Sunday, January 4, 2009 2:02 PM

 

Rebecca is doing well, we had a good Christmas and New Years. I’ve enjoyed all the time with David at home, and I know Rebecca has too. She did have her usual, expected increase in seizures right after Christmas. The holidays are so overwhelming for her. She has rung in 2009 with yet another cold. This is her 3rd cold since early September. She managed to get me (mom) sick right away this time too.

Lucky me.

A happy thing to share is how much Rebecca is just letting go of things, and standing independently. This happens often in our den, while she is playing. She will let go of the couch, or coffee table and just stand there. This morning it was for nearly a minute while she ate some leftover pieces of the mini-bagel I’d left for her on the coffee table. Other times she stands in front of her toy shelf, with no support. Considering at one point,not so very long ago that Rebecca would stand as long as you held her hand – but the split second you let go or tried to get her to stand alone,she lowered herself to the floor. Hopefully she will gain more and more confidence and we will see her walking on her own in 2009.

 

Saturday, January 17, 2009 6:37 PM

 

So Rebecca had her Video EEG this past week. All I can say is I am glad that is over with. We don’t have any specific results. I had spoken with her doctor on Wednesday morning, but haven’t since. I know they still know most of the activity is coming from the right side of the brain. They decreased some of her meds while she was in the hospital to bring on more seizures. So the doctors got lots of information to review. They are trying to schedule a SPECT scan to further determine the focal point. You’ll have to Google that one yourself – all I know is that when she is having the seizure a nurse will inject her with the special dye, and then Rebecca will go get a special scan of her brain. It measures the blood flow. The theory is that there is increased blood flow in the area of the seizure activity. Anyhow, we are recovering from the hospital. It was nice while we were there that Rebecca got to have one of the same nurses that she had back when she was little and last admitted to the 5100. Lucy is a GREAT nurse.It was so cool that she remembered our Rebecca. I had remembered that there was a nurse that we had really loved when we had been on the 5100 before, but I couldn’t recall who it was. But after a short time talking to Lucy again, I remembered it was her. Thank you Lucy for taking such good care of Rebecca (and Thank you to Tonya, Stephanie and Rachel as well).

One thing we still struggle with and hopefully one of our faithful caringbridge readers will have an idea – is persistent serious gas. I don’t mean a little bit of burping and farting. I mean excessive. Within a short period of time you figure out that there is no possible way that it is normal, or healthy. And her belly is distended. I’ve taken her to the ped once, but they didn’t really offer much help. On top of that, we are back to her intermittent vomiting. She threw up the morning before we went in for the Video EEG. We thought maybe dinner from the night before was “off”. Thursday when we got home, she threw up again. This time, the her bed looked like a scene straight out of the Exorcist. There was puke EVERYWHERE. Poor baby! Yet neither David or I heard a thing. Friday she didn’t want to eat much (can you blame her).Then she threw up again this morning when I was attempting to give her breakfast and her morning medicine. She went though this a LOT as a baby. She’d throw up once a day, on and off. It would come and go. It might be a couple times in one week then disappear for weeks at a time.

All we were ever told by the doctors then was “All babies spit up” Something isn’t right. I don’t want to see to hypochondriac, but I just know something is wrong with her GI tract. Hopefully one of you who follows her story will have an idea. And yes, she does take stuff for reflux.

 

Saturday, February 21, 2009 6:31 PM

 

Rebecca has been doing FABULOUS lately. She has been taking lots of independent steps. She isn’t totally walking by herself (using that as her primary means of mobility). But she is getting more confident, and is able to take about 10 steps by herself with very little prompting (or bribery with Gummy Bears).She is doing several other little things here and there that show great improvement developmentally.

 

 

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