Dec 28, 2010
A Mom Talks with the Director of Special Education
Okay my special needs mom's, you know this is funny!
Dec 25, 2010
Merry Christmas
Merry Christmas friends. Christmas has always been my most favorite Holiday. But this year has been amazing. I have lots to be thankful for, and as I sat on the floor playing my 4Th game of operation with my kids I embraced all of those blessings. I am grateful for my family. I am grateful for the opportunity to be here in California and celebrate this wonderful day with my family, and the family that lives in the area.
Last night we went up to the Santa Cruz mountains and had a wonderful dinner with Isaac's father and his new wife Kristy. Earlier we traveled to my grandparents house to have an afternoon full of food, laughter and memories. There were five generations in one room. How special is that?
Jonah has been doing well here, but still on oxygen. We have him on intermittently due to his fluctuating oxygen needs. I have seen his lips go blue a few times this morning so I know something is going on. Tomorrow we will be traveling 14 hours back to Utah. I feel safe there knowing that Jonah has an amazing doctor that always makes time to see him if needed.
Morgan is in 7Th heaven as Santa brought her everything her little 4 year old heart desired, but Mommy & Daddy took full credit for the lady bug pillow pet!!!
Our vacation has been long, due to all the illness my little family has been hit with in such a short amount of time. We were unable to do alot of things that we had planned, but I guess next time when we are out here we will have other opportunities.
I hope that you all have a very Merry Christmas!
Much love from our family to yours!
Last night we went up to the Santa Cruz mountains and had a wonderful dinner with Isaac's father and his new wife Kristy. Earlier we traveled to my grandparents house to have an afternoon full of food, laughter and memories. There were five generations in one room. How special is that?
Jonah has been doing well here, but still on oxygen. We have him on intermittently due to his fluctuating oxygen needs. I have seen his lips go blue a few times this morning so I know something is going on. Tomorrow we will be traveling 14 hours back to Utah. I feel safe there knowing that Jonah has an amazing doctor that always makes time to see him if needed.
Morgan is in 7Th heaven as Santa brought her everything her little 4 year old heart desired, but Mommy & Daddy took full credit for the lady bug pillow pet!!!
Our vacation has been long, due to all the illness my little family has been hit with in such a short amount of time. We were unable to do alot of things that we had planned, but I guess next time when we are out here we will have other opportunities.
I hope that you all have a very Merry Christmas!
Much love from our family to yours!
Dec 22, 2010
My Song
on the first month of the new year my true love gave to me, a house hold where everyone was healthy!
On the second month of the new year my true love gave to me, a son who was in the ER 4 times by the end of Feb-u-ary!
On the third month of the new year my true love gave to me, My beautiful little Morgan who was no longer 3!
On the fourth month of the new year my true love gave to me, A mini vacation to the S. C. (Santa Cruz, CA)
On the fifth month of the new year my true love gave to me, past memories of his loving Grammy. (Who we miss so much)
On the sixth month of the new year my true love gave to me, summer fun at the pool which made us all happy
ON THE SEVENTH MONTH OF THE new year my true love gave to me, Frustrations up at PCMC! (ok, so it wasn't his fault!)
On the eighth month of the new year my true love gave to me, Our first date night since Jonah's diagnos-y!
On the ninth month of the new year my true love gave to me, Something to write about for my 200Th post on my blog-gy!
On the tenth month of the new year my true love gave to me, a wonderful harvest from our gardening!
On the eleventh month of the new year my true love gave to me Morgan winning all of us at the wii!
On the twelfth month of the new year my true love gave to me, a whole week spent with the family in Cali!!!
MERRY CHRISTMAS to all our friends and Family!
On the second month of the new year my true love gave to me, a son who was in the ER 4 times by the end of Feb-u-ary!
On the third month of the new year my true love gave to me, My beautiful little Morgan who was no longer 3!
On the fourth month of the new year my true love gave to me, A mini vacation to the S. C. (Santa Cruz, CA)
On the fifth month of the new year my true love gave to me, past memories of his loving Grammy. (Who we miss so much)
On the sixth month of the new year my true love gave to me, summer fun at the pool which made us all happy
ON THE SEVENTH MONTH OF THE new year my true love gave to me, Frustrations up at PCMC! (ok, so it wasn't his fault!)
On the eighth month of the new year my true love gave to me, Our first date night since Jonah's diagnos-y!
On the ninth month of the new year my true love gave to me, Something to write about for my 200Th post on my blog-gy!
On the tenth month of the new year my true love gave to me, a wonderful harvest from our gardening!
On the eleventh month of the new year my true love gave to me Morgan winning all of us at the wii!
On the twelfth month of the new year my true love gave to me, a whole week spent with the family in Cali!!!
MERRY CHRISTMAS to all our friends and Family!
Dec 16, 2010
10 days people
Jonah is doing tons better from his little episode Monday. Though there has been some issues with secretions or "plugs" he has been able to clear them on his own with a good strong cough. I have been doing meds around the clock and will continue to do so till he is on his base line of oxygen needs. His energy level is back up but he is still a wee bit pale, but... today Jonah started eating by mouth, and we love to see that!
I have been running crazy today! I can't believe Christmas is just 10 days away, so much to do before then. I'm wondering if I stop, breath and really really think hard if I truly believe... Will Santa just take care of it all??? I finally made it to Costco to get our Christmas cards printed off, and they will be ready and picked up tomorrow. I asked for the envelopes so that I could address them all tonight.
We are going to be heading back to California for Christmas and Morgan is elated! She loves going to California for many reasons but her favorite one would be because she gets SPOILED rotten by grandparents due to the fact she is the only girl on both side of the family. Unfortunately we will be driving. This way we can drive out the O's for Mr.J and he will have it when we go to Cali though out 2011.
I have been running crazy today! I can't believe Christmas is just 10 days away, so much to do before then. I'm wondering if I stop, breath and really really think hard if I truly believe... Will Santa just take care of it all??? I finally made it to Costco to get our Christmas cards printed off, and they will be ready and picked up tomorrow. I asked for the envelopes so that I could address them all tonight.
We are going to be heading back to California for Christmas and Morgan is elated! She loves going to California for many reasons but her favorite one would be because she gets SPOILED rotten by grandparents due to the fact she is the only girl on both side of the family. Unfortunately we will be driving. This way we can drive out the O's for Mr.J and he will have it when we go to Cali though out 2011.
Dec 13, 2010
Oh what fun it is to ride in a one horse open sleigh! ...Or ambulance
My eyes feel like they are buldging out of my head, my nose is dripping like a faucet and I can't stop sneezing. I don't feel good. I had a final in my math class that I missed and now Im stressing that my profesor is going to give me an incomplete because I was a no- show.
Why was I a no-show???
My Jonah was a sick kid today and was ambulanced up to the children's hospital from his pediatritians office.
His ped just called me. How sweet is that? It's like 9:00pm! She just informed me that his results from the VRP are back and indeed he has Influenza A or H1N1... We will need to wait 48 hours to see what the cultures are. Fun!
I am beat so Im headed off to bed, I am on med duty every 3 hours through the night to help nurse this kid back to health. Nothing worse then having a sick child. I love him so so so much.
Why was I a no-show???
My Jonah was a sick kid today and was ambulanced up to the children's hospital from his pediatritians office.
His ped just called me. How sweet is that? It's like 9:00pm! She just informed me that his results from the VRP are back and indeed he has Influenza A or H1N1... We will need to wait 48 hours to see what the cultures are. Fun!
I am beat so Im headed off to bed, I am on med duty every 3 hours through the night to help nurse this kid back to health. Nothing worse then having a sick child. I love him so so so much.
Dec 8, 2010
statistics
Since January of 2010
Morgan has grown 3in (putting her at 50th % on the chart..up 25% from Jan)
Jonah has grown 2in (putting him at 32in long... still not on the chart)
Morgan has gained 5 lbs (sitting pretty on the 75% mark. Following her curve to a T!)
Jonah has gained 3 lbs (weighing in at 28 lbs!)
We had an appointment today and I got the low down. Morgan is very sick. Sick kids are never fun, however I seem to funtion better as a nurse when Jonah is sick, and get super nervous when Its Morgan who is sick. I just don't know how the rules for a healthy, sick child. When is the temp to high? What do I do with her? Is letting her just lay on my bed and watch TV till her eyes roll back ok? Is 7up good for every illness or just stomach issues?
I'm Cluless!Seriously folks, CLUELESS!
Morgan has grown 3in (putting her at 50th % on the chart..up 25% from Jan)
Jonah has grown 2in (putting him at 32in long... still not on the chart)
Morgan has gained 5 lbs (sitting pretty on the 75% mark. Following her curve to a T!)
Jonah has gained 3 lbs (weighing in at 28 lbs!)
We had an appointment today and I got the low down. Morgan is very sick. Sick kids are never fun, however I seem to funtion better as a nurse when Jonah is sick, and get super nervous when Its Morgan who is sick. I just don't know how the rules for a healthy, sick child. When is the temp to high? What do I do with her? Is letting her just lay on my bed and watch TV till her eyes roll back ok? Is 7up good for every illness or just stomach issues?
I'm Cluless!Seriously folks, CLUELESS!
Dec 7, 2010
time to Blog
I have been neglecting my blog. I guess time is just getting away. I have so much going on. I have to remember to keep my blog up as it is a journal of my thoughts, memories, sane and insane times of my life.
Jonah's med schedule is crazy but I am fearful that if I don't keep up with it he will be hospitalized again with no notice. The air quality has been horrible in Salt Lake. I have been doing my best to keep him inside and this past weekend we escaped to Santa Cruz Ca to visit the grandparents. He seemed to be doing well, but today as I dropped him off to the school bus I noticed his top lip was grey-ish. Upped his oxygen and he was good to go.
Yesterday Morgan and I went to the American Red Cross so I could donate blood. She was disgusted to say the least. Her little head could not wrap around the idea of sharing blood. She's so funny. Morgan has also been doing such a great job in school. When she writes her name you can really read it and see that she wrote Morgan. She is also singing lot's of song's in Spanish thanks to her favorite singer, Dr.Jean!
I have finals on Monday. Eeek! I'm not ready. I guess I will spend Lot's of time studying this weekend. I guess instead of trying to save some money by grooming my dog myself, I should have been practicing crazy algebra problems.
Jonah's med schedule is crazy but I am fearful that if I don't keep up with it he will be hospitalized again with no notice. The air quality has been horrible in Salt Lake. I have been doing my best to keep him inside and this past weekend we escaped to Santa Cruz Ca to visit the grandparents. He seemed to be doing well, but today as I dropped him off to the school bus I noticed his top lip was grey-ish. Upped his oxygen and he was good to go.
Yesterday Morgan and I went to the American Red Cross so I could donate blood. She was disgusted to say the least. Her little head could not wrap around the idea of sharing blood. She's so funny. Morgan has also been doing such a great job in school. When she writes her name you can really read it and see that she wrote Morgan. She is also singing lot's of song's in Spanish thanks to her favorite singer, Dr.Jean!
I have finals on Monday. Eeek! I'm not ready. I guess I will spend Lot's of time studying this weekend. I guess instead of trying to save some money by grooming my dog myself, I should have been practicing crazy algebra problems.
Nov 23, 2010
Home
It's about time I spill the update of our lives...Wow, that sounded much more exciting then it really is.
Well folks, my sweet urrr... wrong word. My adorable lil guy is back home! Sunday was the day. Jonah had his last dose of steroids and antibiotic, both which had to run through his PICC line, before he was discharged. I have to admit that this was my favorite hospitalization Jonah has ever had to go through. He had great residents (except for that one) a great attending and super wonderful nurses and respiratory therapists! We celebrated Jonah going home by bring cup cakes to the Rn's and Ice cream sandwiches to the RT's. He was there for 11 days, and these wonderful people made it zip by. Jonah turned on the charm like he does so well. He started out by blowing kisses to all the hospital staff, oh and some passer-buyers too. He ended his stay by casting spells on EVERYBODY! He finds so much joy in making others laugh!
Jonah is resuming all of his normal meds that he was already on and we have added the Viagra like I had previously mentioned and Gentian Violet because he got thrush from so much antibiotics.. He is doing so good! While he was at the hospital words just started coming to him. He says about 8-9words. Some of them he can say good and others he is struggling with, but who cares? He is starting to talk! I am so elated, I know how much he has been through, and this is so exciting for him as well.
Tonight we, in Utah are being hit with a blizzard so Isaac dug out the tree and decorations and as a family we decorated, laughed, and laughed some more at Jonah, as he put all his ornament's on the same branch directly on top of the others. Very cute.
Well folks, my sweet urrr... wrong word. My adorable lil guy is back home! Sunday was the day. Jonah had his last dose of steroids and antibiotic, both which had to run through his PICC line, before he was discharged. I have to admit that this was my favorite hospitalization Jonah has ever had to go through. He had great residents (except for that one) a great attending and super wonderful nurses and respiratory therapists! We celebrated Jonah going home by bring cup cakes to the Rn's and Ice cream sandwiches to the RT's. He was there for 11 days, and these wonderful people made it zip by. Jonah turned on the charm like he does so well. He started out by blowing kisses to all the hospital staff, oh and some passer-buyers too. He ended his stay by casting spells on EVERYBODY! He finds so much joy in making others laugh!
Jonah is resuming all of his normal meds that he was already on and we have added the Viagra like I had previously mentioned and Gentian Violet because he got thrush from so much antibiotics.. He is doing so good! While he was at the hospital words just started coming to him. He says about 8-9words. Some of them he can say good and others he is struggling with, but who cares? He is starting to talk! I am so elated, I know how much he has been through, and this is so exciting for him as well.
Tonight we, in Utah are being hit with a blizzard so Isaac dug out the tree and decorations and as a family we decorated, laughed, and laughed some more at Jonah, as he put all his ornament's on the same branch directly on top of the others. Very cute.
Nov 17, 2010
update
We decided to go with using the Viagra. I'm still unsure about the decision, but the doctors had good reasoning for starting it now while he is under 24 hour care. He will be on a 6 week trial and we will just document the course.
Yesterday was turn around day for Mr.Jonah! He got down to his base line of .25 Lt of oxygen, but only for a moment as his lips turned blue within minutes. He was boosted up to a half liter and there he sat comfy for the rest of the day. At night he was turned back up to a full liter.
It's a good possibility that Jonah will be able to come home soon. Earliest will be Sunday!
Yesterday was turn around day for Mr.Jonah! He got down to his base line of .25 Lt of oxygen, but only for a moment as his lips turned blue within minutes. He was boosted up to a half liter and there he sat comfy for the rest of the day. At night he was turned back up to a full liter.
It's a good possibility that Jonah will be able to come home soon. Earliest will be Sunday!
Nov 15, 2010
Today has been interesting!
Where to start...
Jonah is still in the hospital and will be till some time next week, but the Dr's have assured me that he will not be in here for Thanksgiving. Feww, because my family will be having Thanksgiving with us in Utah! Jonah is up to his old tricks. Today he pulled out his G button (feeding tube) and just looked at me like "wow mom, did you see that?" He didn't even cry, he is strange. I think he likes to keep us all on our toes. So funny!
Jonah has a strange diagnosis, one that I have not posted about and have shared with only a few. I would continue to keep it to myself only, I have tried to do research on it and have found it impossible to find other kiddos with this same diagnosis. I will be the first, in hopes that other parents might come across my blog on google and respond, or perhaps get answers for their child.
Jonah has Priapism. In English this means that Jonah has prolonged erections. This has been going on for the past 6 or 7 months. We have seen two urologists and until today we haven't gotten very far. we have taken him off meds that might be causing it but nothing changed. I went to the Dr's last Monday for this but the breathing freaked everyone out and once again this was put on the back burner. When he was admitted I brought it up and said I wanted to see a urologist in house to have a few procedures done. One being a cap gas.
A cap gas is a blood with drawl that measures the oxygen exchange in the blood. So yes, Jonah had blood withdrawn from his penis. It was sad. He cried, I cried, I cried even more when I saw the bruises on his little pee pee. The test came back at regular numbers. This is good...Kind of. It tells us that he is not having any tissue damage, and will be fine later on in life ;) However this does not give us anymore information, like why this is happening and so on. His longest erection has been 14 hours.
The urologist seems overly excited about this case as he has never seen this is a young child, and he too can find zilch information on the topic. He is now working with an adult urologist from the University hospital. This is what they came up with: Jonah has a diagnosis of stuttering priapism. The options are: let it be and do nothing, which is what we have been doing but this causes many problems with his everyday routine as he can't walk or even pay attention to anything else. OR we can start him on a daily dose of Viagra. Yes, Viagra. I know this sounds strange I too questioned it as it seems Viagra is suppose to start an erection, I guess you can also use it to cure one. If we decide to do this he will need to take it daily. This may or may not work due to the lack of children suffering with no reasoning behind the priapism. I'm not sure what to do as of right now, no decision has been made on our behalf.
Not much has changed for Jonah in regards to his health. All tests have come back negative for viruses or bacteria. This leads his doctor's to believe that it is his lung disease: Non-CF Bronchiectasis. This is not good. It makes me feel sick. I have worked so hard at trying to keep his lungs "good!" He will have a CT on Friday to see what new damage is occurring.
Please keep this handsome fellow in your thoughts and prayer's.
Jonah is still in the hospital and will be till some time next week, but the Dr's have assured me that he will not be in here for Thanksgiving. Feww, because my family will be having Thanksgiving with us in Utah! Jonah is up to his old tricks. Today he pulled out his G button (feeding tube) and just looked at me like "wow mom, did you see that?" He didn't even cry, he is strange. I think he likes to keep us all on our toes. So funny!
Jonah has a strange diagnosis, one that I have not posted about and have shared with only a few. I would continue to keep it to myself only, I have tried to do research on it and have found it impossible to find other kiddos with this same diagnosis. I will be the first, in hopes that other parents might come across my blog on google and respond, or perhaps get answers for their child.
Jonah has Priapism. In English this means that Jonah has prolonged erections. This has been going on for the past 6 or 7 months. We have seen two urologists and until today we haven't gotten very far. we have taken him off meds that might be causing it but nothing changed. I went to the Dr's last Monday for this but the breathing freaked everyone out and once again this was put on the back burner. When he was admitted I brought it up and said I wanted to see a urologist in house to have a few procedures done. One being a cap gas.
A cap gas is a blood with drawl that measures the oxygen exchange in the blood. So yes, Jonah had blood withdrawn from his penis. It was sad. He cried, I cried, I cried even more when I saw the bruises on his little pee pee. The test came back at regular numbers. This is good...Kind of. It tells us that he is not having any tissue damage, and will be fine later on in life ;) However this does not give us anymore information, like why this is happening and so on. His longest erection has been 14 hours.
The urologist seems overly excited about this case as he has never seen this is a young child, and he too can find zilch information on the topic. He is now working with an adult urologist from the University hospital. This is what they came up with: Jonah has a diagnosis of stuttering priapism. The options are: let it be and do nothing, which is what we have been doing but this causes many problems with his everyday routine as he can't walk or even pay attention to anything else. OR we can start him on a daily dose of Viagra. Yes, Viagra. I know this sounds strange I too questioned it as it seems Viagra is suppose to start an erection, I guess you can also use it to cure one. If we decide to do this he will need to take it daily. This may or may not work due to the lack of children suffering with no reasoning behind the priapism. I'm not sure what to do as of right now, no decision has been made on our behalf.
Not much has changed for Jonah in regards to his health. All tests have come back negative for viruses or bacteria. This leads his doctor's to believe that it is his lung disease: Non-CF Bronchiectasis. This is not good. It makes me feel sick. I have worked so hard at trying to keep his lungs "good!" He will have a CT on Friday to see what new damage is occurring.
Please keep this handsome fellow in your thoughts and prayer's.
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