October update

(vision stim with christmas lights)

It feels like it's been so long since I've had a chance to sit down with my computer and actually think about what is going on lately.  The days just slip away and sleep has been a major priority.

Abby has had many appointments these past 2 weeks.  We've gone up on the Banzel (seizure med).  Her seizures lately seem to have increased a little.  The more subtle ones are coming more frequently and she is still having many incredibly irritable days.  The VNS was also slightly adjusted.

She had her eye pressure checked this week and it was found to be several points higher than her previous check 6 months ago.  Last time it was around 24 and this week it was 33.  The doc has increased both of her eye drops and we will check it again in 6 months.  

Josiah is his usual helpful, fun, self; chatting all day long and finding any excuse to stay up late.  Last night Abby was lying in bed fussing loudly.  I went in to snuggle with her and try to settle her down, all the while listening to J talk.  

At one point he asked me: "mom, when Abby gets big and becomes a walking girl, will she play with me?"   My heart just melted.  We've had many moments like these lately as he is slowly figuring Abby out.  He even explains to other people that Abby is blind and she needs help playing with toys.  It brings on such a mixture of emotions for me.  I'm so proud of him, but often times I find myself fighting back tears as I try to explain things to him.  

(Abby and Levi cuddling)

Lately as we seem to hop from one appointment to the next, we are able to interact with all kinds of children.  Some of them have more obvious challenges than others.  Josiah has decided that ALL children with special needs must be blind, like Abby.  He tells me so when he sees them.  I've had to explain to him quietly several times that these children are not blind but have other issues.  He promptly corrects me and tells me that, yes, they are indeed blind.

I suppose he has formed his own definitions.  

Levi.  What a joy.  Every moment I get to hold him during the day I feel my heart give a sigh of relief.  In those precious moments I think a weight is lifted.  His chubby soft cheeks are so yummy to kiss.  I find myself becoming an absolute goof ball trying to get him to giggle.  He is so happy and so generous with his smiles.

Most nights he is sleeping until 4 am, and some nights later.  I'm really thankful for the extra rest... it changes a person.   I get scary when I'm deprived!

This week our family is gearing up for a week of vacation in Florida!  We can't wait.  It's going to be a nice break from the daily grind.

little gym

Josiah has started gymnastics at the little gym!  These were taken at his first class last week.  He loves it!

This year he has become much more aware (and sometimes annoyed) of all the attention Abby gets through her therapies/dr. appointments.  It has been a challenge trying to keep him occupied during the sessions without making him feel left out.  There are just too many appointments to simply ignore him. 

 We try to make plenty of effort to include him in taking care of Abby.  He likes being our big helper!  I'm always a little surprised at the things he is willing to do for her.  If her feeding pump beeps, he will announce "don't worry mom, I'll fix it."  And sometimes he actually does!

One way to give him special time alone and to get some energy out is through this fun class.  We think one of us will take him to his class and leave the others at home, so that this will be time set aside just for him.

He really does have a good attitude most of the time learning to share mommy/time with Abby.  I think he has a basic understanding that she needs extra from us.  

It's not about fairness, but more trying to be intentional about building his little spirit up and giving him a break from the routine.

Sleep!

Last night Levi slept from 7 pm until 6 am this morning!!  Yippee!  We both got up to check on him a few times because...

     any other night this week might look like this:

up and eating @ 6 pm

down @7

up and eating @7:30

down @8:30

up and eating @ 10 

down @ 11

up and eating @ 3 am

down @ 3:30

up and eating @ 7 

Levi is now 3 months old and such a joy!  Smiling and starting to giggle, he lifts our spirits so much every day.  I don't think there is anything more beautiful than a baby's smile.

Looking forward to more sleep!

ER again

We had our first ER run from our new house last night.  It has proven to be a much quicker trip!

Abby had an off day yesterday.  She had several seizures, didn't do well at UCP on the tread mill and had a low grade fever (100.6) in the afternoon.

Right after supper Patrick found her on the couch in one of her prolonged seizures.  We hadn't heard her and didn't know how long she had been seizing.  After giving Diastat we loaded everyone in the van and rushed off to the ER.  It only took about 6 minutes to get there!!

After 3 sticks they finally got it stopped with IV meds.  They did the usual blood and urine tests in addition to the flu swab.  So far everything came out ok.  Her fever got up to 103+ at the hospital, so we know she is sick with something.  Poor thing.

The medication made for a restless night of tossing and turning for her and for us.  Today she is a bit disoriented and tired.  We are having a quiet day at home with no therapies.  It has been rather nice for all of us.

An honest portrayal of my wife...

 How many times has a man attempted to locate the words to describe the life he experiences with the woman he loves.  I know it is numerous.  However, I now join the ranks of these, shall we say star-crossed men in an attempt to describe their brides 

it is the way you still share drinks with me… your love of chic-fil-a milkshakes… how you continously show love to our daughter who can’t show it back… how you still seek to obey the Lord, when we had our 3^rd baby and how you bravely endured morning sickness, the ER visits, weekly shots all for a healthy baby… it is the way you listen to my dreams and follow me as I chase them or still listen even though you know they are not realistic… 

for the way to are so patient with Abby and rescue me when I am frustrated… it is that you would still rather be with me than anyone else… for the times when I get home and you say “I need you to take us out for a while”…  it is the way you still hurt with me every day over Abby, cry out to the Lord for her and celebrated a few weeks ago as she started lifting her hands when we put her tray on in the high chair…  for the way you look so beautiful without knowing it… how you have memorized all Abby’s medicine, surgeries… your compassion for those hurting… your contagious laugh... addiction to sweet tea

Paba, I have to confess that last week I still could not believe that you picked me.  

You are by far the strongest person I have ever known, I define this by…how you cared and sat with Abby in the NICU for 6 months… that you had the courage to have more children with high risk pregnancies…  that you patiently love and care for Abby, Josiah and Levi every day… for the choice that we made for you to give up a career to care for our children

I think you might be the smartest person I know (including all the rocket scientists I work with at NASA)… you are fluent in Chinese… you can figure anything out… insight into scripture… medical knowledge…

A wife of noble character who can find? 
       She is worth far more than rubies.

Her husband has full confidence in her 
       and lacks nothing of value.

She brings him good, not harm, 
       all the days of her life.

I am still crazy about you,  Happy Birthday,

Patrick

Happy Birthday Abby!

Sweet Abby, you turn 6 years old today. We can hardly believe the way time has slipped through our fingers. You are a precious girl and we adore you!!

Love,

Mommy, Daddy, Josiah and Levi

Abby Turns 6! from patty hull on Vimeo.

Infectious Disease

Today we took Abby to Children's Hospital for an appointment with an infectious disease doctor.

Over the past 11 months we have been tracking Abby's fever patterns along with her seizures.  Each time we suspect she might be feeling sick we take her temp and record it on our calender.  The seizures we've been documenting this way for several years now.  

Her fever pattern is very erratic, coming and going without warning.  It usually comes with no other symptoms, except an increase in seizure activity.

We took our documentation with us in hopes that this new doc might be able to uncover what is causing the fevers.  After reviewing our notes and a thorough physical exam he came to the conclusion that it isn't clear what the problem is.  Her fever patterns don't indicate an infection as they don't hang around more than a few days at a time.  They are too frequent to be colds or flu's.  There are no rashes, bumps or sores.

This brings us back to her brain.  Because of her encephalopathy it is possible that the part of her brain controlling temperature has been damaged.  How did this happen?  Probably from the bleeding she had in her ventricles during that first week of life.  This bleeding is also the cause of her CP, loss of brain tissue, seizures etc.  We wonder if the prolonged seizures have played a part.

There is no way to definitively diagnose this as being the culprit.  Docs come to this conclusion mostly from family reports, as there are no tests to prove it.

What does this mean?  We could be dealing with fevers + seizures= bad days, indefinitely.

The plan for now is to take her in for further testing if/when she runs a fever above 101 for several days with no apparent reason.

They did a few blood tests today to check for possible hidden inflammation some where in her body, but we don't expect to find any.

Our hearts and bodies feel heavy today.  Hoping for an answer or solution to this issue, but instead coming away with more questions.  It is very draining.

Praying for Abby's comfort and trying to surrender all...