Throwin’ an Up-date

Did you catch my reference in the title? Yeah…throw up. I figured if I had a title that was straight up referencing vomit, you probably wouldn’t read. But this post isn’t just about the mystery behind Reagan not being able to keep her food down, it’s going to be a mega update of what Reagan is doing, what she’s working on, where we’re going, etc.

Standing on the swing
standing and swinging…no big deal.

So, Reagan is crawling now. Yep…crawling.

Crawling requires a lot of hand and eye coordination, and I personally think, it’s a little harder than walking…I have no evidence to back that up, it’s just my opinion. If it were easier to crawl, Reagan would have done that before pulling to stand and cruise around her play pen.

Speaking of the play pen, Reagan had her crisis in the play pen. We took it down a few weeks after we came home from the hospital. It was so sad to look at…no one was playing in there, no one was laughing, it was just a terrible reminder of that day. When Reagan started pulling herself to stand in her crib, we thought it might be a good idea to break the play pen back out. It has been amazing. She loves being in there…I have a zillion toys in there, and all she wants to do is work. She wants to stand and look out. She wants to Ace Ventura around the corners. She’s falling better, picking herself back up and basically working it out in her play pen.

Ace Ventura Reagan
Reagan is on point!

Her movements have gone down. Rob and I feel that’s due to prayer more than anything else. The medication hasn’t changed, it’s actually decreased b/c we felt it could have contributed to her vomiting.

We added in another appointment to our weekly routine b/c there was this empty space of time where we were twiddling our thumbs so we had to fill it, right? Reagan now goes to the chiropractor. She gets adjusted. I spoke with a friend from college who’s a chiropractor out of the area and asked if he felt it would be beneficial for Reagan and he did. He referred me to a local chiropractor who specializes in babies. She explained that the spine basically carries instructions to the body from the brain, so it will help Reagan tremendously if it’s all in line. Makes sense. She also introduced me to essential oils.

I know, I know…honestly, I kept getting bombarded with this stuff on my FaceBook feed and just thought, “Really? Really. How can all these essential oils help people?” Then I realized, Ummm…I’m rubbing olive oil from Israel on my daughter every night, so I might want to perk up my ears. I asked the chiropractor if anything could help heal her brain. Anytime I ask this question to anyone, the answer is that nothing can really repair the brain. There’s no medication, no therapy that can do it. Truly, it’s for God to repair and heal the damage, and Reagan has to make new connections to get those old skills back and learn new skills too.

Anyway, the chiropractor recommended sacred frankincense. It’s believed this is the particular kind of frankincense that the wise men brought to Jesus. It was worth more than gold back then, and today is known for it’s healing properties, including helping to cure cancer. So, we mix the sacred frankincense oil with the olive oil, and at her appointment earlier this week I purchased the brain power oil, so that’s been in the mix for a couple days…we rub it all together and put it on Reagan’s forehead, the back of her neck near her brain stem and on her feet. We started that two weeks ago. She crawled for the first time on Sunday, AND she’s sleeping a little later into the morning. There could be a correlation…I’m believing there is one. Between our prayers, the oil and God flat out touching Reagan, miracles are being performed.

God is working miracles every day b/c she is a living, breathing miracle. I’ve spoken to some incredibly smart people who have access to more medical and scientific articles than me. Based on science and what we know about the brain, Reagan should be doing nothing. Nothing. I need to remember this and be thankful.

Something very sweet and unexpected that’s been happening is Reagan likes to take naps with us. This past weekend, we visited some family and Reagan needed to nap, but we had the pak and play at the resort pool and it would be a bit cumbersome to pack it up and take it up stairs, just to unpack it, etc. So, I decided to take her up to the condo and try a nap on the bed. After almost an hour of fighting sleep, hitting me in the head and flopping around, she slept curled up to me for 45 minutes. It was glorious and an awesome time of bonding for me. I just love my little girl. Taking care of her is incredibly hard, but resting with her is incredibly rewarding.

Sleep with Mommy
snuggled up with mommy’s legs
Napping with Daddy
Napping with Daddy

The one thing we can’t get a handle on is the vomit. In the last week it’s happened four times, prior to that it was twice in a two week time span, prior to that, she was sick and vomiting every day or every other day for three weeks. So we went to the GI doctor on Wednesday and he really didn’t know what to say, other than, let’s do what’s called a “gastric emptying study.” What the heck is that? Well, radioactive dye will be put into Reagan’s formula so she can get it in her body. Also, the division of the hospital that does this is called “nuclear medicine”…comforting right? Reagan will have her feeding for ten minutes while they image her stomach at the same time to see what’s going on. Then, they will image continually for thirty minutes to see how the food moves (yes, our daughter with a movement disorder will have to stay somewhat still for about 40 minutes straight, it’s just funny to think about).

After all that, they will image in an hour, and then in two hours. In two hours, she should have almost all the food gone, or no more than 10% left in her tummy. That would mean she’s processing it properly. I think she’s processing it fine…I change her diapers, stuff moves down…our question is why is it coming up? The study will also be able to see any reflux. Reagan’s on medication for reflux…which is why no one can really make heads or tails of this. If after two hours, her stomach has not emptied most of her food, then she will be imaged in another two hours at the four hour mark.

It’s crazy to think that on April 8th, 2014, one major event has caused so much havoc on her little body. Rob and I were actually remembering that in the hospital she drank a bottle after her crisis…she ate baby food. It’s almost like the damage wasn’t finished. It’s weird.

Even still, there is a lot to be thankful for. Smiles, laughs, crawling and cruising. Of course Rob and I are concerned when she vomits. Life is sustained by food and we feel as if we’re skating the line of her metabolic disorder every day. She’s getting under the recommended caloric intake b/c she wasn’t able to handle the volume so it was concentrated further…when she vomits now, it’s scary for us. It throws me into a tail spin. We’ve slowed her feeding down, we’ve lowered the volume and started giving her only 4-5 oz. at a time over 30 minutes and doing that every few hours. It’s helped some, but she still vomits, and we just barely get all 28oz into her every day. Only God knows why this is happening. Truly. No matter the years of experience and education our doctors have, they do not have the answer. Just like they don’t have the answers for why Reagan is succeeding in many areas — the reason is God. So God, please be the reason again. Help Reagan’s body keep food down, and process it like you intended. Allow her body to work in the way you designed our bodies to work. We love you and thank you for your mighty healing power and love for our family.

3 Replies to “Throwin’ an Up-date”

  1. Go Reagan! So proud of her, she is amazing! She is in our prayers often, it is so encouraging to see prayers being answered.

    Wondering if we go to the same chiro, do you go to Dr. E.S.?

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