tag:blogger.com,1999:blog-44142228579374750532024-03-05T03:52:40.935-05:00Our Family =0)This blog follows two of my most favorite people with 2 different diseases: Systemic Mastocytosis and Waldenstrom's Macroglobulemia. Life is crazy, but God continues to prove Himself faithful to us. He gives us the strength, peace, and hope we need to just rest in Him - the best place to be. We're not perfect, so there might be a few complaints from time to time on here, but for the most part we have joy on this journey.Anonymoushttp://www.blogger.com/profile/05794861969385963968noreply@blogger.comBlogger227125tag:blogger.com,1999:blog-4414222857937475053.post-69576549734453903342013-04-13T00:42:00.000-04:002013-04-13T00:42:05.867-04:00Update on the iPad Challenge . . . We have sold 3 pieces already!!!! THANK YOU!!!! I am really excited about this - Isaiah doesn't even know about it (I didn't want to tell him about the iPad until he actually earned it, he just thinks he's doing a fundraiser). Just so you know, this is legitimate. <br />
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There is a very compassionate lady, here in FL, who has a son with Autism. She started a jewelry (and other things) company to raise awareness and funds for people with Autism (funds go toward research, Surfers for Autism, and therapy). If you want to know more about The Puzzling Piece and a bit of the owner's story, here is an article about her and the company: <a href="http://www.wpbf.com/Mother-of-autistic-child-starts-Puzzling-Piece-charity/-/8789538/9834438/-/8vfwsx/-/index.html#.UWh57nFGCoI.facebook">http://www.wpbf.com/Mother-of-autistic-child-starts-Puzzling-Piece-charity/-/8789538/9834438/-/8vfwsx/-/index.html#.UWh57nFGCoI.facebook</a>.<br />
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I can hardly wait to see Isaiah's face when he receives this iPad - he will love it! Please, share this with your friends and family - the more help we get, the more he will sell & earn toward his iPad. He has to sell at least 60 pieces to get an iPad. Each item on the iPad Challenge tab counts as 1 point toward an iPad - so, literally, he has to sell 60 items. Anything over that goes toward an iTunes gift card for apps (so the more he sells, the better - there are great apps out there for people with ASD, some are free, some are cheap, but the really helpful ones are a bit pricey). <br />
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Here is an updated flyer for you:<br />
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So, please visit <a href="http://www.thepuzzlingpiece.com/products_ic.html" target="_blank">The Puzzling Piece</a> at <a href="http://www.thepuzzlingpiece.com/products_ic.html">http://www.thepuzzlingpiece.com/products_ic.html</a> and order one of the above items. Make sure you enter my name (Kelly Sandy - the account is under my name, since I am the adult) in the Challenger's Name box (below the item you selected). <br />
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Thank you, again, for your help!Anonymoushttp://www.blogger.com/profile/05794861969385963968noreply@blogger.com1tag:blogger.com,1999:blog-4414222857937475053.post-31911957697521643272013-04-10T23:19:00.001-04:002013-04-10T23:19:09.292-04:00Help Isaiah Earn an iPad!That's right, earn. :0) iPads have been wonderful for people with ASD (Autism Spectrum Disorder) - there are tons of apps to help individuals with Autism that are available on the Apple market (more than on the Android market). Even Isaiah's online school offers apps for the iPad. I have really wanted to get him one, but they are way out of my price range . . . now, there is a way that he can earn one (and continue to earn points toward an iTunes card to purchase apps). :0)<br />
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Here's how you can help . . .<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBtkBs-X0yLhLuiulBpdbe1ABTRkmjfWMMA7faRiA1cBUPHwO9NC7KYTOWLuoPPT652kJMwzV0PrT2jUgFX_xQN9Pqi2x2eJlD08rzzi3lfvYWQLxvdlXukg60G-EPdjNwckV7v_9rRhs_/s1600/photo.PNG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBtkBs-X0yLhLuiulBpdbe1ABTRkmjfWMMA7faRiA1cBUPHwO9NC7KYTOWLuoPPT652kJMwzV0PrT2jUgFX_xQN9Pqi2x2eJlD08rzzi3lfvYWQLxvdlXukg60G-EPdjNwckV7v_9rRhs_/s320/photo.PNG" width="213" /></a></div>
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Visit <a href="http://www.thepuzzlingpiece.com/products_ic.html" target="_blank">The Puzzling Piece</a> and view the items under the "iPad Challenge Pieces" tab. <br />
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Once you select an item, look for the "Challengers Name" box and enter my name or Isaiah's name (if you need to know, just send me a message). :0)<br />
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Place your order and that's it!<br />
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Every item you purchase helps Isaiah earn another point toward his iPad as well as further research and help families afford therapies for their loved ones with Autism. We have to sell 60 items to earn an iPad, so, please feel free to share this with your family and friends (just make sure they know my name or Isaiah's name). :0)<br />
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Thank you, in advance, for your help (and thank you to those who have already placed an order)!Anonymoushttp://www.blogger.com/profile/05794861969385963968noreply@blogger.com0tag:blogger.com,1999:blog-4414222857937475053.post-83445355502779864772013-04-01T23:54:00.004-04:002013-04-01T23:54:42.401-04:00Light it Up Blue for Autism AwarenessWe're lighting it up blue today for World Autism Awareness Day (April 2)! Of course, we'll be lighting it up blue for the whole month of April (April is Autism Awareness Month) . . . :0)<br />
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<br />Anonymoushttp://www.blogger.com/profile/05794861969385963968noreply@blogger.com0tag:blogger.com,1999:blog-4414222857937475053.post-68985603400390303612013-03-13T20:31:00.001-04:002013-03-13T20:31:43.312-04:00Flustered . . .<br />
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That is about the only word I can think of to describe the last appointment Isaiah had at Miami Children's Hospital. Flustered.<br />
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On December 21st, Isaiah had an appointment with Neurology, where much was discussed and labs were decided upon. So, labs were drawn and we went home. I expected not to get an explanation for all of Isaiah's unexplained symptoms at that appointment until labs were back. The labs were mostly genetic work-ups along with organic labs - most were labs that would take about 6 weeks to get back. Well, December 26th, we got a call saying that some of the labs were back and they were elevated and that we were being transferred from Neurology to Neurogenetics. No explanation was given, just that we needed to be seen by Neurogenetics in the Brain Institute. I wondered what all of this was about, but I tried not to worry - I was hopeful that we may get an answer as to what may be affecting Isaiah. <br />
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This brings me to now . . . February 27th. Going into this appointment, I have to admit, I was a bit anxious. I prayed A LOT. I wasn't worried about God bringing us through this, I was worried about hearing the results of the labs. Just hearing the words and a diagnosis that may or may not have a cure or treatments. Words that may or may not bring understanding to the puzzle of my little boy. <br />
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Well, we were called back and began going through a detailed history with a nurse practitioner, who was very thorough and polite. After the history was taken (which, by the way, took about 30 minutes - it was that detailed), she quickly glanced at the labs and said that everything was fine. Wait, what?!? Not that I wasn't happy, but what about the elevated labs that sent us to them in the first place? Oh, wait, she looked over them. :0} So, it turns out Isaiah's pyruvic acid and his lactic acid are elevated. What does that mean? That's partially what left me flustered.<br />
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After that, she proceeded to try and find Isaiah's reflexes . . . :0) Notice, I said, "try". If you have followed my blog for a while, you might recall previous trips to the neurologist where we found out that Isaiah's reflexes were pretty much non-existent. She tried for quite some time, saying that if they were to be found, she would find them. Isaiah entertained her by smirking and kicking exaggeratedly a few seconds after she tapped his knee. She didn't notice and proclaimed, "There it is, I knew I could find it!" I didn't have the heart to tell her that after all that tapping, he had done it on purpose - didn't want to burst her bubble. :0) Anyway, she continued to try and find other reflexes and then just finally gave up to go and get the doctor. <br />
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When she came back, she chatted with us a little while we waited for the doctor. A few minutes later, two doctors came in and introduced themselves. The nurse practitioner went over all of the history with them and two other doctors entered and introduced themselves - this time, one was the doctor we had made the appointment with - the head of the Brain Institute (so, we went from an appointment with the head of Neurology to the head of the Brain Institute). :0} So, that makes one head of the department, one resident, two med students, and a nurse practitioner with the three of us (my mom went with me - I am not a fan of Miami) crammed in that tiny room trying to figure out the mystery that is Isaiah.<br />
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They quickly went to work, checking Isaiah's reflexes, trying to tickle his feet and check test out his neuropathy, asking him questions (always interesting because he doesn't always give an appropriate response), :0) and just examining his physical characteristics. They chatted quietly amongst themselves, pausing only to ask us questions every once in a while and to tell us that we should probably see a cardiologist for the heart concerns. They discussed labs already done, tests already completed, symptoms, and family history, then decided on testing. What I could gather from the conversations were that more labs needed to be done and that they wanted another EEG. Then, they turned to us and said that they wanted to admit him for 72 hours sometime soon (initially this Monday, but I convinced them that later is better, sooo March 18th) so that they could do a video EEG - a in-depth EEG to look for seizures and other abnormal brain activity. The admission will also allow them to do labs that they wouldn't be able to do otherwise. I heard terms like "mitochondrial" and B12 and all sorts of other foreign terms. <br />
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That was it. That was the appointment. Three and a half hours later and they never turned to us and say, "we'd like to do testing for this or that." Only discussion amongst themselves and "we're doing this, see you soon," and out the door they went. The nurse practitioner stayed behind to take us to scheduling and that was it. <br />
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I left more confused and with more questions than before I went in there. What in the world just happened? What's going on with my child? If you don't know what it is, what do you suspect it may be? Why all the testing and what is it for? Are they just to rule out things or are they to prove an idea? I guess I will have to wait and prepare ourselves for this 72 hour admission beginning on March 18th (which is no small feat with my active child). :0}<br />
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I don't mean to sound so negative about the appointment - I know they are trying to answer the same questions that I have. It was just that chaotic and confusing. Let me rephrase that: I think the head of the department was trying to teach the others and it appeared to be chaotic & confusing to us. :0)<br />
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After Miami, St. Petersburg is a breath of fresh air. The next day, Isaiah had a routine appointment with the AIR Clinic (yes, we traveled across the state - two appointments in two days . . . in separate cities, at separate hospitals). Isaiah's doctor is trying to change up his meds to make sure he doesn't get used to anything and to make sure that the meds are still working for him. When I mentioned all of the info. we gleaned from the Miami appointment to his allergist, she agreed that testing for a mitochondrial disease makes sense and that he fits the description. She gave as much encouragement as she could and said that MCH was the best place for Isaiah to be for neurology/neurogenetics - they are world-renowned and one of the top pediatric neurology specialists in the country (she had already done some homework on this before our arrival). <br />
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All in all, we're left without answers right now. I'm not 100% okay with that, but I know that the answer is coming . . . it may not be a comfortable place for us, but everything is going to be okay. God never guaranteed our comfort, he guaranteed He would be there and that He would provide comfort, peace, hope, joy, guidance - the list goes on. I have no doubt that in this season or chapter in our life, whatever you want to call it, I know that God will guide us through this. I know that God has a plan for Isaiah and for this . . . whatever it is. My uneasiness isn't in my faith in Him - I know He has answers and solutions. I know He won't leave us to walk this path alone. This is new for us, but He has already been there - I am so thankful that He holds us in His hands. <br />
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Anonymoushttp://www.blogger.com/profile/05794861969385963968noreply@blogger.com0tag:blogger.com,1999:blog-4414222857937475053.post-59379121278372795472012-12-08T14:55:00.002-05:002012-12-08T14:55:29.190-05:00What's Up? ;0)I know, I know. I haven't blogged in a while. Things have been busy, lately and, well, just haven't gotten much of a chance to blog.<br />
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It's not that Isaiah hasn't had reactions (anaphylaxis) or new symptoms, it's just that it is all becoming so normal to us. So normal, in fact, that I just don't even think about blogging even when I do have the time. At least it hasn't been so bad, though, that I have to keep you updated. :0}<br />
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Let's see . . . where to start? Well, over the summer, Isaiah started having some new symptoms that we still have no clue what's going on. He started turning blue in the middle of the night. So, we had some tests run to figure out what may be the cause. Isaiah had an EKG, EEG, and an echocardiogram His EKG was normal. The other two, not so much. Isaiah's EEG showed that he could possibly be experiencing some kind of seizures and his echocardiogram came with a list of not-so-great (but not-so-bad that it means emergency treatment) results. His echo showed that his left ventricle is enlarged, he has 3 leaky valves, and has a murmur. Oh, and they couldn't rule out a hole in his heart or unusual position/size of an artery. Hmmmm. <br />
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For now, I don't know what all that means - we're waiting on further explanations. We did see a cardiologist, but he had the results from an EKG to go over, the echo results hadn't been given to him at the appointment. Did I mention that my insurance wouldn't cover the echo, so they rejected the claim? Thankfully, the hospital forgot to mention this, so we cannot be charged or billed the $3,000 for the exam - the hospital is stuck with it. <br />
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Anyway, Isaiah has an appointment in a couple of weeks with the head of the pediatric neurology department in Miami to (hopefully) shed some light on all of this (including the neuropathy). Our local neuro was hoping that Miami Children's would be able to do some kind of testing that will give us info on why Isaiah is having the muscular, neuropathy, and now the seizure or heart issues. Hopefully, they will either do the testing right then and there (it's a nice 4-hour trip to Miami) or figure something out and give us some kind of an idea as to what is going on. <br />
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The amount of Epis Isaiah has had in his lifetime has been a concern as far as his heart goes. Seizures? I don't know, but his previous EEG didn't show any seizure activity and (for some reason) this one does. <br />
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As far as Isaiah's masto & allergies, his IgE is well over 3,000 and hasn't shown signs of coming down. He is maxed out on meds and has even started another adult med to control lung symptoms (it's not asthma, but we're treating the symptoms with asthma meds). He takes the adult FDA limit dosage for Xyzal - that's pretty much 4 times the amount normally given to an adult. The other med he is on (for his lungs) isn't supposed to be given to children under the age of 12, but he needed it . . . so, he's on it twice a day. His dosages have been adjusted, but nothing else has really changed.<br />
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On the Autism side of Isaiah :0), he has been put on a medication to help calm him down. :0) Yes, little man bounces off the walls. He is now on two meds for Autism symptoms - one to treat anxiety, one to treat his hyperactivity. :0) Let's just say, he sleeps nicely at night, now. :0)<br />
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As far as my dad, his lab results are showing that he is now in stage 3 renal failure, his blood is thickening (from Waldenstrom's), he has diabetes, and he is anemic. He falls asleep standing up or sitting down . . . yet, he somehow managed to put lights on the house for Christmas! Yes, my dad was on the roof!!!! I don't know how he does it, but maybe the fear of falling to the ground because he fell asleep was enough to keep him awake up there. :0) He has also been really dizzy and has total hearing loss in his "good" ear (dizziness is from damage caused by Meniere's Syndrome and the hearing loss is from Waldenstrom's). <br />
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Other than that, he continues to keep himself busy - he's not the type to sit still for very long . . . unless he's napping. :0} He is very quiet and a bit on the moody side. He does talk a bit when he's in a good mood, but gets really quiet (after fussing a bit) when he is frustrated or upset (usually because he gets confused or isn't able to do what he wants).<br />
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Overall, though, we are blessed. Things could be so much worse and they're not. God continues to bless us with good days and even good moments on bad days. I have no doubt that He will continue to bring His blessings, joy, peace, comfort, direction, and hope to us - that's just who He is. I am grateful for the love that He shows us - and for the mercy He brings us to help us get through the difficult times. <br />
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On top of that, it's my favorite time of year - the time of year that we celebrate the faithfulness and amazing love that God has for us. I love this time of year. It kicks off with Thanksgiving - a time to celebrate how thankful we are for God's provision, etc. Then, there's the Festival of Lights (Chanukah) - 8 days to celebrate and remember God's faithfulness and protection. It "ends" with the greatest gift God ever gave us - the gift of Jesus. I just LOVE this season! Of course, there is also the love and closeness of family, the great and happy music (I get to listen to Bing Crosby!!!!) and all the movies (my favorites being <i>It's a Wonderful Life, White Christmas, Elf, </i>and <i>It's a Meaningful Life </i>(the VeggieTale version of <i>It's a Wonderful Life</i>). :0) <br />
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Since this post has already gotten very long, I will end it with this: what ever you are going through, God will walk with you through it. His love is enough and He will make sure you have all you need.<br />
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Blessings, Happy Belated Thanksgiving, Happy Chanukah (which begins tonight!!!!), and Merry Christmas!<br />
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<br />Anonymoushttp://www.blogger.com/profile/05794861969385963968noreply@blogger.com0tag:blogger.com,1999:blog-4414222857937475053.post-90130265416432431902012-08-26T16:17:00.001-04:002012-08-26T16:17:17.233-04:00Isaiah-Friendly Laundry Soap :0)<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Verdana, sans-serif;">I posted this <a href="http://taylorandsandyspot.blogspot.com/2008/12/new-recipe.html">recipe</a> a while ago, but I had a few people asking me for detailed instructions on how to make this stuff . . . so, here it is. :0) I really like this stuff and it lasts a lot longer than a regular bottle of laundry detergent (and it can be cheaper, too). </span><br />
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<span style="font-family: Verdana, sans-serif;">This soap is great for people with skin sensitivities (like Isaiah) because you use the soap that your skin tolerates. Most of the time I use <a href="http://www.vanicream.com/products/vanicream_cleansing_bar.cfm">Vanicream</a>, but recently I am trying Fells Naptha (just because it cleans the clothes a bit better). The <a href="http://www.vanicream.com/products/vanicream_cleansing_bar.cfm">Vanicream </a>cleansing bar used to be a bit pricier, but it's now only about $3.49 per bar at Walgreens. Fells Naptha is $.97 at Walmart . . . and you use only half of the bar (it's a big bar). <a href="http://www.vanicream.com/products/vanicream_cleansing_bar.cfm">Vanicream </a>has no perfume, so there is no scent to your clothing - you clothes come out of the wash smelling fresh. With Fells Naptha, there is a bit of an odor, but (surprisingly) your clothes don't really pick it up (especially after a second rinse). I have also used Ivory, but Isaiah breaks out from the stuff - you can use whatever bar of soap you prefer. I do not recommend anything with olive oil - your clothes smell good at first (and are amazingly soft), but you will smell like B.O. after a while. You can even use liquid soap (about 2 cups of it), just make sure to reduce the boiling water from 6 cups to 4 cups. </span><br />
<span style="font-family: Verdana, sans-serif;"> To protect Isaiah even further from anything that might be irritating to his skin, I also put our laundry through an extra rinse cycle. </span><br />
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<a href="http://www.walgreens.com/dbimagecache/34533432039_450x450_a.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="product image" border="0" height="320" src="http://www.walgreens.com/dbimagecache/34533432039_450x450_a.jpg" width="320" /></a><a href="http://www.felsnaptha.com/wp-content/themes/fels-naptha-v11/img/felsnaptha/felsnaptha.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Fels-Naptha" border="0" height="212" src="http://www.felsnaptha.com/wp-content/themes/fels-naptha-v11/img/felsnaptha/felsnaptha.png" width="320" /></a></div>
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<span style="font-family: Verdana, sans-serif;">Okay . . . so on to the recipe. Here's what you'll need:</span><br />
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<span style="font-family: Verdana, sans-serif;">A 2 to 3 gallon bucket with a lid (I found mine at Walmart for about $5.00). I found a lid with no writing or decorations on it so that I could write the recipe on the lid with a permanent marker - that way you'll never lose it, even if you have to rewrite the recipe from time to time.</span><br />
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<span style="font-family: Verdana, sans-serif;">1 bar of soap of your choice (or 2 cups of liquid soap of your choice) - we use Fells Naptha ($.97 at Walmart) or <a href="http://www.vanicream.com/products/vanicream_cleansing_bar.cfm">Vanicream</a> ($3.49 at Walgreens).</span><br />
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<span style="font-family: Verdana, sans-serif;">1 box of Borax. The only brand I have found is 20 Mule Team and it costs maybe $3 to $4 at Walmart or Target (yes, one of Isaiah's favorite stores carries this stuff)</span><br />
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<span style="font-family: Verdana, sans-serif;">1 box of Washing Soda. This can be difficult to find, but it works MUCH better than baking soda. Our local Walmart has finally started carrying the stuff - it's about $5.95 per box (it holds about 5 1/2 cups). If you cannot find Washing Soda (by Arm & Hammer - it is also called soda ash), you can make your own using baking soda (fill a wide baking dish/pan with baking soda, heat it at 400 degrees in the oven - stirring occasionally - until it becomes soda ash . . . you will notice a difference in appearance - by the way, I found this neat trick <a href="http://www.pennilessparenting.com/2011/01/homemade-washing-soda.html">here</a>). Or, if all else fails, use baking soda (a large bag/box can be found at Walmart for approximately $3.00). :0) </span><br />
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<span style="font-family: Verdana, sans-serif;">Lots of water. Yes, tap water - it will be just fine to use tap water. :0) You will need about 2 gallons of water for this recipe (6 cups boiling water, 4 cups of hot water, 1 gallon plus 6 cups water).</span><br />
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<span style="font-family: Verdana, sans-serif;">1 large, tall pot. It will need to be large and tall so you have more time before the mixture boils over. :0) </span><br />
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<span style="font-family: Verdana, sans-serif;">Essential oils or fragrance of your choice - this is completely OPTIONAL. Isaiah doesn't do well with fragrances, so we omit this ingredient.</span><br />
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<img alt="" border="0" id="BLOGGER_PHOTO_ID_5285494495585065298" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnXiHhA2T0pf7Su9LFTYElunKkuFX8cV0GFMxT_cVA5hHSQFs8Y4UH5g4fXZteaOZXdZo5MyjL5RmxpPKMUK_cxyC7_nEqVpAKhNf9znaYmG8WRKg_JHhF0PecPFKIvhOC-aRBOQW5244H/s320/IMG_3265.JPG" style="background-color: white; border: 1px solid rgb(180, 95, 6); color: #7f6000; display: block; height: 240px; line-height: 25.600000381469727px; margin: 0px auto 10px; padding: 4px; text-align: center; width: 320px;" /><span style="font-family: Verdana, sans-serif;"><br class="Apple-interchange-newline" /></span><br />
<b><i><span style="font-family: Verdana, sans-serif;">Ingredients:</span></i></b><br />
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<span style="font-family: Verdana, sans-serif;">1 bar of soap, grated (or 1/2 Fells Naptha, grated / 2 cups of liquid soap)</span><br />
<span style="font-family: Verdana, sans-serif;">6 cups of boiling water (or 4 cups, if you're using liquid soap)</span><br />
<span style="font-family: Verdana, sans-serif;">1 cup of Borax</span><br />
<span style="font-family: Verdana, sans-serif;">1 cup of Washing Soda (or baking soda . . . it's up to you - there is a difference)</span><br />
<span style="font-family: Verdana, sans-serif;">1 to 2 Tbsp essential oils or fragrance (OPTIONAL)</span><br />
<span style="font-family: Verdana, sans-serif;">4 cups of hot water</span><br />
<span style="font-family: Verdana, sans-serif;">1 gallon (approx. 16 cups) plus 6 cups of water</span><br />
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<b><i><span style="font-family: Verdana, sans-serif;">Preparation:</span></i></b><br />
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<span style="font-family: Verdana, sans-serif;">Make sure you have your bucket ready with 1 gallon plus 6 cups of water just in case your mixture starts to boil over. Trust me, you will be glad you have that bucket ready when the foamy laundry soap monster rears its ugly head . . . :0) Laundry soap scorching on the hot eye of your stove does not, in any way, smell good . . . just so you know. :0)</span><br />
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<b><i><span style="font-family: Verdana, sans-serif;">Directions:</span></i></b><br />
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<span style="font-family: Verdana, sans-serif;">1. Grate the entire bar of soap (or 1/2 the bar of Fells Naptha). Sure, you could stand there forever waiting for the entire bar of soap to dissolve in all that water . . . grate the soap. :0) I have used an onld fashioned hand grater, but who wants to do that? I have found that my hands are much less achy when I use a food processor. :0)</span><br />
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<img alt="" border="0" id="BLOGGER_PHOTO_ID_5285047079789709778" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiXMKhWHq0xn_kg3qtDYax5L5xrXB1KbkWox8LxFuXns225vZfZD3w29-tQxINXX_QfxKFjwwY1d42RAv1RL8GCffRzNfvBOoUhPhPbuCwZ7KO9BEPytAgzUtihL-vn-p1dmvkg80_gPaF/s320/IMG_3254.JPG" style="background-color: white; border: 1px solid rgb(180, 95, 6); color: #7f6000; cursor: pointer; display: block; height: 240px; line-height: 25.600000381469727px; margin: 0px auto 10px; padding: 4px; text-align: center; width: 320px;" /><span style="font-family: Verdana, sans-serif;"><br class="Apple-interchange-newline" /></span><span style="font-family: Verdana, sans-serif;">2. Bring the 6 cups of water to a boil. Turn off the heat and dissolve the grated bar of soap in the water. If you want to use liquid soap, boil 4 cups of water, turn off the heat, and mix the liquid soap in the water. :0)</span><br />
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<img alt="" border="0" id="BLOGGER_PHOTO_ID_5285079114006869218" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhdbBtjcJl55mMME5bucQYZ5-R-wUhjlRPpsRQ9A_d_Jid4pAhSNOBFbr_P5O5ePiFjfOAbYevDqAmf0y1oxi32hyphenhyphenjhT5jWsTpKXPJESs0gfq3VMt5JRQDQbKpD9HQGbKOSBfNvfUyuySW/s320/IMG_3258.JPG" style="background-color: white; border: 1px solid rgb(180, 95, 6); color: #7f6000; cursor: pointer; display: block; height: 240px; line-height: 25.600000381469727px; margin: 0px auto 10px; padding: 4px; text-align: center; width: 320px;" /><br />
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<span style="font-family: Verdana, sans-serif;">3. Once the soap is completely dissolved and mixed with the water, add 1 cup of Borax. Stir until completely dissolved (you can add up to 2 cups of Borax if you'd like, but 1 cup does just fine).</span><br />
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<img alt="" border="0" id="BLOGGER_PHOTO_ID_5285494474173586274" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBvHjh82-cX-cNQ0kk0ci-vZ6jX32r5ZbBqnIvjCIjH-qzIrLf-eJLIwBTVv8hVkKq5xHGx0Ri-Phb3Od-LIwERmYUz4fdWfnmb7JgNm_aWQrrx4T0TNopsxCqcZx1nt0hM2OGAdOA_Qs5/s320/IMG_3261.JPG" style="background-color: white; border: 1px solid rgb(180, 95, 6); color: #7f6000; cursor: pointer; display: block; height: 320px; line-height: 25.600000381469727px; margin: 0px auto 10px; padding: 4px; text-align: center; width: 240px;" /><span style="font-family: Verdana, sans-serif;"><br /></span><br />
<span style="font-family: Verdana, sans-serif;">4. <i>Slowly</i> add 1 cup of Washing Soda (soda ash / baking soda) to the mixture - SLOWLY. Make sure it dissolves, but at this point you may notice the mixture expanding quickly, so have that bucket ready. It makes a huge mess if you're not watching it. I haven't noticed this quite as much with Fells Naptha, but I have noticed it with the Vanicream-baking soda mixture (it's a lot like mixing baking soda and vinegar). Boy, is that a mess and half to clean up! On the bright side, you'll have a nice clean stove when you're finished. :0)</span><br />
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<a href="http://www.armandhammer.com/siteimages/Product/Large_Vert/e1f2ac0c-ab22-45dc-b0df-057a7e8fda5c.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img alt="Super Washing Soda Booster Large" border="0" src="http://www.armandhammer.com/siteimages/Product/Large_Vert/e1f2ac0c-ab22-45dc-b0df-057a7e8fda5c.png" /></span></a></div>
<img alt="" border="0" id="BLOGGER_PHOTO_ID_5285494484221490386" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-5b7Om340CDNH19BV9m6qvIG0wO-0JmZmU6PYmnfMjTmnTC3v4VkEd5L8qmddhRWs-aFcAmKjz5HqKQ0Uo_C5OpoAF4W5y3X_i5bsBIHWMNL3d2wSWRE3INYNmlMyArc200EnpTmMBjbb/s320/IMG_3256.JPG" style="background-color: white; border: 1px solid rgb(180, 95, 6); color: #7f6000; cursor: pointer; display: block; height: 240px; line-height: 25.600000381469727px; margin: 0px auto 10px; padding: 4px; text-align: center; width: 320px;" /><span style="font-family: Verdana, sans-serif;">
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<span style="font-family: Verdana, sans-serif;">5. Add 4 cups of hot water and mix. OPTIONAL: Add 1 to 2 Tbsp of essential oils/fragrance to the mixture and stir.</span><br />
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<span style="font-family: Verdana, sans-serif;">6. Add the soap mixture to 1 gallon plus 6 cups of water (if it hasn't already been added at this point because it has turned into the puffy laundry soap monster). Mix well (that laundry soap monster will behave after being added to the bucket). </span><br />
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<span style="font-family: Verdana, sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTTf50IsmVhMxBXLj0NsiqTClQn6Q6cPAw2wZMDMBBDPYRQ8p-NYXSkzA9NahU_g9FUr8vOvA6hcbSZbqMYUABomr4valoc728sa6NalYRsltFw2CHsZFjeFmSMtYduG7lFUcr6gsXnTel/s1600-h/IMG_3266.JPG" style="background-color: white; color: #7f6000; line-height: 25.600000381469727px; text-decoration: none;"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5285494489074469442" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTTf50IsmVhMxBXLj0NsiqTClQn6Q6cPAw2wZMDMBBDPYRQ8p-NYXSkzA9NahU_g9FUr8vOvA6hcbSZbqMYUABomr4valoc728sa6NalYRsltFw2CHsZFjeFmSMtYduG7lFUcr6gsXnTel/s320/IMG_3266.JPG" style="border: 1px solid rgb(180, 95, 6); cursor: pointer; display: block; height: 240px; margin: 0px auto 10px; padding: 4px; text-align: center; width: 320px;" /></a><span style="background-color: white;"></span></span><br />
<span style="font-family: Verdana, sans-serif;">7. Let the laundry soap set overnight or for 24 hours before using. You will need to stir the mixture before using it because it will either be one big gelatinous blob (with washing soda) or a thin layer of blob on top of a bunch of liquid (if you used liquid soap/baking soda). I usually mix it the first time with my hands to make sure I get all the clumps. After this, you will need to mix it with a spoon before using. If you use the washing soda, the mixture will be a thick liquid - almost a gel. If you used baking soda, it will be a thinner liquid.</span><br />
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<span style="font-family: Verdana, sans-serif;">Use about 1 cup for a large load of laundry (3/4 of a cup for a medium load, 1/2 cup for a small load). For extra large loads (depending on what your washing machine can handle), I have used up to 1 1/2 cups of laundry soap. </span><br />
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<span style="font-family: Verdana, sans-serif;">Have fun! :0)</span>Anonymoushttp://www.blogger.com/profile/05794861969385963968noreply@blogger.com0tag:blogger.com,1999:blog-4414222857937475053.post-76987393914471509402012-06-25T18:28:00.000-04:002012-06-26T00:14:58.429-04:00Happy Birthday, Little Man!<div class="separator" style="clear: both; text-align: center;">
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I can hardly believe it; you are seven years old today! Seven years ago, I waited for you to take your first breath - it seems like yesterday. In other ways, it seems like a distant memory. You have amazed me with what you have already accomplished - I can hardly wait to see what you will accomplish in the future! You are such a sweet and happy little guy. You make the room a bit brighter the moment you walk in; you always bring a smile to my face and warmth to my heart. You mean the world to me. Happy birthday, sweetheart - I love you to infinity and beyond! <br />
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</tbody></table>Anonymoushttp://www.blogger.com/profile/05794861969385963968noreply@blogger.com0tag:blogger.com,1999:blog-4414222857937475053.post-7342225762271529162012-06-23T17:50:00.000-04:002012-06-23T22:00:27.177-04:00Happy 50th Anniversary, Mom & Dad!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLnUbrsXYvfSfUQC9HflIosFMKmg10XV7jfiiFKXg_DqsxvCG4rSQa89RfyT9rogQd2wet-3H-edJ7xNtpEK2m0Aigv8au-lHO46lD4P69jqciMb8RmYAe2xY2tcsnsd6CFu0SR-niYRcu/s1600/IMG_0005+-+Copy+(2).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLnUbrsXYvfSfUQC9HflIosFMKmg10XV7jfiiFKXg_DqsxvCG4rSQa89RfyT9rogQd2wet-3H-edJ7xNtpEK2m0Aigv8au-lHO46lD4P69jqciMb8RmYAe2xY2tcsnsd6CFu0SR-niYRcu/s320/IMG_0005+-+Copy+(2).jpg" width="210" /></a></div>
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Over the past 50 years, you have helped each other carry life's burdens, sharing in life's joy and sorrow. You have seen many changes and faced many challenges - you have so many memories together. Thank you for all the values and morals you taught us - you have given us an invaluable lesson in life and love, what it takes to be a couple, and what it means to stick together as a family. I love you guys!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkeiqSDAo_P_vNnjtoqTI6KEuRrysiBBh0JPxDJccQBrEAsGXeyQCFpXi4dn_0YLtaP26wpjM7Nt9g5U8x6RnBCAssjOVd6UdscIpOnOGPU7zFPwWVo9w7MfyzXRuh_DWfwthiKPkR9AjO/s1600/50+years+key+to+happy+marriage.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="256" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkeiqSDAo_P_vNnjtoqTI6KEuRrysiBBh0JPxDJccQBrEAsGXeyQCFpXi4dn_0YLtaP26wpjM7Nt9g5U8x6RnBCAssjOVd6UdscIpOnOGPU7zFPwWVo9w7MfyzXRuh_DWfwthiKPkR9AjO/s320/50+years+key+to+happy+marriage.jpg" width="320" /></a></div>Anonymoushttp://www.blogger.com/profile/05794861969385963968noreply@blogger.com0tag:blogger.com,1999:blog-4414222857937475053.post-71344174490217421272012-04-17T00:16:00.005-04:002012-04-17T00:59:53.886-04:00Autism IS My Superpower!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheDH-K-0gaMha7aicc8wG60-A3eRyCPj9mhdfGVl_xfotb83tyubkQPx5MBj1O_eBdWuG98wBJ3jwsQ1yWinAejM5URCbg-6ryFUBSaqoyjmtwM2YimtEW9cI7IC04r7gKaR72mK_Wc3Ur/s1600/Autism+is+my+superpower.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 286px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheDH-K-0gaMha7aicc8wG60-A3eRyCPj9mhdfGVl_xfotb83tyubkQPx5MBj1O_eBdWuG98wBJ3jwsQ1yWinAejM5URCbg-6ryFUBSaqoyjmtwM2YimtEW9cI7IC04r7gKaR72mK_Wc3Ur/s400/Autism+is+my+superpower.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5732228907053949138" /></a><div style="text-align: -webkit-auto;"><span ><span>Can you imagine hearing the words, "your child has <a href="http://www.walknowforautismspeaks.org/tampabay/superisaiah">autism</a>?" In a split second, life - as you know it - has changed. For a different family, every 20 minutes, tomorrow will never be the same. In the United States alone, 1 in 88 children are diagnosed with <a href="http://www.walknowforautismspeaks.org/tampabay/superisaiah">autism</a> (up from 1 in 110 children).</span></span></div><div style="text-align: -webkit-auto;"><span ><span><br /></span></span></div><div style="text-align: -webkit-auto;"><span ><span>I remember hearing those words, though I already knew. I felt breathless. I cried the whole way home from the doctor's office. I called a good friend of mine, who also has a child with <a href="http://www.walknowforautismspeaks.org/tampabay/superisaiah">autism</a>, and she reminded me of one very important thing: Isaiah didn't change - my perspectives had. Isaiah was the same little boy after the appointment as he was before the appointment - and that child was spunky, beautiful, brave, strong, quirky, funny, etc. In many ways, <a href="http://www.walknowforautismspeaks.org/tampabay/superisaiah">autism</a> has made Isaiah who he is. <a href="http://www.walknowforautismspeaks.org/tampabay/superisaiah">Autism</a> was already a part of his wonderful personality. <a href="http://www.walknowforautismspeaks.org/tampabay/superisaiah">Autism</a> <b><i>is</i> </b>his superpower. =0)</span></span></div><div style="text-align: -webkit-auto;"><span ><span><br /></span></span></div><div style="text-align: -webkit-auto;"><span ><span>The reality is, though, some families facing this diagnosis do "lose" their children to the curtain or veil of <a href="http://www.walknowforautismspeaks.org/tampabay/superisaiah">autism</a>. The person they were becoming seems whisked away and silence and blank stares sometimes replace their talkative and expressive selves. Don't get me wrong - <a href="http://www.walknowforautismspeaks.org/tampabay/superisaiah">autism</a> isn't a death sentence and it's not the end of the world. But it does hurt to see your child drift or be snatched away - the child that you had known. In some sense, your child <i>has </i>disappeared. </span></span></div><div style="text-align: -webkit-auto;"><span ><span><br /></span></span></div><div style="text-align: -webkit-auto;"><span ><span><a href="http://www.walknowforautismspeaks.org/tampabay/superisaiah">Autism</a> is one disorder that has fascinated me for years - I have had the honor and the privilege to work with several children on the spectrum over at least the past ten years. I love spending time with kiddos with <a href="http://www.walknowforautismspeaks.org/tampabay/superisaiah">autism</a> - they are amazing and view the world in such a unique way. Sometimes, their perspective is scary and yet it can be beautiful. I love getting glimpses into the world as they see it - as my child sees it . . . even if it is sometimes perplexing. =0) I also love seeing their light-bulb moments, where they have learned something they have been working so hard on to master, and I love the challenge of helping them figure out and deal with the strangeness of "our world".</span></span></div><div style="text-align: -webkit-auto;"><span ><span><br /></span></span></div><div style="text-align: -webkit-auto;"><span ><span>As I have mentioned in an earlier post, I am taking part in an event called <a href="http://www.walknowforautismspeaks.org/tampabay/superisaiah">Walk Now for Autism Speaks</a> (it's coming up this Saturday). You have an opportunity to participate as well, either by walking with us or by supporting <a href="http://www.walknowforautismspeaks.org/tampabay/superisaiah">Team Super Nova</a> (yes, Isaiah's self-proclaimed superhero name). =0) By participating in this event, you are helping to change the future for individuals with <a href="http://www.walknowforautismspeaks.org/tampabay/superisaiah">autism</a>. By walking, you are getting us one step closer to finding what causes <a href="http://www.walknowforautismspeaks.org/tampabay/superisaiah">autism</a>, how to prevent (and I use that word lightly) and treat it (through therapies and ways of teaching), and even helping them find their voice. It's not just about a cure (yes, there are some who long for a cure so they can hear their child say "I love you"), but it's also about helping families and individuals cope with autism in a very overwhelming world. Until we find the solution or the missing piece of this puzzle, we walk to find answers and raise awareness about <a href="http://www.walknowforautismspeaks.org/tampabay/superisaiah">autism</a>.</span></span></div><div style="text-align: -webkit-auto;"><span ><span><br /></span></span></div><div style="text-align: -webkit-auto;"><span ><span>It's not to late to join our team - either by walking with us or by donation (help us reach our goal)! =0) You can find links on my blog (you can click on any of the <a href="http://www.walknowforautismspeaks.org/tampabay/superisaiah">Walk Now</a> links or the word "<a href="http://www.walknowforautismspeaks.org/tampabay/superisaiah">autism</a>" in this post) and even <a href="http://www.walknowforautismspeaks.org/tampabay/superisaiah">here</a> to my donation page. We have a wonderful team so far - but there is still room for you to join. Even if you cannot walk with us, your name will be added to a list of people who are walking with us by financial support. For those who have already donated - thank you, again!!!!!! </span></span></div>Anonymoushttp://www.blogger.com/profile/05794861969385963968noreply@blogger.com0tag:blogger.com,1999:blog-4414222857937475053.post-1717456927496882332012-04-06T11:53:00.006-04:002012-04-06T12:02:52.367-04:00Happiness is . . .<img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 160px; height: 160px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigs4A_zLo5xK6ALCnhq5cjYOyF92-XO3uSWv_2EeYgSZ-M5GUYIVxDka011KQDlxtx0TkV29rzkfjyUnwoaBpBKQDUG2-1vdQ8lxiCFAeyXa-zkURVPmsXHblBNaAZjWP2u0pUNk24SB_m/s400/I-Heart-Faces-button.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5728318350445336802" /><br /><div style="text-align: center;"><span><u><br /></u></span></div><br /><div style="text-align: center;"><br /></div><span><span style="font-size: 100%;">learning to love the beach for the first time. =0)</span></span><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 286px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivHIO0jlwEp3v3Vc2BwfrnRhtpcbkpYJAkACTGvJAh5VUKeBoKC1a5G33bnINrNF_edxkt4RsZl-gVLlpZ34i9x5b7hLWiFZT71lpa8vsZ5gBSQMXxyRQhHAEUxPdS09C4W0liWbT17tEM/s400/IMG_4316.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5728317374920722402" /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">Isaiah used to hate the beach - it was a sensory overload for him. However, this time, he found joy in chasing the waves.</div>Anonymoushttp://www.blogger.com/profile/05794861969385963968noreply@blogger.com1tag:blogger.com,1999:blog-4414222857937475053.post-26902345856457966492012-04-01T18:42:00.001-04:002012-04-01T18:43:08.756-04:00Light it Up Blue for Autism Awareness<div style="text-align: center;"><a href="http://lightitupblue.org/" _fcksavedurl="http://lightitupblue.org" style="font-size: 100%; "><img src="http://www.lightitupblue.org/Markslist/images/lightitup/toolsAndResourcesPage/2011-LIUB-Verticalsmall.jpg" _fcksavedurl="http://www.lightitupblue.org/Markslist/images/lightitup/toolsAndResourcesPage/2011-LIUB-Verticalsmall.jpg" /></a></div>Anonymoushttp://www.blogger.com/profile/05794861969385963968noreply@blogger.com0tag:blogger.com,1999:blog-4414222857937475053.post-51905104805471312712012-03-18T21:40:00.003-04:002012-03-18T22:01:41.480-04:00Light it Up Blue - April 2, 2012<iframe width="560" height="315" src="http://www.youtube.com/embed/y2Ky1ZBK3uI" frameborder="0" allowfullscreen=""></iframe><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: left; "><a href="http://www.lightitupblue.org/">www.lightitupblue.org </a></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: left; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: left; ">Okay, well, since it's late, this will be a very brief post. =0) In addition to lighting it up blue (as in lighting up the outside of our house blue for Autism awareness) I will also be walking on April 21st for Autism Speaks. It was an awesome experience last year and I am excited to attend again this year - hopefully, this time, with Isaiah (weather/outside temperature permitting). If you are interested in walking with me (you can join our team), contact me and I will give you more information. You can also support me as a walker - by clicking here: <a href="http://www.walknowforautismspeaks.org/tampabay/superisaiah">Team Super Nova</a>. If you have trouble clicking on the link, just copy & paste/type in this address: </div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: left; "><br /></div><div style="text-align: center;font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">www.walknowforautismspeaks.org/tampabay/superisaiah </div><div style="text-align: center;font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="text-align: left;font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">If you receive my posts via e-mail, and you happen to lose this post . . . no worries - I will have link on my page as well. =0)</div><div style="text-align: left;font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHB7wp2siIWJ4J7hQK6bBEzgcz-TLfhVT8jONeiklPgBvu-j0VJug5rN8u8KgHuEmtlnyoFgIPIQF8xHfi56TL-v6ME7IHP9DaK_lNZXIqn9VFhxd5Ah9dtWXAzLbVjI8nCOT6AmH6OUbM/s400/SuperNova.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5721419733284490690" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 288px; height: 384px; " /><div></div><span></span><span><span style="font-size: 100%;"></span></span></div><div style="text-align: center;">=0) "Super Nova"</div>Anonymoushttp://www.blogger.com/profile/05794861969385963968noreply@blogger.com0tag:blogger.com,1999:blog-4414222857937475053.post-51038007174190470122012-02-17T17:49:00.008-05:002012-02-17T20:49:17.122-05:00Wow, it has been a long time!<div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-style: normal; font-weight: normal; "><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-style: normal; font-weight: normal; "><span style="font-size: 100%; ">It's not that I haven't had anything to post about, it's just that I haven't had much time to sit down and actually write a post. :0}</span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-style: normal; font-weight: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-style: normal; font-weight: normal; ">Since October, Isaiah continued to have some form of a reaction on an almost weekly basis (sometimes less than a week would pass before another reaction). Each of these reactions </div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-style: normal; font-weight: normal; "><br />involved vomiting as well as fatigue, flushing, itching, leg pain, headaches, slurred speech . . . it wasn't fun and <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Zofran</span> became one of our closest friends (as well as one of those putrid, pink hospital pans that Isaiah carried around with him). He even had one of these episodes on Thanksgiving Day. </div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-style: normal; font-weight: normal; "><br /></div><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-luopYy3qMBugUqYOdQNYCwDlsPoG7LD03ziJLIxhCwgCUrz-ABY33GuZxtjwSmQOvzTxFHsrRdo6WETFi-pNdgHNRAFP7ZrlBjX8ygA1Q6Tpr3DpP9gJC-GXuKCwu5n7ht8BqlZP4nJ0/s400/IMG_29471.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5710279693095247170" /><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">On December 5<span class="blsp-spelling-error" id="SPELLING_ERROR_1">th</span>, we had another appointment with All Children's AIR clinic. We found out that the results were elevated - his urine histamine levels, as well as his <span class="blsp-spelling-error" id="SPELLING_ERROR_2">norepinephrine</span> and a few others. All of these were being looked at to try and determine if Isaiah has a tumor on one of his adrenaline glands (located on his kidneys). This type of tumor can exist for years before it's found. Since Isaiah's levels were </div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br />elevated, but not quite high enough to indicate the <span style="font-size: 100%; ">presence of this tumor, we had to repeat the test. This means more blood work and more convincing my son that peeing in a special cup/bottle is okay . . . as well as convincing him that it is okay to store that big, nasty bottle in the refrigerator (because cups and bottles are for drinking and pee doesn't go in them or the refrigerator). :0)</span></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; "><br /></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">In addition to repeating the testing, the team of doctors decided to increase Isaiah's Zyrtec and <span class="blsp-spelling-error" id="SPELLING_ERROR_3">Atarax</span> - both are to be taken three times a day. His <span class="blsp-spelling-error" id="SPELLING_ERROR_4">Flonase</span> was also increased to an adult dosage to help him with his nasal issues. Of course, all of this means that we have to return to <span class="blsp-spelling-error" id="SPELLING_ERROR_5">ACH's</span> AIR clinic every six weeks for a while - except for the next appointment where we would go over the test results . . . that would be in January.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">The increase in <span class="blsp-spelling-error" id="SPELLING_ERROR_6">meds</span> seemed to do the trick - he didn't have weekly reactions for a while until a week before Christmas and then another really bad episode the day before New Year's Eve (which required a trip to the ER). Thankfully, we had a reaction-free Christmas and enjoyed spending time with my cousin, Nancy.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwzvtf-WW4mil4va0EMxVX96HgT_SAt-i5rMph-sOaS1K9QIZo2rKW90YNoTdD3CDExE5PbW-6HguP71VJdgwx2hbxwdYz-Ho4X9qHS6_wSXVsTZUhX8Bv6AfeEo8ay1cdo4TIerrB8Q3T/s400/P1144751.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5710282125351866674" style="float: left; margin-top: 0px; margin-right: 10px; margin-bottom: 10px; margin-left: 0px; cursor: pointer; width: 300px; height: 400px; " /><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">When we returned to <span class="blsp-spelling-error" id="SPELLING_ERROR_7">ACH</span> in January, the doctors were still concerned that Isaiah's counts were still high - in fact, they had increased. STILL, they are not high enough to say that he has this tumor . . . which was now given a name - a <span class="blsp-spelling-error" id="SPELLING_ERROR_8">pheochromocytoma</span>. They took his results to <span class="blsp-spelling-error" id="SPELLING_ERROR_9">endoc</span></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span class="blsp-spelling-error" id="SPELLING_ERROR_10">rinology</span> (literally a few steps down the hall from the room we were in - they share the same floor) to get an opinion. Endocrinology said that we didn't have to make an appointment with them yet, but they will follow his case in the event that further testing (scans) would be needed. At this time, the test will not be repeated, we will wait to see if things improve or worsen.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">Our next scheduled appointment??? February. :0} </div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">Somewhere in all of this, Isaiah had an appointment with neurology, had an ENG and nerve conduction testing that determined that Isaiah has peripheral <span class="blsp-spelling-error" id="SPELLING_ERROR_11">polyneuropathy</span>. What does that mean? Well, we still don't know, bu</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">t it explains the pain in Isaiah's legs and we were told it is more than likely progressive . . . and may explain Isaiah's <span class="blsp-spelling-error" id="SPELLING_ERROR_12">hypertonia</span> (over-toned muscles) in his legs and <span class="blsp-spelling-error" id="SPELLING_ERROR_13">hypotonia</span> (under-toned muscles) in his upper body. Isaiah is no longer considered to have cerebral palsy (spastic <span class="blsp-spelling-error" id="SPELLING_ERROR_14">diplegia</span>) but something else . . . which means more testing because <span class="blsp-spelling-error" id="SPELLING_ERROR_15">neuropathy</span> is a symptom, not a cause.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">I want to say, very quickly, how proud of Isaiah I am. During all this testing (the ENG and nerve conduction testing, especially), Isaiah has not once cried or thrown a fit. The ENG and nerve testing are painful - even adult manly-men complain about how painful it is (one test involves long needles inserted into your muscles . . . both tests include electrical currents running between two needles/pads). The last bout of blood testing involved 8 tubes of blood being taken and one test being repeated. Isaiah is my hero.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">A few weeks ago, Isaiah had another reaction. This one was different and was . . . well, puzzling. Isaiah became really aggressive - really aggressive. The words coming out of his mouth made no sense whatsoever and he was screaming. It wasn't just one meltdown (??? - I don't know what to call it), but two less than 5 minutes apart from one another and lasting about 20 to 30 minutes each (I have no idea how long I was holding him, but I was beyond exhausted when it was over). After <span class="blsp-spelling-error" id="SPELLING_ERROR_16">Benadryl</span> and other <span class="blsp-spelling-error" id="SPELLING_ERROR_17">meds</span> were given, he calmed down and acted like absolutely nothing had happened. </div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8LZAMnhDQ74zg-S7MQburgcmAwK9_PdUOOEEgxQaJdurvKeX4R1zFlX_fnR0BwY6tOe3XIh6YK6QhxOzt2PsbyzVXAaJ0RvY5E2HUbbKnScUwYM5xBj94iGDOMW1sNeHkrg3PWg84L_Pi/s400/IMG_3614.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5710282152682892258" style="float: left; margin-top: 0px; margin-right: 10px; margin-bottom: 10px; margin-left: 0px; cursor: pointer; width: 400px; height: 267px; " /><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">The next day, Isaiah was completely flushed - head to toe - and breaking out in rashes . . . then <span class="blsp-spelling-error" id="SPELLING_ERROR_18">petechiae</span> . . . then bruises. I have never seen anyone break out in bruises before. It was one of the weirdest things I think I have ever seen . . . and quite scary. </div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">Again, <span class="blsp-spelling-error" id="SPELLING_ERROR_19">meds</span> were given and Isaiah took a nap. I did notify Isaiah's doctors, complete with pictures (one of Isaiah's doctors received the e-mail and called while on vacation in Vietnam . . . AWESOME doctors). No emergency appointment was necessary since we had an appointment just a few weeks away.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">Now, on to yesterday's appointment . . . The <span class="blsp-spelling-error" id="SPELLING_ERROR_20">neurology</span> labs aren't back yet, so that wasn't discussed (did I mention that one of these labs costs $18,000?!? and it's not accepted by insurance . . . yeah, I'm still working on getting that one covered), but the <span class="blsp-spelling-error" id="SPELLING_ERROR_21">neuropathy</span> was discussed. We talked a little more about the strange episode a few weeks before and it was decided that we did not need any further testing at this point - Isaiah has had tests to look at clotting issues in the past, and nothing unusual showed up. However, Isaiah's <span class="blsp-spelling-error" id="SPELLING_ERROR_22">meds</span> were increased . . . again. Instead of Zyrtec, Isaiah was switched back to <span class="blsp-spelling-error" id="SPELLING_ERROR_23">Xyzal</span> (<span class="blsp-spelling-error" id="SPELLING_ERROR_24">YAY</span>!!!!) and now takes the adult dose 4 times a day. His <span class="blsp-spelling-error" id="SPELLING_ERROR_25">Atarax</span> dosage was also increased. We were told that if this does not work, we are looking at something far more serious for Isaiah. What that is, I don't know . . . I didn't ask. More aggressive treatment??? Maybe. A new diagnosis? Probably. It's just too much to think about at this point . . . I just want to at least get through these next six weeks before I think about </div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">all of that. </div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZYisTrZ8X7kZauvaU0q1OHPOrp9Dj7gyQd9tyXsbKTcVdzQXjEcmYTLWk0zGIStRc6d8wSi6EgHgoOfQK5cUW75uA9jmk_3WSy1yTz3TlLmXCKVvhvM8hIPnA6BefXBZmacATmu86DOot/s400/IMG_3533.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5710284435492392738" style="float: left; margin-top: 0px; margin-right: 10px; margin-bottom: 10px; margin-left: 0px; cursor: pointer; width: 300px; height: 400px; " /><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">By our next appointment with the AIR Clinic, Isaiah's <span class="blsp-spelling-error" id="SPELLING_ERROR_26">neuro</span> labs should be back . . . except for maybe the $18,000 one (it depends on insurance and the doctor's suggestions). And, yes, you are reading that correctly (no, it's not a typo) . . . the test costs $18,000 and my insurance considers it to be experimental and they won't cover it. The lab (which is in Georgia and the ONLY lab in the US that runs this test) does not accept Isaiah's secondary insurance. Whatever happens, hopefully, we will find some answers to explain the medical mystery of my son. These tests are not going to mean easy answers, but at least we may have better treatment for his legs/upper body issues that may also explain the odd symptoms we're seeing and reporting to Isaiah's allergists (yes, we know a lot of what is going on is outside of the allergy dept., but they are doing their best to help us get to the right doctors). </div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">Our next appointment is in six weeks . . . I think it's March 29<span class="blsp-spelling-error" id="SPELLING_ERROR_27">th</span> (I'm so thankful we have the technology of cell phones equipped with calendars . . . calendars that notify us of upcoming appointments). :0) Right now, we are relaxing . . . and Isaiah is happily <span class="blsp-spelling-error" id="SPELLING_ERROR_28">stimming</span> (self-stimulating - the repetitive movements seen in people with Autism) over his Star Wars Lego video game (hey, he totally needs a break). :0) </div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">I have another post to write about my dad . . . and, yes, it will be before several months have passed. :0}</div></div>Anonymoushttp://www.blogger.com/profile/05794861969385963968noreply@blogger.com1tag:blogger.com,1999:blog-4414222857937475053.post-84700822044869019402011-11-24T15:38:00.003-05:002011-11-24T15:43:49.557-05:00<div style="text-align: center;"><i><span class="Apple-style-span" ><b>Happy Thanksgiving!!!</b></span></i></div><div style="text-align: center;"><i><span class="Apple-style-span" ><b><br /></b></span></i></div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnAHRhlIrpS-yxNHBQ23LbMyTKccCmrrJyPMlafVPUlsKcAKIUGTZ76J7tTnjWjEWVlzoCrqSp-_U2PUvLZEE4XTqegjC4pMn0jYxbmVrXUfazfZyglxAFcdvUG7VCzBE8ocKOAnxLJcmA/s400/IMG_2868.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5678665022031845586" />Anonymoushttp://www.blogger.com/profile/05794861969385963968noreply@blogger.com0tag:blogger.com,1999:blog-4414222857937475053.post-62969106450596009722011-11-20T22:45:00.004-05:002011-11-22T22:29:00.727-05:00Thankful<img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 286px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh85_M33xpiThm7v28CUO6Quxdhytv4QfbYAEq-rc4PNg-tjz1QrPktt4rGtLCtW-P-oNZQfE7r3ZW6FWnTDzqxjE0yQcEGolgD4asWeT-SVVV88RHe2MzQy2gzge3KxOYYpC-xRFmPg6yx/s400/IMG_2700ed.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5678027672110446642" />I am writing this post with a bit of a heavy heart . . . and, yet, I'm still not sure if that's how I would put it. <div><br /></div><div>Isaiah's hospital visit has been a month ago already. It seems like it was last week, yet when I think about the tests that were done the day we left, it has been an eternity. Friday, the tests came back. The doctor called and said that he would like to see Isaiah before his next appointment (which was scheduled for January 9th). Initially, he said that the 14th or 15th of December would be good. Then he paused and said, "no, sooner - after Thanksgiving. December 1st?" So, December 1st it is. I know that's just a little over a week away, but it seems like another eternity to wait. </div><div><br /></div><div>I don't have any details, other than he mentioned that we need to see another doctor, but it will all be discussed at the appointment. I know we have had tests like these done before . . . serious ones . . . but none have ever been discussed like this before - there is a bit of urgency with this one. We have always been given results over the phone or at least a portion of the results. We have waited for the doctor to be paged, waited for a nurse to call us back, an appointment rescheduled to a later date to accommodate the head doctor's schedule, but never an appointment rescheduled for an earlier appointment. The doctor even sounded shaken. It's a bit unnerving, to say the least.</div><div><br /></div><div>So, why did I name this post "Thankful?" Simply because I'm thankful. There is so much to be thankful for. I'm thankful they didn't schedule the appointment for this week. I'm thankful that the news isn't so bad that we had to make the 3-hour trip over there to receive some kind of bad news before Thanksgiving. I'm thankful that we can spend Thanksgiving here at home and not in a hospital. I'm thankful that God is still in control of whatever is going on with Isaiah's little body, even when it may seem that He may have taken His eye off the situation for a moment. I'm thankful that He never takes His eye off a situation - He never leaves us nor forgets us. I'm thankful that whatever news the doctors may have for us in St. Pete, that God is still our healer, our comforter, our peace, our strength, our joy. I'm also thankful that God is our strong tower, our refuge, and our sanity. I'm thankful for a loving family and for encouraging friends. I'm thankful for such a wonderful little boy who brings so much joy and so much inspiration - I'm thankful for every moment that I have with him. </div><div><br /></div><div>As always, I will write more when I know more. For right now, however, I have to prepare for Thanksgiving day - there's a lot to do in a little bit of time. =0) We're going to have dinner in our home . . . and then, we get to put up Christmas lights . . . and . . . our tree!!!!! =0) Can you tell that this is my most favorite time of year??? Yes, we are already getting in the mood for Christmas - we are already listening to Christmas music and watching Christmas movies. =0) Hey, c'mon - it is, after all, the most wonderful time of the year! =0)</div>Anonymoushttp://www.blogger.com/profile/05794861969385963968noreply@blogger.com1tag:blogger.com,1999:blog-4414222857937475053.post-35958811481784648412011-11-11T11:11:00.001-05:002011-11-11T11:39:28.871-05:00Thank You . . .. . . to all who have served and are serving in our Nation's military - and especially to those who have lost their lives. You are not forgotten for your sacrifices to bring freedom and peace to the rest of us. May God continue to bless and watch over you.<div><br /></div><div>Thank you, Uncle Bob, Uncle Raymond, Uncle Jerry (Uncle Cherry) :0), Uncle Jim, Uncle June, Uncle Rob, Uncle Soloman, Ronnie, Aldith, Travis, Al and many more.</div><div><br /></div><div style="text-align: center;">"Greater love has no one than this: to lay his life down for a friend." (John 15:13).</div>Anonymoushttp://www.blogger.com/profile/05794861969385963968noreply@blogger.com0tag:blogger.com,1999:blog-4414222857937475053.post-6694215300410703872011-11-07T21:04:00.002-05:002011-11-08T21:03:22.178-05:00Testing, testing . . .<img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMFQnwkmsfwD8tgwAHge7nHcYxt5a0fDmg8VJgHkTMWNwK7XbO3WmjpTzBwCuW0aPWoxu0xs-6mi9povBpjw-abffeul9fUTQpM03WjPooNPqtNMPO3LzYKDOe7xOMCbuDZPe2p7jknYnf/s400/232323232-fp5325--nu%253D834--93%253B-23--WSNRCG%253D338569-56632%253Bnu0mrj.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5672434551858845794" style="float: left; margin-top: 0px; margin-right: 10px; margin-bottom: 10px; margin-left: 0px; cursor: pointer; width: 300px; height: 400px; " /><br /><div>It took me a bit to sit down and actually write this post; not because it was necessarily difficult, but because I just haven't found the time. =0} <div><br /></div><div>Anyway, Isaiah spent the week in the hospital last month (October 3rd - October 6th) with a stay-over at the Ronald McDonald house Thursday evening (the 6th). No worries - it wasn't because Isaiah had another reaction, but it was because Isaiah's doctor wanted to observe him and run some tests (basically, it was what I had written about in my last post).</div><div><br /></div><div>While I was hoping for an answer as to why Isaiah's reactions are so often and severe, there were no answers. He ended up having a small reaction, which ended the observation period and gave us a discharge from the hospital (his doctors - he had three - were trying to find a way to keep him). Since he had to be given meds to stop the reaction, the observation without meds was over . . . he made it less than 3 days off of meds. =0( This reaction wasn't as bad as it could have been, but without intervention, it would have been anaphylaxis (his lips and tongue were swelling, his throat was itching, he had a headache, a stomach ache, was gagging, he was flushed, and he had those lovely red spots).</div><div><div><br /></div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKjPg2LEK5W_gf1m7zfZIa0HuErdK20SgZnEfSXaJ8AG5dKiMO4UIRriDU6Sw5pjTOkqyR0cqc8sJIzLgMqDUmX8bCM3obceVPI_OMrUGYE29iiERXBJKGhFmx4TNs7NxsVju7AMmk6HY8/s400/232323232-fp53245-nu%253D834--93%253B-23--WSNRCG%253D33856975%253B532%253Bnu0mrj.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5672434558282475394" style="float: left; margin-top: 0px; margin-right: 10px; margin-bottom: 10px; margin-left: 0px; cursor: pointer; width: 400px; height: 300px; " /><div>Other than that, our hospital stay was an adventure where Isaiah was totally spoiled! =0) The activity cart came by Isaiah's room at least twice a day, but made it around more like three times a day. Every time the cart stopped by, Isaiah got something - a large board game, painting activities, a pillowcase, a toy, something . . . and the RMcD house gave him a large stuffed bear ("Teddy"). He could also order icees (which, when they're safe for him, are a HUGE treat for him). Yes, he had an icee for <i>every</i> meal! =0) On top of that, he had a 47" HD plasma screen TV (complete with cable) that also had movies, the Internet, and games. Mommy and Nai-Nai also had a TV, but it was more or less a 17 " screen with cable (no, mommies weren't excluded from the spoiling - I was given hot coffee and breakfast every morning). =0) By the time we left, we had a few extra bags to carry to the car. =0)</div><div><br /></div><div>They also had an activity time where the kiddos could leave their rooms to go to the Children's Auditorium, if they were allowed/able to. While there, children could play the piano, play video games, shoot some pool, paint/draw, or play with various toys. They even planned a bingo and trivia time where the kiddos could win prizes - even the kiddos who weren't able to leave their rooms were able to play, thanks to their TVs.</div><div><br /></div><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqA-FwuVwrA0cg0t48jR5q37bCj6De1iLsOl1OFKTi2rUL9-UYZVw4FLzbDrdwU4Z2Ju8weBGGEg4nvwAM0yqtvkfUZsTkHGA8SlL85h0mzIaZrbesbBcycPQuLaZn8_66OTzlqEpOh3tX/s400/232323232-fp5326%253B-nu%253D834--93%253B-23--WSNRCG%253D338569-54432%253Bnu0mrj.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5672434553531772754" /><div>Then, there was also music therapy, an awesome play room with a gorgeous view and a jukebox, and a special visitor. Yes, Isaiah got to meet . . . Ronald McDonald! =0) I don't know if Isaiah really knows who he is, but he was still excited to see him. =0) Ronald also brought Isaiah a toy </div><div>- they really go out for these kiddos. Then, there is the outdoor pirate ship and exercise time (Isaiah didn't get to participate in that one because of the heat).</div><div><br /></div><div>In some ways, the hospital tried to make things as fun as possible to make the stay more of a vacation than a hospital stay . . . but there are still the IVs, the monitors, and the looks of pain and despair on little faces. There were so many heartbreaking stories - neighbors to Isaiah's room, to be more precise. Our stay on 8 South will not soon be forgotten.</div><div><br /></div><div>As far as things with Isaiah go, his heart rate bounced somewhere between 56 and 148. Yeah, a bit scary. The alarm was difficult to get used to, but it would scare him when his heart rate would get low, which would make it beat a bit faster (usually around 70/80). Basically, I was told that he has an irregular heart beat, but it may just be normal for him. However, it never really acted up for them - he becomes very tired and pale when it acts up.</div><div><br /></div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimOwUW-UaYkHwiWcRi_XPJNeryrZC-XX4dn-gmS-iISQZ5xwY6mSF9kHrqxArcSM0VaDhy0vyL4wIvQNltYHAkpkTYZUNgzv2ChYgNePNrvv7WuQU5iBE4FMfWlBT4TEqLATulvUruLfj0/s400/232323232-fp53242-nu%253D834--93%253B-23--WSNRCG%253D33856-54-432%253Bnu0mrj.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5672434562836675586" style="float: left; margin-top: 0px; margin-right: 10px; margin-bottom: 10px; margin-left: 0px; cursor: pointer; width: 300px; height: 400px; " /><div>As far as the testing, the tests earlier in the week came back normal or the same as they have been (his eosinophils stayed the same and are still very high and some of his allergies have actually gotten worse - corn and dust, to be exact). He had more labs drawn before we were discharged Thursday evening (yes, evening . . . 7:30 to be exact). Hopefully, we will get those results sometime soon, but we're not sure when. The doctors are looking for a rare autoimmune disorder, so the labs had to be sent to a lab where the tests could actually be done - they were sent to a Jewish lab somewhere here in the states.</div><div><br /></div><div>Just this past week, Isaiah had nerve testing done - last Tuesday. He had both nerve tests done: an electromyogram (EMG) and a nerve conduction velocity test (NCV). I am very proud of Isaiah and completely amazed at how well he did. Not only did he have to stay still (thank you, i-Pod), but he also had to stay still through all of the shocks. He didn't cry <i style="font-weight: bold; ">at all</i>. He didn't even make a noise, apart from a small "ow" with the very last shock (nerve conduction tests use electrical shocks to test nerves, just in case you were wondering . . . and yes, they can be very painful, especially in the more sensitive areas). The doctor initially thought we wouldn't be able to do the entire test on Isaiah, however, Isaiah made it through all of it! The doctor smile and told us that he has had grown men jump, cry, scream, and threaten him because of these tests - he was impressed by Isaiah's willingness to just lay there and take whatever the test threw at him. </div><div><br /></div><div>We were given the test results for the NCV and EMG. It looks like Isaiah has neuropathy. It's not severe, but it's definitely there. What does that mean? I don't know. We will have to wait and see Isaiah's regular neurologist to figure out what this means for him. What I do know, though, is that Isaiah's regular neuro seems to think that Isaiah does not have a minor form of CP, but something else (sheesh, is this some sort of a repetitive response???). Since Isaiah has no reflexes/hyporeflexia (except for a small bit in his ankles), CP is not causing the muscle and tendon tightness Isaiah is having (CP causes hyperreflexia/exaggerated reflexes). So . . . is all of this connected to everything Isaiah is going through???? No clue. Maybe the tests the allergists ran in the hospital will give us more information . . . or maybe the neuro will have an idea. We'll have to wait and see, as usual.</div><div><br /></div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuQO3hjyeO6de-5hzgfSjs7jRtLsfVEWELptRGcOSp-RwgTQ2Cymc0Mgua0jrOxVURdIj5a9a7XWtsx3nXTaeVZ537z3MC1D9gEgIjxkfhbA-QmhfLPGrxsPUS0z22fCGXDdQTny_wpVql/s400/232323232-fp53242-nu%253D834--93%253B-23--WSNRCG%253D33856-54-732%253Bnu0mrj.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5672438678446405410" style="float: left; margin-top: 0px; margin-right: 10px; margin-bottom: 10px; margin-left: 0px; cursor: pointer; width: 400px; height: 300px; " /><div>Since our trip to the hospital, Isaiah's body is finding it difficult to readjust (Isaiah had to be off a few meds for one of the tests). He has had weekly episodes, though we haven't had to use the Epi with these reactions. These are just the usual masto reactions - tummy pain, leg pain, nausea, vomiting, flushing, itching, mood swings, the red dots, swelling . . . I'm beginning to wonder if <i>this</i> is our new "normal". I surely hope not - I hate seeing him go through all of this. He's such a trooper, though, and manages to smile through it all. </div><div><br /></div><div>I know all of this seems so overwhelming, but it really isn't. There <i>is</i> a lot going on, but it's nothing all that unusal for <i style="font-weight: bold; ">our</i> household - it's our "normal" ("normal" just needs to be readjusted every once in a while). =0) It's not depressing, though it can be frustrating at times. Honestly, we just do what we have to and take one step at a time - as my mom says, we just live like we're supposed to . . . are all these things really supposed to bother us? There's no time to sit and think about the "what if's" or "if only's". From the outside, it looks like our life is just one glob of chaos. However, it's not that way at all . . . I <i><b>can </b></i>tell you, I would have no idea what to do with myself if things weren't the way they are! =0)</div><div><br /></div><div>Even in the roughest times - the times where Isaiah is going through a reaction of some kind - it's comforting to know that in all that we are going through, God has never left our side and that everything happening is within His control. He's not going to leave us to deal with the uncertainties on our own - He's right here with us and He understands when things are frustrating and painful for us. I can't give you an answer if God had all this planned for us - trials and all - but I can say that He's not allowing us to go through this for nothing. I know that there is something in store, a reason why Isaiah and my dad (and my mom and I) are going through this . . . even though we don't know what that is. =0) There is actually a little peace in not knowing why . . . I may not want to know! =0)</div><div><br /></div><div>Anyway, I will keep you posted as I hear back from the lab/labs and doctors. I am hoping that the tests will come back this week . . . I'm trying really hard not to be the psycho mom that calls daily for test results! ;0) </div><div><div style="text-align: center;"><br /></div></div><div style="text-align: center;"><br /></div><div style="text-align: center;"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhb_f77wUw8egckxCiAQSSdb5QNW1Cn454VBrHCqa50u8-Xgati3f16CK8zVAEZ6NNWZcQFoeN6V9emawVvXitYj7URx2a6G7ST6aaT_yTXL2Im7b606bdriQVsMI7zsGBPxDXWhiB0b9s4/s400/232323232-fp53272-nu%253D834--93%253B-23--WSNRCG%253D338572-4%253B532%253Bnu0mrj.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5672434566401517010" style="float: left; margin-top: 0px; margin-right: 10px; margin-bottom: 10px; margin-left: 0px; cursor: pointer; width: 400px; height: 300px; " /></div><div style="text-align: center;"><br /></div><div><br /></div><div style="text-align: center;"><br /></div><div style="text-align: center;"><br /></div><div><br /></div><div style="text-align: center;"><br /></div><div><br /></div><div><br /></div><div style="text-align: center;"><br /></div><div><br /></div><div><br /></div><div><br /></div><div style="text-align: center;"><br /></div><div><br /></div><div><br /></div><div style="text-align: center;"><br /></div><div>God <i style="font-weight: bold; ">is</i> good!</div></div></div>Anonymoushttp://www.blogger.com/profile/05794861969385963968noreply@blogger.com0tag:blogger.com,1999:blog-4414222857937475053.post-65687206660650625922011-11-05T17:53:00.000-04:002011-11-05T17:53:22.090-04:00My Dad . . .<img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 286px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjY_zFe2rs_PMC1aiPDIaOsAE6FNmUaBTUKxnflhKH_P11I5UAizDJ1hWZ-7rQiQgKPZWSvOA7Aq3oiDNGVJdadVFDcppl7QlxrAb1NoEmmVm-SKIgGmMItESXfVpRgBTslYYQrP3_2bokM/s400/IMG_2682ed1.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5671614942398441074" />I know you are wondering about my dad . . . <div><br /></div><div>Things with him have been going okay - not great, but okay. He isn't feeling his best and hasn't been able to mow the lawn for himself for a few months now (my nephew steps in and helps out). He is in quite a bit of pain and has also been having nose bleeds (one of the symptoms of Waldenstrom's). As far as lab work, his labs are saying that the disease is progressing, he has stage two chronic kidney failure, and he was just diagnosed with diabetes. It's so frustrating to see him go through all of this - especially when he becomes frustrated because he can't do what he wants when he wants . . . or forgets what he's doing altogether. </div><div><br /></div><div>On the memory front . . . he gets quite confused at times. He gets lost in town and so he rarely goes anywhere unless he is with my mom or myself (and we drive most of the time). He doesn't like to do too much by himself and won't do too much without my mom by his side. It's kind of cute, but at the same time, so uncharacteristic of him . . . and it drives my mom nuts! =0) </div><div><br /></div><div>He sleeps a lot, but does try to stay busy - it's how he ignores his pain. He waters and cares for his lawn several times a day (boy, I hope nobody from the water division is reading this). ;0) By the way, you're not supposed to water your lawn daily in FL. Oh well, I'd like to see one of the officials explain that to my dad. =0) He enjoys spending time with the birds and squirrels - he has named and recognizes the majority of the squirrels that visit our bird feeders . . . or squirrel feeders (my dad built feeders and houses just for the squirrels). =0) He also spends time with Isaiah - he loves getting Isaiah to say funny phrases to us. </div><div><br /></div><div>Dad's moods are changing, too. He's not as talkative or friendly. Not that he's mean, he just doesn't talk. When we try to talk to him, he is very short and seems to stare off into the distance at times. Sometimes, it's because he can't hear very well. Other times, he is in his own little world. Much to my chagrin (wink-wink), he <i>loves</i> watching his blue grass/country shows. Insert shivers here - two types of music I cannot stand! =0) However, in describing my dad's personality, you cannot leave his love for those types of music out. It's totally part of who he is. </div><div><br /></div><div>At times, he feels alone and forgotten - my dad thrived on being needed and being useful. Since he can't hear well, he feels cut-off from conversation and is afraid of talking because he doesn't want to talk to loudly or doesn't want to misunderstand the conversation - it embarrasses him. There are times where he questions his relationship with God - has God forgotten him or is he being punished? I know that he knows the answer to those questions, but it still bothers him. Going to church, for him, has been rough - he can't hear what's being said, he's no longer needed or feels useful, and he doesn't feel comfortable talking or singing (my dad used to love to sing). I wish I could make it all better for him or help him find a sense of peace and comfort in this time in his life. </div><div><br /></div><div>Thank you for your continued prayers for my dad - he needs them! He is frustrated and scared, though he wouldn't dare tell you - that's just my dad. He is in a lot of pain, which won't get any better without your prayers. There are no pain medications that will touch the pain he experiences - he has had too much nerve damage and cannot take some of the meds that barely help him because of side effects. I know God is listening to him and trying to bring comfort and peace - we can see that, at times. My dad knows, too . . . Please continue to pray for healing, strength, comfort, and peace . . . and for a renewed sense of joy, purpose, and meaningfulness for my dad.</div><div><br /></div><div>Blessings</div><div> </div>Anonymoushttp://www.blogger.com/profile/05794861969385963968noreply@blogger.com1tag:blogger.com,1999:blog-4414222857937475053.post-83417881708229195932011-09-28T20:46:00.004-04:002011-10-01T21:37:48.232-04:00Wow, has it been that long???Could it really be that my last post was in JULY?!? =0) <div><br /></div><div>Just because I haven't posted, it doesn't mean that we haven't had much going on. In fact, for those of you who don't get to see posts on Facebook, things have been crazy . . . <b><i>especially </i></b>for the last 3 weeks. </div><div><br /></div><div>Isaiah has had several bad days - more bad days than good, to be exact. Of course, there were three days that were horrible. Beginning three weeks ago, Isaiah's allergist from St. Pete called to discuss a few things . . . one of them being that she was concerned about Isaiah's counts increasing and the fact that the insurances are having issues with all of the meds Isaiah is on (basically, they don't want to cover the meds). She has been doing a lot of research concerning Isaiah and thought that it might be a good idea to do some testing . . . this testing would require Isaiah to be off meds for a few days to get an accurate count. Now, the test is a simple test involving a 24-hour urine sample . . . no biggie, right? Putting ASD aside, the no meds thing is scary and dangerous for Isaiah. Just to make the insurance happy, though, I agreed to the test. So, off of meds Isaiah went . . . </div><div><br /></div><div>IT WAS AWFUL! The first day wasn't so bad . . . the second was worse than the first, but not too bad, either. The third day, however, brought on hives, flushing, pain, lack of appetite and nausea . . . basically, all of the symptoms associated with masto and allergies. By Friday, Isaiah was on the sofa completely sacked out and pale with an irregular heartbeat. So, off to the hospital we went. He was okay, but not great. He actually said he was hurting. His heart rate was high, but his blood pressure was stable and he seemed to be breathing okay. We ended up leaving the hospital with a new pink pan in hand and Zofran, determined NOT to use the Epi or any other antihistamine so that we could get through this test . . . however, Isaiah had begun vomiting (thanks to Zofran, though, the vomiting was subdued).</div><div><br /></div><div>By Sunday (the beginning of the 24-hour test), Isaiah was feeling awful. He complained about an itchy throat and pain and carried the pink pan around with him. I knew something awful was going to happen, but I was hoping we could get through the test without having to intervene with meds (which would ruin the test). Well, it didn't happen. Sunday evening, Isaiah went into another episode of anaphylaxis. He was weak (he couldn't stand), he was swelling, flushed (red), screaming that has throat was itching (while trying to put his hands in his mouth to scratch), gagging . . . and then he turned blue. AGH! So, Epi Pen #1 was given . . . the adult-dose Epi. Within 5 minutes, Isaiah was <i>wired.</i> </div><div><br /></div><div>When the ambulance arrived, they began to assess him - tachycardia, BP was okay, O2 sats were a smidge low. So, they gave him oxygen and we were on our way to the ER. In mid-transport, Isaiah began spacing out, again. He wasn't making any sense at all and then just stopped talking. He turned bright red, broke out in hives . . . everywhere . . . and then began having trouble breathing, again. His O2 sats dropped into the 80s (not bad, but not so good, either) and yet another Epi was given. </div><div><br /></div><div>At the hospital, he was placed on monitors and given an IV . . . the usual. He was still covered with hives, red, <i>very </i> swollen (he couldn't close his mouth) and still on oxygen. He looked awful. He wasn't talking anymore, either. I felt so bad for him . . . he was so itchy and achy. His heart rate was all over the place - usually staying between 143 and 60. Yes, he was setting off alarms with that low number. </div><div><br /></div><div>Oh, and there were those lovely red spots (the spots I like to call disco-light spots).</div><div><br /></div><div>After Isaiah received all of his meds, his O2 sats stabilized, and his heart rate issues settled down, we were discharged. The test was messed up, so there won't be any results from it (though we did submit it to the lab). </div><div><br /></div><div>The following week, things were still going crazy for Isaiah. He was back on his meds the very next morning along with a very high dose of Prednisone, so one would think he would have eaten everything in sight . . . no such luck, but he did have his appetite back (sort-of). =0} He was doing the same things he did while off meds (random hives, flushing, pain . . .). </div><div><br /></div><div>Then, the following Sunday, it happened AGAIN. Itchy throat, swelling, pain, irregular heart beats, abnormal BP, and he turned blue . . . <b><i>again</i></b>. So another Epi and we were off to the ER. No steroids were given this time, since he had just come off the steroids that Friday. So, an IV and a few hours of observation and we were out the door. I must say, this episode wasn't as bad as the previous week's, but still. Poor kiddo! Three Epis in a little over a week! </div><div><br /></div><div>His allergist called, very concerned, and said that she wants to admit him to the hospital for observation in the very near future . . . for <i style="font-weight: bold; ">at least</i> 72 hours. Then, she said that if he has another episode before he is admitted in St. Pete, he will be transported from our local ER to All Children's. </div><div><br /></div><div>Sorry, if I'm rambling . . . a lot of info. to share at one time. </div><div><br /></div><div>Basically, the concern is the amount of times Isaiah has anaphylaxed (yes, my child has made that word a verb) over his lifetime and the amount of times he had to receive the Epi Pen (epinephrine, or adrenaline). He has had the Epi close to 30 times in his 6 years of life . . . that's a lot. They were all necessary, that's not in question. What <i style="font-weight: bold; ">is </i>in question is what it has done to him, if anything . . . we're hoping that it hasn't. Epinephrine can cause heart damage and his heart is having problems handling reactions and seems to still be reacting to all of this. He is still having issues with a high heart rate that isn't steady - it beats quickly and slows suddenly, then speeds back up. It's a roller coaster of a heart beat and it totally scares me. This is new territory and I don't like it at all. He has been pale with those dark-circled eyes and definitely not his normal energetic self. Even today, he stayed on the sofa, "napping" as he calls it. He has been carrying around that pink pan saying his tummy hurts (VERY unusual for him, as he usually doesn't tell us about pain) and won't even finish his favorite foods. He hasn't lost weight (thankfully), but he just doesn't feel well, either. He gets so pale. He even tires out at dance and gymnastics - his instructors have noticed and allow him to take breaks (HE NEVER TAKES BREAKS!!!!).</div><div><br /></div><div>As unusual as all of this is for us (especially, the length of time these symptoms have gone on), I know God has it all in His hands. I'm scared, but only because I don't want to see my son go through this, not because I don't trust what God has planned. I still hear that song every day in my head that talks about His blessings in rain drops and His healing coming through tears. He is still in control and still just as mighty as when everything is just peachy for us. He is the same - He is our constant and that brings me peace. He's not going to let Isaiah walk through all of this for nothing, and we're surely not going to walk it alone. </div><div><br /></div><div>I wish Isaiah could catch a break, though. He misses out on so much. I would love, for once, to take him to the beach or the park during the summer or just go to the zoo. I would love to have an ice cream party or go to the movie theater to watch a movie before it comes out on DVD . . . before the movie is spoiled by someone else who saw it before us. </div><div><br /></div><div>In all of that, though, there are things we do to have similar experiences. For movies, we buy it when it comes out. Expensive, yes . . . but well worth it. We pop popcorn and sit in front of the TV . . . lights on, because he <i style="font-weight: bold; ">hates</i> the dark. =0) We occasionally make our own ice cream from rice milk, go to the beach when it cools down (he <i style="font-weight: bold; ">hates</i> sand and he's afraid of the ocean, but it's still a nice experience and there are fewer people), and the park . . . well, we eventually get there, too . . . sometimes. =0} We have snuggle time and we play Wii or Play Station II together . . . and play lots of Angry Birds. We also have story time together and we make things to decorate the house. </div><div><br /></div><div>Well, I will keep you posted on the happenings when he is admitted - we're still working out the details and making sure all the doctors and nurses caring for Isaiah are well-informed. I believe there will even be a few extra doctors (specialists) who will be called to give their advice and recommendations. For now . . . I have to get ready to go to St. Pete. =0} (Trust me, I will keep you posted with pictures) =0)</div>Anonymoushttp://www.blogger.com/profile/05794861969385963968noreply@blogger.com1tag:blogger.com,1999:blog-4414222857937475053.post-90143550412058859322011-07-26T13:57:00.006-04:002011-07-26T14:31:05.265-04:00I Heart Faces Photo Challenge: Water<div style="text-align: center;"><br /></div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSbnnYqK7S8JOTCszusOMN40ZPi-tp9bMyHMHNSBZXYUOgOD-xAJWsceBTRmEon-eov1O5ldvlH1p3t9Gq7ZX41ahvOTj6n5WYKtBM-p581w9m9tEmDHKtcpfAbLjpxnbFlmFZPF7_oysR/s400/IMG_7231ed2.jpg" style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" border="0" alt="" id="BLOGGER_PHOTO_ID_5633728719933526370" /><div style="text-align: center;"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcYQtInyMR29eO1l08Y0jJYhileYwKJSUQEEWpIEzsHTHykWX5P4FmomAmuvQNpWyO9Z4zpnh9ZjqugkS7AbrforkJOjuZmXPMUsubw0kMkbcD97nWl_P5u9mJgoencN5Mwlft-1ZdqVZ5/s200/I_Heart_Faces_noborder_125x100.jpg" style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 125px; height: 100px;" border="0" alt="" id="BLOGGER_PHOTO_ID_5633729476039364402" /></div><div>Yup, I'm trying it again. =0) <a href="http://www.iheartfaces.com/2011/07/photo-challenge-water/"> I Heart Faces</a> has another photo challenge (they have one every week, I just don't always enter them). I love taking pictures, and Isaiah just so happens to be my favorite subject! =0)</div><div style="text-align: center;"><br /></div><div>This week's challenge was <b><i><a href="http://www.iheartfaces.com/2011/07/photo-challenge-water/">Water</a></i></b>, since it's summer and all. =0) I love taking pictures of Isaiah when he's swimming - I can get candid shots with him smiling . . . genuinely smiling. =0) He seems to really come alive when he's swimming, so . . . I get lots of cute pictures. </div><div><br /></div><div>I have to admit, this photo was taken while I was doing a no-no: I took my camera into the pool. YIKES! No worries, I didn't drop it and it didn't even get a drop of water on it . . . trust me, I was holding it so tightly I think I left finger prints in the plastic! ;0) </div><div><br /></div><div>Anyway, Isaiah was in his own little world when I got this shot - he didn't even know I had taken it. I just love candid photos!</div>Anonymoushttp://www.blogger.com/profile/05794861969385963968noreply@blogger.com3tag:blogger.com,1999:blog-4414222857937475053.post-3045669094529735712011-07-23T18:49:00.008-04:002011-07-23T23:07:15.255-04:00God is Awesome<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMzgm7gMIIpaehtyiRNkWiHDYPSmcx6kQqpPpZkX_01fm2pcyE_cMyTOAoB-aSz8c8JrY-T8rLZ1PJxw7IZqVGOFWG1UdRSHsoOu-lE_MEro4GlK4ioqmHEle318F9Ppw15PVEsosIDr2J/s1600/IMG_1086ed2.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMzgm7gMIIpaehtyiRNkWiHDYPSmcx6kQqpPpZkX_01fm2pcyE_cMyTOAoB-aSz8c8JrY-T8rLZ1PJxw7IZqVGOFWG1UdRSHsoOu-lE_MEro4GlK4ioqmHEle318F9Ppw15PVEsosIDr2J/s400/IMG_1086ed2.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5632730475497512658" /></a>I wasn't sure how to begin this post. I am really not even sure I can put all of my thoughts into words to write this post. All I know I can say is that God is amazing and I'm thankful for His blessings.<div><br /></div><div>"Everyone needs an Isaiah in their lives to experience God's greatness," that's what my mom keeps saying since a few days ago, before we received the bad news. It's true. While God can show us His greatness in all that brings happiness and joy, He also show us His greatness in what brings us pain. </div><div><br /></div><div>Isaiah had another appointment yesterday with the AIR Clinic. Even though Isaiah's doctor had just returned from maternity leave, still glowing 3 months after the birth of her daughter, the appointment was . . . heavy is all I can think of to describe it. She handed us a copy of Isaiah's most recent labs and with tears in her eyes told us that his IgE (Immunoglobulin E, the antibodies your body produces in response to something it views as a threat to your body) has increased. Again. It had increased by over 500 "points" and is now nearing 3,000 - his allergies have actually gotten worse. While it may not sound all that bad, she also said that given his age and the history of his labs, medically speaking, Isaiah will <b>never outgrow his allergies.</b> What little hope we had been given from the doctors has been taken away. His eosinophils (another way to measure your body's response to an allergen) were not included in the RAST testing (the blood test for allergies) this time, so we do not know where they are at this point . . . that test will come soon, though.</div><div><br /></div><div>She reminded us that Isaiah is on all the medications that he can possibly be on and that all we can do is increase the dosages. She also mentioned that with the insurance changes that have been occurring recently, many of Isaiah's meds may not be covered in the near future - we have already experienced some issues with this, but have found loopholes to keep things covered. </div><div>One med that has helped manage symptoms for Isaiah was Xyzal - it is only covered by one of our insurances . . . and it is only covered once a year. Isaiah needs to take it twice a day, every day.</div><div><br /></div><div>There were no talks about removing meds, just increasing some here and there because of symptoms Isaiah is exhibiting (one of them being covered in an itchy rash, again - most likely eczema). Oh, yeah, then we also switched one of the topicals to try and control the rashes on his body . . . the one that we can use on his face still works (it's steroid-free, so it's safer to use on his face). </div><div><br /></div><div>While I sort-of expected to hear that Isaiah's IgE levels had not decreased that much, I definitely was not expecting to hear that they had <i>increased.</i> Although, I had one of those eerie feelings in the pit of my stomach, I still hoped for a large decrease.</div><div><br /></div><div>I could go on and on about the things my son will not experience in this life without God's healing, but I really don't even want to think about it. It does make me think about what all of us, not in Isaiah's shoes, take for granted (what I used to take for granted before Isaiah). I could easily list them; I won't lie, the thoughts have wandered through my mind. But I just can't go there - it hurts and it serves no purpose except to make that pain worse.</div><div><br /></div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8Kh_ekpM-LUq4_s-0qYVRFGffEgNF3wkTbIVbKjhu_X7ahwFMMjjLECrLK5Ys1Qv7E4y0QCCyFnMT5hGOXjWSwStwoGqIEg96wjdwYC-2ETmT4BMAiMKzvEB1MrfUEIN5GiZA7EaEfH6E/s400/IMG_12962.jpg" style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 300px; height: 400px;" border="0" alt="" id="BLOGGER_PHOTO_ID_5632736888616952114" /><div>I <i>am</i> thankful that our hope doesn't exist in the doctors, their words, or knowledge, but in the hope we can only find in God. I am thankful for such an amazing little man who can still smile and isn't missing a thing in this life - bubble or no bubble. He is oblivious in many ways and, yet, seems to understand that he's different . . . he even prefers what makes him different. His rigidity for keeping things familiar is actually a blessing - he doesn't complain that he can't have that cake, cookie, puppy . . . by the way, he HATES dogs . . . well, pretty much any animal that moves and makes a noise. =0) </div><div><br /></div><div>Through his joy in his everyday life, you can see God's hand on him. Whatever God decides to do with Isaiah - heal him here or in heaven - one thing is for sure: God is amazing. Through Isaiah, God has touched so many people with his smile, giggles, and interesting perspectives. His quick wit and his charm always bring a smile to my face, not to mention laughter. He has a way of saying things that can make a rough day seem brighter and loves to make you laugh - though, sometimes, it's quite by accident. </div><div><br /></div><div>He makes me smile, brightens my day, reminds me to be thankful and mindful, makes me realize how grateful I should be, and encourages me to be brave . . . and trusting. Through all of Isaiah's trials, he remains the same child - bubbly and unaware that life can be different. Of course, he gets the grumpies . . . but his joyful times far outweigh those moments. Sleepy or no, Isaiah smiles . . . and has giggle fits. I forgot to mention that he is quite spontaneous and can be quite random. </div><div><br /></div><div>As I was writing this, he came running into the room, stripped, then streaked with his giggly self . . . in front of the open-curtain windows while our next door neighbor stood outside. In his defense, Ye-Ye had just sprayed him with a hose and so he was wet. =0) Ehem. Yes, I did stop writing to clothe my child, and no, he is not generally the kind to de-clothe himself. =0)</div><div><br /></div><div><span class="Apple-style-span">No matter what may lie ahead for Isaiah and for us as a family, I have hope that God holds all the answers, cures, and treatments - He sees the "big picture" even if I can't. He knows the beginning, middle, and ending of our journey. He will carry us through all of this and provide what we need and I trust Him . . . even if the places He brings us through are uncomfortable and painful. I know that God is working in it all and He has a purpose - "in all things God works for the good of those who love Him, who have been called according to His purpose</span><span class="Apple-style-span">" (Romans 8:28) - and that He has a plan - "for I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you a hope and a future" (Jeremiah 29:11). There is a reason and a purpose, even though the journey may be painful, difficult, or frustrating - God never guaranteed us a painless and easy-peasy life here on earth, He guaranteed He wouldn't leave us alone in our pain. </span></div><div><span class="Apple-style-span"><br /></span></div><div>There is a song that has been playing on the radio almost every time I get in the car. That song actually began to speak to me. I can't help but tear up when I hear it because sometimes God's answer to us is not a quick healing right in front of our eyes, but something that takes a little longer . . . or a lot longer . . . sometimes, it's something we don't even see. Just because things aren't quite <i>what </i>we want them to be <i>when</i> we want them to be doesn't mean that we're praying incorrectly or lacking in faith. It doesn't mean that we're doing something wrong. I can't begin to answer any questions as to why other than God is God and He knows the reason/reasons. He brings blessings to us even in our pain.</div><div><br /></div><div>I'll just let the song speak for itself . . . in fact, it may even be playing while you're visiting my blog (it's a song called "Blessings" by Laura Story, in case you're wondering):</div><div><br /></div><div>"What if your blessings come through raindrops, </div><div>what if Your healing comes through tears,</div><div>and what if a thousand sleepless nights are what it takes to know You're near?</div><div>What if my greatest disappointments</div><div>or the aching of this life</div><div>is the revealing of a greater thirst this world can't satisfy?</div><div>And what if trials of this life</div><div>are Your mercies in disguise."</div><div><br /></div><div>Yes, I do believe and will say it with a smile on my face: everyone needs an Isaiah in their life to show you God's greatness. Who is your Isaiah?</div>Anonymoushttp://www.blogger.com/profile/05794861969385963968noreply@blogger.com0tag:blogger.com,1999:blog-4414222857937475053.post-7982110744353606372011-07-19T20:47:00.008-04:002011-07-19T21:49:06.859-04:00I Heart Faces Photo Challenge: Props<div style="text-align: center;"></div><div style="text-align: center;"><span class="Apple-style-span"><u><br /></u></span></div><div><div><div><div><img style="margin: 0px auto 10px; width: 160px; height: 160px; text-align: center; display: block; cursor: pointer;" id="BLOGGER_PHOTO_ID_5631234817218553874" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNdKy-H-zgL7oetY7BbYnTiLE4WufcdLFHeqPaf2i8CMj5D3QqcIumZQhoRI8Fdh-UA2cuk14ATIaoHJjTJoL3rb3REvNsen7FGGlw5PXuJsW9avp_ZmD7-0CS2urbhsHb85Ho0n_ZGKbA/s320/I-Heart-Faces-button.jpg" /><br /><div><div>I haven't entered a photo in a little bit, but couldn't help it when I saw this week's challenge . . . Isaiah is just so photogenic! =0) Anyway, the prop??? The hat. He LOVES this hat. He wears it almost everywhere, almost everyday. The poor hat started out as part of an Easter outfit . . . it has now become a staple for just about every outfit. =0)</div><div> </div><div><br />So, what hat am I talking about???</div><div><div style="text-align: center;"><br /></div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWtDIkEKK2KOhGsgiNSzBkzsPaIwlIYDAO3PoQ07DkEjfwtyBUvxpXq4_z1dmoGGTpfDQ4pbkTwdJw4Z3Jsl8MW0h70AFSIJLN_PdpvzstDsUlQQIjSuKQDgL97yC9ceM1q6ndAIOD9Nw2/s400/IMG_04172.jpg" style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" border="0" alt="" id="BLOGGER_PHOTO_ID_5631244723525059026" /><br />=0) I just love his expression in this photo - he was goofing around, as usual. He is always so bubbly . . . and he is soooo difficult to photograph. In fact, I almost didn't get this picture. He was making all sorts of noises and bouncing around . . . then, he turned around with this look on his face - I'm so glad I had already pushed the button. =0)</div></div></div></div></div></div>Anonymoushttp://www.blogger.com/profile/05794861969385963968noreply@blogger.com4tag:blogger.com,1999:blog-4414222857937475053.post-63336172304598143112011-06-25T18:23:00.002-04:002011-06-25T18:38:25.240-04:00Six years ago today . . . Part IV<div style="text-align: left;">June 25th, 2005 was a day I will never forget. It was the day God blessed me with a wonderful gift - one for which I cannot thank Him enough.</div><div><br /></div><div>The morning started out with a nurse coming in at 8:30 with pitocin. She hooked me up and said, "now, you're officially in labor." I was so excited and, I have to admit, quite nervous. I remember getting to watch a TV show I used to love when I was little - <i>The M</i><i>onkees</i>. I remember trying to watch the show and make sense of the silliness, but was too excited about the thought that by the end of the day, I will be a mommy!</div><div style="text-align: center;"><br /></div><div>My mind kept flashing back to when I found out I was pregnant. I remember being at work and getting the phone call from the nurse - all I could say was, "are you serious?!? Oh, my gosh! Oh, my gosh!!!" I scared my friends who were there because I couldn't talk - and I wanted my husband to know before I said a word to anyone else. </div><div><br /></div><div>I remembered telling my husband . . . I remember telling my mom and crying because I was so scared and I remembered how close I felt to her that day. I remembered not being a very efficient employee the rest of the day. =0) I also remembered telling just about everyone I came into contact with. I was so very excited - just like I was this day. God was blessing me with someone I had wanted so much, someone He promised I would meet one day.</div><div style="text-align: center;"><br /></div><div>After the pitocin was started, the day seemed to fly by. Every so often, the nurse would come in and increase the pitocin to try and bring me into "active labor." Finally, by about 2 pm (I lost all track of time at some point), active labor began. The nurse had just come in to increase the dosage, and within seconds of that increase I felt like I wanted to run a marathon just to get away from the pain! =0) </div><div style="text-align: center;"><br /></div><div>The nurse, knowing I was trying to keep things natural - no meds - was trying to have pity on me and kept sneaking in to take me on walks in the bathroom (I wasn't supposed to be off bed rest or off my left side yet). Some moms say that they forget the pain . . . I still remember. =0) </div><div><br /></div><div>Anyway, I remember thinking that I just couldn't keep going through the pain and I REALLY wanted those drugs! The nurse kept reminding me that it was alright and to just keep breathing. Everything I learned in the birthing classes disappeared and I felt like I was going blindly into labor. Between no sleep the night before and the contractions I was having every two minutes, I was exhausted and began to fall asleep in between contractions.</div><div><br /></div><div>Then, around 3:30, the doctor said that it was time to meet my baby boy. Three hours later, I met him. At 6:23 pm (about 10 hours after I received the first doses of pitocin), Isaiah Christopher was born at a healthy 10 lbs. 3 oz. and 23 1/2 inches long (my 2-month old newborn). =0)</div><div><br /></div><div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjo_Zb2XuYFLldyHuG-yJBxAtiFH7HDcwnehtB5O4C4BsEjc33PVzJDXdTqgTfUAJN41J3Z5CBo2sPlbGXUWnA4qL4RqKTkDVhq_aF3TK3glJmr8TarYPwK7q8Bsku8xVzEWI-dEYmq3RBd/s320/24747_419909251912_541076912_5022129_3306515_n.jpg" style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" border="0" alt="" id="BLOGGER_PHOTO_ID_5621952663674673474" /><div style="text-align: center;"><br /></div></div><div>His little cry was the most beautiful sound I had ever heard and even though I had planned on waiting to give him his very first kiss (you know, until after he had his first bath), I couldn't help but kiss his beautiful forehead. I was in love - even more than I had been while I was pregnant. There was the baby I had wanted so very much - the baby I had prayed to meet since the day I found out I may not have children. He was perfect. All the pain and the waiting were worth it. </div><div><br /></div><div style="text-align: center;"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKCnnfmjCay2qluEtBLbF0jaOAhV1bdceZM6Z8LQ6B3ly3fc_4TJd_3HQMNxx1KxjptRLuosIFxHI3VcRHV-W09E6WXulAyjR7A24-FTsRUCsrrxVT_EChAN9kwn8yKvNU1lhBe59fzC-N/s320/24747_419911666912_541076912_5022201_8242439_n.jpg" style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 290px;" border="0" alt="" id="BLOGGER_PHOTO_ID_5621952670731509730" /></div><div><br /></div><div>God's timing was perfect. His promise and gift were perfect. </div><div><br /></div><div>Six years later, I am still in amazement at all God has done through my little guy. He has brought us through some really rough times and I know that He will continue to do so. Even in the midst of Isaiah's health issues and the frustration (and joy) of Autism, God is doing amazing things through Isaiah. Isaiah is still the fulfillment of God's perfect promise and gift. </div><div><br /></div><div>Isaiah, I am so proud and thankful to be your mommy. You are truly an amazing little guy - you're my hero. You have helped me learn things that I don't think I would have learned without you - you helped me learn to be strong, to be more reliant on God, and how to pray continually. While life may be difficult for you at times, you continue to smile and laugh. I just love that about you. I also love how witty you can be and your goofy sense of humor. You are my sunshine on days when I need a smile (I can always count on you for a good smile and laugh) and you give the best hugs of anyone I know. Your amazing memory still astounds me as does your bravery. =0) </div><div><br /></div><div>Happy 6th birthday, baby boy, with many more to come! I love you, Schtinker!</div>Anonymoushttp://www.blogger.com/profile/05794861969385963968noreply@blogger.com1tag:blogger.com,1999:blog-4414222857937475053.post-89280444495413545312011-06-24T18:23:00.006-04:002011-06-24T19:56:26.591-04:00Six years ago today . . . Part III<div>Six years ago today, I had my scheduled appointment. This time, I didn't even consider being induced. I didn't even want to think that today was the day I would go into the hospital to meet my baby boy - I didn't want to be disappointed yet again. I went into the appointment with no anticipation, just plodding in there to hear my baby's heartbeat and to make another appointment. </div><br />The appointment was long. The doctor checked everything, left the room (he even darkened the room so I could nap a bit . . . laying there on my left side), then came back to check on me again. Instead of saying, "okay, see you in a few days," he said, lets get you checked out at the hospital." WHAT?!? Calming myself, he told me to go have a good lunch, then drive over to the hospital to be checked out. He didn't want to make any promises, but he also wanted to make sure I had eaten just in case I was there a while. So, I drove to Subway and ate what I could (I might have been hungry, but there was nowhere for food to go), then drove to the hospital. Yes, I was driving and I wasn't supposed to be . . . long story that doesn't need to be shared on the blog. =0)<br /><br /><div>When I got there, I was met by another doctor from the same practice. He looked at me and said, "you look uncomfortable!" Yeah, no kidding. My clothes barely fit (the full belly panel on my shorts was showing) and I couldn't breathe. Having compassion on me, he found a chair for me and asked, "do you have your bags with you? I can't bear to send you home - I'll see what I can do to have you admitted." Finally! A doctor with some compassion!!! =0) A trip to the car with a smiling nurse and a few hours later, I was given a room in labor and delivery. No, I wasn't in labor, but Isaiah had absolutely <em>no</em> room left in there and it was taking a toll on my health. </div><br /><div>Six years ago, today, I was waiting in L&D. Waiting with hope and belief that my little baby boy was going to make an appearance the next morning. I was hooked up to all the monitors and given a few meds to prepare me for the long day ahead. Again, I was told to stay on my left side . . . they weren't kidding - they made sure I stayed on my left side <strong><em>and</em></strong> off my feet. I made a few phone calls and watched TV. </div><div><br /></div><div>This time, I just knew I would meet my baby boy - a child I had prayed so much to have. I was excited, and slightly scared, but confident I could handle labor . . . ehem. =0) Prayer continued as I waited. There would be no dinner tonight - dinner is not given in this part of the hospital . . . but my hidden snacks worked just fine. =0) </div><br /><div>I remember the room so well. It was made to feel like home. Beautiful wooden cabinets that hid all the evidence of being in a hospital with pretty pictures on the walls. The only evidence of the room being in a hospital were the floors and the bed. There was also the cart at the foot of my bed - the cart with all the things needed for the birth of my child, neatly covered . . . but they were there. There was also a bassinet waiting for <em>my</em> baby. This wasn't imaginary and it wasn't on TV - this was it. It also didn't feel like the last two times I was in the hospital - the doctor was determined to help Isaiah into the world. I was <em>not</em> leaving without my baby in my arms this time - even if a c-section was needed. </div><br />There wasn't much that happened that night - it was a lot of waiting. The birthday song would play for babies who were born that night over the speakers. I knew other mommies were meeting their little ones. This time, I wasn't frustrated - mine would be here soon.<br /><br /><div>I was as prepared as I could be. I had everything planned out for the next day (chuckle, chuckle). No more <em>What to Expect When You're Expecting</em>, it was time for the <em>real</em> baby books, you know, <i>What to Expect the First Year. </i>=0)</div><div><br /></div><div>I slept little, if any that night. The bed made my poor left hip hurt along with my back (lovely delivery tables), but the excitement of what was to happen very soon kept me awake - even Lunesta wasn't helping. =0) All night, I listened to the sound of my baby's heartbeat and movement. I became thankful for this moment - a moment I knew God had prepared me <em>for</em> and prepared <em>for </em>me. It was perfect timing - <em>His </em>timing. There's no way of explaining why, it just was. I was happy and at peace . . . six years ago, today. =0)<br /></div>Anonymoushttp://www.blogger.com/profile/05794861969385963968noreply@blogger.com0