Drowning in Boogers

Its official.  Both of the kiddos have colds.  Well, Finley has had one for a while, hers has just gone boogery.  Which honestly doesn't usually happen with her - she normally just has a lot of coughing and congestion and it takes her longer to get over a cold because she has trouble effectively clearing her throat because of the airway issue she has.  Her nose however, has been running like a faucet and any attempts to suction - either with the bulb syringe or the machine - has been met with fierce competition.  My girl surely knows how to tell you when she doesn't like something and her techniques are VERY effective in not allowing me to get the job done.  To be honest - its frustrating - but I love it - all at the same time.  I love seeing the fight she has in her!

Nate on the other hand - he's funny because this is the first time he has been very vocal about his stuffy nose. He's even gone so far as to hit his nose over and over and say, "I don't want this stuffy nose!"  As though if he were given another option, he would like to trade it in thankyouverymuch.  And I have been battling the bug myself - feeling several times now that I have been coming down with it - but then hitting the zinc melts like its my job and that seems to hold it off for a while.  Until the scratchiness in my throat comes back...then its back to the zinc melts.

Last week we visited the pumpkin patch and much to our surprise, Nate was very much in to having his picture taken!  He's very hot and cold with the camera these days but it seemed like even when I didn't have the camera ready to take his picture - he had a big smile on his face and he was saying "Cheese" trying carefully not to move his mouth while he said it and ruin his smile!




The pumpkin patch was full of beautiful pumpkins and was a ton of fun!  Nate chose a red (yes red) pumpkin whose skin was tough and mottled with masses of bumps all over it.  We attempted to carve it last night - but said skin was a little too tough for mommy to get the carver in to - daddy is going to again tonight (because of course Mike doesn't want to have to BUY Nate a new pumpkin!)  Finley's pumpkin turned out cute.  A few more finishing touches are needed and then I will post pics.  In the meantime, I am going to try my hand at toasting pumpkin seeds for the first time because Nate SWEARS he loves them - even though he has never had them!


This was our attempt at a family picture - this is the best we could do.


I have to say, I am already getting in to the Christmas spirit too!  That's right.  I can't wait to put up the tree.  I've already purchased my first Christmas present.  AND I've even purchased my sister's birthday gift (her birthday is January 4th).  I don't know if its the fact that things just seem a lot more holiday like this year since Finley's health seems to have stabilized (at least for now) and we've got that "normal" feeling back at the Roth household.  For someone who loves the holidays, it was really hard to enjoy them last year because it seemed like we were constantly on edge with Finley's health. Never knowing when the next ER visit or hospitalization would occur.  We spent the holidays at home and now with our extended families because we just couldn't risk having Finley get sick - and have that potentially result in a hospitalization.  This year, I really look forward to being with the ones with love and enjoying every moment of the season!

The aftermath of the bath tub crayons...I knew I had hidden these away for a reason.  Clearly I didn't hide them well enough!


Finley trying to sit in Nate's little chair.

Finley LOVES this blanket.  She puts her fingers through the holes and gets herself all wrapped up.

Nate and Finley acting silly.

Finley modeling her new winter coat.  I got her a furry one because I knew she'd love  the texture.


This last picture, this is a picture of what happens when mommy leaves daddy in charge of breakfast.  In fact, Nate is sitting here as I type saying, "see how messy I was?  That was a bad idea for daddy".   Yes Nate, you're right.  That was a bad idea.  You see, for a long time, Nate asked me to make him sprinkle pancakes every morning.  They are simply regular pancakes with sprinkles in the batter.  Well Nate wanted some yesterday as I was walking out to go to my Weight Watchers meeting.  He was upset when I told him I couldn't make them until I got back - and I suggested, half-heartedly, that his daddy could make them.  Well, this is what I came home to.  Nate told me that daddy made him "sprinkle waffles".  Which consisted of two frozen waffles and a bowl of BLACK sprinkles that ere sitting on my counter top - which were going to be used for the Halloween cupcakes we were making yesterday.  Never mind that sprinkle pancakes are NOT made with BLACK sprinkles, nor do I consider sprinkles to be a good source of nutrition for my children - but Nate knows that when I leave, its always a bit of a crap shoot as to what daddy will fix him to eat.  Needless to say, when we did make the cupcakes yesterday, Nate told me he didn't want any sprinkles on his - that he'd had enough!

Anyway - I was down another 1.2 lbs this week - 4.4 lbs in total.  For two weeks in - I will take it!  Oh, and my thyroid test came back normal.

0 comments:

Powered by Blogger.

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.

Followers

  

Get a playlist! Standalone player Get Ringtones