tag:blogger.com,1999:blog-11278888777337128332024-03-19T05:17:46.405-05:00The Cleft of the MatterSometimes an introspection. Sometimes a vent. Maybe entertaining. Maybe thought provoking. Always my life.Mommy Machttp://www.blogger.com/profile/01412419080792133545noreply@blogger.comBlogger255125tag:blogger.com,1999:blog-1127888877733712833.post-16218040230225775822015-08-02T07:41:00.000-05:002015-08-02T07:41:32.184-05:00Change is in the airSo, I have failed miserably at keeping active on this blog. One of the main reasons is that I rarely use my laptop these days, and the mobile user interface I find a little less than user friendly. But I'm trying! <br />
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Lots of updates for you all - many of you probably already know this but I'm writing the updates anyway...<br />
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Miss Sunshine had her yearly cleft clinic at Shriner's, and it went beautifully. At this point, her cleft repair is perfect, her hearing is about the same and there is not much to do until it comes time for her to start orthodontics. Since we don't have any loose teeth yet and likely won't for another six months to a year based on her panoramic dental xrays, it's going to be a while for that. In fact, they said they really only need to see her every two years until that time instead of yearly. We will be continuing to go yearly, however, because she is now also being followed by their orthopedics team. I'm not sure if I have mentioned it on here before, but Miss Sunshine is a pronounced toe walker. It's really gotten considerably worse in the past year, so we were happy to have the Shriner's team take a look at her. We did get some unexpected diagnoses during her evaluation with them, however. For one, they diagnosed her with Sensory Processing Disorder. Basically, her body is constantly seeking physical stimulation, and they believe that the toe walking is a partial response to that sensory seeking. Another issue they found is that her core muscles are very weak, while her back muscles are very strong. This is also contributing to the toe walking because it is compromising her posture and balance. Third is basically a matter of the chicken or the egg. Miss Sunshine's Achilles' tendons are extremely tight, causing compromised range of motion in her ankles. Most people can achieve a greater than 90 degree flexion in their ankles. Miss Sunshine doesn't even come close. They didn't give us exact numbers, but for sure she can't get to 90 degrees at all. What they couldn't tell us is if the tightness in her ankles came first, causing the other issues, or if the tightness is a result of the other issues. We lean toward believe that the tightness came first, mainly because Daddy Mac also has tight Achilles tendons and restricted range of motion, although not to the degree that Miss Sunshine does. So, what does all this mean in the long run? Well, for now it means physical and occupational therapy to address the tightness and underlying causes. She also wears splints at night to keep her ankles flexed and try to help with the tightness. We now have an orthopedic team here locally as well as the Shriner's team, and our local team has agreed 100% with Shriner's assessment of everything. If PT and OT have not made significant progress in the next two months, then we move on to what is called serial casting. Basically, they will cast her ankles at progressive angles weekly or bi-weekly until they are able to achieve a normal range of flexion in her ankles, and that will likely be followed by orthotic braces. Due to the degree of progression in her toe walking, we are all expecting this to happen, although we will be pleasantly surprised if the PT works. The last, and most extreme option, is tendon lengthening surgery. Everyone is hoping to avoid that! Our orthopedist here feels that we should be able to achieve what we want without surgery, so we are naturally clinging to that hope. It has been a lot to take in, but we are hopeful that we will see improvement soon. <br />
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I also have updates on myself. I know I wrote a post last fall talking about our miscarriage. Well, we found out in early February that we have another baby on the way! Last week we got some scary news. I have developed pre-eclampsia. This is a dangerous condition affecting the mother and the only true cure is to deliver the baby. I also had this condition with Monster Boy, and it was so severe that he was delivered as soon as they discovered it at 36 weeks. This time it started much earlier. Right now, I am stable. My blood pressure is elevated and my kidneys are spilling protein, but all of my other labwork is fine. So, I have been put on blood pressure medication and modified bedrest, taken off of work and am being monitored weekly, because I am so early in my pregnancy still (30 weeks tomorrow!). The hope is that I will remain stable until 37 weeks, when we have scheduled a C-section for delivery. Our most immediate goal is to get me to 34 weeks. It has been a little bit scare and overwhelming, but I have faith in our medical team, and they are being very proactive in taking care of me because of my history, so we are hopeful that we will make it to 37 weeks before we meet our new baby girl. (She still does not have a name!). I rarely ask for prayers or good thoughts, but if you could keep us in mind that we will safely make it to delivery, both me and the baby, it would be greatly appreciated. Mommy Machttp://www.blogger.com/profile/01412419080792133545noreply@blogger.com0tag:blogger.com,1999:blog-1127888877733712833.post-8241040442985693132015-01-27T19:09:00.000-06:002015-01-27T19:09:29.848-06:00Perpetually lateBeing late is one of my biggest pet peeves. And yet, I don't think I ever manage to be on time for anything except flights and doctors appointments. I'm so frequently late that I'm overly worried about missing a flight or an appointment so I'm always terribly early and stuck dealing with annoyed kids as a result. <br />
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All this is a lead up to say that I'm late, again. I missed the five year anniversary of Miss Sunshine's cleft repair. It seems so crazy to me that it has already been five years - but it has. Miss Sunshine is doing remarkably well these days. We have a few minor speech issues, that may be cleft related, but are more likely age typical mispronunciations and errors. S's are still a bit unclear, and R's still come out as W's more often than not, but overall she has no need for speech therapy. I have to schedule a follow up hearing test for her after our Shriner's visit, where she tested significant loss in her right ear. They said it could be due to the plane ride, though, so we are crossing our fingers that is the case. She is still toe walking 95% of the time, and even though we try to get her to do stretches and walk heels to the floor, she is losing flexibility almost daily it seems like. We do meet with the orthopedics team at Shriner's at our next cleft team visit (I can't sing the praises of this organization enough, seriously. The things they have done for our family alone, much less the thousands of others they help daily...), and I'm anxious to see what they have to say. I'm praying it's something that will be correctable with therapy or braces or something along those lines, and not require surgery. Only time will tell, I suppose. <br />
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<tr><td class="tr-caption" style="text-align: center;">Waiting in the airport before our last Shriner's trip</td></tr>
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We went to the eye doctor this week. Miss Sunshine has perfect vision. Monster Boy really, REALLY tried to fail his vision test because he wants glasses! He did come up slightly far sighted, so he now has reading glasses. He is beyond excited about them and really tries to find any excuse to wear them as much as possible. It's rather amusing. He looks absolutely adorable in them, though.<br />
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<tr><td class="tr-caption" style="text-align: center;">So handsome in his new glasses - that he picked out all on his own</td></tr>
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I finally graduated! I have taken the NCLEX (my licensing exam), and passed. I am officially an RN! I have a license number, and a JOB. I am so excited about the job! I have officially accepted a position in the labor and delivery/postpartum unit at one of our local hospitals. It is a very exciting opportunity and I am thrilled - it's my dream job and I couldn't be more excited to start. I feel very hopeful that the past six years of struggles and worries are moving behind us, and the future is looking very bright for us all. I am hoping that now that school is done, I may find more time to update and bring more cleft awareness here. I make no promises on that front, mind you. But I can dream! Mommy Machttp://www.blogger.com/profile/01412419080792133545noreply@blogger.com0tag:blogger.com,1999:blog-1127888877733712833.post-67923671337305694932014-12-16T21:37:00.002-06:002014-12-16T21:37:52.774-06:00Keep moving... The last three weeks have been insanely busy around our household. <br />
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I finished up my final hours of my capstone experience, cramming half of the hours I had to complete into less than ten days. Phew - it was crazy, but I got it done! Last Friday was my pinning ceremony, and Sunday was graduation day. I have officially completed my BSN! Now on to the NCLEX, the licensing exam I have to take to get my nursing license and start working as a registered nurse. <br />
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I mentioned in my last post that I received a job offer. I will be working on a Labor and Deliver/Postpartum unit at one of our local hospitals, pending my passing my licensing exam. I am very excited about this - it's what I've wanted to do since I went back to school. I'm hoping to have everything completed and ready to go in early January so that as soon as I receive my license I can get moving. <br />
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The kids had their Christmas concert yesterday, and it was adorable as always. Miss Sunshine has been terribly worried about this concert and was continually talking about what if she messed up. Well, I kind of expected her to have a major case of stage fright and freeze up based on that. I couldn't have been more wrong! She got out there and gave quite the performance. Monster Boy was a ham, as usual, and rocked his duet again. He has had a solo or duet in every concert he has been in since the second grade (when they start auditioning for the parts). He loves performing and has a beautiful voice (I realize I may be biased, but he really does sing well). Hopefully now that things will be slowing down since I am finished with school, we will be able to get him in to music lessons. I can't wait to see where he goes with it. <br />
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Daddy Mac and I are slowly working on healing. I still find myself tearing up and crying at random times. It's been emotionally very difficult. I'm nearly fully recovered physically (hopefully I gave my last donation of blood to the vampires, er, lab technicians, yesterday), but emotionally is of course another story, as I expected. One of the few things I had ordered in preparation for a new baby arrived last week, and that was a hard day for sure. I know it will get better with time, but little reminders here and there can make it hard to get through the day without crying. I just have to keep working on my feelings and eventually it will get better. <br />
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For now, it's time to look to the future and all the changes it will bring to our family. Mommy Machttp://www.blogger.com/profile/01412419080792133545noreply@blogger.com0tag:blogger.com,1999:blog-1127888877733712833.post-85039223329116962572014-11-30T18:43:00.000-06:002014-11-30T18:43:06.273-06:00An Elephant in the roomThere are things nobody talks about. I don't know if it's the stigma associated, if people feel it's some kind of bad karma, or if it's simply one of those subjects that is considered taboo. <br />
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Today, I decided I'm going to talk about it. Because I'm living it right now, and it hurts and I feel like this isn't something I should feel the need to hide. <br />
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Daddy Mac and I decided a few months ago that we would like a third child. We made the decision that we were just going to take prevention out of the equation and see what happened - not trying to get pregnant, but not trying NOT to get pregnant either. So we were happy and bit scared when we discovered that the first month we did this resulted in a pregnancy. <br />
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The first few weeks went as normal - I felt sick to my stomach all the time, and all those other fun pregnancy symptoms. And then, the not so normal stuff started happening. I started spotting. It was light, and my lab levels that the doctor ran came back all normal. So, we were told it was likely normal and to keep going about things as usual. And then I spotted again. I spent a weekend on bedrest, putting me behind on my Capstone experience for graduation, and went back in for more lab work. And we found out that it was not normal. <br />
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I miscarried this past week. It was the most physically and emotionally painful experience I've ever had. I don't know why, but since I was only 7 weeks pregnant I just didn't expect that much physical pain. I wound up missing another Capstone day because I was literally in so much pain that I was shaking and couldn't stand up. Daddy Mac had to stand pretty much helplessly by as we watched our hopes and dreams shatter. <br />
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I don't know what the future holds for our family, and I can't pretend to understand why we would lose this baby. I know that in some way, there is a reason for everything. At least, that is what I keep telling myself. To be honest, that doesn't really help. I still ache, I still cry, I still wonder. I know eventually the pain will lessen, but that it will never go away. That I will always wonder what if. That if we decide to try again, I will spend the beginning of my pregnancy, if not my entire pregnancy, in endless worry. That there is a risk this could happen again, and that I may not be able to ever have another baby. I think that probably scares me the most. <br />
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For now, I'm focusing on one day at a time. I graduate in two weeks. I have to complete my Capstone experience in those two weeks, and it's going to take pretty much every day I have left because of the days I missed while fruitlessly hoping that I would get to keep this baby, and again while I was dealing with the physical pain of losing this baby. Then I graduate. Then comes the holidays, then taking my licensing exam and hopefully passing the first time so I can start at the job whose offer I accepted (more on that later, once I can officially say I have the job!). It's going to be a busy few weeks, especially when you throw in kids birthdays and family holiday time and work and all that fun stuff. And maybe sometime soon we will feel ready to try again. Or maybe we won't. One day at a time.<br />
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<tr><td class="tr-caption" style="text-align: center;"><a href="http://www.sayinggoodbye.org/">http://www.sayinggoodbye.org/</a></td></tr>
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Mommy Machttp://www.blogger.com/profile/01412419080792133545noreply@blogger.com0tag:blogger.com,1999:blog-1127888877733712833.post-88049563365567814632014-09-13T15:25:00.000-05:002014-09-13T15:25:00.428-05:00Let it fall...Life has been crazy the last few weeks. Oh, who am I kidding? It's been crazy for years now. <br />
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Like so many others, I am a stress eater. And I think it's safe to say that I have been through a lot of stress the past few years. As a result, I had a number pop up on my scale a few weeks ago that I never thought I would see. It was a bit of a wake up call for me. How can I be a good mom, a good wife and a good nurse if I don't feel good about myself? I can't. After years of blaming every situation in my life, of making excuses, of making plans and failing to follow through, I decided to take a leap. I have watched several friends start a new diet program with astounding results. After months of sitting on the fence, I bit the bullet and started it up myself this week.<br />
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Yesterday was the first day of my first eight day challenge. It's a very restrictive diet for the first eight days, and I won't pretend it's been easy these first two. I really wanted to join in on the sub sandwich fest the rest of my family enjoyed this afternoon, and Daddy Mac is planning a slow cooked homemade chili for dinner tomorrow that I won't get to partake in. But if I can get the results my friends have gotten, this sacrifice will be worth it. I'm ready to get back to me - the healthy, happy me. I promise to post periodic updates as a way to keep myself on track, but hopefully also as proof that this really does work. And, if you are interested in knowing more about what I am doing to lose weight and get into shape - leave me a comment with your email address. This is a no pressure kind of deal for me, so I'm not running around telling everyone "You should do this!". But if it works for me, I'm happy to share it with everyone else, too!Mommy Machttp://www.blogger.com/profile/01412419080792133545noreply@blogger.com0tag:blogger.com,1999:blog-1127888877733712833.post-75303612427011223912014-07-18T23:55:00.001-05:002014-07-18T23:55:12.940-05:00ReadingSo, a few months ago I got an app by Hooked on Phonics for Miss Sunshine. I can't say enough fantastic things about this app. Miss Sunshine loves getting to "play" on the tablet, and I love that she's learning while playing. <br />
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She has begun reading short books within the app on her own, and is learning the principles of sounding out and joining sounds to read words. One thing I have noticed, though, is that she struggles with letter sounds that are similar on some of the activities where she has to listen for a sound or word. It concerns me, because I don't know if it is her not giving her full attention, or if it is a result of her hearing loss. Or even if it is a sign that the hearing loss has progressed more. I tend to torture myself with worrying about it, which is not good for anyone. <br />
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I wish I knew what the answers were, but this is just another uncertain part of our journey, I suppose. It is hard, as a parent, to not have all the answers. It is hard for me, the control freak, especially. Just one more thing I can't automatically fix for her. I hate the fear and uncertainty that surrounds every visit to the ENT, every time she complains of an ear ache, every time she answers "What." When I say something to her. That insidious little voice in the back of my head whispering that maybe this time it will be too far gone, that this time will be the time we have to order that hearing aid. <br />
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I have to make sure to tell her new teacher that she needs to position Miss Sunshine so that her left side faces the teacher, so she can hear her more clearly. To let her know that if Miss Sunshine is not looking at her and focused on the conversation, she may not respond. Not beaches she is ignoring, but because she honestly cannot hear her. I hate it, but it's a conversation that must be had.<br />
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The hearing aspect is something most people never think about when it comes to cleft. So often I have heard "You know, our child had lots of ear infections and we opted not to do tubes. They hear just fine." It's different for a child with cleft. It's not about infections. It's about persistent fluid in the ears because the palate doesn't function properly. It's about scarring, and loss of movement, and the possibility of permanent hearing loss. Yes, there can be infections. And these things are all risks of infections as well, but for Miss Sunshine it's different. It's not about infections for her. It's just another round of surgeries she has to face in the list of surgeries she has. One more thing about her cleft that We have to compensate for, deal with the best we can. Mommy Machttp://www.blogger.com/profile/01412419080792133545noreply@blogger.com0tag:blogger.com,1999:blog-1127888877733712833.post-73320177980378509802014-07-14T00:06:00.000-05:002014-07-14T00:06:24.921-05:00Princess feverMiss Sunshine is obsessed with princesses. If she's not in her school uniform, she's in a princess dress. In fact, she was reduced to tears earlier today when Daddy Mac informed her she needed to take her princess dress off so he could wash it. <br />
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I have to be honest - the whole princess thing drives me CRAZY. I don't want my daughter growing up thinking that the way someone looks is more important that what is on the inside. I don't want her thinking she needs a man to solve her problems. I want her to love herself for who she is, to be strong and independent and ready to face the world. I worry that this obsession with princesses and all things pretty is setting up a level of abnormal expectation in her eyes. At the same time, it makes her so incredibly happy, and she is so incredibly confident in herself, that I just can't bring myself to take that away. Because isn't that what we all want, in reality? A happy child who loves themselves? <br />
And the truth is - she is beautiful. <br />
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<br />Mommy Machttp://www.blogger.com/profile/01412419080792133545noreply@blogger.com0tag:blogger.com,1999:blog-1127888877733712833.post-44567245549726698582014-07-14T00:05:00.001-05:002014-07-14T00:05:51.876-05:00Surgery number 6 (or is it 7? I've lost track...)Wow, it's been a terribly long time since I've been on here, hasn't it? I suppose that comes with the territory of working, going to nursing school and raising two kids. <br />
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So, updates. It's summer break here. The kids are crazy, and I think we are all about ready for school to start back up. We went to Disney World in May, and it was AMAZING! Seriously, it was the best experience we could have hoped for. The kids are already talking about when we can go back. <br />
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Miss Sunshine had another surgery after we came back. This time, she had the impacted tube removed, and the ENT did a patch on her eardrum. Because her last several tests have showed no fluid in her left ear (where the eardrum is intact), the ENT felt it was time to repair the right ear. Surgery went well although recovery was a bit nerve wracking. She did not want to wake up, and then didn't want to drink anything post op. And they wouldn't let us leave until she had something to eat or drink and kept it down. She finally sucked on enough of a Popsicle for us to go home. Then it was on to the daunting task of keeping a five year old from doing any gymnastics type activity, and getting no water in the ear of a child who has hair down to their butt. Not stressful at all. We had our initial post operative follow up three weeks after surgery - so far so good! Her eardrum even had some movement, which the ENT said was unexpected. Her hearing is still down, but that is normal with this surgery. We go back at the beginning of August for a hearing test to see where she is at. This surgery was necessary, so we had little choice in regards to doing it, but it does carry the risk of hearing loss. And since it was on the ear that already has hearing loss, that was a bit scary. In addition, prior to the surgery, she was borderline for needing a hearing aid in that ear, so if she does have hearing loss as a result we will be dealing with that as well. Obviously, Mommy is a bit of a mess with this next appointment looming over us. Happy thoughts would be great about now.<br />
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Monster Boy has struggled a lot this year. We began having major issues with his behavior at school back in October. It got very bad very fast, and we were at our wits end. He was finally diagnosed ADHD in December, and after much reluctance, we started medication in January. I believe medication has a purpose, and I am not against using medications when necessary. That said, I do try to avoid using medication unless it is 100% needed. I don't medicate for low fevers, coughs, etc. so putting him on a daily controlled substance he will likely need at least through school, if not life long, was intimidating to me. It was a difficult decision, but it was absolutely the right thing to do for our child. After starting the meds, it was like I had my son back. I am not naive. I realize my children can be difficult, handfuls. And downright crazy at times. But his behavior was so far beyond that, that he really wasn't the kid I knew anymore. Since starting the meds, he brought his grade in behavior from an F to an A! I couldn't be more proud of the strides he has made, and I look forward to the new school year rather than dreading it.<br />
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Things have been difficult for us as a family the first half of this year, and the road ahead is sure to have more twists and turns as we go along. But I'm beginning to see a nice, straight, clear stretch of highway in the distance, and I know we can make it to the easy point of our journey if we just keep on moving forward. Mommy Machttp://www.blogger.com/profile/01412419080792133545noreply@blogger.com0tag:blogger.com,1999:blog-1127888877733712833.post-36033951472084618222014-01-26T10:55:00.000-06:002014-01-26T10:55:16.201-06:00Five yearsMiss Sunshine turns five years old next week. I can't believe she is FIVE already. This also means that we just passed the four year mark on her palate repair surgery. Four years since the longest, scariest day of my life. <br />
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I know that we are incredibly blessed in so many ways. For one, we had the amazing fortune to be referred to Shriner's Hospitals for this surgery. Two, we live in a country where healthcare is (in general) available, so she had the opportunity for the surgery even if Shriner's hadn't taken her on as a patient. Three, she is an amazingly resilient child who came through surgery with flying colors. Four, her first surgical repair was a success and she has not needed subsequent surgeries. Five, she is a healthy child, so we did not face other issues post-repair. The list goes on and on and on. <br />
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I say all this, not to brag, but to point out all the potentials for problems that could have happened along the way. I have friends in the cleft community whose children are on palate repair five or six. There are multiple reasons repairs can fail, and sometimes (much like the occurrence of cleft itself) it just happens, and they don't know why. There can be other health issues, such as autism, sensory disorders, learning disorders, and so on. <br />
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This is not to say we have not faced our share of problems. Had Shriner's not accepted Miss Sunshine, for example, our insurance did not cover a cleft team. We would have had to contact each needed specialist individually, and had multiple out of pocket costs for such visits. Our bill would have been in the tens of thousands by the time all was said and done, between copays, deductibles and out of pocket maxes. Miss Sunshine STILL struggles with her ears (in fact, we are headed back to the ENT soon), and does have hearing loss in one ear, which has progressed with each visit to the ENT. While we are still hopeful that it may be related to that impact tube and not permanent, there is always the likely possibility that it is permanent, and that it may continue to progress. Miss Sunshine spent three years in speech therapy. There is still the possibility that she may require more therapy, as she does still have some negative speech habits and difficulties with pronouncing certain letters and sounds (for example, she loses a lot of air when saying the SH sound - a common problem in cleft children. It does not make her speech unrecognizable at this point, and since she really doesn't have vasopharangeal insufficiency in other speech patterns, not something that would need to be surgically corrected at this time). She does have some texture issues, which I believe to be residual from having baby food go up her nose. She will not eat anything that resembles baby food except apple sauce and yogurt. Mashed potatoes, or anything soft or pureed, will not pass the child's lips without a major fight. She is a terribly picky eater, and we have a hard time getting her to try new foods. She is still underweight for her age (though no longer failure to thrive!), and will likely always be that way - a residual of her struggle to gain weight in the first year of life due to her cleft. <br />
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But as I look back over the last five years, over the struggles and the successes, all I can do is be thankful. Thankful for the experiences we have had that have made us stronger as a family. Thankful for the opportunity to get the word out about cleft, about how it affects us in the real world. Thankful that people want to hear and listen. Thankful for the amazing support we have found within the cleft community. Thankful for our beautiful, amazing, perfect daughter. Mommy Machttp://www.blogger.com/profile/01412419080792133545noreply@blogger.com0tag:blogger.com,1999:blog-1127888877733712833.post-2997072337870899942013-11-22T11:42:00.000-06:002013-11-22T11:49:14.905-06:00An open letter to The LeagueTo whom it may concern, <br />
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I am sure that you have been bombarded with outraged emails, comments, and contacts in the last day. I suppose you can add this one to your list. <br />
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I am the parent of a cleft-affected child. I do not watch your show. My husband, however, does. I understand that the basis for your show is crass humor, with crude comments highlighting poor behavior. Regardless of the basis for your show, there is a line between crass and flat out wrong. I have heard about your comment regarding cleft children. I understand you called them ugly. Let me assure you, ugliness lies not with outward appearance. I can see ugly, and it is not my child. <br />
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Were you aware that cleft occurs in roughly 1 in every 700 births? That it is one of the most common birth defects in the US? I did the math for you - congratulations, you managed to insult roughly 453,012 people with your comment yesterday. That number includes only the number of people living in the US with cleft. It does not include their family members, friends, and others who may have found your comment offensive. <br />
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I think sometimes we forget that there are real people out there living with disfiguring conditions every day. I'd like to educate you a little bit about cleft. Children with cleft face multiple surgeries in their lifetime, beginning when they are only a few months old and continuing through adulthood. Each of these surgeries are extremely painful and require weeks to months of recovery time. While cleft can sometimes be linked genetically, whether through a syndrome (and there are numerous syndromes that can cause cleft) or through family history, quite often there is no known cause for cleft. This is the case with our daughter. There is no reason. It just is. She can't help it, I can't help it, her dad couldn't help it. This is not some thing that she made a decision to have. YOU, however, made a decision to ridicule her for it. I fail to see where the humor lies when an adult (in a script or otherwise) makes derogatory comments about an innocent child or children. I have spent the past nine years teaching my children that words hurt, and that making fun of others, especially their appearance, is never okay. Your show just told all of it's viewers that it is okay to make fun of other's appearances. I hope that makes you proud.<br />
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Here is a list of famous people who are cleft affected for you: Cheech Marin, Tom Brokaw, Jesse Jackson, Mark Hamill, Carmit Bachar (of the Pussycat Dolls), Stacy Keach, Annie Lennox, and the one you might recognize the most, Peyton Manning. Are these people ugly? <br />
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Shame on the writers who wrote the line, the actor who said the line, the director who filmed the line, the producers who backed the line, and FX for airing the line. <br />
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You may never read this letter - and that is your decision. However, rest assured that the thousands of people I have contact with through social media, public blogging, and news stations I am sending this letter to, will. I hope you never have to face the possibility of a loved one with a defect. But if you do, I hope you remember this moment. Maybe then you may feel some remorse. <br />
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Sincerely, <br />
an offended parent. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2S2WesjRQ_gQJ9tfxtAxq2OxLDUWFOTAYceuH4MytKK7swdH3OglBU9QlzWEoj43Zpq6LlHS5q80MtbK-2nPZS9CT0Fqab1GXgW3OFp6rfvitaesxdX_dfuS4e3uqUMxlGrwB12xuXMyR/s1600/IMG_1269.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2S2WesjRQ_gQJ9tfxtAxq2OxLDUWFOTAYceuH4MytKK7swdH3OglBU9QlzWEoj43Zpq6LlHS5q80MtbK-2nPZS9CT0Fqab1GXgW3OFp6rfvitaesxdX_dfuS4e3uqUMxlGrwB12xuXMyR/s320/IMG_1269.JPG" width="246" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My beautiful, cleft-affected daughter. </td></tr>
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<br />Mommy Machttp://www.blogger.com/profile/01412419080792133545noreply@blogger.com7tag:blogger.com,1999:blog-1127888877733712833.post-76588082851916995192013-11-05T21:11:00.000-06:002013-11-05T21:11:53.418-06:00Catch upI started off the summer with the best of intentions about keeping up on here, but as you can tell, I failed miserably at that! <br />
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I've started a new job (in my new career field) and between that and school, I meeting myself coming and going. I just keep telling myself it will be worth it in the end. <br />
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So, catch up. <br />
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Monster Boy is nearly nine now. Time truly flies. He is amazingly smart, and astounds us on a regular basis with what he can do. We found out at parent teacher conferences that he is testing at a fifth grade level in math - without any lessons on the material he tested on. The kid figured out basic algebra ON HIS OWN! He is definitely too smart for his own good. Unfortunately, my insane schedule is starting to take it's toll as well, and he is struggling behavior wise in school right now. I think there is also some teasing and such going on at school (he is the shortest kid in his class, for one thing). I wish I knew a good way to address it. He complains about it a lot, and we've spoken with the teacher regarding it, but she either doesn't see it happening or isn't taking it the same way he is when it does, because she doesn't seem to think it's a problem. His acting out in the classroom is rapidly becoming a major issue, however. We are racking our brains trying to come up with ideas to deal with that. <br />
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Miss Sunshine is doing well. She love, love, loves preschool. She is so excited to go every day. Her teacher says she is doing great, and learning just as quickly as Monster Boy seemed to do. We took her to the ENT last month, and it was a mix of good and bad news there. I dread these visits - her ears and hearing are my biggest worry right now. There is always that looming specter of more surgery hiding in the background, but it's only a possibility, not a given. But her ears - this is an ongoing concern. And hearing loss is often not correctable. So, the good news first. That ear tube that was already out and in the ear canal finally came out of her ear. And that eardrum healed on it's own (this is always a concern when you have ear tubes for an extended period of time) and there is NO fluid in that ear! Hooray! This means her palate is functioning, and keeping the fluid out of her Eustachian tubes. And that the tube doesn't need to be replaced. Now, for the bad news. The tube in the other ear is impacted in her ear drum. It is completely encased in wax, which is pressing against her ear drum and likely causing the itching she frequently complains about. The ENT really wants the tube out, but he's giving it six more months in the hopes that it will come out on it's own. If it comes out on it's own, there is a much better chance that her eardrum will heal on it's own as well. The ENT thinks it is likely she is going to need reconstructive surgery on that ear, though. Some type of patch, probably, for her ear drum. This is not optimal because it can cause further hearing loss. But even worse than that - the mild hearing loss she was already diagnosed with in that ear has progressed. It could be due to the wax around her tube causing pressure, it could be due to more scar tissue inside the ear, it could be a lot of things. On the one hand, if she has to have surgery to get this tube out, they can go in and potentially clear out some of that scar tissue, perhaps restoring some of her hearing, but at the same time risking not being able to save it. On the other hand, if the tube comes out on it's own and the eardrum heals, this hearing loss will likely be permanent. This was not news I was wanting to hear. But, it is what it is, and she can still hear, so we just deal with needing to use a louder voice when talking to her. I have also noticed that she is developing some negative speech habits, which I have to wonder if it's related to the hearing loss. We will likely have her reevaluated during her Kindergarten screening to see if she needs to resume speech therapy. <br />
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So, that was a long update. I've been kind of avoiding it, but now it's done. Mommy Machttp://www.blogger.com/profile/01412419080792133545noreply@blogger.com1tag:blogger.com,1999:blog-1127888877733712833.post-27889018454854180032013-07-05T23:00:00.001-05:002013-07-05T23:00:31.793-05:00It's July. Normally in July I'd be complaining about how ridiculously hot it is out. <br />
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Only, it's not right now. It has been beautiful here. <br />
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This year, I'm focusing on Cleft Awareness. <br />
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Did you know that cleft is one of the most common birth defects in the US? It occurs in roughly 1 in every 600 births. They have no idea what causes cleft. It could be environmental, it could be genetic. They just don't know. <br />
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Cleft occurs when, during the formation of the facial structures, the lip, palate or other facial structures do not "meet" to fuse together. <br />
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Miss Sunshine's cleft is commonly associated with a syndrome called Pierre-Robin's. Miss Sunshine does not have Pierre-Robin. We have no family history of cleft. (We have family history of a lot of other medical issues. But not cleft). I did not take any medications commonly thought to cause cleft during pregnancy. I took prenatal vitamins, did not consume any "forbidden" foods, was not exposed to radiation, or any other "toxins" during my pregnancy. We really do not know why she has a cleft. She just does. <br />
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You learn a lot when you have a child with a birth defect. (I'm not going to get on my soapbox right now. Maybe later). Things you never had any concept of before that happens. I had no idea how common cleft was. I had no idea there were different kinds of cleft. In fact, I remember when we were in the delivery room and the nurse announced she had a cleft palate. I had a C-section, so I was pretty much tied to a table. I told Daddy Mac to go look at her and see what was wrong. He came back to my said and told me "I don't see anything different about her. I don't know what the nurse is talking about. Her lips are fine." It wasn't until we were in the recovery room, and I was holding her that I realized what the nurse meant. It wasn't until she cried for the first time that I saw something was different than with Monster Boy. <br />
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But she was still beautiful and perfect to me. Mommy Machttp://www.blogger.com/profile/01412419080792133545noreply@blogger.com1tag:blogger.com,1999:blog-1127888877733712833.post-31482867307066509162013-07-02T18:43:00.000-05:002013-07-02T18:43:19.128-05:00Crazy Summer DaysIt's been a beautiful summer around these parts. I had planned to spend a little time updating, but we've been running non-stop since school let out, and it just hasn't happened. <br />
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However - July is Cleft Awareness month, so I'm going to attempt to write at least one post a week (hoping to maybe get something short up each day) about cleft and our journey. <br />
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For my first post - I'd like to talk a little bit about Miss Sunshine's cleft. She was born with an incomplete cleft of the soft palate and bifid uvula. Her type of cleft is not visible unless she opens her mouth wide. It does have a great impact on her ability to eat, however. Because the roof of her mouth was completely open into her nasal passages, she could not create suction in her mouth. So she had to use a special type of bottle - in her case, a Haberman (also called a Medela Special Needs Nurser) - which didn't require as much suction. In fact, her bottle had an elongated nipple with a chamber that we actually squeezed to help her eat until she was big enough to have a little bit of suction and eat on her own. She also had many ear infections and persistent fluid in her ears because her Eustachian tubes were completely open. In fact, she failed four different hearing tests before her first set of tubes were placed, and does have minor hearing loss in one ear due to scarring. Her overall hearing still tests within normal range, but monitoring her ear tubes is an important part of her care, as she made need them for several more years. <br />
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Miss Sunshine has had a total of four surgeries - including five sets of ear tubes and her palate repair. When her palate repair was performed, the surgeon cut along her gumline on the inside of her palate, as well as along the cleft. He then pulled the loosened tissue together in the middle with sutures, and the rest of her mouth was packed but left open to heal on it's own. The muscles in the roof of her mouth also had to be repositioned during this surgery. In a normal palate, the muscles cross the roof of the mouth from side to side. Due to her cleft, Miss Sunshine's muscles actually ran front to back, with a gap in the middle where her cleft was. So all those muscles had to be cut, and turned and repositioned so that they ran across the roof of her mouth like they were supposed to. That is a necessary part of the procedure, as it allows for proper speech, and also helps to protect her Eustachian tubes, meaning eventually she will no longer need tubes in her ears. <br />
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Miss Sunshine spent three years in speech therapy, before being released. Prior to her palate repair she was not able to make any hard consonant sounds. She could make MMMM and NNNN sounds. So, her first word was Mama, because it was one of the few sounds she could successfully make without a repaired palate. She wasn't much of a babbler, and I think a lot of that had to do with her inability to form certain sounds. <br />
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That's the basics behind her cleft. There is much more detail, which I will be sure to make posts about as the month progresses, but that's the beginning of our story. <br />
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<tr><td class="tr-caption" style="text-align: center;"><em>Miss Sunshine's palate - before repair</em></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><em>What her special bottle looked like.</em> <br />
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<tr><td class="tr-caption" style="text-align: center;"><em>Her palate one week post op - kind of blurry but you can see where they opened the roof of her mouth to get the needed tissue for the closure of the cleft.</em></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><em>Miss Sunshine's palate three years post-op. Unless you know what you are looking for you can't even see the scarring.</em></td></tr>
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Mommy Machttp://www.blogger.com/profile/01412419080792133545noreply@blogger.com0tag:blogger.com,1999:blog-1127888877733712833.post-37896325364590302422013-04-09T20:22:00.001-05:002013-04-09T20:22:52.598-05:00Catch upSo, life has been crazy here. School is a lot of pressure this semester - but I am loving it (not the pressure, but everything I am learning). Monster Boy has been doing really well at school lately. Miss Sunshine is as spoiled as ever, and just graduated to a "real" bed. Daddy Mac is as busy as ever with work and school board meetings and Boy Scouts and life in general. <br />
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Both the kids want to play baseball this summer. This will be Monster Boy's third year, and Miss Sunshine's first. I was surprised she wanted to play, since she is the epitome of a girlie girl, but she was insistent that she wanted to do it. So we signed her up. This should be interesting. <br />
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Here are some recent pictures of the kids from a trip to the zoo over Spring Break, Easter, and one of our many crazy snowstorms this year! <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYLAe4WzA_HvDtn_J5x2WKJaFjy3_zxlMhyphenhyphenLqZku3y7j9PYVmZfvf9ApnH-ijXfpIelbiYdVvKw4543uB1AH6sC8bmXNfiI-gdfCKapk3io-sttFEU_yZ0TsEiRlwQiQ460Ls5AFodzvJn/s640/blogger-image--220911565.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYLAe4WzA_HvDtn_J5x2WKJaFjy3_zxlMhyphenhyphenLqZku3y7j9PYVmZfvf9ApnH-ijXfpIelbiYdVvKw4543uB1AH6sC8bmXNfiI-gdfCKapk3io-sttFEU_yZ0TsEiRlwQiQ460Ls5AFodzvJn/s640/blogger-image--220911565.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXC49hun3DHD3GAjiUJCxS4_EnJgB0a4RFLGdtOsp8dJ8q-M4IPhBRJ29jtdwR8hftKg_gi_eVnTZZn-RRTt6e6S_v019WIOF7Yu6G7_0HGadEh8hxHX2NIQpa53vqHHWPfPojtWXquERs/s640/blogger-image--1683804570.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXC49hun3DHD3GAjiUJCxS4_EnJgB0a4RFLGdtOsp8dJ8q-M4IPhBRJ29jtdwR8hftKg_gi_eVnTZZn-RRTt6e6S_v019WIOF7Yu6G7_0HGadEh8hxHX2NIQpa53vqHHWPfPojtWXquERs/s640/blogger-image--1683804570.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGH24dFF7qkGINPpGPGxGdOm-dnrQXSzSEyvOE0pV87nY_Ay10sBxSbz7USpOG_VZ2q6mBocaV34MJjxsFpxB3MiqFV9roihHfa-ISjUTDovcSsCaNWuHUnSe_i2SepwwZHYE2K06xzEoi/s640/blogger-image-190499139.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGH24dFF7qkGINPpGPGxGdOm-dnrQXSzSEyvOE0pV87nY_Ay10sBxSbz7USpOG_VZ2q6mBocaV34MJjxsFpxB3MiqFV9roihHfa-ISjUTDovcSsCaNWuHUnSe_i2SepwwZHYE2K06xzEoi/s640/blogger-image-190499139.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBGL-DOEpEkAKCoksF0TtjehQGkpMsicONiGDwL7uz5An3h0B_NRAUxz7rKf7tzXIXFm__veJHIbwf31z-M-_mxJqHD2wUxQOs8AnjdbeTZXv9FmknjpQ_-VkVYdDgWf29uAYSQtNp9pGC/s640/blogger-image-774350746.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBGL-DOEpEkAKCoksF0TtjehQGkpMsicONiGDwL7uz5An3h0B_NRAUxz7rKf7tzXIXFm__veJHIbwf31z-M-_mxJqHD2wUxQOs8AnjdbeTZXv9FmknjpQ_-VkVYdDgWf29uAYSQtNp9pGC/s640/blogger-image-774350746.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSoKZRHY91aXD80D1WExZ3uJyzlb9_yZ16nfo1dp2E-qipCUR3AAEkrymkuWvOZbDIpTS4YiKUXxHfHPJXCPe-fwhq4Ze5Xx7d_o1PiKVjDFsJVcxv1eIFHw2t2wd6xZwuswIj3QdWU560/s640/blogger-image--495616149.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSoKZRHY91aXD80D1WExZ3uJyzlb9_yZ16nfo1dp2E-qipCUR3AAEkrymkuWvOZbDIpTS4YiKUXxHfHPJXCPe-fwhq4Ze5Xx7d_o1PiKVjDFsJVcxv1eIFHw2t2wd6xZwuswIj3QdWU560/s640/blogger-image--495616149.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_SCYSSBWWlLPoYYTQzxuv9PhuqnK3jcSbJIyohzGW4gPN8438ut3xgyMfSOyIyHAlG-2zoXffn1jwrrQB6Fkj3VFjibLQq3tDWzZpFKIQLF-QtynaaSUt9eEyyRiAZhTzEH9n3OiLiue0/s640/blogger-image--677144443.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_SCYSSBWWlLPoYYTQzxuv9PhuqnK3jcSbJIyohzGW4gPN8438ut3xgyMfSOyIyHAlG-2zoXffn1jwrrQB6Fkj3VFjibLQq3tDWzZpFKIQLF-QtynaaSUt9eEyyRiAZhTzEH9n3OiLiue0/s640/blogger-image--677144443.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJBwvdua0wkhqGh0MvqRiACkLXm9hSgO1Jo6c3a0Y09cWuu8mqgQcwT3xNURbVLgsw7ztydUHdu1tBJDRABOtzk_kTj3gSp4xVAnZcwYG_OEUaF2xmLkAEivsnfS8gQA2SFDmdSAgDN25V/s640/blogger-image--1432454153.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJBwvdua0wkhqGh0MvqRiACkLXm9hSgO1Jo6c3a0Y09cWuu8mqgQcwT3xNURbVLgsw7ztydUHdu1tBJDRABOtzk_kTj3gSp4xVAnZcwYG_OEUaF2xmLkAEivsnfS8gQA2SFDmdSAgDN25V/s640/blogger-image--1432454153.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-Ad6qS6L4E9PMAhL_rWz4dmfYxxMbpKW-JuPfRBGFemzA1aSvmvyuv0v-gRggAjdTb05OZZY93YSm2jHYWSRVC_m4T2c3PP3PxEbXSbnIXFyemC3AIWxKgECJsv06NrWmtq4-Wh7M_G0j/s640/blogger-image--1995935511.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-Ad6qS6L4E9PMAhL_rWz4dmfYxxMbpKW-JuPfRBGFemzA1aSvmvyuv0v-gRggAjdTb05OZZY93YSm2jHYWSRVC_m4T2c3PP3PxEbXSbnIXFyemC3AIWxKgECJsv06NrWmtq4-Wh7M_G0j/s640/blogger-image--1995935511.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8YNWjTlz5TvVBMjJW2fnMkvETExlqaP_q5FSDYTGPctwO1sxLoKhFzWoAXT8ICAf_oinYGBmFBLw8WDTcZ9dINvLp2kEF87GCDctisJgEu_MVX7g4Fjz7d7BNjvj9menzcd__bauX2Zgt/s640/blogger-image-439334748.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8YNWjTlz5TvVBMjJW2fnMkvETExlqaP_q5FSDYTGPctwO1sxLoKhFzWoAXT8ICAf_oinYGBmFBLw8WDTcZ9dINvLp2kEF87GCDctisJgEu_MVX7g4Fjz7d7BNjvj9menzcd__bauX2Zgt/s640/blogger-image-439334748.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYJiumB2zfiRyae4EhSARTedOx2EXxkpm9uFrMsYm8sFD7OTJYcFxnfD5wuBwdzpPdr7yKWWpfaKTQK8B7A72pKj9eDfoQUDhu_xHTCO_UWZj2MEg2H3ImY_jeh0dk3Y9gJDgh7MPaL3ma/s640/blogger-image-675825705.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYJiumB2zfiRyae4EhSARTedOx2EXxkpm9uFrMsYm8sFD7OTJYcFxnfD5wuBwdzpPdr7yKWWpfaKTQK8B7A72pKj9eDfoQUDhu_xHTCO_UWZj2MEg2H3ImY_jeh0dk3Y9gJDgh7MPaL3ma/s640/blogger-image-675825705.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZB_WbCVDy1W-L7Rw13xpzvtzcL-c8wWY1EDwRVa1krXzfCDboEwuBr0ZpNQqGR1izLwAxUr3wedIzwaBPz5X1CzgNJgXzD1kLbyV43Stt8jcVJu1S_EbWp3C56Ajv5o3KCufj55JkyAqo/s640/blogger-image--592697685.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZB_WbCVDy1W-L7Rw13xpzvtzcL-c8wWY1EDwRVa1krXzfCDboEwuBr0ZpNQqGR1izLwAxUr3wedIzwaBPz5X1CzgNJgXzD1kLbyV43Stt8jcVJu1S_EbWp3C56Ajv5o3KCufj55JkyAqo/s640/blogger-image--592697685.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimc00S1_0dOPVBrtjb_GVUSPBWvwBqtAavFDX-AUBEwVLqkTQQGlB0G3_7CKiorjUm9dzGolFCTOuola5FV73xS5SBWzmgfRgCdYmxBjRwwPvoAU2vUirKdWwzHvZQY2UVsseZPVdbeRzW/s640/blogger-image-874851040.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimc00S1_0dOPVBrtjb_GVUSPBWvwBqtAavFDX-AUBEwVLqkTQQGlB0G3_7CKiorjUm9dzGolFCTOuola5FV73xS5SBWzmgfRgCdYmxBjRwwPvoAU2vUirKdWwzHvZQY2UVsseZPVdbeRzW/s640/blogger-image-874851040.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWtqqGmu0N7tdlQDuIJwjNmY5vWrYZN4mrZDlnA2QXeWwP-2i5RvRlS2bNBUdy55QEUfqIiGGas7uYhE7SP2cmeeG4nB-E-YrQ33XjY5Zq2s8iSGLC9Q6HiJr0PIyYNcV0S4TibsbQLyW-/s640/blogger-image-812016106.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWtqqGmu0N7tdlQDuIJwjNmY5vWrYZN4mrZDlnA2QXeWwP-2i5RvRlS2bNBUdy55QEUfqIiGGas7uYhE7SP2cmeeG4nB-E-YrQ33XjY5Zq2s8iSGLC9Q6HiJr0PIyYNcV0S4TibsbQLyW-/s640/blogger-image-812016106.jpg" /></a></div>Mommy Machttp://www.blogger.com/profile/01412419080792133545noreply@blogger.com0tag:blogger.com,1999:blog-1127888877733712833.post-9298557778001038242013-03-02T21:58:00.000-06:002013-03-02T21:58:07.131-06:00SlackingSo, the last two months have been something of a blur. We have been so busy around here that nothing much has gotten done - if that makes sense. <br />
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We did get a week long break between the end of last week and beginning of this week, thanks to two major snowfalls hitting our city. 14+ inches on the first round, and nearly 7 on the second. Craziness! So, the kids and I enjoyed some playtime outside, and nobody got anything done around the house during the six day weekend (eight for me, since I don't have classes on Wednesdays) that we had. It was well worth it, though, to have some good family time together. <br />
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And now, pictures! <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmd3JwuuQUY82nq3ZVfVtMc-ySVs4RnSquq1bo3V9raTeFPo87K128F3IQzkx0K0CwkhIU3TdtDTfceiI5T5XFosxLq0vW1zJs3ivliPVvSP1eQWOk57Dj_XiEXpAq6uRIu21A4sQ_WAEp/s1600/IMG_0507.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmd3JwuuQUY82nq3ZVfVtMc-ySVs4RnSquq1bo3V9raTeFPo87K128F3IQzkx0K0CwkhIU3TdtDTfceiI5T5XFosxLq0vW1zJs3ivliPVvSP1eQWOk57Dj_XiEXpAq6uRIu21A4sQ_WAEp/s320/IMG_0507.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Of course we had to build snowmen - it's not snow without snowmen! </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWBlgQO3hRYuEpygb3jzNOt9NYIwjBg36I7K1CZdWTDCT6cixlGqJixzlIuxH4b8zk-EXrneElON7CypqF3TW6cG9JPj5Rb-NGSwjwkxweL0rJrCsZF9AqVQjxf7Btij1lRSx840iIUM2u/s1600/IMG_0505.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWBlgQO3hRYuEpygb3jzNOt9NYIwjBg36I7K1CZdWTDCT6cixlGqJixzlIuxH4b8zk-EXrneElON7CypqF3TW6cG9JPj5Rb-NGSwjwkxweL0rJrCsZF9AqVQjxf7Btij1lRSx840iIUM2u/s320/IMG_0505.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Monster Boy (Yeah, he's definitely going to need braces...)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4VyjQoyOvRupWyUja2AFewxLGV8sf0pjijLATJnFq3ioHXTm9srJBSj5MEEOX58z-PX25CXEh_HCettB3rEGgxAg3DdXzKmQec71Ny_PboJnhFG4D8Kl4mnHNtL0gjcntJ9yWzelpBEZg/s1600/IMG_0506.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4VyjQoyOvRupWyUja2AFewxLGV8sf0pjijLATJnFq3ioHXTm9srJBSj5MEEOX58z-PX25CXEh_HCettB3rEGgxAg3DdXzKmQec71Ny_PboJnhFG4D8Kl4mnHNtL0gjcntJ9yWzelpBEZg/s320/IMG_0506.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Miss Sunshine! (We are officially in the wierd faces instead of smiling phase)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjODbIqCZMB55QB4-MDbAwdFDI0_E6Vt18icbbdQg-CBoXc-eBOkOtCN3IRy5aURfJZbNsPq3xv0ERlNzpRcIrub7NRh-prJU2ykvGClC4Yf8cfEN82Cu8IS5PdQGe2GlFMPyLz1xbrK3hP/s1600/IMG_0459.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjODbIqCZMB55QB4-MDbAwdFDI0_E6Vt18icbbdQg-CBoXc-eBOkOtCN3IRy5aURfJZbNsPq3xv0ERlNzpRcIrub7NRh-prJU2ykvGClC4Yf8cfEN82Cu8IS5PdQGe2GlFMPyLz1xbrK3hP/s320/IMG_0459.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Snowfall #1 - this is about 12 inches of snow - we got another 2 inches before the end of the day!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq-vW35mClM9PvEREdSXfa6GT2AdwmTBanp__OpW3558mS5IUBd6uVoc5_5GaTnQ0iwth4rirXcnHwgeYuRyeZVZUqh7-KVpv3oM7-vSIRfQdv3lUhFFlJm6Us3WkMBLVA6tWE4byfU9Z5/s1600/IMG_0460.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq-vW35mClM9PvEREdSXfa6GT2AdwmTBanp__OpW3558mS5IUBd6uVoc5_5GaTnQ0iwth4rirXcnHwgeYuRyeZVZUqh7-KVpv3oM7-vSIRfQdv3lUhFFlJm6Us3WkMBLVA6tWE4byfU9Z5/s320/IMG_0460.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Snowfall number one - somewhere between the single tree and the set of two trees is where our street is normally located.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXRWVhKs1OIhkWuBXIPm4S49ZRXDa-1olq9dm_MsFENKiPpdaSF0eVc5HmML8_Lo189bHvx6AtWeoj2uUb11Fke_h9TWrWRI90TI89Elbq9KsD8_PzxOrT-2NKORd16tP8Q_462N4R-Lp7/s1600/IMG_0475.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXRWVhKs1OIhkWuBXIPm4S49ZRXDa-1olq9dm_MsFENKiPpdaSF0eVc5HmML8_Lo189bHvx6AtWeoj2uUb11Fke_h9TWrWRI90TI89Elbq9KsD8_PzxOrT-2NKORd16tP8Q_462N4R-Lp7/s320/IMG_0475.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Snowfall #2 - it was a much wetter snow that stuck to EVERYTHING!<br />
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<span id="goog_808998712"></span><span id="goog_808998713"></span><br />Mommy Machttp://www.blogger.com/profile/01412419080792133545noreply@blogger.com0tag:blogger.com,1999:blog-1127888877733712833.post-70133793659165853632013-02-11T22:59:00.001-06:002013-02-11T22:59:09.810-06:00All earsSo, life has been insane. <br />
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Miss Sunshine is now FOUR. Man, how time flies. She's unbelievably cute (admittedly, I may be biased), way too smart for her own good, talking like a professional speaker, and generally driving us crazy. She has imagination in spades, is in to all things princess, ponies and pink (and purple!). I need to schedule her four year well child check, and her six month follow up with the ENT. I am not looking forward to that appointment, as one ear is totally occluded with wax (her tube isn't even visible) and the tube has come out of the other ear, but is still sitting in her ear canal, trapped there by wads of wax. She won't let me look at it for very long with the otoscope, and I'm not sure how to get that tube out of there. She will NOT appreciate the ENT taking care of it either. So, I'm not looking forward to that appointment. I am hopeful that the ENT will let us go for a few months without replacing the tubes, to see if she develops fluid again. I'm sure her ears would appreciate a break.<br />
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That's pretty much it for us right now. Things are just crazy busy with school and work and school and all that extra stuff that comes with school-aged kids and college! Mommy Machttp://www.blogger.com/profile/01412419080792133545noreply@blogger.com0tag:blogger.com,1999:blog-1127888877733712833.post-68247750481818481992013-01-15T19:12:00.003-06:002013-01-15T19:12:36.915-06:00Three years (and 1 day!)... Yesterday marked three years since Miss Sunshine's palate repair. I would have posted yesterday, but I'm sick with the plague (not really, but I am really sick) and just didn't feel up to it. Honestly, I don't feel up to it today either, so no promises on the quality of this post... <br />
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I think I touched on most of emotions regarding her surgery in my last post. So, I thought I'd do a little update, and then give you all some pictures of her journey to date.<br />
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Miss Sunshine has FINALLY made it on to the charts - she's roughly 25% in weight and 40% in height. It only took us three years to get here! She's been done with speech therapy for a year now - and while she does still substitute W for R, she is getting better about saying it correctly when it is modeled for her. We have no other developmental concerns - she's well above age in pretty much everything. Including imagination, it seems. She's got that in spades. I can hear her right now having a serious conversation with her stuffed Bullseye toy and our cat, Dante, in the living room. It's so great to watch her grow and flourish and turn in to this amazing child. Her personality is BIG (Diva doesn't even being to do her justice), she is FULL of drama of all kinds (good and bad), she loves to sing, her favorite colors are pink and purple, and she is the princess of the house, no questions asked.<br />
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The day she was born - you can sort of see her cleft here. </div>
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My first glance of her! </div>
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Her cleft palate</div>
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Another Palate shot</div>
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Waiting for surgery (Sorry, I can't seem to get this to go the right direction!) That is a Haberman (or Medela Special Needs) nipple in her hands. </div>
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Post-op, right after she woke up. You can see the thread through her tongue taped onto her cheek.</div>
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1 week post-op - the white patches are where they opened her palate around the gumline to meet it in the middle.</div>
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One year post op - she would NOT open her mouth.</div>
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Two years post-op (with her Monte's Bears for Clefts bear)</div>
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Three years post-op!</div>
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Three years post-op (she was surprisingly cooperative for these shots!)</div>
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Three years post-op (she was not so cooperative when I wanted to take a normal picture...)</div>
Mommy Machttp://www.blogger.com/profile/01412419080792133545noreply@blogger.com0tag:blogger.com,1999:blog-1127888877733712833.post-72155473507918199542013-01-09T23:23:00.001-06:002013-01-09T23:23:58.906-06:00I remember...Next Monday will mark three years since Miss Sunshine had her palate repair. Three years! I can't believe it's been that long already! <br />
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I'm not sure where the time has gone. I swear it seems like just yesterday we heard the words that would change our lives (and hers) forever. "She has a cleft palate. You are going to have a hard time feeding her." Those words are etched into my memory. As out of it as I was, having just undergone a cesarean section, I CLEARLY remember hearing the nurse say that. She has a cleft palate. She has a cleft palate. She has a cleft palate. Like it was ringing in my ears, over and over and over and over. I remember urging Daddy Mac to his feet. Go check on her. See what the nurse is talking about. What does she mean, cleft palate? I remember him going to see Miss Sunshine, coming back to me. "I don't see anything. I don't know what she's talking about. She looks fine." I remember them bringing her to me, searching her face, checking her over. It wasn't until we were settled in recovery (and I'd had an insulin shot - they pump you full of sugar water during surgery, and my gestational diabetes didn't appreciate that!) and I saw her cry for the first time that I actually saw her cleft. As soon as she opened her mouth to cry, there it was. Almost like it was staring at me. Daddy Mac wouldn't even have known what it was had I not pointed it out to him. <br />
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I remember trying, valiantly, to prove that nurse wrong about her feeding. I could breast feed her. The lactation consultants even said so. They brought me some outdated information regarding only cleft lip, which all said the potential was there. She latched perfectly. Her latch was amazing. I could feel her sucking. But she couldn't suck hard enough to stimulate a let down. I didn't want to give up. The nurses offered to bring me bottles for her. I refused. They told me I could nurse her. So I would. Finally, after two days, I conceded defeat. She lost too much weight, if I didn't get her to start gaining, they wouldn't let her go home. I pumped. Colostrum doesn't really pump well, and it was extremely painful. I gave her formula out of a cup. I was still hoping, praying that maybe once she got a bit stronger she could nurse. I cried. Ugly, sobbing, hysterical cries. I hid it from everyone. Daddy Mac stayed with us, so I cried into my pillow at night, while he slept. Nobody seemed to notice, except our family physician. But I lied, each time he asked how I was. "I'm fine. Things are great. We're ready to go home." He asked, over and over. I shot him down. I was afraid. Afraid to admit how upset I was. She was our miracle, our beautiful, precious, prayed for little girl. How could I admit that I felt like something was wrong with her? How could I admit that I felt like I had done something wrong to cause this? I kept lying. We went home, and I kept pumping. After two days, I admitted that she had to have a bottle. We tried everything we had in the house. Daddy Mac went out and bought other kinds. I enlarged holes, we dripped formula and breast milk into her mouth. She HAD to gain weight. My step mom went online and ordered us Mead Johnson nursers, and Habermans (now called Medela Special Needs feeders). They came in and we started using them. She didn't like the Mead Johnson nursers - I had to fight with her to get her to take them. I kept pumping. Finally, she took the Haberman. She ate more than an ounce in an hour for the first time in her life. Success. I broke down to my mom, three weeks after we came home. At 2 in the morning, when I couldn't take it anymore. She worked second shift, and I called her to come over so I could sleep. Only, I couldn't. And when she got to the house, I just cried. I held my beautiful, precious, perfect daughter, and I cried. I couldn't even feed her, because every time she needed to eat, I had to pump. I hated that pump. It represented everything that was out of control about the situation to me. <br />
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I remember meeting with the local plastic surgeon when she was two weeks old. Being told that, since it was "only a cleft palate", he wouldn't recommend that she avoid having children of her own. I remember being horribly offended by that, astonished by it. Even as he said it wouldn't be an issue for her, I remember thinking, so what if it was? I remember being told they would do nothing until she was a year old. I remember being told about Shriner's. I remember Daddy Mac and I agonizing over whether or not to apply, discussing it with our doctor, each other, our parents. I remember turning in all the paperwork. I remember getting the call that they wanted to see her. I remember getting hearing tests done that she failed. Going to the ENT. Having tubes placed - her first surgery. I remember thinking how hard that was, and how terrifying her palate repair was. I remember flying to Chicago, meeting the cleft team. I remember crying right there in the team meeting when they told us they were going to take her on as a patient. I remember getting the call a month later to schedule her palate repair. I remember agonizing over which date to chose - two weeks before Christmas or two weeks before her birthday? We decided to wait. I remember flying out for the surgery. I remember being a bundle of nerves. Staying with her in the hospital the night before, I think I slept maybe two hours. I cried again. I cried a lot then. I remember them giving her versed in pre-op, then taking her back. I remember walking out of pre-op and crying again. I remember feeling lost - where should I go? What should I do? Daddy Mac was with me, so was my mom. I remember them paging us that she was out. The ENT came out first - they replaced one tube, the other they left. Then the plastic surgeon. Everything went great, they will come get you when she's ready in post op. I remember seeing her for the first time in post-op. I cried some more. Saw the black thread they looped through her tongue, so that if they needed to work on her airway they could quickly get her tongue out of the way. That was scary. I remember her screaming, crying as she came out of anesthesia (she has never liked anesthesia). I remember holding her, crying more. Someone made me go eat. My mom held her. Daddy Mac held her, held back his tears. Maybe he cried at the hotel. I remember they let me feed her that first day with syringe. She was much happier after she ate. I remember the nurses telling me that babies rarely ate that well after surgery. She drank 20 oz the first day. I remember taking her down to the cafeteria for breakfast the next morning - she ate yogurt, applesauce, oatmeal, formula. More than she'd ever eaten. They let us go at lunch time. By that night, she was back to herself, mad about the arm restraints. I remember the stares in the restaurant we ate at that night, in the airport the next day. <br />
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I remember every second. I still cry about it, sometimes. At night. When I write these posts. When we get good news. When we heard she needs surgery again, she doesn't need surgery, she needs speech therapy, she doesn't need speech therapy anymore, she's normal. Normal. What is normal? That always runs through my mind. SHE is normal. She is our normal. She is perfect. I remember that. Mommy Machttp://www.blogger.com/profile/01412419080792133545noreply@blogger.com0tag:blogger.com,1999:blog-1127888877733712833.post-59789115895092050302013-01-07T22:22:00.000-06:002013-01-07T22:22:19.790-06:00New Year, New UsYou know those pesky things called resolutions? Millions of people pledge to change things about their lives on the first day of the New Year. Generally by the first week of February, 99% of those changes have fallen by the wayside. <br />
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I generally avoid resolutions. I don't like the idea of setting myself up for failure. Resolving to make major changes generally results in failure. You are much more likely to be successful if you start small and work your way up to big than if you jump straight to big. This year I am going to make some big changes, hopefully by making small ones.<br />
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It's no secret I have struggled to lose weight. I used to be skinny. Age and kids and stress and life have added up to about forty extra pounds that I currently need to shed. Last year, I tried. I failed. I lost about seven pounds and never got any further. This year, I hope to change that. But instead of making a resolution to lose forty pounds, I have chosen to make a change in my LIFE. So my "resolution" is to eat healthier, and exercise every day. It's easy to let yourself get caught up in excuses (as I have already done - however, in my defense, I have been sick for the last four days. Like, don't want to get out of bed because your body feels like it got hit by a truck sick.). I'm hopeful that, instead of having an end goal number in my mind, if I have a plan to change my lifestyle, I will see better results. <br />
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I'm also resolving to spend more time with my family. The last two years have not been easy, for me or for us. There is a LOT going on in all our lives, and sometimes it feels like I'm doing everything I can to just make sure I don't drop the ball, rather than actually playing with it. I don't really know how I'm going to do it, what with work, and school, and activities, and work, and kids and, well, LIFE. But I'm going to try. We are going to designate "family night" every other Saturday, where we play games, or watch a movie together, or go to the park, or a ball game, or something. We are also going to start doing "date night" between Daddy Mac and I once a month. Even if it's just having the kids go to Grandma and Grandpa's and renting a movie, we are going to make an effort to have time for us. Time we have struggled to make in the last two years. <br />
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The last thing we are resolving to do is to save some money. We have a lot of necessary expenses, some rather large, which are unavoidable. But at the same time, we need to start trying to budget more. Or better. I'm hoping this will resolve some of the stress in our lives. We are doing the weekly savings plan - the first week you put $1 in savings, the second week you put $2, and so on. By the end of the year we should have roughly $1300 in savings. It's not a lot, but it's a LOT more than we currently have. <br />
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So, what are you resolving to change this year? Oh, and HAPPY NEW YEAR from all of us! Mommy Machttp://www.blogger.com/profile/01412419080792133545noreply@blogger.com0tag:blogger.com,1999:blog-1127888877733712833.post-25053476058770655382013-01-01T21:24:00.001-06:002013-01-01T21:24:04.715-06:00Hello 2013!I don't know where the time has gone. This year really zoomed by for me.<br />
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Monster Boy turned EIGHT last week. I can't believe he is already that old - it seems like just yesterday that he was born. He broke his wrist the middle of December. He fell off the vertical ladder on the play structure at his school. That was quite the adventure - but I am really proud of how well he handled the whole thing. We go next week for X-rays and hopefully cast removal. I know we are both ready to be done. He will have to wear a brave for a couple of weeks, but that will be much easier to deal with.<br />
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Miss Sunshine is coming up on the three year anniversary of her palate repair, followed quickly by her fourth birthday. My babies really aren't babies anymore, which makes me a little sad. <br />
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The holidays were quite busy and we are all still trying to recuperate from the craziness. It was a very nice year for us with family time. Just lots of running around. Our normal routine starts back up on Thursday. Of course, once we get settled in, the routine changes again when my classes start. But we are ready for it. <br />
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I hope everyone had a wonderful New Year's Eve! 2013 is going to be our year, I just know it! Mommy Machttp://www.blogger.com/profile/01412419080792133545noreply@blogger.com0tag:blogger.com,1999:blog-1127888877733712833.post-81286923230100808302012-12-03T21:35:00.002-06:002012-12-03T21:35:50.062-06:00Time Flies...I can't believe how quickly the time is passing us by. I looked today and realized it had been over a month since I last posted. <br />
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Things are pretty much the same around here - I haven't got a lot of updates. Miss Sunshine has been complaining increasingly of her legs hurting, especially at night. She has been diagnosed in the past with growing pains, and we believe this is what we are again experiencing - she grew two inches between July and October! In fact, when we went in October for a visit, she had broken 30 pounds (finally!) and was almost 31 pounds, and was 39 inches tall. That has moved her up to the 22 and 47th percentiles, respectively. Considering that she was in the 5th and 12th percentiles at her 3 year well child check - we are ECSTATIC! She's FINALLY gaining ground. Everything else has been business as usual with her - she had a fantastic report at the dentist office last week. She will go back to our local ENT in February, along with her yearly physical and immunizations. We hope that her tubes continue to function, and in absence of that, that she would test negative for fluid so that another surgery would not be necessary. They are keeping a close eye on her tonsils, as they are anatomically enlarged (this is their natural size) and could cause problems down the road. We of course do not want them to be removed unless necessary, but neither do we want to face possible breathing problems. She has Daddy to thank for those huge tonsils - his are crazy big as well. <br />
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Monster Boy has been our health issue child lately! I did get a referral to see a pediatric allergist when I took him in for his school physical in August. He literally breaks out from everything. I can't use any kind of fabric softener, and we are limited to two kinds of detergent, both of which are expensive. He can't use any kind of sunscreen at all - he has a photoallergic reaction with them, meaning that while indoors the sunscreen has no effect on him, but once he gets in the sun, he has an allergic reaction to the chemical reaction that occurs when the sun is combined with the sunscreen. We are thankful that he is dark complected so burns are less of concern for us, and we use sunshirts instead of sunscreen to protect his skin as much as possible. Well, when we went to the allergist, I was expecting to get a laundry list of allergies. We didn't get that at all! He only had one reaction, to dust mites. However, we did find out that he has asthma! I felt badly about that - after all, he is almost eight years old - how did I miss that? He has a very mild form of asthma, almost borderline. He has been prescribed a rescue inhaler, along with a daily dose of Zyrtec. Its likely that the dust mite allergy is the cause behind his asthma, and the hope is that the daily dose of Zyrtec will control the allergy enough to rid him of the asthma. We go back later this month for a follow up test on that. He is doing amazingly well at school - in fact, they wrote up an IEP for him to get advanced level work in all core areas! He tested beyond END of year expectations in Reading, English, and Math at the BEGINNING of this school year. He is reading at nearly a fifth grade level. He is so incredibly smart, we are so very proud of him. Discipline wise he has been doing much better at school this year as well, although we do need to work on his talking out of turn in class. That is about the only thing he ever gets in trouble for, but it's on a pretty much daily basis. <br />
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I got admitted to the nursing program, and will start my clinicals in January. I am excited and nervous, and have a lot to get done between now and then. Fingers crossed that I get everything handled I need to! Other than that, things are going well for us now. I will try to not shirk so much through the holidays, but I make no promises. I will continue to update as we learn more on Miss Sunshine and where we go from here with her cleft.Mommy Machttp://www.blogger.com/profile/01412419080792133545noreply@blogger.com0tag:blogger.com,1999:blog-1127888877733712833.post-21073710280133990662012-10-20T22:22:00.001-05:002012-10-20T22:22:09.611-05:00I got accepted!My acceptance letter for nursing school came this week! I'm so excited and nervous about it. I have a contract to sign, and paperwork to fill out for scholarship applications. And now I have to start checking out other scholarships online. But I made it in! My hard work has paid off and I'm so incredibly glad. It really makes the work of the last year worth it. And I am one step closer to where I feel I am supposed to be. I am also considering becoming a lactation consultant specializing in cleft infants. Because so few LCs have experience or are properly informed about breast feeding and cleft - but I have personal experience. I think that also helps when talking to new parents. I know it would have helped me immensely to have someone who could relate to what I was going through, and I would love to be that person for other people. I'm seriously considering it. <br />
Mommy Machttp://www.blogger.com/profile/01412419080792133545noreply@blogger.com0tag:blogger.com,1999:blog-1127888877733712833.post-20881655965602199362012-10-07T01:21:00.002-05:002012-10-07T01:21:34.939-05:00It's cold (and late!)I am having studying-induced insomnia. I bet you didn't even know there was such a thing. I've been going so long reviewing for my upcoming exam that now my brain doesn't want to turn off. In a way, it's nice, because it's allowed me to do a lot of studying tonight. But it's also bad, because now I am going to be exhausted tomorrow, which will not be conducive to more studying. Sigh. <br />
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We are having a major cold snap here today - and watching Monster Boy's soccer game this morning was torturous. It was SO cold, and Miss Sunshine just kept yanking the blanket that I actually thought to take with us off as some sort of game, so it really didn't help much. We probably looked hilarious - there was Monster Boy trying to run down the field with his hands in his pants pockets (Why boys can never find their gloves is beyond me - we purchased this child three pairs of gloves last year. Do you know how many pairs of gloves he has now? None. He has three mismatched gloves.), me wrestling with Miss Sunshine to keep the blanket on both of us and her hood up on her head, and Daddy Mac zipping his jacket all the way up and jiggling his legs to keep them warm. <br />
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We finally caved and turned on the heater tonight. Tomorrow we will have to do more home improvement type things, as we found a leak from our master bath tub into the laundry room today. Fun times. It looks like the leak is around the drain, so I'm hoping that we just need to reseal it, perhaps replace the drain kit. I'm praying that it isn't a crack in the tub itself - I don't see one, but you just never know. The good news is that the ceiling in the laundry room is unfinished, which means we have an unobstructed access to the leaking drain. The bad news is that it's going to require a ladder and over head work to get this done. And neither of us have experience replacing or repairing a bathtub drain. So this should be interesting. <br />
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I know we are really over due for a picture update. I will try my best to get some work done on that once I get through my exam this week - the coming weekend is fall break for me so I'm hoping that I can get a day or two of non-school related stuff done, including uploading the several hundred pictures currently hanging out on my camera. Mommy Machttp://www.blogger.com/profile/01412419080792133545noreply@blogger.com0tag:blogger.com,1999:blog-1127888877733712833.post-55017393424143174242012-09-25T14:40:00.000-05:002012-09-25T14:40:04.486-05:00VisionI took Monster Boy and Miss Sunshine in for vision screenings yesterday. Monster Boy has been complaining of headaches at school, and has been telling his teacher he can't see the screen. So, in we went. Since our state does a vision screening program for three year olds that our eye doctor participates in (meaning it's free for us!) I decided to kill two birds with one stone and just have Miss Sunshine checked out as well. <br />
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I was a bit nervous going in. I myself have HORRENDOUS vision. I've been in glasses since the third grade, and I went from perfect vision to blind as a bat in a summer's time. Daddy Mac has also been in glasses since about that age, so we know the kid's risk of needing glasses is high. <br />
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Since we were taking Monster Boy in for his complaints, I figured our luck would be that either both kids would need glasses, or just Miss Sunshine would need them, because God has a sense of humor with our family on these things. <br />
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Lucky for us, neither kiddo needed glasses this trip! Monster Boy did have some slight degeneration in vision - at his last vision test he was 20/10 in both eyes, and right now he is about 20/25-20/30 - still within normal range, and nothing that the doctor felt corrective lenses were necessary for, but it does mean we need to keep an eye on him in the future - as it is likely he will at some point cross that line where he needs glasses. Miss Sunshine has perfect vision, but is showing some signs of a very slight astigmatism in one eye. That could also have been due to how fidgety she was during the exam, so again the eye doctor wasn't too concerned and said to just continue to have her screened yearly to make sure all is well. <br />
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Monster Boy did have to have his eyes dilated as one test came back strange, but once they were dilated everything tested normal. Of course, he's been milking the "blurry, light hurts my eyes" thing since then - I wound up sending a note in to his teacher letting her know his vision is fine but that he may be complaining today due to the dilation. <br />
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Now to figure out why he is having headaches... I have a theory that it's either A) attention related or B) he's getting overheated during recess. So we are going to try and watch what time the headaches happen and see if it's consistent with recess times. He hasn't been complaining as much for the last 10 days or so, and it has been cooler here those days, so I'm fairly confident that it's the heat. Mommy Machttp://www.blogger.com/profile/01412419080792133545noreply@blogger.com0tag:blogger.com,1999:blog-1127888877733712833.post-72566214354636307772012-09-08T14:16:00.001-05:002012-09-08T14:16:28.429-05:00The ears have it.Miss Sunshine had an ENT visit this week. Our local ENT wants to see us every six months until she no longer needs the tubes, and possibly longer, depending. So, in we went.<br />
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Her tubes are still in place - amazingly. Her hearing is within normal range in both ears. Her left ear was FULL of wax, which she would not let the ENT clean out. He said we may at some point need to sedate her and clear it out, but for now, it's not interfering in hearing or tube function so we will just leave it. He did say that he is not as optimistic as Shriners about her not needing anymore sets, but we will just keep watching and waiting. He also said her tonsils are very enlarged, but he would not remove them because it could affect her palate repair and speech. She has never had an infection in them, or strep throat, so they are just naturally large (thanks, Daddy!). We will keep an eye on this as well. It's ironic, really. Likely the reason she has done so well with minimal nasal tones in her speech is because of the size of her tonsils! <br />
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So that's our cleft update for now. We go back to the ENT in six months, won't see Shriners for two more years. We are in the maintenance phase now.Mommy Machttp://www.blogger.com/profile/01412419080792133545noreply@blogger.com0