The LORD said to him, "Who gave man his mouth? Who makes him deaf or mute? Who gives him sight or makes him blind? Is it not I, the LORD ? ~Exodus 4:11~
On this journey of motherhood the Lord has given to me, I will stumble, I will fall, only the Lord may lift me up in my inequities.
~Let your unfailing love surround us, Lord, for our hope is in you alone. ~Psalm 33:22
"Mamma, Can I just say this camera business is getting a little old!"
Wowza! It's been a while since I sat down and really updated everyone about Gussy! I know I need to be a bit better about this and I really will try harder! So much has been going on since Mr. A's Last surgery! The improvements he has been making are amazing! Glory to God! He is now able to keep his food in his tummy! Yay God! And he's growing now!!! Yay God!!!! Within weeks of being home his little puddin' head grew 4 cm!! 4 cm!!!! That is FABULOUS!!!! But even more fabulous then that, His little chest is sooooo much flatter than it was! Already!!!! His respiratory status has improved AMAZINGLY so!! As a matter of fact, (Are you ready for this?) he's doing so much better with his breathing that we have been able to, for now at least, stop using our night nursing!!!! YAY GOD!! We loved our nurses but it has been soooo very good for our family to be able to have our space again for a while!! We also made our way back to church last Sunday!!! Oh what a blessing it was to be fed spiritually!!! Praise God!!!
The day we have been waiting ever so (kinda, sorta) patiently for has arrived!!! Gussy got his hearing aids! WOW, WOW,WOW!! What a difference! As soon as he had them in, I said hello to him and he turned and looked at me in wonder! It was a precious moment that I won't forget any time soon! I wasn't able to get the first encounter with hearing aids on film but I was able to get a later, super cute moment on film! My cup runneth over y'all, my cup runneth over!
It seems as though the most common question we get is about Baby A's vision. We are thrilled to report that the improvements in that area are PHENOMINAL!! So good as a matter of fact that his therpists now say "He is such a good tracker!" If only the old therapists who saw him when his eyes were still fixed and dialted could see him now!! It's one thing that they don't even really work on now because he does it so well! YAY GOD!! Because it was always a matter of how his brain interpreted what his eyes were seeing, we didn't know what would happen. It can go one of two ways; that pathway will form or it won't. IT DID!!! YAY GOD! We are happy to report that his vision is in pretty darn good shape!! Glory to God!
We've also been working on fundraising for a very promising therapy in Los Angeles, California. It's a three week intensive therapy program called Cuevas Medek Exercise or CME along with Hyperbaric Oxygen Therapy or HBOT. You can check out our "Help Gussy Get Therapy" Page to learn more about our fundraising efforts and the therapies we are hoping to do!! We are so thankful for all of the support we have recieved! Financial, spiritual, and emotional! We are surrounded by amazing people who have truly showed us the love of Christ! Please keep praying for us! We have been so blessed by all of the prayers that are being said on our behalf!
There are times and circumstances in your life that, at one time, you would think would put you in a place where your prayers would be so detailed and long. I have found just the opposite is true for me. Most of the time I find myself just blustering on not saying a whole lot. I was listening to one of my favorite singers tonight and realized one of his songs is pretty darn close to a lot of my prayers these days. It is simple yet moves me in a way I couldn't explain, even if I were to try to attempt it.
Thank the Lord that He has given us promises in His Word that give comfort when I would other wise feel inadequate to come before Him!
In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. 27 And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.
I want to start today by telling you about what my heart is praising God for this beautiful Christmas season....
1. He is Good!
2. Although He has allowed more hardship, pain, and uncertainty, to come our way, He has also been blessing us ridiculously so continually.
New PJ's on christmas eve!
3. Our WHOLE family enjoyed a beautiful Christmas day TOGETHER!! HUGE PRAISE!
4. He has drawn us so much closer to Himself which makes everything more than worth it! If you have ever doubted that God uses hard times to clear your eyes, I would love to share my testimony of that with you!
5. He is good!
6. Luke is working!
7. He has surrounded us with truly selfless people. I am so grateful!
That flash is tripping me out Mamma!
8. Although our life at this time is uncertain, our hope in Him *is* certain!
5'400'586'946. He is good!!!
Thank you for letting me just get that out there. Whenever I have updates that aren't as wonderful as some, I always feel as though I am not getting across the fact that God is soooo very good!
I love my sister and she loves me! Such a blessing!
Such a fun therapy video!
So, it's not my favorite news but we are headed to Spokane on January 5th for surgery number three. Unfortunately, Mr. A's Fundoplication (tummy wrap) has failed. Which means he is now able to vomit and reflux. And sadly the news from his pulmonary doctor was worse. It probably failed a while back because his lungs have taken a beating and he has likely been aspirating small amounts for a while. His chest is "barreled" out and his diaphragm is flattened. This means he is working very hard to breath and if it is not taken care of soon his lungs could fail. The fact that he sweats a lot while sleeping already means he is working pretty darn hard at breathing which is also affecting his growth because of calorie burn verses intake. All of this is hard to take in but I am so thankful he said we could schedule for after Christmas!!!! Praise God! It was a special day for us all!
Thank you all for your continued prayers and support! We don't know how long Gussy and I will have to stay but we are praying he does well and we can be home bound again soon!
It's the little things in life that God blesses us with that just blow me away! This past week has brought some really fun and useful joys!
On Wednesday night I asked Luke to pick up Hand Sanitizer and Toilet Paper the next day after work because we were almost out of both. Thursday he calls me and tells me that one of the suppliers he delivers to, "Crown Paper", heard about Augustus and wanted to "help out". This is what Luke came home with! WOW!! He brought home a professional hand sanitizer dispenser and 6 huge bags to fill it, along with a case of small bottles of sanitizer, and two very big boxes of toilet paper, paper towels, and tissue! It never stops blowing me away when God provides small things so randomly! Thank you Father!
We were also very blessed by the Richland Police Department and Walmart this past weekend. A very sweet friend from church, who happens to be a police officer, signed our family up for the police departments "Shop with Cop" event. Thank you Officer Roe! The children got to go to Walmart bright and early this past weekend and have breakfast with the Police Officers right before they were each given a $100.00 gift card and an Officer to take them Christmas shopping for their family! They got to shop and then wrap their presents, and even sit on Santa's lap and get a present for themselves from Santa! It was such a huge blessing and so very fun for them! They are so excited to have all of these presents under the tree that they shopped for and wrapped! God is so good and I am just feeling very blessed by the out pour of love to our family this Christmas Season!
The "Shop With Cop" event was on the news and a couple of the littles were on :)
This sweet little girl is the daughter of one of the moms in my support group for children with HIE (Hypoxic Ischemic Encephalopathy). She needs your help! This won't take you long and it would mean so much to them! Sweet little Maggie is not doing so well and all this family wants is to take her home to meet her family in Illinois. Please, after reading her story, follow the link and nominate her for help in every way they have posted! ! It costs you nothing and would mean the world to them! Please, if you have been touched by watching Augustus' fight, please help them in this small way! Help Maggie!
Maggie's story taken from her page.....
Maggie Roberts is a 7 month old baby girl who is not long for this world. Due to complications she was born 6 weeks premature and sustained severe brain damage. Her short life has heart-breakingly been lived from surgery to surgery, connected to tubes and wires 24 hours a day. Her mother and father have given up everything to stay by her side and help her hold onto life, but she has been slipping these past months.
Maggie's Parents, Houng and Derek Roberts, are originally from Rockford, Illinois but moved to Ogden, Utah when Huong was offered a teaching job. With Maggie being born so premature due to a placental abruption, her mother Huong had to undergo an emergency cesarean, and then was put into a medically induced coma to help her heal from it. She underwent a hysterectomy to save her life and suffered organ failure. Thankfully, Huong was only in a coma for a month and a half and has recovered better than expected, but they will now never be able to have children. Maggie is their first and will be their only child.
Presently, Maggie is at home in Ogden, Utah with her parents, but they do not have any family here and their family cannot afford to all fly out to be with them during this challenging time.
All that her parents want now is to take her home to Illinois and surround her with family and love during her first...and last Thanksgiving and Christmas. Due to her delicate condition she would not survive traditional transport. What we are asking for her and her parents' behalf is help in finding her a way home. She needs to be transported in a specially equipped plane or helicopter. Airlines will not allow her to travel with the amount of oxygen she will need.
She has been denied by Make A Wish Foundation because she is under the age of 2 1/2.
We have sent multiple emails to media sources and entered her into the Home for Thanksgiving contest being presented by Ellen at http://www.ellentv.com/
We encourage you to contact media, enter her into the contest on Ellen's site again, and any other resources you may be aware of in helping us find her a specially equipped transport home. Even if you email Oprah or share this with your friends...you are helping.
Although we are not requesting monetary donations, if you would like to donate to assist the Roberts family it is graciously accepted. Paypal donations can be sent to: HelpMaggieRoberts@gmail.com
100% of All donations go directly to the Roberts family.
Moses said to the LORD, "O Lord, I have never been eloquent, neither in the past nor since you have spoken to your servant. I am slow of speech and tongue."
~Exodus 4:10~
I was told about Pastor David Bell by a friend while in the hospital with Augustus. It was so incredibly encouraging to see what God has done in his life! I remember crying when I saw him with his beautiful wife and four beautiful children. Not just any cry, but you know, the "whole face cries" kinda cry. What an amazing testament God has made of him! Against what life told him, he is married, he has a beautiful family, and he is an active *PARTICIPANT* in God's work! Many would say he is "the kind" that we as Christians need to serve and minister to. It is true that we should serve those with disabilities, but he turned his face toward the living God and decided he would serve and minister to us!
So, I thought I would share my morning beat down with you all.... You're welcome *giggle giggle*
Few individuals have felt the crushing blows that have besieged David Ring since birth. He was born to lose. On October 28th, 1953, in Jonesboro, Arkansas, David was born with Cerebral Palsy. Orphaned at age 14, he was cast about from family to family with nowhere to call home. He endured constant physical pain, humiliating public ridicule and constant discouragement. Yet in the face of these seemingly insurmountable obstacles, David emerged not victimized…but victorious!
Life was worse than hopeless to him until his relationship began with Jesus Christ who taught him self-respect and acceptance of his physical challenges. To most, physical challenges of this magnitude would prove to be a tombstone. For David Ring, this coming of age was and remains a milestone. You’ve never heard a speaker quite like David Ring. Although difficult to understand at first, you will soon find yourself captured by his quick wit and warm personality.
Whether giving a motivational message at a sales convention, or inspiring church leaders, David always focuses on an individual’s need to conquer the personal challenges an adversities of life. As you hear David Ring, you will laugh…and cry. You will be amazed at his triumph over odds. You will be moved to consider your own life. As one who has not been stifled by his physical limitations, he clearly stakes his challenge to everyone. “I have Cerebral Palsy–what’s your problem?”
As a nationally known speaker since 1973, David shares his story with over 100,000 people each year at churches, conventions, schools and corporate events. He has been featured on numerous occasions on several nationally televised programs.
David’s book Just As I Am, (Moody Press, Chicago, IL) tells about his heartaches and victories, and addresses the central theme of his life: “Triumph Over Odds.”
David and his wife, Karen, make their home in Nashville, Tennessee. They are the parents of four children, April, Ashley, Nathan and Amy Joy.
The LORD said to him, "Who gave man his mouth? Who makes him deaf or mute? Who gives him sight or makes him blind? Is it not I, the LORD?
~Exodus 4:11~
I set out this morning to create a new blog for updating everyone on life with Mr. A, which I have been horrible at and do apologize! I came here to my blog "Is It Not I" and tears flooded my eyes as I read the top which stated one of my all time favorite verses. It was such a blatant reminder to me that He knows my name, He knows my life from beginning to end. You see, this verse was always a favorite of mine because whenever I read it I saw the great power and strength of our God! I always imagined God using a stern, loud, Father, voice with Moses, here. One of those "how dare you question my plan" voices! I always thought it was so great! That is not the reason it brought tears to my eyes this time and not the reason it re-inserted it's self back into my life as a strong voice in my head....
Daddy Love!
Mr. A's first outing to the Pumpkin Patch!
He knew before I was knit together in my mother's womb that I would be the mother of Mr. Augustus. "WHO makes him deaf or mute??" "WHO gives him sight or makes him blind?" "IS IT NOT I, THE LORD!?!? Our God loves us so much He gives us encouragement before we even know we need it! What a MIGHTY God we serve, AMEN!? I want to explain a little further the significance of this verse in our life. You see, Mr. Augustus has been diagnosed as deaf and with Cortical Visual Blindness. This has been a hard diagnosis for me and one I have not spoken of too much because of the pain I feel when I think that my sweet baby boy has to deal with these invasive medical interventions without the use of those senses to ease that discomfort. But what a comfort to be reminded of Who chose these things for Mr. A! I don't know a whole lot at this point of my life. Tomorrow is uncertain for us. But this I do know; how dare I question the goodness of God's plan for my life, for Baby Auggie's life, for all of our children's life! This IS His plan for us. What Satan would love to use for evil, God WILL use for good! To this I am certain.
You need a kiss!
For this reason I have decided to keep my "old blog" instead of creating a new one. God knew what life would bring and He set us up accordingly. From now on I will be updating about Baby A. here.
Sister Love time!
I have prayed and thought much about what I would say when I updated everyone this time. There are great days and days that are hard to stay afloat. I have days that I recognize the ever present Lord so powerfully in this place, and days that I focus more on the enemy of my soul and what he is trying to accomplish. However, I praise God, Who's Joy is my strength, for reminding me of the truth that is my future and the truth that is the great adversaries future!! These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world. ~John 16:33~ My future is bright! His is not. OUR GOD HAS OVERCOME THE WORLD! Can I tell you that if you have Jesus be of good cheer, Your Savior has overcome every trial you have or will face?! Can I tell you that if you do not have Jesus to turn from your sin and repent for there is a Great and Mighty God who loves YOU and sent His only Son to pay the debt for every wrong doing you have ever and will ever do?! This is a gift! No payment necessary! He wins and when you have Him, YOU win! I am not sure of much, but to this I am sure!
Masked bandit stopping fro some love!
Oh, how I love you!
I mentioned that Augustus has been diagnosed with hearing loss. We went to the Audiologist today for an in depth screening to tell us if his hearing is something that can be corrected or if it is permanent. As disappointing as the results were, we are ready to accept them. Augustus is completely deaf in one ear and very severely impaired in the other ear. Now, that being said, he also showed that he had a lot of fluid in his middle ear. So we have been referred to an Ear, Nose and Throat doctor. Once the fluid gets drained we are praying that he has some degree of hearing return. The audiologist told us that with the severity of his hearing loss it is unlikely that his hearing will return to normal but it can definitely help bring some of his hearing back. They were going to fit him with a hearing aid today but decided to wait until he sees the ENT so he can be fit with the correct settings right away. We have been learning sign language and Praise God, it seems to be coming naturally to everyone in the house, so far. We were told about a video series called "Signing Time" that we will be ordering soon. It is suppose to be fun and easy to learn from. Praise! I am also very excited to have learned that there is a "Community center for the Deaf" here, and that most of them offer what is called a "Deaf Mentor", which is a mentor who comes to your home and teaches your family ASL (American Sign :Language). So Praise, Praise, Praise! God always provides! Another huge praise in this area is that Augustus has made such amazing improvement with his upper extremities! The therapists says that his movement with is upper extremities is normal looking and actually seems quite good! I was so happy to hear this because I thought the same thing and it is sometimes difficult to get Doctors and Therapists on the same page as you. One reason this is such a huge praise is this means he has a much better chance of being able to use sign language himself! I have been praying so much that if he is deaf God would give him use of his arms and the ability to sign.
Couch Potatoes!
CVB (Cortical Visual Blindness) is a type of blindness that does not affect the eyes but is a result of a brain injury. I was not aware of this prior to Mr. A, but the whole brain is used in the seeing process as opposed to just one part that sees. There are many pathways throughout your brain that play a part in the seeing process. If there is damage in the middle of one of those pathways it interrupts that seeing process. This means a few things. 1. Augustus can see some things. 2. The brain *can* form new pathways if it so chooses. And 3. Therapy and stimulation of these pathways can aid in that process. His eyes are good, it is an issue of how the brain interprets what the eyes see. The great news is that he has already made some huge improvements with seeing. Praise God! We live in a time with many bright and stimulating toys and videos so we have tools all around us! Praise!
I love you too Mr. Glow Worm.
The next thing we get many questions about is Augustus' ability to eat and will he ever eat. The answer in short, is we don't know. We have found some wonderful therapies and we are very excited about the prospect of good results but all we can really say is that it is in our Father's Hands.
I love all of you so much and I can not even come close to expressing how much your love, support, and prayers mean to us! I promise I will try my best to update you more often than I have been. I also want you all to know that questions do not offend or upset us in any way. We are more than happy to answer any of your questions. So many of you have been emotionally invested in our journey and we want you to know that we appreciate you all so much!
Could therapy be any funner?
There are days when all I can do is fall to my knees and beg God for mercy. I am in no way strong, courageous, or good, but I serve a big God! If you gain nothing else from watching Augustus' journey from death to life, I hope that you know that there *is* a God and He is mighty to save!
