Feb 26, 2011
Why
I started bloging to meet up with other families who face the same trials and heart breaks of having a child with special needs. i have met some pretty amazing people who have turned into pretty amazing friends, but all of this has it's let downs and heart breaks as well. Too many children in my blogging community are dying. It's not fair! These kids are some of the most amazing children you will ever meet! Take a moment to get to know the worlds newest angel; Maggie.
Feb 25, 2011
Raise the Roof
Money.
I hate the "M" word.
Unless I'm rolling in it,
which has only been once
and I was only rolling in pennies.
We need a new roof.
It is not leaking...yet
but non the less we need a new roof.
I have been collecting bids since last Feb.
We decided to just bite the bullet and do it
(since Ty Pennington has not showed up).
Why are roofs so expensive?
Why are there so many colors to choose from,
yet they all look the same?
I hate the "M" word.
Unless I'm rolling in it,
which has only been once
and I was only rolling in pennies.
We need a new roof.
It is not leaking...yet
but non the less we need a new roof.
I have been collecting bids since last Feb.
We decided to just bite the bullet and do it
(since Ty Pennington has not showed up).
Why are there so many colors to choose from,
yet they all look the same?
Feb 23, 2011
appointment with the pulmonologist
Jonah had a follow up appointment with regards to his RSV that he caught a week and a half ago. Today his follow up was with his pulmonologist. I went into the appointment with lot's on my mind and very little of it had to do with the RSV. He was the doctor's last appointment for the day so I got lot's of time to discuss random worries that I carry daily in my heart and in my head. When we left the appointment I felt like I could think with a clear head instead of the brain I have been using for the past year. Most of my questions were answered. Some answers I knew, but didn't want to face, but I got answers to questions that have been keeping me up at night. I feel good. Great doctors are hard to find...I feel so lucky that the one I found for Jonah really cares about him and she let's it be known. As a mama, this means the world to me. I wish all his doctors, therapists and teachers were sucked into the charm of Jonah.
Jonah will be admitted again in March (per my request) for his quarterly clean out. During his clean out he will receive IV antibiotics once again thru a PICC line. If there are no veins available (which is what I am assuming will be the problem from the history of his November PICC placement) he will have a central line placed. He will continue to have his vest treatments and inhaled meds like at home only with people who keep him laughing and entertained.
Jonah will be admitted again in March (per my request) for his quarterly clean out. During his clean out he will receive IV antibiotics once again thru a PICC line. If there are no veins available (which is what I am assuming will be the problem from the history of his November PICC placement) he will have a central line placed. He will continue to have his vest treatments and inhaled meds like at home only with people who keep him laughing and entertained.
Feb 22, 2011
Sick Boy
Friday, February 18, 2011
***Oops! This post was posted on another blog I write by accident... I was wondering where it went!
Could you imagine breathing through one of those little red coffee straws?? That's how much air Jonah gets with each breath when his air way becomes constricted. He has been super wheezy and no amount of albuterol is taking it away. He has had so much today that I think he got buzzed a couple times as his heart was beating fast and he had many bursts of energy which landed him is a daze by the time his heart regulated. I am hoping that he is on the upswing, but I have been hoping this since the day we learned that he had RSV.
It's sad to watch him playing hard when I know that it is wearing him out, but I have read in many articles that it is important for those who have lung issues to be active as it moves secretions. Speaking of secretions, I am so proud of my boy as he is really starting to understand that he needs to cough then spit. (No I don't allow spitting in any other circumstances, but if you have a kiddo with lung disease you understand) He has been having a hard time sleeping so I did start him back up on his sleeping meds and even with that he is still waking in the night.
I hope Jonah will feel better soon. It is sad to have a sick baby, even though I adore all the cuddle time I can get!
***Oops! This post was posted on another blog I write by accident... I was wondering where it went!
Could you imagine breathing through one of those little red coffee straws?? That's how much air Jonah gets with each breath when his air way becomes constricted. He has been super wheezy and no amount of albuterol is taking it away. He has had so much today that I think he got buzzed a couple times as his heart was beating fast and he had many bursts of energy which landed him is a daze by the time his heart regulated. I am hoping that he is on the upswing, but I have been hoping this since the day we learned that he had RSV.
It's sad to watch him playing hard when I know that it is wearing him out, but I have read in many articles that it is important for those who have lung issues to be active as it moves secretions. Speaking of secretions, I am so proud of my boy as he is really starting to understand that he needs to cough then spit. (No I don't allow spitting in any other circumstances, but if you have a kiddo with lung disease you understand) He has been having a hard time sleeping so I did start him back up on his sleeping meds and even with that he is still waking in the night.
I hope Jonah will feel better soon. It is sad to have a sick baby, even though I adore all the cuddle time I can get!
Feb 15, 2011
Today has been wonderful. I got great sleep last night, started a cleanse and have had bountiful amounts of energy! The kids and I even snuck out to the park this morning to kick around the soccer ball and let the dog run around.
Today has been Jonah's roughest day so far. He has had at least 5 of his "Mega meltdowns" and has been full of snot, that I unfortunately cannot suction out. Last night I ran over to the pulmo's office and picked up a prescription for the suction clinic at the hospital We have a suction machine at home but I can't fight him and suction at the same time. I need some assistance and when Isaac is at work I have no one to help hold Jonah down. Now that we have the script I can take him when ever for the next 10 days. He is up to a full liter of oxygen tonight and his work of breathing is increasing. I will keep tabs every four hours and hope that he will be able to make it here at home. His energy levels have remained normal and I think this is really helping him.
Today has been Jonah's roughest day so far. He has had at least 5 of his "Mega meltdowns" and has been full of snot, that I unfortunately cannot suction out. Last night I ran over to the pulmo's office and picked up a prescription for the suction clinic at the hospital We have a suction machine at home but I can't fight him and suction at the same time. I need some assistance and when Isaac is at work I have no one to help hold Jonah down. Now that we have the script I can take him when ever for the next 10 days. He is up to a full liter of oxygen tonight and his work of breathing is increasing. I will keep tabs every four hours and hope that he will be able to make it here at home. His energy levels have remained normal and I think this is really helping him.
Feb 13, 2011
Sunday Morning
New background! Do you love? I do!!! It's so circus like...kinda like my life. (hehe) Mr. Jonah is having a great morning! I am feeling a bit more confident today then I was yesterday. Hopefully he will continue to improve. Though we have not hit the peak of RSV, I will stand in high hopes!
Life is normal in the Andrews house hold this morning. Morgan wanting to do everything by herself, pouring milk, brushing hair, reading my Psych text book...yeah. Jonah, like I said seems to be in a better mood today as well. He is back to his antics of teasing Morgan and pulling the dog to where ever he goes. The problem: (well besides pulling the dogs tail) He refuses to wear his oxygen cannula if their is a higher flow of oxygen pushing thru. This is not good. I sneak in his room at night to boost it up and he wakes and flips out. I think it bothers him because it's cool air. Hmmm, this will be a difficult one to tackle.
Life is normal in the Andrews house hold this morning. Morgan wanting to do everything by herself, pouring milk, brushing hair, reading my Psych text book...yeah. Jonah, like I said seems to be in a better mood today as well. He is back to his antics of teasing Morgan and pulling the dog to where ever he goes. The problem: (well besides pulling the dogs tail) He refuses to wear his oxygen cannula if their is a higher flow of oxygen pushing thru. This is not good. I sneak in his room at night to boost it up and he wakes and flips out. I think it bothers him because it's cool air. Hmmm, this will be a difficult one to tackle.
No one at home has caught the yucky RSV yet! I hope it stays like that!
Feb 12, 2011
RSV 2011
Having a Jonah as your child is exhausting! The roller coaster ride is only fun when we are going down the slope with your arms in the air. My coping mechanism has always been to move on and believe that he is all better now. It gets me every time. Silly, I know. I should be way over the denial stage by now but after every hit he takes, I think that it is the last one and really honestly I believe it...until he gets sick again. Then I wonder how this is all happening...well duh! He has lung disease!
Jonah has been doing so good. He has been a crazy man doing crazy Jonah things... (his new thing getting inside the fridge and trying to close the door on him self so he can see the light go off and opening the refrigerator at our house and any one elses house. He is a curious boy, and wants to know what you are eating, if he likes what he sees he will help himself.)
Right now he is coughing. He takes a good breath in between and continues to cough. This goes on for as long as 20 minutes at a time. Then it stops, only to start back up again. I can see that he is getting weaker. Yesterday before the cough, I took him into see his ped, I wasn't sure what exactly was wrong but I knew something was going on because I know him and he was acting odd. I just wasn't' expecting for the dr to tell me that he tested positive for RSV.
I HATE RSV! (I might make this a bumper sticker) RSV is why Jonah has compromised lungs...Okay it's not why, but it's how it started. Jonah had RSV last year as well but he was protected by the Synagis shots that I fought so hard for him to have and because he had that in his system it helped him fight it off as it was a much weaker strain. I can tell by the way he is breathing and coughing this is going to be a long fight for him. I hope that he will be able to conquer it here at home. We started a huge dose of steroids yesterday and he will continue on them for the next week and a half. I am holding so much hope in that the prednisone, extra neb treatments and the CPT 4 times a day will do the trick. I am having no such luck deep suctioning him as he turns his head, holds his breath (turning grey) and fights me with kicks, pinches, bites and his favorite scratches me. I can only use the deep suction machine if Isaac is home so he can hold J's hands down. No matter how he see's it we are MEAN! Breaks my heart.
I believe we are in day number 2 as he was fine up till Thursday, just before midnight. I talked to my friend who said RSV peaks around day 5-7 that gives me the cramping feeling in my stomach. though he has only gone up a half liter so far. I'm asking for prayers and positive thoughts sent his way. I know I ask alot, but only because I know you love him! How could you not?
Jonah has been doing so good. He has been a crazy man doing crazy Jonah things... (his new thing getting inside the fridge and trying to close the door on him self so he can see the light go off and opening the refrigerator at our house and any one elses house. He is a curious boy, and wants to know what you are eating, if he likes what he sees he will help himself.)
Right now he is coughing. He takes a good breath in between and continues to cough. This goes on for as long as 20 minutes at a time. Then it stops, only to start back up again. I can see that he is getting weaker. Yesterday before the cough, I took him into see his ped, I wasn't sure what exactly was wrong but I knew something was going on because I know him and he was acting odd. I just wasn't' expecting for the dr to tell me that he tested positive for RSV.
I HATE RSV! (I might make this a bumper sticker) RSV is why Jonah has compromised lungs...Okay it's not why, but it's how it started. Jonah had RSV last year as well but he was protected by the Synagis shots that I fought so hard for him to have and because he had that in his system it helped him fight it off as it was a much weaker strain. I can tell by the way he is breathing and coughing this is going to be a long fight for him. I hope that he will be able to conquer it here at home. We started a huge dose of steroids yesterday and he will continue on them for the next week and a half. I am holding so much hope in that the prednisone, extra neb treatments and the CPT 4 times a day will do the trick. I am having no such luck deep suctioning him as he turns his head, holds his breath (turning grey) and fights me with kicks, pinches, bites and his favorite scratches me. I can only use the deep suction machine if Isaac is home so he can hold J's hands down. No matter how he see's it we are MEAN! Breaks my heart.
I believe we are in day number 2 as he was fine up till Thursday, just before midnight. I talked to my friend who said RSV peaks around day 5-7 that gives me the cramping feeling in my stomach. though he has only gone up a half liter so far. I'm asking for prayers and positive thoughts sent his way. I know I ask alot, but only because I know you love him! How could you not?
Feb 8, 2011
A normal child at an autistic school
I'm feeling bummed out today. I hate feeling like this. I am a believer that we make our own happiness, but today I just don't have the energy to pretend like all is hunky dory.
Today was my day to work in Jonah's class room up at the Pingree school (room mom). He is doing so well working with his teachers and speech therapist. I love to watch him "work" and to just observe how he is in an environment that is so different then our home. I look at him and get lost in his world, how he is so fascinated with the simple things like buttons, light switches and the wheels on the bottom of his match car. In his class room with his peers he has become a normal child.
A normal child at an autistic school.
Because I was at his school naturally I picked him up. We had a good hour and a half before Morgan was out of her school so I took Jonah over to my grandma's house for a short visit. My grandma's friend was over with her grandson who turned 3 in December. I watched him play appropriately with toys that my kids had left. He asked me some questions and informed me on how his potty training was going. He looked like a 3 year old, he talked like a 3 year old, he was going pee pee on the potty like a 3 year old. I couldn't help but for a moment feel sorry for Jonah, My Jonah who was more interested in rubbing his face on the micro fiber couch then to play with another child.
I had to question it... Do I feel sorry for Jonah or embarrassed for me?
Today was my day to work in Jonah's class room up at the Pingree school (room mom). He is doing so well working with his teachers and speech therapist. I love to watch him "work" and to just observe how he is in an environment that is so different then our home. I look at him and get lost in his world, how he is so fascinated with the simple things like buttons, light switches and the wheels on the bottom of his match car. In his class room with his peers he has become a normal child.
A normal child at an autistic school.
Because I was at his school naturally I picked him up. We had a good hour and a half before Morgan was out of her school so I took Jonah over to my grandma's house for a short visit. My grandma's friend was over with her grandson who turned 3 in December. I watched him play appropriately with toys that my kids had left. He asked me some questions and informed me on how his potty training was going. He looked like a 3 year old, he talked like a 3 year old, he was going pee pee on the potty like a 3 year old. I couldn't help but for a moment feel sorry for Jonah, My Jonah who was more interested in rubbing his face on the micro fiber couch then to play with another child.
I had to question it... Do I feel sorry for Jonah or embarrassed for me?
Feb 5, 2011
My Crazy kids, My Crazy Life.
My life has been crazy busy for the last few weeks that my blogging powers have basically diminished. No excuses.
Jonah and Morgan have been out of school this past week and I'm so ready for them to return as together they become a monster! A very scary monster! They are either fighting, playing or most common...causing trouble! Everyday this week has been a new adventure in the play "how can we drive mommy crazy"
But, I got pay back as Morgan had a cavity :( that she had to have filled.
Jonah and Morgan have been out of school this past week and I'm so ready for them to return as together they become a monster! A very scary monster! They are either fighting, playing or most common...causing trouble! Everyday this week has been a new adventure in the play "how can we drive mommy crazy"
But, I got pay back as Morgan had a cavity :( that she had to have filled.
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