Archives for January 2017

My Little Health Nut

I have finally found my crunchy buddy.  She is sweet. And adorable.  And little.  And she is a huge health nut!

IMG_1624

This is the kind of picture Mommy takes when you refuse to smile for me. One day you’ll figure it out. ;)

Kyrie is starting to eat solids pretty regularly now (yes just starting).  Before she would nibble a little here and there but she wasn’t consuming much of anything.  She ate more for curiosity than for hunger and more for fun than necessity.  My babies nurse a lot.  For a long time… for those of you who haven’t figured that out already 😉

In any case, she was very grumpy after missing lunch today until I found her some food.  Yay for new milestones! And now that she is eating at pretty much every meal, I am quite pleased with the choices she has begun making at the table.  And also a little shocked.  She loves cucumbers, apples, bananas, green beans, blueberries, broccoli, celery and just about any kind of meat.  She is also a huge fan of cheese and split pea soup.  This month has been a wee bit stressful, so I haven’t been encouraging her good habits at all… I have been more of an appeasing parent.  If the baby’s crying, offer a cookie.  Desperate times call for desperate measures, right?

Well, apparently not, because usually she will refuse the cookie.  Or she will accept it and just hold it for a while until something better comes along – a nice juicy carrot for example.  She isn’t much interested in bread or cereal, with the one exception of rice krispies, but the cocoa puffs were totally a no go…  And she will steal vegetables from any adult who is eating anything resembling a salad.

I’m a little confused, because despite my attempts at endearing my children toward healthy choices at this age, I have mostly failed in doing that until they were a bit older.  And yet here comes along Kyrie, for whom I had not tried at all, and she has just decided for herself that she would rather eat the veggies than most anything else.  Perhaps I have finally found a little health nut to join me on my crusade!

If nothing else she is motivation for me.  I want her to keep loving those foods, and it helps me stay on track with eating well knowing that if she sees me with those things, she’ll continue wanting them too.  Today is Day 6 for me of another Whole30 round.  I did the Whole30 three years ago and had great results.  And even though I have an autoimmune condition now and the dietary recommendations for autoimmunity are generally much stricter than a basic Whole30, I knew I needed to start somewhere.  And this month I certainly didn’t have the time to do anything stricter than this.

I’ve been a little surprised at how much it’s helping anyway, even though I haven’t taken out the typical autoimmune culprits (like nightshades, nuts or citrus) or my own food sensitivities like bananas, eggs and avocado.  I already can see the inflammation going down, my face is less puffy and my clothes are fitting better.  I have not had a migraine since I started, which is an awesome improvement, because I wasn’t going more than a day or two without one for the last few months.  I think that’s in part due to my increase in appetite, since my migraines were caused by not eating often enough.  But I have a much healthier appetite now, which is hugely helpful.

I have only had a couple headaches and dips in mood, but they didn’t last very long and were quite manageable.  So overall I’m feeling very optimistic and hopeful.  And I’m just praying that my lab work coming up confirms what I’m feeling! Tomorrow we start therapy again, woohoo!  And I will have some exciting (well exciting to me anyway haha) updates on both of the kiddos to share.

Iced In (Theoretically)

IMG_1572

IMG_1597

 

 

 

 

 

 

 

All the kids’ therapy was cancelled today due to an ice storm hitting Missouri… although we haven’t seen any ice as of yet.  I know they were hit by the storm down south, but we woke up to sunny skies and the most threatening thing that’s happened are a bit of gloomy clouds.  I’m totally ok with it, however.  I’ve been so productive today!  Having a day off from therapy has been just what I needed to get my energy back apparently, and Jacob’s PT said she could add a couple days on to the end of the program, so we aren’t actually losing any of our really important therapies!

I feel like we have “started school again” about a million times this school year, but we are off of our Christmas break officially and starting slow with Bible memory work, reading and math.  The kids are responding really well to the added structure.  I’ve also got a load of laundry done today, did some paperwork and we have been doing our therapy homework with Jacob.  He took another step for me today!!! I was so excited.  Hopefully I can get one on video one of these days!

Hope has homework to do also, but she went back home with Daddy this weekend so I’m not in charge of that.  He went home early for fear of being iced in so far away from church.  So we miss him a lot, but hopefully without all of our distracting selves he is getting a lot done. :)

I am still feeling really positive about therapy.  I’m mostly excited about what we are doing with Jacob in physical therapy and I’m mostly excited about what Hope is doing in speech and occupational therapy.  Her therapists yesterday suggested some interesting approaches to therapy with her, and we are going to try those out next week (stay tuned!!).

For Jacob, they ordered quad canes (with four points) for him to try and also single canes to try.  His tripod canes are just so big and bulky at the bottom that it’s hard to walk without him running into the base.  And an added bonus is, if we move to a smaller base it will be another step in the direction of independent walking – which is what we are shooting for!  We get to use them in therapy for a few days and decide if we want them before we buy them, which is super helpful.

And now I have a really grumpy baby… toddler… I know, I know.  But I’ll still call her the baby anyway, and she’s grumpy, so I’m going to sign off for the day.  Stay warm and safe everyone!

 

Happy Birthday Solnyshka!

Somebody’s turning twelve today!!  Where does the time go?!

img_0916

 

 

Some things change and some things stay the same.  Her smile hasn’t changed one bit.

I hope your birthday is as bright as your smile sweet girl!

You are my Solnyshka,
My only Solnyshka.
You make me happy
When skies are grey!

You’ll never know dear,
How much I love you.
Please don’t take 
My Solnyshka away!

Love,
Mommy

A Restful End

Wow has it been a whirlwind of a week.  We drove up here early Tuesday morning for the first therapy evaluations, checked into the Ronald McDonald House, went back for more therapy evaluations, somehow fed the children in between, went back to the RMH for dinner and loaded Daddy, Jacob and Hope up in the van to spend the night with some local friends (since we only had room for four of us in our room) and had a bit of a fitful and restless night.

Woke up Wednesday morning, still trying to get our schedule down.  Quick breakfast, therapy was bright and early, we were behind all day long for some reason and that day wasn’t any easier or slower than the last.  Jake had to drive back home for work during the day, lots of craziness and optimism about how therapy would go.  Got to check into a bigger room so we could all stay together, moved everything out and over.  More business, a little better sleep.

The day before last we had another very full round of therapy sessions, lots of coming and going and trying not to be late.  Did I mention it was SO COLD this week?! Of all the weeks to have below freezing temperatures the Good and Gracious Lord decided that this was the best week to do that.  I love Him, but I just don’t understand Him sometimes… Getting five children and two wheelchairs in and out of a van multiple times a day when it is so cold is… a growing experience, let’s just call it that.  It’s an exercise in being thankful and learning to appreciate the good things.  Right?  Right.

Then Jake had to leave that night to go back home again, and we had a break from therapy yesterday morning, a bit of a breather, or so I thought.  Stephen woke up very sick and with some concerning symptoms.  My bestest friend in the world who is coming to stay with us and help out this month (YAY I AM SO EXCTIED!!!!) had her flight delayed by about seven hours and I was just telling myself that God was in control.  Somehow all crises were averted and all therapies took place and Jacob took his first ever independent step and we seven, tired and sick and stressed, piled back into the freezing van to come back to our “home away from home”.

And then a quick dinner and good-byes to Daddy again as he left to do the Epiphany service (a blessed Epiphany by the way!!) and then Candy Land and bedtime stories and cuddles and sleep.  And another long evening of being alone.  It felt like I should have been sitting at home with some sort of delicious celebratory dinner and giddily (is that a word?) talking with my hubby about how our son is going to walk and how proud I am of him and what amazing things this will open up for his life.

Concordia Seminary 2009

Concordia Seminary 2009

But the anticlimactic ending it is.  Restful, quiet, peaceful, but nothing exciting or fitting (it seems) for the miracles that are unfolding in front of our very eyes.  We have heard more than once, from more than one person, that if Jacob ever walked independently it would be a miracle.  And I agree.  Yet, I will have to probably wait until the end of the month to actually go home and soak in all the goodness that’s happening, to have that celebration with our family and the love of my life.

As for today, I woke up the usual way, by my adorable little alarm clocks that God gave me.  It’s still dark, the world isn’t as awake as my children are.  I’ll get them all dressed and fed and we will head out the door to go meet Daddy at home.  It’s the weekend, no therapy tomorrow, as Jacob says it’s a “rest day”.  I will get Evangeline and myself ready to go and say good-bye to a dear friend of ours.  A sweet lady who sat behind us in church for the last three years and was always ready to greet us with a smile.

We went and visited her in the hospital on Christmas, and she told me so many things I hadn’t known before.  We showed her how Jacob could stand up all by himself now, and she was so happy.  She said that she had been praying for him to walk since the day we brought him home.  She said such kind and lovely things about our family and blessed me more with her words than she could have possibly known.

Such a lovely woman of God, and it seems so anticlimactic to end the earthly life of such a sweet soul with a funeral and a burial… There is nothing exciting or breathtaking happening today, just a quiet, fleeting good-bye.  Yet, even now we see, dimly and through a dark glass, but we see.  This isn’t really the end, not yet.  The celebration is yet to come.  The Resurrection is nearer now than it has ever been, and that will be anything but anticlimactic.  Her life is not over, it is safe and hidden with Christ, and though we are not celebrating today, we will be soon.

Today we give thanks for a restful end, and we await the glorious culmination of the promises to come.  One day soon we will have that greatest of all celebratory meals, with all our family, and with our One True Love.  We will be home, and all will be as it should once again.  For now, we rest and we wait.  We wait even more anxiously than before for the coming of Christ.

May your weekend be restful and quiet and filled with the love and mercy of our Lord.

Therapy Therapy Therapy

Today I promised you I would talk more about the therapy program we are doing.  It’s pretty cool actually.  I have known about it for a long time, but we were just now able to get accepted into the program; we wanted to have Jacob and Hope do it at the same time (for which, the reason should become quite obvious as you read on), which meant they needed two open spots, which is even harder to get.

Fortunately for us they had just hired a new physical therapist and she had a totally open schedule, so they booked us right in!  The therapy program they have here is amazing.  They have great equipment and very experienced pediatric therapists who are used to the complexity of Jacob and Hope’s needs.  But because it’s a bit of a drive from us, it’s not been at all reasonable for us to do our weekly therapy here.  At the same time, the therapy close to us is not adequate in any way for the kinds of things our kiddos need.

The intensive program has been a godsend for us.  Jacob gets 2-3 hours of physical therapy every day and Hope gets one hour a day (she can’t tolerate quite as much).  Not only does this allow us to fit a lot of therapy into a shorter time frame but it also helps build new habits, because we are working on them daily.  Whereas before, in order for Jacob to progress I had to be working with him at home constantly.  That was not a good situation for our relationship or for the family in general.

In addition to physical therapy they are both also receiving speech therapy and occupational therapy while we are here.  So that totals to 2-3 hours of therapy for Hope each day and 3-5 hours of therapy for Jacob each day.  It has been so amazing.  This is only our third day and already Jacob has almost taken his first independent step, he jumped for the first time ever, he learned how to do buttons and we are tweaking all of his equipment and supports so he’s walking much better too.

Hope was tall kneeling earlier today, which was SO cool!  She also used an communication device to ask for more bubbles (she presses a button, the ipad says “more”).  She used it at least twice on purpose!  They are so happy with how visually attentive she is and are optimistic about her ability to learn to communicate her needs.  We really couldn’t be more thrilled with that.

While we are doing this marathon of a program we are staying at the Ronald McDonald House (which is just so amazing).  I had no idea how much their organization does for families!  We are being so well taken care of here, and I would definitely recommend to everyone to go donate or volunteer at their local Ronald McDonald House Charity.  They found us a room that actually accommodates our whole family.

My dear husband is staying with us, because it’s just impossible for me to juggle all five kids and the therapy schedule without him here.  He goes home some nights and days because there’s obviously work he can’t do here, but when he is here he stays up late getting his “office stuff” done and he wakes up around 4am to work some more.  I have no idea how he does it.  He is my hero for sure.  And I miss him because he went home last night for more work and he won’t be back until this afternoon.  Not that I can possibly complain with everything there is to be thankful for!

Volunteers come in and cook one hot meal every evening and sometimes brunches too on the weekends.  They also stock their pantry with cereal, oatmeal, bread, peanut butter, popcorn, snacks, drinks, etc.  And they have a fridge and freezer full of leftovers, so we can eat all three meals a day here.  They also have a full kitchen we are welcome to use and cook in whenever we need to, and our own little pantry and a fridge we can use.

They have two family rooms with TV’s, toys and games and they have a library room too!  They have a little playground outside, and a play area in the dining room as well.  The hospital has a shuttle we can use to get from therapy to the house and back when I don’t have a vehicle, which has saved us a couple of times, although it only fits one wheelchair so we do have to work around that.  The staff have all been so wonderful and I have no idea how we would be able to manage this month without the help of the RMH.  We are just so blessed to be here and so thankful that God has provided everything that we need.

The therapists have mentioned that, especially for Jacob, it seems like we came at exactly the right time in his development, just as he’s learning to stand independently.  And for Hope, she has just hit her emotional stride to be able to handle an intense therapy program like this.  The timing couldn’t be better for either of them, and our Lord had it all planned out so much more perfectly than I could have.

I won’t bore you with more updates today (my husband seems to think that my posts are too long, but I tell him that about his sermons so I guess we’re even… just kidding, love you sweetie!!) BUT I do have some pictures!!  Enjoy!  And if I can I will write a little more tomorrow. :)

 

Ball Pit

Kyrie joining Jacob in the ball pit during occupational therapy.

 

The kids checking out one of the family rooms at the RMH. Can you find all five? :P

The kids checking out one of the family rooms at the RMH. Can you find all five? :P

 

Jacob at physical therapy in the "cage" learning to jump for the first time!

Jacob at physical therapy in the “cage” learning to jump for the first time!

 

Practicing buttons at Occupational Therapy. It only took him a minute to do all three!

Practicing buttons at occupational therapy. It only took him a minute to do all three!

 

Hope tall kneeling at a table for physical therapy!! I can not believe how far she has come. <3

Hope tall kneeling at a table for physical therapy!! I can not believe how far she has come. <3

Love to all!!

EDIT:  I have no idea why all my pictures are turned the wrong way.  I fix them on my dashboard and they are correct in my editing box but then when I publish they’re all backwards again.  So… if anyone knows what my problem is let me know cause I have no clue. Haha

2nd EDIT:  FIXED!! Now they’re all backwards in my editing box and the right way on the post.  I feel like I’m going crazy, lol!

Peace and Joy

It’s been a long time.

If I do have any readers left, it’s probably only those of you who have subscribed and get a random email of my return.  It’s hard to come back after such a long time and post here, but my husband encouraged me to write, thinking there would be people who’d love to hear from us, so here I am.

As most of you know by now, I quit Facebook a while back, I don’t miss it at all, but when I reactivated my account to look for an old video the other week and saw all the things so many of my friends and acquaintances are going through, my heart just sank.  I’ve really been quite secluded from the rest of the world (living under a rock I think is what they call it).  And although I am able to be more present and focused for my little family, it is not without its sacrifices, and I do miss my friends and the adoption community.

So much has happened over the last year, and yet I don’t feel like much progress has been made until just recently.  It’s difficult to write when you have no good news to share, and although there has been ups and downs, the downs seem to swamp the ups and I am often left feeling like we are going ever backward and never forward.  I want to share our journey because I do think we have been incredibly blessed and I want to share our children with the world because they have changed people’s lives and that’s an amazing gift!

On the other hand, I promised that I would not sugar coat things and I’d be honest here.  And sometimes when hard becomes unbearable, there are just seasons that I would rather not share with the rest of the world.  Perhaps that’s selfish of me.  But there are many moments I’m not sure how to survive without being a little selfish.  So I do hope that the world and my dear readers and my cherished friends and loved ones will all forgive my lack of contact.  Whether it’s here or on social media or by email or phone, I have not really kept up my end of the relationship and for that I am sorry.  Especially since you all have been so faithful and kind to our family through everything.

And with that said, I’ll move on to what most of you really want to know.  How are we doing??

We are doing alright.  The proverbial light at the end of the tunnel seems to peek through much more often these days than it ever used to, and for that I am thankful.  I am still very much dealing with my Hashimoto’s diagnosis.  We don’t have it under control, and sometimes it seems that we get things stabilized and then we go downhill again.  Being crunchy I have done my due diligence with autoimmune protocols and elimination diets, but I cannot seem to get to that place where I am actually healthy.

The last two months have been very difficult.  I have gained quite a lot of weight, none of my clothes really fit anymore.  I’m dealing with intense episodes of depression and I’m having migraines that are far too frequent for it to be ok.  And those are just the tip of the ice burg when it comes to symptoms.  At this point I’m ok with not feeling well, I’m ok with being chronically ill.  I just want to be well enough to take care of my family, and after that I’m at peace with whatever comes.  Not yet at peace with my weight, but maybe in time I’ll learn to be more gentle with myself.

I would like to say that the kids are all doing marvelously, the end.  But we all know better than that.  The children are all doing very well, but there are some difficulties there too.  Hope finally seems to have settled after her last episode of medical trauma last year.  She had casts taken off her legs after surgery and it must have triggered some sort of flashback from years past, she literally sat up from the bed (which she had never done) and began punching the poor tech (also she had never done).  For weeks afterward she was a complete emotional wreck.  I couldn’t touch her for three days without her sobbing.  She would start having flash backs again and was totally terrified of any touch or movement.  It was totally heart wrenching.

But last month when we went in to clinic (a long day of specialists) she didn’t cry once!  We were all shocked that through all the prodding and moving and activity that she was remaining so calm.  Doctor’s offices had always been a trigger for her.  At first I thought it was a fluke, but it has held up and she is doing therapy once or twice a day with no tears!  I feel like she is finally starting to blossom.  We have the surgeries (hopefully) all behind us, and she is finally just had time to settle in without any new trauma.  I see so much potential in her and so much life coming back to her sweet self.  I’m absolutely thrilled for her and can’t wait to see how she continues to grow.

(Speaking of therapy, we are currently living at the Ronald McDonald House near the Children’s Hosptial.  Jacob and Hope are in an intensive therapy program, daily therapy for a month!  It’s an amazing program and we are super excited for it.  I’ll write more about that tomorrow if I can.)

Jacob has also made some great strides.  Some things (like academics) seem to be at a total standstill for him. But he is having some breakthroughs.  He just got a new orthotist who fitted him for braces, and she did such an amazing job that he can now stand independently!!  His record so far is nine and a half minutes without falling.  I cried in her office when he stood up for the first time without help; I had been making peace with the idea of it never happening and now we are working on taking independent steps and working toward walking without canes!  He has a long way to go, but we are finally in a good place to start working on some of his goals and figuring out how to best support him so that he can have the best life possible.

Evangeline is doing wonderfully in school, she taught herself how to read.  We’ve been doing little mini lessons on phonics for years, but not curriculum or anything structured.  And she finally put the puzzle pieces together and is reading on her own!  She also loves ballet and does quite well in it.  Her favorite thing to study is science.  She is fascinated with space, animals, earth science and meteorology and the human body – all of it!  And she is quite the artist too.  I’m excited to see where her gifts take her.

Stephen is still our sports guy.  He does gymnastics and t-ball and loves both.  He does some school too, but not too much at this age.  We do a little bit of math, Bible, memory work and reading.  He wants to be a doctor, baseball player, construction worker and a soldier when he grows up, so I’m not sure if he will end up pursuing all of those or narrow the list a bit. I guess we will see. 😉

We still call Kyrie the baby, but she really isn’t anymore.  The therapist called her a toddler today and it made me just a little sad.  I know she’s a toddler, but she’s still just a baby to me.  She loves all her older siblings and wants to do everything any of them do.  She is even developing their attitude so we are nipping that right away.  My biggest concern for Kyrie is her teeth.  They are quite bad and we haven’t seen a dentist who will really give us a direct answer to it yet.  Considering I was seriously hypothyroid with her pregnancy and didn’t know it, it’s not surprising that her teeth did not form correctly, but it is a frustrating problem and I wish I could just make it better.

There are lots of things to come to peace with.  And there are also many things to take joy in.

Peace and joy, those are my prayers for this year.

%d bloggers like this: