Neurologist’s update

Abbie’s neurologist called today to go over the bloodwork in detail, discuss how the medication is going, and tell me the results of the recent EEG. The bloodwork showed that her electrolytes were fine, protein is right where it should be, she is not anemic, and her calcium levels are normal. This was enjoyable reassurance for me, since I make all her food I always wonder how I am doing.

She asked me how I thought the medication, Trileptal, is affecting Abbie. I think it may be making her just a little bit sleepy, especially mid-morning, but we haven’t been at the therapeutic dose long enough to really tell. I asked if I could just watch her until her appointment on 8/17. I also told her that we are seeing some good things, too, and told her how well she did at rolling last Friday. Her response to commands continues to be very quick. Last night, as she was laying on her back I told her she needed to choose which way to roll. As the last words came out of my mouth, she raised her right leg, so we rolled to the left. She had a good day in therapy today, as well. Her legs are so loose and relaxed that she can stay at almost a 90 degree angle when seated with no problem.

Then the EEG…she said the best EEG-reader (another neurologist) read Abbie’s test, so she is confident in the results. As expected the speed of activity is slower than normal for her age. But, later in the conversation she told me that it has improved since other EEGs. The testing portion while Abbie was awake showed no seizure activity. It wasn’t the same story when she was asleep. There was seizure activity noted in both frontal temporal lobes, and the right occipital parietal lobe. This means that sleep is an “activator” for Abbie’s seizures. This information fit perfectly with what we saw on Saturday. After being up for most of the night on Friday, Abbie had about an hour’s worth of breakthrough seizures. As soon as she fell asleep, they were over.

So, yep…she’s officially having seizures, and needs meds. Not something I ever wanted to have to write, but by God’s grace, all is well. As I told her doctor, this is just one more path we have to go down, and we’re getting pretty good at this travelling stuff by now.

A Good Meeting

Today’s meeting with key people in the DDMR program went very well. I learned a lot about how the system works, but more importantly, how to work the system for Abbie’s benefit. It was providential timing because just this morning we had a vendor come to her PT session to size her and begin the paperwork for a stander. I was able to tell the DDMR folks about how critical this equipment is, so they will be expecting the paperwork and have vowed to work hard to move it quickly.

They explained that some very positive changes should be coming to the system soon that will allow families more control and input about how money is spent for each child. I am hopeful this will address one of the items I pleaded with them about — making the system more transparent and user-friendly. At the end of the day, it is still a bureaucracy with all the headaches and limitations to prove it, but I believe it can and will be improved.

Abbie had a pretty mellow day since we just did a lot of talking during therapy today. However, even in the midst of our stander pow-wow I looked down to see her doing new things. She was laying on a mat and was practically doing circles with her arms..way up over her head and then back down, while holding onto lumps of modeling clay (aka “the poor man’s orthotic”) in each hand. I happened to be wearing white pants that were a terrific canvas for strokes of orange, red and yellow clay. The sheet on the opposite side was colored blue from the clay in her left hand…it was as if she was making snow angels.

Chase and Kyle watched Abbie while I went to the meeting, and did a wonderful job. I am blessed to have such helpful sons, especially when I am without nursing

Tomorrow Matthew and RJ will be playing in the championship game of the Hawaii National World Series, which has been consuming our lives since last weekend. The most important part of a win is the humongous trophy the winners get…we are praying for success and a continuation of the great fun we all have been having.

I was just telling Ray, “Looking back this has been a tough summer for Abbie…Botox in June, having to start seizure meds, finding out a hip surgery is non-negotiable…but, I feel oddly hopeful. ” There is something stirring in me that is so opposite of what is going on in front of me, that I can’t help but feel that all is well and we are on the way to something very good.

An Important Meeting

This afternoon (2pm Hawaii time) I will having a meeting with some of the supervisors and directors of the state program Abbie is in (DDMR). This program supposedly provides case management, nursing care, equipment and resources — I have seen very little benefit from this program. So, it will be a blessing for me to be the voice of many Hawaii families today as we sit down to discuss how their efforts are matching up with the needs of enrolled kids and families.

Please just pray for me to not carry anger into that meeting, especially since Abbie’s hips are such a fresh and potent illustration about the cost of system failure. God promises to give us the words we need when we need them, so I am claiming that for today! Please just pray for extra favor and for receptive ears. I am going into this meeting assuming that these are good-hearted people who sincerely want to help the kids but just don’t know how to do it effectively. I hope that is an accurate assessment!

Abbie’s feet were a little puffy again last night, so we’re still on the case, tracking down clues…Encylopedia Brown, where are you when we need you? But, it’s a bright shiny morning, the sun is streaming in and I KNOW it’s going to be a great day…..after all, God made it.

A New Day

Abbie must’ve known that I was quickly slipping down the Bad Attitude Slope, and needed a burst of light to keep my feet on the path. This morning I saw a new and exciting thing from her, which she then happily displayed later on at PT.

After bathing her I had her on her side and told her to bring her arm and leg over, which she quickly did. Then, she just kept on going, until she was on her tummy. She’s begun doing this recently, so I was happy but not surprised. Suddenly, she was bending her knees, pushing with her legs, twisting her hips and lifting her tummy to try to get her arm out from underneath her. We’ve never seen isolated movements of her hips like that, nor a bent-knee push with her legs. Definately brand new stuff!!

While these may seem like small details, the important thing is they are new and she did them repetitively to command and with encouragment. At PT she helped bring her arm out by straightening it, which requires her to work against her high muscle tone — a real sign of her understanding of what we’d asked her to do and of how she was supposed to do it. Woo-hoo!

She was terrifically and deservedly proud of herself today, and God provided her with a special reward. Tucker, a 9-month-old yellow Lab, stopped by therapy today. He is in training as a therapy dog, and will soon work at Kapiolani every day. I have never seen a mellower, more handsome puppy. He laid his head right in Abbie’s lap and let her pet him. The handlers took some pictures which they will email to me. Seeing him was good for my soul, too!

Ray summed it up best for me this morning when he called to check on me…”Hey, Tiff…it’s a new day!” Indeed it is!

Shriner’s

Yesterday was Abbie’s follow-up for her Botox treatment at Shriner’s. I knew I would have lots of non-Botox questions for her orthopedic surgeon and was incredibly blessed to have Abbie’s PT Lynette join us for the appointment. She drove into town from Ewa Beach on her day off — just typing that makes me cry.

Anyway, first the good stuff…Abbie’s knees are bending very well; easily past 90 degrees on the right and about 90 on the left without any kind of warm up. Dr. O. said that what we are now seeing is not the effects of the Botox but Abbie’s improved range that we gained from stretching her while the Botox was at its peak. In other words, what we’ve now got she should be able to keep. Her feet weren’t as great – just to neutral, but we think there is an additional muscle group involved that we are going to try to treat with the next round of Botox, which will probably be in October.

Dr. O described a tendon lengthening surgery he does where he basically nicks the tendon allowing it to stretch but does not “release” the whole thing by severing it completely. Depending on how the next round of Botox does, this is something we may consider.

Then, it was time to talk about her hips….again. We got her previous films out, which show her right hip about 75% out of the socket. The left hip is also subluxating, but not nearly so much. Dr. O. told me that we didn’t absolutely have to have the surgery by the time she is six, that just makes it easier. If we wait until she’s 11 or 12 the cup portion of her hip socket will have lost it’s ability to remold around the ball once it’s reinserted, which necessitates surgical work on both the cup and the ball. If we do it while she’s young Dr. O. will only have to work on the ball, making the already major surgery a little easier.

I mulled that over, and then we talked about an aspect we’ve not previously discussed. The head of the femur, the “ball” is supposed to be at an angle to insert into the cup. This angle allows for the proper movement and fit of the joint. The head of Abbie’s right femur is practically vertical, there isn’t much angle left at all. As I absorbed that I said, “So, extra weight bearing, Botox, stretching, special exercises…none of that is going to make the angle reappear…” The answer was “no”. In my mind this moved the surgery from something we may try to avoid, to a certainty. I was alright at this point, the sadness and anger would come hours later.

Once I realized the surgery is inevitable I decided it will probably be better for Abbie to do it sooner rather than later, while her hip sockets can remold themselves. I was fearing, after corresponding with a near-drowning family whose daughter just underwent this surgery, that it would mean 8 weeks in a chest to ankle cast. Dr. O. said they do 2-3 weeks max, and that’s really just a comfort measure for the patients. He said they get the hips so well fixed that they don’t need a cast to hold the hip in place, but the patients were uncomfortable without an initial cast.

So, within the next year we will most likely take Abbie in to have portions taken out of each femur and the heads of her femurs secured to the hip sockets with metal blades. The metal screws and blades will stay in for about a year, and we should only have to do this surgery once. As I told my small group last night, through tears, I still have to believe what God has told me about Abbie, even when everything I see shouts to the contrary. So, I must still believe she is going to be a walking testimony someday, and this surgery is our chance to ensure that when she walks it will be as easy and painfree as possible.

The anger…it came in waves that evening as I realized that this was almost certainly avoidable. The heads of the femurs lost their proper angle because Abbie didn’t have enough chances to bear weight on her legs. I raged at everyone, from the beginning rehab folks who didn’t have the proper equipment (it was 8 months before we even got her into a stander), to the case managers who wouldn’t submit a request for one since we couldn’t even get life/safety things like stand-by trach devices or a bath chair, to the surgeon who saw Abbie 2 months after her injury but didn’t propose any preventative measures like sleeping with a hip pillow or buying a stander….but mostly I raged against the system of payors who drive everything, both private and governmental. They never see Abbie, they don’t have to live with the consequences of their denials and abhorrent system functioning, they certainly don’t have to endure her physical pain. There is no accountability for them and no recourse for Abbie. Abbie has been failed by everyone, including me. If I would’ve known early on how absolutely vital this was, we would’ve come up with the $4000 to buy one for her. This same anger is what is driving me so hard to get the Hope Program going, but I cried bitter tears last night that much of the benefit of it will be too late for Abbie.

Typing this is getting me to the same emotional place again, so I need to move on to tell you how we have again been carried through this. I want to share another email from my friend Julie, who recently wrote to introduce herself and remind us that none of this was an accident. At the end of that email she said she was going on vacation to South Dakota and would pray for Abbie while she was there. This is part of the note I got upon her return.

I wrote you a couple of weeks ago and told you that I was going to South Dakota and that I would pray for Abby while I was there. I have to tell you what happened to me while I was in South Dakota. I was shopping in a gift shop at Mt. Rushmore to buy some gifts for the daughter of my best friend whose name is Anna. They had some beautiful Indian bead bracelets that had names beaded into them. I looked for Anna but they were out as I turned to walk away from the display my purse caught on one of the hooks and the bracelet that said Abby fell off and onto the floor. It gave me chills. I picked it up and bought it and wore it for the rest of the trip. On our last night there I bought a helium balloon with a smiley face on it and I tied the bracelet to the balloon and I sent it off to God with a special prayer for Abby. I just know that the bracelet falling off of the rack wasn’t an accident. Thank you again for allowing me to feel so much love through your daughter.

I just imagine that balloon flying high above the heads of four American heroes, floating up to God. And, it reminds me that all we think we know or understand is so far below what God thinks, knows and plans for us.

Cruisin’

Today’s PT session brought the return of the Walkable. We have been using the tilt table to get Abbie standing, but have not taken her walking in almost 2 months. This delay was mostly due to the diaper rash she had, which ended up being fungal. Thanks for all the good suggestions about treatments. We’ve found that grapefruit seed extract is doing a great job, and her skin is in beautiful condition now — ready to get back into the harness.

Since Abbie has been doing such a good job at tall kneeling, I felt we had a good shot at getting her knees to bend while walking. This is usually the toughest challenge for her. The first ten steps or so were pretty rough, with only slight bending in her knees. After that initial challenge though, she hit her stride, literally. She walked to the end of the hall and back in 15 minutes, which is definately a record for her. The secret is making her take big steps; the more distance we could get between her legs the more automatically her back knee would bend. It was really an “up” day for me at therapy today. I try not to ride the rollercoaster too much, but have learned it is OK to savor the good days.

Abbie was very vocal with Debbie this afternoon, and as Debbie put it, “She’s back to her teasing self again.” Lots of smiles, playing tricks and telling Debbie when to be quiet. She did terrific tonight in the bathtub moving her legs in and out to command. It’s wonderful to have something she can be so successful at; I like her to feel that way once in a while instead of everything being so difficult and just out of reach. If I take a step back and really assess how she’s doing, I get very excited…the Lord truly is “doing a new thing” in Abbie each day!

The Hope Project continues the birthing process, and recently I was trying to articulate what makes me, a woman with no PhD after her name and no specialized training, qualified to bring this into reality. The first answer is because I think, like the Blues Brothers, I am on a mission from God…this is part of His assignment for me right now, and whom He chooses, He equips. The second qualification is my double MA — not a Master’s of Arts, but rather “Mama” — I am a mom, and what true mother wouldn’t do anything in her power for her children? I found the answer that I am going to hang my hat on in 2 Corinthians 3:5 — “Not that we are adequate in ourselves to consider anything as coming from ourselves, but our adequacy is from God.”

For those interested, here is a brief overview of what we envision the Hope Project being:

“The Hope Project has multiple goals to support one mission: ensuring that each medically fragile child receives the best possible chance to reach his or her maximum potential.

(note: “medically fragile” defined as using technology to accomplish one or more functions normally done independently)

Goals which support our mission include:

Creating a holistic, multidisciplinary day program to provide fragile kids with the intensity, frequency and duration of intervention they need to progress. The program will utilize the best techniques and methods found internationally, including some that are on the leading edge of science and research.

Providing a training ground for current and future professionals who are or will be involved with this population. This includes: physicians, nurses, therapists, educators, social workers, case managers, program administrators, and legislators.

Empowering families. They are the child’s caregiver, advocate, therapist, and teacher. They are the only ones with a truly global perspective on their child’s case, and obviously have the most vested interest in success. They will be vital partners in each aspect of the Hope Project. We will also support families as they endeavor to create a healthy, loving, vibrant environment for the entire family.

Involving the community in projects, volunteer opportunities, and awareness, specifically focusing initially on the community of faith. Willing hearts and hands need only the invitation and training to become part of the Hope team. Community involvement will also help build bridges for the families to connect with a world from which they can sometimes become very isolated.

Becoming a research center nationally and internationally. As brain, motor, and cognitive research expands and pushes forward, we will be at the center of current pediatric research in collaboration with physicians and researchers from the United States and other countries.”

Please Pray for Hope!!!

Party Girl

Today, Abbie went to her first birthday party since she was injured — a gathering of very beautiful princesses and ballerinas. She was quite pleased when Katrina, one of the birthday girls, put a pretty necklace around her neck, and she used her switch fairly often while we were there. It was frustrating but good for her to be around girls her age doing girly things.

The party was for Katrina and Christa Cheshire, who turned 8 and 5 respectively. Many of you joined me in praying for their daddy, Walt and their mom, Katie while Walt was in Iraq. He is back now, and it was wonderful to see him taking video of his daughters blowing out their candles…another confirmation of God’s goodness and protection.

By the time we arrived home Abbie was one pooped-out princess, and slept for the rest of the afternoon. She awoke with smiles and is back to her normal self after our rough day yesterday. I got a message from her neurologist that all the blood tests taken last night came back normal – praise God! So, the source of the puffiness is still unknown, but we haven’t seen it return today.

I’d hoped to post a picture of Abbie at the party, but by the time I got the camera out her fatigue and frustration were climaxing and the whining had commenced. So, we’ll just keep the crown for another day and get a shot of her smiling.

Puffy

Something new to figure out with Abbie. As I had her up on her knees last night I noticed that her feet were severely swollen…red and puffy, turning white when I touched them, and her toes looked like little sausages. After elevating her feet for a while the swelling went down quite a bit and I put her to bed for the night.

She awoke this morning with much higher tone than usual, and seemed to have a tummy ache. The first feeding of the day only made her grumpier. I was pretty exhausted from some late nights when Nurse Cori arrived at noon. So, I gave Cori the scoop on what had been happening and then went to take a nap. Abbie did great with her noontime feeding, worked through her exercises cheerfully for Cori, and was happy until around 2 when the complaining started again. Around 3 I lifted the blanket off her feet and saw little sausage toes again. Her feet had been perfectly normal 30 minutes before when Cori put the pulse-ox on her toe.

One potential side-effect of her new seizure medication, Trileptal, is a lowering of salt in the blood. After seeing these strange things with Abbie’s feet, as well as noting that her hands were cold and clammy when her feet were swollen, I called her neurologist, Dr. O.

Dr. O. has ordered a battery of blood tests to see what is going on, so I will be taking Abbie in later tonight to have that done (lots of good parking, not a long wait at night). At first we were just going to check her electrolyte levels, with sodium being the main target, of course. But, Dr. O. called back and said that since we have to stick Abbie anyway we might as well do more comprehensive testing which will cover things like kidney function. I will be grateful to have as much information as I can get.

I did relate to Dr. O. that we have seen some good things since starting Trileptal and told her specifically about Abbie moving her legs to command in the bathtub, both in and out and up and down. She was very pleased and surprised to hear this, and the tone in her voice encouraged me greatly.

So, please just pray that we can get to the bottom of this. Pray that we’ll have the wisdom to do what is very best for Abbie. She gets to go to her first birthday party tomorrow, and is thrilled about it. All the girls will be wearing princess crowns, so Abbie has hers out and ready to go. Even in the midst of her complaining this morning I could prompt a smile and win some temporary peace by reminding her about the party. Please just pray that she’ll be comfortable enough to enjoy it and interact with the other princesses.

May God bless you with a great weekend!

No accident

Thankfully Abbie has been peaceful, happy and cooperative today, allowing me to catch up on many long overdue phone calls and emails. I contacted companies about orthotics, a listening program and nutrition this morning, sent emails to a homeopath, some MDs, the nursing agency, and folks who are helping me bring the Hope Project into reality. I’ve decided I need an administrative assistant!!

But, Abbie was certainly not neglected today. We had a good session at PT, where we continue to see reddened heels at the end of standing sessions, meaning she is now bearing weight using her whole foot and not just the ball and her toes. She was very loose on the bolster, and we made some progress at pinning down what is causing the external rotation in her left arm. It is a muscle group that sounds more like a constellation than human anatomy (Tarsus Minor?)

I would like to share with you part of an email I recieved recently from a woman I’ve not yet met, but who has stood in prayer with us. Her words were a very powerful confirmation for things I’ve been thinking and feeling over these past few months. Here are some of Julie’s words:

“Maybe Abby’s accident wasn’t an accident at all. Perhaps she was placed in that pool, without fear, panic or pain, by God. She did just say “Jesus will keep me safe”. Maybe that was His way of letting you all know that the events that were about to unfold were part of His plan for Abby, your family and many, many more. We don’t get to see the master plan, just the part we play but faith tells me that Abby has a bigger purpose than to grow up a strong, healthy, “normal”, child. God has given you this gift, knowing that you would know what to do with it. Knowing you would spread His word through her and maybe, keep a few other children safe in the process”

As the one who initially gave Abbie CPR poolside, I can tell you that she was gone from her body. God’s Word tells us that if we are absent from the body we are present with the Lord, so I’ve always known and been comforted by where she was during the 30 minutes or so that she was gone. However, as I’ve thought about it more I’ve also come to believe, and agree with Julie, that it wasn’t an accident. I think God offered up a very hard, long, challenging job, and I can see Abbie bouncing up and down saying “Pick me, pick me…I can do it!!” I truly believe that Abbie had a choice about whether to come back to us, and that she chose to do so knowing what would lay ahead for her.

When I told Ray about what I was thinking, he paused for a while and agreed, adding his own illustration. I was not in any shape to remain in the ER trauma room with Abbie while they continued rescusitation attempts, but Ray would not leave his little girl. He continued stroking her forehead and reassuring her as they were putting in central lines, doing chest compressions and shocking her. He says now, looking back, he doesn’t know why he didn’t just tell them to stop their compassionate but brutal attempts to revive her; why he didn’t just tell them to let her rest peacefully. The only conclusion he came to is that God protected him from jumping in and derailing the plan for Abbie.

We are encouraged that we are right where we are supposed to be, and that perhaps Abbie was born especially for this mission — bringing hope and faith is a privilege for the brave and the strong-hearted…Abbie has proven she is both, and we couldn’t be prouder of her!

A new site

Aloha! Welcome to Abbie’s new update page. For over two years now I have been working with my dear friend, Michelle, to keep www.prayforabby.com up-to-date. This entails me writing updates in Word, emailing them to her in Florida, and then having her post them. I am hopeful that if I can blog directly I will be more consistent in posting updates. The main page will remain up, and I will be updating much of the information there as well.

There is much to catch up on. I wrote an unpublished update on 7/5, but will wait to cut and paste that later, so that I can give the most current news now.

Abbie did have to start a seizure control medication, Trileptal, on Monday 7/10. I shed many tears as I gave her the first dose, but she needed Diastat (the emergency drug) for waves of seizures on 7/6 and 7/10, so I knew we needed to face this problem.

It’s been 9 days now and my greatest fear, that the medication would make her overly drowsy or “out of it” has not come to fruition, praise God! If anything, she seems much better on many fronts. Her muscle tone is notable softer, she is much more vocal, we are getting more frequent laughter (a real joy!), her face is more animated – particularly noticeable changes on her weaker left side, and she is responding to commands even more quickly.

An example of the command response happened in the bathtub earlier this week. I asked her to move her legs in and out – she promptly did, several times. This is a big step because she’s been able to move them in for a long time, but moving them back out marks an improvement in her tone–previously she was too tight to overcome the tone to move her legs back out. But, the cognitive function was apparent when I changed my directions slightly, and asked her to move her legs up and down instead. She immediatly changed her efforts, and although the movements were not huge, the understanding and intent were certainly there.

Physical therapy is going well. We continue to work on standing with the tilt table. When we first used it about 4 weeks ago it would take 40 minutes of standing to get her heels to come all the way down. On Monday it took 3 minutes. I have been able to get Abbie “standing” up on her knees (tall kneeling) and lately have been able to bring her body back to almost sit on her heels. This is a huge improvement in flexibility for her, and she enjoys being in these new positions.

But, the special joy lately has been watching the relationship between her and her brothers. In the update not yet posted I wrote about Abbie’s latest new word, which is “brother”. How fitting. She is still completely enthralled with her four young princes, and the feelings are deeply mutual. More than any therapy, device, modality or treatment their love and attention is bringing Abbie out.

Thank you for your patience and persistence in prayer during these lapses in updates. Even in times of silence, be assured that you are still carrying us!