Thursday, July 18, 2013

The Space Between

The space between the tears we cry
Is the laughter keeps us coming back for more..
- Dave Matthews Band

This lyric can be so true to life..

I will try to fill in the gaps of the space between now and when I last posted to the blog about 7 months ago. I have had issues with the website and loading pictures and text, which made me less inclined to blog due to the hassle.

Through Christmas and New Years, Samuel continued to recover from his Medtronic Gastric Neurostimulator placement surgery. He rested alot at home and slowly began regaining some weight he had lost. We enjoyed our annual trek to this road of spectacular house lights in the north part of the county. I am glad we are a family that enjoys our traditions.

We gained a new family member in our black New Zealand Rabbit, named Luna. She has been a great addition to our home, especially for the responsibilty gained by the girls in caring for her. Sam learned how to climb aboard and ride a little motor car..zoom zoom. We are working on him riding a tricycle in therapy. He really wants to own the road!

As Sam's surgical incisions healed and he felt more active, I gingerly began bringing in more opportunities to get out and about. After trialing the stimulator on the outside of his body so long, it is now tucked away inside his body and no worries of leads getting yanked etc. It has been such a miracle for him. He is in so much less pain and tolerating food into the G tube instead of only by slow feed through GJ. His development has surged since it's placement as well.

As Sam rebounded over the holidays, we made a trip to the local US Air Force Armament museum to see the planes. At that point he was only using one to two words at a time and depended more on his signs to communicate. This did not curtail his ability to relay all of his exuberance and emotions to us. The expressions of pure excitement at seeing these metal birds of the sky were priceless. He was trotting around the property and showing such increased stamina that day that I could only attribute the gastric stimulator and addition of oxygen therapy to the improvements.

The girls also enjoyed this outing. Learning about military history and talking about the contributions of the many service members in our family is one way I try to pass on the presence of my father. This is the kind of educational family field trip he would have encouraged for his grandchildren had he the chance to know them.

From January through February, Samuel faced several illnesses that tried to knock him down but we were able to keep him tolerating his pedialyte, teetering through crashes without hospitalizations. We did experience several bigger brady events and a few seizures, so meds were adjusted and we did more halter monitering. We had one strange situation where his heart rate plummeted on one particular day while exercising, when usually his symptomatic bradycardic events happen when at rest.

Sam had his gastric settings increased while down in Gainesville for followup appointments. His distention and comfort seemed to be responding to those changes. We still were not getting alot in by mouth but far less GI pain, residual on venting and more universal activity and growth. His weight had gone down slightly after the surgery but climbed steadily in the New Year and has now reached a little over 30lbs. with a length of 33 inches. This places him on the charts in the 20th percentile for weight (YAY!!) but still not on the chart for length (no biggie for me as I never planned on having a Basketball player for one of my kiddos). On a developmental level, we shot up in speech abilities between January and March..from two word pairings to 5 word sentances and asking questions, explaining his day and telling us how funny something is.

At the start of the year, we began all the IEP preperations for Samuel's transition from Early Steps into the public school system. This is an important phase as it relates to ensuring his therapy needs continue to be met and that we avoid regression, keep moving towards his individual goals. The school therapy has a very different focus than that of private sessions. The school therapy is meant to support educational goals, which means we have to find a balance in giving him all the support he needs in all areas with a finite amount of energy and time awake daily. This was a learning period for me on all that encompasses the IEP process.

This transition was an altogether eye-opening experience in more ways that I ever anticipated. In the end, I am really pleased with how things are situated at present. I was always told that if you fail to ask questions or advocate for your child, noone else would step up and make sure their interests and needs were met. Some of this may be true in certain settings, but we found that in Sam's case, his evaluators and the entire team really wanted to help him be successful. I had such fears that they would not understand what our priorities were and what his condition really meant in relation to his needs. Sam is unique in this process I think because he appears very typical on first glance and this can leave your guard down. So much of his health, growth and performance ride on on the balance of energy and wellness. Stress avoidance and caution with endurance limits can crucially impact his ability to reach his own bright potential. With faith, motivation and cautious perseverance.. we will press on for great things for Samuel.

This year, Spring Break and Easter came in with a lamb. Our girls enjoyed egg hunting and time off school. Samuel wanted to gather eggs at each opportunity but the stimulation and exertion of the process really overwhelmed him. He would point and start to bend over and then look unprepared for the mission and retreat. He enjoyed watching his siblings and the children of our church, but it became keenly obvious how much physical exertion it was taking amidst all the activity. Bending up and down for empty plastic eggs was just not worthy of his effort. I really couldn't blame him but I so wanted to see him love this time honored tradition!

One evening, while I was at the office setting up for a seminar Jason was giving, I got a call from the nurse saying Sam had taken a fall and his teeth were jammed up in his gums. He needed to see the dentists regarding trauma to the upper teeth and because he is "complex," this morphed into a bigger issue than usual. Since the nearest pediatric dentist willing to see him was all the way down in Gainesville and they could not just jump in surgically due to his anesthesia concerns, we had to make several trips and everyone is still not sure whether his permanent teeth will be damaged. Nothing is ever easy for this sweet boy! I hated for his smile to be effected since already some people stare at him openly in public for all the equipment that goes with him. He is maturing and has asked me what they are looking at. He completely gets it now and that worries me. Sam is so very bright and social. His siblings are his whole world but he wants more buddies if I could find more safe opportunities. The sad part for me is that he lights up and relates when he sees characters on TV in a hospital setting or a senior citizen wearing oxygen in a restaurant. I gotta get this kiddo to some typical playdates! :)

On that note, we have prayed about an opportunity that came along for Samuel to speak and represent a very worthy cause as an ambassador. Our family will take part as a miracle family for the Children's Miracle Network Dance Marathon supporting UF Children's Hospital at Shands in the coming year. I will have to share more on this great opportunity later.

Spring to Summer

We experienced some symptomatic bradys in June. Most events have centered around illness. At our cardiology appointment, the pacemaker was again on the table and possibly implanting something called a Medtronic Reveal which could record his brady details over a longer period of time. After three years of knowing he experiences these life threatening events, I am not sure what more we will learn but it is something we will investigate. As the bradycardic activity has actually included asystole pauses long enough to make his physicians realize sudden cardiac death was a real possibility, noone wanted to jump at dropping off the medication that has been helping. Even though we now seem to have far less episodes, the fact that we have any at all mean our cardiologist suspects pacemaker is still indicated as the solution. So you might wonder.. why not just do it right away? Well, because it is open chest surgery on a child his size and not a cath/ sub Q procedure and really every surgery puts Sam at risk for serious setbacks. The device has to be placed against the heart wall. UGH. Batteries have to be switched out periodically like his abdominal device and it just is one more big intervention than we would like if medication can manage the situation. Just have to pray about this and get more information. We are getting one more opinion from the Electrophysiologist/Cardiologist at UT in Houston who has experience with mito and dysautonomia which may help us.

Break for Summer

The girls finished out the school year and both had many end of school year activities. They jumped into summer and our pool with both feet and have enjoyed every moment thus far. VBS and golf camp activities have kept them busy while Sam began his summer school schedule of therapies and homebound education. I struggle with things falling through the all moms.. be it laundry, quality time with the girls, making dinner or just having quiet time to myself. I am feeling deflated and overwhelmed by life right now. I know it is the slam busy schedule and stresses from 3 years of being in survival mode. Something's gotta give some days.

On a positive note, my mother had her long awaited cochlear implant surgery recently and when we had it turned on... it was a pure miracle. After no hearing for many years, she can hear now. There are just few words for this. Her quality of life will be so improved, in fact, it will be great for us all because communication has been so difficult.

The last two to three weeks have been pretty tough for me as we have watched Sam have some worsening respiratory issues at night and also the appearance of seizures not being controlled by his medication. It began when he had a stare off episode during OT and was making chewing movements on one side of his face. His Dr. adjusted his meds a couple times and we are still having issues.. so I am hoping things will get better or answers will emerge after the sleep study we have coming up in a week.

This was an incredibly long post to recap the last six months and yet left out so many details. Life around here is just so full and jam packed lately.

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