Friday, January 18, 2013

Gussy Update!!

If you haven't seen the pattern yet, let me enlighten you. I have started nearly every post since Gussy's homecoming with.... Soooorry. Yeah, I'm the worst blogger around. To be a blogger I believe writing is necessary. Do correct me if I am wrong there. I would love to hear it. If it makes you feel better, I have some fantastic pictures to share! All sorts of news to share. Some news was great, some was hard to swallow. None the less, I have news!

On that note, to start us off on a good note again; here, look into this light (Summer video)
 Oh, how cute my little Gussy was swimming away like a big boy at the kid pool! He's scowling but I promise it's the sun in his eyes. He LOVED being at the pool! All of the children did! It was a much needed relief from our winter of total lock down!

So let's start, shall we? First the blessings. Oh, the blessings!! I can't say I'm to that little happy place that special needs parents seem to get to, that says "I wouldn't have in any other way". I am, however, so, so, so, so, so, so, so, so, so ,so blessed by the joy that Augustus brings this family! I love my sweet baby boy just the way he is, but I have to tell ya, I would absolutely change his injury status. God knows better than I. Praise Him for that! I have fully come to accept what is. I've moved forward with joy that my baby boy is here, alive, and still making progress. Praise Jesus! I would still change it all.

I can't even come close to expressing the toll it has on a person to watch your child, whom you fight so hard for, love so much, and cherish as the heritage from the Lord he is, fight to survive on the bad days.  I wish I was a writer of that skill, but unfortunately, I know I am not. Simply put, the toll reaches far. My health is not what it was by any stretch (Blog for another day). Emotionally, worry is part of my every day life. I hate it, but truth is truth. I would love it if you all would lift that sin in prayer for me. I can't seem to utter the words from my own lips. So here I am, asking you, my fellow followers of the great I Am, to bear this burden for me.

Bear you one another's burdens, and so fulfill the law of Christ. Galations 6:2... See? You're bound to it. Ha!

Wasn't I starting with the blessings? YES! Blessings!! Oh the blessings!

Gussy isn't just giving little smiles these days. He's a HAM!!! Oh my, how he loves to ham it up! He has a FANTASTIC sense of humor! He loves rough housing! He's laid back! He's always happy! He fits perfectly in the Tannehill Home!

 We have a home! Yes! The Lord has blessed us with our very own home! He blessed us with wonderful temporary housing via our wonderful church. Now, He has blessed us with a home to call our own! Praise Jesus!!! We even get out to mow the law sometimes!
I know, I know, he's cute. Gussy too ;)

Gussy made it to his first birthday with a big ol' Hallelujah! And ya know what? He tasted cake just like the rest  of the little one year olds running around. And? He LIKED IT!! Yes, he liked it! Mmmmm Hmmmm!! He even got to play in some spaghetti. Maybe it wasn't the ol' 1 year old spaghetti face shot, but by golly, he had fun!

We've continued to be blessed by caring people.  We were blessed with an IPad by a sweet family that just wanted to bless us to bless us! It has been AMAZING, AMAZING, AMAZING!! It proved things that we suspected but now we have PROOF! HA! Take that!!! PROOF that Gussy can pick his family members out when asked! In other words, he can follow instruction appropriately for his age!! PROOF that Gussy Hears!!!!! PROOF that Gussy sees well! PROOF, PROOF, PROOF!!! HA. Ha. Ha.! Take *that* again!

And Just a little tidbit of information for all you "Nay Sayers" out there. He didn't hear, and now he does. How do I know? Watch this little video of Gussy getting his hearing aids....
This was taken the day he heard Mama's voice for the first time. He was in SHOCK and WONDER! My baby boy had very significant hearing loss. Period. Now, He hears perfectly! Just ask anyone in the house who has tried to sneak past the sleeping baby. It does NOT happen! Healing. Chalk up to what you will, but me? Gussy? Gussy's angel? We know better.

 Brotherly Love!!! Oh how my baby boys love each other! Bef Frens y'all! Bef Frens!
All the children are fantastic with Gussy. Nothing weird there! That is a HUGE blessing! HUGE! Lily can change an oxygen tank, do a tube feeding from start to finish, and knows exactly what to do if he starts droppin' sats and choking.  She can read his monitor and knows what each number means, where it should be, and where it should not be. How's that for homeschooling, huh?  God has blessed me with an oldest that is incredibly intelligent and has a heart of service. This is the only reason I shower. I am so proud of the way my family has pulled through tragedy and taken up the task given them. They are my best blessing.  And? They're all a bunch of screw balls that are fantastic to be around!

Dancing with sissy to some great tunes!

 We finally got hooked up with a really great neurologist. He knows his stuff and is a leading expert in kiddos just like Augustus. As a matter of fact, he's one of the top in the whole country. His name is Dr. Stephen Glass. He has finally given us a diagnosis that fits every aspect of Augustus. Extra-pyramidal Cerebral Palsy.  We had Spastic Quadriplegic CP. That did not fit. Gussy isn't spastic all of the time. He changes.  It is a rarer type. 15-20% of CP kids have this type, if I remember correctly. It means some really fantastic things and it means some harder to swallow things. 

Fantastic, cause you know, I like startin' on good stuff....

His cognitive ability is there!! Thank you Lord Jesus!! That is *the* thing we asked of God in those first few days; he would survive, know how very much he is loved, and be happy. If he can do nothing for himself the rest of his life, please, dear Lord, let him be there cognitively.   We already felt he was there thinking wise. Turns out children with this kind of CP generally are there cognitively.

This brought another concern to mind that I brought up with his Doctor. It sounds awfully frustrating to know what you want, think like any other 18 month old, but not be able to make your body cooperate. He said that is the real kicker. In 30 some odd years of practicing and treating children with EPCP he has yet to see a child that is not the happiest child around. Also, a huge sense of empathy. It was like this man, who had just met Augustus, knew everything there was to know about him. Through it all, Gussy is the happiest kid around. He loves life. He smiles constantly! Happiness radiates off of him. And? Empathy is something that I had discussed with a different doctor. He is VERY concerned with anyone's pain or tears. He goes from big, hard, spastic movements to soft, gentle, stroking with anyone that is hurt or crying. If I am crying (not that I do...ever), he stops pulling my hair (his favorite), and gently rubs my face.

Turns out there is something that happens chemically in the brain that causes this in children with this type of injury.

Now, call me crazy (others do), but it sure does seem like God knows what He is doing, huh? Think about it.  He has major gross motor skill issues, we believe he's all there cognitively, and he happens to have a chemical reaction in the brain that makes him perfectly fine with it. He sees the beauty of the world, unlike the ugliness that most of us notice. Have I mentioned he's a hero of mine?

What's the bad that comes with it?  There always is, isn't there? (Is that really my outlook now? When did this happen? Ooooooh yeah).
Gross Motor skills are not common of this EPCP.  Balance is a major issue. Talking takes some MAJOR gross motor skills. So there it is. One dream handed to me with a big pretty bow and one dream smashed with an anvil. I still hold onto the hope that like Wile E. Coyote when an anvil hits him, my dream will pop back up all rubbery and new like in the form of a walking, talking little boy.  If not. I stand ready. God has plans. I KNOW mine suck in comparison. Rest in that.

On to fundraising... We have been blessed with $2500! I have not updated his thermometer but it's there. Praise God huh?! His Neurologist thinks our best effort is put into feeding therapy and adaptive equipment and devices. I agree at this point.  We purchased that fancy (over priced!) Bumbo thinkgy over there. BEST PURCHASE EVER!!! Life changing for him!!! He can sit on the floor with brother and sisters seeing things from his level!! HIS level! It was worth every single penny, even if it was a LOT of pennies! Support is absolutely key for Gussy!   Feeding therapy is next on the list.  We have enough raised now to do this therapy. In other words, I am going to stop fundraising for now. I praise God for the love and generosity of every. single. one. of. you!!! We may still pursue an intensive physical therapy at some point but feeding is #1 priority right now. His Doctor believes he can learn to eat. If there is ever a major emergency that leaves us without power or a g-tube, Gussy can starve to death. I know that is harshly put, but we must face facts. Feeding therapy is VERY important. He needs to learn to eat.  
The good and bad news?  Good, one of *the* best feeding therapists in the nation is in Kent WASHINTON! KENT!! She has an extremely high success rate.  Good news? We have enough funds raised to do it now!! Bad news? She's in Kent, Washington. Yes, I said that was good news didn't I? For success he needs to go 1-2 days per WEEK. That is more than hard for our homeschooling family of 5 young children. It is HAAAAAARD! So here goes.... Please pray that God will guide us in wisdom to figure out how to make this possible. Resources locally are non-existent. If Gussy is going to learn to eat, it's going to be in Kent. 3 1/2 hours away Kent.

 One last prayer request. Studies show that children who do not sit unassited by 2 years of age have a much slimmer chance of walking. It's just a silly study but ya know, it sure would boost my spirits if Gussy learned to sit up by himself by 2... Six months to go. There you have it. Our very long Gussy update.

We still have days like this.....
But the days like this....
Grandpa's picture
Are getting a whole lot closer together. 

Living in His Mercy,


  1. Have i told you lately that i love you? Oh, my. I think of the strength that God had given you to be Momma to that sweet little boy, and I just melt! God is so so so good to us, isn't he? And today when I was feeling like such an awful mom, it was a blessing to me to read about your struggles. To put mine into perspective. Is that silly? Here I am blubbering all over my phone... I love hearing about how God takes care of each of us in such a visible way. I will be praying for everything to go smoothly for his eating therapy. And for sitting. Thank you for sharing.

  2. Love this post! Praying for all of you :)

  3. Awww Andrea, I love you back! You are such an encouragement to me. actually, both of you ladies are! I'm always amazed when I think about the awesome people has put in my path to pull me through the struggles. I mean, how many people have a list of heroes the size of Texas? Me, this lady right here! Long story short, you all are awesome!