Oct 1: Brayden’s birthday

Today we went to Brayden’s 5th birthday party. Brayden is 10 weeks younger than Jayden, and they have been friends since they were born. It was a beautiful day and wonderful outdoor party, with tractor rides, train rides, yummy food and a play set.
I will be honest, it was hard to be there, seeing all of the boys Jayden’s age running and playing together, while Jayden played with us on the play set. He didn’t care. He would watch the boys then go back to playing with us, but it broke my heart. Parents stood around and lightly supervised their kids while they chatted about how as their children they get physically easier to take care of….while we tried to smile as we went up and down the play set with our kids. Our lives are just different. Not even bad. It was just a sad reminder of what Jayden can’t do, but a happy reminder that we are happy being different.

Continue reading “Oct 1: Brayden’s birthday”

Sept 13: Dinner at Angies


In all the years I have known Angie, I have never had dinner at her house. She is always so gracious to come to our house because of the kiddos, but this special night, she had us over for a great dinner. Ravioli…and not the kind in the can! Thank you Angie for a great night!

The picture is our “glamour shot” pose!

Sept 2: Robins Birthday


Robin has been my best friend since fourth grade. Because we are both only children, we call one another sisters. She is so precious to me. I love that we can go months without talking, and just pick it up from where we left off the next time we chat. She met a really nice guy, Matt, who I just think the world of.

There’s a lot to be said about easy. Like your favorite sweatshirt, a summer evening breeze, or a great friend….there is something warm, comfortable, and familiar about Robin. I love her so much!

Thank you, Robin, for always being there. For taking care of my phone drama, my life drama, and any other drama I brought you along for the last 20 years. You are an amazing sister, and I am so glad we are on this journey forever together.

LOVE YOU!

August 28: EXPO

iMPACT high school youth ministry is in full gear! For those of you new to the blog, I am a part-time youth ministry assistant. Yes, this crazy mom works with high schoolers…and I LOVE them! In fact, we are in the market for a high schooler if you are interested in loaning/renting one out to us!

I am really proud of the expo. It was our first year doing it and we had 75 students and their parents there to showcase all our ministry opportunities and introduce them to our volunteer staff. It took a lot of hard work and planning, but I think we pulled it off.

I will be honest. To say I have been stretched too thin is an understatement. Not at my job-my emotions. Last year, we had about 4 events for Build with the Boyces and I remember commenting about the emotional stress it had on me the few days after. I don’t know how to explain it, but being the center of attention-being the charity case-being the one in the spotlight, smiling, being strong, explaining Sanfilippo as Jayden twists and turns around me as I smile and try to pay attention to what someone is telling me….I am just drained. This summer has not allowed me time to recoup from one event before the next one starts. And, I feel guilty for even having emotions because everyone is so generous and has worked so hard….I am thankful and want to be there! But-I have been on TURBO speed this summer and realized it when I had my first chance to breathe after the EXPO.

It didn’t help that I was coming into the EXPO with the weight of the summer on me. But I am sensitive. Funny how out of 30 compliments, the 2 negative ones carry the most weight. I can’t spell, that is obvious by my blogs. And instead of these 2 people noticing the thousands of words I spelled correct, or the 20+ hours I invested into the event, or the overall success of the event…they point out a misspelled word. To further the blow, one even commented on how the parents were all making fun of it. I know, let it roll….but I didn’t. It was the infamous straw that broke my back. I left broken and in tears. I cried myself home and had some Jayden therapy (held him sleeping for 45 min) as I cried into his little shirt. I know pathetic. But, it helped.

I realized something convicting. I am no better than those 2 people. Critical and negative. Waiting to fix, correct, point out, any and every “wrong” I notice. Why? Why do I do that? Why can’t I show a little grace? See the 100 good things instead of the one bad thing? I woke up the next morning and apologized to Jut because he get the brunt of it. Lesson learned.

August 22 Let’s get physicials, physicals….


Jayden and Brooklyn (and Ama) went to get physicals/annual check-ups at Lake Forest Peds. What an adventure! It was a rough one with both the kiddos bouncing off the wall! We did shots and the regular height and weight jazz. They really don’t ever tell us anything we don’t already know, in fact it is me usually educating the dr. about the latest visits to Chicago or U of Minn. Overall, we really like Dr Terkildsen (wink wink, Katie!) and feel a special connection to him because he was perceptive enough to get us down to a genetic counselor early in the game to get a diagnosis for Jayden. So, I am pleased to announce….no news, routine appointment!
August 22 Let’s get physicials, physicals….

August 21: Birdhouses


$1381.48! Whoever said teenagers were lazy and selfish have not met Erin, Erin, and Hannah! These young woman worked really hard and did a great job selling and decorating birdhouses. They were awesome and it was a great idea that generated a lot of attention! Thank you Curry family, for all your hard work and letting people into your home! Love you, girls!





Aug 12-14: Summer of 89

To date, this is my favorite think I do at work. Josh gives me free reign to take our incoming freshman and some student leaders to a camp in Lake Geneva the weekend before school starts. We do a “how to do high school well” kind of weekend. It is AMAZING. Friday, a few adult leaders drive up 8 student leaders and spend time training them for the weekend. Then, the freshman show up Saturday AM at church and meet their old junior high leaders who drive them up to camp. They are greeted warmly by the student leaders and then spend the weekend having fun, hearing messages, and worshiping. It is so rewarding to see these kids leave bonded as a class, excited for high school youth group!

Thanks to all who help make this weekend an awesome success! SHINE…class of 2015!

August 7: Our anniversary

Seven years ago, Justin and I got married. Funny, if you would have told me where I would have been seven years from that day, I wouldn’t have believed you. I couldn’t imagine doing this with anyone else. We make such a great team, and I believe as we grow together, we get stronger. We are more settled, and as the years pass, we know each other better….and what makes one another tick. I know how he is going to react, what pushes his buttons, and what he needs to feel loved. It is great…this growing old together thing. I think I have finally realized why God wanted us to stick it out and make marriage forever. There will DEFINATLEY be time we ALL want out, but if you just hold on, the reward is well worth it. I appreciate him more, love him more deeply, trust him with everything, and feel safe with him. He is a great husband and father, and I adore him. He even does the dishes, changes diapers, wakes up with the kids, can change oil on the car and fix things! Someone recently asked me what the most important thing was in a lasting marriage…I said grace. I also think a dose of “it’s not about me” goes a long way, and unselfishness is the biggest lesson I am learning to date…along with learning how to speak his love language.

Thank you Justin, for being you and being the best husband ever!

Sleep safe bed success!

Well it is official, over a year of trying, I got a sleep safe bed for Jayden. It currently is “in process” being made. It should be here in 4-6 weeks. Jayden wakes throughout the night, so for the past two years, he has been sleeping on our floor for safety reasons, and because it is easier to get him back to sleep. In light of IL being one of the worst states to help families like ours, they pulled through and covered the cheapest ($5,000+) bed for us. It is just like a crib, but it functions as a “daybed” during the day, and then when Jayden gets in, the sides fold up and it is an open top, twin size crib. Instead of rails, it has plexy glass windows so he can see out. We requested a hospital type bed that you raise and lower for the future, but because he doesn’t need it now, they didn’t want to pay $16,000+ for it. I get that. So, when Brooklyn needs a bed, I will just try to get Jayden’s “upgraded”. For the sake of sharing with other mom’s and dad’s trying to get one approved, here is the letter that sealed the deal for us. (After 3 denials with Dr. letters, I wrote my own).

Jayden Boyce

DOB:

RE: SleepSafer® Hi Lo: sleep safe bed

(included a picture of Jayden)

Meet Jayden Boyce. He is an energetic, loving four year-old with Sanfilippo Syndrome. He loves trucks, Bob the builder, and anything that comes with dirt. He boasts a smile that would warm any heart. He is followed by Dr. Barbara Burton, genetics at Children’s Memorial in Chicago. He attends year round school and receives speech, OT, PT, and special education. He also is followed at the University of Minnesota by Dr. Whitley, who also recommends the sleep safe bed.



MPS IIIA, or Sanfilippo syndrome, is a rare, genetic disorder with no treatment or cure. Over time, we will watch Jayden slowly fade away and instead of celebrating his driver’s license or watching his football games, we will be changing his diapers and pushing him in a wheelchair. Instead of attending his graduation, we will be attending his funeral.



Jayden has already shows marked regression functioning at 18 months developmentally. He doesn’t understand normal safety precautions and requires 24 hour supervision. To complicate matters, he has a VP programmable shunt due to an arachnoid cyst that ruptured in his brain June 2010. If he falls or hits his head, it is a serious injury. He can open exterior doors, open the oven door, refrigerator, and cabinets, climbs on furniture, and destroys anything in his path. According to the National MPS Society, children with Sanfilippo are extremely active and restless with very difficult behaviour. Some children sleep very little at night. Many will be into everything. Many like to chew: hands, clothes or anything they can get hold of. Sadly, language and understanding will gradually be lost and parents may find it hard not being able to have a conversation with their child. Many will find other ways of communicating. Some children never become toilet trained, and those who do will eventually lose the ability.



As children with MPS III syndrome get older, they begin to slow down. They become unsteady on their feet, tending to fall frequently as they walk or run. Eventually they lose the ability to walk. Life may be more peaceful in some ways, but parents will need help with the physically tiring task of caring for an immobile child or teenager.



Jayden currently sleeps on our floor, and has for the past 1.5 years. He wakes frequently in the night, waking up both myself and my husband. In order to keep him from waking his sister (who also has Sanfilippo), and wandering or escaping the home, or inducing bodily injury to himself or his sister, we have decided the floor is currently the only option. It is a serious safety concern for Jayden to be in the current twin bed we have for him in his own room. Bed rails don’t prevent injury, and prior to sleeping on our floor, he would fall out of bed, even with toddler bed rails, wake frequently and roam. He fell out of bed multiple times, sustaining injuries. His ability to wander and injure himself is extremely dangerous and could be fatal. He also could chew or mouth something and choke if he got out of bed. We have a documented ER visit from Jayden swallowing an item that is not edible. One Sanfilippo family, who lost their son at 10 years old, experienced a full week of their son not sleeping.

We are appealing the second denial of the sleep safe bed. The other options available like the canopy bed at http://www.pedicraft.com/canopybed.html is made of vinyl and plastic. It also comes with an enclosed top. Jayden hates to be confined and would feel trapped in an enclosed top. Because he is extremely active, he would be able to rip, push over, or get entrapped in a bed like the one mentioned. Therefore, this option is not safe, could cause injury, and is a hazardous option for Jayden. Although Jayden can climb, he has limited range of motion in the hip. When put in his sister’s crib, he can’t circle his leg high enough to get out and needs assistance. He is too long to sleep in a crib at his age, but a twin size crib, like the sleep safe bed is our best option.

Not only will the sleep safe bed provide us with a full night’s sleep and peace of mind, it will meet all Jayden’s special needs and prevent injury. It is made of sturdy wood so he will not be able to push it over. It has plexy glass windows so he can see out and an open top so he will not feel entrapped. It also has a hospital bed that adjusts, so as his needs increase, the bed will grow with him. It is long enough for him to sleep comfortably and prevents wandering. Due to his limited range of motion, he could not climb out, preventing falls and injury. There are also no gaps between the mattress and side walls. The safety rails on the SleepSafer bed up to 33 inches above the mattress and can be quickly rotated out of the way for easy access. It meets all FDA guidelines that a home-built bed would not. According to the FDA, [the] FDA received approximately 691 entrapment reports over a period of 21 years from January 1, 1985, to January 1, 20069. In these reports, 413 people died, 120 were injured, and 158 were near-miss events with no serious injury as a result of intervention. These entrapment events have occurred in openings within the bed rails, between the bed rails and mattresses, under bed rails, between split rails, and between the bed rails and head or foot boards. The population most vulnerable to entrapment are elderly patients and residents, especially those who are frail, confused, restless, or who have uncontrolled body movement.

The bed accommodates both his extremely active behavior now, and his limited mobility issues later, necessitating only one bed for a lifetime. The high lo feature will assist with getting him into bed at the lower level and keep the rail safety at optimum height. The high feature will assist with multiple diaper changes and dressing. The articulation of the head will help with cold prevention and assist later with feeding.

We are requesting the State of IL reconsider the sleep safe bed as the best and safest option for Jayden. SleepSafer® Hi Lo meets these needs. It may not give us a treatment or cure, but it will give us peace of mind that he is safe and give us more time to enjoy our short time with him.

Stefanie Boyce

Mother

Phone

Address