We are Alive and Well!

Oh man, I haven’t been on here in so long!!!  We’ve been so busy living our lives, time just got away from me.  Life has been full of lots of good things, but some days it feels like we are constantly on the move.  

I know I shared before that I’ve had some of my own health issues.  Because of that, I’ve had to add specialists and appointments for myself.  It’s not my favorite thing, I won’t lie.  Genetics, Endocrynologists, cardiology,  GI, neurology, my naturopathic doctor, and my mold specialist.  I’ve had a lot of testing too.  I’ve gotten some official diagnoses myself, but no real answers.  It’s a frustrating process, but I’m trying to focus on living life to the fullest and finding joy throughout it all.  Right now they have me on the carnivore diet.  The hope is that giving my gut a break will give it time to repair, and in return, will help me keep my SIBO from reoccurring.  We still haven’t been able to figure out why it won’t stay away.  The current guess is because my IgG count is low in a few areas.  The next specialist I’ll need to see is an immunologist.  

The kids are doing well and keeping busy.  We are officially back in co-op and are still homeschooling.  Being original homeschoolers throughout the whole pandemic was such a blessing. We were able to keep the kid’s lives pretty “normal” throughout everything, and I’m so thankful for that.  After some time off when everything was closed down, Conner has been back in parkour and is loving being a crazy boy and jumping off things. The girls are back in dance and have a performance coming up in December.  They are in three dances and are so proud and excited.  

Madi tuned 13 on the 11th, so we officially have only teens in the house.  It’s so crazy to think about how grown up they all are now.  Kyla, our “year bonus kid” had a baby last fall, though, so it’s been really fun having a baby around again.  Gracie was diagnosed with NEHI, which is an interstitial lung disease.  Kyla is the best momma though and makes sure she always gets the best care.  She’s growing and thriving and is such a happy and fun baby. We see Kyla and Gracie multiple times a week and love it.  

The girls are doing great in therapy and have made big strides. We were finally able to find an in-home physical therapist for the girls, which has been awesome.  Ramya has new AFOs on the way, Madi has a new wheelchair on the way, and Deena’s been doing great with walking with just one arm crutch and SMOs.  They never cease to amaze me.

I’ll post some recent photos of the kids and our recent vacation to California.  You won’t even believe how big they are getting.  They are such great kids and make life so fun.

So Frusted Today!!! Canceled MRI....

Well, today did not go like I planned!

At 4:25 today I got a call from Banner Cardon Hospital.  They were not able to get prior authorization from Madi's secondary insurance APIPA/CRS for tomorrow's MRI.  After doing some research I discovered that it's because CRS (the medical clinic Madi goes to for her appointments), who actually are the ones who put in for the MRI, put Madi's diagnosis as hydrocephalus.  APIPA/CRS wouldn't authorize it because her diagnosis was listed as hydrocephalus.  While Madi does, of course, have hydrocephalus, her main diagnoses are spina bifida (which IS what is covered by APIPA/CRS), Chiari II malformation, hydrocephalus, and epilepsy.  They do not see patients at CRS based on the diagnosis of hydrocephalus alone, nor does the insurance plan cover kids based on hydrocephalus alone.  Of course, they waited until most offices were already closed to call me, so now I can't get it figured out today.  I was able to get ahold of Dr. Moss's nurse, who said she would make some phone calls and get back to me, but at this point, it's 6:00 and I still haven't heard back, so I am guessing she couldn't get ahold of anyone and went home.  Though I know there must be a reason we are not going in tomorrow, and I trust in God's plan, I am just feeling frustrated with all of the fighting and miscommunication.  There is always a phone call to make, an office to talk to, something to fight for.  I am also dealing with trying to get Ramya her next Lupron Depot Pediatric shot (another long story) and am trying to fight to get Madi's Rifton Mobile Stander approved by insurance (another long story again), as she really needs a size medium.  I love my kids, and I will continue to fight so they can get what they need, but sometimes, it just makes me tired.  I also do a lot of prep work for appointments and scans, coordinating child care, shopping so I can plan diet-specific meals while I am away, preparing for the worst-case-scenarios just in case, cleaning the house so grandparents can come watch the kids, and all of that fun stuff.  I am so thankful for the energy and drive that God gives me, because that is what keeps me running this race!

I'll update everyone once we get another date set.  Thank you for keeping Madi and our family in your prayers, and please keep it up!

But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.

- Isaiah 40:31

 

And we have... puberty

We went in to the endocrinologist to get the test results from Ramya's outpatient procedure a few weeks back.  Turns out Ramya is in full blown puberty.  Sigh.  It's hard to look at a sweet little girl who is 6, but mentally about half of that, and think about puberty.  It's just not... natural.  The doctor want us to get Ramya an MRI to make sure she doesn't have any cysts or masts that could be triggering it.  Most likely is from her hydrocephalus, but they don't want to just assume it is miss something, so they want to check and make sure.  I know that Dr. Moss, our neurosurgeon, wanted to check her for tethering in about 6 more months, so I'm going to see if we can go ahead and just check both things at once, since I'd hate to sedate her twice. 

The doctor wants to start her on a low, steady dose of hormones to level out her hormone spikes and gave us a few options.  We are looking in to those now and trying to figure out what is best for her.  If anyone has any advice there, please let me know!

Though It's hard to think of Ramya going through puberty so early, I'm actually quite relieved to know why she's developing so that now we are able to form a game plan on how to stop it.  I was more worried that her tests would come back fine and we would have no idea what was causing it.  Now that we know what it is, we know how to handle it, and that is awesome! 

In other news.....  we have been homeschooling now for almost 3 weeks.  I was feeling discouraged because Ramya and I will spend an entire week on one letter/letter sound.  We will write it on the whiteboard, play starfall games about the letter, do handwriting games that tell the letter word and sound, practice it multiple times, read alphabet books, write it in salt, write it in sand, form it out of manipulatives, make it out of play dough, cut pictures out of magazines that start with the same sound, etc.... and when Friday comes, or the week has passed, and I show her the letter again and ask her what it is, she will often say, "I don't know."  I was encouraged, though, when I saw her write the letter "A" on our whiteboard all by herself AND tell Madi it was the letter A.  Go Ramya!!  God knew just the enocuragement that I needed and I'm very proud of her!

Today we had ice cream... YUM!!  Ice cream makes everything better!

 

Stinky Seizure and Summer Fun

This morning did not quite turn out how I anticipated.  At about 3:35 a.m. Madi woke me up by throwing up.  Thank God she was sleeping next to me, or I may not have heard her!  I brought her in the kitchen and the gagging/throwing up wasn't stopping.  I also noticed she was staring off to the right.  Crud.  It was a seizure.  I held her and gave her a dosage of her rescue med (at the new increased dosage) and it didn't stop.  She then moved in to repetitive convulsions in her lower body.  I then gave her a second dosage and the convulsions finally started tapering off and she fell asleep.  I woke her up about 45 minutes later to check on her (per what the doctor told me when I called to ask if we should go in) and she was able to tell me her name and the such.  We moved back to bed and I had her sleep on my chest.  Of course I didn't fall back to sleep too well because I was worried,  but she slept and that is what matters.  When she woke up she was a bit dizzy seeming, shaky, and threw up not too long after being awake, so I thought she may have the flu or something, but after eating she slowly returned to her normal spunky self.  I think maybe all the medication on an empty stomach may have caused the shaking/dizziness/throwing up this morning.  We went to the doctor this afternoon to have her checked out and also to have him look at her right leg, which has seemed to retain some fluids and has been slightly puffy since earlier in the week.  He said to keep her out of her HKFOs and put some heat on it and see what happens.  She has grown, again, and her HKFOs aren't fitting her right, again.  I've noticed her right leg especially popping out.  I think the pressure and reduction in circulation because of how they are fitting is causing some swelling and water retention. Thankfully we have an appointment to get them fixed on Wednesday!   He also checked her urine.  The initial tests didn't show anything too concerning, but they are culturing it.  We are also working on scheduling a head and full spine x-ray to make sure everything looks good there.  I plan to go to bed early tonight and try to get some sleep.  Please pray for no seizures for Madi!  We have a follow up with her neurologist coming up and I have lots of questions for him ;).  I'm also concerned about the fact that she had never seized, ever, until 4 days after having the MMR vaccine.  On the CDC website, ongoing seizures is listed as a rare side effect of the MMR vaccine.  We had gotten the vaccine in hopes of all going to India together, but because of the onset of seizures, that wasn't possible. 

On a positive note, we have been having a blast outside.  The pool is still a little cold, but it doesn't slow the kiddos down at all!  We slightly heat the spa so it's a comfortable temperature, and that helps.  Here are some photos of our pool fun...

Ready for a dip!

 

Fun in the sun

 

Cooling down

 

Our new floaty from Costco... it has a little propeller to push the kiddos gently around the pool and they love it!

 

 

In other news, we have something very big weighing on our hearts.  We aren't ready to share the details yet, but please keep us in your prayers as we make some big decisions.  

 

In honor of spina bifida awareness month....

They said they saw the 'lemon sign'.

They said she had brain abnormalities.

They said there was fluid on the brain.
They said she had a neural tube defect.

They said she would need many, many surgeries.

They said she might struggle cognitively.

They said she would not walk.

They said we had a "choice".

But they forgot a few things.....

 She would be a fighter.

She would be beautiful.

She would be determined.

Her smile would make everything ok.

She would have an amazing sense of humor.

She would be strong.

She would find a way.

Nothing would slow her down.

She would be smart.

She would be full of life.

She would be full of love.

She would be our super hero.

She would be a blessing from God.

She would be perfect.

Choose life.





"Each child is sent into this world by God with a "Unique Message" to deliver, a new personal act of love to bestow".
- John Powell, S.J