Sunday, March 13, 2011

Update's


So some new things have happened with Hailey lately. First off she is a year and a half old now, is only missing about 4 more teeth (she is working on 2 at a time now on those poor molars). She LOVES coloring, on just about everything. She still loves her routine in the morning of getting up, watching Mickey Mouse Club House (that's a must if we want a good day), Chuggington, and Handy Manny. On the days I have off work (which lately is maybe once every two weeks) I take her too the park in the morning and we run around for about a good hour or two before we come home and read some books (which is also her favorite! I can leave the T.V. off ALL day as long as she has a book or two to read). Her hair is still blond and getting long and curly, I think its about time for a trim on parts of her bangs, and her eyes are still very much blue.

She has learned how to jump, and she loves counting up to three with me (2 seems to be her favorite number). Her favorite toy right now is her little magnetized drawing board things. She sleeps with it, eats with it, takes it in the car, and tries against mommies wishes to take it in the bath with her. She will sit there for hours just drawing and erasing, and sometimes has mommy draw while she erases, which is a perfect time for us to work on our letters :-). She has also become very sassy, she likes to tell me no, or that everything is her's. If I am on the phone, she shouts BYE in a very loud tone, letting David or whoever else on the other end know, that my speaking time is done. She has also started to tell me to "come on" or "now mom" her "pwease" is getting better, but her "sock" has changed into a rather naughty word now.


On the medical side, we just had a visit recently with her Pulmonary doctor again down in Phoenix. Dr. Thomas has been wonderful with us, its amazing. He had even shown up in the hospital at 7 am the day following her seizure (mommy was not fully awake or prepared for that visit). He has decided to take my mini off of the Pulmacort (the inhaled steroid with her nebulizer machine) and she is now using an adult inhaler with a chamber and mask. Two puffs a day of the Flovent (a stronger steroid), which takes 30 seconds to do, compared to 10 minutes. She also has three different test's coming up very very soon. We have our Sweat Test in the scheduling process right now, awaiting the call very anxtiously from Phoenix Children Hospital on that. Dr. Thomas warned me that to get an accurate reading on such a young patient, we may have to do the test as many to as a few times as 5 or more times. Its not invasive so I am okay with it so far. The next test he has ordered is a Immune Panel to see what her numbers are at. Cystic Fibrosis is still their #1 "choice" on the disease list right now, but the second to him is an Immune problem, where she just wont ever get a "100%" better from being sick. And last but not least the third test is to test her Pancreatic Eleastise. He said if the numbers are off on that, it will go along with the CF, but if she tests neg. for CF but the numbers are bad with her pancreas then we have a whole other road to travel. Now that is just from one doctor keep in mind. We still have to see her GI doctor, and now a Neuro Specialist in April. The GI wants to set up another Barium Swallow test on her, to see why and how much she is still aspirating. We have her 18 month check up this month, but dear old mom is going to be out of town (much more like state) so I have to reschedule that one. During her Bronch and her Upper GI, they did an allergy panel on her, and she tested positive for dairy products and nut allergy. So we are back on the Soy diet, of no cheese, nothing that has TOUCHED cheese, no ice cream, no peanut butter, no nutella, nothing. Makes cooking for the mini very tough. Her and I live off of a lot of Grilled Chicken, Rice, Fruits and Veggies. Right now her weight is still only 21 pounds, and she is 32 inches long. Lets just say the little girl owns more belts for her pants then dear old mom. Her exczma has gotten better with the change of diet, which is nice, but she has a new patch on her leg with the little bumps.

Nothing much more to update on for as far as I can think, for its only 0300 so my brain is not completely functioning yet.

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