Friday, December 21, 2012
We had a great time with Connor's Heroes at the Winter Wonderland and Holiday Ball event. Connor's Heroes is one of our favorite organizations that is doing fabulous things in the community and for families of children with cancer and other life threatening illnesses. Lisa Spickler-Goodwin's family has walked in the shoes of diagnosis, treatment and (thank God) victory over illness.
#TeamBolton has personally benefited from many of their programs. From decorating Mireya's room on the transplant unit both times (so beautifully) and supplying it with lots of games, activities and princess garb to keep her mind busy throughout her stay there. Their backpack and tote bag program provides families with meals, gas cards, grocery cards, and the backpacks for the kids is filled with an assortment of goodies to help get them through their clinic visits and hospitalizations. They were thoughtful enough to include a Mommy/Daddy pack for our stay with Mireya. They visited with us at the hospital and also loved and supported Jalen, our Super Hero Donor Big brother through both of his hospitalizations.
We've enjoyed several family activities sponsored by Connor's Heroes. We love their SuperHeroes and Sidekicks program. Each of the children has their own personal Sidekick they are able to spend time with doing a variety of activities. They all LOVE their sidekicks and spending time with them individually and collectively. It's such a blessing to have these types of activities we can do together as a family.
As if there is not enough excitement in our lives, we had a very frightful experience last night as we watched Paris go through an allergic reaction to a something she ate. Paris has no known allergies to foods or medicines, but immediately after she consumed a few bites of her meal, she began to complain about her mouth, throat and chest feeling like 'fire' was running through it. Within minutes she was experiencing discomfort and itchiness all over. I immediately gave her an allergy medicine because it was apparent she was having a reaction. Soon after taking the medicine, areas on her face, arms and body were red and covered in splotchy hives. We tried to apply something topically to the skin to help. It provided zero relief. At that point her discomfort was peaking and she began to sob. The allergy meds didn't seem to be providing any relief and in that moment I realized we needed medical attention. By the time we arrived for care, Paris was having difficulty breathing. She was very quickly assessed and given a steroid and a shot of epinephrine.
The EpiPen works quickly to reverse symptoms of anaphylaxis, within minutes the redness in her face and swelling started to subside, and in a total of ten minutes her body had regulated and she was feeling better. The difference a matter of minutes made. It's hard to determine exactly what caused the issue. The meal she had consisted mostly of things she has eaten many times before, but as the Doctor stated, your body can build up a sensitivity to almost anything. 'Something you've eaten regularly without issue, could have a totally different affect on you today. The most sensible solution is to obviously avoid that specific meal or food, but she will now have to carry an EpiPen with her at all times. She also has to complete steroid treatment for the next 10+ days.
It was very frightening to watch this unfold. I thought about all the the people I know with allergies to foods, medicines and insect stings. It's amazing how quickly your life is in jeopardy. I'm so thankful that we were able to go in and get the care we needed to address this very serious issue. I'm praying that Paris will never have to experience or go through another episode like this, but I'm glad we will be positioned to address it quickly.
Thank you Lord for your hand of protection....thankful, overwhelmed with gladness, and very grateful.
Psalm 121:4 Indeed he that watches over Israel (us) will neither slumber nor sleep
Saturday, December 15, 2012
line, but she's been really good about telling me when her dressing is shot, so I've been having to change it more frequently. Due to a shortage of pentamadine, Reya will start taking an oral medication Bactrim to prevent a strain of pneumonia called PCP, which commonly affects immunosuppressed patients.
Attending school was another point of discussion. Mireya will continue with Homebound instruction until the Spring. Originally we talked about the possibility of her physically going to school in January or February. After a lengthy conversation with her Medical Team, we all are on the same page and decided while it 'might' be okay for her to go back sooner, it's not worth risking her getting sick and her treatment being sidelined. According to the Docs, this cold and flu season is showing itself early and not only out of control, but with resistance.
I attended a Parent Forum through ASK about a week ago and learned about an awesome organization called Hopecam. Hopecam is working with Mireya's school to install software and a webcam in her class so she can be a part of the classroom experience. It will be great for her to participate in lessons as well as see and interact with her classmates. We're looking forward to being able to exist within the class through Hopecam!
We're back in clinic just after the New Year! Having our appointments stretched out is a good thing, but it's hard for us to go these longer stretches because we don't know what Mireya's body is doing. Sounds a lot like doubt, which is the opposite of faith...it's not, just a reminder that during these 'stretches' earlier this year, Mireya's graft starting failing. God is a healer and we are totally relying on him and counting down the days to total and complete victory. Continue to keep us lifted and pray over/for Mireya's body. All things are working together for the good!
Friday, December 14, 2012
I've sat here most of the day with a pit in my stomach as the ruthlessness of these events has unfolded. So much is going on in our world that is out of control. My heart is broken and aching for the families of the children and adults killed senselessly today. It's apparent that some sort of domestic family situation played out and the helpless victims were just going through the routine of their day. It's unimaginable. I cannot fathom being a parent who sent my sweet, innocent child to school only to be placed on standby without knowing if they are dead or alive. We've taken prayer out of schools. We need prayer more than anything. We have to cover ourselves and our families in prayer. There is madness going on all over the world. Hug your children and those you love and tell them you love them! My son got of the bus and I just held him close with tears in my eyes. No one knows the day or the hour....the Lord welcomed 20 little angels into heaven today. Keep these families lifted as they have to go through identifying and burying their children. No parents should have to bury their 5 year old child. The pit in my stomach has yet to subside, the heaviness in my heart will linger on. The pain in these parents hearts will last forever. I'm thankful for those that were positioned to quickly get children and themselves to safety. More information will become available as the story unfolds, but nothing will change the terror of these events. I'm praying for the hearts and minds of these precious little ones that witnessed such a tragic and horrific ordeal. There is a lot of damage control to be done. Console our hearts Lord, bring comfort in the midst of this the unthinkable.
Wednesday, December 12, 2012
#TeamBolton had a great time hanging out with Melissa Chase @ 103.7 (The River) for the Make-A-Wish Radio-thon. Mireya is a Make-A-Wish kid and our trip was one we will treasure forever. We loved visiting the station and sharing our story, our experience and our love for the Make-A-Wish foundation. We hope you had a chance to tune in and support this wonderful organization.
Friday, December 7, 2012
#TeamBolton had an amazing time with Q94's Kash and Lite 98's Kat Simons for the 36 Hours for Kids Radio-thon. Originally I thought the interviews would be simulcast on both stations, but we actually ended up doing two separate interviews. Both a little different, but all to support the Children's Hospital of Richmond (CHOR) and Children's Miracle Network. We loved being able to share our story and encourage listeners to become Miracle Makers.
|We promised the girls a train ride once we were done.|