an epiphany of sorts

Today is the day of Haley's big appointment. I've made sure that everything is ready. Made sure we had all notes and documentation. Everything was ready on Friday for today. So this morning I started to gather it all up. First, I couldn't find our insurance card, and for some reason our printer is on the blink. After fighting with the printer for a while, I needed to grab the map to the doctor's office. It was not where I left it. That's okay, the directions were on line. As long as I had the notebook, everything would be fine. That held a few jotted down notes to ask the doctor, as well as a photograph of particular interest. The photo was taken underwater when we were playing in our old pool with an underwater camera. It showed Haley's foot out of joint and folded over. That picture was taken on accident, but was helpful to her doctors in the past. It was from our pre-digital days, so there weren't many copies.

Anyway, I couldn't find anything that I had planned to take to the doctor. Notice how many "I's" are in this so far? With my hands buried under the sofa cushion, the epiphany came. God doesn't need my help with this. It won't matter if I have my notes, or a photo. Those things haven't been magical in the past. I have to let go of this too. God's got this one. He can use this doctor to reveal the answers that we so desperately seek and have sought. God alone. This is so much bigger than us, and everything I've done to try to find answers has failed. That also means that if this doctor can't figure Haley out, it isn't my fault. It's part of God's plan. He will still be praised.

The Hands

The words "sleeping brace" for scoliosis are a little misleading. Here's what a Providence brace looks like. It's hard plastic and fits very snugly. Not designed for a comfortable good night's sleep. Designed to keep your back from doing anymore curving. It's pretty good at that. Did you know that bracing for scoliosis doesn't straighten your spine? The brace only keeps the curve from increasing. I didn't know that. Maybe that wasn't in Deenie, which was where most of my knowledge on the subject came from until very recently. Haley's brace was doing it's job and things were good. For a minute or two.

This past December Haley started having odd symptoms with her fingers and hands. She was having lunch one day, and noticed that her fingers were bending on their own. They really were. Two of them on her left hand when she would put her hand up as you would to say "stop". That was odd, but she was in no pain at that point. I didn't rush her to the doctor figuring that she had slept on her hand, or pulled a little muscle. No bit deal, right? Wrong. Before long, she would complain that her hand was "shivering". Then it would hurt. We had an appointment at Shriners and they would check it for her. Maybe her spine was curving at a point that would cause this? They examined her hand and brought several specialists in to see her. They decided that she had strained her arm or wrists and that was causing the new symptoms. With time, it would get better. Nice try, but that wasn't the case.

We were having lunch out at Moe's (love that place) for girls' day out. Haley ordered a burrito, and was having trouble cutting it. She couldn't use her knife and fork well enough to get the job done. Her right hand was having the same weakness, pain and trembling as her left now. Not good. Haley saw her pediatrician the next day, who was sure that the problem must be neurological so she referred her to another doctor. Why does it always take so long to see a specialist? It was about six weeks before she saw her new neurologist. During that time things were getting more difficult for Haley. She wasn't able to paint her nails. She stopped taking her cooking class. I couldn't get her help soon enough.

The neurologist was pretty cool. He came in the room with an old school black doctor's bag and examined her very thoroughly. There were a few things that he wanted to check for specifically. Muscle atrophy and wasting were words he used. Scary. So there would be blood tests and something called an EMG/NCV. The EMG/NCV test involved longish skinny needles being inserted into different muscles to measure a neurological type response. Not a fun testing day, but Haley was a champion. All tests were complete and the results were almost completely normal. The only exception was that she has mild carpal tunnel syndrome in both wrists. It was good news because those tests ruled out some pretty horrible conditions. Also, she had no atrophy or wasting as the doctor first thought. The neurologist said that Haley needed to see a pediatric rheumatologist. It has taken months to see that doctor. Her first appointment with him is on Monday. Hopefully, he'll be wearing his thinking cap because he will be needing it.

During these months of waiting for this appointment, her hands have been mostly okay. They don't bother her every day, but when they do they really do. She has had pain in her shoulder as well. It will be good to get a fresh perspective. Haley probably should have seen this type of doctor a long time ago. Especially considering her joint issues, but it's never been suggested. Maybe this doctor will figure something out, maybe he won't. I've lowered my expectations over the years. God designed my precious daughter in such a special way, that as of right now, He's the only one that knows all the details. Maybe one day He'll let us in on the secret. Until then, I'm really thankful that He's given me the peace and her the grace to deal with it all.

That upcoming appointment is probably the reason I've blogged all week. It always forces me to revisit the past in preparation for an appointment like this. Usually, it's all heavy on my mind. This time it isn't. Cool.

Fez Lover

For about three years things went really well for Haley. Nothing came up that needed any extra special attention, medically speaking. Her teeth needed all sorts of work, but that's pretty normal for her. There was nothing that arose that required her to see any specialists at all. We didn't have the answers that we would have liked to and were finally at peace with that. Then she asked me to brush a tangle out of her hair after her shower. Haley has really long hair and usually takes care of it herself, so it was nice for her to ask for me to brush it. She was sitting on my lap (yes, we still encourage that) and as I pulled her hair back, I could see it. Her spine was curved.

One shoulder stuck out more than the other and was higher too. I called the doctor. Haley goes to the pediatrician for the routine stuff, check-ups, sniffles, and such. The doctor diagnosed her scoliosis in the office and sent her for an x-ray to find out to what degree the curve is. Then we waited to find out what the doctor had to say. They decided that her curve was about 25 degrees. Not too bad, but not good either. Here's where a little miracle of sorts happens. My best friend L ( I have two, my husband and L) happens to have a son with Muscular Dystrophy. She and her son inspire me in about a million ways. They are the most fun people and I love them all. He goes to the Shriner's Hospital to be followed because scoliosis can be a complication of his condition. She told me to call them. I was one freaked out individual at that time. Haley needed a doctor to treat her scoliosis that already understood her other issues. After some research we decided that Shriners was the best place for her. Here's the miracle.

They said we should apply then wait to see if she would be accepted for treatment. Check back in a few months. Shriners is pretty much all inclusive when it comes to treating scoliosis. They do the evaluations, testing and bracing on site. It's at no cost to patients or their families no matter what your economic circumstances might be. That factor along with it them having an awesome reputation makes it tough to get accepted for care. We felt that it was the right place for Haley, and prayed as we faxed them her application. We were praying and crying with very heavy hearts. The new issue for our daughter was about more than we could stand to watch her go through. We thought it was just more than one kid should have to deal with. We still do. But we were crying out to God, asking for Him to give her the best care and help her through it all. We called them to confirm that they had received her application. They did, and told us that they would take a month or so to process and that they would be in touch after a while. That was on a Friday.

Shriners Hospital called on Tuesday to welcome Haley as their new patient and schedule her new patient appointment. That was two business days later. That would qualify as a miracle in my book. God had made a way for Haley to get the best care and fast. They are taking really good care of her there. She has a miserable, horrible Providence sleeping brace that is working just enough. It will be a year next month that she first saw them. Her curve hasn't increased much at all. The bracing is working. Her brace is purple with butterflies, by the way.

Oh, and we love the Shriners. They are fez wearing superheros that are helping my daughter and so many other people's kids. Smile extra nice at them the next time you see them in a parade, okay?

Pearly Whites

After we found out that we weren't going to find anything out, life just went on. The kids all were growing and happy. Healthy for the most part too. Our youngest daughter, Haley (that's her name), had new symptoms come up from time to time, but mostly life has been good and pretty close to normal. Believe it or not, none of her issues were a big deal at all. She went years without needing to see specialists. Everything was mostly fine. Unless you count her teeth.

Yes, the teeth. Who knows why she has so many problems with them. Her dentist says that she has reduced salivary flow and that they decay from the inside out sometimes. She has enamel and dentin deficiencies. She also holds her mouth open a lot, due to the hypotonia (low muscle tone). All I do know is that saving her teeth has been quite an adventure (and not in a good way). She had her first cavity (on the front side of her front tooth) when she was three, her first root canal when she was four. She has had oral surgery on three occasions, two of those in hospital operating rooms. We maxed out our dental insurance 3 years in a row. Her teeth decay in a quickness, so we have to be super aggressive in her treatment.

God gave us Dr. L just over four years ago. Haley's dentist at the time was concerned that she couldn't keep up with her mouth anymore and referred us to Shands at UF in Gainesville. We waited months for the appointment before she was seen. After they examined her, we were told that she was a good candidate for treatment there but it would be at least six months before she could have surgery there. They were afraid that she would have tooth loss in that much time, so they gave me the name of a new dentist in the city we were in the process of moving to.

That would be Dr. L. Haley saw her right away and had oral surgery within two weeks. From that time on, Dr. L will fit Haley in to see her on a moments notice. There have been months that Haley has seen the dentist at least once a week. The blessing of finding this dentist is that Haley doesn't mind going. Dr. L. has such a kind way of putting Haley completely at ease. For someone that has to go have work done so often, that is priceless. If there was a world's best dentist award, it would belong to Dr. L. She is trying to save Haley's permanent teeth. Unfortunately, she isn't a candidate for implants. While she has lost several, Dr. L. is doing everything she can to help Haley keep the rest of them. We don't know what will happen in the end with those teeth, but I sure am grateful that Haley has someone that is working so hard to help her.

Answers, anger and what happened next

The neurologist took a bunch of notes then ordered MRIs of her head and spine (for the spina bifida occulta). It was quite an experience, she hated being sedated. They did her brain first, then had to move her around to do her spine. She stayed asleep for both. Her brain was very normal looking, but her spine showed that she indeed had spina bifida occulta. The neurologist said that the damage was significant for that type of spina bifida, and if it was the next vertebrae up, that she might not have walked. Her bladder and bowel sensations are reduced, meaning that when she says she has to go, that means now. Other than that there were no physical findings from his testing. Here's the fun part. The hypotonia and intellectual issues are symptoms of a neurological disorder. But they can't find it or explain it. We might not ever know the cause.

Let me just stop here to say I was disappointed. During the years that she recieved negligable medical care, I had built up in my head that things would be different with a "real" doctor. They would find her problem and fix it. Like magic. Well folks, there are no fairies and unicorns in this story. After all the doctors and all the tests, her diagnoses are just mostly symptoms. It was explained to me like this. All it takes is one light on a string of 200 to be burned out to keep the whole string from lighting up. You may never figure out which lightbulb is out. That's how neurological stuff can be, only times a thousand. And that one little bit of offness can change everything.

I became an angry person at this time. She still had a mixed bag of problems. It seemed like they were connected to each other somewhere but no one knew how. The genetecist couldn't figure her out. Tests had been done by an assortment of doctors that knew what they were doing, but still no real answers. My anger wasn't directed at the ones that tried to help. It was directed at the doctors in the military. Two things happened that set me off. One doctor told me that there were tests that should have been done within the first couple of years of her life that might have given them more to work with. Another told me that she should have had "medically relevant" therapies from birth. Hearing those things brought out the mother bear in me like never before.

There wasn't an attorney that would sue them. According to the law, I could make them pay as a civillian dependant on behalf of my civilian dependant child. But the military has endless resources and because we weren't dealing with tangible injuries there would be no lawsuit. I still wanted them to pay, and to never do this to anyone ever again. God was out of this equation for me. I didn't seek Him, ask for grace or peace or mercy. There was no forgiveness in my heart for those doctors. None at all.

One day I felt so heavy with it all that I finally prayed and asked God to help me deal with it all. I had always prayed for my children and especially for needs that they had, but not to ask for help in dealing with this all. You aren't going to believe me about what happened next, it sounds a little corny and made up. I was praying at my computer. When my prayer was over I opened my eyes and focused on a photo next to me. It was of my three children when they were babies. They were literally babies all at once. We had three in 37 months, our two girls first then our son. At that moment it hit me. If we had known everything there was to know about our youngest daughter's issues we would have made the decision to not have anymore children. We probably would have done something permanent. At that moment I focused on that picture I saw my son. The one we would have never had if we had known then what we knew now. If those doctors had done what I wanted them to do, we wouldn't have had him. My anger was gone. Just gone.

That was an awesome moment and an awesome realization for me. It's when I" let go and let God" for the first time in a long time. He had given me so many gifts and I was unable to appreciate them fully because I was wrapped up in months of anger. It was still going to be hard. Days came of sheer despair, we still have a few of those now and then. The difference is that He's in it with me. God has come through with that grace and peace and mercy. He's given us so many gifts along the way that are clearly and miraculously from Him alone. Oh, and I've never sued anyone.

It wasn't in my head

When I received the provider directory in the mail along with our new shiny insurance cards it was a good day. There were a lot of doctor's names on that list. We had never had a choice before. I started calling them, first the ones closest to us, then I planned on working my way out. The first question to ask, as I soon found out, was whether they were accepting new patients. A few weren't. My next question was whether the doctor saw many patients with special needs. It only took a few calls, really. Then I found her and made an appointment. It was only a few days away. I was cautiously optimistic about whether this doctor would help my daughter. She was already enrolled in kindergarten and would be receiving services there but she needed more. I did too. Answers.

The day of her appointment, my husband was in meetings and couldn't come with us. So I took my children, along with our youngest daughter's complete medical record from the military to meet the new doctor. She was a charming lady, with a heavy Filipino accent. She greeted my children warmly and made them feel comfortable quickly. They she examined my youngest daughter. Right away, she asked me what she had been diagnosed with. I explained that she was diagnosed with global developmental delays. She asked again for her medical diagnosis, then sat at her desk with her jaw hanging open as I explained our medical experiences so far. She looked through her records and was stunned when she read the first evaluation done by the school system. She asked me why no one followed up on this. My only explanation was that they wouldn't listen. That wasn't what this doctor wanted to hear. " Has she been checked for enlarged spleen and heart?" " Are you sure her hips have never dislocated?" "When was her last MRI?". The questions were flying and I had no answers.

By the time we left the office that day, she had orders for Xrays to check the size of her organs, referrals to see an orthopedist and a neurologist, and an order for a bunch of blood tests. I got home, away from the kids and sobbed. Sobbed out of relief that she was going to get help, but really sobbed because something was wrong somewhere. By the way, her organs were fine. So were here blood tests. The neurology stuff, not sure how to explain that.

She said "mama"...

when she was three. It was shortly before it was time for her evaluation at the base elementary school where she would attend a special ed preschool program. My father has been a special education teacher for most of my life. I knew that when she was three years old, that the school system would provide services for her so we gave it a shot. I scheduled the appointment for testing, it would be done over several days. They were so nice and understanding about her issues and my concerns. She was evaluated by a speech pathologist, an occupational therapist and a physical therapist. They scheduled my daughter's first IEP meeting. This is where people that sometimes don't even know your child talk about test results and present their plan of what should be done to help her. I think that I cried through the first four or five that we had over the years. Especially this first one. The guidelines for my daughter to recieve services would be for her to have a 20% delay in more than one area tested or a 33% delay in only one area. So they all gave their observations and explained the test results.

She would have a more than 33% delay in speech, she tested at 1 yr. 1 month (she was over 3) so that would qualify her for the program. There were also significant delays in other areas, and she would be recieving speech, occupational therapy and speech therapy. What a relief. She was going to get help. There were other things in their reports that were interesting. Words like "hypotonia", "joint hypermobility", mention of her dental problems as well. The speech pathologist observed that she couldn't move her tongue independantly of her jaw, in other words she wasn't able to move it from side to side. If food became stuck to her teeth, she was unable to move it away with her teeth. She couldn't lick her lips. She couldn't lick her lips? Maybe that is why they were always chapped no matter how much lipgloss we used. I took those reports straight to her doctor so he could see what these professionals observed. He had to listen now, right?

Leaving her at school on the first day is about the hardest thing I've ever done. She couldn't speak. She couldn't ask for a drink, or tell them what she needed. She communicated non verbally at this point and used some signs. I was so scared that she wouldn't be okay, but she was. That first day, I made it out of the classroom, but sobbed all the way to my car. I went back early to watch through the little window in the door. She was just fine. She would be in that classroom with those teachers and therapists for two and a half years. That's where she "found her words". I couldn't thank them enough. How could I? They were my hope of getting her help and they delivered in every way. There were bumps, but she got help. It was still difficult to understand her at times (especially for other children), but she could speak.

My husband was leaving the military after almost ten years. He hadn't been overseas since we had children, and it was reaching the point that he would have to go. They wouldn't send us as a family because they couldn't provide services for our youngest daughter. We decided that it was time for him to make the transition to civilian life. We prayed and asked God to give him a job and show us where to live. He did all that and then some. We learned from that situation that if you really give something over to God, and give Him all the glory, that He gives you way more than what you expected. My husband was working (still is) for a new company two months before his leave was up from the USMC. He has worked so hard and done so well. We believe that God gives you opportunities, but it's up to you to work your tail off and make the most of it. That's what my husband did. It is a great job, brought us closer to our extended family, good benefits including medical insurance. That's right, guess who gets to see her first civilian pediatrician? Finally!

When you have an eighteen month old that hasn't said a word yet the first thing they do is make sure she can hear. We knew she could hear us, but they needed scientific proof of how well she could hear. So they sent us to another military hospital, a couple of hours away from where we were stationed for her to have her hearing tested.

They put us in a room, with her on my lap and there were speakers on each side of the room. The idea is that she should turn her head toward each side of the room when noise comes from that speaker. Then a stuffed bear above that speaker would shake around to acknowledge that she had turned her head in the right direction. The test began, and she turned to the correct side when she heard the low tone, but then the bear scared her. She was done with that room and done with those bears. We weren't there long enough for them to complete the test in great detail, but they did concur with me. She could hear.

About that time, my husband was transferred back to North Carolina. We were going back to the same base that we had moved to as nineteen year old newlyweds. We liked it there, our oldest was born there before we left for California. It was going to be nice to have grass and trees again. As we settled in, there was still no development of speech for our youngest daughter. There were other things that came up though. She had always startled easily. Living near a busy street there were all sorts of new noises to bother her. Then there was her mouth. While she was eating, sometimes it would be as if she didn't know what to do with the food in her mouth. She would hold it there, and I could hear her swishing it around, but she wouldn't swallow. I would pry her mouth open and she would either finally swallow or spit it out. We were waiting for an appointment at the hospital with a new pediatrician. We had to figure out why she wasn't talking, why everything overwhelmed her, and get her some help.

The pediatrician did take her lack of speech seriously for a minute. He ordered a test called an ABR, which measured brain stem response to sound. She was sedated for it, and the results showed some level of improper response to sound. Okay, now help us? We were referred to an early intervention agency that came and played with her at the house. They brought puzzles, blocks and games that were all sorts of fun, but didn't help her talk. She should have been having speech therapy. The doctor could have referred her for it. I didn't know that you could have speech therapy if you weren't talking. That's my fault for not educating myself. I was so desperate and thought that I was doing everything I could for her. After my husband left the military, I recieved her complete medical record. Flipping through the pages, I look half crazy. Pages of me calling and asking questions about something that I read on the brand new internet. I was searching and grasping at straws, but none of it mattered or helped. They wouldn't listen.

Why not see another doctor? Great question, it was a matter of economics (meaning we had no money). At time, if you lived near a base that would be where you recieved your medical care. You had no other insurance unless you were away from the base and had some sort of emergency. For us to take her to a civilian pediatrician, we would have had to pay for those costs entirely. That wasn't a possiblitiy at that point. The military doctors could have referred her to specialists, either military or civilian. They could have sent her to Bethesda and we would have gone. No amount of begging would get her to see a specialist. They did refer her once to get an MRI. That hospital made an error in her anesthesia and she couldn't have the test. Her pediatrician on base thought that was okay, she probably didn't need it anyway. He told me that his brother had special needs and they never found out what was causing it either. Her diagnosis was "Global Developmentally Delayed" and that would be it. Just so you know, that isn't a medical diagnosis. You can be developmentally delayed and have nothing physically wrong with you. That wasn't the case for her and I knew it. My mission was to get her to a "real" doctor. I needed to get her a Medicaid card to make that happen. I filled out all the paperwork for her to get SSI disablity, the only way we could get her on Medicaid. Her application was denied. She didn't have a medical diagnosis. It was a vicious cycle. I should have done so many things differently.

August 18, 1993

That's the day she entered the world. It was an extremely hot week in the desert of Twenty-nine Palms, CA. My husband was an active duty US Marine and this is where we would live for three years. There wasn't anything particularly remarkable about labor or delivery, except she was born so quickly that my doctor delivered her in his dress uniform with a mask and gloves. She was instantly here and beautiful and different.

She had a very weak cry, so they scored her Apgar low until they "realized that's all she had". She had a pretty big head (15") and was a bit floppy. When they finally brought her to me in my room, my doctor said these words "You will notice the dimple in her back, that's a lumbar sacral dimple. She almost has an open spine defect, but she doesn't". Huh? What does that mean? I asked the nurse later and she told me not to worry that lots of babies had that. She showed me how to clean it out with a Qtip. The baby slept a lot and they kept waking her up to check her blood sugar (which was fine). They took her newborn picture and we brought her home. Just like you would expect, right?

There is no other word for this baby but delicate. There was such a vulnerablity about her. She had some feeding problems, gagging a lot. Nothing else unusual at that point. She "felt" different. We called her our "squishy" baby, because she was so soft. If we knew then what we know now, that this softness was due to hypotonia (low muscle tone) we would have done so many things different. She should have had therapy from birth. But we didn't know so we didn't do.

She had such an easy going disposition. She grew and eventually hit those milestones. A little late on some and really late on others. "Don't compare her to your oldest daughter, babies are different" is what they told me when I questioned her progress. I listened to them, they were the doctors, who was I to question their judgement? This went on until it came to her speech. Those milestones came and went and that was the one issue they couldn't write off or explain. She was eighteen months old and hadn't said a word yet, not even "mama". She had lots of nonverbal sounds that she made, but nothing resembling words. They were finally going to help me find out what was wrong. It would only take another eighteen months and the help didn't come from the doctors.

So....

I deeply love a child that happens to be a medical mystery. She is fifteen years old. A precious and priceless, beautiful gift. All my children are. From the moment my mysterious one was born, there was something so strikingly different and delicate about her. She was delicate in ways that made strangers cry. We knew that she was beautiful and ours. We had no idea what God had wrapped up extra-special just for us. We still don't know lots of things.

I am blogging this story, our story for so many reasons. There are many days that it feels like I am walking the edge of an emotional razor blade. Writing makes me feel better sometimes. Maybe there's someone else dealing with a medical mystery and you need to know that you aren't the only one. Maybe you have nothing but healthy, "normal" children at your house and forget how blessed you are. For whatever reason you are here, thanks.

Here's how the story goes. My youngest daughter has been a medical mystery for most of her life. She has some diagnoses that are only symptoms really. Symptoms of what, we may never know. New stuff has been popping up more and more lately, which has brought us back to the point of searching again. Now for the list:

Hypotonia (low muscle tone) - she was born "floppy", there is nothing actually wrong with her muscles. This is a symptom of an undiagnosed neurological problem. She is also intellectually challenged. Another neurological mystery.

Spina Bifida Occulta - the mildest form of Spina Bifida, has no significant bearing on her other than reduced bladder and bowel sensation

Connective tissue disorder - possibly Ehlers Danlos syndrome, she has extreme joint hypermoblity, along with joint pain. Not fun when the muscles supporting those loose joints are weak.

Dental issues - enamel and dentin deficiencies, along with reduced salivary flow

Scoliosis - big fun here, she sleeps in a Providence sleeping brace, a device of torture

Mysterious hand symptoms - started with her left then her right. Trembling, weakness and pain. The neurologists ran every test they could, and referred her to a pediatric rheumatologist to see if he can figure this one out. She sees him in 2 weeks.

That's one list. Here's the other list, the good one:

She is brave - faces tests, needles and all, without fear. She hates every minute but she endures with such courage. She had her first root canal when she was 4. God gave her an extra measure of His grace to carry her through. She doesn't fall apart, so I can't either.

No one works harder than her. She wants to do everything for herself. It might take her twice as long and it might not be perfect, but she is going to try.

She is artistic, creative and willing to learn. She loves sushi and High School Musical. She want to drive a Volkswagon Beetle with a Hello Kitty steering wheel when she grows up. She always wears frosty eyeshadow and too much jewelry. She can ride a bike and swim like a fish. She loves her cat and calls our 80 lb. boxer her baby and lets him sit on her lap.

We are blessed.