So Jonah is sick once again. He has been since last week. I called the doctor Monday, after Jonahs sats were droping into the 80's. His work of breathing was increasing and I started to kind of freak out. I was having flashbacks of how this usually ends up... in the ER!
Jonahs doctor told me to start him back on steroids (pred) so I did, this time welcoming the stuff. Anything to keep him out of the hospital. I set up a time on Thursday to have her check him and listen to him. She decided to scratch oour previus plan and have him admitted in a couple weeks. Bummer. Her reasoning was that Jonah has been placed on steroids 2x since he was weaned off. She is concerned that he has needed them and we have not even hit respiratory season yet. She is a great doctor so I will try not to second guess her. It is just so hard for us as a family to have Jonah admitted. Though we have done this enough to have a fine scahedual, it is a very stressful time.
Sep 5, 2009
Aug 29, 2009
Bye Bye Binky!
Morgan said good by to her best friend of 3 years. Bye bye Binky! We had a small good bye party for the occasion. My friend's son (who is a year younger) said good bye to his Binky's so the pressure was on. I asked Morgan if she wanted to go up to the hospital and give her Bink's to the babies. There was a slight pause then she asked me if she could just give the Binky's to the astronauts. Isaac and I looked at each other and kind of laughed. Then it hit me hey, yeah we could. We would just tie the Bink's to the end of balloons. viala! It worked. So today was the day... We walked across the street and let go of 6 balloons. When the balloons left the ground Morgan fell into complete hysterics! I wasn't sure how she was going to react, but I am not surprised that this was the result. After a little walk and a run through an empty parking lot with flying grasshoppers, she seemed to be much better. The astronaut cake that was waiting for her when she got home helped too.
I put Morgan to bed about 20 minutes ago and she has not cried yet. This is a good sign. I know she can do this. However I am warning everyone DO NOT BRING UP HER BINK'S....EVER!!! Thank you. And to moms all across the world...Don't wait till they're 3.5 before taking the Bink away. It is so hard and too much work!
Aug 24, 2009
And the Beat Goes On
I feel so good today. I have noticed that I go through cycles, most days I am forced to put on a happy face and I go through the motions of the day but still can't help but watch the clock and wait for it to be bed time. For bed time means I can sit on the couch or in front of the computer and disappear into la la land...sad...pathetic...not who I want to be. Being locked up in the house while Morgan had chicken pox has been rougher then I would have thought. I think that has a lot to do with my "Frumpy" self.
Today has been different. First off I feel so refreshed. Isaac has been so wonderful about getting up with Jonah through the night for the past week. It is so amazing to be a ble to wake up in the morning and have to ask your self if you really slept through the whole night. The second thing that goes through my head is to check on Jonah to make sure he's still breathing. Anyways I am getting geared up to start my September.
So much is going on this September, so many changes in our lives. I will be going back to school on Wednesday. Well kinda... It's over the Internet this semester, but still I am looking forward to it. I had big plans to this last summer but it never happened. Wednesday is the big day. I will be majoring in Family & child studies in hope to become a child life specialist one day.
In other fab news... Jonah had a doctor appointment with his lung doctor and she said he did sound better then he did last month so she will hold off on admitting him if that was okay with me...Well it actually works out nicely if he does not have to go in at all. So she will set up a CT scan in October to see what the lungs are doing. If he has further lung damage compared to the first CT scan she will admit him in October. I guess we will wait and see what happens.
Thank you for your out poor of prayers. I am touched by each and everyone. You wouldn't believe the miracles that we have seen. Good thing I'm writing that book huh?
Today has been different. First off I feel so refreshed. Isaac has been so wonderful about getting up with Jonah through the night for the past week. It is so amazing to be a ble to wake up in the morning and have to ask your self if you really slept through the whole night. The second thing that goes through my head is to check on Jonah to make sure he's still breathing. Anyways I am getting geared up to start my September.
So much is going on this September, so many changes in our lives. I will be going back to school on Wednesday. Well kinda... It's over the Internet this semester, but still I am looking forward to it. I had big plans to this last summer but it never happened. Wednesday is the big day. I will be majoring in Family & child studies in hope to become a child life specialist one day.
In other fab news... Jonah had a doctor appointment with his lung doctor and she said he did sound better then he did last month so she will hold off on admitting him if that was okay with me...Well it actually works out nicely if he does not have to go in at all. So she will set up a CT scan in October to see what the lungs are doing. If he has further lung damage compared to the first CT scan she will admit him in October. I guess we will wait and see what happens.
Thank you for your out poor of prayers. I am touched by each and everyone. You wouldn't believe the miracles that we have seen. Good thing I'm writing that book huh?
Aug 18, 2009
synagis...oh the power you have over me
I have been dealing with so much political crap myself. I am dealing with insurance and its a full time job! I am trying to stay positive and make sure the company that wants to deny my child from getting appropriate vaccinations understands what he has been through. I call Molina health care every Monday so that they remember that I am the one who wont let up! Its super frustrating and yesterday I was told that it's the states decision. That's crap! Perhaps today i will gather all of Jonahs "sick" hooked up on life support pictures and send them to the state. What right does the state have to deny my son of a medication that he needs because he was born at a decent weight? It makes no sense. I constantly remind the person on the other end of the telephone how much money could have been saved this year if he only got the medication last year. I will not give up but I do not support universal health care! I am with Jonah 24/7 I think I know what is best for him. If these people would just listen I am making a lot of sense. This is a sick child who needs to be protected through the respiratory season! The state would rather protect their pocket books. It's sick and it's sad and Im tired of the silly back and forth games that are being played.
our house
So I have started writing my first book. I know, sounds crazy but I have a story to tell and hopefully inspire. Inspire other parents who have to deal with the pain and loss felt while trying to keep the up the home front and become a child's number one caregiver. It's the hardest thing I have ever been asked to do. I look back now and am surprised at my strength and willingness to follow orders...(I'm a little stubborn) I am thankful for the support that friends, family and medical teams have given us. I know Jonah is not healthy, but he is fighting and holding his own pretty well. I often try to put myself in his shoes...Could I endure all of this? He is doing great this week and I am so happy to see him growing in length and in development.
Morgan will be starting the head start program (preschool) the second week of September. She is not to thrilled about it, but I think it will be very good for her. She struggles with trying new things and leaving my side. Yesterday I took her into the doctors to learn she has a few chicken pox. Yes she was immunized but she caught the virus somewhere. Today she has gained another four spots. She does not scratch them, rather avoids them telling me that they hurt her. Poor doll.
Isaac is still working hard to support the family. He is getting bored with his job and most days irritated with the politics of the "new Company" However our flight benefits will start up next month and I am really excited about that!
Aug 9, 2009
Gotta Love A Messy Face
I took this video a few weeks ago,but I was cleaning out my computer and found it. Isaac and I have watched it so many times. It is just amazing how far this boy has come! This clip brings a giant smile to my face...I hope it will bring one to yours!
Aug 8, 2009
A Blog Stalking Story
I just learned some wonderful news. A person who I blogstalk (hehe) Has just recieved her new lungs! I am so happy for her! She too has/had? Bronchiectasis. She has been waiting quite a while, and now finally she has recievced healthy lungs. I am so greatful to her for all of the help she has offered me with educating me on Bronchiectasis, and other crazy lung stuff. She has become one of my biggest sorces and go-tos. I hope that those of you who read this will fully grasp the wonderful blessing that organ donors give. Thank you to that Mystery donor who saved my Bree's life! To read more about Bree and her future updates visit her blog. She is Truly an original person with a sence of humor like no other. The Blog Blog
Aug 7, 2009
APD
What is Auditory Processing Disorder?
Auditory processing disorder (APD), also known as central auditory processing disorder (CAPD), is a complex problem affecting about 5% of children. These kids can't process the information they hear in the same way as others because their ears and brain don't fully coordinate. Something adversely affects the way the brain recognizes and interprets sounds, most notably the sounds composing speech.
Kids with APD often do not recognize subtle differences between sounds in words, even when the sounds are loud and clear enough to be heard. These kinds of problems typically occur in background noise, which is a natural listening environment. So kids with APD have the basic difficulty of understanding any speech signal presented under less than optimal conditions.
Detecting APD
Kids with APD are thought to hear normally because they can usually detect pure tones that are delivered one by one in a very quiet environment (such as a sound-treated room). Those who can normally detect sounds and recognize speech in ideal listening conditions are not considered to have hearing difficulties.
However, the ability to detect the presence of sounds is only one part of the processing that occurs in the auditory system. So, most kids with APD do not have a loss of hearing sensitivity, but have a hearing problem in the sense that they do not process auditory information normally.
If the auditory deficits aren't identified and managed early, many of these kids will have speech and language delays and academic problems.
Symptoms of APD can range from mild to severe and can take many different forms.
Auditory processing disorder (APD), also known as central auditory processing disorder (CAPD), is a complex problem affecting about 5% of children. These kids can't process the information they hear in the same way as others because their ears and brain don't fully coordinate. Something adversely affects the way the brain recognizes and interprets sounds, most notably the sounds composing speech.
Kids with APD often do not recognize subtle differences between sounds in words, even when the sounds are loud and clear enough to be heard. These kinds of problems typically occur in background noise, which is a natural listening environment. So kids with APD have the basic difficulty of understanding any speech signal presented under less than optimal conditions.
Detecting APD
Kids with APD are thought to hear normally because they can usually detect pure tones that are delivered one by one in a very quiet environment (such as a sound-treated room). Those who can normally detect sounds and recognize speech in ideal listening conditions are not considered to have hearing difficulties.
However, the ability to detect the presence of sounds is only one part of the processing that occurs in the auditory system. So, most kids with APD do not have a loss of hearing sensitivity, but have a hearing problem in the sense that they do not process auditory information normally.
If the auditory deficits aren't identified and managed early, many of these kids will have speech and language delays and academic problems.
Symptoms of APD can range from mild to severe and can take many different forms.
Aug 4, 2009
POP! There went my bubble
Its been a rough start to the day. I am suppose to be in my "last month of summer, nothing but fun mode," however that bubble was popped.
First I had a uncomfortable conversation that carried much emotion towards one of my husbands family members.I was in full swing of swollen nose, blood shot eyes, and hurting heart. I got alot off my chest but, perhaps somethings are better left unsaid and unexplained.
Secondly, Jonah had occupational therapy. Two weeks ago,he had an evaluation done that would better help assist him with some delays he was having with his sensory profile.I learned today that The assessment showed that Jonah struggles with auditory processing, and requires more input to be able to process most information. I was asked to try using deep pressure methods and placing head phones on his ears and have him listen to white noise as well as dimming out input in over stimulating environments. I have my work cut out for me;As Jonah will be admitted back into the hospital in September. The hospital is overly over stimulating...even for me!
It is hard for me to see the big picture. It constantly feels like there is always "something" going on with Jonah. It is difficult for me to connect the dots that these are not all independent "disabilities" but they are all, oddly enough,connected to each other. It is just a bit much. Jonah is Jonah. He continues to develop at his own pace and there is nothing I can do to speed it along. As hard as that is for me (the controller, the Virgo) I need to except it, embrace it and learn to deal with it. This may require me to change a lot of my thinking and ways of doing things. I am trying so hard to realize this is not a quick fix illness. This is a life long disease.
On a lighter note we had Isaac's aunt and her family come up and visit with us. They are from Santa Rosa, and making the trek to Colorado where their 15year old son is set to participate in a triathlon. Yes, I said 15! Crazy, I know, he is an amazing kid. I wish him well on his race!
First I had a uncomfortable conversation that carried much emotion towards one of my husbands family members.I was in full swing of swollen nose, blood shot eyes, and hurting heart. I got alot off my chest but, perhaps somethings are better left unsaid and unexplained.
Secondly, Jonah had occupational therapy. Two weeks ago,he had an evaluation done that would better help assist him with some delays he was having with his sensory profile.I learned today that The assessment showed that Jonah struggles with auditory processing, and requires more input to be able to process most information. I was asked to try using deep pressure methods and placing head phones on his ears and have him listen to white noise as well as dimming out input in over stimulating environments. I have my work cut out for me;As Jonah will be admitted back into the hospital in September. The hospital is overly over stimulating...even for me!
It is hard for me to see the big picture. It constantly feels like there is always "something" going on with Jonah. It is difficult for me to connect the dots that these are not all independent "disabilities" but they are all, oddly enough,connected to each other. It is just a bit much. Jonah is Jonah. He continues to develop at his own pace and there is nothing I can do to speed it along. As hard as that is for me (the controller, the Virgo) I need to except it, embrace it and learn to deal with it. This may require me to change a lot of my thinking and ways of doing things. I am trying so hard to realize this is not a quick fix illness. This is a life long disease.
On a lighter note we had Isaac's aunt and her family come up and visit with us. They are from Santa Rosa, and making the trek to Colorado where their 15year old son is set to participate in a triathlon. Yes, I said 15! Crazy, I know, he is an amazing kid. I wish him well on his race!
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