tag:blogger.com,1999:blog-83206632121304102692024-03-05T13:40:10.534-05:00Gavin's Story! Living with Juvenile Arthritis...Unknownnoreply@blogger.comBlogger21125tag:blogger.com,1999:blog-8320663212130410269.post-21305872150848760622011-03-28T20:50:00.000-04:002011-03-28T20:50:22.793-04:00Gavin's Story! Living With Juvenile Arthritis, Uveitis & Ulcerative Coli...<iframe height="344" src="http://www.youtube.com/embed/VdTsWXNg7Bg?fs=1" frameborder="0" width="425" allowfullscreen=""></iframe>Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-8320663212130410269.post-856970156592001732011-03-27T19:34:00.005-04:002011-03-27T20:48:06.984-04:00Surgery cancellation #4<strong>Well, as most of you know...Gavin had his pre-op on Friday the 25th. They tested his eye pressure and his left eye tested at 54! This is way too high! The normal range for eye pressure is 10-20. So, this means that his eye is not well enough for cataract surgery :( This also means we need to worry about Glaucoma. UGH...just what he needs. His eye drops have changed...they added some and stopped some. His oral meds will most likely change...just waiting on his rheumy to decide what to do there. My guess is that she will want us to back off on his steroids. He is on the steroids for his JA (Juvenile Arthritis) and UC (Ulcerative Colitis) but there are always side effects and cataracts and glaucoma are some of those side effects.</strong> <strong></strong><strong>He is still getting an EUA (Exam Under Anesthesia) on the 4th and she has asked a Glaucoma Specialist to do the exam with her so he can help prevent Gavin's eyes from getting any worse. </strong><strong></strong><strong>Don't know when the cataract surgery will be but she has asked a Retina Specialist to assist her with the surgery because of the way it needs to be done.</strong> <strong>I will keep you updated on how his EUA goes and what his rheumy decides on what to do with his meds.</strong> <strong>Thank you all for the prayers and kind words!</strong> <strong>xxooxxoo</strong>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8320663212130410269.post-35595020380942284462011-03-17T22:57:00.005-04:002011-03-18T00:08:15.114-04:00.......<strong>I am having a rough night tonight. I don't know why but this just happens sometimes. Gavin has been doing great but yet I sit here crying...thinking about the future. Praying that Gavin will be healed so he can live a healthy and very long life. Hating that my sweet boy has these diseases. But knowing that he is a very strong boy and will keep fighting. </strong><br /><strong></strong><br /><strong>The next month is going to be busy for us. Gavin has his <em>Remicade, Solu-medrole & IVIG </em>infusions on Thrusday (that is the same day as his class picture so thinking about changing his infusion to the day before. He is a BIG part of his class and I don't want him to be missing from the picture). He will also start his first round of antibiotics to prep him for his cataract surgery. Friday is his pre-op appointment for his cataract surgery. April 2nd we are having his 6th birthday party :) April 4th is his surgery date then post-op the next day. April 7th is his actual birthday. The same day he is scheduled for his <em>Actemra & Solu-medrole </em>infusions. Then the following week is another eye appointment to follow up with his surgery. The week after that is another infusion <em>Remicade, Solu-medrole & IVIG. </em>And so on with the infusions like normal. On the 25th of April we are finally meeting with the Nephrologist...then we will find out what they are seeing on his kidney from the ultrasound...I am so nervous about this!</strong><br /><strong></strong><br /><strong>I guess all of this is starting to hit me and reality of his surgery is becoming just that...a reality! Although I am so excited about finally getting this done...I am just as scared. Gavin has been under anesthesia more times then I can remember but it never gets any easier. Signing that paper everytime before his procedures gives me such anxiety. UGH! </strong><br /><strong></strong><br /><strong>So, please keep Gavin in your prayers for a successful surgery and quick recovery! And please pray that he stays healthy enough before, during and after. We will keep you updated on how he is doing.</strong><br /><strong></strong><br /><strong>Thank you all</strong><br /><strong>XXOOXXOO</strong><br /><strong>Julie</strong>Unknownnoreply@blogger.com7tag:blogger.com,1999:blog-8320663212130410269.post-25606549925581442452011-02-23T14:46:00.003-05:002011-02-23T15:21:48.461-05:00Infusion Day<strong>Well, it is now 2:50pm and we have been in the infusion room since 8am. Gavin has been such a good boy...mainly because he has slept most of the time. He was up very late last night. </strong><br /><strong></strong><br /><strong>Todays infusion is Remicade, IVIG & Solumedrol. His Dr came in and examined him and is happy with his joints (no flares...YAY). So, she lowered his oral steroids again (another YAY). She is going to mail all of his medical papers from his eye Dr in Miami to the new one here so she can "study" Gavin's history.</strong><br /><strong></strong><br /><strong>Gavin had to get stuck twice today for his IV :( The problem with him is that when they put it in the bend of his elbow the machine goes off every 10 minuites because he won't keep him arm straight. Today they did it in he wrist and it blew :( so they had to do the underneath of his forearm....it looks so painful but he didn't cry once :)</strong><br /><strong></strong><br /><strong>He was so happy to see that Jake and Hannah were here getting their infusions when he woke up. Hannah let Gavin play with her iPod Touch and now he is addicted...lol...he loved it. </strong><br /><strong></strong><br /><strong>Anyways, it has been a great visit at the Dr's today. Now we are going to try and get this splinter out of his finger.</strong><br /><strong></strong><br /><strong>Thanks for the prayers and love! It's working :)</strong><br /><strong></strong><br /><strong>xxooxxoo</strong>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8320663212130410269.post-51256195223637927072011-02-22T14:58:00.003-05:002011-02-22T15:26:47.039-05:002 days of Dr visits...Today Gavin had his first appointment with his new eye <span id="SPELLING_ERROR_0" class="blsp-spelling-corrected">Dr</span> in <span id="SPELLING_ERROR_1" class="blsp-spelling-error">Gainesville</span>. He/We likes her a lot. She was very nice, <span id="SPELLING_ERROR_2" class="blsp-spelling-corrected">compassionate</span> and understanding about Gavin's medical issues. She is also understanding of our feelings and reservations because of the past issues we have had with other <span id="SPELLING_ERROR_3" class="blsp-spelling-corrected">Dr's</span>.<br /><br />Anyways, Gavin was very good for her and she didn't see any cells in his eyes!!!! This means that his eyes are clear....NO <span id="SPELLING_ERROR_4" class="blsp-spelling-corrected">INFLAMMATION</span>!!!!!! This is awesome news! So, we scheduled him for his cataract surgery/<span id="SPELLING_ERROR_5" class="blsp-spelling-error">EUA</span>!! We are very excited and nervous about this. One thing we made sure was that she would not (under no circumstances) do the surgery if she saw any cells in his eye! She agreed and hopefully she is the <span id="SPELLING_ERROR_6" class="blsp-spelling-corrected">Dr</span>...the one...that is <span id="SPELLING_ERROR_7" class="blsp-spelling-corrected">meant</span> to do this surgery on Gavin. The surgery is scheduled for 4/4/11. Please keep him in your prayers that everything goes perfectly!!! <span id="SPELLING_ERROR_8" class="blsp-spelling-error">xxoo</span><br /><br />After his appointment we took Gavin to Toys R Us and he picked out a couple toys for being such a good boy at the <span id="SPELLING_ERROR_9" class="blsp-spelling-corrected">Dr's</span>.<br /><br />Right now we are resting in a hotel room. Tyler went back home to take care of the other two boys. Gavin and I are planning on seeing a movie tonight "<span id="SPELLING_ERROR_10" class="blsp-spelling-error">Gnomeo</span> & Juliet" and go out to dinner. Then we have to get lots of sleep for his big infusion day for tomorrow.<br /><br />Days like tomorrow I dread. It's going to be a long one...<span id="SPELLING_ERROR_11" class="blsp-spelling-error">Remicade</span>, <span id="SPELLING_ERROR_12" class="blsp-spelling-error">IVIG</span> & <span id="SPELLING_ERROR_13" class="blsp-spelling-error">Solumedrol</span> :( I hate putting all of these <span id="SPELLING_ERROR_14" class="blsp-spelling-error">meds</span> in his body but I understand that (as of right now) it is the only way. <span id="SPELLING_ERROR_15" class="blsp-spelling-corrected">At least</span> we will get to see our friends in the infusion room tomorrow. Gavin is going to be so happy when he sees Jake in the infusion room :) I haven't told him that he will be there yet... ;)<br /><br />I will update you all tomorrow to let you know what his rheumy says and how his infusion goes :)<br /><br />Thanks for all of the prayers and kind words :)<br /><br /><span id="SPELLING_ERROR_16" class="blsp-spelling-error">xxoo</span>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8320663212130410269.post-24440757482334442072011-02-10T17:04:00.003-05:002011-02-10T17:58:03.113-05:00So Far...So GoodGavin had his Actemra and Solu infusion yesterday for his <em>Juvenile Arthritis</em> and <em>Uveitis</em>. The day started off great :) We ran into some great JA friends<strong>, </strong>the Sloan's, when we got to the hospital. Being with friends and family always make infusions a lot easier.<br /><br />Gavin's rheumatologist is very happy with the way he is improving. He has gained more weight and has almost gained the 10lbs back that he lost last month because of the <em>ulcerative colitis. </em>She lowered his prednisolone again down to 6 ml's. His steroid puffiness is starting to go away and his familiar features are starting to come back. The infusion went well and as expected. He watched two movies and before we knew it...he was done. It was a short one for him.<br /><br />We go back in two weeks for his remicade, solu and IVIG infusion. This is the long infusion...it takes about 8 hours just for the infusion. But, the Sloan family will be there again so that will make it a little easier :)<br /><br />Gavin's <em>ulcerative colitis </em>has improved a lot! Being back on the remicade has done the trick for him. He is so much happier and full of energy these days. He has an appointment with his GI doctor in two weeks. I am hoping they will lower the doses of some other meds.<br /><br />We are meeting with a new eye dr for him next month. Gavin's <em>uveitis</em> has been under control...as far as we can tell. At home his vision has seemed to improve. He doesn't have to get as close to things to see them like he used to. This is a good sign...but, he still needs to have his second cataract surgery and hopefully this new dr will be the dr that we have been praying for.<br /><br />So, all in all, February is off to a great start for Gavin and I hope that he continues to keep improving everyday.<br /><br />Thank you to everyone who has kept him in your prayers and thoughts. And thank you to our family and friends for everything! Having a child with a medical condition doesn't just effect the immediate family. It effects the WHOLE family and our friends as well. So, to all of you that go out of <strong><em>your</em></strong> way to help Gavin and us out...weather it's watching the other boys or something as simple as a phone call or card...it means a lot to us and Gavin loves the love :)<br /><br />XXOO<br />The Smith'sUnknownnoreply@blogger.com3tag:blogger.com,1999:blog-8320663212130410269.post-12545091235518327162011-01-21T17:39:00.004-05:002011-01-23T09:14:47.459-05:00Just little update...<strong>Gavin has had a great week! He went to school and did awesome! He was nervous about going back to school because he had missed almost a whole month (Christmas vacation and being in the hospital). He was also worried about having an accident :( Because of the <span id="SPELLING_ERROR_0" class="blsp-spelling-error">ulcerative</span> colitis he has to go to the bathroom right away! </strong><br /><strong></strong><br /><strong>He got another ultrasound done on Friday of his Ureter, kidney & bladder. Hopefully they come back with better results this time. He cried the whole time he was getting his ultrasound done. He was scared that it was going to hurt him. I kept telling him that he will be fine and I will be there with him the whole time. When we left and got in the car he said, "You were right mom, that didn't hurt at all." So I asked he why he was crying if it didn't hurt? He said, "Well, it hurt a little." <span id="SPELLING_ERROR_1" class="blsp-spelling-error">Hahaha</span>...he is such a trip!</strong><br /><strong></strong><br /><strong>Last night we took the boys to the local Motocross. The kids loved it...especially Gavin. He wants to do it and he is old enough now but we don't think it would be a good idea for him. We don't want to hold him back from what he wants to do. We don't want his Arthritis top run his life, but we don't want him to get hurt (because it takes longer or him to recover) and riding motocross is hard on the joints...........UGH, decisions! We will see how he does on the little motorcycle that have.</strong><br /><strong></strong><br /><strong>After that we went out to dinner. Sitting behind us were 3 college girls. Brigham (our 2 yr old) was a trip and kept flirting with them. When Gavin introduced himself to them he told them that he was in the hospital. I have never heard him tell anyone this before. I was very interested to hear their conversation and his version on why he was in the hospital. When the girls asked him why...all he said was that he had to get some shots and it hurt :( </strong><br /><strong></strong><br /><strong>Monday is Gavin's follow up with his G.I. doctor where we will hopefully have the results from his ultrasound and then we go to the infusion room for his infusions...<span id="SPELLING_ERROR_2" class="blsp-spelling-error">remicade</span>, <span id="SPELLING_ERROR_3" class="blsp-spelling-error">solumedrol</span> & <span id="SPELLING_ERROR_4" class="blsp-spelling-error">IVIG</span>. It will be a long day.</strong><br /><strong></strong><br /><strong>Thanks again for all of the prayers and thoughts! They are working!!! He is doing great and recovering much quicker then we were told he would.</strong><br /><strong></strong><br /><strong><span id="SPELLING_ERROR_5" class="blsp-spelling-error">xxooxxoo</span></strong>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8320663212130410269.post-3255542301719939572011-01-14T22:03:00.000-05:002011-01-14T22:16:45.876-05:00Juvenile Arthritis...it's no joke people!!!!<strong>The following is a link to a story about a young lady who lost her battle with Juvenile Arthritis at the age of 26. It is told by her father. I wish all of the "skeptics" could read this! I am so sick of people thinking and saying, "Well, he doesn't look like he has arthritis." or "Isn't arthritis just sore joints?" My heart goes out to this family. <br /><br />http://2011aworlando.kintera.org/faf/home/ccp.asp?ievent=424535&lis=1&kntae424535=688661AD8D1A46C3B244147F5B749B23&ccp=109188</strong>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8320663212130410269.post-3692211950442491082011-01-14T09:15:00.000-05:002011-01-14T10:35:31.937-05:00Too many medications for such a little guy :(This is just to show you what my little Angel takes and had to take for his arthritis, uveitis and ulcerative colitis. The <strong>bold</strong> print medications are the ones he is currently taking...<br /><br />*<strong><em>From Day 1 (oral, injection & infusion)...</em></strong><br />Naproxen (January 2007~January 2011) stopped<br /><strong>Prednisolone (January 2007~present)</strong><br />Tylenol with Codeine (January 2007~January 2009) as needed<br /><strong>Methotrexate~injection (July 2007~present)</strong><br />Enbrel~injection (2007) failed<br />Humeria~injection (2008) failed<br />Remicade~infusion (2008) stopped<br />Solumedrol~infusion (2008) stopped<br />Zantac (April 2009~January 2011) stopped<br />Humeria (April 2009) failed again<br /><strong>Remicade~infusion (June 2009~present)</strong><br /><strong>Solumedrol~infusion (April 2009~present)</strong><br />Rituxan~infusion (November 2009~November 2010)<br /><strong>IVIG~infusion (May 2010~present)</strong><br /><strong>Iron (2010~present)</strong><br /><strong>Vit D3 (2010~present)</strong><br /><strong>Calcium Carbonate (2010-present)</strong><br /><strong>Multi-Vitamin (birth~present)</strong><br /><strong>Tocilizumab~infusion (December 2010~present)</strong><br /><strong>Prilosec (January 2011~present)</strong><br /><strong>Sulfasalazine (January 2011~present)</strong><br /><br />*<strong><em>Eye drops for Uveitis...</em></strong><br />Presnosolone (2007~2010) on and off<br />Timolol (2007~2010) on and off<br /><strong>Atropine (2007~present) </strong><br /><strong>Durezol (2010~poresent)</strong><br /><strong>Dorzolamide HCI-Timolol (2010~present)</strong><br /><br />*We also give him liquid <strong><em>Fish Oil </em></strong>and powder form<strong> <em>Acidopholis</em></strong>.<br /><br />*Then there are the numerous antibiotics he has been on (because being on double immune suppresents means he gets sick a lot) and because of that he has become immune to a few of them already :(<br /><br />We hate that our little Angel has to be on all of these meds but pray that they will continue to help him feel less pain and suffering that comes along with Juvenile Arthritis, Uveitis and Ulcerative Colitis.<br /><br /><br /><strong> </strong>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8320663212130410269.post-44749331703251449772011-01-13T08:53:00.000-05:002011-01-13T11:19:09.131-05:00Gavin's new diagnosis<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnSSkrGoLzwoN9SKy7M8fWx9PAFPkdiQeR0WEX4a3Gr8bBMivBJ9-8MYy791HxQjTOml1ErreTv8D7G99AHT6beAWJRf9oxAEV266cD_xgzNaxAeIYjUwHMxmM0PjKSE-hKeQL6hOnAI_u/s1600/166587_10150356546115725_615210724_16876219_3600064_n.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 200px; DISPLAY: block; HEIGHT: 150px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5561704506310730066" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnSSkrGoLzwoN9SKy7M8fWx9PAFPkdiQeR0WEX4a3Gr8bBMivBJ9-8MYy791HxQjTOml1ErreTv8D7G99AHT6beAWJRf9oxAEV266cD_xgzNaxAeIYjUwHMxmM0PjKSE-hKeQL6hOnAI_u/s200/166587_10150356546115725_615210724_16876219_3600064_n.jpg" /></a><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCqSE_e4mlih9RdSW1b9LYW20HwPgNVLE2gQU9im-mmLTJkobRSsdFVccRTi8nEfnKbpP4JYEwAGptzRrN8HIEsZVMo1vd4KR6ICF8j6sL6Q-ujYDUtKodlASJrxbz6qfMT6wkd76C4G3P/s1600/165512_10150351935920725_615210724_16787918_170401_n.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 150px; DISPLAY: block; HEIGHT: 200px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5561704506130165186" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCqSE_e4mlih9RdSW1b9LYW20HwPgNVLE2gQU9im-mmLTJkobRSsdFVccRTi8nEfnKbpP4JYEwAGptzRrN8HIEsZVMo1vd4KR6ICF8j6sL6Q-ujYDUtKodlASJrxbz6qfMT6wkd76C4G3P/s200/165512_10150351935920725_615210724_16787918_170401_n.jpg" /></a><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOBmEbdMUZAJUBndajSPPo7b_Vph8QRaCRlTDNtowEfT-UnvQEqGQGdVG4lHUOTOP29UG_sDRUZiryldx_Zoz06c3TLn2aM06kLC32M1vFKWtzBL08PHT0x1lldqzH0e_vKnGGwXoRApV3/s1600/163253_10150351322725725_615210724_16776133_7252338_n.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 150px; DISPLAY: block; HEIGHT: 200px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5561704503884026610" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOBmEbdMUZAJUBndajSPPo7b_Vph8QRaCRlTDNtowEfT-UnvQEqGQGdVG4lHUOTOP29UG_sDRUZiryldx_Zoz06c3TLn2aM06kLC32M1vFKWtzBL08PHT0x1lldqzH0e_vKnGGwXoRApV3/s200/163253_10150351322725725_615210724_16776133_7252338_n.jpg" /></a><br /><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisyPWBbyzwwE93lSdXYDj8_2O5VMzNCaOpWXm1vRzrE462xlCLH47NH2FKX0UiopASKsLbfZkBfm5VFveitcxGDd6ifI4K_Pd66rTL989pGn5ekjnDleiYLuPaxgrz-VE1G7MMDjX3CtLa/s1600/Shands+Jan2011+2.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 150px; DISPLAY: block; HEIGHT: 200px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5561704498159253714" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisyPWBbyzwwE93lSdXYDj8_2O5VMzNCaOpWXm1vRzrE462xlCLH47NH2FKX0UiopASKsLbfZkBfm5VFveitcxGDd6ifI4K_Pd66rTL989pGn5ekjnDleiYLuPaxgrz-VE1G7MMDjX3CtLa/s200/Shands+Jan2011+2.jpg" /></a><br /><br /><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9T3u_g2g8QE6h3Sl5mrkPYI-2lUe-e-fpaelXchQlr5VIKOlB8hZsCMrx13qrfSoQZJUisA2fp96nVhvTS0Ci1ETS00yeFWX9HipJHpZrmXvY1FwUzZp6p06mbZJNSYIElOthAhAWLCHJ/s1600/gavin+1+4+11.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 150px; DISPLAY: block; HEIGHT: 200px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5561704501775009506" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9T3u_g2g8QE6h3Sl5mrkPYI-2lUe-e-fpaelXchQlr5VIKOlB8hZsCMrx13qrfSoQZJUisA2fp96nVhvTS0Ci1ETS00yeFWX9HipJHpZrmXvY1FwUzZp6p06mbZJNSYIElOthAhAWLCHJ/s200/gavin+1+4+11.jpg" /></a><br /><br /><br /><br /><br /><br /><div><br /><br /><br /><br /><br /><br /><br /><div>Sorry I didn't<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiq1stC0b5wfoQ_M27IJMLEe5Dh7LMkdPT5SV3Y_tIilbmmd4iS0zjlG7UhsBlEbo9qSMKx9cPZhyJStV17ll0RjVZ7PekEuunc4XV4i9rye0NQb5FsP1nkvd8qAMH0MIXIALNYRvgImka/s1600/gavin+1+4+11.jpg"></a> update the blog when we were in the hospital with Gavin. The connection there wasn't the best and we were very busy. I will give you a brief summery of what happened.</div><br /><br /><div>Day 1. Tuesday~ Gavin was admitted to Shands Hospital January 4, 2011. As were waited for his room he got a solumedrol infusion at his rheumatologist office because he was not walking. Once admitted and we met will ALL the dr's he had a feeding tube put in to prep him for his endoscope and colonoscopy....it was a looooong and rough night!!!! And he hated the feeding tube! But he cheered up a little bit when he got a surprise gift from my friend Stephanie...a bag of fun stuff and a balloon :)</div><br /><div>Day 2. Wednesday~ Tyler came up and then we had to switch rooms. Once settled in the new room Gavin was transported to the OR for his procedure. It was very quick and the results were not good. They saw tiny ulcers in his belly and his colon was covered in ulcers and it was swollen and bloody :( They said that they were not able to see the whole colon because they didn't want to irritate it anymore so he would have to have a CT Scan on Friday (day 4). Gavin knee was also so inflamed. He was miserable so they gave him another solumedrol infusion. He also got a surprise present from my friend Amber...a stuffed dog and balloons :) Gavin also got an IVIG infusion because his protein was low.</div><br /><div>Day 3. Thursday~ Today was a chill day. My parents came up with our younger boys and we all just hung out and relaxed. We also had some other visitors...the Lentini family and the Googin family stopped by to say hi and hang out with us (they are part of our JA family). I want to thank the Googin family for bringing Gavin and I breakfast...you guys rock :) It was a day filled with love, friends and family!</div><br /><div>Day 4. Friday~We started the day prepping for Gavin's CT scan. They had to put a feeding tube in him again. This time I asked for him to have the zofran before they put it in and something to relax him. The last time was an awful experience for him!!! Gavin did much better this time but had a bad reaction to the Adivan. He was such an emotional mess and pretty much cried for 8 hrs straight. It didn't help that they gave him another dose before his CT scan. We felt so bad for him. He had NO control over his emotions at all. The scan results came back as expected and he was diagnosed with Ulcerative Colitis ... not something we wanted to hear but glad to have an answer. Later that day we had another visitor...the Wiliams family (another JA family) and they brought Gavin a doggie pillow pet :) Thank you. The rest of the day we waited and waited for the Adivan to wear off but it didn't....he had to sleep it off. He also got a remicade infusion along with methotrexate to treat his Ulcerative Colitis.</div><div> </div><div>Day 5. Saturday~ Gavin's Dr's came in and went over what his treatment plan would be but also informed us that it could change at anytime because it's not 100% that it will work. So, he was put on daily solumedrol infusions (at a low dose) along with oral sulfasalazine 3x's a day and Prilosec 2x's a day...along with his other meds and infusions to treat his JA and Uveitis. </div><br /><div>Gavin got a hall pass and we were cleared to leave the hospital for a few hours. We took Gavin to the park with his brothers. My parents and Tyler's parents joined us as well. It was good for him to get some fresh air and he had a great time but got tired quickly so we went back so he could lay down. Everyone went back home and Gavin fell asleep. My friend Amber came up and stayed the night with Gavin and I in the hospital. It was nice to have her there and it was a good change for Gavin.</div><div> </div><div>Day 6. Sunday~ Gavin got his infusion and Tyler came back up as well as my sister with her husband and two kids. We got another hall pass and all went to the Butterfly Gardens. The kids had a great time and Gavin loved the museum because it had Mammoth skeletons there. It was a nice day and it was good to see Gavin's smile coming back :) </div><br /><div>Day 7. Monday~ Gavin's Dr's came in and discussed his treatment with us again. He got some blood drawn and they said his protein was low again so he got scheduled for another IVIG infusion along with his solumedrol. We spend a lot of time in the playroom and took him out to a pet store to look at animals...he liked the snakes the best. then we went to the store and got another dinosaur movie and a dinosaur toy that he picked out. Then we went out for a late lunch. It was a nice day. When we got back we just relaxed and watched movies. That evening he got his IVIG infusion.</div><br /><div>Day 8. Tuesday~ The Dr's all agreed that we could take Gavin home and be discharged :) They said that typically they like to keep their GI patients there for 2 weeks but felt that I was more then capable and experienced enough because of his other disease to make sure that he was on the right path. I assured them that we would do our best and call if anything changed at all. they gave him one more solumedrol infusion and early afternoon he was discharged....we were all so happy. But, we couldn't leave yet. We made our way to the infusion room for another infusion for his arthritis and uveitis. He got another pulse of steroids and his Actemra infusion. Finally, at 4:45, he was unhooked and free to go home :) He was so happy and exhausted. Gavin's little brothers were so happy to see him home but Gavin just wanted to go to bed and sleep.</div><br /><div> </div><div>~We have been home for 2 days now and he is doing a lot better. He still gets tired easily but is getting stronger and eating better each day. They say it will take a few months for him to get better. There is no cure for this ...or any of his diseases... but we can learn how to control it. </div><br /><div>I want to thank all of you who have been there for us since day 1. We need you all more then you know and it is very much appreciated!!! Thank you for the prayers! They are being answered and ou<img class="gl_photo" border="0" alt="Add Image" src="http://www.blogger.com/img/blank.gif" />r little Angel is getting better :) Thank you, thank you, thank you xxooxxoo</div><br /><div>We will keep you updated on his recovery :)</div><br /><br /><div>xoxoxo</div><div>The Smith Family</div><br /><br /><br /><br /><br /><br /><div></div><br /><br /><br /><br /><br /><br /><div></div><br /><br /><br /><br /><br /><br /><br /><br /><br /><div></div><br /><br /><br /><br /><br /><br /><br /><br /><br /><div></div></div></div></div></div></div>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8320663212130410269.post-59739728160984009802011-01-03T22:08:00.000-05:002011-01-03T22:20:27.196-05:00Praying for answers!Gavin is being admitted to the hospital tomorrow morning. They are worried that he may have another chronic disease. We will meet with infectious disease and GI doctors. They will do a scope on him. Not sure if it will be a stomach scope/rectal or both.<br /><br />I am actually happy that this is happening. I want answers and I want them now! I also want my baby to feel better. I hope that we will get the answers that we need so we can get him on the right track to recovery!<br /><br />Please keep him in your prayers! Thank you all so much! We will keep you posted on how he is doing!<br /><br />xxooUnknownnoreply@blogger.com1tag:blogger.com,1999:blog-8320663212130410269.post-82976151247623171662011-01-01T16:19:00.000-05:002011-01-01T18:05:36.359-05:001.1.11Happy New Year Everyone! I hope that 2011 will be full of Heath and Happiness for all of you!<br /><br />Sorry I haven't updated you about Gavin's cataract surgery. It has been a very trying couple of weeks for us. You see, Gavin ended up not getting the surgery! Yes, I know....AGAIN!!! I guess 'Third times a <span id="SPELLING_ERROR_0" class="blsp-spelling-error">charm</span>' is just a figure of <span id="SPELLING_ERROR_1" class="blsp-spelling-corrected">speech</span>. Anyways, we had our Christmas early as planned and everyone was able to make it (except for my brother who lives in Hawaii). It was pretty much perfect! The kids had a great weekend and so did the adults.<br /><br />Monday came around and I took Gavin in to his eye <span id="SPELLING_ERROR_2" class="blsp-spelling-corrected">Dr</span> here to check and make sure his eyes were clear for surgery. He passed with flying colors :) I called the Miami <span id="SPELLING_ERROR_3" class="blsp-spelling-corrected">Dr's</span> office twice...first to confirm the surgery date and second to schedule his <span id="SPELLING_ERROR_4" class="blsp-spelling-error">pre</span>-op for the surgery.<br /><br />Tuesday we packed up the kids and started our 5 hour road trip to <span id="SPELLING_ERROR_5" class="blsp-spelling-error">Bascom</span> Palmer. The kids were amazing... never complained and just enjoyed the ride. As we were sitting in the waiting room and trying to keep our bored kids occupied with lollipops, movies and games...Gavin finally got called back to the exam room. Tyler took him and in 10 minutes they were back out. They just asked questions. A few minutes later they c<span id="SPELLING_ERROR_6" class="blsp-spelling-error">alled</span> Gavin back again. I took him to the exam room and we played some word games while we waited for his <span id="SPELLING_ERROR_7" class="blsp-spelling-corrected">Dr</span>. His <span id="SPELLING_ERROR_8" class="blsp-spelling-corrected">Dr</span> came in and asked her questions...how is his health, medications and so on. Then she did her <span id="SPELLING_ERROR_9" class="blsp-spelling-error">pre</span>-op eye exam and was very delighted to see how 'healthy' his eyes were! No cells floating around...this means no <span id="SPELLING_ERROR_10" class="blsp-spelling-corrected">inflammation</span>!!!! This is the best she has ever seen his eyes and said that they are perfect for surgery!!! I was so happy and relieved and thought that we had finally done it...all this hard work of trying to keep him healthy enough has finally paid off and he will be able to have his surgery.....not so much.<br /><br />The <span id="SPELLING_ERROR_11" class="blsp-spelling-corrected">Dr</span> walked to the other room and told me that she has good news and bad news. Good news is that his eyes look great...bad news is that he can't have he surgery. Wait! What? I was <span id="SPELLING_ERROR_12" class="blsp-spelling-corrected">speechless</span>! I <span id="SPELLING_ERROR_13" class="blsp-spelling-corrected">literally</span> had no voice...it was like my vocal cords were <span id="SPELLING_ERROR_14" class="blsp-spelling-corrected">paralyzed</span>. I was in shock and just stood there staring at her. She then told me that when she called to schedule his surgery (that day) they were booked already. Well, I don't think it takes a <span id="SPELLING_ERROR_15" class="blsp-spelling-corrected">genius</span> to figure out that scheduling a surgery the day before the surgery is risky! Honestly, I think that she plain forgot because she <span id="SPELLING_ERROR_16" class="blsp-spelling-corrected">proceeded</span> to tell me that she was booked that day with surgeries.....<span id="SPELLING_ERROR_17" class="blsp-spelling-error">hmmmmm</span>?! Someone needs to get their story straight! I asked her if she could do it the following day and she said that would be a great day because it is not a busy day in the OR...but...she is going out of town. Again, I was left <span id="SPELLING_ERROR_18" class="blsp-spelling-corrected">speechless</span>! So, we left the office with a new surgery date of January 6.<br /><br />The drive home was painful. I think I cried most of the way. I didn't understand why this kept happening to Gavin. My husband and I felt lost, confused, upset, angry...but... a little part of me was kinda relieved. I didn't understand why I felt this relief. I kept praying for an answer as to why Gavin hasn't had his surgery yet.<br /><br />A lot of things have been falling into place ever since that day. When we got home I had a package waiting for me in the mail from my Aunt Gloria. It was a Rosary with a letter from her. I broke down into one of those -good but ugly- cries! It was perfect and just want we needed. A couple days later the kids and I drove up to visit with my sister. The next day Gavin started to take a turn for the bad. He was not doing well at all and was constantly going to the bathroom and stopped eating and drinking... for the most part. Tyler got up there Christmas morning and we called his Rheumy. She suggested that we take him to the ER...so we did. They gave him fluids, steroids and antibiotics...ran some labs and took a <span id="SPELLING_ERROR_19" class="blsp-spelling-corrected">culture</span>. His labs came back good (well, good for Gavin) and he was feeling better so we were sent home.<br /><br />Gavin is still having the same problems. Not much of an appetite, always going to the bathroom, the occasional vomiting, tired....<br /><br />He was scheduled for his infusion on December 30t<span id="SPELLING_ERROR_20" class="blsp-spelling-corrected">h</span>. Tyler took him and let me rest at home since I ended up getting sick. The infusion did not go as planned. Because of his symptoms they decided not to give him his <span id="SPELLING_ERROR_21" class="blsp-spelling-error">Actemra</span> infusion because it is an immune <span id="SPELLING_ERROR_22" class="blsp-spelling-corrected">suppressant</span> and if he has an infection the infusion will only make it worse. But they gave him his steroid and <span id="SPELLING_ERROR_23" class="blsp-spelling-error">IVIG</span> infusion along with more labs and another <span id="SPELLING_ERROR_24" class="blsp-spelling-corrected">culture</span>.<br /><br />That leaves us to today 1.1.11<br />So, now I see why Gavin was not meant to have this surgery yet. It's just not the right time. I really don't think that he is <span id="SPELLING_ERROR_25" class="blsp-spelling-corrected">strong</span> enough and his body has a lot more healing to do before it can handle the stress of surgery. God has answered my prayers and I am now shifting my focus. Before I was angry with the <span id="SPELLING_ERROR_26" class="blsp-spelling-corrected">Dr's</span> and staff at the hospital where he was supposed to have his surgery. Now I am thankful that the surgery didn't happen. His body would not of been able to heal with how it is now.<br /><br />So, I ask you for your prayers for our son! I hate watching him suffer like this...it is so hard! Please pray for healing and strength....he needs it.<br /><br />Good news is that he still has that awesome smile on his face and it gives me comfort knowing that he is not going to let anything break his Spirit and Charm! He is an amazing little boy...our little Angel :)<br /><br />Sorry this was so long. I actually left a lot out...I didn't want to totally bore you ;) I will keep you updated on how he continues to improve.<br /><br />Love to all<br /><span id="SPELLING_ERROR_27" class="blsp-spelling-error">xxooxxoo</span>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8320663212130410269.post-39494312203941021312010-12-15T14:23:00.000-05:002010-12-15T14:49:51.343-05:00The BIG day is approaching...<strong>Gavin's cataract surgery is still on schedule for next week! Please keep him in your prayers that he is healthy enough to have the surgery!!! These past 2 months have been rough...we are ready for the surgery to happen so he can heal and see better (so does he)! It sucks that his surgery is a few days before Christmas :( But, we are kinda lucky that the kids are still young enough to not realize what day Christmas actually is ;) That is why we are going to celebrate this weekend (also, the surgery is going to make him temporarily blind for about 2 + weeks)!</strong><br /><strong></strong><br /><strong>This Firday (the 17th) will be our Christmas Eve and we will leave cookies and milk out for Santa along with a note that Gavin will write for him. We will also leave an apple out for his raindeer (gotta take care of santas raindeer...). Saturday morning the boys will wake up to filled stockings, lots of presents under the Christms Tree, cookie crumbs on Santa's plate along with an empty class of milk and a missing apple. Hopefully Santa will read Gavin's letter and write him back :) The boys will also have a big surprise wating for them in their playroom.....no, I can't tell you what it is yet because it's a surprise :) Santa might even track in some snow from the North Pole.</strong><br /><strong></strong><br /><strong>That evening the whole family will be coming over and we will have a fun Christmas dinner and exchange gifts. The only one missing will be my brother Billy :( He will still be in Hawaii with the Army :( </strong><br /><strong></strong><br /><strong>I really want to make this Christmas special for Gavin! Seeing that he is only 5 and this is probably going to be the first Christmas that he will remember!</strong><br /><strong></strong><br /><strong>So, right now I have to leave to pick him up from school, but, please remember to keep him in your thoughts and prayers during this time...</strong><br /><strong></strong><br /><strong>Thank you and may you all have a wonderful holiday season and amazing New Year!!!</strong><br /><strong></strong><br /><strong>The Smith's</strong>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-8320663212130410269.post-22278213523304349352010-11-30T22:04:00.000-05:002010-11-30T22:17:13.012-05:00Infusion #94672543754826715237<div align="center"><strong>Well, tomorrow we head back to Shands hospital for Gavin's gazillionth infusion. I am kind numb to it all these days. I am trying so hard to stay possitive on the outside for Gavin...but...on the inside I am numb. I hate seeing him so sick all of the time. He is exausted!!! I am exausted!!! We are all exausted!!!</strong></div><div align="center"><strong>So, needless to say...5 am will be here before we know it so I am going to try to sleep now. I will update everyone tomorrow when we get home :)</strong></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8320663212130410269.post-62274411151155309102010-11-17T22:43:00.000-05:002010-11-17T23:59:41.325-05:00NOT AGAIN?!?!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQwm-q0N9Wv-3b9xACmDPhkOgJmlCQxHyjHd-JmyPsXQ8G5zaA8PCCAq0tlfBXs-S0esF-ZVfEdfeME6V68tXBYHRIDxAhyphenhyphenb6KdCTJPK0gDQvgqkhGzAF0Y3tYHOBzADzyC6xKkwtuqLws/s1600/022.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 244px; DISPLAY: block; HEIGHT: 314px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5540749540319963714" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQwm-q0N9Wv-3b9xACmDPhkOgJmlCQxHyjHd-JmyPsXQ8G5zaA8PCCAq0tlfBXs-S0esF-ZVfEdfeME6V68tXBYHRIDxAhyphenhyphenb6KdCTJPK0gDQvgqkhGzAF0Y3tYHOBzADzyC6xKkwtuqLws/s320/022.JPG" /></a><br /><div align="center"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQJGDxDJhmzpUT5LWfTIChm4lvndZgLocFFd3qI_fde-GNHdYPuu0z-2htGuzPVJ1soPyddJvSdsWz4rkURwVwa7L3lopFysDX9VrygNUMEeYjvwCgWGgW2XkgANNJBp3oMg0jvn9-9t24/s1600/010.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 287px; DISPLAY: block; HEIGHT: 202px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5540730923504870242" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQJGDxDJhmzpUT5LWfTIChm4lvndZgLocFFd3qI_fde-GNHdYPuu0z-2htGuzPVJ1soPyddJvSdsWz4rkURwVwa7L3lopFysDX9VrygNUMEeYjvwCgWGgW2XkgANNJBp3oMg0jvn9-9t24/s320/010.JPG" /></a> Well, it happened again....</div><br /><div align="center">We worked so hard to make sure that we crossed all of our t's and dotted all of our i's but Gavin's cataract surgery was canceled again :( I am taking this as a sign...a good sign. I am going to be positive about the Dr's decision to not operate at this time and wait another month. Her reason was because his eyes are too inflamed and if she operates it could cause more damage then good! And we don't want that!</div><br /><div align="center">But, the drive down was still a successfully one. He got steroid injections in both eyes (ouch) and she took some specimen samples from his left eye for a study (the same study they did on his right eye a few months ago). He was in A LOT of pain when he woke up and lost his voice from screaming so much :( He kept yelling that his eyes hurt and he can't see...it was a little scary. But, we got him some ice packs for his eyes and some Tylenol and he fell right back asleep for about 45 min. He woke up feeling much better and watched some of Toy Story 3~drank a lot of water. Then it was back in the car for our 5 hr drive home (actually, we made it in 4hrs & 30 min....woohoo).</div><br /><div align="center">So, the plan now is to wait and see what his results will be from the study and that will determine his treatment plan. Then, if all goes well he will have his surgery on Dec. 22ND. Please keep him in your prayers. He NEEDS to have this surgery done so he can see better! The cataract is only getting worse and fast!</div><br /><div align="center">Also, thank you for the kind calls and facebook prayers and comments! They mean so much to us!</div><br /><div align="center">XXOO</div><br /><div align="center">Julie</div><br /><div align="center"></div><br /><div align="center"></div><br /><div align="center"></div><br /><div align="center"><br /></div><br /><div align="center"></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8320663212130410269.post-59669241033661206182010-10-27T20:47:00.000-04:002010-10-27T21:12:32.126-04:00Infusion Day....<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4ObdorMau7s9aB0MG2KSPRQktlExWd0Fc5r1IJOSNFsF8T9Gv6_-qLdC_zVOaTTf854mRk-jGz3OCKx5tHhMhK8winLqi4sVbws52NRe1mE-g5HKd3xeCIwJW3ky2oKcwOBDnsOyM5akn/s1600/infusion102710.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 221px; DISPLAY: block; HEIGHT: 166px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5532898246353800178" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4ObdorMau7s9aB0MG2KSPRQktlExWd0Fc5r1IJOSNFsF8T9Gv6_-qLdC_zVOaTTf854mRk-jGz3OCKx5tHhMhK8winLqi4sVbws52NRe1mE-g5HKd3xeCIwJW3ky2oKcwOBDnsOyM5akn/s320/infusion102710.jpg" /></a>
<br /><div><span style="color:#006600;">Today was Gavin's scheduled infusion day. He was supposed to get his remicade, solu-medrol & IVIG but just got his IVIG since he has a sinus infection and bronchitis. I just pray that his joints and eyes don't flare because of the missed infusions!!! He will be getting them next Wed. though :) </span></div>
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<br /><div><span style="color:#006600;">His doctor put him on 2 other/different antibiotics and Advair... We will start them tomorrow and hope and pray that it clears everything up! Remember, he can't have his cataract surgery unless he is "100%"!!!</span></div>
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<br /><div><span style="color:#006600;">They also gave Gavin an Albuterol breathing treatment while we were there and boy did it make him hyper!!!! He was running back and forth, in the infusions room, and jumping belly first on a rolling chair...lol...he was in rare form. He also blew a vein...but, of course it didn't hurt him and we didn't know until his IV came out.</span></div>
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<br /><div><span style="color:#006600;">We got to see out friends in the infusion room today...Heidi, Jake & Hannah...Jake was getting an infusion as well. They also bought a few of Gavin's bracelets...Thank You Guys <3></div></span>
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<br /><div><span style="color:#006600;">Hope everyone has a great rest of the week and safe Halloween weekend!</span></div>
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<br /><div><span style="color:#006600;">xxooxxoo</span></div>
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<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8320663212130410269.post-16575590840137020492010-10-26T22:17:00.000-04:002010-10-26T22:48:32.165-04:00RA Educational Program<div align="center"><span style="color:#000099;">Tonight was the rheumatoid arthritis educational program. It was very informational (what I got to see of it). Gavin was having a hard time because it was very cold in there and the cold air makes him have, asthma like, cough attacks. But, I got to bring some info home and it is ALL about <span id="SPELLING_ERROR_0" class="blsp-spelling-error">Actemra</span>!!! <span id="SPELLING_ERROR_1" class="blsp-spelling-error">YAY</span>!!! This is the drug that Gavin will be starting in Dec/Jan. It will take place of his <span id="SPELLING_ERROR_2" class="blsp-spelling-error">Remicade</span> infusions. I am so glad that I went...even though I couldn't stay. </span></div><br /><div align="center"><span style="color:#000099;"></span></div><br /><div align="center"><span style="color:#000099;">Gavin is feeling much better! I always have my car a/c set to 80 or higher (yes, even when it's hot outside) because I freeze if its any lower (my husband hates it). So, once he warmed up in the car he was feeling better.</span></div><br /><div align="center"><span style="color:#000099;"></span></div><br /><div align="center"><span style="color:#000099;">I am so ready for him to feel better! I hate it when he has these attacks! He hates it even more. They were so bad tonight that he was about to be sick and couldn't catch his breath. I am glad we are going to get his infusion tomorrow! Although....he was supposed to get his <span id="SPELLING_ERROR_3" class="blsp-spelling-error">solu</span>-<span id="SPELLING_ERROR_4" class="blsp-spelling-error">medrol</span>, <span id="SPELLING_ERROR_5" class="blsp-spelling-error">remicade</span> & <span id="SPELLING_ERROR_6" class="blsp-spelling-error">IVIG</span>, but now can only get his <span id="SPELLING_ERROR_7" class="blsp-spelling-error">IVIG</span> because of the sinus infection & bronchitis. I am worried that he will start flaring because he is going to miss his <span id="SPELLING_ERROR_8" class="blsp-spelling-error">remicade</span> & <span id="SPELLING_ERROR_9" class="blsp-spelling-error">solu</span>....but, if this is what is best for him then it's what we will do.</span></div><br /><div align="center"><span style="color:#000099;"></span></div><br /><div align="center"><span style="color:#000099;">Gavin made me SO PROUD today! As we were pulling up to his school...he told me that he didn't want me to walk him to class anymore because he knows the way now and can do it all by himself! I was speechless at first, I thought he liked me walking him to class, then had a huge smile on my face! He is growing up so fast! Anyways, I asked him if I could walk him to the front of the school and watch him walk to class...he said yes! But, he really wanted me to just drop him off and leave :( So, his little brothers and I walked him to the front and watched him walk to class...ALL BY HIMSELF!!!!! I was SO PROUD! I know it may sound cheesy to some people but he is my oldest so :p He was so proud of himself also! I talked to him about it when I picked him up today and he was grinning from ear to ear! He said he wants to do it everyday! ......Honestly, I think his teacher put him up to it. I don't think she like me coming in the classroom every time ;)</span></div><br /><div align="center"><span style="color:#000099;"></span></div><br /><div align="center"><span style="color:#000099;">Hope everyone has a great day tomorrow. It's off to <span id="SPELLING_ERROR_10" class="blsp-spelling-error">Shand's</span>, bight and early, for us!</span></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8320663212130410269.post-46386050084408152852010-10-25T10:22:00.000-04:002010-10-25T10:42:19.305-04:00Mommy, I don't feel good today...<div align="center"><strong><span style="color:#000099;">Gavin woke up this morning in his normal great mood. He was so happy it was Monday because he could go to school (he missed all last week because he was supposed to have cataract surgery in Miami, but the cancelled it as they were prepping him in the OR >:(...). Anyways, we dropped his brother off at preschool then went to his school. As his baby brother and I were walking him to class he tells me, "Mommy, I don't feel good." This was odd because he was feeling great an hour ago and he NEVER complains about not feeling well...even when he is flaring! I asked him what was wrong and he said, "My head hurts...it's too big." I asked him if he still wanted to go to school and he said yes. He told me that he will tell his teacher when he doesn't feel good and wants to go home. I told his teacher that his head is bothering him and he has a sinus infection and <span id="SPELLING_ERROR_0" class="blsp-spelling-corrected">bronchitis</span> and if he really feels bad to just call me and I will pick him up.</span></strong></div><strong><span style="color:#000099;"></span></strong><br /><div align="center"><strong><span style="color:#000099;">My poor baby! He did get his <span id="SPELLING_ERROR_1" class="blsp-spelling-error">Methotrexate</span> shot <span id="SPELLING_ERROR_2" class="blsp-spelling-corrected">last night</span>, but he has never had any side effects from it before. He has been on it for over 3 years! I hope he starts feeling better :(</span></strong></div><strong><span style="color:#000099;"></span></strong><br /><div align="center"><strong><span style="color:#000099;">I have a call in with his pediatrician about the results from his sinus and <span id="SPELLING_ERROR_3" class="blsp-spelling-corrected">chest</span> x-ray's. I hope she calls me TODAY to figure out a game plan to getting my little man better. In the meantime, I am going to fax a copy of the results to Gavin's <span id="SPELLING_ERROR_4" class="blsp-spelling-error">rheumatologist</span> and eye <span id="SPELLING_ERROR_5" class="blsp-spelling-corrected">Dr</span>. Hopefully they can figure something out together so we can get <span id="SPELLING_ERROR_6" class="blsp-spelling-corrected">Gavin's</span> cataract surgery done next month! Fingers crossed :)</span></strong></div><strong><span style="color:#000099;"></span></strong><br /><div align="center"><strong><span style="color:#000099;">Oh, by the way.....</span></strong></div><div align="center"><strong><span style="color:#000099;"><span id="SPELLING_ERROR_7" class="blsp-spelling-corrected">Arthritis</span>! You suck!</span></strong></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8320663212130410269.post-27286341461425212942010-10-25T00:40:00.000-04:002010-10-25T01:00:53.841-04:00In a book....<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtdWGqEwdZLyVwmz2IEFlbphf3UXg4sN6oGmxrYms07pRgt7nYs6dq4C_iDP-huaHyvZzroz35JRZlPEh7K8jpwiNxVnh6-CNO6y_AJVeEK3_7Z3_XWXDCaS1o5uoW5TVYwIUoc0uHIg_k/s1600/Gavinbook.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 203px; FLOAT: left; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5531842635410713554" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtdWGqEwdZLyVwmz2IEFlbphf3UXg4sN6oGmxrYms07pRgt7nYs6dq4C_iDP-huaHyvZzroz35JRZlPEh7K8jpwiNxVnh6-CNO6y_AJVeEK3_7Z3_XWXDCaS1o5uoW5TVYwIUoc0uHIg_k/s320/Gavinbook.JPG" /></a><br /><br /><div align="center"><span style="color:#000099;">Back in 2007 the Arthritis Foundation contacted us and asked us if they could publish Gavin's story about being diagnosed with Juvenile Arthritis. Of course we said yes! The book came out on my birthday in 2008! This is the essay that I wrote for the book.</span></div><br /><div align="center"><span style="color:#000099;"></span></div><div align="center"><span style="color:#000099;">The title of the book is called</span></div><div align="center"><span style="color:#000099;">"Raising a child with Arthritis"</span></div><br /><div align="center"><span style="color:#000099;"></span></div><div align="center"><span style="color:#000099;">You can buy it at amazon.com</span></div><div align="center"> </div><br /><div align="center"></div><br /><div align="center"></div><br /><br /><div align="center"></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8320663212130410269.post-24765293681092799862010-10-24T21:29:00.000-04:002010-10-24T22:55:33.689-04:00The Beginning....2005-now (2010)<div align="center"><span style="color:#000099;">Gavin was born on April 7, 2005! He was 10 lbs & 2.1 oz! It was the most perfect day in our lives! Everyone was there...my parents, grandparents, brother, sister, uncle & Tyler's parents! He had to be under the <span id="SPELLING_ERROR_0" class="blsp-spelling-corrected">Billi</span>-lights the last 2 days because he was jaundice, but that is pretty common. He was a great eater but soon developed an <span id="SPELLING_ERROR_1" class="blsp-spelling-corrected">intolerance</span> to dairy...that was very hard! He would be sick for hours after anything with dairy in it touched his tongue! But, we learned how to work around it.</span></div><div align="center"><span style="color:#000099;"></span> </div><div align="center"><span style="color:#000099;">The week <span id="SPELLING_ERROR_2" class="blsp-spelling-corrected">before</span> Gavin turned 1 he got a nasty virus...<span id="SPELLING_ERROR_3" class="blsp-spelling-corrected">Rota virus</span>! He was so sick and couldn't keep anything down so they <span id="SPELLING_ERROR_4" class="blsp-spelling-corrected">admitted</span> him to the hospital for 4 days. Once he was able to keep fluids in and not get sick we were discharged.</span></div><div align="center"><span style="color:#000099;"></span> </div><div align="center"><span style="color:#000099;">January 9, 2007...the day that changed our lives forever! I was 8 months pregnant with our 2<span id="SPELLING_ERROR_5" class="blsp-spelling-corrected">ND</span> son, Gavin had a cold (nothing but a runny nose and a cough) & when he got up that morning we did the normal <span id="SPELLING_ERROR_6" class="blsp-spelling-corrected">routine</span>. I got him out of his crib and put him in bed with me. Well, after about 15 min of being in bed with me he was <span id="SPELLING_ERROR_7" class="blsp-spelling-corrected">usually</span> down and running around. This morning he was different. We <span id="SPELLING_ERROR_8" class="blsp-spelling-error">layed</span> in bed for 3 hours!!!! I couldn't believe it! My mom stopped by and I told her I thought his cold was getting worse because he was still laying in bed. We got him up and when he went to stand he kept his right knee bent. Right away we noticed that his knee was swollen so I called his <span id="SPELLING_ERROR_9" class="blsp-spelling-error">pedi</span> right away. We took him to his doctor and they sent us to a <span id="SPELLING_ERROR_10" class="blsp-spelling-error">pedi</span> <span id="SPELLING_ERROR_11" class="blsp-spelling-corrected">orthopedic</span> <span id="SPELLING_ERROR_12" class="blsp-spelling-corrected">surgeon</span>. They took x-ray's and said that they "think" he broke his growth plate so he needed to be in a cast for 4 weeks! I started crying! I couldn't believe it! So, he gets the cast put on and he is put on an anti-inflammatory for the pain. </span></div><div align="center"><span style="color:#000099;"></span> </div><div align="center"><span style="color:#000099;">The next 3 weeks he was great! He was running, jumping, climbing...he never let his cast slow him down! The 4<span id="SPELLING_ERROR_13" class="blsp-spelling-error">th</span> week was a different story! The mornings were very hard for him. He couldn't walk and the anti-<span id="SPELLING_ERROR_14" class="blsp-spelling-corrected">inflammatory</span> weren't working anymore. </span></div><div align="center"><span style="color:#000099;"></span> </div><div align="center"><span style="color:#000099;">The morning of his appointment he was in so much pain! He wouldn't eat, smile or laugh! He also had a swollen left big toe...I thought he broke it with his cast! The morning of his appointment they took more x-ray's and also took some of his swollen toe. Then the tech took his cast off.....When his cast came of and we looked down at his knee we couldn't believe our eyes! Our little 22 month old had a knee the size of a large grapefruit! I asked the tech why his knee was so big and he said that it was normal! I told him to look at his knee because this is NOT normal! The tech then looked and was <span id="SPELLING_ERROR_15" class="blsp-spelling-corrected">speechless</span>. He then said he will be right back! We were so scared...what was happening to our baby?</span></div><div align="center"><span style="color:#000099;"></span> </div><div align="center"><span style="color:#000099;">The tech came back with the doctor and he look at Gavin's knee then at his x-ray's and repeated this, what felt like a million times! Then he said the words that I had never heard before, "I believe your son has Juvenile Rheumatoid Arthritis!" I just broke down crying! He then told us he needed to drain his knee to relieve some of the pressure. He called in 3 other employees and my husband, the tech and the other 3 employees held our son down while the doctor drained fluid from Gavin's knee! I sat in the corner and cried. I couldn't believe what was happening. It was awful! </span></div><div align="center"><span style="color:#000099;"></span> </div><div align="center"><span style="color:#000099;">When we finally left the office, we pulled into a Burger King parking lot and just sat there for about 2 hours! We just kept <span id="SPELLING_ERROR_16" class="blsp-spelling-corrected">replaying</span> was had just happened and wondered what this <span id="SPELLING_ERROR_17" class="blsp-spelling-corrected">meant</span> for our baby. I think we were in shock!</span></div><div align="center"><span style="color:#000099;"></span> </div><div align="center"><span style="color:#000099;">We got hooked up with a <span id="SPELLING_ERROR_18" class="blsp-spelling-error">pedi</span> <span id="SPELLING_ERROR_19" class="blsp-spelling-error">rheumatologist</span> and Gavin was put on <span id="SPELLING_ERROR_20" class="blsp-spelling-error">Naproxen</span>. Things were not improving and in a month his left wrist was swollen so on April 3, 2007 Gavin was put under and had <span id="SPELLING_ERROR_21" class="blsp-spelling-corrected">cortisone</span> injections in his right knee and left wrist. He was also started on weekly <span id="SPELLING_ERROR_22" class="blsp-spelling-error">Methotrexate</span> injections that I had to give him! </span></div><div align="center"><span style="color:#000099;"></span> </div><div align="center"><span style="color:#000099;">Because Gavin hadn't walked in months, his legs were atrophied and he had to start physical therapy. That, with the <span id="SPELLING_ERROR_23" class="blsp-spelling-error">meds</span>, helped him to walk again! He had a pretty big limp for almost a year after that but he didn't let it stop him.</span></div><div align="center"><span style="color:#000099;"></span> </div><div align="center"><span style="color:#000099;">Also, in that first year, Gavin developed <span id="SPELLING_ERROR_24" class="blsp-spelling-error">Uveitis</span>. <span id="SPELLING_ERROR_25" class="blsp-spelling-error">Uveitis</span> is inflammation of the Iris (arthritis in the eyes)! This is very painful and Gavin's was very aggressive! They changed his <span id="SPELLING_ERROR_26" class="blsp-spelling-error">meds</span> to <span id="SPELLING_ERROR_27" class="blsp-spelling-error">Enbrel</span> injections and steroid eye drops. When this didn't work they started him on <span id="SPELLING_ERROR_28" class="blsp-spelling-error">Humeria</span> injections. When that didn't work the had to do eye surgery! First they did a surgery where they scraped away at the scaring of his pupil from the inflammation. Second surgery they had to remove a cataract from his right eye. Third surgery they had to remove scaring around the pupil from his other eye. Then, he was put on monthly <span id="SPELLING_ERROR_29" class="blsp-spelling-error">Remicade</span> infusions.</span></div><div align="center"><span style="color:#000099;"></span> </div><div align="center"><span style="color:#000099;">January 2008...Gavin's arthritis and <span id="SPELLING_ERROR_30" class="blsp-spelling-error">Uveitis</span> were winning the fight! Gavin was shutting down! He wouldn't eat, drink, talk, smile, walk or crawl! We couldn't pick him up without him crying in pain! He was so depressed and in so much pain it was killing us! We tried for days to get <span id="SPELLING_ERROR_31" class="blsp-spelling-corrected">in touch</span> with his <span id="SPELLING_ERROR_32" class="blsp-spelling-error">rheumatologist</span> with no luck. finally his pediatrician admitted him to the hospital because she didn't know what else to do. There Gavin was put on <span id="SPELLING_ERROR_33" class="blsp-spelling-corrected">Morphine</span> and put through so many tests! It was so hard on all of us. But, slowly he started coming back to us and eating and drinking on his own!</span></div><div align="center"><span style="color:#000099;"></span> </div><div align="center"><span style="color:#000099;">October 2010...Since then we have found a new pediatric <span id="SPELLING_ERROR_34" class="blsp-spelling-error">rheumatologist</span> and he has been a different kid! He is on a lot more medications but it is working! He is currently taking...<span id="SPELLING_ERROR_35" class="blsp-spelling-error">naproxen</span> 2x a day, <span id="SPELLING_ERROR_36" class="blsp-spelling-error">prednisolone</span> 1 x a day, <span id="SPELLING_ERROR_37" class="blsp-spelling-error">zantac</span> 2 x a day, calcium carbonate 1 x a day, D3 1 x a day, <span id="SPELLING_ERROR_38" class="blsp-spelling-error">methotrexate</span> injection 1 x a week, <span id="SPELLING_ERROR_39" class="blsp-spelling-error">leucovorin</span> 1 x a week, <span id="SPELLING_ERROR_40" class="blsp-spelling-error">remicade</span> infusion every 4 weeks, <span id="SPELLING_ERROR_41" class="blsp-spelling-error">solu</span>-<span id="SPELLING_ERROR_42" class="blsp-spelling-error">medrol</span> infusion every 4 weeks, <span id="SPELLING_ERROR_43" class="blsp-spelling-error">IVIG</span> infusion every 4 weeks, <span id="SPELLING_ERROR_44" class="blsp-spelling-error">rituxan</span> infusion every 3 months, multi-<span id="SPELLING_ERROR_45" class="blsp-spelling-error">vit</span>, <span id="SPELLING_ERROR_46" class="blsp-spelling-error">acidopholis</span>, fish oil & cherry pills daily.</span></div><div align="center"><span style="color:#000099;"></span> </div><div align="center"><span style="color:#000099;">Gavin has to have cataract surgery on his left eye now but other then that his eyes have been doing great! The swelling has been under control, thanks to his doctor @ <span id="SPELLING_ERROR_47" class="blsp-spelling-error">Bascom</span> Palmer Eye Institute!</span></div><div align="center"> </div><div align="center"><span style="color:#000099;">Sorry this is so long, but I have a hard time making long stories short. I will keep posting on our blog as we continue our journey with <span id="SPELLING_ERROR_48" class="blsp-spelling-error">JA</span>. </span></div><div align="center"><span style="color:#000099;"></span> </div><div align="center"><span style="color:#000099;">Did you know that there are 300,000 children clinically diagnosed with <span id="SPELLING_ERROR_49" class="blsp-spelling-error">JA</span>? <span style="color:#000000;"> </span></span></div><div align="center"><span style="color:#000099;">One of our goals is to spread awareness about this disease! Please help us with this goal! </span></div><div align="center"><span style="color:#000099;"></span> </div><div align="center"><strong><span style="color:#000099;"></span></strong> </div><div align="center"><strong><span style="color:#000099;"></span></strong> </div><div align="center"><strong><span style="color:#000099;"></span></strong> </div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8320663212130410269.post-21748848694654942762010-10-22T14:54:00.000-04:002010-10-22T15:00:42.920-04:00Results!!<div align="center"><span style="color:#3333ff;">We got the results from Gavin's chest & sinus x-ray's back today! He has a sinus infection & bronchitis :( So now we have to work on what kind of meds he will need to clear it all up so he can be cleared for his cataract surgery on November 17th! </span><span style="color:#3333ff;">Thanks everyone for the prayers and kind words! I guess it was a blessing in disguise that they cancelled his surgery!</span></div>Unknownnoreply@blogger.com0