Day +133

Well it is defiantly not as cold here as it has been in the past couple of days!!!!!!!!! I hope it stays this way at least through tomorrow night for all of the little Trick or Treaters, I hope everyone has a safe and fun Halloween and do a little extra trick or treating for Alicia since she will not be able to this year. The only Trick or Treating Alicia will be doing is at the hospital tomorrow and the RMH. Thanks John, Dianne and Michelle for the Halloween package you sent to Alicia she had so much fun with it!!!!! And thank you George and Anita and everyone from the Church there that sent Alicia the Halloween cards!!!!

She is sitting here now just making a mess of her bed and playing, she loves the Light Bright that Wesley and his Family sent, here is her latest picture.....................

Thanks guys she loves the Light Bright!!!!!!!!!!!!!!!!!!!!!!!!!!

Tuesdays Home Health Visit went really well!!! I really like the nurse "Robin" who comes out to our room every Tuesday and gives Alicia her IVIG. She was done and out of here in 3 hours. She was great and Alicia did very well. Just before Robin arrived Alicia's new therapist"Jim" came. He is Awesome as well. Alicia took to him right away. Usually it takes a minute for Alicia to warm up to you and even more now with everything she has been through but when Jim walked through the door Alicia just started chattering away. The really hit it off. He is really working with Alicia with her Fine Motor skills. He will be here every Tuesday morning as well. Alicia also had her 2nd session with Mrs Ellie her tutor here at the RMH Tuesday. Mrs Ellie said Alicia is very smart, she could put her numbers in order all the way to 50 and probably even higher but that is where they stopped at. Alicia even knew everyone of her shapes and letters and could read and sign everything. Alicia is also having class now with Mrs Ellie on Thursday mornings, here is a few pictures of her in Mrs Ellies room.......................

Thursday morning before her Tutoring session she also had to have a quick visit from another Home Nurse. We found out Wednesday in Day Hospital that Alicia's Electrolytes are all out of whack again so the changed the elements in her nightly fluid to raise her Phosphate and Magnesium and gave her more Calcium and Potassium additives. They wanted to draw blood this morning to do tests (Renal) I will find out the results of those tomorrow in Day Hospital.

Wednesdays visit in Day Hospital was a very long one. The first nurse we had knew nothing and I mean NOTHING. I guess it was her first day there, ( i felt so sorry for her) but of course she had to have the most orneriest one ( Alicia) anyway by 11 am Alicia had only had her pre-meds and no infusion yet which didn't start til afternoon because they had waited to long and had to pre-med her again. We got there at 8:30 am and was there til after 5pm. Thank goodness for the Special visitor who came to see Alicia and got to spend all day with her. I give everyone one guess who that was.....................

Yes THEO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Alicia was so happy when Amy with Child life came in with Him!!!!!!!!!!!!!!!!!!! And it helped so much seeming how Alicia even had to get a new NG tube put in Wednesday as well. THANKS AMY!!!!!!!!!!!!!!!!!!!!!!!!!

Tomorrow will be a very long day as well in Day Hospital. I for sure have a meeting with Dr Davies as I got a call today to conform that. Alicia also will have to have her IVIG, Ambison and probably Platelets, which she did not have to get Platelets on Wednesday as we all expected. Her Platelet count only went down to 31,000 from 33,000 from Monday. She has went a week today without needing Platelets!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Her Wbc although went up even more and her HBG went down so she might need Red Blood tomorrow as well so needless to say we will be having a long day tomorrow. hat is OK though because all of us who had a Transplant together " The Fabulous 6" should all be there and the kids will all be dressed up. I think one or two of our 6 will be missing but I know a lot of us will be there.

Well Alicia is done cooking her Play Dough Pizza so it is time for my dinner ( Thanks a lot Sis, I will save the mess for when you get here )

Only 15 days til I get to see my GRANDSONS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Day +130

Its a VERY cold day here in Cincinnati. I had to bundle Alicia up real tight this morning for our trip to the Hospital. Winter is definatly very close.

Everything went well during her Clinic visit. We didn't get to see Dr Davies, Dr Joedel came and seen Alicia and told us that Dr Davies would be there with us on Friday. She did tell me that they all have been discussing the issue with Alicia's elevated Wbc and that they still are not to concerned about it seeming that she is still 100% donor cells. Today her Wbc was at 26.7. Once again I am a little frustrated. There has to be a reason it is this high, either good or bad there still has to be a reason. Hopefully when and if I get to see Dr Davies I will get some answers.

Tomorrow is another busy day. But at least we will not have to go out in the weather. The Home health nurse is coming here to the rmh to do Alicia's IVIG infusion. She also is having her first visit from Jim, her new OT therapist. I am glad she will be getting some therapy now, she is alot stronger but she still has alot to work on!!!!

Alicia also has been getting tutored once a week from a teacher here at the Rmh. Tomorrow she will be working with her in the morning before her other visits. Last week she gave her some home work and she was so happy tonight when I made her sit down and do it. She had to practice writing her name which she already does very well thanks to Mrs Allison, Alicia's teacher she has been with for the past two years.

Alicia also got a call today from Mrs Allison. She has been talking about her all day now since she talked to her this morning. Alicia has asked me a million times today to take her to school on the Bus, which means to her old school back home. Mrs Allison is the one who has taught Alicia all of her sign language. Thanks for the call Jill!!!!!!!!!!!!!!!!!!!!!!!!!!!

Wednesday will also be another busy day for her. We have to be in Day Hospital for Platelets, they were at 33,000 this morning so it is most definite that she will need them Wednesday along with her Infleximeb infusion for her GVHD. Hopefully Thursday we will get to ourselves and then back to Day Hospital Friday for another round of IVIG and Ambison.

I can not believe it is almost November. The Holidays are just right around the corner. Alicia will be 6yr old in 22 days. My best friend is getting so big.

A couple of friends have already started sending cards to her, so now she is telling everyone it is almost her Birthday...... Every year I try to make her Birthday special but I am sure this one will be different since she will be away from home. I am sooooo glad her Mommy and Daddy and brothers will be here to celebrate it with her. We are planning on having a party for her on Sunday the 16th at 3pm if anyone just happens to be in Cincinnati ( yeah right ) She loves to get mail so My Family and friends are going to ask everyone to spread the word during the week of her Birthday if they will send a card to her. I so hope she gets alot I love to see her smile lately. If anyone can send one the address is Alicia Reed c/o RMH, 350 Erkenbrecher ave Cincinnati Oh 45229. Thanks!!!!!!!!!!!!!!!!!!!!!

Day +127 ( I think)

Well it is a very rainy and cold day here in Cincinnati. We were very lucky to get everything done and all of her infusions in Day Hospital yesterday so we did not have to go over today. We have had a nice day in the room just hanging out and playing. Alicia has taken my blood pressure ten times today and my temp about twenty times. She always wants to play doctor ( i wonder why) Now she is hooking her baby up to the line her fluids are on after I unhook her from it. I am so glad she has not tried to give me a Central line. She asks about Theo all the time now since she has not got to see him since she got out of the hospital. Now she has a doll named Katie that she gives meds to all of the time. Here is a picture of poor Katie............

Those are band aides all over her legs, and she has a central line Alicia gave her but you can not see it very well in the picture but you can see the lines hooked up to it. Katie was a gift from Reid and Abby, If Abby could only see Katie now LOL!!!!!!!!!!!!!!!!!!

By the way Alicia dressed herself today. As I am writing I can hear Alicia walking in here pushing here pole. She has learned how to move that thing anywhere she wants it to go. I am surprised she has not tried to unhook herself!!!!!!!!!!!!!!!!!!

I wanted to Thank a very special friend for making Alicia soooo happy the other day. Her name is Tricia, she is the lady that Reid and Abby are staying with. She bought Alicia all kinds of things and Alicia loves it. She got her a Dora doll and clothes and all kinds of accessories, and the cutest Dora outfit and coat and skirts and shirts and a rolling suitcase to carry it all in. Tricia opened her house to Abby to stay after her Transplant without even knowing them. She is honestly an Angel from God I believe. Thank you so much Tricia.

i also want to thank my SPECIAL friend Dianne for the many many many gifts and cards you have sent my whole Family, I am soooo lucky to have you as a friend. And thanks to Keith for the coolest phones you brought Alicia, she loves them and it seems like every morning around 5am one of them starts beeping. I have not figured out how to shut them up yet. I also want to thank EVERYONE for all of the support and prayers. I know there are many people who follow Alicia's progress and I do not know it. I want everyone to know that i appreciate everything. And Thanks to Roni, who I used to work for (and Erika does still) she had sent a baby doll with Erika the last time she came and Alicia loves it also. It is a little black baby doll and Alicia named it Chocolate LOL.

I will update more the beginning of the week after I have a chance to talk with Dr Davies. This weekend Alicia and I plan to just relax and play!!!!!!!!!!!!!!!!!!!!!!!!!!!

Day 12????????????????????

Yesterday when we were in Day Hospital they had on Alicia's papers that she was Day +125... I told them I thought it was wrong and we were a couple of days past that but Kim ( our nurse) counted again and that is what she came up with so I guess we are at Day +126 today.

Everything is still going well with Alicia. We were in Day Hospital again today but this visit was for 11 hours. We were so tired by the time we got back to the RMH. Alicia is asleep right now and I am not to far behind her.

The Doctors are starting to worry a little more now with her elevated White Blood cell count. It could mean many of things, one being a virus or infection but all of her cultures are coming back negative so they are getting concerned. Another could be Blasts which could mean Leukemia but I do not want to even believe or think about that. Another could also mean the high doses of steroids she is on and has been for some time now due to the GVHD. I have an appt now with Dr Davies on Monday ( switched from Friday ) so hopefully we will know something as to what she is thinking then.

I am starting to feel a little depressed with the Holidays coming from being away from my family. I am glad Erika and Anshon and the boys will be here for Alicia's Birthday but I have never been away from my Daughter on Thanksgiving or Christmas. That has been on my mind alot lately. I am sure it has been on her mind also with not being able to be with her daughter as well. I am also glad that Denise will be here on Thanksgiving, I am so lucky to have her as my sister. The sacrifice she is making and leaving her family for us on Thanksgiving will not be forgotten. I LOVE YOU DENISE!!!!!!!

Well I am very tired. Today was a very long day. This picture I wanted everyone to see how well Alicia is looking. I took it Yesterday, it is in her room at the RMH. ( Thanks alot Denise for the Playdough, she made a HUGE mess)

Day +126

Everything is still going good here in room 4 at the RMH. Yesterday we got up and got all ready to go to the hospital for her infusions when Donna the Nurse called right when we were walking out the door to tell us that we did not have to come because she had worked it ou to where Alicia was going to be able to get her IVIG at the RMH by a Home Health Nurse that way we would only have to be in Day Hospital three days a wek instead of four. I LOVED that idea but after talking for a few minutes we both remembered that Alicia needed her dressing and caps changed and a Cbc done to check her counts so we went ahead across the street to do that and we were back to our room in little over an hour. It was great, we got to take a nap and play and it was awesome to be here and not at the hospital.





Well this morning the Home Nurse got here around 11am to start her IVIG, she should be about done. Alicia is taking a nap. It felt really good to be able not to have to set an alarm and rush around to get Alicia over to the hospital. She does have to be there in the morning at 8:30. Hopefully next week they will be able to do both IVIG infusions here and that will cut us down to two days a week only if her Platelets will last that long.





I can not believe Alicia will be 6 years old in 28 days. Time goes by so fast. That means her Mommy and Daddy will be here again in 24 days. I know she will be so happy. I finally get to see the boys as long as they are not sick and Alicia is doing ok. Dr Davies has alreay OK'd them to come for the four days that Erika and Anshon will be here. Denise will be here the following week for a FULL week and I am looking very forward to that also. Denise took some pictures of my grandsons last weekend and sent them to me look how big they are getting. Don't forget I left Jayshon when he was two days old, he is sooooooo big and soooooo cute............ The first one is of Anshon Jr.............................

I CAN NOT WAIT TO SEE THEM!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Thanks again for all of the Support an Prayers!!!!!!!!!!!!!!!!!!

Day +124

Things are finally getting a lot more calm down now. I am getting so much faster giving Alicia all of her meds and getting her hooked to her IV's. I have almost got it down to two hours, and now I even have the next morning ready and laid out so it saves time before we have to be at the hospital.

The RMH had a family here last night that had a little Halloween party for all of the family's. I was very nervous about letting Alicia come out of the room to go Trick or Treating but I decided if she had on a mask and gloves and stayed by me and did it quickly that she would be OK. It is so hard for someone her age not to be able to do anything but I know how easy she could get sick being around other kids. She had a blast and I am glad I let her go ( only for 15 minutes ). Here is a picture of her in her costume in the room without her mask before we went out.

Yes of course she was Sponge Bob. Alicia corrected me though every time I said she was Sponge Bob, she said " no mee-ma I am Sponge Bob SQUARE PANTS " excuse me!!!!!!!!!!!!!! She got a full bag of candy in the short 15 minutes were there.

There was one episode I still laugh about every time I think about it. There was an older gentleman at the beginning of the Trick or Treat line that was handing out bags for the kids to get the candy in. He had a bag with different bags for boys and one full of girly ones for the girls. You probably can guess what happened next, YES he gave Alicia a boy one, it was Spider Man. I didn't say anything because I did not want to embarrass him and Alicia had her own bag I had got anyway but I thought I would just share that.

I finally got everything put away in the new room. It took me all day Saturday and I even got four loads of laundry done so I could use Sunday to re-coop to start over again tomorrow. We have to be at the hospital at 8:30 in the morning, Tomorrow will be ONE WEEK we have been out. And I am loving it even thought I am soooooooo tired.

I will update on how all of her visits go. Thanks for all of the support and prayers.

Day +122

Things are starting to calm down a little finally. Alicia is doing GREAT!!!!!!!!!!!!! She is a complete different little girl now that we are out of the hospital. She is soooooo happy and she is even eating finally. I am still very tired but hopefully I will be able to catch up on some sleep this weekend. I am doing OK though. Dr Davies calls the Nurse in charge at the day hospital to see how I am and if I look tired. Everyone is saying that I am doing a great job so I think she is feeling better about letting Alicia go home ( to the RMH )

I think I have finally got it down to a fine art with giving Alicia her nightly infusions and Meds. Tonight I broke a record and got it done in just a little over 2 1/2 hours. I have everything ready for in the morning already so all I have to do is get up and start the pump and go back to sleep!!!!!!!!!!

We still have to be in Day Hospital everyday but Tuesday for a while but I am OK with that. Alicia had to get Platelets today otherwise we might of had to go over there this weekend. Hopefully now I will have time to get the room over here situated and laundry done before Monday when the madness starts all over again.

Well I am off to bed so I can try to catch up on my rest. Thanks everyone for all of your support.

Day +120

Sorry I have not updated since we got out it just has been soooooooooooooooooooo busy. I do not even know where to begin.

We finally made it to the RMH Monday evening around 5:45pm. I rushed over here because the Home Health nurse was supposed to be here at 6pm to help me hook up Alicia to all of her IV meds for the first time. I was very nervous and to top it off the Nurse was an hour late. She finally got here at 7pm and we started unpacking the 7 HUGE boxes of supplies that were delivered just before she arrived. After all of the boxes were open we started hooking her up. It was such a huge mess in our room!!!!!!!!!!!!!!!! I still hadn't been able to even start putting anything away from moving rooms on Saturday. Finally around 11:30 pm we were done hooking her up and giving her all of her other meds and the nurse left.

Yesterday morning I had to wake up at 6am ( minding I just went to sleep at 1am from unhooking her and throwing all of our stuff in the back bedroom, I didn't have one bit of energy to even try to put anything away ) Any way I started again with the one med I give her every 8 hours at 6 am and then had to unhook the other two that were connected overnight and give her steroids also and then it was time for PO meds again. We finally got all that done around 11am and that is when I finally got to give Alicia a much needed Bath.

I started to finally put stuff away around 2pm and sat down to rest around 4pm. I do not remember going to sleep but when I woke up it was almost 6pm and time to feed her and start all over with her IV meds and the Nurse got here to make sure I was doing it right. Finally once again I was done with everything around 10pm and tried to put more stuff away but I got tired very fast so once again it did not get done.

They are doing room checks on all rooms tomorrow so I hope I do not get in alot of trouble because I am not even close to getting it all put away. And to top it off the Air Conditioner here is not working and it is very very very hot in here. I have a fan blowing on Alicia at all times but that scares me to death because that could make her sick. I almost wish we would of waited another week to come here so we would still have some air. It is still in the high 80's here and there are no windows to open.

I finally laid down at 12:30 last night and slept til 6am. I hooked her up to her 2 hour med and took a shower than unhooked her over night meds and packed up and went to Day hospital for our infusions. We were there til almost 7pm ( thank goodness for air ). As soon as we got back it was time to start all over again on her nightly meds which I now know takes over three hours to do. I did them all by myself this evening and that made me feel good!!!!!!!!!!!

Tomorrow morning we have to be back at the hospital at 7:30am and they already told me it will be another long day.

So with that I hope everyone understands why I could not update, plus I finally dug deep enough into putting our stuff away to get to the computer. ( but far from getting it all done. )

I soooooooooooooooooooo can not wait til Erika and Anshon get here so I will have some help. Hopefully by the time Denise gets here some of h=these meds will be history but if not I know they all three will be a huge help. I just want to sleep for a whole day and not wake up!!!!!!!!!!

I once again need to ask for prayers for my friends daughter Abby. She was admitted again today. She is bleeding inside and loosing blood but they do not know from where yet. They are both so VERY dear to me. Reid has been the best friend ever through all of this. Please keep them in your prayers. Her web page is carepages/abbypatterson.

I will update soon. I know this will all get alot easier as soon as I get used to it and have a routine down.

Day +118 DISCHARGE!!!!!!!!!!!!!!!!!!!!

WE ARE OUT OF HERE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Everything is a GO!!!!!!!!!!!!!!!!!!! Alicia is doing very well!!!!!!!!!!!!!!

I have taken all of our belongings to the RMH yesterday ( thanks Tina and Keith) I only have one load to take before it is time to take Alicia and my computer will be in that load so I will update when we finally get there.

Alicia had the hugest smile on her face yesterday when she seen Keith. She was looking for him all night after he left. We even had to call him and she kept telling him to come back. I can not wait until Alicia can be around everyone. he misses everybody so much.

We are also looking forward to getting to spend time with Abby and Reid when this is all over with. Alicia wants to play with all of Abby's toys.

We probably will not be out of here until late afternoon. Alicia has to get Platelets, they were down to 15,000 this morning. Her Wbc is still elevated, to day it was at 19.3, her Hbg is still good from her transfusion a couple of days ago at 13.5 and her Anc is still high at 15.63 today.

he also has to get her IVIG which will take four hours. They had to pre-med her with Tylenol before the infusion so if she was going to get a fever they would not even know it!!!!!!!!!!!!!

We will be back in day hospital Wednesday. Our only day to our self's is Tuesdays so when we leave here this afternoon we will have all night tonight and tomorrow. That is good since I have not been able to put anything away in our new room at the RMH.

Well wish us luck I am off to the RMH with our last load!!!!!!!!!!!!!!!!!!!!!

Day +116

The last three days have went by so fast. I have been so busy and unable to stop. I have made up my mind that we are going full force come Monday. Alicia is looking so forward to leaving ( yes she found out and she promised no fevers ). I figured all I can do is give it my best shot and if it is to much to handle than we can always come back. I know I can do it though. After going over the schedule they had made for me I moved times around and came up with Midnight to 6am for me to sleep and a few hours during the day for naps when needed. I get less sleep than that in here!!!!!!!!!!!!

Home Health has been working with me for two solid straight days. I think I have everything down but they will also spend three days with us at the RMH just to make sure. We also got a new room at the RMH. It is a transplant suite. I have been on the waiting list for four months now. They called me yesterday and offered it to me so I had to run over there and move everything from our old room to our new one. The new one is way better. Alicia has her own room and there is Internet and cable and it is alot bigger. I am soooo tired from moving everything but I still have to put it away. I just threw it all in the new room so I could get back to Alicia. I figured I would go over there tomorrow and try to at least get it out of the way for when I bring Alicia on Monday. Tina and Keith are going to help me move all that I have left in the hospital room tomorrow and then Monday it will just be getting Alicia over there.

Tuesday will be the only day I will not have to be at the hospital so that will give me alot of time to get everything situated before the busy days start on Wednesday.

Alicia has been feeling great. Today we left the room for a walk around 4pm. We were just going to get some candy out of the machine but it ended up being a very long walk. Alicia needed it and so did I. We even went outside to get some fresh air. Alicia walked the whole way. We only had to rest two times. She loves it when she is unhooked from all the meds and the pole. Here are a few pictures I took today..............

Of course she did not get to touch anything and we walked very slow but it did us both good to get off the BMT floor.

Alicia is also getting very excited for Mommy and Daddy to come back. I keep telling her they will be here right before her Birthday so now she keeps telling everyone that her Birthday is coming soon. ( how cute ) I can not wait to see the boys!!!!!!!!!!!!!!!!!!!!!!

I also found out a couple of days ago that Denise will be here the whole week of Thanksgiving with us. I was really dreading being alone on Thanksgiving. I am sooooo happy Denise will be here. I told her we might end up having sandwiches in the RMH room but at least we won't be alone. Hopefully she will be feeling better by then.

Well it is late and tomorrow is another busy day. I have a little more packing to do tonight and then ti bed for us. Thank you so much everyone for following Alicia's Journey. The prayers and support are very much needed to get through what we have so far and also what we have also ahead of us.

Day +114

Today was very busy. Home Health has been her working with me from 10am to 5 pm. They are trying to figure out how it is even possible for us to be released on Monday with all of the Meds that Alicia is still getting IV. This is what they have come up with so far but I know that it will not work so I might have a hard decision to make tomorrow................

7am to 7pm TPN and LIPIDS
7am to 9am Ng Feeds
10am to 2pm Ng Feeds
9am -- 11 oral meds administered
10, 4pm, 10pm, 4am check blood sugar
1o pm give insulin
9pm oral meds--11 oral
1pm and 5pm--3 oral meds
10am and 1opm inject steroids
(this one is the worst)--mmf given at 8am, 4pm, 10pm, this is by iv and takes 2 hrs to infuse.

Also the feeds can only be put in the bag for four hours at a time so all night long I will be up to fill up the bag with feeds.

Alicia will also have to be the day hospital every day except for Tuesday to get her IVIG and Imflexamid which are both four hr infusions and she gets them twice a week along with her Ambicon and Platelets as needed.

So that will leave me from 1am to 5am to sleep, and this is not even leaving time to shower or eat or get Alicia dressed or to play or feed myself.

I know I will get tired fast but I will not know until I try. Dr Davies said it would be at least a month like this. Hopefully I will figure out a schedule that will allow me enough time to take care of my self also. If not I know it would be best to stay ere in the hospital until she was off some of the meds.

I will let everyone know what I decide tomorrow. I have a time to sit down and talk to Dr Davies. One minute I feel like I can do it and I know if I cant that I can always come back and the other minute I feel like I should just stay until I am certain and the MMf is switched to oral.

I am just very frustrated and over whelmed. Alicia is doing great that is another reason I want to leave and get my feet wet now. I know for a fact that she eats alot better at the RMH and she seems to do alot better over there. I guess I will just sleep on it.

Day +110

Well we had a little scare last night but not enough to set us back!!!!!!!!!!!!!!!!!!!!!!! Alicia's temp got up to 37.9, it is not counted as a fever until you get to 38.0 so she was the closest you can get to having one. I was thinking to myself "YOU HAVE TO BE KIDDING ME"!!!!!!!!!!!!!!!!!!!!!!!

Her potassium was also very low when they did her Cbc's yesterday so they had to give her a Bolis is which is large amount at one time. Then they waited an hour and drew more blood to check it again. She ended up having to have 2 bolis's before they could finally get her Potassium to a level they were ok with. They are also keeping a close eye on it today.

Then this morning her WBC and ANC were very elevated and it has been going up a little every day. To me that would mean she is fighting something that we do not know about but the Docs do not think that is the case since they have been doing cultures every 72 hours for a while now and nothing has shown up. They are going to keep on doing cultures so if that is the case it will show up in one and since she has not had a fever in over three weeks they say not to be alarmed with the elevated counts ( although we were as close to a fever as you can get last night)

Today they are going to do some more test just to make sure there i nothing going on. On top of the blood culture's they are doing a urine and stool test. They are also going to do another Ultrasound bu this time they are going to focus more on her spleen. They said that could also be a reason for the high Wbc.

Alicia is still doing very well though. She seems to be feeling better more and more every day. Right now she is coloring and watching Halloween h20 fir the 2ooth time in three days. Sponge Bob was pushed to the side. She is still not eating well at all. They raised her feeds and she seems to be tolerating them so hopefully hen we get out Monday she will eat more at the RMH. She always seemed to do better when we were at the RMH on passes last month.

Mommy and Daddy will be here in three weeks again. They will be here the weekend before Alicia's Birthday on November 18th. We are All excited!!!!!!!!!!! This time they are bringing my Grandsons and they are staying for four days not one. We are going to keep Alicia and the boys apart so that means I will get alot of time with the boys when Alicia Mommy and Daddy are together. I CAN NOT WAIT TO SEE THEM!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Day +109

Sorry about my update yesterday. As you can probably tell I was very frustrated. But today is a much better day.

WE HAVE A PLAN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

yesterday after my updated during what was probably my most frustrating moment I e-mailed Dr Davies. She of course called me back and we chatted for a while. She is actually in Eugene OR at a FARF meeting. ( thanks Dr Davies ) I told her how I felt that there was no plan or at least I did not know of it if there was one for as far as us being able to change what needed to be done in working toward us moving to the next part of our Journey. I told her that it was very hard to hear Alicia cry to go home and to see her doing well and have no hope or plan in getting out of here. I told her even if the plan was five months from now that I would be OK with that just as long as I knew that there was a plan and everyone was on the same page. I felt alot better after I talked to her.

Well this morning when I woke up I thought to myself here we go again. I knew that it would be a new doctor on rounds and with the past it felt like we were starting over. So I went to rounds with my guns loaded ready for a fight. As soon as I walked out of the door the first thing that was said by the Doctor was "I heard you are ready to go home " she had a smile one her face as did everyone else that was in rounds. So I put my guns back up and i felt hope for the first ime in a long time again.

The plan is to start switching some IV meds to oral the next few days, to window her TPN and feeds and also to raise the feeds as to how much Alicia can tolerate. She will still be on three IV meds when we leave as well as four infusions a week which will have to be done in the Day Hospital, but our plan is to get out on MONDAY!!!!!!!!!!!!!!!!!!!! Yes that is one week from today and I feel like this time it might be for real!!!!!!!!!!!!!!!!!!! So this week will be quite busy learning the new meds I will have to give her. I know we are both ready this time. Wish us luck!!!!!!!

Day +108

Alicia is still showing signs of improvement, except in the eating department. Although this morning was the first morning in almost 2 months where she ate. She had 2 mini Cinnamon rolls that A friend made for her son her on the floor. I was sooooooooo happy. I made such a huge fit over it but the excitement was soon smashed.

Alicia is on a very big kick about wanting to go home. She has been asking ALL morning if it was time to go home yet. I keep telling her that if she keeps eating and getting stronger than it would be soon but that is not good enough. Every Nurse or Doctor that has walked in our room this morning Alicia has asked if she can go home. It makes me so sad I just want to bawl. Last night I had a dream about our families Thanksgiving, and our family all together. We are so home sick. Yesterday my family had a Baby Shower and when I called home all I heard was the laughter and it hurt my heart bad. I told them to find the biggest doll or teddy bear and sit in a chair and put a beer in my hand and do not let anyone sit one me. My sister laughed but she did it. Erika was there and she made she I was included in everything. At least I knew my name was being mentioned alot!!!!!!!!!!!!!!!

Well the Doctors just rounded on us and I kinda lost it. I tried not to cry but it did not work. Do you know how hard it is to have someone you love as much as I do Alicia ask to go home. I still have tears rolling down just thinking about it. I told the doctor I wanted some time frame or plan as to what is happening with us going home. I told her I needed to know, even if it was going to be a very long time I needed to know and she told me it was hard to tell, that she has seen a big improvement in Alicia in the last week but she still has alot to over come before we will be able to be released. Alicia is on alot of IV meds that needed to be changed to oral and that would take time she said. She also told me she was for sure it would be at least 2-3 more weeks.

Sorry today is not a happy one for me. I miss my family very bad and I have not seen my Grandsons in over 4 months and now it looks like it might be another 4 months before I get to see them. I will write more today when I am feeling a little better.

Day +106

Alicia is still doing great in my eye's. We had a little rocky day yesterday, but this morning has been a good one so far. Alicia is still having alot of tummy pain but all of the tests for virus's or anything else has been negative so the Docs are still saying her gut needs time to heal. I keep hearing the words "Baby Steps" alot these days. I am OK with that though. If it takes another few months to heal I will be right beside her all of the way. She loves it when I rub her tummy, my hand gets so tired. I just lay in bed and rub her tummy for a long time. Usually we are watching a movie. She has been on a "Scary Movie" kick lately. Alicia loves scary movies and she never has night mares. She has been watching them since she was little. I know that sounds strange, and I was very against this at first but she loves them. I guess after what she has been through there is nothing more scarier. So if anyone has any suggestions on any new scary ones out let us know. She even loves the older ones. With Halloween coming I think we are going to try to have a marathon and watch one every night. She usually makes me close my eyes during the scary parts cause she is worried it might scare me. Si if any one has any send them our way!!!!!!!!

They have opted to slow her feeds down again because of her tummy. ( baby steps ) I even heard through the grape vine that we will probably be here another 2-3 weeks. She is walking very good still. I refuse to let another week or even a day go by without getting her out of bed and in the halls to walk. She loves meeting her friend Abby to walk but lately the last few days it has not worked out that way. Alicia got out in the afternoon yesterday and Abby in the evening. Alicia was with the therapist and so was Abby but it just happened to be different times. Here is Alicia during therapy yesterday..........

The last one was taken with a very good friend of mine I met here. Her son Anthony also has FA and he is on his 3rd transplant. She and Anthony are awesome people. Alicia loves Roxanne alot ( Roxanne is her name ) . Alicia also clicked very much with Abby's Dad and Brother Peyton. Peyton was Abby's donor. He is a HERO!!!!!!!!!!!!!!!!!!

We also had an episode a couple of days ago with Theo. He had to go home and take a bath cause his mommy called. When he left Alicia told him to hurry up and come back the next day. Well when she woke up that is the first thing she asked for. I went on a mission to find Theo but no one knew where he was. So instead she got to visit with Theo's brother Spike. Alicia looked at him very crazy when they brought him. She told the nurse he was not Theo. I snapped picture while he was here for the few seconds he was because Alicia was even more worried about Theo since his brother was here. Finally after about 30 minutes they found Theo and he was back in Alicia's care, as you can tell he is in the wagon in the picture with the Therapist yesterday. Here is Spike............................

Denise finally made it home from the hospital. She is still in a lot of pain but she is happy to be home!!!!!!!!!!! Erika is trying to find a way back up her again. She told me yesterday that she is hoping to be here next weekend again. I soooooooo hope it happens.

Thanks again once again for all of the prayers and support.

Day +104

Well not much change with Alicia still. She still seems to be doing much better, she is walking the halls alot with her friend Abby. She also LOVES Abby's brother and Daddy. She think Perry is sooooo funny.

Alicia still is not eating and is having problems with tummy alot. They did an x-ray yesterday and I am waiting for the Doctor to come in now and let me know the results with that. They did stop her feeds also again last night. I guess her little tummy is not ready yet. Although last night around 4am she did wake up and ask for a Hot Dog but go figure I did no have one to give her, I promised just as soon as she woke up I would get her one but once again her tummy was aching so she would not eat it.

They also did more cultures on Alicia yesterday, not because of a fever this time, she has been fever free for eight days now and four of those days she has been off Vancomycin. This time the cultures are because of her WBC and ANC doubled over night which is an indication that she could be fighting something. I still do not have the results from those cultures yet.

Her counts are very good though. Her WBC is 15.20 her HBG is 11.9 her Platelets are at 24,000 and her ANC is at 13.78. They have also done another Fish study on her to find out if she is still engrafted but I believe she is still at 100% donor.

The "D" word was once again mentioned. The last I heard she might me discharged the week of the 14th. That still seem sooooo far away and I know best that anything can happen in that amount of time. I am just truly glad that Alicia is doing as well as she is!!!!!!!!!!!!!!!!!!!

Alicia loves scary movies, she has for a very long time. The last couple of nights we have been watching scary movies because it is almost Halloween. I crawl in bed with her and we watch which ever movie she wants. Last night though we did not get all the way through it. We ended up in a wrestling match. Alicia won of course. It was so much fun to see her playing like her old self. She would stand up in bed and fall on my belly really hard and we would just giggle and giggle. Then we would play the tickle monster. I wen to sleep last night soooo happy that she was playing like her old self.

Please pray that Alicia's tummy starts to heal soon. I will let everyone know any results after I find out what they are.