After yesterday's update, I am sure that a lot of people are wondering why on earth I would take Cooper to TCH if that is the way the doctors are.  And the answer to that is multifaceted.  I'll start with the most obvious.  I talk about Dr. Vartabedian and Mel on here all of the time.  Today, they have shown us, yet again, how much they care for Cooper and his well being.  Cooper's labs showed a fall in his hemoglobin to below his transfusion level.  So, they called downtown and got him in for a transfusion tomorrow morning.  Dr.

I can't tell you how frustrating it is to go to an appointment (at 8am, no less) and have absolutely nothing happen.  In fact, the doctor we saw told me that she hadn't ever looked at Cooper's records or labs and that it would take her about 2 weeks to go through it all before she could formulate a plan.  And in addition to that, she asked that I compile all of his labs into a spreadsheet from the last 3 months and then keep that going and email it to her every week - essentially making it so that she doesn't have to go through his records at all because I will have done it for her.  Then she went on to tell me that she has worked at TCH for "4 whole years" and has never heard of Dr. Vartabedian...am I sure that he works for TCH.  I told her that Dr. V was a resident at TCH before she was out of diapers (sorry Dr.

It is there midnight phone calls that pull me up when I need it most.  We have been richly blessed with friends and family during this entire ordeal with Cooper.  But some of the most special people in our lives right now are those friends we have made along this journey.  While all of our friends and family are always there for us and so willing to do anything and everything to help us through every step of the way, it is the other parents that are walking this same journey who have gotten us through some of the hardest times.  And right now, I would say we are in one of those times.  The ironic part is, Cooper is doing very well right now.  It is us, his parents, who are in need of a little extra TLC at the moment.  The appointment with Dr.

Today has been good.  It has been a long time coming and I think we already basically knew what Dr. Koenig was going to tell us, but it didn't necessarily make it any easier to hear.  Based on Cooper's muscle and nerve biopsies taken last year, Dr. Koenig is ready to make the diagnosis of Mitochondrial Disease.  However, we are not going to 100% make that call until after the results from the electron transport chain study that is being run on Cooper's muscle biopsy is back in the next few weeks.  We'll see Dr. Koenig again after those results are in and discuss several other appointments we will have had by then.   We learned a lot of interesting things today while speaking with Dr.

I don't know if I will get any sleep at all tonight.  Tomorrow is the day that we will finally meet Dr. Koenig and get her take on Cooper and his overall health situation.  Dr. V and Mel have been working tirelessly to get records and information together for us to take to Dr. Koenig so that she will have as much to go off of as possible.  TCH has been very slow to get the records to Dr. K's nurse, so we faxed over everything we could get our hands on and Dr. V included some reports in his letter to her as well.  Hopefully we have enough to start with.  First thing in the morning, we are going to TCH to pick up some disks with all of Cooper's MRIs and other imaging studies on them so that we can give those to Dr.

Today has been a fantastic day!  Cooper's labs looked really good today!  I LOVE that news after last week's craziness in the lab department.  His liver numbers are improving and even his H&H and ANC are pretty darned good for him!  That makes my heart smile.  I constantly worry about how Cooper is doing overall because I feel like, whenever THE CALL comes, he needs to be the absolute healthiest he can be.  We work very hard to ensure that Cooper is as healthy as can be at all times so that we are always ready.  Whenever a fever or infection or cold or ear infection or whatever hits him, it makes me worry all the more because if THE CALL were to come when he is not at his healthiest he could either be 1) skipped over until he is back to optimal health or 2) go on to transplant when he is not at his 100% and perhaps not do as well.  Either option doesn't sound good to me.  So when we have weeks like the last 2 have been with Cooper, th

Cooper has had a great weekend.  His vomiting is much improved and he has had more energy this weekend, too.  I think the bug has finally passed completely and he is back to enjoying life again.  We are hoping we can see Miss Pat this week for OT.  We have missed her!  Tomorrow morning, we will run labs and we are praying that Cooper's liver numbers look much better this week.  Please pray that Cooper continues to feel good, stays healthy, and that HIS CALL comes soon!

I think the title says it all, really.  Cooper has had a much better day today and for that, we are all feeling very blessed!  He slept in until about 1:30 (his mom slept until noon!) and he was off and running once he was awake.  Well, more like walking, but at least he is upright and not just laying down all of the time today!  He isn't back to 100%, but he is so much better that we'll take it!  The poor thing keeps getting hiccups and about 75% of the time, they cause him to hurl.  But even the barf was a bit less today (and for that, we are also blessed!).  I think if we can clear up Cooper's cough and boogies that are causing a lot of extra gunky drainage, the extra barfing will get much better.  Tomorrow we will go in and see Dr.

Cooper and I are currently chillin' in an ER room at St. Lukes in The Woodlands.  We are here to save ourselves an admission downtown at TCH.  St. Lukes out here has a TCH ER staffed with Pediatricians from downtown.  Dr. B and Dr. V agreed to let us come here tonight, so here we are.  And again, I am going to be a doctor.  Or maybe I already am a doctor!  Cooper had to go to see Dr. B again this morning for a recheck of his ears and, as it turned out, a second round of antibiotic shots.  While we were on the way, I called Mel at Dr. V's office who then put me on the phone with Dr. V to discuss.  Overnight, Cooper didn't have any wet diapers at all.  He gets more than half of his IV fluids during the night, so that wasn't right.  He agreed we should recheck a chem panel and make sure he wasn't getting more dehydrated.  The labs were run stat, but true to form, Quest didn't have the results until around 6 tonight.  Dr.

Cooper had a terrible night and day today.  He was up vomiting and in terrible pain for most of the night last night.  He was miserable.  He was finally able to sleep after a dose of phenergan at around 5:30am.  Once that medicine started to work, he fell asleep.  And he slept until after 2 this afternoon.  He deserved it.  Pretty much as soon as he woke up, he started vomiting again.  And again, it was worse with any movement.  In addition to all of that, his ears seemed to be worse, his legs continued to hurt, and his belly hurt so badly that just picking him up or putting on a diaper caused him to yell out in pain.  I called Dr. Bhakta and he worked us in as his last appointment of the day.  Before we went in, I spoke with Dr.