Adriana has been fine lately nothing new with her, she did start back on er 2 week cycle of Flagyl. Hoping to increase her food, she has been on 26ml/hour now for some time. After her 2 week course of Flagyl I was able to advance her to 27 and she did put out 100ml more than they want to see but I am going to give her a few days and recheck output to see if comes down. Other than that she will have a 2 week break from flagyl and back on, I really think this Flagyl will help advance her feeds, well hope so. I have not had a crazy time with her ostomy and leaky bags, everything has gone good since I switched her bags to a different one, but now the gtube is driving us crazy. It has been leaking too much and she scratches it which makes it bleed and she gets very pink skin around the gtube site. I have been putting a barrier on the skin which is helping with the redness but thats it. Adriana just tuggs on it and its very hard to keep her hands off. We did have a GI appt this tuesday. All went well, she did start to gain weight again and we will just keep doing the same thing and try to advance her feeds. May I add she is takeing much more orally, she drinks much more water now and does not gag at all. She will put food in her mouth and spit it out alone without gagging. She like sucking on lolipops and candy oh and choloclate, all the no no's for her. She is a happy 2 year old.

Adriana's birthday was March 6, she was inpatient at the hospital but had a great birthday. She turned 2 and was loving the shiny candles on her cake. She even blew them out with a little help from dad of course. She was able to keep her line and come home on the 7th with a 10 day course of penicillin, she was on Vanco but her bug was not as sensible to it as penicillin. She had lactabacillus which we are still not sure when it came from. As of now she just finished her antibiotics 2 days ago which mean no more waking up in the middle of the night to run them. It feels nice to just wake up once to empty ostomy bag and change diaper, my usual. They had told us that if Adriana did not get a neg she would need to get the line pulled because as it seemed they were not able to clear her line. That same day she had a neg and it stayed Neg for 5 days thank god, meaning most likely her line cleared up. We were glad we were able to keep her line and life goes on. Nothing new with her as of right now, she is doing a little more cruising through the house and is getting ready to walk , but wont yet let go. She will stand all by herself though and is starting to say more works and know where her eyes and ears and mouth is. She is advancing as she should be but of course behind. Adriana is a happy 2 year old girl that loves life and holds no grudges against anyone. She is very kind and loveing and at times just wants to cuddle next to you than play with her toys or explore the house. I am proud to say I am a her mother, she is not easy to care for and requires much time but at the end it is all worth while to know she is here with me and of course enjoying every minute she has. Pics will be posted soon

lactabacillus (line infection)

Since our last post Adriana was doing fine, we did get admitted, she has a line infection... lactabacillus ugh meaning she has some what of a leaky gut since it is good bacteria that is in the small bowel. They have yet to get a negative culture, tuesdays is negative so far. If it stays neg she can keep her line but if it turns positive her line has to go. Its a waiting game right now, this line has been in since 09 please cross your fingers so she can keep her line. I will keep you updated as the days go by. By the way sunday is her 2nd birthday and she will be inpatient, why cant life just be fair?????

Since our last post Adriana started to run a fever so we had to take her in, we were out in 2 days she tested positive for influenza A. It w=felt like a longer stay with Adriana running high fevers all during out stay, the only thing that kept her comfortable was Tylenol and ibuprofen around the clock. She came home with both of those and some tamiflu for 5 days. After a week she felt better and got back to normal, she has been doing fine since then. I was not able to play with her feeds since she was putting out more when she was sick with the flu, as takeing meds would not have been the time to increase feeds. I increased her feeds last night to 26 and hopefully she will tolerate it, fingers crossed. It has been a while now that she has just been at 25ml/ hour for 20 hours now. I think its time to keep moving on up but of course its not up to me. That is the only change, she has been gaining weight but they had also bumped her dextrose at our last visit since her weight was flat. Adriana is my little miracle, she has something new to chow me daily and loves to talk, says everything you say and more. She does not walk but crawls like a crazy person as well as cruise. She will soon let go and just take off, then nothing will hold her back and we will have problems. The good thing is she only runs her tpn/lipids for 12 hours so during the night only and comes off in the AM.

Adriana has been doing good, she did have her GI appt not so long ago. Her next one will not be untill March 2 days after her 2nd birthday. Adriana is doing good, she has had no line infections lately and she has been able to stay out of the hospital. Her liver is doing good and healthy no problem with that, her weight has been a little flat for a few months now. They decided to go up on her dextrose just a little, that should help her gain weight but at a slow pace as they want her to. Adriana is not yet walking by herself but does stand of course holding things and cruises while holding on to something. She will walk through the house with her walker but not yet so confident to let go and do it all by herself. In no time she will be walking, she is a very happy baby. She drinks water which she enjoys doing and licking lolly pops which she also enjoys doing. She does not yet eat but does try certain foods and tastes them as well. She will only accept water, anything else she iwll not drink. She enjoys exploreing arount the house and loooking for something to get into. She has learned to open all drawers and at time I find myself picking up clothes around the house that she has decided to pull out. She also loves to meet new people and all the attention she gets. She loves to say Mio for everything, meaning it is all hers. She does share her toys and loves to play with other children.

Adriana is still at 25cc a hour for 20 hours right not but her GI decided to start her on Flagyl. Its suppose to treat BO if she were to trully have any. She has never showed any sign that she may have it but her Gi feels that that might be the reason why we have not been able to advance her feeds. Adrianas last day on Flagyl will be today and then tomm I will check her output and then advance to 26 and see how she does. Cross your fingers and hopefully we go up from there, we have been lingering at 25 for a few months now and I would love to see a new number on our machine. Adriana is doing well other than that, she has not had any issues with anything. I ahve been treating some angry granulation tissue under her gt tube but it has gotten better and as long as being treated it seems to stay under control which is always good. Besides all of her complications Adriana loves life, she enjoys bath time with her Dora mat and ridding in the car in her ar seat. She will always point out the window meaning she wants out or say beep beep meaning she wants to ride in the car. If she seems me or her dad getting ready she gets excited because she thinks we are headed out the door. I will add pics of Adriana as soon As I figure out how to get it working again.

new years

We had a very good Christmas this year, Adriana loved it and watching her was priceless. She enjoyed playing with all the kids and the comotion that was going on. She did not go to bed untill 2:30 am. She enjoyed her gifts and toys of course, she had a favorite one. Her drums, she enjoys banging on things. Adriana is crawling like crazy, she crawls very fast, she also pulls herself up to standing. She enjoys to turn off and on the TV and changing the channel, she also found a new hobby which is opening and closing the drawers. She doesnt yet pull anything out just opens and closes. She can also walk independently with her walker, she walks with it. She will be walking soon and then we will have trouble. lol..... Adriana carries her backpack with her milk which she hates wearing at times, she screams and complains when I am going to put it on her. She doesnt mind other times, she is only connected 20 hours on her feeds so has 4 hours free with nothing on her back. She runs her TPN for 12 hours so only at night when she sleeps. Life is getting easier with Adriana and of course I have this short gut thing down so I know what to do in case of any emergency. Adriana is healthy well for being a short gut kid of course she is medically fragile. I enjoy every moment with her but at times she does drive me crazy. She is a very sweet little girl who loves to be loved and show love as well. She enjoys sleeping on daddies tummy and being hugged and kissed at all times. She is very undependent and enjoys doing many things for her self with no help. She laughs and giggles for no reason at times but it brightens up your day if you feel bad. She has no idea what is going on with her but at the same time she is enjoying her life and nothing puts her down. She may be small but filled with life, she loves bath time and enjoys splashing in the water untill her skin gets prunny and splashes half the water out of the tub. I try to live our life normal but at times its just a little hard, especially when she gets infections or gets sick for any reason. Everyone has a purpose in life and I am not sure what Adrianas is but I enjoy every moment with her. She can turn my frown upside down very quickly by just making funny faces at me or smiling. Adrianas 2nd birthday is coming up, March 6th, i cant believe it. 2 years, of course the first year was the hardest hopefully the rest arent as hard. I will post pics

update

As you can tell by the pictures Adriana has been doing fairly well, we wont be seeing her GI untill Jan. We last saw him oct so that means 2 months without Drs. Adriana is still on 25ccs on her feeds and has been haveing a hrad time advancing, she seems to really be stuck. I bump her to 26 and she puts out more than she should, I also just stopped her benefiber and started to add something else to her milk. I am hopeing this will help with the absorption and lowering her output so I can continue to increase her feeds. It is hemp protein + fiber, she did start to put out a little more than usual on the first day but it is always normal with her when you make a change. I am going to give her a few days on it and see how she does. She seems to be doing fine but I have yet to measure her output and see where she stands right now, that will either tell me I can advance on her feeds or we just have to stay at 25 a little longer. Adriana is a pro at crawling and even likes to kick it in turbo gear at times and flies through the house with her backpack on. She does not mind wearing it and it doesnt seem to hold her back from doing anything. She enjoys takeing down the picture frames I have in the living room and makeing a mess right after I clean. She of course is just a nomal baby I dont think she can get more normal than she is. Adriana can pull herself to standing position and takes steps when holding to things, she is just scared to let go, I am sure as she lets go she will realize she can walk. Hopefuly soon but not too soon I am already chasing her around the house as is. She loves to sit in front of the heater as she knows she is not allowed but does it anyways, once I get up and go get her she starts to crawl in turbo gear and just laughs. Crazy girl.... She babbles like crazy and seems to keep a conversation but of course mostly everything she says does not make sense just a ton of bable. She does say words like mama, papa, bebe, wow wow is dog for her, baby, hi, bye, buh bye those are the most commom ones she says. We will hopefully soon get our christmas tree and I am sure she will just try to get under that as well..... she will love the lights tho, she loves to look outside since mostly all of our neighboord have some kind of decorations on there houses, they all have lights and she loves looking at them when it is dark, besides her just being nosey like she is. Our Goal is to stay out of the hospital and hopefully she doesnt catch any bugs... I would just like a normal holiday.. So lets see what happens...