This is a chronicle our everyday life as we live, laugh and love raising our teenager, our toddler and our special needs baby. Normal isn't always what it seems...

Saturday, November 26, 2011

Happy Thanksgiving!

As is normal for us I realize this post is a couple of days late but I couldnt let the week finish out without this post. We have SO much to be thankful for this year. I've gone back over the last year several times this past week. Lydon has made so much progress in the last twelve months. He is doing amazingly well overall. He still has his chronic issues but so far this year we've been able to stay home. We've only been in-patient this year a few times which is a far cry from the months we spent in-patient last year. We have gone from this..

to this...

To this!
So, yes despite all of the challenges, we've obviously had a great year!

We had a wonderful Thanksgiving,

with each other,

and lots of family! On medical note, we have seen some improvement since starting the new supplements and increasing his Amitriptylline. He's seemed a little off with his stomach and coloring of late but overall very stable. We got a call that the results from the specialized labs we sent off in June have finally come in!! I havent been able to speak to the doctor myself yet but from my conversation with the nurse, it sounds like we may have some answers! Finally....some answers! Cant even begin to describe how just the idea of that thought seems!! We have an appointment on Monday with Pulmonology. We have a dental appointment which we may put off until Jan. Other than that, we are very much looking forward to the next month of more time off together. Here's to some cold snuggle weather and no colds, viruses or infections of any kind!!

Monday, November 7, 2011


I promised I would do my best to update from our last appointments so here goees. This is going to be very brief because I am once again working with only one arm/hand. As you may know, I had a compressed medial nerve and had it repaired several weeks ago. Well, as luck would have it, my radial nerve was compressed as well. So last week I had the surgery to correct and decompress it as well as clean out and repair the tendonitis in my elbow. It has been painful but hopefully it fixed my aching problem and will be worth it.
So, back to our appointments. We first saw GI. The worst part of that appointment was the wait. We arrived at 11:20 for an 11:30 appointment and were finally called back and seen at 1:00!! Not much to report really besides the fact that we doubled his nightly dose of Amitriptylline(again) in hopes that this will help with Lys vomiting. After the long wait,we were happy for this appt to be short and sweet. Next was nephrology. This appointment went very well too. The only issue we really spent time discussing was the fact that Lydon has started drinking A LOT! Many days, he will drink until he vomits if we let him and since vomiting is an issue for him, this really is a concern. This can be indicative of a kidney issue (Diabetes Insipidus). That can be associated with some of the findings on Lydons last U/S and is a common condition with some mito kids. So, we will do a water deprivation test the next time we are in patient. Otherwise, his urine and blood pressure looked good. Finally, we met with Neurology. This was the most important appointment of the day. Poor Lydon was so exhausted. He was pretty much done with anybody in a white coat at this point. Regardless, we tredged through and made it. I was anxious about this appointment. We desperately needed a Neuro that was here locally and on staff at Childrens Memorial Hermann but we also needed that person to recognize all of Lydons issues and diagnoses so that we can treat him appropriately. This person was exactly what we needed and hoped we'd find. He talked to us about all of Lydons history. He talked about his chromosome deletion and his mito issues. He agreed that Lydon has obvious mito issues that need to be treated as such. The newest thing we discussed was his dysautonomia. Basically, Lydons neurological system isnt doing what it should to regulate his temperatures,sleep, etc. We will start Melatonin to see if this helps any. We also discussed the fact that several of these things point to an issue within his hypothalamus which could also go hand in hand with the mito issues. We made some medication changes in order to protect his liver, kidneys, and stomach. So, three less meds for Lydon. YAY for that!! We are scheduling a 23 hr EEG. This will not be fun but it is necessary. We will follow up when this is done. Next week we will see our pedi and hematology. Until next time.....~Jana~

Tuesday, November 1, 2011


We saw GI, Nephrology, and Neurology today all were good informative visits. I will update with more detaiils soon but we are very relieved to go to bed tonight with another great neurologist as part of our team! We are having to make a few changes with some meds etc and we are happy with the outcome of all of our visits but so glad today is over! More to come later....