4 Months And Counting...

We waited 6 months for today's follow-up appointment with Dr. Rahbar and we will wait another 4 months until we see him again. I think everyone in the room was thrilled to hear that news. Sloane's soft bedside scope today wasn't so soft or bedside-ish. It was more like hellish!!! Sloane was so upset that she turned dusky and was left with tiny broken blood vessels around her eyes & cheeks from crying so hard. Sloane has had many of these scopes but today Dr. Rahbar decided to camp out in her airway. He was scoping for what felt like forever...much longer than he ever has. I couldn't watch. My hubby was the restraint person. And mammie never let her eyes wander away; she wasn't missing a thing that happens to her potato puff she said.

The good news is that Dr. Rahbar camped out because he wanted a good look at Sloane's airway. He said she has no scar tissue, her larynx looks great, she continues to show signs of perfect healing from her repair surgery, and her vocal cords look perfect. As if that was questionable today after all the screaming.

It was a good appointment. The plan is to do another swallow study w/in the next 2 months. We have not had one since August 2011 so the doc feels like its time to get some diagnostic information on the aspiration. The mom isnt overly excited because the last swallow study was devastating. We had made so much wonderful progress without any visible signs of aspiration and in ONE single swallow study.....it was all gone!!!! Sloane aspirated everything except solids. We had to take all foods, but solids away from her August until October. I can not bare that again. It would be crushing to take her JU away from her. I explained my concerns to the man in charge, but he said after all this time he doesn't expect her to aspirate her JU on the swallow study and maybe we can test her a bit with the nectar consistency and she will show us that she can safely swallow thinner liquids. He said to call him if it is good news, but not if it is bad! Ha. The doc has a quiet, dry sense of humor. 

So I called Sloane's SLP to have her make an appointment for a MBS (modified barium swallow study) in April or May. More to come on a date.......

We will see Courtney, the SLP, again before the MBS to brush-up on our swallow study taking skills .  I am hoping for some cliff notes. Ha!!!! In the meantime until we see her, we as conscientious parents can thin out Sloane's JU by 10% every 10 days as long as she shows no signs of aspiration. I have no idea what this means. I have deferred to Courtney. Does this mean we move from 4 1/2 oz to 4 3/4 oz to 5 oz of liquid to each packet of honey consistency Simply Thick? More to come on the numbers......

We did ask Dr. Rahbar lots of questions today. There were questions of when, how long, why, what if. And although there were questions,  there were NOT definite answers. Dr. Rahbar, himself, said that a laryngeal cleft is a new territory in medicine and the neuro-discoordination that comes with a cleft, as deep as Sloane's, is  even newer territory (less than 10 years old). They, as medical professionals, do not really know what it is. 

Sooooo, followers there are no answers to your questions of: 

when will she be able to drink regularly, 

when can the g-tube come out, 

how long does it take to get from honey consistency to nectar consistency,  

will she be off the g-tube by kindergarten

There are only educated guesses. Every child is different. He did say that the children who continue to have swallowing difficulties beyond 4 or 5 years old USUALLY have other medical needs as well. We hope that because Sloane's cleft is an isolated birth defect, she is able to progress before school age. 

The easiest way to think about LC and the swallowing disabilities that come with them is with an analogy of speech delays and speech therapy. Children with delayed speech get speech therapy. Some of those children correct their speech in 3 months and are discharged from therapy. Some of those children correct their speech in 12 months and are discharged. And some of those children take years to correct their speech. We do not know how long Sloane will need swallowing therapy & plain old practice time to correct/improve/strengthen her neuro-discoordination in her throat.  SLOW & STEADY!!!!

So here is the plan: continue with monthly swallowing therapy with our SLP, have a MBS by the end of May to get some diagnostic results, see Dr. Rahbar in August for another follow-up appointment 

As for today's visit from a non-medical view. Sloane was VERY active and easily upset this afternoon. We played outside alot and there was ice cream!!!  I was thrilled to have my hubby's helping hands today. As she gets older, each appointment takes longer to recover from. She gets it. I just told someone the other day that she doesn't cry when she 1st arrives at Dr. Rahbar's office. Not the case anymore. The minute she saw a white coat or stethoscope, she started crying, waving her hands and saying no. It is heart-breaking for me. I feel terrible because my daughter is scared, in pain and terrified. The look in her eyes, sound of her cries, desperation in her screams of momma, and appearance of her face burns at me. I know there is a reason for it, but it takes me time for me to let go of it. I will let go of it for the next 4 months...