So far it has been a pretty good week. I think I am beginning to feel more like myself again and less like an emotional train wreck. Maybe I have cried all the tears that I can cry and reality is settling within me. Maybe the Lord is giving me peace. I am enjoying every moment with my girls. I keep realizing that my time to pick them up, carry them in my arms, go out shopping or anywhere alone with them, and give them baths is limited. (I may not really miss bath time all that much though!)
Ella has been pretty clingy these past few days. She only wants mommy to "help" her. We have talked to her a little about Eli having an "owie" on his back and that mommy is going to go to the hospital to get it fixed. I think she is getting a little anxious about it all and I can't say that I blame her. Yet, she is excited about her "vacation" and she cannot wait to pack her clothes. I just wish I was going to get to "vacation" with them.
I was trying to think today of how I cope with hard times. For one, it is very clear that everyone copes differently. This is one thing that Kevin and I clearly learned when we lost Samuel, and one that we are re-learning again.
I cope by planning and researching. I have read and studied more about Spina Bifida than I ever wanted or expected to know. Let's see....there is: hindbrain herniation, Chari Malformation, shunts of various kinds, decompression surgeries, tethered cord surgeries, shunt revision surgeries, there are lesion levels and lesion functions, there are walkers, and standers, and cathing and enema programs...and on and on. I cope by learning all that I can. I want to know what does happen, what might happen, what to expect. I do realize that I will never be able to fully be prepared for this journey, but I like to be informed.
I also like to look to the future. After we lost Samuel, I coped by wanting and desperately needing to have another child. I marked the days off on the calendar. I had it all planned. God's timing was just a little longer...(okay, a lot longer) than mine. I do not know what God is up to in our lives. I do not have a clue what our family will be or look like in five years. I do know a few things that I feel like he has laid on my heart that brings me some hope and encouragement for the future.
I cope by getting up everyday and getting dressed. Sounds simple but when life gets overwhelming sometimes it is easier to want to bury your head in the pillow. I try my best to keep going. I put on my make-up and try to feel good. I want to be at church when there is church. I want to be involved where and when I can. I want to keep living as I would have five weeks ago.
I also cope by praying more. I realize my need for Christ to help get me through little task like sitting in a waiting room full of "happy" pregnant women or trusting in Him when I feel overwhelmed or forsaken. I am continually asking Him to put a hedge of protection around our family and our girls. I am praying that he will provide what we need financially to do all that we need to do. We have seen him begin to answer that prayer and several ways just this week.
Psalm 84
How lovely is your dwelling place, O Lord of hosts!
My soul longs, yes, faints for the courts of the Lord;
my heart and flesh sing for joy to the living God.
Even the sparrow finds a home, and the swallow a nest for herself,
where she may lay her young, at your altars, O Lord of hosts,
my King and my God.
Tuesday, April 5, 2011
Sunday, April 3, 2011
The "T" Word
***Disclaimer***This is written in no way to cause grief or sadness to anyone. It is written based on my personal convictions and experiences.
Twice in my life... I have been offered the "T" word. Twice!!! Each time on two totally separate occasions, each separated by 5 years of growth and living, I have been told that I had the option to terminate my pregnancy. Each time this was offered, it was in a moment of extreme fear, overwhelming sadness and shock.
As a teenager through the leadership of my parents, the guidance of the Holy Spirit, and my own personal commitment to be obedient to the Lord, I was able to remain pure until my wedding day. A true blessing that I remain thankful for and I account that to God's grace and godly parents who did lots of praying. The thought of abortion and termination was surely something I never expected to deal with in my life.
When we learned that our first born baby had a major and fatal kidney defect the first option they gave us was termination. Not only was this option offered once, but rather many times at various appointments. It usually went something like this, "Are you sure you want to continue this pregnancy?" Usually it was with a sense of ...why in the world are you putting yourself through this.
There were so many days as my belly grew and my body changed when just wished so much that it would be over! There were so many days that I just wanted out! I wanted a quick fix. I wanted to get out of the trial. I wanted to get my body back as well as my life. I no longer wanted to be on the prayer list and just wanted to be happy again.
I am sure there were many who questioned our decision for life. Many in the medical world as well as those we encountered in our daily lives. Maybe even some in our own families.
Our decision for life was not based on us being "good" or "moral" people. It was not based on our love and desire for our unborn child. It was not based on what many who loved and supported us thought we should do. It was purely based on God's Word as the basis for absolute truth in our life. Life begins and ends with the creator.
Five years later I have once again been given the option of termination. Apparently, 50% of all spina bifida babies are terminated after receiving the diagnosis. Five years later I still find myself wishing I could somehow get out of this. I find myself craving my sweet little easy life that I had just a few weeks ago when my biggest complaints were fussy girls and potty accidents.
But, five years later I have experienced that blessed peace that God gives in the midst. I've experienced the beauty in doing it God's way. I know he uses trials in great ways and I know that once again life begins and ends with the creator.
I don't know what God is doing in our lives or in the life of our little Eli. I do know I look forward to sending a very cute little Christmas card from the Giordano family of 5, with a precious little boy on it, to the many doctors that have offered the "T" word.
In my dealing with all that we are facing the words from a song that we sing often in church has been ringing in my mind.
Heal my heart and make it clean
Open up my eyes to the things unseen
Show me how to love like You have loved me
Break my heart for what breaks Yours
Everything I am for Your Kingdom's cause
As I walk from earth into eternity
Twice in my life... I have been offered the "T" word. Twice!!! Each time on two totally separate occasions, each separated by 5 years of growth and living, I have been told that I had the option to terminate my pregnancy. Each time this was offered, it was in a moment of extreme fear, overwhelming sadness and shock.
As a teenager through the leadership of my parents, the guidance of the Holy Spirit, and my own personal commitment to be obedient to the Lord, I was able to remain pure until my wedding day. A true blessing that I remain thankful for and I account that to God's grace and godly parents who did lots of praying. The thought of abortion and termination was surely something I never expected to deal with in my life.
When we learned that our first born baby had a major and fatal kidney defect the first option they gave us was termination. Not only was this option offered once, but rather many times at various appointments. It usually went something like this, "Are you sure you want to continue this pregnancy?" Usually it was with a sense of ...why in the world are you putting yourself through this.
There were so many days as my belly grew and my body changed when just wished so much that it would be over! There were so many days that I just wanted out! I wanted a quick fix. I wanted to get out of the trial. I wanted to get my body back as well as my life. I no longer wanted to be on the prayer list and just wanted to be happy again.
I am sure there were many who questioned our decision for life. Many in the medical world as well as those we encountered in our daily lives. Maybe even some in our own families.
Our decision for life was not based on us being "good" or "moral" people. It was not based on our love and desire for our unborn child. It was not based on what many who loved and supported us thought we should do. It was purely based on God's Word as the basis for absolute truth in our life. Life begins and ends with the creator.
Five years later I have once again been given the option of termination. Apparently, 50% of all spina bifida babies are terminated after receiving the diagnosis. Five years later I still find myself wishing I could somehow get out of this. I find myself craving my sweet little easy life that I had just a few weeks ago when my biggest complaints were fussy girls and potty accidents.
But, five years later I have experienced that blessed peace that God gives in the midst. I've experienced the beauty in doing it God's way. I know he uses trials in great ways and I know that once again life begins and ends with the creator.
I don't know what God is doing in our lives or in the life of our little Eli. I do know I look forward to sending a very cute little Christmas card from the Giordano family of 5, with a precious little boy on it, to the many doctors that have offered the "T" word.
In my dealing with all that we are facing the words from a song that we sing often in church has been ringing in my mind.
Heal my heart and make it clean
Open up my eyes to the things unseen
Show me how to love like You have loved me
Break my heart for what breaks Yours
Everything I am for Your Kingdom's cause
As I walk from earth into eternity
Friday, April 1, 2011
today's thoughts
It's mid-night once again and my house is as quiet as a mouse, and I cannot sleep. I've always been quite a night owl, but lately my mind won't slow down. Today I did two of my least favorite things. I did a huge grocery trip at Wal-mart and I cleaned my entire house. You can only let those things go so long....and you have to take control. Those might be the only two things that I won't miss doing while I am on bed rest.
I feel like I have a lot to get done before we head to Vanderbilt. Any cleaning out, organizing, de-cluttering has to get done soon or it probably won't for a very long time. I think that is one of the things I am having the hardest time with right now. I feel like I have like two weeks to live and then my life will never be the same again. I know I will go from surgery to bed rest to a newborn with special needs in the NICU. I feel like the pressure will never let up and the rest of my life will continue at this pace. I know it is not true, but it is how I am feeling.
I admit that each day I am all over the place. One minute I feel full (or maybe not full...maybe more like faultering) with faith. The next minute I feel overwhelmed and wondering if I will ever get to a better place.
Today I picked up my records from my doctor so that we could have a copy in hand if we needed it. It was very interesting to read through them all. I couldn't help but feel my heart sink each time I read something that said "abnormal." Abnormal is hard for this overachieving type A personality. Abnormal is hard period. I know abnormal will probably be one of the most special blessings of my life....but right now I am grieving abnormal.
Sorry all my posts have been such a deviation from fun days and cute pics. I promise they will return again soon...or at least I sure hope so!!
I feel like I have a lot to get done before we head to Vanderbilt. Any cleaning out, organizing, de-cluttering has to get done soon or it probably won't for a very long time. I think that is one of the things I am having the hardest time with right now. I feel like I have like two weeks to live and then my life will never be the same again. I know I will go from surgery to bed rest to a newborn with special needs in the NICU. I feel like the pressure will never let up and the rest of my life will continue at this pace. I know it is not true, but it is how I am feeling.
I admit that each day I am all over the place. One minute I feel full (or maybe not full...maybe more like faultering) with faith. The next minute I feel overwhelmed and wondering if I will ever get to a better place.
Today I picked up my records from my doctor so that we could have a copy in hand if we needed it. It was very interesting to read through them all. I couldn't help but feel my heart sink each time I read something that said "abnormal." Abnormal is hard for this overachieving type A personality. Abnormal is hard period. I know abnormal will probably be one of the most special blessings of my life....but right now I am grieving abnormal.
Sorry all my posts have been such a deviation from fun days and cute pics. I promise they will return again soon...or at least I sure hope so!!
Wednesday, March 30, 2011
Surgery Details
I have had a lot of people asking me about the prenatal surgery that we may be embarking on in the next few weeks. First of all, I am learning as I go, so I am sure many of the details will become clearer in the next few weeks. Since 2003, the surgery was only performed in three locations in the US. Between 2003-2010 the surgery was only offered as a research trial. It was a randomized surgery which meant that couples who wanted to have it had to first qualify, agree to it, and then a computer decided if they were chosen for prenatal or postnatal surgery. There were lots of restrictions on the women who had the surgery because of the nature of the study. For example, after the surgery they had to remain in the hospital vicinity for the remainder of the pregnancy. I am so glad that the trial ended with positive results indicating beneficial results from the prenatal surgery this past December. In fact, the medical journal was just published in February of this year. I am so thankful for the 183 women who participated in this trial, while not knowing what the outcome would be. They definitely gave up a lot and paved they way for others to be able to have this done in the future.
When I am pregnant I am very conservative with everything that I eat and drink! I barely take two regular Tylenol unless I am dying (and I know that they are totally 100% fine to take). So the thought of having major surgery on my baby and uterus while pregnant is a crazy thought to me. In fact, until a few weeks ago I didn't even realize that this was a possibility. (I mean a doctor won't even touch the ugly and very painful varicose vain on the back of my right leg until I am no longer pregnant....but they will perform a major surgery!!!) Needless to say... my thinking is changing!
From what I have learned, the surgery is about a three hour procedure. I will be completely out....thank you Lord. They will hopefully be able to do a low hip to hip incision and....brace yourself....then they take the uterus completely out of the abdominal cavity. They somehow drain all of the amniotic fluid from that precious little sac and and then carefully pinpoint the placenta. They have to make sure the incision is no where near it. Right now my placenta is in the front so they will likely make the uterine incision on the back side of the uterus. They expose the baby enough to get to the back and they delicately close up the spina bifida lesion. They return the baby back into the uterus and close it back up . They add back all the amniotic fluid into the uterus and then return the uterus into my abdominal cavity. Then I would get sewed back up and very carefully monitored. That monitoring would include lots of meds to prevent contractions for the remainder of the pregnancy.
I would be in the hospital for about 5 days and then have to stay close by for while longer until I clear the post-opt appt. At that point, I can return home and do my very best to take it easy for the remaining weeks of my pregnancy. Their goal would be to get me to 34/35 weeks which is crazy early to me, but pre-term delivery is probably the largest risk from the surgery. If I made it to 37 weeks they would do a C-section then. Needless to say, Eli will most likely not be an August baby!
This is definitely not what I had planned for Eli or for our summer. I was so looking forward to beach and pool days now that my girls are older this year. Each day at some point, I start thinking that maybe we shouldn't have the surgery and just do it post-delivery. The surgery definitely is making life more stressful in all directions: financially, emotionally, physically....and it pretty much puts my life on hold for the next two or three months. Then I start thinking about Eli and although I don't know him yet and I cannot even picture his sweet little face in my mind....I know I am his mother. I think of Samuel, Ella, and Eliza. I know that from the first moment I laid my eyes on them that my love for them was immediate!! I think of how if Ella or Eliza ever had any physical problem that I as their mother could physically do something about....I would without a single thought or question of the sacrifice. I would do ANYTHING I could!!! I know that I will feel the same for Eli. Although we haven't yet looked into each others eyes and I've yet to whisper I love yous into his baby ears...I know that I will. So, despite my fears and concerns, I must do all I can to give him the best chance at life. Thank you for your continued prayers.
When I am pregnant I am very conservative with everything that I eat and drink! I barely take two regular Tylenol unless I am dying (and I know that they are totally 100% fine to take). So the thought of having major surgery on my baby and uterus while pregnant is a crazy thought to me. In fact, until a few weeks ago I didn't even realize that this was a possibility. (I mean a doctor won't even touch the ugly and very painful varicose vain on the back of my right leg until I am no longer pregnant....but they will perform a major surgery!!!) Needless to say... my thinking is changing!
From what I have learned, the surgery is about a three hour procedure. I will be completely out....thank you Lord. They will hopefully be able to do a low hip to hip incision and....brace yourself....then they take the uterus completely out of the abdominal cavity. They somehow drain all of the amniotic fluid from that precious little sac and and then carefully pinpoint the placenta. They have to make sure the incision is no where near it. Right now my placenta is in the front so they will likely make the uterine incision on the back side of the uterus. They expose the baby enough to get to the back and they delicately close up the spina bifida lesion. They return the baby back into the uterus and close it back up . They add back all the amniotic fluid into the uterus and then return the uterus into my abdominal cavity. Then I would get sewed back up and very carefully monitored. That monitoring would include lots of meds to prevent contractions for the remainder of the pregnancy.
I would be in the hospital for about 5 days and then have to stay close by for while longer until I clear the post-opt appt. At that point, I can return home and do my very best to take it easy for the remaining weeks of my pregnancy. Their goal would be to get me to 34/35 weeks which is crazy early to me, but pre-term delivery is probably the largest risk from the surgery. If I made it to 37 weeks they would do a C-section then. Needless to say, Eli will most likely not be an August baby!
This is definitely not what I had planned for Eli or for our summer. I was so looking forward to beach and pool days now that my girls are older this year. Each day at some point, I start thinking that maybe we shouldn't have the surgery and just do it post-delivery. The surgery definitely is making life more stressful in all directions: financially, emotionally, physically....and it pretty much puts my life on hold for the next two or three months. Then I start thinking about Eli and although I don't know him yet and I cannot even picture his sweet little face in my mind....I know I am his mother. I think of Samuel, Ella, and Eliza. I know that from the first moment I laid my eyes on them that my love for them was immediate!! I think of how if Ella or Eliza ever had any physical problem that I as their mother could physically do something about....I would without a single thought or question of the sacrifice. I would do ANYTHING I could!!! I know that I will feel the same for Eli. Although we haven't yet looked into each others eyes and I've yet to whisper I love yous into his baby ears...I know that I will. So, despite my fears and concerns, I must do all I can to give him the best chance at life. Thank you for your continued prayers.
Tuesday, March 29, 2011
Ultrasound
When I think back on who I was on November 7th, 2005, I see a young 25 year old girl who was nothing but excited, presumptious, and unscathed. Until that day, the most devestating event in my young life was the death of my beloved grandfather when I was ten. This day was the day that I first felt vunerable to the wiles of this life. The first time I experienced the unfairness of life and that my life specifically wasn't going to always go as I wished.
Today when the same "older" couple sits anxiously in a doctor's office awaiting an ultrasound, we are anything but presumptious. We are hopeful, but not presumptious. I think we are at the point that we just brace ourselves. I must say if you have been so very blessed to only experience the many joys of pregnancy, (minus the nausea, exhaustion, and a few other unpleasant experiences) it truely is a blessing. What I would give to have that experience.
Today we had yet another ultrasound. We got the head ultrasound man, an ultrasound tech and a resident. Apparently he was there mainly to teach the other two some of the things to look for in a spina bifida case. Lovely!!! He also apparently had very little concern to the fact that I was about to shake off the table. I think somewhere in there he told me I just needed to relax. He spoke in medical jargon and was not interested in filling us in on what he was looking at over and over. Granted I have had so many ultrasounds that I know a lot of what they are looking at and looking for....but I didn't like one bit that he wasn't giving us any comforting words along the way.
We did learn that Eli's lesion appears to be a little higher on his spine than what they orignally thought. This is not good. The lower it is, is always better. The higher it is, generally there is less function in what below. I am still going to pray that they are wrong. We probably won't know for sure until after the surgery or maybe even until after he is born and he has an MRI. So we definitely feel like we need to progress with the prenatal surgery plan for now unless the Lord closes the door.
We did get good news that so far his feet are not clubbed. Although that can still happen, it hasn't yet. Also his ventricles are not really that enlarged yet, so that is good. I know it will most likely occur at some point, but hey I will take anything good.
These words continue to ring through my head. (2 Cor. 4:7-10)
"We now have this light shining in our hearts, but we ourselves are like fragile clay jars containing this great treasure. This makes it clear that our great power is from God, not from ourselves. We are pressed on every side by troubles, but we are not crushed. We are perplexed, but not driven to despair. We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed. Through suffering, our bodies continue to share in the death of Jesus so that the life of Jesus may also be seen in our bodies."
Today when the same "older" couple sits anxiously in a doctor's office awaiting an ultrasound, we are anything but presumptious. We are hopeful, but not presumptious. I think we are at the point that we just brace ourselves. I must say if you have been so very blessed to only experience the many joys of pregnancy, (minus the nausea, exhaustion, and a few other unpleasant experiences) it truely is a blessing. What I would give to have that experience.
Today we had yet another ultrasound. We got the head ultrasound man, an ultrasound tech and a resident. Apparently he was there mainly to teach the other two some of the things to look for in a spina bifida case. Lovely!!! He also apparently had very little concern to the fact that I was about to shake off the table. I think somewhere in there he told me I just needed to relax. He spoke in medical jargon and was not interested in filling us in on what he was looking at over and over. Granted I have had so many ultrasounds that I know a lot of what they are looking at and looking for....but I didn't like one bit that he wasn't giving us any comforting words along the way.
We did learn that Eli's lesion appears to be a little higher on his spine than what they orignally thought. This is not good. The lower it is, is always better. The higher it is, generally there is less function in what below. I am still going to pray that they are wrong. We probably won't know for sure until after the surgery or maybe even until after he is born and he has an MRI. So we definitely feel like we need to progress with the prenatal surgery plan for now unless the Lord closes the door.
We did get good news that so far his feet are not clubbed. Although that can still happen, it hasn't yet. Also his ventricles are not really that enlarged yet, so that is good. I know it will most likely occur at some point, but hey I will take anything good.
These words continue to ring through my head. (2 Cor. 4:7-10)
"We now have this light shining in our hearts, but we ourselves are like fragile clay jars containing this great treasure. This makes it clear that our great power is from God, not from ourselves. We are pressed on every side by troubles, but we are not crushed. We are perplexed, but not driven to despair. We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed. Through suffering, our bodies continue to share in the death of Jesus so that the life of Jesus may also be seen in our bodies."
Monday, March 28, 2011
Gloomy
Today was such a gloomy, cold and wet day on the outside, but it it was also a gloomy day for me on the inside. Just being real here...today I am just sad. This morning I decided to go through some of our baby clothes to see if we had any that were gender neutral. As I went through my boxes of all our cute little girl stuff, I just felt so sad and frustrated. Frustrated that this is most likely our very last baby and all of those special little clothes will remain boxed up. I don't know if I will ever be able to part with them. Each little outfit holds such special memories to me. I felt frustrated that this is probably my last pregnancy and it is such a hard one. Any excitement and happiness seems to be overpowered by the unknowns. Instead of enjoying this time as much as possible, I am just trying to get through. To be honest, I am sad that our Eli will be special needs child. I am sad that he will be different from the other kids in the nursery. I am sad that he will come into the world with MRI's, ultrasounds, therapies, and such waiting for him. I am mad that being healthy and taking those expensive prescription prenatals for five years didn't prevent this. I am just being honest.
I have spent some time reading blogs of moms who have young kids with spina bifida. They are both overwhelming and encouraging. Most of them agree that the hardest time when having a child with spina bifida is the pregnancy. I know that once I see our little Eli that I will fall so in love with him that I will be willing to move heaven and earth to be the best mommy I can to him. It is just hard to be there right now.
After losing Samuel, I really struggled with the fear of losing another child. I think I was constantly waiting for the sky to fall again. In the beginning, every little sickness with Ella, was so scary to me. I am not sure I really slept much her entire first year because I was so scared of SIDS. Over the years the Lord and I have worked through this fear. I have learned that every sickness isn't something major and that I have to give my fear of another loss to the Lord. I know Eli is going to challenge me in an entire new way.
We have another ultrasound tomorrow. Please join us in praying that we will receive some good news.
I have spent some time reading blogs of moms who have young kids with spina bifida. They are both overwhelming and encouraging. Most of them agree that the hardest time when having a child with spina bifida is the pregnancy. I know that once I see our little Eli that I will fall so in love with him that I will be willing to move heaven and earth to be the best mommy I can to him. It is just hard to be there right now.
After losing Samuel, I really struggled with the fear of losing another child. I think I was constantly waiting for the sky to fall again. In the beginning, every little sickness with Ella, was so scary to me. I am not sure I really slept much her entire first year because I was so scared of SIDS. Over the years the Lord and I have worked through this fear. I have learned that every sickness isn't something major and that I have to give my fear of another loss to the Lord. I know Eli is going to challenge me in an entire new way.
We have another ultrasound tomorrow. Please join us in praying that we will receive some good news.
Sunday, March 27, 2011
the weekend
We had a great weekend spending time together as a family and getting some things done around the house. One of my favorite things to do is work in our yard and plant flowers. Each spring we take one Saturday to get the yard looking good after letting it go throughout the fall and winter. We get up early head to Lowe's. I pick out the flowers and ferns and Kev gets the fertilizer, mulch, and such. It is always a lot of work, but I love the immediate result you get from a better looking yard. Don't get me wrong this is about the only day of the year that I do yardwork!! I do water and take care of my flowers. Normally somewhere around July it gets so hot and I get so tired of watering them....that they die!
Saturday night we had a great meal with some friends. We had kabobs, this wonderful bread and homemade creme puffs. They were one of the best things I've eaten in a long time. It was great to be around such sweet friends and to enjoy such yummy food after working so hard all day!
Today was a great day at church. We are so blessed to have such a wonderful church family praying for us.
We have our next appointment on Tuesday for another ultrasound. It should be more telling as to exactly where the site of the lesion is and also if there has been a change in the size of his ventricles and any other changes. We are praying for miracles and leaving the results up to God.
I am not sure if I posted this, but late last week we heard from Vanderbilt and our consult and surgery are scheduled in a few short weeks. This is all dependent on the outcome of Tuesday's ultrasound and the consultation visit. We also found out on Friday that the price of the surgery is a lot...$68,000 and our insurance company is saying that they will not cover it. The research trial on the surgery just ended a few months ago and the journal was only published in February. Patients are just now beginning to have the surgery and needing coverage and we are some of the lucky ones to be first. We are praying that they will change their minds and approve it. We will have to agree to the surgery not knowing what the outcome of their decision will be. We are praying that they will see that this is no longer experimental surgery and will cover the procedure.
Thank you all who are reading my little blog and praying for us. I was shocked tonight at church when several of the older ladies told me that they were all reading it. I appreciate everyone who is walking along on this journey with us and I am praying that we will all see the Lord do great and wonderful things in the life of our little, tiny Eli.
Saturday night we had a great meal with some friends. We had kabobs, this wonderful bread and homemade creme puffs. They were one of the best things I've eaten in a long time. It was great to be around such sweet friends and to enjoy such yummy food after working so hard all day!
Today was a great day at church. We are so blessed to have such a wonderful church family praying for us.
We have our next appointment on Tuesday for another ultrasound. It should be more telling as to exactly where the site of the lesion is and also if there has been a change in the size of his ventricles and any other changes. We are praying for miracles and leaving the results up to God.
I am not sure if I posted this, but late last week we heard from Vanderbilt and our consult and surgery are scheduled in a few short weeks. This is all dependent on the outcome of Tuesday's ultrasound and the consultation visit. We also found out on Friday that the price of the surgery is a lot...$68,000 and our insurance company is saying that they will not cover it. The research trial on the surgery just ended a few months ago and the journal was only published in February. Patients are just now beginning to have the surgery and needing coverage and we are some of the lucky ones to be first. We are praying that they will change their minds and approve it. We will have to agree to the surgery not knowing what the outcome of their decision will be. We are praying that they will see that this is no longer experimental surgery and will cover the procedure.
Thank you all who are reading my little blog and praying for us. I was shocked tonight at church when several of the older ladies told me that they were all reading it. I appreciate everyone who is walking along on this journey with us and I am praying that we will all see the Lord do great and wonderful things in the life of our little, tiny Eli.
Subscribe to:
Posts (Atom)