Jonah is back in the hospital. I took him up this morning after a really long night at home. Jonah was struggling yesterday and we took him into the pulmo Dr and she had us take him over to the new PCMC building in Riverton to get a chest x-ray. The x-ray showed that Jonah was trapping air with every exhale, but taking in good air. The problem: If he is taking in more air then he is exhaling he starts to build up CO2 levels and that's never good.
I thought I could handle this all by my self at home, but by 6:00pm I was regretting my decision as I could hear grunts and see him retracting in all places you could retract. Not good! So 7 this morning, Morgan, Jonah and I drove up to the hospital to have him admitted.
It is a HUGE inconvenience to have him up here, but this is where I feel he needs to be. I'm not sue how long the stay will be, as nothing has changed from this morning till now. Tomorrow he will have his 5th picc line placed in his upper left arm, this way he will not have to have his hands or feet irritated by the IV's. He has already pulled out one IV! He's trouble I tell you, yet no one ever believes me when I say that!
While he is under sedation for his PICC line they will also perform an Echo cardiogram to check on his heart. He has never had heart problems, nor do I think the doc's think he does now, I think it's just one of those things they want to check just to rule out. Though they are concerned about the amount of oxygen he is on.
I will up date more when more news comes my way. I'm hoping tomorrow will be turn around day!
Nov 11, 2010
Nov 7, 2010
Jonah's 3!
Happy birthday to my beautiful boy.
Three years ago today I was sick. Really sick. I could not stop coughing! I did go to work though. I worked a normal 10 hr day and then went home to relax and take a hot shower to help relieve some tightness in my chest. I got out but kept coughing. Every time I coughed I would feel my stomach get hard. (braxton hicks) I decided to drive my self up to the hospital and just have them check me out to make sure my coughing wasn't causing any distress on baby. I Isaac stayed home with baby number one; Morgan.
Baby Jonah was having some issues in utero.
I was checked into the woman's pavilion and my midwife was called. I was a bit upset that they wanted me to get into a robe. I then was more irritated when they asked me to stay the night for observation. I was furious when they told me that if the baby was still feeling distress by morning I was going to be induced!
All I wanted was to have this baby with NO DRUGS and strictly HYPNO-BIRTHING! I spent a lot of dough to learn this method and had such a hard labor with Morgan that I got an epidural! I had gone over my birthing plan countless times with my midwife and I was only in the first stages and they were already giving me pitocin!
After a long 11 hours on pitocin and with no other drugs but very painful contractions it was time to face my worst fear ever... A C-Section! I was so scared. I walked into the OR having to stop every few seconds to breath out a contraction and then move another few feet to stop and repeat. I was lifted onto the table and the real fun began.
The anesthesiologist was getting frustrated that I kept moving while he was trying to prep me for the c section. ~ Listen, It is hard to curl your back like a cat when you have been on a high dose of pitocin with no pain drugs and having extreme contractions! When he numbed me I was numb! I could not even cough, even though I had to. I could barely whisper. All I remember is the Dr and my midwife saying out loud that Jonah was a peanut. At that state of mind I was picturing a deformed head and a little tiny curved body...Like a peanut. A friend handed me my baby. I just looked at his perfect body and could feel tears rolling down my cheek as I still could hardly move. I was in love. In that moment I knew I had a special baby.
Jonah Hebrew for Dove.
Nov 5, 2010
poor guy
Yesterday afternoon I got a call from Jonah's teacher. She was worried that he was wheezing so much and had to give him 2 treatments with in the first 2 hours of him being at school. I offered to come and pick him up, but she thought he was sounding a bit better. I know Jonah and I know he can either get sick very fast or just tease us with a cough here and a wheeze there.
When I got him off the bus I took him home and hooked him up to his sat moniter. (he has been doing great this week that I have only been using oxygen on him in the night) He was sating at a low 84-85. Oh my gosh. I feel so guilty!!! Who knows how long his sats had been that low as I didn't even check his sats in the morning because of all the excitment of what yesterday morning brought us. Ugh, I really do just feel sick about neglecting to check before I had him off of his oxygen for so long.
Today he has been running a low grade temp, but the tylenol brings it back down to 99.2, I called his pulmo and she will call in an antibiotic. He has been sleeping most of today, and I am just going to let him be. If we are up all night with a wild child at least we know he's better! I am just bummed because tomorrow is his first real party! Luckily it is only an hour long, as we didnt want to over stimulate him with to much at once. But, this is exactly why we have not ever done a party for Jonah. He is ALWAYS sick!
When I got him off the bus I took him home and hooked him up to his sat moniter. (he has been doing great this week that I have only been using oxygen on him in the night) He was sating at a low 84-85. Oh my gosh. I feel so guilty!!! Who knows how long his sats had been that low as I didn't even check his sats in the morning because of all the excitment of what yesterday morning brought us. Ugh, I really do just feel sick about neglecting to check before I had him off of his oxygen for so long.
Today he has been running a low grade temp, but the tylenol brings it back down to 99.2, I called his pulmo and she will call in an antibiotic. He has been sleeping most of today, and I am just going to let him be. If we are up all night with a wild child at least we know he's better! I am just bummed because tomorrow is his first real party! Luckily it is only an hour long, as we didnt want to over stimulate him with to much at once. But, this is exactly why we have not ever done a party for Jonah. He is ALWAYS sick!
Nov 4, 2010
Ode to Sarah the OT
This is my Ode to "the-wa" as Jonah would say. Today we said good bye to Jonah's Occupational therapist, Sarah. It has been so hard, as I knew this day was approaching, it seems as though I skipped a few days in the week and now the day has come and we have said our good byes.
Good bye's suck! I hate good bye's.
I feel like I just got divorced from Jonah's 3rd parent.
Though we have found a new OT, it difficult to trade one for the other, as Sarah has worked with Jonah for a couple years and knows him well. Sarah is so excepting to his flaws as well as mine. She has taught me so much and has given me much hope pertaining to Jonah's future. She has watched him meet HUGE milestones developmentally, milestones that others may just shrug off as a whoopie, she has cheered and celebrated.
Every morning while dressing Jonah, he peeks out his bed room window looking, asking, The-wa? The-wa? I have finally got him to understand that Sara doesn't come everyday, and now she doesn't come at all. I feel bad that Jonah can't grasp that thought. So he will continue to ask for "The-wa" until one day he just forgets. sad.
Jonah is turning 3 on Sunday and so he looses his early intervention. Early Intervention was where we met Sarah. Although Isaac and I will pay out of pocket for Jonah to continue to do a therapy play group through early intervention, he no longer qualifies for an OT through them.
Because it was our last session with Sarah, we showered her with love and thank yous. Sarah is amazing and any child who gets the opportunity to work with her will fall in love with her, just as Jonah has.
I dislike change so much. I'm trying to not be sad, but it is sad. we are loosing a person who is so important to our son. How can I not shed a few tears?
Good bye's suck! I hate good bye's.
I feel like I just got divorced from Jonah's 3rd parent.
Though we have found a new OT, it difficult to trade one for the other, as Sarah has worked with Jonah for a couple years and knows him well. Sarah is so excepting to his flaws as well as mine. She has taught me so much and has given me much hope pertaining to Jonah's future. She has watched him meet HUGE milestones developmentally, milestones that others may just shrug off as a whoopie, she has cheered and celebrated.
Every morning while dressing Jonah, he peeks out his bed room window looking, asking, The-wa? The-wa? I have finally got him to understand that Sara doesn't come everyday, and now she doesn't come at all. I feel bad that Jonah can't grasp that thought. So he will continue to ask for "The-wa" until one day he just forgets. sad.
Jonah is turning 3 on Sunday and so he looses his early intervention. Early Intervention was where we met Sarah. Although Isaac and I will pay out of pocket for Jonah to continue to do a therapy play group through early intervention, he no longer qualifies for an OT through them.
Because it was our last session with Sarah, we showered her with love and thank yous. Sarah is amazing and any child who gets the opportunity to work with her will fall in love with her, just as Jonah has.
I dislike change so much. I'm trying to not be sad, but it is sad. we are loosing a person who is so important to our son. How can I not shed a few tears?
Oct 29, 2010
yes, really!
I know I've got to get a decent post out since it's been a while...But this is all I can do for now as us Utahns are celebrating Halloween tomorrow night! Yesterday just before dinner Jonah fell off our trampoline face first. It was sad, he cried, I cried, Isaac wiped away tears...well, not mine. It looked bad but not bad enough to have him seen.
I went to check on him around 9:30pm and Isaac examined his owie. Isaac was surprised to press down on his goose egg and find his finger sink into Jonah's forehead. I was disgusted and immediately I began to gear up for a long night! After taking pols over the phone from friends who are nurses, I finally took J to instacare, then St. Marks, and finally ended up at Primary Children's, where I should have just gone in the first place...(No one ever is equipped for this kid!) We then went through all the hoopla and were finally able to go home in the wee hours of the morning. I'm so tired I can't even type out details. They were concerned that he had cracked his skull, by the way the fluid was surrounding the forehead. Now we just have to keep a close eye on it to make sure that the fluid hardens up to form a goose egg and we need to check his eyes frequently.
Yes, just another normal day being Jonah's mommy.
I went to check on him around 9:30pm and Isaac examined his owie. Isaac was surprised to press down on his goose egg and find his finger sink into Jonah's forehead. I was disgusted and immediately I began to gear up for a long night! After taking pols over the phone from friends who are nurses, I finally took J to instacare, then St. Marks, and finally ended up at Primary Children's, where I should have just gone in the first place...(No one ever is equipped for this kid!) We then went through all the hoopla and were finally able to go home in the wee hours of the morning. I'm so tired I can't even type out details. They were concerned that he had cracked his skull, by the way the fluid was surrounding the forehead. Now we just have to keep a close eye on it to make sure that the fluid hardens up to form a goose egg and we need to check his eyes frequently.
Yes, just another normal day being Jonah's mommy.
Oct 19, 2010
Jonah's first day of school
Today Jonah went to his first day of preschool...
He did well, no crying, just withdrawals from his BINK!
As soon as he saw me that's the fist thing he signed for!
Cute pics of the first day at Pingree, school for the Autistic....
He did well, no crying, just withdrawals from his BINK!
As soon as he saw me that's the fist thing he signed for!
Cute pics of the first day at Pingree, school for the Autistic....
Oct 18, 2010
at this point I just expect things like this
At this very moment, I am sitting on the edge of the couch typing on my laptop, Morgan sitting on the couch watching signing time and eating a frozen GF/CF cookie (a new recipe her and I tried out last night) and my sweet Jonah is holding his cookie in one hand and hitting his head against the giant front window. I am clenching my teeth.
Usually I would correct this behavior as it gets under my skin so fast! Instead I am fighting myself and just going to sit pretty, typing on my Blog.
This morning we went to our first Occupational Therapy appointment through the children's hospital. We are having BIG changes in our lives with Jonah being exited from early Intervention (he will soon be 3) I am now rearranging his entire world and I know it's hard for him. New therapists, new school, new meals, shorter nap time and now just coming off steroids for the umpteenth time. The OT we saw today suggested that we let Jonah be Jonah for the next couple of weeks, this meaning we just tolerate his abnormal behavior as he is getting comfort and security through it.
Since this was his first appointment with her she did an evaluation to see where he was falling in each area of concern. I can't say I'm surprised as I am with my son 24/7 that his sensory was so far out of whack. I was a little embarrassed. As the OT was going through the results of the test we both look over at Jonah who is at this time "petting"the carpeted floor. Oh my. Sensory integration was one of Jonah's early on diagnosis. Im not sure when or why therapy had come to a halt with regard to it, but now he is, no, we are paying for it. She will like to start seeing Jonah weekly. Today we set goals, and talked about how all the changes are going to have a more negative affect on him and for me to be watching for more "neurotic"behaviors.
Joy!
Tomorrow Jonah starts his first day of preschool at Carmen B. Pingree. I have so many emotions, but I have decided to deal with them on another day, a day when I'm not stressing out about the stupid things like finding a small back pack that Jonah will be able to wear.
Usually I would correct this behavior as it gets under my skin so fast! Instead I am fighting myself and just going to sit pretty, typing on my Blog.
This morning we went to our first Occupational Therapy appointment through the children's hospital. We are having BIG changes in our lives with Jonah being exited from early Intervention (he will soon be 3) I am now rearranging his entire world and I know it's hard for him. New therapists, new school, new meals, shorter nap time and now just coming off steroids for the umpteenth time. The OT we saw today suggested that we let Jonah be Jonah for the next couple of weeks, this meaning we just tolerate his abnormal behavior as he is getting comfort and security through it.
Since this was his first appointment with her she did an evaluation to see where he was falling in each area of concern. I can't say I'm surprised as I am with my son 24/7 that his sensory was so far out of whack. I was a little embarrassed. As the OT was going through the results of the test we both look over at Jonah who is at this time "petting"the carpeted floor. Oh my. Sensory integration was one of Jonah's early on diagnosis. Im not sure when or why therapy had come to a halt with regard to it, but now he is, no, we are paying for it. She will like to start seeing Jonah weekly. Today we set goals, and talked about how all the changes are going to have a more negative affect on him and for me to be watching for more "neurotic"behaviors.
Joy!
Tomorrow Jonah starts his first day of preschool at Carmen B. Pingree. I have so many emotions, but I have decided to deal with them on another day, a day when I'm not stressing out about the stupid things like finding a small back pack that Jonah will be able to wear.
Oct 13, 2010
Jonah, Jonah, Jonah
Yesterday, Jonah had an appointment at the Center for children with special health care needs (CSHCN) He met with the neuromotor team. It was a great appointment. Jonah was testing at 18 months for gross motor and 18 months for fine motor. Funny, his development and clothing size are the same! The head doctor decided that Jonah has made great strides and feels like I have pulled together an awesome team to care for him, so for now we will only attend the CSHCN clinic on an as needed basis. This is great for me, one less appointment to go to.
Jonah does have a great team of doctors. I have been trying to create this miracle team for 2.5 years and finally here it is. Unfortunately it won't last as Jonah will be turning 3 on the 7Th of November and he will loose his early intervention. This has been a hard reality, as we both have come to love our therapist. I am hopeful that Jonah will still be able to attend play & learn, a class offered by early intervention that we will just have to pay out of pocket for.
I ended up speaking with the school district about Jonah starting at the autism school earlier then expected. After much debate, I have just decided not to put Jonah in the school district and for now just focus on him going to a special school. Tuesday will be his first day, and together the teachers and I will write up a CARE plan.
2 of Jonah's doctors (newer doctors) want to do genetic testing on Jonah, as they find it peculiar that he has these lung issues and development issues. I am not sure that anything will come out of it as his pulmo doc reminded me (and she knows Jonah best!) his carbon dioxide levels were above 200. (normal is 35-40, this is what was killing him) But I am curious as to what else could be found out about my little man. Genetic testing is very interesting, but very pricey!
I'm in no hurry. As I said, I doubt that they will find anything that would place these two issues into one diagnosis.
Jonah does have a great team of doctors. I have been trying to create this miracle team for 2.5 years and finally here it is. Unfortunately it won't last as Jonah will be turning 3 on the 7Th of November and he will loose his early intervention. This has been a hard reality, as we both have come to love our therapist. I am hopeful that Jonah will still be able to attend play & learn, a class offered by early intervention that we will just have to pay out of pocket for.
I ended up speaking with the school district about Jonah starting at the autism school earlier then expected. After much debate, I have just decided not to put Jonah in the school district and for now just focus on him going to a special school. Tuesday will be his first day, and together the teachers and I will write up a CARE plan.
2 of Jonah's doctors (newer doctors) want to do genetic testing on Jonah, as they find it peculiar that he has these lung issues and development issues. I am not sure that anything will come out of it as his pulmo doc reminded me (and she knows Jonah best!) his carbon dioxide levels were above 200. (normal is 35-40, this is what was killing him) But I am curious as to what else could be found out about my little man. Genetic testing is very interesting, but very pricey!
I'm in no hurry. As I said, I doubt that they will find anything that would place these two issues into one diagnosis.
Oct 8, 2010
another day another...TEST
It's still so unreal that Jonah will be starting into the Autism school in just 10 days! I am starting to get a little freaked as we have been connected by the oxygen tube for most of his life. though I will not be cutting the oxygen tube (haha) I will be forced to cut the umbilical cord so to speak. Am I ready??? No. But this is what is best...and "It's good to do hard things!" right?
Today was more testing but with the school district. We have had testing set up for months now. This testing is to place Jonah in a special education program in the districts preschool. Though this might seem unecessary because he will be attending the autistic school, we need Jonah to have an Individual Education Plan (IEP) in place, and to get the IEP they need to of course do testing to see where he stands. My plan was to have Jonah go to the autistic school in the morning for therapies and then have him go to the school districts special ed preschool for more of a "social" therapy. (unfortunatly, the special ed preschool is mainstreamed with "normal"children, leaving most of the "therapy" up to Jonah, by watching the other kids in the class and picking up on social cues. Lame... I know!)
I have decided to keep our good news (Jonah being excepted early to the autistic school, they think he will not be going there until Jan) a secret for now. I want the IEP written up and then I will share. However, today when I shared my plan of having him attend both schools it all came to a screetching hault. They said that Jonah will not be able to do both programs. I am confused as to why, since they themselves told me that all they really offer is a "social outlet" with very limited therapies.
Of course this is not sitting well with me, so I will be lacing up my boxing gloves and getting in the ring with the school district starting Monday. If the insurance company has no problem paying for both what does the freeking school district care??? I had even mentioned that we would pivate pay, so that Jonah could get some socialization in, but they said that he would then be considered a "normal" child and get no speech therapy. UGH! can't win!... Yet!
Today was more testing but with the school district. We have had testing set up for months now. This testing is to place Jonah in a special education program in the districts preschool. Though this might seem unecessary because he will be attending the autistic school, we need Jonah to have an Individual Education Plan (IEP) in place, and to get the IEP they need to of course do testing to see where he stands. My plan was to have Jonah go to the autistic school in the morning for therapies and then have him go to the school districts special ed preschool for more of a "social" therapy. (unfortunatly, the special ed preschool is mainstreamed with "normal"children, leaving most of the "therapy" up to Jonah, by watching the other kids in the class and picking up on social cues. Lame... I know!)
I have decided to keep our good news (Jonah being excepted early to the autistic school, they think he will not be going there until Jan) a secret for now. I want the IEP written up and then I will share. However, today when I shared my plan of having him attend both schools it all came to a screetching hault. They said that Jonah will not be able to do both programs. I am confused as to why, since they themselves told me that all they really offer is a "social outlet" with very limited therapies.
Of course this is not sitting well with me, so I will be lacing up my boxing gloves and getting in the ring with the school district starting Monday. If the insurance company has no problem paying for both what does the freeking school district care??? I had even mentioned that we would pivate pay, so that Jonah could get some socialization in, but they said that he would then be considered a "normal" child and get no speech therapy. UGH! can't win!... Yet!
Oct 7, 2010
Everything happens for a reason
Through this journey I have been on, I seem to always get the same comment from people who don't know what else to say, people who have good intentions and/or people who really believe this mantra..."Every thing happens for a reason" I have always believed that we make our own fate...then along came Jonah.
Daily I ask myself, "why?" I have so many "why" questions I could write a book as thick as the encyclopedia. Well, ladies and gents, today I am a believer in that mantra...
EVERYTHING DOES HAPPEN FOR A REASON!
A few weeks ago I was talking with a dear friend and she suggested I re-read a book I read pre Jonah. The book is written by a mother who's son was diagnosed with autism and she goes from knowing nothing about it to changing her boy's life around. I ordered the book a few days ago and as soon as it came in the mail my nose has been stuck in the book. It's eerie weird how much her son and mine have in common. While I am going through my journey with Jonah this book is like narrating our life. like I said eerie!
So the big news...
Jonah had his first appointment at the autism school here in Salt Lake. I knew all along he would have to go through testing to see if Jonah would be an appropriate fit in the school. Right away they hauled Jonah off to one of the class rooms where he would work with a speech therapist and the head teacher. Jonah spent 3.5 hours today (as did I) going through testing, while I answered very invasive and emotionally challenging questions. Right off the bat the doctor who would be diagnosing Jonah said to me "I am the mean guy, the guy who is going to want to know all of Jonah's down falls, the guy who will also be pointing them out to you." And he was right.
Over the past few years I have tried to harden my shell, tried to put up gates masked with a friendly smile, while people pick apart, diagnose, medicate, and operate on my guy. Truth be told its been the hardest thing I have ever done and ever will do. Today while sitting in the doctors office I was asked to also pick apart my son. I did my best to hold it all together but as soon as the doctor left me alone in his office I cracked. He returned to his office with Jonah by his side. Right when Jonah entered the office where I was he started with his clapping. (something he has started doing whenever he gets excited) The doctor asked a few more questions then handed me a sheet of paper declaring that Jonah has PDD-NOS one mark away from being declared autistic. (thanks to the practice "makebelieveplay" we have been working with Jonah on) The doctor was quick to burst my bubble saying "what is the difference in 5 shades of red when you add one more?" then followed that by saying next year when the new bla bla medical book comes out PDD-NOS and autism will be one. I told him I prefer the label PDD-NOS over Autism. He laughed.
Jonah will start at the school in 2 weeks. I feel so blessed. I am forever grateful to the behavior doctor who told me she thought Jonah had Autism, the Dr who I was once so hurst by, just months ago. If it weren't for her diagnosis I would still be sitting wondering what to do with my child. Still wondering why people keep telling me everything happens for a reason, when no good is coming from what was happening. Now I can say that something wonderful has come. Jonah is lucky to have found a spot so soon, as the waiting list for this clinic is usually out 8 months. I made a phone call at the perfect time, he got in right away, and now intense therapy will begin.
Daily I ask myself, "why?" I have so many "why" questions I could write a book as thick as the encyclopedia. Well, ladies and gents, today I am a believer in that mantra...
EVERYTHING DOES HAPPEN FOR A REASON!
A few weeks ago I was talking with a dear friend and she suggested I re-read a book I read pre Jonah. The book is written by a mother who's son was diagnosed with autism and she goes from knowing nothing about it to changing her boy's life around. I ordered the book a few days ago and as soon as it came in the mail my nose has been stuck in the book. It's eerie weird how much her son and mine have in common. While I am going through my journey with Jonah this book is like narrating our life. like I said eerie!
So the big news...
Jonah had his first appointment at the autism school here in Salt Lake. I knew all along he would have to go through testing to see if Jonah would be an appropriate fit in the school. Right away they hauled Jonah off to one of the class rooms where he would work with a speech therapist and the head teacher. Jonah spent 3.5 hours today (as did I) going through testing, while I answered very invasive and emotionally challenging questions. Right off the bat the doctor who would be diagnosing Jonah said to me "I am the mean guy, the guy who is going to want to know all of Jonah's down falls, the guy who will also be pointing them out to you." And he was right.
Over the past few years I have tried to harden my shell, tried to put up gates masked with a friendly smile, while people pick apart, diagnose, medicate, and operate on my guy. Truth be told its been the hardest thing I have ever done and ever will do. Today while sitting in the doctors office I was asked to also pick apart my son. I did my best to hold it all together but as soon as the doctor left me alone in his office I cracked. He returned to his office with Jonah by his side. Right when Jonah entered the office where I was he started with his clapping. (something he has started doing whenever he gets excited) The doctor asked a few more questions then handed me a sheet of paper declaring that Jonah has PDD-NOS one mark away from being declared autistic. (thanks to the practice "makebelieveplay" we have been working with Jonah on) The doctor was quick to burst my bubble saying "what is the difference in 5 shades of red when you add one more?" then followed that by saying next year when the new bla bla medical book comes out PDD-NOS and autism will be one. I told him I prefer the label PDD-NOS over Autism. He laughed.
Jonah will start at the school in 2 weeks. I feel so blessed. I am forever grateful to the behavior doctor who told me she thought Jonah had Autism, the Dr who I was once so hurst by, just months ago. If it weren't for her diagnosis I would still be sitting wondering what to do with my child. Still wondering why people keep telling me everything happens for a reason, when no good is coming from what was happening. Now I can say that something wonderful has come. Jonah is lucky to have found a spot so soon, as the waiting list for this clinic is usually out 8 months. I made a phone call at the perfect time, he got in right away, and now intense therapy will begin.
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