Yes, this blog has officially just woken up! Almost a full years nap, it's time to get busy in this special space in cyberland...
Below is the full video I had promised of Griffin from when he was 2 (I had posted a 15 second snippet on Instagram a few weeks ago)... he sings so sweetly towards the end, but the most hilarious part is throughout the whole video when the conversation repeats itself as such...
Momma: "Griffin, are you tired?"
Griffin: "No mom, I just woke up! K?!"
It's literally like 11 pm and he had been up since 4 am, slept a couple of hours and decided to "wake up"! This was very common during this stage of being two. But I love the video mostly because of his talking... which we prayed and worked so hard for... it's a treasure to us for sure... (warning: this is over a 6 minute video that only we may consider pure cuteness and worth watching every second over and over - - - so if you skip it, we won't be offended!)
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Hunter kicked it Boy Scout style at the Pinewood Derby race, bringing in a 2nd place trophy!
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Griffin turned a whole hand worth of fingers, five in all!
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Lil' Pip made his 3D debut and made us all gasp "He's real!"
Well, I kinda live the real factor every day - but I still gasped...
I can't stop staring at him.
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A "See ya in 2 years!" from his cardiologist made turning 5 even sweeter...
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A Griffin health update...
Since my last post a year ago (which as I re-read, that day floods back like a violent storm of emotions...) we have came through a lot in Griffin's health. Through his team of doctors, we tested him with a CPAP machine in a second sleep study, this brought his numbers down significantly! Enough for them to say no tonsils removed, no jaw surgeries needed, as long as the CPAP continues to keep his airways opened & working... & it is! As far as his thumb/hand... we're still praying about the direction we will be taking... & second opinions are in the work.
Heart/Cardiology: This past week Griffin had his yearly check-up. They ran the routine tests and took lots of pictures. He was a champ as usual and other than having a mild birthday sugar hangover, he cooperated very well. Our appointment took twice as long as they usually do, all the while each person we saw kept saying "Everything looks great!" I kept thinking, really? Then why are you re-checking and rescanning and taking so long... but by the time we saw his cardiologist at the end of the morning, it all made sense. She said that Griffins heart has not changed one bit since last year! Not one! The tests showed no increased stress on his heart, no size difference, nothing! This is HUGE! The heart defect that Griffin has, although mostly repaired when he was 4 months old, leaves his pulmonary valve not working at 100%. Therefore his heart has to work harder to get the blood where it needs to go. By the time he is in his late teens, he will have to have this valve replaced. For now, it is completely healthy enough to live life as normal. The effect of this is Griffin does not have the energy endurance like most kids his age and over time this could become more evident, could. As his heart works a little harder over the years they'll see slow thickening of the walls and a slight change in his heart size. I say slight because every year it will be minor, so very minor. But the fact that there was NO change is a HUGE PRAISE! It means his tiny body that we worry so much about not gaining and growing like a "normal" kid his age - well it's kicking strong and doing over and above in the heart department! So his cardiologist gave him a "See ya in 2 years instead of 1" card and gave this mom a boost of confidence as far as the heart is concerned!
Craniofacial: This past October we had a day long appointment where we saw the entire team that it takes to monitor Griffin's craniofacial needs. Plastic surgeon, orthodontist, genetics, psychologist, speech, language, ENT, oral surgery and a few more I've forgotten. Overall the outlook is good - one of waiting - which we like! There is no rush for Griffin to have any major facial surgery or jaw distractions at this time. He is eating well, continuing to progress on target in speech and with the help of his CPAP at night, his airways are staying open and allowing him to have rested and healthy sleep. We walked away from that busy day with appointments for one year and a few follow-ups that are soon approaching. Griffin has shown an unwavering hypernasality in his speech which is leading them to believe there is some deformity in his soft palette. We will be pursuing non-invasive testing to evaluate and officially diagnose. This is nothing that needs to be surgically repaired immediately, as it doesn't effect his breathing or everyday functions. We appreciate our Craniofacial team at U of M for their approach to these unique issues. We are in no rush to alter Griffins appearances to reach a level of "normalcy" that some people unfortunately feel is necessary - & our team leads the way in this thought process as well. Any procedures done in the future will be done for the single purpose of quality of health - as Griffin grows older and an independent adult, if he feels more cosmetic surgery is necessary for his well being, that will be his choice. The definition of normal is not based on looks for us - but rather on reaching the best quality of health to function and live a quality life... this is quickly becoming a passionate point for us as Griffin gets older.
Speech/Language: Griffin is thriving in his preschool setting. He attends 5-half days, riding the bus and charging through the challenges! He no longer receives speech/language therapy on a weekly basis at school, as he has exceeded their expectations and qualifications to need this service. They monitor him once a month along with the physical and occupational therapy. Although the school system sees no need for extra therapy, we are in the process of setting up private therapy through U of M. From their medical perspective, there are always barriers to help Griffin prepare to jump, especially with his struggle with hypernasality... and we 100% agree. This has been the blessing of switching to U of M, many of my gut feelings in a lot of areas over the past 5 years have been affirmed through his team... for that I am grateful. With this additional therapy, it will help him be ready for KINDERGARTEN this fall!
Ear/Nose/Throat: We finally got the official diagnosis within the past 6 months that Griffin is completely deaf in his left ear. We have honestly known this for awhile, but they would never write it in stone because the physical makeup of his ear is so small, they felt their testing was inconclusive over the years. So this diagnosis changes absolutely nothing. We are noticing Griffin independently working to adjust himself to hear what's going on around him better. Within the classroom, he is responsible for bringing the teacher her microphone she wears that projects her voice through a speaker system, helping him (and the other average hearing children!) to hear her better. This has been a great aide for him to stay focused in a busy classroom setting.
Weight Gain: We are happy to announce that Griffin is consistently staying above 30 lbs!!! He may hover at 30.2, but we'll take it! It seems like 29 was the only number the scale knew how to give us every time he jumped on. His nutritionist has not been concerned, even though he is so small, he has maintained his own curve. Which means he follows the outlined curve of an average sized child his age, just way at the bottom of the graph. But the good news is he is finally on the graph!!! 3%percentile!!! Our family made a huge lifestyle change last May which has proven a huge success in helping him gain and maintain (& helping mom & dad gradually lose along the way). We strive to make sure that what goes in Griffins mouth on a regular basis (90% of the time, with plenty of splurges along the way) is of full nutritional value and substance. Whole, real, clean foods. There was a small uprising for 2 days when cereal was completely banished from our house, but it didn't last long when smoothies, homemade breakfast burritos, bacon and egg sandwiches and yogurt parfaits replaced the once was. Plus, they know that cereal isn't gone forever as long as grandparents are in the picture & Valentines day surprises exist!
Thank you for your concerns & prayers over our family, especially Griffin as we continue on this journey with him. Your support is always overwhelming and empowering...
What I know for sure...
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These 3 boys (plus one unseen) make my heart swell... My Hunter is becoming a little man more and more each day, he is so insightful, generous and sensitive... it is my priority every day to make sure I look directly in his eyes and hug him tightly and tell him how important he is and how much he is loved. This feeds his soul more than healthy avacados ever will. And just how he is filled, he fills others the same way. His words of affirmation to each of us in this family are astounding. Sometimes they're whispered, sometimes they're written... but they flow easily and freely without hesitation. Even Little Pip is being affirmed as he grows in my belly. On the days that Hunter is over the top rowdy, not listening, carrying on like a typical 7 year old... I dig deep to remember all that I just wrote above. It's hard work being a parent... but the focus and energy is worth it when their actions of love come through.
My Griffin is turning into a big boy, his toddler tendencies lingered a little longer than usual with tantrums and moodiness, but he is quickly learning to express his feelings and do so with manners and self control. I've had to change my parenting styles with him about as many times as I change my underwear (daily if you're wondering)... his personality is complex and beautifully out of this world. He asks me out of the blue at least once a week "Is being a mom the best job ever?" With you as my son - absolutely buddy. His humor and quirkiness, creative mind and artistic abilities, along with his cuddling can just about make us explode with gratitude.
Now that boy looking straight on at the camera... the bearded one... he is a gift from God to help hold me together. That's why I love this picture so very much - in it's selfie glory - because it represents my earthly rock perfectly. My blessing of a husband - the very best friend I've ever had - the one I look forward to each and every day. The fact that the boys & I are looking off at who knows what, but my husband is zeroed in on the target... that represents our life lately. He's focused, completely tuned into God's desires for this family, pulls my crazy worrisome self back into play and keeps us grounded in what matters most and leads us to wherever our ship is sailing during this chapter of our life. Seriously, my heart swells - literally swells - that my boys have this man to look up to as a father & watch him as a husband and amazing follower of Christ. I am a grateful girl.
Thanks for reading my update... my not so transparent self is building courage to open up weekly... my prayer is that I don't have to wake this sleeping giant up yearly. The question lingering in my mind lately is "If you could do anything you know you wouldn't fail at or be judged doing... what would it be?" This blog, my friends, is at the top of the list...
Well, that's enough transparency for now... have a good day!
