Happy Halloween

I took a few Pre-Halloween pictures last week at a party we went to. Jonah a Pumpkin and Morgan an Astronaut of course.

One Million Dollars...What would you Do?

If I had a million dollars... I'd be rich.

first I would pay off these ridiculous medical bills that will forever haunt me, and in some cases never stop growing.

I would hire medical respite care for a few hours each week (mom's need a break too)

I would then hire respite care for some other mamas I know, who also need a break ;)

I would add another bathroom to my house with a full add on to the back...Oh and a new roof...ours isn't looking to good.

I would pay back all those wonderful people who have helped us financially.

I would donate money to help better research for lung diseases & lung transplants.

I would take two of my most favorite doctors (Parzych & Pfeffer) some where nice for dinner...& most of the RT's & RN's who are now like family.

I would hire a Gardener to create our very own Angels Garden (like at PCMC)...no green thumb here

I would build a special shelf that could house all of Jonah's medical equipment so his room did not resemble a hospital room.

I would take Morgan somewhere over the rainbow, she too has endured so much.

I would buy the time to make a difference in Congress to make the life's of special needs children a priority in stead of a budget cut.

I would pay it forward to all of those people; family, friends, & strangers who have helped us on our journey and who continue to help & support.

Then in the end I would have no more money, but I will still be rich...

Stop..Call first or go home

I have some worries about the H1N1 vaccine. I will not be having Jonah vaccinated. I have read to much about it and it scares me. Though many of you may think I have lost it by not getting him vaccinated from the H1N1, I have my reasons and I will gladly share them with you upon request. I do however have to throw in that when the doctors ask me why I am not getting him vaccinated, I cut them off and ask them if they are getting their kids vaccineized. I then get a pause, and a simple answer of "no" So just think about that for a moment. I guess at the end of all of this
H1N1 scare, we will see who's way was best. Im crossing my fingers and praying a whole lot that it is my way.

We are however, going to take exteame measures, much like last year to keep him safe.
If you come to our house you are sure to find this note taped to our door:


Jonah is a sick little boy
We scrub & scrub & scrub his toys

Protecting him is the key
From respiratory viruses you see

If you are sick please stay away
Go home get well we cannot play

The germs the germs are everywhere
On your clothes and in your hair

We are so glad you stopped on by
But if he gets sick were sure to cry!

We are taking all precautions this respiratory season.
Please feel free to call
Thanks for understanding,

The Andrews Family

TODAY IS A GRAND & GLORIOUS DAY

Today is "A Grand & Glorious Day!" At 3:00pm I received a phone call from a very familiar number. I saw the number reading across the screen of my phone and I resorted back to my magical thinking. Which finger should I use to answer the call with, should I answer or let it go to voicemail??? All of my weird and strange thinking fell to a halt as I answered the phone, "Hi Rick." "Hi there Jessica, I have some news for you-" My heart stopped did I want to know what he was going to say? After all If he told me something I did not want to hear I was ready to call this subject to the medias attention. He continued, "It looks like Dr. Barton (the insurance Doc)read over Jonah's medical history and has approved Jonah for synigis!"

I am elated! I am so happy! I can't believe my persistence has really paid off!

Now what:

So....The insurance has contacted my family doctor and have set up a time when the doses will be shipped to his office. However the first dose will not be available till the first week of November.
I feel like slowly the outer peels of my stress fullness are slowly being peeled away. I might make it through this.

Cross your fingers, he's not sick!

Jonah's eyes are outlined pink. The pinkness is similar to an asthmatic's eyes, post asthma atack. I have noticed signs of sickness with this kid and that is usually my first red flag. I took his temp and it was a cool 98.7 However he has had only consumed 3/4C rice cereal, and 1/2C of yogurt. I had to put all his meds through his feeding tube (usually he will take one or two by mouth)Of course I have been using that feeding tube to keep pushing liquids through, but still I am worried.

Last night Jonah was up from 12:00am till 2:30am screaming for an unknown reason. You would think that today he would sleep a little more, nope.

I am holding him now on my lap as he is helping me type. He feels very clamy, but not like he is running a fever. just really sweaty. I guess I will just have to see what tonight may bring. Im hoping it will bring nothing but zzzzzzz's! For EVERYONE in the house!

Not an Easy Job

I would be lying if I said that being Jonah's mom is an easy job. I find as the days turn to weeks it is getting harder to give %100 percent. That is hard for me to deal with, frustrating really. frustrating because I am in charge of me, and the fact that I am so emotionally exhausted, that some days I just wait for the clock to read a magical number so that I can proclaim it nap time. As some of you may or may not know, Jonah has sensory integration issues which stem from him being either in the hospital on life support or being in the hospital on lots of meds. Because he played the in and out game at the hospital he was not able to make connections that most babies his age would have the opportunity to make. Therefor, Jonah is probably at a 9-12 mo level in physical development. In speech he is probably at a 6-9 mo level. (This is extremely frustrating for Jonah because cognitively he is around 15 mo) But hands down he throws a great tantrum that I personally would rate at about a 3 year old level! Because of all of this combined Jonah has tendencies to bang his head on the floor, cabinets, crib railing, bathtub, and refrigerator. It is a tough scene that I am so tired of watch unfold. His therapist says to put a pillow under his head when he starts banging, but he gets more agitated and throws the pillow and then hits his head even harder. If I pick him up I honestly get headbutted so hard in the chest, chin, nose, and head, that it easily makes tears surface. OUCH! The kid has some power behind his punch!

It seems as he is getting older he is doing this more and more. He usually starts out doing it for "input" but as soon as I put the pillow down or scootch him away from the area he goes into full blown tantrum that is now leaving noticeable bruses on his forhead. Ahh, it really bites! I hate watching him do it for the input, but I know it gets worse if I intervene.

Jonah is now on house arrest. A friend of mine who works at the children's hospital has been so loyal as to inform me what illnesses are coming in and from what part of Utah they are coming from. As of Saturday, she reported that 30 cases of paraflu have been reported coming out of Salt Lake. This is no beuno! Paraflu and Jonah go together like pork roast and a vegetarian. Thsi is the flue that has sent our little man to the hospital on many occations.

It seems as though every time I turn around there is a new virus and a new warning. After a long talk, and weighing pros and con's Isaac and I both decided that perhaps quiting, really quiting working at Learning Tree would be in Jonah's best interest. So I did. Although I was really only working 2-3 hours a week, I could not be there and supseptible to catching or passing on, the virus of the week/month. I feel really good about our decission. I know that means that money will only get tighter, but living without some stuff sure beats the guilt that I may be the REASON why J got sick, and definatley beats living at the hospital!

As a parent I don't think you are ever sure that you are making the right choices for your family. For that reason I do worry. All I can do is try my best today, and hope that is good enough, and if not...thankgoodness for tomorrow!

Funny Things My Jman Did During This Hospitalization

* managed to climb into & fit into every cupboard or cubby hole in his room
* Tried to be super man and fly out of his crib (Dr.caught him...Feww!)
* He now has 2 signs on his door that read 'Falls Risk'
* When painting Jonah has decided it's best to taste each color before using it
* Every time a female nurse comes in to his room Jonah feels the urge to drop his Binky so she will pick it up for him.
* when he talks to daddy on the phone at night, Jonah does 'lalas' for him
* when I say night night, Jonah drop's down and plays dead
* he has mastered at high qualities of speed the booty scootch (other parents are now talking about how fast this kid goes)
* Peed all over mommy and the nurse station desk
* Played the piano for over 20 minutes
* climbs under his crib to play
* Monkey face all the time!
* sneezed 6 times in a row...talk about clearing an air way!
* made up a game that involved stuffing tissues into his mouth (I will post the video one day!)
* crawles over to the table that his vest is on and puts the mask and the puffers to his face immitating the RTs
* Just likes to hold his vest even when it's not on him
* slept with 5 binkies one night. 1 in his mouth, 1 in each hand, and two tucked away in his neck rolls

CT Results Are In!

The lab finally got their stuff together and sent report on Jonahs CT:

The Bronchiectasis seen in the lower lobesis moderate in degree and involves the lower lobes diffusely. There is also some Bronchiectasis seen in the right upper lobe. This Bronchiectasis is present on both studies and is not appear to have significant change. Scattered areas of atelectasis are seen in both lungs.

Over all I am happy with this report. I am so glad that it does not look any worse then when we had the first CT in May. it gives me good faith that all of these meds are actually benefiting Jonah. I know he is a very blessed little boy!

The Count Down Begins

The wonderful dr. Pfeffer came in today around noon. She listened to our little man and was impressed that he sounded so good. This is exciting to hear! This means that these long days of hospital life are paying off. He is responding quite well to his clean out. Today marks day number 9. I was in great hopes that Jonah would be able to come home tomorrow. I could tell by her face she wasn't sure that it was going to happen tomorrow. Instead she gave me a date of Tuesday after his Pm antibiotic dose. It was a comprimised decission and I totally agree with her. As much as I want Jman home I want him to be home & healthy! So it will be a total of 12 days. That is a perfect amount of time for those antibiotics to do their job.

my inspirational thought

I have made the drive up to the hospital more times then I can even count. A total of 15.2 miles to be exact. I share a lot of memories with this freeway. A beautiful freeway I might add. Though I might get sick of the drive I will never get sick of the beautiful scenery. The drive allows me to just think. I think about lots of stuff mostly stuff that pertains to Jonah since he is the reason I do the drive. Some times I catch myself thinking of the past. The fears I had. The strengths I lacked.

As I drove home last night I was able to see the mountains dusted with white snow. I felt an impression to pull over and so I did. I pulled over for a minute and looked up at those beautiful mountains and a thought came to mind. I have climbed a mountain. I have hit Turin that I have lived through I have hit lakes that I buit bridges over. I have climbed a mountain. As I sat there with tears running down my face, I gave thanks to the Lord. For if it were not for him I would have given up long ago. I now realize how much I have grown as a person. I realize that now I am capable of doing more and being more. I know that God has helped me not move the mountain but climb it.



Though I am not at the top of the mountain yet, I can see the top. As I get closer to the peak I can see that there does not lay a box with a magical cure for Jonah so that this chapter in our lives could be closed, rather there is a promise of hope, support, understanding, patient's and unconditional love towards myself and my family. Though this is not what I wanted this is what I got. Every day when I wake up I know I have a choice. I am so lucky to have close friends and wonderful family who remind me that I am making the best choice for that day.