6 March 2009
We have done some research and have decided to try the VNS for Mackenzie. This device is similar to a pacemaker and is attached to the vagal nerve in the neck area. The device will intermittently send electrical pulses through the vagal nerve. The result should be a reduction (or if we are lucky, an elimination) of seizure activity.
Mackenzie is scheduled for this outpatient surgery on 12 March 2009. With no complications we should return home later the same day.
This past year, Mackenzie's seizures have undergone significant changes. However, currently they are much less severe than what we saw the first 3 years following the incident and she has been off all anti-seizure medication since October 2008.
10 March 2009
Got news today that our insurance company (Tricare/TriWest) has not approved the implantation device (VNS). So for now, while we appeal their decision, the VNS for Mackenzie has been put on hold.
23 March 2009
Mackenzie's VNS implant surgery has been approved by insurance and is rescheduled for 2 April 2009.
January 2009
Happy New Year.
We celebrated the holidays at home again this year. Mackenzie was happy Christmas Eve and didn't want to go to sleep. She was happy and smiling all of Christmas Day as well.
The day after Christmas Mackenzie's cousins arrived (from Oregon) for a week long visit. She was so excited to see them. We then spent the weekend at Keystone Colorado so that Mackenzie's sister and the cousins could do some snow skiing. It was a fun weekend. Mackenzie and I enjoyed watching her cousins learn to ski for the first time.
We hope everyone had a wonderful holiday season and we wish the best for all in the new year.
November 2008
Tomorrow is Mackenzie's 8th birthday. We held a party for her over the weekend at the local bowling alley. It was a success even though Mackenzie had a really bad cold that day. She really enjoyed spending the day with her friends and family.In mid-October Mackenzie had the flu for about a week. The seizure have significantly decreased since then. This happened once before (back in March she was ill for a week and the seizures disappeared for a month and a half) and we are certain that the seizures will return this time as well.
In the meantime, she is completely off all anti-seizure medication and it has drastically changed her attitude. She is happy most of the time, smiling and even laughing more frequently than with the medications. In addition, she is more alert and aware of her surroundings. In therapy, she is taking some amazing steps (the best we have ever seen) and she is learning to grasp objects with her hands.
We have been getting new equipment these past few months. We got an exercise mat and bolster for home use as well as a new chair (The Up-Down Chair) for her to use at home. The up down chair allows us to sit her at floor level or at the kitchen bar level. In addition, she was quickly outgrowing her wheelchair and developing spine curvature and hip displacement - so we got her a new wheelchair.
Back in July we ordered an accessible van for Mackenzie. We had been using a child car seat and lifting her into the vehicle and then lifting the wheelchair into the back of th vehicle. With her growth, the space was decreasing and the weight was increasing. So we decided on a full size van with a lift. We also had four-wheel drive installed because of the area in which we live.
September 2008
Mackenzie started 2nd grade as soon as we returned home from Ability Camp. She really enjoys being around the other students and smiles often in class.
We have begun to notice changes in her since the hyberbaric oxygen treatment (HBOT). Her physical therapist reports a noticable decrease in the tone in her legs, meaning that her legs are more loose and able to function normally. Her sit-to-stand routine has improved as well as her grip (holding of objects).
Most noticable is Mackenzie's ability to walk. She can now take nearly perfect steps while being supported around the upper torso. In addition, Mackenzie has taken an active role in using her communication device. Lately there has been a marked improvement with the use of her talker to participate in conversions around her. However, this past week her use of the talker has decreased while she focuses more on gross motor skills, such as walking and grasping objects.
We are all very excited and extremely proud of her.
The seizures have not changed in duration or frequency. We are looking into our options for different medications and/or the Vagas Nerve Stimulator to get her seizures more under control.
3 August 2008
We have returned to Ability Camp in Ontario Canada. We left home on the evening of the 31st and arrived this afternoon at the camp. It was a VERY long and exhausting drive. Mackenzie started out doing just fine, but sometime in day two she had enough of being in the carseat and began whining. I really hate it when she is unhappy.
After we arrived she relaxed on her back for several hours and has since found her smile again.
This place looks much different in the summer time (without all the snow). The little town of Picton is over-run with tourists and the weather is much more humid than I have become accustomed to in Colorado. We will be here 3 weeks and then we start the dreaded trip home. Stay tuned for more updates.
7 August 2008
We are doing well here at Ability Camp. Mackenzie is happy and smiling all the time. Yesterday we took a stroll to see the lake. Lake Ontario is only about 1/2 mile from the camp.
We are doing two hyperbaric oxygen sessions per day. We are also working on eating by mouth and toilet training. So far we have had little progress with either. We are hoping to start a feeding therapy program when we return home.
Thank you to everyone for your wonderful comments and guest book entries. We miss you all.
15 August 2008
One week remaining here at Ability Camp. We are doing great and making new friends. We are not looking forward to the drive back to Colorado, but we plan to visit some friends along the way. Mackenzie will start the 2nd grade as soon as we get back home (she is missing the first week of school).
I know that Mackenzie is excited to get back to school and see all her friends again.
28 August 2008
We arrived home safe from our journey to Picton Ontario. I was a long and exhausting drive, but we had a nice visit with friends in Ohio. Mackenzie and mommy made new friends at Ability Camp and got to reconnect with friends from previous camp stays.Mackenzie did very well with the Hyberbaric Oxygen treatment again. She is now up to 80 treatments. I would like to reach 200 treatments. We have seen no significant changes since the treatments, but any change, resulting from the HBOT, can take a few months to occur. We are not expecting any miracles from this therapy, we only wish to give her every opportunity to heal. Other the cost, there is no negative side effect from this treatment.
July 2008
In May, Mackenzie had to have a baby tooth pulled out due to an infection. The dentist said the infection could have been caused by a blow to the chin. With her seizures she is always dropping her head painfully hard onto her knees or whatever other surface may be there.
July brought an unexpected visit from family this month. They only stayed for the day, but we all (especially Mackenzie) enjoyed their visit.
We are planning to return to Ability Camp this August but will not participate in the conductive education therapy due to Mackenzie’s seizures. She will be doing 3 weeks of hyperbaric oxygen therapy.
April 2008
Mackenzie played the piano. The keys were marked with princess stickers and the therapist held up a paper with princess stickers on it. Her job was to look at the paper and hit the corresponding key on the keyboard.
In March we took a road-trip to the Northwest. Mackenzie was sick the entire week that we were in Washington. We the fever and the vomiting ended – so did the seizures. We didn’t see even one seizure from the middle of March until the beginning of May. We don’t know why they went away or what made them return. Unfortunately, the seizures that returned are stronger in intensity and frequency than the seizures that she has been having for the past 3 years.
April brought puppies and a tricycle. Mackenzie’s dog had 4 adorable puppies and she was placed on the AMBUCS tricycle wish list and received an adaptive tricycle from an anonymous donor. She wasn’t on the list very long (maybe a few weeks) when we heard the news. Mackenzie also found her laugh in April. She just started laughing one evening and continued on and off all night (until she was asleep). We were all so excited to see and hear her laugh again.
January 15, 2008
Family and Friends
In December of 2006 we were given permission by Mackenzie’s neurologist to decrease her medications in hope of eventually stopping them altogether. Also in December, we discovered “Ability Camp” by searching Hyperbaric Oxygen Treatment (HBOT) on the internet. We registered Mackenzie and were on our way to Picton Ontario (Canada) by the end of January 2007. Ability Camp is a 5 week program of intensive HBOT and conductive education therapy and is located near Picton Ontario (Canada). It was a good program and we made some good friends, but it was COLD and SNOWED a bunch. Some of the noticeable results after 5 weeks at the camp include: Mackenzie’s trunk control improved and her muscles (most notably her hands) were much looser than they were before the treatment. I was also impressed with how well Mackenzie did on the car trip to and from the camp. It wasn’t nearly as difficult as I expected it to be on her. We plan to return to the camp in August of 2008. had a busy 2007.
In May we took a road trip to Washington DC via Gettysburg. In DC we had lunch/dinner with a few astronauts and toured the Capitol and the city monuments. We even met up with Mackenzie’s first Physical Therapist who had moved to DC a year earlier. It was very exciting.
had a busy 2007.
July brought another round of horse therapy our way. Mackenzie really enjoys the horses and the volunteers are wonderful individuals. Mackenzie repeatedly expressed excitement and an eagerness to get out of the truck on our weekly visits.
Mackenzie’s computerized talker arrived in August. She can use either touch or head movement to activate the talker, however, currently we are seeing more accuracy with the head movement. A very small reflective sticker is placed on Mackenzie’s forehead between her eyebrows. The talker is then able to ‘see’ the reflection and ‘know’ where she is looking. She still needs lots of work on using this device, but she is steadily improving.
Also in August Mackenzie’s father retired from 20+ years in the US Air Force and we relocated far away from Ohio. Again Mackenzie did extremely well with the long road trip. We purchased some acreage in Colorado and had a small wheelchair accessible home built quickly to accommodate Mackenzie (and us because she is now too big to be carried up the stairs). We are planning a larger home to be built in the next two years, with dedicated therapy space and other features to help accommodate Mackenzie for life, if necessary. Our builder is great and has experience in accessible construction. They have also won many national level awards for their work in building and remodeling. They can be found at www.ABD-ltd.com.
Because Colorado is such a wonderful place to live, we were excited and fortunate in that Mackenzie’s communication device therapist also elected to move out here. She now runs her own business, and her website is www.InspiringTalkers.com. She lives about 30 minutes from us and still works with Mackenzie each week. Mackenzie loves her and her children. We are glad that they are here with us.
Her new school is a big change for her, but I know that she really enjoys it. She is ‘mainstreamed’ into a regular first grade classroom. She loves the other children and they all really enjoy her. The teachers, the aides, and the school therapists are so wonderful. The enthusiasm that they have toward Mackenzie and helping her to fit in with the other children is amazing. The school district is one of the main reasons that we chose to retire to this area – and we are so grateful to them for all that they do for Mackenzie.
Because she enjoyed the therapeutic riding so much, Mackenzie got her own horse in September. His name is Charlie Brown and he is a 20 something year old Quarter horse. He spent most of his life on a guest ranch as a trail horse. Although he was often rode daily by complete strangers, he is such a gentle horse that he built up a devoted following of fans. Since he is older, and the winters above 8000 feet at the ranch were a little harsh for him at that age, the owners were looking for a more suitable home for his retirement. He is the most patient and gentle horse and is just perfect for Mackenzie to ride with her daddy. The wonderful people at Charlie’s former home can be found online at www.TipTopRanch.com.
We took another road trip in September to see Mount Rushmore in South Dakota and Devil’s Tower in Wyoming. It was a good trip and Mackenzie enjoyed getting out of the house. As of September, she is completely off all of the anti-seizure medication and more aware and alert than she ever was while on the medication. She is more accurately making choices with eye gaze and even occasionally with her arms. She still has difficulty getting her arms to do what she wants, but she is trying really hard. She is extremely opinionated. She may not speak to us, but she has ways of expressing herself. She lets us know when she is tired, hungry, bored, etc.
Her new therapists are wonderful and she gets music therapy with physical therapy and occupational therapy. She really enjoys working with the music in the background. She is taking more steps, better steps, and faster steps than she has in the past.
For Halloween her daddy built her a pumpkin carriage, complete with battery operated lights, and she went as Cinderella. She had the most popular costume in her school.
December brought visits from all the grandparents (although not at the same time thankfully). Christmas was, as usual, difficult on us because we miss the way she used to be so much. Still, Mackenzie had a good Christmas. She got to see her grandparents and she got lots of great gifts from all her loved ones. After a two week break from school, she was eager to get back to her friends (and get out of the house again).
And finally for January, the latest news is that her Speech and Occupational therapists have noticed she is beginning to nod her head yes, and shake her head no. It is very slight, but they believe it is purposeful and appropriate. When we mentioned this to her teachers and aides at school, they said they thought they had noticed it too. It is great to see some more progress like this, and even better to get independent confirmation.
Well, that’s all for now. As you can see, 2007 was a very busy year, but 2008 is shaping up to be just as busy, with lots of new experiences and travel. Please continue to keep Mackenzie in your hearts, thoughts, and prayers.
October 11, 2006The past several months have brought a lot of activity and some changes. First, we were offered the opportunity to have respite care (nursing assistance for Keni) at our home for some hours each week. This didn’t work out yet since both showed up at the home expecting a bedridden and comatose child that would merely need to have machines monitored. Both were quite surprised to find a kid that wanted interaction, help standing, walks around the neighborhood in her stroller, and other constant attention. One had even showed up with a book she thought she would be able to read on duty, which is one reason Keni is in the shape she is in today—someone reading a book instead of paying attention to the kids they are supposed to be supervising! Anyway, we spoke at length with the agency, and determined if these were representative of the care they would be sending over, we’d find another agency. This is ongoing today.
The initial media coverage broke in May of this year. It was the intention of Howard Nathan of Dayton’s WDTN to get Keni’s story of near-drowning on the air at the beginning of the swimming season. They showed undercover video footage of individuals at the pool of the Fairborn YMCA playing on their cell phones when they should have been watching children in the pool. This is nearly 18 months after Mackenzie’s incident, and after several court depositions showing very little, if anything had changed. Reported everyone involved was asked to depart. I attribute this completely to the news coverage. Now Howard Nathan has asked to do a follow-up on Mackenzie’s progress. He filmed her and interviewed us this past week, and should air the next story within a month. He’s also found that during recent state inspections, the Fairborn YMCA is still non-compliant in many areas of child safety, so it will be interesting to see how that plays out in the media again. On a brighter note, Howard mentioned that he could see a lot of progress in Mackenzie since the last time he saw her back in the spring.
Mackenzie continues to grow like a weed. We’ve had to make changes to her wheelchair to keep up with her longer legs. She has her first two loose baby teeth (lower front) and has recently begun Kindergarten. This was a difficult time for us. With memories of her sister bounding into class all excited six years ago, and all the healthy children hugging their parents and running into school now, it’s just really hard to push that wheelchair into school and wish her a good day. Mackenzie does seem to enjoy being around the other children, and with the recent changes in her behavior (I’ll go into that momentarily) we really believe she is still in there trying to get out, so maybe some of this educational activity will help stimulate her brain. The teachers and all the children simply adore her, so clearly some of that bright spark she used to possess is still in there, struggling to get out.
As far as her behavioral changes go, at the suggestion of her rehab physician, we began a trial of Provigil as a brain stimulant. She seemed to perk up a bit, and eventually we increased the medication. She has responded by being much more awake and alert throughout the day. She smiles often and her visual tracking has improved substantially. Additionally, she occasionally delights us with a giggle or a laugh, sometimes to a tickle, or sometimes when something just strikes her as funny. It is so good to finally hear that again. The first time, it was loud enough that her mother could hear it from downstairs, and she had to come running just to see if it was what she thought it was. It had been a year and a half since we had heard Mackenzie laugh. It is wonderful that it seems to be occurring more regularly as time goes by. It’s just another sign that she is still in there.
Three weeks ago, we began some interesting new therapy at the Therapeutic Riding Institute in Dayton. They take disabled children on horseback, with volunteer assistance, and get them used to a wholly different kind of sensory stimulus. The kids are suddenly forced to use muscles to balance and do simple tasks while the rhythmic moves of the horse keep them in constant motion. It wears her out, but Keni gets really big smiles when we tell her she gets to go ride her horse again. Howard Nathan was there to film her last week, and he said he and his photographer thought they heard her telling the therapist to stop when she was tickling her with a feather duster. Although she still is incapable of speaking, she is more vocal with each passing month. We think she’ll eventually get there.
Now on to her rigorous therapy; she is still getting Physical, Occupational, and Speech Therapy several times a week each. She has been working on balance and trunk control, as well as bearing weight thorough her arms. In speech, she has made a choice that she doesn’t want to work with switches, but she is willing to mimic sounds and exercise her vocal cords. This is great; we would much rather get her voice back. As she is showing signs of responding to command more lately, they have recommended that Mackenzie be reevaluated for inpatient therapy, which would be far more intensive. This past Saturday, during a routine follow-up with her rehab doctor in Cincinnati, the doctor agreed we could try a two week readmission and see how it goes. This may happen in November, but there is a lot of paperwork and insurance approval needed before it is a sure thing. We’ll keep you posted.
April 27, 2006It's been a very busy couple of months since the last update. The holidays were very difficult for us, especially since our beautiful little girl had been so different just a year ago. This past Christmas, Mackenzie seemed completely indifferent to the gifts and other activities that had her singing, dancing, and laughing constantly during Christmas of 2004. It was an extremely depressing time for us all. We felt that if we could just make it to the New Year, maybe things would start looking up - but they didn't.
Mackenzie has been on several medications to try to help her brain recover from the damage inflicted by the lack of oxygen she sustained while at the hands of the YMCA. Unfortunately, she began having serious side effects from one of the medications. In January, she began a serious downhill slide. She was constantly feverish and nauseated, sleeping throughout the day, and pretty much unresponsive. It took a while, but the doctor figured out one of the medications she was taking was causing toxicity.
She was taken off the Depakene and almost immediately showed signs of improvement. Suddenly she was wide awake and alert throughout most of the day. She is now taking a Topomax and Lamictal combination which she apparently tolerates much better. Along with the change in medication her appetite increased substantially. Despite the fact she is currently taking most of her nutrition via her stomach tube, she does occasionally eat small amounts of food we offer her by mouth, and she has gained a healthy 5 pounds.
In February and March, the issue seemed to be that she no longer wanted to participate in occupational and physical therapy. Along with her new alertness there seemed to be a newfound stubbornness. She simply didn’t want to do the therapy. She cried and screamed whenever she was there, and it simply breaks our heart for her to go through this 'torture'. Her doctor ruled out any new injury, and pronounced her in generally good health, other than the brain injury. He finally told us that it is likely that Mackenzie is just protesting the therapy because it is very difficult for her, and like most typical 5-year-olds, she doesn’t want to do something so hard.
However, it is important for her to continue to go, because only through retraining and repetition is there any hope of her regaining functional use of her arms and legs. Otherwise, the muscles will grow tight and useless. Now, she can be completely relaxed in the therapy room, but if she sees the therapist come in and sit down beside her, she gets upset. It’s yet another indication that she knows what is going on around her.
April has been busy too. Howard Nathan of the local NBC television station interviewed us for a news segment to be aired in late May. It will be a warning to parents to be aware of what is going on at places like the YMCA where they would typically trust their children would be well cared for. It will also expose that the YMCA was not and is not still following state regulations for the supervision of children. The interview was hard to do, but it is our hope that if we can save even one family from going through what we’ve been through with Mackenzie, it will be worth it.
Now as we move into May, we are still very busy trying to get Mackenzie the best care we can. In three weeks we will have seen three different specialists (two neurologists and one rehab physician). The neurologists are always difficult to pin down as far as potential recovery is concerned. Her primary neurologist said it would be reasonable to expect her to continue making the progress she is making now. Even though it is slow progress, at least we are still moving in the right direction. He also cautioned us not to get so involved in therapy and doctors visits that we forget to take time to enjoy Mackenzie the way she is now. He doesn’t think we are at that point yet, but he has seen many a family go down that path. We also saw a new neurologist (for a second opinion). He confirmed our current treatment plan is reasonable, but suggested a vision therapy and possibly a new medication. He said that patients experiencing brain injuries similar to Mackenzie’s typically may have ongoing problems with speech and motor skills, but as many of her doctors attest to, Mackenzie has been anything but typical so far.
He also said it was more the control and vision areas of the brain that were affected, not necessarily the areas responsible for intellect. This confirms what we suspected; she is in there trying to get out. He also indicated that a brain injury such as this would probably only result from oxygen deprivation of five minutes or more. It’s a shame to think of our precious Mackenzie lying face down in the pool while her brain was dying from lack of air. All because a lifeguard wasn’t paying attention (what was he doing for that long) and a preschool teacher read a book outside the pool area in defiance of state guidelines.
On Monday we follow-up with her rehab physician, whom she hasn’t seen since January. Other people that haven’t seen Mackenzie in a while comment on how good she looks, so it will be interesting to see what she has to say.
While Mackenzie may not be speaking yet, we remain hopeful that we will get to that point in the near future. We are confident that this special little girl is destined for something great, and perhaps this experience will give her the strength to deal with something important in her future. And perhaps the best hint at better things to come, she is beginning to show us her smile, and an occasional small laugh.
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. 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.
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.
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.
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 an
increase 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
own.
April 24, 2005
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.
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.
As you can tell in the picture taken just moments ago, Mackenzie is thinking hard about getting better. Just tonight, we've achieved a consistent "blink to threat" at both close range and from a distance. In other words, she can see us waving our fingers (or arms) towards her and blinks in response, and tonight, its pretty much every time, rather than occasionally. Also, she seems to be checking out her knees, head, and bonking her nose with her hands on her own, and she is not as jumpy to noise. She seems calm and thoughtful. I think she is completely aware, and just trying to figure out how to get everything working now.
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.