Prayer Requests

Avery continues to do well and has graduated from her isolette into a big girl crib!  Her mom got to spend an extra day with her due to the holiday.

Phoebe's mom will be traveling to speak at a conference in mid-June.  Please pray for her strength and spirit.  Also continue your prayers for Phoebe and Deacon.

Ashlynn's MRI results were not good.

Kate got some great news!  They are moving on and into a new chapter.

Carly just finished her first full year of pre-school!

Blessings,

Amy

Update on Noah

This is the latest update on Noah, from his mom Kate's Facebook page.  Please keep them uplifted in prayer.

Just got home from our ortho appointment. It was a hard appointment. Noah has very tight ankles and knees (his feet are pulled back toward his calves and his knees don't straighten completely). It's a lot worse than it was at our last visit earlier this year. We'd hoped that we could use night-time splints to gradually stretch his ankles. These are splints that are initially set to the same angle as the ankle and are gradually tightened to stretch the ankle back out and bring it into correct positioning.

After looking Noah over, our ortho feels that Noah's ankles are too tight for the splints to work and that the only way to improve his ankle tone would be to do surgery on both ankles. His knees are in the same situation. We won't do surgery (and he didn't recommend doing it) because there is no point - if we thought he'd be walking, we'd do it because he couldn't ever walk again with these contractures in his ankles and knees.

It just made us so sad. He recommended AFO's (ankle foot orthotics) made to Noah's foot angle just to keep his feet from pulling back even more. He said they almost certainly will continue to contract, but wearing AFO's should slow it down.

Like Jeff commented tonight, there just aren't any good doctor's visits any more. There are no more quick fixes, easy plans, or simple decisions.

Noah still looks "OK" - not terrible, not great. He's not sick but doesn't seem totally well either.

Thursday Updates

Ava was recently inpatient due to her glucose levels.  Pray that she was able to get them resolved adequately to go home.

Kate had an MRI on Tuesday.  Please pray for no evidence of disease!

Rebekah has not had an update on her page in a couple of months, but please keep them in your prayers as I am sure they can always use them.

Waverly & Oliver:  Waverly has been working hard at walking.  Oliver recently lost his first tooth!  The family has had lots of excitement lately.  Matt’s book is now for sale!

Brody also hasn’t had an update in several months, but continue praying for them.

Patterson Family:  Kiefer recently celebrated his 4^th birthday, Samantha graduated, and they marked 2 years since their sweet Chr’ssie's homegoing.

Blessings,

Amy

Wednesday Updates

Ashlynn is doing better. She is off the ventilator and they are taking the PICC line out of her leg.

Eli is not doing well and can really use some prayers.  He is having a lot of dermatologic issues.  He is also having vision problems.  There are problems with his feeding tube and they will be having a surgical consult on June 5.  They can use LOTS of prayers!

Ethan recently had a feeding evaluation where some issues were discovered.  Pray that the therapists will be successful in helping him overcome these issues.

Josiah is doing fairly well and just got a few new teeth! 

Reagan has had a few off days but is hopefully on the upswing.  Pray that she will continue to improve and be able to sleep well.

Harmonee has not had an update posted for several months, but let’s continue to keep her and her family in our prayers as I’m sure they can use them!

Blessings,

Amy

Tuesday Updates

Ashley had to spend last evening in the hospital getting a blood transfusion.  She is having a lot of lab work done to determine why she is using but not reproducing the amount of blood she needs.

Christian is doing well on his blended diet and his vomiting episodes are a lot better after his mom made a little tweak and a leap of faith!  The family recently got their handicap parking permit and Shauna has an eye opening post regarding where we park up on her blog.

Emerson is very ill and as of last week was still in-patient and slipping further away from discharge. 

Joshua is traveling with his family this week and made the 4.5 hour trip well.  They were able to manage his pain and he was able to stay awake for the trip.  Pray they have a safe and enjoyable time.

Phoebe is home and the family is adapting to their new and tiring schedule.  Deacon is recovering from the burns he suffered and will hopefully heal fully without much scarring. 

Tesha continues to walk through her grief and help others going through the same in various different ways.  Pray that she will find healing in helping others.

Blessings,

Amy

Monday Updates

Continue to pray for Noah.  His mom’s most recent Facebook updates:

Noah has looked "off" since his transfusion. His heart rate is up and he now has a fever of 101.5.

We now HAVE to get blood from a vein. This is going to really stress him out after they spent so long trying to get a vein this afternoon. 

This could be a transfusion reaction or an infection, so they are doing infection labs - blood cultures from broviac and a vein, urine cultures, CBC, etc as well as labs for a hemolytic reaction.

He has only been off antibiotics for 4 1/2 days.

I am heartbroken.

Finally got blood late last night. Fever climbed quite a but is down now with IV ibuprofen. I haven't seen his labs yet.
Moved 2 doors down to a much larger room.

Amy can use lots of prayers as she starts a new journey in her life.

Charity had a wonderful time at a great “Red Carpet” event last night!  They have been enjoying some time at the park and had a fantastic Mother’s Day!

Ella is doing very well after surgery and has been seizure free for about 35 days!

Jonah and his family recently took a trip to visit family and had a great time.  His parents just celebrated their 8^th wedding anniversary and their event, “Jogging for Jonah” was a success!

Owen and family have been battling the sickies.  Pray that they would all be doing better soon!!

Veiyah was granted her “Make A Wish” wish and she and her family when to Disney at the end of April!

Blessings,

Amy

Urgent Prayer Requests

I have two urgent prayer requests tonight.

Please pray for Joshua. He is in an incredible amount of pain that they are having a hard time controlling.

Please pray for Noah. He is inpatient and not doing well. His mom is heartbroken and they really need our prayers right now.



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Sunday Updates

The Bolte Family welcomed the newest edition to their family, Jacob, and they are adjusting to having him home!

Brayden is doing very well!  He has a hip surgery coming up in several weeks. 

Jamie and her family moved over the weekend and are now completely in their new home that will be much easier for her.  They are having some issues with insurance and therapy so please pray that these will be worked out for them!

Jared is now a big brother!!  He also has hip surgery coming up in June and will have some casting done. 

Zoey and her family are doing very well.  Lots of great pictures on the blog!

Wesley is out of the hospital!  He is very busy with all of his various therapies and trying to do school work. 

Aiden & Ty:  Aiden is not doing well. Please pray for him!  Ty has been approved for his Make A Wish wish and they will be meeting with the committee tomorrow!

Just a note, when visiting the sites of those mentioned on the blog (click on their names), if you have time take a moment and sign a guestbook or leave a comment and let the family know you’re thinking of them and praying for them.  I have received more than one message letting me know that people appreciate knowing that there are people out there praying for them and lifting them up!

Blessings,

Amy

Saturday Updates

Battley is now 8 weeks old and doing well.  She recently had a cardiologist appointment where they upped her medicine to help with rapid breathing.  Pray that this is successful!

Grace’s mom shared a touching blog post about the battle within her (and lots of other parents, I’m sure) in terms of dealing with a sick child.  Send her some prayers and encouragement.

Mateo & McHale just turned 6!  They recently got new wheelchairs and took a fun trip.  Check out the great update on their website!

Witt is currently doing well.  His scheduled hearing test needed to be cancelled, but was not urgent.  He has some more appointments coming up and they can use good results.

Jacob has been newly diagnosed with osteoporosis.  He is anxious to be able to get into the pool again coming up, and they are looking into purchasing a new handicap accessible van in the next month.

Cici had an overnight EEG this week for some sleep issues she has been having.  While they aren’t exactly sure what to do about the issues (or if anything needs to be done), they do know that it is not seizures, and this is great!

Blessings,

Amy

Friday Updates

Aviana has been doing very well in school!  Her mom posted a touching Mother’s Day essay she wrote, as well as a great read about children with special needs. 

Carly went to a Father/Daughter dance with her daddy and had a wonderful time!

Elijah recently turned four and had a fun birthday party!  He is walking and gaining balance.  He’s also getting new glasses.

Gavin and his family enjoyed a fantastic Mother’s Day at the ocean!

Lilliana had a great 3 year check up and is now in the 50^th percentile for both height and weight.

Taleah is happily off steroids!  She is having some behavioral issues that they are working on.  She is currently in month one of maintenance.

Noah has been having some rough times lately and, as always, can really use our prayers.  His mom also posted a really informative blog post regarding different types of lines and tubes that you might want to read it you frequent sick children’s blogs and ever wondered what exactly they are talking about.

Blessings,

Amy

Update on the blog

Hi all:

I am three weeks out from my surgery, half way through my "recovery period" and doing better every day.  I continue to appreciate the sweet prayers and messages I've received.  Thank you!

In the next week or so I'm going to be rolling out a few changes in the way in which updates are posted and I think it's going to be a lot better.  The hope is that more updates get covered in a regular manner and I think it's going to work out wonderfully.  We shall see very soon! :)

As always, please feel free to leave any prayer requests in the comments, or send an email to safehaven_blog@yahoo.com.  If you have a blog, please share our blog with your readers.  Prayer is very powerful, and the more people we have praying, the better!!

Blessings,

 Amy

Jenson

Jenson went home to be with Jesus on Tuesday evening.  Please pray for their family - Mom Kristin, Dad Doug and big sister Sydney.

Will be back with some updates tomorrow.

Blessings,
Amy

Pray for Noah

Noah is not doing well and is headed shortly by ambulance to the hospital for a CT scan.  Please keep both him and his family in your prayers.

From his mom's Facebook update:

Dr. B and our nurse were here about 8 this morning. The nurse drew some labs and Dr. B decided he does want Noah to have a CT of his belly. His liver is enlarged and even though Noah was sleeping very deeply, he was whimpering in pain when Dr. B would press his tummy at all. :-(

The wrench in the works is that it will be best for Noah to go by ambulance which means the girls can't come with me. A sweet friend offered to come pick them up for as long as needed today while we get this taken care of. We are getting the CT done locally so it shouldn't be too terribly long.

The ambulance should be here in a little over an hour and I'll update when I know something.

Updates

Hi all.  I had my surgery a week ago today and am now home recovering.  Thank you for all the prayers, I appreciate them.

Jacob is back home.  Read his mom's latest update.

Phoebe is back home after her latest round of chemo. Please pray that her body would be able to regulate it's temperature and she will be able to stay home.

Jenson's sister Sydney is headed to the doctor this morning.  Please pray that she does not have a concussion.

Josiah is still having a very tough time.  Pray that he would start to get over this hump and celebrate his 3rd birthday in 10 days.

Victoria, who I mentioned in a previous blog post, lost her baby at 22 weeks.  She now has a family blog up and running and asked me to share it with you all.

Aviana rode the school bus all by herself and had a great first day!

As always, please feel free to leave prayer requests on the comments here or send an email to Safe Haven.

Blessings,
Amy