Ear, nose, throat DR

Yesterday, after months of waiting, we finally got to see the ENT. He said that Mikayla has some rhinitis (spelling?) and that she suffers from post nasal drip as well as allergies. We assumed that was the case, but that is not really why we went to see them. He prescribed flonase. I told him that I wouldn't give it to her because in the past flonase was the only med she was on when she would just be walking and collapse. He gave me a spill about how it has been prescribed for 20+ years and he has never heard of such a thing. I told him think what you will, but I am not given it to her. He changed his mind and decided on a steroid mixed with saline squirted into the nose. The med is in the family of meds we are concerned with as being the root cause of her skin falling off in December. I explained that to him and the answer he gave me was that it doesn't enter into the blood stream and that he does it everyday. Whatever! So at least we were able to determine that yes she does have PND and the next time she is put to sleep they will remove her tonsils.

CT scan results

In October, Mikayla had developed a mild "hack" kind of a cough, but not really. The doctors in KC had tried some antibiotics, but for the most part it never really went away. Because of the on again off again nature of the "hack" they were a little bit baffled, but never too concerned about it. We tried PFT's and they always came up clear as well as x-rays. I had asked in the past for a CT scan, but it wasn't issued due to the fact that it didn't seem medically necessary and the doctors didn't wan to expose her to more radiation if we didn't need to. Today, however, we finally received the scan. There were 3 results that still leave more questions than answers. Result 1= Mild air trapping (likely small airway disease)/ Air trapping, also called gas trapping, is an abnormal retention of air in the lungs after expiration. It is observed in obstructive lung diseases such as asthma, bronchiolitis obliterans syndrome and chronic obstructive pulmonary disease. The cause is obstruction such that the patient is unable to expel air completely. So we will see a lung specialist to see what they think it is. COPD, asthma, or B.O.S. 2=Minimal left lower lobe patchy airspace opacity (her lower left lobe has a dark spot)? who knows that will be up to the lung specialist. 3= Sclerosis and fragmentation of the bilateral humeral head epiphyses/avascular necrosis. (Avascular necrosis is the death of bone tissue due to a lack of blood supply. Also called osteonecrosis, avascular necrosis can lead to tiny breaks in the bone and the bone's eventual collapse.)in short she is losing the blood supply to her left arm at her shoulder. That last one was a bit of a surprise considering we looked at her lungs not her arm. The radiologist or computer has a keen eye. The course of the next month will present more answers. We will update as we know the answers.

Settling in Seattle

Well it's been 2 months since my last post and many things have happened. I guess as you can tell by the picture Mikayla is doing really well. One year ago we had nearly finished 2 rounds of chemo with little to show for it. Her had not achieved remission and our minds were swirling about what lied ahead. It was a hard road to travel, but I think things are working out well. Mikayla has some residual effects from treatments that include chronic cough, nasal problems, and two different colors of skin. Time will dictate, but from what we understand these should all clear up with time and treatments. We miss our family and friends, but we are starting to settle here nicely. Our care team in KC was the greatest and will never be replaced, but so far the team here is doing pretty good. Our oncologist has hooked us up with a geneticist to evaluate Mikayla's genes to help determine what is what and reasons that may or may not be. Confusing yes, but in the end maybe I will understand exactly what is going on because it is way beyond my minds capacity to identify with. We have made our big move and things are going great. Here in Seattle it always seems to be comfortable outside. We have taken a liking to the outdoors and enjoy all that the sound boasts. Parks, lakes, and mountains to name a few. Mikayla wants to go, go, go. There is no stopping this girl.

Good Morning to you all our friends and family. July 4 , 2009 KK complained of severe back pain so we took her to the E.R. where she stayed for almost 5 hours and came home with antibiotic for possible UTI. Then Sunday was here and she was very tired , running a low temp fever and just did not feel well. July 6. 2009 , she still feel the same , I went to work , Mike was watching all the kids. Today was the day , a year ago when I got the phone call from Mike that she developed numerous bruises all over her body. I left work at 1:30 pm , and called her Pediatrician and was told to bring her in around 2:30 pm. I was very scared. Had this feeling that something was not right. When Dr. E saw her , he said , "I don't know , but we may have to rule out LEUKEMIA." There was silence in the room , I was hoping it was just a dream. But it was not . We were told to go to the E.R. for prelim labs and wait for a phone call. Things were not looking very promising. We got a call 4:45 from her Dr. and we were told to start packing , he is sending us to KC....Our lives were never the same since then. It was a very long journey. I saw my family fight!!! I saw my daughter FIGHT!!!! I saw the world fight with us...All the things happened to us made me realize that there is a bigger power who is in control. It is true, that there is nothing that God will give you that you cannot handle. With our family, my husband , my kids and our friends we are still here FIGHTING!!!! and WINNING!!!!
Mikayla is doing great. She is in remission.....She is back to her laugh, her orneriness , her bossiness ...she is a MIRACLE!!!!!!! Today we celebrate strength , hope , faith , courage , love , patience , Mikayla's fight and most importantly, MIKAYLA'S VICTORY!!!!!!!!GOD BLESS...........

Mikayla is doing good. She is loving Indoor Swimming 2x week through Webb City. Praying that she continue to stay well and healthy. Her next appointment in KC will be June 10, 2010 and will have Pulmonary Function Test (PFT) in the morning at 8:45 then to the Hemoc Clinic for Labs/Exams. Thank you again to all our family and friends. Rea

moving ahead

Today, despite what's been going on, Mikayla took on a new challenge. She is now learning to be a competition swimmer like her brother and sister. Her goal is to do at least one swim meet before the end of summer. She woke up early today with a smile hoping it was already time to go and was so eager all day to get into the water. She had fun and now her ego is larger than life. She won't quit talking about it. Good job Mikayla! It is something she has longed for since last summer. She was given final clearance last week. As for the falling down and dizziness we still have yet to receive any new information, but will post what we hear as it comes down the pipe to us. Thank you all for keeping up.

back home

Today was pretty uneventful. We arrived at clinic around 930am and began the day with a CBC. Shortly after the CBC was drawn we had a three step blood pressure screening. Laying down, sitting, and standing up. All of which turned out to be within normal range. The NP came in and we discussed all symptoms and then she gave Mikayla a head to toe exam. She noticed that her right ear was a bit red and that her gums were a little pale. Not much was made about the discoveries as they really didn't present to be the problem causers. After Mikaylas check up the NP left to get the doctor to have him take a look and to give some insight as to what he thought the problem would be stemming from. The doctor asked some questions and tested her fine motor skills. She checked out and he then listened to her heart. All seemed ok. The doctor said she doesn't seem to have any neurological problems and that he was 98% certain that our ECHO and EKG tests scheduled later in the day would not give us any insight as to the cause. He said he was a bit baffled as to what to tell me is causing the symptoms and that since she has not been dizzy since Sunday that things are most likely settled and it would go away. We have to wait for results on the heart for a few days, but I was felt better as a parent knowing that I am at least getting tests and not hanging out with my hands in my pockets waiting for something bad to happen. With no signs that we had problems in the ECHO and EKG room I had begun to think that maybe it was just something like a fluck. Maybe lack of sleep or a previous infection that only recently burned off. We left the hospital around three in the afternoon and headed home. About an hour into the drive we pulled in to get gas. Mikayla was asleep in the back and had to be woken up to go inside with me to pay. From waking up to getting out of the van happened in the span of like five minutes. Before getting out I asked if everything felt fine and if she was dizzy she said all was ok. Her first step she took there she went. She began to fall right away as if she had no control. It was forward and to the right and she had no idea she was going down, she thought she was still walking! I grabbed her before she hit the ground and asked what happened and she said what do I mean. I said you almost fell. She said oh, I don't know maybe I was a little dizzy. This is the first time I have seen it happen from start to end. The other times she has fallen, I have only noticed when you hear a thud. It is a bit odd. She has always said that she was dizzy after the fall and that is the reason for it happening. I don't think that is the case. From beginning to end she never knew she was going down and a few seconds before hand she said all was ok. I haven't shared this yet with the doctors. I told them today that she falls because she is dizzy. They are trying to figure out why she is getting dizzy, but that is not the case. I don't think she gets dizzy, but blames dizziness because she has no other explanation for us or herself as to the cause. Can your brain just shutdown motor skills at will, but give no advance signs. Signs that can be detected by looking at motor skills? The docs will think I am nuts now when they find out what I seen and what is in my head. They still don't know what to think in the matter and to add to that the fact that she is not dizzy before it happens really will throw them for a loop.