Our new van is here!  I cannot explain how much this will change our lives (once we recover from the wallet shock).  I have a feeling I am going to wonder how we ever managed without it.  The van arrived on Friday and we took if for a family spin on Saturday morning.  It's a Dodge Grand Caravan with a side entry manual ramp.  We wanted a manual ramp (rather than an electric ramp and a kneeling van) because that is one less thing to break.  Considering the place we bought the van is 3 hours away, this was a good move.  Although I would have preferred a Honda or Toyota, Dodge is the only car make that has the side entry manual ramp.  We could have gotten a Toyota with a rear entry manual ramp, but we didn't like the configuration of seats with that conversion.  Oh, well. 

Here's what it looks like when you open the door:

Then you just pull down the ramp.

There are two rows where you can anchor her chair with the tie-downs.  There is also a seat belt connector.  You'll notice that the floor of the van is lowered (look at the base of the other slider door).  I want to figure out a better solution for protecting the floor of the van from dirty/slushy/ snowy wheelchair wheels.  It's currently a carpet with the pre-conversion floor mats.  I also have a seat cover on order for the back seat.  The color of the seats is just too light for Hurricane Seamus and Hairball Josie.  For now, a beach towel is doing the trick. 

Look out, world!  Here we come!

Eve and PaPa

Eve petting JoJo

Seamus and Grammie

Eve's new haircut

Seamus has begun hugging back.  He gives the cutest squeezes around the neck.  He's starting to say a few words that are almost totally unintelligible.  He says "doggie" and "din din" and today he said "Boo!"  He's a happy kid.  He's also incredibly curious.  He watches everything intently.  What a little sponge.  He'll be 15 months this week. 

We seem to be doing pretty well.

Last week, Eve continued to have issues with retching.  Last Sunday was particularly bad.  So, the GI sent us to Springfield to have a tube study done (radioactive dye through tubes to make sure they are functioning) and to meet with a pediatric surgeon to talk about a j-tube surgery.  The tube study showed everything working fine.  The surgeon said no to the surgery.  He said it should be a last resort thing and that it will open up a bunch of things that could go wrong.  He felt there were other studies that could be done and medications that could be prescribed before doing that surgery.  So, he sent us back to the GI.

Thursday we went back to Springfield to Shriner's Hospital.  We had made an appointment with the orthopedist to talk about her dislocated hips. Since we made the appointment (August), her hips have become the least of our concerns.  Since the way to fix this would be surgery, there is nothing we can really do.  The doctor and I agree that there is no sense in putting her through that extreme pain, especially when her comfort and quality of life is paramount for us.  That was a hard appointment to be at.  It's tough when a doctor just strokes your child's cheek and looks at her with sadness.

I finally was able to talk to the GI late Friday.  I asked him if we could reduce her feeding rate.  I truly believe that he was pushing her too much.  There's no sense in getting so many calories that she spends her days retching if her body can't handle it.  So we backed off the rate and so far so good.  She isn't retching (other than from too much mucous in the morning) and is gagging much less.  The next thing we are going to do is get her on an elemental formula.  It's a formula that is broken down and easier to digest.  The GI didn't think it would work, but thought there was no harm in trying it (it was my suggestion).  Finally, he wrote a prescription for an antispasmodic to help with the retching.  We will change one thing at a time, but I have the medication on hand if I need it.  If Eve does well with the elemental formula, we will try to ramp up the feeding rate a bit.

In the meantime, Eve had another one of those intense pain episodes last Wednesday night.  She woke up moaning and crying in pain.  It was so sad.  We gave her extra valium and it really didn't seem to help.  Eventually, it passed and she quietly moaned for the next hour or so.  She got more (scheduled) valium and slept for a bit and woke up screaming at 12:30am.  We called the Neurologist and he had us give her even more valium and some Tylenol.  We then talked about how our goal is to keep her comfortable.  So, the next time this happens, we are moving to morphine.  The neuro is having our pediatrician manage the morphine (we need to pick up the script in person and this way she can monitor Eve because she is local).  We met with her on Monday and talked about this.  So, for now, she will get the tiniest amount (short acting) as needed to help with these episodes.  Eventually, if things get really bad, she may be on a scheduled longer-acting dose. Eve has fine since the last episode. This seems to happen every 3-4 weeks. 

In other news, we should be getting our new wheelchair van at the end of the week (fingers crossed)!  This will be totally life changing.  Totally. 

So, I am feeling a bit more comfortable and stable.  Eve has been smiling and laughing.  Today she was in a parade at school dressed as Curious George and had a blast.  Her top right tooth is loose.

I keep meaning to post pictures, but the time slips away from me. 

Eve went to the GI last week for a follow-up.  She has put on 3lbs since her hospital stay!  However, she is still retching daily.  He wanted her to have another series of x-rays (which were normal) and he tried her on a new medicine to coat her stomach in case it is the tube from g-j that is irritating her. 
He said to give it about 3 days and then touch base with him.  In the meantime, Eve vomited at school on Friday and spent much of Sunday retching and gagging.  I actually called the on-call GI because I was so worried.  He called in a new Rx that seemed to help a bit.  This morning she gagged a bit and seemed to have a rough day at school.  Some possible pain issues/discomfort/more gagging and retching/and serious zoning out. 

I was able to talk to the GI today.  He said that obviously the first med from last week is not working, so we discontinue that.  He wants her to have a g-j tube study tomorrow (they insert dye in the tube to make sure it's working correctly).  He said that in his heart of hearts he believes this won't show anything.  But it needs to be done prior to the next step he is recommending - surgery to place a j-tube.  So, the g-tube will go back to being a mic-key button (held in place by a small balloon) so we can give her meds through her stomach.  The j-tube will now be surgically placed right into her intestines (rather than have a tube snake through her stomach).  We are also going for a surgery consult tomorrow. 

I do not believe that is the problem, but I am totally willing to explore all options.  While I do not look forward to subjecting our child to surgery, there is a possibility it could help her.  I'd hate to get to a point where I wondered if we did everything we could to make her comfortable.  I don't know where we will go from here if this doesn't work.  I really don't know. 

In the meantime, we are also headed to Shriner's hospital this week to have her hips looked at.  This appointment was made months ago when her hips and legs seemed like her biggest problem.  I can't explain what it's like to have your worry pulled in so many different directions. 

Eve has been doing pretty well.  We've had some constipation, and some night time wakings, but nothing crazy.  We go for her followup GI appointment tomorrow.

I can definitely notice the difference that nutrition makes.  She's regained the energy to whine and her hair isn't falling out as much.  :)

Grammie and PaPa are here visiting until tomorrow.  After they leave I'll post some pictures.  The kids are having a ball with their grandparents.  Eve chose hanging out with PaPa over helping mommy bake cupcakes.  I can't say I blame her.  She sees me all the time. 

Monday night was a really rough night.  Eve was up at 8:30pm in intense pain.  Her knees were drawn up to her chest, her fists were clenched and her arms with tight at her sides with elbows bent.  She was crying out and having lots of tongue thrusts.  When Jim picked her up, it was like picking up a stone statue - she didn't move.  It was too early for more valium, so we didn't know what to do.  I called the Pediatric Palliative care program and the VNA sent a nurse out.  This pain episode lasted about 10 minutes before she finally relaxed.  The nurse checked her vitals and we talked to the pediatrician on call.  He wanted us to consider going to Baystate, but left the decision up to us.  While the nurse was there, Eve had a second episode, but it wasn't as bad as the first and only lasted 2-3 minutes.  When the nurse left, I packed a bag just in case things didn't get any better and figured I'd give Eve valium when she was due (11pm).  At 10:45, she woke up with another episode.  I gave her the Valium a little early and she relaxed after that and slept the rest of the night. 

I put in a call to the neurologist yesterday to talk about it.  It turns out there is a neuro on call 24/7.  Next time I will remember that.  Anyhow, the doctor told me that people on Valium can develop a tolerance.  He's been very conservative with her dose, and told me to keep the dose as it is and to give her an additional 1ml if needed in a situation like that.  If it keeps happening, we can talk about changing her maintenance dose.  We have a long way to go before we reach her max dosage for her size.  Right now she gets less than a third of the max dose.  Keeping her comfortable is a common objective. 

Eve did well this weekend.  No gagging.  Perhaps moving the prilosec worked.  Yesterday I increased her feeding rate to 52ml/hour.

This morning the school nurse called twice.   Eve was retching at school twice.  The first time with much effort and she got sweaty and brought up some saliva.  The second time wasn't as bad.  I had the nurse pause her feedings for 2 hours to give her a break.  I put in a call to the GI and am waiting to hear back.

I just don't know what to do.  I also am afraid to get comfortable.  It seems as though every time I think, "Ok, we are stable.  Things are quiet and going well.  I can breathe and start to plan for future stuff," she has another episode or setback.  And I feel like such an idiot calling the GI office.  They are probably so sick of me calling.  It's just that vomiting for Eve is not the same as for a regular kid.  It could be indicative of a much more serious problem. 

Update:
GI called back.  He wants to increase the Prilosec to twice a day (morning and night) and see what that does.  I am to call on Thursday.  I am also to keep giving her the feeds and keep it at the 52ml.  I hope this works.