She is just cute

I just love this sweet face!

I can't help but take pictures of her (and her sisters) ALL the time!  I just can't get enough of them.  Sadie is looking so grown up these days.  And even though she may not look thrilled to be having her picture taken (again), she really is.  She always smiles right before I take it (because my camera is too slow to take the pic), or she smiles right after because she thinks she is funny and knows she was supposed to smile for the picture.  Sadie is silly that way.

Look how long and curly her hair is getting?!  Even though she hates to have it brushed, I can't even think about cutting it off.

A couple of May activites

Dance Recital

And Soccer

Look familiar?

Look familiar?

  Ohhhh, this little girl.  How can she be sick again? High fever 104.5, no other symptoms except that she is super tired, which always happens when she has a fever.  She was completely fine yesterday, no illness in sight.  That morning she slept in until 11, a little odd but maybe she is growing?  However, her sister also informed me that her throat hurt.  When I looked in her throat it was flaming red. I took her to the Dr to have her checked for strep and while I was there the Dr noticed Sadie wasn't looking so hot.  With the fact that Aubrie just tested positive for strep and Sadie just so happened to get sick the same day, he decided to treat her for strep also.  I'm not completely convinced that it was strep, however, the antibiotic perked her up and she was off and "running" within a few days.  Maybe it was strep? Maybe it was something else.  Not sure, but antibiotics are definitely Sadie's friends.  When she gets sick and they think it's a virus and hold off on the antibiotics her illnesses last for weeks.  But as soon as we start her on an antibiotic she perks up within a day or two.

Heading back to school a few days later. Happy and healthy!

Maybe we figured it out

  Tis the season for appointments, falalalalalalalala!  They always seem to fall together in about a months span. No matter how hard I try to space them out, some how they all get bunched together.  In the past month we have seen the Eye Dr, Dentist, GI Dr , Neurodevelopment Dr and then coming up in the next week or so she is seeing , the Endocrinologist, Pulmonologist, Orthopedist and having an ultrasound and sleep study.  Yep, just a few appts.  BUT that's ok, it's helping to keep my daughter healthy, happy, and progressing.  And to me that's all that counts.
  As I mentioned one of the appointments was with her neurodevelopment Dr. As I was chatting with her about this pain issue, she was also assessing her.  Again she really didn't come up with anything that struck her as odd or off about Sadie.  Nothing seemed to hurt as she was pushing on her belly (or pushing on anything for that matter). She also was at a dead end with this pain issue when she decided she wanted to check a urine sample to see if she had an infection, so we caught a sample and I took it too the the lab after her appoinment.  Expecting it to be normal cause she showed no symptoms of a UTI, I totally forgot about dropping the sample off.  Later that evening I get a call from the Dr's nurse saying that the ua was indicating that she had an infection?  WHAT!?  Seriously? I would have never guessed in a million years that she had an UTI. Sure enough, a couple days later the Dr's office called me again and said that the culture grew bacteria.
  The Dr herself called me to tell me the results.  She also went on to say that since we were unsure how long she has had this infection, and she has been in pain since January, and the fact that her BP was slightly higher then her normal,  she wanted to get an ultrasound of her kidney's and bladder to make sure there was no damage from the infection.  Come on!  This is the last thing that this child needs.
  Good news!  A few weeks later we went to the ultrasound and it was negative, no damage!  Yay!!  And the pain seems to have stopped.  Yay!!  And the repeat UA was negative.  Yay!!  My poor baby had a UTI and was having bladder spasms.  That's what was causing all the pain. My heart broke a little bit wishing that it was caught earlier.  Those are the moments that I wish that Sadie could have talked.  

And they're off and running!

  Chloe and Aubrie ran their first races.  Chloe's was a 5k and Aubrie's was 1 mile. Not sure where they got their love of running because it wasn't from me or their dad. But they love it and they are good at it.  So proud of these 2 girls!

Before the race



After the race!

Standing with help

"I think I'll just stand here leaning on the coach and watch my ipad for awhile.  These zebra's and monkeys are pretty funny".

Sadie acts like this is so natural and second nature. Like she has always been doing this.

In March Sadie got a taste of what it was like to stand.  Since then this little girl likes to practice standing.  She is not able to get into the position by herself yet.  I believe that eventually that will happen, but first she needs to overcome her tactile issues and touch things.  In the meantime, this is a beautiful sight and I will take this moment and treasure it.

April 25, 2012

  4 years ago to the day was Sadie's first surgery. It was for her feeding tube placement, nissen fundoplication, and a hiatal hernia repair (which was a surprise to everyone). I remember being scared, but so thankful that day.  Scared because it was the first time she was going to be under anesthesia and we had no idea how she was going to react to it.  And thankful because finally we were going to get this tube and tape off of my babies face.  It was almost like seeing my babies face for the first time.  I could really study it and get to know every little smirk, smile, dimple, crinkle of the nose.  I could stare at her for hours without being worried about putting a tube back down her nose so that she could eat.   I also remember being so thankful that we live in a generation were a feeding tube is able to be placed.  It broke my heart to think about all those babies way back when that couldn't suck and ended up starving to death and how those parents had to have felt.

  Sadie handled the surgery great.  No complications and not many signs of pain.  The only time that things got a little crazy was the morning after her surgery. It was about 6am and Sadie started fussing and then the fussing turned into screaming and then all her vitals were going all wacky.  The next thing I knew the entire crew flew into her room; dr's, interns, residents, nurses, nurse techs, respiratory therapists, lab techs.  Orders were flying left and right, vitals were being taken and repeated again.  I was trying to figure out what I missed, I didn't call anyone in there.  Finally, I realized that they were all freaking because of the sudden change in her vitals.  Just as I realized that this was the issue, her surgeon walked over to talk to me about what was going on.  I let him talk and then I said "I think she is just hungry, she hasn't eaten in 30 hours.  His jaw dropped, he turned and asked everyone that was in the room why she hadn't been fed yet and no one had a good answer.  He said loudly "Feed the child"!  He then apologized to me and to Sadie and walked out.  Needless to say her nurse returned in minutes with her food.  There was not even 5mls in her stomach and she settled right down and all her vitals started to return to her normal.  Amazing what food can do for a human , huh?

Morning of her surgery.  Last picture taken with the NG tube.  Sadie was so happy that morning.  She probably knew she was getting that tube out of her nose permanently.

Resting  peacefully after surgery.  That was the last day she ever sucked her thumb and the first day she developed her tactile defensivness.  She's never held anything in her hand since or put anything in her mouth again.

Of course the big sisters came to visit and watch over their baby sister.  I thought this was a sweet picture of the 3 of them, but then I realized it was the back of Sadie's head.  So we took another...

Oh Aubrie... she is my funny little girl.  Always was, always will be.

GI appointment

  For those that don't know GI stands for gastroenterologist.  That is a Dr that is hopefully going to fix my baby girls gut!
  Finally, the day of Sadie's appointment.  It's not like it took a long time to get in to see him, but when your child is screaming in pain, everything seems like it is in slow motion.  The Dr was really nice. He listened to everything; her history, current issue with pain, my concerns and current plan with her meds, and what I wanted out of this appointment.  I explained that I have this huge fear about her intestines becoming twisted because that is so common for kids with Cornelia de Lange Syndrome.  Every time she screams in pain my thoughts immediately go to a bowel obstruction and I become a total mess, second guessing my every thought and action. He reassured me that at this point she does not have any signs of intestinal malrotation.  He examined her and talked about all of her past surgeries and tests that she has already had done in her lifetime.  There are no signs that this is the issue. He gave us his thoughts and his plan for moving forward and how to help with her pain.
  I won't lie, I was a little reluctant to follow his plan but I will.  Even though I feel like I have he constipation under control, he still feels like I don't.  So he wants me to work on increasing and decreasing and changing the meds all around, and consistently giving her something every single day no matter the outcome until we get her consistent and going daily.  Hopefully this will help with the painful screaming.  Fingers crossed!

What is this PAIN!?

Pain.


Let's talk about pain, Sadie's pain.


Sadie has a very high pain tolerance.  She can hit her head, be poked with a needle, hit by a ball, fall off her chair and very randomly does she ever cry. She'll just look at you like "what was that for" and then she goes about her own business.  However, that high pain tolerance only holds true for external pain.  When it comes to internal pain, this girl will let you know.  Then the guessing game begins.


Our thoughts always go straight to her gut.  Is she constipated? Maybe we need to vent her tummy?  And generally fixing those 2 problems will solve the pain issue.  But recently (since January) her constipation issue is getting harder to fix.  We used to be able to give some miralax and/or a suppository and problem solved and she would be good again for another few months.  Her constipation was not an everyday occurrence, just an every few months issue.  Well that is not the case now.  She seems to be more constipated, then not constipated.  Why all of a sudden her gut is having this issue all the time is beyond me.  I increased her bowel meds and added other meds and took away meds and adjusted other meds and finally I got her to a somewhat normal happy bowel regimen.  Her poop was good, no more constipation.  We went a week and half. No screaming in pain and good bowel movements.  Yay, momma fixed the problem!  Another point for me. Until one day the screaming in pain returned. NOOOO! It could not possibly be constipation, I have that problem under control.  So what is it?


I talked to her Dr and we went over all of her systems; neuro, resp, gi/gu, skeletal, immune etc... Everything was negative.  I still felt like it was a gut issue, so we got a consult for a GI Dr.  Yes, we had to add yet another Dr to Sadie's list of specialists.  Honestly, it's actually a little surprising that we have waited this long to add one, especially with all the gut issue that she's had the last 2 years.  Yay! for us for holding out this long.


The GI office called and the appt was set for about two weeks away.  Which was fine, we had gone this long, we can survive another couple of weeks.  I was wrong!  One day she started screaming, I did all my tricks, including giving pain meds and it wasn't working.  She just continued to scream, rolling all over the place, grabbing her stomach/chest.  I couldn't take it anymore. I started crying and getting so frustrated cause I felt so bad.  This poor child has been screaming in pain since January!! That's it, I've had it, I'm taking her to the ER!  I can't handle that painful scream anymore.  We got ready and right as I was going to walk out the door, the screaming stopped and she passed out from exhaustion (which is her normal way of coping, it just took way longer this time).  I then calmed down and started calling her Dr's.  Something has got to give! Her Dr got her GI appt moved up and her nutritionist was going to look over her diet and talk to the Dr about possibly changing her diet to see if that is the issue.  I had multiple people working on different things to try to help this little girl.  Something has got to give... and SOON!

Just something about these places

  Today Sadie went to the dentist.  It's not her first time.  She's been there about 5 times I think.  As I was sitting there watching her, with this man hovering over her with instruments in his hand and in her mouth, I was in awe.  She was so calm, no crying, no fussing, no fighting, no nothing at all.  Now, did she just open up when he said too, no, cause she can't hear. But when he opened it with his tools, she opened instead of clenching her jaw.  No, she did not hold it open on her own free will because she doesn't have that understanding, but she didn't fight the soft block he put in her mouth. She just laid there, quietly, letting him do what he needed to do.  The dentist did not clean her teeth, as she doesn't need them cleaned yet (a perk of being tube fed and drooly).  But he did paint a fluoride on them. She just sat still.
  Sadie is like that: calm, happy, and content when it comes to Dr's (medical, eye, and dentists).  Whenever we are in their presents (and she's feeling good), she just is happy.  She lays silently and smiles, occasionally giggles and wiggles.  She stares off into space, completely mesmerized by the environment.  She never fights the Dr. She lets them do what they need to do. The first few times I thought it was just a fluke, but the more time goes on, the more common it's becoming.
  I don't know if it's just the feel of the environment or if she just feels a trusting vibe from the Dr or if it is because we are in these environments so often that they are second nature to her (which would be really sad), but her demeanor just amazes me.  She amazes me (have I ever told you that before?  ;) LOL)!  For a little girls who can't hear directions, or hear me prep her for the visit and what is going to happen, or who supposedly does not have the mental capability to understand what is going on, she sure does behave like a little Angel.  Just one more sign that she is an Angel that God sent to earth for me.
 

I Have This Fear That People Think Our Story Is Sad

Guest Post:  I couldn't have said it any better myself.


  Several years ago when my daughter Julia was about 2, I met up with a friend for coffee at Starbucks. We had just settled in to our seats with drinks in hand when two little ladies shuffled by us. Upon further inspection and a little eavesdropping I realized the pair was an elderly mother with her adult daughter, who had Down syndrome. Both my friend and I observed them for a few moments before turning back to each other. I was about to comment on how precious the two of them were when my friend spoke first and somberly said, “Some days you see the sad ones.”  I’m sure my face fell. Sad ones? I had not expected that.

  I don’t remember what I said in response; I probably just tried to move us quickly on to safer ground. But the moment stuck with me. We had just witnessed the very same scene but saw two very different stories.
  I saw happiness and family. I saw something I prayed for in my own story: many more years with my daughter.  My friend saw sad.

***

  I have this fear that people think our story is sad.  That people hear or see “special needs” and automatically categorize us as sad.  And no matter how many times I profess the opposite, some people will continue to think my words are nothing more than a positive spin on a negative story.  And no matter how many different ways I try to explain that Julia is a blessing, people will assume I am simply making the best of a bad situation.

  I fear the assumption will remain for some that we are putting on a brave face to hide our disappointment. That we are somewhere between a saint or a martyr for loving our child. That we are admirable for continuing to put our best foot forward given the hand we’ve been dealt, but the bottom line remains our story is sad and we are the sad ones.
  And while I know I will never change every person’s mind on this, the fear of being so grossly misunderstood drives me to keep trying. Julia deserves that.  So once again, for the record, we are not sad about Julia.
  We are not enduring her, we are not tolerating her, we are not suffering as a result of her. We love her, and we like her. And it hurts when loving her is seen by some as heroic — it hurts because nothing could be farther from the truth. It does not take heroism to love our child — and I wonder what I am doing wrong in telling our story that some would still think this is the case.
  In regards to the compliments we are given, I am grateful for them and humbled by them. I know they are being given in kindness, and for that I say thank you! But I do not make the connection between Julia and these qualities. I hope I would be that kind of person with or without Julia. I have a long ways to go, but I want to be a positive, optimistic, grateful, strong, brave, vulnerable, compassionate person period. Not in spite of something or someone.
  And the same is true when I do not display those positive attributes (which is most of the time). When I am moody, and negative, and anxious, and snarky, and grumpy, and overwhelmed — I am those things by my own doing — with or without Julia. She is not to be blamed.
  If I am positive it is not an act of overcoming Julia; if I am negative it is not to be blamed on Julia.





  If you see any good in me, it is by the grace of God.  And when you see the bad, the fault is my own.
  A lot of people are happy in seemingly hard situations and miserable in seemingly great situations. I think we have to stop assuming we understand situations based on appearances and let people tell us how their story goes — and then believe them.
  My story with Julia is a good one. My situation makes me happy. She is my best gift. She is not the hard part of my life; she is not where I have to be brave or dig deep.
  In her memoir, Lena Dunham wrote this in response to people praising her: “It’s not brave to do something that doesn’t scare you.”
  This is how I feel about my life with Julia. I’m not being brave; she doesn’t scare me.  What scares me is thinking about life without her — that is when I have to be brave.
  A little girl with epilepsy died suddenly two days ago. She had been doing well recently, she wasn’t even in a really bad place with seizures. But she died. Unexpectedly. At the age of 13, while sleeping in her daddy’s arms, because of epilepsy.
  This scares me.  And this is the sad story.  But not ours. Not yet. Not while we are still together.
So friends, will you promise me something?  Will you promise me you will try to fight the thought that we are a sad story? Will you trust that the story I am telling you is the true version? That Julia is a blessing, without qualifiers. And every moment we get with her only makes this story better.
And if, God willing, we are given many more years together, and we get to be little old ladies, leaning on one another as we shuffle side by side through Starbucks, will you promise to think to yourself when you see us go by, “Some days you get to see the really happy ones.”? And that will be the truth.




By Laurie Arnold  Follow this journey on I’m Julia’s Mom.

Check her out!

  The other day my mom was at my house and she was going to take Sadie outside to put her in her wheelchair, as her school bus would soon be arriving.  She was about to walk out the door when Sadie wiggled a little funky and my mom wanted to put her down to readjust her position.  As she was bending over to put her down, Sadie decided to put her feet down. It pleasantly caught us off guard.  Sadie decided to just continue to weight bear on both legs.  Then my mom decided to let go to see what Sadie would do and VOILA! She stood there all by herself, head held high and back straight.  As we were watching her, I was wishing my cell phone wasn't dead so I could take a picture, thinking that by the time I ran and got my real camera, she would have fallen.  However, she continued to stand there like a champ, just staring at me.  I decided to attempt to go get my camera.  Not only did she continue to stand but she followed me with her head, watching my every move.  I came back and snapped a few pictures, then she started wobbling and my mom caught her before she collapsed.  We were in complete shock!  My baby stood!  It was the most beautiful sight.  I was told to never expect anything from her. Here she is standing alone, no one holding her up.  Yes, she was leaning a little on my mom legs, but that was it.  We rarely see her weight bear on both feet, at the same time, for a long period of time without being in her stander.  In the past, and even today as I write this, when we hold her/attempt to stand her, she will either pull up both her legs like an infant, or she only puts one leg down, like a flamingo.  Not sure what came over her at this moment, but I'll take it!  I'm not naïve, I know that this was probably a freak moment, BUT if she does it once, she will do it again.  She's proven that to me over and over again.
   After my mom put Sadie on the bus to go to school, she also left my house.  As I sat there alone, thinking about what I just witnessed, I started to shake from excitement and adrenaline and I cried happy, disbelief tears.  Thinking back to Sadie's first year of life and listening to all the negative things that all these Dr's kept telling me.  How I kept thinking they have to be wrong, I had so many hopes and dreams for my baby and had so much faith in her, but yet got so discouraged at times by what others would say or even sometimes by Sadie's own actions..  All the therapies, all the Dr appt's, all my own therapy sessions with her at home, they are all worth it!  How proud I am of this little girl.  How far she has come.  How she is proving Dr's wrong, left and right.  It was such an over whelmimg feeling.  I don't even know how to describe it.  Every moment, every comment that has been made, every tear we shed,  has all been worth it when I see her accomplish a milestone.

Hope sees the invisable, feels the intangable, and achieves the impossible.  -Anonymous

Goal Met

  For this school year one of Sadie's IEP goals was to be able to tolerate being upright for long periods of times and to sit independently up to 45 minutes.  Check! Goal accomplished.  :)  This little girl is awesome at sitting.  Well sitting in a chair, on a bench, or on her new bed!  Unassisted with no back behind her.

Sitting so perfect and proud!

  We are still working on sitting on the floor.  She's done it a few times, but not enough to say that she has the skill.  Weird, she can't figure that out. You would think that it would be easier because of having a wider base with her legs in a ring shape.  But that's ok, we will continue to work on that skill and use the skill of "chair sitting" for now.

   

Why Dreaming Big Is Mandatory

Guest Post: by Stacy Warden

When you dream big about your child’s future, others around you have a tendency to think you can’t grasp the hard truth in front of you.
Dreaming big doesn’t mean we’re ignoring the challenges that our child faces or the probable outcomes based on medical predictions.
When we dream big we encourage others to dream big with us.

And dreaming comes in all different forms and sizes.

While we all of course are dreaming the ultimate dream – complete recovery and healing for our child with special needs – we have so many other dreams that have the potential to be life altering.
We can dream about the invention of a new product that would make it easier for us to travel, for our child to participate with his or her peers, or assist them tasks needed for independent living.
We can dream about new technology that will allow us to hear our child’s voice, digitally enhanced by using their own vocal sounds to create what their voice would actually sound like if they were verbal.
We can dream about a world that never stares at a child with special needs.
We can dream about government resources and insurance benefits not being so hard to access.

We can dream about lots of things and it’s okay to dream big - because dreams can and do happen.

When we dream big we plant the seed of greatness to grow.
We are challenging the universe to put our intentions into play.
Dreamers are never low on hope because they know that anything remains possible.
People might want to try to convince you that dreaming sets us all up for disappointment on the special needs journey, but I tend to think it’s just the opposite.

Dreaming presents us with recognizing there are endless possibilities, sometimes it even encourages us to chase them.

Parents designing equipment that they know that could benefit those with disabilities; parents knocking on the footsteps of Congress dreaming of changes that will allow those with disabilities to be able to change in public restrooms with dignity, dreams that we can make this world a better place for our child so they will be safe and supported once we are long gone and or no longer able to care for them.
Dreaming is more than okay.
And we need to hold onto all these dreams.
And then we need to find active ways to try to make these dreams a reality.
And maybe secondary dreams could happen in the process; like watching our child sit for the first time, speak “momma” and then form sentences, and then talk non-stop, or be able to transition to eating solid foods… dreams are endless.
Don’t give up on them.
It’s healthy to dream.  

A new bed!

  A while back I wrote a post about looking for a safety bed for Sadie.  As I was looking, I also started to deal with insurance, looking for grants, charities that donate beds, and I reached out to facebook looking for a carpenter.  I was going no where fast.  Insurance is ridiculous!  And I know I've mentioned it in this blog before, but I HATE dealing with them!  They do not care about special needs what-so-ever.  They barely cover equipment or food or prescriptions or appointments.  You have to fight and fight and fight, while they deny, deny, deny and then FINALLY they will "cover the cost", and it's a smidgen of the cost.  Our society has failed our special needs community, but that's for my soapbox story some other time.
  Just as I was feeling the frustrations of going no where, my prayer was answered.  My mother in law ran into her cousin in a store who she doesn't speak to often.  As they got to talking she discovered that he had made a safety bed for his grand daughter, who has cerebral palsy, a few years back.  Bless this mans heart, he said that he would be happy to make Sadie a bed.  He is a retired carpenter and was looking for a winter project.  Could this really be happening?!
  He came to my house and we chatted about all of Sadie's needs and her future and he shared his stories and his love of his grand daughter.  He then showed me pics of the bed that he made for her, It was exactly like the beds I had picked out. He then took measurements of me, Sadie's room and the mattress that she would be using, so that it would be totally customized to our needs.  As he was leaving he stated that it should be done in a few weeks. WHAT?!  A few weeks?  I was expecting to get her bed for a her 5th birthday, that's why I started after her 4th birthday, in HOPES of getting it by her 5th.  I figured this whole process was going take at least a year.  He also said he was only going to charge me for the materials. $400-$800 versus $7000-$10,000. WHAT?! Seriously? God bless this man!  Sometimes in the special needs journey, well I guess any journey, you can get so frustrated that you stop having faith in humanity.  Then something happens and a person appears in your life, and faith is restored.  It's like a breathe of fresh air when you don't have to fight for something.

  A couple weeks ago he delivered and set it up.  It is absolutely beautiful and perfect (and huge and sturdy).  And Sadie LOVES it.  It is a twin size bed.  She can turn circles in this bed without hitting the sides with her head, legs, or arms, like she has been the last 6-9 months or so in her crib.  She can even lay the width of it all stretched out, without hitting the sides.  We love it and she loves it. What else could we ask for?  Thank you Joe, you truly are an Angel to Sadie and our family.

 

 

 

Two Appointments

  At some point in Sadie's month and half of being sick we managed to venture out on her "good" days to see a couple of Dr's, the neurologist and pulmonologist.  Appointments I had been anxiously waiting for since her results from her last sleep study.
  Neurology appointment:  With such a huge change in Sadie's breathing while sleeping, there was a thought that maybe this was regression or deterioration of part of her brain.  That was my main question for the Doc.  After an examination (one that Sadie slept a majority of) and a million questions. It was determined that it was not deterioration.  She is progressing too much in too many other areas for that to even be a question.  Although he really couldn't answer my question as to why her sleep apnea has gotten significantly worse.  We both hymned and hawed over doing another MRI of her brain, but we decided against it.  I'd rather save more radiation to her little body for when something major or a significant event happens.  Over all it was an uneventful appointment but reassuring that he didn't think it had to do with changes to her brain.
  Pulmonology appointment:  This appointment I dreaded, but still really wanted to know answers about her sleep apnea.  I also was "happy" that Sadie was still sick cause I wanted to know her opinion on her lungs/breathing/overall respiratory status. The Dr examined her and said that her lungs were not really that "junky" sounding and that it was more of her upper airway. She just suggested the deep suctioning which is what i had been doing. So that was reassuring.  Then it was on to the main subject.  I think I asked her a bazillion questions, some questions that I don't think she was prepared for and kind of threw her a little bit as she stumbled for words/answers (but that's ok, it keeps her on her toes).  The two topics the we discussed: 1. Was the change as significant as the respiratory therapist made it sound when she gave me the results and 2. is there anything we can do about it?
  Was it as significant of a change as the therapist made it sound?  The answer, unfortunately, was yes.  The Dr explained that all of Sadie's sleep studies have progressively been getting worse, but this one was a huge jump.  A ratio (and no I don't know what ratio it is) doubled itself in 9 months and with that big of a jump it means that the oxygen that she currently wears at night is no longer triggering her brain to breath. Not good.  I knew what was going to come out of the Dr's mouth next.  Before she could say anything I asked her "are we at the crucial point that something needs to change or do we still have room to play with because I am dreading what you are going to suggest".  She paused (for quite a bit) looked over all of Sadie's test results from the last 4 years, "looked back at me and said "Yes, I feel like we are at a crucial point that we need to change something.  That was a pretty significant jump for 9 months".
  The plan:  Sadie is going to have another sleep study, but this time it is for her to trial a c-pap and/or a bi-pap machine for her to wear at night.  These machines do different things, but essentially the point is to "breathe" air into her when she doesn't take a breath on her own.  *sigh* I am truly dreading this machine cause i know that Sadie is not going to be happy with this mask over her nose, nor will she like the fact that she will have a much harder time flipping and rolling around in her bed.  But if we are at the crucial point, then this is what we are going to do.  We are just going to have to make it work.  The Dr did say that sometimes these machines don't help either, or the sleep is worse because of the fighting of the mask and at that point the mask is doing more harm then good.  But only trial and error will tell us what direction Sadie will go in.  So now we wait for the next sleep study.

The last month or so

  Oh my goodness!  It has been a busy couple of months.  As you know Sadie was sick mid January.  High temp, then a wet cough.  Then she seemed to get better for a few days, and then went back down hill again.  At the end of week 4 of her still being sick I called her Dr and they started her on an antibiotic (did I not call that one? She always ends up on an antibiotic). We were guessing at that point she probably had a sinus infection. Who knows if that's what it was or not, but it worked.  A 10 day course of amoxacillin and voila! she's back to healthy again.  Or so we thought.  We had a one healthy week and then back to a high temp and sleepy again.  Really, again?

Yep!  Luckily, it only lasted a week this time and then her body kicked back into healthy mode.   Now we are just finishing up week 2 of being healthy and there are no signs of illness.  Fingers crossed it stays that way, but I figure it's the end of winter and no one in the house is sick right now, we may be in the clear for a while.  One can only hope, right?

  She also developed a new rash.  I thought is was from the amoxacillin at first cause thats when it appeared.  Now I'm rethinking the whole thing.  It's still there.  It doesn't seem to bother her. But it's spreading.  I guess we will be going to the Dr for that at some point.  I think it is exzema.

 

 

 

  So besides Sadie being sick for about 6-7 weeks, I also started a new job.  I've been searching for a "work from home" job as an RN for the past 4 years.  Never actually thought I would find one, but was hopeful.  Well, I found one.  My prayers were answered.  I started the training a few weeks ago (you know, right in the middle of Sadie getting sick again, perfect timing. NOT!).  So in a few months, when I'm deemed competent, I will be able to work from home.  I'm praying this all goes as well as I'm planning and playing it out to be in my mind. Again, only time will tell.

  Aubrie also started basketball.  She's not on a team, just taking classes to learn about the game.  Does that little girl love it!  She is definitely my little sports girl.

 

 

In the last week...

Anybody notice a theme here?

Friday

Saturday

Sunday

Monday

Tuesday

Wednesday

Thursday

Yep, you guessed correctly, Miss Sadie is sick.

  

  Last Thursday Sadie came home from school and was not acting like herself.  No symptoms of being ill, but she just seemed sad.  No laughing, smiling, giggling, playing, just a sad stare around the room.  I knew something wasn't right, but I was just hoping that she was just really tired because she had only slept about 6 hrs total, off and on, the night before (her usual is about 10 or so, straight). I put her to bed early and she slept all night and all morning.  Finally I had to wake her up at 11:15 to go to school. Unusual, but I figured she was just catching up on her sleep. She came home from school and the bus driver said she had slept on the bus, both ways.  Strange, but it's happened before. I figured her teacher just worked her extra hard. She seemed a little out of it, like she was groggy, but she was making eye contact and rolling around happily.  Couple hours later, she was out like a light while I was making dinner.  My gut then said something was up with her.  After dinner I picked her up to put her to bed and she was burning up... fever 104.2.  Crap!

  That is how the whole thing began.  We battled high temps (101-104) with no other symptoms. Pulse oxygen was fine, heart rate was fine, color was good, lungs clear. I had talk to the Dr who thought it was fine to keep monitoring her at home. When she still had no other symptoms, on Tuesday, I finally decided to take her to the Dr.  I hate taking her to the Dr. After I left the office, I remembered why I hate taking her to the Dr.  I always get the same thing. "It's a virus".  They run no tests or x rays, they just look at her, do their usual listen and look and then say "it's a virus, call if she doesn't get better in a few more days".  It's not exactly that cut and dry, but that's their whole point. That's the same line that I have gotten the last 3 or 4 times that she has been in there sick.  Then 2-3 days later we go back or call saying that she is not better, they put her on an antibiotic and she gets better.  It's so frustrating! Don't get me wrong, I love her peds Dr office, and I generally love that they don't run a bazillion tests, but sometimes I don't think they realize that Sadie is different and presents differently with her symptoms then most kids. I hope I'm wrong this time, and they are right.  Fingers crossed!

  Today was the first day that we haven't had a fever.  YAY!!!  However, now she has a wet, sick sounding coughing that is weak and random.  Who knows if this is the same virus that we started with last week or if this is just a new virus that attacked her when her immune system was vulnerable.  Not sure. But I really, really hate seeing her sick.  My anxiety level goes threw the roof.

Our winter break fun

Christmas break was fun and busy.  It was a little different cause we haven't had much snow so it was kind of hard to get into the season, but we did it. And made the most of our break.

The girls made a gingerbread house.  They had so much fun. 

Sadie stood and watched them the whole time, which was about and hour or so.  Yay, Sadie for tolerating standing for that long.

Chloe is in the choir so she had a couple of Christmas choir concerts

She also is in dance, so we had a Christmas benefit dance recital.

Christmas Eve Mass

Sadie looks so tiny in this pic sitting between the 2 girls.

Chloe sang in the choir during mass, so Sadie and Aubrie hung out together.

Just some random pics

She kept trying to turn around to look at the lights

She loved looking at the packages. Especially this one

We finally turned her around so she could look at the lights on the tree.

Sadie sat in this chair for so long, hours in fact.  My family that haven't seen her lately were shocked at her progress.  With only one tumble to the side, head first and then one scootch of her butt forward and a gentle slide forward onto the floor.  She sits like a pro in chairs, but we are still working hard on the floor sitting.  But I'm confident she will sit like a pro on the floor at some point in her life.

She got a new hat and mittens from her great grandma and gave us the sweetest smile as soon as we put it on her head.

She was thrilled with this headband. No, not really.

News Years Eve

Cheers