Update

I havn't been keeping up with this as much as I wanted. I am going to try to set aside one night a week to write.


I think I will just give an update on things going on with us.

Cameron is slowly getting used to his tube. If I ask him to help me with it he seems to respond better. He gets his new M-Key button the first week of January. This one will give him more freedom and will get rid of the need for him to be taped all day. Its making it hard since he is allergic/sensitive to the tape/adhesive. He has a LOT of granulation tissue that needs to be burned off. They want to wait until he gets the new button to reduce the risk of burning the good skin. We also recently discovered that his stomach isn't emptying properly. So all along he may have not been hungry all the time, but rather always full. We've made it up to 80ml/hr on his pump. He's down to 1290ml a day. Hopefully we can get up to bolus feedings once we figure his medication out for emptying his stomach. He is on an antibiotic for it that expires every 10 days. I didn't realize that when my husband picked it up they gave him one bottle of 100ml instead of 3 bottles. So this bottle expired and it says I can't get anymore until the 17th The pharmacy i went to is the same chain but a different location. She called and got it all figured out but had to order it. Guess what.... Its on back order!!! REALLY????? She called around for me though and found that out of the 4 she called one in Avon had it. yikes. On a lighter note, he has gained about 2.5 lbs. He looks so good!! He's starting to not feel bony!!

Sadie is standing on her own. She is thinking about walking. She has 2 teeth on bottom. She is also getting 2 teeth on the top but the two next to her front teeth. She will soon look like a vampire. lol She will be cute anyway. I think her hair has finally decided it will be a dark strawberry blond. We have been having a problem with Sadie having horribly acidic watery poos lately. Our amazing pediatrician had me ask Cam's GI about it. She said she wants to test her for malabsortion. Here we go. She is going to do it even though she isn't a patient. That's what happens when you see the best GI in town. Shout out Pediatric Gastroenterology Assoc. of Indiana (payton manning childrens hospital)!!!!!!!


Matt and I are doing well. I'm becoming more frustrated that no one can help me with my weight. I gained a lot with the pregnancies and am having trouble getting rid of it. I was big before and still no one could figure out why. I've been tested for everything and have been told I'm Healthier than many people they have seen. My doc said i am not getting enough calories and my body is then storing everything. yay rah. so now he tells me i need to eat to loose. not going so well. when you have 2 under 2 you often forget to eat. not to mention that i can't eat in front of Cameron for fear of hurting his feelings.

Christmas is almost here and Matt and i are uber excited to go shopping next Saturday. It's Sadie's first Christmas and the first that cam might have a clue as to what to do. It will be here before we know it!!!

Cheated

Today was a really hard day. I was diagnosed with narcolepsy about a month ago. I've had a problem with it for about two years now. I don't know why it took so long to become a problem. It may have been that for many years i worked nights and slept days "masking" the symptoms. My neurologist started me on medication to help me stay awake during the day. It worked great for a while. I felt "normal". Then it started to fade. I have good days and I have bad days. It seems worse now though. I think its due to knowing what normal feels like, so that now I'm more aware of the fatigue. Some days all i can do is count down the hours to nap time so that i can sleep. Its frustrating. I'm so tired during the day and then when its time to go to sleep at night i can't. Then i want to sleep in and ask Matt to get up with the kids so i can sleep as much as possible.

I feel like I'm letting my family down. I can't get down on the floor to play with my kids because I feel like I'm going to fall asleep. I get short with my son because I'm so tired then feel like the worst mom. Matt doesn't understand what its like yet. I know he gets frustrated when i make him get up early nearly every day. I try to give him a day on the weekend where i get up with the kids and let him sleep. He doesn't understand how hard that is for me. When he comes home from work all he wants to do is relax. I understand that. I hate asking him to take over, but most days i am BEYOND exhausted by the time he gets home. After we get the kids in bed he always tells me to go to bed early. Its not that easy. I lay there for hours before i finally fall asleep.

How do you make someone who doesn't have this illness understand the toll it takes?? I love my husband. He is a great partner and father. I don't know if I'm asking too much or if it will just take time for him to fully grasp it. I've been reading some forums about narcolepsy and there seems to be a high rate of divorce among couples with a narcoleptic partner. I don't want to end up that way.

Bad day... bad, bad day.

Will it Never End?

Yesterday I took my daughter in for her 6 month checkup. all went well and she is finally back on her growth chart for her weight. YAY!!! I have the most AMAZING pediatrician ever. She asked how my son was doing. I began to tell her his measurements that his nutritionist had taken the previous day. She, once again, was worried about him.

A little back story:
At 10 months my son was diagnosed with dysphagia, eosinophilic esophagitis, severe reflux, and NUMEROUS food allergies. He was put on an elemental formula to help him gain weight and grow.


So she asks what hes eating. Hes been off of the formula for almost 2 months and is on soymilk and regular foods. I have been adding as many calories as I can to his milk. He gets a decent amount of calories and is still not growing. He hasn't grown in months. She then tells me she wants to test his thyroid and hormone levels. Upon the results of that he may need a growth hormone. Ok. easy enough. Then she kinda drops a bomb on me.

"I want to run a sweat test."
Me, "What does that test for?"
Doc, "Cystic Fibrosis."
Me, "ok."

Now, I'd heard "cystic fibrosis" before. It wasn't until I got home and looked it up that I remembered what it was. I immediately began to cry. When I got to the line that read "average life expectancy, 35 years", I lost it. I know she is just testing him to be sure. A lot of his symptoms would fit that diagnosis. I feel confident that he doesn't have it, but in the back of my mind I know there is still a small chance that could be the case. All I could think was that my poor little boy would never be able to have a normal life.

My husband keeps telling me not to worry and just wait for the test. "He probably doesn't have it" I wish I were as cool and confident as he is. As a mom, all I can think about are the "possibles". It's POSSIBLE he may have it... It's POSSIBLE he doesn't. I just wish we could get a definitive answer to his problems. all doctors involved agree that they havn't seen a case like my son before. He is unique.

For the next week or so I know that though I may try to hold it together, all I will do is worry. I pray the days go by fast and we can be at peace with whatever the outcome may be.

Introductions

My name is Andrea. Saturday I will be 23. I'm married and have a 14 month old son and am 8 months pregnant with our daughter. At the moment I'm a stay at home mom. This was definitely needed this year due to my sons health.

I'm starting this blog I guess because I have a lot going on in my brain and can't really get it out. I'm hoping that by writing down my thoughts, fears, joys, and pains that I may be able to breathe a little easier even if no one knows about it.