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

This is about the kids, right?

Friday started a weekend experience for the youth at our church called "Straight up Weekend". Our theme this year was doulos (bondservant in Greek). It was all about the importance of us becoming servants to others in the name of Christ. In order to serve effectively we can't focus on ourselves. There are so many things that can distract us from doing what we should to help others. Most of them can be quickly overcome if we want those obstacles out of the way. But we have to make a choice.

Through the weekend there were six girls in my group. Being a facilitator is sort of like being a youth leader through the weekend, all of the weekend to a very small group. We were able to really talk about and digest the messagess together. They really understood and absorbed what was being given to us this weekend. We had the blessing of getting to work on a service project together. We cleaned the home of a 94 yr. old man who had been up sewing clothing for migrant children most of the night. He showed us the clothing he had been making. Little jumpers, sun suits, shorts and shirts. He was really good at it. It was a blessing to be able help someone that was helping others. I can't go into much detail, but the girls in our group were great girls. We had so much fun together and they were so spiritually awakened by the weekend. They carry heavier burdens than we expect sometimes, but hopefully, they ended the weekend a little lighter. I sure did.

Haley started off the weekend feeling badly. On Friday afternoon she was crying in pain. This weekend she would be staying with a group of her friends and her Bible Fellowship (Sunday School) teacher. She wasn't going to miss it no matter how much pain she was in. Friday, she spent the day under a heating pad and took some extra pain medication. The girl was packed, ready to go and no pain would stop her. We had been praying for weeks that she would be pain free for the weekend. Either she stopped hurting or it didn't matter because she enjoyed the weekend so much. It was a gift to see God's grace help her through so that she could participate and even serve during the weekend. My kids all had a great time and learned so much.

Then there's me. Friday night I arrived at the church in tears, worried about Haley. Starting the weekend off with a distraction wasn't a good thing, my mind needed to be clear and ready to focus on what we were doing. Then Friday night's service started. First, there was great interpretive dance done by some really gifted girls, to the Brandon Heath song "Give Me Your Eyes". Then Matt Papa's band lead us in worship followed by Matt Speaking. We sang about God's mercy and power. At one point during worship, Matt spoke of worshipping God, and it being the end result of everything. It's what God longs for and what I should do more of. Then the message was about taking the focus off ourselves and putting it on God. We involve ourselves in self worship too often. We meaning "I". Without even knowing it. Throughout the evening, little truths kept adding up to a big one. This is big and it has changed me. Taking a weight off me that has been there as long as I can remember. Here goes.

Haley's problems are not something that God has "allowed" to happen. Haley's problems are part of God's plan. She came to us exactly the way God wanted her to be. The one thing that has been consistent no matter how painful or difficult things have been for Haley is God's faithfulness. He has shown His power, His mercy and His love for us in every situation, in every trial He has been faithful. He has been glorified in our darkest times. Haley is walking, talking evidence of God's care and kindness. I've always thought that there was something for me to learn, some growing that I needed to do. That the reason my daughter has all this stuff was about me needing to do something. Finally, it's not about me, or us. It's about God and His plan to demonstrate how wonderous He is. I think that's the plan. Haley isn't a victim of everything going on in her body. She is fearfully and wonderously made just the way she should be. It has taken forever for me to get it.

Well it's been a while...

This blog has been a bit neglected. It's pretty much just been here as a dumping ground, and I don't seem to visit unless something new is happening with Haley. Pretty much it's been more of the same for her. The good news is that the medication she has been on is still working. She sees her rheumatologist next week and he'll be letting us know what will happen next in that respect. Hopefully, he's found a few other pediatric Sjogren's patients somewhere that he could get a little more treatment information from. The thought of her on Prednisone for too much longer. It's pretty scary stuff. We'll see.

Yesterday was a visit to Shriner's Hospital. You all know (if there is even a "you"?) that I love the Shriners, they took good care of her again. Her curves have increased more than they'd like to see. Considering how little she's worn that brace, it's understandable. Everyone has a breaking point, and that brace has been hers. For now, they recommended water physical therapy. With her also having the Sjogren's, Ehlers Danlos syndrome and hypotonia (low muscle tone) the therapists there thought water therapy was the safest. So I'm looking. Haley's just glad she doesn't have to wear the brace for now.

Our next stop was to see Dr. L (aka, world's best dentist!) because I noticed a new cavity last week. Actually she had two. That's how fast things go badly in her mouth. Her amazing dentist fixed everything with the least pain and we were off. The dentist had printed me out an article about the oral issues of Sjogren's patients. I started to read it in the office but thankfully, finished it at home. It contained helpful information but also information that shook me pretty good. I've read this before but choose not to acknowledge it. Patients with Sjogren's syndrome have a "twenty-fold" increased chance of developing lymphoma. Not fun to read about your child. The patients studied are generally 40-60 years old, so no one knows what to expect with patients Haley's age. Again, I choose not to think about it. But for some reason, the thought has been creeping in more than I'd like it to. God has been so good to us, and He's given me the most peace that I think any parent of a "special edition" could have. I read Luke 12 today. Verses 22-26 really helped me. Wasting time worrying won't add an hour to anyone's life. That's a good lesson for me. My trust is in the Lord.

Update and Blessings

Things have been really good around here lately. We are getting ready to celebrate Christmas and have been enjoying the festivities that pop up along the way. The kids are all doing well. Haley's medication is still doing the job. Now the challenge is to get her back into her sleeping brace on a more regular basis. She had an echocardiogram on Monday. Her heart looks normal, with the exception of a right arching aorta? Apparently it should be arching to the left. We go back to the neurologist on the 29th to review the results, so we should learn more about it then. Hopefully.

Today was the day that our oldest daughter Julia's Bible Fellowship department went to be a blessing to a needy family. She invited me to come at the last minute. We don't often get to do something like that together, so I went with her. They have an open invitation to families every year. This year I would be the only family member to come this time. At first I felt a bit like a fifth wheel but then we arrived at the family's home in Wimauma.

The sweet family that we visited had six children there with them, in a tidy one bedroom apartment. Their adult daughter, Margerita was there too, in the bedroom in a hospital bed. She was beautiful. Blind and bedridden, she has never seen her own eight year old daughter's face. Margerita was suffering the effects of MS and was a sick lady. Did I tell you how beautiful she was? I told her so (through a translator) and told her that I would be praying for her. Her older sister sat in the room with her while everyone else tried to squeeze into the family's main room. I stood near a familiar looking wheelchair that was tucked behind an open door. The family spoke Spanish primarily, and we were blessed to have missionaries to Mexico join us for the day. The kids gave the family members the gifts they had chosen for them, decorated a tree for them, read some scripture in Spanish and sang with them. Then it was time for us to leave and we asked if there was any special needs that we could pray for. They only had one prayer request, for their sick daughter to be well.

Sound familiar? In that moment, I saw myself standing in their shoes, full of worry over their sick girl. My hear broke for them, knowing their pain so well. We all held hands and prayed for the family, especially for their Margerita. After we prayed for them, the father wanted to pray too. He lifted his hands and prayed to God with words I couldn't understand but with a spirit that I knew well. That was a once in a lifetime experience. I promised the parents to pray for their daughter. They hugged and kissed me and we left. Back on the bus I couldn't speak without crying, in front of a bunch of eleventh graders that probably didn't notice. Julia's invitation was to go and be a blessing. The blessings were mine in the end, along with the reminder to count them more often. God is good.

Please pray for Margerita and her family.

Still here

It's been a while. We've had a couple of good weeks. Haley's been thoroughly accessorized and wearing too much frosty eyeshadow. That's how I know she's feeling good. She is never completely pain free, her shoulders always hurt a little. Her doctor prescribed new medication that will hopefully work in 12 days. That's the magic number of days before this medication works. If it works. She's achy and feels hot today. Her shoulders, arms and hands. She is exhausted and has no energy. I'm praying it's just a cold and not another flare up.

Thanksgiving was yesterday. All week I have been feeling the loss of Pastor Forrest and Simeon. My heart aches for their families, missing them and Preston this first Thanksgiving. My prayer is that they can feel God's loving arms around them so tightly. This year has made me appreciate every big and small family gathering in a new way. We are so blessed.

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.