tag:blogger.com,1999:blog-27758338117132412292024-02-07T06:49:35.908-05:00Our Journey With One of God's Miracles"We thought we'd have to teach our son about the world. Turns out we have to teach the world about our son. They see a boy who cannot speak. We see a miracle who doesn't need words." -unknownSusanhttp://www.blogger.com/profile/11467411170536465859noreply@blogger.comBlogger592125tag:blogger.com,1999:blog-2775833811713241229.post-17395529482089054652019-06-21T19:38:00.000-04:002019-06-27T19:39:34.790-04:00Plumonary Checkup<div class="separator" style="clear: both; text-align: center;">
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Noah's checkup with his pulmonologist went really well. The only issue we are dealing with is Noah has once again lost weight. His little body was working so hard to breath that he burned off more calories than he was taking in while he was sick last month. We have made some changes and hopefully he will gain the weight back as quickly as it came off. </div>
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I love how attentive Boris is when Noah is at his appointments. Boris will lick Noah's hands to distract him when the nurses or doctors are accessing him. For the first time Noah was able to have some blood drawn with out having 2 people hold his arm. I'm so glad we have Boris to be there for Noah.</div>
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Susanhttp://www.blogger.com/profile/11467411170536465859noreply@blogger.com2tag:blogger.com,1999:blog-2775833811713241229.post-532021018905176172019-06-14T20:15:00.000-04:002019-06-27T20:25:54.372-04:00A Day at the Park<div class="separator" style="clear: both; text-align: center;">
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Noah had a great day at the park. I'm so excited to see swings that Noah can swing in right along side of his friends.</div>
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What a fun day we had playing with Liam. </div>
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The cutest service dog ever!!!!</div>
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The park even has a swing for Mommy and baby.</div>
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Liam says, "Done"</div>
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<br />Susanhttp://www.blogger.com/profile/11467411170536465859noreply@blogger.com1tag:blogger.com,1999:blog-2775833811713241229.post-12142372564455159822019-06-07T19:54:00.000-04:002019-06-27T19:55:01.920-04:00Little Buckeye Museum<div class="separator" style="clear: both; text-align: center;">
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We had a fun day exploring the Little Buckeye Museum with Liam and Morgan.</div>
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Noah really enjoyed watching Liam play and explore.</div>
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Liam and Noah had fun putting on a show and dancing for Morgan and I.</div>
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Last minute playtime with Mr. Potato head before we were done for the day.</div>
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Susanhttp://www.blogger.com/profile/11467411170536465859noreply@blogger.com1tag:blogger.com,1999:blog-2775833811713241229.post-42775542291003262732019-05-25T19:13:00.000-04:002019-06-13T15:51:45.271-04:00Finally A New Chair<div class="separator" style="clear: both; text-align: center;">
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After a 2 year fight for a new wheelchair, Noah got discharged from the hospital at 2pm on Friday and we headed to Millers because we weren't leaving Cleveland without his new chair!!!</div>
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They sat Noah in his new chair and figured out what needed to be changed and tweaked to fit him better. </div>
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Noah was able to take a quick break while he waited for them to make changes.</div>
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Then back in his chair to make the final adjustments.</div>
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The physical therapist that worked with us noticed how much better he sat up from the last time she saw him. I told her again that we do <a href="http://www.abramericas.com/" target="_blank">ABR</a>. Thanks ABR, Noah wouldn't be where he is without you. </div>
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We are happy to say, it's the best chair he has ever had.</div>
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<br />Susanhttp://www.blogger.com/profile/11467411170536465859noreply@blogger.com2tag:blogger.com,1999:blog-2775833811713241229.post-84258398610280394002019-05-24T18:02:00.000-04:002019-06-05T19:01:44.457-04:00Our Healthy Streak Ended<div class="separator" style="clear: both; text-align: center;">
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On Monday Noah had been sick for about a week and I decided it was time to get him checked out. Instead of calling his pediatrician I made an appointment with his pulmonologist. On Wednesday my Mom, Liam, Noah and I headed to Twinsburg to see Dr. Hart.</div>
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I thought it would be a quick check in with the doctor and get some antibiotic and be on our way. Unfortunately, his chest was retracting and his pulse ox was 86. </div>
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This little guy was the best baby. He was well taken care of the nurses. One even made him some macaroni and cheese for his lunch.</div>
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Liam had fun and occupied himself with anything he could find.</div>
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It was so hard but I sent Noah in the ambulance by himself and met him at the Main campus.</div>
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I think Liam was calling his Mom and telling her to come quick he was running out of things to do in Uncle Noah's room. </div>
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Grandma, my Mom just told me that I have another 3 hours in this place...….</div>
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Finally after taking a walk to see the fish, Mommy and Daddy came to get me.</div>
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After a night of breathing treatments, steroids and antibiotics, Noah had gotten a little bit of rest and doing so much better. Goal of the for the day was to get out of the ICU and move to a regular room, and continue to improve so he could be discharged on Friday.</div>
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I think he is saying, Get me out of here!!!!</div>
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He is such a Goober. It was determined through blood work that Noah had Parainfluenza 3. Yeah I have never heard of this one either. He started at 15L. of oxygen and worked himself down to 1 liter by Thursday morning. </div>
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By Thursday evening Noah had weaned himself of oxygen and continued to stat at 95 all night.</div>
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His biggest problem while being in the hospital is being able to rest for any amount of time. When the doctors were doing their rounds on Friday I convinced them that Noah would rest and heal better at home. They weren't doing anything for Noah that I couldn't do at home, so they discharged him.</div>
Susanhttp://www.blogger.com/profile/11467411170536465859noreply@blogger.com0tag:blogger.com,1999:blog-2775833811713241229.post-46826932229821364692019-05-11T17:29:00.000-04:002019-06-05T15:28:36.543-04:00Nurse Appreciation Month<div class="separator" style="clear: both; text-align: center;">
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We would like to thank all the nurses that have taken care of Noah. From the ER to his PICU stays. You have all showed so much compassion and took such great care of Noah. But there's one particular nurse who needs to be singled out here: Deanie Kehres.<br />
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<span style="background-color: white; color: black; display: inline; float: none; font-family: "times new roman"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; text-align: center; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">Three years ago Scott and I </span> were needing time to reconnect as a couple and looking for someone willing to keep Noah once a month so we could get away by ourselves. What we ended up with was not only that, but new friends for life. Deanie Kehres, mother of two of Noah's favorite basketball Whippets, responded to our plea almost immediately. She's a nurse, and she already knew Noah from the basketball games, so we felt safe leaving Noah with her. For most months since, Scott and I have taken Noah to the Kehres house--usually a Saturday--and left Noah there with Deanie and her family. We'd then pick a direction and go that way and see what we found. We were usually gone for 8 hours or so.</div>
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From finding time in both family's schedules for a Saturday that worked to having our day trips ruined by Scott's mandatory overtime, we've gotten away quite a bit. Scott and I enjoy our time away and we've found some interesting places to go, like the Neil Armstrong Museum in Wapakoneta, and the Marblehead Lighthouse, among others. </div>
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And through it all, Deanie, her husband Todd, and sons Tristan and Brock, have all bonded with Noah (and us) and become the respite care Noah needed and the friends that Scott and I needed. From getting past the initial experiences of feeding Noah and changing his diapers--both poopy blowouts and geysers erupting--to reading Noah's facial expressions and decoding his body language, Deanie and the others have come to know Noah practically as well as we do. Noah has spent time with Todd going over game video or just watching sports on TV, and has spent time with them out at their camper at KOA, to hanging out with Brock watching March Madness. </div>
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There was also that one LifeFlight trip where Susan was 5 pounds too heavy for the trip, so Todd went with Noah so he could be Noah's voice until Deanie drove Susan up to the Cleveland Clinic. <br />
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There are no words of thanks that feel adequate to the gratitude Scott and I have for the Kehres family. They've become part of our extended family too. We love and appreciate them so much for their time and support while Scott and I have reconnected as a couple and become each others best friends again. </div>
<br />Susanhttp://www.blogger.com/profile/11467411170536465859noreply@blogger.com0tag:blogger.com,1999:blog-2775833811713241229.post-84215143766124704942019-04-08T10:42:00.000-04:002019-04-08T10:42:20.141-04:00Happy 30th Anniversary Scott<div class="separator" style="clear: both; text-align: center;">
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The last 30 years has been one crazy ride. We have had our extreme ups and downs. Somedays it hasn't been easy but I'm so glad I've had you by my side through it all. I love you so much and can't imagine life without you.</div>
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Susanhttp://www.blogger.com/profile/11467411170536465859noreply@blogger.com0tag:blogger.com,1999:blog-2775833811713241229.post-38665467825552155122019-03-09T11:03:00.000-05:002019-03-09T11:03:51.857-05:00Let's Talk Poop......<img alt="Image may contain: 1 person" height="640" src="https://scontent-ort2-2.xx.fbcdn.net/v/t1.0-9/53751051_10215369870292301_3996681357731299328_n.jpg?_nc_cat=102&_nc_ht=scontent-ort2-2.xx&oh=894b5c50c72bf63a48ecf9ce2765b66f&oe=5D175F9D" width="480" /><br />
Let's talk poop.......<br />
Sorry Noah, he always hates when Deanie and I talk about if he has gone or not when he spends time with her and Todd on Noah/Kehres Day. But the last several months I've been at my wits end with Noah's bowels. He was either constipated or having blowouts on only 1/8 of a cap of Miralax. Which lead to not letting him enjoy one of his favorite things, swimming. He hasn't been himself in quite some time. He hasn't slept well and most importantly he hasn't smiled much. It has just broken my heart watching him, I had to find something to help him. I started researching the re-flux medicine he was on and this is what I found: dizziness,feeling jittery,diarrhea,stomach pain,nausea,constipation and headache. I can almost bet Noah has dealt with all of these for months. My poor little man......<br />
I made an appointment his gastrologist and decided to stop giving him his re-flux medicine to see if it would help him feel better. Guess what? We started seeing his smile again!!! I started giving him some Melatonin to help him sleep better. He seems more awake and alert during the day so I believe it is helping. On Tuesday he saw his GI doctor and we had a good talk about Noah's issues. We decided together that Noah doesn't need the reflux medicine since he hasn't gagged or retched being off of it the last 2 weeks and instead of Miralax I'm giving him 1T. of Benafiber. I'm to say that it was what he needed. Noah just might be able to go swimming soon. Notice above I said "we" It feels so good to feel like we are part of a team and that I'm being respected as Noah's Mom. The doctors that we have been with since last May are wonderful. I'm sure glad I wiped the slate clean and started new.<br />
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Some of you might be wondering how Boris is doing..... he has been wonderful. He does his job so well. He knows when Noah needs a little extra attention, he will lick Noah's hands to redirect him when he is feeling stressed or anxious. He is so good on Noah's lap we are asked if he is stuffed. Boris is a great addition to our family.<br />
<br />Susanhttp://www.blogger.com/profile/11467411170536465859noreply@blogger.com0tag:blogger.com,1999:blog-2775833811713241229.post-66485132032723978962019-01-30T14:41:00.000-05:002019-05-09T14:43:15.230-04:00ABR January 2019<div class="separator" style="clear: both; text-align: center;">
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ABR training went really well. Noah is so much better now when we are attending our training. He used to cry a lot, now he just so patient and takes it all in.</div>
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We learned some exercises to work on his shoulder blades and core.</div>
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Noah hates staying at hotels. He stays up all night and wants to sleep during the day. He sure looks peaceful though. </div>
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One of the many changes we have seen this time is Noah finally has a jawline and neck. </div>
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Susanhttp://www.blogger.com/profile/11467411170536465859noreply@blogger.com0tag:blogger.com,1999:blog-2775833811713241229.post-40228695083376253962018-12-11T18:36:00.000-05:002018-12-11T19:09:40.928-05:00Keep Us in Your Prayers<br />
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The last several months Noah has had appointments for his cochlear implant. He has had many test done and an MRI. His audiologist and ENT doctor has concluded that over half of his implant is not working.<br />
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Tomorrow we have to be at the Cleveland Clinic at 8:30a and his surgery will be at 10am to replace his implant. We're hoping this will allow him to have better quality of hearing.<br />
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Please keep this little guy and us in your prayers tomorrow. Our whole family's anxiety is off the charts after almost losing him in April.</div>
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Susanhttp://www.blogger.com/profile/11467411170536465859noreply@blogger.com0tag:blogger.com,1999:blog-2775833811713241229.post-38859433424360114102018-11-17T10:50:00.000-05:002019-04-08T10:53:08.242-04:00Boris/Max<br />
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Not sure Boris enjoyed it but Noah thought Boris as Max was hilarious. </div>
Susanhttp://www.blogger.com/profile/11467411170536465859noreply@blogger.com0tag:blogger.com,1999:blog-2775833811713241229.post-48634963592338021362018-10-31T18:35:00.000-04:002019-04-11T18:36:19.822-04:00Halloween 2018<br />
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Noah was Andy and Boris was Woody.<br />
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Liam was a little stinker butt.<br />
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Susanhttp://www.blogger.com/profile/11467411170536465859noreply@blogger.com0tag:blogger.com,1999:blog-2775833811713241229.post-15075166712476649232018-10-06T10:59:00.000-04:002019-04-08T11:01:08.332-04:00Dog Park<br />
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We were so excited to find out the Shelby had a dog park. It was fun to take Boris and Bela there to run.<br />
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Susanhttp://www.blogger.com/profile/11467411170536465859noreply@blogger.com0tag:blogger.com,1999:blog-2775833811713241229.post-90124454621659658432018-09-22T18:37:00.000-04:002019-04-11T18:41:05.609-04:00The Bond<br />
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I love to watch Liam interact with Noah. He looks up to Noah and loves him so.</div>
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Susanhttp://www.blogger.com/profile/11467411170536465859noreply@blogger.com0tag:blogger.com,1999:blog-2775833811713241229.post-6383390077721723682018-09-15T17:29:00.001-04:002018-09-15T17:29:21.939-04:00Strut Your Mutt<br />
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Noah and fun Strutting is Mutt at the Richland County Fairgrounds today. Noah found a tie for Boris. Now they are ready for the game together. I was very impressed with Boris today, there was a lot of dogs and he was very excited to see all them but he didn't bark.<br />
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Dale, Boris' trainer was very appreciative and happy that we stopped by to see him. Dale has a Facebook page Pound to Service Dog, go check it out.<br />
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Noah also won one of their raffles. Too bad he isn't old enough to enjoy it. Time for some wine tasting ; )</div>
Susanhttp://www.blogger.com/profile/11467411170536465859noreply@blogger.com0tag:blogger.com,1999:blog-2775833811713241229.post-60269982878144715142018-09-11T15:43:00.001-04:002018-09-11T15:46:02.553-04:00Surgery On the Horizon<br />
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Yesterday Noah had an appointment with his ENT. Only half of Noah's electrodes in his cochlear implant are working. That might explain why Noah has been taking his "ear" off. It must not be sounding right to him. Maybe it hurts? Who knows...` The Cochlear Implant team feel that it has gone bad because of Noah banging his head on his headrest. Something that he does when he gets stressed out or anxious. Noah has been on anxiety medicine since May and it has done wonders for him. Boris has also played a big part in keeping Noah calm during his day and when he goes to his many appointments. With that being said it is time to replace his implant. The surgery will take place as soon as it can be scheduled. </div>
Susanhttp://www.blogger.com/profile/11467411170536465859noreply@blogger.com0tag:blogger.com,1999:blog-2775833811713241229.post-51230323276225537812018-09-08T14:58:00.000-04:002018-09-11T15:24:03.820-04:00Help Us Help Noah<br />
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Noah saw his pulmonologist on Friday. She was very pleased with the way Noah's lungs sound. She feels the changes we have made in the last few months have been doing its job. We also talked about what to do to keep Noah healthy through the fall and winter. Noah was diagnosed with rhinovirus when he last in the hospital. With that being said, what is the next few months going to be like? It seems like the germs are ramped up already this year. We need to keep Noah away from germs as best we can and we are asking you to help us. It wouldn't be fair to Noah to completely put him in a bubble and not get out of the house to do things he loves to do. Here is where you can help: if you see us at church, a sporting event or anywhere else enjoying life, please don't hesitate to say hi to Noah but please don't touch him. If you aren't feeling well please refrain from stopping by or getting too close to Noah. Help Us Help Noah</div>
Susanhttp://www.blogger.com/profile/11467411170536465859noreply@blogger.com0tag:blogger.com,1999:blog-2775833811713241229.post-7757835828472460112018-09-05T18:42:00.000-04:002019-04-11T18:55:55.070-04:00It Came On So Quick<br />
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On Sunday we went to the zoo. The longer we stayed the warmer Noah felt.<br />
We ended up taking Noah to the ER to get him checked out. He tested positive for Rhino virus.<br />
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Noah was transferred to the Cleveland Clinic via ambulance.<br />
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He was in patient until Tuesday.<br />
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Boris always makes him feel better.0<br />
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Susanhttp://www.blogger.com/profile/11467411170536465859noreply@blogger.com0tag:blogger.com,1999:blog-2775833811713241229.post-57763930114502650462018-08-31T18:56:00.000-04:002019-04-11T19:00:08.346-04:00Shelby Football 2018<br />
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It's always good to get out of the house and enjoy some Shelby football. Boris did wonderful with all the extra noise. He is such a good fit for Noah.<br />
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Susanhttp://www.blogger.com/profile/11467411170536465859noreply@blogger.com0tag:blogger.com,1999:blog-2775833811713241229.post-77305370542059023942018-08-20T20:12:00.000-04:002018-08-20T20:50:55.605-04:00Noah Physical<br />
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Noah had a great check up with his primary doctor. He was very impressed with Noah. He asked me if we do physical therapy with Noah. I told him no we have been doing ABR therapy for over 10 years. He told me to keep doing what I'm doing and keep up the great work.<br />
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By the way Liam was the best helper at Uncle Noah's appointment today.</div>
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When we got home I called Noah's nutritionist to discuss Noah's food intake. We both agreed that it was time to just have Noah maintain his weight since his BMI is now on the good range. It's hard to believe we have finally made it to the other side with Noah's weight.</div>
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Susanhttp://www.blogger.com/profile/11467411170536465859noreply@blogger.com0tag:blogger.com,1999:blog-2775833811713241229.post-38712588203967490462018-08-17T20:22:00.000-04:002018-08-20T20:35:38.485-04:00Today is the Day<br />
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Noah's appointment with his pulmonologist went really well. We got his breathing medications changed to inhalers. Noah doesn't do well with getting them through his nebulizer. The inhalers will be so much easier. Noah is also at his all time high of 77lbs 13.2oz. </div>
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I have always wanted to take Noah to an Indians game after leaving the Cleveland Clinic. Today was the day!!!! We decided to ride the train to the game. Noah was a bit concerned with the train ride. I kept telling him I promise we will get to the game.<br />
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We had a great time and Boris did wonderful.<br />
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Noah was so glad the Indians won 2-1.</div>
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Susanhttp://www.blogger.com/profile/11467411170536465859noreply@blogger.com0tag:blogger.com,1999:blog-2775833811713241229.post-36287863630185247252018-08-12T09:51:00.000-04:002019-04-08T09:57:53.077-04:00Our Time in Rehoboth Delaware<br />
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What a great way to end the summer. We went to Rehoboth Delaware to visit Scott's sister.<br />
Noah, Emily and I had a great time. I enjoyed seeing Noah put his feet in the ocean again.<br />
We would like to thank Kim and Karen for being such great hostess. We loved spending time with you.<br />
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After the spring we had with Noah, sitting beside him watching the waves rush over his feet brought tears to my eyes. I couldn't imagine my life without Noah in it.<br />
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Looking forward to returning to the ocean. It's definitely my happy place </div>
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Susanhttp://www.blogger.com/profile/11467411170536465859noreply@blogger.com0tag:blogger.com,1999:blog-2775833811713241229.post-53491977389335594122018-08-10T19:05:00.000-04:002019-04-11T19:05:42.394-04:00Richland County Fair 2018<br />
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Noah and Elijah enjoyed a day at the fair and to see Liam reaction to all the animals was priceless.<br />
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Susanhttp://www.blogger.com/profile/11467411170536465859noreply@blogger.com0tag:blogger.com,1999:blog-2775833811713241229.post-78659357516695119072018-07-20T19:12:00.000-04:002019-04-11T19:13:14.716-04:00Such A Great Dog<div class="separator" style="clear: both;">
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I love the bond Noah and Boris have. Boris loves to do what Noah does. </div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPoLCAn953UHqQJGTTDJFgFzqn5FUCsZxZaiJEIi2VxhC4ZXQltgGn4_4yBOWLlCcHwgMb9-0shcd0YikeSi7wkw67JKzP-jxenAWS1Hx73fuWXttAI7YhwgiQmZFZ2_g4RcW6djWVbOh9/s1600/blogger-image-981560630.jpg" imageanchor="1"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPoLCAn953UHqQJGTTDJFgFzqn5FUCsZxZaiJEIi2VxhC4ZXQltgGn4_4yBOWLlCcHwgMb9-0shcd0YikeSi7wkw67JKzP-jxenAWS1Hx73fuWXttAI7YhwgiQmZFZ2_g4RcW6djWVbOh9/s640/blogger-image-981560630.jpg" /></a>Susanhttp://www.blogger.com/profile/11467411170536465859noreply@blogger.com0tag:blogger.com,1999:blog-2775833811713241229.post-65669578191340467032018-07-17T21:35:00.000-04:002018-12-06T21:45:15.949-05:00ABR Training July 2018<div class="separator" style="clear: both;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVw3dssHj3we5x-quefnmo_nkaB8WrOyp-XQ0bQKc2SDj2rqujp86EUg-V3hTfqfpIVJfTgllrR_zrlG7Y_IXcSMVZgrhx3ratU34kTGABmhyphenhyphenjTZdIj4SLDug-3zZLtDoPBpt4ZsTrnPdZ/s640/blogger-image--2089276624.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVw3dssHj3we5x-quefnmo_nkaB8WrOyp-XQ0bQKc2SDj2rqujp86EUg-V3hTfqfpIVJfTgllrR_zrlG7Y_IXcSMVZgrhx3ratU34kTGABmhyphenhyphenjTZdIj4SLDug-3zZLtDoPBpt4ZsTrnPdZ/s640/blogger-image--2089276624.jpg" /></a></div>
Our ABR training went really well. It was good to learn some new techniques and connect with some other families.<br />
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It was Boris' first ABR trip. He did a great job learning what he needed to do to help Noah.<br />
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Noah was more relaxed during training with Boris being there.<br />
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Noah is getting his legs wrapped. This will help with his tense muscles in his quads.<br />
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Susanhttp://www.blogger.com/profile/11467411170536465859noreply@blogger.com0