I'll start with the progress, and I will not deny that I have shed tears of happiness as I have watched him along the way. He continues to LOVE school, and now that he knows where the school bus is taking him he's beyond happy to board the big yellow road machine on school mornings.
He still receives his physical, occupational, and speech therapy at school, and we have nothing but good things to say about how hard his therapists and teachers have worked to help him improve in all areas. He recently began walking without the assistance of his walker, which has been a huge accomplishment! He was a little timid initially, with some uneasiness about walking outdoors or outside of our home at all. Yet with practice his confidence improved quickly and he can now walk independently for fairly long distances, indoors and out! Check out the video of him walking on his birthday in October when he was just starting to get comfortable without the walker inside our home. Best of all, it means he can fully participate in our frequent family dance parties...while dancing on his own two feet! This has saved his pants from getting more holes in them, and my back from not carrying him as much!
Ryan's receptive language is excellent, and his speech is progressing quickly. Although he still has difficulty pronouncing certain letters and making certain sounds he's speaking in full sentences much of the time. I was ecstatic when his speech therapist recently told me that, although is speech is delayed, it's developing like a typical child! He still uses some sign language but we haven't been learning much more of it due to his increase in verbal skills and ability to show us what he wants (if he's not able to verbally express it). "Oh okay, cool mom" is one of my new favorites. When he says, "momma I pooped" I am pretty sure he's very near being ready for potty training, so that's going to be another milestone to look forward to.
He is able to sing many songs now too including, "Happy Birthday to You", "Twinkle Twinkle Little Star", "Itsy Bitsy Spider", "Up on the Housetop", and "Wheels on the bus". He is still VERY motivated by music and truly enjoys it...which of course he gets from his music lovin' mommy!
He can identify colors, basic shapes and count to ten and seems to learn new things every day. I couldn't be more proud of Lauren and Zachary who have become even better older siblings. They are patient (well, most of the time!) and willing to include him in all the activities, games, etc that he's able to do. He learns and grows by simply being around them, but even more so by being truly accepted and loved by them.
He is now almost 19 pounds at the age of four. He is very active and walks, dances, climbs, boxes, plays swords, tackles his brother, and so much more! This leads me to some of the challenges he will be facing this year. Things that I am positive will only hinder his activity level temporarily, and not his long term-progress. Yet although Ryan is bigger, stronger, and healthier overall than he has ever been it's a mother's nature to worry about him undergoing surgery. As I worry I am certainly staying positive, knowing that he is a determined, motivated, resilient little boy that's ready to prove the world wrong and ready to face the challenges he needs to face in life to do it.
Although we bid farewell to his G-tube/Gastrostomy tube (feeding tube) in January of 2010, the site in his stomach hasn't healed properly. This has resulted in blood and stomach fluid leaking out of him for the last year. It has been determined that this will not heal on its own and does require surgical repair.
What he has is called a gastrocutaneous fistula, which basically means that the hole never fully closed and is causing the drainage. It has been found that "the incidence of persistent gastrocutaneous fistula is high after gastrostomy tube removal in children. The most important factor predisposing to this problem appears to be the length of time the tube is in place before its removal. Almost all tubes removed within 8 months will close spontaneously." (http://www.jpedsurg.org/article/S0022-3468(99)90008-8/abstract)
Ryan's tube was in for 2 years and 5 months, so due to the length of time his tube was placed before removal, he was at higher risk of developing the fistula. This surgery was scheduled for this week, but yesterday we found out that it had to be postponed due to a respiratory cold/virus over Christmas break. So now the surgery will take place January 24th. We will be working hard at keeping him well from now until then to avoid another postponement. His recovery for this surgery is 6 weeks, with the first 4 weeks requiring strict limitations on any activity "involving his core". Well, if my motherly instinct is still functioning properly I'm pretty certain this is going to be a difficult task for Mr. Super Active without the help of Elmo DVDs. It's hard to imagine telling him to sit still after how hard he has worked to achieve his current level of activity.
Once he gets through that surgery and safely and recovers we will be faced with planning a date for his open heart surgery. Until recently we had been hopeful that Ryan's Atrial Septic Defect could eventually be closed by a procedure that would be less invasive than surgery ("Most of these can be closed in a cardiac catheterization lab (In this procedure, a thin, flexible tube called a catheter is inserted into a blood vessel in the leg that leads to the heart. A cardiologist guides the tube into the heart to make measurements of blood flow, pressure, and oxygen levels in the heart chambers. A special implant is positioned into the hole in the septum and will flatten against the septum on both sides to close and permanently seal the ASD.), although some will require open-heart surgery". http://kidshealth.org/parent/medical/heart/asd.html#)
(Atrial Septic Defect/ASD: sometimes referred to as a hole in the heart — is a type of congenital heart defect in which there is an abnormal opening in the dividing wall between the upper filling chamber, the atria).
Our most recent visit to Ryan's cardiologist revealed that he would likely have to have surgical closure after all, as his ASD has not gotten any smaller over time. In fact, the reports from each echocardiogram have shown a slightly larger hole. This is not because it has been growing, but rather that since he has gotten older and "less squirmy" they have been better able to get an accurate reading on the size of his hole. Initially they thought it to be 9mm and now it's measuring at 18mm...which is really how large it has been all along (it's my understanding that they don't get bigger. In the defense of the echo techs, I'll admit he's a stellar patient now who sits very still for these tests. This was NOT the case when he was 6 months old when they began measurements). The need for cardiac clearance prior to the stomach surgery seemed like the right time to seek out a second opinion regarding his ASD, and the recommended plan for repair.
In November 2010 we saw an interventional cardiologist at the Cleveland Clinic who regularly performs repairs with the catheterization procedure for children who have smaller ASDs, and she confirmed that his hole is too large to be closed without open heart surgery. She suggested that although there are no symptoms causing us to believe that this is an emergent situation, the surgery should be done sooner than later. One reason being that children tend to NOT have long term memory of such events if they are under the age of 5. Additionally growth problems are a symptom of ASD, and a symptom of WHS (Wolf Hirschhorn Syndrome) and the only way to find if he'll grow is by fixing one of them. We cannot take away the syndrome, but we can repair the heart. It may not increase his growth, but there's a chance that it can.
Additionally "if an ASD is not treated, health complications can develop later, including an abnormal heart rhythm (known as an atrial arrhythmia) and problems with how well the heart pumps blood. As kids with ASDs get older, they also might be at an increased risk for stroke, since a blood clot that develops can pass through the hole in the wall between the atria and travel to the brain. Pulmonary hypertension (high blood pressure in the lungs) also can develop over time in older patients with larger untreated ASDs". (http://kidshealth.org/parent/medical/heart/asd.html#)
Of course we've sought opinions about local doctors and hospitals, and have decided to pursue both surgeries at the Cleveland Clinic. Once Ryan has fully recovered from his stomach surgery, we will seek the recommendation of the cardiac surgeons regarding a surgery date for the open heart surgery. In my non-medical mom's opinion he will NOT be recovering over the summer, in fairness to him, Lauren, and Zach (okay, and me) to be able to travel, swim and enjoy the summer to the fullest. It would not be fair to expect the kids to deal with the recovery during their summer, unless it were an urgent situation (especially now that next year Lauren and Zachary will both be in school 5 full days/week).
So I anticipate if the spring is too soon to have the surgery he will not have it until the fall. I have talked to other parents who have children who have undergone heart surgery, and have learned that an ASD is a fairly common repair. This is good news, helpful information, and certainly a relief to hear; but of course I'll worry and will be impatiently awaiting the moment the surgeon walks out to tell me that all is well.
Ryan no longer requires the care of a nurse at home but continues to have an aide who comes to care for him 12 hours per week. This allows time for me to take the older kids to do "big kid" things that he cannot yet participate in, and since he continues to get much of my attention due to his continued need for physical care (getting him dressed, diapers, etc) for a much longer time than a typical infant sibling would have...Lauren, Zachary, and I appreciate this time together. I also get some time to do get things done around the house now and then. Our current aide is an education major and really focuses on teaching him during the time that she's with him. I anticipate appreciating her help even more while Ryan is recovering from his surgeries, as well as the help of family and friends.
Once these medical issues are resolved, I have no doubt that Ryan will make more progress than we have even seen thus far. I truly believe that with his positive social skills, motivation, and eagerness to learn and be a part of the world around him, there is no stopping him. There is no limit to what he can achieve, and I cannot wait to see what else he has in store for us!!
Thanks to everyone for your support and love. I certainly couldn't be as positive and strong as hope I have been for him, Lauren, and Zachary without your love, support, and encouragement. I look forward to updating you with more positive progress over the next year, despite these hurdles.
