Macan It Happen

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!!

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.

C

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!

C

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!

C

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.

C

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.

C

C

I have heard from a few people just how amazing this place is! But… Until we arrived today I didn’t really grasp just how amazing it is! It has by far exceeded our expectations, and we haven’t even made it to a park! It’s beautiful here, 77 today! Our day started early heading to the airport at 5:45. We were all up,and ready no problems! Our flight was great, we even go a huge shout out from the flight attendant about where we were going and why! It was great! When we pulled in to give kids the world my heart could hardly contain itself from beating right out of my body! Every single person here is a volunteer!! They volunteer their time to help with everything! I mean everything! I guess just getting here was such a process for Bo , now that we’re here I can’t wait to see what the week brings! Bo got in a pool today, I couldn’t tell you the last time that happened! It may have been to his knees but we will take it! I will post pics when I can! Thanks for all the well wishes! Hugs to you all!

C

2013, has sucked I mean it’s been the worst year of my life, of our life! 127 days in the hospital. I was in the hospital the first day of 7th grade for Leksi and 5th for Johnny, I missed picture day for the 2nd year in a row. It has been hard on our whole family. Not to mention the constant roller coaster ride our kids are on with Bo’s health! They worry about him all day long! Bo is so very lucky to have these 2 in his corner! It has been a very rough year, that’s why I’m so excited to see it go! Bo has literally been in lock down, no school, no therapy, no store, no target nothing! That can be challenging also if we need stuff! My poor husband has worked so hard for our family, he has to work to,provide for us and I know at times he wants so badly to be at the hospital to help, to support me and Bo but sometimes it just can’t happen! We love him so much for his hard work! We’re lucky he’s our Babe!:) 2013 has had 16 sedation procedures, 2 chest tubes, 6 bone marrow biopsies, liver biopsy, 2 lung biopsies, removed an infected port, (which is is second port)
IJ line, 3 mri’s, 5 ct scans with contrast, 19 chest x rays, 17 abdominal x rays, both of his little knees had to be drained, 10 spinal taps, over 20 seizures, 8 rounds of IVIG, 15 iron infusions, 19 blood transfusion, 3 rounds of platelets, realization he is allergic to benzodiazepine and it makes him bat shit crazy, a trip to Harvard, and soon we will travel to NIH, he has been on 6 antibiotics for 6 months, and not sure how long he will have to stay on them, the entire month of June and most of July in the hospital. Which meant our other kids summer sucked! It has been a roller coaster of emotions we have an amazing support system were so blessed to have the family and friends we do!
2014 will have its challenges I’m sure , starting with some changes we have to make to our house, boo to that but I will write about that later! All I know is I’m so glad this year is coming to an end! We’re starting 2014 with our DREAM FACTORY TRIP to Disney!! In early February I pray all goes according to plan and we won’t have to reschedule! We have already had to do that once! We will also be traveling to NIH to see a specialist who’s who would revolves round a kid like our! We sent all of his medical information and boy was it a lot! 10 CD’s of just images. I have no idea what 2014 will bring, but I hope and I pray we get some much needed answers. Thank you everyone for your support, we know if could be so much worse, I see it with many families we have come to adore from the hospital. I can’t wait to see what 2014 brings for all of our kids, starting with an amazing trip to Disney!! We will tackle all of the stuff as it comes , we will live one day at a time and be grateful for all of the support! I have to remember and keep my head up and know how much support we have! Thanks everyone!

HAPPY HAPPY NEW YEAR

C

Bo,is finally starting to feel better, we don’t have any results yet from his biopsy maybe tomorrow! He has gone all day with no pain meds! Yay! One step closer to getting us home! He has been such a trooper, he misses Brookie so much! I don’t like her to come up very often I worry about her catching something, not a great time of year with flu season and RSV season. We know is IJ line in his neck sucks, it’s temporary, I hope it last us for a little while I don’t want him to have to have any more procedures for a little while, 2 in 2 weeks pretty major ones is plenty! We have not scheduled our appt at NIH yet, they have to receive all of Bo stuff and let me tell you how much stuff they had to send!? His medical records are like a mile long! One thing I do want to share is how amazing I think KU MED is!!!! One of our Nurses Jen, made Bo a cake today, I will up load a pick, just because he had a rough few days and wanted to cheer him up! She works nights so needed to sleep today but instead make this cake it’s amazing and who does that? It helps so much knowing these amazing people that take care of my son are so passionate and sincere they love Bo and know how hard it is for us to be away from our family! It mY life so much easier! I appreciate them more then they will ever know!