Friday, January 16, 2009

Good News, Bad News, and I may hurt a doctor news

Let's start with the good news we received yesterday. Let me rephrase ~ the GREAT news we got yesterday. ECI (Early childhood intervention) came out yesterday for Jude's final evaluation prior to starting therapy. ECI is provided by the state through the school districts. Mike and my aunt were there answering questions, and watching them test Jude. Mike said the therapist asked many questions such as "does he put his hand to his mouth", "Does he show expression", "Does he cry when hungry", etc. The amazing thing is most of Mike's answers were "yes". They also tested Jude's neck strength. My aunt explained that the therapist put Jude on her stomach, propped his elbows up, and then waited for him to look at her. My aunt was thrilled when Jude looked right up at the lady!!! The therapist told Mike that once she received Jude's diagnosis she was not expecting to find a baby that did very much. She said she is encouraged that he has so much muscle control, shows emotion, is eating well, etc. She did clarify that he should have MORE control over his neck right now so he is delayed there. He also looks to the left to much, and we have to work with him turning to the right. She also wanted us to take him to a pediatric opthamologist to test his eye sight. So all in all the meeting went much better than we anticipated. Jude is delayed, but we have a ray of hope again. They will be coming to see Jude every Monday to do either physical or developmental therapy. Later in the day I went to dinner with my aunt, and she said she thinks Mike is just amazing with Jude. She said when the therapist asked Mike what his goal was with Jude, and how much therapy he wanted. Mike replied "this is my job and I want him to walk so I want every bit of therapy we can get". Gotta love that boy.
The not so good news was that Jude had a seizure while they were there. He then had another one last night, and Mike teared up. I told him that it was a good day because Jude had only experienced two seizures. He explained that is why he had teared up because he thinks it's sad and unfair when the thought "my baby only had two seizures today" runs through his head. I then teared up, and we had another cry fest.
Now let's talk about the hematologist. I arrived at their office five minutes early for my 12:30 appt yesterday (that they had me rush in for). I waited for about 20 minutes, and I then asked the receptionist how long the wait would be, and explained I was on my lunch hour. I saw her get up to go see where they were at, but she never mentioned anything to me. I waited about another 15 minutes, and they finally came and got me. I then was escorted back to the room to see the doctor and...............waited and waited and waited again. I finally had to get up, and proceed to the front desk to explain I had to go back to work. I know specialists are busy, but I cannot miss anymore work right now. It wasn't planned for me to be out, and since I am currently the sole provider I must treat my work with respect. So I rescheduled and then left. A little bit later my cell phone rang, and it was the nurse of the doctor. She was apologizing profusely explaining she wasn't aware I was on lunch. She then asked several questions regarding Jude's brain bleed. She said they went over every hospital record at Baylor looking for the information. I explained to her that his MRI results were at UT Southwestern, and Cooks. She then asked me questions about my stay, etc. I was then told they wanted to do an array of blood tests prior to my doctors appointment. So they are scheduling the tests, and then scheduling the appointment. In all honesty I really do like this doctor's office, and I understand they were just running behind. Although, I can also tell you that for some reason they sound very panicked about this whole situation. I told Mike last night that the doctor office has to know that it wasn't anything they failed to do that caused the stroke. I believe Jude's stroke happened VERY early in utero. I told him my only thought is that they feel they missed something on me, and if something had happened there might have been an issue. Who knows though.........maybe they are just overly concerned.
Jude was a bit whiney again last night and again I am thinking he is just hurting from the seizures, or from teething. So I gave him a little more Tylenol, and he was a happy camper. I don't like giving him other meds on top of the meds he already takes. Although, I do remind myself that he is just little, and going through a lot. Therefore, he cannot say "Hey mom my head hurts really bad from that seizure!" so he cries.
My dinner with my family last night was very nice. I truly enjoyed it. I want to see my cousins again though so I need to run by their house.

1 comment:

Anonymous said...

That is really odd. Parker looks to the left as well. I wonder if it is just coincidence?

Amy Hendrix
Turtlemom from the VM board