Friday, July 31, 2009

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.

Thursday, July 30, 2009

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.

Wednesday, July 29, 2009

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!

Monday, July 27, 2009


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.

Saturday, July 25, 2009

'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'!

Thursday, July 23, 2009

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!

Monday, July 20, 2009

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!

Sunday, July 19, 2009

Frustrated Plans

Well, the day started out well. We actually made it to our first appointment EARLY (that doesn't happen often!!) But it went downhill FAST from there! We were test driving a van and I thought of a nice route that would take us past the apartment Greig and I lived in when Jeffrey was born.

It looks very much the same. So, my old Paychex building was 'on the way' back to the dealership so I slowed down to show Sumana where I used to work. That's when the bottom dropped out in our day. I pulled up behind a big truck at a T-intersection and then heard blaring car horns, heard a crash and then SAW a black convertible whiz up a bank and head up a privacy fence and stop ON its SIDE. I parked the van, grabbed my cell phone, dialed 911 and jumped out of the car in rapid form (recently certified Professional Rescuer in action!).

By the time I crossed the street, others were there helping the victims. They were all conscious and the convertible driver (a 300+ pound man) actually climbed OUT of his car! I took over bystander who had been at the 'other' car. It was an elderly couple (70-80s) and since I didn't notice anything immediate danger (other than being in the middle of a road!) I just talked to them and helped them gather their personal belongings that had flown all over. Thankfully, a doctor was in one of the passing cars, so she took over for me and I was happy to get out of there. We were DONE with our test drive!
I had so much adrenaline in my system that I couldn't remember where we actually needed to go (it has been 18 years!) I turned left, turned around and went back, then turned around and went the way I originally turned. UGH!!! Anyway, we got back late and we were late for everything else the rest of the day!

We checked out van colors for the Sedona (at a different dealership) and by that time, it was too late to visit Giana. Thankfully, we still had time for a Chinese buffet before we picked up Gretchen at the airport. Of course, I forgot about the construction at the airport, so we were late meeting Gretchen. That's the way the day went! I am soooo thankful for safety, though. Only God knows 'why' were perpetually late yesterday . . . but I'm sure He was keeping us safe through all of our 'adventures'. Thanks for putting up with all my rambling!

Friday, July 17, 2009

Stranded again with Mom

Oh, brother! I've been driving our Oldsmobile this week to save on gas and check it out for Gretchen (her driving test is next week!). Well, as we're driving into the village of Naples, our airbag (??!!!) light went on. I was going to drop off Andrew for Jeffrey's concert, so he was in the front seat with me. He was shielding his face and nearly hyperventilating (it was actually kind of funny, but I was a little worried about the same thing on the driver's side!!!) Just as we were nearing the center of town the car cut in and out and in, again. I decided I needed to park FAST, so I swerved quickly onto a side street and was able to park just barely off the street in a side lot.

I've been suspecting the alternator for MONTHS and when I called Greig he reminded me he had recently replaced the battery. So, we were pretty sure it was 'toast' and we should have it towed. However, after being on the phone for 20 minutes with the motor club, I tried to start it again and IT DID! The customer service rep stayed with me on the phone as I drove a block, a 1/4 mile, a 1/2 mile, and finally up to 55 miles per hour and on the way home!! Woo-hoo!!! I asked her to cancel the tow and Sumana and I prayed all the way home! Just as we drove past our neighbors' house the red lights came on again and we coasted into our driveway.

Poor Sumana! She's been in more car accidents and mishaps with me in just 5 short years. When she talks about all of our 'stories' I'm sure people wonder how I still have my license or why Greig lets me drive our kids all over creation!!! LOL!

Well, tomorrow we're driving the big green van! We're test driving some more vehicles and looking at paint colors (of all things!) We're also planning on visiting our friend, Giana (whom we met in the PICU at Strong . . . I asked for prayer for her recently). Then, we're off to the airport to pick up Gretchen! Whew! The week flew by . . . I bet it did for her in Mexico, too!

Wednesday, July 15, 2009

One on One with Great Grandma Vera

Well, Andrew, his friend Jeff and I were treated to a 'pre-opening' showing of The Half Blood Prince, courtesy Andrew's orthodontist! How cool is that??!! Dr. Rheude sure knows how to speak the language of his patients. Two theatres were full of popcorn-munching, candy-eating, soda-slurping tweens and teens, all with thanks to Dr. Rheude. (Should have had free toothbrushes thrown in for the way out!!!) It was an incredible experience!

Anyway, I said THAT to say THIS: Sumana doesn't 'do' PG-13 or anything remotely scarey, so she spent the morning with Great Grandma Williams. Sumana always complains that Andrew gets to have one-on-one time with Grandma, but not her! Well, she got her wish today! In addition to the endless chitchat, she also went to chair exercise class with Grandma. She used the balls and weights and tried a lot of the exercises. I guess one of the balls had princesses on it, so Sumana named ALL of the princesses for the class to hear.

As always, she was a hit with the older folks and was asked to come again. Sumana has a way of making friends wherever she goes! Grandma was having lunch with some friends at a local restaurant so when I met up with them Sumana got to meet MORE people!!

Tomorrow is PT and a day of cleaning with mom and Miss June. Later, Sumana's cousins are coming over for dinner and an evening visit. It should be a fun, tiring day!

Monday, July 13, 2009


What fun we had today! My sister and her 4 kids joined Sumana and me for a morning of blueberry picking. The kids were great. The weather was great. The blueberries were great. The company was even greater!
If you're not familiar with blueberry picking in the Finger Lakes, here's how it goes: When you arrive at the farm you get a bucket with a hole cut in the lid. This is to sit on and give you a place to drop your berries as you pick them. Once you have your bucket, you climb on a big wagon that is pulled by a tractor. You take a bumpy ride down a hill or two until you reach the day's picking area. The farm workers show you which bush is 'your's' and give instructions. The main one is to pick ALL the ripe berries on your bush. Kerri, the kids and I were all on ONE bush. We probably picked for nearly an hour and got over 6 pounds off that puppy! Now for families of 6 each, that isn't very much. But the kids had fun. Kerri and I will have to return without kids or bring some of my older kids to help pick next time so we can stock our freezers. Yum!!! There's nothing like fresh blueberries!
I think it's a quieter week as far as appointments go. Just PT twice. I also work at LeTourneau tomorrow giving swim tests tomorrow. It should be a beautiful day to be at the lake!

Saturday, July 11, 2009

Our new car . . . maybe???

Well, I put a deposit down on a van today. It's a 2009 Kia Sedona with a whopping 34 miles on it! Sumana can get IN and OUT of it all by herself, since it has power sliding doors. Yea!!

Now, a couple of 'ifs' remain as far actually bringing it home. One of the 'ifs' is that the cash for clunkers program will have to allow an improvement of 3 mpg from our Astro. Secondly, Sumana's disability income will have to stay intact. I got a letter today from Social Security saying that they want to verify that she is still eligible. This van is specifically for her use and progressing independence. (If I had been able to choose, it would have been more of an SUV-type!) I can't believe she wouldn't continue to be eligible, but I want to find that out BEFORE we get the van!

Anyway, we won't even be able to get the van for another couple of weeks. Please pray with us that God's will is accomplished. Everything has come together well so far, but we'd rather have a roadblock come up and stop us at this point if it's not in God's perfect plan.

Well, Sumana and I got up at 4:30 this morning to take Gretchen to the airport. She flew out at 7 am for her week-long missions trip in Monterrey, Mexico. We had a couple of hours to wait til the Kia dealership opened so we went and visited Aunt Ruth again in the hospital. I wasn't sure if they'd let us visit (official visiting hours are 11-8). But, we walked right in and I said that we were there to help Aunt Ruth with her breakfast and they let us go right in!

She still doesn't have much of an appetite, so breakfast consisted of an Ensure milkshake. But, we helped encourage her to get most of it down before we left. I was really thankful that she was in a private room, because it was 7 am and we were laughing a lot! She's in such good spirits and is very alert . . . full of stories like usual. Today she told us about how 'things' were so different when she was Sumana's age. She and her younger sister were sent to a neighbor lady's house and didn't know anything was going on until a delivery man asked them how they liked their new baby brother (my grandfather!) I guess they didn't stay much longer with the neighbor . . . they wanted to get home and see their new surprise! How different times were, huh?? Today our kids not only know when a baby is coming, they often have pictures and know if it will be a sister or brother!

As an update on Giana . . . she is being treated for a staph infection. Poor little lady! At least they are able to treat her at home. I think her one year birthday is this week. Please pray that she'll be happy and healthy to celebrate!

Thursday, July 9, 2009

She can BREATHE!!

Wow, what a machine! Sumana got trained to use her new cough-assist machine yesterday. You can actually SEE her chest rise and fall with the extra air that is inhaled and exhaled. That may not seem like much of anything, but if you've ever watched Sumana, her chest doesn't move very much unless she really exerts herself or is pretty sick. She's starting with 6 cycles of 6 once a day for a month, then we'll increase to twice a day. Hopefully, we'll also be able to increase the pressure. With every breath her lungs are inflated more than usual, so it's a really good exercise. Sumana can already feel the machine helping her get mucous out of her lungs . . . YEA!!

Get this . . . there are only TWO cough-assist machines in the whole hospital! Because of this, the respiratory therapist recommended that we take 'the beast' with us in August. I'm sooo thankful that our insurance covers the rental of this machine. I think it will make a big difference in Sumana's health.

So, I'm continuing to try to coordinate Sumana's appointments through the University of Rochester. Today I was able to get her scheduled for an eye exam with a pediatric eye doctor 'in the system'. It was so easy to give them her name and date of birth and they had EVERYTHING at their fingertips! I think I have ALL of her care in the same system (except for her wonderful, local pediatrician). I really hope this will reduce the chance of something 'falling through the cracks' in her care.

By the way, since we were already at the hospital, we were able to visit my 95-year-old Aunt Ruth. She broke her upper femur this week and we were happy to see her sitting up less than 24 hours out of surgery. We had a nice visit and it was good to hear her telling funny stories and laughing with us like usual. What a wonderful, spunky, young-at-heart lady! That's the way to be at 95!!!!

Monday, July 6, 2009

Her 'Social' Calendar . . .

Well, our social butterfly has many upcoming engagements thanks to her mom's phone calls today. In addition to PT twice this week, she gets to visit Miss Donna at the Pediatric Pulmonary Lab on Wednesday to learn how to use her new cough-assist machine. Even though it's supposed to be a monster of a machine, I'm looking forward to her learning how to use it. Our hopes are that she can use this machine after her surgery to keep her lungs clear and any other time she happens to get a cold. Oh, how wonderful it will be if we can avoid pneumonia this year!!!

She also has an appointment in a couple weeks with Miss Christine to get fitted for new braces. Then, when we get to August, she has a new pre-op appointment with Dr. Sanders; a repeat sweat test, a pulmonary check up, and a dental check up to round things out. I'm anxious to get ALL of her appointments out of the way before her surgery. It makes for a busy summer, but at least she'll be as ready as possible for the surgery and the 6-week recovery.

And, by the way, our little friend Giana is HOME!! Her MRI was normal, so they've put her on antibiotics 'just in case'. Please remember to pray for this sweet little one. They still don't know what the fever and bloodwork questions were about. Praise God they're home!

Sunday, July 5, 2009

Busy girl!

Sumana has been busy this weekend. She had a dinner date with Papa and Nana on Saturday, then church at Crosswinds. Today, she played boom whackers at Middlesex Baptist. They are hollow tubes that the kids hit on their heads, legs, hand . . wherever! After church she watched Jeffrey and his band (A Decent Tuesday) practice. (I was busy cleaning rental houses today, so I missed all the fun!)

This week I need to make phone calls. Sumana's cough assist machine is ready when she is, so we need to schedule an appointment to learn how to use it. Also, I'm going to see if she can have her eyes checked this summer instead of trying to do it in October. (It probably won't work, though, because I think she has to wait a year for her insurance to cover it). I found out about a bummer on Thursday. Sumana's pre-op appointment has been 'bumped'. I don't know what that means. Because of the holiday, I haven't received a call back from Dr. Sanders' office. Hmmmm . . . is it postponed til later in the day??? is it cancelled for the day?? I'm pretty bummed that Dr. Sanders' office didn't let me know. I found out through Sumana's orthotic's office. Well, that's another phone call.

Sumana is back to PT twice this week. Yea! It's still a challenge for me to get her to do her exercises. It was so easy when we were on our school schedule' this summer doesn't seem to have any 'schedule'! UGH!!!

Saturday, July 4, 2009

Please pray!

Just a quick note to ask if you'd pray for our little friend, Giana. She's the little girl (not quite 1), we met in the PICU before Sumana's first surgery. She's back in the PICU with an unexplained fever and puzzling bloodwork. Please pray for wisdom for the doctors and specifically that God would protect her from a bone infection. She is due to get her VEPTR in September. I know how long the wait is for us to get to Sumana's surgery August 27. How difficult it would be to encounter a problem that would set her back further! My heart is just aching for this family . . . but their faith is strong and their trust is in the Lord.

I'll try to update more tomorrow night about Sumana. She's been a busy, happy girl!

Wednesday, July 1, 2009

She Sleeps Great!

Yea! Sumana passed her sleep study with flying colors! I guess she slept enough that 'they' felt like her readings were accurate. Whew! No bi-pap mask, no sleep study on Sunday . . . yea!!

Because of her restrictive lung disease and spina bifida, she will return in a year for another sleep study. As I understand, if she begins to have respiratory issues, it will show up first in her sleep patterns/quality. So, if they monitor her yearly, they should be able to see potential trouble before it becomes troublesome!!!

We tried out Kias and Toyotas today. My absolute favorite is the Kia Rondo. It has European seating . . . which in my language means the seats are deep enough cover my leg from the back to the knee. VERY comfortable and surprisingly affordable. Sumana's favorite is the Toyota Sienna. It is lower to the ground and she can open and close the side sliding doors BY HERSELF! (they're power sliders) If the Cash for Clunkers doesn't pan out for us, I think a used Sienna might be a good option for us. We need to get Greig in on this to get his two cents!

And, finally, our former foster daughter was officially adopted today. She's been with her family a whole year; but it's FINAL . . . she's got her forever family. It was so special to watch her with her parents and big brother. However, I got a lump in my throat more than once. We love her sooooo much and seen her through soooo much. It's kind of like this chapter of our lives is really over. We hope to stay in touch, but I guess today was a little bittersweet for me.