The last straw

Sometimes it just takes that extra little push to motivate you to do something you have been putting off for too long.  A couple of weekends ago I mentioned that I was going to put Nate's potty chairs away - but I hadn't got around to cleaning them thoroughly for storage, hadn't thought about where I would store them etc.  Needless to say, last night Nate took his potty seat downstairs to go to the bathroom and when he was done - he called me down there to wipe his tush.  Well, unfortunately for me, Mike left the wipes contained empty so I had to tell Nate to stay put while I ran upstairs to refill it.  When I opened the door to head back downstairs - to my absolute horror - there was Nate - wiping his butt on the carpet on my stairs. WHAT?????  I was speechless.  And angry.  Seriously?  I brought him upstairs for a time out - and I was the one who ended up feeling horrible because he was SO upset by my reaction.  This house will soon be potty chair free....

Finley had a great week.  She starting lifting her head up while laying on her side, sitting in her high chair, and to my dismay - she started saying her first word.  Dadadadada.  She also started saying Lalalala (but that one doesn't count).  I had to go in to the office yesterday and when I got home - Gigi told me she started saying Dada. I said, "Nah".  I truly thought perhaps she was uttering something nonsensical that sounded like Dada.  Then I heard it - plain as day.  DADADADA.  In any event - I was thrilled. June has been a month of big milestones for our princess!

Her feeding therapist came over on Tuesday and has arranged to be here weekly through the end of July when her feeding class (the therapist's) resumes.  I had asked our Early Intervention coordinator if we could go to weekly feeding therapy sessions with Finley since she had started taking baby food and so we are happy to have her once a week for now - even if its just through the end of July and then Finley has to go on a waiting list for weekly appts (our feeding therapist is popular).  The therapist, Erin, reviewed Finley's swallow study results and came up with a new plan for feeding.  Finley is a little adverse to the spoon and her swallow study showed signs that she was aspirating without swallowing - meaning her tongue wasn't making a correct motion to block the food from just sliding down her throat.  So we need to work on tongue control and strength and so we are now using a combo of a syringe and a spoon to feed her.  We are using the syringe to put the food in her cheek and so then she has to actively use her tongue to move the food out of her cheek and swallow.  I always get such a kick out of watching Finley eat because in spite of her colobomas and vision loss - she sure has no trouble seeing that spoon coming and turning her head when she doesn't like what she's having!  I took a couple of pictures in her high chair today....

Which brings me to my next announcement - yes - I had to break down and buy a new computer interface cable for my computer so I won't have to torture you with my old school pictures anymore.  I few of you (yes - you know who you are!) have been quite vocal about my need for a new cord and so its on its way.

And so today marked the end (or what seems like the end) of my 7 day headache. Its been quite the week - I even broke down and went to the doctor on day 5 (I NEVER go to the doctor - I figured while I was at it thought I made an appt for a physical too!).  The doctor prescribed some migraine medicine, which I didn't have time to fill until a day later.  I took one of those pills last night and didn't think it really helped much, but this morning's headache was pretty mild and I was able to knock it out with some Excedrin eventually.  And now its been gone for a few hours.  Good riddance!  Now, it left just in time for this cold I have now.  Yep.  Nate and I have the dreaded summer cold.  Would someone like to tell me how - after spending all of that time at the hospital with Finley - during cold and flu season - I NEVER got sick.  And now that its the middle of the summer, and she has been home for three weeks - I have a cold?  Ugh is all I can say.

Friday, June 25, 2010 | |

 

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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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