I love to blog. Through blogging I have found other blogs that I read quite frequently. I have been able to connect with other "Medical Mommies" who's children have different illnesses then Jonah, but as mommies we are on the same page. As Mommies, we have dealt with great & not so great doctors, we live "different" lives then those with "normal" children, we have had to fight for our children and watch them struggle and fight just as hard. It's strange how comfortable I am around others who have children with illness. There is an unspoken word of "yeah, I know, I get it." There is not stares, not offensive questions, there is really no need to explain. We just get each other. We celebrate our children's success and we pray and wish for the best when things just aren't going how we would like them to go. Its a special connection & one I would not be able to endure with out.



This is Jaxson


One of the blogs I follow is a little guy named Jaxson. I have posted about him before on my blog. I read his blog regularly, and this morning as I read it, I just cried. Jaxson is back in the hospital. He also is a regular at PCMC. His mom and I have crossed paths unknowingly a few times at the hospital. I finally got to meet Jaxson at his birthday party. I have been following his blog for the past year and have been inspired by his & his families determination to keep pressing forward. Perhaps this is why I am so sad that he is back in the hospital.They are so diligent about him and his life. I look at this precious boy, and I just feel connected to him. (Besides the fact that I think him & Jonah resemble each other), I look at him and think of how close J was to receiving some of the same hard ships that Jaxson has endured and little Jaxson and his mom just keep going.

I ask that you will pray for this family. Jaxson has been through so much in his short 4 years of life. Please take a second and read his blog, I know you will be touched by the words his mom writes. Then go and hug your own babies, and feel grateful. I hope you are all having a wonderful winter day, I will post again soon. Big news to share!

http://jaxsonsfight.blogspot.com

I am just full of good news!

Like the title of my post reads "I am full of good news!" Hmm, what should I share first...

Okay, Well On Saturday 1/23/10 my sweet sweet son started to walk. Yes folks, he's walking! it was so funny, I started doing therapy like we do every morning, played the same games that we play every morning but that day was just different. For one he was not his fussy steroid attitude self. He was actually happy, and wanted to do Physical therapy. So I sat on the Ottoman and Jonah stood in front of me, and slowly I kept backing up, so that he could stand with no help....I wasn't trying to get him to walk, just balance himself. He took one step, then two, then he was at the couch again so I pulled him back totally impressed and decided to make it longer and people this fighter walked a whopping 6 steps! I was so amazed! Jonah is walking, I just kept yelling it in my super excited high pitched voice, in hope Isaac )who was in the shower) would hear me. When he finally got the message he jumped out to watch our little miracle take his new steps with out any assistance. however, now that I know he can walk, he still prefers the comfort of using his walker.

My second great Fabulous, Christmas present feeling news is that We got the results back from Jonah's MRI. The nurse who is also a great friend read them to me over the phone. I was in shock and so happy to hear that everything on his MRI was NORMAL! I didn't fully believe it so she read it again. OHHH! If I could transport this feeling that I got to each one of you, you too would be over come by emotion. It was so wonderful to hear. I still remind myself daily what a miracle this boy is. he is so amazing to me, and so inspirational.

Finally this slide show has uploaded!!

Make a Smilebox slideshow

Medical mommies, I have a question???

Wow! What a week! This week we have been swamped with medical appointments. However we did get those 2 big appontments out of the way. Yesterday Jonah had his Psych eval, and hearing rechecked, and today he had the MRI of his brain done. Let me tell you...It's been a week for me! I am glad to see this week coming to an end. I have to recharge because next week is filling up on my calendar, it looks like we will have only one day appointment free.

To all you other medical mommies;How do you do it? What kind of schedual do you have and what works best?

Jonah 01/2008

It's been 2 Years!

2 years ago today Jonah was brought into the ER at PCMC. Little did I know then, that our lives would forever be changed. He had caught RSV at only 13 weeks old. I was so new to the medical world, I remember excusing myself while they threaded a long suction tube down his nose to suck out mucus, to help him breath. Little did I know I would one day own that machine and would be expected to do this on a daily basis. Jonah was admitted and thats the begining to his stroy. After 3 failed sweat tests and one failed genetic testing Jonah and I went to Dr. Deterding a pulmonary specialist and there he was diagnosed with having non CF-Bronchiectasis. This is only the lung disease of Cystic Fibrosis.

Ironically Jonah is sick again this week. He went to the dr where the dr suspects that Jonah once again has RSV. The dr had said that if J never got the Synagis shots, he would most likely be back in the PICU. Looks like we've dodged a bullet!

Sledding and other Breaking News

A few weeks ago Isaac and I took the kids sledding. We had a lot of fun! Here are a few pics that we snapped while going up and down the hill. Both kiddos had a blast. We even sent Morgan and Jonah down all by themselves! My favorite is the one with Morgan pulling the sled and Jonah trying not to fall out!

***Jonah update: Jonah is sick once again. I was blaming it on the bad air quality that we in northern Utah have been suffering from, but now he is running a temp and non stop runny nose. He is back on steroids, and slept off and on through the night


I can't stop laughing! It was that funny.


Weee, Isaac and I had as much fun as the kids!

New year... New Everything!

Happy 2010! I am very much looking forward to this year. I have spent to much time dwelling on things I can not change. This year I will stay focused on only things that I do have control over.

I would like to now let go of my guilt. I have so much guilt that I tease sometimes that I should be Catholic and not Mormon. Well I am saying good bye. I am releasing all of it to the universe, and going to be positive that I will not let it creep back into my life. We all have guilt but I may stretch mine out and I loose much sleep over it. So Good bye Guilt! My biggest and hardest thing to get over is the fact that I blame myself for Jonah being sick. Urr, I'm getting emotional just letting those words out. Yes I did bring him to daycare but many parents do that. Perhaps it was just one of those things, wrong time wrong place. I will never know, but I cant go back and make any thing different. ITS NOT MY FAULT...that's my new mantra!

I was hoping to post some pics but for what ever reason I am incapable of posting pics from my lap top and so I must use my desk top...and well its just inconvenient. I will however get to it by Monday...promise!

We had such an amazing Christmas. Isaac for the first time in 3 years had Christmas off. I had the Christmas that I fantasize about. The Christmas where it's not about presents but about family, stories, traditions and FOOD! Oh and of course those Christmas miracles... A few days before Christmas I was running Jonah's vest and Isaac was putting Morgan to bed and we heard a loud knock on the door. I went out and no one was there. I looked down and there was a white envelope with our last name on it. I got Isaac and we opened it and found over $100 in cash. How amazing is that? Then On Christmas eve we had received more Christmas love. Isaac and I have been raking our brains to figure out who would do this for us, We then decided to just be grateful and thankful that we have so many wonderful people in our lives we couldn't choose who would do this for us. So If you were the family or friend, please know that we are so thankful.

Jonah has been doing so well! I am so excited for all of the new stuff he is doing. I am determined to make sure Jonah beats the odds! DETERMINED! So... what is he doing? Well he is doing really well with his receptive language. I say where's your nose he points to his nose...(in slow motion) Then I can ask him to get his walker and he comes down the hall pushing his walker! These small things are wonderful things and are large blessings in our life! He was off of oxygen for about 5 days, but this last boast of crappy air has sent him back on it...its always good while it lasts.

Morgan goes back to preschool on Monday! thank goodness, this girl is crazy. I love her to pieces but I get so worn out with doing this then that then back to this..ugg the life of a 3 year old who thinks shes 12...some of you understand I'm sure. Her new must have is her which hat. Yes people I go through grocery stores, walks around the block, even short car rides with my Morgan wearing a black pointed which hat. when you ask her if she is a which she will tell you no, that she is a which robot astronaut. She always makes me laugh!