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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“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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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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Mommy needs quiet time

Definition of QUIET TIME: It’s the time when Mommy’s blood is turned down to simmer.

I am a mother of a 4-year-old and a 2-year-old special needs child. I also suffer from CD, so quiet time, for me, is a must. Every home/family is different, but reading this will show you how important it is for you and your child to have quiet time, and how you can accomplish it. Use that time to do whatever your heart desires. Get some rest, watch some TV, or read. Whatever, but this is YOUR time. HAPPY QUIET TIME!

First of all, just because you are feeling in desperate need of quiet time, does not mean you are a bad parent. You need to let go of the guilt and realize that having a break is necessary because you can regain your patience. Have you noticed, some days with your kids just make you so impatient that you just automatically start answering “NO!” to everything? It time for a break… Children also need quiet time for them to relax and wind down a bit.

What is my strategy?

CONSISTENCY & ROUTINE…It is best to start training your kiddos as early as possible. I knew from early on, with my first child, that I had to establish a break for myself daily. Stick with your quiet time plan!

Most children refuse to take naps, but I make it inviting. I say something like “Lacie, you don’t need to take a nap, but you have to play quietly. Maybe do some puzzles or color?” Because my child is so used to this being a daily thing, she knows what quiet time means. I bring her into her room with a Sippy cup of water. I tell her to please play quietly so Mommy can rest. She knows the only reason she comes out of her room is to go potty or if something is wrong. Usually I will take this opportunity to take a cat nap. If she does end up needing the bathroom, she will stand at her door and yell “Mom can I go potty?” “NO!” Just kidding LOL.

Because my delayed son is so well-behaved, I can put him in his play pin for an hour with a few toys and he will be so happy!

I know Lacie is safe in her bedroom because it is childproofed. Plugs covered, windows locked etc…I know she is safe. Of course you wouldn’t want to do something stupid like stick ear plugs in to sleep, you need to be able to hear if anything happens while you are napping or relaxing. I am a very light sleeper but I also have a baby monitor hooked up to hear if she opens her door.

I hope you find this strategy helpful, please comment below if you have found other ways helpful! Thanks for reading! Please follow & share… 

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Hospital Freebies!

WARNING: I will come off as a cheap skate in this article!

Since my son was born, we have been in the hospital too many times to count. Everyone of those times we came home with double the luggage. Conner (our son) has had issue after issue. Seizures, heart block, feeding tube surgery, pace maker surgery…lots of things, pretty minor. Usually the nurses ( the nice ones, lol) will send you home with plenty of supplies. I NEVER turn down freebies. I’m sorry but my child already is expensive, I would appreciate saving money where ever I can 🙂 Here is a list of freebies I have received from my sons hospital stays, and my uses for them. Enjoy!

– Gloves ( I use these to clean up puke, daily… yeah I hate life some days)
– Syringes ( I use daily for dispensing medicine )
– Extra feeding bags ( G-tube fed, you can never have enough! )
– Thermometer ( Always smart to have extras )
– Diapers and wipes ( No brainer… )
– Donated blanket or stuffed animal ( Cute )
– Comb ( To tease my own hair, LOL! )
– Lotion ( Just because )
– Aqua-for ( Conners lips are always chapped)
– Face masks ( Germ protection)
– Medical tape ( You never know)
– Gauze pads ( G tube site)
– Adhesive remover pads and spray
( Because corners biggest fear is bandages)
– Baby soap and lotion ( Just because)

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7 benefits you didn’t know about having Pets

You have heard the term “ An apple a day will keep the doctor away…” Is it true a pet a day will keep the doctor away?

I have ALWAYS been a huge animal lover. After my traumatic pregnancy with our son, that is when I really found that out about myself. I have a Dog named Jack, he is a black lab pit mix. Then we have our little kitty Wendy. There are so many benefits to having animals and most of those benefits people aren’t aware of. Take a look!

Immunity: Children who live with Dogs or Kitty’s from infancy or less likely to develop animal allergies later in life or asthma. Though it is not certain but researchers suspect that early exposure to pet allergens can actually help the immune system. It could help your child build up an immunity. How awesome is that! Better start that back yard Zoo you always dreamed of!

Therapy: What is pet therapy? The use of trained animals and handlers to achieve specific physical, social, cognitive, and emotional goals with patients; also called animal-assisted therapy or AAT. Pet therapy has been known to lessen depression, anxiety and fatigue. My son Conner and our dog Jack are best pals. When Conner began having a seizure one day we laid him next to Jack. The fur and emotion for Jack helped Conner come out of his seizure quicker. I have seen firsthand what the power of animal connection can do.

Blood Pressure: Did you know that just by petting your cat or dog, you can lower your blood pressure Cholesterol? Researchers looked at nearly 4,500 adults and found that cat ownership was related to a 40 percent lower risk of suffering a fatal heart attack.

Love Connection: Forget dating sites just take your dog for a walk! Dogs are great conversation starters. This can really help ease people out of social isolation or shyness, The conversation can stay grounded at the dog or it can turn into “I do” who knows…lol. Hasn’t anyone seen 101 Dalmatians???

Weight watcher: A research was done with 2,000 adults. The adults who owned a dog were much less likely to become obese because they felt more motivated to walk their dog. We all could you a little motivation right?

Mental Security: Just knowing that you have a dog that barks is enough to help you fall into a good deep sleep. I have found myself scared and nervous when my dog isn’t with me at night for one reason or another.

Service: For the disabled, or mentally challenged, having an animal to help guide them or service them in some way is just amazing. Dogs can be trained to sense seizures, sense an autistic melt down, help an elderly person who has fallen or is lost. There are so many things animals are capable of doing. It is just incredible.

Such a large majority or animals are killed everyday because of animal shelters being over crowded. How sad it is to think about what great benefits these animals can bring, and they are being killed because nobody wants them. I am a huge advocate for rescue animals!

I think its time you head down to your local animal shelter and adopt, dont you?

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What’s in my Special bag?

What’s in my Special bag?

Stethoscope ( Conner has heart block and arrhythmia )
Pulse ox ( not accurate enough but check oxygen level )
1 feeding bag ( Conner is G-tube fed )
1 formula box
Thermometer
Emergency meds ( For prolonged seizure )
Extra syringe
Wipes and diapers
Feeding Extender
Eye drops ( Conner get dry eye often )
Glasses
Head phone to block sound ( Sensory over stimulation )
Emergency tube ( Incase Mic-key button comes out )
Diaper sacks ( I am sure everyone loves the smell of their poo )
Otoscope ( I use this all the time because Conner gets ear infections )
2×2 IV sponges for Mickey button ( To soak up tummy boogies, yuck )
Orajel ( For teething, I love when my kids cry non stop, don’t you? )
Drainage protector and catheter plug ( If Mic-key comes out it clogs emergency tube so stomach contents don’t leak out )

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How to set up your kangaroo Joey junior feeding pump

Hey there care givers! I just happened to come across one of my old videos and I received over 12,000 views! Unfortunately I do not remember how to log in to that account, but I am going to post the link below and I hope you all find it helpful! Please comment if you have any questions or would like to add something I left out. http://youtu.be/qFsoYoSyNv8

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Conner’s Journey part 2

“Karissa…….Karissa….Wake up….” I slowly opened my blurry eyes. Focusing on the blonde woman in my face, I tried to make sense of where I was. “ Your son is doing well. He didn’t need any help. “ Then she disappeared. I felt like she was lying to me or I was dreaming. In walks my husband with our camera. I see for myself, a video of my son lying on a table, kicking his legs out and crying. He looked like a healthy normal baby. How could this be? Was it possible he didn’t need any help? I cried but still felt numb.

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I was in complete shock. I made myself a video blog when my medication wore off a little. I spoke about how I was feeling and how Conner survived! I just kept thinking how much I wanted to hold my son. Because Conner was in the NICU and I was recovering from my emergency c section, which by far is more painful than a regular c section, we had to be apart. I was loaded with medication for the severe pain so everything is pretty foggy.

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The next day my husband called my moms phone as she sat beside my bed. She let me know that I had a surprise coming. I had a feeling I knew what it was. I put on makeup incase there would be pictures. My husband walked around the curtain of my bed holding…what I thought was impossible…my son. The one who continued to kick every now and then reminding me “ Hi mommy, I’m still hanging on!”. He was so tiny, I had never been so scared to break something as I was then. I held him gently in my arms. Still numb to it all, I cried. I rocked him side to side regardless of the pain. He looked just like his big sister.

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The nurses had made exceptions for Conner to leave the NICU since he was a miracle baby! That was the best surprise ever…I didn’t want them to take him away. He could only stay for a little bit. It had been sixteen hours since he was born. I hadn’t soaked him in enough…I needed more of my Conner. His sister Lacie got to meet him while he was in my arms. She didn’t know what to think. We didn’t prepare her for having a baby brother. We didn’t talk about him in front of her. I could tell she was a little put off.

We were asking to meet with the doctors in the NICU to discuss Conners MRI and genetic testing. They explained to us that Conner had numerous tumor’s through out his brain. They told us he had Tuberous Sclerosis Complex type 2. It didn’t come from either of us. He developed it totally on his own. Apparently it was just a freak thing. The doctor also mentioned that Conner would likely would have learning disabilities and seizures later in life.

As I held him in my arms, I starred down at his little head and couldn’t wrap my head around the fact that there were these awful little tumors inside of his brain! But for now, he was perfect in every way, and I decided I was going to enjoy every moment without the fear of his future.

Only four days later, we were ready to go home. I never imagined this moment would come. Hence, why I was totally unprepared. I didn’t bring a car seat, or anything. The hospital donated one to us! We were so grateful. Boy, did I have some shopping to do! We strapped Conners little body into that huge car seat. Joel was so scared to drive with Conner in the car. It was actually really cute.

Walking into our home with our son was surreal. I wanted to stay up forever and enjoy it all, but I was so tired, so we went straight to bed and Conner slept with me. The next day my mom brought a bassinet, clothes, diapers, and everything else we needed. I had a few things hidden away like a breast pump, a few outfits, and a bouncer. I placed the crib and swing out in the garage before his birth. I didn’t want to see anything that would make me sad when we came home without Conner.

I was so in love with my son, I felt on the clouds for weeks! Our friends from our Kingdom Hall came every night to drop off dinner, and friends would come clean my house and get groceries for us. We felt so loved and taken care of. My mom put together a last minute baby shower, which didn’t at all seem like a last minute thing. It was beautiful! We had about 80 people come. It was overwhelming how many came. We received everything we needed of course. Conner was 1 month old at the time. People came up to him and cried while he wrapped his little hand around their fingers. It was a very special day.

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One month later EVERYTHING changed. Joel and Lacie went to meeting ( or as you would call it, a church service) Click here to find out what “Meeting” is http://www.jw.org/en/video-kingdom-hall/ I was home by myself with Conner. We were laying on my bed and all of a sudden a face changed and looked scared. His arms went up and his eyes began to roll. His whole body shivered. It lasted 15 seconds. I sat there crying trying to call Joel, he didn’t answer so my mom rushed over.

I knew he would have seizures but not so young! From that point on he had grand mal seizures every hour and the longest lasted almost 3 minutes. I was terrified. The doctor started him on a seizure medication called Keppra. It helped but it took a few weeks to figure out how much he would need to control them. Finally he only had 5 a day which was reasonable considering how many he was having before.

Conner began having infantile spasms at 7 months old. I was extremely depressed because Conner had forgotten how to laugh, smile, and babble. He even forgot how to eat. He would have over 200 individual infantile spasms a day and if he wasn’t seizing he was sleeping. He was never awake to eat, and he eventually became so weak to eat and forgot how, that he had to have G-tube surgery so he could eat. Infantile spasms have been his hardest challenge. Here is the link to his news video of that time. http://m.krcrtv.com/With-a-Total-of-19-Tumors-Everyday-is-a-Battle-for-Baby-Connor/18147000

From age 0-5 is when children develop the most. Conner has had so many seizures that obviously effected his milestones. He gained back smiling, and laughing after trying a bunch of different medications. Only some of them showed a slight improvement. He went 3 months without any seizures and he began to babble again! The seizure break happened completely on his own.

I thought this is it, he’s better! Then while shopping in Target one day, he was laying in the cart and had a cluster of 20 spasms. I called my mom and cried on the phone. Since then I knew things would never be stable. He would have small breaks and then begin having them again and again.

Conner is globally delayed. He is 2 ½ now and crawls a little, babbles, and laughs. He still has close to 100 spasms a day. Conner gets medicine 3 times a day. He recently had a pace maker put in because he developed 3rd degree heart block. He has healed up good, and it’s amazing to hear his heart so regular. He continued to have ECHO’s and halter monitors done after birth. He always had a crazy arrhythmia.

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Our life has been so different since Conner came into our lives. I have flown with Conner too many times to count. The town we live in offers nothing to Conner. Anytime he is having problems he is airlifted to the city. Conner has made us a closer family. Of course we come across hard ships, but we always make it through. California offers so many great things to kids who have disabilities. Conner sees 5 different therapists! It really had made a huge difference.

I love my son exactly the way he is. I wish he didn’t have to suffer the way he does, but he is the bravest kid I have ever known. I know he will be my baby for life, but I’m okay with that! I’m glad I get to have my baby forever rather than not at all. He has humbled all of us including his sister. Lacie loves to take care of her brother. Of course, we have a hard time juggling attention between the two but we make it work. She is good at communicating and letting us know she needs us.

If you others are going through this or think you might be, I know this sounds cliché’, but you really are not alone. You have a huge group of parents to help you through. Including myself, please contact me if you have questions or need help. I will do my best… Things won’t be this way forever.

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