Every few weeks, Carmen starts having new seizures. In the past week, she has started having passing out seizures. She will be awake and her eyes will be open and then instantly her eyes will roll back and she will be out for a while. She has been doing this frequently during the day. Carmen has all kinds of seizures: myoclonic where her leg or arm will jerk for a while, tonic-clonic (grand mal) with stiffening and then jerking (Carmen has had clusters of tonic-clonic seizures for up to 35 minutes), laughing seizures, facial grimacing, and now passing out. Carmen is maxed out on Keppra and Phenobarbital, two seizure meds and takes Ativan every 6 hours. The seizures are a huge part of this disease but Carmen’s respiratory status is more difficult for us to manage.
I am asking for prayers for Avery, a sweet little girl born at 33 weeks. She had a very rough start with pneumonia and will most likely be in the NICU a couple more weeks. She is doing better now but please pray that Avery will get to go home soon! Avery’s parents lost a son, Conner, to Tay Sachs. http://www.connersway.com. Avery has a wonderful big brother named Brenden who I bet is super excited about his new sister! Congratulations to Desiree and Carl and we will be praying for Avery!
My first thought when I heard about Avery was, “No, no, no, this isn’t fair!” My guess is that most of us with terminally ill kids have this dialogue going on in our heads that nothing more can happen to us. Like we are weathering/have weathered this storm but from now on it has to be smooth sailing. Life doesn’t seem to work that way and we are often asked to let go of everything. Hopes, dreams, expectations, health, jobs, etc. I find myself hanging on for dear life and I know that is not a peaceful place to be.
Guess who is getting glasses??? Lauren! I took Lauren to the pediatric ophthalmologist today because her eyes seem to drift inward. New York Grandma has commented on this several times so I decided to take her to the eye doctor. I was mostly expecting the doctor to say that everything is fine and for me to feel a little silly bringing her in. Well, she has a significant astigmatism in her left eye and sees 20/80 in that eye and doesn’t have much depth perception and isn’t using that eye. So, she will be getting glasses. Definitely something girly or sparkly or pink or purple. Maybe even princess! If you have a child with glasses, I would appreciate any advice on the world of glasses and kids! I got glasses in 2nd grade and contacts in 3rd but I really don’t remember much about that time.
Update on Carmen: We would appreciate prayers that the doctors quickly figure out what is causing the chronic diarrhea. After 6 months of chronic constipation, it is so strange to change 4-5 diarrhea diapers per day! Sorry if too much information! Dave dropped off Carmen’s stool sample today so hopefully the doctors will have some information for us in a couple of days. Our initial thought was that the constant antibiotics had wiped Carmen’s system out. But, I’ve been giving her 100 billion potency active pro-biotic cultures and nothing is helping. Her doctor suggested that she may have developed a secondary infection from antibiotic use so he is testing to see if she has some type of digestive infection. Other than lots of poop, Carmen is comfortable and doing OK!
Now to the shameless brag….(The shameless brag isn’t about poop!)
Last year Lauren’s preschool teacher commented that God must have known I would need an easy child with all that I have to handle with Carmen’s disease. Lauren is certainly an easy child. She can entertain herself for very long periods of time. Largely this ability comes from necessity. I am often very busy with Carmen and I feel badly that Lauren plays alone so often. But, I also think she has the personality and imagination to entertain herself.
Yesterday Lauren put together this 100 piece puzzle all by herself. She was very proud of herself! I still had to bribe her with chocolate to take a picture with the puzzle! Ha!
Lauren took this picture of Carmen. I did not crop this at all. I think she did a great job with composition! After taking one picture, Lauren said, “Hmmm…not in focus and not the right lighting.” After this one, she said, “This looks pretty good!” Ha, she is her mother’s daughter! Aren’t Carmen’s eyelashes insane?! I couldn’t get mine that long with a whole tube of mascara!
Thanks for indulging my shameless bragging!!!
The MOPS moms have continued to bless us with meals and we want to say thank you, thank you, thank you! Everything has been delicious! This has been such a huge help!
Consider yourself warned! Some of you are not going to like this post.
The doctors and nurses surrounding us don’t seem to think that Carmen has much life left ahead of her. As Lana has written previously, Carmen’s body is simply wearing out. To be sure, Lana and I are absolutely confident that God can heal Carmen. Yet we are also confident that He is God whether He chooses to heal her or not. So while we continue to ask God for a miracle, we are also doing everything we can to prepare for Carmen’s funeral so that if the time comes we will have a few less things to worry about.
About two months ago, we visited a funeral home and talked through several options. A couple of weeks ago, we visited a cemetery and did likewise. This past weekend, Lana prepared the funeral program while I wrote the first draft of Carmen’s eulogy. In many ways, it was one of the most difficult things I’ve ever done. Yet it was also one of the easiest things because the imprint of her life on ours has been so incredibly vivid. I am not going to share it with you now. Lord willing, I’ll never share it with you if God chooses to heal Carmen.
But it really got me thinking about my own eulogy. What will people say about me when I’m gone? What impact, if any, will I have made? What legacy will I leave behind? These questions might seem morbid but I think they are important questions.
So here’s your chance…if there are any brave souls among you. If you could write your own eulogy, what would it say?
Carmen has a fever again. She just finished another round of antibiotics but only lasted a couple of days before the fever came back. Carmen is not doing too well on antibiotics anymore. She has chronic oral thrush and diarrhea. No fun at all. She is requiring more and more suctioning to keep her from choking on saliva. Today was OK but yesterday I suctioned her out over and over. Well, the good news is that Ativan every 6 hours is still working well. She sleeps soundly at night and is awake during the day but seems comfortable and relaxed. I am amazed that she gets 3mgs of Ativan during the day and still stays wide awake!
Happy 25th month birthday, sweet Carmen!!!!!!!!!!!!!!!!!!!!!!!!!!
We have decided to start a new tradition- Family Night. I believe in giving credit where credit is due so I need to say that I got the Family Night idea from Heather. http://whittakerwoman.typepad.com/ Tonight we decided to do Beach Night. We didn’t make it to the beach this year so we brought the beach to our house. Lauren wore her swimsuit and we put beach towels on the kitchen floor. The MOPS moms have been blessing us with meals (THANK YOU!) so we had Tammy’s pasta and cucumber salad. I made a yummy chocolate pudding and vanilla wafer concoction and layered it in Lauren’s sand bucket and topped it with crushed vanilla wafers for sand. We scooped it out with her sand scooper. It was simple and easy and Lauren was beyond excited. Most of you are WAY more creative than I am so make a date and do Family Night!
A couple of pictures from tonight….
Lauren and I went “camping” last night on the living room floor. Let’s just say that I’m going to be drinking lots of coffee today and will also need an Ibuprofen or three. But it was well worth it to hear, “Daddy, I just loved going camping with you last night!”
Lana and Lauren did a great job building this but I’m not sure if it’s a tent or an igloo. What do you think?
Comments (10) 
