Happy Halloween!

Happy Halloween Everyone! Ellie was a fairy for Halloween this year. Her favorite book is a counting book about fairies from Christian so we got her a fairy costume. She has worn some part of the costume everyday since we bought it.
The pictures are a mix of the Halloween parade at the town hall on Monday and tonight.





This was her first Halloween outside of the hospital and I have to say this one was much more fun. But that is mainly because she is older. She really got the whole trick or treating thing. She was running from house to house right up to people's doors and ringing their doorbells.
She said "Hi" to all the kids and took way more than her share of candy. We let her suck the sour stuff off of a sour patch kid and that is all she got.


She had a great time, we(her uncle Fred and I) made it to about 8 houses and then she came back home to help answer the door. We took off her dress so she could eat dinner and this is what she wanted to wear for the rest of the night.There were a ton of trick or treaters out tonight and when we were out there were no cars. The police were all on bikes and would stop by and say hi to the kids. All in all it was a very good Halloween the only thing that would have made it better was Gib. Ellie went to bed around 9pm so hopefully she will sleep late tomorrow.

Pedi appointment

Ellie had her 18 month pediatrician appointment today. She got a general well baby check up and her vaccinations. Dr. Lebel was very impressed with Ellie's progress. She is in the 70th percentile for weight, greater than 75 th percentile for height and of course way off the charts for head circumference. The Doctor was still not concerned with Ellie's huge melon, I guess big head=big brains.

We had a good weekend and Ellie really enjoyed the rainy weather.

The only sad part of the visit was that the doctor said that because Ellie has caught a cold the past 2 times she has been to EI playgroup she has to drop out. There are just too many colds that go around in the winter for Ellie to be around other kids.
I really liked that Ellie got to spend time with other kids but I understand that it is just not worth the risk. I think it was just wishful thinking on my part to think that her immune system could handle it in the first place. So, we will try to plan more small play groups here and Karlene and I will just have to get really creative with her play time.

Off the grid

Tomorrow I have to go to Orlando for the week for work.

Not the good mouse part of Orlando but the 'Vegas without the vice' part near the enormous convention center. Lots of family friendly budget neon with nothing of any real value.

I am not very excited to go and even less excited to leave home that is just now starting to feel like we have been here forever. But I was asked to go and talk about ocean conservation to the SCUBA divers of the world so off I go to man a table, fake small talk with 100 people a day and eat lousy meals from a variety of chains.

I have asked Abby to post updates and pictures for me every day so the added bonus will be lots of fun pictures of Ellie for everyone, I hope.

On the plus side, for me at least, is that I get a four nights sleep away from the beeping pumps and scheduled tasks. I usually don't sleep well in hotels and will probably miss the beeps, sort of like the Shawshank Redemtion when Red can't live away from the noise of prison.

On another work note, I made in into the Globe this weekend.

Yep, that's my day job.

3 Pounds

We went in for clinic this Thursday for a general check up and progress report. Guess what? Eating foods that are high in calories and fat make you gain weight. In one month Ellie gained 3 pounds and grew 1.75 inches. You should see her little legs, they have fat on them!

The result of this weight gain, is that she gets to continue eating like she is but she also gets another night of PN removed and replaced with D10. So, now she has 4 nights of PN and Omegaven (white gold) and 3 of D10. We tried this a month ago and she didn't gain any weight. But with her new weight gainer diet that is working on her and sadly me too, she should be okay.

The short bowel team was also very excited by her progress and how well she is handling it when we plug her ostomy. The results came back from the upper GI with large bowel follow through and everything still looks good. The report did mention that the bowel was very slightly more dilated than it was in March but much less than it was in October of 2006, before she had her ostomy. They also mentioned that there were no stagnant areas in the bowel. It was also noted that a transit time of 2 and half hours is good. It was very nice to read the report and to hear how excited the team was about the results.

We do like the Short Bowel team but we will wait a week and a half until we talk to Dr Jennings to see what the report really means and what our next step is from here. I do have to say that it was nice to go into clinic and have everyone be so excited by her progress.

All in all she is doing well with the ostomy. She is staying hydrated and continuing to grow, so if we have to keep the ostomy for a while, it would not a bad thing. Ellie handled the trip well and put on her magic show for the team. She takes a toy and hides it in her shirt or behind her and then says "where did it go?" (ok she doesn't say it with words but with hand gestures and shrugging of her shoulders and a "Hu") Then after a second or two she makes the toy reappear and says "TAH DAH." (this she actually does say)

She was very tired when we got home, but still put on a show for us as she settling in for sleep while Gib put together her PN, as you can see below.
Ellie with 3, yes 3 binkies in her mouth. Her eyes are closed because she is giggling too much to keep them open.

A day trip to the Inn

This afternoon was Ellie's long-anticipated GI study at Children's to assess the progress that her bowel has made and how functional the connection between her small bowel and colon is when the plug is in place. This will give us an idea of how far along she is and an idea of when we might think about scheduling her next surgery to reconnect her bowel and get rid of the ostomy.

Ellie was her charming self for the staff in radiology and she had lot of X-ray pictures taken of her bowels. I asked the radiology tech for the running total of 'belly films' that Ellie has had so far and she couldn't tell me. I am guessing that it has to be pushing 100 so far. Oh her poor guts.

The good part of today's study was getting time to wander around with Ellie between the time lapse pictures. all told it took 4 1/2 hours to take the full set of pictures and watch the barium go down her gut. What are you looking at? This is a KUB x-ray taken 2 hours and 20 minutes after the barium was injected into her stomach via her G-tube. The sections of bowel that have feathery edges are small bowel and bowel that has more lumpy edges is large bowel. The three round dots that are in the middle are the snaps from the back of her onesie, oops! In this shot the brightest or whitest parts are the large bowel because that is where most of the barium has moved to during the two hours and you can't really see her stomach because it is empty. This is good.

It has been a long time since we spent that much time at Children's and Ellie is a much different kid than she was the last time we made the rounds. She was especially fond of the garden in the middle of the hospital. the same garden that we took her for walks when she was tiny are now a lot more fun:

Sign? What sign? Oh that one? Isn't this a Children's hospital?

What a silly sign.

I bet I can take that with me as a souvenir.

We won't hear the interpreted results of the study for a few days but the early signs are that she still has some dilation in her small bowel but things are moving through. We will wait to discuss it further with her surgeon when we see him in early November boefore coming up with a plan for next steps.

In the meantime we will appreciate our time away from the Longwood Bar and Grill (Children's). Today's trip made us both realize that when we go back we will have a much different little girl with us and our stay may not be as smooth as it was when Ellie was an infant.

It’s small world

One of the strangest thing that has happened over the last 18 months for us is the way that this blog (that was honestly started to save me the hassle of adding individual emails to a long list of updates) has become a tool for other families with short bowel kids.

We get emails at least once a week from parents who are making the tough choices that we made just after Ellie was born and have been told more than once that families have even gone so far as printing out the whole thing to read during their time in the NICU.

It is really overwhelming for Abby and I to think about this.

Abby has an encyclopedic knowledge of these kids and can tell you right now how much bowel so and so has and what surgery they have had. But even though we know these kids remotely it is very rare that we have gotten the chance to meet these folks that we have emailed or even talked to on the phone.

Today took a weird twist on this. Oddly, it brought in my Mom and a baby with short bowel from Maine.

Thursday I got an email from a grandmother of a baby with short bowel from central Maine. The family is making the tough choice about where they want their baby treated and wanted some advice from us about how we made the choice to come to Boston. As we do for everyone that asks for help, I offered the grandmother our home phone number and cell numbers to call to talk or call when things get scary, even at 2 AM. The grandmother returned her phone number in Maine and I promptly googled the number and found out that it is the same town where my mom grew up in central Maine.

Since this was a grandmother, I thought that she might benefit from my Mom’s view on things and sent her my parent’s phone number. Parent to parent is one thing but my mom can tell it from Gramma’s point of view as she sees it without any filters.

Tonight I got a call from my mom.

It turns out that the two grandmothers are exactly the same age and would have graduated from high school together if one had stayed in town longer and the other had come earlier. In the course of my mom doling out advice and opinion about Ellie’s story, it turns out they knew the same people in town and spent an hour and half having a phone reunion that was all started with two short bowel babies.

Odd.

What is even stranger is that in the course of printing and reading Ellie’s blog, the other grandmother saw the picture of my grandmother holding Ellie last spring: And she recognized her recognized her. 55 some odd years after my grandmother moved away from Maine.

I think that they may be another family that we meet in person, either if they come to Boston or at the children’s hospital in Maine where my mom has offered to go and rock the baby in the NICU if the parents can’t be there.

It still makes me queasy to think about those first few days. If sharing our girl makes it even a little bit easier to get through those crappy days then I am glad that we have her up there to show folks that short bowel is a lot better than you might imagine. In fact, tubes and all, it is quite a lot of fun.

Open house at the Firehouse

This past weekend there was an open house at the Wayland Firehouse. So we loaded the little girl up and took her to see some really big red trucks. She had a great time driving the biggest fire engine and rode shotgun while another little boy drove the ladder truck. Ok so the trucks didn't really go anywhere, but Ellie sure was driving somewhere.We also got the opportunity to put Ellie in the back of an ambulance and let her explore and have some fun. For a while now we have wanted Ellie to have the chance to familiarize herself with the back of an ambulance and see it during a fun time. The goal being that if she ever saw it again, it wouldn't be as scary, hopefully.

When we moved we had to call the town Emergency Services to get Ellie on the emergency priority list for Wayland. Both Gib and I had some long talks with the emergency personnel to explain her status and medical history. The call would be made to the EMS if something happened and we needed help immediately, if there was too much traffic for us to drive her in to CHB ourselves (too much traffic in Boston?? Never!) or if Karlene needed to take her in to CHB and we were not home. Sadly Karlene is not permitted by her nursing company to drive Ellie anywhere, so she would have to call the EMS.
Ellie had a great time, and of course her slacker parents forgot to bring the camera, oops. But she did get this great hat that she then wore for most of the day. Both Gib and I struggled with the with the fact that all the other parents were there just to give their kids a chance to play with the big trucks and pretend they were Firefighters, we were there to prep our child for a possible future very scary day. We still get a bit choked up when we see an AMR ambulance with it's lights on, it still reminds us way to much of the long trip up from Yale.

Message from Ellie

Ellie's aunt Beth had her tonsils removed last week. Ellie wanted to sent a message her way to help her feel better. She only ate two markers while making this sign.

Mmm....Fritos...

Doctors orders. Honestly.

Asparagus!

The feeding experts and the nutritionists have been telling us that with a few exceptions for peanuts and milk we should be offering Ellie what we eat to get her to move on from jars of baby food as the staple of her oral diet to 'real' food. We are a bit hesitant to put this to the test but have been getting more adventurous in the last few weeks.

I think that our bravery and success comes from the fact that since we moved into the new house we have followed the feeding experts advice and gotten into a very normal pattern of eating as family every night. Now we can offer her food from our plates to play with, touch, feel, fling on the floor, feed to Gus and finally eat.

Most of the time the food ends up everywhere but in her mouth. They tell us that this is all good and part of the overall eating experience.

Then there are foods that she absolutely loves from the git go. Avocados were a big hit and yesterday we learned that Ellie loves asparagus (with a bit of salt, of course). She picks up the spear, sticks it in her mouth and chews until it gets to the stringy part:

Double Fisted Asparagus

Avocados and asparagus. Two foods that I didn't like until I was in college and she eats them as fast as we can get them to her. go figure.


Oh and to answer your burning question about her new vegetable choice: Yes kids with Short Gut get asparagus pee just like everyone else...