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!

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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!

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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.

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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!

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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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Yesterday we celebrated Carmen’s 2nd birthday. MOPS (Mothers of Preschoolers) hosted Carmen’s Celebration of Life party at our church. What a wonderful time we had! I wasn’t planning to cry but of course I did. I don’t know the count but I think about 160 adults/kids attended. It was amazing to have people from all different walks of life together. Carmen’s pediatrician, physical therapist, Hospice workers, and night nurse were there. Also, old friends and new friends and friends Dave went to Peru with on a mission trip and my MOPS friends and neighbors and friends with Guatemalan kids and so many more. My mom, my brother, Dave’s parents and grandma and aunt came. Pastor Dale and Terry came and I think my father-in-law told them about Lauren marrying her dolls and her Raggedy Ann doll officiating as Pastor Dale!

As the guests came in, they were given cards to write a note to Carmen and then at the end of the party, we were given a porcelain box with the notes inside. Also, Dave’s parents were in a separate room filming anyone who wanted to say something to us and Carmen. We haven’t watched the video yet but I am really, really looking forward to hearing what everyone had to say. Although, I am afraid I will cry all over again.

Dave created a slideshow of Carmen with two Steven Curtis Chapman songs: “When Love Takes You In” and “I Will Take Care of You”. Of course, I cried at that too. The slide show stopped abruptly with a few pictures to go. Martina, I am sorry because the next picture was the one of our kids together!

We had several photographers, my friend Rashmi (who also came over in the morning and took pictures of our family, www.rashmipappu.com), Beth (www.sugarrushphotography.com) and Sara from Hospice. I am really looking forward to seeing pictures from the party! Check out Rashmi’s site for a few pictures of our morning session.

The party was pot-luck and we had some really great food! I didn’t think I would have time to eat but I did. Thanks to everyone who brought a dish!

Cindy, a fabulous cake baker/decorater, made an AMAZING three tier cake with butterflies and flowers. It was just perfect and sooooooooooo yummy! Thank you Cindy!

As the cake was being served, we had an open mic time and people got to say a little something. Pastor Dale, some of Dave’s fellow Peru trip friends, Dave’s dad (who cried) and other friends got up and said something about Carmen and our family. It was so wonderful to hear people say how much Carmen’s life has impacted them. When we first found out Carmen was sick, our goal was to make her life count. And, we knew the only way to do that was to share her with others. I am so glad we are doing that.

The MOPS moms also handed out Carmen’s bookmark/prayer card. Rashmi printed a bunch for us. Thank you Rashmi! I have some left so if anyone would like one, please email me at blog@beautifulcanvas.org.

Carmen slept through the whole party. About an hour before the party, she was having a seizure and I gave her a very small amount of Ativan. Well, she slept and slept. Through her party and then through the night and most of the morning. At least she was comfortable and content for her 2nd birthday!

Carmen wore an adorable orange Naartjie dress and a matching bib from Cathy (cjbs51 on ebay). Cathy sent Carmen two bibs in hopes that one would match her birthday dress and one matched perfectly! Thank you Cathy! I highly recommend Cathy’s bibs. Carmen wears the toddler size and they are wonderful.

The whole Celebration of Life was just wonderful. Thanks again to everyone who helped and to Rachinee who pulled it all off! Thanks to everyone who came and celebrated Carmen’s life with us.

And a big thank you to my friend, Lori, who came over last week and cut Carmen’s hair, Lauren’s hair and my hair and also highlighted my hair. For the party, Lori straightened my hair and I just loved it! Now, all of you who know Lori, call her and schedule an appointment! (I promise, she is very good!)

Carmen had her 2 year check-up today. She continues to have frequent fevers and lung infections. And her seizures are increasing in frequency and duration. But, overall, nothing major was going on today. I was very relieved when Dr. Pedreira said that we did the right thing by going with Hospice and signing the DNR (do not resuscitate). We have not seen him for several months and did not know his thoughts on the direction we are going with Carmen. Dr. Pedreira has great wisdom and we respect his opinion. We thought we made the best choice for Carmen but it is always good to get confirmation.

I end this by asking for your prayers for the Anderson family. Charles passed away July 19th. We met Charles and his family at the Tay Sachs conference in March. If you have a moment to leave the Anderson family a message, here is Charles’ website, www.caringbridge.org/visit/charleslee.

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Happy 2nd birthday sweet Carmen!!!!!!!!!!!!!!!!!!!!!!!!!!! We love you so much! To Carmen’s birth mom: thank you for choosing life for Carmen. May God give you peace today that your little girl is loved.

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Last week, Lauren and I started reading through the Bible together. We usually read a chapter a night. Tonight, we read Matthew Chapter 6.

As I finished reading the chapter, Lauren asked me who wrote Matthew. I said, “Matthew. Matthew wrote Matthew. Mark wrote Mark. Luke wrote Luke. John wrote John.”

“They named them after themselves?” Lauren asked with a somewhat perplexed look on her face.

“No. Other people actually named them that,” I replied.

“Did Matthew write my Word and Song Bible too?” she followed.

“No. Somebody else wrote it based on what Matthew and others wrote,” I said.

“Then who wrote it?” Lauren asked.

“Ken Taylor,” I answered (although Lana informed me later that he wrote her Bible in Pictures, not her Word and Song).

“Ken Taylor???”, Lauren asked, almost incredulously. “He’s not in the Bible!!!”

“You are right,” I chuckled.

“Did Pastor Dale write the Bible?” she asked.

I chuckled some more. “No.”

                                                                                …

Thank you to everyone who participated in the caption contest. There are a few clear favorites but I need to review them all and pick a winner! I’ll try to do that within the next few days. Stay tuned!

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We have had a LOT happen and I have started a journal several times and then had to stop. I have never been so upset and horrified and angry as I have been since Saturday. I do not feel comfortable giving all of the details at this time but I can tell you that Carmen’s private duty night nurse overdosed her on Robinul. Robinul is an anticholinergic that we give Carmen in small doses to reduce secretions so that she does not choke on her own saliva. Rather than giving Carmen 0.8 mg of Robinul, Carmen’s nurse gave her 8.0 mg of Robinul. (Carmen was supposed to get 0.4 ml but instead was given 4.0 ml.)

Before noon on Saturday, Carmen had a nosebleed, her lips were so dry that they were stuck together and the saliva in her mouth was like glue. She had not peed all morning despite being fed continuously. She looked drugged. She was terribly dehydrated. As soon as I discovered the error, I called Carmen’s Hospice nurse who called Carmen’s pediatrician, who instructed me to rush Carmen to the emergency room. In the ER Carmen was immediately given an IV and was later given a catheter after not peeing for over 8 hours. Carmen was discharged in the evening.

Carmen is completely dependent on her caregivers. What she went through was horrible. Our goal has been to keep Carmen comfortable and to keep her home. Instead she was terribly dehydrated and lethargic and cried when the IV was placed and grimaced when the catheter was placed. Carmen has only cried a few times in the past months and seeing and hearing her in pain is horrible.

We know Carmen is going to die. But, the thought of an overdose taking her rather than the natural course of this disease is horrifying.

I guess the moral of the story is to double-check, triple-check the medication doses. This was a mistake that SHOULD NOT have happened.

To Guatemom, since you were in dire need of an update, I am sorry it was not a happier one! To Azeb, Tatiana and Cristie, thank you for making my day easier. Azeb and Tatiana thank you for watching Lauren and Cristie, thank you for the yummy Stromboli!

Carmen’s 2 year Celebration of Life birthday party is Sunday. Please email me at beautifulcanvas2007@yahoo.com if you would like to come!

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Carmen is doing a little bit better. We have started giving her Ativan at night because she is not sleeping. She gets a really good night sleep after an Ativan! Her breathing sounds better and she seems pretty comfortable. We are having a hard time getting her secretions under control. The scopolamine patch stopped working and we switched back to Robinul. We are giving her 4 mls (0.8 mg) three times per day and I think will increase to four times per day. If you have experience with Robinul and don’t mind posting how much your child is taking, please post in the guestbook!

Today my friend Martina came over with her three beautiful children from Guatemala. We had lots of fun! Thank you Martina for the picture frames - I love them!

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