Last update for 2012

Coltyn has been doing pretty well.  He has had alot of viruses but we are still trucking away. He recently made it up to 21 pounds but is now back down to 20.  I am guessing it is from being sick with the viruses? He has had a few more episodes of vomiting the last few months but nothing major at all.  HE did it 3 tiems in November and not at all here in December, well besides the stomach flu he had.  GI is fine with letting it go for now as long as its not green or bile and its just once a day. Other then that Coltyn is doing really well.  HE is talking up a storm and repeating EVERYTHING you say.  So we have to really watch what we say as he repeats and or says it when he shouldnt. LOL HE did go off his antibiotic November 20, 2012 so we are hoping he doesnt get cholangitis again!!!!! Last time we went off he got cholangitis about 3-4 months of being off of it.  But we will see what happens this time. He is doing well so far so we are hopeful it continues and he can stay off the antibiotics. Coltyn is still very small for his age, but we are ok with that as long as he keeps gaining weight and gorwing we are good to go!!! He may be small but he sure is a tough cookie.  He amazes me each and everyday!! I thank god for him as he has tought me so much.  I still am having a hard time with him turning 2 in April :( Where has the time gone?! I mean really??? He has been through so much in his little life and I am so glad he is doing well and we have been able to cut back on his blood draws and doc visits!!! He will go back March 26,2013!!! Hoping he gains between now and then. Thanks everyone for all your thoughts and prayers!!!! The quote I LIVE by is:

YOU NEVER KNOW HOW STRONG YOU ARE UNTIL BEING STRONG IS YOUR ONLY OPTION!!!!!!

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!!!

LABS LABS LABS

Well Coltyns cholangitis doesnt seem to be going away with the oral antibiotics.  His labs keep going up each week we have them checked. We are to have labs doen for the next 6 weeks once a week.  So when we left the hospital some were trending down while others were going up but this week everything went up. BUMMER!!!! We are still waiting on the doc to call us and let us know what she thinks we need to do.  I just dont understand what is going on but we will see soon.  Here is a little spreadsheet of what labs should be and what his are right now and what they have been the last 3 weeks.

(NORAML range)                  May 21,2012           May 26,2012               June 1,2012
      
ALT (5-50)                                185                             183                            192          
AST (10-60)                              61                               110                            113
ALK Phos (110-320)                 682                             640                            797
GGT (7-32)                                173                             258                            319
Total Bili (0-1.3)                         1.4                              .5                                .2

So this is pretty much how it has been the last 3 weeks.  Not that is makes any sense but all the above deal with the liver function so they should and need to be in the normal range.

1st episode of Cholangitits

Well Coltyn has been doing so well with his Kasai until Friday May 11, 2012.  We were at my nephews preschool graduation when I though Coltyn felt warm and he was very crabby and wouldnt eat that eveing when we got home.  He had an alright night and slept ok as well.  Saturday May, 12, 2012 I had my first 5K run and dad had to take Coltyn and Kendyl to soccer so I could run.  When I got home and the kids got home my husband said he had to give Coltyn Tylenol as he felt warm like he had a fever when they were at soccer, so I said oh well that is alright we will see how he does throughout the day then go from there.  Well he wasnt himself at all and when he got up from his afternoon nap he had fever once again so I decded to take him to Urgent Care and see what was going on.  Well we waited forever there and the doctor said that he had a double ear infection and that we needed to contact our ENT on Monday May 14, 2012 to see why his tubes were not draining and placed him on Augmentin for the infection.  He had tubes put in April 30, 2012.  So on Sunday Mothers Day he felt a little better but still want himself.  We just thought it was the medicine making him not want to eat and be fussy.  So Monday May 14 came around and I called the ENT first thing that morning and then finally about noon time I got a call from the nurse and explained what was going on and what the Urgent Care doctor said Saturday and she was rude and kept telling me that cant happen and that doesnt make any sense.  I said I have no idea what she saw to say he had an ear infection but that is what she said and I was tol to call you on Monday like I am doing.  She said well we can see you Wednesday May 16 to check him out but to keep him on the Augmentin until then.  So we did just that but I was aggervated about how she treated me so I called Coltyns primary care and made an appointmnet with her to get her opinion.  She looked in his ears and said that there was no way that he had a double ear infection on Saturday as his ears are crystal clear with NO fluid in there at all.  I said well that is why I came to see you.  Do you think there is something else wrong then? She looked everywhere and looked closely at his hands, feet and mouth as there has been alot of that going around and she there was nothing that looked like he had that.  So then she proceeded to check his liver and said that that felt about 1cm larger then she remembered it being.  So shwe decied to call Coltyns liver doctor to see what she thought.  They decided to take him off the Augmetin since he had no ear infection and see what he does from there as he has been doing so well with his kasai.  So we did just that.  We were told if he gets fever back to call GI and let them know then go from there.  So on Wednesday May 16, 2012 I received a call from the babysitter that Coltyn had a fever of 101 at 11:00 am.  I went and picked him up and took him home and checked his temp myself and it was 101.8 so I called down to GI and they called me back with the instructions to take him to teh ER and that we would be admitted for at least 48 hours for antibiotics for Coltyn.  So when we got to teh hospital Coltysn temp was 103.8 and all he did was lay on me and wanted to be left alone.  They did lab work and an ultrasound and started the IV antibiotics while we were in teh ER.  Coltyns fever broke while in teh ER and he was so much more like himself.  HE still didnt want to eat much but that we knew he didnt feel good.  When we got labs back all his liver numbers were up.  They did severl tests to see if he just ha da virus or what was going on.  We knew we were there for at least 48 hours but then the GI doc came in to see us Thursday morning and said that we would be there until at least Monday May 21, 2012.  I was not happy as I just though it was a quick stay and he would be back to good health.  Well I am glad we stayed as each day his liver numbers and bili went up.  He was looking more yellow to us and the nurses so I was gald he was still tehre and on the IV meds.  On Monday May 21, 2012 we did get to go home as his total bili had dropped from the days prior but all other labs are still going up.  He is on a strong oral antibiotic and we have instructions that if his fever returns to bring him back to the ER and he will need to be admitted again for IV meds.  So we are hoping and praying that this doesnt happen and that his labs start to improve soon as we have them drawn every Monday for teh next 6 weeks.  Thsi about sums up his first bout with Cholangitis.  Wea re so very lucky that he has made it this long without any problems and hope this is the last and he gets back to the NORMAL labs and no issues very soon!!!

1 Year Well Check

So yesterday Coltyn had his 1 year well check.  Coltyn only grew 1/4 of an inch in 3 months time!!! He is now 28 3/4 inches tall and well his weight wasnt that great either, he was 17.5 at his last check and is now 17.15 so he only gained 10 ounces in 3 months!!!! The ped is not to concerned since he is still gorwing and staying on his normal curve, but we will have to see what GI thinks in June.  I am hoping that the tubes will be our magic fix and that will make him gain weight and he will start gorwing.  My fear is that once GI sees he isnt growing much anymroe we may have issues, but only time will tell.  The liver is the main concern with all of this as it absorbs everything that your body needs and if his isnt doing that then we may have a problem?! Other then this the appointment went well.  He is slowly doing the milestones!! LOL He does them on his own time and at his own pace!! HE just started to army crawl about 1 month ago and then the last week he just figured out how to go to sitting from laying on teh floor without help.  He still isnt pulling up to much but he will cruise a little around things when we stand him at an object and he will walk holding our fingers but not behind a toy!! LOL He will get there eventually one day!! I have calmed down about what he SHOULD be doing at his age and just keep telling myself he will do it just give him time and he will figure it out.  He has been through alot in his 12 months of life.  So we are stiing back and letting him go at his own pace and I am not going to worry anymore about it. So all in all he is doing GREAT and there are no concerns other then i am concerned about the weight and height issue, but only time will tell us what we need to be doing.  Thanks for the prayers and support!!!

Coltyn is "1"

I have put some pics of both kiddos just cause!!! Hope you all enjoy!!! Ok well Coltyn has officially turned "1"!!! I cant belive he is already 1!!!! IT just seems like yesterday that we brought him home.  It sure has been a challenageing year with him, but he is doing so well now.  As his Liver Doc says "We will take it when and for how long we can get it"!! I am so tahnkful that he has had teh success that he has from the kasai.  I never thought we would be this far out and be doing so well,.  He has NO problems from the kasai as of right now.  We are still watching his weight gain issues, but we are just taking a backseat and seeing what he is going to do.  He is in teh .6 for his weight now, but that is alright we will get there.  He had his ear tubes placed on his birthday unfortualtely!!! We said it would be ok as we had his party the day before and we wanted to get it done as soon as we could so we could get off the meds.  He had a rough day and night yesterday, but the sitter said he is doing better.  I think he is overtired and that he was tired from the anesthetic and didnt want to give in. I aqm hoping these take care of his ear infections!!! If they dont I think I am going to SCREAM!!!! We go on Thursday for his1 year well check so I will post his stats then.  I am hoping he is 18 pounds!!!! HE cant get to that point it seems.  He has ben at 17.3 for months now!! LOL HE has learned to army crawl and get to the places he wants that way and he is starting to get very very brave and stand without holding your hand.  He has also just learned how to sit up from the lying down position all by huimself.  I know he is behind, but I am just excited he is getting there FINALLY!!! He is a very vry content baby so I think that is why he is not doing some of teh things he should be.  HE will sit and just wantch everything and take it all in.  I would like to say thanks to everyone for their prayers and support though this.  I am counting my blessings on how well he really is doing!!!! Thanks everyone!!!!!!!!!!!!!

Ears Ears Ears...nothing but trouble!!!!

Well here we are with our 5th ear infection sine February 16!!!  I feel terrible for the little guy!! He has been through so much already why cant he catch a break? We have an appointment with an ENT on April 27, which cant get here soon enough!!! He has been on 5 different antibiotics and they work to clear the infection but it come back within a week of being off them.  I am starting to wonder if this has something to do with him not being on the bactrim?  None of this started until he came off the bactrim, so i was wondering if that had something to do with it? I will be asking the ENT what his thoughts are on teh 27th.  I am so hoping that we see him the the 27th then they say yes lets schedule the surgery and it can be done the followng week so my litlte man can get some relief.  He hasnt had a break his whole first year of life it seems.  Although the kasai is working beautifully right now so I guess that is a break he got.  So we will see what they say on the 27th then go from there.  He is also tongue tied so they will be clipping his tongue at some point.  I am hoping that they can do that when and if they do the tubes.  As of yesterday he has only gained 7 ounces since February 2 so not to much and has dropped to the .5 for his weight?! Not sure why he cant seem to gain but we will be hoping the tubes will be the fix and he will start to chunk up and sprout up!!!   I talked to the ped yesterday about it and she said that she is hoping that he will fatten up and sprout once the tubes are in place.  She siad he is still gaining and growing just evry very slowly so we will see what he does int eh up coming appontments and then go from tehre.  We see GI June 19 so I am going to try to do everything in my power to get him to gain gain gain and grow grow grow!! LOL I am sad to say that he will be a year old in less then 2 weeks :( I cant believe that he will be a year old?! Where had the time gone?! It sure has flown by!!! O-well I guess that is life!! LOL I will update later once we know what is going on with his ears in the upcoming week.

9 Month Liver Check-up

WOW what a 9 months it has been.  We went to the St. Louis Childrens Hospital on Tuesday, March 20, 2012 for some follow up appointments.  prior to my appointments with the specialist we had to have a blood draw and an ultrasound completed.  So we got there about 8:15 am and had the blood drawn then went downstairs to have the ultrasound done.  Man did Coltyn NOT like the ultrasound or blood draw for that matter!!! O-well we got it all done then we went up to the 10th floor to see if there were any nurses that had taken care of him there and we did get to see them.  They said they couldnt believe how healthy he lookd and how big he has gotten.  I was very happy that we got to see them.  Then we decided to go out to the rooftop garden to kill a little more time.  Coltyn LOVED that place when he was in the hospital.  He liked anything but the room.  So when we could get out we did.  Anyways then came the time for his appointments.......... I was so nervous that we were going to get bad news, but Dr. Turmelle was the first one to come in and see him and she said that he looks GREAT and that he was her model patient, she wished all her BA kiddos looked like this.  SHe said by looking at his labs and ultrasound you wouldnt know he had BA.  The kasai is working wonders for him at the moment.  She also said we will take it when we can get it.  I was relieved to hear this but also I know that it can change in no time.  I am hoping that things stay like this but also I realize they more then likely wont.  Then Dr. Dillion came in and said how well he looked.  The only thing that they are a little concerned about is his weight gain, he went from the 5% down to the 1% for this.  Dr. T did say we will see what happens in June when we come back and then go from there.  She said we really couldnt use the last 3 months as a guide cause Coltyn has been sick with 3 ear infections since the end of January.  So we are talking tubes here very very soon I think.  So all in all we had a GREAT check up and I am so happy for that!!! THANK YOU GOD!!!!

I am having a little trouble here lately grasping why GOD has chosen Coltyn to do so well with the kasai and not all the other babies out tehre that are struggling to make it.  I just sit and think then I cry a little cause I just wonder why he chose Coltyn?! I am blessed dont get me wrong but why is he doing so well?! That is the question I often ask myself.  I just feel awful when I see all the posts out there about the kiddos that are being transplanted and think why are we so lucky?! I dont even want to post on the LIVEr group how well Coltyn is doing casue I feel awful!!! O-well I guess this is soemthing that I will have to overcome and learn to deal with.  We go back June 19, 2012  to repeat all the testing to see how he is doing then!!!! Until then we are just going to enjoy the summer and the beautiful weather!!!!

9 Months Post Kasai

WOW it has been 9 months since kasai to the day!!! I cant believe that is has been that long already!!! I remember that day as if it was yesterday. AWFUL AWFUL!!! I was a nervous reck and didnt eat all day long cause I thought if he cant eat neither can I.  All i wanted to do was sit and cry but I had my wonderful husband and family there to support me and help me through it.  I was so scared that we were going to lose him and that he was to little to be going through this, but the nurses and doctors knew how to put my mind at ease, well a ltitle. I was still so scared for my little guy.  I just cried when I saw him after surgery cause there was nothing that I could do for him.  The nurse in PICU told me that I needed to take a break and that he was going to be fine but I wouldnt.  Thankfully my mom stayed that night with us so she came in teh room with him so i could go rest a little.  I felt so sick that night cause I didnt eat and had myself so nervous and scared all day long.  I felt awfu leavingmy daughter that had just turned 2 before Coltyn was born and NEVER stayed a night away from until Coltyn was born then to throw this on top of it was just horrible, but we made it and Coltyn is doing amazing.  I am soooooo happy that he is doing so well. I thank god EVERY day for giving him to me and giving me the strength to get through this.  It has truely made our family stronger and appreciate things way more then we did.  We go back to see the surgeon and the GI docs on Tuesday, March 20, 2012.  I am sooo nervous that they are going to say that something is wrong just because thinsg have gone so smooth.  I will update after the appointments: Gi, Surgeon, Ultrasound, and Bloodwork. 
 

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.

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. 

Being stubborn

Ok so I took Coltyn to the ped yesterday becuase he has now decided that he is not going to take much formula in a days time.  He should be taking 24-30 ounces a day and he is at 12-15 on a good day.  He started that when i gave him a sip of my milk. OOPS I thought that maybe he had an ear infection and that was why he wouldnt taket eh bottles?! But nope he is good to go just being stubborn.  The ped did tell me to try a sippy cup and see if that helps, she thought maybe he was wanting to be a big boy and not want the bottle anymore.  So we are trying that to see if this helps.  He is eating like a pig with the solid food though.  He is eating at least 2 jars of food and most times at dinner another half a jar if not a whoel one.  The ped did say that was a good thing but we needed to get fluids in him because oherwise he will become dehydrated.  She said even water would be something to prevnt dehydration.  We weighed him and I am happy to say that at 9 motnhs old he has finally DOUBLED his birth weight!!!! Yeah I said it he has DOUBLED his birth weight!!!!!  He is currently 16 pounds and 12 ounces!! HE still isnt gaining very fast but he is gaining so that is all that matter to me!! He did go back up to the 4% for his weight this time.  So we will see how he is doing next week Thursday when he goes to the ped for his 9 month well check.  If he is loosing weight cause of not taking formula then we will have to figure out a new plan.  So for now we are holding on and playing the waiting game until next week unless he gets dehydrated. 

7 Months post Kasai

So Coltyn is 7 months post kasai!!! WOW my how time flies.  He is still doing really well.  We have noticed that his 2 bottm teeth that have come in went from white to a grayish color.  We talked with GI about this and they told us that it is from his bili levels being so high when he was developing them.  Hopefully his permanent teeth wont be like this.  We are about to end his antibiotic this week so it is kind of nerve racking for me as I dont wat him to get sick with Cholongitis.  If he gets this we will be back in the hospital and we are on a roll right now of 3 months in a row out of the hospital!!! We will see how it goes.  Other then this he is a normal 8 month old.  He is still not crawling but will walk all over the place in his walker.  Over time I am sure this will come. He LOVES his big sister.  She can get him laughing no matter what it is she is doing. I LOVE my kiddos!!!!

Update

So it has been 4 weeks since Coltyn has been t the doc and he did start last week with lighter colored stools for 2 days so we decided to call GI and they said to watch him over the weekend and told me things to watch for: big belly, fever, not eating, and jaundice.  Well none of that happened and as of Sunday he was back to regular color!!!! Very happy about that.  I also took him to get his weight checked as I dont think he is gaining very much, and I was right.  He was only up 8 ounces from his last appointments with GI.  He went from the 6% to the 3%.  The ped said she was not to concerned and that we will just wait it out and see how he does when he comes in for his 9 month checkup in Februray.  He went from 15.11 to 16.3!!! He still has not doubled his birth weight!!! O-well I am ok as long as he is gaining and not losing!!! He is still taking his antibiotic until we are out which will be here in about 1-2 weeks then we will see how things go without it.  So things are going pretty good, just take 1 day at a time.