I spent 2 hours at the hospital and all I got is this stupid drawing!

Okay finally I have found a second to myself. Jonah FEES test was a no go. I was livid! Instead of having the test done the doctors had an hour and a half "Meet and Greet!" I was, once again, livid! I don't understand what happened, but during our "meet & greet" some new stuff was discussed. Just more PCMC lack of communication BS. It's getting tiring!

Jonah will be rescheduled for his FEES test and then admitted for another PH probe test. There is thinking that the Nissan surg that was performed in 2008 may no longer be intact. We have had suspicion of this but nothing abnormal showed up on Xray. What do we know?? Well we know he is aspirating on something. If it is gerd that he is aspirating,well, then we are in the same boat that we were in back in Sept of 08. The PH probe will be inserted thru the nose and reads acid levels, thus letting us know if indeed he is still having gerd issues. I really hope not! After the GI Dr drew me a beautiful illustration of the esophagus I was free to go.

The Dr's also talked of moving up J's bronchoscopy, but adding an endoscopy as well, this way J wouldn't have to go under twice. (complications usually follow) So I am looking forward to getting answers about all of this. Answers are good! Right???

Later that night, Jonah spiked a fever of 103.7 I was so nervous! I am pretty good at handling breathing problems, but a fever? I just don't know about these "normal" parenting things. Oy, with Jonah, never a dull moment!

...

My stomach is housing a swarm of butterflies. Monday Jonah goes back up to the hospital to meet with a team of doctors. Luckily one of the doctors, See's Jonah in the F.U.N. clinic on a regular basis. The other is an ENT doc.

Jonah will have another Fees study done. the last time one was given, was before Jonah had his feeding tube placed in 2008. A Fees study stands for Fiber optic endoscopic evaluation of swallowing. It assesses swallowing, without X-rays. The (ENT) ear nose and throat doctor passes a small, flexible, custom-designed scope, attached to a camera, through his nose and into the middle of his throat. It will record pictures of his throat and voice box when Jonah swallows liquids.The FEES also provides information on how well Jonah swallows secretions - or identifies if secretions, liquids, are being aspirated into the airway. It will be the ruling as to if he will continue to be NPO (No liquids orally) or if we can return to a more "normal" with J and once again move forward to get him off a feeding pump. Of course our hope is for the latter.

I can't help but dwell on the fact that if he doesn't pass this will be another blow to Jonah's "catching up" with feeding. But on the other hand if he can't take liquids orally I know that it is because we need to protect his lungs.

The days may be long, but the years are short.

As I sit here on the couch typing, totally exhausted from today and I look around the room and see toys gaylor, with scattered shoes down the hallway, and entry way and all I can smell is the scent of "burnt" in the air from the hard boiled eggs I was making for Morgan, but walked away from only to come running back in when Morgan yelled out to me that the "eggs are not peeling" but later learned was that they were blowing up in the oh so hot and stinky and burned pan.... oh what a day!

When Daddy came home we decided to use some old gift certificates and go out for dinner...We decided on Chuck-a-rama, but at our house we refer to it as Chuck-ur-Gramma, There, we all partook of a wonderful buffet. (its always wonderful when I don't have to cook) Because we NEVER go out for dinner as a family, I let Morgan have what ever she wanted...after she ate 5 healthies. (fruit or veggies) And she counted! When she finished her 5Th healthy, she was ready for dessert! Her first choice was a Cinnamon crisp. At the table she announced that she LOVED CINNAMON! Isaac told her she needed to lower her voice because we were in a restaurant (or sort of) She then, even louder then before, said "What daddy? I said Cinnamon, I didn't say shit!"
Yes folks, true story. I'm embarrassed.

When we got home from our wonderful/most embarrassing thing in my motherhood life so far dinner, we decided to take advantage of daylight savings and clean up the yard in honor of earth day. We mowed, we pulled weeds, we weed whacked, we swept, we re organized and then we spread out a blanket, kicked off our shoes and the four of us laid down and watched the clouds pass bye, and the moon starting to appear. It was so fun. These are the memories I will cherish!

How I am so in love with my sweet family. I adore them, I am lucky to be with them.

Today will go down in J's baby book!

I am so proud of my little man! This kid puts his mama through hell some days, but days like today make it so worth it!

WHAT DID HE DO?

He

said

Quack!

He said quack! We were going on our morning walk, and while we were waiting for a friend to join us, Jonah and I sat down by the pond to watch the ducks & geese. The birds were making noise, I started copying then Mr. Man, POINTED at the ducks and said QUACK! I am just so proud of him!

This is the first word out of J's mouth that he put the sound and the meaning of it together! This is huge! We started doing a program with him called PECS and I am seeing results, and in love with them! It's not a perfect Quack, but it was perfect enough for me!

A Few weeks ago Jonah was diagnosed with having mild to moderate speech apraxia. It wasn't really a surprise, since this term has been floating around Jonah for a while now to describe his speech delay, Oh and Melissa had already diagnosed him:) Everyone who works with him now are just now deciding that that is indeed what it is. But now, with this one little word: Quack, I'm hoping to hear more spuing out from his sweet little mouth! Now I keep making him say it over and over, as if he is going to forget how to say it. Im so happy for him! You could se on his face how happy he was too!

Go Red Sox!

Morgan's baseball game was so much fun! I honestly could not stop laughing! All of the kids looked sooo small with these big 'ol bats! Hilarious. She loved it, she had so much fun, and decided on being # 3 after her request of being an astronaut number was denied. She even (finally) put her ball cap on. Go Red Sox!

Jonah, Jonah, Jonah~ for those who might be wondering... Jonah is on Zithromax a.k.a. Azithromycin. I think I will make a side post to list his meds, and if anyone has a better regiment of meds that works best for them, they can fill me in and I will run it by J's doc. As of now, his sats are doing great considering how crappy he sounds. He just has so much crap in his lungs. I am trying to teach him to cough, I think a few big & hardy coughs will help him clear alot of it out. Hmm.. we'll see.

Sick

Little Jonah is once again sick and back on steroids. I hate this game that we are constantly playing. My wish is that he could just be a healthy little boy that is full of energy. Okay maybe not FULL of energy but has enough energy for a two year old.

Jonah's lungs are full of mucus. I have needed to deep suction him every 4 hours as well as keep up with extra respiratory treatments. When I listen to him with the stethoscope all I can hear is secretions flowing back and forth with each inhale and exhale. Though he hates the deep suctioning, at this point it is a necessity to keep air moving. I am hoping that a week filled with steroids will calm his inflammation and make it much easier for him to breath.

On a lighter note...Morgan has her first T-ball game tonight! We are all so excited! I will post pics and info about her first game later tonight!

California

Isaac and I took the Kids on a mini vacation...It was great!

We had big plans to go to San Diego, but when you fly stand by, you always have that chance you won't make the flight you were planning on taking...that's what happened to us. We decided to not let this stand in our way, (since we already had the okay from the doctor to take Jonah, and went through the process of getting a special O2 machine that is FAA approved) so we checked flights that had open seats and hoped on a plane to Oakland. Morgan had her heart set on the beach so that's where we spent most of day one.We went to Monterey, and the Santa Cruz Beach Boardwalk. We had a blast.

If you are a friend or family member who lives in the bay area and are upset that we didn't visit or contact you so sorry! We wanted to just let Morgan do what she wanted to do and see. 2 days is not very much time, and with both our families and friends in Northern Cali, it would be impossible to go and see everyone so we opted to see know one, that way feelings wouldn't be hurt. We are planning to go back out again, as Isaac's dad is getting married. We are waiting to see if a O2 machine becomes available...if not Isaac will be there around the end of the month.

Happy Easter

All I need to Know,
I learned from the Easter Bunny!


Don't put all your eggs in one basket.

Everyone needs a friend who is all ears.

There's no such thing as too much candy.

All work and no play can make you a basket case.

A cute tail attracts a lot of attention.

Everyone is entitled to a bad hare day.

Let happy thoughts multiply like rabbits.

Some body parts should be floppy.

Keep your paws off of other people's jelly beans.

Good things come in small, sugar coated packages.

The grass is always greener in someone else's basket.

To show your true colors, you have to come out of the shell.

The best things in life are still sweet and gooey.

Dying Easter Eggs

Morgan has decided that her new name is Dr. Lerr!

That is the only name that she has been responding to since 2pm this afternoon.

WHY?

Let me tell you,

Isaac and I were in the front seat discussing Jonah. Because we are so ADD and conversations jump around we quickly got on the conversation of Easter...and dying Eater eggs. Morgan then put in her request for us to call her Dr. Lerr

At dinner tonight Mo asked us why the Easter eggs were dying! People she was kind of frantic! Trying not to laugh Isaac and I looked at each other, he gladly let me take this one. I still am not sure if she understands, we have decided to rephrase the activity as coloring Easter eggs!

Awsome Mom

Once you have been hit, you have to hit 5 awesome Moms..
Including the one who thought of YOU today and sent it to YOU...
If you get hit again, You will know you are Really awesome!
So hit 5 awesome moms on your friends list to let them know they are awesome

Before I was a Mom,
I never tripped over toys
or forgot words to a lullaby.
I didn't worry whether or not
my plants were poisonous.
I never thought about immunizations.

Before I was a Mom,
I had never been puked on.
Pooped on.
Chewed on.
Peed on.
I had complete control of my mind
and my thoughts.
I slept all night.

Before I was a Mom,
I never held down a screaming child
so doctors could do tests.
Or give shots.
I never looked into teary eyes and cried.
I never got gloriously happy over a simple grin.
I never sat up late hours at night
watching a baby sleep.

Before I was a Mom,
I never held a sleeping baby just because
I didn't want to put him down.
I never felt my heart break into a million pieces
when I couldn't stop the hurt.
I never knew that something so small
could affect my life so much.
I never knew that I could love someone so much.
I never knew I would love being a Mom.

Before I was a Mom,
I didn't know the feeling of
having my heart outside my body..
I didn't know how special it could feel
to feed a hungry baby.
I didn't know that bond
between a mother and her child.
I didn't know that something so small
could make me feel so important and happy.

Before I was a Mom,
I had never gotten up in the middle of the night
every 10 minutes to make sure all was okay.
I had never known the warmth,
the joy,
the love,
the heartache,
the wonderment
or the satisfaction of being a Mom.
I didn't know I was capable of feeling so much,
before I was a Mom


Thanks Grammy!