Friday, April 30, 2010

TWO summer surgeries!

It's looking like a July surgery for Sumana and NOW Gretchen in August! My poor big girl has had a lot of ankle trouble over the last year or two. We finally saw an ankle specialist and after 6 weeks of hemming and hawing, she will need ankle surgery. She has a congenital defect in her heels that make her 'the leaning tower of Pisa' and I guess the injury to it compounded the problem.

The doctor is going to break Gretchen's heel bone and take out a piece; hoping to straighten her up. Then she's going to lengthen her Achilles tendon and suck out all the accumulated scar tissue. Nice, huh?? Because of Gretchen's busy summer (graduation party, summer school and working at camp), we're opting for a mid-August surgery. By then, Sumana should be in better shape, too.

The bugaboo at this point is scheduling. Dr. Sanders is already booking up for the summer and his secretary is out til mid week. Dr. Baumhauer only does surgery 1-2 days a week and hasn't finalized her August surgery schedule yet. Lots of hoops to jump before the BIG days.

While Gretchen and I were waiting to see her doctor, a woman in the area was LOUDLY complaining about how she had driven 1 1/2 hours to see the doctor and how things were not going as she planned. I must honestly say that I was quite irritated with her attitude. True, we only drove an hour, but I am soooo thankful that we have such wonderful surgeons/specialists within an hour or hour and a half that we can see. I remember all of our 5+ hour trips to Philadelphia to Shriner's because we felt the need for a continuing second opinion.

I'm so glad those days are gone. We have some of the best doctors in the country right in our backyard! What a HUGE blessing. Though I had to drive to Rochester on Wednesday afternoon with Sumana and then Thursday morning for Gretchen, it really didn't bother me at all. I am just plain thankful we have that option.

Wednesday, April 28, 2010

Migration in Spring

We expect and even look forward to the birds migrating back to our yards in Spring. However, migration in a VEPTR rod is definitely not something we want to EVER deal with, no matter the season! Sumana and I just got back from seeing Dr. Sanders (he squeezed us in at the VERY END of his day!) It was obvious to him that the rod closest to Sumana's spine has migrated UP into her upper ribs. On the x-ray it appears to be at least a 1/2 inch change from February's films (maybe more . . . that's MY guess-timate).

So, believe it or not, Dr. Sanders wants to wait a month and see if the area heals and if Sumana can cope with the pain. In the meantime, he wants to schedule surgery for July. If she has too many problems between now and a month, he will do her surgery earlier. As always, the skin on her back incision sites is a real concern. Up until 3 weeks ago, one area was still 'oozing'. Her skin is really struggling to heal with the close succession of surgeries. The longer we can wait the healthier her skin can get.

The real bummer in all of this, though, is that the offending rod is actually the one Dr. Sanders said didn't need replacing yet. There is plenty of room for expansion: maybe 2-3 inches. Because of this rod trouble, she'll need the ENTIRE, full-blown surgery AGAIN-- Both rods needing to be worked on, or replaced. There is so much room left on the rod on the spine-side, I doubt Dr. Sanders will even consider replacing it. You can bet I'll ask, though!

Sumana and I made the best of our late-day appointment. We had a late lunch at our new favorite: Mysore Woodlands. They do REAL South India food. Check out the size of the Masala Dosa in the picture! (That's by far my favorite dish. It is cooked potatoes and spices that are rolled inside a paper-thin crepe-sort-of-thing!) We also 'hit' Lands End Inlet and the mall for a little sale hunting. We were very successful!!

Other good news: Sumana saw a different orthodontist last week and was told she has BEAUTIFUL teeth (that's kinda what I thought!) He said in an 'ideal world' there is work that could be done, but nothing critical or even really necessary. Yeeeee-hawwww! One less thing to deal with!!!! I couldn't be happier (Sumana, too!!!)

Sunday, April 25, 2010

Happy Girl

Sumana has been so much happier this week. I hadn't realized how the stress had been affecting her. After watching 'the little boy' this week, she commented how much she loves taking care of babies . . . 'They're so much fun.' Then she commented about how our last foster care experience was NOT fun!

Thanks to those of you who prayed for the single mom we're trying to help. It sounds like things are not as bad as she first thought. I also re-read my last point and realized that it sounded like I was probably talking about racial prejudice, but I'm actually becoming much more aware of prejudice toward people with mental illness. The girl that was living with us definitely is dealing with some sort of mental issue and so is the mom who is currently in crisis.

Since I have struggled with depression for years, I guess I can understand the overwhelming feelings that overtake some people . . . how they can feel so alone and hopeless. When the mom came to pick up her son, she was a new woman. Just a break to 'get her head together' and to do some things for HERSELF really seemed to energize her. How ironic that I, too, was energized by watching her little boy. It's indescribable, really. My own kids used to wear me out, but now if I help a family in need by watching a young child I'm energized. It's pretty cool when you know you're doing what God wants you to be doing!

Back on the subject of Sumana, she has been having a lot of pain this weekend. I had planned on calling her doctor today, but we seem to have found a balance of pain meds that's working, so I guess I'll wait til tomorrow. She is scheduled to see her doctor on Wednesday, but because she's having more and more pain I at least want to touch bases with him. I'm concerned that the VEPTR has moved or become loose . . . something's going on. I'll let you know more when I do!

Tuesday, April 20, 2010

Wii Fun . . . FINALLY!!!

We have been busy doing things that are special for our family since our foster daughter was removed last week. It feels like we're celebrating in one way, but there sure is an ache in my heart that reminds me that it's not ALL happy. I still haven't made contact with K yet, if I don't hear by tomorrow, I'll be more assertive about getting a phone number.

Friday we got take out Chinese for dinner (that's a once a year type of event). Saturday and Sunday we just hung around the house and I got caught up on paperwork and SLEEP! Monday we all went out to Applebee's for dinner. (That's NEVER happened before!) And, today . . . I got Andrew to set up the Wii! It's a beautiful day outside, but Andrew, Sumana and I decided to hang out and play!

Sumana was soooo surprised! She actually showed me and Andrew how to play some of the games. We all tested our BMI and set goals . . . this system is soooo cool!!! Sumana's favorite game is actually a RUNNING game! Andrew is pretty cute doing a hula hoop type game (don't tell him I told you!!!)

Another family is in crisis and our 'number' is up again (already!) I think we would have helped this family even if K were still here. We'll have a 15 month old for a couple of days this week. It's another sad story . . . people can be so prejudice against others that aren't like 'us'. I just want to break into song . . . 'can't we all just get along'?????!!!! Please pray for this single mom who's in a tough situation. She needs wisdom and some good legal advice.

We're also busy starting to plan a belated graduation party for Gretchen. We (I) decided last minute to graduate her early last year and promised we could give her a real party this year. Mark your calendars: Sunday, May 23 at LeTourneau Christian camp. It's going to be a BIG party . . . Gretchen invited EVERYONE on Facebook. (Hopefully we get a better RSVP this time than at her birthday party!!!)

Friday, April 16, 2010

Change is here

Our foster daughter was moved today to a therapeutic foster home that's over an hour south of us. It'll make it next to impossible to visit her; however this placement is only temporary while she waits for the diagnostic center to open up. I don't have any details . . . the social workers came to the house to pick up her stuff and then got her right from school. 'They' thought it would be better if they handled it and we did not get involved. That was hard, but hopefully we can connect soon.

Thanks for your prayers during this difficult time. Maybe I can get back to blogging about Sumana now!!!

Off to Dr. Sanders again!

Well, I knew it was too good to be true . . . no Rochester appointments til June??? Sumana's PT, Miss Kristen, and I took a good look at Sumana's back yesterday and did NOT like what we saw! I knew she seemed to be 'leaning' already, but her whole posture seems 'off'. Her right hip just about TOUCHES her right shoulder blade and the incision over her spine is diagonal (it used to be vertical).

Needless to say, I got on the phone IMMEDIATELY to get a message to Dr. Sanders. He does want to see her soon. Though he'll be on vacation next week, we'll get in to see him the week after. I guess it's a good thing to see him soon. His secretary said his surgery schedule for summer is already packed! Yikes!!

Our 'situation' with our foster daughter continues to be a major stress factor. Her case workers are having a hard time finding a place to send her. There is a 3-6 month wait for the diagnostic center they were hoping to get her into and they're already looking in Rochester for a temporary group home that will take her while she waits for a spot to open up. I hate to see her moved that far, but she's proven that she needs a higher level of care than is available in our region. Please keep that situation in prayer. We really need to have her moved . . . and SOON!

Monday, April 12, 2010

Cool Song 'Experience'

We talked in Sunday School yesterday about those special times where you know God is talking to you. Well, have I got a cool story to share today! As you know, we are extremely stressed at our house with the addition of our 15 year old foster daughter. I thought I had 'licked' the nail-biting habit, but it's back with a vengeance. I've never felt more trapped in my own house. I often feel like I want to crawl out of my skin.

With that as a backdrop, I'm driving to work today listening to music on two different Christian radio stations. I have no patience for talk or commercials, so I'm constantly flipping between the stations. Also, there are certain places on my trip where I only have reception for one station. I was listening to the song 'Love the Lord thy God' (It's Matthew 22:37 set to music). 'Love the Lord thy God with all your heart, with all you soul, with all your mind, with all your strength'. I started to lose the one station so I switched over to the other one and I heard the same song, so I switched back and it was REALLY the same song, just a little re-wound on the 2nd station. I guess God wanted me to get a GOOD listen to the song. I almost cried, it was just a reminder of priorities in the midst of our struggles. How cool is that??!!!

Meanwhile, Sumana is surviving with a stressed-out mom, but a lot is falling through the cracks. She really is not exercising like she needs to and we still have the Wii in the box! She is dying for Indian food, so we may have to make a trip to Rochester next week. We're not 'scheduled' to go to Rochester til mid-June, so that's a ways away. We didn't have time last week between appointments, so a special trip might be warranted! Also, we STILL haven't caught up with our friends Giana and Dana. We'll keep you posted on Sumana's plans!

Saturday, April 3, 2010

Update . . . FINALLY!

When it's quiet on this end, it usually means we're 'crazy busy'. However, this time it's quiet because there's been so much stress I haven't been able to keep up with my usual routine. Since it involves our foster daughter I won't go in to too much detail, but she has been at the center of the stress.

I really wanted to something together as a family for Easter, but with Greig's schedule and area church's schedules, nothing seemed to fit. However, Greig's friend Vaughn called him and invited us to his church in Painted Post. It was a powerful presentation about 'The weekend that changed the world". We ALL went (all 7 of us). It 'would' have been just what I had hoped for, but our new addition made the 1+hour trip down and back just miserable! Of course there has the been the issue with how she treats Andrew and Sumana, but this helped push things to the breaking point.

Even though she was warned almost 2 weeks ago that we were her last chance, she seemed to not care. Now, the bottom line is that she will be moved to a diagnostic residential center. I hate to see it come to that, but maybe if she can get a higher level of care, she can return to us down the road. Please pray for Kathleen. Though we've told her what was coming, she doesn't believe it'll really happen. AND, to make matters worse, she has been a delight the last 2+ days. It's hard to know if she's ready to make a change or if she's just trying to get out of the inevitable.

Meanwhile, Sumana had her annual check up on Thursday. This is the BIG one that involves an ultrasound of her bladder and kidneys and then a 3 hour appointment where she sees upwards of 4-5 practitioners/doctors. Her kidneys have grown again (yea!) and her bladder continues to function well. Both of these areas are usually major concerns for kids with spina bifida. Also, I guess her VEPTR surgery could have negatively affected the function of these organs. (That was one thing I hadn't been warned about!) However, she was not affected at all. Praise God!

The nurse practitioner that has seen her every year for 5 years noticed a HUGE improvement in her appearance/posture and her use of language. She answered all her questions directly and even asked her questions. I also commented that her attention to schoolwork has improved a lot this year. We still need to work on her handwriting. I have the materials, it just takes time and regular practice. She's doing so well in other subjects, I guess it's time to focus on that now.

We also went shopping after the appointments and got Sumana all set for summer clothes! I had never been to the Lands End Inlet before, but what a pleasant surprise! I love their stuff anyway, but when we went to the check out EVERYTHING was half off! I guess there was a special kids sale, but I was happy with the price BEFORE the discount. If we had more time I would have gone back and looked for MORE!!!

We are looking forward to celebrating Easter at Crosswinds tonight and tomorrow at Middlesex Baptist. This is BY FAR my favorite holiday of the year. It has such depth of meaning to me. Jesus is not dead, HE IS RISEN! With all of the stress of the past weeks I am continually reminded that because of His resurrection, He proved He is God and He can do ANYTHING!