Like the title of my post reads "I am full of good news!" Hmm, what should I share first...
Okay, Well On Saturday 1/23/10 my sweet sweet son started to walk. Yes folks, he's walking! it was so funny, I started doing therapy like we do every morning, played the same games that we play every morning but that day was just different. For one he was not his fussy steroid attitude self. He was actually happy, and wanted to do Physical therapy. So I sat on the Ottoman and Jonah stood in front of me, and slowly I kept backing up, so that he could stand with no help....I wasn't trying to get him to walk, just balance himself. He took one step, then two, then he was at the couch again so I pulled him back totally impressed and decided to make it longer and people this fighter walked a whopping 6 steps! I was so amazed! Jonah is walking, I just kept yelling it in my super excited high pitched voice, in hope Isaac )who was in the shower) would hear me. When he finally got the message he jumped out to watch our little miracle take his new steps with out any assistance. however, now that I know he can walk, he still prefers the comfort of using his walker.
My second great Fabulous, Christmas present feeling news is that We got the results back from Jonah's MRI. The nurse who is also a great friend read them to me over the phone. I was in shock and so happy to hear that everything on his MRI was NORMAL! I didn't fully believe it so she read it again. OHHH! If I could transport this feeling that I got to each one of you, you too would be over come by emotion. It was so wonderful to hear. I still remind myself daily what a miracle this boy is. he is so amazing to me, and so inspirational.
Jan 28, 2010
Jan 15, 2010
Medical mommies, I have a question???
Wow! What a week! This week we have been swamped with medical appointments. However we did get those 2 big appontments out of the way. Yesterday Jonah had his Psych eval, and hearing rechecked, and today he had the MRI of his brain done. Let me tell you...It's been a week for me! I am glad to see this week coming to an end. I have to recharge because next week is filling up on my calendar, it looks like we will have only one day appointment free.
To all you other medical mommies;How do you do it? What kind of schedual do you have and what works best?
To all you other medical mommies;How do you do it? What kind of schedual do you have and what works best?
Jan 14, 2010
Jan 13, 2010
It's been 2 Years!
2 years ago today Jonah was brought into the ER at PCMC. Little did I know then, that our lives would forever be changed. He had caught RSV at only 13 weeks old. I was so new to the medical world, I remember excusing myself while they threaded a long suction tube down his nose to suck out mucus, to help him breath. Little did I know I would one day own that machine and would be expected to do this on a daily basis. Jonah was admitted and thats the begining to his stroy. After 3 failed sweat tests and one failed genetic testing Jonah and I went to Dr. Deterding a pulmonary specialist and there he was diagnosed with having non CF-Bronchiectasis. This is only the lung disease of Cystic Fibrosis.
Ironically Jonah is sick again this week. He went to the dr where the dr suspects that Jonah once again has RSV. The dr had said that if J never got the Synagis shots, he would most likely be back in the PICU. Looks like we've dodged a bullet!
Ironically Jonah is sick again this week. He went to the dr where the dr suspects that Jonah once again has RSV. The dr had said that if J never got the Synagis shots, he would most likely be back in the PICU. Looks like we've dodged a bullet!
Jan 4, 2010
Sledding and other Breaking News
A few weeks ago Isaac and I took the kids sledding. We had a lot of fun! Here are a few pics that we snapped while going up and down the hill. Both kiddos had a blast. We even sent Morgan and Jonah down all by themselves! My favorite is the one with Morgan pulling the sled and Jonah trying not to fall out!
***Jonah update: Jonah is sick once again. I was blaming it on the bad air quality that we in northern Utah have been suffering from, but now he is running a temp and non stop runny nose. He is back on steroids, and slept off and on through the night
I can't stop laughing! It was that funny.
Weee, Isaac and I had as much fun as the kids!
***Jonah update: Jonah is sick once again. I was blaming it on the bad air quality that we in northern Utah have been suffering from, but now he is running a temp and non stop runny nose. He is back on steroids, and slept off and on through the night
I can't stop laughing! It was that funny.
Weee, Isaac and I had as much fun as the kids!
Jan 2, 2010
New year... New Everything!
Happy 2010! I am very much looking forward to this year. I have spent to much time dwelling on things I can not change. This year I will stay focused on only things that I do have control over.
I would like to now let go of my guilt. I have so much guilt that I tease sometimes that I should be Catholic and not Mormon. Well I am saying good bye. I am releasing all of it to the universe, and going to be positive that I will not let it creep back into my life. We all have guilt but I may stretch mine out and I loose much sleep over it. So Good bye Guilt! My biggest and hardest thing to get over is the fact that I blame myself for Jonah being sick. Urr, I'm getting emotional just letting those words out. Yes I did bring him to daycare but many parents do that. Perhaps it was just one of those things, wrong time wrong place. I will never know, but I cant go back and make any thing different. ITS NOT MY FAULT...that's my new mantra!
I was hoping to post some pics but for what ever reason I am incapable of posting pics from my lap top and so I must use my desk top...and well its just inconvenient. I will however get to it by Monday...promise!
We had such an amazing Christmas. Isaac for the first time in 3 years had Christmas off. I had the Christmas that I fantasize about. The Christmas where it's not about presents but about family, stories, traditions and FOOD! Oh and of course those Christmas miracles... A few days before Christmas I was running Jonah's vest and Isaac was putting Morgan to bed and we heard a loud knock on the door. I went out and no one was there. I looked down and there was a white envelope with our last name on it. I got Isaac and we opened it and found over $100 in cash. How amazing is that? Then On Christmas eve we had received more Christmas love. Isaac and I have been raking our brains to figure out who would do this for us, We then decided to just be grateful and thankful that we have so many wonderful people in our lives we couldn't choose who would do this for us. So If you were the family or friend, please know that we are so thankful.
Jonah has been doing so well! I am so excited for all of the new stuff he is doing. I am determined to make sure Jonah beats the odds! DETERMINED! So... what is he doing? Well he is doing really well with his receptive language. I say where's your nose he points to his nose...(in slow motion) Then I can ask him to get his walker and he comes down the hall pushing his walker! These small things are wonderful things and are large blessings in our life! He was off of oxygen for about 5 days, but this last boast of crappy air has sent him back on it...its always good while it lasts.
Morgan goes back to preschool on Monday! thank goodness, this girl is crazy. I love her to pieces but I get so worn out with doing this then that then back to this..ugg the life of a 3 year old who thinks shes 12...some of you understand I'm sure. Her new must have is her which hat. Yes people I go through grocery stores, walks around the block, even short car rides with my Morgan wearing a black pointed which hat. when you ask her if she is a which she will tell you no, that she is a which robot astronaut. She always makes me laugh!
I would like to now let go of my guilt. I have so much guilt that I tease sometimes that I should be Catholic and not Mormon. Well I am saying good bye. I am releasing all of it to the universe, and going to be positive that I will not let it creep back into my life. We all have guilt but I may stretch mine out and I loose much sleep over it. So Good bye Guilt! My biggest and hardest thing to get over is the fact that I blame myself for Jonah being sick. Urr, I'm getting emotional just letting those words out. Yes I did bring him to daycare but many parents do that. Perhaps it was just one of those things, wrong time wrong place. I will never know, but I cant go back and make any thing different. ITS NOT MY FAULT...that's my new mantra!
I was hoping to post some pics but for what ever reason I am incapable of posting pics from my lap top and so I must use my desk top...and well its just inconvenient. I will however get to it by Monday...promise!
We had such an amazing Christmas. Isaac for the first time in 3 years had Christmas off. I had the Christmas that I fantasize about. The Christmas where it's not about presents but about family, stories, traditions and FOOD! Oh and of course those Christmas miracles... A few days before Christmas I was running Jonah's vest and Isaac was putting Morgan to bed and we heard a loud knock on the door. I went out and no one was there. I looked down and there was a white envelope with our last name on it. I got Isaac and we opened it and found over $100 in cash. How amazing is that? Then On Christmas eve we had received more Christmas love. Isaac and I have been raking our brains to figure out who would do this for us, We then decided to just be grateful and thankful that we have so many wonderful people in our lives we couldn't choose who would do this for us. So If you were the family or friend, please know that we are so thankful.
Jonah has been doing so well! I am so excited for all of the new stuff he is doing. I am determined to make sure Jonah beats the odds! DETERMINED! So... what is he doing? Well he is doing really well with his receptive language. I say where's your nose he points to his nose...(in slow motion) Then I can ask him to get his walker and he comes down the hall pushing his walker! These small things are wonderful things and are large blessings in our life! He was off of oxygen for about 5 days, but this last boast of crappy air has sent him back on it...its always good while it lasts.
Morgan goes back to preschool on Monday! thank goodness, this girl is crazy. I love her to pieces but I get so worn out with doing this then that then back to this..ugg the life of a 3 year old who thinks shes 12...some of you understand I'm sure. Her new must have is her which hat. Yes people I go through grocery stores, walks around the block, even short car rides with my Morgan wearing a black pointed which hat. when you ask her if she is a which she will tell you no, that she is a which robot astronaut. She always makes me laugh!
Dec 16, 2009
here is the update
I am getting so excited For Christmas! We debated putting up our tree, at the time I was just feeling a little bit humbuggish....I am so glad we did, I am now filled with the Christmas spirit.
Finals are finished! I am so proud of myself for finishing my first semester. Woohoo! Only four more to go...
So here is the part I have been putting off, and trying to dodge. It's a tough topic for me to discuss so perhaps it's just better to write it and not have to tell everyone individually. Though it may not seeem to be a big deal to some, keep in mind that if it were your child you may feel the same way.
A few weeks ago we went to a follow up with J's lung doctor. She had some great concerns about Jonah and his development. Jonah does display some signs of being autistic, though he is NOT autistic...he has been placed on the spectrum due to so many similarities with Autistic children. Examples being, banging his head, sensory intergration problems, high pitched squeal, clapping, hand flapping,and finally not talking. (though he does do some babbling) I have known for a while that something was not right with Jonah, but nothing could prepare you for a doctor, a doctor whome you have grown to love and trust tells you this, "I think Jonah may have suffered some brain damage, for lack of a better term" My heart fell right onto the floor, along with any hopes I had for Jonah. She explained herself "Jonah almost died, they wanted to withdrawl all support from him Jessica, when a child is that sick and has CO2 levels as high as 200-205 you don't leave that state without any problems, Most children I have seen who have been that close to death do have brain development issues. I feel this is the case with Jonah. I think it's time to meet with a neurologist."
I waited a few days, I cried a few days, then I called and set up an appointment. I was schedualed for some time in January. My good friend/nurse at our FP dr called in a rescedualed it for December 14th (Monday)I was so ready to call the whole thing off. I am at this point so overwhelmed. I talked to a friend and decided it needs to be done. Jonah and I went up to the hospital and met with the doctor. Jonah was so well behaved I was affraid the doctor would not be able to see what Jonah ndoes or how he acts...I was so surprised. The doctor told me he definatley thinks there is something going on and would like Jonah to have an MRI of his brain. He said that what the lung doctor had said makes perfect sense. He also felt that Jonah was showing signs of ADD, but said accurate testing cannot be performed this young and when J starts school he should be tested. The doctor said some stuff that just left me feeling empty, he spoke of long term whether or not Jonah would be able to live independently or not, whether or not he has some strange disease called "storage disease. He left the room to make a follow up apointment and my head was spinning! I could have just lost it, but I didn't. I picked up Jonah brought him to the window that looked over the Salt Lake Valley, sat him on the window seal and just held him tight. I came to this reasoning, (as Jonah continuosly banged his head against the glass) I cannot change Jonah, He is who he is. All I can do is Love him and make sure he is given an equal chance in life. No matter what I will always fight for him and make sure he is getting all support that he will need to live a real life. After I made that commitment this all seemed so much more doable. Im not saying it's easy, it's not. Im not sayingh my heart is healed, it's not. Im saying that I know as a family we will make it through. With all of the support I have I will make it through.
Finals are finished! I am so proud of myself for finishing my first semester. Woohoo! Only four more to go...
So here is the part I have been putting off, and trying to dodge. It's a tough topic for me to discuss so perhaps it's just better to write it and not have to tell everyone individually. Though it may not seeem to be a big deal to some, keep in mind that if it were your child you may feel the same way.
A few weeks ago we went to a follow up with J's lung doctor. She had some great concerns about Jonah and his development. Jonah does display some signs of being autistic, though he is NOT autistic...he has been placed on the spectrum due to so many similarities with Autistic children. Examples being, banging his head, sensory intergration problems, high pitched squeal, clapping, hand flapping,and finally not talking. (though he does do some babbling) I have known for a while that something was not right with Jonah, but nothing could prepare you for a doctor, a doctor whome you have grown to love and trust tells you this, "I think Jonah may have suffered some brain damage, for lack of a better term" My heart fell right onto the floor, along with any hopes I had for Jonah. She explained herself "Jonah almost died, they wanted to withdrawl all support from him Jessica, when a child is that sick and has CO2 levels as high as 200-205 you don't leave that state without any problems, Most children I have seen who have been that close to death do have brain development issues. I feel this is the case with Jonah. I think it's time to meet with a neurologist."
I waited a few days, I cried a few days, then I called and set up an appointment. I was schedualed for some time in January. My good friend/nurse at our FP dr called in a rescedualed it for December 14th (Monday)I was so ready to call the whole thing off. I am at this point so overwhelmed. I talked to a friend and decided it needs to be done. Jonah and I went up to the hospital and met with the doctor. Jonah was so well behaved I was affraid the doctor would not be able to see what Jonah ndoes or how he acts...I was so surprised. The doctor told me he definatley thinks there is something going on and would like Jonah to have an MRI of his brain. He said that what the lung doctor had said makes perfect sense. He also felt that Jonah was showing signs of ADD, but said accurate testing cannot be performed this young and when J starts school he should be tested. The doctor said some stuff that just left me feeling empty, he spoke of long term whether or not Jonah would be able to live independently or not, whether or not he has some strange disease called "storage disease. He left the room to make a follow up apointment and my head was spinning! I could have just lost it, but I didn't. I picked up Jonah brought him to the window that looked over the Salt Lake Valley, sat him on the window seal and just held him tight. I came to this reasoning, (as Jonah continuosly banged his head against the glass) I cannot change Jonah, He is who he is. All I can do is Love him and make sure he is given an equal chance in life. No matter what I will always fight for him and make sure he is getting all support that he will need to live a real life. After I made that commitment this all seemed so much more doable. Im not saying it's easy, it's not. Im not sayingh my heart is healed, it's not. Im saying that I know as a family we will make it through. With all of the support I have I will make it through.
Dec 14, 2009
Pleasee re-post
This is so wonderful. I am reposting it. If you or any one you know might be interested please submit them to this web site
I am giving away a free shoot to a family/person who really needs it. It will be a regular shoot, plus 20 photos at high resolution on a CD. This will be going to a family in need and who you think deserves it above anyone else. If you have a candidate for this shoot email me (littlemischiefsstudios@yahoo.com) why you think that they deserve this shoot and on January 17 2010 I will be announcing the winner. This is for anyone in the entire state of Utah. Please try to think about someone who may really need this.
littlemischiefsstudios.com
littlemislchiefsstudios.blogspot.com
becky
I am giving away a free shoot to a family/person who really needs it. It will be a regular shoot, plus 20 photos at high resolution on a CD. This will be going to a family in need and who you think deserves it above anyone else. If you have a candidate for this shoot email me (littlemischiefsstudios@yahoo.com) why you think that they deserve this shoot and on January 17 2010 I will be announcing the winner. This is for anyone in the entire state of Utah. Please try to think about someone who may really need this.
littlemischiefsstudios.com
littlemislchiefsstudios.blogspot.com
becky
Dec 9, 2009
just a quick note
I know I have not posted in a while. To much is going on with some new information we have received regarding Jonah. I am just waiting to get some stuff in order and my emotions tamed before I really get into all of it. My plate has runeth over!
I did however want to share some pics that my best friend took of the kiddos and our family. She is by far the best photographer I have ever gone to. She has done all of our photos since we had children. Follow the LINK and see the cuteness! Becky and I have been friends since our journey in Utah began. I love her and her family as if they were my family. I am so proud of her as this is her dream. To be a fabulous photographer who captures the innocence.
* Just a quick plug...she is using her talents to bless a family who would enjoy the benefits of a free photo shoot of their family. If you know of a family or you are the family, who has been through alot, submit your nomination to Little mischiefs studios.
Just a quick side note... My address book has gone MIA, I need addresses to send out Christmas cards...Email them to me if you would. I would also love the addresses of some of our new friends!! Thanks every one! Jesscaandrews@yahoo.com
~Remember there is no "i" in the jessica part~
I did however want to share some pics that my best friend took of the kiddos and our family. She is by far the best photographer I have ever gone to. She has done all of our photos since we had children. Follow the LINK and see the cuteness! Becky and I have been friends since our journey in Utah began. I love her and her family as if they were my family. I am so proud of her as this is her dream. To be a fabulous photographer who captures the innocence.
* Just a quick plug...she is using her talents to bless a family who would enjoy the benefits of a free photo shoot of their family. If you know of a family or you are the family, who has been through alot, submit your nomination to Little mischiefs studios.
Just a quick side note... My address book has gone MIA, I need addresses to send out Christmas cards...Email them to me if you would. I would also love the addresses of some of our new friends!! Thanks every one! Jesscaandrews@yahoo.com
~Remember there is no "i" in the jessica part~
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