Thursday, September 30, 2010

Please Pray for Christopher

I mentioned in my last post that I recently got to know the mother of a suspected JDM child, 2 yr old Christopher from Jonesboro. Yesterday, Christopher saw Dr. Pachman in Chicago and he was then admitted to the hospital there and had a port placed this morning. She confirmed the diagnosis of JDM but believes he has some type of JDM overlap condition- a secondary autoimmune disease going on in addition to the JDM. He desperately needs to be begin treatment for the dermatomyositis as he's getting weaker daily, but they can't treat it until they confirm the other condition. The steroids would likely mask the other problem and alter test findings. Please pray that they will figure out what is going on with Christopher so he can begin treatment ASAP! Dr. P told them to expect to be there for 7-14 days so they have a long road ahead of them. Pray for his parents as well as I know they are so anxious and concerned for their little boy. My heart is just aching for them right now.

Tuesday, September 21, 2010

Praise for Pachman..... and an update

Look how beautiful Trip's fingers are!! (The scar on his index finger is where they biopsied the Gottron's papule.) The first picture was taken on July 28th of this year and I took the 2nd one today. We were told that it could take several months or longer to see significant improvement in his skin but we're overjoyed to already see these results. The Gottron's papules are now hardly visible after 2 1/2 months on Plaquenil and 2 months on steroids and chemo. Yay!!

Trip's appt. with Dr. Pachman last week went well. He was evaluated again by the physical therapist and his CMAS (Childhood Myositis Assessment Scale) went up 3 points from 39 to 42 out of 52. The majority of this improvement was in his legs. His neck seems to have improved slightly but is still weak. He can lift it for about 2 seconds so we still need to take precautions to protect his neck from injury.

When Dr. P came in the room she said, "Wow! That's a different kid." She could immediately see the improvement in his facial rash and eyes (and probably that he's put on some weight though she was kind enough to not mention that). She did want to add a daily regimen of Singulair to his meds. At the time, Trip had the sniffles and appeared to have some allergies brewing which of course could lead to infection if it's persistent. Also, a new study by Pachman has shown that a regular allergy med also improves skin symptoms of JDM. I haven't actually started Trip on the Singulair yet though because a friend recently mentioned that their ped had just taken her son off Singulair as they've found that it gets into a child's brain and we're not exactly sure what kind of long term probs it could cause. Therefore, I'm investigating that and will talk to Dr. P to confirm that it's absolutely necessary. His sniffles have now cleared up. Oh, and speaking of putting on weight, Trip has gained about 3 lbs which is alot considering that the entire previous year before treatment he'd only gained a few ounces. This is a side effect of the steroids so we pray that this will slow down since he has a ways to go on these meds.

Trip is still getting weekly infusions of Solumedrol and methotrexate every Friday in Day Medicine at Arkansas Children's Hospital and likely will continue to do so for another 18+ months. We now, over the past 3 or 4 weeks, have had a regular nurse, Henry, which has been a huge blessing. Trip still struggles with the port access but it's much easier and comforting to have a familiar face every time that knows us. The treatments are still taking much longer than we'd like. We're usually there 4 or 5 hours for a 1 hour infusion, but we (myself, Henry, and the Day Med staff) are working together to figure out how to make it quicker and easier. This week we're going to try going at noon instead of 8 am. Henry is the only full time chemo certified nurse on staff in Day Med and he leaves at 3 on Friday. So, we hope that means that we'll be there no longer than 3 hours since Henry has to give the methotrexate before he leaves. We've spent hours looking into using home health but continue to hit obstacles. Insurance will cover the cost but finding a chemo certified, pediatric home health nurse is apparently impossible. There is a local company that has chemo certified pediatric nurses but they don't see children under 8. I had hoped to just push the methotrexate myself through his port but no chemo certified nurse will train me on how to do that for fear of losing their license if something went wrong.

It occurred to me today that we never heard the results of the muscle biopsy done in July in Chicago. I called their office and it turns out the results just came back today. Dr. P will call me tomorrow to explain the findings. We've also recently had a celiac panel and some other celiac related tests run which I haven't heard the results of yet. I read several stories of JDM children who went into remission with treatment and then quickly relapsed only later to figure out that they had some type of food sensitivity (gluten, soy, eggs, or dairy) that was triggering the disease. Once they eliminated the food trigger they stayed healthy. So I requested that Pachman go on and run the celiac tests (this just test for celiac disease not gluten intolerance). If those come back negative, we're going to order a lab test on our own that's much more sensitive and broad to include other foods besides gluten. I just figure we should go on and rule those things out as being a trigger.

While we were in Chicago I heard that there was another patient from Dr. Dare's clinic here at ACH that was coming to see Dr. Pachman! I gave Dr. P's assistant my name and number to give to that family. I was so excited today to get a call from Shanna, the mother of 2 yr. old Christopher from Jonesboro. Their story was so very similar to ours so I felt an instant bond with this mother and could completely relate to the anxiety she's feeling right now each and every day as her little boy goes without treatment. They are going to Chicago next week to see Dr. Pachman so I pray that they will see quick improvement for their child like we have. I assured her that they will be so glad that they went. Their poor child has been through much more testing than Trip was put through but still haven't received an official diagnosis of JDM since the findings are all clinical. Oh, and I almost forgot, I was elated to hear that Dr. Dare had actually suggested that they go see Dr. Pachman. I assumed that Shanna and her husband found her themselves but Dare had been the one to suggest it. I was so touched and grateful to find out that our long journey has likely helped another child and family suffering from this disease. Our God is a Mighty God!.... I know Shanna and I will be in touch and I hope to get our families together soon.

Our recent prayers are this:
1. That we'll find a way for the weekly treatments to be quick and easy and less of a burden on the family (I know all things considered being at ACH 5 hours a week isn't so bad but it would be a blessing to get that time down)
2. That Trip's strength will continue to improve, especially in his neck.
3. That his weight gain and and all side effects from the meds will get under control
4. That our new friend, Christopher, will have a positive, productive appt. with Dr. Pachman and that his family will finally get all the answers they've been searching for.

Thank you, for your prayers and on-going encouragement!

Race Day

On Sunday, September 12th, Rexy got up super early to take a train to the start line of the Chicago Half-Marathon. Later that morning the kids and I took a cab from our hotel to the finish line to meet up with Rex. There was tons of congestion and great difficulty finding anywhere to park so driving wasn't a very good option. This was the kids first cab ride and first time to ride in a car without a car seat. I, the carseat Nazi, wasn't too comfortable with that but we really didn't have much choice. I couldn't exactly carry around both carseats and push the stroller once we were there.Ruby looked like such a city chic in the cab with her hat and fresh squeezed blackberry lemonade.
Waiting for Daddy at the finish line.
Great job, Rexy! We can't thank all of you enough for the near $5000 that you donated in support of our son and Cure JM. We're completely overwhelmed and humbled by your love and generosity.

After the race we took a train back downtown to our hotel which was yet another first for the kids. Too bad it was hot and jam-packed. We stood in the (my mind has drawn a blank as to what you call that) middle galley part and weren't actually in a train car.
While Daddy showered, the kids and I walked down the street
for lunch at Rainforest Cafe and then to American Girl and the Disney Store. I love being in a big city where you can walk to restaurants and shopping, but a few days of it were plenty for me......
Thank you again, family and friends, for your support. We love you all!!


While in Chicago we ventured out to Schaumburg, IL to visit Legoland! So cool!
A mini Chicago made completely out of Legos
We saw a 4D Bob the Builder show where he used Legos
There were large "Boy Scout Pine Derby-like" ramps where the kids could build a car out of Legos and race them. A big hit with both!

We saw how Legos were made and then got a little souvenir Lego.
We also went on a pirate themed ride that reminded me of the Peter Pan ride at Disney World. Again- everything was made of Legos.

We also saw some of our fave characters in Legos.....

and also some not so fave characters. Legobama! ;)

Chicago Funsies

On September 10th-14th we were back in Chicago to see Dr. Pachman and for Rex to run the Chicago Half-Marathon with the Cure JM team. While we were there we hit our usual fun spots, first, the Chicago Children's Museum.

Ruby put on quite an entertaining puppet show.

And they chilled on the big comphy couch.

Later that weekend we went to the Shedd again and Trip was thrilled as always to see the penguins. Can't wait for the new penguin exhibit to open here at the LR Zoo!

He loves the submarine too! So glad we went on and bought the membership there.

Thursday, September 9, 2010

Three Firsts for Trippy

Now that Trip is feeling better we're seeing him blossom in so many different ways. Last week when I picked the kids up from Bible study I was shocked to learn that Trip, not Ruby, had colored this picture. Now every day he's asking to color and is creating masterpieces like his big sis!
For the longest we thought it was so bazaar that Trip refused to push the pedals on a tricycle. We would show him what to do, give him a push to get started but he would always insist on scooting it around with his legs. After his JDM diagnosis we realized that it was likely impossible for him to push the pedals. Poor guy! Well, Saturday we took our bikes to the park and he took off! Video evidence is below. Praise God!
Last night I was about to leave Trip's room after putting him to bed and he randomly says, "Mommy, I can write my name." What? So I get him out of bed, hand him some paper and a marker and voila! He writes his name. Again, video evidence below. After I put him back to bed I found this Grandparent's Day card in his backpack with a note from his teacher saying "We were so impressed that Trip can write his name!" So, sorry grandparents, I think I'll have to keep this one in the special Trip box. ......Way to go, Trip! We're so proud of you and your recent accomplishments!

Back to School

Preschool is finally back in full swing. Yippee for all! Ruby is now 5 but since she has a summer birthday we decided to hold onto her 1 more year.

"Bye, Mommy! See you later!"

A Very Asian Dinner

A couple of weeks ago Rex's Aunt and Uncle, Eric and Joann, came down from Heber with their kids Harley and Waverlee (Brock was at a sleepover) and we all had dinner at Sekisui. Yes, the title of this post is a well-intended joke. When I said that I was so glad that we came to eat here and that we've been waiting for a good excuse to take the kids here 16 yr. old Harley said, "What? You've been waiting for the Asians?" Ha ha. Waverlee is from China and Joann and Harley are part Korean.
It really was a fun night , especially since we got to hang out with family that we don't see very often.
We meant to get a group picture but were apparantly too pre-occupied with the yummy food and the entertaining cooking show!
After dinner we went back to our place for dessert and a hysterical game of Loaded Questions. Thanks for the fun night Decker Fam!

Zoo Day

Finally, a cold wave (well, a high in the low 80s) so we could venture to the zoo without sufffering a heat stroke.
Ruby reunited with her nemesis, Mr. Lion McMeany! Every time we're at the zoo he tries to attack her through the glass.
hee hee
I love that Vivian is patting Ruby's tummy as if she's feeling a baby kick.
And, of course, we had to end the trip with a carousel ride.

Bowling Day

I think this post is pretty self-explanatory. It's always a fun time with Vivian & Bauer!