Wednesday, November 23, 2011

Orthopedic clinic

Yesterday Abby had her yearly orthopedic check up.  We got x-rays of her hips to take with us.  He usually checks her hips, the tightness in her legs and her back to see if there are any changes.  We also get our scrips for new orthotics when we see him.

This year he noticed on her x-rays that her hips are slowly starting to come out of joint.  It's a common problem with people living with CP.  He told us it can cause pain, especially as the child grows.  There's no amount of stretching, or casting, or special positioning that can stop the progression or improve it.  He said the only way to treat it is with surgery.  At this point he doesn't recommend it for Abby, mostly because he doesn't want to put her through it.

Although I wasn't expecting to get this news, I'm not totally surprised.  Living with cerebral palsy affects every part of one's body.  From head control all the way down to problems with the toes.  He explained that the increased muscle tone in her legs will just cause the leg to be slowly pulled out of socket.

Now we'll need to pay attention to how she reacts to diaper changes and position changes.  It could become painful for her.

Thankfully she has been doing really well lately!  Her seizures are mostly controlled and she seems content again.

One day at a time...

Florida 2011

Last month we had a wonderful time at the beach!  The weather was perfect, the sand was soft and the water was mostly warm.  We spent time digging in the sand, swimming in the pool and hot tub, reading, taking walks down the beach and working a puzzle.

Josiah and aunt Connie did some crafts together, which he loved!  Levi enjoyed being destructive in the sand and surprising everyone with his fearless leaps into the pool.  Abby loved the warm hot tub and bubbles!

It was great to be able to relax and sit down together with no agenda and just visit.

sitting around our camp fire

Thursday, November 17, 2011

Biometric Fingerprints

very excited after our fingerprinting!

Trying to catch up on the events of this past month!  So much has happened.

One huge blessing occurred on our way to Florida (before Abby's event).  We had received our invitation from USCIS (immigration) to come to their office in Birmingham to have our biometric fingerprints taken.  Well, of course the date was set for the week we were going to be enjoying the beach!  This was a big disappointment as we had been waiting for this letter to come in the mail.

We prayed.  We prayed for a solution.  I found a few people on an adoption forum talking about 'walking in' to get their prints done.  So we asked our heavenly Father for the opportunity to walk in to the office in B'ham the day we started our trip, not on our scheduled date.

On October 21st we walked into the office and both got our prints taken, no problem.  As I was sitting in the waiting area the man at the computer told the guard at the door, "no more walk-in's today."  I guess we barely squeezed in!  Praise the Lord!

Tuesday, November 8, 2011

Seizures in paradise

October has become a very special month for our family.  Because of the good prices, and Fall break for Aunt Connie, we all head down to beautiful Florida for our yearly family vacation!  We look forward to this week all year long and always have so much fun together.

It is also (unfortunately) becoming our tradition for Abby to have some sort of crisis on our way to paradise.  For some folks, you might remember our exhausting trip last year where she started getting sick on our way down and had seizures all night in our hotel.  Last year it turned out to be strep throat.

This year we had a de ja vu experience in the same hotel!  Again she started running a fever at bed time and started having seizures.  For the following 4 hours she had some strange, repetitive behavior we weren't familiar with.  After holding her and watching her have these new seizures for 2 hours we finally gave in and administered her emergency seizure med (Diastat).  After 20 minutes or so she started to calm down and finally fell asleep.

With the room quiet again I just laid in bed, listening to her breathe.  After 2 hours had passed and I was starting to get dizzy with fatigue, she woke up and started back into her strange behavior pattern.  At that point I knew something needed to happen.  So in our typical, familiar, half-panic mode we talked with our neurologists' nurse who instructed us to take her to the ER.

At 4 in the morning we loaded up our many bags and 3 small children to drive the 1.5 hours back to Children's hospital.  As expected Abby went through the typical pokes, prods, caths, x-rays and CT scan in search of a cause.  Everything was fine.  Shunt looked good.  She finally conked out after all was said and done in the ER and slept.

To top off this 'special' day Levi fell in a wagon at the hospital and chipped his two front teeth.

This was the start to a very long trip, but what turned out to be an amazing family vacation.  

Sunday, November 6, 2011

Hearing test

Several weeks ago Abby had another hearing test, a repeat of the main test she had when she was just released from the NICU at six months old.

The typical hearing testing done on kids her age involve a sound booth, and the use of toys and lights to see what they can hear.  This doesn't really work for Abby and is very difficult to determine what she hears or doesn't hear so that her audiologist can program her hearing aids appropriately.

Since it's been about 6 years since she has had one, we felt it was time to do another ABR test:  Auditory Brainstem Response.  She had electrodes on her head hooked to a machine/computer.  Sounds were given through a tiny earphone placed inside her ears.  When a sound was presented the machine measured her brain's response and the audiologist is able to determine how soft or loud the sound needs to be in a certain frequency for her brain to give a response.

Overall this took about 3 hours.  As the audiologist read her results she stated that Abby's brain responses weren't typical and that she 'dances to her own tune'.   If only I had a dollar for every time I've heard that!

The good news is that her hearing doesn't appear to have gotten worse, which can happen.  She has a sloping severe to profound hearing loss, meaning she hears slightly better in the higher frequencies (4000 htz), creating an upward "sloping" picture on an audiogram.

To give a comparison:  typical children can hear as low as 5-15 decibels.  Abby's test showed she can hear in the 80-95 db range (500-2000 hz) with a slight rise to 65 db at 4000 hz.

Below is an Audiogram that shows on a graph what we typically hear at what frequency and decibel.

More about ABR testing for those interested: