Micah is doing Amazing! :) Happy, happy, happy. Got out of hospital yesterday, doctor appointments today and flight home to North Carolina booked for tomorrow! So thankful they got things worked out and my little nephew feeling better. Can't wait to see my sis back in NC. Love you guys! P.S. Happy 18th Birthday to Bailey!
Thanks for all the prayers for Micah and his family. At the moment he seems to have maybe turned the corner and on his way to getting out of the hospital and back to NC. They changed his jtube over the weekend and he had continued vomiting and nausea. So, the problem all along seems to possibly be that he has an allergy to the jtube formula. They said they have never seen this before but the tremendous change in how he feels when the feeds are stopped speaks volumes. They are going to stop jtube feeds and let him take things orally and maybe, just maybe he could be on his way home by the weekend. Praying this is the answer the doctors and family has been seeking. Love you Micah and Sis and can't wait to see you!
Please be in prayer for my nephew Micah. They have put him back in the hospital in Minnesota because of his continued nausea and vomiting. The plan is to do an endoscopy today or tomorrow to take at look at the the stomach, small intestines and the point where the two join, the pyloric sphincter. Also, prayers for his mom, my sister, Dawn, as this recovery is taking quite a toll on her as you can imagine seeing your child sick for this length of time. Thanks for continued prayers for Addison and our family but please lift up Micah and his family when you pray. Thanks and God Bless.
Addison is still doing amazing after a week at home. Her blood sugars are still a little roller coastering but other than that she is awesome. Micah seems to be turning the corner and hopefully on his way to getting back to North Carolina.
Well firstly I must confess that I told a little white lie or two in the last blog.....but it was all for a good reason.....so Addison and I could surprise Thomas and Bailey like they did us a few weeks ago......We are HOME! :) :) :-) At Addison's appointment Wednesday Dr. C was so thrilled with her progress that he cleared us to come home to finish the last few weeks of post surgical recovery with notes to her pediatrician and a local endocrinologist. We will have to go back to Minnesota at the six month mark and once a year for follow ups but for the time being we are back HOME! She no longer has any tubes or holes coming out her body....other than the ones she should lol and she looks phenomenal. Still on lots of meds and working through the diabetes but she will get there. Thank you all for every prayer, kind word, monetary gift, card, and all other acts of love and kindness, we are blessed beyond measure to have such an awesome support system. Humbled, Grateful and HOME........
Well just finished three day whirlwind of doctor appointments. Saw our surgeon Dr. Chinnokotla today for first time since surgery, he is recovering from surgery of his own. He says that she looks amazing and he can't believe how awesome she is doing! Thank you Lord! Wants to see her back next week after a week of no tube feeds to make sure she is maintaining weight. If weight stays in check then he'll pull the gj tube and then possibly go home the end of next week! Going home early.....priceless. Thanks for all the prayers and love sent our way, not very long till we are back in NC, HOME!
Three days of fats on board and no belly swelling! :) Still early to be sure but it looks like the chyle leak is fixed. Thank you Lord, the Great Physician/Plumber!:)
Addison and I went to the Como Zoo and Conservatory here in Saint Paul Friday and had a really awesome day! It is a very nice zoo and the weather was perfect. Micah seems to be doing a little better each day, so thankful for that. Missing NC and family and friends. Also, had an awesome surprise in the mail, a very good friend shipped me a good ole southern pound cake, and it is phenomenal!
Six weeks....wow.....it's hard to believe it's already been six weeks since Addison's surgery.......on the flip side it's hard to believe it's only been six weeks.
Addison has been amazing through this whole process. She is such a strong, beautiful young lady and I am very proud and honored to be her mother.
There will never be enough thank yous Thomas and I could say to express our gratitude for everything that has been done for our family. We are blessed and humbled.
The Lord has brought Addison and us through this very difficult time and answered so many prayers. He is a
Good God!
Fats were added to her diet yesterday so now we we'll just watch and see if her belly swells. If it does then the cut lymphatic vessel isn't healed, if it doesn't then it is, I'm counting on the latter.
Returning home is getting closer and closer!
Pictures today provided by my silly daughter on the kiddie playground here. Lol
Thank you for answered prayers.....Micah had follow up appointment with the surgeon yesterday and she changed all sorts of meds around and he already seems improving this morning. :) Thank you Lord! Still have to watch and see, but a really great start.
Addison is still doing awesome, pain from time to time but nothing like before surgery. :)
We are off to the movies today to check out Despicable Me 2, hope everyone back home is happy, healthy and loved. :)
Today was a doctor day. Addison had three appointments today, as did Micah. Addison gets to try and add fats back to her diet on Thursday. The hope is that the cut vessel has repaired itself at this point. If it isn't fixed, when she starts to eat fats her belly will swell up. Then we'll have to revisit surgical options to repair the vessel. Pray for no swollen belly this weekend please. Also, please pray for Micah, they are discussing putting him back in the hospital, his nausea and vomiting is still pretty severe and he has dropped two pounds this week. They will know more after seeing the surgeon tomorrow. Happy Birthday to Caroline! Miss you guys! Wishing I was Dorothy with her red slippers and could click my heels to get back to North Carolina.
The visit from Thomas and Bailey was amazing! Love you guys sooooooo much! It was so hard to take them back to the airport yesterday. :( Thank you Lord for giving them safe travel back home! Addison is doing so great, it was so good for her to see her sister and daddy! Hopefully, another three weeks and we will be back home for good. I know you shouldn't wish time away but these three weeks can just disappear for all I care. :) Hope everyone back home is happy and healthy!
Notice in the picture lol, Addison is terrified of the Ronald McDonald statutes all over the place! LOL. Can't say that I blame her.
HAPPY, EXCITED, THRILLED.......YAY! THOMAS AND BAILEY SURPRISED US AND JUST SHOWED UP YESTERDAY!! Addison and I are so happy to see them! Thank you to all who made this possible, this is the best medicine in the world. Addison and Bailey are so sweet, they have missed each other so badly. Bailey would never admit it but you can see it in her eyes. :) Also, seeing them together confirms that I thought Addison had hit a growth spurt while here, they use to be same height but now next to each other Addison has a good inch on Bailey, sorry Bailey. :p No more time to blog, got some important family memories to make :) Thank you Lord for this awesome surprise and their safe travel, and please bless those who made this surprise possible. AMEN
Had a nice day in the sun. Everybody was feeling pretty good so we went to a beach on Lake Harriet. It was a beautiful day for it and the kids enjoyed putting their feet in the water.
Really thankful the Lord has looked out for them and us through this whole journey. He truly is a Mighty God. Thankful for all the prayers and love from each of you as well. Hope everyone has a wonderful July 4th!
Today was one of those all day doctor fests. Between Addison and Micah we had six doctors appointments and an hour at the pharmacy refilling meds.
Excellent news today, the doc feels Addison is doing well enough to go to tube feeds only at night and not twenty four hours now, Yay!
She is so glad to be free of the carrying the feed pump during the day. It's the little things :)
Miss you terribly Thomas and Bailey....
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!
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.
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.
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.
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.
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!
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.
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
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.
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.
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.
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.
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
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
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.
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.
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.
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!
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.
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
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. :)
Addison Land Room C5121
UofM Amplatz Children's Hospital
2450 Riverside Avenue
Minneapolis Minnesota 55454
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.
