1 month follow up with Dr. Nelson

Here we are a month post-cast removal, and things have improved significantly. He is now walking on his own without a walker.. and he's not crawling around the house anymore.
His foot is still pretty stiff and he is more comfortable turning his foot and leg out to the left to hobble on it instead of pointing it straight to "heel-toe" it....
We saw Dr. Nelson today and he is not worried about that. He thinks it will come with time. He is pleased to see it so over corrected that Josiah likes to walk with it pointing out. This is because he knows it will eventually start to turn in and then, hopefully, be right where it should be.
We discussed the right foot today, and he is thinking that it does not need to go through the TSF operation, at least not anytime soon. He is thinking that when Josiah is a teenager, he can have an operation on it if it continues to turn or he starts walking more on the outside of it like he was on the left. We've been doing physical therapy for 2 weeks, and have 2 weeks left. We could continue it, but it's expensive for us ($60/week) and Dr. Nelson said that we could just work with him at home. He said that, really, the best thing for Josiah would be to take him to the park and let him play on it. PT is all about gaining flexibility & strength, so play is the best medicine.

We'll return to see Dr. Nelson in 3 months. Prayerfully, by then, Josiah will be running.

3 weeks post-cast

It's been 3 weeks since Josiah's cast came off.
The fixator seems like a distant memory, and when I look at pictures, it's shocking all over again.

I knew his foot would be stiff, but I didn't realize just how hard it would be for him to get around.

It's going to be a long road to full recovery; I wonder how long it will be before he can walk and run freely, without thinking, as he did before... will he ever get there?

Another fixator patient I'm in contact with, who had his frame off in May, is still not back to where he was before and his mother told me she was disappointed to see how much "memory" the clubfoot had (which I interpret to mean that it's pulling in already).

Hearing that and seeing him struggle to just walk a short distance makes me worry that all this will have all been in vain, or my biggest fear, that we've made him worse.

His foot looks so much better than the right... but it's not as functional.

He's started physical therapy yesterday. It was not painful, but difficult (and he got frustrated easily). He'll go 3x a week for at least 4 weeks. That's at least 2.5 hours on Mon.,Wed. & Fri. for which I need to find a babysitter or someone to take him. I know I'll figure it out... it's just I feel like I'm imposing on other people's time... losing my own grading/prep time.

Lots to pray for.

Thank God that Josiah's personality-- his sweet, God-loving, funny, carefree attitude-- is still intact. His faith has grown through all this, and for that alone, it's been worth it. I know that God has a plan in all this, and I can't help but believe that it'll be related to Josiah's ministry as an adult.

We made it!

5 months.
22 weeks.
153 days.
June 21-November 14.

What a journey we've been on the last 5 months, (well, 6 years, really).
Though we're not done yet, we are blessed to be where we are today.

Josiah got his cast removed this morning.
Here's the last "cast shot"
He's happy that he won't have to use this Aqua Sock anymore (which is super cool by the way! You put it on, pump the air out of it, and it creates a water-tight seal enabling the cast-wearer to completely submerge the cast under water! Buy them here: http://www.ithacasports.com/wacaco1.html)

He had been getting around on the cast better and better.
I meant to post about this, but forgot.
For the first 3 weeks, he only walked using his walker. He was so stubborn! I knew he didn't need it, but it was a mental thing.
Here he is even using it on the playground!
He put it up there, climbed up, and then pushed it down the slide so it'd be waiting for him at the bottom. (I refused to help him... tough love... trying to get him to go without it).
After Dr. Nelson questioned Josiah about why he was still using the walker, Josiah decided he didn't need it after all. :) Lol...
He began to nearly run around the house without the walker, and was stoked to discover he could ride a Big Wheel at my moms. (He could have ridden his actual bike, but it was flat).


Here is Josiah with Dr. Nelson (our hero!)
He had literally just returned from Haiti (the night before). This is Dr. Nelson's blog (where he describes what he's up to over there). It is heart-warming and heart-wrenching at the same time. I can't imagine all he sees and experiences there. I wish I could help somehow. How blessed we are to be living in the states! My heart goes out to those living in such dire conditions and I thank God for Dr. Nelson, and others like him, who give of their talent, time, and resources, sacrificing their own comfort, health, and family-time to serve others so selflessly.
May God bless them abundantly!

We didn't have to wait very long to be seen today. I know better now & got the 1st appointment of the day... it just gets busier & busier there.
Josiah yelled a bit when they cut the cast off. He was really scared that it was going to hurt him, but it didn't and it was over quickly. He was not able to walk on it, so I had to carry him out of there (gonna break my back!).

Here it is in all its filthy, stinky, stiff glory:


BEFORE:

AFTER:


You can see how much the inside of the left foot has been stretched out to the left (right side of picture)... It's SO straight! If you compare the left to his right foot (left in picture) you can see the curve on the inside of the R foot. It's not severe, anymore, by any stretch of the imagination, but can see the difference between the corrected & uncorrected now.

What's "funny" to me is that when "relaxed" right now, his right foot falls in and his left foot falls out. They used to point towards each other.

The left foot is currently "over corrected," which is what we want. Clubfoot tendons want to tighten up and pull the foot back in (always)... so they over-correct to fight against that.
It won't stay that way, but the goal is to get it straight, and maintain the stretch as best we can.


Here he is in his first "normal" bath in many months (with Ava who "had" to join in)

Clean (wrinkly) feet & legs!






He is ecstatic to be done with the fixator & cast, but realizes that it's going to take time & effort to get his foot functioning again. It is super stiff and very tender.
Praise the Lord for his faithfulness to us these past 5 months, and praise God for Dr. Nelson & his team!

Next up... PHYSICAL THERAPY!

Almost done!

In 10 days Josiah will get his cast off!

He has not had to change it since it was put on 10/4/11, and has learned to walk on it using a walker. He can walk on it without the walker now, but it's not easy for him because the cast is very rounded on the bottom, not flat.

He has not had any pain, praise God.

It's been easier for us to go out as a family now.

Pumpkin Train with sister & cousin

Halloween- the whole fam

Right on time.

God is always on time.

We reported to Loma Linda at 7am on Tuesday morning without insurance approval.
We got all checked in; Josiah got in his gown; Nurses took his vitals; Anesthesia came by to consult with us; Dr. Nelson stopped by to say hello.

At 8:45am, I heard a nurse on the phone mention Navarro, and "Oh, well, they're all set to go back in a few minutes. (Pause). Oh. Ok. I'll let her know."
I was waiting for her to come over and tell me that we did not have authorization to go through with the procedure...
but she didn't!
I took some last TSF pictures...

Look at his SUPER LONG toe nail! Gross! Lol. I asked the doctors to PLEASE trim them. I even signed a hand-written consent for it! :)

Then at around 9am, Josiah was given some pre-op "silly medicine" before the anesthesia team came to take him back.
They later told me Jo informed them all that he was going to be Batman for Halloween, that his sister Ava was 2, and that his brother Jack was "this big" (showing about an inch between forefinger & thumb) :)
Every surgery they've told me that he has been very calm and brave.
(Peace of God!)

Surgery started at 9:30.
He was out by 10:30.
While we were waiting, we went downstairs to the cafeteria. While there, I got a voicemail (there's no signal upstairs). I listened to it and it was Kim, the surgery scheduler. She said that a little after 8:30am, "they received the approval directly from Health Net. Everything was good to go."
Amazing.
Though it was a big headache on Monday, I am thankful for Anna (from Health Net) and Tammi (from Loma Linda) for working diligently to get it resolved in time. (I still have to figure out my Primary Care situation, and make sure we will be able to go back to Dr. Nelson in the future, but for that day, it was all good).

After surgery, Dr. Nelson informed us that everything went great.
He casted the foot in the hyper-corrected position (stretched to the left) for good measure, and said Josiah should be able to walk around on it soon. (Can't wait!) He also told me he had already enjoyed a post-op cupcake. :D (We had brought the surgerical team cupcakes (from My Delight Cupcakery, of course).

We're due to go back on Monday morning for them to remove the cast, check the pin sites, and recast him. I'm leery of having them take it off and recast him when he might be sore still. But then again, it'd be nice to check on those pin sites.

Jo did have pain when he woke up and he was pretty grouchy. He kept asking me, angrily, why God allows pain. (Another one of those teachable moments this frame has provided. I told him, "God does not promise to keep us from difficult things, but he does promise to be there with us. He strengthens us, and comforts us. He's also teaching you about compassion through all you're going through").
But by the time we were ready to go, he was doing ok.
We left Loma Linda at 1:30.






Here is Josiah today (Thursday) with the new Lego creation he just built. (Thanks Nana!)
He has not needed any pain medication since last night when we gave him Tylenol and Advil.
Praise the Lord!

I must say, I'm in love with his new cast. It's so little! :)
He'll have it on for 6 weeks.

We are all so excited to be done with the frame!
As you can see, we've been counting down the days.
106 down, 41 to go!


We're looking at the week of Nov. 13th for cast removal.
Guess we'll need some new Thanksgiving Shoes!

We have a lot to be thankful for.

One of the people on the top of our list this year will be Dr. Nelson and his team.

Thankful we have insurance... BUT

I am SO thankful we have insurance because without it, there's no way we could have done ANYTHING with Josiah's clubfeet. From castings, to surgeries, to custom orthotics, to the TSF, all of it would have been beyond our financial means without insurance.
BUT...
What.A.Pain HMOs can be!
If you don't have an HMO, how it works is this:
You have a Primary Care Provider (PCP). This is a family doctor who you is your first stop when anything is wrong. He will treat you. If he can not, or if it becomes a "specialist's issue," then the PCP write a referral; however, before you can just make an appointment with the specialist, the insurance must first give you authorization. This takes 1 to 3 weeks. Once authorization is established and sent to the specialist, they usually call YOU to make an appointment. (It's always good to call them after a week or two to see if they've received the authorization. (Don't trust the paper work system!) Occasionally, the specialist the PCP has referred you to is not someone the Insurance wants you to see. They have preferred doctors they want you to see. Of course, sometimes they just see what's on paper, and they send you to someone who is not what you need. (This happened to me with Josiah-- sent me to an orthopedist who doesn't deal with children... and it happened with Jackson-- sent me to an audiologist who doesn't test infant's hearing). Errrrr.
Anywho, in this particular case, we were authorized to see Dr. Nelson at Loma Linda. It turned out to be a God-send.
Of course, you know the rest... Josiah had the TSF put on in June, and we've been stretching & correcting it for 100+days now.
Surgery was set for Tuesday... just 3 nights away!

BUT THEN...

We got a letter last week. Our HMO plan renews each Oct. 1st. Usually this is uneventful.
However, John's company tried to save some money and changed us from the regular HMO to "HMO Silver Network." Apparently the Silver Network further restricts the doctors we can see.
We were told that we were reassigned to a new PCP, a doctor in FOUNTAIN VALLEY! I don't even know where that is, but it's not nearby.
So besides not wanting to lose Dr. Craig, the PCP we've had since I was pregnant with Josiah, the bigger issue was that our current authorization through Dr. Craig is the one we were going into surgery with.
Now that we've been "reassigned," we need a new referral from our current PCP to an orthopedist... this new "Silver Network" may not have Dr. Nelson/Loma Linda in its "network."
And even if they did, who knows how long it would take to #1 find a new PCP (because we're not going to Fountain Valley!) #2. Establish "care" with an appointment, #3. Request the referral to Dr. Nelson, #4. Wait for authorization #5. Make a new appointment with Dr. Nelson for surgery.

I was on the phone for over an hour on Friday with Health Net trying to get this all straightened out. The good news is that Dr. Craig (our current PCP) is in the Silver Network. If they would have just "reassigned" us back to him, there'd be no problem... but apparently it's not that simple. That medical group is "at capacity" and not accepting new patients. I tried to explain, I'm NOT a new patient. We've been there 6+ years. The guy tried to call the supervisor to see if she'd override the system and reassign us. She said she couldn't. We can appeal it, but it takes 7-10 business days.
So I said, Ok, then what else can we do? He has to have surgery with THIS doctor on Tuesday. This TSF is not something just any surgeon can deal with! We NEED to get this thing off asap.

The best they could do was submit a "transitional care" request which I think will allow us to finish whatever was already authorized. It will take 1 business day to find out, which is Monday. I'm not sure if it will be enough time to get Loma Linda satisfied that we're authorized for a Tuesday surgery. I'm FERVENTLY praying that it can be squared away on Monday morning.

Sure, after 100+ days of this, you'd think another few days, even another week or two wouldn't be the end of the world... but for this 6 year old little boy who has been counting down the days to normalcy, it would be close to the end of the world. And for this weary mama, I would have to agree.

We'll deal with what comes, but we're praying that things go our way tomorrow.

Day 100!!! (Pre-Op)

We've made it 100 days with the TSF on.
It's been 14 weeks & 2 days...
Only 5 more "sleeps" until it's off.
Josiah & I start school each day with our calendar, and he gets more excited with every day that brings us closer to October. He keeps talking about all the things he's going to do once it comes off.

Two of his church friends gave him cards this week-- so sweet! They have been wonderful examples of unconditional love, acceptance, and compassion.

This fixator has been a wonderful teaching tool. It's stretched all of us as it stretched his foot!

Praise the Lord for his faithfulness in the midst of trials.

We can't wait for Tuesday!

The pre-op appointment was uneventful, though it's always nice to see Dr. Nelson and his team. His resident informed me that the scheduling dept. scheduled 20 patients for the 1pm-2pm hour. RIDICULOUS! It's out of their hands even though the doctors themselves plead for them to spread out the patients. That's 3 minutes per patient! MADNESS. It's good to know that they feel the same way and are not aloof about how inconvenient it is to spend an entire afternoon there.
We also had to go to PACE (pre- anesthesia appointment. There they have us sign all the paper work, pay our co-pay for surgery, take Jo's vitals, and go over his medical history to make sure he's capable of handling the operation. What's frustrating is that they did all this 3 months ago... nothing has changed. Can't they just ask me on the phone if anything has changed? O well... at least the day of surgery it should go smoother with all the paper work and insurance stuff out of the way.
One sad/funny thing that happened is that the nurse had to prick Jo's finger to see if he was anemic. (Last time he had to go for blood work, so they didn't do the finger prick). Josiah did know what was coming and I was talking to the nurse practitioner and didn't know the nurse was doing it right then. O. My. Gosh. You would have thought the nurse cut his finger off with the way he screamed and SOBBED. I know it hurts, but, man! I thought maybe his tolerance for pain would have increased by now... I shouldn't laugh, but it was a bit funny to me how dramatic he was over a finger prick when he has 8 pins going through his foot, shin and toe!

He was pretty mad about that.... the whole way home.

Poor guy.

We'll all be glad when this ordeal is over.

I pray we all agree it was worth it when it's all said and done.