Approaching day 365

In a few weeks Noah will reach his FIRST birthday.  Crazy that time has flown by so fast and yet stood still in so many other ways.  I was forewarned that the first few birthdays are hard on "special needs" parents but like all things you have to experience it yourself before you can really understand what everyone tells you. 

The first birthday marks 365 days that our sweet Noah has been a apart of our family.  It marks the billion upon billion of kisses we have given his adorable face. It fills our scrapbooks with pictures and memories marking every single holiday and event for the year.  It marks the first celebration we get to throw for our first born son and share with all of our family and friends just how remarkable Noah has grown to be.  This is what first birthdays are all about.  This is what Jeremy and I remind ourselves all the time.  This is what I have personally been forcing myself to focus on more than what I was told I would feel.....but sometimes the grey moments still creep in and I can't help but feel the moments of melancholy that make my eyes glisten and I find myself catching short breathes and bits of sorrow. 

Even Mother Theresa herself had moments of jealousy and sorrow.  I am only human and I have been given the gift of feeling every kind of emotion there is to have...and I do...all the time...good and bad. For the most part I have been able to really hold tight to all things positive and uplifting.  I have found the ability to see the good in all things bad or uncomfortable.  I have learned a great deal of patience and I think I have grown really strong on the inside.  I have this new idea of what truly makes someone a superhero as I have now met many throughout this year.  One smile or giggle from Noah can completely erase an entire weeks worth of struggle and despair and to me that makes him my own personal superhero.  I have learned how to still have a typical day after a night of zero sleep and how to leave the emergency room and still get my grocery shopping done the same day.  I have learned how to accept help and even ask for help which is one of the hardest things I have ever learned to do.  I found out that I have what people refer to as Pride and have had to push that pride aside to accept financial help for our son. I have found out that me being an open book as gotten Noah more services and aid than shutting our lives inside a safe little bubble.  However, I have also found out that I can feel the darkest deepest saddest feelings and emotions as well. These I hate!  I can't control what my mind wonders to as I lay there and try to fall asleep some nights.  Worry, anxiety, stress, confusion, anger, gut wrenching despair just to name a few.

As his first birthday approaches I have been struggling with a few things.  First being the fact that I have not found my inner Martha Stewart and gone crazy over making handmade invitations and ordering decorations like I have always done in the past with any other celebration.  I want to and I come up with some good ideas but when it comes down to actually doing it I just fall short.  This was bothering me so bad because I knew something was wrong for me to be acting like this.  I knew it was more than just being tired.  Then one really bad day at work happened and I sat there at my desk being blinded by thousands of lines of data on a spreadsheet when it hit me.  I am sad.  The reason I couldn't seem to pull myself together for Noah's birthday was because I was dreading it.  I didn't want to be reminded that a full year has passed and he is still unable to do so many things we thought he could do by now.  I didn't want to cry over a birthday cake I knew he couldn't eat nor would he be able to smash and get messy in like any other 1 year old.  I didn't want to think about shopping or even looking at toys that at his age are all pretty much developmental in some way and beyond his capabilities.  They would just sit in a box not being played with because frankly Noah can't play yet with toys.  Then in that utterly dark moment I continued to fall deeper and deeper into the dark hole of gloom. 

It is so easy to fall in these moments and takes literally seconds before you fall so far down that you end up with a bump or break or bruised ego in my case.  Then, you just sit there in the bottom of this stupid hole getting mad at yourself for falling in the first place and letting yourself get to that point of sadness. It is hard to look up.  It is hard to try to come up with the strength or courage or even desire sometimes to want to get out of this hole.  Sometimes I find that I have to just sit there for awhile and think or speak or share all my negative thoughts swimming in my head to just plain get them out of my head so that I don't feel so weighed down and can finally start to stand up again.

This is exactly what happened to me this past month leading up to Noah's birthday.  I fell.  I got sad.  I got mad.  I then shared.  I talked.  I got the thoughts out of my head.  Then I looked up and saw the light of day again.  It is amazing how I find myself feeling after I have shared my worries.  It is like saying things out loud somehow is like proofreading my own feelings and emotions.  It shows me all the areas that need to be scratched out or rephrased or put more emphasis on and in the end I have a really good grasp on what I am truly feeling and not just getting carried away with. 

It is not day 365...it is Noah's birthday!  It is not the day to access all that has not happened but rather how much he has overcome and accomplished.  With a whip cream pie, those who love and adore him, and two completely enamored parents we are taking Noah's birthday and celebrating his adorable toothy smile, his chunky thighs, his award winning laugh attacks, and all the wonderful memories our internal cameras have captured and stored in our memories forever. November 11th will start scrapbook #2 and I am so excited to see what kinds of memories get stuck to its pages.

Disneyland 2012

Early 6:00am start to the day...all MICKEYed out in his new outfit

At first I was hesitant to bring Noah to Disneyland.  First of all...we would be driving there the day he turned only 11 months old.  Is 11 months too young for Disneyland? Second, I worried about the heat since Noah cannot sweat.  Would it be just too hot for him to enjoy?  Third, the noise.  He is so sensitive to loud sounds so would this entire trip be kept calming him down from all the loud bangs and screaming kids?  I had a few more reservations but I decided to throw them all to the wind and just try and enjoy myself the best I could.  I packed Noah's portable fan, like four sets or ear plugs, a front carrier pack (with an extra back brace for myself), and off we went.

He loved all the sights and sounds

DISNEYLAND IS PERFECT FOR ALL AGES AND ALL SPECIAL NEEDS!!!!!

The weather was perfect and hovered in the low 70s the entire time which meant we could keep all the cool packs and fans and coolers back in the hotel.  The noise level stays constant for the most part so that was never really an issue (except for one ride I will mention later). Also, 11 months old is like the new three years old because you can take any infant on any ride that you would take a three year old on.  Well, most of them anyway.  Your child has to be able to sit front facing on your lap and then you are good to go.  We took Noah on so many fun rides.  Here is a quick list of them.

Being silly and laughing away

Dumbo
Small World
Peter Pan
Carousel
Snow White
Mr. Toad
Little Mermaid
Pirates of the Caribbean
Haunted Mansion
Monsters Inc
Bugs life Caterpillar ride
Jungle Cruise (this was the loud ride from the motor and the speaker he cried on)
Alice in Wonderland
Mark Twain Boat Ride

First Family Disney Trip

Disneyland was wonderful.  All the colors and music and characters and staff that were so happy and helpful.  It doesn't matter that you are carrying around a baby or that you made reservations for a fancy dinner and are carting around a completely packed stroller...they make room for you and welcome you.  The bathrooms are all equipped with changing stations if you cannot make it to the provided Baby Care Center.  If you are stuck playing with the baby while your significant other is on a ride.  They get to grab a Parent Pass on their way out and you get to hop on that same ride while skipping the line.

Mark Twain boat ride made him smile

Noah loved the Dumbo ride and Small World the best.  He would stick his tongue out on the Dumbo ride to feel the cool air and would smile.  He giggled in Small World and even enjoyed himself on the two drop off points on Pirates of the Caribbean.  All the hustle and bustle of everyone around us only added to the stimulation and "vision therapy" for Noah.  He was looking around and smiling and giggling and just enjoying himself as much as we were enjoying ourselves.
We would go back in a heart beat.  No hesitations.  No questions asked.  Disneyland truly is a magical place for everyone. 

Day #2 bright and early once again

Getting ready to go on Dumbo for the second time

Dumbo was his favorite ride

Small World was his second favorite.

Genetics Test Results

We received a call from the genetics department at Primary Childrens Medical Center informing us that the micro array snip test that was done on Noah has come back showing NO deletions or malformations on his chromosomes :)

We kind of already knew that this might be the case and actually this makes us really really happy.

Some have asked "What does this mean....What now?"

This means that Noah's chromosomes are not showing any form of identifying cause to his condition but it also means that he does not have any of the long list of conditions that would have shown up on his chromosomes.  This is great news because many of those conditions are very disheartening and could have caused many other complications to his future.

Now, this test is only one of many tests that can be done on Noah's blood/DNA.  Other tests are available that would map specific genes.  However, these tests are very very expensive and at this time we feel that it is best to wait until they are covered by insurance.  Our genetics doctor told us that in five years there will be many more tests available to us and at this time there is no rush to doing these tests.  We feel really comfortable with this thought process.  We knew going into this testing that we would have less than a 5% chance of even finding anything.

For now we are reassured with the fact that Noah does not have any of the other chromosomal deletions and also with the fact that our chances of having another child with SOD is extremely unlikely.  Not to say it can't happen because nobody has ever found a cause for SOD, but it is very unlikely and we like those odds. 

Cortisol Testing

This past Tuesday I took the trip to Primary Children's with Noah to have his first cortisol test done.  His endocrinologist wants to see if Noah's pituitary gland in his brain is producing the hormones needed for him to grow properly.  It was supposed to be a quick and easy test but it ended up being a very exhausting ordeal.

We arrived at 7:45 for our 8am appointment in the Rapid Treatment Unit at PCMC.  We registered and were surprised to be escorted to a hospital room within seconds.  The room came equipt with a very clean bathroom, a tv that I didn't get to use, a sink, all kinds of monitors, and a hospital grade crib that slightly resembled the kind of cold white metal crib you see in horror movies.  Except these cribs have drop down sides and the ability to tilt upwards.  Noah was placed in the crib as a very friendly nurse named Debby began to take his temp, blood pressure, and all the other base line states she needed.  This was the easy part and tricked me into thinking that the whole day was going to go quick and be a breeze.  Boy could I have not been any wronger.  It was a comedy of errors type of day where everything that could go wrong DID go wrong.

First the doctor was running late so they could not start until they got signed off by this doctor.  So much for scheduling the earliest appointment thinking we could get started early.  She finally arrived but then decided she should call the endocrinologist to "make sure" they were getting all the tests he really wanted.  Which was a responsible thing to do but also allowed the endo doc to add on a few more tests with extra time consuming instructions. The order was signed off on and it was then that Debby was able to stick my baby with a sharp needle to get his IV in his arm.  One quick poke and it would all be good to go and I could turn on the tv for an hour and we would be on our way (well so I thought).  Debby couldn't get the IV in.  Noah was screaming at this point because she had to poke his left arm then his right arm and just couldn't find a good enough vein in his chubby little arms.  She decided to call in the blood sucking professionals and an entire hour later two phlebotomists came in for round two of he Noah torture session.  40 minutes later, with about six unsuccessful attempts, some blood on the sheets, and Noah's eyes swollen from tears and an IV was finally in.  It was around poke 4 where I started to notice my own tears coming down my face and was about to scream for them to stop as my sweet Bobaloo had almost passed out from the pain.  You have no idea how hard it was for me to thank the blood suckers as they left.  I was just so thankful that an IV was finally in and we could just get this stupid test over with.

Unbeknownst to me, Debby could not actually order the mediation needed for the test until after the IV was in and ready.  So it was at this time that she ordered the shot from the pharmacy and then it was another waiting game for them to finally make the stupid thing.....1.5 hours later!  She let me hold him during this waiting time and I was able to rock Noah and kiss him and holding him next to my heart.  I am trying to just focus on this part because this was the good part. I sang Elmo songs and hushed him as he was still trying to calm down from crying.  We needed this 1.5 hours as much as I wished we could have just walked out of there instead.  It gave us both time to relax and calm down and just be mommy and son. 

The medication was finally administered into his IV after two viles of blood had been extracted beforehand to mark a baseline of his blood levels.  The shot was filled with a generic low grade ACTH drug.  ACTH is the hormone needed to signal the pituitary gland to release cortisol.  Cortisol in turn is the hormone that tells the other adrenal glands (kidneys and such) to to their specific jobs.  If Noah's pituitary gland isn't working like it should then this test will basically tell us that Noah will need cortisol injections to help him grow healthy.

30 minutes after the ACTH was administered Debby came in to collect another vile of blood to mark as the "30 minute marker" to compare to the original blood drawn first.  Another blood pressure reading was needed and that meant another round of her trying to find a cuff to fit Noah and also me maneuvering him all over the place so that an actual reading could be recorded.  It is very hard for them to get pressure readings off of Noah for some reason.  It was also at this time where we were informed that Noah needed to have a urine sample taken to test for Diabetes Insipidus.  He has been tested for this in the past so I felt comfortable with this test.   They had to put a plastic bag around his manhood to collect the sample.  Thankfully they didn't need to do a catheter. This time however they had to use this sticky tape to secure the bag around his manhood to keep it in place.  Last time Noah peed the second his diaper came off so the nurse was able to just collect it without securing the bag to him.  So there he has with one arm braced straight with an IV inserted and tape keeping everything in place.  He had one foot bandaged from an IV attempt as well as another blue bandage securing the heart monitor to his big toe.  Then he had three different Leeds taped to his chest to monitor his saturation levels and other things.  Then on his other foot he had his name tag secured to his ankle and another IV attempt band-aid.  I felt so bad for him lying there and I couldn't hold him at this point.  Debby did bring in a musical crib toy and that seemed to really help Noah feel at peace for a bit of time.  It played one tune over and over and in the beginning I found it soothing but now it is branded in my brain as the soundtrack to Nurses who Torture Noah!

Another 30 minutes went by and the last and final blood draw was taken for the test.  We were done!  Thank you God!

Spoke too soon I guess...or maybe God didn't like me shouting out his name that way.  We were then told we had to wait 60 minutes as an "observation period" to make sure Noah didn't have any kind of reaction to the ACTH.  They could have preped me for this earlier.  It was now past noon, I was starving, Noah was starving since he had to fast for this test, I had to call work where my wonderful boss just told me to take the day off since I originally thought it was only going to take two hours like they told me it would.  Noah was exhausted and so was I.  He started to slip into dreamland and I took this opportunity to give him a bottle now that I had the go ahead.  It took me 40 minutes to get in 5 ounces due to monitors going off and beeping and waking him up.  My arms were throbbing from having to bend on the crib frame to feed him and to also secure his head from falling to one side or the other since I had to elevate the bed to give him his bottle.  As soon as he was fed I sat down on the Asparagus colored vinyl chair and must have dozed off for a few minutes because I was startled awake by Noahs monitor going off for the 100th time.  Nothing to worry about...just a Leed not reading correctly.

Debby finally returned to us at 1:25 to "release" us from the hospital.  She then proceeded to give Noah round three of the torture session but kept replaying the music to hopefully keep him calm.  She was being very careful and was trying her hardest to make it easy for him but ripping off tape, unplugging the IV, cleaning off the sticky tape glue, and slowly ripping off the urine sample bag in such a sensitive area was just more pain that Noah could bare.  Screamfest 2012 happened and I was sure he was going to puke out all of his bottle on me.  She couldn't let us officially go until she got one last blood pressure cuff reading and with me trying to calm Noah down at the same time just didn't work.  I was at least able to pick him up and rock him and bounce him and kiss him and sing to him and it was then when he finally started to calm down...just enough for the pressure cuff to then squeeze his calf and get him going again with more tears.  Poor little guy had enough and I didn't blame him one bit.

We walked out the hospital doors at 2:00pm.  SIX hours later!  Noah fell asleep on the way home and then woke up when I had to stop at a McDonalds to get myself some quick calories.  Thankfully my mom surprised us with a visit to our house where I was able to eat my thigh hugging fries as she got Noah to coo and babble and smile.  I am so thankful to have such a wonderful Mom who is always there when I need her and always knows when I need her too. She even came with yummy heart lifting chocolate in hand.  She left to go back home and Noah and I went to cuddle on my bed where we both fell into a very deep sleep until Jeremy got home and then he spoiled us for the rest of the night :) 

So thankful this day is in the past.  I am finally over it and was just now able to relive it all one last time to write this post.  As soon as my fingers stop typing I am going to delete this memory from my mind and make room for a very happy one that I am sure we are going to experience this weekend :)

........test results are in but the doctor hasn't been able to write his report so I will have to wait for him to call me next week I am sure. 

JUST IN:  ALL RESULTS CAME BACK WITHIN NORMAL RANGE!  No worries at this time for any form of adrenal problems.  Endo doc wants to test his thyroid with a quick lab blood draw the end of October.  GREAT NEWS!

Shriner's, Genetics Test, Fundraiser and other Updates

Happy Post!  Glowing Face with big Fat Smile!  Yes...an All Good Post!  (just a few other names I really wanted to title this post)

This is going to be a doooozy of a post since it has been so long and I have much to update on.  I will try to make it short though so as to not bore you with too many words with extra vowels. 

Genetics

Yesterday was officially the three week mark since our genetics appointment and also the day I was told to contact our insurance to see if our appeal went through.  It Did!!!!  This means that Noah is going in for a quick blood draw today and we can save about $5,000 it was going to cost us for this test if our insurance did not approve our appeal for the test.  As happy as we are to get this done we are also very aware that we have a less than 5% chance of it showing us anything (also the reason we didn't want to fork out $5k we dont have for this test).  It is called a SNIP test or also know as the SNIP Microarray test. This test will take Noah's DNA and separate all the chromosomes and find out if any of the 23 chromosomes have any form of deletion or malformation.  According to our genetics doctor it is extremely rare for kids with SOD (Septo Optic Dysplasia) to find a cause through this test but he has been humbled too many times to say they never do.  In the off chance that something is found then it will give us more insight into what to watch out for in regards to Noah's other organs or our future offspring. 

Shriner's

Yesterday was also the day we had our first Shriner's Hospital assessment.  I honestly did not know what to expect and was a bit nervous to tell you the truth.  I so badly want to see improvement in Noah's development so I always get nervous when it comes to visiting places that provide hope.  The place is actually quite beautiful.  You walk into the main lobby and they have this painting on the wall made from bold and bright colors that is really quit eye catching.  You could easily pass time in the waiting room just by staring at this mural.

We had to pick a number and then wait to check in.  They took my insurance card and this is the part that makes me nervous.  I have been told that my insurance will cover 20 Physical Therapy visits a year and since Shriner's now bills insurance this will use up all 20 visits.  However, the cool part about Shriners is that we will never have to pay a co-pay and even if/when we use the 20 visits they will cover all additional costs that my insurance will not.  This is fantastic.  However, this also means that they have to use all 20 visits up front and therefore diminishes Noah's chances of going to this center called Now I Can until probably the middle of next year.   It is only September and so I would like to take Noah to Shriners as many times as possible to use all of the 20 visits we have for 2012.

We met with an orthopedic physician who was really fun and young and talented.  She spoke with us for some time and then said "so what brings you to Shriner's...how can we help you???"  I do not know why but I was stumped by this question.  I responded with "Well, with the help we are receiving with Early Intervention we are still not seeing the results and Noah just isn't developing like he should."  I think that was a pretty good answer cause then she had a full plan for us.  She is "plugging us into their system" as she stated.  They have a Physical Therapist, Occupational Therapist, Speech Therapist, and Dietician on hand that can help us.

Two minutes later the dietician was sitting down with us to go over Noah's nutritional needs.   Looking at Noah you see a chunky little monkey.  However, when you take his length (28 3/4") and his weight (19.3 lbs) and then calculate his overall percentage he is only at 18%.  According to this woman (who had the exact same voice and demeanor as the young female counselor off of the tv show Glee....brochure anyone?) a "typical child should have an overall percentage of 25%-70%".  So basically, under all those rolls Noah is still "underweight".  Crazy!  So he has a very strict eating plan for the next two months and needs to consume 850 calories a day.  In two months we will re-access and go from there. I never thought I was going to have to count calories for my baby and literally watch every single morsel going in or drooling out of his mouth. We have to bump up his calories with good fats.  Ideas anyone????  We are already doing avocado's and olive oils but need some other ideas.

Today I am supposed to call and speak with the woman in charge of scheduling physical therapy visits.  I have no idea how many we can schedule or even what the protocol is yet for Shriner's.  I am trying not to get my hopes up since I do realize Noah is only 10 months old and there is only so many things a young baby can do.  I will keep you posted and let you know how our experience is with Shriners once we are officially in the system :)

Early Intervention 6 month Goal Planning Session

As if yesterday wasn't big enough of a day we also had to throw in our Early Intervention goal planning or IFSP.  Every six months they reevaluate Noah to see what areas we need to work on more and also to see if he has met any of the prior goals.  It is a bit disheartening when they go down the list of goals and you have to keep saying "nope...he still can't do that."  Our first goal session was when Noah was 3 months old and at that time goals were set where they thought he could be standing on his own right now, saying a couple words, rolling all over the place, picking up cheerios and chewing on them.  This was all before he was attacked by Infantile Spasms and therefore is still unable to reach any of those goals.  Our new goals are much more realistic this time.  In six months we hope to see Noah putting weight on his limbs, holding his head up for ten minutes straight, gaining weight, holding a toy for more than three minutes straight, reaching out to grab something, sitting on his own.  I pray that these goals will happen but once again...try not to get my hopes up.  They will come eventually and I really need to work on my patience.

Noah's Fundraiser and Now I Can

Our good friend has started a fundraiser for Noah through a website called fundly (link on the top right corner of this blog).  It took my husband and I many weeks of discussion before we fully felt comfortable with the idea.  Nobody ever wants to feel like a charity case and it is still hard for us to accept the fact that we need financial help.  We are part of what most people would consider "middle class".  We both work full time jobs, have a mortgage, and both have a vehicle to get us to work and run Noah to all of his appointments.  We are hard workers, both have degrees, and consider ourselves to be very positive people.  However, it just isn't enough when it comes to having a special needs child.  Bill after bill and co-pay after co-pay has really taken a toll on us.  There are so many things we would love to provide Noah with....like the ability to walk and talk and eat. In order to achieve that we have to pay thousands upon thousands of dollars to get him into the centers that help him develop in all these areas.  Since we have been denied for medicaid and SSI we are on our own.  We are managing but with each month it gets harder and harder.  This fundraiser is going to be a massive help to Noah's development and about ten times a day I want to just cry because of all the love and support people are showing our sweet little boy.  It is times like this where I wish I could really show our gratitude in more ways than just words.  A simple thank you card just doesn't feel like enough and I have been racking my brain trying to figure out just what to do to thank everyone.

We have decided that Noah would really benefit from a place called Now I Can.  It is a intensive physical therapy clinic that is mucho expensive but really rewarding and we plan on using most of what Noah receives from his fundraiser to get him into this clinic.  Noah is a bit too young right now but next year we are hoping to get him in.  I have done so much research on different facilities here in Utah and this one seems to have the best results.  I can't wait to see what kinds of milestones Noah will be able to achieve once we get some really good hands on therapy for him. 

Noah's Fun Developmental Stuff

This is the fun stuff.  Pictures and cute videos of our sweet Bobaloo.  Last week Noah put weight on his arms for about 10 seconds assisted.  This is huge for us and we are trying really hard to build on this. 

Noah is a laugher and we LOVE IT!  His aunt and cousins seem to always get him going and he thinks they are just the funniest people on Earth.  I happen to agree :)

E.L.M.O.....Noahs newest favorite thing.  It was by accident that I even figured this out but it has already proven to be a huge thing for us.  Noah will actually try to focus on elmo and hearing elmo sing makes Noah work harder and longer.  I never knew I could love a puppet so much.  We are only on day three in the Elmo world but I am hoping that I can use elmo to entice Noah to do things like turn his head to see elmo or maybe just maybe get him to make some new sounds.  The video is sideways because it will not let me upload it when I try to change the direction for some reason. 

Funny picture I got of Noah yawning.  He just looked cute so I had to share.

Happy Tears

Going through all that we have since Noah's birth I have been able to build this type of strength that has allowed me to not get so emotional or phased by negative things as much anymore.  There are many times that I still get that choked up feeling in my throat where I just wish I could scream and shed a few hundred tears but nowadays I just can't.  I am not 100% sure if this is a good sign or a bad one.  I can cry but now it is like I have to choose where to shed the tears so I don't get too exhausted and can still be the super mommy Noah needs me to be.  Tears are two folded.  A way to express negative times but also a way to express positive ones.  Last night I shed many tears.  They rolled down my cheeks one after another for many minutes.  This time though...they were happy tears.  I have not shed happy tears in awhile and it felt amazing.

As you may be well aware of but if you aren't it takes the strength of an army and the patience of at least 10 people to feed Noah each time.  Something that could normally take 15 minutes takes us around 45-90 minutes each time.  We have to be very precise in how we lay him down in a chair or propped on a pillow, how we hold the bottle, how we hold his chin, how we prepare his food, how we block the light or noise, how we timed it from the last feeding.  Throw in at least 10 other obstacles and then we might get super super lucky to get 4 ounces in him each time.  On the very rare occasion we are able to get 7 ounces in him if he is sleeping and his natural sucking reflex lets him get a full serving without the struggle of the whole suck/taste/swallow/breathe routine getting in the way.  The whole process is exhausting and one that I pray changes multiple times a day.  It is either this or tube feeding again and that is not an option in our minds (ever again!)

This weekend was the worst.  He did not want to eat at all.  We recently changed his formula to a soy base and I am not sure if that was why but he refused to eat even his baby food.  I battled each feeding session and was at my wits end come Sunday night when it took me 2 1/2 hours to get four bites of baby food and 3 ounces of formula into him.  Jeremy took over as he ordered me to go take a nap (I have the best husband :)).  After I woke up I waited a couple hours and it came to the hour of his last and final bottle for the night.  I started to get anxiety over it.

I started to prepare the environment and Noah to fight the battle  so to speak but then I just felt defeated.  I then decided that I just wanted to snuggle Noah for ten minutes to calm myself down before making him and myself frustrated and tired.  Noah was being adorable in my arms.  He never ever ever lets me hold him cradled like a baby.  I have not done this hold for at least five months for more than a second or two because Noah hates it so much.  Last night however he just sat there staring at me as I held him in the cradle position in my arms.  He was smiling at me and just looking at me.  My heart felt like it was going to burst because it was so special for me to have that connection with him.  Then I picked up his bottle, said my little eating prayer I do before I feed him, and as I cradled him he started to suck from his bottle wide awake staring at me.  I burst into tears.  I couldn't help it.  It felt like the week I brought him home from the hospital before all of his eating difficulties.  I was actually holding my baby and feeding him while he was awake, while he was staring at me, while he was smiling...and not fighting the bottle.  Tears were just running down my face the entire time.  At one point Jeremy even came down to ask me a question but I couldn't answer nor could I take my eyes away from Noah's sweet face as he slipped into dreamland but still taking his bottle in the most natural rhythm he has done in months. 

I normally do not share such private moments but this is one of those times where I can't help but want to tell the world "I fed my baby in my arms and he ate!"  It sounds so funny to say that and if you didn't know me or Noah you would think I was losing it but I don't think I will ever forget that moment and will cherish it forever.  Our faces were 8 inches apart, our hearts were 2 inches apart, his left hand sat resting under my chin as his warm cuddly body curved around my waist.  There was no fight, no battle, no struggle.  This was the one feeding session where I wish it would have lasted 90 minutes.  Could I be so lucky to make this happen again this week?  I'm going to take that challenge and see if it can  :)

Genetics + Endocrinology + Speech Pathology = Busy Week

It has been one of those weeks where you just have to call it "One of 'THOSE' weeks!" We were overbooked overly exhausted and so over waiting rooms.  Monday we met with Noah's Endocrinologist.  All good news...which is great!  So far Noah is growing like he should so no growth hormone problems yet.  His Thyroid and other blood related tests all came back normal :)  We are getting his cortisol testing scheduled for sometime in September and crossing all fingers and toes that the test comes back normal as well.  Then...in six months...we test them all again.  It is important for kids with Noah's diagnosis be tested for hormone deficiencies at least twice a year.

***funny side story.  During our hour long wait for the doctor Noah decided to have the biggest blow out of all time.  If I had a pair of scissors with me I would have just cut him out of his outfit it was that bad...and smelly.  I was so embarrassed.  It was everywhere and on everything.  I was quickly trying to clean him as he was quickly trying to spread it everywhere his little hands could reach.  Which of course was the wall, the medical table, his hair and face, my dress.  Thankfully I didn't mind the hour long wait because it pretty much took me that long to clean up the mess.  When the nurse came in I was so embarrassed cause she brought with her a plastic bag because she could tell from the smell down the hallway that it was needed in our room.  One for the books I tell ya.

The next day we had our very first visit with a Geneticist.  He was very friendly and so was his staff.  It was a few hours long and we had to go over all aspects of our family we could regarding diagnosis or cancers or anything else that stood out to us.  The doctor then went into great detail telling us that Noah is officially being labeled as SOD- Septo Optic Dysplasia which is either a diagnosis in itself or an umbrella term to describe many things that fall under the term SOD.  He said that out of ALL the families he has who have been diagnosed as SOD not a single one had another child with the same diagnosis.  Now, he also said that that doesn't mean it can't happen and he has heard of families with multiple children who have it but their SOD is just part of a greater syndrome or disease or diagnosis.  Do far all of Noah's symptoms fall just under the main diagnosis of SOD so this was good news for us.  He also is going to write an appeal to our insurance to see if we can't get the micro-array/snip test done on Noah to see if his DNA strands are fully intact or if one chromosome is missing a part (which would diagnose him with something different).  He said the chances of us finding anything are less than 5% but he has been humbled too many times to say they have never found something from this test with SOD patients.  For now it is a wait and see game to see if our insurance will cover it or not.  He also said that currently technology is evolving and he predicts that in just a mere five years there will tests available to us to do further exploration on Noah's genes.  He said that SOD patients for the most part never find a cause but many of them can rule out genetics being a major contributor.

***frustrating side story: upon leaving this really long appointment I was backing out of the overly crowded and really dark parking garage and backed right into someones bumper.  100% my fault.  While I was hastily looking for children and mommies with strollers I was not paying attention to the fact that I backed up one inch too far and scratched another vehicles bumper.  One sorry note, a few phone conversations with the vehicles owner, and $450.90 later I can put this behind me.  Thankfully, the owner was really understanding and we sat and chatted for awhile about our kids and all the hospital visits we have.  Of all places to scratch a car I guess a hospital might get you a more sympathetic owner. 

No...the week isn't over and neither were our appointments.  After Physical Therapy right after the car incident we were then scheduled to see a Speech Pathologist the following morning.  Noah has been having really runny diapers, a rash under his chin, and a month long refusal to eat.  It takes us literally an hour to feed him every time because he refuses to take the bottle.  Upon discussing all of this with the doctor she said that she feels like maybe might have a dairy intolerance.  If it hurts him to eat he will refuse to eat.  Makes sense to us.  So now he is on a soy based diet...two days in so far and things seem to be improving a little bit.  We will know more over the next couple of days but I hope that this is all there is to it.  She then scheduled us to see a Nutritionist in September as well to go over calories and Noah's specific BMI goals.  Yay...another doctor to add to his already long list of M.D.'s.

Beside all of the doctor stuff Noah has been cute as a button.  He has learned how to blow raspberries and is laughing out loud more and more every day.  He also made a clicking sound with his tongue this week and we hope that these two things might be good signs that he will one day speak.  We have 10 full glorious days doctor and therapy appointment free and we are going to soak it up like no other.

He has mastered the thumb these days

It takes a lot for him to get really comfortable but when he is he is out like a light

taking a break during tummy time