Wednesday, August 25, 2010

out of a drug. had it called in to neighboring larger town. went there and they said oh it wont be in until tomorrow. grr. except they called this morning first thing to tell me it did NOT come in today. so now they are out of zidovir. who knows when it will come in. soon to be out of kaletra but hopefully not before our appt. I also looked up the drugs they take. each kid had one that was taken on empty stomach and I found that the absorption of THESE drugs is NOT affected by food or no food. only ONE, the bedtime one for one child, said a meal heavy in fat could affect it. since we dont eat high fat meals and he doesnt take that one until bedtime I decided to give them all the meds in the morning with breakfast and at night with dinner, not splitting up the single one that was to be given alone between meals. I checked also for intereaction between drugs, nothing. cant figure out why they had them taking them alone.I did discover though that if you mix the drug inside the capsule along with the colored part of the capsule(in water) the water/med turns that color, in this case blue. well BLUE medicine is way better than clear or white and have had no problem getting them to take it.  limiting meds to morning meal and evening meal(and the single bedtime one for one child) makes life a bit easier around here. I feel llike all I do is give out meds!

Wednesday, August 18, 2010

they have hiv?

I see my beautiful kids now that they are home and say wow! I am so lucky that I got to have them. then I remember why no one else in their country wanted them. They are such great kids. Lil bit is a bit of a wild thing, but glam girl and freckles are wonderful, all boy is doing well and is...well... all boy. = ) I feel like all I do though is give meds. breakfast its aluvia kaletra lamivir lamivudin between meals its stavudine and zidovir and dinner its aluvia kaletra lamivir lamivudin again and another one at bedtime for one kid. 6 or 7 meds times 4 kids is overwhealming! and some are take with food some are take on empty stomach. some kids are on this one and that one some are on that one not this one. but I really feel lucky to have them. I couldnt be happier with the way this turned out. They have fit right into our home and family. 

since we previously adopted 2 children with some orthopedic problems, people often ask if these kids have special needs. I usually say yes they are special and I need them. but if they press the issue it is hard for mne to say the right thing. I dont want to lie but at the same time I dont want to share either because most often it really isnt their business. I dont share my pap results with strangers why should I share my kids hiv status? but the state I live in is known for being "nice" and I have a hard time with being anything less. I need to come to a middle ground where I can still be nice but feel ok about not sharing.

Saturday, August 14, 2010

super hyperactivity?

one of the kids is SUPER EXTREMELY hyper. could be sensory needs, could be brain function, could it be one of the  many meds he takes? seriously this kid is beyond hyper. I cant cook because i have to keep the gas turned off or he is turning on burners and putting things in the microwave and pulling things off shelves and climbing things and opening the window(on the ThIRD FLOOR!) that has no screen or bars tossing things in the toilet jumping on the bed and so on. he just goes from one thing to the next. he jumps until someone makes him stop then he runs to something else until someone makes him stop and so on. I can not leave the stove for a second when cooking and yet I cant stay there because he is into things when I am not looking. he is on zidovir, lamiver, lamivudine, and kaletra.  I cant help but wonder if the meds have an effect on him that way.

Tuesday, August 10, 2010

update

I am with the children in Ukraine., All four kids are on several different medications. some are on this one and that one. others are on different ones. I feel like a pharmacy sometimes. some are to be taken at meals otehrs to be taken 30 mins before eating or one hour after. the kids are great and do pretty well taking their meds. Kaletra makes them whine and cry though! I usually give them an M and M or juice and that works out. They eat ALL the time. like 5 meals a day plus snacks. We are starting to adjust. but of course once they are settled here it will be time to hop a plane back to America.  overall they are doing well.

Monday, July 26, 2010

littlebit is sick again






I have heard that our "littlebit" is sick again. he was ill about 3 weeks ago. This worries me. I will feel a lot better when he is home with me. In speaking with the doctor when I made appointments I know that the medication the children are on is insufficient. they only medicate once a day. this can make the virus drug resistant. "

littlebit" is so tiny, the other kids are more of a healthy size and seem better able to fight off the bugs. "allboy" was sick when we were there, and he and "littlebit" were in the infirmary. Allboy recovered sooner than littlebit. and now littlebit is sick again. it hurts my heart that he is sick without his Mama there to care for him. but he doesnt know the love of a Mama so he doesnt realize what he is missing. I hope he feels better soon. poor littlebit.  I hope that his disease will be able to be controlled when he gets here. I worry for him. I worry about him. at age 6 and wears size 3T.  that is too small. Allboy is 8 and wears an 8, freckles is 8 and wears an 8, glamgirl is 7 and wears a 5.  Glamgirl and littlebit have both been very sick before, hospitalised because of it.  They should all be home here in the month of August. and it coudldnt possibly be soon enough for me!

Sunday, July 25, 2010

heart wrenching photo essay from many years ago

This photo essay is about a young man dying of AIDS. his family surrounds him as he passes. his caretaker also has AIDS and the family embraces him after the death of their son and care for him until his death.

I pray I never have to go through this with my children. But I am so happy that life is different now and if our children were dying of AIDS  we can demand that they be treated like anyone else. not isolated ,shut away to die. but with all the comfort cares and love of family.

http://www.life.com/image/first/in-gallery/45701/the-photo-that-brought-aids-home

Tuesday, July 20, 2010

after several calls to several places

we finally have an appt for the kids when they return to the states. boy THAT wasnt easy! we struggle to find medical care for our other special needs kids with ortho issues. I thought oh well their condition is rare so thats why its hard to find a doc. but it has been just as daunting to find a doctor to see the kids with hiv. one place said oh ok so they want hiv? I was like heck no they dont WANT it. I am not going to PAY you to give it to them, they already HAVE IT! I also found out that the medication they are on is not a theraputic amount and likely is making things worse rather than better. but there is nothing I can do about that until they get here and see the Dr. The doctor herself called and touched base with me about how her clinic works. She likes to make sure there is a translater there at least on first visits so she can get a sense of what the kids think of things, what they know about hiv, etc.  She is very familiar with international adoptees  She wants me to find a clinic more locally to see them for their regular child medical needs like ear aches and such.. will have to look into that. So the kids have an appt on Sept 1. will be a big day for sure. all 4 kids on one day. two at 1130 and two more at 330.  I forgot to ask her about notifying our school district. but the appt is before the beginning of school so there is time for that.