ACG

I WANT SUMMER! Well I would settle for spring... Instead, I got a virtual blizzard last night with periods of white outs from the snow... though it doesn't seem to have accumulated much.

Since I can't be outside, warm, and soaking up the sun rays...  I spent the afternoon in front of my computer...  I came across this article on ScienceDaily.com.  The article claims that there is a new study that concluded that females require more genetic mutations than males that result in the behaviors and characteristics associated with Autism.  I was drawn to this article, obviously, because both my son's are on the spectrum where as my daughters appear not to have any autistic implications.  Its something that I find very curious, and I guess I generally accept that boys are somehow more susceptible... (or when I am particularly upset with Jon, I allow myself to assign the cause to the Y chromosome they got from Jon :)

As I was reading it, my thoughts drifted to the testing we recently conducted for Wes.  Our goals were to determine if there was any genetic conditions present that we have therapies or treatment for, understand if there was any further risks as a result of his genetic condition, and to try to understand the genetic passage of the condition if one exists.

After meeting with the geneticist, we understood that we would start with a blood test that would determine if Wes had a genetic addition or deletion.  We also thought this was just a starting point.  As it turns out, Wes does not have a genetic addition, meaning no extra genetic material, nor does he have a deletion, no missing genetic material.  We understood that additions and deletions account for the majority of the genetic conditions, but we expected that there would be more testing offered after that.  This proved not to be the case.  Once the results came back normal, we were told that if we thought there was something new that they might be able to help with we could come back. Otherwise there was nothing more they could offer us.  This is not to say that Wes does not have a genetic mutation, it only rules out an addition or deletion.

Rate your pain

My sweet, kind, caring, thoughtful, angel on earth... Alivya made this at school. 

It says "I have a dream to be a nurse to make medicine that works a lot"

The tall figure is handing medicine to the seated figure "Here is some medicine." Seated "Thanks"

At the bottom it says "make you sick potion in the hidden base" which is a reference to the Harry Potter book we have been reading, can you guess which one we are on?

She came home sick from school today, fever, 102... No wonder the poor thing wants to make people better!  Kills me that I can't seem to keep them healthy.

Dog days

If only she could breathe for a few nights straight, she might not be so exhausted every day. :(

Yesterday Ava slipped in the bath tub and jarred her wrist.  While she hasn't really complained about it, I noticed that she isn't using that hand much, and pusing in the seat belt was difficult.  Add this to the endless upper respiratory congestion (which invariably leads to lower respiratory infection) and I have one super tired young lade everyday.  She fell asleep in the ten minute ride to pick up Wes from 4K and again in the ten minute period we waited for Jon to meet us at my work. She is not only fatigued, but extremely irritable.  Sometimes I think I need to lock her and Jon and in a room and let them have each other for a bit. (Jon has been put out by a strain injuy and hasn't been able to run in weeks.  Although his mood has been improving, it was pretty touch and go for a while back when it first happened.)

Wes also has some major nasal congestion and I could tell didn't sleep that well last night, but so far he has been pretty normal mentality wise. Might have Ava stay home tomorrow to recoup... will have to see.  I am sort of looking forward to running in some warm weather again... if it actually does warm up that is. High of 43 in the forcast...  so strange coming off highs in he teens yesterday!

I WANT SPRING... NOW! ::Pout::

Pneumonia & Toilet Blues

We got Taylor and Wes' new potty alarms on Thursday.  It was late in the day, so we decided to wait to try it on Wes until today.  We were hoping that the alarm would help him to associate the feeling of needing to go with being wet.  So far, it has totally flipped him out (the first three times) and just become an annoying thing to deal with every 20 minutes or so.  Seriously just took him off the pot and the thing is alarming again.  

Taylor has been wearing his at night.  Two nights, and three wet pants each night.  At least he doesn't seem to sleep through these alarms, but he doesn't feel the need to go and get up.  Ugh.  I know I need to keep it up, but I need some words of encouragement.  

Going out tonight with Jon.  He gave me tickets to see Wicked at the PAC for my birthday.  Today is the day.  I'm excited, but we have had such a busy day so far, that it has taken some of the excitement out of me.  We had to take Livi in again.  You guessed it, another pneumonia.  Its absolutely the most frustrating thing to not know how to keep your child free from illness.... let alone two children. I am happy that I didn't sit around waiting as long as I have in the past to "give the asthma plan a chance." It seems to me that the asthma plan really just prolongs her suffering.  

3404

The Centers for Disease Control says that in 2013, there were 3,404 Asthma related deaths in the US. 9.5% of all children in the United States suffer from Asthma.  There were 14.2 million physician visits in 2013 in the US for asthma related problems.  We did our fair share.  This morning I spent 4 hours at the clinic with the pulmonologist who is managing our daughters' Asthma. We determined that between the two of them, they have had 5 seperate episodes of pneumonia since early October 2013.  During each of these episodes, they requried Prednisone, a potent corticosteriod and Augmentin, a potent multifactoral antibiotic to recover function. For at least seven days prior to an office visit, and until the symptoms disappear, we also administer strong inhaled corticosteroids, including both fast acting Albuterol and longer acting Advair.  The shear physical discomfort that these illnesses cause the girls is enough to get me going, but when I sit down and really start to think about the financial cost, both in actual funds paid for prescriptions, X-rays, and physican charges as well as those paid in lost productivity (Both Jon, me and the girls)... I don't know if I have the right words to describe what the cost is to our family. 

Ava has been brewing this pneumonia since at least Chrsitmas time.  She has been seen twice and was given an extended 10 day prescription for Prednisone.  She has had periodic low grade fevers about once a week, and a couple of higher fevers late at night.  More recently, she has been overwhelmed by such extreme fatigue that she is utterly impossible to manage.  She has been falling asleep in the 10 minute ride from our house to Wes' school, and throwing huge crying fits over really small potatoes.  (Like the fact that the crust on her toast last night was, in her opinion, "too hard") Still, when she is rested and awake, even on mornings following the feverish evenings, she is full of spunk, running around energetically, playing, and participating in her normal routines.  I asked her if her ears hurt, if she had a sore throat, if her tummy hurt... she has had no complaints.  I asked if it was difficult to breath... the answer is always no.  In fact on super bowl Sunday, she laid down at MIL's house and I went to her, "Ava, are you feeling ok?"  She said "Yes, I am just cold." Ten minutes later, she is totally flush, burning up, lethargic, and confused. But don't get me wrong... she was "fine". Well todays X-ray really told the story.  The poor thing.

Which reminds me to point out that even though my kids are so often uncomfortable, so often suffering illnesses longer and more disabling than those of their peers, they never complain.  They still find reasons to smile, they still love with everything, play hard, and just never complain. (At least not about being sick...) Ava has found nearly everything else in life to complain about these days.  Oh if I had a dollar for every time she asked me if it was time to leave today at the doctor's office...

Prophecy

Yesterday, during the "snow" day for extreme sub zero temperatures, Ava informed me that she had a prophecy.  She predicted that she would also "be off school tomorrow" (today).  I told her I didn't think that was likely, and let her down gently.  It didn't matter, she ran off fake crying and pouting.  She does this really well, constantly all day long.  Pretty soon she got over it and played pretty nicely with Taylor and Livi for the rest of the day.  I was surprised that I was able to get just about everything done that I meant to, including my home baked Chili pretzel bread bowls (pictured above), running 3.5 miles, showering, and napping...  go me!

I was at work when I received a text from Jon asking me where the thermometer was.  I immediately assumed he was going to be checking Taylor's temp since T had a bad runny nose all day.  The other kids were basically asymptomatic.  I say basically because this is our house.  Our kids have an endemic level of sickness from September through May, so evaluation of "symptoms" is all relative.  I like to think most families with four children at these ages would agree, but I don't really know.

Anyway, it turned out that it was Ava who spiked a high temp and threw up before finally zonking out  for the evening.  Thus, fulfilling her own prophecy.

Lessons in Immunity

Last month was prematurity awareness month. Usually during November, I post a lot about how prematurity has affected my children and therefore, my parenting. This year, unfortunately, I was so busy completing my nursing degree that I didn’t have time to post to my blog. Still, as my eldest twins are poised to turn 8 years old next week, I was reminded yet again what it means to be the parent of preemie (or four as it is in our case).

 Over this past weekend, we took a minitrip a few states away to visit family. When we left, our eldest daughter had been in her yellow zone asthma medications for five days. We move from the green zone meds to the yellow zone meds whenever we see signs or symptoms of her triggers. In her case triggers include a seasonal cold (cough, runny nose) and cold weather (which can cause a cough and runny nose). Thus we start yellow meds when she has a cough, runny nose, or other shortness of breath, dyspnea or wheezing… Since our temps this month have averaged around negative numbers (and therefore super negative windchills) it was not at all surprising that she needed her yellow zone medications. 

 Friday she was excited, active, and running around. Saturday she was still active, keeping herself entertained, not running around, but well. By Saturday night I started to have some concerns, namely the tell tale rosy red cheeks she develops when she is about to tank-healthwise. I first noticed them during dinner, when she wasn’t overly enthusiastic about eating. I gave her some Advil and had her lay down. The next morning, Sunday, is when it all hit home. She was lying on the couch moaning and crying. She was warm, but not burning up, still rosy… thermometer read 98.9F. She told me she was dizzy when she stood up and didn’t sleep all night. I gave her some more meds and she fell asleep for an hour or so while we found a local Urgent Care. 

 The urgent care we found was amazing. They got us back to a room quickly and we saw a provider within 15minutes. They did a strep swab, gave her a nebulizer treatment, and took a chest xray. 

 So what does this have to do with prematurity? EVERYTHING… 

 Liv had already developed right upper lobe pneumonia. Her symptoms, a runny nose, began on December 15th. The common cold typically runs its course in 7 to 10 days. Therefore, nurses and doctors often advise patient’s to allow these symptoms 7-10 days to resolve, the principle being that after that time period it is less likely that the causative agent is a cold. So because Liv has asthma, which is a large part due to the fact that she was born 14 weeks early (26 weeks gestation), weighed 1lb 14oz at birth, and was ventilated for more than three weeks during her first month; her body cannot fight infections like yours and mine (typical healthy people). Add to this, the fact that the medications that we have to treat asthma (strengthen ventilation by reducing restricting inflammation within the lungs and dilating bronchial airways) actually also cause immunocompromise by restricting inflammation (the first step in our natural humoral immunity). 

 My point is that within the time the average person takes to fight off and recover from a cold, my child developed a debilitating pneumonia. If this were an isolated case, it might be less impressive, but the fact that she had pneumonia last month (November) and the month before (October) and two months before that (August) and at lest five other times in 2013. The fact that she smiles through it all, doesn’t let it defeat her, works hard in school, plays hard, and just finds everything in life wonderful and amazing… says more about her than me.

 Prematurity is a syndrome, and it lasts a lifetime. In 2008 US News and World Report wrote an article about the lasting effects of prematurity. In it was cited a research report published in the Journal of the American Medical Association in March of that same year. This study concluded that for their subjects born between 22 and 27 weeks gestation the rate of mortality (death) during their early childhood (ages 1-6years) was 5.3 to 9.7 times higher than children born at term and late childhood (ages 6-13) 7 times higher. Other studies have suggested that preemies who live into adulthood are more likely to suffer from COPD, sleep apnea, and other disorders involving their respiratory tract. 

 Alivya will always struggle with lung infections. She will probably always take daily inhaled medications in order to breathe comfortably every day. She will always be more susceptible to colds, flus, and minor upper respiratory infections. Her fate lies in the technology that asthma and pulmonology research develops, but prevention of prematurity can prevent this from being the reality of so many others.