A large family, homeschooling, adoption, special needs, whatever strikes my fancy, sort of blog.

A large family, homeschooling, adoption, special needs, whatever strikes my fancy, sort of blog.

Monday, July 15, 2013

Luke's Urology Appointment and so much more

When we decided to adopt 2 kids this trip, we filled out a Two At Once questionnaire from our agency.  As I mentioned, the homestudy approval for two was almost an afterthought.

And that was the extent of our preparation for an event that has pretty much knocked me on my butt.

I mentioned in China that adopting two non-ambulatory children at once was not a very well thought out plan.  It continues to be a challenge.  Now that Paul has gone back to work, it's becoming very apparent that we did not think this through.  Annaliese is out of town, looking for work.  Josiah sleeps in (he's a night owl).  Samuel is getting dropped off at football at 7:30 every morning.  Brianna is gone to camp.  Hannah still takes a lot of tumbles just walking herself around.  I'm down to Eli (11) or Jack (9) to help me haul in one of the toddlers when I get back from that morning football run.  Being that I can barely lift Luke myself when I'm not feeling well, I have serious reservations about letting Jack Jack haul him around over concrete.  However, Josiah often keeps Eli awake late at night, and he's fighting a cold, so I told him to stay home this morning.  Fortunately, he's a sweet boy, and he heard the van get home and came out to carry Katie (the light one!) inside for me.

Yes, I understand that this is likely temporary.  I am anticipating Katie being able to walk in a few months.  Which will help a lot.  Unless she becomes a runner.  Which is not uncommon for toddlers, really.  But what if Katie's situation was worse than we expected?  What if she had hip issues that left her in a wheelchair?  What if Luke never walks?  These are questions we should have been asking ourselves months ago.

Although I'd looked at a few files previously, we (okay I) began our search for a boy in earnest after Christmas.  Being the not-so-patient one that I am (I was checking out library books about secondary infertility less than 2 months after we started "trying" for Annaliese.  Um, yeah, NOT a problem!) I was frustrated about things "taking so long."  See, most adoptive families want GIRLS.  Over and over, you hear that there are plenty of little boys on the shared list, waiting just because they're boys.  Well, that's partially true.  But it depends on what you're looking for, and what's available at that time.  It's not like filling a grocery order.

While we were open to a son with limb difference, I kind of hoped for a less visible SN this time.  Our family has been a sort of Traveling Freak Show ever since about kid 5 was born, and I didn't want to add one more thing to make people stare at us.  I also didn't want to leave people with the impression that all kids coming out of China were "deformed."  So we marked some other special needs on our checklist.  One of those was hypospadias.  Which is a little boy genital malformation that can usually be corrected with a fairly simple surgery.  Not something that would be visible to people around us.

We looked at a couple files and realized that, due to translation issues, hypospadias can be a catch phrase for a variety of genital issues, some of which were accompanied by rather shocking photos.  Because of this, when we submit LOI (letter of intent) for Luke, we did not share his special needs.  We wanted to 1) make sure what we were dealing with, and 2) give the boy some privacy.  What 13 year old wants to know that their parents talked about their junk on the internet when they were a toddler??

Well, now we're home, and now we know.

Luke's listed special need was:  undescended testicle, delays

Undescended testicles are not uncommon in newborns.  Many self correct without intervention.  Some require surgery.  And others are simply absent altogether.  We felt like we could deal with this "special need."

The delays part of the equation was a bigger leap of faith.  We knew he wasn't walking at age 18 months.  But I justified (oh, how I justified!) that with things like, "Maybe he is in a crib or baby seat all the time and doesn't get to play on the floor to learn to walk."  Besides, one of our bio kids didn't walk until 15 months, and there's nothing wrong with him.  It wasn't until our April update that I noticed that there weren't any pictures of him sitting up by himself.  He was either in a chair or there was a hand in the picture, holding him up.  Hmm.  Still, I thought we were looking at orphanage delays.

Many times you read stories of people who adopt a child labeled "developmentally delayed" and the story always has the happily-ever-after ending of, "but they're totally fine!"  Or, "She just needed glasses!"

The day I met Luke, I realized that was not going to be the case with him.  The "All he needs is love, and he'll catch up!" thoughts went right out the window.  Every mom instinct within me shrieked, "SOMETHING IS WRONG with this child."  And it still does.

Last Tuesday was Luke's urology appointment.  So, yeah, I'm almost a week behind in getting my thoughts written.  Life is kind of overwhelming right now.

We got there and the nurse took us back and got a (brief!) health history.  I told her he had giardia.  Luke was examined by a resident and a student, neither of which wore gloves, even though they asked how we found out he had giardia.  I explained that I asked for him to be tested, even though he was asymptomatic, because often internationally adopted kids come home with a variety of issues, and that's one of them.

The two of them found one testicle and poked around a bit, but couldn't find the other one.  They started talking up laproscopy (poking a camera through Luke's belly button to find the other testicle) and surgery.  I explained to them, "Luke is *very* delayed, and we're not sure what we're dealing with here yet.  He's scheduled for testing at the MIND Institute.  I hesitate to put a child through surgery solely to preserve his fertility if he may not be capable of living independently as an adult."  They seemed understanding and went to go get The Doctor.

The Doctor, who came not in white coat, but blue dressy dress, came in.  Once again, she started poking about in his nether regions without benefit of gloves.  She found the other testicle just about immediately.

I was almost angry.

At least one medical professional of some sort in China
The GP we saw our first week home
and these two almost doctors
could. not. find. the testicle that it took her under a minute to locate.

She squeezed them into view and pointed them both out.  The student was offered the chance to poke around again, and did so, until she, too, was able to find it.  (Again, no gloves.)

The Doctor explained that the testicle was not undescended, but retractile, and would come down on it's own by the time Luke was about 7 or so.  I had read the hand out, so I got it.

She then asked if I had any questions.  "I'm curious why none of you wore gloves after being told Luke has active giardia?"  The instant the word giardia was out of my mouth her eyebrows shot up and she said, "He does?" as she flew to the sink and started scrubbing to the elbows.  The student and the resident had the grace to look sheepish, then they, too, started to wash.  I guess they forgot to mention that part when they filled her in on his condition and health history.

I was thinking, "Here I am, with hands cracked and bleeding from being washed so much, paranoid about the kids sharing bath toys, and these guys don't even bother with gloves??"  I felt a little better when The Doctor had such a reaction.  Giardia is nothing to mess with.  In fact, untreated giardia can cause, yes, you guessed it, developmental delays.

And it probably says something uncomplimentary about my parenting skills in general that I am inordinately proud of the fact that I haven't forgotten a single dose of Luke's meds so far.

What this all boils down to is:  The SN we thought we were getting (one simple surgery) turns out to not be an issue at all.  The "delays" however, will take a bit more untangling.  And unless I am very wrong, we will be dealing with them for a long time.

Luke's "shy" testicle was what put him into the Special Needs line.  If the person who had examined him as a baby had been able to locate that testicle, he would have been referred through the healthy baby (NSN) program.  He would have been placed in his family a year or so earlier.  His parents, whoever they might have been, could have offered him the attention and enrichment that an orphanage cannot.  His environmental toxins would have been different.  His giardia would have been treated that much sooner.  Any remaining delays could have been addressed months ago, with therapies already started.  I grieve for what could have been for him.

Now you may be thinking, "You should have known better.  His file said he was delayed.  You're supposed to expect the worst case scenario."  And you're right.  Don't think you're thinking anything that hasn't already occurred to me.  Trust me, I've beaten myself up and second guessed so many steps along the way.  The fact remains, this is a huge shock to us.

It's easy to focus on how cute he is, now, while he's still young enough that a 2 year old that acts like a 9 month old is not much of a disparity to the casual observer.  What happens when he's 6, and his tongue still sticks out half the day?  When he's 9 and he still taps things with the back of his fingertips and rocks?  I need to stop; I feel like I'm suffocating.

None of the "I should have known better" helps me when I'm changing him and he can't even put his own arm through the sleeve.  A tear runs down my cheek and I think, "I didn't sign up for this."  The ironic thing is, I am seeing now that I had a little pride thing going before.  I was a special needs mom by choice.  Only there are special needs and then there are special needs.  Hannah and Katie's issues are a cake walk compared to Luke's issues.  

Last night was a hard night, and maybe I'm feeling a little more raw than usual because I'm tired, so my emotions are nearer the surface than they usually are.  Or maybe now that we're finding our groove, reality is smacking me in the face as I'm looking down the road a bit instead of just focusing on doing the very next thing I have to to get through the day.  Regardless of the reason, it's a scary place to be, and it feels very lonely here.  I hesitate to hit post because I'm afraid of the "You signed up for this" type responses.  

When we were in GZ, and we met other adoptive families, we often had the scenario where someone would ask if Katie and Luke were our only children.  Paul and I would kind of chuckle and give each other a knowing look before admitting that they are #9 and #10 for our family.  One person responded, "You should have your own reality show!"  I teased, "The world is not ready for my reality."  Turns out, I'm not ready for it, either.  

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  1. Just so you have at least one non-"you signed up for this" comment, I'll say that I really appreciate your honesty in sharing this. This all sounds so hard! Keeping your family in our prayers!

  2. Me, too - what Kelly said. And it WILL get better! When does Brianna get home from camp!? ;-)
    I will be praying for your family and I appreciate your honesty and getting to share your journey a little bit.

  3. No one can really know the extent of special needs until you live with it. Remember it is still early and not all the information is in yet. Also remember early intervention is key in all of special needs and he is very young.

  4. Don't beat yourself up. It's hard, really, really hard when you discover the extent of your child's special needs. The health reports from China are so inadequate. You're going to go thru the process of grieving every time you get another dx. It's really going to bring you down but it will get better. Both mine were supposed to be NSN. After we got home my son was dx'd with cerebral palsy which with therapy has greatly improved. My daughter has global developmental delays. After being home 11 years she's obviously not going to grow out of it and all the therapies have only brought about a small amount of improvement. It's a walk of faith, that's what it is. Hard stuff to deal with but God won't ever let you down.

  5. My brother had cerebral palsy and was very limited in his abilities. He eventually needed a feeding tube and a rod in his spine. After about the age of 8, he couldn't speak.

    My mom and I "didn't sign up for this" as his family, but he didn't sign up for it, either.

    Raising this type of special needs child is very hard. The difference for us is that we had time, slowly, from the time he was born, to adjust to his limited ability.

    You've just been dropped right down in the middle of it, which I imagine must be terribly overwhelming. My thoughts and prayers are with you, your family, and Luke.

    Keep in mind that you never know what medical care, a loving family, therapy, and time can do. Don't worry about the severity yet until you know more.

  6. You are surprised. But God isn't. He knew exactly who Luke was when you first saw his file and when you sent LOI. And He knew exactly who you were, as well. He orchestrated this whole turn of events, and He will continue to. He's got this. He's got you. (((hugs)))

  7. I appreciate your honesty. We signed up for 2, too and Ellie isn't just delayed either. I know you have read some of my blog and know what I am talking about. She is 3 and physically can only do what a 9 month old can do. But she is smart and a fighter. We go to our children's neurology next week. I am hoping for answers. On the flip side our Isaiah who we thought had his heart all fixed we just found out is in serious heart failure and needs surgery very soon that is life threatening. I told my husband last night, that while all along I "thought" Ellie was going to be the biggest challenge for me, it isn't seeming that way anymore. Today, my little boy's life is at risk and he is using oxygen and I am scared...You will be able to do this.. You are just in the processing stage and I know you will come through and have peace about whatever God has brought to you.

  8. First, let me say, I'm sorry. It is hard. So much harder than we can expect. I can tell you stories of my own children, but I won't because I can't promise that he'll get better, cured or recover. But I do want to say, you are not alone, even though you feel very isolated. Keep blogging, keep being persistent and take care of yourself.

  9. Kudos for your honesty. This post should be required reading for all adoptive parents but especially those you who are adopting two at once. Please consider sharing on RQ- there are many who need to hear your wisdom

  10. I applaud your courage for being real and am praying for you. God is not surprised by this even though it was a surprise to you. He always has a plan - though I will be first to admit it often isn't the one we would have designed for ourselves. Cyber hugs. Hang in there.

  11. Keep hanging in there. I know it's tough but you are doing a great job. I'll be thinking of you.

  12. Here's the thing, babe...you didn't "sign up for this". None of us do! Life is NEVER what you signed up for, k? Doesn't matter what you THOUGHT you were getting...it's never going to be that.
    And being that you are a real person, you are going to struggle with that sometimes. And as your friend, I'd rather you share your struggles, and let us come alongside you and carry you, either physically, or in prayer, because that's what friends do, k?
    And remember...all those people who say that God never gives us more than we can handle (I HATE when they say that) are wrong. He often does. But it's never more than HE can handle, and if we ask Him, He'll pick us up and do it. K?
    Hugs, babe. Wish I could hug you IRL.

  13. I've truly enjoyed your posts and reading your story! Thank you for your honesty! I can't wait to see what life has in store for you.

  14. Great reality post! Thanks for sharing to the adoptive world out there.

  15. I adopted my son whose SN was deafness. I had already adopted another deaf child so was ready for this SN. I met my son and knew right away he had other issues. After getting him home and evaluated it turns out that he had untreated hydrocephalus (water on the brain) it was to late to put in a shunt in his case as it (the fluid leval on his brain) was stable and the damage to his brain had already happened. He has a lower IQ (not horribaly low about 68) but has some serious behavior issues (he had also been abused in his orphanage). I adopted him when he was 5 and is now 14. I do understand what you are going through.

    You are like any other parent who gives birth to a child with a SN, you have to go through all the stages of grief before you eventually get to a place of acceptance. Then you will cycle through those grief stages again as he ages and you are hit with other developmental stages he misses. Eventually though you do get to a place where it is just your normal. You will no longer go through the what if's and he will just be your son.

    Its very hard at first and even more hard when you are suffering with lack of sleep (for the first 3 months home my son woke up at 3:30 AM and was up for the day)So I understand the toll this take on you.

    What helped me was over time to network with other parents who had kids with issues similer to my sons. No one else will really "get it", and it means a lot to have other parents you can talk to who are facing similar challenges. You will find a new community, one you may not have chose to be a part of, but one that you are now a member of. you and your family will grow and stretch in ways you never thought you could. Its not all bad, although there are days you will feel as you already do that its all to much. It becomes your new normal, and you get there by just taking it a step at a time.

    You have a big heart and so much experience with kids. This will serve you well, it will change your older kids and make them even more compasionate and understanding of kids with differences. It will all work out, contact the agencies in your area that work with kids with developmental delays and get connected with their services. A year from now you and your new son and the rest of your family will be in a better and different place then you are now.

    Sending you lots of hugs.