Mr Jonah is an extremely odd child when it comes to his health, but has become wonderfully delightful when it comes to his personality and his looks...well, he is a small bundle of cuteness overload!!
Jonahs blood work (labs) came back 2 weeks ago. They showed that Jonah does NOT have a t-cell deficitantsy (yay!). But that indeed there is great concern about the "memory" of his cells. I don't want to get that much into the findings, (due to a former post that I learned a hefty lesson about) but Jonah's body is responding to each illness he catches as though it was the first time he was ever exposed to it. This is perhaps why a cold that would make you or I feel just a little congested, wipes Jonah out and sometimes lands him in the hospital. His immune system is not "remembering"...but indeed he does have one!
We will be doing more tests and more blood work over the next two months. If the doctors do not see a difference within some of the tests, then Jonah will start a process called IVIG. (click to read more on IVIG)
Jul 17, 2011
Jul 14, 2011
What's best?
Some days I wish that time would stop ticking away. I need to catch my breath, feel my pulse, and hear my exhale. I need to find my center. I need to feel connected to me once again. I must learn how to stop, how to focus and most importantly how to deal.
I think I have decided to take fall semester off.
No good reason, only that I need a long (really, really long) mental health day (semester). I have been deliberating with my self as to what the "right" decision is and I am at a stand still. Both are reasonable choices... Go to school in the fall, continue towards my higher education, or take time off and re cooperate, acknowledge, digest, except, and center myself from what the last 3+ years has dished out. I still find myself in denial.
Because of that denial I have chosen to turn my cheek and not deal with life in a meaningful way. Instead I cram as much as I can into every second of everyday doing things for everyone.... everyone but me, just so I don't have to deal with the emotions that have been building and building. Oh, and have gained quite a few Lbs too.
Both kids will be in school full time starting Fall. Though this decision makes me feel uneasy, makes me feel like I am a lazy person, makes me feel like I'm letting myself and others down I recognize that this is the attitude and self judgment that I continuously place on myself. Very unhealthy I might add.
Who knows, I may regret this decision or this might be the best choice I have made for my sanity. Because time will continue to go forward I will learn the consequence of this decision soon enough. Let's hope it's a beautiful one.
I think I have decided to take fall semester off.
No good reason, only that I need a long (really, really long) mental health day (semester). I have been deliberating with my self as to what the "right" decision is and I am at a stand still. Both are reasonable choices... Go to school in the fall, continue towards my higher education, or take time off and re cooperate, acknowledge, digest, except, and center myself from what the last 3+ years has dished out. I still find myself in denial.
Because of that denial I have chosen to turn my cheek and not deal with life in a meaningful way. Instead I cram as much as I can into every second of everyday doing things for everyone.... everyone but me, just so I don't have to deal with the emotions that have been building and building. Oh, and have gained quite a few Lbs too.
Both kids will be in school full time starting Fall. Though this decision makes me feel uneasy, makes me feel like I am a lazy person, makes me feel like I'm letting myself and others down I recognize that this is the attitude and self judgment that I continuously place on myself. Very unhealthy I might add.
Who knows, I may regret this decision or this might be the best choice I have made for my sanity. Because time will continue to go forward I will learn the consequence of this decision soon enough. Let's hope it's a beautiful one.
Im Back... and Im wireless...kinda!
Ah Finally! I have not had my laptop or PC running in an entire month! (relying solely on a smart phone bites and I don't envy those who do this as a constant!) Mr. Jonah broke something that hooks into the computer.. yadda yadda we needed to get wireless I procrastinated we went to the mall last Friday ran into some wireless Kiosk peeps signed here initialled there... waited a week for some guy to do something and walla I have spent the last hour and a half installing our new Qwest wireless only to unhook and learn that I have no clue what the hell I'm doing. and so folks I'm online and wireless, but ironically still hooked up to cords because I'm not sure how to be online and unhooked. Lame!
I have lots to share, but I will break it up so my posts don't drag on.
I have lots to share, but I will break it up so my posts don't drag on.
Jul 5, 2011
Holding on tight
I'm typing from my phone so please excuse any crazy typos. Last monday I took jonah in for blood work.when the results came in the doctor thought it would be best to have an immunologist go over the results because true to jonah style, his labs were peculiaa nd difficult too read.i made the appointment with immunology and was told the next available appointment would not be till august 18. I asked to be placed on a cancellation list and much to my surprise j landed himself an appointment for tomorrow morning. I am so nervous! I am fearful of everything when it comes to my baby. My brain cells are fried I have no clue as to what I need to ask.
Jun 15, 2011
Slacker mama
I feel the thrush hold of chaotic-ness trying to beat down the wall I have cemented down. Jonah is up for testing to see if indeed he does have an autoimmune dissease but I just cannot bring myself to make the appointment with the doctor. I still haven't taken him to do the blood work. I know how this must sound, but please don't judge, I am just not sure I can physically nor mentally handle the news, and that scares me. I am so in love with this child of mine I just cant bare knowing that his already challenging life just might get more challenging. Just thinking about it makes my heart break.
I know the tests and the appointments need to be made and I will do it. just not sure if it will be today.
I know the tests and the appointments need to be made and I will do it. just not sure if it will be today.
Jun 6, 2011
step by step....oooh baby (thank you NKOTB)
Isaac and I celebrated 10 years of marriage on the 4th of June. It was fun, it was romantic it was everything and more. I can't stop smiling it was so wonderful. I have forgotten how much fun the two of us have when we are not dealing with the chaos of life. I can't wait to escape again, only one of my favorite medical mommies is heading for the California hills soon. Boo! Who will take J? Anyone??? Hmmm, I'm sure I have leverage on at least one of you!
The Ped called on Friday to set up testing for the adorable Jonah. He needs to be off steroids for 30days and so far he has been doing great with no withdrawls. Oh, and he has one week under his belt and needs to do 3 more before they will take his blood. I might be a fool for writing this but deep in my heart I just don't think Jonah has an autoimmune disease. I have stoped thinking about it or wasting energy on it. Because I see a boy who thrives to live life, I just don't see him as a sick and fragile child we once knew. Thoughts???
The Ped called on Friday to set up testing for the adorable Jonah. He needs to be off steroids for 30days and so far he has been doing great with no withdrawls. Oh, and he has one week under his belt and needs to do 3 more before they will take his blood. I might be a fool for writing this but deep in my heart I just don't think Jonah has an autoimmune disease. I have stoped thinking about it or wasting energy on it. Because I see a boy who thrives to live life, I just don't see him as a sick and fragile child we once knew. Thoughts???
Jun 1, 2011
Smiling all the While
I'm so giddy tonight! Could it be because Jonah is being nice to all of us? Or because I will be going to the "Big Apple" Friday night with Isaac to celebrate 10 years of pure... hmmm, struggles? Lol.
To be honest, I'm quite nervous about going to New York, but when you have a hubby who gets free flights and great friends (and I mean great!) to take kids for us, well, gee there really is no excuses for us not to go and celebrate 10 years of marriage. After all we never had a honey moon. And the past 3 years and 7 months have been nothing but a rush of ups and downs that has led to many stressful days that lead to months that have turned into years. Yes... We deserve to escape and enjoy ourselves. (but yes, I may chicken out so don't hold it against me)
Because I am a frugal mama/wifey I have managed to create a mini (and I mean mini) vacation under $100.00 bucks! (wha? We fly free, it's do-able!) I have managed to book a flight that flies through the night landing in NY right after the sun rises. We will be in Manhattan for 12 hours then hop back on the plane for home. We won't be getting lots of sleep but hey, we're young, we can do it!
To be honest, I'm quite nervous about going to New York, but when you have a hubby who gets free flights and great friends (and I mean great!) to take kids for us, well, gee there really is no excuses for us not to go and celebrate 10 years of marriage. After all we never had a honey moon. And the past 3 years and 7 months have been nothing but a rush of ups and downs that has led to many stressful days that lead to months that have turned into years. Yes... We deserve to escape and enjoy ourselves. (but yes, I may chicken out so don't hold it against me)
Because I am a frugal mama/wifey I have managed to create a mini (and I mean mini) vacation under $100.00 bucks! (wha? We fly free, it's do-able!) I have managed to book a flight that flies through the night landing in NY right after the sun rises. We will be in Manhattan for 12 hours then hop back on the plane for home. We won't be getting lots of sleep but hey, we're young, we can do it!
May 29, 2011
Deepest Fear
Our deepest fear is not that we are inadequate.
Our deepest fear
is that we are powerful beyond measure.
It is our light, not our darkness,
that most frightens us.
We ask ourselves, who am I to be brilliant, gorgeous,
talented and fabulous?
Actually who are we not to be?
You are a child of God.
Your playing small doesn't serve the world.
There is nothing enlightened about shrinking
so that other people
won't feel insecure around you.
We are all meant to shine as children do.
We were born to make manifest
the glory of God that is within us.
It's not just in some of us; it's in everyone.
And when we let our own light shine,
we unconsciously give other people
permission to do the same.
As we are liberated from our own fear,
our presence automatically liberates others.
- Marianne Williamson
Our deepest fear
is that we are powerful beyond measure.
It is our light, not our darkness,
that most frightens us.
We ask ourselves, who am I to be brilliant, gorgeous,
talented and fabulous?
Actually who are we not to be?
You are a child of God.
Your playing small doesn't serve the world.
There is nothing enlightened about shrinking
so that other people
won't feel insecure around you.
We are all meant to shine as children do.
We were born to make manifest
the glory of God that is within us.
It's not just in some of us; it's in everyone.
And when we let our own light shine,
we unconsciously give other people
permission to do the same.
As we are liberated from our own fear,
our presence automatically liberates others.
- Marianne Williamson
May 28, 2011
Funny Boy!
Jonah is becoming a master of imitating! Very funny and entertaining! He doesn't have a ton of words and even the words he has come out sounding funny to the untrained ear (due to the speech apraxia). He watches people and studies their body language and then automatically masters it. It is a sight to see! However Jonah has no filter of the appropriate time to show off his "talent" and I am finding that he will mimic as soon as he sees fit to do so. Even if the Home Depot guy is standing right there.
In other exciting Jonah news.... Jonah has started to call me "mama"! This is very very exciting for me! I have waited 3 years and 7 months to hear those syllables put together! I was first just a grunt, then I was Sarah "the-a" then I was "momo" (this was both me and Morgan) And now, finally I am mama!!!
Earlier in the week I picked J up from his bus and asked (like I do everyday) "How was school Jonah?" To which he usually will look back at the bus, point, and say bye (to the bus, as if he was waiting for it to say "Bye" back). But instead of pointing to that big yellow bus he LOOKED ME IN THE EYE AND SAID FINE! Let's recap: I asked J how was school today, he looked me in the eye and said "fine!" It brought tears to my eyes. This was the first step of real communication. Suddenly all those "pretend" dinner conversations we have where we have a nightly repetitive conversation for Jonah to watch and learn from and the ball passing game where we teach him turn taking for conversation.. well all of the silly stuff was so worth it in that moment! I saw my J getting it! Something was clicking! Something is clicking! I'm excited to see how the next few weeks unfold with his language.
In other exciting Jonah news.... Jonah has started to call me "mama"! This is very very exciting for me! I have waited 3 years and 7 months to hear those syllables put together! I was first just a grunt, then I was Sarah "the-a" then I was "momo" (this was both me and Morgan) And now, finally I am mama!!!
Earlier in the week I picked J up from his bus and asked (like I do everyday) "How was school Jonah?" To which he usually will look back at the bus, point, and say bye (to the bus, as if he was waiting for it to say "Bye" back). But instead of pointing to that big yellow bus he LOOKED ME IN THE EYE AND SAID FINE! Let's recap: I asked J how was school today, he looked me in the eye and said "fine!" It brought tears to my eyes. This was the first step of real communication. Suddenly all those "pretend" dinner conversations we have where we have a nightly repetitive conversation for Jonah to watch and learn from and the ball passing game where we teach him turn taking for conversation.. well all of the silly stuff was so worth it in that moment! I saw my J getting it! Something was clicking! Something is clicking! I'm excited to see how the next few weeks unfold with his language.
May 25, 2011
Off of Pred
Today is J's first day off of Prednisone (steroids) in a while. I am crossing my fingers he is able to stay off of them for the next month so he will be able to do T-cell testing. I used to despise the steroids but this time around I have been impressed at how well they worked on him. He is breathing so well and I rarely hear a wheeze out of him.
He starts working with a behaviorist in early June. I'm excited to see what answers she has for Isaac and I. I know I tend to put all my eggs in one basket but this is how a desperate mother operates. Someone has to be able to help him. I find myself asking the question "would I rather have the lung disease or the autism to deal with?" Everyday my answer changes depending on what the problem of the hour is. At this moment I will choose lung disease. Autism sucks.
Oh wait, I don't have a choice. We are dealing with both and this is life. His life. Tell me it will get better... for his sake and my sanity.
He starts working with a behaviorist in early June. I'm excited to see what answers she has for Isaac and I. I know I tend to put all my eggs in one basket but this is how a desperate mother operates. Someone has to be able to help him. I find myself asking the question "would I rather have the lung disease or the autism to deal with?" Everyday my answer changes depending on what the problem of the hour is. At this moment I will choose lung disease. Autism sucks.
Oh wait, I don't have a choice. We are dealing with both and this is life. His life. Tell me it will get better... for his sake and my sanity.
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