Tuesday, February 24, 2015

Re-entry….

Even the Florida sky was sad that I had to leave yesterday….

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But I had such a restful and relaxing time during the couple days I got to sneak away and enjoy some friend time in Jacksonville, Florida.

On Saturday morning I was up before the sun (shocking I know!) and was headed to the airport by 5:00am.

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And I got out just in time….it started snowing here around 10:00 and home got 5” of snow plus a layer of ice till it stopped late Saturday night.

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By 11:00am on Saturday I was enjoying the blue sky and palm trees!  God really smiled down on us as it was chilly all last week in Florida but on Sat, Sunday and Monday we had temps in the high 70’s.

And then today they were back down into the 50’s.  What a blessing!

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Basically we ate and slept.  And then ate some more. I could eat soooo good there!  To have such a great selection of gluten free restaurants within walking distance of where we stayed was a.m.a.z.i.n.g.

I felt totally spoiled.

We went to a Mexican restaurant called Cantina Laredo. They make this AMAZING homemade guacamole right at your table.

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But not only was my belly well fed…..my spirit and soul were too.  To just get away from the every day stressors of life for 72 hours and just be with someone who really “gets” you is an incredible blessing.

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I got to sit by the pool and just “be” for awhile Sunday afternoon. 

Just me and the ducks.

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Oh and I got to enjoy a Starbucks of course!

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And a delicious gluten free cupcake to top off a perfect, lovely, WARM afternoon…..and was reminded to just take one cupcake/one crisis/one day at a time.

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We loved that Mexican restaurant so much we went back for another round before I had to get back on the airplane and fly home yesterday afternoon…..

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I was afraid today would be hard to get back into “life.” But it wasn’t too bad….it was FREEZING cold again, which I detest of course, but I think just getting away helped me feel more at peace. 

I came home rested and renewed and was able to just have some complete thoughts this past weekend.

Everyone missed me…..it was sweet to be welcomed home by teenage boy bear hugs.

They survived on pizza. Literally. They tell me it has all the major food groups so they are good to go.

(I did leave them 5 DIFFERENT meals to make and eat….)

But I think my Boomer missed me the most……he followed my EVERY step this morning.

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It got to be a bit ridiculous.  Especially after he tried to climb up into my lap!

Thanks for holding down the fort honey……it really was a truly perfect weekend. <3

I am so thankful I could go and that the weather was so beautiful…...it was just what the doctor ordered!

Thursday, February 19, 2015

3 years ago…..

We were in Guiyang adopting Josie.

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Her gotcha day was “officially” on Feb. 19th, 2012.  But since we just “happened” to run into her foster family the day before, and they just “happened” to be our friends, we may just have “happened” to have her spend the night with us the night before gotcha day. Winking smile

Yesterday I wasn’t planning on celebrating her gotcha day but the day just kinda evolved and since I was making “Chinese” and since I had her gift ready and since all her brothers were home we decided to celebrate her gotcha day last night.

Which I guess was technically her “real” gotcha day anyhow! lol

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She enjoyed the special meal and the special veggie tale movie.

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Then today I had to take her to her yearly CP clinic appointment.

I was secretly dreading it becuz had a feeling I knew what the Dr. was going to suggest we do next for Josie.

And I didn’t want to hear about it.

But I really like and trust this doctor and we had a good talk and I had a good cry and I think we have a good plan now.

We have realized that Josie’s walking ability is getting less and less as she is getting heavier and heavier.  Her right foot is really turning out and it is causing structural damage to her foot. Her heel cords just aren’t strong enough to hold up her body weight.

She is getting a bunion and her DAFO’s can only handle so much.  They are basically working like a band-aid.

So Dr. Fortuna wants to do a foot surgery to hopefully give Josie (maybe) 5 more years of walking ability yet.

(In her medical opinion she thinks Josie will only have about 3 years until her knees will give out and then she won’t be able to walk anymore.  So if we do the surgery she may gain another 2 years or so.)

So not really “great” outcome either way.

She is going to end up being wheelchair bound.

But if we can give her the ability to walk until she is 18 (in 6 years!)  then she can leave the house and go into an assisted living facility.  That would be the “goal” anyhow.

We don’t have room for a wheelchair fulltime in the house.

She shares a room with our school room so she can’t just hang out in her room.  There just is not enough room. Period.

This surgery will require her to be in a NON WEIGHT bearing cast for 10 WEEKS.  Then another 4 weeks in another cast. 

Then LOTS and LOTS and LOTS of physical therapy.

This is when I started crying.

I was honest with Dr. Fortuna.  I told her I can’t do another big surgery here.  It is just too much.

She will need WAY more help and care then we can give her.

She is 100 lbs now vs. the 45lbs she was when we did her hip surgeries.

And then I can’t drive her to therapy 5x’s a week.

So. 

The plan is that she will have the surgery in July and then when she is discharged from the hospital she will transfer to a rehab care facility close by (it is about 30 minutes from our house) and they will care for her and then do the intense therapy there.

But that will be 4-6 MONTHS of her not living here and living at this rehab center.

Whoa.

That was so not on my radar this morning.

And then what will “re-entry” look like?!!? We will have gone back to our “normal” life again.  And then to start over again with nursing and caring for a child with moderate disabilities…that is going to take a lot to get used to again.

But we have Ava’s “big” bone graft surgery this summer.  So it probably is a blessing in disguise.

It is just going to take awhile for it all to sink in.

Will insurance balk at this?

Of course.

But Dr. Fortuna has worked with this rehab place before and she thinks it will be approved considering it is so totally medically necessary.

If they don’t….then we won’t be able to do the surgery.

Yuk.

Yuk.

Yuk.

Unfortunately 3 years ago we got Josie at her “peak.” 

Knowing what I know now….would I say have said “yes” to her file?!?!

That question I can’t honestly answer today.

But then when I question things God speaks to me through a song…….

Glorious Unfolding:

Lay your head down tonight
Take a rest from the fight
Don’t try to figure it out
Just listen to what I’m whispering to your heart
‘Cause I know this is not
Anything like you thought
The story of your life was gonna be
And it feels like the end has started closing in on you
But it’s just not true

There’s so much of the story that’s still yet to unfold.

Trying to believe.  Trying to just trust.

That there is much left to unfold.

So hold on to every promise God has made to us
And watch this glorious unfolding

http://youtu.be/qVxxTsSUFdw

Saturday, February 14, 2015

I <3 today

Four years ago the way we celebrate Valentine’s Day changed.

Four years ago today we were in COLD Taiyuan, China picking up a very scared and very upset 3 year old.

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This little one started out her new life with us on her Baba’s lap…..

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it is where she felt most safe.

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Even though she still wasn’t too sure about him yet.

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(I should get extra credit for having us all wear red for Ava’s Gotcha Day, on Feb. 14th, 2011…just sayin’!)

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Even after we got back to our hotel she wanted to just sit on her Daddy’s lap……

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She couldn’t suck out of the sippy cup due to her cleft palate but she was a pro at a regular cup.

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Finally after awhile she started to warm up and she figured out that this strange looking guy isn’t too bad after all.

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And even today Ava’s first choice is her Daddy’s lap. <3

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Now he may have made her special pink pancakes for a Valentine’s breakfast!

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But even without that special treat, she would still chose her Daddy’s lap anytime of the day!

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She is growing like a weed!!!  And her speech is really improving!  I hear real progress.  She isn’t looking forward to her “big” surgery this summer…..but she wants the hole fixed in her gum line.  She is trying to break her thumb sucking habit.  And during the day she has pretty much given it up.  But she still sucks it at night.

After her bone graft surgery Dr. Samson would like her totally broken of that habit since after that we will be tackling orthodontic work shortly after the surgery.  And that means NO more thumb sucking! Sad smile

She asked for pizza and dumplings for lunch!

What a combination!

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Tonight I was so blessed to have all the feet under the table and I could make a “special” steak supper for my boys.

They say that a way to a man’s heart is through his stomach….and that is so true.

The boys love food and the way they feel loved is when I cook “good” for them.

So I made steak, homemade potato salad and salad.

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And a good way into a Mama’s heart is to give her a gift certificate to her favorite restaurant with a promise of a date night together! Thanks T! <3

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And sweet Lena made her Mommy and Daddy a special card.  She has such a sweet spirit.

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I cherish the memories we make around the table.  Tonight we had fun reminiscing about Ava’s China trip.  We talked about the families we got to hang out with those 2 weeks and also how Ava would get so angry and kick her shoes off.

No matter where we were.

She had the gift of a temper tantrum for sure!

We are thankful that the rages are gone and she is just a funny and sweet little girl now.

She does crack us up. Every single day.

Steve is sending me away for my Valentine’s gift.

And it is the bestest gift he could give me.

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Next weekend I get to fly down to Jacksonville, FL and soak in some sunshine and catch up with a special friend.

I need this time away so much.

Josie has been very draining.

We have been to so many appointments.  She had to have a 48 hour ambulatory EEG on this week. We still don’t have a plan concerning the seizure like events.  Her dafo’s are giving her blisters since she isn’t walking as much or “correctly” anymore.

It is just one thing after another.

If I wanted to be a nurse I would have gone to nursing school!

I need some time to just step away from the demands of caring for a SN child and get my mo-jo back.

This is the forecast for PA this weekend:

Today: Light to moderate snow showers. Snow squalls this afternoon bringing briefly heavy snow and low visibility. 1-3" of snow expected. Winds increasing late, then turning gusty. High: 30. Winds: S to NW 10-20, increasing to 20-30 late with gusts near 40 mph.

Tonight: Very blustery & dangerously cold. Blowing snow likely. Low: 7. Winds: NW 25-35 gusting to 50+mph. Wind chills: Near -20.

Sunday: Blustery. Chills near -20 around sunrise. Chills near 0 at best. High: 14. Winds: NW 15-25 mph (gusting to 50+mph early).

Monday: Mostly sunny. Windy & very cold. High: 18. Winds: NW 10-20. Wind chills: Near 0 at best.

Seriously?!!?!?

-20 with the wind chill!??!?!

I’m staying put by the fire for sure tomorrow!

This is the forecast for Jacksonville next weekend:

Jacksonville weather!

I’m SO there.

Thank you honey for encouraging me to go and for holding down the fort while I’m gone.

And for working so hard so I can go.

(And thankful for the airline miles that I could get a ticket for “free!”)

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But I try and live in the moment as it is a present. Yesterday is past and tomorrow isn’t guaranteed.

So today I so enjoyed just hanging out at home with all my kids. <3

 

 

Monday, February 9, 2015

Post-op Day 4

If you are squeamish you may not want to look at the post-op pictures. :/

Jared and I went to the doctor this morning to get his bandage off and we got the first glimpse of what his leg looks like.

It is a bit gross looking….but I guess it doesn’t look as bad as I was expecting.

When Daddy saw the picture he said, “Holy pin cushion!”

That pretty much sums it up.

Jared has over 40 of these little incisions all up and down his leg.

They are still oozing pretty good so the nurse re-wrapped everything and then had to put the ace bandage back on and then it took two of use to get the compression pantyhose stockings back on. 

What a circus!!!

I wouldn’t want that nurse’s job ever!!  Ewww……

So needless to say Jared is taking a sponge bath and washing his hair in the sink today as I’m not re-dressing this more than we have to!!

She thought in 3 days it should be scabbing over and we wouldn’t have to dress it with gauze but he still has to wear the compression pantyhose (lovely) stockings until Monday.

And then he should be “good to go.”

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Dr. Scorza said that 40 isn’t “too bad”…..he had a lady that had over 200 of these incisions on one leg before!

Holy Moly!  Can you imagine!?!? 

Jared is feeling pretty good though now.  He still can’t bend his leg with the bandage on, which makes walking difficult, but the pain level is definitely better.

It should be interesting when we have to get those stockings back on Wed. morning after I change the dressings…..Oyi!