life with 4.

I know its been awhile since I posted but to be honest I find I just dont think about their status that much. we get up go about our day, take meds, finish our day, take meds, and go to bed. there just is no time for worrying about hiv. Today we had checkup at PID doc. kids are doing well, and healthy. I hadnt noticed so much but little bit is looking so much healthier she said. rounder face, more filled out. Of course little bit doesnt like to eat much, not one little bit haha. but that is improving. they all had blood draws and survived. Freckles is the only one who made much of a fuss. Little bit had one big tear and that was it. Glam girl was awesome and said she had been poked plenty of times before and this was no big deal. All boy did great too, although I think he did better last time, but still no tears or fuss.

When we were finally done (appts started 1030, we left there at 230.....) I treated them to McDonalds. they loved that. I dont go to M very often. it isnt convenient, it isnt cheap, it isnt healthy. but I did today and they were happy.

I have been talking with the kids about their hiv. they wanted to know why they take meds and not some of our other kids. I explained that they have a virus and they take meds to keep the virus small. if the virus gets too big it will make them sick. Freckles cried when I told her that she would always have this virus and would always have to take meds.  Im not sure little bit understands much beyond he takes meds to keep the virus small. whatever a virus is. Im not sure All boy even cares. Glam girl takes her cues from freckles. I did not give them the name of the virus. I didnt want it to slip out at an inopportune moment and cause them problems. as everyone tells me, its ok to tell, but once you tell you cant UNtell it. so I want to wait a little bit until they are older and better understand english as well as better understand the disease.  so they know they have a virus. they know it wont go away. they know why they take meds. for now they are content with that and I guess I will just approach it as I always did talking about sex. I answer questions as they come up and I answer honestly but I dont tell them more than they want to know.

I am also learning as the kids learn more english that the country they came from is very misinformed about their disease. when kids went swimming, they weren't allowed to go. once when the other kids were done they let them in and then they drained the pool and scrubbed it. they always had their plates and cups washed last and kept seperate from the others.  I dont think twice about anyone in this house drinking from the same cup or eating off the same plate, much less AFTER its been washed!  I am very happy to have these kids here where they can know a normal life not one of exile. I sure do love them.

life goes on

after an all day visit to the doc all kids are now on pills! yes! no more liquid kaletra! no more liquids at all! No more wondering how much was getting into little bit and how much he was squirting. No more listening to All boy whine when I have to mix up his thick and yucky meds. no more having to have a bowl of jelly at my side at the ready to chase away the kaletra taste. so far it is going well with the pills. while they still think it ruins a perfectly good meal they are happy they dont have to take the liquids anymore.  They were also apparently very under medicated.

At the doctor they all had chest xrays and all had blood draws. the chest xrays went ok but the blood draws were a nightmare. At least for little bit. He was terrified. once the needle was actually IN his arm though he calmed down a lot.   I was nearly in tears from having to subject him to this but knowing it needed to be done.  I had a headache the rest of the day from all the screaming in my ear and hugging my neck while trying to get up and out of there! I dont know the results of any of their labs. the doctor is supposed to call me to make an appointment to come back in October. it was late when we finished the appt and the scheduling people were gone.

I have decided that I will tell people who ask (or when I put my foot in my mouth) that yes they have special needs, they are 6 7 and 8 and 8. kids that age rarely get adopted. especially the boys. that makes them special needs. so I can be truthful and yet retain certain information that I dont think anyone needz to know. I also asked the doctor about notifying the school and she said state law says we do NOT have to tell. so I dont plan to. this IS why universal precautions came about anyways so they SHOULD be already using them.

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!

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.

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.

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.

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!