The 3rd EEG since July, He's doing good!

The Neuro doctor felt that the blood tests show that Devin had enough of the seizure medication in his body, but decided to do a 2nd EEG because of his restless sleep habits. Devin's 2nd EEG was 2 weeks ago and showed quite a bit of brain activity at night so they wanted to do a 24 hour one that looks for more Epileptic specific information.

The 3rd EEG indicates that Devin has some increased activity during the night compared to the day, but not enough to warrant any changes in medication so they will continue to monitor him more through his psychological evaluations. The prep for this test was the hardest part. The 2nd one was done in an area that they deal more with sleep apnea, so they were not used to dealing with kids and I didn't feel that the results could possibly be very accurate.

Here is a fun picture of Devin playing in leaves after getting off the school bus in the afternoon one day! He really is doing well and loves going to school. He is probably walking better than he has ever walked before with tri-canes. It really helped that we spent all of the summer continuing to do Pediatric PT at Mayo once a week because he would not have gotten any in our community through the school district. In every way, he is a typical 5 year old and pushes the limit every day which unfortunately can also be a symptom of so many things that Spina Bifida children often have so he is under a constant microscope.

MRI Results

The photo is from the Winona County Fair.

Devin had another short seizure last Saturday so they upped his seizure medication. He had a complete MRI today that had been schedules after the first seizure. What they found is that there is a section of his brain that shows up a bit brighter on the MRI (whiter round spots). The Neuro. doctor describes it as thicker (more dense) part of the brain. The normal communication that happens in the brain is disrupted by these areas which then causes a seizure. It is likely that he has had them since birth and that they will not get better but they will also not get worse. The doctor really feels that this type of seizure should be manageable with medication. We just have to get him up to the amount of medication, in his blood system, that is likely to manage them. They did a blood test for this today, but we do not know the results yet. She also looked at how the shunt was working and indicated that the ventricles in Devin's head were stable which in turn indicates that the shunt has been doing it's job. After talking to the doctor about Devin's restless sleep, they now want to do a sleep study to see if the Chiari Malformation, near the base of the brain, which he was born with could be affecting his sleep. If it is, this could also be contributing to the seizure activity. We knew that he had this but did not have a lot of the complications that comes with it.

I've not posted an up-date recently, and thought it might be time to do so as much has happened since the last up-date! Devin had a second surgery on his lower legs in December of 2011 (the same as what he had in April 2010). We have been traveling to Rochester once a week since March for Physical Therapy and I really think it has paid off. He started out using a mobile stander and quickly went back to the walker he had been using prior to surgery. He is currently using the Tri-canes pictured for short distances and his wheelchair to keep up with his peers and siblings for long distance. The Fire Fighters from a local Volunteer Fire Department included Devin and other kids in the fun of using water to push a barrel from one end of a wire to another. This has been a highlight of his summer. On another note, Devin had a "Temporal-lobe Seizure" last Wednesday (June 27th) as he was waking up for the day. It was a bit scary for all of us as we had never dealt with that before and promptly called Mayo Clinic. It turns out that the Mayo nurse we usually deal with was out and it took a while for the message to be routed to Devin's Neuro. doctor. By the end of the day we were in the emergency room at St. Mary's hospital in Rochester. They checked some basic medical stuff and sent us home with a follow-up EEG. After sleep depriving him, Devin had the EEG bright and early this morning. While Devin has learned to be very patient with medical procedures, it tried his patients some. Eventually, he did go to sleep and the technicians found quite a bit of activity in his left frontal lobe. Enough, that they would not send us home without medication for seizures and got him into the already full schedule. The doctor indicated that usually they don't put people on seizure medication until they have at least 2 seizures. In Devin's case, they felt that the one seizure along with the EEG activity was enough to warrant medications and that there was a 90% chance he would have another one if not put on medications. They will be following up with an MMR to see if they can get any other information about the activity happening in the left frontal lobe. We are thankful that this has been caught early and that we are able to continue with some preventative medications. The MMR will also be able to confirm how Devin's shunt is working so this too will be a productive procedure.

A Turkey from Allie to you!

Allie said that she had to work on this during 3 different times at school to get it finished. I guess we're going to have to ask Santa for some real art supplies! She would love an art lesson from any of you Hertzel girls!

Cooper's Football Game

Thought I would try to post links to Sports Teams for the nieces and nephews I know about. Please let us know about any other links to events people are involved in and/or highlights from the events:

Kyle's Football Schedule:
http://www.maxpreps.com/high-schools/a01VbnYkr0CsOlnYb3-gyA/bethlehem-academy-cardinals/football/schedule.htm

Matt's Football Schedule:
http://www.maxpreps.com/high-schools/AF-g_LDkV0-O07qnSVScyw/winona-winhawks/football/schedule.htm

Amy's Cross Country Schedule:
http://www.mshsl.org/mshsl/schoolactpage.asp?actnum=425&school=343

Zach's Conference Basketball Schedule (The rest of the schedule was not available yet):
http://mac-sports.com/SportSelect.dbml?CONF_SCHOOL_ID=15&SPID_1_=3803&SPSID=42973&SPSID_COUNT_=2&SPID=3803&DB_OEM_ID=9400&SPSID_0_=42973&DB_MENU_ID=&SPSID_1_=42973&SPID_0_=3803&SPID_COUNT_=2&IN_SUBSCRIBER_CONTENT=&Q_SEASON=2009

Parents please let me know if these are not the correct links! I just searched for them.

Some times I forget how fortunate we are to have some nice fine arts things going on in our community, until I come home to cars parked on all sides of the road. Tonight is the Minnesota Orchestra free in Lake Park and I don't think, even last year, I have ever seen this many cars on side street.

Even if your not interested in these things this summer, you may want to mark your calendars for next year. Sorry for the the promotional stuff but there were several family I thought might be interested in this information. It doesn't work so well for our kids because of their ages but hopefully it will be something to attend as a family in a couple of years.

The Beethoven Festival
http://www.mnbeethovenfestival.org/index.shtml

Great River Shakespeare Festival
http://grsf.org/

You can sign up for e-mail up-date about Winona at the following web site:
http://www.visitwinona.com/

Mayo Trip

Another good day at Mayo (Devin may not have thought so but we accomplished a lot). Most of the tests were Urology related. Checking to make sure that Devin's system is working to the point that it will NOT cause Kidney failure down the road. For those technological people, they did a urine test, VCU (Urinary X-rays), Urodynamic Study, Ultrasound of the Abdomen and a serious of x-rays of his feet.

We also saw Dr. Sherilyn Driscoll, a Physiatrist in the Pediatric Rehabilitation area. Although Devin was sleeping going into that appointment, by the end of it, he had given her a good idea of what he could do. She was considering twister straps to help with some of Devin's foot turning inward, but recommended we see a PT to confirm this. We extended our day at Mayo in order to see the PT. In the discussion with 2 of the PTs, we touched on all the concerns that have ever been raised by doctors and our own, Birth to 3, PT. I think that we are heading down the right path. Hopefully, having all of these concerns under one system will help to generate discussion as to what is necessary for Devin.

It really looks to me, like most of the discussion comes back to Devin having a lower leg surgery. This surgery will untwist the Tibia. The twisting of the Tibia is common in children before they begin to stand and walk, but it is unlikely that Devin's will self correct because of his muscle imbalance due to Spina Bifida. The concern is that if they perform this surgery too early, it will reoccur. Although Devin has made great stride in his standing and walking, the twisting of his feet does seem to be getting worse instead of better. I am affraid that if we do not correct this now, that he will begin to have problems with his knees as well.

Devin, standing and walking by himself.

Allie keeping the walker straight so that Devin can walk.

We hope to have more answers after the Spina Bifida clinic on July 13.

Cooper participates in Winona's first Kids Triathlon

Right before entering the pool!

Cooper gets on his bike near the building.

Exhaustion sets in after the run!

Allie, Ivy & Keely watch as we await Cooper's turn to begin the race.

(Thanks to my sister Tammy for the assist in getting picutures!)

Matt WDN article

Matt's engineering class at WSHS was featured in a Winona Daily News article on Dec. 24th.  

Allie's Birthday at CEC

Thanksgiving 2008

The Holiday Train comes to Winona!

Halloween Football Fun

Enjoying the season!

Devin's PT came to visit last week and we began the process of standing. I will try to post a picture of this process soon. Essentially, we set him on a stool next to the chair and help him to stand. The first time we did this he was not sure about it, but he does seem to enjoy it the more we do it. It also seems to have encouraged him to do more "tall kneeling". When the PT comes next week, she is planning to bring a "stander" for him. This device will encourage him to stand and support him in the area we currently do with our hands. Little by little he will become stronger so that he does not need the support.


Although you can mostly see yellow and green in this picture, many of the maples have already turned a vibrant red and dropped their leaves and the sumac (which my mother always looked to for the changing of seasons) are a beautiful red.

Don't Blink!

Fall colors in Winona are changing quickly. This picture was taken a couple of days ago and already the scene has changed!

Another ball lover!

Double fisting it, while asleep!

GO HAWKS! Go Matt!

Winhawks are on their way to a winning season. Must be because of their awesome fans!

Goodview Days Parade 2008