The Davis Family

Daniel is a darling. He really is a treasure. The girls love him and are always interrupting their meals and chores to go help Daniel. Yesterday they were all sitting on the couch watching Mr. Rogers… I asked why they were watching tv without asking me first. They said they turned it on for Daniel. So obviously, anything is okay if it’s for Daniel.

We love having a baby in the family.

Daniel is bright and curious. He learns quickly. He has a really limited scope of interests at present… limited primarily to cords, wires, plugs and music.

His health is stable and he is pooping on his own without any medical supplements! I have a healthy food plan for him and am glad to have a feeding tube, because he would not be eating much otherwise and what he does eat would be really difficult. With the feeding tube, the stress is off and we can build trust and a relationship before asking him to do something stressful for him.

We have had a couple weeks off of medical appointments, which has allowed me to get my “feet under me” so to speak. My personal reserves have refilled to something that is shallow, but no longer withdrawn. My emotions fluctuate more wildly than I’d like. (shrugs) One day at a time.

Tuesday we meet with a surgeon about Daniel’s funny diaphragm and will get closer to finding out if we need to be concerned about it. Also we will schedule a minor surgery for undescended testicles. (Leaving them up in his abdomen increase his risk of cancer signficantly and also reduce fertility) Hopefully it will be minor. I keep telling myself that. Speaking of minor surgeries, Jordan will be going under at the end of the month to have his ears cleaned out and probably tubes placed.

We’re barely doing any homeschooling, but the kids have picked out a kit every few days or so to explore. I also gave them a special chore chart for earning summer camp this summer. It’s good to have special things to look forward to. Speakign of special things – Thanksgiving is going to be very low intensity this year. Christmas too, but I think we’ll actually get together with some family a bit for that.

Enjoying being home and slowly rediscovering my life….

A few photos and videos:
Feeding therapy for Jordan and Daniel consists of the girls playing with food and the boys being invited to play with it also. The girls eat as they play. The boys…. mostly throw.

Just wanted to say… I found the cord for the camera! Here are a few pictures. I’m doing well and so is the whole family. We’re finding our new rhythm and I’m spending my time feeding boys, changing diapers, blending food, helping girls with their meals, telling girls to do their chores, and housekeeping. It feels GOOD to be settling a bit. We’re still keeping our world very small – not going places much. I am exercising again and it feels really good. My goal is to run a 5K in March and to do it faster than last March when I ran one for the first time!

My view from my computer.

Dog in the kitchen!

Pretty girl!

Good morning! He was soooo excited that he had the laptop. I was not. I took a picture before I took it away, though!

Here’s Daniel’s bed next to our bed.

Here he is in cozy pajamas (size 24 months) while sitting in front of the space heater.

Daniel LOVES bath time. He is not a big fan of drying off, though! He hates to be cold!

I didn’t have a great picture of Jordan, but here he is hanging out in the play room!

Carolyn… adult rubber boots, nightgown, pirate hat… I think she’s going to get the mail with me.

Daniel fell asleep in Jordan’s bedroom with all the wires and toys he’d taken with him.

Daniel keeps playing while he eats.

This is what it looks like when I feed Daniel. I find him wherever he is and… feed him from behind! haha

Anna was too old to play in the grass clippings much, but she eventually caved in and carried out some old blankets for beds.

Bigger pile!

First, we need a pile! Hurry!

So many games can be played with freshly cut grass!

They were playing with the grass clippings.

Enjoying his sisters’ games!

My spunky five year old beauty.

Daniel outside at home for the first time.

Daniel just hanging out yesterday:

It takes a lot of phone calls and messages and online research and talking with other special needs parents to “make the call.”

Decisions like: What to feed a child who is malnourished? How about constipation prone? How about through a tube? All kinds of decisions that aren’t quick to answer. What do I do if I don’t like a doctor? What if they don’t like me? haha

Different fruits of my labor:

A healthy meal plan, complete with calorie counting, the ability to feed in Daniel sized portions (even when mixed with water so it can go through a tube), constipation friendly, not overly high in fats, nutritionally balanced, and it even overlaps with Jordan’s blended meals. I’d like to just feed him what the other kids are eating, but through the tube, but so long as I’m working with such a skinny child, I’m going to count calories and do the extra work.

I’ve decided that we’re going to go forward with getting a G-tube. That’s the “button” or tube that is surgically inserted into his stomach through his abdomen. It’ll get the tube off his face, but more importantly, out of his throat, so that it will be more comfortable for him to eat by mouth. He isn’t physically stable enough to support a few months of refusing food and water at intervals like Jordan was when he learned to eat even through anxiety. (Jordan accepted just enough food and liquids to not get a tube… and he was not as skinny as Daniel is. Daniel doesn’t have the room to refuse food.)

Ummmm, I’ve put off as many appointments as possible to give him a chance to feel as safe and stable as possible. Medical appointments are stressful for him. They’re stressful for me and the family unit also. A trip down through traffic into Portland for a one-hour appointment wears me out for the entire day… and we are gone from the house for half the day after driving… and all the time getting out of the house before we leave so that everybody is fed, diapered, toileted, dressed, has toys, etc. Man, it’s grueling. (I have Jordan too, you remember?)

Anyway, my mind is wandering. My room is messy. The learning is happening. I have a mixture of a good medical team and a clueless medical team and between the two, we’re going to get Daniel’s little body healthy even as we work on helping his heart and mind to heal.

November: G-tube and Diaphragm eventration appointment with pediatric surgery
December: Jordan ear tubes and follow-up. Also, probably G-tube surgery for Daniel and another GI follow-up where I try to get the other formula approved again… also trying to switch providers
January: First Shriner’s appointment, surgery for undescended testicles, unknown GI involvement
February: Feeding clinic appointment on the calendar so far

Time to take Anna to ballet and go to the grocery!

I’ll post cute pictures as soon as I find where Daniel has scooted the USB cord off to.

In which I bash commercial feeding products:

Daniel has a feeding tube. That means his food bypasses his mouth. When it comes to nutrition… that is about all that’s pertinent, so far as I can tell. Well, you ask a Gastroenterologist or a dietitian and so far as I can tell, to them it means that the child suddenly has unusual dietary requirements that must be met with a special formula and regular appointments to weigh the child and adjust his “feeds.” This alone seems frustrating and unneccesary since Daniel doesn’t have any sort of GI disorder. We’re only on their radar, because he arrived in the country constipated. The malnourishment and dehydration is something I know how to work with. And I’m thrilled to have the use of a ng tube to help us towards health. But I went to his follow-up appointment today and learned very little. Except that they want me to put formula down his tube instead of food.

I looked at the formula. I don’t like it. I don’t understand why they love it. First of all, it’s produced by Nestle. You got that right – the same place that sells candy bars. It’s not a good sign. Then, I heard that kids (and adults) struggle to eat it as a meal and need it dripped continuously so that they don’t get nauseous. Umm…. that’s not a good sign. And then I read the ingredients. Let me give you a little comparison in the nutrition information between… a Snickers bar and one can of the formula:
Total fat: 11g vs. 12.4g
Total Carbohydrate 28g vs 27.5g
Protein 3g. vs 7.5g

Wellllll, you say, maybe the carbohydrates in the formula are healthy carbs, whereas the carbs in the Snickers are primarily sugar. Here are the first three ingredients of Nutren Jr.: Water, Maltodextrin, Sugar

I have the can right here in front of me. No joke! It’s like fortified sugary cereal… it might give you nutrition, but with a huge sugar punch! Gross.

(sigh)

So his GI and dietitian weren’t thrilled that we didn’t want to feed this to him. And they were uncomfortable that I’m feeding my child food. And they want me back in a month so that they can weigh him and adjust his feeds accordingly.

I don’t want to go.

So now that I’m home, I’m going to work on Daniel’s meals… making sure I have healthy meals for him with adequate or high levels of calories and NUTRITION. And I know some people are going to be uncomfortable with me choosing to feed my son FOOD. And that just confuses me. If you’re a pro-formula person (not because it’s convenient, but because you believe it’s healthy) then tell me this – if you lost the ability to chew tomorrow, would you like chili and cornbread pumped into your tummy with that feeling of warm happiness… or would you like a can of vanilla Nutren to burp and taste and feel nauseous on for the next few hours? Which one do you think would improve your quality of life?

Why do dietitians like this stuff?!??!???

A few things I want to share after yesterday’s blog post…

Brian came home early and I went for a walk/jog and it lifted the emotional weight quite a bit.
I woke up this morning and wondered if I had made up all that stuff yesterday.
By late morning, I could taste it again and as the day continues, the battle for my thoughts and emotions becomes more pitched.
I am not surprised by any of this… but it doesn’t exactly make it easier.

The physical and emotional strain of adoption is real and it takes its toll. It’s completely worth it. Every bit. We’re only doing what we’d want done for ourselves if we were in our kids’ shoes. Actually, we’re doing less than that, but we’re trying to do what we can. We don’t have any regrets and we don’t feel particularly special or noble or anything for being parents. Daniel needed a family. We needed a Daniel. But love and relationships aren’t born in a moment. Neither is learning to live together. Throw in some medical and health challenges, jet lag, doctors orders and the usual life stresses of being the “adult” in a house full of children and… well, you can see, perhaps, why my emotional stability is gone.

I am proud of us. I am proud of me. I am proud of Daniel. I’m proud of Anna, Jordan, Maggie and Carolyn. We can do hard things.

And sometimes we crash and burn.

So here I sit, in the middle of my brokeness and I want to thank each of you who have commented, prayed and offered help. I am accepting help. I am so grateful. You all spoke words of truth and solidarity to me when my mind couldn’t hear it. It hurt. It still does. I’ll keep taking one step at a time and one day at a time. One meal at a time. One diaper at a time. It’s step by step to the other side where the whole world isn’t consumed by the present moment.

That’s it. Clarity over!