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...............