Okay, so the nurse I was complaining about several weeks ago is still with us for 1 and sometimes 2 day shifts a week but stopped her Sunday night shift. So far she's been able to be on time and praying it will keep up so we don't have to find a nurse to replace her. It came down to her body was not adjusting well working Sunday night and then having one day off and then switching to a day shift on Tuesday so she would sleep too late and not make it on time.
So, the nurse we LOVE is no longer with us. :( She worked Wednesday and then Thursday we received a call from the nursing company that she needed to work 11pm-7am instead of 8pm-8am. Well, that would not work for us. I need her in earlier so I can have that time to do my devotionals with the older kids, read books, and tuck them into bed. I need her to stay until 8am so that I can take the kids to school in the morning before the nurse leaves. I hated having to tell them to find us a new nurse but it's pointless to have nursing if it's not benefitting us the most even though I will truly miss her. They asked if I wanted her to go ahead and work this past Friday from 11pm-7am since they did not have time to get a new nurse to cover her shift. I said yes because we want to be able to say goodbye to her. Gage was really attached to her and so we decided to make her a card. Gage wrote it himself and then spent all evening drawing flowers and heart all over the card. Around 7pm the agency called and said that our nurse was not able to come in because she thought she was no longer with us and had already made plans for the night. Gage was crushed and so was I. We cried and cried and cried some more. We would play a game and then he would start thinking about her again and cry which would make me cry. We called and talked to Grampy to get his mind off of it...as soon as he hung up the phone he cried some more. He even decided to draw on the back of her paper 2 pictures of himself. One was of him about to cry and the other was of him crying. It broke my heart. I'm going to ask the agency this week if they can have her call me so I can see if she will come over one more time to say our goodbyes. I know she has to work her shifts around her husbands and her kids babysitter and wishes she could stay with us as well. Some nurses just really make a huge impact and become part of our family and it's hard saying goodbye. I still talk with 2 of our old nurses from Midland and I miss them as well. I will also miss my late Friday night talks with Miss Margaret.
Monday, October 25, 2010
Acceptance
Okay, I still have not found the exact words to use in this post but will try to summarize the best I can. If I took you on my 3 year journey of understanding faith, healing, and acceptance..it would be a book so here I'll just leave out most of the details and get to where I am now.
I've struggled about my faith on healing and acceptance since the day we found out Autumn had SB. I accepted her SB and the "regular" stuff to expect but continued to fight about Autumn's need for a trach and vent. It has been the thorn in my side. I've explored all the questions imaginable as to why God has allowed Autumn to be one of those cases that all SB mom's fear when they are pregnant. Why were we chosen this type of path? Was it my lack of faith? Was is because I did not pray for healing of SB while I was pregnant? Was it to teach me a lesson? Was I not doing enough for God to heal her? All kinds of crazy thoughts came to mind. I felt anger towards other SB mom's who whined about their kids may never walk and here my child could not even breathe on her own. Why not give them this task to make them more appreciative of what they have and what they could be dealing with? I was thankful for Autumn from day one so why was I being punished? At least that is how I felt at times. I felt I deserved for my daughter to be healed!
I then read the devotional that I posted a few days ago and it suddenly clicked. None of this is about me or Autumn. It's all about God's glory. I was learning about the jealous God who wants the focus on Him and not on our lives. As American Christains we are wrapped up in ourselves and what we think we deserve. Our society tells us that we deserve to be happy and not have to deal with hard issues. I can read story after story in the Bible and not one Christ follower had an easy life. They chose to devote their lives completely to God and He never promised the walk would be easy but it would be rewarding. They ALL were blessed by our loving God but the blessings came because of obedience and sacrifice. I've been focused on me and all the reasons I felt Autumn needed to be healed. If she no longer had a trach my life would be so much easier. I wouldn't have to depend on nurses, I could be an independant mother again and take my daughter wherever I wanted, whenever I wanted. My faith would also be validated in her miraculous healing and I wouldn't have to trust God about it daily. God wants me to accept EVERYTHING He places before me. He wants to watch me trust Him, depend completely on Him, and praise Him no matter what circumstances I'm going through. He has used Autumn to show me that He is real and He can sustain me daily.
As a mother I do wish Autumn did not have a disability but as a Christain it does not matter. Her body is only temporary and her soul is what matters. Why would God see a need to heal her? He said she's fearfully and wonderfully made. He did not make a mistake with her that He needs to correct. He wants me to see her through His eyes and not keep looking through worldly eyes. I've now accepted that if she has her trach for the rest of her life, I'm fine with that. Yes, as a mother I want her to have and experience everything like an able-bodied child and fit in with society. When I look through God's eyes I can see that handicap is not in His vocabulary and He views us all the same no matter what we lack to the world.
I had a friend ask if I was given a pill that would completely heal Autumn of SB would I give it to her? I responded that I did not know but probably not. I asked James the same question and he said no. My first thought wondered if it seemed cruel to not give her that "gift" if it was available and if I'd be a bad parent not to but James' answer reassured me about my thought of who are we to change the way God created Autumn? It's up to Him only to change her. It is His purpose for her to have SB and her days are planned out accordingly. Just like we chose not to give Gage growth hormones to be taller. We all have challenges we are faced with in life. Each of us were created with our specific challenges and talents to be able to overcome and use for God's glory. We have eternity to be perfect but for now we are given the chance to embrace ourselves and each other and to live our days focused on God's will for our lives and not on changing God's creations to meet the world's standards.
I know my heart with still ache at times as I watch Autumn grow, question, and be frustrated by her SB. It's only natural to feel that way as her mother and want to fix things for her. I'll just have to remain focused on God's plan for her life and look towards our heavenly goals. It's a struggle to live in a world who does not view things as God does and to stand up, support, and accept His ways. My hope is no longer in wishing she will be healed one day. My hope is that God uses our lives for His glory and that we continue to be obedient to Him and trust in His will for our lives. My hope is that the day when I see Him face to face He will say, "Well done my good and faithful servant". Those words alone are worth more than any sacrifice He will ask me to make for His sake!
I've struggled about my faith on healing and acceptance since the day we found out Autumn had SB. I accepted her SB and the "regular" stuff to expect but continued to fight about Autumn's need for a trach and vent. It has been the thorn in my side. I've explored all the questions imaginable as to why God has allowed Autumn to be one of those cases that all SB mom's fear when they are pregnant. Why were we chosen this type of path? Was it my lack of faith? Was is because I did not pray for healing of SB while I was pregnant? Was it to teach me a lesson? Was I not doing enough for God to heal her? All kinds of crazy thoughts came to mind. I felt anger towards other SB mom's who whined about their kids may never walk and here my child could not even breathe on her own. Why not give them this task to make them more appreciative of what they have and what they could be dealing with? I was thankful for Autumn from day one so why was I being punished? At least that is how I felt at times. I felt I deserved for my daughter to be healed!
I then read the devotional that I posted a few days ago and it suddenly clicked. None of this is about me or Autumn. It's all about God's glory. I was learning about the jealous God who wants the focus on Him and not on our lives. As American Christains we are wrapped up in ourselves and what we think we deserve. Our society tells us that we deserve to be happy and not have to deal with hard issues. I can read story after story in the Bible and not one Christ follower had an easy life. They chose to devote their lives completely to God and He never promised the walk would be easy but it would be rewarding. They ALL were blessed by our loving God but the blessings came because of obedience and sacrifice. I've been focused on me and all the reasons I felt Autumn needed to be healed. If she no longer had a trach my life would be so much easier. I wouldn't have to depend on nurses, I could be an independant mother again and take my daughter wherever I wanted, whenever I wanted. My faith would also be validated in her miraculous healing and I wouldn't have to trust God about it daily. God wants me to accept EVERYTHING He places before me. He wants to watch me trust Him, depend completely on Him, and praise Him no matter what circumstances I'm going through. He has used Autumn to show me that He is real and He can sustain me daily.
As a mother I do wish Autumn did not have a disability but as a Christain it does not matter. Her body is only temporary and her soul is what matters. Why would God see a need to heal her? He said she's fearfully and wonderfully made. He did not make a mistake with her that He needs to correct. He wants me to see her through His eyes and not keep looking through worldly eyes. I've now accepted that if she has her trach for the rest of her life, I'm fine with that. Yes, as a mother I want her to have and experience everything like an able-bodied child and fit in with society. When I look through God's eyes I can see that handicap is not in His vocabulary and He views us all the same no matter what we lack to the world.
I had a friend ask if I was given a pill that would completely heal Autumn of SB would I give it to her? I responded that I did not know but probably not. I asked James the same question and he said no. My first thought wondered if it seemed cruel to not give her that "gift" if it was available and if I'd be a bad parent not to but James' answer reassured me about my thought of who are we to change the way God created Autumn? It's up to Him only to change her. It is His purpose for her to have SB and her days are planned out accordingly. Just like we chose not to give Gage growth hormones to be taller. We all have challenges we are faced with in life. Each of us were created with our specific challenges and talents to be able to overcome and use for God's glory. We have eternity to be perfect but for now we are given the chance to embrace ourselves and each other and to live our days focused on God's will for our lives and not on changing God's creations to meet the world's standards.
I know my heart with still ache at times as I watch Autumn grow, question, and be frustrated by her SB. It's only natural to feel that way as her mother and want to fix things for her. I'll just have to remain focused on God's plan for her life and look towards our heavenly goals. It's a struggle to live in a world who does not view things as God does and to stand up, support, and accept His ways. My hope is no longer in wishing she will be healed one day. My hope is that God uses our lives for His glory and that we continue to be obedient to Him and trust in His will for our lives. My hope is that the day when I see Him face to face He will say, "Well done my good and faithful servant". Those words alone are worth more than any sacrifice He will ask me to make for His sake!
Monday, October 18, 2010
Have LOTS to blog about!
To begin, it's been a busy weekend here. Friday after school my SIL and I took the kids (minus Autumn) and my cousin, Jordyn, to Fright Fest at Six Flags (pictures out of order again..i'll remember to do it right one of these days). We were there from open 6pm to close 11pm. Gage was excited to see all the people dressed up scary but he did not realize they would look as scary as they did (really was not too bad) so he was a little scared most of the time. It was a perfect night for Six Flags. The weather was perfect and it was not very busy and most rides did not even have a line. We had a great time. We did not get home until midnight though and I was in bed at 1am.
Saturday my SIL and I took all our kids to Kadee Farm in Greenville. They had face painting, pony rides, a petting zoo, jumper, hay jump, hay ride, tractor/train ride, maze, games, jeep ride, and swings. It was not glamorous but it had plenty for the kids to do and they had a good time. Autumn enjoyed watching all the activities and was able to join in swinging with the other kids. Their pumpkin selection was not that great so we bought baby pumpkins there and then went to a church pumpkin patch to pick out our larger pumpkins to carve. We were gone about 4 hours and then my SIL was so awesome and took Madison and Gage for the evening. I also had our nurse (the one we love) volenteer to come in and work saturday evening. So, James and I went to church that evening and then my friend, Brooke, invited me to her house for some baking fun. I rarely get to go out without kids so it was nice to get out of the house and just have fun. She taught me how to bake from scratch (I'm a box girl) and we made white cupcakes with strawberry frosting, red velvet cupcakes, and chocolate mint cakes. We wanted to bake more but since I did not get to her until 9:30pm and it was late we baked what we could. ;) I left her house at 1am. My nurse and I though sometimes get into talking about husbands, kids, God, etc so I was up until 3:30am talking with her. I knew I would regret it later. ;) I got 4 hours of sleep that night and yesterday could not fall asleep when I layed down for my nap. My Sunday night nurse quit her night shift so I was on nurse duty last night. I hoped to get to bed early but Autumn did not fall asleep until 10:45pm (she's been taking late evening naps) and I had to wait until she went to bed to start her breathing treatment (if we give it to her while she's awake she will dump it out). I was able to get to bed a little after 11pm, I tossed and turned all night, and then up at 6:45am this moring. I'm finally feeling my lack of sleep and so being completely unproductive today...I don't have to clean my house every week do I??? More below after the weekend pics....
So, that is the update on the weekend. Here is now the update on Autumn: Not sure what last update I gave on her vomiting. I think it was that we tried a different formula and that was a fail as well. So, here's my latest theory. I started seeing that her vomiting was increasing as her meds were increasing. I was convinced maybe it was her phenobarbitol that was causing an interaction with her meds because all of this started shortly after her second seizure and she was place on phenobarb. I can't take away her phenobarb meds though since it's a narcotic and she has to be slowly weaned from it. I decided I'd take away her reflux meds and see if we saw a difference. So Thursday evening we stopped her prevacid and zantac. Friday she spit up a little at noon and that was it. Saturday she spit up a little at her 8pm feed. Sunday she vomited 2 times (very small) after her noon feed. Well, I've noticed when we "burp" her stomach (this is where we drain some formula and air bubbles using a tube and syringe through her button) the stomach contents were more broken down than they normally are. So, I believe (could be completely wrong) that the prevacid and zantac are of course made to lower the stomach acid to prevent reflux, well...she needs that stomach acid though to break her food down and seems to me the food was not getting broken down enough and causing her to vomit. She still gags (mainly after a cough or when she needs suctioning) but since her food was not being broken down enough she was vomiting it up. I also did some research on stomach acid production and when you feel hungry or start to smell food your stomach acid begins the process (three stages of the process to breakdown food). Well, since Autumn does not feel hungry or smell food her stomach acid production does not start it's process until her formula hits her stomach (basically she's skipping stage 1). So, I feel we are maybe given her too much too soon and it takes time for the process to begin and with the added meds she was not producing the amount of stomach acid she needs to break down her food, making her sick and vomiting. We have started doing only 2 ounces at a time and waiting 15 minutes in between to see if this helps her formula to be broken down more. We still have not completely solved our issue yet but feel we may be on the right track...we have at least brought the vomiting down from 4 times a day to once a day. ;) I want to talk with the drs. about seeing if there is a formula that is easier to break down and then seeing what to do with her meds. I think she still needs a little for some reflux but not as much as she's getting since the nissen has helped stop the reflux into the esophagus and see if there is a med to help break down her food for her better or if a new formula will be enough. I could be completely wrong but at least I have a new theory to ask the drs. about.
Autumn has been doing so great off her vent and we've been trying to go from 7 hours off a day to 8 (we put her back on when she eats so if we can figure out how to stop that we can get her off even more). Her sats stay around 97-100 while off her vent and about 90% of her desats are due to her pulse ox not reading correctly. The other 10% is when she needs suctioning after she coughs or gags. She's doing great with her modified speaking valve as far as breathing but not with making noises. Every day I put a valve that has not been modified on her to help her learn to breathe out of her nose/mouth and not her trach. She struggles with it on and so it's a slow process. We've made it up to 5 mins with it on so that is good news. We are having issues with her naps though (good but annoying issues). She breaths more with her nose and mouth so the vent picks it up as there being a leak in the tubing and will alarm over and over again. So, yesterday we allowed her to sleep off her vent and she stayed at 95%..she did have 2 desats but came right back up on her own. It's thrilling to see her progress since I could not imagine what it would be like without a vent. ;) She is scheduled for a sleep study on Nov.2nd to hopefully move her vent setting WAY down. She thrilled me yesterday as well by wheeling her stander forward 3 times all by herself but she only did it once and would not do it again....stubborn child. At least I know she CAN do it if she wants.
Lastly, God has been really tugging and pulling at my heart. He's been changing my thoughts and making me understand more of His ways. I've had this ongoing struggle with faith, healing, and acceptance and trying to understand it all and how they all work together. I know this is why I've had a hard time sleeping. My thoughts are filled with excitement on what he's revealing to me and fears of where he's leading me. I've learned God just shows me a little more of Himself at a time because I can not handle or comprehend all He wants to teach me all at once. God's also been asking me to do some things in my life and I'm struggling with this. Satan is filling me with fears and doubts to where I know God is calling me. I'm in a time of prayer right now. I know what should be done but it's me not wanting to step out in faith and follow God's calling. I'm in a spiritual battle. It's one of those things that when you finally start to get how God works you know that He's going to ask you to give up more than you want. Am I ready for that? Not sure so that is why I'm in this time of prayer. I'll share more of what God has revealed to me once I can figure out how to put into words without being confusing and all over the place and the excitement I have in another blog post. I'll share the spiritual battle once my stubbornness gets broken down by God's tender requests...I know He's going to win in the end but I'm fighting to see how long I can stall His request and try to convince Him otherwise. Yes, even I laugh at myself.
Saturday my SIL and I took all our kids to Kadee Farm in Greenville. They had face painting, pony rides, a petting zoo, jumper, hay jump, hay ride, tractor/train ride, maze, games, jeep ride, and swings. It was not glamorous but it had plenty for the kids to do and they had a good time. Autumn enjoyed watching all the activities and was able to join in swinging with the other kids. Their pumpkin selection was not that great so we bought baby pumpkins there and then went to a church pumpkin patch to pick out our larger pumpkins to carve. We were gone about 4 hours and then my SIL was so awesome and took Madison and Gage for the evening. I also had our nurse (the one we love) volenteer to come in and work saturday evening. So, James and I went to church that evening and then my friend, Brooke, invited me to her house for some baking fun. I rarely get to go out without kids so it was nice to get out of the house and just have fun. She taught me how to bake from scratch (I'm a box girl) and we made white cupcakes with strawberry frosting, red velvet cupcakes, and chocolate mint cakes. We wanted to bake more but since I did not get to her until 9:30pm and it was late we baked what we could. ;) I left her house at 1am. My nurse and I though sometimes get into talking about husbands, kids, God, etc so I was up until 3:30am talking with her. I knew I would regret it later. ;) I got 4 hours of sleep that night and yesterday could not fall asleep when I layed down for my nap. My Sunday night nurse quit her night shift so I was on nurse duty last night. I hoped to get to bed early but Autumn did not fall asleep until 10:45pm (she's been taking late evening naps) and I had to wait until she went to bed to start her breathing treatment (if we give it to her while she's awake she will dump it out). I was able to get to bed a little after 11pm, I tossed and turned all night, and then up at 6:45am this moring. I'm finally feeling my lack of sleep and so being completely unproductive today...I don't have to clean my house every week do I??? More below after the weekend pics....
So, that is the update on the weekend. Here is now the update on Autumn: Not sure what last update I gave on her vomiting. I think it was that we tried a different formula and that was a fail as well. So, here's my latest theory. I started seeing that her vomiting was increasing as her meds were increasing. I was convinced maybe it was her phenobarbitol that was causing an interaction with her meds because all of this started shortly after her second seizure and she was place on phenobarb. I can't take away her phenobarb meds though since it's a narcotic and she has to be slowly weaned from it. I decided I'd take away her reflux meds and see if we saw a difference. So Thursday evening we stopped her prevacid and zantac. Friday she spit up a little at noon and that was it. Saturday she spit up a little at her 8pm feed. Sunday she vomited 2 times (very small) after her noon feed. Well, I've noticed when we "burp" her stomach (this is where we drain some formula and air bubbles using a tube and syringe through her button) the stomach contents were more broken down than they normally are. So, I believe (could be completely wrong) that the prevacid and zantac are of course made to lower the stomach acid to prevent reflux, well...she needs that stomach acid though to break her food down and seems to me the food was not getting broken down enough and causing her to vomit. She still gags (mainly after a cough or when she needs suctioning) but since her food was not being broken down enough she was vomiting it up. I also did some research on stomach acid production and when you feel hungry or start to smell food your stomach acid begins the process (three stages of the process to breakdown food). Well, since Autumn does not feel hungry or smell food her stomach acid production does not start it's process until her formula hits her stomach (basically she's skipping stage 1). So, I feel we are maybe given her too much too soon and it takes time for the process to begin and with the added meds she was not producing the amount of stomach acid she needs to break down her food, making her sick and vomiting. We have started doing only 2 ounces at a time and waiting 15 minutes in between to see if this helps her formula to be broken down more. We still have not completely solved our issue yet but feel we may be on the right track...we have at least brought the vomiting down from 4 times a day to once a day. ;) I want to talk with the drs. about seeing if there is a formula that is easier to break down and then seeing what to do with her meds. I think she still needs a little for some reflux but not as much as she's getting since the nissen has helped stop the reflux into the esophagus and see if there is a med to help break down her food for her better or if a new formula will be enough. I could be completely wrong but at least I have a new theory to ask the drs. about.Autumn has been doing so great off her vent and we've been trying to go from 7 hours off a day to 8 (we put her back on when she eats so if we can figure out how to stop that we can get her off even more). Her sats stay around 97-100 while off her vent and about 90% of her desats are due to her pulse ox not reading correctly. The other 10% is when she needs suctioning after she coughs or gags. She's doing great with her modified speaking valve as far as breathing but not with making noises. Every day I put a valve that has not been modified on her to help her learn to breathe out of her nose/mouth and not her trach. She struggles with it on and so it's a slow process. We've made it up to 5 mins with it on so that is good news. We are having issues with her naps though (good but annoying issues). She breaths more with her nose and mouth so the vent picks it up as there being a leak in the tubing and will alarm over and over again. So, yesterday we allowed her to sleep off her vent and she stayed at 95%..she did have 2 desats but came right back up on her own. It's thrilling to see her progress since I could not imagine what it would be like without a vent. ;) She is scheduled for a sleep study on Nov.2nd to hopefully move her vent setting WAY down. She thrilled me yesterday as well by wheeling her stander forward 3 times all by herself but she only did it once and would not do it again....stubborn child. At least I know she CAN do it if she wants.
Lastly, God has been really tugging and pulling at my heart. He's been changing my thoughts and making me understand more of His ways. I've had this ongoing struggle with faith, healing, and acceptance and trying to understand it all and how they all work together. I know this is why I've had a hard time sleeping. My thoughts are filled with excitement on what he's revealing to me and fears of where he's leading me. I've learned God just shows me a little more of Himself at a time because I can not handle or comprehend all He wants to teach me all at once. God's also been asking me to do some things in my life and I'm struggling with this. Satan is filling me with fears and doubts to where I know God is calling me. I'm in a time of prayer right now. I know what should be done but it's me not wanting to step out in faith and follow God's calling. I'm in a spiritual battle. It's one of those things that when you finally start to get how God works you know that He's going to ask you to give up more than you want. Am I ready for that? Not sure so that is why I'm in this time of prayer. I'll share more of what God has revealed to me once I can figure out how to put into words without being confusing and all over the place and the excitement I have in another blog post. I'll share the spiritual battle once my stubbornness gets broken down by God's tender requests...I know He's going to win in the end but I'm fighting to see how long I can stall His request and try to convince Him otherwise. Yes, even I laugh at myself.
Thursday, October 14, 2010
My Utmost for His Highest
God lead me to grab one of my husband's book on the shelves and thumb through it. This is the page that caught my eye.
"He made His disciples get into the boat and go before Him to the other side...." Mark 6:45
God's purpose or Mine?
We tend to think that if Jesus Christ compels us to do something and we are obedient to Him, He will lead us to great success. We should never have the thought that our dreams of success are God's purpose for us. In fact, His purpose may be exactly the opposite. We have the idea that God is leading us toward a particular end or a desired goal, but He is not. The question of whether or not we arrive at a particular goal is of little importance, and reaching it becomes merely an episode along the way. What we see as only the process of reaching a particular end, God sees as the goal itself.
What is my vision of God's purpose for me? Whatever it may be, His purpose is for me to depend on Him and on His power now. If I can stay calm, faithful, and unconfused while in the middle of the turmoil of life, the goal of the purpose of God is being accomplished in me. God is not working toward a particular finish--His purpose is the process itself. What He desires for me is that I see "Him walking on the sea" with no shore, no success, nor goal in sight, but simply having the absolute certainty that everything is all right because I see "Him walking on the sea" (6:49). It is the process, not the outcome, that is glorifying to God.
God's training is for now, not later. His purpose is for this very minute, not for sometime in the future. We have nothing to do with what will follow our obedience, and we are wrong to concern ourselves with it. What people call preparation, God sees as the goal itself.
God's purpose is to enable me to see that He can walk on the storms of my life right now. If we have a further goal in mind, we are not paying enough attention to the present time. However, if we realize that moment-by-moment obedience is the goal, then each moment as it comes is precious.
I've been getting frustrated lately about Autumn's lack of goals. This is a reminder for me to stop putting so much pressure on God, Autumn, or myself when these goals are not reached on my time-table. It's not about about when God heals Autumn or helps her meet her milestones but about the my obedience to Him each and everyday. My heart longs to give Him the glory and I would love to get on here and say "It's another miracle....God healed Autumn from _____(fill in the space)" and show His awesome healing powers. It's about me getting on here and giving God the glory by saying "God got us through another day and He has remained faithful to us". I want this big bang glory for Him because that is what He deserves but I'm forgetting that the everyday walk of our lives is giving Him the glory He desires...that we remain obedient to Him no matter what type of day we had. Lord, help me focus on the journey and not what the ending is about and thanks once again for showing me what I was searching for today. Love you!
Sunday, October 10, 2010
SB Awareness thoughts
I was reading another SB mom's thoughts about SB Awareness and what the awareness means to her. She said my thoughts exactly! It is about teaching women to take folic acid to hopefully prevent SB but when you believe God does create EVERY human being just the way he planned then you know he's going to form that child with SB whether you took your mega doses of folic acid or not. Awareness to me is about educating women that when you are given a child with SB that you NEVER give up on them and just give them a chance at life (this is the case for all disabilities). Some parents abort or "let go" of their babies gives because of promises doctors have given them. Doctors will tell you that your child will never walk, never eat normally, never be potty trained, never breathe on their own, etc. Only God knows what He's going to allow your child to do! Also, we hear those words and immediately think that our child will not have quality of life. Maybe to us we see it that way but God does not. Autumn is the perfect example of this. She's not able to walk, she's not able to eat by mouth, she needs a trach and vent to help her breathe but does she have quality of life...ABSOLUTELY!!! She acts like a regualr 2 year old...army crawls/rolls to get into EVERYTHING! She throws a tantrum when she does not get what she wants. She ignores us or pushes us out of her way when are bothering her. She gets mad at her siblings. She claps, plays games, and has a smile that will melt your heart. Thankfully we had AWESOME doctors and not ONE doctor gave us an option to abort or asked us to make a decision after she was born to take her off the vent and let her go. God was not going to allow us to give up on Autumn. We know He formed her to have SB for many reasons and until the day He decides he wants her home with him we will NEVER give up on her and continue this journey with her. It's not an easy road but it's been the most rewarding journey I've been on so far! Yes, I wish she was not disabled but if she wasn't I would not have the faith, joy, hope, and life I have today and for that I am thankful for her disability!
Wednesday, October 6, 2010
State Fair of Texas
Today was "Fair Day" for Rockwall ISD. They close school and give every student a fair ticket to go to the fair with their family if they chose. This is awesome for us since James works weekends and we are not able to do much as a family during the school year.
So, we all went as a family and invited our nephew, Dean to come along. As soon as we got to the fair grounds traffic was backed up and so we had to squeeze our way into the correct lane. Another car needed over as well and we let them in front of us (I always let people in because it frustrates me when others do not do it for me). So, we get up to pay our $15.00 for parking and the car that we had let in had paid it for us and told the guy to thank us for letting them in. Wow! We've done this before for others because our home church was big into doing things for others but to have someone think of us and do it for us really just changed our attitude for the day. Kindness is such a powerful thing!
The weather was just perfect for a fair day.
My nephew LOVES trains so I just had to get their picture by the train. They charged money to actually go on board and look around so we chose to skip it. ;(
James wanted to go see all the cars. The rest of us were not interested but the boys were entertained by sitting in the cars and getting their pictures made.
They have this fun pretend farm for the kids to participate in. They put on aprons, water trees, collect fruit. Feed chickens and collect eggs. Milk cows. Drive tractors to feed the cows. Plant seeds to grow veggies. At the end of collecting everything they put it in the store and then earn a dollar to buy a real snack. Very cute.
My favorite part of ANY fair is the petting zoo. I'm an animal lover so I could spend the entire day with the animals but no one else wants to stay with me that long. ;) I'd rather be IN the pens with the animals but this fair only allows you to pet through fences. :( They have lots of interesting animals you do not see everyday to look at as well as the regular everyday farm animals. I posted all the animal pictures on facebook but did not want to bore my blog friends with pictures of animals. 
This was the only pet Autumn actually touched...she loved feeling his horns. The rest of the time she was more interested in her sister or my camera.
We lasted almost 5 hours at the fair and then Autumn's pulse ox machine died and it started getting a little too warm out for her so we figured it was time to leave. We had seen the animals, eaten lunch, watched a couple of shows, rode a ride, saw the cars, ate some cotton candy, did some window shopping, got everyone a little something, and had spent enough money so we pretty much got the entire fair experience during our short time there (except for eating something fried). There was SO much more we could of done but it was enough after walking for 5 hours with 4 kids. ;)Tuesday, October 5, 2010
Vent Clinic
Today was the much anticipated vent clinic. I was sad though when I found out it was not our regular pulmonologist doing the clinic today but the other pulmo. He knows Autumn's case also but he's more reserved than our normal pulmo so I was a little bummed. Anyways, we made sure Autumn had been off her vent for 3 hours when we got there so they could get her blood gas levels while off the vent. She had her noon bottle and then fell asleep. We decided since we were IN the hospital and AT vent clinic we would just let her nap off her vent and see how she does. She stayed above 94% for 20 mins and then started dipping to 87-88 and back up. We then decided to put her on the vent (she had been awake for 7 hours before this). We left her breathrate though at 6 instead of turning it up to 20 like we normally do when she's sleeping. Her sats then stayed at 97-98% the rest of her nap. The dr. was very pleased with it and asked if we did it much at home (we've only let her take a nap once without her vent). He said to keep her at her regular rate until we have a sleep study but that if we want to "test" her limits then it's our decision since we know her best and that her CO2 levels are great and he's not worried about her retaining CO2 while sleeping off her vent. ;) We will be scheduled for a sleep study in the near future to see just how well she's doing and what steps to take from there.
Right now she's off the vent for 7 hours a day so they want us to have her off 12 hours a day if possible. Right now I always put her back on her vent when she's tube fed because she seems to gag not as much as when she's off the vent during feeds but he's hopeful we will fix the retching/vomiting issues so we can leave her off the vent all day without breaks. We discussed our issues once again and now we are going to try out some new formulas to see if that is the issue. The dr. also prescribed Zantac as well to give inbetween her prevacid doses to see if that helps. I really do not want to put her on another med so I want to try out all the formula switch first and if those do not seem to help the we can add the Zantac to see if it makes a difference. He did tell me some kids just retch and they never seem to know why and they outgrow it eventually...well, hope that's not the case for Autumn and we can fix this problem of ours. I gave her the new formula at 4pm (her worst feed always) and 8pm. She never gagged or vomited...James said around 7 or so she did gag a little but that has been it so far. Whoo Hoo! Hope it keeps up but with Autumn you just never know.
This year Autumn will NOT be getting her series of RSV shots since she's 2 now. So, we pray for a sick free winter. She's already gotten her flu shot and I really need to get the other kids and myself by to get one as well. We are kind of going into winter mode...have the hand sanitizer at the front door and having people take off their shoes when entering the house (to not track in outside germs since Autumn is a floor explorer now). We use to keep her indoors all winter but this year we may get her out a little more than usual until we start seeing more flu/RSV stuff going around then we may have to hibernate. The weather is just so perfect right now that we want to get her out while it's not hot anymore and have fun! They were pleased with her x-rays and she was clear as could be so all looks well for now. ;)
Tomorrow the kids have the day off from school for fair day. They all get a free ticket and day off to enjoy the day at the fair with their family or just stay home. So, we are all headed out to the Texas State Fair....James has never been so it should be a great time. I'm having a debate over which stroller to take. Since Autumn is only on her vent while sleeping I've stopped using our 50 lbs, $6,000 stroller and using our normal baby stroller again. Autumn LOVES the normal stroller and it's not as obvious she's got medical issues. The medical stroller holds the vent and all her equipment well but not as comfortable for Autumn. The normal stroller can hold the vent but the weight from the vent is heavy on the basket and not sure if it will hold up all day at the fair. Decisions, decisions.
Right now she's off the vent for 7 hours a day so they want us to have her off 12 hours a day if possible. Right now I always put her back on her vent when she's tube fed because she seems to gag not as much as when she's off the vent during feeds but he's hopeful we will fix the retching/vomiting issues so we can leave her off the vent all day without breaks. We discussed our issues once again and now we are going to try out some new formulas to see if that is the issue. The dr. also prescribed Zantac as well to give inbetween her prevacid doses to see if that helps. I really do not want to put her on another med so I want to try out all the formula switch first and if those do not seem to help the we can add the Zantac to see if it makes a difference. He did tell me some kids just retch and they never seem to know why and they outgrow it eventually...well, hope that's not the case for Autumn and we can fix this problem of ours. I gave her the new formula at 4pm (her worst feed always) and 8pm. She never gagged or vomited...James said around 7 or so she did gag a little but that has been it so far. Whoo Hoo! Hope it keeps up but with Autumn you just never know.
This year Autumn will NOT be getting her series of RSV shots since she's 2 now. So, we pray for a sick free winter. She's already gotten her flu shot and I really need to get the other kids and myself by to get one as well. We are kind of going into winter mode...have the hand sanitizer at the front door and having people take off their shoes when entering the house (to not track in outside germs since Autumn is a floor explorer now). We use to keep her indoors all winter but this year we may get her out a little more than usual until we start seeing more flu/RSV stuff going around then we may have to hibernate. The weather is just so perfect right now that we want to get her out while it's not hot anymore and have fun! They were pleased with her x-rays and she was clear as could be so all looks well for now. ;)
Tomorrow the kids have the day off from school for fair day. They all get a free ticket and day off to enjoy the day at the fair with their family or just stay home. So, we are all headed out to the Texas State Fair....James has never been so it should be a great time. I'm having a debate over which stroller to take. Since Autumn is only on her vent while sleeping I've stopped using our 50 lbs, $6,000 stroller and using our normal baby stroller again. Autumn LOVES the normal stroller and it's not as obvious she's got medical issues. The medical stroller holds the vent and all her equipment well but not as comfortable for Autumn. The normal stroller can hold the vent but the weight from the vent is heavy on the basket and not sure if it will hold up all day at the fair. Decisions, decisions.
Saturday, October 2, 2010
And it continues
So, all of Autumn's tests came out fine. We changed to solu-tabs prevacid. She was only getting it once daily so last Friday her pediatrician moved her back to her twice a day dose. I just KNEW this could be our answer....um no! She's vomiting 2-3 times a day still. So, we have vent clinic on Tuesday so I'm going to ask about getting her formula changed and if that does not help see about trying a new med. After that, I guess we have will run out of options except for continued prayers.
I'm excited for this upcoming vent clinic not only to talk about our vomiting issues but to make some changes with Autumn's vent settings. The dr. already told me he'd probably be ready to set up another sleep study. She never needs the vent when she is awake (except for feeds since she seems to vomit more off than on) She never desats at night either. She even took a 30 minute nap last week without the vent and never went below 94. God's working on that brain for us! Thanks for the continued prayers.
I'm excited for this upcoming vent clinic not only to talk about our vomiting issues but to make some changes with Autumn's vent settings. The dr. already told me he'd probably be ready to set up another sleep study. She never needs the vent when she is awake (except for feeds since she seems to vomit more off than on) She never desats at night either. She even took a 30 minute nap last week without the vent and never went below 94. God's working on that brain for us! Thanks for the continued prayers.
Friday, October 1, 2010
Spina Bifida Awareness Month
It's that time of year again to remind everyone just what is Spina Bifida...click http://lacywilliamsfamily.blogspot.com/2009/10/october-is-spina-bifida-awareness-month.html to learn more!
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