tag:blogger.com,1999:blog-75992905667738216482024-02-08T07:38:53.618-08:00Mystery's MotherOur greatest medical mystery was solved after almost 17 years when we found out that our youngest daughter was born with Chromosome 22q11.2 Deletion Syndrome. This is the blog that I started keeping during the last three years of that journey and I still post when I have something to get off my chest. I'm just a mom trying to find joy and peace while trying to help my youngest daughter feel better as we enjoy every good day that comes our way.Erikahttp://www.blogger.com/profile/01084667108487665211noreply@blogger.comBlogger27125tag:blogger.com,1999:blog-7599290566773821648.post-52741896181843829672013-02-07T09:27:00.001-08:002013-02-07T09:36:53.873-08:00Days like these.We still have eye pain, but no diagnosis. She has (sort of) been to see two doctors in the last 24 hours. The first was yesterday morning. The specialists that she usually sees at a huge practice were all booked up so they were able to squeeze her in with another doctor that she hasn't seen before. He was super nice, but proceeded to tell me that they needed to put silicone plugs in her eyes to keep the tears from draining. He was convinced, from reading her chart, that she was having dry eye pain. He then proceeded to talk about her bladder? and different ways to flush out her eyes. When I reminded him that he hadn't looked at her eyes, he humored me and took a quick peek. What? We left without a thorough examination or any answers as to why she is having so much pain in her eyes. <br />
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I called the optometrist that our family uses at a different clinic after speaking with the rheumatologist about what specific tests needed to be done. The person that scheduled us said that they could do those tests, so after another painful night, I woke her up bright and early for another appointment. When we went back for her to be examined by that doctor, I explained that we needed to rule out Uveitis, and she informed me that she wanted to get my daughter scheduled with a retina specialist (who she has been to in the past) because she wanted her to have more testing than what she could do in the office. So, we now have an appointment tomorrow morning with the specialist I probably should have called in the first place. Three appointments with three different doctors on three different days for the same issue. In all her years of dealing with health issues, this was a new one for us. </div>
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My sweet, strong daughter sat down in the car and proceeded to have a very well deserved melt down. It doesn't happen often, but every once in a while she just has enough. Really, who wouldn't? She came home to have her favorite lunch of sushi followed by a long nap. Tomorrow she will start all over again. Visit the doctor, go through tests and hopefully get some relief. </div>
Erikahttp://www.blogger.com/profile/01084667108487665211noreply@blogger.com0tag:blogger.com,1999:blog-7599290566773821648.post-30623191670268635252013-02-05T20:03:00.001-08:002013-02-05T20:11:13.138-08:00I really wanted to go outside and scream but I'm writing insteadSo I haven't touched this blog in years. I'm here and not very happy about it. Tonight the weight of my daughter's most recent diagnosis is weighing on me. Getting the "big" diagnosis, <a href="http://ghr.nlm.nih.gov/condition/22q112-deletion-syndrome" target="_blank">22q11.2 Deletion Syndrome</a> , wasn't the end of the story. It just means that more and more will go wrong. I'm not being pessimistic. This is our reality.<br />
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We had been skating along as much as we have in years( "skating" means coping after three separate reconstructive surgeries on her eyelids this summer and every other diagnosis she already had) when some new painful symptoms popped up. She was having lots of lower back and hip pain, as well as limitations in how well she could bend. This went on for a month before I remembered what I tried to forget and called her rheumatologist. You see, over a year ago, she tested positive for antigen <a href="http://emedicine.medscape.com/article/1201027-overview" target="_blank">HLA-B27</a>. It is an indicator of some pretty nasty stuff and after I googled it and realized that not everyone that has the antigen develops problems, I decided to put it out of my mind and deal with the problems of the here and now. I successfully put it out of my mind to the point that I didn't realize that the red flags were flying.</div>
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After over a month on Meloxicam and a short course of steroids, she had an MRI of her pelvis to check her sacroiliac joint for inflammation. Her rheumatologist called that night to tell us that the MRI showed inflammation, thinning of the joints and edema. The diagnosis is <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001457/" target="_blank">Ankylosing Spondylitis</a> and Sacroiliitis. The nasty stuff was here and raging. A week later she started on an injectable drug called Enbrel which has the potential for another set of nasty side effects but it's the weapon of choice against <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001457/" target="_blank">Ankylosing Spondylitis</a>, so we don't have a choice. I am especially thankful that our insurance plan and her Medicaid pay for it together. The cost of her first month was 2,284.00. Tuesdays and Fridays are her injection days. Even when I let the medication warm up to room temperature, it still burns going in. I'm not certain that I'll ever be okay with giving her shots but it's what we have to do. Today was the beginning of the third week on Enbrel. She now takes Celebrex for the pain and inflammation too. Now we just wait to see if this is all going to work.</div>
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Yesterday she started complaining that her eyes hurt. We are passing around a little cold so I really wanted to believe that she was just uncomfortable from that. Then late this afternoon she started complaining again. This was after her eye doctors' office stop answering their phones. Things like this always happen after hours. Now her eyes are aching and burning. She doesn't know this but there is an inflammatory eye condition called <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002000/" target="_blank">Uveitis</a> that can go along with Ankylosing Spondylitis. The only thing that is ever remotely positive about having an intellectually disabled child is that they don't know to google their disorders and find out how bad they can get. I will call the doctor in the morning and she will go through whatever uncomfortable tests she has to go through and probably end the day with another diagnosis. We will just put one foot in front of the other because that's what we do. </div>
Erikahttp://www.blogger.com/profile/01084667108487665211noreply@blogger.com0tag:blogger.com,1999:blog-7599290566773821648.post-65584756390902695612011-03-21T16:33:00.000-07:002011-03-21T17:07:44.361-07:00Long time in comingIt is time for me to close this chapter of the story. The new specialist that I mentioned in my last post was the one that would hold the last piece of the puzzle for us. This one significant trip to see doctors less than three hours away would be the turning point. God allowed them to recognize symptoms of a specific chromosomal abnormality, <a href="http://ghr.nlm.nih.gov/condition/22q112-deletion-syndrome">22q11.2 Deletion Syndrome</a> or Velocardiofacial Syndrome or DiGeorge Syndrome (they are all pretty much the same thing). When I first looked up a little basic information on the syndrome I was shocked that EVERY SINGLE thing that has been an issue from the day she was born was on the list. I have done many, many internet searches over the years, with every combination of her symptoms, and had never heard of this syndrome. It has over 180 known manifestations and complications. It can affect every system in the body. She had thirty or so of the issues when we went down the list. That's about typical, from what we read. We waited for a very specific genetic test to be done, and two days before her seventeenth birthday we had our answer. Our baby girl had been born with a special edition, designer chromosome. Her 22nd chromosome is missing one tiny little band of genetic information. <br /><br />After years of wondering why so many things would go wrong with her, why she was the one with all of these issues, we had our answer. This was the first time that God answered a prayer in a way that broke my heart. This diagnosis would mean that no magic pill would ever fall from the sky and fix everything. There was something so profound and final about the diagnosis for me. It meant that this is how she was fearfully and wonderfully made. Her issues weren't by accident, some unexplained phenomenon. It was a lot for me to absorb. I'm still absorbing.<br /><br />I can now tell you what's good about having this diagnosis. It means that if another issue pops up, her doctors will have a starting point in treating her. She won't be an experimental project for them any longer. It also changes some of her diagnoses, she doesn't have the super scary Polychondritis. That's a big one. The rheumatologists ruled that one out. She doesn't have Ehlers Danlos Syndrome, she just has super stretchy joints from the 22q. She does still have Sjogren's, however it is in some sort of pseudo remission, and isn't actively attacking her body right now. That is a good thing. She is off all steroids and everything that was suppressing her immune system. She has been seen by a cranial facial surgery team and is being treated very effectively by a neurologist at a movement disorder clinic. She has begun to live a more "normal" life. If there is such a thing. "Normal" could still walk in the room and slap me in the face, and I still wouldn't recognize it. That's how we like it.<br /><br />So, why did it take almost seventeen years to diagnose the second most common chromosomal abnormality after Down's Syndrome? From what we have experienced since she received the diagnosis, most doctors aren't the least bit familiar with 22q Deletion Syndrome. Seriously. I carry around brochures about the syndrome to give to anyone I happen to come across having anything to do with the medical field. I hate to think that there are other families out there on the same ridiculous merry-go-round that we rode for so long, waiting for answers. I don't fault any doctor that missed it, because that's just the way it is. I want to see that changed. Yesterday.<br /><br />One thought that has given me peace is that had we known of this diagnosis at her birth, maybe I wouldn't have pushed her to learn. It took two summers of hard work for her to learn to read. I would like to think that I still would have worked with her so hard, but I don't know. God decided that this was the time, and I'm thankful to finally have the answer. We learned a lot about His power and grace during some really difficult times. There will surely be more of those times, but we know that He will see us through.Erikahttp://www.blogger.com/profile/01084667108487665211noreply@blogger.com0tag:blogger.com,1999:blog-7599290566773821648.post-4253105683039904282010-06-09T21:03:00.001-07:002010-06-09T21:29:40.309-07:00The 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. <br /><br /> 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. <br /><br />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.<br /><br />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.Erikahttp://www.blogger.com/profile/01084667108487665211noreply@blogger.com0tag:blogger.com,1999:blog-7599290566773821648.post-17818456979329875362009-11-22T12:26:00.000-08:002009-11-22T18:56:53.083-08:00Maybe medicationWe're still not on the right track to helping her feel better. The last month has been one of constant pain and fatigue for her. She had her first infusion of Solumedrol by IV with the hopes of ending this continuous flare. That didn't work. She's been on 40 mg. of Prednisone(along with everything else) for a while now and nothing is getting better for her. Then last week her doctor called and suggested that we have a consult to talk about new medication options. He talked to me on the phone a couple of weeks ago about the next level of medication that he thought we needed to try but because of the risky nature of the side effects he asked me to come in so that we could talk face to face.<br /><br />Her tiredness had increased quite a bit after the Solumedrol infusion. According to the fact sheet they gave me, it should have ramped her up a little bit if anything. Because they drew blood to test it during the IV procedure, I asked about the results when I arrived for the consult thinking that perhaps she was a little anemic. The doctor didn't order the blood test and didn't know it had been done, so he hadn't checked for results. Something was off in her test. Something called Sed rate. Apparently that Sed rate is an indicator of inflammation in your body. Normal for her would be between 0 and 20. Her Sed.rate is 140. The doctor said that she would have to feel horrible with that kind of inflammation in her body. He had suspected that she has vasculitis somewhere, and this confirmed it for him. So we went from thinking she was really sick to knowing she's really sick. It took away any doubts that she needed to be on a new medicine. One that has some scary side effects that I prefer not to think about, but they are there. Her doctor said that in his whole rheumatology practice that he might have ten kids that are sick enough for him to put on Imuran and she's one of them. Having the test results that leave no doubt that she needs this new medication gave me a little peace about it. It's another example of God's hand guiding us through all this. <br /><br /> My prayer is that this medicine works, and that she might be able to stay on a low enough dose to reap the benefits without the risks. I love this girl. She needs a life of happiness, the Jonas Brothers and frosty eyeshadow. If this is a means to that end then we will be beyond blessed.Erikahttp://www.blogger.com/profile/01084667108487665211noreply@blogger.com0tag:blogger.com,1999:blog-7599290566773821648.post-35473427443376880132009-10-30T07:09:00.000-07:002009-10-30T07:26:06.943-07:00Alrighty thenThe doctor FINALLY called, apologizing for his terrible phone system. He raised her Prednisone to 40 mg., which is the highest dose she's been on since her Sjogren's diagnosis a year ago. He said that there was a dramatic difference in the body's response when you go from 30 to 40 and thought she should see some improvement in a couple of days. Why then, did he not try this dosage a long time ago? He has admitted that because she is dealing with issues that he doesn't regularly treat that he may not be as aggressive as a rheumatologist that sees adults would be. She'll be seventeen in less than a year and that's the magic number when an adult rheumatologist will see her. Other than his phone system, I have no complaints about her doctor. Pediatric Rheumatologists are in very short supply (would you believe there are 10 states WITHOUT one) so I understand why it's hard to get in touch with him sometimes. Most likely, I'll be scheduling her to see another doctor the day after her seventeenth birthday. We need aggressive.<br /><br />I finally found the saline gel that the ENT recommended for her nose. Not sure it's helping, but that along with saline spray and a vaporizer in her room will hopefully keep her more comfortable. Her lips have been less chapped since we started keeping her room "moister" and reducing the use of our air conditioning system. The nosebleeds continue but are less frequent. I almost feel like she should live somewhere that was steamy like a green house. We see 100 percent humidity often so I shouldn't complain.<br /><br />Tonight she's going to a sleepover with her Sunday school class. A little more fun in her life would be a good thing.Erikahttp://www.blogger.com/profile/01084667108487665211noreply@blogger.com0tag:blogger.com,1999:blog-7599290566773821648.post-78734946381443960852009-10-27T18:11:00.000-07:002009-10-27T18:16:16.219-07:00Camp Boggy CreekHaley's rheumatologist handed us an application for us to go to a family weekend at Camp Boggy Creek on her last appointment. I filled it out not knowing just what to expect. When she was accepted to go for the weekend, I was excited but a little apprehensive as well. Camp Boggy Creek provides fun time away for kids/families dealing with some type of chronic illness. It's funded by Paul Newman Charities and other private donors. The weekend we were there for was the Juvenile Rheumatoid Arthritis and other rheumatoid conditions weekend.<br /><br />For the last month Haley has been feeling pretty bad. Her relapsing polychondritis is flaring again and she's been dealing with a lot of pain. She has a new foot injury that is adding more pain to the mix. Not good. Last week, just before we went, her doctor made some adjustments to her medication that has given her some relief. He wanted her to feel better for Boggy Creek. He warned me that most people that would be there wouldn't know anything about what Haley has yet alone have any of her issues. He said that there would be kids there that had dealt with the horrible side effects from her meds though, and that she would still have fun. He kind of gave me a nice little pep talk.<br /><br />We arrived on Friday evening and Haley's pals Colin and Dahlia were outside the cabin waiting for her. Dahlia was a psychiatry resident who would have a lot of jobs to do during camp, but would hang out with Haley when she could. Colin was a college senior from Kentucky who's fraternity flew him (and other members) in to volunteer for the weekend. Colin would be with her/us for the whole weekend just to make sure that Haley was comfortable and had whatever would make her happy. Whatever Haley wanted to do, Colin did. I don't know his parents, but they should be so proud of the caring young man they've raised.<br /><br />From the time we got there, every minute was about the kids and families having fun. There was so much downright silliness that you couldn't help but laugh. A lot. Friday night was dinner, ice breaker activities and a camp fire. Saturday was full of activities, including time when Colin took the kids to do whatever they did while John and I went to a time for just the parents. This was the only time when there was talk of conditions, medications and the hardships of having a sick child. They separated the men from the women for this time. We thought that the boys would talk for about ten minutes then watch football. John said they talked the whole time. Not sure what went on there. As for my time with the women, it was really good. We cried for each other's children and for our own. There was something very special about that time and I was really blessed by it. These were all moms of kids that lived with pain too much of the time. There's a part of you that can't be okay when they are hurting and those women were right there with me. I didn't count on having that kind of experience and it was really a blessing.<br /><br />After dinner Saturday night Haley was really in pain and wanted to put her pajamas on at 7:30. I had given her everything I could for pain at that point and knew that she needed to go home and to her bed. She was positively drained and had that look on her face that a mom just knows isn't good. We had to leave camp early. I was crying as they hugged me and told me that they understood. They drove me to pick up my car and I was still crying. I want my girl to be well and she isn't. It was so disappointing that we needed to go. Then I started to look through the photos that we took from just that day. She did more fun stuff in one day than we've done in a long time. She did have the best day, she laughed lots and really enjoyed herself. God really gave me peace in that moment. Maybe we can't do so much at once, but we need to do more to enjoy life, even if it's at a little slower pace. That's the biggest lesson I learned this weekend.Erikahttp://www.blogger.com/profile/01084667108487665211noreply@blogger.com0tag:blogger.com,1999:blog-7599290566773821648.post-61071343150757939982009-10-14T10:31:00.000-07:002009-10-14T10:55:59.648-07:00LearningThe last month or so has been a huge struggle. There are no words that can explain what it's like watching your child suffer in pain. You do not get used to it and it doesn't get any easier, that's for sure. The fact of the matter would be that it gets HARDER every day that she is in pain. I wish it was me that was dealing with all this, but God doesn't play "Let's make a deal". He won't let us trade places, even though my sweet girl said that I wouldn't want to even if I could. <br /><br />Even in these difficult days there have been blessings. One would be that Haley has been invited to Camp Boggy Creek for us to go for a family weekend with other kids nad families dealing with rheumatic disorders. Her doctor said not to expect to see any other kids there with her diagnoses, but that they would have other things in common like pain and having to take the same medication. That sounds pretty bad, but it would be nice for her to meet someone that she could identify in that way. I also hope that she has other things in common with people she meets there. Things like Twilight, Harry Potter, Miley Cyrus and sparkly eyeshadow. We'll see how it goes.<br /><br />Just yesterday, her doctor called me to increase her Prednisone and double up on her pain medication in order to get the polychondritis under control and to ease her pain. We seriously hate the Prednisone part, but reducing that pain sounds great. Her stomach has been doing much better, hopefully that will be okay still with the increase in her steroids. Next week she sees another specialist for her ears. The ringing has gotten worse and they need to check the structure to make sure that her ears aren't being affected by the polychondrits. <br /><br />Goodness, it seems that there's a whole lot going on in her body. I still know that she was wonderfully made and that her Creator designed a perfect her. Knowing that doesn't make me able to accept her pain. Having faith that God is in control doesn't mean that I can sit around and just wait for things to happen. It means seeking Him and asking for doors to be opened for the best care possible. My prayer is that she lives a big full life that doesn't include pain. That's all I want.Erikahttp://www.blogger.com/profile/01084667108487665211noreply@blogger.com0tag:blogger.com,1999:blog-7599290566773821648.post-1864880279666716002009-09-20T07:42:00.001-07:002009-09-20T07:59:11.699-07:00SummerGood grief, I haven't written in a long time. To be honest, the summer came and went with not much fun or excitement. I had big plans of fun outings to take my kids on but nothing much came of them. Guess having a kid that doesn't feel great can do that if you aren't careful. I wasn't careful that way this summer. Not one trip to the beach, not one fun family getaway. We did make it to see the specialist in Atlanta. That was a blessing in itself, but not fun. <br /><br />The doctor in Atlanta suggested that we get her dosage of Prednisone down and that would help her cope with the pain as well as reduce her risk of harmful side effects. We were able to get her from 15 mg. per day to 8 mg. per day before things started to get bad again. The doctor thought that reducing that drug would also tell us whether she does indeed have the Relapsing Polychondritis or not. Unfortunately, as of this week, she's back on the high dosage of Prednisone and that diagnosis has been confirmed. Her nose is inflamed again, her joints are achy, she has a headache. Her stomach is bothering her from all the meds. She isn't sleeping. I hate this. <br /><br /> Probably for reasons of a hormonal nature, I've not coped with this news well. Not at all. My faith is still strong, but I'm not being comforted right now. Maybe because I'm not in a place to be comforted. My child is hurting and I'm just sad. That's okay for now but I can't stay here long. I know His strength is made perfect in my weakness. I know He's here and cares for us. I know it all but am just in a bit of a low spot. Sometimes the sadness of it all is just overwhelming. It doesn't happen often but when it does...<br /> <br /><br />Good thing it's still hot here. We need to go to the beach.Erikahttp://www.blogger.com/profile/01084667108487665211noreply@blogger.com0tag:blogger.com,1999:blog-7599290566773821648.post-53128440383144203002009-06-12T10:10:00.000-07:002009-06-12T10:31:18.292-07:00Just 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.<br /><br />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 <span id="SPELLING_ERROR_0" class="blsp-spelling-error">polychondritis</span> 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 28<span id="SPELLING_ERROR_1" class="blsp-spelling-error">th</span>. 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 <span id="SPELLING_ERROR_2" class="blsp-spelling-error">rheumatologist</span>. This would feel like nothing in comparison if it wasn't for her nose. <br /><br />Her nose is where this whole <span id="SPELLING_ERROR_3" class="blsp-spelling-error">polychondritis</span> 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 <span id="SPELLING_ERROR_4" class="blsp-spelling-corrected">tripling</span> her dose of <span id="SPELLING_ERROR_5" class="blsp-spelling-error">prednisone</span> 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 <span id="SPELLING_ERROR_6" class="blsp-spelling-error">rheumatologist</span> 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.<br /><br />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.Erikahttp://www.blogger.com/profile/01084667108487665211noreply@blogger.com1tag:blogger.com,1999:blog-7599290566773821648.post-41875084959501488732009-04-28T19:45:00.000-07:002009-04-28T20:16:58.835-07:00Lamaze breathing, spiritually speakingSo 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?<br /><br />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. <br /><br />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.<br /><br />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. <br /><br />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.<br /><br />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 followErikahttp://www.blogger.com/profile/01084667108487665211noreply@blogger.com0tag:blogger.com,1999:blog-7599290566773821648.post-19797373303259323872009-02-09T09:42:00.000-08:002009-02-09T10:16:31.345-08:00This 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. <br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.Erikahttp://www.blogger.com/profile/01084667108487665211noreply@blogger.com0tag:blogger.com,1999:blog-7599290566773821648.post-59002369979510342832009-02-03T19:14:00.000-08:002009-02-03T19:40:35.221-08:00Well 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.<br /><br />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.<br /><br />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.Erikahttp://www.blogger.com/profile/01084667108487665211noreply@blogger.com0tag:blogger.com,1999:blog-7599290566773821648.post-64318407278999742242008-12-21T21:57:00.000-08:002008-12-21T22:29:20.314-08:00Update and BlessingsThings 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.<br /><br />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. <br /><br />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.<br /><br />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.<br /><br />Please pray for Margerita and her family.Erikahttp://www.blogger.com/profile/01084667108487665211noreply@blogger.com0tag:blogger.com,1999:blog-7599290566773821648.post-46924498121965937652008-11-28T22:10:00.000-08:002008-11-28T22:23:05.364-08:00Still hereIt'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.<br /><br />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.Erikahttp://www.blogger.com/profile/01084667108487665211noreply@blogger.com0tag:blogger.com,1999:blog-7599290566773821648.post-54745484612283793742008-10-17T09:49:00.000-07:002008-10-17T10:52:10.072-07:00mystery no more<div>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.<br /><br /> 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. <br /><br />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.<br /></div>Erikahttp://www.blogger.com/profile/01084667108487665211noreply@blogger.com2tag:blogger.com,1999:blog-7599290566773821648.post-25719564444862605632008-10-16T08:02:00.000-07:002008-10-16T09:07:41.941-07:00Ketchup or Catch up but never CatsupOkay, 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. <br /><br />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?<br /><br /> 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.<br /><br />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. <br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br /> 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.Erikahttp://www.blogger.com/profile/01084667108487665211noreply@blogger.com2tag:blogger.com,1999:blog-7599290566773821648.post-64673362749349884652008-09-22T06:04:00.000-07:002008-09-22T06:31:24.329-07:00an epiphany of sortsToday 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.<br /><br />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.Erikahttp://www.blogger.com/profile/01084667108487665211noreply@blogger.com0tag:blogger.com,1999:blog-7599290566773821648.post-39691924963664461222008-09-19T04:25:00.000-07:002008-09-19T10:00:49.460-07:00The HandsThe words "sleeping brace" for scoliosis are a little misleading. Here's what a <a href="http://tinyurl.com/sleeping-brace">Providence brace</a> 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Deenie</span>, 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.<br /><br />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 <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Shriners</span> 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.<br /><br />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. <br /><br />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 <span class="blsp-spelling-error" id="SPELLING_ERROR_2">EMG</span>/<span class="blsp-spelling-error" id="SPELLING_ERROR_3">NCV</span>. The <span class="blsp-spelling-error" id="SPELLING_ERROR_4">EMG</span>/<span class="blsp-spelling-error" id="SPELLING_ERROR_5">NCV</span> 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_6">rheumatologist</span>. 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. <br /><br />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. <br /><br />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.Erikahttp://www.blogger.com/profile/01084667108487665211noreply@blogger.com0tag:blogger.com,1999:blog-7599290566773821648.post-76681287343386406582008-09-17T20:25:00.000-07:002008-09-18T06:54:17.936-07:00Fez LoverFor 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_0">for me</span> 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.<br /><br />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 <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Shriners</span> was the best place for her. Here's the miracle.<br /><br />They said we should apply then wait to see if she would be accepted for treatment. Check back in a few months. <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Shriners</span> 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">received</span> 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.<br /><br /><span class="blsp-spelling-error" id="SPELLING_ERROR_4">Shriners</span> 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.<br /><br />Oh, and we love the <span class="blsp-spelling-error" id="SPELLING_ERROR_5">Shriners</span>. 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?Erikahttp://www.blogger.com/profile/01084667108487665211noreply@blogger.com0tag:blogger.com,1999:blog-7599290566773821648.post-32642055717437023352008-09-16T19:20:00.001-07:002008-09-17T04:55:13.546-07:00Pearly WhitesAfter 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.<br /><br />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 <span class="blsp-spelling-error" id="SPELLING_ERROR_0">hypotonia</span> (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.<br /><br />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 <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Shands</span> at <span class="blsp-spelling-error" id="SPELLING_ERROR_2">UF</span> in <span class="blsp-spelling-error" id="SPELLING_ERROR_3">Gainesville</span>. 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.<br /><br />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. <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">Unfortunately</span>, 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.Erikahttp://www.blogger.com/profile/01084667108487665211noreply@blogger.com0tag:blogger.com,1999:blog-7599290566773821648.post-58269542713910688132008-09-16T06:18:00.000-07:002008-09-16T07:03:20.345-07:00Answers, anger and what happened nextThe neurologist took a bunch of notes then ordered <span class="blsp-spelling-error" id="SPELLING_ERROR_0">MRIs</span> of her head and spine (for the <span class="blsp-spelling-error" id="SPELLING_ERROR_1">spina</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_2">bifida</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_3">occulta</span>). 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_4">spina</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_5">bifida</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_6">occulta</span>. The neurologist said that the damage was significant for that type of <span class="blsp-spelling-error" id="SPELLING_ERROR_7">spina</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_8">bifida</span>, 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_9">hypotonia</span> 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. <br /><br />Let me just stop here to say I was disappointed. During the years that she <span class="blsp-spelling-error" id="SPELLING_ERROR_10">recieved</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_11">negligable</span> 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_12">lightbulb</span> is out. That's how neurological stuff can be, only times a thousand. And that one little bit of <span class="blsp-spelling-error" id="SPELLING_ERROR_13">offness</span> can change everything. <br /><br />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 <span class="blsp-spelling-error" id="SPELLING_ERROR_14">genetecist</span> 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.<br /><br />There wasn't an attorney that would sue them. According to the law, I could make them pay as a <span class="blsp-spelling-error" id="SPELLING_ERROR_15">civillian</span> 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. <br /><br />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.<br /><br /> 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.Erikahttp://www.blogger.com/profile/01084667108487665211noreply@blogger.com0tag:blogger.com,1999:blog-7599290566773821648.post-69214788728786146952008-09-15T10:52:00.000-07:002008-09-15T11:15:48.376-07:00It wasn't in my headWhen 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.<br /><br />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.<br /><br />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.Erikahttp://www.blogger.com/profile/01084667108487665211noreply@blogger.com0tag:blogger.com,1999:blog-7599290566773821648.post-20491613623949150122008-09-14T04:46:00.000-07:002008-09-14T05:20:39.524-07:00She 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.<br /><br />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?<br /><br />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. <br /><br />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!Erikahttp://www.blogger.com/profile/01084667108487665211noreply@blogger.com0tag:blogger.com,1999:blog-7599290566773821648.post-39709443388993280852008-09-13T06:43:00.000-07:002008-09-13T07:25:34.187-07:00When 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. <br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.Erikahttp://www.blogger.com/profile/01084667108487665211noreply@blogger.com0