Blog Posts

Heath's Journey 6/5/09

mujul79's picture

Yesterday was Heath's 2nd EEG. It was a much more extensive test then the first EEG they tried to induce his spasms not just observe him and I should have the results by Wed. Parts of it he had to be awake for and parts of it asleep and some of it was him watching strobe lights. He had no big events but did do some odd moments after the light.

Heath's Journey 5/14/09

mujul79's picture

Pedi follow up went well she did not think he had and EI worth treating as he has no symptoms but because audiology wont see him unless they are clear (slight pink) she said to fill the Rx and make a visit to have him tested and give him the meds for 10 days before it to make sure he is clear of any pinkness for his test.

Heath's Journey 5/12/09

mujul79's picture

We are home.

We stayed another night because he was acting all drugged and sleepy and vomited twice after the MRI.

Heath had one more test done today before we left and failed the hearing screen in both ears. This could have something to do with the speech issues he has. We will be doing more follow up with this with his ENT.

Heath's Journey 5/8/09

mujul79's picture

I just got to step away.

Last night I had to stop feeding him at 4am so he could be sadated for the EEG and MRI. At 8am they took us for the EEG. He did well and we did not need to give him any meds during the test he just slept in my arms in a chair. The test took about 45 min.

The rest of the day has been spent with many teams looking at him and eatting nothing by mouth so he was not happy.

Heath's Journey 5/7/09

mujul79's picture

Heath has been doing what I call episodes but I thought it was related to his apnea and just moving funny to try to breath. I have been asking about his funny movements and delay or possibility of Cerebral Palsy for months now and the pedi keeps saying his delay is because he can't do milestones yet because he is working to hard to breath. At LLL everyone suggested he have a brain scan because how he held his arms and pulled them in, and few times with one of the Dr's and they asked if he did that often and I said yes all the time, it did not click with me at all to me this is just Heath.

Heath's Journey 5/3/09

mujul79's picture

Wow my baby will be 6 months on the 4th and It happened so soon. Most days seem to be full with driving the older 2 around or dr. visit/phone calls and some days drag on and I think "how can I keep this up?". But then I lay down and nurse Heath and well how could I do anything less? When we breastfeed my life is all about him. Tessa may be trying to jump on me or asking questions and Peter could be running around singing.