prayforsean.blogspot.com

Pray for Sean

A not so Happy 4th of July. I think the 34oz a day is to much as evidenced by the ear infection. Ear infections can be caused by uncontrolled reflux but since they refuse to do the pH probe how do we know if his reflux is controlled or not. I decided today that if they tell me Tuesday morning he can't come home then I am going to call his pediatrician and see about getting him transfered to a hospital who works WITH the parents not against in the best interest of the child. This is getting ridiculous.

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Pray for Sean | prayforsean.blogspot.com Reviews

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A not so Happy 4th of July. I think the 34oz a day is to much as evidenced by the ear infection. Ear infections can be caused by uncontrolled reflux but since they refuse to do the pH probe how do we know if his reflux is controlled or not. I decided today that if they tell me Tuesday morning he can't come home then I am going to call his pediatrician and see about getting him transfered to a hospital who works WITH the parents not against in the best interest of the child. This is getting ridiculous.

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1 pray for sean

2 no comments

3 73 duke cont'd

4 weight 7 6kg

5 71 still duke

6 630 inconsiderate staff

7 score

8 older posts

9 sean

10 followers

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Pray for Sean | prayforsean.blogspot.com Reviews

https://prayforsean.blogspot.com

A not so Happy 4th of July. I think the 34oz a day is to much as evidenced by the ear infection. Ear infections can be caused by uncontrolled reflux but since they refuse to do the pH probe how do we know if his reflux is controlled or not. I decided today that if they tell me Tuesday morning he can't come home then I am going to call his pediatrician and see about getting him transfered to a hospital who works WITH the parents not against in the best interest of the child. This is getting ridiculous.

INTERNAL PAGES

prayforsean.blogspot.com

1

Pray for Sean: 6.29 More Duke

http://www.prayforsean.blogspot.com/2010/07/629-more-duke.html

Cuz I'm the mom and I said so" is my new catch phrase not only to my own children but to all the idiots with superiority complexes also. Duke has an agenda they are not sharing it with me and they don't include me in Sean's plan of care, drastically different from Levine. Weight 7.34 kg. PO Bottles 120ml three times a day. Overnight feed 50ml/hr x 10 hrs. Posted by Cat McDonald. Subscribe to: Post Comments (Atom). Watermark template. Powered by Blogger.

2

Pray for Sean: 7.1 Still Duke

http://www.prayforsean.blogspot.com/2010/07/71-still-duke.html

Thank you Jackie for allowing me to go, it was very important for our family and wouldn't have been possible without you! Weight- Unable to obtain due to leads. PO feeds 120 ml 3x day. Overnight feed 50ml x 12 hrs. Sean was VERY restless for this but we aren't sure if it was the leads and all the wires or the formula so only the next night will be able to tell if off the EEG. Posted by Cat McDonald. Subscribe to: Post Comments (Atom). Watermark template. Powered by Blogger.

3

Pray for Sean: 6.30 Inconsiderate staff

http://www.prayforsean.blogspot.com/2010/07/630-inconsiderate-staff.html

Also another very interesting fact- the fact that my son's pupils aren't equal wasn't recognized until last night. Why did three nurses miss this you ask? Interesting question. None of the docs questioned this either. Wonder how many of them documented PEARL (Pupils equal and reactive to light) because they are most definitely not equal. Super Mini backpack to the rescue I knew there was a reason I brought it lol, it is now holding the huge EEG recorder thingy so he is mobile in his crib at least!

4

Pray for Sean: 7.3 Duke cont'd

http://www.prayforsean.blogspot.com/2010/07/73-duke-contd.html

So Scott is up with Sean at Duke and already they are trying to be a PITA while I'm not there. Sean does NOT do well with a Prilosec compound he reacts to it. So ALL WEEK we have been giving him his home Prilosec powder packets and they supposedly keep telling the pharmacy to quit sending up the compound since the patient can't use it (we better not be billed for it! Luckily it is clearing on its own with time but in the mean time the blisters have to be uncomfortable. PO feeds 120ml 3x a day.

5

Pray for Sean: A not so Happy 4th of July

http://www.prayforsean.blogspot.com/2010/07/not-so-happy-4th-of-july.html

A not so Happy 4th of July. I think the 34oz a day is to much as evidenced by the ear infection. Ear infections can be caused by uncontrolled reflux but since they refuse to do the pH probe how do we know if his reflux is controlled or not. I decided today that if they tell me Tuesday morning he can't come home then I am going to call his pediatrician and see about getting him transfered to a hospital who works WITH the parents not against in the best interest of the child. This is getting ridiculous.

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ejbamommy.blogspot.com

JOURNEY TO US: Eli's Journey

http://ejbamommy.blogspot.com/p/elis-story.html

Books, Toys, and Goodies. This may not be the best organized story. It may not flow well. But our journey hasn't flowed perfectly. It’s been a bumpy road, and continues to be. I will keep this page updated and try over time to smooth out some of the writing. But for now this gives our bumpy journey in some sort of order. January 2010 was spent at doctor’s offices and labs. Eli couldn't seem to gain weight. He kept choking and gagging and throwing up. The NG tube was in and out. Noth...Then came March 201...

ejbamommy.blogspot.com

JOURNEY TO US: Silence

http://ejbamommy.blogspot.com/2014/08/silence.html

Books, Toys, and Goodies. Monday, August 11, 2014. We are here again. The kids start school tomorrow. I'm torn. I have the mommy excitement of some quiet time, some time to clean house without having them come along 2 steps behind, the pride of them starting another year in school, the accomplishment. But I also have the flip side. Tomorrow begins another cycle of me here, home alone, wondering what I'm supposed to do. What my purpose is. Subscribe to: Post Comments (Atom). Books, Toys, and Goodies!

ejbamommy.blogspot.com

JOURNEY TO US: Goals

http://ejbamommy.blogspot.com/2014/08/goals.html

Books, Toys, and Goodies. Tuesday, August 26, 2014. Goals Most of us have them. Sometimes we meet them, sometimes we don't. Sometimes we forget we even set goals days later. Finally I said enough. This cycle had to stop. I was simply setting myself up for failure over and over again. I joined a monthly mileage group, I started posting every single mile on a document for my online running group to see. I started telling people what my goals were. This month I won't reach my utmost goal. My fall Sunday has...

ejbamommy.blogspot.com

JOURNEY TO US: Eli's Final Journey

http://ejbamommy.blogspot.com/2014/04/eli-final-journey.html

Books, Toys, and Goodies. Friday, April 25, 2014. I have gone round and round in my mind if I'm going to share this video publicly or not. Some of my closest medical mommas have seen it but that's all. I have held onto it for almost 1 yr, as this video was made a week or two after Eli's funeral. I have decided now, on this day, 1 yr after my son was wheeled into his final surgery, to share. This is my tiny man's final journey. This was our family's journey. This was our life. Love you guys 3. Subscribe t...

ejbamommy.blogspot.com

JOURNEY TO US: Flickers of Light

http://ejbamommy.blogspot.com/2015/03/flickers-of-light.html

Books, Toys, and Goodies. Friday, March 27, 2015. I haven't blogged in months. For quite a bit of that time I was in a pretty deep funk. The holidays were hard, really hard. The longer it's been since losing Eli the harder it seems to be. I really sank into a pretty dark hole, and the world had moved on and didn't really seem to notice. I tried my hardest to engulf myself in life and did a pretty good job of faking it when I needed to be out and interacting in public. April 28th is fast approaching. ...

ejbamommy.blogspot.com

JOURNEY TO US: What happened??

http://ejbamommy.blogspot.com/2013/05/what-happened.html

Books, Toys, and Goodies. Tuesday, May 7, 2013. This will be disorganized. things won't be spelled right. punctuation will be wrong. sentences will be wrong. i simply have to type the words. feeling may show so strongly at points and others may sound so numb. this is the best i can do now. We were supposed to have more time. we weren't on hospice. this shouldn't be our story. They sent Eli home Friday April 26th around 6pm. The attending begged his primary doc to take over at home care. We got ho...Aroun...

ejbamommy.blogspot.com

JOURNEY TO US: Inspiration

http://ejbamommy.blogspot.com/2014/08/inspiration.html

Books, Toys, and Goodies. Wednesday, August 13, 2014. It's here. Today's the day. They are all 4 gone to school. I did pretty decent today. I have received many messages this week telling me how amazing I am, how much I inspire them, how I make them a better parent, how strong I am. I did NOT have my life together. It wasn't smooth sailing. I was in no condition to be looked up too, I wasn't a example of the "proper way to navigate grief". I was failing. I don't have it all together. If our story, if our...

ejbamommy.blogspot.com

JOURNEY TO US: Cold and Warm @ Target

http://ejbamommy.blogspot.com/2014/11/cold-and-warm-target.html

Books, Toys, and Goodies. Tuesday, November 11, 2014. Cold and Warm @ Target. Yesterday was 3 weeks until Eli's 5th birthday, yet we only got to celebrate 3 with him in our arms. Today it's all of a sudden turned cold. The leaves are falling off the tree. There is talk of snow. Winter is right around the corner. Eli loved the cold. It was his time of year. Thanksgiving. Eli's birthday. Christmas. Tears poured down my face the entire drive home. These last few months I have gotten away from doing these li...

ejbamommy.blogspot.com

JOURNEY TO US: Back of the Pack

http://ejbamommy.blogspot.com/2014/10/back-of-pack.html

Books, Toys, and Goodies. Monday, October 6, 2014. Back of the Pack. I'm a back of the pack runner, way back. I feel like us back of the packers are forgotten. We reach the finish line and the only ones to cheer us in and congratulate us are the few family and friends who chose to wait. The food and drinks are depleted. The freebies and goodies are all picked over. Most of you have left, never even realizing that some of us are still out there working our way mile by mile to the finish line. It was a bru...

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Pray for Sean

A not so Happy 4th of July. I think the 34oz a day is to much as evidenced by the ear infection. Ear infections can be caused by uncontrolled reflux but since they refuse to do the pH probe how do we know if his reflux is controlled or not. I decided today that if they tell me Tuesday morning he can't come home then I am going to call his pediatrician and see about getting him transfered to a hospital who works WITH the parents not against in the best interest of the child. This is getting ridiculous.

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