Dreamseekers and Company

I don’t know why I typed this. For some reason I wanted to write it down.

A day at home. Normal version.

6:15 – Brian’s alarm goes off and I go back to sleep, listening to the beginning stirs of Daniel and Jordan who have been waking up before 7 for awhile.
6:45ish – I try to sneak to the bathroom without Daniel seeing me.
6:50 – Sing Daniel’s good morning song and get him up, wrap a robe around myself and begin the day. Go downstairs and eat the eggs Brian made for me.
7:10 – Get Jordan up before his stomps and giggles and shrieks wake the girls and take him potty, redress, take him downstairs.
Make Jordan’s breakfast (oatmeal, butter, milk, egg, brown sugar, cook, add yogurt) and feed it to him with a glass of juice.
Give hugs to the girls as they trickle in and help them get their milk or juice poured if the cartons are too full, listen to dreams had the night before, talk about what they did/will do/imagined and tell them that they do indeed need to do their chores today.
Fix Daniel’s meals – breakfast, snack, lunch, snack, dinner – from the meals made previously and stuck in the fridge. Take out more food from the freezer for Daniel or Jordan as necessary.
Sit down to feed Daniel his breakfast. Be sure to send Jordan to the playroom so he doesn’t get into trouble while I’m busy.
8:10 – Go get dressed, maybe shower, check email, read facebook, look at the calendar, remind the kids to do their chores (x100 – just assume I’m doing this until 9-11am or whenever they are finished). Today I have a pediatrician appointment at 9:30am for Daniel… scheduled specifically for today, because Brian is working from home, which means I can leave Jordan home at least.
Respond to Daniel if he cries or yells… or ask one of the girls to.
Try to make my bed and straighten up the bedroom.
Make phone calls – reschedule appointments, fix the auto insurance, mail Christmas cards, enter receipts, balance the budget, etc.
Do my 8 minute workout thingy (30 Day Fitness app)
Hold still and be quiet for a moment.
10am – feed Daniel his snack, feed Jordan his snack, change Daniel’s diaper, take Jordan potty, start the girls on schoolwork.
Rotate through kids doing schoolwork.
11:30am – lunchtime – start the girls on lunch, feed Jordan his lunch (that boy is always hungry!) and then take him to the bathroom. Feed Daniel his lunch and change his diaper. Remember I haven’t put vaseline on his lips (he doesn’t lick his lip, so it’s always dry and flaky). Update Daniel’s food/poop/supplements chart.
Help the girls with their lunch.
Remember that we eat dinner every day and pray I have something easy to make.
Remember that I need to eat healthy and dig around the fridge for food. Find the tea I started earlier and pretend it’s ice tea. Eat. Drink.

1pm – Enter the zone of not remembering. I’m typing this in the morning and I don’t remember what happens in the afternoon.

I think i wander from place to place trying to remember what I should be doing, putting out fires with the kids, attempting down time that never really happens and stuff like that. Monday and Thursday I drive Anna to ballet. Yeah, going to just call this little post good. I need to take that shower!

Medical update on the bottom.

Ello Danny! (whenever he sees somebody)
All goh (for all done or all gone)
EeeeeT (when it’s time to eat)
Nigh-nigh (when he’s ready for bed)
Diapah! (When I go to change his diaper)
Eeen (When we plug something “IN!”)
Ow! (When we pull the plug OUT!)
Yight (Pointing at the Christmas lights)
Elp? (When he wants help with something)
Dow? (When he wants to be carried up or DOWNstairs)
Uhn, oo, tree (Learning to count to three… sometimes starts counting in Bulgarian I think?)
OH-pah! (When we pick him up or put him down)
uh-uh! (Approval)
EH. (disapproval)
No! (no!)
No-no. (It’s something not allowed)
Uh-oh! (Something’s wrong)

We’re practicing lots more and he chatters away all day and sings with songs. He opens the markers and draws on stuff and himself. He sings songs and sings along with any cd he’s played more than once.

Also, he repeats everything we say, so you can often hear him say things like, “Jordan, all done!”

Yesterday, Daniel had imaging done of her upper GI. It showed that his swallow is good, his stomach is good, and his small intestine makes the correct first loop. It also showed a significant episode of reflux. I don’t know whether to be concerned about that or not… he was laying on his back with an ounce of weird liquid recently pumped into his tummy. It’s something I’m still thinkin about. I know I don’t want a nissen (surgical) procedure done on him because of one not-uncomfortable-to-him wet burp. But we’ll be watching that. Happy the rest of his anatomy is in order!

Jordan waited a looooong time without food before they took him back to get ear tubes. When the doctor came out, she said that he had very hard balls of wax packed in each ear canal and she would definitely not have been able to get that out in the exam room. She said his eardrums weren’t that bad once she made it through the wax, but she put in the tubes anyway since it’s almost flu season and he does have classic Down Syndrome small canals. But she is optimistic that it’s the last time he’ll need them. Now I am also noodling over how to keep the hard wax from building up again. He’s got to be hearing better now!

It’s good to be back home. Spending the day at a hospital is not my favorite thing. I did get to visit with a new friend and meet their brand new Bulgarian daughter. Their little sweetie has leukemia, so they are looking at some significant hospital stay time. Pray for them and if you’re local, send them local restaurant gift cards! 😀

Introducing Rebeka Ryah!

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.