"I'm allergic to BOOBS!"

And jelly.  This is what Nate told me the other day.  These funny little Nate-isms - they are part of our daily life these days.  Four is such a great age.  So was three for that matter!  And of course, I have always said I was going to be that parent who, when their child says something entirely inappropriate, I am unable to stifle my laughter.  Yeah. That's me.  So you can imagine then how many times he told me the other night that he was "allergic to boobs!" Somehow I think he will be singing a different tune when he's a little older!  His other new fascination?  His "junk".  Yep, that's what he calls it.  Courtesy of daddy.  Seems we are frequently having conversations these days about how its in appropriate to talk about his own junk in public - much less mommy's or daddy's.  Ah...little boys!


Last week's vent on this blog actually gave way to a very good week around the Roth household and served as a very important reminder for me that I need to be patient and not automatically expect the worst and hit the panic button.  I do this a lot.  I have been conditioned to think that every little cough, vomiting spell, etc. most certainly must be a sign of something bad.  But again it serves as a reminder for me of something we have said since the day Finley was born - we need to treat her like we would treat her if she didn't have CHARGE Syndrome.  And this applies to us too - not panicking at the slightest sign of something.  Lesson learned.  I will try to get better at this!

Not the greatest picture of Finley - but a good picture of her outfit!  I had to post this one for Amanda since she gave us this adorable skirt!  This was the first time Finley has ever worn denim - much less a skirt too!
Anyway - the kids both had great weeks.  For the moment, the bugs seem to have made their way out of the Roth household and we are re-reinforcing the hand washing/hand sanitizer rule - just to make sure its tops of mind for all of our visitors - we have a lot of therapists coming in and out of our house!  Speaking of which, Finley had her annual Early Intervention evaluation yesterday.  This is a time when all of her therapists gather, they write reports and comment on where Finley is delay wise and in relation to the goals we set at the last go-round.  The purpose of the meeting is to re-set goals as appropriate and evaluate the need for any new services or assistive devices - and while I know the genuine purpose of the meeting is good - as a parent - its nerve wracking.  Its nerve wracking for us to receive reports from our 7 therapists who in advance of the meeting all have to do evaluations, fill out questionnaires, etc. to determine Finley's progress.  And then that day you sit down to discuss all of these reports and as you flip through them, you see there in black and white what percent delayed Finley is in all of these different disciplines.  Here is the deal.  When it comes to Finley - a part of me likes to be blissfully ignorant.  The glass is always half full - and frankly I don't think I a doing myself a disservice by approaching things this way.  If I were to get hung up on these details - like Finley being 57% delayed in language comprehension - it might sink my boat.  I choose to live in the moment and one day at a time and I feel that as long as we endeavor to have our best day every day - we will get there.  Whether its when she's 3 or 13.  We will get there.  And so after these meetings, I review the reports once or twice more and then I tuck them away and move on.

THIS to me is progress!

This weekend in the Roth household will be focused on preparing to decorate the house for Christmas!  That's right boys and girls - I put the tree up the weekend after Thanksgiving every year because I like to enjoy it for a full month.  Last year, we got a real tree for the first year because our tree was in storage because of our construction project.  It was the first time my ENTIRE life that I had a real tree.  I HATED IT!  Sorry to all of you real tree people out there - but aside from the night we dragged that thing in to the house and set it up - that "fresh tree smell" never wafted through my house!  And although I watered that thing religiously every morning and again at night if necessary - like it was my job - that darn thing dropped needles like CRAZY to the point that as we neared Christmas - it was starting to resemble the Charlie Brown Christmas tree.  No thanks.  I will not do that again.  And while my tree is STILL in storage (that's right - construction has been done since March and we have STILL not emptied the storage facility) I am going there this weekend to drag that thing out and getting ready to decorate!  That also means the arrival of Nate's Elf on the Shelf "Inny".  Oh how I love that elf and the fear of Santa this time of the year!  I am also planning a nice crafty wreath project for the weekend if I can fit it in.  Depending on how it turns out - I may post some pics!

Finley playing in her favorite blanket - see how she puts her fingers through the weave of the blanket?  I love that!

Whoo hoo!
Hope you all have a wonderful weekend!

1 comments:

Sylvia said...

I love reading your posts. Sorry I couldn't make it this week - work got in the way. See you Tuesday!

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Finley's Medical History

Born on 8/8/2009 - Finley is taken to Children's Memorial Hospital via the transport team 12 hours after she is born.  She is having trouble breathing and is turning blue.  She is immediately admitted to the NICU.

8/9/2009 - Finley is diagnosed with Tetralogy of Fallot, a congenital heart defect and laryngomalacia, a condition that causes her to aspirate whatever she swallows in to her lungs.

8/21/2009 - Finley has open heart surgery to place a Blalock Taussig shunt to help facilitate proper blood flow.  When she is older, she will require a full repair of her heart.

9/10/2009 - Finley is released from the NICU.  Because of her laryngomalacia and reflux, she is fed 100% through a nasal gastric tube.

9/14/2009 - Finley is re-admitted to the hospital for an infection in her surgical wound.  Finley's genetic test comes back - she is diagnosed with CHARGE Syndrome.

9/15/2009 - During a CT scan to assess the infection, the doctors notice something strange on her CT.  It appears Finley has a malrotated bowel and will require surgery.

9/23/2009 - Finley is examined by the opthalmologist and she is found to have colobomas, a condition common with CHARGE Syndrome, in both eyes.  The degree of her visual impairment is unknown.

9/30/2009 - Finley has the Ladd's Procedure to correct the malrotation and also has a g-tube placed.  

10/7/2009 - Finley has a sedated ABR to check her hearing.  She has a mild hearing loss in her right ear and a moderate to severe loss in her left.  Her loss can be at least partially corrected with hearing aids.

10/8/2009 - Finley is supposed to be released from the hospital today but she has been having low blood sugars.  The endocrinology is called in to evaluate her.

10/29/2009 - Finley is finally released from the hospital with a unconfirmed diagnosis of hyperinsulinism.  Actual diagnosis requires fasting blood tests - because of her heart condition, it is not safe for her to fast.  She needs to have her blood sugar tested every three hours and we are taught how to administer an emergency glucagon injection in case her blood sugar gets to low.

11/1/2009 - Finley requires emergency injection because she cannot sustain her blood sugar.  She is taken to the local ER and transported via the transport team to Childrens Memorial.

11/10/2009 - Finley is discharged from the hospital on a 24 hour continuous feed.  We add polycose to her milk to help her keep her blood sugar at an acceptable level.

11/22/2009 - Finley is taken to the local emergency room with a bad cold - she is having trouble breathing and her oxygen saturations are low.   She is transported via the transport team up to Children's Memorial.

11/25/2009 - Finley is released from the hospital - just in time for Thanksgiving.

12/8/2009 - Finley is taken to the local emergency room for observation - she has a bad cold.

12/21/2009 - Nate is chasing the dog and the dog runs in to Finley's IV pole, knocks it down and pulls out her g-tube.  She is taken to the ER at Childrens to have it put back in.

2/10/2010 - Finley is admitted through the ER at Childrens - she has a bad cold again.  Oxygen saturations are low and breathing is labored.

2/13/2010 - Finley is released from the hospital.

4/17/2010 - Finley is taken to the ER at Childrens - she has pus draining from her belly button.  They suspect a urachal cyst - they send us home with orders to return on  Tuesday (during our scheduled visit) for an abdominal ultrasound.

4/20/2010 - Finley is admitted to Childrens for an overnight stay.  She will have a swallow study and abdominal ultrasound on Tuesday and a CT and sedated echocardiogram on Wednesday which will require anesthesia.

4/21/2010 - The anesthesiologists have trouble intubating Finley, so they call in her ENT to have a look at her.  He observes that her airway is 75% closed off - partially due to scar tissue from previous intubation and partially due to an infection.  The diagnosis is subglottic stenosis and may require her to have surgery on her airway.  She is immediately admitted to the PICU and put on a 24/7 breathing treatment and antibiotics and steroids to help reduce the inflammation.

4/26/2010 - Finley is well enough to be taken off of all oxygen.  Immunology and Infectious Disease are called in to examine Finley because the culture of her throat are growing staph and strep.  Infectious Disease is trying to figure out what could have caused her infection.  Immunology labs will be drawn to determine if Finley has an immune problem which sometime occurs with children with CHARGE.  This is the second significant infection she has had since she was born.

4/27/2010 - The lab calls to say that they mis-read Finley's airway culture.  It's not growing staph - its only growing strep.

4/28/2010 - Immunology labs are back and don't show anything significant.  Finley's lymphocyte counts are low but that isn't unusual for a child who is fighting an infection.  The doctor wants to re-examine her before her first birthday.  In the meantime she cannot have any live vaccines.

4/29/2010 - Finley is discharged from the hospital.  The ENT will do a bronchoscopy before her heart repair surgery to determine next steps on her airway issue.

5/11/2010 - Finley has open heart surgery to repair her heart.

5/17/2010 - Finley begins to show signs of infection which is later identified as a urinary tract infection.

5/25/2010 - Finley is discharged from the hospital.

5/30/2010 - Finley goes to the ER at Childrens because of fussiness, sweating, heavy breathing.  And echo later identifies that the pressure gradient around Finley's pulmonary valve is an astounding 90%.

6/1/2010 - Finley is admitted to Childrens to try a medication called Propranolol to help ease the pressure in her heart.

6/2/2010 - The Propranolol brings the pressure in Finley's heart down from 90% to 50%.  Finley has a positive test for C. difficile which will require antibiotic treatment.

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