Autumn ~ Spring 2013

Here are some of the things that have been going on with Autumn lately...

She's in second grade this year and is reading well.  She loves school, and I enjoy seeing her gradually becoming more social each year.  Organization is not her strongsuit.  She often reminds me of Pigpen (from the Peanuts cartoon)  - with a cloud of dust around her everywhere she goes.  But, she's creative, and I enjoy reading the stories and songs she sometimes writes.  She also loves music, and the ipod she got for Christmas might as well be her third arm.

Last August, we had a follow-up with her doctor in Atlanta that has been trying to decide if the problems with Autumn's mitochondria are primary or secondary.  Some new tests were due to come out within a few weeks of our visit.  The testing is finally complete, and we're scheduled to return to June to hear the results and see if they were able to find any new information.

The day after we returned from our trip to Atlanta, Autumn had surgery to have her ear tubes removed.  They were taking a long time to heal, but they were finally closed back up at our last visit, and we were able to avoid another surgery.  Yeah!!!

Much of this school year has been focused on trying to find her an ADHD medication that worked without causing any unbearable side effects.  FIVE medications later - we still haven't found anything.  Here a few of the issues we're having.  First, when she first moved in with us, she had some pretty severe anxiety issues.  So far, any of the stimulants we've tried have brought back her anxiety (along with many other problems) and there was no way we could continue those.  Second, Autumn cannot swallow pills.  Anything we try must come in a small tablet (that I can put inside a raisin) or we can't get it in her.  Third, some of the non-stimulants completely knocked her out.  She was barely awake all the time.  Fourth, one of the medications made her heart rate/blood pressure drop, and we had to discontinue.  Finally, all of the ADHD medications interfere with her eating and weight gain.  At the advice of the GI doctor, we have had to quit trying new meds in order to try to get her weight back up.

Her weight issues are pretty bad right now - bad enough that the GI doctor has mentioned a feeding tube a couple times - to get extra calories in her overnight.  I just can't end up with two kids on a feeding tube!  How crazy is that - when they are not even biologically related?  I knew Silas needed one, but I'm not convinced it's the best thing for Autumn.  For now, we will try to increase the amount of fat and calories in her diet.  We'll see the GI again this summer to see if it's helped.

Without the ADHD medications, she barely hangs onto the growth chart.  With the meds, she falls completely off the chart.  And so, our medication trials are on hold for now.  She's very fidgety and has to be told at least 10-15 times to find her shoes and brush her teeth every morning, but she's managing to make it through second grade.  Overall, it could be worse.

After stopping the meds, we had problems getting rid of the all of the irritability.  I'm in the process of going through anything new we've started this year to find the culprit.  Hopefully, I will have that figured out soon.

Her walking has not been as good lately either.  I'm hoping that whatever is causing her irritability is also affecting her walking.  They have said that her muscle problems could become degenerative, and I'm hoping that's not what's happening.  I've come across several things lately that talk about how some kids allergic-like reactions can result in inflammation in the brain.  Very interesting stuff.

I'll update on Silas next time...

Janel

More Surgeries

Silas has been recovering VERY slowly since his G-tube surgery.  It was about 3 weeks before he really started playing again, and it's still sore to the touch.  He's been at school, and the year's off to a good start.

from a few months back...

On Tuesday, September 11, my mom had surgery to remove a mass from her abdomen.  They originally found the cancer four years ago.  It had started in her appendix and spread throughout her abdomen.  She had surgery to remove it as well as chemo.  The doctors said she would need to do this again every 3-4 years or so.  This spring, the cancer had regrown to the point that they needed to operate again.  She went through another round of chemo before having surgery.  In August, she found out that is was growing again.  They went back in to remove the largest of the growths.  There are others that they were unable to remove.  Please pray for her as she recovers from the surgery.

Last week was Mitochondrial Disease Awareness Week.  Ironically, Autumn had an appointment with her Mito doctor in Atlanta.  They have never known whether Autumn's mitochondrial problems are primary or secondary.  Some new tests are coming out in the next few weeks that could possible help us find out some of the answers we've been looking for.  Keep your fingers crossed.

The day after our trip to Atlanta, Autumn had the surgery to remove her ear tubes.  That went very smoothly, and it hasn't set her back a bit.

Janel

The First Week of School

Our school's Open House was the Thursday before school started - just three days after Silas' surgery.  He was in no mood to travel, but we thought it would do him some good to see a few friends.  He's such a people person.  So, we borrowed a wheelchair and rolled him in.  We were right.  He smiled as we ran into several familiar faces.  But even though he was in the wheelchair, just riding around for an hour completely wore him out.  We met the new teachers, left all the new school supplies, and headed home.  Looks like it's going to be a good year.

On Friday, I had a meeting with the 504 Team in order to have Silas' 504 Plan in place before school started.  It went really well, and I was relieved that they were so understanding.

Silas was no where near ready to go on Monday, so I didn't even try to wake him up.  So, I was able to spend the first day with Autumn.  Here she is before we left the house.

And here she is in her new classroom.

The structure at school is good for her, and she loves being there.  Sometimes when Criss takes her to school, he'll joke with her and try to get her to run away to the beach with him for the day - and she always refuses!  She likes school that much.  (Me on the other hand, I would go to the beach in a heartbeat.)

Tuesday morning, we got Autumn to school on time while Silas was sleeping in.  As soon as he woke up, he stated adamantly, "I want to go to school."  He had yet to walk more than a few yards, but if he wanted to go, I'd help him get there.

He was still irritable, and would not let me take his picture, so I snuck these of him from behind as we were leaving the house.

We wouldn't have won any races, but we VERY, VERY slowly made it down the long hallway to his classroom.  I wasn't sure how long he'd make it.  The goal was for him at least get to meet his new classmates.  First, the counselor came in and talked to the class about Silas' tube - giving everyone time to ask questions.  Then, they were going to read a book and make a craft - so he decided to stay for a bit.  (Craft time is his new favorite thing.)  He was still in such bad shape that I sat in a room down the hallway - just in case.

He stayed a few hours before he needed to leave.  He even let me get a picture (the front view this time) before we left his classroom.

Wednesday and Thursday were about the same - he went for 2-3 hours each day.  And on Friday, he made it almost the whole day.

So much for having the surgery done before school started so that he wouldn't miss any school...  At least school was motivating him to move.  When we got home on Tuesday he said, "Don't forget you owe me quarters for all that walking."  J

Janel

There's No Place Like...

…the doctor’s office waiting room. J  Just when I think we’re nearing the end, another appointment creeps up on us.

For example, Autumn had to follow up with her neurologist this summer.  The neurologist wanted us to have Autumn’s hearing checked again (along with a number of other things).  The subsequent visit to the audiologist led to today’s visit with the ENT.  Today’s ENT visit now has us scheduled for surgery in September. L It reminds me of the book, If You Give A Mouse A Cookie.

Autumn’s had ear tubes put in twice.  The second set of tubes has been in 3 ½ years now, and they are long overdue to be removed.  You see, they are supposed to eventually fall out on their own, but there are a select few (like Autumn) who have to have them surgically removed because the tubes decide not to come out on their own.  It’s not that I’m worried about the surgery.  (If I’m counting correctly, this will be the 9^th time she’s been put to sleep for a procedure.)  It’s just that I would like to be one of those “normal” people who doesn’t know all of the nurses in One Day Surgery on a first name basis. J

Here’s a review of all the places we’ve been just since May…

·         May 1.  Silas saw GI doctor.  Tried Entocort.  Think about NG tube.

·         May 3.  Autumn had to see Orthopedist.

·         May 10.  Autumn & Silas supposed to go to the dentist on the same day.  Autumn had a fever, so I had to reschedule her appointment.

·         May 21.  Autumn goes to Dentist.  Find out she has two cavities.  (Maybe because she likes to eat the toothpaste and not actually brush her teeth?  Just guessing.J)  Of course, they’re on two different sides of her mouth, so they can’t be done at the same time.

·         June 5.  Autumn goes back to Dentist for cavity #1.

·         June 18-19.  Silas sees GI doctor that morning then is admitted to hospital to get NG tube.  We stay overnight at hospital.

·         June 21.  Autumn goes to Dentist (yet again) for cavity #2.

·         June 27.  Autumn sees her Neurologist.  Had to go to Children’s for lab work afterward.  Doctor had us schedule follow-up appointments for the heart doctor, audiologist, and doctor in Atlanta who did Autumn’s testing for mito.

·         June 28.  Autumn follows up with GI doctor.

·         July 3.  Autumn sees Pediatrician about ADHD medication.  (The ones we tried last year made her CRAZY!  Have to find something different for the new school year.)

·         July 9. 

o   Autumn sees Audiologist in AM.  She finds some abnormalities.  Have to see ENT.

o   Have Silas’ arm x-rayed at doc-in-the-box.  Buckle fracture.  They don’t have anything waterproof or removable.  Have to see Orthopedist.

·         July 11.  Silas sees Orthopedist and gets brace for arm.

·         July 12.  Silas sees GI doctor.  Gained 5 pounds with NG tube.

·         July 23.  Autumn sees cardiologist.  Everything still looks good.

·         July 24.  Appointment about Autumn’s ADHD medication.

·         August 9 (today).  Autumn sees ENT.  Has to have surgery to remove ear tubes.

In case you lost count, that was 18 appointments.  And still to come…

·         In August

o   Silas’ G-tube surgery.  Will stay overnight in hospital.

o   Meetings with Silas’ school about starting school with a feeding tube.

o   Autumn has follow-up apt. about new ADHD medication.

·         In September

o   Autumn sees Mito doctor in Atlanta.

o   Autumn’s surgery to remove old ear tubes.

Makes me tired all over again just thinking about it.   But one day...

“He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning nor crying nor pain anymore, for the former things have passed away,”  Revelation 21:4.  (In other words, no more doctor’s office waiting rooms.  Yeah!!!)

Janel

Something to Celebrate & A New Favorite

Today is the two year anniversary of Autumn’s adoption.  We were her foster parents for 3 ½ years before that, making her part of our family for about 5 ½ years now.  I am so thankful for how far she’s come since we first met her, and I look forward to seeing even greater things in her future.

To celebrate, we gave her a bag of candy from Indie Candy in Mountain Brook.  It looks like this is going to be one of my new favorite places.  It’s the only place I’ve ever found that has candy that his gluten, milk, & CORN free.  It’s an absolute miracle!  She was thrilled this morning.  If you have a child with multiple food allergies or sensitivities, you MUST check out their website.  I haven’t tried it, but I’m pretty sure they offer shipping.  I’m not sure about international ordering, but you can ask them.

I bought her a chocolate teddy bear, a bon-bon, gummy animals, suckers, etc.  The people who work there are SO nice and super helpful.  If any of you are on the Feingold diet, they have foods that can be eaten on state 1 and stage two of the diet.

We love you, Autumn!

Janel

30 Things About Living With Mito You May Not Know

One update I forgot to share in the last post...  Silas' local GI ran a diagnostic panel for Inflammatory Bowel Disease.  (It's not 100% but fairly reliable.)  Silas' bloodwork was not consistent with IBD.

In my last post, I mentioned that this week is Mito Awareness Week.  Inspired by this blog, here is my list:

1.      The mitochondrial disease our children are affected by is:  Autumn has a Complex I dysfunction.

2.      Our children were diagnosed with it in the year:  Her original muscle biopsy in May of 2008 showed low activity for Complex I.  (It took nearly a year to get the results.)  Since the first biopsy was frozen, the neurologist had us do a second (fresh) muscle biopsy (in August of 2010) to confirm.

3.      But they have had symptoms since:  Autumn had signs of gross motor delay since we first met her at 9 months.  Other symptoms took a little longer to notice.

4.      The biggest adjustment our family has had to make is:  Going to countless doctor visits and therapies in addition to the numerous procedures she’s been through.  I think she’s been put to sleep 8 times already.  When she was younger and in Early Intervention, we had 3-4 appointments or therapies each week for several years.

5.      The mito gene our family has is:  Since Autumn is adopted, it is even more difficult for them to find the genetic mutation.  They have checked for the most common ones and have not found it thus far.

6.      I explain mitochondrial disease to others that inquire by:  I say the doctors always describe mitochondria as the “powerhouse of the cell.”  They are involved in just about everything your body does.

7.      Most people assume:  That she’s okay because she doesn’t look sick or that she’s better because she doesn’t have to use her walker any more.

8.      The hardest part about mornings are:  Getting her to eat breakfast!

9.      The hardest part about nights are:  We use to have problems getting her to settle down at night (or waking up screaming in the middle of the night).  But, that’s going well right now.

10. Each day our children take:  Autumn takes five different medicines or supplements daily.  She takes a total of 13 different tablets/doses.  The medications are taken throughout the day during four different time slots.

11. Regarding alternative treatments we:  She sometimes sees a chiropractor.  He’s helped with general congestion (ears and chronic cough) as well as potty training.

12. A mito-related organization I support is:  Just starting to learn about all of the groups.

13. Mitochondrial disease affects our children’s education by:  Autumn has an IEP and receives speech and physical therapy services at school.

14. People would be surprised to know:  How much effort it takes to keep her regulated and how much work it has taken to get her to where she is today.  People would also be surprised by how loud she is at home – she’s so quiet everywhere else.

15. The hardest thing to accept about mitochondrial disease has been:  The unknown.  Any illness can trigger an irreversible progression of the disease.

16. Something we were never sure our children could do with their illness that they did was:  Walk a mile!  Autumn was signed up for the Mercedes Kids’ Marathon last spring, but she ended up in the hospital with complications from the flu.  She did, however, get to participate in a “Miles for Missions” walk organized by our church.  We weren’t the fastest two out there, but we made it to the finish line.  She really slowed down about halfway through, but she never complained.

17. The awareness about mito:  Is very hard to find.  The information about each form is very limited.

18. Something we really miss doing since affected by mito is:  Since both kids have so many food intolerances/digestive issues, I miss fixing one dinner that the entire family can eat.  I miss the days I could leave the house and not worry about having enough food to keep everyone fed while we’re gone.

19. It was really hard to have to give up:  We knew Autumn had health concerns when she moved in with us.  I’m not sure we every “gave up” anything.

20. A new hobby they have taken up:  Autumn has really enjoyed learning to read.  She is also very crafty and loves to create things.

21. If they could have one day of feeling normal again they would:  Autumn has a lot of food intolerances.  My guess is that she would want to eat junk food all day.  J

22. Mito has taught us:  To appreciate every small victory and treasure the good days.

23. Want to know a secret? One thing people say that gets under my skin is:  Autumn has a lot of food intolerances, but she’s also very picky (a lot of it related to her sensory processing issues).  I tried to talk with the neurologist about the problems I’m having with Autumn suddenly deciding not to eat certain foods any more.  She said, “Well, just don’t let her.”  I’d like to see her try it.  I’ve learned that there are certain things that you can’t make a child do.  Eating is one of them.

24. But I love it when people:  Comment on her positive attributes – her great smile, her resourcefulness and determination.

25. My favorite motto, scripture, quote that gets me through tough times is:  Psalm 73:26, “My flesh and my heart may fail, but God is the strength of my heart and my portion forever.”  There are many more…

26. When someone is diagnosed I’d like to tell them:  We’ll try to figure it out together.

27. Something that has surprised me about life with mito is:  All the wonderful people we’ve met along the way.

28. The nicest thing someone did for us was:  Magic Moments granting Autumn a wish – a trip to Disney World!

29. I’m involved with Mitochondrial Disease Week because:  I hope to help someone else find their way through this maze.  I also want to help educate those who know someone with mito.

30. The fact that you read this list makes us feel:  Grateful.  If you made it all the way to #30, I appreciate your support!

Janel

Catching Up & Mito Awareness Week

My hopes of catching up the blog once the kids started back to school have been pushed aside by daily tasks and activities.  I have a master’s degree in Elementary Education, and I’m in the process of adding an endorsement in Special Education.  I have one more class to take, and then I will student teach in the Spring.  The online course I’m taking is squeezed into 8 weeks, so I’ve been working on that constantly.

I’ve mentioned before that I sometimes work as adjunct faculty at SEBC.  I have taught a class on Children’s literature every other spring for several years now.  A few weeks before school started, they contacted me to see if I’d be willing to teach Curriculum Development this fall.  I was glad to do it.  However, the first time you teach a course, it takes a lot of time to pull it all together.  So, between taking a course through Liberty and teaching a new course at SEBC, I haven’t had time for much else.

It also didn’t help that Autumn ended up sick at home for three days of her first full week at school.  I have mentioned the new (or increased) medications they are trying with her.  It is going well so far.  I am seeing some small improvements in language and gross motor activities.  That is encouraging.  We see her neurologist again next week, and we’ll see what she has to say.  The immunologist redid the ANA Test, and it came back positive a second time.  The NK function test also showed low resistance to candida (yeast).  We’ll have to see what he says about everything at our next visit. 

Silas seems to be adjusting pretty well to Kindergarten.  We have his week long appointment on South Carolina scheduled for the end of the year.  We’re just trying to keep him steady until then.  We saw his GI doctor here in town a few weeks before school started to get some forms, etc. signed for school.  He basically said to just come back when we need him.  He doesn’t know what else to do.

Not too much longer until our Magic Moments trip to Disney World.  I’ll definitely have to write about that one.  J

September 18-24 is Mitochondrial Disease Awareness Week.  It can be very difficult to find helpful information about Mito.  I ran across the blog of a mom that has three kids with Mito.  The information she shares has been so helpful.  I am putting links to some of her posts below if you’d like to learn a little bit more about the disease.

Mito What?

Mito Fact a Day – Days 1-7

Mito Fact a Day – Days 8-14

30 Things About Living With Mito You May Not Know

Over the weekend, we were sitting together and talking with the kids.  I asked Silas if he thought he might want to play some kind of sport one day.  He said “Yes,” so I asked what he might like to play.  He said, “Golf.”  It was very humorous because no one in our family plays golf, we don’t watch it on TV, and the only golf experience he’s ever had is one night at a putt-putt type of place – and he didn’t even like it.  I just had to laugh.

As always, thanks for reading!

Janel

My Article

I’ve scanned the article I wrote, and I’m going to try to post it.  (If you missed the explanation, look a couple posts back to “I’m Published!”)  ABCH generally does not mention their foster children by name in their publications, so none of our names are used.

I believe you can click on each picture, and it will bring it full screen so it’s easier to read.  If not, grab a magnifying glass, and we’ll hope for the best.

Janel

Taken from LifePrints, July & August 2011.

Labs

We’ve heard back about some of Silas’ labs from when we went to SC, and Autumn recently had a follow-up with the immunologist.

I’ve mentioned the wide range of responses that I get from doctors regarding Silas’ health.  Some see that he’s gaining weight and seem unconcerned that he’s not getting an adequate diet.  Others act like I’m a horrible mother because I’m not adding in a multivitamin – even though every one we’ve tried so far has made him scream in pain.

Dr. M’s nurse called and said that Silas’ prealbumin levels are off, which means he is starting to show signs of malnutrition – even though he is gaining weight.  His BUN was also off.  They said he is most likely not getting enough fluids.  This is the second time a test has indicated that.  What is puzzling is that all he drinks is water, and he already drinks about 30 oz. a day.  I’m not sure what that means at this point, but I’m supposed to try to increase his water intake.

I’m not sure how to correct the malnourishment when he cannot tolerate sugars – even the good ones in fruits and vegetables.  Dr. M had given us some Neocate Splash to try, but it didn’t go well.  Silas still hasn’t completely recovered from that yet.  Dr. M’s dietician is very nice, and talked with me over the phone for about 30 minutes, trying to figure out some type of supplement he could take.  Since he’s able to swallow small pills, we’re looking into breaking adult pills into smaller pieces.  Adult pills generally do not have the sugars that are added into all of the children’s supplements.  We can only hope this will work.

Autumn recently had her follow-up with the immunologist (Dr. I).  It was during our last visit with Dr. I that she fainted, hit her head, and had a seizure.  (See this post for the details.)  He took more blood before we left.  He wants to see how her body processes vaccines.  He is also redoing her ANA Test (which was positive last time) as well as adding tests for antigen stimulation and NK function.  He can’t say exactly what the positive ANA Tests means, but it could be an indication that something else is going on.

I warned the nurse that Autumn is prone to vasovagal reactions, so they had Autumn lay down on the table (instead of having her sit up in my lap) to take her blood.  What is so ironic is how much Autumn talks while they are taking her blood.  For most doctor visits, she will not speak to anyone, but when they go to stick a needle in her arm, she talks non-stop.  In the past, it’s been a somewhat of a normal (quiet) voice.  Not this time.  She protested loudly the entire time.  I felt very sorry for everyone in the waiting room.  Some of their children had not yet realized they were about to be poked until they heard Autumn’s cries for help.

Here are some of the things you would have heard if you were in the waiting room that day:

“No!”

“Are you done yet?”

“AHHHHHH!”

“You’re hurting me!”

“Done.”

“AHHHHHH!”

“I want my daddy.”

“Done.  Done now.”

And when I tried to assure her that she was going to be fine.

“No, I’m not going to be okay.”

“AHHHHHH!”

Although there was no throwing up or seizures this time around, there were several moments when she lost consciousness for just a few seconds.  She would be in a middle of a scream, suddenly close her eyes and go to radio silence and then, just as quickly, open her eyes and resume screaming. 

She was very pale by the time they were done.  I made sure she got up very slowly and sat with her a few minutes before we left to make sure we didn’t have any of the complications we had last time.  As I carried her out of the lab room, everyone in the crowded waiting area just stared, trying to figure out if we were the ones responsible for all of the loud, torturous screams.

I just smiled, held my head high, and carried her to the van.  At least we made it out of there without puke all over our clothes or another seizure.

Janel

I'm Published!

After Autumn finished her time in TheraPlay, her counselor asked if I would write about our experience.  ABCH produces Life Prints, a small bimonthly magazine.  There was a possibility that they might use my article in a future issue.

I received the newest Life Prints in the mail a couple days ago, and I was thrilled to see that they had used the piece I’d written.  Yeah!!!  (Of course, there was a little editing.)  They have posted some of the older issues to their website, but last two are not there yet.  I’m hoping they will get caught up soon, and I can give you a direct link to the article.  You can click here to see past issues.

I was so excited!  Also, Autumn’s counselor sent me an email yesterday.  Here’s some of what she said:

Your article has been a HUGE success!  I have gotten several comments from several foster parents about how your story helps them to have hope.  I am even using it with NON ABCH parents in theraplay when they are losing hope. 

They titled the article “Our Daughter, His Love,” and it’s in the July & August 2011 publication.

Janel