It's been quite a while since I've posted - so I thought I'd make an update in the same format as my last post.
Autoimmune Neutropenia - Morgan's neutropenia is still active but fortunately she has the type that she will probably go in remission from - we just don't know when. Instead of three injections a week, Morgan gets daily injections now which is helping a lot with her bone pain. Apparently, the bone marrow expands and contracts with the Neupogen and the three larger doses made her moody and we were having to do motrin/tylenol daily. Fortunately now with the daily injections, we aren't having to do pain killers all the time. The smaller dose also doesn't sting as much. There have been a couple times that we have taken Morgan off the Neupogen to see if her body could sustain normal white blood cell counts. She was much more content and in a better mood but unfortunately her ANC went back into the severe range. At our last hematology visit, our hematologist mentioned this could be something she could have until she is in adolescence. I certainly hope that is not the case but its is a much better alternative than other diseases she could have. We still do weekly blood work but we have gotten to know a lab tech that Morgan loves named Serenna. She is a Godsend!
Neupogen - I have a love/hate relationship with Neupogen. With it, Morgan does not get mouth sores, she is protected enough to be around other kids and goes to MDO twice a week in the spring and fall (MDO is her favorite thing and she is our little social butterfly). On the other hand, Neupogen causes her to be nauseous or somehow causes her not to eat much. I have talked to two pharmacists and other moms of kids with AIN that have told me nausea is a common side effect. Unfortunately, our hematologist thinks the Neupogen has nothing to do with her eating but that's a whole other story. >: / Morgan still eats no fruits and vegetables and in the last two months has dropped all meats. I'm concerned because two weeks ago she stopped eating cheese. Fortunately, she is getting protein and fat from milk so that's good. I have her on supplements to augment the nutritional gaps, which include a probiotic, fish oil, and a vitamin/mineral liquid supplement. My mother-in-law Kathy has been kind enough to buy us an antioxidant juice drink which we believe is helping her levels. All of these things are a challenge to get into her but I feel like proper nutrition is important for her to reach remission. Also, Morgan is not a happy camper when she hasn't eaten as the case with all 2 year olds!
Spiritual Growth - God is good. I know that Neutropenia plays a role in making Morgan who God wants her to be. I know that with my head but at times I have trouble embracing that in my heart. As I said in my last post, I have never been closer to God and he daily trains me to rely more him especially in my weaknesses - and there are a lot of them! I still really enjoy writing my blog www.theupwardcall.com .
Part-Time Job - I'm still doing And Sew On's social media and love working with Jennifer. She is such an inspiration to me. I'm also going to start doing bows again to help with our budget a little more.
Jeremy - My better half is doing well and puts up with me as usual. We just celebrated our 10 year anniversary. Hard to believe! I don't deserve him and probably never will. He is such a good husband and daddy. Morgan and Daddy go to look at airplanes at the airport and also go look at puppies and kitty cats at the air port on a regular basis.
Prayer Requests - Please keep us in your prayers as Morgan's neutropenia is still a mental and financial struggle for us. I struggle a lot with the stress of Morgan not eating. All in all, we have come a long way since last year at this time and we are very blessed. Thank you for your prayers and support. Above all, pray that Morgan goes into remission soon, but that God is glorified through her neutropenia in the meantime.
Friday, August 2, 2013
Sunday, March 17, 2013
Spilled Milk
It's 3 a.m. and Morgan is up because her milk spilled on her pillow. Last March at this time, I was up because Morgan had her first very painful neutropenic mouth sore - although we didn't understand what it was at the time. What prompted my post at this hour was browsing over old facebook posts from last March/April and realizing how far God has brought us since that time. Before reading those posts a few minutes ago, I was in a crummy mood about having to get up with her. Now I realize how much better our lives are now as now those mouth sores are just small scars. In retrospect, there is definitely no use in crying over spilled milk. ;)
Autoimmune Neutropenia - Morgan's neutropenia is still active but fortunately she has the type that she will probably go in remission from - we just don't know when. Morgan gets injections 3 times a week and bloodwork once a week. We are averaging about 2-3 visits to the pediatrician a week as we stay on top of bugs. We are very blessed that she has gotten nothing more than a cold or virus since starting injections. That is a HUGE reason to be thankful. We are also very fortunate that Morgan has never been to the ER. I started an AIN facebook page with over 50 AIN moms and I haven't heard of another kid that has never been to the ER - most have been over 10 times. In April, we will do another antibody test to see what the status is. Her last two weekly blood tests showed her ANC was 2300-2500 which is in normal range. The Neupogen injections are a Godsend. When we started this process, her ANC was 0, giving her no protection against the bacteria on her own body.
Spiritual Growth - My walk with the Lord has grown immensely through this trial. He has helped us every step of the way. I didn't expect for Morgan to be able to even do playdates with friends at this point and now she goes to MDO (Mother's Day Out) twice a week. God is SO good. I have started a devotional blog called The Upward Call and I love writing it. God is faithful to give me something new each week. I feel like I should write some sort of spiritual synopsis about how far God has brought me but its just not happening at 3am. So, I'll sum it up by saying that God is amazingly gracious and has led us along every step and bump in the road in this journey. He is SO God.
Mother's Day Out - Morgan is quite the extrovert to the point that her self-appointed role is to be the class greeter, hugging every classmate as they arrive. That makes me a little nervous from a neutropenic standpoint but she has done so well and the shots are doing their job. I have a lot of faith in her teacher Brooke who is also a fellow germaphobe. Morgan absolutely loves going to "school' and as this Spring Break has proved, she is not a happy camper when she can't go.
Women's Conference and Women's Ministry - I am planning a Women's Conference on April 20th, which interestingly enough, is a year from Morgan's diagnosis. The conference is entitled From Fear To Faith and the theme verse that God laid on my heart is Isaiah 41:10, "Do not fear, for I am with you. Do not be dismayed, for I am your God. I will strengthen you, I will help you. I will uphold you with my righteous right hand." I'm excited to how God will use the conference and my prayer is that our speaker will be God's mouthpiece to every woman there. A few months ago I became our church's Women's Ministry Director. I am very excited about this role and how God is leading. There are some amazing women on our team and I'm blessed to serve with them.
Part-Time Job - Due to the expenses of Neupogen, we came to the conclusion that I needed a part-time job. God provided the PERFECT opportunity. I am working at And Sew On and the owner is an amazing Christian lady that goes to Central. I am basically doing their social media from home. I am really enjoying it!
Jeremy - My better half is doing well and puts up with me as usual. He loves his job at Gessner Engineering and this year became his engineering team's lead engineer. They are getting a lot of projects in which keeps him out of trouble. Jeremy continues to be an amazing husband and daddy and is always a big help.
My Parents - Baaa (like the lamb) and Pop Pop have lived in their home in College Station for a year now. It is hard to believe and I don't know what I would do without their help. We go over there regularly and Morgan enjoys playing with their puppy Holly. "Hotty", as Morgan calls her, is a five-month old Miniature American Eskimo puppy. She is a really sweetie but is a little stubborn when it comes to potty training!
Prayer Requests - Please keep us in your prayers as Morgan's neutropenia is still a mental and financial struggle for us. I think I have a layer of stress that normally wouldn't be there because of her disease in general, her shots, blood draws and dr's appointments. This puts stress on our family as a whole. All in all, we have come a long way since last year at this time and we are very blessed. Thank you for your prayers and support. Above all pray that Morgan goes into remission soon, but that God is glorified through her neutropenia in the meantime.
Morgan is 27 months here.
Autoimmune Neutropenia - Morgan's neutropenia is still active but fortunately she has the type that she will probably go in remission from - we just don't know when. Morgan gets injections 3 times a week and bloodwork once a week. We are averaging about 2-3 visits to the pediatrician a week as we stay on top of bugs. We are very blessed that she has gotten nothing more than a cold or virus since starting injections. That is a HUGE reason to be thankful. We are also very fortunate that Morgan has never been to the ER. I started an AIN facebook page with over 50 AIN moms and I haven't heard of another kid that has never been to the ER - most have been over 10 times. In April, we will do another antibody test to see what the status is. Her last two weekly blood tests showed her ANC was 2300-2500 which is in normal range. The Neupogen injections are a Godsend. When we started this process, her ANC was 0, giving her no protection against the bacteria on her own body.
Spiritual Growth - My walk with the Lord has grown immensely through this trial. He has helped us every step of the way. I didn't expect for Morgan to be able to even do playdates with friends at this point and now she goes to MDO (Mother's Day Out) twice a week. God is SO good. I have started a devotional blog called The Upward Call and I love writing it. God is faithful to give me something new each week. I feel like I should write some sort of spiritual synopsis about how far God has brought me but its just not happening at 3am. So, I'll sum it up by saying that God is amazingly gracious and has led us along every step and bump in the road in this journey. He is SO God.
Mother's Day Out - Morgan is quite the extrovert to the point that her self-appointed role is to be the class greeter, hugging every classmate as they arrive. That makes me a little nervous from a neutropenic standpoint but she has done so well and the shots are doing their job. I have a lot of faith in her teacher Brooke who is also a fellow germaphobe. Morgan absolutely loves going to "school' and as this Spring Break has proved, she is not a happy camper when she can't go.
Women's Conference and Women's Ministry - I am planning a Women's Conference on April 20th, which interestingly enough, is a year from Morgan's diagnosis. The conference is entitled From Fear To Faith and the theme verse that God laid on my heart is Isaiah 41:10, "Do not fear, for I am with you. Do not be dismayed, for I am your God. I will strengthen you, I will help you. I will uphold you with my righteous right hand." I'm excited to how God will use the conference and my prayer is that our speaker will be God's mouthpiece to every woman there. A few months ago I became our church's Women's Ministry Director. I am very excited about this role and how God is leading. There are some amazing women on our team and I'm blessed to serve with them.
Part-Time Job - Due to the expenses of Neupogen, we came to the conclusion that I needed a part-time job. God provided the PERFECT opportunity. I am working at And Sew On and the owner is an amazing Christian lady that goes to Central. I am basically doing their social media from home. I am really enjoying it!
Jeremy - My better half is doing well and puts up with me as usual. He loves his job at Gessner Engineering and this year became his engineering team's lead engineer. They are getting a lot of projects in which keeps him out of trouble. Jeremy continues to be an amazing husband and daddy and is always a big help.
My Parents - Baaa (like the lamb) and Pop Pop have lived in their home in College Station for a year now. It is hard to believe and I don't know what I would do without their help. We go over there regularly and Morgan enjoys playing with their puppy Holly. "Hotty", as Morgan calls her, is a five-month old Miniature American Eskimo puppy. She is a really sweetie but is a little stubborn when it comes to potty training!
Prayer Requests - Please keep us in your prayers as Morgan's neutropenia is still a mental and financial struggle for us. I think I have a layer of stress that normally wouldn't be there because of her disease in general, her shots, blood draws and dr's appointments. This puts stress on our family as a whole. All in all, we have come a long way since last year at this time and we are very blessed. Thank you for your prayers and support. Above all pray that Morgan goes into remission soon, but that God is glorified through her neutropenia in the meantime.
Morgan is 27 months here.
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