Update on Conner: 9/9/15

as some of you know Conner was airlifted to his main hospital four hours from home. On August 11th. His pediatrician found a collection of fluid behind his pace maker (that he had placed back in December 2014). His skin around the incision site had healed but then began looking infected with a red swollen look around it. We were concerned already from the skin irritation but even more so when fluid was found. So he immediately was flown away.

After ultrasounds, X-rays and blood tests, the doctors decided to start Conner on a big treatment plan of a couple of different antibiotics via IV. He later received a PICC line because of so much use of the IV. The plan was to keep him on IV antibiotics for a 6 week course and no chance of going home. The infectious disease team have a very difficult time knowing for sure if that fluid collection is an infection, sadly there isn’t a real way to tell besides the fact that his skin was very red and irritated. Also his CRP levels were high (checks the inflammation in the body, very non specific). 

To add to everything, Conners seizures were completely out of control! He was seizing every 10-15 minutes and given his versed (seizure rescue med via nasal spray) multiple times a day. We decided since he is already in the hospital why not try the keto diet (special seizure diet, LOOK IT UP). It has worked wonders already. After weaning him on to it (over a 3 day course) we already saw improvement. He was 9 days completely seizure free. 

After a few weeks of antibiotics his irritated skin cleared up but left a scar. The repeated ultrasound showed less fluid collection. It went from 3.5mm at beginning of admission to 1mm after 3 1/2 weeks. But weirdly, after everything began looking better, Conners CRP levels (inflammation blood test) came back higher and higher and higher. 

We feel as if we are on an episode of “House”. None of this makes sense. Everything is looking better, but he is obviously inflamed somewhere inside his body. The nurses and doctors always remind me “Conner is more complicated than most kids”. Isn’t that the truth. Tuberous Sclerosis stinks! 

Conner has been on the Keto Diet now for about 2 weeks and it’s going great. He has had a few break through seizures (very small partial seizures). I’m just so grateful for this diet. Conner feels great and he can finally be himself!

Conner is admitted to one of the best hospitals on the west coast. Somehow though we still can’t figure out what is wrong. We are on day 27 of 42 for his antibiotics course but now that this inflammation thing has become a problem, Infectious Disease team won’t want to send him home with his CRP level so high. Looks like we are staying here forever… 

 

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Delivery food to the hospital?

“My carrots taste like plastic…” Yes, those words have flowed from my mouth. Yuck. There is nothing worse than being stuck in a hospital and even worse when its your child’s admission. Completely speaking from experience (I am in the hospital with my son as I am typing this). You have to take care of yourself in order to take care of others. It’s hard to feel at home in a hospital but there are ways to make you feel more comfortable. I don’t know about you but good food that warms my belly, warms my heart.

I recently discovered an app called EAT24. Available via App Store. This app is amazing! If you don’t believe me go download it right now, and see for yourself. It’s free, and you can type in what you are craving. The customer service is amazing. If my food hasn’t arrived or I have a question, you can quickly ask via chat window and a very friendly person will help you.

I actually pay around the same amount I would if I were buying food in the hospital cafeteria, for food that is gross and repetitive.

Here are the steps ( to make it easier for you, because I care lol)

1. Download EAT24 from App Store

2. Make sure your privacy setting let the app find your location ( or manually type it in)

3. Select which restaurant you want to order from, then select delivery

4. Once you click check out, a window will pop up showing what you are about to order. At the top there is a box you can type in. This is what my message says “Once in lobby, please call 555-555-5555 and I will come down to you.” Usually delivery guys can’t come straight to the room. So it’s best to give them those instruction, just make sure your cell phone volume is up…(I learned the hard way lol)

5. You can choose your method of pay. Debit/Credit, PayPal, or cash.

6. Once you submit your order, you can click “check order status” and it will show a timer so you know how soon your food should be coming.

7. If for some reason things are taking longer than they should, click the button under the timer that says “ message EAT 24” and someone can check on it for you.

Hope I have helped your stay at your “Home away from home” just a tad more comfortable! Enjoy…

  

Don’t give up on your dreams!

I’m nervous! This is real honest truth time. A lot of my close friends and family know this about me. I have tried so many things in my life whether it be to make money or just something to do as a hobby. Here is a list of things I have tried…

– Photography
– Poetry
– Writing/Blogging (I love!)
– Wedding planning (I also love!)
– Scrapbooking
– House keeping
– Day care provider
– Avon
– YouTube blogger ( fun but not for me )
– Foster pets (this makes me so happy)

My husband has been so supportive through all these transitions, so that I am very grateful for. I guess I get bored easily. I tend to get so excited to try something new. Some how being a special needs mom always sets up a bit of a stumbling block to continue.

It goes like this…I get so excited about a certain hobby (that I love but won’t say what it is until later). This excitement comes and goes in waves often. The reason I get discouraged is because I feel like it’s impossible to do what I love and be a special needs mom, when the reality is… I’m making it hard on myself. My son is not to blame. If I want something bad enough I know I can accomplish it, I just have to maybe do it a little different than most and have plan a, b, and c.

Don’t tell yourself you “Cant” just because you are a special needs mom. Don’t give up that easy! If you want to do something you may have to put a little more time and effort into getting it done but the end result will be worth it! You don’t want to resent your child just because you made it seem to hard to do what you want. We love to use our special needs kids for excuses, but don’t use them as your crutch to get yourself out of your dreams.

So here it is… As long as I can remember I have ALWAYS a loved throwing parties, pretending to do a wedding as a child. It has always been with me. Over the past few years I have thrown showers and weddings for people I am close to and the rewarding feeling I get from seeing what I can create is just pure contentment. It is a major self confidence boost! I love taking ideas from my head and making them a reality.

I interned twice with a local wedding planner of 20 years. I learned so much and had a blast. It’s a lot of work but I loved it, and I knew that I wanted to make it a reality for myself. Maybe not full time but at least a job/hobby on the side.

Time went by and Conner ended up in the hospital a couple times. I got so scared thinking ” gosh, what if today was someone’s wedding day, and they were relying on me” that totally freaked me out! So I gave up… Every couples months I would have withdrawals, and say to my husband ” ugh, I’m craving a wedding so bad!”

Recently a family member became engaged. I offered to plan their wedding as a gift from my husband and I. It has been so fun, and has reminded me of how much I love doing this! I guess I didn’t have enough fire power to keep going before, and maybe again I’m just overexcited, but I really feel today that I CAN do this! I can make this work some how.

Bottom line is….DONT GIVE UP, fight for what you want. When Mommy and Daddy are happy so is everyone else. If what you want to do allows it, let your children be apart of it! My daughter loves to help even though she’s only four years old. I ask her opinions of which colors look better, or I have her color me pictures of how the ceremony should look. It keeps her busy, and she loves it.

Please tell me your story, I would love to hear it!

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“How to be a HAPPY special needs parent”

Working as a team.

  1. My husband and I came up with a genius sleep schedule, and may not work for everybody, but to keep everyone happy (including Mommy) sleep is important. Since I am a stay at home mom I get up during the week days at night whenever Conner is having seizures, or whatever the issue is. On the weekends my husband takes over Friday and Saturday night. I use ear plugs to have a quiet peaceful sleep and even though it’s only two nights, it does make a huge difference!
  2. Stop keeping count of who last did what. My husband and I have done this a lot in the past. “Babe, can you please give Conner his medicine?” “But I fed him all night I thought you would do it.” “But I have to take a shower and get ready to take him to the doctor” STOP IT! All that matters is, is you are each equally contributing to your child’s needs. This will save a lot of arguments! 😉 If you know something needs to be done, why not buck up and just get it done if you can.
  3. Having disagreements when it comes to your child is only natural, but its best to express your opinion lovingly. When Joel and I were new special needs parents, Joel thought I was over reacting every time Conner did something weird. I sat him down and told him WHY I did this. I explained to him that the constant worry I was experiencing was taking its toll, and the only way I could cope was to make sure I did my very best at being in tune with Conner and if I was over reacting, I felt that it was better to be safe than sorry. After a while Joel saw that sometimes if I hadn’t been worried about it, things could have taking a turn for the worst. I don’t mean the wife is always right, sometimes the father can be right too lol, there have been lots of times when Joel had to explain how he felt about a situation. Give each other a chance to speak up, but never belittle each other in front of family, friends, or medical staff. Stay on the same page as much as possible. Come up with a plan for each situation that may arise. It will help things go smoother. That I promise!

Say no! Those of you that know me…you are going to think “Huh, she should listen to her own advice!” This is so true, but I have learned that when I say “No” to extra things I know I am doing myself a favor. I love helping people out because it helps me get my mind off of my own stress, and I know people appreciate the help! There are times though I say “Yes” too often and I end up becoming overwhelmed. So on top of taking care of my special needs son, my 4 year old daughter, being a wife, and a busy Christian (Jehovah’s Witness), I choose to put too much on myself and I just crumble under the pressure. DON’T DO THIS TO YOURSELF. Know your limits. Your friends and family will understand…

Beautiful inside and out. To begin with, being a special needs parent automatically makes you beautiful inside. What about outside? I’m not talking perfection here… BUT! Have you noticed when you put extra effort towards your hair and makeup it actually benefits you more than others? (Of course, I am doing everyone a favor by putting my face on, otherwise I would be ran out of town with pitchforks lol) I have noticed whenever I take a few extra minutes on my makeup, I feel at least 2x better than if I don’t. There is nothing wrong with sweats, messy buns, and naked faces! I am all for that! Try dedicating more time tomorrow for getting ready and see how you feel.

Romance. Why is romance important? Well that should be obvious! See my other blog…http://onerummymother.com/2015/01/13/never-neglect-date-nights-again/

Quiet time. Of course you all know I am a HUGE Quiet time advocate! See my other blog….http://onerummymother.com/2015/01/21/mommy-needs-quiet-time/

Ask for help. Don’t ever be ashamed to ask for help. We all need help time to time. I couldn’t be a special needs mom without the help of my family, friends, and support groups. Knowing you have people there to help you will put your mind at ease. If you keep trying to take on the world alone, you will fall apart, but with support, your peeps will keep you strong when you most need it. Even when you don’t need them, just knowing they are there for you can be really comforting.

Night out with friends. I try to make this a monthly priority. For you special needs moms and dads, you have got to take time away from home to be with your friends, and try your best not talk about your kids. Though it may be hard because they consume every second of the day usually and love them so much, but having some normal conversations is healthy and it’s okay, don’t feel bad. Remember, if you aren’t happy then your kids won’t be happy. Make time for you and your friends to just hang out.

Online support group. Since my son was first hospitalized I connected with other parents online via Facebook, Inspire, etc… The support was at times overwhelming! I would post about a bad day and I would instantly have over 20 comments posted. All to encourage and to keep us going. At times, I know you agree, you don’t even answer your family’s phone calls. Somehow getting online is my favorite way of receiving support. Not that my family doesn’t give great support because they do, but accessing the internet and talking with other parents saves my voice from cracking and emotional break downs over the phone, which I avoid at all costs. LOL

Dedicated family time. Family time, I know, can seem rare because of all the stress from therapy, doctor appointments, just everyday life with a special needs child but just take a moment to clear your mind and ask yourself these questions “How can I be happy?” This is one of my favorite quotes “Happiness is letting go of what you think your life is supposed to be like and celebrating it for everything that it is”- Mandy hale. We get so caught up with our busy lives that we forget what life is all about. My favorite thing to do is just sit and watch my kids play on the floor. I always think to myself how much time flies. I have to gobble up all of this cuteness and enjoy time with my family. We shut the TV off, and our phones and just relax, and listen to your kids play. That is how I celebrate the life I have. I listen… Also see http://onerummymother.com/2015/01/20/how-to-find-happiness-after-life-hands-your-family-lemons/

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What is a Mic-key button?!

In this video I explain what it is, why Conner got one, NG Tube vs. G Tube, what it looks like, how it works, and my input on it. I hope you find it helpful!! I hope what ever you choose works for your kiddo! 🙂
Click the link below to be directed to my vlog

What is a Mic-key button?

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Time to Upgrade yours child’s immune system

Time to Upgrade yours child’s immune system

Sometimes our computers pick up virus’ that can slow down it’s thinking. The best way to keep this from happening is to download a good anti-virus. The same can be likened to your child and self! We can easily pick up nasty germs from grocery carts, door handles etc…Here are a few ways to upgrade your child’s “anti-virus program” Immune system.

  1. Enough Sleep.

There is an old wives tale that says “If you don’t sleep well, you will get sick” This statement is actually true! Our immune system is designed to protect us from colds, flu, and other ailments, but when it is not working properly, it fails to do its job. The results can be awful!

“A lot of studies show our T-cells go down if we are sleep deprived,” Balachandran says. “And inflammatory cytokines go up. … This could potentially lead to the greater risk of developing a cold or flu.” What are T-cells? It is a cell that participates in the immune response.

Not enough sleep can suppress immune system function. So try putting your kids to bed maybe a little earlier? And if you haven’t established a bed time routine, you’re crazy! LOL

  1. Essential Oils.

Thieves’ oil. Thieves is a blend of essential oils including Clove, Lemon, Cinnamon bark, Eucalyptus and Rosemary. I rub 2-3 drops undiluted on the bottoms of our feet daily. You can also diffuse it! Here is the link to go get some delivered to your door! It is called OnGuard through this website. http://www.doterra-aromatics.com/products/blends/onGuard.html

3. Probiotics.

Our bodies are filled with billions of types of bacteria that help fight off infections and maintain healthy organs. Consuming the right kind of bacteria can actually help your immune system. Probiotics are a good bacteria that can benefit you in a lot of way. What foods are filled with probiotics? Organic yogurt, Miso, Kefir, Kampuchea, Fermented Cheeses, and Fermented Vegetables are some of the foods I am aware of.

  1. Fruits & Veggies.

Here are a few great foods to eat with great immune system benefits. Kiwi, Garlic, spinach, carrots, mushrooms, sweet potatoes, and berries.

It’s obviously difficult to get our kiddos to eat just anything. My favorite way to get my little one to eat them is by only setting their veggies and fruits on the plate first. They must eat all of their veggies and fruits before they receive the rest of their meal. Obviously everyone has different likes and dislikes. I don’t believe in pushing children to like something they just don’t. I have my likes and dislikes. I wouldn’t like anyone telling me I have to eat something I hate, but there is a limit. If your child is straight up rejecting quite a few fruits and veggies just keep offering it. Don’t make a huge deal, and make them feel bad for not eating it. This can result in the opposite of the direction you would like to go.

  1. Toss those chemicals!!

Prolonged and excessive consumption of refined sugars and highly processed foods containing pesticides, chemical additives, and preservatives can weaken the immune system and make you vulnerable to developing chronic conditions.

A study published in the American Journal of Clinical Nutrition found that the ability of white blood cells to kill bacteria is significantly hampered for up to 5 hours after eating 100 gm of sugar (equivalent to three cans of sweetened soft drink).

So go walk to your kitchen and toss that crap stuff away!

  1. Get moving!

When you exercise regularly with your kiddos, there are a number of things that benefit yours and their body. Your heart gets stronger and is able to pump more blood throughout your body when you exercise. Your lungs get better equipped at handling oxygen and dishing it out to the rest of your body. Your muscles also get stronger as you use them more often. Your child’s immune system is no different.

Doctors have found that exercise can boost your immune system by providing a boost to the cells in your body that are assigned to attack bacteria. These cells appear to work more slowly in kids who don’t exercise than in those that do.

  1. Vitamin D

You may find it surprising that vitamin D is so important for your health, especially if you’re still under the impression that it’s mostly a nutrient for your bones. Most people also think that vitamin D is really a vitamin, but in reality, the active form of vitamin D is one of the most potent hormones in your body, and regulates more genes and bodily functions than any other hormone yet discovered. Vitamin D is produced as a pro-hormone in your skin after sunlight exposure, and is then converted to the potent hormone form. Without this hormone, you could die, and indeed, many do die from vitamin D deficiency-related causes.

A Japanese study showed that school children taking vitamin D3 supplements were 58 percent less likely to catch influenza A. That’s a higher effectiveness than any flu vaccine can claim, and doesn’t come with a barrage of potentially devastating side effects! And there are numerous studies like these, showing the superior effectiveness of natural strategies like vitamin D in the prevention of disease.

  1. Get those hands clean.

Keeping hands clean is one of the most important steps we can take to avoid getting sick and spreading germs to others. Many diseases and conditions are spread by not washing hands with soap and clean, running water.

  1. Play in the dirt.

Exposure to dirt and other microbes make our immune systems stronger. It’s okay to let your toddler eat dirt and kiss the dog. A new mouse study suggests early exposure to microbes is essential for normal immune development, supporting the so-called “hygiene hypothesis” which states that lack of such exposure leads to an increased risk of autoimmune diseases. The study found that early-life microbe exposure lowers the number of inflammatory immune cells in the lungs and colon, lowering susceptibility to asthma and inflammatory bowel diseases later in life.

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I hate seizures so much

Such a sad week, Conner’s seizures have become worse. He now is having 3-5, 1-2 minutes grand mals 70-100 infantile spasms a day. He desaturated during his grand mals, and is now foaming at the mouth with these ones. I haven’t needed to give him his emergency med yet but I can tell they are getting worse. It takes him quite a while to breath normal again afterwards. Please keep us in your prayers. We need as much strength as ever right now. Thanks everyone for keeping up with him through his page http://www.facebook.com/HopeforConner  He is so strong..

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