Some past updates about Ezra- March and April 2005

Hi, these are past emails we had sent out.
God is so good, it is so comforting to reflect on His goodness and ALL HE HAS DONE!

March 22, 2005
Hello Friends and Family,
I am writing to send you all a much needed update about our precious son, Ezra. I apologize for taking so long to send out an update! Life with three kids and being the wife of a youth pastor really doesn't leave a dull moment in my day! So today I write, to update and fill you all in on how wonderful our Lord is and how gracious He continues to be in our lives.

So, where do I begin?? Well today, I awake to the noises of Gabby and Ellie, full of energy, to say the least, ready to start the day by asking for juice. I then get out of bed to kiss my sweet boy, whom only hours previously received a kiss from mommy when I was giving him some more milk to eat and changing his diaper, usually around 2 am. Due to Ezra accepting the increase of milk volume over the past weeks, he is now on a new feeding schedule. His schedule is eat for an hour and then three hours off of his feeding pump. This new schedule allows for more times out and about. It has been very special to be able to take Ezzy out to meet so many people that love him and have been praying for him. Almost every day we cross paths with someone, some we know, some we do not, who express their love for Ezra and inform us of their prayers for our family. These little chats always warm my heart and encourage me. One very special "meeting" for Ezra was meeting his Auntie April, Uncle Jeremiah and cousins, Jordan and Judah. Meeting these precious family members, who are missionaries with NTM and are now home on furlough from Papua New Guinea, has been a blessing and to say the least, brought on many tears of joy as Auntie April, Edwin's older sister held her nephew for the first time. Another joyous time for our family was bringing Ezra to our church here in Missouri for the first time last Sunday. Tears of joy and thankfulness of God's grace in our lives overwhelmed many of us that day. God is good and because of His goodness have we been able to share Ezra with so many people.

A few weeks ago, when I was changing Ezra, I heard the most beautiful sound. My son let out his first cry! In my excitement, I called Edwin out of the other room and wiped Ezra's back, as I had done before and again, Ezra let out a cry! Days went by before we heard this wonderful sound again. And now, on a daily basis, Ezra let's us all know he does not like to be exposed to the cold air!! His cries have become more frequent, though not too often, but have even woken me up in the middle of the night when his tummy was bothering him! We are not sure what this all means in reference to how Ezra's brain activity is at this point . He does have another EEG schedule in the beginning of June and so we will see what, if any, improvements have taken place. Now, as far as I am concerned, Ezra has improved greatly and daily I see more alertness, responding to voices, startled at loud sounds, crying in response to pain or discomfort, and overall, a growing baby. :) He is now just under 8 pounds.

On March 31, Ezra will be undergoing a surgery to have a new G Tube put in. This G Tube will be a Button G Tube, which will be closer to Ezra's skin. The one he has right now has a long tube and a big feeding port. The surgeon was waiting for Ezra to grow and be ready to handle the Button type before putting it in. Because he is responding well to his feeding schedule, he is now ready. As of next week, Ezra will have 5 feedings through the day and none during the night. This will allow more sleep for mommy! Yeah to that!

At his last appt. at the University Hospital , Auntie April was able to come along. We sat in a room for four hours and in that time where able to be seen by many different doctors checking up on how Ezra is doing. We were encouraged to be told he is doing well. I met with a physical therapist and after having a mini lesson on how to best stretch Ezra's hands, arms, legs, and feet, I have been incorporating these exercises into my daily schedule, mostly whenever he is being changed. Soon Ezra will be starting a First Steps program, which will allow me to have therapists coaching and instructing me on how to best take care of Ezra. After meeting with the neurologist last Wednesday, he informed me that the movements that I was told where seizures, were in fact, not seizures! This was a huge encouragement. Ezra is now down to one seizure medication given twice a day. He still has seizures, but they seem to be minimal. Today I took Ezra for some blood work. Because of his brain injury, his brain does not make a certain hormone needed for proper kidney activity. His levels have been OK, but due to some signs I have noticed, I decided to get his blood checked and today we found out that his potassium levels are high and we need to go again for more blood work and then take whatever steps the doctor sees fit to do for Ezra. I am praying that this can be controlled by a new formula we may have to put Ezra on. We will update you when we know what we will be doing for him.

My days seem to fly by, which is something all mothers of young children experience! :) And when the end of each day quickly arrives, I praise God for allowing our family to enjoy Ezra for one more day. My sad days come, mostly just for everything to be "made right" for Ezra. I am only human, but am so thankful for a loving and patient God who gently reminds me of His goodness and the blessing Ezzy is for our family. My prayer is for contentment in whatever the Lord has for my son. He continually reminds me that His Word is living and active and that I can confidently approach His throne of grace, where I receive mercy and find grace in my time of need. What complete and perfect rest!!

Again we thank you for being used by God as instruments to encourage and bless our family. We have put new pictures of Ezzy and the family on our church web page, thanks to our wonderful Senior Pastor! Check it out at www.1stbc.org

Ways you can specifically pray for our family:
Pray for a successful surgery for Ezra's new G Tube on March 31st
Pray Ezra learns how to suck and therefore eats with his mouth
Pray his potassium levels go down
Pray for wisdom as his parents in decisions for his care
Pray for wisdom in teaching our girls about God's goodness in Ezra's life

We love you all and look forward to hearing from you. I know this was a long update. Thank you for taking the time to read it and for all the prayers for our Ezzy man!

Enjoying God's Grace,
The Borbe Bunch

April 9, 2005
Our Dear Friends and Family!
As I sit and write to you all, little Ezzy man is sleeping soundly in his front baby carrier that I have on. I enjoy having him close to me, while having my hands free at the same time! :) Many of you have written in regards to wanting an update on how his surgery went on the 31st and so in reply this email goes out to all Ezra's loving supporters!
First of all, THANK YOU again for all the love and prayers for our little man. Your outpouring of love and support has and continues to amaze and bless us all. Ezra's surgery went well. Daddy and Mommy were both able to be there holding his hand during the whole procedure. He was sedated during the surgery and woke up after all on his own, crying and very hunger, ready to eat. He hadn't eaten for 8 hours and he had no problem telling us his belly was ready for food! :) We are adapting well to his new "Mic Key" Button. This new Button still needs to have a 7" tube attached every time he eats. The beauty of this Mic Key Button is that the 7" tube can be unattached when done eating. This makes dressing and holding him much nicer and I even forget he has a Button under his clothing! :) He seems to be having a little bit of a tough time tolerating his latest volume amount of formula. So I have been working on finding an amount that suits Ezra's needs for hunger and comfort. Feeding him with a G Tube just doesn't give him the choice to stop eating. I have to watch his signs he gives to know when he has had enough.
He has started his Occupational and Speech therapy. I have enjoyed receiving helpful instruction on how to stretch his tight muscles and "wake up" his little lips and mouth, with the goal of having him eat with his mouth. Just the other day, after his first Speech Therapy, I tried one of the suggestions of dipping his pacifier, which I am continually sticking in his mouth, into some lemonade powder. Well, that definitely got a reaction! Instantly he puckered up and sucked on his tongue! I was so excited! I stuck my finger in and wow, he was strongly sucking on my finger. I cried out to God, " I KNOW You have the power to heal my son!" How amazing to feel the life behind his definite suck reflex! He smackes his lips together and sucks a bit on his bottom lip!
Please continue to pray for his sucking to become stronger and stronger and that he will learn to relate a full belly with sucking to achieve it. I give him his pacifier when I start feedings to help him associate the two. God is so good and has given me a boost of energy to keep giving him every opportunity to suck. He now has his pacifier attached to him all the time! :)
Stretching his tight little muscles is often tough work, but God gives me the patience and directs my steps as I go about my day incorporating his therapy into whenever I have a free moment. Ezra's hands are in a fist most of the time, but lately he has been opening them more and more on his own. His therapist has ordered some thumb braces to wear on his hands to train to open his hands more and more. He has been reaching in front of him, which is a huge achievement for Ezra. He has been focusing on my face and responds to the voices of his family by looking around until he finds where the voice is coming from! All these milestones for sweet Ezra are wonderful reminders that God is gracious and His mercies are new every morning!
My prayer is for Ezra to learn to smile in response to all the voices he hears all around him full of love. I am so encouraged at all the improvement we have seen in sweet Ezra! Another praise is that his potassium and sodium levels have been great since being home. When we first brought Ezra home, he was diagnosed with having Diabetes Insipitus, a result of his brain not producing the hormone needed to control his kidneys to maintain safe levels. But since being home, we have not needed to put him on any special formulas. I am so happy for this and now since his levels have been consistently been OK, we now only have to go once a week for blood work. Yah!

Again we thank you all from the bottom of our hearts for you love and prayers for Ezra. Daily I am so encouraged and as I go about my day, I often stop and remember that those that love us so much are uplifting me, probably at that very moment when I need it.

In His Amazing GOODNESS,
The Borbe Bunch :)