Ramblings of a momma

Yea yea yea.... I know... it's  been a while.... oh well! Such is life,  move on! 

This morning I am sitting here in a place we keep seeming to come back to (Children's  Hospital Oakland) with little to do besides wait for our appointments. And in this my heart felt called to write. It's kinda odd how God keeps bringing me here for Nathaniel's care, then using the time to do some major works in my heart and life, but who am I to question God? So I decided to wander down this path and see where He leads today.

Right now Nathaniel and I are just hanging out at Family House and waiting for his appointments this afternoon. He is happily playing on his electronics, but my brain won't stop spinning. 

As I lay here thinking and praying I am struck over and over again with the fact that this journey  with Spina  Bifida  and my family started 15 years ago, almost to the day! It is very surreal to me that we are once again facing major surgery almost 15 years to the day from when all of this began for us. So very much has changed in those 15 years, and yet some things haven't changed at all. There are way too many things to list, but these are the ones that strike me deepest today:

Nathaniel is no longer a little baby growing inside of me. He is a young man with a personality and spirit all his own. It's still my job to care for him to the best of my ability, but he has a voice in that care now too.

Spina Bifida isn't a big, scary mystery anymore, it's a part of our life that we live with and deal with every single day. In the last 15 years not a SINGLE day has gone by that Spina Bifida hasn't had a part in.

I still hate all things medical and most of all the thought of cutting a body open, and yet this will be Nathaniel's 45th surgery in his life! 

I am still terrified of shunts, and  while we have been spared the shunt journey up until this point, tomorrow Nathaniel will be getting a shunt and our shunt journey will begin.

There are many things rambling around my heart and mind, but most of all I keep going back to the beginning, and it struck me how many new people are in our lives that don't know the story of 15 years ago. So I decided to link it here, for those of you who want to read it. These are my memories of the beginning of our family's journey with Spina Bifida, the journey that began 15 years ago tomorrow.

LINK 1
http://simplysoares.blogspot.com/2009/04/9-years-ago-yesterday.html?m=1

LINK 2
http://simplysoares.blogspot.com/2009/04/so.html?m=1

LINK 3
http://simplysoares.blogspot.com/2009/05/wow.html?m=1

And by now I am sure you have had enough of my ramblings for now,  so I will sign off and dive back into my bible.  But in closing can I ask a favor of you?  Could you keep this afternoon's appointments in prayer? For clarity on the plan. For peace in the plan. And for God's ever perfect plan to be the one that is followed.

Until later, when I have a plan to share with you...

Beach Magic

If you know us at all, you KNOW we LOVE the beach. It is part of the fiber of who our family is. Also, you probably know about out "other" family... our Project Surf Camp family, which is also part of the fiber of who we are.

 

 

With Nathaniel's recent health struggles and surgery I was very worried that we wouldn't get to experience the magic of Project Surf Camp this summer, and my heart was breaking over that. I think Nathaniel's was too, as it was ALL he talked about while in Rehab. You can't possible imagine the excitement and relief I felt when Dr. Sun told us he was released to surf. I actually did cry tears of relief and joy. Our family was able to join PSC for the opening day of surf camps season this year, yet I have been remiss in blogging it because the emotions were just too raw. I am going to take a stab at it today, and hope the tears stay where they belong!

 

To us, Project Surf Camp is:

 

 

Family that welcomes us home with open arms and love in their hearts.

 

 

Accessibility to one of God's greatest gifts for ALL!

 

 

A chance for siblings so differently abled to do something magical together.

 

 

It's a time for personal victories.

 

 

And a time to share the blessings with treasured friends.

 

 

To me personally, this day was

 

 

About contagious JOY! From a boy who had MAJOR, life altering spinal surgery just 38 days before this!

 

It was about personal victories and finding out that no matter how changed his body is, he can still fight back and be victorious!

 

It was about our family finding normal again.

 

And it was about PRAISING the Lord for His GREATNESS!

 

On this special day at Project Surf Camp, I hung up my hat as Board of Directors member, I didn't even take many pictures (and if you know me then you KNOW that is a miracle),

 

 I just BASKED in His glory.

 

I let Him wash all around me as I prayed and worshiped Him for His GREATNESS.

 

I wept tears unending.

 

And I TOTALLY enjoyed the precious gift of my children SURFING TOGETHER!

 

If you wonder why we say that Project Surf Camp CHANGES LIVES, this is just one small story of the HUGE greatness this camp does.

 

If you want to experience TRUE magic, and God's blessing, let me know, I would LOVE to take you down to the beach with us, get you hooked up to volunteer.... I GUARANTEE you will walk away a changed person.

 

I am excited to say, we are heading down to the beach today... and I can't tell you how much my heart needs a little magic today!

 

I also want to mention a quick THANK YOU to Breann Hollon of Breann Hollon Photography for the AMAZING images of this special day that she captured. My dear, sweet friend volunteers her time and talent to come out and take fabulous pictures that she provides to PSC families free of cost. What a sweetheart! But she also does great work here locally too, so if you need so fabulous photographs, make sure you look her up!

 

 

 

 

 

 

 



My Cup Runneth Over

I am sorry it has been so many days since I updated. We have been basking in the GLORY of all God is doing, and running like crazy to try and keep up with life! Let's Go back to Tuesday and see what has been happening.

 

 

Tuesday morning, after getting his kicking new shoes, Nat rocked his last couple of therapy sessions. While he was working away, I was packing away. We sure managed to get a LOT of stuff over the 6 weeks we were at the hospital! But I got it all packed up, checked out of the family house again, and got the car packed.

 

The Rehab unit is mostly kids that are there for long periods of time. Believe it or not our 6 weeks was actually pretty short. They deal mostly with traumatic brain injuries, but also other neurological things (like Nat!) too. One of the cool things that the Rehab team does is throw a party for the kids when they get to go home. These kids work SO HARD with these therapists day after day and they all bond so tightly, to just leave with nothing would be so hard on all of them. So all the kids from the unit gather around the nurses station, as many of the nurses and therapists as possible come over, and they sing and have treats and give the kiddo leaving a gift. It is really cool. Quick, easy and yet provides such great closure!

 

After Nat's party there were a few papers to sign, discharge directions to go over and balloons to collect... and then we were OFF! 

 

One of my now so smart moves became apparent next, as the car told me just how NOT happy it was about not moving for 6 weeks. My battery was dead, sigh. It turns out all of those security escorts back and forth to the family house came in handy for more than just keeping me safe in the mean streets of Oakland! When the security team found out my battery was dead they came right over and jumped it for me. Such kind guys! So, after a little delay, this boy and I were ready to hit the road! That picture is both of us sitting in the front seat of the car, ready to get going!

 

I was totally exhausted leaving Oakland. The emotion and stress of the last 6 weeks had really caught up with me, along with the NEED to see home, to hold my daughter, for my family to sleep all under the same roof and for me to sleep in my own bed! I was sort of concerned about the drive home, it was a long 250 miles we faced, but I just laid it on the Lord and started driving. The first hour or so was heavy traffic and not so familiar roads, but then it was like the load was lifted. The drive was actually so very easy and almost like someone else was doing it. As we got closer to home and back in our familiar turf I started to get anxious again. That happens to me, I just want to BE HOME, even though I know we have about an hour left. Right then is when a dear friend called me and chatted with me (yes, via my hands free set!) all the way till I pulled into my driveway. He kept me laughing and giggling and made those last miles fly by.

 

Then there was this BEAUTIFUL sight. I can't tell you how thrilled my heart was to see out house to pull up to our front door and to walk into MY sanctuary! There REALLY is no place like home!

 

And then my cup really did run over. Audrey and Damen had made a sweet welcome home sign for us, my friends and church had filled our fridge with groceries (and OUR kind of food too!), a dear sweet friend had put diner in the crock pot so we came home to a fresh cooked meal and a house smelling divine, and there were even fresh flowers on my dining room table. I am truly so blessed by the people that God puts in my life.

 

Since being home, I can't explain the PURE joy of being here. From the simple things like friends who came over IMMEDIATELY to give hugs and say welcome home, to the bank tellers welcoming me home with smiles and hugs, to the big things, like my family back together as a unit and to freedom of our own home. It is all such a blessing.

 

 

Being home means so much, like sleeping in a real bed, not the window bed that was 6 inches shorter than I am! Like not hearing the IV alarm sound constantly all day and night long. Like turning the lights out at night so it is actually dark to sleep. Like not having to wear security badges 24/7. Like taking a shower with bare feet, no flip flops. Like having privacy and dignity. Like not having to sleep fully clothes at night! Interestingly it was the little things that drove me nuts there, but the big things that I am constantly blessed by here. I can NOT express how much difference the love and joy and prayers that people pour over us has made in this journey.

 

I usually have so many words, and yet this journey seems to have taken them all away from me and left me speechless. But I did write this status update the other day on Facebook with tears of joy and thanksgiving running down my face, perhaps it can express my heart:

 

"What a day of emotions and love. I can't tell you how my heart feels after brunch with Bea pampering by Heather, walking into my home church for the first time in weeks, a warm welcome from The Rock Harbor Worship Team, hugs from dear friends like Gary & Trish, and finishing the night off with Katy and my PSC family. After the journey we have been on, my heart is humbled and blessed by the love I feel today. There really is NO PLACE like home, and I am SO BLESSED by the amazing people God has put in my life. Tomorrow? You will find me on my favorite beach watching magic happen, and praising Him with tears and joy... I KNOW I won't make it through tomorrow without tears of pure thanksgiving and humility at God's GREATNESS."

 

So for all of you I have left hanging there wondering how we are doing, please let me tell you we are FABULOUS and BLESSED. We are redefining "normal" in our house since Nathaniel is a really different boy than when we left (cognitively and physically functioning different), we are learning to be a family again after so much time apart and we are welcoming God's direction into every corner of our world. And I haven't forgotten the lessons God taught me either, I am making changes, following His lead and opening my EVERY breath to Him and his leading. I have a feeling God isn't done with this journey yet.

 

We love you and will try to keep you updated in our world! As always, thanks for standing with us in prayer and love and support!

 



Catch up updating

Well.....

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.....

 

 

Well...

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.

 

 

 

Just Doing It

I have again been accused of being quiet or not present....

 

And the truth of it is I know it,

 

But don't have the energy to do much about it.

 

I think we are in the "Just doing it" phase right now.

 

Yesterday was the 16th day in a row in the hospital for us,

 

and I think the sort of hospital depression has set in for both Nat and I.

 

 

On Wednesday we were both so tired that we curled up and took naps in my "window bed" together when he wasn't in therapy. We also went outside and played Uno in the courtyard to soak in some sunshine. Nathaniel continues to work SUPER hard in his therapy sessions and is an inspiring  little guy. The world could take a few lessons from him about hard work, perseverance and great attitude in the midst of storms.

 

 

 I mean, look at that schedule... this kid is working HARD all the time. But he is doing GREAT too! He can walk about 10 foot in his walker unassisted now. Not too shabby for 15 days out of major spinal surgery.

 

Nathaniel has definitely hit a round of the hospital blues, but in God's perfect way his worst bout was minutes before his music therapist came in! He had a great session with Matt and worked through lots of his feelings. He was much more stable after that.

 

There was also a special event at the hospital yesterday. I had a migraine and REALLY didn't want to go, but I knew Nathaniel would dig it, so I sucked it up, took lots of medicine and we ventured out....

 

 

And Nathaniel was THRILLED!

 

The hospital had a Meet & Greet with the 501st Legion and Rebel Legion, a group that spreads the magic of Star Wars costuming worldwide. They were very cool, and so kind to all the kids. And WAY COOL about photo ops with the people too!

 

 

Nathaniel's spirits were visually better after a little bit in the company of some of his favorite Star Wars characters!

 

Definitely a "mommy win" moment!

 

My heart is a little torn heading into this weekend. I know it is SO IMPORTANT to be here and for Nathaniel to be getting these fabulous services, but I am still broken hearted over some of the stuff we are missing at home. We have already missed BIG things like Damen's graduation, Josie's dance recital and Traci's celebration of life. And we miss everyday things like serving the Lord with my Open Arm friends, going to church at home, hugging my friends, play dates, my standard breakfast dates and Friday night BBQ & pool tradition. This weekend is another one of those events that I will miss, and this one pierces my heart again. Audrey's dance recital is this weekend... and it will be the first one I have ever missed of hers. Sometimes it is REALLY hard to be a single mom and balance it all, and this is one of those times I HATE being a single mom. But the Lord has a plan, so I will go with it. I will trust Josh and Faline and my mom to make this recital special for Audrey, and I will try not to cry thinking of her, and the FABULOUS RAD show I will be missing. I am so thankful that there are other people in Audrey's life that will make this special for her, and I will sit back and let her be blessed by them this time.

 

BUT I am TOTALLY excited that our dear friends the Jansen's are coming to see us on Saturday AND our friends the Dicus's are coming up on Monday AND they are bringing Audrey with them!!! So hopefully, spirits will be up after the next few days. It is SO nice to see friends and family. I know it is a HUGE trip to make to see us, so we are so blessed by those that can come.

 

As always, we love you and thank you for joining us in this journey in prayer, in thought and in encouragement!



And the ride continues...

Every time I think I have got this journey figured out and the ride is settling out we hit another bump!

 

Yesterday I told you that we had our routine down, and that I was feeling better.

 

Well, this morning that routine was rocked, and I sure didn't handle it with much grace.

 

You see, for the last 6 days at the hospital we have been "living" in this teeny tiny quarters. Quarters where Nat can't get out of bed at night unless I fold my bed up. Quarters with a possessed sink. Quarters where the wheelchair and the walker can't both be set up at the same time. Quarters that challenged me in so many ways.

 

 

But, as I was reminded this morning, we were in the Rehab unit that I prayed for Nathaniel to be in, so who cared if we were in the smallest room there? And on this journey, our whole family is making many sacrifices, so who cares how much it challenged me? And the truth of the matter was that I still had the fabulous family house to go back to. That was my break and sanity.

 

Well, the thing with the family house is that there are a limited number of rooms, and a great many people with needs. The "rule" is that you can only stay a week before you get put on the rotate out list, and we have been there since June 4th... a little longer than a week, lol. So far I have been very lucky that the need hasn't been huge, and therefore I haven't been rotated out, but that luck ran out this morning. And I will admit it, I cried. I looked around me and wondered how in the world I was going to make it work at the hospital so far from home with so much stuff. And I really did have a pitty party for a little while. I am a SMALL town girl, and this town really terrifies me, so having the comfort of the CLOSE place to escape, and the security of my car in a locked parking area and security escorts back and forth to the house, really made me more comfortable. But the truth? This journey isn't about my comfort, it is about getting Nathaniel healthy!

 

So, throughout the day, as Nat worked his booty off in therapy and at all of his work I tried to find that happy place, that place where I was grateful for the fabulous therapy he is getting here, that place where I KNOW God will take us through this journey the way He wants us to go, that place where I can walk with His grace no matter what. And by mid afternoon I found it again. I was ok. I was trusting Him again, and knowing no matter what challenge we faced we could do it. And pretty much as soon I found my way back into his peace and walked with grace, that is when He blessed us. You see, He really did have a bigger, better plan and in His perfect timing He revealed it to me.

 

First a nurse came in to let me know that our roommate was leaving today. We knew he was having surgery, but we didn't know that he wouldn't be coming back to this unit afterwards. She told me that we were next up for a better space, and did we want their space. Of course, I immediately agreed. While the room is still RIGHT next to the nurses stations (and therefore incredibly LOUD 24/7) the space was double what we had. I was happy, it would work out fine, we had dealt with the noise for almost a week, we would just continue to deal with it. So I started packing up to "move". I was kind of laughing at myself for being so insistent that EVERYTHING had to go on the bed so that we could push the bed like 8 feet. I mean REALLY? But for some reason that is what my head insisted I did!

 

Next, Matt the Music Therapist came by. We have been trying to coordinate music therapy for Nathaniel for like 10 days now! But Nathaniel's schedule and Matt's just never seemed to line up. Well today Matt came by before he put anyone else in just to make SURE he had time slots for Nathaniel this week. How sweet is that? So for Nathaniel's 6th and last therapy of the day, he and Matt had their first session together this afternoon! Nathaniel was so happy! Totally sweet.

 

 

After music therapy the nurse came in to "move" us. What went down next is kind of funny, and totally God.

 

Nurse: You packed ALL of your stuff?!?!?!

 

Me: *totally embarrassed* Yes... I just felt like I HAD to for some reason.

 

long pause

 

Nurse: You wanted a quieter room, right?

 

Me: Well yes, we wanted a quieter room, and one with more space so Nathaniel can use his equipment safely. We will be happy with half of that though, the more space will help. 

 

Nurse: But REALLY you want bigger and quieter, right?

 

Me: Well.....in a perfect world, yes.

 

Nurse: I will be right back.

 

A few minutes later he comes scurrying back in "hurry, hurry, we have to hurry"

 

And he rolls Nathaniel's bed out of the room....

and down the hall.....

and Into another room WAYYYYY far away from the nurses station....

and to a window room!!!!!

 

God is SO GREAT!!!

Welcome to our new room...

The window rooms have BEDS for the mommy!!

And drawers for stuff to go in!

And SPACE to use the equipment!!

 

Nat can even sit IN his chair in the room!!! So much better for him than being in  bed so much!

 

And his BED, and CHAIR AND WALKER all fit, WITH room to use them!!!

 

God is SO GOOD.

Silly me for even doubting him for one second!

 

It turns out they were going to put us in this room, but then the first nurse told me the wrong thing and instead of making her look bad they just decided to do what she said. But the second nurse has had us before, he knew how hard of a time Nat has with the noise, and he decided to "fix" the whole problem. But the thing was, there was another patient on their way up from surgery... he needed to move us, establish us in the better room AND get back and clean the old room BEFORE the other patient made it up from surgery. Obviously it would have been easier to NOT do this fabulous thing for us, but he did it anyways. So blessed.

 

Lesson learned today....

God is Good ALWAYS.

One should not doubt His goodness.

Trust in Him, walk with Him and KNOW that His plan is better than ANYTHING our minds can come up with.

And PRAISE Him in all things!

 

So, this girl, she was humbled today, and she is SO thankful her Father has a bigger plan. We are ready to keep walking on this path.

 

As always, thank you for walking this journey with us, thank you for praying for us, and THANK YOU for loving on us. We miss home, and family (bio and church) SO MUCH, but you are all so encouraging and such a blessing to us. God was so good in giving each of you to us, please know we treasure you and your places in our life.

 



Finding a Rhythm

It seems to have taken us forever, but I think we are starting to find a rhythm in this journey!

 

In the rehab unit, Nathaniel is getting 2 PT sessions, 2 OT sessions and 2 Speech session EVERY DAY! Wow! That is a A LOT of therapy, but that is the whole reason we are here. This is going to  be a season of HEALING and RE BIRTH for my boy. So, with this sort of schedule for him, we are finding ourselves falling into a rhythm finally.

 

First we climb out of our bed mazes in the morning....

 

If you missed yesterday's post about the fun with beds, you really should go check it out!

 

This is our living space right now. Notice no wheelchair or walker room. Notice the sink mommy's bed is under. Yes. It's an adventure! We are still praying for a window room. It would be SO much better! Especially since the family house is filling up and I might get rotated out of there soon. But God's got it.. I know He does!

 

After we climb out of our bed cages, we get dressed and do morning self care. This is still REALLY difficult for Nathaniel, as he can't balance alone yet, and his flexibility is not too great yet either. But we get it done. And we get it done in a TINY bathroom too. Sigh.

 

Next up breakfast. I will usually order Nathaniel's food, then the two of us will take a wander down to the cafeteria to get mommy's coffee. By the time we get back up to the room, Nat's food is usually there and we have breakfast together.

 

His first therapy appointment is usually at 9, so at that time he goes with the therapist and I wander back to the family house to shower, have some breakfast myself (I have a place to store my food from home there, so it is cheaper and healthier to eat there) and if I am doing good, I also catch some fresh air and sunshine while there. Today I was given a key to the GYM at the family house too! I am excited because now I can add exercise to my morning routine too!

 

 

Usually in the mid day Nathaniel has a break from therapy for lunch and we play a game or do art during this time. We had to borrow some new games from Child Life today, as I am tired of getting my booty kicked at Sorry! We will try Uno and Battle Ship this weekend and see if I do any better at those.

 

In the afternoon Nat has more therapy and I try to go outside some more.  Sometimes I head back to the family house to chill, or do laundry, or shower again if my back is hurting. Other times I go to the patio here and listen to music. Either way, I try to take some me time while Nat is working hard.

 

 

In the evening we walk down to get my dinner, and take it back to Nathaniel's room to eat together again. Tonight I had the best dinner I have had in a long time! Eggplant Neapolitan, Apple Feta Salad and roasted squash.... GF, and veggie, and full of taste. A cafeteria win tonight.

 

After dinner we play more games, and get ready for the night. Nathaniel is a rock star for all of the hard work he is doing, and I am figuring out how to stay sane and take care of me some in this journey too.

 

 

A high point of today was that Nathaniel's pressure sore on his face finally healed! It hurt my heart to see that big owie on his sweet face every time I looked at him. It is wonderful to see his beautiful face sans owie today!

 

 

Another high point was this great blanket that Nathaniel was given today. For anyone that KNOWS Nathaniel, then they KNOW this blanket is PERFECT for him... green AND football?? Perfect match! God's hand even in the small things, like the gifts from strangers perfect matches to his likes and passions!

 

But the HIGHEST Point from this day???

 

 

My baby girl is here to see us!
 

I have missed Audrey SO MUCH, and I am so excited that my mom brought her up for the day. Can't wait to spend tomorrow as a family for a day! So thankful for a momma that is willing to spend her weekend relieving me at the hospital at night and bringing me my baby girl! Feeling loved right now. SO GOOD to see them! And good to know that I get to sleep in a BED tonight too! My back will be so happy!

 

As always, thank you for your prayers and good thoughts and following our journey. We love you so  much.

 

 

Day 9 Update

There really isn't much to say today...

Nat was tired.

I was tired.

We were trying to figure out the ropes in a new department.

We were meeting 10 thousand people on the new team.

Nat had PT, OT and Speech sessions today.

We just kinds WERE today.

 

Our new room is TINY. We can't even fit all of his daily living equipment in the room! (wheelchair, walker, commode, cathing supplies, and daily stuff) And it is RIGHT next to the nurses station, so it is LOUD 24/7. I did mention to the doctor team that with Nathaniel's sensory processing disorder that it is REALLY hard to calm him in this room. They checked and said another patient is scheduled to discharge tomorrow, and they could move us to that room and that it is quieter. I pray that happens. I also pray it is a window bed because window beds have more room! They also have a built in BED for momma!

 

Why would a built in bed be nice? Well let me tell you a little story...

But if you laugh at me like she did....

I might have to unfriend you!

 

Last night I slept in one of those horrible chairs that hospitals have that turn into beds. I have had one of those every night of this journey, but last nights was the worst. It was at least 6 inches shorter than I am. It folded out in such a way that if you pushed on the middle you folded in half. And it squeaked every time I breathed! It was also VERY snug in that room. My chair bed was wedged under the sink right next to Nathaniel's bed. Now this might not have been so bad if the sink wasn't automatic and the room curtain wasn't wedged between me and the sink. All of this to say...

 

You see..

if I turned over or moved the curtain moved..

then the sink turned on...

 then I BOLTED up out of bed because of the noise....

 then the bed usually folded in half on me because I bolted up so fast...

 then I cursed....

then Nathaniel woke up.

Sigh.

It was a LONG night.

 

So I am praying for a quieter room starting tomorrow. And since our God is so great and so big and so able to do anything, I am also asking Him for a window room. Because I might now survive 2-6 weeks of nights like last night.... Join me?

 

Also, I did want to let you know that we had another answer to prayer!

I asked earlier if we could pray that Lucy, the great PT that has been working with Nat, would be his PT on Rehab, and we found out today that she IS his PT! Thank you Lord. I acutaly really like all the therapist that are working with him so far, and that is kinda unusual for me!

 

We are terribly excited to see Gramie, and Audrey and Bea and the boys this weekend! It will be so good to see some friendly faces that we actually know!

 

Hoping I can be a little more ... something tomorrow, but for tonight I am going to crash!

 

Love you all!

 

 

Dat 8 Update

I was in a PLACE last night....

so when I went to write our daily update I got THIS instead.

Guess God had something else to say!

 

I happy to report that both Nathaniel and I got over 8 hours of somewhat uninterrupted sleep last night! Even though the bed was 6 inches shorter than I am, and the nurses are LOUD right outside our room, and our roommate both SNORE super loud, and Nathaniel insisted on holding my hand across the beds ALL night long, we got restful sleep! Thank you Lord!

 

So, now I can tell you about our day yesterday.

 

Nathaniel is a ROCK STAR, in case anyone was wondering.

This kid underwent 15 hours of surgery 7 days ago.

He has a 6 inch incision down his lower spine with countless stitches holding it all together, which itches like crazy since it is healing.

His legs HURT from lack of PT and use (he went from 1.5 hours minimum of PT and lots of activity daily to not being able to move at all for 4 days... you try that!)

He is scared because his body isn't working the way he remembers it working just a week ago.

And yet he smiles,

He laughs,

He works incredibly hard,

 and he walks the walk!

 

So, yesterday morning Nathaniel did a great job of STANDING (with the assistance of his walker) for his morning self care. Then he got DRESSED in real clothes! And had some breakfast. After all of this he was a bit blah. So I talked the nurse into letting me take him for a roll!

 

 

He was so happy to be out of the room, and all we did was go to the cafeteria. But look at that smile!

 

Right when we got back from our little journey PT was there to take Nathaniel for his first session of the day. That time they did lots of range of motion work to see where Nat is now, post surgery. It was a ton of stretching and lots of hard work for Nathaniel, but he did awesome, of course.

 

After PT my boy was tired. I took him back to his room in hopes of lunch, but he wasn't interested in eating anything. In the end, he needed to change clothes, which meant that I was running short on clothes for him (he doesn't have much he can wear right now) so I let him nap while I ran back to the family house to do laundry and shower.

 

 

I am feeling so BLESSED that we got into the family house. It is a very nice facility that is located very close to the hospital and is for families with children at that hospital that live far away. The family house is much less expensive than a hotel, it is really convenient and it is set up for FAMILIES. On the floor we are on there are washer and driers, a family lounge with TV, books and board games, a play room fully stocked with toys for kids and siblings, and a full kitchen in addition to showers and the rooms themselves. At the family house they serve a breakfast buffet daily for families and the house is staffed with the NICEST people! Overall I feel so blessed to have this haven to retreat to! The other super nice thing is that my car is in the locked parking lot at family house, so I feel like it is as safe as can be here an parking is FREE!

 

After I got back from laundry and shower it was time to take Nathaniel to the arcade...

 

 

Shh..... don't tell him that the arcade is actually physical therapy!!

 

He was so into the games that he didn't notice how hard he was working until we were all done and he couldn't walk back to his chair he was so tired!

 

After all this work we headed back upstairs to rest again.

This is when we got the AWESOME NEWS!!!

 

Drum roll please....

 

WE GOT INSURANCE APPROVAL!!!!

NATHANIEL HAS BEEN ACCEPTED INTO THE IN PATIENT REHAB!!!

 

This is very exciting news to us, as the services we can get at home are not nearly as comprehensive as the ones that we can get here. So this means that Nathaniel is going to get an even bigger leg up on his recovery! Praise the Lord, this is really great news for Nathaniel.

 

The downside of course, is that we are here longer.

2-6 weeks longer.

Which is 2-6 weeks longer of alone in a strange town,

2-6 weeks longer with our family split up.

2-6 weeks longer of no work for momma.

 

But as I was saying just yesterday, this journey is not about what is easy or what is convenient or what makes me comfortable. This journey is about improving the quality of Nathaniel's life. This journey is about getting the VERY BEST services and care available for Nathaniel. This journey is about sacrificing to do as the Lord would have us to do. This journey is about being obedient to Him, about being the best mom I can be and about HEALING. This journey WILL stretch us, and grow us, and CHANGE us... there is no way a journey like this can't do those things. So we embrace the journey and walk on.

 

So in the late afternoon we.....

 

 

Packed up and moved!

 

We moved up to the 4th floor now. We keep playing musical rooms, but I hope this will settle out soon. The Rehab Unit was a bit of a shock to us. It is very LOUD here, and we have a roommate now. Nathaniel was very overwhelmed with the environment here and we all had a very hard time. Hence the melt down from the post above.

 

After our time out, I was able to come back and focus in on Nathaniel. He ate a tiny bite while I was gone, and he was very tired. We got to bed early, although he did not fall asleep until late. Thankfully now we are rested and ready to attack this new day!

 

As always, thank you for your prayers and support.

We love you so much!