December 25, 2014

Christmas 2014

Merry Christmas!!
  Before I had the girls I used to have pretty lights and decorations that were all coordinated and the most perfectly trimmed Christmas tree.  I thought it was beautiful.  I didn't really know what beautiful was until I saw my girls decorate the tree with all their homemade ornaments and clumping them in one spot because that's were they could reach and the smile and laughter that they had while decorating it. That's what makes this the most beautiful Christmas tree I've ever had.
  We had to have a two part Christmas because Sadie was in no mood for getting up early.  We tried gently, but it just wasn't happening. Chloe and Aubrie were too excited to wait and it wasn't fair to them to keep them waiting even longer. So we did presents for those 2 girls and us and then a couple hours later we had the girls help Sadie open hers.  It worked out really well.  The girls got to open presents twice and even though the second ones weren't for them, they were still just as excited to open them as if they were theirs.  Here are some random pics of some of their stuff.
Aubrie loves rain boots, so she got a new pair.

Chloe loves fashion stuff, and she got a pair of sparkling silver boots.

The girls wanted desks from Santa, so Santa got them new desks.

They were so happy with them.
  This was a fun Christmas for Sadie this year.  Just like she did with her birthday, she payed close attention to what her presents were this year.  The girls would show the wrapped present to her, and then open it for her on her lap as she watched attentively. Then they would show it to her and she would get a huge smile on her face and sometimes give out a laugh or one her happy noises that she gives sometimes.  And she always had a smile on her face.  The girls got a huge kick out of her and loved how excited her reactions were over her presents.
This was a flashing light wand that Aubrie shopped for all by herself at her school Santa shop. Sadie loved it.

This was a pink dolphin that Chloe shopped for at her school Santa shop.  Sadie thought it was absolutely hysterical. She just kept laughing and smiling at it.

She was so happy that morning.


December 20, 2014

She was a sick a little girl

   This past week and a half was not a fun week for Miss Sadie or for any of us for that matter.  We were all sick in one form or another.  All of us (excluding Sadie) had some sort of a GI bug.  It was the worst.  Thank goodness it is over! The bug itself was short lived, but when it hit, it hit HARD!  Miss Sadie, however,  the poor thing got the respiratory stuff.
   It started last Tuesday when she couldn't stay awake.  She got up at 9:30 in the morning and before she left for school at noon, she took 2 naps and then slept on the bus on the way to school, complained when she got to school when the teachers tried to do anything with her, they left her alone for a few minutes so she could calm down and she fell asleep. She then slept all the way home on the bus. Between 4 o clock and bedtime she took 2 more naps and at 8 that night went to bed. Something was obviously very wrong.  That night started this horrible, painful cough.  That was the beginning of Sadie's terrible 2 weeks of illness.  Over the course of the next few days Sadie could not stay awake.  Thank goodness for her g tube so that I could continue to feed her.  Otherwise we would have had to go into the ER for hydration cause that little girl was not waking up for anything. The cough continued and we would get random fevers, some high 103.6, some low 100.2.  Tylenol would bring them down and sometimes they came back right away and other days they wouldn't come back at all.  I did discover that her body temp is weird and unpredictable.  I know, I knew this a long time ago, but not to this extent.  To really tell when she has a fever is a pure guessing game.  While Sadie was pretty lethargic and not doing anything besides laying there, here hands and feet were freezing and her core was burning up and her cheeks were bright red.  I would check her temp, and it was normal.  I would give her Tylenol anyways and she would perk up and her feet and hands would warm up and her cheeks and core would resume a normal temp and color.  Other times I thought, maybe she has a low grade temp, but not really sure, yep sure enough, another super high temp.  There truly is no true signs with this little girl.  You just have to trust your gut on if she is feverish. So complicated.  Try explaining these signs to a Dr.  They look at me like a I have 2 heads.  I know what they are thinking "she's crazy".  I agree though, sometimes I think I'm crazy too.
   Anyways, over the next few days the fever, lethargy, and cough continued.  Her eyes were swollen and watery.  She looked miserable.  I took her to the Dr (unfortunately it was a Dr that doesn't know her, it was the ill child walk-in clinic on Saturday morning) and since all the vitals and everything checked out ok he said he thinks it's just a cold and sent us home.  I tried to believe him for a couple of days, but my heart told me it was more then just a cold.  We went back to the Dr's office on Monday (again it was not her normal Dr as she was booked solid that day).  I explained everything that was going on and this Dr was a little bit more worried then the last.  She sent us to the ER.
   The ER worked her up for everything. Chest xray, blood work, swabbed her nose and throat, checked her urine.  They were going to find out what was wrong. After 4 hrs in the ER they found that she only had a urinary tract infection and probably just a cold.  Her lungs were clear which surprised me (I thought for sure she had pneumonia).  They sent us home on an antibiotic and said they would call if anything else showed up.  The next day Sadie seemed to have perked up with the antibiotic and showed no signs of a fever.  However, the ER called.  Sadie's test came back showing that she has the flu and she had a positive blood culture.  REALLY?! This is not what we need right before Christmas.  They asked us to come back to the ER to recheck her and redraw the blood culture.  Tuesday night we went back to the ER for another 5 hours.  Sadie actually seemed to be improving with that antibiotic and again all her vitals checked out good.  They redrew the blood culture and then gave us the choice of being admitted to wait for the blood culture to come back or go home and wait for the results.  We went home.  She was stable and improving, I felt comfortable and safe with her being home.  Plus, with Christmas coming there was no time for being admitted.  Too much to do with my other girls with school and stuff and too much shopping left to do.
   We came home and she continued to improve with her lethargy and fever.  She did develop a cold, after recovering from the flu and now has snot pouring out of her nose, however, she's still better then she was all last week.  Last night (Friday) Sadie's regular pediatrician called to check up on Sadie and to tell me that her second set of blood cultures came back negative.  Woohoo!! That means she does not have a blood infection and is not septic. Which also means we do not need to be admitted to the hospital for IV antibiotics.  That was the best news I heard in the past 2 weeks.

 Sadie would be looking at me and smiling at me and as soon as the Dr's or nurses came in....

She would cover her face and bury it in the bed as if to say "If I can't see or hear you, you must not be able to see me either".  Lol

November 17, 2014

first school picture

3 yr old preschool
Even though she is not giving her sweet little pirate grin, I still think this is such a sweet picture of her.  Folding her sweet little hands in her lap

November 14, 2014

She would sit there forever

   We try to move Sadie around to do different things through out the day.  Sometimes our ideas work and other times we fail, she gets mad and throws a fit.  But this we found to be one of her ultimate favorite pass times. Sitting with her head on Chloe's shoulder watching her play on the ipad.  Chloe sometimes puts on Sadie's visual stimulation apps (which is very boring for Chloe to watch, but she does it cause Sadie loves them).  Sadie would sit for hours with Chloe if Chloe would sit in one spot for that long time.  Chloe is an incredible big sister. There is such a sweet bond between these two.

November 11, 2014

The magic necklace

Who would have thought that these would be an answer to one of our small problems?!
   What is this? Baltic amber teething necklace.  A while back my mom was telling me that she was at one of our friends houses and that her little boy was wearing beads that stopped him from drooling.  I just smiled and nodded at my mom.  I won't lie, I thought she was crazy.  Beads can't make a child stop drooling. Right?  That was like 2 months ago or so.  I totally forgot about this conversation. Then a few weeks ago, we had a new neighbor move in next door.  I noticed he was wearing a necklace and asked about it.  She said it was a teething necklace to help with drool. Really?  This is twice now that these beads have been mentioned. I inquired a little further, intrigued abut these beads.  Still a little leery about these beads, she suggested that I borrow them for Sadie and see for myself.  Sure, why not?  I have nothing to lose. Other things that are "not in the box" have worked for her, why not these?  Ok, won't lie, I still thought that this was a crazy idea, however, we borrowed the beads anyway.  Not even an hour after putting these beads on her, the drool stopped.  I just figured it was a fluke.  A few days passed, the top of her shirt was still dry. I thought she probably just wasn't teething at the moment.  Pure coincidence.  Then a few weeks passed and then my husband said to me "Sadie isn't really drooling anymore, maybe those beads do work".  Then my mom commented on her shirt being dry. And then her teacher commented on her not being so drooly anymore and having to wipe her face all the time.
  Are we all crazy or do these beads really work? It really seems like they do.  Heck, why not?  We will get Sadie one of her own.  It's not going to hurt her, the beads can't break apart for her to choke on, and she doesn't put anything in her mouth anyways.
  A few more weeks go by and I still hadn't gotten Sadie a necklace.  But it was time to give this one back to our neighbor.  We had borrowed it for way too long.  I took it off and went over to my neighbors to give it back, but no one was home.  So I came home put it on the counter to try again later.  Later that evening, I picked Sadie up off her blanket and she was soaked from drool.  Her hair was soaked and her shirt.  I was shocked.  As fast as the drool went away with the necklace on, it came back just as fast with the necklace off.  I am now a believer.  These beads work!  LOL I'm pretty sure they are magical!  I am not a naturalist at all, but I really am beginning to believe that there is something to all this natural stuff.

November 03, 2014

October, not a great month

  October was not one of Sadie's best months. She was cranky, cranky and a little bit more cranky.  Her ear would not stop draining.  Have I ever told you just how much I hate these tubes in her ears.  She got this set of tubes in April. May was a good month for her ears, but then the middle of June she got an ear infection (right before her heart surgery), a couple weeks after her heart surgery (still in July) she got another one. Then again in August, September and in October.  Really?  I thought tubes were supposed to stop ear infections?  Nope, not these ones. These where causing ear infections.  It was getting pretty old. 
  Then on top of that she had this cough, sneezing, extreme amount of drool that she was choking on and random fever thing going on.  But the cold wouldn't just come, stay, do its thing and go away.  No, it would come for a day or two and then get better.  Come again for another few days and then leave.  This went on the entire month of October. It was getting really old.  She was cranky, cranky and a little bit more cranky.
  And then on top of the ears and on top of the cough/cold thing she had going on, Sadie also had gut issues. These gut issues had been going on for months (started in April), but progressively getting worse and causing really big issues.  She would be either really constipated or have extreme diarrhea, color was always different, smell would vary.  I know this is TMI, however, you need to see the whole picture.  This does not make any sense.  She gets the same formula, same amount of water, same amount of food, at pretty much the same time every day.  Nothing ever changes.  Her bowels/stool should not change.  Her bowels use to be perfect: same time, color, consistency, daily. So what happened?  Her gut was making her cranky, and more cranky, and then a little bit more cranky. 
  She missed multiple days of school because she was just so cranky.  When I would send her, her teacher would either call me or send a note home saying that she was cranky and screamed the whole time or would sleep the whole time.  This was a causing mommy to be cranky. Why? Because baby wasn't sleeping, baby wasn't going to school, baby was always going to the Dr, baby didn't want to messed with, baby was CRANKY!!  This was not my baby.  Sadie, just like every other human being on the face of this earth, has had her moments when she just wasn't feeling it, wanted to be left alone, and has just had a cranky DAY.  She is human.  But this was different.  It was a day after night after day after night of pure crankiness!  I think I may have lost my mind for part of the month because thinking back now I don't really remember much of it.  But I know that it was a terrible month.  Finally, I had had it! I called some Dr's and begged for help. Don't get me wrong I had been talking to Dr's all month and they just kept telling me "try this, try that, it'll pass".   Ok, well it wasn't passing.  Time for new interventions that were going to work.  If they didn't work, poop may hit the fan!
  Dr #1  ENT.  Obviously he is dealing with her draining ears.  He looks in them, "well I don't think they are healing from the ear infections, we should probably take the tubes out". No s*%t Sherlock.  I have been telling him this the past couple of MONTHS.  He took them out, within a day they stopped draining.  Amazing how that worked.  Dumb!
  Dr #2  Special needs/dietitian Dr.  They are dealing with her gut issue.   Do we change her formula, add more water, start her on a blended food diet, start her on a motility drug, do some testing?  What happened to her gut?  Why the change?  We started going over everything that has happened since her gut issues really started to become a problem. Antibiotics. They seem to be a common theme: tonsils out, ear infection, heart surgery, more ear infections.  All had antibiotics.  Antibiotics change the bacteria count in your gut causing all sorts of issues.  So we are going to treat her with probiotics for a month and see if that fixes her problems.  After a couple of days we still don't have a bowel movement, however, the pain has stopped.  She's not screaming, holding her legs up, rolling side to side in pain.  So something must be working! Right?
  Dr #3  Pediatrician.  Ok, she has got to help with this random cough/cold/fever thing that has been off and on all month.  She examines, listens to all the shenanigans of the month, doesn't really know what to think without putting her through a battery of tests.  We decided that instead of x rays, cultures, blood work, and whatever else she was thinking of doing we would start her on an antibiotic. One that would cover ear infections, pneumonia, strep throat, and something else that I can't think of right now.  But if one of those things were bothering her, or anything else that we hadn't thought of,  this antibiotic was gong to take care of it.  It wasn't going to help with the gut/bacteria issue, however, she was still going to be on the probiotics so hopefully that will counteract enough to move her into a positive direction.  I REALLY needed my happy, easy going little girl back.  Again it's only been a couple of days but it seems to be helping something.
  Fingers crossed now that things keep moving in a positive direction.

***Update:  It has been a couple of weeks and life is back to wonderful again with her.  Whatever was ailing her, seems to be gone.  Not sure which one was the huge issue or if it was a combo of everything.  But it's gone.  We continue the probiotics because we need to use them for a month, but they seem to be working on the bowel movement issue.  HALLELUJAH!! She is sleeping again through the night, the rolling in pain is gone and the CRANKINESS is gone.  Life is good!

October 31, 2014

Halloween 2014

Chloe was a "magic" witch.

Aubrie was a "candy stealing" witch.

Sadie was bat girl


Aunt Taryn dressed up too.  She was a cute little zebra.  The girls thought it was cool that she dressed up.  Gotta love Aunt Taryn.

October 28, 2014

Third Birthday

Happy 3rd Birthday Sadie!
This is my attempt at drawing Olaf on a cake.  Not too bad, right? LOL
  Why did I choose Olaf as her theme? Because Olaf is a little different, a little odd, as funny as can be, so lovable and everybody fell in love with him.  He reminds me of Sadie. A little different, odd, lovable, funny, and everybody loves her.  What better theme can there be for my little girl this year?
  Sadie was really into her birthday this year.  Obviously, she can not open her presents on her own, so whoever is giving her the present gets to open it for her.  In the past, Sadie never paid much attention to what was going on. This year was different.  Every time a new person would come and sit down next to her with a present she would watch intently and smile.  She really got into it this year.  It's the little things like this the truly makes my heart happy.

(No she wasn't sleeping, I just snapped the pic at the wrong time)


Sometimes getting all these kids to look, smile, and act correctly can be a chore in itself.  Geez. loweez!  This one was the best.  However, everyone was happy, so really, what more can we ask for?
   How lucky am I that I have now had her for 3 years?!  I was told I would have her for minutes, then hours, then days, then months. No one ever thought she would make it to a year.  Well look at her now.  3 years later!