Dunkin Donuts

I am craving a Stawberry Coolatta from Dunkin Donuts.  The Coolatta is like a Fruitista Freeze from Taco Bell. Caitlyn & I have been on a kick lately & have been stopping quite frequently.  She prefers the Coffee Coolatta which is not for me.  The only coffee this girl is drinking is Hot Coffee. 

EXHAUSTION HAS SET IN

Caitlyn & Troy have been sick all week with a cold, and I'm on the verge of the onset of one myself. I have been on high alert in case he in running a fever, and we need to give him a stress dose of the cor-tef.  On top of  everything he is waking more during the night, because he doesn't feel good so we are drained.  He is 8 weeks old so we are hoping he starts sleeping through the night soon, but I am petrified of what I hear that kids with SOD do not sleep good.  I just don't know how much longer we can take the sleep deprivation.

I got my new-to-me car which I so desperately needed.  It is a Pontiac Grand-Am. I love this car!  The only down side is it's a two door which makes it a little more difficult to get the car seat in and out. I love the sporty look though & I'm glad I got a car that I really like. 

So, that about it....not an exciting post


Patty

Troy had an appointment with the endocrinologist last week. He is now on synthroid in addition to cor-tef. She said he was borderline, so she felt she should start him on it.  I can't tell you how disappointed I was.  It just seems so overwhelming at times.

We do have some good news to share.  We had early intervention in for his evaluation, and they said he is doing great, and that if he hadn't received a diagnosis of Optic Nerve Dysplasia that at this point he wouldn't even qualify for services.  I was elated to say the least.  We have heard from several doctors that he displays weak muscle tone in his neck.  Now I must brag a little bit about our little man. He rolled from his stomach to his back at 3 weeks old. So, I just thank God for keeping his hand on him & continuing to help us through this situation.

For Mother's Day we went to Tully's for dinner with family & friends. We had a great time and then we went back over my brother's house to celebrate my nephew's 19th birthday with cake & ice-cream. It was a nice way to spend the day.  Hope everyone had a Happy Mother's Day as well.


Patty

Septo Optic Dysplasia

Troy was born 3/26/2013 at 10:06 pm.  He came into this world weighing a whopping 8 lbs 5 ozs and was 21 1/2" long.  I was thrilled to have my first grandchild.  We spent a little over an hour getting to know this new little being that was going to quickly take over our hearts.

After his first bottle feeding the nurse started to wheel my daughter & the baby to a permanent room where they would both stay until the baby was released.  I was thinking to myself,  how great it was that Troy could  stay in the same room with his Mom.  It was a warm & cozy atmosphere.  It was now past midnight and I decided it was time that I head home, to give the new Mom & Dad some time alone with the baby.  However,  I lingered when the nurse said she was going to give him his first bath.  She pulled out a thermometer first to take his temperature. He was colder then he should have been, and she then listened to his chest.  Troy was having respiratory problems.  She quickly explained to us that she was going to take him to the NICU.  A 1/2 hour passed and she informed us his sugar was low, and he would be spending the night in the NICU.   I could see the disappointed look wash over my daughter's face. I assured her that he would be fine and he would probably be back in the morning.

Morning came & with it came more upsetting news.  We were told Troy's eyes were dialated & not reacting to light.  They needed to do additional test to determine what was going on.  An MRI was scheduled.  We anxiously waited for the results. We were then informed that they didn't find any cancer in his brain.  At this point we didn't know that they were looking for cancer.  It was shocking to know that this was what they were checking for.  Any test that came back positive gave me confidence that they were just being over cautious because he was in the NICU. An EEG was done this also came back normal.  Still we waited & waited...days passed & more test were done.  An optomologist came in from another hospital & we were told again that his optic nerves were small.  We began to ask more questions.  Would he have vision loss?  This was answered with a "yes". He scheduled an appointment for a follow up for 3 months.  Next came a appointment with an endocrinologist. The endocrinologist told us Troy was cortisol deficient. He would have to be given medication to replace this.  After he was given cortisol he became more alert.

Troy stayed in the NICU a total of 2 weeks & 1 day.  He was seen by many more doctors including a neurologist & many more test were done.  We finally received a diagnosis that Troy had billateral septo optic nerve dysplasia.  A rare condition that happens in 1 in 10,000 births. 

I hope by creating this blog we can see Troy's progress & share with other parents or grand-parents who may be going through the same thing.

Patty