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!
Friday, April 22, 2011
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!
Friday, April 1, 2011
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??
Tuesday, March 8, 2011
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.
Wednesday, February 9, 2011
Thursday, February 3, 2011
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!
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