Graduation at Last

Tonight Brandon finally graduated from High School.  Well, we are calling it a graduation.  It is actually that he walked across the stage with his peers thanks to a bill requiring schools to recognize all kids at graduation.  Brandon wont receive his certificate of completion until he completes the 19+ or adult transition program and has learned how to transition to being an independent adult.

Tonight Brandon walked across the stage and received his certificate of attendance from Board member Colleen Jones. This was very special to me because Colleen and I served on the Board of Texas Parent to Parent. So it was very touching to have her hand Brandon his certificate. After receiving his certificate, Brandon raised his hands in the air and took a bow and the whole Westlake High School class cheered. It was a special moment I know he will not forget.

Brandon has really been "in school" since birth.  When he was born he stayed in the hospital for over 1 month.  When we came home it was not long before Brandon begin receiving ECI (early childhood intervention) services at home through Easter Seals.  They came several times a week.  Brandon also had private speech therapy.  Brandon also had a nurse come by about once a week through the MAP program to check on him.  Everyone started Brandon on a program to get better.  Lot of hard work building muscle strength, sitting up, working swallowing muscles, cognitive skills, the list goes on and on. 

At 3, Brandon started public school in AISD.  He received great socialization, basic education such as reading and math, a communication device, along with OT, PT and speech therapy.  At grade 1 we moved to Dripping Springs where Brandon went to school until 4th grade.  In 4th grade after a major legal battle with Dripping Springs I removed Brandon from public school and began home schooling him at our house.  I hired a special education teacher and tons of UT students to catch Brandon up on TEKS, help him become proficient on his communication device and determine his exact level of education.  After 18 months Brandon was at the 4th grade levels for English and reading and about the 1st grade level for math.  He was typing full sentences on the communication device and was reading and writing. 

I enrolled Brandon in the Eanes school district where he started in middle school.  Brandon worked very hard all through middle school.  It was during the home school experience when I began to understand the extent of Brandon's learning challenges.  We also found out that Brandon had a visual problem called cortical visual impairment.  This is where the brain interferes with vision. 

We continued with Eanes through High School with Brandon beginning work programs this year, his senior year.  I would like to say it was all easy and time flew by, but for me it was all very hard and time went very slowly.  I think Brandon may think the same thing.  Learning is so much harder for Brandon with all of his challenges due to his health, physical and visual challenges and his cognitive abilities.  Brandon is very smart, it is just his body that holds him back.  He understands everything you and I say.  He just cant respond easily to you and I. 

So for Brandon to be at this point in his life is a major accomplishment.  For Brandon to be able to read, type full sentences on this device, take history classes, participate in film classes, play drums in the school band, sing in the choir, participate in drama, take sign classes, perfect those English classes - those are all very brave things for Brandon.  But completing all those things and making it to graduation with all the surgeries, the seizures, H1N1, the list goes on - is to me inspiring.  It is really hard for me to ever complain about not wanting to do a project or work out in the garden or to move a bunch of boxes when I see Brandon every single day work so hard just to be Brandon and yet really never complain.  He has such a great attitude in life and it is a blessing and an honor having Brandon as my son.  I am really proud of him today with this major milestone in his life - graduation from High School and walking across that stage.

Looking back Brandon has come so far and I would not have wanted to miss a thing.  Congratulations Brandon.

Dr Rummel says - You can do anything for 8 days.

Today I told Brandon that he could do anything for 8 days.  Of course to a kids 8 days seems like a lifetime.  I can understand how 8 days can seem long when you can't eat anything through the mouth and your peers still can.  Smelling all those foods and just wanting that macaroni and cheese when you cant have it is torture.  Brandon had his swallow study and upper GI Friday.  We have had a series of visits with his specialists this week to get the results.  Brandon passed the swallow study but just barely.  The speech therapist said he was at high risk of aspiration.  He also passed the upper GI but "Dr Rummel" does not believe it was read correctly by the radiologist.  The report said Brandon swallowed the barium for the GI study and in fact the barium was put in through the g-tube.  We are re-looking at the results.  "Dr Rummel" does not think he did that well on the upper GI.  The specialists believe Brandon should not eat through the mouth at school - 8 MORE DAYS.  He can eat very safe foods 100% supervised with me at home and pedisasure through the g-tube.  The specialists also are worried about a possible stroke or bells palsy.  We are going to have a MRI to check.  "Dr Rummel" is not as worried about a stroke or bells palsy, but I do think it is a good idea to recheck any brain activity given the uncontrolled seizures Brandon has had over the last year.  Brandon also had another chest x-ray today to see if the pneumonia has cleared and has another appointment with the pulmonologist tomorrow.  OKAY ENOUGH ALREADY.  How do I even work.

Anyway, bottom line - Brandon will be heavily restricted in food choices over the summer with hopes his lungs will clear and his swallowing will improve.  "Dr Rummel" has high hopes he will be back to 100% by the end of the summer if not before.  I have had a discovery of a few new devices to help with checking Brandon's lungs.  Seventeen years ago I received a pulse oximeter for Brandon that weighs about 10 pounds.  They now have a new, portable, electronic pulse oximeter that fits on the finger and provides plenty of information.  The one I bought is about $100 and well worth it.  I am loving that.

For Brandon it probably feels like a lifetime without his favorite choices for now.  As a mom who hates having to make those mom choices- for now no food at school, very limited food through the mouth with 100% supervision and lots of love and support for Brandon this summer. 

We have lots more to share in the coming weeks about Brandon's transition, but for now - just lots of hugs and kisses. 
More later
Leah

My little Foodie

Brandon at feeding therapy

When Brandon was born, he did not have all the natural reflexes that most kids have at birth.  He had no ability to suck and no ability to swallow.  He had no ability to gag when something went into his mouth.  He did not have any of these natural abilities.  But of course everyone wants their kid to eat and thrive.  So for 4 years Brandon had intensive "feeding therapy".   Leaving the hospital after birth we had a therapist come several times a week to help strengthen muscles, help develop a swallow and try to help develop some gag reflex.  But by the end of the year we were not successful.  Brandon had lost so much weight from being tube fed down his throat that we had to make the decision to have a g-tube placed in the stomach and at the same time have a surgery called a fundoplication.  The surgery does not allow food to go directly down to the stomach helping ease any reflux that kids may have.  However, the surgery is a major surgery and most kids end up in ICU to recover.  Brandon was in the hospital for several weeks trying to recover from both procedures. 

After placement of the g-tube, we went to a feeding specialist team in Houston and a team in Austin to start a feeding program to again develop his ability to eat food through the mouth.  We did this intensive therapy for 3 more years.  But again Brandon was not actually eating anything through his mouth. 

I bought some land in Dripping Springs when Brandon turned 1 with plans to build a house.  Brandon and I went to the land every weekend to work for several years getting it ready to build.  One day we were by the creek.  I brought some juice to drink and left the bottle next to Brandon.  While we were sitting by the creek Brandon grabbed the juice and tried to drink.  He would not let go.  He was clearly telling me he wanted to drink through the mouth.  I decided that 4 years had been long enough.  I asked all the therapists to meet with me and decide how we were going to get Brandon eating within the next year.  Every year I take on one big issue with Brandon and decide even though there are many issues we could address, I would 100% concentrate on trying to tackle one.  So this was the year of trying to get Brandon to eat. 

After getting all the therapists in one room, we decided if this was going to happen, Brandon needed to be admitted into the rehabilitation hospital and have intensive therapy.  The plan was to have him inpatient for at least 1 month.  So Brandon and I packed up our stuff and started the month long hospitalization.  It was gruelling.  Intensive therapy all day for Brandon, building strength, building his swallow and trying different foods.  But by the end of the month Brandon was eating about 18 ounces of food safely through his mouth.  His favorite was chocolate pudding.  He was a mess but there was not a dry eye in the place when he finally could get the taste of food in his mouth.  Brandon loved it and finally knew what he was missing.  Imagine not tasting anything through your mouth for your entire life, but smelling food and watching other people eat. 

We had to be very careful the next few years to build his strength in swallowing, build the amount he was intaking and with a goal to have Brandon eating enough food to maintain his weight and thrive.  We worked as a team with his school, his aides, his therapists, his doctors to make this transition a success.  Finally around age 6, Brandon was eating enough food to maintain his weight and loving it.  However, because we had to be careful of what types of food his could eat his diet was not meeting all his nutrition needs.  Therefore, Brandon also learned to drink Pediasure to supplement the unusual diet of peanut butter, chocolate pudding, mac and cheese and goldfish.  Brandon learned more and more food choices for the next few years. 

When Brandon was in 3rd grade.  I received and emergency call from the school that they had just called 911 and that Brandon had choked.  They were trying to perform the heimlich on Brandon and were waiting for the ambulance.  I headed to the school to meet EMS and found Brandon now breathing, but it was clear that he had aspirated on his food.  EMS and the school revived Brandon.  I took him home and he started getting worse from the aspiration and we ended up in the ER.  The next week we did a swallow study to see if there was any damage from the lifesaving treatment from EMS and the school, and if there were any changes in his ability to swallow.   Brandon flunked the swallow study.  For the next year we had to go back to 100% food intake through the g-tube again.  Brandon was very unhappy and was motivated to strengthen his swallow and get back to eatting.  After another year of intensive therapy Brandon again started eatting through the mouth safely.  But I had some frank conversations with his specialists.  The safest thing for Brandon would be for him to never eat through the mouth again.  However, there are some quality of life issues involved.  Brandon really loves food.  Brandon would be really unhappy never having anymore food through the mouth.  So I made one of those parent decisions (you know the ones that you hope are right) and decided "quality of life" over safety.  I stopped focusing on making sure Brandon has every nutrition group.  I stopped worrying whether Brandon should or should not drink Pediasure.  I just decided Brandon could eat whatever he wanted to eat either through the mouth or through the g-tube.  I would supplement for nutrition with pediasure.  This was really about what Brandon wants. 

Brandon is now 18 and after my visits this week with the pulmonologist and the pastroentolgist everyone is again concerned that Brandon is aspirating.  He does have many of the symptons.  Respiratory issues, frequent pneumonia without major temperature, having loss of air at certain times and now three times Brandon has had very low oxygen rates.  The doctors have asked me to stop feeding Brandon through the mouth until we can do some more testing.  Those will happen next week.  We are hoping Brandon's lungs can recover long enough so that he can resume eating, but at this point we really dont have many answers.  I am hoping as a mom I dont have to make that decision one more time about "quality of life" vs "safety".  you know those parent decisons that you hope are right.  I also will feel bad this week for Brandon that he cannot eat food through the mouth for another week. 

I have to give a big thanks to Holly and Marissa, Brandon's school nurses for helping us through all of this the last few months.  Without them I am not sure what I would do. 

So think good thoughts for his test next week.  We will send an update soon.

Leah