Well Lots has been going on Grayson got another line infection last week but it was only a short stay in the hospital, we went in Oct 1 to Oct 4. he will be on an IV antibiotic for 2 weeks which will end next Wednesday, Clinic went well this week, we mostly talked about his need for O2 but can be alot of things, because when he was originally diagnosed he has PCP pneumonia which is horrible and most kids don't make it when they get it. So we know some damage happened and he is on so much immune suppressant, he can not heal well, he may have developed some asthma from it also so as we go down on his steroid its harder on him, also could just be his infection, or a virus. But it could just be because his growth is stunted due to the immune suppressant, and so because hes gaining weight but not height it may be his lungs can not being in as much air. Ugh But other then that everything else looked great! we are tapering his steroid tomorrow :/ Hes been doing good eating and has been trying a few new things each day, turkey, apples, bananas ect... Other then the dang infection he got last week things are going pretty good :) He has an extra 4 IV infusions a day so that's a little tiring but worth it of course. So proud of his progress! Love you little man.
On the girls front its fall break and they are enjoying the relaxing no school schedule, Brynlee has a little cold and has been on lock down from Grayson and is going crazy. LOL They even just surprised me and folded 2 loads of laundry for me!! Love you girls and you are always such sweet hearts and so helping!
Mason is pretty busy at work which he loves! And its doing awesome! Love you hun!
Man I am so blessed to have such an amazing family!
Friday, October 11, 2013
Tuesday, September 17, 2013
Love my girls and all there ideas LOL
Costumes and Concerts are part of our everyday life with these crazy girls :) LOVE THEM
Click Here to see the Video I snuck :)
Click Here to see the Video I snuck :)
Our Announcement that I was pregnant with Grayson. :)
I stumbled upon the video I made to announce Grayson coming into our family, to my family
Click Here to watch if you are interested! Word for warning LOL there is a Creepy pic, I had to put it in there cause someone decided to photo bomb my camera so this was my pay back haha.
FYI we didn't tell anyone not even family I was pregnant until we found out everything was OK and found out his sex. Because of our past :) and this is how we told my side of the family. :)
Enjoy :)
Thursday, September 12, 2013
Some things Grayson has been up too!
Got to go to a parade!
He has learned how to feed himself!
He is a great mess maker!
Loves his sisters!
Hes taking a bottle and has his tube out now!
Hes standing and Playing and trying to take steps!
Thinks hes to big for the high chair so he has to sit up to the table LOL
Loves cleaning everything!
Sorry its been so LONG!!
So the day after the last post Grayson was admitted again on JULY 5th and was in until the 19th I believe was the day we were discharged, This time he has grade 1 GVH again of gut and skin. So we switched everything to IV , steroids and his cyclsporine and he is doing soooo well we are able to do it at home so that makes it 100 x better :)
We have been tapering down his steroids he was doing so well we were going 1 mg every 4 days, until we got the night dose completely off, we started at 8 MG morning and night. Once that does was gone we started the morning dose but are going much slower. Since we have failed tapering this does so many times
:( so right now we are doing 1 Mg ever two weeks. Which he seems to be handling pretty well, his poop got a little loose (not watery which is a sign of GVH) and his skin was red (but not splochy which happens with GVH) Which at last clinic apt on 9/5 his cyclsporine level was pretty high which would make some of the side affects happen, his level was 520 and should be 250-350 so they went down on his dose and Tuesday it had only gone down to 499. So they went down again and he doesnt look as red and his poop is going back to normal LOL I'm sure you just love me talking about poop but that is party of our lives we are obsessed with poop and gaining weight LOL.
He is progressing so well in physical ways, social ways ect.. you can just tell he is doing so much better and feels so much better too! He does not have the stranger anxiety as bad as before, hes becoming much more trusting of others, hes talking signing, blowing kissed, waving, scooting on his bum (they don't think he will crawl due to his line in his chest if he lays on it, it hurt him) he is also starting to take steps holding on to our fingers and even some along the couch. The big thing we are working on is transitioning on to his tummy, and siting up from laying on his back and standing up from the floor. Its crazy because he went from 6 months old when he got sick and was stuck at the mile stones he was doing up until about 2 months ago and since he has felt so much better he is making up for all the lost time!!
He also LOVES shoes he has gotten a few more pairs lately and wants them on all the time :)
Hes doing so well its amazing, this is the longest we have been home since he was first admitted December 17th 2012. On September 19th will make it 2 months we have been home!!
Please keep the prayers coming they sure have been helping!!
Love you all!!!!!!!!!!!!!
Oh we go back to clinic on the 19th
We have been tapering down his steroids he was doing so well we were going 1 mg every 4 days, until we got the night dose completely off, we started at 8 MG morning and night. Once that does was gone we started the morning dose but are going much slower. Since we have failed tapering this does so many times
:( so right now we are doing 1 Mg ever two weeks. Which he seems to be handling pretty well, his poop got a little loose (not watery which is a sign of GVH) and his skin was red (but not splochy which happens with GVH) Which at last clinic apt on 9/5 his cyclsporine level was pretty high which would make some of the side affects happen, his level was 520 and should be 250-350 so they went down on his dose and Tuesday it had only gone down to 499. So they went down again and he doesnt look as red and his poop is going back to normal LOL I'm sure you just love me talking about poop but that is party of our lives we are obsessed with poop and gaining weight LOL.
He is progressing so well in physical ways, social ways ect.. you can just tell he is doing so much better and feels so much better too! He does not have the stranger anxiety as bad as before, hes becoming much more trusting of others, hes talking signing, blowing kissed, waving, scooting on his bum (they don't think he will crawl due to his line in his chest if he lays on it, it hurt him) he is also starting to take steps holding on to our fingers and even some along the couch. The big thing we are working on is transitioning on to his tummy, and siting up from laying on his back and standing up from the floor. Its crazy because he went from 6 months old when he got sick and was stuck at the mile stones he was doing up until about 2 months ago and since he has felt so much better he is making up for all the lost time!!
He also LOVES shoes he has gotten a few more pairs lately and wants them on all the time :)
Hes doing so well its amazing, this is the longest we have been home since he was first admitted December 17th 2012. On September 19th will make it 2 months we have been home!!
Please keep the prayers coming they sure have been helping!!
Love you all!!!!!!!!!!!!!
Oh we go back to clinic on the 19th
Thursday, July 4, 2013
June :( was a crazy month ugh
Well june started out a good minth celebrating my adorable little man turning one! But unfortunately we had a few trips to the hospital.
In total from may and june we had 5 hospital stays.
O2 levels
Norovirus
Norovirus
Bacterial infection
And lastly gvh flair which we just got out for Wednesday the 26 th of june. Friday june 28 his clinic went good numbers looked good. Then july 3rd numbers looked good! Except his prograft level keeps coming down even with increasing the dose so my gut is telling me we might be ending up back in the hospital :( I don't think we have gotten the gvh under control. So hopefully they just can start him on tpn again and give his tummy a little break. :( to heal.
In the good new department he is without feeding tube!!! And taking all his bottle by mouth!!! So exciting!
Over all our little man is an amazing fighter and such an inspiration to us. On top of all this he is also going througj normal baby things like getting his top teeth :( and is lots of pain because of it.
Gosh I love tha kid !
The girls are loving summer and I see them about as much as I do when Grayson os admitted because the love grandmas and cousins houses. So we have been misssing them like crazy.
We go to clinic again tomorrow so we will see where we are at gvh wise.
Love u all!!
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