Fall

What a year we have had! Last November, Sarah Kate was using a walker and we were preparing for a long year ahead with the surgery and physical therapy. Now, she is walking independently, and is even taking dance lessons (it's what they call pre-ballet, and she's not exactly preparing for a career in choreography). We are officially out of the woods financially with respect to the therapy, and have been looking forward to the future. God has blessed us.

Ironically, the future has changed. Scott has accepted another job and we will be moving "home" as soon as our house sells. It's been a difficult decision for us, but one that we believe God has led us to make. Every concern that we have had has been resolved and there is nothing holding us back now. In addition, if we have learned anything this year, it is that it will be nice to have help with Sarah Kate. Who knows? Maybe I will even go back to work sometime down the line. Whatever happens, we are trusting the Lord.

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

Time Out, Finally

We're at the end of the line. Sort of. The reality is that cerebral palsy has no real end. We are, however, near the end of this particular journey. Sarah Kate finished the 3-week intensive program today, and will drop down now to only two days per week of physical therapy. Thankfully, both days will be in Decatur most of the time; we will only have to return to Birmingham every six weeks or so.

I was not there this morning because of a prior commitment (hosting a scrapbooking retreat for my customers on beautiful Smith Lake!), so Papa and Bebe took Sarah Kate to therapy and Scott met her there. Thursday had been rather difficult - Sarah Kate was sick of going and expressed her displeasure by whining, pouting, crying, and even hitting Carrie (her proclaimed favorite therapist) in the face. She went to time out, and I went to McDonald's for a cinnamon roll. Not long after returning, I headed out again for Barnes & Noble. She did ultimately come around and work. I expected Friday to be better, because I had given her a little pep talk about Daddy coming and it being the last day.

Friday wasn't better. Sarah Kate was no better for Scott than she had been for me. Lisa ("bad cop") was also back, and even her presence didn't help. A good bit of the day was spent doing an end-of-session evaluation. Sarah Kate was expected to repeat certain tasks and exercises from the first day to see what changes had taken place. The improvements were: the ability to dress and undress herself, standing from the floor without support, walking further during a timed six minute walk, and walking in SMO's instead of AFO's. Her gait has also visibly improved, though it's still a long way from typical, and she can walk up and down 5-6 steps with only one hand held.

From this point forward, the main aim of the physical therapy is keep her on track and to prevent bad habits from forming. We're heading into the summer season, and I've already gotten my Point Mallard pass (Sarah Kate is still young enough to get in free). Sarah Kate was given a generous gift this week of a new wooden playset, which Scott is working to assemble this weekend. The motion of swinging is an excellent core strengthening exercise, and the ladder and "rock wall" steps are also good physical training for her. Lisa recommended that we get her a tricycle, as well, which we will probably do in the next few days (tricycles are fairly inexpensive).

As far as our insurance is concerned, we believe we've reached the end of the line in terms of what Blue Cross Blue Shield is going to pay. A meeting is scheduled for May 26 to discuss the issue, but the meeting is about rhizotomy cases in general, not Sarah Kate's case in particular. After that meeting, we should know what the "final word" is and can begin negotiating our portion. Whatever the outcome, we have done the best for our daughter and know that we would make the same choices again.

Thank you all for your prayers and words of encouragement. It's been a tough road, and I'm very happy to be nearing the end of it. Continue to remember us, though, as we move into "regular" life. Ordinary challenges can be the most challenging of all.

"Not by might, nor by power, but by my spirit, declares the Lord." - Zechariah 4:6

12 Days and Counting

Sorry for the lack of a blog post last week...it was just too much to manage. My cousin died of cancer last weekend (he was 26) and Papa & Bebe went to Orange Beach for a few days. Sarah Kate and I each got a cold-like something, followed closely by a stomach bug, and things just didn't go well. She still didn't complain and worked as hard as she could at therapy, but she was definitely not herself. She perked up on Friday, just before we went home for the weekend (how did she know?)

I have to confess to a bit of disappointment over the last week. Although Sarah Kate has done fine, her progress just wasn't what I had expected. Maybe I had unrealistic expectations, but I don't think so. Scott agreed when he saw her this weekend - there were improvements, but only minor ones as far as we could see. The biggest improvement we could see was in her stamina - her quantity of walking has increased tremendously, although the quality has improved only slightly.

This week started off a little better, and I am "up" again. Lisa made a new, homemade, pair of braces for her to try this week. They are similar to the old ones (called AFO's - ankle foot orthotic), but are much shorter and have a notch cut out of the back where the Achilles tendon is located (called SMO's - supramalleolar orthotic). The purpose is to allow her foot to flex more while still supporting her weak ankles. The intent was for Sarah Kate to try the SMO's this week in therapy and then make a decision whether or not to switch. The difference was immediate, though, and Lisa said she should definitely switch to an SMO. Sarah Kate's gait was more typical and fluid - more bend in the knee and less of the halting stiff-legged walk. Late yesterday afternoon, we went to visit a friend of mind, Suzanne, who lives near Papa & Bebe. I turned around at one point to see Sarah Kate walking across the yard - she has never been able to walk easily in grass before! Flat, solid surfaces have been the only places she could manage unassisted. The yard was relatively flat, but very uneven and somewhat soggy from all the rain. Small victories!

Today was a little tougher. Sarah Kate doesn't quite understand the concept of "three weeks," so she doesn't realize how close she is to being finished with this leg of her journey. The first week was kind of fun for her, because she was getting to see Lisa and Carrie again and play in a new place. Last week the novelty had begun to wear off a little, and now you can see in her face that she is wondering when it's ever going to end. She asks every day now when we leave if we can go home and see Daddy. Tomorrow we will get to see Sophie for a few minutes, and I hope to have good news on that front, as well.

Thank you again for all of your prayers. We are beginning to see the proverbial light at the end of the tunnel!

Come to me, all you who are weary and burdened, and I will give you rest. - Matthew 11:28

Uno, Dos, Tres, Cuatro

Sarah Kate has just finished Day 4 of UEU, and she is doing great! No battle of the wills has been necessary, and for that I am truly thankful. She has been extremely cooperative and has worked very hard every day. I don't think I could work out for 3-4 hours at a stretch every day, but she has done it without complaining a bit. I have let her choose each day whatever she wanted to eat for lunch (I know they say food shouldn't be used as a reward, but we've gotta eat....) and she has requested Mexican food every day. I did manage to sway her toward Taco Bell this afternoon because we are on the verge of being on a first-name basis with the folks at Habanero's.

We hit a little snag earlier in the week. Sarah Kate had a slight fever Tuesday night, and although she seemed alright the next morning, about midway through UEU on Wednesday she felt a little bit warm. We were just down the hall from the after hours clinic so we had them check her temperature, which was 101.1. I couldn't believe she had been working so hard even with a fever. We left early and I brought her back here to rest. She took some Motrin and slept for about 3 hours in the afternoon and seems to be much better today.

I could see a difference today in Sarah Kate's stride after being in the Adeli suit. It is longer and more typical-looking. She is also doing a better job of walking with her arms down, although she still has to be reminded to do so. A few other things they are working on during these 3 weeks are: learning to dress herself, learning to jump, and stepping on/off a curb without support.

We are enjoying it here at Papa and Bebe's house. I haven't had to do a thing since I've been here (Bebe even did our laundry!) and Sarah Kate has enjoyed being able to look out in the morning and see the horses. Papa has a brand new colt that she is quite enthralled with, and she also likes riding to the barn and back in Papa's golf cart. The drive in to UEU is only about 30 minutes, most of it on the interstate, so that's not too bad.

Sarah Kate will be working with Lisa one-on-one on Friday morning, and she jokingly told Sarah Kate to "get ready" when we left yesterday. After that we will be going home to Decatur until Sunday afternoon.

Have a wonderful day!

The LORD has done great things for us, and we are filled with joy. - Psalm 126:3

Back in the Saddle Again

Monday marked our return to Birmingham for three weeks of intensive physical therapy. We weren't able to get the apartment again, so this time we are staying with my dad and stepmom ("Papa & Bebe"). Their home is about 30 minutes to the Children's South therapy office, but that's alright because it's not crucial that we be close like it was following the surgery when Sarah Kate was unable to ride for more than a few minutes in the car. Although it is a longer drive in each morning, Sarah Kate only goes once per day (instead of twice like before), and it's nice to have some help with her (plus I don't have to clean or cook!) Papa & Bebe have horses, a dog, and multiple felines, so Sarah Kate is going to enjoy it here. We will be coming home on Fridays and returning on Sundays.

Yesterday was her first day of UEU ("Universal Exercise Unit"), as they call it, but the first day was primarily an evaluation of her progress and any "body issues" she has, such as joints that aren't positioned just right. They also studied her flexibility and watched her do things like walk, sit, etc. The evaluation took about three hours total and she began working today.

We arrived at 8:30 this morning and her session started off with heat and massage. After that, she did some exercises (disguised as play) to help strengthen her trunk, and did a "6-minute walk" where they got her to walk down and back in a long hallway for 15 minutes (just kidding!) and kept track of how many times she fell down (or didn't). Following the 6-minute walk, she did some exercises using pulleys with sandbag weights. She got a chance to have snack (cheese, peanut butter crackers, peanuts, and apple juice), and then was fitted into the Adeli suit to work some more. She finished up about 1:00 and then we went for some well-deserved lunch - she requested Mexican food!

The Adeli suit (pronounced like where you'd go to get a sandwich) is a broad-shouldered vest, knee pads, and shorts set with a series of hooks and velcro straps, and a pair of Vans tennis shoes modified to work with the suit. The therapists take a lot of little bungees and connect them to various points on the suit (I can't begin to estimate how many options exist) and onto the shoes. The purpose is to hold her body as close to perfect alignment as possible - hips, ankles, knees, thighs, back, and so on. She then does regular therapy activities in the suit, and the intent is to train the body (including the brain) to do things the "right" way. If you'd like to read more about it, follow this link: http://www.adeli-suit.com/English/adeli_suite.htm

We got some news on the insurance front! Scott heard from our case manager at BCBS today and they have worked out an agreement with Children's Health System to cover the 15 UEU visits at a reduced amount. The agreement is instead of, not in addition to, the 30 visits with the cap that we were given last week. What that means for us is that instead of buying a loaded Toyota Camry, we only owe half of one :-) Although that sum is still significant, it's much more manageable than what we were looking at just a few days ago. It's not coming as quickly as we would like sometimes, but God is providing for us. Thank you to everyone who has prayed for us and continues to pray for us.

I'll do my best to blog more frequently during the next three weeks (I'm not cooking or cleaning, so I should have time, right?) I appreciate all of you who have faithfully read the blog and encouraged me throughout this journey. I am constantly surprised at the messages that I receive and to hear exactly who is reading the blog. God bless you all!

Be joyful in hope, patient in affliction, faithful in prayer. - Romans 12:12

Good News - Bad News

After having such a great week two weeks ago, things have kind of gone downhill. Sarah Kate has not done as well walking over the past week, and even reverted to using her duck cane a few times. Her appetite increased a good bit toward the end of the week and she seems to be sleeping more, so we are hopeful that this setback is temporary and related to a growth spurt. A simplified explanation of why this would be problematic is that when children have growth spurts, the bones grow quicker than the muscles, and the muscles grow and stretch to catch up. Children with cerebral palsy have muscles that are already tight, and they aren't able to keep up. Before Sarah Kate's surgery, it was always visibly obvious when she was growing; her right leg was tighter than her left, and the right foot would begin to turn out. As the muscles "caught up," the foot would come back to normal.

We got what we thought was great news about our insurance several days ago, but it has turned out to only be modestly good news. BCBS authorized 30 additional therapy visits for Sarah Kate, but they placed a cap on the total amount of only $3000. We are very disappointed in their response, which is far short of what will be necessary. Sarah Kate starts the intensive therapy program on Monday (the 24th), and we had hoped to be able to know going in that at least this portion of her therapy would be covered. BCBS has moved incredibly slow throughout this process (it took over a month for them to authorize this small amount), so we know that at this point we're just going to have to take that leap of faith and pray that God will provide a way.

Please continue to pray for us.

I have set the LORD always before me. Because he is at my right hand, I will not be shaken. - Psalm 16:8

Sarah Kate Can Walk!

Alright, I know that the title for this blog may not seem like much of a revelation. Many of you have already seen Sarah Kate take independent steps, and maybe even weeks ago. What has been lacking, though, is Sarah Kate's desire to walk anywhere, anytime, under most any circumstances - in short, for it to be natural to her. We've turned a corner this week, though, and I'm so happy to be able to say it. Sarah Kate can walk. She turns corners, maneuvers around the toys, and doesn't try to conserve steps. She hasn't used a cane in several days. Although she falls a lot (and still looks a little like Frankenstein) and does a lot of moving between things instead of typical starting and stopping, she doesn't hesitate anymore to walk. I can not put into words what an achievement it is.

Some of you have shared your thoughts and said prayers regarding our insurance situation. We have not given up and are still pushing - squeaky wheel and all that jazz. Children's Hospital has our account temporarily on hold (doesn't mean the charges aren't accumulating - just that they aren't expecting payment right away) until this thing is settled, and the local PT is being very good to work with us, as well. Don't stop praying for us! The biggest financial hurdle we have is the upcoming intensive therapy program - it's very expensive (almost half of that "loaded Toyota Camry" I mentioned before), but is supposed to be the equivalent of months of PT. It is all worth it, of course!

On a personal and vulnerable level, I'm asking for prayers, as well. This whole process is incredibly rewarding, but also terribly stressful, and it is taking a toll on me. I always say that I can stand anything that I can see the end of, but the end here still seems far, far away.

And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. - 1 Peter 5:10

Urgent Prayers Needed Today

I've made a conscious effort to try to come up with a witty title for each of my blog posts, but today I just don't have the time or energy for it. I haven't posted in a couple of weeks - time is just flying by and I don't know where it's going.

First things first - Sarah Kate is still making progress. She is only using one of her duck canes now, and doesn't use them much at all around the house. She still has a little bit of the Frankenstein thing going on, but her "style" is definitely improving. She is now able to walk with her arms down, instead of out to the side like airplane wings, although she does have to be reminded to walk that way. She is extremely proud of herself and all that she is accomplishing.

Now for the downer - we need prayers. Desperately. Our insurance stopped paying for Sarah Kate's physical therapy sessions about three weeks ago, and we found out this afternoon that they have also denied our appeal. There are still avenues for us to pursue in terms of an appeal, but things are looking grim at this point. As far as assistance programs go, we are "in the gap" in that we are too wealthy to qualify for most programs and not wealthy enough to be able to pay for what we need. We knew going into the surgery that this possibility existed, but we put our faith in God that He would provide, because we knew that this surgery was her best hope for the future. We are estimating the costs to be in the range of a new Toyota Camry, so it's a sizable amount, but not an incomprehensible one. The easiest way to pay for it would be for me to get a job, but there's not much I qualify to do that wouldn't conflict with the daily therapy visits. Ironic. The good news is...it will be tax deductible :-)

The bottom line, though, is that we will find a way, and Sarah Kate has benefitted and will continue to benefit from the care she is receiving. Thanks be to God for the miracles he has worked in Sarah Kate's young life!

And my God shall supply all your need according to His riches in glory by Christ Jesus. Now to our God and Father be glory forever and ever. Amen. - Philippians 4:19-20

A Long Time Coming

It's been 17 days since my last blog, and I've probably lost a lot of folks along the way. It's been a rough 17 days, but I'm back. The last blog was on Saturday, February 18, and on Sunday, February 19, Sarah Kate took a tumble. She had walked all over the house the day before, and she was tired. She fell backwards and hit her head on our hardwood floor. Although she wasn't injured, the fall destroyed her confidence and we went backwards for a while. Each day that week, she was fearful and cried whenever she was encouraged to walk even short distances - much shorter than she had been able to do before. On Thursday, I began crying in the therapy office because she didn't want to take even a single step alone.

On Friday, we went to Park Place in Birmingham and Katie was able to get her take a few steps by fooling her into doing it without thinking about it, but neither of us felt good about what was going on. Sarah Kate and I decided to "surprise" Lisa at Children's South with a visit when we left Park Place. Lisa graciously cut her lunch short and worked with Sarah Kate for a few minutes. She had been walking without the top strap on her braces for several days. Lisa put the top strap back to give her a more secure feeling, and it worked. She began to be more comfortable and started to improve. Although it would be several days before she got back what was lost, she did get there, and we're very thankful.

Many of you have inquired about Sophie, the other little girl who had SDR surgery on January 4. We got to see Sophie and her mom the day we "surprised" Lisa. She is doing great! She was beaming that day - absolutely radiant! Many children who have SDR become more pleasant, happier children after the surgery - presumably because much of the frustration has been alleviated and because they are proud of the things they are accomplishing. She is walking with canes now, which is something she had never attempted prior to the surgery. She has not progressed as quickly as Sarah Kate, but she is also younger by five months and was not able to do as much prior to the surgery. Please continue to pray for her and her family.

I'm taking a small break this week. I'm heading to the beach for a few days and Sarah Kate will be staying with my dad and stepmom in Montevallo, south of Birmingham. They will be taking Sarah Kate to therapy on Friday (bless their hearts!) while I scrapbook, eat seafood, and (hopefully) walk on the beach. I hope to return refreshed and ready to go again! Sarah Kate and I are spending so much time together these days that it's a little bit difficult to remember that I have adult friends. Because of her therapy schedule, she isn't going to be able to go back to preschool this spring, so she isn't really around other children, either. Also, going to Birmingham twice a week and to therapy in the middle of the day the other three weekdays has made it very difficult for me to concentrate on getting things done - even "little" things like the housework. Sarah Kate is tired, and there's a fine line to walk to know when to keep pushing and when to take a break. Please continue to pray for us.

"...though he stumble, he will not fall, for the LORD upholds him with his hand." - Psalm 37:24

Sarah Katenstein

Although we had expected next week to only have to go to Birmingham once, when we went to therapy on Friday it was recommended that Sarah Kate continue to go twice a week for a while longer. Although it was up to us, we have decided to continue the twice a week trips. It will be more difficult on us than one day per week would be, but we believe it is for the best.

A dear lady from our church, Beverly Vaughan, has been sending little notes to Sarah Kate in the mail. Each is just a sentence or two of encouragement, but they are appreciated as we journey down this road. We received one of the notes today. It read:

Sarah Kate, I am so proud of you and so glad Jesus is helping you to walk!! Miss Beverly

Although Beverly's words were written and mailed earlier, they were so fitting for today. The weather here has been cold and icy, so we’ve spent the whole day indoors. Sarah Kate has used this day to her advantage – she has walked all over the house! It started out with walking from this piece of furniture to that one, crossing the hall from this door to another, and so on. She used her canes only once the whole day. Let me say that again – she used her canes only ONCE all day long. Scott even asked her tonight if she would like to walk all by herself to her Sunday School class in the morning, and she said “yes.” She walked to the refrigerator at dinner to get out a container of yogurt. She went back for the ketchup. She walked to the tub at bathtime. She fell, but only rarely.

Sarah Kate's steps are the lurching, halting steps of a tiny Frankenstein, but they are the most wonderful sight to behold! I looked outside the front door tonight, checking on the sleet that was falling steadily. The street light at the corner of our yard was reflected in the window of the house across the street, in the distinct shape of a cross. Yes, Jesus is helping Sarah Kate to walk.

Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these." – Matthew 19:14

These Boots Are Made for Walking

So sorry to those of you who have been religiously checking the blog, only to be disappointed that there is nothing new posted. It's just tough to get around to it sometimes, but I am finally getting around to it - somehow the weekends are tougher that the weekdays. Anywho...

On Thursday afternoon, Sarah Kate walked into physical therapy on two quad canes and walked out on only one. We had encouraged her to try to take a few steps with just one cane, which she did, although under duress. We then suggested that she try to talk a few more feet to the sucker basket, which she also did. Once she had her sucker in hand, she didn't really want to have to give it to me so that she could take her other cane back, so she walked the rest of the way to the car on just the one cane.

On Friday, we went back to Birmingham and Sarah Kate surprised everyone by walking into the therapy office on just the one cane. She was so proud of herself! She got her new "duck canes" on Friday and they are just straight 3/4" PVC poles with the new duck feet rubber tripod cane bases. They don't even have handles - they are just straight poles about 6" taller than the top of her head. She has done great with them, though! We are encouraging her to try to walk with just one cane at times, although it's still a little tough for her. Her new "boots" finally came in, as well, and actually fit this time! We went and bought her some brand new shoes to wear over the new braces - no Nikes this time - Reeboks in a size 8-1/2 wide.

On Sunday, she practiced standing up from a bench, holding the standing position, and then walking. She wasn't particularly enthuiastic about doing it, but she cooperated, nonetheless. M&M's and jellybeans are becoming a standard reward at our house for working hard and not complaining.

Monday morning saw us back in Birmingham for PT and OT. We were fortunate to have a morning appointment this time, so she was not as tired when we arrived and we didn't have to eat our tacos in the car. She walked in using the duck canes, and then walked across the gym without holding onto anything. At the time, she had a large belt, similar to a weightlifter's belt, around her waist because she was about to use the bungees. The therapist, Corinne, and I both believe that she walked so well because she felt more secure with the belt around her waist, so Corinne gave us an elastic brace to wear around her middle when she is practicing walking.

When I sat down to type tonight, I at first was thinking that I didn't have all that much to say. As I sat here, it seemed at first glance that not much progress had been made since my last post. I kept looking over at Sarah Kate as she sat at her table eating mac & cheese and realized that a LOT has happened in just a week's time. At times I'm so focused on getting her to do this or that and taking her here or there, that the big picture gets lost. Continue to pray for us as we press through the daily grind. The other issue I'm having is that she spends so much time "working" that it seems like she is missing out on some of the carefree joy of childhood. It takes some effort for us to just sit back, relax, and wait on the Lord.

In his heart a man plans his course, but the LORD determines his steps. - Proverbs 16:9

It Rained & We Got Some Duck Feet

Monday was a nasty day to be driving, although I was thankful it was only rain and not the 1-2" inches of snow and ice that had been predicted on Sunday night. Sarah Kate and I headed back to Birmingham, with a last minute location switch that put us a little behind schedule. We made it on time, though (both of us with drive-thru taco on our face), to her OT/PT appointment.

Sarah Kate is still nervous about letting go to do things, but she is improving every day. On Monday she stood approximately 20-25 seconds independently, and took 5-6 good independent steps. Lisa made the statement after observing her walk that she has it in her to do it, if she can just get over that fear she'll be walking by herself. Sarah Kate also spent some time in the swings - suspended (picture flying like Superman) in a harness, and then standing on a flat swing (picture a scale) holding on while it moved. She was even able to walk around the swing. The purpose of the swings is to help with her proprioception.

Sarah Kate will have some new canes soon! The current quad canes that she uses are big and bulky, and actually probably slow her down a little bit because the bases are so large that they get in the way of her feet. Her new canes will be made of PVC (homemade canes - Daddy will be proud!) and will have "duck feet" bottoms. The "duck feet" base is actually a flexible tripod style rubber base - more stable than just a tip, but less bulky and awkward than the quad canes. It's a visible symbol of progress!

We also received our dates for the intensive therapy program. The program is four hours/day, five days/week, for three weeks in Birmingham. It's purpose, as I understand it, is to really "fine tune" her skills. After the program she will continue to have therapy, but much less frequently than she is now. She will start the program on April 24 and end on May 12.

Sarah Kate is doing very well in her therapy. She cooperates and pays attention (better than most 3 year olds, anyway, is what I was told) and she works very hard. It's easy to tell when she is afraid, but she presses forward, anyway. I am very proud of her! She's getting lots of suckers and M&M's these days. We are both exhausted - it is not unusual for her to climb back into her bed just a few hours after getting up.

And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope. - Romans 5:3-4

On the Road Again

I've gotten a lot of questions about the blog (in particular, how frequently I plan to post) now that we are home. I've been torn about what to do - the real world is squeezing my time, unlike when we were at the apartment when so many things were "on hold" - so I think I've decided to post twice a week for awhile. We are going to Birmingham twice a week (Mondays and Fridays as of right now), so I'll try to post following each visit.

Physical therapy in Decatur went well this past week. The therapists that worked with her were impressed with her progress thus far. We actually even ran into Sarah Kate's previous physical therapist (from Early Intervention), Rhonda, and she, literally, could not take her eyes off of Sarah Kate. She even expressed an emphatic "that's not fair" while she watched the PT stretching her, because she was doing with ease what Rhonda had struggled with for over two years. Seeing Rhonda gave me a boost, because being with Sarah Kate every day it's more difficult to see the big picture. Sarah Kate was very well behaved at the sessions - mostly, I think, because it was a new place with new "stuff" and new people. We will be in Decatur for therapy Tuesday, Wednesday, and Thursday for now and in Birmingham on Mondays and Fridays. We got a loaner stander from the PT office here, but it's a lot different than the one she used in Birmingham. Instead of being stationary, it rolls (think of it as a wheelchair that you stand up in). She is using it to strengthen her standing posture and stretch her hamstrings, and she thinks it's great fun because she's learning quickly how to maneuver it around the house. Our freshly painted living room and kitchen walls are in serious danger!

Friday afternoon we were back in Birmingham with Carrie. Sarah Kate did really well, and tried something new this time. She was standing on an exercise mat with a wide leather belt around her waist. The belt was then connected with bungees to the walls of a cage on either side of her. She stood catching and throwing a ball and also practiced jumping up and down. The bungees were moved around to give less and less support. She also stood unassisted for several seconds without fear (and without awareness that she was doing it!) We will not be seeing Carrie for the next several weeks, and when we were leaving Carrie told Sarah Kate that the next time she came back she wouldn't need to use the canes. I am cautiously optimistic about what she said. I don't want to be disappointed or grow impatient, but I also believe strongly that Carrie wouldn't say something like that directly to Sarah Kate without a great deal of confidence that it will be true. If she's right, what a miracle that will be!

I've received once again the verse that has been shown to me at every turn along this journey, beginning with scheduling this surgery way back in August, so I'll reprint again today.

...but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. - Isaiah 40:31

There’s No Place Like Home

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

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

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

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

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

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 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

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

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

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

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

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

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

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

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

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

"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

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

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?"

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

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