Tuesday, June 30, 2009

She's going to camp!

Well, it looks like Sumana is going to camp! I spoke with the program director yesterday and they seem to have a plan. The camp is at LeTourneau Christian Center on Canandaigua lake (BTW, I'm their waterfront director this year). She will stay in the 'lowest' cabin (so, hopefully, limited trips up the hill!) She has chosen crafts, puppets and music as her tract options. Her counselor has had experience with special needs kids, so it should be a good fit. It also won't hurt that Gretchen is living at the camp this summer and I will be there part of every day.

Tomorrow will be a busy day. We start with an appointment to look at a Kia Rondo, then some errands at Sears. Next, we're off to her follow-up appointment at the sleep center. Then, hopefully, we're on the road by 12:30 so we can attend Crystal's adoption. We hope to visit some friends after that and then finally go home! Whew! It should be a full and fun day!

Sunday, June 28, 2009

The Week Ahead

Well, this week doesn't look too bad. Sumana only has PT once and only one medical appointment. Just a reminder, Wednesday is her sleep study follow-up with a possible mask fitting. Right after that we rush back to witness our former foster daughter's adoption. Sometime this week I need to squeeze in a Red Cross course online; but things are looking a bit quieter, so I think it'll work out.

We had fun with Sumana's cousins yesterday. We took all 8 kids (Kerri's and mine) to have their pictures taken. Our favorite photographer, Miss Stephanie, had quite a workout! She got some wonderful shots, though. Afterward, Sumana and I ran some errands and looked at some new cars. I don't know how the Cash for Clunkers is actually going to pan out, but we qualify. We've looked at the Mazda 5, the Toyota RAV 4, the GMC Acadia, the Nissan Quest, and a bunch of others. When I say 'looked at' I mean Sumana climbed in; Sumana climbed out. That was our first main criteria . . . a pretty good place to start. Once we have a short list, Greig can come along and give his opinion. We appreciate any information you all may have. Feel free to e-mail me. At this point, we're looking for a 6+ passenger with a V6 engine.

A few words from Sumana: " I really want to go to camp. I want to make new friends and get away from my brother!! [Andrew] I want to have fun, but then come back and sleep in my own bed. Did you know that I can walk without ANY crutches??!! I can walk from one side of the living room to the other. [about 10-15 feet]"

Friday, June 26, 2009

Technology is Great! (this time!)

I just LOVE how the University of Rochester connects all of their providers with each other and the hospital. All of Sumana's specialists can see what tests she's had done, what tests are planned, and future appointments that are scheduled. This was a plus today when the sleep center was able to coordinate Sumana's follow-up visit with a possible bi-pap mask fitting. I guess the results usually take 2-3 weeks; however, they can see that Sumana is scheduled for VEPTR surgery in August, so they are rushing things so everything will be taken care of on Wednesday, the first. Yeee-haw!!!

I often have longed for days gone by . . . usually the 1800's. Our country's moral decline often overwhelms me and I wish for simpler, purer times. However, in the 1800's Sumana would not have even survived. And, life was sooo hard. I really do enjoy our modern conveniences, but I guess I just need to take things in moderation. Life can get so frenetic. I'm participating in a weekly Bible study on the book of Daniel. It's amazing how closely it parallels our culture. Daniel took the hard road more than once to uphold his values. It's challenging me to consider what compromises I make, instead of standing up for what I believe. Hmmmmm . . . .

Anyway, I finally got word that Sumana was approved for a cough-assist machine. I'm going to call on Monday to see if there is any way to get her instruction from her respiratory therapist on Wednesday, before her sleep study appointment. If we're driving to Rochester, I like to make our trip count!

As a 'camp' update: the Hole in the Wall Gang camp is full for this year (Paul Newman founded and arranged funding for this FREE camp. However, each disability has its own quota and spina bifida is one that fills up the quickest!) Anyway, I have been in contact with Family Life Ministries (FLM) and it looks like there is a volunteer that has experience working with special needs kids and is interested in helping Sumana. Hmmmmm . . . that's another call to return for Monday. Sumana is very excited because there are different tracts to choose from: science labs, music, puppets, crafts, drama, and sports. She's interested in everything except sports (surprise, surprise!). There is a local Rotary camp for disabled kids, but it is only a week before her surgery . . . too close for mom's comfort!!! Also, the FLM kids camp is only 3 days . . . a good introduction for a 10 year old! And, it doesn't hurt that mom will be working at the waterfront!

Tuesday, June 23, 2009

Wires and Stickers

Wow! What an experience! Sumana had wires and stickers all over her head, torso and legs for her sleep study. . . even a heat sensor and monitor to check the heat and pressure of the air going in and out of her mouth and nose. How cool is that?
Now, you'd think Sumana would have trouble sleeping with that get-up, but I was the one who didn't sleep very well. The nurse was only in a couple times, but there's something about having a camera in your room that makes it hard to relax and go to sleep. We were 'woken' at 5:30ish and were on our way by 6:15 am. As soon as we got home, I took a 1 1/2 hour nap. That was just what the doctor ordered!
We go back next Wednesday to get the results and, if needed, we go for a second sleep study on July 5th. From what I could see on the printout we were given, her oxygen levels remained fairly constant. The peaks and valleys for her chest and abdomen monitors were seemed very inconsistent. But of course, that's from my limited knowledge. I guess we'll leave the diagnoses to the medical professionals!

Monday, June 22, 2009

Off and Running!

Well, I hope I enjoyed last week to the fullest, because this week is turning out to be an exhausting one. I took Sumana to the sleep dr./pulmonary dr. today and because of her upcoming surgery, they really want to determine if she has oxygen problems while she sleeps. So, there was a cancellation for TONIGHT and we are taking it. I just got home, helped Sumana shower, got the pizza in the oven and will soon be off to Rochester AGAIN!!

As I was reviewing Sumana's health history with the doctor, I realized that she is a pretty complicated kid. Not as complicated as some kids, I'm sure, but enough questionable stuff to make doctors wonder about her various symptoms. It will be good to get answers and be done with this testing phase. However, on the off chance she does has 'issues' I know this is a very important step to take. But, I must admit, I am very tired. I hope I can sleep tonight. However, after reading the prep sheet, it looks like that's not in my job description. UGHHHH!!! I'll try to get pictures and let you know how everything went tomorrow. Please pray for wisdom for the doctors and that Sumana will be at peace through the sleep study. Thank you!

Sunday, June 21, 2009

Happy Father's Day!

Well, we had a very delicious, relaxing dinner at my sister's house this afternoon. All 6 of her family, 6 of mine and 2 grandmas and a grandpa were there. What a nice crowd we made! Greig was able to get there to enjoy the whole meal WITH us. (Sundays are hard for him to wrap up and get out of church in time for a meal). And, now we're back home, watching golf and wishing for a Tiger comeback . . . not looking good for this tournament, though!!

Tomorrow we're off to the sleep center. We'll update with whatever we learn . . . it should be interesting.

Sumana was just asking about summer camp. UGHHH! If and when she goes, I really think she needs a special needs camp. I can't see her keeping up with 'fully-abled' 10 year olds for 3+ days. It looks like there are a lot of good camps out there, but it's pretty late to be looking in to them. There is one near Lake George that looks fantastic. I'm going to inquire tomorrow and see if they're booked up yet for the summer. We have good college friends that live within an hour of the camp . . . so it would be a nice trip to make! However, it may be something to look into for next year.

Saturday, June 20, 2009

Change of Plans

Well, our 'different pace' lasted just one week! I found out that the little girl who was in foster care with us for 2+ years is being adopted by her wonderful new family . . . the SAME day as Sumana's sleep study consult. After all the hemming and hawing about rescheduling or skipping the consult, it now conflicts with an event Sumana and I REALLY want to attend.

Well, I'm soooo thankful that there was a cancellation. Sumana will now have her consult THIS Monday. That frees us up to attend the adoption!!! We're soooo excited!

So, this week we have PT twice, a sleep study consult, college orientation for Gretchen, a picnic with our former foster daughter, a bridal shower AND a photo shoot with my sister's kids. Whew! It's a lot of running, but we should have fun, too! We try to make the most of whatever our weeks bring. God seems to give us the strength we need to make it through!

Thursday, June 18, 2009

Different Pace

Well, now that school is finished our week took a different turn. It was a good change of pace for me. I helped some friends with cleaning projects this week, so I've been out of the house a few mornings this week. I think the kids survived pretty well. Sumana has been on a TV ban all week to try to help correct some attitude issues. AND, she did dishes last night! I think she's getting the hang of it!!

Sumana has been reading a lot and playing lots of games by herself. She's had a really good week. Appointment-wise, she only has PT this week, so only 2 trips to Canandaigua! Next week is the same, too. I wish that this could continue indefinitely, but no such luck.

Tuesday, June 16, 2009

Sleep Study

Well, after a series of phone calls and e-mails we have a plan for Sumana's sleep study. While I thought it would be advantageous (timing-wise) to skip the consult and get right to the sleep study, it looks like the the consult is necessary. Dr. Maggie (Sumana's pulmonary doctor) is finishing her fellowship at the U of R and moving to Florida later this month. In order to ensure continuity of care, we decided it's better to actually meet with the doctor at the pediatric sleep center (who is also a pulmonary doctor!). I guess they can tailor the sleep study to Sumana's specific needs. For example, she doesn't normally snore, but she did set off the O2 monitor several times while she was in the PICU. So, I guess there is some way to address these issues. I'll have to let you know more after we meet with the doctor. Anyway, the consult appointment is July 1st and the sleep study is July 5th. Only a few weeks away!!

It's been awhile since I showed a picture of the VEPTR. Sumana's surgery for the implant is August 27th. The Vertical Expandable Prosthetic Titanium Ribs (VEPTR) will be attached to her 'extra ribs' and should help to straighten her scoliosis curve and eventually expand her chest cavity (thus, hopefully improve her lung function). It will be a full 6 recovery. Can you imagine getting used to metal rods just beneath your skin??? Ewwwww. It creeps me out! But, I guess I have to be Machiavellian and trust that the end result is worth it!

Well, since we were hoping to have Sumana's surgery in June, we didn't plan anything for the summer. Well, now we're enjoying coming up with some plans. Beach days at the lake are a MUST. I expect to get my WSI certification card any day now and hope to spend a good deal of time at LeTourneau Christian Center. I will be their 'waterfront director.' I think it's mostly an impressive-sounding title, but I hope to be at the lake a lot with the kids. Gretchen will be there working beginning next week. We also have several graduation parties, weddings and showers. Sumana is really looking forward to them all!

Sunday, June 14, 2009

Happy Gotcha Day!

Well, Sumana has been in the US 5 years! She requested brownies to share with her Sunday school class and idli (rice pancakes) for dinner. She is soooo proud to be in America. I hope she feels the same way tomorrow (or the next day), when Andrew is picking on her!

The 4 kids also had their pictures taken today. It was really all about Gretchen, though. She had her senior pictures taken. It's hard to believe that Greig and I will have two teens in college this Fall! Yikes!

Yesterday we spent the day with our friend Courtney. She had her graduation party at Ontario County Park. Sumana had fun meeting new people and trekking all over the park. The older kids played softball and I just talked and talked (what's new??!!)

Tomorrow I'm going to contact the pediatric sleep center and see if there is any way to skip the initial consult appointment and just schedule the sleep study. Sumana already has the recommendation of her pulmonary doctor. Because of the tight scheduling between now and Sumana's VEPTR surgery, I'm hoping we can get clearance. We'll keep you posted!

PLEASE NOTE: I changed some of the settings on this blog, so you should ALL be able to leave comments now. For more info on how to do this, scroll down to Wed., May 27th.

Friday, June 12, 2009

School's Out!!

Well, we made it! Today was our last day of Holman Homeschool. We're all pretty happy, but also sad because Shantell (our homeschool import!) decided to go back to public school. She's been with us for 2 years! She's become a part of our family. She'll be off to Marcus Whitman for 8th grade classes in the Fall.

Sumana is still getting stronger and stronger every day. Today in PT she was doing all kinds of balancing tricks in her tall kneel position and lots of sit ups. It's hard to believe her surgery was just a month ago! She also is back to helping with household chores. Tonight she's washing dishes ("but I'm not INTO dishes!"---not many people are!!) She also is getting good at putting her clothes away and picking up her books and toys. Yes, I know she's 10, but somehow we gave her a slow start in the chore department!

Sunday marks Sumana's GOTCHA DAY. She came to America 5 years ago . . . how time flies . . . and how far she's come! She's planning on idli and sambar and anything else Indian that she can convince her mom to make.

As far as appointments go, Sumana is scheduled for a Sleep Study consult on July 1st. They are already scheduling sleep studies into late August. I made it very clear that they need to get her in before her surgery. I'm rather disgusted that they have to do a consult first . . . maybe I'll call back and see if we can go ahead with the sleep study on the basis of her pulmonary doctor's recommendation.

Tuesday, June 9, 2009

Mom's back!

I'm back from an absolutely WONDERFUL weekend in New Orleans. I think I need to make a link or something for those of you who are interested in the my trip. We had beautiful 85+ degree weather with sunny skies! I have LOTS to share, so I'll let you know if/when I post about it.

Greig took over Sumana's scar manipulation (pressing and moving her skin around on her incision site). I guess exercises went by the wayside. However, she spent a lot of time with Greig at Crosswinds which meant lots and lots of walking! She really enjoyed her extra time with daddy!

Today we had our 1 month follow-up with Dr. Silberstein. He is very pleased with the results of the de-tethering surgery. The incision site is well healed; all that's left is a fine scar about 4 inches long. The Dr. said that re-occurrence of the tethering is very unlikely, as is any further spinal cord tethering. So, it sounds like this chapter in her story is finished!

Friday, June 5, 2009

Mom's Taking a Break!

Just a quick note to let you all know that I will not be updating Sumana's blog til Tuesday. I'm off for a fun birthday weekend with my friend Sue in New Orleans! (This is the adoptive mom of Sumana's buddy Arjun). We're going to check out the tourist attractions within walking distance of our hotel. We're in a good location, so I know we'll be busy! On Monday, my flight leaves later than the rest of our group, so I'm hoping to take in a city tour or swamp tour before I head to the airport.

Sumana will be in the care of her siblings and grandparents for most of Saturday and then dad will be in charge Sunday and Monday. I'm hopeful that maybe some of her exercises will get done and most of her medicine will be given while I'm gone. She know what she needs, and USUALLY will let everyone know, (unless it involves exercises!). I'm looking forward to a break from our crazy routine! I'll catch you all up on Tuesday!!

Thursday, June 4, 2009

Breathing and Sweating

Well, that's what Sumana did today. We left at 7am in order to be at Strong for a sweat test. Yep. You read that right. The short version is that a technician placed a collecting device on her arm, wrapped it up and then we bundled Sumana up in a sweatshirt and coat for one hour. The blue in the disk shows how much sweat was collected. Her sodium levels were above the normal range, so it will be repeated in August. I guess the sodium levels in her sweat can tell if she has cystic fibrosis. Hmmmm . . . interesting, huh? It's very rare for Indians to have this disease, though.

When she had finished the sweat test, she did some lung function tests. This involved breathing into some tubes that were connected to a computer program. This measured the air she takes in and breathes out. I was really hoping she would have improved (with the respiratory exercises she's been doing). However, she performed at about the same level as in March.
Next, we headed out for some clothes shopping for Sumana. Just after we entered the store, we heard a voice call, 'Hi!' It was my bloggin' cousin, Megan and her son, Brady. Even though they live near Batavia, they come to Rochester for PT. It was a wonderful surprise to see them!!

After shopping, we went to Tandoori for a wonderful Indian buffet. Sumana can really put away the food! After that we returned to the hospital and tried to find her hospital craft friend, Gracie. I guess it's good news that she had gone home. We'll keep checking for her at the hospital. She is also a patient of Dr. Sanders.
By then, it was time to see Dr. Maggie. It was a bittersweet appointment. Dr. Maggie is finishing her fellowship and moving to Florida this month. We decided to get Sumana set up with a 'cough assist' machine. It forces air into her lungs and makes her cough. The thinking is that if she can learn to use the machine, she will be better prepared for any respiratory complications after her VEPTR surgery. Her lungs will be stronger and if she needs help after surgery, she will already know how to use the machine. Hopefully, we can avoid any bouts of pneumonia after surgery (that is one of the major complications to this surgery).

We also are going to have her 'do' a sleep study. When she was in the PICU, (where they monitored her oxygen level around the clock), her oxygen levels dropped several times and set off the alarms. I guess that could be a warning sign. So, off for another test. I guess I'm glad to have these tests available to help find out if she has any issues that may present problems down the road. AND, some things may be better managed if we know about them NOW, rather than later.

Tuesday, June 2, 2009

Our Lucky, Unlucky Day!

Well, we got our hair cut. It took some doing, but it got done. Today's blog title is courtesy of Miss Shelly, our hairdresser (see picture with Sumana). Since I'm not big on 'luck,' I guess I'd say, "God worked it ALL out today." We left as planned for our haircuts, but as I was coming down my favorite dirt road shortcut, Sumana said, "Mom, you shouldn't drive on this road in the winter." I laughed and told her I'll drive it in most kinds of weather, because it's a shortcut! Well, a few seconds later we heard HORRIBLE sounds! I quickly realized that we had a flat tire. Darn!

AND, of course, it happened in Italy Valley, where there is NO cell phone coverage. God was working it out, though. There was a house right near where we stopped and a woman was home gardening. I was able to use her phone to call Miss Shelly and the auto club. AND, Miss Shelly was kind enough to come pick up Gretchen and Sumana and take them to her shop to get their haircuts as planned.

Meanwhile, I sat in the van and watched nature . . . for OVER 1 hour!!! (You all know how much I LOVE waiting . . . NOT!!) I saw squirrels and skinny chipmunks (unlike our obese ones that eat our bird food!!), listened to frogs AND saw a mamma turkey cross the road with her 6 chicks. I suppose I got a little work done toward a suntan on my right side, too. AND, the kind woman at the nearby house gave me some myrtle to plant at our house. How nice!

By the time I got going it was well past my appointment time, so I was sure I'd have to reschedule. BUT, 'No.' Shelly had just set a perm and was in the 'waiting' stage. She still had time to cut my hair! Yea!!! Now THAT was a blessing!

Well, I wouldn't let Gretchen drive home because I didn't like the sound the tire was making. I stopped several times to check it, but it seemed tight and I couldn't see anything wrong. However, as I got closer to home the noise got louder and louder and I had to go slower and slower. By the time we got home and I checked the spare, 3 of the 5 lug nuts were gone!! God really was 'working things out' for us. That could have been sooo bad! Thankfully, the towing company was great and came to our house and towed the van to the tire store. Whew! My nerves were SHOT by the time we got home! I am praising God that we made it home safely!

Monday, June 1, 2009

Awards and Stories

Sumana received several awards at the AWANA recognition service Sunday evening. She completed her 1st book in her T&T (Truth and Training) club. I was very pleased and quite surprised that she finished it. This is her first year in the club and it's much harder than the Sparky course. She has lots of LONG Bible verses to memorize and Bible study with questions to answer, plus various projects thrown in there for good measure. She did really well; Greig and I are so happy and proud!

She also receive special recognition for helping each week with the Sparky club. She would help get things ready before the club started each Monday. She's very proud that there are ways she can help and be more grown up.

Well, today Amelia Bedelia decided to run for Mayor. When Mr. Rogers said alot of voters were still sitting on the fence and asked if Amelia Bedelia knew what that meant, she said, "Yes. Sore bottoms!" Sumana just cracked up and laughed FOREVER!! It was soooo funny!

Tomorrow we're off to get our hair cut (all of them, actually!). Then, off to the pulmonologist on Thursday. Sumana will take a 'sweat test' to rule out cystic fibrosis. It's a scary diagnosis, but a very easy test. We'll let you know how it goes! She'll also be retested for lung function. I think she'll do much better this time because she's been doing breathing exercises since her surgery.

Can you believe Sumana had surgery just 3 weeks ago today?? She is almost back to normal (physically . . . the personality only faded for a day or two!). Post-op, she could barely stand alone for 1 minute. Today, she stood for 6 whole minutes! She also was able to start stretching again at PT. She's been BEGGING for stretching for at least a week! Today, she said it felt soooo good!