Weekend Recap

Well it was an odd weekend for us.

Friday Ally was complaining that her wrist hurt. It was swollen and hurt to move it. She iced it off and on at school and couldn't write. By the time I called the doctor Friday evening we had to take a Saturday appointment.

A friend gave us a foot bath for Ally's feet. She tried that out on Friday night. 

Becky went to a game night at a friend's house and Ally and I watched "say yes to the dress" for a while before bed.

Saturday we went to the pediatrician. It was a long wait, as weekend appointment usually are, the doctor had her wrist X-rayed, there was no fracture she asked that if it still hurt on Monday we call our regular pediatrician and go see the orthopedist.

We texted this picture of us waiting for X-ray to Becky.

We were home about 2 hours after we left home.

About 90 minutes after we got home, ally started crying that it hurt so much. She said the pain was a 10, she couldn't focus and was hysterical. So Becky and I took her to our local emergency room. 

At the ER they rechecked her X-ray. Our pediatrician office is in the same building as the hospital so it's the same radiology. The ER doc confirmed it wasn't broken but he put her wrist in a splint and told us to keep her medicated with ibuprofen and acetaminophen. She said the paid was about an 8. They said we have to keep the splint on until we see an orthopedist.

The Sports Medicine Clinic at Children's where Ally's orthopedist is opens at 7am so I will call then and try to get an appointment tomorrow.

It made for a difficult Saturday.

Today I had a mamogram. While I got that done Ally and Becky made a movie with the dolls.

The set.

Becky was an amazing cinematographer shooting around cat Carl, and so patient with director Ally.

Then the 3 of us went to the mall, ran a few errands and visited the American Girl Store.

Ally got a new doll, meet Amanda! She looks just like Ally, and Ally picked out her name. This is a selfie Ally took of them in her room and texted it to me. 

I almost cried when she showed us Amanda's balance beam routine that Ally made up. She even elevated the beam. 

The incredible Ally. She is in so much pain but still has her sunny disposition and is always ready with a smile for my camera.

Further diagnosis

At the bottom of this post is the full summary I wrote up after our appointment this week at the Pain Clinic. It's been two days since then and I am still a bit shell shocked at the the thought of Ally's pain lasting for months more. Ally as usual seems to be taking this better than me. I think part of that is that she doesn't really understand it. Maybe that is a good thing. 

Tomorrow Becky and I have a meeting at Ally's school to talk about getting Ally set up with an official 504 Plan to accommodate her pain.

Everyone at Children's Hospital is really good at talking to Ally, and making sure she knows she matters and she is who they are talking to first, and then I come second. The great thing about this is that it empowers Ally and it engages her to want to take some control. The doctors talked about the importance of sleep, and gave us a handout on sleep. That night Ally sat down with us and drafted her sleep routine. 

So no more of this. Now it's just a couple of pillows and only 4 stuffed animals. And a new mattress has been ordered. Many thanks to Gruncle and Suzie!

Above the new bedtime routine:

Stretching

Bath or Shower

Lotion (and pjs)

Read and eat Snack while mama reads

Relaxation Breathing

Brush Teeth

Sleep

 

Some photos of the bedtime reading.

And in case you wondered what some of the alternative treatments we've tried are. 

It's acupuncture, moxi-bustion, and cupping. All 3 are done at the acupuncture center at Children's. Ally really likes going. The acupuncture portion is really relaxing, the moxi-bustion is fine, Ally is indifferent to that. In case you were wondering the doctor holds a tightly wrapped and rolled package of mug-wort that has been set on fire over areas that the needles were placed. Officially 

"Practitioners use moxa to warm regions and acupuncture points with the intention of stimulating circulation through the points and inducing a smoother flow of blood and qi."

But the final procedure is cupping, and this tickles Ally and she giggles thru the whole thing.  In this the doctor applies glass cups which are suctioned to several places and the negative pressure provided by cupping can loosen muscles, and encourage blood flow. The side affect of the cupping is that it leaves marks on Ally's back. She doesn't mind at all. So far she has had two session and will receive 4 more. 

Ally as I said remains upbeat thru all of this, most of the time at least. She has rediscovered her love of the gymnastics bar. We have set her practice bar up in the house again, and she works on it every night. She is desperate to get her kip which is a very advanced skill. 

She even has grips so her hands don't blister and bleed from the friction on the bars. 

Another highlight in all of this is love and support from family and friends. 

Great Aunt Martha and Uncle Phil sent Ally flowers and a stuffed animal.

Another big eye Bea.nie B.oo. This one is named Freeze and Ally was excited that it's birthday is November 17! She was so thrilled. 

More complete report:

Ally and I went to the Pain Clinic at Children's Hospital. It was a 4 1/2 hour appointment.
Good News and Bad News. 
Good news is that physically there is no longer any injury in Ally's ankle or foot. She has full medical clearance for all sports and activities. As pain permits. 

That is the Bad News, the pain.  Ally has developed a nerve problem, where her nerves are sending pain messages but there is no actual cause of the pain. They were clear this is actual pain that Ally is experiencing. It is not "in her head" and the key is to "retrain" her nerves to stop sending pain messages to her brain. The doctors want her to get back to as much activity as possible and work thru as much pain as she can. She has to be careful that in guarding against the pain she doesn't fall and hurt herself. The more bad news is that the getting rid of the pain is going to be a long process. They talked about months not weeks. But that getting back to more activity and no longer wearing the boot and increasing physical therapy, continuing acupuncture (she started that last week) along with some mental mindfulness and relaxation techniques they feel we should see some improvement within a few weeks. We start at physical therapy at Children's Hospital next week. Ally's pain level is at a 6 or 7 all the time right now. The Pain Clinic feels we should see some results, like down to a 3 or 4 within 4-6 weeks. If not then we go back and she probably gets fast tracked into an out patient pain program. The pain program has a very long (several month) waiting list and its a 5 day a week 6-8 hours a day program of physical, occupational and psychological counseling to get her brain and central nervous system "retrained" as they call it. They hope this isn't necessary but put her on the list for it, just in case she isn't better when a spot opens up, and they were pretty clear that I should call them back in 4-6 weeks if there is no change in Ally's current condition and pain level. 

The Pain Clinic Team, and there were 5 doctors plus 1 physical therapist, were thrilled that Ally has been keeping up with gymnastics, and encouraged her to start back at ballet. We talked with Ally about working thru the pain, that we all know it will be difficult and painful, but that it is really important. I think she understands that as much as she can, but she is also scared.

They asked that Ally stop wearing the boot. She agreed to try. The thing is that without the boot her pain is at 7 or 8  to walk around, and I don't really know how much she can "work thru the pain" the pediatric PT next week is supposed to help me figure that out with Ally. 

The doctors said they don't think medicine is a good choice at this time. Apparently it's tricky to prescribe medicine for this type of pain for someone Ally's age. It takes 3-4 months to get the does right, then she'd stay on the right dose for 3-4 months while she was pain free and then it takes another 3-4 months to wean her off the pain meds. I had to agree I don't think that is an ideal scenario. 

The Pain Clinic psychologist will be in touch with Ally's school about making some accommodations for Ally, like more time to get places during school (because she walks slow) and having a safe place for her to go if the pain is bad, and maybe a place for her to practice meditation and other mindfulness activities to deal with the pain. 

Thank you as always for your love and support. Ally, Becky and I all appreciate it. 

PS. if you had not heard, Becky got the results of her throat PH test last week. She does have laryinginal reflux, which is reflux in her throat and larynx. This is what is causing her cough. She is on a new prescription and medicine regimen and should see relief in 2-4 weeks. 

Christmas 2015

Christmas Day! It was a rough night with the animals in our house. Beth did not want to sleep with Penguin - so the hamster was relocated to the dining room, which made Carl the cat a bit wild and adventurous. Cloey snored louder than Becky, and Nali the cat puked and pooped not in the litter box! This meant that I dint get much sleep, but the rest of the people in our house did, and Grandma and Poppy slept well at the hotel. 

 Christmas morning - the stockings and the tree.

Ally hung out on her top bunk with Beth and Cloey waiting until Grandma and Poppy arrived. 

Ally so excited to go out in to the living room.

Of course Cloey opened her stocking first.

Ally decided she wanted to open her Advent calendar before her stocking or gifts.

$5.00 for the final day!

Soon in relative peace while Cloey was occupied with a chew bone, we started opening stockings.

Christmas really is all about the kids. Ally was great - so into opening gifts, and excited for everything,

Beth

Cloey soon tired of her rawhide and was all over grandma and poppy.  So Becky put Cloey in her crate:

Lots of accessories and lip products this year - Ally got a head band, I got a scarf, I think everyone but Poppy got at least 2 lip balms.

I bid on this wreath at the Festival of Wreaths when we were on Nantucket for Thanksgiving. Ally kept asking if I won, but I kept changing the topic every time she asked. She was thrilled!

Santa did bring Ally a jewelry box, and lots of school supplies and chapsticks.

Ally's final gift was from Mommy and Mama. The gift bag was so big we joked it was big enough for Ally.

So she got in it!

She really is all I need for Christmas.

She was thrilled with some new A.merican G.irl doll things. As soon as gift opening was over she asked Grandma to play with her. They have been in Ally's room for hours!

The other big gift this year was a ring for Becky.  Its hard to photograph jewelry, but I wanted to document it.

Christmas Eve!

Grandma Debbie and Poppy arrived on December 23, and Aunt Beth flew over on the 24th. It was a fun day of games, cookie baking and time together. Ally went to physical therapy in the morning, and we picked up our tamales and side dishes for our traditional Christmas Eve feast.

On December 23 Ally received a Penguin crystal necklace in her Advent Calendar.

On the 24th it was some more Shop.kins and a special bag.

 Its not Christmas with out a game of Rudolphopoly.

Ally loved playing with her hamster Penguin and Cloey in her Santa hat

Ally left her note for Santa and cookies for him and the reindeer.

Our beautiful cookies, and feast!

Debbie brought these really adorable candies for each place. It is 2 chocolates glued down with the Luke 2: Christmas Bible verses on them, to look like an actual Bible. We all read the verses out loud together.

Going to Christmas Eve service – it was 67 degrees outside! We didn’t wear coats!

At church. Such a wonderful time.