The Eve of her 7th Birthday

Seven years ago on this night, I was very pregnant with my first baby, Mia Grace, and calmed the nerves of my upcoming c-section by eating loads of my mother's homemade spaghetti and going to see "The Chronicles of Narnia" with my husband and my parents. It was such a happy night. I remember chugging down a frozen cherry Coke while enjoying a wonderful movie with my family. And, the next day, my sweet Mia was born.

Fast forward seven years: I just finished her 7th methotrexate shot (7th shot on the eve of her 7th birthday). While we are "old pros" now, it is never easy. I don't know if it will ever get "easy." But, besides the fact, we had such a good day! She had her Christmas concert at school and, not only did she have lines to recite, but she also performed a dance routine with her class. So proud of her!

So, here's to her last night being six years old. I loved every moment of it. I love her. Seven is going to be a GOOD year for my daughter! I am so thankful for her tonight. Despite all the "yuckiness" she's had to endure this last month-and-a-half, she has been a trooper. She is stronger than I was at her age. So excited to see the blessings that are in store for her!!

Methotrexate is Working!

I took my girl to see the rheumatologist yesterday for a follow-up appointment. I am very happy to report we are seeing results from the weekly methotrexate injections! Originally, the rheum told me her sed rate was 41 and has only dropped a few points since she started. Yesterday, she told me her sed rate was actually 59 when she started and has dropped to 35. The inflammation is still high in her body, but it is making its way back down! 

She has full range of motion in her big toe and again and, while she still has some morning stiffness and is limping a bit still throughout the day, the swelling is going down in her ankle. The only joint that is of some concern to the rheumatologist is her left knee (the knee that has been drained twice; the one that was swollen when she started walking when she was 18 months old). It is very swollen with lots of fluid sitting on top:

The rheum wanted to increase her methotrexate dosage to 0.6mg, but is concerned how Mia is responding so far to the injections. She had some side effects (that are too be expected): she is very tired, gets nauseous a lot, has thrown up, and complains of stomach pain. So, she wants to keep her at the current dosage (10mls/0.4mg) and continue the daily 12mls of Indocin. She had Mia repeat the urine test because of the white and red blood cells found in it and because of how frequently Mia has to go to the bathroom - she is going all the time during the day and even wakes up during the night now to go to the bathroom. She's never done that before. We should get the urinalysis test back soon.

So, for now we stick with what we've been doing and go back to see the rheumatologist on January 10, 2013. Mia will have more blood work done between now and then to check her inflammation, liver and kidneys, etc.  Her rheum said to me if the fluid does not go down in her knee between now and then and if her sed rate is still high, she will want to start her on biologic medicine like Humira or Enbrel in addition to Methotrexate. 

We asked Mia if she is able to tell a difference since she started the new treatment and she said, "Yes, I don't feel the pain as much anymore like I did." By the end of the appointment, Mia was showing the rheumatologist how she can do center splits and right splits (they are learning them in dance right now). The doctor was very impressed and even wrote it down in her chart that Mia can do the splits! :)

Tonight is our fifth shot with Mia, and our first time doing it by ourselves with no nurse at the house. We've finally got a good system down - I am the one who gives her the shot and my husband is the "Encourager/Hand-Squeezer/Hugger." We make a good team!

Methotrexate Injections: One Month In

I am very happy to report we've done some "overcoming" in the last month! We have done four methotrexate injections with Mia so far. We will do the fifth one this Friday and we are starting to (finally) get into a flow. 

Mia has done amazing. Seriously amazing. She has gone from a girl who was terrified of the needle during blood work (that she's had done over the last five years), to a completely calm and relaxed child during "Shot Night." It's a piece of cake for her now!

Her first injection, which wasn't fun for anyone, was done at her pediatrician's office so we could learn how to give her a shot:

(first Mtx injection - 11/2/12)

The following week, we started doing them at home. A dear family friend of ours, who is a nurse, came to our house to give us further instructions and to help us learn to do it at home. The second injection wasn't as hard as the first, but was still hard. We had to hold Mia down while the nurse gave the injection. It was better than the first week, but still difficult to give to her and hard for her to sit still and be relaxed.

But, by the third injection (and Mommy's FIRST time giving her sweet daughter a shot), it was a piece of cake!

(third Mtx injection - 11/16/12)

She did it. I did it. We did it. She held Daddy's hand and, while the nurse observed, I gave my daughter her first metho injection. 

We are still learning through all of this what it "okay" and what is "too much" for Mia. We give her Zofran one hour before the shot and 4-6 hours after. She gets very nauseous and very pale afterwards....and into the next day. Sometimes, it carries over to Sunday. Some days, she sleeps about three hours in the afternoon. And, she constantly has to go to the bathroom. She is extremely tired and pale during the week and her appetite is poor, but by Thursday she is on the "upswing" and starting to feel like herself again. And then, she gets a shot on Friday, and we start the whole cycle over again.

Mia has only thrown up once in the middle of the night (a few days after her third mtx injection - 11/20). She had blood work done after Week Two that showed she is anemic and her urine test showed there are white and red blood cells in her urine. So, they want us to repeat it. Rheum said it could be from the increased Indocin she takes daily (12 mls). If so, they may want to reduce it....but won't know until they see repeat urine test.

Her sed rate is still very high - was at 41 when she started mtx and has only dropped two points. It needs to be below 8). I asked the rheumatologist how long it should take for the mtx to "kick in" and she said, "Her sed rate should drop within 1-2 months. If it does not, then we will want to add in a biologic like Humira or Enbrel, in addition to Methotrexate, to reduce the inflammation throughout her body." 

So, that is where we are at....one month in. We are still overcoming...little by little...small victories along the way! 

Through the "yuck" of all of this, we are trying to keep Mia's life as normal as possible. This past weekend, she walked in her very first parade, representing her dance school. When I asked her that morning, "Are you SURE you feel okay to walk in the parade?" she told me, "Yes! Mom, I am going to push through the pain!" She's a trooper! When we saw her walk by, Jay and I were the proudest parents on the street as we cheered our daughter on. It was a victory, indeed! Granted, I did have to give her a piggyback ride near the end because her ankle and left knee were hurting her and that night she went to bed with two heated rice socks on her joints (left knee and left elbow), but she made it! She did it! It was a wonderful day for all of us!

While things are not how WE planned for it to be, we are still overcoming...each and every day! 

"He gives power to the faint and weary, and to him who has no might He increases strength [causing it to multiply and making it to abound]. - Isaiah 40:29 (AMP)

Methotrexate Injection: #1

We started methotrexate injections today with Mia. While she went in, strong and brave, ready for the first dose with her Buzzy bag in-hand....

...it did not turn out as pleasant as we hoped for. As much as we tried for weeks to prepare her, she still had anxiety over the shot (she didn't like the lime green fluid that would be going into her leg) and cried...hard.

But, we got it in - 10mls (.4mg). The nurse at the pediatrician's office, showed us how to draw up the medicine and then inject it into her leg, alternating legs each week.

She had the shot around 1:00 p.m. Tonight, she isn't feel that great and went to bed early.

We do another injection next Friday night and then wait for a "green light" from her rheumatologist (so she can check her liver and kidney levels) before we continue weekly injections. Mia's sedimentation rate right now is high - it is at 41 and should be below 8. Hopefully, with this new medicine and continued diet, we can get it back down.

Day by day...moment by moment....we shall overcome.

Buzzy For Shots!

Shot night just got a whole lot easier for Mia! My parents got her a Buzzy 4 Shots of her very own! Buzzy's unique job is to take the sting out of shots by numbing the area with the ice pack that is located underneath. Then you remove the ice pack after the area is numb and place the vibrating Buzzy on the leg. Buzzy's job is to desensitize your body's own nerves, thereby dulling or eliminating sharp injection pain. Pretty cool, eh? Buzzy is used for shots, lab draws, for bee stings, for boo-boos, for burning injected medicines or immunization pain.

We first heard about Buzzy from our friend, Addison, who also does weekly methotrexate shots for her juvenile arthritis. Every little bit helps, right!? Thank you, Addison, for sharing your tip to make shot night easier!

A Tale of Two Kids: The Same, But Different

These are my babies. They are only 19 months apart. Sweetest, dearest and most joyful kids I know (along with their two-year-old brother!). This is their story. It is a story that has caused this mommy to shed many tears along the way. With two kids diagnosed with the same auto-immune disease, juvenile rheumatoid arthritis, this journey has not been an easy one for our family. We've fought hard. 

BUT, it is also one I write with great joy (and relief!) in my heart, thanking God for putting people in our path to help us, educate us and point us in the right direction at a time when we needed it the most. 

With that said, here is my latest update on my children, Mia and Jonathan. 

This is both of their stories...the same, but different.

As many of you know, Mia (ANA+) was diagnosed first. She showed her first signs of the disease at 15-months-old. By 22 months, we finally had a answer for all the swollen joints, the limping, the pain in our daughter's body - "arthrits." From that moment on, we started on the road of using NSAIDs to control the inflammation in her body. She went from Naproxen, then to Ibuprofen, and finally switched to Indocin (her current med). When she was two-years-old, she wore a brace to bed to keep her leg straight. Mia has been going to physical therapy, "off when joints are calm and "on" when she was in a flare, for five years. She's had numerous x-rays and ultrasounds done. She's also had seven joints flare out of control where she's needed to have them drained of fluid and injected with steroids. The last five years have not been the easiest for her, but she smiles through it! I've always said that God gave her a bubbly, joyful personality for a reason. :)

While JJ was given the same diagnosis as Mia, his story is different...just as each child is different.

JJ (ANA-) was diagnosed with JRA at age 3. He had all the same symptoms as his sister - morning stiffness, swollen joints, constant pain. JJ started out on Naproxen, but it was too strong on his stomach. So, two months after his diagnosis, his rheumatologist switched him to Meloxicam, which is supposed to be gentler on the stomach. I remember the appointment clearly because she also noticed something odd with JJ - he was not gaining weight and hadn't been for a long time. He had been "stuck" at 33 lbs for too long. Shortly after that appointment, things started to spiral downward...fast.

By the fall last year, JJ was having chronic gastrointestinal distress. He would get severe stomach pain while eating, or he would vomit immediately after eating. He was constantly asking for me to heat up the rice sock for his tummy and would excuse himself from the table so he could lay down on the couch. He would skip meals all the time, because he didn't feel good when he ate. He'd have severe diarrhea for days. JJ became pale, lethargic and sickly, missing a ton of school. And, in the midst of it all, he still had horrible joint pain.

The rheumatologist and gastrointestinal doctors worked with us to try to figure out what was wrong with our son. Blood work was done and test were ordered - colonoscopy, endoscopy, upper g.i. series - to check for Crohn's, Celiac and IBD. Finally, tests came back showing JJ was "borderline Celiac," but not enough to say it was "officially" Celiac's Disease. But, the gastrointestinal doctor told us he felt like that was where JJ was heading and wanted to have JJ retested in a few months. 

Fast forward to this past spring: JJ's joint pain became worse. He started complaining of hip pain. So, ultrasounds and x-rays were ordered and, sure enough, he had fluid on his hips, wrists, left elbow and both knees. And so, we started to do all the preparations to start him on methotrexate. 

But, this is where JJ's story changed.

Dr. Don Colbert,  a board-certified family practitioner since 1987 and also "New York Times" best-selling author who has written over 40 books, including "The Seven Pillars of Health," visited our church last May - as I mentioned before, at a time when we needed it the most. Dr. Colbert is an expert on health and nutrition and has appeared on Fox News, ABC World News, The BBC, Reader's Digest, Newsweek, and Prevention Magazine. He talked about his personal testimony of healing through healthy living, and shared about how most auto-immune diseases are caused by eating the wrong foods for your body. I felt like he was talking to me. 

So many things we already knew to do for the kids as far as healthy eating/reducing inflammation was concerned (avoid gluten and dairy, avoid nightshades), but weren't doing them. Because "eating healthy" isn't an easy road....especially for kids. Birthday parties are the hardest as they want to eat whatever their friends are eating. And, parents cave and give in. But, as Dr. Colbert shared, I realized there were so many other things I had not yet discovered concerning how specific foods affect our bodies positively or negatively. Things I had not tried yet with the kids. Things worth trying!

After getting helpful advice from Dr. Colbert, Jay and I decided to hold off on starting methotrexate for JJ until we had tried a few other things with his diet first. And, we did the same with Mia. I sat down with both of my kids and told them we were going to "eat healthy to make our bodies happy." It was as simple as that and my kids were on board. (I love my kids!)

Per Dr. Colbert's advice, this is what we did:

• Started them on Vitamin D3 - 2000iu for one week then decreasing to 1000iu (taken once a day)
• Started Probiotic 225 every day (I put it in their applesauce).
• 1 tsp of cod liver oil per day (we still use Carlson's Norwegian because it is easier for the kids to take)
• 2 oz. of pomegranate juice every day (has to be the "real deal," so we prefer PomWonderful) because pomegranates suppress inflammation and joint damage in rheumatoid arthritis
• The big one: we had food sensitivity tests done (through blood work) for both kids. 

We started with JJ because, at that time, he was sicker than Mia. With JJ, we discovered he had around 24 foods that were "harmful" to his body, some higher than others:

We started by eliminating those foods from his diet. Some of you are probably asking, "So, what CAN he eat??" I plan to save that for a future blog post. :) But, I will tell you this: his gastrointestinal distress stopped almost immediately. Even JJ could tell a difference just by what he was eating. It was amazing!  He started to get color back in his face again. He had more energy. He looked like himself again! He went from being "stuck" at 33lbs to recently weighing in at a wonderful 39lbs! He won't even touch anything that has gluten or dairy in it because he can tell a difference in his own body (he won't even let you put sunblock on him unless it is "gluten-free" - ha!)

And then, the joint pain stopped. No more morning stiffness. No more asking for the rice sock throughout the day and in the middle of the night (for joints or stomach). No more medicine for JJ. Around six weeks after we eliminated those "harmful foods," we checked in with his rheumatologist and he got his first report from the doctor saying, "There is no evidence of arthritis in JJ's body at this time." Since then, JJ has been back to see the rheumatologist one other time in August and received the same report. We are going on seven months of no joint pain and inflammation and no stomach pain in his body! Thank GOD!! 

I understand it the way Dr. Colbert explained it to us in church that Sunday - the disease is still there, but it is being controlled through diet. Inflammation decreased by "eating healthy to make their bodies happy." It works and it worked for our son. And, I am happy and proud to share it! Friends and family members tell us all the time what a difference they see in him from last fall to now. He is healthy. We are beyond thankful!!

So, what about our daughter?

Mid-July, Mia started to flare again - this time in her right ankle and big toe on her right foot. So, we had the same food test done for Mia. Like I said, every child is different. And, just as arthritis affects Mia's body differently than it did JJ's, so does food. 

Her food test results were the following:

While Mia has been on a gluten-free, dairy-free diet for the majority of her life, we have allowed her to eat eggs, chicken and turkey. In fact, she loves them. And would eat them more than anything. But, apparently, she was "off the charts" for the foods that she loved to eat. So, we eliminated them. (How I cook for her is totally different than how I cook for JJ....a post for another time!)

At this point, you may be wondering, "Why didn't Mia respond like her brother did to the diet change?" This is what I know...what makes the most sense to me through all of this (and I know I am not a doctor, but I am their mother!): this disease has been with Mia longer than it was with JJ, she has been eating foods that have not helped her body or her immune system to thrive and be well, and the disease hit her harder than it did her brother (as what we know to be true about JRA - it affects girls more frequently than it does boys). JJ never reached the point that his sister did where we needed joints to be drained and injected for them to go down. The same, but different.

And, the arthritis is starting to destroy her joints. Toes are curling inward, knees are filled with fluid and are "bulky-looking" and, despite her recent joint drains and injections, the pain and inflammation are still there.

So, we do what we know to do, what we've always done: rely on the help of medicine to control the inflammation throughout her body. 

With that said, we are starting methotrexate (10mg/0.4mls) with Mia. We met with her rheumatologist today and we all agree - it is time. She will be starting weekly injections that either Jay or I will be giving to her every Friday night. She will have blood work done every month to monitor her liver and kidney levels while on this new medication. She will remain on Indocin (12 mls per day) while on Methotrexate. She will continue to stay on the diet and "eat healthy to make her body happy." And, she will continue to dance! :)

To be honest, at this point we just want relief for her body. She's been in and out of the school nurse's office since school started, icing her joints. This will help her to not miss as much school as she has been missing and just calm things down for her. 

So, those are their stories...the same, but different. Same disease, but different outcomes (so far) related to changes in diet. We are believing that over time, and through the help of medicine and healthy eating, we will see the same results for Mia as we have for JJ. That is our prayer.

Thank you for taking time to read my super long post! I am thankful to be surrounded by "veterans" who have gone before us and have offered great tips and advice for a road we have not walked down with Mia until now. I am thankful for my group of paleo/healthy eaters/veganbakers whose recipes and tips help me in the kitchen - I don't know where I'd be without you! I am one very blessed daughter to have two wonderful parents who have listened, encourage, cried with us, hugged us and supported us from far away. I am also thankful for amazing in-laws who have helped us to "dig deeper" and get to the root of the problem, who have stood with us, believed in us, prayed for us and encouraged us when we needed it the most. Our family is surrounded by a great "team," near and far, and we constantly feel your love and prayers for our children and for us. God bless all of you!

"They do not suffer pain, they are strong and healthy." Psalm 73:4

Uveitis Check-ups For Both Kids

Today, I collected my two eldest children off their busses, packed snacks and drinks, and headed to Cambridge to MERSI with my husband for uveitis check-ups for Mia and JJ. Mia is ANA+ (positive to get uveitis), which means she gets checked every three months. JJ is ANA- (negative to get uveitis). So, he gets checked every six months. So, off we went to check on their eyes.

Mia went first. I updated the doctor about her current med (Indocin, 12mls) and about her recent drain and injection. Then, the doctor examined her eyes for inflammation, looking for any cells that may be in there. After getting a good look at her eyes, we are happy to report Mia's eyes are CLEAR. This month marks five years since her initial diagnosis. We have been consistent in getting her eyes checked every three months for the last five years for uveitis and she has been, and remains, CLEAR. We are so happy! Despite the fact she is still flaring in her joints even after her recent drain and injection, her eyes are "calm and quiet." Thank you, God!

JJ was up next. My husband went in with him while I watched our youngest and oldest in the playroom. JJ, who in now in kindergarten and knows his letters very well, had some difficulty reading some of the letters up on the wall. Also, his left eye has been turning inward. I noticed it a few weeks ago while standing at the kitchen sink talking to him while he was sitting at the kitchen table. I wasn't sure if he was looking at me or not. His right eye was looking at me, but his left eye was looking over my left shoulder. I remember even asking him, "JJ, who are you looking at??"

Anyways, the doctor wants him to see a pediatric opthamologist to check on that eye. (Tonight at dinner, he told me that he sees two of me sometimes....and, it happens sometimes at school, too.) But, as far as arthritis is concerned, JJ received the report from his doctor that his eyes are also CLEAR, QUIET and CALM! Yay!! Two kids with clear eyes! We are happy parents, indeed!

So, Mia goes back in January 2013 and JJ won't need to go back until April 2013.

I am one happy Mommy tonight!

Post Drain & Injection...and Increased Meds

Just a quick update on Mia since her procedure yesterday...

Everything went as expected. The doctor put her to sleep first before giving her an IV (smart doc!) and Mia was in and out within an hour. She was very groggy yesterday from being sedated, so she spent most of the day resting on the couch. By the evening, she had a temp of 100.2, but after giving her tylenol, it went down. 

We are still waiting for her foot and toe to go back down. As we've learned from past experiences, it takes some time...

 (morning after procedure, 9/21/12)

 (morning after procedure, 9/21/12)

Looks like some kind of infection on her toenail, doesn't it? Her toe's joint was so swollen that it started pulling the skin back and away from her nail. And, the nail started growing in kinda funky. 

She still has a good amount of joint pain and has been complaining of pain in her heel. Her rheumatologist called this morning to check on her and increased her med (Indocin) from 9mls a day to 12mls, making that 6mls in the morning and 6mls before bed, to ease her pain until we meet with her in a few weeks to discuss next steps for Mia. She said if the Indocin alone is not helping with the pain, we can alternate with Tylenol, as well. While that is fine and all, I am starting to get that feeling that, just like her previous medicines (Naproxen and Ibuprofen), Indocin is no longer working for her. Since March she's had five flares in five different joints. That's a lot in just a few months.

Next month marks five years since she was diagnosed with JRA. Can't believe it has been five years already. Seems just like yesterday we were making trips to see all sorts of specialists to figure out why our daughter's joints were so swollen. Five years. Wow.

In the meantime, Mia is resting as much as possible, doing lots of reading (her fave pastime), catching up on homework and enjoying some of her favorite movies - Eloise at The Plaza, Mary Poppins and A Charlie Brown Christmas (yes, we are watching Christmas movies!!). My job: making the patient comfortable, keeping her company and giving her tons of hugs and kisses!

Make That Joint #7

Update on Mia:

I spoke to the doctor who will be doing Mia's procedure tomorrow. Originally, he was going to only drain two joints on her right foot - the outside ankle bone/joint and the big toe (making this joints #5 & #6 for her). However, Mia will now be having three joints drained and injected tomorrow as the inside of her right ankle (joint #7) is now very swollen from arthritis.

All things aside, this new doctor has been so nice to work with - very understanding and genuinely concerned for Mia. He said he would look at the rest of her foot and toes and would be "happy to inject whatever needs to be done." It's comforting to know your child is in good hands!

Mia is all too familiar with the "drill" for tomorrow. While she knows what to expect, it does not make it any easier for her. Please pray that her mind, heart and body with be at peace tomorrow (she is not a big fan of getting an IV...at all!). But, we know she will get through this procedure just like the other ones. Our daughter is a trooper! Tomorrow can't come soon enough for her...or us.

We are looking forward to her feeling MUCH better so she can get back to enjoying LIFE!

The Lord will fight for you, and you shall hold your peace and remain at rest. 
Exodus 14:14

Drain & Injection: #5

I love cold, fall mornings. I love sleeping with the windows open and waking up to a chilly house. I love how the brisk, morning air fills my lungs as I wait outside with my children for their busses to arrive. 

My daughter, however, does not. 

She's not a big fan of the cold mornings when her joints are flaring. Yes, she is flaring again. As many of you know, cold mornings are always challenging for very stiff, very swollen joints. It takes her a while to get out of bed because she knows the first morning steps are always painful ones. She has a difficult time walking back and forth to the bathroom, and standing at the sink to brush her teeth is no easy task. Most of the time, she has to sit down.

As we go about our morning routine, I silently pray for my sweet girly. I pray that today will be better than yesterday. We've been down this road enough times to know what to do first - pray and give it to God. And, then we do what we know to do for her physically - heat up the rice sock, warm baths, massage therapy, stay on top of meds (Indocin - 9mls per day), and alert her teacher and the school nurse.

About a month-and-a-half ago, her PT noticed her big toe on her right foot (the first joint that flared when she was 15-months-old) and the outside of her right ankle were very swollen. I got her in to see her rheumatologist immediately. He confirmed what the PT suspected - she is flaring again.

(big toe on right foot)

 (rear view of swollen right ankle)

 (side view of right ankle)

(front view of right ankle)

The rheumatologist recommended she have another drain and injection done because she has responded so well to them in the past. With that said, this Thursday Mia will be going back to Tufts for another joint drain and steroid injection. This will be her fifth time having this done, making this joint drain #5 & #6 for her. She will be sedated for the procedure, as she is not a big fan of watching the needle go in the extract the fluid (what kid would be?? I'd want to be sedated, too!)

For those of you who are new to Mia's journey to complete and total health, here are the other drain and injection procedures she's had done to date:

#1- left knee (3.5 years)

#2 - right elbow (3.5 years)

#3 - left knee (6.5 years)

#4 - right knee (6.5 years)

#5 - right ankle (6.5 years)

#6 - big toe on right foot (6.5 years)

She won't be going through the pediatric rheumatologist this time, though, as they don't drain and inject smaller joints like ankles and toes. They referred us to a hand and foot orthopaedist at Tufts and it has taken a MONTH-AND-A-HALF to get the appointment (Grrr!). I was hoping to get this taken care of before school started last month and dance started this month, but this new doctor is always "out of the office" and the only other doctor who does this procedure is "out on medical leave." (*sigh*)

So, third week in September it is, and we're happy it is finally here!

To ease her pain in the meantime, Mia had custom-made orthotics created for both of her feet, not only to provide her with more support and comfort to her joints, but because she has "collapsed arches." This issue is causing her ankles to cave inward, putting even more strain and pressure on her knees. Once she got the orthotics made, she said her feet have felt much better. We've had a bit of a challenge trying to find sneakers that will accommodate them - Keens and Sauconys seem to work, but they can't be laces because she can't get her foot in (and we can't get the orthotic in!). 

This school year, Mia not only has a new teacher and all new friends in her class, but she has a new school nurse. And, since school has started, she hasn't wanted anyone to know that she is in pain. So, she does not tell anyone....ALL DAY LONG! We've had numerous talks in the last three weeks about how it is okay to let her teacher know she is hurting. However, she still won't tell anyone. She doesn't want to miss out on what her class is doing and she doesn't want other "new friends" to know she is "different." I finally had to call the school nurse last week and give her a "heads up." She was so great! She talked to Mia's teacher and explained the problem. She even schedule times during the day when Mia would be "taking a bathroom break," but really going down to see the nurse to ice her ankle so her friends would not know. We are blessed to be working with another great nurse this year! 

In regards to dance, she expressed a deep desire to do tap this year. She didn't do tap last year because it was too hard on her joints, and we wanted to see how well she could handle ballet and jazz. While she did such a great job during recital time last year, it was very hard for her to sit in the audience and watch her class perform their tap routine during recital last year. She wanted to be up there with them. And then, all summer long we heard, 'I REALLY want to do tap next year! Pleeeeeeeaaaase!" So, we had to ask ourselves, "Do we withhold her dreams from her because we are afraid she might flare?" No, that would be "living in fear," and teaching her to say "I can't...," something we definitely did not want her to learn. 

So, we are going for it! When we went to purchase her tap shoes, we got the kindest saleslady (whose daughter also has arthritis). She gave Mia little pads to put in the toes of her tap shoes to give her extra cushioning - great idea! And, I called her dance school and worked out a Plan B, in the event that she did flare before recital next year. But, we have faith she will not and she will be able to perform with her class next spring. We are standing behind her dreams!!

Thank you, friends, for always standing with us, for praying for our children, and for the extra hugs and much-needed laughs on the hards days. God is good and our future is bright!

"They have no struggles; their bodies are healthy and strong." (Psalm 73:4, NIV).

Temporary and Subject to Change!

Two Weeks Post T & A Surgery:

JJ's surgery was two weeks ago today. Most kids would be up and running around again by week two, as their parents start to reduce their pain meds and life returns to normal once again. 

We will get there. We are just not quite there yet. I just called our son's ENT to request more pain meds because we almost out. And, he needs them. (Mommy Side Note: it has been over a week now since he went the ER and was later on admitted and no one has called to follow-up on how he is doing. Grrr!)

Anyways.........

JJ had his first physical therapy evaluation two days ago. Our therapist is so great...she really is. Right now, she is double booked with patients, but when I told her what happened she worked things out to squeeze JJ in. We have known her for almost six years now and she has been a huge help to all three of my kids. My kids trust her and enjoy their sessions with her, even when they are in pain. We are blessed to have her taking care of our kids.

When she took a look at JJ's neck, she looked up and me and quietly whispered, "Dana, what did they do to him?!" My thoughts exactly (*big sigh*). The good news is his chin is no longer on his chest. So, there has been some progress. But, here is what he needs help with:

• He can only turn his head side-to-side about 40 degrees.
• If you ask him to look up at the ceiling, he can only look up 10 degrees before crying or yelling from the pain. He also hunches his shoulders to be able to support his head when he looks up.
• He is compensating now for the pain when he walks or does normal activities - he will turn his entire body so he does not have to turn from side to side; he holds his head downward and is very stiff when he runs.
• When he tries to lay down in bed, he has to get on his side and lower his body down to his pillow and THEN roll over. 
• When he tries to get up from laying down, we have learned to let him do it on his own and not try to help him because when we do we unintentionally hurt him. He has to roll back over to his side and use his arms to push slowly himself up to a sitting position.
• We can not limit his pain meds at this time. He is taking something just about every 2-3 hours and during the night. However, part of the problem with that is they make him feel comfortable and he overdoes it. When they wear off, he is worse than before. The PT would like to see us start to wean him off of Ibuprofen starting next week. But, right now, I just don't know how that is possible. Nor do I feel that returning to school next week would be a good idea at this time. His therapist agreed.

In the meantime, he will be going to PT every Monday. And then, we'll come home (squeeze a nap in for my youngest) and head back to PT for Mia. He has to wear the neck brace throughout the day, as much as he can tolerate it. She wants him to keep it on in the evenings, when the pain is the worst.

Our Homework:

She wants me doing at-home PT with him twice a day (morning and night) and went over gentle massage techniques for his spine, neck and back of his head and ways to gradually get him to be able to look up again. She started to introduce some yoga positions with him, but when she saw they way his was holding his neck/head, she decided that would only do more damage at this point and he was not ready for that yet.

This will take time. I have to remind myself of this daily. As a parent, the words, "Not fair!!!" scream in my head all day long. And, I pray for extra patience and extra strength, for both of us, as I give extra hugs and extra kisses. 

Day-by-day he will get stronger and "this, too, shall pass." Temporary and subject to change!

Thank you to all of our friends and family who have passed along encouraging words and agreed with us for complete restoration to our son's body. Thank you for the "get well" cards and sweet notes - they brighten his day! 

"He heals the brokenhearted and binds up their wounds [curing their pains and their sorrows]." 

Psalm 147:3 (AMP)

Tonsillectomy Gone Bad

My daughter had a tonsillectomy and adenoidectomy last July. Minus the extreme, rare tongue pain she had afterwards and the fact that she got strep throat on top of her recovery, things went well. It was a normal T & A.

So, we used the same doctor. We liked him a lot. All things considered, we still like him....

Despite the fact that our son ended up like THIS after his surgery...in a NECK BRACE:

A mother couldn't be more mad than I am.

Seriously. A child goes through enough pain after having their tonsils and adenoids removed. I have had TWO kids who've had their tonsils out and I will be the first to tell you it is challenging for all parties involved - for the parents and the child. And, we put our total trust in the doctors who operated on them. Because we have to. But, to be injured during surgery is just unbelievable. UNBELIEVABLE!!!!

Have I mentioned how mad I am?

He is only four-years-old. FOUR. And, in a lot of pain....more than we anticipated.

It is not fair to him at all. We are on week two and he should be feeling better by now, but has this horrible neck pain where he wakes up screaming every morning. The pain is immediately and horrible. And, we can't get pain meds into him and get the rice sock heated up and on his neck fast enough to ease his pain.

Immediately after he came out of surgery we knew something was wrong. The nurse came into the hall and said to me, "Mrs. D, he is crying for you. You need to come now."

I had to climb into bed with him to get him to calm down.

Even then, it did not help. His neck/head hurt bad. He was not crying from the pain of having his tonsils removed. He was screaming from the pain in his neck and the back of his head. 

I paged the doctor several times after the surgery and he was confident that the pain JJ was having was from having his adenoids scraped. And, from nothing else. He told me our son was confused about his pain.

But, moms know when doctors are wrong. They know!

Fast forward to day six of neck and head pain....

He woke up several times during the night just beside himself...begging for us to take him to the emergency room. There was nothing we could do to make it better but to pray.

We made it to the morning and I paged the doctor-on-call who told us to bring him to the ER where his team would meet our son and my husband there (I was due to take my daughter to her dance recital that day and could not come).

My husband took JJ to the emergency room that day. They did x-rays and CT Scan on JJ's neck and head. At first they thought the pain he was having was because his bones had been misaligned during surgery. But, what had really happened was they were way too rough with him and caused muscle inflammation to the back of his neck. They admitted him, two minutes before I walked out the door to take our daughter to dress rehearsal for her spring recital. I got the text from my husband and was crushed. I had to put on a "happy face" and be there for our daughter as she danced her heart out on stage, but my the other half of my heart was with my son as he laid there in agony in the hospital.

Big Sister encouraging and praying for Little Brother who's in the hospital

But, when everything came back "clear," and there was no damage done to his spine and for us to see the rheumatologist, my husband told the doctors he was taking our son home so he could sleep and he'd bring him back in the morning. So, they gave him pain meds in his IV and sent him home. The ENT brought JJ's rheumatologist up to speed on everything and told her he'd be in to see her in the morning.

So, basically, everything was passed off to his rheumatologist (because ENTs don't deal with inflammation). The next day, we all made a trip back to the hospital to see his rheum. She told us, "I am so very sorry this happened to your son. This injury to his neck can take up to at least a month to heal."

End result: he starts physical therapy tomorrow for his neck and back of his head. And, has to wear a neck brace throughout the day to get him to lift his head up instead of walking around with his chin to his chest.

Luckily, we have a good therapist who we have been with since Mia was 22 months old. Unfortunately, we have three kids in physical therapy right now. And, that is three kids too many.

This should not have happened to our son. It sucks. Big time. But, there is nothing we can do about it. We have to pray and encourage him (daily) and hope there is no long-term damage to his neck.

What should have been a simple procedure had turned into a prolonged recovery. And, it is not fair to a four-year-old boy who already has had so much to deal with.

We ask that you stand with us and pray for a complete recovery for our son. He needs your prayers. Thank you.

Eating Healthy For Happy Bodies!

GF/DF Living!
We are approaching the end of our third week of healthy eating. All three kids have been eating gluten-free and dairy-free diet and I am very happy to report we are seeing results! After an entire year of tummy pain during and after meals, vomiting during or after meals and chronic diarrhea, JJ's stomach is FINALLY back to normal. The best part is he can tell a difference, too.

While eating his GF DF hot dog (bun included) for lunch the other day, JJ said to me, "Mom, my tummy does not hurt anymore because I am eating healthy to make my body happy!" This is truly a miracle. JJ has had a challenging year - filled with numerous tummy tests (colonoscopy, endoscopy and upper GI series) and appointments with the gastrointestinal doctor and the rheumatologist. Mealtime was always a challenge - he'd either not eat at all or would get sick immediately afterwards. Most of the time, he was requesting a warm rice sock after meals for his tummy and would not be able to get up off the couch. On really bad days, we would find him crying on the floor after he ate because the pain was just too much.

Now, he enjoys eating and is actually hungry! Such a wonderful change from the boy who was not putting on weight and was always lethargic and pale. It's such a horrible thing to see your child suffer because of food. And now, he does not want anything that has gluten or dairy in it because he can tell the difference in in his own body. We have our happy, healthy boy back! And, once he gets his tonsils and adenoids out (schedule for next Friday, May 11), he will really be able to eat!

We are slowly seeing results with Mia's joints, too. While her right knee will require a fourth drain and injection (scheduled for tomorrow), her physical therapist was very happy to report that her knee is smaller this week than last week (it was 2.5 cm bigger than the left knee and now it has gone down 0.5 cm):

Yes, there is obvious swelling, but there is no stiffness and she is completely mobile - her rheumatologist has noticed this, too. I know it may look big in this picture, but it is definitely smaller than what it was.

She also told us the fluid and swelling around her right collarbone joint is less than it was last week. Such great news! Of course, her all-too-fascinated doctors would like to schedule an MRI of her collarbone in the next few weeks, but we are believing it will go down before then. This rainy weather has definitely had an affect on both of our kids' joints.

Speaking of weather and seasons, Mia's physical therapist pointed out something interesting to me last week: Mia never flares in the summer, winter or fall; only in the spring (specifically the months of March/April). Interesting. And as I look back, I realize she is right.

• Mia's first flare occurred in March when she was 15 months old. 
• Her next big flare, which resulted in her needing to have her left knee and her right elbow drained and injected, happened in April (Easter morning) when she was three-years-old. 
• She flared again in March 2012 and had to have her left knee drained again (age six). 
• Which brings us to today - her right knee flared in April and she will being having her fourth drain and injection. (Interesting side note: the PT even told us the last time she saw Mia was April 18, 2011 and we went back to her April 18, 2012 because she was flaring again). 

Sorry, but I find this "seasonal connection" with her flares all too interesting. Yes, we've been told arthritis is not seasonal by her doctors and I know many would disagree with my theory, but come on! There has to be something said for the fact that our daughter only flares in the spring.

And, just like before when we increased her omega-3 intake, we are seeing results in her joints. JJ's, too. Both kids take 1 tsp of lemon-flavored cod liver oil every morning - with no fuss, I might add. Their pain is reduced and their immune systems boosted. We have also added 2oz of pomegranate juice to their morning routines. Mia is still taking Indocin (4.5 mls, 2x a day), but JJ is off all NSAIDs. Thank you, God!

So, despite the way things may look on the outside, we are seeing huge changes in our children's health. And, it is only going to get better!

"Everything you ask for in prayer will be yours, if you only have faith." Mark 11:24

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