MRI moved up

Even with the new pain medicines Jess has been in as much pain as she has ever been. The good news is that she was able to move up the MRI to tomorrow and Dr. Bruel to Wednesday.

I keep waiting to write "Jess enjoyed pool therapy today." So far I haven't been able to. The latest hang-up happened Friday when they told us it would cost $400 a day for pool therapy. At first we thought our share of that would be $80 since they said our share would be 20%. Then it got interesting the insurance would only pay $50 of the visit-- which would mean us paying $350. Thankfully we have a really good case manager at Jessa's insurance who is working on it-- I'm hoping I will be able to write "Jess enjoyed pool therapy soon."

The best thing about today is someone came to our house today to cut Jessa's hair (thanks Karen). Here's proof that she looks good.

I thought you might like to see some of the modifications that have been done to our house. The door to this bathroom was widened quite a bit.

The bathroom was all carpet before. Here you can see the new tile.


Here you can see the wood laminate in our bedroom. It's also in the hall and living room. I took off the bed frame to make it easier for Jess to get into bed.

Finally you can see the sweet ramp that my friend Alex made. Of course if Jess improves her wheelies a bit, she may not need any ramps anymore:)

Pain Management

It was pretty cool timing today because Jessa's back has been hurting more but she had a scheduled doctor's appointment with Dr. Bruel, her pain management specialist. After evaluating her, he felt that she has probable fractures in her sacrum. That's the part of the back that extends below the lower back to above the tail bone. Jess has an MRI scheduled on July 7th and then a consultation with Dr. Bruel on the 10th to determine her treatment. If her sacrum does indeed have fractures in it-- Bruel will most likely fill up the new cracks with more bone cement. In the meantime he is rotating her pain meds and adding a medicine that helps with muscle spasms.

Jess starts her pool therapy Friday. We knew it was coming, but it feels so good to have it scheduled.

Katelyn left for two weeks for Portland, Oregon today to be with her grandparents today-- I think it will be a great break for her (she helps out at home so much) and she loves being spoiled. She is almost past the age of "unaccompanied minor" so I quizzed her about what to do when we got to the airport. My diagnosis: she is growing up because she aced the test.

Wheelies

Yesterday Jess did the ultimate thing in her wheelchair: she learned to pop-a-wheelie. Now she can make her wheelchair go over lips by herself, but more importantly she can look cool doing it.

We also celebrated PoPo's (Jessa's grandpa) 78th birthday yesterday. We went to Babe's in Burleson where they have a tradition of dressing up whoever is celebrating their birthday like a chicken and making them doing the chicken dance. I must say at 78 he looks much more spry than I do at 31. He definitely enjoys life to the fullest.

Jess is finishing up OT this week-- so we're hoping she can be in the pool this week. Jadyn is going to basketball camp at the Y, Bryn is going to VBS, and Katelyn is helping out with crafts at VBS. Katelyn is perfectly suited for it: she's great with kids, super organized, and has a knack for making crafty things look great.

Jessa's back has been hurting lately. The hardest thing has been sleeping well at night although she slept great last night. My back isn't feeling to well either. It's not to surprising that I hurt it. I am constantly bending down to move her feet, helping her transfer, lifting her wheelchair in and out of the car, etc. The good news is that Jess needs less assistance every day which cuts down on my back-bending and I am seeing a great chiropractor.

I can't believe how many people bought Our Journey with Jessica shirts. I see people wearing them all the time and they all have stories. They tell me about who they saw wearing them and they get to talk about how they know us. For me they are a constant reminder of people's prayers and love for us.

Wedding Pictures

Jeremy is a Big Wrestling Fan-- We're Holding up the #4 Like the 4 Horsemen. Jeremy is Second from the Right

Very Cute Flower Girls

A Wedding

Today-- was a pretty neat day for us. Jess and I did a bible study for college a few years ago and one of the guys from that group got married today. I was a groom's man and Jadyn and Bryn were flower girls. Jeremy (the groom) is from Oklahoma so we tried to be family to him while he was down here. In turn he became family to us-- the Yikes call him Uncle Jeremy. Hearing the wedding vows today reminded me of how serious they are: "In sickness and in health, 'til death do us part." Jess and I have both had to give up our own plans so instead of my plan or her plan we have our plan. By necessity Jess has become more dependent on me to make the right decisions and do the right thing. It frustrated me when I took a lot of time planning something completely out only to have her disagree. Now I realize that unless I let her tinker with my plans they cannot be our plans. For example for the first time yesterday I forgot to put Jessa's foot rests for her wheelchair in the trunk before we went to the rehearsal. When I couldn't find a wheelchair that we could use Jess wanted to stay in the car, but I wanted to bring her inside without the footrests. She ended up staying and Jeremy's dad went out to talk to her while we rehearsed. After that she came to dinner with us even though she would have rather stayed in the car again or gone home. Not too long ago we both would have ended up mad and made two separate plans, but out time together is too short not to be making plans together. We will be doing life together through sickness 'til death parts us. Let me close with a Yikes story. When we were eating rehearsal dinner at Spring Creek, Bryn asked what animal ham comes from. She was eating ham. I don't think our kids will ever be vegetarians because when Jess nervously told her that ham comes from pigs, she smiled big, said "Ooh-hoo-hoo" and took a big bite.

Thanks for the wait

Thank you faithful blog reader as you waited for out latest post. We decided to get laminate wood flooring put in to help Jess get around easier. It was supposed to take two days which would have been Saturday and Sunday, but they just finished up today-- four days later. The good news is we have been staying at Jessa's grandparents' house, better known as MeMaw and PoPo. I for one have enjoyed hot breakfasts, MeMaw doing our laundry, and help with Jadyn and Bryn. Jess I think has enjoyed the power of suggestion. All she has to say is that she feels like something (for example a root beer) and PoPo comes back with it (for example-- and this really did happen: three different types of root beer in 2 liter, 16 oz. bottle, and can). Jessa's health has been a mixed bag. She is getting stronger and can now easily transfer almost all on her own. However, she does not sleep well and started taking her pain medicine again at night which helps her sleep better than when she wasn't taking it. Also worrisome are her feet-- which feel like they are tingling as if they have fallen asleep. I am grateful that she will be able to start on chemo soon after she has a tooth pulled. She has been getting out a lot which can wear her out, but I think has been the best medicine for her. Most of it has been fun stuff like a Woman's bible study, but some of it has been icky stuff like the root canal she had yesterday (yes, she still has to get a tooth pulled too). Katelyn went to camp over the weekend and had a blast mostly because of the high school kids from church who Katelyn adores and have taken her under their wing. Jadyn and Bryn are doing Camp Thurman this week. It's a day camp so they come home at night to get baths-- it has a reputation for two things: being fun and making kids dirty, so the baths are really a necessity. I for one had a great Father's Day on Sunday other than Katelyn not being there. I hope you fathers did too. Let me close with a Yikes story-- it may not be that funny to you but it struck me as funny. We sent Jadyn and Bryn with two piece Takinis to Camp Thurman. We're actually a bit partial to one-pieces but Jess wisely thought that with a two-piece they wouldn't need help going to the bathroom. Those of you that have dealt with young girls in one-pieces know exactly how much help they need with them. Well anyway, Jadyn looked at Bryn's swimsuit top and said "I like your topping."

The zapping is done!

Well, just as gas prices are tipping over $4.00, I do not have to drive back and forth to Dallas for radiation any more! I finished my last round Monday, and received a lovely certificate assuring me I am done! I will not miss the daily trek at all. The radiation was for my back (where the surgery was) and my right pelvis and leg. I do not have any pain in my right leg anymore!

Camp songs anyone? Jadyn and Bryn have spent all week at a fun camp at my aunt Sandy's school. They had a blast! Katelyn excitedly left for church camp today in Oklahoma. The yikes will attend a local day camp, Camp Thurman, next week. Wow! I am glad we have not had one speck of summer boredom...yet!

I am working on setting up water therapy. I have one more week of home health and then, hopefully, transition right into the pool!

Speaking of a pool, I found a great hotel for our San Antonio vacation in July that has an ADA Wheelchair lift into the pool! I might look a little conspicuous getting into the pool, but the time I will be able to spend with the girls will be worth it. To think last year I was concerned about how my bathing suit looks. Now, that is not a speck on my radar as I try to adapt to our new normal. I am grateful for the opportunity to make memories with the girls this summer.

As we are close to Father's Day, let me just say that I have the best guy around. When I think of what he did not sign up for, but does as if he wants to, I am so humbled. I often wonder if I would be as patient and grateful, loving and encouraging if the roles were reversed. I hope so. But, I don't have to hope with Jake. He does it all. And, all the while being such a great, hands-on dad too. The girls and I all feel so fortunate that God has blessed us with a husband and dad we admire, love, and respect.

Much love,
Jess

Worn Out

I'm feeling pretty good, but Jess is plain tuckered out. We got up early and took the Yikes to MeMaw's (Katelyn had spent the night with a friend). Then she came with me to finish end of the year stuff at my school. Young Junior High has been very supportive of Jess and everyone was super excited to see her. It kind of looked like she was a rock star and they were her fans from the way they surrounded her, minus the autographs of course. From there we went to see Dr. Haley. Jess got an infusion of medicine to strengthen her bones and set up a time frame on starting chemo. On top of everything else Jess is going to have some dental work done. The chemo she has been taking over the last three works has had a negative effect on her teeth: she will have one tooth pulled and a root canal on another one. Since Sinitinib effects the growth of new blood vessels, Dr. Haley felt it best to wait until after Jessa's teeth are taken care of. From there Jess went straight to radiation where she finished her second to last treatment. The radiation table is too high to do a slide board transfer, so I have been transporting her via a two man lift. This takes nerves of steel on Jessa's part as she does not like to be picked up (not even to be carried over the threshold after we got married). Then after radiation, we went out to eat in a Dallas neighborhood pizza place (Sal's) that we had read about while we were in the waiting room. Then we went to the airport to pick up her dad (Bob) who came to visit from Portland, Oregon. Then to MeMaw's again to pick up the Yikes. One of our big concerns has been going over steps. Jess really wanted to be able to go over steps because she will have to go over a few steps to get into one of her friend's house for a bible study this summer. We made it-- but I think I scared Jess. Something about wanting me to try it with an empty wheelchair first. After Jess forgave me, we went in and visited for a little bit. Then on to Katelyn's soccer game. From there we came home and had a late dinner. Jess loves getting out and seeing people, but she's going to sleep good tonight.

The Pool

Jess loves the water. She loves going to the beach, pools, and hot tubs. There is not much that can ruin her day if she has a chance to soak in a bubble bath. Lately she has been able to take showers sitting down on a tub bench, but for Jess it can't compare to being immersed in water. Today, I got to see Jessa's face light up. She met with Dr. Star for a check-up on her leg surgery and to take her stitches out. The stitches I'm sure felt great to be out with his nurse removed them. However, her face absolutely beamed when he wrote her a prescription for pool therapy. For Jess that means walking and being able to wallow in water. A winning combination if you ask me and bonus: she'll be able to do her pool therapy in Arlington.

Bye-bye pain meds

Today was one of those good/bad days. I took the Yikes to Gilda's house (a cancer support group in Dallas) which was great for them and great for me. I really enjoy the people in my group-- we all have struggles but somehow manage to support each other. It seems like this would be like a drowning man teaching someone to swim, but really it is more like being in one boat and taking turns at the oars. The bad thing is that I forgot that good friends of ours had arranged for me to go out with the guys tonight. The wives were going to take care of Jess and the kids and I was supposed to go out with the husbands. Only I forgot and went to Dallas-- go ahead and stamp "Dork" on my forehead. Jess felt good enough to stop taking her pain meds (yippee!) but she did a lot of transferring (moving across her slide board to somewhere else like from her wheelchair to the couch) and OT wiped her out. She went to bed early. I backed up our car out of the garage this weekend and caught our bumper on the edge and left it pitifully hanging off. Today I found a place that will replace it for about $650. Our deductible is $500 so I'm thankful that I can just pay the $650 and not have to worry about my insurance rate going up. The way I see it I only have two choices be OK with the bad stuff being mixed in with good or throw a pity party. The thing is I don't think they make balloons with "Take pity on me" and I would be pretty embarrassed ordering a cake that says "Boo-hoo for me." Instead I will realize that when Jesus said blessed are you that mourn you for you will be comforted, he wasn't saying that I am blessed because Jess has been touched by cancer. He was saying I am blessed because so many people pray for us and our comfort to us and if we mourn we do not mourn alone. Thank you for being on the journey with us.