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.
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