DR TIME!!!

Monday we had our follow up with Dr Dasouki, I think Bo finally has a "diagnosis" IPEX! A rare genetic disorder that causes, diabetes,growth hormone deficiency,thyroid problems,IGA deficiency,chronic diarrhea. This is Bo in a nut shell. This is just the Health part of his problems. When he was 10 months old we have heard about this syndrome but until he got worse they would wait to test for it. Well here we are, IPEX, It is so rare the only Place you can send the test to is Seattle children's. We will eventually go to Seattle to meet with this Dr, Not now because it is flu season,all of our DR are on the same page and have had a conference call with this Dr in Seattle to make sure we are all in this together. This is going to be a learning experience for all of us, but our genetics Dr is amazing as is all of our Dr, But they are learning as we are. I would suggest you don't google it, its not a great read! We have talked about this for a long time, but hearing it from the Dr mouth is different. For 1 month I have had a lump in my throat,I know we can get through this! It is just alittle shocking to hear it. We have lived with this we know what we are up against, he was in the hospital just last week. It is just hard hearing it. Everyone knows i suck at blogging and i will try to get better so everyone can stay up on Bo health, I didn't want this to be a "BO Medical" blog But its the only way I can keep up without saying it over and over. We had an MRI scheduled for Dec 28 but the Dr said it was ok if we put it off for a bit keep him out of the hospital as much as we can. Besides the prep work for an MRI sucks, he as to fast not fun. With that said we are working hard on some of his other issues, trying to get him stable on his feel and working on getting his left side stronger! I promise you it could be worse I know I have seen it. We are so lucky to have such an amazing family and friends it helps us so much! SO thank you for all of your continued prayers and support.

here is a link if your intrested. www.genetests.org and clickon reviews seach IPEX

Hi!

I have said since day one I suck at this! So here I go again! Since the last time I blogged so much has changed it's crazy!!! So June 10th Bo got his GTube, it has been our life saver! Since June we o has been fighting what they call "Chronic" diariaha? So we have seen a new Gi Dr at KU who is amazing and Genetics also at KU and this work was thrown out a lot! IPEX SYNDROME (a rare genetic disorder) so rare we would have to see a Dr in Washington St! So ON Halloween we have this 2,050 blood test taken that insurance wont cover of course! We will find out on Dec 5th. I have been going back and fourth with this is it is it not!! If you go to www.genetest.org and click on reviews it will tell you more. We also just met with Immunology and found out that Bo also has IGA deficiency. Which means his immune system well he has none! Hints why we have spent so much time in the hospital. I have said to myself I need to blog but honesty I was not ready to put all of it into words! I am not sure why! That's just half of all of the things going on in his little body!
Brooklynn is a rock star talking so much she is such a character so funny! Leksi and Johnnny are ready for Thanksgiving break they are both trucking right along with school. It's hard to believe Christmas in in 5 weeks where has this year gone? Hell When the Twins were in the NICU i thought it would be the longest 3 months of my life but here we are! Crazy!I am looking forward to a Great Thanksgiving and trying to keep my mind off of DEC 5? The closer it gets the more nervous I get!

I am trying to talk my husband in to taking me on a Date sat, to see Breaking Dawn! I don't think he is going for it! I can't lie I am super excited to see it! Even though the books are always better!

I am blogging from my phone

I need my code

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Blogging from my phone!

Hi

1 surgery down 1 surgery to go!

So Today I had my Ablation, got to the hospital around 6:30 and home by 11. I was in some serious pain for a bit. I guess i was expecting it to be a piece if cake, I am not one to lay around I am just not a lay around kind of girl! But today I laid around it was like a mini vacation! My amazing Husband was fantastic he took such good care of me, he is so sweet(when he wants to be);) he clearly didn't like to see me in pain or upset so he tried what ever he could to help. My in laws kept the babies all day and they will have them tomorrow too so I can get some rest, I am so grateful that they are happy to have them for 12 hours at a time considering Bo isn't the easiest to handle he is very moody but my father in law tends to walk where ever Bo wants and has a lot of his attention My mother in law too I guess that's the benefit if being a grandparent. He wont sleep in a pack in play, so his Wonderful Big sister rocked him to sleep I will put a pic up of that I am sure my father in law took one. So we are a busy surgery family, today was mine and Next Friday June 10th Bo will be getting his G Tube. We have tried everything we can to avoid this but it just isn't happening. This is the best thing for him, even though I am stressing and so is John about our little guy having surgery but if this can help even a little it will be well worth it. So our Summer is off to a very busy start. I am hoping to be able to take The big kids and Brookie to the pool soon I am excited for that, Bo will have to stay with my in laws he is not a fan of the water, even though he swims once a week in therapy I have to swim with him. Plus I have to take his pump off and the heat makes his sugar crazy so we wont chance it.

Busy Busy!

It's offical school is out! WOW! were did the year go? Leksi Is 10, yes 10 she is going to be in 5th grade, I don't even know what to say about that. She is such an amzing daughter I could watch her and Johnny all day with B&B, they are so good with them! JOhnny is going to be in 3rd grade and we are in full swing with baseball, I don't mind it at all I love speding my evenings and weekends at the ballfield! I love watching Johnny play he is pretty good!( i may be a little bias)I am in my 2nd week of not having Brody and is been hard to adjust, Brooklynn Misses him alot sometimes I will see her looking around and I know she is trying to figure out where her B is? Brody misses her too who is he going to chase around trying to kiss! LOL! We have a busy few weeks ahead, I am having surgery tomorrow June 1st to have some issues taken care of, I am having an eblasion done and I am pretty excited about it. Mr BO is getting his G Tube Next friday the 10th part of me is ready for it and part of me is terrified, I mean it is surgery! I know in my gut this is the right thing to do he has to start putting on some weight. I know this isn't going to fix all of his problems but I am hoping it is the answer to a few things. We are going to start a new therapy group next week and for the summer we will have a new therapist I hope Bo adjusts to this? He Loves Shannon and we will not have her until the fall but she will be our group teacher so at least he will get to see her. All in all we are on the right track I hope I will keep you posted on Mr BO!!

Silly phone app!

Not sure why the Blogspot has an app for your phone if it's not going to work? GRRR!!!

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Blog from my phone yay!!

I swear!

I swear I think about blogging everyday I just don't do it! So here it is 11:55pm May 19, My lovely anniversary! 11 years wow! After these last 18 nmonths John and I can do anything! We are a pretty good team, we have to be considering! Yesterday was Leksi 10th B~Day 10! It can't be she is 10? Let me tell you a little about Miss Leksi Marie Macan, She came into this world May 18 2001 at a wopping 6.4on 19 in long! After being on bed rest for 7 LONG months My water broke at home at 3:30 am Lisa and Christy were in Florida for Nationals! My beautiful, amazing,caring,smart Baby girl was born at 6:41 am and she was perfect! She truly has made being a mom so easy, she is the best big sister johnny, Brooklynn and Bo are so lucky to have her! She is so much help I can't even begin to tell you! I do not even know where 10 years has gone she is going to be in 5th grade! YIKES!!! We are going next weekend with one of her friends and my sisters shopping then to the melting pot for dessert! I am excited about that! Not only did Leksi turn 10, Brody turned 1. Where has this year gone happy Birthday B MeMe Loves you! There is only 4 days of school left, I have to say I am not sad about that. I am ready to just hang out,no more homework whoo~Hoo!!! Leksi is in Girls on the run she has been working for the past 8 weeks 2 days a week running and now the 5k is finally here Saturday Leksi Me and Christy along with some others we will be running our butts off rain or shine! I am super excited, I hope I can keep up with her;)I will keep you posted!

Glasses anyone?

I have to say Last night was so funny! Bo and Brooklynn were putting on Mamoo Kris Glasses and BO Loved it, it was so weird he is such a sensitive kid about things I can't believe he likes it? He was so angry when we took them off of him! Still Waiting for Bo's Biopsy results from his esophagus! UGH I hate waiting!

I have tons of stuff to talk about Just dont have time right at this second? So I wanted to add a few pics real fast!

Good Grief!

So It has been a crazy few weeks! I am sure I have started off saying that a billion times. WE got out Appt moved way up since Bo didn't do well on his swallow study so On March 22nd WE met with the GI Dr. He was great he explained everything so well, John felt much better leaving there. WE went the 23rd for an upper GI and WE go Tuesday the 5th for His Ph Study and some other test they willo also do while he is under. WE will have to stay the nigth and hope his sugar stays where it needs to be? Once the PH study is done we will then learn if he needs to have a stomach surgery at the same time as his G tube? THe Ph study will see if he is refluxing and if so how bad? I am pretty sure he has pretty bad reflux his teeth are turning a light brown color and they think its from the acid! AWESOME! But on a posative note He signed thank you a few times actually, It was so cute and he even did it in therapy so I was not the only one who saw it? Brooklynn Is a show off and can sign all kinds of things,Thank you, more, please. ITs so cute It is so funny to Brooklynn is so funny she has the funniest faces ever! LEksi IS doing Girls on the run and she really enjoys it she will run her rist 5k on May 21st we will do it togehter! JOhnny is playing Baseball he likes it alot I cant wait to watch him. I oftern wonder if he will be as competative as his Dad??

Where do I start?

So I know its been a while? Story of my life!! So much is going on I am bit overwhelmed? Bo Bo Bo, Good grief I am goin gto have grey hair soon? SO we saw the Pulminalogist it went as well as can be expected he wanted us to have a swallow study done and if course that was not good.

Wordless Wednesday

A week at childrens!

So Monday the 24 we have a follow up appt at the Rehab Dr at Children's downtown. We arrive at 11:30 All weekend Bo had a Terrible cough I mean terrible Multiple breathing treatments on top of the ones we already give him. here is a pic at 4:00am Friday we were Literally up all night. But he has had this cough since October Hints why he was tested for CF? SO The Rebad Dr was not thrilled with his breathing so before we even get started he checked his Oxygen yep 82% Sweet! So we finish up quickly and the follow us downstairs to the ER, By this time he was having a hard time and was going on 8 hours with no liquid which is really bad when your baby has diabetes. So With in 1 hour they had admitted us and we were headed to 6 Hensen. Where the fun began, after 3 attempts to get his IV in it finally worked. I tried everything in my power to try to get him to eat or drink ANYTHING! I was failing pretty miserable. Around 5am Tuesday his IV went bad again?? SO instead of the BRILLIANT Dr's redoing his IV ON A BABY WHO HAS DIABETES AND NOT ATE OR DRANK ANYTHING IN AROUND 20 hours they decided to make me try to keep him Hydrated!! OK!!! again I tried everything ,juice, applesauce, yogurt, mashed potatoes, pedia sure, sprite,water,pedialyte! NOTHING!! So I was starting to get a little frantic you could tell his sugar was dropping since he was sweating really bad and shaking. I call the nurse and I tell her he needs his sugar Checked ASAP! I was serious and was not nice. it was 67 Which for BO is VERY VERY LOW he runs around 150-190 with his pump! I tell the nurse he needs an IV NOW he was so lethargic he couldn't even take a drink, because his sugar was low. SO 45 min later he even worse dripping with sweat and red flush cheeks and his body shaking out of control I pretty much freaked out! My nurse cam ein and checked him it was 28!!! I SAID 28 ARE YOU F#*KING Kidding me! So IN my bag I keep a little kit! I have frosting that is the first thing they suggest to give them when he is low. So I start squeezing it in. Then the "renal team" get there to put in his IV I of course was like OH NO you have to wait for his sugar to come up at least to 45 so he doesn't bottom out! So we get his sugar to 48 and they have to try 2 times to get it. They finally do and they push in a little sugar water. WHEW!!! that was my thinking, after 2 more days there we got to come home. WE will follow up with a Pulminologist to have some extra test done. Which brings me to what he has. CHRONIC LUNG DISEASE! don't ask me what this is or what we do about it we will find all this out on the 15Th When we see him again! TO say the least it was a very interesting time at Children's the First 24 hours we were their it was Fantastic but after that not so much. It was almost like they took advantage of the fact that I knew what and how to treat him as far as his diabetes goes But I couldn't get him to eat AT ALL so its there job to help as far as the IV and keeping him safe goes! The last day we were there the nurse didn't check his sugar for 6 hours??? 6 freaking hours? I of course had been checking it, so That evening I was done I told them to get me the DR we were going home? I had spoke to his Endocrinologist and he had told me under no circumstances was I to leave unless I felt comfortable with leaving!! See Our Diabetes Dr is at KU, I of course had no intentions to be staying there since we were their for an appt! All in all he is doing much better and we will find out treatment and our plan on the 15. The rehab Dr is sending us to see a Developmental Pediatrician so when that happens I will let u know!!!

Just in case anyone was interested, it is never a dull moment around here! Bo and Brooklynn pick on each other 1 touches 1 and the ohter one cries and then its switches. Its pretty funny really you sit and watch them for a little while. Now that Brody is getting around like a 1 year old and he is only 8months he can hold his own. He is Gulity of stealing a pacifier! He learned from the best! BROOKLYNN!

New year!

So My goal is to blog about my life and family Not just update everyone on Bo. I don't want anyone to think I am leaving out my 3 other amazing Kiddos! Brooklynn starting to walk a little she thinks she is so big, Leksi and JOhnny love that she will walk to them. She is so funny to she has this funny little laugh and she laughs the whole time she is tying to walk. SHe is very cautious, Bo is not he just goes with out thinking. Brooklynn stands there thinking about it and takes her time, Bo has NO I mean NO patience ( not sure where he got that maybe His DADDY) He tries and goes with his arms flayling. I am excited that I have finally taken the time to work on the blog so I can now upload pics and stuff here is a pic of Brooklynn just hangin out like she is so big!

Bo During the sweat test!

~sigh~

So we are now a week into having a pump and let me tell you, other then the maintenance for me and John it is going so great! Amazing sugars all day long. Guess what else I get to do? Sleep through the night for the first time since the babies have been home REALLY the first time! They said I do not have to check his sugar at 2am anymore? What? Really? I did the first 4 nights because I was just worried what if his sugar gets too low? Well on top of all of this Poor Bo is sick well he has been sick with a cough for ever since Halloween. 4 rounds of antibiotics, steroids breathing treatments you name it we have done it! SO yesterday we go get our synagist shot and we had a little pow wow and the Dr's feels like since he has been sick for so long it was time to do something else? I said OK Like what? They think it is time for Bo to be tested for Cystic Fibrosis! I of course immediately ask Why, What for what do you mean??? I also Know exactly what this is and I can handle a hell of a lot of stuff and have for 14months of Bo and Brooklyn's Life but I sure was not ready for that. One of my Clients and friends gave her nephew a kidney 3 years ago because he has it and his life expectancy is not like ours. Yes he is doing very well but he is also very sick. The test is called a Sodium chloride test we have to do it down town tomorrow the 7Th at 10am.

The test is done, Now well we wait! UGH~ he did a great job No we wait!!!!