The Davis Family

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

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!