In His Hands

Not one of their bones will ever be broken. - Psalms 34:20

Where shall I begin?

Bear with me as I "dump" and get all of this crazy day out of my head.

We started off on the 6th floor at Tufts Medical Center today with an appointment for JJ with the ENT to check his tonsils (the same doctor who took out Mia's tonsils last summer). After examining JJ, he said he has what they like to call "kissing tonsils"....they are so close they are almost touching. And, he tells me, they need to come out in the next 1-2 weeks.

He then took at look at Mia and examined her inflamed collarbone, only to confirm it is definitely not inflamed lymph nodes, but an inflamed left collarbone joint, as Mia's physical therapist suspected, and we need to see the rheumatologist and have them do an ultrasound of that area.

So, off we go.....to the fourth floor. To Rheumatology Land.

And, yes, by this point we are all ready to head home.

Jay waits in the waiting room with our two boys while I take our sweet girly in to be examined by both Dr. Davis and Dr. Miller. 

(drawing a picture of herself and me)

They examine her joints and don't bother requesting a ultrasound or x-ray of her right knee because it is clear it is very large and very swollen. 

What they are fascinated with is her collarbone, specifically the left side.

Apparently, Mia is the first to have an inflamed collarbone joint (left side). The joint has fluid all around it and it is very squishy when they press on it. And, it hurts when they press on it. The knee hurts, too. She points to a 10 on the "pain level chart." And then, Dr. Davis examines her eyes and says he sees a "thickening and density" in her left eye (but, I am not too concerned because he is not the first doctor to say this in the past five years and then we have gotten it checked with the uveitis specialist and her eyes have been "all clear.")

Then, I suggest they do an ultrasound of the collarbone joint (which they both think is a "brilliant idea." Holy cow. Seriously? You did not consider this???). And, they send Mia down to ultrasound. 

The Radiology Department is closed by this point, but takes Mia because they find it "all too fascinating" that she has a joint they've never seen arthritis in before. 

(Excuse me if Mommy is not as "excited" as all of you are. Honestly, I find your excitement to be rather disturbing.)

Jay goes in with Mia and I wait with the boys. And, in my head a say a huge "God bless, my husband" for stepping in and switching for  a bit. Jay and I are a TEAM. Hands down. We both step in when the other needs a break. Seriously....we've been married almost 10 years now and are in such a flow when it comes to all this rheumatology-mumbojumbo. I am blessed! My kids are blessed to have such a wonderful father. :)

And, by this point, I have busted out the bag of jelly beans to hold off my two hungry boys.

After ultrasound, Mia is sent to x-ray. And, I get out more jellybeans to feed the savages. And then, she goes back into x-ray, again, for more examination.

Ultrasound and x-ray results: They discover there is no erosion or damage done to the left collarbone joint. However, there is a good amount of inflammation and fluid on that joint. 

And, we all know where this is going.....

They want both of my kids on methotrexate.

Surprise. Surprise.

But, there are several things to be done first:

Blood work for Mia. And, they are waiting to see what happens to her knee. If it does not go down before next Friday, then it will need to be drained and injected.

In the meantime, she can go to dance tomorrow and has been instructed to "self-limit" herself if she has pain. So, we will go to dance tomorrow...and I will bring the ice pack along with me, icing her knee before and afterwards.

And, JJ has to have his tonsils out.....

So, we will take each day as it comes. There is a chance that next Friday my husband will be with our daughter at Tufts having she is having her knee drained and injected while I am with our son at Tufts as he has his tonsils out. 

But, that is next week. And, this is tonight. And, this mommy is ready for BED!

And....

God still loves my babies more than I ever could. And, they are in HIS hands. Our entire family is in His hands. 

It's a GOOD place to be! :)

Fight Fire With FOOD!

What are the Food that Fight Inflammation?

Nutrition article posted on May 17, 2011 by Joséphine Beck, Digestive Care Adviser

How does food affect inflammation? There's nothing on the nutrition label to tell you this. This is why Monica Reinagel, a noted nutritional researcher, has created the IF (Inflammation Factor) Rating's system that helps to estimate how various foods may affect inflammation in the body.

The IF Ratings measure the effects of more than 20 different factors that determine a food's inflammatory or anti-inflammatory potential, including:

• Amount and type of fat
• Essential fatty acids
• Vitamins, minerals and antioxidants
• Glycemic index
• Anti-inflammatory compounds

As a result, foods with negative ratings are likely to contribute to inflammation, especially when consumed in excessive quantities because they contain known inflammatory nutrients, including arachidonic acid and saturated fat.

On the contrary, foods with positive IF Ratings contain known anti-inflammatory nutrients, including monounsaturated fat, selenium, docosahexaenoic acid (DHA) and folate.

Here are the Inflammation Factor Ratings for different types of foods:

• Atlantic salmon (farmed), cooked 1/2 fillet (178g) -386
• Yogurt, non-fat 1 cup (245g) -156
• Raisins, seedless 1 small box (43g) -145
• Long-grain brown rice, cooked 1 cup (195g) -143
• Roasted pumpkin & squash seeds 1 ounce (28g) -79
• Toasted sunflower seeds 1 ounce (28g) -72
• Banana 1 medium (118g) -60
• Whole egg, hard-boiled 1 large (50g) -51
• Corn, boiled 1 ear (77g) -50
• Walnuts 1 oz (28g) -38
• Whole-wheat bread 1 slice (28g) -28
• Miso 1 ounce (28g) -21
• Mango 1 fruit (207g) -19
• Instant oat cooked with water 1 ounce (28g) -12
• Olive oil 1 tbsp (14g) 71
• Carrot, boiled 1 carrot (46g) 77
• Broccoli, boiled 1 stalk (180g) 143
• Onion, raw 1 small (70g) 164
• Sweet potato, boiled without skin 1 medium (151g) 232
• Mollusks oyster, canned 1 cup (162g) 377
• Spinach, boiled 1 cup (180g) 466
• Atlantic salmon (wild), cooked 1/2 fillet (154g) 895
• Ginger, ground 1 tbsp (5g) 1447
• Turmeric, ground 1 tbsp (7g) 1523
• Fish oil, salmon 1 tbsp (14g) 1875

The most anti-inflammatory foods are fish oil, turmeric, ginger, wild salmon, and spinach, whereas the most inflammatory ones are farmed salmon, yogurt, raisins, to name a few. However, it is neither necessary nor desirable to eliminate all foods with negative IF Ratings from the diet. A balanced, anti-inflammatory diet will contain foods with both positive and negative ratings. The goal is to balance your food choices so that the sum of all foods eaten over the course of the day is in the positive, anti-inflammatory range.

The Top 5 Foods that Fight Inflammation

Fish Oil and Wild Salmon
Why does it fight inflammation? Both fish oil and wild salmon are an excellent source of eicosapentaenoic acids (EPA) and docosahexaenoic acids (DHA), the two potent omega-3 fatty acids that douse inflammation.

Turmeric (ground)
Why does it fight inflammation? Turmeric contains a powerful, non-toxic compound called curcumin. Research shows curcumin acts as a scavenger of nitric oxide and inhibits COX-2, a pro-inflammatory substance.

Ginger (ground)
Why does it fight inflammation? Ginger contains very potent anti-inflammatory compounds called gingerols. In addition to providing relief from nausea and vomiting, ginger extract has long been used in traditional medical practices to reduce inflammation. In fact, many health care professionals use ginger to help treat health problems associated with inflammation.

Spinach (Boiled)
Why does it fight inflammation? This dark green leafy vegetable is such a rich source of anti-inflammatory and anti-oxidative flavonoids and carotenoids: Vitamin A, B2, B6, C, E, K, calcium, folate, iron, magnesium, manganese, potassium, tryptophan, and more.

Sweet Potatoes (boiled, without skin)
Why does it fight inflammation? Sweet potatoes contain nutrients that are powerful antioxidants that help to heal inflammation in the body, including beta-carotene, manganese, vitamin B6 and C as well as dietary fiber.

Remaining Steady

There is a lot to post on regarding both Mia and JJ. So, bear with me as I bounce around a bit... 

I took the kids to see their rheumatologist the first week of April for a follow-up appointment. She took a look at Mia first, who had just had her left knee drained on March 16, 2012. After examining her joints, she told me she was very happy with how Mia looked and suggested seeing what happened if we skipped a dose of Indocin here or there because we may be able to start weaning her off of the medicine. She also ordered lab work to be done on Mia, whose results came back normal except for a slightly elevated thyroid.

Then she took a look at JJ's joints. During the exam, he had much pain and resistance in his left elbow and in both hips. She looked over a t me and said, "I am NOT happy with how he looks." She then ordered a bunch of lab work to be done in preparation for starting JJ on methotrexate (DMARD - disease-modifying anti-rheumatic drug) . She also set up another ultrasound appointment to have JJ's elbows, hips, knees and ankle checked again. 

I then spoke to JJ's gastrointestinal doctor and updated him on everything. He agreed with the rheum's decision to put JJ on methotrexate (MTX). He thinks that all the tummy issues JJ has been having for the last year have been caused by the NSAIDs he's been on, specifically Meloxicam (Mobic). He said putting him on MTX would help with all the stomach pain he's been having. He, too, ordered some lab work to be done on JJ. 

I also spoke to his pediatrician and told him what was going on. He agreed with the rheum and gastro doctors that JJ would benefit from being on methotrexate.

So, I took my boy in, once again, to be "stuck" so we could figure out what is going on with his body. They also did a urinalysis, which had to be repeated because the first urinalysis came back showing that JJ had white blood cells in his urine. 

Then, this past Friday (4/20/12), we took JJ to Tufts again for his scheduled ultrasound appointment. The ultrasound confirmed he has fluid on his left elbow, on the right hip but a more significant amount of fluid and inflammation on the left hip, and on both knees. 

In the meantime, we are getting JJ's tonsils checked again by the ENT he saw this past fall. Two doctors have commented in the last month that his tonsils look larger than normal. After complaining that food has been getting stuck and he can't swallow it, I made another appointment with the ENT for tomorrow (4/24/12). They said tonsils don't usually peak with kids until age 5. Mia had hers out last summer (she was 5yo) because she had several episodes of sleep apnea due to enlarged tonsils. JJ has had problems eating and has started snoring loudly....heading down the same road as his sister. So, we'll see what the doctor says tomorrow.

Back to Mia..........

So, my girl starts to complain of joint pain in the RIGHT knee last week, a joint she has never had problems with...ever. By Saturday, her knee is so swollen you can no longer see her kneecap. She laid on the couch all day and iced it off and on throughout the day. I finally paged the pedi rheum on-call late Saturday afternoon because her knee looked like this:

I spoke to Dr. Davis, who works with Mia's doctor, and he asked if Mia has had any infections or illnesses lately. I told him she had a little gastro bug last week that only last two days - no vomiting, just diarrhea. He thinks this bug may have set off her immune system to attack her joints and agreed we should continue with her medicine because weaning her at this point would not be a good idea.

So, they want her to come in tomorrow to be examined when her brother goes into to meet with the ENT. If the swelling does not go down, he mentioned having her right knee drained and injected with steroid this Friday. This will be her fourth joint drain and injection since she was diagnosed at 22 months of age. We stayed home all day Sunday and iced her knee, but the swelling has not gone down. We'll know tomorrow about what they want to do for Mia.

In the meantime, we have gone back to having both kids on a strict gluten-free, dairy-free diet because we know it works. We have seen results from this diet in the past. The first time we did this with Mia we saw drastic results within a month. It's all about getting to the root of the problem - their immune systems. Also, both kids are taking their cod liver oil (1 tsp a day), which is also a great inflammation reducer and joint lubricator. We are back to doing pomegranate juice every day and avoiding nightshade veggies again. Might sound a bit extreme eliminating McDonald's and pizza and ice cream and having them eat more fruits and veggies and foods that help reduce inflammation in their bodies. But, wouldn't you do whatever you possible could if it was your child?? Makes sense to me!!

And, despite all this craziness, we know God has everything under control. He is in their tomorrows. He loves them more than my husband and I ever could and is taking care of our kiddos. He guides us and directs us in the way we should go for our children. Even during their most challenging, most painful, most tearful moments (and ours), we remain steady.

People with their minds set on you, you keep completely whole, steady on their feet, because they keep at it and don't quit. - Isaiah 26:3 (MSG)

Post Surgeries

These last few weeks have been a blur.

Mia did end up having her knee drained on March 16th. Everything went very well with her procedure, besides the fact that Mommy could not be there, as planned. But, as I have learned during my six year of being a parent, not everything goes as planned. :)

For months, I have been dealing with issues with my gallbladder. Since January, I have been to the emergency room twice, and had ultrasounds, an x-ray, and CT scan done...and all the results came back negative. Still, I had classic symptoms of an inflamed, grouchy gallbladder. Thank God I have a doctor who kept pushing for further testing...who kept fighting with me to get to the bottom of this; to end this chronic pain coupled with its intolerable side effects. 

At my doctor's final request, I went in for a nuclear scan of my gallbladder (HIDA scan) the day before my daughter went in to have her knee drained for a second time (first time was when she was three-years-old). After an hour into the scan, I had a gallbladder attack and they sent me to triage and, four hours later, to the ER. As I lay there on a bed (in the hall way) of the crazy emergency room, and listened to the doctor tell me there was a problem with my gallbladder and that it would (FINALLY) need to come out, all I could think of was my daughter. My pain did not matter. Or, the fact that I was severely annoyed with the hospital and the staff for having to wait so long. Nothing mattered but the fact that I would not be with my daughter on Friday during HER procedure. That was all that mattered. It was hard. Hard for both of us as, you see, she is very connected to me as I am to her.

But...

Thank God for my wonderful husband. Thank God for her amazing father.

Jay took care of all of us that day. As soon as the doctor gave the word of what the plan was, Jay made sure I was settled in my room at the hospital and then went into "go mode." He went home that night, got three kids up the next day, dropped one off at school, one off at his sister's house, and headed into Boston with our daughter to have her knee drained to alleviate her pain. 

He was amazing - a rock during a challenging time in our family. God was with our family that day. He did not leave us or forsake us.

I went into surgery first, early Friday morning. I called my husband and let him know I was heading in. I look back on it and think, "Man, I must have been in a lot of pain to go into surgery without anyone to be there with me at the hospital; such a crazy thing for me to do on my own." But, I knew it was more important for Jay to be with Mia that day than to be with me. That's what moms do. We suck it up. We handle it. We are selfless. Always.

Mia's procedure went very well. Dr. M drained the fluid off of her left knee and, while it is still puffy even now, it is a lot smaller than what it was. 

After she woke up and was settled, Jay drove her over from her hospital in Boston to mine to visit me.  

It was so good to see them. So very good. Laughter is definitely the BEST medicine! :)

Mia and her brother, JJ, go in this Thursday for rheumatology appointments to decide what the next step is for both of them regarding the current medicines they are on. Mia has been on Indocin for almost two years now and JJ has been on Mobic for close to a year now (he was diagnosed with JA a year ago this month). JJ is also meeting with a gastro doc and did a four-hour lactose test this past weekend to determine if he has a milk allergy or not. His younger brother, James, is allergic to milk. For now, we have omitted dairy from JJ's diet. Will be interesting to see what his doctor's discover. 

Not much time for a mom to recover when there are babies to tend to. :)

Many people have commented, "Wow, you guys really got hit all at once" or "When it rains it pours!" Yes, we did get rained on. But, it really made me realize during the "stormy weather" all that is in store for us - something big for our family. God knows. He is taking care of the details so we don't have to. He is good to us. For that, I am so very grateful an have much to be thankful for.

"Thank you" to all of our friends, family, parent-friends of our kids who have made meals, prayed for us, emailed, texted, drove me all over town (Becky) or inquired as to how we are doing. We are doing well. Very well. Everyone is healing. God is so good to our family.

"But [even] the very hairs of your head are all numbered. Do not be struck with fear or seized with alarm; you are of greater worth than many [flocks] of sparrows." - Luke 12:7 AMP