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!

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

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.

an interesting link I found

http://www.poz.com/index.shtml

best laid plans of mice and men and all that

the doctor I set the kids up to see called me back and said for him to see them would be tantamount to malpractice as they need a specialised team of doctors and his ID office does not specialise in hiv or pediatrics and it is completely out of the spectrum of his practice. The children he usually sees have things like Pneumonia or something that can be treated like a little adult with dosage changes. Hiv he says can NOT be treated like a little adult. it is a very specialised disease and for the best of the child they need to see a team of doctors and psychologists who specialise in this to help them as they develop and grow and treat their disease as well as their concerns.  So I thought it would be so nice to only have to drive one and half hours and NOT into the big city for them to see doctors. But it looks like its off to the big city. there are only two places in the state that specialise in this. and one in the neighboring state. so I have to go to a HUGE medical system(famous one) or the University one. The doctor I spoke with recommended that I go to the U because they have higher numbers and thus more experience and better treatment care.  so I will have to make new appointments at the U. I already have to drive to that city for my kids who go to Shriners for their ortho
condition.  so I guess I will be doing a lot of driving. I HATE driving in the city and my husband will probably not be able to join me every time so I guess I will have to get used to that too.

after a game of phone chase....

I have set the kids up with an ID doc in a nearby larger city. Shortly after we arrive home they will go all four at once to see that Dr. We live in a small town and I KNOW there are no ID doctors here.  I also know that in receiving care here their status will quickly become the talk of the town.  Yes I know that there are Hipaa rules. but I also know that small towns, and this one particularly will talk. I have no doubt at all that it would very quickly become public knowledge.  While I don't see any problems with them being positive, I also don't feel their private business needs to be spread about town. This is also why this blog will not name them. I should think of nicknames for them so as to write about our trials and trevails while keeping track of who has what and when. I think I will call them "Freckles", "Glamgirl" "LittleBit" and "AllBoy". We have other children but I will have to make up names for them as I go along. Too many to name all at once!

I do not know anyone with hiv. At least that I know of, as I know it is around, just not as visual as some other diseases. I am at a loss for how this will go. I have no one to guide me. No one to say yep, I get that. In writing this blog I am hoping to learn from others as well as have a place to record my thoughts and questions and be able to  go back and see how things have changed, evolved, what we have learned.

Retrovir/ziduvodine

we have been told that all of the children are on a single dose of this medication a day. They appear to be healthy no one is coughing or appears ill. Two of them HAVE had tuberculosis in the past but were treated and are not currently ill. There is a snotty nose going around the orphanage, one of our boys had it now the other does. but it hasn't slowed them much. they aren't ACTING sick.  we don't know anything about their counts. Won't know anything about that until they get home. They sure are great kids. We sure love them and they always come running with hugs and kisses when we arrive at the children's home where they reside.  This is going to be a wild adventure and I know we will have some stuff to learn along the way, but they are so worth it.