tag:blogger.com,1999:blog-59668727408011863242024-03-27T02:38:17.258-04:00OI Believe in IsaiahFollow Isaiah David's journey to his life with Osteogenesis ImperfectaOIbelieveinIsaiahhttp://www.blogger.com/profile/01488751113716160019noreply@blogger.comBlogger407125tag:blogger.com,1999:blog-5966872740801186324.post-80038041585813997572017-04-26T10:13:00.001-04:002017-04-26T10:13:12.928-04:00Straight Tibias!<div class="separator" style="clear: both; text-align: left;">
Hi there! I wanted to make sure I stopped in to share that Isaiah's surgery was a success!</div>
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Those super bowed tibias are a thing of the past! Here's a picture of Isaiah getting his first look at them during one of his follow ups.<br />
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It was a long 6 weeks in the splints, and he couldn't wait to SCRATCH! haha<br />
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While Isaiah was splinted, we kept him busy outside of the house as much as we could (even quick trips to home depot! haha). He handled them much better than I expected!</div>
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As for how his legs compare from before, I'll let you see for yourself if you haven't seen these pictures on Isaiah's social media pages...</div>
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Straight legs! He now has AFOs too so that as he learns to bare weight on his legs, his ankles won't give out. AFO is short for Ankle Foot Orthodic. He really likes them, calls them his "socks", and asks for them all the time! Which is great because he should be wearing them all the time. :)<br />
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A post shared by Vicky (@oibelieveinisaiah) on <time datetime="2017-04-17T20:55:56+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Apr 17, 2017 at 1:55pm PDT</time></div>
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Isaiah just recently got cleared to resume his water therapy so I am hopeful that will inspire him to realize when he is now capable of! He does still need rods surgically placed in his upper leg bones, the femurs, but we're going to give him some time to fully heal before doing that. </div>
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For now, we are just finishing up another round of pamidronate and then it's back to the grind of life. :)</div>
Anonymoushttp://www.blogger.com/profile/13774500887246515938noreply@blogger.com0tag:blogger.com,1999:blog-5966872740801186324.post-76097411695317192022017-02-08T22:13:00.002-05:002017-02-08T22:13:44.499-05:00Dear IsaiahMy dearest Isaiah,<br />
I can't believe we're here. As I type this on my phone, you are laying next to me in bed at the Ronald McDonald House. I'm hearing the rhythm of your breathing and am overcome: tonight is the night before your fourth surgery- your first rodding surgery.<br />
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I remember seeing your bowed tibias (lower legs) on ultrasound. I remember the doctors saying they were curved into acute angles. I remember holding my breath at that fact. But tomorrow? Tomorrow your orthopedic surgeon is going to straighten them. He's going to place rods in them to stabilize the bones.<br />
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I've only ever wanted this for you since I learned of it...until the doctor recently gave his go ahead that he felt ready...then my mama nerves kicked in and I've questioned making this decision for you. I hope you understand we're doing what we feel is the best thing for your quality of life. <br />
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I love you so incredibly much.<br />
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Today we had a few appointments before your big surgery, had time to kill between them, and bumped into one of the NICU doctors who took such wonderful care of you at the beginning of your life. He looked so very proud of you, of how far you've come. He was even beaming through your temper tantrum...(lord help me. 3 is so very hard.)...it was so perfect that we bumped into him as he reminded me of the beginning of your journey...it's like we blinked and here we are: You defiantly trying to go go go, independently in your wheelchair, and as frustrating as it was, it is such a gift. It was such a gift to have to chase after you through the halls of the hospital today. And omg did I have to chase you today...<br />
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Isaiah, I remember your beginning, constantly questioning, constantly worrying and holding our breaths, wondering if we were making the right decisions....and here I am again with my doubts and concerns. But you've got this. Your doctor has got this.<br />
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You are going to rock this.<br />
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I believe in you, Isaiah. And love you forever and always.<br />
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Love,<br />
Mama <3<br />
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To my poor neglected readers...I'll do my best to update. I'm having trouble adding pictures to the post. Boo. But check us out over on Facebook and /or Instagram for updates and pics! <3OIbelieveinIsaiahhttp://www.blogger.com/profile/01488751113716160019noreply@blogger.com0tag:blogger.com,1999:blog-5966872740801186324.post-62171854397477410072017-01-08T21:34:00.000-05:002017-01-08T21:34:02.203-05:00Happy 2017Happy New Year! I cannot believe it's 2017 already...where did 2016 go? If you only follow here on the blog, we kind of dropped off the face of the earth back in September....<br />
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Blogging, parenting two littles, and juggling the lemons life has been throwing my way has taken over my brain. I used to find time to blog when Isaiah would nap or go to bed for the night....but he no longer naps regularly (BIGGEST SIGH EVER) and Jacob is still working on his nap schedule. In those rare moments when they are both down, I totally sit in the quiet...<br />
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<i>and just sit.</i><br />
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If you follow us on social media (you can see my instagram account on the right side of our blog), you know we've been chugging along and keeping busy.<br />
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For Halloween, Isaiah dressed as his favorite Disney villain- Captain Hook!<br />
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and of course Jacob was his trusty sidekick Mr Smee...<br />
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I threw the costume together myself. Because of Isaiah's size, most of what is available in stores is really babyish looking...so thanks to the Dollar Tree (the hook, hat and sword), Amazon (the ruffled shirt), and what we had around the house, we DIYed a pretty fun look for him. His daddy created the "Jolly Isaiah" (Hook's ship is called the Jolly Roger). It was even on little caster wheels (you know those wheels that come with plastic drawers? Well I never use them and yet continue to hoard them. Glad I've kept them around! It really made the ship "sail" smoothly.<br />
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Before we knew it, it was Thanksgiving.<br />
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We spent the holiday with family and Isaiah cracked up at his shirt the whole day... "turkey. pie. nap. rePEAT!"<br />
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We went right into celebrating Isaiah's favorite holiday on the day after Thanksgiving...<br />
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and then we hit a snag...a week before Christmas, Isaiah caught the dreaded stomach bug which hit him HARD and so quick. It started at 10pm, when he had been sleeping for hours...and thank goodness his daddy heard him choking because I had been so exhausted that I didn't wake. Isaiah can't yet independently sit up so when it hit him, he couldn't get up to get it out and he was in such a panic that he didn't think to turn on his side. Dave luckily picked him up....it was a mess....but the alternative would have been much worse. He ended up waking about 6 times total overnight to throw up. It was just awful. We started laundry at 3am because we ran out his bed protectors and had to get creative....the next morning I gave him some Tylenol and it helped perk him up a bit. He hung out with us in the living room watching Christmas movies on the couch and falling asleep for the rest of the day. I didn't force him to eat or drink, but I constantly offered. When he asked for anything, he'd throw it up as soon as it was swallowed (no matter the amount). Awful. His daddy had the stomach bug just a week before and all he wanted to do was sleep....so we allowed Isaiah to do the same, thinking it was good for him...but we soon learned that dehydration sets in much much faster in a child than an adult. When he awoke in the morning, he was still refusing to eat or drink, very sleepy, and whenever we'd pick him up, he's talk in crazy jargon. I got panicked that maybe we were wrong on thinking it was a stomach bug and that maybe it was his shunt malfunctioning (Isaiah has hydrocephalus and a shunt in his head to alleviate the pressure. Shunts can malfunction and cause pressure on the brain. Symptoms vary person to person which makes it very hard to guess when they are malfunctioning.) This was a Sunday morning and I truly didn't know what to do...but thankfully Isaiah's favorite doctors responded to my texts/emails, I spoke to the neurosurgeon on call at DuPont, and and was advised I take him to DuPont (I considered taking him locally but we thought that the hospital that had previous images of his brain would be best)....so I did. <br />
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Thankfully, since I had spoken to the on call neurosurgeon already, Isaiah was put on the list to be seen in the ER so he was taken literally right away. <br />
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Taking a medically complex child to an ER is difficult. OI is rare. Because of the severity of his OI, he breathes differently. Everything felt "worse" because of his being sick on top of his every day issues. I had to be confident in my answers to questions so the staff didn't over-react (that sounds rude....but what i mean is, Isaiah's breathing looks labored to the medically-trained eye, but it's not it just looks that way because of the shape of his rib cage. If I sound unsure, they are unsure and it just snowballs...). Thankfully they got blood work right away and swabbed his nose to test for sickness. The nurse tested his glucose level. It wasn't even registering on her monitor- that's how low it was. She sent it to the lab with a "stat" label for an exact number and asked if he's had issues with his sugar levels ever before....no. He gets blood work done regularly before pam treatments. It's never been dangerously low, but he hadn't been able to keep anything down in over 36 hours.<br />
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His level came back: 20. The lowest they wanted to see the glucose level is 60. <br />
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I dont know how he wasn't seizing.<br />
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There was a swarm of doctors and nurses. They accessed his port (he didn't even make a peep where he'd normally scream his head off). The nurse very very quickly loaded him with fluids and what she called "a sugar shot" and just like that, he woke up, started crying, started talking.<br />
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Results from his nasal swab came back and he had tested positive for rhinovirus....which sounded scary to my panicked mom brain but turns out that's just a cold....(cough cough<i> just call it that</i> cough cough).<br />
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Isaiah was admitted because he was so very severely dehydrated.<br />
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We spent the next 2 nights inpatient.<br />
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I learned that a person who is 18 pounds typically drinks 24 ounces in a day....but my son is not typical. Isaiah was getting that amount through an IV in his port. After over 24 hours, his face and feet started to swell. His daddy and I got concerned that we were overdoing it with the fluids....yes he needed them, but 24 oz a day just seemed like it was too much for his body. Trying to explain that to doctors (when i am just a stay at home mom, no medical background) is not easy, but thankfully, the doctors heard me out and agreed to back off. It was a bit of a tug a war over it, back and forth....because I lacked confidence on Isaiah's typical fluid intake....but eventually Isaiah agreed to eat and started to drink more like his normal and I asked to discharge. <br />
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I've now observed that Isaiah typically drinks between 18-20 oz per day. :)<br />
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The few days left before Christmas and the holiday itself were a whirlwind. We let Isaiah rest as much as possible and thankfully he got his appetite back (and then some). He went right back to singing Christmas songs and watching movies (He took a liking to Elf while in the hospital...I was watching it when I thought he was asleep ha...so we watched that quite a few times.).<br />
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Christmases of the past usually involved a lot of travel for us, but with losing my dad earlier this year and everything that occurred within just that week, we decided a quiet Christmas at home was just what we needed. <br />
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Santa, and quite a few sweet family members, spoiled all three of our little loves.<br />
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Isaiah loves his very own dollhouse and Jacob loves his activity table...and Santa never goes wrong with treats for Carl lol...<br />
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Dave and I felt extremely grateful we were able to be home together with our little family.<br />
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The rest of the break was recovery mode for the entire household...with all that togetherness and time of sharing, Isaiah spread his cold to ALL of us. I can laugh about it now...ha<br />
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and now it's 2017. Geez I still can't believe it. Along with the hustle and bustle of life with a baby and a toddler, my mom has been sick and in and out of the hospital....that's taken over a bit of my brain. I don't so much want to share her medical issues without her permission but it's been so hard on her and my sister and it is difficult for me bc we don't live as close as I'd like us to.<br />
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On top of everything, toddler life with OI....this year should bring BIG changes to Isaiah's life in reference to his OI- namely, RODS. Isaiah is due for his next dose of pamidronate soon and along with that we have a Dexa scheduled. The Dexa will show his doctors Isaiah's bone density and will give a clearer picture of how well Isaiah's bones will hold rods. <br />
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I also want to focus on Isaiah's teeth this year and getting them protected with caps...he has his next dentist appointment scheduled for February, so we'll hopefully work on getting that ball rolling then.<br />
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I hope your holidays were magical and your new year has started off wonderfully. Hopefully I'll pop back in again SOON! <3OIbelieveinIsaiahhttp://www.blogger.com/profile/01488751113716160019noreply@blogger.com0tag:blogger.com,1999:blog-5966872740801186324.post-20198890517223034812016-09-15T20:42:00.001-04:002016-09-15T20:43:53.312-04:00PRESCHOOLOh my goodness guys, so many changes in our life lately!<br />
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First of all, Isaiah officially became a big brother one month ago today!<br />
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And then today he became a preschooler!<br />
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Our adventures of getting Isaiah into preschool started in the late spring, where we began the process of an IEP for Isaiah. IEP stands for Individualized Education Plan. It's a very thorough document that a team of people (including myself) put together to form goals for the child. Back in May I took him to a local facility to get tested and where I was asked a ton of questions about him. He was quite uncooperative for his portion which in the end was to his benefit as it helped him to qualify to continue receiving physical therapy, occupational therapy, and speech therapy (he aged out of the Early Intervention program when he turned three years old). </div>
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In July, we went over details and came to an agreement on the plan that the teachers and therapists put together. The plan was for Isaiah to go to preschool after he turned three (and after we had his baby brother). We're starting out with just two half day sessions a week and will hopefully move to three days a week next year. While he is in school, he has a one-on-one by his side; I pushed for that one-on-one to be a nurse as there is no nurse on property at his preschool. That aspect took some work on my part (and some extra time to set up) but thankfully after calling five nursing companies, we found one willing to take on Isaiah as a patient. His nurse meets us at our house and I drive us over to school to drop them off and pick them up.<br />
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His nurse is super sweet and a mom of two as well. She was a very fast learner with how to pic Isaiah up (since we still never lift him under his armpits), put him down, and dress him.<br />
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Today was Isaiah's very first day. Honestly, I didn't expect it to be but everyone agreed on Tuesday so we went with it; it was a bit of a whirlwind. The school I chose uses <b>reverse mainstreaming</b>. 60% of Isaiah's classmates are typical and 40% of the class has varying needs. It's wonderful because it teaches children at a young age to accept different.<br />
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When I dropped Isaiah off, I stayed for a few minutes while the other kids came in. His class is mostly boys. They were all very excited to meet their new classmate and the coolest part is they saw <i>him</i>- I heard one asked about his chair but other than that they just saw "Isaiah", the new boy in class. He was very excited by all the toys in the classroom and would announce when he saw something he liked ("XYLOPHONE!") and his friends loved handing him what he was asking for. I decided to leave when I saw the whole class had arrived but he was so enthralled that I just snuck out (and yep, totally bawled in the car.)<br />
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He has a speech therapist come pull him out of the classroom for his speech time and his occupational therapist comes in for snack time. His physical therapist will also come in to the classroom. His class includes music class and even swimming (!!!) once a month too. <br />
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To say that Isaiah loved it was an understatement. His nurse told me that he spent most of the time smiling and laughing. When I picked him up and we locked eyes and he just lit up! He started excitedly waving at me and yelled "HIIIII" which just made my heart burst into a million pieces. He was WIRED for hours. When we got home, he inhaled his lunch and looked so very exhausted but instead of napping, he just excitedly rolled around in his bed giggling and saying his one classmate's name.<br />
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I do believe this was a good decision to start Isaiah in preschool...I was hesitant because he just turned three but Isaiah needs that social interaction. It's just going to help him soar, I can just feel it. I have to get used to such a quiet house for the time he is in school though...:)</div>
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OIbelieveinIsaiahhttp://www.blogger.com/profile/01488751113716160019noreply@blogger.com1tag:blogger.com,1999:blog-5966872740801186324.post-33703887057476621422016-08-22T06:00:00.000-04:002016-08-22T06:00:26.982-04:00Pam + OI Clinic<div class="separator" style="clear: both;">
Right before Isaiah officially turned 3 years old, we had a quick trip to duPont/Nemours for Isaiah's pamidronate treatment.</div>
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We made our way to the Ronald McDonald House on Sunday, since we were expecting to be at the hospital bright and early for treatment. We actually spent a lot of time enjoying what the McDonald House has to offer this go round....usually we stick to our room, dinner, and the play rooms. This time we checked out the library, did a craft one night, visited with some therapy dogs, celebrated Isaiah's birthday after the monthly meeting....we made lots of fun memories this trip!</div>
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Isaiah decided to<strike> torture us</strike> party all night Monday night (from about midnight to 4am)....and yet was still in ok humor for his first day of pam treatment....it was a long morning (especially for Dave and I) but was made so much fun by getting to hang with our pal Gavin, his family, and our new friend Maddie and her parents. She was so sweet with Isaiah! After pam was done for the first day, we headed to OI Clinic for x-rays and discussions with Isaiah's geneticist, his orthopedic surgeon, the PT we've worked with since Isaiah left the NICU, and more. </div>
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Isaiah fell asleep in my arms for some of the discussions, but ended up waking and showing off how he can scoot when laying on his back and how he can sit up on his own. His x-rays also did some showing off for him....his bones look beautiful. They are looking better than ever before. Guys, his body is looking ready for rods!!!! <a href="http://oibelieveinisaiah.blogspot.com/2015/09/our-first-oi-clinic-appointment.html">Last year</a>, his bones just weren't ready; if rods would have been surgically placed in his bones, they would have likely migrated right out, which would have meant more surgeries. But now, his bones are longer, stronger, and should be able to hold those rods...and he is showing interest in getting moving, which is something he wasn't showing last year. </div>
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We're expecting to schedule his first rodding surgery (his orthopedic surgeon does 2 bones at once, so it'll be a few surgeries over the years) for the spring, unless Isaiah fractures badly before then. If he does, it'll be done asap. Those little leggies will be straight before we know it! Until then, we're going to continue to push Isaiah to develop muscles in his legs by having him weight-bearing in his new gait trainer (that finally came!) and continue to give him incentives to get sliding and scooting on the floor. His arms have really developed some beautiful muscle thanks to pushing himself in his chairs, so if we can help develop his leg muscles? </div>
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The rest of our trip went very smoothly and quickly....Isaiah had an adorable therapy dog and his owner come and visit us during day 2 of pam and Isaiah just loved petting him.</div>
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<i>I spy Gavin! :)</i></div>
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He thankfully napped and slept well Tuesday into Wednesday which helped all three of us really enjoy the rest of the trip...</div>
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<i>Sitting next to the August birthday cake! Isaiah was the only birthday kid there for the month of August....and he sure enjoyed that cake!</i></div>
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<i>Working on a craft after dinner on Tuesday at RMH</i></div>
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And now we are switched to the 12 week dosage schedule since Isaiah is officially 3! This trip was so positive and full of good news! Hopefully they can all be this good. :)<br />
<br />Anonymoushttp://www.blogger.com/profile/13774500887246515938noreply@blogger.com0tag:blogger.com,1999:blog-5966872740801186324.post-68424882594051390502016-08-15T06:00:00.000-04:002016-08-15T06:00:09.690-04:00Isaiah turned 3!This past Thursday, Isaiah turned THREE YEARS OLD! He sure has come a long way in his three years.<br />
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Last weekend, we celebrated his 3rd birthday with some of his aunts, uncles, and his grandparents.</div>
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Thanks to <a href="https://www.icingsmiles.org/">Icing Smiles</a>, he had the most amazing cake ever! To go along with the pirate theme that you may have noticed in <a href="http://oibelieveinisaiah.blogspot.com/2016/08/isaiah-big-boy-room.html">his new big boy room</a> (which I wanted to mention- I did add the links to everything I could think of on there), the cake that his baker friend, Rachel, made also had a pirate theme...<br />
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It was so creative, yummy, and huge! I wish I had my phone ready to take video when Rachel brought it in. His little jaw dropped and his eyes were so huge. </div>
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We were really grateful for the awesome cake! Honestly, I have been having some feelings (I blame the hormones) of guilt that I couldn't throw Isaiah the big party we have thrown the past few years...but being so far toward the end of my pregnancy, and it being such a hot time of year, it would be been too much...especially since we had to leave for Delaware for his next pam treatment the next day. So I was extra grateful to Rachel and Icing Smiles for making his birthday feel special.<br />
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This was the first year that Isaiah was really into opening his presents- like he understood it! He realized that there would be something fun under the paper and it was worth the time to rip at it.<br />
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He can't get enough of his pretend food. (Both of these sets were made by Learning Resources and the quality is fantastic!)</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRV86zH6xU0aXwa6ZBu78yR7O9KZhBl1jv27hfD-f3R52FgjslUccLWHTDd4_R1Xp_LkRnd-XChUizyNTrCUXLhW1adz2xFo1kInWp3X1qWSV7MLS-qocaHF1F9zopRKmZgbVau7bme3Q/s640/blogger-image--1376266593.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRV86zH6xU0aXwa6ZBu78yR7O9KZhBl1jv27hfD-f3R52FgjslUccLWHTDd4_R1Xp_LkRnd-XChUizyNTrCUXLhW1adz2xFo1kInWp3X1qWSV7MLS-qocaHF1F9zopRKmZgbVau7bme3Q/s400/blogger-image--1376266593.jpg" width="400" /></a></div>
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Once Thursday came along, we had just a few more presents for Isaiah to open and he was absolutely thrilled again.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-6BOkQV8psPTWbbXwDUz46VQATXDIN3GC4bMQDZs7fXgTd0JlQYZtUirxVaGRcSDeeVN-cEJewZP08lTDJ73OnRfGh8b_mvc-dGecL1-cuevuF0uwhDs_rtPreJ3EpUKPFDIP-NMOM0M/s640/blogger-image--427011189.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-6BOkQV8psPTWbbXwDUz46VQATXDIN3GC4bMQDZs7fXgTd0JlQYZtUirxVaGRcSDeeVN-cEJewZP08lTDJ73OnRfGh8b_mvc-dGecL1-cuevuF0uwhDs_rtPreJ3EpUKPFDIP-NMOM0M/s400/blogger-image--427011189.jpg" width="400" /></a></div>
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Thanks to everyone for helping us celebrate Isaiah, whether you were here with us or wishing Isaiah a happy birthday from wherever you are, your celebrating with us was felt. It is so much fun to see Isaiah grow another year older. <3<br />
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With Isaiah becoming a big brother soon, it's about time that he moves out of the nursery and into his very own big boy room! I did a TON of changing my mind when it came to every aspect of this room...We wanted to create a space that would grow with him. We wanted to create a space that was accessible. We wanted a simple theme. </div>
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Ready to take a tour of Isaiah's big boy Pirate room? </div>
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This is what you see when you enter the doorway...</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr5yIPtNtAF74UCt7wOkQJrggAvNbUY0iIQVjdZZThZmIcoS7ZHjNdTK03RMdGaHQbBU5Sst6qehcVVaWhHSyilFP67dzmomnpUoqhBBJ0y_Dy62qlUZ5UCS9TATrur-S4sN-GYVMceUY/s640/blogger-image-911498135.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr5yIPtNtAF74UCt7wOkQJrggAvNbUY0iIQVjdZZThZmIcoS7ZHjNdTK03RMdGaHQbBU5Sst6qehcVVaWhHSyilFP67dzmomnpUoqhBBJ0y_Dy62qlUZ5UCS9TATrur-S4sN-GYVMceUY/s400/blogger-image-911498135.jpg" width="300" /></a></div>
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To the left is <a href="https://www.amazon.com/gp/product/B018EPD5I6/ref=oh_aui_detailpage_o03_s01?ie=UTF8&psc=1">a shatterproof mirror </a>at his height for him to play, brush his teeth, brush his hair, and just plain check out his handsome self. To the right (not visible in this picture, but is down below) is a cabinet that holds some of his clothes. <a href="https://www.amazon.com/Canwood-2234-9-Whistler-Junior-Bookcase/dp/B01E76OWLA/ref=sr_1_fkmr1_3?ie=UTF8&qid=1471028891&sr=8-3-fkmr1&keywords=whistler+espresso+bookshelf">The bookshelf </a>straight ahead holds his tshirts, onesies, and pants- all folded and accessible to him. <a href="http://www.target.com/p/shark-head-wall-decor-pillowfort/-/A-50075445">The shark</a> above the shelf is from Target (and so are the amazing <a href="http://www.target.com/p/twill-light-blocking-curtain-panel-navy-stripe--84%22x-42%22----pillowfort%E2%84%A2/-/A-50291058">blackout curtains</a>! They are fantastic!)- both from the Pillowfort collection.</div>
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The lamp on top of it is from Disney World! One of our cousins interned there and had this very cool lamp that used to be in the lobby of The Boardwalk Resort. How cool is that? Thank you again, Micheal!!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEim5CxmcCZOmrwtDh4XIN8PvgWWQctCIxMYNJFR5waMBxMYFWd_yz7NQWBZS5eDrZlBWO477HqDrXno4VUi4iU_yKvcbuz4rsBatg6289oSzMyELR0VANcpjV2qUXtPaAT9-7vuNozsNoA/s640/blogger-image-494021146.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEim5CxmcCZOmrwtDh4XIN8PvgWWQctCIxMYNJFR5waMBxMYFWd_yz7NQWBZS5eDrZlBWO477HqDrXno4VUi4iU_yKvcbuz4rsBatg6289oSzMyELR0VANcpjV2qUXtPaAT9-7vuNozsNoA/s400/blogger-image-494021146.jpg" width="400" /></a></div>
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Under the window is his clothes hamper, which isn't a permanent spot quite yet. To the right is what I lovingly call "the parking lot". It's an area where we'll keep various equipment (instead of having it all over the living room). The decal on the wall is from Etsy. </div>
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And here comes a picture of what I think will be considered a controversial choice for a bed....</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJkhamJPo8ik_8Q2AGJ9lfyjyEAJhJQLzqydsk_kjTR-OBgOQTgbRfvZ-7ZQ_qbP0Bl6zfKQtWZ-71-m6KsnHehjxdyhNuePoDrdXL59qYtrz8o-f45pQ6TNVnJpnBHD5qzPB7ozPXb18/s640/blogger-image-2118670420.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJkhamJPo8ik_8Q2AGJ9lfyjyEAJhJQLzqydsk_kjTR-OBgOQTgbRfvZ-7ZQ_qbP0Bl6zfKQtWZ-71-m6KsnHehjxdyhNuePoDrdXL59qYtrz8o-f45pQ6TNVnJpnBHD5qzPB7ozPXb18/s400/blogger-image-2118670420.jpg" width="400" /></a></div>
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Isaiah now has a<a href="https://www.amazon.com/Canwood-Whistler-Junior-Loft-Espresso/dp/B003BVJ7W2/ref=pd_sim_sbs_196_1?ie=UTF8&dpID=41y7TJfAjNL&dpSrc=sims&preST=_AC_UL160_SR160%2C160_&psc=1&refRID=PY74ZM049DR2J7RW34E6"> twin junior loft bed</a>! This baby is fantastic! It is the perfect height for Dave and I to get Isaiah in and out of the bed and there's room for him to play underneath for now! </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiG5Puna09v498xXvVuK0OulUIKAC9sXrtQEkkCgkVxLJfSosqa7159iK7SWUNPXSAPDc563r1CxB_u40ojwz0f5NnHxTBFhUYON1GxvsNivhkdv_vZjaGQDZYcK5hB2OIsMhvx8jYuFV0/s640/blogger-image--706761332.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiG5Puna09v498xXvVuK0OulUIKAC9sXrtQEkkCgkVxLJfSosqa7159iK7SWUNPXSAPDc563r1CxB_u40ojwz0f5NnHxTBFhUYON1GxvsNivhkdv_vZjaGQDZYcK5hB2OIsMhvx8jYuFV0/s400/blogger-image--706761332.jpg" width="400" /></a></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">We have the bed turned so the ladder is against the wall for now. Isaiah isn't able to sit up on his own yet and can't roll completely over- although the pictures are deceiving, there is plenty of rail to keep Isaiah safe and sound in his bed. </span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">When I've shown these pictures to friends with kids, they are clearly skeptical and worried. <i>I'd never put Isaiah in a situation that is unsafe</i>. I think my friends picture/ combine their kids ability/mobility and Isaiah's fragility. At this time, he can not get himself anywhere near over that bed rail. Once he shows any sign of being able or interested, we'll place a mattress (literally) on the floor underneath so that he will be able to transfer himself completely on his own. And someday his brother will join him in this room up on top. </span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">But for now, the underneath is Isaiah's favorite place in our house...but more on that in a minute. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9GAK8pKpNreNNiY05istbKpQNUptFGvwfCo0Y-m-FrR1olV3-1Xk2r6t_5GxotbDsRPsQLtLYj9gsnloHBfIefYNde58uxxxNXRPNPb5UJ2HV9CexDNkHPpFWNaknBBgUS31FbLWbJIc/s640/blogger-image-1122404721.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9GAK8pKpNreNNiY05istbKpQNUptFGvwfCo0Y-m-FrR1olV3-1Xk2r6t_5GxotbDsRPsQLtLYj9gsnloHBfIefYNde58uxxxNXRPNPb5UJ2HV9CexDNkHPpFWNaknBBgUS31FbLWbJIc/s400/blogger-image-1122404721.jpg" width="400" /></a></div>
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Oh, and notice there is <a href="https://www.amazon.com/Whistler-Junior-Door-Cabinet-Espresso/dp/B01E76OWZ6/ref=pd_sim_sbs_196_15?ie=UTF8&dpID=31goQOzX4LL&dpSrc=sims&preST=_AC_UL160_SR160%2C160_&psc=1&refRID=CVJFNCGA41XH6TQ2BERH">the cabinet</a> I mentioned, I have a tension rod in there with all of Isaiah's hanging clothes. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuX4nsVpm-Dwy6TUtguyTOEh_TEA5MdIT3N7iK4u_cjaqAdVfynbN0q0pbCr74SEbQ3Tp7Ltk1cNi7058i_KFiQc-9SPty7GuxNDsOoU94bBjF0tuKMYFBuSt1Ll_1qlPViXgMT12nNeU/s640/blogger-image-889547517.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuX4nsVpm-Dwy6TUtguyTOEh_TEA5MdIT3N7iK4u_cjaqAdVfynbN0q0pbCr74SEbQ3Tp7Ltk1cNi7058i_KFiQc-9SPty7GuxNDsOoU94bBjF0tuKMYFBuSt1Ll_1qlPViXgMT12nNeU/s400/blogger-image-889547517.jpg" width="300" /></a></div>
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I tried to get a picture of the room so you could see every angle. We've circled all around so you can see the doorway from the hallway in the picture below...</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoQiPW_yJ7vWKUc3-IQyE5Qu7UXwVBq_GQU1aBOGOrOQdzp8z0ZENyuVB9MILGlt56gupRmTdpu1nLgkZ_dQFerYDV5-G0C5YIRBTPGpgkb7UVplQ0efAHzUlPWaNkEcIUQ_GwbqJmlfY/s640/blogger-image--2021879983.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoQiPW_yJ7vWKUc3-IQyE5Qu7UXwVBq_GQU1aBOGOrOQdzp8z0ZENyuVB9MILGlt56gupRmTdpu1nLgkZ_dQFerYDV5-G0C5YIRBTPGpgkb7UVplQ0efAHzUlPWaNkEcIUQ_GwbqJmlfY/s400/blogger-image--2021879983.jpg" width="400" /></a></div>
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But as for Isaiah's favorite place? I've had some fun...continuing to overthink the accessibility. </div>
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We're using the ladder as a place to house some of his favorite cars and trains, his <a href="https://www.amazon.com/Melissa-Doug-1314-Learn-To-Play-Piano/dp/B00020V59S/ref=sr_1_1?ie=UTF8&qid=1471029146&sr=8-1&keywords=melissa+and+doug+piano">piano</a> is under there, and at some point we'll have something educational and fun on the back of the cabinet (a calendar maybe? I'm still deciding.). On the wall is a <a href="https://www.amazon.com/gp/product/B007UHG91U/ref=oh_aui_detailpage_o03_s00?ie=UTF8&psc=1">30"x14" magnetic board</a> with <a href="https://www.amazon.com/gp/product/B017JBR9F6/ref=oh_aui_detailpage_o03_s00?ie=UTF8&psc=1">some letters</a> for Isaiah to have fun with and have a "word party". </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiNpwryD9lu4evvDEkC3snuj6WaRM3nmbIAq-dWuwAdprBflA_iyNgJB2D863Cur9mZovG_ACwno8UXf0R05Ma4uaLz4r7xfUe-cCEMF6GaT5_0CK5R-6IwkL3SJ8Np77jU7fRNlZ4DFU/s640/blogger-image-756564742.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiNpwryD9lu4evvDEkC3snuj6WaRM3nmbIAq-dWuwAdprBflA_iyNgJB2D863Cur9mZovG_ACwno8UXf0R05Ma4uaLz4r7xfUe-cCEMF6GaT5_0CK5R-6IwkL3SJ8Np77jU7fRNlZ4DFU/s400/blogger-image-756564742.jpg" width="400" /></a></div>
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And then there is <a href="https://www.amazon.com/gp/product/B005EDVYIK/ref=oh_aui_detailpage_o07_s00?ie=UTF8&psc=1">his toy chest </a>that he can access from his Firefly Scooot. Some of his favorite books are up on top and he loves reading them under his bed. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiahl6zPSlbyo-IwiTX7YLVUeXEiKbtbcFYb3hPrisPPL84PGdTflouq_N1Do6c3BkocPCZHADdYX5CaTOn6cFkXVa_glqROxp_VErZ91v_9w769u3F72FWHcmwCicLD_Sdbd1H_T5VVew/s640/blogger-image-1336095793.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiahl6zPSlbyo-IwiTX7YLVUeXEiKbtbcFYb3hPrisPPL84PGdTflouq_N1Do6c3BkocPCZHADdYX5CaTOn6cFkXVa_glqROxp_VErZ91v_9w769u3F72FWHcmwCicLD_Sdbd1H_T5VVew/s400/blogger-image-1336095793.jpg" width="400" /></a></div>
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I hope to add some kind of rope or string lights under there at some point, I just haven't decided which kind yet. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRNSyFAMA75ZYlnWmC0uj9mwWRVr4SKj-wIvQOF_GcdVgd6oevqJvoxTqTMgpb8gyKLPDLOFfEEjs-T5L0hkkYWc4J7wlLKI_0NthzULC1srXQQHBb7r95_juOnSVKmJU2l_1f7x6AVJ0/s640/blogger-image-673954661.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRNSyFAMA75ZYlnWmC0uj9mwWRVr4SKj-wIvQOF_GcdVgd6oevqJvoxTqTMgpb8gyKLPDLOFfEEjs-T5L0hkkYWc4J7wlLKI_0NthzULC1srXQQHBb7r95_juOnSVKmJU2l_1f7x6AVJ0/s400/blogger-image-673954661.jpg" width="400" /></a></div>
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Isaiah is just starting to pick his clothes. The rod is a little high for the scooot but he's also getting used to reaching up again after a recent arm fracture so once he learns to trust his body, he'll be grabbing things off the hangers in no time. </div>
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Big kid!</div>
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He can even put his own laundry in the hamper! I knew what I was doing picking a foldable hamper ;) (ha I totally grabbed it for the pirate design and this is a very happy accident!)</div>
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So there you have it! A look at Isaiah's new room! </div>
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It is clearly Isaiah and Carl approved. :-p </div>
OIbelieveinIsaiahhttp://www.blogger.com/profile/01488751113716160019noreply@blogger.com3tag:blogger.com,1999:blog-5966872740801186324.post-91918402542663968072016-08-01T07:00:00.000-04:002016-08-01T07:00:14.834-04:00Bye Bye, Machines!<div class="separator" style="clear: both;">
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Remember Isaiah's beginning? Remember when Isaiah was admitted back into the NICU (precautionary and because they knew him there) for his very first full dose of pamidronate (what many in the OI community call "bone juice") and <a href="http://oibelieveinisaiah.blogspot.com/2013/09/its-all-fun-and-games-until-my-baby.html">he went into respiratory failure</a>? And then things changed. He had to fight for his life, he was put on new supports...instead of just needing oxygen, he needed extra pressure to help him breathe so he was put on a bi-pap and then a c-pap and he wore that 24/7. He went home on the c-pap, was diagnosed with severe obstructive sleep apnea...we had night nurses taking care of him, and we had <a href="http://oibelieveinisaiah.blogspot.com/2013/10/hospital-house.html">a new normal</a>.</div>
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and before we knew it, it was 6 months later, his obstructive sleep apnea was downgraded to moderate, and he was weaning off of that c-pap during the day (including nap time).</div>
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and then we weaned him off of needing to sleep with any supports because his apnea was downgraded again to mild...he just kept getting stronger. We s<a href="http://oibelieveinisaiah.blogspot.com/2015/08/bye-bye-cpap.html">aid goodbye to the main c-pap</a> that we had around...and only kept the travel stuff as a precaution (in case he got sick). </div>
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But now? As I mentioned in my last post, we've gotten the results of his recent sleep study....and his obstructive sleep apnea <b>is gone</b>. He still has a mild <i>typical</i> issue (that I can't remember the name of right now) but Isaiah's doctor officially discontinued our prescription for the machines and we have newfound closet space (just in time for baby!).</div>
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<i>Don't let the door hit you on the way out, Masimo and Trilogy. :-p</i></div>
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I have had a love/hate relationship with these machines. They were so intimidating; all the beeping, tube switching, new things to learn. They limited how we moved Isaiah. Sometimes they held us down, making us feel a bit trapped. </div>
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But..They helped us monitor him in ways I never expected to monitor my child...I could get a quick view of his heart rate and know if he was asleep, awake, hurting, etc. They let us be at home, instead of living in the hospital, while he gained strength. They helped Isaiah's body breathe efficiently while it got stronger, while <i>he got stronger</i>...</div>
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and for that we are eternally grateful. Every second that Isaiah was on those machines was worth it. They brought us to where he is today.</div>
OIbelieveinIsaiahhttp://www.blogger.com/profile/01488751113716160019noreply@blogger.com0tag:blogger.com,1999:blog-5966872740801186324.post-3441194803505483952016-07-25T07:00:00.000-04:002016-07-25T07:00:13.527-04:00An UpdateWhere has this summer gone? Oh I know, to doctor's appointments, therapies, and chasing after Isaiah.<br />
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I wanted to share a big detailed post about our Disney trip but time has been flying and my ability to sit down anymore (without falling asleep) is so limited. I did however wake up at 3 am the other day and couldn't fall back to sleep for the life of me thanks to pregnancy-induced carpel tunnel (I didn't know that was a thing! but now I can tell you it is and it <i>stinks</i>) which enabled me to finish putting together a photo book on Shutterfly (with my left hand because my right is out of commission thanks to the carpel tunnel)...<br />
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<a href="http://share.shutterfly.com/action/welcome?sid=0AcNmjNo5cuWLGYg&eid=118" rel="nofollow">Click here to view this photo book larger</a></div>
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<a href="http://www.shutterfly.com/" style="color: #6666cc;">Photo books</a> are the perfect gift for any occasion.</div>
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It was an amazing trip!<br />
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Since our trip, we've had a lot going on! Isaiah had another pam treatment (directly after we came home from Disney. <i>not sure what we were thinking scheduling like that!) </i>and sleep study.<br />
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Dave took him to his sleep study which gave me an opportunity to get a good night's sleep over at the Ronald McDonald House. The study went well...so well that Isaiah's pulmonologist told us that <b>Isaiah no longer has obstructive sleep apnea</b>. WOOOOT! It could definitely reemerge at some point, but for now we celebrate....and call the oxygen company to check if the doctor discontinued our script for everything so they can come take the backup cpap that we've had around "just in case".</div>
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We've spent the summer doing lots of summery things like swimming whenever we can, playing in the water table, and blowing bubbles...but as it's gotten hotter, it's gotten tougher for me to be outside, so we're also getting crafty and finding ways to have fun inside.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCnMIUIquU7BGodnc3O2lQtzB_-qDtBWI4F36Pk8xMdDLIolhBdHP_PLgrx7LtcbagqAY8tfMfY6BjNp6IqRdYQfu7ph6VRUPcfFZZovZ6tJ4gPz4tlJIYTiKH4smFG-xOGrN9mJQ5AYs/s640/blogger-image-651888768.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCnMIUIquU7BGodnc3O2lQtzB_-qDtBWI4F36Pk8xMdDLIolhBdHP_PLgrx7LtcbagqAY8tfMfY6BjNp6IqRdYQfu7ph6VRUPcfFZZovZ6tJ4gPz4tlJIYTiKH4smFG-xOGrN9mJQ5AYs/s400/blogger-image-651888768.jpg" width="400" /></a></div>
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I've also spent a bit of time trying to get <a href="http://oibelieveinisaiah.blogspot.com/2016/05/strengthening-those-legs.html">Isaiah's gait trainer</a>. We ordered it<b><i> two months ago </i></b>and now finally have an approval from insurance! There was quite a bit of miscommunication that I had to figure out once I had all the information on the company that Isaiah's PT had gotten the ball rolling with...but once I had the information and touched base with Isaiah's doctor, the approval came less than a week later. (If only I hounded two months ago?) <br />
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And we've just been getting ready for Isaiah's baby brother to arrive and get Isaiah ready for preschool! Details on that in the near future (I'm attempting to get some posts written over the next few days so I can stop being so neglectful. ;)</div>
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OIbelieveinIsaiahhttp://www.blogger.com/profile/01488751113716160019noreply@blogger.com0tag:blogger.com,1999:blog-5966872740801186324.post-80655742480740916472016-06-08T06:30:00.000-04:002016-06-08T06:30:05.451-04:00Big Brother IsaiahI shared some big news on<a href="https://www.facebook.com/oibelieveinisaiah/"> Isaiah's Facebook page</a> recently....<br />
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Sorry I am so slow to share it here....if you can't tell from the pictures, we were in Disney World! We took a beautiful 10 day trip (more details on that later) and then directly following that was a trip to DuPont for Isaiah's latest pamidronate treatment....life is just getting back to normal.<br />
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So, I kept this news a secret for a few reasons. I debated not telling you the reasons....but I am an over-sharer and I imagine some of you are thinking "<i>what the heck?"</i>. <i><span style="font-size: x-small;">oh, and, part of the reason for the extra silence on the blog for the last 6 months? I <b>hate</b> keeping secrets and was dying to tell you but my brain was taken over and I couldn't think of anything else to write about because I just wanted to shout "ISAIAH IS GOING TO BE A BIG BROTHER" from the rooftops.</span></i><br />
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Besides keeping this quiet publicly, we also kept this exciting news quiet personally with family and friends...just not as long. When we were pregnant with Isaiah, we spilled the news at just 6 weeks because we were just so excited....but then when we finally hit 20 weeks, and were hit in the guts with words like "lethal", it made me regret telling everyone so early because it wasn't just Dave and I who felt punched in the guts and filled with worry...everyone else was scared too and it has always been heavy on my heart.<br />
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We knew we wanted to make Isaiah a big brother, but with that thought, questions tend to come, questions like...."but aren't you worried you'll have another child with OI?"<br />
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I can't simply answer that question with a yes or a no. If God decided to bless us with another child with OI, we'd accept the OI, give s/he the best possible life, and love that child with all our hearts... just like Isaiah. but the idea that another of our children would be going through what Isaiah goes through (given s/he'd likely have the same type of OI), tore at my heart. I hate that Isaiah goes through the tough moments/days that he does. When he fractures, my heart breaks....I don't like to say that because it sounds selfish to me and when it happens I need to focus on Isaiah...but when he fractures and all is said and done, the tears flow and I ache, sometimes for days on end. Isaiah's OI is so out of my control and it can be hard for my mama heart. Although it's not about me, it's something I thought a lot about when I first saw the word "pregnant" on the pregnancy test in December.<br />
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<span style="font-size: x-small;">because every expecting mama should take a picture with </span></div>
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<span style="font-size: x-small;">the </span><span style="font-size: x-small;">stick they just peed on when it says "pregnant", ok? :-P</span></div>
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Along with that brain dump of a paragraph, I am going to give you a statistic given to me by Isaiah's geneticist. <b>We have a 2-5% chance of having another child with Osteogenesis Imperfecta</b>. 2-5%. That's a really small chance, guys. <br />
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Knowing that statistic, I went to my pregnancy confirmation appointment in January confident everything will be ok. I had Isaiah with me and he was rolling around in his wheelchair, happily eating goldfish, and playing on the iPad....I was in my usual weekday attire of sweats and a sweatshirt....not the best choice in clothes I know, but I go for comfort most days right now. Dave met us in the waiting room after work. Neither of us got a good vibe from the care provider. To cut to the chase, she looked at Isaiah with such a look of disgust and asked me if I was sure I didn't want to "discuss my options" because "it looked like [my] hands were very full." (Note: I do not fault the practice for this person and she was reported.)<br />
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Besides restraining myself from telling her to F the F off and a lot of $%&@*&$%& (Isaiah was right there, after all)....actually...in all honesty...I was in such shock by what she said that I just had to get out of there....I mean <i>my God, Isaiah was in such a good mood, rolling around, being goofy. My hands are </i><b style="font-style: italic;">VERY FULL</b>? <i>What does she know????</i><br />
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<i>Nothing. </i><br />
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<i>She knows nothing. </i><br />
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Along with her lovely opinion, she also made it that I had to be seen by their High Risk practice... being labeled high risk means a lot of extra appointments. and I really found the high risk label to be excessive so early on. When I questioned her on it, as to "why" I need to go to the high risk office, she stated it was "to educate [me]". <i>Isn't that cute?</i> (I went into that next appointment ready to take heads off....but thankfully they were knowledgable of our history and it went very well).<br />
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Since then, every other staff member I've met has been very kind. Some are inquisitive about Isaiah (since he's often with me for appointments), but I have no issue answering questions and showing OBs, midwives, and nurses that a severe OI diagnosis in utero is not awful like their textbooks taught them in medical school.<br />
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As Dave, Isaiah, and I were leaving that first appointment, I remember saying "We will tell no one. Not yet. I can't handle people we know reacting this same way right now." I became very nervous that everyone would react similarly.<br />
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At 14 weeks, we went in for an extensive ultrasound at the high risk office. We saw no signs of OI on the baby, and although that made me feel better, the doctors still wouldn't rule it out (2-5% chance, people). We felt mostly confident though and decided to share our news with family and friends.<br />
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As the pregnancy progresses, it has felt different than with Isaiah. I felt this baby very early on...17 weeks! By 18 weeks, I could feel the baby basically bouncing off the walls inside of me. Dave was even able to feel a few kicks.<br />
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At 22 weeks, we went in for our anatomy scan. Along with them checking the sex (which we had the tech write down for us and place in an envelope...we really did find out with the balloon in Disney World 4 weeks later!), they took good hard looks at the bones. At 20 weeks, Isaiah's leg bones were very curved and you could actually see fractures....there were no fractures to be seen on baby number two; everything was straight and bright white. The doctor (who actually happened to be the doctor who first tentatively diagnosed Isaiah's OI) ruled out OI for our second baby. Although we knew it, to have it confirmed made me feel a sense of relief.<br />
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We thought about sharing the news on Isaiah's social media pages that day, but then I started to over analyze again. He gains new followers all the time. People are often confused at first because of his size and call him a baby. I was so afraid people were going to react like "already?" or say something negative related to his OI and then I'd go all hormonal-pregnant-mama-lion-mode and I just didn't feel ready...so we waited until our Disney trip. We shared just hours after we found out we were going to have another little boy and I chose to share from Disney World <i>because I'd be distracted and wouldn't have time to over-analyze responses.</i><br />
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But thankfully, we didn't receive one negative comment....everyone was so happy for us and congratulatory. We have received hundreds of messages and comments across his pages full of so much love. I don't believe I've said it, but <i style="font-weight: bold;">thank you for that</i>. It meant so much to me (to us!) that so many of you are so truly happy for us. Thank you from the bottom of our hearts.<br />
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With Isaiah becoming a big brother, we have some big changes in store in our house. Isaiah will be moving to a big boy room! I have been busy changing my mind over and over again about the right decisions on that and we'll be sure to share that when we've started! (I just want to make sure I don't change my mind again. #kiddingnotkidding)! Along with that, I'll definitely be sharing details from our Disney vacation and our most recent pam trip. And I am sure I'll be giving you a brain dump or two about soon becoming a mom of TWO boys (and all the coincidences and such....like did you notice baby is due mid-August? We're on the exact same timeline as with Isaiah).<br />
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Ahh! Thank you again for your love, prayers, and congratulations. <3OIbelieveinIsaiahhttp://www.blogger.com/profile/01488751113716160019noreply@blogger.com2tag:blogger.com,1999:blog-5966872740801186324.post-21129980805783151202016-06-01T06:30:00.000-04:002016-06-01T06:30:07.188-04:00FaceTime with Isaiah<div class="separator" style="clear: both;">
oh Isaiah....he is so very obsessed with "talking" to everyone through FaceTime and phone calls. He will be lying in bed and yelling "Talk to Nan Nan? Talk to Aunt Tricia? Talk to Grandma? Talk to Pop? Talk to Baba? Talk to Uncle Ben?..." he names <i>everybody. and it's always at an inconvenient time.</i></div>
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I figure most people aren't interested in facetiming and talking to Isaiah at 6:30am so every so often I will go to another room and FaceTime with him myself...</div>
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Peek a boo, mama!</div>
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I use it as a great opportunity for him to read to me (below he is "reading" <i>Brown Bear, Brown Bear, What do You See?"</i>), and talk about letters, shapes, numbers, colors, etc...</div>
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It was really such a fun thing to do...until he learned how to hit the buttons himself and call others when I am making dinner. <i>There's nothing like hearing the oxygen company's automated system on speaker while you are trying to make dinner.</i><br />
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So for now, I've disabled FaceTime and only enable it when it's an appropriate time to use it (aka when I can supervise 100%). but it sure is adorable seeing him love to talk to his extended family. <3</div>
<br />OIbelieveinIsaiahhttp://www.blogger.com/profile/01488751113716160019noreply@blogger.com0tag:blogger.com,1999:blog-5966872740801186324.post-88398230972088744952016-05-25T06:00:00.000-04:002016-05-25T06:00:14.193-04:00Go Baby Go<div class="separator" style="clear: both;">
At the very end of April, I was stalking Facebook (as I do too often nowadays) and came across a post from UD goBabygo that they'd be having a free workshop only an hour away from us....all I had to do was fill out an application to see if Isaiah would be eligible. I got a call not too long after that he was and that they had a car for him!</div>
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We headed east and spent the day with Isaiah's "pit crew" who helped to make Isaiah's car safe for him. They added head support, a harness, an easy to push button to make it go, and so much more!</div>
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They worked so hard while we hung out!</div>
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Isaiah's crew did such an amazing job...from the head rest to the decorations!...the sad part is Isaiah has been deathly afraid of it.</div>
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and we were then hit with days upon days of rain which made it tough to go out and try it at home. <br />
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I did have a chance to show it to Isaiah at home on a brief sunny evening....but he just showed his fear again. :( I thought maybe it was because he was overwhelmed by all the supports? I tried his one support pillow to see if that would make it better for him but....</div>
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It was a no go. which is a total bummer because I'd love to see him cruising around in his very own beemer! For now, I've hidden it out of his sight and am hoping some time away from it and growth will make it more enticing to him.<br />
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Besides Isaiah's "drama llama" reaction (as I so lovingly described it when we tried to sit him in the car again), the whole experience was amazing! and it's so cool to give Isaiah some motorized mobility! goBabygo is a fantastic program offering mobility to kids who need it, opening up a whole new world to them. :)<br />
<br />OIbelieveinIsaiahhttp://www.blogger.com/profile/01488751113716160019noreply@blogger.com0tag:blogger.com,1999:blog-5966872740801186324.post-76051117031417485962016-05-18T06:00:00.000-04:002016-05-18T06:00:03.713-04:00Strengthening those Legs!<div class="separator" style="clear: both;">
Back in the beginning of April, Isaiah's PT brought<a href="http://oibelieveinisaiah.blogspot.com/2016/04/standing-for-first-time.html"> a Gait Trainer </a>for Isaiah to try.</div>
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The gait trainer was here for just a few weeks as we worked on ways to tweak it to make it work for Isaiah and figure out if it was something worthwhile to pursue with insurance.</div>
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Isaiah loved it. He loves having his feet on the ground and he loved trying to move in little ways. and I believe it woke him up to realize that his legs are useful parts of his body....since then, Isaiah has even been learning how to scoot when laying on his back!</div>
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<blockquote class="instagram-media" data-instgrm-captioned="" data-instgrm-version="7" style="background: #fff; border-radius: 3px; border: 0; box-shadow: 0 0 1px 0 rgba(0 , 0 , 0 , 0.5) , 0 1px 10px 0 rgba(0 , 0 , 0 , 0.15); margin: 1px; max-width: 658px; padding: 0; width: 99.375%;">
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A video posted by Vicky (@oibelieveinisaiah) on <time datetime="2016-04-22T18:07:17+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Apr 22, 2016 at 11:07am PDT</time></div>
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Once we gave the demo gait trainer back, I knew Isaiah needed to continue to "stand" so I spoke to a few other moms of kids with severe OI and one suggested the<a href="http://joovy.com/spoon-walker/"> Joovy Spoon walker.</a> It looked great! Not covered in toys, a removable tray, and can grow with a child to three different heights.</div>
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Isaiah immediately fell in love with it. I was bummed that even the shortest setting was just too tall for Isaiah. We found a way to modify it thanks to other parents of little people (who have modified theirs successfully), but in the meantime we've placed some foam under his feet so he has a ground to stand on.</div>
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Hopefully, we'll hear about the gait trainer soon. I know Isaiah's PT has written a letter of medical necessity and Dr B wrote a prescription for us so now we wait for insurance to approve it so we can order it! :)<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyuQBkABqM7z-3s6DxL9liNF9qUBL9LiuVXciRdL8Qqu3Nmv8oflGOztoc3csibnaEjNTSODBn2Fg-15u2a0c0qDywgu9d9t5ZdU0DEyL1ScPfSZEFI9oDtvh3fQ3q6i2rfhttDeu0uFo/s640/blogger-image-640126202.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyuQBkABqM7z-3s6DxL9liNF9qUBL9LiuVXciRdL8Qqu3Nmv8oflGOztoc3csibnaEjNTSODBn2Fg-15u2a0c0qDywgu9d9t5ZdU0DEyL1ScPfSZEFI9oDtvh3fQ3q6i2rfhttDeu0uFo/s400/blogger-image-640126202.jpg" width="300" /></a></div>
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but how amazing will it be when Isaiah really learns to walk in this baby?? :) After the last few weeks of Isaiah really working his legs, I am very optimistic! :)OIbelieveinIsaiahhttp://www.blogger.com/profile/01488751113716160019noreply@blogger.com0tag:blogger.com,1999:blog-5966872740801186324.post-31883642617220043232016-05-12T07:00:00.000-04:002016-05-12T07:00:33.157-04:00Countdown to Disney World<div class="separator" style="clear: both;">
The countdown is on....we've been having fun lately talking all about Disney World with Isaiah. We have been pretty obnoxiously excited for this one! Isaiah and I put together a simple paper chain countdown and we've had fun ripping a link off each day...</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmYwOJuSpJZcIwd8Ec3DtD8FAcSDYBhNhhP2g-mTVEa1htWcngvXYIhcoZaKUdPtt_j5qyU31B1726bP65YoSY-OfB8YY5L7QV2A_Rm97CupW3lcqOAwWs9ULmcvJn3TH6EBnO_eDkHbQ/s640/blogger-image-464264613.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmYwOJuSpJZcIwd8Ec3DtD8FAcSDYBhNhhP2g-mTVEa1htWcngvXYIhcoZaKUdPtt_j5qyU31B1726bP65YoSY-OfB8YY5L7QV2A_Rm97CupW3lcqOAwWs9ULmcvJn3TH6EBnO_eDkHbQ/s400/blogger-image-464264613.jpg" width="400" /></a></div>
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and then pointing, counting, and naming the numbers that are left...</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEin8-zWPS5T1hVW3M-C2JLrBueR-xNywaaqpfQ2RZMdPOek_fxg2XGU0FjPQUBcn-aerywpHF__spa6jB8_KPeSwLeMhZx8dua9XDzIacITtf93QT7jF6YnLVcjBHdYd-1wkEUWJlWMs44/s640/blogger-image-731273871.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEin8-zWPS5T1hVW3M-C2JLrBueR-xNywaaqpfQ2RZMdPOek_fxg2XGU0FjPQUBcn-aerywpHF__spa6jB8_KPeSwLeMhZx8dua9XDzIacITtf93QT7jF6YnLVcjBHdYd-1wkEUWJlWMs44/s400/blogger-image-731273871.jpg" width="400" /></a></div>
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Along with the paper chain, I put together a calendar countdown containing an activity to do each day. They range from simply "watching a Disney movie" or "eat Mickey pancakes!" to "play Toy Story Legos with daddy" or create something Disney inspired....</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2HV7t4-HYzJ0ispnd-lsQBBAwvc8jhDSsYqZajeBOjEvHRvppg55saLhDfyFIJMEvaDUJxmp1OPJvJ-qjgI5xVQnnXEuDbcFJVpyHVxlllwTth4RiH2B3Ny5drrDQ7dpJC3jfTnCBwQ0/s640/blogger-image-1796761888.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2HV7t4-HYzJ0ispnd-lsQBBAwvc8jhDSsYqZajeBOjEvHRvppg55saLhDfyFIJMEvaDUJxmp1OPJvJ-qjgI5xVQnnXEuDbcFJVpyHVxlllwTth4RiH2B3Ny5drrDQ7dpJC3jfTnCBwQ0/s400/blogger-image-1796761888.jpg" width="400" /></a></div>
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Thanks to Pinterest, we've made <a href="http://buggyandbuddy.com/the-lion-guard/?pp=0">a Kion megaphone</a> (Kion is from a new show on Disney Jr called <i>Lion Guard)</i>...that was more impressive to Isaiah when we were creating it than when it was complete.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRW6o59O6K783gXPhEuxPIezgjQMU-dL7i81U5cSbRO9dLKhTm_lM_pwLErvJ8r92dwa5uFC8AmJT0cuF67UlDKJayWnvgrEzTuQEMK3z5uLiYbJsNQJERI6mf6BJ6VdQHw988dAAoC8w/s640/blogger-image--2074153114.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRW6o59O6K783gXPhEuxPIezgjQMU-dL7i81U5cSbRO9dLKhTm_lM_pwLErvJ8r92dwa5uFC8AmJT0cuF67UlDKJayWnvgrEzTuQEMK3z5uLiYbJsNQJERI6mf6BJ6VdQHw988dAAoC8w/s400/blogger-image--2074153114.jpg" width="400" /></a></div>
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We created a Mickey sun catcher that I thought up...back in my days running a before and after school program, we'd have the kids color coffee filters with washable markers and then spray them with a water bottle so the ink would smear, let it dry, and create something fun (usually a butterfly)...</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsBkiCSl6fkZkaflURy-VyxEeVZVF9WRrJ3r6pWbzVQ_eS4wTzFCQ-2UcHKtxkizOk2Ci6IUiWkWJdk2BGSTCq1msmAtrMWuK6Dt1TIS1GXwYYMlvnhkm5917JHTJWSU4QeGcWFfDPE9s/s640/blogger-image-189347207.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="298" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsBkiCSl6fkZkaflURy-VyxEeVZVF9WRrJ3r6pWbzVQ_eS4wTzFCQ-2UcHKtxkizOk2Ci6IUiWkWJdk2BGSTCq1msmAtrMWuK6Dt1TIS1GXwYYMlvnhkm5917JHTJWSU4QeGcWFfDPE9s/s400/blogger-image-189347207.jpg" width="400" /></a></div>
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This time I enlisted my Cricut and made two 9.5" Mickey heads (using the Mickey Font cartridge, Mickey Tag, the uppercase O- just without the middle). Once the filter was dry, we glued it between the Mickey heads, hole punched the top and hung it in the window.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA_6pqR3q5KkHlExbzo_yiT7fObprnofl02sZF7A3-2C9SabypwS7kQQOFsRG3rxN2rVs_hFD1efOidwWi8dbV7br-83I7DoCfVAr1dOk3IF-o6TDvVwTCpHX4m0iqPQw84SGUC435JUs/s640/blogger-image--523913962.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="399" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA_6pqR3q5KkHlExbzo_yiT7fObprnofl02sZF7A3-2C9SabypwS7kQQOFsRG3rxN2rVs_hFD1efOidwWi8dbV7br-83I7DoCfVAr1dOk3IF-o6TDvVwTCpHX4m0iqPQw84SGUC435JUs/s400/blogger-image--523913962.jpg" width="400" /></a></div>
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We made binoculars based on another <i>Lion Guard</i> character, Ono, who is actually voiced by an actor who also has Osteogenesis Imperfecta (fun fact for you). (link to that idea is above with the Kion megaphone.)<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3V_grU3xSisiGX4Rlh95qpxdKlAWPfctDCfHQk7tGCazfSX2-2FsoxlzAjp0VyYmVGhWtCmRUja1vVS8s9gB9cQksFZOgtftHstVGGu9wM915MgXbXUfYaS1rOI5TeJ6XNbIiOVX_5p4/s640/blogger-image-1309431067.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3V_grU3xSisiGX4Rlh95qpxdKlAWPfctDCfHQk7tGCazfSX2-2FsoxlzAjp0VyYmVGhWtCmRUja1vVS8s9gB9cQksFZOgtftHstVGGu9wM915MgXbXUfYaS1rOI5TeJ6XNbIiOVX_5p4/s400/blogger-image-1309431067.jpg" width="400" /></a></div>
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And we've created <a href="http://www.toddlerapproved.com/2014/06/clown-fish-paddlepak-and-craft-for-kids.html?m=1">a clown fish</a> using painters tape, yardstick, and a dot art marker.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEVUhbkcADoXx6n7dDcedw_AhydX9YeSa91n22aNLoFjsP7gAxGupNUL2dJgC7RxuocA7wDLyetC8DZB7tkIqHFz_ihOO0T7-TFNYOw39aB9fb1AQDJ5XWrmUzY6ckMrrbqayc_LujpdY/s640/blogger-image-608229525.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEVUhbkcADoXx6n7dDcedw_AhydX9YeSa91n22aNLoFjsP7gAxGupNUL2dJgC7RxuocA7wDLyetC8DZB7tkIqHFz_ihOO0T7-TFNYOw39aB9fb1AQDJ5XWrmUzY6ckMrrbqayc_LujpdY/s400/blogger-image-608229525.jpg" width="400" /></a></div>
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We've had so much fun! The chain is getting smaller and we are getting more excited for our trip. We've started packing and putting things aside and are looking forward to <a href="http://oibelieveinisaiah.blogspot.com/2016/04/breathing-test.html">traveling <b>without oxygen</b></a> since Isaiah is strong enough to travel without it! We can't wait to share pictures and videos from our trip (I am promising myself that I will take tons of videos this time!)...ahhh is it time yet???? :)OIbelieveinIsaiahhttp://www.blogger.com/profile/01488751113716160019noreply@blogger.com0tag:blogger.com,1999:blog-5966872740801186324.post-58176576279029838262016-05-06T14:14:00.002-04:002016-05-06T14:14:31.697-04:00Wishbone Day!<div class="separator" style="clear: both;">
Today is Wishbone Day! Aren't sure what Wishbone Day is? It's the day of awareness for Osteogenesis Imperfecta. To celebrate it is simple: wear yellow! It's not a day to fundraise for OI or anything like that....it's just to bring awareness to this rare disease.</div>
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This is Isaiah's third Wishbone Day. His first, <a href="http://oibelieveinisaiah.blogspot.com/2014/05/wishbone-day-recap.html">we spent at the state Capitol building</a> and made it official in the State of Pennsylvania thanks to our friend Fallon and Senator Folmer. :) </div>
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These last two, we've had a good chunk of time at home to celebrate....I have gone a little crazy decorating and gathering everything yellow for Isaiah to enjoy.</div>
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And given him a grand entrance into the fun.</div>
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It's still up for debate on whether Isaiah is a fan of the streamers though...</div>
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<blockquote class="instagram-media" data-instgrm-captioned="" data-instgrm-version="6" style="background: #fff; border-radius: 3px; border: 0; box-shadow: 0 0 1px 0 rgba(0 , 0 , 0 , 0.5) , 0 1px 10px 0 rgba(0 , 0 , 0 , 0.15); margin: 1px; max-width: 658px; padding: 0; width: 99.375%;">
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<a href="https://www.instagram.com/p/BFEMazSyF6E/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">I'm pretty sure he wasn't as impressed with the streamers as he was last year. 😂💛 (after listening to the video, he's totally saying "Happy Wishbone Day, Carl" as Carl walked by lol 😂 #wishboneday #carlmarl</a></div>
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A video posted by Vicky (@oibelieveinisaiah) on <time datetime="2016-05-06T12:18:42+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">May 6, 2016 at 5:18am PDT</time></div>
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<a href="https://www.facebook.com/Nemours-90523951091/?fref=nf">Nemours</a> (Isaiah's favorite hospital) joined the OI Community in talking about raising awareness for OI. You can check it out <a href="https://www.facebook.com/Nemours-90523951091/?fref=ts">here</a>. </div>
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It's nap time as I type this, but we are looking forward to continue the fun when Isaiah wakes and his daddy gets home from work. In the meantime, I'll enjoy some down time and continue scrolling through Facebook and checking out how it's turned yellow for the day. :)<br />
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<a href="http://www.pinterest.com/pin/create/extension/?url=https%3A%2F%2Fwww.blogger.com%2Fblogger.g%3FblogID%3D5966872740801186324%23editor%2Ftarget%3Dpost%3BpostID%3D5817657627902983826%3BonPublishedMenu%3Dposts%3BonClosedMenu%3Dposts%3BpostNum%3D0%3Bsrc%3Dlink&media=https%3A%2F%2Flh3.googleusercontent.com%2F-3Y9dka36HrA%2FVyzZ8rgI8PI%2FAAAAAAAAFjE%2F_Op6LPdeN_c%2Fs400%2Fblogger-image-1834201486.jpg&xm=h&xv=sa1.37.01&xuid=8ABzEkWFFzBZ&description=" style="background-color: transparent; background-image: url(data:image/png; border: none; cursor: pointer; display: none; height: 20px; left: 42px; opacity: 0.85; position: absolute; top: 952px; width: 40px; z-index: 8675309;"></a><a href="http://www.pinterest.com/pin/create/extension/?url=https%3A%2F%2Fwww.blogger.com%2Fblogger.g%3FblogID%3D5966872740801186324%23editor%2Ftarget%3Dpost%3BpostID%3D5817657627902983826%3BonPublishedMenu%3Dposts%3BonClosedMenu%3Dposts%3BpostNum%3D0%3Bsrc%3Dlink&media=https%3A%2F%2Flh3.googleusercontent.com%2F-3Y9dka36HrA%2FVyzZ8rgI8PI%2FAAAAAAAAFjE%2F_Op6LPdeN_c%2Fs400%2Fblogger-image-1834201486.jpg&xm=h&xv=sa1.37.01&xuid=8ABzEkWFFzBZ&description=" style="background-color: transparent; background-image: url(data:image/png; border: none; cursor: pointer; display: none; height: 20px; left: 42px; opacity: 0.85; position: absolute; top: 952px; width: 40px; z-index: 8675309;"></a>OIbelieveinIsaiahhttp://www.blogger.com/profile/01488751113716160019noreply@blogger.com0tag:blogger.com,1999:blog-5966872740801186324.post-6186146636822459102016-04-27T15:14:00.001-04:002016-05-06T14:01:23.810-04:00Potty Talk<div>
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Sorry if you were looking for <i>that kind</i> of potty talk....because today I am literally talking about a potty. :-p</div>
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Trying to find a potty for Isaiah has been a challenge. I searched all of the local stores but steered clear of online for this one because I needed to see the hole and I needed to touch the seat/cushion itself. Physically, although Isaiah is 2.5 years old, he is the size of a 7/8 month old due to his OI (it can cause shorter stature). I don't know of any parent potty training a child at that age, let alone that size....so trying to find a potty that worked with a 7/8 month old sized-tush was a challenge.</div>
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I wanted to forget the whole thing and look into a <a href="http://www.rifton.com/products/bathing-and-toileting-systems/hygiene-toileting-system">Rifton Toiling System</a> but Isaiah's physical therapist (who would write the letter of medical necessity for the Rifton) wanted to search for a standard potty. So I did, I searched and I searched and I searched. Target. Walmart. Babies R Us. Buy Buy Baby...it was at Buy Buy Baby that I actually spotted a possible winner.</div>
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The hole looked smaller than any I have ever seen and the seat cushion is squishy!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifCe6HvYRs76U1PEqCEV8se6sd2WCFvFCencVLTxFhp7pfOHeIKeblqZ3-P1kXhQk7oD7lunCbFWMHC0r3m1BAD3dSy9EB8BzxARX5mg_aSvrRvY0abCK8kxkK9koOt2jpIfonJ9U-7u8/s640/blogger-image-268476374.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifCe6HvYRs76U1PEqCEV8se6sd2WCFvFCencVLTxFhp7pfOHeIKeblqZ3-P1kXhQk7oD7lunCbFWMHC0r3m1BAD3dSy9EB8BzxARX5mg_aSvrRvY0abCK8kxkK9koOt2jpIfonJ9U-7u8/s640/blogger-image-268476374.jpg" /></a></div>
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Plus MICKEY! (Link <a href="http://www.buybuybaby.com/store/product/the-first-years-by-tomy-disney-reg-mickey-mouse-3-in-1-potty-system/1043835683?Keyword=mickey+potty">here</a>....you can also find it on Amazon. I used a coupon, so I got it for a dollar less than Amazon was selling it for.)<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM7OAAeJsJiAlxYNbYdckUifPKesf7LCe9xMuN1bjiA2EtvIDJutcQswAMT-mg5hYA_JJimE2h9OevFU7aGME-ntQCIqZ4iUqNhtRzNrs21lslgWGShPkmzRdX3PB0oTFdCEJkRJFcuXw/s640/blogger-image-2011308120.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM7OAAeJsJiAlxYNbYdckUifPKesf7LCe9xMuN1bjiA2EtvIDJutcQswAMT-mg5hYA_JJimE2h9OevFU7aGME-ntQCIqZ4iUqNhtRzNrs21lslgWGShPkmzRdX3PB0oTFdCEJkRJFcuXw/s640/blogger-image-2011308120.jpg" /></a></div>
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If I captioned this, because of the look on his face, I'd say he's thinking <i>"OMG mama, don't take my picture when I'm sitting on the potty"</i></div>
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Isaiah is able to sit well on this potty with his femurs supported but his tush in the right spot on the hole. Also, I am able to get my hand in there to wipe and pick him up until he is able to wipe himself and get himself off the potty.</div>
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But I didn't like that it lacked support/arm rests....so I thought we could make something during a physical therapy session using PVC. One day we went to The Home Depot and grabbed quite a bit of materials...things I thought could work....</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQqlO_K5YlZG8Vx5n9ZRMijbujy5vymDZk3h5NdsF2Yt1vowl_QJuYYQtTDYtwlH6Btv1XrAHuHLEwcnqnSDjCW0oNaL4yFtsXRe-eltI12WTl7mbCVRgR_cdk7AUdNqMYPN_58singJw/s640/blogger-image-291927576.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQqlO_K5YlZG8Vx5n9ZRMijbujy5vymDZk3h5NdsF2Yt1vowl_QJuYYQtTDYtwlH6Btv1XrAHuHLEwcnqnSDjCW0oNaL4yFtsXRe-eltI12WTl7mbCVRgR_cdk7AUdNqMYPN_58singJw/s400/blogger-image-291927576.jpg" width="400" /></a></div>
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and brought it all home. Next PT session, Isaiah's PT put this together:</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTXOKaSC7PibC2a4wXYt1EJCCL0B6h3k7ltP5x4sszmVPtnoJiveSpbDjUw4qSKmnLJbYO3sNsv7JRguPWWjwOZyRhyphenhyphenAOR1NeOhx9zXNc_Pf-OE07D36vfU3NaDImRLm1utQSQalVFEws/s640/blogger-image--1109836239.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTXOKaSC7PibC2a4wXYt1EJCCL0B6h3k7ltP5x4sszmVPtnoJiveSpbDjUw4qSKmnLJbYO3sNsv7JRguPWWjwOZyRhyphenhyphenAOR1NeOhx9zXNc_Pf-OE07D36vfU3NaDImRLm1utQSQalVFEws/s640/blogger-image--1109836239.jpg" /></a></div>
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Supports! Although because I couldn't find certain connectors, we had to make it extra long...and guys, our bathrooms are teeny tiny and although we may use it in the living room, I wanted to have it sized to go in the bathroom <i>because I'm specific and stubborn like that.</i> So back to The Home Depot I went, grabbed a few new connecters, and let them sit in their bag for a few weeks (the original rail was made in the beginning of March)...until today....because today I was feeling motivated to get it done.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidQUPtFN4J4zxGq_GlEJ-cDrhmzSXQYxWepgtViLnnCbUGbf4ihYSizLl3xOkPJZMaXIdnuMP7swQh0o4UqFUzE2b5RRpaYI-amE5HtO2Gsa3HDeE-iL7c2841oqyIbmfE9bgOIGs8UtM/s640/blogger-image-2129974093.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidQUPtFN4J4zxGq_GlEJ-cDrhmzSXQYxWepgtViLnnCbUGbf4ihYSizLl3xOkPJZMaXIdnuMP7swQh0o4UqFUzE2b5RRpaYI-amE5HtO2Gsa3HDeE-iL7c2841oqyIbmfE9bgOIGs8UtM/s400/blogger-image-2129974093.jpg" width="400" /></a></div>
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I added a support to go behind Isaiah, making it structurally more intact and giving Isaiah something to lean against if he needs to....adding a piece of pipe insulation as well.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4B2aikq3T3zIrnCOAL9v7xSQknSPEasLQV8MCrbvPJcQtXkYqQVAYaTwTmhgjZHOYn6WfspsJb8TCVRbebtZVlCXNhYnLik6jhhyn992bsDflDftF1sB6RYzEJbd5rFoXdD8zuvH22rg/s640/blogger-image--509960666.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4B2aikq3T3zIrnCOAL9v7xSQknSPEasLQV8MCrbvPJcQtXkYqQVAYaTwTmhgjZHOYn6WfspsJb8TCVRbebtZVlCXNhYnLik6jhhyn992bsDflDftF1sB6RYzEJbd5rFoXdD8zuvH22rg/s640/blogger-image--509960666.jpg" /></a></div>
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Looking good, don't you think?<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqfz3jk71hEmDpLTMacrgPnppNqv24oBiBsRfcxsSCeADjLGspVxMAiu9Ku9ZUss1w0JGDvDEizkrkCPmtwiPXdYxlRCyDSaIBv1CGGEAdXpFhJ6ZHUQaIIdlO4577C1FU8AXrsJB1VCE/s640/blogger-image--1148517114.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqfz3jk71hEmDpLTMacrgPnppNqv24oBiBsRfcxsSCeADjLGspVxMAiu9Ku9ZUss1w0JGDvDEizkrkCPmtwiPXdYxlRCyDSaIBv1CGGEAdXpFhJ6ZHUQaIIdlO4577C1FU8AXrsJB1VCE/s400/blogger-image--1148517114.jpg" width="400" /></a></div>
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I also found these adorable tiny underpants on <a href="http://www.amazon.com/dp/B015K6BE94/ref=wl_it_dp_o_pC_nS_ttl?_encoding=UTF8&colid=3CJC1RM9V2YXJ&coliid=ISD95QTEBL7WW&psc=1">Amazon</a> for Isaiah to wear during training....clearly I'll need a few more pairs but this is a good start!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3RETlReAVgEtR7g75fj3LmOIg2yoFXPQjAMnCc45GVx86xf54z8qQl3umoLmPJqSsWlRUBbULkFfDnAr5yUo2ZUGyAn4GSOGKFHG_Z3E95YijxaLpAXRQs3cw-VOau2w5Trk9Cu5bBRk/s640/blogger-image--1535278064.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3RETlReAVgEtR7g75fj3LmOIg2yoFXPQjAMnCc45GVx86xf54z8qQl3umoLmPJqSsWlRUBbULkFfDnAr5yUo2ZUGyAn4GSOGKFHG_Z3E95YijxaLpAXRQs3cw-VOau2w5Trk9Cu5bBRk/s400/blogger-image--1535278064.jpg" width="400" /></a></div>
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All in all I think we are pretty ready to potty train Isaiah when he is ready....but I believe he needs a bit more time to mature some. ;-)<br />
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In the meantime, While I was putting this together, I took measurements of everything in case someone else would need to make something similar for their child.<br />
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<b>To make a PVC rail (with all 1/2" PVC and pieces), similar to this you will need:</b><br />
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<b>1- PVC and tube cutter (I got <a href="http://www.homedepot.com/p/RIDGID-PC1375-PVC-and-Tube-Cutter-23493/202056531">this one</a> while at Home Depot)</b><br />
<b>10- 2 foot pieces of 1/2" PVC (they were just $1.38 each and I overestimated with buying 10...but it gives leeway for mistakes)</b><br />
<b>4- <a href="http://www.homedepot.com/p/Formufit-1-2-in-Furniture-Grade-PVC-Tee-in-White-10-Pack-F012TEE-WH-10/205749432">Tee pieces</a></b><br />
<b>2- <a href="http://www.homedepot.com/p/Formufit-1-2-in-Furniture-Grade-PVC-90-Degree-Elbow-in-White-10-Pack-F01290E-WH-10/205749396">90 degree elbows</a></b><br />
<b>6- <a href="http://www.homedepot.com/p/Formufit-1-2-in-Furniture-Grade-PVC-3-Way-Elbow-in-White-10-Pack-F0123WE-WH-10/205749372">3 way elbows</a> with 6 <a href="http://www.homedepot.com/p/Carlon-1-2-in-PVC-Male-Terminal-Adapter-Case-of-200-E943D-CTN/202367545">male adaptors </a>if one of the holes is made to screw into (that's all I could find at my local Home Depot but the ones I linked look to be all the same)</b><br />
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<b>You'll want to cut your PVC. You'll need:</b><br />
<b>3- 14" pieces for the width of the railing (one covered in a 13" piece of pipe insulation or pool noodle...I had both on hand so I went with the pipe insulation)</b><br />
<b>6- 10" pieces for the height (this would vary depending on the size of your child)</b><br />
<b>2- 6" pieces and</b><br />
<b>6- 4.5" pieces (for the length of the rail.)</b><br />
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<b>And then piece it all together! (Pictured below, because describing this into words hurts my head. ;-)</b><br />
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and another angle...<br />
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<i>I took this picture before pounding it all together with a mallet so the one looks a bit off the 90 degree angle...but it just needed to be pounded in ;-) You could glue everything for good measure but so far just pounding it all really good has made it nice and tight.</i></div>
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And the best part?</div>
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It fits in our half bathroom just perfectly. :) I'll keep you updated when we begin this next phase of our lives.... but likely without pictures, because who wants to see a kid on the potty on the internet? (if you answered "nobody", I like you! I am absolutely an over-sharer in life...but that would just be too much for me. I do want Isaiah to love me when he's an adult. ha) :-P </div>
<a href="http://www.pinterest.com/pin/create/extension/?url=https%3A%2F%2Fwww.blogger.com%2Fblogger.g%3FblogID%3D5966872740801186324%23editor%2Ftarget%3Dpost%3BpostID%3D618614663682245910%3BonPublishedMenu%3Dposts%3BonClosedMenu%3Dposts%3BpostNum%3D0%3Bsrc%3Dlink&media=https%3A%2F%2Flh3.googleusercontent.com%2F-HB2oATVcKfk%2FVyEFzYPRY8I%2FAAAAAAAAFiY%2F3H6vSRbDZpg%2Fs640%2Fblogger-image--296555593.jpg&xm=h&xv=sa1.37.01&xuid=8ABzEkWFFzBZ&description=" style="background-color: transparent; background-image: url(data:image/png; border: none; cursor: pointer; display: none; height: 20px; left: 42px; opacity: 0.85; position: absolute; top: 4938px; width: 40px; z-index: 8675309;"></a><a href="http://www.pinterest.com/pin/create/extension/?url=https%3A%2F%2Fwww.blogger.com%2Fblogger.g%3FblogID%3D5966872740801186324%23editor%2Ftarget%3Dpost%3BpostID%3D618614663682245910%3BonPublishedMenu%3Dposts%3BonClosedMenu%3Dposts%3BpostNum%3D0%3Bsrc%3Dlink&media=https%3A%2F%2Flh3.googleusercontent.com%2F-HB2oATVcKfk%2FVyEFzYPRY8I%2FAAAAAAAAFiY%2F3H6vSRbDZpg%2Fs640%2Fblogger-image--296555593.jpg&xm=h&xv=sa1.37.01&xuid=8ABzEkWFFzBZ&description=" style="background-color: transparent; background-image: url(data:image/png; border: none; cursor: pointer; display: none; height: 20px; left: 42px; opacity: 0.85; position: absolute; top: 4938px; width: 40px; z-index: 8675309;"></a>OIbelieveinIsaiahhttp://www.blogger.com/profile/01488751113716160019noreply@blogger.com0tag:blogger.com,1999:blog-5966872740801186324.post-48182020361550274722016-04-20T07:30:00.000-04:002016-04-20T07:30:19.251-04:00Pop Pop<div class="separator" style="clear: both;">
Two weeks ago I was all "hey, I'm getting back into the swing of this blogging thing"....for a week. Last week I had a tough time sitting down to share anything because <strike>what</strike> who was most present on my thoughts wasn't Isaiah, it was his Pop Pop.</div>
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Last Thursday marked one month since my dad passed away. I've had a hard time comprehending that it's been that long when it feels like just moments ago that I got the phone call from my sister. And it was just 24 hours earlier that we spoke to him.</div>
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It's been hard to accept that I can't call him on the phone to talk to him about what salad dressing I had on my salad anymore :-p or that he's not involved in any more FaceTime calls with Isaiah....looking so proudly at his grand baby....and me.</div>
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He was a fantastic father. He was supportive, loving, always offering advice... He was an excellent example of how to be a loving, compassionate, and patient parent. </div>
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because he sure had to be patient with me... ;-)</div>
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I am so grateful that he was able walk me down the aisle and to see his first grand baby be born.</div>
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and that he put up with my obsession with the Backstreet Boys on the many car rides that he'd take me on to my friends' houses in my teen years...I'm grateful that when I smell cigar smoke, I am instantly brought back to Halloween nights of my childhood where he would wait on the sidewalk while my sister and I would trick or treat, cigar in hand, smiling at us as we ran to him with our loot. (He never liked that I thought of him when I smelled that, but it was his yearly smoke and it really was fun trick or treating)...I remember how he'd always come in and check on us before he'd head to bed, always stood in our doorways watching us sleep for a few moments,<i> and how I used to think it was creepy but now I do the same with Isaiah and completely understand the thoughts that went through his head while he stood there. ;-) (gratefulness and so much love)</i></div>
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Why do I share this now? Because as I reflect on recent days, Isaiah isn't asking for him as much as he was...but yesterday...yesterday he kissed Pop Pop's picture after asking to talk to him repeatedly. I had a hard time not crying when he wouldn't move on so we went outside to blow bubbles...together we blew bubbles to heaven for Pop Pop.</div>
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and after we watched a bubble go high in the sky, I put the bubble wand back in the bottle for more and when I lifted it out a big breeze came and surrounded us with bubbles. <i>Pop Pop blew bubbles for us</i>, that's what I said to Isaiah...and Isaiah said "Thank you, Pop Pop" while he giggled and tried to pop some of them.<br />
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Thank you Pop Pop, for being the best of the best. I will love you forever.OIbelieveinIsaiahhttp://www.blogger.com/profile/01488751113716160019noreply@blogger.com0tag:blogger.com,1999:blog-5966872740801186324.post-56621071693928743602016-04-08T07:00:00.000-04:002016-04-08T07:00:26.490-04:00STANDING for the First Time<div class="separator" style="clear: both;">
You read that right, my friend, for the first time in Isaiah's two and a half years of life, he got a glimpse of what it feels like to be upright with his feet on the "ground" (in quotes because we had to make a little adjustment there). Isaiah's PT brought a gait trainer to our house to try! Are you wondering what the heck a gait trainer is? Well, it's a device on wheels which helps a person who is unable to walk independently to learn (someday, kids!). It's slightly comparable to a baby walker but has a lot more supports available.</div>
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Initially, he was hesitant....but that seriously lasted no more than 10 seconds. </div>
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In the words of Isaiah, Ta Daaaaaaaa!!! </div>
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Look at those toes touching the ground...well...the top of our ottoman. Even the smallest gait trainer made by this company (the Rifton mini pacer) is too big for Isaiah, but only by a few inches and in all honestly, we're not intending to use it to teach Isaiah to walk just yet...the purpose of this for Isaiah is to give him a safe supportive piece of equipment to get the idea of standing in and to do <i>some</i> weight bearing to strengthen the muscles in his legs (there's actually a sling that he sits on which takes some of his weight). The ottoman topper works to perfectly help his feet touch the "ground" and is actually perfect because it has a bit of give so he's not pushing on a very hard surface (like our hardwood floors).</div>
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He seriously warmed up to this new position and device so quickly...</div>
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And after a half hour in it, I went to take him out, only to get this reaction from him...</div>
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"Not yet, mama!" His first time in a gait trainer and he spent an entire HOUR in there. It is very easy to get him in and out of it myself (and that's a mega perk in my book) and when the time comes that he wants to take steps, that ottoman topper is perfectly inside so he'd be able to walk backwards and forwards.<br />
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We have this on hand for the next week for Isaiah to continue to check out and we'll be doing some research/finding a DME (a company that can provide this) to order one for Isaiah sometime in the future.<br />
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It was so insanely amazing to see him like this today. To see him enthusiastic, with his feet flat, goodness, he has come a <i>looooong </i>way.OIbelieveinIsaiahhttp://www.blogger.com/profile/01488751113716160019noreply@blogger.com0tag:blogger.com,1999:blog-5966872740801186324.post-80443921264652866782016-04-06T06:30:00.000-04:002016-04-06T06:30:07.667-04:00Breathing Test<div class="separator" style="clear: both;">
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Yesterday morning, we ventured to DuPont for a breathing test in their PFT Lab. (PFT stands for Pulmonary Function Test.) Isaiah's been doing remarkably well in terms of his breathing....he hasn't needed his C-Pap, he no longer sleeps with his pulse ox (unless he's sick) because we don't need to monitor his oxygen levels....but last year we did this test and found out that Isaiah would benefit from oxygen when flying in an airplane.</div>
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<a href="http://oibelieveinisaiah.blogspot.com/2015/06/prepping-to-travel.html">Last year's test was traumatizing</a>...for <i>everybody involved</i>. Isaiah cried. I cried. Techs teared up. The doctor held Isaiah's iPad to no avail....Apparently after we left that day, their team sat down and said "how can we do this better?" (I would have thought they would have chalked it up to a grumpy and overwhelmed one year old (and a crazy over-emotional mama)....but nope, they are awesome and decided to reevaluate things. They now test one less aspect than they did before. The mask isn't as invasive and intimidating (last year's mask was covered in extra sensors and tubes)...</div>
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When we arrived yesterday, it was like they were waiting for us as this was the real test of their changes. We were a bit more prepared this time...Isaiah is a year older, and although he does still cry and fight things, he handles them better than last year...even if it is just <i>slightly</i> better. He has his wheelchair and thats what I try to keep him in when he sees his doctors and does tests as it gives him a sense of being in control of the situation. Daddy came along to give Isaiah a second, familiar and loving face as he sat during the test. I also let him do as he wishes on the iPad, which is his favorite thing in the world...and that's really what got us through this year's test. </div>
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The test is just ten minutes. They basically lower the oxygen concentration in the mask and have him on a pulse ox to monitor his oxygen and heart level.</div>
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and once he was calm, he did beautifully. They were able to get accurate, fantastic readings. Isaiah sat mostly at 97%. He did blip down to 93% once but it was so quick and not a concern.</div>
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and so we are so excited because ISAIAH DOES NOT NEED OXYGEN when we fly to Florida this summer! Last year, along with his stroller, travel highchair, car seat, car seat base (which we should have checked...lesson learned), and our regular carry ons for us and Isaiah (cough cough diapers, toys, SO MUCH EXTRA baby needs), we had to carry an oxygen concentrator (which was much bigger than we were anticipating) and a bag along with it (which held our pulse ox machine, extra probes for that, oxygen cannulas, tubing, etc etc etc). I am exhausted just thinking about it.</div>
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This time we are cutting the carry ons down, cutting the high chair (well that'll go into our checked baggage) and car seat base, and trying to go lighter....except well, we are bringing his wheelchair along with the stroller (and both will be gate-checked).</div>
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<i>"Hello? anyone there? My parents will probably still overpack."</i><br />
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I keep seeing bringing both as a positive....At the airport, he can travel around in his wheelchair and we can use his stroller to carry our carry ons and car seat. ;-) We weren't planning on bringing his wheelchair, but with Isaiah's independence and our comfort level with Disney World (yep, we're going back!), we want to have it for evenings here and there at the parks where we'll plan to just have dinner and meet a few characters. We also want it for around where we are staying so he can have some down time in it. (Last year we'd put him in the crib to unwind midday and he would just roll around and yell like a maniac. SO MUCH ENERGY from so much to see! The chair will get that energy out so he can get a good nap...hopefully....in my dreams.)<br />
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Seriously though....can't you just picture him wheeling up to Mickey? (ahhh my heart is bursting)<br />
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Honestly, I was not happily anticipating going through everything to get to Orlando and home....but now that we don't need to bring oxygen because our baby is so strong??? Let the count down to summer begin...Bring on our Disney trip!<br />
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and thanks to the awesome team at DuPont/Nemours for changing that breathing test to make it less scary for our Isaiah. You guys rock.OIbelieveinIsaiahhttp://www.blogger.com/profile/01488751113716160019noreply@blogger.com0tag:blogger.com,1999:blog-5966872740801186324.post-77785077636347131302016-03-30T06:30:00.000-04:002016-03-30T06:30:11.015-04:00Pam <div class="separator" style="clear: both;">
Last week, we headed down to Delaware for Isaiah's most recent pamidronate treatment. Once Isaiah turned 2 back in August, we were able to switch to a 10 week schedule (as compared to the 8 week schedule we were on previously).</div>
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We spent quite a bit of time at the Ronald McDonald House playing as we only had one extra appointment on this trip: a visit to the ENT on Tuesday. </div>
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Back in January, Isaiah battled a terrible ear infection in his right ear...this was supposed to be a follow up for that. That ear looked great this time (yay!)....<i>but</i> his left ear had an issue (BAAAAAH). </div>
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He had tubes surgically placed in his ears when he was 6 months old. Because of the shape of his ear canals, the tubes don't have a chance to fall out naturally like they do typically. This isn't totally a problem, except the tube in his left ear is clogged. We had to add in an extra appointment over at audiology where they did a hearing test. Isaiah's hearing is in the normal range, but just at the edge of that in the left ear. After the unexpected hearing test, we headed back to the ENT, where we were told to give drops of hydrogen peroxide in his ear for 2 weeks and then come back for a check of how things are going. If the tube is still clogged, Isaiah may need surgery to replace the tube(s). If not, we've bought some more time before needing another surgery....we'll keep you updated on how that check up goes!<br />
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Beyond the ear surprise, the trip was uneventful medically...thank goodness. ;-) We had lots of fun playing solo and playing with Isaiah's buddy Gavin! All that fun makes the trip fly by...<br />
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This dose of pamidronate really gave Isaiah a ton of energy. He typically sleeps his entire ride home, but this trip he was a chatter box. When we got home, I laid him in his crib for a nap, only to have him yelling "get up!" in minutes....it was a beautiful evening so we ventured outside to enjoy it. <br />
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Soon enough we'll be spreading out our breaks between Pam trips as Isaiah is soon THREE! (well not till August but when you're talking in terms of 8/10/12 weeks, that's pretty soon! We're scheduled to go in 10 weeks again but his next treatment in August just may be in 12 weeks! We'll see though, we have quite a bit happening then (more info on that soon) so it'll depend on that. :)<br />
<br />OIbelieveinIsaiahhttp://www.blogger.com/profile/01488751113716160019noreply@blogger.com0tag:blogger.com,1999:blog-5966872740801186324.post-24353978721935036322016-03-28T17:06:00.004-04:002016-03-28T17:06:39.022-04:00Easter 2016<div class="separator" style="clear: both;">
Goodness time is flying lately....I am so sorry for the continued breaks from the blog; life has taken over and is making it incredibly difficult to sit down and write even a quick post....but Isaiah is taking an unexpected late afternoon nap and I wanted to share how our Easter went!</div>
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Isaiah is at such a fun age (two and a half already, people!). All the extra holiday fun is just soon much fun! We enjoyed dying eggs with Isaiah this year, while he pointed out the colors and placed lots of stickers on his eggs...he was <i>very </i> specific as to where the stickers should go....</div>
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We had some fun leading up to Easter this year, painting and crafting! My kid, <i>the one who dry heaves at the smell of paint,</i> chose to paint a paper Easter egg....and enjoyed it!</div>
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I think there will be a clothesline hung in our house some time soon to display all of Isaiah's art projects that we'll do. I am hugely into crafts...but the absolute disgust that Isaiah showed to so much of it led me to put that creative bug on the back burner...I'm excited to see him want to color and paint now. :)</div>
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On Saturday, Isaiah got to spend some time with his Nan Nan and Aunt Tricia. Tricia, Isaiah's daddy, and I took care of the landscaping while Isaiah played with my childhood toys with him Nan Nan! He also got spoiled by them with a very special Easter basket of Tsum Tsums, mini M&Ms, and a Kion doll (Kion is a character from the Disney Junior show <i>The Lion Guard).</i></div>
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Sunday involved lots of time reflecting, going on a hunt for Isaiah's Easter basket, and more family time.</div>
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That sneaky Easter bunny <a href="http://oibelieveinisaiah.blogspot.com/2015/04/easter-2015-recap.html">always hides</a> Isaiah's Easter basket in the silliest places, and he always sends Isaiah on a hunt with plastic eggs filled with silly rhymes making him guess where to find his basket. This year, he put the basket <i>in the oven.</i> That silly rabbit, he's lucky I wasn't planning on baking anything for breakfast and needing to preheat that oven!</div>
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Isaiah was introduced to his first Peep this year...<br />
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and he's still undecided. LOL<br />
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All in all it was a great Easter for Isaiah. We hope you had a beautiful day as well!<br />
<a href="http://www.pinterest.com/pin/create/extension/?url=https%3A%2F%2Fwww.blogger.com%2Fblogger.g%3FblogID%3D5966872740801186324%23editor%2Ftarget%3Dpost%3BpostID%3D2435397872193503632%3BonPublishedMenu%3Dposts%3BonClosedMenu%3Dposts%3BpostNum%3D0%3Bsrc%3Dlink&media=https%3A%2F%2Flh3.googleusercontent.com%2F-rfW7U4XhOco%2FVvmYdF3fgPI%2FAAAAAAAAFfU%2FN2mJhxZgy3Q%2Fs640%2Fblogger-image-1792872487.jpg&xm=h&xv=sa1.37.01&xuid=8ABzEkWFFzBZ&description=" style="background-color: transparent; background-image: url(data:image/png; border: none; cursor: pointer; display: none; height: 20px; left: 113px; opacity: 0.85; position: absolute; top: 2858px; width: 40px; z-index: 8675309;"></a><a href="http://www.pinterest.com/pin/create/extension/?url=https%3A%2F%2Fwww.blogger.com%2Fblogger.g%3FblogID%3D5966872740801186324%23editor%2Ftarget%3Dpost%3BpostID%3D2435397872193503632%3BonPublishedMenu%3Dposts%3BonClosedMenu%3Dposts%3BpostNum%3D0%3Bsrc%3Dlink&media=https%3A%2F%2Flh3.googleusercontent.com%2F-rfW7U4XhOco%2FVvmYdF3fgPI%2FAAAAAAAAFfU%2FN2mJhxZgy3Q%2Fs640%2Fblogger-image-1792872487.jpg&xm=h&xv=sa1.37.01&xuid=8ABzEkWFFzBZ&description=" style="background-color: transparent; background-image: url(data:image/png; border: none; cursor: pointer; display: none; height: 20px; left: 113px; opacity: 0.85; position: absolute; top: 2858px; width: 40px; z-index: 8675309;"></a>OIbelieveinIsaiahhttp://www.blogger.com/profile/01488751113716160019noreply@blogger.com0tag:blogger.com,1999:blog-5966872740801186324.post-15030627301626937532016-02-18T09:23:00.002-05:002016-02-18T09:24:55.788-05:00Please Touch Museum<div class="separator" style="clear: both;">
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I can't believe this was a month ago, but back in January, we ventured to Philadelphia to visit the <a href="http://www.pleasetouchmuseum.org/">Please Touch Museum</a> for a special event called <i>Play Without Boundaries. </i></div>
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<i>Play Without Boundaries</i> provides families of children with disabilities the chance to play at the museum without crowds (as it opened before typical hours just for those who signed up for the event), without the music playing, and the lights turned low....for free. <br />
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We were lucky enough to meet our cousins there and got to have a tea party with one of them <3</div>
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<i>"Helena, would you like a spot of tea?"</i></div>
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Isaiah had a TON of fun pretending throughout the day...buying a sandwich from some guy at the park (that's daddy;-) ) driving an ambulance, working at a train station....so much fun!<br />
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The best part of the day was playing on the accesible sail boat!<br />
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He really lit up when it would move. We could have probably spent the whole day there. :)<br />
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<a href="https://www.instagram.com/p/BAYBOaPSF7M/" style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none;" target="_blank">A video posted by Vicky (@oibelieveinisaiah)</a> on <time datetime="2016-01-10T22:28:43+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Jan 10, 2016 at 2:28pm PST</time></div>
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Isaiah also got to ride his very first carousel. Twice!<br />
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He didn't actually ride on a horse as Daddy was very nervous about that idea, so instead we snapped that picture and hopped on the bench nearby. ;-)<br />
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It was a wonderful morning playing without boundaries! The lack of crowds was a HUGE draw for us because it meant less people for Isaiah to bump into and less kids who were excited by Isaiah's chair and wanting to touch it. :) The Please Touch Museum has this event four times a year...and we'll be watching for the next one. :)<br />
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In mid-January, we had our most recent pamidronate treatment. Isaiah and I were lucky enough to have daddy come along!</div>
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The first day is always busiest since the nurses need to weigh Isaiah, get his port accessed, get blood work, etc...but he handled it all like such a champ this time! Even after waking up <i>ridiculously</i> early...</div>
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Once his Pam was flowing, we saw Dr B and his PA, gave them the run down of everything, and entertained ourselves with our buddy Gavin and his dad. <br />
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Once we were finished at the hospital, we spent time napping in our room at the Ronald McDonald House (fun fact: they just finished renovations and we got to stay in a new room! Funner fact (I know funner isn't a word but it just flows, ok?): We stayed in the same room that Dave and I stayed in when Isaiah was first born and transferred to DuPont after he was born.)<br />
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and by napping, I mean I got to nap while Dave and Isaiah cuddled and played on the iPad because WHO NEEDS SLEEP? <i>Not this crazy two year old.</i><br />
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We "rested" and had fun in one of the play rooms at RMH until it was dinner time and it was there that Isaiah rode this way cool rocking horse!!</div>
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I've eye-balled that thing every trip, but was always too intimidated to put him in...but with Dave's help, we successfully got him in and he loved rocking and yelling "giddy up!") ...and I even put him in again the next day by myself! Woot woot!<br />
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After dinner, Isaiah was worn out (thank goodness...), and slept like a rock. Day 2 of Pam (Isaiah's infusions last a few hours a day for 3 days) went off without a hitch. We actually made record timing and were out of the hospital before noon that day! (Seriously, it was a record.)<br />
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We had lunch over at the House...<br />
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And then treated ourselves to dinner out at TGI Fridays (yay gift card!). Isaiah was so cute at dinner, playing happily with his Captain Hook toys....acting things out, saying "tick tock tick tock..." <br />
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Showing us that he is really growing up!<br />
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After dinner, we cleaned up our room and got it ready so that we could check out of the McDonald House in the morning before headed up bright and early to the hospital and then it was time for the last day of Pam!<br />
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Isaiah spent time playing with his toys, had an echocardiogram done to check his heart (still waiting on the results but the tech saw no abnormalities...woo hoo!), and before we knew it, the morning was over, they were de-accessing his port, and we were out the door and on our way HOME.<br />
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The next few days required a certain someone to catch up on sleep.....even in the grocery store. haha :)<br />
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This week we've been dealing with a suspected tibia (lower leg) fracture. His doctors know and we're caring for it at home thus far, splinted and giving medicines prescribed by his OI docs....the nights have been tough but his days are happy. We're hoping to avoid X-rays on this one and praying for continued healing. <3<br />
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Oh, and Mr Isaiah turned two and a half yesterday! I can't believe it's only 6 months until he turns 3! Time sure flies when you're a parent...<br />
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Happy Valentine's Day! <3OIbelieveinIsaiahhttp://www.blogger.com/profile/01488751113716160019noreply@blogger.com0tag:blogger.com,1999:blog-5966872740801186324.post-76956985283871463602016-02-01T06:30:00.000-05:002016-02-01T06:30:06.551-05:00Hi There!<div class="separator" style="clear: both; text-align: left;">
Sorry for the radio silence on the blog...I hope you haven't totally given up on me! We're doing well and Isaiah is doing great! We just had another round of Pamidronate last week. Isaiah has been battling a very ugly ear infection that we finally turned a corner on over the weekend...thank goodness for an effective antibiotic!</div>
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He's smiled and laughed through it all during the day...and we're grateful. (The nights have been another story!)</div>
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I had an unofficial new years resolution to get my butt back to blogging regularly but clearly I couldn't keep up with that...even through the first week of January? Lordy! So I am going to shoot for one post a week and see if I can keep up with that. :) If you'd like to see Isaiah more, I do post frequently on our public <a href="http://instagram.com/oibelieveinisaiah">instagram</a>/<a href="http://www.facebook.com/oibelieveinisaiah">facebook</a> pages. :)</div>
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I have some posts started on our adventures at DuPont for pamidronate (and a shunt check that happened right before Christmas) and The Please Touch Museum (so much fun!), and playing in the snow so hopefully I can get them written and shared with you...so many cute pictures! </div>
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We hope 2016 is treating you well! :)</div>
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OIbelieveinIsaiahhttp://www.blogger.com/profile/01488751113716160019noreply@blogger.com0tag:blogger.com,1999:blog-5966872740801186324.post-47703012548109380052016-01-06T07:00:00.000-05:002016-01-06T07:00:35.818-05:00PT Fun<div class="separator" style="clear: both; text-align: left;">
Isaiah has come a long way in terms of his physical therapy. Lately our focus has been on two things: head/torso control and reaching.</div>
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Isaiah can be a stubborn boy sometimes...not sure where he gets that from.... :-P but he's especially stubborn with tummy time. We had a system of working on it on an incline on the floor but he refuses to lift or hold his head up...</div>
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But he will keep his head up when on me or on an exercise ball so that's what we've been focusing on. We spent every day for about 3 weeks (then the holidays happened and we took an unintentional break. whoopsie. Back to it today!) spending some time on the ball, and quickly learned that he will work for Disney Junior. </div>
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We've heard every song from his new obsession, <i><a href="https://www.youtube.com/watch?v=05ViXbWpHoY">The Lion Guard</a>,</i> more times than I care for, but if it keeps him inspired to hold himself up, bear weight on his arms, and enjoy it...well, I'll listen to it 500 times a day if I have to. </div>
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Isaiah's PT has also given us a great tip to pause the video when he needs to rest, as that pause pushes him to keep himself going (because he wants to watch and sing along).<br />
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Isaiah is tolerating 5 minutes of tummy time without a break, holding his head up the entire time, and that's a huge win for us. He's even rolling over onto his belly more when not working on tummy time, choosing it because it's comfy, but we just need to figure out how to get him to get the confidence to put his head up when not on the ball or on us and he'll be golden!<br />
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The other skill we're having fun mastering is reaching...reaching to the point of getting him to lift a cheek off the ground.<br />
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We're hoping this will strengthen his core and get him on the way to "scooting" around independently.<br />
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He is so insanely inspire by everything Lion Guard....so do me a favor and don't tell him this toy is from Lion King haha.<br />
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We just had a two week break from all things therapy thanks to the holidays....although we enjoyed the break, it'll be nice to get back into the swing of things with Isaiah's physical therapist, occupational therapist, and speech therapist this week. We're excited for more ideas to continue to implement into our daily routines. :)OIbelieveinIsaiahhttp://www.blogger.com/profile/01488751113716160019noreply@blogger.com0