We were up there anyway. Returning the Digitrace unit. The results are not in yet.
So before heading home we opted to stop by the hospital's lab. Now that we had Dr. Genes' paperwork in hand we were ready to offer up Trevy blood. To be studied. At Baylor...I think?
Anyway...
As chance would have it...Dr. Neuro happened to be passing by in route to the office. She noticed us...and detoured our way.
She is part of the reason we've chosen to put down roots here. Right from the beginning there was a connection. Sure...it had something to do with the fact that she duked it out with our insurance company to cover Trevor's ACTH. And that we have her cell on speed dial. How shocked we were to learn she has kids! Who answer her phone. And it helps that she recognizes us in random places on non-appointment days. Even though we haven't been in agreement on everything...I'm convinced, for us, she's irreplaceable. We were supposed to be here. She was supposed to transfer there. And our paths were meant to collide.
I am not a believer of coincidence.
She asked about Trevy (who was called for the poke right as she came over). How was DC? Said she wants me to make an appearance on the Today Show. Told me she was going to a pedi neuro conference where she would be picking the brains of those in attendance regarding how to proceed with Trevor's treatment plan. There is much debate about this. After the conference it would be vacation time. India has given us some great minds. I hope she's enjoying being home.
We had a regular mini-middle-of-the-hospital appointment.
Right there in the midst of the hospital. People registering. Scampering to appointments. Donating blood. My sappy was squeezed out as she grabbed me in a big hug. It brimmed in my eyes.
::smile & sigh::
And my heart ached. Wishing every family a neurologist as invested (albeit imperfect...I feels it's important to note we've had our disagreements....buuuuut) as ours.
A phone call from a frustrated friend the other day caused me to reflect. Nothing about IS is easy to manage. There is no one size fits all. Each journey is vastly different. The snowflake effect. And it's even more difficult when you're working with doctors (we have some of these as well) who are too busy to notice...really notice...your child. I wish it were different.
The only thing (I hesitate to call this advice...cause 'tis not my forte) I can offer would be...
...if your heart is not okay...follow it. Get a second opinion. And a third if needed.
My last thought...find a developmental pediatrician who will work in tandem with your child's collection of doctors. These guys specialize in following children like ours. Children at risk. Other parents have encouraged me to do the same. And I'm in absolute agreement. The more eyes the better. Observing...documenting...watching out for your child's best. I've even started the process of finding one in network.
Anyway...there was really no closure to my thoughts today...
...and my two minutes of Trevy watching Elmo have come to an end...and we're moving on to the more creative activity of dumping of Cheerios around the house...
::smile::
So before heading home we opted to stop by the hospital's lab. Now that we had Dr. Genes' paperwork in hand we were ready to offer up Trevy blood. To be studied. At Baylor...I think?
Anyway...
As chance would have it...Dr. Neuro happened to be passing by in route to the office. She noticed us...and detoured our way.
She is part of the reason we've chosen to put down roots here. Right from the beginning there was a connection. Sure...it had something to do with the fact that she duked it out with our insurance company to cover Trevor's ACTH. And that we have her cell on speed dial. How shocked we were to learn she has kids! Who answer her phone. And it helps that she recognizes us in random places on non-appointment days. Even though we haven't been in agreement on everything...I'm convinced, for us, she's irreplaceable. We were supposed to be here. She was supposed to transfer there. And our paths were meant to collide.
I am not a believer of coincidence.
She asked about Trevy (who was called for the poke right as she came over). How was DC? Said she wants me to make an appearance on the Today Show. Told me she was going to a pedi neuro conference where she would be picking the brains of those in attendance regarding how to proceed with Trevor's treatment plan. There is much debate about this. After the conference it would be vacation time. India has given us some great minds. I hope she's enjoying being home.
We had a regular mini-middle-of-the-hospital appointment.
Right there in the midst of the hospital. People registering. Scampering to appointments. Donating blood. My sappy was squeezed out as she grabbed me in a big hug. It brimmed in my eyes.
::smile & sigh::
And my heart ached. Wishing every family a neurologist as invested (albeit imperfect...I feels it's important to note we've had our disagreements....buuuuut) as ours.
A phone call from a frustrated friend the other day caused me to reflect. Nothing about IS is easy to manage. There is no one size fits all. Each journey is vastly different. The snowflake effect. And it's even more difficult when you're working with doctors (we have some of these as well) who are too busy to notice...really notice...your child. I wish it were different.
The only thing (I hesitate to call this advice...cause 'tis not my forte) I can offer would be...
...if your heart is not okay...follow it. Get a second opinion. And a third if needed.
My last thought...find a developmental pediatrician who will work in tandem with your child's collection of doctors. These guys specialize in following children like ours. Children at risk. Other parents have encouraged me to do the same. And I'm in absolute agreement. The more eyes the better. Observing...documenting...watching out for your child's best. I've even started the process of finding one in network.
Anyway...there was really no closure to my thoughts today...
...and my two minutes of Trevy watching Elmo have come to an end...and we're moving on to the more creative activity of dumping of Cheerios around the house...
::smile::
4 comments:
hmmm...who was that friend you were talking to?? teehee ;)
That is nice that she goes out of her way to speak to you. Our neuro is very similar. He always remembers our whole family history.
Wow...a hug from your doctor...that's caring! Caring is so important. There is no one path for treatment. The list of medications and tests to perform could go on forever. So disagreement on which path to take is inevitable but to have a neurologist invested in your child is amazing.
By the way, have you ever tried Baby BumbleBee videos? Sophie loves "All About Me". It really is a great video teaching the different body parts...I am amazed at how much she has learned watching that. She also likes the Vocabulary Builders and Action Words. Oh, and she loved Baby Einstein Sign Language. She picked up a few signs by watching that. If you want to try them out, I could send you a few of the DVDs in the mail (my MIL bought me the entire set so I have yet to get through them all as Sophie tends to like to watch the same DVD over and over again).
Shanna...lol...I meant to link you in! You can't imagine how much OCD self-control I had to muster to not go back edit...and re-post! I'm still tempted every time I look at this one! On the neuro note...I do love her. And I think rapport is good...but 2nd opinions are better! *grin* Even though we love her...we're happy we went for a 2nd elsewhere!
Elaine...isn't that the hardest...how everything seems so subjective? I've been meaning to pose the Q on our group about what top 5 things do you wish you had known right from the start. Because even the things that seems SO basic (like intravenous B6 while you're already inpatient) are hit & miss. Some neuros do it...some don't. I think it should just be done. On every case. Anyway...I just got the Signing Times dvds...and my big kids LOVE em'. Trevor's attention span is just so short. Although he will sit on my lap and watch a whole show. But the point is...I NEED A BREAK! lol I'm tempted to have you send me some of yours! (((hugs))) Don't know why...but you're really on my mind today!
...danielle
It's just so good to read about other families experiences. Gives me some insight and all. Of course, in Canada our health system is different so we don't face that battle, but the rest is there, the fear, the hope, the frustration, the exhaustion, the peace, the humor, the love for our child.
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