Dreamseekers and Company

Differences in the kids learning:

Anna: Quick to decode words/read. Difficulty reading phonetically. Reads very quickly. Reading comprehension is average and recall is low (like her mother). Spelling is a challenge. Reads huge volumes of fun chapter books. Oral reading is engaging and inflection is intuitive, but enunciation is difficult.

Maggie: Difficulty (at first) understanding how vowels have multiple sounds. Reads average/slow pace. Patient with long stories. Impressive reading comprehension and recall. Intuitive speller. Oral reading is good with mostly clear speech.

Carolyn: Consistent, logical, phonetic decoding of words. Much faster reading when words are in context. Reading comprehension is good. Oral reading is monotone. Spelling… to be determined.

It’s fascinating to me how all their particular styles of learning/understanding/knowing are shown in their reading alone.

Anna loves the action of the story and flies through them with confidence. Slowing down to notice details, enunciate clearly or track what she read/where on the page was that… not her forte. If she could maintain her clarity of speech, we’d all listen to her for a long time since she carries the story with her voice. Just don’t ask her to spell stuff or remember details.

Maggie is more deeply interested in all the details of a story, noting names, remembering order of events and retelling stories with enthusiasm. If you want just the story and get the the point, do not ask Maggie. She will share all the details – every one – and her ideas and imagination about the series of events as well. She’s got the details and enthusiasm down and thankfully her spelling can keep up more or less.

Carolyn is all business. She will decode, understand and even laugh sometimes at the right places. She has always been an ordered, determined child. But breaking her voice from monotone when she reads is not a natural skill for her by a long shot.

Children are fascinating. People are.

Words Daniel knows or is learning:

Eat
Drink
Tiger/Rawr!
Eyes
Ears
Nose
Chin
Cheek
Mouth
Teeth
Neck
Chest
Tummy
Legs
Feet
Knee
Learning arms and hands and ankles and hair
I think he knows all our names. He doesn’t “call” us, so I’m not positive, but sometimes he identifies who he’s commenting on and he will repeat the names when we practice.
Daniel and Danny
All done
Ow-ow-ow-ow
Tube and “Tube on” or “Tube off” (for putting his tube on for mealtime)
Cord
In
Out
On
Off
Light
Downstairs (for requesting to go up or down stairs)
Down (as in, “Put me down.”)
Uh-oh!
Oh no!
Help!
Thank you
All done
Bath
Lay down
Change diaper (he thinks this is one word)
Scratch (learned that when his incisions were healing)
No-no!
“Jordan!”
Shirt
Pants
Socks
“I love you”
“Brush your teeth” (thinks this is one word)
Words he’s learning: bottom, back, floor, wall, head, shhhhh, what?, this!, more?…

Words I need to teach him: Radio, music, book, couch, car, doctor, home, outside, inside…

Daniel is healing nicely from his bilateral orchiopexy and his gtube placement. His bruising and scabbing is almost gone and he’s pain free except when I mess with the gtube to put the feeding extension/tube on and off. All those doctor appointments and the surgery were a big scare for him and his “honeymoon” period wore off as fear reared its ugly head. He is having trouble sleeping during the night and remaining calm during the day. He’s not constantly upset, but you can both see and hear when he’s wearing thin. His posture becomes tense, his voice raises in pitch and volume, he demands to have all the things and stops playing creatively and then rages and cries when his demands are not met. To my eyes and my heart, it is clearly a sort of acute emotional pain and it is difficult to have no immediate way to take away the hurt. We just keep staying nearby and meeting his physical needs, praying and singing and waiting with him through it.

Jordan is doing okay. We’re trialing a new medication to see if it helps him (Risperadone). I don’t know if I’m noticing any difference, but the dose is very low, so we’ll take it slow and see. When he melts down, he hasn’t stayed in meltdown for long periods of time, so perhaps that’s part of it working? He’s a healthy, curious kid and I hope he’ll be able to engage and spend more time with us (as opposed to being alone and rocking or being destructive) again soon. He seems to really cycle between months of nice and months of hard.

The girls are doing well – growing and learning and being themselves. Each of them has their own strengths and challenges and I’m honored to be in the front row as they are growing. They need both the same amount of support as the boys and far less. It’s hard to explain. Some things just aren’t apples to apples. Anna is excited to be learning the dances she’ll be performing in her ballet recital in June. Maggie is busy reading chapter books and inventing stuff with cardboard or balloons or blankets. Carolyn is a confident five-year-old who recently had her first sleepover with a friend, “because she’s big now.”

That’s all for now. My yawns are too big to continue. Let me find a few pictures.

Okay. Daniel had his first orthopedic specialist apointment this week and I’ve been trying to digest and think through what we learned. It’s been two days and I haven’t had a chance to talk thoroughly with Brian yet. I continue to reach out to arthrogryposis support groups and all the new information is hard to organize. Therefore: this blog. Just trying to get my thoughts into more order.

1. Diagnosis. The docs at Portland’s Shriners didn’t give him a formal diagnosis. Why? Because they want a geneticist to do that. They did not offer any guesses. I contacted a different doctor who specializes in AMC (Dr. VanBosse in Philidelphia Shriners) via email some months ago and he was more forthcoming, guessing that he most likely has a form of distal arthryogryposis. This doctor’s wait list is somewhere around 18 months long and an airplane ride away, so I’ve been looking into these local doctors first. Some doctors don’t bother with a specific AMC diagnosis, because the treatment doesn’t vary a great deal between types of AMC. Anyway, we’re supposed to go to Dr. Zonana, a geneticist. I think I have that already scheduled.

2. Upper extremeties: His arms and hands look pretty good. He has decent grip strength (which I deduced from a positive sounding grunt from the uppers doctor when Daniel squeezed his hand) but some joint instability in his fingers. Some of his finger joints do not bend. The uppers doctor (Dr. Freese) gave a favorable general first impression to me, but was not exceptional in explaining or summarizing or giving written recommendations. Anyway, we’re leaving his uppers alone for now.

3. Lowers: We saw Dr. Raney for this and I can’t tell whether I like her or not. She sounded experienced but she expressed a lack of confidence in the success of treatment, due to Daniel’s specific condition/age situation. Again, I didn’t get anything in writing or summarized and the lack of parent/patient education was frustrating. They seemed surprised I knew what I know. I am actually seriously considering getting a token degree in nursing just to change the dynamics of doctor/parent conversations so they don’t continue oversimplifying the conversations. Anyway, she thinks a long cast for his feet and knees, on two weeks then replacing with a new cast every two weeks for a number of months is the most likely to get his knees to 45 degrees and his feet closer to flat. That would be followed by foot surgery. All of this is fairly painful process. I am trying to learn if it would be better to leave his feet alone or even amputate and get a prosthesis in order to avoid medical trauma, but it’s been hard to talk through all the options when they don’t just volunteer a list of options with pros and cons of them all.

4. Wheelchair: I really didn’t like the PT there. The PT is in charge of finding out what type of medical equipment would be most helpful or necessary. She was rude, disliked our family dynamics, questioned whether I was providing appropriate care for Jordan, and repeatedly pushed medical equipment that is less important to me. She didn’t sound incompetent, so that is good. She’d like to see Daniel weight bearing more to increase the strength of his leg bones. She’d like him to be in a gait trainer and stander and puts a wheelchair secondary… suggesting that a powered chair is a better choice for him. He can’t get up or down on his own, so a stander or gait trainer is not going to be something that helps him to be with his siblings freely. A manual wheelchair, perhaps with a power assist would give him the most flexibility around the house and outdoors and be most developmentally appropriate. You know, in my humble opinion.

5. Xrays: We took xrays of his pelvis/hips area and of his feet. I hated that they wanted his genitals unsheilded for the xrays. This kid has enough adverse experiences. I don’t want to add infertility to the list. Anyway, we got the xrays finally and that’ll be useful. They didn’t explain the xrays to me except to name a few of the bones to me while we looked. Soooooo, I don’t know what we learned from them.

6. Other body parts: His scoliosis looks really mild, his funny bumpy rib did not concern them… so that’s good.

7. I asked for help getting padding for his bottom while he’s a butt scooter and has begun to get pressure sores a few times. They did not help with that. I asked for help getting a wheelchair and they will have me schedule a second evaluation before they will do that.

8. How did Daniel do? Despite people getting in his space, touching and moving his body parts, he was amazing. But then he rocked and barely slept all night. Poor, brave boy. Last night he was awake from about 11-2. I can’t think of anything else going on to wake him up except his nerves.

All of this to say, I am not ready to put Daniel in casts for 3-4 months, followed by multiple surgeries at this point. Time for second and third opinions. I have contacted a lowers specialist with a great reputation named Dr. Dobbs and he says that he can help him. I have a little more confidence in letting somebody treat Daniel in this way who has a reputation for best-possible outcomes. I have referrals started for Seattle Children’s, which has an arthrogryposis team that is well spoken of. And I have spoken with a number of other parents of kids with AMC and also adults with AMC who recommend everything from no treatment at all to do “all the things no matter how it hurts.” Suffice to say, it’s not a clear pathway.

Is that ironic that it’s not a clear pathway? Pathway. Walking. Feet.

Proverbs 3:6
Trust in the Lord with all your heart; do not depend on your own understanding. Seek his will in all you do, and he will show you which path to take.

As I drove to the hospital on Tuesday, this song played on the radio twice. I’m believing God has a really good plan for Daniel. Including some healing in his body.

“Don’t you give up on a miracle
You’ve got to speak to the impossible
You gotta
Pray till your breakthrough breaks through the ceiling
Keep on believing
Don’t you give up
Don’t you give up
On a miracle”
~Miracle by Unspoken

Today is January 2nd, 2018 and Brian just went back to work after a week off of work and I’m trying to figure out this momming-on-my-own thing again. Of course, Jordan woke up with diarrhea, so it has tested my skill level right off.

My list these days looks like this:
Boys BSLSDS
and then a few other things

Explanation:
Breakfast and toileting for Jordan and Daniel…. for Breakfast, Snack, Lunch, Snack, Dinner and Snack.

That list takes all day long to finish!!!

Today, the girls have restarted their trickle of homeschool studies, mostly keeping up with math and a few other easier things to keep their brains engaged in reading/comprehending/handwriting than to learn a great deal of new information. I’m hoping to start a history program, but it requires all three girls to be engaged at the same time…. which is a tricky prospect. Mood, other school, other chores, hunger, random owies and distractions make that difficult. I’m still noodling over the is-probably-obvious-but-isn’t-coming-to-mind solution to getting them all sitting down and interested at the same time.

We had a pretty beautiful Christmas. Brian had somehow magically managed to save four vacation days and took the entire week off from working in the office between Christmas and New Year’s Day. Those days were gobbled up by a date with each of the girls. One day was rock climbing with Maggie. The next date I stole…. and Anna and I went to see The Nutcracker on Christmas Eve. And it snowed. The next date was a trip to the pet store to window shop and McDonald’s with Carrie. Monday was Christmas Day for us as a family and then with Brian’s side of the family at our house. Thursday was Christmas with my side of the family. Are there any days not taken yet? Well, Sunday and Monday before Brian went to work we finally relaxed and it was my favorite part. Jordan struggles a lot with the holidays and Daniel was pretty stressed. But we made it. And the kids had a blast.

I’ve been working on Daniel’s meals again. I wanted to calculate what percentage of his calories were coming from fats, protein or carbohydrates. I successfully found the ratio that is appropriate for his age group. I learned about what to change to match it to his goals (gain! grow!). And I found a really smart program for entering meals that calculates a report. (It’s cronometer) The report sucked me in even deeper as it shows beyond macros (fats/proteins/carbohydrates) and gets into micros (types of fats, amino acids, vitamins, minerals, etc.). Tried to figure out how to adjust Daniel’s average day of eating for optimal nutrition (dude, we should all do this for ourselves!) and decided to add a drink of milk and a calcium supplement. In other words, my foods were looking fabulous, but a few more carbs and some calcium were an improvement. Yay me! Yay Daniel!

Now that the big holiday thing is behind us, I’m starting to think (too much) about Daniel’s first medical procedures since that miserable constipation cleanout the week we got home from Bulgaria. Next Thursday, Daniel is having surgery for undescended testicles and for the placement of a gtube. I have grief over initiating a time of pain and anxiety and stress for Daniel. We’ve talked through all our options and this seems to be the best path. But the best path does not always mean no pain. The gtube is particularly known to be painful for the first couple days and then sore for a month or two. 🙁 I’m anxious about how it will go down with the doctors regarding feeding Daniel. If they want to put a full meal in his tummy shortly after anesthesia, I’m not going to be okay with that. I’d like to feed him what I’d feed any of my kids after a surgery…. juice…. then applesauce…. then oatmeal…. then a small meal of eggs and toast… you get the idea? But they plan on me feeding him a nasty, sugary, oily, full calorie formula. I have a plan, but I do hate confrontation. I take being Daniel’s mom and advocate seriously and I’m proud of being his mama. But whew!

Other things I’m trying to do: cook, exercise, PT for a sprained foot, PT for Daniel, homeschool, play lots of video games

Speaking of video games…. pictures from Christmas!

On Thursday, we had my side of the family over, complete with five cousins, an aunt and uncle (missing my sister and her husband!) and both grandparents. <3

And that’s it folks! I had some really rough patches emotionally, but it was a time of beauty and love. Merry Christmas and Happy New Year!

December, 2017

Hello!

It’s the end of a year again and what a year it was! There are now five small Davises running, stomping and scooting about our home. Brian and I discovered that being thirty-four years old is much like being twenty-four, but with body parts that can’t take the abuse they once could. It will be exciting to find out just how much we can get out of these much-used bodies of ours before we make it to the next decade! Anna is 10 years old, Jordan and Margaret are 8, Carolyn is a grown-up 5 and Daniel is the baby at 4 years old.

Anna is busy in fifth grade schoolwork and twice-a-week ballet. She appreciates good taste in clothes, does her own hair for ballet class and knows just about as much about how our house runs as I do. Jordan is home from public school third grade this year, trying to find a balance between being happy and being sad, behaving and misbehaving, being nice and pulling hair. As for many eight-year-old boys, this is a difficult balance for him.

Maggie is a strong second-grader, advanced in math but hating to sit still for it. She knows which clothes are scratchy and which are comfortable and always goes with comfortable whenever possible. She loves to climb and explore and invent and delights us with her playful spirit.

Carolyn is reading and doing math as she rules her domain with an optimism that is confident of her authority. She is the first to snuggle, the first to speak and the last to notice what is happening around her.

Daniel is the newcomer to our unpredictable crowd. He entered our hearts last Christmas, was gathered into my arms on October 4th and entered our home to stay on October 21st. He is a bright light and quick to learn. He has a number of struggles ahead of him as he has multiple joint restrictions and hasn’t been persuaded to eat since mid-October. He’s settling in quite nicely and has a feeding tube that is helping his tiny self gain some healthy weight.

Maggie, Carolyn and Brian have been going to a Tae Kwon Do class every Monday evening and it’s been a pleasure to have the house mostly empty once a week. (haha) Daniel has had quite a few doctor appointments, but I think I successfully redirected the rest of them to wait until January so that we can all have some family time until then. Daniel is still pretty scared of going places, so we haven’t made it to church yet, but hopefully my practice trips to the grocery store now and then will encourage him that going places is rather nice.

I’m happy to say that a number of friends and family have been incredible to us the last two months. Friends have offered all kinds of support as we endured the grueling trip to Bulgaria, a week at the hospital and a plethora of appointments since. I have accepted every single offer of support, I think, and it’s done me good. Thank you to everybody who have cared about us and about Daniel… we can’t do alone what we can do together.

As we navigate beautiful and difficult seasons in life together, I continue to believe that our greatest purpose in life is to love God and love each other. These two are intertwined for me. Thank you for loving us and we love you too!

God bless you,

Brian, Rachel, Anna, Jordan, Margaret, Carolyn, Daniel