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?
Feb 12, 2011
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.
Jan 26, 2011
Im Alive!
Im still alive, just involved...
My Pshych class is consuming me.
I will post a decent post on Sunday.
Im taking the kids to CA to see the
Gmas & Gpas over the weekend. Jonah
needs the clean air. His lungs need
a break.
My Pshych class is consuming me.
I will post a decent post on Sunday.
Im taking the kids to CA to see the
Gmas & Gpas over the weekend. Jonah
needs the clean air. His lungs need
a break.
Jan 20, 2011
No meds
I have made a huge mistake. I put off getting Jonah's medication for his *issues* because he was doing so well after discharge from the hospital in November. Well 3 days before his urology appointment he started having those *issues* again. (See that post, under Urology bla bla bla)
Long story short, Jonah is still being denied medication for his priapism. He has insurance through the state and the state is saying no way, not ever! I called his medical case worker (u get one of these when you bother the insurance company to much)who is through the Insurance provider and they say yeah, sure we will pass it through if the state agrees to it. Well flipit thay won't agree! So...Im suppose to do what now? I have already called the dr multiple times, she is way to busy to call me back instead she has her secratery do that and the secratery can't answer any of the questions Im asking because she's not the doctor. UGH!!!
So now I wait. Waiting for what Im not quite sure, but I know if I call and have to talk to that seratery again Im going to beat myself over the head with my phone.
For Journaling purposes:
Jonah had his firt dentist appointment today. He has all but 3 teeth. Jonah's teeth were very healthy! (consittering he just grew them in a year ago they better be) Jonah did not respond well to the dentist putting his hands into Jonah's mouth and Jonah reacted by biting the dentist very hard. The detist pulled his hand out of J's mouth and looked at the top of his finger, which was no longer protected by the lavender glove. Oh Jonah! What a pill you are.
Long story short, Jonah is still being denied medication for his priapism. He has insurance through the state and the state is saying no way, not ever! I called his medical case worker (u get one of these when you bother the insurance company to much)who is through the Insurance provider and they say yeah, sure we will pass it through if the state agrees to it. Well flipit thay won't agree! So...Im suppose to do what now? I have already called the dr multiple times, she is way to busy to call me back instead she has her secratery do that and the secratery can't answer any of the questions Im asking because she's not the doctor. UGH!!!
So now I wait. Waiting for what Im not quite sure, but I know if I call and have to talk to that seratery again Im going to beat myself over the head with my phone.
For Journaling purposes:
Jonah had his firt dentist appointment today. He has all but 3 teeth. Jonah's teeth were very healthy! (consittering he just grew them in a year ago they better be) Jonah did not respond well to the dentist putting his hands into Jonah's mouth and Jonah reacted by biting the dentist very hard. The detist pulled his hand out of J's mouth and looked at the top of his finger, which was no longer protected by the lavender glove. Oh Jonah! What a pill you are.
Jan 17, 2011
it hurts so good
The past few days I have been hitting the gym pretty hard as I am planning on doing the Utah Valley Marathon. Of course I am not ready for a marathon, I am training to do the 5k...but hoping I will be ready to do a half. We shall see. Today I did all 3 miles and I'm hurting big time! What's the cure for sore muscles? I need to work on time and endurance. Right now I am training 2 min walking 1 min running over and over. although on that last mile I sis 1 min walk 1 min run just to finish faster. over night my favorite snack changed from red licorice to peanut butter and celery, and wheat thins crackers to plain air popped popcorn. Funny how when you are working out and sweating hard, what your body craves is different then when you are sharing a blood supply with the couch. I'm going with the flow of it as I refuse to go into my 30's over weight!
Eww, something gross wait... I will back up......
Last week Jonah pulled his feeding tube right of his belly. Twice! Only the latter time he did this magic trick I had no clue he did it. When I was giving him his morning feeds I freaked when I saw that it was no longer stuck in his tummy like a cork in a bottle. I was freaking out only because the space where the tube (more like a button) goes in to the stomach was closed and I mean closed! I couldn't fit the tip of a syringe into it, which tells me that it has been out for hours! I hurried the kids into the car and we drove up to the hospital. Luckily I was on the phone with my friend and she reminded me that I could go into the gastronomy clinic and have the surgeons nurses help. that I did, only the surgeons nurses couldn't help as the hole was closed. They got the surgeon. Long story short, I have been looking and looking for the feeding tube button and even called his school to see if it was there...Nothing turned up so I just assumed that perhaps the dog ate it.... Well This morning as I was sweeping the floor, it was lying underneath the ottoman. Its pretty disgusting looking so I threw it out. But just in case you were wondering... Yes, if Jonah pulls out the tube we do indeed put it (the same one) back in. they are good until the balloon at the end pops from stomach acid. Oh, and the stomach isn't sanitary.
Eww, something gross wait... I will back up......
Last week Jonah pulled his feeding tube right of his belly. Twice! Only the latter time he did this magic trick I had no clue he did it. When I was giving him his morning feeds I freaked when I saw that it was no longer stuck in his tummy like a cork in a bottle. I was freaking out only because the space where the tube (more like a button) goes in to the stomach was closed and I mean closed! I couldn't fit the tip of a syringe into it, which tells me that it has been out for hours! I hurried the kids into the car and we drove up to the hospital. Luckily I was on the phone with my friend and she reminded me that I could go into the gastronomy clinic and have the surgeons nurses help. that I did, only the surgeons nurses couldn't help as the hole was closed. They got the surgeon. Long story short, I have been looking and looking for the feeding tube button and even called his school to see if it was there...Nothing turned up so I just assumed that perhaps the dog ate it.... Well This morning as I was sweeping the floor, it was lying underneath the ottoman. Its pretty disgusting looking so I threw it out. But just in case you were wondering... Yes, if Jonah pulls out the tube we do indeed put it (the same one) back in. they are good until the balloon at the end pops from stomach acid. Oh, and the stomach isn't sanitary.
Jan 13, 2011
Jan 9, 2011
just a post
I wish I had something brilliant to blog about but I don't. I'm settling for random thoughts tonight.
Would you believe my throat hurts? After all that sickness over Christmas, I thought for sure I have earned a few months of sick free-ness. The pain is getting unbearable so tomorrow I shall call my doc. I started an antibiotic but nothing has changed so now doubting it's strep like I thought...
My "New Years Resolution" for 2011 was to get organized in a "balls to the wall" kind of way. I started this weekend and it was harder then I thought it would be. Needless to say, I got as far as declothing Jonah's closet and throwing out UN-needed medical stuff. This left me with a room full of toy pieces, therapy toys, ride on toys and boxes of medical stuff. You should have seen it! My hubs walked in and first thing out of his mouth was "I thought you were cleaning his room?" ...I leaned forward while sitting in the midst of all of this stuff and swung the door closed. ;)
School starts back up tomorrow for me. I am super excited about my Psychology class but getting anxious about the other...Math. Ugh, I havent even finished reading the syllabus and I'm doubting my capability's. I'm trying to stay positive...
Ok that was a lie.
I am still upset about J's urology appointment and will be calling back up to the same urologist to get some unasked questions answered. I'm bothered that this bummer feeling has haunted me this entire weekend. Then I will call J's ped to get a referral to someone new.
I live in an old house. This was our first house purchase as newly weds! I was 23 when we bought it and it was an exciting "first home!" If only I knew this would be the house we would be raising 2 kids in I would have waited until we found a more appropriate house as this one is too small, and was set up for a more creative-fix it your self-type of couple. We are not that couple. We have much knowledge of what we need to do, and slowly we hope to get it all in order and done so that in the next few years we will be able to perhaps sale and buy again.
Newest obsession: Move over Grey's I'm a lovin' The Real House Wives of Beverly Hills! Haha... I know right?
Jan 7, 2011
Urology~ bla bla bla
Whoa, what a week! All week I have been getting up at 5am to start Jonah's meds and then filled in at my old place of work, then ran here, there and everywhere to take kiddos to school, Therapy and appointments. I have not made it into bed before 11pm I'm beat! It has been a busy week for me but it doesn't stop there... next week school starts back up for Spring semester. I am going to enjoy this weekend even if I have to squeeze every ounce of fun out of it!
Jonah had an appointment with Urology...These doctors are so strange and are becoming more useless and a waste of time. I don't understand why I can't get a doc who will just take the time to listen and come up with some kind of idea of what's going on with Jonah and his priapism. We wasted in the waiting room longer then the doctor spent time with Jonah. She didn't ask any questions or even sound interested. She was super quick to send us into her assistant's office where there she wrote a script for Once again... VIAGRA. I told her that I was unable to pick up that prescription due to insurance issues, but she sent it with me anyways and said that someone from the office would call me before the day was over to give me the A-Okay to head to the PCMC Pharmacy to pick it up. Well, You guessed it no phone call. When Jonah was in house at the hospital he had a great urologist who seemed super excited about this new challenge. I want that Dr back! I believe his name was Dr. Wallace. (if you know this Dr please let me know if he See's patients - out patient)
Hope everyone is well and ready for Saturday!
Jonah had an appointment with Urology...These doctors are so strange and are becoming more useless and a waste of time. I don't understand why I can't get a doc who will just take the time to listen and come up with some kind of idea of what's going on with Jonah and his priapism. We wasted in the waiting room longer then the doctor spent time with Jonah. She didn't ask any questions or even sound interested. She was super quick to send us into her assistant's office where there she wrote a script for Once again... VIAGRA. I told her that I was unable to pick up that prescription due to insurance issues, but she sent it with me anyways and said that someone from the office would call me before the day was over to give me the A-Okay to head to the PCMC Pharmacy to pick it up. Well, You guessed it no phone call. When Jonah was in house at the hospital he had a great urologist who seemed super excited about this new challenge. I want that Dr back! I believe his name was Dr. Wallace. (if you know this Dr please let me know if he See's patients - out patient)
Hope everyone is well and ready for Saturday!
Jan 2, 2011
Christmas Miracles
For jounaling puposes I have to include this drama filled entry.
We left California the day after Christmas. Bright and early as I didn't want to be driving in the dark and we had a long 14 hr drive ahead of us. Isaac strapped the lugage to the roof racks and smashed every toy Santa had brought in the back of the car. Our family left my mom's house around 4:30am. By 7am I was so tired and wished we stayed in bed a little longer. We pulled over at a truck stop right outside Paso Robles Ca. I slept while Isaac and the kids walked the dog and ran around to get the wiggles out. After an hour, everyone piled back into the car and we headed down to Barstow where we would fill the tank and have some run around time. We pulled into the gas station, the first one right off the freeway, Isaac jumped out and headed for the bathroom while I was fighting with the gas pump to work. (FYI: in Cali the pump needs to be firmly pushed into the gas tank to trigger the gas flow) I didn't get that figured out so I assumed that the pump was broken so we would just get gas across the street. When Isaac jumped back into the loaded down mini SUV he said that we were down one bag. "WHAT??" I freeked. As of course it was MY brand new luggage bag with all of MY clothes, MY makeup, MY shoes, MY Christmas gifts. I was pissed, and seriously could have divorced my husband right there in the middle of the desert in Barstow California. Yes, I cried. I called my mom, cause that's what I do when I can't think streight. She kinda calmed me down but I was still angry... Why is it always ME?? Why could'nt Isaac's stuff fly off the roof rack?? He has tons of clothes at home and doesn't own any CJ Banks clothing!
We back tracked 3 hours one way and 3 hours back only to return to Barstow, once again with no luggage. 6 hours added onto our trip for nothing. We stoped at that same gas station the one right off the freeway to fill up. This time Morgan and I leaped for the bathrooms and Isaac pumped gas. When Morg and I came out we switched places with Isaac. A Marine Chaplin approached me. He had been watching Jonah hooked up to his oxygen and recieving a tube feeding. The Marine asked if he could pray for my son. Cought off guard, and worried he had heard me yelling as we pulled in, I eagerly said yes, that he could pray for him. (When I said that I was thinking he would do a prayer roll, or pray in his car...) He reached in though Jonah's window asked for his name and prayed that Jonah will have a prosperus life and that he (Jonah) would be able to bless many through his life. It was one of the most beautiful prayers I had ever heard. When the Marine was through praying he held Jonah's hand and said that he would see him again. It was so strange and yet so amazing. I am forever grateful to that young Chaplin. I was still devistated that all my stuff was somewhere in someones posetion, but a calmness came over me as all that I had lost was just stuff. We drove a long 23 hours mostly in silence because everyone was afraid of the wrath of mommy. I Everything was replaceable. I had a few flareups of disappointment and why me's, but I let the husband and kiddos believe I was still upset so I didn't have to listen to fighting, singing or are we there yet?
Afew days ago, during dinner, we heard a knock at the door. Isaac got up from the table to answer the door. Know one was there. I would like to say that when he opened the door my luggage was sitting on the front porch but that was not the case. Insrtead an envelope layed on the door mat. When he opened it he saw that inside the envelope was a card with nothing written and inside that card was a stack of $20 bills.
I am so blessed, MY family is so blessed. I am so grateful to have many people in my life who are mindful of my beautiful family. I have only shared the first story with a few others, so I know that the person/people who left that envelope of money probly didn't know that I had lost most of my clothes. I am grateful for Christmas miracles. I am grateful for those who are selfless. I am grateful for the example that this act has taught my children.
Hope this new year brings many opportunities for my family to pay it forward.
We left California the day after Christmas. Bright and early as I didn't want to be driving in the dark and we had a long 14 hr drive ahead of us. Isaac strapped the lugage to the roof racks and smashed every toy Santa had brought in the back of the car. Our family left my mom's house around 4:30am. By 7am I was so tired and wished we stayed in bed a little longer. We pulled over at a truck stop right outside Paso Robles Ca. I slept while Isaac and the kids walked the dog and ran around to get the wiggles out. After an hour, everyone piled back into the car and we headed down to Barstow where we would fill the tank and have some run around time. We pulled into the gas station, the first one right off the freeway, Isaac jumped out and headed for the bathroom while I was fighting with the gas pump to work. (FYI: in Cali the pump needs to be firmly pushed into the gas tank to trigger the gas flow) I didn't get that figured out so I assumed that the pump was broken so we would just get gas across the street. When Isaac jumped back into the loaded down mini SUV he said that we were down one bag. "WHAT??" I freeked. As of course it was MY brand new luggage bag with all of MY clothes, MY makeup, MY shoes, MY Christmas gifts. I was pissed, and seriously could have divorced my husband right there in the middle of the desert in Barstow California. Yes, I cried. I called my mom, cause that's what I do when I can't think streight. She kinda calmed me down but I was still angry... Why is it always ME?? Why could'nt Isaac's stuff fly off the roof rack?? He has tons of clothes at home and doesn't own any CJ Banks clothing!
We back tracked 3 hours one way and 3 hours back only to return to Barstow, once again with no luggage. 6 hours added onto our trip for nothing. We stoped at that same gas station the one right off the freeway to fill up. This time Morgan and I leaped for the bathrooms and Isaac pumped gas. When Morg and I came out we switched places with Isaac. A Marine Chaplin approached me. He had been watching Jonah hooked up to his oxygen and recieving a tube feeding. The Marine asked if he could pray for my son. Cought off guard, and worried he had heard me yelling as we pulled in, I eagerly said yes, that he could pray for him. (When I said that I was thinking he would do a prayer roll, or pray in his car...) He reached in though Jonah's window asked for his name and prayed that Jonah will have a prosperus life and that he (Jonah) would be able to bless many through his life. It was one of the most beautiful prayers I had ever heard. When the Marine was through praying he held Jonah's hand and said that he would see him again. It was so strange and yet so amazing. I am forever grateful to that young Chaplin. I was still devistated that all my stuff was somewhere in someones posetion, but a calmness came over me as all that I had lost was just stuff. We drove a long 23 hours mostly in silence because everyone was afraid of the wrath of mommy. I Everything was replaceable. I had a few flareups of disappointment and why me's, but I let the husband and kiddos believe I was still upset so I didn't have to listen to fighting, singing or are we there yet?
Afew days ago, during dinner, we heard a knock at the door. Isaac got up from the table to answer the door. Know one was there. I would like to say that when he opened the door my luggage was sitting on the front porch but that was not the case. Insrtead an envelope layed on the door mat. When he opened it he saw that inside the envelope was a card with nothing written and inside that card was a stack of $20 bills.
I am so blessed, MY family is so blessed. I am so grateful to have many people in my life who are mindful of my beautiful family. I have only shared the first story with a few others, so I know that the person/people who left that envelope of money probly didn't know that I had lost most of my clothes. I am grateful for Christmas miracles. I am grateful for those who are selfless. I am grateful for the example that this act has taught my children.
Hope this new year brings many opportunities for my family to pay it forward.
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