Courage to adapt, learning to feed my son through a tube

If you've read any of my previous posts or know me personally then it should be very clear that music plays a huge role in my life. I truly do have a song for everything, every little aspect of the day. 

Sometimes though on days like to day life just hits so hard that all I can do is cry no songs left in me. I hit that point at about noon today, thankfully the oldest monkey and the monkey princess were still with friends and baby monkey was sleeping. I had turned on Pandora to help baby monkey fall asleep, but for once I wasn't actually listening. I just felt so broken that I couldn't even think of a song to focus on, usually when I get that way I start working my way through the alphabet singing hymns and eventually that one I need comes. Today though it was like the music inside me had died it was all just too much I had even completely shut out Pandora playing through the tv. I had laid on the living room floor for at least 30 minutes crying when a song broke through the tear filled fog, and in that moment I knew that God was speaking to me through this song. Whatever you believe in if you have ever had a moment where the exact right song came on at the exact right second you know that it's not just by chance. For me I fully believe that God knew the only way to get through to me was by music. So if you are hurting, if life feels like it's crashing down on you, you want to give up or just need a pick me up please check out this song by Sidewalk Prophets "The Words I Would Say"

Baby Monkey has had a very rough few weeks, numerous seizures even with the Neurologist more than doubling the Keppra, his atatxia getting worse and worse and affecting his GI tract  so that he would no longer eat. After loosing 6lbs, and his Mito symptoms becoming worse and worse, he was diagnosed with failure to thrive and his specialists all agreed a gastronomy tube or g tube was his best bet/hope for a future. While thankfully we were on top of things so he never became dangerously thin with the mitochondrial disease the only way to hopefully restore his GI tract was to give him enough nutrition for his body to thrive. I admit I struggled with this decision, but all my research showed positive results for kids with mito getting a g tube as their symptoms progressed to the point baby monkey's are at. 

So anyway Tuesday morning we went to an amazing Pediatric surgeon who not only did a great job on the tube, but agreed to perform the muscle biopsy while under anesthesia.

There were some complications with the tube placement so the surgery took an hr longer than expected which meant I was extremely stressed out, but in the end all was well. It took the usual extra long time for him to come out of the anesthesia, but thankfully no seizures after he did. Two nights and three days in the hospital and we went home with a bunch of medical supplies that until I started researching I had never heard of or thought about. More was delivered that night and then another couple boxes the next day. I have now returned to the world of formula and night time feedings and while no baby crying machines beeping at me. 

Today was our first day with approval for him to eat whatever. Sadly even with 10 hrs worth of formula tonight he was still 445 calories short. Because he does eat some by mouth we are trying hard not to do more than 50% of his diet through the tube. Thankfully after talking with the GI dr, the surgeon, the oncologist/hematologist, and the dietitian they are all on board with us trying a blended diet as much as possible. So my wonderful friend the Nutri Ninja (and yes I admit my brain starts singing the original TMNT theme song every time I say or type that) and I are coming up with some fun concoctions to feed him through his tube. I have decided to be brave and taste some of these and if they are any good I will share some super healthy smoothie recipes with you all. In this case it is very true that I am the brains and he (yes it is a he don't ask me why) is the brawn. For my sanity we are going to solely use the formula and water through the tube for the next couple of days though. 

Baby Monkey has been his usual amazing self smiling and laughing his way through it all. The light in him shines so bright all around him see it.

The surgeon on the 2nd day after the surgery told his P.A. that, baby monkey "has a good soul, that you can tell the second you meet him that he is good through and through" he tends to be a favorite patient as he never fights about anything, does whatever needs and gives the nurses his adorable dimply smiles. He is a constant reminder to me to stay strong and remain positive he's like my own personal little Toby Mac singing "Get Back Up". 

 This has been a huge adjustment for the the whole family, but tonight even though the machine kept beeping at me till I finally fully fixed it's issue, and between that and his meds this may be another sleepless night for Mommy, I am ok tonight I realize that while not how I imagined my baby boy's life whatever makes and keeps him healthy is alright by me. Behind those dreams I dreamed really all it came down to was that he would be healthy, happy, have a relationship with the Lord. While the first one is far off him being on the feeding tube gives us a glimmer of hope  for healthy. Although his version of healthy will never be the same as his brother or sister we can do whatever it takes to make him as healthy as he can be.  

I know this is rather long especially for not including a recipe or anything so here is a smoothie I make for the Monkey Princess, Oldest Monkey and I that we all love love love.

Monkey Princes named it the GO GO Smoothie since it gives her energy.

1/2 of a fresh zucchini (I sliced mine about 1" thick

2 med carrots

1 cup cantaloupe (great source of vitamin c) 

6 medium strawberries

1/4 cup chopped almonds

1/8 cup unsalted sunflower seeds

2 cups orange juice 

1 1/2 cups water 

I make this in my 72 oz pitcher for the Ninja so adjust accordingly. It has a great taste a good source of protein and fruits and veggies. 

I hope you enjoy the GO GO Smoothie and that somehow this post helped you where you are at in your life. Remember whatever direction things take, "Hold On" for the ride. 

It's been so long, but I'm bringing you gf biscuits...

So much has happened since I last posted way to much to bore you all with. Important highlights my Grammy now lives with my mom and dad so we are back to being a family of 4. Somehow that has not lessened the insanity much though. Baby monkey finally has an official diagnosis of Mitochondrial disease (for more info visit the United Mitochondrial Disease Foundation website). He started the New Year with a 5 day hospital stay, where I picked up Pneumonia. So it has been an interesting start to the New Year to say the least.

But moving on as if I'd never taken a 4 month sabbatical. The oldest monkey has been desperately craving biscuits. I had run out of Tapioca flour and was searching desperately. For some reason without the combo of Tapioca flour and Potato starch in the flour blend the biscuits just aren't as fluffy and yummy. Then last week we finally found a package!!!! That made for one happy monkey. In fact he was so happy we just had to do the monkey dance, now I find a lot of kids shows annoying, but I fully admit I've always liked the Wiggles, we have the best of the Wiggles DVD and even though he's 7 going on 20 the Oldest monkey can't help getting sucked in. But, anyway, back to biscuits.

I suggest using this flour mix as I, as well as a couple of my testers have successfully used this blend, and it seems to have the best taste and texture. But I understand that everyone has their individual allergies and diet restrictions so don't be afraid to try whatever flour blend you use for breads or cookies or whatever.

Flour Blend (make 2 batches)
2 cups combo of gf flours ( I use 1 1/2 cups of oat flour and 1/2 cup of sorghum flour)
2/3 cup Tapioca Flour
1/3 cup potato starch
1 tsp xanthan gum

Now I highly recommend combining these flours into a bowl and whisking really well. For the biscuits you need two batches of the flour blend. I actually make these separately because whether it's all in my head or an actuality when I've doubled it, things don't seem to come out as well. So there you have it further proof I'm probably insane, but no one argues that my GF baking is yummy so as crazy as it sounds make it two batches. One batch throw directly into your sifter or just give it an extra good whisking. While you are whisking away don't forget to rock out, how about a little Newsboys?The on batch gives you three cups of flour.

Biscuit recipe

4 cups GF flour blend
1 tsp salt
4 heaping tsp baking powder
1 cup palm oil shortening
1 cup your choice milk substitute ( or if you use regular dairy or goat milk add 2 Tbl)

Preheat oven to 425

In Sifter with the 3 cups of flour that you made above add, salt and baking powder and set aside.

In a large mixing bowl cream the 1 cup of shortening. Now my blog is not fancy enough yet (maybe someday) to get samples or kick backs for endorsing products, so this is all me. This a great palm oil shortening. I use it for biscuits, pie crust and even frosting and even people without allergies all love my frosting. :)

Sift in the flour and add 1 cup of the 2nd batch of flour mix you made for the total of 4 cups. Now here you have two choices, for those who hate getting their hands gooey you can use a fork to mix the flour and shortening until you don't have any crumbles bigger than a pea, or you can have lots of fun and pretend you are a kid again the way I do. For the 2nd dig your hands in there and mix it all together kneading and mixing till you don't have any crumbles bigger than a pea. Pour in 1 cup of a milk substitute we use almond milk since amazingly enough nuts are not an allergy for us. If you use an actual milk whether cow or goat follow the recipe suggestion. Mix the milk in thoroughly, I do swap back to a fork at this point, but feel free to continue to use your hands. Your dough should be pretty sticky.

On floured board or counter place dough, pat down and flip over one time. Press down till approx 1/3" in thickness. Use a biscuit cutter or an upside down glass to cut out biscuits. I cook mine on a pizza pan that has the holes in it with a layer of parchment paper. I like the way they cook on that, but they work just fine on an un-greased cookie sheet with or without parchment paper. I just hate cleaning pans so I always use parchment paper.

Bake at 425 for 22-25 min until toothpick comes out clean. With GF I don't trust the outside so I always verify with a tooth pick. When done ENJOY with butter, jelly, honey or gravy. You can't go wrong with yummy biscuits. The oldest monkey even eats them without anything on them. Just don't expect them to last long! At least they don't in our house. :D

Keep baking, and don't forget just because we have allergies doesn't mean we shouldn't get to enjoy our food! I leave you with one more song this one has been played a lot so far this year in our house. 

for King and Country- Shoulders