Thursday, July 23, 2009

Remission!

Hurray Myla is in remission. Yesterday we went to the Nephrologist and found out that Myla has responded to the steroids really well. Myla will still have to be on steroids for at least the next two months but is doing so much better. The doctor said she will probably relaps up to 6 to 8 times a year. We will have to test her urine everyday for protein for the next 10 or so years. Can you imagine. Crazy! Having Myla on steroids has been really hard. Her personality has totally changed. Once in a while I see small glimpses of my little girl and it makes me miss her so much. It is hard having Kirk's family here, they have not seen Myla for a few years and so they do not know what a amazing girl she is. They only see this crazy girl...

On a brighter side, since we have been going to the specialist it has made me so grateful that I have healthy kids. There are some really sick kids. Kids that will be sick their whole lives. For this we are really blessed!

Tuesday, July 21, 2009

Anniversary


Kirk and I just celebrated our five year anniversary. It has been five fun, crazy, hard and learning years and now on to the easy days right??? This past year has been really great for Kirk and I. I have been reminded of all the reasons I feel in love with him and we have really grown so close. Thank you Kirk for the past five and cheers to another 50.


Saturday, July 18, 2009

Crazy house!

My house has been so crazy! I got back in town last Wednesday and that same day Kirk's brother came and stayed until Sunday morning. Sunday night Kirk's sister, her husband and their four kids came to stay. Tom and two of the kids go home on Monday and then Kim and the other two kids will stay another 10 days. It sounds a little crazy to have that many people in my little house but Kim is amazing. The house is clean, dishes are done, laundry is done and everyone is happy. I have so much to learn from her, so I am glad she is stay another week.

Also I am so excited. Kirk's family has an amazing musical talent. Tomorrow Kirk and his two nieces will be singing in church and his sister will play the piano. Since I was not born with that talent at least I can enjoy it right?

Tuesday, July 7, 2009

Myla Update

Today we went the nephrologist (kidney specialist) at Phoenix Children's Hospital. This doctor was amazing and really helped me understand what challenges we have ahead of us. When we were in the emergency room with Myla she was a perfect angel. She let the doctors do what even they needed and was so sweet. Well today was not the case. If a doctor came with in 10 feet of her she started screaming. She was really traumatized by the catheter and poking they did the other night.

What I learned is first that Myla will have to be on steroids for the next 12 to 18 weeks. He talked about the mood changes we will be experiences and the weight gain. Now with the mood changes I have already started to see them and let me just apologize in advance for what she might do to you or your kids. Now don't be scared really!?!

The part that upset me the most is she will probably struggle with this on and off until she hits her teens. Once she heals from his episode they gave me tester strips to see if her kidneys are leaking protein again. Then back on steroids. Now if she keeps relapsing they will do a biopsy on her kidneys to get a better what is really going on.

Myla looks so much better today and has gone to the bathroom five times today. Hurray!! She will be "puffy" for quite a while. My sister was on steroids most of her childhood and people always made comments about how she looked. It made her feel really bad about herself. So if I could ask that people do not say anything with in ear shot of her. I know that I can not control everything or everyone but I would like to try to avoid some of it.

Well we are flying home tomorrow. See everyone soon!

Sunday, July 5, 2009

Current pic of Myla

So here is what Myla looks like tonight. It is not a good picture since it was taken from my sisters phone but at least you get the idea of how "puffy" she looks.

Vacation and Hospitals

Hurray for vacation... boo for hospitals!

A little over a week ago I noticed that Myla's eyes were puffy and then each day they got more puffy. I took Myla to the doctor before I left out of town on Thursday and the doctor said she had a double ear infection and that could be why her eyes were swollen. I know she noticed my hesitation so she said well lets take a urine sample just in case. I could not get Myla to go to the bathroom so I thought she was just not sure about peeing in a cup. Her face did look much better and so we flew to Arizona that night without another thought. Friday she woke up and her face was puffy again and by that night I noticed that her stomach was really large. I also started to think that I did not notice if she went to the bathroom at all. I asked my sister and mom if they had seen her or taken her and they said no also. On Saturday morning her face was not as swollen and this whole time her has been acting just fine. I called the advice nurse because it seemed like she was bigger in her legs and her pull up was dry and she would not go to the bathroom. The advise nurse said that push fluids down her as much as I could and just watch her all day. If she had not gone to the bathroom by that night then bring her into the emergency room. Well by Saturday night she still had not gone and by this point the last time I remember her going was Wednesday and she was looking really big. I took her to Phoenix Children's Hospital and they were amazing. The first doctor that looked at Myla just said well lets run some test to see. He must have sent another doctor in since he was not sure and as soon as he saw Myla he knew what it was. After the tests came back it confirmed that Myla has Nephrotic Syndrome.
Nephrotic Syndrome is a set of signs or symptoms that may point to kidney problems. They clean the blood by filtering out excess water and salt and waste products from food. Healthy kidneys keep protein in the blood, which helps the blood soak up water from tissues. But kidneys with damaged filters may leak protein into the urine. As a result, not enough protein is left in the blood to soak up the water. The water then moves from the blood into body tissues and causes swelling.
So what does that mean? That means Myla is now on steroids and will be going to a kidney specialist for probably six months to a year.

You would not believe how big Myla is today. The doctor said she looks like the michelin man. Since Thursday she has gained 5 lbs. It is so crazy holding her because she does not feel like my little girl. We are still in Arizona and will be here until Wednesday night. Kirk is home and going crazy not being here with is little girl. We go see a specialist tomorrow and I hope that will make us feel better knowing what to expect.
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