Worried About My Boy

We’ve had a few weeks where we haven’t seen any doctors or had to deal with anything medical, other than therapy. It’s been nice. We’ve been working hard on motor skills, but diagnosis, bloodwork and doctors had been pushed to the back of my mind.

Feeding (solids) hasn’t been going great, but I haven’t been really stressing about it. Grayson ate some applesauce somewhat enthusiastically on Monday, but other than that, has barely touched his twice a day “meals” this week. I’m still giving him as much extra calorie formula as he will take, but he only actually finishes a few bottles entirely in a day.

Wednesday I got a call from the nurse at his pediatrician’s office. They had been sent some of the bloodwork results and wondered if our neurologist had called me. Umm…nope. Well, the chromosomal tests came back normal, but there were two things that were high, but the nurse didn’t have an explanation for them (not that I expected her to know what all this stuff means). So I called the neurologist and they called me back yesterday- with no explanation- that nurse didn’t even see the same thing on her report. Oh and the doctor STILL has not read G’s EEG, even though they billed insurance almost $3000 for it. Frustrating.

The pedatrician’s nurse asked me about how eating was going, and I told her not great, and I didn’t think that he’s gained much or any weight in the last month since our weight check. So then she called me back today, and Dr. D is referring him to a GI doctor. So here we go again- another specialist.

I weighed Grayson tonight right after his bath-we have a baby scale- 14 pounds, 4 ounces. This is 5 ounces less than he weighed a month ago. 0.3 percentile. So obviously something is wrong. An 8 month old should not go a month and not gain any weight, much less lose weight. An 8 month old should not be under 15 pounds. An 8 month old should eat more than 4 ounces from a bottle at a time.

So that’s it. I’m worried. Stressed. Sad. There are so many pieces to this puzzle but none of them are fitting together right now to make a complete picture.

AAAAAA! That’s it- my Friday night vent. Thanks for reading.

7 Comments

  1. basebell6 on May 21, 2011 at 2:08 am

    awh, i'm so sorry about the frustration. i know this wont make you feel better at all, but blaine weighed only 3 ounces more at his 9 month checkup than he did at his 6 month checkup. so i'm sure there could've been a measureable weight loss around month 8. we got in trouble. i got frustrated. he still refuses to eat baby food so i just give him bits and pieces of real food and pray he gains weight before his 1 year or we'll get in trouble again.thinking of you as you schedule a trip to another specialist. ūüôĀ hopefully you get answers soon and that boy gets some weight on him!!

  2. Sarah on May 21, 2011 at 2:12 am

    Big hugs and lots of prayers for you and Lil G! Just take a deep breath, mama… God has Grayson in the palm of His hands!

  3. Erin on May 21, 2011 at 2:18 am

    I'm so sorry. I was getting into bed and saw you posted and had to get up and read bc I was now worried too. So sorry he is not gaining the weight, and that you can't get answers from the doctor's. It does not seem right for them to not finish the job and actually READ the report. Short of calling three times a day, I have no idea how to expedite results. Sending positive thoughts and love and calories your way. xoxo-E

  4. Esperanza on May 21, 2011 at 2:21 am

    Oh Elizabeth! That is awful. I was always so stressed about Isa's eating. She NEVER was gaining the way they wanted her too and I was constantly worried about it. I can't imagine her actually losing weight in a month, that would be very stressful.I hope someone can actually get back to you about all those tests and that the appointment with the GI doctor goes well. I'm sorry you have yet another thing to worry about.You and G are in my heart and in my thoughts, as always.I hope you weekend is better.

  5. Rebecca Kline on May 21, 2011 at 2:47 am

    Love you

  6. Karen on May 21, 2011 at 3:07 am

    I'm so sorry. I'm sure it is very frustrating to know something is wrong, but to have no answers or much support. Prayers for improvement and peace.

  7. Emma G on May 21, 2011 at 9:42 am

    Just thinking about you and your family. Sending good thoughts and for doctors to get on the ball!!!

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