tag:blogger.com,1999:blog-19961269133003396682024-03-05T22:21:07.423-08:00Different PathsJust my way of sharing our familes journeys through life with five kids, one of whom has extra needs!jfrench2000http://www.blogger.com/profile/15852185474458526050noreply@blogger.comBlogger27125tag:blogger.com,1999:blog-1996126913300339668.post-9156775075871700632013-09-09T23:13:00.001-07:002013-09-09T23:14:02.654-07:00<div style="text-align: left;">
<span style="font-family: inherit;">I remember longing to be a parent and imagining rocking my baby peacefully, singing lullabies. I envisioned myself baking cookies with them, making arts and crafts, kissing away boo boos and tucking in angelic children at night. I could see in my dream that one day they would grow up and have a perfect family just like mine. Occasionally there was even an image of the rare sleepless night of rocking and cuddling a sick child. </span></div>
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<span style="font-family: inherit;">I've had all of those experiences. Well except the growing up and having a family part, I am NOT ready for that yet! I've also had so many more that I never would have imagined I would. So many great experiences. Hearing my children say "I love you," kisses blown through windows and across fences, mastering math facts, sounding out a word for the first time, celebrating school achievements, watching them take their first step, shoot their first goal, throw their first ball, speak their first sentence and then the second and third and one thousandth. I've had the joy of taking a walk with nowhere to be and seeing the world through their eyes, reliving some of my favorite childhood experiences. I've searched the Christmas tree lot for that perfect tree and then enjoyed steaming hot cider. I've watched Easter Egg Hunts where one child is elated with finding just one egg. Celebrated birthdays, anniversaries, anything and everything. Being a parent is wonderful. To love someone solely because they are and to revel in all the delightful things they do. </span></div>
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<span style="font-family: inherit;">That love is also why being a parent is so terribly tough. I never knew how much more I was signing up for. The tears I've wiped might number in the millions, I've cleaned up gallons upon gallons of vomit, wiped more bottoms than I care to count. I've hugged my children too many times as they've poured out a broken heart to me and known as I cried with them that I can't fix this. I cannot take the pain away. I've kissed my baby good-bye in the operating room and I've left my hysterical son on a kindergarten playground when his schedule was altered and he could hardly cope with that huge change. I've restrained my sensory defensive child just to trim their fingernails until we learned how to soothe him before and after. I've sat in IEP meetings where every one of my child's deficits is highlighted and gone over. I wouldn't change any of this because strangely it is all these negative moments that make me love my children all the more fiercely and why my heart aches so much tonight.</span></div>
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<span style="font-family: inherit;">For several days Elijah has told me his stomach hurts. Since he is otherwise acting pretty normal I haven't thought much about it but tonight he kept coming down for two hours after bedtime because his stomach hurt so I tried a different tactic and asked him to tell me about school. I knew transitions are hard for him and he was a little slow with adjusting to a new classroom and grade. I wasn't prepared for what I got. His little body just melted into mine as he told me about how confusing it was and how he wants to be in his classroom more. (He is pulled out for almost half the day). He knows the other kids are doing stuff while he goes to speech, occupational therapy and the resource specialist and he is worried about missing out on fun things and falling further behind. He then goes on to tell me he is really scared he can't do second grade math. "First grade got so hard at the end and I know second grade is going to be harder. I want to be smart but I don't know if I can do it." He goes on to say how the class goes so fast and he is just so confused about what he should be doing. At this point tears are streaming down both of our faces. I hugged him and rubbed his back and told him how much I loved him and how smart I believe he is. I promised to talk to his teachers and see if we can work it out that he misses less or perhaps differently. Even still when he went back to bed I just felt sad. </span></div>
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<span style="font-family: inherit;">I wish I had said so much more. I wish I had said something like this.</span></div>
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<span style="font-family: inherit;">You are smart Elijah, so incredibly smart. I wish I could make learning easier for you. I wish I could make autism (feels like such a nasty word tonight), learning disabilities, visual processing challenges, language delays and sensory processing disorder all disappear. Your brain works differently than mine but it doesn't make you any less smart. Most boats don't fly and most airplanes won't sail across the ocean but both can get you to Hawaii they just have to do it differently and it's likely going to take the boat a little longer but they both can get there just differently. Those riding on the boat might have more fun and see a whole lot more along the way. Being different is okay. I wish you could see how incredibly intelligent you are. I know IQs mean nothing you your young mind but yours is up there buddy and that's pretty impressive. You remember things like no one else can. You have amazing problem solving skills and you think outside the box. You ask good questions and you desire knowledge. I am so afraid sometimes in our effort to teach you to read and write that we are going to lose some of that. You are amazing because even though school is hard, hard work you come back every day. Even though it is hard to write the letters and you cannot always remember which way they go, you still made me a birthday card. I love that when you are happy and excited your whole body gets happy and excited too as if you can't wait to tell the whole world about what you've just discovered. You know everything there is to know about Legos, Avengers and Justice League and what fits into which category. I don't know half of what you know in that regards. You never forget a fact about animals, the earth or space. You've probably never been taught the scientific method but I've seen you use it. You love to discover what works and what doesn't. The why and how of things. You are one of the most amazing kids I have ever known. Most importantly you were created by a God who loved you before you were ever born and He still loves you, even more than I love you and that's a heck of lot. At least to the moon and back a dozen times. You are loved! You are special! And you are just right just the way you are!</span></div>
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<span style="font-family: inherit;">Sadly I didn't say that though I did mumble some encouraging things but thankfully I have tomorrow. And tomorrow I shall try to communicate all of this to him and go to school and try and make things better for him. If there's one thing you've got Elijah, you've got a mama that has your back and I will always try to get what is best for you.</span></div>
Anonymoushttp://www.blogger.com/profile/03946451520889462100noreply@blogger.com0tag:blogger.com,1999:blog-1996126913300339668.post-7713902862904187272013-08-06T13:16:00.002-07:002013-08-06T13:42:46.711-07:00Almost A Mom's Worse NightmareToday started like typical summer days in my house. When I got up at 6:30 there was already a child logged onto Lego.com on the computer. We all slowly got out of bed and shuffled around wrapped in blankets to ward off the early morning chill. Outside was wet and foggy but like most August days it promised to be warm and sunny later on. At 8:20 we rushed around in a panic realizing we had to be leave for swim lessons in 20 minutes. We were out the door in time and at the Coast Guard pool 6 minutes before Elijah and Mary had to be in it only to realize that we had the skirt for Mary's swim suit but lacked the rest. Thankfully Naomi isn't too much bigger than Mary and their lessons are at different times so we dressed Mary in Naomi's suit and they were off to the pool. <br />
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I sat and watched their lessons and marveled at how well they were doing and how far they have come. Both Mary and Elijah wanted nothing to do with swim lessons at the beginning of summer. Mary didn't want to be told what to do and Elijah didn't want any part of his head to get wet. Here I sat watching Mary swim a few feet at a time and Elijah gracefully float on his back and then do six bobs in a row without a whimper, a whine or a tear. I thought to myself, watching him in the pool where he is trying everything that is asked of him and listening to the instructor you would never know he has autism. <br />
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Afterwards Naomi and Bethany had their lessons and then everyone changed into warm dry clothes we headed for home with the fog slowly lifting. There is some bickering about the correct way of singing "Under the Sea." We stop at city hall and pay our water bill and then a few minutes later pull up in front of the house. I help Mary out of the car, remind everyone else to get their suits and then go unlock the house while everyone else climbs out of the car. We head inside and everyone runs off while I do some laundry and prepare lunch. <br />
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Thirty minutes later I am walking from the laundry room to the kitchen right past the front door when I notice movement in the car. I think it must be a shadow from the tree but stop and look again. Someone is in the car! I run out the door the ten feet to the car and Elijah is in the car crying. I let him out as ask, "Have you been in the car since we got home?" He replies, "(Unnamed Sibling) slammed the door in my face and I've been trying to get out." My heart is in my throat and I am trying not to cry as I hug him and pull his hot, sweaty body from the car. It is only in the 60s but it is much hotter in the car. I am extremely grateful that the car is parked in the shade. This could have been so much worse, so very much worse. In my head I am berating myself for not checking that everyone was out of the car. How did I not notice? What kind of parent lets this happen? I thought he had done what he always does when we get home and ran upstairs to his room. I had let myself be lulled by his adherence to routine and even though I didn't see it I assumed the routine was followed. I thought he knew how to exit the car. I can't help but think about what if I had been a few minutes later. While holding tight to Elijah and giving him a nice cold drink of water I did what most scared, upset parents would do and I yelled at the sibling who slammed the door in his face. I even told them "Elijah could have died just because your were mad at him." Then I berated myself over and over again in my head while the child cried on time out. <br />
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A little later when I had myself together a bit better I asked the child's forgiveness for screaming at them and explained in a much calmer way why it is so terribly awful and dangerous to slam the car door in someone's face, especially someone who cannot easily open it. This afternoon we will all go out to the car and we will not come in until all my children can unlock and open the doors completely on their own.<br />
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Tonight will be so much like any other night. The kids will take baths, we will read stories and then we will say our prayers and tuck them into bed but tonight I will be so incredibly grateful for this normalness because we came too close to it being very, very different.Anonymoushttp://www.blogger.com/profile/03946451520889462100noreply@blogger.com1tag:blogger.com,1999:blog-1996126913300339668.post-85234944700842282722012-02-10T22:38:00.000-08:002012-02-10T22:38:43.377-08:002nd Annual Feeding Tube Awareness Week - Raising Awarenss in the Medical CommunityToday you get a twofer as both yesterday and today's topics are about raising awareness in the medical community. Thankfully, most of our experiences have been very good, but there are three things in particular I would like to tell the medical community as a whole, if I could.<br />
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The first is that my daughter is already traumatized, she has had tubes stuck up her nose, and other places we won't mention, needles everywhere, pokes, prods, woken up with arms tied down, masks on her face and many other things that she never understood. Please don't do anything to make that worse. And if you are a doctor, nurse, MA, PA, NP, receptionist, custodian or anyone who works at a medical facility don't ever let someone pull a Bard Button out of a child without pain management. That five minute experience was likely the worst Naomi ever had, she's had more painful things done but the pain was managed. The Bard Button incident happened one November day. Naomi's first g-tube was a Bard Button which she had for six months to allow her stoma to heal. We were now going to switch it to a MicKey button that was lower profile and could be changed out at home. We went into the procedure room had an okay visit with our GI nurse practitioner who nearly reduced me to tears when she told me I had to get more volume into my constantly puking three year old. After that, she called in the GI doctor to switch her to a MicKey button. He looked at me and said "This is going to hurt a little." Well I was prepared, we'd done blood draws, injections, ng tubes, I had a book to distract her and Naomi lay on the table with her head in my lap while I held the book so she could see it but not her belly. The doctor pulled out a metal thing and stuck it into her button and pulled. Naomi let our an unearthly scream and he yelled at me to grad her hands which I did, he continued to pull and Naomi continued to scream, not the scream of a little girl but the scream of an injured animal. Twice the metal device he held slipped off the button and after about two or three endless minutes the Bard button popped out with stomach contents and blood all over me, the doctor, and Naomi and Naomi, the nurse practitioner and I in tears. Then I got a look at that thing. The tube part was the diameter of a pencil or 18 french to be exact, it was held in place by what looked like half of one of those bouncy balls you can get for a quarter out of the machines at the supermarket and it had just been pulled through an opening the size of a pencil. They give her an amnesiac before putting a mask over her face in the OR and didn't even suggest so much as Tylenol before this. Naomi continued to cry for nearly two hours after that procedure. That was the last time we ever went to that hospital. I hope no other child or adult has to go through that without pain management.<br />
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The second thing I'd like the medical community to know is that when it comes to questions about food, I need you to ask very specific pointed questions. Every time we go to the pulmonologist after we get her weight and height, o2, temp and blood pressure they ask their routine questions. How often does she need her inhalers? Have any of her medications changed? Any procedures/hospitalizations since the last visit? How is her eating? I do really well until the last one. I just don't know what to say. I don't know what they are asking. Is she meeting her nutritional needs? I think so. Is the tube feeding going well? No puke this week. Is she eating well orally? Well compared to last visit, yes, compared to her classmates, no. At the pediatrician they will ask me what type of milk she drinks and how much. I just stare, they stare back, I stare a little more and then finally say she doesn't drink milk and I want to follow that with it must say that a thousand times in her chart. If you want to know about her eating be specific and I can answer that but with general questions I don't know what to answer.<br />
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Finally the last thing I want them to know is my daughter is a little girl made up of many parts and they're all connected. She is not two ears, a nose and a throat, nor is she a GI tract, a brain and nerves, or a set of lungs and their airways. Please communicate with her other doctors, you accomplish so much more that way and LISTEN to her therapists, they have spent far more time with her than you have. She is a complete human being and even if you specialize in one area you need to see the picture as a whole, also as she ages she deserves a voice too, please talk to her even if she chooses not to respond.<br />
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I do want to close in saying we have met many clinicians, some we liked, some we didn't like and some we loved. I do truly believe that each one does want to make Naomi better and for that I am deeply grateful.jfrench2000http://www.blogger.com/profile/15852185474458526050noreply@blogger.com0tag:blogger.com,1999:blog-1996126913300339668.post-37036126384260679062012-02-08T20:59:00.000-08:002012-02-08T20:59:45.218-08:002nd Annual Feeding Tube Awareness Week - How Has Awareness Changed MeI've been contemplating what to share today for 48 hours now. How has awareness about feeding tubes changed me? I've always thought I was pretty accepting of people and their differences. I guess the biggest change would be that I understand hunger better, I know what it looks like to starve. Naomi was truly starving before she got her feeding tube. About a year after Naomi got her tube I was watching a video from World Vision with my small group from church. In the video they were talking about hunger throughout the world and then it showed a picture of a little boy in Africa who had a ng tube. I watched him lay there with that tube, so spent from his starvation that he could not push the fly that crawled across his face away. Very slowly that boy became more than a starving little boy in Africa, he became my daughter. I remembered the days when she didn't have the energy to play, the times when she felt too awful to even snuggle. My daughter never got to the point that little boy was at simply because she was born in a better zip code. Had my daughter been born in the horn of Africa I might not have her. That moment, that realization I think changed my life forever and if I hadn't understood what starvation is I couldn't have had that moment. Since then I feel different about those who are hungry. I have much more compassion. Hunger makes you cranky, hunger gives you brain fog, hunger makes you tired, hunger makes it harder to work, harder to eat and harder to live. I needed to do something. Since then our family has chosen to sponsor children in Madagascar and the Philippines, we give money to build wells in Haiti, we regularly donate to our local food pantry and I am now there every week with <a href="http://www.ladybugconnections.org/" target="_blank">Ladybug Connections</a> striving to make a positive difference in the lives of others. We got a second chance with Naomi and I hope to give others a second chance too.<br />
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I know it seems a strange jump feeding tubes, to starving children in Africa, to hungry families here in my town but really it isn't that far of a stretch. We all need to eat and some of us need help doing so.<br />
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You can help the hungry abroad by supporting groups like <a href="http://www.worldvision.org/" target="_blank">World Vision</a>, <a href="http://www.ncm.org/" target="_blank">Nazarene Compassionate Ministries</a>, <a href="http://www.doctorswithoutborders.org/" target="_blank">Doctors Without Borders</a> or a small group like <a href="https://www.facebook.com/UnaVidaDR?sk=info" target="_blank">Una Vida</a> who gives dignified work to marginalized women in the Dominican Republic.<br />
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You can help the hungry locally, by finding your local food bank and giving food, money or time. Every single time I step foot into the grocery store I buy something for the food pantry, this is double good, the food pantry gets food and I make less unnecessary trips to the store. Also find out if you have a local soup kitchen, they could always use help.<br />
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Finally you can help the medically hungry, those who can't eat orally by supporting <a href="http://www.feedingtubeawareness.org/" target="_blank">Feeding Tube Awareness</a>, the <a href="http://www.umdf.org/" target="_blank">United Mitochondrial Disease Foundation</a>, <a href="http://www.curedfoundation.org/" target="_blank">The CURED foundation</a>, your local Children's Hospital, or you could help me with my <a href="https://www.facebook.com/events/294734040583892/" target="_blank">toy drive</a> for Children's Hospital Oakland, the toys feed the spirit of hospitalized children.<br />
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These lists are nowhere near complete and please feel free to suggest other great organizations in the comments. <br />
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Just remember you can't save the world BUT you can be the world to someone.<br />
<br />jfrench2000http://www.blogger.com/profile/15852185474458526050noreply@blogger.com0tag:blogger.com,1999:blog-1996126913300339668.post-34586486535763139112012-02-07T20:13:00.000-08:002012-02-07T21:01:39.482-08:002nd Annual Feeding Tube Awareness Week - A Day in Our LifeToday I will give you a glimpse of what a typical day for us is like, except that we don't have typical days so how about yesterday. Yesterday started early with beeping, it is a sound somewhere between a commercial truck backing up and the fryer at your favorite fast food restaurant. Naomi's pump is alarming saying "No Food" or "No Flow In" or "No Flow Out" and I still half asleep try to diagnose and correct the problem without turning on any lights or making any noise and waking the kids. Thankfully this only happened once in the wee hours of the morning. Then we had the 5 a.m. wake-up call because Naomi's bladder is bursting. Most days she goes back to sleep and yesterday she did. I get up and unhook Naomi from her feeding pump often before she wakes up and flush her tube with an ounce or so of water. We get everyone up and the morning madness begins. Trying to get lunches packed, breakfast eaten, hair brushed, clothing on and appropriate footwear and outerwear for everyone. Naomi is served breakfast and yesterday like most days she refuses to eat anything. Some days she even goes as far as dumping the plate on the floor, those are not good mornings. We head off to school dropping the biggest kids at the elementary school and then taking Naomi to preschool. Naomi LOVES preschool. She has a mid morning snack there, which I am told most days she partakes in. I pick her up and noon and then we come home for lunch. Yesterday she cried and told me she didn't want lunch but when I insisted for the eighth time that she must come to the table, but didn't have to eat, she finally relented and came. When she saw that she could use mini cookie cutters to cut her peanut butter and nutella sandwich into any shape she wanted she was excited to make it stars and ate about 3 stars which was about 1/4 of the sandwich. She also took a few sips of chocolate milk and one bite of an apple. Depending on how she had eaten orally that day she gets a bolus feed by tube after lunch. Yesterday she got 6 ounces of blenderized diet (real foods we blend up in our high speed blender to be smooth enough to go through her tube). We feed this by 60 ml (2 ounce) syringe. The rest of the afternoon was spent playing, watching a movie and just being four. We have another battle to get her to the dinner table (she insisted her tummy was full despite it having been 5 hours since she last ate). Once there after carefully sliding her salmon off her plate she did eat about 1/2 cup of brown rice with Parmesan cheese and a few nibbles of broccoli. After dinner is some quiet playtime, a bath and off to bed. At bedtime, Naomi gets hooked up to her overnight feed which is 750ml (about 24 ounces) of pre-digested formula and a jar of baby food fruits or veggies. We tuck her in bed hook her up and pray the pump will be nice to us tonight and not alarm too many times.<br />
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<tr><td class="tr-caption" style="text-align: center;">Our crazy nighttime setup. Bethany in the top bunk, Naomi on the bottom, Mary in the trundle and hoping nobody trips on the tubes. And craftily having Mary's head at the opposite end as Naomi's so she doesn't tug tubes and cause huge messes overnight.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Feeding her penguin and she gets a bit of water.</td></tr>
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This was yesterday, some days are more complicated as she isn't on any medications or in a vomiting episode right now and she is hardly getting fed during the day in hopes of better oral eating. Sometimes she is on slow continuous feeds when her gut is really unhappy and is hooked to her feeding pump 16-23 hours a day. Some days are less complicated as she did have a point in time where she only got a small overnight feeding.<br />
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But really other than being tethered to her pump at night and some short day time feedings, Naomi is a typical little girl. We do have to care for her tube which involves keeping it clean and dry, changing it out every 3 months, which we do at home and then we have to order her supplies as they aren't things we can get at the drugstore.<br />
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<tr><td class="tr-caption" style="text-align: center;">Posing for the camera! And no she didn't hurt her nose she just loves Band-Aids and attention.</td></tr>
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So there you have it a day with Naomi.jfrench2000http://www.blogger.com/profile/15852185474458526050noreply@blogger.com0tag:blogger.com,1999:blog-1996126913300339668.post-59462870348921749872012-02-06T11:22:00.000-08:002012-02-06T11:22:00.774-08:002nd Annual Feeding Tube Awareness Week - Why Naomi Has a Feeding TubeI touched on this yesterday, but here it is a little more in depth. First and foremost, we don't know exactly why Naomi doesn't eat. There is not one overarching diagnosis that can explain it. We have learned through meeting other families with similar children and many therapists who work with kids who struggle to eat that feeding problems in children are usually quite complex. Here is what we do know about Naomi. She had GERD (gastro-oesophogeal reflux disease) which adults know as heartburn, she had a moderate to severe case that got worse with age rather than better. Her last ph probe though shows that was completely resolved. She was anemic, anemia alone can lead to anorexia (lack of appetite). She has Reactive Airway Disease, which is a sneaky way of saying she has asthma without calling it asthma. When you struggle to breathe you need more calories and in young children it is often difficult to coordinate breathing and swallowing. She had obstructive sleep apnea caused by large tonsils and adenoids, that also obstructed her ability to breathe through her nose and made swallowing more difficult. Her tonsils and adenoids came out in April on 2010. Her mouth muscles are weaker than a typical child her age. She has had periods of time where her motility slows way down and her stomach and intestines "stall" and food just sits there, then she has had times when her stomach speeds way up and "dumps" its entire contents into her intestines, dumping syndrome. Her intestines rebel and much vomiting ensues. <br />
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None of these issues alone explains Naomi not eating and growing well but together they start to paint a picture. A picture that says eating is painful, eating is uncomfortable, eating is scary, eating is exhausting. While still very young Naomi learned that for her all these things were true. Most children learn that eating feels good, eating is fun, eating is exciting, eating gives me energy. Eating is not instinctual (sucking is, but not eating). Most kids learn that eating is good because as a newborn they cry because they are hungry (don't feel good), something is stuck in their mouth, they suck, they get food and their hunger is satisfied. They feel much better, eating is good. However when they feel worse after eating or something scary happens while they eat (choking and gagging, struggling to breathe) they learn that eating is bad. So in a nutshell Naomi learned that eating is bad and now we struggle with teaching her that eating can be good. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikfubR8_3XfNhJnPGEM6JUsmpI-6wDL2LfIFaMrM52gvDyOy8bZ6fF-rPGhu5Mh4L7Ek_eqOCRYyg5jp66MtbjV13TUx8aYAGXkYRXuIrc1MmHtlGAU-1acEaqOgZpWmORjrKZy_hriQc/s1600/P1040731.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikfubR8_3XfNhJnPGEM6JUsmpI-6wDL2LfIFaMrM52gvDyOy8bZ6fF-rPGhu5Mh4L7Ek_eqOCRYyg5jp66MtbjV13TUx8aYAGXkYRXuIrc1MmHtlGAU-1acEaqOgZpWmORjrKZy_hriQc/s320/P1040731.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Participating in Birthday's with cousins and her favorite princess on the cake helps teach that eating is good.</td></tr>
</tbody></table>jfrench2000http://www.blogger.com/profile/15852185474458526050noreply@blogger.com1tag:blogger.com,1999:blog-1996126913300339668.post-52824719172216799522012-02-05T21:38:00.000-08:002012-02-05T21:38:57.006-08:002nd Annual Feeding Tube Awareness Week - What Awareness Means to Me.<div style="text-align: left;"></div><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyQi0hoawtDN7tRLw3l0kaZEfs7ZpCa0YO7lNzl3uYHDKTjNqkGcfxZaKewAketVZX6e-24G5jkiOipqtqiYdRApsjuDpkw5p9lP44dJez7A9NSQ2TxXRZu6V6mEbCXrr-Y17Xffijixc/s1600/DSCN0040.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyQi0hoawtDN7tRLw3l0kaZEfs7ZpCa0YO7lNzl3uYHDKTjNqkGcfxZaKewAketVZX6e-24G5jkiOipqtqiYdRApsjuDpkw5p9lP44dJez7A9NSQ2TxXRZu6V6mEbCXrr-Y17Xffijixc/s200/DSCN0040.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi wearing instead of eating her food</td><td class="tr-caption" style="text-align: center;"><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi82Cs52LdoOSYAzLLz5RdCIBeCmDT8G9uTlc2CZoyF8Rvv4hk9-JwV3El_eOEiKZkj4a2XAPihGXC-t50n-8tjx1YqasYlqS88YZAJBjgA4A6kTXrRwS9bXc9Os97wCi9q_K0UJBjGl7k/s1600/DSCN1579.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi82Cs52LdoOSYAzLLz5RdCIBeCmDT8G9uTlc2CZoyF8Rvv4hk9-JwV3El_eOEiKZkj4a2XAPihGXC-t50n-8tjx1YqasYlqS88YZAJBjgA4A6kTXrRwS9bXc9Os97wCi9q_K0UJBjGl7k/s200/DSCN1579.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">At almost 2 years.</td></tr>
</tbody></table>I never thought I'd be the mother of a child with a feeding tube. I never thought my children would be anything other than perfect. I should have figured out that things don't pan out like we hoped and planned when I developed pre-eclampsia with my first pregnancy and Sam was born after my first (and only) private Leer jet flight from Valdez to Anchorage for an urgent induction, but how quickly we forget the things that weren't according to our plans, especially when you're raising children. After Sam, came Beth and after Beth came Eli , after Eli came Naomi and by that time I really had the hang of this mom thing. I could nurse a baby, do dishes and read a book to one of the older kids all at once. I could safely navigate four small children through Target and come out with my sanity still in tact. I'd given up on store bought baby food, I had the food mill down and my baby was going to eat spice. No bland diets for this one and then something changed. Naomi didn't grow like the others had. First she was dainty, then petite, then small, then downright skinny. Naomi also didn't eat quite like the others. She struggled to swallow purees, not quite sure what to do with them, she weaned herself from the breast not long after turning one, but didn't pick up drinking other things to make up for it. We tried all sorts of tricks to get her to eat more and better, we gave her high calorie formulas mixed with half and half, I fed her with a sippy cup while she slept because she would suck out of instinct. We worked so hard to get Naomi to grow, we went gluten free and started iron supplements when tests indicated celiac and anemia. Not too long after Mary was born she started vomiting. At least a few times a week and often hours after she had eaten. We were lost. We couldn't feed our baby and make her grow. We tried medications that have the side effect of stimulating your appetite but they only had a short-lived effect.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjT0pc_ZAPu52gBqkkqO-DqxPyRNW6nc6RGYak6j7L8QP1To6obdbBrE1tAD1Cz4jo3-AXC9VKxncpgV6naCdEvNcsAborG5kp_8l3N8JtS6TVeod6fS_ICmbYB8kqHgo1sidyx8tcZI8g/s1600/P1010766.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjT0pc_ZAPu52gBqkkqO-DqxPyRNW6nc6RGYak6j7L8QP1To6obdbBrE1tAD1Cz4jo3-AXC9VKxncpgV6naCdEvNcsAborG5kp_8l3N8JtS6TVeod6fS_ICmbYB8kqHgo1sidyx8tcZI8g/s200/P1010766.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">In the hospital with the ng tube.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcxtgdRiX_wmVNKLneQEps9ck7n6jSn9mJrss_z7ZAw8_ldIEMsDUhGZcMiLXjq-dZSIrB3VWfpyNAm63oh9Hsuq6wzWjBXNNI_CwnE5oBex5HVzJqE0ra7IJGsOSiKo4s-svhISo20Qo/s1600/IMG00208.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcxtgdRiX_wmVNKLneQEps9ck7n6jSn9mJrss_z7ZAw8_ldIEMsDUhGZcMiLXjq-dZSIrB3VWfpyNAm63oh9Hsuq6wzWjBXNNI_CwnE5oBex5HVzJqE0ra7IJGsOSiKo4s-svhISo20Qo/s200/IMG00208.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Squishing berries in her hair at feeding therapy.</td></tr>
</tbody></table>Finally at 2 1/2 years Naomi wasn't just skinny, she was starving. She had quit growing and her body was on the verge of consuming it's own organs to give her energy. At that point we finally conceded that Naomi needed a feeding tube and she was admitted and received an ng tube. The tube allowed her to start growing again but came with it's own difficulties, Naomi was disturbed by the tube down the back of her throat and she completely quit eating. What a bittersweet realization that was. The exact thing that was allowing my child to grow was preventing her from eating. Two month later Naomi got a more permanent g-tube, a tube that goes through the abdominal wall directly into her stomach and two years later she still has it. We don't know why Naomi wouldn't eat other than eating was uncomfortable for her. We don't know why she did and still does vomit. We don't know why sometimes her stomach and intestines move food too slow but we do know that Naomi has come a long way since then. She is GROWING!!! She is HEALTHY!!! She is EATING!!! but not enough to survive. Naomi can and does eat orally but she is still g-tube dependant. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7RhcQE0pNRQkzRlg0x0eMA_eKPlks65sbDtkz_PtlYa5_ZVIADOObhoODoH5Zmr3Y7D2Q3MZJFEw5jNhzYzxnv5xar0UAdbY5QFx31DGBdVl-KJBLsDgCm3m1gz6xkZK-z4s1nn0DIfc/s1600/Naomi+tubie+snack.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7RhcQE0pNRQkzRlg0x0eMA_eKPlks65sbDtkz_PtlYa5_ZVIADOObhoODoH5Zmr3Y7D2Q3MZJFEw5jNhzYzxnv5xar0UAdbY5QFx31DGBdVl-KJBLsDgCm3m1gz6xkZK-z4s1nn0DIfc/s200/Naomi+tubie+snack.JPG" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naomi can feed herself.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkmIxhYM6m8BuWRdOVp7m7Yi1_W-Nk1p4cfzMEkJ7ooJBjPz8Bwtu8onsRYu6qLwFzzf9OmzO8qCf183gcQ4czMAC98KNznb4MXhCPa5xonVbffSfi30FacaK8kdJX2kZeE6ju1eSne_g/s1600/girls+olsburg+church.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="112" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkmIxhYM6m8BuWRdOVp7m7Yi1_W-Nk1p4cfzMEkJ7ooJBjPz8Bwtu8onsRYu6qLwFzzf9OmzO8qCf183gcQ4czMAC98KNznb4MXhCPa5xonVbffSfi30FacaK8kdJX2kZeE6ju1eSne_g/s200/girls+olsburg+church.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She eats on the go too with her backpack.</td></tr>
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Okay, so finally getting to the point. Awareness means to me that Naomi can go to school and be accepted by her peers as someone who just eats a little different. Awareness means going to the ER or to some doctors and having them understand the journey we've been through. Awareness means that another mother whose toddler is getting a tube for the very first time might not think she failed to feed her child, as I thought, but instead will know she is giving her child health. Awareness means people asking questions instead of staring. And most of all awareness means we don't have to hide that we are different. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaw9s4u9YT_wx2UPWwhyAMQn3ckdeiPHyouI5omQxaa-Bf6uKiWAUY4XbRbiLORtXZxsxRlzpUOlpLeKvQDFCJ1COhkQQOjcgferimet6WcAbMpH0Q-SbY_mMxzHDLHtQGqvNOKyNTGXw/s1600/P1050215.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaw9s4u9YT_wx2UPWwhyAMQn3ckdeiPHyouI5omQxaa-Bf6uKiWAUY4XbRbiLORtXZxsxRlzpUOlpLeKvQDFCJ1COhkQQOjcgferimet6WcAbMpH0Q-SbY_mMxzHDLHtQGqvNOKyNTGXw/s320/P1050215.JPG" width="320" /></a></div>Awareness means not thinking of Naomi as disabled but instead thinking of her as super-abled. Naomi can eat without moving a muscle, now that's impressive!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEYm7TyPnqRemOv7dA87Ij1Wdng7VGWfxkll2ygcxSCVXJLmm-N3WYZf4PeLVXVA4JKw5yjGKnc-sUlRfa-owgXuwKiZlaE2y5y69smlBDa5fRO5aEz9Y5KPezi6MT2XHf7AIk5899ZBU/s1600/super+tubie+silly+sis.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="202" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEYm7TyPnqRemOv7dA87Ij1Wdng7VGWfxkll2ygcxSCVXJLmm-N3WYZf4PeLVXVA4JKw5yjGKnc-sUlRfa-owgXuwKiZlaE2y5y69smlBDa5fRO5aEz9Y5KPezi6MT2XHf7AIk5899ZBU/s320/super+tubie+silly+sis.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">It keeps rotating this pic, but here's a Super Tubie with her Silly Sis!</td></tr>
</tbody></table>jfrench2000http://www.blogger.com/profile/15852185474458526050noreply@blogger.com1tag:blogger.com,1999:blog-1996126913300339668.post-35836881610980231892011-05-10T09:04:00.000-07:002011-05-10T09:05:53.574-07:00A Whole New Do!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3sONzSuQ8xPwIWAev-nNT6s8q3_8KllcoF4XXosZy38wSDGd_AbrJ-yPBIs305x6AgqAnuM6BqIpMmJZ0AwRgJ2nkmejGznmVTCvNGB3d2DqD72W4XHzA6GvuF81wqmK6ImhRmoARJ4s/s1600/Elijah+Before.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320px" j8="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3sONzSuQ8xPwIWAev-nNT6s8q3_8KllcoF4XXosZy38wSDGd_AbrJ-yPBIs305x6AgqAnuM6BqIpMmJZ0AwRgJ2nkmejGznmVTCvNGB3d2DqD72W4XHzA6GvuF81wqmK6ImhRmoARJ4s/s320/Elijah+Before.JPG" width="240px" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">This post is long overdue, but I wanted to wait till we had shocked all our family in person. Elijah has been clamoring for over a year to get a haircut like Sam's and daddy's. I have nothing against crew cut or the regulation military cut, whatever you'd like to call it, it's just that I love Elijah's hair, thick beautiful blond locks. Elijah is my biggest (for his age) and I just want to cherish his babyhood as long as I can but he likes to remind me that he is five and five is quite big. So the second week of April we took the plunge and let daddy cut his hair.</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhWDEauTFVUtqUJ8lFWcYz6K1_Rt7_kEoktB45e4WR-J_-wduamsgmWpU6zSAB0MJVnJ5KpEmmmJ7lykc8n9yUPh-DgXXxQLTcAaUgUDYIXHqpW_ufAj4-aEoypF56A3kusN7ItoRzFXQ/s1600/P1030432.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240px" j8="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhWDEauTFVUtqUJ8lFWcYz6K1_Rt7_kEoktB45e4WR-J_-wduamsgmWpU6zSAB0MJVnJ5KpEmmmJ7lykc8n9yUPh-DgXXxQLTcAaUgUDYIXHqpW_ufAj4-aEoypF56A3kusN7ItoRzFXQ/s320/P1030432.JPG" width="320px" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Once Daddy got started I began to have regrets. I never thought I was attached to Elijah's hair. He was growing up very quickly in a matter of minutes, instead of slowly over weeks and months. And daddy cut it shorter than I had anticipated. I think I almost hyperventilated as I watched all those beautiful locks drop down into the bathtub. I did realize Elijah does have some awfully cute freckles on his head. These are new since his bald stage from birth -2 years. </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0qbrMGK0a_HIJdNra9CKUANeUIz2ua_HosCLumnV-2-_hOY4XAhEInXTqU4m9J3DzFa3eU4UcsQFZP9qMwFLzDIoyxTF-G-SwR0h-wJdauYIgT_j9CSnoNcTwUH6G9-wF7afmWGn8PjQ/s1600/P1030434.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240px" j8="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0qbrMGK0a_HIJdNra9CKUANeUIz2ua_HosCLumnV-2-_hOY4XAhEInXTqU4m9J3DzFa3eU4UcsQFZP9qMwFLzDIoyxTF-G-SwR0h-wJdauYIgT_j9CSnoNcTwUH6G9-wF7afmWGn8PjQ/s320/P1030434.JPG" width="320px" /></a></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;">Elijah loved the new hairstyle immediately. After all he had lobbied for it for nearly a year.</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5twQNo9ZtwTtJ-k0xPEfQWDRrqLyCOlDhovYBDnrojD3gGqkL8_OG-LFyyG0iapAoOGRU_Hgqh6rAsY9W8koVx3rYgZfL2aBEbgjV8fndO18DH_IcgKLTYBhCuVsqW1p9mKoB4ASdCEY/s1600/eli+admire.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="221px" j8="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5twQNo9ZtwTtJ-k0xPEfQWDRrqLyCOlDhovYBDnrojD3gGqkL8_OG-LFyyG0iapAoOGRU_Hgqh6rAsY9W8koVx3rYgZfL2aBEbgjV8fndO18DH_IcgKLTYBhCuVsqW1p9mKoB4ASdCEY/s320/eli+admire.JPG" width="320px" /></a></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;">Although a bit slower, I am coming to love it, how could I deny my little boy such glee, even if it makes him look so much older to me. I must remember that five is quite big.</div>jfrench2000http://www.blogger.com/profile/15852185474458526050noreply@blogger.com0tag:blogger.com,1999:blog-1996126913300339668.post-65768589218309972022011-05-09T07:50:00.000-07:002011-05-09T07:50:17.975-07:00I received this in an email on Mother's Day from a special mom friend Judy. Judy and I would probably never have met if it weren't for our special children and now although we see each other only monthly and communicate sparingly online, I count her as a cherished friend. <br />
<br />
One thing this journey with a special needs child has taught me is that joy shared gets multiplied and burdens shared are divided. <br />
<br />
So to all my mom friends I cherish you and the support you give me, and for those journeying in Holland with me I cherish you all the more.<br />
<br />
<br />
TO YOU, MY SISTERS<br />
<br />
By Maureen K. Higgins <br />
<br />
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters." <br />
<br />
Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. <br />
<br />
All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. <br />
Something wasn't quite right. Then we found ourselves mothers of children with special needs. We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes. <br />
<br />
We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry. <br />
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in <br />
special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.<br />
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We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.<br />
<br />
We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.<br />
<br />
We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip. <br />
<br />
But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.<br />
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But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.jfrench2000http://www.blogger.com/profile/15852185474458526050noreply@blogger.com0tag:blogger.com,1999:blog-1996126913300339668.post-48088956801686354572011-04-08T08:29:00.000-07:002011-04-08T08:29:44.754-07:00Dear Congress...I understand your having trouble agreeing. <br />
<br />
That all of you want it your way and only your way.<br />
<br />
And you think your doing what is best for your constituents and the American People.<br />
<br />
I think you're all full of it. Have you thought for one minute what a government shutdown means to the thousands of Federal employees and the military? It means no pay. And here are a few of the details. The military will not be paid, not a cent but will continue to serve. They will work for an undetermined period of time without any compensation. Since they are working they have no opportunity to try to earn any extra income to do things like buy groceries or pay for a prescription. And worse, the Federal Employees are won't work and may or may not receive payment for that time, no one seems to know AND they still need their supervisor's permission to go and seek any other work. I heard senator Ron Paul saying that we will just need to go to our landlords and ask them to wait to be paid. That is what everyone does. I have a benevolent landlord and that might work with her, it might even work with our utilities. I wonder how that would go over at the grocery store? Do you think I can waltz in there, fill my cart with groceries and ask them to let me pay next week? Somehow I doubt it. How about the gas station? After all my husband is going to have to continue to commute to work without pay. What do you think the attendant will tell me when I ask to pay sometime in the future when Congress gets its act together? How about the toll taker on the bridge? Or the bus driver when the gas runs out?<br />
<br />
I am thankful that my family has built up some savings in the last year and we can make ends meet for a short time without pay. However having been a military wife for 15 years I know the financial situation in many military households, the money runs out before the month. By the end of the pay period the checking account has only change, the car is running on fumes, and dinner gets quite interesting as you try to figure our what you can make with the remnants of your cupboard. Many military families are stretched so thin that just a child getting sick and needing to buy a bottle of Motrin can be a financial stress. Imagine what a late paycheck would do?<br />
<br />
I am glad dear senators and congressmen that you have taken care of yourselves, you won't have to think about these things. Your mortgage will be paid, you'll have food on the table and gas in your car. Some of you will give your pay to charity which I admire, but tell me how does that help the military and federal employees make ends meet without a paycheck? <br />
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I sign off with one last suggestion for you. Since you are acting like young children in your bickering and refusal to even try and relate to what the other side is saying I would suggest you do what I make my children do. Sit down with your adversaries on the other side of the aisle, hold hands, look into each others eyes and say five nice things about each other and MEAN IT. I like your clothes doesn't count. Then sit down and have a discussion and compromise with real give in take, instead of stomping and pouting. If my 3 year old can do it, so can you.<br />
<br />
Sincerely,<br />
<br />
Heidi French<br />
Coast Guard Spouse<br />
American Voter<br />
Mom to 5jfrench2000http://www.blogger.com/profile/15852185474458526050noreply@blogger.com1tag:blogger.com,1999:blog-1996126913300339668.post-33518576537561978052011-03-14T23:53:00.000-07:002011-03-15T10:00:54.658-07:00Happy 2nd Birthday Mary Evelyn!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhImDfeUw0PCRIer4idYj6GIwTn1snUfsBFUz1aFrrFq5p8jmvGq4GZA_SMQb1y8XFGdynBbLJTpWbeh7kJnTQ2l2yPWqZwF6ReuygxtiZLFLPDLCU2Pk45uv3leThufN_-RRLLgRLI-eI/s1600/P1030200.JPG" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="300" q6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhImDfeUw0PCRIer4idYj6GIwTn1snUfsBFUz1aFrrFq5p8jmvGq4GZA_SMQb1y8XFGdynBbLJTpWbeh7kJnTQ2l2yPWqZwF6ReuygxtiZLFLPDLCU2Pk45uv3leThufN_-RRLLgRLI-eI/s400/P1030200.JPG" width="400" /></a></div>Two years ago, in the wee hours of the morning, James and I made the crazy drive into town while I was in hard labor, wondering if we'd make to the hospital on time. Little did we know the surprise in store for us. We were expecting our fifth child and the last one had come in just about four hours so we knew the rush was on. We were met in the emergency room parking lot by my sisters and eager staff who refused to let me walk up to labor and delivery, although I insisted I could. We were whisked into a labor and delivery room and one nurse took my vitals while the other nurse checked my cervix and exclaimed she's at 10 centimeters. A few minutes later she informed us that the baby wasn't coming head first. The presenting part was an elbow. They roused the on-call doctor (as it was about 3:30 a.m.) who came in an discovered that the baby was indeed sideways trying to come out elbow and shoulder first. Without getting too much into anatomy let me just say that doesn't work. So I went from we'll have this baby any minute to we need to do a c-section and quickly because if my water broke (which amazingly it hadn't) the baby's umbilical cord could be compressed underneath it. The hospital had to call in a very grumpy anesthesiologist and I was wheeled down to the OR and surgery commenced at 4 a.m. Because of the baby's position they had to make a much longer incision than usual. Mary Evelyn French was born at 4:39 a.m. She weighed 6 pounds 15 ounces and was 19 1/4 inches long and other than needing a little extra stimulation to get breathing was fine. I wish I could say the same for myself. Mary's birth took me much longer than any of the others to recover from.<br />
<br />
Mary was born at a difficult time in our lives. Naomi had just been diagnosed with celiac and was still struggling greatly to grow. Two days after Mary and I were discharged we were at a speech and hearing evaluation with Naomi. By the time Mary was two weeks old she had been to two medical appointments for herself and many more for Naomi. Being the baby has it's advantages and Mary has never been at a loss for an audience. From the moment she learned her grins and laughs delighted the other kids so much she has been our family entertainer and if being nice doesn't get everyone's attention, she'll get it being naughty. <br />
<br />
Mary is the most curious spunky little girl I have ever known. We've thought about starting a service to ensure your home is childproofed. It is quite a simple business plan. We will drop Mary off at the clients home for half an hour, if there is anything remotely possible to get into Mary will be in it. She's stacked stools on chairs, opened a childproof lock or two and has sonar abilities that can tell if a bathroom door has been left ajar anywhere in the house. And given a minute or two she can make toothpaste into hair gel, flood the kitchen floor, eat half a box of hidden candy and draw three masterpieces on the wall and the newest appliance. <br />
<br />
Despite her constant "trouble," Mary is truly a delight to have around. She freely gives kisses intermixed with headbutts and has a delight in the world around her that can only be seen through the eyes of a small child. <br />
<br />
Happy Birthday Mary Evelyn. Mommy loves you!jfrench2000http://www.blogger.com/profile/15852185474458526050noreply@blogger.com2tag:blogger.com,1999:blog-1996126913300339668.post-20787714151440545382011-03-11T20:07:00.000-08:002011-03-11T20:07:28.854-08:00Pinewood DerbyLast night was the AWANA pinewood derby. My kids love this event. I love this event. It's a lot of fun, but it is also a great reminder of one of life's lessons better learned early. Not everybody wins. Actually most people lose. In a society that gives an award for everything, it is kind of refreshing to go to an event where most of the kids leave with only the satisfaction of having tried and putting forth their best effort. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMcESvfCsDOKlHL9deNk2exVc3nS16CmNju5Qd7_faNU-nLqX5vImuF0LM3_oc0AyA5YlKPzeMUVbBdY7WE1xbNzDUznsfO85SSILRxuOhMhzC9bZkHbH0A0p7vUFIFE6rJmdEh8Obbo4/s1600/P1030075.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" q6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMcESvfCsDOKlHL9deNk2exVc3nS16CmNju5Qd7_faNU-nLqX5vImuF0LM3_oc0AyA5YlKPzeMUVbBdY7WE1xbNzDUznsfO85SSILRxuOhMhzC9bZkHbH0A0p7vUFIFE6rJmdEh8Obbo4/s320/P1030075.JPG" width="320" /></a></div>Learning this lesson isn't always easy. All the kids had a great time designing and painting their cars. They went with high hopes of how their cars would do in the races, but Naomi was the only one who left with a trophy. She got third place for design in the Cubbies division. <br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMf6kiMe-CX_hbxBqbuATV3upeHfIPesRNrrp9MfDlyjMtSLmQMIwqCTZIhs0kaxSdfzD1Dvy1ADaIbdpf5F3pIh9x5aaLQkKe8SJ3e7ow0BqsjN1qXhXoUW5U98lZhLY2CvXwImgVooI/s1600/P1030076.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" q6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMf6kiMe-CX_hbxBqbuATV3upeHfIPesRNrrp9MfDlyjMtSLmQMIwqCTZIhs0kaxSdfzD1Dvy1ADaIbdpf5F3pIh9x5aaLQkKe8SJ3e7ow0BqsjN1qXhXoUW5U98lZhLY2CvXwImgVooI/s320/P1030076.JPG" width="320" /></a></div>Elijah took losing the hardest. He cried. Big, fat crocodile tears. Disappointment is hard to take but it is part of life and as much as I hate to see him cry, I want him to learn that we often lose and when we do it with grace and then learn from it sometimes were better off than if we had won. Overall the kids had a good time and the oldest three are already talking about how to improve their designs for next year.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnQP3O27vJe9CU1qkV1BGeoetnSRmpqvHcxAzVCEWSHaMJn4m-HAmcbcuMGQIdqDBnfO8W5mzccqUyv97HUJ8cQojJJCtyNQuwERgWIJnhtpigLXB-WZ7kMNmcdwyuZzus2Fty2GUux08/s1600/P1030079.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" q6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnQP3O27vJe9CU1qkV1BGeoetnSRmpqvHcxAzVCEWSHaMJn4m-HAmcbcuMGQIdqDBnfO8W5mzccqUyv97HUJ8cQojJJCtyNQuwERgWIJnhtpigLXB-WZ7kMNmcdwyuZzus2Fty2GUux08/s320/P1030079.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUjO7USFewxDcQz44fC65xbxh5ww-gLAJUdxY3fpEsm6j93aPonTXFAodcXY8F-Csb-6FbOQDaPIgeoy6a9Oqf-TZdGkOPoZ3fusIIluTtmxQJhTwVRZpUT247E6bO1QfkGFgIUJmwOVo/s1600/P1030080.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" q6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUjO7USFewxDcQz44fC65xbxh5ww-gLAJUdxY3fpEsm6j93aPonTXFAodcXY8F-Csb-6FbOQDaPIgeoy6a9Oqf-TZdGkOPoZ3fusIIluTtmxQJhTwVRZpUT247E6bO1QfkGFgIUJmwOVo/s320/P1030080.JPG" width="320" /></a></div><div align="center">I swear Naomi wasn't clobbering Sam with her trophy.</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBpBiBEPMQ255tRInBe3JQIkFlpsrlw1Qv8uhkeKqC12CVLPU-f8pdP15DFq8mfHViQfMVp8M3le3mcpl3A8qHKxU2lFCkz_6dweQQT5JYY_n1kaUHALtjpPS9NX83XnUeYprp-_JPuKw/s1600/P1030082.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" q6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBpBiBEPMQ255tRInBe3JQIkFlpsrlw1Qv8uhkeKqC12CVLPU-f8pdP15DFq8mfHViQfMVp8M3le3mcpl3A8qHKxU2lFCkz_6dweQQT5JYY_n1kaUHALtjpPS9NX83XnUeYprp-_JPuKw/s320/P1030082.JPG" width="320" /></a></div><div align="center"></div>jfrench2000http://www.blogger.com/profile/15852185474458526050noreply@blogger.com0tag:blogger.com,1999:blog-1996126913300339668.post-23301532245938926872011-03-09T18:54:00.000-08:002011-03-09T21:44:15.840-08:00To My Friends With Special Children...We always gravitate to those like us. We join knitting circles, book clubs, hiking groups and community service organizations. We watch the game with other sports fans and we go to the beach with other beach bums. Whatever your fancy there is a group for you. When we become parents, at least the females among us, we often join mom's groups. <br />
<br />
But there is one group that none of us aspire to join and that is support groups for parents of medically fragile or challenging kids. We join these groups for the same reasons we join the others. We want to be with someone like us. We want someone we can relate to. We want to vent to people who REALLY get it. We want someone to lift us up and celebrate each milestone no matter how obscure or non-eventful it might seem to others. We pass on doctor's names, funny little tips (how else would I have found out that the syringes that are made for feeding baby squirrels are highly superior to the medical grade ones), the latest research and tried and true wisdom. We also share each others sorrows. For as much as there is great joy, there is great pain. As I become more and more involved with other mothers who have medically challenging children, I know more and more who are suffering, from depression, from despair and from grief. <br />
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This is something I did not realize was part of the package of getting the support, encouragement and understanding that I so desired. The grief of one mom, is the grief of us all. Even if our child is not suffering now, we realize how fragile they really are. Nothing can be taken for granted. Every day children are hurting, they are in pain that doctor's cannot touch. Every day their parents are watching, hoping, praying, researching and feeling utterly helpless because their child suffers and they cannot fix it. Every day a parent gets bad news, really bad news. The kind you hear about and think I don't know if I could handle that. Parents get told their child is dying, there is no cure, there's nothing else we can do and then they have to go in and decide if and when and how to tell their child. They grieve their child's future while trying to make the most of every day. They appear strong, almost saint-like but inside they are all churned up, so many feelings, so much pain. I am here to say they are not alone. I grieve for their children and for them. So do many others. More often than we would like to admit we are unable fix things and the only response is to grieve and pray. Grief is not giving up hope for a future, that is never done. Grief is realizing that something precious has been lost and mourning that.<br />
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To all my friends who suffer with your children, you are not alone. I grieve with you.jfrench2000http://www.blogger.com/profile/15852185474458526050noreply@blogger.com0tag:blogger.com,1999:blog-1996126913300339668.post-49048741798575746472011-02-22T14:58:00.000-08:002011-02-22T14:58:32.002-08:00Turkey Disaster Diverted!Naomi woke up this morning in a pleasant mood. That right there is reason for celebration. Naomi usually wakes up grouchy and there is a host of things that can send her mood into a tailspin in the morning. The trouble is they change every day, sometimes it's eye contact, sometimes I suggest we get dressed to soon, sometimes one of us talks to her and she wasn't ready so a happy girl first thing was exciting. Never mind that I've got too big kids home from school today with a virus, I've got a happy Naomi in the morning so I'm going to celebrate.<br />
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Well not only was she happy but she wanted to EAT right away. I usually cannot interest her in food until 10 a.m. She wanted turkey so Bethany feeling chipper after her Tylenol kicked in ran to the fridge and pulled out our gluten free, nitrate free turkey lunch meat. Naomi started to wail. I thought it was because Bethany got the turkey and she wanted me to but, no, she wanted different turkey. I pulled out some leftover chicken from the fridge and told her it was turkey but she started to cry harder. "NO, I want different turkey!" Bethany and I tried for half an hour to tell her there was no other turkey and this is what we had and she proceeded to cry harder and harder insisting she want different turkey. I finally left her alone to diaper Mary and brush my teeth and hair and came back to a still crying Naomi. I began to think how am I going to get any food into her mouth or a tube with her laying on the floor throwing a fit. In case your wondering tube feeding does take some cooperation or we will have a huge mess and potentially a removed tube. Finally at my whits end, she'd been crying nearly an hour, I asked her if she knew where the "different turkey" was. She got up took my hand and led me into the dining room where the grocery bags of non-perishable food from our last grocery shopping trip sat on the table and pointed to a bag. I peeked in and there on the top was a bag of beef jerky. I pulled it out to a squeal from Naomi. "My turkey!" Turkey disaster diverted and despite two sick kiddos, I think it is going to be a very good day.<br />
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Addendum: As I was getting ready to upload a picture of Naomi with her "turkey" my computer crashed so I am publishing this from my parent's house. Thanks mom and dad! So today turned out to be an interesting day and hopefully the computer guy will be able to fix our computer without draining our bank account.jfrench2000http://www.blogger.com/profile/15852185474458526050noreply@blogger.com1tag:blogger.com,1999:blog-1996126913300339668.post-29146604437331472312011-02-21T20:05:00.000-08:002011-02-21T20:05:55.839-08:00Jelly Belly Basket Weaving - Fun time with the girlsYesterday was a momentous occasion. Bethany wove her first Longaberger Basket. I wove my second and had a great time with my mom, sister, niece, mother-in-law, sister-in-law, Bethany and Naomi (all though she just watched). Longaberger has become somewhat of a family tradition. <br />
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<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">My mom loves Longaberger and gave me my first basket a hand-woven doll cradle as a young girl. I now have a house that is adorned with many baskets and even sold them for awhile. I have wanted to go to the Longaberger homestead for years, but the trip has not happened. But we did get the next best thing. Longaberger came to us. We went to the Jelly Belly Factory in Fairfield, California and with the assistance of expert basket weavers we got to weave our very own one of a kind basket. </div><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFAQpDLjsVPy9yVeVXDEl2LS_lGA-HUo1Ow7_0_1d61BGABEXp60D8vGkL_WiCPWqOX782Domx5weQ2ar14XX-0cQpBTjTCvagUyAGSQO4tZQWLQxC9WcsiM12A5O776WS9mjPfQU0Em8/s1600/Longaberger+Ray.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" j6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFAQpDLjsVPy9yVeVXDEl2LS_lGA-HUo1Ow7_0_1d61BGABEXp60D8vGkL_WiCPWqOX782Domx5weQ2ar14XX-0cQpBTjTCvagUyAGSQO4tZQWLQxC9WcsiM12A5O776WS9mjPfQU0Em8/s320/Longaberger+Ray.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bethany and I with Ray our Professional Basket Weaver.</td></tr>
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</div>We also got to sample Jelly Bellies and fudge. What could be better? Naomi loves all the different yellow Jelly Bellies. Bethany loves to try all of the Jelly Belly recipes to make different appetizing flavors like root beer float (2 root beers and 1 cream soda) and Blueberry Muffin (2 blueberry and 1 Buttered Popcorn). We discovered it doesn't matter what language you speak Jelly Belly has the recipes written out for you. There was German, Greek, Arabic and Japanese to name a few.<br />
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The whole family was going to go but alas poor Sam woke up in the morning with a 102 degree fever so daddy and Sam stayed home. We left Mary too. Please don't tell her she missed anything special. And Elijah chose to spend the day with Papa. We opted not to go on the tour this time. We've been at least half a dozen times already. The tour isn't that spectacular that multiple trips are required but the abundant free samples at the end, they even give them to the babies, now that is special. The kids really like the paper hats they give you to wear as well.<br />
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What we thought was going to be a family outing turned into a fun multi-generational girls day out where we got sweet treats and came home with beautiful baskets woven by us! Today was a success for sure.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3C8cKDCg6mnBDFBXdt9R4e3QlBzy_WxvztgaLnvIcrRctOeE2ekbhWCYAfZtILDhp4veThdE9l9EV4tfFWeoA3YpZ12eSlnRGxTx_RqKFc9B_TGbSuj8t-xp7WbSs_R2AljgNfclPzQA/s1600/P1010076.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" j6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3C8cKDCg6mnBDFBXdt9R4e3QlBzy_WxvztgaLnvIcrRctOeE2ekbhWCYAfZtILDhp4veThdE9l9EV4tfFWeoA3YpZ12eSlnRGxTx_RqKFc9B_TGbSuj8t-xp7WbSs_R2AljgNfclPzQA/s320/P1010076.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me, my niece, Bethany, my sister and my mom in front of the Longaberger Basket.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfo2D7f0woiXa7tKH_MASuLpNij_2ojHDZWyTADVlBkPpgTAXW3T7rgrsAd4wxCGbeVI7MsQscIc0_xwWgVgJYVYHZqVKlvMUZzcUSW0tn4mGeyaj1Hmud13AmmTuMjSDYHuPiE2dk8Dc/s1600/P1010047.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" j6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfo2D7f0woiXa7tKH_MASuLpNij_2ojHDZWyTADVlBkPpgTAXW3T7rgrsAd4wxCGbeVI7MsQscIc0_xwWgVgJYVYHZqVKlvMUZzcUSW0tn4mGeyaj1Hmud13AmmTuMjSDYHuPiE2dk8Dc/s320/P1010047.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cousins.</td></tr>
</tbody></table>jfrench2000http://www.blogger.com/profile/15852185474458526050noreply@blogger.com3tag:blogger.com,1999:blog-1996126913300339668.post-32464244790810848912011-02-18T13:02:00.000-08:002011-02-18T13:02:19.762-08:00I've Lost Touch With RealityIt looks like Naomi might be in a good position to try to wean from her feeding tube. She no longer vomits. Words cannot express how happy that makes me. Until you have cleaned vomit from clothing, bedding, furniture, carpet, hardwood, pavement and people daily for a prolonged period of time you cannot understand how blessed mommies of persistent vomiters feel when they get a few emesis free days. She is growing, very slowly, but growing. Her celiac is under control and we are confident in the gluten free diet. She no longer has huge speech delays and is very interested in other children and what they are doing and we finally have a date for her tonsils to come out the end of April so unless the bronchoscopy shows aspiration damage we are planning to start being more aggressive with her oral eating in May.<br />
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Here's my big problem though. I have no idea what "normal" is for a preschooler's eating habits. Although Naomi is fourth in our line-up of children it has been several years since Sam and Beth were little and Elijah isn't a good model to hold Naomi up against. Elijah loves to eat. He recently asked me how much more pounds he would need to be as big as daddy. I told him he'd need at least 150 more. He smiled and replied "Oh good that means I have to eat lots and lots." I sincerely doubt Naomi will ever eat as much as Elijah. So far today Naomi ate one container stage 2 baby food pear-pineapple with colored sugar sprinkles mixed in. I know it is baby food and she is three. It is what she wants, it has some nutritional value so I give it to her. Honestly if she asked for a bowl of sugar, I'd give it to her, I would just try to hide it from her siblings. She also ate about five pistachios. While I was doing laundry Naomi and Mary dumped a Costco container of Parmesan cheese on the kitchen floor. I came into the kitchen to find Mary and Naomi in all their cheesy splendor licking the cheese off their fingers and the floor. I was not happy about the mess, but secretly I was happy Naomi was eating. Licking it off the floor is a bit unconventional and will probably be a problem when she starts school, I don't see the school working with me on that as part of her 504 plan, but she was eating and a calorie dense food to boot. For lunch she requested "gluten-free Nomi oatmeal with chocolate chips" so as I'm sure you guessed that's what she got. She expertly mined all the chocolate chips out so I gave her a second serving of chocolate chips, they were organic, but she was done. She's had a few sips of water today too, she isn't interested in juice or milk at all today. Later this afternoon she may eat a cracker or two or dip some carrots in ranch dressing but it will only amount to a few bites and dinner is feast or famine with her. If she is in a good mood she will often eat 1-2 ounces of meat and maybe a bite of something else, if she is in a bad mood, she will push the food around her plate, dump it on the floor or completely refuse to come to the table. <br />
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Somehow I don't think this is normal, but maybe some of it is. What does a normal three year old eat? What should I be shooting for? This is where I need your help. I'd love to hear what your child does or did eat at three. Please leave a comment, send me an <a href="mailto:jfrench2000@att.net">email</a> or Facebook me. When I can recall what normal is I might have an idea of how far it is we have to go. Right now it looks like there is a huge ravine between us and being tube free and there is a rickety bridge that crosses it but unfortunately it is missing most of the slats that would support our feet. It's pretty scary trying to cross on just the ropes, we get tangled up, swing wildly out of control and spend so much time in fear of falling off. If only I could get a few of those slats replaced....<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHGAqJXP1_TmqwdZjqfaNGgOJhIxzHX5Ue4aMQE5aKj4ONTQWKx7I9YzbWERUIhE0ierWd5enYo3YFk4vKVNr4lUfrWUYxVhuEQnlAwHqiHI9EWLTV-ftEiYFDszaJgtVs1yrPYmPEG3Y/s1600/silly+nomi.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" j6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHGAqJXP1_TmqwdZjqfaNGgOJhIxzHX5Ue4aMQE5aKj4ONTQWKx7I9YzbWERUIhE0ierWd5enYo3YFk4vKVNr4lUfrWUYxVhuEQnlAwHqiHI9EWLTV-ftEiYFDszaJgtVs1yrPYmPEG3Y/s320/silly+nomi.JPG" width="240" /></a></div><div align="center">My not so typical three year old.</div>jfrench2000http://www.blogger.com/profile/15852185474458526050noreply@blogger.com2tag:blogger.com,1999:blog-1996126913300339668.post-51063221349346889652011-02-12T15:06:00.000-08:002011-02-12T15:06:36.681-08:00Feeding Tube Awareness Week Comes to an EndToday is the last day of our first Feeding Tube Awareness Week and I am sad to see it come to a close. This week has done amazing things for me and for the tube-fed community. It has given me a platform and a reason to speak out about Naomi's feeding tube and thus opened up many conversations with friends and acquaintances about feeding tubes. It has allowed me to share what our life is really like and reflect on how thankful I am for a device that I desperately tried not to have as a part of our lives. It has allowed me to network with so many tubie families that I never would have known and I have been able to give and receive encouragement and advice with them. It has also given me the courage to be more open about Naomi's tube. We might even give her a blenderized feeding at the park soon instead of timing the park around our feedings. We've done formula in her pump out and about but never real food with the syringes. Most kids don't have to wait until they get home to have a snack or a meal so why should Naomi. I have realized the only thing stopping her is ME. It will be more work but maybe it will bring a little more awareness to the fact that some of us just need to eat differently. We've also had the chance to cyber-meet several adults with feeding tubes and there stories are really encouraging, I especially like <a href="http://www.feedingtubeawareness.com/Joey.html">Joey's.</a><br />
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Today we are supposed to talk about something positive that has come from the feeding tube and I think this week definitely has been, but the other big plus for us is that Naomi has energy and our life isn't about food. So instead of telling you, I'll show you. We can go play in the fun and the sun at the park (nope I didn't feed her this time, but if the weather allows I bet it will happen next week). I truly believe that if Naomi didn't have the tube both she and I would have been too tired to go to the park. Naomi from malnutrition and myself from spending hours every day coaxing her to eat and hours every night worrying. Yesterday afternoon Elijah, Naomi, Mary and I ran off all of their energy while waiting for Sam and Beth to finish school. Having Naomi and everything that comes with her has made me so thankful for the little things!<br />
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</div>jfrench2000http://www.blogger.com/profile/15852185474458526050noreply@blogger.com2tag:blogger.com,1999:blog-1996126913300339668.post-39052076074600686352011-02-11T17:35:00.000-08:002011-02-11T19:02:30.029-08:00Questions - A Better Response to Those Who Asked and Those Who Wanted to.<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Yesterday on Day 5 of Feeding Tube Awareness Week the topic was reaching out to friends and family. Letting them ask you the questions they have about feeding tubes. Well I posted of Facebook and some did ask and the questions were great. They mainly focused on how does the tube stay in, what happens if it comes out and how long will she have it. I hope to better answer those questions today.</div><br />
<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEit8qXE-CFrudPtIJeZiYqwNudb9T7sRAC_xLPD_Rc6ZnjuUvKr8pF7LW9YL1v00fme4JYKYovjH_51wU3Nv9AefN-WaRXVPg-ikdncnoYh83NZAmj4m1jVZ5ykwMIGXsheungVz4HAyAA/s1600/P1030045.JPG" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" h5="true" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEit8qXE-CFrudPtIJeZiYqwNudb9T7sRAC_xLPD_Rc6ZnjuUvKr8pF7LW9YL1v00fme4JYKYovjH_51wU3Nv9AefN-WaRXVPg-ikdncnoYh83NZAmj4m1jVZ5ykwMIGXsheungVz4HAyAA/s200/P1030045.JPG" width="200" /></a>The type of tube that Noami has right now is a MIC-KEY button, made by Kimberly Clark. This is what it looks like in her without her <a href="http://www.mybuttonbuddies.com/">button buddy</a>. <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUp_cJIuw3GTFGsHiIfj6v6Y3VTm0eXX5arbzgpb9pTaITsnUBaPwAEqtRrZokwynF3lQDKEU2IDR9CLYudQuEawcwoTbcwreXx2OWGifTOglX-ugirINDTlPXUIHuIh0YcW3b_3LlQFs/s1600/P1030043.JPG" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" h5="true" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUp_cJIuw3GTFGsHiIfj6v6Y3VTm0eXX5arbzgpb9pTaITsnUBaPwAEqtRrZokwynF3lQDKEU2IDR9CLYudQuEawcwoTbcwreXx2OWGifTOglX-ugirINDTlPXUIHuIh0YcW3b_3LlQFs/s200/P1030043.JPG" width="200" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR9iHO7vq2SKVfa7lqr70ssVFqGnOFHsxQY1ZiCGYxV4rSdTKXKmSPVL8w2pTYUDACVFNaCI44VQTgeHWPh4EGN4ZilluzNeAjFdB0YJ8IkMswkc_2lIEhD2iimdKU32Tq0afn-YvAK2A/s1600/mickey+button.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" h5="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR9iHO7vq2SKVfa7lqr70ssVFqGnOFHsxQY1ZiCGYxV4rSdTKXKmSPVL8w2pTYUDACVFNaCI44VQTgeHWPh4EGN4ZilluzNeAjFdB0YJ8IkMswkc_2lIEhD2iimdKU32Tq0afn-YvAK2A/s1600/mickey+button.jpg" /></a> There are two pictures: the one of the left just to show you how it looks and the one on the right to emphasize that there are two ports. One that faces out to feed into and one that faces to the side that is attached to a balloon in Naomi's stomach. The balloon is inflated with water and that is what holds her button in place. The bottom right picture I found online and this is what her button looks like. </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Her button can actually be changed out at home and should be changed every three months. We have yet to change it at home as the changes have coincided with appointments with her gastroenterologist but we are feeling braver by the moment and are going to try the next button change at home. We'll do it in the morning on a weekday though, that way if anything goes wrong we can whisk her off to the GI doctor and save ourselves an ER visit. The video I've included is another tubie mom and her daughter Harmony. Laura is quite confident changing Harmony's button and I hope to be the same someday.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><object class="BLOGGER-youtube-video" classid="clsid:D27CDB6E-AE6D-11cf-96B8-444553540000" codebase="http://download.macromedia.com/pub/shockwave/cabs/flash/swflash.cab#version=6,0,40,0" data-thumbnail-src="http://3.gvt0.com/vi/Xcx8qZ_geZc/0.jpg" height="266" width="320"><param name="movie" value="http://www.youtube.com/v/Xcx8qZ_geZc&fs=1&source=uds" /><param name="bgcolor" value="#FFFFFF" /><embed width="320" height="266" src="http://www.youtube.com/v/Xcx8qZ_geZc&fs=1&source=uds" type="application/x-shockwave-flash"></embed></object></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Now can Naomi's button come out? Yep. Has it? Nope. And we are very thankful for that. If it were to come out and we had a spare button we'd pop the spare in and be doing good. But we can't always have a spare as the buttons are expensive and insurance companies don't like to pay any more than they have to so, if we don't have a spare button or the button came out at night and we were unaware until later we have a supply of catheters in a range of widths that we can put into Naomi's stoma (the hole in her abdomen) to keep the placement while we head to the Children's Hospital as they are the only ones likely to have a button in stock. The hole in Naomi's stomach could close in as little as an hour and definitely would within four hours so if the tube comes out timing is everything as we certainly wouldn't want surgery again.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">A lot of you have asked questions about feeding therapy too, what do we do there, does it accomplish anything? I plan to answer those soon along with pictures of a session but I need to either have Naomi do a session by herself or get the permission of Naomi's therapymate before taking and posting pictures.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Today's topic for Feeding Tube Awareness week is to tell about a negative and how it could have been positive but frankly I don't have much negative to report. Thankfully our friends and family have been supportive and willing to work with Naomi and any limitations she may have with her celiac and her feeding tube and we are very grateful for that.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div>jfrench2000http://www.blogger.com/profile/15852185474458526050noreply@blogger.com1tag:blogger.com,1999:blog-1996126913300339668.post-42936744553494999822011-02-09T10:37:00.000-08:002011-02-09T10:37:37.051-08:00Tell Me How to Get to Sesame StreetWe all watched Sesame Street as kids or at least we knew someone who did. For years Sesame Street has shown thousands of different children and adults representing our diverse culture. They have had children and adults of every race, including mixed races. They have had people with Down's Syndrome, those who are blind, use hearing aides and wheelchairs. They have never had a child who is tube fed. There are thousands of tube fed children in the United States alone right now and they would love to see someone like them on Sesame Street. Would you join me in our cause on Facebook <a href="http://www.causes.com/causes/499976">Help Get a Tube Fed Child on Sesame Street</a>. By joining this cause you are showing Sesame Street that thousands of people, not just a few, care about diversity on Sesame Street. Also would you considering writing <a href="http://www.sesameworkshop.org/inside/contact#">Sesame Street</a> and letting them know. Select food as your subject and your letter needs to be 1000 characters or less. Seeing tube fed children in the media would make them more "normal" and accepted in their lives. jfrench2000http://www.blogger.com/profile/15852185474458526050noreply@blogger.com0tag:blogger.com,1999:blog-1996126913300339668.post-4685901115073809012011-02-08T15:56:00.000-08:002011-02-08T19:32:08.401-08:00Blenderized Diet - How Naomi Gets Fed...Feeding Tube Awareness Week - Day 3<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Addressing Misconceptions: What do you want other people to know about feeding tubes? Naomi can have real food. It takes a little more work but Naomi now mostly gets blended up real food in her tube and today we're going to show you how.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiK_oSjL2jnseBq_e7iY4iDRHYme0kEUeH1w7GnUa94fBcKFJzcNl7VYiOMHqSetqB4FNkWazOV04veLezfuFcIVPVTDc9ZO3vLuw74DXPuysX_KxvZg_rEu-CtwwTV1s8BrMmzGP5LhM/s1600/P1020801.JPG" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" h5="true" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiK_oSjL2jnseBq_e7iY4iDRHYme0kEUeH1w7GnUa94fBcKFJzcNl7VYiOMHqSetqB4FNkWazOV04veLezfuFcIVPVTDc9ZO3vLuw74DXPuysX_KxvZg_rEu-CtwwTV1s8BrMmzGP5LhM/s200/P1020801.JPG" width="200" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRqFcciHvEM0K8vW7E6pBLcFpNwCyTpmkULrS27vdXSlaOjtu_rdAcRL5BSwLlAjIhLS0HZ2lJOU4jpLwDSL9KzOjIdUyu6FkbqC5bNYeNAtpQiTrphWuGD646yBhCXxC2wpCq2tjY1jM/s1600/P1020802.JPG" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" h5="true" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRqFcciHvEM0K8vW7E6pBLcFpNwCyTpmkULrS27vdXSlaOjtu_rdAcRL5BSwLlAjIhLS0HZ2lJOU4jpLwDSL9KzOjIdUyu6FkbqC5bNYeNAtpQiTrphWuGD646yBhCXxC2wpCq2tjY1jM/s200/P1020802.JPG" width="200" /></a> </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">So this is what Naomi ate at first. On the left is a 1.5 formula (1.5 calories per milliliter). The four boxes a day equaled 1420 calories, this blew Naomi up from below the growth curve to the 50th percentile so we cut back to a 1.0 formula on the right this was 948 calories. But on both formulas Naomi had lots of tummy troubles. We also really wanted to give Naomi real food. When I read the ingredients of both formulas corn syrup solids was right near the top of the list. We'd also been told by our feeding therapist and members of our local feeding tube support group that children were more willing to eat on a blenderized diet, so we scoured the Internet for the little information there is, found a great online group of people who were already doing a blenderized diet and jumped in. So this is how we prepare Naomi's food and give it to her.</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixpcacVrvyviUbKhWd5BvHevmJUqZPLpC30J7UpQ_RuvUV7dQGnrRR_PX8-T_Ln1ikp0rRjcA6utMs-E8Z6Z_Qb48jS8rlofd7ud9iO9-Z3unk7WvgdczV_sNLs7X7H3tp4eQg1LqH_ww/s1600/P1020756.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixpcacVrvyviUbKhWd5BvHevmJUqZPLpC30J7UpQ_RuvUV7dQGnrRR_PX8-T_Ln1ikp0rRjcA6utMs-E8Z6Z_Qb48jS8rlofd7ud9iO9-Z3unk7WvgdczV_sNLs7X7H3tp4eQg1LqH_ww/s320/P1020756.JPG" width="320" /></a></div><div style="text-align: center;">First we get everything ready. This is everything that went into today's blend, except I forgot to include the almond butter and black beans in the picture.</div><div style="text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgu7Y9nuLMr6b-lJ1drotqgfxvozs_rBIuR6RlylUyr4QPRz0HeKWDrsYiKkLefpmUgk6lPtRp5xhB0tYlqFQlM4qz9cOKWc_6FRGbmKlx6d4r2U6tu-71h_rNK7jIQ_mZhe0ISPtgWeqA/s1600/blender+ready.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgu7Y9nuLMr6b-lJ1drotqgfxvozs_rBIuR6RlylUyr4QPRz0HeKWDrsYiKkLefpmUgk6lPtRp5xhB0tYlqFQlM4qz9cOKWc_6FRGbmKlx6d4r2U6tu-71h_rNK7jIQ_mZhe0ISPtgWeqA/s400/blender+ready.jpg" width="300" /></a></div><div style="text-align: center;"> Then we throw everything in the Vitamix, our high speed blender.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7451_Y1QLxl7pk7cRf339fb3df0g759vYJBi037aqt4vs0eRqjWIRX1uoIlZgf2vrQKNbl7G2Um99Lm7OLA5qs-RyFY6RoW0S7xQBCOKVs8lM3jpUz-zkdo3LqyNlZ5w_vVt5xNXZNZI/s1600/mixin.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7451_Y1QLxl7pk7cRf339fb3df0g759vYJBi037aqt4vs0eRqjWIRX1uoIlZgf2vrQKNbl7G2Um99Lm7OLA5qs-RyFY6RoW0S7xQBCOKVs8lM3jpUz-zkdo3LqyNlZ5w_vVt5xNXZNZI/s400/mixin.jpg" width="300" /></a></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;">And blend, it usually takes about 3-5 minutes of slowly walking up the speeds and then 2 minutes on high to make sure everything is well blended and broken down so there are no large particles to block her tube.</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5hLey2H-lcwTO7598jR2xi4Vs6vXUF_BBPI7IVc0gvdY17JE6DONOlTH7qKL_etKhwbc6r3P0laareH_umg5re1VDI0XAb0cKiEfXVtyOvOMkZuJpGPT9xJIOc8Jg7fz_-33Uig0U6_0/s1600/blended+food.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5hLey2H-lcwTO7598jR2xi4Vs6vXUF_BBPI7IVc0gvdY17JE6DONOlTH7qKL_etKhwbc6r3P0laareH_umg5re1VDI0XAb0cKiEfXVtyOvOMkZuJpGPT9xJIOc8Jg7fz_-33Uig0U6_0/s320/blended+food.JPG" width="240" /></a></div><div style="text-align: center;">Then we pour the blend into 8 ounce glass baby bottles. This blend filled 3 bottles. Do you have to use these bottles? No, but we like them. I prefer glass to plastic and these are a good size for storing. We either store in the fridge or freezer depending on how soon we're going to use it.</div><div style="text-align: center;">Now it's time for a feeding.</div><div style="text-align: center;">First....</div><div style="text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGhDfs-Poqk8FitV0E7QStsYaonkp1tcQb5PIgkxFR1Yayj6wqbeEfNLlDnoDy7HSx3LK2dJPQWGe4y2DXo7W0W6FY3jTUiEmAqwu6-hrn_Kwuk9CMUokQc4VOAPLGwHJWhDaO5XqUNmc/s1600/P1020770.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGhDfs-Poqk8FitV0E7QStsYaonkp1tcQb5PIgkxFR1Yayj6wqbeEfNLlDnoDy7HSx3LK2dJPQWGe4y2DXo7W0W6FY3jTUiEmAqwu6-hrn_Kwuk9CMUokQc4VOAPLGwHJWhDaO5XqUNmc/s320/P1020770.JPG" width="320" /></a></div><div style="text-align: center;">We put the baby to bed, just for the mid afternoon feeding though.</div><div style="text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg14au_XYMe409JmCCIGUObr5gOc2mRPNmOUrB-SLUWKHyv4B0bodZHYhUc3eFI3hPjeq3piUy4cuWiF2jgcawN-VFSPHU46Z3K5Hw3pTNUDrXx0CSeKjlM83kTzfJZofSgq8IefIpV42U/s1600/P1020771.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg14au_XYMe409JmCCIGUObr5gOc2mRPNmOUrB-SLUWKHyv4B0bodZHYhUc3eFI3hPjeq3piUy4cuWiF2jgcawN-VFSPHU46Z3K5Hw3pTNUDrXx0CSeKjlM83kTzfJZofSgq8IefIpV42U/s320/P1020771.JPG" width="320" /></a></div>Then we get everything ready. We put a towel on the couch for Naomi to sit on, we grab baby wipes, her blend which I warmed up to room temperature in sink of hot water, a bottle of water, a 10cc syringe, a bottle of whole milk, an extension set and a 60cc syringe with plunger. The little table was $20 at IKEA and well worth it.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7ZiWrERMUYqq4Xwh6Nqld9BC7hRg3M0TVWi-UNSvDH-F1ehtaw8TxnOMhHD6jEOuLrL4jKFnsiamIw1Frm-35g7YdXJ7AGafr3UhUflXnApru4IZ0ZZRMRFDcQ1Oq4puRJ8LJakNb51M/s1600/P1020772.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7ZiWrERMUYqq4Xwh6Nqld9BC7hRg3M0TVWi-UNSvDH-F1ehtaw8TxnOMhHD6jEOuLrL4jKFnsiamIw1Frm-35g7YdXJ7AGafr3UhUflXnApru4IZ0ZZRMRFDcQ1Oq4puRJ8LJakNb51M/s320/P1020772.JPG" width="320" /></a></div><div style="text-align: center;">Then we attach the extension to Naomi's button and plug the 60cc syringe into the extension.</div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIM9b0c4otZfpqxqw4gsgbUU_FBtenShF1_c6Jp6agxmiRf3_ok_BdYimqUTJY7Z_sevG8EnV0IIBeXjoSpk0dho1JHrlKR7jIdU_nMTcTK2LSxgzyVcIN5LlilvU1Xz6YplrO3QBbEHA/s1600/P1020782.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIM9b0c4otZfpqxqw4gsgbUU_FBtenShF1_c6Jp6agxmiRf3_ok_BdYimqUTJY7Z_sevG8EnV0IIBeXjoSpk0dho1JHrlKR7jIdU_nMTcTK2LSxgzyVcIN5LlilvU1Xz6YplrO3QBbEHA/s320/P1020782.JPG" width="320" /></a></div><div style="text-align: center;">We pour the blend into the syringe.</div><div style="text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNAX86m9xK2PN20diKrxNKLbeOCnCk2_ICc7I3bkH6NXVa1v6SD3wDk9BElZ6EinpUhO-rq1a9w85vO2-gZbHNj_smwlHyvxYkdp4M2LacsJS7vbcKX_UFzPQbfup_ub3srx3z7JQRu8Y/s1600/P1020784.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNAX86m9xK2PN20diKrxNKLbeOCnCk2_ICc7I3bkH6NXVa1v6SD3wDk9BElZ6EinpUhO-rq1a9w85vO2-gZbHNj_smwlHyvxYkdp4M2LacsJS7vbcKX_UFzPQbfup_ub3srx3z7JQRu8Y/s320/P1020784.JPG" width="320" /></a></div><div align="center">Use the plunger to push the blend into Naomi's tummy. Some people gravity feed, let the blend run into the tummy. We make Naomi's blends too thick to do this. When we first started we plunged really slow but now we do three syringes full in about 5-7 minutes.</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2WhBxSBcL1oJFB4o3ld0tnezCHbuNspbJRXTtmyhaJCNnj2chpmarGgT0xpEdksTgZTtDWRLuuJiSteakoD3rD_a3TLj7beM7AOO5v673hG8xhkQSp8HOmQ6OvHOrUmgM2jPE2xZ25Dg/s1600/P1020786.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2WhBxSBcL1oJFB4o3ld0tnezCHbuNspbJRXTtmyhaJCNnj2chpmarGgT0xpEdksTgZTtDWRLuuJiSteakoD3rD_a3TLj7beM7AOO5v673hG8xhkQSp8HOmQ6OvHOrUmgM2jPE2xZ25Dg/s320/P1020786.JPG" width="320" /></a></div><div style="text-align: center;">Then we pour about an ounce of milk into the blend bottle and shake it up and pour the last bit through Naomi's tube.</div><div style="text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuXhH7Cs_mPfUO3FxP7-JGl6eY1vD6uSNkRr-6RnqKV4MWFfnyBpWCDybOfgIES7ZZuVR0IcbbSvA-WuCj5LP5b8B2mkghaWQ9f7KeYjuGhqZhd2__7S0jwzCo4Ra5_-JY-SnrFgf1Bkk/s1600/P1020789.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuXhH7Cs_mPfUO3FxP7-JGl6eY1vD6uSNkRr-6RnqKV4MWFfnyBpWCDybOfgIES7ZZuVR0IcbbSvA-WuCj5LP5b8B2mkghaWQ9f7KeYjuGhqZhd2__7S0jwzCo4Ra5_-JY-SnrFgf1Bkk/s320/P1020789.JPG" width="320" /></a></div><div style="text-align: center;">Sometimes we make a mess, this is why the towel and baby wipes are the most important part.</div><div style="text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgECh-Ypuhao3WMzbtZVdrOZCml2ohXyBBWoVTSjPT6Wl_1a5fznpK4RNJYN8epg6aBQ99ZhfCs3HBPR7N-6R8evMiJTgrxeyTlTgzXCkf2G7tsgaCVoVT4Zk3v4a4Ha8k9U9w_ksnWTuI/s1600/P1020791.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgECh-Ypuhao3WMzbtZVdrOZCml2ohXyBBWoVTSjPT6Wl_1a5fznpK4RNJYN8epg6aBQ99ZhfCs3HBPR7N-6R8evMiJTgrxeyTlTgzXCkf2G7tsgaCVoVT4Zk3v4a4Ha8k9U9w_ksnWTuI/s320/P1020791.JPG" width="240" /></a></div><div style="text-align: center;">Last we flush the tube with water.</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi66jGImF0M4wTcKdRpQjKl2g8pu-E55CdUPjyKq9ooy6aeQBSu3tviSGD2_sB0eoIUf8QWUfFFxE3AgHDHiQc944CRWd5hctt1EK9RFjrpZk-QBaNVyQWZ3454Nb6yGPreYr4eTuWSf8w/s1600/all+done.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi66jGImF0M4wTcKdRpQjKl2g8pu-E55CdUPjyKq9ooy6aeQBSu3tviSGD2_sB0eoIUf8QWUfFFxE3AgHDHiQc944CRWd5hctt1EK9RFjrpZk-QBaNVyQWZ3454Nb6yGPreYr4eTuWSf8w/s320/all+done.JPG" width="240" /></a></div><div align="center" style="text-align: center;">All done!</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijrMpFcLx-npeKa9iLz7QyDPbufO3VUavLqFloUnbfGLbFoDSyVTOHDq5AbXgrUGzS9XUO2pXMMQz8Lm5C9F0NNw1czISkTA1lIYSdYhDG-8eFSOIxcRNEeR5-4OKB1a1kb2IAnG0EGKo/s1600/silly+sam.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijrMpFcLx-npeKa9iLz7QyDPbufO3VUavLqFloUnbfGLbFoDSyVTOHDq5AbXgrUGzS9XUO2pXMMQz8Lm5C9F0NNw1czISkTA1lIYSdYhDG-8eFSOIxcRNEeR5-4OKB1a1kb2IAnG0EGKo/s320/silly+sam.JPG" width="240" /></a></div><div style="text-align: center;">Sam, my photography assistant.</div><div class="separator" style="clear: both; text-align: center;"></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifuY0o9yaGA-dqN5ZHRT3AE9ilLfRDHJ0o04gqiZ4aLjDcdjucJ_jZpQEmIVFnnK-SsSuyECKdeB1Sg3dk57i3ts7gIBsJ9T96MfSVuiX8Ia0Cn9RlxA0AyA7nFU_VRrOPwAvzdbN3D0k/s1600/chocolate+eli.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifuY0o9yaGA-dqN5ZHRT3AE9ilLfRDHJ0o04gqiZ4aLjDcdjucJ_jZpQEmIVFnnK-SsSuyECKdeB1Sg3dk57i3ts7gIBsJ9T96MfSVuiX8Ia0Cn9RlxA0AyA7nFU_VRrOPwAvzdbN3D0k/s320/chocolate+eli.jpg" width="240" /></a></div><div style="text-align: center;">Elijah, who offered much instruction during our demonstration.</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGvgqF4cYklH5auECZU3ezCrVdK84cHvGYbcSKTxqRC-GqyOVqK1QKMUtwkQp38Yxhw93llIL9h_EIS-BFHSXFPP42BZ-0U7XdYKcS1WYe3eNJbSsCkl7enJVwoVVf3GZx9vrJjdBGDoc/s1600/bethany+school.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGvgqF4cYklH5auECZU3ezCrVdK84cHvGYbcSKTxqRC-GqyOVqK1QKMUtwkQp38Yxhw93llIL9h_EIS-BFHSXFPP42BZ-0U7XdYKcS1WYe3eNJbSsCkl7enJVwoVVf3GZx9vrJjdBGDoc/s320/bethany+school.JPG" width="240" /></a></div><div style="text-align: center;">And Bethany, chief editor. She told us which pictures NOT to include.</div><div align="center" style="text-align: center;"><br />
</div>jfrench2000http://www.blogger.com/profile/15852185474458526050noreply@blogger.com6tag:blogger.com,1999:blog-1996126913300339668.post-57019803816837795192011-02-07T14:51:00.000-08:002011-02-07T14:51:06.816-08:00Feeding Tube Awareness Week - Day 2<div style="text-align: center;">Today's topic for feeding tube awareness week is pictures before and after. </div> <div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggKzyg8XP1CbGgL18nML5ZfioFKBqFql1EoTrMRvG8Qtxpqz65qwfe6q8a5x5ZLpu30UdZmYcX4IIY4EeIITHa8EO_QWGqkSC4iCXDY7GUF6iTs62FmYLB0NfZz67XY7uqKvMGibL0RVs/s1600/Picture+013.jpg" imageanchor="1"><img border="0" h5="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggKzyg8XP1CbGgL18nML5ZfioFKBqFql1EoTrMRvG8Qtxpqz65qwfe6q8a5x5ZLpu30UdZmYcX4IIY4EeIITHa8EO_QWGqkSC4iCXDY7GUF6iTs62FmYLB0NfZz67XY7uqKvMGibL0RVs/s320/Picture+013.jpg" width="320" /></a></div> <div style="text-align: center;">Naomi was quite thin before her tubes, you could count her ribs. </div> <div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhk_xmx-L-lMUAhOMffJvanrx3HcB54haIOWUhvxeftfXF3TFEkJKNZhk7eyl0ioZAezUBh07fsbnIOeRGpvbiJ9ERLrNt2GQyj3er8VHygLXIrCwFNRuj2N9QSaPtBtJSDGvJ6WzxDEQE/s1600/P1020336.JPG" imageanchor="1"><img border="0" h5="true" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhk_xmx-L-lMUAhOMffJvanrx3HcB54haIOWUhvxeftfXF3TFEkJKNZhk7eyl0ioZAezUBh07fsbnIOeRGpvbiJ9ERLrNt2GQyj3er8VHygLXIrCwFNRuj2N9QSaPtBtJSDGvJ6WzxDEQE/s320/P1020336.JPG" width="240" /></a></div> <div style="text-align: justify;"><br />
</div><div style="text-align: center;">Now you've got to tickle her to find those ribs.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">If you want to see more, I created an album on <a href="http://www.facebook.com/album.php?aid=282010&id=618349762&l=ec2461049d">Facebook</a> that shows several before and after tube pictures. Perhaps one day we will be able to show an after picture of Naomi tube-free. We are hopeful for that day but realize there is a lot of work, mostly on Naomi's part to get there.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Today we answer the question... What is the most positive benefit your child has received because of tube feeding? Reduced stress and positive eating experiences. Before Naomi's feeding tube our lives revolved around her eating. We worked overtime to get as many high calorie foods into her as possible. We took away water (at doctor's suggestions) and only let her drink super high calorie formula. We put butter, oil, honey and sugar on everything and Naomi hated it. If she asked for a fruit or vegetable it came drowned in a high calorie dip. We were constantly coaxing her for one bite more. Now with the tube, we still want her to eat, but the pressure is off. She can learn and develop at her own rate and we have bought extra time to figure out why. Meal times can be fun again and I don't have to worry about making it super high calorie for her and somewhat nutritious for the rest of the family. The other major positive is energy. I never realized Naomi was low-energy until after she got her tube and suddenly had boundless energy. She loves to play and now has the energy to do it.</div>jfrench2000http://www.blogger.com/profile/15852185474458526050noreply@blogger.com1tag:blogger.com,1999:blog-1996126913300339668.post-80561881327541606482011-02-06T17:48:00.000-08:002011-02-06T17:48:50.989-08:00Feeding Tube Awareness Week - Day 1Many of you know that my fourth child, Naomi, has a feeding tube. This week is the first ever Feeding Tube Awareness week. We are very excited to be a part of this. Each day we will do something a little different to hopefully help people better understand feeding tubes and the children and adults who use them. Today we are launching our video about why some children have feeding tubes. Please watch and be sure to notice the cute little girl at 2:10, that's our Naomi.<br />
<div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/FtXf8hKNOmE?feature=player_embedded' frameborder='0'></iframe></div><br />
Today we also want to tell you why Naomi has a feeding tube. To be honest we don't fully understand that. Naomi cannot or will not eat enough food to grow. She has celiac disease that prior to diagnosis caused severe malnutrition. She also has GERD (gastroesophageal reflux) which can be very painful. She has enlarged tonsils and sleep apnea. But rarely do any of these stop a child from eating to the point of no growth, but that was the case with Naomi. Perhaps eating is painful or maybe there is no hunger cues, it's a bit of a mystery. Whether these issues or something we've yet to discover is why she doesn't eat, we are thankful for the feeding tube (or button as we call it here at home) to keep her alive. Naomi gets three "tubie snacks" a day, and then eats some orally. Occasionally she gets a fourth tube feeding or an overnight feeding when her eating is especially down or she's been ill.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqu_n8Lino0Tpmor62aqTxeBljGDkevWT_KLUOfvObbTcVUC96La5XgOhjaQ6qrczub4ySRzC57EdNTy1e12YapNEcnKX1sDS9Ykg7iVTnDhy_KQ9F-hBiRhLJ0MmEE8PIjMpKJuKMBJE/s1600/I+heart+a+tubie.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqu_n8Lino0Tpmor62aqTxeBljGDkevWT_KLUOfvObbTcVUC96La5XgOhjaQ6qrczub4ySRzC57EdNTy1e12YapNEcnKX1sDS9Ykg7iVTnDhy_KQ9F-hBiRhLJ0MmEE8PIjMpKJuKMBJE/s1600/I+heart+a+tubie.jpg" /></a></div>For this week, for those of you on Facebook, would you consider changing your profile picture to the one above? It would mean a lot to me, and eventually to Naomi too, though I'm not sure she gets it now. For those of you that are wondering, so what does that tube look like, Naomi offered to show it off for us.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYHuJKkR1am7sBMsrOiVGVpM4gkgswyQHZPSLuc6YdyRjgJhtER9_n2oUrggI3b6YYZcbWnx35-fDJyFTUVSB8vCQKz0qwU1fG-HBwyOVoOKnHuOickYTZ8mBZc9Cz0dD-XDFWgvwenLQ/s1600/Naomi+Button.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYHuJKkR1am7sBMsrOiVGVpM4gkgswyQHZPSLuc6YdyRjgJhtER9_n2oUrggI3b6YYZcbWnx35-fDJyFTUVSB8vCQKz0qwU1fG-HBwyOVoOKnHuOickYTZ8mBZc9Cz0dD-XDFWgvwenLQ/s320/Naomi+Button.JPG" width="240" /></a></div><br />
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And the best part about her feeding tube is that she can eat on the run. Here she is this afternoon playing with Bethany. The backpack holds her food and pump which delivers her food at a steady rate.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtspxEN7WV_00jIMV9QDNP1Gewr4zscJr-2eXhMiIuydHy7M1bZ86_WV1etlBAwQDEuAAnoXSDHaBUuo_X6MGsyCowjumHrJ8WTiqw8Ngz5wK3eBcoxqaDBe0IMtlIq5rbf1oHK-vCdcY/s1600/fairy+feeding.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtspxEN7WV_00jIMV9QDNP1Gewr4zscJr-2eXhMiIuydHy7M1bZ86_WV1etlBAwQDEuAAnoXSDHaBUuo_X6MGsyCowjumHrJ8WTiqw8Ngz5wK3eBcoxqaDBe0IMtlIq5rbf1oHK-vCdcY/s320/fairy+feeding.JPG" width="240" /></a></div><br />
And lastly we cannot forget Bethany. This is Feeding Tube Awareness Week but today was also Bethany's birthday party. Can't believe she's eight!<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNv9JsLCkYun_Je_KaQCsxb4c6KpuKoNcU0_L1JlzyHpUK29RONlhcrZwNwB-j5rUKVUc_LZ58mYhfYpJswOBbe7UzieBtLeIEhvIaaMiJRXGM06Ub20b40PDB1jfEOZfD0LAt1u5F5T8/s1600/P1020721.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNv9JsLCkYun_Je_KaQCsxb4c6KpuKoNcU0_L1JlzyHpUK29RONlhcrZwNwB-j5rUKVUc_LZ58mYhfYpJswOBbe7UzieBtLeIEhvIaaMiJRXGM06Ub20b40PDB1jfEOZfD0LAt1u5F5T8/s320/P1020721.JPG" width="320" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7_AjiqUJsIy8B4CWtUT526XQkGc071rCxRr8IYDaxStdRx0-Hj5iU7H4t7xow1qg-rn9Xi1zcOMktTMHYmg_8qwIbvDXtS_El511ZHJiyFVGyTxh1wr9wVV1v0dMXJmJOMcqdV5OYDG0/s1600/P1020679.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7_AjiqUJsIy8B4CWtUT526XQkGc071rCxRr8IYDaxStdRx0-Hj5iU7H4t7xow1qg-rn9Xi1zcOMktTMHYmg_8qwIbvDXtS_El511ZHJiyFVGyTxh1wr9wVV1v0dMXJmJOMcqdV5OYDG0/s320/P1020679.JPG" width="320" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEPKQpNfpL3PW_jQrQJXOLsm4Kx8JB6FdibN69_zk3DF_Hp2Jk3-JaEKkrZbstdvvgKoJ2VzfH3eYmZTFI8DFr3E-uK-s07huSrlcG7hExQzqsGhy0unStsWpNh3QiF1eHGiHAajCD7UY/s1600/P1020674.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEPKQpNfpL3PW_jQrQJXOLsm4Kx8JB6FdibN69_zk3DF_Hp2Jk3-JaEKkrZbstdvvgKoJ2VzfH3eYmZTFI8DFr3E-uK-s07huSrlcG7hExQzqsGhy0unStsWpNh3QiF1eHGiHAajCD7UY/s320/P1020674.JPG" width="320" /></a></div><br />
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And lastly those far flung friends and family would never forgive me for not posting a picture of the baby. So here's our monkey Mary with her monkey.<br />
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Oh and last but not least. I gave up on not using the kids real names. With five kiddos I just couldn't keep track, so for those of you reading my previous posts. Alpha=Sam Beta=Bethany Charlie=Elijah Delta=Naomi and Echo=Mary,jfrench2000http://www.blogger.com/profile/15852185474458526050noreply@blogger.com1tag:blogger.com,1999:blog-1996126913300339668.post-56503364445251466932010-11-27T22:55:00.000-08:002010-11-27T22:55:18.964-08:00Delta's History - Part 3 Finally Catching Up to the Present<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><br />
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<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJLXFBQnVqgv-kb9iVwAlXbdmNXfGatVwpJ45NOlnuRsMZIzAIc5pJiDW-d5SeOONifuV5GyEq41-kwSYQPK03yznZRcAUA-aWa9EX66dFAsWsNVXNCtF6Rkfa_MzQpwqy9Ma2WEmjHc8/s1600/P1010751.JPG" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a>In January of this year it was decided that Delta should have a swallow study. Perhaps that would explain why she wouldn't eat. The swallow study was done by two lovely occupational therapists and one agile radiologist. Delta had a hard time sitting still in the seat but was eager to comply with the therapists asking her to swallow different textures from a thin liquid to a solid. I was amazed at how well the radiologist moved around with his x-ray machine to get the pictures. It was determined that Delta had no functional problems swallowing but that it was quite obvious that she didn't like certain textures and she was highly distractable and that could make feeding a challenge. The Occupational Therapists recommended feeding therapy that started in early March at witch she got the diagnosis of Sensory Processing Disorder, basically the nerve impulses that she receives in her senses have trouble processing and in some cases she's over sensitive and perceives what one might feel is pleasant as painful or irritating.</div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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<tr><td class="tr-caption" style="text-align: center;">Shortly after having the ng tube placed.<br />
The arm splints are to keep her from removing it.</td></tr>
</tbody></table><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">On March 21, we dedicated Echo to the Lord in our church. We had put this off for a full year as we were struggling with our Faith. How could we dedicate a baby to God, when our prayers for our toddler seemed to fall of deaf ears? We finally realized that although we are Delta's parents, we are not in control. We cannot stop her from having pain or suffering in life and hard as it is to admit, God might not have plans to heal her. This didn't mean we were giving up, only that we were taking the role of co-pilot instead of pilot. </div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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<tr><td class="tr-caption" style="text-align: center;">At home with her ng tube and her <br />
feeding pump in the background.</td></tr>
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On March 22, Delta was admitted to the hospital for failure to thrive. We had held off as long as we could but it was apparent that she could not or would not eat enough on her own. She received an ng tube that afternoon and was not at all pleased. We were in the hospital for three days and then returned home. The ng tube allowed her to grow but did not make her happy. Delta had always vomited or refluxed but now it was a daily if not hourly occurrence. We had medical paraphernalia all over our house and simple things like joining Bravo's class for a walk at the seashore became a complicated exercise in timing, positioning and carrying enough stuff. Delta had a hard time tolerating her formula at very high flow rates which meant she spent 13 hours a day hooked up to her feeding pump. She also completely quit eating the day she got her ng tube. For the first several weeks with the tube, I doubt she ate more than 3 small bites of food per day.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"></div> <br />
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<tr><td class="tr-caption" style="text-align: center;">Shortly after g-tube surgery</td></tr>
</tbody></table>Delta continued with her feeding therapy but made very little progress after the ng tube was placed. She started accepting foods she normally would have thrown on the floor on her plate but very little went into her mouth. In April we had an evaluation at a local feeding clinic. They confirmed our decision to pull Delta's ng tube and get her a g-tube directly into her stomach and suggested that we also see an ENT and get a sleep study to rule out any of those issues. Also since our current OT was leaving her position in June we decided we would start feeding therapy at the clinic in June. In May Delta got her g-tube a direct port through her abdominal wall into her stomach. After an initial scare, the doctor's accidentally put two holes in her stomach so she had to be nothing by mouth or g-tube for 72 hours, she healed well. When they placed the g-tube they did another biopsy of her small intestine. In this biopsy they found a high amount of a type of peptide that is only seen in celiacs getting gluten or the severely malnourished. Since she had been getting her full nutrition from her tube for the last two months and all her vitamin levels were normal we new that malnourishment couldn't be the cause so her celiac disease was confirmed. We finally started treating her reflux after 2 1/2 years and she started on prevacid and Reglan. The prevacid was to help keep her stomach acid down and the Reglan was to help he not vomit and empty her stomach faster. I'm not sure exactly which it was but it worked. Delta hardly vomits now. After two months Delta was on vacation and her meds were forgotten for a few days and it was realized that she somehow didn't need them so now she has quit vomiting and is medication free. Since the g-tube placement her growth has been mostly steady. She goes to weekly feeding therapy with another little girl with celiac and since her 3rd birthday she has shown more interest in eating so we pulled back a little more on the tube feeding and currently her growth has stalled. So we are taking a short while to try and get her eating more and if that doesn't work we will have to increase the tube feeds again. It is a delicate balance to try to find the right place between giving little enough tube feeds to invite a little hunger and getting enough that she is properly nourished and can grow. Delta still hasn't seen an ENT but hopefully that will happen in the new year. She saw a pulmonologist and had a sleep study a few weeks ago and it was found that she does have sleep apnea. We go back to the pulmonologist in December to find the full results of the study. Delta is being tested for cystic fibrosis for the 4th time as an explanation for her poor growth, all her other tests have been insufficient quantities of sweat for an answer.</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"> </div><div style="text-align: left;"></div> <br />
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<tr><td class="tr-caption" style="text-align: center;">Blowing out the candles for her 3rd birthday.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Catching butterflies in the yard.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Hiking at the State Park</td></tr>
</tbody></table> <div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;">Delta keep us hopping for sure, but we wouldn't have it any other way. How does it affect the other kids you may ask. Well, for Alpha it simply brings out his amazing compassion and sensitive heart. Bravo gets a little jealous but is understanding most of the time. She had a particularly hard time when we had to miss her 1st grade play right after Delta's g-tube surgery. Thankfully a great friend videotaped it for us. Charlie struggles, he even asked for a button (what we call Delta's tube) like Delta's and Echo, she has never known any other life. She looks for her button and tubie at times and wonders why she can't find it but to hep feeding tube, syringes and pumps are just normal life. I guess now they are to all of us.</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
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<tr><td class="tr-caption" style="text-align: center;">Sleep Study</td></tr>
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<div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"></div><div align="left" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"></div> <table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcL6SXxjKlMpAwLMQTBOH_6w0SYQALeJUFEHJNvKd_H5E_xKkT2Ss_rLkORc5axIVHha__gb7x7urdwMChOzIh5bMJz4SYX3fBw4aUutEb3K-aiLATvP7JjwNqSt0zTNGIgWLnyLpJgS8/s1600/P1020338.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcL6SXxjKlMpAwLMQTBOH_6w0SYQALeJUFEHJNvKd_H5E_xKkT2Ss_rLkORc5axIVHha__gb7x7urdwMChOzIh5bMJz4SYX3fBw4aUutEb3K-aiLATvP7JjwNqSt0zTNGIgWLnyLpJgS8/s320/P1020338.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><div align="justify">Dancing with my nephew at my sister's wedding.</div></td></tr>
</tbody></table>jfrench2000http://www.blogger.com/profile/15852185474458526050noreply@blogger.com0tag:blogger.com,1999:blog-1996126913300339668.post-11475479948515552572010-11-22T13:41:00.000-08:002010-11-22T13:41:22.143-08:00Delta's History - Part 2<div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhI1nAgcBAQqyduv93o-u-CJikd4EnXup6ICvjhUxoPkVUyM7kXBXxrjF2ddoR1KCCNptnKntJDiEGoLC0IeyjQbWic-SWzNGlT022Svp-J22rEbDSAT90Ds28sLIzH5W3_x3R2_-X-lqg/s1600/DSCN0783.JPG" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhI1nAgcBAQqyduv93o-u-CJikd4EnXup6ICvjhUxoPkVUyM7kXBXxrjF2ddoR1KCCNptnKntJDiEGoLC0IeyjQbWic-SWzNGlT022Svp-J22rEbDSAT90Ds28sLIzH5W3_x3R2_-X-lqg/s320/DSCN0783.JPG" width="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6PjOhYKjsZS_JDOMLoaM0s8RNqZKPnr9-ULZbm7hED0aZy_QaqPaHLceJdGuSq0oVmnLcRAX8ah0OOK9hOEmrzcaI1ZaHziNi2aQadGI9G9b9S6ImQMoU3lKgnsAYr7hVbYaL2RIURts/s1600/DSCN0767.JPG" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6PjOhYKjsZS_JDOMLoaM0s8RNqZKPnr9-ULZbm7hED0aZy_QaqPaHLceJdGuSq0oVmnLcRAX8ah0OOK9hOEmrzcaI1ZaHziNi2aQadGI9G9b9S6ImQMoU3lKgnsAYr7hVbYaL2RIURts/s320/DSCN0767.JPG" width="320" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx0t9YiUszTp5jqmO8_EZR7_uKEXJOXQvh7E74c4PQEuCk2TaJ3pCXwy0-Ugy_vyTL-OL_YK-OSZRBJVtUqENLdz5sX_itTxC95uH4feP3n-EkihH9Rak7wvw5wnyM1ajudWvLPPjrcwo/s1600/DSCN0804.JPG" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx0t9YiUszTp5jqmO8_EZR7_uKEXJOXQvh7E74c4PQEuCk2TaJ3pCXwy0-Ugy_vyTL-OL_YK-OSZRBJVtUqENLdz5sX_itTxC95uH4feP3n-EkihH9Rak7wvw5wnyM1ajudWvLPPjrcwo/s320/DSCN0804.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Reading all her books before taking them to the library.</td></tr>
</tbody></table>I left you last right before Delta's first birthday. We celebrated Delta's first birthday with friends and family at my parents home. We had a great time although Delta often seemed overwhelmed by all the attention. She made a mess with her cake but didn't eat much and enjoyed opening presents. We had asked that everyone give Delta books to donate to the library rather than gifts as we had an abundance of toys and clothes already and Delta loved and still does love the library.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Shortly after her first birthday we changed pediatricians, not because we didn't like the one we had, but because we wanted one closer to home and because I really didn't like the office staff at our current pediatrician's office. Within the month we had well baby/well child visits for all four kids. The new pediatrician wanted to rule out causes for Deltas tininess as she was only 15 pounds. We ran blood tests and found out she was quite anemic and tested positive for celiac disease, an autoimmune disease that causes damage to the small intestine and malnourishment with all its complications when gluten is ingested. Alpha failed a vision test, Bravo failed a hearing test and were referred to the opthamologist and audiologist respectively and Charlie we discovered still had an undescended teste and had to see a urologist. Delta was referred to the gastroenterologist to look into the celiac. We saw the GI doctor in early October and she told us we needed to do a small intestine biopsy to confirm Delta's celiac disease and it couldn't be done until December. In the meantime we were to give her lots and lots of gluten to ensure that the test had good results as if there was not enough gluten in her system, the results would be negative whether she had celiac or not. So we began to give Delta crackers, bread, pancakes, cookies. Every time she turned around we were offering her more. In the meantime she became a very cranky, lethargic and antisocial baby. She started screaming when strangers talked to her at the store. She was rarely happy and hard to console. She often laid on our living room floor for hours and just cried, any attempt on my part to console her just made the crying worse. She started waking every hour or two at night and was simply put miserable. In mid December the day of her biopsy finally came and we got up extra early to be in San Francisco at 7 a.m. Delta had a really hard time coming out of the anesthesia but otherwise all went well. James and I decided to start Delta on a gluten free diet that day, as we didn't have anything to lose by trying it. Within days Delta's screaming stopped and we saw her smile again. She was still lethargic however. When we went back to the GI doctor she said her biopsy was inconclusive. They couldn't confirm the celiac but they couldn't say she definitely didn't have it. They recommended we test her again later. We felt differently. Untreated celiac disease leads to severe problems, when you have celiac and consume gluten your body cannot absorb the vitamins, minerals and calorie content of the food you eat so you literally begin to starve. If we waited a year and tested again unrepairable damage could have been done in that time. If we kept Delta gluten free there would be no way to test later. We had already seen improvements in Delta's behavior and we were willing to continue with the gluten free diet. We had absolutely nothing to lose. Interestingly her iron levels had gotten much worse despite supplementation. When we went back in January Delta had gained a pound in a month, something that she had never done before in her life and her iron levels were holding steady although still quite low. I also did a lot of research on celiac and found that biopsies were very unreliable in young children and that almost all kids with positive blood tests will eventually have a positive biopsy if not on a gluten free diet. One doctor from New Zealand even went so far to say it was child abuse to keep a child with a positive blood test on a gluten containing diet until they had biopsy proven intestinal damage. This confirmed our conviction to keep Delta gluten free.</div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpNHMpK_UPSq5t-JuXiCl3INfDRaa1AqMRc0tvIkPBLW-Rs1bp8liCVAjUgYya8rDdVEaQoV6aKOauqSZeEmHmbShQtkJ7kR_TOYDddb9ks1TeWHqRcw8R5UKzcYYz_aHrrdNpwmQk6tU/s1600/DSCN1362.JPG" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpNHMpK_UPSq5t-JuXiCl3INfDRaa1AqMRc0tvIkPBLW-Rs1bp8liCVAjUgYya8rDdVEaQoV6aKOauqSZeEmHmbShQtkJ7kR_TOYDddb9ks1TeWHqRcw8R5UKzcYYz_aHrrdNpwmQk6tU/s320/DSCN1362.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Enjoying some family time at Disneyland in April of 2009.<br />
Thank you Disney for your Armed Forces Salute <br />
that made this possible for us.</td></tr>
</tbody></table><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">We chugged along through 2009 with many small but significant events. Delta's energy and iron levels improved throughout the year. In February Charlie had surgery to lower his undescended teste. Alpha and Bravo had seen their vision and hearing specialists, Alpha needed reading glasses and Bravo just needed her ears cleaned out. In March Echo was born and that same week Delta started speech therapy. Her first day Echo was less than one week old. Delta continued to have ups and downs in her growth and her gastrointerologist started her on Pediasure. In June they switched her to Boost 1.5 for even more calories and too our shock we got a visit from Child Protective Services. They were there because they were concerned about Delta's weight. They opened a voluntary (meaning we agreed to it, but I'm not sure what not agreeing would have led to) six month investigation. The first weeks of this were awful for me. I really struggled with the thought that someone, somewhere thought I wasn't doing my job as a parent. In August Delta's GI said if she didn't gain a pound in the next month she would be admitted to the hospital for Failure to Thrive and would most likely be getting a feeding tube. We started her on periactin an antihistamine, that has a side effect of increasing the appetite. The first week on periactin was horrible, it also made Delta tired and grouchy and once again she was having screaming fits. One lasted three hours until she literally passed out on the kitchen floor from exhaustion. Thankfully these undesired effects only lasted for 4-5 days. Unfortunately periactin has to be cycled on and off to continue working so we went through this every 4 weeks.</div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2J-XuVTSzLUApuon2Quy63NABZzEdlVY121xrcV9yn_1rxDuU6UfixzVilAmd8aN_fmCJBcmwrzAQ_YCTG7K8o4FIMZUaxe7BjAIocar1tU45vOyXgbIJmK7I5xL5HNjGR2sZe9oIvSw/s1600/Naomi+2nd+bday.JPG" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2J-XuVTSzLUApuon2Quy63NABZzEdlVY121xrcV9yn_1rxDuU6UfixzVilAmd8aN_fmCJBcmwrzAQ_YCTG7K8o4FIMZUaxe7BjAIocar1tU45vOyXgbIJmK7I5xL5HNjGR2sZe9oIvSw/s320/Naomi+2nd+bday.JPG" width="231" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Delta's 2nd birthday was bittersweet as we were all quite certain at her next GI appointment, two weeks later, she would be admitted to the hospital. She did however graduate from speech therapy the month before. We celebrated at the park with a Mickey Mouse theme, Delta's favorite. When we went back to the GI, we were shocked to learn that Delta had not gained one pound but nearly two is just six short weeks. We sang, we danced, we praised God for a happy and getting healthy little girl, she was thriving and just barely on the growth charts. In December CPS finally closed their case and decided we were indeed doing all we could for Delta. Sadly in January the periactin quit working and Delta's weight gain came to a screeching halt. </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">I will continue with this year's journey in a post very soon.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Heidi</div></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"></div>jfrench2000http://www.blogger.com/profile/15852185474458526050noreply@blogger.com0tag:blogger.com,1999:blog-1996126913300339668.post-82344751080650966152010-10-31T23:13:00.000-07:002010-10-31T23:13:35.182-07:00Delta's History Part 1<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjViqPi7fv2eofeNQQzq0TMeX0qVzYhbBsZ0LnCBJnOfb1ruIjFcDt43egfELeiOzENjILKn4pCOcvd4A-frBmr-kY-CzglBA2eEYitfiFzJOgHa4RFrNuBowimVLKHnWcfDY0B7hwX7tc/s1600/P1010183.JPG" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" nx="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjViqPi7fv2eofeNQQzq0TMeX0qVzYhbBsZ0LnCBJnOfb1ruIjFcDt43egfELeiOzENjILKn4pCOcvd4A-frBmr-kY-CzglBA2eEYitfiFzJOgHa4RFrNuBowimVLKHnWcfDY0B7hwX7tc/s320/P1010183.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Just a few days old.</td></tr>
</tbody></table><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Delta was born in September of 2007 a full term healthy baby girl. She weighed in at 6 pound 14 ounces and was 19 inches long. She seemed perfect in every way. She had two beautiful dimples, something the doctor noticed in the delivery room and dark, thick eyelashes. She was truly a beautiful newborn. She was also a very easy going newborn, which is a requirement when you are the fourth child. </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"> <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTMO8ppOoP-b7thFJlOv18A7FB-lxmTSs4hhq35Af86thyphenhyphenOaqNNzfP8nnkhXl5TStREg4Yz4bWzRZzxV4fdxpT1T79dV9F1J82c1aDkcsILaXRDP_u6eWyoK8CWe-VQnxhhuNSB6TUph4/s1600/P1010006.JPG" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" nx="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTMO8ppOoP-b7thFJlOv18A7FB-lxmTSs4hhq35Af86thyphenhyphenOaqNNzfP8nnkhXl5TStREg4Yz4bWzRZzxV4fdxpT1T79dV9F1J82c1aDkcsILaXRDP_u6eWyoK8CWe-VQnxhhuNSB6TUph4/s320/P1010006.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My nephew, 2 months and Delta 4 months.<br />
My nephew was off the top of the growth charts.</td></tr>
</tbody></table> <div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">As an infant Delta's development was completely normal. She smiled in her first few weeks, laughed around 10 weeks and cooed right on time. She quickly learned to roll over and the delighted in getting everyone's attention. She was definitely on the small side but always continued growing right along the 25th percentile of the growth charts. At 3 months and again at 5 months she had RSV, a respiratory virus that is mild in most but particularly rough in infants. Both times she was quite ill and required antibiotics and inhaled and injected steroids to recover. This was when we first noticed she was funny about things in her mouth. Every time we tried to give her medicine by dropper she would vomit as soon as the dropper went in her mouth. The medical assistants at the pediatrician's office didn't believe me, they insisted that I was giving it to her wrong. I then brought her into the office and offered her to them to give her medicine. It was quickly realized that Delta wasn't going to get any medicine by mouth and the doctor ordered injections for her medications. Delta recovered both times and thankfully has never had the infection again since. </div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8AS5FcmZAkEaqDoZ5M1SSSdVWtq590XSf-ALjM7sWUjjhv5g8Iob80OebGXNsZqaP9Fajl5hAmczj1UhBEKKyYmhZoYsJU1s4ATueMq8UKJpjGDUq7V0GxsFFzHsTzgs4HPwcoXwcv_A/s1600/DSCN0040.JPG" imageanchor="1" style="clear: left; cssfloat: left; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" nx="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8AS5FcmZAkEaqDoZ5M1SSSdVWtq590XSf-ALjM7sWUjjhv5g8Iob80OebGXNsZqaP9Fajl5hAmczj1UhBEKKyYmhZoYsJU1s4ATueMq8UKJpjGDUq7V0GxsFFzHsTzgs4HPwcoXwcv_A/s320/DSCN0040.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">At about 8 months. </td></tr>
</tbody></table><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">At Delta's six month check up it was noticed that she had "fallen off" the growth charts for weight but she had been sick so no one thought much of it. We were just told to bring her back next month to weigh her again. At six months we also started introducing baby foods and cereals. Delta was very excited to eat but didn't seem to know what to do with it. We'd spoon the food into her happy smiling mouth and she would just sit there while most of it ran down her face. It takes babies awhile to learn to eat so we never though much of it. We also tried to introduce a cup at this time as she had never taken a bottle and I wanted an occasional break from her. With her being so little and not really eating much of the solid foods I felt as if I couldn't leave her for more than an hour or so. She was highly unimpressed with a cup so we quickly gave that up. At seven months and again at eight and nine months Delta was still underweight but she was following the curve of the growth chart, just below it so everyone was content. Around eight or nine months we decided to give Delta table food as the pureed food wasn't happening. She loved it! We were so excited to see her eat something besides breastmilk and whatever she accidentally swallowed of the purees. Delta continued to love the table foods and grow on her curve below the growth charts for the rest of her first year.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">To be continued.... Soon I hope.</div></div></div>jfrench2000http://www.blogger.com/profile/15852185474458526050noreply@blogger.com0