Happy New Year!!!!

 

As 2013 approaches us rather quickly I might add, I would like to take a few moments to recap what has been going on and what to look forward to in the New Year!

 

 

It is hard to believe that this past year Tristan "graduated" from Pre-K, spent the summer at Splash Down Water Park being a fish and then started Kindergarten.  I can honestly say that when he was 4 days old and we were sitting in the consultation room at Children's talking with Dr. Cross, that I never thought we would get this far.  Low an behold Tristan had his own idea of what he was going to do and accomplish.  Now he is a very intelligent Kindergartner who is in the advanced Kindergarten class.  He is having a little trouble with his hands as I mentioned in the last post but we are working to get help with that.  Tristan had 5 cavities filled without Novocaine because he cannot currently have it because it lowers his already low heart rate.  Other than that he has had an amazing year making new friends at school and growing like a weed!

 

In 2013 we are anticipating a fantastic year for all of us.  Tristan will be starting hockey lessons next week.  I will be sure to let everyone know how that is going.  He was swimming over the winter but after going ice skating for the first time yesterday he has decided he is going to give hockey a try.  I think his cousin Ira has something to do with this but that is OK with me.  We are also waiting on the reports from his last holter monitor and blood work that was done at the last Cardiology visit.  Tristan seems to be holding fluid again but it isn't too bad.  Some of the kids with the Fontan tend to do that for a while but it is just taking Tristan a really long time to get used to.  OK so maybe almost 4.5 years but who is counting :)

 

In 2013 we will also being going on our First Family Cruise.  We are very much looking forward to this vacation.  We are going to celebrate the marriage of our very good friends Todd and Leslie.  I am very excited and nervous at the same time because there is so much I need to get ready to take with me for Tristan.  I need to make sure I have their birth certificates, Tristan's most recent EKG and last Cath pictures.  I also need to bring the finger pulse ox I just recently purchased.  I will also have a letter from his pediatrician and possibly his cardiologist for that 'just in case" envelope.  I need to call the cruise line and make sure they are able to accommodate a pediatric patient and if not then I will make sure we have what he may need, ie: blood pressure cuff, finger pulse ox lead, pediatric leads, and possible pediatric needle for ivs.  I was told that they will make sure they have those on board for him as long as I speak directly with someone in their health department.  All fun things I have to look forward too in the next month.  I wouldn't change one minute of it!!!

 

I really hope that everyone enjoys their New Year!  I will do my very best to update this with new and excited information as much as possible. 

 

Happy New Year!  May your New Year be filled with all the joys you could imagine!!!

 

 

'Tis the Season!

'Tis the Season for us to be thankful for what we have and to honor those lives lost.  I am very deeply saddened by the events that took place on Friday.  I wish for all those parents the strength to get through this very rough road ahead.  I wish for them to find strength in friends, family and even strangers who become new friends.  I do believe that we need to come together as parents and watch out for our children as well as other children and be aware of our surroundings and the situations we are faced with everyday.  Tristan has taught us to remember that life is precious and to not take things for granted. 

We have a meeting on Wednesday with the intervention team at Tristan's school to get him scheduled for another meeting for either 504 or an IEP.  Tristan has been apart of a study at Children's for The effects of lack of oxygen on brain development in single ventricle children.  Wow that is a mouth full.  So after a day long evaluation it has been determined that though Tristan is very advanced for his years he also has some other things he needs help with.  It has been determined that his fingers have caught up with him.  Those fingers that I love so much do not want to function the way they should.  After having three surgeries on them to finally separate them he has some dexterity issues that need help.  He has a little trouble with writing in the designated area, needs more help with gripping the pencil and a few other every day things.  Also he has difficulty with Functional Recall. An example is that if you show him pictures of something then want him to tell you what he saw after taking the pictures away he can not recall what he saw.  It is not that he isn't looking at them or didn't see them, he just can not recall them from his memory.   Another way that is shown is even in group discussion where he is talking about something and then just looks at you with a blank stare.  He has forgotten what he was talking about and needs help redirecting and remembering.  Is it ADD or ADHD you are probably thinking and the answer is no.  His brain did not have enough oxygen during development in utero as well as until he was 18 month old.   So basically he will need OT services for writing and extra time for tests and writing assignments.  I know what a lot of you are thinking, not Tristan.  He is very advanced but will also need help.  The hardest part about all this is the fact that he is advanced.  He is not cognitively at the kindergarten level.  He has been tested and is more cognitively a first grader and a second grader in some areas.  This poses a big problem because with the testing the county has to do, he will most likely pass with flying colors.  He may not be given an IEP until he starts to fail in the classroom which I think he totally wrong.  He should be tested at the level he is at.  The good thing is that we have his teacher on our side because she sees the struggle that he goes through now.  The Executive Recall also effects him when he is doing an assignment.  His teacher talked to me one day after school and she had originally thought that Tristan was just being very thorough with his work, but come to find out he gets part way through it and can not remember what he is suppose to be doing.  So we think that he will at least get the 504 with services for his hands and extra time with assignments and tests at school because of the lack of dexterity.  Our hope is that will also help him be able to recall the things he is suppose to for those same assignments. All this came about because I was noticing he was very frustrated when he would come home from school and we couldn't figure out what it was.  After seeing Dr. Sanz at Children's and getting the report back we are able to start the process to get him the help he is going to need.  We are also going to be doing some behavioral therapy soon and he will be going to play therapy.  The events of his short little life are affecting him in ways that no one ever thought.  I get so angery when I hear people saying that these kids won't remember any of this.  Tristan is remembering some thing that at first I thought were from seeing pictures or hearing us talk about them but then some of the things he says about the operating room are things that we have not seen or even been there for.  Our hope is that with all these services coming together we can help make school a lot more fun for him and help him better understand what is actually going on with him.  He gets so frustrated when doing things it just breaks my heart.  For all our Single Ventricle friends I don't mean to scare you but this is what we all have to look forward too.  From the medication causing cavities to needed services in school, there isn't anything we wouldn't do for the lives of our children!  I wouldn't trade it for the world.  I love both my boys so much and will go as far as I need to with the school system to get the proper help that Tristan needs and if Drayk does too when he gets there I will fight for him too.  Their lives are very precious to me and I wouldn't trade my life with them for the world. 

I hope everyone has a Merry Christmas and a Happy New Year.  I will be sure to update once we know exactly what is going on.