Merry Christmas!

Christmas with the Longos

Photos from October

the dance marathon continues

He says he's "feeling fly like a cheese stick."

Warrior Dance

He calls this his "Warrior Dance."

Eve has been doing pretty well since our ER visit.  Tonight, however, she had a very bad pain episode.  The worst we've ever seen.  She was crying out so loudly; moaning and keening in pain.  Her ankles were crossed and her knees pulled up tight and elbows bent.  When I gently uncrossed her ankles, she cried out like I broke her leg and her body shook.  I vented her, gave her morphine, and rubbed her legs.  I asked her if she wanted me to hold her and she emphatically said "ah" (yes).  I cradled her in my lap and she slowly relaxed.

It's times like these when we realized how much she needs us.  In that moment of her yelling in pain, I wouldn't have been surprised if we needed to take her to the hospital.  Thank God we have the morphine to give her.  Thank God she seemed to relax.  My heart aches to see her in such pain.  Our goal in managing Eve's disease is to keep her comfortable.  This is getting harder and harder.  If you pray for my baby, please pray for her comfort. 

cookie problem

Usually, I stick to my guns better than this.  However, I was powerless in the face of a cookie problem.

Eve is doing great

It's been a week since our ER visit and Eve is totally back to normal.  I have since spoken with her pediatrician, neurologist, and physiatrist.  We are going to keep her at the reduced rate of Baclofen for a few days and then slowly increase again.  Both the neuro and physiatrist (Dr. N) felt that while it could have been a medication thing, the timing was a little weird for it to be that.  They didn't rule it out, but didn't want to jump to an easy conclusion either.  Dr. N asked if they checked her for pneumonia (they did not).  She was surprised by this, as Eve was there for respiratory issues.  Because of Eve's daily gagging, aspiration is a concern.  Next time I will be sure to mention this so that  chest xray is done. 

Anyhow, she is doing great and we are back to normal at our house. 

Ambulance and ER

 Yesterday was a crazy day.  Eve was in pain in the morning, so I gave her a dose of morphine.  On Tuesday, she was in the same amount of pain and I did not give her the morphine and she spent the whole day in the nurse's office in pain.  So, I decided to try to prevent that.  The school was in contact with me in the morning saying she was in the nurse's office sleeping.  But she was grimacing in her sleep and looked uncomfortable.  That was strange, but because she had the morphine I wasn't to worried.  Just after noon, the nurse contacted me to let me know the her respiration rate was low (9-10 per minute).  She was also displaying a weird breathing pattern: two breaths, then holding it for 6 seconds and repeating.  We agreed I would call the doctor to see what they thought.  Then Eve was given her regular meds.  I talked to the pediatric nurse and she suggested that I go to the school to look at Eve to see what I thought.  As soon as I got there it was clear that Eve was not okay.  I decided to take her to the ER.  She looked totally out of it.  She looked incredibly sleepy and when her eyes were open she didn't look lucid.  The pausing between breaths was freaky and looked like end of life breathing.  So, we got her into her wheelchair so I could take her to the hospital.  However, she was unable to maintain her airway while sitting up.  She struggled to breathe, so we immediately got her out of the chair and called the ambulance.  Super scary.  They came in 2 minutes (literally) and got her out of there so fast.  Her oxygen level dropped to 88 on the ride to the hospital, so they gave her oxygen which helped.  Once at the ER, it was a swarm of activity.  She had a CT scan of her brain, bloodwork, and urinalysis.  Everything came back normal.  However, she clearly wasn't herself.  While they tried to get the catheter in to get blood, she barely reacted.  They were poking around and she wasn't even pulling her arm away.  It was so unusual for her.  She ordinarily would be totally freaked out and looking all around.  She could barely keep her eyes open. Her breathing got better slowly.  She slowly became more alert.  After talking to the pediatrician and neurologist that were on call, the ER doc thought that maybe this was a reaction to the recent increase in Baclofen.  Perhaps the baclofen and valium were too much for her.  He wants us to decrease our baclofen that we give her and "go easy on the morphine."  She's been on this dose of baclofen for 8 days and I had given her morphine earlier in the week without this reaction.  I just don't know.  She had morphine and then her normal valium in the morning (not at the same time), but didn't exhibit the slow respiration for another 4.5 hours. 

When it was clear they were not going to do any more tests or be able to make any definitive suggestions, I asked if they could please take the oxygen off of her to be sure she was okay without it.  They did and she seemed okay.  The longer we were there, the more like herself she became.  She even laughed a bit.  I then asked if we could please get her in her wheelchair to be sure she could maintain her airway for the ride home before they discharged her.  She seemed fine in her wheelchair and I was comfortable going home.  She slept very well last night and seems like herself this morning.  It makes me feel like yesterday was a bad dream.  So, maybe there is something to this med reaction theory.  Who knows.

One other thing I want to mention is how amazing our community is and especially Eve's school.  The school nurse rode in the ambulance with Eve and her one-on-one came down as well.  The principal then showed up.  It was a party in the ER.  My phone was blowing up with texts and emails from people offering help.  Then, the Special Ed director even showed up and brought me food.  It is a testament to not only how well loved Eve is, but how dedicated and caring these folks are.  Our school is incredible. 

  This is her at discharge.  Too tired to hold her head up for the picture. 

We are resting at home today and staying cozy.  She is non-stop yawning, but is alert and smiles easily. 

November happenings

In the middle of November, we had a little bit of snow.  It made for some lovely images, because some of the trees hadn't finished dropping their fall color. 

Then, we celebrated Jim's birthday.  Naturally, everyone was involved.

We went to our local Holiday Market to buy some produce and locally raised pork.  While we were there, Seamus decided to get his face painted.  He was sooooo serious while it was being done.  And he was soooooo upset when it was washed off.  

In case you're wondering, it's a bear.  Oh yeah, at preschool they came up with their own Native American names.  He choose growling bear. 

My parents came up for Thanksgiving, which was a huge help.  Jim was working the two days after Thanksgiving, so it was so nice to have help with the kids.  Also, we had gotten 11 inches of snow the day before Thanksgiving, so they were able to stay in the house with Eve while I took Seamus out to play in the snow. 

We lost a chunk of our fence during the storm.  Here is Seamus, insisting he is "camouflaged." Can you spot him?  Yeah, me too.  He needs to work on that. 

Get off the lawn!

Halloween

My love

This was a fun Halloween.  Seamus got really into it.  Orange was the color of the month and he happily pointed out all of the orange he saw - in Spanish!  ("Naranja!!)

Can you guess which pumpkin Seamus designed?

Did you know that dogs make the best seats?

So do wheelchair footplates.

Sibs

Seamus wanted to be Bigfoot for Halloween.  We may or may not have an adult in the house who believes such creatures possibly exist.  (Hint: it's not me)  Consequently, we have a little person who also loves Bigfoot.  Did you know that Bigfoot costumes for 3 year olds are really hard to find?  If you do find them, they are wicked expensive.  Soooooo......I made one.  It came out so much better than I expected.  I am not in a rush to sew anything with fur anytime soon, though.  This thing shed mountains with every cut.  I was eating and breathing fuzz and very unhappy about it.  But, it came out great and he just loves it.  Here he is at school, striking a pose:

He told everyone he was a nice Bigfoot, not a mean one.

Fortunately, the weather was much better than last year, so we headed out to Trick or Treat.  We bundled Eve up, but she was dressed as Peppa Pig.  She was so very excited, she did NOT stop squealing as we got ready to leave.  I was worried she would get hoarse. 

We drove to a neighborhood that is more flat than ours (and where the kids have friends).  Just as we were getting out of the van, we ran into one family I wanted to be SURE to see.  Lots of laughter and happiness ensued.  Here is a photo taken of us (Thanks, Colleen!!):

After we saw the Martins, we immediately ran into some of Seamus' friends from school.  We hooked up with them and hit up the houses for candy.  Seamus and his friend from school held hands nearly the whole time.  My heart melted into an ooey gooey puddle.  He kept calling for her after each house. 

So that was the great part.  Unfortunately, it wasn't a successful night for Eve.  She got bored and very cold.  Upon later reflection, we wonder if she was disappointed that she didn't go up to the houses for candy.  The houses all have steps and she can't eat candy, so we had decided to have her hang back, but enjoy the activity and seeing her friends.  We cut the Trick or Treating a little short because we noticed she was shivering.  By the time we got home, she was in a full blown pain episode.  It was a bad one.  She made that keening sound that I haven't heard in a while.  I gave her morphine and even the booster dose 15 minutes later.  She didn't want us  to leave her.  We made sure she was tucked in bed as comfortably as possible and left the room to allow her to rest (we thought our presence was keeping her up).  I checked on her about 20 minutes later (after being sure all was quiet on the monitor) and she was asleep.  We think that being cold can precipitate these episodes (but that that's not the only cause).  This morning, she seems a little out of it.  She keeps dozing off.  It must have taken a lot out of her.  Next year, she will be handing out candy with me at our house.  I told her that we will both dress up and get to see the kids from our neighborhood.  I imagine that Jim and Seamus will hit up the houses in our neighborhood (the hill and lack of sidewalks won't be as big of a big deal if you're not pushing a wheelchair).  I had a bit of a pity party last night after the kids were settled.  It's tough to watch your kid struggle. But it was great to see how happy Seamus was.  Bittersweet.