Our family recently returned from a long weekend in Orlando at the Family Cafe, a summit for Florida's disabled community. We were sponsored in part by Sam's Early Steps (early intervention therapy) organization. Although I have never seen so many wheelchairs and working dogs, the word "disabled" just doesn't describe this group at all. The individuals I met were in fact quite "capable" at not letting their challenges stop them in their tracks. There were singing groups and interesting speakers who informed us on important topics. Advanced technologies and sign language were allowing many to better communicate. There were parents seeking out educational remedies and equal access, behavioral therapies and special diets. There were quadriplegics enjoying the resort's lazy river. You can't help but feel inspired when you witness the efforts and attitudes of these individuals.
We met so many diverse adults and children alike and although they all had medical or physical or cognitively limiting conditions, the condition I spotted first and foremost was that of their serving and caring hearts. Never have I witnessed more people offering assistance to one another! Such compassion, patience and freely offered courtesy surrounded us. Understanding eyes and open arms at every turn.
This morning as my pastor talked about the importance of service, I reflected on how simply these families made simple gestures and respected each other with their service. God was there, amongst that special community, as they looked for the answers on how to live life best despite the challenges... helping eachother up the hill. I imagine that someone had already touched their lives, shown them christian love and support. Perhaps it is just that it is easier to see when you have been broken. I certainly stopped and looked at life differently over the last few years and I am left humbled and thankful. I will never be able to fully thank those that have stopped and shown my family and I compassion with their support and prayers. We don't know the challenges that Samuel may face ahead, but I am quite certain that his heart and ours will forever be changed by the kindness we have been shown.
It was a Happy Father's Day weekend overall!
As for an update on Samuel, we somehow got through the trip with only one particularly rough day. The drive went ok considering how long it was and how many of us were crammed in our van. We had the nurse and her daughter along as well. This pic is of the 6 passengers in the back while Jason and I were in the front... cozy! A bit like National Lampoon's Family Vacation. If I heard, "Are we there yet?" from Bella one more time I was going to lose my mind!
That night, however, Sam took a downturn in his physical abilities as I watched him walking into walls and falling more often. Then came the onset of intense gut pain. We were blessed to have the nurse along with us for the trip but she only worked certain shifts so during that particular evening we were on our own. Our mistake was in placing the pain meds in the nurse's room who had already retired. It made for a long night, considering that we also had the 3 other kids in our room with the 2 cribs. After stopping his pump, Sam eventually found some rest and awoke the next morning seemingly stronger. By noon the next day, however, he was retracting with his breathing and experienced a low brady and some sat drops. He was having low respirations as well. This meant the nurse had to keep him in the room resting while we were at the conference. It is a little scary getting texts that your child is having episodes all the way up in a high rise hotel room while you are attending seminars. This was a large resort and it was packed with disabled attendees so there were more than a few ambulances showing up while we were there. Needless to say, I was on edge.
As the girls enjoyed the hand's on crafts and activity functions planned for their age group, I couldn't help but feel sadness at Sam missing the fun.
Sam did seem to rebound later so we had a nice dinner out at the T Rex Dinosaur restaurant in Downtown Disney. He loved the roaring and stomping sounds as well as the prehistoric decor that engulfs you. We ate in the ice cave and this room spooked me and Max a bit, but the girls really loved it!
We couldn't go to Disney while in Orlando because the season passes my husband and the girls have from last summer are blacked out during certain weeks and this happened to be one such week. Sam probably would not have been able to handle the heat of attending the parks this time of year anyways, but I had thought an hour or two might be fun for him in the evening hours... maybe next time. Instead we spent some shorter periods down by the resort pool, which he thoroughly loved.
There is always this nagging worry that heat or over stimulation is going to put him over the edge or lead to a metabolic crash. I know I should feel more secure as this has been a far better year overall than last, but this is such an ugly disease and fear of the unknown seems ever present. I make every effort to focus on the positive and good things happening everyday, but it is hard when our boy is always so tired and the slightest stress can lead to big trouble.
This week has been particularly hard as another sweet child gained their wings and left this world after bravely fighting Mitochondrial Disease for 5 years. My prayers are with Mylee Grace's family. Though I have never met them personally, by following their story online I shared in their ups and downs and could relate with their pain. No parent should go through this kind of pain. I hope they find peace in their faith. My prayers are also going to the family of Wyatt who is facing the end of his battle with this horrible disease. Their sweet family needs to be lifted up in prayer as they go through this very difficult time. I can't even imagine how they are coping. I can only pray God embraces them and carries them through.
My other prayer requests are for some friends who have experienced an unexpected stress in their path. I know they will persevere through this challenge and will look to their faith and love as a family to pull them through it. Whenever I have felt completely finished and that life has gotten the best of me, I find peace that things will look differently if I can just hang in there. Another prayer I am lifting up is for the mother of 4 kids I babysat for as a teenager. I always envyed her for juggling 4 boys and now I know she is probably feeling like her biggest effort is yet ahead of her as I am told they have just found out she has a brain tumor. I can only imagine how scared and overwhelmed they are at this news. I am praying for the wisdom for her care team to make the best plan and for strength for this family. I hope I can help them in some way.
Saturday, June 9, 2012
Matthew 11:28 (NIV) Come to me, all you who are weary and burdened, and I will give you rest. After several bouts of concerning illness periods with his typical declines in gut function amidst intense pain, Samuel has had a rough couple months. We had to replace his GJ when it yanked out one day and have delt with adjustments to several medications in responce to an increase in Bradycardic events with convulsions. He did better once the medication was adjusted but then to have the illnesses made for several weeks of worry for the rest of us. Somedays to say I am weary is an understatement.. I am just flat out tired at times, but am trying to find outlets for the emotional periods and stay positive overall. Samuel's pain and comfort are my priority. Right now downturns are intermittant and luckily he has rebounded each time. On so many levels Sam is doing really well. He is learning to go up stairs now with help and is trying to pick up speed with his walking... but not quite running yet. He is playing with toys that were never of interest before and is using good strength at lifting objects during wellness periods. It is sometimes hard to imagine that anything is even wrong. He is playing with his sisters and trying to talk more. We have to pull more of his speech out with cues and questions, but I know he will get there with expounding it himself. He is so social and happy around others. We are dealing with some typical two year old behaviors.. so that is even encouraging. Then there are these dips.. For instance, we do PT for an hour when he first wakes and about 30 minutes in he starts wanting to lay his head down or can't seem to keep up as fast. Then he falls asleep and sleeps for 6 hours straight. Then the day is gone and we do a bath and try some dinner and he is down again. If an illness comes along, he quickly shifts into an even weaker mode. This week he was overwhelmed just sitting on a sunny patio. We had gone to Atlanta for medical appointments with his GI specialist, dietician and the Mitochondrial Specialist. The drive went ok but that night he had 3 apneas and was not looking great. He was crying out with GI discomfort and we have to pause his feedings for most of the night. We usually go to Pedialyte and inch back to formula but even then he was just not himself. His Drs talked through some protocols for dealing with the gut shutdown periods and other illness issues, like the pain. The latest illness began with an infected epiglottis and he was in tremendous pain, which seemed mmore from the gut than from the throat area. The protocol is usually to stop his food and go to pedialyte and then try to inch back to formula but the question of the hour is always how long is too long without the nutrients he needs to get well. We tried everything for the pain, including tylenol with codone prescribed by his pediatrician. The GI Dr wanted to try an antispasmodic (bentyl? maybe) but that has drying side effects and he is already on robinul which drys him out so badly. The Mito Dr says we should try methadone and that although it sounds really heavy, it is actually a good pain choice. My concern is that anything we give him is going to increase problems with his motility. They believe the pain is neuropathic in nature and less about actual cramping but more so about the neurotransmitter problems associated with the low ATP his electron transport chain is able to produce. I just don't know what is best, but I imagine that writhing in pain and slamming his head into the floor and breathing so hard with retractions etc.. is not helping our energy problems. In Atlanta Sam had more Resting Metabolic Rate testing which as usual was in less than a restful state. He has failed these in the past so I am not sure the reasoning for continuing to do them. He becomes so hot and exhausted in the bubble contraption. The first one he ever had at 9 months old was while sleeping but these last two were not quite so easy. We then had this exhausted little guy to get back to a hotel room to rest before his other scheduled appts over the next two days. He ended up with a draining Pink Eye and gunk in his nose that evening. It is always something.. we can't seem to get through one trip without a hitch on some kind. I was just glad we got back home the in the wee hours of the morning. I was literally slapping myself to stay awake on those dark back alabama roads. Luckily, Sam's nurse had gone along with me and agreed to take the wheel the last leg of our trip. God does seem to send angels just when you need them. I am not sure I could have made this trip alone with Max and all of Sam's equipment and trying to navigate all over Atlanta. I am getting better at this with each trip but it is so much easier with an extra pair of hands and eyes. As for new insight from the appointments, most things will be staying the same with his treatment plan. The dietician did not want to mess with his current formula regimen as he is finally up on the growth curve for weight (far off for height) and she does not want to have him unproportional. It would make respiratory issues even tougher if he was fighting alot of middle weight. So.. he is a compact little guy for now. His brother is 4 months old and quickly coming up to his size. Max is 18 to 19 lbs (depending on the scale) and is 28 inches. Sam is 25 to 26 lbs and 31 inches. It was funny when the GI Dr got a look at Max in the same exam room. He said, "That one sure does not have his brother's challenges." They did end up giving me a new Peptemin Jr formula to sample as it is 30 cal/ oz and we could buy 4 more hours off the pump as he currently has to stay connected to it 16 hours/day. Maybe this will be a helpful solution for more time off the pump but it will mean he needs more water flushes beyond the pedialyte we already flush with every hour. The mito Dr. also wants us to consider more genetic testing as they still don't have a genetic answer for his condition. They have new testing techniques that can test for scores of other genes at one time. We are already giving them so much blood and urine regularly for metabolic testing, I see no reason that they can't test it for genetic stuff. I honestly don't expect those answers to be found however as I expect his issues were related to mutations caused through stress inutero or disruptions in the oxidative process at birth .. but I am always open to finding out the answers. The cost is the other issue. We are already battling insurance on so many levels and their office is already hung up over insurance on the testing he had done with his muscle biopsy, that was supposedly already pre-authorized. Thousands of dollars more in testing is really only doable if insurance will cover it. They say it could be helpful with prognosis and looking at possible phenotypes. As for the girls, the end of the school year was here before we knew it and now we are jumping into the dog days of summer amidst incredible heat and humidity. Sofie missed her VPK graduation after a stomach bug hit the preschool but luckily she seemed to rebound pretty quickly. Lately, the girls are spending much of their time swimming and playing together. I hope to also encourage plenty of time spent on more educational activities this summer with lots of reading. I am sure the summer will fly by in the blink of an eye. In moving forward for Sam, I am scheduling followups with pulmonology and ENT on recommendations from his other Drs. We already have his routine echo/ cardiology appt scheduled for later this week so I am hoping to squeeze the other two in on the same trip to Pensacola. It is so hard not having resources closer to us. His Atlanat Drs keep asking when and if we plan to relocate because it would be so much easier for a complex kid like him. But we love our hometown and really need the support system we have here. In other news, I am facilitating a faith based parenting discussion group this week at our church that I hope will bring together other parents looking for some adult conversation in the midst of their hectic week. Jason and I have had little time to spend with other couples in similar phases of life and I think it would be a positive experience. So along with prayers that Sammy plug along with his wellness, I hope to enrich our summer with positive activities for us all. By the way.. blogger is not working well and won't let you seperate your paragraphs.. any ideas on how to fix this?