The Gant Girls are quite some funny girls. Hannah, the oldest is 12 and even though she looks girlie she is anything BUT!! Or so she says. Hannah loves to play soccer, softball hang out with friends, go to church and absolutely LOVES church camp! Hannah loves getting involved and helping others. Two years ago, she raised over 16,000 dollars for Hike For Heroes and had the Hannah Turner Barefoot Race put on at the Crosby High School. There along with Crosby, Texas, she broke the Guiness Book of Records for the most people to run a race barefoot across a football field. Having fun all the while, not realizing the full extent of what it meant to military families across the country to be recieving money raised from one small town girl. Hannah has a heart of gold and has suffered and gave alot not only for others but for her sisters Sam and Olivia who have medical conditions which limit us from everyday things like the mall, church, the favorite pizza place or the local hangout with friends. She not only understands their conditions, but she makes sure that everyone around her does as well. I have truly been blessed to have someone so young be so grown up....
Samantha is a 4 year old BALL OF FIRE!!! She LOVES everyone and lets you know that she loves you and you should love her because God says so.....Two years ago, Sam became sick with an infection in her ear that led us to a hospital stay for a week and the diagnosis of Osteomyletis in the bone in her ear. Since then, it has been an uphill battle to keep her well. Another diagnoses of immune disorder, IVIG treatments and still not up to par. In the process of surgery for tubes, surgery to replace a busted eardrum, constant pain in the legs and numerous tests she was diagnosed with Non Hodgkins Lymphoma a year ago. Easy fix? You would think...Thhis type of cancer is very common in children, very common in children with immune disorders YET we are still today battling treatments and cure. We have lived through horrible days and absolutely heavenly days. But regardless, each day is a blessing and I thank God he chose me..
Little Miss Olivia...she may be small in stature but boy does she fight like the LSU Tiger!!! Olivia was born premature and was other than little, healthy....or so we thought. At around 9 month checkup, her pediatrician noticed that she was not developing mentally, physically and that her head was growing off the chart. After a trip to the orthotics place, and a referral to the neurologist we thought we would simply get a helmet to reshape her skull and all would be well.....Don't ever count your chickens before they hatch.....MRI of the brain at the neuro office showed that Olivia had a vascular malformation of the brain. Further testing determined that it is inoperable. What came with that.....Possibility of seizures, blindness, aneurism, stroke or death....It was decided that she would be monitored every few months...Routine MRI..NOT...The next MRI led them to do an ultrasound because something in her neck looked different so we now have discovered that there is a tumor on the paratiod gland in her neck...what comes with that you may wonder...deafness in the right ear, trouble swallowing,trouble chewing,. So in the course of from the time Olivia began seeing dr for specific things in her short life, we have now turned 2 in June have extended our diagnosis list, have been to several drs before we found one actually able to TEST and TREAT Olivia and we found them in Denver, Colorado. Olivia at the age of 2 is an autistic child with an inoperable vasuclar malformation, a tumor on the paratiod gland, external hydrocephalus(too much water on outside of brain),developmental delay,L-Carnatine Deficiency,Seizure Disorder,and Celiacs disease...
So in the course of almost two years, and numerous drs., we have become patients now at National Jewish Hospital and Denver Children's Hospital in Colorado. The drs there work with our drs here to make sure that the girls are getting the treatments they need, the meds, the care and most of all....answers. We can do nothing but thank God everyday that we were blessed to have been sent to Colorado, to have had the drs with not only love and compassion but with knowledge, understanding and wisdom from God be able to treat these precious girls and not only give them chance at life but give them happiness in the process. We never know what tomorrow holds. We are so humbled when our children become sick or when things become tough but it seems that we should be humbled from the beginning...God GAVE up his son.....He DIED so that we may live, so then why is it that we as "children of God" we cannot find it in ourselves to let God take care of all the daily mess, trials and tribulations and we just sit back in AWE of his works and miracles...
One of my dearest friends said the other day to me...."I wish I could just cure Sam' I thought the same thing....ME TOO!!! But I know we can cure Sam, and all the other sick children, parents, grandparents, aunts and uncles..We cure them by claiming it in the name of Jesus, setting the burden at his feet and LEAVING it there...My babies are whole, my babies are cured...in Heaven..whether I get to see that miracle in person on this earth or not, I believe it already exists..who am I to take away God's marvelous works all because I want an instant fix....How dare I try to do God's job, I know i can't hang on my own and He knows that as well..
Thank you to all who continously pray for my family, who show support whether it be monitary, physically or spiritually. Your generousity will never be forgotten and I know that your riches await you beyond the pearly gates. You have touched me and my family in a way that can never be forgotten and I will forever cherish every moment of everyday. I will forever thank the many that I know and that I don't for being the light of God in this dark world. I am so glad that this world is not my HOME!!! Love to you all and God Bless you and yours!
Kelly Gant
Wednesday, October 31, 2012
Saturday, July 28, 2012
A Note from Kelly
So for the many friends and family who may or may not know.....Monday morning I will embark on a journey with my two little ones. Both girls are being admitted to National Jewish Hopsital in Denver, Colorado. Sam is being admitted for immune disorders and will have an oncologist consulting with the drs and Livi is being admitted for exzema and will have neurology consulting. This has to be so far, I think one of the hardest things I am having to do. I never thought that as my life was being laid out in God's plans would I be battling with drs on treatments for my sick children, battling the children for not being able to just let loose, battling with each bedtime ritual, could this be the last....It truly is amazing to see God's wonders at work in my friends and family around me, in my babies who suffer and in perfect stangers whom I have never even met....In all of my many years of life, I can honestly say I have never felt closer to God in the aspect that from Monday on its just me and HIM...I KNOW that God answers all prayers and I know that it was Him who has made this trip possible. Months ago, the trip was going to be me and Olivia and we were originally supposed to leave in May. Had a few drs appts with Sam, had some talks with drs and God saw it fit for Sam to make the journey. God knows what tomorrow holds and no matter how great Texas Childrens is known to be, the only TRUE HEALER is God! He is the only dr I need to be relying on. I received a call about a month ago that not only was Sam accepted but that she would be admitted the same day, receive treatments as well and I would be able to be with the girls one on one. Livi receives treatments and testing from early morniing to late afternoon and Sam from late afternoon to late evening..
Now the hard part....what does each day hold? Only God can answer that...As we set out on our journey I can honestly say I am afraid....of the unknown, of the changes that could be for the better or worse but I do know that God has brought me to this place, He has seen fit to entrust His children to me so I guess the least I can do is see fit to trust him with everything in me...I remember as a young child I use to have a necklace that had a small mustard seed in it. And I remember the story of how if we have faith just enough as the size of a mustard seed, thats all we need...That doesn't seem like alot and being a child of God that almost makes me feel ashamed that the size of mustard seed is all I can put into God. I have truly seen wonders of God's work and I know the wonders of God will prevail daily.
I ask that if only for a brief moment throughout your daily lives you would please say a prayer for my babies..if youre listening to KSBJ at high noon, or praying at the dinner table or during the Sunday sermon(when Bro Robin is Praying not Preaching!!) that you lift my girls up to Jesus, ask Him to take the wheel, ask Him to touch the drs hearts. I would also ask that you please pray for Hannah. She endures so much being the big sister and for the next couple of weeks she is getting a much deserved and way overdue break! Even though she's tough, she will be away from home...having fun NO DOUBT! but being a loving child and care giver for her sisters, I know she will worry about them. I ask that God give her peace to know they're ok, grant her the wisdom to grow closer to Him through this experience. I think often about how much Sam talks about Jesus how he's not in the "cage" anymore..LOL she loves to hear the story of how He is Risen! That speaks alot to me, I told my mom the other day that Sam talks alot about seeing Jesus, how He's always with her......Then it hit me if my 4 year old can see Him, why can't I? Why do I expect Him to actually be sitting at the dinner table when I get home when He's been walking with me all day...learning through the eyes of your child is no better way to learn.
I will try to keep updates on the blog at least every couple of days and try to post small updates daily on facebook.. Again thank you to everyone who has touched our lives, in no way have they been small ways! I appreciate all the prayers and love and support soo much and you may or may not ever understand what it means to me to have prayer warriors claiming my babies healing in Jesus' name but from everything I have.....it's appreciated. Love to you all and may God Bless you all who read this, who pray and who pass it on.
Kelly
Now the hard part....what does each day hold? Only God can answer that...As we set out on our journey I can honestly say I am afraid....of the unknown, of the changes that could be for the better or worse but I do know that God has brought me to this place, He has seen fit to entrust His children to me so I guess the least I can do is see fit to trust him with everything in me...I remember as a young child I use to have a necklace that had a small mustard seed in it. And I remember the story of how if we have faith just enough as the size of a mustard seed, thats all we need...That doesn't seem like alot and being a child of God that almost makes me feel ashamed that the size of mustard seed is all I can put into God. I have truly seen wonders of God's work and I know the wonders of God will prevail daily.
I ask that if only for a brief moment throughout your daily lives you would please say a prayer for my babies..if youre listening to KSBJ at high noon, or praying at the dinner table or during the Sunday sermon(when Bro Robin is Praying not Preaching!!) that you lift my girls up to Jesus, ask Him to take the wheel, ask Him to touch the drs hearts. I would also ask that you please pray for Hannah. She endures so much being the big sister and for the next couple of weeks she is getting a much deserved and way overdue break! Even though she's tough, she will be away from home...having fun NO DOUBT! but being a loving child and care giver for her sisters, I know she will worry about them. I ask that God give her peace to know they're ok, grant her the wisdom to grow closer to Him through this experience. I think often about how much Sam talks about Jesus how he's not in the "cage" anymore..LOL she loves to hear the story of how He is Risen! That speaks alot to me, I told my mom the other day that Sam talks alot about seeing Jesus, how He's always with her......Then it hit me if my 4 year old can see Him, why can't I? Why do I expect Him to actually be sitting at the dinner table when I get home when He's been walking with me all day...learning through the eyes of your child is no better way to learn.
I will try to keep updates on the blog at least every couple of days and try to post small updates daily on facebook.. Again thank you to everyone who has touched our lives, in no way have they been small ways! I appreciate all the prayers and love and support soo much and you may or may not ever understand what it means to me to have prayer warriors claiming my babies healing in Jesus' name but from everything I have.....it's appreciated. Love to you all and may God Bless you all who read this, who pray and who pass it on.
Kelly
Tuesday, July 17, 2012
The Next Step of the Journey!
The bake sale went fabulously! Thank you so much to all who baked items and those who came out and donated. The finally result is in and we raised $1,407.21. The totally cool part; the hotel bill for their stay came out to be $1,407. I love getting to watch our God provide in amazing ways! Please continue to be in prayer as the family raises funds for the plane tickets. I pray that God continues to open doors for the girls and that they will get some much needed answers on this trip. Not only do the girls need prayers as they go through their various treatments, but please also say special prayers for Olivia as she has never flown before. Kelly is very concerned about how Olivia will handle the flight, thus the need for Hero to be on the plane with her. Thank you so much for all your support and prayers, they mean the world to Kelly and her precious family.
If you were unable to make the bake sale and would like to make a donation, please contact me and we can meet up. You can email me or contact me via facebook.
Thank you again,
Michelle
mholloway@fbccrosby.net
If you were unable to make the bake sale and would like to make a donation, please contact me and we can meet up. You can email me or contact me via facebook.
Thank you again,
Michelle
mholloway@fbccrosby.net
Monday, July 9, 2012
An Exciting Adventure
Dear friends and family,
I come to you today to give you an update on Samantha and Olivia and to tell you about an amazing opportunity that has come to them. Samantha continues to fight her cancer, and in doing so her immune system has become seriously compromised. Olivia continues to struggle with her eczema, multiple seizures and a variety of other issues. Both girls undergo numerous treatments a week and Olivia also goes to numerous therapies a week. Olivia has been accepted to a special school that is designed to work with her specific needs and we can thankfully report that she has experienced amazing progress. Doctors are still working to find treatment opportunities for Samantha. She has had a couple of tumors removed from her neck area, and they are still working to rid her body of the tumors in her pelvic area.
Now comes to the exciting part!! Samantha and Olivia have both been accepted to a specialized hospital in Colorado. The hospital is known for its specialization in certain areas. Samantha is being admitted to work on her immune system and help to build it up. Olivia is being admitted for her severe dermatological issues. The main doctors will then bring in the various other departments that may be needed for each of the girls so that they may consult and find the best treatment plan for each girl. So for instance, oncologists and neurologists will be called in. Kelly is very thankful to be given this opportunity, but as you can imagine it is also overwhelming due the logistics of getting everyone there and having both girls undergoing treatment at the same time.
Here is where you can help. As always, we need you to pray for the girls as they continue to fight their respective issues. In an effort to help Kelly with the financial needs that go with this trip, we will be holding a bake sale at Arlan's in Crosby on Monday July 16 from 4-7. We need help with donated baked goods, as well as your support at the bake sale. Please feel free to send out emails, make facebook posts, etc. to get the word out and get as much support as you can. They will be flying Samantha, Olivia, Kelly, a family friend to help, and of course Hero. And yes, she has to pay for a separate seat for Hero. We are praying he will be a huge help in helping Olivia deal with the stress of the flight. He is an amazing animal who has truly blessed this family and Olivia beyond measure.
So, please contact me if you are able to provide baked goods for the bake sale or if you have any questions. And most importantly, please PRAY, PRAY, PRAY!! We know that the Lord answers prayers and that HE will provide for the needs of the Gant girls.
Sincerely,
Michelle Holloway
mholloway@fbccrosby.net
I come to you today to give you an update on Samantha and Olivia and to tell you about an amazing opportunity that has come to them. Samantha continues to fight her cancer, and in doing so her immune system has become seriously compromised. Olivia continues to struggle with her eczema, multiple seizures and a variety of other issues. Both girls undergo numerous treatments a week and Olivia also goes to numerous therapies a week. Olivia has been accepted to a special school that is designed to work with her specific needs and we can thankfully report that she has experienced amazing progress. Doctors are still working to find treatment opportunities for Samantha. She has had a couple of tumors removed from her neck area, and they are still working to rid her body of the tumors in her pelvic area.
Now comes to the exciting part!! Samantha and Olivia have both been accepted to a specialized hospital in Colorado. The hospital is known for its specialization in certain areas. Samantha is being admitted to work on her immune system and help to build it up. Olivia is being admitted for her severe dermatological issues. The main doctors will then bring in the various other departments that may be needed for each of the girls so that they may consult and find the best treatment plan for each girl. So for instance, oncologists and neurologists will be called in. Kelly is very thankful to be given this opportunity, but as you can imagine it is also overwhelming due the logistics of getting everyone there and having both girls undergoing treatment at the same time.
Here is where you can help. As always, we need you to pray for the girls as they continue to fight their respective issues. In an effort to help Kelly with the financial needs that go with this trip, we will be holding a bake sale at Arlan's in Crosby on Monday July 16 from 4-7. We need help with donated baked goods, as well as your support at the bake sale. Please feel free to send out emails, make facebook posts, etc. to get the word out and get as much support as you can. They will be flying Samantha, Olivia, Kelly, a family friend to help, and of course Hero. And yes, she has to pay for a separate seat for Hero. We are praying he will be a huge help in helping Olivia deal with the stress of the flight. He is an amazing animal who has truly blessed this family and Olivia beyond measure.
So, please contact me if you are able to provide baked goods for the bake sale or if you have any questions. And most importantly, please PRAY, PRAY, PRAY!! We know that the Lord answers prayers and that HE will provide for the needs of the Gant girls.
Sincerely,
Michelle Holloway
mholloway@fbccrosby.net
Wednesday, March 7, 2012
Answers and Acceptance.....Hard to Hear, Harder to Learn
Well, yesterday Tuesday March 6 we met with another neurologist, this time at Memorial Hermann Children's Hospital. Don't want to get overjoyed with her being so "observant and knowledgable" to Olivia but I have to say I went in with an open mind and an open heart....I thought. We met with her for a little over two hours. She read through all the previous reports, looked over all the scans, ultrasounds, MRI's and lab reports. While discussing Olivia's daily behaviours, problems and concerns, she showed me all the MRI's. In between all of our brains, there is a thick membrane lining housing all of the nerves that connects our right side of the brain to the left. It allows all the nerves to send signals back and forth properly, keeps everything in tact. Well on the first MRI back in July of 2011, the radiologist noticed that the membrane was thin. He quoted " concerned about the thinning membrane lining the corpus luteum"........was that EVER discussed when neurologist got the report, NO! OK am I angry, thats an understatement. Then the last MRI that we had on February 24, 2012, reported that there was no lining......OK am I pissed off now, NO I have surpassed that emotion. I told her am I supposed to be glad you found this! Why can't I just find out the first time what in the hell is wrong with my child....Im sorry I am so angry, frustrated, full of emotions that I've never even had before but you are talking about something that we could have known about a year ago. Not that anything could have fixed it as the conversation went on and as her explanations of the days to come continued but still. Why go to medical school, why take an oath, why have a practice if you're not gonna follow what you promised. WHOA!! I just put my foot in my mouth. I promised myself, I promised God that no matter what came out of the doctors mouth whether it was what I wanted to hear or not, I was going to accept the answer, accept the outcome and say what do I do next....You know it really is hard to do what you set out in your mind to do, or what others recommend you do when you're faced with your child suffering, living a "not so normal" life and feeling absolutely GUILTY over the fact that maybe you should have sought an outside opinion sooner,maybe you should have fought harder to begin with. Maybe so, or maybe I should have shut up along time ago and listened to God tell me you are the mom and I am the healer. You don't have the letters behind your name that say M.D. you dont have the nail scarred hands to prove you CAN do it all, you just have my child to care for, my child to teach and raise and my child that I can heal on Earth or in Heaven....I am so humbled when the good Lord brings me to my knees once again because it truly lets me know the power of His love, His forgiveness and of His presence in my everyday life.
Needless to say, by the end of the visit with the doctor, I was pleased that we met with her, upset over some of the news but accepting of the fact that we have plans, plans in place for the days to come. We have a strategy of how things will be with Olivia and how we are going to deal with her and the best of all, we actually have a follow-up appointment with her after all the future tests that are ordered will be done. Olivia will have an MRI of the neck and lower spine, followed by a spinal tap to remove excess fluid so that the fluid from the brain can drain down. She is going to start steroids an on/off regimen to help reduce swelling and hope and pray that the brain begins to breathe and realizes there is space and it can begin to grow. Next she is going to start her on seizure meds for a trial period of 30 days to see if there is any change in behavior. To see if she begins to sleep at night, has less screaming fits. She is also scheduling a hearing test to see if there is any damage since the tumor is on the paratiod gland which houses the nerves. She knows she hears us but the question is how well..The best news was all these tests will be done within the next few weeks and ALL results will be in when we go to our follow-up visit. That was an answered prayer that wasn;t even prayed for....at least by me, maybe one of my wonderful prayer warriors asked for that and if so I am eternally grateful!!
As far as dealling with Olivia, she is going to need to continue her therapies, she is going to need the extra pushes to grasp concepts, commands and everyday life as opposed to others....but we can handle it, we can handle anything....thanks to a very dear friend who helped me realize that it's going to be hard but not impossible. Olivia has had an interview at a very good school that deals with children with autism and neurological disorders in hopes that this might be the place for her. We have also had an interview with some therapists that can come into the home and do the same treatments that this school would do. We are just waiting to hear back from both places and then praying that what God wants for Olivia that we will be open to and accept.
Please continue to pray for Olivia. All of this has been very difficult on her and on top of all the usual things we are currently going downtown to Texas Children's daily for whirlpool treatments for her excema and this will continue for quite some time. That is hard but she is doing good on the treatments and seems to fight a little less each day. Please continue to pray for sam and hannah as well. This has been hard on them with having to be at the hospital lots more than normal, but as always they seem to adjust and it becomes a routine thats not even questioned. As always, thank you so much to all of you who pray for my precious babies for their comfort, for their healing, for their peace. Thanks to all the many wonderful friend who have been their to love on my babies, give them a little joy and give me a little help even if it is in the surroundings of Texas Children's.....we DEFINITELY have a wonderful church family, wonderful family and friends. Thanks to all who pass along this blog and share and ask for prayers, it's greatly appreciated. You all mean so much to me, those who are my nearest and dearest, those who are aquaintances and those of whom I have never met, you mean the world to me and my family for taking the time to read, pass along and pray. I truly believe God hears all our prayers and I know He has already answered I just have to be patient and trust and have faith in Him. May God Bless you all....all my love
Needless to say, by the end of the visit with the doctor, I was pleased that we met with her, upset over some of the news but accepting of the fact that we have plans, plans in place for the days to come. We have a strategy of how things will be with Olivia and how we are going to deal with her and the best of all, we actually have a follow-up appointment with her after all the future tests that are ordered will be done. Olivia will have an MRI of the neck and lower spine, followed by a spinal tap to remove excess fluid so that the fluid from the brain can drain down. She is going to start steroids an on/off regimen to help reduce swelling and hope and pray that the brain begins to breathe and realizes there is space and it can begin to grow. Next she is going to start her on seizure meds for a trial period of 30 days to see if there is any change in behavior. To see if she begins to sleep at night, has less screaming fits. She is also scheduling a hearing test to see if there is any damage since the tumor is on the paratiod gland which houses the nerves. She knows she hears us but the question is how well..The best news was all these tests will be done within the next few weeks and ALL results will be in when we go to our follow-up visit. That was an answered prayer that wasn;t even prayed for....at least by me, maybe one of my wonderful prayer warriors asked for that and if so I am eternally grateful!!
As far as dealling with Olivia, she is going to need to continue her therapies, she is going to need the extra pushes to grasp concepts, commands and everyday life as opposed to others....but we can handle it, we can handle anything....thanks to a very dear friend who helped me realize that it's going to be hard but not impossible. Olivia has had an interview at a very good school that deals with children with autism and neurological disorders in hopes that this might be the place for her. We have also had an interview with some therapists that can come into the home and do the same treatments that this school would do. We are just waiting to hear back from both places and then praying that what God wants for Olivia that we will be open to and accept.
Please continue to pray for Olivia. All of this has been very difficult on her and on top of all the usual things we are currently going downtown to Texas Children's daily for whirlpool treatments for her excema and this will continue for quite some time. That is hard but she is doing good on the treatments and seems to fight a little less each day. Please continue to pray for sam and hannah as well. This has been hard on them with having to be at the hospital lots more than normal, but as always they seem to adjust and it becomes a routine thats not even questioned. As always, thank you so much to all of you who pray for my precious babies for their comfort, for their healing, for their peace. Thanks to all the many wonderful friend who have been their to love on my babies, give them a little joy and give me a little help even if it is in the surroundings of Texas Children's.....we DEFINITELY have a wonderful church family, wonderful family and friends. Thanks to all who pass along this blog and share and ask for prayers, it's greatly appreciated. You all mean so much to me, those who are my nearest and dearest, those who are aquaintances and those of whom I have never met, you mean the world to me and my family for taking the time to read, pass along and pray. I truly believe God hears all our prayers and I know He has already answered I just have to be patient and trust and have faith in Him. May God Bless you all....all my love
Sunday, March 4, 2012
Jesus....He CAN Move Mountains
Well this past week has been crazy to say in the least. I'm beginning to think that Olivia has the doctors soo stumped that the same answer to every question asked has become routine...."we will have to run some tests and see" Aren't you tired of running tests? I know I'm tired, Olivia's tired... I catch myself sometimes thinking I must be praying wrong, asking for the wrong thing or not praying enough because how can God hear my prayers and NOT answer them???? Helloooo my kids are suffering here, theyre your kids right? I want Him to intervene and He's not and I can't figure out why? Well I have to say, that I realized once again what the problem is as God brought me to my knees like He has soo many times before. As I sit in the doctor's office, or at home on the other end of the phone, I hear what the doctor is telling me, what they are planning or wanting to try and I catch myself saying why?, can't we do something else, can you give me a definite answer this is going to make it ok? Maybe this is God's plan and here I sit being a mommy and not 100% faith invested in God that I'm the one stopping what maybe could be the right intervention for Olivia? It's hard to be facing the fact that what could help her may also be what could literally cause her to be worse off than what she is right now....I have to have FAITH, I have to TRUST but I'm human I want a definite. I know that definitely, Olivia and Sam both will be healed completely one day. Now whether that day is here on earth and I can rejoice or whether that day comes when He calls them home, I have got to learn to accept the no response at the end of my AMEN's, I have to learn to accept the "we will wait and see" answers. Until I can throw up the white flag and truly say I surrender and say "yes" I'll go here, I'll see this doctor, I'll pick up these forms for bloodwork, I may never get the answers I want and God may never intervene because He wants me to see that He is working in their lives but I have to sit back, shut up and listen. WOW that is soo hard for me to do.
These next few weeks are going to be pretty rough and I ask that each one of you who reads this, who believes in the power of prayer and who loves the Lord to please keep my girls in your prayers. As for Olivia, her excema had gotten bad so for the next two weeks we are at Texas Childrens everyday for whirlpool therapy, on top of our other weekly appointments. We are waiting for a phone call anyday to see the neuro team at Memorial Hermann Children's Hospital for a second opinion on what will come of Oliva facing surgery. The doctor at Texas Children's said the fluid on the brain without a doubt needs to be drained in hopes that it will not only relieve the pressure, make her maybe feel a little better but the big plus to doing that would be that the brain might begin to grow. A shunt would need to be put in to do that but because her brain is underdeveloped, and with the malformation and the tumor being where it is, the surgery is risky and the outcome of her being better as opposed to being worse isn't good. There is an option that is being talked about. The doctor has talked about doing a spinal tap to remove fluid and then repeating an MRI four weeks from the spinal tap to see how things are looking. That is alot less invasive, could give us some good results but could also do absolutely nothing and then we would be back to square one....
Also, Sam will have bloodwork done the week after next and a bone scan to see if so far there are any changes. She still has several treatments to go before this round of 12 chemo and radiation treatments are done, but we are praying and hoping for the best. There is only one more 12 rounds that she can do with an upped dosage for chemo and radiation before they begin to do the intravenous chemo. Sam seems to do ok some days and others not at all. She has begun to run fever quite a bit, and be very irritable which is understandable. I can't even begin to imagine how she feels.
Please keep both of the girls in your prayers as the next few weeks will prove to be very trying as we spend everyday at the hospital for treatments, see new doctors and learn of what is to come for the both of them. I know that those of you who are faithful followers not only to this blog, but to the Lord will pray that His will be done in all things regarding Sam and Olivia. Please pray that my mind be open and my heart be accepting to what is being said about my babies. It is hard to sit and watch your babies suffer and be sick and hurt and not be able to do anything but PRAY. They don't understand what is going on with them and all they know is sickness so they don't know that there is something so much better out there. Even though that's hard to accept, I am glad that they can't comprehend they're differences. Over all, they seem to be happy in their daily lives. Please pray for Hannah to have peace and acceptance over things to come and to have the acceptance of others who may not know what is going on with Sam and Olivia. Please pray for her to have compassion for all. She has a hard time if we are out and people are staring at Sam with her mask on her face or Olivia bandaged from neck to her feet to keep her from scratching. She gets angry that people say things. I try to tell her they just don't understand but she always says I don't care! I pray that she will learn from Sam....because Sam doesnt care!!! If someone says to her "why do you have that mask on" Sam being Sam simply says "I'm sick and I don't want your germs" Couldnt have said it any better myself. Im very grateful that Sam is so accepting that her mask is a part of her everyday wardrobe, just like her pink tutus or her cinderella dress! God thank you for her teaching us all of acceptance in any circumstance....
Thank you to all who read and share my blog with your family and friends. I am truly blessed to have you all who pass on the request to pray for my 3 sweet children. May God bless you all.
These next few weeks are going to be pretty rough and I ask that each one of you who reads this, who believes in the power of prayer and who loves the Lord to please keep my girls in your prayers. As for Olivia, her excema had gotten bad so for the next two weeks we are at Texas Childrens everyday for whirlpool therapy, on top of our other weekly appointments. We are waiting for a phone call anyday to see the neuro team at Memorial Hermann Children's Hospital for a second opinion on what will come of Oliva facing surgery. The doctor at Texas Children's said the fluid on the brain without a doubt needs to be drained in hopes that it will not only relieve the pressure, make her maybe feel a little better but the big plus to doing that would be that the brain might begin to grow. A shunt would need to be put in to do that but because her brain is underdeveloped, and with the malformation and the tumor being where it is, the surgery is risky and the outcome of her being better as opposed to being worse isn't good. There is an option that is being talked about. The doctor has talked about doing a spinal tap to remove fluid and then repeating an MRI four weeks from the spinal tap to see how things are looking. That is alot less invasive, could give us some good results but could also do absolutely nothing and then we would be back to square one....
Also, Sam will have bloodwork done the week after next and a bone scan to see if so far there are any changes. She still has several treatments to go before this round of 12 chemo and radiation treatments are done, but we are praying and hoping for the best. There is only one more 12 rounds that she can do with an upped dosage for chemo and radiation before they begin to do the intravenous chemo. Sam seems to do ok some days and others not at all. She has begun to run fever quite a bit, and be very irritable which is understandable. I can't even begin to imagine how she feels.
Please keep both of the girls in your prayers as the next few weeks will prove to be very trying as we spend everyday at the hospital for treatments, see new doctors and learn of what is to come for the both of them. I know that those of you who are faithful followers not only to this blog, but to the Lord will pray that His will be done in all things regarding Sam and Olivia. Please pray that my mind be open and my heart be accepting to what is being said about my babies. It is hard to sit and watch your babies suffer and be sick and hurt and not be able to do anything but PRAY. They don't understand what is going on with them and all they know is sickness so they don't know that there is something so much better out there. Even though that's hard to accept, I am glad that they can't comprehend they're differences. Over all, they seem to be happy in their daily lives. Please pray for Hannah to have peace and acceptance over things to come and to have the acceptance of others who may not know what is going on with Sam and Olivia. Please pray for her to have compassion for all. She has a hard time if we are out and people are staring at Sam with her mask on her face or Olivia bandaged from neck to her feet to keep her from scratching. She gets angry that people say things. I try to tell her they just don't understand but she always says I don't care! I pray that she will learn from Sam....because Sam doesnt care!!! If someone says to her "why do you have that mask on" Sam being Sam simply says "I'm sick and I don't want your germs" Couldnt have said it any better myself. Im very grateful that Sam is so accepting that her mask is a part of her everyday wardrobe, just like her pink tutus or her cinderella dress! God thank you for her teaching us all of acceptance in any circumstance....
Thank you to all who read and share my blog with your family and friends. I am truly blessed to have you all who pass on the request to pray for my 3 sweet children. May God bless you all.
Saturday, February 25, 2012
"Come to Jesus....And Rest"
Here is an update on Olivia and an overview of what has been the last few weeks. This has been a hard day for me to sit and update the blog about my precious little livi. We have had such an emotional roller coaster the last two weeks. I have felt like I've been in a bad dream. As some may know, Olivia had a very bad episode in the pediatricians office last month. It was enough to make the dr leave the office and personally call in a referral to the developmental neurology clinic to get Olivia seen. Well, I am so blessed to not only have a wonderful pediatrician, but have great friends and family of God because by prayers...answered prayers we had an appointment in just 4 weeks, when others wait 6-12 months! PTL! for the answered prayers for a speedy appointment, but what was to come, I was not prepared for. I know that God never gives us more than we can handle. I know that God chose me, but why? What makes me the choice for this job....Do you ever wonder what requirements God sees that we have for why he chooses those of us with "special" babies?
We have an absolutely wonderful developmental neurologist, I couldn't have hand picked a better one. We saw her for over two hours our first visit. She sat down with me, talked about all the problems Olivia was having, referring back to all tests, dr visits etc.. Little did I know, she was going to tell me something I did not want to process. As she pulled up all of Olivia's scans, MRI's as plain as a cloud in the sky you could see Olivia's brain on the computer. There it was, damage in her frontal lobe, an excess of fluid surrounding her brain. She was diagnosed with external hydrocephalus. The scan shows her head is growing like it's supposed to but her brain is not so the fluid is filling up the space where the brain should be. The news I never wanted to hear was being spoken Olivia needs surgery. The neurologist said herself that surgery was a definite. Olivia will need a shunt put in to drain the excess fluid from her brain to releive the pressure. The most disturbing of all of this was what came next. Olivia has been getting radiation every week, several scans done on her head and not ONE person noticed the changes that were going on. It's a real stone to swallow when you hear the dr say she is disgusted that not one dr has mentioned this when it was in the last radiology report. My heart sank....how much has my baby suffered...how much more does she have to suffer?? We had a follow up MRI yesterday and are waiting for the report to be put in and we will then be seeing a second neurosurgeon outside of Texas Children's for an opinion on operating on Olivia. The surgery is risky. The neurologist said that the risks of operating on Olivia could cause more damage to what is there, that there is no guarantee at 100% that this would help Olivia. Also, with the other problems going on there is risks as well to operate on her now. So what do you do? How am I supposed to sit, drink coffee and watch Olivia daily waiting not knowing what's going on inside and wondering is she going to be ok until she's OK enough for the surgeon to operate????
Too much, I'm tired! I want her fixed, I want her healthy, I want her to be normal....Well, alot was put into perspective from a very near and dear friend and family. She is fixed, she is healthy, she is normal. This IS who God intended her to be. This is never a decision I want to be put in as a mom, but I have to know that she is in God's hands, she is His child and she is going to be ok. I know that God gives me the strength, I know God is where my faith and trust and are put and now I have to know that no matter the outcome, if it's His will and if the decision is what He wants me to make, I can handle tomorrow. Through all of this, I have thought back to one of my favorite old hymns....I Surrender All....All to Him my blessed Savior, I surrender all....That's all I have. I don't have the answers, I don't have the healing powers, I don't have the guarantee. All I have is GOD....And God has it all.
I ask all of you who follow this blog, who are reading it for the first time, who know us and who don't to please PRAY. I truly believe in the power of prayer. We have a long road ahead and I know that as people pray for God's will in Olivia;s life to be revealed to me, to the doctors we see that as I stay open to His will that I will recieve His answer. Things will always fall into place, in His time and that there is never a doubt about anything when you are doing His will. Thank you to all who pray daily for my girls, for my family and for the doctors who care for them. It means alot to me that I know I can call on everyone to pray and I dont have to wonder is it being done? Please keep us in your thoughts as we anxiously wait for the test results, for the follow up with a new surgeon, and ultimately for the decision set before us. I know I don't need to worry because God is in control, but I'm human and a mommy and it's hard.....Even though it was under some not so pleasant circumstances, I have truly enjoyed getting to see some of my church family last week. I enjoyed the prayer circles, the laughs, the cries and the joys. Thank you to all who help with my girls, who have taken time out of your busy schedules to visit with us, meet us at hospital, to pray and to love them. You all mean so much to them, to me and to my family. May God bless each of you and again I say Thank You and love to you all...
We have an absolutely wonderful developmental neurologist, I couldn't have hand picked a better one. We saw her for over two hours our first visit. She sat down with me, talked about all the problems Olivia was having, referring back to all tests, dr visits etc.. Little did I know, she was going to tell me something I did not want to process. As she pulled up all of Olivia's scans, MRI's as plain as a cloud in the sky you could see Olivia's brain on the computer. There it was, damage in her frontal lobe, an excess of fluid surrounding her brain. She was diagnosed with external hydrocephalus. The scan shows her head is growing like it's supposed to but her brain is not so the fluid is filling up the space where the brain should be. The news I never wanted to hear was being spoken Olivia needs surgery. The neurologist said herself that surgery was a definite. Olivia will need a shunt put in to drain the excess fluid from her brain to releive the pressure. The most disturbing of all of this was what came next. Olivia has been getting radiation every week, several scans done on her head and not ONE person noticed the changes that were going on. It's a real stone to swallow when you hear the dr say she is disgusted that not one dr has mentioned this when it was in the last radiology report. My heart sank....how much has my baby suffered...how much more does she have to suffer?? We had a follow up MRI yesterday and are waiting for the report to be put in and we will then be seeing a second neurosurgeon outside of Texas Children's for an opinion on operating on Olivia. The surgery is risky. The neurologist said that the risks of operating on Olivia could cause more damage to what is there, that there is no guarantee at 100% that this would help Olivia. Also, with the other problems going on there is risks as well to operate on her now. So what do you do? How am I supposed to sit, drink coffee and watch Olivia daily waiting not knowing what's going on inside and wondering is she going to be ok until she's OK enough for the surgeon to operate????
Too much, I'm tired! I want her fixed, I want her healthy, I want her to be normal....Well, alot was put into perspective from a very near and dear friend and family. She is fixed, she is healthy, she is normal. This IS who God intended her to be. This is never a decision I want to be put in as a mom, but I have to know that she is in God's hands, she is His child and she is going to be ok. I know that God gives me the strength, I know God is where my faith and trust and are put and now I have to know that no matter the outcome, if it's His will and if the decision is what He wants me to make, I can handle tomorrow. Through all of this, I have thought back to one of my favorite old hymns....I Surrender All....All to Him my blessed Savior, I surrender all....That's all I have. I don't have the answers, I don't have the healing powers, I don't have the guarantee. All I have is GOD....And God has it all.
I ask all of you who follow this blog, who are reading it for the first time, who know us and who don't to please PRAY. I truly believe in the power of prayer. We have a long road ahead and I know that as people pray for God's will in Olivia;s life to be revealed to me, to the doctors we see that as I stay open to His will that I will recieve His answer. Things will always fall into place, in His time and that there is never a doubt about anything when you are doing His will. Thank you to all who pray daily for my girls, for my family and for the doctors who care for them. It means alot to me that I know I can call on everyone to pray and I dont have to wonder is it being done? Please keep us in your thoughts as we anxiously wait for the test results, for the follow up with a new surgeon, and ultimately for the decision set before us. I know I don't need to worry because God is in control, but I'm human and a mommy and it's hard.....Even though it was under some not so pleasant circumstances, I have truly enjoyed getting to see some of my church family last week. I enjoyed the prayer circles, the laughs, the cries and the joys. Thank you to all who help with my girls, who have taken time out of your busy schedules to visit with us, meet us at hospital, to pray and to love them. You all mean so much to them, to me and to my family. May God bless each of you and again I say Thank You and love to you all...
Subscribe to:
Posts (Atom)