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...

More calories than Coke?

In the past month or so Ellie has not gained weight as fast as we would like her to, so about two weeks ago we contacted the team and asked for one night of TPN back. That takes us back to 2 nights of D10 and 5 nights of TPN. We are very excited about reducing the number of nights of TPN but only if she continues to grow. Yes, we still weigh her everyday and so we knew that she was not gaining much. This wouldn't have been much of a problem if she had continued to grow lengthwise. But, we also measure her every week or so and so we knew that she had stopped growing.

Ellie at her first pumpkin patch

So, last week we had our normal Short Bowel Clinic day at Children's. They were impressed with her growth, saying most normal 17 month olds gain around 9 grams a day. With the bump in weight after adding the night of TPN back on her average is around 10 grams a day. They were very excited and wanted to take the night of TPN back off.

We had a long talk about what Ellie actually needs from her TPN. She isn't having an issue with hydration so she isn't completely dependent on it for fluid. But, she does stop growing when we reduce nights. This means that she is dependent on it for the calories. So, we had to look at a way to increase her calorie intake so that she doesn't depend on the TPN. So we asked to meet with the nutritionist.

Ellie driving her first tractor(she is blowing me a kiss)

First we increased the calories in her Elecare formula. Now that Ellie is a big girl, she has been bumped up to toddler Elecare, 30 calories per ounce. Still unflovered and foul smelling but a whole lot of calories for our girl to absorb as it passes through.

To give that some perspective, full strength Coca Cola has just shy of 13 calories per ounce. so Ellie is on formula that has just a bit more than twice the calories of a can of Coke. The reason is there will be a fair amount to formula that she eats that she doesn't absorb due to the missing intestine. So no worries we don't have a sugar high spaz for a baby, she seems to be handling the increase just fine.

Ellie and with what she kept calling a fish

We also looked at her solid foods. When we told the nutritionist what we fed Ellie, she said it was way too healthy. She said that we need to increase her calories that come from fat. So instead of Cheerios and pretzels we should be feeding her snack foods like veggie sticks and Ritz crackers. Basically try to keep it healthy but increase the fat. Every short gut kid reacts differently to sugar and to fat, so we just have to try new things and see what happens.

We also looked at her meds. She was on Reglan to help her stomach empty faster, Iron to help with the size of her red blood cells, and Zantac in her TPN to reduce the acid level in her gastric juices. She has had great motility for the past few months so we discontinued the Reglan. This is great because we have heard there are some nasty side effects from Reglan, we haven't seen them yet and we would like to keep it that way.

Ellie with new clothes from Gramma

In the end we decided not to reduce the number of nights of TPN just yet. We wanted to change the calories that she eats and see what happened and if all went well we would take the night of TPN back off. We didn't want to try to change too many things all at once.

It has been five days since we changed everything and she has already gained about a pound. This may be to a bit too much of a jump. We will just have to watch and see if it was a fluke or a trend. It also been five days since we fully discontinued the Reglan and increased her calories and she is doing great. Her output from her ostomy has decreased meaning that we can increase her feeds, either on her milk pump or solids.

She seems to kinda like the Veggie sticks. She hasn't really given the Ritz a chance. We also started adding a bit of olive oil to her baby food and she doesn't mind that and her poops look great! We just have to keep trying new stuff and watch her output to see if she tolerates it. She still isn't allowed to have real milk or any kind of nut, because short gut kids can develop allergies very easily.

Corals at Mystic

The last thing we had done at clinic was a TPA treatment for Ellie's central line. We have had problem drawing blood from it for a while now and just recently it was flushing more slowly. So we did a TPA treatment and it worked like a charm. We have decided that even though the line draws nicely now we will continue to go to the blood lab to do peripheral draws for blood work. The nurse brought up the idea that because only Gib and I are the only ones to ever touch her line, could be one of the big reasons that she not had a line infection in over a year. (please knock on wood now)

So, that is the update. She is doing great and charming us more and more everyday. Oh yeah and we went to Bel Air, MD to visit the Bretkos, Harpers, and the Craigs. It was a blast, and it just left us very excited about the next time. We also went back down to Mystic to visit the aquarium and Ellie had her first play group with the new early intervention. Wow, what a week. Have fun in Detroit Kelly!

Ellie and Kelly

A long overdue update

Ellie is doing amazingly well. Everyone that she meets, both professional and otherwise just can't believe that she has all of the medical issues that she has. She is doing so well, in fact that we often neglect this blog in favor of playing with her or doing other 'normal baby' stuff with her. To us, her daily exploits are quite boring but then a bit of perspective reminds us of how remarkable she really is.

She eats, she sleeps, she grows, she poops, she runs, she talks. All of that normal baby stuff that shouldn't be so remarkable is remarkable since we were told that day that she was born to expect 'significant delays' in her growth and development and reaching developmental milestones. Yeah yeah, delayed.........

A nice update to this stern warning came last week when we enrolled her with a different agency to provide Early intervention services for Ellie in the new town. The new agency folks are just as amazed as the old agency was. At 16 months Ellie is consistently ahead of all of her milestones and tested out at an amazing 26 months for social expression! I guess the Irish bullshit appeared early for her and she was on her game for her evaluation

Her doctors are very pleased with her growth and development and last week gave us the unanimous thumbs up about her progress toward the first goal of losing her TPN and then losing her other hardware. we are a bit shy about peeling away nights of TPN too soon (which will slow her growth if we go too fast) but we are moving in the right direction.

She still has a giant melon which remains a bit of a concern for the lab folks but otherwise she is great and her liver continues to do very well even after a very long time on infant TPN.

And her friends and family are pleased with her as well. This past weekend we finally made the trip to Maryland to visit a bunch of good friends of ours and introduce our kids (all 6 of them) to each other. Even though we had to leave a day early when one kid's bowels decided to erupt, we had a nice short visit and we think that we have dodged the gut bug. We opted for safe rather than sorry, which is our general approach these days since 6 hours in the car with a case of diarrhea is no fun at all.It was nice for us to be able to visit and I think that it was good for all of them to see Ellie in the flesh and see that she really is the super happy giggling little girl that we show on the internet. I'm sure it would be easy to edit out the bad days but (knock on wood) we really haven't had many of those in a long while.

The lack of updates is simply the result of very full schedule and a very happy girl.

When note worthy news happens, hopefully for the better, we will be sure to get it up here, but bear with us while the weather is good and the girl is happy. Denying the girl a tricycle ride in favor of a blog post just doesn't make sense.

Overcoming Short Bowel

In my mind there are many ways to overcome all that comes with being short gut and being the parent of a short gut child. Here are some examples.

1. The intestines can adapt and your child can gradually start tolerating food just like a normal kid. They can eat as much of whatever they want whenever they want.
   
2. Your child can get an intestine or multi organ transplant. There are many issues that come with transplants but in the end your child is no longer "short gut."
3. You can continue to live your life the way you want and not let a little thing like missing organs get in your way and teach your child to do the same. Still try and work everyday at making the intestines that are there do their job better, but do it while living as normally as you can. Hopefully this will lead to the same result as #1.
   

Max Munakata in PARIS!!!!!!

This is Max, he was on our blog last February looking very yellow and not to healthy. Thanks to some amazing parents and Omegaven he is now on VACATION in Paris. Yes, I said vacation. Okay, so his parents are there for work, but how normal to be able to bring their child with them.

Max has extreme long-segment Hirschsprung's which has left him with only 25cm of small bowel. Unless he gets a bowel transplant TPN or some version of fluids will always be a part of his life.

Now some of you out there may think that taking a child with a central line, G-tube, ostomy, and all the medical equipment all the way to Paris is insane and would be hard enough to do with normal a kid. But TPN and all that comes with it is "normal" for short gut parents and kids. So they should be able to live their lives just like all other "normal" people. It is just a different version of "normal". So bring on Paris!

I am so proud of Max's parents and so excited for them. I hope all goes well on their trip and that they come back ready to travel more. With a nice break and much sleep of course.

On the Omegaven news front, there are now 24 Hospitals in the US that are administering Omegaven. There are now 60 patients that are on Omegaven, Ellie was number 23. We also just added a link to the side bar of this blog for the "FDA IND form" that is needed to get your child or yourself approved to use Omegaven.

Gus is doing well. He is came home today with a shaved head and a draining incision on his head. He is doing well, loving the strong antibiotics and riding the pain killer wave. It is nice to have our dog back.

Lumphead

Gus is back in the (semi) capable hands of the vets at Tufts animal hospital today. As he left earlier this week they told us to watch him and watch his lopsided head to make sure that the round side didn't get any bigger or the hollow side any thinner.

By last night our beautiful dog looked like a lab from the right and a mastiff from the left and off he went this morning to be seen by the same doctors who were sure that they had caught his problem earlier this week.

It turns out that while focusing on the positive test for myositis and ignoring the information that Abby gave them about antibiotics helping in the past, the vets had missed the infection that we were concerned about on Monday.

To add insult to injury, the heavy doses of meds that we put him on (prednisone and an immuno-suppression drug) may have opened the door to help the infection along.

So he in back in Grafton today with a swollen head and we are not very happy with his vets.

He will have some tests and probably have surgery to get at the source of the problem. We hope that they will treat the source of the problem and not the symptoms.

I think that having such great rational and logical doctors at Children's for all these months has spoiled us but we have really been baffled by some of the treatment that he has gotten this week. Abby is very good on this stuff but the number of times that she has told the vets how to treat Gus really amazes me.

All I want is my dog back, fetching a ball and letting Ellie climb all over him.

Gus

Well the saga continues. To give you an idea of what we have been dealing with, I need to give you the history of the past month. About a month ago we noticed Gus was acting funny. He was sleeping all the time and didn't want to play fetch. Now he is a lab, so he should want to play fetch even when he is dead. So, off the vet we went. The vet decided that he had an infection in his jaw caused by something that he was chewing on (grass or a stick). The infection probably moved under the muscle up to around his eye and to the hinge of his jaw (that is where it is in a dog). So he was put on antibiotics to treat the abscess.After 10 days of antibiotics he was great, playing fetch with Ellie and playing with his soccer ball just like he used to. Then we get a call from the vet. It ends up that Gus has tested positive for an autoimmune disorder called masticatory myositis. Basically his body is attacking the muscles of his face and jaw because they have the same protein signature as a bacteria. The treatment is a long term, decreasing dose of steriods. So we started him on steroids. And the side effects of steroids, among other things, is increased hunger. Bring on the corn cobs!

Gus post surgery with his C collar

So, then we have the exploratory abdominal surgery to try to remove the corn cobs. Gus spent three days and nights at the hospital and got a big shaved belly with 12 stitches. We had to stop the steriods because they are known to inhibit healing. Then last Wednesday we noticed that he was sleeping all the time again and couldn't even eat Ellie's carrots that she was feeds him on the sly. We called the vet clinic and got the ok to start the steroids again.

Gus's first day with us.

Ok, so this brings us to Monday. He was in bad shape, would not leave my side and could barely eat his food. A lab that can't eat is a sad dog. Back to the vet. They start thinking that it is the abscess again and want to do another exploratory surgery of his face that afternoon to find the abscess. I decided that Gus has been explored enough, so we packed up and headed to TUFTS veterinary hosptial.He was admitted as an emergency case and is kept over night. He was seen by two regular vets, three students, and two neurologists. I was able to pick him up last night. They think that it is still just the autoimmune disorder. They have him on a much larger dose of steroids, (hide under lock and key all food for the next month or so) and an immune suppressant. (nice word for chemo)The problem is that they just think it might be the immune disorder. We are now playing my least favorite game called, wait and see. If it is the autoimmune disorder then he will slowly get better. If it is the abscess then it will get really bad very quickly because his immune system will not be able to fight it.So for now, we wait and watch Ellie play with her best friend. When we got home last night Ellie spent the rest of the evening chasing Gus around yelling, "Ga, Ga, Ga!" and then tackling/hugging him every time he stopped moving. We miss him when he isn't here and get nervous as to what he has in store in the future. We are actually hoping for the autoimmune disorder, which would mean no more surgery. Luckily Ellie has been doing great through all of this.

Via the Sea

We finally got Ellie on the ocean this weekend. We took a break from our work in progress of a house and went to to Maine to see my family for a few days. Traveling is very easy for us now and we have worked out most of the kinks in the logistics which makes it a lot more fun for all of us.

We have been trying to get Ellie out for a boat ride since this spring but with naps and ostomy changes we never had things line up to get her on the water.

This weekend's major goal was to get floating and Saturday morning we cut ourselves loose for a short ride around the harbor where I spent my summers a kid. Fortunately my brother has lots of life jackets for his kids and had one that was small enough for Ellie.

Mom, what is this thing and why can't I clap my hands?

She took a little while to get used to the new surroundings:

You want me to get on that?

But after a few minutes and with the company of her best friend Gus she was ready to float:

Oh, this isn't so bad.

Our whole tour lasted 20 minutes but by the end she had been all over the boat and even stood with me to drive a bit:

A successful mission to circumnavigate Pound of Tea Island (over my left shoulder in the picture above) and we were back on the dock.

She insisted on walking us up the runway. She already walks up and down the docks better than her grandfather.

Day at the farm

We had a good weekend last week, we worked on the house, planted our gardens and went back to the farm with the petting zoo.
Ellie had a great time. She seemed to really understand that those things in the pens were actually animals. She really like the chickens and had a good time petting the donkey. But, try as we might we couldn't get her to stop calling the pigs "Gus." They were some pretty big pink and black pigs, I don't know how they reminded her of Gus, other than that they too might eat anything and everything.I like this picture, because I think it is actually talking about her hair and not the goats that live in the pen.Gus is healing well from his surgery, and can't wait till next Monday when he gets his stitches out so he can swim again. All in all the house is starting to look like a home, especially now that we have a kitchen sink and counter tops. Ellie is doing very well. She is handling the three nights off of TPN well. She seems to have stalled again with weight gain, but she is still growing. We had to go buy new shoes, real shoes not crocs, yesterday. We are trying new foods, adding a fourth meal in and trying to keep her eating as much a possible. Mainly she eats baby food mixed with rice cereal but we are trying some bits of our food when ever we can.
Her favorites are avocado, banana, pickles, pretzels, and carrots. She likes almost any baby food we give her, we just have to be careful and make sure it is something that a short gut kid can tolerate. We mix almost everything with rice cereal so that it will stay in her colon for a longer period of time, so she can get more liquid from the food. We try to have bananas or apples in her diet at least once a day also. Peaches and peas are the only thing that we have seen a negative reaction too. Negative as in too much ostomy output. So we just keep offering her foods and hope for the best.
Ellie has also started to really pick up on the sign language. Not as much as other kids that we know that are signing super stars, but Ellie can get her point across. Last week we were reading a book Christian gave her and she surprised me by giving the sign for fish. Growing up in this house we knew that we were going to see the word Fish sooner or later from her.