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Lamentations on a long day of Doctor Visits

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Thursday, January 20, 2011

Lamentations on a long day of Doctor Visits

To be alone in a crowded room is a terrible feeling.  To be the person with no friends...who looks around, wondering if anyone out there is interested in talking to you.  Do you have anything to contribute to a conversation? Will these people like you? I still find it daunting to go to an event totally alone.  And yet - here we are traveling this path - alone in a crowded room. I know we have support - and I'm thankful for it - but all children with WHS are so unique - what works for 1 child may not work for another. I ask question after question to other moms and to other doctors and specialists..... and still - the responsibility lies on me. So let's re-hash the events of yesterday.
1. Our first appointment was with our Geneticist.  Let me first say - that I have always had the most respect for him.  In an earlier post - I even refer to how he turned Raymond and I around in the early days of Alexander's diagnosis.  But - I'm guessing everyone is allowed to have an "off" day.  I'm praying that he was having an off day.  Our relationship at this point is to bounce ideas off each other.  I told him about Alexander's eating troubles. His response - "just use the pump." I explained all the work we did to get Alexander off the pump. "Just use it." I told him I thought he was getting teeth... he told me "I think that teeth/not eating thing is a bunch of Bologna." hmmm??? Even his assistant spoke up several times - which she never does. I even cried at the appointment. I was hoping for some suggestions to get us back on track orally.  I was hoping for reassurance that we are doing what is best for him.  He was also used the phrase "Comme ci, comme ├ža" when referring to Alexander's physical and occupational therapy.  He asked me what I was so afraid of.... my response, "screwing him up." and tears.  I was being brutally honest.  And brutal honesty sometimes accompanies tears.  We left Dr. Ladda's office more than a bit shaken by the entire experience.  He is one of the doctor opinions I trust the most - but to just be so flip about allowing Alexander to "exist" without trying to put to use the therapeutic options we have made me questions his advise. I don't want to question another doctor...
(By the way - a side note - Alexander has PT and OT 2 times a week and his nurse works with him regularly during play - he is not over therapied.)

2. Next appointment. Nutritionist.  This one already had me scared to death because every time we see a new person involved in Alexander's care it involves very extensive conversations about his condition.  For example - she comes armed with growth charts. Regular growth charts. Which Alexander will probably never be on.  I ask her - do you have any experience with kids with Wolf Hirschhorn Syndrome? She tells me no, but moves expertly into pointing out her little graphs and charts about Alexander's size on the growth charts.  All the while I continue to tell her - I'm not going to do anything with those growth charts.  I'm not going to talk to you about caloric needs until you start to listen to me about these growth charts!  Finally - (after she gives me the regular charts- which I threw in the trash when I got home) we begin to talk about Alexander's caloric needs.  It turns out - we are pretty close to hitting the mark! Well... actually - we are hitting the mark, but not quite by her "catch up" standards. ggrrrrr~~ don't you listen to me, Lady? Anyway - she had some very nice suggestions and gave me the link to a great website - The Calorie King.  Try it - you can even put in 1oz of mac n cheese and find out the calories! YAY!
3. Finally - Neurologist.  Dr. Barron. With Alexander's break through seizures, we had an EEG run the week before and he was going to tell us the results.  As for now, we are staying strong on Keppra and probably going to do a 24 hour EEG to see if he is having mini-seizures during the day.  We will schedule this later this month. He was super positive and finally concerned about Alexander's loss of oral eating skills.  He was the one who discovered Alexander is teething... 5 teeth.  3 molars and 2 incisors. No wonder my baby's mouth is sore! I'm just worried because ... how long until these teeth break through? Will he become dependant on the the tube before his mouth feels better?
An exhausting day. ... A day in the life of WHS dr visits.  Alone in a crowded room.

1 Comments:

At January 20, 2011 at 10:39 PM , Blogger Kisses4Kaylee said...

Oh Kristen,

I feel your frustration in that it is so hard to sometimes stay positive when you see other WHS kids hitting milestones and you feel yours...well...isn't. I do not know what the phrase "commie ci commie ca" means, but I can tell you that no one-- and I mean NO ONE-- understands what it is like to raise a child with such exceptional needs unless they are raising one...not even the doctors, themselves. You are an exceptional mother, and you have an amazing support system of other moms beside you to help. Hannah and Lauren and Jenn-- all of whom I know you speak with regularly-- are individuals who will tell you as things really ARE. Listen to them. Look at Karly and Riley and Norrah and what they are doing! Alexander is going to be doing it, too. I speak for myself, too, when I say that we need to be patient-- with the kids...with the doctors...and mostly with ourselves.

Let the EEG test tell you what you want and need to know-- til results come in, nothing is wrong, right? Alex is teething? That is awesome! You know he has teeth!! As for eating...keep going with your instincts and try to encourage the oral feedings as much as possible. And on the days when he just isn't into it? Tube feed without the guilt-- he will get back on track once he can chew. In fact, I'll bet he will WANT to eat once those choppers come in.

And remember-- you are NOT alone! Hugs and lots of love! xo

 

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