tag:blogger.com,1999:blog-3770066038244579672024-02-02T10:27:40.609-08:00Kyler and Wiskott Aldrich SyndromeKyler's Mommyhttp://www.blogger.com/profile/11246466784838432382noreply@blogger.comBlogger64125tag:blogger.com,1999:blog-377006603824457967.post-2184992037198273432011-03-11T10:57:00.000-08:002011-03-11T11:18:30.387-08:001 YEAR POST BMT!!! :)As of today our sweet baby Kyler is 1 year post transplant!! YAY!! <br />Im going to start this update with just a catch-up/ reminder on what all he went through to get here:<br />-8 Days of chemo (3 of which was ATG which was VERY rough on him)<br />-11 surgeries to this date. ( He will have 1 more & we hope that is all)<br />-The Transplant itself (which was a female cord from Europe that was a 6/6 match and same blood type)<br />-SEVERAL CT scans, Xrays, and ultrasounds<br />- 3 Double Lumen Hickman line, 1 femoral line,1 port & several IV's and blood draws<br />- 3 Staph infections (one of which was in his lungs & VERY scary & required oxygen through a nasal canula) & a rare sinus infection.<br />- Possible GVHD of the skin<br />- SEVERAL medications<br />- 2 feeding tubes<br />- 3 & 1/2 months in the hospital and readmitted once.<br /><br />Our sweet Little Boy has been through so much, but he has stayed strong and amazing through all of it. We are so proud of him and unbelievably blessed to be his Mommy & Daddy. <br />Now an update on how he is doing now. At his 1 year appointment all of his labs looked good. They gave him what they HOPE will be his last dose of IVIG. We wont know for sure though for a couple of months. We have to see how his body responds when he isnt getting IVIG and then the next test of his immune system function will be when we start getting him revaccinated. They are hoping to get his port out in the next couple of weeks or so. For the time being we are still to use the same precautions; Not being around sick people or dogs. He can play with chidren BUT only if they have not been sick or had shots lately. We were told to be very cautious for things like chicken pox etc so it is best that he isnt around children who go to school, daycare, etc because we dont know what the children around them have or could have. <br /><br />On another note; It is so hard to believe that my sweet little boy will be TWO years old next month. It seems like just yesterday we saw him for the first time. He is learning so much! He is the sweetest, funniest, most loving little boy. I cant say enough how much I love him and how blessed I am to be his Mommy! Thank you all so very much for your prayers & please keep praying!Kyler's Mommyhttp://www.blogger.com/profile/11246466784838432382noreply@blogger.com5tag:blogger.com,1999:blog-377006603824457967.post-64059924429177440322011-01-01T17:45:00.000-08:002011-01-01T18:01:37.298-08:00January 1st 2011<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiuxZdUoD93OQBe4wXpIpX-pUhIZKJXAZNEheE1FgHhtBAX0WNtxWLqA-Mqo5NsGDAA7OQ3p7YO4VvU5pHQJTkqbWgYQzadxbIRIUi5OC8k2dDdjWxddWom84CF5lRJF3fGiyu6C2yiZQ/s1600/Its+beginning+to+look+a+lot+like+Christmas+121.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiuxZdUoD93OQBe4wXpIpX-pUhIZKJXAZNEheE1FgHhtBAX0WNtxWLqA-Mqo5NsGDAA7OQ3p7YO4VvU5pHQJTkqbWgYQzadxbIRIUi5OC8k2dDdjWxddWom84CF5lRJF3fGiyu6C2yiZQ/s320/Its+beginning+to+look+a+lot+like+Christmas+121.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5557402876386797410" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwyGAQpYj_Q2L1ieWjIy2lQMN05w-Y0PRYKkc7ii7vbLy5xMzcDTbGsS5I0sVoBxaJDQJ0-2qnxnMLhu89dBKCxkW_86knLrIT5A_OMKwqO-o_kKvGrWBarOxQHhP4uywmV_MzJ8xnRgk/s1600/Its+beginning+to+look+a+lot+like+Christmas+115.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwyGAQpYj_Q2L1ieWjIy2lQMN05w-Y0PRYKkc7ii7vbLy5xMzcDTbGsS5I0sVoBxaJDQJ0-2qnxnMLhu89dBKCxkW_86knLrIT5A_OMKwqO-o_kKvGrWBarOxQHhP4uywmV_MzJ8xnRgk/s320/Its+beginning+to+look+a+lot+like+Christmas+115.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5557402870026000978" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguYO7WC1O27h6mFL3RB9J5J2JwDvLiDTXq0iooklm_atDI7e9VSY-kxTXhSPVJ92LoFvl3MG-lyPUDK6zsTZ9aINzKXlDkKgtnc52cCOf1xUUoVylAv15W9UzZ3iRJ4_INv11QXbEDF8Y/s1600/Its+beginning+to+look+a+lot+like+Christmas+089.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguYO7WC1O27h6mFL3RB9J5J2JwDvLiDTXq0iooklm_atDI7e9VSY-kxTXhSPVJ92LoFvl3MG-lyPUDK6zsTZ9aINzKXlDkKgtnc52cCOf1xUUoVylAv15W9UzZ3iRJ4_INv11QXbEDF8Y/s320/Its+beginning+to+look+a+lot+like+Christmas+089.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5557402867924195330" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgi7Bld8QSHnooCTuZZmjxOtk1yep9B0gspkzno4wkUimynpJsJ5sTa5lIFamvjfshi2D6HoRlnzd5PymQIGFq8eHlvaNObwOdezATfl1KjSb52MExnGFzitOy6tg2H2B2uEB_1uureqE/s1600/Its+beginning+to+look+a+lot+like+Christmas+108.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgi7Bld8QSHnooCTuZZmjxOtk1yep9B0gspkzno4wkUimynpJsJ5sTa5lIFamvjfshi2D6HoRlnzd5PymQIGFq8eHlvaNObwOdezATfl1KjSb52MExnGFzitOy6tg2H2B2uEB_1uureqE/s320/Its+beginning+to+look+a+lot+like+Christmas+108.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5557402864263348162" /></a><br />Hi everyone! Thought I would start the New Year out with an update on my little man Kyler. Firts of all, he is off of ALL his meds except IVIG, bactrim on weekends and megace (his appetite stimulant). So far he is doing really great! His immune system function test came back great. One part of his immune system (immediate response I believe it was) is still lower than normal but the rest is doing great. He does have a few signs of GVHD such as slightly elevated BUN and EOS but he isnt showing any other signs of it. We really hope he doesnt have it. Right now the doctors are just watching for any further signs. If everything continues going well then he should have his post transplant tests done, Last dose of IVIG and port out in March and he can finally experience all of the things kids his age get to experience. We cant wait for him to get to play with other kids :)<br />We all had a GREAT Christmas. His room looks like Toys R Us exploded in it and I LOVE it!! Im so glad he had a huge, fun Christmas. He definately deserves it. <br />He is walking GREAT now and has started eating only real foods (no more baby food) and we are about to start getting serious about potty training. Im hoping it goes better than I think its going to :) We are so proud of him and love him so much!! Cant believe he will be 1 yr post transplant in 2 months and 2 yrs old in 3 and 1/2 months. Hes growing up too fast!! OH!! And he told me today for the first time that he loved me. He held my face in his hands and said "I lu you momma" and kissed me on the cheek! SOOO SWEET!!! :) I love him so!! <3Kyler's Mommyhttp://www.blogger.com/profile/11246466784838432382noreply@blogger.com2tag:blogger.com,1999:blog-377006603824457967.post-17236788341031942822010-10-13T10:56:00.001-07:002010-10-13T11:06:45.898-07:00more BMT pics<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjP05fhdI1y2ZQJCLs0LRSc6DCD7a7nU3X0h2zpV8jKi2-1LiEKFUo6xVUbTHuxJlPFJFcB84Dcj1i3uu7Ge1eHEJpXVy6Ua0db79l99tEwEF-7po1qAlSeUWaXmDRjtryuKP8nEn5sUD8/s1600/Pics+673.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjP05fhdI1y2ZQJCLs0LRSc6DCD7a7nU3X0h2zpV8jKi2-1LiEKFUo6xVUbTHuxJlPFJFcB84Dcj1i3uu7Ge1eHEJpXVy6Ua0db79l99tEwEF-7po1qAlSeUWaXmDRjtryuKP8nEn5sUD8/s320/Pics+673.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5527593700342740130" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1wndt89th_1QqfaeHXpFiEP1KwfN8HcNRSeDnJAAxHpEjXySRy4gh-4qokk82YTLwVXCSKH-azY7wlkGBJ5kkDK1Q-CQZs18NCrVxG-iWC_hDhUlJfvZWL7hwD4OHrcjJtqNS46ORUcc/s1600/Pics+599.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1wndt89th_1QqfaeHXpFiEP1KwfN8HcNRSeDnJAAxHpEjXySRy4gh-4qokk82YTLwVXCSKH-azY7wlkGBJ5kkDK1Q-CQZs18NCrVxG-iWC_hDhUlJfvZWL7hwD4OHrcjJtqNS46ORUcc/s320/Pics+599.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5527593697983527506" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4q9vz7L7wjC_ECv3dbYtwqmurMZIVjfsWKYvPTtwMGP2ioeQ0zgmU3ToCT_2_yzYCA-ZPB5vWs5xu5UH0S3vB-mmF2-nbul2IipfgqZS56CQuRVRTayC-EPer0a8TwgKGJ0ynErtwRy0/s1600/Pics+592.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4q9vz7L7wjC_ECv3dbYtwqmurMZIVjfsWKYvPTtwMGP2ioeQ0zgmU3ToCT_2_yzYCA-ZPB5vWs5xu5UH0S3vB-mmF2-nbul2IipfgqZS56CQuRVRTayC-EPer0a8TwgKGJ0ynErtwRy0/s320/Pics+592.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5527593691808200434" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBH-dsnskoScmPBATNQNb-BJdUK0f7OhgoCM65QwsCNSKfKyMN5ZaJLAgJzjGATnp71lo5hAA5KtzEDllWDUM2bdq_IhXdyYH1pwhLuy-NEtzkMMxosX6M7YEfJ29SL59-2vKp6DvZyLE/s1600/Pics+528.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBH-dsnskoScmPBATNQNb-BJdUK0f7OhgoCM65QwsCNSKfKyMN5ZaJLAgJzjGATnp71lo5hAA5KtzEDllWDUM2bdq_IhXdyYH1pwhLuy-NEtzkMMxosX6M7YEfJ29SL59-2vKp6DvZyLE/s320/Pics+528.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5527593685224119442" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFdVIDlGBKxEDsP6oMpMB-lzeckmLSbpDg5dgfuJhxqexVvYNstlv3gxGC1Hi9sjKOZefm04Nit7DLVnV_UjmTNOwZffxc7CFluakzhDbndQsU6gbBFDP2EtMDeOSgrKXFqbNrvNc_7LA/s1600/Pics+451.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFdVIDlGBKxEDsP6oMpMB-lzeckmLSbpDg5dgfuJhxqexVvYNstlv3gxGC1Hi9sjKOZefm04Nit7DLVnV_UjmTNOwZffxc7CFluakzhDbndQsU6gbBFDP2EtMDeOSgrKXFqbNrvNc_7LA/s320/Pics+451.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5527593676143483378" /></a>Kyler's Mommyhttp://www.blogger.com/profile/11246466784838432382noreply@blogger.com0tag:blogger.com,1999:blog-377006603824457967.post-31147011437202641432010-10-13T10:49:00.000-07:002010-10-13T10:55:49.960-07:00transplant pics. Way Overdue!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz137CwzFYht_DOsO_mruHvPERIsV8KI19zeMo6GdkED1Pcg6YAkxwghYK7GrcBvAYGufvoF_ZZ7dDUy-U3v-VkqEclgVa_m1aHL2S9hfsKnbmIsYXpcYZ30GJodbN5IV6MyyZ8AadS6g/s1600/Pics+424.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz137CwzFYht_DOsO_mruHvPERIsV8KI19zeMo6GdkED1Pcg6YAkxwghYK7GrcBvAYGufvoF_ZZ7dDUy-U3v-VkqEclgVa_m1aHL2S9hfsKnbmIsYXpcYZ30GJodbN5IV6MyyZ8AadS6g/s320/Pics+424.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5527590894289119890" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtv9SBVz4oI1Fb9SrUVQwWHr22qzzaeyv2Hx6wUlJc16BSoQuaRSVReQEq_3KvY33vKGlkoCauwKDbPrf4erZ2xJ0fcVgUOD5eMZ08Hpb6H2P6jS_rVatkCSQ9iG-WfvK-CF_mZ_09iyE/s1600/Pics+392.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtv9SBVz4oI1Fb9SrUVQwWHr22qzzaeyv2Hx6wUlJc16BSoQuaRSVReQEq_3KvY33vKGlkoCauwKDbPrf4erZ2xJ0fcVgUOD5eMZ08Hpb6H2P6jS_rVatkCSQ9iG-WfvK-CF_mZ_09iyE/s320/Pics+392.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5527590890269476322" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVu7AlP4dFTk1QHwMJiFMYotllQ3BSucReIiGMcl62qA12HjLoH_nqu2E8FhvgwojzdvTrhAMTPI9-6TdXuoBRurp0FxmuLw0vOSpXMCbDYt7PMiPZs27_niRkssRKhHdGWD7aNKUL2_M/s1600/Pics+394.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVu7AlP4dFTk1QHwMJiFMYotllQ3BSucReIiGMcl62qA12HjLoH_nqu2E8FhvgwojzdvTrhAMTPI9-6TdXuoBRurp0FxmuLw0vOSpXMCbDYt7PMiPZs27_niRkssRKhHdGWD7aNKUL2_M/s320/Pics+394.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5527590886159252418" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4x28pT-LDkzWpLXTLz0mWwErXxFjAW6_RNuBS3v_6svvFqeKD1Ls796feiKgqGPNQVmNb8EU0TVCWKAblXb7cWqPKYZVZLRF6xTr0vTl8EACYMklDh2E5Mr_K2p0yCYAxb6u8qYxj1do/s1600/Pics+371.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4x28pT-LDkzWpLXTLz0mWwErXxFjAW6_RNuBS3v_6svvFqeKD1Ls796feiKgqGPNQVmNb8EU0TVCWKAblXb7cWqPKYZVZLRF6xTr0vTl8EACYMklDh2E5Mr_K2p0yCYAxb6u8qYxj1do/s320/Pics+371.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5527590876780491458" /></a>Kyler's Mommyhttp://www.blogger.com/profile/11246466784838432382noreply@blogger.com0tag:blogger.com,1999:blog-377006603824457967.post-62441174249676695642010-10-13T10:41:00.000-07:002010-10-13T10:49:28.019-07:00Just some pics<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfK61YjYJs1NJuubG8HtTvCkNau5awxzK6L-kCE0u0Pc3v8hUrVXTD_yAGyM322nPgMx97cVOcEE0h3C_yykyF4utA9o5F9dJ5IYCd-a0AMV5mNnPCkVje_XhLokzMSFo_ZB2feK9fHx0/s1600/Pics+937.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfK61YjYJs1NJuubG8HtTvCkNau5awxzK6L-kCE0u0Pc3v8hUrVXTD_yAGyM322nPgMx97cVOcEE0h3C_yykyF4utA9o5F9dJ5IYCd-a0AMV5mNnPCkVje_XhLokzMSFo_ZB2feK9fHx0/s320/Pics+937.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5527589177783286738" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsnCAb0DnAW8cfL3_mAnheSekNHMryCMY-VVI1zpq19V9SjqW8uqJ1UGXWzqDw6GZsZx2kvCRQ02mE1I-bv2Z7cYfaUTNDljGrJTWRkJGpM16RMJOtNi9lC1BD1GkDvWmDHzJ7VR5I5mQ/s1600/kyman+008.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 316px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsnCAb0DnAW8cfL3_mAnheSekNHMryCMY-VVI1zpq19V9SjqW8uqJ1UGXWzqDw6GZsZx2kvCRQ02mE1I-bv2Z7cYfaUTNDljGrJTWRkJGpM16RMJOtNi9lC1BD1GkDvWmDHzJ7VR5I5mQ/s320/kyman+008.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5527589172952011970" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNpGHueMD1JgaPPDTaCW6ISoEd93oodgx9Z26-xYmu2fsdYzreF3VoTJQ3vWrrBVQUoj2kI-Zpo3tNuZWUGOFIiSnub2se0ACBBX5iMsgWBMGTZTXOlNX8TdRhbqAh9MiHR93pWxLFvJU/s1600/PICTURES+013.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNpGHueMD1JgaPPDTaCW6ISoEd93oodgx9Z26-xYmu2fsdYzreF3VoTJQ3vWrrBVQUoj2kI-Zpo3tNuZWUGOFIiSnub2se0ACBBX5iMsgWBMGTZTXOlNX8TdRhbqAh9MiHR93pWxLFvJU/s320/PICTURES+013.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5527589164899290274" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPIe4MKvlfxzDdm4jFumnJK-5W0ilSIBguMf5KmQQ5biFe6hNa6n4hXWbsN0bPEimwVHAgV0XgrcORiSw0nLkEF1L8rWgDao3nf43ZSJbaCI9JkgXhoF3RnxScZdXR0V1XsYkEIhOqNtU/s1600/My+loves+009.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPIe4MKvlfxzDdm4jFumnJK-5W0ilSIBguMf5KmQQ5biFe6hNa6n4hXWbsN0bPEimwVHAgV0XgrcORiSw0nLkEF1L8rWgDao3nf43ZSJbaCI9JkgXhoF3RnxScZdXR0V1XsYkEIhOqNtU/s320/My+loves+009.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5527589162409092258" /></a>Kyler's Mommyhttp://www.blogger.com/profile/11246466784838432382noreply@blogger.com1tag:blogger.com,1999:blog-377006603824457967.post-87668256498547916452010-10-08T12:49:00.000-07:002010-10-08T12:59:08.141-07:00So far so Good! :)<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwt247t5SYhGr99srNd7cNIbubQHJStiEf2jeAkRSAe0JwcMMf1Fw9gIpA1VUugqKoozu_lT7D1O0B8bUEufGs8yl3NmJft4iHnUKkdtcJOkn2k6ca6fTKlfYUwllUc8wmdUC_ppLkNv0/s1600/KLM+012.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwt247t5SYhGr99srNd7cNIbubQHJStiEf2jeAkRSAe0JwcMMf1Fw9gIpA1VUugqKoozu_lT7D1O0B8bUEufGs8yl3NmJft4iHnUKkdtcJOkn2k6ca6fTKlfYUwllUc8wmdUC_ppLkNv0/s320/KLM+012.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5525766988906674578" /></a><br />WOW!! It has been a while since I have updated. SO much has happened...but Ill just try to keep it to the basics.<br />First I'll talk about health related issues: Kyler is doing great! He is being weaned off of his immune suppresants and is down to 2 meds during the week and 4 on the weekend (still has Bactrim and Zofran on wknd). The results from his immune tests were MUCH better than they were 3 months ago. Still not 100% but MUCH better :) Everything else seems to be moving right along perfectly. Its amazing to see my little boy with 400K platelets. He can play as rough as he wants and I dont have to worry as much.<br />Now..The Fun info ...He is growing up soo fast and he is soo funny!! He is learning to say the most hilarious stuff!! He is almost walking...He gets excited and starts running and falls down. He is doing great though pushing his little push and walk toy. He is still just as amazing as ever!! I am soo proud of him and love him so much!!<br />Other than that there isnt much else...well, there is..but I said I was keeping it short! I could talk about my sweet little man ALL day!! :) He keeps us laughing!! I am going to attempt to include a photo..There are TONS so I am going to just pick a good one (Well, to mommy they are ALL good :) )Kyler's Mommyhttp://www.blogger.com/profile/11246466784838432382noreply@blogger.com4tag:blogger.com,1999:blog-377006603824457967.post-87198687701149587192010-07-27T08:33:00.000-07:002010-07-27T08:38:58.326-07:00Back home..We came back home last wednesday, after a week and 1/2 in the hospital. Kyler had his double lumen (CVL) removed and had a port put in. He had ups and downs with fever but after about a week his fevers stopped. He started eating and feeling better so we got to come home with oral antibiotics. He still doesnt feel completely like himself but hes getting there. Its taking a while to get him to crawl/ try to walk but we are definately making progress. He is eating GREAT!! Even better than he was before we went into the hospital this time. Hopefully having the port will cut down on the chance of him catching another infection like that. We are praying that that was his last inpatient visit to the hospital. We go back to the doctor Thursday so we will know how much his counts have came back up etc. He is still just as sweet as ever. please keep him in your prayers.Kyler's Mommyhttp://www.blogger.com/profile/11246466784838432382noreply@blogger.com3tag:blogger.com,1999:blog-377006603824457967.post-84974008529757516942010-07-13T09:40:00.000-07:002010-07-13T09:52:23.241-07:00Back at ChildrensSunday night at 11pm our sweet baby Kyler started vomiting....well, like I always do when he seems outof sorts, I checked his temp. It was high for him but not fever yet so I continued checking it and by 11:15pm he had thrown up several times and his fever was 100.7 so we brought him into childrens. By the time we got here his temp was already 102.8 and they did cultures which had already grown by 2am. He had a gram negative (not sure exactly what yet bc results arent complete) infection in his line and blood. They started him on 3 very strong antibiotics and yesterday (monday) they did surgery and pulled the line. He now has IV's in both feet and one in his arm. He has had constant high temps and has been a miserable little boy up until a few hours ago. His heart rate was super high the first night but it had went down by last night. The nurse and I sponge bathed him and changed all of his bedding and then I finally got to hold him for the first time since sunday night (which I slept with him all night sunday night both in his bed and on my cot. He wouldnt even lay down that night unless he could atleast touch my hand or something) ...after his bath and everything he sat on my lap and we went to the window and I opened it so he could see out. Then he fell asleep on me and when he woke up he smiled and said hey momma...and then said dadda and looked around like he was looking for his daddy. That is the first time he has talked (other than when he has cried for his mommy when they are doing stuff to him which breaks my heart bc I cant make it just go away) since sunday and he even smiled and giggled a little.HOPEFULLY things are headed up from here on out. As always, he has been so strong. Please keep him in your prayers.Kyler's Mommyhttp://www.blogger.com/profile/11246466784838432382noreply@blogger.com3tag:blogger.com,1999:blog-377006603824457967.post-55238108866444615712010-06-21T12:44:00.000-07:002010-06-21T12:47:49.265-07:00Day+101Quick update. Most things are going great with Kyler. However he has a rash on his back chest stomach and legs that they thought was GVHD. Well, the one on his back is infected with staph and possibly also has a viral infection in it (the rash). We will be finding out the final results on thursday and if it is viral we will be admitted to the hospital for strong antibiotics. Right now he is home with strong antibiotics.<br />Other than that he is doing great! He is still working on walking and is doing great pulling up and attempting to walk. We are so proud of him. He is so happy and sweet.<br />Not much else health wise has changed. He does have 317K platelets now which is GREAT!! We are super excited about that. Well, I will try to update when I find out any more results. Please keep him in your prayers.Kyler's Mommyhttp://www.blogger.com/profile/11246466784838432382noreply@blogger.com3tag:blogger.com,1999:blog-377006603824457967.post-90830144772748551072010-06-09T09:33:00.000-07:002010-06-09T09:42:02.868-07:00Day +89<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMEkBpQgEEv3c8YJ47fWHG7eOrwyzuoLN8xCa0mVMa6veDMj2mOP8hql9YLZAtYO1rDzuIsd0cNDcvgIG4p8TV-fhnVyNa53txVA1whrE-TYSvqcGzGOB6zxYHd7aASSD0OOhX5rAYPRo/s1600/kys+twin+014.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMEkBpQgEEv3c8YJ47fWHG7eOrwyzuoLN8xCa0mVMa6veDMj2mOP8hql9YLZAtYO1rDzuIsd0cNDcvgIG4p8TV-fhnVyNa53txVA1whrE-TYSvqcGzGOB6zxYHd7aASSD0OOhX5rAYPRo/s320/kys+twin+014.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5480814959420431250" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNUaCVg-9qBHY3e-7Xu2Dh1K1w_eIs7r2iWOd5_IeX_OZjv8HYzCC_cNQm6UrIVB9OMCE93hiwfwSQ1Us8nGnl0VfRGKz9h9moVMzQz51dseFMMYT5lXcmBdrY3fkwRrKds_G_06I2MNA/s1600/kys+twin+012.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNUaCVg-9qBHY3e-7Xu2Dh1K1w_eIs7r2iWOd5_IeX_OZjv8HYzCC_cNQm6UrIVB9OMCE93hiwfwSQ1Us8nGnl0VfRGKz9h9moVMzQz51dseFMMYT5lXcmBdrY3fkwRrKds_G_06I2MNA/s320/kys+twin+012.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5480814945074893362" /></a><br />Well I havent been able to update in a while. Things have been busy with the move to our new house, Kylers doc appts etc. This is going to have to be a quick one too. So far things are going well. Kyler does have stage 1 GVHD of the skin but everything else is great. He LOVES pediasure so his nutrition levels are good and his counts are great. Platelets were 290K at the last appt. Right now we are treating his GVHD with cream and an extra immune suppresant. Hopefully this will help. We want to avoid steroids etc if at all possible.<br />He is getting so big. He is starting to try to walk on his own and is learning so many new things. He is still super cute :) He is so funny and sweet and Im so glad to see him happy and able to play on the floor without me stressing. Platelets and an immune system are amazing :) Well Now that we are home I can finally include pics. There are so many from the hospital I would LOVE to post but that would take a really long time so I think I will just post a new one. Thank you all for your prayers and thoughts, and please keep parying for him...He isnt out of the woods yet but so far we are on the right track.Kyler's Mommyhttp://www.blogger.com/profile/11246466784838432382noreply@blogger.com1tag:blogger.com,1999:blog-377006603824457967.post-16274572208259742502010-05-22T16:23:00.000-07:002010-05-22T16:27:07.219-07:00Day +73 Still home:)So very quick update.We have officially been home for a week now. Things are good so far. Kys appetite is increasing some with the help of an appetite stimulant. He may have Cdif again we are still waiting on the results but everything else seems to be going good :) He is already down to only having to go to clinic twice a week which is great. I just hope things continue to look up and he continues to do so well. There are a few things we are watching but Ill get into that more if it becomes a problem. We are LOVING being home. He has slept so much better had less sinus issues and just had so much more fun :)<br />In other news we will be moving into our new house next wknd and are super excited. :) Kyler went to it today and LOVED it :)<br />Well thats my quick update just wanted to let everyone know that for the time being things are calm and good for Ky. Please pray in continues to stay that way :)Kyler's Mommyhttp://www.blogger.com/profile/11246466784838432382noreply@blogger.com2tag:blogger.com,1999:blog-377006603824457967.post-11060772187672041082010-05-15T03:14:00.001-07:002010-05-15T03:18:50.131-07:00day +66 WE ARE GOING HOME!!!!!I am up at 5am updating and hopefully will soon be getting ready TO GO HOME!! WHOOHOOOO!! :) We are suppose to get to go home some time this morning if everything goes well and as planned. WE are ALL THREE super excited! Cant wait for Ky-man to see the outside world again :) Please pray he continues to do well..No GREAT once we get home :) We were told and we know to expect atleast one readmission but we are hoping he surprises us all and does wonderful and never has to stay another night here.He's definately had his share of hospital stays and he been a trooper through it all. Hes such a strong little boy and we are so proud of him. Please keep him in your prayers :)<br /><br />In other news...Gene Chizik (Auburns coach) came to see him thursday and took pics with him and us. It was SUPER exciting! He and his wife are VERY sweet/ great people. This last week has been one of the best weeks here. Hope it only gets better once we go home. :)Kyler's Mommyhttp://www.blogger.com/profile/11246466784838432382noreply@blogger.com1tag:blogger.com,1999:blog-377006603824457967.post-36389391514843731792010-05-12T13:38:00.000-07:002010-05-12T13:59:35.650-07:00Day +63 Things are looking GREAT!!Okay, so I am going to start this blog by listing some AWESOME facts:<br />1.) Kyler is eating and drinking on his own w/o the feeding tube (this past saturday he decided to throw it up and has had a much better appetite since:) )<br />2.) Kyler is on ALL oral meds and is doing AMAZING with all of them EVEN the Cyclosporin which they warned us he may either, not take, or throw up. he drinks it like its juice :)<br />3.) Kylers counts are AWESOME!!! Platelets are 187K and white blood cells were 9K<br />4.) We MAY be going home soon if he continues to eat/drink and get enough nutrition on his own.<br />5.) His sinuses are MUCH better :)<br /><br />Now, How it all came about because is it a very interesting story :)<br />Kyler had his TP feeding tube (which goes deeper than a NG tube) placed two tuesdays ago. Well by the end of the day he had thrown up so much that we just knew it was NG again. Long story short they managed to get his feeds up to 40ml/hour after two weeks. This past weekend he was very nauseated and was throwing up a lot. The tube then proceeded to get clogged up. They had an xray done to see what position it was in and to our amazement/ shock it was STILL TP!!! That was on saturday during the day. Well, Saturday night Kyler threw up FOUR times which was a lot more than he had been recently. I got up with him to do my routing diaper change around 2am and he started vomitting for the fifth time. Well, as we always do I was holding the tube and having to push it back into his nose every time he would gag/vomit...I looked down and here the tube comes OUT OF HIS MOUTH!! I called the nurse and in the meantime I pulled the tube completely out through his nose. As soon as the tube was out he was SUPER thirsty and drank 3/4 of a caprisun. The next day he had a small appetite and by monday of this week he was eating/ drinking like a little piggy compared to what he had been doing. Coty and I and the doctors were SUPER exicted!! He has done so welland as mentioned before yesterday he was put on ALL oral meds other than his antibiotic.<br />Now, about going home. WE MIGHT be going home earlier than originally suggested or it could still be next week. We have to do several things to go home. We have to make sure his oral cyclosporin levels are good,make sure he is getting enough calories/fluids and do several "check out" things such as tutoring about at home care (even though we had been doing most of it before all of this) ordering certain things (like his ID bracelet which super-mommy (me) has already ordered LOL ) and we have to make payment arrangements etc. Other than that we are one foot out the door and let me tell you...I truelly believe the day we leave Kyler will miraculously start walking/ running to the car LOL I know he is JUST as ready if not more to get out of this room as we are.We are so proud of him. He has done amazing through everything!! He is my little trooper!<br />With that said...just some extra "notes"....He Is Not out of the woods yet. For the next 6 months or even a year ANYTHING can happen.Even though his WBC's are great he Does NOT have all of his lymphocytes back yet which are his viral fighting WBC's. He is on an anti-viral that he will go home with but that wont completely block out viruses. We really dont want that sweet baby to be back here after everything hes been through so as much as we want everyone to see/ love on him we are asking that everyone remember his health comes first and he is not 100% yet, so we will still be as careful, well actually more so than we were pre-transplant. It isnt anything personal...but our little Kyler monkey is the most important thing in the world to us and we wont let anything jeopardize his health and everything hes been through. Once everything is almost back normal we would LOVE for everyone to come see him love on him etc. We will be letting people see him, we will just be VERY particular about colds/viruses other children etc,and we will let people know when we feel he is ready for visitors.We want him to get settled and make sure going home doesnt reverse all of the good things weve , well actually HE has accomplished. Thank you all for your prayers and encouraging comments through all of this. Love you all!Kyler's Mommyhttp://www.blogger.com/profile/11246466784838432382noreply@blogger.com5tag:blogger.com,1999:blog-377006603824457967.post-79884458529645889202010-05-01T19:02:00.000-07:002010-05-01T19:11:44.048-07:00Day +52 Still at ChildrensWell, We are still here. We Were going to be going home this week but they found the cause of Kylers sinus issues. He has a very rare, odd bacterial"Bug" that takes 6 months to a year of treatment to kill. Well, I.D came up and said they want him on 6 WEEKS of I.V antibiotics. Since he has already been on three that means we need to stay here for 3 more weeks. The good news is that it is NOT contagious and the even better news is that as long as we are treating it and not letting it go crazy then it is not dangerous for him. He now has a TP tube and is doing very well with feeds through it but the meds still make him a little nauseated. The meds are getting better too though. Atleast we have 3 more weeks now to maybe get him eating so that we dont have to go home with the tube. Other than that all of his medical stuff is the same. He is producing platelets now ON HIS OWN!! WHOOHOO :) His platelet count today was 101K and he hasnt had a transfusion in 2 weeks! YAY!!! That was a big plus :)So far everything else is going good. He has had a lOT of diarrhea due to the fact that his stomach is "learning" how to work again so that has made his bottom extremely sore even with ointment so now he hates getting his diaper changed. He does, however,LOVE his baths again and he showed it by giving me a bath tonight with him LOL It was so GREAT to see him splashing around and playing in the tub again that I just sat there and let him soak me and I loved every minute of it bc he was sooo happy!<br />He is doing really well with his walking. We still have to hold his hands but he is getting braver and tried to let go and the other day he stood all by himself for about 20 seconds. It wont be too long before hes walking..wait RUNNING LOL out the door :) He gets excited when they let him out of the room and he always tries to escape if he can. hes TOO funny! He is also saying a lot of new words and has all kind of cute new things he does. I still cant believe he is 1...My baby is growing up sooo fast! Gosh I love him so!! Well, we are going to bed..I just wanted to do a quick update while he is sleeping. We've been having so much fun now that he gets to get off of the pump for 12 hours and can actually walk around and play without having lines hanging off of him, and I have completely forgotten to update. please keep him in your prayers and HOPEFULLY we will be home in around 3 weeks! :)Kyler's Mommyhttp://www.blogger.com/profile/11246466784838432382noreply@blogger.com3tag:blogger.com,1999:blog-377006603824457967.post-22284570711207410722010-04-22T14:30:00.000-07:002010-04-22T14:46:46.022-07:00Day +42WOW! cant believe we have been here almost two months. Hopefully we will be home soon. We know FOR SURE that we will be here ATLEAST 14 more days. Possibly more. Kyler is having a procedure tomorrow to see what it going on with his sinuses. They are going to do an endoscopy on them and culture them and maybe even biopsy some of the tissue that they found on the CT Scan. They now have him on TPN for 12 hours a day (From 6am till 6pm) since he is eating some on his own. This morning his blood sugar dropped a little low and I heard him making a funny sounding whine around 6am so I got up and picked him up and he was sweating, and very limp and wouldnt sit up on his own so I paged the nurse but in the meantime I put his O2 monitor on, checked his BP, temp, respirations and heartrate. His BP and temp were low and he was freezing even though he was sweating. I told the nurse everything when she got in there and asked her to check his blood sugar levels and page the doctor. We ended up giving him some orange juice and 20 minutes later he was up laughing. The rest of the day has been GREAT!! He has been walking around playing and has eaten a little bit and we have played basketball (with his new b/ball set he got for his bday :) ) and he even got to walk about 2 inches out of the room and talk to everyone LOL. Healthwise everything is still pretty much the same. He is on a TON of allergy/ sinus meds and antibitiocs for his sinuses. Luckily his VRP was negative so he doesnt have a virus. His leg is doing much better. They pulled the drain monday and it is healing very well. He is doing so great so maybe tomorrow we will find out what is going on with his sinuses and we can get that fixed and start working on getting home. Im so proud of Coty and My little boy! Coty has taught him some VERY funny faces lately and I have taught him to blow kisses and do this super cute thing with his teddy bear where I tell him not to give Pooh Bear all of mommys love and he hugs him super tight! Its SO cute! But hes so cute LOL :) Well he is napping on my cot and im thinking I might cuddle up and nap with him since we had a long night. :) Please keep him in your prayers!Kyler's Mommyhttp://www.blogger.com/profile/11246466784838432382noreply@blogger.com1tag:blogger.com,1999:blog-377006603824457967.post-82045390320249086012010-04-17T13:07:00.000-07:002010-04-17T13:21:58.015-07:00Day +37Quick update (and thats bc Im running off of 2 hours of sleep LOL ) <br />Okay, so SO far Kylers VRP is negative. STill have 2 days before final results though. He is on more meds for sinuses and is on an antibiotic which should fix sinuses and his infection. Speaking of which last wed when they did surgery on his leg they found that is was a MRSA infection. It was an abscess that was infected. That same morning he had the endoscopy done (hope I spelled that correctly)..All they found was gastritis which the majority of post BMT patients have. SO with that said the best treatment is a medicine to coat his throat and belly and making him eat, and yes it has definately been a "making him" situation. I will say though that he has done WONDERFUL! Particularly today. He has already eaten almost a jar of baby food (which is HUGE for him) and hasnt thrown it up (which is even MORE huge). He has drank a little water and has kept his oral meds down. Yesterday was the first day we forced him to eat and it was a little rough. He kept it down for an hour then vomited it ALL back up. Then he was up all night (except 2 hours between 4-6am) crying with tummy pains. The thing that helped most was letting him lay flat on me, so He and I stayed up and watched cartoons all night. :) Today has been GREAT though!he also attempted to crawl today (which is good bc he HATES crawling) and he was doing really well but then he fell and pulled his CVL a little and got upset and refused to try again. I probably would too though LOL :) He has been asleep now for 2 and 1/2 hours so Im really glad he is catching up on some sleep. The biggest thing keeping us here is his infection and nutrition issues. Hopefully we can get those fixed soon<br />He had a GREAT birthday. I went and got him cupcakes and his daddy an ice cream cake. They both LOVED their presents which made me SUPER happy! :) He was doing so great that day with the nausea that I was able to dress him up in a blue striped polo and khaki shorts TOO CUTE!! (But I think he is too cute even in his yellow hospital gown :) ) They did a study that day and found that he is 100% engrafted. YAY!! That was GREAT news:)<br />Well, the update actually ended up being a little longer than I intended but he is so much fun to talk/ write about I always end up talking a lot :) That is the majority of the new info though. I will update when we know something new. Please keep him in your prayers and thanks to everyone for Ky and Coty's Birthday wishes! :)Kyler's Mommyhttp://www.blogger.com/profile/11246466784838432382noreply@blogger.com3tag:blogger.com,1999:blog-377006603824457967.post-29405661787016827122010-04-15T15:18:00.000-07:002010-04-15T15:32:09.306-07:00Birthday Wishes!HAPPY BIRTHDAY TO MY AMAZING HUSBAND AND PERFECT SWEET AMAZING LITTLE BOY KYLER!!<br />Kyler- Happy 1st Birthday!! The last year has been the most amazing year of my life. I am so blessed to be your mommy. You have made me complete and changed me in so many amazing ways. I could never put into words how much I love you and how important you are to me! God new the huge impact we would have on each others life and I am so thankful every day that you are my little boy! You are so strong and amazing! You make me proud every day- actually every minute :)I am so excited about all of the years I have to watch you grow up!! You could slow down a little bit though :) Youre already growing up so fast! I have no doubt you will be amazing for the rest of your life!You have a place in my heart that is forever yours! As the quote goes "Children fill a place in your heart that you never knew you had" You definately have! God has big plans for you little boy and so does Mommy and Daddy so you keep on fighting and being strong for us! We Both love you so much! Not a minute goes by that you dont make us laugh or smile or make my heart happy! I LOVE YOU!!!<br />Coty- I fell inlove with you when I was 15 and barely new what "Love" was. It never went away and Im glad it didnt. It only got stronger. You make my life complete in so many ways. I know weve had our ups and downs through the years and broken a lot of hearts (esp each others) but we made it through and I feel like we are right where we should be! We made a beautiful baby together and now we have our own perfect little family! I look forward to many years together watching our Children (yes plural..there will be more ;) ) grow up! Weve come so far and changed so much from the 15 and 16 year old who use to fight over who loved who more...Oh wait we still do that :) Weve always came back to each other no matter who or what got in the way, and I think that was God's plan. He knew we were meant for each other and nothing can change that! I LOVE YOU...MORE :)Kyler's Mommyhttp://www.blogger.com/profile/11246466784838432382noreply@blogger.com2tag:blogger.com,1999:blog-377006603824457967.post-5528718742581859962010-04-11T19:48:00.000-07:002010-04-12T17:11:17.918-07:00Day + 31 and Day +32So far Kyler is doing good. They took him of of GCSF so of course his counts dropped but they are working their way back up on their on. His platelets are starting to hold a little better and so his his HGB. The biggest issue now is the nausea/vomiting. The doctor has decided that he is going to scope him this week so we can find out what is going on so we can hopefully start treatment, get him back on oral meds (they were oral then had to go back on I.V) and then hopefully get home so that the Three of us can have our family time together at home :) I am so ready to take him outside to play etc (which it will be a while before he can go anywhere.) I was strict before his transplant when he had some immune system. Now that he has very little immune system Im going to be super strict :) The doctors said to expect it to atleast be 6 months or so before he starts being able to go places, around crowds etc. Thats ok though. Mommy and daddy can find plenty of ways to make home fun for him :) I think he will be so thrilled to have the whole house to play in instead of one room that he wont even notice that he isnt getting to leave for a while :) This week they are going to do a test to see how many donor vs his cells are in his body since it is taking longer for everything to come up on its own. They dont expect there to be any issues with that though. As far as everything else goes, he is off antibiotics, almost off pain meds, and is only on his important meds. (Anti GVHD anti fungal anti virul) and his stomach meds (which there are quite a few of those)<br /> Now fun information. I finally taught him how to blow kisses :) He can now stand up by himself (well holding on to something) for a few minute before he starts losing his balance and today he walked from side to side of the cot holding on to it. Super cute!! He can say "Night night" even though he very rarely actually goes to sleep after saying it LOL :) He is getting SO big!!! I cant believe my precious baby will be 1 year old thursday (The 15th). This year has flown by. It has been the best year of Coty and MY life :) OH and the other day his doctor came in (who he loves) and I kept saying "theres Dr. G" and Ky started saying doc doc doc when he was leaving :) There has been a LOT happen but I havent had time to update in a while and its too much to type :) I included the basics though:) Well, Ky was asleep but then they gave him ativan and now he has his happy going and is calling for mommy so I better go! Ill update when I have a chance. :)<br />Okay, Well I typed the above part yesterday and forgot to post it, so I just added todays to it :). Today Kyler had an NG tube put in. They are hoping his stomach just needs to be stimulated since it hasnt been used in a while. If this doesnt work then they will do the Scope.He did GREAT with the Tube. I played with him and they cuaght him off guard and just put it in. He didnt cry or anything, Just sneezed a lot and as expected he vomited quite a bit afterwards. I was so proud of him though. They were shocked at how good he did. I joked and told them they should be use to how good he is by now. We make a good team...I keep him distracted and he lets them do pretty much whatever they want as long as I stay with him. :) If the scope doesnt show anything they will have to do a more permanant tube. His counts are still coming up. OH And I realized I forgot to mention that his lungs were all clear on the CT scan YAY!!! That was a HUGE deal I just didnt realize I hadnt updated since then. Ive been busy playing with my little boy :) Other than that nothing is different today from yesterday. Please Keep Him In Your Prayers :)Kyler's Mommyhttp://www.blogger.com/profile/11246466784838432382noreply@blogger.com2tag:blogger.com,1999:blog-377006603824457967.post-56195127485319307862010-04-05T10:46:00.000-07:002010-04-05T10:56:47.306-07:00Day +25Kyler had his CT scan this morning. Now we are just waiting on results. Hopefully they will all show clear. His WBC's have slowed down increasing but everything is still going good. His blood pressure is a little high but thats not surprising considering some of the meds he is on. He has some blisters on his leg from where they had to put pressure tape where the femoral line came out SO now we are trying to get that cleared up. They have contacted the burn unit so they will probably be coming to look at him. Other than that everything is the same from the medical aspect.<br />From the "learning" aspect Kyler is loving his new sippy cup which is GREAT!! This morning he drank a WHOLE cup of water. I was SUPER excited. That puts us one step closer to eating thus coming off TPN and getting on oral meds Thus going home :) He had a lot of fun getting out of the room today to go down to CT. It was so cute. He is standing better and learning to transition from sitting to standing back to sitting. I am so proud of him. <br />He had a fun Easter. He had an Easter basket and a bunny and books and a new leap frog cell phone. He was a little tired and ill yesterday but he did seem to have fun. Esp with the paper from the Easter basket :)<br />Hopefully we will know more about the CT later and tomorrow we will have the upper GI and know more about the nausea and vomiting. Things are overall looking good. Weve had two good nights of rest so thats a plus since he is usually very tired during the day after vomiting all night. He is still super sweet as always and gives us lots of love and hugs :)<br />I will try to update when we know more about the scans.Kyler's Mommyhttp://www.blogger.com/profile/11246466784838432382noreply@blogger.com0tag:blogger.com,1999:blog-377006603824457967.post-7011587131696977092010-04-03T19:31:00.000-07:002010-04-03T19:44:53.347-07:00Day +23Kyler has rested a lot today. Yesterday (Day+22) he had his CVL put back in and his femoral line removed. We had a few issues last night with the line that was removed. The area didnt want to clot and continued to bleed. He ended up getting 3 platelet transfusions. It ended up not being anything to worry about but it concerned us none the less. I actually helped hold pressure on it during one of the moments when it decided to start squirting blood.By this afternoon, however, it has quit bleeding but the pressure tape had left blisters so now we are treating those. He did so good during the dressing change. He just laid there and held my hand and played with me. Hes so strong :)<br /> The line itself seems to be good. They x-rayed it to make sure it was in a good place. They had to go a little higher with it and tunnel it a little differently because there was a little blockage in the right side of the vein. They said he did GREAT during surgery. Last night his temp got back up to 100.1 so just to be safe they started him back on another antibiotic (hes still on vanco also) and they did cultured just to be sure it isnt another infection. He was up nauseated most of the night but he has rested very well today and at this moment is playing and making us laugh. They gave him ativan a little while ago and that is his happy med so he is doing pretty good right now :)<br /> As far as the nausea goes: The GI doc came by today and checked him out and said trhat tomorrow she and the attending GI doc will come by and more than likely they will do the scope on him next week (Go down into his stomach with a camera). They doc mentioned that there is a POSSIBILITY of GVHD of the gut BUT all of the lab work suggests that he doesnt have GVHD. We will know more after they explore his tummy. Hopefully it will be something simple to fix. In order to get to go home he has to quit throwing up and be able to take meds and hopefully food by mouth. He was able to keep water down today but he threw the pediasure back up again. He is doing much better with a sippy cup than he was 2 days ago though. <br /> His WBC's are lower than they were yesterday but nothing to worry about. Things are still looking good. He is super sweet as always. He got out of bed once today to sit in my lap (in a chair right beside his crib) and read a Dr. Seuss book. I have come to really like them LOL :) He woke up a couple of times today and kept us laughing EVERY time. He always does. :) I will probably update when we know more about the possible infection and GI issues. We will have some scans monday so hopefully we will know more by then. Please Keep Him In Your Prayers :)<br /><em> Sumathi- Just wanted to say thank you for all of your comments :) I have been meaning to email you BUT I get so busy and I dont usually even have time to do this until Ky goes to bed. When hes sleeping Im cleaning and when hes up Im racking up all of the play/ cuddle time I can get :) I hope everything is going great with you all!! TTYS! :)</em>Kyler's Mommyhttp://www.blogger.com/profile/11246466784838432382noreply@blogger.com2tag:blogger.com,1999:blog-377006603824457967.post-819912298558850262010-04-01T13:17:00.000-07:002010-04-01T13:30:44.883-07:00Day +21 We have Neutrophil Engraftment YAY! :)One of the big days is finally here. Kyler is considered engrafted (from the neutrophil perspective) He is doing so good :) He had a much better night last night. They started another med to help take him off of the morphine and it seems to be working. Now we are trying to find out what is causing the nausea so they are playing around with the meds (increasing/decreasing/"dc-ing" etc) If we dont find out something that way they will take more measures to find out why he is still vomiting. The other news for today is that he has to have surgery tomorrow. They are going to put his CVL back in and take out the temporary line that he has had. So please say a special prayer that the surgery goes great and that hopefully this is our last surgery for lines (That is until it comes out for good :) ) They did an ultrasound to find the best place to put the line to try to avoid any further problems. STill no fever and he's still doing great oxygen wise. Next monday he will have another CT-scan to see if he still has the lung infection and those results will decide where we go from there as far as antibiotics etc. Hopefully it is all gone:)<br />Some fun news: He and I have been working on his standing/ walking/ pulling up etc. Well today he decided to pull up on the side of the cot by himself. YAY! Go MY Sweet baby :) He has kept everyone laughing the last few days. He is so goofy! Also now he not only know how to say "Bye" but he knows when to use it and it makes him so proud! Makes us proud too :) Everytime someone leaves (and even when hes ready for them to leave) he waves and says "Bye" He took out the second bye LOL :) He decided today that he was going to give me a TON of kisses on my cheek which was super super sweet! He's my sweet baby :) He's not a mommys baby at all ;) lol Coty has taught him the "rain dance" and he has it down pat now so I have video taped him doing it. TOO CUTE! He took a few sips of pediasure today and the even better news is he kept it down. Things are going good!<br /><em>BEE- To answer your question- It looks like we will be here another 3-4 weeks or so but Ky's counts arent as high as Max's BTW CONGRATS YOU GUYS!!!! SOOOO Happy for you :) Lots of love for you guys! But, we also still have the issue of Kyler nausea and he needs to be able to take some oral meds before we go home. As you probably already know he can go home on TPN but some meds pretty much have to be oral. So I think we will be here a little while longer. What about you guys?? Any talk of going home yet??</em><br />Well, I better go I think my sweet baby is waking up from his nap and we have a Dr Seuss book calling our names so I am going to get everything ready to read to him. Please keep him in your prayers:)Kyler's Mommyhttp://www.blogger.com/profile/11246466784838432382noreply@blogger.com3tag:blogger.com,1999:blog-377006603824457967.post-36281249628764889772010-03-30T13:59:00.000-07:002010-03-30T14:03:09.715-07:00Day +19 Another High ANCKyler's ANC is 673 so that means two more days with the same counts and he will be considered Neutrophil engrafted! YAY! We are super excited! He still needs more WBC'S and platelets but they said it looks like he is even holding on to his platelets more so than before which is great! Everything seems to be going good. He is only on half the dose of morphine that he was on and his body is sore from the engrafting and the GCSF whch aids in engraftment and make their bones hurt so when he starts aching he gets a little ill but everything else seems to be going great!! He was up happy and playing for 8 and a half hours today before he was ready for a nap. He is definately feeling like himself again :) Other than that things are staying the same. Please keep him in your prayers!!Kyler's Mommyhttp://www.blogger.com/profile/11246466784838432382noreply@blogger.com6tag:blogger.com,1999:blog-377006603824457967.post-54003805345784760792010-03-29T11:01:00.000-07:002010-03-29T11:14:08.910-07:00Day +18 GREAT day!I havent updated in a while because things have been going good and have stayed the same the last few days. He hasnt had fever since last wednesday(which was the day they had predicted that his lungs would be so bad he would be in the ICU ) (Day +13) and hasnt had oxygen since last thursday (Day +14). They are cutting down on his meds especially his antibiotics and his morphine. He seems to be doing MUCH better! He has been waking up and playing and laughing and seems to feel a little more like himself again. It's SOSO great to see him like this again :) So, some POSSIBLE good news is that: for the last few days his WBC's and ANC has been on the rise. Well today his ANC is above 500 so if it stays that way for 3 days then today will be the official day of engraftment. I am super excited BUT I realize that in a matter of hours everything could change for better or even for worse. A few things we have got to work on now is getting his temporary line taken out and either a CVL or port put back in. They will decide which one based on rather or not it looks like he will be going home with TPN. With that said, we also have to start trying to get him to eat on his own again. A few things I am going to change, though, is that since he should be coming off of the bottle when he is 1 (WHICH BTW HE WILL BE IN EXACTLY 18 DAYS AT 4:38pm) I am going to start out with a sippy cup instead of a bottle. When he feels like it we also plan on trying to start practicing walking with him since he obviously has no use and/ or desire to crawl. I probably wont put him back in a walker since it seemed to make him want to walk on his tip toes even when he wasnt in it. A few other medical things that need to happen if he has actually engrafted is that in the next few weeks he will be switching from IV meds to oral meds (That part is going to be a little tricky.) So far everything SEEMS to be going great though! We are soso happy! :) He has kept us laughing the last few days when he is awake. He still sleeps a pretty good bit but he is having periods of time when he is awake and playful and happy. He's also still pretty nauseated..but that could be a mixture of things and should get better with time. I am SO proud of Coty and My little boy! I have been every day for the last 11 months and 19 days :) I have said this many many times BUT he is my little hero!! He amazes me every day! Thank you so much for all of your prayers! I know God has been watching over Ky and has taken care of him since day 1. Please keep praying for him! :)Kyler's Mommyhttp://www.blogger.com/profile/11246466784838432382noreply@blogger.com2tag:blogger.com,1999:blog-377006603824457967.post-53800724279373157672010-03-24T20:11:00.000-07:002010-03-24T20:19:13.858-07:00Day+13 Another Great Day!Today was great. Kyler didnt run a fever at all today. He woke up 3 times to play instead of his usual once a day play time. He made us and all of the nurses laugh several times especially when he was trying to show them how to use the medical instruments and how to listen to his lungs. He grabbed the end of the stethoscope and stuck it to his belly for the nurse. It was HILARIOUS!! We all cracked up. He even felt good enough today to get an attitude and throw a camera because he wanted the cell phone instead. I must admit I was THRILLED that he had that energy again. LOL :) He was back to himself for a little bit today being goofy and making funny faces (esp his piggy face.) As far as his medical status everything is pretty much the same. His WBC's are up to 360 or .36, however you want to look at it. His lungs are still in bad shape. We took the oxygen off today just to see what he could do on his own since his lungs SOUNDED better but as soon as the cannula came off he went from 100% oxygen to 90% in less than a minute. That let us know that he definately still needs the help of the oxygen. Atleast for right now it is just the cannula he needs though. He was nauseated today but today is the first day he hasnt thrown up blood at all. Not even once :) He did have to have platelets because they were 19K and 20K is his parameters. His rashes seem to be getting better also. Hopefully all of these things are signs that we are headed towards better days:) We know that his lungs are going to get worse before they get better but hopefully not too much worse. Thank you for all of your thoughts prayers and cards. Please keep praying for him!Kyler's Mommyhttp://www.blogger.com/profile/11246466784838432382noreply@blogger.com1tag:blogger.com,1999:blog-377006603824457967.post-2601514192214253702010-03-23T19:44:00.001-07:002010-03-23T19:57:04.646-07:00Day +12 Finally good News ! :)They decided NOT to do surgery tomorrow which was GREAT news. I was kind of concerned about Ky pretty much going through 4 surgeries all at one time. They decided it would be worse on him to do the biopsy and so they decided to wait to back in the CVL until next week when maybe his counts will be higher. They are going to treat the infection for both fungas and bacteria and they are going to watch it. Here is the POSSIBLE best part but it is JUST a maybe. Kylers counts are coming up and a lot of the things happening to him can happen before the new bone marrow gets ready to engraft. So, what does that mean? It means that POSSIBLY everything that is happening to Ky that they think is related to the infection, could just be signs that engraftment is around the corner. We are praying that that is the case. However, with that said..He still has some rough patches to come. His lungs are definately going to get worse before they get better. As his body begins to build back up neutrophils and WBC's they are all going to go straight to his lungs since they are a source of infection. WBC's job is to kill infection so that is what they will be trying to do. With everything gathering in his lungs it will make it hard for him to breathe and get enough oxygen without a little help. Today he was put back on the nasal cannula and will more than likely be kept on it until his lungs are completely clear. The doctors think that his lungs problems will be acute but they said it could go so far as to need a ventilator. Hopefully not but we will do whatever is best or easiest for Ky. This option is MUCH better than surgery at this point and time. We were so glad to get some good news and some possible even better news :) <br /> As far as how he is feeling..Today was actually a good day. Last night was GREAT after a fairly rough day yesterday. This morning he woke up nauseated and stayed sick for longer than he usually does. He went back to bed around 9am and slept until 2pm when he woke up wanting to play. I brought him down to the cot with me and we read books and played with his play table and even some medical supplies :) (of course it was none that could hurt him). He played until around 4pm when he started getting tired again and he slept until we gave him a bath and then he went back to sleep. He hasnt only spiked a fever twice today but it hasnt gotten out of the 101's which is GREAT compared to recent temps he has had. He has only had Tylenol once today compared to the every four hour dose he has had to have in the previous days. He seems to be feeling somewhat better but he still gets tired very easy so sometimes he overdoes it. I am just so glad that he feels like getting up some. The next few days could and probably will get worse so I am glad he has had some good days in between the bad. He is holding a little more fluid and is more swollen today but he is still the most precious baby :) I have been taking tons of pics that hopefully I will be able to post at some point. Thank you to everyone for your thoughts and prayers! please keep him in your prayers :)Kyler's Mommyhttp://www.blogger.com/profile/11246466784838432382noreply@blogger.com0