Home, but struggling to eat

Although Alec appears to have an appetite, he claims to still not be able to taste anything. I continue to just puree his food with his shake. His weight is maintained, not losing not gaining. I am tempted to bump up his calories a little. He keeps asking for food but when we get if for him or make a meal he wants, nothing. He just spits it out and says he doesn't taste anything.
I ask him what he tastes when he drinks his shakes, I mean after all they are gross, he says nothing just the shake.
I spoke to Chrissy and she said Stanley is tasting food, I'm sorry for those who don't know Stanley, he is an awesome kid we met along the way, he also had a transplant because his cancer relapsed.
I spoke to Alec's Dr. again and they said as long as he is taking the shakes it's fine, as a mother it's not natural to see your grown son not chewing and swallow food. Sometimes I wonder if he is to tired for the effort it involves to chew and swallow food. Is it is easier just to have Mom feed me through the syringe. I am going to start having him drink the shake on his own, as oppose to me hand feeding him, maybe that might encourage him to eat.
Other than that he is just enjoying being home. His favorite teacher started tutoring him again, everyday he asks is Ms. Moran coming today? Academically he is doing well.
We don't have clinic next week, yay. His counts are really good. His platelets went from 93 to 275 on his own, yay!! Go Platelets, Go platelets!
I am sorry I havn't updated sooner but between feeding him, meds, cleaning, Sean and Kevs homework, time runs out. Thanks for all the e-mails though. It took me forever to go through all of them tonight.
Till next time
-Amy xoxox
Please keep our friends in your prayers, Hannah (8), Stanley (8), Teeya (7, I think), Danny (3), Denton (11), Joseph (3), and Gwyn (2) in your prayers as well. Some sweet friends we have met on the way.

We did a driveby to see Jack, and he was so excited to hear Alec was coming home, he made a special sign.

* Thank you Erin, Kevin and the gang for taking care of our puppy, he looks really happy :0)

Thank you to our friends for decorating our home for Alec's arrival!

Nice View and All, But I'm Outta Here :0)

We Are Home!!

It has been a long time coming. Although Alec's fight is far from over 5 years and counting, the Dr.'s feel he is strong enough to come home. His meds are as follows:
Acyclovir
Fluconazole
Xopenex
Pulmicort
Previcid
Phenergen
Zofran
Tyonal
Magnesium
Megase
Bactrim
He is still not eating anything!!! I have to make him special shakes 3 times a day, he drinks them with no complaints. Although Alec has never complained about anything in his life. This morning he tried a scrambled egg and spit it out and then we tried Cocoa Puffs and spit it out. I have made his favorite foods and even foods he never really liked, and still nothing. The Dr. said just keep going with the shakes. I am now adding more ice cream to them and I even snuck in some peanut butter in this mornings batch. I know he didn't get his taste buds back yet because he didn't even notice the peanut butter flavoring.
He is sleeping alot. He has alot of leg pain, his Dr.'s want him to start in home physical therapy, so I am making arrangements for that.
His hearing continues to decline, it is inevitable he will need hearing aids. At the present time I have a baby monitor in the living room and keep the other half near me so I can speak to him through the monitor or else I am yelling. The T.V. is usually blasting when it's on. I can't take him to the Speech and Hearing center yet, his Dr.s are not comfortable with me taking him any where but to clinic.
His blood pressure has been beautiful lately, I just took it before I sat down to type this 99/65 :0) and of course no temperature. His numbers and ANC continue to climb. He is even producing his own platelets now, he went from 79 to 93 on his own, yay!! He is usually transfused at 30. I tried uploading some pictures before but it didn't work, I'll try again when I can. Well I have to run, baby needs a bottle and Alec is due for medication.
Love to all,
Amy

Just passing some time decorating these boring windows!

With good news there is always bad news

So close, Alec had a positive culture come back on his broviack. He is now back on vancomyicin. Another culture was done on his port, we have to wait 48 hrs to see if it grows anything. We were just about set to come home. His ANC has been holding steady and he is taking all his meds by mouth, still vomiting on occasion, but that is to be expected. He has been off of his IV nutrition and his weight is holding steady. He continues to just drink the shake from nutrition which the Dr.'s are satisfied with.
I met with nutrition today and they talked to me about the diet Alec needs to be on once released from the hospital, all of which I knew, no fresh fruits and veggies, no fast food, not even pizza. Everything has to be cooked at home and washed thoroughly. Alec has to have his own condiments in small portions.
Alec was looking forward to going home shortly, so I had to break the news to him that it looks like we might have to stay longer because one of his test from his tubies came back that there was a buggie in it. He was a little upset, but drawing pictures of lions on the window cheered him up a bit. (picture will be uploaded tomorrow)

Antibiotic cutbacks

Alec is off of his vancomycin and cefipime. He is taking Acyclovir and his antifungal. He will be going home on those meds along with Bactrim to prevent pnemonia. His blood pressure meds have been discontinued as well. Blood pressure is holding steady :0) He continues to ask for food, steak and steak sauce, grilled cheese, bologna, but he just keeps spitting it out. He is though drinking the vanilla shakes that come up from the nutrition, that right there is 900 calories. His taste buds are still burnt, he tastes nothing. I spoke to his nurse last night about it, she is a breast cancer survivor and went through chemo, not high doses, but she said the chemo does knock out the taste buds for a while. To date Alec has had 3 nurses who are breast cancer survivors I pray for them also.
He wanted to get dressed today, he is wearing a pair of jeans, he is tired of pj's and who could blame him after a month. The air purifiers (IQ Air)have arrived from California and are up and running. Mark is home continuing to prep the house for Alec's homecomming which we hope is soon.
Alec's MRI's are scheduled for Nov 16th and 19th; 1st part is for the brain second part for the spine. This is going to be the most thankful thanksgiving ever, I just know it!
As always, thank you for all your prayers, calls and e-mails.
Love,
Amy

This is Alec's room in the transplant unit, Mommy decorated it :0)

Here is the picture that our friend Hannah drew for Alec, it is our doggie Jack :-)

Creativity, A beautiful thing!

This Alec drew not to long ago. He is walking Jack, look at how happy they are.

Need platelets

Today Alec will be getting platelets, his labs yesterday were inaccurate about his platelet counts because today he is at 35. He is getting another chest x-ray today and will be discontinuing his albuterol. He will be started on Megase to shake up his appetite a little. He still has not eaten anything yet and they had to adjust his TPN. He is up in spirits though.
My journey of sterilizing my home continues this weekend. The air purifiers should be arriving any day now so I can get those up and running.
Kevin visited Jack (the dog) yesterday and was so excited to see him. Thank you Erin for taking good care of our puppy for the next few months.
Love to all,
Amy

ANC Spike :0) BUT.. Not eating :(

Alec's ANC is off the wall. His numbers are amazing, his mouth sores are clearing up and scabbing but he is a constant picker. I am getting anxious for his MRI. We keep trying to get him to eat but he just won't. He thinks he wants something and you get it, and then nothing. He just spits it out.
He had a little case of insomnia last night, he just couldn't sleep. He is on albuterol treatments which I think is keeping him up. I asked them to change the times and they are 7am and 7pm now instead of 10 and 10.
I still haven't seen a really good smile yet no matter how much I try, it's really hard. I have to hold off on Sean's immunizations because Alec can't be exposed to recently immunized people, especially live viruses, MMR, polio and varicella. Considering we are just confined to home in any case it should be fine. I will be heading home Thursday night and I will post some pictures of his transplant and my lame attempts at drawing Darth Vader on his windows :) Although he thought it was great.
He is actually asking for the cookies that Hannah dropped off, yay I'll let you know.
Thanks Hannah and Kim!
Well I have to run.
Love,
Amy