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St Patty’s Day

5 years ago on St Patty’s day, I would have been enjoying a green beer in Westport with my sisters. I love to go to Westport on this day! What I wouldn’t give for a green beer at Kelly’s. But fast forward to almost 5 years and that just isn’t our reality! Instead I spent it at home with all of our kids, who all have a cold and wiped and sprayed my house 100 times praying Bo doesn’t get any sicker. Who would have thought that this was our reality?!? It’s amazing how times have changed! So we have been back from our trip,for a month and I can’t even tell you how amazing our time was at Give Kids The World, It was truly unbelievable!
We have our agenda for NIH, we leave April 27th and come home on the 29th. Everyone knows I’m a freak about schedules, we have a schedule… We have to be at NIH at 6:30 am Monday April 28 where we will check in, get blood work, he will have a CT scan of his chest and abdomen. I’m super excited about that because they can compare his November CT scan where he had 6 new granulomas in his lungs. We will then have an LP( lumbar puncture) spinal tap what ever you want to call it. We will meet with 1 dr at 1:30, more blood work then meet with a dr at 2:30. Then have an X-ray of his tummy. We will then wrap it up with 3 dr meeting with me, Bo and John. To go over what we have. This Dr at NIH has had Bo’s medical records for over 2 months and he has gone through them with a fine tooth comb, I think that’s what I’m most excited about! He is putting in hundreds of hours trying to figure Bo out, as is his colleagues! 3 hospitals, 3 different states in 3 years!! This has to be our answer, our hope, we’re so close! We have been told this isn’t a 1 time trip, we’re talking several several trips to NIH. Where do we stand for now,Bo has been sick for a few weeks, spent last week in the hospital he still isn’t 100%. But he defiantly has more energy then he did, he gets IVIG Sunday so that will help! He also gets his hearing aids on Monday! This is going to be a learning experience for all of us. With all of the medication he is on his hearing has taken a hit, it wasn’t 100% from being such a small premie, so with the help of high dose antibiotic it just made it worse. He pretty much can’t hear you if your talking behind him, so we have all gotten used to that and talking to him from the front! He is also getting something called DEXCOM… I have never been more excited in my life for something then I am for this!! So.. What is it?? It is a small pod that will stay on his body like his belly or back side, it’s a continuous glucose monitor!!!! Which means I can pull out the meter that comes with it and it will tell me what his Blood sugar is!! Holy crap!!!!! Bo has been diabetic since he was 9 months old! I check his blood sugar(we) check his blood sugar anywhere from 8-10 times a day. Because he just can’t tell me he isn’t feeling great because he is high or low! I can usually tell by his body language or if he is flush or sweaty. For the past 3 years I check his blood sugar at 1:30 am EVERY SINGLE NIGHT! Mostly for my piece of mind since he has a pump! Now I won’t have too, I will just be able,to push a button and it will tell me where he is. Then it will alert me if he is high or low!!!! Wtf!!!?!?!? I’m so excited about it!! You have no idea how excited I am for this! I’m excited and nervous to go to NIH, I’m so ready yet I’m terrified. These people deal with the rarest of rare diseases and we already know Bo is super rare!!:) I have to remember that these will be 4 long years of questions, I hope and pray they have our answers they will be our lifesaver! I keep praying that the next day will be nice and he can go outside and enjoy some fresh air, here’s to hoping tomorrow is at least 60.


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Day 5.

We started our day with a visit with Woody woodpecker and his wife!:) the kids thought they were so funny! Bo was still really tired today so John and I and the big kids headed to Universal studios for the day! Papa Jay held Dow. The fort here! Thank god for him! Bo took a 3 hr nap, he is still so,tired! They played hard today though, there is so much to do here it’s so nice! Brookie got to go to the spa this evening and got her nails done and s few tattoos! Tonight we had the pirate and princess part at the Avenue of angles! So much fun! We’re exhausted in a good way, and sad tomorrow is day 6. Thanks for checking in on our little super hero!





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Day 4…

Today we got up early, because the Disney characters were coming! We made our way to the village to the theater and there he was MICKEY… We had talked about this moment forever!! I’m not sure who was more excited, me or Bo. Even Leksi and Johnny were excited for Bo. The amazing part was it was private just us and Mickey and 7 volunteers who took our cameras so we could be in the picture! Bo walked straight to Mickey and told him he loved him! I instantly started crying and it wouldn’t stop. One of the nice volunteers came over gave me a Kleenex and hugged me and told me what an amazing job I was doing, and Bo was lucky to have me as his mommy! Them I cried harder! I cry now just typing that! The one thing Bo watches is Mickey Mouse club house and started watching it last year in the hospital, to actually get to see him meet Mickey is something I honestly wasn’t sure would ever happen. Last year was such a hard year on us with Bo, with his healthy! These last 4 days that has all gone away, there is no hospital, no needles, nothing! To see him Run and play and interact with Leksi, Johnny and Brookie is the best thing that could happen for me for this entire year! I will always have this memory it’s simply amazing!! So today after we met Mickey we plays for a while, it was a little,chilly today. We decided it was in Bo best interest to sat here. So leksi and I did a little shoppingand just hung out. at 6 we went to dinner, them it was Christmas time in the village!! It was spectacular all day the played Xmas music, Mrs Clause greeted us for dinner. Then we headed to see Santa. Where he gave all of the kids gifts, good gifts. Brookie got a baby Alive , Bo go mr potato head and Johnny a basketball thing, our wonderful sissy was so generous and decided, it would be best if we have 2′baby alive, which she was right the second we walked in Bo wanted a baby! Good thing that sissy is so smart! We then watched the parade and headed back. We’re all tired, but a good tired! Tomorrow were going to,universal studios, were excited about that.
Pray for,the rest of our trip to be smooth sailing!












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Day 3…

We got up early today so we could ride the horses, we rode at 8 am since we had to meet lightning McQueen at 10:15 at Hollywood studios! Bo and Brookie loved it, even Johnny got to ride! It was perfect weather again 80 degrees! Today we headed to Hollywood Studios, it was great they had some really cool rides. We also got the privilege to spend the entire day with our dear friends Kristen and Chris, and there 3 amazing children. I’m sure some of you have heard me talk about Demirti who Brooklynn adores, I mean she talked about him non stop! So she was super excited to spend the day with us, they even came back to give kids the world to see first hand how Amazing it I was! Bo was pretty tired today, which is wasn’t surprised at all, he has been non stop the past 2 days, he fell asleep around 1:00 and slept until we got back all the way until 6:00 this evening! The. We had a small thunder storm and when it was finished we are and made pillows and Bo got to make a wish on his star. It’s been another magical day here, even more so since we got to spend it with our friends who we miss like crazy! Thank you.










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Day 2…

We were up an datum this morning, after a very delish breakfast we headed to Magic Kingdom. It was a beautiful 80 degrees here. It was so so surreal to me to watch Bo be a boy! Playing and running with his brother and sisters. It was something. I haven’t seen, ever! I have NEVER seen Bo so happy, I’m not just saying that because were at the most magical place on earth! It truly is like he is taking all of this in. We got back to GKTW at 5:00, sat for a few and then headed to dinner, where there was this super cute man singing away and Bo and Brookie couldn’t wait to join him! My heart was about to burst. I looked at John and said is this really happening!?!?! We then headed to get our nightly dose of ice cream! I think Leksi went back 2 times after that! Then it was time for the birthday party! Every single week their schedule is the same, last night it was Halloween, with trick or treating and haunted house. Amazing and sad all at once. When Johnny asked me why they were doing Halloween, I had to tell him that sometimes this would be the last Halloween for some kids! He looked at me and said, that’s why this place is so cool, it’s making all of these kids happy, including me!:) happy mom moment!!! So we celebrated Mayor Clayton, of give kids the world, which is a big bunny!:) it was his birthday!:) it was so much fun! I know I sound like a sappy mom, but I seriously can’t get over this! This place, if you wanted to volunteer any where, it should be here! Tomorrow were headed to Hollywood studios, the amazing Dream Factory arranged a meet and greet for Bo to meet Lightning McQueen, if you know Bo he LOVES his cars. I can’t wait! Goodnight.










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