tag:blogger.com,1999:blog-23072756737173325112024-03-13T04:36:36.416-04:00Jenny ChickadeeWhen life gets complicated- simplify.JennyChickdeehttp://www.blogger.com/profile/02448368740284553397noreply@blogger.comBlogger97125tag:blogger.com,1999:blog-2307275673717332511.post-9855912580624398182018-01-24T11:21:00.001-05:002018-01-24T11:23:50.445-05:00Letter to Myself for 2018<div style="background-color: white; font-family: arial, helvetica, sans-serif; font-size: 10pt; text-align: justify;">
<span style="font-size: 10pt;">Dear Me,</span><br />
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<span style="font-size: 10pt;">Get ready to dance!</span><br />
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<span style="font-size: 10pt;">This is the year you will dance round the house. Holding it together with soft padded steps, while keeping up with the stomping of your 5 year old and the tumbling's of your weakened youngest. Try your best to side step with gentleness and patience, during the tantrums and melt downs. You've got this!</span></div>
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<span style="font-size: 10pt;"><span style="font-size: 10pt;">Tip toe lightly around the many puddles of puke and don't crack under pressure when the dietitian pressures you to keep your son's weight up. Try to leave your anxiety backstage as you struggle with his G-tube and the inevitable pneumonias. There will be hospital admissions, but remember you have a backup dancer who is amazing! Let him take front stage once in a while.</span><span style="font-size: 10pt;"> </span></span></div>
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<span style="font-size: 10pt;">Monkey wrenches will be thrown your way but you are light on your feet. Some you will avoid, others will hit you. Just remember that there is a choreographer, who knows the routine and will teach you the steps. Please take the time to learn the steps.</span></div>
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<span style="font-size: 10pt;">Slow dance in the kitchen with your husband. Hold each other and whisper "It's all going to be OK". Try to believe it.</span></div>
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<span style="font-size: 10pt;">Watch your 5 year old break dance and twirl round the room. Join in once in a while. Find joy in these simple moments that won't last forever. Remember that one day he might not want to dance with you, so do it while you can. </span></div>
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<span style="font-size: 10pt;">Keep hope and find encouragement in the slow steady rhythm your special one dances to. His dance is hard. So unfairly hard. Feel confident in your role. You are doing the best you can. </span></div>
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<span style="font-size: 10pt;">So remember to dance. Dance through the joy, the sorrow, the pain. One step at a time. </span></div>
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<span style="font-size: 10pt;">Love, Joy and Blessings,</span></div>
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<span style="font-size: 10pt;">Me</span></div>
JennyChickdeehttp://www.blogger.com/profile/02448368740284553397noreply@blogger.com0tag:blogger.com,1999:blog-2307275673717332511.post-72205498322890343502018-01-23T16:03:00.000-05:002018-01-23T16:03:54.590-05:00Same old... with a little new.Let's see...<br />
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Life has been pretty consistent around here. Gideon has had multiple cases of pneumonia since our last post. Only one required hospitalisation- for about 2 weeks in September? The rest we managed to deal with in house. This week he has an ear infection and is on antibiotics again. So sleep has been a precious commodity. <br />
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We have been using the feeding pump more. We have had less vomiting when the feeds are slower and he seems to tolerate larger amounts. We are still trying to introduce solids but the battle with oral sensitivity rages on. We have started paying for a private OT who is regarded as a sensory guru in our area and are hoping to make some progress this year.<br />
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On the positive side on things, for the first time since before he had teeth, he brought food (a tortilla chip counts as food right?) up to his mouth and nibbled. Sure he spat it out all over the place and kept wiping his mouth/tongue with his hand but I consider this a milestone in his sensory journey.<br />
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Later this week we will be meeting with the school in regards to Gideon starting kindergarten in the fall. We are not sure if we are going to hold him back a year. There are so many things to consider and it feels rather over whelming. All the accommodations that need to be made make my head spin.<br />
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Look out 2018... Here we come, one day at a time.</blockquote>
JennyChickdeehttp://www.blogger.com/profile/02448368740284553397noreply@blogger.com0tag:blogger.com,1999:blog-2307275673717332511.post-92212441604669983292017-03-23T11:10:00.001-04:002017-03-23T11:30:28.993-04:00Mantra for the Day<div class="separator" style="clear: both; text-align: center;">
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Can't seem to get this song off my mind - The perfect mantra for a sunny day and a little boy who just won't quit.</div>
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Gideon is on antibiotics again for an ear infection that is making his ear bleed. Day 6 of 10. Vomiting, blood stained sheets and mild fevers don't seem to hamper his mood.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKWVYCdEZSw6qNwuw5_9k1w3NZlmiFxtg3aAvojyEG8WunCJx31sBg6CDK3f7F1xGfl0FCkcQwCub6bpkJtT48kWQyu8BiYRDJY3RwvYnrQjh151JbRQrKKZ-qlLvmkEoqscbNzynd5zUA/s1600/IMG_20170323_112036.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKWVYCdEZSw6qNwuw5_9k1w3NZlmiFxtg3aAvojyEG8WunCJx31sBg6CDK3f7F1xGfl0FCkcQwCub6bpkJtT48kWQyu8BiYRDJY3RwvYnrQjh151JbRQrKKZ-qlLvmkEoqscbNzynd5zUA/s320/IMG_20170323_112036.jpg" width="320" /> </a> </div>
JennyChickdeehttp://www.blogger.com/profile/02448368740284553397noreply@blogger.com0tag:blogger.com,1999:blog-2307275673717332511.post-5690882273728380702017-03-02T14:37:00.000-05:002017-03-02T14:40:57.378-05:00Stomach Juice Morning Jolt<div class="separator" style="clear: both; text-align: left;">
So after getting Alex onto the bus this morning, Gideon accidentally pulled out his G-tube. Sometimes he "plays" with his tube - sort of flicking it with his hand, while we do bum changes. This morning, it came right out, fully inflated. Oozing stomach juices prior to my morning coffee leave me feeling a little uneasy. Ok maybe freaked out is a better turn of phrase. Yes I may have been just a touch frantic. We have had the G-tube since June, so his stoma is pretty well established, but I remember someone saying that they can close up on you pretty quickly. I've only observed the nurses changing it out once... so I've never done it myself before. I was trying hard to flash back to our clinic a month ago. So my first instinct was to reach for a temporary tube to stick in the stoma and then bring him to the ER were they had experience putting these things in. I stuck the tubing in, taped it all down with some gauze and then realized that his stomach contents were coming out the other end of the temporary tube. Plan B- I then tried to find a syringe to deflate the balloon portion of his old MicKey tube that had come out but for some reason, I couldn't get my regular syringes to fit... maybe I was flustered? I opened my spare MicKey box to get the syringe that comes in the kit, deflated the balloon, inserted the MicKey into the stoma, but the water wouldn't stay in the balloon, it kept pushing back into the syringe. Then, when I tried to pull my syringe out, a part of the MicKey was stuck to the end of the syringe. Really?</div>
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Long story short- It took just over 2 hours in an ER waiting room (Good thing I had something in his stoma!) and 5 minutes to put my spare MicKey in. Now I have to order a new replacement (CHA$$$CHING$$$), after just putting the last one in a month ago. </div>
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Oh well. At least my post trauma Timmy's Roll Up the Rim was a winner. YEAH Free coffee!!!</div>
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<span style="color: blue;">Does loosing a G-tube make you anxious even though it's not "technically" a severe emergency? Does it get less stressful with more experience?</span></div>
JennyChickdeehttp://www.blogger.com/profile/02448368740284553397noreply@blogger.com0tag:blogger.com,1999:blog-2307275673717332511.post-42505407982928773142017-02-25T09:57:00.000-05:002017-02-25T09:57:00.947-05:00Toy Round Up<div class="separator" style="clear: both; text-align: center;">
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It's been a while since I shared some of the toys Gideon has been playing with. He is over 2 years old now and he has been developing in so many areas!</div>
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<span style="font-size: large;">1. Melissa & Doug Reusable Stickers</span> - Gideon has been working very hard on his vision and memory skills and these reusable stickers have been great for this. I've used these on white boards and on the fridge. I pick out 4 - 8 animals and set them up in two rows. I have him point to the animals while I name them. Once he knows where everything is, I'll ask him to find a certain animal. If it's no longer a challenge, I might mix the animals up or introduce a new one. This is great practice for both his eyes (a sheep is much different looking than a crocodile) and his memory skills. He has even started finding animals without me naming them first. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBv-7fCN19SVAUAxey_rnA9SdqKs6UzvCanXMWH-uUBUcmSr1kTK7gK0tJSEqFOtbNgdlPzqZK2OYqx3muQIamP3tsznEWOWuqu2Qj8iUJjw8kTLhXVwiEE4RE1cF3_S4xtVDWqxeFwJPt/s1600/IMG_20170225_084512.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBv-7fCN19SVAUAxey_rnA9SdqKs6UzvCanXMWH-uUBUcmSr1kTK7gK0tJSEqFOtbNgdlPzqZK2OYqx3muQIamP3tsznEWOWuqu2Qj8iUJjw8kTLhXVwiEE4RE1cF3_S4xtVDWqxeFwJPt/s640/IMG_20170225_084512.jpg" /> </a> </div>
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<span style="font-size: large;">2. Ever Earth Ramp Racer</span> - This little toy has kept Gideon far more occupied than I expected. The little cars are easy for his hands to manipulate and they make a really fun "click clack click clack" when they fall onto the next level of the ramp. Design wise, there is one little flaw... the cars can fit sideways on the ramp. If the wheels aren't pointed the right way, the car will just sit there. This will result in Gideon becoming very sad! I've tried to make it into an opportunity for him to sign the word "help". I've also tired to turn it into a problem solving activity... but he just seems to get frustrated. The nice thing about the design is that there is a stopper at the bottom on the ramp and the cars don't go flying across the room. The cars are predictable and it's easy for Gideon to find them. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ_aa4Y3oSYjTWpyUUIkEaW5B6cKY9ErRzUJeqLknF6Xs-CYeY8AC_K1YLASUzB54MKmLtEJ6YksNJZly9MpDmT6bZhvlc-117Y8JJK-FzZvzIpX_1Ipa1pfCXgXYHBVGfHFaypvSev_6N/s1600/IMG_20170225_084219.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ_aa4Y3oSYjTWpyUUIkEaW5B6cKY9ErRzUJeqLknF6Xs-CYeY8AC_K1YLASUzB54MKmLtEJ6YksNJZly9MpDmT6bZhvlc-117Y8JJK-FzZvzIpX_1Ipa1pfCXgXYHBVGfHFaypvSev_6N/s640/IMG_20170225_084219.jpg" /> </a> </div>
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<span style="font-size: large;">3. Washable Crayola Crayons - </span>Gideon has found his inner artist. He LOVES to draw... ON EVERYTHING ; the floor, under chairs, his toys. (Which I try and discourage but he gets so into his pictures that they seem to spread everywhere) These washable crayons are great. He seems to want to fill in all the white space :)</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4bT4Fs_gY1BscRzHdvTbawmpF9Ihuyd0vJ_ulWpP0SwuUdSYPzT9Kw-rvm9HmqszhEzJ1fpt3k5okqfQoZS-5jvGyYkavdAvsfQEIXVc8PTq967S-5mSkAquZv-GyZZ5kjJyXmF0FP7z7/s1600/IMG_20170225_084625.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4bT4Fs_gY1BscRzHdvTbawmpF9Ihuyd0vJ_ulWpP0SwuUdSYPzT9Kw-rvm9HmqszhEzJ1fpt3k5okqfQoZS-5jvGyYkavdAvsfQEIXVc8PTq967S-5mSkAquZv-GyZZ5kjJyXmF0FP7z7/s640/IMG_20170225_084625.jpg" /> </a> </div>
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<span style="font-size: large;">4. Melody the Musical Turtle by Leap Frog</span>- This thoughtful gift has been a huge hit with Gideon. The buttons light up and there is all kinds of music. </div>
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There are three settings: </div>
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<li>1. Press the buttons that light up to play a song. The buttons are lit up in sequence, and you have to guess which song you are playing. </li>
<li>2.Find the colours/numbers. You have to find the colour or number on the turtle. If you wait, the answer will light up for you to press.</li>
<li>3. Memory Game- You have to remember the sequence of buttons you have pressed.</li>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkfLVvAp2vnGXwran7AGfjQsV0Gi7oGWosFdRKFsg8-WMRtB8mzL-78_Jt5Z2ilg203xdu7nk2G4APt27FdHtf9LAIf_xZlIhZvvtKzdqcT4zR2xQC6nfogzhqV-RMzCo0Vh_GcrpQqrIM/s1600/IMG_20170225_083533.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkfLVvAp2vnGXwran7AGfjQsV0Gi7oGWosFdRKFsg8-WMRtB8mzL-78_Jt5Z2ilg203xdu7nk2G4APt27FdHtf9LAIf_xZlIhZvvtKzdqcT4zR2xQC6nfogzhqV-RMzCo0Vh_GcrpQqrIM/s640/IMG_20170225_083533.jpg" /> </a></div>
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<span style="font-size: large;">5. Drums and xylophone </span>- Gideon loves banging things to hear what they sound like. We were given a small drum and a xylophone for Christmas (sorry no pictures) and he loves them.</div>
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To end it off, here is a special treat. Gideon is not the only artist in the family, Alexander painted this amazing picture of a porcupine. (He drew the picture and I labeled it) Hope you enjoy!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizw634w3qOXVRRbcyK3JM4x4dbZCuaR85HVmjPc2OQryyMpt1W2CzS9m8B5vY2W1hy3kVKiOTc4qs29apQN_h2kQPGoMrMFE3V5sejWgYxUJ72_cKCbkjS6JVIycdWwQYkTFEPUUyS34kr/s1600/IMG_20170225_085056_panorama.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizw634w3qOXVRRbcyK3JM4x4dbZCuaR85HVmjPc2OQryyMpt1W2CzS9m8B5vY2W1hy3kVKiOTc4qs29apQN_h2kQPGoMrMFE3V5sejWgYxUJ72_cKCbkjS6JVIycdWwQYkTFEPUUyS34kr/s640/IMG_20170225_085056_panorama.jpg" /></a></div>
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JennyChickdeehttp://www.blogger.com/profile/02448368740284553397noreply@blogger.com0tag:blogger.com,1999:blog-2307275673717332511.post-51691112406657344782017-02-24T11:48:00.000-05:002017-02-24T11:48:00.915-05:00Deja vu- The Journey of Finding Yourself - Again? We are all familiar with those classic coming to age stories. Teenagers go on a journey and "find themselves" though a series of misadventures. These misadventures help define who they will become and, by the end, the characters have obtained a self identity and a purpose or direction. No longer will they wonder aimlessly through life, they have gain enough experience to navigate this world, confident in their steps. <br />
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Classic example- Stand By Me 1986<br />
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I thought I had finished my journey, that I'd already paid my dues. I had my coming of age story played out during my late teens/early twenties and I was confident in who I was, what I believed and in which direction I was headed.</div>
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Well educated, happily married, career focused and a child to love.</div>
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Then life throws you for a loop.</div>
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After our second son was born, my self identity drastically changed. Yes I had identified as being a mom already and it was a large part of who I was, but it wasn't the only part. </div>
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The erosion started slowly. </div>
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I stopped hanging out with friends. Gideon needed me 24/7. He wouldn't eat or calm for anyone else. We had to cancel get together due to illnesses and we didn't take day trips on the weekend anymore. My leisure activities dwindled as I was left with less free time for myself. Gideon had sensory issues and was not able to tolerate going outside for more than a couple of minutes. He would gag/puke with a breeze or if the air was too cold. I was reduced to tv watching and googling medical terms. The appointments and hospital admissions were exhaustive and it soon became clear that I would have to put my career on hold to make sure Gideon would have the best start in life. </div>
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After 2 years of this, my identity has been almost completely consumed/defined as a mother, a caretaker, a homemaker, and a struggling wife. And the funny thing is, it sometimes feels like I'm failing in these, as restricted and limiting a definition as they are. The laundry is always backlogged, I feel like Alexander is getting shafted when it comes to attention, and I feel under pressure to get all of Gideon's goals meet, which seem impossible when he has so many: Feeding goals, speech goals, physio goals, sensory goals, vision goals, social goals on top of medical demands. I'm not saying I don't enjoy being a mom. I love my children immensely! I wouldn't give up my children for the world. The thing is though, EVERYTHING in my world revolves around my children, and I don't think that is balanced or healthy. </div>
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Now I find myself taking a breath. </div>
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I want to identify myself as a woman, a wife, a friend, a family member, a creative mind, a traveler, a musician, an advocate, a person who makes amazing homecooked meals. I want to be someone who dances to music and smiles more often. I want to be hygienic and hairless. I want to feel whole and spiritual.</div>
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The second coming of age journey needs to begin. </div>
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<span style="color: blue;">Did you feel like your self identity slipped after you had a child with special needs?</span></div>
JennyChickdeehttp://www.blogger.com/profile/02448368740284553397noreply@blogger.com0tag:blogger.com,1999:blog-2307275673717332511.post-90093712566050133412017-02-20T12:08:00.001-05:002017-02-20T12:08:28.076-05:00Thoughtful Christmas GiftMy sister gave me this very thoughtful Christmas gift and I thought I'd share it. <br />
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This necklace is from <a href="http://leighluna.com/collections/braille" target="_blank">Leigh Luna Jewelry</a> and I love it! They do some beautiful work over there as well as some custom designs. This one has the names John, Alex and Gideon on it in braille. Well... reverse braille? They punch the dots instead of emboss them. I'm head over heels and not ashamed to admit that I teared up a bit when I opened the gift. <br />
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Since having Gideon come into our lives, I feel like my identity has been expanded as an advocate for children with special needs and for families with children who have complex care needs. I have this desire to be strong and to let my voice be heard... but I also feel burnt out and tired. I know that wearing this jewelry is not the same as burning down the gates of the Parliament, but for me this necklace is both beautiful and symbolic. It's a small way of feeling like I am letting other know that there is diversity in our families and if a stranger asks me about it, I'll gladly get on my soapbox. </div>
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<span style="color: blue;">How are you advocating for the under acknowledged in your life? </span> </div>
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JennyChickdeehttp://www.blogger.com/profile/02448368740284553397noreply@blogger.com0tag:blogger.com,1999:blog-2307275673717332511.post-9205757100324046542017-02-15T00:20:00.000-05:002017-02-15T00:20:11.741-05:00Valentine's Day Shark Attack<div class="separator" style="clear: both; text-align: center;">
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So... just when I thought things were steady, I went to pick up Gideon from Daycare and he was fevered and not quite himself. (Fussy, then lethargic, then not very responsive. His eyes were not really connecting with me. He was off!) Normally I'd wait it out a couple of days and see if things would resolve but because we were having the MRI under anesthetic tomorrow (and because we were just under anesthetic last week, which upped our chances of a lung infection), I thought maybe I should just check it out and make sure everything could still be a go. After giving him some Tylenol, I headed off to the local ER to see if I could have a chat with the on call Pediatrician. The ER doctor was really good and remembered us from a previous visit. He ordered labs and a chest x-ray, even though Gideon looked amazing. The Tylenol had made his fever disappear and he was his old self again- smiling, playing, looking like a very healthy boy. The Pediatrician on call came in before our results and he took one look at Gideon and said he should go home, and that he probably just had a cold. Then the radiologist actually came to see us personally. He told us that he thought Gideon had a left lung pneumonia again (Probably due to aspiration of some sort) and that his white count was up. I think he has read most of Gideon's chest x-rays over the past two years and he seemed very sympathetic and even mentioned how hard it can be when you have a special needs child plus another little one to take care of. Very kind! Once the ER doctor found out, he was kind enough to cancel our MRI appointment for us (Pneumonia and anesthetic do not really mix) and prescribed a well thought out antibiotic that seems appropriate considering Gideon's history of multiple pneumonias. Now we are home! Fingers crossed that the medicine does what it's suppose to do and we don't have to go back!<br />
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I guess it's a good thing I listened to my gut. If I hadn't gone in to see someone, Gideon would have gone under Anesthetic with a pneumonia and he could have had a much worse outcome - possibly even an admission. <br />
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CAUTION - GRAPHIC MATERIAL (Someone gets eaten and there is blood)</div>
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Please enjoy this depiction of pneumonia devouring it's prey. </div>
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<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/pmLP0QQPqFw/0.jpg" src="https://www.youtube.com/embed/pmLP0QQPqFw?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
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Who knew pneumonia had such sharp pointy teeth?</div>
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<br />JennyChickdeehttp://www.blogger.com/profile/02448368740284553397noreply@blogger.com0tag:blogger.com,1999:blog-2307275673717332511.post-655422137752275652017-02-14T14:18:00.002-05:002017-02-14T14:18:11.202-05:00Praise for the G-tube and Other News from the Front LinesSo life has been moving along...<br />
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1. I finished installing hardwood floors and we have now moved upstairs to the main floor of our new house. I'm pretty happy with the results considering I've never done flooring before. Extra Brag Rights - These floors were unfinished and thin (2 1/2 inch)- meaning I had to install, drum sand and seal the flooring! (+10 Bonus points for installing the new dishwasher.) My DIY skills have just leveled up!<br />
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2. Gideon has been doing fairly well over the last 6 months. Yes we have had vomiting. Actually lots of vomiting. Vomiting that has sprayed walls and stained carpets. Vomiting that has brought us to tears. Vomiting that has.... uh... you get the picture. BUT- even though we have had these intermittent episodes, we have avoided hospital admissions. Why? Because we have been able to keep him hydrated through his G-Tube. That and his puffers have really been helping to keep his O2 levels up. <br />
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The g-tube thing though, really is the hero. <br />
All that medication we had to give orally that made Gideon gag and/or vomit? *POOF*- G-Tube magic makes it vanish before your eyes- straight to his gut! What's this? Gideon has decided he's not wanting to finish his bottle and mommy's under pressure to get his intake up? *POW* G-tube to the rescue! Dehydration knocking on the door? *REJECTION* Our G-tube doesn't welcome solicitation! <br />
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Alright... so maybe not ALL our problems have been solved, but we've avoided hospitalization and that is a huge blessing. <br />
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3. Gideon is bum scooting like crazy and we have started trialing a new walker called the "<a href="http://www.rifton.com/products/gait-trainers/pacer-gait-trainers-k509" target="_blank">Mini Pacer</a>". Looks like with the accessories we need, it might be around $1500 before the <a href="https://www.ontario.ca/page/assistive-devices-program" target="_blank">Assertive Devices Program</a>- which should cover about 75% of it. So far this walker has received mixed reviews from him.<br />
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4. Gideon has not really been gaining the weight or muscle mass we would have hope for. Most little ones who are given a g-tube will see a lot of catch-up weight put on after it. Gideon has been really really struggling in this area. He seems to catch a lot of bugs and now he's burning more calories with all the bum scooting, but his stomach only seems to hold so much. We haven't really been able to increase his intake without him vomiting. <br />
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5. There have been many gains- mostly due to Gideon not being admitted to the hospital monthly but also due to his eyesight improving marginally. He now wears bifocals and is identifying pictures in books. He has been learning his shapes, colours and animals. His favourite thing to do, after tickling people, is to draw... on everything. Washable crayons- you are my friends! He enjoys tactile books and has even been placing his fingers on the braille. Who knows? Maybe one day he will read. <br />
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6. Language Skills - Gideon has been slow to make progress in this area. I wonder if there are any studies that suggest feeding delays/oral sensory aversions can effect vocalizations? The tongue is a muscle and I'm sure it is strengthened by oral feedings that might influence dexterity, right? Or maybe there is a coordination issue happening? Anyway, Gideon has been vocalizing "Hi", "Momomom" "Dadda" and "Aaaaa"(for Alex). When I ask what a cow says, he reply's- "AaMmmm" I've also heard "Kitty" when we've talked about a cat. I also think he's trying to say tickle- "tatatata". He has also attempted to sing Old McDonald- "Aaa Eee Aaa Eee O". His sign language has been trucking a long too. He has attempted to combine two signs "Ball please" when we are playing ball and he will bum scoot to me , lift his arms up and sign milk -"Up milk" . I've also seen the "more" sign combined with different things. Steady onward little snail, steady onward.<br />
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So that's about it, other than some routine tests- an MRI of the head tomorrow under sedation, some lab work and a spinal xray- to check for the off chance of scoliosis.<br />
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Steady onward. JennyChickdeehttp://www.blogger.com/profile/02448368740284553397noreply@blogger.com0tag:blogger.com,1999:blog-2307275673717332511.post-11778895829687028532016-10-11T14:52:00.001-04:002016-10-11T14:57:33.940-04:00Ninja Moves <div class="separator" style="clear: both; text-align: center;">
Nothing like a little Ninja Action to boost your mood!</div>
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Now I have a craving for sushi...</div>
JennyChickdeehttp://www.blogger.com/profile/02448368740284553397noreply@blogger.com0tag:blogger.com,1999:blog-2307275673717332511.post-87885481123322400842016-10-06T13:57:00.000-04:002016-10-06T13:59:49.503-04:00Show Me a Sign!Gideon is over 2 years old now but still not speaking. He babbles sometimes and will cry when upset but has not really been able to communicate with us using words. His smiles tell me he's happy, his squeezes, that he loves me. When he pushes something away, I know he's really not in the mood. Occasionally he will reach for something just out of reach that interests him and "complain" for help. <br />
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I expected some language delays because of his mild hearing loss, but there should be more emerging than what is accounted for. <br />
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Our speech pathologist suggested using sign language.<br />
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Surprisingly he has been picking up some words. It's mostly when we say the word that he will sign it... he's not really instigating them. So far ball, more and milk are the most consistent. <br />
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These are the words we are working on:<br />
Ball<br />
Sleep<br />
Eat<br />
More<br />
Book<br />
Dinosaur<br />
Car<br />
Tower <br />
Milk<br />
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Signing with Gideon is tricky. Because of his visual impairment, I'm sure that when I model, he just sees my blurry hands moving. Trying to figure our what the fingers are doing must be hard. I try to do hand over hand with him. Sometimes he lets me. His signs are a little different from standard ASL right now, but I know what he's trying to sign. <br />
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He likes the word sleep. (<a href="https://www.signingsavvy.com/sign/sleep" target="_blank">Click for Demo</a>)<br />
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He laughed when I first brushed my hand across his face and he then tried it. He seemed to pick up on that one really quickly.<br />
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The other morning I was feeding Gideon his bottle while Alex was trying to eat his breakfast. Gideon was signing milk (<a href="https://www.signingsavvy.com/sign/MILK/627/1" target="_blank">Click for Demo</a>) while he was drinking. I then told Alex, who was trying to escape the breakfast table, that he needed to drink more milk before he could play. Gideon then signed "more milk".<br />
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It made me smile. I told Alex that even his brother thought he had to drink more milk :)<br />
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I'd love to know what signs other parents find most helpful with there kids. I feel a little lost in this new language I'm learning. I really hope Gideon can catch on and start to express himself. Fingers crossed! JennyChickdeehttp://www.blogger.com/profile/02448368740284553397noreply@blogger.com0tag:blogger.com,1999:blog-2307275673717332511.post-81896227736236287912016-09-15T10:22:00.001-04:002016-09-15T10:22:38.937-04:00Playtime<div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPGShMyFhI_zpxzmcObxWAl_rAtDPpSfkvOdR8x0HOxN0vOUc9XqGm8PdYm-3eVfjOdp4ZmNX-54lHU-l9BCRYpmtjgAFY8SR_X5dmiG8Hvp8tNgnxSeMef8oBfslwnX21iqsvlkHnTO07/s1600/IMG_20160915_101831.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPGShMyFhI_zpxzmcObxWAl_rAtDPpSfkvOdR8x0HOxN0vOUc9XqGm8PdYm-3eVfjOdp4ZmNX-54lHU-l9BCRYpmtjgAFY8SR_X5dmiG8Hvp8tNgnxSeMef8oBfslwnX21iqsvlkHnTO07/s640/IMG_20160915_101831.jpg"> </a> </div>JennyChickdeehttp://www.blogger.com/profile/02448368740284553397noreply@blogger.com0tag:blogger.com,1999:blog-2307275673717332511.post-15367500164783446222016-09-02T10:44:00.001-04:002016-09-02T14:16:59.231-04:00New and Old- Same Plot Different ChildIt's been hard for me to write lately, for a number of reasons- some being mere practicalities, pure business. The harder thing to admit is the mixed emotional state similar to paralysis that being overwhelmed can lead to. These past two months have had such a contrast of highs and lows.<br />
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We moved to a new house in July. We are now living much closer to a hospital with a pediatric team and John is much closer to work. This has meant less commuting time for him and I even get to see him in the middle of the day when he comes home for lunch. The house we moved into is a bungalow on a very quiet street- perfect for Gideon. The only issue was that there was carpet all throughout the main floor. With Gideon's throwing up issues (vomit on carpet = ewwwww gross) and his mobility issues (walkers and carpet don't mix all that well), we decided to rip out the carpet and put down hardwood.... ourselves. And since we were redoing the floors, we thought we might as well take out the walls around the kitchen. We hired a contractor for that part. Unfortunately the contractor found aluminum wiring in our house. This resulted in some extensive electrical work and sealed the "do it ourselves" flooring to stay on budget. <br />
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Then a very sad thing happened. <br />
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Our dog Sprocket bit one of the contractors when he came downstairs while I was with the boys. She bit him on his heal and drew blood. I'm sure she was just being protective and that she was unsettled from all the banging and noise from upstairs. She was also still a little off because of the move to the new house. My nerves were a wreck. The contractors were very kind about it all. Because Gideon has so many different workers coming and going from the house, we made the very hard decision to give her up. We couldn't risk something like this happening again. She was adopted very quickly but that didn't make my heart feel any less broken. I had Sprocket for over 9 years. She was a wonderful companion and I still feel sad and miss her.<br />
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Gideon has been doing fairly well. So far the G-tube has been helping to keep him hydrated during his more intense vomiting stretches and we have avoided hospitalizations in both July and August. His fight with solids has still been a challenge. After his June admission, he refused to eat anything solid and would push the spoon away. The past two weeks have seen some progress. He has opened his moth for me a couple of times and he has been holding onto his spoon instead of just throwing it away. Gideon is also able to sit unassisted now.<br />
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Alexander, on the other hand, has not had such an easy go. <br />
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About three weeks ago, after dinner, Alexander suddenly vomited and went unresponsive. His eyes were open, he had a shallow breath and he was limp. I was sure he had a seizure. We called 911 and an ambulance came. My mom rushed over to take care of Gideon, while I went in the ambulance with Alex and John followed in the car. I kept calling Alexander's name. I tried to pull him out of it. There was nothing for me to do. I was holding it fairly together, until the ambulance attendant checked his pupils- and they did not respond. No movement. No dilation. There was nothing. That's when the panic really hit me. <br />
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The ambulance rushed through the city, lights and sirens No fever. Sugar levels were normal. What was going on? It felt like the blood was draining from my head and sitting in my stomach. We arrived at the hospital and he was still unresponsive. For 20 minutes he had been in this state. <br />
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And then, out of the air, he cried. <br />
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He screamed. <br />
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He yelled. <br />
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No words. No proper responses. It didn't feel like we were in the clear. Every so often he would drift. Like he was lost- gone to some other place inside his head. I'd call his name a couple of times and he would start to scream again. This lasted for a good 45 minutes. Then came the gibberish and single words repeated. Like a broken record, repeated rhythmically, mechanically. <br />
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Slowly the words were less rhythmic and more natural. Not as fluent as he normally is, but the words came and I felt more at ease. Still we had no answers. No reason. No cause. The lab work was normal. The xray was normal. The doctor had no explanation so he sent us home. <br />
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That night, Alexander vomited. It was so late and we were so tired. We cleaned things up and he slept in the bed with me while John slept on the couch. The next night, he vomited again while he was sleeping. A week later, he vomited again so I brought him in to the ER at 3 in the morning. I was anxious. Is the vomiting caused by the seizure? Why is he fine during the day? Why is he not complaining of feeling sick? No fever. Nothing in the lab work. "This is not something we will solve at 3:30am in the ER" as the doctor told me. After the forth vomit during his sleep, I made an appointment with the family doctor to get an EEG expedited. He had a sleep deprived EEG on Monday. Tuesday, he woke up in the night vomiting again.<br />
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Can a virus last 3 weeks? We haven't gotten any results yet from the EEG and I'm praying this is all just a virus gone wrong. <br />
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Anyway... we are all going to go to a Teddy bear picnic today and it's time to pack up the basket and blanket. Keep pressing on. Just keep swimming. Break through the paralysis. <br />
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Try and bring some normality to these small little ones. JennyChickdeehttp://www.blogger.com/profile/02448368740284553397noreply@blogger.com0tag:blogger.com,1999:blog-2307275673717332511.post-12651078574787792182016-06-27T11:30:00.000-04:002016-06-28T07:54:49.605-04:00Public G-TubingThis weekend I fed Gideon at a small house warming party consisting of mostly strangers in their mid twenties to early forties. This was the first time I used his G tube outside of our home. <br />
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We were in a fairly confined outdoor space, a small patio, so it wasn't exactly discrete. I also didn't feel like I should isolate Gideon. Everyone else was snacking and drinking so why should we go inside to eat? For some reason, internally it felt like the old breast feeding debate reinvented. Should I be concerned about making other people uncomfortable? How would I feel if people stared? <br />
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I decided that all of it didn't matter. I casually lifted his shirt, while distracting him with a book, and hooked him up to his extension tube. I sucked up his formula in a syringe and went at it. I had tried feeding Gideon orally, as much as I could, but it was hot and we were in a strange setting, so he was just not really into it. I had to push more than I normally do into him via the tube. It seemed to take forever.<br />
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Yes, some people looked uncomfortable, while others looked with wide eyes before turning to conversation with others. Some had a sad look of pity in their eyes, others started up a conversation with inquiries into our situation. Yes it came across a little awkward as I tried to talk to others, casually inserting comments into their conversations every so often, as I held a syringe and tubing in my hands. I didn't care. I was owning it. I was overcoming social taboos and claiming public G-tubing as normal.<br />
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I've never seen anyone g-tubing in public. I'm sure parents do this all the time. They really are more common than you might think; our surgeon said they do 2-3 G-tube surgeries every week. <br />
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I'm not sure what advice to give to others who come across someone G-tube feeding in public. I think all the reactions we received were quite normal. What I wouldn't do is intentionally make anyone feel out of place. I don't mind answering questions about the G-tube or our situation with Gideon. I don't mind ignoring the elephant in the room, in an attempt to normalize it. What would make me angry is if someone assumed things about Gideon because of his G-tube and vocalized these assumptions or if someone verbally spoke up about loosing their appetite, while guzzling wine and asking us to be more discrete. I'm so glad there was no one like that at our first G-tube outing.<br />
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I think the next time I see someone else G-tubing in public, I'll smile to myself- as a nod to mutual understanding and in support of societal norms. <br />
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JennyChickdeehttp://www.blogger.com/profile/02448368740284553397noreply@blogger.com0tag:blogger.com,1999:blog-2307275673717332511.post-27284656103691334102016-06-24T10:14:00.000-04:002016-06-24T10:14:22.898-04:00Coming to Terms with the TubeI have mixed feelings about Gideon's G-tube. <div>
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It looks so foreign, not in a cool way like a piercing or a tattoo but more like a workplace shrapnel accident. I'm sure with time I'll come to embrace it but right now it's just hard to swallow. I wonder if I'd feel different about it if he had it right away. If Gideon couldn't eat at all right from the get go, I'd probably have nothing but praise for the direct access to his stomach. The G-tube seems to mock me or challenge me. It's trying to one up me. I look at it and feel pressured to feed him, to get as many calories into him as possible. I offer Gideon a bottle and I try to coax him with songs and games, anything to get him to bite onto that nipple. Right now the feeding plan involves me feeding him orally on a very set schedule. Whatever he doesn't eat, I offer to him orally about an hour later and whatever he doesn't eat then, I put into the G-tube, followed by a "flush" of water. The trick about it is that you don't want his stomach to be too full or he might throw up. It gets even more challenging when I try and feed him solids. These have less calories than the formula, sit heavier on the stomach and for some reason have not really been taken into account in "The Feeding Plan" given to us by the dietitian. </div>
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I feel like I have a newborn again. </div>
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So far we have only used the syringe to feed him through the tube. There is also the option of using a pump. With this option you hang a feeding bag on an IV pole and thread the tube through the pump, like threading a sewing machine. You hook up the tubing to his G-tube and the pump will slowly feed him over whatever time frame you program the pump for. This option might be helpful if Gideon is feeling nauseous. Being able to feed him a large amount slowly over a longer period of time is much easier on the stomach than a quick large bolus. Some parents even do this while their child is sleeping. </div>
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We had a weigh-in yesterday and Gideon is over 18 pounds. Obviously his growth is not as dramatic as we would like, but I know the G-tube will help us work toward our goals.</div>
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<span style="color: blue;">Bring on the catch up weight! </span></div>
JennyChickdeehttp://www.blogger.com/profile/02448368740284553397noreply@blogger.com0tag:blogger.com,1999:blog-2307275673717332511.post-55681274098791376172016-06-20T13:48:00.000-04:002016-06-20T13:48:12.265-04:00Caffeine and the Walking Dead Exhaustion. There is no other word for it. <br />
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Yesterday after we were discharged, we drove to my sister's house to pick up Alexander's health card and to break up the drive home. There were birthday veggie burgers, streamers, a dancing golden retriever, lot's of presents and of course cake and candles. Alexander had a very nice birthday celebration, despite the chaos of discharge and long car rides. The Ronald McDonald House even let him pick out a toy, before we left, from "the room that pirates leave toys in", in honour of his birthday. This year's gifts seemed to centered around Star Wars, Lego and Dinosaurs. We didn't get back home until after 7pm. About 10 minutes after we got home, we received a call from the community nurse asking if she could come over for a consult. It was close to 9pm before she left. John and I both wanted to crash but Alex was having a hard time settling after all the excitement of the day. It was closer to 9:30 before he was still. Gideon woke up maybe twice last night and I'm sure my snoring kept John up most of the night. This morning we had Physio and OT over and now the community nurse is on her way over. I think I'm on my third cup of joe. <br />
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I just want to catch my breath- that or shower. Hmmmm... breath or bathe?<br />
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Got to go, nurse is here.JennyChickdeehttp://www.blogger.com/profile/02448368740284553397noreply@blogger.com0tag:blogger.com,1999:blog-2307275673717332511.post-26731535756873752932016-06-19T09:27:00.002-04:002016-06-19T09:27:26.948-04:00Discharge TodayThey surgery team came in this morning and took out the buttons holding his stomach and gave us the all clear to go home!<br />
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What a great day! Father's day, Alex's birthday and now it's discharge day too. <br />
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<span style="color: blue;">So much to celebrate!!!</span></div>
JennyChickdeehttp://www.blogger.com/profile/02448368740284553397noreply@blogger.com0tag:blogger.com,1999:blog-2307275673717332511.post-62085448497148564602016-06-18T11:31:00.000-04:002016-06-18T11:31:15.428-04:00Upset TummiesAlexander and John came yesterday afternoon. It was so nice to be reunited as a family. But then at supper time, Alexander began to throw up. Really? John told me he threw up during the night too. Now they have to stay away from the room so Gideon doesn't catch it. I'm a little worried he may have already caught it. Last night Gideon threw up and he was really fussy and seemed both nauseous and in pain this morning. He was refusing the bottle and was even pushing me away when I tried to hold him/comfort him. He's doing better now with some anti-nausea medication and more Tylenol. I just hope it's not going to turn into something more. Part of the pain problem might be due to a hematoma (a swollen blood clot) that has developed by the insertion they made in his bellybutton. It's also really bruised looking. Poor little toad. They are hoping to take out the buttons holding his stomach in place tomorrow. These might be causing some pinching too and hopefully he will be in less pain when they are gone. <br />
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The good news is that Gideon passed his Milk test and they didn't see any significant signs of aspiration. This means we can continue to feed Gideon orally and just top him up through the G-tube!!! I am really happy about this because it would have been really hard on both of us if he had to stop eating orally. It's such a comforting thing and a means of connecting with him. Also, I'd hate to see all the hard work he's been doing to better his oral motor skills and the progress he's made in the fight against oral sensitivity issues with textures/tastes go all to waste. <br />
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Here's to better days on the horizon and hopefully Alex will feel better for his birthday tomorrow. Not exactly sure where the celebrations will be held if he's still sick. Maybe we should just push it off a day or two. Do you think he'll notice? JennyChickdeehttp://www.blogger.com/profile/02448368740284553397noreply@blogger.com0tag:blogger.com,1999:blog-2307275673717332511.post-71167634983473925792016-06-16T10:38:00.000-04:002016-06-16T11:02:05.952-04:00Winning the BattleWe had a really good night. Gideon is not in as much pain, he is no longer taking morphine and they just took out his IV. (Oh what a stinky stinky hand) He is alert and settled. He's only thrown up three times- twice while trying to give him oral Tylenol through a syringe which he has always protested over and once after the first oral feed which he drank so quickly, it's no wonder he threw up. I think the plan is to keep him in for a few more days so they can make sure the feeds are going well, to remove the buttons pinning his stomach in place, do a special test to see if and how much he might be aspirating and to make sure he his bowels are working. Poor little toad has not pooped since Sunday.<br />
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Thank you to all my friends and family for all the love and support; the phone calls, emails, flowers, thoughts and prayers were really really needed and very appreciated. My spirits were low but now I feel lifted. I am far more at peace about everything and Gideon seems to be doing so much better. God is Good and a Multitude of Prayers does Miracles! JennyChickdeehttp://www.blogger.com/profile/02448368740284553397noreply@blogger.com0tag:blogger.com,1999:blog-2307275673717332511.post-63997618480968000822016-06-15T13:13:00.001-04:002016-06-15T13:13:53.496-04:00Caught a BreakI feel like a bundle of nerves; exhausted, on edge and chilled. I wish I had more sweaters with me. The xray study went well and everything is in place. (Thank you Jesus) Gideon has been sleeping off the excitement and I've been trying to distract myself with a mediocre detective novel. I keep envisioning the G tube popping out and imagine how that must feel. I can't help but feel a little nauseous. <br />
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We have been given the OK to use the G tube again and that we can even try to do a little oral feeding too. It seems that this set back was only temporary. I just hope it doesn't have an impact on the pain management side of things. The nurse brought in a big elastic pressure band to slip around his abdomen. I guess this is to prevent more tubes from popping out. I look at it and wonder if they trust me to move him around. I know this is just the guilt talking, still I can't help but feel a ping of deflation. Like I'm failing in this.<br />
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Things will get better.<br />
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<br />JennyChickdeehttp://www.blogger.com/profile/02448368740284553397noreply@blogger.com0tag:blogger.com,1999:blog-2307275673717332511.post-39443812034145275332016-06-15T09:32:00.000-04:002016-06-15T11:12:35.317-04:00Set BacksI cradled Gideon this morning, with his head on my shoulder and his knees tucked high. He fell asleep. When I placed him back down in the crib, I heard a "pop" and Gideon was no longer so content. Nervously I lifted up his gown. I swore. Four letter words came flooding out my mouth as my heart began to race and my feet turned to pacing. I rang the nurse bell, opened the door and my small voice said "Hello? I need some help. I think his tube came out!" Tears, panic, whispered swearing, consoling as the nurse went to find a catheter to place in the hole. We had to wait for someone from surgery to come. A smooth insertion and a quick tape. Gideon was not too hard to console. <br />
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The nurses left and things were a little calmer. I turned to distracting him. He seemed uncomfortable and was moving around. I checked his belly and the temporary tube had come out and there was more scrambling for nurses and supplies to find a tube that fits. Where is the guy from surgery? Now his tummy is leaking. It's hard to secure the new temporary tube in place. Did you just wipe those secretions with his gown? Thoughts of antibiotics swirl in my head. Please Lord, no infections. He's fighting so hard. He hates being held down. He screams and I try my best to console. The new temporary tube is in and layers of tape make a mess of the site and we wait. </div>
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I feel shaky. </div>
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I sit in a chair and they place Gideon on my lap and I try to make everything better, though my songs and comfort only go so far. The doctor arrives. He asks what has happened as I place Gideon gently back in the crib. He inspects the mess left by the nurses. His student holds down Gideon's legs that try there best to flail and I sing "Black Bird" by The Beatles while holding his arms. Sticky, wet tape is removed to reveal the tube inserted into the stoma. The doctor sucks back some stomach juices with a syringe to make sure the tube is placed were it should be before removing it. Yellowy, brown secretions/juices bubble and ooze out the hole that leads to his stomach. I think my eyes grow a little wide. At least this time, the doctor asks for some gauze and he gently sponges his tummy. He uses a syringe to deflate the small ball of fluid on the Mic Key G-tube that came out and then lubricates it before sliding it into the stoma. He re-inflates the Mic Key (with more fluid than before to hopefully help it to stay in) and tries the syringe again to see if he can suck out any stomach juices to confirm the placement. No dice. By now my singing is having no effect on Gideon's demeanor and it feels like a slight failure on both our parts. The doctor informs me that even though he couldn't confirm placement, he thinks that the stomach should still be attached, as the two buttons holding it in place seem fine, and that there is no play/wiggle room happening with the <a href="http://www.mic-key.com/home.aspx" target="_blank">Mic Key</a> so everything seems to be in place. He will arrange for a study done under xray to confirm before we use it again. </div>
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Worn out, it doesn't take long for Gideon to crash. He's still sleeping now. </div>
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I, on the other hand, am buzzing with adrenaline and coffee, nervously awaiting the porter to bring us to xray.</div>
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Please Lord may this set back not be too great.</div>
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<span style="color: blue;">The guilt is killing me. </span> </div>
JennyChickdeehttp://www.blogger.com/profile/02448368740284553397noreply@blogger.com0tag:blogger.com,1999:blog-2307275673717332511.post-58237215919005836252016-06-14T07:10:00.001-04:002016-06-14T07:10:28.575-04:00Unsettled SleepLast night was rough.<br />
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Gideon was really hard to settle when he woke because of his pain and he seemed more uncomfortable when I picked him up than when lying down. The only thing I could do to calm him was to bend down close and brush my hair across his fingers until he grabbed hold of it himself. I'd chime in with the phrase "You found Mommy's hair" and for a moment he would calm. I sang to him while he held my hair and he would drift back to sleep. Sometimes it worked. Sometimes I had to call the nurse. The doctor came in this morning and suggested an increase in his pain medications. <br />
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This morning he woke up uncomfortable and sad. Right now he has settled - Thank you Jesus. <br />
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<span style="background-color: white;"><span style="color: blue;">I need coffee.</span></span></div>
JennyChickdeehttp://www.blogger.com/profile/02448368740284553397noreply@blogger.com0tag:blogger.com,1999:blog-2307275673717332511.post-92031861245553684082016-06-13T18:35:00.000-04:002016-06-13T19:19:14.914-04:00Now Comes the PainGideon awoke with a scream. I tried to console him. His monitor screamed in response. Where is that nurse bell? Morphine? Is that morphine you gave him? Topped off with Advil? Tears flow as my voice breaks and I can't even sing to him. I hush and shush and rub his back and tell him everything will be ok. I'm not sure if I'm consoling him or myself. It hurts to be so useless. It hurts to see him in so much pain. I set him back down and find my voice again. As I brush my fingers through his hair and sing softly, he calms to a quiet moan and drifts. Sweet little one, I would take it all away if I could- God I wish I could. JennyChickdeehttp://www.blogger.com/profile/02448368740284553397noreply@blogger.com0tag:blogger.com,1999:blog-2307275673717332511.post-77026937835946828782016-06-13T15:31:00.001-04:002016-06-13T15:31:36.671-04:00Dirty DeedsThe surgery went well. Gideon and I are now back in the room and he's sleeping comfortably. <br />
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Maybe it was the stress of waiting room, but when I saw him in the post op room, the reality of it all really hit me. Two small white boxes sat on the crib with him labeled brightly, containing what I assumed were additional parts I would need to feed him with. Gideon looked tired and small. I felt nervous to pick him up, like his insides would fall out the moment he was cradled. The nurse showed me his new addition and I couldn't help but cry a little. My nose dripped as I tried to hide my emotions. I dabbed it on my shirt cuff. As I held Gideon in my arms I thought- What the hell have I just done? Did we need to do this? Couldn't I have just tried a little harder? I was flooded with regret, remorse over allowing this invasive procedure. How could I let someone put this dis-morphing, disfiguring, "thing" in my son? What have I gotten us into? <br />
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I sang to him. My voice soothed him as he drifted in and out of the anesthetic and his stats seemed to even out, with only the occasional alarm to advert my eyes to the monitor. I kissed his head and cradled him close and cried only on the inside as the nurse called the transporter to bring us back to our room. The anesthetist warned us that fluid could accumulate in his lungs. The anesthetic is harder on him than before because of his history of repeated pneumonias. I will have to be diligent with the chest physio. <br />
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After a short chat with the dietitian and little food on the stomach, I feel more level headed. The nurse just gave him some medication via the G tube, so I guess it's been christened. I think it will take some time to adjust to this new chapter -A learning curve of some sorts. I already miss that smooth little belly that I would kiss and tickle; the raspberries that would make him laugh will have to now be a little askew. The rational me is confident that we have chosen the right path. The emotional me still feels a lump in her throat. <br />
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Thank you again for the love and support. JennyChickdeehttp://www.blogger.com/profile/02448368740284553397noreply@blogger.com0tag:blogger.com,1999:blog-2307275673717332511.post-13947206594403832462016-06-11T10:29:00.001-04:002016-06-13T15:39:52.403-04:00G Tube on Monday<div dir="ltr">
I brought Gideon in to see the paediatrician after he threw up last Friday and they admitted him at our local hospital. He continued to throw up and they couldn't get an IV into him. They ended up putting a tube down his nose into his stomach to feed him. This was horrible to watch and pure torture for Gideon. This tube came out twice while we were there; once I think he pulled it out and it came out from his nose. The second time it came out when he threw up and the end of the tube was coming out his mouth while going in through his nose... like that horrible noodle trick people do. On Thursday we were transferred to the London hospital. The plan is to have a G tube put in on Monday. His current diagnosis is failure to thrive. Even if the G tube doesn't stop the throwing up, it might help keep him better hydrated when he gets like this and it also could help with some catch up weight.<br />
On the up side he didn't throw up yesterday and his oral feeds are getting larger. He's doing really well in my eyes.<br />
Thanks for all the love and support.</div>
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