This week, Peter and I headed back up to Denver. This time to see an ENT and feeding therapist. This is the third ENT appointment in less than a year – all for the same purpose – scheduling the ENT led scope. We have waited and waited and waited to have this procedure done in Colorado Springs, but finally gave up.
Different doctor, different perspective. The doctor in Colorado Springs said both times that Peter did not need to have his tonsils/adenoids removed. The focus was to be examining the vocal cords and voice box, and repairing what could be repaired towards reducing/eliminating his aspirating. Right now Peter can’t drink fluids less than honey consistency.
This new doctor however, feels that the tonsils/adenoids were deceptive because of the narrowness of Peter’s airway, and need to be removed. He felt strongly that with improving his airway, we would improve his sleep apnea. Peter has never been off of oxygen at night. His sleep studies show he stops breathing, and when off oxygen his saturation levels drop too low. He is up a lot during the night, which is not easy on any of us. I know how much better I feel after a solid good night of sleep – I hope the same for Peter.
The outcome of the appointment was a plan to do the ENT scope – ears, nose, throat, remove adenoids, remove tonsils and clean out his little ear canals. On top of the ENT, would be pulmonology. This involves going further down to examine his lungs, do a biopsy, and a CT scan of the lungs too. We know Peter has lung damage in addition to the aspiration and pulmonary hypertension. This will help us get a clearer view of what all is going on, and a more accurate prognosis.
There is an expectation that based on the findings in the throat, Peter will need a second surgery. There is belief that he likely has some structural issues that are contributing to his aspiration, and by repairing these we can improve his swallow. And when I dream big – it means Peter will be able to drink liquids like you and me. I so, so, so hope this for him! To one day be able to drink what is offered at birthday parties, to drink what we have at the dinner table, to go out with friends and enjoy a juice or shake with no worries. May not seem like much, but to me that is a big dream for his future.
A couple of days ago I got a call from the scheduler. Originally planning for surgery in September, I was thrilled when they were able to squeeze us in for August 12th. I am happy and nervous at the same time. I pray that we get good answers, come up with a good plan, and are able to help Peter meet his greatest potential!
After ENT, we had a speedy appointment for feeding therapy. Of course Peter refused to eat for her, but we agreed to send in videos to get a true view of his chew and control of food. However, talking through what Peter is eating now was a WOW moment! He has come so far in the last year. We came up with some ideas and strategies to keep improving his feeding – but the textures and flavors he will take now (not always consistently) made the therapist jump and dance with joy. Peter was less than amused!
Both the ENT and the feeding therapist remarked just how amazing Peter is given all he has gone through in his short life. I am always surprised when we are told in a hospital setting that Peter has a HUGE file, as I just expect them to see a lot of kids like Peter. And, I admit, as a mom it is so reassuring to hear “the experts” remark on his resilience, persistence, great attitude and sheer drive. The text books may say the window will close on Peter, but he will find a door and march right through!
Tuesday is Peter’s speech assessment to get a full and formal diagnosis on his speech disorders…..I am anxious to get this done! His amazing speech pathologist has been working on sounds with him – and now is recording them on his iPad. He loves watching himself with her. The first time he couldn’t focus on what she was saying, he was too busy trying to see himself not he screen. The second time the iPad was in front of him and he was so focused on himself and saying things just right! I have to envy those who love seeing themselves that way – no lack of self-esteem there! And, as if knowing he needed to reassure us that he will continue to persist over his challenges – he has finally been able to say “Bye!” and “Bye, bye!”. For years he bid adieu with a big smile, enthusiastic arm wave, followed by “..die! …Die!….DIE!” Not everyone understood that was his version of wishing them good-bye, as perplexed looks gave away their confusion at what we could possibly be teaching him!
So there you go – just a quick update on the Peter bear! More to come over the next couple of weeks as we knock some things off his “must do” list before he starts 1st Grade!
And, this would not be a complete post if I did not remind everyone that the Buddy Walk is in 3 weeks. On August 23rd, Team Peter Bear will be walking for the 8th year in honor of our little man. We hope you will join us as a walker, virtual walker, and/or donor. For more information, just visit our TEAM PETER BEAR page.