BINGO

I had 2 different ways of starting this post floating around in my head this afternoon. I thought maybe I would just type these words and nothing else:
Sloane has pneumonia. I assumed that that simple sentence would tell you where we are in our journey.

Then I thought I would post this picture and that would explain what is going on in our world.

Those are the 2 short stories. Sloane has pneumonia and Simply Thick is now BACK on our new kitchen counter top after being gone since Thanksgiving.

The long story starts quite rapidly with the onset of vomiting on Friday night, a spiked 104.6 fever on Saturday that became ongoing, move on to a doctor's visit on Sunday with no answers bc Sloane's ears, throat and lungs were clear, then there was more vomiting accompanied by a daughter that resembled a wet doll bc her fever was 103.8..... so today we had another doctor's appointment.

We had a mirage of tests. Some routine (strep), others heartbreaking to watch (cathetered for an UTI and flu swap). As all of them came back negative, the last one was a chest x-ray. We both were surprised at the thought because Sloane's lungs were clear both yesterday and today. But the on call doctor in our practice explained that Sloane is unable to take a deep breath as a child so he wanted to be sure. It made sense so we went with. Not without longing for our ped who we LOVE. How dear, she go away????

Off to the radiology lab we went. Sloane, by this time, was exhausted. She had been violated in too many places for a child in one year never mind in 10 minutes. I was starting to get silent...not a good thing. My hubby and I were dying for an answer because this "virus" was going on too long and was to nasty for our liking. We headed back to the drs. office after the x-ray to wait. He told us blood work was the last resort if the x-ray was clear before we headed to the hospital. And so we waited.....

BINGO was the word I heard when the door opened to our examine room. The doc was so pleased to have an answer to our search of diagnosis. BINGO....its pneumonia. You could have picked me up off the floor as my hubby did back on July 24, 2010. This doctor was happy to write us a prescription and send us on our way with all sorts of instructions. Sloane wasnt his patient so the fact that she has pneumonia after drinking non-thickened liquids for exactly 5 weeks was lost on him. I am sure if our ped was there, she too would have felt our pain.

I can not believe it. I'll assume that Sloane has been silently aspirating for the past 35 days and those tiny aspirations have settled in her lungs to cause pneumonia.  Right now, we are focused on getting Sloane better. I emailed Dr. Rahbar's office and Kara to notify them of our new developments. I am sure there will be a change of plans to come.

I have been worried about this day for over 2 years. Sloane has pneumonia.

Buy A Book

I had to finish up some last minute Christmas shopping today and headed to one of my favorite places.....Barnes and Noble. I grabbed what I needed and entered a rather short check-out line. After the clerk tapped my purchases into the register, he asked me if I would like to buy a book to donate to Hasbro Children's Hospital's playroom. My answer was an immediate yes. I quickly glanced over the bookcase and picked one of my old favorites Charlotte's Web.

The clerk added handed me a book plate to put in it with a to and from line. I filled in Sloane's name on the from line and handed it back to the clerk. I paid for my purchases and walked to the car. Once I was buckled in, I was flooded with emotions for 2 very different yet very similar reasons. 

Years ago before I was married to my hubby, I volunteered with a friend at Hasbro. We worked the playroom for the 5 to 9 year olds every Saturday night 4pm to 9pm. We spent 9 months with the kids. It was a very special time in my life. The experience changed me. I did enjoy playing and visiting with the children, but it was very eye opening to see long-term ill children each week. And heart wrenching when some of those children werent there the next week. I cried for that reason and the reason that Sloane was a patient as Hasbro. I was weepy. I cried the whole ride home. 

All sorts of visions screamed across my mind. Ones from my volunteering years. I thought about the nights I would read to child by their bed. I thought about the nights I would try to get the kids to pick a book from the bins to take back to their rooms by giving all the details of interest I could. I thought about the nights I wished some child would be well enough to be read to.

Visions from Sloane's first days raced around in my head. The reality that I was one of the Hasbro parents. I was teary because there are still children at Hasbro needing a book to read or an ear to listen to them. As I was driving, sniffling, and reminiscing, all the realities came flooding back. I bought a book for a child and in return I got a reality check from myself. 

Our New Normal

Sunday mornings, we all get gussied up (NOT) and head out for breakfast! Sloane has her favorite spot. Seeing as though, we haven't had a working kitchen for months, we all welcome a fancy breakfast.

As we made our way out of the car, I thought WTF I forgot a sippy cup!! And as soon as that thought hit me, another one trailed almost simultaneously behind...Sloane doesn't need a sippy cup! 

She can drink out of the restaurant's kiddie cup without a thickener! There was an entire feeling of calm that came over me. I looked at my hubby and said "ha, I forgot a sippy cup, but we dont need one! Isn't that amazing?" To which he agreed. We both smiled our way thru the walk to the restaurant.

We have not known normal in regards to Sloane's nutrition until now. It is hard to let go of the old and accept our new normal! I am sure I will not let go of my little sips spiel ever! Sloane, now, tells me little sips when I drink. Part of me wishes she was with me on Saturday night because the headache I woke up with reminded me that I clearly didnt use little sips!! LOL

I think it is so funny that exactly what my mommy friends told me is true.

Don't worry about one phrase too much because as soon as you get it down....it changes and a new one begins!

Now, that we have the drinking of liquids in their natural form under control, we are starting to pull the reigns a bit on what Sloane drinks. Her desire for water has diminished the amount of milk she is drinking AND her cold symptoms have caused us to increase the amount of juice she is drinking. The equality among liquids is completely off. We started as parents who worried if our child would ever drink. Then once that happened, we worried about how she drank. Next, we overly concerned ourselves with the amount she drank. And now, we are on to what she is drinking. It never stops!! 

Today was the first day in a few weeks that I designated what would be in the sippy cup. There was no negotiation. Sloane loves to play Monty Hall. Ill try to convince myself with this new normal that I dont need to make a chart on the computer to keep track of how many ounces Sloane is drinking of milk, water or juice each day. I am going to try not to worry about this inequality of liquids phase too much as I am sure we will be on to a new one soon enough. 

On Our Own

Sloane continues to sprint around holding her sippy cup filled with water. Since her first sip on Thanksgiving, she hasn't looked back. Water hasn't lost its luster....its all she wants!

I have been sprinting myself all over the place..but it appears I havent sprinted over to my blog spot. My apologies. Our home renovation has taken on a life of its own and honestly, I can not keep up. I actually am scheduling in ordinary things to get them done in a timely fashion. A trip to target used to be a regular occurrence but lately I have to write it on the calendar so I dont forget. Managing a home remodel is a whole another job!! I had to take off from my regular job of being a mom today to do house things. Luckily ti-ti was coming to bop class anyhow, so it wasnt a huge deal when I slid out to run to Home Depot!! First time ever, I have given up time with Sloane for something else. Not a stellar moment, but I had to check some things off the to-do list.

I am embarrassed to say that there is no sign of Christmas in our home....there are only signs of Dustmas!!! Sloane has seen Christmas in other's homes, but not ours! We do read Christmas books every night if that counts. I feel bad, but right now there isnt much I can do. Maybe by next week, we will have some twinkling lights. Ti-ti did feel badly for Sloane today and bought her a snowman night light for her room. Sloane was very excited to say the least. I keep trying to tell myself that Sloane has no gauge of the aesthetic Christmas spirit so she will not remember that we skipped out on decorating this year. Our house is almost there.....almost finished. But I am sure long after all the saw horses are gone and the banging has stopped, the dust will remain!! I have never seen anything like it!!!

Sloane has been drinking non thickened liquids for 20 days. We had swallowing therapy on Friday with Kara to check in on our progress. I have to say I was very excited to share our new developments with Kara and her colleague. Sloane was very excited to have a snack from Kara. It was all she was talking about for 2 days. Kara has a cabinet of crunchy snacks...when Sloane sees it, its like she has hit the mother load!! LOL She loves Kara's snacks. And so we all piled in the car and made the drive. Not before, I SOS mammie for 3 ice cubes(cant make ice at the house), hard boiled eggs and grapes. It was a rough get up and go morning to say the least. One things was missing and no-one cared at all.......... there were no packets of Simply Thick in our bags!! Only one cup of ice cold water with 3 decorative plastic ice cubes floating in it thanks to nonni!

Now, would be a good time to have side note! The 3 of us would not have been able to survive this renovation without our families. When we are not home during the day, Sloane and I have been living at ti-tis. And when I say living...I mean living. Sloane naps in her bed!! We have been using nonni's house as our playground and her dishwasher daily. We even slept there last week for 2 nights. We crashed in like gang busters!! lol And mammie has been feeding us frequently. Needless to say, we are surviving our remodel because of our families. Thank you to all of you! And there is one more person who has lived through our home remodel other than the 3 of us...it's the machine! She has babysit our daughter in conditions that even we didnt want to play in. The machine is a machine!

When we saw Kara on Friday, we bounced into her office with water and a juice box in hand. Sloane snacked and sipped her way through our appointment. Kara was thrilled to hear that Sloane was handling liquids in their natural form. We talked about the occassional coughing and chugging. Because Sloane is not sick, the coughing does not pose a problem and we can assume that general coughing is a good sign. A sign showing that Sloane's larynx is more in tune with her swallow. The chugging is a mommy problem. I need to continue to remind Sloane to take small sips.

Because Sloane is handling the liquids well, we will not see Kara next month. In fact if there are no problems with Sloane's swallow and if she remains healthy, we wont see Kara until the swallow study on April 30, 2013.  Kara was pleased and sees no reason for us to visit with her if all stays copasetic. Soooo for the next 4+ months, we are on our own! No appointments with Dr. Rahbar and no therapy sessions with Kara. Sloane's laryngeal cleft is all ours. We own it and we need to manage through this winter.

Kara did say that this winter is the true test. Will Sloane remain healthy all winter? Will she hydrate herself enough if she gets sick? Will we need to thicken up her liquids this winter to help her remain healthy? I guess time will tell....

As if I didnt have a full plate, I am going to be starting the story of our journey for Dr. Rahbar's website within the next next. I am very excited to enlighten others parents about Sloane's crash landing into our world.