Prayers are needed for our hydro family. I have "met" some incredible families through the Internet (some even IRL) that also have children with hydrocephalus. We support each other through our journey and all the ups and downs that having a child with hydrocephalus can bring.
Please say a prayer tonight for Matthew who will be having surgery on Friday to have a tracheostomy placed to help him breathe. Also say a prayer for Elisabeth, who recently had a shunt revision and is now experiencing severe pain which has doctors stumped.
Thank you for your prayers.
Showing posts with label prayer request. Show all posts
Showing posts with label prayer request. Show all posts
Thursday, March 29, 2012
Monday, August 8, 2011
Oh Norah...
I am worried about Norah. While I worry about Norah every day, this worry is different.
Today we saw Norah's pediatrician and shared with him all of our concerns about Norah that have developed over the summer. How things have emerged that previously haven't been a problem before or have gone unnoticed because she was an infant. Some things just aren't as noticeable until your get to the point where a child should be able to do it without difficulty or can tell you it's different than the norm. I am not willing to sit around letting little things turn into big things, or to see Norah lose progress and abilities she has previously been able to do.
Our pediatrician listened to all of our concerns, really listened, probably got behind seeing other patients because we discussed and reviewed everything listening. He referred us to new doctors, who practice outside of the children's hospital but are still affiliated if Norah was to need inpatient care. He said that he has seen some of these doctors for his own kids, that makes me feel better. I left his office with a plan and feeling better about my concerns.
The plan, call the neurosurgery team and relay all the concerns, stressing Norah's appointment should not be delayed for another month. (It was cancelled and no appointments were available until the end of September). They agreed with all of our concerns so Norah's MRI for next week is still on with appointment to follow after she wakes up from the sedation (amazing how that appointment reopened). Meanwhile, Norah will have an upper GI x ray to see what kind of swallowing problems, if any can be detected. An appointment with an ENT is also being scheduled to see if Norah's tonsils and adenoids are causing problems. We were able to make an appointment with a new neurologist. Norah's weight continues to be below the 3rd percent. Bless him for not using the statement failure to thive. She drinks two Pediasures a day to help gain weight and will continue to do that for now, with a weight check in four months. We are also contacting a new feeding clinic for additional help with eating behaviors and weight gain. Norah is also going to the eye doctor this week to check on her vision. I am sure there is more but for now that's what is on my mind after I spent lots of time on the phone making appointments and speaking with doctors this afternoon. All this while trying to set up some training at work so I can keep my job as a nurse and return to work in a couple weeks.
I feel like we were able to find a nice place this last year - Norah was healthy and thriving, making slow and steady progress. Then since late spring things have been building and I feel like now I'm sitting on an active volcano about to blow.
For now this is a verse that I turned to while I was pregnant with Norah and am using to remind myself to put that worry away.
Philippians 4:6-7: Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.
Please keep Norah in your prayers as we head into lots of appointments in the next couple of weeks, as well as surgery to repair her hernias.
Today we saw Norah's pediatrician and shared with him all of our concerns about Norah that have developed over the summer. How things have emerged that previously haven't been a problem before or have gone unnoticed because she was an infant. Some things just aren't as noticeable until your get to the point where a child should be able to do it without difficulty or can tell you it's different than the norm. I am not willing to sit around letting little things turn into big things, or to see Norah lose progress and abilities she has previously been able to do.
Our pediatrician listened to all of our concerns, really listened, probably got behind seeing other patients because we discussed and reviewed everything listening. He referred us to new doctors, who practice outside of the children's hospital but are still affiliated if Norah was to need inpatient care. He said that he has seen some of these doctors for his own kids, that makes me feel better. I left his office with a plan and feeling better about my concerns.
The plan, call the neurosurgery team and relay all the concerns, stressing Norah's appointment should not be delayed for another month. (It was cancelled and no appointments were available until the end of September). They agreed with all of our concerns so Norah's MRI for next week is still on with appointment to follow after she wakes up from the sedation (amazing how that appointment reopened). Meanwhile, Norah will have an upper GI x ray to see what kind of swallowing problems, if any can be detected. An appointment with an ENT is also being scheduled to see if Norah's tonsils and adenoids are causing problems. We were able to make an appointment with a new neurologist. Norah's weight continues to be below the 3rd percent. Bless him for not using the statement failure to thive. She drinks two Pediasures a day to help gain weight and will continue to do that for now, with a weight check in four months. We are also contacting a new feeding clinic for additional help with eating behaviors and weight gain. Norah is also going to the eye doctor this week to check on her vision. I am sure there is more but for now that's what is on my mind after I spent lots of time on the phone making appointments and speaking with doctors this afternoon. All this while trying to set up some training at work so I can keep my job as a nurse and return to work in a couple weeks.
I feel like we were able to find a nice place this last year - Norah was healthy and thriving, making slow and steady progress. Then since late spring things have been building and I feel like now I'm sitting on an active volcano about to blow.
For now this is a verse that I turned to while I was pregnant with Norah and am using to remind myself to put that worry away.
Philippians 4:6-7: Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.
Please keep Norah in your prayers as we head into lots of appointments in the next couple of weeks, as well as surgery to repair her hernias.
Friday, November 12, 2010
Prayers for Matthew
A little boy, Matthew, who was also born with hydrocephalus is in need of some prayers tonight. He has been sick for a few weeks now with severe vomiting. I have been keeping up on his families frustrating journey through their blog. His mom, Jill has a amazing letter that she has written to families that happen upon her blog because their child is diagnosed with hydrocephalus. I find her to be a truly remarkable lady and caring mother to her children. Please send them some prayers tonight as the drive from Nebraska to Minnesota with their sick boy and find some healing answers for his illness.
Matthew 21:22 "If you believe, you will receive whatever you ask for in prayer."
Thursday, May 6, 2010
Catching Up
Here's what's up!
1. Prayer requests!! One for Emerson, the son of my friend Victoria, who lives down the street. He began having siezures this week and has a cyst on his cerebellum. Second for Cayman. I have been following her family blog since I found out Norah had hydrocephalus. She's sick and needs our prayer.
2. In just over a week Jason, Norah and I will be headed back to North Carolina. We are going to Duke to have Norah's stem cell infusion for a second time. We believe this has helped Norah's developement and pray that this second infusion will spark new milestones for Norah. Grant will get to stay home with his Granny watching him.
3. Grant has some new backyard toys and LOVES to play with them. Thanks to Grandma and Grandpa Zehrung for the Cozy Coupe! I am having a hard time letting my little guy be more independent and explore. Will I ever feel like he's old enough to go play in the yard by himself? Man if I'm struggling with this, I can already tell that the first day of school is going to be a tough one and it's years away.
4. Happy Birthday to my Mom and Dad, and to my Mother-in-law! I can't believe you all share a birthday. I hope you all enjoyed your day.
5. Norah is getting closer to sitting independently every day. On Tuesday we sat out with our neighbors for awhile and Norah sat on her own for 5 minutes. She hasn't repeated this accomplishment, but I know she can do it. I love that spring is here.The warmer weather allows you to reconnect with your friends and neighbors after hibernating all winter.
1. Prayer requests!! One for Emerson, the son of my friend Victoria, who lives down the street. He began having siezures this week and has a cyst on his cerebellum. Second for Cayman. I have been following her family blog since I found out Norah had hydrocephalus. She's sick and needs our prayer.
2. In just over a week Jason, Norah and I will be headed back to North Carolina. We are going to Duke to have Norah's stem cell infusion for a second time. We believe this has helped Norah's developement and pray that this second infusion will spark new milestones for Norah. Grant will get to stay home with his Granny watching him.
3. Grant has some new backyard toys and LOVES to play with them. Thanks to Grandma and Grandpa Zehrung for the Cozy Coupe! I am having a hard time letting my little guy be more independent and explore. Will I ever feel like he's old enough to go play in the yard by himself? Man if I'm struggling with this, I can already tell that the first day of school is going to be a tough one and it's years away.
4. Happy Birthday to my Mom and Dad, and to my Mother-in-law! I can't believe you all share a birthday. I hope you all enjoyed your day.
5. Norah is getting closer to sitting independently every day. On Tuesday we sat out with our neighbors for awhile and Norah sat on her own for 5 minutes. She hasn't repeated this accomplishment, but I know she can do it. I love that spring is here.The warmer weather allows you to reconnect with your friends and neighbors after hibernating all winter.
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