Fun times and chemo again.....

Everything has been going great the last two weeks.  We had Dad and Priscilla visit on and off for about two weeks.  It was so nice to have company.  I get pretty lonely.  Tommy got us some bikes and the boys’ seats to go on them and even a child trailer to put them in, so I can take both the boys on a bike ride all by myself.  The weather is so nice.  We all enjoy the bike rides. 

The boys on our first bike ride with the tote!  So cute!

Sunday was BayBay’s birthday.  Laurie and Jarrell brought the blow up slide that they have.  They put it up here so that Kohlton could spend some time with BayBay.  Kohlton may not be able to go to his birthday party so it was very nice of them to do that.  BayBay and Kohlton had a blast! 



Happy birthday BayBay!

Trying to get them to say cheese!

This is priceless!  My baby is so happy!

Could this be love??  Baby Kason and baby Emma.

Yesterday was Kohlton’s chemo day.  We had to head to Pensacola for blood work in the am.  The Pace office still has no tech to do the blood work so, on to Pensacola we went.  I called to see where we needed to go in the Pensacola Sacred heart area, the last infusion center always had us come to them so Kohlton wouldn’t have to meet another person and be upset.  After I explained this to the new infusion center they told me ok come on up.  Once I got there it was a completely different story.  The nurse, we’ll say her name is “J” gave me this long speech about how she was doing me a favor by doing my sons blood work there, but for future blood work she would not do it, I would have to take him to the diagnostic center inside of Sacred.  This fired me up, I still remained calm and very nice to her, just ask Mrs. Tia.  She came with us and she even said “J” was very rude!  (By the way this “J” is the same nurse we had problems with last antibiotics and IV of fluids appointment and I asked for another nurse)  She also told me she was going to go ahead and access him so that way she wouldn’t have to later.  I told her, that Dr. Parmley told us never to do that, it’s too much to risk infection to the port.  She looked at me and said “well, I’ll check with the doctor but I’ve always done it that way, so I don’t know why he wouldn’t be okay with that”.  I simply said “Okay”, knowing if she came back and did that I would refuse.  She came back by saying “Dr. Schwartz said no because if his counts were not good then we’d have him accessed and I’d have to come back to take it out”.  I simply said “Okay”.  Once she started the needle work to get his blood, she did okay until the end.  At the end of it, you know when they pull the needle out and then put the cotton ball on it with pressure; well she decided she was going to leave the needle in while applying pressure.  Well, what do you think happened when she did that?  He started screaming hysterically and surprise he now has the biggest bruise he has ever had for blood work.  Ridiculous!  Ok now on to the doctors’ appointment, it went great.  Kohlton has a bump that showed up on his head about a week ago.  Dr. Schwartz looked at it, said it looked like a bite but he is not happy with it.  Told us he was going to keep a close eye on it.  If it’s just a bite it’ll go away, if it’s something else it’ll shrink with chemo but not really go away.  So, until next appointment we’re going to be pretty much on edge.  Kohlton really likes Dr. Schwartz now, he didn’t even cry while he checked him out.  Kohlton did so good.  (Proud momma!)  So all of us had time to waste until Kohlton’s blood work came back to do chemo.  WE grabbed some lunch and then headed back to Sacred.  I figured we could go see his favorite ladies, the FUN and LOVING old pediatric infusion center.  Mrs. Mari walked out and he just ran into her arms, same with Mrs. Chris.  They just love him and he loves them too.  We got to visit with them for about 5 or 10 minutes.  It was great.  He was so happy to see them.  After that we headed back to the other infusion center.  (By the way, I do not call them good and bad infusion centers anywhere near Kohltons ears.  I want him to make his own opinion and hopefully not be scared of them.)  Okay so we get back up there and right of the bat “J” says with a smirk on her face “okay we need the bed to swaddle him?”  I guess she saw the answer on my face, because before I could say anything she said “oh wait we use the recliner, and you hold him right?”  I was about to blow up at her, but thankfully my eyes showed her what I was about to say.  We went back to the room and waited about 45 minutes to an hour for the chemo to come up and her to get started.  This whole time she kept saying it’ll be here in about 5 minutes, and calling it vincristine and not vinblastine.  So, I had to keep looking at everything and correcting her.  I had to keep making sure it was the right paperwork and the right drug.  This entire time I kept saying “he takes vinblastine, not vincristine.  Which drug are you talking about?”  She would answer with “oh its vinblastine, I just keep overlooking it.” She would say that while laughing.  She ended up doing the chemo and we were able to leave.  I have already called the supervisor and left a message with her.  I cannot let my baby go through that again!  It’s almost like she took her time and was beyond rude to us.  She kept making me look through all the paperwork again.  Tell her all his surgeries, scans, and all that again.  It’s in the file is all I could think.             

We got home and everything is great so far.  No new side effects.  Kason is sick and has an appointment today at 130.  I hope whatever he has is over soon and that it is not contagious to Kohlton.  His bottom is so tore up.  He is still a happy baby as long as you change his diaper about every 30 minutes.  Poor guy!  I will let you all know how he is doing once we get back home. 

Kohlton has blood work on Friday to make sure his counts are good.  If they are good he will have his surgery on Monday for his ears.  I won’t know exactly what surgery it will be till Monday when they look inside them.  It might be just a cleaning of the inner ear or it might be the removal of a Cholesteatoma.  The ear cleaning takes about 20 minutes and the removal of the Cholesteatoma takes about 4 hours.  So we are on edge for that as well. 

Kohlton fell asleep while praying!  So sweet!

Please keep praying for Kohlton and all of us!  We appreciate everything all of you have been doing to help us!  Thank you, thank you, and thank you!  Please keep praying!