FREE Aquafor

Aquafor has a Medical Donation Program that sends out a three month supply of Aquafor for free. I called them today and she asked me for some information, gave me a fax number to fax a letter that my pediatrician wrote for us stating Kallie's diagnosis and treatment and they send us a three month supply. I am so happy b/c that will save us a lot of money!!

I called the company that manufactures Amlactin, the exfoiliant we are using to see if they offered something like that but of course they don't. She did however say that there are coupons on their website that I can print off so at least that will save us a little bit of money!

Explanation of Ichthyosis and Bathing

I read this on a website and thought it was a good explanation of how Ichthyosis works and why it may be good to bathe Kallie twice a day:

With ichthyosis, the molecule that makes the skin waxy is broken. Different genes cause breaks at different places in the skin, but the end result is the same - people with ichthyosis do not have the protective waxy layer on the surface that keeps them from drying out just from regular activity. They are constantly losing water at 4 to 7 times the rate that your skin loses water. This translates into dehydration, which translates into difficulty in regulating body temperature through sweat.

The body tries to compensate for the water loss by increasing the skin growth rate. This is where the scaling comes in. You have skin that grows too fast to keep it thick to keep the water in, which doesn't work anyway because the top layer is dead and not hydrated by blood flow or by skin oil, which is produced at the normal rate, so there's never enough for the amount of skin. Sweat glands get blocked and the thicker skin is an insulator, which compounds the overheating problem.

Now...bathing with ichthyosis helps fix these problems. You are essentially rehydrating the skin from the outside. So bathing multiple times a day helps some people, while extended soaks once a day are better for others. Either way, while wet, we take advantage of the softened skin to abrade some of it off and kill some of the skin bacteria that tends to accumulate and cause the keratin smell. Once the bath is done, we go right back to dehydration mode, so the most important thing is to apply a layer of cream everywhere as soon as possible to hold in the water that soaked into the skin during the bath.

Ali is ENGAGED!!

I am so so excited for Ali and Ryan. He finally proposed and the story is quite funny. While we were at the beach we took Kennedy Jane to see Ice Age, Dawn of the Dinosaurs. So Ryan insisted that he go get McDonalds for dinner last night. When he came in and said to Ali "didn't you guys take KJ to see Ice Age, there is a cool toy in there for her". When Ali opened it her diamond was in there. Its an amazingly gorgeous ring, a 1.5 carat princess cut diamond with princess cut sapphires on each side. She loves it and is so excited!

Kallie's Derm & Eye Doc Appt

We had two appointments yesterday that we drove back from the beach for on a sunny day, so at least they were good appoinments!!

Our first appointment was with our dermatologist, Dr. Swain, and it went well. She had just gotten the pathology reports back on the white pustules that she cultured last week and we found out it was staff! YIKES! She said that it was a very mild case of it and she was very pleased that the Altabax (topical antibiotic) was working so well b/c we could not see any more pustules. She wanted us to continue using the Altabax for 5 more days just to make sure it stays gone and to call her back if we see anymore.

We had also been using a moisturizing exfoliant (over the counter) on her face to get rid of the collodion membrane and it has worked really well. Dr. Swain wanted us to start using that all over her body b/c we were having such good success with it on her face. We were really pleased and encouraged that the mildest antibiotic and moisturizing exfoliant worked so well b/c as she gets older we can be more aggressive with exfoliants.

Her face looks SO much better this morning, its improved so significantly and it just makes my heart smile!

Then we went to see the eye doctor, and I was really hoping for good news b/c her eyes are closing on their own and seem to be a lot better as well. Dr. Rich was much more relaxed this time once he saw her eyes, he said that they looked fantastic and everything was great. He said that we could keep using the eye drops when we thought she needed them but we didn't need to be worried about her eyes anymore. We follow-up with him in 8 weeks just to keep a watch on them but he was very happy with her eyes.

We were very happy with both appointments and feel like things are getting so much better!!

Kallie's Derm Appointment

We saw Dr. Swain again today b/c we were worried about the way her face looked while this collodion layer is peeling. She was concerned about the white spots on her forehead that she called pustules (spelling?). She said that it was a possible that it was sweat bubbles but could also be yeast or bacteria. She cultured it and said that we wouldn't know for about a week on that. She gave us a few topical ointments to go ahead and start treating it. One of them is an exfoliant to go ahead and get that collodion layer off. She also suggested switching from the Aquafor to just Eucerin lotion b/c the Aquafor is so greasy. I have already used the Eucerin lotion and I think it works as well as the Aquafor but looks better b/c she is not as greasy. We are also going to start using Cedaphil body wash and I also got some of that lotion to use as well.



She seems to think that the way her arms and legs look now is going to be how they look long-term so now we just come to terms with that and start figuring out how to manage it as best we can. I asked her if the idea was to keep it moist or dry, and she said that there wasn't a right or wrong answer, so obviously I am going to go with moist b/c it looks better and I have to imagine feels better. I asked about baths, if I could at least soak her in water more than once a day before putting the lotion on b/c it seems to make her skin more moist and she said that right now that was fine, it wasn't going to cause any problems.



I asked her about Kallie's ability to sweatas that is a big concern for me and she said that at this point we don't have any way of knowing b/c infants in general can't regulate their body temp well so thats going to be a wait and see kind of thing.



The frustrating part is that there just are no right and wrong answers, no black and white way of managing this. But the bottom line is she is healthy and happy, we just need to figure out how to manage it and that will come with time. We see the doc again next Wed to follow-up on the white spots on her forehead.



Please keep the prayers coming!