One year since H1N1 but always waiting.

It has been one year since Brandon was released from Dell Children's Hospital from his H1N1 illness.  This weekend we celebrated his one year anniversary with other parents and kids also in ICU during this time at Dell Children's.  I am not sure if Brandon remember much while he was there since he was sleeping most of the time, but Brandon really wanted to go.  They had lots of games and the ACC Jazz Band which was really good.  Brandon loved the band and seemed very happy to be back with everyone.  It is hard to believe it has been a year, but I am glad we have not been back.  For me it was a unpleasant reminder of 10 long days of "camping" in ICU.  It also was a reminder of all the great and dedicated staff that was not going to give up on Brandon.   Many of them were at the event. 

For 17 years there has been many times that we are waiting on the result of some test, waiting to confirm or not confirm a new diagnosis and waiting to go forward with the next test.  As Brandon has gotten older I was hoping this would become less.  Really the waiting is the worst part.  When we started going to Scottish Rite the doctors there were convinced that Brandon had one of several conditions they wanted to go forward with testing.  One was a tumor in the brain, one was a neuromuscular condition, one was a genetic condition.  All of those required months of testing and results.  Even when he was in Dell for H1N1 they wanted to test for kidney failure, internal injuries and infection under his leg cast.  There has been a great deal of waiting over the years.  I have to admit Brandon is great at waiting and I am not good at waiting.  It is really me that spends way too much time thinking about the what if's, looking up what I need to know to ask the right questions with the doctors and worrying about the results.  Many times it turns out to be nothing and sometimes it turns out to be something.  If it is something, I go through the same processes every time with a grieving period, a little sadness and depression, a research mode, coming to terms and learning to be okay with the diagnosis.  Years ago I tired to learn not to dwell on the waiting because really I have no control.  It is better to let go of all the stress and wait until you get the call. If it is nothing you spare yourself all the what if's.  I have gotten a little better on the wait, but I have not been able to not think about it at all. 

Brandon has had a series of little illnesses for the last few months.  The latest being what I thought was a cold.  However, Brandon appeared to be breathing faster than usual and breathing harder.  That sometimes indicates the illness is turning into pneumonia.  I have been all over pneumonia for 17 years and I try to get very aggressive on treatment before it gets bad.  I took Brandon to his PCP last Monday.  She took an x-ray and read it but did not see anything.  We left thinking so far so good.  The next day Brandon's PCP called and said that the radiologist compared the last x-ray shortly after H1N1 and this x-ray and found a nodule on his x-ray.  She said it probably was not cancerous but wanted to call Brandon's specialist to discuss.  That is never a great way to start a conversation and began another waiting game for me.  I looked up lung nodule on the information highway.  A good site. http://www.emedicinehealth.com/solitary_pulmonary_nodule/article_em.htm
Probably the nodule is nothing, but I know that this will be a process of checking the nodule over a period of time to determine what it is.  It probably is not cancerous, but it needs to be checked.  It still is hard not to worry.  Just part of being a mom, but the part I wish I could skip.  Next appointment this Friday. 
Trying not to be a worried mom.
Leah

Looking into the Future

I have really been dreading writing about this topic. But for you other single parents out there that have kids with special needs and a child support order this may help you in the future.  Also, forgive me because I had to get a little technical. 

In my last year of Brandon's transition I have really had to deal with a nagging issue that I have not wanted to tackle now or ever.  Will Brandon need lifelong supports and can Brandon live independently and off of his own income.  Although, I am not sure any parent can answer that question at Brandon's age.  I see friends with adult kids living at home and know they are probably asking the same question.  But in Brandon's case this is more of a lifetime question.  Once you come to terms with the answers, then comes the question of what will happen if I am no longer here to help care for him whether he is living with me or living independently.  Therefore, I have been thinking about all possible funding sources for Brandon in the future to assure Brandon can live as independently as possible and achieve his "good life".  When Brandon turns 18 he will apply for SSI disability benefits.  This will generate $674.00 per month for him to live on.   In addition, Brandon's goal is to work and earn money and as long as he is working SSI gets adjusted accordingly.  SSI is extremely complicated, especially if you have a job.  By the time Brandon begins receiving SSI, I will be an expert - but don't tell anyone.  I will blog on SSI because that is the next thing I will be working on until Brandon's 18th birthday.  I finally decided to hire a little help with the process and it will be well worth it.

Brandon also receives $450 per month in child support.  When Brandon turns 18, the $450 is deducted from the $674.00 in SSI payments and Brandon will therefore still only receive $674.00 - $225.00 in SSI payments and $450 in child support. 

After talking to our Trust lawyer, she suggested to maximize payments and have Brandon's child support paid to a new trust specific for just child support payments.  These payments are made directly for the care of Brandon and are subject to state estate recovery law in the event of Brandon's death.  Any funds not used in the trust for the care of Brandon will be repaid back to the state.  This is a special needs trust which allows Brandon to receive the funds in addition to any SSI.  It also has very strict requirements on what the funds can be used to pay for such as welfare, safety, education and comfort, but cannot pay for anything that would otherwise be paid by a government source or insurance coverage, like medical care.  So with the new trust Brandon would receive $674 plus the child support amount currently $450.  As the trust begins receiving money, any withdrawals will require the trustee to account for the funds and assure that the funds meet the trust requirements. 

There is one catch - the child support order must be modified to pay the trust and not me.  I was told this would be very easy and I could just request the change from the AG's office.  I am always concerned when someone tells me something is really easy and in this case it has been anything but easy.  However, I dedicated this year to getting everything set up for Brandon to transition and to allow him to be independent.  This is just one of those on the list.  Remember, first I had to have an attorney set up the trust.  Then I had to get a federal Tax ID for the trust.  Then we had to fund and set up the trust at the bank.  I started this in March of 2010. 

I contacted the AG's office and inquired on how to change the payee from me to the trust.  The person at the local AG's office said just to fill out a change of bank account for direct deposit and that would be all I needed.  That didn't sound right.  I went back to the trust attorney who said that the order had to be modified specifying the name change.  The local AG's office really was not any help so a lawyer friend called the AG's office to try to help us.  The AG's office she contacted knew exactly what was needed, drafted an order, sent the paperwork to me for review, asked for the bank records and I thought that was all we would need.  However, in the process they found out that my ex owed back child support and they insisted that we go before a judge to address both issues.  I shortly received a subpoena.  UGHH.  I showed up for court in August thinking this should be easy.  After 6 hours of waiting (jail cases first, paternity DNA cases second, one spouse didn't show up third) the AG's attorney called us.  He immediately started going over the usual things you discuss in these matters.  Because my ex is currently not employed he lowered the child support to $250.  The AG attorney did not know that Brandon was disabled and I was there to change the payee.  He became extremely distraught when I told him the only reason we were there was to change the payee.  He did not have any of the records from our previous AG discussions, no copy of the order and no trust information.  He refused to make the change without the other party there, i.e. the trust.  I explained to him that I am the the other party because I am the trustee of the trust. The guy was so flustered that he wrote a bunch of information trying to address the payee into the order but refused to change the payee to the trust.  I told him I needed to run what he had thought up and written in the order past the trust attorney.  Therefore, we left with a temporary order and a new court date.  I checked with the trust attorney who said the changes would probably work.  So today we went back to court for another 6 hours to make the temporary order final.  After the agreement becomes permanent then I will need to file a new change in bank account.  I know in the long run I will be happy I devoted about 1 week of this year to this issue but right now it is just one more thing on the list of many things and really it was exhausting.  I hope none of you mom's have to go through the same thing, but I wanted to do this without hiring another attorney for the year and it seemed fairly simple. 

On to SSI and power of attorney and lots of margaritas. 

More later.
Leah