Archive for the ‘Appointments’ Category

Operation: Straighten Those Legs

IMG_6822It is time to update our friends and family on a big, upcoming surgery for Chloe.

But, first…

The background:

For the past few years, Chloe has been losing the ability to walk and even to straighten her legs. Her muscles have continued to tighten and shorten to the point that now her knees are half-bent at their straightest and she is bent forward at quite an angle at her hips, too. To imitate how difficult standing and walking have become for her, put your self in a wall squat position and attempt to walk around the room while holding that position. It is quite laborious! Because of the pain and difficulty this position causes, Chloe usually chooses to move around in her wheelchair or by crawling on the floor. While these 2 modes of mobility are totally fine, she wants to stay on her feet.

There is no clear explanation for this decline in mobility. Doctors’ best explanations are quick growth and results of puberty. Puberty tends to wreak havoc on the bodies of kids with neurological issues.

For a couple of years, doctors have mentioned different procedures and surgeries that might possibly help straighten her back up. But there has never been much clear guidance for them about which one might be most successful. Remember that Chloe remains quite a mystery since she is still undiagnosed. The best doctors can do is speculate what might work since they don’t have a comparison of others with her diagnosis.

Recently, Chloe had the opportunity to be the subject of a highly specialized gait analysis. The details of getting her into that clinic and the story of her amazing performance there is the subject of a later blog post. (Someone remind me to tell the story soon if I forget!) But the results of that gait analysis led doctors to pinpoint which procedure is the most likely to help her. Doctors determined there was one surgery that might be able to keep her on her feet by straightening her legs.

The surgery:

The name of the surgery is Distal Femural Extension Osteotomy. Basically, the surgery consists of cutting a wedge out of each femur just above the knee (yes, cutting through the bones and removing a chunk out of each) and repositioning the bone at an angle, thus, “over correcting” it and making the leg straighter. The bones will be held back together with plates and screws, “deforming” the femur bone in order to have a straighter leg. It’s quite an extensive surgery to consider. The surgery is a way of bypassing the knee in order to straighten the leg. You can watch a video here. (Don’t worry — there’s no blood or anything. It’s actually a training video with a model.)

The doctor will also slightly release the tendons in her hip flexors at the same time, but that is a very minor portion of the surgery. Releasing her hip flexors will slightly straighten her body at the waist. Hopefully the muscles will continue to stretch to bring her more upright.

The doctors are opting to leave the integrity of all of the leg muscles as is; and the hope and expectation is that those muscles will all stretch with the new angle and will remain able to function fully.

The recovery:

At the time of the surgery, Chloe will be hospitalized for 3-4 nights. Then she will go home to rest and recover for 4 weeks. She can’t put any weight on her legs for those 4 weeks.

Then a month after surgery, she will be admitted back into the hospital for 4 weeks for intensive rehab therapy which will continue to strengthen and lengthen the muscles in her legs and teach her how to use her legs with their new angle. A month in the hospital is a long time, but what a great opportunity for Chloe to make progress!

The decision:

Perhaps in another blog post, I’ll tell you some of the things that seemed to us to be significant ways that God has been orchestrating this whole thing for a while. Too many coincidences to be coincidences…, you know?

We sought counsel and second opinions for several months while praying that God would guide our decision.

Doctors agreed in the end that this major surgery is the only way to keep Chloe on her feet. While the process will be painful and time-consuming (ALL-consuming!), it is really the only option available to us at this point.

Chloe has known about the possibility of this surgery from the day we learned about it. We felt that it was important for her to be a big part of the decision. She has wanted to do the surgery all along. She wants to stand, to walk, to cheer, and to dance. As the time draws near and conversations become more real, her anxieties are definitely increasing. (As are ours!) But she still says she wants to do it. The other day while we were talking about it, she typed that, yes, she still wants to do the surgery because “legs helps her to stand up.” She is the most persistent, hardest-working person I know so if anyone can do this thing well, it’s her! She’s ready to go.

The plan:

We have a small window of time in which to do this surgery. It’s now or never. It’s a one-time-chance kind of deal. There’s no guarantee of success. But it is the only and best option available. And we are grateful for the opportunity.

Surgery is scheduled for May 9 (less than 2 weeks from now!) and will happen here in Fort Worth. Chloe will stay in the hospital for most of that week with careful pain management and recovery time. Then we will go home for rest, rest, recovery, and more rest. Four weeks of lying around.

Then, she will go back into the hospital around June 6 and will most likely be in the hospital through July 4. That month will be spent doing intensive therapy several times a day and determining what braces and supports her new legs might need. This surgery is literally redesigning the motor dynamics of her body so we don’t know what all that will entail.

The only guarantee at this point is that her legs will be straighter at the end of this process. We are also hoping and praying for increased function in walking and standing. We are hoping it is much easier for her to walk. And we hope she is able to dance and to cheer on her feet to her heart’s desire.

And the usual:

Feel free to ask questions. Chloe is privileged to have so many people who love her and care about her success. The better you understand the surgery and recovery, the more specifically you can pray for her. And we definitely appreciate all your prayers!

Stay tuned….

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Reading the Letters

Chloe and Zippy recently went to the eye doctor.  Both have terrible eyesight, and both have had 3 strabismus surgeries on their eyes.  They’ve both worn glasses since before they were 1 year old.  They both have frequent eye doctor appointments.

Both kids got great reports this go-round.  Zach’s script hasn’t changed much, and he doesn’t need new glasses.  Chloe’s script hasn’t changed too terribly much either, but she did require new glasses.

I’m going to attempt to do the math here a minute:  Zach is 10.  Let’s see, he started going to the eye doctor right at 1 year old, I think.  So he’s been going to the eye doctor every 3 months for about 9 years.  Chloe is 9 1/2.  She’s been going every 3 months for a little more than 9 years since she started younger than Zach.  That’s approximately 9X3 plus 9X3 minus a few for those times it was maybe 5 months instead the scheduled 3  plus a few for those back to back follow up appointments after surgeries plus one for the Desitin-in-the-eye incident . . . .  I must have been at the eye doctor approximately 50 times with those two in the last 9 years.  Is that right?  50 doesn’t sound that drastic, actually. . . .

Anyway, the point of the math is this:  the eye doctor said to both of those kiddos this time, “See you in 12 months!”  Yippee!  I nearly hugged the man!  I gave High Fives all around, for sure!  Neither of them have to go back for 12 months!  Awesome!  I love it when a specialist says that!  (Now what will we do with all of our time?)

The story I actually wanted to share though was another sweet, on-the-ball moment with Elliot.  Elliot, as he has to do so many times, accompanied us to the eye doctor.

Chloe went first for the eye exam.  The assistant shone a light in Chloe’s eyes, did some measurements, used some little prisms, etc., and then said she was done with her.  Chloe got out of the big chair, and Zippy took her place.  As Zippy’s exam began, Elliot asked, “Does Chloe not do the letters?”

“No,” I answered without even thinking about the question.

“Why not?” Elliot wanted to know.

And then I stopped.  “Well, I don’t know.  She just never has.”

The assistant looked up from what she was doing.  “Does she know her letters?” she asked.

“Yes, she does,” Elliot and I answered together.

It was as if a light bulb had flashed in the room.  The assistant asked Chloe to come back to the chair.

I covered one of Chloe’s eyes while the assistant went across the room and pointed to a row of letters.  Since Chloe had just seen Zachary say the letters to the woman, and assuming that the lady didn’t know sign language, Chloe attempted to say the letters, too.  But none of us could understand for sure which letter she was saying.

Each time, I acknowledged her attempt at speech but also asked her to sign the letter.  And she did.

“H,” Chloe signed.

“W.”

“A.”

“E,” she continued, getting them all correct.

I couldn’t quit smiling.  And Elliot was excited, too.  The assistant was impressed.

And just like that, now Chloe does the letters at the eye doctor.

Elliot, indeed, continues to be a good advocate and thoughtful sibling for Chloe.  How long would it have taken us to finally have Chloe read the letter chart?  <sigh>

It certainly takes a village . . . .

Diagnosis: Immaturity

Zippy has a handful of diagnoses:  cerebral palsy, cocaine positive at birth, oral paralysis, asthma, anaphylactic allergy to peanuts, ADHD, anxiety disorder, adjustment disorder, mood disorder — did I leave anything out?

It’s a pretty major list.  It’s a list that fills every single day with challenges for him and for those who love him.

But his new counselor, Mr. Daniel, added a diagnosis this week:  immaturity.

Yes, I’ve used the word often for Zachary.  I know he’s immature.  I’ve known for a long time.

But Mr. Daniel thinks that his immaturity is his #1 issue causing his behaviors lately.  I was sure that Zach has been purposely misbehaving.  I was convinced that we were dealing with a great nasty heart (inner-heart) issue of defiance.  Zach’s psychiatrist even mentioned Oppositional Defiant Disorder (ODD) at his latest appointment.

But Mr. Daniel thinks that Zachary is just hugely immature.  He categorized Zach as like a 4 year old.  He behaves like a 4 year old and deals with frustrations like a 4 year old.  He thinks that Zachary isn’t disobeying on purpose.  He thinks that Zachary isn’t purposely making the same bad choices after the same bad choices after the same bad choices; but instead is acting like a 4 year old would and repeating those bad choices while expecting a different outcome.  And even repeating those same bad choices not even realizing that he just made the same bad choice an hour ago.

Mr. Daniel explained it along with the personal construct theory.  Not to get too technical here but basically that as we age and as we experience life, the way in which we react to life changes and develops.  As infants our only construct is crying — crying if we’re hungry, crying if we’re cold, crying if we’re tired, crying if we’re scared.  But as we get older, we learn other ways – other constructs – to communicate and to adapt.  Basically, Zachary is still working from a 4-year-old construct.

Mr. Daniel suggested that we re-vamp our parenting with Zachary and parent him as if he were 4 years old.  We wouldn’t expect a 4 year old to behave like a 10 year old so we can’t expect Zachary to behave like a 10 year old either.  Actually, Mr. Daniel wants us to parent Zachary as if he were FIVE years old, parenting a little above his level, thus encouraging growth into that higher level.

We are going to make a Zach Spot where he can go into his own timeout.  He can cool off, he can be alone, he can come out whenever he cools off and calms down.  Hopefully the Zach Spot is something he can grow out of the need for before too long.  Mr. Daniel suggested buying some rods or sticks from Home Depot to put in the Zach Spot so that Zach can break them when he’s angry.  A novel idea I thought.  We are also to furnish the spot with crayons and paper and some other things that he might want to use while he’s there.

We are also to create a CHAIR.  And as Daniel humorously pointed out, the chair will NOT have electricity!  Hehehehe.  The chair will be a place for a timeout, but will have a greater purpose.  The chair will be furnished with a notebook where Zach will have to write three things:  What happened?  What is the rule?  What will I do next time?  Before he can get up from the chair, I or Paul will read his answers and discuss it a little bit.  The purpose of this activity is to train his “inner parent” or his conscience to think through decisions.  Hopefully by participating in CHAIR time, his inner parent will develop and will allow him to make better choices and to think through his consequences.

<sigh>

As I already said, I’m totally on board that Zachary is super immature.  And I’m hoping that this new technique will be successful and that it will bring some peace to our household.  I’m sad that there’s not an easy, quick fix!  If we are trying to grow him up closer to his chronological age, then it sure sounds L-O-N-G to grow him from 4 years old to 10 years old!!

But we can do this.

It will be such a mind-switch from parenting a 10 year old to parenting a 4 year old.  That’s a long way to lower our expectations.  But the positive thing is, if we lower our expectations to where he is, then He. Can. Be. Successful.

Wow.  He needs to feel some success.  We need to see him experience some success.

So there ya go.  In the span of a 45 minute appointment with the counselor, we went from having kids 11, 10 and 9 to having kids 11, 9, and 4.

I guess that could explain some of the bedwetting issues, too.  Hmmmmmm.

Medicine Run

Have you ever been embarrassed by how many prescriptions you’re dropping off at the pharmacy all in one day?  Ever been embarrassed to go to the pharmacy everyday in a week?  Ever been amazed at the stash of medicines on your counter?

Yeah, me, too.

Often, actually.

But the truth is I have mostly gotten over the embarrassment of my frequent visits to the pharmacy.  In fact, my children and I love being called by name when we pull up at the drive-thru window of CVS.  “Hi, Mrs. Mastin!  Dropping off or picking up today?”  It’s like the olden days . . . living in a little town where everybody knows your name!  Now that’s service!  And it wouldn’t happen without frequent trips to the pharmacy.

It’s funny the few times I’ve shown up at the window in Paul’s car.  They come to the window and greet me as if they are greeting a stranger.  But before they finish their greeting, they realize it’s me.  “Oh, hi, Mrs. Mastin!  I didn’t recognize you in this car!”  🙂

I have learned to love the relationship I have with the pharmacists and with the techs.  They are always so nice and so glad to see me.  After all, I’ve paid to send their families on a few vacations with my family’s frequent visits to their business!  🙂

But I have to admit that yesterday I felt some embarrassment.  I had just gone through the drive-thru the day before with some usual prescriptions.  We were all stocked up and ready for a few weeks of meds.  But then yesterday, we had 5 doctor appointments.  Yes, 5.  I know it sounds crazy.  But it’s true.  Zachary had 2, Elliot had 2, and Chloe had 1.  And after a full day of doctor appointments, I showed up at the CVS drive-thru window with a stack of 9 new prescriptions.  Yikes.  That was one time I was wishing I could hide behind something and not be recognized.  9 prescriptions.

The pharmacy tech raised her eyebrows when she saw the stack of prescriptions.  I looked at her apologetically.  But she didn’t care.  At least she wasn’t going to get bored in the next hour or so!

“When do you want to pick these up, Mrs. Mastin?” was her question, accompanied by a friendly smile.

I wasn’t exactly positive if the smile was for me or if it was for the next vacation she knew she’d be going on because of my family.  But it doesn’t matter.

Either way, I think they love me!  🙂

Chloe’s Updates

How about a quick nutshell version of a Chloe update?  You game?  Oh, good.  I was hoping you would be.  🙂

We are still waiting to receive Chloe’s special needs car seat.  Medicaid has finally approved payment, and the doctor finally sent in the prescription, and someone finally drafted the letter of medical necessity.  The seat has been ordered, and we are just waiting for it to come.  Yippee!  We will be glad to have it after waiting for 4 months!  While the seat that Safe Kids gave us is a much better fit than her old seat, the fact is that it, too, is too small for Chloe.  Soon I will be posting a photo of Chloe in a seat that is actually safe for her to be in.

In the next week or so Chloe is going to be fitted for a new wheelchair.  Her old chair is so small that it keeps trying to tip backwards when she’s in it, and she drags her feet on the ground behind the foot plate.  She doesn’t use the wheelchair much, but she still needs it for riding the bus to and from school and for trips to the mall or to downtown, etc. that require a lot of walking.  Hopefully the process will move quickly, but I’m sure we’re looking at early April before she receives a new one.  It will also possibly be difficult to get Medicaid to cover the chair since they just paid for “seating” in her car seat.  Apparently Medicaid thinks a child only needs one or the other every 5 years, and we’ve only had this chair since ’08, and Medicaid just paid for a car seat.  Hmmmm.  Wish us luck on that battle.

Chloe will also start physical therapy at the clinic again next week.  She had taken a break, but the muscles in her neck are quite tight again, and her neurologist put her back in therapy.  He also scheduled more botox in her neck — the earliest they can do it is March.  Following the botox injections, she will be in intensive physical therapy to strengthen and lengthen her neck muscles.  There is a tiny tight strand of fiber in her neck that has not responded to botox, and the tightness is starting to pull her face — alter her face a bit by pulling down on her eye, nose, and mouth in that direction.  The neurologist is hoping (but not expecting) the rope of fiber to respond to botox this time, but if it doesn’t, then the plan is for the strand in her neck to be surgically lengthened.  The neuro doesn’t have a clue how it will be done or who would end up doing it (ortho?  ENT?  plastics?  general surgeon?), but he promised me he’d be talking to some docs and coming up with a plan.  Of course the easiest answer would be for the botox to be more effective this time and negate the need for surgery.  I will update you in a couple of months.

And believe it or not, that’s all I can think to update you on!

We’re just plugging away and chugging along!  🙂

Thankful

Today I am thankful that a year and a half ago when we painted the inside of the house we chose a semi-gloss finish so that it would be easier to clean.  If the walls weren’t semi-gloss today, then the three packs of chocolate pudding that exploded in the entryway would have been a much bigger mess to clean up.  As is, the globs of chocolate pudding wiped up surprisingly easily from the walls and the baseboards.  Thankful.  Yes, that’s it.

Today I’m thankful for the smile that crossed my face as I heard the strong edict come from Paul’s mouth:  “New house rule:  Never stand on a tower of pudding packs.”  Yes, I’m thankful for new house rules that I never thought I would need to have for my family.

Today I am thankful that my daughter is strong and healthy.  And that Paul and I and Zippy together are stronger.  If the three of us together were not stronger than Chloe, then we would not have successfully gotten the 4 antibiotic drops into Chloe’s right ear this morning.  Thus, her inner-ear infection would not be on the mend this morning.  Thankful.  Yes.

Yesterday I was thankful that I am not the receptionist at the pediatrician’s office.  Since I am not the receptionist, I was not the one being yelled at by a dad who had waited twenty minutes past his appointment time.  I would not have been able to avert my eyes and shield my children as the dad spoke very loudly and angrily.  But had I been the receptionist I would not have had to ride the elevator with the angry dad a little bit later (steam still blowing from the guy’s ears), and Chloe in her not-so-graceful-nor-perfectly-balanced way would not have bonked into him and sent me apologizing and begging for mercy from this large and angry man.  (But perhaps a sweet and tiny disabled child catching her balance on him was exactly what the guy needed because I watched as the large angry dad transformed into a melting marshmallow right there in the elevator as he insisted that she was just fine — a transformation to be thankful for, for sure.)

Yesterday I was thankful that my boys were cracking each other up all afternoon.  They got along beautifully and brought joy to each other, to me and to everyone who heard them.  I was thankful that I had to shhhhh! them at the doctor when they were so happy with each other instead of having to shhhhh! them for arguing or complaining about each other.  I was thankful for the blessing of my children.

And yesterday I was thankful that Zippy didn’t have math homework.  I was thrilled that his math teacher decided to give them a night off since this silly week is only 2 days long.  My heart was glad.  For the record, my heart would have been gladder than glad if his reading teacher had made the same decision and if we didn’t have to redo a math paper that Zip had scored a 20 on.  But I refuse to let those two things dampen my thankfulness for a night off of math homework.

I am truly thankful.  I am thankful for a precious family that is exactly what I need for them to be.  I am thankful for grace and forgiveness.  I am thankful for music and laughter.  I am thankful for friends who love me.  I am thankful for the roof over my head and the wheels that I drive.  I am thankful for the sunshine and for the full moon that was out during the day yesterday.  I am thankful for a God who controls it all.

I pray today that you are reminded of things to be thankful for.  Many Thanksgiving blessings to you and to yours.

Flu Shots

A family that gets their flu shots together . . . stays well together!  🙂

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I love Minute Clinic in CVS.  No appointment necessary.  You can go for a sick visit or for vaccines.  There is a nurse practitioner there to see you and prescribe medicines if needed.  And they submit the visit to your insurance.  So convenient!

We went after Elliot’s last soccer game and got our flu shots.  Hopefully we’re covered!

Got your shot yet?

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