Finally Someone Saw It

Our older son's legs have turned in for a long time. Actually, let me correct that. Since he regressed his left leg slowly began to turn inward. His right leg was fine. He can now turn his left foot completely towards the back with no trouble and no pain. Recently his right leg began an inward turn. I have asked countless doctors about it. I have talked to specialists. Everyone sees it, no one knows what it is. Muscle guys say bone, bone guys say muscle. One doctor blew us off completely and said, "it's just Autism". We were given expensive custom inserts, had muscles taped by therapists, and more. Sigh.

Finally our ortho doctor did thorough testing (the first one to do so) and found out, without a doubt, it's not bone related. He said it was muscular/neuromuscular. I went to the top neuromuscular doctors (supposedly) and she is the one who told us, "it's just Autism".

I had all but given up. He has pain related to this, he trips on his own foot, it makes him clumsy, and no one seemed to care enough to help.

I decided to throw in the towel after one last call for help. I emailed our DAN doctor about the issue. hoping he could refer me to someone. He didn't refer me. He told us to bring our son in to see him. We did.

He poked.

He mashed.

He bent.

He twisted.

He looked.

He felt.

He sighed and said there was nothing biomechanically wrong with our son (meaning nothing a chiropractor could help), there was nothing wrong with his bones (we had hear that from a pretty reliable source). He said this was organic and it was definitely in his muscles. It was all tied to his issues we knew about (mito, deficiencies, etc). This means we were some what helping with the protocol we were on, but not nearly enough to help because those items could never correct the damage. They could only support and heal the CAUSE.

Our son has loose muscles on one side of his body, very tight muscles on the other, and it's twisting and tilting his pelvis.

He decided to work with PNF (Propioceptive Neuromuscular Facilitation). Normally he does this in-office but we live quite far from him so regular multiple visits each week would be impossible. Instead, he's teaching us the exercises, giving us a rigorous schedule, and will see us every 3 weeks to monitor our son's progress. He said words I never hear him say. He told me he thought we could reverse this. It won't be fast or easy. We have a lot of work ahead of us to help him stabilize, move things like they should be, and then make them symmetrical in usage. We are working a few hours a week to try and overcome what the body has been doing for years and will be doing 24/7 as we do the exercises.

I appreciate that we have a doctor who finally really looked at our child, saw his issues, and helped set up a plan to remedy the situation.

My take away? Never give up!

Getting Real

When we read people's stories online, they are heavily edited, carefully chosen pictures that they want to share. We rarely see the day they eat cookie dough on the sofa while not getting out of their pajamas. We see adorable little children lined up in a row, doing their school work with no whining, while their tousled hair (that took 30 minutes to get that bed head thrown up in a quick bun look) looks adorable as they mix up homemade cookies.

Yeah, so not me! Let me describe my day.

I wake up at 3:00am to kind of nudge my husband to make sure he's awake to get ready for work. I wake up at 3:09am and repeat. I wake up at 3:15am and repeat. I am often then awake while he's still groggy in bed thinking about getting up. It's a good thing he's so cute and I love him so much.

• I get up after laying there staring at the ceiling and traipse into the living room. I grab my pillow as I leave my bedroom and lay on the sofa. I put a DVD in that I don't care if the kids see in case I fall asleep and they walk in on the end of it. This means something like Leave it to Beaver or The Andy Griffith Show or the like. 

• I watch it a while and go back to sleep on the sofa after convincing our cat that he doesn't want to play with me. 

• 5am or so comes and I am awake for good. No, I am not just an awesome, well scheduled, and put-together Mom. Nope, for some ridiculous reason I am a morning person. No matter what I am up early. I don't want to be. I am not singing with the morning birds happy. I am simply awake. 
• 7am or so and my youngest is up. He comes into the living room, sits next to me, leans on me, sighs, and then says, "canIwatchamovieIamhungrycanyoufeedme". It happens every morning without fail. 
• I slowly get up, grab him some cereal or toast with "chocolate milk" (formula mixed with almond milk because he doesn't eat well) and sit back down with him letting him eat on our card table or desk which is in the living room while he watches his kids DVD. I give him his morning supplements his doctor wants him to have, and hand him pear juice to drink with it.
• I hang out and wait for our older son to wake up. Since he was up until midnight due to his sleep issues tied to his Autism, he won't get up until about 9 - 9:30am.
• He wakes up, I kiss his sweet sleepy head (because he has the biggest bed head I have ever seen with hair going everywhere and a sleepy smile every single morning), and snuggle with him a bit. 
• He doesn't ask to eat. He never asks to eat. If I didn't make him eat I think he wouldn't eat all day. So, I tell him it's time to eat and give him his breakfast choices. He likes cereal, toast, or eggs most mornings. 
• I let him sit at the card table as well because brother did and, well, you know how that is. 
• We finally finish with his breakfast between 9:30 - 10am.
• I mix his supplements (those that can be mixed) and get them in syringes. I put them into his g port of his GJ tube and change his tubie pad. 
• In this time I have grabbed something with caffeine and added in my Before the Flow or After the Flow (depending on the time of month), my zinc, and take my allergy pill after forcing myself to eat a little something. I am not a breakfast person and could skip it everyday. But, since it's important, I take my allergy meds in the morning knowing it will force me to eat or else I will be nauseated. 
• I get dressed, the boys get dressed if we get dressed that day. I almost always do. I feel more productive with clothes on vs. pajamas, don't know why. We then do our typical personal care such as brushing our teeth and hair. I don't put on make up. True confession, I very, very rarely wear make up. I don't like the feeling of it and yes, I have tried it all. It's a sensory thing and my husband loves me bare faced, so it's a win-win. I also rarely do much with my hair. I brush it, put it in a pony tail about 40% of the time, and that's it. I am a very low maintenance person. 
• The boys play, run around, and have fun in between all of these activities.
• Yeah, well, it's now 11:00am and it's time to contemplate lunch. 
• I normally make a quick lunch. It might be left overs from supper the night before, a sandwich, hot dog, pasta, etc. 
• I make their lunch supplements and hand my younger son his (he swallows his) and mix them up for my older son to put in his g-tube.
• Depending on how well our older son has eaten for the day, I start his continuous feed now and it will last him the rest of the day and into the night. If he's done awesome (which is rare) I wait until supper to start it.
• The boys clean up their places and it's time for quiet time. 
• I tell the boys this is a good thing for their bodies to rest for an hour. They don't have to sleep, just participate in a quiet activity. Mommy really just wants to have a bit of down time. 
• After quiet time we have a snack and start school. I used to do school in the morning but the kids have told me they hate doing it that early and prefer the afternoon. I am fine with that since I do better in the afternoon, too. I have noticed a big difference in their attitudes towards school work and their attention when we work in the afternoon. 
• School ends and we do some chores. The kids pick up anything in the livingroom that is theirs, clean up their rooms (if I remember to ask them - just keeping it real), feed their pets, and then do other chores depending on what needs to be done. 
• It's soon time to think about supper. I make supper, we eat without my husband 4 out of the 7 nights in a week due to his work schedule. I, again, hand supplements to our younger son and mix them for our older son to go in his g-tube. 
• If our son did great earlier with his oral intake, I start his continuous feed now. 
• Both kids run off to play for a while. 
• Every other night the boys get showers/baths (depending on which one they want). 
• We have prayer time, often talk about the day, and sometimes read a book or just snuggle for a while. 
• I kiss the boys, give them big hugs, tell them how much they are loved, and send them to bed. 
• 10 minutes later one of them is out wanting something (water, another hug, to tell me a life altering issue that just came to them once the lights went out, etc). I listen/hug/get them water and send them back to bed. 
• Younger son stays in his bed until he's asleep. He often reads a book until he goes to sleep. 
• Older son stims. He stims for the next 3 - 4 hours until he falls asleep around midnight. 
• I sit on the sofa, chat with hubby, maybe pop in a DVD, go over what needs to be done the next day, and settle in for a long night as I can't go to bed until our older son is asleep because he roams. He never leaves the home, he just roams in our home. I need to be up to help him with whatever he needs. There is always a need in his mind. It's never aimless. 
• I head to bed once the quiet happens in his room. 

Days are busy. I am OK with that. Sure, I would love quiet days where we did nothing but read books, take long walks in the woods, and play board games. It just really doesn't happen. It's our normal. 

No, I am not a saint. There are days that I stand at the counter in the kitchen wondering if it would be horrible if I just skipped one day's worth of supplements for them so I didn't have to bother with it. I don't, but it is tiring. There are days I dream of hubby bringing home a large pizza with extra pepperoni and double cheese. I make a gluten free spaghetti instead, but I dream. There are days I pretend I am sleeping when hubby is home hoping the boys will go to his side of the bed. They don't, but I try. There are days when it is lunch time and it hits me that I am still in my jammies. I change clothes, but it sure did feel good. We all have weaknesses. I don't do these things with some halo on. I don't want to wash dishes most days (and some days I don't). I don't want to do laundry, or make another pitcher of formula, or anything else medical. 

This is not who I ever planned to be. I am a techie. Computers and technology have known issues with known causes and you fix them in known or not so known ways. You have a beginning and an end to an issue with any system. You can walk away from the office at the end of the day and know you did a good job and it won't be there tomorrow. I was a manager and loved working with people helping them succeed at their jobs. I was well liked by my employees and my CFO and COO gave me lots of praise and kudos. I got raises and more responsibilities, even responsibilities far above my pay grade. 

But you know, the perks of this job are so much better. When my younger son smiles and tells me we have the best talks, I don't miss that job. When my older son smiles at me at all, I don't miss those raises. When my sons tell me I am the best teacher in the world, those responsibilities I held so dear mean nothing. It's hard. It's tiring. It's mentally exhausting. But it's the best job I have ever had. And THAT is getting real. 

When Life Gets Hard

"I feel like I am hitting my head against a brick wall". I have heard it many times. I have said it many times. In the Autism journey you can feel like you have not only hit your head into that proverbial wall, but like you have been knocked out more than once.

My advice to you is stop. Stop banging your head for just one minute.

Pull your head away from the wall.

Open your eyes.

Look to your left. Look to your right.

Every wall has a door. Find that door and open it. There's no reason to continue hitting your head when you can turn a door knob and leave that entire room.

We have done this many times. It wasn't until I stopped banging that I found the door to open. It wasn't until I stopped the senseless acts that were causing me so much frustration that I could find the door. It wasn't until I gave it to God through prayer that He gave me enough to strength to stand up and find an exit.

I spoke to my husband who knew someone who was just banging away and banging hard. I told him to tell them this advice. Just stop the ramming and start looking for that door. It's there, find it and see what's on the other side.

Recipe - Lemonade

Yes, I have another recipe to share. Since we now use Bountiful Baskets we are getting some produce I sometimes don't think about buying, such as lemons.

Lemonade is delicious, a wonderful treat, a good way to get off of sodas, and super simple to make. Below are two quick methods to make delicious lemonade with three ingredients.

Lemonade - by hand

Ingredients

• 3-5 lemons depending on size in order to get 1 Cup lemon juice
• 5 Cups water, divided
• 1 Cup sugar

Directions

1. Put 1 Cup water and 1 Cup sugar into a small pot and put on medium high - high heat to bring to a boil. (making simple syrup)
2. While that is heating up, roll lemons on a hard surface making sure to press down a bit to release the juice from the fruit. 
3. Cut each lemon in half. Only do one or two at a time until you know how many lemons you will need. You don't want to waste them. 
4. Squeeze each lemon half on a manual juicer until all juice is out the lemon. (see picture below)
5. Pour lemon juice into pitcher big enough to hold 6 1/2 Cups (approximately) of liquid.
6. Stir water and sugar until all sugar is dissolved. 
7. Pour into pitcher and stir to mix. 
8. Serve over ice or put in the refrigerator to chill before serving. 

I have one similar to this. 

Lemonade - by Vitamix

Ingredients

• 3-5 lemons depending on size in order to get 1 Cup lemon juice
• 5 Cups water, divided
• 1 Cup sugar

Directions

1. Put 1 Cup water and 1 Cup sugar into a small pot and put on medium high - high heat to bring to a boil. (making simple syrup)
2. While that is heating up, peel the lemons and cut each one in half. I would start with 2 large lemons or 3 small ones and add to it once you see how much juice you will get. 
3. Place the peeled lemon pieces into a Vitamix blender (or other high quality blender that can handle the load) and blend on high for 40 seconds (approximately) until you have a thick, creamy colored, juice.
4. Pour lemon juice into pitcher big enough to hold 6 1/2 Cups (approximately) of liquid.
5. Stir water and sugar until all sugar is dissolved. 
6. Pour into pitcher and stir to mix. 
7. Serve over ice or put in the refrigerator to chill before serving. 

Recipe - Garlic Watercress Eggs

We purchase organic produce from Bountiful Baskets each week. I like that they have organic and non-organic baskets because my mother-in-law doesn't buy organic and this gives her the chance to get more veggies and fruit into her diet. If it's in her home, she won't let it go to waste. So, she will eat it. Never thought I would use that little trait to help her be healthier, but whatever it takes.

In my box last week I received watercress. First of all, I had no clue what it was. It was the only thing not labeled in my box. Second, the only thing I knew about watercress was those little sandwiches everyone seems to make fun of and no one I know has actually ever eaten.

I started with Google and discovered that it was, indeed, watercress. I had just guessed.

Good guess.

Then I asked my husband what we do with watercress. His response? Don't they make sandwiches out of it? OK, so that's really the only thing most people know about it. I am feeling much better.

I then went on the hunt for recipes. Obviously watercress and butter sandwiches wasn't going to cut it in my home. That's when I discovered a secret that only I didn't seem to know. Watercress is wild about eggs.

I decided to try some recipes this weekend and have come up with a favorite in our home. Check it out. I never would have thought I would like this, but figured I had nothing but a few eggs and some watercress to lose, so why not.

Our favorite recipe is below with a tweak that we discovered the second time we had them.

Garlic Watercress Eggs

• 3 - 4 eggs
• 1 clove garlic, diced very small, nearly minced
• 1 small handful watercress
• 1 Tbsp (approx) favorite oil for sauteing
• Salt and pepper to taste (optional)

Directions:

1. Put skillet over medium heat and add oil. Make sure to coat the bottom of the pan. 
2. Add garlic and begin saute. 
3. Just before done (it will not take long, 30 seconds or so) add in watercress and saute until just turns limp (very fast).
4. Remove from pan and set aside
5. Whisk eggs until they are a good scramble. They will pour off of a fork when they are very well combined. 
6. Add to pan. Add salt and pepper to taste. Cook until done.
7. Put the watercress and garlic you just sauteed back into the eggs and stir until combined. 
8. Serve warm

Variation:

• Instead of using oil, make bacon before you do anything else. 
• Leave bacon grease in pan and follow steps 2 - 6 above. 
• When adding in watercress and garlic, chop bacon and add it as well so that you now have bacon garlic watercress eggs. 
• Drool! Oops, sorry, I mean serve warm. This would be incredible on a tortilla with a touch of cheese, salsa, and other toppings. 

Happy Hanukkah

Tonight, at sundown, begins the beautiful Hanukkah season.

Happy Hanukkah. "Then spake Jesus again unto them, saying, I am the light of the world: he that followeth me shall not walk in darkness, but shall have the light of life." John 8:12

We celebrate not because we are waiting on Messiah to arrive, but because we know He has. On this day our family... wants to wish you all the blessings of Hanukkah and we pray our Lord, Jesus Christ, will bless you during this season.

Over 2,000 years ago God blessed His people with a miracle that lasted 8 days. Tonight, and for 7 nights afterwards, we remember that miracle and worship the one who created it.

After we light the Shamash (the candle that lights all others, it means helper), and hold it with the single flame, we will say three blessings before lighting the first Hanukkah candle. This is the first of the three: "Barukh attah Adonai. Blessed art thou, Lord our God, King of the universe, who has given us holidays, customs, and seasons for gladness, for the glory of the Lord our Messiah, the light of the world".

Happy Hanukkah.

Tubie Tips - Backpacks

In the tubie world there are all sorts of backpacks so you can be on the move with a tube feed. We have tried a few of them, OK, quite a few of them, and none have really fit the bill. We tried the packs made specifically for tube feedings such as the Kangaroo Joey backpack line.

Out of all the packs made specifically for feeding tubes, it was my favorite. We use an MOOG Infinity pump, but it works very well in this line of packs.

We also tried so many traditional backpacks tweaking them where needed. Most of the time this meant cutting a hole for the tubing that connects to his extension to exit the bag. Eh, they were alright. Nothing to write home about.

Then, one day, we were at Academy picking up a few things when we walked past the hiking area. They had hydration packs galore and it hit me. This was the perfect backpack for tube feeding. There are a lot of choices out there. But most are the same concept. There's a hydration bag inside (a big feeding tube bag looking thing) that hangs and has a long hose attached that goes out a pre-cut hole, usually it then goes down the pack strap, and comes out so you can drink when you want to. I looked at my options and we chose one by BCG.

I wish I had a big long reason to give you that sounds like I really did my research and had a broad knowledge base on hydration packs. Honestly, it was the least expensive. At $19.99, it was far less than the next lowest priced bag which was a CamelBack at $49.99. I know CamelBak is a much higher quality bag, and I am sure it's worth the price. But this is a very well constructed bag and it's for a kid who isn't out running marathons, hiking for miles at a time, or riding a bike in long distance races. Not to mention, it came in a few cool colors.

Our son chose the orange one you see above. He's a sucker for a bright color.

Inside you will see a tab that has Velcro closure that holds the inner hydration bag. I simply took out the bag and hang our unit there instead. Boom, that's it. The pump fits perfectly in the bottom under the bag as that main pocket is the entire length of the backpack. My hand slips in easily so I can push the run, prime, power, whatever button.

I have it cinched up to the smallest size for my son who weighs about 65lbs. The handle at the top serves to let me hang it off of an IV pole, a hook in our SUV, or anywhere else I need it to hang. There are two pockets on it (one zip and one open) so I can store small things like rolls of tape, tubing caps, extra tubie pads, etc.

My favorite parts of this pack are:

• it's very slim, hugs the body, and isn't bulky. It's the nicest one we have used so far. 
• since it's a hydration pack, there is an opening in the top for tubing to go out and down the straps. This puts the pump tubing in the EXACT spot it needs to be to hook to the extension. 

I think we have finally settled on a set up for when he's on the move. We use it in the house so he can get up and go where he wants and when we are out and about and he needs a feed. 

Sleep - It's a Good Thing

From here

Sleep, it's a huge issue in our home. Kids don't get it so neither do the parents. I remember hearing parents gripe about a kid not sleeping well. You hear stories of "one more glass of water", "a few more pages, Daddy" and the like and you smile. You laugh inside knowing it's a part of growing up.

Yeah, that's not what I mean at all.

Picture a child so anxious about night time that he will beg, plead, and beg more to not sleep alone. Imagine a child so revved up that he runs for hours in his room until he finally slows down at 1am, napping for an hour or two (and I do mean light sleep), waking up, stimming some more, going back to sleep lightly for two hours, and continuing like this until one time he wakes up, sees sunlight outside, and is out of his room at 6am.

I mean sleep issues!

There are ways to help these issues. The problem is, many people want a one size fits all approach. I honestly have people ask me all the time, "what are you using for him and tell me the exact dose".

Here's the issue with that. 1) How big is your child compared to mine? If mine is 65lbs and your child is 32, that's a huge difference in weight and what my child can take might harm your child. 2) What are your child's reasons for not sleeping? What is causing my child to stay awake might not be what causes your child not to sleep. Did you know the reason my older son doesn't sleep is very different than why our younger son doesn't sleep? Same result, different mechanisms in the body.

Instead, I tell the person to call our doctor, or give them the names of other similar doctors who can help them figure out what's going on in their little one's body.

Having said that, this post is to also share our newest possible success in the sleep realm. Our younger son has a lot of anxiety tied to bedtime. Who am I kidding? He has a lot of anxiety tied to life in general. Our doctor has figured out a lot of the reasons why and we are starting new protocols slowly. We have only started two items and one is something we have used before but his body is deficient so he's on it again. When we start supplements, I always start one at a time. This let's me know what's working, what he might react to, and what he might be having an odd side effect with so I can tell the doctor.

Here's what we have so far:

• Massage - At least once a day, moving up to twice a day, I massage our son's back, calves, and feet. I use Ava Anderson's Dream Cream with two drops of Lavender essential oil mixed in. He loves it. He has always loved massages. If I only do it once during the day, I make sure that one time is after supper. If I do it twice (which we are moving to) then I do it in the morning after breakfast but before school and then before bedtime. I take my time and allow his muscles the time they need to really relax. I start on the shoulder area of the back so he will start to breath in the oils and that will help relax. 
• L-Glutamine - Our doctor has us giving him 2,500 mg of L-Glutamine from Klaire Labs even evening before bed. I give it to him after his massage and just before he brushes his teeth. We use the powered form and put it in some pear juice (just enough for the powder to fully dissolve as there is no taste to the supplement). 

We have other items we will be adding, but this is where we are since meeting with our doctor. Here is what we have seen so far:

• A child who is calmer and more able to move through stressful situations. 
• Monday - it took our son 2 1/2 hours to fall asleep with quite a bit of anxiety and being in his room. 
• Tuesday - it took our son 1 hour 16 minutes to fall asleep in his room with my aid and medium levels of anxiety (reading stories, singing a lot of gospel songs, praying with him, etc).
• Wednesday - it took him 40 minutes to fall asleep in our room with no anxiety. 
• Thursday - he woke up and came to me asking if tonight he could sleep in his own room with me helping him a bit with a story and song. He said he thinks he's ready to move in there now. 

Why this is big: He has always had so much anxiety with sleep that even suggesting he sleep in his room would throw him into a massive panic that was honestly fear based. For him to come to us and ask to sleep in his own room is a huge, huge step. He also takes a very long time to fall asleep, even if we lay down with him. The fastest way to get him to sleep is for us to be in there, but even that is a long journey. For him to fall asleep in 40 minutes, that's a big deal. 

Our son, who has had sleep issues since he was a week old, is starting to sleep. I pray this is his answer. God lead us to an awesome doctor who is, what I would classify as brilliant. He saw our two kids issues and knew how to help. He said what we were doing for our younger son would happen quickly and I was afraid to have hope. I am starting to let go of that fear and see the hope that is out there. 

If you are a parent and feel like giving up, or have given up, don't. There is hope. It might not happen overnight. We have been trying for sleep for 7 1/2 years. But it can happen. Pray hard, seek His face, and look for doctors who will listen and know what to do once they understand your child's issues. 

If you need a place to start in finding doctors, let me suggest the two websites below. You can find one closer to you. You might have to drive a bit, but ask about phone and Skype appointments. Many will do that for those who aren't local.

Defeat Autism Now - don't let the name fool you. They are biomed doctors and can help much, much more than Autism. 

MAPS - the newer and very up-to-date people out there. 

Stand strong, parents. You can win this war. 

*Most of the links in this post are not affiliate links. The only one that I am affiliated with is the link to Ava Anderson. I receive nothing if you click the link, only if you make a purchase. You will not pay more for the item, but I do receive commission on anything purchased. 

Random Hodgepodge

It's fitting that Joyce is having a random Hodgepodge this week considering the past few days (see my Catching Up post). So, here we go. Check out my answers and then head on over to Joyce's blog and have more bloggy fun.

1. Did you watch The Charlie Brown Christmas special Monday night? Who's your favorite Peanuts Character and why?

We didn't. I have it on DVD, so my kids are well versed in the movie. My favorite character is Linus. He reminds me of our younger son. If you knew our younger son, you would agree. His mongee (favorite blanket) is even the same color. I mean, down that our son's hair he looks and acts like Linus. (even the deep thinking)

1a. "Most psychiatrists agree that sitting in a pumpkin patch is excellent therapy for a troubled mind." - Linus

Would you agree?

I think getting outside and just being is VERY good therapy. I think a lot of issues with our health could be solved by just standing up and walking outside our front door and not coming back for quite a while. Homes are meant for shelter, not living most of your life. 

2. Describe a sound from childhood. What does this sound bring to mind?

Hmm, this one is harder. The only sound I think of is from a certain Christmas as a child. I remember laying in bed and hearing the chain in front of the fire place (do fireplaces still have those chain curtains). It was moving a lot and I thought Santa was there. I crept out of my room, tiptoed down the hall, and peeked into the living room. The only thing I saw was my younger brother looking at all of our gifts. I was so disappointed. But, only for about 20 seconds and then it hit me it was Christmas morning and we started yelling for our parents to get up so we could open our gifts. 

3. You've won a trip to a winter wonderland ... would that excite you? Which one of the following would you most want to experience (or which one would you dislike the least) - see Aurora Borealis in Norway, stay in Sweden's Ice Hotel, go dogsledding in Lapland Findland, take a winter wildlife safari in Yellowstone, or celebrate Winter Carnival in Quebec:

Wow, that's hard because all of them sound awesome. But, if I had to pick one I would choose to see the Aurora Borealis in Norway. I always wanted to see the Aurora Borealis and, hello, Norway. I mean, NORWAY!

4. Who or what keeps you humble. 

My ultimate answer is God. Without God nothing in this world would keep me humble. On a more direct level, it's my kids. Everytime I think I have it figured out with their medical issues I am side swiped and realize I wasn't quite fully right. Sigh. 

5. What part of preparing for Christmas do you like the most? Explain. 

I hope it's OK if I answer this with our Hanukkah celebration plans. We aren't doing Christmas this year. My favorite part is studying the history of Hanukkah with my kids. We spent yesterday reading about the war between the Macabees and Syrians. We talked about God's provision in our lives. We read the Bible about Christ being the light and in Revelation about us needing no sun in eternity because of Christ. 

I am also really enjoying learning the blessings for each night of Hanukkah. The first night there are three and the other nights there are 2. The extra one you do on the first night is the blessing Jewish people say on Sabbath. 

6. Gingerbread - yay or nay? Is making a gingerbread house part of your family holiday tradition?

I love the flavor of a good gingerbread cookie. However, we don't make houses because my kids are allergic to so many things in the cookies and I have never found a good recipe for a safe one. Think my kids will be permanently scarred? 

7. What's one thing you want to start, do, or complete before the calendar rolls into the new year.

I don't really have anything I want to do. I have accomplished a lot this year and am satisfied with how it's ending. If I need to say one thing, I would put that my kids would start sleeping (again, see my Catching Up post). If that were to happen this year would be double incredible. 

8. Insert your own random thought here. 

I ordered my first Bountiful Basket this week. My sister-in-law sent us pictures of her share from the last 2 weeks and the produce is beautiful. I like that I can pay and upcharge and get 100% organic produce. I also added on 20lbs of citrus (hmm, how can I save this the best way and keep it good) and a package that has everything you need to make homemade tamales (save the meat). We pick it up on Saturday. 

Here are my questions to anyone who reads this Hodgepodge:

1) How would you keep 20lbs of citrus from going bad? I mean, we will eat it, but it's 20lbs! 

2) Do you have a no fail recipe for tamales? My tamale package includes: Masa, corn husks, green chiles, jalepenos, dried red chiles, and tomatillos masa. 

Catching Up

Sorry I was gone a few days. Being Thanksgiving week, having a nasty storm, and crazy doctor appointments, and it made for me missing being here.

We traveled to my Mom's for the holidays and came home the Friday after Turkey Day in order to have a day of rest before going to my in-laws on Sunday to celebrate with them. We got a call Saturday morning that, due to the rain, the road to my sister-in-law's was flooded and there was no way we could get in and the day was canceled. Sigh.

Sunday evening we packed up and went to my Mom's again because she's very close to our sons biomedical doctor. It takes us 2 hours to get to her home and, since our appointment was at 9:30am the next day, we didn't want to get up before sunrise, drive to her home, drop off the kids, and then head to the doctor's office in time to make the appointment.

From here

The day of our appointment came and I was excited. I love our doctor. He's so kind, warm, and smart, smart, smart. I mean, he makes smart people look mildly intelligent. I went in with my notebook of test results (I always take them with me so I can refer to them as he speaks and make notes on them), a spiral, and a few pens (you never know if one might die and I take a lot of notes when he's chatting). We sat down for what would be a 2 1/2 hour long chat. I didn't realize he had blocked off so much time for us.

The Good:

• We have a whole new protocol.
• He saw our sons issues very clearly.
• He knew what to do about them. 
• He thinks he knows why our younger son won't sleep alone at night due to night time anxiety.
• He thinks he has identified our younger son's eating issue.
• He saw where our other doctor lacked in testing in order to get a full picture on our older son. 
• He saw where other doctors had made mistakes in what they thought the issues were in a few areas and got us on the right path. 

The Bad:

• Melatonin is now in the trash. A major sleep issue we were having was being caused by a side effect of Melatonin. We caused what we were fighting. I mean, we didn't know, we were told to use it, but it was not a good thing for our younger son. 
• The frustration level we had at being misdirected for so long by other doctors was high. But we let that go because it does no good to anyone. 
• We have a blood test that needs to happen for our younger son. Oh, gee, how I look forward to that... (read sarcasm)
• I have stool sample to collect from our older son, the kid who never poops. Still waiting. 
• SLEEP! We have none. Since pulling the Melatonin the kids aren't sleeping. We have something new on board, but it will take up to two weeks to see results. So I am working each night to get our younger son to sleep and just waiting out our older son. This means I am up very late (1am or so) and then getting up early because my younger son gets up early. Come on 14 days!!!

And now I am back. I am not sure how much mental clarity I have, so if my posts make no sense, just keep reading, shake your head in pity for me, and know in 14 days it will hopefully go back to normal. 

Talk soon