About Me

MY name is Coltyn and I was diagnosed with Biliary Atresia at 2 weeks old. I was born on April, 30, 2011 a happy healthy little boy. Then I went to the peditrition and I was getting more jaundice and not gaining weight so I had to have blood drawn and that is when they discoved my liver counts were all very elevated for a newborn. From this point on I was refered to STL Childrens and saw a Liver Specialist there. I had a liver biopsy done when I was 5 weeks old and then my kasai done when I was 6 weeks old. For those that dont know Biliary Atresia is a rare liver disease where the ducts in the liver dont form all the way and bile backs up in the liver damaging it. This disease effects 1 in 20,000. Then 80% of the kiddos with this wind up with a liver transplant before the age of 5. I am going to be in the 20% that dont need a transplant until adult hood.

Friday, February 17, 2012

Sick LIttle Guy

WEll it has been a rough week for this little guy.  He ran fever over the weekend and just couldnt get comfortable enough to sleep.  So I took him in to the ped on Monday and she siad that everything was fine and that is could just be the seperation thing and him waking is his way of making sure I am still there. So we didnt do anything.  The ped did agree with me that Coltyns liver was abotu 1 cm larger then it had been on feb 2, but she said she was not to worred about it because he was not at all jaundice or tender when pushing on it. Then Tuesday night he started with a croupie cough so we decided to ride it out a little since his sister had the same thing.  Well wednesday came around and coltyn and his sister were not feeling well at all and not eating much so i called the ped again and made appointments for Thursday for them both.  When i got to the sitters to pick them up she was holding Coltyn and said he is not happy this morning and wont let me put him down.  He screamed the whole way to the ped then screamed the whole time in the waiting room then continued to scream once we got back in a room.  I had no idea what to do for him cause I didnt know what was going on.  The ped came in and was asking what his symptoms were and said it sounds like he has croup for sure and then looked in his ears and said this is the problem it is infected and then looked in the other ear and it was also infected.  She went out to get teh nurse cause she said we have to give him something for the pain, so they gave him some Tylenol.... Poor baby.  then she looked Kendyl over and well she has had a cough for about 1.5 months that has developed into croup which is not uncommon for her.  She gets croup all the time.  They did tell us kiddos usually grow out of it, so that is what we are hoping for with her.  Anyways they looked in her sinuses and said well this is her problem she is all swollen and full of congestion. So now they are both on amoxcillian and I am hoping they are better before Sunday as it is Kendyls 3rd b-day and we have her party!!!

So other then Coltyn being sick we are doign well.  I am still worred about Coltyn since he will be 10 months in 2 weeks and still not crawling.  He is at least now getting up on all 4's and trying a little, but not very often.  I have asked about it and the ped said they all develop at their own level and he will do it eventually.  I am going to check with his GI team and see that they say when we go back in a month.  We will have teh ultrasound, labs, and see the GI team and the Surgeon team.  I am hoping that they tell me that things look GREAT still and that they dont need to see us for another 3 months like this past time. So we are just taking it a day at a time and enjoying every minute of him and his sister.  I am so ready for the warmer weather to be able to take the kids out and play!!!! We have a zoo goers pass this year so i am so excited to take them to the zoo and do all the extra things and not have to pay!! It was a GREAT Christmas present!!!! We are also trying to plan a trip to Florida for a week in September after everyone goes back to school.  That is all for now.

Thursday, February 2, 2012

9 Month Check-Up

So I took Coltyn for his 9 month well check at the ped today.  He is doing very very well.  He is still in the 3% for his weight but considerin he is gaining and not loosing we are good!!! He is 16.13 pounds and 27 1/4 inches tall.  He is in the 25-50% for his height.  His head is also ont eh smaller side, LOL, it is in the 3-5%.  I am fine with all of this though.  He is growing, gaining weight, and developing well.  That is all he needs to do!!  The ped couldnt believe he was 9 months already and she couldnt believ how healthy he looked.  I thank god every day for my little guy and how well he is doing with this crappy liver disease.  So all in all it was a GREAT check-up.  He did have to get 1 shot but other then that he was a happy little boy. 

I have been a little emotional latley with all this for some reason?  I just look at how some people take so many things for granted and just think they deserve everything and dont think twice about family.  I am just blown away at this.  I know it shouldnt bother me but it really does.  I look at life in such a different view then many I guess.  I cherish EVERY minute I get to spend with my family and appreciate what they do for me.  I wouldnt have been able to deal with this without many of them.  I just wish everyone looked at life like this and did things for others and didnt compare themselves and think they are better.  I sat and held Coltyn last night in his room in his rocking chair and just thought how lucky we really are to still have him in out lives and how well he is still doing, and that we have a home and have a healthy 2 almsot 3 year old daughter and that my husband and I both have jobs.  I pray every day for those people out there struggling and going through hard times.  Liver Disease sure dies suck but has opened my eyes to way more then I ever realized.