KU MED!

As I sit here to start to blog I am reading another blog, It just put my life in to perspective because as I was going to sit here and complain about everything that is wrong someone has it much worse! Much sicker kids much bigger hurdles, yes we still have our fair share of hurdles but not compared to some! So let me start by saying I am not complaining I am venting letting it all lose! LOL! Just agree with me! SO let me tell you about out KU MED journey! So Since Mr Bo is almost well 11 months old today and still a whooping 12.9lbs! We decided to start testing his sugar so the first 3 days it was great but Monday the 13th I test it at 7am and it is 26! YES 26! I didn't freak I called the Dr and of course we had to go in. We get there the do a few things and they need to get some urine from him so they send me home witht he stuff to get it that next morning! We had therapy later that day and again during therapy it dropped to 36 so Shannon our Wonderful OT gives him some yummy yogurt and I call again. First thing Tuesday morning we drop off his urine and it was crystal clear like water, i didn't think much I don't really know what its supposed to look like? I have done my pee detective work yet! SO with in about 1 hour we get a phone call its My Dr he says he doesn't like the way hie urine looks he was going to call his long time friend and head Endocrinologist at KU he would call me back! With in 30 min Dr Migheigt Calls me personally at home and says I need to bring Him to KU NOW? I say ok, get packed up and head to KU My mom kept Brooklynn for me. We get to KU get checked in and a BOAT load of Dr came in and wanted to know his history, UGH so I started in our LONG history. About an hour later the Endro came in and told us what he was going to do. First just wait and see if his sugar drops in the next 24 hours, OK! So it go to 60 but he wanted it to get to 50 or lower. The next day wed they were checking his sugar every 4 hours, around 3pm I could see the change in Bo and even the Peds Dr said he looked like his sugar was dropping at 4 his sugar was 59 after eating normal and everything, so around 5:30 Bo got very irritable and was flush so I made them recheck it and it was 24! So they had to take a LOT of blood from him. I fed him and he was super pissed and irritable so we had a super long night! The Dr came in and said they were going to do a water deprivation test in him starting at 7am so he had to Fast from 5am on! OK well his blood pressure was super low and so was his sugar so they moved him to the PICU! YEP that was a place let me tell ya! So they were still going to try to do the test at 7am if at anytime his pressure dropped was not tolerating git they would stop. So On top of his IV in his head they had to do another on in his poor arm, where he has so many scares already from he NICU bless his heart, they couldn't get any lines in SO after the 4th try and now its 9am and has had no food for 5 hours they call the "IV TEAM" They lady got it in really in a half a sec. So we can begin OH wait they have to put a catheter in him!! UGH! that was NOT fun, so we get started every hour on the hour they draw his blood and take his urine for 6 hours!!!6 my baby who only weight a large 12.9 lbs had to fast for almost 13 hours it was HEART BREAKING to say the least! They had to stop the test at 3 because his sugar was so low they were hoping thy had all they needed. I was about to eat my arm off so John let me go down and eat and just walk around, The PICU SUCKS just a stupid wooden rocking chair it was brutal! SO we proceed the Endro Dr came in and tells us that some of his blood work is in and Bo produces NO Growth Hormone NONE not even a Millimeter? OK so we have to so a Hormone test then an MRI of his Pituitary gland to see if there is a tumor or something blocking it!!! At this point I thought I was going to vomit I had really only slept about 4 hours in 48 hours now and now they are talking about making him fast again and doing another long test and an MRI! WHAT THE HELL! Even better the Hormone test was going to start at 4am. SO Bo has some food and a Bottle at 9 and can't eat after that until after his MRI which is at 12:30 the next day! Let me just tell you about our night! It was the worst night of my life, He cried for 3 solid hours from 11-2 since we were in the PICU we couldn't walk the halls or anything the poor Nurse kept coming in and asking me if I needed anything, finally at 2 we both cried and I walked in a circle until the came in at 3:30 to get him started for the test so neither one of us slept ALL NIGHT! they started the test and the Med they had to put in his IV totally knocked him out I was not sure it it was because he was so exhausted that he just slept? SO 6am comes around I am sitting in this terrible chair and his blood pressure was LOW I mean LOW 70/29 then 68/22 I call the nurse because the have to take his pressure every 5 min then it was 69/24 so the nurse calls the Dr and checked his sugar it was 316!!! WHAT 316, so 45 min later his sugar was so high on the monitor it only said HIGH no NUMBER I was freaking out! the Dr comes in you could tell we totally woke her up she was like stop the test open his Iv all the way to get some fluid in him, Mind you the whole time he is sound asleep hardly moves at all. Had to call John at 7 and tell him how terrible our night was. He took Leksi and Johnny to school and headed up. My brain was about to Blow up seriously if I didn't get the hell out of that room. So when John got there I crawled into Bo's Bed which was a sight my big body in it, don't worry it had a weight limit of 350lbs I was good! So I slept for about an hour and then it was time for the MRI, that I was dreading having to put him to sleep! While we sat and waited for the MRI I walked I had, John sat and waited for the up dated from the Nurse then when I got back John went and got a coffee. Then they came out and were pretty much running they had oxygen on him and again I could feel my heart in my stomach as they are walking so fast to the elevator they tell us to get another one we cant ride on it with them! HOLY CRAP I could feel tears filling my eyes and JOhn was just rubbing my back and I swear the elevator took 30 min. AS we sprint to the NICU the are checking his pressure because it was low during the MRI, the Anaesthesiologist kept saying he did well OK then if he did well why is he on Oxygen. All i kept seeing was the day in the NICU he stopped breathing turned Blue and next thing I know their were 5 nurses working on him! UGH~ SO here we are the 28th of Sept we see the Endro tomorrow and will know for sure if he has diabetes for sum reason its hard to diagnose in babies! Of course it is! But his one blood test his insulin levels were OK not great but not terrible, so where does that leave us? Checking his sugar 3 times a day and waiting! We start Hormone Injections On Sunday we know that much! We will know more tomorrow!

Here we go again

So Monday June 21st we have our usual 11am Ot appt! Well today didn't go like normal, she wanted us to see the PT the next day ok!! So next day Tuesday we go to PT and again some concerns the want us to go see the pediatrician. So Today we go see the Dr at 10:45 and we got the words CEREBRAL PALSY!! OK so as I am sitting their and this is not a new word for us we have known all along that it was a possibility 1)I had super duper Pre~Eclamsia almost E~clamsia,2)I have a blood disease that affects my placenta 3)had a biopsy of the baby B (BO) placenta it was bad! Plus all of the other things that came with having 30 week 2 lb babies. SO here we are!
I Started this post back in June and just now getting to it ugh! since this day we have seen the Neurologist and have moved to a different facility to do PT OT and Group therapy! Which by the way is AMAZING, the people we have met are amazing and have made my life so much easier! We still are not 100% on a diagnosis of CP, Yes they still think he has it among other things he is a very "stressed" baby partly for being a 30 week preemie and having a rough go of it his first 50 days of life!

Time

So I know I have not "blogged" for a bit I just can't get used to it! It has been a busy first few weeks of summer, usualy we take our vacation the first week of June. Johnny always thinks we are going for his B~day. So we celebrated Leksi 9th B~Day and Johnnys 7th B~Day. My where does the time go? We also got a new addition to our family Mr Brody James Cothren was Born May 18,2010 at 1:44 pm! Leksi's 9th B~Day and Lukes graduation, and Casey had to have emergency hand surgery! All in all it was an amazing,crazy emotionl day. So clearly with the last 7 months we have had we did not go on vacation, Johnny and Leksi went to the lake with PaPa Jay and of course had a wonderful time, I am thinking about taking the babies down next week? But i am a bit scared they are in such a routine and I am not sure how well it will go over the already sleep terrible so i don't want to give them any excuse to sleep even less. The Dr keeps telling us the NICU time will eventually go away, really they are 7 months old so when??

All most summer!

I really can't believe its almost summer? It seems like this year has just flashed by us! With the babies coming so early it made the beginning of the school year seem like forever ago, yet here we are at the end! UGH~ where does the time go, the babies are almost 7 months old Leksi is going to be 9, my brother is graduating which does not seem possible, and my long awaited nephew will be here any day!! WOW what a year! I was talking to Johnny last night why he was getting ready for bed, it is so crazy to me how much he has changed this year, (still a pain in my side) he is reading well clearly at a 1st grade level, at the beginning John and I were so worried about how he was doing is he even comprehending what he is doing? Then when the babies came our whole life was in crazy mode with me being in the hospital for the first week then when I came home going up their 4-5 times a day it was so hard to juggle everything and still feel normal! But we managed John clearly did an amazing job keeping everything in order so I didn't Freak out!

Our 1st Blog!

So I have been hearing from a ton of people you should blog! Really Because I have SO much time let me tell you! Well here I am it seemed silly to me at first but now I have had so many people ask, how are you how are the babies, how are Leksi and Johnny?? Oh yes and My husband, LOL! Well here we are I am now a "blogger". So Just to start we are all doing great and are so blessed to be healthy, happy and as normal as most! The babies are still in OT and PT it's going really well, until we started eating with a spoon, UMM not so well. Mrs CLaudia(our ot) is going to have a hay day with them Monday. Leksi, and Johnny are wonderful as always the are amazing big brother and sister they enjoy B and B so much! They are ready for summer though especially Johnny he has kind of lost his focus in school. Everyday I ask him how was your day? He usually will say "well MOM with a sigh it was not great" " I didn't get a smiley face" I will ask Why he usually says I don't remember LOL really! So we are ready for Summer too! Once I figure all of this out I will put some pics up you have to see Bo in his High chair SO SO funny he is so little in it!

Wow!

So I never thought I would be the mom , or the person to Blog But here goes! Since I am pregnant with twins I needed some time to myself and put my feelings on paper I guess you can say! 21 weeks and 3 days Pregnant to be exact and now in the 2nd week of school, JOhnny is in 1st grade, he has his days where he loves it and then days like this morning where he had tears! so hard and frustrating. Then their is Leksi who could go to school for 12 hrs a day, so focused and excited. I am just glad school is here and we are back to some what of a routine I hate that not feeling organized like in the summer when your not sure what your going to make for dinner, don't get me wrong I LOVE my summer. This summer Kind of sucked since i was Pregnant and sick for the first 12 weeks! But better now and glad fall is near! Luke has his first game next Friday Sept 4th I am super excited about that, so is he! Then their is my husband who is amazing as always, he does so much for me its wonderful. We are getting ready to start or remodel to get ready for the babies and he has his work cut out let me tell you. I am going to be a raging BI if you know what I mean, I can't stand for my house to be in crazyiness so he will have to deal with me.LOL.. POOR thing