mystery no more

Last night, when I thought it would be too late to hear anything from the rheumatologist, the phone rang. The results of her biopsy confirmed a diagnosis of Sjogren's sydrome. This morning she took her first dose of Prednisone. Her doctor told us that because so few kids her age are diagnosed, that there isn't a standard protocol of treatment. He is going to collect some information and see Haley the first week of November. Hopefully her inflammation and pain will subside before then.

I don't know how to feel right now. I'm numb. We needed to know what was causing her hand symptoms and pain. That answer is here, along with the cause of her dental problems. I don't like this Sjogren's syndrome. I wish my daughter didn't have it. There are parts of it that downright frighten me. That's where God steps in. I can't bear the weight of it all right now, so He is helping me out.

We've had enough of all this for now, so we are going to Disney World. Just for the evening. Haley is hurting but wants to go. She'll be on wheels so it won't be too much of a strain for her. The distraction might be nice. For all of us.

Ketchup or Catch up but never Catsup

Okay, tons has happened since my last post. The rheumatologist did a very thorough exam of Haley, we talked a lot and he ordered a bunch of blood tests. He scheduled a follow up appointment in January and instructed me to call him in two weeks for him to review the test results.

Haley woke up the next Sunday morning with an aching body and fever. She had no energy. I thought that she was getting something like the flu and just gave her motrin for the pain and tried to keep her comfy. On Wednesday her rheumatologist called with some news. I asked him if I should get a pen and he said that would be a good idea. Haley tested positive for ANA, and another antibody SSA/ro which is one of the indicators for Sjogren's syndrome. Sjogren's syndrome is an autoimmune disease that causes your white blood cells to attack your moisture producing glands. Like your saliva glands, causing severe dental problems. The doctor wouldn't have run the test in the first place because of Haley's age, but her dad asked the doctor to test her for it. Why?

Because John watched an episode of Mystery Diagnosis with me that profiled a lady that had it. While that episode sounded like some of Haley's symptoms, I had given up on suggesting potential diagnosises to doctors. But John thought she should be tested and told the doctor just that. Thankfully John did and the doctor listened. First, you should know what a "God thing" it is that John even watched that show with me, I tivo it, but he usually won't watch it. If there 's no one getting arrested, catching a fish or football or fugitive, then it's not something he' ll watch by choice. God put this diagnosis on our minds, and here we are.

Haley would need a Schirmer's test to measure the tear level in her eyes. I don't think she has dry eyes, but less than normal. She would also need a salivary gland biopsy to tell if her salivary glands were being attacked by this syndrome. Not fun and invasive. Her doctor said that he didn't know who to send Haley to for the biopsy or what lab could do the pathology. My head spun a little for the next day while I found places to have the tests done. The eye test was easy, her eye doctor (who she loves) could do it. The biopsy wasn't so easy to figure out.

In the mean time, Haley was still sick and achy. I took her to her pediatrician the day after we got the results, thinking that she might need some antibiodics to get over whatever was making her ill. Well, we found out that what she was having was inflammation caused by something. She needed to be treated by her rheumatologist for whatever this was. She was in so much pain. Her shoulders and arms were the worst. Haley wasn't sleeping and just looked gray. Her rheumatologist called in a couple of different prescriptions that didn't help. He told me that he couldn't give her anything that would interfere with her biopsy. We had to get that biopsy done fast so that he could give her something more effective for her inflammation.

I had a couple of flustered days trying to coordinate everything. Then everything fell into place. The rheumatologist's office helped us get everything lined up. God was so gracious and showed Himself faithful again. The pathology was set, doctors appointments opened up and so did the surgical center. This would happen quickly and she would get some relief when it was over. Done.

Not so fast. There were concerns regarding the specimen getting to the right place and making sure it was handled correctly. At the last minute, the decision was made to put off her procedure an extra three days and change it to the location that the pathology would be handled (a children's hospital). My first reaction was to be upset because that would mean three more days before they could give her treatment for her pain. Then it hit me. This was for the best. Another "God thing". She would be at the best facility and there would be no question regarding the specimen. I was thankful for the change. Then early the next morning the phone rang. Haley's surgeon wanted to do the procedure that afternoon at the children's hospital. She was still sleeping, and hadn't had breafast. It was perfect. We woke her up just before we had to leave. She got dressed and we had our family prayer then left. There was no time for anxiety for her. It would have been so hard for her to fall asleep if she had known that this would happen. God worked it all out. They took great care of her and the biopsy is over.

She's sore. Her throat is bothering her (from the tube while she was under) and the site of her biopsy hurts. Haley's shoulders still hurt too. I just called the doctor because she needs that better medication before the weekend. Yes, I want to know the results. I am not patient right now. At all. A big part of me thinks that the test will be inconclusive or negative. Nothing has been clear cut for Haley. Why should now be any different? Don't think for one minute that I want her to have Sjogren's syndrome. If she has it we need to know to take the best care of her. What I want is an answer that will lead to her relief.

I love Psalms 139. It is reassuring that God knew every bit of this and nothing was secret from Him. He isn't surprised by any of this, any new symptom or pain. He knew that our hearts that are blessed by having our children would break when they are hurting. That's where 2 Corinthians 12:9-10 comes in. His strength has been made perfect in our weakness. When I have been at my absolute weakest moments in the last few weeks, His strength is revealed in huge ways. There is no way that I could walk this without the reassurance that He gives me. It comes from scripture, answered prayers, kind strangers and steadfast friends. It's all going to work together for good. God is worthy of all our praise no matter what.

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.