Life as a Leach

Happy Rare Disease Day!  We're all wearing our specially-made Rare Disease Day shirts and would love to see you in your blue as well!  Email me at juliebleach@yahoo.com or tag me on FB with your pictures and I'll do a Rare Disease Day recap! Yesterday, Caleb got on the morning broadcast at his school and shared about Rare Disease Day and why it is important to our family.  He encouraged everybody to wear blue, so we're excited to see how many of his friends are "blue" tomorrow!  The broadcast sparked a conversation in his class about what rare diseases are, what kind of disease Abby has, and how to talk to kids with special needs.  Caleb's teacher shared with me how cool it was to see a first grader sharing and teaching his classmates about diversity in a way that adults never could. I was bursting with pride for my boy!  He truly does have a unique perspective as "the brother," and I'm glad he views it as a great opportunity to share with ot...

Rare Disease Day is THIS Friday, February 28th!  I can count Abby as double-rare, now that she's also a VEPTR kid! I would absolutely love it if you would honor Abby by wearing blue on Friday.   We got tshirts made this year that are super cute, but I'm going to save them for the grand unveiling on Friday.  :) If you wear blue, take a picture, either post it on Facebook or email it to me, and I will spread the Rare Love on my blog!  Thanks for supporting Abby and all of the other Rare kids!

So much has happened and changed in the last week...where to begin?   We saw our feeding therapist last Tuesday and decided to end therapy until after surgery.  This made me SO sad because Abby has made so much progress in the last eight months, but we really have to focus on getting as many calories as possible into Abby without burning more chewing higher textures.  We have met with a nutritionist several times last week and she gave us some good ideas.  Our goal now is 1,800-2,000 calories a day...typically kids eat 1,000-1,400.  The feeding GI (whom we love) met with us to discuss putting Abby on an appetite stimulant.  They had always been reluctant in the past, but now everyone agreed that this was the best thing for her.  She's been on it for 3 days now and we haven't seen much of a difference, but we are still working her up to the full dose.   Her weight was down at that appointment, and I was so concerned.  How could she be l...

Pups of the Spirit  is a book written for preschool-aged children, and my kids loved it!   Through rhyme and a pack of lovable dogs, kids can learn about the nine fruits of the spirit:  love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control.  I read this to the kids before bedtime and it is now a new favorite!  In fact, Abby was very disappointed that I took it out of her room to write my review.  :)  Both kids had their favorite dog...Abby's was Joy, of course! The illustrations were bright and cheery, and the details included in each picture were noticeable.  I especially loved how this book sparked conversation about the fruits of the spirit.  It was a really good way to introduce the concept, and I'm sure that I will be able to refer back to the book in future conversations.  The explanations of each "fruit" were simple enough for young ones to understand, so I even plan to bring t...

If you are interested in learning more about what the VEPTR is, you can visit here and watch the videos below. What is early onset scoliosis?  Why is it different than "regular" scoliosis?  What is Thoracic Insufficiency Syndrome? This video explains some of the testing Abby has had or will be having. Here, you can see what the VEPTR looks like and how it is implanted and expanded.  (This is not from CHOP, but it is done the same way) We have some other videos we were sent on a disc, but these are the ones I could find on You Tube!

Given the most recent "storm" we are in, I Will Praise You in the Storm was a very timely book for me to read.  I found myself really identifying with the author, Danny Deaube.  He is the father of two children who had rare liver diseases, and this book is all about his experience with raising two medically fragile children. It speaks a bit of the frustration and stress that is a part of the daily life a special needs family, but most of the book is a recount of the medical experiences and surgeries his children had.  Both children underwent liver transplants at young ages, and while Deaube's son survived the transplant and lived to be in his thirties, his daughter died from complications. As I said, I really could relate to a lot of what the author said.  Like him, we live a life full of hospitals and doctors, while trying to keep our daily routines as normal as possible.  But what I feel was lacking in the book was the raw emotion that comes along wit...

We are home from our visit at CHOP.  I'm going to apologize in advance if this isn't my usual style of post.  I'm exhausted, both mentally and physically! Abby ended up having five appointments/tests done:  CT scan, Pulmonary Functioning Test, X-ray, and appointments with the pulmonologist and orthopedic surgeon.  We managed to get to our appointments on time on Thursday.  After debating whether to call a cab, drive, or even walk, we decided to see if we could drive in.  It ended up being fine. After the CT and PFT, we saw Dr. M, the pulmonologist.  He went over the results and shared his thoughts, but deferred to Dr. C, who would be the one doing the surgery.  So we really had to wait until Friday to get the answers we wanted. We saw Dr C this morning, who went over the CT and PFT, but then asked why we didn't get an xray.  (We were told during the scheduling process than an xray wasn't necessary...)  So, back to radiology we went...

I called CHOP today to make sure we were still on for Thursday (I'm not so worried about our Friday appointment--I think everything should be clear by then.), and we are!  I made sure it was noted to call our cell phone if anything changed, but our plan is to make it to all 4 appointments.  We have located all of the hotels within walking distance to the hospital so that we can just walk there if needed.  The snow pants and boots are packed, and we have plenty of hand warmers and a few blankets stashed in the car. I think we are ready! I have started praying that God will make it blatantly obvious if we need to do this surgery.  I need to know very clearly that VEPTR is the way to go...rib pieces overlapping on a CT scan, significantly decreased pulmonary functioning, etc.  Otherwise, it will tear me apart to agree to something that is such a life change when Abby is currently doing so well. Will you pray with me?  (and maybe for a little peace for Mo...

I have one tough little girl!  She deals with so many doctors' appointments and medical procedures.  Through it all, she has a smile on her face and a hop in her step!  I'm amazed that a child with so many obstacles in her life is still so happy! We've recently started talking openly about Abby's ribs with her and how Dr. C is going to fix her ribs.  We're obviously not going into detail about the surgery, but we wanted to start an open discussion so that she would get more used to the idea if and when we actually move forward with surgery.  It seems to be helping, because she's been telling everyone that Dr. C is going to fix her ribs!  (Say it in a sassy voice with your hands on your hips to get the full effect!) Today's adventure was ophthalmology, where we discovered that Abby's eyes are still crossing quite a bit.  After discussing giving her bifocals (for a three year old!!! ) he finally decided that it would be too hard to explain to her how...

I recently found out that the lead singer of Sanctus Real has a medically fragile child.  His son, Bowen, has Hypoplastic Left Heart Syndrome, a rare, serious heart problem.  This is the same syndrome that the infant son of a teacher-friend of mine has, and he is currently fighting hard in the hospital!   As I was reading Bowen's Story , I learned that many of Sanctus Real's songs were inspired by their story.  When I read the lyrics to this song, they definitely tugged at my heart strings.  He gets it.  He gets it in a way that only the parent of a medically fragile child can. We're heading to CHOP next week, so this was a very timely reminder as we continue to discover God's plan for Abby's life. Love You Tightly It's my reality, you don't belong to me I know we're living on borrowed time And when I look at you, I can clearly see A gift that I may only hope for a while So while we still have time I'll love you tightly but hold you l...

I am starting a new venture on my blog!  My sweet neighbor (who is also a blog reader!) saw that I was enjoying reading again and she recommended Book Looks.   Basically, I choose books each month to read and write reviews about them on my blog.  In exchange for my honest review, I get to keep the books!  There are some that can be downloaded as e-books and some that can be mailed to you as hard copies.  The company has TONS of books from which to choose, and it is constantly adding new ones.  This is a Christian publishing company, so it has everything from Bibles, to devotionals, to fiction, to biographies, to commentaries.   I will probably be reading a lot of different types of books over the next months! My first book is I Will Praise You in the Storm .  I just downloaded it, so stay tuned for my review!

Since Abby's tubes were put in her ears January 15th, she has continued to have a lot of ear issues.  Her ears began bleeding again well after they had stopped post-op, so our ENT put her back on Ciprodex.  (If you are looking for a good stock purchase, Ciprodex might be it.  I think Abby is responsible for most of its financial success.)  The nurse practitioner said to call if she wasn't better in a week, and she would see her when we were coming up for Abby's feeding evaluation on Thursday. Welp, they were no better, despite pouring Ciprodex into her ears twice a day.  In fact, her right one was definitely worse.  So I called ENT on Wednesday to make an appointment for Thursday afternoon.  Dr. T. wouldn't be able to see her because he was in surgery all day, but the NP could.  We went straight there from the feeding clinic at MWPH (a 10 minute drive with an extra 20 minutes of driving through the parking garage trying to find a space!!!) ...

Have you seen this commercial about Seattle Seahawk Derrick Coleman?!? I first heard about it on our local Christian radio station.  What an inspiration to everyone, but especially special needs families! Well, two little girls who are hearing impaired thought he was pretty inspirational too.  They wrote him a letter and their dad tweeted it to Derrick Coleman.  He wrote back, much to the girls' delight!  Then he surprised them with a visit as they were being interviewed on Good Morning America!!!  The icing on the cake was tickets for the family to go to the Super Bowl!!  What a great guy. I love this story and the message it sends to all the kids who have to work harder than most to accomplish their dreams.   As much as I dislike football and only watch the Superbowl for the commercials, I'll be cheering Derrick Coleman on tonight!

We went to a feeding team evaluation last Thursday, where a whole group of therapists and nurse practitioners watch her eat, ask a bunch of questions, and develop a new feeding plan.  This was our first eval since exiting the feeding program because Abby got sick for the first one, so these therapists last remembered her reluctantly eating purees and often refusing to drink her milk. Imagine their surprise when they saw Abby taking bites of a peanut butter and jelly sandwich, drinking her milk out of a open cup and straw, and eating an applesauce pouch independently!! They were very impressed at how far she has come. Of course, they had a few concerns too.  Abby only gained an average of 3 grams per day, and she was supposed to gain 6-10 grams a day.  She's hanging onto that first percentile, and hasn't gotten any taller since this summer.  (That is a separate issue...)  She's also having a lot of tummy issues, which they believe is from not drinking enough ...