Tuesday, June 25, 2013

Catch up updating

The ride continues around here!

Today marks the three week mark of us being here. Three really super long weeks of lots of highs and lows, lots of pain and hard work, and even a fair amount of tears.
Nathaniel continues to work hard in his therapy, and although it is a very slow process he is doing great. I have my first "Family Meeting" on Wednesday where I get to sit down with all of the doctors and therapist at once and hear what they think about how he is doing, what direction we are heading and their adjusted time line. I am in part looking forward to it and in part dreading it. And I am flying solo in it, but I am getting way too used to this flying solo thing. Not that I am saying I am getting any better at flying solo, but I am at least getting used to it! But I am so past ready for God to bring a life partner to make these stormy journeys with me!

Saturday day was this girls birthday.....
that was her....
about 18.5 years ago!
She looks a bit more like this now..
I was bummed to miss her special day... I know she understands where I am and why I am here, but I am still used to spoiling them on their day! This girl is going to have a "do over" birthday when I get home!
The harder thing to miss on Saturday AND Sunday was Audrey's dance show. I have never missed one of her shows. This is a first for me as a mom, and when Mark (her father) texted to say he had been there, I REALLY felt like a horrible mother. But what could I do? There is only one of me... and one is probably enough for this world! Faline, Brianna and Josh kept me supplied with pictures and updates, and Gramie texted me often to tell me how great Audrey was doing, but I still felt awful!
Thankfully I have pictures...
And I ordered a DVD, so when I get home we can all watch it together.
But it still feels like a mommy fail.
Thankfully the Lord gave me something else to focus on for a bit on Saturday.
Our DEAR SWEET friends the Jansen's came up to hang with us on Saturday. What a TOTAL TREAT for the second week in a row! It is SO GOOD to see faces from home, to get hugs and to simply hang out. Even when kids are being KIDS, and time is limited, and we are tired... it is still SUCH A BLESSING to see friends!
You see those SMILES????
Those smiles are PRECIOUS and a gift and we are so blessed that Bea, and Kaleb and Gavin brought  them to us!
After Bea and the kids left on Saturday Nathaniel began having more bladder issues. Things really haven't balanced out for him since the 7 days of Foley. But Saturday night Nathaniel had passed 5 stones. Poor kid, that has just GOT TO hurt. He is still having issues, so we FINALLY got an ultrasound tonight. Hopefully we will have results tomorrow. With everything else that is going on, I really hope either he has passed all the stones, or that the remaining ones are small enough to do a flush and get out. Really? Not ready to head back under anesthesia yet!
Sunday was a very low key day. Nathaniel didn't feel good, I was struggling emotionally and the Lord was walking me through another battle of the mind too. To say we were both BLAH would be an understatement. We did journey outside a few times to Nathaniel's favorite tunnel for a little fresher air and some sunshine.
He even talked me into getting in his tunnel with him... ONCE!

Nathaniel's favorite hangout when he's feeling down.
The other fun thing we did on Sunday was figure out how to wash Nathaniel's hair for him! He hadn't been able to really bathe since before his surgery, and his hair was driving him NUTS!!! SO the doctor told me as long as I didn't get his back dressing wet, I could wash his hair!! We got creative with his bed, and in the end he was MUCH happier!
Sunday evening Audrey headed over to our dear friends the Dicus's home. I guess I should have warned them how much Audrey misses having a dad figure in her life.... seems she and Chris got a little hyper together! It was fun to get silly playful pictures from MeLisa of Chris and Audrey having giggles and fun.
Monday morning brought more highs and lows.
Nathaniel was still in pain from his back AND his bladder tract. But at least we had an ultrasound ordered for later in the day. And the high....
Was that our WONDERFUL friends the Dicus Family came up to see us..... It was lots of fun to hang out with Luke, Anna Grace and MeLisa for a few hours.
AND they brought MY PRINCESS with them!!! I can't explain the hurt in my heart being so far away from her day after day. This momma doesn't do long distance well. It was so good to have her here with us for a few hours. I feel like I am stealing time every time I get her for a bit. But it helps my heart so much too. MeLisa can't possibly know how very much it means to me that they all took the time to come see us AND bring Audrey in the midst of so much in their own busy lives. Such dear sweet friends we have. They make this journey more bearable.
The kids laughed, and made a video, and played sock football and just were KIDS for a bit. MeLisa and I got to talk and be "normal" for a while and I got LOTS of hugs. The day was truly blessed.
Nathaniel had to do his normal therapy in the midst of all of the visiting. And he had new braces made yesterday too!
The doctors and therapist are not liking what his SMOs are doing for him right now, and they don't fit right post surgery either, they are giving him pressure sores. So the team said "new braces" and my heart flipped. Anyone who walks the SB journey knows that changes in braces aren't usually an easy thing. And Nat has been in SMOs for a pretty long time. So I was expecting the long drawn out discussion that we have been having at home about what is "right" for him. But not at all. They said "AFO is the next thing to try"... I was questioning the carbon floor reactive as we had been looking into those at home. But they said they just make up the AFOs here and we try them and that tells us where to go next. I was floored. Usually there is such a hassle with insurance, and casting and fitting and blah blah blah.... but nope. They casted him.....
And less than an hour later he had new kicks on! Amazing.
So these are temporary kicks, to try them out and see if this is the correct brace for Nathaniel. Can I tell you how IN LOVE I am with this theory??? So in love. Excited to see what will happen with this!
Also, right before dinner Nathaniel finally got his ultrasound....
and drum roll please....
the doctor JUST came in as I am writing this....
and there are NO MORE STONES!
Thank you Lord.
I am not sure I could have dealt with more anesthesia this soon.
We ended Monday with a sweet picture from MeLisa of Audrey being a KID and having a BLAST. Makes my heart happier, even if I can't be there with her.
At least she is getting some summer and some fun!
Today is rainy and gloomy... and so is my mood.
But I have my ipod....
and my bible......
and my  friends....
and I am praying this gloom away!
Prayer points for today:
*For strength as we continue this long long journey. That our hearts not grow weary.
*For someway to make Friday special for Nathaniel
*For continued healing and strength and progress for Nathaniel
*For a personal journey that the Lord has me on, that His path is the path I stay on, and that I see God's leading in each step of the journey.
As always, we love each of you taking this journey with us SO MUCH. Thank you so much for praying with us, loving on us, and encouraging us so much. I so could not do this without so many of you behind us keeping us lifted up. Seriously. Couldn't do it. You all are my constant reminder of God's strength and compassion right now.