Friday, May 29, 2009
Thursday, May 28, 2009
Wednesday, May 27, 2009
I'm sorry I didn't post anything yesterday. I was soooo bummed about not having a date yet that I couldn't bring myself to say it AGAIN. It has been so hard to look toward the future, not knowing what I can and cannot plan. (And this is a planned surgery . . . what about those families with chronic health concerns and tragic accidents??) At least now we can make some summer plans and we can be fairly confident that she will be well healed in time for Greig's nephew's wedding in October.
My cousin, Megan, (the blog extraordinaire), reminded me a while ago that it's easy to wish away the present as we look toward the future. It's been so easy to fall into that. Now, I almost want to forget about the VEPTR date so we can fully enjoy the next few months.
Gretchen flew home with no incident today and Sumana was sooooo happy. It's funny how much she missed her 'sissy' (oh, brother!!) They're playing hide-and-seek right now. Gretchen's such a good big sister!
Well, Sumana has been off albuterol for 24 hours now. Yea!! And no coughs!!! Hopefully, this post-op chapter is past us and we'll be on to healthier days. Sumana has PT with Miss Kristen tomorrow and Friday (to make up for the holiday). Her strength is really coming back! Praise God for 'quick' recoveries.
Monday, May 25, 2009
1. Under this post you will see small writing. On the right side you will see "# comments" for example "5 comments." Click on that.
2. A new screen will open with the post and then comments already written underneath. Scroll down.
3. You can type a comment in the white box. Write you name in the white box after your comment.
4. In the small white box under the comment box it will say "select profile." The easiest way to do this is to scroll down and choose "anonymous." If you remember to write you name in the comment box I'll know who you are.
5. Then just click Publish Comment and your comment will be posted.
So, you don't have to register to leave comments. If you have any questions about Sumana and her treatments/surgeries, please ask in the comment section. I'll be happy to share answers to your questions in a future blog. Remember I also copy this blog to caringbridge.org (the name of the site to visit is just 'sumana'. You can leave comments there, too, in the guestbook section.
Saturday, May 23, 2009
So, in light of this major change, Sumana is planning on participating in the Memorial Day parade. Her AWANA group always has a float. I thought that she might like to WATCH the parade (she's never seen one!). But, no, she wants to be IN it again.
As soon as we got home she was out at her sandbox. That has got to be her favorite outdoor spot. It is a table with half sand, half water. She spent more than 2 hours out there!
We still did not hear back from Dr. Sander's office . . . ugh! So, of course, with the holiday on Monday, we won't hear anything til Tuesday (let's not hold our breath!)
I told you about the 'needle' episode in the lab several weeks ago. Remember the lab tech asked her favorite song and Sumana said 'Jesus Loves Me'. Well, she has been singing her second favorite song alot today. Here are the words to 'Mighty to Save':
Everyone needs compassion
Love that’s never failing
Let mercy fall on me
Everyone needs forgiveness
The kindness of a Saviour
The hope of nations
Saviour, He can move the mountains
For my God is mighty to save
He is mighty to save
Forever, Author of salvation
He rose and conquered the grave
Jesus conquered the grave
So take me as You find me
All my fears and failures
Fill my life again
I give my life to follow
Everything I believe in
Now I surrender
Shine Your light and
Let the whole world see
For the glory of the risen King
Since Jesus conquered the grave we know He can move any mountain in our way. That's where FAITH comes in . . . again. What an awesome, recurring theme in our journey with Sumana.
Thursday, May 21, 2009
Andrew had a blast taking pictures; in just a short time he took almost 70 pictures.
Sumana continues to need her nebulizer every 6 hours or so. I keep hoping she'll stop coughing, but it hasn't happened yet. Even though her stitches were removed today, I guess there are lots of the dissolvable (sp!) ones underneath, so she still has quite a few restrictions for 2 more weeks.
I STILL didn't get anywhere with a VEPTR surgery date today. Waiting is not getting any easier for me!!
Wednesday, May 20, 2009
She also is doing well on plain old Tylenol. She can make it 6 hours on a dose. This has really taken me by surprise! All of a sudden she's living most of her day at a '0' for pain. Yea!! Please continue to pray for health with her lungs, healing for her back and strength to return to her legs.
We are still waiting for a VEPTR surgery date. July 2nd will NOT work, so it's back to the drawing board. The other surgeon that needs to be in on the procedure has a schedule that's almost the complete opposite of Dr. Sander's. Please pray that they can find a workable date and get it on the books. I'm still more willing to wait than I was at first, but I know summer flies and it would be nice to be able to make plans. Maybe we'll hear something tomorrow. I will still call the secretary a couple times to check in. I'm sure I'm driving her crazy, but (what's the saying?) "the squeaky wheel gets the oil!"
Tuesday, May 19, 2009
Well, today Sumana wanted to try just bubble gum medicine (regular Tylenol). After walking around Aldi's with her crutches her pain was at a 9, but when we were at the doctor's (checking her lungs, again), her pain was at 0! Woo-hoo! Maybe we can make the bubble gum work for us!!! She hates the Tylenol with codeine.
Here's a picture of Sumana registering her new Webkinz friend. It's an eagle she named Igor (!). It was a gift to remind her that some day soon she will soar like an eagle. She loves her new friend (who has the same birthday as Daddy!!)
Sumana was coughing really bad even after her nebulizer this am. So, I called the doctor and, of course, couldn't get an appointment til mid afternoon. By the time we got to the doctor the coughing had stopped and her lungs were clear. I felt rather foolish taking a perfectly healthy girl to the doctor's, but I'd rather be on the safe side. Keep those prayers coming for her health!
I'm hoping to hear from Dr. Sanders' office today about some possible surgery dates. I guess he was going to try to work around the other surgeon's schedule to get her in sooner. I just wrote that I was happy to wait a couple weeks . . . . I guess we'll have to see how it all pans out.
Monday, May 18, 2009
We did make it to church yesterday. Sumana was soooo happy to see everyone again and I think she surprised quite a few with her presence. She went to kids choir, Sunday School, the first part of church and then helped Miss Natasha with children's church. What a busy morning!
Saturday, May 16, 2009
Speaking of tomorrow, Sumana is going to be in the care of her dad and brothers tomorrow. Hopefully they'll be tough on her, too. Deep breathing and exercise seems to keep her cough loose. Gretchen and I are traveling to McClure, PA for her Mexico missions trip meeting. The missionaries they work with will be at the meeting. I'm looking forward to getting some firsthand info about the swine flu and border violence 'down there'.
Since we'll get back late tomorrow night, I'll give you an overview of Sumana's week ahead. Grampy and Grammy arrive for a week's stay tomorrow. Monday she returns to PT. Thursday she gets her 14 stitches removed. Hopefully, we'll get a good week of school in, too. We have less than 3 weeks left. Yea!!
Today, Sumana's attitude is very good. She's very happy. The bummer is that when she's sitting quietly there's no coughing. (I originally thought that was good). However, when she went up to get dressed, did her PT exercises and breathing exercises the nasty coughing was back. The poor kid is in trouble today. Mom is going to be 'on' her all day about coughing. With her history of pneumonia I know 'it's' out there just waiting to flare up. As long as she's coughing I think that means 'it's' not settling in her lungs. So, let the battle begin!
Please pray for Sumana's appetite as well as healing. She hasn't eaten much of anything since Wednesday. If it doesn't improve by Monday, I'll call her neurosurgeon and/or pediatrician.
We're looking forward to going to church tomorrow. Sumana is planning on it ('unless she's coughing'). However, I at least want her to try going to choir to see if we can 'make' her cough!! (Sumana has such a sadistic mom, huh??!!)
Friday, May 15, 2009
The doctor did hear some rattling in her chest and because she was so close to discharge from the hospital, he sent her for an x-ray. Thankfully, it showed NO pneumonia, just her usual 'not-fully-inflated' lungs. We're just going to monitor her for increased coughing or fever. My personal opinion is that as long as we keep her lungs WORKING, she should be okay. No more laying around!!! We found out that she is still strong enough to use her crutches, so we're going to encourage her to switch from her old walker back to the crutches.
By the way, we all slept very well last night. It felt soooo good to sleep and sleep. I'm anxious to get another good night's sleep and try to get caught up on 'life' tomorrow.
Thursday, May 14, 2009
Wednesday was such a busy day for Sumana. It was THE DAY to start walking. It took til 1:00 pm to get her into a sitting position. In the meantime, they had disconnected her IV tubing and taken out the catheter. The bummer was that she had to go to the bathroom soon after just sitting up. By the time she got to the toilet and figured out how to sit down, she didn't have strength to get up! She was nearly hysterical. (I need to work on my compassion, because I really could hardly stifle my laughter. It was soooo funny, especially when she dug her heels in and said she was not moving!!!) Thankfully, she figured out a plan and made it out of the bathroom. Each subsequent trip got easier and easier.
The BIG deal was in the afternoon AFTER the toilet incident. Four therapy dogs visited her unit. We met up with all 4 of the in the play room. She was in a wheelchair (hadn't taken any steps that didn't involve the bathroom). So, I had the dogs at one side of the room and Sumana had to get up and walk to them in order to pet them. She did it twice!!!
Last night was horrible, though! At 8:00 pm we were told that a sick 2 year old girl would be moving into our room because she needed to be close to the nurses' station. We were given the option to move and after hearing the nice LOUD white noise that came with her, I declined to move. The noise was much preferable to the 2 month old baby crying all night in the room next door. So, Sumana and I promptly went to sleep-- only to be awakened at 10 and TOLD we had to move. We only had 10-15 minutes to wake up and gather all of our stuff and move in with a 2 month old baby (thankfully a DIFFERENT, quieter one!). All in all (and thanks to some awesome earplugs!) we got some pretty good sleep last night.
Today, Sumana walked with a walker from our unit, across the hall to the other children's unit. She met a 4 year old girl who had gotten a 'halo' on Monday (courtesy Sumana's Dr. Sanders!). Her mom and I left the girls to their wind sock project and went down the hall for some coffee and snacks (courtesy Ronald McDonald House!). It was so encouraging to hear Becky sing the praises of Dr. Sanders. They have been 'with' Dr. Sanders for 3 years; moving from Erie appointments to Rochester appts.
I guess that's one thing that I was surprised about: the number of kids with cancer or serious, long term respiratory issues AND the wide range of places these kids have traveled from. Pennsylvania, Ohio, Buffalo, Syracuse, Jamestown, etc!
I wish I wasn't so tired. I'd love to share stories about the 10 year old girl with neuroblastoma, the Mennonite woman who has been at the hospital since January with her young child, the multi-racial couple that hasn't made it home YET after the birth of their baby 5 months ago. Everyone we met had the same determined passion to advocate for their kids.
When we got home I found my frig and freezer full of food! Unbelievable! We are so grateful for the outpouring of gifts for Sumana and food for the whole family. Your prayers and acts of kindness are so precious to us. Once again, you're putting your faith in action. Thank you!
Wednesday, May 13, 2009
As of 10 am Wednesday, Sumana is working at sitting up. By noontime, they hope to remove her catheter and start her walking. She is signed up to walk the therapy dog this afternoon. How cool is that?
Greig has been a good sport doing the blog this week. I am trying my hand at typing on a wireless keyboard and squinting at the TV/computer screen. I can't figure out how to do spell check and edit, so sorry for all the typos!
A Child Life specialist just stopped in and is going to bring a craft to do with Sumana. They are going to make dolls out of egg cartons and other stuff. I'm going to take off to pick up some lunch while she works!
Yesteday, Sumana had a lot of visitors. It was a HUGE help in getting her thru her 48 hours of lying flat. Today should be busy with sitting up and walking, so it'll go much faster. FYI: The phone number here is 585 275 7575 ext. 157 33. We'll be here at least til tomorrow. Sumana is making great progress, but needs to try a lot of 'new' things before we can leave.
Tuesday, May 12, 2009
Today at 10:30 a.m. she is more talkative and more herself. She is laying on her side for the first time and is resting pretty good. She is charming all the nurses with her outgoing personality.
The concerns that you can be praying for are: That the 'dura' (the outer covering of the spinal cord) closes completely. Leaking of the spinal fluid is bad. The other thing is she has developed a little crackling in her chest (fluid in the lungs) so she is getting nebulizer treatments. And... that she would be able to take in nourishment. Dr. Silverstien was in this morning and said he will get her UP tomorrow morning and the possibility of going home either Wed. afternoon or evening or Thurs. a.m.
FYI: They are planning on moving her to another room soon so give Cheryl a call to see where she ends up before you come to visit. Thanks.
Monday, May 11, 2009
Everything went smoothly today. The nurses were waiting for Sumana and took her right in. Dr. Silverstein's assistant attached 4 electrodes to her head. (see picture) That was to monitor her nerves so they could keep watch of what they were doing during the surgery. The Anesthesiologist was very informative and very friendly and answered all of our questions. The resident anesthesiologist is from Kerala, India (southern India just like Sumana - see picture).
Melody Burri and Deb Curtis came and spent the afternoon with us and we all prayed just before she went in. That was a real encouragement and Sumana kept up her high spirits. But nothing made her day more than when she got the 'mask' for the anesthesia so that she didn't have to have a needle. The resident scented the mask with strawberry chapstick so that it was a pleasant smell.
They took her in a little early, 1:15 and the doctor came back to the waiting room at 3:15. So it went pretty fast compared to what we were originally thinking. Dr. S. was pleased with the outcome. His only slight concern was a small nerve that went to her rectum had to be cut but there were many other nerves that were going to the same place that he didn't have to touch.
She woke up pretty quick and has been in a little bit of discomfort but over all pretty well. She has to be in a horizontal position (back, sides) until Wed a.m. Mom will be staying overnight at the hospital while everyone else tries to manage at home.
She is in Rm 9 in the PICU. 4th floor in the 2800 wing. (Red Elevator) Only registered visitors can enter so please call if you plan to come. (585-729-5849) No flowers or food in room. Balloons are ok but have to be attached to the outside of the glass doors of her room.
Thanks for all your prayers, posts, calls and visits. We are blessed with two supportive church families. It feels like God is using all of you to help us feel Him carrying us thru this tough time. Does that make sense? We're assured of His presence throughout the Bible, but the body of Christ really puts hands and feet to His word.
Well, I asked Greig to take his laptop to the hospital. I don't really 'do' laptops, so hopefully he'll do an update for me later.
Sunday, May 10, 2009
Sumana is pretty nervous about the surgery, she thinks it's going to make her left-side weakness better. I tried to explain that since she hasn't experienced any symptoms, she probably won't see any changes, except a sore back. I reminded her this surgery gets her one step closer to the VEPTR surgery, which WILL help her. She's also mad about her brothers and sister being able to eat breakfast. She's already making plans so she doesn't have to watch them!
We've been blessed with lots of good wishes and promises of prayer for Sumana. Thank you. It really encourages us. We know that Jesus is the Great Physician and HE will work mightily through Dr. Silberstein tomorrow.
Wednesday, May 6, 2009
Sumana has been 'bumped' to the number one spot for surgery on Monday. Yee-haw! To top it off, because the Ronald McDonald house is full, they're going to put Greig, Sumana and I up at the RIT hotel and conference center. They even give a $20 voucher to use for food at the hospital. Wow! What a blessing! (Especially since we have to be AT the hospital at 6 am!) The surgery will take approximately 3 hours. Then she recovers in the PICU til Wednesday and then hopefully goes home.
I've had some people say they've have troubles accessing this blog, so I will be copying my entries to a caring bridge site: http://www.caringbridge.org/visit/sumana Feel free to pass this along to those who 'don't do' blogs!
In closing, a friend and I will be gone at a homeschool convention for a few days in Harrisburg. So, I don't plan to blog til Saturday or Sunday. Please pray for Sumana's continued good health right up to the surgery. She wants you all to know that she is a little worried about the whole surgery. So I guess, pray for peace for our little peanut, as well. Thank you!
Tuesday, May 5, 2009
However, the surprise was in her lower back: the lumbar region. There were signs of tethering of the spinal cord. This basically means that it is 'hung up' on something, not free floating like it should be. Dr. Silberstein and Dr. Sanders had already consulted each other about these findings. Since it is in a completely different area than where the VEPTR will be placed, the surgeries cannot be combined. Dr. Sanders asked that the tethered cord be repaired and then we can schedule the VEPTR surgery 6 weeks from that date. Thankfully, she can have the repair surgery done on Monday, the 11th, so we're looking at the week of June 22 for the VEPTR. That's much later than I had hoped, but I am very thankful that the tethered cord was found NOW and not in the typical fashion. Usually, the person with spina bifida will have pain, or loss of feeling or bladder control first, THEN the tethered cord is found. It's quite a blessing to have this discovered BEFORE Sumana encountered any problems.
Remember what I told you about Sumana's feeling toward needles?? After her appointment with Dr. Silberstein, she had her pre-op physical with the NP and then had to get bloodwork done. Oh, boy! What a scene! The tech could see how wild she was just seeing the tubes and asked if we needed a 'holder'. We both said, " Oh, yes!" Thankfully, the 'holder' was fantastic with her. She asked Sumana's favorite song and she said 'Jesus Loves Me'. Well, let me tell you, that African American woman sang verses and tunes I'd never heard before. It was sooooo beautiful. It really took Sumana's mind off the whole needle thing. The woman said, "that's the way we sing it at MY church!" It was sooo cute!
So, we call Friday afternoon to find out her surgery time on Monday. All we know now is that it'll be early afternoon. That will be a long time without food, but I think she can do it. She's pretty tough when she wants to be. I hope to call Dr. Sanders' office tomorrow and get her VEPTR surgery scheduled. It seems like we've had a ton of progress in just a short time. It's funny how the wait seems so long, then things happen so fast I can barely keep up!
Monday, May 4, 2009
Also, Dr. Sanders is in surgery tomorrow, but his secretary was nice enough to offer to e-mail an update to him so that he can stay in the loop. I guess we'll have to see what tomorrow brings before we know when a surgery date can be set. I'm pretty excited to have Dr. Silberstein explain those beautiful, time-intensive pics!
Sumana would like you all to know that she did push ups today. Miss Kristen (her PT) was very impressed with her trunk control. Way to go, girl! She 'says' she did 30, but I'm thinking it was 15. Whatever way you count it, it is quite an achievement. Sumana can't wait to show off her talent to her dad and big brother, Jeffrey!
Saturday, May 2, 2009
The tech had no idea what she was up against with Miss Sumana's spine. In her words, Sumana's spine is so 'out there' that she had to do tiny scans each time, instead of the larger scans that are standard for a typical spine. (Her thoracic and lumbar spine were scanned). Her spine curves and twists in so many directions, it took FOREVER to scan. Thankfully, (again!) the tech consulted with three (count 'em, 3!) radiologists. They were able to pinpoint areas that were crucial to scan and they also were able to cut out a bunch of scans that weren't as necessary. So, that's where the 3 hours came in. If they had scanned the entire area, we would have been there much, MUCH longer. Now we have to hope that Dr. Silberstein can see what he needs to see, otherwise he may want to re-do the scans with the contrast dye. (oh, no! The needle!)
Sumana got one short 'intermission'. She got to sit up (ooooo!) for a few minutes. I had originally thought that the MRI would be over by 12:30 at the latest, so we hadn't thought of eating lunch beforehand. When we finally finished around 2:30, the poor girl was STARVING! Throughout the whole ordeal, she had such a good attitude, (well, except the needle surprise!). I can't get over how well she did. Her back started spasms at one point (just before her 'intermission'). But she had been laying still for almost 2 hours!
And, I have to mention big sister, Gretchen. While Sumana was on the MRI table, Gretchen was in the waiting room with our respite baby. What a trooper! Both of my girls went above and beyond any of my initial expectations. I hope we don't have to repeat this adventure!
I'll call Dr. Silberstein's office on Monday to find out what he thinks of Sumana's pictures. I'll let you know when I know! Maybe we can even schedule the VEPTR surgery with Dr. Sanders! I like to be optimistic. The wait has seemed pretty long, already!