Vision Therapy

In a few weeks I will be documenting Liam's Vision Therapy. We had him tested a few weeks ago and got all the results. He started his therapy Thursday September 19th, 2013. I need some time to process this new journey in our lives. As soon as I do I will share it with everyone. Wish us luck!

9 months on Apriso

Yesterday we went to Liam's GI doctor for a check up. It has been 9 months since Liam started taking Apriso. Lots of things have changed. We no longer have to break the capsule apart and get him to swallow the medicine in one big gulp with juice. He has learned how to swallow the pills. He has also not had any huge flare ups. He has had the occasional stomach pains followed with a day or two of diarrhea but then he gets back to normal. We are learning that certain foods will cause him great pain. He cannot eat any french fries from restaurants. Its not the potato that is the problem but the oil they fry it in. I often will bring fruit and some veggies with us when we go out to eat. We order him a protein like hamburger without the bun, grilled chicken, ribs, or steak to go along with the food I brought.

He has developed a dry cough. Its going on 4 months, but she said we need to just ride it out. I asked if it could be a side effect from the Apriso. She at first said " no I do not believe its from the medicine". But then later said "well I suppose anything can happen from taking a medicine everyday, but its a low percentage." I wonder if it could be a sign of Acid Reflux, but the benefits out way the cough. It also could just be something new he is dealing with since people with Autoimmune diseases often deal with more than just the initial disease itself. So for now we will ride it out and hope his body fights it.

She was very happy with his weight gain and growth. She said he has finally caught up from all the weight he loss over the years. He has also had a huge growth spurt. This says that he is absorbing nutrients and is becoming healthy. Fingers cross this just continues.

We are going to run a few labs and make sure everything looks good. Our goal is for continual good health and flare up free. If we can maintain he will go in for a scope during the Summer of 2014. This made Mike and I very happy. We have a follow up appointment in 3-4 months as long as he continues to do well on the Apriso. So far this mama is happy that her boy is doing so well.

Typical School Lunch

This post isn't just what Liam eats, but what we eat as a family for lunch. Liam has a hard time digesting raw vegetables so for him we modify. I will give examples of when we modify.

Protein:

• Turkey roll up: Turkey (nitrate free) rolled up with pickles, cucumber or  cherry tomatoes for Liam Savy my daughter will put mayo and mustard on the turkey then roll up either a pickle, bell pepper, cucumber, or avocado.  Sometimes for Savy we wrap the meat in Lettuce. Liam cannot eat any lettuce so he stick with just the meat

• Nitrate free Salami
• Nitrate free Ham
• Nitrate free Bacon
• Chicken legs
• Homemade Chicken Fingers
• Salad with veggies and left over meat (Savy eats this but Liam can't have salad)
• Steak pieces left over from dinner
• Hummus with carrots, cucumber, bell pepper, mushrooms, sugar snap peas, broccoli, and cauliflower. If you notice she is not a fan of tomatoes. Liam does not eat Hummus. He doesn't like it. I often wonder if it upsets his tummy since he has never liked it.
• Jerky

Fruit:

summer/spring

•  watermelon
•  strawberries
•  nectarines
•  peaches
•  grapes
• pineapple 
• pears
• plums
• kiwis
• berries

Fall / Winter :

• apple slices
• orange slices
• frozen or fresh pineapple
• grapes if good
• kiwi
• Packaged Dole mandarins or pineapple in a container that is in its own juices. I don't buy the ones with syrup in them.  

Veggies:

• Carrots- Liam can eat two baby carrots
• Cucumber slices- Liam can eat as long as no skin
• Snap Peas- Liam can eat a couple raw but I blanch them so he can have more
• Small Bell Peppers or Sliced- Liam does okay with these as long as its not a lot
• Cherry Tomatoes- Liam loves these
• Pickles
• Celery- Liam cannot eat Celery

Extras:

• Fruit leathers
• Bunny snacks
• Applesauce Pouches
• Fruit and Veggie Pouches
• Dried Cranberries
• Raisins
• Trail Mix: Raw almonds, cashews, sunflowers, and pistachios 
• Bars: Homemade, KIND, and LARA 
• Kettle in Olive Oil Potato Chips
• Dried Fruit
• Plantains
• Coconut Yogurt
• Jello

If you need more ideas ask away. 

Vote for Liam! If he gets the most votes he will win a free container of this sorbet.

Liam's Chocolate Nutter Butter Swirl

Vote:

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Name:	Katie Bennett
Location:	United States
Base:	Sorbetto
Flavor:	Chocolate
Mixin 1:	Fudge Swirls
Mixin 2:	Reeses Peanut Butter Cups
Mixin 3:	Reeses Pieces

Inspiration:

My sweetest person is my 5 year old son Liam. He has several health issues and can't eat many sweets. He loves Sorbet and chocolate. I made this flavor for him because we have never come across a chocolate flavor sorbet. What a treat this would be for him!

Click on link below!!!

http://contest.ecreamery.com/index.php/contest/entry/137869997268

Chiropractic care and U.C.

I am a huge believer in chiropractic care. Not just for me, but for my whole family. We have the best Chiropractor in the world. She takes such good care of my family. I love that she doesn't hurt us and that she will be honest if we are not out of alignment. A couple of years ago my husbands back was killing him. He went in to see Kristy and she said "buddy you are completely fine, you just need to exercise and get those muscles moving and stronger". His response was "do I at least get 5 minutes from your massager?" Her response was "nope". That to me speaks volumes on if you have a good Chiropractor or not.  I have been to a few before finding Kristy who would adjust me no matter what and did not care if their patients were addicted to adjustments. Kristy is the first one to turn people down. I love her honestly and professionalism.

I got off a bit topic for a moment, now back to the reason for this post. I have been taking Liam to Kristy well before he was diagnosed with U.C. He was colicky and had constipation problems when he was a baby. She was the only one who could give him relief. At first it freaked me out at the thought of anyone twisting my kid up like a pretzel and cracking him. I talked to Kristy in great lengths. She explained everything to me and was so gentle with him. He never cried, but in fact got super giddy after his adjustment. He would have anywhere from an hour to a day and eventually weeks of  relief. Eventually he outgrew his colick and the  problems went away.

When he was diagnosed with UC we asked her is she could help him. She said "I think it's worth a shot, don't you?" So once again we started seeing her and 99 percent of the time, he was all twisted in his lower spine. After an adjustment his diarrhea would not go away, but it definitely would lessen. His tummy aches would get better too.  I am all for doing whatever to make him just feel slightly better even if it's only for a day or two. Recently I found a great article. Its a good read, so feel free to check it out.

http://totalhealthsystems.com/do-you-have-ulcerative-colitis-or-any-other-form-of-inflammatory-bowel-disease-–-we-can-help-dr-rose-minkiewicz-dc-staff-chiropractic-physician-at-total-health-systems-of-macomb-county/

Apriso

So today we are starting a new medicine. Its called Apriso. He is to take two capsules a day. You may be wondering how is a 5 year old going to swallow two capsules like that. Well he isn't. I have to break them open and dump the little granules on a spoon and pour a little amount of juice on the spoon. He then takes the spoonful and chases it with water to prevent biting the granules. The granules need to stay intact because they are slow release and if he chews on them he will ruin the time release thus not allowing the medication to lubricate his colon. Wish us luck I am sure it will take some practice. Maybe one day he will learn how to swallow or they will make a kids version. 

The reason for starting this medication is because Liam has been on Prednisone since September 3rd, 2012. He started on 20 mg, and although we have gotten him down to 10 mg, we just can't seem to wean him off. He is getting wicked headaches from being on it for so long, along with other side effects. After talking with his doctor we agreed to give this a try. Many adults that I have talked to said it worked well for them. They were able to go into remission while on it. Its a medicine that you stay on even if in remission. Like his doctor said "we start this then we need to continue even if all symptoms go away." At this point I feel like its a good choice, because prednisone is so dangerous for little guys to be on. The one thing that worries me about Apriso is there is very little information on how it affects children short term and long term. Adults who take this are already developed and can chance taking it. I just pray this medicine does not affect Liam's growth, weight gain, puberty, eye sight etc. Lets hope it does what its suppose to do and allows us to wean him completely off the prednisone. My goal is January 1st 2013 for Liam to be prednisone free. I think that would be the best gift to start the new year.  I would love to hear from anyone and everyone who has been on this medication. 

Liam's Flexible Sigmoidoscopy

Waiting patiently for the Doctor to come in. 

Liam had been six months in remission and two weeks after starting transitional kindergarten he started to show signs of a flare up. We contacted his specialist Dr. Davies to see what treatment we needed to start. She put him on the usual 20 mg of Prednisone. After two weeks of no change she decided to put him on 10 days of Flagyl to see if we could get his gut to calm down. It ended up working in the sense of he stopped having 10 bouts of diarrhea a day to 2-3 a day. We had an appointment scheduled within a week, so she said keep him on the prednisone and when I see him I will do a Flexible Sigmoidoscopy. I asked her "is there any prep for that procedure?" She said "nope". I asked her if they were going to put him under for that? Her response was "no, kids do really well usually". I tried looking up Sigmoidoscopies and kids online and found very little. I tried to prepare Liam mentally for the procedure he was going to have done. I simply explained that Dr. Davies was going to put a small camera up his bottom and look inside to see if everything was okay. He looked at me with BIG eyes and said "she is putting a camera where?' "I don't think so mama". Honestly I did not know what to expect or how he was going to react, but I kept being very positive with him.

The day of the appointment he was examined by Dr. Davies. She said she wanted to take a peek inside and make sure we were not missing anything. She was chalking this flare up to be an "emotional" flare due to all the changes he had been through. My heart sunk when she told me this. My child was so stressed from going to a new school, having a new teacher (even though he knew her because sissy had Mrs. Nikki) and making friends. This made me feel so bad and that I failed him. No parent wants to be told their child is sick due to stress. We were escorted into the procedure room. She told Liam to remove pants and underwear and to lay on the table. He was not the biggest fan of being as he called it "Naked" with just a sheet over him. It was the first time I had seen my little guy (who was only 4) be self conscious When the Doctor came in, Liam looked at me with complete fear. I told him I was going to hold him and he asked to see the "camera" I gave the okay to the doctor to show him, thinking it would calm him knowing what it looked like. Boy was I wrong. That kid gave me a look of hell no mom and he tried to get off the table. I quickly layed him down and started talking in his ear telling him to breath. The doctor took that cue and started the Sigmoidoscopy. Overall Liam did a great job. He mimicked my breathing and tried to stay still. The worst part was when she took the biopsy's. He cried and said it felt like several shots were being given inside. The whole procedure lasted no more than 10 minutes. How it is performed is he was positioned on his side and she inserted a flexible tube that had a camera on it into his rectum. She did not go very far into the colon. Just enough to see if there was inflammation or ulcers.

When the procedure was finished, Liam immediately jumped in my lap for lots of cuddles then asked to get his clothes back on. Normally when we are done with our visits with Dr. Davies, Liam will either hug her or high five her. This time however he bolted out of the procedure room trying to get out. Dr. Davies said "Liam your going the wrong way and you have not said bye to me." Liam looked at her and put his hand up as if to tell her to stop and not come closer. He said " I want out NOW and you stay there." I had my dad pick him up and told him to take Liam out in the waiting room where Nana and Sissy were. I think it will be a while before he trusts Dr. Davies like he once had. It made me sad, but I think it broke her heart more. The reason I am writing about this topic is because, I had no clue what this procedure was going to be like. I had worked myself up thinking the worse and when it was all said and done it was not as bad seeing him go through it. He was very brave and not as painful as I thought it might be. We were all so proud of him that he pretty much got whatever he wanted that day and he took full advantage.