We Know It

When a child aspirates, you know it! This morning at Sloane's favorite breakfast spot, there was no mistaking that she had aspirated sips of her morning juice. Did she aspirate because she cant handle her 7 oz. to one packet consistency safely? I don't think so. I think she aspirated either because the juice was thinner than 7 ounces (the blind eye measuring may have been off) or she took too big of a sip (the diameter of the straw was wider than she is used to so the intake volume may have been too much for her).

Whatever the reason, she did aspirate. There was the look of panic in her eyes because she is trying to breathe, there was the coughing and gasping, her eyes turned red and then the flushiness spread to her face. We used to panic but now the cup is tugged away, there is an "arms up" command, and then a bang on the back. Usually in my head I am thinking, WTF, I just let some foreign junk enter into her lungs, sit there and ?????. In the past, I would go "off the reservation" with these thoughts meaning they would become a bit irrational in regards to the jump from one aspiration to pneumonia. These days, I am a bit more rational about one aspiration. When our child aspirates, we know it!!

We are starting the renovation to our home soon. We are both going into the 8 to 10 weeks of complete uprooting and destruction with optimistic approaches. I think the circle of trust thinks we are nuts. The way I see it is if my hubby and I can survive a crash c-section, our infant turning dusky on day 3 of life, 7 weeks in the NICU, surgery being done on our 1 month old, feeding our child through a feeding tube and living in complete emotional and physical survival mode for the first 6 months of Sloane's life then shame on us if we cant survive an 8 to 10 week renovation! Our experience with Sloane and her laryngeal cleft has truly changed our outlook on all aspects of life and we know it. 

16 years

Today was the 16th anniversary of my mother's passing. I can not explain in words what that feels like. 16 years without a mother is a long time. It actually is a lifetime in my eyes and heart.

Sloane has been asking me and others "where is your momma?" lately. My response is that my momma and her Grammie Jackie is in heaven with the angels. As I say the words to my 2 year old, I realize we both have yet another thing in common.....neither of us understands what that means or why that is. Maybe in another 16 years we both will.

Kicks in the ???

We have been keeping calm and carrying on. I emailed the medical team about the Simply Thick concerns. They all eased our concerns noting that the issues were in fact with preemie babies and full terms under 3 months old. We lucked out that our new SLP, Cara, was on the panel for Children's that addressed the Simply Thick FDA concerns. She will be calling us soon to discuss other thickener options as both of us are apprehensive to continue using Simply Thick long-term. I would have to say that this is just another kick, in the you know what, to speed up the thinning out schedule.

We officially started 7 oz. to one packet today! Right on schedule with Cara's new instructions. Sloane drank about 16 ounces throughout the day without a gurgle to be heard. We will use 7 ounces for the next 2 weeks.

 My hubby, the adventurous one, gave Sloane a milk box this weekend without any thickener added to it. Now, Sloane was beyond thrilled. She has sipped these milk boxes before for a sip here or there.  But many times, Simply Thick was added when she wasnt looking. On Saturday, daddy handed her the box to have on her highchair tray. Sloane was in her glory!! He monitored every sip to be sure each one was small..... to Sloane's dismay. The entire box was gone before lunchtime was over without a cough, gurgle or sound. I will even admit that I was in shock.

Now, of course, chocolate milk is more viscous. When I thicken it, I always use more ounces of liquid than I would for any other liquid. For example right now, we are on 7 ounces to one packet. If I was thickening milk, I would do 9 ounces to one packet. Watching Sloane drink the milk box this weekend was another kick, in the you know what, to speed up the thinning out schedule.

Keep Calm & Carry On

Yesterday I blogged about the amount that Sloane drank and how you never know what you are going to get.....well, this what you get!

You get 2 parents preforming 007 work at 10:30pm because their sound asleep child has peed the crib. She is snoring her 1/2 snore in a puddle of pee-pee. This has never happened to our knowledge. We decided to change her and her bed without her knowing. I had my doubts, but my hubby was sure we could get it done. And we did! I changed Sloane on our bed in ever so dim lighting and my hubby took care of the crib. Sloane did open her eyes once to tell me she wanted the baby book. Sloane is addicted to Princess Baby by Karen Katz. We read at wake-up time, at nap time and at night night time. She is now reciting the story with me. Anyhow, she wanted to be sure that we didnt miss a read last night mid diaper change. lol!! I obvisously opted not to read the story and hubby transferred back to her dry crib. That folks is what you get when our child drinks all day!!

This afternoon, my hubby and I were alerted to a very concerning article on Simply Thick on Bloomberg today by our dear friends. It stopped us in our tracks and has us in investigating mode. I have already emailed all the members of Sloane's medical team. I posted on 4/17 about my concerns on Simply Thick and its effects with daily use. These concerns are now heightened to say the least. My hubby and I will wait to hear back from our team and move on from there.

There are parts of these articles that make me want to break out in a full blown red alert craze and other parts that give me some comfort. The comfort comes from the facts that:

• Sloane was not a preemie, 
• she has been drinking Simply Thick for a long enough time that I THINK we would know if she was having short term adverse effects, 
• and ALL of Sloane's medical team has known about the significance of Simply Thick in Sloane's daily liquid intake. 

http://mobile.bloomberg.com/news/2012-09-18/baby-deaths-linked-to-infant-formula-additive-fda-says.html

http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm256250.htm

Connecting the Dots

Today there was the 4 oz of flavored water during the morning, then there was the 6 oz of juice at lunch, and then there was the 6 oz of flavored water this afternoon topped off with 2 more oz. at dinner. Some days, you just know what you are going to get!

What made today extra super duper is that Sloane asked for a drink!!!  Now, I am sure that doesn't seem that special but in our world it is. Laryngeal Cleft kids have to learn to make drinking part of their normal life which is a very long process. It starts with getting the child to like drinking, then to pushing them to increasing the volume, onto helping them to make the connection between being thirsty and quenching that thirst with a drink, and lastly getting your child to request a drink because drinking has become part of their daily routine. All of this happens while the liquid is slowly thinned out. It is a process......a process that is slow and steady. There are lots of dots to connect.

Just like the post: Sip, Wait, & See 2/29, there are days when something happens that makes all the Sipping, Waiting and Seeing worth all the wondering time. Today was one of those days. Sloane said, "momma, I want juice." It took me a second or 2 understand or rather process what she said. Basically, for me, that was like hearing my 2 year old recite the pledge of allegiance. To have Sloane ask for a drink is quite an accomplishment in our home. There were times when we would jump thru hoops just to get her to take one sip and usually that sip was encouraged strongly. Sloane wanted a drink yesterday and she proceeded to drink it of her own will. 

INCREDIBLE!! 

 Dr. Rahbar's office asked me today to write a rough draft about Sloane's journey for them this week. Amy asked me to include a timeline of events. I have started to give my approach some thought with the voices in my head. So much has happened in the past 26 months. The question becomes how to tell the story.  It seems I, too, like my daughter will need to connect the dots. 

Rattling Away

If someone out there can teach my 2 year old to walk and not run that would be great. This morning there was a big boo boo. I was walking down the hallway to answer the phone, Sloane was sprinting on my heels and down she went on her forehead with no bracing of the fall. How she didnt break the skin open, I have no idea??? She slammed so hard that she has a blood blister indentation of the bevel in my hardwood falls down her forehead on top of the very large black and blue egg. I must say WALKING FEET 17,000 times a day!! Anyhow, I took her to the ped and she is fine. She doesn't and won't look fine for a few days but no head trauma! Thank You Above!!!

Back to the WONDERFUL phone call I got yesterday from Dr. Rahbar's staff.......

I think I chewed Amy's ear off. I was rattling off information non-stop. I am very passionate about Sloane's laryngeal cleft. We spent almost 30 minutes talking about being the parent of a child with a laryngeal cleft and all that comes with it. It was refreshing!! Finally, someone understood some of the things I have struggled with because a LC is so rare. There truly is very limited information out there. 

 I was over the moon that while Amy was researching for Dr. Rahbar she found this blog. I mean I know people are reading us. We have had almost 4,600 hits in 8 months from all over the world. I have had moms from all parts of the US send me emails and share their stories, but I must admit that it was pretty cool that a medical professional found A Sip Of Heaven. Thank God I have written all good things about Dr. Rahbar.... the man, the legend!! LOL  My hubby reeled me in last night, when I was doing somersaults of excitement on the phone with him, that perhaps the good old doc maybe wasnt thrilled that I posted his picture on the blog?? Oh dear, I hope not!!

So Amy is creating an online parental information page on the teeny tiny LC.
HIP HIP HOORAY!! Imagine if I had had that information from the beginning. I may have bypassed the dark and disconnected days 2 years ago. Dr. Rahbar and his staff are interested in our journey or rather Sloane's story. They would like to share it on the page! Go For it!! Amy wanted to know what kinds of information I as a parent of a child with a laryngeal cleft would have found helpful back at the beginning and now. I went on and on but not without "I am sorry for rattling....I just think this is the best idea" Amy also wanted to know if I thought a support group was a good idea??? Do I ever!! Yes, sign me up.

And so we chatted and chatted...and then something validating happened. Amy said that some other parents too thought the feeding tube's presence in a Laryngeal Cleft child's life is one of significance. Other parents, too, had said that the feeding tube was, for lack of a better term, a jedi mind trick!! Thank You...I am not crazy!!! That fucking thing was constant reminder that my child had a medical abnormality. At some point, the feeding tube starts superseding the birth defect and then everything is out of balance. Even yesterday at swallowing therapy when Cara found out that Sloane's mickey button had pulled and she asked me with complete exhilaration what that was like. I couldnt really answer her....I am still processing all that has happened. I am not stuck....I just need more time to work through it all.

I shared a couple of my cooky invention ideas with Amy...to which she didnt think were so cooky. I like to dream up great ideas in all free time  (Post: Mother's Den) and do nothing with them....makes my hubby very happy!! HA!! I am looking forward to Amy calling me again and chatting with her at our next appointment with Dr. Rahbar. She, on the other hand, may wish she never stumbled across this blog and dialed up Sloane's mom because, as per usual, I have A LOT to say.....

Fast Forward

If anyone ever saw how my house looked on the morning we had an appointment in Boston, they would cringe!! This morning was no different, in fact it might have been worse. Our appointment at swallowing therapy was at the perfect time. Not rush hour, not afternoon commute. A perfect mid morning time so I wasnt worried about a morning rush out the door.

Sloane is ALWAYS up by 6:30 so that would give us 2 hours before we needed to leave the house. Now this morning when I opened my eyes at 7:45, I almost shit a brick!! That was one hour to shower & dress, wake, feed & freshen up Sloane and pack all the necessary foods for today's appointment. Not much time at all, but we got it done.... leaving behind a DISASTER! Small piles of mess were scattered around the house everywhere. Sloane and I were like whirlwinds twirling around and as a special treat: Sloane cooked whoopie pies with her Auntie Sue yesterday. She loved it so much that this morning she cooked or rather powerfully stirred her milk and cheerios. "I cuukin" "I cuukin" she was squealing as the milk was dripping off the walls and the cheerios were flying through the air! It was adorable and irritating all in one stir.

To my hubby, as you read this post in some shit-hole hotel or airport, be so happy you weren't home today. The mess we left behind would have made you shudder!! We miss you! xo

Sloane's appointment with Cara went very well! She performed all her tricks. Lots of chewing, swallowing, sipping and chatting. I shared many details about Sloane's progress including her "special treat" of sipping water in its natural form from a water bottle cap. Sloane loves this! It is a special treat that she will take part in for hours if she could. Cara was interested to try it and Sloane was beyond excited. She kept saying "for me?". Sloane proceeded to drink about 1/4 of the bottle in small capfuls without a cough or a gurgle. Cara was thrilled to see this so she decided to up the anti some.

We had been increasing Sloane's liquid intake by a 1/2 ounce every 2 weeks. After today's performance, I will be increasing Sloane's liquid intake by 1 ounce every 2 weeks.  Cara THINKS Sloane can handle a larger increase of liquid more frequently. Mammie was thrilled!! She was just about spitting nickels!! To be sure that I follow the new protocol, Cara typed it up and gave it to me. lol! I asked her not to give it mammie because I was afraid she would make copies and pass them out to all the circle of trust players to ensure my fast forward progress....eek!!

• We did talk about my opinion that Sloane can tolerate thinner liquids in very small sips. It becomes a sticky situation when she takes in big sips or gulps. That is when she aspirates and has trouble processing the swallow. 
• We chatted about a 2nd surgery and why that happens. Some children get stuck at a certain consistency and cant get past it. That is when Dr. Rahbar goes back in surgically to tweak his incision some. 
• We touched upon the scary upcoming cold/flu season. Cara was able to clarify it a bit for me. The thought is that cold/flu season will always be more heightened for Sloane. Because her lungs are compromised from the aspirations, any cold or respiratory illness would be watched carefully. For some children, they thicken up their liquids so there is no chance of aspirations during the entire season. For other children, they sit back and wait for them to get sick and then thicken up the liquids. Other children, simply continue along their thinning out protocol. 
• We talked about what the magic number is in regards to thinning out liquids. I will take Sloane up to 8 ounces of liquid to one packet of Simply Thick and then I will start to wean away the Simply Thick from the liquid. 

It was a really good visit. I am looking forward to our new thinning out schedule and seeing Cara again next month on October 12th to discuss our progress. 

When we got home, the cherry on top of our great day happened. Dr. Rahbar's office called. I immediately assumed that they were calling to change our appointment, but boy was I wrong. They found this blog while researching information for Laryngeal Clefts. Dr. Rahbar and his staff are in the process of creating an informational online site for parents.  They want Sloane's journey to be part of the new web-site they are designing. Chatting with Amy on his staff for 30 minutes today was one of the most exciting things that has happened in my world in the last 2 years!

To be continued...............

Run, Mommy, Run

So I am training for a 5K road race. It is in honor of a dear friend that we lost far to early to lung cancer. His story affected my heart, not only because he was a great guy, but because it was a story I knew all so well. A young, healthy, beautiful non-smoker taken over by lung cancer. My mother, like Steve, was a non-smoker taken away by lung cancer in less than 18 months.  They were also similar in their ages. Steven was 52. I would always say "but he is so young" as I followed the details of his tragic journey. My mom was even younger than him when she passed on. She was 50. I do not think the shock of my mother's age at her death really ever hit me. She was my mother so that was devastating enough. I never really saw her as young as she was because she was mother. By nature, your mother is always older in your thought process than she is in age. The reality, for the general public, must have been the same as I was about my friend Steve. She is only 50. But as we all know, cancer knows no age, color, race or religion. It has no boundaries.

Steve's honorary road race is next month and I have been jogging along. I fit in my exercise whenever I can. There is never a schedule to it although I wish there was. I am working on one now. My hubby and I only live near one of our circle of trust players. The rest of the players all live a distance away that makes impromptu "can you watch Sloane for an hour?" runs not ideal. I do dream some days about what it would be like if we were closer to the majority. Would I be ready for the cover of Fitness magazine?? LOL!! I am pretty sure not!

Training for this 5K should be a piece of cake for me. 3 years ago, my hubby and I would run 10 mile road races. We took up running as a hobby while we were going through our fertility treatments so I had something else to obsess about other than my failing ovaries. Now, it has been 3 years since I was considered a runner but I thought since I have been jogging here and there for months that this training would be easier than it is. It isnt that easy at all!!

What started happening this week may just help my training though. As we are out for our morning walk/runs, Sloane USUALLY chomps away on a snack and yells "hellos" to all the neighbors. This week, however, she has started some coaching of her own. When I slow my run to a walk to catch my breath or just regroup, Sloane turns around in the jogging stroller, looks up at me with her beautiful eyes and says "run, mommy, run" over and over again until I pick up my pace. The shear embarrassment of my neighbors hearing Sloane's "run, mommy, run" echoing through our neighborhood is enough to make me kick up a notch. She is not happy when we are at a walking pace anymore, Sloane only wants to race

What's the Magic Number??

Sloane has swallowing therapy on Thursday. It will be our first appointment since June. We will be meeting with a new SLP so it might not be as productive as it has been in the past. Sloane had built a relationship with Courtney, our old SLP, and would usually perform for her friend. As for Thursday, Sloane did meet Cara, our new SLP, last month during our appointment with Dr. Rahbar but has no prior experience with her.

Sloane is safely drinking 5 1/2 oz. of liquid to one packet of nectar Simply Thick today. The goal of Thursday's appointment on my end will for Sloane to simply drink in front of Cara. I see no signs of aspirations. There are some coughs but in my mommy opinion they are because Sloane is swallowing too much liquid at once. There are times when she could use some management with the amount of liquid she sucks thru the straw in one sip. She can be a piggly wiggly!

On Thursday, I have to chat with Cara about when all the thinning is done. I am not sure of how many ounces of liquid added to the Simply Thick make the liquid natural consistency. What is the point? Is it 8 ounces to one packet or more?? What's the magic number? I am asked that question a lot and I feel foolish to not know the answer.

My hope is that we will see Cara on Thursday for our September appointment and then one more time in mid-October. I would like to have 2 appointments with her before our follow-up with Dr. Rahbar on October 30th. On October 30th, he/we will evaluate her progress and decide if it is time to have a swallow study to get more diagnostic proof of Sloane's swallowing capabilities. That is not as scary to me as the other discussion we may have. It is the one that will revolve around whether or not, Dr. Rahbar will perform surgery on Sloane's cleft for a 2nd time in the near future to help her improve her swallow. That discussion is one that I spend not time thinking about at this point...I can not bare it.

I don't think I mentioned this yet but Dance Class started up again AND, as if that is not fun enough, my niece S is taking it with Sloane. YUMMY.......is all I have to say. My SIL and I laugh for the entire 45 minutes. The girls are a complete comedy show!! Today, the "aunties" and G came to watch. S2 could not contain themselves. It was a freaking screaming, jumping, hand waving, twirling contest!!! Moments like this are once in a lifetime.

That Mom

I realized the other day that I have turned into That Mom....the one I always wondered about.

I am That Mom who can't find the time to return a phone call in due time.        
I am That Mom who has phone calls with a toddler squawking in the background.
I am That Mom who is home all day, yet can't seem to get everything done in time.
I am That Mom whose day revolves someone else's schedule.
I am That Mom who can't keep track of her cell phone because her 2 year old had it last.
I am That Mom who is clueless about her working friends' schedules.
I am That Mom who texts and emails more than talks.
I am That Mom who writes herself reminder notes for things that were everyday occurrences 2 years ago.
I am That Mom who frequently reminds herself about things she has to chat about with her circle of trust people so they know she still can balance it all.
I am That Mom who will rearrange her unnecessary errands to let her toddler have more play time. 
I am That Mom who tries not to bother her working friends too much so they don't get annoyed with her because she doesn't work.
I am That Mom who would love to stay snuggled with her child all day reading books and singing songs. 
I am That Mom whose last thoughts most days are about all the fabulous things her child did that day. 
I am That Mom who loves to tell others how amazing her daughter is. 

I have turned into That Mom. I used to be The Other Girl (post: 2/13/12) and now I am That Mom.  

Bartending

Some days I feel like bartender. Mixing, Shaking, Pouring, and Serving. Sloane is consistently drinking which is AMAZING! There is chocolate milk in the morning, flavored water all day and the occasional treat of juice if we are out to dinner. I think I have a good handle on her cups. Basically, they are everywhere! There is a constant rotation going on in my diaper bag and my refrigerator.

Sloane is happy with one of her cups until she sees a plastic to-go ice coffee cup in my hand. Then its game over. Sloane wants that cup. Thankfully, she has been upgraded to a straw and can safely handle drinking her thickened liquid thru a straw. So the battle isnt one worth fighting.

This morning, her chocolate milk was transferred from her cup to a to-go plastic cup and she sipped away like a big girl as I nursed my iced latte. She was so proud of herself and I was on pins and needles waiting for the cap to go flying and chocolate milk to be long gone. Surprisingly, she flung and swung her cup around like it was a yo-yo and not a drop dripped away!

The cup to cup transfer can go off without a hitch at times. There is always a "I want that" with a finger point and a tone of urgency when Sloane sees my to-go cup. And with a swift move, her drink is poured from her cup to big girl to-go cup.

What doesn't go off without a hitch is when we are out at a restaurant that has kiddie cups. Sloane's eyes become as wide as golf balls and it is down hill from there. She sees the cup and she wants the cup. End of story.

Reasoning with Sloane as to how I have to pour the oz. of the juice we have ordered into her empty sippy cup to mix it with her packet of Simply Thick and then shake it before pouring it into the restaurant kiddie cup is USELESS. I have tried phrases like:
one minute
watch mommy do
turn up your listening ears
1 pour, 2 mix, 3 shake and done with a calm pleasant whisper.

It doesnt matter. The entire time I am doing my impersonation of Tom Cruise in the movie Cocktail, she is:
I want it,
me do,
momma i do,
no, no no with a certain enthusiasm that can be heard 2 tables away. She sees the cup and it is tunnel vision until the cup hits her hands.

The 2 minute process feels like 10. The table is covered with empty glasses and cups, wrappers and usually a spill of JU. The waitstaff usually walks by and extra time to see what is occurring. There are nights when it is a bit of scene. Last night is a perfect example, I had to stand up to do my pouring. The song Kokomo should be playing in the background while these antics are occurring. It would have been so appropriate! To watch Sloane drink her entire cup of juice makes all of my bartending stints feel like the best job in the world!