So cute!

Elyse had a good first day of school. She told me that she ate all her food, took a nap, read a story and played. :)  Sound like fun to me too!

First day of school!

Elyse -

Elyse had an emergency MRI/MRA of her head, neck and heart (just the aorta) Friday last week.  The scan was originally scheduled for Aug 17 as part of her follow up.  Some stuff came up and it was decided that it was best we get them done ASAP.   Yesterday right as i was getting to leave work, one of her doctors in Milwaukee called me and explained to me what was seen on the scans and what was discussed during their Vascular meeting...

Eyes - The report says that her right optic nerve is small. It's nothing new. It was seen in prior scans. On Friday, they mention it was called... Left optic nerve atrophy (Optic nerve atrophy causes vision to dim and reduces the field of vision. The ability to see fine detail will also be lost. Colors will seem faded. The pupil reaction to light will diminish and may eventually be lost). Elyse's eye doctor was called and she wants us to continue doing what we've been doing. She's supposed to call me something time this week, to discuss her optic nerve. Yes. I'm wondering what's going to happen to her vision, if she has Optic nerve atrophy. This is the first time i actually looked it up.

Her ARCH (heart) - On friday they mentioned Possible subclavian steel syndrome. Hm. I won't go into details, because i don't know how to explain it. The team has faxed Elyse's cardiologist the report. They want an ECHO (a ultrasound of her heart) done. As of right now, there is no restrictions on their part when it comes to cardiac.

HEAD - There was a change here. They saw an increased narrowing of the right internal carotid artery (major arteries of the head and neck that supply blood to the brain). We knew it was already narrow, but now its even more. They are concern. They want us to start giving her Aspirin everyday to help prevent a stroke.

They also did another type of study called MR perfusion. She said it measure the timing of the blood flow - to reach the brain. And because of this narrow carotid artery, the blood flowing to the right side of the brain, is much slower than the left side. The good thing is that the blood is flowing. It would be bad if nothing was. That's why they decided that they are going to rescan her in 6 months to make sure nothing else changes. They also want us to start seeing the neurologist again.

After she explained the carotid artery changes.. i asked, What does this all mean. meaning.. now what? What will happen to Elyse. She couldn't give me an answer. unfortunately, they don't know. She said, elyse might live a normal uneventful life.. or it can definitely put her at a even higher risk for stroke. We just don't know. That's why they are doing many studies with children with PHACE Syndrome.

I admit. It's scary. Very scary. I knew they were concern when they finally decided it was time for her to be on aspirin. In the years prior, she was ok. There hadn't been any changes until now. I'm very grateful that she has this team of doctors. I have confidence in them. I know my little girl is in good hands.

Thank you God! Ayden Pulmonist emailed me good news.

Blood results are in: NO Cystic Fibrosis!!!!

I will copy what she wrote instead of me trying to summarize it…

His complete blood count showed a normal white blood cell count and no anemia. His immunoglobulins (antibodies) are also within normal limits. One type of immunoglobulin (IgG) was high, but when we worry about an immunodeficiency, a higher number is more reassuring. Sometimes the IgG is high during active inflammation/infection, and he’s always sick. His IgE was low, and that’s not a bad thing – IgE is usually high in allergy and asthma. So that’s the one immunoglobulin that we don’t mind being low. The others were in the normal ranges.

Ayden's CF DNA testing was negative. I spoke with our CF center director and she feels that with a negative sweat chloride test and negative CF DNA testing, we can feel comfortable that he does not have CF. There have been some rare patients who have grown Pseudomonas and have none of the mentioned medical problems (CF, PCD, immunodeficiency, lung disease). We just treat the Pseudomonas. I will continue to treat his symptoms and the bacteria from his bronchoalveolar lavage.

I feel confident that he does not have CF. His screening immunoglobulins look good. There are many other tests we could do, but I would like to see if he gets better before running up your medical bill.

Now we have an ENT for Aug 19. We still need to find out why his sleep study showed sleep apnea. His adnoids and tonsils are normal size AND doesn't snore. I read this is called Central Sleep Apnea.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004404/

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

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