first steps

Seamus has begun taking his first steps.  His record is about 4 steps at my parents' house.  He is definitely not walking yet, but is on the cusp!

endoscopy

Today, Eve had her endoscopy at Baystate.  It went very smoothly.  I was amazed at how well Eve did.  She was great in the car and great at the hospital.  Have I mentioned how wonderful Prozac is?  It has changed our lives.  Eve was soooo much more relaxed and not scared.  The anesthesiologist said she did better than the 13 year old before her.    Anyhow, the results showed that there is no anatomical reason for her to stop eating (as expected).  She does have mild chronic GERD (no surprise) and her g-tube was placed in a perfect location (Also no surprise.  Go, Dr. Saripkin and Atlanta Children's Hospital!).  So, she can go back on Prilosec and we are going to look into overnight feeds using a pump.  Speaking of feeds, we are still waiting for insurance to approve the formula.  I've been paying out of pocket and it's getting old. 

still knocked out

waking up

The staff at Baystate was great.  I had them laughing in the procedure room.  They let me go in with Eve as she was put to sleep with the gas mask.  This was the only time she was upset.  She looked so pitiful and was crying underneath the mask.  But her little cries were muffled by the mask and started to get weak as she drifted off and her eyes rolled back.  I started laughing at her and apparently that is not the usual reaction of a parent.  Oh well.  It was funny (and I may have been nervous).  Later, the anesthesiologist said that it seemed as though I was seeing the big picture and she wished more parents had that attitude. 

Eve came out of anesthesia a little rough.  She had trouble clearing her airway a bit and was slow to wake up.  She also was trembling quite a bit.  She finally seemed to get it together when I put her in her wheelchair and put her on the phone with Jim.  She was an angel for the rest of the day. 

So, one procedure down, and another to go.  The next one is in Boston next month.  Eve is having full urodynamic testing done.  That one will be a big deal and Jim and I will go together. 

 Two weekends ago, we went on a newt hunt at The Clark.  Eve had made a bug hut at summer school and the newts were plentiful.  We lost count after we got to 20.   

We've been researching wheelchair vans because it's definitely time to get one.  During our research we found out we could rent a wheelchair van.  It had been 1.5 years since we've been to NJ, so we took a trip last weekend.   We couldn't have done it without the van.  It was great.  We saw my parents' new house and even escaped for a dinner date.  Jim's brother also made it up to see us. 

Oma and Seamus

Eve and Scott

The trip was a whirlwind - about 48 hours in total, but it was great.  We're looking forward to future, longer trips, during which we can visit with more people.

As for the van, I'm making progress.  We've decided what kind of van we want (and don't want).  We don't want the fanciest conversion.  The most expensive conversion (roughly 22K) involves and automatic ramp that either folds out or slides out from underneath the floor.  The whole van then kneels to reduce the angle of the ramp.  Fancy, but totally unnecessary for us.  Eve will never have to push her self up the ramp, so there is no need for those features.  More importantly, those features are something that will break and then we'll be up the proverbial creek since the dealer that we will purchase from is 2.5 hours away.  I say will because even our rental had problems with the ramp and kneeling.  No thank you.  So the van that we are planning to get is called a Braun Companion Van.  This is a side entry van with a manual ramp.   It suits us perfectly.  I'm now working on funding.  I think it's going to work pretty well.  Without getting into too many details, we will apply for a low interest loan through Easter Seals (specifically for wheelchair van purchases).  Then we will pursue funding from the Knights of Columbus and the Catastrophic Illness in Children Fund.  Between that and the sale of my CRV, we should have the van nearly paid for (if not totally paid for).  This is exciting.  Ever since last weekend, I've been dreaming of the new van.  I keep thinking how much easier life will be.  It was like tasting the forbidden fruit!  I didn't know it existed, and now I can't imagine living without it. 

Seamus has been a real sweetheart lately.  He will still body slam you, but he also likes to give kisses and hugs.  His hugs are literal face plants on your chest, but the sentiment is there.  Kisses are adorable, but disgusting.  He puckers his lips and presses them against yours.  The problem is, you get smeared with drool.  It's worth the price. 

Giving JoJo love

Eve has found a nice comfortable resting place on the couch.  Doesn't she look comfortable?? 

We've been pretty worried about her lately.  She barely eats anymore and we're waiting for insurance to approve the formula for her gtube.  In the meantime, we've been giving her Carnation Instant Breakfast through her tube when we don't think she's eaten even close to enough (which has been 4 of the last 5 meals).  I'm going to call the GI tomorrow to ask what we should do.  I bet there is ensure or some other formula in the grocery store.  Thank God for the gtube, or this kid would be starving to death.  Literally.

Also, do you notice the small dot on the side of her right knee?  You might need to click on the picture to blow it up. That's a pressure sore.  She can't move around during the night and consequently is at risk for these sores (from legs pressing on the bed or each other).  This one showed up and has lasted a few days (it's still there, but is much better).  Since then we've been placing a folded up blanked in between her legs to prevent more.  She's been waking nearly every night (5 of the last 6) needing at least one dose of muscle relaxer because one leg or the other is jacked up and stuck.  I think Jim and I are pretty stunned by her decline.

She had a hip xray on Friday and we compared it to the xrays taken last year at Shriner's.  Now the right hip is dislocated as well as the left. It doesn't seem to be bad enough to require surgery, though.  So, we seem to have left our plateau with her health.  I just hope we land on another one.