessed and it was all in the name of our son. Although I was always filled with extreme gratitude, it was uncomfortable for me at first to be receiving so much attention. I finally relented to the continual thought in my head that was yelling at me, “IT IS SO HARD TO ACCEPT HELP! BUT, IT’S NOT ABOUT ME, IT’S ABOUT NAMI. I CAN’T ROB NAMI OF THIS HELP JUST BECAUSE I’M UNCOMFORTABLE!” I was finally able to start enjoying each moment after that because it wasn’t about me. It was about a young 4 year old boy who was suffering from nonstop seizures and a community of loving people who wanted to help him. What was even cooler was that it just happened to coincide with Tuberous Sclerosis Awareness Month.

There are no words to express the gratitude I feel for all the sacrifices everyone made for our little family during May’s fund-raising. Here are some excerpts of what I wrote for the school newspaper:

To The PGHS Community:

Our family has been so overwhelmed with gratitude during the last couple of weeks. We feel such a sense of love and community. I have thought long and hard about what I could say or do to express how grateful my family and I are to all the students, faculty, staff and community for the service they’ve rendered us. But there are no words to express how we feel. Anything I come up with seems trivial compared to the relief that this service has brought to us.

There are too many highlights to mention them all. The rivalries of the penny wars were hilarious and livened up the last month of school. I loved hearing excited students come and update me with news about who bombed whom and how everyone reacted.


I felt like I was pushing a celebrity in the stroller at the carnival. The warm welcome of Nami was amazing. All you students were so great with him and I only hope that he will have such great peers to accompany him through school.

There have been so many heart-warming stories: from people emptying their piggy banks, cleaning out their houses for change, digging through garbage cans and going to neighbors for cans. And then the seminary got involved with their own penny wars competition and went crazy. We loved seeing the gym packed with students and adults enjoying an all-nighter of volleyball. We are grateful to all the clubs and organizations that have incorporated this cause into their programs. What a sacrifice to take some of the light off your fantastic groups to spotlight Nami.

We are in awe of the time and effort that so many people put in, especially during the last month of school, to help us. Thanks to the faculty and staff who are spending valuable time they could be grading or closing up school to support the activities. There are so many anonymous people who have donated items, time and money and this is a big THANK YOU to each and every one of you! The financial support has lifted a giant burden. Even more than for the money we thank you for the emotional support and joy you have given us. There is laughter and smiling in our home. This experience is a bright spot in our lives. Your demonstration that you care has given us courage and strength. We will continually reflect on your goodness as we face future difficulties while Nami endures this incurable disease. I am blessed to be in the company of such great young people for my career. The future is bright in the hands of PGHS students. I’m so proud to call PGHS my school!

Much love from the Vimahi Family
                                                        WOW!

There is no way for me to spotlight all that went on because there was so much. I gave a good overview of many of the happenings at the school in my last post, but believe it or not, there's even more:
  • One of the sweetest experiences was with the special education students. No one was more understanding or compassionate toward Nami as these wonderful kids. They have so much empathy. One student frowned so big with sadness for Nami when he met me.
  • Companies and individuals from the community generously donated money and goods when they caught wind of the story.
  • People used social media to spread the word, and we were constantly hearing from my family and friends how people that they knew heard from someone else that they knew that…
  • Poor Rock Canyon Bank was bombarded with more pennies than you can imagine and they joyfully counted them all. I even heard that their workers would throw in some change for the cause. Thanks for helping us out!

  • A bunch of darling kids decided to do a lemonade stand in Nami’s name. Thanks kids! Your hard work paid for one of the nights in New York for Nami.

  • Whatever secret society sent me these, I am so appreciative. They really brightened my spirits.
During the month of May I kept thinking, “Things like this don’t happen to people like us.” Every time I feel like I can’t take another step forward, I have the month of May, 2013 to look to and gain strength to get through whatever challenges we’re facing. Every single person that contributed: big and small; known and anonymously; with money, time, notes, gifts, spreading the word, supporting the events, saying encouraging things to us, giving us hugs…THANKS TO EACH AND EVERY ONE OF YOU!

Tuesday, June 11, 2013

MIRACULOUS MAY Part I

A few weeks ago I felt really stressed as I tried to figure out all the logistics of Nami's out-of-state brain surgery. I had been working for months to put everything together for this surgery and was feeling extremely nervous about the cost. I had researched many organizations and was doing all I could to get the surgery without having to lose our house. Of course we'd lose it if we needed to, but I was going to try every last charity, government organization, etc. in order to help our son. Although it was against everything that felt comfortable for me, in addition to all the other resources I was looking into I decided to ask for help from my coworkers. I sent the following email:

Dear Colleagues,

I’m a keep-to-myself kind of girl, but these past few years have pushed me to do things I never thought I’d do; one of those being to open up and ask for help. So, although this is a difficult thing for me to do, I am asking for your help.

For those of you who don’t know, my 4 year old son was born with a condition called tuberous sclerosis. This causes tumors to grow on his vital body organs. He has hundreds of brain tumors, heart tumors, kidney tumors and cysts and eye tumors. He is autistic and has uncontrollable epilepsy. Our biggest concern of the moment is his seizures. He has been to the emergency room multiple times and life-flighted twice when he stopped breathing and had to be intubated. During this school year he’s had over 100 seizures on most days. Somedays he has upwards of 300 despite being on up to 5 anti-epileptic medicines. We have completed extensive testing in Utah for brain surgery to help, but his case is so complex that even the best doctors here don’t feel comfortable with doing it. We have found one of the top epileptologists and top brain surgeons for his condition who will be operating on him in NY. We will have to live there for at least one month to get this done.

Obviously the cost of all of this will be a lot. Our insurance will cover some of the expenses, but we be left with a lot of expenses still. I tried to think of something easy for people, so here it is: I know there are a lot of soda drinkers out there (me being one), and I was wondering if you could smash your used cans and drop them off in my room. I welcome them from your homes, your friends’ homes, etc. I will then recycle them and use the money to help pay for my son’s expenses. I appreciate all your support.

I sent this email with the hope of being able to raise enough money to buy a plane ticket for my husband by collecting cans for the remaining month of school. I never could have predicted what happened next...

Initially I started receiving anonymous donations. I was extremely uncomfortable, although very grateful, for the generosity of these people. Our principal asked for permission to talk to the student council and I received a couple of emails from teachers asking for permission to try a do some fundraising for Nami. At some point the newspaper adviser took the information to her newspaper staff who got busy and things seemed to explode. There is no way to name all the people that helped because there were so many, but here is some of what resulted:
  • It all started with a kickoff at lunch with a lot of fun entertainment, the halls were filled with posters and flyers for the many events to come.
 
  • Teachers and students then formed rivalries and competed in Penny Wars which resulted in many students donating hard-earned and saved money, bringing money from home, teachers donating and teachers committing to all sorts of punishments if their classes lost. The smack-talk between the front office and counseling office livened up the last weeks of school.

  • Clubs and groups put on a "Carnival for a Cause"
  • Many organizations added a tribute to Nami as part of their final performances including a Miracle Minute by the Dance Team, a Dancing with the Teachers Competition by the Ballroom Team, A Benefit Choir Concert and a Jazz Improvisation performance by the Jazz Band.
 
  • There was an all-night volleyball tournament,
  • a movie night at a local movie theater where at least 2 movies were sold out,
 
  • and a month-long fund-raiser at a local frozen yogurt place.
  • Faculty and community members did lunch-time story-telling, made and sold sugar cookies to the faculty, donated baskets, beautiful hand-made quilts, and a personal training session to be auctioned off. 
  • This year, the annual Pigstock concert at the school was done in Nami's name.
 
  • A co-worker is selling his adorable e-book as part of the fundraising. (Book on Amazon)


  • Word spread to many through texts and so many from the community joined in with donations: from local businesses to countless individuals, from those who have no money to give to a 4-year-old girl who gave Nami her shiniest penny. I cannot express my gratitude to the person who anonymously donated an extremely generous $5000 match.
  • And, of course, the CANS! There were loads and loads of cans that the principal ended up driving daily to be recycled. People were coming from all over to bring them in. Students even spent time gathering cans from garbage cans in parks…WOW!
I still can't believe this all happened.Things like this don't happen in MY life. It truly is miraculous!

Friday, May 24, 2013

IT'S OFFICIAL


(Note: this post contains pictures and videos of medical issues that some may not want to view.)

After seizures beginning at age 4 months old…

After life-threatening infantile spasms began at 4 ½ months old…


After multiple visits to the emergency room…

…and 2 life-flights due to 2-3 hour seizures, no breathing and intubation…


After multiple days where seizures are constant… 

After seizures causing constant falling all over the house, including down the stairs and in the tub… 

After seizures causing imbalance and injuries from running into things… 

After seizures causing countless nights of interrupted sleep… 

After extreme exhaustion from little to no sleep… 

After days of walking around aimlessly…

After sometimes over 300 seizures a day despite being on up to 5 anti-epileptic medications at once… 

After multiple efforts with various anti-epileptic drugs...

After having to use rescue meds time after time after time...

After countless eegs (both inpatient and outpatient), sedated MRIs, doctor visits, and meetings…
 
After having surgery scheduled and then canceled because his case is too complex for the doctors where we live…

After days and nights of worry, anxiety, and frustration by Salesi and me… 

After countless times crying and crying until I couldn’t any longer… 

After questioning God’s plan… 

…Nami’s brain surgery is finally officially scheduled! 

I am extremely scared and elated. I have cried and cried and I’m not sure if it's the relief or fear that is causing it more...probably equally both. I’m excited for the possibility of less seizures, better learning, and an overall better lifestyle for Nami.

It has not been easy coming to terms with the idea of brain surgery. The prep for it required multiple sedated tests and tests requiring hospital stays. The planning has been intense…over a very long time. My son will have to endure extreme pain. There is a possibility it won’t work. There is a possibility it may only work for a short time because he has so many tubers that could become new “hot spots”. There may be complications. There are no guarantees. 

Deciding that surgery was the best option for our son was not an easy process. Every time I made my mind up to try the surgery route, I then tried to talk myself out of surgery. I convinced myself that we were taking too drastic of a move. Each time I thought against surgery, Nami stopped breathing and had a seizure within seconds. One time he fell down an entire flight of stairs because of a seizure right after I was questioning whether or not to go ahead with the surgery. At one point I prayed to God, apologizing for questioning His inspiration to get the surgery and vowed not to question it again. Oh how weak I am: a couple weeks later, my son had about 3 days in a row where all he had were absence seizures. He had started to say a couple new words and seemed happy. The thought crossed my mind, "Maybe we DON’T need to put him through all this pain with the surgery since he’s doing so well". A few hours later I was bathing him. He stopped breathing and he fell face down in the tub as he seized. OKAY! Note taken! He WILL be getting the surgery!

I’d like to say I never questioned the surgery after the tub incident, but that is not the case. I have continued to question it. I continue to question it to this day, but I realize that my questioning is out of fear of what we are about to endure. Nami will have to have two sides of his skull removed. We will have to fly across the country for this surgery. Our family will have to be split apart for a lengthy amount of time. The emotional and physical toll it will take on our little family as well as my entire family is tremendous. Yet I feel assured that it is the best option for Nami at this time. Thank you all for your continued thoughts and prayers for our family. Please come back for the next post which will be a happy one...thanks to PGHS and the community!

(I will post updates on Nami's progress at Nami's Page: After It Soaks In )

Thursday, May 9, 2013

A FEW WHITE SPOTS

I have wanted to be a mother as long as I can remember. You can imagine the heartache my husband and I experienced when we didn’t have our first child for almost 9 ½ years. I felt so much joy when our son finally arrived, but I also felt a twinge of fear. I couldn’t explain it. I just didn’t feel that everything was all right. After Nami’s birth I was told both apgar scores were 9, and I tried to have that great news reassure me that we had a healthy boy. It didn’t. I just couldn’t shake the feeling inside me that something was wrong. I tried to convince myself that it was just because I wasn’t used to receiving good news, considering many challenges I’d had up to that point in my life. I tried to tell myself that I was being a pessimistic person and that I should enjoy my dream to be a mother finally coming true.

A couple of significant things happened in the hospital after Nami was born that didn’t seem quite so significant at the time. First, he basically came out arching his back. My mom questioned my dad (Nami’s pediatrician) about it. I could see my dad trying to keep an open mind and discussing many possibilities of why this was. One was that sometimes babies with neurological issues do that. Second, a CNA noticed a weird heart beat and notified the other staff. An EKG was ordered and the results came back as normal. We left the hospital being told we had a healthy baby boy. 

I kind of succeeded in being able to relax for the first three weeks of Nami’s life, enjoying lots of cuddle time. When Nami was three weeks old, I took him to my parents’ for my sister to take some pictures of him. Near the end of the photo shoot, I noticed two white spots on the back of Nami’s leg. I am embarrassed of my reaction now, but at the time I started freaking out. I started to cry and ask, “How could my beautiful child have to have such ugly spots on his leg? Are they birthmarks? Is it vitiligo? This is so unfair!”  

I remember badgering my dad with questions about the marks. He remained calm like he always does when I’m frantic about something. I told him that I had had a dream about my son having vitiligo and I just knew that’s what it was. He told me not to get ahead of myself, but that he would call the dermatologist and see what he thought. I left that night feeling angry that my son’s physical appearance wasn’t perfect. I thought, “How could this happen to us after we endured so much before he arrived?” 

Over the next couple of days I noticed more white spots appearing. (I now know that Nami was born with the white spots, but as his jaundice went down and the pigment of his skin appeared, the white spots started to appear.) We finally heard from the dermatologist who suggested using a cream to see if it was eczema and we could clear it up. I was a bit suspicious that my dad wasn’t telling me everything so I pressed him about what else these spots could mean. He said that sometimes spots like this could be ashleaf spots and are a sign of a very rare neurological disorder, but that he didn’t want me to have to worry about that until we ruled out eczema. I let the issue go, but I felt that my dad was trying to protect me from something he knew was a possibility...something that was really bad. 

For the next couple weeks I put the cream on Nami religiously. I checked his spots multiple times a day and even convinced myself at one point that they were getting better. Then I checked the next day and they were still there, as clear as ever. We made an appointment to see the dermatologist. I continued to feel like my dad knew more details than he was telling me. I feel now that he was hoping that he was wrong in thinking that it was TSC and he wanted to get the dermatologist's opinion before verifying the horrible news. 


While at the appointment, I could quickly see that we were not going to receive good news. The dermatologist tried to mask his sadness for us as he confirmed that the white spots were ashleaf spots and that he felt our son likely had Tuberous Sclerosis Complex (TSC). He printed off a couple of pages from one of his medical books to read over. I felt my body instantly go numb. I couldn’t believe this was really happening. That night I cried and cried and cried. I hugged Nami tight as my tears drenched his head. The dermatologist and my dad tried to keep reassuring me that there was so much variation within this disease and not to think of the worst. But, there that feeling was again. I knew something was horribly wrong. I felt my child would have it all.

It’s amazing to me how little I knew about TSC at the time considering the knowledge I've gained with my new obsession over the last four years. I recorded my thoughts in an email to my family the next day:

“So, what do I know?  This is most likely a genetic mutation that can cause many problems. The problems range from neurological problems such as Parkinson’s and seizures to a 50% chance of mental retardation. ADHD, autism and tumors on various organs such as the brain, heart and kidneys are all possibilities. Major skin problems, eye problems and teeth problems are also possibilities. It’s difficult for us to know what Nami will have to endure until he gets some testing and experiences things as he grows. Dad is a lot more familiar with correct side-effects than I am. My mind is not too sharp right now, so I don’t want to say something wrong. I know the biggest thing we need to do is some genetic testing. It seems that dad also told us of about 5 specialists we’d need to see right away. We’ll need to get an EKG and brain wave test, an MRI and eye testing as well as some other tests that I can’t remember. He will have to get an MRI and eye test yearly. Whew…this is overwhelming!
 
This summer will be very different than what I expected and it’s only the beginning. I kinda feel like I deserved more of a break than I received with struggles, but I guess that’s selfish. Salesi and I have been through so much and grown through it all. During our most difficult times I felt that we were being prepared for something else. Those thoughts SCARED me but I guess I was right. It seemed quite a pessimistic view on life, but I’ve learned to be very tentative with good news. I’ve learned to try not to get so excited because it seems like disappointment is always around the corner. Throughout Nami’s birth, I took all good news in stride but had a dull gnawing sense that I didn’t know everything. My thinking throughout his short life and in the past has been that our child would be autistic. I am wishing that was it. I am wishing that what was first a disappointing discovery of what I thought were birthmarks were just that. My perspective on life has changed in an instant. Now I can see that ALL the difficulties I’ve experienced in my life have prepared me to be ready to take care of this special child. I am not shocked at this news although I can’t express the heartbreak I feel. I think I was prepared to receive this news so that I would be able to stay sane and make the choices I need to that are in Nami’s best interest.”

  
So far it has been a really tough road for us. Nami didn’t get the easier road with TSC (I say that knowing that “easy” and “TSC” do NOT belong in the same sentence). We have been told he has hundreds of brain tumors (no one is able to count exactly how many because there are too many), both cortical tubers and numerous SENs. He has eye tumors, dozens of heart tumors (including one on his mitral valve which makes his blood kind of backwash), kidney tumors and cysts, and he already has 3 skin manifestations of the disease. He started having infantile spasms when he was 4 months old and has endured seizures most days of his life. He is currently having anywhere between 100-300 seizures daily despite being on 4 anti-epileptic medicines. We have made numerous trips to the ER due to seizures we cannot stop. Most of the time he is admitted. Our son has stopped breathing twice and had to be intubated and life-flighted both times. Nami is autistic. He can only say a few words and most of the time he only says them with prompting. He has major behavioral issues and at times he lashes out and can be destructive. He does not have good sleeping patterns. I feel like Nami would be much worse off were it not for my dad, though, the best pediatrician in the world (no I am not biased =). 

I think back on the day I first saw Nami’s white spots. Oh how I wish now that the marks had just been birthmarks. It’s amazing how perspectives change so quickly. In a few short weeks I went from being extremely vain to wishing for all my son to have is some simple marks on his skin. Despite all of Nami's challenges, I would not change him for anything. He is the light of our lives. He endures so much yet he smiles and laughs a lot. He loves his little brother. He sees the world in a unique way and teaches us to take time to see things his way too. He brings light to everyone who comes in contact with him. He hugs people. He makes us want to be better people. Every accomplishment he makes is a HUGE celebration. He is a FIGHTER! We are so blessed to have him as our son.
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