Graham Cracker

Graham Update Day 32 (7/10/14)

More firsts.  More news.  Another setback that Graham hip-tossed into positive progress.  In other words - a normal day for our amazing little fighter. 

There were also revelations of things to work on in the coming weeks as Graham works his way home, and then there is an answer to a question that lots of people have been asking lately.

Graham had a great time in all of his therapies today, and did remarkably well.  Yesterday, for the first time, he got on a swing with his occupational therapist.  As we help Graham to work his way back to health, it would never occur to me that swinging could be an effective therapy.  But his occupational therapist explained that for the last month, Graham really hasn't moved around that much. Even now that he is walking with help and sitting up and moving around, he never does much of anything more than slow deliberate movements.  So something that has not been worked very much is his vestibular system - the "sensors" in his ears that allow him to adjust to movement.  Yesterday he was able to hold on and swing back and forth with his therapist without getting dizzy or disoriented, and today he took it one step further - he was able to use his legs and his legs alone to move him and his teacher back and forth on the swing.

 

 

Graham also got to do more activities using both of his hands together.  Graham is a natural lefty, but is also quite ambidextrous.  He has written with both hands since preschool, and continues to do so now in his therapies.  But something he hadn't done much since the accident is use both of his hands together to accomplish a task.  Play Dough was the answer today.  He loved it, and his therapist even gifted it to him so we could take it back to the room and he could continue to play with and enjoy it.



 

The progression for someone coming off of a feeding tube is first liquids, then purees, then soft solids, and finally a full diet.  Graham has done just fine with liquids and purees, and today he was supposed to move on to soft solids.  He did have a little bit of a setback though - an administrative setback.  His orders were never put in the system to allow him to eat soft solids, and so his speech therapist was unable to order the Holy Grail of Graham's extremely diverse palate - macaroni and cheese.  This was kind of a  bummer because that meant his progress would be hindered a bit - a delay of a day in getting back to a normal diet.  But his therapist stayed aggressive, showed faith in Graham, and skipped straight to the end of the culinary line with the most fitting first solid that our little fighter could eat.  Yes, Graham's first solid food that he has eaten since the accident was a graham cracker.  So just when we thought that something as simple as a missed order would hold him up a day, it instead resulted Graham being cleared to eat a full diet.

Graham managed to squeeze in a little nap between speech therapy and physical therapy, and during that nap we got a visit from a member of Graham's neuro team.  She brought with her great news - Graham will "officially" be leaving Children's Medical Center on Monday.  I place the proverbial air-quotes around "officially" because things change really fast around here, but with his sodium in a very good place for the better part of two days now, it looks like there won't be anything holding him back.  Literally -  Graham should be getting his PICC line (sort of like an IV in the arm, but has a catheter that runs clear to his chest for medication and blood draws) removed in the next few days, his IV fluids will be turned off soon, and Graham will be completed disconnected from every line, tube, and monitor that he has been hooked up to in the last 32 days.

As we do more therapy with Graham several things have made themselves manifest.  First - it's very tiring for Graham, both mentally and physically.  Right now Graham basically needs a nap after each hour long session, and I don't blame him.  What he is doing less than two weeks after brain surgery would be the equivalent of us taking the SATs and having two full-body workouts in the same day.  It's very taxing, and yet Graham NEVER complains.  In fact, I have never seen him so happy.  He smiles, jokes, and plays tricks almost constantly.  Today we actually talked about home for the first time with Graham.  We asked him if he wanted to go home, and he just thought for a minute.  Then we asked him if he wanted to "go home, or stay here?"  He said "stay here."  It is such a blessing that the hospital doesn't scare our shy little guy, and in fact it treats him so well that he actually loves it here.  His therapists, doctors, and nurses amazing, and given what they have to do and see all day, every day, I would say they are all "True Superheros" in their own right.

Other things have shown themselves as hurdles for Graham to get over.  First, although he has opened his right eye, he doesn't do it much at all.  So hopefully as the swelling continues to go down (his right side is MUCH more swollen) he will open it more and start seeing out of both eyes. 

Graham's right side is also weaker than his left, so he will need to work hard to strengthen it.  Often times when we think of a weak side of the body we think "stroke."  There is really no evidence that he ever had a stroke (sudden disturbance of blood flow in part of the brain), but the weakness is consistent with brain trauma.  He shows pretty much the same level of coordination with both sides, so we are hopeful that with time he will regain his full strength.

Graham understands everything that we say, but in a way he is still a little groggy, and here's what I mean:  Sometimes when you and I are really tired, stressed, or experiencing a bad headache, we can understand anything that people tell us, but we will struggle to follow complicated instructions.  If I am really preoccupied with work or something else and Lindsey TELLS me a few things to do, and gives me a few things to buy at the store, I will understand everything she told me, but I will only remember the last thing she said.  That is where Graham is right now.  If you tell him to rub his tummy, he will.  If you ask him to make an X with his fingers, he will.  But if you ask him to make an X with his fingers and then rub his tummy, he's only going to rub his tummy.  So in the coming weeks we will work more closely with him to follow complex instructions and blow out the remaining haze from his accident and subsequent surgery.

In recent days, some people have either asked us directly or asked those close to us "why don't Lindsey and Micah post pictures of Graham's face?"  Nobody has been rude or pushy or unkind, just naturally inquisitive.  The reason is really quite simple - I won't do it until I feel Graham can consent to have those pictures posted online.  With social media and the internet the way the are today, you cannot stop the ripples once you've thrown the stone in the pond.  Graham looks great.  From at the side of his face from the left side, you almost can't tell he has been in an accident, save it be for the big scar across his scalp and a bit of puffiness in his forehead. We know his right side will like great too because he saw him right out of surgery before the swelling set in, but right now the right side of his skull is still quite swollen.  He has a few abrasions that still show.  And I cannot say with absolute certainty that Graham would want his pictures to be "out there."  He is happy as a clam right now, but we don't know how he will handle things in the coming weeks, months, and years.  We've already been told that he will likely need to consult with a neuro-psychologist through his teenage years.  So given all that uncertainty, we are just trying to protect our son as best as we can, while still allowing his miraculous recovery to hopefully, in some small way, bless the lives of others.

So Graham is making leaps and bounds in his therapy, and our wiz in the kitchen who makes the best peanut-butter toast in the country is free to eat anything he wants, although we will probably hold off on the jerky and sunflower seeds for a while.  Graham is a walking, talking miracle.  I would not wish Graham's accident on anyone or on any family.  If we could somehow go back and undo it - I would in a heartbeat.  But even as I say that I am torn, because I know that the suffering and sacrifice that Graham has been through has made me a better person and a better father.  This ordeal has brought our family closer together and closer to God.   Graham's fight and cheerful demeanor inspire me. In a way I feel guilty that I had to learn so much while standing in the wake of his horrific accident.  But nonetheless, I am so grateful that Heavenly Father saved my son and has blessed my family both directly and through the many people who have come rushing to our aide with love and support.  In spite of it all, my family is, in many ways, better off now than it was 32 days ago.  And we owe it all to a network of faith and prayers that span the globe.  Thank you all for praying for our son, from the bottom of our hearts.