Another VFSS

Braden had a VFSS (swallow study) done again yesterday...about 6 months since the last one and YAH...he shows quite a bit of improvement. The pathologist who did his study yesterday is very good and we've been really happy with her recommendations so far. Now, with agreement from the doc. she says to go ahead and slowly reintroduce regular liquids. We're on a slow and steady schedule that should wean him off the thickened liquids over a month or two IF he shows no signs of fever, chronic cough or too much choking and sputtering when drinking. He has to start with juice boxes because they have a skinny, little straw that should keep him drinking at a slower pace and we can regulate how quickly he drinks by pinching the straw if he's going to fast. It's like we still have to teach him how to drink. He has to drink slowly and with small sips until he is able to control it himself (if that makes sense).





Before he is completely weaned from thickened liquid and drinking any old way and any old stuff, he has to go back and have another swallow study to give him a clean bill of health. They are hoping to do this all over the next eight weeks. Of course, we have been disappointed before with how he handles changes in his drinking so we won't hold our breaths for big leaps and bounds but in the meantime we are very thankful that he does seem to be heading down the right road at the moment.

Braden's Scope (surgery)

Braden and Mom at Children's Hospital. Nice gown Braden!

We did go in for Braden's surgery on May 24 ( I apologize for this taking a while to post but our hard drive had some problems that needed to be fixed). The results were encouraging in the fact that everything that they saw looked healthy and normal. No laryngeal cleft, no holes in his esophogus to be found. While these are good results on the one hand it still leaves us wondering why his swallowing has not improved and for that matter, why he has "dysphagia" at all. They doctors at Children's Hospital were wonderful and encouraging and again told us that it will be a matter of time and that it is still considered a developmental problem which means we should see him learn or develop his swallowing skills eventually. We are not sure why he does not fit into the normal development timeframe for this type of condition except that because he started small (and early) and now he is off the charts for his growth...his swallowing development probably couldn't keep up with his growth. Hmmm, doesn't sound real scientific but we'll go with it for now :)

Braden is healthy, happy and a vibrant two-year old (if you know what I mean) and keeps us on the go most of the time. So we are thankful for this as we know that we are truly blessed with his health and with the care we recieve on a regular basis from doctors and specialists and hospitals. It's all at our fingertips, unlike for so many in the world around us. God is good!!

Spring 2007

Well, here it is...six months later. We had another follow-up swallow study done last week at Children's Hospital. We had been hoping for as good news as we had recieved last fall but we're a little dissapointed in his test results this time around. It seemed in the fall as though he was begining to make improvement and that it was the doctor's hope that he would continue on that path over the last six months so that he would be able to go off of the thickeners we use with his drinks.

This time around it seemed to be that he has regressed a little or stayed the same. The swallow study showed a consistent penetration of all the (single thick) liquids he was drinking and definate aspiration of regular liquids.

The recommendation now from the doctor in the pulmonary clinic is that we take Braden to see the otolaringologist (ear-nose-throat) doctor at Children's. We have a clinic consultation booked for May 8 and a surgery slot booked for May 24. What they want to do is (under general anesthetic) put a rigid scope down Braden's throat that has a camera so that they can have a close look at his epiglottis, larynx, voice box and such. The pathologist that did Braden's last swallow study had a strong inclination that Braden may have a cleft in his larynx. It would be consistent to believe this with what she saw on his last swallow study. I believe it is called a laryngeal cleft. We don't know much about it...I have read a little online but until we visit with the otolaringologist we don't have much information. All we know is that if the find what they suspect to find at this point then they can do surgery and repair it.

The doctor's have told us that if it was a developmental swallowing problem (which we've been thinking it was) they really would expect to see a lot more improvement by this stage (age 2 on April 20) and also an improvement with his reflux...which is still being treated rather agressively with med's.

We are still on the path of diagnosis it seems and continue to find comfort in the fact that Braden and we are all in the Lord's hands and that He directs our paths. I will try to continue with the updates in the next couple of months.