Sunday, September 28, 2014

Defeating Constipation: Tips and Tricks on how to get things moving

I personally do not have experience in having a child that is blocked up, but I wanted to compile all the advice from the pros in one post in hopes to help someone else. Comment with anymore you'd like to add and I'll add them to the list. From what I've read you can attack it from both ends, anything you intake through your mouth will be fighting the top of the blockage, while suppositories will be fighting the bottom of the blockage. Always ask your doctor, these are just suggestions, but seek a professional opinion if it's consistent, there could be more going on to cause it.


  1. Prune Juice - 2 Glasses usually gets things moving
  2. Clockwise Belly Rubs
  3. Lots of Fruit
  4. Increase Liquids
  5. Enulose syrup
  6. Magnesium supplements can work wonders for the bowels--There'a brand specifically for 
  7. children called "Kid's Calm"
  8. A big spoon of honey in milk
  9. Flax seed is good supplement for GI tracts
  10. Pedialax
  11. Apple Juice
  12. Aloe Vera Juice
  13. Coconut Oil
  14. Suppository 

Friday, January 10, 2014

Learning, Learning, Learning!

We are starting a form of early preschool this year, so to start it off I thought it would be good to see where we are at. Over the course of a week I didn't interfere with her play but paid attention to words she said, and stuff she recognized as she was playing. I don't want to start a formal sit down and learn school but more learning focused at least. Most of these are What's that? or Where's the? Or stuff that she will just say while playing, point out during the day kind of thing. Also I'm not going to be adding other categories to the word list, but if it's listed she can say it as well.


Animals

Butterfly
Ladybug
Penguin
Bumblebee
Puppy (woof woof)
Kitty / Cat (Meow)
Monkey (ooh ooh oooh)
Owl
Bird (peep peep)
Hippopotomus
Bunny

Numbers
1
2
3 (in order actually counting stuff)

Colors

Letters
O

Word List
Eat
Help
Please
Thank You
Water
Milk
Juice
Ball
Blanket
IPad
Phone
All Done
Bone
Strawberry
Blueberry
Mac and Cheese
Oatmeal
Coffee
Tea
Beer
Ham
Turkey
Green Bean Casserole
Squash

Body Parts
Head
Mouth
Eye
Hair
Ear
Nose
Hand
Elbow
Arm
Shoulder
Leg
Knee
Foot
Toes
Fingers
Butt
Chest
Boobs
Back
Penis
Vagina (gina)
Belly
Belly Button
Neck

People in Photographs
Mommy
Daddy
Oma
Opa
Mina (Moo)
Aunt Debbie
Uncle Trevor
Uncle Justin

Signs
All Done
Eat
More
Help

Thursday, December 5, 2013

Clinic 12-5-13

Weight: 24.4 pounds
Height: 31 inches

Once again we had a great clinic visit. I am so thankful for all of these visits that are good news as I know that as time goes on they will be getting worse not better. We brought her vest with us to make sure we were doing it right, and of course there were tons of tips and tricks that we discovered. So now we will be doing the vest for 20 minutes twice a day, and ideally she should have an hour of air way clearance stuff a day, the other 20 minutes would be every day playing.

We switched up her albuterol, the nebulizer really had an bad effect on her mood and over all sleep I felt. So we switched to using an inhaler, she is still getting the hang of it because this form take more breathing control that she hasn't mastered yet. There really isn't a substatute for albuterol so all the different options we have are just different ways of delivering the same medicine which from what I've read on the cf boards I'm on is really the problem.

Her lungs sounded clear and he wasn't  concerned about her small cough that she had developed this week, thank goodness!

Finally, they discontinued her vitamins (Source CF) so we started giving her a natural vitamin (Rainbow Light), and we weren't sure if it was enough. The dietitian told us to give her two a day and when we do her vitamin blood draw check next clinic we'll see where she is at and how these do. She LOVES them, always asks for it lol so I hope we'll be able to stay on them.

We go back at the beginning of March. :)

Monday, October 21, 2013

Dealing with the Diagnosis of Cystic Fibrosis




The most common responses I hear when I tell someone that Meesha has a terminal disease is "I'm sorry" and "how do you handle all of that and stay so calm" 

Many new parents I've talked to who have just received the diagnoses on they baby are feeling a whirl wind of emotions and usually ask if they will be this mad/sad/hurt by it forever. If they will feel this lost and helpless forever, and when coming to terms with it all happens. 

I wanted to talk about how we deal with it and how we came to terms with it all to be as calm and "normal" with it as we are now. In hopes that it will help another parent facing the possibility of their child dying before them. 

Life is full of sink or swim moments. We experience them and handle them differently but it's human nature to figure out a way to swim! 

To me Meesha having Cystic Fibrosis is just a part of her. Some times it requires more thought and caution but for the most part she is a normal almost 2 year old. I like to think of it as maintaining healthly teeth. In an average day she has to brush her teeth so she doesn't get cavities, she doesn't get rewarded for brushing her teeth or praises because it just a part of life. It's something she will do for the rest of her life as a part of her body maintaince. This is the same with maintaining lung health, she will have to do vest and breathing treatments every day for the rest of her life. She will receive no praise or reward for this because it's just a part of her life. I have been told that they should receive praise for doing these things but children are just tiny adults. You shouldn't go through life expecting rewards and praises, you should do things for self rewards. You complete your treatments, you help keep your body healthly. Obviously there are people who do all their treatments and still get sick and have decreased health, but that doesn't mean that anyone should just throw their hands up and not do it. You just fight harder and find new ways to fight. With CF what works for one doesn't always work for the next as the disease varies so much case to case.

I know, it's your child ,it's my child's life we are talking about here. No one ever died from not brushing their teeth but I figure the more normal I make this for her now the more just apart of her life it will be as she gets old. This has already been proven to me multiple times with throat swabs, doctor visits and her treatments. When we were doing the reward/praise system as directed by her doctor it was harder to get her to do anything without a fight and she always expected to get something out of it. But now she just does it because it's what she has to do. 

I am a firm believer in life works itself out how ever it's supposed to in the end. And if I was only meant to have Meesha in my life for a short period of time then that's what it is. Of course I will be heartbroken but dwelling over the what ifs now will only take away from the time I do have with her. You can't live life stressed. Stressed about money, what might happen, what has happened or drama. It doesn't change anything to be stressed/worried/upset about these things it just takes up precious time and thought space. 

And I know most will think well that's easier said than done. Which is true, but you are fully capable of rising to the occasion. So start today! Change your outlook and live every day like its a present and your last. Because anyone can die from anything at any time, dying from CF is the least of my worries as a parent of a beautiful little CFer. 

How did your family come to terms with CF or any other disease/set back? I'd love to hear your story. 


Wednesday, September 18, 2013

Medical Binder for Cystic Fibrosis Patients



From the moment we found Meesha had Cystic Fibrosis I knew I was going to need a go to spot to put everything she needs to keep track of all the paperwork and doctor visits! Now that we are on a 3 month cycle I am even more glad that I started this all those months ago because it has been so handy. And I am always adding more forms and ideas to help keep us organized. I wanted to share it with all over you in hopes that it would help organized your life! I know dealing with CF is already a headache if your stuff is organized that is one less thing to worry about! I am also providing the links so you can download the PDFs, in the near future I will make them fill out forms! You're very welcome! I love giving free stuff that I know will help someone else out! If you ever want anything changed, add, have an idea for a new form just let me know!

In my binder I have two sections, the first section is Go To Forms, these are forms that I need to look at often or need to get a quick reference phone number or something that I'd prefer not to be digging through a binder to find. I keep them all in the page protector forms so they are easily accessable.

  1. Medical Binder For - Title Page
  2. Important Contacts - Doctors / Nurses / Nutritionist / Any important numbers
  3. Pharmacy Information - Pharmacy contact info, prescription info
  4. Medicine Schedule
  5. Growth Chart
  6. Illness Tracker
  7. Table of Contents (for section 2)
My second section is the dividers and they are as followed, I use pocket dividers so I can store stuff that I don't either want holes in or is too small for holes.

  1. Birth Paperwork
  2. Insurance Paperwork
  3. Hospital Visit Paperwork
  4. Contacts (business card holder sheets) 
  5. Pediatrician Paperwork
  6. Dentist Paperwork
  7. Pharmacy Paperwork
  8. Cystic Fibrosis Clinic Paperwork
Finally the last thing that I have is a journal that I take to every appointment. I had thought about creating a form to add to the binder for this but I like the fact that a journal can fit in my purse. I write down everything we discussed, and any questions i have before I get to the appointment so I don't forget anything. I also log any illness in this book too. So when i am at the doctor I can look back and see what happened in the past 3 months.

Extra Forms for the Medical Binder
  1. Day in the Life of - The week before her appointment I know they are going to ask about her eating habits, her bowel movements etc, so I like to be prepared to answer this because I have a horrible memory and hate being put on the spot. So i just do tally marks for pottying, write down enzyme count with each food and log liquid ounces. I also keep track of sleep because some times we talk about that too. It has been a life  savor!
  2. Bubble Cover Page
  3. Rainbow Letters Cover Page
  4. Weekly Calendar Pages
  5. Monthly Calendar Page

Friday, September 6, 2013

CF Clinic 9-5-13

Weight: 22 lb 6 oz
Height: 30.6 in

We had a great visit over all, lots to talk about so bare with me. Meesha did amazing, she let them do everything they needed to without getting upset or scared once. 

She was measured and weighed on the standing scale instead of the infant basket. She said in her own chair and let them take her blood pressure, temperature and head circumference. It was so great not to have to fight with her!

Then we talked with the dietitian, we discussed Meesha waking up in the early morning hours asking for food, so we decided to try upping her enzymes to 4 6,000 instead of 3. She also put in a script for the 12,000 so it will only be 2 pills. We talked about probiotics and said we really only needed them if Meesha was on antibiotics and that breast milk works as a probiotic. She also said it helps with pooping too so that could be why Meesha poops so much (4 to 5 times a day!) she said Meeshas weight gain is great and she is developing with her curve so that was a relief. I was worried that she hadn't gained enough. 

We had to see a different doctor than our normal one. Meesha let him listen to her lungs, look in her ears, nose and mouth without a major meltdown! She even let him lay her on the table and feel her belly! I was so proud!! We talked about the flu shot which he had no information on the new one that is GMO based nor was he sure what a GMO was. :/ so I will have to call her pedi and talk to her about it. He did say it is best to stick with the tried and true one that has been out for 10 years because sometimes stuff gets released FDA wise before its really ready. 

He said that she seemed to be the size for a vest so we discussed the pros and cons and it looks like we are going to move forward with a vest. This will replace the twice daily CPT that we currently do for 20 minutes after each abuterol  treatment. 

The life coach came in and we talked about Meesha wanted to eat her pills herself. She said that she really isn't ready mentally to be doing that so that's probably why she is more chewing them. She has to be able to do a sequence of tasks with out being reminded the order to be able to do the pill swallowing. She gave me some handouts on other ways to give her the pills. 

The nurse that does the throat swabs came in next and let me tell you this is usually a holding down fight. She has to stick two long q tips one after another to the back of Meeshas throat. But this time no fight at all! She didn't even have to use the tongue suppressor! Meesha just opened her mouth for both and let her swab! So exciting!!! We've been practicing so much medical play with Dr. Mommy and it really paid off. I am so glad, now if we can get her to lay still the next time we have to take blood we will be in business. Lol

We don't have to go back until December 3 so that will be a nice break. :)