Picture taken Oct. 2012
Aria is our youngest daughter. She was born in September of '07. She's a very beautiful, lively, spirited, young girl but she's always struggled with her health. She's been in the hospital on numerous occasions. She's been considered failure to thrive for the first couple years and was always in the lower percentile of height and weight.
For years she was always on one anti-biotic or another, usually only going about a week or two before she was put on another one. She'd get urinary tract infections, yeast infections, sinus infections, ear infections, etc. She's been in the hospital at least four times for different surgeries or infections, including: c-diff, removing of tonsils, removing adenoids twice, putting tubes in her ears, and in December '11, she went through nasal cavity surgery where they broke open her nasal passages and cleaned them out because they weren't draining. The nasal cavities were still filled with puss even though she was on antibiotics up until the surgery. Within the next couple weeks she'll probably be having surgery due to having Chiari malformation.
Most of the time you'd never know something was wrong with her. She can be running 102.5 temp and still be playing strong until it hits 103. She currently has about three to five different medicines she takes plus a breathing treatment or two every night as preventatives.
We praise the Lord for health insurance!!!
POSTS
Finding out she has Chiari Malformation - EEG's & MRI's
Dealing with doctors - Aria Visits more Doctors
Upcoming Surgery
Bronchoscopy results
Small Glimpse Doctors' Costs and Treatments as of April '13
UPDATE - Aug. 9, 2013
In May '12, Aria had brain surgery to take care of her Chiari Malformation but we just found out that she may have to go through it again within the next few months because she's grown and her bones are blocking spinal fluid from moving freely from spine into base of skull like it should. Right now it seems only to be causing headaches but could eventually lead to numbness in fingers, loss of coordination and balance, and other things.
In Sept. of '12 she was finally diagnosed with hypogammaglobulanemia. This is the common variable autoimmune disease that she has but she also has a primary immunodeficiency on top of that. In Oct. '12 she started doing weekly IVIG infusion. This has helped immensely in helping her fight infections.
In Sept. '12 she was also diagnosed with laryngomalacia (growth on her larynx).
At the same time they realized that she has fat in her lungs due to her reflux. The doctors think that at night her food comes up her throat and instead of going back down that some of it goes into her lungs and turns into fat. In April, the doctors did another bronchoscopy and found out that the fat content in her lungs has grown worse.
Every night Aria takes five pills, two nose sprays, and an inhaler. She also takes a couple pills in the morning and at lunch. All of it is to help her stay as healthy as possible.
She normally sleeps 11 to 12 hours a night but is still tired and now that school is back in session, she gets extremely worn out.
Unfortunately, what I've written about Aria's illnesses is only the highlights and does not cover all that she has gone through in the past or what she deals with on a regular basis.
In a couple days, on Aug. 11th, Tina and Aria head to Colorado to the National Jewish Hospital. They are the leading respiratory hospital in the country. They will be running tests on her for the next two weeks and we are praying that they can find some answers in helping our daughter get healthy.
UPDATE - Feb.'14
In the past five months, Aria has had four surgeries.
In Oct. '13, she had a fundoplication. I talk about it here. Future Surgeries
In Nov. '13, she had her 2nd chiari brain surgery but this time they cut the dura (the sac around the brain). It was at this time the doctor realized that she also suffered from hydrocephalus (too much water pressure on the brain).
In Dec. '13, she was back in the hospital because she was leaking spinal fluid through the incision that's in the back of her head. She was there a couple days to watch for infection. Later in the month she started developing lumps near her incision but we hoped it would go away.
In Jan. '14, Aria went through another Chiari brain surgery to fix the spinal fluid leak in the back of her head and she spent two weeks in the hospital with a temporary shunt in the small of her back hoping to allow the brain to adjust to the hydrocephalus. We chose this option because the other option was to put a permanent one in her head.
Feb. '14 saw us back in the hospital because she had developed lumps in back of head again and within two days of telling the doctor they put her back in the hospital and put the shunt in her head, making this her fourth brain surgery. The good news is that they didn't have to open up the back of her head again and in three months they'll check to see if the shunt can be removed. We didn't know this was an option when we first heard about shunts but we're glad that if her body can heal and deal with her hydrocephalus it can be removed.
A friend started a medical fundraiser for us to help us with our hospital expenses called Love for Aria Hope. The video of Aria that our friend put together was very sweet. It brought tears to my eyes.
We're also very thankful to those who blessed us financially during this major event in our lives.
We're even more thankful for your prayers for Aria's healing. Please keep praying for her.
UPDATE APRIL 2014
On March 11th, Aria had her 5th brain surgery. This was the most extensive. They took tonsil part of her cerebellum in the base of her brain and they put in a 2nd shunt. This kept her in the hospital for two weeks and caused her to have severe problems with her balance and having trouble walking, vomiting, and massive headaches.
April sees her doing a lot better but still gets tired very quickly and rests a lot. She's not allowed to go back to school until May. She's missed more school during first grade than she has attended but teacher says that she's doing fine academically.
Again, thank you for your financial help but mostly for your prayers.
