Our friend Heather Morrow, who photographs our family, is doing a day of mini sessions to help fund our upcoming trip to Cincinnati Children’s Hospital. (Click on the photo to see it larger.)
Today Bo got his port!! Yay! It went very very well!! I was so very thankful to KU med- the people at that place are unbelievable! After our big fiasco getting his g tube at Children’s, this was a walk in the park!! I can’t explain how wonderful all of the nurses were!!! Bo will rest for the next few days! Next week we will figure out our schedule for the other stuff! Thanks!
Tomorrow morning we have to check- in to KU at 6:30am- it’s Port Day! The port will go on the left side of his chest. Hopefully it will only take an hour to an hour and a half! Please pray Bo’s blood sugar cooperates, for his body not to reject the port, and his pain is under control!! We are supposed to go home tomorrow afternoon, depending on his pain and his blood sugar! I hope this happens! I hate this feeling of not being in control, it’s so very stressful and heartbreaking to hand your baby off to a stranger and hope they will try to comfort him! Ugh it makes me sick!! I pray tomorrow is easy and quick!! No problems at all!!! Pray for his pain to be under control and that his blood sugar regulates!!
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. That’s Bo in a nutshell. This is just the health part of his problems. When he was 10 months old we heard about this syndrome, but until he got worse they would wait to test for it. And now we are here: IPEX, It is so rare the only place you can send the test to is Seattle Children’s Hospital.
We will eventually go to Seattle to meet with this doctor but not now because it is flu season. All of our doctors are on the same page and have had a conference call with this doctor 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 doctor is amazing, as are all of our doctors, but they are learning along with us.
I would suggest you don’t Google IPEX, it’s not a great read! We have talked about this for a long time, but hearing it from the doctor’s mouth is different. For a month I have had a lump in my throat but I know we can get through this! It is just a little shocking to hear it. We have lived with this and we know what we are up against- Bo was in the hospital just last week. It is just hard hearing the diagnosis.
Everyone knows I suck at blogging but I will try to get better so everyone can stay up on Bo’s health. I didn’t want this to be a “Bo’s Medical” blog but it’s the only way I can keep everyone up-to-date without saying it over and over. We had an MRI scheduled for Dec 28 but the doctor said it was okay 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 has to fast and it’s not fun. With that said we are working hard on some of his other issues, trying to get him stable emotionally 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 amazing family and friends. It helps us so much! Thank you for all of your continued prayers and support.
Here is a link if you’re intrested. www.genetests.org, click on reviews, and search IPEX
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!
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.
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!!
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!