Happy 5th Birthday, Josh!

Well, I've given up on blogging.  There have simply not been enough hours in my day.  My husband has been travelling about 75% of the time since April.  Keeping up with three kids and a house has done me in!  :)

But today is Josh's birthday and we are due for an update!  He is so excited to be 5!  He loves calendars and we keep a large one at home to help him know when things will happen.  He is elated the first day of a new month and I get him out of bed by telling him we get to turn the calendar.  November 17th has taken a long time to get here for Josh and today, we celebrate him!

Josh has continued to make tremendous progress.  We tried a new speech-based preschool with a lot of visual cues during the summer, 2 days per week and he continued his ABA therapy 3 days per week.  The speech preschool has been amazing for Josh!  I never imagined that he would flourish with the use of pictures because he was verbal.  However, I am wrong.  His conversation and language skills have taken off.  His first week there, he was able to tell me what he did at school and that was a first!  So, what we planned to be a summer thing turned out to be great and we have continued that into the fall and started his individual speech therapy there as well.  They have been amazing at helping Josh to regulate his emotions and use tools to handle things he does not like and changes in his routine.  They have taught him so much on taking turns, playing games, singing songs and are laying an awesome groundwork for navigating social complexities.

Startng in September, we enrolled Josh in a regular preschool at a local church the other 3 days per week.  With the help of his speech therapist, we had a local speech college student be his aide.  He has done wonderfully and we have phased the aide out.  I have volunteered at some of the school functions and leave in tears of joy.  The other parents don't know Josh's past.  I love that when I meet other parents they tell me that they hear about Josh all the time and love him.  HE HAS FRIENDS!!!!  My heart is so warmed that he has been welcomed with love by his teachers, made friends and the other parents know him in a positive way.  God sent us amazing teachers that were just made to love and teach him.  I feared so much with him re-entering the "typical" world, mostly the idea of him being rejected.  My heart would have been broken.  Thankfully, due to the grace of God, countless people He placed in our lives, and Joshua's hard work, I know we are going to be okay.  There is still a road ahead of us, but it's a lot less scary than we were told and imagined three years ago.

We've made changes with Josh's primary medical doctor as well as with his diet.  With Danny travelling so much, I had to just give up on our modified SCD diet.  I couldn't peel, boil, puree and whatever other crazy stuff I did for 1 1/2 years any more!  I first got Josh eating all his foods without pureeing them, then some fresh fruits, more fruits and veggies, then re-introduced grains.  Being able to have some packaged foods is heavenly!  We are still very vegetable and fruit intensive, but being able to have a bowl of puffed millet or rice for breakfast with berries and milk is just a joy.  It's the small things... :)

On the medical side, the biggest gain we have had came after his doctor tested his cortisol levels.  Cortisol is the hormone your body makes when you are under stress. It is your fight-or-flight hormone and gives moms the super power to lift a car off of their child, or one to fight off an attacker.  I described Josh as being chemically off.  He had odd sleep patterns, including passing out on the kitchen floor and we could not wake him.  His meltdowns were so intense and very upsetting, but when he was done, it was like he had a chemical release and was reset again.  Based on our descriptions, we tested Josh's cortisol levels by collecting his saliva 4 times in a day.  It came back 10 times the normal level!!!  We started some homeopathic remedies to help calm his adrenal system and support stress.  Wow!   This has been the biggest leap since chelation!  Josh is a much calmer child.  It has been months since we have had 30-minute meltdowns, headbanging, door slamming, wall kicking, etc.  Those were the most upsetting to me.  I couldn't calm my own child and couldn't keep him from hurting himself.  He also rarely slept through the night.  Since starting this remedy in September, Josh is sleeping much better.  Usually when he wakes now, it is because he can't get his blanket back on.  We have the Teach Me clock that turns green when it's okay to wake up and most nights, he is in his bed until it turns green, then he comes to my bed to cuddle with me.  Sleep depravation has been the hardest thing for me to handle, so I am thankful Josh is sleeping better.  Now, we are dealing with Kate liking to wake up at night, but I know that is just a matter of time and should be relatively short.  :)

We are functional as a family again.  We can go to church without being mortified (aside from Kate being a typical two-year-old, but we'll get through that).  We went on vacation this summer and we all enjoyed it!  Josh participates in our family activites.  He was Buzz Lightyear for Halloween and fully participated in a carnival at Kate's school as well as trick-or-treating.  We can talk about Thanksgiving and Christmas and concepts he never used to "get."  He says the sweetest prayers, including asking God for his tummy to not hurt anymore.  We celebrated his birthday with friends last weekend and successfully opened presents and got through the entire party (including it ending) without any behavioral issues.  We are so blessed!  I have met so many amazing families in the autism community.  Not all have the same outcome we have had, so I take absolutely nothing for granted.  Josh has made us better people.  Our priorites are different than they used to be.  We are thankful for so many things that we took for granted before as parents, that are now little miracles.

I hope to be able to blog more often.  I enjoy it and love sharing about my kids, but it will still have be secondary to caring for my kids and keeping my sanity. :)

Here's a short clip of Josh and Kate having "smoovies" as Kate says it.  They are precious!

Thank you all for your prayers and support!
Happy Birthday to Josh!

Conversations with Josh

Josh likes to practice his conversations while going to the bathroom. He is very chatty, asks me questions (over and over and over again) and wants me to ask him back so he can answer too.  Here's his latest:

Photo and video editing at www.OneTrueMedia.com

 
I knew this "asking for" conversation had to come from somewhere, so I went through the latest Caillou episodes he's been watching on the iPod.  We have a match!

Taking a turn onto a new path

We are taking a turn on our path. Josh has had leg rashes for YEARS! It's different than eczema. It starts under the skin, sometimes making some large circular patches that are raised, sometimes like hives, sometimes raised and red. It is most bothersome to him at night and at its worst, he seems to just itch from head to toe. It makes me very sad to see him miserable, especially when it gets to be for hours in the middle of the night.

I have been chasing the cause of this. The first thought is always allergies and when we figured out all his food allergies a few years ago, the eczema issues he had cleared up. Most medical professionals we work with say it is an immune response. I have logged everything in his life trying to find the cause, tried allergy medications, pants and lotion when he goes outside, nightly baths, we keep his food on a rotation schedule with strict monitoring of new food introductions. One of the people we work with for him suggested we take the dog out of the house for a month, clean it top to bottom and see if that was the culprit. The skin on his face is beautifully smooth, he doesn't have itchy eyes, sneezing, or a clear runny nose. No improvement on several months of Zyrtec last year.

All that to say, I am convinced that his skin issues occur when his gut is out of balance: yeast or dysbiotic bacteria. Yeast in his digestive system was the first big battle we fought and when we changed his diet protocol January of last year, he cleared up after several weeks and started sleeping through the night. In June of last year, it came back along with the night waking. Let me repeat, he has NOT slept all night since last June!!! His stool labs have been showing dysbiotic bacteria. We have treated with targeted antibiotics, he clears up, gets in a MUCH better mood, less OCD, his skin clears and sleep improves. Once we're off the medications, it all comes back again and seems worse than before. We had tried some of the natural remedies with the antibiotics and continued afterward, like caprylic acid and grapefruit seed extract but they were not strong enough.

I decided this isn't working. There has to be another way to treat bacteria. I think probiotics are one key. With the SCD diet protocol we were using, he was limited to two probiotics (l. acidophilis and s. boulardi and he didn't tolerate the s. boulardi), so we gave him l. acidophilis for 8 weeks on and 8 weeks off. His labs showed NO presence of it in his gut, so all we have him was just being beaten by the bad. I talked with his nutritionist and she agreed for us to move him off of this diet protocol from a probiotic perspective. We have started a broad-spectrum probiotic to help re-build the good bacteria in his gut. Second, I have read a lot about Culturelle, which is a high-potency lactobacillus GG that targets clostridia. I added that in as well. I ran out of it last week and went two days without - definite difference almost immediately!!!

Third, I took Josh to the local naturopath. He is the first person I have worked with for Josh who looked at his legs and said this was likely a gut imbalance! He have us homeopathic remedies to target bacteria, viruses and parasites in his digestive tract in addition to a remedy to help repair his liver which is weak. After we get these issues under control, we'll work on some other systems in his body that are weak. The naturopath also went through all the supplements we give Josh and didn't see issues with any of them, as most are vitamins and minerals to help with his deficiencies.

Whenever clearing yeast or bacteria, we see bad before the good. 3 days into it, Josh started bedwetting which is exactly what happened when we changed his diet for yeast last year. It is UNBELIEVABLE how much can come out of him! We took him to the bathroom right before bed, he wet at midnight AND went a ton on the potty and wet again at 4 AM. Similar story for about three nights. His legs are starting to clear up and his itching is improving. Some obsessions are disappearing (changing shirts 10 times a day, changing the time on clocks, CDs), but his obsession with fans is still around and driving me nuts at times.

I am optimistic! This is worth a try and I am hoping this path leads helps us to leap to the next level with Josh. When I bargain with God, I tell him I can handle him being different and having challenges, but I cannot handle him being miserable and extremely angry. I link that to his gut and I pray we can figure this piece of the puzzle out for him.

So I'm a bad blogger

When I started my blog, I had visions of weekly updates and my mind constantly flowed with blog ideas.  It's the story of my life - not what I planned.  Anyway, we have lots of changes and updates to share, including more realistic hopes of blogging more regularly (now that stomach bugs, viruses, hospital trips and unplanned craziness are hopefully at bay for awhile).

I last blogged about challenges with bacteria in Josh's gut.  Not much change there.  Our January stool analysis showed an overgrowth of dysbiotic (bad) bacteria called proteus mirabilis and klebsiella oxytoca.  They were both at 4+ levels, which is the highest.  The lab also tests for antibiotics the bacteria is sensitive to.  We put Josh on a round of Bactrim to wipe them out.  It sure rocked his immune system.  He had an increase in hives, eczema and asthma.  Once that cleared, he was in pretty good shape.  We then followed up with a round of Flagyl to address the continuing clostridia levels that were high.  Once again, he did really well on Flagyl.  I know that the bacteria we have been battling for the last 9 months are behind his sleep issues, itching and under-skin rashes he gets.  When we put him on the targeted antibiotics, he is amazing and his anger, tanrums and sleep issues greatly improve.  However, I don't want to continue this cycle of testing for bacteria, then doing antibiotics for that.

His labs also showed basically NO beneficial bacteria, even the ones that we have been supplementing with in probiotics, which means the bad guys are winning.  Also, with Josh being on an SCD (specific carbohydrate diet) protocol, we were severely limited on which probiotics we were allowed to give him.  I met with his nutritionist about getting him off of SCD protocol in terms of probiotics.  She agreed.  We have added in a broad-spectrum probiotic.  I also have researched on probiotics for clostridia and started him on Culturelle as well to help keep clostridia at bay naturally.  To help kill off remaining dysbiotic bacteria, we are rotating grapefruit seed extract and caprylic acid.  All the natural remedies are fairly new in our rotation and I see signs of die offs, but we're not in the clear yet.  I fear the bad guys are still winning and am in desperate need of sleep!

My next step is to find a local naturopath.  I think we need to broaden our approach to include homeopathy.  I have started some on myself first to address health issues I've been battling which I'll blog about another time.  I was able to clear parasites and viruses from my body via homeopathy and hope we can tackle bacteria for Josh that way rather than going the antibiotic route again.

Josh is continuing to do well in therapy.  He is starting to write some letters.  Some are very challenging because his hand strength and grip are still very weak.  He is doing great using scissors and his pencil grip is improving each week.  He is enjoying his pre-school and having him home with me and Kate on Mondays and Thursdays has been fun.  He and Kate are very close in social age and watching them play together is a joy.  It is so nice to hear them play a room away and know they are fine and that he'll no longer hurt her.  I don't have to hover so much.  :)  They do the cutest things and I am on a mission to catch some videos of them playing.

Kate is now in daycare two days a week.  She was getting a little bored with me at home and I was feeling challenged trying to get dr. appointments, errands, cleaning and cooking in.  I went back to the daycare Emma and Josh went to and of course, they welcomed her with open arms.  The teacher taking care of her was Emma's first and Josh's last teacher there.  She is wonderful and we love having her care for another one of our children. 

So, with a little better routine going now, I plan on weekly blog updates.  Life happens and mine is crazy, so it's just my plan.  No promises.  :)

Pre-school is here

Josh has officially started to transition out of full-time ABA therapy.  He has been attending his therapy center for 1 1/2 years now and was there 5 days per week for all of 2010.  He has made tremendous progress, becoming one of the most social children there!  It is a good and a bad thing.  His progress is great, but he was starting to turn more to adults because a lot of the children there were not responding to his requests.  So, he gravitated to the adults who responded to him.

We discussed a transition plan with his therapy team for him to attend a regular pre-school 2 days each week and remain in ABA the other three.  After a lot of back and forth, I decided to put Josh in the pre-school program in our school district.  Basically, the services you get depend on the district you are in and the elementary school you route to.  The one in our neighborhood does not have a pre-school program, so we go to a nearby school.  They have a pre-k program for typically-developing children who qualify and they include the special education pre-k kids in the same classroom.  This seemed a good fit - Josh would be working with teachers who want him in their class (I had such fear of us getting rejected in many pre-schools!), he would be included in a regular classroom, but have the special needs support he needs.

He started a few weeks ago and I was so nervous that first day!!!  The special ed teacher was out sick and I thought all the prep work I had done was out the window when we were greeted by a substitute teacher.  Of course, he did fine and has been excited to return there.  He has done well going back and forth between his ABA school and new pre-school.  Slowly, he's starting to tell me tidbits about his day.

I am hoping to find somewhere Josh can attend in the summer 3 days per week, so we can go down to 2 days of ABA, then plan for him to be in pre-school 5 days per week next school year.  Next school year will tell us a lot and help us to plan for whether he can be in a regular kindergarten class or not.

We are still battling something with Josh's gut.  During the fall, he had high levels of clostridia, a bacteria.  We did a few rounds of Flagyl with amazing results in his behavior, skin irritation and night itching.  Unfortunately, there is still something else going on.  He has not slept through the night consistently since last June.  Needless to say, we are tired.  Sometimes, he wakes up aggitated for hours at a time.  Other times, he is itching all over his body, like there is no tomorrow.  I have logged everything we do to see if it could be tied to a food, a supplement, anything, but nothing consistent.

We sent off another stool sample to the lab which just came back.  There are new bacteria we haven't dealt with before.  Clostridia is still there, but in a more normal range.  No signs of yeast, which was our main battle the first year of treating Josh.  I have an appointment with his doctor at Thoughtful House tomorrow.  Once I learn more and the plan of action, I'll post about the new bacteria.  I'm hoping knocking these bacteria out will bring back night-time peace and remove the major tantrums that come and go.  That will make me a much happier person.  :)

Happy 8th Birthday, Emma!

A slight delay in posting, like a month, but who is surprised?  Had some pictures to find from earlier birthdays, and that is a side effect of having 2 kids with birthdays in the middle of the holidays! 

It's hard to believe it has been 8 years since I became a mother!  I had no idea how much my life would change.  I thought I knew what the word "love" meant, then God entrusted me to care for one of His angels.  I remember looking into Emma's eyes for the first time and I knew she came straight from God.  He picked her to be our first-born, to be the one to challenge us, to be the best big sister for Josh and Kate, to inspire us to be better people. 

8 seems like such a big age!  Emma is her own person.  She has her own style, her own personality, her own desires, her own way of doing things.  I am so proud of her!  She is the best big sister I could ever ask for. She seeks to do good and stand up for what is right.  She is smart and has a great sense of humor.  She loves to read books, do art (especially painting), watch football with her daddy, wrestle with her brother and read to her sister.  I knew I loved her from the minute I knew she existed, but I didn't know how much I would love being her mom!

Happy Birthday, Emma!  We love you more than you'll ever know!
Now, a trip down memory lane...

My, how the years have flown by...

An empty room

I cleared Josh's room of all toys, his train table, books and lighter furniture.  His tantrums have been escalating to a new level.  It's like he is in a mood to have a fit and every attempt to avoid the trigger is a moot point, because he needs to let some monster out of him.  He physically goes crazy, throwing himself back to the ground, flailing around from side to side.  He kicks, throws toys or anything he can grab.  If I go to him, I get kicked, hit, scratched, bitten.  He has gotten to big for me to continue holding him through it without getting hurt.  He has had some of these level of tantrums at school as well.  In discussing with his lead therapist, we agree it's best to isolate him until he can calm himself down.  He calms down quicker and that avoids any of us providing any reinforcement for his behaviors.

I have been bringing him to his room more often to calm down, but this new level of tantruming has been disheartening to say the least.  His screaming and kicking the door and walls has escalated to throwing around anything he can grab.  So, I cleared out his room.  This has been the most emotional day I have had with him in a long time.  I always try to keep hopeful, but my heart broke as I remembered all the hopes and dreams I had for my son when I decorated his room.  Danny and I painted a blue sky with clouds and airplane wallies.  Our families contributed different airplanes to go around the room.  We filled his bookshelf and hoped to share many books with him. 

So, I packed up his trains and emptied the train table to go the attic.  I bought a doorknob with a lock for his closet door to keep him out of there.  I moved his bookshelf to Kate's room.  He's left with a bed, dresser and nightstand with no airplanes or pictures on top of them.  I pray these fits will end before the room goes down to only a matress.  This seemed so symbolic.  I feel like I can see all my dreams I have been ignoring go away with each thing I packed up.  As much as this hurts, I still have to have hope.  We'll see what happens next, what we can put back into his room to replace our old dreams with our new ones.

I quit blogging, quit Facebook, quit e-mailing, quit calling, quit attempting play groups with Kate the last 3-4 months.  I have not been in a good place emotionally, but do have a good counselor helping me put my life back together in a new way.  I can't begin to explain all that has been happening, but I am attempting to get our updates out again.  I know many friends and family don't feel comfortable asking about how things are going with Josh.  I know it's awkward and difficult to relate, but I appreciate all who have prayed for us, stood by us and supported us in the way you know how.  When you don't know what to say or how to help, please just say a little prayer that God will continue to give us the grace to serve Him through our marriage and in raising our children.

So, with this empty room, we decorated with love and hope for our son, I give it to God to help us keep hope alive, build new dreams and love in a way we never knew we could.