Fries are done

Saturday, January 26, 2008

"When your family does something, they sure do it with flair!"...

... A direct quote from our pediatrician this week.

Flashback, 2 weeks: Carina has her 18 month appointment. Finally, she weighs over 20 pounds (21 to be exact) and is generally doing great. Oh, wait a minute, she has double ear infections. (The girl hadn't complained at all! I guess it was a good thing we went to the doctor.) The check up wouldn't be complete without 4 vaccines. One of these, the MMR, was one I was dreading and purposely put off until now, due to how poorly Dante reacted.

So, we go about our business for a week or so, and we think Carina is looking pretty bad with 3 falls to her face this week on concrete. We schedule an appointment to have both kids ears checked to ensure that the infections have cleared up. While we're there, we are told that their ears look beautiful! (Whew). Oh, and look! Carina has a few small red dots - textbook reaction to the MMR shot earlier. "Expect it to last about 5 days."

That night, Carina is fussy all night long, with Chris and I going in to help her back to sleep a few times. In the morning, I turn on the light...Oh My! She is covered in tons of red spots - and not small ones either! She's also running a low grade fever. So, I call the office and talk to a nurse. "No problem, this happens. She won't be itchy, it just looks bad." By the time I get home at 4:30 in the afternoon, and she has been sleeping on and off all day, I am about ready to take her to the hospital - Her whole face is swollen and she's covered in hives! I call the office again, they ask around, talk to the doctor, " It's OK. Just give her some benadryl and tylenol. This does happen, but she will be fine." I feel guilty now for not pressing the issue, but I trust them. The benadryl does NOTHING to combat how itchy she is. We are up all night long and looking pretty scary. I call the practice in the middle of the night and was called at 6:30am with a "come in at 8."

Dr. Patranella walks in the exam room and says, "Wow. The nurses said it was impressive. Boy, when your family does something, they sure do it with flair! I see a case like this maybe once every 5 years." (great.) So, she gave us a prescription for a medicine that not only stops the itching, but should help the anxiety she has from it. "The good thing about measles is that it is very predictable. She should have this for about 5 days. Rarely it could be 6 weeks...but almost always 5 days....don't need to call or come in unless she has a 105 can sure count that she's not going to get the measles now!...imagine this plus a high fever and brain swelling - that's what measles are.(She had it as a child.)"

The kicker here is that Chris and I were scheduled to go to Orlando for a business trip for 2 days on this day! We went ahead to Orlando and mom and Uncle Mike came to the rescue. She is doing better, but now her skin looks all mottled and scarred. It is smooth to the touch, but looks like she has scales of red and purple! I swear I just wanted to cry every time I looked at her. But, through it all, she was still being her silly self when she could be. Dante was apparently very nice to her the whole time ("Carina has polka-dots!") and she got to hang with Nonni, so life is good.

I guess we should have posted sooner about this next news: Dante had his one year CT scan..."See you in May!" Yippee!!!! His AFP came back at 2.3!!! All good signs. We weren't as excited this time for a few reasons. The way the results were written up made it sound not so good, even when it generally was. We met a new oncologist, who seemed nice, but doesn't know us at all and told us to come back in 6 months. The other 2 doctors had been saying it would switch to 4 months, so that made us a little uneasy. Dante has been having some behavioral problems at school, and they seem to be related to his hearing loss.

We're scheduled for an audiology appointment this week. He'll have ear molds made and have a different type of hearing test performed. The last test we had was such a drop off in his hearing that we were all shocked. Then 2 days later, we find out he has an ear infection, which means those results are probably worthless. He's definitely having a harder time telling what people are saying, unless they're looking at him or the room is quiet. He does a pretty good job of interpreting, but I catch him on things like- me: "...weekend." Dante: " sweetbay?" Most of the incidents at school have been during transition times, which makes me think he's not hearing all the cues to change modes. I made a visual chart for his class of their daily schedule to hopefully help with this. I also found out that he qualifies for some assistance through the public schools, so I will be researching that as well.

We will be moving forward with hearing aids at this point. Funding is an issue that I am trying not to think about. They are expensive and insurance does not pay for them. The program I was shown to apply for assistance to have them paid in full? I make $2000 more than the qualifying income. Bummer. They are going to give us a loaner set at first to get him used to it and try it out. In the meantime, we'll be trying to find some other organizations that assist in paying for them.

On a more positive note, tomorrow we are off to a Gasparilla party with the entire crew and then Ryan's birthday party on Sunday. The kids are still happy and making us giggle everyday with new quotes. "When Carina is grown up like me, and has blue eyes, and new shoes, she'll be able to use the potty like me!" "With your hair combed like that, you look just like Uncle Mike" " No, I don't, because I'm naked."


  • geez, no wonder you were stressed! Poor Carina but I'm glad the worse is over. I can't believe his darn hearing aids aren't covered under insurance...what a rip! But real glad his CT scan came out okay!

    By Blogger Kip, at 3:35 PM  

  • I don't know if you have already gone this route, what about Florida's Part H? My son was born with a cleft palate and they paid for just about everything until he was 5. If you haven't given it a shot, here's the info if found off the internet.

    By letter:
    Florida Developmental Disabilities Council
    124 Marriott Drive, Suite 203
    Tallahassee, Florida 32301-2981
    By telephone:
    (850) 488-4180
    (800) 580-7801 (toll free)
    By Telecommunciation Device for the Deaf:
    (850) 488-0956 (TDD)
    (888) 488-8633 (TDD toll free)
    By fax:
    (850) 922-6702
    By e-mail:
    By Internet:

    By Blogger Greg, Tammy & Jason, at 6:58 AM  

  • Hi Ya'll,

    Cindy Smith here. I had dinner w/some Speech Paths this week. One said to look into the Scottish Rite foundation with the Masonic Temple guys (I think their the ones the ride in the little cars with the hats w/the tassels in all the parades!!!). Look into their association for financial assistance for hearing aids. Hope this helps.


    PS-Nice community involvement Chris at the polls Tuesday!

    By Anonymous Anonymous, at 11:08 AM  

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