Six weeks of emotional kaboom!

July and August have been emotionally charged months. Probably more for me than anyone else. I had a lot of emotional investment in a few appointments we had – and as a result, my emotions to the results were even stronger. The first was in early July where I was told Peter probably has speech apraxia. It was frustrating since I had suggested it a year earlier, and they were the same folks that told me to keep doing what we were doing because Peter just needed time. This time the panic of “the window is closing” heightened my emotions to the year lost. I have since walked away (a bit) from that ledge, being reminded that Peter’s picture is next to “perseverance” in the dictionary. My next emotionally charged appointment was the actual speech assessment. We understood that this assessment was necessary to ensure we had the correct diagnosis on Peter, and therefore treating his speech challenges the correct way.  I got there early – too early – but Peter was patient as we waited for our appointment. He was not too excited to have to sit in one single spot for too long, but did follow instruction and completed the assessment. My tummy was churning as I watched the therapist feverishly take notes on the sounds he made instead of clearly articulating a word. Finally we were done, and Peter was thrilled to go back to playing as he wanted – without direction! The conclusion – Peter does not have enough speech to diagnose what one or more disorders he has at this point. Peter smiled happily as we left, but I felt someone stunned and horribly disappointed. We had waited over a month for this appointment. He is 7 years old, and speaks in single words that are clear to a few of us. He has some memorized phrases – but even those are not clear to everyone as they stare blankly. And there are times I have no clue what he is telling me because it is a sound out of a particular context, and I am stumped. Clearly something is wrong! I believe Peter is capable of much more than what he has achieved – and he has the attitude and perseverance necessary to persist until he succeeds. Yet, here we were with another extremely frustrating situation. On one hand we are told we need a diagnosis to ensure correct treatment, and on the flip side he doesn’t have enough language to diagnose something. Feels like a Catch 22, but at the end of the frustrating situation is Peter, still unable to communicate. The fact that he doesn’t get horribly frustrated is truly miraculous.  This was the second appointment that I had so much emotion build up for, to just walk away with a contradictory feeling of emptiness and full of frustration.
When in doubt - dance! My kids and their cousins found some pianos covered up in a barn. While they all wanted to clunk out some tunes, Peter decided to just enjoy it....see him?! yep....dancing on the far left!

When in doubt – dance! My kids and their cousins found some pianos covered up in a barn. While they all wanted to clunk out some tunes, Peter decided to just enjoy it….see him?! yep….dancing on the far left!

At the suggestion of a friend, we wanted to look into metabolic issues that can contribute to neurological disorders, including apraxia. So armed with this information and several medical articles, I requested a test be done on Peter so we would have a baseline before introducing anything new. We know that after years of surviving on turkey hot dogs and yogurt, he is hardly the picture of dietary health. We endured way too many visits in the hospital by dietitians who treated us like we were the worse parents in the world for not giving Peter a balanced diet. Only a parent who has desperately tried to get there child to eat, understands just how painful those conversations are over and over and over again. You are already struggling with the challenges, and it is like having your heart pushed into the dirt and stomped on. I am grateful for a friend who once told me “…sometimes any calorie is better than no calorie….”. I have held on to that for years as a source of comfort. Denying Peter the foods he would tolerate – especially during chemo – with the purpose of forcing him to eat something else would have been futile. He would just have gone hungry, and made further feeding any harder. I know that because we already tried that. That aside, we know Peter is probably metabolically out of whack despite the daily kids vitamin. Several phone calls later – no one would write up the order to have this test done. Why? Because the only way to treat Peter was through speech therapy.  By this point I think my heart was in my throat, and all i wanted to do was let out giant tears and a primal scream that would have been heard in China! Fortunately, my last physician to talk to was the answer to my prayers. Fearing my last attempt would be futile, I was surprised that she completely agreed, and is not only helping get the testing done but is setting us up with a nutritionist who specializes in childhood cancer patients. This time the tears did just pop out and stream down my cheeks as I thanked her over and over and over again for being the angel I so desperately needed at that point. So later this month we have the appointment, and I am hoping all goes well and we can move forward with exploring options to supplement therapy and break down the walls that hold Peter back from sharing his deepest thoughts with us.
"Woo dude! Did he really toss this ball at me?!"......Peter was tossed a ball during a ball game before surgery.

“Woo dude! Did he really toss this ball at me?!”……Peter was tossed a ball during a ball game before surgery.

So last but not least at this point, was Peter’s scope. Another source of frustration as we have been trying for a year to get this coordinated. For one reason or another, it just didn’t come together. So we opted to have the procedure done in Denver. This led to more appointments, and the decision that Peter needed to have his tonsils and adenoids out. This was 180 degrees from our starting point a year ago. So, we moved forward. This last Tuesday, Peter and I headed up to Denver to have the procedure done. The tonsils and adenoids came out with no problem – but recovery has been hard. He came out of surgery like a champ and ready to run around the hospital. The RN did warn me that it gets worse before it gets better – I underestimated what she was telling me. Peter is alternating Tylenol and Motrin every 3 hours and spends most nights crying unconsolably. He doesn’t want to drink or eat, and has a low grade fever that comes and goes – no doubt because of the Tylenol and Motrin. And his breath – on my goodness – I didn’t realize just how bad it smells recovering from T&A!  My emotional investment in this appointment was the result of the scope. For the last 12 months I held onto what we were told in his first ENT appointment – that his husky voice was due to paralyzed vocal cord, and he had a cleft in his voice box – both of which contributed to his aspirating. The plan was that following this procedure we would have the cleft repaired, and I believed we would finally overcome the obstacle of aspiration. Sigh. I was wrong. The results of the scope showed that there was no paralysis or cleft…..meaning, there is no anatomical reason he is aspirating, so to assume this is neurological. In addition, there is damage and irritation from his throat all the way down to the depths of his little lungs. The damage/irritation was far more than expected. We are waiting for the results of the analysis on his lungs. But, based on what both pulmonology and ENT saw, they believed Peter is still aspirating (maybe on his own saliva) and having reflux.  In addition to the damage/irritation, both specialties commented on how asymptomatic Peter is given his issues. Clinically, on the outside, he looks like the picture of health. On the inside, his little 7 year old body has way too much damage. They both said that it was truly amazing that Peter doesn’t have recurrent ear infections, and spend most of the winter in the hospital with pneumonia. But, what we are seeing is unexplainable at many levels – and therefore possibly neurological. Sigh! They asked if we had an MRI done, which we have not. But to be honest, I have no clue what you would look for in an MRI that would in any way change what we are doing today – speech therapy for apraxia, and thickening all his fluids to mitigate aspiration.
Waiting for his date in the OR......he is so comfortable in a medical setting, but had no clue just how much it would hurt at the end.

Waiting for his date in the OR……he is so comfortable in a medical setting, but had no clue just how much it would hurt at the end.

Post surgery - he was hard to wake up, but once he was up, he was ready to stay up....took some coaxing and a lot of snuggling to get him back to sleep.

Post surgery – he was hard to wake up, but once he was up, he was ready to stay up….took some coaxing and a lot of snuggling to get him back to sleep.

Peter dressed himself (I promise i don't do shirts backwards), grabbed the nurse's flashlight, and was looking for a way out!

Peter dressed himself (I promise i don’t do shirts backwards), grabbed the nurse’s flashlight, and was looking for a way out!

I left Denver feeling like I had more data on Peter, but less answers. As horrible as it may sound, I really hoped he had a cleft in his voice box. Something visible, something repairable, something that could be fixed to take one bad thing off his long list of challenges. The next step now is to put Peter on steroids to improve the health of his throat and lungs, put him on preventative reflux medication, and let him heal from the scope. The results of the study on his lungs may change this, but we will cross that bridge when we get there. We are being scheduled for another swallow study and sleep study in about 3 months. This will allow the specialists to reassess Peter and determine if anything has improved as a result of clearer airways. If there is no significant change, then Peter will likely get put into an interdisciplinary program with ENT, Pulmonology and GI. While my dream is that Peter’s health improves, I’ll settle for a group of doctors actually treating Peter together. I know I have said it before, but it is so hard when you have so many experts providing direction on what to do with Peter. He is still just one little boy. So having several specialists see Peter as a single child, and come together to determine treatment, is really a relief. How awesome would it be if every person invested in Peter’s health and development could sit in a room together and help come up with a single plan we can all march to!
Since he came into the world - Peter has known how to convey so much in a  gaze.....

Since he came into the world – Peter has known how to convey so much in a gaze…..

The last six weeks or so have just been emotionally draining, and then school came upon us. Another reminder of how much more we need to work with Peter to get him remotely in line with his peers. Someone once told me to “never give up” on Peter. I was hurt by that …..as if giving up were ever really an option. Sometimes things are discouraging, but a single second with Peter takes my mind off everything else. I rejoice those moments where I can just gaze at Peter for being Peter…..not Peter in a world that judges, ranks, and categorizes him. It is those moments of gazing that are beautiful! I will not lie. Sometimes they are interrupted by a screaming Gretchen, a dispute between the boys, a pounding at the front door, an incessant “ping, ping, ping” on my phone or the timer of dinner. Reality! However, I find my greatest joy comes when I can push those distractions away for just a few seconds and scoop Peter up in my arms. I whisper to him “I love you, Peter”, and he replies with “I you”. The hand on the cheek, the arms squeezing around my neck or the simple gaze back at me makes those two words priceless! I know how hard he has worked to get those two words out – two simple words that fill me up and remind my why never giving up is the best choice I ever made.
xoxo
Catherine
ps. CSDSA 2014 Buddy Walk is this next Saturday, August 23rd. We invite you all to join our team – as a walker, virtual walker, and/or donor. We believe firmly in the CSDSA and truly appreciate every dollar donated to this organization that does so much for those in our community and Southern Colorado. Hope to see you there walking on TEAM PETER BEAR! (just click on the words to get to our team page)
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…and we have a date!

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.

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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.

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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!

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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.

xoxo

Catherine