Hayden had a wonderful visit with the doctors !!!! I had a paper with many questions that I had been pondering on. Haydens skin is best they have ever seen and feel he is doing really really good on his taper down on the steroids . He should be off steroids July 4th which. Is exciting but yes but when he goes to his final taper June 1st they want it to stay there until we meet again they feel its better to hold for a while then let it go and take 10 steps back which I think makes sense but still dont like it. So we will come back July 21st to see how things go and possibly meet with the gamma globulin trial team (the special test he had for his antibodies) and hope to to be done with steroids !!!!! We extensively talked about his gamma globulin injections. They are going to start weening him on the amount in the injections in May with a IVIG base level and see if his level stays the same or drops and this will corilate with the trial they are researching down here in Seattle. As the gamma globulin is weened if he drops significantly we may have to adjust . What this means is can or is Haydens body producing antibodies other factors does Haydens cord blood donor blood able to to hold strong and firm antibodies ..... Remember the blood Hayden has was infant blood. I then asked why arent they logging health information of the history of family of cord blood..... Doctor said you know they are trying to change that but its a process it will not help you and Hayden but hopefully it will for better patient care she also said they arent pushing for family name but health history. Hayden May by next month only be on his Antirejection drug and steroids they want to have a couple more liver test come out in perfect range...his liver enzymes were high after he was sick a couple weeks and they want to make sure its only that.... Thats right 2meds yippie plus injections They were all pleased with his vocabulary and how in 3 months it is improved so much. While I was talking to the doctor Hayden was playing with toys on the floor I wasnt really listening but a couple times dr burros looked at Hayden them me after the 3rd time she said wait .... Do you hear what your son is saying I said no she said I think he is saying a bad bad word..... I look over and he is playing with this garbage truck I said does it sound like duck with F in the front she said yes and she said Im just surprised because I can normally tell parents who use bad words and who dont and you dont Im sure..... I assured her he is saying truck and she almost fell out of her chair .... But this gave me the opportunity to tell her Hayden says mommy sucks ..... Haydens blood draw was kinda stressful!!! Bow wasnt there Hayden was really cranky hungry.... This older lady have nothing against older at all called him back and I carried him and she said at some point you are going to have to make him walk....ok take a deep breath so Im kinda upset sensitive but dont say anything I sit down hold him and she informs me her coworker will be in to hold him and I could sit in a chair across the room or wait out in waiting room ....., I informed her I knew how to hold and he would sit on my lap and she could draw ...... So she said fine but she wanted her coworker to come for back up I said ok Im fine with that....she started looking at both arms I decided to see wait and let her do her job ok its been at least 10 minutes then she says wow whoever drew him here really bruised him probably didnt wrap it well...( ok Im just about to lose it) I calmly say where the bruise is is where he gets drawn its a really good vein Im not sure you will find anything else but if you do good. In comes Silvia who has drawn Hayden before asks how I was and yes I was crying then Sylvia said She didnt really need to hold Hayden .Haydens mom is one of the best and she does this for a living ... The phlebotomist looked at me and said oh Im so sorry and thank you for not coming across to me with your credentials (What!!!!!!) she drew Haydens blood just fine ....so I thanked her and put Hayden down and he walked out !!!! Guess I should start letting him walk ..... Criminies sake Anyway a lot of good news ..... Truly blessed Jacquie
Posted on: Sat, 29 Mar 2014 04:30:59 +0000