Feb/March updates

Hello friends,Wow time is flying and we've been absolutely swamped.So shortly after Valentine's Day I believe a day or two after Ariel got this red spot on the back of her hand.It looked a lot like a flea bite and I thought nothing of it.

A day later it developed into three little blisters.I still thought nothing really of it.Twenty four hours later and it was all over her hand and looked like a burn.I took her into the E.R. to have someone look at it.  

 The doctor we saw was pretty useless he looked at it did a swab put Silvadene on it and sent us on our way.Saying this was Cellulitus.Usually if it's that you use heavy duty antibiotics.He did none of that.The Silvadene made her feel like she was on fire.He didn't address her pain at all.

We went home and the lesions continued to appear all over her arm.We went to wound care and saw several doctors who had no idea what was going on.

 We ended up going to the E.R again,because her pain was so bad.We got a really nice doctor who was concerned about her pain.He gave her something for it,but after hearing how she had the blisters he thought she had shingles.He explained that because of her having CRPS and her body's and immune systems weakened state that her resistance was low and so she developed shingles.It made sense,but in my mind I remembered my son having shingles on the back of his neck and them not looking like this.

The more research I did the more I was convinced this was not shingles.
We ended up going to another doctor that Saturday and she was like this is not shingles.She put her on Gabapentin for nerve pain,but after getting to a certain dosage she was having too many side effects.We also drove an hour and a half away to see a Dermatologist who I wasn't too impressed with.He was just like "I don't know" to everything I asked him.He did end up doing a biopsy that just showed inflammation.Definitely showed this was not shingles.I asked him why her arm was so swollen and he said to me "Not my field" GRRRR!!!!

I had seen a documentary about a girl who got lesions from CRPS.I relayed this to her Sports Medicine doctor.Who did research and found that yes people get lesions from this,but the pain medicine doctor wasn't convinced and so he put her nerve blocks on hold until we saw countless doctors.She was finally cleared and then was cancelled again,because the doctor didn't want to do them with the lesions.

This is one of the most painful diseases out there,but they weren't doing one thing to deal with her pain.Plus I ended up spending a ton on different creams and bandages trying to find something to help her.We did go to wound care several times.We finally found what works for her wound care wise.It was so frustrating seeing my daughter in so much pain.Then they told us March 11th they would finally do the blocks.She was officially diagnosed with this in Jan and they made her go two months without squat for pain.Due to how the opioid crisis has gotten they've gone so far the other way that people with serious chronic pain conditions just get to suffer.It's not right.So it was just a lot of time dealing with her continuous pain.We did everything we could to keep her as comfortable as possible.

 

At this time we were also dealing with Daniel who had broken his foot in the snow and Gilbert still recovering from foot surgery in December.

 At the end of February Daniel and I went to the scrapbook party for The Seattle Thunderbirds.I do scrapbooks for two players.It's pretty fun,but can be pretty time consuming at times,but so worth it. Daniel had fun talking to the guys about hockey even though he can't currently play due to his injury.My birthday is on March 11th,but we knew we would be at the hospital so the kids and hubby did a little party for me.Ariel even decorated.

  On March 11th we took Ariel to get her nerve blocks.This was all the way in Bellevue,which is almost two hours away.We got there and the nurses were wonderful they were so kind and even gave her a friend for Pooh.

The procedure went well.She did have some seizure activity,but they prepared for it.She went straight to P.T. after the appointment and she just loved the gal that is giving her therapy.We started noticing her pain lessening with the nerve blocks and she did so well.I started to see a lot more smiles out of her and we were even able to go out to lunch a couple of times and the movies.
We saw How to train your dragon 3 and Five feet apart.

Ariel was doing so well and then another group of lesions formed causing burning and pain.

To make her more comfortable I ended up doing a room remodel for her.Complete with a larger bed and frame and new bedding.

 

 

 She also continued doing P.T. She had a really bad bought of seizures,so ended up having to go in her wheelchair.

 The entire month it seemed we were either at the doctors or on the phone with them.It has been so tiring and frustrating.Not to mention feeling terrible that our girl is just in so much pain and so miserable.Winter is one of my least favorite times of year it just makes me sort of blue.We ended up having some sunny pretty days.It was crazy snow one week and 80 degrees the next.I took Michael out,since he's so often on the back burner due to all the care his siblings require.So we went out to Mexican food and walked around the marina and then went for ice cream.It was a nice break.

The next day Ariel had her second set of nerve blocks.It was a facility closer to home,but much smaller.She once again did great and they've really helped her.

After that I came home and had to take Daniel to urgent care.His asthma was so bad.We spent five hours there.He got steroids and breathing treatments.

 Unfortunately her next set isn't until the 15th we are hoping for a cancellation so she can get seen sooner.Other than trying to find the best treatment for our girl not much going on.I'm looking forward to nicer warmer weather and enjoying some sunshine.Maybe taking Ariel to see Dumbo or something and taking some walks with the guys.