Jun 30, 2009
Jun 29, 2009
this past week in a nut shell blog
We took the kids to my family reunion in South Lake Tahoe. It was a lot of fun and filled with laughs and new memories. We were there from Wednesday to Saturday. A perfect mini vacation! My mom and step dad have a time share there. It is more like a resort so we stayed there for most of the trip. In fact the only time we even saw Lake Tahoe was when we were driving back to Utah... It was a really nice time share. It was so good to see my family and cousins. When ever there are that many woman in one place you can just assume that there will be mild drama. At the end of the day we are one big happy family! I love my family.
Rewind. Last Monday I took J into the doctors and the doctor said he sounded good and that the rash should be ok...remember?? Okay, well on Tuesday morning our home health care nurse came in to see Jonah for a routine check-up. She said that when she listened to him she could hardly here air moving in and out because the wheeze and gunk was so thick. This is how fast this kid can get sick. Against better judgment I took him on the trip. Tahoe has a higher altitude... Jonah suffered. I brought his stuff but the poor guy was wheezing so much! I felt so bad. He has so much snot that we broke out the deep suctioning machine...I hate doing that to him. Now he is sleeping and so far today, no sign of a fever. He has been using more liquids than usual to help keep him hydrated and to prevent extra thick secretions. He will be fine, We have delt with worse! I made an appointment for him to go in and see his pulmonary doctor, it then dawned on me that I never made a follow up appointment after he was discharged...oops! I am loosing it. I need to go and buy a day planner. I don't look at the family calendar enough.
Today was rather exciting thus far. Morgan started swimming lessons. I found a great deal at the rec center. she is signed up for 8 classes. Today being the first lesson she was a little intimidated. It took her a good 10 min of her telling me she was afraid before she went into the water. (people she is not afraid! She is a total fish in the water, I don't quite understand all the dramatics she has been pulling lately.) By the end of the hour she screamed because she didn't want to get out of the pool. Go figure! Anyways she did a great job, and is now taking a nap! She didn't even play or sing first. I closed the door and she closed her eyes. I love days like this. I guess I better go clean up the lunch mess on the floor... I love that the kids are starting to feed themselves but 'cmon...really?? Apple sauce is the hardest to clean off the floor...it sticks to everything!
Jun 22, 2009
the sound of silence (Simon & Garfuncle inspired title)
Ahh! Silence! Both kids are sleeping! Morgan has not fallen asleep for "nap time" in 4 days. She goes in her room and plays, looks at books...and yesterday drew a fathers day picture on the wall for Isaac (I wiped it off b4 he got home). I was beginning to think she was starting to out grow her afternoon naps, false alarm. Today she is sleeping! Jonah does ok during nap time, he just doesn't sleep long enough. Our big issue with him is sleeping through the night. (or lack there of)
Yesterday marked our one week anniversary of Jonah being off steroids. He is doing okay, but has caught a little cold. Accompanying his cold is snot, a cough, some snot, a rash all over his body, more snot, a very cranky kiddo and did I mention the snot? He went into see Dr.P and it was confirmed...he has a lot of snot! But the good news...are you ready?... His lungs sounded good! I will repeat that for those of you who did not get the full effect.
HIS LUNGS SOUNDED GOOD!
Somehow hearing those words make the CPT (30 minutes long, 3x a day) worth it. This is a perfect way to start out a new week....
Yesterday marked our one week anniversary of Jonah being off steroids. He is doing okay, but has caught a little cold. Accompanying his cold is snot, a cough, some snot, a rash all over his body, more snot, a very cranky kiddo and did I mention the snot? He went into see Dr.P and it was confirmed...he has a lot of snot! But the good news...are you ready?... His lungs sounded good! I will repeat that for those of you who did not get the full effect.
HIS LUNGS SOUNDED GOOD!
Somehow hearing those words make the CPT (30 minutes long, 3x a day) worth it. This is a perfect way to start out a new week....
Jun 16, 2009
I tripple dog dare you!
Through all of my Blog stocking I have "met" peoples with Bronchiectasis and or Cystic fibrosis, and there seems to always be one common need... "new lungs."
I have always thought about being an Organ Donor. When Isaac & I were first married we had discussed it and the out come was that we would both be organ donors. Funny thing is, though we agreed to do so we never took any action. This morning I read one blog that really touched my heart. It's about a young teen who suffers with CF. She talks about how her life choices have already been made for her because she is living with this disease, that does have a life expectancy... unless she could have her lung transplant. Today was the day I signed up to be a donor.
The problem: there are too many people on the donor list, and not enough organ donors. In fact, one in four organs that are donated are use able. That is a sad percentage. Unhealthy people (in this case smokers) do not have healthy lungs to give. The recipient would be exchanging one problem for the other.
I am writing this just so you can better educate your selves on the need of organs. If it were your child wouldn't you do anything under the sun for them? I would.
If it came up, that little Jonah needed a lung transplant I would pray my heart out that some one was gracious enough to leave behind the gift of life for him.
Please take the time to educate yourself on this topic. So many young people are dependent on your choice.
I have always thought about being an Organ Donor. When Isaac & I were first married we had discussed it and the out come was that we would both be organ donors. Funny thing is, though we agreed to do so we never took any action. This morning I read one blog that really touched my heart. It's about a young teen who suffers with CF. She talks about how her life choices have already been made for her because she is living with this disease, that does have a life expectancy... unless she could have her lung transplant. Today was the day I signed up to be a donor.
The problem: there are too many people on the donor list, and not enough organ donors. In fact, one in four organs that are donated are use able. That is a sad percentage. Unhealthy people (in this case smokers) do not have healthy lungs to give. The recipient would be exchanging one problem for the other.
I am writing this just so you can better educate your selves on the need of organs. If it were your child wouldn't you do anything under the sun for them? I would.
If it came up, that little Jonah needed a lung transplant I would pray my heart out that some one was gracious enough to leave behind the gift of life for him.
Please take the time to educate yourself on this topic. So many young people are dependent on your choice.
Jun 14, 2009
A DOCUMENTARY
Jonah's last day on steroids... I have documented the last dose for you all to see! Crazy? Maybe (Susie thinks so)...Excited to see it all done with? Very!
A Beautiful Poem --by me
Good bye to you Prednisone
Good bye chubby chubby chubby cheeks
Good bye mood swings
Good bye
Hello to you Azithromycin
Hello to you mucusy cough
Hello daily CPT X3 30 min long
Hello
Welcome Teeth
Welcome Immune system
Welcome movement of all sorts
Welcome, welcome, welcome!
Jun 13, 2009
Jun 11, 2009
Go Teddy Ruxbin Go Go
The CPT vest is up and running...finally! What a treat for my hands!
Yesterday I had the chance to meet up with my great uncle Loyal from Oregon. He drove from San Diego where he picked up my other great uncle Jack. I went to the hotel that they were staying at where my Grandma was as well. What a nice visit we all shared. I have a lot of great memories with my uncle Loyal. Though he is in his 80's he still has the best sense of humor. I hope I will be like that when I'm 80.
On the way home Morgan started to sing a song... she loves to sing...about everything and any thing! The song is from one of her favorite shows: YO! Gabba Gabba! So on the show a child will state their name and and dance... then other voices come on and say Go blah blah... you get it? So Morgan says " My name is Morgan, and I like to dance." Then she starts singing the other part... "Go Morgan go Morgan go Morgan", the funny part, well then she throws in "Go Teddy Ruxbin Go Teddy Ruxbin GO Go Go" (Teddy Ruxbin was sitting on her lap) I had to laugh...and share it with you.
Yesterday I had the chance to meet up with my great uncle Loyal from Oregon. He drove from San Diego where he picked up my other great uncle Jack. I went to the hotel that they were staying at where my Grandma was as well. What a nice visit we all shared. I have a lot of great memories with my uncle Loyal. Though he is in his 80's he still has the best sense of humor. I hope I will be like that when I'm 80.
On the way home Morgan started to sing a song... she loves to sing...about everything and any thing! The song is from one of her favorite shows: YO! Gabba Gabba! So on the show a child will state their name and and dance... then other voices come on and say Go blah blah... you get it? So Morgan says " My name is Morgan, and I like to dance." Then she starts singing the other part... "Go Morgan go Morgan go Morgan", the funny part, well then she throws in "Go Teddy Ruxbin Go Teddy Ruxbin GO Go Go" (Teddy Ruxbin was sitting on her lap) I had to laugh...and share it with you.
Jun 8, 2009
It came!
Yay! Jonah's CPT Vest came today!! Though I am very excited that it has arrived...I don't know how to use it. I got a phone call from a gal named Chris (she is a Respiratory Therapist)who will be dropping by on Thursday to set it up and teach me. so until then where do I store it? Who am I kidding, this house could use more shelf space. (j/k) Just a few more days doing manual CPT, then the big guns come out. That's sooo doable.
Jun 3, 2009
My name is Jessica and I'm a blogstalker...
I have become an official blog stalker! As I'm sure most of you know I am obsessed with google and for the past several weeks since Jonah's diagnosis, I have been googling the hell out of Bronchiectasis. Yesterday I decided to type in Bronchiectasis blog... Just to see if people talk about it since it seems to be a foreign topic here in Utah. Guess what people are talking about it on their blogs. I am thrilled to have found this. Why? Well, since his diagnosis I have learned the basics. Like what it is, how its caused, how to maintain it. But I want to know how does this disease affect your life overall. What is Jonah's life going to Intel, can he play sports? Will he always be on O2? Will it progress even with maintenance? And will he end up needing a lung transplant? Just the stuff that would keep a hand wringer mom like myself, up for hours on end. I hope that by reading and learning about other peoples struggles/inconvenience with this disease will help educate and prepare our family for the future. When I bring up my concerns I get the typical doctor answer "only time will tell, we will just see how he does." well for a planner, this is a hard pill to swallow. I want to know now. Does anyone have a crystal ball?.........Any one??...........Any one???
Jun 2, 2009
six months in
It's been a long six months from the day I sat down and wrote out my 2009 new years resolutions. Today being the 2 of June, It's time reevaluate where I am with those.
#1 goal was to have more family time- doing great with that one! Since we are home a good portion of the time we have spent a lot of good quality time together... so much that mommy/wifey is ready to have alone time :)
#2 goal was of course to loose some weight- Well... that has been a challenge. I have gone up and down in numbers for the last six months,but I am still lighter then I was on Jan 1 2009! A fun game has begun with my family. We have paid $25 each into a pot and we are all trying to win! The game rules: June 1-Oct 1. Do what ever you want to loose the weight. Winner- greatest percentage of weight loss. It is based on trust since we are all over the map. I will keep you posted. Isaac is the only male in the contest...We really want to win $$$
# 3 goal was to run a 1/2 marathon- I started out working really hard at building up endurance to run this. By Feb, well lets just go back and look at goal #2... you get it.
#4 goal was to keep a journal.-I consider my blog to be a journal. A place where I can be open and honest. Where I can write what ever it is that I want to write about. I have been printing off my blog and putting it away so that one day when kids are grown... and healthier, they can read the real story about how their crazy mom became the crazy mom.
So now looking at the goals I will tweak them a little bit more so that I can succeed in fulfilling all four of my new years resolutions. P.S. If you see me eating something that is a no-no, you have the right to flick me in the head. But do it soft I am a wuss!
#1 goal was to have more family time- doing great with that one! Since we are home a good portion of the time we have spent a lot of good quality time together... so much that mommy/wifey is ready to have alone time :)
#2 goal was of course to loose some weight- Well... that has been a challenge. I have gone up and down in numbers for the last six months,but I am still lighter then I was on Jan 1 2009! A fun game has begun with my family. We have paid $25 each into a pot and we are all trying to win! The game rules: June 1-Oct 1. Do what ever you want to loose the weight. Winner- greatest percentage of weight loss. It is based on trust since we are all over the map. I will keep you posted. Isaac is the only male in the contest...We really want to win $$$
# 3 goal was to run a 1/2 marathon- I started out working really hard at building up endurance to run this. By Feb, well lets just go back and look at goal #2... you get it.
#4 goal was to keep a journal.-I consider my blog to be a journal. A place where I can be open and honest. Where I can write what ever it is that I want to write about. I have been printing off my blog and putting it away so that one day when kids are grown... and healthier, they can read the real story about how their crazy mom became the crazy mom.
So now looking at the goals I will tweak them a little bit more so that I can succeed in fulfilling all four of my new years resolutions. P.S. If you see me eating something that is a no-no, you have the right to flick me in the head. But do it soft I am a wuss!
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