So I didn’t mean to post that last one until I was finished. I told you I sucked at this! This week is Thanksgiving can you believe it? Some sad news Megan Passed away yesterday Monday Nov 22, As I am so thankful she is out of pain it was really hard seeing her in so much pain. My heart aches for her 3 children and her husband. It is hard enough losing a loved one but the week of thanksgiving ugh~ They will still celebrate as a family Thanksgiving we are making them a feast where they can sit as a family and enjoy each other and celebrate Megan’s life. Then Friday we will Have her funeral and again celebrate her life, she will be missed and I pray her family gets through such a difficult time! We are all well we are gearing up for the holidays and I am so excited to cook with the girls Wed evening. Leksi is really excited also. MR BO is being a pain lOL.. He still has a double ear infection which makes his sugar CRAZY which makes us up his insulin then add a humalog. SO now he is getting Insulin after each meal so he is getting stuck at least 3 times a day from insulin and 1 with is growth hormone!! UGH I hate that I am pretty sure we will move to a pump come Jan 1 after we get some tubes and a healthier little man. So all in all we are well I hope everyone had a fantastic Thanksgiving! I swear I will figure out Pics soon I just need to take the time to do it!9I have so much free time):)
I swear I suck at this blogging thing! I can’t figure out how to put the stupid pics on here ugh! It’s pissing me off! We have had a pretty exciting few weeks we had to go up in Bo’s Insulin 2 times, now we are giving insulin after meals we will see how long this last before we he gets a pump? I don’t like sticking him so much but right now (knock on wood) it’s working! SOOOOO I gave my speech I really did it I was totally terrified but I got up there John got to come with me and I did it!!! I wanted to say so much more then I did, but I am just glad i did it and I did it with out crying! whew!!! I was proud and SO glad it is over. It is hard to believe next week is Thanksgiving where does the time go? Leksi is so funny she is so excited to hang out at my moms on Wednesday night at my moms where we spend hours cooking, wee are making much more this year some for our good friends and Neighbors Megan our Neighbor is Ill very Ill she is at Hospice house where she is fighting everyday to stay alive We are hoping for her 3 kids sake she can make it through thanksgiving?
I can’t even explain my emotions right now! As i sit here at 10:10 pm the day before the babies turn 1 it’s so bitter sweet , it has been the longest year of our lives but the fastest! Last year at this time I was laying in bed with the highest blood pressure ever imaginable and here we are 1 year later! I do have some updates as far as Bo goes, he got a cold which is a bad thing when you have diabetes everything in the world has sugar in it and the Dr all they care about is keeping him hydrated well his sugar went up to 299 so on Monday we started insulin it actually has made a world of difference maybe just maybe we will be good for a while! We also met with the Rehab Dr on Monday, this has been a long time coming also we have had this appt since April 5Th yes April. So he came in and did all kinds of things and of course wants to do WAY more so we will start all of that next week! Starting with some muscle test, they know something is going on with him they just have to figure out what which also leads us to getting genetic tested we will have that done in a few weeks also! Leksi and Johnny had their Halloween parties today they were great, the babies were a hit in there costumes. We are having the babies bday party on Sat I am so excited for that! Also I was approached by one of the ladies who works for SMMC and they have asked me to give a speech at the Tiny Tim fundraiser which benefits the SMMC NICU and the Lee Ann Britain developmental center, at first I was like OH NO there is no way I could do that but the more I though about it the more I thought how can I NOT do this? I spent 56 days there and they saved my children’s lives so On Nov 7 I am giving a speech(in front of 1000 people) Lord knows if I will be able to get through it without crying but it will be my chance to say thank you, thank you for everything! If any of you know me you know that I am SO not a person who will just get up and speak so I am trying to prepare myself for it. One of the nurses who took care of B&B so many days at least 25 days she will be there and I am at least excited about that, that she and everyone else who had the babies can hear me and know how very important they are to me! On that note I should really go to bed It is a big day tomorrow my babies will be 1!!! Leksi and Johnny do not have school either I am excited they will get to hang out with them all day!! What a year what a year!!!!
YEP!! we got the word forsure yesterday that Bo does have type 1 Diabetes! I was at the Dr forever so much to go over so much to figure out. I turned in his glucose monitor on Monday morning, they called and said come in on Monday the 18 that should give them time to up load all of the information and they will h ave everything ready by then! Well Monday late afternoon evening I got a call saying Dr Santiago wanted us to come in Wednesday! I knew what she was going to say, so I wasn’t that shocked yet I was very shocked! The Nurse took Bo out of the room so her and I could talk and 10 min into our conversation I could feel myself not listening like I couldn’t comprehend what she was telling me? I was pretty much felling sorry for myself and for Bo. This is going to affect him for the rest of his life and Mine. Not only that thier is a 70% chance of Brooklynn also having it!~ WHAT?? at that point The Dr looked at me and said your handaling this very well. I laughed and said well what else am i supposed to do? SO we meet with the Nutrisonist and the Diabetes specialist in Tuesday and we will know more, as of right now we think we they are going to put him on the insulin pump, for 1) its just easier then giving him shots everyday 2)its easier to monitor. That is the plan as of right now, its so weird I was totally feeling sorry for myself yesterday JOhn is out of town and my brain was on OVER LOAD! So i put all the kids to bed last night and took a LONG hot shower and cried my eyes out then I was so upset with myself becasue I felt like the most selfish person in the world because it could always be worse. I promised myself to day to have a diffret attitude, sometimes it’s so hard all of the stuff that Bo has been through in his tinly little life sometimes gets so frustrationg to watch him do it all! He is a fighter he has been since his 2lb body came into this world he has been fighting ever since! I am releved to finally have some answers and hopefully we can move forward and he will start gaining some weight and get stronger! I will keep you updated as far as the rest goes when he gets his pump! OH I have this AMAZING FRIEND she made the babies B~Day invites and let me tell you I totally cried today when she sent them to me, its so hard to believe the year we have had and how far the both have come. In just a few shorts weeks the Babies will be 1 and I just can’t believe it!!
So I finally had the courage to let other people look at my blog and it has been pretty good! So I should be better about posting! SO Last Wednesday we head to see Dr Santiago the Endocrinologist we kind of got our plan in to action as far as his growth hormone goes. We stared that on Sunday it was pretty easy now we just have to remember to give it to him every single night at 8 for, well forever! But while we were there some blood work came back bad! YEP bad, so they think or well they are pretty sure Bo has type 1 Diabetes YEP! So my brain is on complete over load researching online about it, well only 1% of babies the age that Bo is has Type 1 so it has been pretty challenging as far as that goes. We had a glucose monitor inserted into his tiny right Butt cheek On Tuesday the 5Th of Oct and low and behold it came out this morning! Awesome! we will go back tomorrow and try again. The problem with this is he Pees so much most kids with diabetes does, so we will have to have them put it in his tummy. This is just temporary it will check his sugar 288 times a day so we will know when it is low and when it is high! So when it is high depending on how high we will know weather or not he will need insulin! So that is where we stand! As I sit here I cant even begin to tell you how crazy it is that the babies are going to be 1 in 22 days! It doesn’t seem possible yet it has been the longest year of my life! lol!! Leksi went to the 1 room school house yesterday for school and loved it she dressed up in a long dress with a bonnet and an apron she looked so cute! JOhnny finally has a super front top loose tooth should be coming out any time!
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!
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!
This is a Pic of My little man before he was about to get his MRI! He was a champ, he always is he loves all of his theapist and Dr he sees! I think it’s becasue he sees so many people he dosen’t really know a stranger, Not sure if this is bad or good! Now Miss Brooklynn on the other had is a rock star she gets around like crazy, and is just so busy! BUT she still has no teeth! Soon soon very soon I hope! Leksi and Johnny are back to school and Loving it! It’s hard for me to believe they are in 4th and 2nd grade~sigh~ Lets home Lekis’s love for school and learning rubs off on Johnny! This is a pic of Leksi and Johnnys 1st day of school!