So what did we learn at Shriner's?

Last week, we had our first official consult with anyone who really might be able to answer questions for us regarding Zeke's hands.  Children's Hospital in Omaha, for all of their talents, was way out of their realm in terms of orthopedics so we had a short 5-10 minute visit with the pediatric orthopedist there and instead accepted a referral to Shriner's in Minneapolis.

We met with the hand specialist.  Highlights from our first visit include:

1.  Zeke's unique head shape being assessed not as an indicator of lying flat for too long or genetics but as craniostenosis, which occurs when the joints in the skull fuse prematurely.  We will be having a CT scan at some point to see exactly what is going on there and if this is something to be concerned about or not.

2.  The doctor was unsure as to the actual cause of the differences in Zeke's hand.  His right hand, the doctor described as a terminal amputation.  The doctor indicated that that arm was indeed shorter (which I have thought but wasn't certain) and that the portion of the hand that is there is smaller than the other hand.  He did not think it was amniotic banding because there is not a presence of tapering on the bones in his left hand.

3.  The doctor wanted us to look at the possibility of doing a toe to finger transfer for Zeke's left hand.  The surgery would involve removing his second toe and using it to length his pointer finger as well as to create a third finger on that hand.  This would give him a tripod type grip which the doctor felt would increase the functionality of that hand as the type of tasks required of Zeke increase in complexity as he gets older.  We really don't have strong feelings one way or another and are hoping we can find some other families who have done a similar surgery (or contemplated it) to share their experiences.

4.  The doctor recommended exploring a prosthetic for Zeke's right hand.  What this might look like, we really have idea.  From a complete hand to an assistive device that would aide in performing specific tasks, until we meet with the limb deficiency doctor and the prosthetic department, we won't have a good idea of the options.  Most of what I have heard is that people who have congenital differences of their upper limbs usually prefer to not use prosthetics and would rather use the body they have been given.  However, after posing some questions to other families who have children with limb differences, I did gets some good perspective on this.  Most agreed that this was true of their child.  Things that were brought up that I had not though of were that at a younger age, a child might be more receptive to learning to use the prosthetic.  The young age makes the therapy seem more like play and the kids are less set in their ways regarding trying something new.  Using the prosthetic is an experience that is helpful for the child, even if in the end they decide not to use it.  At some point in life, the child may decide to go back and use a prosthetic and having the initial experience of working with the prosthetic might be helpful in that situation.  Lastly, if your child breaks their "good" arm, if there is a prosthetic available, even if it isn't a first choice, it beats being completely limbless.  One mom also suggested that occupational therapy at school could be set up to do a ay with prosthetics and a day without, with each day presenting the same task just learning to do it two different ways.

5.  We will be revisiting Shriner's in the late fall/early winter to meet again with the hand specialist to discuss more about a potential surgery and to meet with a limb deficiency doctor and the prosthetic team.  In general, there wasn't huge rush to get started on making a final decision regarding surgery or prosthetics.  In terms of what we are doing here at home, we decided to wait until Zeke turns 3 to get our local school district involved.  At 3, the district itself can write an IEP for Zeke (related to occupational therapy) versus having to have an outside provider work on the IEP.  We don't exactly know how the services will shape up in terms of OT but there are several options regarding preschool and having services provided on the preschool campus.

Minnesota Trip

Last week, we packed up the van and headed to Minnesota for a short vacation and a doctor's appointment at Shriner's for Zeke.  I'm counting the drive there and back as a success since I didn't have the urge to kick anyone out of the car.  The kids did great on the way there and while the way back was a little rougher, it was still manageable.

In an odd twist of fate, we had a hotel of sorts for a couple of nights thanks to the hospitality of friends.  (Bed/breakfast/zoo is actually what my friend dubbed it.)  When I was in high school, I used to double date with a friend and her boyfriend (now husband).  After high school, my boyfriend at the time and I broke up and since this friend was several hours away from me, we drifted apart.   We reconnected a few years ago on Facebook but in an odd twist of fate, at the same time we started looking to adopt from China, she showed up in an online forum for the agency Zeke was listed with.  Long story short, she and her husband traveled to China a few months before we picked up Zeke to pick up their daughter who is just a few months younger than Zeke.  Their daughter has amniotic banding which affects an ankle and both hands.  This family now lives in a suburb of the Twin Cities and is doctoring through Shriner's, specifically with one of the same doctors we see.  So we crashed with them for two nights.  Our kids had a great time being wild and crazy.  Kenson got an introduction to big game hunting via the Wii.  Conleigh latched onto their oldest boy and thought he was the greatest.  The big kids all got to camp out in a sleep over style party both nights, staying up way too late.  And the grown ups got to visit and talk about life and limb difference stuff.

The kids

After staying with our friends and taking care of Zeke's doctor appointments, we headed towards the Mall of America.  We took in the aquarium, the Lego store, and the Water Park of America which was at the hotel we stayed in.  Conleigh and I went down a large water slide which may have been a mistake for this pregnant lady.  Kenson tackled one of the big slides on his own.  And both of the big kids tried their hand at body boarding in the surf pool.  (Way too hard for them but they both wanted to try.)  Zeke was not impressed with the amount of dripping and splashing and was annoyed at the water in his eyes.  We ended up ordering Jimmy John's at the hotel and Conleigh thought that was delightful.  When the delivery arrived, her first words were "Did they say Jimmy Johns?"  (Like they do on the tv commercials.)  Followed by "What about freaky fast?  Did they say freaky fast?"  Can you tell we do not live in a town where there is a Jimmy Johns and that we have never had them deliver food to us before?

We also spent an hour or so at Cabelas.  I know, a real vacation hotspot.  But seriously, you can't beat a nearly free experience that involves large displays of taxidermy, a freshwater aquarium, free fudge samples, and camping displays.  We did buy some vension, elk, and buffalo jerky so it wasn't entirely free.  Trying to explain the taxidermy was interesting.  When we finally got to the African displays, Kenson wanted to know how they managed to find enough feathers to stuff into an elephant.  (Um, maybe the word "stuffed" was not the best description.)

Fun little trip without any major stress other than our GPS getting us lost on our initial foray into Minneapolis during rush hour.  But we eventually got where we needed to go.

Changes

Are you read for this?  (Not sure I am even though it's already done...)  Kenson has been saying for several months that he wants to cut his hair.  He really wants it shaved, specifically with some type of design shaved into it.  I told him he had to wait until summer when we could get into the barber shop and that if it was too expensive to get a design that that he would have to use his own money for part of the hair cut.  This weekend, we took the plunge and started the first part of the hair cut.  The locs are gone.  He has about 1 1/2 inches of hair left but at some point, we'll head to the barber shop to finish cutting it really short.  (Now the part where I tell myself "It's just hair.  It's just hair."  I really like him with a bit longer hair but as long as it's not a battle to take care of it and he is willing to do his part to help take care of it, then he will be able to have the freedom to do what he wants with it.

So here's the before and after.

A Boy and His Worm

Nothing says happiness like a boy and a worm.

"Worm in cup"

"Worm in rocks"

"Worm in wah der"

"Worm in truck"

"Worm broke"

"Worm hiding"

If you are a worm who happens to be listening, hide first, not last.

Mother's Day Recap

-Spent 6 uninterrupted hours with my husband shopping; may or may not have talked a lot therefore meeting my husband's word quota for the next 6 months
-Purchased a truckload full of shrubs and perennials for the beds which we plan to plant next weekend
-Perhaps scared off a new babysitter as she looked a little shell shocked when she left our house

Anger and Sorrow

This week, I read this at One Thankful Mom:

Anger feels so much better than sadness – anger is powerful, sorrow is terrifying. 

Anger feels like control. If deep grief, fear, and sorrow come the surface, those feelings may never stop and that is terrifying.

Their family is currently walking a really hard road with an adoptive daughter who is struggling which is why Lisa felt like she should share a bit on the connection between anger and sorrow.  I just found it very profound, not just for adopted kids.  For someone is grieving the loss of a parent or a child.  For the mom, trying to help a child who seems angry often  or who who is quick to anger.  For someone who feels betrayed by a spouse or a friend.  

For one of mine, there is a lot of anger that often bubbles out over small things.  This same child is also the one who vocalizes most often about his/her birth family and has cried the most for them.  For this child, I think there is a lot of grief and sadness over the loss of his/her first mom and the chance that he/she had to be with that mom.  And while there are tears of true sadness and grief, I think there are also a lot of outbursts, overreactions, and frustrated moments that come not because of the situation at hand but because of a thinly dug graveyard of not quite matured emotions.  

Anger makes you feel strong and in control.  Anger makes you feel powerful not powerless.  Anger is just much easier than feeling deep hurt.  Truth for us all, followed by God's truth as to who He created us to be.

"For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline."  1 Timothy 1:7

6 months home and adoption academics

Lately, Zeke has been all over the "academics" of being 2 1/2.  He's very good with body parts; I think he can probably name all of them.  He loves to try to count things.  However, his number sense is limited to saying "tree, four, tree, four, tree, four."  You would not believe how many sets of things are apparently "four."  He has also been practicing his color words.  For quite awhile, everything was "red."  And if you told him he was wrong, he would tell you "no, red" and insist that he was correct.  Occasionally, he would get a color right and I wasn't sure if it was just a case of a blind squirrel finding the occasional acorn or if he actually did know and thought that teasing us by calling everything "red" was just a fun game.  In the last few days though, he has been much more accurate, especially if you ask him to point to a certain color.  (Although he does often vocalize the right color too.)

It's such an interesting contrast because my other two were no where close to being ready to talk colors and numbers at 6 months home.  It has nothing to do with intelligence but is all about readiness and child development, something that can be really hard to sort out when you are doing an international adoption.  It's very easy to compare your child to other kids their age and feel like they are behind.  But the reality is, for most kids, they just need time.  What you are looking for is progress, consistent progress even if it is slow.  Our culture often does not value this as we hurry kids to grow up; we bypass play and childhood in favor of preschoolers and kindergarteners who can read and solve addition problems.  (When most of us did not learn to do those things until first grade or beyond and somehow we all turned out alright.)  For me, with my first two, it was a struggle to not compare, to remind myself that they are making up ground in their own unique yet appropriate ways.  

Quotable

"Sometimes I feel more guilty for what I’m not than thankful for what I am."

(Read the rest of Lysa Terkeurst's short devotion here.  It's a great reminder that we are all uniquely created by God, to not be envious of the gifts others have or to ignore or neglect the gifts we have.)  

The Rabbit Trail of Motherhood

Awhile back a friend and I were having an email conversation on motherhood.  She is similar to me in some ways in that she had a job she loved before having kids.  But she chose to let go of that job in order to stay home with her boys.  She is glad she made that choice and would not take it back but sometimes finds herself wandering down the rabbit trail of motherhood, wondering just how far away she will get from the person she used to be and the passions she still has but are unfulfilled due to the demands of being a mom.

I know those feelings well.  With motherhood comes an intense shift in our identities.  Sometimes it's an amazing God filled shift where we come to find purpose in our lives in a a way we have never found purpose before.  But when you are someone who has had a strong sense of purpose previously, that shift feels almost like walking away from your original purpose in order to exchange it for the daily tasks of motherhood.  For some people, they are able to meld those things together into something that fulfills many of the longings of their hearts.  And for others, those things seem incongruous.  In my case, I long to be more involved in Haiti, to be invested in a way that seems meaningful and connected rather than my current state which feels more like an observer.  I would love to teach summer school at Conleigh's orphanage, I would love to be involved with a group that trains nannies, I would just love to be in the thick of something that seems worthwhile there.  But as a pregnant mom to 3 soon to be 4 kids under the age of 7, it just doesn't seem practical.  And there are definitely times where my heart yearns to be back at school, teaching, being creative, being mentally stimulated by the challenges, being a part of kids' lives.

I often remind myself that motherhood is a season, and I do think that is true.  Then, I was reminded of something during a recent Beth Moore Bible study.  Beth spoke about how she initially felt called to ministry when she was 18.  However, she did not see that all develop until she was in her mid 30's.  She did all sorts of stuff while she was waiting from teaching poise classes to aerobics.  I think her words reminded me that we are often anxious to see God seamlessly put together the pieces of our life in such a way that we just zip right from point a to point b.  We assume that we are at point a and we have all the wisdom and experience we need to be what God needs us to be so we do not need to wander.  We forget that those moments that seem to be directing us away from our original purpose might actually be moments that will serve to make us better as we live out that purpose later on.

So for my friend, your conversation was not lost on me.   I will choose to believe that this season is preparing me for another season, in ways I have not yet even imagined.