tag:blogger.com,1999:blog-29874565372396266652023-11-16T05:36:07.675-05:00Our New NormalAnything but normal.
Conquering mommy-hood, two boys, two toddlers, special needs, and Trisomy while raising awareness.Erinhttp://www.blogger.com/profile/15085993190140465537noreply@blogger.comBlogger233125tag:blogger.com,1999:blog-2987456537239626665.post-34471117481566621092013-04-29T22:42:00.001-04:002013-04-29T22:42:57.102-04:00Dear Typical Moms<br />
I recently read an amazing blog post by a fellow special needs mommy. It's so nice to see these stories because they remind me that I'm not alone in this journey and hopefully show "typical parents" a glimpse into our lives.<br />
<br />
To understand my following comments please read that blog post <a href="http://www.whattoexpect.com/wom/toddler/dear-mom-of-a-typical-kid.aspx" target="_blank">h e r e</a>.<br />
<br />
This is exactly how I felt when I was asked to come to a mommy's home for a playgroup. A playgroup of mommies and babies that I had never met before and more importantly, they knew nothing about my normal as a special needs mommy. How would I explain the feeding tube, the diagnoses, the scars, the delays? I've got to make sure the solid foods the other kids have aren't in reach of Kaleb. The hardest part for me was watching the children who are younger than Kaleb walk and run and talk while Kaleb crawls around in silence, except for the few babbles he lets out from time to time.<br />
<br />
The playgrounds are another place that I feel out of place, just like this mom. When you find out you're going to be inducted to the "special needs group" you wonder if your child will go to college, have a family, talk, walk, be in regular school classes, etc. You don't think about the awkwardness of having friends outside of this new world, new and old. Not to mention the other questions<br />
<br />
Luckily for me, that playgroup of mommies and their babies have now become my friends. They understand the best they can and ask questions which I love.<br />
<br />
If you see us out, please don't just stare and point...ask questions. Just like you, I'm always happy to tell people about my amazing children.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjp7EoOVv-jfNKlvFJnb8eE5SqkAzA9afk9B8pRPE0UbTLlIv4dFQPuKqj_cPD9NFqNx4prCih33DvsfN27NVKqHJXeNq7SDzHD4nSYd9XDk3vcH2esVooaPUWJFqkQQTTaP56_o_bdalc/s1600/justlikeyou.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjp7EoOVv-jfNKlvFJnb8eE5SqkAzA9afk9B8pRPE0UbTLlIv4dFQPuKqj_cPD9NFqNx4prCih33DvsfN27NVKqHJXeNq7SDzHD4nSYd9XDk3vcH2esVooaPUWJFqkQQTTaP56_o_bdalc/s640/justlikeyou.jpg" width="416" /></a></div>
<br />
<br />
<br />
Erinhttp://www.blogger.com/profile/15085993190140465537noreply@blogger.com2tag:blogger.com,1999:blog-2987456537239626665.post-71936235362147606182013-04-19T15:10:00.001-04:002013-04-19T15:10:23.963-04:00SurgeriesKaleb went back to St. Louis this week and while there we found out that this was going to be his last pair of pre-surgery casts! How exciting! Dennis was able to schedule all three of his surgeries and speak with anesthesia for his pre-op.<br />
<br />
It looks like Kaleb and I will be staying in St. Louis for two weeks in May during his first and second surgeries. Then a month later we will all travel to St. Louis for his last surgery, and from there we will head to Chicago for our Trisomy 9 conference. Everything worked out so perfectly as far as timing and travel arrangements. Our social worker also got us into the Haven House which is similar to the Ronald McDonald House. Here's our plan of attack... :)<br />
<br />
<b>May 4- </b>all 4 of us leave Florida for St. Louis<br />
<b>May 5-</b> Arrive in St. Louis and begin stay at Haven House<br />
<b>May 7-</b> Kaleb's first surgery (place pins in feet and sever tendons, casts put back on)<br />
<b>May 8-</b> hopefully discharge day if all goes well<br />
<b>May 9-</b> Dennis and Nolan fly back to Florida<br />
<b>May 21st-</b> Kaleb's 2nd surgery (cast change in the OR due to pins)<br />
<b>May 22ndish-</b> Kaleb and I return to Florida<br />
<b>June 14thish-</b> All 4 of us leave Florida for St. Louis<br />
<b>June 15thish-</b> Arrive in St. Louis<br />
<b>June 18th-</b> Third and FINAL surgery (remove casts and pins)<br />
<b>June 21st-23rd-</b> Chicago for our Trisomy 9 conference!!<br />
<br />
After Kaleb's last surgery he will have to build up to wearing braces with a bar in between to 23 hours a day for 2 years. I think in the beginning its only a few hours...or maybe its the opposite way and 23 hours to begin with for a few weeks? Who knows, I'm just happy to know future dates for St. Louis! Yay!!<br />
<br />
Thanks again to everyone for helping with Nolan, donations, gas cards, and of course the Southwest Miles into Smiles program for this most recent trip this week. They gave us free round trips tickets for medical transportation. We are forever grateful!<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZ2BvSzKZ9aQidSNZ-_xbqBeYf37aopa6cDTfe470YgYrUFmtb9wHwRP5GZWatW9INJoNcVa8pbwJpdTrSLYQnqlmx6GnfIo-svlk-i_lLVL41saiNpIkn-1Ii-Bh4HAyX_AkHIt_1Ki4/s1600/mtgp+infographic.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZ2BvSzKZ9aQidSNZ-_xbqBeYf37aopa6cDTfe470YgYrUFmtb9wHwRP5GZWatW9INJoNcVa8pbwJpdTrSLYQnqlmx6GnfIo-svlk-i_lLVL41saiNpIkn-1Ii-Bh4HAyX_AkHIt_1Ki4/s640/mtgp+infographic.JPG" width="392" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
Erinhttp://www.blogger.com/profile/15085993190140465537noreply@blogger.com0tag:blogger.com,1999:blog-2987456537239626665.post-46597935214284472332013-04-15T00:15:00.003-04:002013-04-15T00:18:13.856-04:00STL updateWe have now been traveling to St. Louis for Orthopedic treatments for Kaleb for about 2 months. This has definitely been an interesting journey filled with ups and downs. Sometimes I feel like I'm a crazy person who has chosen the most difficult thing to do but then I remember that this is necessary and I'm only doing what is best for my child, crazy or not.<br />
<br />
So far Kaleb is on his 4th set of casts bilaterally and will hopefully only need two more casts, three surgeries, and then many follow ups.<br />
<br />
It's really neat to see the progression every week. For example, Kaleb's middle three toes on both feet have always been pulled up (they don't extend to the floor when standing). Since the beginning of his casting though almost all of these toes have been stretched so much that they aren't pulled up anymore. Even during his ortho treatments when he was a baby (basically the same treatments, just different doctor) we never saw these toes come down at all.<br />
<br />
Where there is great progress there is also great worry. The way that Kaleb's feet are positioned in the casts basically are in the shape of a ballerina standing on her toes (sorry..I'm no ballerina so the specific term alludes me). Because of the way that his feet are pointing and stretched it pulls his feet down. When the casts come off his feet it looks painful. Think about sitting in a specific position for a while and then getting up and moving that body part. But with Kaleb, his feet are always in this position and have been for months. When he got his 2nd pair of casts off, his feet were actually very bruised, black and blue. I was so worried. The doctor assured me it was okay but it's hard to see bruises like that on your child. Especially when your child can't communicate to you what it feels like, if they are in pain, if they can move their feet, ect.<br />
<br />
All in all things are good, especially when I think of the alternative and the very real possibility of Kaleb being able to walk. I cannot wait for this process to be over (the end of the surgeries...I can deal with the twice a year follow ups and then once a year). It's hard on all of us and I hate dragging Nolan along...he's been doing very well considering he's in the car for nearly 17 hours during a one way trip.<br />
<br />
Thanks to everyone that has donated to us or helped us in anyway. Especially if you have traveled with me...it's not easy. We appreciate each and everyone one of you!Erinhttp://www.blogger.com/profile/15085993190140465537noreply@blogger.com1tag:blogger.com,1999:blog-2987456537239626665.post-14824598236229940592013-03-21T21:23:00.001-04:002013-03-21T21:23:02.807-04:00Gas Gas Go AwayMy goodness. Today was rough. I think everything that Kaleb is going through just makes his "terrible twos" so much worse. And it's even worse with Kaleb because you can't communicate with him. He wants everything and he wants everything now. And when he doesn't get what he wants he screams and bangs his head (he's started punching himself now). It's so unbelievably frustrating. Hes always been so sweet and today was just...rough. You never know what will set him off. Lately he gets set off when he sees laptops, iPhones, sippy cups (anyone's), anything with a straw in it, random stuff. He just pitched a fit over a cd cover that I bought today. Aghhhh!<br />
<div>
<br /></div>
<div>
It's even worse because he hasn't been sleeping much since we got back from St. Louis (trip #2). His tummy issues are the root cause but we can only "manually burp" him through his feeding tube so much. Some of the gas is already in his intestines and that stuff you just can't get out through his tube. I'm definitely looking forward to April 1st when we can start another round of treatment for his Small Intestine Bacterial Overgrowth. At this point it's reminding me of life with a newborn and that is one thing I do not miss. </div>
<div>
<br /></div>
<div>
Well, Kaleb's screaming in his crib so we must go get him...g'nite. </div>
Erinhttp://www.blogger.com/profile/15085993190140465537noreply@blogger.com1tag:blogger.com,1999:blog-2987456537239626665.post-81557532437595598352013-02-22T00:29:00.000-05:002013-02-22T09:21:28.351-05:00Ready. Set. SOCCER.Nolan started soccer a few weeks ago. We were all so excited, he was excited. This is how soccer has gone so far...<br />
<br />
<strong><u>Week 1</u></strong>: Everyone's happy and meeting the coach and learning names. Nolan sits in the circle on the field for a while (with Dennis next to him). He cries some. He does a soccer exercise or two and I'm super pumped. Then he freaks out after the first 20 minutes and stops. He demands donuts if we want him to continue with practice. Being the awesome parents we are, we basically tell him we will give him every donut in the universe. He goes back to practice for a few minutes. Walks off the field, cries, runs away and doesn't return to practice. I hang my head and apologize to the coach. No donut was given. <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRJaEaL4ai6jGznSU_IM6cHZfgasAA1nt65hQklcI3-L2UuaOycLQIReghOXA5xAUKZNynssK1is3FM_XMfCfACTgbSq1O7of0RYGvWYq9TLtP9JzMKZQ5A-2s3YYeIRU6hEPpiwcq5DQ/s1600/njweek1ball.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRJaEaL4ai6jGznSU_IM6cHZfgasAA1nt65hQklcI3-L2UuaOycLQIReghOXA5xAUKZNynssK1is3FM_XMfCfACTgbSq1O7of0RYGvWYq9TLtP9JzMKZQ5A-2s3YYeIRU6hEPpiwcq5DQ/s640/njweek1ball.jpg" width="480" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
[<em>so happy</em>]</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgALwaHyWY2sBhYwGLZJfWyLugskMt_DSI6krEwyFuBpRIKIA7eEw1bvqFwnKB5DGEpuMM9N2zBmNh4yeqI12xy7_fqvrVYGR7clkYV41ebGRaf36FVBISjaSkTPF7yewnX9HRLL8cNLiQ/s1600/njsoccerrun.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="454" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgALwaHyWY2sBhYwGLZJfWyLugskMt_DSI6krEwyFuBpRIKIA7eEw1bvqFwnKB5DGEpuMM9N2zBmNh4yeqI12xy7_fqvrVYGR7clkYV41ebGRaf36FVBISjaSkTPF7yewnX9HRLL8cNLiQ/s640/njsoccerrun.jpg" width="640" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
[<em>right before the breakdown</em>]</div>
<br />
<br />
<strong><u>Week 2</u></strong>: The WORST. I'm pretty sure we started bribing him with donuts a day before his actual soccer practice. He was tired and cranky and hated everyone. He yelled at us, the couch, and his team mates, folded his arms over his chest, gave a stank face and walked off the field. He ran off more times than I can count. He said he was hungry and just wanted to go home. In all honesty, I got home and was a bit more upset than I probably should have been. It was like I was back in highschool..."you made me mad so I'm going to ignore you and stomp around". I already told you how awesome of a parent I am. <br />
<br />
I may or may not have thought about bringing a dozen donuts and waving them at him from the sidelines. <br />
<br />
<strong><u>Week 3</u></strong>: I was terrified. I made sure to bring tons of snacks and even bought him his very own special sports drink bottle thingy for their water breaks. Started off strong, as usual, had Dennis sit in the circle with him. He answered the coach's questions and when it came time for the practices he did them, almost every single one of them for the entire 45 minutes. He did have a few minor temper tantrums, most demanding donuts or coke in his water bottle (which we don't even drink so not sure where that demand came from). He carried his soccer ball in one hand and his water bottle in the other and as long as you didn't tell him he had to put his water bottle down things were pretty awesome. He made some goals and we screamed so loud for him and the hug at the end of practive was unlike any other hug. We took him to Red Robin for his fave macaroni and cheese and didn't even need any donuts or coke! <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipGDFRYIWW7CeNCKhCEWzoGoFuxKdkwUNGvbNK7_ug7_yGRhpgOvsEkuAHZgiLZ6jWgxdJ8CnDwWbZ4kHzNy67QrcWCi_fYUhAsM0DH1I7SYHWIiBJi63Luad4jhZ97UpInb5yDkwfsjc/s1600/njweek2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipGDFRYIWW7CeNCKhCEWzoGoFuxKdkwUNGvbNK7_ug7_yGRhpgOvsEkuAHZgiLZ6jWgxdJ8CnDwWbZ4kHzNy67QrcWCi_fYUhAsM0DH1I7SYHWIiBJi63Luad4jhZ97UpInb5yDkwfsjc/s640/njweek2.jpg" width="480" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
[<em>water bottle, check. ball, check</em>]</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhET6VA3J7I5qVOHBd2GCmsqFNADEhCWFIzOJPuwcNUf1yG3AI73ScH6EjDgTYPkTkgl2Y6neBJ922ETg7RNH0YGQLYGpPZzL8ckQiWU3Eq0QjV5XDbuUGN6WhL5mKbNRYlQTY9EMRNgFE/s1600/njweek2practice.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhET6VA3J7I5qVOHBd2GCmsqFNADEhCWFIzOJPuwcNUf1yG3AI73ScH6EjDgTYPkTkgl2Y6neBJ922ETg7RNH0YGQLYGpPZzL8ckQiWU3Eq0QjV5XDbuUGN6WhL5mKbNRYlQTY9EMRNgFE/s640/njweek2practice.jpg" width="480" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
[<em>analyzing the contents of his water bottle, gatorade was not good enough for him</em>]</div>
<br />
<br />
It should be noted: Hours after soccer practice Nolan was moaning and crying on the floor in my hall way at 1:30am with a 103.5 fever. Some may argue that he was behaving himself because he was sick, I on the other hand chose to think that he really thought about his previous actions at soccer and decided that he needed to be respectful to all involved and give it a go. <br />
<br />
<em><strong>[sorry for the overly long post about freaking soccer]</strong></em>Erinhttp://www.blogger.com/profile/15085993190140465537noreply@blogger.com0tag:blogger.com,1999:blog-2987456537239626665.post-4150349751817369062013-01-23T20:46:00.001-05:002013-01-23T20:55:05.420-05:00The Package TourJust to show you how bat shit crazy I am....<br />
<br />
Last night I found out about the Package Tour (98 degrees, BSB, and Boys II Men tour). I was so excited and told a friend of mine we were going, no <b>ifs</b> <b>ands</b> or <b>buts</b>. I looked up the tickets, found the date in my city, and was ready for presale in a few days. I was so excited to go to a concert, something so dumb but I really need to get out of the house and be part of mindless things. Really..it's for my sanity.<br />
<br />
Then shortly after all my excited a friend reminded me that I will be in Chicago on that date. We are going to Chicago in June for a big meet up with our Trisomy 9 family...it will be like a huge family reunion. This is great and all but I was so excited for a night away from all of this crap that we go through on a daily basis. So what did I do?<br />
<br />
I sobbed. What the hell is wrong with me? I couldn't even catch my breath during it all. I'm obviously not of sound body and mind...because seriously I cried over a concert. Obviously the meeting in Chicago is insanely more important than a concert but it's the meaning of it all. Trisomy consumes me. Everything I do or think has something that can be tied back to my son's Trisomy diagnosis.<br />
<br />
<i><b>When is our next surgery? What test results have I not gotten back yet? Who is going to watch Nolan? What are we going to have for dinner (we try to eat Paleo so that Kaleb''s severe GI issues will decrease)? I need to make a list of medicines, questions for any given doctor (reminds me I need to do this for tomorrow's appointment), emergency numbers, etc. What is this bump on Kaleb's body, why is it there, will we be in the hospital soon because of the bump? Does Kaleb feel warm? Does Nolan feel warm...because if so I need to keep him from Kaleb. What do I need to disinfect today? How did Kaleb's poop look today? What day of the week is it so I know what medicines to give? What surgery will I have my son go through with his feet. Will we be going to St. Louis? Do I trust his doctors? What toy should I get Kaleb for birthday/xmas/etc because it has to be therapy related.</b></i><br />
<br />
January is trying to break us and for now it's winning.<br />
<br />
And btw, if you are my friend on FB and go to the concert and then you post photos of the concert. You will probably be un-friended. ;)<br />
<br />
<div style="padding-bottom: 2px;">
<div style="line-height: 0px;">
<a href="http://pinterest.com/pin/563161128373746604/" target="_blank"><img border="0" height="816" src="http://media-cache-ec4.pinterest.com/upload/75083518759502281_MEdUtT2Y_c.jpg" width="600" /></a></div>
<div style="line-height: 0px;">
<br /></div>
<div style="line-height: 0px;">
<br /></div>
<div style="line-height: 0px;">
<br /></div>
<div style="line-height: 0px;">
<br /></div>
<span style="line-height: 0px;"></span><br />
<div style="padding-bottom: 2px;">
<div style="line-height: 0px;">
<span style="line-height: 0px;"><a href="http://pinterest.com/pin/454089574898442378/" target="_blank"><img border="0" height="531" src="http://media-cache-ec3.pinterest.com/upload/142074563215393533_IgE02exu_c.jpg" width="375" /></a></span><br />
<br />
<br />
<br />
<br />
<br /></div>
<div style="line-height: 0px;">
<br /></div>
<span style="line-height: 0px;"></span><br />
<div style="line-height: 0px; padding-bottom: 2px;">
<span style="line-height: 0px;"><a href="http://pinterest.com/pin/18014467231350399/" target="_blank"><img border="0" height="295" src="http://media-cache-ec5.pinterest.com/upload/41306521552305478_WBAzkHqy_c.jpg" width="420" /></a></span></div>
<span style="line-height: 0px;">
<div style="float: left; padding-bottom: 0px; padding-top: 0px;">
<div style="color: #76838b; font-size: 10px;">
Source: <a href="http://www.someecards.com/usercards/viewcard/266dd91179b2291c387b6fb28b46f529" style="color: #76838b; font-size: 10px; text-decoration: underline;">someecards.com</a> via <a href="http://pinterest.com/hfoley21/" style="color: #76838b; font-size: 10px; text-decoration: underline;" target="_blank">Heather</a> on <a href="http://pinterest.com/" style="color: #76838b; text-decoration: underline;" target="_blank">Pinterest</a></div>
</div>
</span></div>
<span style="line-height: 0px;">
</span>
<div style="float: left; padding-bottom: 0px; padding-top: 0px;">
<div style="color: #76838b; font-size: 10px;">
<span style="line-height: 0px;">Source: <a href="http://designspiration.net/image/114099/" style="color: #76838b; font-size: 10px; text-decoration: underline;">designspiration.net</a> via <a href="http://pinterest.com/bluebutterfly02/" style="color: #76838b; font-size: 10px; text-decoration: underline;" target="_blank">Alex</a> on <a href="http://pinterest.com/" style="color: #76838b; text-decoration: underline;" target="_blank">Pinterest</a></span></div>
</div>
<span style="line-height: 0px;">
</span></div>
<div style="float: left; padding-bottom: 0px; padding-top: 0px;">
<div style="color: #76838b; font-size: 10px;">
Source: <a href="http://www.dumpaday.com/random-pictures/funny-pictures/funny-pictures-of-the-day-46-pics-2/" style="color: #76838b; font-size: 10px; text-decoration: underline;">dumpaday.com</a> via <a href="http://pinterest.com/jennysue727/" style="color: #76838b; font-size: 10px; text-decoration: underline;" target="_blank">Jennifer</a> on <a href="http://pinterest.com/" style="color: #76838b; text-decoration: underline;" target="_blank">Pinterest</a></div>
</div>
Erinhttp://www.blogger.com/profile/15085993190140465537noreply@blogger.com0tag:blogger.com,1999:blog-2987456537239626665.post-80193426281642784572013-01-22T21:01:00.000-05:002013-01-22T21:06:03.355-05:00What's a Mother to do? I've been wanting to blog about our recent trip to Shriner's but I really didn't know how to react. I cried for a while and was really upset...so upset I really haven't talked to many people about it. Now I'm ready to tackle this new hurdle just like we have all the other ones....we can do this!<br />
<br />
<b>Here's a little history first...</b><br />
<i><b>*</b>Kaleb was born with severe foot deformities (<b>shocking</b>...I know)</i><br />
<i>*his right foot had dislocated bones and was diagnosed with "congenital vertical talus" (CVT)</i><br />
<i><b>*</b>his left foot did not have any dislocations but was still very "deformed"</i><br />
<i><b>*</b>Kaleb was in serial casting for 6 months to help turn them back the correct way.</i><br />
<i><b>*</b>After casting Kaleb had surgery on his right foot where his achilles was cut and a pin was put in through a minor incision to hold bones together. This was when he was 6 months old. This was to fix his CVT.</i><br />
<i><b>*</b>he was given ankle braces after the surgery but told to only wear them when he began weight bearing (almost a year later).</i><br />
<i><b>*</b>Kaleb had another surgery on both legs to lengthen his tendons to release his feet down.</i><br />
<i><b>*</b>since his tendon lengthening his feet have gotten a lot better but his left foot has been the worst so when he stands up or cruises along something he is walking on the inside of his leg/ankle. His right foot (the one with CVT) has been doing pretty well.</i><br />
<br />
So we go to Shriner's for a second opinion on his left foot to see if anything could be done to correct his problem with it. Kaleb had x-rays done and then we met with their Ortho doctor. He showed us the x-ray of his feet and damn...it looked like his x-rays from when he was born. His left foot's bones are actually in line and doing really well (despite our concerns and his PT's concerns). Then we look at the right foot which was supposed to have been repaired when he was 6 months old. He says, "his right foot still has CVT".<br />
<br />
I told him, "but that's the foot that he had surgery on". I thought maybe they got the feet switched around on the x-ray..but nope. It was clear as day. His bones in his right foot were all jumbled, like a tangled mess of developing bones. This isn't something that can just be fixed with casting or braces or therapy. It has to be fixed surgically...again. It's not an optional surgery.<br />
<br />
I was devastated. As soon as the nurses and doctor left the room I just cried...trying my hardest to keep the tears in because I really hate doctors seeing me break down. I couldn't wait to get in the car because I needed to cry, I had to cry.<br />
<br />
Now what do we do? The doctor told us there are two types of surgeries to fix CVT. One of them is new and minimally invasive which is what Kaleb had done at first. This was created by a doctor in St. Louis who is now a pioneer in the world of CVT and travels all around the world to teach other orthos how to do this surgery. The other surgery is a major surgery requiring two large incisions to put all his bones and tendons back together with several pins and around 4 months of being in casts. We agreed to do the surgery and were given paper work so we could get clearance from FIVE of Kaleb's specialists (to allow him to have surgery given his other systems are in good shape).<br />
<br />
I left Shriner's planning out my week and how I was going to go to five different doctor's offices and make sure they fax their paperwork back to Shriners, along with planning a birthday party and many other doctor appointments and testing.<br />
<br />
Then I posted in a CVT group on FB about what happened. As I was talking with parents on there I found out that our Ortho did not follow the exact steps for this newer minimally invasive surgery. Children are supposed to be put into braces with a bar across for 23 hours a day for up to 2 years. This was never done.<br />
<br />
I trusted our Ortho and never researched what he was telling me when Kaleb was 6 months old because I had no reason to not believe him. Why would you follow a new practice but not complete the steps? I also talked with others who's children's first surgery did not work either and most of them traveled to St. Louis to be worked on by the pioneer of this new technique. And to my surprise, he is part of that FB group and he has reached out to me about reviewing Kaleb's x-rays and treating him.<br />
<br />
What would that mean? Multiple trips to St. Louis and years with a bar between his feet.<br />
<br />
I still have not decided what we will do. I still haven't even given Kaleb's doctors their paperwork for clearance. Either way Kaleb's development will be hurt because of constant casting or bracing. He's been doing so well...standing and cruising along couches and benches.<br />
<br />
It's all so scary, my son will be able to walk and now I have to make the best decision to make that as easy as possible for him because...lets be honest...he already has factors working against him in order to walk. If we do the major surgery he will have large incisions and we now know that Kaleb develops larges keloids on his incisions (think of scar tissue bubbling up...that's what it looks like). And he already has these keloids down his stomach and on both of his legs.<br />
<br />
What's a mother to do?<br />
<br />Erinhttp://www.blogger.com/profile/15085993190140465537noreply@blogger.com3tag:blogger.com,1999:blog-2987456537239626665.post-79487658520727191032013-01-10T13:31:00.000-05:002013-01-10T13:31:08.850-05:00Adenosine Challenge ::rant::<br />
This morning was Kaleb's "Adenosine Challenge" which happened in the Hybrid Cath Lab at our children's hospital. Everything went really well, no hitches...perfect. He went right to sleep and only needed to be put to sleep with the mask because it was such a quick test.<br />
<br />
Everything was perfect, even down to the fact that they have basically been able to rule out Wolff Parkinson White syndrome. It's not 100% but enough to proceed with further neuro testing and possible medications for seizures.<br />
<br />
I'd like to think everything is perfect...but it's not. I'm so worn down and tired of it all. Trisomy is hard...it affects everything and changes your life completely. I'm sick of not having any answers and having doctors tell me they have absolutely no idea what is going on. I'm really sick of every test coming back negative. I hate giving doctors Kaleb's medical history and them asking "well what is his blood disorder called" and I really hate having to tell them, "<i><b>I don't know because the doctors have never seen it before</b></i>". I'm especially upset at doctors writing in their notes concerns for something and not talking to us about it (apparently TWO cardiologists wrote in their notes that they had concerns for WPW well over a year ago but never talked to us about this). I'm done telling people that I'm glad a test was negative, or that something wrong wasn't found.<br />
<br />
<center>
<div style="line-height: 0px; padding-bottom: 2px;">
<a href="http://pinterest.com/pin/274227064782114434/" target="_blank"><img border="0" height="412" src="http://media-cache-ec3.pinterest.com/upload/274227064782114434_LktcboKi_c.jpg" width="600" /></a></div>
<div style="float: left; padding-bottom: 0px; padding-top: 0px;">
<div style="color: #76838b; font-size: 10px;">
Source: <a href="http://www.oprah.com/spirit/10-Lessons-of-Love-and-Light-from-Elie-Wiesel_1/8" style="color: #76838b; font-size: 10px; text-decoration: underline;">oprah.com</a> via <a href="http://pinterest.com/laishaskincare/" style="color: #76838b; font-size: 10px; text-decoration: underline;" target="_blank">La Isha</a> on <a href="http://pinterest.com/" style="color: #76838b; text-decoration: underline;" target="_blank">Pinterest</a></div>
</div>
</center>
<br />
<br />
If you want me to be honest, I wanted my son to have WPW and I don't really care if that upsets you or shocks people. I'm tired of not having answers. WPW is at least able to be completely fixed in a relatively easy way. The alternative for Kaleb...is not so easy. Seizures are difficult, you never know when they are going to hit..constantly on your toes. Often they start out as simple seizures and progress into worse ones over time. There is no cure for this, only medications. Which, for the medications to work, Kaleb's systems have to be in tip top shape...and lets be honest, they aren't.<br />
<br />
I'm tired of hearing "it's going to be okay", "everything happens for a reason", etc. I'm tired of certain people in our lives not being there for us...or hell...not even calling us after something big happens to Kaleb to check on him. I am so tired of it. I'm sick of endless medical bills, doctors appointments, hospitalizations, therapies, etc etc etc. Please don't think if you have said the above things to us that we specifically are upset with you, we aren't, I mean honestly...what else do you say to someone in this situation? <i><b>"Sucks to be you!"?? </b></i><br />
<br />
Please, go ahead and judge me, try to tell me what I'm doing is wrong and I need to do something different, be my guest, but please know that does not help our situation or Kaleb at all.<br />
<br />
<center>
<div style="line-height: 0px; padding-bottom: 2px;">
<a href="http://pinterest.com/pin/24206916719025949/" target="_blank"><img border="0" height="717" src="http://media-cache-ec2.pinterest.com/upload/8092474300127925_932EEDFP_c.jpg" width="500" /></a></div>
<div style="float: left; padding-bottom: 0px; padding-top: 0px;">
<div style="color: #76838b; font-size: 10px;">
Source: <a href="http://weheartit.com/entry/19939632" style="color: #76838b; font-size: 10px; text-decoration: underline;">weheartit.com</a> via <a href="http://pinterest.com/heidisiens/" style="color: #76838b; font-size: 10px; text-decoration: underline;" target="_blank">Heidi</a> on <a href="http://pinterest.com/" style="color: #76838b; text-decoration: underline;" target="_blank">Pinterest</a></div>
</div>
</center>
<br />
<br />
I am mad, angry, frustrated, sad, and pissed off FOR my son. He deserves the best...the best medical care, the best people in his life, the best answers, the best everything and when he doesn't get that...I'm not happy. Of course I'm not going to give up on finding answers, but seriously...put yourself in my shoes, or my husband's shoes. <i><b>It's not easy... </b></i><br />
<i><b><br /></b></i>
<b><i>We just want answers and for our boy to be okay. </i></b><br />
<b><i><br /></i></b>
<center>
<div style="line-height: 0px; padding-bottom: 2px;">
<a href="http://pinterest.com/pin/236790892879710047/" target="_blank"><img border="0" height="307" src="http://media-cache-lt0.pinterest.com/upload/97249673174501959_wGodpodC_c.jpg" width="306" /></a></div>
<div style="float: left; padding-bottom: 0px; padding-top: 0px;">
<div style="color: #76838b; font-size: 10px;">
Source: <a href="http://www.melbgirl.com.au/2012/08/21/tuesday-shoesday-8/" style="color: #76838b; font-size: 10px; text-decoration: underline;">melbgirl.com.au</a> via <a href="http://pinterest.com/wed69/" style="color: #76838b; font-size: 10px; text-decoration: underline;" target="_blank">Virginia</a> on <a href="http://pinterest.com/" style="color: #76838b; text-decoration: underline;" target="_blank">Pinterest</a></div>
</div>
</center>
<br />
<br />
We may have a lot of "wants" but please know that we are entirely aware of the wonderful things we have. We have a happy family with lots of laughs and fun times. We are a very close family, the 4 of us. We are happy every single day and thankful for all of the wonderful things in our life. So please don't think I'm being ungrateful. I just don't want my son to have to continue to go through difficult and risky testing to get another negative or "normal" result. <i><b>At what point do you stop and say enough is enough?</b></i> ::big sigh::<br />
<br />
And with that I put on my happy face and continue through my day as if everything is perfect. This year I will focus on being a better person, not letting people or circumstances (whom we cannot control) bother me so much, and be grateful for the friends and family that I do have in my life.<br />
<br />
<center>
<div style="line-height: 0px; padding-bottom: 2px;">
<a href="http://pinterest.com/pin/64317100900259430/" target="_blank"><img border="0" height="517" src="http://media-cache-ec3.pinterest.com/upload/39828777924058653_TR1IHvei_c.jpg" width="344" /></a></div>
<div style="float: left; padding-bottom: 0px; padding-top: 0px;">
<div style="color: #76838b; font-size: 10px;">
Source: <a href="http://www.hiyapapaya.com/" style="color: #76838b; font-size: 10px; text-decoration: underline;">hiyapapaya.com</a> via <a href="http://pinterest.com/whitneyelese/" style="color: #76838b; font-size: 10px; text-decoration: underline;" target="_blank">Whitney</a> on <a href="http://pinterest.com/" style="color: #76838b; text-decoration: underline;" target="_blank">Pinterest</a></div>
</div>
</center>
<br />
<br />
<span style="font-family: Trebuchet MS, sans-serif;">Love, </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Erin</span><br />
<br />
Erinhttp://www.blogger.com/profile/15085993190140465537noreply@blogger.com0tag:blogger.com,1999:blog-2987456537239626665.post-62835652701611881412012-12-17T01:01:00.000-05:002012-12-17T01:01:59.193-05:00The day I thought my child was going to dieI need to write this while everything is fresh in my mind, mostly for myself. I don't ever want to forget this day, no matter how horrible and gut wrenching it was.<br />
<br />
This morning started off normal like every day. I made breakfast for myself and Nolan (really..it was a donut from the night before), and started Kaleb's tube feeding in his high chair. I sat at the dining table next to Kaleb, ate my cottage cheese while he had his g-tube feeding and some baby food by mouth. Everything was fine, Kaleb was happy...we were all happy, my husband was at work. Kaleb blew through baby food pouches and then I gave him some puffs. After that Nolan brought me what was left of his donut. I pulled some very small pieces off of the inside and fed that to Kaleb, nothing out of the ordinary. He had a few pieces and was fine. I gave him two more small pieces and continued reading on my laptop, about mental health in America (due to the recent shooting in Newtown, CT). I turned to see if Kaleb needed more food and he wasn't breathing. He chokes on food more than most kids but he always recovers, he coughs and cries and I freak out and think about calling 911...but everything is always fine.<br />
<br />
This time was different. His head was hanging and his face was pale and mottled. I grabbed him and he didn't respond. I picked him up some (he was still attached to his feeding tube so I couldn't take him far) and he still didn't respond. I panicked. I unattached him from his tube (while it was still running...formula all over the place now) and ran with him in my arms to my phone. Snatched my phone up and started hitting his back, still no response...no air...no nothing. His eyes were open and looking at me but that was it. I tried to put him over my arm to hit his back more but he was so limp and heavy I couldn't do it for long. I called 911. While on the phone I put him stomach down on the back of my couch and kept hitting his back and shaking him. The operator transferred me to our local FD and that's when Kaleb came back to me. He acted as if nothing happened. He never coughed, took a deep breath, or cried. I was shaking and hysterically crying with the FD. They asked my nearest cross street and I blanked...I had no idea where I lived. He gave me options of cross streets and I was able to basically answer by multiple choice. I put Kaleb down for a second to put one of my dogs up and Kaleb crawled and acted fine. After I put my dog up I didn't let go of Kaleb. My 3 year old and I sat outside waiting for the FD, and they came with bright lights within 10 minutes.<br />
<br />
At their arrival the firefighters and EMTs were more worried about me in the moment than Kaleb. They made me sit down in the living room and all I kept telling them was how sorry I was for my house being dirty. Who knows what I was thinking. They ran an EKG and o2 sats on Kaleb. He was basically fine...though they could only get his o2 up to 91/92...normal is 100. They asked me if I wanted him transported to the hospital...I fought with that. I said no, he was acting fine. They made me sign a paper stating that I didn't want them to transport him and I felt like an awful mother.<br />
<br />
As soon as they left I called Kaleb's pulmonologist hoping it would be his actual doctor and not just an on call doctor we didn't know. Of course it was a doctor we didn't know. She was rude and said I should have called 911 before her. Okay, obviously you have a problem reading the history that I just gave to your operator. She told me to take him right away to the hospital.<br />
<br />
I felt awful, why didn't I have them take him? I cried for my son and how terrible of a mother he had. Honestly, I know I'm a good mom, but in the moment I felt awful.<br />
<br />
My husband rushed home and we took him to the hospital. While there the idea of this possibly not being a choking event came up, I didn't think of that. There has been questionable times of seizures though we have never had any results from his EEGS.<br />
<br />
There's no way to know what happened probably, they have run so many tests and they all come back negative....<br />
<br />
CT-still all the previous problems but fluid on his brain has not increased<br />
urine cath- negaive<br />
drug test- negative<br />
RSV- negative<br />
lung xray- negative<br />
CBC- all levels were normal<br />
EKG- possible arrhythmia...depends on what doctor you ask<br />
<br />
You may have noticed that I said they gave him a drug test. Yes, without us knowing it...they drug tested him. Since I was in the child protection field I understand this in most cases, but they know him. They know he has a huge medical history. No...I did not drug my child and cause him to stop breathing. Because...lets be honest, they don't think he is on drugs. <br />
<br />
The doctors spoke with Kaleb's neurologist and he agreed that Kaleb needed to have an EEG (measures seizure activity) while in the hospital instead of the scheduled one we have for January. They are actually going to do a 24 hour EEG so we will be in the hospital a couple of days. He will also be getting a swallow study, which he is due for...in all honesty I dread this more than anything. Finding out that Kaleb could no longer drink liquids in May was a huge blow to all of us...Kaleb loved his bottles. For months we had to hide food from him and couldn't eat in front of him. Today even if we had a snack...we had to hide from him. He has a fierce love for food and it would be a huge blow if they found he was aspirating solids. A part of me already knows what they will find and they will probably tell us he can no longer eat anything by mouth, but I still have to have hope.<br />
<br />
Tonight I am at home with Nolan and the dogs and Dennis is at the hospital with Kaleb. I finally stopped crying this afternoon when I kept having to tell the story over and over again to doctors, nurses, techs, and even previous doctors that had once had Kaleb under their care and they were concerned so they came to visit. But as soon as I walked into this house it all came back. I just cried...and tried to hide it from Nolan. I was planning on coming home and going straight to bed. Instead...I cleaned. I did laundry and cleaned...took the trash out...everything. I even cleaned the toilets and cleaned each tile in my kitchen, on my hands and knees with a wet cloth. I don't know why I did that...maybe I'm crazy...especially at midnight.<br />
<br />
Nolan: What are you doing mama?<br />
Me: Cleaning and doing laundry<br />
Nolan: Do you need help?<br />
Me: No baby, just keep watching your movie but thank you.<br />
<br />
I even cleaned the outer surface of each of our cabinets. Again...Nolan was confused.<br />
<br />
Nolan: Mama, what are you doing?<br />
Me: I'm cleaning the cabinets.<br />
Nolan: Why?<br />
Me: I don't know love...because they are dirty?<br />
<br />
And really I don't know why. I'm not the clean type...but I needed to clean tonight...this morning. I even found a pool of formula in Kaleb's highchair...of course...I left his feeding pump on when I thought my world was falling out from under me.<br />
<br />
I'll keep everyone updated and write even more later...tomorrow...there's more I need to get out. Writing is like therapy to me. Thanks to everyone for the prayers and the friends and neighbors that have offered and helped with Nolan. I don't know what I would do without these people.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZT5kqQc7zzyzV1o4U1kMgLYlpS9EDL_p4e8y-J1mjWrhqhuVBSvNvGwgyL0j0ZAHQYRx_27wEG_iS4la5nccXf6wlxc0OyBNDJ4hFKke7uX528fSC4kIKCAxChwsDVy7NyDir2vAUsk4/s1600/2roomboard.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZT5kqQc7zzyzV1o4U1kMgLYlpS9EDL_p4e8y-J1mjWrhqhuVBSvNvGwgyL0j0ZAHQYRx_27wEG_iS4la5nccXf6wlxc0OyBNDJ4hFKke7uX528fSC4kIKCAxChwsDVy7NyDir2vAUsk4/s640/2roomboard.jpg" width="480" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
Notice the writing next to, "Today's plan". I thought this was funny...so simple...yet something people take for granted every single day. </div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4-Lgi9mXhYD9eSVnQhDY5fiBcdzyLG9eofmmmDJOVa0zgz8FkCUk7lamYcrkPT9nNzXAIFjFx9tDJe-SBIccwnzPBhJ_9FMUZUwklqlzF_3y2Qc41F7jpjEB71-JbjZSeUPbxvax1hq4/s1600/edxray.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4-Lgi9mXhYD9eSVnQhDY5fiBcdzyLG9eofmmmDJOVa0zgz8FkCUk7lamYcrkPT9nNzXAIFjFx9tDJe-SBIccwnzPBhJ_9FMUZUwklqlzF_3y2Qc41F7jpjEB71-JbjZSeUPbxvax1hq4/s640/edxray.jpg" width="480" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
ED fun</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmpj0O_ufrrFtgeqCsKq6HD1cVOU5WI1kzeoWbJvoHLcz6dtQ8C68OQpmWQtDARJtwm0rE0D2wE24jy9sMbQ9g-M1eLMYeAKldOe8dP0brgjCwuaRAOJjPiVodIRsrM_ns6Ht9sxy5vBc/s1600/njeating.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmpj0O_ufrrFtgeqCsKq6HD1cVOU5WI1kzeoWbJvoHLcz6dtQ8C68OQpmWQtDARJtwm0rE0D2wE24jy9sMbQ9g-M1eLMYeAKldOe8dP0brgjCwuaRAOJjPiVodIRsrM_ns6Ht9sxy5vBc/s640/njeating.jpg" width="480" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
Nolan...eating crackers. He had to hide from Kaleb so he turned away to the hall so baby didn't see. Nolan...please know you are the best big brother ever. </div>
<br />Erinhttp://www.blogger.com/profile/15085993190140465537noreply@blogger.com1tag:blogger.com,1999:blog-2987456537239626665.post-16035022723987891212012-12-12T14:51:00.000-05:002012-12-12T14:51:22.026-05:00Life SaverAs most know, Kaleb is feeding tube dependent for all nutritional needs. He can eat some foods by mouth that are thicker, however if they are too thick he will choke and on two occasions recently he stopped breathing for a short time. And I'd rather not experience that <b><span style="font-size: large;">ever again</span></b>.<br />
<br />
Kaleb has always loved food and dearly misses his bottles. He has finally calmed down so he doesn't become hysterical every time he sees a baby or kid with a bottle. Thank goodness, that was a rough time!<br />
<br />
With everything he has gone through he has shown how smart he is. He knows that his formula that used to be in his bottle, is now in his tube that hooks up directly to his stomach. Over the months that he has been g-tube (gastrostomy tube) dependent he has learned different ways to get the formula out of the tube and in to his mouth, which is a no no for Kaleb. He has learned he can open his med port (the hole where you put all medications) and suck out what's in the tube. Also disturbing is when there is no flow into his stomach he can open the tube and suck out stomach contents. Yeah...it's gross.<br />
<br />
The past couple of weeks have been especially difficult because he has learned how to detach a part of the tube by biting on it a certain way and there is no cover for this area on the tube. We have tried everything. Tying blankets around the tube, tying wipes around certain parts of the tube, and even went to Lowes and bought cable keeper cords which fit nicely over the medical tubing...but my lovely child has figured out how to even pull that off. I'm at a loss for what to do.<br />
<br />
Because of this Kaleb can only be fed by tube when I am right next to him to stop his chewing. Feeding him in the car was awesome but I can't anymore because most of the roads I drive on are highways and it's happened a few times where I have to pull over on the highway with cars zipping past us to I can stop his flow and clean up the mess.<br />
<br />
The annoying part of having to be right next to him during all of his feeds is that his feeds take <b><u>ONE HOUR</u></b> to finish. His GI doctor wants him to have <b><u>FOUR</u></b> feeds a day...that is<b><u> FOUR hours</u></b> out of our day. Not to mention I have to keep his hands busy...I'm running out of things to do with him during these hours. What the GI wants really doesn't happen, ever...with the amount of time that has to be in between feeds and the length of the feeds...we just don't have enough time in the day. And don't even get me started on continuous feeds at night...not even going there. He does however get as much nutritious food by mouth that I can safely get him to eat, as possible.<br />
<br />
Today I took a chance and tube fed him in the car...really I was desperate because he really needed to eat. So I tried to hide the cords as well as I can and even covered them with the cable covers from Lowes to make it harder for him to chew it...and then I had to pull over.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEib-09Mj6Qha8eGONIHvMHxUD0hkdDqMzAZ0-4QA1Gf-PTOaw72HxePz2dUxGfcK1B5zXT-rzPOSxOZy_1U-J1R8PT9NZyWT5Bb7AbXgyKLeKozQdlzTPr2chhIOuAO_AeAFpdyYf9Pkbg/s1600/kcar.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEib-09Mj6Qha8eGONIHvMHxUD0hkdDqMzAZ0-4QA1Gf-PTOaw72HxePz2dUxGfcK1B5zXT-rzPOSxOZy_1U-J1R8PT9NZyWT5Bb7AbXgyKLeKozQdlzTPr2chhIOuAO_AeAFpdyYf9Pkbg/s640/kcar.jpg" width="480" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
Pulled the cable covers off, coiled up the tubing....commence chewing. </div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvbeX6IguxszgNTXUG_6uu4cKLTtxOQORGAvPXpxD1N40e9ceQRE4YiOsfRNhp0meHKMPfq6Ue10dVNedJy62Urj4S5dmO2v-mN1suGPjUr4UeVMrJtt905J5fhCCDTrVcsmUl9P24tKU/s1600/kcar2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvbeX6IguxszgNTXUG_6uu4cKLTtxOQORGAvPXpxD1N40e9ceQRE4YiOsfRNhp0meHKMPfq6Ue10dVNedJy62Urj4S5dmO2v-mN1suGPjUr4UeVMrJtt905J5fhCCDTrVcsmUl9P24tKU/s640/kcar2.jpg" width="480" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
How much tubing fits in Kaleb's mouth? We are going for a record here. </div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiD_i_f0jD_lvW6nBs7NuwMrpZca_ImTAUjZadG4RdvDgJlL-0lR6-hBU4h9epvHwlUs4LONMBOs32tbTRhM96m2ARagLD0negm40kX3J6O3THjAZJ8amxMRipUkLU39rsjmaUKTKdXECg/s1600/kcar3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiD_i_f0jD_lvW6nBs7NuwMrpZca_ImTAUjZadG4RdvDgJlL-0lR6-hBU4h9epvHwlUs4LONMBOs32tbTRhM96m2ARagLD0negm40kX3J6O3THjAZJ8amxMRipUkLU39rsjmaUKTKdXECg/s640/kcar3.jpg" width="480" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
Sliding the tubing through his teeth...just like floss. Really, really thick floss. </div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyvL9Dw_4Gj14MeP-allfZShYrZ6bEhwRKG_veUS4_1X_mT2rHfU0AuL6kgklwHdSJEFCphwfbJLyvltXCAtLeG_Lu2XQFBW1RMDnRBI8r5q3AMAPJbHL_y_a02fcBIjsmYwSn76iIecs/s1600/kcar4.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyvL9Dw_4Gj14MeP-allfZShYrZ6bEhwRKG_veUS4_1X_mT2rHfU0AuL6kgklwHdSJEFCphwfbJLyvltXCAtLeG_Lu2XQFBW1RMDnRBI8r5q3AMAPJbHL_y_a02fcBIjsmYwSn76iIecs/s640/kcar4.jpg" width="480" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
Oh and now we have dance moves with the tubing. </div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
I do believe his tubing is his best friend. <i><b>Sigh....</b></i></div>
<br />Erinhttp://www.blogger.com/profile/15085993190140465537noreply@blogger.com1tag:blogger.com,1999:blog-2987456537239626665.post-71585545691093314202012-12-11T22:14:00.000-05:002012-12-11T22:18:59.585-05:00No sleep for the weakAfter about 45 minutes of never ending screams I had to wave my white flag. But I told Kaleb that if he was going to stay up, then I was going to take pictures of him...and lots of them.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpWPrREvdWPM-4np0kxz6MyNa7av_RkFXYhPUiNwwr7SeGRWdMcDOwNO3uPjjDuLrOhLD6DFaiEakLfQ0w8Fhrllp5OIcxY9Awzl1SQG175EERlQfFVf5rBMVblBv3VnfmDnY6s3gDQzE/s1600/IMG_0740.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpWPrREvdWPM-4np0kxz6MyNa7av_RkFXYhPUiNwwr7SeGRWdMcDOwNO3uPjjDuLrOhLD6DFaiEakLfQ0w8Fhrllp5OIcxY9Awzl1SQG175EERlQfFVf5rBMVblBv3VnfmDnY6s3gDQzE/s640/IMG_0740.JPG" width="515" /></a></div>
<br />
<div style="text-align: center;">
Baby blues...</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiDLybncB0McKH-90rsoBjKXut8TUgZ-XEWATCEYQUFuc5mWUA5P6GYINu3ZNrBSXD4Z2xwS_-dDIcFYxqsWH8BfKyBPAWjhxIK1Se0LKtRNWKDTKEnSUKGKh0lCSQ7kzc_mw0Ka2J_UE/s1600/IMG_0742.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="483" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiDLybncB0McKH-90rsoBjKXut8TUgZ-XEWATCEYQUFuc5mWUA5P6GYINu3ZNrBSXD4Z2xwS_-dDIcFYxqsWH8BfKyBPAWjhxIK1Se0LKtRNWKDTKEnSUKGKh0lCSQ7kzc_mw0Ka2J_UE/s640/IMG_0742.JPG" width="640" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
Who will I hit with the remote first? </div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghY1KuqYBCGKxNC7rVOrEJ4pTVRCdSkkCOFfcxkmgQBmZlO-hfYdy8gskc72VK7VbtTm4R8yWTdC7mXe7ldTBrU1HCTLiWKq50N_Wh0CpW-cW1U6LzYYFxMuf1NpVCZspPfIQwYbKURdM/s1600/IMG_0745.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="425" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghY1KuqYBCGKxNC7rVOrEJ4pTVRCdSkkCOFfcxkmgQBmZlO-hfYdy8gskc72VK7VbtTm4R8yWTdC7mXe7ldTBrU1HCTLiWKq50N_Wh0CpW-cW1U6LzYYFxMuf1NpVCZspPfIQwYbKURdM/s640/IMG_0745.JPG" width="640" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
We are learning to not hit the doggy with the remote...be gentle.</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicyd2oKCtOM5SpicR4mUby-GnNFYzS4XOOjXNdugUMlwEtGkmtHKQT68hmPLlgeepwLnpLJa21X0eZG4nyZ5gj4UndwYr_3PAZb_tIr9cMmtdgrriLH5oYXjufzAdJ9B1ox5HZg5lSF5s/s1600/IMG_0755.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicyd2oKCtOM5SpicR4mUby-GnNFYzS4XOOjXNdugUMlwEtGkmtHKQT68hmPLlgeepwLnpLJa21X0eZG4nyZ5gj4UndwYr_3PAZb_tIr9cMmtdgrriLH5oYXjufzAdJ9B1ox5HZg5lSF5s/s640/IMG_0755.JPG" width="640" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
Only posted this because it's a little funny that I was taking a picture of our stockings when the Raising Hope family were wearing theirs, festive I say! </div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7Hgy67Yi_EoTD9Au-Q3OQ940CMZdpko-OWAZh6ExkwXm0LiwS-qR5_RKEMOJKDE2u6TepkOKRh4Z_D8BMsVMgxKmjPVTqviPt2ct6XZJFIb0qpT7bvo5t_aG0qcMxqenphajgNFQoWq4/s1600/IMG_0757.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="425" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7Hgy67Yi_EoTD9Au-Q3OQ940CMZdpko-OWAZh6ExkwXm0LiwS-qR5_RKEMOJKDE2u6TepkOKRh4Z_D8BMsVMgxKmjPVTqviPt2ct6XZJFIb0qpT7bvo5t_aG0qcMxqenphajgNFQoWq4/s640/IMG_0757.JPG" width="640" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
Before I got hit in the head for the first time tonight with a remote....</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBwfSX2UaPvSKqDlZeCMUX0RLhyphenhyphenmzUqehyphenhyphenSR0cpLQTRS6GPv42yXpD0Y1quxSXjAReD37DqbjpD6AnXyJaiDC09_SKu2cfVEOaBQWmV0CgbSLMJ6p3wtI2lb3uoCQYluXGpVGk8Xwq5R4/s1600/IMG_0761.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="425" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBwfSX2UaPvSKqDlZeCMUX0RLhyphenhyphenmzUqehyphenhyphenSR0cpLQTRS6GPv42yXpD0Y1quxSXjAReD37DqbjpD6AnXyJaiDC09_SKu2cfVEOaBQWmV0CgbSLMJ6p3wtI2lb3uoCQYluXGpVGk8Xwq5R4/s640/IMG_0761.JPG" width="640" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
.....here's the second time. </div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhx9hCgxPNDxBPmwXu0bBib6tXzoY-raCq-62pNx4j68hRhCb5X5mwv8-EWg6kKMozvrOHVjzrgXVK2_h7uKVuo5NIuzmvZ1jZ-qscFMC9d6OUcwha8AeqxunhqBbr1HEvmUFpc7x0XVpg/s1600/IMG_0792.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="425" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhx9hCgxPNDxBPmwXu0bBib6tXzoY-raCq-62pNx4j68hRhCb5X5mwv8-EWg6kKMozvrOHVjzrgXVK2_h7uKVuo5NIuzmvZ1jZ-qscFMC9d6OUcwha8AeqxunhqBbr1HEvmUFpc7x0XVpg/s640/IMG_0792.JPG" width="640" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
My now 70lb P U P P Y</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPcr8pCQ9a44SdI9qaFV7lEdR4BbRCiuykBC7QTBYEGN8rbaQwbl64CQjTH4nsxwJnM9PNr8pwAs3Yyc9hJoKnN_8UJDsV78YIxWhkF3ztIOI3IEpJkEp0Aukn1vpwbyzWJMdUWbUDy_c/s1600/IMG_0809.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="425" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPcr8pCQ9a44SdI9qaFV7lEdR4BbRCiuykBC7QTBYEGN8rbaQwbl64CQjTH4nsxwJnM9PNr8pwAs3Yyc9hJoKnN_8UJDsV78YIxWhkF3ztIOI3IEpJkEp0Aukn1vpwbyzWJMdUWbUDy_c/s640/IMG_0809.JPG" width="640" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
Kaleb's favorite thing...books</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoiNIG_GwM1yVyP17rMfhacGXt5kAwmBpwCWIFmX7KtO63BCRyuNaeS21g_kafSn_fN7XGnQRyf_UrkE4vVaJHkzf-IHji-9KhAl_KNhNAk6WVn6t4jir0qG5blXqPgoNf_6Fps8GDhIU/s1600/IMG_0813.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="425" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoiNIG_GwM1yVyP17rMfhacGXt5kAwmBpwCWIFmX7KtO63BCRyuNaeS21g_kafSn_fN7XGnQRyf_UrkE4vVaJHkzf-IHji-9KhAl_KNhNAk6WVn6t4jir0qG5blXqPgoNf_6Fps8GDhIU/s640/IMG_0813.JPG" width="640" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
....even if they are upside down. </div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7CWZbH0cWdfhQPHralGTRYfBQvTJYA0z4afY0X_U-NJPKNMe0EkaP9tKhjn41aYOQpLZpHG66aHeacbqLqQ5-ZJa3DYp60uhJntjn7cL7jLGWMFxXHGldnV7NwfLndjh2Gra0T0bbaKM/s1600/IMG_0827.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="425" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7CWZbH0cWdfhQPHralGTRYfBQvTJYA0z4afY0X_U-NJPKNMe0EkaP9tKhjn41aYOQpLZpHG66aHeacbqLqQ5-ZJa3DYp60uhJntjn7cL7jLGWMFxXHGldnV7NwfLndjh2Gra0T0bbaKM/s640/IMG_0827.JPG" width="640" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
Love this little man to the moon....</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWNjnw7woln0LQnKUnYR9pIBEaXBFvsz2VHl0YC9XATRvt4r4m2xQmW7C8dQd0gV4saPcE6LxMQ2qhtl9fJNz51KeAR7GsIum_Cn55MIx4BGXOIYBInBzHzdQ_gRhFpy0b3GdAPbTFCN0/s1600/IMG_0830.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWNjnw7woln0LQnKUnYR9pIBEaXBFvsz2VHl0YC9XATRvt4r4m2xQmW7C8dQd0gV4saPcE6LxMQ2qhtl9fJNz51KeAR7GsIum_Cn55MIx4BGXOIYBInBzHzdQ_gRhFpy0b3GdAPbTFCN0/s640/IMG_0830.JPG" width="425" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
And he loves his books. </div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
Basically as soon as he got out of his bed he was happy and smiley...and hitting me a lot. He fakes so well...I'm pretty sure he knows he can use his special-ness to his benefit. You little stinky butt, I'm on to you. </div>
<div class="separator" style="clear: both; text-align: center;">
Goodnight! </div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
[sn: Nolan has been asleep since 6:30pm... hallelujah]</div>
<div class="separator" style="clear: both; text-align: center;">
[UPDATE on sn: Nolan is no longer asleep. Five minutes after posting this he came out of his room and will now not stop crying. Why do I put them to bed early again? Oh and now he just thew his cup at the dog...I must go rescue someone]</div>
<br />Erinhttp://www.blogger.com/profile/15085993190140465537noreply@blogger.com3tag:blogger.com,1999:blog-2987456537239626665.post-42284292849854455272012-12-11T20:03:00.002-05:002012-12-11T20:03:24.917-05:00SleepKaleb has been pulling this thing for a couple of weeks now where he will cry and cry for hours if you let him at bedtime. It is driving me crazy! He can get out of anything pretty much because of his medical issues. With Nolan we really just let him cry it out...which in all honestly didn't happen that often. <div>
<br /></div>
<div>
But now with Kaleb...could the crying hurt his heart? Did he pull his g-tube out? Is his leg caught? We have a camera right on top of him but the smaller things are pretty hard to see. Not to mention he chokes himself and it makes it obviously hard to breath for him...which breathing is already an "issue". We recently found a bump on the back of his head, possibly related to his hydrocephalus so this makes me worry even more. His neuro believes he may even be having migraine type headaches so if I let him cry it out...does that make his head hurt more? Ugh... </div>
<div>
<br /></div>
<div>
It has only been 34 minutes and I'm pretty sure I'm going to cave soon. We both could use a good snuggle anyway. </div>
Erinhttp://www.blogger.com/profile/15085993190140465537noreply@blogger.com0tag:blogger.com,1999:blog-2987456537239626665.post-19037343453739913602012-12-01T00:42:00.000-05:002012-12-01T00:42:26.091-05:00New CameraI went ahead and bought myself a Christmas present...early. That's okay right? I bought a Canon t3 Rebel DSLR camera. It came with two lenses and I'm having so much fun testing it out. Obviously I'm no professional but I'd like to think I could be one day. So the learning begins...<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEio75av-c9A7EkjErGmJ_pU7pqPaCmaA-k6WXDCU6l5Adr4SJJIG2ki-M1uiS29FTkeI4CwaDVMMGWwImUzEPBSKdSRud4eYT0agzt4Q6tJAGcHn1LJPE7mKFb2eGTWZSWDZe7edigOsIk/s1600/IMG_0035.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEio75av-c9A7EkjErGmJ_pU7pqPaCmaA-k6WXDCU6l5Adr4SJJIG2ki-M1uiS29FTkeI4CwaDVMMGWwImUzEPBSKdSRud4eYT0agzt4Q6tJAGcHn1LJPE7mKFb2eGTWZSWDZe7edigOsIk/s400/IMG_0035.JPG" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8LUQBURKpT5ZmtqZ14mQaE7KWif1RY3WF6b7qH1iUPnZCtSTlFrH2dTgrsvJy2qpWcLtlqjk2frzeme5QmLA06tpZs89IqERmZQFoyz8QiDkhPjERZz6-MoEJ69JI7-_2nGsLxtu4O7s/s1600/IMG_0038.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8LUQBURKpT5ZmtqZ14mQaE7KWif1RY3WF6b7qH1iUPnZCtSTlFrH2dTgrsvJy2qpWcLtlqjk2frzeme5QmLA06tpZs89IqERmZQFoyz8QiDkhPjERZz6-MoEJ69JI7-_2nGsLxtu4O7s/s400/IMG_0038.JPG" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitHmOvdBXwJPh75obZwLEyZ3J2jyLlmbNMqpkdbfTAJWb0r-0EHoKL_0G27wb066c19sveeT1q0OBD7rwdC-67sxDQQXAQupasULSJh8wzHfhsHCurLQQpiprE0DvS5cHuh6Xo81iYXdk/s1600/IMG_0137.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitHmOvdBXwJPh75obZwLEyZ3J2jyLlmbNMqpkdbfTAJWb0r-0EHoKL_0G27wb066c19sveeT1q0OBD7rwdC-67sxDQQXAQupasULSJh8wzHfhsHCurLQQpiprE0DvS5cHuh6Xo81iYXdk/s400/IMG_0137.JPG" width="266" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi-2S1MZuVWg1fja3S4f78iyDAcqcUjPnHKra2i9FMvda2vn8eglriLi4YqK0AQrICZf70g2K1a3qraYwUcxQWKy024VhdZuflZTVKSoi_FbtOFCM1SrmBJEYttnHRDcnVMa5rSDo6it4/s1600/IMG_0138.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi-2S1MZuVWg1fja3S4f78iyDAcqcUjPnHKra2i9FMvda2vn8eglriLi4YqK0AQrICZf70g2K1a3qraYwUcxQWKy024VhdZuflZTVKSoi_FbtOFCM1SrmBJEYttnHRDcnVMa5rSDo6it4/s400/IMG_0138.JPG" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmw6htY8KQ7mj31yce5AbwKcFNPIw7yGWc4llI7FmXlzIVa7Tf89m8FkjU0FRoihvkgTP9mJTRh0rcH_vLCJgOiqGl7df2cIlIKDeGLbEZZBr1z2tSI6aYT5aDqG2x5GBfNBP4mhlnYdE/s1600/IMG_0269.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmw6htY8KQ7mj31yce5AbwKcFNPIw7yGWc4llI7FmXlzIVa7Tf89m8FkjU0FRoihvkgTP9mJTRh0rcH_vLCJgOiqGl7df2cIlIKDeGLbEZZBr1z2tSI6aYT5aDqG2x5GBfNBP4mhlnYdE/s400/IMG_0269.JPG" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJu5reTgjEPsdXoIJCaBme1L9nEvIFlVA9d2j6F08FtCZB4NRYDYMJSOPvdVlI4mkUhYn6KnEYWm0wRuyt8QHlwNpYnjvKe1-SBmi1VhLmTjQ97x-lxKBTEHBzbGbnpTpTon0rsVABgkc/s1600/IMG_0317.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJu5reTgjEPsdXoIJCaBme1L9nEvIFlVA9d2j6F08FtCZB4NRYDYMJSOPvdVlI4mkUhYn6KnEYWm0wRuyt8QHlwNpYnjvKe1-SBmi1VhLmTjQ97x-lxKBTEHBzbGbnpTpTon0rsVABgkc/s400/IMG_0317.JPG" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIqhDbZItWTX79OvJ6FKMQLJn7imGRNAn7E6LRyQyTU1SPj_fm_1Z_quqW9mXVDNsiwiKgRg3Ur52HGnAPWdDmdLQmKB1v0NjgwAA6wrcWGr3oxdB5Em3nbrgdD84f7bD-OZ7uicaXTQU/s1600/IMG_0327.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIqhDbZItWTX79OvJ6FKMQLJn7imGRNAn7E6LRyQyTU1SPj_fm_1Z_quqW9mXVDNsiwiKgRg3Ur52HGnAPWdDmdLQmKB1v0NjgwAA6wrcWGr3oxdB5Em3nbrgdD84f7bD-OZ7uicaXTQU/s400/IMG_0327.JPG" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1vA1d0hjUhVOlLdg1WQb3-E5IdQEc_EoThsdnh8g44ZpMEy71YAji_SqtjinCQly33B7Qwxm8gBP-eEjvXhnYUG7MYV_P-Af4BH-5zXqBMKwF0me6PF70B3ljiIwQ159mJBDWaJf70MQ/s1600/njclose.jpg.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1vA1d0hjUhVOlLdg1WQb3-E5IdQEc_EoThsdnh8g44ZpMEy71YAji_SqtjinCQly33B7Qwxm8gBP-eEjvXhnYUG7MYV_P-Af4BH-5zXqBMKwF0me6PF70B3ljiIwQ159mJBDWaJf70MQ/s400/njclose.jpg.jpg" width="266" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiw86K4DqFiXqva5vANmewJ-GIn5dHIPbM2OIY_aVNn7lUYkoB4SpbPQcmyb5EC6OaDIy_jHtvr_bR7Wud-MziV2ywe_dYzEOiiky2r5JlQMcsINGjWhF04Ie8trEqRowWzV7wFtAyb-3s/s1600/njgreen.jpg.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiw86K4DqFiXqva5vANmewJ-GIn5dHIPbM2OIY_aVNn7lUYkoB4SpbPQcmyb5EC6OaDIy_jHtvr_bR7Wud-MziV2ywe_dYzEOiiky2r5JlQMcsINGjWhF04Ie8trEqRowWzV7wFtAyb-3s/s400/njgreen.jpg.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgV-NBfqgZRVGyF-ClkvhpboXbI5VG7pa0y1q3fNnTJN5qyHmql3tHi8axtOWTK3ps_X7f2bxPklzYeK0v7h_YdZ7mSMwArHnYHGBQc3YaUBfnyrRQhAIKN_c1RSzFIM0rktha9PPmf_s8/s1600/nolantree.jpg.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgV-NBfqgZRVGyF-ClkvhpboXbI5VG7pa0y1q3fNnTJN5qyHmql3tHi8axtOWTK3ps_X7f2bxPklzYeK0v7h_YdZ7mSMwArHnYHGBQc3YaUBfnyrRQhAIKN_c1RSzFIM0rktha9PPmf_s8/s400/nolantree.jpg.jpg" width="400" /></a></div>
<br />Erinhttp://www.blogger.com/profile/15085993190140465537noreply@blogger.com0tag:blogger.com,1999:blog-2987456537239626665.post-77666968827661714982012-11-17T23:46:00.002-05:002012-11-17T23:53:18.905-05:00Crafts R'Us<span style="font-family: Trebuchet MS, sans-serif;">I like to pretend that I'm crafty. Really, I have good ideas but they never seem to work out. Right now I'm sitting at my dining table and staring at all of the Christmas paraphernalia</span><span style="font-family: 'Trebuchet MS', sans-serif;"> I bought to make an ornament wreath. I got halfway done and realized I needed more of the larger ornaments. Another craft abandoned. </span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;"><br /></span>
<span style="font-family: 'Trebuchet MS', sans-serif;">And now my table just looks like Santa threw up all over it and there's glitter everywhere. </span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;"><br /></span>
<span style="font-family: 'Trebuchet MS', sans-serif;">Sure I'll finish it eventually, I'm pretty sure I don't have a storage box with a label that says, "xmas-sparkly-glittery-jingly-items". </span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">Unfortunately this just means I'm going to have to take both of my kids into the craft store. Which, in-case you didn't know, doubles as a toy store.....</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">fake flowers = fishing pole and/or sweeper</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">ornaments = balls to throw</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">placemats = coloring pages</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">glue = glue (YAY...glue...)</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">yarn = jump rope</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">You get the picture. :/</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<div style="text-align: center;">
<span style="font-family: Trebuchet MS, sans-serif;"><center>
</center>
</span></div>
<div style="text-align: center;">
<span style="font-family: Trebuchet MS, sans-serif;"><div style="line-height: 0px; padding-bottom: 2px;">
<a href="http://pinterest.com/pin/239535273900910852/" target="_blank"><img border="0" height="400" src="http://media-cache-ec6.pinterest.com/upload/239535273900910852_LIjLLQcm_c.jpg" width="400" /></a></div>
<div style="float: left; padding-bottom: 0px; padding-top: 0px;">
<div style="color: #76838b; font-size: 10px;">
Source: <a href="http://matt-and-becky.blogspot.com/2009/12/12-days-of-christmas-crafts-day-5.html" style="color: #76838b; font-size: 10px; text-decoration: underline;">matt-and-becky.blogspot.com</a> via <a href="http://pinterest.com/dizfreak/" style="color: #76838b; font-size: 10px; text-decoration: underline;" target="_blank">Debbie</a> on <a href="http://pinterest.com/" style="color: #76838b; text-decoration: underline;" target="_blank">Pinterest</a></div>
</div>
</span></div>
<div style="text-align: center;">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div style="text-align: center;">
<span style="font-family: Trebuchet MS, sans-serif;"><div style="line-height: 0px; padding-bottom: 2px;">
<a href="http://pinterest.com/pin/39969515412394291/" target="_blank"><img border="0" height="400" src="http://media-cache0.pinterest.com/upload/39969515412394291_dKoPeMmZ_c.jpg" width="317" /></a></div>
<div style="float: left; padding-bottom: 0px; padding-top: 0px;">
<div style="color: #76838b; font-size: 10px;">
Source: <a href="http://www.savvyseasons.com/2009/11/christmas-ideas-happy-saturday-im-in.html" style="color: #76838b; font-size: 10px; text-decoration: underline;">savvyseasons.com</a> via <a href="http://pinterest.com/gigishouse/" style="color: #76838b; font-size: 10px; text-decoration: underline;" target="_blank">Gena</a> on <a href="http://pinterest.com/" style="color: #76838b; text-decoration: underline;" target="_blank">Pinterest</a></div>
</div>
</span></div>
<div style="text-align: center;">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div style="text-align: center;">
<span style="font-family: Trebuchet MS, sans-serif;"><div style="line-height: 0px; padding-bottom: 2px;">
<a href="http://pinterest.com/pin/30399366205078083/" target="_blank"><img border="0" height="352" src="http://media-cache-ec3.pinterest.com/upload/30399366205078083_VZ7I5lli_c.jpg" width="600" /></a></div>
<div style="float: left; padding-bottom: 0px; padding-top: 0px;">
<div style="color: #76838b; font-size: 10px;">
Source: <a href="http://blog.heylook.fi/search?updated-max=2011-12-01T21:04:00%2B02:00&max-results=7&start=84&by-date=false" style="color: #76838b; font-size: 10px; text-decoration: underline;">blog.heylook.fi</a> via <a href="http://pinterest.com/emagura/" style="color: #76838b; font-size: 10px; text-decoration: underline;" target="_blank">Liz</a> on <a href="http://pinterest.com/" style="color: #76838b; text-decoration: underline;" target="_blank">Pinterest</a></div>
</div>
</span></div>
<div style="text-align: center;">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div style="text-align: center;">
<span style="font-family: Trebuchet MS, sans-serif;"><div style="line-height: 0px; padding-bottom: 2px;">
<a href="http://pinterest.com/pin/250090585527721209/" target="_blank"><img border="0" height="520" src="http://media-cache0.pinterest.com/upload/250090585527721209_nwS24ML7_c.jpg" width="520" /></a></div>
<div style="float: left; padding-bottom: 0px; padding-top: 0px;">
<div style="color: #76838b; font-size: 10px;">
Source: <a href="http://yournestdesign.blogspot.com/2010/11/christmas-is-coming-exploring-blue.html" style="color: #76838b; font-size: 10px; text-decoration: underline;">yournestdesign.blogspot.com</a> via <a href="http://pinterest.com/alishagraff/" style="color: #76838b; font-size: 10px; text-decoration: underline;" target="_blank">Alisha</a> on <a href="http://pinterest.com/" style="color: #76838b; text-decoration: underline;" target="_blank">Pinterest</a></div>
</div>
</span></div>
<div style="text-align: center;">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div style="text-align: center;">
<br /></div>
Erinhttp://www.blogger.com/profile/15085993190140465537noreply@blogger.com0tag:blogger.com,1999:blog-2987456537239626665.post-69857061634369949402012-11-14T14:50:00.004-05:002012-11-14T14:50:47.296-05:00Canine MedicineSometimes I'm pretty sure that any Trisomy parent could breeze through medical school and get their doctorate easily. Sometimes even, we are the ones that teach our children's doctors about Trisomy and related chromosome disorders. But when it comes to medical knowledge about animals, I am completely useless.<br />
<br />
We have two dogs and a cat [I really don't know what we were thinking]. We recently decided to get both of our dogs neutered. Our big dog, Tucker, had his surgery last week. He did really well if you don't count the fact that he learned how to take off his cone quickly and pull out his staples. A week later was our little dog's turn, Yogi. That would be today. My hubby took him in this morning and within the past hour they called me to tell me they were about to take him back to the OR when they noticed recent blood tests came back concerning.<br />
<br />
Something about his liver levels being high? The words liver shunt were also thrown in there. I think other words were, additional testing, blood tests, pre and post something, and then something about $91.98. I must have asked her a million questions and still have no clue other than the fact that something might be up with his liver? Oh and the testing is <b><i>expensive</i></b>. I definitely understood that.<br />
<br />
So here's to hoping no more testing and everything is just fine. Because honestly...I don't want to become a self proclaimed expert in canine medical issues.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlBfrAXvfeAosIh_Nt2UvMtn-uh0HSt8umD2ukppeWysA6YZEluA0ZwBPOI9kQzmIv4KRxyHmUxsh52yz849zlF5lS0RaRTPpcnycw6cfLVKPRIp0M-M5drE4ZQyFFyV07cILQRcogrxA/s1600/IMAG1193.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlBfrAXvfeAosIh_Nt2UvMtn-uh0HSt8umD2ukppeWysA6YZEluA0ZwBPOI9kQzmIv4KRxyHmUxsh52yz849zlF5lS0RaRTPpcnycw6cfLVKPRIp0M-M5drE4ZQyFFyV07cILQRcogrxA/s640/IMAG1193.jpg" width="385" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
Yogi has our heart :) </div>
<br />
<br />
<br />Erinhttp://www.blogger.com/profile/15085993190140465537noreply@blogger.com0tag:blogger.com,1999:blog-2987456537239626665.post-34625023109855852412012-11-07T14:31:00.005-05:002012-11-07T14:42:53.303-05:00ReeseyThe month of August (in 2010) was the worst month of my life. There was something wrong with my unborn baby and absolutely nothing could fix it. Since then I have enthralled myself in to stories of others who have given birth to babies with special needs, trisomy families, and even families whose children passed away at birth or way too early. Call me horrible, or whatever but it was what I could relate with...what I still relate to. In the beginning of my journey it was stories of other people, people I did not know, had never met. I still cried for them and my heart ached for their families but it wasn't personal.<br />
<div>
<br /></div>
<div>
I'm over two years into my "journey" and I've met so many wonderful people, children, families because of my special Kaleb. Now...unfortunately, I hear more often of awful things happening to kiddos. It's terrible. I hate it. It takes me right back to the beginning of my journey but even worse it envelops me entirely. I hurt so much for these families and wish so much that I could do more than give them kind words and warm thoughts. I've said it many times but it just isn't fair...kids should not have to suffer! </div>
<div>
<br /></div>
<div>
Recently I found out about a sweet sweet little girl named, Reese ("Reesey"). I went to school with her mommy and later in life our paths crossed again at a mutual friend's wedding reception. After that I moved to Florida and we were only FB friends. We lost contact...but I often kept up with her ever growing family. She and her husband now have four beautiful daughters. Reesey is the third youngest. On Halloween they got horrible, awful news...Reesey has a brain tumor. My heart aches...deeply. </div>
<div>
<br /></div>
<div>
Here is Reesey's mommy's update on her <a href="http://www.thisyearslovewilllast.com/2012/11/the-worst-5-days-of-my-life.html" target="_blank">blog</a> about what all has gone on. I know there are so many of you that are wonderful prayer warriors for my Kaleb, please say a little prayer for little Reesey and her family.<br />
<br />
There is also a giveforward page set up for Reesey...<br />
<br />
<span style="color: #007700; font-family: andale mono, lucida console, monospace;"><span style="font-size: 12px; line-height: 18px;"></span></span><br />
<center>
<span style="color: #007700; font-family: andale mono, lucida console, monospace;"><span style="font-size: 12px; line-height: 18px;">
<script src="http://www.giveforward.com/widget.js" type="text/javascript"></script><script type="text/javascript">BuildWidget('prayersforreesey');</script></span></span></center>
<span style="color: #007700; font-family: andale mono, lucida console, monospace;"><span style="font-size: 12px; line-height: 18px;">
</span></span></div>
Erinhttp://www.blogger.com/profile/15085993190140465537noreply@blogger.com0tag:blogger.com,1999:blog-2987456537239626665.post-45465742122428741392012-10-29T14:44:00.003-04:002012-10-29T14:44:10.415-04:00Diva MomOkay I need advice. How do you become one of those moms that do everything. And I mean <em><strong>everything</strong></em>! <br />
<br />
I know everyone has kind words about my day to day with so many medical things going on but really, I need to step it up a notch. Part of the reason I didn't enroll Nolan in soccer this season is because I'm terrified...What if I can't live up to the soccer mom role? Right now I'm aceing it at being a "medical mom" but adding more to that? I cringe. <br />
<br />
I want my kids in sports. I want to do crafts with them. How do moms do all of this and have a clean house? Or do they do all of it and their houses are all in rubbles from the dirt and mess? What's the secret women? <br />
<br />
I'm not a neat freak by any means (ask my Mom...she'll set you straight), but the sight of toys and stuff thrown everywhere and underfoot...it makes me ill. My husband and I look at our house at times and we're just like, how did this happen? And we only have two kids. And those two kids don't have sports activities or friends over or craft projects all over the place. <br />
<br />
Now that I'm feeling better (I'm being treated for a damaged right inner ear which has screwed up my balance for months) I finally have some energy so I really want to start crafts with the kids. I also want to take them all over the place. Parks. Pumpkin patches. You name it, we should be there. <br />
<br />
Help!<br />
<br />
<center>
And here are some crafts that I'm aching to do....</center>
<br />
<div style="line-height: 0px; padding-bottom: 2px;">
<a href="http://pinterest.com/pin/214906213438126721/" target="_blank"><img border="0" height="693" src="http://media-cache-ec4.pinterest.com/upload/140737557074843858_RaN4o1K4_c.jpg" width="554" /></a></div>
<div style="float: left; padding-bottom: 0px; padding-top: 0px;">
<div style="color: #76838b; font-size: 10px;">
Source: <a href="http://sassysanctuary.blogspot.com/2010/09/halloween-rag-wreath.html" style="color: #76838b; font-size: 10px; text-decoration: underline;">sassysanctuary.blogspot.com</a> via <a href="http://pinterest.com/dontmesswithtx/" style="color: #76838b; font-size: 10px; text-decoration: underline;" target="_blank">Erin</a> on <a href="http://pinterest.com/" style="color: #76838b; text-decoration: underline;" target="_blank">Pinterest</a></div>
</div>
<br />
<br />
<div style="line-height: 0px; padding-bottom: 2px;">
<a href="http://pinterest.com/pin/214906213439710289/" target="_blank"><img border="0" height="413" src="http://media-cache-lt0.pinterest.com/upload/219057969345993698_ka1jZqox_c.jpg" width="554" /></a></div>
<div style="float: left; padding-bottom: 0px; padding-top: 0px;">
<div style="color: #76838b; font-size: 10px;">
Source: <a href="http://www.etsy.com/listing/80670049/halloween-ghosts-childs-footprint?ref=sr_gallery_14&ga_search_query=Halloween+Children&ga_view_type=gallery&ga_mh_hub=kids&ga_mh_eid=442912645&ga_mh_section=header&ga_page=13&ga_search_type=handmade&ga_facet=handmade" style="color: #76838b; font-size: 10px; text-decoration: underline;">etsy.com</a> via <a href="http://pinterest.com/dontmesswithtx/" style="color: #76838b; font-size: 10px; text-decoration: underline;" target="_blank">Erin</a> on <a href="http://pinterest.com/" style="color: #76838b; text-decoration: underline;" target="_blank">Pinterest</a></div>
</div>
<br />
<br />
Erinhttp://www.blogger.com/profile/15085993190140465537noreply@blogger.com0tag:blogger.com,1999:blog-2987456537239626665.post-21940375535391240702012-09-27T16:32:00.000-04:002012-09-27T16:32:15.895-04:00My Future TeenagerDear Teenage Nolan,<br />
<br />
This week you had your first real pimple. When you are 13 and tell me you got your first pimple I will refer you back to this post. You got your first pimple when you were 3 years old. Wow, what a first! I am so proud but a little confused as to why you got it. It wasn't like a little flat red mark...it was pulging with green/yellow stuff right in the middle of your nose. Today I took you to look for a preschool. In hindsight I should have popped it last night because that thing could have been a lady killer...literally. So today (after the preschool visit) I had finally had enough. I popped it. Maybe it was the right thing to do...any maybe it will emotionally scar you for the rest of your life. I'm not really sure. But I'm really glad that thing is no longer staring at me. Your Dad and I called you Rudolph a couple of times this week. I apologize, that was really wrong of us to do. I really hope you don't hate us when you get older, just don't ever forget about all of the hershey kisses I give you when you go potty in the toilet. Probably another one of my not so greatest moments...I'm human and I've made a lot of mommy mistakes. Kind of like posting a blog entry about your first pimple. :/ <br />
<br />
Other than that exciting news, you toured a preschool today. It was really neat and they actually go up to 2nd grade. Apparently their curriculum is amazing...you can skip a grade, get tested throughout your time at the school, and they teach you three languages besides English. It all sounds great and the reviews are stunning, a lot of parents say when their kids go to Kindergarten at an elementary school that the curriculum is too easy for their kid. But my only problem is what happens when at four years old you are smarter than me and start talking to me in Chinese? Yes, they teach ALL the kids (no matter age) Chinese, Spanish, and ASL. I think we'll try it and I'll keep my fingers crossed that you never cuss me out in Chinese. Spanish, English, and ASL cussing is okay though because I know at least a little bit in all of those. <br />
<br />
I love you, future teenage Nolan.<br />
[Even if you hate me and cuss me out in Chinese]Erinhttp://www.blogger.com/profile/15085993190140465537noreply@blogger.com1tag:blogger.com,1999:blog-2987456537239626665.post-44401789484412874282012-09-17T22:14:00.000-04:002012-09-17T22:14:39.665-04:00Chicks Dig Scars<i><b><span style="color: #3d85c6;">Yes, it's true</span></b></i>. I like scars. They tell about experiences and your life. My son's scars are even more near and dear to my heart. They represent every surgery he has been through and made it through with a smile.<br />
<br />
Today I took Kaleb to his Pediatric Surgeon. The guy isn't all that bad, sometimes a little busy. Pretty good looking for an older guy too, that doesn't hurt. Today he was really nice, listened, shot the breeze with my 3 year old, and then he focused on Kaleb. I took Kaleb there because his umbilical hernia that he's had since he was born, has been sticking out and has changed. I was prepared for him to say, it's fine and just cosmetic and kick us out of his office. I would then feel like I'm a little too crazy when it comes to Kaleb's medical issues and jump the gun sometimes.<br />
<br />
Is that what he said? <b>Nope.</b> Not only does Kaleb have ONE hernia, he now has TWO. Along with his umbilical hernia he also has an incisional hernia which occurred after he had his Nissen surgery. Boo. They will need to fix them but normally don't until the child is around 3 years old after they have been walking for a while. Our surgeon asked me if Kaleb would even be able to walk in the future. I honestly have no idea. He said that Kaleb needs increased muscle tone in the area for the surgery which normally comes along during walking. Not to mention Kaleb is already low tone throughout his body. Ugh.<br />
<br />
Today wasn't the best of days but it definitely wasn't the worst. I just kept thinking how most parents don't ever have their child's doctor ask if their kid will be able to walk. It's normally, "is he walking yet" or "how long has he been walking?". Not here.<br />
<br />
Don't get me wrong, I wouldn't change Kaleb for anything. He is perfect in every tiny way. He melts my heart and has taught me so much about life and never taking anything for granted. But, I did find myself rocking him today apologizing and bawling my eyes out to him for his feet. I know it's not my fault. And it isn't even due to his chromosome disorder, they are completely independent. Does that make sense? He just has so much against him, hurdles, surgeries, tests, labs, hospitalizations, etc and his feet affect him in so many areas. It makes me so frustrated for him.<br />
<br />
Please know this. I love his feet. I love the curve of them, the way his pinky toenails grows up instead of out, the three middle toes that are pulled back, the scars on them. I love to tickle them and kiss them and rub them. They are the cutest feet I've ever seen!<br />
<br />
I love you Kaleb and your silly little feet! We will get past this like everything else. <3 p="p"><br />
</3><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3-rcfr9UENqWztr36P8MXObe4u6Vf4lJBc5uZ5qD31yFBFcSD6CUjljMFSZSuDL72SVF4vOn8CO4rdfugrl6VdXEechXAQOLgWBmcsQX703Ud3MPO4qsKnr6MJ8GfwjQgklkJmA8tymU/s1600/feetlove2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3-rcfr9UENqWztr36P8MXObe4u6Vf4lJBc5uZ5qD31yFBFcSD6CUjljMFSZSuDL72SVF4vOn8CO4rdfugrl6VdXEechXAQOLgWBmcsQX703Ud3MPO4qsKnr6MJ8GfwjQgklkJmA8tymU/s400/feetlove2.jpg" width="375" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br /><!--3-->Erinhttp://www.blogger.com/profile/15085993190140465537noreply@blogger.com0tag:blogger.com,1999:blog-2987456537239626665.post-33984716530189933242012-09-16T14:19:00.002-04:002012-09-16T14:19:35.392-04:00UpdatedJust wanted to put this out there, I updated the section of this blog, "Our Specialists". It's a running list of all of Kaleb's specialty doctors and any updates that have happened this year. I've also added four new ones and I'm sure I'm missing several.<br />
<br />
Also, please keep Kaleb in your prayers tomorrow as we will be taking him to his Pediatric Surgeon to look at his umbilical hernia which may now need to be repaired. :(Erinhttp://www.blogger.com/profile/15085993190140465537noreply@blogger.com0tag:blogger.com,1999:blog-2987456537239626665.post-62923810953914545902012-09-16T13:14:00.002-04:002012-09-16T13:14:54.568-04:00I'm a Greatist<div style="text-align: center;">
<a href="http://www.greatist.com/general/health-fitness-manifesto" target="_blank"><img alt="" class="alignnone size-full wp-image-18553" height="1276" src="http://greatist.wpengine.netdna-cdn.com/wp-content/uploads/2011/05/Greatist-Health-and-Fitness-Manifesto.png" width="600" /></a>More must-read <a href="http://www.greatist.com/" target="_blank">health & fitness news and information</a> at <a href="http://www.greatist.com/" target="_blank">Greatist</a>.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
I absolutely love the website, <a href="http://www.greatist.com/" target="_blank">Greatist</a>! They give me so much inspiration to start this weight loss journey and have phenomenal information to help anyone, whether you want to lose weight or just have a happier life. I found the above inspiration a few minutes ago, if only I could immediately print it out on a poster and hang it in front of my elliptical. :) </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Here's to a "Greatist" kind of day with inspiration for everyone. </div>
<div style="text-align: center;">
Cheers! </div>
Erinhttp://www.blogger.com/profile/15085993190140465537noreply@blogger.com0tag:blogger.com,1999:blog-2987456537239626665.post-6879301760546991312012-09-15T23:39:00.005-04:002012-09-15T23:39:44.903-04:00[Not So] Goodnight Moon<div style="text-align: center;">
<span style="font-family: Trebuchet MS, sans-serif;">Dear Nolan, </span></div>
<div style="text-align: center;">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div style="text-align: center;">
<span style="font-family: Trebuchet MS, sans-serif;">You are three. You are wearing underwear most of the time with no accidents. You use the toilet. You use a normal fork and spoon. You love bath time. You can put your shoes on and do so many other great "big boy" things. But why oh why do you HATE sleeping? You were always a great sleeper. Then you turned two and I think someone told you that you could test your boundaries. I'd like to find that person, who was it? You've been taking Super Batman Juice [Melatonin] for a month now, some nights are great and then there are those nights that I should probably not repeat. Remember, if you don't have anything nice to say...don't say it. You know that Daddy is a pushover to letting you sleep in bed and you have perfected your speech to him so you can sleep with us. Ugh. This morning my alarm was warm urine all over my back. Thank you for that. I do love you and everything about you, but we need to keep all urine to ourselves. Please sleep in your bed tonight. We have made your room so nice and cool [seriously, I'd like to sleep in there] but you hate it. You come out of your room every 15 minutes, "Mom, I need chocomilk", "Mom, I need to go pee pee", "Mom, I need to give you a kiss". You're really good at what you do. But please...for my sanity [which ultimately affects your sanity] GO TO BED...IN YOUR BED! </span></div>
<div style="text-align: center;">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div style="text-align: center;">
<span style="font-family: Trebuchet MS, sans-serif;">Love, </span></div>
<div style="text-align: center;">
<span style="font-family: Trebuchet MS, sans-serif;">Your very sleepy and slightly annoyed Mommy</span></div>
<div style="text-align: center;">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div style="text-align: center;">
<span style="font-family: Trebuchet MS, sans-serif;">PS:</span></div>
<div style="text-align: center;">
<span style="font-family: Trebuchet MS, sans-serif;">Please stop falling asleep on the couch right before dinner because you refuse to take a nap. It's impossible to wake you up and when you do wake up, watch out. In those times, I would like to be hiding. </span></div>
<div style="text-align: center;">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjqNZwSFKUs3rFRMG4rto8RVF4l86yqr1CYIm1BsQ-QDUXL_JOWDpXIZ9BY_o6BjNnaLYXmprrB00YGka6EEasMldXHnq2JslTZukIU-uaSF9JMdKUO40rtHUjxh5n4-pmS1Fma1ETHqQ/s1600/sleep.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjqNZwSFKUs3rFRMG4rto8RVF4l86yqr1CYIm1BsQ-QDUXL_JOWDpXIZ9BY_o6BjNnaLYXmprrB00YGka6EEasMldXHnq2JslTZukIU-uaSF9JMdKUO40rtHUjxh5n4-pmS1Fma1ETHqQ/s400/sleep.jpg" width="300" /></a></div>
<div style="text-align: center;">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
Erinhttp://www.blogger.com/profile/15085993190140465537noreply@blogger.com0tag:blogger.com,1999:blog-2987456537239626665.post-36788553917761939802012-09-15T21:44:00.004-04:002012-09-15T21:46:53.481-04:00Losing ItSurprisingly...this post is not about my kids. It's about me.<br />
<br />
I need to lose weight. A lot of it.<br />
<br />
I've never posted anything like this before but I need to be held accountable so why not here right? I will probably be disabling the ability for this to post to Facebook after I post things like this in the future, because really...I don't want everyone knowing about my weight issues [maybe I will after I lose a zillion pounds].<br />
<br />
My roomate who cooks amazing meals will be leaving tomorrow, while this is sad I am excited to start my weight loss journey which will be much easier without chicken enchiladas on my table and large amounts of spaghetti and sauce.<br />
<br />
I recently bought an elliptical and put it right in my living room [thank God we bought the house with the bigger living area], and while I use it...I don't use it like I should. Obviously. I also recently bought a Ninja blender and protein powder. I also love Jillian Michael's "30 Day Shred".<br />
<br />
I've done two 5k's [whatever, I didn't run but I still did it right?], but I would LOVE to get to the point of even thinking about doing a marathon. I like running more than most people, so I guess that's a good thing.<br />
<br />
I have cut out sodas and switched to sparkling water. Didn't you always know that I was high class like that? I like to lift weights. I love to see my calories burned go up and up as I work out. I very rarely do fast food and if I do I go for a lighter option [alright...most of the time...dammit].<br />
<br />
I need some awesome support and any tips or tricks you all have found to be helpful on your journey. Please help me along, hopefully I will be brave enough to post my good and not so good days.<br />
<br />
I can do this. I will do this.<br />
<br />
<a href="http://greatist.com/health/eat-healthy-at-the-bar/" target="_blank"><img alt="" border="0" class="aligncenter size-full wp-image-10183" height="8220" src="http://www.greatist.com/wp-content/uploads/2011/05/GRE_I_01-Eating-in-Real-Life-Final_5-6.png" style="border: none;" title="How To Stay Healthy When Going Out to Drink" width="600" /></a>>Find more health and fitness advice at Greatist.com, one of the best <a href="http://greatist.com/">fitness blogs</a> online.Erinhttp://www.blogger.com/profile/15085993190140465537noreply@blogger.com4tag:blogger.com,1999:blog-2987456537239626665.post-82228048414284710652012-09-14T14:16:00.001-04:002012-09-14T14:16:31.370-04:00Growing Pains<br />
I can't believe how big my boys are getting. I feel like they were babies just yesterday. They are growing and becoming more independent which is great and all, but sometimes I just miss the baby days.<br />
<br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Nolan...</span><br />
<b><span style="font-family: Verdana, sans-serif;">*</span></b> is almost completely potty trained. He goes out in his underwear instead of diapers, he wears underwear at night and hasn't had ONE accident. I can't even believe it. I haven't been the most strict mom on potty training with him, probably because in all honesty the diapers are easier for me when we are going to and from therapies and doctor appointments constantly throughout the week. My bad. I actually started him on the potty when he was a year and a half old, that was when he first went pee pee in his little toilet. I thought that would be it and we were on our way to underwear. Clearly I was a very wrong mommy with way too many dreams. At least I was able to introduce the whole idea to him BEFORE Kaleb was born, after he was born it was unfortunately put on the hypothetical back burner. But not anymore. He has taken it into his own hands and done amazing at it. My little man is not so little anymore.<br />
<b><span style="font-family: Verdana, sans-serif;">*</span></b> talks in complete sentences...well, most of the time. It's really weird to have your child come in your bathroom and say, "Uh, Mommy...I going to use your toilet. I going to go pee pee and poo poo". It's like having an adult room mate that you can talk with but yet they make an unimaginable mess in your house and pee on your toilet seat. So odd.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtGOpJop-Y8Sa7UJfxwf80lF-Hd8-5600WasYxvo2_gynjDRTJlIZmFc7-5t3-sIMgklxfMHjzwNBbzPPo32_p-HOyAloNCBt_-WhSV4HxG7Fqf4f1jyUTkofOAtExwPToDz10ZLzvN78/s1600/butterplane2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtGOpJop-Y8Sa7UJfxwf80lF-Hd8-5600WasYxvo2_gynjDRTJlIZmFc7-5t3-sIMgklxfMHjzwNBbzPPo32_p-HOyAloNCBt_-WhSV4HxG7Fqf4f1jyUTkofOAtExwPToDz10ZLzvN78/s400/butterplane2.jpg" width="300" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
[Nolan and his plane that he made out of small butter packets that restaurants give to you. AMAZING!]</div>
<br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Kaleb...</span><br />
<b><span style="font-family: Verdana, sans-serif;">*</span></b> is speed crawling everywhere. It's insanely difficult to keep up with him. No matter how many times one vacuums the carpet, he WILL find some itty bitty thing on the floor and put it in his mouth. He also gets into the kitchen, opens the doors and pulls out everything. I thought about baby proofing but I'm so happy that he can even do this that I refuse. I just hide all of the unsafe things and let him have fun. It's all so tiring but I am so thankful for every little thing that he CAN do, I don't worry about how frustrating it can get constantly pulling stuff from his mouth or putting things back in the kitchen.<br />
<span style="font-family: Verdana, sans-serif;"><b>*</b></span> is going to be two in just a few months! I can't even believe it! He can crawl, pull up on his knees, stand with help, loves the water, does great in his therapies, and is even getting two molars (which haven't been so nice to him). He only has 6 teeth and people still ask me how old the baby is when we go out but he's so much more than "just a baby"!<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY_jDrcfjnEvgi_OfJwNvmRIzBxcGhuisb8jQKtNtqCOchAeHM1nXmjy-nECZcQ8C9f-rwEiQYG5NjP2rKV2mYfxSxl4yYEq7mLAM1q27CgTARNtMQhSrspmNNCRogjX5558TMiJZraBY/s1600/TCmommykaleb.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="275" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY_jDrcfjnEvgi_OfJwNvmRIzBxcGhuisb8jQKtNtqCOchAeHM1nXmjy-nECZcQ8C9f-rwEiQYG5NjP2rKV2mYfxSxl4yYEq7mLAM1q27CgTARNtMQhSrspmNNCRogjX5558TMiJZraBY/s400/TCmommykaleb.jpg" width="400" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
[An older one of Kaleb when he first started exploring the floor...this was printed in the newspaper]</div>
<br />
Alright, enough for today. I've got to keep up with this thing more often. I love being able to look back through my pregnancies with the kids and especially during the uncertain months while I was pregnant with Kaleb and his diagnosis.<br />
<br />
<br />
I can do this!<br />
Erinhttp://www.blogger.com/profile/15085993190140465537noreply@blogger.com0tag:blogger.com,1999:blog-2987456537239626665.post-86908252856956207832012-07-12T15:44:00.004-04:002012-07-12T15:44:42.503-04:00Well Hello ThereI'm back. At least for now. I can't even remember the last time I blogged but it's been a rough time since then. I'm slower than most to getting used to new situations and during my slow-ness...everything goes by the wayside.<br />
<br />
It's probably safe to bet that in the past couple of months my house been a complete wreck (along with my hair), laundry hasn't been done, and dinners haven't been cooked.<br />
<br />
In May Kaleb was hospitalized for sudden aspiration possibly due to neurological decline and had to have surgery to place a feeding tube and Nissen (along with surgery on both feet). Because of this, our lives and home have been insanely disrupted. But...I'm back. I'm trying to pull it all together. My house hasn't burned down and the kids are still alive (I should win an award for this).<br />
<br />
I know you all are in tears to know that I'm finally back and that I was missed so much...what can I say? :)<br />
<br />
I can do this. I can pick up the pieces (and the crap all over the house) and dust myself off. I must blog more, even if no one ever reads this. Even though our family is going through unbearable situations at times, I want to remember every day, appointment, surgery, hospitalization, first words, therapies, and the crazy stuff that my nearly 3 year old Nolan does. It may be painful now, but in many many years I will have this to look back on and I just know I will laugh my ass of.<br />
<br />
-EErinhttp://www.blogger.com/profile/15085993190140465537noreply@blogger.com1