~Crazy For Natalie~
Finding a CURE for Cystic Fibrosis

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Admission Day

Posted by Jen on September 28, 2012 at 11:45 AM Comments comments (0)

It is that time of the year again.... Today is the day we are going to be admitted to Lurie's Children's Hospital. We tried the new meds we talked about at our Cf appointment, and they did not help. Natalie's teacher mentioned that her cough has become worse while she is at school, so we have no other choise but to go in for a CF tune-up. Today we will have a Picc line put in her arm, a PFT and a chest x-ray.

As we expected, Natalie was a CHAMP when they placed her Picc line. I was told that she watched them insert the line and didn't take her eyes away from the action. She loves to see whatthey are doing to her. I on the otherhand would look far away from a long line being inserted into my vein!

She also did great on her PFT- 113%

And her chest xray should a little bit of mucus pockets, but overall is looked good.

She started 2 different IV meds right away. She will receive 1 every 8 hrs, this one is quick, only a 5 minute dose. The other medicine will be given once a day and it lasts an hr.

She loved the toy her bother and sister gave her! She named him Valentine.

And she also enjoyed the Barbie puppy slide she received from Grandma and Grandpa Smith. It provided entertainment while mom got her paperwork situated and talked to all the doctors.

Grandma and Grandpa Martinez came for a visit that evening and filled her Leapster Explorer with hours of games, music, books and videos.

 

Last minute PFT!

Posted by Jen on August 27, 2012 at 10:20 PM Comments comments (0)

Today I spoke with Natalie's nurse. Her cough did not go away with the steroids, so we do not think she has asthma. Since she has been on 2 different antibiotics we are getting low on our options. They have clinic tomorrow so they asked if Natalie can come in tomorrow to take a PFT (pulmonary function test) to check to see if her levels dropped. And then we would take a throat culture to make sure nothing new is growing to make her cough. If her PFT is lower then they want to admit her to the hospital. I told them I do not think we are at the point of a hospital stay, but it would be nice to know how her lungs are doing. So fingers crossed for a good PFT % tomorrow afternoon. She normally gets between a 112%-120%.

Checking for Asthma

Posted by Jen on August 21, 2012 at 4:40 PM Comments comments (0)

Today I spoke with Natalie's nurse Stacy. I informed her that Natalie was still coughing after 2 different antibiotics. She heard Natalie cough while we were on the phone and she wants to see if Natalie has asthma on top of CF. ( this wouldn't be surprising to us since Natalie seems to have everything possible, i.e. Gilbert's disease, glasses, had a kidney stone, nasal polyps, etc.)

So we decided to give Natalie another 5 day dose of steroids to see if that helps her cough. Stacy said if her cough improved then we have to increase her singulair and advair doses to treat asthma, and if it doesn't help, well then we need to discuss the other options. At this point I think they are hoping it is asthma, because if its not, then I am not sure what options we have left other than the hospital. So we will wait 5 days to see how she reacts to the steroids and then I will call Stacy on Monday to go over the results. I guess fingets crossed that she's asthmatic?!?!?

And the cough continues

Posted by Jen on August 10, 2012 at 5:15 PM Comments comments (0)

Well Natalie has been off an antibiotic for a week now and she is still continuing to cough so now we are going to try bactrum to see if this helps. I called to get her an appt for with the allergist and they didn't have an opening for a new patient until October 29th!! That is not going to help us with this cough since that is 2 1/2 months away.

ENT is excited to see us

Posted by Jen on July 26, 2012 at 5:05 PM Comments comments (0)

So today we met with our ENT, Dr Schroeder. He walks in telling me he is so excited to see us. Really do you ever want to hear your doctor say that?!? He said he was just at a conference and thought about Natalie during a presentation and couldn't wait to get back and see her. They have a new medicine for children that he wants to try on Natalie to help prevent her polyps from growing back so fast. We think this is the same medicine her uncle Vinny has been talking about. SO we will do a nasal steriod to see if this helps shrink the polyps and keep them away for awhile! Fingers crossed. The ENT also doesn't think her nose is the reason for her cough so we are now going to set up an appt to meet an allergist.

July why must you always bring a cough

Posted by Jen on July 19, 2012 at 5:05 PM Comments comments (0)

It's that time of year again when Natalie gets a cough. I noticed this year that we have a pattern with Natalie. This is the 3rd July that Natalie has started a cough. I spoke with her nurse and she started her on some new meds since the other one didn't work, but we want to see what the ENT says next week. We are starting to wonder if Natalie has seasonal allergies that make her cough every year. So with that being said we might start to test her for allergies.

Thank You St. Daniel the Prophet

Posted by Jen on May 16, 2012 at 11:30 PM Comments comments (0)

Thank you to everyone at St. Daniel the Prophet School for hosting a fundraiser that raised $3,113 for team "Crazy for Natalie" We had a dress down day and also sold ice cream as a special treat for their lunch!

Natalie is a Hero at Children's

Posted by Jen on March 1, 2012 at 10:35 PM Comments comments (0)

~Please click this link to read about Natalie as one of Children Memorial's Heroes

http://www.childrensmemorial.org/updates/2012/March.html?utm_campaign=Heroes_Update&utm_source=2012_03&utm_medium=Email

 

 

First CF appointment for 2012

Posted by Jen on January 11, 2012 at 12:55 AM Comments comments (0)

Today was Natalie's first CF appointment since October. She had her PFT and she is at 107%!!!!! So excited to see she improved. She really loves these tests because it pushes her and she is VERY competitve. She is still coughing. (it never went away, even after the surgery.) But we think since she still is producing boogers, that might be part of the reason for her cough. We did a throat culture to see if she tested positive for pseudomonas or if it went away. We also were told we don't have to go back for 3 months. A typical CF patient goes every 3 months to the CF doctors. Natalie has always been every 2months. This is the second time in 5 years we were told this, so needless to say I was thrilled!!!! She is continuing to put weight on and grow in height. Her BMI is 67% so she is doing great!!! Now we just need to find a way to stop this random, annoying dry cough!!

CF Foundations Great Stride Team of the year for 2011

Posted by Jen on January 10, 2012 at 1:00 AM Comments comments (0)

Tonight, Joe and I were honored to receive an award from the CFF-greater chicago, as being the Great Strides Team for 2011. It was awesome to be recognized for our constant hard work and dedication for the CFF. I will not stop until a cure is found. We head from Dr Jain and it was great hearing about the promising drugs in the pipeline for CF. After hearing all of the info I know we will see a cure sooner than later for Natalie. Thank you to everyone who helps make us a successul team. Go team CRAZY FOR NATALIE!!!!

Polar Bear Plunge

Posted by Jen on January 1, 2012 at 10:00 AM Comments comments (0)

Today Natalie great aunt Kathy, jumped in to Lake Michigan to raise money and awareness for CFF and Crazy for Natalie. She braved the winds and the cold for a wonderful cause. Thank you for your constant support!! Check out this article to read about her plunge. http://chicago.cbslocal.com/2012/01/02/dozens-take-polar-plunge-for-charity/

 

Booger picker

Posted by Jen on December 30, 2011 at 12:55 AM Comments comments (0)

The ENT had a device he used on Natalie today that he called his booger picker. It was a pair of very long, skinny scissors that he used to clean out Natalie's nose. It was amazing to see how much was stuck up there, considering we clean her nose with the flush 2 times a day. I was also amazed at the fact that her right sinus was already blocked and it has only been 13 days. We need to go back in 3 weeks, so he can pick again and will keep doing this until he looks in there and she is booger free. We also found out that she grew pseudomonas in her nose. Orignally they thought it was a fungus, but it wasn't.

She's recovering well

Posted by Jen on December 17, 2011 at 12:50 AM Comments comments (0)

Natalie had her sinus surgery today. And it went well. it was about 2 1/2 hrs long. It did last longer than he thought. He told us it was a success and it was something that had to be done. He said Natalie's nose was nasty and full of mucus thicker than peanut butter. He also said she had polyps that had to be removed along with her adenoids. He said it took longer because he had to drain more mucus than he thought. Now we are at home and relaxing. Keeping her on the couch watching t.v. and we will start our nasal sprays. She goes back after Christmas and will continue to go back every 2-3 weeks until her nose is clear of gook. We will be doing a nasal fluch 2 times a day everyday to keep it cleam, along with a dailt nasal spray. So far Natalie has not complained about a thing. She is one STRONG girl!!!!!

Sinus surgery here we come!

Posted by Jen on November 18, 2011 at 12:45 AM Comments comments (0)

We met with our ENT today and I was a little shocked when he said that Natalie needed surgery to fix her problem. She has never complained about sinus pain, so I just thought there was another treatment. But he said given the amount of antibiotics she has been on this past year and for how bad her sinuses are he needs to do an endoscopic sinus surgery to open up her  2 lower sinuses on both side of her nose. We are scheduled for December 16th. Fingers crossed it goes well!

She's a Hot Mess

Posted by Jen on November 16, 2011 at 12:45 AM Comments comments (0)

Well Natalie's nurse called and said Natalie's sinuses are horrible. They are blocked in a few spots. We will be seeing the ENT on Thursday to see what he says we need to do to help her. Let's see what he will say. For now she is starting 2 antibiotics to try to kill the bacteria in her sinuses.

Time for another throat culture.

Posted by Jen on November 12, 2011 at 12:40 AM Comments comments (0)

Well Natalie's cough has never gone away. So now we are going for another throat culture and then we are trying the hypertonic saline in the nebulizer to see if that is a treatment we need to start everyday with Natalie. They start this at age 6, but think she might need it now. Off to the doctor we go.

 

 

Well we are back now. Natalie was able to cough something up for them so now we will wait and see if something grows. We did try the saline and Natalie didn't react very well to it this time. So we will not be starting saline treatments at home, just yet. We are going for a sinus CT scan on Monday to see if her sinuses are causing part of the problem because her lung function is in the upper 90's still which is healthy.

Santa Lucia knows how to party!

Posted by Jen on November 1, 2011 at 11:00 AM Comments comments (0)

A great friend, Steph Rodriguez, of ours hald a fundraiser at Santa Lucia, where she teaches. She put together a dance for the school and served pizza and sold t-shirts. All profits went to our team. And after all her hard worked she earned over $1200 for team Crazy for Natalie!! Thank you so much for putting this dance together. Natalie and Ryan enjoyed themselves with your school.

Keeping the pic line in for 1 more week

Posted by Jen on October 27, 2011 at 1:35 AM Comments comments (0)

Well 2 days after being released from the hospital, Natalie caught a nasty wet cough. They need to keep her on the IV meds for 1 more week to help keep her healthy.  her cough right now is worse then the one she went in to the hospital with. GRRRRR!!!! This means she caught a virus and we know this since she is on some strong meds and it should keep her safe from bacteria.

We get to go HOME today!!!

Posted by Jen on October 19, 2011 at 1:30 AM Comments comments (0)

Well we accomplished a lot yesterday. Natalie had her PFT and it is 104% which is amazing. That means that she has a lung function better than an average girl her age. Her culture isn't growing anything abnormal. The ENT came and saw some small polyps, but nothing to be concerned about yet. She will go home on IV meds for 8 more days.

One more Day

Posted by Jen on October 18, 2011 at 1:30 AM Comments comments (0)

We were hoping to have Natalie released today, but they want to run more tests to make sure we know the cause of her cough and she won't end up here again, sometime soon. She will see the ENT to look for polyps, A PFT (pulmonary function test) to make sure he function is improving, We need the throat culture results to come back to see what is growing and then we need to make sure she eats well before we leave.


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