Thursday, July 31, 2008

Guess What we did yesterday!!!

Yes, a last year we did a post about how we have decided not to let Ellie swim. But.. now she is two and that central line is not going anywhere any time soon. So, let the girl swim! Yesterday we loaded up and when to my sister's house for a short swim.
It was not a decision that we came to easily. We have been debating the idea for about two months. We have let her wade in the ocean but we were still very careful that her central line never got wet. When I was at Oley last month, I was asking everyone and anyone that that had a central line what they did when they swim. And I got pretty much the same answer. Cover everything as best as you can, and then change the dressing and cap when you are done.

She never really swam but she did leave the steps and walk around with us. Next time we will do it during the hottest part of the day and bring lots and lots of toys.

We also checked with Children's before we attempted this, and they ok'ed it. With the right precautions for her line, she is allowed to swim in clean ocean water and in a private pool that we know the owner of, so we know that water is clean. My sister's pool fits that bill and Ellie had a blast, so we will be back.

Friday, July 25, 2008

RAIN and friends

For those of you in New England this is old news, but we have had a bit a rain this past week. Three days of never ending rain and thunder storms. We had to introduce Ellie to THUNDER and explain that we could not make it stop just because she asked. We explained that thunder was good because thunder meant that we would have puddles to jump in, one of Ellie's favorite past times. Below is a frame by frame of what we did for about a hour each of the three days.
We all had a very good time. Ellie and her best friend Ka (Karlene) got to even play in the mud. Ellie is still doing well. The new big girl bed is great, and a challenge. She is sleeping well, but I still am having nightmares of her getting out of bed, walking into our room and leaving her pumps and her CVL back in her room. Right now we have her pumps in backpacks at the foot of her bed, but we think we will either lower her IV pole and teacher her how to roll it or put her pumps in her shopping cart. For now we are hoping that we can convince her not to get out of bed without us. (I know, I know, Fat chance!)

Today we finally had some good weather and got a chance to see some friends from out of town. The Solomons flew in for clinic and stayed for a extended visit. We spent the afternoon at the aquarium and then had lunch in the Quincy Market area. It was a blast and really fun to get the kids together. I'm hoping that Ellie will have a strong base of short gut friends when she grows up. I hope that these kids will be her support system throughout her life. She and Zack got along great. They many long conversations, that only they understood.
Zack and Ellie at the aquarium
This is a picture of two very tired kids after lunch. We had a great time, and hope to do it again next time they are in town.

I leave you all with a picture. To those of you that know what she is touching... scary picture hu? You should have been there when she tried to kiss it.

Yeah it's fake, but it still gives me the willies.

Friday, July 18, 2008

Look at the big girl

We used the vacation as the end of our time with Ellie in a crib and went cold turkey when we got home with her newest fascination-

A Big Girl Bed!This has been in the works for a while now ever since Ellie started to show interest in climbing out of her crib. As soon as she started climbing Abby and I have had nightmares of Ellie jumping out of her crib but leaving her pumps on the wrong side of the crib. Putting the crib against the wall made things better but it was just time to get her into the next bed.

So now we are having entirely new nightmares about Ellie falling out of bed or deciding to go for a walk but leaving her pumps behind.

So far she has been great at staying in her bed for us and her pumps are off the pole in at the foot of her bed to make them more flexible but we know that this won't last for long.

So for now one or both of us jump whenever we hear her make a noise. Sort of like the first nights home with her.

Speaking of which, Tyler April, Ellie's cousin who was born May 23rd at 28 weeks (2 pounds 13.8 ounces), went home today just north of 5 1/2 pounds. Thinking of those first few nights at home makes me want to throw up a little bit. We know that Ben and Sharron will do well with him and that home will do well with him as well. Congratulations.

Thursday, July 17, 2008


Ellie had her first clinic appointment since March today and that was the common comment from every single doctor, nurse, and specialist that saw her or discussed her progress. Every single person that we met said this to us like we had won something or that we were at the end of something which seemed a bit weird to me. I wanted to stop and tell them that we aren't even close to the finish line even though she looks so good and is so happy and healthy.

The numbers:
  • She is still growing well 75th percentile for height and weight. her wardrobe of outgrown clothes told us this a long time ago but it is nice to hear it officially.
  • She has progressed on her formula and solid food eating . Right now her pump is set to 37 ml/hour and all told she gets just about a liter (1000 ml) of elecare each day. On top of that she eats three good meals a day and some snacks. This was all great news to the nutritionist and got a solid wow when reviewed Ellie's diet with us.
  • All of this means that we are losing a night of TPN next week and we are back to 4 nights a week of TPN and three of dextrose. We are keeping the increased volume in there for the summer to keep her hydrated but the calories will continue to be pared down.
  • Her labs all look good which means that her nutrition is good and she is well balanced. We like a well balanced kid.
What's next:
  • We are still waiting for the bowel motility study that was cancelled in May when Ellie got admitted with the gut bug. The Dr. who does the study is very busy and we got sent to the back of the line when she cancelled. We are going to push to get this done and gets some kind of an answer about why it takes glycerin to make her poop.
  • If all goes well witht he study (called manometry) we will probably think about reconnection sometime this fall. Yeah, yeah. heard that one before. No hurry here to get it done. we'd rather wait than rush into it and have to reverse course. We're getting good at ostomy changes anyway.
So the take home message is keep doing what we are doing and bring her back in a month or so to see about progressing towards more TPN-free nights.

I think that they just like seeing her dance down the hallway.

Saturday, July 12, 2008

Great White.

So we made it out to Martha's Vineyard and we are staying near south beach. Ellie has only been splashing in the one of the ponds, because we discovered that she is not a fan of big crashing waves. She says " no, no, no" and then points to the car and says " go car home, now." So tomorrow we will try a much calmer beach and see what she thinks.

We have been in the surf a few times and the beach we are staying at is the beach that they sited the Great White at two days ago. Yeah, a 20 foot great white and yes we have been in the water. As our friend Dan likes to say, "if you get eaten by a shark, then it was just your time to go."

This is the link to the story if you are interested.

I promise there will be pictures of Ellie in the water soon.

Tuesday, July 08, 2008

Happy 4th of July

Hello from Maine! ! We have been up here for over a week and we are having a great time. It has been really nice to have an nice extended visit to relax and spend time with family. Ellie has had a great time playing with her cousins and has been in the ocean twice so far. The first time we discovered she was fearless and was ready to swim to the next island. The second time we introduced her to some of the crabs and snails that live in the water. "More Crabs! More Crabs!" has become one of her favorite phrases. We have only been wading and she has been splashing, but we have not really been swimming. Gib and I are still chickens and are afraid of getting her cap and CVL dressing too wet. But we will be heading to another beach this weekend that will have clearer and warmer water, so we may try it again there. We had a great 4th of July, but Ellie was not crazy about the fire works. We lasted about 1 minute before she said "all done mommy, all done!" So we headed home. We will try them again next year, or not. But all in all this has been really nice break.This is also the first time we have spent more than a week away from home with Ellie. Our second week of medical supplies showed up today so we should be all set. During this trip we have had to do a dressing change and many cap changes away from the security of Ellie's room, which is our "clean room." But we are getting more and more comfortable with it, and Ellie is also more comfortable with our new routine that comes with a new location.

We are going home for a bit this week to unpack and repack and then we head out again to join my sister and her family on Martha's Vineyard for the weekend. After this we are home for a very long time, and we will have our first clinic visit in almost 2 months. We are really hoping they will be as impressed with Ellie's progress as we are.