STOP IT!

I have been dealing with a lot of mean people the past 2 weeks. I am more in the public eye so I hope that can account for the increase I am noticing. Lie to me and tell me people are not mean! I feel like I live my life in a Christlike way. There was a time in my life where I was angry, self- destructive, and yes, even mean. I had what I call my "Jesus moment". It was then, in that moment I decided to STOP being angry, STOP being self- destructive, and STOP being mean. It was in that moment when I felt the closest to my Savior, me a person who didn't deserve to be in his presence, and yet he held me close. He loved me anyways! I took that moment and directed my life with it. Following His example and loving anyways. My Sweet Heart Sister, Mollie, posted this on facebook yesterday; it was a good reminder to me.

For those who offend others with their words and actions STOP IT!

I read a blog post from another Heart Sister. She had her feelings hurt by another person who didn't agree with the way she wanted to show up for a family who had their daughter go to Heaven. She took the high road. She didn't lash out, even though she had every right to. She reminded me to love. She reminded me to look for the things you have, and be grateful. Some people are just going to be negative, that's their choice. I am reminded of a new years resolution I made many years ago. I decided I was not going to be around anyone who did not edify me. Now that may sound selfish to some, and maybe like I was not being Christlike. But the people I surrounded myself with filled my cup, and I theirs. I was able to heal relationships and love more unconditionally. I need that in my life again.

I am not much of a "yeller". If I raise my voice it is because of emanate danger (or I think I am being really funny). I feel like the best communication is when you can speak in respectful tones to each other. Now with that being said, my kids are intense yellers. How does that happen? I find I am constantly telling them to speak kindly, stop being intense, look at how things may work out and be ok. Yes I realize this is part of parenting, but I notice some Adults were not taught this lesson. Why would someone think their ideas are more important than another? Why do people say or type such cutting words? What purpose does it serve? Is it necessary? To some they have not learned the lesson I am teaching my children. They are going through life misinformed. I feel sad for them.

Sometimes after a run in with a "misinformed" person, I fall into their trap of, well, barf. They feel it is their job to cause problems in my relationships. They twist my words and make themselves sound like they are taking the high road, being the better person and informing others. When is actuality they are the one in the wrong. I do not understand nor do I think I will ever try to understand, what makes a person be conniving. Do they wake up in the morning with the intent of being mean? Do they search their whole day to find that one person that they can say something mean to? Does this make them feel complete? I do not understand this behavior. I want to distance myself from those who feel that this is appropriate. So when I say I want to be around people who edify me it is not a selfish act, it is an act of self-preservation. My heart can not handle mean people. Remember the bumper sticker that said "mean people suck"? Yep that sums it up nicely.

 

 

 

 

Good Morning CROUP it must be 2 AM

Yes after 6 months of no croup, it strikes again. I heard it in Severins cry today, I knew it was coming. So far we haven't went to the ER. I am getting THAT good. When I got him out of his crib he was so purple, and his skin was moldled. That is not a look any parent should see on their kid. I gave him to Thom, tossed the pluseox and told him to check him while I got the O2 tank. I had gotten very comfy having those tanks under the crib. I don't know if I have ever set up an O2 tank that fast in my life! His Sats were 67% not cool when he has been 92% for months. He absolutely REFUSES the nasal cannula- I guess he has gotten comfy with out it too. So we wrap up in a blanket and sit on the porch. He was still retracting, nostrils flaring. I took him back inside, listened to his lungs, all clear- total upper airway inflamation. I whip out the nebulizer and mix his saline and ice cocktail. After a round of that he isn't retracting as much, and his nostrils stopped flaring. Now I have my sleep "station" set up again. Complete with nebulizer, saline, ice, O2, pulseox (both of them) and a sweet little boy. I am sure I will not be sleeping tonight. Hopefully I can get him in to the Dr. before any other germs I mean people come in. The steroid shot always helps for the 2nd night. Wish me luck!

Why yes, YES it is!

I didn't want to jinx myself by posting this too soon......BUT....... Yes that is a 92% oxygen saturation! While SLEEPING!!!!
Maybe you do not understand my excitement about this.... let me explain
Severin has NEVER been off of oxygen at night for his entire life, most of the time he is on the "Os" at nap and bed about 14 hours a day- he should have been on it 24/7 but who can tether a toddler to a tank? Not me!
On oxygen Severin's sats RARELY ever went above 77%, there was those 3 days after his stent was placed that he sated 83%, but other than that his normal range before surgery was 68%-73%. Keep in mind those of us with normal hearts sat 98%-100%. When everyone sleeps our saturations naturally drop by a few percentiles. So a 92% while sleeping is an absolute DREAM COME TRUE!
Not only is he off Lasix, he has kicked the O2 habit as well! Not too bad for a little broken heart....

Cardiology Jan. 14, 2013

Severin met with Dr. Su. It is fun to ask him "Who is your heart doctor?" "dackta Seau" "Who fixes your heart?" "dackta Kahzah, he name AK" This was an AWESOME appointment! I marked "no" for every question; I really have zero concerns for Severin from a heart stand point. Of course I will always worry, but he is really doing great. He takes FOREVER in Xray because he has to stop and chat with everyone and collect stickers from them. There was another family in the waiting area, and he walks right up to the Dad (who had his phone in hand) and asked to play a game. He makes friends everywhere. While we are in clinic he sees his "peeps" and stops to show them his cool new moves- which is usually jumping or galloping like a horse, and the occasional turn in to the dog named Smokey and roll around on the floor and lick things. Oh yes he is Mr. Personality! His SATS were high 90s they read 97 but I don't know if he has ever been 97 in his whole life. He was brave while they put on stickers and made him look like an octopus. He was a bit wiggly for the 2 blood pressures but they were still good. He gets to drop a dose of Lasix- so only once a day for 2 weeks and then off it completely. He may not even need to have a cath in the summer. As always we go at his pace.
Before we left Dr. Su said "look at him" of course I start scanning Severin looking for something I missed, or should notice.. Then he says "this is what you have been waiting for, for 2 1/2 years" This means a lot coming from Dr. Su. I have had a lot of very frank conversations with him. I wondered if what I was choosing for Severin was right. I didn't want to jeopardize his small quanity of life with poor qualtity.
But you know what? He is worth every bit!

Christmas time!!!

The great anticipation on the stairs waiting to go up to CHRISTMAS!!!

 Oh Toothless Johnathen. He was soooooo excited

 She is REALLY excited about her new baby, she hasn't put him down

 Sevie Loves his ELMO- and bursts into song. Nanananut Elmos world!

 Johnathen got a DS, and "you can play it while it charges!"-J says  "oh goodie" mom thinks

 Just Dance Disney is a real favorite

cookie making 101

Neleh has a cookie exchange for her Preschool Christmas Party tomorrow. She is my "perfectly perfect" child for anyone who knows the story Mooseltoe. We have talked since last Friday about what kind of cookies to make. I was going easy breezy with the pretzel, rolo, m&m but no rolos on my ONE outing to Walmart. I guess everyone else had the same idea. I had her look through cook books. I told her about reindeer looking cookies- she needed me to "look that up" meaning google or pinterest so she can see it. Alas we decided to do roll out sugar cookies so she could decorate them.

Lots of sprinkles!

Then we even went a little more crazy and made "snow balls" with the marshmallows

We got this idea from Pinterest. I am thankful the 4&5 year olds these are made for will think they are great. These were way cuter on Pinterest. They are an upside down heart shape cookie, choco chip eyes, and marshmallow beard.  NAILED IT!!!! hee hee

CHiRp, cHiRp.....

Sorry blogity followers for the crickets chirping on here...
Here we are THREE weeks post Fontan. It is all a bit of a blur. Severin did really well for the first week home. He slept, ate, healed, his pain was under control, we were finding our groove. I made an awesome dinner on the 29th. I felt like me again, and I could handle my world.
Then the night terrors started, and a cough, and fluid positive, and zippo in the sleep department. Severin wakes up at midnight and stays in a delirious state of awake until about 5 am. Or if he somewhat stays asleep he wakes up crying out every 20 mins or so. He feels around to make sure I'm there, and then falls back to sleep. Of course I am sleeping next to him otherwise I would never sleep. His cough sounds like croup is coming but it has been 4 days and it hasn't gotten worse. On one of the "no sleep" nights he only got one dose of his lasix, after that his eyes are more puffy. His left eye was really red and blood shot looking. I thought he might have pink eye, so I started an antibiotic. It didn't seem to make a difference. Fluid retention is a common complication of this surgery. He is so grumpy. His sats are still 83-90 which is awesome. Cardiology wants post Fontan kids to stay above 85%.
Aside the normal Severin worry. My Sweet Grandma went to Heaven on Dec. 5, at the ripe old age of 91. I knew she was deterorating. The weekend before Sevs surgery she fell and broke her leg and her foot. I couldn't go and see her at the hospital, because I needed to keep Sev and myself very healthy. After her fall she stopped eating and drinking, and just slept. I was able to visit her a few times, and the Saturday before she died I spent a long time with her doing her hair, fluff and puff. She talked to me, it was a quiet voice, but it was good for my heart to hear her talk. I love her so much. I can only imagine the sweet reunion in heaven, she has been without my Grandpa for 20 years. I am filled with so much gratitude for this Woman, I was blessed to call her Grandma.