T+116 Happy Memorial Day!

Well, no Memorial Day get-away for us! Torie is still here on 5D. Her weight is down to 13.7 kg. Her labs look good and the swelling is almost gone. Her diarrhea has resolved and she is tolerating her new tube feeding - Peptamin Jr.(which is delicious. Not!) - well. She is getting GenGraf(cyclosporine) IV because her levels were so low while she had the diarrhea. We are still dealing with her blood pressure. She is now on amlodipine, labetolol, enalapril, and nifedipine. Hopefully the combination of all these will kick in soon! She finally got blood on Sunday morning. It took the Red Cross 20 hours to match all the antibodies she's developed. Mom can't be here right now because she has a cold sore, so I've got sole hospital duty. Long days and nights! But the risk to Torie is too high. Because a cold sore is in the Herpes Virus family, Torie would never be able to fight off an HSV infection. She keeps asking "When Ma-Great come back to Torie room?" The docs aren't sure they'll be able to discharge her to RMH, because Mom will still have her cold sore there. I don't know how single parents do this!

We hope you all had a great weekend, and please send Torie prayers and happy thoughts that will lower her blood pressure....Vic-Torie!

T+114 Waiting for Blood..

Torie's hemoglobin dropped to 6.4 this morning and that means transfusion. However, she has antibodies in her blood now that have to matched and that can take a while. A really long while...
The Red Cross has been working on matching it since about 8:00 this morning and we're still waiting. I think we're in for another long night! Her blood pressure has finally gone down some today and her weight is down to 13.9 kg. She has had really bad diarrhea from the tube feeding they had her on. So bad that it is messing with her electrolytes. We turned it off this morning to give her guts a rest, and we'll try a new one tomorrow. She is still on a fluid restriction. The Silver Lining? She's learning measurements. "Torie have little itty bit water? Please?"

I'm hoping tomorrow her blood pressure will be better and tube feeding will go better. If her lab work cooperates, we may be able to get back to RMH Monday. Our friends Wyatt, Nicole, and Todd are heading home tomorrow. It is so nice getting to know them, and their support and prayers are appreciated. Again, it is both strange and wonderful to be part of this big Hurler family. We will miss them and wish them safe travels! Please keep sending prayers and happy thoughts...we are grateful for them all! Vic-Torie!

T+113 Normal Creatnine!

Torie's kidneys are finally remembering that we are not staying here in Minnesota for a vacation. This morning's BUN was down to 76, and Creatnine was 0.51 - back in normal range! Her weight this evening is 14.3kg, so she is below her admission weight. Hemoglobin is hanging out at 7.7, but her platelets are up to a whopping 236. All of her medicines are now being given through her G-Tube. However, Torie is now dealing with some high blood pressure issues. Last night she worked her way up to 150/85, so they're now playing with blood pressure medicine. She just got started back on Labetolol. It worked last time, so we're hoping it will again. She is feeling much better though, and we've even seen some smiles today!

We are hoping to have a Memorial Day Get-Away...from the hospital to Ronald McDonald House! We can drive the stroller, so we'll save lots of money on gas. And the traffic shouldn't be too bad, either. Whatever your plans are, we wish you a happy and safe Memorial Day weekend!

T+112 Still on 5D

I'm glad to tell you that I think we are finally getting somewhere! Torie's weight tonight is down to 15.0 kg, and her labs are looking a little better. Her BUN is 95 and Creatnine is 0.67. Albumin came up a little - 2.8 - and phosphorus is back in normal range. Her hemoglobin is still low at 7.7, but they don't want to transfuse until she gets down to 7.0. She's still on TPN but we're trying to increase her tube feeding so we can stop the TPN. Now if they'll just change her SoluMedrol from IV to one we can give in her tube, we could get back to RMH. She's feeling a lot better; today is the first day that she hasn't slept all day. She's still on the 750ml fluid restriction (that's about 2 pop cans for 24 hours) and today she's wanting to drink more, so she's a little cranky that we won't give her more. We don't know how long she'll have to be on steroids. It may be about 6 weeks for the Nephrotic Syndrome, but it may be a year to 18 months for the Hemolytic Anemia. But hopefully this is the last of the bumps in her road.

Our friend Danny has been in PICU for the last couple of nights, but we're crossing our fingers and saying a prayer that he'll be back on 5D tomorrow. And Baby Sydney got to go back to RMH the other night...Hooray! These 2 have had a rougher battle than Torie, but they're all winning. Throw them in the prayer pile please and keep sending happy thoughts! Thanks for all you do for us...Vic-Torie!

T+110 & 15.7

This evening Torie's weight is down to 15.7 kg, from 16.0 this morning. She has had lots of wet diapers today, so hopefully we're getting somewhere...finally! Her labs are staying pretty stable, and her hemoglobin came up to 8.3 all on its own. It seems that we are starting to see some results from all the steroids and diuretics. We're looking forward to being able to give all her medicines through her G-Tube so we can get back to RMH. She's still really swollen and not too perky, but tomorrow will be a new day and we'll see what that brings.

Please send extra prayers out to our friend McKenzie. She has had 2 cord blood transplants, and today got the news that neither of them have taken. Once again, I have to step back and realize how fortunate we are. We miss everyone, and we can't wait to get home. Thanks for following our journey...Vic-Torie!

T+109...Waiting for Steroids

Unfortunately, not much has changed here. We're all still waiting for Torie's kidneys to remember what they're supposed to be doing. She was started on steroids Saturday afternoon, but we really haven't seen much improvement yet. Dr. Orchard feels that it may take a few days. When Torie was admitted on Saturday, her weight was 14.7 kg. Yesterday morning she went up to 15.3 kg, and this evening she is up to 16 kg. That's almost 3 pounds of fluid. She is so swollen, and her skin is so tight, that she looks like a water balloon. She is on both Bumex and metolozone, and they increased the dose of both today. Her BUN and Creatnine continue to climb - 81 and 0.96 this morning - so they don't want to stress her kidney much more with higher diuretic doses. Her hemoglobin is staying at 7.9, which is good because they don't want to transfuse her until she is less than 7. Her kidneys can't handle the volume right now. Platelets are up to 203, though. That's the highest they've been since January! She doesn't have any energy or appetite. All she's done is sleep. Hopefully that's helping to heal her poor little puffy body.

Although we don't have a lot of good news right now, we are still grateful and fortunate to be where we are. I am especially thankful to have Kim and Pat, Joseph's parents, and Nicole and Todd, Wyatt's parents, to talk to. Joseph is weaning from steroids for Nephrotic Syndrome, and Wyatt had to deal with Hemolytic Anemia. I can't wait until we're part of the "Been There, Done That" group. We're also lucky to have so much support from our Ronald McDonald House family. Torie has had messages left on her door from Cowboy Danny and his family, and Baby Sydney and her family, and people at the House always ask how she's doing. And of course, all the happy thoughts and prayers from you. Thank you so much, and please keep them coming! Vic-Torie!

T+107 Happy Birthdays!

Today is a very special day to us...3 of our favorite people have their birthdays today! Torie's special friend Nick, and our twins Josiah and James, all turn 3 today! We were hoping to be home for Nick's birthday party, but we'll make it next year. And Josiah and James are home for their birthdays - the best present for their whole family. So Happy Birthday, boys! We are so lucky to have you in our lives and we love you tons.

Torie got re-admitted to 5D this morning. And we're back in the same room - 504 - for the 3rd time. She has continued to have less energy, she's even puffier, and she's pale. By this morning, she'd thrown up 3 times, and her temperature went up to 101.3. Her BUN and Creatnine are still rising; 62 and 0.75, and her hemoglobin is still 8.2. With her lab results from today, combined with the antibody she's developed on her RBC's, she has now been diagnosed with Autoimmune Hemolytic Anemia with Nephrotic Syndrome. Her body is breaking down her red blood cells and she doesn't have as much circulating volume. With her kidneys not sorting the good and the bad like they should, she holds on to extra fluid in her tissues. Her blood cultures are negative so far, and her chest XRay looks good. So, given all that, she feels rotten! She's started on SoluMedrol, a steroid, and hopefully that will have her feeling better soon. Our friend Joseph had this same thing happen, and he felt better in just a couple of days. Thank you again, Kim, for all the support. But, Silver Lining - Torie was seen by a renal doctor today instead of waiting till Tuesday!

Well, I tried to use as many 3's as I could in this post, but I think I'm all out. Thank you for all your support and prayers for Torie. Please keep sending them to her - she's needing a few extra right now! Vic-Torie!

T+106 & Still Here

There's not much new here to report. Torie's labs are continuing to reflect Nephrotic Syndrome, and she has an appointment with Nephrology on Tuesday afternoon. She had an ultrasound of her kidneys today, so that will give them a little more information for when they see her. They increased her diuretic today and added another one, but we aren't seeing much difference. She's pretty puffy...not quite "a busted can of biscuits" like Josiah's Daddy said back in February, but getting close. I think the worst part is her total lack of energy. She doesn't feel like playing, and it's hard to get her to even walk. She just wants to be on the couch, and she dozes in and out quite a bit. We got home from Clinic today and she said "Torie just wump inna bed." We're back to going to Clinic every day for labs and that wears her out, too.

We're discouraged and frustrated with this set-back - we were so looking forward to home - but we are trying to stay positive. Being here we get to keep up on how all our friends here are doing, and somebody fixes us dinner every night! We'll keep taking one day at a time, and hopefully soon Torie will do her quick turn-around day like she always does. Please send extra happy thoughts and prayers for her. Right now she's needing them, and they have gotten her so far.

Thanks for keeping up, and for keeping her in your hearts...Vic-Torie

T+104...Nephrotic Syndrome

It's official - Torie now has Nephrotic Syndrome. Her kidneys aren't doing what they're supposed to, like filtering the good from the bad. This is another complication of BMT. Like there aren't enough. Her lab work this morning wasn't great...Albumin down from 2.5 to 2.2, BUN and Creatnine up, urine protein up, hemoglobin down. She got an albumin infusion today and they increased her Bumex dose. Tomorrow she will probably get RBC's, but she has an antibody now, so hopefully it won't take forever to set up. We have to get in with Nephrology (kidney docs), and then they will see if steroids are the course of action. This same thing happened to our friend Joseph, and we are thinking of him and his family a lot. Thanks Kim and Pat for your support!

Some people are pushing for us to come home and treat this in Grand Junction. While I know Dr. Mike can manage this there, I'm not quite ready to take Torie on a 1200 mile road trip. I have such complete trust and confidence in Dr. Orchard that I'm willing to wait here until he gives us the green light to head home. They have gotten Torie this far and I just want to do what is best for her. We miss everyone so much and we can't wait to be home. Please keep up those prayers and happy thoughts for Torie...those will get us home sooner than anything else!

A huge thanks to Kati for the Bottoms-Up Balm. Torie has had a pretty sore fanny the last few days, and this has helped more than anything else...and if it's good enough for Kati's Grandbaby's fannies, it's good enough for Torie's!

Thanks for following along with us on this journey. We love your comments. Knowing that you read this and care so much for Torie makes our days easier! Vic-Torie!

T+102...More Bumps in the Road

Just when I thought we were going to dodge the "Day 100 Set-Back", Surprise! Torie's labs this morning weren't so great. She's been puny all weekend and she's getting puffy. Her weight was up from 13.7kg on Friday to 14.4kg this morning. 2 weeks ago she had protein in her urine, and I've been worrying and asking about Nephrotic Syndrome, but her albumin levels weren't too bad. Today her albumin dropped to 2.5, BUN and Creatnine are rising, and she hasn't been potty-ing much. They increased her Lasix dose and they're thinking she may have Nephrotic Syndrome. She'll have another Echo tomorrow morning and then another appointment with more labs on Wednesday. If her labs aren't better, they'll probably try a few days of steroids. So, in the meantime, we'll wait here!

We're disappointed to not be leaving, but this is absolutely the best place for her to be right now. And remember those silver linings...Wednesday night's movie is Shrek 2, and Torie loves Donkey! Please keep sending those prayers and happy thoughts because they make a huge difference...Vic-Torie!

T+100!!! National MPS Awareness Day

Today is 100 days since Torie's stem cell transplant and National MPS Awareness Day, so we are wearing our purple to show our support for Torie and our Hurler family. There's not much new here. We got quite a bit of packing done, and shipped a bunch of stuff home. Tomorrow we'll start cleaning and continue packing. How did we get so much stuff? Oh yeah - everyone has been so thoughtful and caring to think of us!

Since I don't have much else to blog about, I thought I'd tell you about the"Beads of Courage". These are for kids who go through life-threatening and challenging ordeals. There is a tally sheet and we keep track of procedures and triumphs. Torie has a ton of beads! Here are the colors for each procedure that she's had...

Beige.....Bone Marrow Biopsy

White.....Each day of Chemo

Orange.....Hickman insertion

Blue.....Clinic visit

Magenta.....Unusual occurrence/ER visit

Brown.....Hair loss

Lime.....Isolation/Fever/Neutropenia

Tortoise.....Lumbar puncture

Purple.....Morphine/TPN

Black.....Pokes

Light green.....Tests/Scans

Red.....Transfusion

Aqua.....Tube insertion

Yellow.....Each night of hospital stay

Silver.....Dressing changes

Bumpy.....Medication challenges

Star.....Surgery

Rainbow.....Physical, Occupational, or Speech Therapy

Textured Silver.....Chaplain visit

Special Selection.....Act of Courage, Extraordinary experience

As you can see, Torie has more of some than others. Especially those yellow and purple ones! She loves stringing her beads and she's very proud of how many she has!

Please say a prayer tonight for all our Hurler family and our other friends. This experience has opened my eyes to so many different things that I've never known before. Most of all, the impact that friendship, love, support and prayer has on all our lives.....Vic-Torie!

T+99 Dippy Eggs!

One of Torie and Papa-Great's favorite things is having sausage and dippy eggs together. This morning Papa fixed her her first dippy egg in 5 months, and she dove in! Hooray! Every day she is feeling better. Clinic this morning went well, and her labs look good. Hopefully nothing changes by Monday, and Tuesday morning we'll hit the road HOME! Josiah and his family had an uneventful trip and made it home safely. We miss them so much, but we are so happy for them. Rylie and Jade and Lyle left today to have a vacation up at Lake Superior. We never get to spend enough time with them, but we have years of playdates ahead of us.

Tomorrow is National MPS Awareness Day, so please wear purple to let the world know how much you have supported Torie and our family, and for all our Hurler friends, both near and far!

Vic-Torie!

T+98 & Back at the House

Torie got back to RMH about 1:00 this afternoon and the first thing she did was take a big nap in her own (kinda!) bed. She was very glad to see her "friends" in her bed, especially Bitty Baby. (I'll try to get some pictures tomorrow so you can all meet Bitty.) It never takes Torie long to get back to her funny self, and tonight was no different. We had dinner with Rylie and Jade and Lyle, and Mom had gotten me a piece of cake. She put it between Torie and I and Torie reached over and slid the plate in front of herself. She took a big bite of cake and just turned and grinned at me! She's still quiet with other people, but she didn't stop talking about Rylie until she went to bed. And speaking of Rylie and bedtime, last night Mom and Dad were getting ready to leave the hospital and Torie told me to go away. Here's our conversation:
"Go away, Mama."
"Don't you want me to stay with you tonight?"
"No. No way."
"Do you want Mama-Great to stay?"
"No."
"Papa-Great?"
"No."
"Are you going to be by yourself tonight?"
"No way."
"Who do you want to stay with you?"
"Rylie."
We should've have taken her up on it! Mom, Dad, Jade, Lyle, and I could've partied all night. But a party for us would be being in bed by 7:30! And yesterday morning when I asked her what she wanted for breakfast she told me "Watermelon and Papa-Great"! She's so funny. She always brings a smile to our days. And sometimes to our nights!

T+97 & 93%!

Of all the blog entries I've made over the last months, this is probably the most joyous...Torie's bone marrow biopsy results are back and she is 93% engrafted! I wish I had the words to express our feelings when we heard this. After all Torie has gone through, it feels like she's not just fighting the battles, but finally winning the war! I wish she could understand how strong she is, and how well she has done. One of my goals in starting this blog was for her to one day be able to read it and realize what a journey she's been on. She still is not out of the woods, but at least she won't have to have another stem cell transplant!

We are still on 5D, trying to get off oxygen and get some poo moving. Hopefully we will be back at RMH tomorrow. Rylie and her Mom and Dad, Jade and Lyle, got here last night, and we saw them this evening. Her transplant was 2 years ago, and seeing her gives us so much hope for Torie's future. Rylie goes to preschool, takes swimming lessons, and is no different from any other 3 year old. She runs and sings and dances and is so full of life and laughter. There are so many similarities between Rylie and Torie - and we only hope they continue! I wish Josiah and his family could have met Rylie, but someday we'll all get together. Here is one more silver lining that we've been given...We have met some of the most wonderful people in the world, and we have made life-long friends. And we have you. Thank you, thank you, a thousand times. Your care, support, and prayers have gotten us so far! Vic-Torie!

T+96 Another Rough One

Torie has had a pretty rough day, but the 1st day after surgery seems to always be the worst. She's had quite a bit of pain from her hernia repair. She's never had a surgery like this, and I think she just doesn't know why it hurts so much, especially when she coughs. We're hoping she can get off oxygen tonight and that she doesn't have any more fevers. As long as her cultures stay negative and she follows the rules, Dr. Tolar thinks maybe she can go back to RMH tomorrow. Papa-Great got here today, and she didn't feel much like talking to anyone. She did tell Mom this afternoon that "Mama Cheryl bring Papa-Great back to see Torie in a little bit." And she was right...I did! It's so nice to have him here, and back with Mom.

Josiah and his family got packed up and headed back to Tennessee today. They have a long trip ahead of them, but nothing compared to the journey they've been on for the last 5 months. Just a couple more days and they'll be HOME! I'm jealous. But we'll be next! Thanks for sending your well-wishes and prayers..with them, Torie can do anything! Grow, Cells! Grow! Engraft! Vic-Torie!

T+95 Surgery Is Over

Torie is back on 5D (504 even - same as last time) and doing well. Intubation went excellent! They got the breathing tube in and secured in less than 5 minutes. And only 1 try. Hooray! They replaced her ear tubes because they had become displaced. The umbilical hernia repair went well, and her G-Tube was place without any problems. The surgeon was a bit concerned because of her liver being large, but everything went fine. Dr. Orchard gave her 3rd dose of Intrathecal Enzyme, so now only 1 more to go, and that will be about mid-August. He also did a bone marrow biopsy and we should get results of that Thursday. They took Torie's NG tube out in the OR and it was so nice to see her whole sweet furry face!

Tomorrow is such an exciting day...Papa-Great will be here, and so will Riley. Josiah and his family get to go home! We will miss our forever friends so much, but we are very happy for them. Josiah has some extra fluid building up around his heart again so he has another Echo scheduled at Vanderbilt in Nashville on Friday. We are wishing and praying for a safe, healthy, and uneventful trip home for them. Please send your prayers and happy thoughts to them and to Torie for a speedy recovery! I hope a week from today I'm telling you that we are just about packed and ready to go! Grow Cells, Grow! Engraft! Vic-Torie!

T+94 Happy Mother's Day!

There's not much new going on here at RMH. After the last 2 days being rainy and cold (we didn't get the 3 inches of snow that was forecast), we had beautiful weather for Mother's Day. There was a great brunch this morning and an excellent dinner tonight. We were sad that Torie didn't have her Mommy here, but Torie has been taking very good care of us.

She has gotten really good at scraping plates into the garbage and putting the dishes in the sink. Sometimes she gets so excited about scraping plates that she wants to start before we are ready, but good help is hard to find!

Tomorrow we check in to surgery at 7:30 for Torie's 3rd dose of Intrathecal Enzyme, bone marrow biopsy, hearing tests, abdominal CT, hernia repair, and G-Tube placement. When she had the fluid drained from around her heart, we had the same anesthesiologist that we had in September that had such a difficult time intubating her. He said this time that he could actually visualize her vocal cords, so hopefully intubation tomorrow will go well. She will be admitted to 5D after surgery, and we're hoping for just 1 night this time. Please send extra prayers and happy thoughts that everything goes well tomorrow, and that her bone marrow biopsy shows better engraftment than her blood tests have. My Dad is on his way here to help us move back to Colorado. We can't wait to be on our way home. Torie is so excited to see her Mommy and Daddy and her new house. Thank you for all you've done for Torie and for us...we appreciate every bit of it! Grow Cells, Grow! Engraft! Vic-Torie!

T+ 92 The Minnesota Twins

Torie had another Echo yesterday and we haven't heard any results yet, but no one came in and told us to get admitted, so that in itself is a good sign. We also got some lab results yesterday, some good, some not so good. Her liver enzymes have gone down and her other chemistry's are looking good. Her WBC's are staying around 5.2 with an ANC of around 3300. Platelets continue to go up - 197, and her H&H is pretty stable. Her engraftment levels are low again. CD3 dropped down to only 8% and CD15 has gone up to 92%. Dr. Orchard is going to do a bone marrow biopsy on Monday while she is in OR to get a truer picture of where she's at. He's not really sure why she dropped after being at 16%. We are just hoping and praying that her Enzyme level is still in normal range.
While we were at Clinic and PT, some of the team members of the Minnesota Twins came to visit RMH. Although we missed them, Josiah and his family gave us such a great update that we feel like we were there. We got together to get some pictures yesterday afternoon...

These are The Carman's...Jim, Josiah, Rachel, Leah, James, Hannah, and Sara. And that's Torie in the middle. Words can never explain how grateful we are to this awesome family for sharing their faith, strength, and friendship over the last months.

And these are The Minnesota Twin Triplets! Josiah, Torie, and James. Will the real Twins please stand up?

T+90 & Roller Toasters

When Shaun was here in March, we went to Mall of America and Torie was totally enthralled with the "roller toasters". Then we found a "Things To Do in MSP" magazine and she has been reading it every day to see the "roller toasters." Well, today we finally went! Nickelodeon Universe is a 7-acre amusement park in MOA. We were very lucky to get ride passes from RMH. Unfortunately, Torie wasn't tall enough to ride any of the roller toasters, but she was very happy with the log ride that went "downa hill splash inna water!" She also loved the balloon ride and the carousel.

Yesterday was her 3 month Un-Birthday and we are so happy to be this far. She's doing great and hopefully we won't have any more "bumps" in the road. Tomorrow we have Clinic for lab work at 10:00, PT at 11:00, Speech at 11:30, and an Echo at 3:00. I don't think my engagement calendar has ever been as full as hers! Everyone wants her. And barring bumps, we are hoping to be home 2 weeks from tomorrow. Please keep up those prayers and happy thoughts for Torie and for all our friends here...Grow Cells, Grow! Engraft! Vic-Torie!

T+88 Silver Linings

Torie had another appointment with Dr. Orchard today. He is very pleased with how she is doing so far. Her Echo from last Thursday showed a "trivial effusion" so we got to stop her Aldactone (diuretic) and she will have another Echo on Thursday. Her labs still look pretty good except for her liver enzymes -they jumped into the 300's, and her BUN was up a bit. Silver
Lining: we got to stop her VFend and Celebrex. And since she her blood pressure has been so stable, her Labetolol dose got cut in half. Dr. Orchard doesn't want to make any changes to the Lasix until after OR next Monday. She will get her 3rd dose of Intrathecal Enzyme, MRI of her brain, CT of her abdomen, G-Tube and hernia repaired then. She will have to be admitted to the hospital, but hopefully just overnight. Today they drew blood to check her engraftment level and her Enzyme level. Those results will take a while to get back. Dr. Orchard also said that if Torie continues to do well, and nothing unforeseen happens, our last appointment will be May 17th. 2 weeks from today and we may be able to start heading home! Hooray! Yesterday marked our 17th week since we've been here. We are SO ready. These last 2 weeks will probably seem longer than all our time so far!

Josiah had his repeat Echo today and although he doesn't have any more fluid building up again, he has to stay another week to 10 days. Silver Lining: We get to keep him and his family as our next-door neighbors for a little while longer! And maybe he will still be here when Rylie comes next week. Torie has told us "Rylie come to Ronald McDonald House and play with Torie." She is very excited, so I hope this surgery and hospital stay doesn't get in the way of her plans! We're pretty anxious to get her engraftment level back. We are praying she is still heading the right direction. Grow Cells, Grow! Engraft! Vic-Torie!

T+86 Happy May Day!

No news is good news, or so we hope. Torie had her Echo on Thursday and we haven't heard from anyone so we are assuming all is well. I'm sure they will tell us more at her appointment with Dr. Orchard on Monday. She is doing great, and up to her usual shenanigans! Josiah had his Echo on Friday, and showed enough fluid around his heart that he had it drained Friday afternoon. He is back next door tonight and doing just fine! His Echo was at 10:00, and at 10:10 Torie looked at me and said "It's Josiah time." And no, (advanced as she is!) she can't tell time. I'm not sure what she meant, but at this point I think she knows more than most of us do. Weird, huh? I have no doubt that she and Josiah have a connection. Josiah's Pa-Paw, Bob, left to go home to Tennessee this afternoon. It has been such a pleasure to get to know him and he will be missed.

We ventured out to a Scandinavian specialty store today and had a good time looking at all the things from "The Old Country." We did stay far away from the lutefisk though! The last couple of days have been so windy that we haven't been able to play outside and we were all getting a bit stir crazy, so it was nice outing.


Torie got these cute Minnie ears from The Beckerman's for her birthday. They were in Disneyland and it was so awesome of them to think of her.

Aunt Lettie sent the Princess jammies and Torie thought with her ears and her pj's that she was ready to go to Disneyland too. She loves it there and I can't wait to take her back!

I'm so glad that we took her to Disneyland in September before we started down this road we're on. She talks about it still. Uncle Eddy put together a DVD from the video that Tom took while we were there. There were days (about +18 to +22) when she felt so rotten and all she wanted to do was watch "Torie in Disneyland, please Mama" over and over. I wonder if she just wanted to go back to when she felt good and hadn't had to go through any of this yet. After all, it is The Happiest Place on Earth!
Grow Cells, Grow! Engraft!