Day +101

Well we survived Day +100. It just doesn't seem like it has been that long. Alicia had another good day yesterday. The real Alicia is coming out more and more. All of the nurses have learned how to handle Alicia now, but she still knows how to get her way.

These are pictures of Alicia walking in the halls.......................

She walked in the hall again last night with out holding every one's hand, she did very good. She wanted to stop at every ones door so she could see who was in there and ask them if they wanted to play. It was so cute, she couldn't understand why none of the kids could come out and play. She stopped by Samantha's room and talked to her for a long time. ( she looked very good!!! ) Alicia kept asking her was she OK. Then Alicia kept telling her that her hair was all gone. It was so funny. I kept telling Alicia that hers was all gone also but all she worried and kept saying was that if Sam was OK. Before she stopped at Sams room she Stopped at Hannah's room. She just turned 6 yesterday so Alicia stopped and sang her Happy Birthday. Once again she asked Hannah if she wanted to play. It has to very hard on young children like Alicia not to be able to have that connection with children her own age. I guess Theo will just have to do for now.. She did get to have a little time with Abby though. Reid and I did sneak out in the hall by the elevator with both of them. ( don't tell on us!!! ) We kept distance between the two but they got to talk for about 30 minutes. Alicia was very concerned for Abby. She kept telling her if she would wash the ouchies on her hands it would be all better.

This is a picture of Abby and her Mommy Reid...................

They both have became very special to us. Reid and I have became very close during our children's transplant. Abby is just so awesome. We have already made plans for the 4th of July. Alicia and I are going to Nashville to visit them. I cant' wait til the girls can play with out masks and five feet between them!!!!!!!!!!!!!!!!

Thanks again for all of the support and prayers. I know I say that every time I end a journal but without those two important things from everyone I would not of made it as far as we have!!!

Day +100!!!!!!!!!!!!!!!!!!!!!

I can not believe we are already at day +100. That is the magic number you always hear that means you are ready to go home. And I do not meant the Ronald McDonald house home. I mean Kansas home!!!!!!!!!!!!!!!!!!!!

I do not know if I should cry, be sad, laugh, be happy, mad, frustrated, or celebrate. My emotions are just going crazy today. By all means I am not depressed though. Alicia is doing awesome now and I am finally seeing the old Alicia coming out. ( GREAT) I took her for another walk last night in the hall and she did good. Her tummy did start to hurt a little so I had to end up picking her up and bringing her back to the room. They started her a a very small amount of tube feedings yesterday so I am sure she will need tome to for her tummy o get used to it.

They are also stopping her Vancomycin today also. As everyone know the trend has been usually after three days of being off of the Vanc is when the fevers come back. If we can get over that hurdle than I for see us maybe getting out the following week. ( but the discharge word is no longer allowed to be mentioned in our room. We do not want to jinx anything )

So i believe that this is finally our getting better stages. With out the prayer and support of everyone I do not know how we would of made it this far.

Day +99

Alicia is doing GREAT!!!!!!!!!!!!!!!!!!!!!! The results came back from the biopsy and it looks like the GVH is gone!!!!!!!!!!!!!!!!! CONFIRMED!!!!!!!!!!!!!!!!!!!! Her skin is looking a little better also.

But the best news over all is this afternoon Alicia went to therapy in a wheel chair and I was sitting in the parent lounge when she got back and I heard her little voice. I turned around and Alicia was walking!!!!!!!!!!!!!!! She was not holding on to anything!!!!!!!!!!!!! She was standing up straight and she looked wonderful. I seen my baby again. i was sooooooooooo happy. She said to me look MeeMa my legs are all better and strong now. I about lost it. I will never forget that moment.

My sister Denise is back in the hospital. Her incision is infected and she is in a lot of pain. She might have to delay her trip here in a couple weeks. I hate that I can not be there to help her. She has been so good to us and has helped alot since we have been there. Please keep her in your prayers.

Our friends Samantha Mccarthy and Abby Patterson are also still in need of prayers. Samantha had a seizure last night and was moved to the ICU. Abby is still in a lot of pain and has not eaten in five days. Please keep them in your prayers.

Hopefully Alicia keeps doing so well and this is truly her time of healing. This is a very long journey we have taken and I am so very proud of Alicia.

Day +97

The scope went very well this morning except that transport got here early and I was in the shower so I had to rush and take my make up bag with me to the OR. So Alicia went in to get the scope with make up also, since she always wants me to make up her face when she sees me doing it.

The scope only took about 45 minutes and the GI doctor came out and told me the best news that I have heard in almost 70 days. He said that with looking at the scope that the GVHD in her tummy is GONE!!!!!!!!!!!!!!!!!!!! Yes you read it right it is GONE!!!!!!!!!!!!!!!!!!!!! He said the Biopsy will tell it all. I am soooooooooooooooooooo happy. They will also test with the Biopsy for other virus's and things to try to determine where the tummy pain and poop is coming from, but we have defeated the hurdle of GVH in her tummy and man was that a HARD hurdle. I am sure there will be other reasons for her tummy pain but the Doctor said that will be able to be fixed with the right medicine as soo as the results come back tomorrow.

The GVH of her skin is a different hurdle. They are saying that it looks alot better but to me it still looks pretty bad. It is spreading down her legs and arms but her back and tummy do look alot better. It is still peeling but not half as bad a it was. So hopefully this means that the meds she is on are indeed working to fight the GVH and all of this may soon be over.

She has not had a fever in a few days and I think they are going to take off the Vancomycin tomorrow which is usually when she spikes another fever so please keep your fingers crossed that this will not happen.

Dr Davie's talked today about starting to do her 100 day work up but I am not sure when that will be yet. Hopefully if its is indeed the sign I needed that everything is being treated as it should be then we might see the light at the end of the tunnel again soon.

As every might know our friend Samantha Mcarthy with FA also is inpatient here. I want to ask everyone to please include her in your prayers tonight. She is having issues with her tummy as well. She has caring bridge page. It is www.caringbridge.com/visit/samanthamccarthy
And please do not forget my little friend Abby patterson, she also is having alot of problems and needs every ones prayers.

Day +95

Well today is the start of a new week and that means a new doctor in rounds. I don't know if I was just tired or if the doctor seen the frustration in my face when I went out in the hall o hear what he had to say. But needless to say I think I my finally be getting some answers I hope.

I basically just told him that I am very very tired and all I want is some answers as to what is going on with my baby. I told him that we have been doing the same things for months only lowering some and raising some meds and taking some away only to add them back and I am tired of it.

He then asked me what I wanted and I told him I want to know what is wrong and I want a plan to fix it and I want to stick with the plan long enough for it to work!!!! I then told him that I want to know if it is still the GVH that is causing her all of the tummy pains and all of the poop because we have been treating the GVH for months and I do not see any change at all. I told him I wanted another scope done to see if the GVH is getting any better or getting worse and if there was something else going on inside also. I told him that if it was still the GVH then I want a plan that will treat it better and I want to stick with it. I told him if she had broke her leg she would of had a cast on for nine weeks. They would not take off the cast every week and try to have her walk only to find out she did not have enough time to heal and put it back on. I am just so very frustrated and I want Alicia better.

So I got my way. The scope is set for Wednesday morning. I should have answers finally by Wednesday night!!!!!!!!!!!!!!!!

I finally feel a little hope again I just hope that this will be the beginning to healing my baby. I might be wrong and what they are doing might be what needs to be done but at least I will have a little peace and trust back on my side. Please keep praying for Alicia.

Day +94

Yesterday was PERFECT!!!!!!!!!!!!!!!!!!!!! Alicia was sooooooo happy to see Mommy and Daddy. There was not one flaw yesterday, We treasured every second we had and it was awesome.

Alicia had no fevers or issue's and she even ate a little for Mommy, She was showing Mommy and Daddy how much of a big girl she was. It sucked really bad that they could only stay for a short time but it could not of been more perfect.

They arrived around 8pm ( with time change ) and Alicia had a HUGE smile on her face when they walked in. The two hours before they got her Alicia kept saying "you find mommy and daddy" it was so cute. They spent a couple of hours here until Alicia got tired and then we layed her down and we went to Walmart to stock Alicia up with some winter clothes. I did not plan on being here trough the winter so I only brought a few warm clothes for her so Erika made sure she was had plenty and a winter coat as well.

Saturday morning we went to breakfast and came back to the Hospital before Alicia woke up. It was so nice to see Erika wake up Alicia and to hear the two of them made me cry. Yes there were many wet eyes Saturday ( even daddy ). The three of them played so much and I just sat back and enjoyed every second. Erika even handle seeing Alicia's skin the way it is ( and it is still looking pretty horrible.) I think that is what worried me the most. Dr Joedel came in and explained what was going on with Alicia's skin and what they were doing to fix it and let Erika ask any questions she had. Erika felt way better after the talk with the Doctor. Here are a few pictures of when we got to the hospital after breakfast Saturday.


As you can tell they just woke her up and she was still yawning. The pillow is what a lady made at the hospital here. She wanted her Mommy to have it.


This one Erika was trying to give her some of her hair for the picture.

Alicia also got a private time in a playroom on the 7 th floor. They shut down a playroom and sterilized everything and Alicia got 2 hours of private time. We had so much fun. It was so funny watching Erika push the pole and Anshon push Alicia. Erika kept running into everything, even me, we laughed so hard. When we got in the room the first thing Alicia chose to play with was a doctor kit. ( of course ) and since Theo was not with us Mommy and Daddy got to be the patients. We even tried doll houses and little figurines but No Alicia wanted to play Doctor, GO FIGURE!!!!!
Her is a picture when Erika was the patient.

Finally we found something that would take her away fron the doctor toys and it was the play kitchen area. I had left the room for a little while but when I got back they told me how much fun they had. Alicia and Daddy made Pizza.................

This is of all five of us, ( me Mommy Daddy Alicia and Obama. )

Well Alicia did not make it the full two hours. She started to get a tummy ache and wanted to go back to her room.

When we finally got Alicia settled back down and Mommy and Daddy and her were playing I decided it was time to get some ME time. I went to the RMH for a nap but I couldn't sleep so I decided to take a bubble bath and just soak in the tub and I even got to shave my legs!!!!!!!!!!!!!!! ( the smallest things excite me now!!!!!!! ) usually i have to take a shower in the parent bathroom and I am always rushing so I can get back to Alicia or my friend Kelly is waiting ( lol I really do try to hurry Kelly ) so the Bath thing yesterday felt AWESOME. Erika called a few hours later and said Alicia was very tired ad wanted to shut off the lights so we went to dinner at that time.

I had the BEST dinner I think I have ever had. We went to Longhorn Steak House, ( thanks Dianne) The steak melted in my mouth. It was the best food I have ever had in Cincinnati. Erika has something called Crab Bake with her steak and it was soooooooooo good. She even licked the bowl. We had such a good time, we laughed the whole time ( maybe that was because of the Margarita's )

After dinner we went back to the hospital and they woke Alicia up and spent another hour with her and then decided to go back to the RMH and sleep for a while before they got on the road. It was almost Midnight before they left so I was so glad they did not try to drive through the night.

Around 6 am this morning i woke up to change and check on Alicia and a nurse told me her Mommy and Daddy had just sneaked in and gave her a kiss good bye. They did not even wake me, I didn't know if I should of been mad or not but after talking to Erika she said I was snoring and she said there was no way she was going to wake me up because I needed my sleep so I was thankful not mad.

And that was our day yesterday. It was PERFECT!!!!!!!!!!!!!! They are coming back up the weekend before Alicia's Birthday but this time they are bringing the boys and they are staying for five days. I can not wait. I wish they could come sooner but they have to save for the plane tickets. Yes they are flying hopefully.

Alicia is having a good day today also. She has already ate a little and is giving theo his meds right now.

Please keep Abby in your prayers today. Her mom is my very good friend Reid. I am sure I have told everyone about her, Abby was admitted a couple of days ago for a fever but today she has a temp as high as 105. Her web site is carepages visit Abbypatterson.

Day +91

Alicia had a GREAT day yesterday. I was so excited, I know to many what I am about to say probably does not sound like a big deal but it was HUGE for me. Any way I walked into Alicia's room and for the first time in almost 2 months I seen an EMPTY plate!!!!!!!!!!!!!!!! I almost cried. She was so proud she kept saying " Look Mee-Ma all gone". It only had four french toast sticks on it but it was EMPTY!!!!!!!!!!!!!!!!!!!!!!!!!!

She also went down for therapy yesterday and they said she did awesome. She even stood up for almost 30 minutes playing and even took a few steps. The therapist said she had not seen Alicia in such a good mood in a very long time. They said she laughed and was very cooperative.

Her skin is still by far better. It still looks very bad. I have been keeping her covered in steroid cream and they have added another type of GVH med called MMF on top of the other two she is already on and gave her an extra infusion of amixaflex which she usually gets once a week to help fight the GVH.

Her Ultrasound came back that everything looked good so it has to be the GVH flaring up. Hopefully they can get it under control.

Now with all of the positive things going our was Alicia just spiked another Fever this morning, we still haven't found out the reason for the last three or four fevers ( I lost count ) so we probably will not know why this one happened either. Her temp is down now so hopefully it stays down.

Mommy and Daddy will be her tomorrow we are so excited!!!!!!!!!!!!!!!!!! Please keep Alicia in your prayers.

Day +89

GOOD NEWS!!!!!!!! The ultra sound came back and everything looked normal, her liver numbers are coming down and the rest of her organs look to be fine. I was so happy to heat that and that leads me back to where I keep saying it is the GVH.

She got an extra dose of the med for GVH last night. It is an infusion that takes about four hours and they have to monitor her vitals very closely, every 15 to 30 minutes and the infusion start at 12:45 am so it was a very long night. I did not mind though because hopefully this will make Alicia start feeling better.

Her skin is looking a lot worse to me though. She is peeling so bad that her shirt is sticking to her skin and coming off when I take her shirt off. She is such a strong little girl she doesn't even cry. I bathed her with just warm water this morning because I didn't want to irritate her skin anymore than it is, but just my luck I must of washed her little legs to hard because she got petichai spots all over them. I swear I was very gentle.

She is asleep now due to the benadryl she just received before they give her platelets. Today her platelets were down to 25. They usually let her go a little lower than that but she had a little blood in her stool last night so she will get platelets today instead of tomorrow. The rest of her counts look very good. Her HBG is 11.7 and her WBC is 8.1 and her ANC is 7.09.

Denise is recovering very well. This morning she was texting me and not making much since but her husband told me they have her on some very good pain med so I am sure she is a little loopy.

4 (3 1/2 ) days til Mommy and Daddy. Erika called this morning and she is very excited. Hopefully Alicia will be feeling a little better so we can take her to the RMH for a couple of hours.

Please keep Anthony Negrin in your prayers tonight and tomorrow. He will be getting his 3rd transplant. He has FA also and me and his mom have became close. Also keep all of the other BMT patients here in your prayers with or without FA. Hannah, Nas, Blake, Issabelle, Kendra, Ryan, Albert, Tana, Stacy, Brandon, Tana and all of the rest. And we can not forget my girl ABBY!!!! even though she is not inpatient she still needs our prayers.

Day +88

Alicia is still having major issue's with tummy pains. Go figure the one day she is finally asking for food I can not give her any. She has Been NPO since this morning because they are going to do an ultrasound on her liver in about an hour. I am relieved about that so maybe now I will get some answers as to wha tis going on with her liver. As soon as that is over she is asking for pudding!!!!!!!!!!!!!!!! Thank goodness she is asking for food.

Her weight went down even more today, I do not know how much more wieght she can afford to lose. She is still not able to stand on her own. She is sooo weak and very little. Hopefully they can find out what is going on so she can build some strength.

There is a new doctor on rounds this week. She seemed concerned with the way Alicia's GVH rash is looking. I hope she can shed some light as to why it is looking so bad, I hae a picture that i will post at the end of this update but it is kinda bad so anyone can chose to see it if you would like if not I understand, ( Teresa you might want to see it before Emma does cause it does not look that good) It does not hurt or itch Alicia it is just not very good looking.

4 days til Mommy and Daddy get here. Alicia talked to her Daddy and told him last night he needed to hurry and get here. It was so cute when she said it. I plan on sleeping Saturday away but when the day gets here I will probably be to excited myself to sleep but I promise everyone that I will take some much needed time to myself and maybe just take a walk or watch a good movie without the sounds of beeping machines or nurse's coming in and out and NO bad news on that day!!!!!!!!!!!!!!!!!!!

Denise just came out of surgery about an hour ago. My brother in law called and said everything went fine. I am so relieved about that. She has been on my mind all morning.

Well thank you everyone for all of your prayers, the potable ultrasound just got here so I will let everyone know as soon as I know something.

Here is the picture of her Rash.................

update on what doctor said

I just had rounds with the Doctor and I am sure she could see the frustration and concern I had. They are running a lot of different tests today, one is to look for Antibodies against her Red Cells.She does not think that the drop in her counts has anything to do with the GVH but I am still not convinced. She did assure me though that they are watching Alicia close which made me feel a little better. There is still no reason for the fevers yet which concerns me also. I keep hearing that there might never be a reason for them but that was not what I wanted to hear and they know that. There is a reason and now that they are coming and going more often makes me think that surely there will be an explanation as to why.

I will update more as I get any news

Day +87

Well Alicia had more fevers last night. I think I am either getting very frustrated or very tired but either way when the doctors get her in a little while they might not like what I have to say. I NEED answers.

My baby does not seem to be getting better. Now her HBG dropped from 10.1 to 7.3 over night. I made them repeat the CBC's twice this morning but they came back the same. I am so very worried about Alicia. She is getting so small. She weighed 13.7 kg when we were admitted 3 months ago and today she is at 11.9 kg, Her little legs are like sticks. I try to get her out of bed and make her walk everyday but when I miss a day due to fevers or infusions it sets her back so much.

She is so very weak. I am kind of relieved that they put her back on IV nutrition's even though I feel like I failed in getting her to eat. At least now I know she is getting what calories she needs through the day.

She is also off of all oral meds as of yesterday. This should give her tummy time to heal. It was so funny because Alicia kept telling me that it was time for her medicine yesterday. She did not understand when I told her it was going through her line and not her tube anymore. She always got to help push her meds in her tube and she couldn't or didn't want to understand why she wasn't doing it yesterday. So every time she kept telling me that she needed her medicine I told her NO that it was in her line and she would tell me No that I had to put it in her tube and once again I would tell her No so she would push the nurse's button. I kept laughing but Alicia was getting very mad. She even told the Nurse she had to NOW cause the doctor said so. After about the tenth time she pushed the button I finally had to get stern with her cause I am sure the nurse at the desk was getting irritated. ( O well)

I feel like I am about to lose it some days. I am sooooooo glad her Mommy will be here soon and my sister Denise will be back as soon as she recovers from the surgery she is having tomorrow. That is also on my mind, I am worried for her. As soon as she recovers she is coming here for a full week. She is such a huge help.

Well the doctors are here so I will be right back with news hopefully...........

Day +86

I want to start by saying that everyone in the Gulf area is in our prayers. My VERY VERY VERY best friend lives in Houston, she called me at 6am (here) 5am (there) and it was right when the eye of the storm was 20 miles east of Houston. They had no power or a radio so I turned on the Tv in the parent lounge and gave her all the info I could until she finally got signal on a news channel on her radio. I pray the water does not rise any more and that my Best Friend is OK.

Now for the update on Alicia..... Last night was maybe not as bad as "Ike" but once again Alicia has another fever. She spiked one and got as high as 102 around 1am. They did the usual for the millionth time and pulled cultures and started antibiotics. Still no reason as to why.

She also had to have a new NG put in around 9pm. The one she had down her nose had gotten to stretched at the end and the feeds which they started last night again would not stay connected so they were leaking everywhere. Alicia hates to have the tube put down but who would???? I was freakin tripping when I decided to have it done. I could not decide weather to stay with her and stand back and listen to her cry for me and more than likely I would of had them stop or to just leave the room and stay away for fifteen so it could get done because I know that it really needed changed. So i opted on my second choice and left the room before they came in with all of the stuff to change it. I went down stairs and walked round for twenty minutes and came back up and when I walked back in Alicia was pointing at her new tube wanting me to sit down and look at it. I gave her a huge hug and told her I did not know and that it was very pretty and she smiled and that was the end of that. The nurses said she did very well and they didn't even have to hold her down. They said once she realized what was about to happen that she kept very still and did not move. I am so proud of her and now I am glad I did not stay, One thing that I have with Alicia is the trust and protection and I did not want her to stop feeling either of those So that is why I chose to leave.

Now to this morning. Alicia's temp has went down a little but now she is having issue's with her blood pressure. Now her pressure is dropping so the Doctor in rounds changed every thing back to square one. She stopped all tubal feeds which I agree with since they are just going straight through her and now her stools are back to pure watery. She has also changed all of her PO meds back to oral and started her on IV nutrition's called TPN again. They want to give her gut a rest. They had tried this once before and that was when she was getting a little better about a month ago. But they said they are not rushing it this time. They think all of the tummy pain is from all the changes so they really think her tummy needs rest. This they said will take at least another two weeks so it looks like we will be here til our 100 day mark.

On the good note her Liver numbers are coming down finally. I was happy to hear that and she did very well with the infusion yesterday that they are giving her in place of the Voriconizol.

Mommy and Daddy will be here in 6 days. Alicia is so happy. She keeps asking for her Mommy and Daddy. We are doing the count down song everyday. I also can not wait. I need to rest and get away from here for a while so I am also doing the count down song.

Please continue to pray for Alicia and also for my best friend in Houston, Lisa, ans all of the others who have lost their home and other things in the horrible storm.

Day +84

The CBC"S this morning show that Alicia's liver enzyme numbers are still rising. The doctors want to give her another day or two without the Voriconizole to see if they start to decrease before they make any assumptions. I still believe it has something to do with the GVHD because her stools are getting worse and more frequent today and she is not feeling well at all. They did decide to go back up on the dosage of steroids she is getting since they were starting to wein her and it seems her GVHD is still quite active. They started her on the medicine to protect her liver which is good news.

She is also loosing more weight which she defiantly can not afford to do. She is sooooo tiny already and her little legs are so fragile. She is having a hard time walking again but therapy and myself keeps her walking every day so we can keep working her legs out. ( I promise Mommy and Daddy we are walking every day )

Her appetite has also decreased alot so they are going to start her on over night feeds again either tonight or tomorrow evening. I am kinda relieved they are going to go ahead and do that since she is not eating that much.

GOOD NEWS!!!!!!!!!!!!!! Erika and Anshon are driving up this weekend. Alicia is sooooo excited, She misses her Mommy and Daddy so much. They couldn't afford to fly but Erika's boss is helping them rent a car so they will be here early next Friday morning. They will only be able to stay for the weekend again but the important thing is they will be here. Hopefully Alicia will be out of the hospital by then and can spend the whole weekend with them and I can get some rest again,

The Doctor said this morning that if her Liver numbers come down we should be out at the beginning of they week but I just said to myself that I will not get my hopes up no matter what until I am definite that the time has came for real. Please keep praying for Alicia, I know the Lord hears all of the prayers being said and I have faith in the Lord that he is touching my baby and he is keeping her here for a reason. Thank you to everyone who is following Alicia' Journey.

Day +83

Well the third time is not a charm for us!!!!! I just got a visit from Alicia's Head Nurse and we are not going home once again. She came to tell me that they are concerned because her Liver Enzyme numbers have more than tripled . They believe it is caused by a type of medicine called Voriconizole, it is an anti-fungal med. They have stopped that med and are starting her back on Amlodioine which is supposed to protect her Liver. If the numbers go down than they wil start her on a different type of anti-fungal. So the end result is we are not leaving tomorrow. I can not do anything but laugh. I was not shocked one bit!!!!!!!!!

She does seem to be feeling alot better. She didn't eat much yesterday but today has started off a little better. She is giving Theo his meds right now. Poor Theo gets more meds than Alicia does.

There are more doctors tht just walked in so I will update as soon as I know anything else. Just another day at CCMCH

Day +80

Alicia had a great day today. Her fever did not last long last night and Dr Davie's did not start feeds or Tpn's. She said that It will take time and she wants Alicia to eat on her own. And once again she was right. Dr Davies is the reason I am so far from home and she has proven her self to me many many times. ALICIA ATE ALOT TODAY!!!!!!!!!!!!!!!!!!!!!!!!!!!! She got another four hour pass today and we went to the RMH. I put Alicia's new Dora bike together which I feel will help her build her legs stronger. She also took another REAL bath. We had a really good day!!!!



This is a picture of Alicia leaving for her pass, notice she is pushing the stroller and she is not in it.......



and this is her coming back from pass, she stopped and got her friend Theo for a ride also, there was a nurse to the left of her and this is what she always does now when she See's one she does not know....



and this is of her good friend Albert and best friend THEO..........................

Next I would like to stress very hard on a subject that has been mentioned and has been bothering someone very very important to me. Today me and Erika had a long talk and she feels like she is letting Alicia down....... FIRST AND FOREMOST Erika you are an AWESOME Mommy. The sacrifices you are giving to be away from your, and I stress YOUR daughter are not hidden. I am very very very proud of you. You are a great Mommy. I promised you and Alicia from the beginning that I was going to see the both of you through this and I will forever hold my promise. If you feel like anyone looks down on you or questions why you can not be here all the time than that person is wrong for judging anyone. As long as we both know that you care and love Alicia as much as you do that should be all that matters. I want to let the world know that Erika is an AWESOME mom and I love and respect you forever Erika and I will bring your baby home to you soon!!!!!!!!!!!!!!!!!!!!!

These pictures show how much the both of you love each other and that you are here for your baby. Alicia adores her Mommy and Erika that makes me so proud...........................

look at the smile on Alicia's face!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

And look at the smile on your face!!!!!!!!!!!!!!!!

And this picture says it all!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Day +79 ( 1 hour til Day +80!!!!)

I want to start by saying I am sorry for not keeping up on the updates on Alicia. The further along we get the harder it is getting for me. I am still very strong but I am wearing down fast. I miss home more than ever and I am trying to keep what strength I have left to focus on Alicia. I know that there are so many people that care and are praying for Alicia so I am truly sorry for slacking on keeping everyone up to date on how she is doing.

Alicia just got another fever about an hour ago. They gave her Tylenol and took cultures but the cultures from the last fever are still all negative so I don't have much hope that there will be a reason for this one. She has had a couple of pretty good days. Her tummy seems to be settling down a bit since they took her off of NG feeds and TPN which they did four days ago but today she has not ate anything at all. I mean NOTHING!!!!!!!!!! I have a feeling tomorrow Dr Davies will start her back on feeds so I pray this does not start her tummy to hurting again. She is still having a very hard time walking. Her little legs have became so thin. I still make her walk at least once a day and I bought her a little big wheel for the RMH to work on gaining her strength back in her legs so I hope that helps.

We are set to be discharged again on Wednesday the 10th. ( Nicholas's Birthday!!!!!!!!!) I decided this time not to tell Alicia just encase we don't which is what has happened the last two times.

Good News..... A wonderful friend referred Alicia to be featured in one of the news letters for "A Caddy For a Cure" and I was contacted yesterday by Russ Holden and he did a little story on Alicia and she is being featured in the nest news letter. I cried when I read what he had wrote, I am not for sure when it will come out but it should be soon. Caddy for a Cure does a Huge fund raiser and donates alot of the money to help research with FARF. It was such an Honor for Alicia to be featured.

Please pray that this fever does not hang around like the rest. And I will update tomorrow as soon as I talk with Dr Davies.

Day +77

Alicia finally broke her fever yesterday after on and off for what seemed like forever. There is still no explanation as to why the fever was here except it was close for her time to get out. She now is having issues with her blood pressure and they have been giving her meds to try to get it under control. So hopefully we will be geting out late next week, that is the plan as of now but I am not getting my hopes up this time. I by far am not ready to have her out with all the problems she keeps having. I am though very tired and wish this would all end so we can go home to our family which I miss sooooooo much.

She is still having alot of issues with her tummy but since they stopped the tube feeds all together she seems to be complaining alot less. Last night we did have a huge episode with Alicia even balling over saying her tummy hurt so they gave her more meds and it seemed to work also. Alicia is a walking Pharmacy.

Therapy is working well with Alicia. She still is walking very slow but she is walking more upright and not bent over. She has also been walking by herself without holding any one's hands. She has came a long way.

I want to thank Diane John and Michelle for the very cute shirts you sent Alicia from your trip. Her favorite by far though was the sponge bob backpack!!! It was soooo cute.

Mommy and Daddy are planning on coming back real soon. Erika said they are trying for the end of this month. I sooooo hope they can find enough money to get here, Alicia misses them soooo much!!!!!!!!!

Thank you again everyone for keeping my baby in your prayers. Without you all and the Lord I would be lost.

Day +75

I can not believe that we only have 25 more days until Alicia's 100 day mark. And here we are still fighting this battle and the light went out again.

Alicia had a very bad night. Her temp is rising no matter what they give her. Dr Davies has ordered a chest x-ray and has put a halt on all of her feeds. I am not sure just what is going through Dr Davie's head but she is the best and I have 100% trust in her. She has also ordered blood cultures and stool samples which have not came back yet with results. She also has started her back on two Antibiotics and had mentioned in rounds that it is very likely that the bacteria is still in Alicia and maybe it is in her pic line now.

Alicia is sleeping right now. I am packing her in ice to try to cool her down but it is not working. I have not slept a wink last night.

So we are now doing the waiting game once again, and the light that was shining bright at the end of the tunnel has once again been turned off. I will let everyone know what we find out just as soon as I know something.

Please pray for Alicia!!!!!!!!!!!!!!!!! am sooooo worried again!!!!!!!!!!!!!

Pictures from Alicia's pass and Big Visit

Denise just e-mailed me some of the photo's she had taken, These are mostly from the 2nd day when we took her out after the zoo.......................

sorry I could not get this one to rotate, this is of Alicia getting ready to leave the hospital.....

This is one of Alicia, Kristian (far left, Kortnie middle and Cassie far right ) just out side of the BMT unit getting ready to get on elevator................................

And the one above is all four of them getting off of the elevator...........................

This is one of Alicia driving with Ne-Ne ( don't tell anyone cause she does not have her licence yet LOL..................................

and this is one of Alicia at the RMH......................................

Yes that is the remote in her hands, she seems to think she is the boss of that room also. Denise is sending me more and I will post them as soon as she does. Thank goodness I have Denise or I would not have any pictures of the whole weekend.

Day +74

THE PASS AND THE VISIT:

The pass was great!!!!!!!!!!!!!!!!!!! Alicia was so excited to go out side. I do not think she actually ealized that we were leaving the Hospital and when we walked out side I could hear her giggling in the stroller. I bent down to see if she was OK because as everyone knows I was a nervous wreck and I asked her what was wrong, my amazing little best friend told me......."I cry, I happy, I OK, I Can see the Sun......." Just like that in those exact words. I about fell to my knee's and thanked the Lord for such a blessing. Nothing could steal my Joy at that moment.

When we got to the RMH we were only there for about 30 minutes when Denise and Kelli and the girls made it here. I was so happy to see my family. My niece's are getting so big. My sister Kelli made it out of the state of Kansas!!!!!!!!!!!!!! I was sooooo happy to see everyone. I was so happy to see Denise, she looked very wore out but I would be too if I drove so far, endured what she thought was a heart attack, lost alot of sleep, on top of her problems which she is h
having surgery for next week. She is the BEST!!!!!!!!!!!!!!

Alicia was soooo excited to see them and they were just as excited to see her. They played games and took turns pushing her in her stroller and took alot of pictures, ( which I have none of and I will explains this later when I get over being mad about it. ) Everyone stayed at the RMH except Denise. Denise went and found the hotel and checked in and went to sleep for the afternoon. Alicia had to be back at the hospital by 6pm, so me kelli and the kids brought her back and hung out in her room with her til NE-Ne woke up and came to the hospital for her sleep over with Alicia and A HUGE break for Mee-Ma.

Denise got back around 7pm and we all went to dinner while Alicia took a nap. She was sooo exhausted. The girls loved being in her hospital room and playing with her. Alicia smiled the whole time. After dinner Denise came back here and stayed with her while Kelli and I and the girls went to the hotel. The girls swam for a while and me and Kelli caught up on all of the missed time.

The next day ( Sunday ) Denise came to the hotel and picked us up and we brought Kelli back to the Hospital so she could spend some time with Alicia, Kortnie her oldest stayed here as well and Denise and I and the two youngest went to Wal-Mart so I could stock up on all that I need for the RMH. Denise then went back to the hospital with Alicia and Kelli and I took the girls to the Zoo for a little while. Around 5pm we decided to take Alicia on another pass to the RMH so they could all spend a little time with her before they left. Denise even took her for a little drive around the parking lot. It has been so long since she has been in a car. Denise even let her steer, that made her very happy.

Then the Good-Byes came. I can honestly say that this has been the hardest good bye so far. I think maybe because I actually seen this one. I got smart with the last one with her Mommy and Daddy and did not see it with my own eyes, but I had no way of getting around this one. Denise had a hard time with it and so did Alicia. I just wish this was all over so we can go home!!!!!!!!!!!

Denise and Kelli and the girls made it home safe around two hours ago. I was soooo very glad to see them.

Our pass today was very good also. Alicia took a bath today in a real tub for the first time in 3 months. She was very unsure of it at first but when she was actually in the water she started to calm down and enjoy it. She ate more than she has in a very very very long time today at the RMH. She played and smiled and she looked very happy. Then after about 2 1/2 hours there she said she was tired and her Tummy was hurting ( her tummy has been hurting a long time now and I am starting to get concerned). I layed her down and she went right to sleep. I thought she had to be very tired due to the Big weekend and all of the excitement. After about an hour I felt her head and sure enough she felt warm so I decided to bring her back. She was so upset. It made me cry to see her cry. She did not want to come back here. She kept sating "No Hospital" but after her tummy was hurting worse she said ok cause she knew she was getting medicine that would help her tummy( that is a shame )

Sure enough when we got back to the hospital she has a temp. It is now at 38.7 which is around 101.2. They are drawing more blood samples and poop samples and giving her meds for her tummy pain. I really think there is something going on inside her tummy. The fever now even convinces me more that there is something not right. So here we go again.

I took alot of pictures this weekend and that is why i was saying I was mad again earlier. But once again retard me did not have the memory card in the camera. LOL Denise took alot also so she is e-mailing them to me tomorrow and i will post some then.

Please continue to pray for Alicia, I will let everyone know how she is doing tomorrow and what Dr Davies decides to do about the tummy and fever issues.