Consult with the Surgeon

by

Lennon’s g-tube track will not heal on its own. Since the removal of his g-tube in November – the hole still exists with some drainage every now and again and some soreness, redness and even bleeding (he can’t help but pick at it.. sigh) – so we had a consult with the surgeon. The plan will be to fix it by via surgery that’s going to give him another 4 inch scar – he will be admitted for an overnight stay to ensure that his medication regimen isn’t going haywire and that he’s stable after the recover.

But wait …

that’s not all …

there is a possibility that during the summer at some point Lennon will face his hopefully last big surgery EVER! The current debate is who will do the surgery UVA vs. CHOPS – you know cause who have placed the liver has rights to close the muscle ..which will require a big incision and mesh to help it close. Think of it as a big hernia. If Pittsburgh agrees then UVA will handle the surgery however if Pittsburgh says.. nope we want to do this then we need to make some travel arrangements. The recommendation is to do this sooner rather than later because this will become problematic at some point for Lennon if we do not move forward with the surgery. Meh!

I hope that the second surgery can happen this summer – before school – so that he won’t be missing to much time. He will be missing a few days from the first surgery but in comparison that should relative minor.

Lennon isn’t a big fan but he is going along with it (not that he really has a choice) but his biggest question was if this will make him a real boy.

He gets that he is different – and it isn’t the first time I have heard him make this statement .. how heartbreaking it is… and the best I can do is to assure him that he already is a real boy.. and love him.. I can love him :)

ADHD vs. OCD

by

What a battle it is to have Attention deficit hyperactivity disorder but to also have obsessive compulsive disorder. I knew that Lennon had both for a long time and we have always treated the attention deficit issues as that seemed to be the most important to address. However, the healthier Lennon has gotten and the older he has gotten his OCD issues have definitely come to the forefront. But what does a 9 year old obsess over?

His Birthday.

Legos.

Books (as long as it has to do with Legos anyways).

Not so bad right? Well I was thinking that until it become apparent that he cannot follow direction or listen/hear what is being said to him (and yes I keep his partial deafness in mind). His sole focus is ..for my birthday I want this… this is usually how he starts his day… and throughout the day most sentences start with those words. At other times as he is looking through his Lego Ninjago Encyclopedia Book – he will look through it .. go to the end and point at every single play-set that he wants to get (half the time its followed with …for my birthday).

I hate this for him – considering all that other stuff he has already dealt with ..blah!

You might be thinking but that isn’t so bad it could be worse… yes of course it could be and I don’t complain – but its a lot of work to be his mom and see him so obsessed sometimes unable to focus on anything else. It can also wear you down after 48 hours or more pending when he’s not in school and my work schedule. This isn’t anymore fun for me than it is for him. I can see his frustration and his struggles with it even though its merely masked a 9-year old behavior.

Sigh.

At today’s neuro-development appointment we discussed changing his attention deficit medication obviously to address the attention issues so that he can function in school OR to change it to an SSRI to address his OCD issues. And did I mention that I love his doctors? Not today but in the past I am sure and so please let me reiterate this again. I love his doctors. We are on the same page!!

We will be addressing the ADHD issues for now and do the whole “watch & see” because they ADHD medications don’t stay in your system very long and they also don’t take long to start taking affect. Of course if that does not work we will then move into the direction of SSRI’s – which take longer to start doing their magic (if you want to call it that) and also take longer to get out of the system if you decide that is not the right thing to do. Of course, as will all medications guess what organ helps with the process….

drum roll

yep you guessed it … the liver

So now we wait until the neuro-development doctor can consult with the transplant team to see which one of the ADHD medications they can all agree on.

At some point, perhaps when he is a little older we might have to add some therapy to the mix – but for now this is what we have… medication and behavior management through the school and whatever it i we do at home and yes the lack of structure on the weekend – yeah it doesn’t help I am sure but sometimes it just is what it is.

Peace,

 

The annual IEP

by

 If you have had to have an IEP meeting.. or have to have them regular like we do – you may feel apprehension about going because you know the only reason the IEP is needed is due to the fact that your child is struggling. I find myself often noting the negative thoughts surrounding an IEP or the struggles my kid is experiencing because he missed 3 years of school, because he has suffered brain damage due to high levels of ammonia in his system. I struggle with the notion that he may always will be behind.. but then..

I go to his IEP meeting and I hear about ALL of this progress my kid has been making and while there is still SO much work for him to do and catch up on – his team believes in him and it absolutely shows! The delay continues to be consistent in the range of 1-2 years but he has made a tremendous amount of progress.. don’t ever believe that my child can’t because he will proof you wrong every single time.

  • Lennon is reading.
  • Lennon is doing math.
  • Lennon is enunciating and pronouncing his words
  • Lennon is learning how to interact in social settings.
  • Lennon is learning to tie his shoes.

And if that does not inspire you enough – not only is he doing all those things.. he LOVES doing all those things.  There is such a joy in his eyes when he knows he has mastered something or when he is able to share what he is learning and you get to see how he is applying it to his world. He is doing fractions.. one of those things I struggled with – he is totally doing them. He is writing stories and I see a future author in the making.

Clearly his world is not all roses and some days are more difficult than others – there are only so any times I want to hear about his birthday or what Lego set he wants (his two primary focus’ in life). But then I go to this IEP meeting and I observe his teachers and therapist and can see the hard work they have and continue to put into my kid – and that its not just a job for them. And I am grateful. And I am going to have to remember to be less negative about these IEP meetings.. cause well cause they are only there to help him not help me remember how difficult its been but the progress he IS making!