The 5 P's according to Miss Jane rule my life! I live by these rules. To you they may be silly but for me, a Virgo, they provide the structure and guidelines that every Virgo craves. What are these words of wisdom???
Proper Planning Prevent Poor Performance!
Yes I know we just finally hit spring but, remember those 5 P's!
I have been 100% focused on finding J the best summer program out there. Guess what? It does not exist. (frown) So like the mama bear I have become, I am creating one. One, almost so perfect, I feel blessed. He will continue with speech, feeding, occupational and physical therapies, but I was so intrigued with the music therapies up at the hospital I would like to get him involved with that as well.
I have become very concerned about his behavior that my most important mission for the summer, is to find J an ABA therapist (applied behavior analysis) This is going to cost some green. J's school sent home a pamphlet about a center that offers ABA therapy and it looks promising. Tomorrow I will give them a call. J is on the waiting list for another type of ABA therapy that is also a play group with one of his old therapists. It looks promising for him to make it in the class by summer. My fingers are crossed.
No, this is not to much for him.
The one thing I have learned about my boy since his diagnosis (ASD PDD-NOS) is that my child thrives on structure, structure, structure! And recently I have learned that change in his life is getting more and more difficult for him to except. I feel like I am losing him, the frustration and anger he expresses saddens me.... then he will calm down, gesture for me to pick him up, and kiss my face. I love him. In those moments I gather great strength to keep chugging along and making the world a kinder place for him to grow, explore and become the child he is meant to be.
Mar 30, 2011
Mar 28, 2011
Blog is going private
Yes, it's true. I have decided to make this blog a private one. I have learned a hefty lesson. The blog will remain private until I am able to take out info I feel may be to private for the world wide web.
If you are an avid reader please leave me your email addy so I can "invite" you. If you have already done so on FB, I have you added. It will go private on Friday. Until then Read on!
Jonah is home and I love it! We love it! He love's it! Oh, so much love in our home!
If you are an avid reader please leave me your email addy so I can "invite" you. If you have already done so on FB, I have you added. It will go private on Friday. Until then Read on!
Jonah is home and I love it! We love it! He love's it! Oh, so much love in our home!
Mar 27, 2011
Home!
Today is a beautiful day! Today nothing will stand in my to enjoy it. J is coming home!!! It's funny how quiet ones house can be when you are missing just one child. Now we know who stirs the pot and causes the chaos! The much loved chaos of course!
J had another sputum culture taken, and it grew nothing. Infact I was mistinformed. He did not have HIB (to whitch you are immunized for)! He had a tiny spot of Influenza B. It was just a little tiny bit and the heavy antibiotics have worked! This is the reason that clean out are so crucial to a child with CF and/or Bronchiectasis. They immuno comprimised tend to catch things that others do not.
J had another sputum culture taken, and it grew nothing. Infact I was mistinformed. He did not have HIB (to whitch you are immunized for)! He had a tiny spot of Influenza B. It was just a little tiny bit and the heavy antibiotics have worked! This is the reason that clean out are so crucial to a child with CF and/or Bronchiectasis. They immuno comprimised tend to catch things that others do not.
Mar 26, 2011
Going Home Tomorrow.
Yay! Tomorrow is go home day! J doing so well health wise, it's awesome! This is why I love clean outs! Behavioral wise J is suffering. He is having a difficult time with the lack of structure that the hospitalization gives. I have tried to do some things with him that he would normally do, but even the simple tasks are getting difficult as we have taken them out of the familiar setting he is used to doing them in. The hospital offers an amazing music therapy class that we have attended both days it was available. At first J was very hesitant to even go into the room, but with a little assurance he made his way in and joined the group. The second session he walked right in sat down and was ready to play some music. In fact every time the therapist asked a question J would raise his hand and yell "Neeeeee!" (Me) Even if the question was "Who is the biggest, scariest, ugliest alien in space?" All the older boys would laugh and yell out a name, but my J, well, he would yell "neeeee!" Love it!
My roof is on! Very exciting! But.... I am waiting for the process of clean up to happen.
Mo and Isaac had a blast in Disneyland. I picked them both up last night and we went out for dinner. They have only been gone for 4 days but man did I miss them! Mo got off the plane and just held my hand so tight while she went on and on about everything. It was so wonderful to listen to her tell me the new experiences that she had in that short time. She had so much fun playing with her cousin Robbin. I will post pics when I am home and Jonah is settled back into his routines.
I'm so grateful the whole vacation worked out as planned. Daddy bought her a beautiful princess gown, (a Bell gown, from Beauty & the Beast). He also got her a crown and a wand. As soon as walked in the house she was stripping off her jacket to put the dress on! She is so beautiful. I am such a lucky mama to have these two beautiful kids. I love them. Isaac had fun too. he came home barring gifts, Jonah has his first Mickey shirt! We brought it up to the hospital for him to go home in tomorrow.
My roof is on! Very exciting! But.... I am waiting for the process of clean up to happen.
Mo and Isaac had a blast in Disneyland. I picked them both up last night and we went out for dinner. They have only been gone for 4 days but man did I miss them! Mo got off the plane and just held my hand so tight while she went on and on about everything. It was so wonderful to listen to her tell me the new experiences that she had in that short time. She had so much fun playing with her cousin Robbin. I will post pics when I am home and Jonah is settled back into his routines.
I'm so grateful the whole vacation worked out as planned. Daddy bought her a beautiful princess gown, (a Bell gown, from Beauty & the Beast). He also got her a crown and a wand. As soon as walked in the house she was stripping off her jacket to put the dress on! She is so beautiful. I am such a lucky mama to have these two beautiful kids. I love them. Isaac had fun too. he came home barring gifts, Jonah has his first Mickey shirt! We brought it up to the hospital for him to go home in tomorrow.
Mar 23, 2011
Half way through the admit
Today I woke up a little uneasy. I'm stressed. My face is even breaking out. I should have just allowed my self to cry it all out last night as I was home alone (Isaac and Morgan being in Disneyland and J up at the hospital). Instead I climbed into bed, and tried not to let my mind wonder into deep thoughts about my Jonah and what is going on with him. Jonah had a rough start to the night, starting with me laying practically on top of him holding him down so he would not cause harm to his body, nor to me.
Today I let it out. Embarrassing. Of course I did it as soon as I saw a familiar face. Jonah's teacher.
Jonah is having some concerning behavioral issues. I have been chalking it up to lot's of steroids, terrible 3's and any other excuse I can drum up to except the behavior. Since we have been in the hospital it has all been amplified. Amplified to the point that he now has a HUGE, and I mean huge open your mouth as wide as you can bite mark on his arm, not to mention the scratches on his legs, and the other bite marks on his body. He has also taken to biting his bed, sheets, blankets, and others. I'm so sad for him. He is so frustrated and doesn't know what or how to regulate himself. I had plans to go to a 2 day conference at Jonahs school so there I went. I checked in and sat down, realizing that this was not the session I wanted to attend. I went to go pop in to Jonah's class to talk with his teacher to ask some questions. She is so nice. I couldn't help but fall apart when talking about Jonah. She brought up a very interesting question. Can other kiddos be affected by Jonah's HIB? Oh my gosh. I don't know! Have I become the mom who is exposing other children to my child's illness? Have I become just like the parent I despise for letting their child get mine sick? Not that I knew he had it. But these questions must be answered. Im waiting for the attending to stop by to give me some answers. Jonah is not on any precautions, they are allowing him to go into the play room where other sick kids are, so I'm hoping that it's yet again just another Jonah issue, one that will not harm other kids. I just feel ill about the possibilities because some parents of kids at Jonah's school may opt not to immunize due to their diagnosis, which I fully respect as Jonah is only a partially immunized child him self.
Today I let it out. Embarrassing. Of course I did it as soon as I saw a familiar face. Jonah's teacher.
Jonah is having some concerning behavioral issues. I have been chalking it up to lot's of steroids, terrible 3's and any other excuse I can drum up to except the behavior. Since we have been in the hospital it has all been amplified. Amplified to the point that he now has a HUGE, and I mean huge open your mouth as wide as you can bite mark on his arm, not to mention the scratches on his legs, and the other bite marks on his body. He has also taken to biting his bed, sheets, blankets, and others. I'm so sad for him. He is so frustrated and doesn't know what or how to regulate himself. I had plans to go to a 2 day conference at Jonahs school so there I went. I checked in and sat down, realizing that this was not the session I wanted to attend. I went to go pop in to Jonah's class to talk with his teacher to ask some questions. She is so nice. I couldn't help but fall apart when talking about Jonah. She brought up a very interesting question. Can other kiddos be affected by Jonah's HIB? Oh my gosh. I don't know! Have I become the mom who is exposing other children to my child's illness? Have I become just like the parent I despise for letting their child get mine sick? Not that I knew he had it. But these questions must be answered. Im waiting for the attending to stop by to give me some answers. Jonah is not on any precautions, they are allowing him to go into the play room where other sick kids are, so I'm hoping that it's yet again just another Jonah issue, one that will not harm other kids. I just feel ill about the possibilities because some parents of kids at Jonah's school may opt not to immunize due to their diagnosis, which I fully respect as Jonah is only a partially immunized child him self.
Mar 22, 2011
Disneyland or Bust
Mar 21, 2011
Im speechless
Okay, not really. But I am shocked! Jonah has HIB......Jonah has HIB Again! I am so ...I don't even know the emotion, I can't lable it. Disappointed? This can be extremely difficult to remove from the deep tissue in the lungs. Hmmm, Is this the same HIB that was affecting my guy way back in the beginning of his journey? Lot's to think about, many questions racking up in my brain. I don't meet with the doc till tomorrow. If you have answers or knowledge, share please!
I went down to get Jonah's medical records. I knew it would cost me but I was thinking around $30 bucks. So wrong! Try $125! At .28 cents a page and a billion pages of medical records I guess it would get pricey! I'm way to frugal to buy MY son's medical records (I don't think they should be for sale) so I will just have my doctors office request them (umm... That's you Suz) and have them in 2 weeks.
I went down to get Jonah's medical records. I knew it would cost me but I was thinking around $30 bucks. So wrong! Try $125! At .28 cents a page and a billion pages of medical records I guess it would get pricey! I'm way to frugal to buy MY son's medical records (I don't think they should be for sale) so I will just have my doctors office request them (umm... That's you Suz) and have them in 2 weeks.
Mar 20, 2011
Update
It may be just me but when I feel like Im being pushed to the max, a theme song pops into my head and there it stays. Tonights song to highlight all of my chaos is Life House ~ Broken. Deep, I know.
The scoop~
Jonah was admitted on Friday. He was NPO (with out food or water) for next to 8 hours and handled it like a champ! (Go Jonah!) We were sent in for his procedure to have first the IV placed and then the Picc line placed and Walla! Both went in FIRST try! I was amazed as was his medical team. He was admitted through 'Specials' and was transported up to his room flying high (he was still kinda sedated) on his big boy bed! Yes! He was in a twin sezed medical bed not a scary cage looking crib. You should have seen this kid, sitting on his big boy bed like a king! One hand on the remote, one on his (clearing of the throat) and a bink in his mouth! One happy Jonah...well, sorta.
So, the priapism issues were still going strong at this point. Someone from the team called the attending from Urology. Hells yes people! (lol) She was amazing! She heard me.... She ecnoledged me....she even, right there, pulled up tests and started putting together a plan for Monday! I love it! She was impressed how much I knew about my child, which I found shocking... Don't all parents research and educate them selves on what is wrong with their child? Ummm, YOU SHOULD! The Queen Urologist suspects that maybe J has a blood disorder of some sort. Tomorrow Jonah will meet with the hemo peeps and we will see what the heck might be going on with him and his wee wee. They will be looking for abnoralities with his red blood cells.
Now on to the white blood cells... Jonah had a sputum culture done (he coughed it up himself, Yay!) and there have been findings of strep and low white blood cells. Im so glad He has the pulmonologist that he has. She is good! Real good! Im glad that she sees that he needs to be in the hospital even when the hospital staff don't get why we are admitting a healthy child. He has absolutly no reserve for illness. The IV anti-biotic he is on will kill the bacteria that is forming in his lungs as I type. I actually had a person ask why Jonah was even there, and why he needs a clean out if he doesn't have CF. This bothered me on so many different levels. This person was not his nurse nor his doctor. Nor had this person ever asked me about J's history, or even what the final diagnosis was. What did he think I was just out of ideas on how to spend spring break with my kid? Whatever. Tonight I spoke with him again and told him Jonahs diagnosis. He said that made sense of why a clean out was needed. Not that I needed his appoval more like I wanted him to just understand. This is why I like having the same people over and over... they know Jonah, they know his history, I know they don't judge or question as most of them saw him at his sickest.
Well tomorrow will be here too soon, so I must try to get some sleep. My princess is off to Disneyland with daddy tomorrow and she is ready! I on the other hand am not looking forward to having her gone. I have never been this far away from her. I am staying positive for her sake, but inside my heart is filling up with tears. Oh how much I love my little Morgan!
The scoop~
Jonah was admitted on Friday. He was NPO (with out food or water) for next to 8 hours and handled it like a champ! (Go Jonah!) We were sent in for his procedure to have first the IV placed and then the Picc line placed and Walla! Both went in FIRST try! I was amazed as was his medical team. He was admitted through 'Specials' and was transported up to his room flying high (he was still kinda sedated) on his big boy bed! Yes! He was in a twin sezed medical bed not a scary cage looking crib. You should have seen this kid, sitting on his big boy bed like a king! One hand on the remote, one on his (clearing of the throat) and a bink in his mouth! One happy Jonah...well, sorta.
So, the priapism issues were still going strong at this point. Someone from the team called the attending from Urology. Hells yes people! (lol) She was amazing! She heard me.... She ecnoledged me....she even, right there, pulled up tests and started putting together a plan for Monday! I love it! She was impressed how much I knew about my child, which I found shocking... Don't all parents research and educate them selves on what is wrong with their child? Ummm, YOU SHOULD! The Queen Urologist suspects that maybe J has a blood disorder of some sort. Tomorrow Jonah will meet with the hemo peeps and we will see what the heck might be going on with him and his wee wee. They will be looking for abnoralities with his red blood cells.
Now on to the white blood cells... Jonah had a sputum culture done (he coughed it up himself, Yay!) and there have been findings of strep and low white blood cells. Im so glad He has the pulmonologist that he has. She is good! Real good! Im glad that she sees that he needs to be in the hospital even when the hospital staff don't get why we are admitting a healthy child. He has absolutly no reserve for illness. The IV anti-biotic he is on will kill the bacteria that is forming in his lungs as I type. I actually had a person ask why Jonah was even there, and why he needs a clean out if he doesn't have CF. This bothered me on so many different levels. This person was not his nurse nor his doctor. Nor had this person ever asked me about J's history, or even what the final diagnosis was. What did he think I was just out of ideas on how to spend spring break with my kid? Whatever. Tonight I spoke with him again and told him Jonahs diagnosis. He said that made sense of why a clean out was needed. Not that I needed his appoval more like I wanted him to just understand. This is why I like having the same people over and over... they know Jonah, they know his history, I know they don't judge or question as most of them saw him at his sickest.
Well tomorrow will be here too soon, so I must try to get some sleep. My princess is off to Disneyland with daddy tomorrow and she is ready! I on the other hand am not looking forward to having her gone. I have never been this far away from her. I am staying positive for her sake, but inside my heart is filling up with tears. Oh how much I love my little Morgan!
Mar 18, 2011
Morganism
- I'm going to Disney Land to ride the Holler Toasters and the Tea Pots!
Had to share! I think it's pretty funny!
Mar 17, 2011
Gearing up!
I always get that unsettled feeling before one of Jonahs admits. I guess it's the down fall of knowing that you will be subjected to the hospital life style, rather then being rushed up and admitted with only a moments notice. But on the other hand I am able to plan out some stuff like Morgan and Isaac going to the happiest place on earth! I'm getting jealous!
I am bringing all the essentials this hospitalization. Jonah's tickle me Elmo, Pizza Elmo, Sing with me Elmo, and funny story telling Elmo! Oh and his little red 'Scoot & Zoom'! and perhaps some clothes if they will fit in the bag.
I am bringing all the essentials this hospitalization. Jonah's tickle me Elmo, Pizza Elmo, Sing with me Elmo, and funny story telling Elmo! Oh and his little red 'Scoot & Zoom'! and perhaps some clothes if they will fit in the bag.
Mar 15, 2011
ready to ride
What? I'm NOT in this alone? How did I ever forget about my friends at the Utah Parent Center? They are great advocates! I'm calling in the morning to use their resource. Ahh, life just got a bit better. I called around and got the names and numbers of who the urologist needs to call. I hate feeling sad and defeated. I'm ready to to jump back on the horse! Its not the end of the world. I will get it all figured out. No I'm not drunk, nor bipolar, just needed to get my hair done, and talk to friends. Magic.
Breaking
I hate the feeling of feeling helpless. I hate everything that comes with having a sick child. I am desperate for answers! I want answers as to why he is on the spectrum, why his lungs are so shitty, why he has these new sets of problems that don't even fit in to the lung disease! How can one child have so many BIZARRE problems? Let's face it, there is nothing normal with any of these illnesses! I want him to be normal. I want a "normal" life. I am far from settling that this is it, and this is how it's gonna be. Why am I the only one who isn't settling? Why?
Obviously the urology appointment didn't go well. Just another hours of waisted time. However the new doctor did say that if I get him the phone numbers he would call. I told him that j was being admitted Friday and that I would like him to be started on the Viagra same day as emition so he can have it in his body, as it will take 3-4 days to start working. (the med will be covered while inside the hospital)
Jonah is a nightmare to be around, unless he is sleeping. The combination of being on steroids for the last month and terrible 2's (or 3's) has made him mental. he is being so mean, hitting, spitting, yelling, I could go on but I'm already upset enough about the morning, no need to depress myself with the way my child is acting.
Time to get to work calling the crack head people who decide my child's fate.
Obviously the urology appointment didn't go well. Just another hours of waisted time. However the new doctor did say that if I get him the phone numbers he would call. I told him that j was being admitted Friday and that I would like him to be started on the Viagra same day as emition so he can have it in his body, as it will take 3-4 days to start working. (the med will be covered while inside the hospital)
Jonah is a nightmare to be around, unless he is sleeping. The combination of being on steroids for the last month and terrible 2's (or 3's) has made him mental. he is being so mean, hitting, spitting, yelling, I could go on but I'm already upset enough about the morning, no need to depress myself with the way my child is acting.
Time to get to work calling the crack head people who decide my child's fate.
Mar 14, 2011
Urology: Round 2
Tomorrow morning Mr Jonah and I have an appointment with urology. If you follow me on facebook and my blog you will recall that I'm not a fan of any of these doctors. I fired his last urologist and went on a hunt to find another. I called up to the U of U and was denied to see the doctor that I wanted because "all children need to go through PCMC." I replied, "what if the docs there are not taking care of my child?" She then said that perhaps I could go through another hospital...I don't want another hospital! I want the U of U as it is a research hospital and know one has seen the ***condition*** Jonah has in a child of his age with out having Sickle's disease which he does not have!
In the past 6 days Jonah has had an erection for about 66 hours that I have noticed. Note this is not all in one phase. this is over the course of the 6 days...and counting.
I have a pretty script written out for a med he needs (Viagra) but cannot get it approved. I need someone to fight with me as I am just a parent, I do not hold a medical degree. My letters and phone calls hardly mean a thing. I need the doctor to step up and help me out. Why won't they? His Priapism is causing huge issues in his everyday life. It is sad to watch him so uncomfortable and not have a solution of healing for him. His teachers are concerned, his therapist's are concerned his other doctors are concerned so what the heck is the problem with getting some help from urology? Well these questions will be answered tomorrow! It might be a great appointment, but I'm not holding my breath.
In the past 6 days Jonah has had an erection for about 66 hours that I have noticed. Note this is not all in one phase. this is over the course of the 6 days...and counting.
I have a pretty script written out for a med he needs (Viagra) but cannot get it approved. I need someone to fight with me as I am just a parent, I do not hold a medical degree. My letters and phone calls hardly mean a thing. I need the doctor to step up and help me out. Why won't they? His Priapism is causing huge issues in his everyday life. It is sad to watch him so uncomfortable and not have a solution of healing for him. His teachers are concerned, his therapist's are concerned his other doctors are concerned so what the heck is the problem with getting some help from urology? Well these questions will be answered tomorrow! It might be a great appointment, but I'm not holding my breath.
Mar 13, 2011
At this moment these are a few of my favorite things!
- the way Jonah says water- "arter"
- the treadmill, yes you read it right. The treadmill.
- how independent my kiddos are getting.
- my wonderful friends and family, always there to make me laugh.
- a husband who puts up with my tirades, and split personality disorder
- the little job that I have cleaning a house for some extra cash
- facebook and blogging for helping me escape when I feel the need to leave but still be present.
- A testimony of God and Christ.
- all of the wonderful people who love, really love my Jman (even though they are not blood relatives they are all a part of Jonah's family)
- the great sense of humor that Morgan has, always when I'm not expecting it! (that's the best time to laugh)
- listening to a song I swore was wrote for me, about me, to me. And always an added bonus when it hits my sole to the core and makes me cry.
- burritos from Chipotle ~ hold the rice
- sunny days with the snow high in the mountains. It's one of the most beautiful scenes.
- The blessing to be at home with my kids
- Isaac's job, flight bennie's kick butt!
Mar 12, 2011
Mar 10, 2011
Anxiety
The anxiety is setting in. I suppose it's time to throw back some of those little white tabs. I hope I have a refill!
Jonah will be admitted next Friday. It just kind of snuck up on me. I feel the anxiety onset and asked myself why this is getting me so wound up. The answer: FEAR.
I'm so afraid that this is the admit that he will have to get the central line placed. He had only ONE vein left last clean out and it was teeny tiny and the team was unsure that even that vein would make the IV. Ugh. I know I know kids them placed and life goes on, but come on! Have you met my wild child??? I will just keep praying that a new, beautiful, virgin vein will appear in the midst of the little glowing blue light AKA the vein finder!
Jonah will be admitted next Friday. It just kind of snuck up on me. I feel the anxiety onset and asked myself why this is getting me so wound up. The answer: FEAR.
I'm so afraid that this is the admit that he will have to get the central line placed. He had only ONE vein left last clean out and it was teeny tiny and the team was unsure that even that vein would make the IV. Ugh. I know I know kids them placed and life goes on, but come on! Have you met my wild child??? I will just keep praying that a new, beautiful, virgin vein will appear in the midst of the little glowing blue light AKA the vein finder!
Mar 8, 2011
Mar 5, 2011
Fun fun family day!
The kids had such a great day, I wish all of our saturdays were this much fun.
We were invited by a special needs goup we are apart of (Hopekids) to go to a family day, at Hollywood connections. Morgan was a little skeptical at first as the first ride we went on was the merry-go-round. Jonah loved it, but morgan prefered to stand with Isaac and I, holding to the poles. By the end of our time there, Morgan was begging to go on the roller coaster again! Im glad they had fun...We did too! Next week (with the same group) Morgan and I are going to go see Disney on Ice. I am very much looking forward to that!
Jonah is doing better. He is on a ton of steroids but tonight I will start the wene. He had issues with his breathing a couple days ago and then it got so bad he was sent home from school on Wednesday. I tried to manage it myself but by thursday I gave up and called the doctor. It seems as Jonah has got some issues wit hreguards to the steroids. He was on a tiny dose from when he had RSV but the slightest change sent him over board. He was having withdrals. But like I said we will start the wne again tonight and I will call the doc to check in with her on Monday to see what the next dose will be. Hopefully it wil be the smaller dose instead of a larger.
Jonah is doing better. He is on a ton of steroids but tonight I will start the wene. He had issues with his breathing a couple days ago and then it got so bad he was sent home from school on Wednesday. I tried to manage it myself but by thursday I gave up and called the doctor. It seems as Jonah has got some issues wit hreguards to the steroids. He was on a tiny dose from when he had RSV but the slightest change sent him over board. He was having withdrals. But like I said we will start the wne again tonight and I will call the doc to check in with her on Monday to see what the next dose will be. Hopefully it wil be the smaller dose instead of a larger.
Mar 3, 2011
Maggie Agnew
I went to the viewing for sweet Maggie. Inside this little church there was so much love. This is one little girl who made a lasting impact on many. The table's were covered in pink daises, lolly pops, binkies and of course the most beautiful pictures of this sweet little angel... Maggie will be missed by many. A smile so contagious will forever be engraved in my heart.
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