The "Dream"

A few weeks ago, we left our busy everyday lives behind to live a week on The Dream.  Carnival's Dream, in fact!  We left our everyday hectic lives...our normal everyday studies (books and all), doctor's appointments, hospital visits, testing, cell phones, computer's...all of it! 

We've learned that while some wishes come true, all of them do not!  Our wish is that my mom will live to see her youngest grandchild start school, to see her oldest grandchild go to prom or get married or even just to have her for a few more years.  Last October, she was told she only had about a year to live.  You see, this trip was a wish...A final wish.  

My mother had a dream.  A dream that she would someday play in the sand of a faraway beach with her grandchildren.  That she would see their little faces as they laid their eyes on clear waters for as far away as they could see.   

Everyday is a fight for my mother.  A fight to defy the odds.  A fight to see another tomorrow.  We planned this trip a year ago, it was all she wished for and everything she lived for!  My mother suffers from congestive heart failure.  She is in need of a heart transplant, but she no longer qualifies for one.  Her story is not one that I have shared, nor am I ready to, but I will say that she has fought a long hard fight for the past 4 years.  Each day that we have her is truly a blessing!

So, a few weeks ago, our entire family (my mom & dad, my brother & his family, my sister & her family and of course my flock) set out to make my mom's final wish come true!  The flock's trip began with a road trip to Port Canaveral, Florida.  We planned to take 3 days to get there, stopping first at an Aunt and Uncle's house for an overnight visit.  Then it was off to Babyland General Hospital in Georgia, where the girls were amazed by their surroundings.  The next day, we found our way to Port Canaveral for an overnight stay before boarding the Dream.

As we boarded the ship, we were informed that Carnival had changed the itenerary due to tropical storm "Maria".  We were now traveling to Barbados and Mexico.  My mom was crushed!  A very important stop on her trip was St. Thomas and now she wasn't going to get to go.  Things worked out, as they often do and before we disembarked the itenerary was changed back to the original plan.

Our first port was Nassau, Bahamas.  We didn't have long at port there, so we decided to spend a few hours shopping.  With 6 kids, rushing around to try and enjoy an excursion is not really on our bucket list and not really something we could afford anyways.  

Then, it was off to St. Thomas, U.S.V.I.
This was a difficult part of the trip for me, as we made a very emotional stop at this particular port.  We went shopping and visited a jewelry store.  It was very important to my mom that she leave each of her girls something when she dies.  A special piece of jewlery, so that we always remember how much she loved us.  I have to kind of chuckle (with a lump in my throat) that my mom has to think that we need a piece of jewlery for us to remember that, but this was something that was very important to her.  It was one of her last preparations for her impending death to go to this particular jewlery store and pick out something for me because she had something for everyone except for me.  I couldn't really stomach to go into that store with her, so I shopped elsewhere until my dad came and found me, as she found something she thought was perfect and she just wanted my approval.  As I walked into that store and saw my mother sitting there, she looked up at me.  At that very moment, I took a snapshot in my mind and that moment is one that I will never forget.    It will forever be etched in my mind how proud, how happy and how sad she was all at the same time.  Besides being at her dying bedside once before, this was one of the most difficult moments I think I can remember with her.  At my side was my precious little Duckling.  It is no secret in our family that my mom has a special irreplacable bond with Duckling.  Just then, the salesman offered a pearl and chain for Duckling.  My mom's face absolutely lit up.  Her immediate thought was that she would put this up for Duckling and that it was to be given to her on her wedding day.  She is so heartbroken that she will not live to see that day, but for her...this was a way that she could "be there" that day.  When she said that, I took out my camera and started taking pictures.  I'm sure they will be as difficult to see many years from now as they are now, as my mom was very emotional during this moment.  I will see to it that Duckling receives these pictures along with her special necklace for her wedding day.

We then spent a few interesting days at sea.  As it ended up, we went right into the eye of tropical storm Maria, despite rough seas, we made it through safely.

Our last port was St. Maarten.  What a beautiful place it was!  We took a water taxi over to the beach and there, my mother's wish came true!  She finally made it to crystal clear waters and played in the sand with her 10 precious grandchildren.  It was quite hot that day and she couldn't stay on the beach long, but her wish was granted!

My flock had a great time planned for our trip back.  A little ghost hunting in Savannah, Georgia and a stop to ride a real train...but not all things go as planned and that part of our trip didn't work out.

All in all, it was a very hectic vacation!  Traveling with 18 people and trying to get along with everyone and make everyone happy is quite a challenge.  This was a bittersweet trip with a happy ending.  Knowing that we made my mom's wish came true made all the stress that came with it worthwhile.

The time that we have left with my mom is very limited.  We are truly blessed for each day that we have with her.  She has fought a long, hard fight.  She has given it all she has and yet she still tries to smile for every day she has struggles for.  I wonder every day, just what will I do without my mother?  But, I'll never forget how blessed we all were to have this chance to make these memories with her. 

    

If you love someone...

If you love someone...

...you have to let them go

That's the way the saying goes,  right?

Well, I always said my mom was always right and I've almost never known her to be wrong.  The other day, I was upset and talking to my mom.  One of those real "heart to heart" mom/daughter talks.  The kind that I will long for when she is gone.  She said to me "if you really love him, then fight for him and don't let him go".  I find it funny that my sister said the same exact thing and we know she wasn't all to fond of my relationship in the first place...but they both agreed on this one thing and that was that!

For the past 12 days, I've cried...I've stared at the walls...I've forgotten appointments...I've blogged...I've searched for healing...I've tried to let go...I've shut out my friends and family...I've entered into a world where I have never been before and for the first time in my life, I'm so numb...I can't even feel me.  I've been married twice...I've been cheated on, lied to, we've survived abuse, went through a year long trial.  I've been through a lot...and none of it comes close to even comparing to this pain.

So, tonight...I asked a question that I really didn't want to know the answer to and I got just the answer that I didn't want and then I cried some more.  Then, I heard the echo of words Falcon said last week.  "You didn't even try to get me to stay".  Though, the reason I didn't was because it simply wasn't in my personality to do that.  It wasn't like me to put up a fight, but yet just nod my head and say okay. 

As I tucked the kids into bed...Macaw said to me "momma, this is so harder on me than it is for you...I don't understand...can you tell me again why daddy left me"?  Now, I'm not one to sugarcoat for my kids...even my heartbroken confused 5 year old...but, as much as I wanted to pour sugar on any answer I could give her, there just isn't even a way to sugarcoat this.  So, I say to her as I hug her ever so tight "Oh, baby, I know it is so hard and mommy doesn't understand either, but daddy loves you so much and he just thought it was better if he left, sometimes daddy's don't always make the best choices".  How do you explain this to a child who has lost the only dad they have ever known?  How do you explain that something that feels so wrong is suppossed to be better when you can't even convince yourself? How do you convince them to trust that other people who love them aren't going to leave them too?  How do you convince them that when people say they love them as high as the sky, they aren't lying?  How do you teach them how to trust again?  My children will forever be scarred, this will change the inner core of their very own soul.  No time will ever heal their wound. 

As I sat in pure silence hearing only the ringing in my ears and watching the room spin with my aching head...something sparked in me and I couldn't just sit here and do nothing!  I had to fight for something worth fighting for.  I had to fight for that all the things that made me happy, even all the things that drove me crazy and yes all the things I complained about too.  I had to fight for that glow that only he has given me, and for the only person who could get me to dance in the rain, the love of my life, my soulmate and my better half.

For the past two years, we have grown together...he was such a part of "me".  I begged, I pleaded, I cried, I sobbed, I fought for him...for "us".  I gave it all I had in me and drained myself for a little bit more and even a little bit more after that.  He really sees that him leaving is best for everyone's future.  He never did have the best logic.  He had the brains, I had the logic...that's one of the many things that made us work, we just balanced each other like that. 

"Now is not our time" he says, "Maybe one day if it's right we'll find one another again".  He never was good at letting go of other girls either...so I guess maybe it's his time to revisit one of those old love's...to see if their time is right as they meet again...and if that doesn't work, maybe he'll see things differently or maybe one of them will talk some sense into him.

....and you know what mom, for the first time...you were wrong.  I fought for him and I still had to let him go.

If you love someone, let them go.
If they return, they were always yours...
If they don't, they never were.

  

Duckling turns 3

Wow...I can't believe it!  My baby girl turned 3. 



Now, I haven't blogged about my mother, so unless you know her, you couldn't have a full understanding of the relationship she has with Duckling.  Someday, I will blog about that part of our story...but for now, I will say that my mother is very fond of Duckling and we'll leave it at that ;)  



Duckling was quite clear in what she wanted for her birthday.  A Horse.  Nothing more, nothing less...that girl wanted a horse.  While living at my parents for the first two years of her life, she knew nothing more having horse pastures against her back yard.  We often fed and pet the horses and there was nothing better than hearing the "neigh" of those horses to start your morning.  So, Duckling...knowing no different, grew quite fond of horses.  She gets it honest...I was quite a horse lover when I was her age too.  So, it was very important to my parents, mostly, my mother...to get Duckling a horse just like she wanted.  We searched for months and we were finally able to find her a Fur Real Pony.  She was amazed and immediately in love with the horse that she named, Rylee.                                       



Adoring her new horse

It seems like just yesterday, I was in a panic, trying to figure out who was going to go to the hospital with me and who was going to watch my other kids.  I had unexpectedly became a single mother just seven weeks before.  There was so much going on that it never dawned on me, that I hadn't made arrangements.  Normally, I had a plan A, plan B and a plan C in place months before a due date...but I also never had to pack myself and my kids up to move into a Rape and Abuse Shelter just weeks before I was due and I never had to request a change in a court date because my husband's indictment hearing was scheduled too close to my due date...I never had to schedule my delivery, so that I could be assured the capability to show up in court.  I never had to do a lot of things that I had to do around the time Duckling was born.
I had never planned a home birth, this time I did.  Just weeks before I was due, I made the decision that it was best to deliver in a hospital.  I needed to be closely monitored at the end of my pregnancy, as the stress I was under, put a lot of stress on my little duckling.  She was not nearly as active and sometimes she was downright still.  I lost 15 lbs. in a two week period.  I was physically sick and couldn't hold any food down.  Just a few weeks before she was born, I had literally "lost" my pregnant looking belly and was left with a slight hint of a bump.  I didn't get to do my belly cast because I didn't even have enough of a belly to do it.

I entered the hospital late in the evening.  The amount of security I had there, made my life feel like something you'd see on tv.  I wasn't listed on the hospital registery, so anyone who called to check on my was told there was no one by my name in the hospital.  It was also very difficult for anyone coming to visit me to actually get back into my room.  I had security outside of my door and pacing the hallways making sure that we stayed safe.  I had my mother and Cardinal by my side, but in a way, I still felt so alone.  My labor was extremely fast...only really lasting a few hours.  I was induced, but I was able to make it through labor and delivery without the need for pain medications.  There was a point where I did change my mind, but it was too late.  I remember little about Duckling's birth.  Cardinal video taped and took pictures, my mom cut the cord.  Duckling was small, but she was surprisingly healthy.  She did have problems regulating her body temperature on her own, so she did spend some time in NICU.  

Duckling...safe in the arms of her mighty protector!

 

A bond that will never be broken



A ray of sunshine, to brighten our darkest days



In our state, as part of a newborn's screening, they receive a hearing test.  Duckling failed!  She showed no nerve response in her right ear.  She was deaf.  I took the new surprisingly well.  Actually, I was completely unphased.  I really "didn't care".  She was here, she was healthy and that was all that really mattered.  She had made it through so much already...her being unable to hear seemed so minor! 

I had never stayed my 2 days in the hospital, this time I requested it.  The next morning, I received a phone call from my sister-in-law, who said two of my kids were up sick the entire night.  I felt my kids needed me and so, I requested to leave.  I hadn't named Duckling yet and I was not allowed to leave until she had a name, so we were stuck there for a few hours.  It had snowed and I scraped my own windows, so that I could drive myself home from the hospital.  My sister-in-law brought my kids to the hospital and then she took my mom home, so that I could drive my son to Children's Hospital, as he was very sick.  We were permitted to spend the first night at "home" before we had to return to the shelter. 

At the shelter, we slept in a room that was only 48 degrees.  When Duckling went for her week check up, she had lost a lot of weight and only weighed 4lbs. 8oz. so she was admitted into the hospital.  She was released 3 days later, at which time, we left the shelter and moved in with my parents.  I will never forget my in-laws walking in unexpectedly that day while I was waiting for her to be discharged.  It was nearly one of the most uncomfortable and uneasy times I have ever faced.  It was the first day that I had an overwhelming fear of her safety.  This is a fear that will carry everyday for the rest of my life.



4lbs. 8oz. but yet the biggest bundle of joy!



Duckling had so many health problems and so many challenges!  I'm sure that I can't even remember them all!  She often had ALTE's where she would stop breathing, go limp and be unresponsive.  There was one particular time, when I truly thought she was dead and it was like I was living through a nightmare.  My parents witnessed a number of these episodes as well and they too know what it feels like to think Duckling was dead.  When she was 4 months old, she also often projectile vomited about 10 minutes after she ate solid foods.  It was later determined that these things were the result of severe food allergies.  She developed a feeding disorder and received therapy to basically learn how to eat.  She struggled with her weight from day 1, so she was followed very closely by a GI specialist and was put through every test you could imagine.  It took 5 months to get a proper diagnosis on her hearing loss (Enlarged Vestibular Aqueduct) at which time, she received her hearing aid and entered into speech therapy.  She was late on every milestone.  She spent the first few years of her life going to speech therapy, physical therapy and occuptional therapy.  Whe was so tiny, her high chair had to be specially adapted for her by one of her therapists.  She did roll over, but later regressed and at 9 months old, she was just rolling over for the first time.  She sat up by the time she was 12 months old, then she progressed very quickly.  By the time she was a little more than 2, she had caught up to all of her peers...only lagging behind in Language (surprisingly, not speech).





Now, at 3, her progress has been remarkable!  We are awaiting her speech and language evaluation, but considering she speaks in paragraphs...we have no worries.  Developmentally, she has stayed on target.  At only 22lbs. she is followed closely by a new GI specialist, Nutritionalist and an Endocrinologist.  She is tiny, but she is thriving!

Duckling entered into such an unfair world of uncertainty.  She was truly born during the darkest time of our lives!  She was the best dose of medicine my ailing mother could ever have!  She has been the brightest ray of sunshine anyone could ever ask for.  She has brought so much joy and happiness to every member of our family.  She is truly a gift from God and she could not have been sent to us at a better time!  She has come a long way and she has proven that she is the most stubborn little fighter you could ever meet!

Happy 3rd Birthday to our precious Duckling, thanks for all the memories so far...



  

My new hearing aid at 5 months

8 months

10 months

1st Birthday (6-9mo. pants)

1st Birthday Jello Cake (food allergies suck, but I didn't seem to mind!)

My new glasses - 18 months

32/20 Takes my breath away

Last Wednesday was supposed to be the first of my new weekly "Breath Away Wednesday" posts.  I promised friends that I would begin blogging more and that I would post about at least one of those moments that take my breath away every week and I even invited some of my fellow bloggers to join me in my new Breath Away Wednesday.

Well, last week....I sure had no clue what kind of week I had in store for me, and while I did have a few of those "moments"...I sure didn't have time to post on Wednesday.

It all started by visiting my parents last Sunday.  My mom had been sick with an upper respiratory infection for a few weeks and was FINALLY feeling better that day.  We were there for most of the day and we had a really great visit. 

On Monday, our day started just as any other...but something quickly changed.  About 45 minutes after Eagle was awake, he began complaining of a stomach ache.  Then, I noticed that he was having what seemed to be an allergy attack.  His eyes were red and swollen looking and watering, his nose was running like a faucet and he was sneezing repeatedly.  I asked him if he wanted some Benadryl, as it was obvious something had him all stirred up.  He declined and said he was cold and went to sit on the heat vent.  He fell asleep sitting up with his head rested on his med pac.  After about 20 minutes, he got woken up.  When he got up, he looked awful!  He said he didn't feel good and he went to lay on the couch.  Within 30 minutes, he was running a 102 fever and 30 minutes after that he was complaining of an excruciating headache.  I suspected that he may have the flu.  I offered him some liquid Motrin in a medicine cup and he said "I can't take it".  When I asked why, he said he couldn't lift his head.  I called the doctor to get him an appointment and they wanted me to bring him right in.  When I went to get his coat on, his fever was up to about 104.  I put the Motrin in a syringe and tried to give it to him, but he couldn't even swallow all of it.  He was rushed to the doctor without even putting any shoes on him.  We left the doctor with a diagnosis of an ear infection, thrush (from his lung med and previous antibiotic he took for his ear infection), strep throat and the Flu. 

Now, they weren't going to test him for the flu because his strep test was positive, so they assumed that's all he had.  I pushed for a flu test because we were with my parents the previous day and if he had the flu...we needed to know, as I was so worried about my mother!  Now, if you don't know me personally, then you wouldn't know why my mother was such a concern.  Nearly 4 years, my mother suffered a massive heart attack and well, that's a whole blog post in itself...so let's just say, that honestly, my mother simply shouldn't be here today, but as you will someday learn, she is an amazing fighter!  So, each day we have with her is truly nothing more than a miracle.  With that said...her health is very fragile...so, for her...something like the flu could very easily be life threatening.

Eagle, because of his lung condition, was the only one in our house to get the flu shot and oddly enough, he was the first one in our family to get the flu.  He has made it through his illness, with no effect to his lungs!  I ended up in the emergency room with three sick kids and in the doctors office one other time that week, all while being down with the flu myself...and believe it or not...this is not what took my breath away last week...

Remember that wonderful visit with my parents last Sunday, well, we unknowingly exposed my mom to the Flu that day (as the flu is contagious 1-2 days before onset of symptoms).  On Monday, before we left our own doctor's office, I was on the phone calling my mom's doctor's office in an effort to get her a prescription for Tamiflu.  I called them at 4:17pm...their office closed that day at 4:00pm.  So, I was on the phone the next morning. Later that afternoon, they finally called back and they wanted my mom to wait and see if she ended up with symptoms of the flu.  At 5:05pm, I received a call from my mom, who was crying.  She said that about 30 minutes after she had hung up from me earlier that day, she got violently sick and had been continually sick and unable to call any sooner.  Later that night, she was much worse.  Now, anyone who knows my mom, knows how she loves hospitals (input sarcasam here), but that evening she told my dad that he needed to get her to the hospital because something wasn't right.  In an effort to reassure her, he took her blood pressure.  Unable to get any reading at all, he called 911.  She was admitted into the ICU with severe dehydration, kidney failure among countless other things...and you guessed it, the Flu.  Unable to get a blood pressure on her, she had surgery the next morning to have an arterial line put in, so that they could monitor her blood pressure that was too low to be obtained through a blood pressure cuff. 

Still in the hospital, she is very slowly improving!  I'll spare all of the details, but I will say this...she never ceases to amaze the doctors and nurses that take care of her!  Her blood pressure was 32/20!!!  Her doctors can not comprehend how she never lost conciousness.  Anyone in the medical field will tell you that a blood pressure of 32/20 is simply not compatible with life! 

But yet, somehow, she always defeats the odds just one more time...
To say we are blessed that she is still here is an understatement...
Not just this time, but so many times over the course of the last 3 1/2 years...
it is truly a miracle that my mother is still here.

32/20 and she is still here.....now, that takes my breath away!

Worry can not overshadow thankfulness!

I've always loved this time of year!  From the wonderful colors of fall and time to think about all the things we are thankful for to the miracles of Christmas and looking forward to the start of a new year. 

For the past few years, it has seemed that at this particular time of year, as we focus on all that we are thankful for, it is somewhat overshadowed by some bad news we’ve received just prior to these holidays.  It has been my mother’s health that has been the biggest worry.  At the same time, we have been so blessed to have yet another holiday with her, and for that we are so grateful for!  If there is one thing we have learned these last few years, it’s not to take these days for granted!

My mom and Cardinal on Thanksgiving



Group picture of cousins (a few are missing)

Cardinal, Macaw and Duckling
Thanksgiving 2010

 

This year, just a day before Thanksgiving…Eagle had his first appointment with a Pulmonologist.  We should have had this appointment years ago, as he was diagnosed with Asthma when he was 2.  A condition in which was expected to improve and go away by the time he was 5.  Instead, his condition has never been controlled and has continually gotten worse.  Many times he has had “attacks” that sent him to the emergency room, and each time, we were sent away with every diagnosis except an asthma attack!  There have been times when he has grabbed his neck and collapsed to the ground unable to breathe.  There have been times when his lips have turned blue and he has repeatedly thrown up with mucus nearly foaming at his mouth.  During an attack like this, he was once diagnosed with the stomach flu, receiving no asthma related treatment and this was the last time he went to the ER during office hours!  From this time forward, he was treated by his Asthma Specialist on an emergency basis, who explained to me that this incident was caused by a “mucus plug” and that part of his lung probably collapsed.   Anytime he had an attack during office hours, we could go to his specialists’ office and she would treat him with a special pressurized machine when he would get mucus plugs.  This procedure took nearly 3 hours, but it was well worth the wait (even with 6 bored children) and we went through this numerous times.  Most recently, he has experienced panic and episodes of hyperventilation and has developed severe anxiety. 

I have always been very in tune to Eagle and most of the time I can easily tell when he is in trouble, which has been a good thing for him, because people who aren't around him a lot don't pick up on the signs and up until recently, he was really unable to communicate that he was having trouble (another blog, another time).  I have been very overprotective in allowing him to be with people, who aren’t knowledgeable with his condition and/or how to treat him when he is in trouble.  A behavior that has always been driven by an overwhelming fear that his condition is far worse than anyone knows and/or will accept and fear that one of these attacks would rob him of his last breath.  I have this overwhelming need to protect him, the best that I can.   There have been times when I have not allowed him to spend a weekend with his father or that I have asked his asthma specialist to convey the seriousness of Eagle’s condition to his father.  I allow him visits with his grandmother, but I do not allow him to visit her at her house.  I very rarely allow him to visit my own brother at his house, unless I’m there.  I will probably always be this way! 

A few years ago, a pediatrician noticed that he was on an unusual amount of asthma medications and she suggested that he should later be tested for other lung diseases.  We moved and we found a new asthma specialist, who has desperately but unsuccessfully tried getting his asthma under control.  He did seem to have a period of doing well, but this was very short lived.  His attacks got worse and he developed terrible anxiety and panic with his attacks.  After 2 episodes of pure panic and a few more visits to the ER…I demanded that he be refered to a Pulmonary Specialist, as there was no way we could live like this.  His pediatrician sent him for a PFT (Pulmonary Function Test).  The test results showed that he indeed did have abnormal lung function, but they felt the results were within the asthmatic range.  Still, he was given a referral to the Pulmonologist. 

At his first appointment, before seeing the doctor, they performed another Pulmonary Function Test.  When we saw the specialist….he was amazed that Eagle could seemingly function so well in his current condition.  He asked Eagle how he felt that day and if he felt like he could breathe ok.  Eagle said he felt fine and that he was breathing fine.  The specialist listened to Eagle’s chest and noted he heard no wheezing and that it sounded like he was moving air fine.  The test they did during that visit showed something very different.  This is why we have such a problem when we go to the ER and why other family members have such a problem accepting that anything is wrong with him….he “looks and behaves fine” and to a trained ear…he even sounds fine!  The pulmonary function test showed that at best, the large branches in Eagle’s lungs are functioning at 44% and the small branches are functioning at only 17%.  On the day of this visit, his peak flow level was 90 (a number that should be between 180 and 200) and amazingly, his oxygen level was at 98%.  The specialist emphasized how serious my son’s condition was and I was very offended to be told that I take my son’s condition too lightly!  Me, the one who has freaked out and has been completely overprotective since this child was 3….the one who worries about who he’s with, where he goes, etc, etc...the one who complains about how no one else takes this seriously! 

A mother’s intuition is such a powerful thing and I finally had proof to what my gut has screamed all along, so it didn’t really matter that this doctor had no clue how seriously I took my son’s condition….I finally have someone who can figure out what is wrong with my son and I pray that it’s not too late for him to help him! 

Eagle was put on a 3 week dose of steroids and the highest dosage of a new lung medication (a rare one, which I found out…no pharmacy carries in stock).  I understand that the benefits far outweigh the risks, but I sure don’t like that it carries a "black box warning".  Even though this isn't the first black box warning drug he has taken, there is still some level of uneasiness using such a drug.  I researched this new drug and found that it is usually given as a last resort and to children over the age of 12.  As with all drugs, this obviously has some side effects, I'm not to fond of the ones that this drug carries either...loss of bone density, reduced growth, immunosuppression, adrenal suppression and increase in asthma related deaths (this one is hard for me to swallow)!  I have to remind myself that no other treatments have worked and that he can not continue to live in his current condition...this is a last resort!  He will continue to take his 4 other asthma medications along with this new drug.  He was given a new Asthma Action Plan and I was told how to handle emergencies in the ER from now on.  I was told that he should be admitted in the hospital with any peak flow reading of 150 or under.  I was allowed to take him home the other day, only because his condition was chronic and because he was behaving normally.  The specialist says that Eagle is to a point where his body has simply adjusted to this way of living, but that he can not live this way!  If he had normal lung function right now, he would be in a panic saying that he is unable to breathe, but for now…this is normal for him.  This doctor suspects that when Eagle gets to the point where he is saying he can’t breathe and is to the point of being in a panic…he thinks that he would only be functioning at a total lung function of 20% and that would be life threatening for Eagle. 

Right now…my son should be admitted in the hospital and listed in “critical” condition…and he is instead, enjoying an extended weekend with his father J  Can you be any more thankful than that?  I didn’t get to spend this Thanksgiving with him and while I am so thankful that he is able to function so “normally” in his current condition…I am scared to death!  I know how quickly his condition can deteriorate, as I have seen it many times before!  I fear what the future holds for him, but I will remain hopeful!  For now…the steroids are working, as his father reports his peak flows are hitting 200 :D

On Monday, he will have his Cystic Fibrosis  testing (as this does run in my family and he is obviously exhibiting symptoms of the disease).  Next month, he will have some blood allergy testing done and in January, if his condition has not improved under the new treatment plan…he will be tested for many auto immune disorders/diseases, as at that point it will be assumed that there may some disease attacking his lungs. 

So, while this Thanksgiving was partly overshadowed with worry…we still had so much to be thankful for and we are so blessed!   

Cardinal’s choir performed downtown during the lighting of the Christmas Tree and she was in the parade!  We had a wonderful time enjoying the holiday festivites! 



Emu enjoying a ride on the Scrambler!



Duckling and Macaw having a blast!

Bundled up and ready to go



This week we will put up our Christmas tree and decorate our house.  We look forward to spending this holiday season with family and friends and we will enter into the new year with hope!