Carmen has been in the hospital at Children’s since Tuesday night and is doing well. She has an NG tube (nasal feeding tube) and I practiced putting it in this morning. Basically, it’s a long flexible thin tube that has to be put down her nose and then tested to make sure it’s in her tummy, not her lungs. To test, we will push air into the tube with a syringe and listen with a stethoscope for a gurgle sound. The tube is then attached to another tube leading to a feeding bag which is attached to a feeding pump that will administer a certain amount of Nutrin Jr. per hour. The plan is that Carmen will get continuous feeds at night (10 hours) and then 3 feedings during the day. Hopefully in a few weeks Carmen will come back to Children’s for the G-tube (tummy feeding tube) which sounds easier to deal with. The plan is that Carmen will be discharged tomorrow (Saturday) once we have equipment and training.

I’ll give a run-down of our stay at the hospital thus far:

Tuesday night, we brought Carmen to the hospital and she got the NG tube and an IV in her foot and monitors for oxygen and heart rate. She completely wore herself out crying (the IV was the most traumatic) and slept thru the night. (First time she has slept more than a couple of hours at a time in weeks.) I on the other hand got about 2 hours of sleep. Carmen’s little roommate screamed for 4 hours, from 11pm-3am and then got up to play! I was a mess!

Wednesday, Dave, Lauren and Grandpa came to visit and Carmen smiled and laughed when Lauren climbed in bed with her! Lauren said, “I love Carmen. She is my BEST sister ever!” Wednesday was fairly uneventful as the nurses worked on increasing Carmen’s feedings to make sure she could tolerate faster tube feedings. I prayed that day that we would get a very QUIET roommate if we got one at all. (Carmen’s first roommate had been discharged.) Carmen went to sleep at 9pm and so did I. We woke at 8am to find a little 9 year old girl in our room. This sweet little girl was angelic and perfectly quiet. Thank you God! I later found out that she also is adopted. Her family adopts special needs, medically fragile kids.

Thursday Carmen had an Upper GI test to determine future G-tube placement. Everything looked good. Thursday night I went home and Dave spent the night with Carmen. Lauren really needed me home. She has a cold and hasn’t felt well. I arrived home to find yummy food from my MOPS friends! I left Dave at the hospital with an apple and oranges. When I came back Friday morning I found a bag of Doritos, a Kit Kat, a Mr. Goodbar, a Coke and a package of cookies! Seems Dave had a party in the room.

Today (Friday) Carmen had a milk study to determine if she is having reflux. The results are that she has moderate reflux. Hopefully tonight we will get the equipment so we can go home tomorrow. I feel like I have been here for a month! Carmen has done really well and actually has slept better in the hospital than at home.

A few cool events:

• The doctor from Israel who was observing the day we found out Carmen might have Tay Sachs stopped by to say hello. She asked how I am doing. I so appreciate when doctors ask how we are holding up.
• Dr Tifft stopped by today….As I wrote this, she walked in! She is genuinely concerned about her patients and their families. I really like her. If anyone needs a geneticist and is in the D.C. area, I know a good one! (Ok, I am done with my Dr. Tifft advertisement. Ha! Ha!)
• I want to say thank you to Joy at ARC for ordering the bath chair for Carmen. We got it in the mail this week and that thing is built like a tank! Carmen will be enjoying her baths- and she is in desperate need of one after 4 days in the hospital!

I need to go get dinner but want to close by thanking my MOPS friends. This week they have blessed us with delicious meals and come up with a plan to help us. I could not do this alone and I thank you.

Tomorrow Carmen will be admitted to Children’s and will have the NG feeding tube placed (nasal tube). We have been told to expect a 2-3 day stay.

Carmen has been sick this week and not slept much. Last night she went to bed at 8:30pm and woke at 10pm. I rocked her for an hour and then my father-in-law (here to help us for the week and especially while Dave is in Chicago for a couple of days for business) rocked her from 11pm to 2:30am. I then took over until 4:15am when Carmen finally fell asleep for a couple of hours. She was coughing and crying and a mess most of the night. I took her to the doctor this morning and her lungs are clear. I gave her some Benadryl tonight to help dry up her nose and help her sleep so hopefully tonight will be better.

Hopefully we will all get some rest soon!

On a good note, Carmen gave me some nice smiles today. I am so glad we have great pictures of Carmen smiling. She has a beautiful smile.

Thanks to my friend Karen for the AMAZING castle cake for Lauren’s birthday and for all of you who made her day special! She wanted to stay home from pre-school and play with her new toys! (I didn’t let her!) I think she has the Pinkie Pie Pony book mostly memorized.

And a big thank you to another Hospice Angel, Monica, who played with Lauren for FOUR hours last Thursday so that I could get some stuff done around the house!

A Scottish angel named Eileen landed in our house yesterday! Eileen volunteers for Hospice and she came to watch Carmen so I could take Lauren to lunch. I never know how people will react to Carmen. A special few are perfectly at ease with Carmen and Eileen definitely is one of these! She had a whole conversation with Carmen and even made Carmen giggle a bit. Lauren and I went to the mall to Chick-Fil-A for lunch and then to Stride Rite for new shoes. Every little girl needs a pair of pink/purple/blue/orange shoes! Thank you so much Eileen!

A big thank you to my friend Kerri for the two huge boxes of girl clothes!

For the past few days Carmen has smiled and laughed more than she has in months. I love her smiles!

This is my first journal entry on our new site! I am excited about our site as I think it will be a great way to update our family and friends on Carmen’s condition. For the past couple of months, I have poured over the dozen or so personal sites about children with Tay Sachs. These are precious children and their stories have helped me immensely and I hope that this site might be a help to someone.

Today Carmen had her weekly physical therapy appointment and was more alert and active than usual. She perks right up when her physical therapist arrives! Her physical therapist let us borrow a massager to use on Carmen’s chest when her breathing sounds junky.

Carmen is having trouble eating this week. Today she ate breakfast but no lunch and only a few bites for dinner. She would not open her mouth for purees. I suspect she is losing the coordination to eat and it is exhausting for her to try. She did drink three bottles of formula today although much of it ended up on the burp cloth. I may try purees in the Sassy Infa feeder bottle tomorrow. Most of this week went like today so I suspect Carmen may be seeing her Gastroenterologist before her end of November appointment.

Today Lauren said, “I love Carmen more than the whole world!” I treasure these moments! A friend at MOPS commented that Carmen gave Lauren the opportunity to be a big sister. I hadn’t thought of it this way. I’ve cried buckets of tears thinking about how sad and lonely Lauren will be when Carmen is no longer with us. But, right now Lauren has a sister to love and hug and kiss and share her life. Lauren wants Carmen to be a part of everything she does, even if that means Carmen just lies next to Lauren while Lauren plays dolls. I often think that Lauren is learning a very valuable lesson early in life- to accept people just as they are.

Well, it’s late and time for bed! Goodnight.