Day +195 Tomorrow is a NEW YEAR!!!!!

My Dad and Alicia are both Survivors!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

There is less than 12 hours til 2009. I am sitting here remembering all that my family and I have been through this past year. I believe more has happened in our lives in 2008 than any other year.

Although there has been many worries and stressful times, we also have SO MUCH to be thankful for. First and foremost Alicia has faught and won this battle of her Transplant. She has came so far and is truely my HERO. I am very thankful for the many memories Alicia and I have shared this past 7 months in Cincinnati.

I am also Thankful for the Birth of my last Grandchild in 2008. Jayshon is very special to me, although I have not got to spend much time with him in 2008 I plan to smother both of my grandsons and make up for all of the lost time in 2009.

I am also Thankful for the strong woman my daughter has became. Erika has truly followed in my footsteps and I am so very proud of her. She has comprimised so much and I know how much she misses her daughter. Alicia and Erika have such a special bond that even I can not compare to. I am Thankful for the wonderful man and Father Anshon has been to her and my grandkids as well. He has made my Daughter a strong independant woman and I Thank him for that.

I did not plan on bringing in the New Year in the hospital but I will not let that spoil my confidence that 2009 will be a Great Year for My Family.

Alicia ate a whole bowl of cereal last night. I know that does not sound like much but that is the first thing she has ate in 8 days. I was so proud of her. They started her on TPN which is an IV nutrition. She will be on that around the clock until she maintains her weight. Dr Davies said in rounds this morning that she will probably give her tummy one more day of rest and start her back on NG feeds tomorrow. I just hope she will tolerate them and not throw them up. Dr Davies also changed some of her meds back to IV from oral since she is having runny stools. She said if all goes well than we should be out of here on Monday. It is so different being in here this time because Alicia is not sick, she just will not eat so she has all of her energy and keeping her occupied is a task in its self. Just today we have put together seven puzzles, painted two pictures, gave Theo his meds, and dressed Bubba and baby jayshon (those are her two dolls). Now she is down stairs at Therapy will Jill and Jessica. She was soooo excited to see them and Stacy as well.

Here are some pictures I promised on her last post.............................................................

Alicia takes very good care of Theo. He has been here with her since she was admitted on Monday.




This is of her on her third puzzle today......................................................


Here is one of her and her bag ready to head for HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

This is the very very very very small plane we got home in. I want to say a special thank you to Wings of Hope for making Alicia's Christmas the best one ever. If it wasn't for them we would not of made it home. They are a wonderful group of people and they made us feel very special. They had Mcdonalds waiting for us in St Louis while they re-fueled. ( Alicia did not eat it but I sure did!!!) I owe them so much for what they did for us.

This one is of Alicia on the plane on our way home.......................................................................

This is of Alicia and the Nurse who flew home with us.........................................................

Erika and Anshon on Christmas day.............................................................................

This is my Nephew C.J and his two children, the baby, Chrishelle, is the newest member of our family, she was born while we were gone and she was named after her dad and ME!!!!!!!!!!!

Alicia with her two favorite cousins, Kristian and Cassie...............................................

This is one of Alicia and her Great Grandma, my moms Mother. ..........................................

This picture is very special to me it is of Alicia and my Dad. I was soooo happy to see him. When we first left in May for transplant I made him promise me that he would take care of himself while I was gone. When my uncle died earlier this year I was so worried about him as well but he has kept his promise to me!!!!!!!!!!!!!!!!!!!!!!!!!!

This one was taken Christmas Eve of me and my two sisters, Denise and Kelli with our Dad. We had not had a picture with all three of us and my dad in a long time......................................

And last but not least Alicia had us all together, she was so Happy to have me, Denise and Mommy all in one room again!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

HAPPY NEW YEARS TO EVERYONE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Day +193

OK where should I start. First I should let everyone know that we are once again inpatient. Alicia was admitted this afternoon after her Day Hospital visit. I was already expecting it so I am not totally freaking out. We are in A5south room 547.


Christmas was WONDERFUL!!!!!!!!!!!!!!!!!!!!!!!!!!! Alicia had the best Christmas ever. It started when we landed in Wichita Monday an a lot of my family and friends where there jumping up and down and clapping for Alicia. She was smiling from ear to ear. My dad was also at the Airport, who I was soooooo very happy to see. He has not been in good health for a while but he looked so great to me. Denise was there and so was my very good friend Tracy and her children. The best of all was Erika surprised the both of us also. I was sooooo happy to see everyone. It felt so good.


We went from the Airport to Denise's and that is where Alicia stayed while Denise, Kelli, my oldest sister and I went shopping. I got all of my grand kids Christmas gifts before my brother in law called to tell me Alicia was throwing up.


We decided to stay at Erika's instead of a Hotel so Alicia and her Mommy could spend a lot of time together and I could save money. The first night we were there Alicia practically threw up all night. The next day (which was my Birthday Alicia had a pretty good day but into the evening and all through the next day Alicia threw up most of her feeds and meds and started running a low grade fever. I talked to the Doc on call here in Cincinnati and they pretty much told me that if she did not have a fever than to just watch her. Her cough was still getting worse and so was her pooping. But her spirits and attitude was AWESOME. She ate up all of the time she could with Mommy and Daddy and Ne Ne, and Lil Anshon was so glad his sister was there. She loved to show Mommy how to give her medicine to her and she even checked Ne Ne's blood sugar a couple of times. She got so many gifts and she loved each and everyone of them. But the whole time I was watching her very close and I knew what was happening.


Alicia was not eating anything. And what she would eat, or I was giving her through her tube she was throwing up. I kept in contact with the Docs up here and they were still OK as long as there was no fever which there wasn't. Saturday was the day I decided to take her in to be check out. Erika took her pull up off of her which we have been having to keep one on due to the runny stools. But this one had traces of blood in it.


We took her to our local ER which is another horror story all by its self. They did a chest x-ray, Cbc, and another nasal swab, and decided she was OK to fly back to Cincinnati the next morning.


This morning she still had not ate anything, which will make it seven days without any food. The plan is to start her back on Tpn to get nutrition inside of her while they get her to start being able to tolerate her feeds and put her weight back on. I am not for sure how long we will be here, hopefully Alicia will start eating soon.


I have pictures from Christmas and I promise to post them as soon as I get them downloaded. Thank you to Everyone for making Alicia's Christmas special!!!!!!!!!!!!!!!!!!!!!!!

Day +186

Hello everyone, I just wanted to let everyone know we are about to leave for HOME!!!!!!!!!!!!!!!!! I didn't sleep much last night, or all weekend, I am soooooooooooooooooo excited. I packed and unpacked a total of twelve times. LOL


Alicia is up early also. The first thing she said when she opened her eyes was : I go see Mommy and Daddy now?" I was so happy to finally say YES. Then she of course wanted to know if she was going to see Ne Ne today.


Her cough seems to be getting better, I just hope everything goes well and she is all better by the time we get back.


I will let everyone know all of the details when I get back. Thank you everyone so much.

Day +183

Well today has been a very long and stressful day. It started off with Day Hospital. After not sleeping well again last night I got up and too a shower and got Alicia ready to go across the street for her infusion at Day Hospital. When we walked out side it was raining so I had to put my only umbrella over Alicia and I was soaked by the time we got there. When we walked in they looKed at us crazy because our appt was not until 1:30pm and it was 8:30 in the morning. I am so glad they found a room for us so I did not have to take Alicia back out in the room. Of course the sun was shining by the time we left.



Everything went well with the infusion and we came back and laid down for a nap. I was woke by a call from Dotty with Wings of Hope who is flying us home for Christmas. She told me that the Chief Pilot in charge was very worried about the weather forecast for Tuesday between here and Kansas and was scared we would not be able to go unless we left on Monday instead of Tuesday. This was already so late in the afternoon so I started freaking and making calls. Alicia was supposed to have her IVIG infusion on Monday and her dressing changed on her pic line before we left Tuesday plus I did not have enough medical supplies to last a whole week at home, they were scheduled to be delivered on Monday afternoon.


In the mist of making calls to try to arrange her IVIG and dressing changed on Sunday as inpatient and checking to see it I could get her supplies delivered earlier I received a call from Paula, our Nurse Practitioner and she told me that a test came back from the horrible nasal wash Alicia had done Wednesday and it was positive for the RSV Virus. GREAT!!!!!!!!!!!!!!!!!! She said I needed to bring Alicia over right away and she was going to receive an injection that should help. So I bundled her up once again and we went back to the clinic for a shot.


They forgot to tell me that this shot entailed a HUGE needle and that she would have 2, one in each leg. I told them that I wanted them done at the same time because I knew if they didn't the second one would be impossible for Alicia to sit through. They put numbing cream on both legs and two nurses gave the shots at once. Alicia screamed which she never does during shots.


Then it was all up hill from there. Michelle our Nurse coordinator came in and said that Dr Davies said Alicia would not need IVIG now due to the injections had it in them and that they could change her pic dressing while we were there and that we could still go home even if it was Monday instead of Tuesday. So now I am running around lie a chicken with my head cut off, washing clothes, packing , cleaning and getting ready to leave in 2 days. Her medical supplies arrived a few hours ago so it looks like the Lord is behind us 100%

WE WILL BE HOME FOR CHRISTMAS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

DaY +181

Everything here is still about the same with Alicia. I am very very tired, I have not been sleeping well the past nights with Alicia being sick. Last night was very bad. She coughed most of the night, so between the coughing, between coughing, blowing her nose and taking her temp I had decided when we woke up I was taking her to get checked out by Doctor Davies. Dr Davies listened to her and agreed that her lungs are clear but she ordered a lot of tests which one was just horrible. She wanted a nasal wash and swab and Alicia did not like that idea at all. It was even worse than having the tube put in her nose. It took five nurses to hold her down and all I could hear was Alicia yelling that she could not see her Mee-Ma. I lost it. I told them to just leave her alone, she has had enough but luckily they had got enough fluid back for the test. I just picked her up and held her sooo tight. I feel so sorry for everything she is going through. I just wish it was me and not her.


After the nasal wash and swab and cultures they sent us down for a chest x-ray. So far everything is coming back good. The x-ray showed her chest and lungs clear, the only bad thing was the x-ray showed that her Ng tube was barely in her stomach so I had to push it in another three inches which I did myself.


So it looks like we are still clear for leaving Tuesday for home. Only 5 days left on Alicia's chart. I am keeping her confined to the room til we leave except for Friday and Monday which she will have to be in Day Hospital for infusions. Hopefully this all will clear by then!!!!!!!!!!!!!!!


Please keep Alicia in your prayers for this nasty cold to pass before we leave!!!!! Thank you all so very much, without your support I would not be able to endure any more.

Day +180

O My I have been without the Internet now for three days. It actually just came but on minutes ago!!!!!!!!!!!!!!!!!!!!!!!!!!!!

it is snowing here in Cincinnati, It is so pretty the flakes are so big. Erika called today to let me know it was snowing there in Kansas also. I sure hope it stops in both places by next week Alicia only has six more days left on her chart!!!!!!!!!!!!!!!!!!!!!!!!!!!


I have been biting my nails for the last two days. Alicia started coughing a couple of days ago and now her nose is running faster than Speed McQueen. I have been taking her temp every other hour and the docs have all listened to her and they all say her lungs are clear and it is just upper nasal so hopefully it will take its course and be gone in a week!!!!!!!!!!!!! It just has to be!!!!!!!!!!!!!!!!!!! She has been sleeping all afternoon and the Docs say that is the best and I am keeping her in the room as much as possible. Please pray that it goes away quick and it does not stop us from getting home for Christmas!!!!!!!!!


She also had a Cardiology appt today and they started talking about the hole she has in her heart. I was like whoa!!!!!!!!!!!!!!!!!!!!!! slow down, what hole!!!!!!!!!!!!!!!!!!!! The Doc looked at me strange and said the one that showed up on the Echo when she was inpatient. I was like, well I guess it was not that important because no one To me told me!!!!!!!!!!!! He told me it was very small and he was not to concerned at this point with her other issues and they will just keep a close eye on it and follow her for a while.


Hopefully the Internet stays working here and I will update after our appt on Friday. Please pray Alicia's cold does not get any worse!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Day +176

OK I am a little bumbed out again!!!!!!!!!!!!!!!!! Every thing is going OK, Alicia is still doing good I just got some news today that I did not want to hear. Dr Davies came in today while we were in Day Hospital to examine Alicia, she was very pleased with the way she is doing so I asked the "question". I was thinking I would wait until we got back from going home for Christmas before I started asking but I felt I had the moment today when she was pleased with Alicia's progress so I popped the question. I said " so when do you think we can plan on going home for good" and her reply was, " O i would thin the end of February was a good guess". NO!!!!!!!!!!!!!!!!!!!!!!!!!!!! that is not what I wanted to hear!!!!!!!!!!!!!!!!!!!!!!! I can live with it though but that is still another 2 months. Her reasoning is that she wants Alicia off of all of the meds she is on connecting to her GVH and off of them for a while to watch her to see if she will flare up again. She wants assured that Alicia's GVH she had will not come back and us be so far away. She said her plan is to have her off of them by the end of January and to watch her for a couple of weeks in February. That will mean we would of been here for NINE months!!!!!!!!!!!!!


I hope the short time we get to spend at home will gain some of my sanity back at least enough to make me last through February. I am soooooooo ready to get back to a "NORMAL" life. Alicia is doing so well so I have faith that the GVH will stay away. I most definitely do not want to jeopardize anything when it come to her. We have both been down such a long and hard road through this transplant and I do not want anything to go wrong. I am not willing to take any chances that will set us back and have to do any of what has already been done over. But on the other hand I did not imagine we would be here for NINE months!!!!!!!!!!!!!!!!!!!!!


We are so excited about going home!!!!!!!!!!!!!!!!!!!! I think I forgot to mention that Alicia only has 10 days left on her chart. We decided not to count the 23rd since we are leaving so early that morning!!!!!!!!!!!! Yes I got the call and we leave Cincinnati at 10 am and will be in Wichita some time around 4pm. They said we might have to stop and refuel once and that would be our only delay. Ne Ne is picking us up, I can not wait to see her again. We have never spent a Birthday apart in such a long while and I am so glad we will get this one together also. I have her all booked up the whole time we are there so I am sure she will be ready for us to leave when it comes time.


I am also so excited to see my Mom and Dad. I have not seen the both of them in seven months. I miss my Mom so much, she is such a great support to me. I have never been away from her this long and I can not wait to see her. I also want to see my nieces and nephews. I have one that was named after me that I have never seen. OK OK I now enough!!!!!!!!!!!!! I am just so excited!!!!!!!!!!!!!!!!!!!!!!!!!!

Day +173

Just a little update to let everyone know that Alicia did fine at Day Hospital today. Her Hbg is getting kinda low so they foresee her needing a transfusion Friday when we are back in. Today it was at 8.1 which is down from 9 on Tuesday. Her platelets dropped a bit also down to 65,000 but they are still holding pretty steady. Good news her wbc came down a bit to 21.89 and Anc to 19.78. I know that is not much but it is moving in the right direction.

Last night Ronald McDonald was back at the Rmh House a long with Santa. They had the Tree lighting ceremony and there were a lot of sponsors here. Alicia had a blast, and she even told Santa what she wanted for Christmas again. Only this time she did not tell him she wanted to go home. I guess she figure he already took care of that and she better get her dibs in for "Real" stuff. I again listened in and this time she told him she want a "Present" for Christmas. She did not say exactly what she wanted only that she wanted to unwrap it and it had to be a "BIG" Present. LOL that just about leaves the door open for anything. She also was on the news again, A gentleman from Duke Energy here picked Alicia out of all of the kids and asked her to help him do the count down to turning on the lights on the tree, so Chip Wood ( the guy from Duke) His son, Ronald McDonald, and Alicia got to hold the wand and count til the lights came on. She told him Thank you so many times.

On the down side it is snowing back home. It is the first snow of the year there so I am kinda missing home a little today. Hopefully it does not snow long and effect our travel date. Did I mention there are only 14 days left on Alicia's chart!!!!!!!!!!!!!!!!!!!!!!! I guess one good thing is though I do not have to worry about anyone riving my car in the snow back home. My 1995 Hunter Green Camaro was totalled yesterday. Erika called me to tell me that my nephew was driving my car yesterday when he turned in front of someone and my whole front end is smashed in. He is OK and not hurt but needless to say I have no car now on top of everything. ( I love you Denise!!!! I will need a personal taxi now when I get there in 14 days ( have I mentioned we will be home two weeks from today!!!!!!!!!!!!)

Thanks everyone for letting me vent. Cory ( my nephew) we are having a sit down talk when I get there LOL.

Day +171

I know one thing for sure!!!!!!!!!!!!!!!!!!!! When you are excited about something, or you are waiting for a time to come, the days go by slower than ever!!!!!!!!!!!!!!!!!!!!!!!!!! It seems like it is taking forever for just one day to go by!!!!!!!!!!!!!!!!!!!!!!!!!!! Alicia is soooooo excited!!!!!!!!!!!!!! we made a chart and she is marking off the days til she gets to go home. After she marks off the day she calls her Mommy an Daddy and Ne Ne and she tells them how many days are left. Actually she calls them about five times a day and tells them, but like I said she is very excited. We still do not have all of the details yet as to when we will be leaving, but I am sure that will come when it gets closer to the time. Did I mention there are only 16 days left on Alicia's chart!!!!!!!!!!!!!!

Fridays hospital visit went very good. The Docs are so impressed by how good Alicia is doing. She is shocking everyone I believe. I just tell them that anything that could of happened to her has already happened so it is all on the good side now. That is what my VERY good group of friends used to tell me when I was having a hard time when we were still inpatient. (You all were right!!!!!) They did have to take her labs twice though. The first one came back that her Hemoglobin was only at four but when they repeated it that was not the case. Her HBG was actually at 9 which was up from the last time. Her Platelets also came up, they were at 79,000. I am so happy that all of her counts are rising by their selves. She has not had to have any transfusions in such a while!!!!!!!!!!!!!!!!!!!! Her Wbc and ANC are still very elevated though. her ANC was at 22.89 and her WBC was at 28.6, they still show no worry to me about these numbers. Her liver numbers are slowly coming down also which is a lot of relief. We are scheduled to be at the hospital on Tuesday for her every other week Imfleximab infusion. Then back on Friday for her Ambison.

I was looking through my pictures and I found one that Alicia had taken with Clifford the Big Red Dog just a year ago, and I was comparing it with the one she took last week here at the RMH and I can not believe how much she has grown. I keep thinking that maybe this one was two year ago. I am sure Denise or Erika will correct me if I am wrong. I thought I would share them with you. The video is still on Cincinnati.com if any one has not seen it.

Thank you again everyone for follow the progress of Alicia and for the many many prayers!!!!!!!!!

oops forgot

I for got to let everyone know that Alicia was on the front page of the Cincinnati Enquirer paper. Clifford the Big Red Dog visited the Ronald McDonald House yesterday and Alicia LOVED Him. The is photos of her dancing with Clifford as well as a video on Cincinnati.com. Just click on the video with the picture of Clifford. It is on the right side of the web site almost at the bottom of the screen.

Day +168

WE ARE GOING HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I got a call today from Wings of Hope and my new best friend "Dotty" said that they are taking care of everything and they are getting us home for Christmas!!!!!!!!!!!!!!!!!!!! I wish I could of went through the phone and gave her a HUGE Hug!!!!!!!!!!!!!!!!!!!!!!!!!! I am sooooo excited. They are taking us all the way to our home town on the 23rd ( my Birthday and the best present ever!!!!!!!!!!!!!!!) and they are bringing us back to Cincinnati on the 27th. I have never rode in a small airplane before and I might say I am kinda nervous.

Alicia is very excited also. She has told every body she has seen today that she is going home to see Mommy and Santa. But I think Denise is the most excited of all. She is making out a schedule of every day we are home. LOL she even called Erika and wanted to know when she wanted penciled in to see Alicia. Erika just laughed at her.

We are going to Day Hospital tomorrow morning so I will update on any news tomorrow evening.

Thank you everyone for so many prayers. GOD IS GREAT!!!!!!!!!!!!!!!!! He heard each and every one of them!!!!!!!!!!!!!!!!!!!!!!!

Day +167

Well we got the Ok today to go home for Christmas for just a few days but now we are having an issue with finding a non-commercial flight to get us there. We have different avenues we are trying so hopefully something will work out. I told Alicia we will jump on Santa's Sleigh if we have to!!!!!

With it being so close to Christmas it will be very hard for us to find a way. I am not going to give up hope though, Alicia wants to go home soooooo very bad!!!!!!!!!!!!!!!

Paula, Alicia's therapist, came today and she is working with Alicia going up and down stairs. She does the going down part pretty good but it is the going up part she has many problems with. She puts all of her weight backwards and no forwards and her legs just are not strong enough yet but with a little work she will over come that as well.

please keep us in your prayers in hopes we find a way home for Christmas and if any one has a Jet parked in their garage let me know!!!!!!!!!!!!!!!!!!!!!!

Day +166

I want to start by saying that I am sorry about the days in between my updates. There really is not much change. I know this is the only way that some of you keep updated on Alicia and once again I apologize.

We still do not have any news to report on coming home for Christmas. Yes I have been pushing to go home, if only for a couple of days, for Christmas. Alicia and I both really do miss home very much so I have been asking if there was any way we could just go home for a few days. Hopefully I will find out if it is even possable by the end of the week. There is not a day that has went by since Denise and Cassie have left that Alicia does not ask if it is time to go home yet. She really misses her Mommy and Daddy and she tells Erika every time she talks to her that her and I are going to fly and come see her and Santa Claus. It breaks my heart every time I hear her say it.

Here Cbc's are about the same. Today her Platelets actually went up more on their own to over 70,000!!!!!!!!!!!!!!!!!!!!!!!!!!! Her White cells are still elevated at 31.78 and her Anc is at 22.45. Her Hbg is holding at 8.5 so we have not had to make a trip to the hospital for blood. She has an appointment Friday for her Ambison infusion so we should know more then.

Thank you everyone for keeping Alicia in your prayers and tonight say one for us that we can come home for Christmas!!!!!!!!!!!!!!!!!!!!!!!!!!!