Quick update

Well, we didn't get the van today, but we will on Monday! Yea! I was okay either way, since our van is still running; but a brand new van is pretty exciting! Sumana will have a power door to let herself in and out and we will have a complete bumper to bumper warranty for 5 years/100,000 miles. I told a friend that I would NEVER choose a blue van, but this one is not as 'blue' as the Kia we showed earlier. The Nissan is more blue-gray . . . definitely a pretty color! It also has bonuses that we NEVER would have chosen, but were basically 'thrown in' with the deal (like a DVD player/screen!)

Sumana is back in the swing of exercises and cough-assist practice. I'm going to 'put it in gear' . . . it's less than 4 weeks til surgery! This week she has a repeat sweat test, a follow up with the pulmonary doc, a pediatric eye check up AND she gets her new leg braces (all in ONE day!) It'll be nice to have all these appointments out of the way. She sees Dr. Sanders for her pre-op appointment a week from Monday. It's coming up quickly! Please pray with us that Sumana will work hard at her exercises this next month so she will be as strong as possible going into surgery.

Ode to the Big Green Van

Sigh. It's both an exciting and sad day. We closed on our van loan and got a better rate than we expected. But, that means we say 'goodbye' to our big green van tomorrow. In spite of the thousands of dollars we've put into it, I think it is probably my favorite of all the vehicles we've owned. It has hauled us to Maine, North Carolina, Washington, DC, Cincinnati twice, Chicago and Oklahoma and home again. We've been able to cram in camping stuff for all of us and cart loads of kids all over the countryside. It's been a good vehicle.

But, then I remember the sliding door that's about to fall off, the brakes that aren't there, the electric window that goes down, but not back up and the AC that in a summer like this year's you wonder if it's just the air from outside or if it's really the AC working. (ha, ha).

Sumana came home from camp today by way of PT. Miss Kristen aptly nicknamed her Cranky Camper. I think she was WAY overtired, but cranky nonetheless. She, too, is excited about the new van, but when she thought about saying goodbye to the only van she's really ever known, she almost started crying! (Get that girl to bed!)

Sumana made a sock puppet at camp and learned how to perform with it. At the closing chapel today I got to see her in action with her purple puppy. How cute! She also brought home lots of beautiful crafts and, of course, stories! Maybe I can get her to tell some for a future blog.

Lovin' Camp!

Sumana is doing GREAT at camp. I've talked to her a couple of times and one of her favorite activities is PUPPETS! I can't wait to see what she's doing with them. They're having a closing chapel service and inviting parents to attend. I guess she's been having fun at the lake and craft time. Of, course, she is socializing like crazy . . . making friends left and right. I think it's been a fantastic experience for her.

While she's been gone, I've enlisted Andrew's help to heave-ho a lot of her stuff. She's an even worse pack rat than me! It'll be a lot easier for her to find stuff she's looking for now. (Unless we 'heaved' it!!!)

On the van front, things have been coming together super fast! I got a phone call at 7:45 this morning informing me that Sumana is still eligible for SSI, but a couple more documents were needed. I'm hand delivering those items tomorrow morning and, as long as things are still a 'go' for the SSI, we go to close on the loan at 4:30. We'll have to see if things continue to come together smoothly. I'll keep you posted!

Camp!

Well, Sumana went to camp and had a blast today! Since she had woken up with a headache, we decided to have her come home to sleep tonight. She doesn't have a headache tonight, but is really tired. We plan to have her stay at camp from tomorrow through Thursday. Her counselor is basically a one-on-one aide for her and knows to call us if Sumana overdoes it. (See the picture of Sumana with Miss Amy . . . they're on the YELLOW team!)

Sumana is soooo excited about camp. She couldn't get over how FUN it was! She was only there 6 hours, but boy, did she enjoy it! Please pray for safety and good rest while she's at camp.

'Exciting' Day

Well, it started out calm enough . . .helping collect money at my friend's moving sale . . . lunch at the Finger Lakes Culinary & Wine Center with another friend who was visiting for the weekend . . . a pleasant stroll though the Waterfront Arts Festival . . . Sigh . . . It was just BEAUTIFUL and soooo relaxing. But then, Gretchen called and said Sumana had fallen at camp, hit her head twice and thrown up. That was the end of our relaxing afternoon. After a phone conversation with Sumana's primary doctor, we decided to only go to the ER if I didn't like how she was looking and acting. Unfortunately, when I got to camp Sumana was laying flat on the grass and looking HORRIBLE. Her eyes didn't look right, she couldn't walk without help, she complained of a severe headache . . . not good. Needless to say, we left immediately for the hospital.

On the way we called her neurosurgeon to run things by him. Thankfully, he said that even though she had hit her shunt site twice, it was very unlikely to have dislodged it. So, we made it to our local ER and had her checked out. Long story-short, she threw up again, had a CT scan and was released within 3 hours. The 'God-thing' is that the ER doc is also on staff at Strong and was able to consult her records from there. It was such a relief to have access to her info and scans without having to travel an hour. We're soooo thankful!

So, she needs to take it easy tomorrow and if she's feeling better by Monday noon-time, she can try going to camp. The hard part is that she can't do anything strenuous or anything that makes her nauseous or headache-y. I have a feeling she'll need to be in her wheelchair quite a bit. I have talked with her counselor already and she has been planning on helping Sumana with the different activities at camp anyway. Now, she may need to push Sumana around in the wheelchair for a day or two. Sigh . . . I'm tired of 'exciting' . . . I'm ready for some 'boring'!

Where has the week gone??!!!

I can't believe it's Thursday night already!! This has got to be one of the speediest weeks in a VERY long time. Sigh . . . . let me just sit and catch my breath (actually, I need a refill on my Rocky Road ice cream!)

OK. I'm back with a quick re-cap of the week. Andrew had an ingrown toenail removed Tuesday at 8:15 morning (too early for both of us!). Then, I found out that Social Security needed income proof for Jeffrey, so I made copies and drove them to the Geneva office. Since we were in Geneva, we had a WONDERFUL visit with Aunt Ruth. She was moved from Strong to an acute rehab center. She was dressed, hair fixed and had just eaten a lot of her lunch! It was sooo good to see her improvement in just a week or so.

When we got home that day, I had a message from Social Services about taking a 3 year old boy for a few days. (Oh, that's right . . . THAT's where my week went!!!) Within a half hour, he was at our house. That night we celebrated my Grandma Dorman's 86th birthday. We actually sang Happy Birthday FOUR times! (other July and early August family b-days!) Nee-nee and Sumana helped blow out the candles FOUR times!!!

Wednesday, Gretchen had her work physical at 8 am! (too early for ME and the three year old!) I had a Stampin'Up! workshop that evening, so between prep and the actual event, that took up about 4 hours! Thursday morning we kept up the 8 am appointment schedule with dental cleanings for the oldest 3 kids. Then, Sumana, 'Neenee' and I hurried to PT. We spent the afternoon at LeTourneau while I gave swim tests.

We've had EVEN more going on than that, but I'm tired. I'm going to bed! Tomorrow is Gretchen's road test and I'll be helping a friend with her moving sale. Meanwhile, Greig and some of the staff and volunteers from Crosswinds are in New York City for a tech-y kind of conference. I think he was glad to leave this morning, after a crazy evening with the three year old!
On the 'van front' we're still waiting to hear about Sumana's SSI. I should be able to get some sort of indication tomorrow. The Cash for Clunkers starts tomorrow, so I'm curious to see if God has a new van in our future, or if we keep the Big Green Van! We appreciate your continued prayers for God's will in this area!

Better Day in Rochester

Today was a BIG improvement on Saturday. Greig and I did some test driving and comparing and reached a decision on the van. Now, before it's really final, we need to get confirmation from Social Security about Sumana's SSI. As long as there is no danger of her losing it, we should be able to proceed with the 2009 Nissan Quest. Please pray with us about this big decision.

Later on we went to visit Miss Christine for a brace casting. Check out the pictures! Her old braces were about 2 inches short on her calf and her toes were right to the end! We were hopeful that she might graduate to a shorter brace on the right foot, but not yet. Both of her feet pronate (I think that's the term for rolling in on her ankles), pretty significantly. She chose a new butterfly pattern with PINK straps (of course!)

Then we kept on travelling up to Greece to see Giana Grace. She has put on some weight since we saw her in April. They're looking for a Fall date for her to get her VEPTR, but, as we experienced, no definite date is in sight. Anyway, it was great to see her and her mom again and get to meet her three brothers and dad! Giana seemed to love having Sumana right in her face, playing with her. Two little girls with spina bifida, getting VEPTRs soon, just having fun together. What a unique blessing!