For the past few weeks, Damien’s ot and I have been discussing enrolling him in a feeding clinic. When he turns three, she will no longer be able to work with him and he is going to need something to help him stay on top of his eating habits. She and I agree the best program for him would be an intensive feeding clinic. There are two that I have found so far. One in Philly and one at Hershey. WhAt they are are four week programs that subject him to observation and structure at meal times. They follow a strict set of rules to train him how to eat. I would receive training on how to approach mealtimes with him. I know this is a good idea but what do I do with gabe for a month? I don’t want to keep him from home for a month but I don’t want to be away from him that long either. The same goes for Damien. I don’t want to take him up and leave him there and we can’t travel back and forth. There is a lot I will have to work out and it will work out in the end, just thinking about it is kind of overwhelming.
Damien and gabe had a wonderful holiday. They were both exhausted by the time it was ready to come home. Poor Damien slept from seven last night until about seven this morning. He seems to be out of sorts today. I’m hoping its from all the excitement from yesterday and that he isn’t getting sick. He’s asleep again so we will see how he feels when he wakes up. Poor little guy.
Hi! My name is Damien. I am two years old and have 65 roses. That is what we call Cystic Fibrosis. I have a little brother. His name is Gabe. He is not sick.
Gabe, my little brother, and me make mommy laugh.
Mommy gets sad and cries cause I don’t feel like eating and don’t gain weight. She tells grandmom she worries about what can happen. So she got me a feeding tube. It helps a little. But mommy said she wouldn’t change a thing.
Mommy, Gabey, and me live with Grandmom. Everyone loves me and Gabey. Grandmom hugs me and Gabey and says “We were kissed by God.” Must be true cause sometimes I see angels. Mommy didn’t not know I knew what an angel was. Grandmom doesn’t say anything, but I heard her say that worries her. Mommy and Grandmom worry a lot.
\We have lots of fun. I like to watch movies. I like Cars, Toy Story, and Chuck. i like to cuddle with mommy and I like to take walks. Mommy doesn’t take me out when it is real hot or too cold. In the morning, Mommy gives me my breathing treatment because I cough a lot. I get enzymes before I eat and before my snack. I can’t digest food like normal kids. Whatever that means. Mommy and Grandmom say I am good about taking my medicine.
Grandmom takes over my treatments at night. She says it’s to give mommy a break. Sometimes I cry cause I want Mommy but Grandmom tells me to “Hush, Mommy needs a break.” Mommy really doesn’t get a break unless Jenni is here. Caushe when Grandmom gives me the breathing treatment, Mommy is downstairs taking care of Gabey.
I like my doctors, but I don’t like when they put that stick in my throat. Sometimes I cry. The puppy room is my favorite. I sleep on the way to Hershey, sometimes Mommy does too. Grandmom complains but only jokingly, cause she gets tired too and no one keeps her awake. Grandmom doesn’t get lost anymore coming out of the hospital.
Mommy said one day she’ll take me and Gabey up to Hershey to ride the rides. ooooooo rides. Gabey and me would like that.
I am only two but I do have a wish. I am not sure what a wish is, but mommy and grandmom say that I do have one. So my wish is for a cure for 65 Roses. Grandmom and mommy’s wish is I grow to see a cure.
Grandmom says it can happen, because I am a fighter and loved. And so my journey continues.
Today is Christmas. It is the first year Damien is really able to understand how presents work. He and Gabe enjoyed the pretty wrapping paper on all the presents until they found there were toys underneath the paper. Then they forgot about all the presents under the tree and wanted the ones that were already open. It was so much fun watching them dig in and discover what Santa had left behind. I feel so very blessed to be able to watch them as they grow and discover. They are truly amazing.
With the help of their grandmother, they gave me a special gift. It’s a little book of poetry and stories of their lives as they see it so far. It is very touching and made me cry. To think of these words as their’s is just so special and sweet. I couldn’t imagine my live without them.
4 oz. Cinnamon (approx. 1 cup) 1 tablespoon cloves
1 tablespoon nutmeg ¾ cup applesauce (unsweetened)
2 tablespoons white glue 1 drinking straw
In medium bowl, combine cinnamon, cloves and nutmeg. Add applesauce and glue; stir to combine. Work mixture with hands 2 to 3 minutes or until dough is smooth and ingredients are thoroughly mixed. Divide dough into 4 portions. Wrap air tight in saran wrap and let rest over night in the fridge. When ready, sprinkle small amount of cinnamon on your work surface much like you would if you were rolling out dough. Cover with parchment to save your rolling pin. Roll out each portion to ¼ inch thickness. Cut dough with 2 inch cookie cutters of desired shapes. Using drinking straw or toothpick, make small hole in top of each ornament. Place cutouts on wire racks and allow to dry at room temperature for several days, turning ornaments 1-2 times daily. DO NOT EAT!
If you don’t mind your ornaments curling a little bit, you can also dry them in the oven. Preheat to 200 and bake for 2 hours turning after an hour. Also if your dough becomes too hard to work with, just stick it back in the fridge for a few more hours.
Occasionally we have night, like the night before thanksgiving, that make me question my sanity. I am sure every parent has those nights where they end up going on three hours of sleep the next day due to being up half the night with a sick little lovie or because of nightmares or whatever, but not every parent knows the wonderful joys of having to clean up peptamine from tubing that has pulled free. Not every parent has to deal with the sickeningly sweet smell of feeding tube fluid all over their child and their child’s bed. Let me tell you… it is none too pleasant. The resulting panic of a child brought up from sleep by the cold wet stickiness is not fun to deal with either. At those moments, the only thing you can do is draw a quick bath, get the mess cleaned up then settle in for a good long snuggle to calm down your hysterical child.
As hard as some days and nights are, I look back on my life and see just how incomplete I was before my boys came along. It’s very hard being a parent, but being a caretaker of a sick child makes being a parent even harder. I don’t begrudge a moment of it, though. I wouldn’t miss out on all the giggles, all the silly moments, all the new words and all the hugs. When the rough nights come, just remember they lead to new and better days. Just hang in there.
Damien had a better day today. He had a meatball and a half for lunch, grapes at snack time and cheerios and yogurt for dinner. He also decided he wanted some of the Mc Donalds mom bought home for dinner. I know he shouldn’t really have it. It’s not healthy for him, but once a week isn’t going to hurt him. I am feeling pretty tired right now. i think i will post more later.