A Brandon update

Since my last post, Brandon had his 20th birthday.  Brandon loves this time of year.  It starts with my birthday around Thanksgiving, then Thanksgiving, Brandon's birthday and Christmas.  Brandon does love getting presents, but he also loves all the traditions we have developed over the years and having friends and family around.  We invited Brandon's network, family and a few friends to celebrate Brandon's birthday this year.  It ended with a little impromptu music jam including a little Beatles music. 

Brandon's 20th birthday had special meaning for me.  When Brandon was 8 he had a swallowing accident at school.  EMS was called as was I. We both raced to the school as the teachers and nurses performed CPR.  By the time I got there Brandon was breathing, but had obviously aspirated on food.  This led to a long year where Brandon could no longer take in food or liquids through the mouth.  During the process of meeting with doctors and determining next steps, one of Brandon's doctors told me it was unlikely Brandon would live until age 20.  This was devastating to hear, especially for a mom trying everything for her son to be as healthy and happy as possible.  I took Brandon to several specialist to ask about this prognosis and those I consulted did not agree or disagree with this doctor's opinion.  I decided to ignore the prognosis and move on.  But it has been in the back of my mind for 12 years.  So, it was especially sweet to celebrate Brandon's 20th birthday this year and even more special because Brandon is healthy and happy right now. 
 
We then moved on to Christmas.  Brandon was very excited because we had planned to spend the two weeks he is off from school in Dripping Springs with me.  He was ready for Christmas break and a little mom time.  Plus, Brandon still believes in Santa and he was looking forward to a Beatles Christmas.  We had a great Christmas and Santa came through with those Beatles DVDs and books.  Both my mom and Aunt were able to come over and celebrate Christmas.  They are 91 and 92 and still happy to get out with the family.  My brother Jack came in from Italy and my brother Jim was here as well.  We drove around the Hill Country looking at Christmas lights, watched Christmas movies, listened to a ton of Christmas songs especially Bing Crosby and had a really nice Christmas. 

Our friend Kate and Brandon

 



Jim and Brandon at Christmas

But we were missing Brandon's brother Patrick who is now in Iraq for the next year.  We are hoping he is safe and careful.  And we are very proud of all the work he does with the Air Force.  Care packages will be in his near future. 

A little medical update - We received the results of the sleep study.  Brandon had a normal sleep night for him.  He slept as normal for him until he awoke around 5:00 am.  Brandon's neurologist read the sleep study results and was very surprised.  Brandon did not have one abnormal breathing/sleep/apnea episode the entire night.  Not one.  This is surprising since Brandon has low muscle tone in the trunk of his body, has had seizures the last couple of years and frequently can have congestion.  The neurologist said that it is normal to have up to five episodes in a night.  That is considered normal.  If he and I had a sleep study we would have at least one episode.  For Brandon to have "0" episodes is actually very unusual, but good.  However, Brandon did have an abnormal sleep pattern.  There are several stages of sleep, This is a good overview of the stages.  http://psychology.about.com/od/statesofconsciousness/a/SleepStages.htm.  Brandon went through stage 1 through 4 during the night with some awake episodes which is normal.  But Brandon never went into REM.  Again this was a normal night for Brandon.  I asked the doctor if maybe he just woke up or stopped himself from going into REM.  The doctor said that was impossible and that it is the brain that decides which stage a person is in sleep.  A person cannot alter those patterns.  It also means that Brandon does not dream and it might explain why Brandon had no apnea.  Apnea usually occurs during REM. It also means that Brandon does not organize his thoughts each night.  I am going to read more about sleep patterns, but the results were interesting to me.  Brandon has never had a full night's sleep since he was born and this helps explain why.   AND there is really no treatment. 

Brandon is also undergoing genome testing with the latest tests available in the quest for a diagnosis.  The latest test will look at all of Brandon's genes to determine possible diagnosis, future diagnosis and any carrier information.  I wasn't going to do any additional tests, but Brandon had more chromosome tests come back with abnormal information.  After meeting with Brandon's geneticist, I decided to move forward with the testing. We won't know the results for 4 months. 

As many of you know, Brandon is seizure free since May 2012.  He is also off 2 of his three seizure medicines.  The seizure medicine Brandon is on is Keppra.  Although we like the medicine, it has no liver damage side effects and Brandon has been seizure free; there are a few side effects we are seeing.  Brandon has started to pace (moving regularly) and he is grinding his teeth.  In addition, Brandon is losing weight.  About 2 pounds a month.  Brandon had gained weight while having seizures and on the other medicines,  He is now at a good weight for his size.  But we will have to monitor to make sure he does not lose too much more.  These side effects are all so much better than having uncontrolled seizures.  I wanted to mention this in case someone is thinking of changing seizure medicines. 

We are also working on Brandon's transition plan and I will have more info on this in my next post.  Thats all for now. 

Leah

A Brandon and Patrick Update

Well it has been a while since my last post.  I have caught up on my sleep after coming back from Europe and in full work and Brandon mode.  I miss hanging out on the French Riviera.  What a life that would be.  Ahhh.  But back to Austin.  It has been crazy busy here.  I have been traveling some for work and starting the legislative process of reading all those darn bills.  
Brandon is now in month 4 of transition. In the weeks leading up to the trip to Europe, Brandon was very emotional about me leaving for 11 days with many days of crying and calling his mom.  It was really tough leaving.  But once I left and with a few text messages, Brandon did fairly well.  He was glad I was back and we were back to our routine.  The routine is for Brandon to stay at the condo during the week with Chris his companion while he is at school, and to come to Dripping Springs with me on the weekend.  This is going really well.  Brandon is happy, has not been emotional, and does not object to coming to either place as long as he knows in advance the schedule.  We all spend a great deal of time working on making sure we all have the same schedule.  Brandon has an IPAD and we have loaded Cozi on all of our devices to have a family calendar.  I am learning all his new apps.  I have also downloaded Autismate to see if we can use this app for modules helping Brandon with daily activity chores.  This will be my Christmas break project.  I wish I had a young computer geek hanging out here to help me.  Oh well.  
More good news!  With the help of Brandon’s transition team at UT, Brandon will start a new job at UT in January.  This is great because it meets many of Brandon's work requirements.  He will help sort and deliver mail as his main job and will get a great deal of socialization.  A Win Win for everyone.  We are working hard on Brandon interacting with other people, saying greetings, asking how the other person is doing, etc.  UT has a great environment for Brandon to develop job skills while working on socialization with peers his own age.  He will still continue one day at Seton and we will try to still work at the Beatles Show at Koop.  

Brandon and I went to Dallas over Thanksgiving to see Brandon’s brother Patrick.  I posted on the blog on 10/4/10 about Brandon’s brother Patrick.  Patrick is a really special kid.  Of course I still call him a kid even though he is 30.  Brandon really loves Patrick and so do I.  The day before I left for Europe, Patrick found out that he would be leaving to go to Iraq for military duty for a 1 year tour.  Of course Brandon, Patrick’s mom Peggy and I are all concerned, but we all support Patrick and his commitment to serving his country through the Air Force.  Peggy threw Patrick a great going away party in Dallas and we drove up to be with Patrick.  Brandon has his own way of communicating with Patrick.  I think they both just “get” each other and for Brandon he just wants Patrick near to him.

Patrick and Brandon chillin'

Brandon was glad to see Patrick and did not complain about the drive.  Patrick is also a major Dallas cowboy fan.  I wanted Patrick to have a great week with his mom and his girlfriend Kaitlin.  The company I work for (UnitedHealthcare) managed to get Patrick and Kaitlin great seats for the Thanksgiving Dallas game and I got Patrick, Kaitin and Peggy special passes for the pre-game (the day before) taping for the Red Kettle fundraiser and rehearsal of Kenney Chesney’s half-time show.  They all had a great time and I think it took Patrick’s mind off Iraq at least for a few days.  Here are some pictures.

 Patrick and Kaitlin

Patrick and Kaitlin with Charles Haley (I had to look him up)

We are all so proud of Patrick and hope he is safe during his tour.  I see lots of care packages in his future.  Patrick we love you and already miss you.  Take care of yourself. 

More later

Leah

Transition Week Nine

We are now headed into week 10 of Brandon's transition.  The last few weeks have been crazy.  On Oct the 12th I left Austin for Europe for an 11 day vacation to see my brother and to visit Europe.  I have been wanting to go to Europe to see Jack for several years, but leaving for that long seemed impossible.  I just decided this summer with the new transition plan in place, that I just needed to put it on the books.  October was a great month because it is prior to the legislature bill filing, Brandon would be many weeks into his new living arrangement and it is good timing for work.  But leaving for 11 days was not as easy as I had imagined.

About two weeks prior to leaving, Brandon started having crying episodes and begging me to please not go.  This lasted up until the night before I left.  It was very hard emotionally for both of us.  I explained to him that this was not much different than my business travel, but I was traveling a little further.  We even looked up Beatle information in France and Italy to show him how the Beatles traveled.  Nothing really worked.  I texted Brandon some from France and Italy and texted Chris and Ross.  Brandon really did very well while I was gone and much better now that I have returned.  So we passed this hurdle.  But these things sometimes come in threes or fours.

The night before I left for Paris, I received a call from the assistant living facility where my mom resides (3:30 in the morning).  They were concerned that my mom was not doing well and wanted us to come over and check on her.  It was 3:30 in the morning prior to me leaving for the airport at 8:00 am.  The "we" and "us" in this instance is me and my bother.  I called my brother and asked if he could go over to the facility.  He did.  He got my mom back into bed, but I knew by the end of the weekend she may be hospitalized and Jim would be handling this alone.  This is the bad thing about having a small family.  Sure enough she was hospitalized and had surgery for removal of a tumor in her intestines.  She is 91 so we were not sure she would survive.  She has done fairly week and yesterday we moved her to a skilled nursing facility.  So far so good,  Jim was a rock star brother and son last week. 

When I landed in Paris, my phone rang and it was my Aunt Sue.  She has no kids and Jim and I care for her as well.  I could not get a signal.  I let Jim know and it turned out not to be anything major.

On Thursday prior to leaving, Patrick (Brandon's brother) called me.  He had just received confirmed orders that he is leaving for Iraq for 1 year service.  He is in the Air Force.  I did not want to tell Brandon until I returned.  That would have been too much for him.  Brandon loves his brother and Patrick leaving for Iraq will be difficult for Brandon.  He understands the risks associated with Patrick's travels.  This has been hard for everyone, especially because 1 year is very long.  But we are also proud of Patrick for his service in the Air Force and his commitment to protecting the United States.  We will all miss seeing him but will stay in touch while he is there.

I left Austin with a horrible cold.  I thought I was at the end of it, but I supported the French and Italian pharmacies while I was there to help with the chest congestion and coughing.  I managed to not focus on being sick while I was there.  I went to Europe with friends Kate, Meredith and Karen.  We all had a great time.  Below are a few of the pictures of the trip.

I am back now to turning my attention to those items Brandon will need to focus on for the next year to help with his independence.  We are so lucky to have a great deal of help.  Chris has a list of items we have identified for Brandon at home, UT has a list of items and the school has a list of items.  They are all related and all great for Brandon's success.  When we get the list together I will post in hopes to help other parents think of some ideas for their children transitioning.

All is good for now.

Leah

PARIS FRANCE PICTURES

 NICE FRANCE AND SURROUNDING AREAS PICTURES

ITALY PICTURES

PERINALDO ITALY

 

TRUFFLE FESTIVAL ALBA ITALY

LA MORRA and OTHER ITALY

Transition Week 5

Brandon and I are now 5 weeks into the new living arrangement.  Brandon is living with Chris in Austin at our condo during the week while he is in school and then comes to Dripping Springs on the weekends and spend the weekends with me.  The first three weeks went great.  Brandon was very happy.  In fact, at lunch during one weekend I asked Brandon how he liked the new arrangement.  He said "I don't like it - I LOVE IT, ALL OF IT".  That was great.   I was very happy as well. 

But the 4th week came and Brandon started to realize his mom was not there.  Chris started activity time in the evenings with Brandon and they decided to go bike riding.  Brandon has a three wheeler bike we had fixed before Chris and Brandon moved into the condo.  Brandon was riding on the bike and he fell over as he was going down a hill.  He was scraped up and wanted his mommie.  So Chris and Brandon called me on "facetime".  Brandon was crying.  He calmed down, took a bath and went to bed.  The same day I changed our weekend plans due weekend work which resulted in a 2 day respite weekend and the school changed their plans for fun Friday.  It was all too much for Brandon and on Friday during his time to utilize his IPAD, he and the school called me.  Brandon just started crying and he cried on for a good part of the day.  I decided that Brandon should come home that night and asked my brother to stay with him while I went to a fundraiser.  When I got home Brandon was much better.  We talked throughout the weekend and Brandon asked me if I kicked him out of the house and if he could ever come back.  I KNOW.  Serious guilt.  It really broke my heart and still does.  But I explained to him that the house in Dripping Springs is also his house and he is always able to come to the house.  He asked me about where he would stay on holidays. He also asked if after he finishes school in three years could he come back to Dripping Springs.  I told him as that gets closer in three years we would decide.  I found out from these conversations that I need to be very clear with Brandon on the schedule and try not to have too many unexpected changes.  So we all got out the calendars and went over the next few months with Brandon and we will continue to go over them as much as he needs. 

Brandon also went to the UT Best Buddies matching party.  I think Brandon was very excited to meet his matching buddy, but his matching buddy did not attend the party.  There were may UT students matched with adults and young adults.  I can see that Brandon will eventually love this.  It will be great for working on socialization.  But not all bad.  Brandon met a really sweet girl "Ryan" and she talked to him about leaving her parents and moving to Texas for school.  She told him that was like Brandon moving into the condo for his school.  I think Brandon liked that conversation.  She agreed to email Brandon.  That is a great start. 

Brandon also started his speech therapy at UT.  They did an assessment on Brandon to determine where he is in his speech.  I really was very touched by how far Brandon has come in 19 years.  When Brandon was 4 he barely said one word and I was sitting with Brandon in this room as he read complex questions and provided answers verbally.  Brandon read all the questions easily and correctly.  His responses we mostly understandable.  I think living with Chris and having new people at school has made Brandon understand he needs to try very hard to speak as clearly as possible so people can understand him.  I was so proud of him.  He has really come so far. 

We are moving into week 5 weekend.  I have been incredibly busy traveling for work, taking care of Brandon logistics, getting the house organized and working on my mom's house.  But for the first time in 19 years I am also preparing for a 2 week vacation to Europe to see my brother Jack.  I am going with three girlfriends - going to Paris, Nice France (French Riviera) and Italy.  We will end up at the Truffle Festival in Alba, Italy.  Brandon is all set for a weekend with Ross and a weekend with Chris with a week in-between where I will be gone.  Looking forward to a little time off.

All for now.
Leah

Transition Week Two

Many of you have asked me this week how Brandon is doing as he entered week two of transition.  Thanks for asking.  If you are a parent with a child going off the college or off to work and moving out of the house, you may relate to our transition.  I am happy to report that week 1 and week 2 have been great.  Brandon is very happy. Brandon made it through week one just fine.  He knows everyone at the school and the staff working with him all know and love Brandon.  That has helped tremendously.  The school's adult transition program has also doubled in size and for Brandon that has been good with more classmates for socialization.  Brandon is loves the school environment. Brandon is picked up each morning with his favorite bus driver and the routine is the same as last year.  That has helped.  Ross is with him everyday that Brandon is at school.  Brandon loves Ross and that has helped.  His new companion Chris has a great deal of experience with young adults transitioning and has been very slow to begin the process for Brandon to be more accountable in his life.  That has helped.  Chris's personality is similar to Brandon's (calm and laid back) and that has helped.  And of course there is music.  Chris and Ross are musicians and Brandon loves music.  That has helped.

I wanted to set up a fairly regular schedule with Brandon for the year so he knows what is coming next.  Brandon's speech therapist worked with Brandon to set up a calendar on Brandon's IPAD (his communication device) so he knows what is happening next.  Brandon is happiest when he knows what will happen next and there are no big surprises.

Chris is adjusting to having someone living with him and working with Brandon on privacy and roommate rules.  That is working fairly well. I am still working the daily things as they come up and trying to figure out how those can run smoothly.  These include things like ordering and delivering supplies, ordering and dividing out medications, making sure everyone is where they are supposed to be and communicating with the school/therapist/doctors.  I think this will work itself out as we move into more of a routine.  Brandon is also very happy coming to my house on the weekends and having time for himself during the weekend. 

I know that in order for this arrangement to work Brandon needs to find friends, find his space in the world and know he is valued.  So Brandon also will begin "We are the Chorus" next week so he can participate in music.  He also will begin Special Olympics.  He is participating in a social group on Wednesdays, but he will move into Special Olympics during that time. Brandon is working with the University of Texas Special Education Department.  They will assign a student to work with Brandon and we will want to concentrate on socialization and jobs.  As part of his participation, Brandon will also join Best Buddies UT  (http://www.utbestbuddies.com). I hope he will get some additional social opportunities through the program.  Brandon can also receive additional speech support from the Speech department at UT. 

This week we also focused on jobs.  Brandon had a job last year at Seton.  This is a volunteer job. He started back at this job this week and everyone there was glad to see him.  I will be working to see if we can find other job skills to learn through Seton.  The best news - Brandon was selected to be a volunteer at KOOP radio AND work at the time slot for the Beatles show.  I am hoping that is a great match for Brandon because he loves the Beatles.  Brandon knows every little fact about the Beatles and can name the entire Beatles library.  So this is a really good job match. 

But as a mom, the most important thing for me is that Brandon is happy.  From all reports back to me, everyone says Brandon is happy and that is the best result for me. 

I know many of you have also asked - what about Leah.  Well I am taking the opportunity to again work on getting back in shape and eating healthy.  I have started walking again (I stopped the regular routine this summer) and the goal is to be down 25 pounds by mid-Oct.  I have 7 more to go.   And I am just now starting to think about what will life look like with a little extra time after 19 years. 

We will keep you updated as we work through the transition.  Thanks for all your kind words and support. 
Leah

Transition Day 3

Well I cant believe it.  Brandon is now three days into living with his companion (Chris) and I could not ask for any better.  I took Brandon to the condo on Sunday to prepare for school the next day and for him to live with his companion and work with Ross each school day.  Brandon spent the night Sunday night, went out for supplies and food to prepare for the week and happily went to bed ready for school.  Chris got Brandon up for the morning routine and took him to the bus stop.  The school reported Brandon was happy and engaged.  Chris reported Brandon was happy and Ross reported Brandon was happy.  SO I AM HAPPY. 

I told Chris that Brandon could call me last night.  I was out running errands and rushed back to the house because Brandon is now using FaceTime to call me.  I need WiFi to get a good signal.  I made it back here at 7:45 thinking he would call at 8:00.  A little after 8:00 Chris called and said Brandon told him he was good and didn't need to talk to me.  WHAT.  He doesn't need his mommie!!!!!  I has so happy for Brandon but having mixed feelings for me.  I think we are both transitioning and perhaps Brandon is transitioning better than me.  Tonight I had Brandon call so I could check for myself.  Sure enough.  Brandon as very happy, not agitated and seemed very comfortable in his own home.  I know there will be ups and downs as we continue down this path, but I could not ask for a better start.  Chris thanked me for letting him work with Brandon and I cant thank him enough for being the great guy he is.  It also helps that Brandon's bud Ross is there everyday and many people from the school are the same.  I think it also helped that we lived at the condo for 1 year and had many respite weekends and travel days leaving Brandon with other people on a regular basis.  For him this is the same.  It is also great that Brandon's seizures have stopped.  I think Brandon is very confident with his health at the moment. 

Now we have to work through the logistics of making sure everyone knows the schedule, the updates, having the right supplies and medicines and getting Brandon out in the community.  We already have Brandon ready for "We are the Chorus".  The group will be working on Love Songs.  Brandon has a social Wednesday and soon special Olympics bowling. We also are starting Brandon trying independent tasks such as laundry, making his own food, setting out clothes, shaving and brushing his teeth, etc.  Lots to do and three years before Brandon graduates from school. 

I am also working on trying to get Brandon working at the KOOP.  Brandon will go back to the hospital for work this year, have swimming three times a week and social outings with the school group once a week.  The Adult Transition Program has doubled in size this year with 1/4 of the special education students in the school participating in the Adult Transition Program.  Many challenges for the school.  Next year they will triple in size.  So the more of a routine Brandon can have now, the better. 

A little treat for Brandon.  I bought Beach Boy tickets.  He will love it. 
More later.
Leah

ITS ALL GOOD

Since my last post I have once again realized what a great city we live in.  Austin has a young progressive population and a fabulous workforce.  I was very disappointed at losing the companion I selected for Brandon to live with him during the next school year.  But I managed to move on and start the search all over.  I decided to immediately post an ad and start the friends and family word of mouth search.  I really want to post today to encourage others thinking about that next step with their young adult that this is very doable. I had over 40 qualified responses and at least 10 with fabulous experience and references.  But I decided to go with a personal reference from the prior companion and another aide working with a family friend.  I have hired Chris to live with Brandon next year as his companion.  Chris has previous experience working with young adults 17-23 transitioning and all types of disabilities.  He is also a musician.  His personality is very laid back and kind of goofy.  He is really a perfect match for Brandon. 

Brandon is having a very difficult time these last few weeks preparing for the transition of moving back to the condo.  Brandon rarely gets worked up about anything, except the Beatles (and occasionally Selena Gomez).  But for the last two weeks and during our meeting with Brandon network, he has been very stressed.  Last week Ross (Brandon's current aide during the day) came back from vacation.  I asked Ross to take Brandon somewhere he could relax.  We decided on going to a movie.  When Ross come in to the house, Brandon burst into tears stating he could not leave the house.  He used the excuse that he needed to see a Disney Show.  I can't remember the last time Brandon cried.  Even during H1N1. 

Brandon's brother Patrick came to visit last week.  We had a great visit.  After Patrick left, Brandon sent a message to his brother that he was going to miss mama and he was sad.  So this has not been easy and needless to say it is stressful for everyone.   Last weekend Brandon and his current companion did a respite weekend and has started to relax just a little.  Brandon set up his room and made the condo school ready.  Brandon is still pacing some around the house and asking constantly what is going to happen on each day of the week,  I hope by the end of Sept Brandon will get used to the routine and his stress level will be reduced. 

I have talked endlessly to other parents who have transitioned their young adults to different living situations.  All of them are unique.  One parent told me about her son moving in with another family and they have worked out respite periodically through the month.  One parent has partnered up with another parent and their children live with a companion, with attendants working throughout the day.  Another parent is slowly moving out of her house, leaving her son and his friends to live independently.  The financial portions of these arrangement all are very creative.  For Brandon's new arrangement, Chris will move into the condo as a employee of Brandon's CLASS program and will benefit from free room and board.  Chris will have access to Brandon's minivan (the one I leave for the aides to use when transporting Brandon).  Chris will take over each evening at 7:00 pm from Ross and sleep at the condo with Brandon until Brandon gets on the bus each morning.  This starts each Sunday evening and Fridays after Brandon leaves school he will come to Dripping Springs to spend the weekend with me.  One time per month Chris will provide a respite weekend with Brandon staying with him.  I have three additional attendants as back-up.  In concept it all sounds good.   But Brandon will have a big adjustment to moving away from his mom.  So everyone think good thoughts that this all will work and Brandon will again be happy. 

More good news - A few months ago I participated in a focus group at the University of Texas concerning children transitioning into adult services.  I apparently signed up to volunteer our arrangement for a case study.  Brandon was selected.  So the University of Texas will be studying Brandon's transition this next school year and providing student hours for him to work on socialization, any behavioral issues and working with him on communication in the public. I am very happy to have the extra help.  It takes a village.  We have outlined all the skills Brandon should work on for the next year.  I am looking forward to a more confident, socialized and independent Brandon in the future.  So stay tuned.  ITS ALL GOOD. 

More later
Leah

A little loss of the dream.

It has been a while since I have posted about Brandon's progress with transition.  Transition concerning his jobs and his desire to live as independently as possible.  I was reminded today of all things possible by this great youtube video.  Please take a little time and watch it.  It was very inspiring for me, especially today.  

http://www.youtube.com/watch?v=nivBPmOvviY&feature=share 

We have dreams for our kids.  When those dreams don't quite work we grieve, make adjustments and move forward.  Today my dream for Brandon's independence became diverted.  I really have been depressed all day, if not crying a little.  I found a great companion to work with Brandon during this next school year.  I have been working with him throughout the summer, a couple days a week and a few respite weekends.  The thought was for Brandon to move back into the condo with him in two weeks where Brandon's companion and Brandon would work on independent living, developing friends and becoming more involved in community activities.  The person I have been working with this summer was already experienced and would have been the next best thing to me in that he would move Brandon to that next step of his life.  I was very comfortable with him and Brandon and him have bonded.   But today we both found out that the schedule I need for this to work was not possible with his day job.  So I have decided to post here today because this is part of the transition process.  Finding just that right person to take Brandon to the next step without him being as dependent on me.  I have the loss of my dreams for Brandon today and a feeling a little sorry for all of us.  I know it is a temporary set back and hopefully I will find that right person soon, but it is still a loss for everyone.  

This person I chose as Brandon's companion is referring another possible match, but I will also throw the net wider and repost the position.  Wish us luck with the finding that perfect match and working through this diversion.  

Leah

 

Brandon is officially 40 days completely seizure free, even during 102 fever.  AND only on 1 seizure medication.  You cant ask for any better,  

More later

Leah

I fall for this every time.  During Brandon's hospital stay we decided to take another round looking at Brandon's genetic profile to determine any possible diagnosis.  I was thinking that I am close to giving up on a diagnosis.  In a way it really does not matter, except if his condition is worsening.  Right now Brandon is doing great.  But in the hospital I wasn't sure, soooo I fell for it again and set myself up for another possible diagnosis or issue.  Sure enough, Brandon's doctor called today and they have found a genetic deletion.  One they have not found before.  And one so rare they don't know that it means.

For those of you looking for a diagnosis, I have spent the last 3 years of Brandon's life reviewing genetic information, having more tests performed on Brandon each year as the genetic industry has evolved and finding more possible rare conditions maybe associated with Brandon.  I will add this one to the list.  But it never changes that when I get a new diagnosis or discovery of a new possible condition, I start all over with the loss of dreams for Brandon, anger, depression, searching for what it means and then acceptance.  It is very exhausting.  And today I took another path down this bumpy road.  So I have to whine a little for now.  After I have read every website I can and talked to everyone I know, I will accept and move on.  But after 19 years the process never seems to change.

I think margaritas are in order this evening.

More later
Leah

A little update.  The last week in May Brandon and I spent Tuesday through Thursday at Dell Children's Hospital Epilepsy Monitoring Unit.  We went back early Friday for Brandon's clinical trial visit.  So perfect timing.  It was Brandon's last week at school and a short week for me.

Brandon with therapy dog 

Brandon started out the memorial day weekend with a cold.  I knew it could get worse quick and I didn't want to reschedule the whole week, so thanks to all you mom's for all those cold cures.  I don't know which one did it, but it knocked out Brandon's fever and cold by late Monday (memorial day).  Brandon and I got up at 4:45 am and left for the hospital after the medicine routine around 6:00 am.  Brandon checked in for an MRI under general anesthesia. After the MRI the Epilepsy Unit prepared Brandon for the EEG by placing the nodes on his head.  He went in for the MRI at 7:00 am but the hospital staff didn't call me back until 10:30 am.   We then headed to the hospital room, our home for the next three days.  The good news.  Brandon had no clearly defined seizures, but he had activity indicating he is a strong candidate for seizure activity.  The good news about that, is that Brandon's seizures are now fairly well controlled just on Keppra.  The physicians removed Brandon from all medications except Keppra the first day, then off all medicines.  We decided that Brandon's activity was well controlled with just one drug (Keppra) and the decision was made to remove Brandon from the other two seizure drugs.  Really the only way to take this kind of risk with seizures is in the the hospital.  Brandon has now been seizure free since his release and he is a different kid.  Much more awake and engaged.  

I on the other hand, have just now recovered.  I just cant spend 1 weekend prior to a hospital admission with a sick kid (Brandon), then go inpatient with Brandon for three days and have little sleep.  It really took all my energy.  I remember plenty of 3 week hospital stays with Brandon when he was young with little or no sleep and I seemed to recover much quicker in my 30's.  Now I am in my 50's and the recovery time is much longer.  But it was worth it.  Having Brandon on only one medicine for his seizures is great.  Having him seizure free is even better.  


Getting to the place I am today of understanding the results of this hospital visit was a little challenging.  So, I have to regress here a little.  One of my pet peeves with doctors is their attempt to give you results when you are not 100%.  Over the years I have tried all kinds of tricks to help with this.  I have brought friends with us to listen to the same thing I am listening to.  I have brought a tape recorder.  I have brought a video camera.  Some doctors don't like to have the conversation recorded or they are very careful about what they say when you record.  I have had some of doctors say they don't want to be recorded.  So, Dr Clark choose the last day to discuss the results of the MRI and the EEG.  But I was like a patient who had just come out of anesthesia and the physician wants to talk about the procedure he/she just performed.  I was pretty out of it.

On Friday after the hospital stay we came back to the hospital for a clinic trial visit and I asked for copies of all the tests, read over the reports, googled over the weekend and decided its all good news.  The doctor still wants Brandon to come back for a sleep study because he may have some apnea events at night, but all in all his EEG looks better than any of the EEG's of over 19 years.  The other important thing I try to do over the years, is to keep all important medical documents concerning Brandon myself.  I have books of records from 19 years.  But I have three binders of important records.  These new records will go into the three binders for the future.  And maybe sometime in the near future I will have all of these as an electronic medical record.

Transition news - Brandon and I have moved back into the Dripping Springs house.  We are going back and forth to the condo to clear out enough of my stuff to allow someone to stay with Brandon next year as he transitions to a more independently living arrangement.  Part of the success for living more independent is getting Brandon's seizures under control.  So with his seizures more under control, this will only make transition easier for everyone.

Brandon is at VSA Arts Camp for June and loving making movies and music.

More transition news to come.
Later
Leah