Sunday, December 20, 2009
Wednesday, December 16, 2009
I haven't mentioned in the blog, but about a month ago Grandma (86 years old) lost her balance in her garage and fell, hitting the back of her head. She got a pretty 'good' concussion out of the deal. Grandma hasn't been feeling very well since then, though she has been improving. She's always been healthy and active, so this setback has been trying for her. Please pray for wisdom for the doctors to diagnose what's going on and for her strength to come back. Thanks so much!
Tuesday, December 15, 2009
As an update, my dad is doing better. He actually DOES do the infusions himself (wow!) Today he did grocery shopping with my mom and went for a short walk up their road. Considering all he's been through, I can see forward progress. He sees his primary doctor tomorrow and next week he sees the cardiologist and has another echocardiogram.
Sumana has been busy doing her OT and PT exercises and schoolwork. She is not only getting stronger physically, but is improving by leaps and bounds in her reading, writing and 'rithmatic! She gave a handwritten note to Miss Kristen today and received some pretty high praise for her improved handwriting. (Thanks, Miss Kristen!!!)
Sunday, we all (except Jeffrey), went to Gretchen's Christmas choral concert. It was soooo beautiful! There was a mix of Christmas standards, jazz and her group did a selection of Latin and Spanish classical Christmas music. I don't think I've heard such beautiful choral pieces since Greig and I sang in our college choir!
I keep forgetting my camera . . . even when I put it right next to my purse!! I'm REALLY going to try to get some pictures for you over the next few days. There is lots happening and I'd love to have you share it with us!
Tuesday, December 8, 2009
Sumana has had 2 VERY exciting days. Last night she was awarded The Clubber of the Month for November at her AWANA club. She was sooooo very proud. She has been working hard at learning Bible verses and completing various projects to complete her second Truth and Training book by the end of the school year.
Today she saw Dr. Hollister for her 11 year check up. Except for her poor vision, she's doing really well. (If you remember back to August, the eye doctor said that Sumana's optic nerve damage is such that her eye does not respond to correction). Anyway, the good news is that the growth she gained through the VEPTR surgery has gotten her closer to the 'normal' growth curve. She has always measured 4.5-6 'blocks' below the normal growth curve for girls her age. NOW, she is only 3.5 blocks below. An impressive improvement!
More good news (and a bit sad, too): Sumana has reached all of her goals for Occupational Therapy and has been discharged until her next surgery, (at which point we'll re-evaluate her need for any further OT). Mr. Darryl has worked really well with Sumana. He's had a balance of challenging her and teasing her that makes her work really hard. She can now lift a drinking glass and drink without her hand and arm shaking. She also can put on and take off long sleeved shirts independently. (She was not able to do these things after surgery). We are very grateful to Mr. Darryl for his attention to Sumana's weaknesses and his help in giving her the exercises she needed to regain her strength. Way to go Sumana and Mr. Darryl!
Monday, December 7, 2009
The plan is to meet with the county health nurse tomorrow morning and get a routine figured out for his daily iv injections. (maybe my mom will be getting help???? I didn't quite catch that info!) Thanks for your continued prayers!
Wednesday, December 2, 2009
First of all, we have her first expansion scheduled for February 8! We were able to get all of her annual appointments and check ups scheduled, too, so we only are making ONE trip to Rochester the week before her surgery. Then, it should just be one night in the hospital and home again, home again diggity-dog!
Sumana is continuing to get stronger and stronger. She got word yesterday that she will probably be able to be discharged from Occupational Therapy soon. Yea! She has met all of her post-op goals and has regained (and gained!) new strength in her upper body. Now we'll be back to concentrating on her lower half! She still hopes to walk for Dr. Sanders WITHOUT crutches at her February appointment.
We start our Christmas celebrations this week! Sunday we enjoy 'Christmas' with my Dad's side of the family. It will involve lots of children so Sumana will be in her glory! It actually will be nice to start early with the celebrations . . . we have them spread out all month!
Thursday, November 26, 2009
Friday, November 20, 2009
We FINALLY heard back about a possible surgery date in February. Unfortunately, I was at work and missed the call. UGH!! However, it looks like Dr. Sander's schedule is pretty wide open in February, so we can basically choose the date we want. This is for Sumana's first VEPTR expansion . . . her first 'cranking up'! I'll try to finalize things with the secretary on Monday. She has all of her annual check ups with her specialists in February, so it'll be helpful to have the surgery date set.
Monday, November 16, 2009
Saturday, Andrew, Sumana and I went to Jeffrey's band concert. His band, 'A Decent Tuesday,' played in Naples. I was so proud! The band writes their own songs and I must say, their music is really developing as time goes by. It was loud, of course, but the band had lots of energy. I was afraid the noise would really bother Sumana, but she really liked it!!
Sunday, Sumana sang in church with her kids choir. They did such a good job! It was a song that had lots of hand motions. Sumana really kept up with the motions AND kept her balance!! (falling over would have been a bummer!!)
This week appears to be quieter. We're busy planning Sumana's 11th birthday party, though. She has tons of ideas, but we're probably scaling WAY down! The easy part is chocolate cake, chocolate frosting and M&Ms! Yum!!! I'm glad she shares my taste for chocolate!!
Wednesday, November 11, 2009
I am sooooo tired of wiping and spraying and cleaning, but I continued again today. Also, I've lost my main dish washer and laundry helper, so I've added those chores to my 'routine'(do you hear the violins????). Woe is me . . . carer of the sickos!
Sorry for the whining! Last night I really did not feel very well and this afternoon I'm still not convinced how I'm doing. I really hope I can ward off the sickness; I have my new work schedule and am supposed to work Thursday and Friday. Wipe and clean and spray some more!!! Drink some water and then drink some more! Hey, a friend recommended elderberry juice to shorten the duration of the flu . . . I may have to give that a try!
In the midst of our drama, Sumana continues to do well. She's once again getting stronger and stronger. Her PT, Miss Kristen, and I could really see HUGE improvement in her strength yesterday. Kristen mentioned that the VEPTR placement allows her to use muscles she never was able to use before. How cool is that??? By straightening her back, she will have increased lung capacity and increased muscle control across her back. I still am amazed to see the benefits of the surgery already and look expectantly to the future. God really is good, isn't He??
Monday, November 9, 2009
Good news. Andrew does NOT have H1N1. So, even though he's been one sick puppy, he isn't spreading H1N1 to the rest of us. There's one less worry, huh?
Oh, yeah. Sumana. This is HER blog . . . She's been doing pretty well throughout this sickness phase of our family. She actually is seeming stronger. I wrote a couple weeks ago about how I was concerned about her tiring easily and seeming weak. Last Thursday she walked longer and faster on the treadmill than she ever has. In addition, it was a better quality walk. Since then, she's continued her exercises and tries walking around the house with NO crutches. It's so cute to see her determination kick in when she tries something like that. I still think that aspect of her personality is going to take her far. We all get to sit back and watch the story unfold! You go, girl!
Friday, November 6, 2009
The doctor is well-aware of Sumana's condition, so he also prescribed Tami-flu for her, pending the results of Andrew's H1N1. He also shared the 'good' news that while we've managed to keep the sickness isolated with good handwashing and LOTS of Lysol wipes; the system is bound to break down somewhere. He's concerned for our WHOLE family. UGH!!!! Greig's picking up a homeopathic flu remedy for us and believe me, at the first sign of anything we're taking it!
So, I guess I should have been less specific in my prayer request!!! Pray for health for ALL the Holmans, 'cause Sumana has to live with us!!! (LOL!!)
Monday, November 2, 2009
Thankfully, I called her pulmonary doctor's office (AGAIN!) and spoke to the right person. After being on hold for 10 minutes (??!!) I was asked to bring her in immediately. They had reserved a dose for her because she is in the high risk category. So, we hopped in the big, green van and drove to Rochester. Though I've been basking in the glow of not traveling to Rochester, I was more than happy to make the trip today. We even got child-sized face masks for her to wear to AWANA and church. That seemed to make her happy, so the rest of us are happy, too!! AND . . . Gretchen was able to get her H1N1 at the college today. Yea!! Two Holmans down, four to go!
Please continue to pray for Sumana's health. She still doesn't seem sick, just weak. I think we're going to make her walk more . . . not so much TV and coloring! We'll see what happens!
Saturday, October 31, 2009
Tonight we went to Crosswinds for the evening service. I'm soooo glad we went. The new pastor, Joe Roberts, shared a really challenging message. I've always struggled with the idea that Christianity seems to tell people, " You've messed up. You need to get right with God and get your ticket to heaven." That's it. Joe quoted a source that really resonated with Andrew and me. He said this view is like an item that has a bar code. Once it's scanned, 'Blip,' it's good to go. Is that all there is to Christianity? 'Blip' . . .you're good to go????
Joe shared God's original plan, His dream, for this world. He started in Genesis. God created the world and the things in it for us to care for. He had a plan, an order so that everything would exist in harmony. Jump ahead to Revelation. God makes His throne among His people, here on earth. His dream is fulfilled. All the stuff in between Genesis and Revelation is how we messed up and God had to fix it; how He had to make a plan to get us back to His original dream.
Now I don't want you to get me wrong. Forgiveness is still important. Trusting in the work of Christ on the cross is still paramount. However, focusing on that and making that one-time decision the bulk of your faith is selling yourself (and God) short. He wants us to LIVE life here and now . . . to find fulfillment in what we do now . . . not just floating through life waiting to get to the 'end'. He wants to use us NOW and throughout eternity.
I was really jazzed to hear this view of Christianity. It makes so much sense. It still addresses the need for Christ to make us right with God, but it also addresses the needs we face everyday and the needs of the world around us. Once we are made right with God, He can use us and we can impact our world for Him. Please check out Joe's message for yourself at crosswindsonline.org
PS-11/1/09- I just looked at my notes from last time Joe spoke. The bottom line: it's not just about accepting Jesus . . . it's about following Him.
Friday, October 30, 2009
On the Sumana front, she has me worried a bit. She didn't have the stamina to do the treadmill very well at PT yesterday. This whole week she's complained about her exercises being too hard. And, she's coughed and sneezed a few times. Ordinarily, one might think . . .' big deal.' But, this is Sumana we're talking about. In the past, weakness or cough immediately preceded sickness. Please continue to pray for her health. BTW, she still hasn't gotten the H1N1 vaccine. I've found the mist available, but she needs to have the injection because of her compromised lung function. I saw the newspaper yesterday and H1N1 has arrived in our area, so I'm really bummed she hasn't gotten the shot yet. I'm calling her lung doctor today to see if she has any ideas of where to find the vaccine.
Monday, October 26, 2009
So, today Sumana played in the leaves. I raked a big pile and told her to back up and fall into it. She looked at me like I was crazy and carefully put down her crutches, got on her hands and knees and THEN backed into the pile and sat. My good friend had just called me from Alaska, so I just left her there thinking she would figure out how to play in the leaves. But no. She just sat there looking at me, wondering what all the fuss was about leaves!
When I got off the phone, I grabbed a bunch of leaves and dropped them on her head. 'Mom, what are you doing??!!!!' We're PLAYING in the leaves, Sumana!!! 'But my hair is getting dirty!'
Oh, brother! She lasted about 20 minutes and was VERY ready to be 'done'. I'm sure it would have been more fun with other younger kids, but it was such a nice day . . . .I was enjoying it!
It's times like these that I realize yet another thing that she missed out on by coming to our family as a 5 1/2 year old. I have tried to 'catch her up' on nursery rhymes and songs, but we always come across one she' doesn't know, or has forgotten. I makes me sad to realize how much she's missed. I know we've done our best to expose her to lots of things, even though they often seem too 'young' for her. But, it is sad to know that a lot of those precious preschool moments are lost forever. Hey, here's a good lesson for all you young-up-start parents!! Play in the leaves with your kids! Read them nursery rhymes like crazy! Sing them stupid songs! They'll be 5 before you know it and ready to be 'grown up'!!! (Please catch the sarcasm in my tone! Parenting is tough work . . . I wouldn't want to repeat the preschool years!!!)
This last picture is at AWANA Bible-ween night. Sumana is the wee little man in the sycamore tree . . . Zaccheus! Check out the happenin' mustache. She looks wayyyy too Hispanic, though!
Saturday, October 24, 2009
Anyway, the missionary struggled to find ANY connection, any analogy between the tribe's beliefs and customs and Christianity. He was about to give up ever finding a connection when he witnessed the giving of a 'Peace Child' as an assurance of good will between tribes. Each warring tribe would surrender a 'Peace Child' to the other and as long as the Peace Child lived, there would be peace between the tribes. However, if the child died, war would start all over again. Richardson was able to share the hope of the once-for-all Peace Child, Jesus. From that point on, the tribe changed for the better and influenced tribes in the entire region for Christ. What an inspiring story!
Another story we started recently is Walk the World's Rim, by Betty Baker. Here's another incredible story of perseverance and maybe even God's grace. It's a work of historical fiction following the story of Esteban, a slave who came with the Spaniards who 'discovered' Florida in the 1500s. Though nearly 600 men perished, Esteban and 3 others pushed west from Florida, trying to make it to the Spanish colony in Mexico City. Everywhere they went, they prayed for the sick and did all they could to help restore health. Since they had come from the east and healed many, the Indians called them 'gods-from-where-the-sun rises'. Currently, we're at the point that an Indian boy joins their trek to Mexico. His father, the chief, wants his son to get to know the God of these men. The boy, himself, admires the men and hopes to learn more about their God.
Jeffrey, some of his friends and I have been racing each other through a series of books. It's been funny to see who pulls ahead and who catches up; who gets the next book first. When I was in the hospital with Sumana I read so much that I had to get Greig to 'steal' back a book from one of Jeffrey's friends, so I could keep moving through the series. Since being home, my reading has slowed WAYYYY down, so I had his friend on my case to finish the book so he could do the same!!!
Well, Sumana is a reading maniac. Every night she takes books to bed with her. American girl stories, Berenstein Bears, Arthur and of course Amelia Bedelia. For school she has to read shorter chapter books. It's still quite a challenge for her, so I read a page then she reads a page. Greig mentioned this week how far she's come in a year. It was soooo good to hear that! I think I'm too close to the situation to see the improvements. Teaching kids to read has always been my biggest challenge. I'm glad Sumana's the last one! I think teaching another one would send me to the loony bin for good!!!
PS-- Praise God for the good word we've been hearing about Giana. She was on room air and alert the evening after surgery. I guess she's struggling with elevated heart rate, fever and rash. However, it sounds like she's doing great and is signing to her family. Please continue to pray. Here's the latest link to her site: http://www.caringbridge.org/visit/ourgirl
Tuesday, October 20, 2009
So here's the scoop: she'll have a pre-op appointment in February to get up-to-date x-rays. Then she'll go in for surgery. Dr. Sanders says there will be 2 incisions at the adjustment sites. each rod will be lengthened, then they'll 'close her up'. Because of the 'excitement' she caused at her initial VEPTR surgery, Dr. Sanders is going to reserve a PICU room and he wants her to spend the night after the lengthening. If she doesn't need the PICU room, he'll move her to regular 'floor' room, just to monitor her overnight. Since the surgery is usually done on an outpatient basis, I'm pleased with his cautionary approach. Sumana is not the 'average' kid (in more ways than one!!)
So, we also threw in a brace check up and PT for good measure. In between appointments we met some homeschooling friends at the Strong Museum of Play. Unfortunately, I forgot my camera (AGAIN!!) I'm sooo bummed! Sumana had such a blast. She LOVED shopping at the mini-Wegmans and checking herself out (barcode beeper and paper receipt included!!) She also LOVED the Berenstein Bear section. She reads those books EVERY night before she goes to sleep. I often have to take them away from her so she'll go to sleep! She got to do leaf rubbings, egg processing, jumping contests and played a make-shift xylophone. All in the Berenstein bear area.
Well, a couple of prayer requests. In the midst of our running around yesterday, I was not feeling well. I've been fighting something off on on for days now. Even today I'm not feeling much better. It's a low-grade fever, cough, sore throat . . . yuck! Just what Sumana doesn't need! So, pray that she stays healthy and I get better FAST!
Also, please pray for our little friend, Giana. She has her VEPTR surgery on Thursday. She's got lots of complicating factors, beside the fact that she's only 15 months old! Dr. Sanders will be doing her surgery as well as Dr. Campbell (the c0-inventor of the VEPTR). She and Sumana have a special bond . . . two very special little girls. I know the Bisnett family would treasure your prayers. Here's their caringbridge site: http://www.caringbridge.org/visit/ourgirl/journal/1 or http://thebisnetts.blogspot.com/2009/10/and-breathejust-breathe.html
Sunday, October 18, 2009
Sumana has a bunch of questions for Dr. Sanders. 'Will my expansions really be 'in and out'?" (outpatient) 'How do the rods make my back straight?' 'When will my lungs get stronger?' Etc., etc.!
So, we see Miss Kristina at 9 to check Sumana's braces. Then, we head over to the Strong Museum to meet some homeschooling friends. The teenage boys are already planning to get lost in the new comic section of the museum. Sumana is hoping the Berenstain Bears are still there. Me? I could sit and watch the fish all morning! We'll leave Andrew at the museum with our friends and Sumana and I will head back to see Dr. Sanders. Time permitting, we'll get to spend another hour at the museum before heading to PT.
Oh, yeah. I forgot to mention that we're dropping off the van to get some repairs done BEFORE we head to Rochester. So, at least this time, we'll be putting miles on a loaner instead of our vehicle.
Wednesday, October 14, 2009
Meanwhile, Andrew and I headed out and cleaned the Astro van interior. Tomorrow I'm getting it washed and waxed. Monday we'll have it in the shop to get some repairs done, then we should be good to go, (well, I suppose we should check the tires out . . .) I'm convinced that God is behind this whole matter and even though it's disappointing, we're ok with it. We love our big, green van!
As I've mentioned, Monday is Sumana's last scheduled appointment in Rochester til February. We're trying to make plans to meet some friends at the Strong Museum of Play. I can't wait!! We go at least once a year and it doesn't matter the age of the child, they ALL have fun! (Last year we took Andrew and Shantell . . . then 12 . . . they had such a blast checking out the collectible toys and grossology exhibit).
Please continue to pray for Sumana's health. There is soooo much 'yuck' out there, I almost hate to take her out of the house. I also am fighting with our teens about them getting flu and H1N1 shots. Though the flu is rampant at a nearby college and not at their's yet, it'll come. We can't afford to have it in our house. It's another lesson of 'it's not about you'. I'll keep you posted on our progress!
Tuesday, October 13, 2009
I can't tell you how much I appreciate having a computer. How much it helps with schooling, researching medical stuff and cars, banking, how it keeps me connected with my friends and family . . . . But, as much as a love it for these reasons, I hate it more (I think). It sucks time away from our teenagers (therein lies a daily battle to reign them in). It subjects us to all kinds of garbage that we don't even ask for! This has been my battle lately. I can't google something, click on a site and expect to go there. NO! I get taken some random place, from health and beauty to sports to morally questionable sites, AND (get this) I got taken to a Jesus Loves you site. Everyone has their hand in the pie. And, I don't even ask for the stuff! It just pops up when I'm trying to do something else! UGH!!!
Anyway, enough griping. Just wanted you to know we're still here, doing well. Our last Rochester appointment is on Monday! I can hardly stand it! To have a week without a trip to Rochester???? I'm hoping to get used to that! BTW, we'll be driving a new-to-us van to the appointment next week. If all goes well, we'll be the proud owners of a 2007 Hyundai Entourage tomorrow. I'll try to post pictures . . . if my computer will let me! LOL!
Wednesday, October 7, 2009
Sumana to Dr. Voter regarding the cough assist machine: 'You know how you said the machine would force air in and then suck it out? It kinda makes me want to cough.' (Thus, 'cough assist') Dr. Voter told her to go with it!
Sumana doing her Explode the Code: 'Mom, look. Church starts with a ch and ends with a ch.' Mom says, 'What's missing?' Sumana, ' U-R' . . . pause . . . giggles . . . oh, YOU ARE!! Followed by hysterical laughter. Boy, is she easily amused! ( just like her mom, huh?)
I know there are more treasures to record, but those are the ones that come to mind. Today we actually stayed home all day! I got caught up on some cleaning and laundry and Sumana and Andrew got a TON of school work done. Tomorrow is pretty quiet, too, just PT and guitar for Andrew in the afternoon.
Tuesday, October 6, 2009
Well, after the wedding and pictures we headed out to the reception. Sumana was a dancing maniac! I could tell she wanted to join in but didn't know how. So, I took her hands and took her out on the dance floor. What a riot! She had soooo much fun! Her cousins Josh and Kylie helped her a lot on the dance floor, too! (check out the pictures!)
Monday, October 5, 2009
When we got back to the church we grabbed a few quick photos and then were seated. What a beautiful ceremony! It was held in a small stone chapel . . . GORGEOUS! Jeffrey and Greig were 'working' and Sumana 'had' to sit with Grampy and Grammy, so Andrew and Gretchen and I ended up together. It was fun to watch their excitement as their cousins participated in the ceremony!
Thursday, October 1, 2009
So, since all the home bases were covered, I was able to run errands and generally just goof off for the afternoon. It was WAY too much fun! I happened to take a dress back to a store for an exchange and it was so quiet that I had the undivided attention of 3 saleswomen! It was fun trying on things I might not have thought of on my own. I actually exchanged the dress for a really sparkly, trendy top that one of the saleswomen found for me. Woo-hoo!
One real bummer today is that I had to say goodbye to another friend. First, one of my best friends moves to Alaska, now another one leaves for Virginia on Saturday. We were able to visit Gina and her family last year in Oklahoma as part of our college road trip. Her family rather unexpectedly moved 'home' in August. So, really the past 2 months have been a 'bonus'. Nevertheless, it stinks to have to say goodbye. At least Virginia is a whole lot closer than Oklahoma!!
Tomorrow we pack up and head to Allentown, PA for Greig's nephew's wedding. Packing the clothes is no big deal. Packing all of Sumana's respiratory stuff . . . that's another story. I really need to take everything she needs NOW and anything she might need if she starts to get a cold. UGHHHHH!!!!
I'll try to get lots of new pictures of Sumana all dressed up with her family. She really looks so much different since her surgery. It's fun to show it off in pictures. (If I can just remember to pack the camera!)
Tuesday, September 29, 2009
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!!!
Sunday, September 27, 2009
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!)
Saturday, September 26, 2009
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!!!
Friday, September 25, 2009
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!
Wednesday, September 23, 2009
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!
Tuesday, September 22, 2009
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!
Monday, September 21, 2009
Sunday, September 20, 2009
So, even though we managed to get out to Crosswinds last night between treatments, we couldn't swing ANYTHING at Middlesex Baptist today. Tomorrow I'm cancelling her brace check up so that she only has her post-op appointment with Dr. Sanders. Hopefully, that will help keep her on the 'healing track'. Thanks for your continued prayers!
Friday, September 18, 2009
We ran some errands and before I had finished all the errands, Sumana 'hit a wall'. She started coughing and having trouble breathing. So, thus ended the errands . . . postponed til another day. We came right home and got the albuterol and meds going again. She definitely is still dragging tonight, but sooooo much better than yesterday!
Sumana has an adjustment scheduled for her braces on Monday and the ever-anticipated post-op appointment with Dr. Sanders later in the day. That'll be an exciting day!
Thursday, September 17, 2009
We got in first thing to see Dr. Byer from Sumana's primary's office. Once again, it's her left lung that's the culprit. He's concerned enough that we go back to see him again tomorrow morning to make sure things aren't any worse. In the meantime, we're going to squeeze in 4 respiratory treatments today and have started on an antibiotic. I also informed Dr. Voter (her pulmonary doc) of what's going on. So, I'll keep you posted.
I've been pondering the title "Sumana's Faith" lately, too. Faith is an unquestioning belief in something, a complete trust, a resolute stand. What a tough word! I can see that while my faith in Christ has always been there, I certainly have questioned and wavered a bit in His plan for our family. His way is always best, but that doesn't mean it's easy! In regards to Sumana, her faith in Jesus is so real . . . it's beautiful to see. And then, when you consider her determination to overcome challenges in her own life . . . WOW, what a package! She really is such a blessing! Please pray for her health today and for wisdom on my part to know who to call and what to do. Thank you!
Monday, September 14, 2009
Sunday, September 13, 2009
Thanks to the Ronald McDonald House and lots of prayer, I adjusted really well to PICU life. I stayed with Sumana the majority of the time, but I got out to the play deck almost everyday, I got a good night's sleep most nights, and there was always plenty of food in the RMH frig to choose from. However, I'm thinking I adjusted a little TOO well.
When my dad picked us up last Saturday to take us home, I had the most bizarre experience. EVERYTHING was overwhelming to me: the sun, the crowds at Wegmans, the noises. Yikes! I guess being isolated in our little PICU room really had an affect on me. We had plenty of visitors and there were plenty of noises and plenty of nurse interruptions, but I really adapted to them. I guess it was still a controlled, predictable environment, (in an ICU sort of way!)
I realize you probably can't relate and it may not seem to be a big deal . . . but, WOW! Did it ever affect me! Today, I took Sumana to Sunday School and I had a very similar reaction at church. It really has something to do with crowds, noise, etc. It's funny that shopping at the outlet didn't affect me . . . of course it was very quiet/uncrowded there and we had a specific objective.
Anyway, it's not a very pleasant feeling. Hopefully, I'll get over it soon. At least we've adjusted well to being home. We're down to three respiratory treatments a day and I only have to get up once at night to help Sumana to the bathroom. It's just amazing to me to think that we've only been home a week and Sumana is doing stairs, walking to and from the van, and actually PLANNING on going to AWANA tomorrow night. God is GOOD!
Saturday, September 12, 2009
Friday, September 11, 2009
After our morning respiratory therapy I asked if she was up for shopping. MY GIRL, said 'YES'! So, we made a trek to the Waterloo outlets. Sumana got some new shirts, dresses, pants and sweaters. She had sooo much fun! She loved telling the sales people that she had surgery and grew so much that she needed new clothes!!
Because she slept in so late and then we did the 'shopping trip', I decided today was a good day to try three respiratory treatments instead of four. Sumana did not cough AT ALL today til dinner time. I think I'll see how the night goes and how she is in the morning. If it goes okay, I think we'll call three treatments 'good'. Somehow, three is so much more manageable than four. I'm sure Sumana will be happy for the change, too!
So, 'back stories', I already am out of time for them. But as a reminder for me, and a teaser for you, I have stories about the PICU and PICU withdrawal to share. Also, I have new 'after' pictures of Sumana's back, but they really don't show the change. I'm going to try some different angles and try to get her to sit 'straight', now that her back allows her to. (Miss Kristen noticed that she is still sitting 'lopsided' out of habit. Something else to work on!)
Wednesday, September 9, 2009
Tuesday, September 8, 2009
Monday, September 7, 2009
Sunday, September 6, 2009
Now, mind you, though it is wonderful to be home, it is NO picnic. We have to provide aggressive respiratory therapy every 4 hours around the clock. Add in frequent bathroom breaks (we're still pushing fluids), and that means we rarely get an hour break. That was particularly hard last night, I didn't get more than 2 hours of sleep at a time; I didn't officially 'get up' today, til 3pm!
Friday night was rather 'memorable'. Sumana was experiencing a lot more pain and discomfort when she was 'cupped' (whacked on with a respiratory mask). So, I offered to stay with her til after her midnight regime. Then, I planned to go up to the RMH and sleep on an air mattress. But when midnight came, our nurse got really busy and didn't do the cupping. By one a.m. I went to ask her about it, and a resident told me it looked like we would be moving 'to the floor' soon because they had several new patients coming in.
Long story, short: We didn't move til 3:30ish and by the time we got settled in and ready to sleep, the orthopedic resident came in to make sure she was okay and THEN the x-ray tech showed up. UGH! We didn't get to sleep again til 5:30!! Dr. Sanders came in at 8ish and said he thought we could go home. I was a little uneasy because her PICU doctor hadn't seen her chest x-ray yet. Dr. Van der Jagt was more than happy to look at her x-ray with me. We saw definite improvement, but still lots of fluid hanging out in her chest cavity/lungs. Dr. Van der Jagt felt it was okay for us to go home as long as we maintained a consistent regime of respiratory therapy. He was so pleased, that he even left the PICU to go see Sumana and give his good wished to 'one of his favorite patients'. (she makes an impression on everyone, doesn't she??)
Today, Sumana walked out to the deck several times. Then, this afternoon she wanted to go out to her sandbox!! She walked with her walker all the way out to the sandbox and played for over a half hour. By the time she got back to the couch, she had been up and around for a whole hour! What a trooper!
Thank you, again, for your prayers and support. Please continue to pray for Sumana's healing, especially her lung situation. We're hoping to hang in with 'the plan' til her appointment on Tuesday. Then, hopefully, we can drop the nighttime therapy. Also, I'd like to ask you to pray for my health, too. I usually have a hard time staying healthy when I don't get enough rest. I'm hoping to break the cycle this time, so I can be there for Sumana.