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.

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.

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)

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. 

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!

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

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



Change is in The Air

Parenthood. One of my most favorite television shows on the NBC network, and yet I get so frustrated while watching it.  I suppose it's because I see so many similarities that parallel with my life and my children... or child. (one of the kids on the show has Asperger's)

Jonah will be integrated into another classroom at the Autism school. The new class has a waiting list but 2 spots are currently open.  Well I guess one spot, because Jonah took the first one. Jonah's teacher put his name on the list in September because she recognized the growth he is making. I'm excited. I'm nervous. I'm crossing my fingers that he will shine in this class as he has in his other 2. This new class has children who are on the spectrum as well those who are neuro-typical. From what I understand the flow of the classroom is different then what J has been used too. It is more relaxed and there is a lot more play involved.  A lot more interacting with peers and less teacher directed activities. Jonah will not be in this class full time just yet, he is only being integrate so he will spend the mornings in his "old" classroom then in the afternoon, one of his teachers will assist him in the new classroom.  For right now this will be the routine. We are hopeful that Jonah will thrive in this situation and be ready to move into the new class by next Fall.

Empowered

Tonight I was invited to stand up for Jonah and share his story of Autism...or PDD-NOS

I met up with 5 other mamas who are just as passionate to fight for their child/ren and tonight we did so together!  Together all 5 of us spoke of our children in front of our representative Tim Cosgrove.  It was so empowering.  I felt like in an hours time we helped him understand. We were able to give this a man a look into our lives and a daily battle with having a child on the spectrum. It was so amazing.  There was a spirit there of love and compassion.  Rep Cosgrove had to pause as he teared up trying to convey his support for us and our families . It was so heartfelt, so inspiring  and so empowering!

I feel a change coming on! Please take a minute and follow this link!!!
https://www.facebook.com/autismvotes

Where have all my readers gone?

Seriously!  Where are you? Leave some love (by leaving a comment) so I know I'm not just writing to the www.

Okay then.

Mr Jonah FINALLY was approved for Viagra! If you are just tuning in to this BIG story here is the DL. Jonah has Priapism. Priapism for Mr J means that he has on going erections lasting well over 14 hours. It is a huge discomfort as one could imagine and causes many many issues with him focusing on his tasks at school as well as in therapy. My fight with the insurance company went on for 18 months! 18 months! Finally I won.  I usually do, because I am the mama bear who will not stop fighting for my boy.

Urology departments at the U and at PCMC still piss me off. Nothing new here. Why they won't send him to someone/somewhere to get this all figured out I do not understand, but believe me,  One day I will win that too!

Moving on...
I took J in for blood work last week.  The last labs that were drawn,  3 months ago (showing the immunologist that Jonah had not developed an immune response toward 3 vaccine) requiered him to be  re-vaccinated (ugh!)  and then do more labs. Friday we got results.  Jonah has built a response to the vaccines! This is wonderful on so many levels! He is making antibodies. Because of this fabulous news he will NOT be eligible for IVIG.  Shucks!

Isaac has found a temp job for the time being. This is awesome.  Though we will not be rolling in the dough anytime soon, it's nice that he has something.  We are blessed.

Miss Morgan has joined Girl Scouts of America.  She is a Daisy, and loving it. She is so happy and delightful to be around...most of the time. I Love LOVE Love her!

Me? Well I am crazy as usual.  stressing about anything that I could find to stress over.  I think its habit. Its sad when you have to remind yourself to take deep breaths. My wonderful friend, Lacey Rugg moved. Very sad.  Who will I commiserate with now?  Anyone?  Anyone?