AND SCENE!

What a day….

Ok, now that Thursday is ending I can use actual terms about what was going on.  Gracie was at her well child visit and I was told to “toss the helmet” because it was totally unnecessary. Great news!  Then the big slap:  The Dr. looked at her cranial measurements and was concerned because she was measuring off the charts, and there was quite a big jump in percentage from her 4 month visit.  Because of this, she was concerned that Gracie might have a condition called Hydrocephalus.  That is a condition where there is too much fluid between the brain and the skull, and a condition that requires brain surgery and a shunt placement.  To say I panicked is an understatement.  To make things worse, this was Monday, and the ultrasound was scheduled for Thursday.  Four of the LONGEST days of my life!  I was scared of putting on hats and headbands, I was terrified she would tip over on the floor while playing, I was angry she had to wear those awful helmets for no reason which could have potentially put pressure on her little head that might be filled with fluid.  I. was. a. mess. Four day long anxiety attack.

Four of the longest days of my life later:

Thursday:

Gracie had her cranial ultra sound (She needed to be admitted into the hospital for this and that sent me into an awful panic attack) and it went relatively well, aside from a screaming baby and a Mamma with a migraine.  It was literally the same machine used for my sonograms during pregnancy.  My heart used to leap when I saw that machine, but today it sank.  Once the ultra sound was over, I asked when we would hear the results, and the tech said, “Well I can just tell you here.”  This struck me as odd because I had read that techs are not allowed to diagnose or give their opinion of the diagnosis.  I was desperate though and welcomed any news.  She said “Well, it looks pretty good.”  And that was that.

Pretty good?  My husband and I discussed what that could mean the entire drive back home.  Pretty good as in “not perfect” or pretty good as in “looks great”?

Having the ultrasound done was not the relief I thought it would be.  It was a steppingstone closer to potentially starting a horrible journey that I did not want to take.

Hours passed and my anxiety was unbearable, so I called the Pediatrician’s office and asked if the Dr. would be calling me today.  AKA “Please please tell me the results ASAP!”  The woman very coldly told me “The scans are here and she will take a look, so, maybe.”  And that was the conversation.  I was even more of a mess.  “Why hasn’t she called?  Are they that bad? Is it lost? Does she have a soul??”

After being cheered on by my family members to call back and insist, (Please do not forget I avoid any and ALL conflict) I got back on the phone (4:11) and called.

Answering Machine.  Sorry.  Office closes at 4.

I died a little.  Total and complete defeat.  I can only take SO much anxiety and uncertainty in a week.  (Please note: This is also the day we found out if we bought a house, my eldest is SUPER MEGA sick, and it is my husband’s birthday.)

4:30- My phone rings.  It is the doctor.

GRACIE IS HEALTHY! THANK YOU LORD, SHE IS OK!!!

I don’t even know how to make this sentence any more beautiful than by simply stating the fact: She is HEALTHY!

No more helmet, no more PT, no more scans, no more cold metal head measuring clamps, no more specialist visits. Just my beautiful, lumpy, big headed, GORGEOUS ray of sunshine and an overwhelming amount of kisses.

My Gracie, she is healthy.

I guess this is where I end my blog.  What a journey this has been.  My blogs were more like pleas and prayers, so there is only one way to end it:

Amen.

Today.

Finally.  Thursday.

I wrote a blog back on Monday and set it to publish today.

Today is, quite possibly, among the top 3 most stressful days of my life.

Helmet is gone, yes. However, this new “possibility” is about 3 million times more terrifying, and I have had to sit and twiddle my thumbs since Monday, anticipating the outcome.

Gracie is going to be admitted into the hospital at 11:00 today, and hopefully we come home, and we come home happy and healthy.

Oh and guess what? My eldest is home with a spiking high fever. Today is also the day we find out if the offer on the house we want is accepted.  Oh, and guess what? Today is my husband’s birthday.

Today is either the calm before the storm, or the grand finale to a very long and taxing few months.

Please pray so hard and send as many positive thoughts to little Gracie as possible.

Ok, Thursday.  Let’s do this.

In All Things Give Thanks:

I love my husband more than words can describe.

Spinning

I am surrounded by angels and am overwhelmed with love

When all the world is a hopeless jumble
And the raindrops tumble all around
Heaven opens a magic lane

When all the clouds darken up the skyway
There’s a rainbow highway to be found
Leading from your window pane
To a place behind the sun, just a step beyond the rain

Third time is a charm?

A free minute to update the blog?! WHAT?!

I don’t even know where to begin, so let’s start back 4 weeks ago.

Two weeks before the second helmet was to start:  (Recap) We did full scans of Gracie’s head and measurements.  Never a good time but we got through it.  I was told to keep my existing follow-up appointment and I would receive the helmet at that appointment.  It seemed like a ways away, but I didn’t question it. (Mistake on my part.)

2 days before we hit the two week post appointment mark:  I decided to call and make sure it was ok that Gracie wasn’t going to be in for her helmet “pick-up” post the two week mark.  (Reminder:  Remember the whole 14 days and then the measurements are expired?  It is in one of my first blog posts.  Feel free to go back and read it to debrief on that procedure.  In a nutshell, measurements and scans are void after a 14 day period.)  I called the office to let them know that we were coming up on the 14 day post appointment mark, and that there was still a full week before my scheduled appointment to come in and pick up the new helmet.  The lady who answered told me it was fine, and that I need to just keep my original appointment, and come in in a week, as scheduled.  (I hope I am explaining this well enough; it is quite confusing.)  I then told her again that I was questioning the validity of the measurements if they were to maintain my appointment a week out.  (Keep in mind we are going through this process because the measurements of the original helmet was totally wrong and caused so many issues, including blisters.)The lady told me she would check with the head Opt. and call me back if I was, indeed, right.  Otherwise, once again, told me to just keep my original appointment.  (At this point I knew she was getting frustrated and annoyed with me.  Why can’t I just not care when this happens?  I care too much, and apologetically hung up.  Back bones for sale anyone?)

Day of “original appointment”- 3 weeks post scan and measurements:  I get called back to the exam room and see that there is a lap top out (the one that does the scans), and there is no helmet on the examination table.  Great.  Here’s the fun part; the proceeding conversation:

Orthotist: So…tell me again why you are here?

Me:  **Turned beat red within seconds**  I am here to get Gracie’s helmet.

Orthotist:  You realize we are more than 14 days out?

Me: Yes. I do.  I called and made sure this was ok and was told more than once to keep this appointment.

Orthotist: Nope.  That’s wrong.  We need to redo scans and measurements and reorder a whole new helmet.

Yep…you read that conversation correctly.  Helmet number THREE needed to be ordered…more scans, more measurements, more appointments, more babysitters, more tears, more headaches.

The Orthotist went ahead and did all the scans and measurements, and checked it to the measurements from 3 weeks earlier to see if maybe we could just use helmet Two.  Nope.  Gracie’s head had grown so much within that period that the helmet only had 3mm of growing space left.  FUMING MAD.  Why?  If the original was made correctly, she would probably be almost done since her head has grown so fast.  At this point she has had two major growth spurts since the PPDD.

Appointment made for the pickup of helmet THREE.  Tens days out post measurements.

Pick up day:  Got to the office, got the new helmet and was honestly thrilled.  What a difference the CORRECT measurements make!!!  This helmet was lighter, the lining was squishier and Gracie didn’t cry AT ALL with the fitting. Total appointment time: 1 hour 17 minutes.

There was one major change.  Gracie has TWO “corners” on her head now.  It used to be only one, but the original PPDD caused a second corner.  Because of this, the Orthotist told me to readjust the scheduled times to get her used to the helmet.  She told me to pay special attention to these two spots.  (the one corner is where she had her horrible blister that lasted 3.5 weeks.)

I left the office feeling confident, and in control.  First time ever.

I took that schedule into my hands, and it has been great!  I am also documenting “pink” spots, for parents who are going through this, because my biggest issues was wondering if the spots were, indeed, pink, rather than red.  Here is my best advice to you parents going through this: It is not so much the color as it is the duration.  Obviously if it is deep red, it is bad, but when it comes to the fine line of pink vs. red, pay attention to duration.  I give it 15 minutes before I document the change.

She is super sweaty again, but that is normal for the first few weeks, while her body adjusts itself to this new change.

Basic Outline of my Make-shift Schedule:

Day One: Hour on, hour off, off for naps, off for sleeping

Day Two: Same as day one

Day Three: Two hours on, one hour off, off for naps, off for sleeping

Day Four:Same as Day Three

Day Five: Three hours on, one hour off, on for naps, off for sleeping

Day Six: Four hours on, one hour off, on for naps, off for sleeping (today)

As far as PT and MT, I took a break.  That’s right, I said “I”.  Does this make me a bad mom?  I sure hope not.  It got to be just too much.  I still do her exercises three times a day, and see a gradual change.  I will start it up again soon, now that we have the new helmet.  I just needed a break.  With so much going on, besides the helmet, I just needed a break.

I guess that is the best recap that I can do in the short window of time that I have.

Overall feeling: Good. At peace.

In All things give thanks:

I am thankful for faith.  I won’t even label it “my faith” because I don’t believe it is “mine”.

I am grateful for the ability to love. I know that is cliché and lame sounding, but it’s true.  I love my husband and children endlessly.

Picture:  Here is a photo collage of the Helmet taken off on day one for those parents who are concerned or curious.

Thank you, endlessly

Just wanted to take a minute to thank every.single.one. of you that sent me the nicest messages, texts, etc.  I felt every prayer and good wish, and I feel much stronger now, to restart this process.

“Fall seven times, stand up eight.”Japanese proverb

“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.”  Isaiah 41:10

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”  Philippians 4:6-7

My thankfulness today is for those placed in my life during the good AND the bad, even if blood relations aren’t the factor.

I’m also thankful for this little gem, and the good laugh I got from it:

Che sara’, sara’…Whatever will be, will be

It has been a while…I was waiting with high hopes to deliver this news with a positive twist, but alas, “Che sara’, sara'”.

As mentioned in my previous post, I went back to the Orthotist because of irritation on the sides of Gracie’s face.  I was given mole skin, and read off measurement numbers, which meant nothing to me, but I understood that the point my Orthotist was making was that she was sure that her work was correct.  Returned home and continued with the mole skin.   Next PT appointment, more pink spots.  This is when my Physical Therapist told me that under no circumstances should this helmet be placed back on Gracie’s head.  She told me that the helmet was cast completely wrong, and that she would personally call my Orthotist and demand a recasting.

I got in the car and called my husband because I was totally lost over who to be listening to, since both had conflicting opinions.  We decided to continue with the helmet, since we had already gone back a handful of times, and each time we were reassured it was ok.

Days pass and no call from either.

Then Tuesday night happens:  I was out at Kohls with Laura, picking out her “perfect pre-k first day of school outfit”.  We get home, and my husband is sitting at the table, feeding gracie.  I got frustrated instantly, because I had already done her “hour off” around lunch time that day, because her aunt was over, and I thought she would like to hold and play with her “helmetless” for a while.  That is when my husband cut me off and said that I should look at her head.  And there it was.  A quarter sized blister…And it was a nasty one.  A few little blisters on top of one big one.  The thing that I was told would not happen, and that in the however many big number amount of years our Orthotist has been doing this, only once has there been a blister.

 

Straw that broke the camels back.  I was done.  No more helmet.  Exhausted, depressed (I don’t use that term lightly), and just sick of things happening to my baby.  That is when I decided no more helmet.  I told my husband that night that I was done.  (Felt like the boy who cried wolf by this point.)  He went on to say that the helmet was necessary because of how it was correcting her ears and jaw, and we need to think of her future, and stop surgeries that might be down the road, etc.  I had heard this speech so many times from so many people…I just wanted to sleep.

Sorry if this is patchy, but that’s how my brain is functioning at the moment.  Going on no sleep, too much stress, and a bad thyroid.  Let’s just say that my household is QUITE the party location at the moment.

Day comes for PT again, and I was told that the Orthotist should have called me, and that my Physical Therapist couldn’t get ahold of her, but left a message for the Orthotist to call her back.  I was then advised to call my Orthotist directly.  I was then told that at my next appointment, demand a recasting and new helmet, and if the Orthotist denies it, I need to call PT ASAP while I am there so that they can talk.

Side note:  If you are reading this and don’t know me, I am NOT a confident person in any aspect of life, and do NOT create confrontation.  I have a VERY VERY hard time speaking up for myself.  I tell myself I am tougher for my kids, but I am really not.  Knowing I would have to confront a person I held so much respect for, who is renown in the medical community, did not sit well with me.  So, needless to say, I did not call, and decided to wait the three days until my scheduled appointment with my Orthotist.

Today:  I think I caught up. Appointment day.

Gracie’s appointment was supposed to be to check her measurements from the helmet.  Standard every two week thing.  Instead, when I walked in, her first comment to me was “Why is she not wearing her helmet?”.  Red Flag.  She should know why if she got the message from PT, right? Wrong.  She apparently never got the message, and I got the “never let her be without the helmet for this long of a span of time.”

Instead of writing 30 pages about the visit, I will recap:

1. She went right to the phone and called PT.

2.  Came back in and said the new agreement is that I need to come once a week for measurements instead of once every two to three weeks. (Add that to the weekly agenda….)

3.  Reiterated that some kids take a few times to get their helmets pefect and that this was not out of the norm.

4.  Took measurements of her head and then did a scanning of her head.

5.  Left the room to input the data.

6.  Came back in, frustrated, didn’t make eye contact, and then this conversation:

O: What color helmet do you want?

Me: Wait what?  Is she getting a new helmet?

O: Yes.

 (Pic: Gracie fell asleep after crying through her scans.)

And that was that.  Now we wait for her new helmet to come, and it is back to day one, and having to redo the entire process, and break in the helmet again.  Remember that nightmare?  I get to rehash it.

This was all just two hours ago, and I am fighting a migraine, and typing this just to make sure I have it all written out, so I don’t have to retell this a million times.  Nothing has truly sunk in yet and I am just numb.  Tired and numb.  And feeling totally alone.

I hate that this blog just is a bunch of whining and complaining.  I want to be able to turn it around and write in a fun, happy, comical tone.  I am sick of this dark, sad tone.  I want positive changes.

In all things give thanks:

Her helmet will be pink.  No more purple.

Still Waters

Today was peaceful and totally uneventful (in regards to the PPDD).  I thank God for this.

Most bloggers would chose today as a “skip” day because nothing eventful happened, but this was a day of peace for me, and I am forever grateful.

Don’t get me wrong, life happened, but nothing involving the P.P.D.D. and no new blisters or sores.

I have been alone w the girls for almost three days, and am on the verge of passing out as I type.  There was chaos, but the core was pure peace.

Today I was truly led by Him beside still waters, and I am humbled and grateful.

In All Things Give Thanks:

I am thankful for the beautiful smiles that both of my girls have.  I am grateful for Laura’s laughter, that has a splash of “big girl” added to it now, and I am grateful for how Gracie grabs her feets and sucks on this little toes, and resembles a perfectly round beach ball.

I am grateful for quiet moments.  Few and far between, but cherished deeply.

 

 

 

Restart?

We decided to move forward with the helmet.

 

The mole skin seemed to help.  She woke up with a dark pink (I hesitate to say red) spot on her forehead.  I will add pictures to these blogs for now on, because I have noticed there are not a lot (if any) pictures of “pink spots” with helmets.   I will add them to benefit any parent in need.

 

She seemed to be ok.  She has to readjust to sleeping again.  Her first night with the helmet back on (it was off for a day while we weren’t sure to move ahead or not) was rough.  Last night was rough too.  Probably a total of two hours of sleep.  Doesn’t help that she also cut her first tooth!  (YAAY though!!)

 

Then today happened.  It seems like just when I start to accept the helmet, and Gracie feels comfortable (ish), something happens.

 

As you read, Monday we didn’t have PT because she had to go for the helmet appointment to fix the irritation issues on the sides of her face. (Which is now flaky skin)  That means, today was PT and we hadn’t been there in a week.  I took the helmet off of her when she was on the table and the Physical Therapist said she still wasn’t happy with the markings that the helmet left, and at the end of the session, we consulted the owner/head therapist, and she told me to not put the helmet back on her, and that the casting was wrong and that Gracie needs to be recast.  I told her I had been there 3 times and was reassured it was correct, but she said there was no way it was cast correctly, and that she will be calling them today to discuss this with them.  My job was to keep the helmet off.

 

Another bump…

 

Both the Orthotist and the Physical Therapist are well known and respected in the community.  I am so torn.  I don’t want to keep the helmet off and prolong this process, but I also don’t even want the helmet….Can’t this ever be easy?

 

Today Gracie is super happy and helmet-less.  I am waiting to hear back from PT or the Othotist…not even sure which one…

Recasting will take two more weeks to receive the new helmet, and then it is starting from the beginning…IF that is what is agreed on…

Honestly, I am not even let down.  I am just tired.  When I get an answer, I’ll allow myself to react, but for now, numb seems comfortable.  And lonely.  I have so many loved ones and so much support, but it still feels awful lonely.

 

In All Things Give Thanks:

1.  Gracie did AMAZING in PT today!  She did a full extension for tummy time!

2. Laura is being super cuddly, and I am soaking it in.  Love that kid to pieces.

3. I am so blessed to have such great health providers who genuinely care for Gracie and want what is best.  It is a pain when their opinions collide, but I know that they both honestly and genuinely care for Gracie.  She has a way of touching your heart and making an imprint.

 

Here’s a picture of her “pink spot” she woke up with yesterday.  Not irritated like the sides of her face were, but also a deep pink…Dare I say red?

Time to bow out gracie?

I think today was the last straw. 

 

Monday began the 23 hours on and one hour off.  I took the helmet off around 4:00 pm to give her a chance to get some fresh air, because we were at the lake for the day.

This morning, I took off her helmet to wash her face/head and to wash the helmet around 8:00.  I noticed the sides of her face, the “mutton chop” parts of the helmet, had red streaks.  I was reminded of the “pink is bad, red is good, pink begins to go away in 15 minutes”. 

9:00- Still streaks, and I noticed that her skin isn’t just streaked, it seems irritated and almost blistered.

10:00- Time to evaluate the situation.  I had an orthotist appointment at 11:30 that I was told not to go to, just call to check in, since I was there on Friday.  Because of this, last Friday I had scheduled a PT for the same time slot.  I ended up calling and cancelling the PT appointment (a fun $25 fee for cancelling last minute), and bringing Gracie in to the Orthotist. I was expecting a horrified gasp reaction, since my baby looked so sad, but instead, she just added mole skin to the sides of the helmet and sent us on our way. Before leaving she said to keep the helmet off until after Gracie’s nap, since it was irritated.

 

Here I am, 9:00pm and the helmet is not back on.  I really do not want to go forward with this process.  I am not pro using my baby who cannot voice her discomfot and pain, and using her skin as a gage.  I can’t do it.  She was so fussy last night, and I chalked it up to being a rough night with a helmet.  Instead, she wakes up with sores on her face.  What kind of mother does this make me, if I put that thing back on her and “hope for the best”?  I just can’t….This isn’t Russian Roulette, this is my baby.  I am supposed to be her advocate, not the one pushing her past her little 5 month old limits.

 

I have to review why she is in the helmet, and is it worth it.  Right now, I am just beyond exhausted and I need sleep.  Helmet stays off tonight.  Her face is still covered in welts.  When is enough enough?