The way it is.

So chronic illness is just that. Chronic. It doesn't go away and becomes a part of everyone it touches. My daughter hasn't been well in years. YEARS. I never thought about any of our kids getting sick and not getting better. Watching disease take over your child's life is a soul sucking experience. There is no way I can be who I was before all this. Sometimes, I walk around with thoughts of how so few things truly matter in anyone's life. I would give up everything I own, my own life, if my daughter could be healthy. That brings me back to the fact that God doesn't play "Let's make a deal". I wish, but then God wouldn't be God.

Two weeks ago she had two good days in a row. Sunday and Monday. Fatigue and pain didn't take over and prevent her from wearing sparkly eyeshadow and going on an outing with her friend. Hallelujah! Those two days were gold star worthy and I'm holding out hope that more of those days will come soon. It's getting harder to hope like that.

Right now, there are stomach troubles which may or may not be caused by an ulcer. It wouldn't surprise me considering the ridiculous cocktail of stomach irritating drugs she has to take on a daily basis. In two weeks she'll see another specialist that may or may not know what they're doing (because that happens a LOT) with someone like her. Who probably has never seen or heard of a kid having so many problems, especially not her problems. Ulcers are common, right? If it is an ulcer. More likely, she probably has some other rare problem going on that will take no less than four doctors and ten months to figure out. That's what I expect because that's how we roll. Too much of her life has been spent in pain while medical science fails her. It's happening at this very moment.

I'm done for now. Autoimmune disease sucks. I'm hormonal and exhausted from watching my girl suffer more than usual the last few nights. The doctor finally decided to refill her pain medication so she is sleeping and I'm going to sleep and read my Bible in the morning and ask God to help us out here. This is the way it is right now.

Just this much.

So it's been a while since I've posted. Things have been difficult, and while writing usually helps me keep things in perspective, it's something I haven't been able to do. During the last six weeks Haley's pain has continued to escalate. She is limited in what pain medication she can take because of stuff she already has to take. We try to comfort her, keeping her calm and semi-distracted because that's all we can do. It's not all we can do, because we pray constantly. That's a lot because I know God still hears our prayers, but it feels like we should be doing much more when prayer for our Mighty God's healing is the most we can do.

Just over a week ago, a wonderful specialist in Atlanta has agreed to see Haley. We beat our heads against walls trying to find a doctor that would see her for the polychondritis and were rejected every time until this doctor. We are praying for him to be healthy, and for him to have wisdom when he sees Haley on July 28th. It was so miraculous for him to see her next month. We waited the entire summer last year for an appointment for her to see a pediatric rheumatologist. This would feel like nothing in comparison if it wasn't for her nose.

Her nose is where this whole polychondritis stuff started. For months, like since at least December, she would frequently complain of pain in her nose. I thought she had a pimples in it or maybe it was a side effect from something she was taking. It did look reddish at times but didn't seem like a big deal at all. When I finally remembered to mention it to her doctor, I quickly knew it was a big deal and that he should have known about it sooner. Last month, he did try to treat the inflammation by tripling her dose of prednisone for two weeks, but that didn't help and the side effects were horrible for her. He then decided that this was more than he could handle and gave us more names to contact. Now, after much (and I mean MUCH) prayer and waiting, she has an appointment with a big time rheumatologist that I believe will figure her out. But right now her nose is still what we refer to as "angry". Reddish, swollen and inflamed. The shape of her nose is changing. She is losing cartilage. We are praying for her cartilage to be healed and for this attack to stop. Now.

Still in all of this God is here. He gives us rest and we have peace in knowing that He is in charge. My heart breaks because my child is in pain but God knows that. There is a purpose in all of this and He still shows himself to be faithful and worthy of our trust. We have been given encouragement from strangers and really amazing friends in surprising ways that are clearly from Him alone. Haley is proof of God's grace being sufficient. We are so blessed.

Lamaze breathing, spiritually speaking

So you've probably noticed it's been forever. If there is a "you". Things have been smoothly going along for the most part. Haley and her brother got "real" cell phones. I say real because they had pay as you go type phones after the washing machine incident where someone proved he wasn't ready for the responsiblity/privilege of having a cell phone. That's about as exciting as things have been . Nice and calm. Haley has had lots of dental work done already this year. Even some cosmetic work for the first time ever. She has been mostly feeling much better. Occasional joint pain but more frequent pain in her nose. Not like sinuses, but her nose itself. It's been reddish, changed shape and seem swollen. I finally remembered to ask her doctor about it. Maybe it's a side effect of Prednisone? Maybe she's allergic to it?

Nope. Her nose is inflamed. More specifically, her cartilage is inflamed. Her ear has been as well. Not often, but she had this bright red swollen spot on her ear a week or so ago. Her doctor examined her and said that he suspects it might be relapsing polychondritis. I know because I wrote it down. He said it's "even rarer than Sjogren's and good luck finding someone that knows enough about it to diagnose it". Of course it's rarer, of course it's hard to diagnose. Of course. He said to start with an ENT. We scheduled her next appointment and left.

By the time we were in the car, my chest felt all tight. The weight of something new was on me already. I had never heard of relapsing polychondritis and had no idea what it was until I called John. Then he Googled it. PSA time: the time to find out about a new diagnosis that your child may or may not have is not when you have to drive an hour or so while trying to digest information that you never wanted to hear. But I was mostly calm and okay to drive. Then the analogy hit me. This is like Lamaze breathing.

When Julia, our oldest was on her way, I took Lamaze classes. Do they still call them that? Anyway, it was about using a focal point to help you focus on staying calm, and using breathing techniques along the way. Basically, it worked for three deliveries, two of them without any medication at all. If I could stay focused and breathe then the pain wouldn't overwhelm me and I would be okay. There would be times that John would lean on the bed and it would shake my focus and I would start to be overcome with pain and panic a little. I delivered three babies without a scream, yell or moan because I was so focused on staying calm.

So I've been trying to practice Lamaze breathing of a spiritual variety. If I am focused on God, and knowing that He is wonderous and all knowing, that He alone has designed my child with a perfect plan, then I have His perfect peace and can be calm. It's really easy to lose focus and feel that same sort of pain and panic overwhelm me but I don't have to. He has given me so much grace and my hope is in Him. He's given me such a gift, to know His power is such a blessing.

We are in the middle of waiting on doctors and really don't know what comes next. The ENT suggested we find a specialist that can diagnose relapsing polychondritis. Yesterday I put it squarely back into the lap of Haley's doctor. I'm expecting him to call but he hasn't. Maybe he's looking for a specialist, maybe he isn't. I'll give him a call tomorrow to see what we do next. But tonight, I'm sleeping. Update to follow

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.

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.

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.