Oley

Well, we are back from the Oley conference. It was great. We knew three other families that were there from Children's hospital. The first day we spent the morning in a large group meeting talking about the future medical advances in the area of short gut and for people on TPN. Then in the afternoon Gib and I split up and he went to a talk about Central line care and TPN and I went to one about pre and probiotics. (prebiotics=food for your good bacteria that you already have in your gut. probiotics=adding more good bacteria to your gut)

Gib's sister Beth came along to help with Ellie. Good thing. This was our alternative
Then we both went to a meeting about pediatric issues. It was great, they talked about things we had not really thought of yet. Like, potty training a short gut kid, Tooth and bone development, and puberty. It was eye opening for us, but also good because there were so many parents there and their short gut kids looked great and were running around looking like normal kids. They were just a bit skinnier and had a few tubes.

The only thing we did notice is that most of the kids that were there had lost their intestines when they were a bit older, not many kids were there that had lost some of their intestines at birth. But then we realized, we (the Omegaven families) are the new group at Oley. Now more and more infants are surviving into childhood because of Omegaven. So many of the meetings were very helpful, but they were all really directed at adults and older children. So now Oley has to recognise this new group that will only get bigger and bigger.

The second day the morning was a large meeting with every one. The guest speakers were Dr. Puder (Mark) and Dr. Gura (Kathy). They were there to talk about Omegaven. I think the message got through. When you say that Children's Hospital Boston used to lose 6-7 kids a year to TPN induced liver damage and now they the lose NONE. That Toronto hospital used to have a near 90-95% mortality rate of children with TPN induced liver damage. Now they have 0%. It is hard to ignore.

After that meeting we all went out for a picnic with four other short gut families, Mark, Kathy, and Denise (the Uber nurse).
Sorry that Gib is blocking out Mark, but he is there. This is from the left Charles and dad, Maggie and mom, Luke and mom, Ellie and dad, Caleb and dad and Kathy and Mark.
This is Gib and Ellie with Dr. Kathy Gura(discovered Omegaven) and Dr. Mark Puder(started and is currently running the Omegaven project). These are the people that are responsible for our happy, healthy baby girl. The only person missing is Dr. Jennings. This is Ellie and Luke on the swings together. It was Ellie's first time on a swing.
Ellie and Maggie playing peek-a-boo.
This is Luke and his mom with Charlie's mom and Charlie playing with Gib. Charlie is the first little boy that was put on Omegaven. They were willing to try anything to save his life. It had only been tested on mice before Charlie, and now he is four years old and his liver is doing better than mine.

If you look back at all the pictures in this post, you will notice that most of these cute kids have back packs on. That is what the whole conference was like. Halfway through the first meeting I realized that many of the adults had little back packs or fanny packs on. Many of the people there were on TPN almost all day and some were on G-tube feeds almost all day.

We had a great time an learned a ton. The biggest take home message we got, is that we are incredibly lucky to be at Children's Hospital Boston. Next week we are making an appointment to talk to Dr. Jennings about a bone density scan, leaky g-tubes, and starting pre and probiotics. Ellie passed out after the picnic. We were in the middle of emptying her ostomy when she fell asleep. Like her shirt?

Secret Club

This is a club that we didn't even know that we joined. It just seemed like we would be out shopping with Ellie one day, and some one would come up to us and say ,"Hey, nice pump." And just like that we were in. With just that one statement we would feel like we knew these people and they felt like they knew us. That we knew something that everyone else around us didn't, and that no one around us could understand unless they had lived thought what we had.


These people would be just about anywhere. From the lady who fit Ellie for her first pair of real shoes, a sales woman in Macy's, to a woman in a book store who chased us down to get a better look at Ellie's backpack. The woman in the book store caught up with us and first thing she did was whip out her own pump. I guess that was like our version of a secret hand shake. We stood in that book store and talked about life with tubes and all that comes with it. It was great.
So tomorrow we leave for the Cape where we are going to attend the national conference for the Oley foundation. The Oley foundation is for all people that live with tubes, IV or G-tube. Patients, parents, doctors, nurses and specialists from all over the country are coming to the conference. There are a bunch of lectures and then in the afternoons there are break out sessions when we get into smaller groups and have more personal discussions, with specialists and parents/patients, about the issues that concern us.

We are very excited for this conference not only because many other Omegaven families are going, or because Dr. Puder will be presenting, but because of all the other kids/adults that will be there with tubes. For three days Ellie will be normal. I don't even know if she will notice, but I really want Ellie to see all those other people with tubes. This meeting will be like a huge meeting of our secret club.

The subjects that they are covering are really interesting to us and we hope to gain some very valuable knowledge about things that we can try with Ellie. Gib and I have to admit that we do find that we are chickens when it comes to trying new things. Especially when she is doing well. But, we need to expand our knowledge because you never know, she could be doing better.

We will try to post while on the trip. If you are a short gut parent/patient and you have some questions you would like us to ask about at the conference please email them to me (Abby) and we will do the best we can. Gib's sister Beth is coming along to help out with Ellie so that we can attend as many meetings as possible.

On a side note, as we were packing today I had a bit of fun with Ellie's hair. It is getting very long and I just couldn't help myself. Check it out.Yup, Pigtails. After so many months of cute but bald Ellie, I was so happy to be finally be able to play with her hair. They didn't last long, she figured out how to remove them very quickly. But it was fun. She was in rare form tonight, I also got some video.

A week in Maine

We spent last week in Maine. I spent the days fighting to protect the fish populations in the Gulf of Maine and Ellie and Abby spent their days relaxing and visiting with family. Below is a picture of Ellie getting a feeling of what it is like to be on something that floats.

We didn't get to go on any boat rides this trip but we will next time. Notice her new shoes. They are Croc Mary Janes. This is the only picture that we have of the trip that doesn't include her cousins.

She had a great time playing with her cousins. Unfortunately the pictures aren't here. My brother John, her uncle, is paranoid about having his kids pictures on the internet.

It is funny, the kids didn't really treat Ellie any differently, it was the adults who cringed when any of the kids got close to Ellie. We just had to keep reminding them (the adults) that she isn't made of glass. She is tough, and likes to play, if she doesn't like something then she will let us know. The important thing to remember is that she doesn't realize that she is different yet, but if we treat her differently then she will start to pick up on it.

We had a blast in Maine, the only negative was that we left the charger for her feeding pump up there. We didn't realize it until this morning when the pump died. Thank goodness there is a good net work of short gut families here. We were able to borrow a charger from another family to get Ellie's pump working until ours comes back down from Maine. Oops.

Sorry we have neglected you.

We have been in Maine for the past week. I will post pictures from that trip soon but here are some pictures from the week before we left. Here is Ellie playing "fetch" with her boy.
After watching them play together I almost went out and bought Gus a huge chunk of steak for being such a good dog. But instead I took him for a swim in the pond. Here are some other shots of us in the yard.Ellie is doing well. She is now at 26 cc an hour with a total intake of milk around 625mls a day, (over 20 onces). We give her solid food once a day, usually before bed. She is over 10 kilos now and getting taller everyday. She also can say, "hi, ok, good dog Gus, all done, thank you, ball, ma ma, da da, Kate, more, yes and no." She usually talks when she wants to and usually resorts to pointing and grunting. No changes with her TPN but she seems to bemuch better managing handling her hydration .

To bathe or not to bathe

This is a question that we used to debate regularly. It is a personal decision that all short gut parents are faced with. The worst part is, there is no right answer.

When we prepared for discharge from Children's we were trained by a nurse we now call Uber nurse. She gave us an excellent training on how to care for Ellie's Central line at home. To refresh your memory a Central Venous Line (CVL) is a very small white catheter that enters Ellie's body via a vein in her chest, it snakes up to her neck and then goes under her sternum and down straight to her heart. This is how the TPN and Omegaven gets into her blood stream every night. The Uber nurse taught us how to care for the line, the entry site, the dressing that keeps this area dry and sterile, the cap that connects her IV line to the catheter and everything and anything else that might have to do with or could happen to the CVL.
The Uber Nurse incredibly knowledgeable, and has an amazing sterile technique. After a few trainings with her we started to notice when other nurses were not being as sterile as they could be, this is when we took over all of Ellie's CVL care. If we have any questions about the line we call the Uber Nurse. If we are at the hospital for clinic and they want to access Ellie's line, the Uber Nurse is the only one that we will allow to touch it.

The reason we are so careful is that if bacteria gets into the line Ellie will get the dreaded LINE INFECTION. Because the line is in her heart, that means her blood gets infected and that is never good. Ellie has had two of these in her life. She (knock on wood now) has not had one for 10 months. So whatever the Uber Nurse taught us, is working.

Now as for our dilemma. During our CVL training the Uber Nurse stressed again and again how important it is to keep the dressing and the whole area dry. When we were inpatients a few mornings a week Ellie would get a sponge bath and we would wash her hair while being very careful to not let the dressing get wet. When we got discharged we continued bathing Ellie this way. This means that Ellie has never had a real bath. She has never been able to play in the water. After we where home for a while I started talking to other short gut parents and discovered that we were in the minority. Most short gut parents bathe their kids just like normal kids. They put a water proof dressing over the CVL dressing and then change the whole dressing after the bath. Some parents let their kids swim, go to the beach all things that we thought we would never be able to do. So when we were in for clinic the last time we went and found the Uber Nurse and picked her brain. Where we being overly protective/hydrophobic?

Her response was, "Before you decide to risk the CVL you have to consider if the child is going to have a CVL for life, how old the child is and why you want to take them to the beach, swimming pool or give them a real bath. Ellie is so young that she doesn't know what the beach, swimming pool or bath tub is, so she will not miss them. Really you would just be letting her swim in the ocean or pool to make you feel better not her. If she was older or was going to be on TPN for life it would be a different story. Right now, don't risk it, continue what you are doing. It's obviously working."
At first I was sad, no Ellie playing in the water. But, I know she will have her time in the water, the girl is going to have gills anyway from all the fish oil. Water is just in her future, not in her present. We don't know how long Ellie will be on TPN, find me in another two years and I may be tossing my CVL child into a swimming pool. But, for now we will continue putting Raffi's "Banana Phone" in the CD player and bathing Ellie on water proof chucks in the middle of her bedroom floor.The best part of giving Ellie a bath is that I get my fix of clean baby smell. I think I could become a very rich woman if I could find a way to bottle that scent. When she sits on my lap to read her bedtime story, I can't stop my self from sniffing her hair the whole time. I have a problem, and I admit it. Oh, well.

Good Mileage

We did it! TEAM ELLIE walked 2 miles to support Children's Hospital Boston this morning and raised grand total of $3,151.72. We made it over half way to our Goal.
The team of all stars were Gib and I , Kate, Beth ,Kelly, Alex, Sophie and the Rock Star herself, Ellie.
Yes, and Sophie did make it off the couch and joined the team for the walk. Love ya Soph!
It was a good time with music, free food, and good festivities. There were many groups there walking for staff and for patients, the last number I heard was that they were expecting around 5,000 people and it looked like they were all there.
As we crossed the finish line they asked Kelly who she was and who she was walking for, TEAM ELLIE was her reply. It was odd to have the announcer call us out as we finished but also great to hear Ellie's name. Here she is with her medal she got for finishing.
Today made us excited for next year. We hope to have a bigger team, with team shirts and to raise money once again for a great cause. Thank you to all that supported the team on the walk. We raised a great amount of money and got donations from all over the country, including Canada! The donations that were really great to see were those from other short gut families around the country. Thank you.
Thank you also to the great group of walkers that showed up to walk with Ellie and who did good work to raise money. We all had a blast and hope to see you all again next year. Thank you, Thank you Thank you!
Ellie had a great time, she loved all the people and all the other kids. She even found a dog to befriend before the walk. But she didn't even make it back to the car before she decided she needed a nap.


Thanks again to everyone for you love and support.

Just in case it rains tomorrow...

Ellie will be ready. And fashionable:Sorry for the focus. She moves too fast for the camera to catch up.

On the mend for walking day

We are all perking up after our individual rounds of colds. Ellie is great other than than runny nose that makes a crust on her top lip after she sleeps. Abby is back to 100 percent. Except for a shooting pain in my ear and a general gross feeling, I am improving as well. The Dr. told me that it isn't an ear infection, but yes I went today to make sure.

We are looking forward to our day in Boston on Sunday and seeing Team Ellie do its thing for Children's. We never thought that we would be this successful or have this many folks come and join us but it is great. Our team is 7 right now and may be eight if Sophie gets off the couch and walks with us (yes you, Sophie!). We are already past the halfway mark towards our very ambitious goal of $5000 for Children's which is great.

Thank you to everyone that supported us and Children's. This is the kind of support that lets the hospital do all of the little things that made our time there much easier. Food vouchers, phone cards, and even help with our mortgage while we were living in two places, if you can believe that. This kind of money let's the hospital do the things that are necessary to let parents focus on their kid and not silly things like meals or parking.

To make you feel even better, we have been in touch with families from Idaho and Arizona this week who are interested in omegaven for their babies and have gotten in touch with Dr. Puder at Children's to get the bottles of fish squeezings for their babies. It is nice to know that the word is getting out one way or the other and hopefully other babies will get it early in their TPN like Ellie did and avoid liver damage before it happens.

I hope that we see some of our friends from Children's while we are there on Sunday. We may have to take Ellie for a visit to 'the floor' to see her great nurses and say thank you to them for all that they did for us.

I am afraid that in the move home in December that we may have forgotten to say thank you to everyone. I think about it all the time and wonder whether they know how much we appreciate what they did for Ellie and for us.

A trifecta of sickies

We came back from our weekend in New York with nasty colds in various stages of development and have been fighting them off a our own paces since Sunday.

Ellie was snotty as we left for NY on Friday and slept the entire way home from NY on Sunday, 6 hours. Then she slept the whole night Sunday night. This concerned us a bit and we had thoughts whether we ignoring something important. Other than being tired with a runny nose she was great so we let her sleep and she was back to 100 percent by Tuesday.

Abby's two days began on Monday when she woke up and went back to bed for the day at 10 AM. Yesterday she was very tired when I went to CT for a meeting. Sick Abby plus healthy Ellie and Gib gone equaled a very long day or Abby.

Fortunately I felt great for the drive home from NY and through Tuesday AM I was great. Then it hit me as I sat in a meeting in CT, feeling really bad. Today was a lost cause and I slept a good portion of the day.

Now I am glad to say that other than some runny noses we are getting back to 100 percent. No harm, no foul and fortunately no GI symptoms.

We have bad dreams about getting stomach bugs.

Have kid will travel

This weekend is Abby's tenth college reunion. Abby considered coming with just her girl friends from college for a field trip but considering the number of people that know about Ellie, we decided that it might be weird for her to come alone. If someone saw Abby without Ellie they might think that ellie was really sick. Instead we are here with a smiling if a bit snotty girl who is charming everyone in the place.

Since we came for two nights we brought the full set-up for TPN and omegaven as well- IV pole, scary pumps, etc, etc etc. All of these things that are very common for us.

I take it by the look on the guy's face in the hall this evening that they are not common for everyone. I think that if I had dropped my pants on the spot he would have been less shocked than he was to see Ellie's pole. Too bad for him. The smooth linoleum floors made for great walking with Ellie and I'll be damned if I will pass that one up to hide her hardware.

This is my kid, these are her pumps. deal with it.

Abby had a funny experience in the NY State Thruway bathroom today that is similar to this: As Abby changed a diaper she heard a woman saying to her friend that Ellie was way to young to be wearing a backpack. I am really glad that I wasn't in there because I would have let the silly hen know that 1) it is not just a backpack but a medical device, 2) her physical therapist and developmental special have approved of it.

Abby chose to avoid the drama.

The scariest part of this trip is that we are out of the Children's safety radius for the first time. If something happens (knock on wood) we would have to go to another hospital instead of making a beeline for Boston like we would do in Maine or CT.

Abby told a college friend tonight about Ellie and her condition. The woman told us how impressed she was that we made it. We told her that we had lost a whole lost summer in the hospital and had a lot of field trips to make up for.

This adventure will expand our comfort zone and open up more possibilities for places and people to visit. We have friends outside of Baltimore that have two young kids.

Having our babies play together would be a personal victory for Abby and I and something that we have thought about for a long time.

One of these days...