2015 Raffle - March 21, 2015

Check out the March 2015 Raffle page - click here for a list of prizes so far!

To purchase raffle tickets for the grand prize Click Here. Grand prizes include the following:
- 4 One-Day Park Hopper Passes to Disney World (expires 2/5/17) and
- 4 tickets to a NASCAR Sprint Cup Race at NH Motor Speedway on 07/19/15.
Separate drawings for each. Do not need to be present to win these.

2013 Raffle Reflections

On March 16, 2013 a Basket Raffle Fundraiser was held in my hometown to benefit the Children's Interstitial Lung Disease (chILD) Foundation. The chILD Foundation is a non-profit organization founded in 2004 to accelerate research for pediatric interstitial and diffuse lung diseases to improve the quality of life for children suffering from a group of around 30 chILD diseases that affect a child’s ability to breathe and supply oxygen to the body. Due to the rarity of these diseases, lack of research, and lack of knowledge about these diseases, there are no cures for many of these and the causes and prognoses are unknown.

If you are reading this, you probably know that my daughter has a rare lung disease. However, you may not know that the name of this disease is neuroendocrine cell hyperplasia of infancy (NEHI). You probably also didn't know that NEHI is a chILD disease which was only recently classified, 2005 to be exact. Emma, like a majority of children with this disease, is required to be on oxygen 24 hours a day. This disease is so rare that there are only an estimated 500 kids that have NEHI. 500 kids (similar to the number of kids in a large high school) spread out throughout the country and world that share this common bond. When you connect with these people, even if not in person, even if only through the internet, it's almost like finding a long lost cousin that you didn't know you had.

Last fall I decided to organize a basket raffle to benefit the chILD Foundation. The decision was inspired by my desire to contribute to an organization whose mission is to help find answers to diseases like the one Emma has. Emma does not mind being on oxygen. She has had her cannula since she was 10 months old, therefore to her it is just a part of her life. In fact, if you ask her where her oxygen is, she will point to the cannula on her cheeks. To me, it is sometimes difficult to face the fact that this is not like a common cold that momma can fix with some medicine or rest. This isn't an ear infection that will go away in a couple of days. This is one condition that momma can't fix. While I realize the amount raised in this event won't make a big impact on it's own, it is something, and something is more than nothing. I got connected with a contact from the organization who has been very supportive and helpful throughout and I was off and running.

I began my search for prizes by filling out online forms and emailing companies requesting donations. The first "corporate" prize received in the mail was from the Montshire Museum. The first "personal" prize was received by my ex-sister-in-law. I was surprised early on by the great prizes that were coming in. As I look back, I think my first "awe" moment was when my daughters' daycare provider said that she was going to make an afghan as a prize. I don't knit or crochet but my mother was an avid quilter so I do appreciate the intricacies of this type of skill. This was the first of many "wow, that is really nice" moments I've experienced through this planning. Another of these was when I received a facebook message from someone that lives in my Town, someone that I didn't even know, with the following message:

"Hi Jenny, I would like to donate a basket for your raffle.

I want to make a family pack of hats.

2 adult hats and 2-3 kids hats, all hand-crocheted.

Where should I drop them off when they are finished?"

15 days later I picked up 5 hand-crocheted hats, neatly packed in a cute little basket, at the local store/gas station/post office. "Wow" I thought again. In the meantime I obviously appreciated all the prizes coming in from family and friends and people that I had asked if they could make a donation. But imagine, someone that doesn't even know me or my family going out of their way to do this. Again, "wow, that is really nice" I thought. 

Meanwhile my best friend is selling a large number of raffle tickets for me. My mother-in-law is making numerous baskets for the raffle. A local business gives three prizes after hearing about the raffle. We receive a gift certificate to a local kids nature camp without any solicitation. The list goes on.

The response for prizes got to a point where we didn't need to worry any more about having enough prizes. We even got an amazing grand prize which was 4 one-day park hopper passes to Disney World which ended up being a prize all on its' own. That was pretty exciting when I got news of that. Another exciting moment was when we got two airline tickets. I give credit to my sister-in-law for leaving me a voice mail one day about a contact about the potential for that prize. Another great prize was from a fishing club that my husband is a member of. We received so much fishing tackle from them that we broke it up into 3 prizes. Another couple in town donated a gallon of maple syrup, which they delivered to my daycare because they were headed out to Florida the following day. My goal was 50 prizes and the final total ended up being 80.

I am paranoid by nature so once the prize situation was under control, my next worry was whether people were actually going to attend. Another worry was what to do for food. One week before the raffle I'm still nervous about what to do for food at the event. Our daycare provider comes to the rescue and talks to the local church group that she is a part of and they hook us up with sandwiches, chips, and cookies. My mother in law also assists in this by making 140 cookies.

Fast forward to the morning of the event when we were getting ready at the school and the mailman stops by. He comes in and tells my husband that he has a package for me. He said that he noticed our cars were not at home during his route and saw our vehicles at the school. He went on to say that he thought the package might be something we needed for the party. Keeping in mind that I know our mailman by name only, this was pretty awesome of him to think about going out of his way to do this, let alone actually going out of his way to do this. Another "wow" moment.

As mentioned, I was worried about what kind of turnout there would be. As it turned out, that turned out to be great too. Our friend that lives 2 hours away came up, another family member 2 hours away attended, my husband's coworker that lives 1 hour away shows up, several school staff members, friends and family, my aunt that I haven't seen in years, and a great turnout from the community. I love my small rural town with a population of approximately 740. It was great to put a name to faces of people that I see around Town.  

 One day, less than a week away from the event, I decided to put together a poster to post at the event to include information about chILD diseases. As part of this I wanted to include a section titled "faces of chILD" and have photos of kids with chILD diseases. In a matter of about 3 hours online I was able to find enough photos for my collage. Not all of them had NEHI, but they all had a chILD disease. When you think about it, it is really quite amazing that I was able to get permission from enough parents of children with these rare diseases to use their childs photo for my collage. All of these found in a small community on a facebook page for parents of children with chILD diseases created by a mother on a mission to connectto other chILD families. For these few hours searching for photos for my collage, it felt like this disease was not rare at all. I cannot put into words how therapeutic it feels to be able to connect with these facebook "friends" that I don't even know that share our journey.       

Mission complete. Everything turned out great and the total contribution for the chILD Foundation will be $3,305. It was fun to hear people talking about the prizes they wanted to win. Whether it was the 3 cubic yards of crushed gravel, the Craftsmen tools bag, or the coveted Kindle Fire prize, it seemed many had a "favorite". When the winning ticket number for the autographed photo of Dustin Pedroia from the Boston Red Sox was called out, the winner raised his hand and said, "Yes! This is why I came hear today!" I thought that was great. I think everyone had a great time, also important for a successful event.

When I started organizing this raffle it was all about helping the chILD Foundation (obvioulsy) and self-gratification to feel like I am contributing. It turned out to be something so much more. I did not anticipate the level of support that I received from people that I do not have any personal connections with. Those family and friends that supported and assisted and offered to help however needed is noticed and appreciated as well. But when people go out of their way to do something nice for you and you don't even know them, it is heartwarming to know that these people are around and even more great to have these new connections. The local support really reinforced what I already knew, that I live in a great community surrounded by kind and generous people.   

Thank you to everyone who made this event a success. Even if you are not mentioned above, it does not mean your efforts have gone unnoticed. It just means I ran out of time to mention your story.

chILD Foundation Bracelet Fundraiser

The chILD Foundation is organizing a fundraiser to sell silicone wristbands that look like the following:

Each bracelet costs $5 each and they come in two sizes: adult and youth.

If you would like to buy one (or more!) please either:
(1) send an email to me at jenny.austin@myfairpoint.net,
(2) send me a message on Facebook, or
(3) make a $5 donation (or multiple of $5 if you want more than 1) to Emma's FirstGiving webpage (CLICK HERE) and in the comment write "bracelet donation".

I will need to know the following:
(1) how many you want,
(2) how many of each size,
(3) how payment will be made, and
(4) address for shipping.

 

I will let you know when they are in and ready for shipping. I believe it will probably be August 2013 when they are ready. Kudos to Amber Gugolj and Aaron Steinmetz for their hard work coming up with the idea and organizing.

Basket Raffle Fundraiser to benefit chILD Fundraiser

GO TO THE LINK ABOVE (TO THE RIGHT OF "HOME") FOR MORE DETAILS.
Also follow on Facebook at https://www.facebook.com/#!/events/170871826390994/?fref=ts

Hello Mini Gait Trainer... or "Go Go Gadget"

It all started with a random email to Emma's physical therapist:

04/06/2012 08:20:40 PM
I found a new Facebook page that has a couple references to medical supplies for kids and saw the following:
http://www.rifton.com/products/mobility/pacergaittrainers/
Do you think Emma will need something like the above (gait trainer) as she gets closer to walking?

Only a month later and Emma has a two week trial to try out the mini pacer gait trainer. Last week Emma's physical therapist brought one to her session, but it didn't have all the needed bells and whistles that Emma needs for trunk support. This week, she brought it back with the added attachments. She stands in the stander (which is a bright pink Leckey Squiggles), the jumper (Johnny Jumper because it has the highest maximum weight capacity of 28 and all the others have 24-25 pounds), saucer, and you can she can stand if you hold on to her sides. You can make her move her legs but you have to hold her sides and use your feet to literally move her feet.

This morning Emma was in the gait trainer and we were all so happy with her willingness to use it, and she even picked up her feet a few times. Last week when we first tried it Emma was actually getting upset because (we think) she wanted to try it out. She was getting fussy as PT was making the adjustments to get it to fit her size. In general, PT did have to literally move her feet to imitate steps. But we were all so excited that for even those few times she picked up those feet like she knew what she was doing. She was pointing at things so PT brought her over to objects to check out things. I think PT was surprised at how well she did in it. To be honest, so was I. She is usually apprehensive about new equipment, especially for the first few trials, so this was just great. I could tell PT was pleased with how well it was working for Emma, and that made me even more excited. The stander has really helped get her to this point and so I can't wait to have her use it.

Tonight Catie and I took a video of Emma in the "go go gadget". That is what we call it. PT was saying that it was to "go go" and daycare was calling it a "gadget" so it is unofficially called the "go go gadget". Catie was so cute the way she was trying to help Emma. She was taking the video while I stood behind Emma and helped her move. "You have to stand up straight, Emma" and "Pick your foot up, Emma. You have to pick your feet up to walk." she would say. It was so cute. She would even talk to her in the tone that an adult talks to a young child. She is most certainly my big helper!

Now, we must figure out where to put it amongst all her other stuff!

Inchstones

I recently stumbled across a website where a mom spoke of inchstones, instead of milestones, and I have incorporated this into my way of thinking. A baby sits up, rolls over, crawls, and walks. These are the milestones they teach you about in the "what to expect with your baby" books. If your baby meets these milestones it's like putting a check mark next to the box and continuing to the next chapter. When your baby doesn't meet these milestones, it can be frustrating. You want your child to have the ability to do what all the others their age are doing. When you are chasing after your one year old in a store you wish they would just stay still. When your child is 22 months old and not mobile, you wish it were the other way around. You wish you could be that mother chasing down their child hiding in the clothes racks at the store, jumping up and down throwing a tantrum. Not because you want your child to be that out of control child, but simply because they can do it. They can, and yours can't. When progress is slow you have to think about milestones in a new way.

One recent inchstone we experienced with Emma is sitting in the front of a shopping cart. I know, this sounds so simple and so uneventful. Why would any mother be excited that their child can sit in a shopping cart. Emma could not sit in the front of a shopping cart until about a month ago (~21 months old). Prior to this, we had to use an infant car seat. She was too big for an infant car seat for travel, but we had to carry around an extra car seat (infant size so that it could fit in the front of the cart), transfer Emma from her car seat into the infant seat in the front of the shopping cart. If you set her in the shopping cart without this she wasn't strong enough to sit up with just the shopping cart buckle. One day I decided it was the day to try her without the infant car seat. That's right, try to sit her in a shopping cart solo. It really wasn't a matter of deliberation over whether she was ready or not. It was more simple, I didn't have the extra seat with me! So, I tried it. I buckled her in and wrapped my jacket around her to prop her up so she wouldn't slump down. It worked! By the time we got to the cashier I found myself needing to reprop the jacket around her for support. We still have to put a jacket around her or else she will slump to the side, but I'm confident some day we will be able to remove the extra cushion. I don't know when that day will be. I can't look that up in a book of milestones because it's not there. It will be another inchstone that she'll surprise me with someday.

Thinking about milestones is hard, but thinking about inchstones gives shorter interval goals that gives you a sense of growth and development too. With Catie I would have never even given second thought about putting a 22 month old in a shopping cart. I was that mother that was chasing their child out of the clothing racks. She wasn't the out of control child, but she did meet all her milestones and I checked off the boxes without even thinking about them. Now, I don't know when I will check off the boxes and move to the next chapter. But that's okay. Sometimes it doesn't feel okay, but most of the time it is okay. When she surprises me by meeting an inchstone that you don't even anticipate, that makes it okay.

In My World

In My World

In my world when I hear the word flush I think of a syringe, not a toilet.

When I hear the word tank I think of oxygen, not gas.

When I hear a cough it’s time to get out a burp cloth, sometimes two, maybe even three. The tongue curls and watch out, I hope it doesn’t get on me!

When I say I need an extension I know what you think, I’m trying to make my hair long again and be 23. No, that’s not what I’m saying. I’m saying Emma needs to eat.

Other moms want their babies to keep stuff out of their mouths. I am constantly hoping that mine will put something in.

If the electricity goes out you might think, “oh, this will be fun.” I think “crap, I hope Emma’s pump is charged” and “it’s a good thing we’ve got extra tanks”.

A trip to the store requires lots of things: a tank, a button, sometimes a pump, a handful of burp cloths, and oh yah, don’t forget the toys (remember, the ones we want her to put in her mouth).

The one you might think is oddest of all is when I say I have to “plug her in”. I’m not sure what you think that means, but that means Emma has to eat.

If you come to my house and you hear a beeping noise, please don’t be alarmed.

It’s not the smoke detector, it’s Emma’s pump. One beep means she’s done eating. If it’s two, it means she’s out of food. What if it’s three? I don’t know, don’t ask me. If it’s three let’s go get out her owners manual and we’ll see.

In my world when I hear the word button I’m thinking about Emma’s feeding tube, not your jeans.

When you see a onesy you think “oh, isn’t that cute”. I think, “yah those don’t normally work out”.

When I hear a baby crying I know Emma is tired, because she is normally very happy, the happiest baby you’ll see.

When I see a baby crawling or walking I think “When?”

When I see a baby eating I think “When?”

When I see a baby being carried with no tubes attached I think “When?”

But more importantly,

When I see another baby I think “She’s not as cute as mine”

When I see another baby I think “She’s not as strong as mine”, and

When I see another baby I think “She’s not as happy as mine”.

NEHI Diagnosis

On April 28, 2011 I brought Emma to the emergency room because she wasn't feeling well and was getting pale. Within the hour Emma was put on oxygen and airlifted to DHMC. Even after 13 days of tests there, the doctors still didn't know what caused her respiratory distress. The picture to the left was taken during this hospitalization.

A lung biopsy was conducted in June 2011. The biopsy has been sent to at least two hospitals across the country for analysis. The initial results from Emma’s doctor indicated that Emma has “NEHI pathology”. When asked whether she has NEHI the answer is “she has NEHI pathology”. I think a simple yes/no answer is not given in the event that there are other yet to be known condition(s) unrelated to the NEHI that would complicate a prognosis for her.

NEHI is short for Neuroendocrine Hyperplasia of Infancy. I have no medical background and the following may not be 100% accurate, but the following is a brief explanation of NEHI as I understand it. Everyone is born with neuroendocrine cells. It is my understanding that kids with NEHI either have too many neuroendocrine cells in the lungs airway, the cells reproduce producing too many of these cells, or they were born with the appropriate number of cells and the cells never decrease.  Generally, the number of these cells decrease naturally. The cause of NEHI is unknown. In general, most kids with NEHI outgrow their need for oxygen at some point.  

There is little research about NEHI, its’ cause(s), prognosis, etc. The chILD Foundation was established to "to provide support, education and hope to families affected with a pediatric interstitial lung disease and to advocate and raise funds for scientific research." Click Here for a brochure they have prepared on NEHI.

There is not a lot of research on NEHI, prognoses, causes, etc. More important than knowing the cause of NEHI is the hope that one day Emma will be off oxygen. The hope that one day I can carry Emma upstairs to bed without holding Emma in one arm and the oxygen regulator in another, one day not having to hook up her pulse oximeter while she's sleeping, one day being able to take her for a trip without her oxygen tank, and one day being able to go for an outing without being asked "what's wrong with your baby". 

The photo to the right is the Emma we all know and love. She adores her big sister. She is sweet. Everyone always comments on her hair, which we all think is going to be red. She is weary of strangers. And,she is a happy baby who rarely fusses (except when she's tired, someone she doesn't know well tries to get too close to her, and at doctors visits).

Hidden Blessings, Evacuating our Home from Hurricane Irene

written September 16, 2011



On August 27, 2011 my family packed up a couple suitcases, some of Emma's medical supplies, and a tote of "emergency supplies" and headed over to my husband's parents house. There was a hurricane going up the east coast that was supposed to make its way through New England. They were predicting heavy winds and rain in our area. We live in a very rural area, and we thought it was likely that we would lose power for a while. We put away stuff that was outside, anticipating, at most, garbage cans and loose toys getting blown around. If it weren't for Emma's need for electricity because of her being on oxygen and her feeding pump, we probably would have stuck it out at home.

VT107 between Stockbridge and Bethel.

On the afternoon of Sunday, August 28, the rain was pretty steady at my in-laws, but nothing out of the ordinary. "Maybe we'll just go home this afternoon", Brian said at one point. It wasn't until late afternoon that we started hearing about the flooding going on in our area on the other side of the mountain.







Over the next couple days we started hearing more and more devestating stories of flooding in our area. Worst of all, we had no idea how our house was doing. We heard that in our little village it was "awful down there", "just terrible", "houses were knocked off their pillars", and "water up to the counters". We were hoping for the best, but bracing ourselves for the worst. At this point, the news channels were not even covering a fraction of the damage across the state. Later we would realize that this was simply because people couldn't get to these places. There were thirteen Towns literally cut off from any access outside of their "island". One of these towns was my town, Stockbridge.

One of the houses in our Village that got lifted, moved,

      and set back down.

Wednesday, August 31, there was finally a route to access our house. What would normally be a 45 minute trip home took 2 hours. I cannot even put in words what it felt like waiting for Brian to call to tell me what the house looked like. The girls and I were out for a walk when we got a voice message from him saying, "You won't believe it, but the house is dry!" He was right about one thing, I didn't believe it. I wasn't going to believe it until he came back and told me in person. I was just dreading the phrase after this sentence... "The house is dry, but..." When he got back he reiterated that the house is dry, but the shed and camper have mud inside. The boat also floated from the back yard to the front yard and into the neighbor's truck. It really is amazing. The houses next to and behind ours had water inside and their carpets were wet, but ours did not. A hot tub at the end of the road was blown off the porch and carried by floodwaters at least 150 yards, but Catie's little red wagon was still on our porch. There were houses on the river side of the road that were lifted off their sonotubes, moved, and set back down 20-30 feet away, but ours was dry. Our garden was matted down, the fence was offset at the corner post, there was debris around all sides of our white picket fence in the back yard, but the house was fine. As I write this three weeks later I am still truly shocked that our house is dry.

Initially, there were three factors we needed to wait on in order to go back home: (1) electricity, (2) water, and (3) access to/from the house. Electricity was the first to get restored. Many in our village did not get electricity back as soon as we did. For any house that sustained water damage, the electricity was turned off until an electrician inspected the house to ensure it was safe to turn it back on. Our water comes from a spring down the road where it is pumped to our Village. The pump house was destroyed, as well as some pipes of this system. Water was restored a couple weeks after the storm. Three weeks later, there is now access to/from the house.

The main road in our Village.

I have been back to the house once in the last three weeks. We only went straight to our house and back to my in-laws. I say "straight to our house" but, really, it wasn't really a "straight" route. The trip still took two hours. We didn't go outside of our little village to look at the other damage as there were lots of people out working on the roads and it didn't feel right to be "site seeing" the destruction.

It is now almost three weeks after the storm and there has been a lot of progress made to the roads in the area. The major east-west route across Vermont, Route 4, was initially closed to through traffic from Woodstock to Rutland. This is a distance of 30 miles. This may not sound like a long distance, but this is approximately 1/2 of the east-west dimension across the middle of the state. The major route in/our of my town of Stockbridge is VT100. This road was closed. To the north of VT100 is VT107. This road was closed. About a week and a half after the storm they were allowing 1 hour of traffic in the morning and evening through sections of Route 4. As an engineer I do understand that it takes a while to build a road, but, as a homeowner, I am still anxiously awaiting being able to get home in 45 minute.

In addition to the State roads, many Town roads are in a state of despair as well. The road to my girls daycare was demolished. I know this sounds like a strong word and exaggeration but I assure you, there are sections that have literally been demolished.

Prior to August 28, if I saw the pictures that I've seen in the last three weeks but under the picture said North Carolina or Louisiana, I would have thought, "oh, that's too bad". Now, seeing those pictures with the caption of Stockbridge, Vermont or other towns that are close to my heart gives me such a stronger compassion for what this means to a person that lives in a community where their town was broken. I cannot pretend that I know what it would feel like to have been one of those not as fortunate as we were. I cannot even phathom what is going through their heads.

I see the pictures over and over in my head. Pictures from local news, national news, Facebook, and images of my road and neighbors houses. I don't enjoy seeing these images, but I cannot stop thinking about it. I always thought Vermont was located such that we miss all the major natural disasters. Usually the worst weather we have are massive snow storms. Once in a while there will be a tornado warning somewhere in the state, but I have never encountered anything like this.

They are comparing this event to the 1927 flooding. I have not seen any official comparisons between the two. It really doesn't matter which one is officially "worse". This is still the storm we will never forget. Although the house remained dry, we are lucky we got out when we did. We heard from our neighbor that they were evacuating people in our village in the middle of the storm.

I would obviously prefer that Emma did not need to be on oxygen and a feeding tube. But, if she didn't have these needs we would have stuck out the storm at home.  It is a hidden blessing that we left because of Emma's medical condition. If we hadn't left we would have ended up leaving during the midst of the storm. Where would we have gone then? Would we have made it to Fair Haven? Where would we have been stuck for days with a five year old and thirteen month old? How would this story be rewritten if we hadn't left?

Tomorrow we will be going home again, three weeks after Hurricane Irene. Our lives will not be back to normal, but it will be one step closer. My route to work will be much longer for a while. The route I usually take is one of the hardest hit roads. Other roads will not be the same for a while either. Eventually, our lives will get back to what I consider to be "normal".

Emma's First Time Camping: Could the "To Bring" List Possibly Be Any Longer

As we prepare to go camping I can't help but wonder is the "to bring" list could possibly be any longer"? It always seemed that the preparation for going camping took much longer than it should. But then again, as one that is notorious for making lists, I always bring way too much and then tell myself that next time I'm not going to bring so much. Next time around, the cycle continues and I still bring way too much.

This year we have a lot to add to out list of things to bring. Also, this time a camp site with electricity is needed. It seems ironic that we will need electricity at a time when you are supposed to be "roughing it". However, in this day and age, don't most campgrounds have electricity? Don't most campers have a TV or portable DVD player? The campground we are going to even has WiFi. What was once synonymous with "roughing it" is no longer the case, and I'm completely good with that.

Anyone with kids understands that the camping list automatically doubles once they are on board. Emma has her own list, and I thought I would share this list. Hopefully others will come to peace with their list after reading this and think, "I guess my list isn't so long after all".

Here is Emma's camping list:
- oxygen concentrator
- spare oxygen tanks (both large and small... you never know if the power will go out and you need to use the large tank)
- extra cannulas
- special tape to put under canulla
- tape to put over canulla
- scissors
- pulse oximeter
- spare sensors
- plug adaptor (you never know if you will need)
- pump
- large syringes
- extra extension
- extra button
- special syringe to check/fill button
- bottles
- formula
- corn syrup (we have to add to her formula)
- water
- bottle brush
- dish detergent
- baby food (let's hope she will actually try some)
- baby spoons
- baby crackers (maybe we can get her to put it in her mouth, we can
hope, can't we)
- medications w/ syringes
- diapers
- wipes
- clothes
- pacifiers
- burp cloths
- quarters (we will definitely need to do laundry while there as she spits up
so much and she'll go through all her burp cloths... and she has a lot)
- toys (last, but certainly not least)

I'm sure I'm forgetting something on this list. If so, I hope we don't forget to bring it with us!

11 months old

Emma is now 11 months old. She still cannot sit up on her own, cannot crawl, cannot stand up on her own, has been on oxygen 24/7 for over a month, and we still don't know any answers. I know this status may sound the same as when I first started this blog. With that said, she has come a long way since our hospital trip in December, six months ago. She has consistently been on the growth chart for a couple months now. She is much more interested in playing, babbling, will say dada, will (rarely) say mama, and is in general a very happy baby.  Others may look at her and see how far behind she is. I look at her and think about how far she has come since December. I use December as a baseline only because that was her first official "hospitalization". I look at her pictures and see a dramatic difference from December to now. I look at her December picture and I first think, how did I let her get to this point? But then I have to change my thinking because I know it wasn't a matter of "letting her" get to this point. It's just, simply put, she wouldn't eat. I have accepted that I couldn't have done anything differently. In regards to her eating aversion, you can make a four year old sit at the table until she eats her carrots; you can't make an infant eat. Even after numerous specialists help, she just wouldn't eat. Now, she has a means of eating. I don't know how many people we've had to tell, "she can eat a full bottle in a reasonable time period, she just doesn't want to".

Over the last few months I have found comfort knowing that, although having a feeding tube isn't typical, she's not alone. I've found a Facebook group focused on people with feeding tubes. I feel like I am now a part of a selective group of people that are focused on sharing questions, frustrations, medical situations, and general topics all related to feeding tubes.

We still don't have any answers for what is going on with Emma. With each test she goes through I hope they will find an answer. It is discomforting to think that you want a test for a rare genetic disease to come back positive, but if we know what condition she has, then we can work to treat (hopefully) whatever it is that she has had. Just yesterday she had a lung biopsy to see if this will give us answers.

The biggest impact to everyday life in recent months has been the fact that Emma is on oxygen 24/7. Wherever we go, we need to bring an oxygen tank and her pulse oximeter. We can now pretty quickly get it hooked up to the stroller. The biggest difficulty is transporting her around the house.

To the left, Emma at 5 months.

To the right, Emma at 11 months.

Emma's 13 Day Visit to the Hospital (9 months old)

We brought Emma to the doctor on April 28 due to some breathing issues over the previous 24 hours. It wasn't long before she was in the emergency room, followed by a helicopter ride to Dartmouth hospital. Initially, they thought the right side of her heart was enlarged, and she was identified as having dilated cardiomyopathy. After three xrays, three echo cardiograms, a catscan, numerous blood work, urine samples, a skin biopsy, heart catheter, broncoscopy, and thirteen days in the hospital, we still do not have an answer. There are still outstanding blood samples and skin biopsy results that have not come back. She has blood as far away as the University of Alabama that is being analyzed. Some of these tests take weeks for results. The skin biopsy, for example, takes twelve weeks for results. Some of the neurological tests are testing for abnormalities with her oligosaccharide levels, enzyme abnormalities, and probably other things as well.

During the length of her stay, Emma's oxygen levels have been low. When we first got to her primary hospital, her level was 67%. The minimum they like to see is 90%. She is currently on oxygen at home, and we have no idea when she will be able to come off of the oxygen. It is a little frustrating that when she had her g-tube and button surgeries she had borderline oxygen levels (upper 80s, low 90s) and this wasn't a concern at the time. The logistics of being on oxygen at home are still awkward, but I'm sure it will become second nature after doing it for a while.

Following this hospitalization, Emma has had blood work to test for surfactant protein deficiency. This is a rare genetic condition that the pulmonologist has only seen about half dozen times in her career, and has not seen any cases of this at the hospital where we were at. The research for this deficiency really only got started about ten years ago, so there is not a lot of information out there about this yet. Therefore, it is hard to make long-term prognoses. If the work-up for this deficiency (which takes 4-6 weeks) comes back normal, the next step is likely to be a lung biopsy. If this test comes back abnormal, we may be closer to an answer. Because she was scheduled for blood work, the neurological metabolic specialist had them take some blood to test for an enzyme disorder.

9 months old

Emma turned nine months old yesterday, and I would like someone to tell me where the time has gone. Today she will get weighed by the visiting nurse. She hasn't been "officially" weighed for about four weeks now. I am looking forward to seeing what this number is that we've been following so closely. I am a technical person and love working with numbers, so it is odd to me that this number, the pounds and ounces of my child, is the number that has influenced so much of my life over the last nine months. I even have a spreadsheet with her weights charted over the last few months. Obsessive? No, I think this is just my inner geek coming out in the form of the need to make a spreadsheet for anything and everything.

She is still eating every three hours. I recently read that 70% of babies sleep through the night by the 9 month mark. Emma would sleep longer if she could, but we have to wake her up every three hours (three hours from start feed time to start feed time). I have no idea how long she would sleep if we let her. A full night's sleep is becoming a distant memory to me. There are times when we do fall behind on her feedings and these usually occur during the night or when go places. I certainly can't say that we've never fell behind on her feedings for the day, but she does get her 8 feedings per day in probably 88% of the time.

I think Emma has been making good progress over the last couple months. I am equally concerned for her weight as I am for her development. She is behind in her developmental age. She cannot sit unsupported, she cannot roll from her back to tummy, etc.

A little summary for those just chiming in and may not have been following since this blogs conception. Emma is classified as a "failure to thrive" baby, and has a mickey button for assistance with eating. She has not been diagnosed with anything, although she has had numerous blood tests, urine and stool tests, quick scan MRI, head ultrasound, full MRI, EEG, EKG, upper GI test, a chromosonal microarray test, and an EMG. I may be forgetting something her, but, to summarize, she's had a lot of tests to try to figure out why she can't gain weight and why she doesn't want to eat. She's been seen by a GI specialist, speech therapists, physical therapists, genetics, nutritionist, metabolic neurologic, neurologists, and others. She is currently on medications for reflux and muscle relaxer.

8 Months Old

As noted in another posting, Emma got her Mickey button at 8 months old. This is more conventient than the tube, but is currently a bit pink/blistery/oozy. After talking to the nurse, it sounds like this is granulation tissue and is quite common. She suggested using triamcinolone creme to help reduce this.

While under sedation for the mickey button surgery, an EMG (electromyogram) test was conducted. This test evaluated the electrical activity in nerves and muscles to determine if there are abnormalities in the way nerves transmit impulses or to the muscles. Preliminary results from this test appear normal.


Her formula has changed to Pregestimil. According to the packaging and on-line information, "the fat blend in Pregestimil Lipil consists mostly of a special type of fat called "MCT oil," a "medium chail triglyceride oil." Enfamil's Pregestimil Lipil's unique formulation is designed for feeding babies with diseases or disorders that make it difficult for them to absorb the fat blend in most other formulas." She seems to be spitting up less and not quite as uncomfortable on this formula.

We have asked numerous times in the past whether Emma should change formulas and the answer was always to "just stay on what she's on". We asked about hypoallergenic formulas recently as we were wondering if she might have a protein sensitivity or a food allergy. The doctors don't seem to think she has a food allergy, but were agreeable to giving the hypoallergenic formula a try. It appears to have decreased her overall volume of spit ups. She does still have one or two big spit ups a day (and additional minor ones). She still sometimes get uncomfortable, but this appears to be less in frequency and intensity. She still has her bad days, but overall we think the formula is more appealling to her sensitive tummy.


It has been two weeks since her last weight check in. At that time she weighed in at 13 pounds, 9 ounces. She had a very good growth rate at her last check in (about an ounce per day). This is a typical growth rate, but atypical for Emma. Her growth rate has typically been much less than this. I am looking forward to see what she will weigh at her next weigh in.

Welcome To Holland by Emily Perl Kingsley

Although Emma has not been diagnosed with a disability, sometimes I feel like I'm in Holland...

Welcome To Holland by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."