Day +225

Everything is still going good here except for the weather. It has been snowing then raining then ice and now snow again. Luckily we have not had to get out to go to the hospital but once. Tomorrow although we have to be there very early for Alicia's clinic appointment and it is all up hill to get there so I hope we make it without to many complications. These two pictures were taken yesterday and it has snowed since so you can only imagine how much worse it is. Cincinnati has been in a Level 3 Emergency for two days.

Don't worry Erika she was only out there for three minutes.

I just hope it all clears up before Erika and Anshon come next week. That would so break Alicia's heart. All she is talking about is seeing Mommy and Daddy.

Alicia's Magnesium levels have been very low for a while now and it is starting to get concerning. She has had to have Bolus's and now they have tripled her oral and IV magnesium as well. Hopefully when they check her level tomorrow it is back up since they have raised her doses. I am not totally sure as to what the risks are when it gets to low but that is going to be discussed tomorrow.

My family is still searching for an apartment for me back home. They have not had any luck as far as I know. I am going to have a long talk with Erika when she gets here as to what exactly we will need so hopefully it won't take long to find one.

I will update after her appointment tomorrow. wish us luck getting over there tomorrow.

Day +221

Everything is still going good here in room 2 at the RMH. Alicia's attitude has been Awesome and every other word out of her mouth has "HOME" in it. I hope I didn't jump the gun by telling her we were going home soon but I am so excited as well.


Erika and Anshon will be here a week from Thursday and e are also excited about that. Robin, Alicia's Home Nurse is here giving her IVIG. Alicia and Robin get along so well now. It is going to be hard leaving all of my new friends when we go home. I have met some of the best people here in Cincinnati. These people are "True" friends and I am going to miss them so much. A lot of my friends have already left and went home and I miss them sooooooo Much. I am having Reid withdrawals LOL. I talk to Kelli and Nikki, Aylane and Reid by phone or e-mail but it is not the same as seeing them as I used to. I have also gotten close to a few people at the RMH and when I leave here I know I will miss them dearly also.


Alicia has a clinic appointment Friday so hopefully I will find out more details about us going home so I will let everyone know when I do. There is a lot that has to be put into order back home before we can actually leave since we can't come back and forth every two weeks like most kids do. I have faith though that it will all fall into place and we will be home soon.


A little boy named Dylan needs some extra prayers!!!!!!!!!!!!!! He had FA also and is having a very hard time. They found a mass behind his heart and his airway is being compromised. His web site is www.caringbridge/visit/dylanmoore Please keep his family in your prayers as you pray for Alicia as well.

Day +219

We finally got the news I have been waiting so long to hear..................................................................... WE GET TO GO HOME!!!!!!!!!!!!!!!!!!!!!!!

Alicia had a clinic appointment yesterday and Dr Davies said we can go home the last week of February which is only a month away!!!!!!!!!!!!!!!!!!!!!!! She said we will have to come back in a month and then every two months after that. Alicia is sooooooo excited. All she has talked about since we found out is that she gets to go home to see Mommy and Ne Ne and Aunt Kelli. Erika and Anshon will be here on the 5th so time should fly by hopefully.


There are still a lot of details to work out before then. Dr Davies wants to talk to the Hematologist in Wichita and make sure he is comfortable with taking Alicia and she made sure I understood that if anything went wrong that Cincinnati would send a Medical Jet for us.


There is also still the problem of getting us an apartment before we get back also. If everyone remembers I gave up my house to bring Alicia so my stuff is still sitting in a storage and We need a safe and sterile place to bring Alicia home to. The church we attend did a fund raiser for Alicia before we came so I am hoping that the money raised can be used to help us get an apartment to come home to. If anyone back home knows of anyone that rents out apartments please let me know.


This has been such a long time for us, it will be 9 months that we would of been here so I am very nervous about going back home. I have spent so much time just focusing on Alicia that getting back to a "Normal" life is going to feel very weird. When we get home we will have to be extra careful as to who Alicia is around. Dr Davies stressed that she can not be in a Day Care environment so that is another obstacle I will face when I will be able to go back to work and who will watch Alicia. I hope I can find someone who is willing to help take care of her that has no other children in the home. I know it will all work out but I am just kinda freaking out at he thought of going home.


Thank you everyone who has helped us and supported us through out all of this.

Alicia wants everyone to see all of her hair she has now!!!!!!!!!!!!!!!!!

Day +213

I am so sorry I have not updated since Tuesday. Everything is still going good with Alicia. We only had one scare and that was the first night she got out of the hospital. She had an episode of throwing up but nothing else since then and NO FEVER!!!!!!!


Alicia and Denise are having a lot of fun. We have been able to spend a lot of time together since Alicia is not in the Hospital, we will miss her when she leaves Tuesday. Alicia keeps saying when Ne Ne leaves Mommy is coming so now I got to figure out how to get Erika here quick.


Alicia had a clinic appt Friday and her Potassium is low so we are having to give it to her orally now also. Her med list is soooooooo long. They seem to add something every week but never take any away. I can not wait for the day when this all ends!!!!!!!!!!!!!!!!!!!!!!!



I will update more after Denise leaves. We took Alicia on the ferry across the river yesterday, she had so much fun. It was in the car of course. She thought is was so cool to put the car on a boat.

Day +208

Just a quick update to let everyone know Denise made it here safely last night around 10pm. Alicia was so excited to see her. She yelled her name just as soon as she walked through the door. I hung out for about 30 minutes then left them two to catch up and I went to the RMH for some much needed rest. I finally slept ALL night in a REAL bed without being woke up several times. I have only slept in a bed three times in three weeks, with Christmas and being in the hospital. It felt GREAT!!!!!!!!!!!


More good news.................... Alicia is being discharged today.............. I believe they need the room but I am ok with it. She is doing great and NE NE is here so we can have some quality time together. Alicia will be isolated in her room but at least we have Ne Ne.


I will update more later. Thanks for all of the support.

Alicia is doing a lot better. They took another chest x-ray yesterday afternoon and it seems her lungs are already clearing up. She is still fever free and all cultures are still negative. They have taken her off of two of the three antibiotics and as long as she behaves herself they will take the third one off tomorrow. STAY AWAY FEVER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

She is totally driving me crazy about when we NE NE get here. I keep telling her she is in the airplane but she doesn't understand. HURRY NE NE!!!!!!!!!!!!!!!!!! I am going to the RMH tonight and getting some sleep so I am just as anxious as Alicia!!!!!!!!!!!!!!!!!!!!!

Today I drilled Alicia this morning on what I wanted her to say when Dr Bleesing walked in after rounds. She was to tell him that she loved his shirt and he was so nice and he was her best friend. Then she would throw in at the end "Can I please go home". She had it down to a tee. We roll played for over an hour. And guess what............................. He didn't come in the room after rounds. LOL He waited and came in three hours later...... JUST MY LUCK!!!!!!!!!! of course by then she had already forgotten what she was supposed to say. The Nurses just laughed at me. So I put plan B into action. I asked for window paint and this is what I did.............

Dr Bleesing walked by about 30 minutes after I was done and just shook his head and laughed. I hope he gets the hint!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Day +205

Alicia is feeling a lot better today. The only problem she had today is with her Potassium. It has been very low. Normal range is between 3.3 to 4.6 and Alicia's was down to 2.1. After 4 IV bolus's and two oral yesterday and 2 IV and one oral today they finally got her count up to 3.5. I just hope it stays that way. I asked them what effects could come from it being low and they told me problems with her heart. She has not had a fever since Friday morning and so far all of her cultures have been negative. The docs told me it could take up to two weeks for any growth so I am still holding my breath. Her Wbc was down today to 14.7, this is still slightly high but far better from 38 Thursday night. This tells me that the antibiotics are working and what ever bacteria or infection she has is under control.


Her attitude is a lot better also. All off the nurse's can not believe how nice she is being. If you remember when she was inpatient for so long after transplant she was so mean to them and give them really bad looks so they are all stopping by her room and soaking up the kindness while it lasts. She did have one episode earlier though. I had went across the street to get some clothes and Bubba, her doll, and when I was walking back in her Nurse was waving at me to hurry. When I got in her room Alicia had her shoes and mask on once again and was pushing her pole out the door. I could hear her saying "I can not see mee-ma, I go find my mee-ma" The nurse said she was not taking No for an answer. The mistake I made was leaving her while she was asleep. I guess now I will have to wake her up and let her know I will be right back LOL.


You will not believe the comments I get on her baby Bubba. Everyone says he looks so real. One lady even stopped me while Alicia was pushing him in her stroller to tell me he was about to fall out. When she realized he was not real she just laughed. On the way up in the elevator a man did a double take and said "O my I thought that was a real baby. I was even holding him by his leg LOL. I had a friend with me and we decided it would be soooo funny if next time I would act like I was breast feeding him so I am going to try it LOL. Here are some pics I took earlier today.

This is of Theo and Bubba.... Yes Theo is here also..........................


And this is Alicia and Bubba..........................................................


I know I say this in every post but I want to thank everyone sooooo much for your support and prayers. I never imagined this journey would be so long and hard and it is all of you that gives me the strength to keep pushing!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Day +204 update

Thanks Denise for the post. I am still very tired. It all started actually last night around 7pm. Everything went well yesterday during Alicia's clinic appointment. The only problem was with her BP being high and after giving her some meds they got it done to normal and sent us on our way. Alicia slept most of the afternoon and woke up with severe tummy pains and started vomiting. I took her temp and it was already up to 101.4 so we were about to experience our first visit to the ER which is a horror story by its self. We got there and within an hour her temp was up to 102 so they gave her an antibiotic called Zocin. After it was done being infused they check her BP and it started falling very fast. It got all the way down to 60/30 so they started pushing fluids in to her line and contacted the ICU. After about 600ml's of fluid and steroids they got her BP back up and gave her two more antibiotics. They said she has some obvious Bacteria growing some where because when the antibiotic went to the infection and killed it the effect was toxins being released inside her body which attacked her BP. Finally after hours the ICU decided she would be able to go to the BMT floor which I was so relieved. They took chest x-rays and took blood for cultures and after about 12 1/2 hours in the ER we were finally given a room on A5N. She is currently in room 504.


Dr Wally came in after we got here and said the x-ray showed she has pneumonia in both lungs. He listened and agreed with the rest of the Docs that her lungs sounded clear but the x-ray clearly shows it is there. He said we will be in the hospital for at least 3 weeks. He also said her WBC went from 13 yesterday morning to 38 last night in the ER which now they are very concerned about.


I am so emotionally drained. I am exhausted. Alicia and I both did not sleep a wink in the ER. They have been running tests all day so we have not got much sleep. Her cultures have not came back yet but when they do I will let everyone know what the results are. Denis will be here Monday for a week and that is the only thing that is keeping me going. I NEED REST!!!!!!!!!!!!!!


Please say an extra prayer tonight for Alicia and also Erika. Erika is soooo worried and wants to be here which we are trying to arrange. Thank you for all of your support.

day+204

this is denise i am updating for michelle. last night around 10pm alicia started throwing up and had a temp of 101 so michelle took her to the er and they were there all night and they finally admitted her at 7 this morning and nichelle is exhausted. alicia tested positive for pnemonia and she needs everyones prayers. michelle is relly exhausted and needs prayers also. i will be there monday for a week to help her and let her get some rest. please keep them in your prayers-Denise aka NeNe

Day +201

O my I can not believe it has been over two hundred days since Alicia received her "New chance at life". I never realized when we started this journey that we would still be in Cincinnati over two hundred days later. She has came a long way though and I thank the Lord every day and every night for every day and every breath and every moment he has given Alicia. She is truly a fighter and a Winner. I am so very proud of her!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!





We are just hours from being discharged. Alicia started eating a lot better yesterday, and today we are being discharged back to the RMH. Alicia is surly showing out before she leaves. She is singing for every nurse that comes in, and she even called Alyssa which is one of favorite Nurse's here on the South side of A5 along with Liz. She even started dancing and popping her butt when Dr Philipovich came in this morning to check her out. I was soooo embarrassed. Then she asked the Doc for a dollar because she sang also. Everyone just laughed and I turned beat red. I shouldn't even have been surprised.





Alicia said good bye to Theo again, this stay he was here with her every moment. They are such good friends. She had to make sure he got all of his meds last night before she left today, it was so cute, she cares so much about Theo. I took a picture of their "last night together" as you can see on the table he gets just as many meds as she does.



Hopefully this is the one and only set back and we are on the road to Kansas soon. I can not wait til the day when we touch ground and do not have to return here for a long time!!!!!!!!!!!!!!!!! Thank you so much for everyone who believes and supports Alicia. Without each and every one of you we would of not made it this far without going crazy. There are so many of you ( you know who you are) that have been extra special to us and I want to thank everyone again and again for everything you have done and the many many prayers that brought us this far.

Day +199

We will start witht he good news first...... Alicia ate last night!!!!!!!!!!!!!!!!!! She ate half of a plate of Speghetti and a WHOLE bowl of cereal!!!!!!!!!!!!! I was so very happy to see he eating. She kept looking at me to see if I was looking, then she would ask me if I was proud of her. I told her I was soooooooo HAPPY!!!!!!!!!!!!!!!!! I even took a picture so everyone could be so proud of her.

Now on to the not so bright news. Alicia started having problems with her Blood Pressure last night. She got as hgh as 161/99. After giving her lasixs and hr pottying a million times, they finall gave her aother med ( at midnight ) and then after they ad tocheck her Bp every five minutes for the first 30 minutes then every ten for the next thirty minutes and every half hour after that. Around 2am she finally went down to normal only to wake this morning very hig again. They just gave her some more eds so hopeflly it will be under control fast.

Dr Davies just came by to see Alicia and she said that if we could get her Bp under control by Tusdaythen we could goback to the RMH. HORAY!!!!!!!!!!!!!!!! She also stopped all of her Tpn and gave her a 6 hour window on her feeds!!!!!!!!!!!!!!!!!!!! It looks like we will be out of here soon!!!!!!!!!!!!!!!!!!!!!!!! Maybe it had todo with a " want out picture I sent her"

Day +197

All is still about the same in room 547. Alicia still has a very good attitude even though she is still in the hospital. She wakes up every morning and asks me if we are going to the rmh. My answer to her is, are you going to eat today? And her answer is aways, I can't my tummy is to big.


She has been on TPN now since Tuesday, I just hope her Liver numbers don't start to rise like last time. So far so good. They also started her back on NG feeds through her tube yesterday. They started them very slow at 5ml's per hour which is just enough to coat her stomach. Her Hemoglobin was also low yesterday at 7.o so she got some red cells yesterday. Her platelets continue to grow on their own. Yesterday they were up to 92,000 which excited me so much. Her Wbc is also great. It has finally came down which the Doc chalks up to the RSV virus she is fighting. Yesterday her WBC was 10.8.


Thank you again for the many prayers and support. I am very confident that 2009 will be a great year for Alicia, and the many other children and Adults fighting FA.