Sunday, October 17, 2010

Our days, 2am Drives, A Big Step, Dear Friends, & A Favor

It seems quite difficult to find time to blog lately. I think of many things through the day which would make great blog posts and updates about Mason and our family, but....................actually getting those thoughts into the computer is a task that doesn't seem to get completed. Many days I will start a post and get interrupted only a few minutes into it, only to leave yet another unfinished post and my thoughts then forgotten. As I often say, "there's a time and a season for everything"! So, someday I will be able to blog and journal more about my thoughts and our life's journey. (ie: this post has taken me 3 days to write.)

As for now, my days are quite busy with Mason and Ammon while the other kiddos are at school. For 2 1/2 years Ammon went to a special needs/ autistic full day preschool four days a week. He was even picked up and brought home by a bus. He loved it and I loved it!! He got the structure and routine he needed and I didn't feel guilty about taking care of Mason and not giving Ammon what he needed.

This year is OUR DAYS are different. Ammon only goes to school in the afternoon. The only way he could have gone to a full day preschool in our district is if we continued him in the autistic program. But Ammon just is not typically autistic and has never been given an official diagnosis. He talks, cuddles, and is very social. He needs to be with other children who talk and are social, thus he is attending a Life Skills kindergarten w/ other children like him and they also get time during their day with the normal developing kindergartners. Ammon is still delayed in many of his cognitive skills, his attention span is about 30 seconds (most of the time), and he has enough energy to light up New York City (all the time), but my hope is to eventually mainstream him. Needless to say I love Ammon more than words can express (just as I do all my kiddos), but having he and Mason home together all morning can be quite crazy and busy!!! They love and hate each other at the same time, and I'm right in the middle of it!!

Thank goodness for Sammi, who is still living in our basement and helping me as much as she can. Sometimes she will talk Ammon into running errands with her in the morning to give me a bit of a break. She also helps me right now during those "bewitched hours" after school of homework, running kids to baseball, scouts etc , and preparing dinner. I am so grateful to have her here with our family!

During that window of time when Ammon goes to afternoon kindergarten until the kids get home from school Mason and I enjoy a much needed nap. This is very precious time I must say! Mason will only take a good nap with me next to him, so this forces me to nap too. I'm not complaining though, I love it and need it. What more could a mother ask for than napping next to her miracle child who has beat the odds of life thus far! And since Mason is still a horrible sleeper at night and I'm the only one he wants during those wee hours, we both need it for our health and sanity. So if I don't answer my phone, you'll know now, that is out precious nap time!

This leads me into the next item on my post title........2AM DRIVES. Mason, as you all know, has NEVER slept through the night. My hope of a new healthy heart solving this problem was shattered by his high doses of steroids to help w/ rejection. Do you know the top 2 side effects of these nasty things? Inability to sleep and irritability!! This is not the case for all kiddos on them, but definitely for Mason. He will wake up deliriously screaming and not even know why. Lately, even though he's on lower doses of the steroids now, his late night screaming (almost like he's having horrible nightmares) has been so bad that the only way I can console him is going out for a 45 -60 minute drive! Then we will come back and I will lay w/ him either on the couch or in the famous big red chair (I used to post about when he was really little) for the rest of the night, but sometimes neither of us go back to sleep. Crazy times! "This too will pass" right?

On a more positive note, Mason has made a BIG STEP in his transplant recovery. He was able to skip a whole week of transplant clinic and blood draws! Going from twice a week to every other week is a HUGE sign that Mason and his new heart are doing very well. Dr E, at Primary's, is very pleased with how well he is doing. His ECHO's look great, his lab work shows perfect numbers (his Cyclosporine level has finally found a 'happy spot' too), his lungs sound and look great, and his blood pressures have been much better. We hope Stanford's transplant team is just as pleased when we go visit them next week!

Our family continues to have friends, family, and neighbors serve us and support us in many different ways. My gratitude is SO GREAT for each and every act done for us, prayer said for us, and concerning positive thought sent our way! Not too leave anyone out, but specifically this last week there are some very DEAR FRIENDS who have touched my heart. I do believe that our Father Above knows our needs and many times places friends in our path exactly when we need them.

Cecil and his wife Melina put on an absolutely fabulous fundraising golf tournament for our Mason! I know it was a lot of work. We truly appreciate your friendship and all you've done for us! (I will post some pictures of the "Mason Monster Tournament" soon.) With the stress of unpaid medical bills this tournament was a 'breath of fresh air'!

The other one is my dear friend Laura. The other morning I was out on a run with Mason and Ammon (If you can call it a run pushing them in a double stroller, a total of at least 100lbs? It's more like a jog/walk!!) Half way through our run I ran into Laura out on her run. She changed her course and ran with us all the way back home. (Laura and I used to run together a lot before we had 9 kiddos between the 2 us! It's been years since we've run together.) She said to me "I follow your blog diligently Sum, but I know many times you are sugar coating your life! How are you really?" Ok, that's all it took, and I broke down in tears. I told her that life can be very challenging. I poured out my hidden thoughts and emotions to her about how many days I'm very overwhelmed. It was so good to let it all out. Thanks for being there for me Laura when I needed you!

Last but definitely not least, I have a FAVOR to request of all our friends, neighbors and family.

*PLEASE, lets us know if you or your kiddos have been sick and will be having contact with Mason. That way we can make a decision on whether we need to change our plans and stay home.

*If you or your kiddos have spent time with him recently and end up getting sick, let us know as well. We understand that you may feel well one day and sick the next. This is in no way to make someone feel bad, but it helps give us an idea of what it could be if he does end up sick. For a regular kiddo, no biggie. But for Mason this will save him multiple blood draws (and tears) as they run labs to figure out what type of illness he has. So think of it as doing Mason a favor and please just give us a heads up.

*Also, if you happened to get the FLU MIST and will be in contact with Mason please let us know so we can stay away for a couple weeks. We have received a letter from cardiology stating that because the Flu Mist is a LIVE vaccine it could be contagious to Mason. Therefore, we are to stay away from those that have received the mist and ask those that will be in contact with her to get the FLU SHOT instead. *In fact, anyone who plans to be around Mason at all this winter please go get a FLU SHOT!!

Thanks for your understanding. We hate asking this of others but we know of the major impact this could have on Mason's health and in all honesty his life.

Until the next post.......hopefully sooner than later, Mason sends LOVE to all his fans and followers :)


The Simmons Family said...

Summer... you are amazing!! I don't know how you do it all.. but you do! I'm so happy to hear that Mason is thriving with his new heart.. I only wish I had some sleep advice.

Kyle and Alli said...

Oh the sleep issues!!!! I FEEL YOUR PAIN!!! Grant is the same. I can't tell you how many times I have jumped in the car at 2 am to drive all over in hopes of getting him to sleep a little, and totally praying that I don't get pulled over because in my middle of the night stumble, I realize that I am not dressed as much as I should be to be in public! :) I pray that this gets better and Mason's side effects can start giving way to trust and better sleep. We are starting Melatonin with him this week and it is making some progress, so perhaps it would benefit Mason as well (if it doesn't counteract one of his many many other drugs!) I am so excited for Mason to be reducing the frequency of his visits....that has to free up some time for you too! Hang in there....soon enough this will all be a memory.

The Davis Family said...

Ohhh.... how I loved switching to bi-weekly clinic visits. We actually just changed to monthly clinic visits! It's a lot easier with the blood draws. I am glad you found time to write another blog! I love reading your updates (especially now that Mason is doing so well). I can't believe you also find time to run during the day. You are a great Momma!

Jennifer said...

You are amazing. I hope you know that. On days when you are tired and overwhelmed and feel like you can't do it CAN'T do it all...but what you CAN do is enough! I was at TOFW this weekend and Virginia Pearce spoke and she said, "Survival IS success". I love that!

Mindi D said...

Good for you to ask those 'favors' of your family and friends. It shouldn't be a problem at all for them and will help you a TON!! Also, my two older kids just got the flu mist, should i be concerned for Libbi? I hadn't heard anything about it being a problem, and her and Mason are way different so maybe i'm ok.. just curious :) Let me know! Thanks and good luck and glad life is 'ok' I'm sure it's tough on you, it's ok to break down, you've earned it :)

Jamie said...

We should get together for the 2 am 4 month old loves car rides and I usually resort to them every night. I have a little route that goes past your neighborhood, actually ;) I'm glad to hear that Mason is doing so well!

Keri said...

OH, Sum. Wish I could take Mason for you once a week at 2am. So sorry that you are overwhelmed and underpaid :) And undersleeped. :)
So glad Mason is doing so well...cept that sleep thing. I love seeing recent pix of your family and can see all the love that is there. I miss you, Summa gir.