A Letter to My Daughter's Illness

Dear OTC,

You've only been in my life for a year and that year has been downright the worst year of my life. I never knew what it was like to truly fail or feel completely helpless before in my life. Up to this point I’ve been good at everything I have ever tried, maybe not great but at least I felt in control. You have tested my patience, strained my other relationships, and caused me to doubt myself. You have given me some of the worst days of my life so far. You have made me feel alienated from everyone and everything. You cause my daughter to struggle sometimes daily and all I can do is stand by and watch and try to comfort her.

Jasmine and her "friend" Olaf 

You came into my life at a bad time. We had just had our second child and you threatened to take my Jasmine. I didn’t know I could ever feel so divided like I had to choose which child to hold more tightly. You scared us into realizing just how serious her condition was. I did not know what it was like to hold my baby and fear for her life until I met you. You have shown me how fragile life can really be.

But this isn’t a sad story. You gave me answers (thank you) and brought me great pain. I live my life knowing everything happens for a reason and I know there is a reason you and I were introduced. As I have gotten to know you better I realize that you must be preparing me for something greater. If I can handle this then I can handle anything. Everyday still feels like a roller coaster but we are learning together. Above all, you have taught me how to keep a bright young girl healthy and how to see her truly thrive. Every bad day she has gives me the ability to thank God that I know what good days look like.

I am looking forward to a bright future.

For better or for worse you are now a part of our family.. now and forever…

New Years Resolution: More Structure for Jasmine Marie

As you may have read in my last post we were visiting family for the holidays but we have returned home back to “normal life” with all of the same issues we had before we left. Some of these issues are normal for a two year old but most aren’t. If you don’t already know Jasmine has a Urea Cycle Disorder called OTC. Basically she can not process protein the same way everyone else can.

Jasmine celebrating the new year

I’ve been told that trouble with sleeping can be related to her condition. If her levels are high she gets sleepy and that can be dangerous because she could slip into a coma. We have been experiencing the opposite effect ever since her diagnosis and introduction of medications.

Jasmine was diagnosed several months ago now and since that time we have been puzzled by her weird sleeping habits. Sometimes we put her to sleep early only to be frustrated when she wakes in the middle of the night and cannot get back to sleep. So we started putting her to bed a little later. Some nights she wakes and some night she doesn’t. So far we cannot figure out what the cause is.

Getting her to sleep is also an issue so we have started doing a nighttime massage and singing to calm down. This has so far been effective. Right now we also have little sister who is still nursing so nighttime is very hard and mommas going CRAZY! Little sister refuses to drink from a bottle right now so that will also take some work!

Our new plan is to focus on meal times and g-tube feedings at specific times during the day. This is important because we have “eating issues” where jasmine refuses absolutely everything to eat and because of her condition she then needs a feeding by tube to supplement her nutrition.  We are looking into food and eating therapy as well as trying to play with our food to become more comfortable with eating.

Jasmine eating... or making a mess....

I have also asked her to get her sister things to eat and help me feed her little sister as we talk about food. I’m really hoping that even more structure will help us work through some of these things even though we go by a pretty strict feeding schedule already. 

Our Family and Some Holiday Confusion

If you have a kid then you know it’s hard to be a parent, it you have two kids, then you know its much harder than having just one. If you have more than two kids… God bless you cause I’m struggling with two!

Around the holidays and family parties you know that your kids are running around and you think you’re able to relax and let your family help. For some reason people want to just shove things into your child’s mouth. You want to swipe cookies?…. Awe that’s cute… You want candy? Sure, Don’t tell mom!

Here's some fun facts, consider: What did you feed your kids for the holidays? Jasmine can only have 2g of protein per meal. 

Mashed Potatoes - 4g Protein (1 Cup) 

Ham- 4.6g Protein (1 slice)

Sweet potato - 2.1g protein (1 cup)

Cookies?

Peanut Butter- 8g protein (in 2 tbsp)

Chocolate - 1.4g protein (1oz)

We have been visiting my hometown for the holidays and spending time with my family. This means there are a lot of questions about Jasmines “Condition”. You can explain and explain but there are things that parents with normal children just cant understand.

So why do I have family trying to talk her into eating cheese and crackers before dinner?

Cheese slice - 5g of protein (1 regular slice)

Our family is ALWAYS trying to HELP. And in their attempt to help they think that maybe her actions should just be punished away. She’s whining to much today and lashing out, so she needs to be punished. She puts everything in her mouth… she’s two. She isn’t sleeping like normal children, something must be wrong. Yes, she has a MEDICAL CONDITION. She is physically attached to a feeding pump most nights so its hard to let her just cry it out. Also, I get defensive because I, like every other (normal) parent in the world is trying my best to do what I need for my children.

Also no one quite understands her eating issues. Right now she is scared. For months every time she ate she would get sick. We are slowly trying to teach her that its OK and that as long as she eats what she is supposed to that she will not get sick. But how do you tell a two year old and make them understand? News flash…YOU DON’T. Thats why she has a FEEDING TUBE!!!

The old saying “they will eat when they are hungry” just isn’t the case with Jasmine.

I have had to come to terms with the fact that I can’t make her eat. This isn’t something that I can force.

Jasmine watching her "current favorite" movie Monsters Inc

Dealing with family for the holidays can be tough, and if you have kids, stopping your family from feeding them random crap can be hard. If your child has food allergies or sensitivities you need to pay very close attention. No resting during the holidays for you!