Sunday, June 30th......

Overwhelmed, Loved, Blessed..............just a few of the words that express how we feel after the benefit for Addison yesterday.  Thank you isn't sufficient but it's all I know to say.  Thank you to everyone who came out, thank you to everyone who gave and thank you especially to everyone who put it together and worked so hard to make it a huge success.  We love each and every one of you and are truly thankful to have you in our lives.  This has been a very difficult journey for our family and especially Addison, over ten years of constant pain and struggling is finally on its last chapter and the sequel is bound to be awesome.  :) 
There is no way to repay the love and kindness we've been shown, but please, each of you know, that if ever there is anything we can do for you, please don't hesitate to ask.
Thank you all and love you guys!

Friday, June 28th...

So happy that Micah got discharged today and has come to join us at the Ronald McDonald House!!  His nausea seems a little better too!!  Addison has had a really good day, the only appt she had today was for the nurse to come out for a dressing change on her picc line.  The rest of our day was so spent with Dawn and Micah.  Missing Thomas and Bailey terrible today. 

Thursday, June 27th..

Turtle Derby Day!
Today was a fun day at Amplatz Children's Hospital, it was the 27th annual Turtle Derby.  It was a day of fun and games to raise money for the hospital.  The main event was turtle races featuring turtles sponsored by different departments in the hospital.  They had multiple heats and even finals and a crowning of the winner with a greenery wreath. Lol. It was a nice break from doctor visits.  Micah didn't feel well enough to join us for the festivities, but hopefully he will feel well enough to be discharged to the Ronald McDonald house tomorrow.  Can't wait to have them here with us.  We finished off our day with a three mile walk along the Mississippi River. 

Wednesday, June 26th......

Today we had a doctor's appointment,a visit with Micah and we said goodbye to our new friends from Montana who have walked in our shoes.  Micah looked amazing today, still some nausea but much perkier than previously.  Addison and I walked two miles today, she just amazes me with her determination and strength. 
Tomorrow is a big day at the Children's Hospital, it's their annual turtle derby!  Addison and Micah are very excited. They have food, games, prizes and of course turtle races on the front lawn. :)
In the picture with Addison is our new friend Jordan from Montana who is eighteen months out from her surgery and is doing amazing, no pain and playing soccer and doing cross country. We send a big thanks to her and her family for the graciousness in sharing their time and stories with us. 

Tuesday, June 25th....

After a slow start to the day because of some nausea, we ended it with a trip to the aquarium and a visit with Micah.
The aquarium was very cool and Addison did great.....I had to keep up with her.  We even went to the mall where she spent some of her money from the Bible School Youth at our church, thanks guys for thinking of her. :)
Micah looked better today and though very nauseous, no vomiting today, YAY!
We miss NC and our family and friends more and more everyday.  Can't wait til the day comes we can head back south.

Monday, July 24th....

Had a busy day today, went to a conference on chronic pancreatitis and three doctors appointments.  They say Addison is a poster child for this surgery and has just blew everyone away. We all know why, a Mighty God, and then secondly an awesome surgeon.  Thanks for the prayers for Micah, today seems to have been a turning point for him.  His nausea and vomiting have been very minimal today so the ng tube may be doing the trick to avoid surgery.  Thank you Lord and Prayer! 

Sunday, June 23rd

Please continue praying for my sweet nephew Micah, even with the ng tube back in place he is still vomiting. 
Addison and I had a pretty good day. We got the pleasure of meeting four other families who have had children living with pancreatitis and have been through or looking into having the TPAIT surgery.  For the next two days there will be conferences held for these families to get the latest information on the surgery and diabetes from the field experts.  Hopefully Addison will feel well enough to attend some portion of these conferences.  Two of the girls we meet were thirteen like Addison and over a year out from surgery and have been pain free.  Amazing! 
It's so cool to meet with other parents and kids who have basically lived your life.....a life with pain, with no answers, no hope, and then they too found the University of Minnesota and the transplant team that has given us all hope and thoughts of a life not based or planned around disease. 

Saturday, June 22nd....

Today was just a lazy day for us girls.  Just hung out and watched the rain.  They had to put the NG tube back down Micah's throat to try and relieve the stress on his stomach and intestines from non stop vomiting.  The hopes are that the tube being back in place will allow inflammation where the stomach and intestines meet to calm and shrink down opening up the flow.  Please continue praying for him and that the tube being replaced fixes things. 
We also had a visit from another thirteen year old girl and her mother from Montana who are actually having a three day camp in town for pancreatitis children.  It was so nice to talk and relate and share stories.  They have invited us to attend any portions of the camp Addison feels up to.  Tomorrow they are having a get together which they have moved here to accommodate Addison, very kind and gracious people.
Addison's please quit taking my picture face below.lol

Friday, June 21.......

First day of summer, yay, too bad we can't hit the pool yet or go to the beach.  Before long we will be able to do lots of things without the worry of, what if, what if she has an attack, what if she's too sick to go, etc.
We went to the movies today and then hung out with Micah most of the afternoon.  He is still having lots of nausea and vomiting and after some xrays today it appears he either has a blockage or just inflammation from surgery pressing on his intestines.  The plan is to try suction on his gtube and hopefully if it's just inflammation it will correct itself in a few days, if it's a blockage then he will need surgery.  Please pray for him, a second surgery would be very tough. 

3 Weeks Post Surgery....

Can't believe it's ALREADY been three weeks and also that it's ONLY been three weeks.  Addison is doing amazing! God has truly blessed her surgery and recovery and that is thanks firstly to Him and secondly to all of you who have lifted up prayers for her. Thank you.  We had a very special visitor today, Preacher Rick from our church flew in to spend some time with Addison and to bring her some goodies from home.  We really enjoyed the time we spent with him today and the fact that he would take the time to fly back and forth in one day just to check in on her.  He truly is a very special man,touched by God and we are so fortunate to call him our pastor. Addison got to show him her favorite part of the whole thing, Jerry, the house dog. :)  Also, thank you West Lenoir for sending him to visit us.  He brought along a beautiful prayer quilt from Worship Point Baptist, thank you to the members of that church.  In the mail she received a care package from Collier's United Methodist, thank you to those members and my friends there, Phil, Alicia, Ethan and Hannah Greene. The love and generosity that has been shown our family is something we could never even begin to repay. Thank you is just not sufficient but neither are any other words. 

Wednesday, June 19th

Addison is still doing really good. We are excited that Preacher Rick is flying in tomorrow for a visit. :)  Micah is still having a rough time with nausea and vomiting. :(  Today we visited him and he was very pitiful looking, please continue praying for him.  Our exciting adventure for the day was a trip to the pharmacy. Lol. Hope everyone in NC is well. 
For pictures today I'd thought I would share the pictures the doctors gave me of Addison's pancreas.  Also, the report of how bad it was.  My favorite part is the firmness description....rock like.  The yellow mess of a picture is her islets under the microscope.

Tuesday, June 18th...

Pretty uneventful day, Addison has been up and about most of the day.  She and I even shot a little basketball in the gym here at Ronald McDonald house. We ventured out for a drive and then attended a birthday party for a dog, lol. Jerry, the house dog here, had a big birthday bash in the courtyard today, he turned 7, lol.  Micah is having some trouble with nausea and vomiting which is often rough in the first month after surgery. Missing NC and the loved ones we have there. 

Monday, June 17th.....

Today is our first day of outpatient doctor appointments which will run through the end of July.  Addison is feeling pretty darn good, still taking pain meds regularly but trying to eat a little here and there.  Her blood sugar had been so so, a little too low and too high but nothing dangerous.  We are going to visit Micah between appointments but I heard he did three laps in the picu yesterday. He is bound and determined not to let his girl cousin show him up, lol.  Thanks to all of you for the continued prayers, encouragement and support. Each of you are very special to us and our family.  Addison misses North Carolina so she has overtaken my Tarheel blanket because she says it makes her feel and think of home. :) Though you'll see in the picture while she slept her aunt Dawn snuck a University of Kentucky blanket on her lol.  Hopefully there is no permanent damage. :p

Sunday, June 16th.....

First of all, Happy Father's Day to Papa David, Papa and most of all Thomas Land.  Thomas, you are an amazing father and a great man. We love you and miss you terribly. 
First night at Ronald McDonald house went pretty good. Up every two hours for glucose checks and/or meds.  The 800 am meds are the grocery list ones, took forty-five minutes to crush, mix, draw and administer all her morning meds. Lol. It's a lot.  But so very thankful to be out of the hospital and have a little more freedom.  Hope everyone has a wonderful Sunday, Lord's Day,Father's Day. Love and miss you guys in NC.
P.S. The address here is
Room 322
621 Oak Street SE
Minneapolis Minnesota 55414

Saturday, June 15th

Waiting on home health to come by with the formula, feeding pump, lipids and iv pump and then we are off to Ronald McDonald House.  Very excited to be getting out of the hospital but also very nervous because it all falls on me.  Ridiculous amount of meds and schedules and feeds and everything to keep straight and on track.
Micah is doing pretty good, has gotten an overnight fever down a little which is good.  Just pray that he keeps moving forward and I keep these meds straight. 

Friday, June 14...

Sorry it's taken all day to post something just been a rough, busy day.  Addison has had vomiting and severe pain yesterday and today and not sure why.  Her white count is up so they did an ultrasound to make sure nothing of concern in the belly, just an abscess in the pancreatic fossa which is unchanged since a week ago, they say it's normal to have a fluid collection at the site of a newly removed organ.  Hopefully we can get the pain control back in hand and her appetite back up so we can move forward with discharge. Discharge is on hold right now with these minor set backs.   She also has developed an allergy to the erythromycin so that has been stopped. 
Micah came through surgery like a champ.  He is having those really bad first few days after surgery so please lift him up in prayer. 

2 Weeks....

Hard to believe it's already been two weeks since she had surgery.  The things that she has been through and experienced in these two weeks most people will never have to experience in a lifetime.  They are still working on getting the best formulation and dosing for pain management but they say she is doing so amazing that she may be discharged tomorrow to go to Ronald McDonald house.  Wow, two weeks earlier than the norm, thank you Lord and thank you all for prayers.  Continue remembering my nephew Micah when you pray as he is currently in hour nine of his surgery right now.  Hugs and Kisses to you all.

Pajama Gram...

This afternoon Addison received a pajama gram from her wonderful Uncle Neal and Aunt Cheryl!  They are the cutest personalized pajamas in a cute bag with bath confetti. Addison loved them. Thanks so much guys!

Day 13 Post Op....

God has been so Good. He has answered prayers and performed a mighty work through this surgery. The doctor's rounded this morning and Addison is doing so extremely well they are talking about possible discharge to the Ronald McDonald house this weekend, that's two weeks ahead of the standard and probably a record. AMAZING! Addison still hurts some but that's to be expected after surgery but on a whole she is superwoman! Very sad today because Thomas, Bailey and Nana and Papa just left to go back to North Carolina.  Please pray for my nephew Micah as his surgery is in the morning.  Thanks and miss you all.

Day 12 Post Op....

Addison is doing so amazing.  Had a rough time getting the picc line in yesterday but now that it's in place it will be her iv access for the remainder of our time.  She continues to receive wonderful ecards that she enjoys reading.  Also, she got another great package today from my work family at Grace. It was full of stuff to make her smile.(see pic lol) She loved it guys, thank you, I miss and love you all. Thomas and I are spending the afternoon at the mall with Bailey as this is our last day together before they head back to NC tomorrow. Nana and Papa are hanging out with Addison while we are gone.  Hopefully she will not be completely rotten when I get back. Lol

Therapy Dog Visits......

Highlight of Addison's whole time in Minnesota was today when Dodi a Great Dane therapy dog stopped in to visit. Biggest smile I've seen from her in quite some time. :)

Address for Addison....

Addison Land Room C5121
UofM Amplatz Children's Hospital
2450 Riverside Avenue
Minneapolis Minnesota 55454

Day 10 New Room C5121

Got moved into our new room on fifth floor. These rooms are so big and geared toward making a kid feel at home.  Blessed to have a little more room and freedom. 

Day 10 Post Op...Bye Bye ICU

Today is a big step forward, we are getting stuff together to move from the ICU to the fifth floor. :) Had a little trouble with her blood sugar bottoming out over night with the switch from iv insulin drip to subcutaneous long acting insulin injections.  Blood sugar was down to
35 last night but has leveled out this morning.  Thanks for all the prayers that have called this far. Love you guys. Thank you Lord for this BIG Forward Step!

Day 9 Post Op....

It has been a pretty good day, we even had some sunshine here. We've really only seen snow or rain during our trips to Minnesota.  Bailey is feeling some better today and Addison has walked a mile and had her first liquids by mouth today. It's only 8 oz three times a day but it's exciting for us. :) Her blood sugars are all over the place so hopefully we can get that more stable.  The plan right now is to move from icu to a regular room tomorrow. On Monday they will pull the jugular line and put a picc line in.  Since switching to the fat free formula for her feeding tube the drainage from the ascites has greatly improved, so hopefully the cut lymphatic vessel will repair itself. Yay :)  Thanks for all the prayers. 

Day 8 Evening..

Addison has had a really good day all things considered. Please remember Bailey in your prayers she is having a flare with her pancreatitis and is back at the room with abdomen pain and vomiting. Thanks

Day 8 Post Op......

Yesterday was another back stepping day, lots of pain and vomiting.  They were really increasing her tube feeds very rapidly and I think it all was maybe stemming from that. Her intestines are just starting to function again and then the feeds were increased quickly, just a little much for her.  Last night they turned off the feeds again and she seemed to ease a little. Restarted feeds this morning with a plan to increase rate more slowly. With the setbacks it has bought us extra days in the icu but hopefully in the next day or two she can move to the fifth floor to a regular room.  I know God is still in control even with the forward and backward steps and I know prayer has her covered and is at work thanks to all of you. Happy Friday to All from a still chilly Minnesota :)

Day 7 Post Op...

Last night was much better then the previous two.  She slept pretty good and the blood sugars are running pretty stable.  They are restarting tube feedings today and we will see how that affects her drain and slow bowels. 

Day 6 Post Op....

This evening has ended on a much improved note over the last couple of days. More alert and able to interact with others and finally had a small result in the bowel issue.  She is so strong and courageous and has handled this better than any adult would or could.  Thankful to God for looking after her and us and thankful for setting a little more sparkle in her eyes this evening.  The leak into the drain seems improved by holding the feedings so hopefully that can resolve itself without need of surgical repair.  Thank you all for the prayers, love and support through all of this.

Day 5 Post Op into Day 6...

Continued prayers would be greatly appreciated. Having a few setbacks which is not uncommon with such a major surgery.  Addison has a rare surgical complication called chylous ascites which means a major lymph vessel that carries lymph fluid, fats and triglycerides was cut during surgery so now there is a build up of lymph fluid and triglycerides in her abdominal cavity.  Dr. C says he has seen it a few times and is not overly concerned at this point. First line of treatment is to change tube feedings to fat free formula to reduce what the cut vessel is putting out into the belly and allow the vessel to heal itself over the next few weeks.  They were able to catch this by watching the surgical drain which is putting out a milky white pink fluid pretty excessively. Sent a fluid sample from the drain to the lab to confirm a high concentration of triglycerides in the fluid.  If it doesn't repair itself then we will address that later.  Also, she has still not been able to have a bowel movement and just now she had to have a catheter placed because she also is having trouble urinating.  This was a big big surgery and things like this are expected but they are still hard to watch.  We love you all and appreciate everything and each of you, just continue praying for our strong girl. Thanks.

Day 5 Post Op.....

Still waiting on the intestines to wake up from surgery and start working, they are being really slow to start.  If they would wake up and start working it would help her feel some improved. She is still doing just phenomenal considering what she had done. She walked to the library in the children's area today and has already made three laps around the third floor.  :)

Thanks

Just wanted to take a moment and day thanks to all who have sent Addison an Ecard. She really enjoys having them delivered to her room and reading them all.
Also, I wanted to thank my Grace family for the sweet care package Addison received this morning. The anatomy pictures were so cute, Addison smiled.

Day 4 Post Op.....

Addison is having a little bit of a rough day. Working on increasing tube feedings and trying to get her bowels to start working again has increased her abdomen pain.  Also, they've been switching pain meds around and the transition has been tough on her.  She is still doing amazing overall and still one of the best they've seen.  They did an xray of her belly this morning and Dr. C said everything looks great. We are very thankful the Lord lead us to this place and Dr. Chinnakotla, he's an amazing surgeon and man. Also, we are thankful for the wonderful people at UOFM Amplatz Children's Hospital, everyone has a true love and concern for the children here. 

3 Days in Pics WOW!

Day 3 Post Morning....

Last night went pretty well. They are  still trying to get her to be more alert but yet not in excessive pain. The medication dosing is a real balancing act.  She's had nothing but the most amazing care here. Everyone is extremely sweet, truly concerned and very knowledgeable.  Occupational therapy came this morning and made her walk to the bathroom, wash up and brush her teeth on her own, she didn't like that very much but it's necessary.  Baby steps, hour by hour,  day by day, thanking the Lord for each one, even the back steps. :)

Day 2 Post Op Evening.....

Today has been quite a busy day for our Amazing Girl, she has had the NG tube pulled, the Foley catheter pulled and walked up and down the hall twice. Still working to balance pain and alertness, but we will get there. She has done so amazing and has amazed everyone here.  Thanks for all the prayers; past, present and future.
Pics for the day include Bailey being so sweet and decorating Addison's door. You may want to click and save that picture as it is a rarity. Lol Just kidding Bay, I know you're a sweetheart deep down. ;p

Day 2 Post OP Morning....

As to be expected, recovery is a dance, a few steps forward and then one back.  Last night was a rough night, seemed overly medicated and was talking nonsensical, waking up very frightened from nightmares and was very agitated.  They reduced the sedative type drugs and it has really seemed to relieve most of the agitation and disorientation.  Also, the night has been a struggle to keep her blood sugars regulated. They've been out of the desired range most of the night. Going to address with docs when they round this morning.  Thanks for continued prayers and support, today is a new day and He is still in control.