As every mom does, I am sure, I watched the minutes this evening counting down until the moment Abigail Faith entered our lives. I recalled wanting to toss my natural birthing plan out the window, and thinking the nurse was on board. Only later did I find out that my dear, supportive husband was standing behind me shaking his head no. Poor woman -- a desperate patient one one hand, and her very firm boss on the other.
I seriously thought the IV team, and my epidural were on the way during the 15 minutes it took to go from 6 to 10cm dilation. Nope. I also assumed the doctor would be in the room when the baby arrived. Wrong again. Nothing went as expected that day, including welcoming an Abigail instead of a Jack Logan. The depth of that surprise will never wear off, thankfully.
As 6:26 pm neared I was busy in the kitchen, preparing dinner for the boys. It had been a beautiful day, capped by the full rainbow smiling at Chase and I as we left the gym in the afternoon. I think I heard the rain before I saw it, because the sky really hadn't changed. The pinks of approaching sunset, puffy clouds in the distance and the golden haze in my yard contrasted completely with the deluge that made my jaw drop. The shock of the dissonance made me stop in my tracks, and brought the thought, "The blessings of God are heavy upon us." It only lasted five minutes -- just long enough for me to get the Lord's birthday message for Abbie.
As I finished dinner, and reflected on the year gone by, it struck me that on Abbie's eighth birthday, we had no idea how smart she is. We were a month away from beginning to do math with her, and had just figured out that she could spell. I wonder what she is going to surprise us with this year -- I can hardly wait! I pray that this would be the year that her body would be unbound.
This has already been a fairly lengthy update, but I want to share with you the message we got at church yesterday. It was so exquisitely-timed that I laughed aloud when the subject, and the punchline, were revealed. I think it was God's birthday letter to Abbie (and her family.)
We had a visiting pastor yesterday, who said he would be speaking on faith, using the text in Genesis that describes when Abraham was called to sacrifice his much-prayed for son. His decades of praying for Isaac made my years of pleading for Abbie pale in comparison.
The crux of the message was that there were two sides to that mountain that Abraham and his unaware son were climbing, and they could only see their side. They could not see God coming up the other side to meet them with the ram, to be sacrificed in Isaac's place. Abraham did not delay his obedience in order to wait for God's alternate provision. And, if he had faltered, if he had stopped halfway up, or even just a few steps short, he never would have known God's provision for him. How different would his life and faith have been?
The pastor defined faith as the intersection of our obedience and God's provision. The challenge, he explained, is that we often want to see the provision before we obey. But, "Do not quit. Do not quit. Don't give up. Do not quit!!!" he exhorted us.
Oh no -- we will not quit. We will not stop. We are just trying to keep up with an amazing girl who is charging up that mountain, confident in the provision that we only glimpse dimly. May the Lord bless her deeply this year!
Monday, August 23, 2010
Wednesday, August 11, 2010
Hard Work Rewarded
We are just getting our feet back on the ground after a wonderful 2-week vacation in Washington State. Abbie thrived on long walks through the woods, listening for birds and looking for deer. She also spent quite a bit of time on a massage table positioned next to an enormous window overlooking a grove of pine trees. If a body can say "ahhhhhhh", that's what she looked like much of the vacation. I think she relished not having any appointments or therapies as much as we did.
The day after we got home I had a meeting at the elementary school to revalidate Abbie's eligibility for special education and to discuss the reports written by school staff who had done observations in June and July. Usually with Abbie, the eligibility meeting is simply a check-the-block exercise because it is obvious to everyone that she meets the criteria for provision of special ed. This year, however, threw me a curveball blessing.
There are many categories of eligbility for special ed (i.e. deafness, vision impairment, autism, etc.) Abbie has always fallen into the category titled "multiple disabilites". This seemed entirely appropriate to me, as she has challenges on many fronts. This year, however, the special services coordinator, Ms. B., brought folders for all of us to review, containing the criteria worksheets for each category. For a student to meet the criteria, each question had to be answered "yes." I bit my lip when I read the first criteria under "multiple disabilities". It referred to "intellectual functioning three or more standard deviations below normal". The rest of the questions also included reference to significantly impaired intellectual function. I certainly didn't think this fit Abbie, but I didn't know what the staff would think, given their rather limited exposure to her.
As we finished reading through that worksheet, I didn't even have time to look up before Ms. B. stole my words, saying "I'm not sure Abbie really falls into this category anymore." WOW! They see her!!! They believe me, and her! As a team we determined that Abbie is eligible for special ed under a category titled "Other Health Challenges". In other words, I have a PHYSICALLY disabled daughter, who needs special ed services to work around these challenges to maximize her tremendous intellectual potential. That little girl has worked so, so hard, for so many years....my heart rejoices over her accomplishments and progress, and the fact that more and more she is able to make her own point, which is "I am able!"
She will be homeschooled this year, with collaboration of school therapy staff and perhaps a tutor. They are a great group of folks, so I am looking forward to seeing what we can do together to help Abbie.
We are blessed!
The day after we got home I had a meeting at the elementary school to revalidate Abbie's eligibility for special education and to discuss the reports written by school staff who had done observations in June and July. Usually with Abbie, the eligibility meeting is simply a check-the-block exercise because it is obvious to everyone that she meets the criteria for provision of special ed. This year, however, threw me a curveball blessing.
There are many categories of eligbility for special ed (i.e. deafness, vision impairment, autism, etc.) Abbie has always fallen into the category titled "multiple disabilites". This seemed entirely appropriate to me, as she has challenges on many fronts. This year, however, the special services coordinator, Ms. B., brought folders for all of us to review, containing the criteria worksheets for each category. For a student to meet the criteria, each question had to be answered "yes." I bit my lip when I read the first criteria under "multiple disabilities". It referred to "intellectual functioning three or more standard deviations below normal". The rest of the questions also included reference to significantly impaired intellectual function. I certainly didn't think this fit Abbie, but I didn't know what the staff would think, given their rather limited exposure to her.
As we finished reading through that worksheet, I didn't even have time to look up before Ms. B. stole my words, saying "I'm not sure Abbie really falls into this category anymore." WOW! They see her!!! They believe me, and her! As a team we determined that Abbie is eligible for special ed under a category titled "Other Health Challenges". In other words, I have a PHYSICALLY disabled daughter, who needs special ed services to work around these challenges to maximize her tremendous intellectual potential. That little girl has worked so, so hard, for so many years....my heart rejoices over her accomplishments and progress, and the fact that more and more she is able to make her own point, which is "I am able!"
She will be homeschooled this year, with collaboration of school therapy staff and perhaps a tutor. They are a great group of folks, so I am looking forward to seeing what we can do together to help Abbie.
We are blessed!
Sunday, July 11, 2010
What Abbie's Been Up To
It's been a couple months since a real Abbie update - I apologize for that. There is lots to share, as it has been an exciting summer so far.
Of primary interest, of course, is how she is doing with her hands, after the big surgery in late April. They look beautiful! Her scars are healing really well, and not causing much discomfort. Her thumbs would still prefer to move back toward her palms, so we are managing that with splints that she wears regularly. The outcome we had hoped for - better use of her hands, is coming to fruition as well. She is able to use a smaller switch in her hand which she can click using just the movement of her thumb and fingers. Previously, she would drop her hand backwards, into an undesirable position, to activate her switch. There was quite a cheer the first time she used the little switch!
Now that she can use her hand we determined it was time to really get back to work on communication and use of the computer for schoolwork. For now, the best strategy for Abbie is called "2-step scanning". "Two steps" means two switches for her - one in her hand and one above her foot. This method requires that she scans through available choices with one switch and then selects her choice with another switch.
We thought it would take a couple of weeks for her to learn how to do this, as it requires her to use her vision, reasoning, decision-making and motor skills simultaneously. I was able to borrow quite a bit of software to try out, and decided to start Abbie on one program geared simply toward switch training. She would have to use her "mover" switch (foot) three times to move a picture toward the target. Once it was at the target she would have to use her "selector" switch (hand) to make play the animation represented by the picture.
Two weeks....twenty minutes. Same thing in Abbie's world. She understood the concept right away, and was able to use the system smoothly in about 20 minutes. I skipped through the house gleefully - which yes, did elicit looks of "Does Mom need a nap or an asylum?" I explained to my curious crew that this skill, step-scanning, now opens the door for Abbie to do school on the computer. To write her own sentences, essays, poetry; to take tests to demonstrate her knowledge unequivocally, to paint and draw and color....to have fun!
This is a BIG step!
After considering what Abbie and our family went through this year during her attendance at school, we decided that we will be homeschooling her this year. We may have the support of some school district specialists, such as vision, speech, PT and OT, but that is up to the school at this point. It would be wonderful to include them in our plan, but if it is not feasible, we will move forward eagerly anyway.
Since Abbie will be homeschooled, I have the flexibility to teach her when she is at her brightest, but also to ensure that she has FUN. In this vein, I took her for a Music Therapy evaluation last week. It is not like a music class, which is just exposure, but rather is true therapy, with individualized goals and approaches. She absolutely loved making music by accompanying the piano with a tamborine and then a chime. Our primary goal, in addition to enjoyment, is to elicit more and more vocalization from Abbie. Many kids who experience ongoing music therapy use their voice more often.
The reason this is a goal is because Abbie is doing it already. She is talking, talking, talking...in her own way. Often when someone says "hello", she will quickly vocalize in response. I reinforce this by telling her that it's good manners to answer when someone says "hello", and commend her for being a polite young lady.
The other day at PT, her therapist was asking me many questions about what we do with Abbie at home, when she finally gave up and just started asking Abbie directly because she always answered before I did anyway.
On Wednesday the school vision specialist came to see us. We've never had a functional vision test for Abbie, so I was interested to see what this would be all about. Amy set up a black velcro-board five feet away from Abbie. We gave Abbie three choice to choose from, and then Amy showed her shapes and asked Abbie to identify them. She did really well. Then we used her foot to say "yes" and we would scan through shapes. Even we tried to trick her and show her a shape that was not within her choice pool, she did not fall for it. I was so proud of her. Amy is going to get something called a "CCTV" which can magnify any book or object placed on its tray. Our goal is to allow Abbie to read her own books.
We are at therapy 3 days a week, between PT, OT, Speech and Vital Stim (to strengthen her swallowing), so between that and shuttling around her brothers it is quite a busy summer. But, she continues to blossom and we are so grateful!
I hope that each of you is getting some extra time with your family this summer!
Of primary interest, of course, is how she is doing with her hands, after the big surgery in late April. They look beautiful! Her scars are healing really well, and not causing much discomfort. Her thumbs would still prefer to move back toward her palms, so we are managing that with splints that she wears regularly. The outcome we had hoped for - better use of her hands, is coming to fruition as well. She is able to use a smaller switch in her hand which she can click using just the movement of her thumb and fingers. Previously, she would drop her hand backwards, into an undesirable position, to activate her switch. There was quite a cheer the first time she used the little switch!
Now that she can use her hand we determined it was time to really get back to work on communication and use of the computer for schoolwork. For now, the best strategy for Abbie is called "2-step scanning". "Two steps" means two switches for her - one in her hand and one above her foot. This method requires that she scans through available choices with one switch and then selects her choice with another switch.
We thought it would take a couple of weeks for her to learn how to do this, as it requires her to use her vision, reasoning, decision-making and motor skills simultaneously. I was able to borrow quite a bit of software to try out, and decided to start Abbie on one program geared simply toward switch training. She would have to use her "mover" switch (foot) three times to move a picture toward the target. Once it was at the target she would have to use her "selector" switch (hand) to make play the animation represented by the picture.
Two weeks....twenty minutes. Same thing in Abbie's world. She understood the concept right away, and was able to use the system smoothly in about 20 minutes. I skipped through the house gleefully - which yes, did elicit looks of "Does Mom need a nap or an asylum?" I explained to my curious crew that this skill, step-scanning, now opens the door for Abbie to do school on the computer. To write her own sentences, essays, poetry; to take tests to demonstrate her knowledge unequivocally, to paint and draw and color....to have fun!
This is a BIG step!
After considering what Abbie and our family went through this year during her attendance at school, we decided that we will be homeschooling her this year. We may have the support of some school district specialists, such as vision, speech, PT and OT, but that is up to the school at this point. It would be wonderful to include them in our plan, but if it is not feasible, we will move forward eagerly anyway.
Since Abbie will be homeschooled, I have the flexibility to teach her when she is at her brightest, but also to ensure that she has FUN. In this vein, I took her for a Music Therapy evaluation last week. It is not like a music class, which is just exposure, but rather is true therapy, with individualized goals and approaches. She absolutely loved making music by accompanying the piano with a tamborine and then a chime. Our primary goal, in addition to enjoyment, is to elicit more and more vocalization from Abbie. Many kids who experience ongoing music therapy use their voice more often.
The reason this is a goal is because Abbie is doing it already. She is talking, talking, talking...in her own way. Often when someone says "hello", she will quickly vocalize in response. I reinforce this by telling her that it's good manners to answer when someone says "hello", and commend her for being a polite young lady.
The other day at PT, her therapist was asking me many questions about what we do with Abbie at home, when she finally gave up and just started asking Abbie directly because she always answered before I did anyway.
On Wednesday the school vision specialist came to see us. We've never had a functional vision test for Abbie, so I was interested to see what this would be all about. Amy set up a black velcro-board five feet away from Abbie. We gave Abbie three choice to choose from, and then Amy showed her shapes and asked Abbie to identify them. She did really well. Then we used her foot to say "yes" and we would scan through shapes. Even we tried to trick her and show her a shape that was not within her choice pool, she did not fall for it. I was so proud of her. Amy is going to get something called a "CCTV" which can magnify any book or object placed on its tray. Our goal is to allow Abbie to read her own books.
We are at therapy 3 days a week, between PT, OT, Speech and Vital Stim (to strengthen her swallowing), so between that and shuttling around her brothers it is quite a busy summer. But, she continues to blossom and we are so grateful!
I hope that each of you is getting some extra time with your family this summer!
Saturday, June 19, 2010
Checking Back In
I am so sorry for the extended lapse in updates. Most importantly, Abbie is doing great!
I have a great excuse for being incommunicado:
I have a great excuse for being incommunicado:
The twins and I in front of of the Trevi Fountain in Rome.
I accompanied their Latin class on a tour of Italy in early June. Wow -- or, rather, "Mamma Mia!!" You can imagine the challenges that arise herding over 40 7th and 8th graders through things like customs and foreign public transportation, but they did very well. I fell in love with Italy, and hope to go back one day with Ray.
Abbie was always in my heart, wherever each day happened to find us. One day early in the tour we traveled to Siena, within whose walls development stopped in the 1500s. Visiting the cathedral there was one of the highlights of the entire trip for me. It is stunning, and humbling to realize it was constructed in the 1300s.
As our time in the cathedral was coming to a close I caught a glimpse of another class mom and her daughter kneeling in prayer. I waited until they were done, and then asked whether I, as a non-Catholic, could also light a candle and pray. When they said "yes", I almost started to cry. I found my way to the rows of candles and chose one for Abbie. I could barely see to light it, so once I accomplished that I quickly went to kneeling and closed my eyes. I wept in a place that I know many mothers long ago also wept and begged, as the bubonic plague ravaged Siena.
As peace finally descended, I opened my eyes to find that I was kneeling before an enormous painting depicting the Bible story of the woman who needed healing reaching out to grasp the hem of Christ's robe. I felt again the warm laughter of God, reminding me that He knows....He knows.
That afternoon, in Florence, another mom, Caroline and I hiked to the top of the dome of the cathedral. Stunned by the view, I was feeling very far away from home. Caroline and I chatted briefly, and for some reason we said the words "Outrigger Club". Just then, from behind us, a couple asked "Are you from Hawaii??"
The woman looked at me and said, "You look so familiar! Do you have soccer players?"
"No," I answered. "I have a football player, a wrestler, and a water polo player...and general rascals, but no soccer stars.'
She looked stumped, so for some reason I said, "Hawaii Kai Church?"
Her face lit up and she said, "Yes! You are Abbie's mom!!"
I caught my breath. Twelve time zones away from my girl, I was "Abbie's mom". What a privilege.
We chatted for a while, and then as we walked away, Caroline said, "You've gotta tell Abbie that she has a fan club all over the world."
Towards the end of our journey, we visited a church in Rome called "St. Peter in Chains." Compared the the elaborate cathedrals and enormous structures found elsewhere, this church is relatively simple. Our tour guides explained the name of the church before we went in. Apparently, sometime during the 1300s there were two sets of chains inside the church. One night, somehow the chains became linked. No one could explain or understand how this had happened.
The set of chains is on display at the front of the sanctuary. The boys and I approached, paid 1 Euro for a candle to continue our "Candles Across Italy" tradition begun in Siena, and then turned toward the chains. I heard so insistently, "I am the Lord. I knit together what man cannot understand. I am the Lord. I knit together what man cannot." I froze. I pictured Abbie's brain, and prayed with thanksgiving to the Lord who knits together what I will never comprehend. This moment was so overwhelming that I can barely type about it now.
The longest leg of our return flight was from Frankfurt to San Francisco. Our group was spread out throughout the plane, and I was almost at the back. As I approached, and spotted my row-mates, the thought, "no, no, no" screamed through my brain. My seat was on the aisle. Next to that sat a young boy. Next to him was his father, holding a toddler. In front of him was the mother, sitting next to a young girl. This was going to be a nightmare!!
Or not.
They were the sweetest family from Finland, with the most well-behaved children. Lauri, the five-year-old boy next to me colored, ate a few sweets, and spoke rarely and quietly. Elin, the 18-month-old girl slept for 4 hours and then became my buddy. After she would press the buttons on the armrest we would both say "Yay!". A very non-Finnish thing to say, laughed her father, Matti.
As we talked about the blessings of children, Abbie came up. When Matti found out how Abbie had been injured, he became very interested, remarking that his father is a neurologist/neuroscientist in Finland. He has mostly studied Soviet/Eastern European research, which I think is terrific. For all the evils of Communism, those Soviet scientists were able to get funding for the wackiest studies - which often turned out not to be wacky at all. He asked permission to share Abbie's story with his father, just in case he would have any insight. He also asked me to tell Abbie that a family in Finland would be thinking of and rooting for her. Yes, she really does have a fan club all over the world. Abbie grinned when she heard this.
Our girl looked fantastic when I arrived home. I owe so much to Ray, Genevieve, Alicia, Rae, and Madeleine for making it possible for me to go so far away for so long. I think Abbie relished extra time with her Daddy, and I can tell that it meant a lot to him, too.
Now, it is back to work, and back to rehab from the surgery. But, we did bring some Italia home with us. Abbie defines the phrase on the T-shirt I brought her from Venice. "Ciao Bella" has never been more appropriate! We also went to the library on Thursday and checked out a bunch of books from Italy so she could learn about where we went. She soaked up a selection about Pompeii, and is enjoying music by Andrea Boccelli. I pray that one day Abbie and I will kneel together in Siena's cathedral, and offer a few bars of our unending song of thanks and praise.
Thursday, May 13, 2010
The Initial Unveiling
So far we've been at the children's hospital every day this week. We get a break today, and then we are back down there tomorrow. Fortunately, it has all been good stuff!!
Monday, we went for a check-up with Abbie's gastroenterologist. I was a little concerned because she is skinny these days. After her intestinal infection in March, and then the surgery, she has lost some weight these past few months. Not only was the doctor not worried, but the reason he was not worried made me almost sing.
"The body has a hierarchy of needs, when it comes to distributing calories. The brain gets fed first. With the gains she is making, it is obvious that her brain is getting what it needs." Woo-hoo!! He also said that her quick recovery from a long surgery, as well as how much taller she is getting, shows that her body is healthy and getting what it needs. A great visit.
Tuesday we went for a follow-up with the orthopedic surgeon. I was startled a bit, but excited, when he decided to take the casts off a week early. Here's what her matching clubs looked like:
Monday, we went for a check-up with Abbie's gastroenterologist. I was a little concerned because she is skinny these days. After her intestinal infection in March, and then the surgery, she has lost some weight these past few months. Not only was the doctor not worried, but the reason he was not worried made me almost sing.
"The body has a hierarchy of needs, when it comes to distributing calories. The brain gets fed first. With the gains she is making, it is obvious that her brain is getting what it needs." Woo-hoo!! He also said that her quick recovery from a long surgery, as well as how much taller she is getting, shows that her body is healthy and getting what it needs. A great visit.
Tuesday we went for a follow-up with the orthopedic surgeon. I was startled a bit, but excited, when he decided to take the casts off a week early. Here's what her matching clubs looked like:
Her thumbs were completely swaddled in fiberglass, so we could barely see the glint of the metallic pin holding her thumbs in position.
Kyle decorated this cast within two minutes of Abbie being home after the surgery. Too bad that he used the smelliest, most industrial black marker ever made. Poor Abbie was sitting amid fumes for a couple hours, but knowing her brother loves her more than made up for it.
The fingers were well-padded, which also hid the pins holding her second and third fingers in place.
As the first cast came off, I caught my breath and must have groaned a bit, because Dr. B. said "Hey, you can't gross out now!" To which I replied, "There is a paperclip sticking out of my daughter's thumb. I just need a moment."
I apologize for the blurriness of the following photos - a combination of using a phone camera, holding her with my other hand, and trying not to look too closely....
Abbie will certainly have her longest thumbnails ever with that shiny trellis underneath. The pin extends a good ways down the bone.
The incision along the "life line" is healing well, and it sure is nice to be able to see all of her palm again, without her thumb in the way.
Yep, those pins go right through her skin and into the bones of her fingers. Dr. B is using them to give those joints a good chance to get used to their new positions.
As creeped out as I was looking at the pins, initially, we are now pretty used to them. We just have to take care to keep them wrapped/padded/covered so that they don't catch on anything. Can you imagine? Ouch!!
Speaking of "ouch"...Dr. B. is planning to take the pins out in his office next Tuesday. I trust him immensely, and he apparently does this all the time, but still...this is my baby girl, and I am a little squeamish and a little concerned in thinking about this. We have lots of tools in our pain management bag, and I'll be packing all of them with me.
We also took the dressings off her hips, which look great, and her knees, which are also healing well. She has been cleared to begin range of motion exercises again, so back to work we go!
Before we went to get her casts off, Abbie and I sat outside reading Psalms. Suddenly, it hit me. This date could have marked the day she died. On May 10th, we were advised to disconnect life support, and after hearing the reasons why, consented to do so the following day. Abbie voted to the contrary later that evening, but the effects of having to make that decision have never left me.
May 3rd may remind us every year of what we have lost, but May 11th sings to us about what we still have -- and she is beautiful!
Tuesday, May 04, 2010
Mile Marker Six
I didn't realize that this would be the year when May 3rd would fall on Monday until the twins and I were going through the calendar recently to plan their 13th birthday bash. I momentarily caught my breath, and then determined that it was not going to matter.
In the week since that realization I have pressed deeply into Paul's exhortation to let go of what lies behind and press forward. God was so gracious to me in making today look and feel so different than the first day of our journey six years ago. Rainy, voggy, steamy -- it in no way resembled the bright, shiny day our lives changed.
But, don't you know, whenever we make bold statements, like "it is not going to matter" we are sure to be tested severely. And, so it has been today. As I type, Abbie is an inpatient once again, having been admitted through the ER because of bilateral pneumonia. Can I tell you though, I will simply not be moved...I will not.
After I had dropped Genevieve and Abbie off at the ambulance entrance to the ER, I parked nearby. Casting Crowns' "Praise You Through the Storm" came on the radio, just as I was looking up to see the beloved church steeple that saw me through so many nights. I laughed. Out loud. With joy. I realized that I am not the woman who arrived at this hospital in an ambulance and in shock all those years ago.
Entering the ER I hardly glanced at Trauma 1, where Abbie was saved, and the sounds and smells didn't turn my stomach. All day long I had practiced not dwelling long on memories of that day when normalcy died. So, by the time I reached Abbie's bed I might as well have been strolling through the mall. I am not kidding. God wasn't exactly carrying me like he did that first horrific night, it was more like we were dancing together.
I realized that it has become easier lately to let go of what lies behind (the hardest part being not dwelling on memories of who she was before she was hurt), because I feel like I need both hands available to receive all the exciting things being unleashed in Abbie's life.
This girl is utterly amazing. Lying on a gurney with junky lungs, she was still using her eyes to read along with me the novel we are just starting. She paid attention to every conversation. When her pediatrician mentioned that she'd had knee surgery, Abbie turned her head to look at her in shock, and you could almost see her thinking "Wow! Even doctors have to go through this sometimes."
I just can't convey how great she looks, how attuned she is to everything going on around her, and how freely she was swinging her casts around tonight. Tears of awe are falling as I look at her. So brave, so strong. She is not the same little girl who started this grand adventure, either. She has been refined more ferociously than I can imagine, and yet she grins. I am just so grateful that she chose to stay with us.
The week before Abbie's surgery Kyle brought home a little gift for Abbie from school. I had no idea who sent it, and was tickled to read the card from his English teacher. She has obviously been following Abbie, which always touches my heart, but what really endeared her to me was when she wrote about Kyle, who can drive her crazy at times, yet it still one of her favorites. I know just how she feels! She noted that Abbie has an appreciation for Robert Frost, as does she. I had expected a little booklet of Frost's poetry in the package, so was stunned when a beautiful pendant appeared instead. Its words sum up these years so beautifully:
In the week since that realization I have pressed deeply into Paul's exhortation to let go of what lies behind and press forward. God was so gracious to me in making today look and feel so different than the first day of our journey six years ago. Rainy, voggy, steamy -- it in no way resembled the bright, shiny day our lives changed.
But, don't you know, whenever we make bold statements, like "it is not going to matter" we are sure to be tested severely. And, so it has been today. As I type, Abbie is an inpatient once again, having been admitted through the ER because of bilateral pneumonia. Can I tell you though, I will simply not be moved...I will not.
After I had dropped Genevieve and Abbie off at the ambulance entrance to the ER, I parked nearby. Casting Crowns' "Praise You Through the Storm" came on the radio, just as I was looking up to see the beloved church steeple that saw me through so many nights. I laughed. Out loud. With joy. I realized that I am not the woman who arrived at this hospital in an ambulance and in shock all those years ago.
Entering the ER I hardly glanced at Trauma 1, where Abbie was saved, and the sounds and smells didn't turn my stomach. All day long I had practiced not dwelling long on memories of that day when normalcy died. So, by the time I reached Abbie's bed I might as well have been strolling through the mall. I am not kidding. God wasn't exactly carrying me like he did that first horrific night, it was more like we were dancing together.
I realized that it has become easier lately to let go of what lies behind (the hardest part being not dwelling on memories of who she was before she was hurt), because I feel like I need both hands available to receive all the exciting things being unleashed in Abbie's life.
This girl is utterly amazing. Lying on a gurney with junky lungs, she was still using her eyes to read along with me the novel we are just starting. She paid attention to every conversation. When her pediatrician mentioned that she'd had knee surgery, Abbie turned her head to look at her in shock, and you could almost see her thinking "Wow! Even doctors have to go through this sometimes."
I just can't convey how great she looks, how attuned she is to everything going on around her, and how freely she was swinging her casts around tonight. Tears of awe are falling as I look at her. So brave, so strong. She is not the same little girl who started this grand adventure, either. She has been refined more ferociously than I can imagine, and yet she grins. I am just so grateful that she chose to stay with us.
The week before Abbie's surgery Kyle brought home a little gift for Abbie from school. I had no idea who sent it, and was tickled to read the card from his English teacher. She has obviously been following Abbie, which always touches my heart, but what really endeared her to me was when she wrote about Kyle, who can drive her crazy at times, yet it still one of her favorites. I know just how she feels! She noted that Abbie has an appreciation for Robert Frost, as does she. I had expected a little booklet of Frost's poetry in the package, so was stunned when a beautiful pendant appeared instead. Its words sum up these years so beautifully:
Two roads diverged in a wood...
And I took the one less traveled by,
And that has made all the difference.
May God bless you for your faithful support of our family. I am certain my assignment in Heaven will be drafting Thank You cards, because I will need an eternity to catch up on the ones I owe. Thank you for traveling this narrow road with us...YOU have made all the difference.
To God be the glory.
Wednesday, April 28, 2010
Abbie's Extreme Makeover
We drove to the hospital in the darkness on Monday morning, thinking we would be driving home with Abbie later that day, after a 3.5 hour surgery. The picture began to change in pre-op, when we met with her surgeon, Dr. B.
He had spent some more time looking at her Xrays, and refining his plan. In addition to releasing the muscles holding both thumbs to her palms, he recommended releasing the muscles leading to the middle and ring fingers to allow them to move more freely. He mentioned he would be pinning these with temporary pins that he could remove in the office in a few weeks. This was new, so I was digesting that when he added that as he released the thumbs there may not be enough skin to accommodate repositioning them because they'd been pulled in for so long. The answer to that problem could possibly be skin grafts taken from her groin. Another new aspect, and I was really not excited about this one. But, I feel so blessed to have a surgeon in whom we can place our unquestioning trust. So, I walked Abbie into the OR around 7:30, now knowing that the surgery would take closer to 6 hours. She was already asleep after so much early morning excitement, so the transition was easy.
Then, it was upstairs to begin the familiar wait. The first morning after Abbie's initial injury I stood in that same cafeteria and determined that I needed to eat even if I didn't feel like it. So, I decided on a certain breakfast that I would eat every single morning so that I wouldn't ever have to think about it again. Mini-Wheats, a hard-boiled egg, OJ, a banana and water. I reverted back to my old stand-by, replacing the Mini-Wheats with oatmeal. I thought I would see Abbie before lunch was over at 2.
Assuming we'd be going home, I'd not packed anything to stay overnight, so Ray and I dashed home at lunchtime, grabbed some things, picked up some sandwiches and hurried back. It felt strange to leave the hospital with Abbie in the OR, but the sunshine was medicine for us, and I realized that a vigil doesn't have to be held in sterile, flourescent-lit rooms. I was praying just as hard surrounded by palms and bougainvillea.
At 12:45 the OR nurse called to say that Dr. B. was finished with the hands. "Um...OK, did he start with those?" It had already been 5 hours and her legs hadn't been touched. This day was going to be even longer than we'd thought.
Lynette, Abbie's PT, had gone in to observe the surgery -- what a blessing. I was thrilled when she called to give me an update and reported that Abbie had not needed skin grafts for her thumbs.
Around 4 the boys came up the hospital to wait with us (and to eat the grilled cheeses they love so much). When the phone rang at 5 I was looking forward to the invitation to meet Abbie in recovery. Nope. "We are just starting on the left leg. 1.5 more hours." I questioned the nurse to make sure I heard correctly "One and half more hours??"
Finally at 6:45 the surgeon called and asked me to come down. He met me in the hall because they weren't quite ready for us in recovery. I was thrilled when he said, "I normally don't say this, but this could be one of the best surgeries I've done." Hurrah. Our esteem for him multiplied exponentially through this experience. Over 10 hours spent working on Abbie without eating, drinking, or even using the restroom (Ray asked that question, not me:)! I cannot fathom the skill, focus, and endurance that Dr. B. possesses, but am so grateful for it.
Abbie ended up spending almost 3 hours in recovery, as we did have a little bit of excitement. But, once she got all her normal meds, which were now greatly overdue because of the length of the surgery, she calmed down nicely. We made it to her room around 10pm.
They left an epidural in to keep her lower half numb, and we used fentanyl to help with her hand pain. She did great. After 10 hours on the table her lungs recovered nicely, and she was able to come off oxygen competely the day after the surgery.
All in all, Abbie got: releases of three muscles related to the thumbs, pinning of the thumbs into a good position, releases of muscles related to middle and ring fingers, pinning of those fingers into a good position, Botox in her forearm and bicep, removal of her hip hardware (which we now have...it's very impressive and looks like you could hang a good-sized shelf with it), removal of the rods in her femurs and placement of longer ones, releases of her glute muscles, and Botox in her quad muscles. She also has two beautiful blue casts on her hands and forearms. They look like clubs, so her brothers had better stay in line. They will come off, and the pins will come out, in 3-4 weeks.
We've ended up spending two nights in the hospital, which was a good decision, as her pain level seems much better today. We look forward to going home very soon.
Abbie was giddy getting in the van with her Daddy and brothers early Monday morning - -what an adventure. But, she became concerned and began to complain when we pulled into the hospital parking lot. We have one little verse that she and I share during scary times, "When I am afraid, I will trust in Thee" -- Psalm 56:3. I whispered this into her ear over and over on the way to her pre-op bed. When I began to read our daily Psalms to her, a tear came when I realized 56 was on the list. It was like hearing a favorite song just when you need it most. God has been so gracious to us!
Thank you for your prayers - chalk up one more victory for Abbie's Army. We have already seen the fingers on Abbie's right hand move independent of each other - something she could not do before. So, I look forward to some exciting updates in the weeks and months to come.
To God be the glory, great things He has done!
He had spent some more time looking at her Xrays, and refining his plan. In addition to releasing the muscles holding both thumbs to her palms, he recommended releasing the muscles leading to the middle and ring fingers to allow them to move more freely. He mentioned he would be pinning these with temporary pins that he could remove in the office in a few weeks. This was new, so I was digesting that when he added that as he released the thumbs there may not be enough skin to accommodate repositioning them because they'd been pulled in for so long. The answer to that problem could possibly be skin grafts taken from her groin. Another new aspect, and I was really not excited about this one. But, I feel so blessed to have a surgeon in whom we can place our unquestioning trust. So, I walked Abbie into the OR around 7:30, now knowing that the surgery would take closer to 6 hours. She was already asleep after so much early morning excitement, so the transition was easy.
Then, it was upstairs to begin the familiar wait. The first morning after Abbie's initial injury I stood in that same cafeteria and determined that I needed to eat even if I didn't feel like it. So, I decided on a certain breakfast that I would eat every single morning so that I wouldn't ever have to think about it again. Mini-Wheats, a hard-boiled egg, OJ, a banana and water. I reverted back to my old stand-by, replacing the Mini-Wheats with oatmeal. I thought I would see Abbie before lunch was over at 2.
Assuming we'd be going home, I'd not packed anything to stay overnight, so Ray and I dashed home at lunchtime, grabbed some things, picked up some sandwiches and hurried back. It felt strange to leave the hospital with Abbie in the OR, but the sunshine was medicine for us, and I realized that a vigil doesn't have to be held in sterile, flourescent-lit rooms. I was praying just as hard surrounded by palms and bougainvillea.
At 12:45 the OR nurse called to say that Dr. B. was finished with the hands. "Um...OK, did he start with those?" It had already been 5 hours and her legs hadn't been touched. This day was going to be even longer than we'd thought.
Lynette, Abbie's PT, had gone in to observe the surgery -- what a blessing. I was thrilled when she called to give me an update and reported that Abbie had not needed skin grafts for her thumbs.
Around 4 the boys came up the hospital to wait with us (and to eat the grilled cheeses they love so much). When the phone rang at 5 I was looking forward to the invitation to meet Abbie in recovery. Nope. "We are just starting on the left leg. 1.5 more hours." I questioned the nurse to make sure I heard correctly "One and half more hours??"
Finally at 6:45 the surgeon called and asked me to come down. He met me in the hall because they weren't quite ready for us in recovery. I was thrilled when he said, "I normally don't say this, but this could be one of the best surgeries I've done." Hurrah. Our esteem for him multiplied exponentially through this experience. Over 10 hours spent working on Abbie without eating, drinking, or even using the restroom (Ray asked that question, not me:)! I cannot fathom the skill, focus, and endurance that Dr. B. possesses, but am so grateful for it.
Abbie ended up spending almost 3 hours in recovery, as we did have a little bit of excitement. But, once she got all her normal meds, which were now greatly overdue because of the length of the surgery, she calmed down nicely. We made it to her room around 10pm.
They left an epidural in to keep her lower half numb, and we used fentanyl to help with her hand pain. She did great. After 10 hours on the table her lungs recovered nicely, and she was able to come off oxygen competely the day after the surgery.
All in all, Abbie got: releases of three muscles related to the thumbs, pinning of the thumbs into a good position, releases of muscles related to middle and ring fingers, pinning of those fingers into a good position, Botox in her forearm and bicep, removal of her hip hardware (which we now have...it's very impressive and looks like you could hang a good-sized shelf with it), removal of the rods in her femurs and placement of longer ones, releases of her glute muscles, and Botox in her quad muscles. She also has two beautiful blue casts on her hands and forearms. They look like clubs, so her brothers had better stay in line. They will come off, and the pins will come out, in 3-4 weeks.
We've ended up spending two nights in the hospital, which was a good decision, as her pain level seems much better today. We look forward to going home very soon.
Abbie was giddy getting in the van with her Daddy and brothers early Monday morning - -what an adventure. But, she became concerned and began to complain when we pulled into the hospital parking lot. We have one little verse that she and I share during scary times, "When I am afraid, I will trust in Thee" -- Psalm 56:3. I whispered this into her ear over and over on the way to her pre-op bed. When I began to read our daily Psalms to her, a tear came when I realized 56 was on the list. It was like hearing a favorite song just when you need it most. God has been so gracious to us!
Thank you for your prayers - chalk up one more victory for Abbie's Army. We have already seen the fingers on Abbie's right hand move independent of each other - something she could not do before. So, I look forward to some exciting updates in the weeks and months to come.
To God be the glory, great things He has done!
Tuesday, April 06, 2010
Homeschool Helper
After visiting the pediatrician today, we were able to reschedule Abbie's surgery: April 26th. We covet your prayers leading up to it, as we have expanded the scope of the surgery a bit.
Abbie lost some weight during her recent illness, and the Botox we are planning to use in her arms is apportioned by weight. The surgeon can only use so many milligrams of it per kilogram of Abbie's weight. There were three planned injection sites on each arm: in the thumb area, on the forearm and in the bicep. In trying to parcel out the limited amount of Botox, and looking at how stubbornly the thumb likes to lay on her palm, we agreed that simply injecting Botox into that strong muscle would not accomplish much. We felt it better to use the available Botox at the other two injection sites and do a muscle release for each thumb. This entails nipping the muscle and then putting Abbie in casts for a few weeks post-op to allow her thumbs to learn their new position.
The lower extremity work will still include removing the hardware from her hip surgery, and replacing the rods in her femurs with longer ones, but we have also decided that since the surgeon will be right there, releases of the gluteal muscles would be helpful. He did this during her hip surgery 1.5 years ago, but said that he "undercorrected" them, because he didn't want to overdo it and have her end up with contracted hamstrings. That is definitely NOT a challenge for Abbie, so he is going to loosen them further now. This will make it easier for her to sit up straight. She can do it now, but as soon as we seat her she scoots her bottom forward and rolls her sacrum under so she ends up sitting in a horrible position. She won't need any casts on her legs, thank goodness!
She is getting back in the swing of school, and worked very hard for me today. I had the voice output portion of her switch sitting on the floor near her chair. As we began doing reading, and she was consistenly using the switch to answer questions, Panda became very curious. He figured out that he could press the switch with his nose to have it say "yes." Abbie and Panda both got a kick out of that! I think she liked having a homeschool helper today.
Because we want Abbie to recover completely from her illness, and want to avoid exposing her to any other bugs, she will not be attending school before her surgery. Afterwards, with casts on both arms, and sore legs and bottom, she will not be ready to go back to school for several weeks. That basically takes us to the end of the school year. The school has offered something called "Home Hospital Instruction" while she is out, but it's only 3 hours a week. We have gotten into a good routine lately, and I think adding in a tutor for only three hours a week would cause more upheaval than it may be worth, so we'll continue schooling on our own for now.
We had a full, wonderful day on Easter. I hope to post some pictures soon. We were blessed with much delicious food, many good friends, and the joy that true freedom brings.
May God bless you today!
Abbie lost some weight during her recent illness, and the Botox we are planning to use in her arms is apportioned by weight. The surgeon can only use so many milligrams of it per kilogram of Abbie's weight. There were three planned injection sites on each arm: in the thumb area, on the forearm and in the bicep. In trying to parcel out the limited amount of Botox, and looking at how stubbornly the thumb likes to lay on her palm, we agreed that simply injecting Botox into that strong muscle would not accomplish much. We felt it better to use the available Botox at the other two injection sites and do a muscle release for each thumb. This entails nipping the muscle and then putting Abbie in casts for a few weeks post-op to allow her thumbs to learn their new position.
The lower extremity work will still include removing the hardware from her hip surgery, and replacing the rods in her femurs with longer ones, but we have also decided that since the surgeon will be right there, releases of the gluteal muscles would be helpful. He did this during her hip surgery 1.5 years ago, but said that he "undercorrected" them, because he didn't want to overdo it and have her end up with contracted hamstrings. That is definitely NOT a challenge for Abbie, so he is going to loosen them further now. This will make it easier for her to sit up straight. She can do it now, but as soon as we seat her she scoots her bottom forward and rolls her sacrum under so she ends up sitting in a horrible position. She won't need any casts on her legs, thank goodness!
She is getting back in the swing of school, and worked very hard for me today. I had the voice output portion of her switch sitting on the floor near her chair. As we began doing reading, and she was consistenly using the switch to answer questions, Panda became very curious. He figured out that he could press the switch with his nose to have it say "yes." Abbie and Panda both got a kick out of that! I think she liked having a homeschool helper today.
Because we want Abbie to recover completely from her illness, and want to avoid exposing her to any other bugs, she will not be attending school before her surgery. Afterwards, with casts on both arms, and sore legs and bottom, she will not be ready to go back to school for several weeks. That basically takes us to the end of the school year. The school has offered something called "Home Hospital Instruction" while she is out, but it's only 3 hours a week. We have gotten into a good routine lately, and I think adding in a tutor for only three hours a week would cause more upheaval than it may be worth, so we'll continue schooling on our own for now.
We had a full, wonderful day on Easter. I hope to post some pictures soon. We were blessed with much delicious food, many good friends, and the joy that true freedom brings.
May God bless you today!
Thursday, April 01, 2010
Brave Little Soul
Leaving Seattle, we thought Abbie had turned the corner and would be back to her spunky self in short order. Not so fast. Her fever began rising again, and the diarrhea returned. Her pediatrician explained that this bacterial infection can flare and recede for 30 days or so...ugh.
In light of her current health, her orthopedic pre-op appointment yesterday resulted in us postponing the surgery, again. We had planned to do it in February, but then her leg was broken. We are hoping that this will only be a 2-3 week delay, and given her recurring fevers, started her on Zithromax yesterday.
She seems a bit better today, and is really doing well with her physical workouts. Schoolwork is a whole 'nother matter. She just doesn't have the energy to engage right now, so I've been letting her rest. Math and reading will always be there.
It warmed my heart when Abbie's nurse was asking her about Spring Break. What elicited the biggest smile was when Abbie was asked if she got to see Chase. She loves that brother so much, even now that he is gone for much of the year.
I'm a huge chat group lurker, and recently on one of them was a story that captured the vision I've had in my mind for many years. I've long known that it was Abbie's choice to come back to us, and pictured her bouncing up and down, arm raised as high as it would go (probably held up by the other arm), pleading, "Me, me, me -- pick me. Abbie can do it!" (She still often referred to herself in the third person). Jesus smiled down at her, knowing full well what she was made of, and granted her wish.
This is the story:
The Brave Little Soul
By: John Alessi
Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."
Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.
In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.
While we do wait for Abbie's full restoration, her miracle has already happened.
We look forward with much joy to celebrating Easter -- the confirmation of our hope. I pray that you have a wonderful time of both reflection and celebration as well!
He is Risen!
In light of her current health, her orthopedic pre-op appointment yesterday resulted in us postponing the surgery, again. We had planned to do it in February, but then her leg was broken. We are hoping that this will only be a 2-3 week delay, and given her recurring fevers, started her on Zithromax yesterday.
She seems a bit better today, and is really doing well with her physical workouts. Schoolwork is a whole 'nother matter. She just doesn't have the energy to engage right now, so I've been letting her rest. Math and reading will always be there.
It warmed my heart when Abbie's nurse was asking her about Spring Break. What elicited the biggest smile was when Abbie was asked if she got to see Chase. She loves that brother so much, even now that he is gone for much of the year.
I'm a huge chat group lurker, and recently on one of them was a story that captured the vision I've had in my mind for many years. I've long known that it was Abbie's choice to come back to us, and pictured her bouncing up and down, arm raised as high as it would go (probably held up by the other arm), pleading, "Me, me, me -- pick me. Abbie can do it!" (She still often referred to herself in the third person). Jesus smiled down at her, knowing full well what she was made of, and granted her wish.
This is the story:
The Brave Little Soul
By: John Alessi
Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."
Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.
In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.
While we do wait for Abbie's full restoration, her miracle has already happened.
We look forward with much joy to celebrating Easter -- the confirmation of our hope. I pray that you have a wonderful time of both reflection and celebration as well!
He is Risen!
Wednesday, March 24, 2010
Good News
I collapsed on the couch in Abbie's room at 9pm last night, and told Genevieve to wake me at 10. The next thing I knew, it was morning. I suppose two nights of very little sleep had caught up with me, and she is far too kind to wake me. She did the entire night shift on her own!
Abbie seemed to be comfortable, and her, uh...production was beginning to look a little bit more normal. The attending physician stopped by around 11 with the results of the stool cultures. None of the top three suspects is the culprit. It turns out that a bacteria called "Camphylobacter" is the cause of Abbie's problems. It lives in the bodies of chickens. I only use chicken to make gelatin/stock for Abbie, so the source was apparent.
After about three days of infection with this bacteria, it doesn't help much to give antibiotics, so Abbie will not be on any extra medications. And, because it seemed she has turned the corner from her appearance, her temperature swings becoming smaller, and her stool looking better, they released us today! I am typing at the cabin in the mountains!!
There was one critical element to Abbie's discharge, which reiterated once again how the Lord watches over her. Because this infection is food-related, we cannot use any of the food we brought with us, and need to use a special canned formula. Because we are going to be here for a while, the hospital was scrambling to pull together enough of the formula for us.
I called my friend, Sue Searles (Luke's mom) because she lives in Tacoma, and has been looking for a new team to help with Luke's muscle tone. After I spoke to Dr. A., the physiatrist, yesterday, I was so excited to tell Sue about this wonderful resource in her area. I was thrilled when Sue said, "Oh - we have an appointment with her next week." Sue blenderizes Luke's food, just like we do for Abbie, and has for years. So, I was surprised when she told me that she'd begun stockpiling cases of the very formula Abbie needs, because her family is going on a cross-country trip this summer.
"Hey, I can just bring you a case!' she offered. I hated to have her drive the hour up the freeway, so I told her I'd try to have the hospital work it out. When it seemed to become a big glitch today, I phoned Sue again, and told her that we could really use that case of formula.
Her answer surprised me yet again. "You know, I just love that drive to Cle Elum. Let me bring it up to you tomorrow!' Now..you must know that this will be a 2.5 hour drive, each way, for Sue. She is one of the busiest people I know, so this is no small effort for her. What a generous, and critical, blessing she is giving us!
Would you say a special prayer for Sue and her family tonight, including her little miracle man, Luke? And, would you keep praying for Abbie? She is glad to be home, but still uncomfortable. She doesn't seem as sleepy, but now she seems to be experiencing more pain instead of sleeping through it.
She was happy to hear the voices of her cousins, Cooper (7) and Oscar ("four-and-a-half", he would like you to know) last night. Because she was in isolation, they couldn't come into her room, and she was rolled onto her side looking away from the door when they arrived. However, when she heard "Hi Abbie!" she turned her head as far as she could to see them....love that! It was medicine for me to see my sister and her boys (and also a treat to chow down on yummy Vietnamese food they brought.)
In so many ways we were blessed through the challenge, and we are so thankful to be home. Your prayers paved the way and carried us along....bless you for that!
Abbie seemed to be comfortable, and her, uh...production was beginning to look a little bit more normal. The attending physician stopped by around 11 with the results of the stool cultures. None of the top three suspects is the culprit. It turns out that a bacteria called "Camphylobacter" is the cause of Abbie's problems. It lives in the bodies of chickens. I only use chicken to make gelatin/stock for Abbie, so the source was apparent.
After about three days of infection with this bacteria, it doesn't help much to give antibiotics, so Abbie will not be on any extra medications. And, because it seemed she has turned the corner from her appearance, her temperature swings becoming smaller, and her stool looking better, they released us today! I am typing at the cabin in the mountains!!
There was one critical element to Abbie's discharge, which reiterated once again how the Lord watches over her. Because this infection is food-related, we cannot use any of the food we brought with us, and need to use a special canned formula. Because we are going to be here for a while, the hospital was scrambling to pull together enough of the formula for us.
I called my friend, Sue Searles (Luke's mom) because she lives in Tacoma, and has been looking for a new team to help with Luke's muscle tone. After I spoke to Dr. A., the physiatrist, yesterday, I was so excited to tell Sue about this wonderful resource in her area. I was thrilled when Sue said, "Oh - we have an appointment with her next week." Sue blenderizes Luke's food, just like we do for Abbie, and has for years. So, I was surprised when she told me that she'd begun stockpiling cases of the very formula Abbie needs, because her family is going on a cross-country trip this summer.
"Hey, I can just bring you a case!' she offered. I hated to have her drive the hour up the freeway, so I told her I'd try to have the hospital work it out. When it seemed to become a big glitch today, I phoned Sue again, and told her that we could really use that case of formula.
Her answer surprised me yet again. "You know, I just love that drive to Cle Elum. Let me bring it up to you tomorrow!' Now..you must know that this will be a 2.5 hour drive, each way, for Sue. She is one of the busiest people I know, so this is no small effort for her. What a generous, and critical, blessing she is giving us!
Would you say a special prayer for Sue and her family tonight, including her little miracle man, Luke? And, would you keep praying for Abbie? She is glad to be home, but still uncomfortable. She doesn't seem as sleepy, but now she seems to be experiencing more pain instead of sleeping through it.
She was happy to hear the voices of her cousins, Cooper (7) and Oscar ("four-and-a-half", he would like you to know) last night. Because she was in isolation, they couldn't come into her room, and she was rolled onto her side looking away from the door when they arrived. However, when she heard "Hi Abbie!" she turned her head as far as she could to see them....love that! It was medicine for me to see my sister and her boys (and also a treat to chow down on yummy Vietnamese food they brought.)
In so many ways we were blessed through the challenge, and we are so thankful to be home. Your prayers paved the way and carried us along....bless you for that!
Tuesday, March 23, 2010
Not the Vacation We'd Planned
Spring Break...ahhh, our family's long-awaited time of refreshing and renewal in the mountains of Washington. We flew overnight on 3/19, with Abbie sleeping all the way, a blessed first. She always looks forward to laying in front of the fireplace, but by Saturday evening, her rosy cheeks told us we were overdoing it. We turned it off (yep, it's fake...but still enjoyable!), and thought nothing more about it after she seemed to cool down.
Sunday night I was up until 3:30 with her, managing her breathing. But, when I finally put her to bed she was off oxygen and looked peaceful. I was satisfied enough with her condition that I went snowboarding with the boys on Monday. When we returned home I found that her fever was breaking through Motrin, and her heart rate was very high. We'd been noticing that she'd been having a lot more dirty diapers in past few days, but they seemed normal otherwise. Then....PPPP.UUUUU. The odor changed significantly, and we thought we saw blood.
Looking at all this together we decided it was time to go the urgent care clinic in the small town nearby. They did a blood draw and found that Abbie's white count was over 23,000 (normal is around 7,000). The P.A. felt that she was fighting a major infection, and that to receive proper care we needed to take her to Seattle Children's, a 1.5 hour drive over the pass.
We were fortunate that both the weather and road were clear, and arrived at 11:30 pm. She was admitted this morning, and the attending physician feels strongly that she has a bacterial infection in her gut, we just don't know the type yet. E. Coli, Shigella and Salmonella top the list of suspects. We are awaiting culture results that should arrive tomorrow and will dictate the course of treatment, which varies widely for those three. Given what she's got brewing, she looks pretty good otherwise. She is very sleepy, and we are keeping her discomfort under control with Tylenol. Her respiratory system is thus far unaffected, praise God!
Genevieve, our precious Genevieve, is camping out here with me, while Ray returned to Cle Elum to be with the boys. As the three of us drove through the darkness with Abbie last night, I was praying, and reminding myself that the insistent grace of God allows me to live without fear. As we neared Seattle, I was deeply impressed that Abbie was being "sent" to this hospital -- not because she needed care, but for a larger purpose. Even in the darkest of times, a hint of God at work gives me a twinge of expectation and excitement. I wondered what He was up to.
I think I already have the answer. We were visited by a kind member of the hospital administration today, and when I mentioned my envy of their therapy pool, he responded by saying they are trying to really create a center of excellence for CP here, and have brought in a very talented woman from Denver Children's to head up the project. He said he would ask her to meet with me during our stay.
Just a few hours later, the doctor he had mentioned, a physiatrist, arrived at the room. She spent a very long time talking about all the aspects we manage, strategies to try, and things to balance. She also examined Abbie. What a precious gift it was to gain new insight from a different strand of experience! This has made this stay almost worth it. She mentioned how odd it is to have a girl who has experienced an injury profound enough to give Abbie such physical limitations while she still retains such cognitive abilities. I agree that Abbie is a rare jewel! I must admit that it did feel good to receive validation for all the hard work Abbie has done all these years. God is good...all the time!
Please, pray for our sweet girl: to overcome whatever bug has taken up residence (immediate eviction is warranted!!), for her comfort, for a release from the hospital and recovery in time for her to enjoy a little bit more time in the mountains, and for a smooth trip home. I am kind of dreading the long flight if we are still dealing with frequent, messy, stinky diapers. We will not be well-liked in that cabin, that is for sure!
But most of all, pray with thanksgiving for God's unceasing care, provision, and protection, and the incredible plan for Abbie that we see unfolding every day!
Sunday night I was up until 3:30 with her, managing her breathing. But, when I finally put her to bed she was off oxygen and looked peaceful. I was satisfied enough with her condition that I went snowboarding with the boys on Monday. When we returned home I found that her fever was breaking through Motrin, and her heart rate was very high. We'd been noticing that she'd been having a lot more dirty diapers in past few days, but they seemed normal otherwise. Then....PPPP.UUUUU. The odor changed significantly, and we thought we saw blood.
Looking at all this together we decided it was time to go the urgent care clinic in the small town nearby. They did a blood draw and found that Abbie's white count was over 23,000 (normal is around 7,000). The P.A. felt that she was fighting a major infection, and that to receive proper care we needed to take her to Seattle Children's, a 1.5 hour drive over the pass.
We were fortunate that both the weather and road were clear, and arrived at 11:30 pm. She was admitted this morning, and the attending physician feels strongly that she has a bacterial infection in her gut, we just don't know the type yet. E. Coli, Shigella and Salmonella top the list of suspects. We are awaiting culture results that should arrive tomorrow and will dictate the course of treatment, which varies widely for those three. Given what she's got brewing, she looks pretty good otherwise. She is very sleepy, and we are keeping her discomfort under control with Tylenol. Her respiratory system is thus far unaffected, praise God!
Genevieve, our precious Genevieve, is camping out here with me, while Ray returned to Cle Elum to be with the boys. As the three of us drove through the darkness with Abbie last night, I was praying, and reminding myself that the insistent grace of God allows me to live without fear. As we neared Seattle, I was deeply impressed that Abbie was being "sent" to this hospital -- not because she needed care, but for a larger purpose. Even in the darkest of times, a hint of God at work gives me a twinge of expectation and excitement. I wondered what He was up to.
I think I already have the answer. We were visited by a kind member of the hospital administration today, and when I mentioned my envy of their therapy pool, he responded by saying they are trying to really create a center of excellence for CP here, and have brought in a very talented woman from Denver Children's to head up the project. He said he would ask her to meet with me during our stay.
Just a few hours later, the doctor he had mentioned, a physiatrist, arrived at the room. She spent a very long time talking about all the aspects we manage, strategies to try, and things to balance. She also examined Abbie. What a precious gift it was to gain new insight from a different strand of experience! This has made this stay almost worth it. She mentioned how odd it is to have a girl who has experienced an injury profound enough to give Abbie such physical limitations while she still retains such cognitive abilities. I agree that Abbie is a rare jewel! I must admit that it did feel good to receive validation for all the hard work Abbie has done all these years. God is good...all the time!
Please, pray for our sweet girl: to overcome whatever bug has taken up residence (immediate eviction is warranted!!), for her comfort, for a release from the hospital and recovery in time for her to enjoy a little bit more time in the mountains, and for a smooth trip home. I am kind of dreading the long flight if we are still dealing with frequent, messy, stinky diapers. We will not be well-liked in that cabin, that is for sure!
But most of all, pray with thanksgiving for God's unceasing care, provision, and protection, and the incredible plan for Abbie that we see unfolding every day!
Wednesday, March 17, 2010
Neurodevelopmental Assessment
Abbie and I enjoyed a drive out to Waimanalo today, to see her neurodevelopmentalist, Linda Kane. Abbie last saw Linda back in September, when she assigned a whole new program that centered around rhythmic exercises that we dubbed her "dances." Soon after beginning the new program, Abbie's cognition (or perhaps just her expression of her cognition) shot through the roof. So, we were excited to see Linda today, and have her see in living color all the changes we've experienced.
As expected, it was a wonderful visit! I love getting black-and-white data to get a feel for how we are doing, especially when it is so positive. For example, Linda measured Abbie's visual reading comprehension to be 4.8, which means it equates to the eighth month of fourth grade. Woo-hoo. We felt that Abbie was ahead of her peers, but didn't expect that she is over a whole year ahead!!
We had her do the following word problem for Linda:
If you have one dime and the ice cream costs 25 cents, how much more money do you need?
Out of three choices (5, 10 and 15 cents) Abbie quickly chose 15 cents with both her arm and eyes. The other great thing about working this problem, is that Linda got to observe Abbie tracking with her eyes. We have been working on and waiting for that for SOOO long!
Her processing time has gotten much quicker, which we observed both in the academic areas, as well as moving her body on command. Plus, Linda just felt she look really, really great. I had to agree that it wasn't just the St. Patrick's green making her look like an angel!
We came away with a broadened program, some great academic advice, and a sense that all of this has been worth it. All the days of doing the program, all the times of getting back to it after we'd fallen away, all the days of reading, reading reading when we weren't sure if she was grasping it.
On the summary worksheet that I had to prepare prior to the appointment, I only put one comment in the "Questions and Concerns" section: "How to keep up with her!!!"
What a blessed challenge we have before us. God is good!
As expected, it was a wonderful visit! I love getting black-and-white data to get a feel for how we are doing, especially when it is so positive. For example, Linda measured Abbie's visual reading comprehension to be 4.8, which means it equates to the eighth month of fourth grade. Woo-hoo. We felt that Abbie was ahead of her peers, but didn't expect that she is over a whole year ahead!!
We had her do the following word problem for Linda:
If you have one dime and the ice cream costs 25 cents, how much more money do you need?
Out of three choices (5, 10 and 15 cents) Abbie quickly chose 15 cents with both her arm and eyes. The other great thing about working this problem, is that Linda got to observe Abbie tracking with her eyes. We have been working on and waiting for that for SOOO long!
Her processing time has gotten much quicker, which we observed both in the academic areas, as well as moving her body on command. Plus, Linda just felt she look really, really great. I had to agree that it wasn't just the St. Patrick's green making her look like an angel!
We came away with a broadened program, some great academic advice, and a sense that all of this has been worth it. All the days of doing the program, all the times of getting back to it after we'd fallen away, all the days of reading, reading reading when we weren't sure if she was grasping it.
On the summary worksheet that I had to prepare prior to the appointment, I only put one comment in the "Questions and Concerns" section: "How to keep up with her!!!"
What a blessed challenge we have before us. God is good!
Monday, March 15, 2010
He Sees
Abbie was our happy companion at Matt's wrestling banquet last night. Even though it was noisy with 300 people there, she did not want to have the cough (and suctioning) she desperately needed to clear her airway. She waited until we were on the way to the car to get it all out. It's interesting to me how in tune she is in social settings like the school meeting last Thursday, as well as the banquet.
After the banquet we went to pick Daddy up at the airport. She always gets special pleasure of being out and about at night (read: after bedtime), and was especially happy to have her Dad home.
Her body is doing wonderfully now after about a week of intense interventions. I noticed last week that it looked like she was getting a yeast infection, which told me that her overall body voltage was very, very low. We were also noticing that it was difficult to get her lower legs and feet to stay warm. Since this week was Spring Break at her school, I didn't have to worry about her being too "sick" to go to school. The quotation marks are because she didn't actually get sick, but the markers of the changes in her body can sure look like it. So, instead of being frustrated or worried, I just thought "Do what you know to do." Often I find it's not that I don't have answers, means, or methods, it's that I'm not executing them faithfully.
Lots of mucous and extra sleep later, her legs are now staying toasty warm, her muscle tone is significantly lower, and she is using her voice all the time...seriously, all the time!! It is so cute.
A friend sent me a YouTube link today to a video that certainly adjusted my perspective and refreshed my soul. If you are a parent toiling in what feels like invisibility, this one's for you!
The Invisible Woman
May we all find joy in our life's work, whatever it may be, knowing that all is seen by the One who loves you most!
After the banquet we went to pick Daddy up at the airport. She always gets special pleasure of being out and about at night (read: after bedtime), and was especially happy to have her Dad home.
Her body is doing wonderfully now after about a week of intense interventions. I noticed last week that it looked like she was getting a yeast infection, which told me that her overall body voltage was very, very low. We were also noticing that it was difficult to get her lower legs and feet to stay warm. Since this week was Spring Break at her school, I didn't have to worry about her being too "sick" to go to school. The quotation marks are because she didn't actually get sick, but the markers of the changes in her body can sure look like it. So, instead of being frustrated or worried, I just thought "Do what you know to do." Often I find it's not that I don't have answers, means, or methods, it's that I'm not executing them faithfully.
Lots of mucous and extra sleep later, her legs are now staying toasty warm, her muscle tone is significantly lower, and she is using her voice all the time...seriously, all the time!! It is so cute.
A friend sent me a YouTube link today to a video that certainly adjusted my perspective and refreshed my soul. If you are a parent toiling in what feels like invisibility, this one's for you!
The Invisible Woman
May we all find joy in our life's work, whatever it may be, knowing that all is seen by the One who loves you most!
Saturday, March 13, 2010
The Eyes Have It
We had a special visitor last week, who came bearing a beautiful bridge. She didn't lug steel girders up our front stairs, but she did carry some heavy-duty suitcases! Kristine is a representative of Tobii, which makes communication devices. She came to the house to trial a device with Abbie that allows her to make choices by just looking at the computer screen. How cool is technology??
I didn't get any video of the trial, but here is a YouTube link that shows something similar to what Abbie did:
http://www.youtube.com/watch?v=2i9-0Rd_r-g&feature=PlayList&p=B0899285A6E6AC80&playnext=1&playnext_from=PL&index=9
When Kristine first set the device in front of Abbie and told her to look at the screen, we didn't get much response to the basic start-screen. "Oh...duh!" said Kristine, switching to a different screen. "Abbie, I need you to find the puppies on the page, OK?" Wham-o! All she needed was the right motivation. It was amazing, encouraging, and thrilling to watch!
We were blessed to have Abbie's longtime speech therapist. Lisa, here to watch, along with her husband who works at the company bringing this device into Hawaii. At the end of the session, I was trying to contain my excitement, and remain rational and realistic. These devices cost as much as a new economy car, so I asked, "How well does she need to be able to use it during a trial to qualify to receive her own device?"
Lisa said she thought Abbie did pretty well, and was surprised at how far she has come with control of her body. "A year ago I would not even have thought an eye-gaze device was on the horizon for her. She can definitely do this!!" Hurrah for Abbie!
I suppose that trial underlines what we are seeing in general with Abbie these days. She is gaining more and more control of her body as time passes, especially when it comes to doing things on command. I mentioned her swallowing in the previous post, the device trial showed off her eye control, and today she shocked me with her arms.
Maria was here working with Abbie on the massage table, and I stepped into the other room to get some oils. When I returned Maria said, "OK , Abbie, show Mummy how you can move your arm." Right away I saw her hand lift up and I cheered. Maria gave me a look that said, "Shhhh...just wait." I kept encouraging Abbie and was excited when I could see daylight peeking under her elbow. Again, I started rejoicing, and got the same look from Maria. After a little more encouragement, Abbie's arm suddenly shot up off the table into midair. I was speechless. She then moved it around for quite a while. I am so excited for her when I see her body cooperating more easily, since she has long known WHAT she wants it to do, and is now figuring out HOW to make it happen.
She is also using her voice more and more. As her school speech therapist was peeking in on Abbie last week she said, "You know, she is using her voice a lot. Do you think we can use that for communication? Can she do it to answer questions?" At that time I said that her voice use was definitely volitional (on purpose and meaningful), but probably not at the point where she could do it on command. I now think she is quickly approaching that point.
She accompanied the twins and I to a meeting at school last night. Abbie used her voice to "comment" on what the speaker was saying at all the appropriate points...it was hilarious. When we were tucking her into bed that night Matt said, "You know Mom, we pray for Abbie to be healed every day, but it's been happening all along in tiny steps we can't really see. Look how much better she has already gotten!!'
We have been crying out to God intensely over these past weeks, mostly in praise, and the answers He has been providing humble us in their specificity, timing, and perfection. We are utterly blessed!
I didn't get any video of the trial, but here is a YouTube link that shows something similar to what Abbie did:
http://www.youtube.com/watch?v=2i9-0Rd_r-g&feature=PlayList&p=B0899285A6E6AC80&playnext=1&playnext_from=PL&index=9
When Kristine first set the device in front of Abbie and told her to look at the screen, we didn't get much response to the basic start-screen. "Oh...duh!" said Kristine, switching to a different screen. "Abbie, I need you to find the puppies on the page, OK?" Wham-o! All she needed was the right motivation. It was amazing, encouraging, and thrilling to watch!
We were blessed to have Abbie's longtime speech therapist. Lisa, here to watch, along with her husband who works at the company bringing this device into Hawaii. At the end of the session, I was trying to contain my excitement, and remain rational and realistic. These devices cost as much as a new economy car, so I asked, "How well does she need to be able to use it during a trial to qualify to receive her own device?"
Lisa said she thought Abbie did pretty well, and was surprised at how far she has come with control of her body. "A year ago I would not even have thought an eye-gaze device was on the horizon for her. She can definitely do this!!" Hurrah for Abbie!
I suppose that trial underlines what we are seeing in general with Abbie these days. She is gaining more and more control of her body as time passes, especially when it comes to doing things on command. I mentioned her swallowing in the previous post, the device trial showed off her eye control, and today she shocked me with her arms.
Maria was here working with Abbie on the massage table, and I stepped into the other room to get some oils. When I returned Maria said, "OK , Abbie, show Mummy how you can move your arm." Right away I saw her hand lift up and I cheered. Maria gave me a look that said, "Shhhh...just wait." I kept encouraging Abbie and was excited when I could see daylight peeking under her elbow. Again, I started rejoicing, and got the same look from Maria. After a little more encouragement, Abbie's arm suddenly shot up off the table into midair. I was speechless. She then moved it around for quite a while. I am so excited for her when I see her body cooperating more easily, since she has long known WHAT she wants it to do, and is now figuring out HOW to make it happen.
She is also using her voice more and more. As her school speech therapist was peeking in on Abbie last week she said, "You know, she is using her voice a lot. Do you think we can use that for communication? Can she do it to answer questions?" At that time I said that her voice use was definitely volitional (on purpose and meaningful), but probably not at the point where she could do it on command. I now think she is quickly approaching that point.
She accompanied the twins and I to a meeting at school last night. Abbie used her voice to "comment" on what the speaker was saying at all the appropriate points...it was hilarious. When we were tucking her into bed that night Matt said, "You know Mom, we pray for Abbie to be healed every day, but it's been happening all along in tiny steps we can't really see. Look how much better she has already gotten!!'
We have been crying out to God intensely over these past weeks, mostly in praise, and the answers He has been providing humble us in their specificity, timing, and perfection. We are utterly blessed!
Monday, February 22, 2010
BIg Gulps
Swallowing is one of those skills we take for granted, until it's lost and you realize how many precise functions make up this precious ability.
After her initial injury, Abbie had a trach placed in part because she did not have a good enough swallow to protect her lungs. With her trach tube in place, we began a therapy called Vital Stim, which strengthens and trains swallowing. She was progressing nicely, even though she did not find it a pleasant experience.
Then, we decannulated her. Getting rid of that tube was a huge victory, but the open stoma in her throat meant that she couldn't build up adequate pressure in her throat to produce good swallows. It seemed pointless to continue Vital Stim until her stoma closed. At the time I made that decision, I didn't know it would be a four year delay!
Abbie went for a Vital Stim evaluation last Friday, as part of the process to request authorization for a round of therapy. What a difference these years have made! Although we have not worked on oral eating while we've been so busy with other things, the progress was obvious.
Abbie will now swallow on command. This is huge because it allows us to involve her in the therapy -- she is not just surviving an hour with electrodes on her throat. She has begun to involve her lips in the movement, which is another big step. Most of all, we have been able to carry that hour of therapy into the days after, as I ask Abbie to practice her swallowing. She is rightfully proud of herself, and enjoys our enthusiastic responses to her efforts.
I am hoping that our request for this therapy will be approved. It's not so much that I'm anxious to transition Abbie to oral eating. That is definitely a "someday" goal, but for now I would be thrilled to strengthen her swallowing enough to prevent saliva from seeping down her throat, which then leads to frequent suctioning. Our life would be so different if that darn suction machine did not have to be such an ever-present companion!
Panda is becoming Abbie's little buddy. After a nice walk to the beach yesterday, his favorite place to lazily relax was right next to her, where she could put her hands in his coat and feel him breathing. What a pair!
Our current schedule, which has me at school the whole time Abbie is there, and then trying to fit the rest our life in to the other hours of the day is getting challenging. (Read: I am exhausted!) I am so happy to be there, and so thankful to be allowed to help, but we are searching for ways to find a balance so we all don't crash and burn. Right now, this is our biggest prayer request: stamina, discernment, and balance.
Two little personal notes: Thinking of you Cheshires - especially the kittens...our Father is ever near the broken-hearted.
And, R.I.P Oreo Sutton --- thinking of you guys as well.
May God bless you today!
After her initial injury, Abbie had a trach placed in part because she did not have a good enough swallow to protect her lungs. With her trach tube in place, we began a therapy called Vital Stim, which strengthens and trains swallowing. She was progressing nicely, even though she did not find it a pleasant experience.
Then, we decannulated her. Getting rid of that tube was a huge victory, but the open stoma in her throat meant that she couldn't build up adequate pressure in her throat to produce good swallows. It seemed pointless to continue Vital Stim until her stoma closed. At the time I made that decision, I didn't know it would be a four year delay!
Abbie went for a Vital Stim evaluation last Friday, as part of the process to request authorization for a round of therapy. What a difference these years have made! Although we have not worked on oral eating while we've been so busy with other things, the progress was obvious.
Abbie will now swallow on command. This is huge because it allows us to involve her in the therapy -- she is not just surviving an hour with electrodes on her throat. She has begun to involve her lips in the movement, which is another big step. Most of all, we have been able to carry that hour of therapy into the days after, as I ask Abbie to practice her swallowing. She is rightfully proud of herself, and enjoys our enthusiastic responses to her efforts.
I am hoping that our request for this therapy will be approved. It's not so much that I'm anxious to transition Abbie to oral eating. That is definitely a "someday" goal, but for now I would be thrilled to strengthen her swallowing enough to prevent saliva from seeping down her throat, which then leads to frequent suctioning. Our life would be so different if that darn suction machine did not have to be such an ever-present companion!
Panda is becoming Abbie's little buddy. After a nice walk to the beach yesterday, his favorite place to lazily relax was right next to her, where she could put her hands in his coat and feel him breathing. What a pair!
Our current schedule, which has me at school the whole time Abbie is there, and then trying to fit the rest our life in to the other hours of the day is getting challenging. (Read: I am exhausted!) I am so happy to be there, and so thankful to be allowed to help, but we are searching for ways to find a balance so we all don't crash and burn. Right now, this is our biggest prayer request: stamina, discernment, and balance.
Two little personal notes: Thinking of you Cheshires - especially the kittens...our Father is ever near the broken-hearted.
And, R.I.P Oreo Sutton --- thinking of you guys as well.
May God bless you today!
Wednesday, February 17, 2010
A Valentine's Day Surprise
For a sweetheart like Abbie, we wanted to do something very special on Valentine's Day. So, we got Kung Fu Panda. Nope, not the hilarious movie, but a real, live, snuggly one.
Now, our version does not live on bamboo, but rather dog food, treats and lots of love. Meet the newest member of our family:
Now, our version does not live on bamboo, but rather dog food, treats and lots of love. Meet the newest member of our family:
Our little Panda boy, who turned one the day after he came to us, is a Havanese. Hava-who?? That's what I asked when we first found this breed during an online search for breeders on Oahu raising hypoallergenic, non-shedding dogs.
Originating in Cuba, the the Havanese were the playmates of the children of the royal court in Havana. As I read the website (www.havanesehawaii.com), I thought, "this is too good to be true!"
"Extremely intelligent, loyal, very loving, playful and always eager to please. Nonshedding, hypoallergenic and odorless. A very people-oriented dog, they will follow their people around the house but are not overly possessive of them, showing no jealousy or aggression to other dogs, pets or humans"
Well, it is all true. He just could not be a better dog. When I introduced him to Abbie, she was laying on the floor. He got on his tummy and scooted his head onto her lap, splayed all his legs out to lay completely flat, and then held very, very still. He knew. I don't have any pictures of them together yet, because I have been facilitating their time together.
His hair feels like angora, so Abbie really enjoys petting him. He doesn't get skittish when she coughs, or even when she's suctioned. The first morning he was here, every time Abbie coughed in the other room he would stop what he was doing and alert, making sure that I heard what was going on.
Having Panda come to our home, all grown up and ready to just meld right into our family has been a real answer to prayer. We've wanted to get a dog for Abbie for a long time, but knew, given the demands of our daily life, that it would have to be exactly the right dog. None of this would have been possible without Pam and Richard, the breeders. Here they are with Matt, RJ and Panda.
RJ wanted to surprise Matt as well as Abbie, so Matt thought it was just a boring Sunday afternoon until a dog with a big red bow showed up.
That moment was a lot of fun! We feel very blessed to have him.
Abbie is back in school this week, and doing well. She's so excited that she's been wide awake when I go to her at 5am. We had a great Speech Therapy session at school, where the therapists identified some new switches to use, and new places to use them. I am excited for Abbie, as new doors open for her -- and, as always, incredibly proud of her.
May I ask you to pray for her body, as we attempt to get her weight-bearing again after her injury and illness? Please pray for soft muscle tone, proper leg rotation, and comfort in standing.
May God bless you today!
Thursday, February 11, 2010
What We Always Knew
I suppose it's not rare to have adolescent children look askance at their mothers every now and then; I often supply my sons with good reason. Last night was a great example. What should a 12-year-old think when Mom is just sitting quietly on the couch, working on the computer, when suddenly she is gasping, fluttering her hands beneath her watering eyes, and unable to speak in sentences?
My precious boys, though, do give me the benefit of the doubt. They at least ask "What's up?" instead of just collecting one more bit of evidence for the "Mom is Crazy" file. During this most recent episode, I just pulled Matt over to the computer, and had him begin reading this article:
I hope you will go read it, especially if you are a brain-injury family. Finally, FINALLY, there is a study to affirm what we have always known and said about our loved ones. They are in there!
The centerpoint of the article is a study using functional Magnetic Resonance Imaging (fMRI) with patients classified as "vegetative." What they found is "Human minds stripped of every other power can still control one last organ—the brain."
When they asked the patient to imagine doing certain acitivities, the appropriate area of the brain lit up, even if no outwardly-observable movement was created. The researchers were able to elicit answers to questions by asking the patients to think about playing tennis for “yes” and navigating through their town for “no” (since these thoughts light up different parts of the brain.)
The article speaks to “the mind using the brain as a communication device.” In other words, the idea that “Abbie” is not her injured brain, but rather the mind, soul and spirit that use that brain, has been affirmed.
Also affirmed is that our loved ones’ awareness and understanding cannot be measured by their outward actions or reactions. This should necessarily shift prevailing assumptions about brain injury survivors, their worth, dignity, and potential. The article called the patients “buried alive” inside paralyzed bodies. Can you imagine anything more scary or intolerable? Families have always known this, and thus have refused to give in, give up, or give out. If you were buried alive, wouldn’t you pray for someone to love you enough to keep digging?
I am also more hopeful that someday there will be technology allowing brain-injury survivors to communicate by using the only body part they can still control – the brain.
Hope abounds, and joy is ever-present. Abbie is overcoming a head cold and we look forward to being back in school next week. She has been working hard on memorizing Bible verses, and learning all the states and capitals.
What an amazing journey. God is good…..all the time!
Wednesday, January 27, 2010
Twists and Turns
I've waited over a week to write this update, to ensure the words would be issuing forth from a rational, rather than emotional, place.
As I've written, Abbie really enjoys school, and I felt her transition was going very well. The only glitch I sensed was that the staff was anxious to have me out of the classroom before they were prepared to safely handle Abbie. I worried that they did not yet know what they didn't know. I have never hoped more strongly to be wrong.
Alas, I was not. During the first in-school therapy session that I did not attend, Abbie's left femur was fractured, her left ACL was strained, as was the lumbar region of her back, as she was put into a twisting motion, while seated, that her body could not accommodate. A staff member indicated there had "been an incident" during therapy.
As I picked up Abbie to seat her in her wheelchair, she began to scream and cry. Blotchy face. Big fat tears. I had only seen Abbie like this once before, and I got the same sick feeling knowing that she had probably fractured one or both of her legs. I touched base with Ray and asked him to call ahead to the Kapiolani ER.
Lots of films and a few hours later we found that the injury was limited to her left side, and because the fracture was a spiral, it was more stable than a through-and-through. It is high up on her left leg, so the surgeon felt it was reasonable to give her a chance to heal without putting her in a dreaded spica cast. I am so grateful for that. We just have to be very aware of how we position and move her -- so far, so good. We will have follow-up Xrays on Friday, and hope to see healing well underway. Because Abbie's bones are so weakened, it does not take her long to get back to her baseline strength, which is a mixed blessing.
Because of the fracture she cannot bear weight for three weeks, so she will come out of this with even weaker bones as her bone density melts away. This is a definite concern as we plan her return to school.
Return to school??? Yes. Although many people we've talked to have advised to us to retain counsel, to consider legal action, or at the very least to throw a big huge fit, we don't see any of those contributing to a positive long-term solution for Abbie.
So, we had a meeting at the school on Monday which Ray and I both felt was productive. This injury is a game-changer and although, as Ray put it, we have no desire to be permanent helicopter parents, they are going to have to get used to me being there until WE determine it is safe for Abbie. There is a deep cultural bias against this within the Department of Education, but we have the great fortune of working with an outstanding principal whom we trust. We have confidence that we will be able to work through this. We have to.
On the upside, Miss Abbie has not been idle during this unplanned vacation. We've used it to address more items in her IEP. We've not worked on money very much, so we introduced that today. In two hours she went from identifying coins to doing story problems like:
"If the ice cream cone cost 25 cents, and you have one dime, how much more money do you need?"
We tried to trick her with this one:
"If the comb costs 15 cents and you have three nickels, how much more money do you need?"
She correctly chose zero! No tricking her!!
In all things there is a silver lining. I think Abbie has, unfortunately through pain and suffering, proven to the school that I am not an irrational, overprotective mom, but rather an experienced, wise advocate for her. I pray her sacrifice will be honored as we move forward.
We read our Psalms out of Abbie's "Discoverer's Bible" today, which is written at about the third-grade reading level. The simplicity of the language often sharpens the message. It was fitting that today we relished once again, in a fresh flavor, Abbie's touchstone verses:
Psalm 27:13-14
Here is something I am still sure of.
I will see the LORD's goodness
while I am still alive.
Wait for the LORD.
Be strong and don't lose hope.
Wait for the LORD.
As I've written, Abbie really enjoys school, and I felt her transition was going very well. The only glitch I sensed was that the staff was anxious to have me out of the classroom before they were prepared to safely handle Abbie. I worried that they did not yet know what they didn't know. I have never hoped more strongly to be wrong.
Alas, I was not. During the first in-school therapy session that I did not attend, Abbie's left femur was fractured, her left ACL was strained, as was the lumbar region of her back, as she was put into a twisting motion, while seated, that her body could not accommodate. A staff member indicated there had "been an incident" during therapy.
As I picked up Abbie to seat her in her wheelchair, she began to scream and cry. Blotchy face. Big fat tears. I had only seen Abbie like this once before, and I got the same sick feeling knowing that she had probably fractured one or both of her legs. I touched base with Ray and asked him to call ahead to the Kapiolani ER.
Lots of films and a few hours later we found that the injury was limited to her left side, and because the fracture was a spiral, it was more stable than a through-and-through. It is high up on her left leg, so the surgeon felt it was reasonable to give her a chance to heal without putting her in a dreaded spica cast. I am so grateful for that. We just have to be very aware of how we position and move her -- so far, so good. We will have follow-up Xrays on Friday, and hope to see healing well underway. Because Abbie's bones are so weakened, it does not take her long to get back to her baseline strength, which is a mixed blessing.
Because of the fracture she cannot bear weight for three weeks, so she will come out of this with even weaker bones as her bone density melts away. This is a definite concern as we plan her return to school.
Return to school??? Yes. Although many people we've talked to have advised to us to retain counsel, to consider legal action, or at the very least to throw a big huge fit, we don't see any of those contributing to a positive long-term solution for Abbie.
So, we had a meeting at the school on Monday which Ray and I both felt was productive. This injury is a game-changer and although, as Ray put it, we have no desire to be permanent helicopter parents, they are going to have to get used to me being there until WE determine it is safe for Abbie. There is a deep cultural bias against this within the Department of Education, but we have the great fortune of working with an outstanding principal whom we trust. We have confidence that we will be able to work through this. We have to.
On the upside, Miss Abbie has not been idle during this unplanned vacation. We've used it to address more items in her IEP. We've not worked on money very much, so we introduced that today. In two hours she went from identifying coins to doing story problems like:
"If the ice cream cone cost 25 cents, and you have one dime, how much more money do you need?"
We tried to trick her with this one:
"If the comb costs 15 cents and you have three nickels, how much more money do you need?"
She correctly chose zero! No tricking her!!
In all things there is a silver lining. I think Abbie has, unfortunately through pain and suffering, proven to the school that I am not an irrational, overprotective mom, but rather an experienced, wise advocate for her. I pray her sacrifice will be honored as we move forward.
We read our Psalms out of Abbie's "Discoverer's Bible" today, which is written at about the third-grade reading level. The simplicity of the language often sharpens the message. It was fitting that today we relished once again, in a fresh flavor, Abbie's touchstone verses:
Psalm 27:13-14
Here is something I am still sure of.
I will see the LORD's goodness
while I am still alive.
Wait for the LORD.
Be strong and don't lose hope.
Wait for the LORD.
Monday, January 11, 2010
A Frostie
"Whose woods these are, I think I know.
His house is in the village, though.
He will not see me stopping here,
To watch his woods fill up with snow."
-- Robert Frost
These are the first four lines of the poem we introduced to Abbie last Wednesday. They are also the lines she memorized over the weekend. How do we know this? Rae figured out a way for her to prove what we suspected she'd already learned.
Rae wrote half of each line on an index card, she then put three of the cards on the board. Without reading the choices to her, Rae would ask Abbie, "What comes next." She didn't miss once. So, not only was she able to read the cards, written in ballpoint pen at a normal size, but she was able to correctly sequence the lines. Not bad for three days' work!!
We thought we would show this to her teacher today, and this opened my eyes to the challenges ahead, which are surmountable but present. Abbie was taking longer to answer, and we finally figured out that much of it had to do with her positioning. Because she cannot adjust her own body very well, if she is not in a position that makes it easy to use her switch, she is not able to activate it. She still did OK, though. I am just hoping that when she takes a while to answer questions or do her board work the bias will become "what is preventing her from using her switches?" rather than "she is not understanding this" or "she takes a really long time to think."
We've become very adept at making it as easy as possible to communicate, but they've asked me now to step back and allow them to take the lead. I am biting my cheek as I type, hoping it will stimulate the right words to describe how I feel about that....scared, excited, nervous, hopeful, wary, trusting..it changes from one moment to the next. But, I do feel that this is the next step in Abbie's Grand Adventure with God, and if nothing else, I trust in Him and in my girl who outdoes expectations at every turn.
One other little "peek behind the curtains." We've been meeting with dizzying numbers of people in recent weeks to determine and coordinate the appropriate services for Abbie. This being a public site, any and all are welcome. However, it turns out that some in our service net read Abbie's website to determine what kinds of services she needs...I am not sure who, but the word we've recently received is that because, according to this blog, Abbie has gotten so much better, we should be prepared for less services.
Ray's eyebrows rising to meet his hairline is fair warning that steam will be erupting from his ears in short order. The above situation elicited that look, and he curtly asked me to leave the room so he could set the record straight. I knew what he was going to say, so I politely declined to leave, and spoke on my own behalf. He was going to tell them that I focus on the positive, the hopeful and the good and that doing so is essential to my survival through all of this. His point may be valid, but I boiled it down to "we choose to make our victories and progress public, while keeping the challenges and struggles a bit more private" (except for now, apparently!)
For whoever is using this blog as an assessment tool...first off, shame on you -- there is a reason we fill out so much paperwork and and coordinate with so many people. This blog is for family, friends, and fellow trekkers. These people deserve to hear how wonderful our little girl is doing without the continual layering-on of the reality of life with a brain injury... we never get a full night of sleep; we are constantly battling her body to keep it from contracting, from being injured or requiring more surgery; her respiratory status requires constant vigilance; caring for her is the most demanding thing any of us has ever done. Unless you have walked a mile, or a day, in our shoes you cannot understand. That is part of the reason we don't prattle on about it....those who've not been here can't comprehend, and those who have don't need the explanations.
Whew -- I think that qualifies as a rant. I apologize, but I guess it's reality. Abbie's soaring cognition is one precious aspect of her life, but the things listed above are always in play as well. We could really use your prayers for those areas - particularly about keeping her body as limber, aligned and functional as it can possibly be.
Back to our Little Miss, who has become so enthralled with not only "Stopping by the Woods on a Snowy Evening", but also other works of Mr. Robert Frost (as we call him), that I am now calling her my Little Frostie. In fact, in her honor, I will close with his sublime words, as they seem so fitting on a busy night:
"The woods are lovely and dark and deep,
But I have promises to keep.
And miles to go before I sleep.
And miles to go before I sleep."
May God bless you!!
His house is in the village, though.
He will not see me stopping here,
To watch his woods fill up with snow."
-- Robert Frost
These are the first four lines of the poem we introduced to Abbie last Wednesday. They are also the lines she memorized over the weekend. How do we know this? Rae figured out a way for her to prove what we suspected she'd already learned.
Rae wrote half of each line on an index card, she then put three of the cards on the board. Without reading the choices to her, Rae would ask Abbie, "What comes next." She didn't miss once. So, not only was she able to read the cards, written in ballpoint pen at a normal size, but she was able to correctly sequence the lines. Not bad for three days' work!!
We thought we would show this to her teacher today, and this opened my eyes to the challenges ahead, which are surmountable but present. Abbie was taking longer to answer, and we finally figured out that much of it had to do with her positioning. Because she cannot adjust her own body very well, if she is not in a position that makes it easy to use her switch, she is not able to activate it. She still did OK, though. I am just hoping that when she takes a while to answer questions or do her board work the bias will become "what is preventing her from using her switches?" rather than "she is not understanding this" or "she takes a really long time to think."
We've become very adept at making it as easy as possible to communicate, but they've asked me now to step back and allow them to take the lead. I am biting my cheek as I type, hoping it will stimulate the right words to describe how I feel about that....scared, excited, nervous, hopeful, wary, trusting..it changes from one moment to the next. But, I do feel that this is the next step in Abbie's Grand Adventure with God, and if nothing else, I trust in Him and in my girl who outdoes expectations at every turn.
One other little "peek behind the curtains." We've been meeting with dizzying numbers of people in recent weeks to determine and coordinate the appropriate services for Abbie. This being a public site, any and all are welcome. However, it turns out that some in our service net read Abbie's website to determine what kinds of services she needs...I am not sure who, but the word we've recently received is that because, according to this blog, Abbie has gotten so much better, we should be prepared for less services.
Ray's eyebrows rising to meet his hairline is fair warning that steam will be erupting from his ears in short order. The above situation elicited that look, and he curtly asked me to leave the room so he could set the record straight. I knew what he was going to say, so I politely declined to leave, and spoke on my own behalf. He was going to tell them that I focus on the positive, the hopeful and the good and that doing so is essential to my survival through all of this. His point may be valid, but I boiled it down to "we choose to make our victories and progress public, while keeping the challenges and struggles a bit more private" (except for now, apparently!)
For whoever is using this blog as an assessment tool...first off, shame on you -- there is a reason we fill out so much paperwork and and coordinate with so many people. This blog is for family, friends, and fellow trekkers. These people deserve to hear how wonderful our little girl is doing without the continual layering-on of the reality of life with a brain injury... we never get a full night of sleep; we are constantly battling her body to keep it from contracting, from being injured or requiring more surgery; her respiratory status requires constant vigilance; caring for her is the most demanding thing any of us has ever done. Unless you have walked a mile, or a day, in our shoes you cannot understand. That is part of the reason we don't prattle on about it....those who've not been here can't comprehend, and those who have don't need the explanations.
Whew -- I think that qualifies as a rant. I apologize, but I guess it's reality. Abbie's soaring cognition is one precious aspect of her life, but the things listed above are always in play as well. We could really use your prayers for those areas - particularly about keeping her body as limber, aligned and functional as it can possibly be.
Back to our Little Miss, who has become so enthralled with not only "Stopping by the Woods on a Snowy Evening", but also other works of Mr. Robert Frost (as we call him), that I am now calling her my Little Frostie. In fact, in her honor, I will close with his sublime words, as they seem so fitting on a busy night:
"The woods are lovely and dark and deep,
But I have promises to keep.
And miles to go before I sleep.
And miles to go before I sleep."
May God bless you!!
Wednesday, January 06, 2010
First Day of School
I know, I know...this post should certainly start with the requisite first day of school photo! It was raining today, so our normal photo-op spot was unusable. Once we stepped foot on campus, the whirlwind began, and although I did pack my camera along, it never made it out of the bag. We'll try again tomorrow.
Miss Abbie was awake at 5:30, all grins and giggles, with anticipation gleaming in her eyes. This day was finally, truly here! As silly as it sounds, it was an all-out sprint from 6am on to get the boys out the door, and then get her fed, changed, dressed and ready to get out the door by 8:15.
I wanted to dress her in one of her pretty outfits -- you know, "matchy-matchy" from the socks to the hair ribbons. However, I pushed pause on the "Mommy Plays Dress-Up" game long enough to think about what an average third-grade girl would want to wear on the first day of school. Jeans it was. Of course, she rolled to the van looking stylish anyway (and yes, her ribbons did match her shirt...I cannot help myself). Unfortunately, all the lead-up excitement had pooped her out, and she fell asleep during the drive.
She opened her eyes briefly when we arrived, but then proceeded to nap deeply for the next hour. I didn't have time to be too disappointed because so many staff members were in the classroom to greet and work with Abbie on her first day. Speech, vision, public health nursing....I felt like I was the pinball pinging between questions and conversations. But, it was all fruitful, and I was grateful to have their input from the beginning.
At last, around 10 Abbie really woke up, so I suggested we start the academic portion of her day. Woo-hoo, was she on today!!! We are using the same literature-based program we've used at home, and the book we've selected for this month is a book of illustrations accompanying Robert Frost's "Stopping by the Woods on a Snowy Evening." She was so intent on the words and illustrations, and vocalized quite a bit in response to questions and observations. The aides could already see that she was intellectually and visually engaged. One of them did give me a look of surprise, though, when I mentioned that one of Abbie's tasks during this unit will be to memorize the poem. I think she'll be even more surprised when she sees how fast Abbie will accomplish this.
After we were finished with language arts, we moved to math. Because her IEP goals were written quite a while ago, she is now way beyond them. I am thankful God dropped just the right word into my mouth to explain and justify to her why she was going to have to do such easy things.
" Abbie, at the beginning of the school year everyone -- your brothers, your friends, your classmates -- they all do something called 'review'. Review covers things you already learned, and are easy for you, but you still have to show your new teachers that you know them. So, today we are going to review your numbers and adding 1"
While this did help her be patient, I have to admit that she got irritated by being asked to identify numbers between 0 and 31. It reminded me of how aggravated she used to get when I kept making her go through the alphabet. But, she complied and showed them she knows the numbers . We then had her do 7+1, which did not take her long. Because she was getting impatient, we then let her do something like 9-3+1, which made her happier but did not take her long to answer. Finally, we did let her do one multiplication problem, even though it's not in her IEP. 6x3 did not take her long either.
We did some calendar work, and she was quickly able to pick out 2010 as the correct year, even though her choices were 2009, 2010, and 2011. Every time the aide or I thought something might be too hard, I just said, "let's see what she does"....she succeeded every time.
We did have a little meeting mid-morning to deal with some miscommunications regarding nursing. The resolution means that Abbie will be staying at school until 1, instead of 12. I think this will be a good thing for her, because it means more time to work when she's really awake and ready to go.
She glowed with contentment when we arrived home. Then, I said the magic words, "Abbie, you get to go to school again TOMORROW!!" She grinned, as if it were too good to be true. What a precious angel. I am so excited about what new levels she's going to be able to reach with a whole academic team supporting her. Her life just got a lot bigger today, and her spirit is soaring in all that new space.
Miss Abbie was awake at 5:30, all grins and giggles, with anticipation gleaming in her eyes. This day was finally, truly here! As silly as it sounds, it was an all-out sprint from 6am on to get the boys out the door, and then get her fed, changed, dressed and ready to get out the door by 8:15.
I wanted to dress her in one of her pretty outfits -- you know, "matchy-matchy" from the socks to the hair ribbons. However, I pushed pause on the "Mommy Plays Dress-Up" game long enough to think about what an average third-grade girl would want to wear on the first day of school. Jeans it was. Of course, she rolled to the van looking stylish anyway (and yes, her ribbons did match her shirt...I cannot help myself). Unfortunately, all the lead-up excitement had pooped her out, and she fell asleep during the drive.
She opened her eyes briefly when we arrived, but then proceeded to nap deeply for the next hour. I didn't have time to be too disappointed because so many staff members were in the classroom to greet and work with Abbie on her first day. Speech, vision, public health nursing....I felt like I was the pinball pinging between questions and conversations. But, it was all fruitful, and I was grateful to have their input from the beginning.
At last, around 10 Abbie really woke up, so I suggested we start the academic portion of her day. Woo-hoo, was she on today!!! We are using the same literature-based program we've used at home, and the book we've selected for this month is a book of illustrations accompanying Robert Frost's "Stopping by the Woods on a Snowy Evening." She was so intent on the words and illustrations, and vocalized quite a bit in response to questions and observations. The aides could already see that she was intellectually and visually engaged. One of them did give me a look of surprise, though, when I mentioned that one of Abbie's tasks during this unit will be to memorize the poem. I think she'll be even more surprised when she sees how fast Abbie will accomplish this.
After we were finished with language arts, we moved to math. Because her IEP goals were written quite a while ago, she is now way beyond them. I am thankful God dropped just the right word into my mouth to explain and justify to her why she was going to have to do such easy things.
" Abbie, at the beginning of the school year everyone -- your brothers, your friends, your classmates -- they all do something called 'review'. Review covers things you already learned, and are easy for you, but you still have to show your new teachers that you know them. So, today we are going to review your numbers and adding 1"
While this did help her be patient, I have to admit that she got irritated by being asked to identify numbers between 0 and 31. It reminded me of how aggravated she used to get when I kept making her go through the alphabet. But, she complied and showed them she knows the numbers . We then had her do 7+1, which did not take her long. Because she was getting impatient, we then let her do something like 9-3+1, which made her happier but did not take her long to answer. Finally, we did let her do one multiplication problem, even though it's not in her IEP. 6x3 did not take her long either.
We did some calendar work, and she was quickly able to pick out 2010 as the correct year, even though her choices were 2009, 2010, and 2011. Every time the aide or I thought something might be too hard, I just said, "let's see what she does"....she succeeded every time.
We did have a little meeting mid-morning to deal with some miscommunications regarding nursing. The resolution means that Abbie will be staying at school until 1, instead of 12. I think this will be a good thing for her, because it means more time to work when she's really awake and ready to go.
She glowed with contentment when we arrived home. Then, I said the magic words, "Abbie, you get to go to school again TOMORROW!!" She grinned, as if it were too good to be true. What a precious angel. I am so excited about what new levels she's going to be able to reach with a whole academic team supporting her. Her life just got a lot bigger today, and her spirit is soaring in all that new space.
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