Sometimes I wonder why they even bother to send us home...

I apologize for the LONG time in between posts.

Things have been busy.

I try to update our FB Life with Lily page daily though

http://www.facebook.com/pages/Life-with-Lily/311949542190053 

So basically we had two blissful weeks at home.

And then we decided to feed her.

When I say decided to feed her I mean we were approved by all her drs to feed her...

And She LOVED the 1/2 oz of thickened formula she ate by mouth.

But within hours she began to not tolerate her feeds.

She started having diarrhea.

She lost all energy.

Then because her Fundo has failed she started vomiting.

I was hoping it was just a flu but the last time we tried to feed her by mouth

this EXACT same thing happened.

I tried everything I could to help her at home but she kept getting worse.

We had to take her in. 

Withing 10 minutes of being in the ER they were admitting her.

Then while we were sitting in the Er 

Lily just randomly passed out.

She was just sitting there then she was arching her back and went completely ridgid

her eyes rolled back and she lost consciousness.

This seemed similar to some of her earlier events but she didn't stop breathing.

I yelled for help and people came running.

They said it looked like a seizure.

We were admitted for stay #23 on Monday Nov 5th

 They did an EEG to see if there was any sign of seizure activity.

The EEG showed some slowing of her brain waves wich

"might or might-not mean it was a seizure"

They decided they wanted to just wait and see if she had another one...

Also,

The Drs didn't believe she 

"wasn't tolerating" and decided she just had a stomach bug.

(whatever happened to that note that was supposed to be in her chart that said to listen to mom? They told me 4 or 5 stays ago that they would listen to my instincts and have me be a part of the "team"...

I guess since she has a trach now all that's changed?)

They put her on IV fluids for a couple days then quickly raised her feeds back to her goal rate

 of 43ml an hour for 24 hours a day.

And by Thursday morning we were going home.

I Told them we would probably see them again in a day or two when she started not tolerating 

but they still believed it was a flu and she was fine now.

I let their optimism carry me home.

I mean their arguments made perfect sence.

(if I ignored her past history AND believed in CRAZY coincidences)

And It COULD have been just a flu...

She got home and slept for 18 hours straight.

(something that would NOT have been possible in the hospital so maybe

 we went home just for that reason)

Then she woke up and the vomiting started again...

It was just twice on friday morning and again in the afternoon.

The diarrhea was gone so she wasn't getting dehydrated 

and I really wanted her drs to look at her monday in their clinic

instead of have whatever Dr was on call making decisions based

 on their brief skimming of her HUGE file.

But On Sat Morning her stomach wasnt emptying AT ALL and the vomiting was 

so severe and she was vomiting out of her trach as well.

Vomiting out of her trach is a BAD sign it means its going into her airway.

So Saturday We went BACK to the hospital. 

For stay #24.

 And thats where we are now.

She is back on IV fluids and the idea is to slowly raise her feeds and see where she 

begins to stop tolerating and go from there.
And we just have to wait it out
and try to keep Lily occupied...

Shes not happy about being here again!

The Trach

Lily has a Trach.

It still feels a bit surreal.

When She is awake and active and looking at me with those big blue eyes

it seems to have already become a part of her,

almost natural.

I already am forgetting its there (kinda)

But...

When she is asleep or I get out of the room for a few minutes alone

It hits like a TON of bricks.

I don't know why getting the Trach has been so much harder (for me) than all the other surgeries combined.

For Lily, it seems to have been the quickest recovery,

with surprisingly the least amount of pain.

But for me this has tilted my world on its axis.

I don't know if its everything building up and the trach is just the straw that broke the camels back,

Or if its all the social stigmas that come with the trach,

 Or the reality of how much having a Trach will change our already medically complex lifestyle

Or if its just terrifying because its her airway and it is DANGEROUS.

Probably a mixture of all of the above.

But, 

I do know that this was the Right decision.

She is now having multiple airway closing events a day

and they are MUCH longer than ever before.

But because of the trach she doesn't turn blue or pass out.

She is able to keep breathing because the part of her airway that collapses is above where the trach is.

The Trach came at exactly the right moment. 

If we hadn't gotten the trach when we did, 

She would most likely be gone by now, 

or at best have some serious brain damage.

The Lord works in Miraculous ways 

and I know he is working miracles through My Lily girl.

And then also there is the Miracle of her voice.

She SPEAKS!

The Nurses and Drs are baffled.

I know its because of all the faith and prayers of those who love her.

Before Lily, the earliest a child had spoken after receiving a trach was 1 week.

Lily spoke after 12 hours.

She woke up the next morning after surgery looked up at a balloon and said

"ELMO!"

and I was too amazed to even cry but then she looked at me

and said

"Mom, Mommy, mommy"

And as I went to pick her up she looked at the 

nurses and Dr and pointed her finger at them

(as if they were in trouble)

and said 

"No, no, NO!"

Not only did she still have her voice she still

has her spunk!

This Picture was taken about 18 hours after surgery

And she is SMILING!!!

She was in the ICU for only 5 days after surgery instead of the standard 7

but 

She still wasn't tolerating feeds.

So being faced with TPN at home yet AGAIN...

We tried something a bit different.

Her Gi suggested injecting Botox into her pylorus

(the muscle at the bottom of her stomach)

It meant more anesthesia, but we had to try.

And so far it has WORKED!

She is finally at goal feeds.

No pain 

No shaking 

No screaming.

However, 

there are still complications.

The anesthesia sent her into a metobolic crisis.

Her heartrate soared to the 200's, her respirations tripled, she developed tremors

 and she spiked a fever. 

Slowly her respirations returned to normal

 and her fever subsided but her heart is still higher than it should be.

But all in all, it looks like she is pulling out of crisis mode...

Also,

When they went in to inject the botox.

they noticed her fundo was ripping out.

And once we got to goal feeds,

 she started refluxing her food and then aspirating it.

They way we know this is,

 her stomach contents are leaking out of her Trach.

This is bad news as it is a guaranteed  way to get a pneumonia.

So we are messing with the rate and volume of her feeds to see if we can find a happy medium

that will allow her to get her full nutrition/hydration needs but keep her stomach calm enough so she stops refluxing and subsequently aspirating.

And then yesterday her trach started bleeding again.

Just small amounts,

but it shouldn't be bleeding anymore.

I am afraid we are headed for yet another surgery to fix the Nissen Fundoplication.

But we will cross that bridge when we get to it.
We will be in the hospital
AT LEAST another week and,

As for now,

I am just so greatful that

the Trach is doing its job of keeping  her breathing and ALIVE.

This video is of Lily speaking with the trach and it also shows what her trach looks like 

without the mist collar attached 

(the blue tubing with the clear mask in the other pictures)

So NOW they finally take me seriously...stays #18 and 19

So I haven't blogged for a while.

Things have been...busy...

So let me catch everyone up on the past month.

On June 30th we were finally approved by Lily's Dr's to fly so we flew up to Utah.

Shaun's sweet Grandma was dying and she wanted to meet Lily before she died.

So We jumped on a plane and made the short hour long flight to SLC.

Lily did great on the plane, and I was very excited about it.

We drove straight to Grandmas so we could see everyone.

And it happened again.

 

She stopped breathing.

 

Turned blue and passed out in my arms.

 

Shaun took her laid her on a bed and started CPR.

But the rescue breaths couldn't get passed her throat.

Something seemed to be blocking her airway.

So he did some chest compressions 

Which did the trick. 

She started breathing and woke up.

She cried while I just cried and held her.

(I am so glad Shaun had JUST renewed his CPR certification the week before)

We called the Drs back in Phoenix and they decided it was probably just an isolated incident

due to the change in pressure and altitude from the flight.

And once she stopped crying she was fine.

(I must admit, I started to second guess myself and wonder

if this was just a "breath holding spell" and not laryngospasms despite the fact that her airway seemed to be blocked when Shaun was giving CPR...

but more on that a bit later)

We had a nice visit and it was GREAT to get to see family.

Although it was heartbreaking to see Grandma dying, 

We were so glad Lily got to meet her, 

and everyone else she hadn't had a chance to meet yet!

On the 4th of July we went to a park for a BBQ

and Lily had her first taste of playing in the sprinklers.

The next day We went to a birthday party for Lily's adorable cousin.

At this party her diarrhea became much much much worse.

In the next 28 hours she had more than 20 diapers.

She was hurting. 

We had to take her to the ER.

Luckily there is a Children's hospital in SLC.

Most typical hospitals aren't equipped to deal with 

Lily's "complex medical nature" even those with pediatric wings

And so we were very fortunate to be near a children's hospital 

where they had the tools and knowledge to be able to accommodate

to her needs

(IE: the pediatric sized port, and g-tube)

We got to the ER and she was dehydrated

( No surprise there, who wouldn't be after diarrhea like she had?)

But she was also significantly anemic, 

and her blood sugar was 50,

which is low but not horribly low.

An ideal blood sugar for her would be between 80-110.

(remember that for later)

So they admitted her.

Primary Children's Medical Center is a great facility.

Even though it is TONS smaller than PCH,

I almost liked it better.

The Doctors were very respectful and it was nice to

get some fresh eyes to look at her and find some things we had been missing

(like the anemia, and possibly the blood sugar)

We were there for only 3 days.

Just long enough to get her stable enough and filled up with fluids

 for us to make the drive back to Phoenix.

We had to drive back because they said Lily shouldn't fly again because she had stopped breathing

just hours after getting off the plane.

On the way back to Phoenix

we stayed the night at Shaun's old friends house in Saint George.

That night Lily started holding her tummy and saying ow

So I vented her like I always do when she does that

and I got this out of her tummy

yup that's blood mixed with her formula

And this picture only shows part of it.

There was more all along the tubing and I had to fill 2 syringes because there was so much just sitting in her stomach.

All in all, I probably vented almost 4 ounces out of her tummy all mixed with blood.

The good news was after we talked to the Dr's they thought it was safe enough to bring her to Phoenix the next day and get checked out.

So that's what we did. 

We drove the rest of the way the next morning and Lily did great!

 And even better I didn't see anymore blood all the way home!

 

The Dr's back at PCH didn't seem to concerned when they saw her and they ended up sending us home

without having to admit us.

 

About a week later I vented blood from her stomach again.

I called the Dr, who called another Dr, 

who then called me and said they wanted to admit her for a BUNCH of testing.

I must admit, I was in a Circle K holding Lily when they called me.

I had just left the funeral of an old dear friend so I was already emotional,

But I totally embarrassed myself by bursting into tears in the middle of the store.

I just am tired of having 

SO MANY HOSPITAL STAYS.

And I hate that this is so hard on my sweet little Lily.

We got admitted around 4 on a wed, which meant nothing would really happen until the

next day except for xrays and some blood work.

Thursday also brought more sitting and waiting.

Friday morning we were scheduled for three different scopes and 

ANOTHER EEG.

Lily had been acting odd all morning on Friday but during the EEG she really started to scare me.

She was pale, and couldn't even sit up on her own, I had to hold her up.

Her eyes kinda glazed over and she stopped responding to my voice.

Here eyes were open but it was like she wasn't there.

 

I told the lady I thought something was wrong, but she said she was  just tired.

I then told another person that Lily was acting weird and was really scaring me

and they ignored me as well.

It wasn't until we got back to our room,

and her AWESOME nurse came in that someone listened to me

The nurse immediately took her blood sugar and she was 21!!

She called the Dr's and started giving her some emergency meds.

They were saying they didn;t know how she was still consious,

that she could slip into a coma or a seizure at any moment.

 

she had only been given 10% of the recommended dose of medicine

when they checked her blood sugar again to make sure it was rising...

It had jumped up to 385!!!

So they brought in another specialist.

Endocrinologists.

The regular Doctors also came in and sat down with me and told me that they were 

sorry I wasn't listened to before and they have it in my chart that

I am to be listened to, that I (as her mother) am good at reading the subtle signs of distress 

and that I will be taken seriously from now on!

 

BOO-YAH!!!

Anyways,

They now had to do a bunch of tests to figure out her new blood sugar issue before we could even think of going home,

but in order to do the tests her blood sugar had to drop again.

So We had to take her off her feeds and check her blood sugar every 1/2 hour until it dropped.

After a while she became dehydrated and stopped bleeding as much so they had to poke her 2-3 times every 1/2 hour.

By the next morning she had had 35 pokes throughout the night 

and her poor feet were stained in blood.

I HATED allowing them to do it, but we had to know how to treat the blood sugar issue

before we could go home.

Blood sugar issues aren't something to mess with.

Then because of the blood sugar issues we had to postpone the scopes that she had scheduled

until the following Monday.

 

She had three scopes planned.

An EGD(stomach scope with biopsies),

a sigmoidoscopy (rectum scope with biopsies),

and a bronchoscopy (lung and airway scope with biopsies).

 

So apparently during the procedure

(after she was asleep but before they had begun anything else)

She stopped breathing again.

Because they saw it they confirmed it was a laryngospasm.

The anesthesiologist left claw marks on her chin from where he had to

hold the oxygen mask on so tight and FORCE her airway open.

He said while it does happen while people are under anesthesia,

It was the quickest one he had seen,

They now have NO doubt that these events she has been having 

ARE LARYNGOSPASMS.

And I don't have to second guess myself either.

They said her larynx is incredibly touchy and it just likes to spasm shut at the slightest irritation.

They then proceeded with the scope and found out that she had

"large amounts of frothy liquid" all throughout her airway and into her lungs as well.

The tests on this "frothy liquid" are still pending, however they believe it is stomach acids

and that she is refluxing past the fundo

(which isn't supposed to be able to happen)

Anyway, she has a lot of liquid in areas it shouldn't be and that's a big concern.

 Then after we got her safely back in my arms and back into the room last night, she spiked a fever

then her heart rate rose to the 200's and her oxygen kept dropping.

She finally stabilized after a few hours and has been stable ever since

So that's where we are now,

just sitting in the hospital 

waiting for test results so

they can know how to treat her and where to go from here.

I do know we will now be checking her blood sugar at home regularly,

and we get to have her back on our "good friend" the apnea monitor while she is sleeping.

(she was on an apnea monitor until she was 11 months old)

Tomorrow we should start getting some test results.

They believe that she was/is in a "metabolic crisis"

which is unfortunately a part of Mito,

But it often means the disease is progressing.

I hope it never happens again...

Honestly I hope she never ever ever has another symptom again.

I wish it would just STOP.

It hurts my heart that she is only 18 months old

and has had 19 hospital stays.

But she is a fighter.

She has such a happy spirit and she is so strong willed.

She LOVES life and it shows.

playing peek a boo from her princess castle hospital bed

happy girl minutes before going back for the scopes

You would never know she had stopped breathing on an operating table less than 24 hours before this was taken

 You would never know from just looking at her

that this little angel is fighting for her life.

She is so strong.

I admire and respect her strength, her spirit.

I LOVE HER!

 

 

 

Your questions answered!

Q: How long will Lily have the tube?

A: Unfortunately there isn't an exact answer. She will have the tube as long as she needs it to survive. At this point she isn't improving at all in her dysphagia, actually she is getting worse. If she keeps getting worse they are gonna take oral feeding completely away. And over the past couple weeks she has started refusing again. It took 9 months to get her to accept more than 3 oz at a time, and now she is back to 3 again. So, as of right now there is no end in sight as far as the tube feeding goes.

Q: How long do her feeds take/can she move around while being fed?

A: She gets fed for 10-12 hours continuously every night while she is sleeping, and for a while after she wakes up in the morning. She is on a relatively slow rate of 55ml(approx. 1.8 oz) an hour. During the day she has a goal of 12oz by mouth, I try and give her 3 bottles of 4oz each, but as she refuses I then have to bolus feed her (put the formula in a giant syringe and push it slowly through her tube). Occasionally it isn't safe for her to eat by mouth at all (like when she is super sick) So she sometimes has to go on continuous 24 hour feeds. She can move around while being fed I just have to follow her around holding the pump. As she gets older and hopefully stronger there is a backpack she can wear to make the pump more mobile.


Q: Can she be potty trained when she is old enough?

A: Maybe...kinda. It all depends on how weak her core muscles are and  weather she will have the ability to strengthen her muscles enough to be potty trained. Then there is the feeding tube. If she is strong enough there is still the issue of her being fed continuously while she is sleeping. From what I understand it is sometimes possible to potty train tube fed kids during the day but not a realistic goal for over night potty training. She will need diapers at least overnight as long as she is fed overnight...

Q: Does her tube hurt her/is it sensitive?

A:The tube doesn't hurt her unless she tugs on it or it gets caught on something. I have to spin it daily (which she doesn't even notice) and We have recently discovered she is super ticklish all around it and will actually laugh out loud when we poke her skin around it (laughing out loud is exceedingly rare for her).


Q: What is it that makes her able to handle some foods and not others?

A: Eosinophilic Gastroenteritis is the main culprit for her being so sensitive to so many foods. Because of her Eoe, she has many many allergies/intolerance's. Then there is also the issue of her dysphagia/silent aspiration, For things that are safe to eat from an allergy stand point, they still aren't safe for her to swallow. Like water for example, every bit of water that is swallowed goes into her lungs, so if I were to give her a 6 oz bottle of water she would drink it and would drown. On days when she is teething and has excessive amounts of drool we have to constantly listen to her lungs because it goes to her lungs and she doesn't consistently cough it up (silent aspiration).


Q:Will Lily be able to attend regular school?


A: Honestly, probably not. Her immune deficiency makes public school way to dangerous. Plus the nature of Mito is, it is progressive, and so by then she most likely will be sicker than she is now. Arizona's special education programs (in my opinion) are sorely lacking. She will either be home-schooled, or preferably she will go to a private school where they are equipped to handle medically complex children. So far it looks like she is cognitively fine, even gifted (YAY!) as far as intelligence goes, so that also poses a challenge for schooling her because finding a program that can tailor to her physical needs but still challenge her intellectually is hard to come by.


Q: Is Lily a million dollar baby? (Do her medical bills before insurance equal one million yet)?

A: If my calculations are correct, then yes. Just between her hospital stays and her IVIG alone equal 1 million. That doesn't even include all her doctor appointments, medicines, equipments, therapies, etc. 


Q:Are we considering having more kids?


A: This is a tough one. We definitely will have more kids there is not question in our minds about that, but as of right now it looks like we will be adopting. The percentage of having another child with Mito is extremely high, and well, lets just say it is not something we are taking lightly. The decision will be made through much prayer and meditation on the subject and ultimately we will do our absolute best to do God's will. 
 


Q:What does the future hold in store for Lily.


A: This is what my nightmares are made of now. Mito is progressive that much we know. But the thing we do not know is how fast it will progress or what will be affected next. Most common symptoms include:

• brain: confusion, memory loss, headaches, seizures, developmental delays, and stroke-like episodes
• nerves: pain caused by nerve abnormalities (neuropathic pain), gastrointestinal problems linked to nerve abnormalities, abnormal sweating, and fainting
• skeletal muscles: muscle weakness, muscle cramping, muscle pain, loss of coordination, exercise intolerance, and poor growth
• liver: liver failure and low blood sugar (hypoglycemia)
• heart: heart muscle weakness and disturbed electrical signals in the heart (called heart block)
• kidneys: abnormalities that cause difficulty with absorbing nutrients and electrolytes back into the body (called Fanconi syndrome)
• ears: hearing loss
• eyes: eye muscle paralysis, progressive loss of vision
• pancreas: diabetes (a group of conditions characterized by excessive urine excretion and persistent thirst) and pancreatic failure
• Sensory processing disorders, or autism

Other symptoms include failure to thrive in infants, poor growth, short stature, fatigue, respiratory disorders, swallowing difficulties, and increased risk of infection.

Read more: http://www.answers.com/topic/mitochondrial-disorders#ixzz1mV1wSD4r

Only 20% of children with infant onset Mito will make it to adulthood, and out of those 20% very very few will see their 30th birthday. It is a cruel and sinister disease.

Not two people get mito exactly the same way, and just because somethings aren't listed here doesn't mean it can't be caused by mito. Mito is a guessing game at best, and since there is not cure and no real treatment we just take one day at a time and we and her doctors are forced to watch every little change closely and decide if it is a symptom or a personality quirk or a "typical baby thing". Kids with mito can go from acting and seeming fine to complete system shutdown within hours. That is why everything is watched so closely. The sooner we catch a new symptom the sooner we can stop it or at least slow it down, if possible.

The future terrifies me. I am doing my best to live here and now, because that is where we are and that is where I have her safe in my arms. We have to just keep swimming. And we will accept God's will in ALL things. He is in control and He knows whats best in EVERYTHING. I trust him with my life, and soul. And I trust him With Lily's as well. I will have her as my daughter forever. That I know. And no matter how long any of us are on this Earth we will be together forever and ever in Heaven. 

A little ASL with your broccoli?

So the GI and the dietitian cleared Lily for 

sweet potatoes, pears, and broccoli.

They must be organic or Beech Nut Brand,

They must be thickened to "double honey" consistency,

she can only have it on days when she shows no signs of 

coughing, excess drooling, sneezing, wheezing, or teething...

Saturn and Venus must be perfectly aligned with one of Jupiter's moons

And it MUST be snowing in Phoenix...

OK, well maybe not so much about the planets being aligned and it snowing in Phoenix...

but you get the point...

So the days she is allowed to eat food by mouth are few and far between.

She finally had a day when we felt it was safe to feed her.

So we made baby food broccoli and mixed it with sweet potatoes...

I had also been trying to teach her basic ASL (American Sign Language) for months.

just watch...

 

This was the first time she successfully did the sign for "more" and she kinda does the sign for 

"all gone"... which I took for "no more"

I have learned if I try and force once she turns her head I will end up cleaning up puke.

So I don't push it.

She successfully ate about 

2 TABLESPOONS!!!

WOO-HOO!!

But then about 5 minutes later

We hear signs of aspiration.

She started wheezing,

and noisy breathing

and it sounded like there's stuff in her lungs

and I just have to pray she will cough it all up and

wont get pneumonia...

Looks like this time she got it all up...

But we wont be able to try "food"

again for a few days,

especially since it looks like her cold is back now...

GI diagnosis'

From the minute Lily was born she has had trouble with feeding. Her GI issues are vast and complicated to say the least. I will start with her first actual diagnosis.

GERD: Gastero Esophogeal Reflux Disease aka Reflux. Lily was diagnosed with "an extremely severe case of Gerd at 3 months old. Basically everything that went into her stomach came right back up. I mean basically EVERYTHING! She was 6 lbs 8 oz at birth and by 4 months old she weighed barely 8 lbs. She had only grown 1 inch longer as well. I could see every bone in her frail little body. She was Diagnosed as Failure To Thrive (FTT). By the time they gave her her first feeding tube she couldn't lift her head, all facial expressions had gone away. She was almost lifeless.The doctors were worried about brain damage from malnutrition. She was starving to death and no matter how much i fed her it made no difference. She got her Ng tube when she was 4 months old. The feeding tube saved her life. I will go more into feeding tubes in a later post.

 Sandifer syndrome: In super rare cases of super severe GERD Sandifer Syndrome can occur. When she was 6 months old she was admitted to PCH for apneas(not breathing) and "seizure like activity". About 10 times a day Lily's right arm would start flailing uncontrollably, her tongue would start thrusting, her head would roll back, her back would arch over and over and her eyes would roll back in her head. And she would scream. After 2 brain MRI's, and 2 EEG's, a Cat scan, and an ultrasound of her brain through her fontanel. They ruled out seizures. So I started researching and found a YouTube video of a little boy with "confirmed sandifer syndrome" It was so similar to Lily. We went to a doctor who referred us to another doctor who referred us to another doctor who confirmed Sandifer Syndrome. Apparently when reflux is severe enough it affects the nerves that also control movement and causes spasms. It is controlled only when the reflux is controlled. So we just give her a cocktail of anti-reflux meds and it seems to work. So if I forget to give her her medicine Its OBVIOUS because she has "sandifer fits". Luckily this diagnosis doesn't cause any physical harm its just a bit embarrassing for her as she gets older.


Silent aspiration: This one is simple to explain but it scares me. Basically anything Lily swallows that is thinner than the thickness of Honey goes into her lungs. Water or food in lungs = BAD!  She can't drink water. Her formula must be thickened to a "Honey Thick consistency" with rice cereal. And she has to drink it all from a gerber med flow bottle nipple. I tried to drink honey-thick liquid through a med flow nipple and ITS HARD!. My cheeks were sore. Its no wonder she gets exhausted after just 4 oz. 

Dysphagia: Dysphagia is a weak or non existent swallow. Lily's is weak. When she was born it was non existent. It is treated with a feeding tube. A short documentary on You Tube explains it so much better than I can. Here's the link: http://www.youtube.com/watch?v=MrbEUDO6S5U&sns=fb
(copy and paste it into your browser)


Eosinophilic Gastroenteritis: An Eosinophil is a white blood cell. In EoE patients(that's the abbreviation for Eosinophilic disorders) eosinophils gather in large quantities in either the esophagus, stomach, or bowels. In Lily its the stomach and bowels. It causes inflammation and damage to the stomach and bowels. It causes severe pain, vomiting, and diarrhea. In severe cases it is treated with a feeding tube. EoE patients are on very restrictive diets. In Lily's case just Beech Nut rice cereal, And Neocate, with an occasional and very conditional bit of thickened sweet potato baby food. There is no known cure.

Laryngomalacia: basically the vocal chords are too soft an floppy. They also don't always move. There are times when they are barely moving and that is why she has stopped breathing so many times.If your vocal chords freeze up then air cannot get to the lungs. She was on an apnea monitor until she was 10 months old. She used to stop breathing and actually change color up to ten times a day. She had recently gone 4 months without an apnea until last week. :(   It also affects her speech. Some times she can say Mama and other times she can only mouth the words and no sound comes. We don't know how long this will affect her. It is quite possible she will go through life being able to speak some days and not on others. Only time will tell. There is a surgery that can fix it but its incredibly invasive and dangerous and she would have to have a trach for a while. We would really like to avoid that...


Allergies:Lily has many many allergies. Allergies go hand in hand with EoE and also because she is missing The IgM immunoglobulin. IgM is what deals with allergies and allergic reactions. We know she is allergic to many many foods, we just dont know how many or which ones yet because she is on such a limited diet and it is not safe for her to try foods because of her swallowing issues.  We do know she is allergic to milk and soy. She is allergic to most adhesives especially bandaids, and most medical tapes. We know she is NOT allergic to Beech Nut rice cereal and Sweet potatoes.  She has a bad reaction to any other brand of rice cereal like Gerber for example. Only time will tell what she can have and which allergies (if any) she will grow out of.

I think that about sums up her GI diagnosis'. Sorry this post was pretty bland. I wanted to get the technical descriptions outta the way. She has a few more non-GI diagnosis I will go into on another day.