More and more normal

This weekend we had friends come in from out of town… what a fun weekend for Isaac! Just to insure absolute kid pandemonium we invited a few more friends over for a pizza party on Saturday night. Shortly after his friends arrived on Saturday our superhero started acting funny, and sure enough – he had a temperature 🙁 In true Isaac fashion he got some Tylenol and sprang to life, thoroughly enjoying the rest of the night.
As the weekend progressed he was up and down, fever/no fever, good/not good….. oh the roller coaster. We went and visited his pediatrician extraordinaire today, she diagnosed him with a normal kid sick – seriously! Do you know how exciting it is to have your kid diagnosed “normal”, even if just for a few minutes??
We were able to get to Vacation Bible School this evening – we are so glad we did! We spent the trip there singing and dancing along to the Fresh Beat Band, and I realized again that my child who didn’t talk a year ago is now singing and dancing in the car with me 🙂
VBS was a blast, he warmed up fast – he loved the games and skits and the singing and dancing at the end of the night. Did I mention this kid LOVES to dance?? We are lucky enough to attend a church with a live band – heaven for my superman! It is really hard not to cry as I watch him sing and dance, I haven’t figured out why this very small step for him hits me so hard every time, but it does. I think it’s the combination of the sounds that we didn’t hear for so very long and the utter joy this child feels over and over again. No matter what happens, he is joyful.
We are excited to see what else VBS brings us this week. Isaac’s girlfriend has been admitted to the PICU in order to figure out what in the world is going on with her breathing, and an EA friend named Crew will be getting his trach this week – please keep these sweet kiddos in your thoughts!

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the roller coaster….

We are really only a few weeks into summer, and it has already been filled with ups and downs – right now we continue to be up 🙂 This week Isaac needed a new feeding tube (because his mama popped a hole in his!), we decided to do it all at once and get an esophagram at the same time – that all happened today.
First things first, the esophagram showed NO LEAK still in Isaac’s esophagus!! What a huge, huge relief that was.
Today was a hard day on Isaac. I have always told him what is coming his way. My grandmother was an amazing pediatric nurse a long time ago, she passed away shortly after I had Isaac, but she made sure to tell me that she wanted me to always be open and honest with him about procedures and appointments. Since Isaac was a three pound baby I have kept him informed. Today he heard “hospital” and started crying….. that was so hard! He had a tough time with the whole day, but in true Isaac fashion he pulled it together and had a great evening.
We took a special trip to get a treat after his rough day, he picked out a fun racetrack – and we had a blast putting it together an racing the cars ALL NIGHT long 🙂
We wish this was the end for Isaac and his medical issues, but it’s not… we have to start to seriously look at options to address his right chest cavity – it is obviously smaller than it should be and the rib fusion limits his lung growth. We have finally made contact with Children’s Hospital of Philadelphia and have sent them information about Isaac. We are hoping their review of it is quick, and we can move forward with a solution!
It really stinks to add more to the Isaac plate, the last thing I want to do is put him through more surgery and more procedures – but we have to give him every opportunity to get big and strong and healthy that we can.
This weekend we look forward to a visit from friends, and a fun pizza party Saturday night with lots of running and playing and fun!

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miraculous

This afternoon Isaac had his OR date with Dr. Hess. Our initial meeting before they headed back was not very uplifting. Dr. Hess again stated his disappointment, then again told me that he would really like to take out the bad part of Isaac’s lung – but that it is just not possible with all of the problems already going on in Isaac’s chest. I did get to tell him that since the weekend Isaac has shown marked improvement, and we weren’t sure why since he was in such bad shape the first time we brought him here with this problem. He decided the best option now is to patch Isaac and let him continue to get big and strong……..
Then Dr. Hess came out of the OR (much faster than usual!) and had a smile from ear to ear. He told me he knows why Isaac hasn’t been sick – there is no longer a leak in his esophagus! I asked how it could be – he told me it was a miracle 🙂 Then he gethered himself and said that he thinks that with all of the forced scarring in Isaac’s chest last year that he may just initiate an inflammatory response and his esophagus may have just inflamed itself and closed……….. we prefer the miracle explanation!
My theory is somewhere in between, I think we caught it so early and got him off of G tube feeds and kept his lungs clear and the tract between the lung and esophagus from getting any bigger. Isaac was started on antibiotics very early this time around as well. Last time he had recurring pneumonias, and we didn’t know the source – probably for months.
So, TOMORROW we fly home! We are rushing to pack tonight, and still taking it all in. Our boy is so amazing – we have had a wonderful trip out here with him and can’t wait to get him home and celebrate once more with this awesome kid!

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kindness

Today we took Isaac to McDonald’s for lunch. This is not unusual in any way, but today we were going for a reason. Today was the “day of change” – a day that we are encouraged to go to McDonald’s and drop our change in that little box in front of the register – to support Ronald McDonald Houses around the world. We, of course, can’t deny a chance to support our RMH, so we collected change in the house and Isaac proudly sat up on the counter and dropped in his change, along with his wonderful big sister who pulled out her own wallet and dropped some change too.
Our friends met us today, the same friends we like to meet for dinner once a week. These friends are special for many reasons… their mama went to high school with Isaac’s mama, we didn’t know each other then – but our lives have brought us together now. The Bell family is pretty remarkable for other reasons too – besides having a crew of beautiful children, their children are also quite special. Their big kids are amazing, they are supportive and loving – and they have enveloped Isaac into their family so nicely. Their little kids are also quite special – they are both autistic. They are truly beautiful children (ALL of them), but the babies (as they are known in the family) have these eyes that you have to see to believe.
I sometimes find myself staring at these two beautiful children – because of the depth of those eyes. There is something truly remarkable there, but that is not what I want to focus on tonight.
We stepped out of our boxes a bit on Friday night, and we all met at IHOP – it had been a pretty crappy week and we all needed it. As usual, Isaac was thrilled to see his buddies. For a few minutes one of the babies was “stimming”. He was acclimating to his surroundings and taking it all in in his own way. His stimming was louder than the usual kid, but not horribly loud. My friend Melody used her gentle reminders to help calm and reassure him. In the middle of this a very unhappy lady (sitting quite a distance from us) expressed her disdain with some staring. Melody’s oldest daughter (who is an adult herself) approached the woman quietly and calmly to explain that her brother has autism – a very mature approach to a not so nice situation. In the end, this not so kind woman told Tyra that her brother was “ruining her dinner” and “shouldn’t be brought out in public”. I am furious now as I type these words.
In just a few short minutes Simmy calmed down, and sat and quietly ate his dinner. But this woman with an ugly attitude had changed our meal. What I said then is what I stand by now – she wasn’t going to be changed in one night, the next day she woke up and she was still an ugly person – ugly on the inside. Nothing said or done that night would change her.
What struck me is the absolute gall it takes to decide yourself that another human being shouldn’t be allowed in public, or to blatantly stare at a family that deals with more hurdles in a day than most of us face in a year. I’ve said it before – Isaac gets stares, and we address them accordingly – usually if we catch someone’s eye while they stare we can nip it right there. I have no problem explaining Isaac’s trach or feeding tube – and Melody’s family openly discusses autism. Her daughter did the right thing by calmly talking to this woman and educating her. Somewhere along the way we have become a pretty unforgiving, not very understanding society – and that makes me sad.
I don’t think there was a better way to handle that situation – Tyra showed her brothers and sisters how to honorably stand up to a bully and she showed them that she is willing to do that for them. Melody kept her kids calm and cool while this was going on, and once again faced a situation her family shouldn’t have to face with grace. I think the best way to handle something like this is to talk about it – and to stand up when we see others acting like bullies. Too often we sit back and watch, too worried to cause a scene, or step on somebody’s toes. It’s ok to speak up, and show support – you may not change the world in one encounter – but at the very least you may show somebody else that for every ugly bully there is someone who is willing to stand up to it…

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breathe deep!

Sometimes that’s what you have to do. Deep breathes. We had a few horrible days in there last week, thankfully they have ended! Thursday brought good things – our friends at Loudoun Hospital were able to not only place a PICC line in Isaac for IV antibiotics, but they also forced that just slightly too big GJ feeding tube into his belly – no more nose tube! As he woke up from anesthesia I asked him what was missing, he stretched his face and groped around – and sleepily said “no more tube”. “No more tube” became his mantra for the rest of the day – he was a pretty happy boy.
We fly to Minnesota on Tuesday, and Dr. Hess will take a look at Isaac’s esophagus on Wednesday – we’re not sure what the plan is, or if there is a plan. We’re not even sure any treatment will take place on Wednesday, what we know is we’ll be where we need to be. We are in the process of packing for an undetermined amount of time, and setting up care here for our sweet Eli while mama and Isaac are on our trip. Frantic is the name of the game right now.
In the middle of all of this we got the MRI results from Isaac’s last trip to Minnesota, they show the possibility of a tethered spinal cord – add one more thing to the “to do list”! If he does in fact have a tethered cord, and we don’t address it, Isaac could suffer some issues walking and controlling his bowels – so we have to get him taken care of sooner than later. When properly addressed Isaac should suffer no ill effects.
So, the increasing stress becomes – when do we fix this? Where does it fall on the list of priorities – between the leaky esophagus, fused ribs and possibly tethered spinal cord, where do we start??
After a few deep breathes we realize we can only do one thing at a time. We still have a pretty happy, crazy little boy. He is enjoying every day to the fullest – and in time we will take care of everything that needs taking care of. For some of it he will be angry, or hurt – but in the end he will be happy.

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