Seriously, people?!?!?!

I will start off by saying I hope I do not offend any of you by writing this and expressing my opinion.   But that is what this blog is for.

So tonight I was excited to hear a local news station was airing a spot about the Pulse Ox bill that is trying to get passed in NC.  So I was able to see a little bit of it over dinner while trying to multi-task.  At the end I heard the news reporter say that parents would have the right to waive having the pulse ox test done on their newborn if they so chose.  I don't understand WHY anyone would waive a non-evasive test that could possibly save their child's life....whatever.   I did miss the end though where they showed a few comments sent in by viewers.  When I heard what some of the comments said, I was shocked.

Seriously?  People were sending in comments about how passing this bill/law was just another way for the government to take over?!?!  Really?!  No - that is not what this bill is about.  Parents of heart babies like us are the ones who have been pushing SO had for this bill to be passed.  Not government.  Parents who know that this could save other children from life threatening heart defects being missed and possibly saving lots of heart ache for other parents.  Parents who have been through the fear of finding out their baby had a broken heart.  Parents who have lived through seeing their infant child's chest sawed open, their heart stopped, their heart repaired, and the long scar left behind.  Parents who sat by their child's side watching that pulse ox number 24/7 to be sure it didn't drop below a safe number.

Seriously, people!?  This bill is not a push or infringement from government.

If you have questions about the pulse ox test, please ask me.  Any pregnant person needs to know this and know to ask to have this test done on their newborn between 24-48 hours after birth.  And that if the numbers aren't right, then ask for more testing.  Don't be afraid to save your child's life.   And the test doesn't hurt!  It's basically like wrapping a small piece of medical tape around your finger or toe with a red light attached.  That's it.  And I even asked how much this test might cost and it's less than $20.  Most of the time it's already included in the room charges for a newborn, so it could be FREE!!!!

Seriously, people.  Get the message. The right message.

There, I said it.

Love,
The Scott Family

PS - Please pray for Jax as he receives spinal chemo tomorrow and has his spinal fluid tested again for leukemia cells.  Also pray for Marie - one of Claire's long distance cousins who is 3 years old and battling a brain tumor.

Happy Easter 2013

Happy Easter!  Yesterday I took Claire to an Easter Egg Hunt that my parents' church was hosting.  Talk about coming full circle (well almost).  My parents used to host this egg hunt for the church at their house when we lived in King's Row meaning many, many years ago.  My Granny Rose even made my mom a bunny costume that she would wear.  Full body white fur suit that zipped up and even covered her head.  It had a tail and ears.  Then my mom would paint her entire face white with face paint and paint a bunny nose and whiskers on her face.  When we moved, the egg  hunt came along to our new house and my parents hosted it there for many years.  I was so proud when I was old enough to actually be the one hiding the eggs and not finding them.  Oh those "yummy" hard candy eggs with some sort of marshmallow inside.  Yuck!  But they were fun to hide and find!

Anyways, I took Claire to the egg hunt yesterday.  My parents no longer have it at their home so we went to the new location. Of course I was not fooled into thinking Claire would actually hunt eggs.  We were going more or less for the experience and to say we had done it.  She ran through an entire sea of eggs (before the hunt started) and never even acted like she wanted to stop and pick one up.  

Claire had a lot of fun before the hunt started.  We saw Will and his family there and Claire even ate some sidewalk chalk - see below.

Jack was there and showed off his chocolate cupcake mustache.

Claire enjoyed making 2 marks with the sidewalk chalk and then trying to dump the whole bowl out.  

When it was actually time for the egg hunt to start, Claire was ready to leave!  So she took Grandma's hand and they left.  No egg hunting for her.  She was done.  So I went back to the egg hunt and visited with some mom friends for a few minutes.  I could actually carry on a conversation without running all over the yard!

Then the Easter Bunny visited our house last night and filled Claire's basket with fun things!  The Easter Bunny left a new summer hat for the pool, a princess wand, a Chica from the Sprout Sunny Side Up Show, a new bath sponge, a new dinner plate, a jumping bunny, a chirping chick, some Ariel socks and some new headbands.  She was excited!

She even wore the headband!  I didn't think she would but she didn't act like it bothered her.  I am hoping she can wear these some to keep her hair out of her face.

We then went to church for Easter Sunday.  Claire wore her new dress her Granny and Aunt Amanda bought her.  She was so sweet and pretty!  She looks so grown up!

We have had a great Easter so far!  We filled our bellies at Granny and Big Daddy's for lunch then we will also be celebrating Mimi's 81st birthday tonight with more food!

Love,
The Scott Family

Eye Appointment

Yesterday, we went to Duke Eye Clinic for Claire's eye check up.  It went really well! Claire was not scared at all and actually had a good time.  She took the light up wand thing from the nurse that they use to get children's attention and kept it for a while.  I don't think they really could tell much at the appointment except for that I told them I didn't think her eyes were any worse and that she can read letters up close and far away.  So we will go back in 6 months and they will dilate her eyes and check her slight nearsightedness.  Other than that, she is good to go for now!!

For an update on Jax - his spinal fluid and blood work all came back NEGATIVE for leukemia cells!!!!  What a blessing and prayers answered!  We all know it can come back.  But if we keep the prayers coming I hope he will be blessed with miracles of a healthy body.

Love,
The Scott Family

Big Steps

One thing I have always cherished about the end of the day has been rocking Claire to sleep.  It's about the only time during the day that she sits still long enough for us to hold her for longer than 3 seconds.  It's the time of day that I get to snuggle with our baby, pray over her and with her, and just end the day right.

But a few weeks ago, she started waking up as soon as her head hit the mattress when I would lay her down.  Then it started the game of me picking her back up, rocking her back to sleep again.  And the cycle continued.  Yes, I have to admit I can't stand to make Claire cry.

So realizing that she had my number, I also realized she is now a big girl and needs to know how to comfort herself back to sleep.  Just like we did last year with the Operation Sleep (where she was waking up during the night), I knew we had to do this in a transition.  I couldn't just change all of a sudden - Claire does not do well with change.  Claire has one of those Dream Lights that will cut off after 20 minutes.  So I started with that as my timer - rock her until the light went off then lay her down.  If she woke up crying, tell her it's ok, then leave the room.

Eventually she would cry for a few minutes then soothe herself to sleep within 5 minutes.  Then we moved to rocking her for about 15 minutes then laying her down with 5 minutes left on the night light.  This worked about the same but she didn't take as long to go to sleep.

Last night I rocked her maybe 2 minutes then put her in the crib wide awake with a toy and she didn't even cry.  She just played until she went to sleep.  So tonight when she said "night night" and "crib" I put her in the crib (no rocking), turned the Dream Light on, said our goodnights, and turned the light off.  She watched me walk out of the room and didn't seem phased at all.  Just playing herself to sleep.

I have to say it's a huge step for both Claire and myself.  I was as attached to the rocking to sleep as she was.  I have to admit I really miss it.  I am having to adjust myself.  Claire's done better than I have!!!  But we now have a big girl on our hands!  :)

As for a Jax update:  He received his 2nd spinal chemo treatment today (where they inject chemo directly into his spinal fluid).  They also tested spinal fluid and found NO leukemia cells!  This is good news!  But Amber says they are running more tests today and will get results tomorrow so my understanding is maybe there still is a chance that leukemic cells are hiding in his spine.  The doctors have told them that it is now an all new ballgame with the new finding last week.  And that this will be a lot longer process than originally thought.  Please keep him in your prayers!

Love,
The Scott Family

Happy St. Patrick's Day 2013

Jax update - Leukemia in spinal fluid

I have been meaning to update since Wednesday but haven't had time.  Seems that this time when the doctors checked Jax's spinal fluid, they found leukemia cells there.  This is definitely not good.  They gave him an injection of chemo directly to his spine when they found it and he will get another injection like that to his spine this coming Wednesday.  His other chemo will last 5 days this time.

Amber says he seems to be doing ok. The leukemia in the spinal fluid is really not a good thing.  So please continue to say lots of prayers for Jaxson and his family.

Love,
The Scott Family

Pulse Oximetry Screening for Newborns Passes NC House

Update on the pulse ox bill in North Carolina.  Seems like it's moving along!!  


The Pulse Oximetry screening for newborns bill, House Bill 105, passed
the house unanimously and was sent to the Senate, where it was referred
to Senate Committee on Rules. The bill was amended on the floor of the
House to allow the NC Medical Board to change the requirement if
technology changes and the FDA approves a new method of screening for
congenital heart defects. HB 105 is available to read online at
http://www.ncleg.net/Sessions/2013/Bills/House/PDF/H105v2.pdf.


Love,
The Scott Family