Carmen’s breathing is better but her seizures are out-of-control. I spoke with her neurologist today and we can increase her Phenobarbital once more. I think she had about 10 cluster seizures in the past 24 hours that lasted 8-12 minutes each. And, she had a few seizures where she screamed. For a child who no longer vocalizes at all, that sound is very frightening. Lauren is completely used to seizures and she asked if Carmen was ok after the screaming seizure.
Dave is going to be switching hosting companies for our website soon so our site might be down for a couple of days. Hopefully the new company will be better about staying up and running!
Carmen is still doing fairly well. We are giving her Ativan every night to get her to sleep and save strength for her day time marathon breathing episodes. She seemed comfortable today.
Carmen had her 2 year check up on Monday and weighed in at 30 lbs. and 8 oz.
Here are a couple of funny things Lauren said recently:
Lauren: “Wow, that’s a really cool toy!”
Sideways glace at me.
“Cool means neat.”
Ah, I am so old that my 4 year old feels the need to explain “cool” to me.
I wash both girls’ hair with California Baby shampoo. Not only do I LOVE the smell but Lauren has very sensitive skin and California Baby works well for her. I happened to find a good sale so I bought 9 (nine) bottles of shampoo. (This is completely uncharacteristic of me. Normally I detest having stockpiles of anything.) Dave lined the shampoo bottles up on a shelf in our bathroom. I was running Lauren’s bath in the guest bathroom and asked if she would please go find a bottle of shampoo. She runs to our bathroom and comes back and says, “So, mom, you collect shampoo?”
Yep, I am so “cool” that I collect shampoo.
Our site has been down quite a bit lately. We are working on a solution. Well, Dave is working on a solution. Sorry about the inconvenience!
Good news. Carmen slept very well last night and her heart rate was down to 115-120 while asleep instead of in the 140s and up. She seems better today but still is not back to her baseline but much better than yesterday. Thank you for all of your prayers. We continue to pray that Carmen will be comfortable.
Carmen is still not doing well. We started her on prednisone and zithromax. She had a rough day with lots of seizures and very, very labored breathing. Today was probably Carmen’s worst day yet. Carmen’s pediatrician said the next few days will be critical for Carmen. Thankfully we have Hospice and they are helping us care for Carmen.
Please keep her in your prayers. It is hard to believe that she is doing this badly, so young. But, Carmen’s variation of Tay Sachs has progressed so much faster than we anticipated.
My mom and two brothers are flying back to Texas tomorrow morning. We had a really fun visit! Lauren especially enjoyed spending time with Texas Grandma and her two uncles.
Lauren finished up two weeks of swimming lessons today. She had a blast! Thanks Azeb for taking Lauren last week and thank you Azeb and Reena for so often including Lauren in your play dates, even when I cannot come!
Now, I’m off to get my brothers some Rita’s Italian ice/custard before they leave for Texas!
P.S. Anyone watch So You Think You Can Dance??? Will should NOT have been voted off last night!
Carmen is not doing very well. Leslie, her Hospice nurse, came by today and Carmen is laboring hard to breath and has a fever and her seizures have suddenly increased. For the next few days, we are going to give her scheduled Ativan doses around the clock to keep her comfortable and rested. When she gets like this, she does not sleep. Hopefully, the Ativan will help.
The reality is that Carmen is having days like this more and more. She has had fever on and off for weeks now. But, she is young and she is fighting so she could stay with us for quite some time. The hardest part is not knowing how long she has.
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