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Destination NIH

Today is the day, was the day. We headed out at 6:18 this morning to Maryland, to NIH. We made it 700 miles, which if you know Bo was quite a task. He actually did a really great job considering how far we went. We will get up in the morning and play some catch, chase captain america and eat some breakfast, I will give him a few meds and we will finish our journey, hoping it will only be 4 hours. As I had 12 hours to sit and do. I dress thinking today, I couldn’t help but think about this week what will they say, what is next, are they close, do we have a plan, I have so many things going through my brain. I am not medically educated, but I’m educated now medically because of my child! Does that make sense? I have been writing questions Down and honestly looking back at them, you truly have to know some crazy stuff to come up with questions like mine! Which is where my brain stops,with, are we there, do we have a plan. Thanks for all of the
Racers and well wishes. It truly helps.
Here are a few pics from today!





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Almost 5 years ago when Bo and Brookie were born I wondered what it would be like when they were in pre-k, pre school, any sort of activities before they head to kindergarten. When you have 2 babies that’s what you think about, the outfit I will put them in, will they be in the same class, would it be better if they aren’t?!? All of those questions, the what IF’S, today Brookie started Pre school, 57 days until they turn 5. Today Brookie went to pre school with out her twin brother… It didn’t really hit me until we were getting ready to leave and I was taking her Pic, Bo was sitting on the couch with the nurse and he ran over and said he wanted his pic taken too. Ugh, instantly my heart kind of sank, I felt so sad,sad that I wasn’t going to get a pic of them outside the school together, sad that he can’t attend , sad because he has to stay home with a nurse, sad because he knows no different. Is this the way it’s supposed to be, how I pictured it?!? It’s these days where I can’t help but get a little pissed about things, how much he has been through in his short life, pissed because he is missing out on important things, important to others, but for us it’s how our life is, how Bo is. I had to pick myself up and remember this is what’s best for him, he can not risk the germs. So we played a hell of a lot of cars and I made him the biggest road I could outside!:) we’re heading to NIH October 14, for blood, tests and more stuff. Not really sure of our itinerary but I will let you know when i do.

Here are a few pics from today!





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Saying goodbye is never easy.

We have had a rough few weeks. Bo spent 10 days in the hospital, during those 10 days our beloved, spunky Bo’s great Grandma Nina, wasn’t feeling spunky either. She hasn’t felt spunky in several months, it’s very hard as a parent to try to explain to my kids why grandma Nina isn’t feeling good?!? They aren’t used to it, she plays on the floor with them, she dances with them, she let’s Brookie put make up on her. Watching this amazing women slowly slip away from us is heart wrenching, it sucks. John has so many amazing memories it’s so wonderful to hear him talk about them, he loved her so much! Nina’s 89th bday was last week July 2nd.she enjoyed cake, coffee even some mashed potatoes, she had several visitors and it was like she was pleased with that, she had her mind made up that after her bday she was tired, tired of fighting. She went to bed, and we didn’t hear her sweet voice ( or sometimes not so sweet voice again) She lived an amazing 89 years. She gave all of my kids so many memories, she was always so worried about Bo. Some days she would call me 2-4 times to check on him. We’re sad, we’re heartbroken but were also relieved, she is dancing in heaven tonight with Becky and Mike and I’m sure it’s an amazing sight to see. Please keep our family in your prayers as these next few days are going to be rough. Especially on My father in Law, who is our life saver and our rock, give him the strength to say goodbye to his beautiful mother, my husband strength and his 2 sisters to say goodbye to their grandmother and my kids to say goodbye to their amazing great grand mother. We love you Nina thank you so much for loving my children.

You can read Nina’s obituary here.




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How It Has to Be

This week!
It seems, every time we have some huge event representing Bo, he isn’t feeling great! He hasn’t felt great for a few weeks, he has lost a little weight which stresses me out. Getting more feeds then normal and just not 100%. We’re sitting at KU getting IVIG and fluids at the moment and he is super restless, my heart hurts for him when he is like this. The IV team comes in and places his line since he is still with out a port, and Tony, who,is wonderful after he and I had to hold Bo down. He rubbed Bo’s head until he feel asleep… that makes my heart Burst knowing how amazing he gets treated here! Tony asked me, how do you do it? How do you stay so positive, is it your faith, your family, what, you just amaze me is what he said! I smiled at him and thanked him and I told him we have amazing support, I can’t say you get used to your 4 year old getting poked and prodded on, that is something you never get used too. But you have to be strong, make sure he doesn’t see fear in your eyes, he needs me, he needs me to be strong, for him and everyone else. Believe me I have moments were I need to cry, where I’m frustrated and scared to death! I guess when you choose the responsibility of being a parent, you have to give up yourself in a way and be a that person who fixes everything weather it be a toy or wrap his arm in orange coban so he doesn’t have to look at the Iv, or the meds going through it. I like to think every single parent out there would do the same, I KNOW parents that are doing the same! All I know is we are trying, trying our best to keep smiling keeping our heads up! Waiting to hear from NIH was rough the first few weeks, then I had to tell myself, that this amazing boy is a large puzzle and putting the pieces together will take time. I can wait, we will wait and we will take it one day at a time, hour by hour if we have too! That’s just how it has to be.


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A week in the life…

It has been a super rough week in the day of the life of SuperBo… Bo isn’t feeling good , which means NO, I MEAN NO sleep. He is barely eating and I am losing my mind! Bo has had a rough week, rough as in a few days of his blood sugar in the mid 40is, most of the day, even with a continuous feed, bolusing him with 4-5 ounces of juice through his tube in the middle of the night! I mean, really i think in the last 48 hours I have slept maybe 8 hours! My poor hubby who has to too get up and go to work,ugh poor thing! This is where I become a very frustrated mom, I can’t fix my baby and he won’t let me comfort him.its so frustrating as a mom,
So at 3:00am he was crying that his toes hurt?!? Of course I go into panic mode, his sugar was low, he was crying, he couldn’t get comfy, it’s the hardest part of being a mom. I mean the hardest. His toes??? Weird, I think it’s weird… How do you comfort a kid where everything Hurts it sucks, I hate it and it makes me so angry… It makes me a freaking lunatic too, I’m constantly checking his DEXCOM( his glucose meter) to make sure he isn’t too low, the past 2 days he has been in low 40′s, that’s LOW FOR HIM!! He wont eat for me or drink much, for me, if you know Bo the one thing he is, is a DRINKER(an apples juice drinker) when he won’t drink I know something is up! Please I hope this is just a fluke, we don’t get labs and IVIG until next week, I really don’t want to have to do it before, for his sake!!

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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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March 18, 2014 - 9:34 am

Kaleigh - We love you Bo! Each and everyday we pray for you and the family! Stay strong:) answers are soon to be in the future!

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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