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.