Little Update

(Update from our mom, Melissa)

Forwarding Hannah's progress today. Just wanted to pass along an update before we head off to bed.

Hannah is still waiting the results of the bone marrow biopsy (may be several more days to find out) but had a few other tests updated today.

Her hemoglobin at 10.1 (very good for her!), white blood count is 1.5 (better but 4-8 is normal) and Dr. Koenig said she can't go home til her neutracells (sp?) are above 1 which she's hoping will be tomorrow.

injected her with a lot of fluid last week when she arrived (she's 10 lbs or so heavier) and also gave her strong steroids so she's feeling kinda puffy again but will get lacix (sp?) for that.

She's sounding very chipper (the kids came to visit last night with Daniel David since they'd been apart for a week...VERY good medicine, in deed!)

The very good news is........................ her creatine level is down to 1.5 which calculates to 43% kidney function!!! Praise God for how awesome a Creator He is and especially of our human bodies.

Please keep praying for wisdom for the plethora of doctors caring for her, the right meds to help her heal and her system to stop destroying the blood.

Thank you! Thank you for praying and those who've served with Adonia & Creed, food, visits (Aunt Amy from Iowa came for her biopsy day:) and overall for being there for our family. WHAT would we do without you?

God's grace be poured out on each of you treasured friends.

(note from Chloe: Hannah told me that the Doctors think that one reason for the low blood count is that her lupus medication is too high a dose. So they are adjusting dosages and hoping this will help.)

Hannah in hospital again...

Hello dear ones,

Just wanted to let you know what's been going on lately with Hannah...

Thank you so much for your prayers after my last update. We are very thankful that the doctors were able to figure out what was going on, specifically with her nausea and loss of appetite. This seems to have been taken care of and Hannah has been able to eat more.

Unfortunately, Hannah started feeling really bad again this week. She started getting sores on her face and swelling. This was very discouraging to her as she was again stuck in bed, and worrying that she was on the verge of another Lupus flair-up.

She went to a doctor's appointment yesterday to get the sores on her face checked out, and ended up being admitted to the hospital. We are very thankful for this because they then found out that her blood count was down to a 5! Yikes!! That's almost as low as it was when she was when she was admitted into the hospital last August. Also, Hannah's white blood cell count was extremely low. Normal is 6-10 and hers was at .29! Not good. No wonder she's been getting every cold and flu that comes around. Throughout the night they gave her 3 units of blood and this morning her blood count had raised to an 11. This is good, but obviously we and the doctors are very concerned about how her blood count got so low in the first place.

Hannah is one of the most optimistic, happy, fun people I know, so its very easy to forget that her body is still not strong. This is just a reminder to all of us how much she still needs our help and support.

One good piece of news is that they also checked her creatine levels (kidney function), and that number has gone down from 2.4 (in January) to 2, which means kidney function is going up. Praise God!

Hannah is going to stay at the hospital for a couple days so that the doctors can try to figure out how to best help her.

Here are the main areas that we need prayer right now:

- Please pray that the doctors are able to figure out why Hannah's blood count dropped so low. Pray that the doctor's have wisdom if her medications need adjustments.

-We're realizing that we're going to need to arrange help in the next coming months so that Hannah is able to get well for GOOD and so that she, Daniel and Esther don't over-do it. : ) We're going to be meeting soon to schedule out help with child care, meals and house cleaning for the next 6 months. Please pray for grace and wisdom as we do this. Also, if you have any interest in helping out with any of these things, please e-mail me at chloe (dot) heston (at) yahoo (dot) com, and I'll get back with you as soon as we know what the specific needs are.

-Please pray for the encouragement of Hannah and Daniel through this difficult time, that their hearts would be strengthened with hope and comfort as they place their faith in our Father.

Thanks so much for all the prayer! What a huge blessing you all are!!!

Blessings, Chloe

Some Prayer Requests...

Hello everyone!

This update can't be too long, and actually, it isn't much of an update, more like prayer requests. :)

3 prayer requests:

1. Because Hannah's immune system is so weak, she's been sick for what seems like forever. Right now she has a really bad cough, congestion, headaches, stomach aches, nausea, fever, etc. She's basically just been surviving in bed. For various reasons Hannah has had no appetite and has lost a lot of weight (too much). Please pray that we can figure out an antibiotic that will get rid of the cold/infection that she had, and that she will get her appetite back so that she can get some meat back on her bones. Also pray that she will be encouraged...it can be very discouraging being sick for sooo long, and not being able to function normally.

2. Our parents just got on the plane this morning to head back to Africa. Because my parents were living with Hannah & Daniel and helping with so much, now while Hannah is so sick, most of the load of taking care of the house and kids falls on our 16 year old sister Esther who is still living with them and Daniel. Please pray for grace, strength and encouragement for Daniel and Esther. Also we are hoping to get something set up so that a couple other families can help babysit the kids a day each week...please pray that we'll get something like this set up soon.

3. It is one of our main desires that Hannah's immune system/gut and body in general would be strengthened and healed through a healthy diet and natural supplements. Please pray that Hannah and Daniel would have the motivation, wisdom, time and grace to be able to go about changing her diet and such. Its easy to get overwhelmed when it seems like there are so many “to-dos”...and as you know, it always requires huge amounts of motivation and discipline to change ones lifestyle...it can be a big learning curve.

Thank you all so very much for praying. At times things can seem so dark and its easy to get discouraged, but we are remembering His faithfulness and that His mercies and new every morning - ah, so good to know! We also continue to praise Him for answering our prayers so far and lavishing us with love...Hannah is OFF dialysis and we just can't be happier about this. :)

Much love to you all!

Chloe

PRAISE GOD!!!!!

(Update from Daniel Winter)

Hello All!

It has been quite a while since an update and we have great news! We are celebrating like Crazy!!!
Hannah's kidneys have been improving! The kidney doctor took her off of dialysis the Thursday before Christmas to see how her body would handle it. She saw the kidney doctor today to go over her blood tests. He said that her kidneys are functioning up to 25% and that she is doing well enough that they can remove her catheter and she will be able to stop doing dialysis! This is a huge answer to prayer!, because if she was not doing well enough, they were going to install a more permanent catheter or shunt. Both of which are more work and very undesirable. So we are very thankful for this! So please keep praying that her body would keep improving and her kidneys would heal and gain even more function. We are just hoping Hannah doesn't have to go back on dialysis anytime soon in the future (or ever in her life! :)
Hannah is very super excited to not have to spend 12 hours a week in the dialysis chair. She came to me today after her appointment and shouted "I'M FREE!" Now that she is 'free' from that, she hopes to do a bit of traveling this year.
Also she saw the lupus doctor on friday and he also had great news! He said if he did not know hannah's history and just looked at her blood work he would not even know that she had lupus! The lupus is in remission! This is due to our gracious Lord and the work of the newer drug - CellCept. She may still have to take CellCept for several more years. By March she should be off prednisone. We are very excited about all this!

One other big big answer to prayer is Hannah's blood count. Like we had prayed, it went UP the past few weeks, even though she wasn't getting the medicine to help with that. It is now the highest its been since August...at 10.5! Praise God!

We (the fam) are doing great! God is really good and I just so appriciate God's design when He created family. We have had wonderful support and lots of love pouring in. Hannah and I have been constantly growing closer as we have been working through life's adventures together! We are quite a team! And I am so blessed to have her and the wonderful children we share!

Again, I (and Hannah) just want to thank you so much for all your prayers, encouragement, and support. Can't even express how much this means! God is doing His mighty work in us. And there is nothing sent our way that God can't give us the strength to handle. We just take it one step at a time, holding on to His mighty hand.

Love to you all,
Daniel, Hannah, Adonia, Creed

SIDE NOTE: Hey guys, Chloe here. I know quite a few of you have asked for Daniel and Hannah's address so that you could bless them financially. Their address is 616Walnut, Leavenworth, KS 66048. Thank you all so much. We praise the Lord that Hannah's medications are going down, but she is still taking quite a few, and they have to pay a pretty high deductible. You all are such a blessing!

December Update

Hello again all you beautiful people!

Long time no update, right? Ha ha, I do apologize for that, but I have my reasons. ;) We've been waiting on a specific Dr.s visit that finally happened yesterday to find out Hannah's current status.

So what's been going on? Well, Hannah's shingles are drying up very nicely! We are very thankful for this. Unfortunately, she still has a bad cough/chest cold/sinus infection (had this for a couple months) that just won't let go because of her weakened immune system. Despite that (and Lupus – ha ha) she continues to be the prettiest, funnest girl in town! She is having a blast getting ready for Christmas, and getting the house cozy and inviting for the holidays.

I bet you're wondering what the Dr.'s report was, so I'll get straight to that.

Good news: Hannah's Creatine levels have continued to go down (they are now at 2.4), meaning that her kidney function is going up! While she was in the hospital, her kidneys were functioning at 6%. They are now up to 19%. Hannah has been doing dialysis three times a week, but because of the improved creatine levels, the plan is that Hannah will take a little break from dialysis from the 22^nd to the 3^rd of January.

The not-so-good news: Hannah's hemoglobin (blood) count has gone down to 8.4. If it goes below 8, she'll need to get another transfusion. Each time she is dialysed, Hannah receives a medication that keeps her hemoglobin levels up. Our concern is that during the break from dialysis when she won't be receiving this medication her blood count will drop, and we really don't want this happening.

Hannah is on many medications that are keeping her immune system suppressed so that the Lupus doesn't flare up, but our strong desire is to heal her kidneys and build her immune system back up over time. Dad has been doing a lot, lot, lot of research and has found a couple things that she's just gotten started on, or will hopefully start soon. A couple of these: Co-Q-10, probiotics, greens (powder/capsules) and low-dose naltrexone. We're also really looking at her diet and figuring out what foods well aid the healing process.

One thing I talked about quite a bit in the last update was Hannah's neck catheter (for dialysis) possibly needing to be replaced with a permanent arm port. At the moment the neck/chest catheter is still holding up. The decision to get an arm port is still on hold – praise God! We soo hope she doesn't have to get the permanent port, and this will depend on if she's able to get off of dialysis soon or not. We will let you know if there's an update here later.

Dad and Mom have purchased their tickets back to Mozambique on January 31^st. Elijah and Esther will continue to live with Daniel and Hannah for now. There are going to be a lot of changes and challenges for Daniel and Hannah after our parents leave. If Hannah has to continue dialysis, then they'll need to figure out help with the kids. Also Hannah's energy level is pretty low, so we're trying to figure out how Hannah can get help taking care of the kids, meals and the house.

I just remembered that I had said something on the facebook page about there possibly being a fundraiser in December to send Hannah to California. This is not going to be happening after all. Sorry for the confusion!

I've saved the prayer list for the end. :) We so very much appreciate your continued prayers, and see them answered daily. Here's the current (abridged – haha) prayer request list:

• Most importantly: When it comes to Hannah's diet and health regime, please pray for clarity, desire and discipline for Hannah and Daniel. This will ultimately impact her kidney function, hemoglobin count and lupus, so this is big

• Other big, big request: Pray for clarity, peace and help for Hannah and Daniel for after our parents leave. There are just so many logistics to consider...pray everything falls into place with their schedule.

• Please pray for the break that Hannah takes from dialysis over Christmastime. Mainly that Hannah's blood count stays where its at, or even goes up! :)

• Pray that Hannah's current neck/chest catheter continues to hold up well and doesn't get infected so that she does NOT have to get the permanent arm port.

• Pray that Hannah's body fights off this nasty cough/cold/infection soon.

• Pray for the relationships of everyone in the house (marriage, parental, siblings, etc.)...with crazy schedules (Daniel is working 6 days a week/two jobs right now and Hannah had dialysis 3x a week plus dr. appts.) and lots of people in the house, pray for grace, love, peace, awesome communication, and really good connecting time for everyone involved.

That's all I can think of at the moment. If there are any specific questions I didn't answer, feel free to leave a comment and I'll try to reply back quickly. ;)

Again, THANK YOU soo very much for praying. We do not take this for granted. You are such a blessing to us.

Until the next update...

Love to you all!

Chloe

Hello friends!

I know a lot of you are wondering how Hannah's doing, so I thought I'd give you a quick update.

Hannah's Shingles are drying up, and she is finally off the high dose of painkiller she was taking for the nerve pain...Praise the Lord! The steroid shot that she got in the hospital is now helping with the pain and she is able to function pretty normally again. Thank you so much for your prayers for this!

Hannah went into the doctor to talk about getting a permanent port in her arm for the dialysis soon. Right now they are using the catheter in her neck, but I guess it's not going to last much longer, and could get infected if they don't switch to an arm port soon. We are not very excited about the prospect of getting something in her arm, as that would require surgery, and would definitely be more serious than the catheter in her neck. Please pray that Hannah's kidney function continues to go up so that she will be able to be off dialysis SOON, making the arm port unnecessary. At the moment we're not sure what the doctor thinks about Hannah's progress and the timing of coming off of dialysis. As soon as we know more details about this, we will let you know.

Please continue to pray for Hannah's blood count. When they last checked, it was at a 7.9, and they are concerned about anything under an 8. Because of this, Hannah will be getting another transfusion in a few days.

Also, please continue to pray for peace in Hannah and Daniel's home...with so many people living together there right now, it can be rather stressful at times, as I'm sure you can imagine. :) Of COURSE there is lots of fun going on too! Life is wonderfully crazy right now. :)

I will update you as soon as there is any more new news.

Much love!!

Chloe

Hello Friends!

I just wanted to share the good news that Hannah is out of the hospital (after spending two nights there, she got out yesterday evening).

I just talked with her this morning and she is still in quite a bit of pain when she is walking or moving around, but she was very excited that the pain has gone down significantly when she is sitting. At this point she is still planning on being in the wedding, and just "dealing" with the pain. She is veeery excited about this, and grateful that her Shingles are not contagious.

She was given a shot of steroids for the pain in the nerve in her back that should last for a month. She is also taking some new medications for the pain and to get rid of the Shingles.

We're not sure how long it will take to get rid of the Shingles (and the pain). The Dr.'s say it could be from a couple months to a couple years.

Hannah specifically asked that you all please pray that her pain would continue to go down (when she's walking her pain is about an "8"). Also please pray that the Shingles goes away SOONER rather than later. :)

Thanks soooo much!

-Chloe