Always something!

Elyse had her 6 month followup with her eye doctor.  Everything had been going great.  Since we started seeing this doctor, Elyse's vision had improved.  NOW all of a sudden, her vision changed.  In six months, the vision in her right eye has gotten very bad.  So bad, that she couldn't distinguish the picture at all.  The doctor is very concern.  Her first thought was that it was neurological, but then she ruled that out when she tested her vision using colors.  She said that if it was neurological, Elyse wouldn't have been able to see the colors.  Next step will be eye patching the left eye everyday for one hour AND dilate her left pupil once a week.  We will do this for 6 weeks.  If there are no improvements, then she will prescribe glasses and she is letting Milwaukee know her concerns too.  

Elyse is also due for a head & chest MRI.  We are waiting for it to be scheduled.  Her cardiologist is letting us get the heart MRI in Milwaukee along with the head.  For three years, he kept saying he was going to order the heart MRI.  So yes.  i'm anxious to see the results.  Praying that everything is growing properly AND we are praying for no changes in her head too.


NOW... AYDEN!!!!

Baby Ayden is now 10 months old.  Unfortunately he has been sick a lot.  Milk protein allergy, reflux, RSV, chronic coughing and wheezing... BUT now we are waiting for him to get diagnosed with Cystic Fibrosis.  :(  Everything is pointing to that direction.   He's had the sweat test, sleep studies, bronchoscopy and chest CT.  He passed the newborn screening for it and the sweat test BUT we are learning that Hispanics carry different genes that mutate.  On Wednesday, his pulmo doctor ordered blood work to check his DNA and his immune.  When he did the scope back in May, one of the cultures grew a bug called Pseudomonas aeruginosa (which is a very common bacteria people with Cystic Fibrosis get).  As of right now, she's treating him for that.  She prescribed him a strong and expensive antibiotic in a neutralizer form that has to be given 2 twice a day, for 30 days.  We also have to do CPT chest physiotherapy (basically we have to hit his chest above his lungs to help him breakup the mucus).  I didn't realize how exhausting that was going to be.  it's 30 min the morning and 30 min before bed.  it's tiring on us because we have to keep hitting certain areas for so many minutes and switch him position (3 total - 10 min each).

His doctor said that it's still possible that he may not have it.  We are keeping our fingers cross that he doesn't.  We're hoping to get the blood results in two weeks.   If he does have it, then she will have us see the Cystic Fibrosis team in Milwaukee.

We'll see.  so far, i haven't freak out yet. :)  After everything we dealt with Elyse, I feel i'm handling this ok.  I haven't gone all crazy and research anything yet.  I'm just waiting.  

So keep my little ones in your prayers!

 

:) Ayden was a little distracted