Feelings

I think that feelings are a lot of times underrated.  We all feel things at certain times yet it is hard to put those emotions on to paper.  This post is going to be me trying to put them all out there and let you all know my honest emotions about how I have felt.  I hope one day Lily can read this blog, when she is old enough to understand, and see that although it hasn't always been easy, I wouldn't trade one ounce of it for anything in the entire world.

"God will give never you more than you can handle."  This is honestly my motto for life.  I keep trying to think and remember that I can get through anything.  I repeated this to myself over and over and over, and told myself that I would make it. 

When she first had her seizure I remember the world spinning.  I couldn't form a coherent thought.  I remember the feeling of drowning without water.  I was looking at faces; everyones faces, trying to read their emotions.. trying to see what they thought was happening to my Lily.    I remember touching her, her skin, her hair, her tiny fingers and toes, and just trying to feel her to make sure she was still there.  The feeling of helplessness was overwhelming.  There were 15 people in the room and I couldn't fix it.  I couldn't hold her close and whisper sweet lullabies in her ear because the blood had to be drawn, the wires had to be hooked up, and she had to be watched.  When I could finally hold her I just couldn't put her down.  I didn't want to, I couldn't part with feeling her soft breath on my chest.  

I remember when the thought of Turner Syndrome finally set in.  At first it was relief.  She could live with Turner Syndrome, she could walk, talk, breathe, and just be on this Earth, something she couldn't had it been CDG.  When the feelings of what TS fully meant set in I felt a sadness that I couldn't express.  Whenever a mothers little baby girl is born, dreams are born with her.  I thought of her playing with dolls, and then the lunch dates we would have followed by mani/pedis as she got older.  I thought about how I would stress she get A's in school and get into a prestigious college because no girl of mine would EVER be dependent on a man!  I remember thinking about what her husband would be like and how beautiful her children would be some day.    It never once occured to be that she could be sick or have trouble with these things.  The only time I cried when TS was being fully described to me was when they told me that she would not be able to have children.  It felt like someone had punched me in the gut.  For as long as I can remember I wanted to be a Mommy.  I felt like it was what I was meant to do in life and I come from a long line of FANTASTIC Moms.  I remember sitting around with my neighborhood friends and playing dolls and picking out my future children's names (never got my Michelle! haha). I still wonder how one day I will tell her the having her own children is not going to be an option for her.  She may one day find a fertility doctor to try in vitro with her, but it is risky and the chances are not great for her to conceive and even less to have a healthy baby.  I feel sad about it.  Heartbroken.  

Sometimes I worry about her being picked on for being so small.  I see it at preschool already because lately the children have been calling her a "baby."  I don't know if I am doing the right thing by not letting the teacher know what is going on, but I really really want Lily to learn to deal with these things.  This is something she will forever be encountering.  Children can be mean (not as mean as teenaged girls, but still mean).  They have no filters for what they say and don't understand empathy yet.  She will have to learn her own ways to deal with ridicule.  Obviously if it got to the point where she was coming home crying I would intervene, but we aren't there.  She usually has some sort of witty comeback, and I am all the more proud of her for it.  Her personality and sass is what will attract people to her.  Her Auntie describes her as "magnet" as someone who are you are immediately attracted to, and who wouldn't want to be described that way?  Her personality makes up for what she lacks in height.  

When she was diagnosed with Celiacs my first thoughts were, "The poor thing, another thing that makes her 'different'." But honestly, that is the least of my worries these days!

Yesterday a very wise woman who I really respect told me that if I am sad about it, Lily will be sad about it because she will think she is different.  I never let her see my sadness, and that is ok for now, but soon enough she will be able to feel and sense when I am having one of my days.  I am a constant worry wort and if I wasn't worried about this, it would for sure be something else.  I get asked a lot what it was like to find out she did have TS and how I felt.  So there it is! My emotions for today! 

I saw this poem the other day and smiled, because I feel like God gave me Lily for a special reason because I would not change a single thing about her.  She is my life.  She saved me from myself and has brought me more smiles, laughter, sleepless nights, and tears than she will know.  But they aren't the sad tears, more like the happy ones because I am the lucky one to be chosen for her and I count my blessings every day.

This poem is to remind all the mommies of kids with special needs how amazing they are!

The Special Mother

by Erma Bombeck 

Did you ever wonder how mothers of disabled children were chosen? 

Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation.   As He observes, He instructs His angels to make notes in a giant ledger. 

"This one gets a daughter.   The Patron saint will be Cecelia" 

"This one gets twins.   The Patron saint will be Matthew" 

"This one gets a son.   The Patron saint.....give her Gerard.   He's used to profanity" 

Finally He passes a name to an angel and smiles.  "Give her a disabled child". 

The angel is curious.  "Why this one God? She's so happy" 

"Exactly," smiles God.  "Could I give a disabled child to a mother who does not know laughter?  That would be cruel!" 

"But has she patience?" asks the angel. 

"I don't want her to have too much patience or she will drown in a sea of sorrow and despair.   Once the shock and resentment wears off, she'll handle it.   I watched her today, she has that feeling of self and independence that is so necessary in a mother.   You see, the child I'm going to give her has his own world.   She has to make him live in her world and that's not going to be easy." 

"But Lord, I don't think she even believes in you" 

God smiles, "No matter, I can fix that.   This one is perfect - she has just enough selfishness" 

The angel gasps - "Selfishness? is that a virtue?" 

God nods.  "If she can't separate herself from the child occasionally she won't survive.   Yes here is a woman whom I will bless with a child less than perfect.   She doesn't realize it yet, but she is to be envied.   She will never take for granted a 'spoken word'.   She will never consider any 'step' ordinary.   When her child says "Momma" for the first time she will be present at a miracle and will know it.   I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them.   She will never be alone.  I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side" 

"And what about her Patron saint?" asks the angel, his pen poised in mid air.   

God smiles "A mirror will suffice" 

Endocrinology Visit

Yesterday was Lily's endocrinology appointment up at Tufts with Dr. Bansal.  She goes every 3 months to check in with her doctor.  He likes to be able to check her height and growth and draw blood labs to check her insulin, glucose, A1c (monitors how good blood sugars have been over the past 3 months as a whole).  He also checked her Celiac levels, Vitamin D, Calcium, Phosphorus, growth hormone and had her get an X-Ray so we would have a better understanding of her bone density (all those labs are for some of the nursing girls who would like to know about the treatment!). He also checked her thyroid levels.  Although she is the total opposite of someone whom you would assume to have hypothyroidism, she does have a past history of it and her numbers are usually borderline for meds.  Someone with hypothyroidism has a slower metabolic  rate (think Oprah, she has it!) and are usually heavier, sweat alot, fatigue, constipation, irritability, etc. Hypothyroidism is when your thyroid just isn't making enough of the hormones it needs for a normal body function (in a nutshell).  It is one of the clear signs of Turner Syndrome and a lot of girls have trouble with their thyroid. They check a hormone in the blood called the TSH (thyroid stimulating hormone) and the  norm is between .5-5.5.  Lily usually runs around 7, but her doctor doesn't want her on meds unless she is around 10.  I love that about him.  I love that he isn't quick to just throw meds at us and ship us out the door.  He really doesn't put her on anything unless she absolutely needs it.


We had the growth hormone chat yesterday as well.  As some of you know, Lily was on growth hormone last year for about 6 months.  She did fabulous on it and grew about an inch and gained 2 pounds.  May not sound like much, but when you are 4 years old, 37 inches, and 27 lbs, it is a ton!  The hormones were doing great.... then we lost health insurance for a 3 month period.  Health insurance will be the death of me.  So many red tapes to get through, approvals needed, referrals for this and that, and so many No's! So when we switched from Children's to Tufts (I am probably the only Children's Mom in the world that doesn't like the care they give at all!) last September, her doctor wanted to get a feel for her growth on her own.  He wanted to monitor her for a few months and then reevaluate what she needed.  When he took her labs when we were last there, her growth hormone levels came back normal, but he is going to start her again on the hormone.  I am really excited for her to start them again.  Lily is such a tiny girl.  When I go into her Pre-K classroom, her "smallness" (if you will) sticks out ten-fold.  She is at least an entire head shorter than everyone in her class. I am really excited to start her on the hormone again and see how she does on it for an extended period of time.  The growth hormone is given as an injection once a day in either her thigh or arm.  It is given subcutaneously, so it doesn't have to go into a blood vessel or a muscle.  Lily hates the shots, but was finally adjusting when we lost the prescription for it.  A lot of people ask me about the side effects of the growth hormone, and they are serious, however, the benefits definitely outweigh the risks for our family.  I think every family has to sit down and make their own decision about it, but to be honest, it was a pretty easy decision for us.  The risks include a slip of the growth plate in the hip which would require treatment, and the severe and sometimes fatal risk of increased intra-cranial pressure that has to be managed IMMEDIATELY.  I have gone into her school and explained to her teachers and school nurse that if Lily ever had any migraine or severe headache symptoms that an ambulance needs to be called immediately and she needs to be taken to BOSTON and not some hospital around here.  Like I said, these side effects are SO rare, but with Lily, we have had some of the rarest occurrences happen, so everyone in her life needs to be aware of warning signs.  The growth hormone therapy costs upwards of $10,000-$15,000 per year.  It is not a drug that many insurance companies want to pay for.  Since Turner's is one of the FDA approved treatments for growth hormone, I am hoping she gets right on it (though last time it took 10 months to get her on it). I am really excited to start the injections again and I hope we can get them going within the next couple of months.


He also wanted an X-Ray of her hand in order to get a picture of her bone density as that is a problem with Turner's girls as well.  I will be interested in seeing those results.  

Love at 1st Sight!

So after our 5 hour long adventure for a 45 minute appointment, we made it home!  I will keep everyone posted on her labs!  Cross your fingers for our growth hormone treatment as well!  Thanks everyone!

Dining out Dilemma

Today was fun! Since there was no work/school for Lily and I we decided to meet my mom for some lunch and shopping.  After looking up every restaurant that carries a gluten free menu, Chilis was what was local so we decided to go there.  You would assume, since they offer a gluten free menu, they would have a clue.  Well, you know what they say about assuming -- it makes and ASS out of U and ME! When we got there, I informed the hostess that I would need a gluten free menu.  I had viewed it online, but I just wanted to make sure that Lily was getting what she wanted.  The hostess told me she would have to "go look for it." So after 10 minutes of sitting at the table and ordering drinks, I asked the waitress again for a gluten free menu.  A few minutes later the hostess came back and told me that the manager was printing it out now.  Printing it out? Are you for real? You really don't have a copy of it? Not too reassuring.  I placed Lily's order of a cheeseburger (minus the bun) and some corn on the cob.  French fries are gluten free, and she would have loved those, but they are only gluten free if they have a designated frialator, if not then it is as good as eating a slice of bread.  So a couple minutes after we placed the order, the waitress came back and asked for the piece of paper they were passing off as the gluten free menu.  My mom and I looked at each other with that "What the hell?" expression and gave her the menu.  No sooner do we give her the menu does the manager come out.  He said "It is just our policy to come out when there is a food allergy.  Who has the allergy?"  I told him it was Lily.  He then informed me "Ok, so the burger is going to come on a whole wheat bun, is that ok?"  OH MY GOD -- Why have a gluten free menu if you don't have a clue?  I mean it CLEARLY says on the menu that the server just brought back to you that it comes without a bun.  So I proceed to explain to him she wants the burger, no bun, and it cannot touch any food that has wheat, rye, or barley in it.  Just bring the kid a damn burger already!  I mean I wasn't upset about it after all, because I would much rather he come out and ask me than try to serve the kid a burger on a whole wheat bun.  I can't say I was thrilled with our first gluten free dining out experience.    


The burger eventually came.  It was quite humorous that it came out on an appetizer plate with just the burger on it.  It didn't look like a good meal to anyone!  Lily had actually never agreed to eat a burger before today.  She always told me she doesn't like them and I could never get her to take a bite of one.  Well she ate the whole damn burger today.  I was pretty impressed.  So we obviously had to go get a prize today for eating so well lately.  I am all about bribing and positive reinforcement! If she keeps this good eating up, I am going to need another whole apartment for all of these toys! 


Thanks again for all of the positive feedback on this blog.  All of you are giving me such great comments and amazing uplifting messages/emails.  I hope you all continue to follow her story!

Gluten Free is the Way to Be!

Yes you read the title right!  Lily has been saying it for a couple of days now!  She is adjusting to her new diet quite well.  She is getting really good at asking "Is that gluten free?" before she takes any food.  She did it all night at her Grammie's the other night and has been even asking me!  She has been enjoying the food that she has been eating and I don't want to jinx it but she's been eating better than ever!  It makes me wonder if she has had this dull ache in her stomach her entire life from eating gluten.  In reality, who would want to eat anything if they constantly had a belly ache and every time they ate food it only made it worse? I sure as hell wouldn't.  So now that she is eating gluten free I am sure her the inflammation in her intestines is slowly but surely going down and she is feeling better.  I have noticed she has also been whining a lot less in the past few days.  It makes me wonder if it is all linked together.  Feeling better, acting better, eating better; yes it all makes a Momma a happy girl! 


There are tons of gluten free products I have found.  I am a big fan of the "Dr. Praeger's broccoli littles."  They are little chicken nugget shaped potato and broccoli bites and Lily had NO idea there was any veggies in them!  She ate them all up.  She's been eating more vegetables than ever, and really sitting down and enjoying meal times.  It's only been a week and she is doing remarkable.  James is enjoying his gluten free diet as well.  Seeing that I am going to school to be a nurse and not a short-order cook, he is eating gluten free as well so I don't have to make 3 meals a night.  He would eat cardboard if you served it to him, so needless to say he is enjoying the gluten free food too.  He will be joining Lily next month at the nutritionist so we can figure out his milk and soy allergy and try to start getting some sort of dairy substitute in his diet, but that is a story for another day.


So overall, all is well at the Bowen household.  I am so happy at how well she is doing and I find myself wanting to be more creative with her food.  Hopefully I can fatten this kid up in no time! We are going to the endocrinologist next Thursday where I am sure we will spend half of the day because I just don't shut up when we are there!  I can't wait to let him know about the research study at Stanford and all of the new things I am learning!  You may be surprised but I feel like half the time I know more about Turner's than the doctors do.  It is so rare that they don't see it very often and often have to be educated about it themselves.  So I will go in and share with him everything I am finding and get his professional opinions on it all! 


Have a great weekend everyone and GO PATS!

My little Rockstar

Gray Day

Today is a gray day.  One of those, don't want to get out of bed, snuggle up to Sesame Street, turn off the phone kind of days.  It is not a sit and bed and cry day, but more of a BLAH kind of day. However my kids aren't having a gray day.  Their essential morning tunes of "I'm hungry Mommy," "Can I have a drink," "What are we going to do today," made me move.  I think this blog has been such a therapy for me.  Putting it all out there and sharing Lily's story has taken some sort of burden off of me.  I feel like I have released all that has happened and I am now ready to open the next chapter.  I try to stay in the positive about everything that is going on, but after staying up until past midnight just reading and reading and trying to become more informed, I honestly just felt bummed out.  


I hate to think about what could go wrong, what should go wrong, where we will be in 20 years, but I still do.  The world is a big scary place and I have a little tiny girl.  I feel like this world of Turner Syndrome is a secret world.  Only.04% of Americans have Turner's.  It is like this unknown phenomenon that I can't get any constant answers from.  When I once asked an endocrinologist (who shall not be named -- to protect the guilty) if she would live a full life, he replied with "Well I have heard about TS girls living to 18."  Seriously guy? Seriously? 18 is when life starts, it is when we start to discover who we really are as people (and it takes many years after that).  He was wrong.  Anyone I have talked to with 1/2 a brain has been able to tell me she will live, thrive, love, laugh, hurt, and share herself with us for years and years after that.  I don't know why I google things when I know I shouldn't, but alas, I do it anyways.  I read about all of the heart conditions and how prevalent they are, how learning disabilities strike our TS girls, and how their short stature can cause ridicule amongst their peers.  I have googled it all before, read it all before, but for some reason, it all made today a gray day.


But, kids don't have gray days.  They look to Mommy for fun times! So off to kick my own butt and get over my "Woe is me," attitude.  Off to shop we go for new snow boots!  After that, we will have a "white day," covered in snow and the innocence of a child who will know no boundaries. 

Becoming Educated

Wow! You guys are great!  I have gotten so many recipes, good places to shop and some great gluten free product ideas!  I want to thank everyone for all of your help and the information you have been offering.  A friend of mine, Mary-Ann, dropped off some gluten free chocolate chip cookies and some other gluten free products yesterday.  She was kind enough to get a whole new cookie sheet and spatula to make sure she didn't contaminate Lily's food!  The cookies were the gluten free Betty Crocker brand and they were good!!!  The only difference I noticed was in the texture of the cookie.  Lily LOVED them!  I think she's eaten about 10 cookies already!


Her teacher sent a letter home yesterday that she is teaching the kids a new finger-play song about penguins and at the end of the song she gives all of the children a goldfish (must go along with the theme).  She asked for me to send in some sort of special gluten free snack Lily could have after the song and I thought it was really cool that everyone seems to be slowly adjusting to this new lifestyle.


I have been diving hard in to the Turner's world lately.  I have been joining groups, looking to talk to teenagers and older women with Turner, and basically just try to educate myself as much as I possibly can.  In reality, the only advocate a child has are their parents, so in order to get her the best possible care with the best possible outcome, I have to educate myself as much as I can.  There is a great foundation (www.turnersyndrome.org) that is the Turner Syndrome Society of the United States.  They hold a national conference every year, and I think I am going to go.  I have enlisted my Mom and my mother in law to go with me.  This year it is in Buffalo, NY and it is a 2 day conference.  I hope to go and meet some women with TS that can tell me more about their story and some things they wish that they knew to do when they were younger.

I also found a section of the website called "research."  I found this really cool study in Stanford University.  They are looking to do a neurological study on girls aged 3-12.  They want to learn more about learning, behavior, genetics and brain development of girls with TS. I emailed them to find out some more about the study and it would involve flying out to California (all travel and lodging expenses paid) where they would spend 2 days with Lily.  On day 1 there would be an IQ test, behavioral studies and about her learning habits.  Day 2 would be Lily having an MRI where they would play different types of games with her and watch how her brain reacts.  I think it would be so cool!  It is the first study of its kind done and we would continue to get updates on the study and different things they are finding out.  We would return a year later for a repeat study.  I have to send them Lily's genetic testing that diagnosed her with TS and we should hopefully know if she is accepted for the study in the next couple of weeks. If you would like to see about the study, here is the link: http://cibsr.stanford.edu/participating/participating_turner.htm

That's all she wrote... for now!  Hope everyone is enjoying the snow storm and hopefully a day off from work!

Looking Back

As we come up on the 4 year anniversary of "the day that changed everything," I thought now would be a good time to look back.


When Lily's pediatrician told me she should go to see a neurologist to see if she needed to be fitted for a shaping helmet for her flat head, I think I cried. Pathetic now, looking back, but I was so scared for Lily, a baby helmet? Now I can look at that and laugh!  She never ended up needing that helmet, her head was fine after all, but it is actually comical to think that I was so shaken by such a small thing.  I guess I was again too naive to know anything.  I thought this neurology appointment was such a big deal, I made Jimmy, my Mom, and my mother-in-law all take the day off to come in to Boston with me for it.  Now looking back, it was the smartest decision I ever made, having them all there, with Lily and I.  Some greater power must have told me that I would need strength that day, and people to literally hold me up. 


I vaguely remember the seizure now.  All I really remember is the feeling of being panicked.  That literally everything else around me stopped and all I could see was Lily.  I don't remember the doctor who came running out of his office.  I do remember putting Lily down in the carriage, per the doctor's orders, as we took her to the ER.  I remember getting into the elevator and going legless, almost fall down legless, and I remember Kellie (my mother in law) grabbing me by the arm and telling me to "Pull it together right now."  It was exactly what I needed to hear.  I could feel my heart pounding out of my chest.  Why the hell was my 6 month old having a seizure?  I knew she didn't have a fever so it wasn't from that.  Was she epileptic?  Did she have some other seizure disorder? Or could if even be something worse?  I remember just spitting out her birth information over and over.  "3 lbs 5 oz, 16 in, NICU for 12 days; Couldn't maintain body temperature, jaundice, 6 weeks early."  Over and over again I said it to anyone that would listen.  They had to help my baby.


As I saw the doctors flood the room, one after another, IVs being inserted, blood sugars taken, blood being drawn; I thought to myself, "Why Lily?", "Why me?"  It would take some time, but soon I would know why it was us.  Why it was our team being chosen for this.


"Hyperinsulinism is when you can't maintain blood sugars.  We have 2 different medicines that we will give to her, and see which one works better.  You all should be home in 2 or 3 days." How wrong they were.  They started the first med right away.  It was called Diazoxide, and it would work to block the release of insulin.  By doing that, her block sugars should go down.  It was going to be a home run and we would be home in a couple of days.  Well, actually no, it was a major fail.  It didn't work at all.  "No problem," I was told, on to the Octreotide.  Octreotide is an injection that she would receive up to 4 times a day.  It works by decreasing the amount of insulin being secreted. Well quickly, we were up to 4 shots a day and at the hospital for well over a week at this point.  The Octreotide wasn't working.  Nothing was working.  Her blood sugars were still going dangerously low every time the doctors tried to turn off her IV sugar. Then, we heard about CHOP.


Children's Hospital of Philadelphia (CHOP) had the leading hyperinsulinism treatment in the country.  They could help Lily, and perform all the tests needed to determine if she needed surgery to cure her problem.  So the waiting game began.  We had been at the hospital for 2 weeks by the time CHOP was introduced.  Obviously, like any mother, I never left her side.  I wouldn't go to get food unless she was sleeping.  I didn't want anyone else to be sitting with my baby.  I didn't want anyone else to see her get her shots, or try to feed her, or anything else.  I was her Mommy and I wasn't going to miss anything.  A week went by after we heard about CHOP.  Lily was on MassHealth at the time and they didn't want to pay for her to go to CHOP because they didn't pay for out of state treatment.  4 weeks went by... Jimmy was still going to work daily, we needed money to still survive.  He was able to start the process to get her on his Harvard Pilgrim Insurance; but it was taking more time.  By 5 weeks of sitting in the hospital, her doctors had a proposal for me.  "MGH has a PET Scan machine.  We can take her over to MGH, and do the specialized scan.  We have a great pedi Endocrinology surgeon.  Though he was never done the surgery before, he is very capable."  And my response "No way!" and I cried for the first time during this entire ordeal.  I cried for Lily, I cried for me, I cried for this life of hers that was going to be nothing what I imagined it to be.  This surgery they wanted to perform on Lily for the first time, was removing 95% of her pancreas.  For those of you who are unfamiliar with what the pancreas does, well it does everything.  It helps with digestion, hormones, enzymes, tons of major body functions.  I am sorry but they could go find someone else's kid to be the guinea pig because it sure as hell wasn't going to be my kid.


Her doctors were amazingly understanding of my position.  They knew I had been so patient with this entire process and that we just wanted the best possible care for Lily. They went back, met with the Chief of Endocrinology (who was also coming to see us daily) and came back to tell me that they were doing everything in their power to get us to CHOP.  Dr. Dedeikian told me that he would pay for a cab himself to get us there and come with us to maintain her IV if he had to!  But a week later, we got the word, we were going to CHOP and the ambulance that would take us there would be there the next day.  FINALLY! 6 weeks in to our ordeal we were hopefully going to get answers.  6 weeks of Jimmy sleeping on a cot, and me cuddled up in the crib with Lily and we were finally going to get some answers.  Thank God!


So Jimmy hopped in to the ambulance with Lily, who was still getting Octreotide shots, in some hopes that they would miraculously start working.  He bravely gave her the shots she needed on the 8 hour drive down as the paramedics didn't have that med on their approved list.  I drove behind them (I needed a break! and I get terribly car sick!) and soon we were arriving.  Jimmy was staying at the Ronald McDonald house in a not so hot part of town, because only one parent was allowed to stay at the hospital.  I learned strength through him over the next few weeks.  We met Dr. Stanely (the hyperinsulinism guru) and his team and were reassured that we wouldn't go home without answers.  In order to understand her treatment, you have to know about hyperinsulinism or better known in the medical community as "HI."  HI can come in 2 forms, there is focal HI or diffuse HI.  In Focal HI, only a small, focal area of the pancreas is affected. The remainder of the beta cells in the pancreas are normal.  So basically, one part of the pancreas is making this whole blood sugar mess.  In diffuse HI, the entire pancreas is affected.  So CHOP did this special scan where they injected a dye, put Lily under  anesthesia and examine her pancreas.  If she had focal HI it would show just one part of the pancreas lit up on the screen.  Diffuse HI came back looking the same as a regular pancreas as it wasn't detected on the scan.  So what do you know, a normal PET Scan came back.  The next step was to do genetic testing as Dr. Stanely has figured out what genes are linked to the 2 different types of HI.  Well her HI genetic testing came back normal as well.  So what was affecting Lily's blood sugars so badly?


The next step was to send off a 21 genome chip to test for CDG.  CDG is an awful disease with an extremely high mortality rate.  So for a week, Jimmy and I sat there, wondering, waiting, praying, that she did not have CDG.  And thank God she didn't, but she did have Turner's Syndrome.  When I heard it was Turner's Syndrome, I was kind of relieved.  When you spend a week of your life researching CDG, which is basically a death sentence, and you hear it's Turner's Syndrome, anyone would understand my relief.  And better yet, there had been one case study done in the world that linked Turner's Syndrome to HI.  So now the question came; Did we want to operate or continue to medically manage her with a feeding tube and medicine?


NO BRAINER!  The surgery for HI to remove most of the pancreas leaves almost all the kids with diabetes.  Diabetes is such a serious disease, and some kids did grow out of hyperinsulinism.  We chose the feeding tube and medicine and it worked!  She could maintain her blood sugars if we made sure she ate at least every 4 hours during the day.  At night she was hooked up to a feeding pump and continuously fed formula through her feeding tube.  It was scary at first but became second nature to us and our families after a while.


During this time, I realized how important family was.  As bad as I wanted Lily to go to CHOP, I knew I was going to be so far away from our families who had been there every day. They were constantly coming to see us, bringing us food, clothes, anything we needed and now we were going to be 8 hours away.  I didn't know if I could do it without my Mom there every day, but we managed.  My mom and Nana made the road trip down to see us, and Jimmy's mom and brother came right after, then as soon as they left my Dad and Sue came, and even my cousin.  We were truly blessed to have so many people who loved Lily and loved us too.  They held me up at my darkest hour and told me that everything would be okay.  Things like this really put life into perspective.  I was taught to enjoy every moment with Lily, because for a time, we didn't know if she would be ours forever.  I look back at this time and realized that is when I got strong.  I had to be strong; strong for Lily, and strong for our families.  They were 8 hours away and loved Lily just as much as we did.  They needed to hear that WE all were doing well, because they wanted to be there for every single second, but they couldn't. When our Moms came down, we actually got to go out to dinner for a night and relax.  The only people in the world I would have trusted her with at the time were our parents.  My Dad and Sue came down and surprised us.  They came in just as my Mom had left, and I was missing her.  They came at the perfect time.

Moral of the story:  Life is short, life is fragile, and life goes by too fast.  As I sit here now its been 4 years since our ordeal.  Lily is off all meds and has her g-tube (feeding tube) out.  She is thriving and loving life.  I know that we were chosen for this as a team.  He chose Lily because it really does take a strong personality to go through this.  Her personality makes her 10 feet tall, and her smile is contagious.  She is my hero. It truly does take a village to raise a child, especially one with special circumstances, and I thank God every day for all of our amazing family members.  Whether it is helping getting Lily off the bus, coming to yet another appointment, spending insane amounts of money on gluten free food so Lily has something to eat at their house, or just watching the kids so Jimmy and I can have a night off, they are all AMAZING.  Some days are harder than others.  She came home from school the other day and said "So and so wouldn't let me in to the kitchen center at school today because she said I looked like a baby," and I asked her, "Well what did you do Lily," and she told me that she told the girl "I have a baby brother, I'm not a baby, I am a BIG sister."  With that personality and that spunk, anything she dreams WILL be possible.