Sunday School

Today Abbie went to Sunday School for the first time since the day before her injury. My sweet friend, Kathleen, recently learned how to care for Abbie so she could stay with her while we were at Disneyland. Kathleen brings Kyle and the twins home from school every day, so one day this week she mentioned she’d like to take Abbie to Sunday School during second service. I was so excited for Abbie to be together with kids again, and programmed her switch with some important messages, hoping that she’d use them.

Right now the second service Sunday School time is dedicated to preparing for the Christmas musical, so I knew Abbie would love being in the midst of the singing. I recorded, “I can’t wait to hear you sing again.”, and Kathleen reported that when the kids finished a song, Abbie hit her switch to play that message. She also said that when she introduced Abbie to the kids, many of whom did not know her before, Abbie used her switch to say “Hi! My name is Abbie!” I program the messages in sequential order, so Abbie doesn’t have too much control over which message plays when she hits her switch. I think God orchestrated things just right for her today so that the kids could recognize there is a smart, friendly little girl in that purple wheelchair.

Abbie also made a little star ornament this morning, with Auntie Kathleen helping her color it. It brought tears to my eyes because I so vividly recall the Sunday School craft Abbie made the day before she got hurt…the construction flower lei that she let me wear to lunch after church. It is sweet for me to see her doing some things she enjoys again, even if she has to do them a bit differently for now.

Our family was blessed that while Abbie was enjoying her time with the kids, the rest of us were able to be together in the service and really focus on the message. It was an important one for me to hear today, and proof that even the most obscure people can teach us meaningful lessons. Pastor McDaniel started off by asking if any of us knew who Shamgar was. To me he sounded like the Viking cousin of Scooby-Doo’s buddy, but he was actually one of David’s mighty men who served as a judge during a critical time in Israel’s history.

The entire commentary about Shamgar takes one verse, Judges 3:31, “After Ehud was Shamgar son of Anath, who slew 600 Philistine men with an oxgoad. He also delivered Israel.”

How much can one draw from that tiny verse? With just a little digging there is a gold mine to be had. You have to know that an oxgoad, as may be apparent from the name, was not a weapon of war but rather a 6 to 10 foot long wooden stick with an implement on the end normally used for sharpening plows. I thought a lot today about Shamgar, slaying 600 Philistines with a farming tool. I wondered if sometimes he wished he had a sword instead. I wondered if after Philistine #495 he got weary and discouraged. I wondered if he ever asked God “How much longer, ” and “How many more can there be to come against me?”

If he did, I can really relate to him. After a wonderful booster like Abbie’s enjoyment of Sunday School, this day has still ended in some weary tears. I feel like I am trying to fight a battle with the wrong tools most of the time. I know there is a race marked out for us, which implies a finish line, but I am tired. I do not want to quit when we may be all the way up to Philistine #552, and as I was praying through this I heard those very familiar words, “My grace is sufficient for thee.” Comforting and challenging at the same time.

Ray has been a hero this weekend — we had an event Friday night at the hotel just down from our house. He rented a room, tucked me into bed for a full night’s sleep, and then came home to watch Abbie. I awoke to room service breakfast that included an enormous bowl of fresh berries, my absolute favorite treat. I was a new person. I guess, tonight, he and I are both a little discouraged that that wonderful recharge wore off so quickly. Please pray for our endurance and our faith…not in God, for that is unwavering, but rather the faith that we will walk this all the way to the end without faltering.

I’m sure much of interest happened in Shamgar’s life, but yet it boiled down to “he slew 600 and delivered Israel.” I wait in anticipation of the day when Abbie’s story will be as concise, “She got hurt, God healed her and his Name was glorified. The End”

Test Results

We went to the endocrinologist first thing this morning to discuss Abbie’s recent blood tests and Xray, which were ordered to determine if precocious puberty has begun, and how far she has progressed into it.

I was most concerned about the Xray, since it would tell us her bone age, thereby telling us roughly how many more years of growth she has left. I was praying to hear “8 or 9″ and not “13 or 14″. Because brain injuries predispose kids to precocious puberty, I would’ve been satisfied to hear we were just in the early stages of it. I was in no way prepared to hear what Dr. U. told us. He pulled out the results and explained that there is a two-standard deviation range, which equals about 1 year in Abbie’s case, but given that, the radiologist felt that her bones are roughly equivalent to those of a five-year-old. FIVE!!! I started laughing with delight. Her bone age is totally normal. Praise God, praise God, praise God!!

We then went through the results of the blood tests, which focused on hormones related to puberty. They were all within the normal range. These results were correlated to something called the “Tanner Scale” which is used to measure stages of puberty. Abbie was at a Tanner Scale 1, the lowest level, for each hormone! Another hallelujah!

The cherry on top was her thyroid results. I had assumed she was hypothryoidic because of her low voltage. Her free T4 is normal and her TSH is on the low side, but within the normal range. WOW! I thought back to the timing of her blood test and realized we drew it just about the same time we were seeing her voltage really rise. So interesting to see objective data, like the MEAD numbers and blood tests, correlate and point to her marked improvement!

Dr. U. is a terrific physician, who really took time to explain and discuss not only these results, but the future plan for Abbie. We will repeat the labs and Xray in 6 months, just to stay on top of things. I told him, “We are not used to getting such great test results. This is a day to savor!!”

Thank you for your prayers, specifically about the Xray. Our future ballerina still has many years to grow!!

Flying

Even after two years I continue to be amazed at the creativity of Abbie’s therapists. Today they got out a bright fuschia colored “sling swing” for her PT/OT session. We have used this before, but never like we did today. We laid the lycra swing fabric on a big wedge mat, then laid Abbie on the fabric in the prone position. After cinching up the swing Abbie looked like Supergirl, flying through the air with the greatest of ease. It was fun for her, and I really enjoy chances to watch her having fun.

After a twirl at flying, we did some more exciting things. We used the swing to support most of her body weight, which allowed us to get Abbie on her hands and knees. She amazed us as how relaxed each of her limbs were. Her knees were bending past 90 degrees while her arms stretched out to the floor as her soft hands touched the mat. She did so well we practiced crawling motions while she was suspended. This makes sense because she doesn’t really have the strength yet to support her entire body weight, so when she is asked to she becomes tense under the pressure and strain. Without the requirement to bear all her weight she was able to relax and enjoy the movements.

The past couple of days have tested my commitment to reinforcing her language opportunities. I’m talking about Abbie having her switch at night. It has been a blessing to have her tell me when she is cold, wet, uncomfortable, needs to cough or even bored. However, it has not been conducive to great sleep. Last night I finally had to tell her, “Abbie, I am going to sleep. You have a new diaper, you are all comfy and warm, and Mommy is tired. If I hear your switch I won’t be coming again.” It took about six hits on her switch for her to believe that I really wasn’t going to respond, and then she fell back to sleep. I smiled under the covers though, with how reminscent it was of toddler bedtime battles.

She is so “with it” now, that every interaction is a joy and filled with anticipation. Hearing her little voice as she was “crawling” today, with differing inflections, tones and the sweetness that has been missing for so long erased all the fatigue of sleepless nights. What we really need prayer for now are our own stamina and imagination, as we seek new ways to keep pushing her and new ideas to bring joy to her life.

The Princess Calls

Friday’s speech group really motivated me to find every way possible to provide language opportunities for Abbie. This means that I will now program her switch so that she can check herself in to every appointment and therapy session, for example. It also means that we keep the switch in her hand all day. As I was putting her to bed tonight, I thought, “Why stop there? Why not let her have her switch at night?” I couldn’t think of too many things that would be more motivating than to be able to call me to her bed if she wanted or needed me.

So, I programmed in two messages: “Mommy, I need you!” and “Mommy, could you come here, please?” I tucked her in, put the switch in her hand and told her that if she needed me, she could call me. I didn’t even get a chance to step away from the bed before she took me up on the offer. I laughed and was happy she’d caught on so quickly. That happiness continued over the next 30 minutes as she called me about 15 times. Sometimes she needed to cough and wanted to be sure I was there to help or clean it up. Other times she just wanted to chat. Putting myself in her shoes, it is a basic necessity to be able to call someone when you can’t get out of bed…I don’t know why it took me so long to think of this.

We saw another new skill today. I was putting her on her tummy, and she was doing a good job holding herself up on her elbows, which isn’t new. She held her head off the floor, which also isn’t new. What was surprised us was watching her lift her head until she was looking straight forward. I haven’t really seen her be able to hold that position since just a couple months after her injury when she was using her high tone instead of her own strength. Another glimpse into the wonderful things happening in Abbie’s body and brain right now.

TGIF!

The end of a long but good week. Our angel of a nurse, Debbie, showed up for work two hours early because I “looked so sick” when she left yesterday. I almost cried with relief and gratitude. I had pushed it a couple days too far on the “no-sleep” front, and my body was collapsing yesterday. I got some rest yesterday and today and feel much better now.

I love going to PT when Lynette makes comments that match what we are seeing at home. She was bouncing Abbie on a ball and looked up at me in surpise, saying “Her spine is so straight now! There’s no curve any more!” I laughed and nodded, and told her that Abbie is now a “29”!! We are also noticing that her troublesome left arm is relaxing and straightening out, and the range of motion in her ankles is better than it’s ever been even though she hasn’t been wearing orthotics since she was burned. God is at work! The blessing is that I am watching things change that we haven’t been working on, which lifts such a tremendous burden from my shoulders. Any mom of a challenged child will tell you that there is never a night when you go to bed feeling you have done enough, and that’s certainly how I feel. God is reminding me again that he doesn’t need me to aid him in Abbie’s healing, He is simply allowing me the privilege of joining in this adventure.

At her speech group today there was a special treat – Lisa, our therapist, brought her 12-week-old Yorkshire Terrier, Mara. The kids LOVED her, but I’m not so sure Mara was as enthusiastic. Abbie hit her switch innumerable times to say “I want to see Mara” and had wonderful soft hands and arms to pet her with.

I took the boys out for an errand tonight and returned to see Ray sitting in the family room with a visitor. We weren’t expecting anyone, and I didn’t recognize him from the back. Once we got inside I realize we had a special guest…Darrell from our PICU days. Darrell was a friend of a friend when Abbie got hurt, and came to the PICU for the first time with our mutual friend. After that he began showing up at midnight, saying “You should go get something to eat.” Since I did the nightshift with Abbie, those midnight hamburgers were a lifesaver. He soon made a routine of coming at midnight and staying until around 4am. At the time he was a grad student and said simply, “You need help, and I’m able to be here…” What a blessing! We hadn’t seen Darrell in almost 18 months, during which time he joined the Marine Reserve, went to Boot Camp and training and is now preparing for Officer Candidate School, with a Flight School follow-on. I was excited to hear that the plans we’d discussed in the wee hours had materialized! I was also excited to hear his reaction to Abbie, “Wow! The changes are so drastic since I haven’t seen her in a while!” Love that!! She was talking with her switch and making lots of facial expressions for him. When I said that with her switch we’ve been able to confirm that she’s cognitively intact he said, “Yea, isn’t that what we were all saying from day 1?”

As I watched Darrell leave I was again overwhelmed by just how many hands have lifted us through this journey, and how our hearts will be bound to theirs forever.

Voltage Update

My laptop is funtional again, allowing us to do a much overdue check on Abbie’s voltage today. I repeated the test three time to confirm the results because I was so surprised. Her overall voltage is at 29!!! Much more than I had hoped to see, and proof that the new diet’s effects are kicking in just when they were supposed to.

This increase corresponds very well with changes we are seeing in Abbie. I had her sitting on a ball today and no matter which direction I moved her or how much I bounced, she kept her head and trunk solidly in line. We have also noted that the spine we were getting concerned about has straightened out nicely…no curvature to be seen.

It also deepened my suspicion on another front. Last night she was having a tough time breathing at bedtime. It took two liters of O2 to keep her at 95, but her chest sounded fine. I was up with her pretty much the whole night, and it really seemed that instead of being congested, she was actually too dry. Repetitive shots of nasal saline really helped, and by morning she was off oxygen, satting at 98. I know that raw milk can aid in resolving allergies, and I wondered if that might be what is going on with Abbie. I gave her Zyrtec with her last feed, and last night, within an hour or two of that dose, her breathing trouble started. It may be that she doesn’t need it anymore, and giving it to her anyway is drying her out too much. The excellent voltage readings reinforce my thoughts that perhaps it is time to stop Zyrtec and see what happens.

Step by step, bit by bit…I told her we’ve got 10 months to get her ready for the promised purple two-wheeler.

All is Well

We were shaken out of bed on Sunday morning to begin a day that turned out much differently than we had planned. I was living in Santa Clara, CA during the big 1989 quake, and when I felt the ground move on Sunday I knew it was also a big one.

Fortunately, we were far enough away from the epicenter that nothing actually fell down or broke. The one house you probably saw over and over again with the destroyed chimney belongs to the family of one of Kyle’s classmates, but other than that house Oahu was pretty much spared from direct earthquake damage. The power was a whole different story…

As the parent of a medically fragile child it quickly becomes apparent how dependent we are on electricity. The oxygen concentrator, the pulse-oximeter, the suction machine…things we depend on every day were suddenly completely out of commission (the concentrator) or on very limited battery power (pulse-ox and suction). I quickly made Abbie’s food for the day and packed it in a cooler with ice packs. We then made the freezer and fridge totally off limits. Well, first we got out the left-over pizza and heated it up on the barbeque for breakfast. I wanted to do whatever I could to save the 5 gallons of raw milk we’d just received for Abbie.

She has been on and off oxygen since we got back from Disneyland, requiring lots of suctioning some days and not so much on others. Praise God that she chose to have a very good breathing day on Sunday. We were able to just spot check her stats with the pulse-ox to save the battery, and didn’t have to use the rest of the limited tank oxygen we had on hand. As the day wore on her biggest challenge was the heat. Thankfully it was an overcast day, but the humidity was around 85%. We gave her extra water, cooled her with washcloths and she hung in there like a trooper.

Her brothers rediscovered Monopoly and playing outside. They enjoyed themselves so much they said it ‘d be great to have power for the fridge and stove but that we didn’t really need the TV and computer. Amen to that!

Ray’s day was filled with running between the three Oahu hospitals he oversees. Obviously it is a challenge to maintain patient care and services with limited generator power, but he is blessed to have many outstanding people working for him — they put in a herculean effort on Sunday, and things went as smoothly as could be hoped for. It made it a little tough on me to deal with the boys and Abbie by myself, but there is always a silver lining. At one point in the afternoon he brought home some hot food from the hospital cafeteria. This pre-empted the major challenge with four boys, no power and an off-limits fridge…their hunger!

We had just gotten everything all set for the night as the last of the light was disappearing outside, when in an instant we were back into the 21st century with lights and A/C at our service. Finally we could see the news and find out what was going on around the state. We are so fortunate that a quake of this magnitude didn’t result in any deaths or serious injuries.

Power was on to most of Oahu by midnight, although the boys held out hope that Manoa was still dark so that school would be closed on Monday…no such luck. Life is back to normal now. Abbie had a great PT/OT session on Monday, and did HBOT today. On the way home, past the port, Debbie asked her where the boats were. Without any hesitation she turned her head to look out the window at them. Things like that make me smile!

Her burn is all closed now, so we are able to put her back in the tub, to her great satisfaction. We have committed to working in her neurodevelopmental program during the day, and she seems to like it (most of the time).

I owe so many people emails since 3 of the boys were home the last two weeks, and RJ has been sick so far this week…I will get them out as soon as I can, just know that I am thinking of you!

A New Doctor

We met a new partner on our journey today, Dr. U. is a pediatric endocrinologist who we visited to discuss possible hypothyroidism and precocious puberty. I am less concerned lately about her thyroid, because I’ve come to understand that, like everything else, this gland’s function is dependent on proper voltage. There are three critical minerals the thyroid only absorbs in a very narrow pH (or voltage) range. Since I know that Abbie is not yet in that range, I know she is not adequately absorbing these minerals and is thus hypothyroidic. I believe this will be resolved once we get her voltage up. The more nagging concern is the possible onset of early puberty. Part of me doesn’t want to write about this, to protect Abbie, but part of me knows there may be other brain injury families reading this, so for them I will be open about this new concern.

Dr. U. explained that the body always wants to go into puberty but a healthy neurological system is able to suppress this until the proper time. Any neurological issues, such as a head injury, a seizure disorder, or a tumor can alter the suppression ability, allowing the body to prematurely enter puberty. The pituitary gland, located in the brain, is responsible for the production of many hormones, some of which play into puberty. Because of Abbie’s injury she is predisposed to “precocious puberty” and lately we have been seeing some signs that this may be impending. The biggest risk of this is that if it proceeds unchecked her body may only have 3 or 4 more years to grow, and then, thinking that puberty and the growth years are complete, her body will stop growing. We are going to check her hormone levels with blood tests and also check how far she may have progressed into puberty with an Xray of her hand and wrist. The bones will tell us how old they “think” they are, and will help us understand exactly where we are at on the curve.

There is a medication called Lupron, that can stall the progression. This is delivered with an intramuscular shot, making it very painful. Abbie would potentially need one every three to four weeks for up to four years. Just when I thought there weren’t any more painful decisions left to uncover in our brain injury box… Dr. U. did tell me of one mother who stopped having her daughter take the shots after one year to purposefully keep her small, to make caregiving more manageable. I can certainly understand that point of of view, but at this point I am not willing to stunt her growth to save my back.

We will follow up with Dr. U. in two weeks to go over the results of the test and determine how to proceed. Please pray especially for the Xray results. I don’t think anything in the blood tests will especially surprise us, but I am really hoping that her bones don’t show a great difference between her age and their condition. Abbie is going to be my tall, beautiful ballerina, and I can’t imagine her any other way.

As for Abbie herself…she is doing great! Her burn is almost completely closed now, with a majority of the skin being pink and smooth. We are seeing new things all the time. The latest is the increased frequency and speed of her turning her head to follow something or to engage. Much better eye contact is such a blessing! Her strength is also increasing. She has great head and trunk control even on an unstable surface like a rolling or bouncing ball. We are now challenging her to see how far we can lean her back when she’s sitting and have her maintain head control. We are all the way back to a 45-degree angle now, which says alot about the strength in her neck and tummy muscles!

She awoke on Monday just “different”…she was so loose and happy. Who knows why. That is one of the frustrations about this journey…you are never completely sure what’s wrong on the hard days and are equally lost about what went right on the good days. Monday night I held her on my lap in bed and she felt completely normal to me, snuggling just as we did the night before her injury. I cannot describe how wonderful that felt, and the hope it stirred in me. There are times I forget how life, how Abbie, used to be…perhaps that is God’s mercy. But, seeing glimpses of it again through the trip to Disneyland and through Abbie’s good day remind me that I don’t want to get used to this life. No matter how tired I may be, or how comfortable I have become, I want perservere until our joy is complete.

A Magical Time

We are back from the “Happiest Place on Earth”, and it certainly lived up to that billing for us. Halfway through our first day there I realized that not since I was a young child have I been at a Disney property without a stroller and all the accompanying gear…it was great fun to be able to move with ease, to ride all the rides together, to laugh, to play, to eat (and eat…it’s all about the frozen bananas!) It was so sweet for me to enjoy every moment , every experience with the boys.

The boys thought of their sister at almost every moment. When we were souvenier shopping on Saturday, Matthew found a bead bracelet building station. He told me he wanted to make an “Abbie” bracelet, so with a huge smile I began to help him do that. About the time we were done RJ found us, and said, “Wait, it needs to say ‘I LOVE Abbie'”. We all agreed he was right, so we found the “I” and a great big red heart. With the addition of those things and a Minnie bow, the masterpiece was complete. Matthew then melted my heart by insisting on wearing the bracelet the whole time we were there.

Abbie did wonderfully while we were gone, because of how much tender, loving care she received. With each call home my apprehension was replaced with joy as I would get reports of her engaging with the children of the friends who watched her each day. She turned her head back and forth to watch Macy and Hailey – which sounds dangerously close to tracking! She was so pleased to recieve friendship bracelets from Keiko and Katy that she lifted her arm and looked at them for a long time. She was vocal, responsive and playful. In short, as we have seen lately, she thrived on the interaction with other kids. This has challenged Ray and I to figure out how to get more of this for her.

There have been many blessings in the journey with Abbie, one of the most precious being the opportunity to witness the depth of character and love in the hearts of our friends. Debbie spent the night with Abbie each night we were gone, and then each day a different set of our friends would take over…they truly made our Disney Dream possible.

We took a day off on Wednesday so I could get recharged, and now we are back in full swing. We did HBOT yesterday and today, PT yesterday and today, and also had Abbie’s speech group today. Her burn is healing quite well…out of the nine inch original burn only about two inches is still open. It is still causing her pain, however, so would you pray for comfort, pain relief and speedy healing?

We are seeing her use her vision more and more effectively, which is exciting. Her head and trunk control is also improving, most notably in her ability to remain in control as we tilt her body side to side. She is also doing great at bench-sitting, which requires her to bend her knees to 90 degrees and put her feet flat on the floor while still holding her trunk and head. What makes me smile the most, though, is how much she has been using her voice…very intentionally, every appropriately, and often with a smile. We usually can’t decipher what she is saying, but it certainly had meaning to her so we will get there in time.

I must admit to being a bit melancholy on Wednesday, the day after we returned from California. Our wonderful trip gave me a taste of what is would be like to have a “normal” family again, to be able to have energy to focus on the boys, and what it is like to actually sleep at night. I pray that it was just an appetizer for the feast of joy that is coming. On the trip home we all agreed that when Abbie is all better we are taking her to Disney World…there is much her brothers want to show her and many princesses she needs to meet!