But in your hearts set apart Christ as Lord. Always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have. But do this with gentleness and respect 1Peter 3:15
Year after Year praying for answers and treatments for our sweetest girl. Dr. verbalizing frustration. This year After being told That there nothing more medically TCH could do we started to research centers over the summer , we decided to look into for a multidisciplinary center to care for her and develop a treatment plan for her. Tch had plans in place up until September then on October 1 decided there was nothing more they wanted to do for her.( meeting resistance all God closing those doors to further direct us the right direction) In September Emmalee was struggling with her nose being obstructed ( a daily battle) mouth breathing in the daytime tired , feeling poorly, and struggling to breathe at night. Over that 1st October weekend I found myself tears streaming face asking God to please guide me and give me the discernment I needed and to give me Direction of the proceeding steps to take... Trusting, surrendering and Walking in pure Faith we pressed on....
(visiting with some Dr.'s and a Pediatrician Friend God has blessed us with) With no help or plans in place we went to see her compassionate Immunologist. She always so tender towards em's care. She mentions to us how unacceptable this is and we need to move on to Denver for treatment. ( i had not mentioned my research efforts). Godly affirmation:). We then could see Gods hand over this and felt him steering our path. I then was given a spiritual nudge for a friend of ours who is a pediatrician and asked her for guidance and direction with her care. We visited an entire day going over the last 6 years of care and symptoms. What a vessel she was for us. This was on Tuesday October 5. She to did research placed calls to find the right center for ems care. She to felt strongly this was being overlooked and we needed other specialties involved. After much prayer ( with all of our prayer warriors on board at this point) we narrowed it down between Duke, Boston and Cleveland. Throughout the week with much Godly affirmations and prayer by Friday it was Cleveland thru and thru. During this time we had people mention things phone calls and events confirming Gods plan for us.My husband knowing this is what we need to do but concerned about how was questionable. God using me as an example of Trust and Faith to Him. I shared with him how it will happen we just have to press forward and how certain I was that this was Gods will. HE WILL PROVIDE wait and see it will happen. Walking in pure FAITH!!! I spent the next days on phone with doctors and nurses for m the clinic and had appointments set up no flight or arrangements by this time. During this time every where we went or people we encountered Friends family all had more affirmation and peace as a gift of clarity from God. It felt so smooth to be inside Gods will I could feel Him holding me all along the way. His presence and embrace wad indescribable. A friend would call with information people they knew in Ohio, return flight tickets at discount, round trip tickets for return visits transferred in our name, A gift of money as a discipleship from a Friend in a Bible study, Hair appointment to feel good while gone done as a gift of Love. All Gods action of love thru many of people.
People after people God is impacting and using to BLESS US and those around us. All for our girl to be provided the opportunity to breathe a little easier , have a management plan to feel good more days than ill, to receive care shes needed the last six years. Gods Glory is Mighty.....His love is powerful and moving and His Plans are always better than our own, He wants each of us to prosper...
CLEVELAND HERE WE COME.......OUR PATH Our Journey continues
And we Know that God causes EVERYTHING to work together for the good of those who Love God and are called according to His purpose. Romans 8:28
But in your hearts set apart Christ as Lord. Always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have. But do this with gentleness and respect 1Peter 3:15
Year after Year praying for answers and treatments for our sweetest girl. Dr. verbalizing frustration. This year After being told That there nothing more medically TCH could do we started to research centers over the summer , we decided to look into for a multidisciplinary center to care for her and develop a treatment plan for her. Tch had plans in place up until September then on October 1 decided there was nothing more they wanted to do for her.( meeting resistance all God closing those doors to further direct us the right direction) In September Emmalee was struggling with her nose being obstructed ( a daily battle) mouth breathing in the daytime tired , feeling poorly, and struggling to breathe at night. Over that 1st October weekend I found myself tears streaming face asking God to please guide me and give me the discernment I needed and to give me Direction of the proceeding steps to take...
Trusting, surrendering and Walking in pure Faith we pressed on....
(visiting with some Dr.'s and a Pediatrician Friend God has blessed us with) With no help or plans in place we went to see her compassionate Immunologist. She always so tender towards em's care. She mentions to us how unacceptable this is and we need to move on to Denver for treatment. ( i had not mentioned my research efforts). Godly affirmation:). We then could see Gods hand over this and felt him steering our path. I then was given a spiritual nudge for a friend of ours who is a pediatrician and asked her for guidance and direction with her care. We visited an entire day going over the last 6 years of care and symptoms. What a vessel she was for us. This was on Tuesday October 5. She to did research placed calls to find the right center for ems care. She to felt strongly this was being overlooked and we needed other specialties involved. After much prayer ( with all of our prayer warriors on board at this point) we narrowed it down between Duke, Boston and Cleveland. Throughout the week with much Godly affirmations and prayer by Friday it was Cleveland thru and thru. During this time we had people mention things phone calls and events confirming Gods plan for us.
My husband knowing this is what we need to do but concerned about how was questionable. God using me as an example of Trust and Faith to Him. I shared with him how it will happen we just have to press forward and how certain I was that this was Gods will.
HE WILL PROVIDE wait and see it will happen. Walking in pure FAITH!!!
I spent the next days on phone with doctors and nurses for m the clinic and had appointments set up no flight or arrangements by this time. During this time every where we went or people we encountered Friends family all had more affirmation and peace as a gift of clarity from God. It felt so smooth to be inside Gods will I could feel Him holding me all along the way. His presence and embrace wad indescribable. A friend would call with information people they knew in Ohio, return flight tickets at discount, round trip tickets for return visits transferred in our name, A gift of money as a discipleship from a Friend in a Bible study, Hair appointment to feel good while gone done as a gift of Love. All Gods action of love thru many of people.
People after people God is impacting and using to BLESS US and those around us.
All for our girl to be provided the opportunity to breathe a little easier , have a management plan to feel good more days than ill, to receive care shes needed the last six years. Gods Glory is Mighty.....His love is powerful and moving and His Plans are always better than our own, He wants each of us to prosper...
CLEVELAND HERE WE COME.......OUR PATH
Our Journey continues
And we Know that God causes EVERYTHING to work together for the good of those who Love God and are called according to His purpose. Romans 8:28
OUR STORY
Seven years ago My husband and I spent some time waiting to become parents and be blessed with the gift of Parenthood. The wait was not easy and far from smooth but with perseverance , grace & faith we were blessed with our Precious Emmalee Faith.
We were blessed beyond our dreams and prayers. My little Emmalee so amazing and special. I knew right away God had designed her for big things. She is truly a beam of "son"shine. Never caught without a smile or a giggle. She is a daily reminder of Gods strength in her. Faithful and armed with the spirit and perseverance.
Six years ago she started having breathing difficulties and infection after infection. At that time we had no idea that we would be where we are today. She has gone from Dr. to Dr. with multiple procedures, tests and surgeries. The last 5 years she has been admitted every year once or more.During this time she has struggled to breathe especially at night........
How it has all occurred and all she has endured.......
In 2004-2005 she was having difficulty breathing and fevers all the time we went to see a local ENT who recommended her to have her adenoids out. Of course I asked then about tonsils as well and was reassured that it was a greater risk for bleeding and she would be fine.She was admitted December 2005 and all went well. We returned home for another 4months of recurrent sinusitis, fevers, infections,and yes struggling to breathe. Then re-admitted March 2006 for sinus irrigation and nasl swelling(turbinates-tissue of the nose) obstructing her ablility to brethe. She continued with all these symptoms yet for another 7 months when we saw a new ENT Dr. At this time em was miserable with drainage coming out of her eyes, fever, still difficulty breathing. All treatments not completely effective. Antibiotics monthly, nasal sprays.......October 2006 we met Dr. McMeany , callous but good ( so I thought), where over the next 3 years would be my sheer growth in Faith. Primarily for the care He provided/ or not and all He put us thru. He doubted her need of his services. After surgery irrigation, biopsy and reducing the tissue in her nose He reported severe and impressive swelling and drainage. Over the next year she still struggled being sick,on antibiotics 30-45 days at a time home sinus rinses stuffy unable to smell breathe tired. Her nighttimes were always extreme. Most night sleeping upright on the couch. This year I had continually said to her team of Dr.'s
"She almost needs something to help her at night, she really struggles trying to breathe"
Once more Ignored and certainly not listened to. We pressed thru with the Grace of God. Calling Dr.s going to appointments looking for a plan to treat her and help her. We continued on until October 2007.......... Mcmeany decided it was time to open up her sinuses to help her and she had sinus surgery. All went well and we returned home.She did well. The couple of days at home were rough. She was uncomfortable and having complications. Calling her doctor and trying to explain her struggles. I was encouraged and had been over the months to just reposition her and stimulate her throughout the night. He stated to me" that it was uncommon and He had never encountered anything of the sort in all of His practice" Sweetest em was sleeping and trying to move air to breathe every breath was agnal. Without his support we were in an emergent position for her. We as parents opted to take her in. This was a blessing. She fell asleep while reading cloudy with a chance of meatballs. A book ill remember forever. This is when on monitors at the hospital and not at home on our couch .. They captured just what she had been doing night after night at home. She did not respond to breathing masks, or oxygen and they were going to have to intubate. Instead they stimulated her and she awoke. She was then admitted to ICU for apnea. Mcmeany showed up with apologies......
The last 3 years All of the same things continue without much medical attention or care for her. So night after night watching over her sleep. Some nights on her bipap machine others unable to use due to swelling of her nasal passages. Without bipap she gets about 50 min asleep a night. ......
night after night with each breath is a whistle a struggle
to be continued
