Now that we’re home, I actually have less time to blog than I did in Birmingham. The apartment was a lot smaller than our house, which was a blessing in terms of things like cleaning, and the drive to therapy didn’t take as much time. Sarah Kate will be having therapy three days per week in Decatur, but we will still make the drive to Birmingham twice a week (this week it’s Monday and Friday, and we expect that to be the case every week for awhile). All of that to say…the blogs will continue, but they will be fewer and further between. I’ll try to post at least once or twice a week.
Friday was a very long day for us. We showed up for therapy at noon and left at 4:30 to come home. Sarah Kate was working hard most of that time – only about thirty minutes was “down time,” and that only because her braces had to be recast. I’m not sure who those braces were made to fit, but it definitely was not my child! We hope to receive a new and improved pair by the end of next week, and I also hope her Nikes hold out that long. It’s difficult to find shoes that fit over the braces (and don’t look ridiculous!), so she has been wearing the same pair of Nike shoes – plain white with a pink swoosh – since last March. Because she has done so much crawling, the inside edge around her big toes has worn completely through the rubber down to the leather. I’m crossing my fingers that we don’t see daylight or her pigs before next Friday.
The reason for having two trips to Birmingham each week, instead of one like we had expected, is because they want her to have one day each of week of occupational therapy (OT) in addition to the PT. She is intensely fearful whenever she is expected to walk without holding onto something, even if the therapists are behind her holding onto her waist or legs. Her proprioception (the sense of where her body is in space) has not completely returned, so she is afraid of falling even when she knows that she’s not in danger of doing so. She was similarly afraid several months ago before she began to take a few independent steps, but eventually got past it and was able to let go without fear. We are confident that she will be able to do it again, but when is a different matter.
We’ve come to the point now where we’re getting into the difficult part of the journey. Therapy is just as frequent, but we’re probably not going to see changes coming as quickly. We’re all tired and a little bit grumpy. We have been blessed by your prayers – continue to lift us up as we begin this steeper part of the journey.
When you walk, your steps will not be hampered; when you run, you will not stumble. – Proverbs 4:12
Monday, January 30, 2006
Thursday, January 26, 2006
All Wrapped Up
Only more day and we’ll wrap up our time here in Birmingham. Although we will still be coming back weekly for a while (and for another three weeks later this year) we’re preparing to say goodbye to our little apartment. We still have one PT session and one OT session to go, and then we’ll be heading home to Scott, Tessie, FeFe, and Doc.
Sarah Kate had a very good day today. She walked up and down the stairs and in and out of the therapy offices using her canes. She is still very apprehensive about standing alone – she makes it a few seconds before she realizes that she’s “alone” and then grabs whomever or whatever happens to be close by. This afternoon, Carrie wrapped up her abdomen with a bandage-type material. The purpose was to make her feel more secure so she doesn’t freak out when the PT’s try to let go of her when she’s standing or walking. She worked very hard again – standing up and sitting down on a bench and walking with her canes.
The canes…well, that’s another subject altogether. Generally, I believe they are pleased with her progress. One cane has a red handle (right) and the other has a black handle (left), and I’ve got a red barrette clasped to one shoe (left) and a black one clasped to the other shoe (right). Since she’s really too young to know left and right very well, they are teaching her to move “black cane – black foot – red cane – red foot.” She does really well with the “black cane – black foot,” but then it kind of goes “red cane – small step red foot – black foot – small step red foot.”
It’s a small miracle to watch her walk. Even though she could walk with the canes before surgery, it’s the subtle uprightness of her posture that leaps out at you and causes you to pause and just say “Wow!” It’s like eating vanilla ice cream all of your life, thinking it’s so great, and then one day someday serves you Blue Bell Cookies ‘n’ Cream (or Tin Roof or Dutch Chocolate or…) and you realize you just didn’t know what you were missing before!
Walking, whether with the canes or with help from the therapist, is without a doubt the one thing that Sarah Kate is most apprehensive about at this point. Most of the time she is walking to me, and always she has a running commentary going the whole time (“I’m coming to you, Andi. I’m going to give you a big hug. You’re going to give me a big hug. You watching me, Momma?”) Most of the time, too, when she reaches me and grabs me in a great big bear hug, the first words out of her mouth are “I love you, Momma.”
Be imitators of God, therefore, as dearly loved children - Ephesians 5:1
Wednesday, January 25, 2006
Standing on the Promises
What a great day we had today! We had a leisurely morning and headed out for a 1:30pm PT appointment. For the first couple of hours, Sarah Kate had it kind of “easy” relative to the first two days of this week. She worked on knee-walking backwards, standing up and down, and going up and down stairs. She then spent about 50 minutes in the prone stander.
At the end of the session, Lisa worked with her at length on her standing and walking. It is now a “rule” that when it’s time to go, she has to walk out of the office – either with canes, holding onto the wall, or being assisted by Lisa. She did cry this afternoon, but not until “on the way out” and only because she was afraid. Lisa was helping her to stand from a seated position, and to walk without assistance. She couldn’t do either one well, but the fact that she was able to do it at all is very encouraging. I am absolutely certain that when she gains her confidence, she will be able to do both on her own. I was so proud of her today!
I sought the LORD, and he answered me; he delivered me from all my fears. – Psalm 34:4
At the end of the session, Lisa worked with her at length on her standing and walking. It is now a “rule” that when it’s time to go, she has to walk out of the office – either with canes, holding onto the wall, or being assisted by Lisa. She did cry this afternoon, but not until “on the way out” and only because she was afraid. Lisa was helping her to stand from a seated position, and to walk without assistance. She couldn’t do either one well, but the fact that she was able to do it at all is very encouraging. I am absolutely certain that when she gains her confidence, she will be able to do both on her own. I was so proud of her today!
I sought the LORD, and he answered me; he delivered me from all my fears. – Psalm 34:4
Tuesday, January 24, 2006
I Love Books
I love to read. When I was a kid, I would get up before my parents on Saturday mornings and read books. My mom would walk through the living room, speak to me, and head into the kitchen to fix breakfast. Later, I would walk into the kitchen and ask her when she had gotten up – I would be so engrossed in my book that I would never remember having spoken to her. It’s been tough since Sarah Kate was born to really focus my attention on a book like I did when I was a kid – it’s that maternal attention deficit that goes along with having a preschooler.
Retreating to the waiting area of the therapy office has given me a chance to catch up on some of my reading. I started a new book today – a history of the early church fathers, too, not speed reading fluff – and read sixty pages of it while Sarah Kate had therapy. The day had started out pretty well – she was well behaved and we actually went to the zoo for a couple of hours. She started up again, though, as soon as we drove into the Children’s South parking lot. She is still having control issues, although today she also was anxious about some of the exercises. She is very concerned about falling backwards, so anything that makes her feel as if she may fall is something she is strongly opposed to doing. She is doing well walking, however, and is getting much better with the canes.
I spoke with Lisa today about my conversation with B’s dad yesterday, and she agreed with him that Sarah Kate is very much like B at the same stage. She stopped short of stating directly that she expects Sarah Kate to walk independently, but she did comment on how similar they are and said “and just look at him now!” It gave me hope in spite of the difficulty.
Scott came down to be with us tonight, and we’ve had a good evening. We only have one more night on our own – my mother will be coming to stay with us Thursday night to help get the apartment cleaned and packed up, and we will be coming home on Friday. As much as I am looking forward to being home, in some ways I will almost miss being here. We have experienced so many wonderful blessings and witnessed so many changes in Sarah Kate that it’ll be a different world when we return home.
For the LORD God is a sun and shield; The LORD gives grace and glory; No good thing does He withhold from those who walk uprightly. - Psalm 84:11
Retreating to the waiting area of the therapy office has given me a chance to catch up on some of my reading. I started a new book today – a history of the early church fathers, too, not speed reading fluff – and read sixty pages of it while Sarah Kate had therapy. The day had started out pretty well – she was well behaved and we actually went to the zoo for a couple of hours. She started up again, though, as soon as we drove into the Children’s South parking lot. She is still having control issues, although today she also was anxious about some of the exercises. She is very concerned about falling backwards, so anything that makes her feel as if she may fall is something she is strongly opposed to doing. She is doing well walking, however, and is getting much better with the canes.
I spoke with Lisa today about my conversation with B’s dad yesterday, and she agreed with him that Sarah Kate is very much like B at the same stage. She stopped short of stating directly that she expects Sarah Kate to walk independently, but she did comment on how similar they are and said “and just look at him now!” It gave me hope in spite of the difficulty.
Scott came down to be with us tonight, and we’ve had a good evening. We only have one more night on our own – my mother will be coming to stay with us Thursday night to help get the apartment cleaned and packed up, and we will be coming home on Friday. As much as I am looking forward to being home, in some ways I will almost miss being here. We have experienced so many wonderful blessings and witnessed so many changes in Sarah Kate that it’ll be a different world when we return home.
For the LORD God is a sun and shield; The LORD gives grace and glory; No good thing does He withhold from those who walk uprightly. - Psalm 84:11
Monday, January 23, 2006
A Shadow and Things to Come
It’s a Monday. We came back to Birmingham Sunday night, not quite as fresh as I had hoped, but still better for having been home resting for two days. This week’s therapy schedule isn’t two-a-days like the past two weeks. Some days she has one session and others she has two. Today she had only one session, in the afternoon.
The knee immobilizer that Sarah Kate has been wearing (alternating legs each night) has been making tender red marks on her knees, so it was decided today that she have casts made instead. The casts are not the same as the serial casting that was anticipated, but are instead a “homemade” knee immobilizer. Casts were made of each leg (bright green!); they were then cut off and padding was affixed to the edges. They also added Velcro strips to hold the casts closed when she is wearing them. The casts will need to be worn each night while she sleeps. Sarah Kate is not very comfortable in them – having both knees braced is much less comfortable than just one – and I’ve heard her complaining from the other room. I went in one time to see if I needed to help her in some way, but all she wanted was for me to take them off.
Another shadow over us today is Sarah Kate’s apparent need for control. Both the therapists and I had a difficult time with her again. I say “control” because most of the problems occurred when she was expected to do something specific – get dressed, try to walk, eat dinner, etc. I had to leave the room during PT again, and could hear her saying over and over, like a broken record, “My mommy is going to come back and take me home.” She didn’t want to walk, with her canes or otherwise, although she is doing very well with the canes. She threw a large toy she was holding while Lisa helped her to walk, then later, threw each of her canes. She walked to me at the end of the day using the canes and gave me a big hug. I actually thought Lisa might tear up at the display – little does she know, I’m only the hero when I’m there, not back here at the apartment. When she began to cooperate, Lisa encouraged her to try walking with just one cane, which she has never been able to do before. Although she hated it, she was able to do it, and I was encouraged about her future prospects.
The bright spot in our day was when we saw a little boy I’ll call “B.” B had SDR surgery in September, and he is walking independently. I had spoken with B’s mother prior to Sarah Kate’s surgery, and we have seen him each Monday that we have been here. B’s daddy told me that Sarah Kate reminds him a lot of B at the same stage. When I expressed hope that Sarah Kate may walk as well as B, he would say to me with confidence “she will.” Over and over, I was hesitant and cautious in what I said, but every time he came back with a firm “she will.” It reminded me of a time long ago when a friend of mine insisted, over all of my hoping and calculating and worrying, that what I longed for would absolutely come to pass. She said it with a confidence that I didn’t feel, but you know what? She was absolutely right, and when I looked back on it later, I could see that God was speaking to me through her that day.
Now faith is being sure of what we hope for and certain of what we do not see. - Hebrews 11:1
The knee immobilizer that Sarah Kate has been wearing (alternating legs each night) has been making tender red marks on her knees, so it was decided today that she have casts made instead. The casts are not the same as the serial casting that was anticipated, but are instead a “homemade” knee immobilizer. Casts were made of each leg (bright green!); they were then cut off and padding was affixed to the edges. They also added Velcro strips to hold the casts closed when she is wearing them. The casts will need to be worn each night while she sleeps. Sarah Kate is not very comfortable in them – having both knees braced is much less comfortable than just one – and I’ve heard her complaining from the other room. I went in one time to see if I needed to help her in some way, but all she wanted was for me to take them off.
Another shadow over us today is Sarah Kate’s apparent need for control. Both the therapists and I had a difficult time with her again. I say “control” because most of the problems occurred when she was expected to do something specific – get dressed, try to walk, eat dinner, etc. I had to leave the room during PT again, and could hear her saying over and over, like a broken record, “My mommy is going to come back and take me home.” She didn’t want to walk, with her canes or otherwise, although she is doing very well with the canes. She threw a large toy she was holding while Lisa helped her to walk, then later, threw each of her canes. She walked to me at the end of the day using the canes and gave me a big hug. I actually thought Lisa might tear up at the display – little does she know, I’m only the hero when I’m there, not back here at the apartment. When she began to cooperate, Lisa encouraged her to try walking with just one cane, which she has never been able to do before. Although she hated it, she was able to do it, and I was encouraged about her future prospects.
The bright spot in our day was when we saw a little boy I’ll call “B.” B had SDR surgery in September, and he is walking independently. I had spoken with B’s mother prior to Sarah Kate’s surgery, and we have seen him each Monday that we have been here. B’s daddy told me that Sarah Kate reminds him a lot of B at the same stage. When I expressed hope that Sarah Kate may walk as well as B, he would say to me with confidence “she will.” Over and over, I was hesitant and cautious in what I said, but every time he came back with a firm “she will.” It reminded me of a time long ago when a friend of mine insisted, over all of my hoping and calculating and worrying, that what I longed for would absolutely come to pass. She said it with a confidence that I didn’t feel, but you know what? She was absolutely right, and when I looked back on it later, I could see that God was speaking to me through her that day.
Now faith is being sure of what we hope for and certain of what we do not see. - Hebrews 11:1
Friday, January 20, 2006
No Doc, But We've Got Our Pillows
Today we started early again - 8:30 - but we didn't have to come back in the afternoon. Sarah Kate's session, though, was extra long; she was there for almost four hours. Part of the time was PT, and the other was OT. One of the big things she is working on in OT is learning how to dress herself - poor balance has always been a problem for her in that area. She worked very hard and shed a few tears, but they were the tears of exhaustion, rather than rage. She is getting much better about asking for what she wants ("I want to take a break"), rather than just crying without words. I asked one of the PT's about her progress today, and she told me that Sarah Kate is a little bit ahead of schedule (Praise the Lord!)
The last few minutes that she was there today, Lisa decided to try to get her to walk with quad canes. Sarah Kate clearly thought that she was finished working and wasn't too keen on doing anything else. She was very frustrated and cried a lot, but she did really well. She has used quad canes a little in the past, but never the "right" way, so she had to completely relearn how to do it. Lisa told me that they will really concentrate on walking with the canes when we come back next week.
We are at home now! We will be here for a couple of days and will go back for one more week of PT in Birmingham before we come home for good next Friday. We will still go to Birmingham once a week for several months and will have PT in Decatur on the other days. I am SO happy to be able to sleep in my own bed with my own pillow. Before we got home, Sarah Kate talked a lot about seeing her kitty, Doc, but he is still "visiting Ma" and won't be back until we are home for good. She mostly forgot about Doc, however, when she got home and reacquainted herself with the Christmas presents she hasn't seen for 2-1/2 weeks!
The LORD is my strength and my shield; my heart trusts in him, and I am helped. - Psalm 28:7a
The last few minutes that she was there today, Lisa decided to try to get her to walk with quad canes. Sarah Kate clearly thought that she was finished working and wasn't too keen on doing anything else. She was very frustrated and cried a lot, but she did really well. She has used quad canes a little in the past, but never the "right" way, so she had to completely relearn how to do it. Lisa told me that they will really concentrate on walking with the canes when we come back next week.
We are at home now! We will be here for a couple of days and will go back for one more week of PT in Birmingham before we come home for good next Friday. We will still go to Birmingham once a week for several months and will have PT in Decatur on the other days. I am SO happy to be able to sleep in my own bed with my own pillow. Before we got home, Sarah Kate talked a lot about seeing her kitty, Doc, but he is still "visiting Ma" and won't be back until we are home for good. She mostly forgot about Doc, however, when she got home and reacquainted herself with the Christmas presents she hasn't seen for 2-1/2 weeks!
The LORD is my strength and my shield; my heart trusts in him, and I am helped. - Psalm 28:7a
Thursday, January 19, 2006
The Weary & The Weak
Our day started early again – physical therapy at 8am. Sarah Kate was slow to wake up, but she did really well once she got going. She was well behaved and worked hard, and I was so proud of her. We came back home for a few hours for lunch and rest, and then went back at 2pm. Things went mostly smoothly, although she did cry a fair amount. The difference today is that she was crying because she was tired (not in a rage), and it was very obvious. We came back to the “parpet” and had a relaxing evening.
As far as her progress goes, she is spending more and more time knee-walking and cruising. Considering how weak her legs were at the beginning of last week when we started (she couldn't even crawl in the beginning), it’s amazing how much progress she has made already. She is about at the level that she was pre-surgery, which is amazing. The therapists are encouraging her to get in and out of the wheelchair by herself and to get around by either cruising holding the wall or knee walking from place to place. She still tends to want to W-sit, but she is getting better and better about sitting the “right” way. The Botox is starting to work a little, too, which is good news because it will help the therapy to progress.
We are going home tomorrow afternoon for a day or two, and I’m thrilled. We need a day or two in our house (and with Scott) to get a break from it all. Sarah Kate definitely needs a break after working so hard every day, and I am incredibly tired myself, although I can’t quite figure out why. Thank you all for your encouraging words. It is through the prayers of our friends and the grace of God that we are able to do this each day.
He gives strength to the weary and increases the power of the weak. - Isaiah 40:29
As far as her progress goes, she is spending more and more time knee-walking and cruising. Considering how weak her legs were at the beginning of last week when we started (she couldn't even crawl in the beginning), it’s amazing how much progress she has made already. She is about at the level that she was pre-surgery, which is amazing. The therapists are encouraging her to get in and out of the wheelchair by herself and to get around by either cruising holding the wall or knee walking from place to place. She still tends to want to W-sit, but she is getting better and better about sitting the “right” way. The Botox is starting to work a little, too, which is good news because it will help the therapy to progress.
We are going home tomorrow afternoon for a day or two, and I’m thrilled. We need a day or two in our house (and with Scott) to get a break from it all. Sarah Kate definitely needs a break after working so hard every day, and I am incredibly tired myself, although I can’t quite figure out why. Thank you all for your encouraging words. It is through the prayers of our friends and the grace of God that we are able to do this each day.
He gives strength to the weary and increases the power of the weak. - Isaiah 40:29
Wednesday, January 18, 2006
Hump Day
It’s Wednesday – Hump Day – the middle of the week. It’s also the day that we got over the “hump” (at least I hope that’s how it’s going to play out). Sarah Kate’s morning PT session went poorly. She was very resistant to doing what she needed to do, and eventually ended up in time out. Although the screaming stopped when she got to time out, the attitude didn’t. I almost had to go to lunch without her, because she wasn’t allowed to leave until she finished what they were doing. It was a trying two hours, despite the fact that I wasn’t even directly involved most of the time. Needless to say, she didn’t get a sucker this morning.
When we came back after lunch, I talked to her before we went inside about being sweet, earning suckers, and doing what Lisa and Carrie tell her to do. The afternoon session went off without a hitch. She even did the exercises (her least favorite part) without a single complaint. Lisa talked to me about her experience with “strong-willed children” a little bit. She said that, in her experience, once these children know what the boundaries are, that they become some of the hardest working children she sees. It is my prayer that our experience today is the beginning of a lot of hard work (and progress!) in the months ahead.
...but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. - Romans 5:3-4
When we came back after lunch, I talked to her before we went inside about being sweet, earning suckers, and doing what Lisa and Carrie tell her to do. The afternoon session went off without a hitch. She even did the exercises (her least favorite part) without a single complaint. Lisa talked to me about her experience with “strong-willed children” a little bit. She said that, in her experience, once these children know what the boundaries are, that they become some of the hardest working children she sees. It is my prayer that our experience today is the beginning of a lot of hard work (and progress!) in the months ahead.
...but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. - Romans 5:3-4
Tuesday, January 17, 2006
She’s a Feisty One
When Sarah Kate was barely one day old, the NICU nurse told us that “she’s a feisty one.” Apparently, in the neonatal realm, feistiness is an intangible, but very real, benefit. The fighters are the ones that thrive. Back in those days, she hated to be messed with. She would scream like a banshee whenever the nurses would take her temperature or change her diaper (quite a sight for a 2-1/2 pound baby), but as soon as they finished she would be fine. Sarah Kate has always been feisty, and today was no exception.
She’s getting tired, despite the fact that she’s sleeping well at night. She slept for thirteen hours Monday night, and would have slept longer, I believe, if I hadn’t had to wake her up for an 8am therapy appointment. I tried to get her to take a little nap after the morning PT, but in spite of the fact that she laid in her bed for two hours, she never did go to sleep. I tried to get some lunch into her before heading to the doctor’s office at 1pm, with no luck. I even called Scott and had him give her something of a mealtime “come to Jesus speech” without success.
The Botox was probably the worst thing we’ve dealt with so far. She got very upset, screaming and crying and gripping both of my hands as tightly as she could. That’s the bad news. The good news is that it only lasted for a minute or two and then it was over (and, true to character, she was over it and fine). The doctor decided to Botox her hamstrings only, with one receiving a bit more than the other. The effects of the Botox won’t really show up for about 5-7 days, but I am anxiously waiting to see how she benefits.
Therapy went well again today. It’s going so well, in fact, that she’s completely “herself” in therapy, which means a little bit of attitude. I was absent part of the time during both therapy sessions today, because having Momma there seems to be somewhat counterproductive at times. I can’t say enough about how great these therapists are in working with kids – I just sit back (or walk out of sight) and let them handle it. Our girl is definitely back to her old self. As far as progress, she is almost back to where she started in terms of functional abilities, and has added some skills and improved on others. Each and every day I can see improvement in her little body.
Sarah Kate fell asleep early again tonight – actually in the car on the way from PT around 5:00. I took off her shoes and braces and put her leg brace on with very little response from her. She went to sleep in her regular clothes, without a bath, and I think that’s perfectly fine. I did tell her goodnight and hear a tiny voice say “I love you, Momma” before I walked out. All of the frustration I had from her earlier attitude melted in that instant, and Scott reminded me tonight that it’s feistiness that’s going to drive her and feistiness is going to push her to that next level. I thanked God that she’s a feisty one.
I can do everything through him who gives me strength. - Philippians 4:13
She’s getting tired, despite the fact that she’s sleeping well at night. She slept for thirteen hours Monday night, and would have slept longer, I believe, if I hadn’t had to wake her up for an 8am therapy appointment. I tried to get her to take a little nap after the morning PT, but in spite of the fact that she laid in her bed for two hours, she never did go to sleep. I tried to get some lunch into her before heading to the doctor’s office at 1pm, with no luck. I even called Scott and had him give her something of a mealtime “come to Jesus speech” without success.
The Botox was probably the worst thing we’ve dealt with so far. She got very upset, screaming and crying and gripping both of my hands as tightly as she could. That’s the bad news. The good news is that it only lasted for a minute or two and then it was over (and, true to character, she was over it and fine). The doctor decided to Botox her hamstrings only, with one receiving a bit more than the other. The effects of the Botox won’t really show up for about 5-7 days, but I am anxiously waiting to see how she benefits.
Therapy went well again today. It’s going so well, in fact, that she’s completely “herself” in therapy, which means a little bit of attitude. I was absent part of the time during both therapy sessions today, because having Momma there seems to be somewhat counterproductive at times. I can’t say enough about how great these therapists are in working with kids – I just sit back (or walk out of sight) and let them handle it. Our girl is definitely back to her old self. As far as progress, she is almost back to where she started in terms of functional abilities, and has added some skills and improved on others. Each and every day I can see improvement in her little body.
Sarah Kate fell asleep early again tonight – actually in the car on the way from PT around 5:00. I took off her shoes and braces and put her leg brace on with very little response from her. She went to sleep in her regular clothes, without a bath, and I think that’s perfectly fine. I did tell her goodnight and hear a tiny voice say “I love you, Momma” before I walked out. All of the frustration I had from her earlier attitude melted in that instant, and Scott reminded me tonight that it’s feistiness that’s going to drive her and feistiness is going to push her to that next level. I thanked God that she’s a feisty one.
I can do everything through him who gives me strength. - Philippians 4:13
Monday, January 16, 2006
Time Out
Whew! We all needed a "time out" today! Scott came down on Saturday (after a rough morning - our friends from home may have heard about the experience of some hunters that morning - Scott was one of said hunters) and was able to stay until this evening because of the MLK holiday. Sarah Kate didn't have any therapy over the weekend - instead, we have a set of exercises that we were to do with her three times per day. We didn't have a lot of luck as far as cooperation goes, but we were told this morning at PT not to worry - that reaction is pretty typical at this stage of the game.
We all three went to PT this morning at 11am, and things went downhill pretty quickly. We saw some whining and some crying and various other dramatic elements, and there were threats of time outs. Scott and I were "sent to time out" first, meaning that we left and went to the waiting area. The escalation would have been for Sarah Kate to get an actual time out, but it wasn't necessary. Although Scott and I were out of sight, we were not out of earshot, and we could hear laughter and chattering about thirty seconds after we left the room.
Tuesday will be a long day for us. PT starts at 8am, she will receive Botox injections at 1pm, and then we'll go back to PT at 3pm. For those of you who are not familiar with the non-cosmetic use of Botox, it is used to weaken the muscles in which it is injected. In her case, her hamstrings are "overriding" her other muscles when she moves, so those other muscles aren't able to take charge like they are supposed to do. The Botox lasts 3-6 months and will open up a window of time for those weaker muscles to gain strength, which will in turn help with her movement and prevent other problems down the road. Serial casting is also still a possibility, although we won't know for sure for a few more days.
Today, Lisa, the lead PT, spoke with us at length about Sarah Kate's future and what we should expect. Although we knew going in that the SDR surgery was not a "silver bullet," things have gone so well up to this point that we've been, in some ways, negatively affected. She told us that corrective surgeries are still highly likely down the road, although most likely only during the years when she reaches the growth spurt of puberty. It's not much fun to think about this condition as a permanent journey of doctors, therapies, and surgeries. I have had to remind myself, though, that the outlook would be much bleaker without this first surgery. SDR is the only preventive option available for kids with cerebral palsy. Everything else is corrective. For now, we must continue to keep our perspective in the here and now. Tomorrow is unknown, and is in God's hands.
Many of you continue to offer assistance, and I appreciate you all so much. At this time, we truly have everything that we need. I ask that you continue to pray for Sarah Kate's healing. God can still work miracles, and I am seeing Him work tiny ones in her every day.
Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. - Matthew 6:34
We all three went to PT this morning at 11am, and things went downhill pretty quickly. We saw some whining and some crying and various other dramatic elements, and there were threats of time outs. Scott and I were "sent to time out" first, meaning that we left and went to the waiting area. The escalation would have been for Sarah Kate to get an actual time out, but it wasn't necessary. Although Scott and I were out of sight, we were not out of earshot, and we could hear laughter and chattering about thirty seconds after we left the room.
Tuesday will be a long day for us. PT starts at 8am, she will receive Botox injections at 1pm, and then we'll go back to PT at 3pm. For those of you who are not familiar with the non-cosmetic use of Botox, it is used to weaken the muscles in which it is injected. In her case, her hamstrings are "overriding" her other muscles when she moves, so those other muscles aren't able to take charge like they are supposed to do. The Botox lasts 3-6 months and will open up a window of time for those weaker muscles to gain strength, which will in turn help with her movement and prevent other problems down the road. Serial casting is also still a possibility, although we won't know for sure for a few more days.
Today, Lisa, the lead PT, spoke with us at length about Sarah Kate's future and what we should expect. Although we knew going in that the SDR surgery was not a "silver bullet," things have gone so well up to this point that we've been, in some ways, negatively affected. She told us that corrective surgeries are still highly likely down the road, although most likely only during the years when she reaches the growth spurt of puberty. It's not much fun to think about this condition as a permanent journey of doctors, therapies, and surgeries. I have had to remind myself, though, that the outlook would be much bleaker without this first surgery. SDR is the only preventive option available for kids with cerebral palsy. Everything else is corrective. For now, we must continue to keep our perspective in the here and now. Tomorrow is unknown, and is in God's hands.
Many of you continue to offer assistance, and I appreciate you all so much. At this time, we truly have everything that we need. I ask that you continue to pray for Sarah Kate's healing. God can still work miracles, and I am seeing Him work tiny ones in her every day.
Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. - Matthew 6:34
Friday, January 13, 2006
Still Speaking
Our day began bright and early with PT at 8:00. Sarah Kate enjoyed a massage of her hamstrings, participated in some stretching exercises, played while sitting on a peanut-shaped exercise ball, stood in the prone stander, and pulled herself across the floor on what is basically a square skateboard. She spent three hours in therapy this morning, but didn't have to come back in the afternoon. We were told to work on the stretching exercises over the weekend (three times a day), and to pick up a pair of wrist weights (to put on her ankles). She is getting a little more comfortable playing in the "right" positions, which helps me because I don't have to police her as much. Although her initial instinct is still to W-sit on the floor, she is gradually beginning to realize that's no longer allowed. Tonight, just before bathtime, she told me she didn't want to do "criss cross applesauce," but would do side-sit instead. Progress!
In terms of real world, practical gains, she really hasn't made any yet. For those who haven't spent a good deal of time with her, that fact may seem a little bit discouraging. To me, however, the improvements have been dramatic and are just the tip of the potential iceberg. One perfect example: before the surgery, if you took your fingers and grabbed hold of her calf, it would be as hard as granite. Now, I can do the same thing and the muscles are soft and pliable. The physical therapy is meant to develop true strength in those muscles - something that she has never had before.
Our "quirky" furnace acted up this evening and I finally felt I had to call in reinforcements. The people from the church who keep this apartment building ministry going came out personally, on a Friday night, to make sure that Sarah Kate and I were comfortable. We had backup space heaters "just in case," but they still took time out of their busy weekend to take care of us. God continues to bless us each and every day.
Please add to your prayers today Sophie, the other little girl who had SDR surgery the same day as Sarah Kate. She has not been sleeping well (and therefore, neither has her mother), and has had some problems with sporadic fever and with her incision. She was not able to do much today at therapy and will have to spend most of the weekend resting. I know that prayers have worked for Sarah Kate - please say them for her friend, Sophie, too.
On a final note - another mom of a special needs child once said to me: "These children that God has given us all have said yes to God long before they came to us and it is through them that we as parents will be perfected as God has so planned." If I am perceived to be of strong faith, it is because I am encouraged by my special daughter.
Have a wonderful, blessed weekend - I'll be back here on Monday.
It will also come to pass that before they call, I will answer; and while they are still speaking, I will hear. - Isaiah 65:24
In terms of real world, practical gains, she really hasn't made any yet. For those who haven't spent a good deal of time with her, that fact may seem a little bit discouraging. To me, however, the improvements have been dramatic and are just the tip of the potential iceberg. One perfect example: before the surgery, if you took your fingers and grabbed hold of her calf, it would be as hard as granite. Now, I can do the same thing and the muscles are soft and pliable. The physical therapy is meant to develop true strength in those muscles - something that she has never had before.
Our "quirky" furnace acted up this evening and I finally felt I had to call in reinforcements. The people from the church who keep this apartment building ministry going came out personally, on a Friday night, to make sure that Sarah Kate and I were comfortable. We had backup space heaters "just in case," but they still took time out of their busy weekend to take care of us. God continues to bless us each and every day.
Please add to your prayers today Sophie, the other little girl who had SDR surgery the same day as Sarah Kate. She has not been sleeping well (and therefore, neither has her mother), and has had some problems with sporadic fever and with her incision. She was not able to do much today at therapy and will have to spend most of the weekend resting. I know that prayers have worked for Sarah Kate - please say them for her friend, Sophie, too.
On a final note - another mom of a special needs child once said to me: "These children that God has given us all have said yes to God long before they came to us and it is through them that we as parents will be perfected as God has so planned." If I am perceived to be of strong faith, it is because I am encouraged by my special daughter.
Have a wonderful, blessed weekend - I'll be back here on Monday.
It will also come to pass that before they call, I will answer; and while they are still speaking, I will hear. - Isaiah 65:24
Thursday, January 12, 2006
The Bon-Bon Queen
Alright, friends...why hasn't anyone ever told me what kind of child I have? She has become quite the little "boss" this week (or was she always that way?) "You sit there....Get me that...Go do this...." I can't quite figure out if the therapists are amused, appalled, or just accepting the 'tude as typical of most kids her age. I really can't say enough about the therapists and how good they are at working with the children.
Sarah Kate is still showing signs of being unstable, but she is improving. Today she used the prone stander again, sat with her legs out in front of her while she played ball (they place animal-shaped sand bags on her legs to hold them stretched out straight), and practiced getting on and off a stool the right way. Previously, she always pushed up both legs at the same time - now she is learning to put one leg up with the foot flat on the floor first. She continues to try to sit with her legs in a "W" position, so we have to continuously work at changing that to a side sit or "criss cross applesauce." She doesn't resist the change anymore, but it does not come naturally to her yet.
Sarah Kate was cast for new braces today - the new ones will be slightly different than the old in that they will have a top strap around the calf that she didn't have before. It is my impression that this choice is a temporary move. I let her pick out her own strap design this time (I gave her five choices to choose from instead of the whole set), and she chose a pink strap with XOXO's and kisses on it. I found out later that the name of the design is "Sarah's Hugs and Kisses." They will have pink padding and a pink top strap.
We have had a nice, slow, relatively easy day today. Sarah Kate is sleeping great, which is really wonderful news and somewhat unusual. We continue to receive emails and cards (Scott tells me that the stack at the house is enormous), and we welcome them all. While I like a phone call, I can read and re-read an email or card over and over again to lift my spirits. I've been told that the reach of the blog is growing every day, and I am so amazed at the interest that people have taken in our story. I've been told that we are "inspiring," which I can't fathom, but I hope that in some small way I am able to encourage someone or make just one person spend a little more time in prayer, or spend a little time more hugging her child. Bless you all! We are watching a miracle develop each day.
'Not by might nor by power, but by my Spirit,' says the LORD Almighty. - Zechariah 4:6
Sarah Kate is still showing signs of being unstable, but she is improving. Today she used the prone stander again, sat with her legs out in front of her while she played ball (they place animal-shaped sand bags on her legs to hold them stretched out straight), and practiced getting on and off a stool the right way. Previously, she always pushed up both legs at the same time - now she is learning to put one leg up with the foot flat on the floor first. She continues to try to sit with her legs in a "W" position, so we have to continuously work at changing that to a side sit or "criss cross applesauce." She doesn't resist the change anymore, but it does not come naturally to her yet.
Sarah Kate was cast for new braces today - the new ones will be slightly different than the old in that they will have a top strap around the calf that she didn't have before. It is my impression that this choice is a temporary move. I let her pick out her own strap design this time (I gave her five choices to choose from instead of the whole set), and she chose a pink strap with XOXO's and kisses on it. I found out later that the name of the design is "Sarah's Hugs and Kisses." They will have pink padding and a pink top strap.
We have had a nice, slow, relatively easy day today. Sarah Kate is sleeping great, which is really wonderful news and somewhat unusual. We continue to receive emails and cards (Scott tells me that the stack at the house is enormous), and we welcome them all. While I like a phone call, I can read and re-read an email or card over and over again to lift my spirits. I've been told that the reach of the blog is growing every day, and I am so amazed at the interest that people have taken in our story. I've been told that we are "inspiring," which I can't fathom, but I hope that in some small way I am able to encourage someone or make just one person spend a little more time in prayer, or spend a little time more hugging her child. Bless you all! We are watching a miracle develop each day.
'Not by might nor by power, but by my Spirit,' says the LORD Almighty. - Zechariah 4:6
Wednesday, January 11, 2006
Double Duty
Today was Sarah Kate's first day of two-a-days in PT. She spent two hours in the morning practicing her sitting, both on a bench and in "criss-cross applesauce" position (I've been asked what that phrase means, and it's what we called "Indian-style" when I was a kid). She whined a little, but for the most part things went pretty smoothly. We didn't have a very long break today between sessions, so I fed her McDonald's in the 4Runner on the way back to the apartment so she could crash as soon as we arrived, which she did.
We went back for another two hours this afternoon, where she practiced standing. Don't get too excited, though, because she was in what is called a prone stander - it holds her in a proper standing position. She played at a table in the standing position for a long time, and she looked really good and strong. I have been asked a lot of questions over the past couple of days about whether or not she will have serial casting, what to expect at the end of these first three weeks, etc. The answer is that we still don't know - because kids that have this surgery are a little tense and apprehensive for the first several days of therapy, they wait to make those decisions/projections until things have settled down. We should know more the end of this week or the beginning of next.
I don't think I realized how tired I was until today. Things were definitely easier when Scott was here, but we made it through today without any problems. She began to wish for home and her kitties a little bit today, but the apartment is still enough of a novelty that it wasn't a big issue. We have gone out to eat the past two nights, which is nice, but it's work just to go to a restaurant these days! I'm looking forward to staying in tomorrow evening and taking it easy. Sarah Kate really does show it when she's tired, but she continues to keep that bright smile on her face all day long. Tomorrow night it will be just us girls, hanging out and watching TV (please, no more "Shrek"!)
But Jesus often withdrew to lonely places and prayed. - Luke 5:16
We went back for another two hours this afternoon, where she practiced standing. Don't get too excited, though, because she was in what is called a prone stander - it holds her in a proper standing position. She played at a table in the standing position for a long time, and she looked really good and strong. I have been asked a lot of questions over the past couple of days about whether or not she will have serial casting, what to expect at the end of these first three weeks, etc. The answer is that we still don't know - because kids that have this surgery are a little tense and apprehensive for the first several days of therapy, they wait to make those decisions/projections until things have settled down. We should know more the end of this week or the beginning of next.
I don't think I realized how tired I was until today. Things were definitely easier when Scott was here, but we made it through today without any problems. She began to wish for home and her kitties a little bit today, but the apartment is still enough of a novelty that it wasn't a big issue. We have gone out to eat the past two nights, which is nice, but it's work just to go to a restaurant these days! I'm looking forward to staying in tomorrow evening and taking it easy. Sarah Kate really does show it when she's tired, but she continues to keep that bright smile on her face all day long. Tomorrow night it will be just us girls, hanging out and watching TV (please, no more "Shrek"!)
But Jesus often withdrew to lonely places and prayed. - Luke 5:16
Tuesday, January 10, 2006
The "Parpet"
Things continue to progress well. We had our first crying jag today, but I have to admit that I don't blame Sarah Kate for this one. She had her bandage removed this morning at PT, and it was not a fun experience (bear in mind that the bandage was bigger across and longer than a checkbook). As soon as it was over, though, she was back to her old self and wanted to stay and play some more. The therapists here are so wonderful, and they spend a lot of their time smiling and laughing at the things she says and does. I'm not sure if they are that way with all of the children, or just with her, but it does a momma's heart good to know she's having a good time.
We went back to clinic this afternoon to see the neurosurgeon. He is pleased with her progress and said he'll see her back in a year (yes, a year!) He told us it was up to us from this point forward. Thankfully, I had my camera in my purse and got a quick shot of the two of them together. Hopefully she'll walk into the clinic next January on her own.
God has taken care of every need that we have had, even those we hadn't personally brought to his attention. Today was Scott's last day with us, and I've been a little apprehensive about him leaving. Things are going well, and I felt like I could handle most things, but our apartment ("parpet," as Sarah Kate calls it) is upstairs and I've been a little nervous about having to wrangle the wheelchair up three flights of stairs. It's a great wheelchair (many thanks to my friend, Amanda, for letting us use it!), but it's very heavy. Many of you know the problems I've had with my back over the past year, and I have to tell you that I was really concerned that those stairs were going to do me in. Well, today when we showed up for therapy, they commented on how we had this cushion behind Sarah Kate in the chair, because it's a little too deep for her short legs. They told us that they had just happened to have someone turn in a loaner stroller-type wheelchair that might fit better. Guess what? It was perfect! Now we've got one wheelchair for the "parpet", and one for the car when we go to therapy. What a relief!
Be still and know that I am God. - Psalm 46:10
We went back to clinic this afternoon to see the neurosurgeon. He is pleased with her progress and said he'll see her back in a year (yes, a year!) He told us it was up to us from this point forward. Thankfully, I had my camera in my purse and got a quick shot of the two of them together. Hopefully she'll walk into the clinic next January on her own.
God has taken care of every need that we have had, even those we hadn't personally brought to his attention. Today was Scott's last day with us, and I've been a little apprehensive about him leaving. Things are going well, and I felt like I could handle most things, but our apartment ("parpet," as Sarah Kate calls it) is upstairs and I've been a little nervous about having to wrangle the wheelchair up three flights of stairs. It's a great wheelchair (many thanks to my friend, Amanda, for letting us use it!), but it's very heavy. Many of you know the problems I've had with my back over the past year, and I have to tell you that I was really concerned that those stairs were going to do me in. Well, today when we showed up for therapy, they commented on how we had this cushion behind Sarah Kate in the chair, because it's a little too deep for her short legs. They told us that they had just happened to have someone turn in a loaner stroller-type wheelchair that might fit better. Guess what? It was perfect! Now we've got one wheelchair for the "parpet", and one for the car when we go to therapy. What a relief!
Be still and know that I am God. - Psalm 46:10
Monday, January 09, 2006
Criss Cross Applesauce
It's hard to resist the feeling that I'm waiting for the other shoe to drop. Things have gone so well that I can hardly take it in. We started the day with an incremental progression into sitting upright. Although Sarah Kate whined a little each time we moved her, once she was settled in she was fine. At lunchtime, we moved her completely upright into her wheelchair and she ate lunch in it. She did look a little pale briefly, but once she got a little food in her she perked up. We got her to take a nap after lunch in preparation for this afternoon's therapy session.
Therapy went GREAT this afternoon. She started with about 30 minutes of heat on her legs, and moved on to rolling herself from front to back. It was a little unsettling for her, which is a common side effect of having sensory nerves cut. She has lost some spatial reference, although her brain will adapt and "rewire" the remaining sensory nerves. After that, the PT, Lisa, worked with her on sitting with her legs out to each side and also in a ring sit ("criss cross applesauce") position. She played in a sitting position for a while, and even resisted stopping to rest. She didn't cry at all, and whined very little throughout the whole two hour session. Lisa was very happy with her progress thus far.
While watching Sarah Kate playing in the ring sit position, I was almost speechless. She has never been able to comfortably sit in that position before, and it was incredible to watch. She looked so "grown up." Although today was only the first day, I am already so incredibly amazed by her progress.
I know I may sound like a broken record, but I am convinced that prayer works. So many of you have been praying and lifting us up, and I am certain that is why things have been going so smoothly. I have been taking photos throughout the experience (of course!) and I'll try to share them as soon as I figure out an easy way to do so. At the very minimum, I will create an album at the end of this part of our journey that documents all of the blessings that God has given us.
Today's verse from another friend:
Call to me and I will answer you and tell you great and unsearchable things you do not know. - Jeremiah 33:3
Therapy went GREAT this afternoon. She started with about 30 minutes of heat on her legs, and moved on to rolling herself from front to back. It was a little unsettling for her, which is a common side effect of having sensory nerves cut. She has lost some spatial reference, although her brain will adapt and "rewire" the remaining sensory nerves. After that, the PT, Lisa, worked with her on sitting with her legs out to each side and also in a ring sit ("criss cross applesauce") position. She played in a sitting position for a while, and even resisted stopping to rest. She didn't cry at all, and whined very little throughout the whole two hour session. Lisa was very happy with her progress thus far.
While watching Sarah Kate playing in the ring sit position, I was almost speechless. She has never been able to comfortably sit in that position before, and it was incredible to watch. She looked so "grown up." Although today was only the first day, I am already so incredibly amazed by her progress.
I know I may sound like a broken record, but I am convinced that prayer works. So many of you have been praying and lifting us up, and I am certain that is why things have been going so smoothly. I have been taking photos throughout the experience (of course!) and I'll try to share them as soon as I figure out an easy way to do so. At the very minimum, I will create an album at the end of this part of our journey that documents all of the blessings that God has given us.
Today's verse from another friend:
Call to me and I will answer you and tell you great and unsearchable things you do not know. - Jeremiah 33:3
Sunday, January 08, 2006
Sunday - PT's Eve
We've had a very quiet day today. "Shrek" has been the character of choice for viewing (over and over and over again...), and we've pretty much just relaxed and enjoyed the nice weather. Sarah Kate is getting a little too accustomed to being waited on hand and foot, as she made a few requests that ended in phrases such as "right NOW." We're backing way off of the immediate responses and blanket agreements so that she doesn't get too spoiled. We're likely to have some wailing and gnashing of teeth tonight when we try to comb out the enormous rat's nest she's developed in her hair from laying on her back so much.
Lisa, the PT, came by this afternoon and she was very pleased with Sarah Kate's range of motion. She gave us instructions for helping her to start sitting up in the morning. PT will begin tomorrow and will be twice daily. Although we are looking forward to seeing how she progresses, Lisa warned us that this first week is going to be particularly rough on her (how many adults would want to go from doing nothing to exercising four hours a day overnight?)
Prayer works! Scott and I are fully in agreement that the prayers said for us over these past 5+ days have benefitted us tremendously. Things have gone incredibly smoothly so far, and we humbly ask for your continued prayers as we start this next phase of the journey.
Ask, and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks, finds; and to him who knocks, the door will be opened. - Matthew 7:7
Lisa, the PT, came by this afternoon and she was very pleased with Sarah Kate's range of motion. She gave us instructions for helping her to start sitting up in the morning. PT will begin tomorrow and will be twice daily. Although we are looking forward to seeing how she progresses, Lisa warned us that this first week is going to be particularly rough on her (how many adults would want to go from doing nothing to exercising four hours a day overnight?)
Prayer works! Scott and I are fully in agreement that the prayers said for us over these past 5+ days have benefitted us tremendously. Things have gone incredibly smoothly so far, and we humbly ask for your continued prayers as we start this next phase of the journey.
Ask, and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks, finds; and to him who knocks, the door will be opened. - Matthew 7:7
Saturday, January 07, 2006
"Home" At Last
We are so thrilled to be out of the hospital and into our new home for the next few weeks! It's an older apartment building, but nicely furnished (particularly since it's free!) We have a quirky little through the wall furnace for heat ("quirky" = at times it requires some vigorous banging with a wooden spoon to get going good). We have two bedrooms; one has a double bed and the other has two twin beds. My mom brought some food to us (Paula Deen chicken pot pie - yum!), and Scott's mom brought some VHS movies and a bed rail for Sarah Kate.
Sarah Kate is doing well and really enjoying the fact that we are waiting on her hand and foot and she gets to watch whatever movie she wants whenever she wants to watch it. In fact, she told us more than a couple of times this morning that she wanted to stay at the hospital. Although her room was very nice and roomy as hospital rooms go, a vinyl trundle is not such a great bed for mom. I actually spent part of Friday night sleeping at the end of her bed.
Sarah Kate is still required to lie straight, though not necessarily on her back. She just can't twist or bend from the waist at all. The therapists will come on Monday morning to assist with sitting her up for the first time. Her therapy will begin on Monday and will be twice a day. We have a schedule of the first two weeks of therapy, but there doesn't seem to be much of a pattern of when, where, and with whom. She hasn't indicated that she is in any pain at all, and she is only taking OTC Tylenol and Motrin for pain.
I've received so many wonderful emails in the past few days and I hope to get a chance to respond now that things are settling down. I won't post people's full messages here, because they may prefer I keep them to myself, but I will share a few tidbits. Today I received two things I want to share, a hymn and a verse that touched me.
Turn your eyes upon Jesus
Look full in his wonderful face
And the things of earth will grow strangely dim
In the light of His glory and grace.
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." - Jeremiah 29:11
Sarah Kate is doing well and really enjoying the fact that we are waiting on her hand and foot and she gets to watch whatever movie she wants whenever she wants to watch it. In fact, she told us more than a couple of times this morning that she wanted to stay at the hospital. Although her room was very nice and roomy as hospital rooms go, a vinyl trundle is not such a great bed for mom. I actually spent part of Friday night sleeping at the end of her bed.
Sarah Kate is still required to lie straight, though not necessarily on her back. She just can't twist or bend from the waist at all. The therapists will come on Monday morning to assist with sitting her up for the first time. Her therapy will begin on Monday and will be twice a day. We have a schedule of the first two weeks of therapy, but there doesn't seem to be much of a pattern of when, where, and with whom. She hasn't indicated that she is in any pain at all, and she is only taking OTC Tylenol and Motrin for pain.
I've received so many wonderful emails in the past few days and I hope to get a chance to respond now that things are settling down. I won't post people's full messages here, because they may prefer I keep them to myself, but I will share a few tidbits. Today I received two things I want to share, a hymn and a verse that touched me.
Turn your eyes upon Jesus
Look full in his wonderful face
And the things of earth will grow strangely dim
In the light of His glory and grace.
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." - Jeremiah 29:11
Friday, January 06, 2006
Day Two
Thursday morning started with an early (5am) visit. We only were allowed an hour, and then we couldn't return until 10am. Scott decided to use the 4-hour break to drive to Decatur to get some VHS Disney movies she had requested (and before anyone asks, no, he couldn't just go to Wal-Mart, because they are all limited release and currently not available - that's a great daddy for you!)
Dr. Oakes came by around 9:30 and said that Sarah Kate was doing well and that he had ordered that she be released from PICU to a regular room. They warned us, however, that the hospital was full and it would probably be several hours before a room was available. Well, several hours actually became not at all. Sarah Kate had to spend another night in PICU because there “was no room at the inn.” Mom (that’s me, of course) just about came unglued by day’s end, but what could we do?
Sarah Kate is doing well. She doesn’t seem to be in pain, although she does know she isn’t able to move around (for those of you who asked “how do you keep a 3 year old laying on her back?” the answer is that she does it herself without prodding). When she has needed to be moved for various reasons, she has gotten a little upset, but it seems to be because she is afraid she is going to hurt, rather than actual pain. She did get upset a couple of times when we had to leave her (courtesy of her having to remain in PICU), but other than that she seems fine.
We are on our way to the hospital in just a few minutes, and we hope to get into a room as soon as possible so we don’t have to keep showing up and then leaving her. Our best guess about when she will be released is tomorrow (Saturday), but we aren’t sure about that. The big question mark is when she will be allowed to sit up, which we’ve been told is anywhere between Saturday and Monday.
I am ready to give my baby a big hug!!!!
Some of my friends have emailed Bible verses to me in the past couple of days, and I'm going to publish those here for all to contemplate.
Now unto him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us. - Ephesians 3:20
Many, O Lord my God, are the wonders you have done. The things you planned for us no one can recount to you; were I to speak and tell of them, they would be too many to declare. - Psalm 40:5
Dr. Oakes came by around 9:30 and said that Sarah Kate was doing well and that he had ordered that she be released from PICU to a regular room. They warned us, however, that the hospital was full and it would probably be several hours before a room was available. Well, several hours actually became not at all. Sarah Kate had to spend another night in PICU because there “was no room at the inn.” Mom (that’s me, of course) just about came unglued by day’s end, but what could we do?
Sarah Kate is doing well. She doesn’t seem to be in pain, although she does know she isn’t able to move around (for those of you who asked “how do you keep a 3 year old laying on her back?” the answer is that she does it herself without prodding). When she has needed to be moved for various reasons, she has gotten a little upset, but it seems to be because she is afraid she is going to hurt, rather than actual pain. She did get upset a couple of times when we had to leave her (courtesy of her having to remain in PICU), but other than that she seems fine.
We are on our way to the hospital in just a few minutes, and we hope to get into a room as soon as possible so we don’t have to keep showing up and then leaving her. Our best guess about when she will be released is tomorrow (Saturday), but we aren’t sure about that. The big question mark is when she will be allowed to sit up, which we’ve been told is anywhere between Saturday and Monday.
I am ready to give my baby a big hug!!!!
Some of my friends have emailed Bible verses to me in the past couple of days, and I'm going to publish those here for all to contemplate.
Now unto him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us. - Ephesians 3:20
Many, O Lord my God, are the wonders you have done. The things you planned for us no one can recount to you; were I to speak and tell of them, they would be too many to declare. - Psalm 40:5
Thursday, January 05, 2006
The Morning After
We stayed at the hospital until 10:00 last night and then came back to the apartment to try to get some sleep. PICU does have visiting hours from midnight to 2am, but we decided to skip those in hopes that Sarah Kate would get a little sleep. Scott is a morning person and I am a night person, so we basically decided that it would be easier for him to get me up than for me to keep him up :-) Although I didn't sleep a lot, it was so nice to be able to go somewhere private - many of the families spent the night in the PICU waiting room.
When we left her, she was watching "Mulan" and was about to take some Motrin. Her last epidural morphine dose had been in the OR, and we were hopeful that she would be able to manage without it so that she can be released from PICU. She appeared to be a little uncomfortable at times, but didn't seem to be in a lot of pain. She did have a little trouble keeping the juice they gave her down, but they said that it was probably a little early for her to be eating since she'd had a breathing tube for her surgery.
We arrived at PICU at 5am this morning. She was awake and alert and talked to us a good bit more. She has been requesting to watch "Sleeping Beauty" since last night, which is unfortunate because neither us nor the PICU has a copy! She asked Scott to go home and get her some videos, so he is on his way home at this minute to bring back Snow White, Cinderella, Beauty and the Beast, and more. We had to leave at 6am and the next visiting hours don't start until 10am, so he will have plenty of time to go home and come back. She told him "it's probably a long way, okay?"
When we left her, she was watching "Mulan" and was about to take some Motrin. Her last epidural morphine dose had been in the OR, and we were hopeful that she would be able to manage without it so that she can be released from PICU. She appeared to be a little uncomfortable at times, but didn't seem to be in a lot of pain. She did have a little trouble keeping the juice they gave her down, but they said that it was probably a little early for her to be eating since she'd had a breathing tube for her surgery.
We arrived at PICU at 5am this morning. She was awake and alert and talked to us a good bit more. She has been requesting to watch "Sleeping Beauty" since last night, which is unfortunate because neither us nor the PICU has a copy! She asked Scott to go home and get her some videos, so he is on his way home at this minute to bring back Snow White, Cinderella, Beauty and the Beast, and more. We had to leave at 6am and the next visiting hours don't start until 10am, so he will have plenty of time to go home and come back. She told him "it's probably a long way, okay?"
Wednesday, January 04, 2006
The Big Day
We arrived at 8:30 and were greeted by 4 out of Sarah Kate's 8 grandparents (the other four are coming tomorrow), an aunt, and a staff member from our church. Later, we would be joined by my mom and stepdad's pastor and a close friend of Andi's. We had quite the cheering section!
While we were waiting, I heard someone call my name. When I turned to see who it was, it was a lady named Lisa that I met last spring from Huntsville. She had seen the WAFF 48 News health segment that featured Sarah Kate and then recognized us at the March of Dimes WalkAmerica (Sarah Kate is the division ambassador). We talked at length that day, because she has a daughter, Sophie, who is just a little younger than Sarah Kate with a similar condition. I saw her again over the summer, but I didn't have her number or know how to get in touch with her. As it turned out, her daughter was having the same surgery as Sarah Kate at that moment, and not only that, but she and her family are staying in the same apartment building as us! I was talking with her when she got the news that Sophie had done well with the surgery, and I can't tell you how much better I felt at that point, even though Sarah Kate hadn't even been taken back yet. The LORD has not only provided us with a place to stay and a peace in our hearts, but he also has given Sarah Kate and I each a companion with which to share this experience! Both of the daddies will have to return to work in just a few days, and then just us mommies and girls will be here.
Because Sarah Kate's was the second SDR case of the day, it was awhile before her surgery actually started. After some preliminary activities, they finally took her back around 10:30 for "giggle juice." She was wheeled back to the OR at 11:15, and was even able to take her I Love Jesus lamby with her. We received a call that the doctor had started around 12:15, and the surgery lasted for about two hours. The physical therapist came out first and was very encouraging. She did tell us that they may decide to do serial casting on her hamstrings next week just to make really sure that they are stretched appropriately as we head into the upcoming therapy. We had not expected to hear that, but that's just a part of this whole process.
Scott and I were allowed to go back and see Sarah Kate in recovery after 3 (she had her lamby right beside her when we arrived), and we stayed with her until 6pm with the exception of a brief period of time when they moved her to the PICU. Her face was a little bit puffy, but not bad, and she was having a tough time talking to us, but she seemed to be doing really well. You could tell that she was uncomfortable at times, but she didn't cry or get upset at all. She is such a tough cookie! We went back to visit from 8pm-10pm and then headed for the apartment.
One of my friends called me today and shared the verse I've included below. I felt it was appropriate to include here and I thank her, and all of our friends, for their prayers and support.
He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young. - Isaiah 40:11
While we were waiting, I heard someone call my name. When I turned to see who it was, it was a lady named Lisa that I met last spring from Huntsville. She had seen the WAFF 48 News health segment that featured Sarah Kate and then recognized us at the March of Dimes WalkAmerica (Sarah Kate is the division ambassador). We talked at length that day, because she has a daughter, Sophie, who is just a little younger than Sarah Kate with a similar condition. I saw her again over the summer, but I didn't have her number or know how to get in touch with her. As it turned out, her daughter was having the same surgery as Sarah Kate at that moment, and not only that, but she and her family are staying in the same apartment building as us! I was talking with her when she got the news that Sophie had done well with the surgery, and I can't tell you how much better I felt at that point, even though Sarah Kate hadn't even been taken back yet. The LORD has not only provided us with a place to stay and a peace in our hearts, but he also has given Sarah Kate and I each a companion with which to share this experience! Both of the daddies will have to return to work in just a few days, and then just us mommies and girls will be here.
Because Sarah Kate's was the second SDR case of the day, it was awhile before her surgery actually started. After some preliminary activities, they finally took her back around 10:30 for "giggle juice." She was wheeled back to the OR at 11:15, and was even able to take her I Love Jesus lamby with her. We received a call that the doctor had started around 12:15, and the surgery lasted for about two hours. The physical therapist came out first and was very encouraging. She did tell us that they may decide to do serial casting on her hamstrings next week just to make really sure that they are stretched appropriately as we head into the upcoming therapy. We had not expected to hear that, but that's just a part of this whole process.
Scott and I were allowed to go back and see Sarah Kate in recovery after 3 (she had her lamby right beside her when we arrived), and we stayed with her until 6pm with the exception of a brief period of time when they moved her to the PICU. Her face was a little bit puffy, but not bad, and she was having a tough time talking to us, but she seemed to be doing really well. You could tell that she was uncomfortable at times, but she didn't cry or get upset at all. She is such a tough cookie! We went back to visit from 8pm-10pm and then headed for the apartment.
One of my friends called me today and shared the verse I've included below. I felt it was appropriate to include here and I thank her, and all of our friends, for their prayers and support.
He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young. - Isaiah 40:11
Tuesday, January 03, 2006
One More Day
Today's post will be brief (I hope) because of all of the myriad of tasks on my plate today to prepare for our trip to Birmingham. Just a short while ago, several women from the church were here praying for our family, the doctors, and the nurses. Three other women that were unable to come to the house also let me know that they would be praying at the same time. We've received a number of calls and emails in the past few days, and I can't even begin to guess how many prayer lists Sarah Kate is on right now. Scott's dear friend, Kevin, called on Monday night and told us that his wife, Paula, had hardly slept the night before and spent most of the night praying for us. It is so humbling to have that kind of caring directed toward me and my family.
We found out last night that we will be able to get into the apartment tomorrow! I'm so grateful, although it will be nearly impossible for me to make myself leave the hospital, even for just a little while. We are so thankful to have a place to stay - the Lord has provided!
And the prayer offered in faith will make the sick person well; the Lord will raise him up. If he has sinned, he will be forgiven. - James 5:15
We found out last night that we will be able to get into the apartment tomorrow! I'm so grateful, although it will be nearly impossible for me to make myself leave the hospital, even for just a little while. We are so thankful to have a place to stay - the Lord has provided!
And the prayer offered in faith will make the sick person well; the Lord will raise him up. If he has sinned, he will be forgiven. - James 5:15
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