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.
Lana, Dave, Lauren, and Carmen~
I hope that the diarrhea gets better for Carmen and that the seizures let up. Isaiah isn’t into the “big seizure part” of the disease yet, but I dread it. It must be so hard to manage. I am praying for you all always and I will definitely add Avery and her family to my list. Take care and God bless!
Mary Cairns
Glasses…. How beautiful and sparkly! My daughter, who is now 36, had and still has an eye that rolls in. I took her to the eye dr at age 3 and she has had glasses every since. By second grade had to go to bifocals…. after I panicked and took her to another dr for 2nd opinion. Both docs were right on…. She has 20/20 vision in both eyes with glasses. I had told her that I would get her contacts when she graduated. But, that is not possible and it would have been silly anyway…. who is she without glasses, ya know? My daughter is beautiful and we always always always selected glasses that would display her radiant eyes for all to see. Now she’s a 7th grade math teacher and plays the role well. They think she’s cool when they get to know her and she takes her glasses off for them. “Hey, Way Cool!” I hope you see (no pun intended) the wonderfulness in glasses for beautiful girls. My daughter did and still does. Hallelujah, God, for our sight….. Love and Blessings In Christ, Betty.
I have two girls in glasses. My youngest starting wearing them at 4. My advice is get “good” frames. We have had many, many sets of lenses because our insurance company provided “crappy” frames. We gave up and paid for good ones.
Your girls are gorgeous. I’m sorry about what Carmen is going through. Your family is in my thoughts and prayers.
Our son is from Guatemala.
Best wishes,
Kara
http://www.hanksadoption.blogspot.com
Thank you so much for the updates on both of your beautiful children. I have been following your family’s story for quite some time now. Your strenght amazes me. I love the sweet picture of her that Lauren took.
Always in our Prayers
Candy, Kya Blu, and Jagger Jett
Hi Lana,
I hope Carmen’s seizures lessen. Glasses will only enhance Lauren’s beauty! Hang in there!
Hugs and prayers,
Kim
HI, My Grandaughter Deidre went into glasses at 18 months. For a while it was a circus keeping them on. We all spent most of our time with her pulling them off and us putting them back. She soon got used to them. She also has seizures and this spring underwent surgery because the Keppra, Phenobarb, Dilantin, and several others would not keep her in control. She has the absence ones, tonic/clonic, falling down, staring, and just about every other kind there is. Ask New York Grandma about her. She knows her very well. It is too long to put in here. Again prayers are said daily for all of you.
My little guy is 3.5 and got glasses right after his first birthday. He is a very active guy and we thought there was no way he would wear them. We were wrong and very shocked! The first time he put them on he was yelling, “I can see the trees, I can see the cars.” He made me and all of the ladies in the optometrist office cry! I am so happy we caught it so early in life, the doctor said he hasn’t seen anything clear in his life until now, he litterally couldn’t see it unless it was right in his face, poor guy! One word of advice would be to get 2 pairs of glasses. We bought one pair from the optometrist and then when to Shopko(department store) and bought another pair. We had to do this after we were in getting the one pair adjusted 2 times a week, it got to be too much! Also, expect them to break, my son’s first pair broke in 2 hours after he got them, those darn walls just jump out at you!! we’ve gone through a few more pairs in the last 6 months, but it’s great seeing them explore the world!
Good luck to Lauren, I am sure she will look so cute! and I am praying for sweet Carmen.
Thanks for all the glasses advice! Lauren, Carmen, and I went to the optometrist yesterday and ordered a pair of purple princess glasses for Lauren. She was so proud of herself! She giggled everytime she looked in the mirror. I purchased the extra warranty to cover ALL scratches and breaks so hopefully these will last a while. Our insurance covered this pair but I am looking around for a less expensive place to buy a second pair.
Thanks for the update, Lana.
I will pray for sweet Avery and certainly for Carmen and Lauren. Please give both big ((( HUGS ))) for me!
Lauren, I am sure you will look beautiful – and very distinguished – in your glasses. I have worn them since the age of (about) 5.
I love you all.
Becky
P. S.: If you have the opportunity, please visit my friend Heather’s CB site. I just set it up on Sunday for her. http://www.caringbridge.org/visit/heatherjones
Thank you…
Hi Lana,
Shannan Brown here……………if you remember we attended Believer’s Bible Church together in Lufkin. So fun wasn’t it? I ran into your mom and Micah yesterday and she told me about this website. I’m truly touched by it andwill pray for you and your family daily.
-Shannan Brown Griffith