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...

Sunday, January 29, 2012


This will be short and to the point. We ended up in the ER and admitted last week. Lydon had a horrible ear infection that ended up perforated before we could get it treated despite our very best efforts. He was exhausted before the admission and still is. This started out as "just a cold" but it was draining to him. It wasn't easy for Mommy or Daddy either; we are so tired of seeing him being poked and proded over and over again for something as simple as "a cold". We are discussing our options for possibly getting some more permanent access. This is a huge decision and not one we want to make but we hate seeing the pain and suffering Lydon goes through with every admission. For now,we are home, he is still feeling bad and full of cold symptoms but hopefully he will continue to get better this week without another admission. We have an appointment with Orthopedics tomorrow morning for evaluation of his walking and balance issues. We have follow-up appointments with all of his specialists in February and March. Stay tuned!

Wednesday, January 25, 2012

Two little boys and an ER run.

Lydon started feeling bad on Sunday. He seemed to just be a little "under the weather". I wasn't too worried and enjoyed cuddling with him in the recliner several times throughout the day. I guess big brother was jealous because he came home Monday from school and pulled his own stunt! He was outside playing with all of the neighborhood kids. They had pulled out the entire transportation fleet from our garage. Aidan decided to play fireman. So he drove our "firetruck" aka a little tykes cozy coupe car and his little girlfriend from down the street was his "engine." So she was pushing him as he was "driving" down the sidewalk. All was well until the front wheel caught some uneven concrete and out went the fireman onto the concrete, flat on his face! I got ice packs and gave lots of mommy sugar (all the while still cooking dinner and coddling Lydon) but I quickly realized that wasn't working out too well when he suddenly got very very sleepy, barely responsive and vomitted all over the floor! Can you say SCARE-REEEEE?? So, off to the ER we went!! Lots of prayers went up and by the time they started talking about IV's and CT scans, he woke up and started talking to us. We laughed at the coincidence but we had seen him be so sick and lifeless up until that point that we were grateful for the improvement. His CT looked ok and by that point I had talked to my mom who informed me that Lydon was miserable. So we got the discharge papers and they told us they'd save a bed for us if we needed to bring Ly in. Luckily we made it through what was left of the rest of the night. The bad part was that I couldn't get an appointment for him to be seen anywhere Tuesday and I was pretty concerned since he had been sick since Sunday. Coughing a yucky cough, mixed with a little stridor. Lots of mucus and a runny nose. He's been very gaggy and has complained of an ear ache. So far, we have held our breath own here at home. Hopefully we can stay home and he can manage this on his own but that's the problem with this disease. When he is sick and fighting something even this "simple", his body is pulling energy from another organ system that needs it just as much. We can see that be evident with his decreased energy and increased tummy drainage. If we do ok through the night, we will go into the sick clinic and hopefully not the ER tomorrow. For now, we cross our fingers and say our prayers!

Wednesday, January 11, 2012

Cardiology Appointment

So, like I've mentioned before in a couple of my previous posts, our appointment with the special cardiologist was today. We have known for some time that Lydon had some dysautonomia. He has always had problems maintaining his body temperature. It fluctuates as does his blood pressure, heart rate , appetite, energy level etc. But lately, we've noticed that with temperature changes or excercise, Lydon becomes short of breath and his lips turn blue. This obviously is not normal for a two year old. It was a very involved appointment. We arrived about 8:45 and left at 2:00!!! We were physically (and emotionally) exhausted! While we were there, Lydon had an EKG and an Echo done. He was such a trooper!! Poor guy was so worn out and happy to get a bottle he layed perfectly still for the echo without any sedative. So although it was exhuasting, we may have gotten some key clues for some of Lydon's issues. His EKG showed some variables that are common to mitochondrial disease. The ECHO showed a PFO. A PFO or Patent Foramen Ovale is a hole between the left and right atria. Everyone has this while in the womb but it is suppose to close shortly after birth. About 25% of the time, this hole doesnt close but it generally doesnt cause any problems or symptoms at all. However, in mito patients the stress that this puts on the body is much more profound and obvious. There is also a risk of oxygenated blood mixing with deoxygenated blood. This process called left to right shunting also increases the risk of a stroke. So because of all of Lydon's symptoms and the new findings on these tests run today, we brought Lydon home with a Holter monitor. This will monitor the activity of his heart for the next 48 hours. After this is complete, we will follow up with the doc and come up with a treatment plan. At that point, we will decide whether or not we will close the PFO. Needless to say, this appointment, like many of them lately, was a little overwhelming. Sometimes ignorance is bliss, sometimes knowledge is power.

For those of you who know us well and are intereted, Jonathan's MRI is scheduled for Friday morning. We are hoping this doesnt reveal anything worse than what we already know and that we will have results by Monday so that we can proceed with getting a biopsy done asap. Please pray that all of this will work out this way. Thanks so much!

Tuesday, January 10, 2012

A brief update

Last week, Lydon's tummy decided to act up. I should've known better because it had already been almost 90 days since our last admission...he's still sort of rocking along in trimesters. Somebody please send him the memo his 3rd birthday is in April!! Any way, he would act good during day, eating drinking and taking his formula like normal but every night after the first couple of hours on his feeding pump, he would wake up vomiting. So after the third night, we ended up in the ER. We were concerned that his tube was out of place again or he could possibly have an obstruction. We got there and they brought us right back and started the work up. They did all of his labs and an x ray of his belly. We were there for almost six hours before they finally gave us the all clear and let us go up for the EEG we had scheduled. Getting all 21 leads glued to his head was worse than sitting in the ER for six hours if you can imagine that! But finally, we got it done. He relaxed but still didnt want to eat anything besides a bite of cracker here and there. He was so exhuasted from all of the fighting that he slept pretty good that night. What a blessing that was!! I was exhausted! He didnt eat more than a few morsels of a cheese cracker all day Saturday and Sunday but he was doing a lot better. Today, he had a great day! He ate a tone of food. I was happpy that he ate and got to play with Mandy (one of his nurses)today. He was happy too!I had only been home for about 45 minutes when as I was heating up food for Holli and Aidan when he gagged and covered my kitchen floor with vomit. So, here we go again...who knows?! Tomorrow we have an appt with a special cardiologst. Wish us luck! ~Jana~