A lovely Saturday

Van took me to Dallas ysterday, and Zane and Avi stayed with his mama while my mama took care of the homefront and transported Cade to and from school. It takes a village. Everyone had Shipley's kolaches, and that takes the edge off. My doc and PA conferred with many more docs, and they all decided to treat my lung issue as Graft vs. Host disease (instead of just waiting for pneumonia to clear up). GVH can reduce the elasticity of the lungs. A Fightin' Texas Aggie would say, "That's bad bull, Ags." I was put on a high dose of steroids (sigh...I was so close to being weaned off of them entirely), and a combination of three other drugs that have shown really great results in other patients. Also, there is hope on the horizon for mis ojos. There exists, somewhere in the great U.S. of A. new technology that allows a contact lens to cover the entire exposed part of the eye preventing this drying out and decomposition that can follow. It is also possible to produce a "serum" made from my own blood and put into little bottles for me to use as eye drops. They call it "snake oil" and sell it for $50 a pop. A bargain, really. For real, though, one or both of those options may work out. The docs and insurance are working on it. I go back to a special specialist on Thursday in Dallas to especially talk about the GVH in the lungs and have a new CT and breathing tests done. Oooohhhh....I hope I pass! Not sure how to study for this one... The last two days I've seen much improvement. Again, not sure if it is the one dose of the treatment regimine or the grace of God, or Him exhibiting his mercy through treatment...I still haven't teased it all out, but I will give him much thanks for being able to pick up a fallen Cheerio or holler across the house. It's the little things. My friend down the road treated my kids to swimming and me to a delicious poolside lunch today. Her son and Cade are classmates. She took care of us all and refilled my diet coke while timing the oven for the cookies. Luxury. All of a sudden we have an almost framed house, and many windows and doors. Van is in charge of picking out faucets, and he chose well. We selected a stain for the beams, a color for the metal roof, and a trim color today while Mom managed the kids and "Air Buddies". Whew! I'm putting myself in charge of picking out the bathtub--that is all that really matters. :) It is looking so very pretty. At the same time, it is really weird not buying the faucets at the Mercy Mission Evangelical Jump Rope for Diabetes garage sale, and stressful. I was able to walk up the steps to our prayer room, and that was really nice. I've had two healthier days in a row now. We reported to the kids that they have windows in their rooms now, and they were very excited. I described the pantry to Zane, and his eyes got big and round. "A special place just for FOOD?" I might need to hang a bell on that doorknob! I'm thinking that I'll be able to go to church tomorrow. That will be so nice.

The day to day

Mom made Van the Pioneer Woman's meatloaf from the cookbook that he gave me for Mother's Day. It was held together with bacon--the meatloaf, not the book, but that would have been okay, too. The meatloaf was accompanied by one of my favorite salad (of a list of two) that includes yummy avacado. She also made Pioneer Woman's blackberry cobbler and made sure Van got a piece. Last night, she made PW's lemon blueberry pancakes, and Zane just ate and ate with a sweet grin on his face. That kid can stick a smile for longer than anyone I know. He grins with certain foods, swimming or playing in dirt or any combination of these mentioned. Dirt+water= grin. Mixing food with dirt= grin. Swimming in food= grin. Mom, Zane, Avi and I all stayed home today. I got to play a couple of board games with the kids and watched them alternatively get into mischief and play like little angels. Zane and Avi see nothing unusual about crafting things out of toothpaste, hand soap and baby dolls. I don't know how many times Mom got them off of the kitchen counter, out of the refrigerator and helped them change their clothes after some tragic spill. Cade is decidedly addicted to reading. He announced himself at 9:00 last night into the livingroom with, "Oh, I finally finished it!", indicating the Boxcar children book in his hand. I didn't know he had stayed up, and was so thrilled that I ordered a box set of books for our travels on the spot. If I've got to feel puny, this ain't too bad.

rocket to the moon

Van is carting me to Dallas on Friday to see my Bone Marrow Transplant doc so he can look at my lungs, then on the 24th, I'll so see another pulmonologist that our local doc has been consulting with. Rumor has it that he is more specialized in Graft vs. Host disease and may have some insight into my weird "pneumonia". I just hope he can say "fluffy infiltrates" with as much charm. More tests. Urg. Mom, the kids and I went to see THE BEAM that we had been waiting for in the new house. It started raining, and the work crew amd my crew hung out under the "roofed" portion awkwardly not sure which language to pursue. They mainly smiled at my sweeties. I jaunted--I use that term loosely--into the drips to gather up a few pieces of scrap wood because it is just so cool. THE BEAM looks really great, and I'm glad we took the time for it to arrive from Florence....Texas. We took the scrap wood home, and Cade reserved some to draw portraits of his friends on to "sell" in social studies class as a "good" using coupons that his teachers will provide. I hope the permanent markers that we are providing won't be his doom. The rest of the scraps were used to build some type of rocket that Zane insisted needed to blast off to the moon and PLEASE, PLEASE, PLEASE could he have a match. Van winked and said,"I've got this one." He got a match, lit it, and counted down with my happy child. The literal child of seven years was insistant that Van needed to try again because Zane was being "for real". Avi was just happy to stack the blocks in various locations around the sculpture.

over the hills and through the cedars

Mom drove Avi and I to Utopia to see Dad this weekend and so Mom could have a bit of time at home. It went well, and we visited my great aunt. I had the oxygen tank on hand in case of emergency. Van wasn't real keen on the plan because Utopia is so far from doctors and hospitals, but he had a good time with our boys with baseball, fishing, swimming, church, and yardwork in Waco. Mom and I enjoyed the green countryside. It looks so different than last year's drought. The dam at the park looks so pretty after being cleaned out and some good ol' flooding. Avi, generally mild, is going through some kind of independence phase, so that was a bit tricky, but I think Mom and I still got some rest. Dad took Avi on a few lawn-mower rides and we went on errands. Since I was little, we've sung "to the dump, to the dump, to the dump-dump-dump" to the William Tell Overature. Wonderful simple time. I'm tired of thinking about me and taking care of me. I'm ready to do projects of all kinds and get plans in my head, and then I get up to brush my teeth, get just enough breath to do it and then go sit on the couch again. I'll see the lung doctor again on Friday. I'm grateful for Mom's company and for her sweeping and starting the dish washer at this moment. I'll get the stitches out of my left eyelid tomorrow morning, but it will still look pretty out of whack. My eye doctor feels like the procedure was a big success. The idea is to close off part of the eye so that it won't get too dry and damage my vision. If I ever start producing tears again, it can be opened up. I was geared up to have the right eye done to get it over with, but I think I'll wait until I have to because this has been quite an adjustment. A hard adjustment. Zane has Pre-K graduation at Parent's Day Out this week. I'm not ready for that at all. I'm not sure that he is either because he loves his teachers and classmates and has known them for so long. I still picture him as a chubby-cheeked toddler. He was such a cute baby, and now he is a handsome little five-year-old. Today, I am blessed to be a mama and to have a mama. I pray that Avi will get to have this beautiful experience in her life. She's already practicing now with caring for a stuffed alligator and a plastic Dora figurine.

Breathin' easy(er)

I generally have a general dislike for waiting rooms in general. However, on Friday, when I was still gasping, Van dragged me back to the pulminologist, and I giggled while waiting for the umpteenth xray. An 80 plus year old couple came in. The wife decided that she was going to read the ENTIRE medical history questionnaire to her vision-impaired husband. "DO YOU HAVE DIABETES?", she belted out. That started me laughing under my breath, and patted Van hoping to reach 80 with him and be so cute. "DO YOU HAVE ANY KIDNEY PROBLEMS?" "DO YOU HAVE LIVER DISEASE?" "DO YOU HAVE ANY METAL IMPLANTS?" I was about to loose it while Van gave me a slightly worried grin. "DO YOU HAVE AN I.U.D.?" At this point, I'm intentionally holding my breath to keep from bursting, and I excused myself while she was asking, "DO YOU HAVE ANY BODY PIERCINGS?" The lung doctor continued with his diagnosis of pneumonia with slow healing because of my immunocompromisabilityinmyself. All of the billions of send-off tests came back normal. I took a breathing treatment as part of my breathing test, and it didn't make a difference. Van and the doc sextupled (6 times?) my steroid, and booked me with a GVHD lung specialist in Big D just in case we're missing something, which we are not. Before I got home, I was breathing without the tank that I was dragging around and ready for a trip to Sonic for a DP float. By the time I got home after running a couple of errands, I was able to help a little with kiddos, and I was grinning in my leisurely bath. Before, my non-portable oxygen tank wouldn't get to the bathtub, so my choices were to quickly pant through a bath or have to stand in the shower which was even more difficult. Thank you, Jesus. The rapidity of the change was so extreme, that there was no medical explanation. I had not responded to the breathing treatments in the hospital (four a day!) and they actually made me so sick that I discontinued them, so there is no reason to think that it was just slow acting in me. The steroids would not have had time to take effect. I was so pleased that I stayed up ordering a mother's day present. Today, Van carted me to two baseball games and set up a chair in the shade (Cade played short stop and got 3 outs!) (Zane had a wonderful time conversing with the first base coach...and he played well.), and Mom took me to our youth group's garage sale. My mom bought a rock tumbler for Carly. Most of my family speaks love to one another in the form of pretty rocks. I scored two handsome quilts and a nice-sized rug for the boy's new room. Someone was very generous in donating this top of the line totally cute work truck/puppy decor. I thought it was time given that the boys' toes stick out of their baby blankets, and they have to stack them in a certain way so that they are enclosed. Somehow, I don't see them giving up the tiny blacnkets, though, especially those that are named. "Pretty blanket" and "Thomas" still have a few years to go. Maybe Cade will at least give his sister's pink fuzzy blanket to her now that she fits into it better and he has an alternative. The kids helped me order look-alikes of the special stuffed animals that have gone missing in the last few weeks. If a person saw the overflow in their room from stuffed animals, they would sign me up for "Hoarders" on tv, but after "baby jaguar" was not lost but "went to the hospital to get her bone marrow tested" I couldn't help it. Ouch. I was willing to go buy a real pony after that one. I got zonked around 5:00pm today, and I have been used to needing a nap by 8:00am, no kidding. I am so very thankful. Mom is amazing. She feeds us, does the laundry and keeps everybody occupied and happy. She's perfected smoothies for me--my main source of calories and protein. Well done. Kids are happy. They are enjoying baseball and enjoying their cousin being here. Van got them a kiddie pool with a slide for the back yard. We were avoiding buying one this year because no buyer wants to see it, but they sure do enjoy it on a hot day. All four were crammed in there taking turns on the tiny slide. We just screamed, "Don't come in the house!" when they neared the door for an hour or so and then finally let them in for towels. Rumor has it that my sister and her remaining two kids will come for a visit to unkidnap her middle child. I'm looking forward to seeing her. Maybe by the time that she gets here, I can release my Mom. Dad went back to Utopia to catch up and open the mail, but I figure he'll come give her eventually. The fried chicken that he picked up in Bandera can only last for so long. (And, of course, she is his favorite side-kick.) My eye that had surgery is healing nicely, but it still looks like I've been in a brawl with all the bruises from the hospital on my arms and my "shiner". My friend says just to tell people that I was the victor, and it will be okay. I don't know if Van will want me to go to church tomorrow because of my immunocompromisabilityinmyself, so we'll see. I can't figure out where the spellcheck is on this new format (blast it!), and the screen is still a bit furry to me, so I have a decent excuse for any typos.

couch tamato

Zane has a "ta-ma-to" (potato) plant in the garden that is growing better than anything I've ever planted. It's the only vegetable that we've grown this year, and he loves to show it off. Next year, that kid is planting our garden. I'm sore in my left eye, and I'm still on oxygen, so the couch has been my friend again today. Thankfully, the computer screen has been tolerable, so that's helped. I intend on testing tv tonight. I'm frustrated to miss out on outiings with my friends and their kids and not to be able to run to the store. Mom and Dad are running our circus. We borrowed sweet Carly (9) from my sister, and she has been so kind to help in all sorts of ways--bathing Avi, playing with little ones and just keeping us in her sunshiney mood. She is homeschooled, and she and Cade plan on working on homework together tonight. She helped him find the right website last night. That is so helpful. Carly, Mom and Dad may go out tonight to spend some special time together.

Eye bobs

I stayed 5 days in the hospital, and Mom and Dad have been helping a ton since then. I took a break from oxygen, but decided that I still need it for getting around the house. This morning, I have to go have an eye procedure. Chalk it up to GVHD again. My "eye bobs" as my kids would call them are crazy dry and don't show any signs of improving. Both of the boys have baseball games tonight, and I'm hoping to get to see them play. Zane winds up to the tee about 10 times before hitting the ball. It is hilarious. It looks like he has a strategy as he looks around the field for placement. Cade really has the hang of coach-pitch, and has impressed me with his new skills. I was hoping that baseball would be eliminated as a favorite, but it looking like they are really having fun. I have to admit that they look adorable in their uniforms. Zane and Avi are playing in front of me on the floor. Strawberry Shortcake now works for Texas A&M, and Avi is trying to coach Zane in the proper placement of hairbows. Cade is on a field trip to see the National Champion Lady Bears. He is very excited. What a wonderful experience. I forgot to tell him that they are tall, because he has just seen them on tv. It will be fun to see his reaction. When Van's mom was helping us over the weekend, they all went to see a Baylor baseball game. The kids wore their uniforms, and they had a great time. Despite my lack of knowledge in college sports, it seems that my kiddos are getting an early education.