Lana's Journal

Thursday, August 07, 20008

It's here! Please update your "favorites" and links to go to www.beautifulcanvas.org/blog/.

This page will NOT be updated anymore and will be removed from our website in about a month.

Thursday, August 07, 20008

Wow! It's been awhile since my last post. I have lots of updates to write about and will try to do that later tonight. But I want to let you know that Dave has been working on the site. He thinks that it will be ready either late tonight or tomorrow. Here are several features of the new site that I am excited about:

1. I am going to be able to post my own journal entries. Dave is usually pretty good about uploading my posts but sometimes he gets busy and can't do it right away.

2. The guest book will no longer be available, at least not as it is right now. We are going to keep all of your messages on a static web page but new entries will not be allowed because...

3. My journal and Dave's Random Musings will soon be a blog, similar to many other blogs you may read. You will be able to respond directly to each post. You will be able to read all posts in the order in which they were written or by category (Lana's Journal, Dave's Random Musing, Tay Sachs, Special Events, etc).

4. You will be able to receive automatic notifications when new posts are added. You can either subscribe using RSS (I have no idea what that is but Dave says that many people use it to read blogs) or subscribe to receive email notifications.

So, stay tuned!

P.S. Carmen is doing quite well today. No fever and breathing is fairly good. She has been dealing with unexplained diarrhea for over a week now and I hope we can figure that out soon.

Tuesday, July 29, 2008

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!

Sunday, July 27, 2008

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!

Saturday, July 26, 2008

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.

Friday, July 25, 2008

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!

Thursday, July 24, 2008

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.

Monday, July 21, 2008

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 beautifulcanvas2007@yahoo.com.

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.

Sunday, July 20, 2008

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.

Monday, July 14, 2008

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!

Wednesday, July 09, 2008

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!

Saturday, July 05, 2008

Happy 4th of July (a day late!)! We had a fun day. Our church small group came over for a BBQ. Dave’s parents are here and they fit right in to our crazy, fun group! We took the girls to see fireworks in Germantown. Lauren fell asleep on the way and we had to wake her up for the fireworks. She was so tired that it took her a little while to wake up. She did enjoy the fireworks once she was awake! We have seen fireworks in New York City and Washington D.C. but the fireworks at the South Germantown Recreational Park were really fantastic! I was surprised at how LONG the finale lasted! Dave had a perfect spot almost under the fireworks behind the park so we had a great view. (Uh, oh. I’ve given away Dave’s secret! Next year there will be hundreds of cars in Dave’s secret spot!)

Thursday the doorbell rang and a delivery man was standing outside with food- a huge cheese tray, 4 foot long subs, a box of cookies and a humongous container of mayo and mustard. My dad and step-mom had food delivered to us! Thanks so much Dad and Nancy! We served the cheese tray at our 4th of July party and it was just perfect!

Today marks the one year anniversary of our first meeting with Carmen’s geneticist, Dr. Tifft. I have talked to other parents of kids with Tay Sachs and they say that diagnosis day was the worst day of their lives. I agree. Carmen was not officially diagnosed until October because she has such a rare variation of Tay Sachs, but July 5, 2007 was the day Dr. Tifft told us Carmen most likely has Tay Sachs. I remember what I was wearing. I remember the moment Dr. Tifft walked in the room with the NIH doctor from Israel. I remember Dr. Tifft asking me how much I knew about Tay Sachs. I remember telling her I knew about Hexominidase A and the genetics behind Tay Sachs. (Yes, I had googled it even though the retina specialist three days previously had told me not to!) I remember asking her if she thought Carmen had Tay Sachs and she said yes. And, I remember breaking down in tears. I remember flashing back to the information I had just read on Tay Sachs. Blind, deaf, unable to swallow, paralyzed, seizure-ridden, severely mentally retarded, unaware, and death by age 4 from recurring infection. I thought I might throw-up. I remember looking at smiling Carmen who happily drank her bottle and sat in our laps and thinking, “THIS CANNOT BE HAPPENING.”

Today we do have a child who is blind, cannot swallow, is mostly paralyzed, seizure-ridden, severely mentally retarded and mostly unaware. But, it is not anything like I thought it would be. Nothing like I thought it would be. She is still Carmen and I still love her just the same, maybe even more. I cannot adequately express how I feel about Carmen. It is impossible to describe mothering, loving and caring for a child who is dying. Even more impossible to describe loving one who in many ways we have already lost. I miss her loud, hearty laugh. I miss hearing her smack the exersaucer music button over and over. I miss hearing her wildly kicking and hitting the chimes under her activity gym. I miss strapping her into the high chair and seeing her mouth immediately open, ready for food. I miss hearing da-da, ga-ga, ba-ba coming from her room in the middle of the night. I miss walking into her room and getting a huge smile when I peek over the crib rail. I really miss Carmen.

I know that I will also miss Carmen, the way she is now; calm, content, completely dependent on us - angelic. I won’t miss the seizures or the endless medications or the fear that she is going to stop breathing. I won’t miss watching Carmen grimace in pain and having no idea what is wrong. But, I know that I will miss the days of caring for Carmen.

Carmen, I love you so very much. A year ago, I was so scared of the future and what you would be like. Now, I realize how much I love you, just the way you are.

Take a look at Dave’s journal. Today’s entry and the July 2nd contest entry. Come up with a catchy slogan for the picture and you get a prize!

Wednesday, July 02, 2008

Carmen is doing a little bit better. Her breathing is more even and she is resting. I have been giving her morphine and ativan when she seems distressed. The prednisone is puffing her up but it may also be helping.

My sister-in-law and her three kids left today. We had loads of fun! Never a dull moment with the cousins!

Last night we took the girls and my sister-in-law and kids to a womens’ shelter to help serve a meal. A friend of mine fixes meals for the women on a regular basis and asked if some of the MOPS moms wanted to join her. We brought sodas and helped where needed. They had plenty of help so I am not sure they actually needed us but it was a good experience to get out of our comfort zone. Several of the women asked about Carmen and I am always happy to explain a bit about Tay Sachs. I was debating not going simply because Carmen is not doing well but then decided that we should go. There is nothing more rewarding than serving others.

We got a most wonderful package in the mail yesterday! Diane, mom to three boys and a daughter from Guatemala, sent Carmen and Lauren gifts. The girls got matching Gymboree dresses and sunglasses and hats and hair clips. Carmen got a cute soft stuffed bear and Lauren got a water bottle with her name on it and a really cool book with animals that move (holographic?). I have to say that this package came at the perfect time. Diane’s thoughtfulness brightened up our day! Thank you.

My mother-in-law and father-in-law are coming down tomorrow for the 4th of July weekend. We talked about driving up to New York but decided it was too much with Carmen not doing well. So, they decided to come to us instead!

Congratulations to my brother, Kevin, for winning Employee of the Month at Target! Great job on all your hard work!

One year ago today, we took Carmen to the ophthalmologist and the retina specialist and found out something was very wrong. I remember the retina specialist saying he was very sorry and I said something like, “No, I am just happy to find out what is wrong!” I had no idea.

Monday, June 30, 2008

Carmen is not doing well at all. She has been awake for days, only sleeping for a couple of hours at night. Her heart rate is staying in the 160s while awake. She is really laboring to breathe. Today her Hospice nurse, Leslie, came by and we are putting her back on an antibiotic and prednisone. We have started giving her Morphine and Lorazepam (Ativan) to calm down her breathing and help her sleep. Carmen is having many apnea episodes where she suddenly stops breathing and then restarts.

Leslie said today that the end could be at any time.

Carmen is not following a “typical” Tay Sachs pattern. Perhaps it’s the AB Variant. I am not sure we will ever know why she is having such intense breathing difficulties. There are no AB Variant patients to compare her to.

All along Dave has been praying that, no matter what, God would be merciful to Carmen. As heartbreaking as losing her is going to be for us, I cannot think of anything more merciful than for Carmen to be in Heaven. She will be able to run, play, smile and laugh.

When I am having a hard day I think it is horribly unfair and wonder how this could be God’s best for our lives. But, then I remember our pastor’s wise words when he said what a privilege we have been given to usher this little girl into the Kingdom of Heaven. We so often ask for blessings but then tell God what those blessings should be. There is no doubt that Carmen is one of the biggest blessings of our lives even if we only have her for a brief moment.

I don’t know exactly how I will feel when Carmen dies but I think we will just feel so incomplete as a family. We may go on to have or adopt more children but no one can replace Carmen. I am going to miss her so very much. I want her to keep fighting so I have more time with her but I do not want her to suffer.

Last week I had a really bad day. The next morning Dave let me sleep in and when I woke up he told me that Wendy had dropped off Chicken Parmesan! Now, that is a good start to a day! Thank you, Wendy!

My sister-in-law, Karen, and her 3 kids have stayed with us since Friday and the kids are having a blast. Lauren loves having her cousins to play with. Dave got some great shots of Dakota, who is almost 8, holding Carmen.

We are working on Carmen’s Celebration of Life party on her birthday. I think it is all going to come together!

Wednesday, June 25, 2008

Happy 27th birthday Kevin! I hope you had a really great birthday! Kevin is one of my younger brothers. He is best known for his chili made with something like canned Wolf brand chili, BBQ sauce, jarred spaghetti sauce and maybe even ketchup!

Carmen and Lauren are both doing much better. Carmen is on her second day of Zithromax and is responding well. Her biggest issue right now is uncontrollable secretions. She is soaking thru several bibs per day. We tried the Scopolamine patch and it worked really, really well for a few weeks and then became completely ineffective. I guess we will go back to Robinul to dry up secretions. Last night Carmen’s nurse said she sounded like she was drowning. I hate this. One day one thing works and then the next it no longer works. She can be on an insanely high dose of a drug, larger than an adult dose, and have no relief at all from symptoms. And we have never found anything to help reduce her strider (LOUD breathing sounds). After listening to her distressed breathing all day, I often want to scream. Not out of frustration at Carmen but out of complete frustration that there is not a thing I can do for her.

Sunday, June 22, 2008

Carmen’s fever is back and she sounds worse than usual so please keep her in your prayers. Her Hospice nurse is going to call in an antibiotic tomorrow. Hopefully whatever is brewing will respond to the antibiotic.

Lauren also woke up with a fever. She told me that her forehead was hot. Yes, 103 is hot! She is taking an afternoon nap right now which it totally uncharacteristic of her. Tomorrow will most likely be a doctor day for us!

I haven’t heard Carmen cry in months. Friday she burst into tears. I couldn’t find anything wrong and she stopped after a few minutes. It was hard to see tears rolling down her face and not have the slightest idea what might be wrong.

I went to church today while Dave stayed home with the girls. After the service, I walked past Pastor Dale and he asked how we are doing and said he is praying for us. We go to a big church, something like 6,000 people. With this many people, I am sure Pastor Dale and Terry know a ton of people with huge needs. I feel blessed to know that this very Godly man prays for our family.

Last night we had a wonderful time with our friends Ted and Karen and their kids. Dave is becoming a master griller! The secret’s in the sauce!!! (Anyone see Fried Green Tomatoes!?) I have two favorite marinades and I’ve tried a ton of them and made my own. But, these two are the best, in my opinion. McCormick Grill Mates Tomato, Garlic and Basil Marinade and McCormick Grill Mates Hickory BBQ Marinade. You add olive oil and vinegar to the dry package mix and marinate the chicken overnight. Yummy!!!

For summer I LOVE salads. My friend Karen brought a salad last night that I really could eat for every meal.

Karen’s Delicious and Nutritious Everything-in-the-Fridge Salad

Mixed greens
Grape tomatoes
Canned black beans, drained
Canned corn, drained
Cucumber, sliced
Onion, sliced (I like Vidalia)
Green onions, diced
Black Olives
Cilantro

Dice or chop whatever needs chopping and mix everything together. No need for salad dressing as the corn and beans add a little bit of moisture. Enjoy!!!!

Big thanks to my friend Cristie who picked up Carmen’s birthday party invitations yesterday! You are thoughtful and kind and congratulations on finding out you are having a BOY!!!

Friday, June 20, 2008

Happy 23rd month birthday Carmen!!! We love you very much and just cannot believe you are almost TWO! You are so sweet and beautiful and we hope you feel how much we love you. And, thank you to Monica who called and wished Carmen happy 23rd month birthday and reminded me that today was the day!

We had a very busy week. I like staying busy when it is fun busy!

Tuesday we went to Brookside Gardens with a friend. I have wanted to take the girls and actually had a trip planned a few weeks ago but wasn’t able to go. This time we made it there and had a wonderful time. Lauren got to ride the carousel twice and we had a nice picnic. The weather was perfect and it was so nice to be outside.

Wednesday my friend Kerri came over from Virginia with her three kids and we had a fun visit. We have been friends with Kerri and her husband for 8 years. Hard to believe! The first Sunday they visited our former church, we invited them over for a Super Bowl party that night. We’ve been good friends ever since.

Thursday we went to a Cookie Lee jewelry party. My friend Lori just started selling Cookie Lee and this was her first party. I told the hostess that I hoped it was OK if we stayed for awhile. Once I get somewhere with Carmen and all her equipment, it is easier to stay! She assured me that it was fine so Lauren played with the other kids and I looked at jewelry and sat with Carmen. I ended up buying a really pretty silver rose necklace and a pair of silver hoop earrings. The earrings are big and out of my comfort zone but I am trying to be bolder! You only live once, right?!

We are planning Carmen’s 2nd birthday party! More details to come!

I am happy to say that I am FINALLY learning how to use our camera. A few years ago, we bought a digital SLR and have pretty much been using fully automatic mode. This week I decided that I was tired of just so-so pictures. With a few tips from the amazing Rashmi (www.rashmipappu.com), I am on my way! I have loads to learn but felt good about shooting in aperture mode. I have very shaky hands so a tripod is very helpful to me. It limits what I can take but at least the pictures are in focus!

Hope you are all having a really great summer!

Monday, June 16, 2008

Apparently, there was a water main break somewhere around and we are not supposed to be washing dishes or clothes. And, we are supposed to use bottled water or boil before we drink. Last week no electricity; this week no water. What’s it going to be next week????

Sunday, June 15, 2008

Happy Father's Day, Dave! I hope you had fun on your present scavenger hunt! Lauren had a blast helping make clues and hiding your presents. You are a wonderful father who is not just surviving life but passionately living. I am proud of you for wanting to do more and more and more for others. Your girls adore you and I love you very much.

Happy Father's Day to my dad in Texas! I hope you had a really great day!

We have met some truly great dads in the Tay Sachs community and I want to wish all of them an extra special Father's Day.

Today we went to church and we were excited to see Carmen’s Hospice nurse, Leslie. We knew she also attends COR and this was the first Sunday we met up.

After church we came home and Lauren and I set up a scavenger hunt for Dave to find his Fathers’ Day presents. Carmen gave Dave a bunch of pins for her stroller sunshade. Everything from a Washington Redskins teddy bear pin to a Toronto BlueJays baseball hat pin to a Guatemala Starbucks pin. I had fun scouring ebay for fun pins! One of my favorites was a pin with both a Guatemala and a United States flag. Lauren gave Dave a Happy Father's Day Ariel Disney World pin and a Starbucks gift card and a book from my dad about fathers. We hid this stuff all over the house. Under Lauren’s bed, in Dave’s shoe, in the Camry, behind the couch, etc. We gave Dave the first clue and then each time he found a present, he also found the next clue. I videotaped the whole adventure!

For dinner, I got take-out Thai food for Dave. Thai Farm is Dave’s very favorite restaurant. He LOVES Panang chicken. Panang chicken is a curry, coconut milk and peanut dish. We always feed Lauren first before getting Thai food because she is allergic to peanuts and we don’t even want her around them. For dessert, Lauren decorated Trader Joe’s yummy chocolate pudding cakes.

Thanks to my dad for the fun Disney Princesses music/book box for Lauren. She just loves it!

Saturday, June 14, 2008

I have a lot of catching up to do as we have had a busy few weeks! But, first, please keep Carmen in your prayers. She seemed out of sorts yesterday and had a fever last night and this morning.

Let’s see, I’ll start with our tornado adventure on June 4th. I decided to take the girls to the mall to the play land. I have not taken the girls anywhere together in months so this was a special outing. (We go to church all together but Dave is there to help me!) We got to the play land and Lauren was excited to see friends from church so she had a blast running all around. I was sitting with Carmen and suddenly heard heavy rain. I decided to stay put and wait it out. Bad decision! A few minutes later the electricity in the mall went out. Lauren then had to go to the bathroom so I had to take her to the bathroom in the dark. Some bozo decided to lock down the mall so we could not get out. I walked past some windows and saw the winds whipping around and the sky had turned green.

Maybe 30 minutes later mall security started letting people out but we were on the lower level and my car was on the upper level (the entrances on one side of our mall are on the upper level while the entrances on the other side of the mall are on the lower level). This was not good because I had Carmen in her Kid Kart stroller with oxygen tank and feeding pump and I could not possibly get up the stairs. I could not get up the elevator because the power was out so the only option was to walk around the mall in the rain! Lauren had lots to say all the way around the mall! We got a little wet but nothing too bad. The drive home was ridiculous though because all the lights were out so a normally 10 minute drive took over an hour.

The next 24 hours were interesting because we did not have power. Carmen’s feeding pump, pulse oximeter, and suction machine have back-up batteries for maybe 18 hours and we have back-up oxygen tanks. We drove to my friend Lori’s house about 30 minutes away to give Carmen her VEST treatment and nebulizer treatments. Thank you, Lori and Rick! The night nurse sat in the dark with a flashlight! The following day, the temperature was rising and our house was HOT by 9am so we drove to my friend Karen’s house and sat in her nice air conditioning! Thanks, Karen! I was able to recharge Carmen’s equipment. When we went home around 2pm, the power was back on and I was just happy as can be!

Fast forward a day and I was getting ready to take Lauren to a Go Fish kid’s concert at our church. I heard Lauren hysterically crying and she came running into my room crying that she had swallowed a marble! I called the doctor and he said to wait a few days and it will probably pass. So, I poked around in poo for a few days but did not find a marble. Four days later Lauren woke up crying that her tummy hurt and she had a slight fever. I took her to the doctor and they did an X-ray and there was no marble. I think Lauren was most upset that she lost her marble! She has been saying things like, “I won’t swallow my necklace because I don’t want to lose it.” Funny thing is that Lauren hasn’t put anything in her mouth since she was a baby. Maybe she is regressing a bit because of Carmen. She often tells me she wishes she was a baby.

Dave went to Los Angeles this past week for business so I had the girls by myself. I am very tired but we survived. It was a HOT week. On Tuesday I decided to take Lauren to get ice cream and the thermostat in the car said 111 in the sun. Wow!

I took the girls for a walk yesterday. Lauren found sticks and flowers and a ladybug. I found myself wishing she would hurry up and move along. Then it hit me that to Lauren, it’s all about the journey not the destination. I so often want to hurry up life and move right along. Today I am going to enjoy the journey.

Back in May Dave and I had the privilege of sharing Carmen’s story again, this time at a Ladies’ Tea. We thought it would be easier to tell it the second time, but it was not. Dave’s parents drove down and we were happy to have their support. We want people to know Carmen and we want to share her with as many as possible and the only way we can do that is to share her story. So, as hard as it is, we will continue taking that opportunity.

Tina, we got the CD in the mail. You are an incredible young lady. I think God has amazing plans for you.

Sunday, June 01, 2008

We had quite an adventure today. After church we walked to our neighborhood’s annual picnic. It was a beautiful sunny day and I slathered all of us with sunscreen. We had just arrived and gotten our hotdogs when huge icy raindrops started pouring down. There was no where to run so Dave stuck Lauren under a table. He took off his shirt and draped it over Carmen’s stroller. We stood there, literally getting soaked for 5 minutes or so. Our hotdogs blew away in the wind! The rain finally stopped and the sun came out. Lauren had fun jumping in the bouncy house and getting a face-painting (a purple heart with sparkles). Carmen fell asleep. All that rain must have worn Carmen out!

Speaking of Carmen, she is doing well. She continues to have daily seizures but they aren’t too bad. Her breathing is labored but no worse than her “normal.” She is on continuous oxygen and I hope this makes breathing less work for her. She does have a stubborn case of thrush that Nystatin and probiotics are not getting rid of. Maybe we can get something stronger. I suspect the frequent nebulizer treatments (every 4 hours, around the clock) are not helping.

I’ll share something funny from Lauren. I took Lauren to Rita’s for frozen custard and Italian ice. We needed to hurry home because a friend was watching Carmen and had to leave for an appointment. We got chocolate custard with sprinkles for Lauren and cherry Italian ice for me and got back in the minivan. I realized we had a few minutes so I told Lauren we could eat in the van. Lauren said, “Well, we need to go home because I might be expecting a phone call.” I asked, “Who are you expecting a phone call from?!!” Lauren answered, “I don’t know. But, I might be expecting a call.” Wow, four years old and expecting phone calls!

Tuesday Dave and I have a funeral home appointment. We decided to make as many decisions as possible while Carmen is doing fairly well. I’ll feel better knowing we are as prepared practically as possible.

Last week Lauren and Carmen got a fun package in the mail. Dee, mom to 4 kids including a daughter from Guatemala, sent the girls plastic totes decorated with their names. Lauren’s is pink with fairies and Carmen’s is orange with flowers. Lauren’s was filled with fun crafts and a wedding-day Barbie. Lauren LOVES her Barbie! Dee sent money for us to buy something for Carmen. I know just what Carmen needs for the summer- a swimsuit! I’ll try to find an orange suit as orange is my very favorite color for Carmen! Thank you Dee! You are truly an angel who makes our days brighter!

To my friend Christina in the Land Down Under, I thought of you today when I had pink lemonade! I surely miss the days of popping over to your house and talking about whatever and drinking pink lemonade.

Tuesday, May 27, 2008

With much sadness, I share with you that another Tay Sachs child has passed away. Bryan, a beautiful 6 year old boy, passed away May 18th. He is in Heaven now with his older brother, Brandon, who died in 2005 at 5 years old from Tay Sachs. We ask for prayers for our friends, Mario and Marlin who have endured more than we can imagine. Mario and Marlin are Guatemalan and we had the absolute pleasure of meeting them and Bryan in March at the Tay Sachs conference. They traveled from Guatemala to the conference in Florida. We pray for God’s love and comfort to surround them as they go thru this very painful time.

Wednesday, May 21, 2008

Please pray for one of our heroes and his family. Today, Steven Curtis Chapman’s youngest daughter, Maria, was killed. The Chapmans adopted Maria from China. The Chapman’s teenage son was driving down their driveway and accidentally hit Maria. She was just 5 years old. Click here to read the full article.

Tuesday, May 13, 2008

HOORAY!!!!!!!! Yesterday Carmen’s insurance case manager called and our insurance is going to cover both private duty night nursing and Hospice!!!! Huge thanks to Dr. Dubelman who worked on this for us. Thanks to the medical director who understood what we need. Thanks to Carmen’s case manager who called us and said she just couldn’t wait to tell us. And, most of all thanks to God who daily shows me just how much He loves us. We love Carmen so very much and He loves her even more.

One of these days I am going to learn to truly trust God and stop worrying and stressing. He has provided so much for Carmen. The next challenge that comes our way, someone please remind me that God ALWAYS takes care of the situation! Maybe not always the way I would have expected or even liked, but always the best way.

Monday, May 12, 2008

Carmen’s seizures have come back in full force. We got them under control with Phenobarbital for a couple of weeks and then a few days ago, she started having small ones throughout the day. Facial twitches, 2-3 minute shaking, holding her breath until starting to turn blue, etc. Yesterday, the big ones started again. From what I have read, it seems that Carmen is having tonic-clonic seizures in clusters (formerly called Grand Mal seizures). I emailed her neurologist and she is going to call me today.

I sure hope this isn’t a pattern. We add a new seizure medication and Carmen’s seizures stop for a couple of weeks. Then, new and different seizures start. Then, the bad ones start again. Not fun.

I just got an email from Carmen’s neurologist and we are going to increase her Phenobarbital to 7 mls, twice per day. Hopefully this will get the seizures back under control.

Sunday, May 11, 2008

Happy Mother’s Day!!!!!!!! We had a very relaxing Mother’s Day. We went to Panera for bagels and ate them in the van. Then we went for a nice drive out in the country. We drove to the river and Lauren and Dave threw sticks into the river. It was raining so I waited in the van with Carmen. Lauren did not want to leave but we told her we would bring her back sometime soon for a picnic by the river. For dinner, we ordered El Salvadoran food. Pupusas are yummy!

Check out Carmen’s video. Dave finished it on Mother’s Day! http://www.beautifulcanvas.org/our_videos.htm

Mother’s Day is bittersweet for me. After having miscarriages, I dreaded Mother’s Day. I dreaded going to church and seeing all the moms standing up while everyone clapped. I still cringe every year for the women who cannot have children or who have lost children. At the same time, I am very thankful that I am a mom on Mother’s Day. I have two beautiful daughters and my favorite job in the whole wide world is being a mom.

Both my mom and Dave’s mom are good cooks. I am going to post two recipes, one from Dave’s mom, Grace, and one from my mom, Charlotte.

Grace’s Fabulous Easter Ham
(This is soooooooo yummy!)
1 cooked spiral sliced ham
1 can sliced pineapple, reserve juice
Brown sugar
Cloves

Place ham in large casserole dish. Stick cloves all over ham. Secure pineapple slices on ham with toothpicks. In small saucepan, combine pineapple juice, brown sugar to taste and a little water if needed to make a nice sauce. Bring sauce to a boil and cook until thickened. Pour sauce all over ham. Follow ham instructions and cook until warmed thru, basting occasionally with juice.

Charlotte’s Lentil Soup
(This is super good and healthy and I could eat it for lunch every single day!)
1 large sweet onion, chopped
4 cloves garlic, minced
Lots of celery
2 T. olive oil
1 package frozen chopped spinach
1 bag lentils, rinse
2 T. salt
14 cups water
1 large can diced tomatoes

Saute onion, garlic and celery in oil. Add all other ingredients. Cover and cook until lentils are done, about one hour. (I don’t like celery so I cut it into huge strips and then take them out after the soup is done.)

Thanks to my mom and mother-in-law for all you have taught me. I consider myself very blessed to have both of you in my life!

Friday, May 09, 2008

Today I went to Lauren’s preschool for the Mother’s Day Tea. The lights were off and the class tables were decorated with candles, flowers and gold heart place mats. The kids were the servers and Lauren brought me muffins and a Hershey’s kiss. Lauren gave me a special Mother’s Day card and Mrs. Ellis and Mrs. Rubio gave me Cynthia Heald’s book Becoming a Woman of Purpose. What a special day!

A very special little boy is now in Heaven. Samuel fought cancer (Acute Lymphoblastic Leukemia) for several years. Despite everything they have gone thru, the family has remained faithful. I have followed Samuel’s story for several years now and he and his family are an inspiration to me. Click here to view Samuel's website.

I have to tell you about our horrible mishap a couple of nights ago. I only do so to hopefully keep someone else from making such a dreadful mistake. I still get chill bumps when I think about it. And, to be honest I am mortified by my own mistake. After the night nurse arrived, we were setting Carmen up for the night and I was setting up the oxygen. We got a humidifier canister for the oxygen machine so that the oxygen does not dry out Carmen’s nose so badly. I thought I knew how to set it up. Carmen was in her crib and all of sudden totally freaked out. She is unable to verbalize but it was clear she was in distress. The nurse quickly leaned her forward because she was choking. I grabbed the suction machine and tried suctioning her out and she was gasping and spewing out water. We both realized that water was pouring out of the nasal cannula, directly into Carmen’s nose. I quickly disconnected the tubing and Carmen was able to get her breath. I had connected the tubing wrong and instead of oxygen going into Carmen’s nose, water was pouring into her nose. The good thing is that the water was coming right out her mouth but it was still absolutely the scariest moment we have had. And, I felt HORRIBLE. The following day the oxygen guy delivered a bunch of tanks and I asked him to take a look at the humidifier canister. Not only were we missing an adaptor piece but I had connected the tubing to Carmen’s nose to the water instead of to the oxygen part. Now it is all set and there is no possibility for such a mishap! So, that’s my PSA for the day. Make sure you know how to set up the humidifier to the oxygen machine!!!!!!!!!!!

Whew, now for something a little lighter. Yesterday the doorbell rang and both the Fed-Ex guy and the UPS guy were at my house! Between the two we had 6 big boxes in our foyer. Carmen gets medical shipments each month- formula, feeding bags, syringes, gloves, nebulizer sets, oxygen tubing, etc. Yesterday, everything came at the same time. Fed-Ex guy and UPS guy seemed to think it was funny. Oh, and the oxygen guy had already arrived with 6 oxygen tanks and they were still in the foyer, along with the big back-up tank.

Ha! Ha! Just as I was typing this up, the doorbell rang. UPS man was bringing 4 more packages. I think they are trying to take over my house!

Big thanks to Claudia for watching Carmen today while I went to the Mother’s Day Tea. The muffins are yummy and I enjoyed chatting with you! Dave and I so much look up to you and Eric.

Thursday, May 08, 2008

Carmen is doing much better. She hasn’t had a fever in 24 hours and seems almost back to her normal. She is still on oxygen and likely will remain on oxygen. This makes going out and about a little more complicated but I would rather carry another piece of equipment than know that Carmen is struggling to breathe. Carmen sounds labored and works her tummy and neck muscles to breathe despite the added oxygen but I don’t think it is quite as hard a struggle.

Please keep the whole Hospice/Private duty nursing dilemma in your prayers. We have a couple of possibilities in the works. We shall see.

As I am writing this, I am holding Carmen. She is such a soft and comfy baby! Lauren is at a friend’s house so I have some just me and Carmen time.

Lauren has been saying and doing some really funny stuff lately. Couple of days ago, I brought Carmen’s feeding pump downstairs and said, “Oops, I forgot the cord.” Lauren jumped up and ran upstairs to get it. Next thing I knew, the cord was plugged into the pump and the wall. I thanked Lauren and told her she is such a big helper. Lauren said, “Thanks mom! And I didn’t even get electriciteed!” We have had many talks about not sticking things in outlets and normally she is not allowed to plug/unplug anything. This time I just had to smile.

Tuesday we were all in the living room and Lauren was playing behind the couch. I realized she had been quiet a little too long so I peeked behind the couch. There was Lauren, scissors in hand, cutting her hair! Lauren has (had) waist length blond hair and according to Lauren she was tired of it being in her face and she needed a trim! So, my friend Lori came over yesterday and finished what Lauren had started. Lauren now has a super cute chin length bob. Lauren LOVES her new look and asked, “Do I look like a teenager now?” Eek!!!

Just so you know, Lauren was using her kid safety scissors. I don’t let her use my scissors. I am thinking that between the humidifier incident, Lauren plugging in the pump and Lauren cutting her hair that you are all going to think our house is in utter chaos and I am quite negligent. No worries. Usually things go much smoother around here!

This past Sunday Sarah from Soulumination.org came to our house and took pictures of our family. We have seen a few preview pictures and we are so excited! Sarah was so relaxed and fun and took 500 pictures in 2 hours! Thank you Sarah!

Thank you to Unjoo for the bulgogi! I am so impressed that you remembered that we love bulgogi! Thank you to Lori and Azeb for watching Lauren. Thank you to Karen for the yummy pasta/sausage dish and thank you to Tammy for bringing lunch today. It was great to catch up!

And a big thank you to Janice for the adorable Naartjie outfits! Lauren claimed the orange one and has worn it several times! That works out just fine because the bigger size fits Carmen. I’ll take a picture of the girls in their cute new outfits! Naartjie is my very favorite brand for my girls. Thanks so much!

Monday, May 05, 2008

Carmen is doing better. She is now on Azithromycin and it seems to be helping. Still on oxygen but did not have a fever after starting the new antibiotic today. She seemed uncomfortable today though and I am not sure why.

The verdict is in and our insurance will not cover both Hospice and private duty nursing. For a few days I had hope that the direction we are going would change and we could effectively handle Carmen’s care at home. We want to keep Carmen comfortable and really enjoy our time with her. No offense to doctors but running to one after another is not my idea of fun. I am TIRED. Maybe there is another way to have Hospice without losing our night time nursing. Please keep that thought in your prayers!

I feel totally torn between so many things and I really need to focus on giving Lauren the attention she needs. I have a hard time multitasking (isn’t that usually a “mom” trait? Seems I am missing that gene!) and often push Lauren to the side while trying to focus on whatever medical phone call or visit or treatment I am in the middle of. Tomorrow I am going to plop right down and play Polly Pockets.

It’s been a hard few days and we sure do appreciate all of your prayers.

Big thanks to Rachinee who so kindly picked up Carmen’s antibiotic (and invited the pharmacy employees to Carmen’s birthday party in July!) and entertained Lauren and Morgan for several hours. You have the gift of seeing a need and meeting it! I forgot to tell you that Lauren made an online Winnie the Pooh book and she had to pick a friend’s name to have in the book and she picked Morgan!

Sunday, May 04, 2008

Carmen is still sick. She is still on oxygen and having fevers. She had an allergic rash reaction to Ceftin, the new antibiotic, so hopefully we can get another antibiotic tomorrow. We have been able to keep her home and despite everything, she seems comfortable.

Yesterday we met with Hospice. I really hope we are able to get Hospice care for Carmen. We need so much to have more people in our lives who truly understand terminal illness and how to handle Carmen’s care. Hospice would help us manage Carmen’s care at home and cut down on doctor’s visits and hospital stays. As of now, I am running to 2-3 sometimes 4 doctors’ visits per week plus hospital stays every couple of weeks, mostly due to her increasing breathing difficulties. I am getting very weary and this is not the life we want for Carmen. And, this is not the life we want for Lauren. So, we wait to hear if our insurance will approve Hospice care and also allow us to keep Carmen’s night nurses. We know we cannot survive without sleep so the nursing care is imperative for us.

Thank you to everyone who has signed our guestbook!!! Thank you to Tana for watching Carmen and to Azeb and Karen for watching Lauren. And thanks to Monica for coming over “just because”!

Thursday, May 01, 2008

Please keep Carmen in your prayers. She is sick again, possibly pneumonia. We are watching her carefully tonight. She is on an antibiotic, steroid and continuous oxygen. If she gets worse, we will take her to the hospital.

We are going to try to get Hospice care very soon. Carmen’s pediatrician feels she may have 6 months to live. She could live longer, of course, but her breathing is getting worse and worse.

Thank you to everyone who signed our guestbook yesterday and today. I had no idea so many who have also adopted children read my journal. That means a lot to me.

Tuesday, April 29, 2008

Great news! Starting tonight we are getting 12 hours per night of nursing care, instead of 10. Carmen’s care is getting more complicated and I am so grateful to have help!

More great news: our landlords have asked if we would like to extend our lease thru June 2009. I have been so worried that we will have to move out this summer and either find a home to buy or rent. Right now the very thought of packing up and moving makes me nauseous so this is truly relieving.

Here’s my request for the day: lots of you read my rambling journal but don’t post in the guestbook. Dave and I see how many hits the journal gets each day. Most likely my mom and Dave’s mom are responsible for a good number of those hits but probably not hundreds! So, please introduce yourself and leave us a message. And those who have already left messages, feel free to leave another one! (You can leave us a message every single day if you would like!) We love reading the messages and knowing that so many share this journey with us.

Monday, April 28, 2008

Carmen is home! She is doing much better now and hopefully will stay that way for a long time.

I want to say that we have had a very wonderful experience with the Shady Grove Hospital PICU staff. I was initially concerned about having Carmen at a local hospital instead of at Children’s but the service is wonderful. And, it’s great to be 10 minutes from home versus an hour. The doctors and nurses all know Carmen now and are willing to help in any way they can. I am very comfortable with the care Carmen receives. The nurses are very quiet at night and continually ask if I need anything. They usually bring breakfast, lunch and dinner for me and if I want a salad instead, the cafeteria is very reasonably priced. I think I will send them a big thank you!

I am going to talk to Carmen’s pediatrician tomorrow about ways to reduce her reflux and hopefully help her breathe better. Carmen seems to have a lot more respiratory issues than other children with Tay Sachs and I am not sure why. She does have a variation of Tay Sachs so maybe that accounts for all of her upper airway trouble. Honestly, I suspect that Carmen will not be a child who lives a long time. She is having so many problems with breathing now and is just 21 months old. We will continue doing every thing we can to help her and keep her comfortable. God knows how long she will be with us. All we can do is enjoy each day with her.

We got the extra suction machine today and I am just thrilled to have one for home and one for the car! The suction machine can be used plugged in or battery back-up. We do have outlets in our minivan but I will try my best to keep the machine charged!

Thank you to Sarah and Karen for watching Lauren today!

Sunday, April 27, 2008

We took Carmen to the ER last night. After 3 doses of Augmentin for ear infections, she broke out in a rash from head to toe, literally covered in spots. Her breathing was more labored than usual and then her oxygen went down. I gave her oxygen but her levels stayed low. I called Alice, a nurse I know from church, and she came over. She felt that Carmen needed to be seen so we took her to the ER and she was admitted. Hopefully, she will get to come home tomorrow. She is doing much better today after IV antibiotics, a ton of nebulizer treatments and oxygen.

We really hope to be able to keep Carmen home and out of the hospital. I am going to talk to her doctors about getting everything possible in our home so that we can treat problems as they occur and avoid ER visits! Dave especially is concerned that all the hospital visits are unfair to Carmen- she gets poked and prodded and kept awake. And, it’s so hard on Lauren to have me gone.

One funny thing that happened in the hospital: we were waiting in the ER and a receptionist found us and said that a lady named Shar from Church of the Redeemer was on the phone for me. I thought, “How could Shar have possibly known we are at the emergency room?!” I asked and Shar said that she called our house and we weren’t there so she tried the hospital and there we were! Shar and Rick came up to the hospital and then Shar stayed with Carmen and me until 3am! Thank you so very much, Shar. You did NOT have to do that and I did keep trying to send you home. But, it was wonderful to have company and I enjoyed our talks!

Please keep Carmen in your prayers. We hope she is home ASAP.

Saturday, April 26, 2008

Carmen has double ear infections. I sure am glad I took her to the doctor yesterday! We started her on Augmentin last night. She had a rough night last night with lots of congestion. Poor baby!!!

We switched from Albuterol to Xopenex because Albuterol makes Carmen’s heart rate go way too high, especially while sick. For the past few days, her resting heart rate has been in the 140s and 150s and then adding Albuterol on top of that shoots her rate up to the 170s and 180s for an extended period of time. Hopefully the Xopenex will keep her more relaxed.

I am happy to say that we are getting an extra suction machine. I found one on Craigslist for a reasonable price so the nice lady is sending it to us. We have one in Carmen’s room and I get tired of hauling it all over so we will either keep the extra in the living room or in the minivan. By the way, thank goodness we have a minivan! Carmen’s Kid Kart stroller is so big and all I have to do is put the backseat down and then use all of my muscles to lift it up! I don’t even fold it up which is great because to fold it I would have to take the stroller seat off and while that is easy, it’s just one more hassle.

If any of you have suggestions on a car seat that might work for Carmen, please let me know. Carmen is rear facing in a Britax Marathon and that is working for now. Once she gets to 33 lbs. though the seat has to be forward facing and Carmen doesn’t have enough upper torso and head control to sit forward in this seat. We tried out the Britax Traveller Plus special needs seat but Carmen’s head immediately fell forward. Any suggestions???

Big Elise, a 5 year old with Tay Sachs, has been sick with MRSA, a staph infection in her lungs in the form of bronchitis. Please keep her in your prayers.

Thank you to Wendy for watching Carmen this week! And thanks to Monica for coming over to play with Lauren yesterday while I took Carmen to the doctor. I have a feeling we will be watching Fox and the Hound #2 over and over and over and over and over!!!!!!

Thursday, April 24, 2008

Wow, I haven’t updated in a long time! Lots of stuff has happened and we have been super busy!

First of all, please keep Carmen in your prayers. She is sick again. Maybe it is just a bad cold but her resting heart rate is way too high. Last time this happened she had RSV and ended up hospitalized for 4 days. I will take her to the doctor tomorrow to make sure she is seen before the weekend.

Happy 21st month birthday to Carmen! We missed it by a couple of days but always want to celebrate each day and month with our very special little girl. Thank you to Mrs. Ellis for reminding me today that Carmen truly is a gift and that we will look back on this experience as “the gold” in our lives.

Couple of weeks ago, Carmen had an appointment with a complex care team at Children’s. This was a really great appointment with a new neurologist and complex care pediatrician. Carmen is now on Phenobarbital for seizures and it is helping tremendously. She has only had one seizure since getting the Phenobarbital up to an effective dose. Only issue is that the medication is making her drool constantly so we have started her on Robinul, an anti-secretion drug. It is working really well but we have to make sure we don’t give her too much and dry her out. Everything is a balancing act!

We have finally found a potential reason for Carmen’s ever increasing strider (loud breathing). We took her to an ENT on Monday and got no answers so Carmen’s pediatrician recommended another ENT doctor. I took her today and this doctor took one look down Carmen’s nose and said her airway is extremely swollen due to acid-reflux and that is why her breathing sounds so very labored. Carmen is on two different acid-reflux medications so I thought the reflux was under control. So, back to the Gastro doctor we go and hopefully we can find something that works.

We got the Vest!!! We asked Carmen’s complex care pediatrician if she could fill out the paperwork for Carmen to get it and just a few days later it was on our front porch! The same day we got a letter from our insurance approving it! This is super news. The Vest jiggles up the mucus and will help keep Carmen’s lungs clear. A big thanks to Tricia, Carmen’s insurance case manager, who clearly gets things done and FAST!

Yesterday Dave and I had the honor of speaking to my MOPS (Mothers of Preschoolers) group. Before we found out Carmen has Tay Sachs, I had this dream that we would have the wonderful happily-ever-after adoption story and everyone would be inspired to adopt because of Carmen. We have a very different story than I ever thought. It’s far more painful and difficult and just plain not fair. To be perfectly honest, we would not have adopted Carmen had we known she had Tay Sachs. We requested a healthy infant girl. But, knowing Carmen for the past 16 months and loving her and seeing the blessing she brings to our lives and how much she is teaching us, we are so very thankful that Carmen is our daughter.

Thanks C.F. and Monica for coming to our presentation! Dave was very happy to have another man in the room! Monica thanks so much for the flowers! I felt like I was getting an award! Ha! And thanks to the MOPS moms for the gift certificate to Thai Farm and for babysitting. I suspect Karen was behind that. She knows us well.

I want to close by thanking Sandra for coming over and cleaning my house last week! Sandra is a beautiful lady from our church and she has been asking how she can help us. So, I asked if she could watch Carmen while I cleaned my house. Well, she showed up with bagels and coffee and insisted that she was going to clean. I cannot tell you how wonderful it felt to have a clean house! Thank you so much Sandra for your servant’s heart. I’ll never forget “Maria” cleaning my bathrooms in her heels! By the way, the octopus is still growing in our bathtub!

And, thanks to Marcella for watching Carmen last week and Tina for the Coke for Dave. Tina found Coca-Cola in the Passover section at the grocery store that is made with sugar instead of high fructose corn syrup. Dave said it tasted like the stuff in Guatemala! Thanks also to Tatiana, Rachinee and Karen. Lauren spends so much time with you and I so much appreciate your willingness to be a second mom to my Princess Lauren!

Monday, April 07, 2008

Carmen had a post-hospital doctor’s visit today and she is doing well! She still sounds like she is laboring hard to breathe but she is back to her “normal.” She has an ENT appointment in two weeks to try to figure out what is causing her crazy loud breathing. Until then, we will continue with Albuterol every 4 hours.

Big thanks to Lori for dinner last night (apples in tossed green salad is my new favorite!) and to Rachinee and Wendy for dinner tonight. Chicken Parmesan is Dave’s very favorite. Doug, Dave’s dad said it’s his favorite too! Thanks to Ritha for taking Lauren for the day yesterday. She had a wonderful time and I had a wonderful afternoon nap. Good thing too because Carmen’s night nurse did not show up so I stayed up last night with Carmen. Thanks to Rachinee for taking Lauren today while I took Carmen to the doctor. What would I do without you guys??????!!!!!!!!

Here’s a summary of our wonderful one day trip to Disney last week:

Our Disney World trip (March 31, 2008)

Sunday after the Tay Sachs conference ended, we drove to Orlando. We got up bright and early on Monday and headed to Disney World. We did not tell Lauren ahead of time that we were going to Disney, just in case our plans fell thru. We decided it would be fun to keep it a secret until we drove thru the gates! As we drove down the road to Disney, Lauren asked, “Why do all the signs have Mickey ears on them!?” Lauren kept asking where we were and I asked, “Where do you think we are, Lauren?” Lauren yelled, “Boston!” When we stopped to pay the parking toll, Lauren said, “That sign says Magic Kingdom!” (She informed me that she sounded it out. I did not know she could do that!)

We had a wonderful day! Lauren was so ex cited to see Cinderella’s Castle. She and Dave road the carousal and we stood in line to meet Darby, Pooh and Tigger. After meeting Darby, we started to walk away and Darby ran after Dave. She pointed to his University of North Carolina t-shirt and gave two thumbs up! (Darby and Dave must both be in mourning today after UNC’s loss.)

While we were looking around one of the souvenir shops, Lauren was asked to be in a little parade around the shop. She was thrilled to dress up as a princess and march around the store. Lauren has been all about Cinderella and Sleeping Beauty in the past but is now mesmerized by Ariel. So, she picked out an Ariel pin for Carmen’s stroller sunshade, an Ariel Polly pocket type set and an Ariel wand.

We watched the Dreams Come True parade and had a great view because they put us in the handicapped section. Carmen’s Kid Kart stroller does look special needs so we were often directed to the handicapped section. We were very appreciative of this special treatment! A heads up to anyone with special needs kids visiting Disney, I changed Carmen’s diaper several times in the First Aid station. This was much easier than trying to put a 30 lb. baby on a tiny changing table! The First Aid station had private rooms with beds to put Carmen on.

For dinner, we had reservations at the Crystal Palace. Pooh, Tigger, Eeyore, and Piglet came to our table while we were eating. Eeyore gave Lauren a big hug and Pooh held Carmen’s hand. The food was good at the Crystal Palace. It was buffet style and had everything from salmon to chicken nuggets. I especially liked the corn spoon bread.

We ended our day by taking the ferry back to our van. We are so glad we went to Disney and made special memories. We took lots of pictures and video that we will always treasure.

Tuesday morning we got up and headed home. We left around 9:30am and got home at midnight. It was a long day but both girls are wonderful travelers. I am far grumpier on long trips than Lauren or Carmen!

One thing we took away from this trip is that we want to do as much as we can while Carmen is alive so we do have the memories. It’s not easy traveling with all the equipment and being on our own at night (without nurses) but we can try weekend trips.

Sunday, April 06, 2008

Now that Carmen is home (and thank you again for all of your prayers!), I’ll write a novel about our fabulous Florida trip for the annual Tay Sachs family conference! I know you have all been anxiously waiting- ha, ha!

We packed our minivan full and left Maryland Wednesday at 2pm and made it all the way to Savannah, Georgia. We stayed the night in Savannah and the next morning took a quick tour around the town. I would really like to come back to Savannah. I love old southern towns. Beautiful houses, trees, flowers, southern restaurants, etc.

Thursday we drove to Tampa and settled into the Tampa Marriott Waterside Hotel and Marina. Well, more like we dumped out stuff into our room and took off for dinner! We were happy to see Dr. Tifft, Carmen’s geneticist, and Stephen and his family (an adorable little boy with GM1-Gangliosidosis, who lives 10 minutes from us). We had a wonderful dinner (ribs and chicken) and met a few families.

This year 19 children with Tay Sachs or a related disease attended the conference. Along with parents and siblings, some grandparents, aunts, uncles and friends also attended. I was pleased to also see that so many families come back to the conference each year, even after their children pass away.

Friday morning we met the other families in an emotional parents’ session. This session was made up of both families with living children and ones who have already passed away. Each family told their story and many tears were shed. I felt like I was in the presence of greatness. Great strength, compassion, perseverance, and love. These are parents who have become true Tay Sachs experts and medical care. Oh, and they could probably teach a class on fighting insurance companies too!

Friday afternoon we attended a round table discussion on the research being conducted to find treatment and ultimately a cure for Tay Sachs. I think the conclusion is that in 3-4 years a drug may be available to break down gangliosides, the fatty stuff that builds up and causes the extensive brain and spinal cord damage in Tay Sachs patients. This time-frame would be best case scenario. It may take much longer to find a cure but we can always hope!

During the day on Friday, Lauren went to Kiddie Corp, the camp for healthy siblings. Lauren had a blast! As soon as we would pick her up for lunch, she was ready to go back! The kids played games, made crafts, watched a movie, etc. Carmen stayed in the nursing care room. A group of fabulous nurses volunteered to care for the children. I picked up Carmen after the morning session, and she was lying on the bed with Rachel, a 9 year old with Canavan Disease. I wish I had taken a picture or videotaped the moment. Carmen and Rachel were facing each other and Carmen’s hand was touching Rachel’s face. It was a precious moment. One of the nurses, Franci from Alaska, spent a lot of time with Carmen and we hope to keep in touch.

Friday dinner was the only meal not provided by the conference so we ordered room service and put the kids to bed! Lauren usually goes to bed by 7pm and desperately needed a good night’s sleep! My usually calm, happy child was having massive meltdowns!

Saturday morning we kept Carmen with us and attended a discussion/presentation on symptom management. We watched a video, Cameron’s Arc: Creating a Full Life about a family who chose less intervention for their daughter. This video really spoke to me. I often question how much medical intervention is too much. After the video, Big Elise’s (a 5 year old with Tay Sachs) nurse spoke about the therapies and equipment used to keep Elise alive and comfortable. I was happy to learn more about the treatment options. It is very hard because part of me wants to use everything possible to keep Carmen with us. But, I think about Carmen’s future quality of life and the reality of Tay Sachs. As of now, our goal is to keep Carmen comfortable and we will use what therapies accomplish that goal.

During the symptom management class, Eric and Nicole, Rachaeli’s parents held Carmen. Rachaeli is a beautiful 5 year old with Tay Sachs. We enjoyed getting to know this lovely family. The conference truly would not be the same without Eric’s philosophical comments and wit and Nicole’s quite, steady calm. www.rachaeli.com.

Saturday afternoon, Dave took Lauren swimming and I went to another parents’ meeting. After the meeting, we went to a Celebration Dinner. I spent some time talking with Little Elise’s (a 3 year old with Tay Sachs) mom. A few weeks ago, I saw a picture of Elise on her website with a Critter Piller neck pillow. I ordered one for Carmen, a pink puppy, and it works fabulously in her Kid Kart.

Sunday brunch we said our goodbyes and took lots of pictures. It was sad to say goodbye. This conference was the one place where our lives are “normal.” We met many wonderful families and to each family, thank you for sharing your story and your children. If I try to name each of you, I am sure I will leave someone out so I will just say thank you.

Thank you also to the families who brought gifts. RJ’s mom gave Carmen a stuffed horse with an RJ pin, Rachaeli’s dad gave Carmen fuzzy socks, PJ’s dad brought pillows with a hole cute out for ears (PJ’s mom made the pillows), and Dakota’s dad gave us a short pole to attach her feeding bag and pump to a stroller (Ken made these himself!).

I want to close my Tay Sachs Family Conference summary by thanking Mario and Marlin, Bryan’s parents from Guatemala. Mario and I have been emailing back and forth for several months. A while back, Mario offered to try to find Carmen’s birth mom to tell her about Carmen’s disease and that she is a carrier. If Carmen’s birth mom was to have another baby with Tay Sachs, AB Variant, she would know what was wrong. I prepared all the paperwork that might help Mario find her and Dr. Tifft wrote a letter explaining the disease. My friend Milagros translated everything into Spanish. I filled a photo album with pictures of Carmen and our family for Carmen’s birth mom. We gave everything to Mario and Marlin and as Marlin looked at the photo album, she cried. Thru a translator (Ruben, RJ’s dad), Marlin said that Carmen would not have had care in Guatemala and how happy she is that Carmen is with us. Marlin and Mario have been thru so much. Their older son passed away from Juvenile Tay Sachs and now their precious younger son fights the disease. Yet they have smiles on their faces and huge hearts. We told them we would like to give them some money to help with the expenses of conducting a search and Mario said no, we are family now. So, to our new family, thank you.

Saturday, April 05, 2008

We are HOME! Carmen was discharged this afternoon. She sounds like she is in horrible distress but her heart rate is back to normal and oxygen levels are fine. She took an afternoon nap and was at 99% oxygen and 100 heart rate, which is fabulous! We are to keep her away from other children until she is cleared by Dr. Pedreira so I will take her back to the doctor on Monday or Tuesday.

Thanks to Michelle for dinner and to Claudia and Eric for the yummy cake! I can see why that is your favorite German dessert!

I can’t remember if I mentioned that my father-in-law is here to help with Lauren and whatever we need. He is always ready and willing to jump in the car and drive 6 ½ hours from New York to help us. He is a huge help and Lauren LOVES having her Grandpa here to play tea party and tent and Prince and Princess. Thanks Doug!

I will be typing up a summary of our Florida trip to the NTSAD conference (Tay Sachs conference) and to Disney World, so stay tuned!

Friday, April 04, 2008

Carmen is doing much better today and might go home Saturday or Sunday. The doctors are weaning her off the oxygen and she is doing well. She has slept most of today which is good. Yesterday she was so restless she could not relax but today she is much calmer.

Last night Carmen had a 25 minute seizure. We (a nurse, doctor and me) watched her carefully. She did not seem uncomfortable and was not in distress, so we waited it out. We could have given her Valium to stop the seizure but we did not want to further compromise her respiratory status. Carmen has an appointment Friday with a white matter specialist neurologist so we hope to get her on a seizure meds cocktail to control these long seizures. Right now she is just taking Keppra for seizures.

Carmen will be seeing an ENT shortly after discharge. Looks like we will be able to get her in quickly (being in the hospital always speeds up appointments!). Her stridor (loud, high-pitched breathing noises) is getting worse. From what I have seen, Carmen seems to have more of a problem with this than other Tay Sachs children.

I am also hoping we can push forward with getting The Vest approved by our insurance. The Vest is basically a more effective way of doing manual chest physical therapy to loosen up junk in the lungs. Once the mucus is loosened up, it can be suctioned out. The Vest is a modest $16,000 (ouch!).

Pastor Joey came to visit Carmen this morning. We had a wonderful visit. I think I looked frightful in my pajamas and with my wild hair mess! Oh well, humility is good for the soul, right?!

Thank you to Kobe for dinner! We really enjoyed that taco meat! And, thanks to Indira for taking Lauren for a playdate today. Thank you to Karen for taking Lauren yesterday. She said you fixed her hair!

I want to also thank Dee, my friend who also adopted a little girl from Guatemala. Wednesday after Carmen was admitted, I rushed home to get some clothes for the hospital. Lauren was falling apart tired and in no mood to let me get anything done. A package had come from Dee so I opened it and Lauren had a blast playing with all the girl stuff from Dee! I was able to pack everything up and could hear Lauren happily organizing all of her new treasures and playing make-up! Thank you for the jacket for Carmen. We have had some wet, windy days lately and this fits her perfectly.

Thank you for all of your prayers for Carmen! They are working.

Thursday, April 03, 2008

Yesterday I took Carmen to her pediatrician because her normally heavy, noisy breathing seemed more labored than usual. Dr. Pedreira took one look at Carmen and called 911. Carmen was taken to the hospital by ambulance and Lauren and I followed. Carmen has RSV and will be in the hospital in the pediatric ICU for at least a few days. She is getting high-flow nasal canula at 10 liters to open up her lungs. Yesterday she was working hard to breathe. Today she is still having periods of rapid breathing but seems more comfortable now.

I feel horrible because this really snuck up on us. I had no idea Carmen was so sick. I waltzed into Dr. Pedreira’s office all ready to tell him that I wanted Carmen to see an ENT for her increasing stridor (loud breathing). We met children with Tay Sachs this past weekend and none had Carmen’s noisy breathing. I guess her “normal”, noisy breathing had turned distressed but I didn’t catch it. The doctors think Carmen was exposed to RSV this past weekend while in Florida. I am hoping none of the other children at the Tay Sachs conference get sick too.

Thank you to Sarah for coming to the ER to take Lauren for the day! She had a blast! And thank you to Shar and LaToya for visiting us and for lunch. Thanks to Karen for dinner last night and today. And finally, thanks to Monica for coming to visit today! You are so much fun to talk to!

I had a whole lot to say about the Tay Sachs conference but will have to wait until I get home.

Please keep Carmen in your prayers. It really hit me yesterday that I am not ready to let her go.

Sunday, March 23, 2008

Happy Easter! We have a full house with Great-Grandma, Grandpa, Grandma and Aunt Ruthanne! Hope you all have a wonderful Easter Sunday.

Saturday, March 22, 2008

Sorry for the lack of updates! Just as Dave and Lauren got well, I got sick! Wednesday, my father-in-law drove from New York to help me with the girls. I feel a lot better now and as long as Carmen stays well, we will be going to the NTSAD (National Tay Sachs and Allied Diseases) annual family conference in Florida. We are very much looking forward to meeting other families and spending time in sunny Florida. I have about a million questions about how best to care for Carmen.

Carmen continues to have seizures despite the increase in seizure medications. Hopefully we will find something that helps her. She stops breathing during seizures several times per day but always snaps out of it without intervention.

Carmen finally got her Kid Kart adapted stroller this week! I am happy to say that we really like it. Carmen seems very comfortable and breathes well in her stroller. Plus, it is nice to have her sitting high up so she can be part of meal-time and other activities. A different headrest has to be ordered because the tiny one that was originally ordered does nothing to keep her head in place. In the meantime, we have her pink doggy Critter Piller wedged into the seat to keep her head upright!

For those who attend our church, check out page 16 of the new Connections magazine! Susan did a great job interviewing us and writing the article and thanks to Melanie for letting COR use the pictures! Lauren was THRILLED to see herself in a magazine. The article is about our involvement in small groups in our church and our journey with Carmen.

Thanks to Monica for watching Carmen this week while Grandpa and I took Lauren to the dentist! I really do not know what I would do without our Hospice Angel!

Ritha, Salih and Bianca, I hope you enjoyed the Easter presentation! I am sorry I missed it but I did not want to cough all over everyone!

Thursday, March 20, 2008

Happy 20th month birthday Carmen! You are so sweet and so content and we love you lots!!!!!!!!!!!

Saturday, March 15, 2008

Dave and Lauren are FINALLY feeling better! I aired out the house yesterday and cleaned everything with Clorox and Lysol so hopefully I have killed the germs in here! Thanks to everyone for your prayers. So far, Carmen and I are feeling well.

Couple of nights ago, Lauren woke up and asked for water. After she took a sip, she said “Delicioso!” and immediately went back to sleep!

Thank you to our friend, Indira, for bringing dinner tonight! The chicken noodle soup was yummy and the biscuits were perfect! Tell C.F. thanks for plucking the chicken and we hope he enjoyed his biscuit!

Just for fun, here’s a recipe that I recently found. I have made it twice, once for a party and once for a new mom. It’s yummy!

Moroccan Meatballs with Apricots, Tomatoes, Almonds and Rice
1 lb. lean ground beef
¾ tsp. salt, divided
¼ tsp. ground cinnamon
¼ tsp. black pepper
1 Tbsp. olive oil
1 small onion, diced
1 cup sliced dried apricots
½ tsp. red pepper flakes
½ tsp. ground ginger
1 large can (28 ounces) diced tomatoes, undrained
Basmati Rice
¼ cup sliced almonds, toasted

1. Preheat oven to 325 degrees.
2. Combine ground beef, ½ tsp. salt, cinnamon and pepper in bowl. Shape into 1 inch balls. Heat oil in large skillet. Add meatballs, brown on all sides. Remove to plate. Add onion and apricots to skillet. Cook 5 minutes or until onion is tender. Stir in tomatoes with juice, remaining ¼ tsp. salt, pepper flakes and ginger. Simmer 5 minutes.
3. Meanwhile, cook 4 cups of Basmati Rice (I use a rice cooker).
Spoon cooked rice into 9x13 pan (if it doesn’t all fit, you can use two pans, whatever sizes work to fit all the rice. Or, you can use less rice and have more topping.). Top with meatballs, spoon tomato mixture over meatballs. Bake for 20 minutes or until meatballs are no longer pink in center. Sprinkle with almonds.

Thursday, March 13, 2008

Dave and Lauren both have the flu. Seems the flu shots were not effective this year. Yesterday morning, Dave went to the doctor and tested positive for the flu. A very kind friend, LaToya, drove him to the doctor. Thank you so much LaToya! (And thank you to Shar for being in your office and so quickly finding LaToya!) Lauren was feeling horribly and Carmen was asleep after staying up for much of the night and it was such a HUGE help to know Dave was being taken care of! Yesterday afternoon, I took Lauren to the doctor and she also tested positive for the flu. I am loading all of us up on Vitamin C and other good for you stuff!

A big thank you to my friend, Karen, for showing up with dinner! (Thin mints are my favorite Girl Scout Cookies!)

I reread some of my journal entries and wanted to clarify something I wrote. A few entries ago I mentioned that Dave and I are hoping to someday help families adopt, in Carmen’s honor. I also said that many of the families affected by Tay Sachs make it their life mission to search for a cure but that Dave and I are thinking of focusing on adoption support. In hindsight, I think saying that could be offensive to those families who are investing so much emotion, energy, time and money towards a cure. I am sure that for the rest of our lives, Dave and I will support the search for a cure. A variation of this disease has forever changed us and without a cure, will take our precious daughter. So, I apologize if I came across as downplaying the importance of the search for a cure mission. The families involved are amazing and unwavering in their dedication to this very, very important cause.

Last night Dave, Carmen and I watched American Idol. I have watched AI since the first season and look forward to Tuesday and Wednesday nights each week! Lauren goes to bed by 7pm each night but Carmen is often awake later so Carmen gets to experience American Idol! This season, I really like Brooke White, Michael Johns, David Cook, Jason Castro, Carly Smithson and the cutie-pie David Archuleta. I thought Chikezie did a great job this week too! Usually I only really enjoy one or two singers each season but this season I like half of them!

A little girl named Brooke from New Zealand lost her battle to Sandhoff disease this week. Sandhoff is similar to Tay Sachs. The funeral is tomorrow (Friday) and she would have celebrated her 2nd birthday on Saturday. Please keep Brooke’s family in your prayers.

Tuesday, March 11, 2008

Today Dave was home sick, very sick. Lauren also spiked a fever again. So far Carmen is fine. I am doing ok although I am very tired. Tomorrow morning I am going to try to get them both in to see the doctor. Lauren had gotten so much better yesterday, no fever, and running around playing. I thought she had a 24 hour bug. Seems this is much worse.

Please keep us in your prayers!

Monday, March 10, 2008

Good news and bad news. The good news is that Lauren is feeling much better! She must have had a 24 hour virus as she is now mostly back to normal. Bad news is that Dave is starting to feel sick. Really good news is that Carmen is fine so far.

Carmen’s seizures are still bad. She had three today and one lasted 11 minutes. I wouldn’t worry so much because they don’t seem to bother her anymore but she stops breathing at the end of each one and that is SO scary! It’s scary to live in a constant state of possible emergency.

Someone asked me which part of Carmen’s care is the most difficult. For now the hardest part for me is always being on alert. I know by her breathing and the sharp intakes of breath when a seizure is beginning. I know if she is properly supported while sitting and how her breathing sounds if she is slumping. I can listen thru the monitor and know she is asleep when her breathing relaxes. I watch her out of the corner of my eye. I feel like I KNOW this child. I don’t think I have ever listened for Lauren’s breathing or watched Lauren like a hawk. Very different parenting a healthy child versus a medically fragile one, that’s for sure.

I don’t think I wrote about Dave’s car accident last Wednesday. He was on his way to work and a car cut off a bunch of cars in front of him. As this happened, the lady beside Dave pulled in front of him and slammed on her brakes. Dave hit the back of her. He is fine, although a little sore for a couple of days. The Camry is not so fine and will need extensive front end work. It was an interesting morning because Dave called shortly before I was going to host a MOPS get-together and birthday party for my friend, Lori. Carmen was asleep and Lauren was at pre-school. I called my friend, Tatiana, and she rushed over to watch Carmen and heat up the food and let everyone in for the party while I went to pick up Dave! Thank you God for friends! And, thank you God that Dave wasn’t hurt. I don’t think I could handle anything happening to Dave right now. He gives me great stability during the storms of life. I freak out and fall apart and he is so relaxed and so confident and full of faith. I love you, Dave!

Speaking of Dave, I am very happy to say that Dave mailed his FINAL student loan payment today! Ten years of marriage this August and this is the first time ever that we have been student loan free! Hooray!

Lauren said something cute the other day. We were eating lunch and all of a sudden she asked, “Are you my birth mom?” In Lauren’s world, adoption is the norm. She has been asking for a brother named Carlos ever since we brought Carmen home!

Today Dave and Lauren were playing Polly Pockets and Carmen was on the floor next to them. Lauren loves to play like Carmen’s tummy is a big mountain and her dolls sit up on top of the mountain. Lauren thinks it is so funny when the big mountain moves and her dolls fall off! Carmen has a tummy that is very conducive to being a mountain! She is now wearing 3T/4T clothes!

I mentioned the “friend-raiser” that Ritha, Salih and Bianca hosted last week. Well, we got the total- $1100! Thank you so much! It meant so much to us that you did this for Carmen. Thank you again to Lucia and Rachinee who donated their profits. And, thank you to all of Ritha’s and Salih’s friends who generously donated.

Congratulations to our friends, Kerri and Lee, for their new arrival! Seth Thomas was born on Sunday and joins big sister Corinne and big brother Drew.

Saturday, March 08, 2008

We could sure use some prayers here! Lauren threw up and had 101 fever tonight during our church small group meeting (sorry Tina, I hope you don’t catch this!). She is asleep now. Please pray that Lauren will get better quickly and that Carmen will NOT get this bug. We don’t want to get it either but I worry most about Carmen getting sick.

I spoke too soon about the seizure meds working. Carmen is continuing to have daily seizures that last about 3 minutes and she stops breathing for a short period. These seizures are so scary!

If you would like to see an absolutely wonderful video about a baby born with Trisomy 18, click here to view "99 Balloons" on IgniterMedia.com. It’s a truly wonderful tribute to life. Thank you to Keith and Gail for telling us about this video. I cried and cried.

Sunday, March 02, 2008

First of all, the good news is that Carmen’s increased seizure medication (Keppra) seems to be helping. For the past few months, Carmen has been on a very small dose of Keppra. Over the next few weeks we will gradually increase the Keppra dose. She is still having daily seizures but they are not quite as intense. We now have Valium on hand for emergency use when Carmen has a seizure that won’t stop.

One of the ushers at our church asked us to come early today so the ushers could pray for Carmen. We managed to get there on time (you would think living 1.75 miles away would mean we could get to church on time!) and the ushers prayed for Carmen. Thank you, Gary, for arranging this. It meant so much to us!

Pastor Dale concluded his “Heaven Hope Us” series today and talked about Heaven being a place of joyous reunions. I think that after Carmen dies, Heaven will seem so much more real to me, a place I yearn for. Pastor Dale also talked about young children going to Heaven. In Carmen’s room, we have a wooden plaque with Matthew 19:14, “Jesus said, ‘Let the little children come to me, and do not hinder them, for the Kingdom of Heaven belongs to such as these.’” I love this verse. I bought this plaque several years ago in Lancaster, PA at an Amish shop. I picture Carmen running and playing and laughing in Heaven. What a wonderful hope!

After church, we went to our friends’ and former neighbors’ house, Salih, Ritha and Bianca. Ritha called me a few days ago to tell me that she was hosting a PartyLite candle party for Carmen thru Lucia, a PartyLite consultant. So, imagine my surprise when we pulled into our old neighborhood and Rachinee’s car was in Ritha’s driveway! (Rachniee is the Cookie Lee jewelry consultant who hosted Carmen’s first “friend-raiser” last month.) Ritha and Rachinee had gotten together and decided to do another “friend-raiser.” So, today’s party was a combination of candles and jewelry! Oh, and yummy food, of course. Salih made his famous guacamole. I could eat that guacamole every single day! Thank you so much Salih, Ritha, Bianca, Rachinee, and Lucia! It’s fun having friends from different walks of life all together! To Ritha’s former boss: We enjoyed talking with you and thank you so much for sharing your daughter’s story.

Last thought for today: many of the families affected by Tay Sachs and similar diseases raise money for education and testing and a search for a cure. As of now, Dave and I don’t feel a strong pull to go this direction. Instead, we are praying about helping people adopt. I have this dream that starting in a few years, in Carmen’s honor, we will raise money to pay for one international adoption per year. This seems huge as international adoptions are often $30,000+. But, I can’t think of a more wonderful way to make Carmen’s life really count than to help families bring home 30, 40, or 50 kids in our lifetime. This is something that we would never have thought to do had Carmen come home healthy. If God is in this, then we believe He will provide a way.

Sunday, February 24, 2008

We had a very busy week. New York Grandma and Grandpa came for a visit which is always an exciting happening in our home. The Prince and Princess dolls have many adventures when Grandpa is in the house! Grandma, Grandpa, Lauren, Carmen and I went to the Dutch Market and had lunch and did some shopping. Grandma introduced Lauren to chocolate truffles and Lauren was quite impressed!

A friend, Claudia, came over on Wednesday and worked on a school project for one of her Early Childhood Education classes. Claudia brought craft materials and observed Lauren building a castle, people, flags and a horse. Lauren had a blast! Monica (Hospice volunteer) also came over on Wednesday to help out. I worked on cleaning the bathrooms and Monica vacuumed! Thank you Monica!

Carmen’s seizures are increasing in number and intensity and duration. She now has a pulse oximeter so we are able to monitor her heart rate and oxygen levels. During the seizures, Carmen’s levels drop for the duration of the seizures- about 3 minutes or so. I am glad that Carmen’s neurologist appointment is this Wednesday.

Carmen had a follow-up GI appointment on Thursday and her G-tube looks good. We are now giving her 600 calories per day. She started out at 800 calories per day but gained 3.5 lbs. in two months so hopefully 600 will be the right amount for her. Carmen gets 12 hour night feeds and 3 hour nap feeds and then water flushes various times throughout the day. She has more time off the feeding pump now and pretty much is only fed while asleep. This gives us a little more freedom to move her around.

One of Dave’s former coworkers sent Zoobie Pets for the girls. Zoobies are the cutest pillow animals that unzip into a blanket. Lauren got a hippopotamus and Carmen got a giraffe. I can see why Zoobies are very popular! Thanks Mike!

A few weeks ago, Rachinee, a Cookie Lee consultant,(and mom of 5 and wife to Dave and MOPS coordinator and decorator of all things at the church and a very wonderful friend, etc!) held a fundraiser (“friend-raiser”) for Carmen. The total came in and Rachinee raised enough to pay for our trip to Tampa for the NTSAD annual family conference- $1500! What a wonderful blessing!

Friday, February 22, 2008

Happy 18th Birthday Uncle Micah! It is hard to believe that the little boy who came to visit us at LeTourneau and stayed in Dave’s dorm room is now EIGHTEEN! Hope you still aren’t eating Fruit Loops with Big Red soda!

Wednesday, February 20, 2008

Happy 19 Month Birthday Princess Carmen! We love you very much. May you feel loved and cherished this month.

Friday, February 15, 2008

Happy Valentine’s Day (a day late)! We went to a Valentine’s Banquet at our church last night. We kept Carmen with us and she stayed awake from 6:45pm-10:30pm. Carmen’s regular bedtime is around 7:30pm so this was quite amazing for Carmen! We had a yummy dinner (crab cakes) and listened to a wonderful violinist, Jaime Jorge. When we got home, I told Carmen’s nurse that I expected Carmen to sleep like a rock since she was so tired. Next morning, the nurse told Dave that Carmen stayed awake until 3:30am! I guess the Valentine’s Banquet was quite exciting for Carmen!

Carmen’s seizures are increasing. Today she had two separate episodes of repeated seizures in which her arms and legs flew up. Both times, she cried after the five minutes or so of seizures. She sees her neurologist next week. Seizures are part of this disease but I need an idea of what to expect and what can and cannot be controlled.

Carmen is almost 19 months old and I thought I would describe what Carmen is like at this point. First, Carmen is very cuddly. Holding her is like holding a 27 lb. beanie baby; she melts into you. She is immobile but she does move her arms and legs, very slow, tiny movements. If I strap her into a reclined chair, she sits there until I move her to another spot. For the most part, Carmen is very content. The month prior to her G-tube surgery, she did not make one sound except to cry when we inserted the NG tube into her nose. She has cried some in the past couple of weeks since her surgery, mostly from gas pains. Maybe once per week, she will smile. We don’t see much response from her but she knows when we are next to her. If we make noise, she will look up. Carmen has very few purposeful movements but I did see her trying to touch her tummy tube shortly after it was put in. When I sit and hold Carmen, she is perfectly still and looks so very content and peaceful.

This week, a very sweet little boy and his mom came for a visit. I am sad as the little boy has recently been diagnosed with GM1-Gangliosidosis. To his mom: if you are reading this, please know that we are praying for your son and your family and I am here for you.

Tomorrow, I’m going to a Women’s Breakfast at church. Childcare is provided so I decided to take Lauren so Dave and Carmen can have some Daddy-Daughter time. I wonder how many Andy Stanley DVDs Carmen will watch with Daddy?!

Thursday, February 07, 2008

Carmen had her surgery one week ago today and is doing fairly well. She does have fussy times during the day (totally uncharacteristic of her) so we continue giving her Tylenol/Motrin. It’s hard to see Carmen uncomfortable and we do our best to figure out what could be bothering her.

Lauren has been saying some cute stuff lately:

In preschool, Lauren is learning the 10 commandments and they are up to Honor Your Father and Mother.

Lauren: Mom, you are a wonderful cook.
Me: Thank you, Lauren!
Lauren: Mrs. Ellis said I can honor my mother by telling her she is a wonderful cook at dinnertime.

This comment is funny because Lauren is the most picky eater ever and I think she was having warmed up left-over Super Bowl pizza and grapes!

Lauren is all into playing “getting married” with her dolls. I officiate over weddings everyday! Couple of days ago I made a comment that got a very teenage reaction from Lauren.

Me: I think you should marry TJ when you grow up!
Lauren: (rolls eyes) Whatever.

Now, TJ is a wonderful friend and Lauren loves to play with him but he’s a year younger than Lauren. Maybe being the older woman won’t bother Lauren in 20 years! Ha!

Switching gears, some of you know that we have to move out of our current home in July when our landlords move back in. We moved into this townhouse in August because we really wanted to be near our church (1.75 miles away). Lauren goes to preschool at our church, Church of the Redeemer, and we plan for her to attend elementary there too. Lauren also goes to Awana and I am part of MOPS. We felt that being as close as possible to our support system was very, very important while caring for Carmen. Now we are faced with another move and have decisions to make. My mother-in-law and I found a beautiful home with a main floor bedroom and bathroom (just perfect for Carmen) near us. Our current townhouse has stairs all over the place and it is getting dangerous. I was carrying Carmen up the stairs recently and lost my balance. I caught myself with my knee. Carmen’s feeding tube was under my knee and she cried and cried and I felt AWFUL! So, our two huge goals are 1) to stay near our church and 2) to find a place that doesn’t involve carrying Carmen up and down stairs. Lots would have to happen for us to buy or rent such a home so we ask for prayers. Around here, most everything has stairs (lots of multi-level homes) so I was excited to find the house with the main floor bed and bath. We are asking God to make it very clear where we are to live. I sure hope that this move is the last one for a very long time. It would be nice to not have that stress right now.

Saturday, February 02, 2008

We are home! Carmen had her G-tube (feeding tube in her tummy) surgery on Thursday and did so well that we got to come home today. Carmen was in a lot of pain both Thursday and Friday and was given some extra morphine. The pain wasn’t subsiding and we finally figured out it was constipation. Once that was resolved, she was her normal content self!

Based on just a couple of days using the G-tube, I think it is much more convenient than the NG tube. And, I’ve only spilt her stomach contents all over once! Got to remember to clamp the tube before opening!

Thank you for all your prayers. This hospital stay really wasn’t bad and we had a very nice, quiet roommate (always a huge prayer). Huge thanks to the MOPS moms for bringing meals.

Dave’s parents are here for a few days and Lauren is having great fun playing “prince and princess” with them. Before Carmen’s surgery, I went to the Disney Store and found cloth Prince and Princess dolls on sale for $2.00 each. The Prince and Princess have gotten married many times this week!

Tuesday, January 29, 2008

We had a wonderful time at our Cookie Lee Jewelry friend-raiser benefit party for Carmen! Old friends and new friends stopped by and it was just great to see everyone. We are so very grateful for Rachinee and her hugely generous heart (you inspire me, Rachinee!) and all who are taking part in this journey with Carmen. I don’t know the specifics yet, but Rachinee had such a good turn-out and lots of sales. In my opinion, Cookie Lee jewelry is great- it’s really cute and reasonably priced (adding my advertisement for Rachinee!). Thanks to Azeb for the lovely orchid set. I will cherish wearing it! And, thanks to Karen for the princess crown for Carmen and the ballerina necklace for Lauren! And, thanks to Dave for the Valentine’s Day gift that I ordered for myself and that he hasn’t seen yet! Hee! Hee!

A wonderful friend came to the party and gave us a very generous gift. You know who you are and thank you so very much!

Yesterday, I drove to Bethesda to pick up Carmen’s ankle braces. However, the braces are not the right ones, so a rush order is being done for adjustable ones and Carmen should have them in a week or so. It was an unproductive visit but Monica (a Hospice volunteer who came along with us) and I had fun laughing about the ridiculous parking situation and the little old lady who took our handicap parking space because she was going the wrong way down a one way and got there first!

We got a delivery yesterday- a pulse oximeter and oxygen machine and tanks. Carmen’s breathing sounds so labored at times that her pediatrician felt we should have oxygen available.

This morning, Carmen and Lauren got a package in the mail from a wonderful family in Ohio! This family adopted a beautiful little girl from Guatemala. I followed their story and blog because Carmen and Mikayla are about the same age and we were in the adoption process at the same time. Their son, Alec, made Build-A-Bear stuffed animals for the girls. He made a white puppy with red hearts for Carmen and a bear with a pink/black polka dotted dress and pink bows for Lauren. Thank you so much to this wonderful family and especially to Alec who brought big smiles to Lauren! Carmen cannot see much so I love to have soft things for her and the puppy is just perfect!

Thanks to everyone who has signed our guestbook. We love reading the messages!

Sunday, January 27, 2008

Tomorrow Carmen gets her ankle braces. Her ankles are getting stiffer so hopefully the braces will help put her foot in a better position. We picked out some cute ones- pink with heart straps!

Also tomorrow, Rachinee, is hosting a Cookie Lee “friend-raiser” for Carmen. We will have it at our house from 2-7pm, open house style.

Last week Dave and I met with Carmen’s pediatrician to talk about our plan for Carmen’s life. Dr. Pedreira is a very wise man and we wanted his thoughts both from a medical perspective and a Christian perspective. I’ve really been struggling with what to do for Carmen- what will make her comfortable and what is just too much. I also worry about what her life will be like in the coming months and hopefully years. I want her with us for as long as possible but I don’t want her to suffer. Dr. Pedreira gave us some advice that literally lifted a burden off of me. He said to really focus on what will make her comfortable TODAY. I think I can live with all of our decisions if I know that every decision we make is based on making Carmen comfortable. I have been so worried that we will make a selfish decision and that can go both ways- keeping her alive or letting her go. So, in our quest to make Carmen comfortable, we may make decisions that prolong her life and we may make decisions that have the opposite effect, but we know our motivations and I can live with this path we are choosing.

Yesterday, we went to TJ’s birthday party and had a wonderful time! Carmen got one tiny bite of chocolate cake (like crumb size)! The party was at one of those fun kid play places and the owner gave me a free pass to bring the girls back another day. She asked me about Carmen and said she used to be a neonatal intensive care nurse. I know most people are hesitant to ask about Carmen but I really, really don’t mind one bit. I like to take the opportunity to share about Tay Sachs, AB Variant. Seven months ago, I had never heard of Tay Sachs or any of the similar diseases and now I could give a lecture on the subject- Ha! Ha! I think Dave had as much fun as the kids at the party. Well, at least with the pom-poms!

After the party, TJ’s family took us to lunch at Fuddrucker’s and that was a special treat for our family- thank you! This brought back really fun memories for Dave and me. Way back in college, we were mystery shoppers for Fuddrucker’s. We were poor college students and had plenty of time so we would get paid $20 to go eat at Fuddrucker’s and then fill out an insanely long survey on the food, restaurant cleanliness, customer service, etc.

Dave and I host a Bible study in our home (we just finished Andy Stanley’s Breakaway series) and I want to thank Claudia who keeps bringing AMAZING desserts!

Friday, January 25, 2008

Today was a restful day. I have one million things to do but decided to just enjoy the girls. So, I held Carmen while playing paper dolls with Lauren. Then Lauren and I did Pilates while Carmen napped and later gave each other manicures! Nothing quite like letting a 4 year old buff your fingernails and apply cuticle oil!

This morning Carmen’s Physical Therapist showed me how to position Carmen for chest PT. Carmen looked like an acrobat!

We have a fun weekend coming up. Lauren’s good friend, TJ, is turning 3 and we are all going to his birthday bash.

Carmen’s 18 month checkup was yesterday and she is now 27 lbs. and 32 ½” tall!

Tuesday, January 22, 2008

Sorry for the lack of updates lately! We have been busy, busy. My mom came for a 2 week visit and we had a wonderful time with “Texas Grandma.”

Carmen’s G-tube surgery is scheduled for January 31st and she will stay in the hospital as long as 4-5 days but we are hoping more like 3 days.

I was thinking today about how different Carmen’s life has become in six short weeks. Six weeks ago she was still eating by bottle and was taking no medication. Now, she is only fed by tube and is taking 1) Keppra two times per day for seizures, 2) Prevacid two times per day for reflux, 3) Reglan three times per day to help empty her stomach and reduce reflux, and 4) Pulmicort two times per day and Albuterol as needed for breathing. Carmen also gets occasional Milk of Magnesia when prune juice doesn’t work for constipation and Robitussin to help her cough. My guess is that the list of medications is going to get longer as this disease progresses. Once Carmen has the