PT and OT

Well, after getting some school done, Sumana and I got our haircut. It was a rather momentous occasion. Miss Shelly said that today was the easiest haircut ever for her (with Sumana). Usually, she has to prop Sumana up, have me help tilt her head up or down, etc., etc. Pretty involved process. Anyway, Sumana now sits up so straight and tall that cutting her hair is not an issue. Yea!! Another bonus I didn't even think of! They better list that on the VEPTR website in the benefits of surgery column.

Then, we did our usual shopping errands and headed to PT AND OT. Sumana had already done her respiratory and PT exercises this morning (VERY grudgingly, I might add!). By the time she got thru with all of her upper body and leg exercises she was whooped! She really worked hard and Miss Kristen and Mr. Darryl seemed pretty pleased with her efforts. If we can just keep her motivated and work around her emerging 'attitude', she will be VERY strong and healthy, very soon!!!

Church and a painter's mask!

Well, Sumana made it to kids choir, sunday school and church today. But, she did in a painter's mask and lots of hand sanitizer. I noticed lots of people being rather paranoid about illness, too, so I didn't feel quite so crazy! Lots of people were avoiding hugs and grabbing the hand sanitizer after shaking hands. Hopefully, lots of people will stay healthier this fall by taking some precautions.

Anyway, Sumana really had a good morning and then ate another HUGE lunch and dinner. (Still sounds like good news to me!!!) One item of prayer tonight, though. We have a pre-teen with us tonight. She actually was placed with us in cooperation with the Sheriff's office. I think it's a long story, but I didn't ask. Our job is to give her a safe place for the night. She's settled down alot already. Hopefully it'll be a quiet night. (please pray to that end!)

What an eater!

Well, I did forget my camera Friday night. Too bad! Our Sumana can really put away the food. It would have made a great picture to show all she ate! She ordered a cheese quesadilla and ate the WHOLE thing! Then, she proceeded to pick away at her mom and dad's fish fry! She probably ate a third, maybe a half of our huge battered fish. THEN, we had an apple cobbler at our friends' house and she ate a HUGE bowl of that!

Now just in case you're thinking it was a one-time deal . . . NO! She has been eating like that all day today! I hope this means she's getting on the healthier side of things! I only gave her one albuterol/cough assist treatment today (only 2 yesterday!). She really seems to be doing well.

She is very anxious to get to Kids choir and church tomorrow (she missed last week because she was sick). I keep hearing about all these colds and viruses that are going around and I can't help but be nervous about her being around germs. Here's how paranoid I am: I called my friend who's a nurse and asked if she had any face masks that Sumana could wear. (She's not sure if she has the medical kind, but her husband thinks he has the painter kind!!)

I hate to make her wear one, but we can't afford to have her get sick. Greig's youngest nephew gets married next weekend in Pennsylvania and she CAN'T get sick!! I know I should have faith that God will protect her from 'whatever' is out there, but I also want to be smart about helping her stay healthy. She has been sooooo good with using a liquid hand sanitizer. I even got her her own bottle that she carries around with her! I just plain freaked out by how a simple cold with Sumana becomes pneumonia within 24 hours. UGH!! I guess besides praying for our whole family's health, you can pray that Sumana will survive her crazy mom's antics!!!

Forgot my camera!

Oh, man! We went apple picking this afternoon and I forgot my camera!!! UGH!!!! It was soooo beautiful. I guess you'll just have to imagine Sumana under an apple tree picking apple after apple and placing it in her bucket. It was quite a sight. And, the apples were so plentiful it didn't take long for us to pick 50 pounds! Apple pies and apple cobblers here we come!!

Sumana still seems pretty healthy. She had more symptoms at bedtime last night, but she's seemed good so far today. She also got a whole day of school in. We actually have two whole weeks of school done! It's great to be able to 'double up' when we get behind. If we can get in some more good days, we should be able to get back on track with our initial school plan. Hip, hip, hooray!!!

Tonight, all three of our older kids have plans. This means Sumana gets to go out for fish fry with Mom and Dad and their friends. This should be interesting! Maybe I'll remember the camera this time!! LOL!

Really good day!

What a good day Sumana had (particularly, breathing-wise). She didn't get up for a 5:30 am breathing treatment AND she didn't even have coughing fits when she did wake up. Greig and I decided to cancel her doctor's appointment, but continue the albuterol and cough-assist today. We did that this morning, but then she didn't need anything else ALL day. (No Motrin til lunchtime! She went from bedtime til noon on one dose!) We'll do the breathing treatments tonight and probably twice again tomorrow.

So, we actually stayed home ALL day! I even took my long awaited nap! Tomorrow Sumana has PT in the afternoon, then hopefully we'll be home again on Friday. I could really get into staying home again!!! Yeeeeee-hawwww!

Two trips to Canandaigua

Well, Sumana woke up today just like most other days lately: coughing, trouble breathing, low grade fever . . . . So, we went in to see her primary doctor this morning in Canandaigua. She didn't cough at all on the way out or in the office. Surprise, surprise her lungs were clear. Thankfully, the doctor listened to me stress about how rough the last few days have been. He suggested it was time to give her a course of steroids to help her get over this once and for all.

The whole day was much easier for both of us. Except, of course, the fact that I had already planned to be in Canandaigua this afternoon. She did pretty well in physical therapy and even did some modified sit ups (first ones since the surgery!). Then, she got to meet Mr. Darryl for her occupational therapy evaluation. It was pretty clear that she's got some post-op issues to work through. Some of her goals are to be able to put on shirts independently, drink from a cup and raise her hands above her head without pain. Pretty reasonable, huh?? In addition to these post-op goals for her right side, she will also learn some exercises that should help strengthen her left side (which is affected by her spina bifida).

So, that means PT and OT on Tuesdays, PT on Thursdays. She also will probably be going back to her primary doctor tomorrow to make sure she's finally on the road to recovery. Whew! I'm ready for a nap!!! LOL!

Post-op update

Well, there you have it. The top picture is from today, showing a curve of approximately 32 degrees. The curve on her early August x-ray (bottom) showed around 52 degrees. (Today, though, Dr. Sanders measured close to 70 degrees on one of the curves . . . I guess it depends which curve you're comparing) At any rate, there has been GREAT correction and excellent chest cavity expansion. Dr. Sanders is VERY pleased with the results. We're VERY pleased with his expertise and gifts that he used to help our girl.

The official word is that Sumana grew 3.5 cm. (I thought it would be closer to 2-3 inches!) She goes back for another check up in a month. The next expansion is planned for February. As far as I know, it is an outpatient procedure where they make a small incision and crank up the rods. Also, Sumana asked if she was the oldest patient to receive a VEPTR implant and she found out 'close, but no cigar'. She is the most physically mature patient Dr. Sanders has ever worked on, but there is an 11 year old boy out there that takes the 'oldest' prize.

The not so good news is that Sumana had a really rough day with her lungs. It started before 6 am with coughing and trouble breathing (albuterol nebulizer to the rescue). Thankfully, she got back to sleep and slept til almost 10! Then she had more albuterol and chest PT and we headed out for her regular PT with Miss Kristen. After that we headed to Dr. Sanders (more albuterol inhaler on the way). By the time we were on the road home (3pm) she needed MORE albuterol. When we got home at 5 she was in really bad shape (back to the nebulizer and chest PT).

She was so bad at dinnertime that she couldn't eat or breathe easily. That meant no AWANA. She was sooo upset and crying that her breathing was worse than ever. UGHHH! Poor girl! We barely made it to an 8 pm nebulizer treatment and more chest PT. What a day! I'm sooooo tired of all these treatments, and I'm not on the receiving end!

Bottom line, unless she's much better in the morning, we're off to her primary doctor tomorrow. There really isn't much more we can do to help her. I guess we could start up the middle of the night treatments again, but that's soooo hard on all of us. She also has a PT make-up tomorrow and an occupational therapy evaluation. Unless she's in the hospital, I'm going to do my best to get her to her therapies. She seems weaker than she did right after leaving the hospital. It's a vicious cycle from needing exercise to get stronger body and lungs, but being too sick and weak to do them. UGHHHH!!! So, again, please pray for wisdom for us all in the morning and healing for Sumana's lungs.