Well, I finally got around to trying to make apple jelly using the apple juice I had made earlier. Our apples in Mississippi are already ripe (must be the drought weather!) and we harvested our apple tree and a lady's from our church. We ended up with a nice blend of about 4 different types of apples. We just moved here 4 months ago, so I'm not sure the type of apple we have ;)
After I peeled and cored the apples to make applesauce and apple butter, I put the peelings/cores in a stockpot with water and simmered them for hours. At one point, I also put them in the crockpot and left them on low overnight. Then, I strained the juice lightly (I didn't want it entirely clear. I like the bits of apple in it) Now it was ready for jelly making!
(I did find out later that I could have simmered it a little longer to pasteurize the juice and can it. I will do this next time! We go through A LOT of apple juice in our house!)
Now, to the jelly making! This is my first attempt at jelly making. I did a large amount of reading to prepare. My first batch, I switched the order of ingredients. (Did you know there's a difference in ingredient order depending on whether you use powder or liquid pectin!?!) Needless to say, my jelly did not set. I read that you could boil it down to get to the gel point and then re-can the jelly. So, a few days later, I boiled it for about an hour and never got to the gel point :(
I tasted it and it tasted fine, so I decided this would be used as an apple syrup instead. We could put it on waffles or pancakes! I put one quart in the fridge and canned one pint labeling it apple syrup ;)
At this point, I was ready to try it again. So, today I made 7 batches of apple jelly using different pectins. I tried powdered pectin, liquid pectin, and low/no sugar added pectin to which I used honey. I also added rosemary to 3 quarts of the liquid pectin quarts. I'll use this to put on pork or chicken later. It smelled soooo good!!!
Out of the 7 batches, I made 1 quart and 1 pint apple syrup, 3 quarts rosemary apple jelly, 1 quart honey apple jelly, 5 quarts apple jelly, and 2 pints apple jelly. I remember reading once not to use quarts when making jelly, but I couldn't find online a reason and I know you can buy that size of it in the store. I also didn't have anything other than quart jars left :) So, I decided it was worth it to me to do the quarts regardless. If they don't set, we can still use them in cooking or on waffles/pancakes!
We'll see if they set in the next week or so. This was a first for me, so I learned something and got to add to our pantry :)
Tuesday, August 14, 2012
Saturday, August 11, 2012
Blessings from Friends
Well, an awesome friend (I'm going to start referring to her as Ms. J) came by with 2 huge bags of pink-eyed purple hull peas (also known as field peas in some parts of the US) for us!!!
I blanched them for about 5 mins (that means put them in boiling water), rinsed them in cold water, drained them, and then bagged them and put them in the freezer. I did one gallon bag and the rest were quart sized bags that held 3 cups each. (Did I mention she brought baggies too just in case I didn't have enough!?! Ms. J is such a God-sent blessing!)
I ended up bagging 58 cups of peas! We didn't eat these beans til we moved to MS but that's gonna change now! Yumm!
In the picture you can see the stockpot on the back burner that's cooking down our apple peelings and cores into apple juice. I then put them (and another batch) into crockpots for the night on low heat. I'll strain the juice and refrigerate it until I go to town and get more sugar to make apple jelly!
Today I plan on finishing the last of our apple harvest by making applesauce (and maybe some apple butter). Those peelings will be cooked down too ;)
I've also plan out our breakfasts and dinners for the upcoming week along with the grocery list needed for them. This week's dinners are going to be: Chicken alfredo, BBQ chicken, sloppy joes, BBQ chicken salad (I'll cook all the BBQ chicken at the same time), Broiled fish with salad, and Shrimp Po'boys.
Breakfasts are easy. They take about as much time as pouring a bowl of cereal! Every week we have the same things but flavor them differently. We have: oatmeal, eggs with breakfast meat, muffins, grits, and breakfast sandwich. Last week's oatmeal was apple cinnamon with real apples cut up in it, grits were pumpkin pie flavor, muffins were chocolate banana with chocolate chips, breakfast meat was bacon (and another day we had corned beef hash), and the kids had cereal one day.
Final preparations for tomorrow's Sunday church service and next week's homeschool plan going also. Our 2012-2013 school year officially starts Monday!
Friday, August 10, 2012
Coming to the end of our apples
Well, today has been a slow day here! We cleaned up around the house, started some laundry,and a family friend from Memphis came to visit for the day. The kids gave him the grand tour of the house, Matt showed him the church, and then we took a drive down to the Delta and out for lunch at a drive-in called Bumpers. After lunch hubby and kiddos played Monopoly Deal with him before he headed home(we love board and card games!)
Sooo, I only got 2 quarts of smooth unsweetened applesauce canned, 4 gallon bags of apple pie filling in the freezer, and a stockpot of apple juice made for later apple-jelly making. The recipe for the apple pie filling can be found here
It's super easy! I've now made 8 of these bags to put in our freezer ;)
I also saved all the peelings and apple cores from making these last 4 bags and will throw them into a pot of water, along with any apples too far gone for sauce, and will make some more apple juice by letting them simmer for several hours. This will also work in a crock pot. I'll then use the apple juice to make apple jelly. This will be a first for me, so I'll let you know how it goes!
Tomorrow's goal: make chocolate waffles for breakfast, make applesauce of the rest of our apple harvest and get it canned, pick the green beans ready in our garden and can if there's enough, and make sure everything's ready for homeschooling year to begin on Monday!
Sooo, I only got 2 quarts of smooth unsweetened applesauce canned, 4 gallon bags of apple pie filling in the freezer, and a stockpot of apple juice made for later apple-jelly making. The recipe for the apple pie filling can be found here
It's super easy! I've now made 8 of these bags to put in our freezer ;)
I also saved all the peelings and apple cores from making these last 4 bags and will throw them into a pot of water, along with any apples too far gone for sauce, and will make some more apple juice by letting them simmer for several hours. This will also work in a crock pot. I'll then use the apple juice to make apple jelly. This will be a first for me, so I'll let you know how it goes!
Tomorrow's goal: make chocolate waffles for breakfast, make applesauce of the rest of our apple harvest and get it canned, pick the green beans ready in our garden and can if there's enough, and make sure everything's ready for homeschooling year to begin on Monday!
Thursday, August 9, 2012
Transforming the blog
Up until now, this blog has been for me to occasionally post on my walk with the Lord as we journey through my oldest son's diagnosis of brain cancer. My posts were about once or twice a year! I have been posting a lot on FaceBook but have been encouraged to post on a blog instead, so I'm transforming this blog into that :) I'm still going to blog on our journey but that journey now includes moving from Memphis to Cascilla, MS.
We've gone from BIG, BIG city (everything we need within 5 mins of our apartment) to a town that ONLY has a post office (nearest Wal-Mart/town is 25 miles away)! We moved here 4 months ago after my hubby accepted a position as a pastor. One phrase we heard over and over is "You're in the country now!"....hence the blog name ;)
This my experience as a semi-city girl to country girl who has her own garden, cans and freezes her crops, and maybe some day soon has some chickens!
Come along with me....learn with me, celebrate my new discoveries, laugh at my mistakes, watch my journey, be inspired to try some yourself!
We've gone from BIG, BIG city (everything we need within 5 mins of our apartment) to a town that ONLY has a post office (nearest Wal-Mart/town is 25 miles away)! We moved here 4 months ago after my hubby accepted a position as a pastor. One phrase we heard over and over is "You're in the country now!"....hence the blog name ;)
This my experience as a semi-city girl to country girl who has her own garden, cans and freezes her crops, and maybe some day soon has some chickens!
Come along with me....learn with me, celebrate my new discoveries, laugh at my mistakes, watch my journey, be inspired to try some yourself!
Saturday, May 7, 2011
Mother's Day 2011
Mother’s Day always reminds me of being pregnant for the first time…and all that we face today.
See, when I became pregnant for the first time, I started working with children with special needs. I did play therapy and assessed kids developmentally. The kids that I worked with had diagnosis ranging from speech delay to spina bifida to down syndrome….there was great variety. They all had two things in common. One, they were all under three years old. Two, they were all children.
Now, if you are like I was, I didn’t think I could handle some of the diagnosis. I am not a medical person and the thought of trachs, feeding tubes, and such was more than I could think about. The funniest thing happened though. When I went to see one of these kids, what I saw was that they were a child. Their diagnosis or medical equipment didn’t attract my attention first. It was that I was looking at and talking with a child. I soon found that the Lord grew me in my tolerance and love not only for my job but for the children I worked with…all the while knowing I had a child of my own growing inside of me.
At this time, I lived in a small town and it was apparent there that most of the children we serviced were from low-income housing. It was my responsibility to go to their homes once or twice a week to provide in-home services for the child, which of course lead to discussions with the parents and exposure to their living conditions. I make absolutely no judgments and know that my experience is limited to that time and place, but what I saw was most of these children’s moms didn’t know how to care for their children or their house. Often times, the home was littered with bugs visible everywhere to the point I was afraid to wear open-toed shoes or sit on the floor, as was my job. Old food was left all over the house. Many times other adults were in and out of the house constantly with no regard to the children that were present. Kids were dirty and undressed. The parents were uneducated and unable to work, especially when faced with a child with special needs. And my heart broke for these families.
At this time, I was a fairly new Christian without ever having anyone to help disciple me or show me how to study my Bible and grow in my relationship with the Lord. My understanding was very limited to salvation and little else besides the Old Testament accounts of Samson, Moses, and such. But, as I worked with these children and fell in love with them, I began to pray for them and my own child-to-come. I remember several times praying and asking the Lord that IF He had a certain number or quota of special needs children to place in this world, that He would be gracious enough to give one to my husband and me and spare another family like I was working with. I told Him I knew that He was teaching me and equipping me to work with children such as these and wanted to give and do the very best for the child. I prayed that my child would have special needs to spare another.
(Looking back now, I know this speaks volumes about my ignorance of sovereignty and more but my faith was real in trusting Him)
I did have a hard pregnancy with that child and there were some red flags along the way. Each time, the Lord would send me a rainbow in the sky, and I knew that He was reminding me that everything would be okay…to be still in Him. The delivery was also difficult, even with them inducing me two weeks early. Little did I know that it was just the beginning
Isaiah was born without any apparent problems, but he was extremely jaundiced. For the first weeks of his life, he lived in a light box we brought home and he daily had to have his heels pricked for blood tests. How pitiful it was to look at his blackened heels from all the blood-letting. But, he recovered from that without complication.
At fourteen months, our doctor ordered an x-ray and then MRI of Isaiah’s arm and neck/spine after we again brought up to him that Isaiah was holding his left arm bent at the elbow at all times. This was to be his first time for an MRI and anesthesia. It would be our first lesson in being his advocate. The eventual result was a diagnosis of brachial neuropathy, which means that several of his nerves in his neck/spine have been strained and some severed resulting in limited mobility and muscle atrophy. They said it either happens at birth, in which case is immediately apparent…and it wasn’t, or that it requires a car-accident type of trauma, which he never had. So, they cannot explain how he has it. They told us he would never be able to do what he was already doing and that they wanted to do a spinal tap on our 14 month old to clarify their diagnosis...although they knew that regardless of what they found they would not change their course of action. We refused. Instead, he received intensive OT and PT for 6 months until he would hold it down more normally and use it more frequently. We were so heartbroken at his diagnosis, because we envisioned him at school-age with kids laughing at him and how that would shape and change his joyful personality. Yes, even at 2 years old, he was a very joyful child! The Lord began to increase our prayer life greatly through this as we prayed for wisdom and for Isaiah. He still has the muscle atrophy today but most people don’t realize his brachial neuropathy by looking at him….answered prayer!
Fast-forward from Isaiah at age 2 to age 7. Every Mother’s Day, or approaching the day, I was reminded again of my desperate prayers while pregnant with him, pleading with the Lord to allow me to have a child with special needs and spare someone else. I looked at what he has and felt guilty that maybe I had caused him to have problems, because the Lord just answered my prayers. But, the Lord in the meantime had moved us to a Bible-preaching church that taught us the truth and we grew more in that time than ever before. And, He began to show me that He doesn’t have X number of illnesses and such to hand out and that He had a plan for me and Isaiah before Isaiah was even born. But, the guilt that I felt didn’t allow me to dwell on it much to let Him get through with His truth. Deep down, I still carried it with me.
At the age of 7, Isaiah was diagnosed with a craniopharyngioma brain tumor. The shortened version is that within the next 3.5 years of his life, he would have 7 surgeries, 4 procedures, 31 radiation treatments, lose all of his vision with minimal recovery, develop a foot-to-hip blood clot, develop total hormone-production loss, need complete rehab to relearn walking, eating, dressing, etc and face life-long complications.
Now, fast-forward to Isaiah at age 11….today. As Mother’s Day 2011 is approaching in the next couple of days, my mind is again drawn back to all these things. I realize just how much the Lord has grown me personally in my knowledge and relationship with Him...yet He still isn’t finished with me! I was thinking about the guilt that I carried about those fervent prayers for Isaiah to have special needs and ALL that he has endured since then. I thought about how prideful, arrogant, and assuming it seems to pray in such a way. But, the Lord reminded me of the sincerity and faith that was true of my prayers when I prayed them. I didn’t pray them because I thought I was better than any other mother but because I had Him…and that’s what made the difference. I prayed those prayers to spare others because I knew that He would be with me and provide whatever I may need.
And, in that moment, He showed me that the Holy Spirit lead me to pray such a prayer because He was preparing my heart for the child He already knew was being formed within me. He knew of the trials and complications that Isaiah would face in this life. He knew of the heartache, weariness of soul, and anguish I would feel as his mother. He knew the torment Isaiah would endure. And He knew what it would mean to me today to know that He chose me to be Isaiah’s mother when He could’ve chosen anyone else and that this is the child I prayed for before I even knew him.
I don’t know what lies ahead for Isaiah, whether unspeakable joy or unrelenting pain, but I know that the Lord has privileged me to walk it with him and that He will give me everything I need to continue the journey until He calls me home.
See, when I became pregnant for the first time, I started working with children with special needs. I did play therapy and assessed kids developmentally. The kids that I worked with had diagnosis ranging from speech delay to spina bifida to down syndrome….there was great variety. They all had two things in common. One, they were all under three years old. Two, they were all children.
Now, if you are like I was, I didn’t think I could handle some of the diagnosis. I am not a medical person and the thought of trachs, feeding tubes, and such was more than I could think about. The funniest thing happened though. When I went to see one of these kids, what I saw was that they were a child. Their diagnosis or medical equipment didn’t attract my attention first. It was that I was looking at and talking with a child. I soon found that the Lord grew me in my tolerance and love not only for my job but for the children I worked with…all the while knowing I had a child of my own growing inside of me.
At this time, I lived in a small town and it was apparent there that most of the children we serviced were from low-income housing. It was my responsibility to go to their homes once or twice a week to provide in-home services for the child, which of course lead to discussions with the parents and exposure to their living conditions. I make absolutely no judgments and know that my experience is limited to that time and place, but what I saw was most of these children’s moms didn’t know how to care for their children or their house. Often times, the home was littered with bugs visible everywhere to the point I was afraid to wear open-toed shoes or sit on the floor, as was my job. Old food was left all over the house. Many times other adults were in and out of the house constantly with no regard to the children that were present. Kids were dirty and undressed. The parents were uneducated and unable to work, especially when faced with a child with special needs. And my heart broke for these families.
At this time, I was a fairly new Christian without ever having anyone to help disciple me or show me how to study my Bible and grow in my relationship with the Lord. My understanding was very limited to salvation and little else besides the Old Testament accounts of Samson, Moses, and such. But, as I worked with these children and fell in love with them, I began to pray for them and my own child-to-come. I remember several times praying and asking the Lord that IF He had a certain number or quota of special needs children to place in this world, that He would be gracious enough to give one to my husband and me and spare another family like I was working with. I told Him I knew that He was teaching me and equipping me to work with children such as these and wanted to give and do the very best for the child. I prayed that my child would have special needs to spare another.
(Looking back now, I know this speaks volumes about my ignorance of sovereignty and more but my faith was real in trusting Him)
I did have a hard pregnancy with that child and there were some red flags along the way. Each time, the Lord would send me a rainbow in the sky, and I knew that He was reminding me that everything would be okay…to be still in Him. The delivery was also difficult, even with them inducing me two weeks early. Little did I know that it was just the beginning
Isaiah was born without any apparent problems, but he was extremely jaundiced. For the first weeks of his life, he lived in a light box we brought home and he daily had to have his heels pricked for blood tests. How pitiful it was to look at his blackened heels from all the blood-letting. But, he recovered from that without complication.
At fourteen months, our doctor ordered an x-ray and then MRI of Isaiah’s arm and neck/spine after we again brought up to him that Isaiah was holding his left arm bent at the elbow at all times. This was to be his first time for an MRI and anesthesia. It would be our first lesson in being his advocate. The eventual result was a diagnosis of brachial neuropathy, which means that several of his nerves in his neck/spine have been strained and some severed resulting in limited mobility and muscle atrophy. They said it either happens at birth, in which case is immediately apparent…and it wasn’t, or that it requires a car-accident type of trauma, which he never had. So, they cannot explain how he has it. They told us he would never be able to do what he was already doing and that they wanted to do a spinal tap on our 14 month old to clarify their diagnosis...although they knew that regardless of what they found they would not change their course of action. We refused. Instead, he received intensive OT and PT for 6 months until he would hold it down more normally and use it more frequently. We were so heartbroken at his diagnosis, because we envisioned him at school-age with kids laughing at him and how that would shape and change his joyful personality. Yes, even at 2 years old, he was a very joyful child! The Lord began to increase our prayer life greatly through this as we prayed for wisdom and for Isaiah. He still has the muscle atrophy today but most people don’t realize his brachial neuropathy by looking at him….answered prayer!
Fast-forward from Isaiah at age 2 to age 7. Every Mother’s Day, or approaching the day, I was reminded again of my desperate prayers while pregnant with him, pleading with the Lord to allow me to have a child with special needs and spare someone else. I looked at what he has and felt guilty that maybe I had caused him to have problems, because the Lord just answered my prayers. But, the Lord in the meantime had moved us to a Bible-preaching church that taught us the truth and we grew more in that time than ever before. And, He began to show me that He doesn’t have X number of illnesses and such to hand out and that He had a plan for me and Isaiah before Isaiah was even born. But, the guilt that I felt didn’t allow me to dwell on it much to let Him get through with His truth. Deep down, I still carried it with me.
At the age of 7, Isaiah was diagnosed with a craniopharyngioma brain tumor. The shortened version is that within the next 3.5 years of his life, he would have 7 surgeries, 4 procedures, 31 radiation treatments, lose all of his vision with minimal recovery, develop a foot-to-hip blood clot, develop total hormone-production loss, need complete rehab to relearn walking, eating, dressing, etc and face life-long complications.
Now, fast-forward to Isaiah at age 11….today. As Mother’s Day 2011 is approaching in the next couple of days, my mind is again drawn back to all these things. I realize just how much the Lord has grown me personally in my knowledge and relationship with Him...yet He still isn’t finished with me! I was thinking about the guilt that I carried about those fervent prayers for Isaiah to have special needs and ALL that he has endured since then. I thought about how prideful, arrogant, and assuming it seems to pray in such a way. But, the Lord reminded me of the sincerity and faith that was true of my prayers when I prayed them. I didn’t pray them because I thought I was better than any other mother but because I had Him…and that’s what made the difference. I prayed those prayers to spare others because I knew that He would be with me and provide whatever I may need.
And, in that moment, He showed me that the Holy Spirit lead me to pray such a prayer because He was preparing my heart for the child He already knew was being formed within me. He knew of the trials and complications that Isaiah would face in this life. He knew of the heartache, weariness of soul, and anguish I would feel as his mother. He knew the torment Isaiah would endure. And He knew what it would mean to me today to know that He chose me to be Isaiah’s mother when He could’ve chosen anyone else and that this is the child I prayed for before I even knew him.
I don’t know what lies ahead for Isaiah, whether unspeakable joy or unrelenting pain, but I know that the Lord has privileged me to walk it with him and that He will give me everything I need to continue the journey until He calls me home.
Thursday, August 26, 2010
Saturday, July 10, 2010
What You Might Not Know About Our June (part 1)
On June 4, 2010, my oldest son Isaiah underwent his 2nd craniotomy, which was his 6th brain surgery, to remove as much of his craniopharyngioma brain tumor as possible. I won't take time now to go into how he is a unique case or why we didn't do this before. Suffice it to say, the surgery took less than half the time expected and they were able to completely remove all but a few millimeters of calcified (dead) tissue. Since that miracle, we have faced many gains, losses, and lessons. It is my hope and prayer that by sharing these with you, some of the ways the Lord has worked and is working in our situation will be shown. And although each of us (Isaiah, my husband, our other 2 children, and I) have been effected by them differently, these need to be from our side. His siblings were shielded from much of this and Isaiah doesn't remember any of it now. (Short-term memory loss is one side-effect from brain surgery)
Isaiah woke up from surgery without vision. His optic nerves are healthy, there's no bleeding, no swelling that would cause it. Endocrine, neurology, and opthamology cannot explain why he cannot see. Yet, his mind supplied him images as it tried to make sense of what it sensed. He saw things that weren't there and tried to interact with them by reaching out, opening jars that weren't there, eating food that's not real, etc. What further complicates this is that he suffered from psychosis. This is from him spending 4 days in ICU immediately following surgery, his sodium levels thrown off from surgery, and because of the area of brain effected by surgery. Many times, he thought he is somewhere else. There are times when he didn't even recognize us as his parents.
The amazing blessing of this time is that even when he was not in his right mind, he was concerned with showing and leading others to Jesus and during his hardest struggles he cried out to the Lord-praying aloud for help and to glorify Him.
With not having his vision, Isaiah was forced back into an almost infant-like state. He couldn't do anything himself. We had to begin with the basics and teach him to get his hand to his mouth so he could begin to feed himself hand-held foods and be able to drink from a "sports bottle" that was really a sippy-cup with a straw. He also had to learn to feel the food against his mouth as we spoon-fed him to know when to open his mouth for a bite or a drink. Once he had that, we began to work on teaching him to hold and use a fork and spoon again. These are much harder to do when you cannot see the food that you are trying to get onto them. He had to learn to use both hands together, as they didn't seem to naturally want to, to hold the container with one and scoop with the other. At this point, we weren't even trying to check out his mobility yet.
As he was moved to a regular room and his sodium levels started to stabilize, the psychosis episodes became better. We daily had to walk a line between "pushing reality" and "going along with him". We had to determine when to correct him (no, honey, there's not a monkey in that corner) and when to go along with it (it's okay, I'll take the snake out of the room). We learned pretty quickly the more we tried to push that we were his parents the more agitated and terrified he got. Those times, he did best to just give him space (as much as we could safely)and try to gently find a "connection point"--some frame of reference that helped to bring him back to reality. Sometimes he was hilarious. Sometimes he was terrifying.
Blessing--the worst episode while we were still at Le Bonheur lasted 20 minutes. Let me just say, Isaiah thought we were strangers there to hurt him and he was beyond wide-eyed terrified and shaking. We were trying everything we could to help him find that connection point but nothing worked. He wouldn't answer us or do anything we asked. We had to let him walk around his room and try to give him space. Finally, he sat on the couch with us in his room. Now, remember...he can't see anything! The Lord prompted me to remind Isaiah of lunch earlier that day. See, at lunch it was just the two of us, and we called it a "lunch date". While he ate, the Lord impressed upon me to get out the hymnal that we just "happened" to bring from home and to sing some songs to him. During one of the songs, he joined me in singing. So, as he is struggling in this episode, I reminded him of having a lunch date with his mommy that day. He remembered that. I reminded him of singing with her. He remembered that. So, I started singing "Power in the Blood"...that was the song. As I started singing, he again immediately joined in on his lines. I sang the whole song with him. By the end of the song, he was completely back to himself. He knew who he was, where he was, and who we were. There is no special power to that song, but the Lord used it mightily to restore our son that day!
After he got to a regular room, we also began to get him up. First to stand by the bed and then to take a few steps. Like with his other surgeries, he needed to relearn his coordination and balance. We noticed that he walked better while singing, so as we were walking him down the hallways we sang a Veggie Tales song "Keep Walking" and "I Walk By Faith". We prayed that not only would it help Isaiah but that it would encourage other patients, their families, and the nurses. The OT/PT nurses had him singing "Father Abraham" as well. He began those services as well as Speech (for memory) while at Le Bonheur. These would carry over to St. Jude once we were released. The last several days at Le Bonheur were filled with sodium checks, rehab services, and some carry-overs from ICU. These included off/on fevers, short, shallow breathing, and pain in his left ankle. The fevers were explained that it resulted from the area of brain traumatized by surgery. The shallow breathing was looked at by chest x-ray, which came back clear. And the ankle pain was thought to be result from a blown IV and another attempted IV stick. As we left Le Bonheur 11 days after his surgery, we knew he would be followed up at St. Jude as we have since the beginning of this journey almost 3 years prior.
I know there are many things that I am leaving out, like all the wonderful visits from friends and family, including several families from church coming and singing worship songs with us in our room, all the cards and calls of encouragement, and more. If you were part of that, we daily thank the Lord for you and pray that He continually blesses you for your generosity and willingness to follow His leading :) As we left Le Bonheur to head home, we knew the road ahead was going to be different from what we'd traveled before, but we didn't realize just how different it was going to be....
Isaiah woke up from surgery without vision. His optic nerves are healthy, there's no bleeding, no swelling that would cause it. Endocrine, neurology, and opthamology cannot explain why he cannot see. Yet, his mind supplied him images as it tried to make sense of what it sensed. He saw things that weren't there and tried to interact with them by reaching out, opening jars that weren't there, eating food that's not real, etc. What further complicates this is that he suffered from psychosis. This is from him spending 4 days in ICU immediately following surgery, his sodium levels thrown off from surgery, and because of the area of brain effected by surgery. Many times, he thought he is somewhere else. There are times when he didn't even recognize us as his parents.
The amazing blessing of this time is that even when he was not in his right mind, he was concerned with showing and leading others to Jesus and during his hardest struggles he cried out to the Lord-praying aloud for help and to glorify Him.
With not having his vision, Isaiah was forced back into an almost infant-like state. He couldn't do anything himself. We had to begin with the basics and teach him to get his hand to his mouth so he could begin to feed himself hand-held foods and be able to drink from a "sports bottle" that was really a sippy-cup with a straw. He also had to learn to feel the food against his mouth as we spoon-fed him to know when to open his mouth for a bite or a drink. Once he had that, we began to work on teaching him to hold and use a fork and spoon again. These are much harder to do when you cannot see the food that you are trying to get onto them. He had to learn to use both hands together, as they didn't seem to naturally want to, to hold the container with one and scoop with the other. At this point, we weren't even trying to check out his mobility yet.
As he was moved to a regular room and his sodium levels started to stabilize, the psychosis episodes became better. We daily had to walk a line between "pushing reality" and "going along with him". We had to determine when to correct him (no, honey, there's not a monkey in that corner) and when to go along with it (it's okay, I'll take the snake out of the room). We learned pretty quickly the more we tried to push that we were his parents the more agitated and terrified he got. Those times, he did best to just give him space (as much as we could safely)and try to gently find a "connection point"--some frame of reference that helped to bring him back to reality. Sometimes he was hilarious. Sometimes he was terrifying.
Blessing--the worst episode while we were still at Le Bonheur lasted 20 minutes. Let me just say, Isaiah thought we were strangers there to hurt him and he was beyond wide-eyed terrified and shaking. We were trying everything we could to help him find that connection point but nothing worked. He wouldn't answer us or do anything we asked. We had to let him walk around his room and try to give him space. Finally, he sat on the couch with us in his room. Now, remember...he can't see anything! The Lord prompted me to remind Isaiah of lunch earlier that day. See, at lunch it was just the two of us, and we called it a "lunch date". While he ate, the Lord impressed upon me to get out the hymnal that we just "happened" to bring from home and to sing some songs to him. During one of the songs, he joined me in singing. So, as he is struggling in this episode, I reminded him of having a lunch date with his mommy that day. He remembered that. I reminded him of singing with her. He remembered that. So, I started singing "Power in the Blood"...that was the song. As I started singing, he again immediately joined in on his lines. I sang the whole song with him. By the end of the song, he was completely back to himself. He knew who he was, where he was, and who we were. There is no special power to that song, but the Lord used it mightily to restore our son that day!
After he got to a regular room, we also began to get him up. First to stand by the bed and then to take a few steps. Like with his other surgeries, he needed to relearn his coordination and balance. We noticed that he walked better while singing, so as we were walking him down the hallways we sang a Veggie Tales song "Keep Walking" and "I Walk By Faith". We prayed that not only would it help Isaiah but that it would encourage other patients, their families, and the nurses. The OT/PT nurses had him singing "Father Abraham" as well. He began those services as well as Speech (for memory) while at Le Bonheur. These would carry over to St. Jude once we were released. The last several days at Le Bonheur were filled with sodium checks, rehab services, and some carry-overs from ICU. These included off/on fevers, short, shallow breathing, and pain in his left ankle. The fevers were explained that it resulted from the area of brain traumatized by surgery. The shallow breathing was looked at by chest x-ray, which came back clear. And the ankle pain was thought to be result from a blown IV and another attempted IV stick. As we left Le Bonheur 11 days after his surgery, we knew he would be followed up at St. Jude as we have since the beginning of this journey almost 3 years prior.
I know there are many things that I am leaving out, like all the wonderful visits from friends and family, including several families from church coming and singing worship songs with us in our room, all the cards and calls of encouragement, and more. If you were part of that, we daily thank the Lord for you and pray that He continually blesses you for your generosity and willingness to follow His leading :) As we left Le Bonheur to head home, we knew the road ahead was going to be different from what we'd traveled before, but we didn't realize just how different it was going to be....
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