Sunday, November 20, 2005

2005 November

Nov 20, 2005

Dear Friends and Family:

Mackenzie's progress continues to be painstakingly slow.  Her physical therapy is where she is currently making the most noticeable gains.

She's made tremendous improvement with some of her abdominal and torso muscular control in the past month. 
With assistance, she can now move from a sitting position to a supported standing position and balance herself in a standing position for short periods, with only minor assistance at the hips or hands.
Just over a month ago, she would simply fold over.  While this is a big improvement, she clearly has a long way to go.  She's still completely dependent for all significant movement.

Unfortunately, she's still not communicating with us.  We now have a new neurologist who has evaluated her condition.  Her latest EEG shows considerable abnormalities. The neurologist is altering her medication in an attempt to help, but it will take at least a month to ramp up the new medication so we can minimize any side effects. 
I believe she's currently fighting confusion and has difficulty with complex thoughts and ideas due to the abnormal electrical activity in her brain.

5th Birthday

This is in addition to the control issues she faces from the damage done by oxygen deprivation. 
She is able to activate toy switches (and occasionally light switches and door buttons) with some consistency, but it is difficult for her.  Hopefully, as the newer medication takes effect, she will make some better progress. 
Once again we have to wait and see.

We had a small gathering on November 6th.  This was Mackenzie's fifth birthday, and a very difficult time for us. 
Seeing her like this, it is hard to believe her fourth birthday party was a roller skating party.  We hope and pray that the next year will be kinder on her than the last one has been.

Thanks for all your continued love and support.

Tuesday, September 13, 2005

2005 September

Sept 13, 2005

Dear Friends, Family, and Mackenzie Fans,

It’s been almost 33 weeks now since Mackenzie’s near-drowning at the hands of the incompetent YMCA preschool, and sadly she is not making the fast recovery we had all hoped and prayed for. 
It has been a long and painful ordeal to make the small improvements we’ve seen so far, and there is little the doctors and neurologists can tell us right now about her future progress. 
She followed up with them earlier this month, and they are encouraged by the fact that she does show continued improvement. 

She is going to have a 24 hour EEG study on 17 October to try to figure out what is going on in her head. 
She continues to have seizure activity related to the injury, and although they are far fewer with her medications, there is some speculation that they or something else may be interrupting her recovery. 
I continue to hold out hope that we can figure out something and get her on the road to a faster recovery. 
In essence, we are still waiting for our miracle.  We’ll have to see what develops.

In the meantime, her head control is almost not an issue any longer, except when she is tired.

We now have a stander at home, and she tolerates standing sessions up to 40 minutes with no complaining. 
It took a few weeks to get to this duration, but she now seems to like it.  We always pep talk her through it, telling her how this should help her to stand, and eventually walk on her own again. 
I think its getting through to her.  It is hard to tell exactly what she does and doesn’t understand. 

She still isn’t talking, and she has great difficulty controlling her body movements.  Her balance is gradually improving. 
Although she cannot yet sit up on her own, she can now hold a sitting position for a short period (sometimes up to 12 seconds) before losing balance.
Physical Therapy with Chrissy Booher

Friday, June 17, 2005

2005 June

17 June 2005

Dear Friends and Family,
Its been 20 weeks yesterday since the incident.  Mackenzie continues to make slow but gradual progress. While she is still not talking, her physical abilities seem to improve noticeably with each passing week. 
Her seizures are much fewer these days with the help of her medication, usually less than 5 per day.

She is visually attentive to things that interest her, like other kids and her new puppy.  She has much better head control, and seems to like standing.
She must be supported during standing, but she locks her knees into position on her own. 
Her balance is off, but with assistance she will stand for 5 to 10 minutes. 
I took her out to the trampoline where she could practice standing with some gentle movement to react to, and she really seemed to enjoy that.

In Physical Therapy, she is still trying to take steps, and we anticipate as her stability, balance, and trunk control improve, this will become more improved and consistent. 
While she is still not capable of getting into a sitting position on her own, if we help her sit up she can sit independently for 5 to 10 seconds before she looses her balance. 
If we can just convince her to use her arms for stability, she'll be sitting independently soon.

She continues to eat solid food, and has for the past week been drinking out of a straw again. 
The amount of liquid she drinks is gradually increasing as she gets the hang of it. 
I would guess she gets about half of her calories by mouth these days.

Keni's puppy, Natasha

Tuesday, May 10, 2005

2005 May

10 May 2005

Dear Family and Friends,

I guess its time for another "Mackenzie Update."  I've been hesitant
to send another because at times it certainly seems she isn't recovering nearly
fast enough, and that's quite depressing to us.  But in the past two weeks
there has been improvement, so here it is...

She wiggles all over the floor, and sometimes changes position/orientation
to see the TV or people, or to kick or hit at objects.  She makes a lot of
noise when she wants to, but as of yet no talking.

She is now opening her mouth to accept food.  She especially seems to like
her old favorites: spaghetti, macaroni and cheese, chicken nuggets and
fries, and many others.  She chews and swallows the food with no problem.
She definitely seems to prefer solids over puree!

She tries to hand a ball from her left hand to her right hand, but often
drops it.  She now finds and holds her hands together in front of her, and
seems to be getting slightly better control of her right hand and arm,
compared to what it has been.

The vomiting is considerably reduced, only one episode in the past two
weeks.  Mackenzie is still battling frequent seizure activity, but with anincrease in her meds, that too is less.  Some days, there is very little
teeth grinding as well.

Mackenzie's head and neck control is much better lately, and her trunk
muscles are strengthening.  Her current Occupational Therapist thinks with
just a little more trunk and arm control she may soon be able to sit on her

Sunday, April 24, 2005

2005 Going home

24 April 2005

Cincinnati Zoo

The big day has finally come and Mackenzie has been discharged from
inpatient rehabilitation.  On Thursday, we left the hospital and came home.
Unfortunately, Mackenzie has not made the miraculous recovery that we had
long hoped for.  Although the doctors and therapists seem to agree that
Mackenzie should be capable of much more, they are not in control of the
timeline.  That part is up to Mackenzie.

The unpredictable nature of hypoxic brain injuries leaves us with more questions than answers.  We have
been assured that this is by far not the end.  We have met other patients
that have gone home from rehab doing very little, yet eventually make great
strides.  We've also been assured that the recovery process goes on for up
to a year and beyond, and although it seems like an eternity, we are still
less than three months into this ordeal.

Furthermore, many patients seem to respond well once they return to home and more familiar surroundings.
We are all going through an adjustment period now that Keni is home.
Mackenzie does seem to know she is home.  She smiles, wiggles around on the
floor, and babbles and makes noise.  She rolls from side to side, and
occasionally onto her belly.
Exploring her tongue

At times, she looks like she is trying to get
up, moving her head and shoulders off the floor in a belly crunching
maneuver.  If we take her hands and pull, she pulls her head up to assist.
She is often content to lie on a blanket so she can wiggle freely, but at
times she fusses until we sit her up.  If we hold her in a sitting position,she holds her head up quite well most of the time.  In her wheelchair, she
prefers to sit upright rather than lie back.  She takes interest in any
activity and also seems to watch TV.

Just this evening, she rolled over completely except for her left arm that
got stuck.  She needed help getting the arm unstuck from under her, but then
relaxed and went to sleep on her belly.

Mackenzie begins outpatient rehab on Tuesday, attending Occupational
Therapy, Physical Therapy, and Speech Therapy at Dayton Children's Hospital.

Friday, March 18, 2005

2005 Hospital updates

16 March 2005

The doctors are weaning Keni off of the anti-convulsion medicene this week.
She has been ill and it has not been decided if she has a bug or if it is a
reaction to the new medication (Amantadine).  She has been vomiting at the
same time each night since Saturday - and yesterday she vomited in the
morning just before noon.

She drank grape juice from a straw today.  She was surprised by a mouth full
of juice - but she did it.

She is scheduled for a swallow study today @ 1300.  We expressed the desire
to try feeding her ourselves from time to time and therefore they scheduled
the test.  The swallow study involves Keni taking in liquids that have
Barium added to them.  Xrays are taken of the liquids as they are swallowed
(actually a video I believe) and the purpose is to ensure that the food and
liquids are going into the stomach and not into the lungs.

Our discharge date has been extended until 6 Apr. 
If she continues to make improvements then it may be extended farther.