Tuesday, April 23, 2013

Today's Appointment 4/23/13 ~ Endocrinologist

I am hoping this all comes out right because I am super duper tired tonight and should be in bed.  However, if I don't type this out tonight I am afraid some information might be lost.  Today was extremely stressful.  I attempted to get to the appointment early as we had not seen this specialists before, but that didn't work out.  Atlanta traffic worked against me the whole way, although it could have been much worse.  Then the parking garage to the hospital was full so I had to go to the other parking garage.  That made it so I had to carry my 25 lb boy through four buildings and two overpasses before getting to the correct location, 5 minutes late.  Ugh!!  I finally sat down and filled out paperwork trying to calm down.  My phone was ringing, Thomas wanted to go home, and I was having to think about how tall my husband's mom is.  What?  Got through the paperwork and checked my phone, my middle child was running fever at school and needed to go home.  Actually, I had two phone calls one mentioning each of my sons, so I thought they were both sick and needed to come home.  Luckily, it was just one and there was some confusion.  Called the hubbs got that done, Called the Ped and set up an appointment.  Heard the lady behind say she had been waiting two and half hours to see the doctor.  I refused to panic at this point.

Luckily, it was not THAT long and it was a pleasure to meet her.  She was very calm and thorough.  We went over medical history, growth charts, nutrition, etc.  She was even familiar with Klippel Feil Syndrome! I was very impressed.  She had not heard of the Townes-Brock Syndrome but assured me she would do her research and share any discoveries related to hormone production or alike.  She knew that KFS did have the trait of short stature and most times hormone therapy does not work for such individuals.  I found that to be interesting.  Again, I am not seeing her because I am afraid he will be too short or small, I am more concerned about any other underlying issues that are related or causing it that can be addressed.

She stated that clearly he was small for his age but she was going to back and check to see how his birth weight ranked for his gestation period.  She stated something about small babies not growing appropriately to age 2.  I honestly can't remember the relation at this point but she is going to check.  Thomas was 5 lbs 9.5 oz at 35 weeks and 4 days gestation.  We are doing a preliminary tests and then based on those results we will make the next move if there is one.  She is definitely going to continue to monitor him since he has had flat lines in his height growth and a history of problems maintaining weight.  He has had large dips of dropping weight based on his curve and we have to work to rebound.  She said at this point she isn't worried about him being malnourished but his body may have a hard time absorbing certain nutrients or minerals that could be working against us. 

We left the doctor and went to the lab for his lab work.  Held screaming baby down while they filled over five vials up for his blood work.  I was impressed at the level that she was going to test him for including liver function, kidney function, gluten tolerance, testosterone levels, etc.

 Again, more stress holding my sweet Thomas.  Its not often that we have to do blood work.  Thank goodness.  Then it was off to the hospital across the street for an x-ray of his hand.  He screamed bloody murder through this easy test as well.  I pinned him down another tech got him to lay his hand up there.  This is a Bone Age test that she wanted.  I thought it was interesting that she explained that she could predict his adult height with this test.  If the predicted height is 5'3" or less, then he would be automatically approved for growth hormones.  She discussed that there are quite a few side effects that should be discussed before taking that journey and that we would discuss them when and if we cross that bridge.  She also mentioned that it would mean a daily injection that I would have to give him and that I would be trained by a nurse to do so.  Eek!  Okay.  Oh, and it costs anywhere from $10,000 to $30,000 a year.  Sure, why not. . . makes sense.  I plan on applying for Katie Beckett again if it comes to that.  Just sayin.  So we wait.  She is going to call me with the results and we go back to her three months. 

We finally got home so I could take my middle child to the doctor.  All is well and today is done.  I will update you when I get the test results back from the doctor.  I honestly don't have a preference of how I want this to go, but it will be nice to have some answers.  Even if we just get to rule out some things that aren't an issue. 

I have to say, I got quite mad today.  I don't usually but the stress of the day just got on me and I started thinking about my baby's birthday is this weekend and I want to be party planning instead of spending my day here.  (Picture a little girl stomping her feet)  I then pulled myself together, thankful we had the appointment and would soon have more information than before. 

Done.  We are done with today, file it, stamp it and move on.  We are out of here!!
Philippians 4:6,7.  “Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

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