Jul 6, 2012

Morgan is Six! (3/8/12)

Morgan is SIX! 
~however Morgan refuses to be SIX...not until she looses a tooth!

*Loves being outside
*The astronaut stage is phasing out
*Loves Disney princess EVERYTHING!
*Reading very well
*Favorite food is mac & cheese and purple grapes
*Best friend is Jonah
*50 lbs
*Goal is to ride a bike with no training wheels.

Mar 25, 2012

Welcome to Walmart

For those that are less fond of "Welcome To Holland" I think this will be the Poem for you ;) Welcome To Walmart Having a baby is going to Costco on a Tuesday morning with your executive membership. It's quiet and the isles are wide and clean. People smile at you and some even give you high fives. There's treats on the end of the isles for you to try. The cashiers talk to you and call you by name. If you're lucky, Pete on isle 5 will say your name in his breathy sultry voice (I have no idea what that part has to do with parenting, but I liked it). Now, getting through Costco isn't always easy. Sometimes you get stuck behind a silver-headed centenarian who still uses a check but doesn't have an ID because they took her drivers license long ago. If it's your first time to Costco, it could be overwhelming. There's a LOT of stuff in there. You get confused. You get lost. You ask people around you and they are happy to help you on your way. Because they've been there before. Costco is even more challenging when you have other kids to take with you. But you'll make it through- because it's worth it in the end. So you think you're headed to Costco. Everything seems normal. You take the same roads. But when you get there BAM! It's a freaking Walmart. You don't want to go to Walmart. You've heard about it. More and more people around you have been having to go to Walmart. You don't want to be a part of that club. You have an executive membership to Costco, dammit! But in you go. The isles aren't wide enough for you to get around the meth head who's hotwired the motorized cart. It's loud. It's frustrating. People don't look you in the eyes. There are no treats on the end of the isles and no one gives you high fives. They mostly just keep away. Your anxiety seems to peak and you head to the nearest dark corner in the store hoping to lie down in the fetal position and rock a little. But you can't. Because the floor is always dirty. You can't take a break at Walmart. You've just got to endure. You find your way around and realize it's not ALL bad. It has lots of perks. Inside, you meet other Mom's like you. Who found themselves stuck at Walmart. They are some of the greatest people you've ever met. Occasionally, a stranger will walk by and smile, and it means more BECAUSE you are at Walmart. Your friends will call you from Costco and tell you all about how wonderful it is. You'll be sad that you can't be there with them, too. But you've realized that in many ways, Walmart is better than Costco, you just have to REALLY look hard to see. There's much more variety. There's more depth. You can buy 100 goldfish, everything you need to make pretty jewelry and milk in one place! You didn't know there could be so much good stuff in one store. But Walmart still sucks a lot of the time. It'll always be loud. It'll always be claustrophobic. But in the end, you'll find that your a much stronger person from having to go to Walmart than if you had to go to Costco.  And now that you're there, you'll take some time to walk to the furthest back corner and find the mother who is looking for a place to lie down and rock back and forth. Help her.  Taken from Mostly True Stuff

Mar 13, 2012

PICU




I love being a mother. I love the sweet rewards motherhood brings. Nothing comes close to hearing your child whisper "I love you" in your ear. Or having them hold just one of your fingers in their entire hand. I can't imagine my life without those tender moments. I don't want to imagine it...it hurts to much. Jonah was admitted to the children's hospital the last week in January, after I called 911.
His oxygen needs were more then what we were set up for at home. The night was a sleepless one for me as I paced the hallway and took vitals every 45 minutes along with giving Jonah hourly puffs of albuterol and cpt. I knew where this was headed when he fell to the high 70s on 2 lts of oxygen. At 4:54 I called 911. 9 minutes later one ambulance and one fire truck came to our door. I directed them into Jonah's room where he was laying down. The emt started taking his own set of vitals while another emt asked me a number of questions about Jonah. "15 lts, his sats are going up!" the emt who was working on Jonah said. 15 lts. Wow that is a lot of oxygen. Blow by of course but still. They strapped Jonah into his car seat and transported him up to pcmc where we met a few familiar faces. (maybe the only bonus of being a frequent flier, we know a lot of medical personnel) on arrival Jonah was still on a high amount if blow by oxygen but in order for the hospital to get a better idea of where his base line is they removed all supporting oxygen from him and we all watched the monitor as his numbers fell from 100 down to 73. Yeah, I knew what this meant and yes, I found myself swallowing my heart. Jonah was being admitted into the PICU. He spent a long 4 days in there and when he was stable and adavan free (a whole other post in its own) he was moved up to the floor where he would finish out his oxygen ween. Jonah came home a few days later still on oxygen but at a more comfortable number. That was about a month and a half ago and Jonah is still on 24/7 oxygen. His needs have increased from 1/4 to 1/2 ltr. at night he is still on a full ltr. Okay, so I've been avoiding writing this as it is painful, and it was a horrible hospitalization. I'm not ready to share all that went on because frankly I don't want to face the possibilities of Jonah's life. I just wanted to document yet another hospitalization. I did really appreciate my mom taking a flight out here and spending the week with little miss Mo and taking care of us. Also to a few friends who stayed with Jonah so I could have a moment to be away. I have good women in my life. Such great examples of charity and friendship.

Jan 13, 2012

Strength of my Son

I remember the awkwardness when visitors come to the wide open PICU (pediatric intensive care unit) room where Jonah's life less body laid in a medial hospital crib. I would try to keep a smile on my face to help my company feel more at ease, but really how could you not stare at the 3 month old with tubes going into his mouth and on a device that was louder then loud and shaking his fragile little body just trying to keep him alive.



January 13 2008, 4 years ago today, Was the day I knew that my life was going to be different.

I still have trouble getting my head around all of it and I suppose that is because I am for the most part still "just surviving."  My family has traveled a very bumpy road with mostly just having the support of each other.  Our families are not in the state and friends have come and gone. Only the really brave friends have stood by our sides cheering us along when the road seems to rough.


I look at Jonah today and am in awe of his mighty strength.  Diagnosis after diagnosis, therapy session after therapy session, he is amazingly strong. I love this child with all my heart.

Jan 5, 2012

Diagnosis 101

So, I thought I had posted on this before but I cannot find it... Must have been something I day dreamed. I will post this for those who are confused, and perhaps for myself because it is too much at times to keep up with. Jonah to date: Oxygen. feeding tube placed for aspiration which has/still does cause conflict when swallowing thin liquids ie, water. Nissan surgery. Adenoids removed due to airway issues. Chrionic lung disease (this is what they call it when your child is always sick). Non Cystic fibrosis Bronchiectasis, Basically the lung disease of cystic fibrosis with out the enzyme issues. PDD-nos (pervasive development disorder-not otherwise specified) "autism". Speech apraxia- slow motor planning. Sensory processing disorder. Priapism- errections lasting over a long amount of time (jonah's record 16 hours). And soon we will find out why this kiddo has not grown in over a year... I think this is the list. I might be missing something, I will add onto it as I remember. You see I just call this list by name, I call it Jonah. In real life this list is one of the most amazing creatures you will eve lay your eyes on.

Dec 27, 2011

VERY Merry Christmas

It was! It was! Indeed we all had a very wonderful Christmas! Though the beginning of the weekend seemed very touch and go, Like my boy does, he pushed through it! I am so glad he did.

Christmas here was amazing.  There was definitely a Christmas spirit that my entire family felt. We had a few secrete Santa's, and that really made this day an even better one. Not because of the gifts my family received but the gift they gave with out even knowing so. 

The gift I so badly needed: To know people cared about me, my son my family. It's such a lovely feeling to know that people are mindful of you, especially when you feel so alone. I have a hard time (fear) asking for help. I would rather drowned then ask (bother) a friend for a floatation device. Sounds silly, this I know.  Imagine you were afraid to speak in front of people and then you were forced up onto a stage to give a speech to thousands! What would they say?  How would they respond? Would they snicker behind your back?   Well, that's how I feel. I need to get over this fear I know.  But I have to say that having friends/family throw me a flotation vice in this time of need was truly a Christmas gift that I will always hold close to my heart.

In other breaking news....

Today marks DAY 1 of toilet training Jonah!
Jonah is starting to go down on his steroids!
Morgan has Pink eye!
I got the Kitchen floor moped!...3 times! (first line of this list)

Dec 22, 2011

and yet again.....

Tired.
Ran down.
still surviving.
These are the words that continuously ran through my mind today.

Most families are shopping for gifts, going to Christmas parties, enjoying festivities of sorts and admiring Christmas lights outlining their neighborhoods. Not here. Nope. Here, this night I lye next to my baby debating my next move as I hear each inhale... and I guess some would refer to the snorkeling sound escaping his mouth as an exhale.

I think I can....I think I can.... I can! I can! ...
I just don't want to. Life with a special needs child (yes, even a child as cute and adorable as mine) is difficult. It's draining, but yet, do I dare say it???
Rewarding.

Ah yes, REWARDING! I just need to keep that word, those beautiful moments that I do have with him playing in my mind as some sort of a back ground noise. I need to stay focused... hmm, not my strongest skill. 

Can I just share how frustrating it is to have a child discharged just a week ago from a 10 day stay in the hospital only to have him sick again???  Ugh. It just rattles me knowing that this kiddo of mine has to go through this EVERY WINTER!  Today the plan was set that Jonah would start back on steroids on a hefty dose and gradually go down on the dose over the next 3 weeks. He was also given a script for Augmenton to kill bacteria growing in his lungs. The doctor wants to see us again tomorrow to re-evaluate Jonah's status.  If he seems worse he will be admitted.

 Boo-Hoo!

 I don't get it. I don't understand why he has to endure all of this. 

Nov 16, 2011

To my Son

Dear Jonah, you are 4 (Happy Birthday) and strangly enough I look at you as you are still my little baby.  I am so in love with you and your spirit to live life.  You are so funny and whitty. The hard times seem to be a thing of the past though at times, I feel like we are never going to reach the top of this mountain we climb, I feel comfort looking down and seeing how far we have made it in these four years.  I know that the road ahead has no road signs, no map, no directions but I also know that you are strong, and as your mama I too will be strong.

On your 4 year old "well child check" the ped found it concerning that you have had no growth in height since last November. She has ordered many tests and has set up an appointment with yet another specialist.  I can't lie, I have not been worried about your health in  some months but this keeps sneaking into my mind and im finding myself becoming more of that crazy mama of the past.

I have hope. As a family we have hope.  We know that there is a plan for your life and that you will be someone amazing.  Im grateful that I am your mother that I am the one you cry for and I am the one to wipe those tears away. I love you son. I hope that this year will surprise us all and you will have a hospital free year. Happy Happy Birthday!

Oct 29, 2011

Infectious

“The only people for me are the mad ones, the ones who are mad to live, mad to talk, mad to be saved, desirous of everything at the same time, the ones who never yawn or say a commonplace thing, but burn, burn, burn, like fabulous yellow roman candles exploding like spiders across the stars..."




- Jack Kerouac (1922-1969); American novelist and poet

Oct 23, 2011

Crow Troubles

This is the scare crow.  The scare crow that kept Jonah's full attention for over 45 minutes. I was waiting for Jonah to knock it over after the scare crow would not respond to the many "hello's" that were spoken. nope.

But then...The frustration set in