Update:

Well there really hasnt been to much going on this month.  Coltyn has been doing pretty well.  The BIG news this month is that he FINALLY hit the 20 pound mark!!!! This is a huge accomplishment for a child with Biliary Atresia as your liver does alot of absorbing for you body that allows u to grow and gain weight. He is still very small for is age, but we are still growing, just on our own curve as they call it. We will take that though.  HE has had some more issues with vomiting the past few weeks, but the liver doc said that she doesnt want to do anything since it is just once a day and it is not bile or green and he is not getting dehydrated.  So we are just going to let Coltyn be Coltyn and let him take charge and see what he does.  Otherwise things have been pretty quiet since we got home from Florida and his last Liver appointment. We will stop taking one of his meds here in November.  He is only on 2 meds right now and one is an antibiotic which he is on due from the last hospital stay and having had cholangitis.  So prayers that things go well for us when we go off them and he DOESNT get cholangitis like we did last time. 

LIver check-up

Well Coltyn had his liver check-up on Tuesday September 25, 2012 and everything went FANTASTIC!!!!  His labs and ultrasound were good and she was alright with his weight and height.  He is still 19 pounds and 77 cm long.  HE is growing but very slow and he is very little but she said as long as he stays on his own growth curve and doesnt start to fall off she is alright with that.  We did learn that we are giving him to much milk in a days time.  He would notmally drink 35-40 ounces of milk a day, but she said that he should only have 24 ounces in a days time.  So we are to cut back on that to see if he will eat more and gain some weight.  She said he is filling up on empty fats calories and that is probably why he doesnt eat that well for us.  SO we will see if this helps and make sure he is getting protein and things with high carbs in them.  She was happy enough with everything that she doesnt need to see him for 6 MONTHS!!!! YAY GO COLTYN!!! I was happy for him that he is doing so well.  There are so many others that are not as fortunate as we are and have had to do transplant by this age.  I thank god everyday that we are so blessed and have been so lucky.  He sure has been watching over my sweet little boy.  I did ask the doc about tranplant and she said well yeah it can just fail and he would need a tranplant and she siad but most have or need a tranplant by the age of 2 and well Coltyn is not going to be one of those as he is doing so well and she said we arent even considering transplant at this time.  SHe did say we are hoping to make it a few more years without but all we can do is wait and see what happens.  So it sounded as if it will happen sometime in the future just not sure when.  I pray that when it happens I have the strnegth to make it through, but I have my family by my side through it all and they will help us through it when the time comes. All we can do is celebrate and be happy that he is doing as well as he ia and move forward and ENJOY every minute we get with him and him being healthy.  We will try again to go off the septra in November, so we will see how he does this time.  I am hoping that things are better then last, but if not that is alright we can make it thourgh again. So as for now  Coltyn is doing AMAZING and we are enjoying every minute of if!!!! WE even went to Florida this past week!!!!!!!!! Everyone had an awesome time!!!!!! Very much needed time away and time with my parents!!!!

Update

I just wanted to let you know how things have been going for Coltyn.  Each month this summer he seesms to get sick with something.  May he had cholangitis, June he had hand foot and mouth, July he had something that was making him vomit for a few weeks on and off, then August he had a nast nsaty virus for a week that caused him to not eat and be very very fussy.  HE never got really congested just a high fever for 3 days and uncomfortable. I took him to the ped and she said that she thought it was a virus and to wait and see what he did by mid week.  So we did just that and his fever finally broke but then he was up all night screaming and screamed the next morning so I took him back and she said she felt it was still just a virus but would feel more comfotable if we took him to Childrens and have him looked at and make sure we arent over looking something.  So I called and spoke to his liver doc and she said bring him down and that we were going to be admitted.  So we went down and had labs done and IV fluids which seemed to help him alot.  WHile we were waiting on the labs the liver doc came down and looked at him and siad that she was comfortable if he quit his screaming stuff and if labs were stable for him she was willing to let us go home.  SO Coltyn did cooperate and his labs came back alright and he quit screaming and started acting more like himself.  His labs did show that he was a little dehydrated so tha extra fluids did help him out.  HE wasnt to happy that they placed the IV in his hand.  LOL Every other time he has had an IV was placed in his feet, but this time they decided to do his hand as he is walking now and they dont like to place them there when walking unless that is the only place they can get.  HE was trying to take the dressing off by pulling at it and then he tried to bit it off and then he tried hitting things with it to see if that would work.  It was pretty commical to watch, but he really wasnt to mad about it just tyring to see what he could do I guess.  While he was sick here in August he lost everything that we have worked so hard for him to gain!! HE lost 10 ounces in a weeks time.  He was 19.10 pounds and 30 incehs tall on August 3, but was down to 19 even on August 17. HE seems to have made a turn and has been doing much better the last week or so. He was eating GREAT but for some reason he has decided that he isnt to much of eating again.  I am keeping my fingers and toes crossed that Coltyn cooperates and keeps up the good work so we are able to go on our vacation this year on the 15 of September. We are planning on heading to Pensacola Florida for a week!!! We are all very much looking forward to this.  I am in need of a few days off and time with my kiddos and hubby and my parents!!! We will be driving so I am hoping the kids do well in teh car.  When we get back Coltyn has an appointment with the surgeon and liver doc to see how he is doing and MAYBE taking him off the antibiotic again? I am a litlte nervous if we do as he has had such a rough sumemr I am not sure how winter is going to go for him?! o-well we just take it a day at a time and then go from there.  I will post antoher update when we have one.  Until then I hope everyone has a wonderful and safe Labor day weekend!!!!

Coltyn....well being Coltyn!!!!

Sfar things have gotten better since Coltyn had the cholangitis.  His labs were looking better at his liver check-up in June and he was acting more like himself.  The first week of July Coltyn threw up 3 times that week, but Steven and I THOUGHT we had a reason for all 3 times??? LOL The first time was on Tuesday the 3rd and we were eating at Applebee's in Washington and we gave him broccoli, which he has never had, and he threw up after eating some of that so we thought it was just that he didnt like teh broccoli.  Then on the 4th he got sick again before bed, but he was throwing such a fit about going to bed we thought it was the fact that he had himself so worked up so e didnt think twice about it.  Well then on Thursday morning the 5th he did it after we gave him his medicine, but we thougfht it was just from the medicine. So that was it for that week he was good to go until the next Thursday July 12.  On the way to the sitters he decided to throw up all over the car. So then I called the ped and she said she would like for me to call the liver doc and get labs done and then if those were ok we could all relxa a little.  So we had labs done and they were good and didnt show any signs of dehydration at all.  But on firday morning he threw up once again right after we gave him his morning meds.  The liver doc said since his numbers were ok she wanted to see what he did over the weekend and then take it from there.  If he continued to get sick then they would do an upper GI to check for obstruction.  This can happen from scar tissue from teh kasai.  Other then this he has been pretty good, besides not sleeping!! LOL but I will take that over everything else.  So as far as this week goes he hasnt gotten sick and he seems to be doing good. Hoping it stays quiet!!!!

Liver doc check-up

Well it has been a year since Coltyn had his kasai and he seems to be doing well.  We did have that 1 bout of cholangitis but he seems to be recoverying well from it now.  His AST ALT and Bili are all NORMAL again!!! YAY But his GGT and Alk Phos are still high but they seem to be trending down, which is what we want. The Liver doc said that the 2 that are still high are the ones that take the hardest hit with cholangitis so she wasnt concerned.  I was so happy that Coltyn FINALLY gained some weight again!! It has been since February!!! He is close to 19 pounds!!! He hasnt grown much but I am going to wait and see what he does at his 15 month check up before I get worried about that!!! So all in all it was a good check up.  I am nervous about stopping his antibiotic again as last time we wound up in the hospital but we will stop that in a month then we will also stop his vitamins and see what happens from there.  I am crossing my fingers things go well so we can stay off them both but not holding my breathe. LOL Coltyn also got the OK to go to Florida in September!!!! WOOHOO!!!!! They did remind us that things can change on a dime but we will go forth and plan on heading down south in September unless something happens where we cant go, but we will just take it a day at a time like we do everyday!!! I HATE liver disease but we cant chaneg it and we just have to live with it. Things could be a tons worse then they are so I count my blessings each and everyday!!!! I couldnt ask for more!!! Coltyn is to follow up with LIver doc and Surgeon in 3 months since he had the episode of cholangitis a month ago.  Hoping numbers are all NORMAL so we can graduate to every 6 months!!! So his next appointment will be Septmeber 25!!!! I am also happy to report that Coltyn has taken a few steps and is crawling everywhere!!!!! It only took him 13 months to do it but he has!! :)

1 Year Post Kasai

Today Coltyn is 1 year post kasai!!! I am so happy that he has made it a year without a transplant and that he has done so well this first year. At this time last year we were walking down to the PICU to see out sweet little guy.  It has been a GREAT year with him in our lives. I still remember that day like it was yesterday.  I am so thankful for the doctors and staff at St. Louis Childrens Hospital that took GREAT care of him and still take GREAT care of him when we have to be in the hospital for anything. I remember the most crying most of this day last year as I had to hand my little 6 week old over to doctors to do a major (5 hour) surgery on to hopefully by him time before transplant.  Even though Coltyn is having issues now he has made it a year without anything major and we will get through this as well. I LOVE to see him smile and LOVE his little laugh as well.  He truly amazes me each and everyday!!! He goes next week Tuesday for a check-up with is liver docs and surgeon so we will see what our plan is from there.  I am hoping for good news but I have a feeling things arent going my way as he is having pale pale stool which means bile isnt flowing like it should, but we will burn that bridge when we get there.  I will take him at least being out of teh hospital to celebrate his daddy's 30th birthday and fathers day this year as last year we were in the hospital for both. So I will update with Tuesdays informastion once I know something. 

Update on the cholangitis

Well since the last post Coltyn got hand foot mouth which is a virus and they cant traet it with anything.  All they recommend is Tylenol for the discomfort which they said he couldnt have becasue of his liver being unhappy at the moment.  The GI doc's nurse called me on Monday and said to stop taking the Cipro and start the bactrim.  Bactrim was what he was on for the first 6 months post kasai and that we didnt need to repeat labs until June 19 when he is scheduled for his follow up testing and appointments.  If he gets fever, jaundice, or other symptoms that we know to watch for to bring him in to the hospital as he has the cholangitis back.  So we are waiting to see if things go our way.  I told him when I gave him his bactrim yesterday that he isnt aloud to get sick becuase it is daddy's 30th b-day on Saturday and he was in the hospital last year on his b-day and fathers day so he needs to be good and stay healthy so we can celebrate daddys b-day and fathers day AT HOME this year!!!! GI doc isnt to worried about labs beacuse she said things take a while to get back to NORMAL after cholangitis so we are just holding our breathe that things will get better and that we wont have anything major go on and he will be good to go again.  He ALMOST made it to a year without any problems!!! June 15 will be 1 year post kasai!!!! My how I remember that AWFUL AWFUl day like it was yesterday!!! I am just so happy that I have him here with us and that he is doing as well as he is.  Oh yes and to top it off Coltyn learned how to CRAWL!!!!!!! It only took 13 months but he is officially a crawler!!!!! So proud of my sweet miracel baby boy!!!!!!!!!! Will update with any news when there is some to report. Thanks for the prayers and thoughts!!!