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Tuesday, July 26, 2011

My son, the nudist, and an update on Aiden!

Why is it that little boys just want to be naked? It truly cracks me up… More than one friend of mine has mentioned that their sons like to run around the house naked, not a stitch of clothing on. Given what we've been through with Aiden's medical issues, I suspected that this kind of behavior would pass him over, but… he proved me wrong the other morning. I walked into his room in my usual way, softly saying "Aaaaiiidddeeenn…" and turned on the light, grabbed his clean diaper and turned around to see him. To my surprise and horror, he had taken off his pants and had wedged them between the bed and the wall, and he had his diaper hanging on by a thread and had saturated his entire bedding ensemble. He looked up at me and said, "Poo-poo?" and I asked, "Did you, poo-poo?" and he said, "No… Pee-pee" and smiled the biggest smile as if he was entirely pleased with himself because he had prepared me for the worst case scenario and then revealed that it was in fact, just urine.
Thankful, I lifted him out of the bed, and got him cleaned up. I stripped the bed clothes off of the bed and threw them in the wash, and got my little guy dressed. All the while, I'm laughing at myself. I am thinking how new moms spend so much time and energy deciding which bedding to buy, only to have it demolished by their child. It's really not worth the trouble. Trust me.
And for the last week, I am still laughing about finding my son in that nudist state the other morning. So cute! I said, "Why did you take your pants off?", and he just said, "Pants?" Two year old amnesia. hahaha
Well the update for today, is that Aiden had a really good appointment with a new Neurologist this morning. He has had epilepsy since he was about 6 months old and the seizure activity has gotten pretty intense at times. I have many, many new gray hairs because of this amazing little guy. In reviewing his medical records, I attempted to prepare myself last night for this appointment. This was a new neurologist and she comes highly recommended.

There really is no way to tell a physician about the fear and pangs of loneliness I felt every day as I sat by Aiden's bedside in the NICU. There is no way to explain that he was all I did other than parent Sophie, he was all I worried about for months before and after his birth. I remember recapping for her the way that NICU experience was, that Aiden stopped breathing so many times, but that he Apnea'd and Bradycardia'd so many times I lost count. I was so terribly frightened that he wouldn't come home. ever... AND NOW LOOK at him! Aiden has defied the odds ((the doctors all said, "Don't be surprised if he never walks, or never talks")), and has blessed me with two of the richest and most exciting years of my life! And, after looking back over the information in preparation for this office visit, I reflected the anguish of that period of our life, but also I was deeply thrilled that I get to spend these wonderful moments with him. I get to enjoy his smiles, his hugs and even his sometimes nasty two-year-old attitude! I didn't expect that we'd ever be able to say that he's developing relatively normally at this age! I'm overwhelmed with gratitude for the health of my children right now.

So, after reliving one of the most terrible memories of my life, I did recall one thing that stuck out through all the hard stuff... I remember that every day, no matter how bad it got, I would lean on God and pray. I remember sitting by Aiden's isolette singing, "Jesus loves me, this I know, for the Bible tells me so, little ones to him belong, they are weak..." and I would always lose it right at that point and cry. I just didn't know what the light at the end of the tunnel would look like. So many questions lingered... He was SO weak.

I also remember so many sleepless nights where I would have to wake up every two hours to pump or to call the NICU nurses for a "status check" on Aiden. I would sit at my bathroom sink, in a fog of sleepiness and think, "Jesus, draw me close, closer Lord to you, let the world around me fade away" and I would worship him as I repeated this stanza in my head. I would tell him to give me peace as I learned more about Aiden's ongoing problems, and possible future diagnoses. I was thankful that I had God to lean on then, and I am thankful now, too.

Please remember that, no matter what you are facing, that God is there. Just close your eyes and ask him to draw you close, and he will. Trust me. He heard my raw cries and my anger filled rants and saw me through them... As I remembered this last night, it dawned on me... God doesn't do things that are bad to punish us, that's what the whole new covenant thing is about with Jesus' death and resurrection. He sent his son to live and die and rise again so that we would no longer have to bear our sin or our grief. There is no greater love in the universe than the love that God has for me. None!

And, when we got the news about Histiocytosis in January and though I didn't know how we'd get through that, I knew we would. And, as long as we just take things one day at a time, I know that we'll be okay. Aiden's Epilepsy isn't going to go away unfortunately, and Sophie will have to live with Histiocytosis for the rest of her life, but as for us, we will be okay. My mom gave me this little ceramic worm that sits on my mantle by the clock one week when things were especially trying. It has a saying attached that says "Inch by inch it's a cinch!" That's so true. If we take things one inch at a time, and we look at things with a little perspective, everything is a little easier to swallow. It's easy to get overwhelmed by life, but God GUARANTEES, that if we lean on him, we will find comfort and that he can see us through ANYTHING. Things may not always turn out like we had planned them to, but in my life, I'm glad that they haven't!

People have asked me, "How do you do it? How do you manage two sick kids?". Granted, there are challenges, but there are challenges with healthy kids and EVERYONE deals with SOMETHING. We just take it one day at a time and lean on God EVERY day!

Have a great day friends!

Tuesday, July 12, 2011

Fun, Guacamole, Aiden and a Worthwhile Cause!

Fun times...
So, last weekend, I went to visit the Amazing Mr. P and his family (my soon-to-be family). As usual, it was crazy times with five kids in the house. It was very enjoyable though…
Lots of fun and I had the kids take me out on the land and walk me around. Kara and Jonathan have such vivid imaginations. They showed me their hideouts, which are little spots where the trees overhang each other and make these little shelters where they can hide and play and be creative. They talked about all the characters they encounter in the forest and how their adventures take place. They described in vivid detail some of their adventures that involve wolves, cats, badgers and the like. It was incredible to see their little minds working so actively. They're not even eleven yet!

I went to the store on Saturday morning and got a bunch of groceries for the bunch. It was fun grilling out on Saturday! We also had my miracle guacamole.
Here's the recipe:
Miracle Guacamole
7 large avocados, cubed, peeled and seeded
1 Tbsp guacamole
2 limes, juiced and seeded
2 lemons, juiced and seeded
1 cup diced onion
1 cup diced tomatoes, drained
½ Tbsp Cumin
2 Tbsp Salt
1 Tbsp Pepper
1 Jalapeno, seeded, deveined and diced FINE
Combine all ingredients in a LARGE bowl and mash with a potato masher. This guacamole is amazing. If you seal it in an air tight container, you can even have some more the next day!

So, we got home Sunday evening, and had a real adventure on the way home. Aiden was so happy, he sang the entire way. We stopped at Applebee's in Brenham, TX for something to eat. We checked in at the front of the restaurant. I told the hostess, we will need a table for two, but we need to tidy up a bit first. So, we made our way to the restroom. There, I changed Aiden's diaper and got him cleaned up and ready to eat. We were both pretty hungry, but Aiden kept flirting with the server. She was a really cute girl in her mid-twenties. She was cooing and gooing at Aiden and he kept playing hide and seek with her. I was hungry, and just as my salad and Aiden's bunch of croutons and tomatoes made it to the table, I heard this awful sound coming from my son... It was #2 time whether I was ready or NOT! I had only brought one diaper in and that was the one I had used BEFORE we sat down. As I pondered... I thought, well they're not THAT busy, we could stay here and eat until someone gave us the 'stink eye', or I could just go get another diaper out of the trunk and go get him cleaned up again. As hungry as we were, I excused ourselves to the hostess and told her to please not give our table away, but the diaper bag was in the car, and I went out and grabbed another diaper and got him cleaned up. I put Aiden up on the changing table and did our thing. Just as I got him cleaned up, and was about to reach for the diaper, I realized that something wet was in my hair. I looked down, and saw my two year-old laughing hysterically at the steady stream spraying the walls and everything in his path. As I quickly covered him up, I realized just how many times I had said, "make sure you put something over that" to other new moms. I just never thought it'd be me. As I strapped his diaper on, I slipped his shorts (which were surprisingly dry at this point) back on his little bottom. I proceeded to grab a hand full of wipes, paper towels and whatever I could find. I felt like a blend of Cinderella and the little Wizard played by Mickey Mouse in the Sorcerer's Apprentice with mops a flurry as I was almost sure someone was going to walk into the restroom and be adequately disgusted at what was happening.
 I cleaned up the mess, had us each wash our hands...WELL... and we went to have our meal. Thankfully the meal was wonderful and the food was hot and tasty. With all that said, it was a terrific (and quite hilarious) trip home. It was awesome to see Aiden so happy and cheerful. I played Elmo videos on the portable DVD player in the car, which never hurts.  He stayed home sick Monday with a low grade temperature, which I'm praying was just because he was exhausted and/or teething. The moral of this story is, NEVER LEAVE THE DIAPER BAG IN THE CAR, ALWAYS COVER LITTLE BOYS DURING DIAPER CHANGES and ALWAYS PACK ELMO when a two year old is involved. This episode might have been upsetting to some, but to me it was just funny. It's like nothing little (like this) bothers me anymore. I have something pretty useful these days... it's called PERSPECTIVE. lol...
Aiden Update:
In other news today, we got some news... This morning, the woman from the PT/OT's office got to visit Aiden in day care. She said that she is still noticing (As I have been) that Aiden is still not moving as much on his right side of his body. It's disheartening, considering how much work we have done. It's like he's just not there yet.
Here's what she said, "Hi J, I wanted to let you know that I did get an opportunity to go to school to "peek" at Mr. Aiden cutie. I too noticed some asymmetry in his movements. This perhaps could be about him getting a bit bigger or about him trying to perform movements faster as I saw him on the playground with friends.   After I spoke with T, we both feel he would benefit from services again.  Unfortunately (due to the paperwork process), this means re-qualifying him, unless of course you would prefer to access private therapy facilities that are here locally.  I can provide you with that information should that be easiest for your family.  He otherwise was very engaging, friendly, and eager to perform the "big boy" skills.  Just let me know if you would like me to initiate a PT/OT referral again so that T and I can schedule a mtg. with you.  Take Care, D" I agree with her, that we would like to see him qualify for services again, but it's just a hard pill to swallow. I know the doctors said to prepare for him to have developmental delays, he's just been doing so well.

I will keep you guys posted as to the process with li'l man. I pray that he is really going to benefit from PT/OT again and hopefully make strides, and keep improving. I am praying for education, awareness and increasing ability in the disorders that both of my children have.
Histiocytosis (A Worthwhile Cause!) Update:
I also had the blessing of attending a Twitter chat on at #abcDrBchat today during my lunch hour. It was amazing!!! I am new to twitter. You can follow me @BuzzAboutJodi if you would like. I forwarded this twitter chat on to a few people in the effort to raise awareness about histiocytosis, and we just might get some folks interested in helping partner with us to raise awareness and to help with fundraisers. It's so exciting to be able to help. Most caregivers of histio patients have too much care giving to do, therefore the awareness aspect is the last thing they are able to help with. Thankfully, Sophie isn't one of the sickest, so I can help. I can be a voice for those who can't speak for the ones they love.

Tonight Dear God, I just want to pray for those moms and dads who have too many worries to watch and enjoy a TV show. I want to pray for the ones who sit by their sick kids' bed and watch them breathe just to be sure they don't stop.. I want to pray for those parents who sit exhausted after many long nights at the hospital or by a bed side, and the drip of an IV bag becomes like a second hand on a clock to them. Only there isn't any real time in their world anymore; other than the time it takes for the chemo or the life saving medicine to reach their child, so they can finally be sure that the next breath will come. I want to pray for those people who sit, months after an illness with pile of medical bills they're afraid to open, tears running down their tired cheeks. I want to pray for the people in our country who can't get the care they need for themselves or their children for whatever reason, and for the doctors on the front lines, who have a heart to find cures for illness. May you comfort them all, Lord. May you comfort them all right now. Amen.

Goodnight friends,

Thursday, July 7, 2011

Mid-Summer Update…

This time of the year (where Sophie’s with her dad) is hard on me. I will admit it. I miss her every day and feel like a part of me is missing. Luckily, she and I have been able to Skype with Aiden there and he’s gotten all giggly with her on the line. Also, she got to stay overnight last Friday before she went back down to see her grandparents and cousins for the second part of her dad’s time with her. On another positive note, I have been distracted by many things like work, wedding planning and hanging out with my li’l man. So, life is really good. And, for the moment, to my surprise, the kids have both been… wait for it… HEALTHY! I thank God daily for that.
I have been able to spend a lot of time with my fiancĂ© over the first part of this summer, which has been incredible. Being with him more often confirms our decision to marry and being around he and his four gorgeous children delights my heart and makes me look forward to the future in a LOT of ways. I can’t wait for our wedding next summer and the fun events that will surround our event. I can’t even begin to tell you how I am looking forward to being his wife. The amazing Mr. P’s WIFE! **sigh** And, mother to SIX beautiful, amazing, precious, intelligent, unique and God-filled CHILDREN! ME, who I thought might never have more than one child… and I’m going to have SIX! WOW!!!
I am going to be researching many many things over the next few months. Aside from all the wedding stuff, I am going to be researching blended families and finding out what works and what doesn’t. I am going to be asking everyone I know about how they keep track of scheduling, budgeting and organizing their homes with that many kiddos. I am completely open to your suggestions and look forward to hearing them!
Well… I guess that’s all for now! Have a great day friends!

Tuesday, July 5, 2011


This is going to be so NEAT!

I hope I can get your participation with this... It will be so cool...

I would like to put together a project for my upcoming wedding to the amazing Mr. P and I need your help! I need you to have your friends and family members email me their wedding picture. You know, bride and groom, for this project I'm working on. Could you please try to do this soon? I would also like their first names and their anniversary date. This will be so neat and VERY vintage in feel... I can't wait! Please join in the fun. You can email me at the picture or message me for my mailing address to send a copy.


I will update my blog after the wedding day with the results of the VERY cool project! I can't wait!!!

Have a great day friends,