Poop, Potties, and Pity Parties

Well last night was....interesting.  I'll try to be delicate in explaining what happened but you need to know some of it to know about the possible miracle.  Yesterday they started her meds through her NG tube at about 1:00.  As the day went on, and on, and on her stomach started to really get big and rumbly but nothing was happening.  By 7:30 or so I tried to get her to go to sleep but she just couldn't.  I imagine she wasn't exactly comfortable.  Finally at 9:00 we started to get some results.  And by results I mean the floodgates opened!  Once I figured out that it was not stopping I stuck her on the potty and she proceeded to spend 2 solid hours from 9-11 pooping on the potty....non-stop.  This from the child who had never done it!  With the meds she couldn't control it so she had no choice.  By 10:30 she was going down hill fast.  This is a girl who needs her 6:30 bed time.  She started to say "I don't ever want to do this again.  I just want to go to bed."  I couldn't let her up becuase it literally wasn't stopping.  I did my best to entertain her and even fed her jello while she was sitting there to keep her mind off of her exhaustion.  Finally at 11:00 I realized that things were slowing down so I got her up.  I figured even if it was only for 10 minutes that was 10 minutes she could relax and lay down.  Right at that time her meds ended (yes that was 10 hours of continuous meds) so they unhooked the bag from her NG tube and she crashed.  The nurse came in for a vitals check at midnight and 4 but Oksana barely moved.  Finally at about 7:30 she woke up and she was.....well....covered in it.  The nurse and I got her all cleaned up and back on the potty again for just a short time.  The doctor checked her out and gave the OK for her to go home so by 10am we were on the road. 

She loved it when I climbed in her bed with her.  I thought 24 hours stuck in a room with her pooping would be a nightmare but we actually had a good time together!

Liquid diet.  The closest thing she could have to food was orange jello.  She was so sick of that by the end!

I only ate things she didn't like and I ate them hiding in a corner :).

They put 2 1/2 bags of this in her.  This was the very end of it.  It was a relief to see that gone!

Breakfast!!!  NG tube and IV free, she could finally eat food.  She chose a gluten free blueberry muffin and a banana.  She expressed her joy through the whole thing :).

Here is where the miracle kicks in.  She got home and I said "If you feel like you need to go to the bathroom I want you to yell 'POOP' and try your best to hold it until I get you on the potty."  Low and behold she has done it all day long!  At one point she was still going every 15 minutes or so and she would leak some but she would tell me every time and go on the potty.  I still can't believe it!  The reason it is a miracle is that after 8 years of hard core psych related poop issues she is pooping on the potty after only 24 hours in the hospital.  The reason it is a "possible" miracle is that I'm still not willing to bank on the fact that this is going to stick and we are through this.  After everything we've been through in the last 3 years with this issue I am having a hard time letting myself believe it is really going to all be over that fast.

I went to the store and grabbed a few little rewards to sweeten the deal.  If she can go a whole day without pooping in her pants she can choose a reward.  This NEVER would have worked before today but now that she is doing it and willing we can start to to use some reward systems to keep her motivated and make sure we stay on track.  I really, really want this to be the end of these issues.

In other news, today I learned that 5 families submitted homestudies for the boy.  We are the only ones that haven't been through the adoption portion of the training so they are rushing to figure out how to get us through that so we can be ready to move forward.  I have to be honest.  My heart sunk when I learned this.  When we first learned about this boy I was nervous.  I felt confident that God had told us to move forward but his needs were extensive.  I remember thinking to myself that if they didn't choose us it would be OK.  Since then I have researched more, learned more, and started to imagine life with him as one of us.  I spend my days thinking "What would it be like if he was here?"  I didn't realize how much I had grown to love the idea of having him here until I got that email.  My heart sunk.  I know that we could still be chosen but I feel like I need to prepare myself for the fact that we won't so I won't be too heart broken.  With the training issue and the fact that we have 4 kids, 2 with special needs, it seems logical that they might choose a family who is ready and can give him more focused attention.  If they don't choose us I will have myself a tiny pity party and move on.  Really, I will.  I know this is where God wants us and I know the best family will be chosen for him.  That is truly what I want, and so it's OK, but I'll be sad for awhile before I focus back on foster care.  Just waiting now.....again.

Hospitals, deadlines, and meds....oh, my!

We are currently in the hospital waiting patiently for....well....poop.  Try not to be jealous ;).

Right out of anesthesia.

A thearpy dog came in to see her.

Moved to our new home for the night and hooked up to meds.

She's bored out of her mind.  This would be a dream for a child who loves TV but for one who could care less it is pretty dreaful to sit here and do nothing.  She did watch something about Tinkerbell, played some apps, and now she is listening to music on my phone.  She can only drink clear liquids and eat broth or jello.  She discovered she loved jello....and despises broth.  It's just not the same without chicken and noodles!  I managed to hide in the corner and eat a salad before I passed out from hunger!  I feel bad eating in front of her so I chose something she doesn't like in case I was caught.  We are still waiting on the "results" of the meds they are pumping into her through her NG tube, and from what I understand it is going to be a long night of "results" ;).  They say we will be discharged early tomorrow.

In other, less disgusting news, today is the deadline for homestudies to be turned in for the boy.  I am stalking my email dying for any word of what is happening.  I'll post something as soon as I hear but I'm not getting my hopes up that it will be soon.

I called the doctor today about her meds.  Since weaning off of the Cogentin she is urinating perfectly fine again.  We haven't had enough heat to know if her heat sensitivity is better but I have no doubt it is.  Since we reduced the Risperdal the drooling is well under control but I have a call into the doctor to ask what in the world we are going to do when she needs to increase her Risperdal again. 

Medical issues

We are really struggling with some things medically with Oksana lately. 

To start, I think I have mentioned on this blog before that Oksana does not poop on the potty.  Have I mentioned that?  Well anyway she doesn't.  Don't bother leaving me comments on what we should do because you can trust me that we have done it ALL and then some.  This is entirely psych related and so severe that our GI said she had not seen anything this bad.  So basically she only poops in her pants and if you don't act perfectly content with the fact that she does that, or if you even mention the fact that it might be a good idea for her to go on the potty, she holds it.  And she holds it for a long, long time.  When we told her psychiatrist this she told us we would need to see a GI and start a bowl regimen with her so that she can't control it like that.  I asked her if eventually she would poop on the potty.  Her response was "Do you think she will?"  Well sadly we both knew the answer to that.  She told me that if we didn't do it now we'd be doing it when she was 15.  So today was the GI appointment.  In true Oksana fashion she was well prepared for it since she had been holding it for one week prior to this because I made her put her underwear on by herself after she pooped in them and I wouldn't do it for her.  Yeah, she has some issues.  I was almost to the point of giving her an enema and then I decided it was best for the doctor to get the full effect of what we are dealing with.  Well she got it all right.  Turns out, after an xray, that Oksana is quite literally full of poop.  So much so that she is being admitted to the hosptial on Tuesday.  They are going to sedate her, clean her out manually, do a rectal exam just to be 100% sure there is nothing physcial going on, place an NG tube, and then keep her overnight to continue giving her meds through the tube to clean her out.  Once she is completely empty we will start a bowl regimen using medications to keep her moving her bowls and unable to hold them in.  It's hard to believe it has come to this.  Don't even get me started on how hard it was to look at that xray.  It was physical evidence of what trauma does to a child and it wasn't pretty.

Next on my list is Risperdal.  We have a problem.  The last increase....the one that finally gave us peace....the one that finally had her functioning in school and enjoying life....well it has also caused a significant side effect.  Drooling.  And lest you think that is no big deal let me tell you that this was no ordinary drooling.  I've never seen anything like it.  There was literally a river coming from her mouth.  Her skin was constantly went and despite our best efforts she had a rash climbing up her face that we could not stop.  Well guess what?  Low and behold they have a medication to battle the side effects of the medication.  We started it and within 12 hours her face was dry again.  It was amazing.  Her rash was gone and all was well.  Then we started to get side effects from the medication that takes care of side effects.  She had extreme heat sensitivity (and it's only 80 degrees out) and she was struggling to urinate.  Now she always has that problem, mostly because her colon is so full that it is putting pressure on her bladder but this was worse than ever.  When we looked it up, sure enough it is a side effect of the new med.  Sigh....  That's not even the bad news though.  The bad news is that the doctor on call (her psychiatrist is out until Tuesday) had us wean her off of the new med and asked us to reduce the Risperdal to see if we can still maintain behaviors but reduce drooling.  If this doesn't work (and it won't) we may have to wean off of Risperdal and try a new med all together.  That alone makes me want to crawl into the fetal position.  That was Monday....the drool started back today.  I'm so frustrated.  We talk to her psychiatrist on Tuesday to get instructions from there.

Ahhh but that's not it.  Oksana recently got Botox in her calves.  The last time she had botox they did not sedate her and it was very painful.  This time we took a day off of school, had her sedated, and she got botox.  It was a much more pleasant experience except for the extra time it took and the time off of school.  Well it looks like it isn't working.  I kept thinking maybe it was my imagination but no...her PT did measurements today on her range of motion and we've seen 0 change....0.  Now there are different types of botox and different dosages so we can do it different next time, but goodness this is frustrating.  Considering that the GI appointment was today, the drooling started back today, and we've learned that the botox may have been a complete bust today I'm just DONE! 

The good news is summer vacation is here and we won't need to deal with all of this while school is in session which is a huge relief.  Tomorrow is a new day and we are going to enjoy it!

No new news

We had our final social worker visit on Wednesday but we didn't get any new news.  This new adoption route means that we are out of her hands and being put in the hands of the people on the adoption/permanency end of things.  Because of that she isn't quite sure of how this will all happen, except for some general guidelines like "Well you SHOULD hear from someone before the 28th".  The bummer about that is our social worker is type A like me and I love her!  Now I get to rely on people who have made me their last priority!  Feels a bit like international adoption :).  Anyway she did say that our home study is being reviewed by her supervisor.  She told her to have it back by the 28th and she said if she doesn't she will just turn in her rough draft to be considered for the boy.  She also mentioned that the licensing worker for the foster family said we would be a good fit.  That really means nothing but hey, I'll take it :).

While we count down the days to the 28th we are preparing for end of the school year events.  We just had Anya's IEP and she is going to be in an amazing class next year.  Her team is all the same people as Oksana's except she has a different special ed teacher.  Her special ed teacher gets all of the kids with Down Syndrome and she knows Down Syndrome well.  I think she will be awesome!  Oksana's IEP will be at the beginning of the next school year but we do know that she will have a different special ed teacher and there are lots of discussions happening about what changes would benefit Oksana for next year and what changes are still more than she can handle.  It proves to be yet another interesting year for her.  I wish I had the same enthusiasm that she would have a great year as I have for Anya but I know her too well.  It's going to be hard no matter what they do.

Before I start to focus too much on next year there is still this year to finish.  This last week of school, as many of you know is a very unstructured week with lots of "fun" activities.  Of course your definition of fun and the definition of fun to a child with a past of trauma are often two different things.  While most children went bounding out of their houses for field day today full of excitement, Oksana was showing signs of stress.  Her whole team is aware that these days are hard for her and are on alert to give her all of the breaks she needs and not worry about what she does or doesn't participate in.  Yesterday I got an email from her OT saying that she was disassociating and her pupils were dilated.  A classic stress response, but a different one for her since she usually attacks someone.  I think the Risperdal is keeping that at bay some.  This week last year was an absolute nightmare.  On top of everything she had a para sub and she went absolutely insane.  I was getting daily phone calls about her attacking children and teachers in the halls so I guess you could call this progress.  Maybe.....

I'll just be glad when it's all over.

Birthdays!

Foster care and adoption isn't all we've been doing lately though it certainly feels that way sometimes!  Oksana turned 8 and Anya turned 6 one month apart from each other! 

Oksana absolutely loves birthdays!  Here are a few pictures of her special day:

 

She has talked about the day she would get an 8 balloon since the day she got a 7 balloon!

 

She loves her "squeezy sheet"!



 After Oksana's birthday the girls had a combined party with friends and family at a local bounce house place.

I honestly thought this would be a disaster.  I thought Anya would be totally overstimulated and overall difficult.  Instead she had the time of her life!  This girl loves to bounce and slide!

Oksana's best buddy, Gretchen!

The party girls.  The boys refused to get in the picture ;).

I feel like 90% of the pictures I took are a big blur like this one!  Everyone was in constant motion!

Then we had Anya's birthday.  She has absolutely no idea what a birthday is.  I think she pretty much  just wondered why in the world we were giving her presents and singing before we ate cupcakes!  No candles because at the bounce house she was petrified of the candle :)!

She loves anything that makes noise.

"Well I have no idea why you are giving these to me but OK!"

She loves this Elmo.  She has never even seen the show but he laughs when she tickles him and it cracks her up.  She carried him around like this non stop for the first 24 hours she had him!

CUPCAKES!  Gluten free, of course!

Freak out Mode

This is a continuation of the last 3 posts so if you haven't read those yet it will make much more sense if you do! 

The first details we got on this boy were minimal.  Basic special needs and that's about it.  Enough for us to be willing to learn more.  The next bit of information we got was the profile emailed to me with the picture.  There were some things in there that were concerning to say the least.  Once the initial feelings of falling in love with a picture wore off the reality of what this child faces set in fast and furious.  I call it "freak out mode".  It is that time when you have to come face to face with some harsh realities about why children come into state care.  These kids aren't there becuase they came from great situations.  This child's family has done some things that will impact him for life physically and psychologically.  On top of that he has a handful of special needs that are very different than what we have handled before.  We both needed time to thoroughly research each and every thing that was presented to us so that we could go into this as knowledgeable as possible.  It even turned out that Anya had a doctor's appointment this week so I was able to show it all to our pediatrician and get her take on it.  She pretty much had the same questions we did and warned us about the same things we were already concerned about.  In the end she was a great encouragement to us and had full confidence that if we chose to move forward we could handle it.  I got on the phone with some friends who have children from similar back grounds, and I've lived on the internet searching anything I can on children who live with the things this sweet boy is living with.

Finally, one day I sat on the phone with a friend and we had a great discussion about faith and life.  We got into a discussion about God giving good gifts.  In the discussion we talked about the HARD things God had put us through and how in the past we had seen "good" as equal with "easy".  Now we better understand that good can be very, very hard but it is still truly a good gift from God.  I shared with her that this child could grow to be 18 and Larry and I could look at each other and say "Why did we ever worry?  This child has been such an incredible blessing to us!"  Or we could be looking at each other and facing that fact that we have a child who is walking the same path his biological parents did, and he could cause our family a lot of pain.  Either way, if God chooses this boy for our family, we know that he is a GOOD gift from God.  We can't spend our days on the "what ifs".  We need to be educated and we need to be aware, but we don't need to fear what God has planned for our family.  Some right perspective is always good for snapping me out of freak out mode!

Now we wait for our social worker's next visit on Wednesday.  We are anxious to see if she has any other information for us at all.

Our new journey part 3

After reading the email Larry looked at me and said "What do you think of this?"  I said "If this were a girl we'd be all over it."  His response was "Then why aren't we all over it?"  I reminded him that we don't have room space for a boy.  He told me that Anya could share with a boy still for a few years and at that point we could re-evaluate, but he felt that we needed to inquire more about this boy.  I got my answer.

We both decided that since this was the first time we were adopting a boy we needed to talk to our boys about it and get their thoughts and feelings.  Both boys were very open to it and said they did not care at all what gender the child was.  That was another open door.

That night I did not sleep at all.  Our social worker was coming the next morning and I could not wait to tell her but I was also struggling with what in the world we were going to do about the girl with CP.  How would God work it all out?  What if they chose us for the boy and we still had the girl.  What if we were supposed to take the girl and not the boy.  What if, what if, what if....you get the point :).  Finally I told God that I had complete trust in our social worker and I asked Him to give her the wisdom to make the right path for us clear. 

The next morning our social worker came in and asked how we were doing.  I said "We want to consider the boy."  She got a big smile on her face.  I asked if she was surprised and she said yes she was and she almost didn't send us that email last night.  She remembered, however, that we had said we would at least pray about it so she went ahead and sent it to us.  My next question was "What about the girl?"  Her response was "They found another family to take her.  I just got an email the other day asking for more information about you becuase they were deciding which family would be the best placement."  I said "So what do we do now?"  She replied, "I will email her social worker today and tell him to give her to the other family.  I just don't have time to have you licensed before she is discharged."  Another clear answer.

After she left that day I ran to the grocery store with Anya.  I checked my email at one point and saw another email from our social worker.  The boy's case manager had put togther a more complete profile on him with a picture and sent it out to all of the agencies in the area asking them to look for a family.  I quickly opened the picture and almost died from the cuteness!  I read the rest of the medical info and I'll just say it is not easy stuff.  I sent it to Larry and asked him if there was anything on it that made him think we might need to reconsider.  We both agreed that despite the report we could not deny that God had been throwing doors open for some reason.  We have no idea if it is to make him ours or not.  All we know is this is right where God wants us.

The report indicated that they were giving until May 28 for all interested families to submit their homestudies.  At this point we have no idea how many families will come forward.  We have no idea if he will be ours.  We have no idea what to expect at all, but we are walking forward in obedience anyway.  If he is not meant to be ours then we will just jump back on the foster care route that we started on.  Still, we can't help but wonder if this might be the reason God put us on this journey in the first place.

The next day our homestudy was ready and being sent off to be reviewed by our social worker's supervisor.  Once it is reviewed it will be turned in to be considered for this sweet boy.  Our social worker comes for her last visit next week but for now we are just waiting for any more news.  We will have to take some more training classes at some point, and we are anxiously awaiting May 28th to see how many homestudies were submitted.

That catches you up to date, so it will end the "Our new journey" posts, but my next post is going to be a bit more about the emotion of all of this.  This boy has some complex medical needs and quite a few unknowns.  I won't be sharing any details of that here since this is a public blog, but I will share how we are processing it all.

Our new journey part 2

The next week our social worker came out again.  At that point they had us fast tracked so our visits were basically back to back.  On our second visit I was so excited I could hardly contain myself.  I was DYING to hear if she had any more info on the pre adoptive placement.  When she arrived she informed us that she did not have more info but wondered if we would be willing to take a girl that has CP and needs a placement after she is discharged from the hospital.  It turned out that the child with CP was at the same hospital where my girls get therapy and I was going to be there that afternoon.  She even suggested seeing if we could meet her.  Our heads were spinning.  We had thought we would not have a placement for about a year and we had just been presented with 2 children and one was a permanent placement!  We asked about taking the girl with CP and how that might affect the pre adoptive placement.  She told me she would get more info on both of them to help us decide what to do.  She even asked if we would be willing to take both.  We told her we would need extensive info on their needs to consider that.

She left our house and called us back 10 minutes later with info on both placements.  The pre adoptive placement was a boy.  I reminded her that we really don't have permanent room for a boy, so we would likely not pursue him, but we would be willing to pray about it.  She also told us more about the girl and I told her it seemed likely that was the route to go.

That afternoon as I was pulling up at the hospital my phone rang and it was the girl's social worker.  I told him I was at the hospital and he said he'd be there in 5 minutes to meet me.  WHAT?!  I was a nervous wreck but I sent my girls off to therapy and next thing I knew I was sitting by the bed of a beautiful sleeping little girl.  Her nurse gave me more info about her and there seemed to be a lot of confusion about when she would be discharged, plus the pesky little fact that we were not even licensed yet!  No one knew if we could even be licensed fast enough to get her.

The social worker at the hospital came to meet me and she started talking to me about coming to get training on her g tube feeds and asking for my pediatrician's name.  I told her we were not licensed yet, which had not been communicated to her, but everyone was moving forward like this was going to happen.  They decided to keep her over the weekend so I waited for a call on Monday with some news and heard nothing.  Our social worker was coming Tuesday morning so I figured that we'd know more then but in the meantime I was mentally preparing myself for being ready to take this girl. 

Monday night I was at Bible study when I got an email from our social worker.  She was forwarding me information about the little boy who was a pre adoptive placement.  I read it and my first thought was "If this was a girl we'd be all over it."  I sat for a moment and prayed over the situation.  I finally told God that I would go home and show it to Larry.  If his response was "We aren't taking boys we don't have room space", I'd drop it and move on.  If he was interested or came up with a suggestion for our room situation I would take that as God telling me we should consider him.

When I got home I handed him my phone and asked him to read the email.  It felt like and eternity while I waited for his response.

To be continued.......

Our new journey part 1

It has been a long time since I have blogged and it's not for lack of things to blog about, that's for sure!  Let me share a bit with you about the new journey we are on.  Back in early March we decided that we were interested in adopting again.  I called a friend who is a social worker and told her that we wanted to do a domestic adoption.  She informed us that there is a big need in our area right now for foster parents for medically fragile children.  I told her absolutely not.  We were not at all interested in that.  One of our many reasons was that we did not have the childcare or time to do the 30 hours of training required that we had already done in Arkansas.We did some research and decided that we would do a private domestic adoption of a child with Down Syndrome.  We called our social worker to tell her that we wanted her to update our home study and she said they have a policy that you can not update until your child has been home a year.  We were not thrilled.  We prayed and ended up deciding to ask that they make an exception for us.  Whatever their answer, we would be content that it was what God wanted for us.  After talking to her supervisor, our social worker said we could start again in 9 months, which would be July.  So we setteled in for a wait.

In the meantime, foster care came up over and over and over again.  Everywhere I looked, and every conversation I had seemed to point to foster care.  It eventually got so crazy that I said "FINE GOD!  I will talk to Larry about it!"  Larry was not 100% on board but was certainly willing to pray about it.  A bit later he told me to go ahead and just call and get info.  We both knew that with the speed the state works at we likely wouldn't have a placement for a year or so.  Our plan was to foster, knowing that at some point a child would become available in our care and we would be open to adopting at that point. 

I called the agency we are working with and on March 26th they returned our call.  As we talked she told me she was pretty sure that the training in AR and in MO are the same.  If that was the case we wouldn't need to go to training.  She was right, and we were in shock and overjoyed.  We saw this as an open door to move forward.  So we skipped a pretty large part of the process and went right into the next step.  We were assigned a licensing worker.  She talked to us briefly, sent us some paperwork, and set up a time to meet.

One month later, on April 25th we met our licensing worker for the first time.  By the time she came to our home we had already taken CPR training and done 90% of the massive packet of paperwork she sent us.  By the end of that visit our checklist for becoming licensed was almost complete but she still needed to do 3 more visits with us and there were lots of loose ends to tie up.

At that first visit she told us that there was a child who needed a pre adoptive placement and they were interested in telling us more about this child.  We were shocked.  A pre adoptive placement?  Despite our surprise we were willing to learn more.  The first thing we wanted to know was is this child a boy or a girl.  The only room space we have now is to share with Anya.  That's fine for a boy temporarily but knowing this was going to be a permanent placement we likely would not be able to take a boy. 

To be continued.................