Zak’s surgery went very well. He was his typical self and slept for almost a week straight with a few times of being up. We noticed a huge change in him from the surgery. He significantly decreased the amount of head banging that he did. He was down to about 25% of the time. He typically is always a happy kid but it was even better. We had some follow up appointments for the kids in MN so we decided to spend an extra night at took the kids to the Zoo, Mall of America, Sea Life and a nice dinner. Typically Zak would not like loud noises and it did not bother him one bit after the surgery. It was really obvious on Vacation how great he was doing. For some reason though it was just too good to be true and starting this past Wednesday we say a change. Hoping it was just him getting ill from all the new germs and people that is what I chalked it up to. Unfortunately many of us thought the same thing and what if it is his newly placed shunt? Monday afternoon I called the neurosurgeon and they started him on a new medication and want to see us back on Wednesday for imaging and to see the doctor. Thankfully I know we are in wonderful hands with some of the best doctors we could ever ask for!
One of my friends posted this on Facebook. I have seen it before but sometimes it really just hits home. Right when you think you are getting somewhere it seems like something always pops up so this was a good reminder.
11 REASONS WHY WE ROCK!
1. Because we never thought that “doing it all” would means doing this much. But we do it all, and then some.
2. Because we’ve discovered patience we never knew we had.
3. Because we are willing to do something 10 times, 1,000 times if that’s what it takes for out kids to learn something new.
4. Because we have heard the doctors tell us the worst, and we’ve refused to believe them.
5. Because we have bad days and breakdowns and bawl fests, then we pick ourselves up and keep right on going.
6. Because we manage to get ourselves together and out the door looking pretty damn good. Heck, we even make sweatpants look active.
7. Because we are strong. Who knew we could be this strong?
8. Because we aren’t just mothers, fathers, wives, husbands, cleaners, chauffeurs, cooks and people who work. We are also physical therapists, speech therapists, occupational therapists, teachers, nurses, researchers, coaches and cheerleaders.
9. Because we understand our kids better than anyone else does – even if they can’t talk or gesture or look us in the eye. We know. We just know.
10. Because just when it seems like things are going ok they’re suddenly not, but we deal. We deal even when it seems like our heads or hearts might explode
11. Because when we look at our kids we just see great kids. Not kids with labels!
Tuesday, July 30, 2013
Thursday, June 27, 2013
Lots going on
The summer is finally here and the days have been getting
away from me again. As a child you cannot wait for the days to fly by for the
school year to be over and enjoy summer. Now the days just don’t slow down. My
mom always told me there will be a day when you wish they should slow down. Why
don’t we listen more when we are kids? I only wish there was one more day in the
week (or should I say weekend).
Friday, May 10, 2013
Living with a Special needs Child
I received this in an e-mail from a dear friend. I had to share this with everyone as it is so well put and truly hits home!
I am a special needs mom. And I have secrets. Things I don’t talk about and stuff that other mom’s don’t know,or may have forgotten along the way...
• Special Needs Moms are lonely. I yearn for more time with friends and family. Authentically, I have a positive attitude and most often you see me smiling. I may even look like I have this SuperMom thing down, am super busy, and have enough help, but I am lonely. Being a Special Needs Mom doesn't leave me the time to nurture and maintain the relationships I really need.I could get super detailed here about the hands-on caring for my child ( Do you remember when your kids were toddlers? That hovering thing you had to do? It’s that plus some.) The plus-some includes spreading my Mom love around to my other child and my husband, who on a daily basis are put on hold, waiting for my attention.I don’t have much time to call or email my friends and even family...and if they don’t call or email me, well then I feel massive guilt about the time that has passed. More negative stuff that I pile on my shoulders. Getting out is tough. I really miss the day’s when I had playgroups with other Mom’s, open-house style, dropping in and drinking coffee at a friends’ kitchen table with my child playing nearby.
• Special Needs Moms have to work extra hard to preserve their marriage. This goes with counter-balancing the high stress of special needs parenting and directly combats the sky-high divorce rates for special needs families. I put extra pressure on my husband, he is my best friend and sometimes I expect unrealistic BFF behavior from him at the end of the day( see #1). He is my hero,supportive, patient and loving- and my kids would be totally lost without him. The success of our marriage, will affect the health of our children. My husband and I haven’t spent a night away from our kids for six years, we “ date night” out of the house every few months, for a two-hour sushi date. Our marriage is a priority so we “ steal” our moments when we can.
• Special Needs Moms are not easily offended. Despite what our social media status updates say, we are vulnerable and life messes with us daily. So really, ask what you want to ask and it’s okay to start with “ I don’t really know how to say this, how to ask you..” I am especially touched when someone cares enough to ask me how my child is feeling,or how to include my child in a social gathering, meal or other event and am happy to collaborate on what will work for us.
• Special Needs Moms worry about dying. We worry about our kids getting sick and dying, we worry about our husbands dying and leaving us alone, but most of all we worry a lot under the surface, and especially about being around to care for our child.We watch people we know grieve the loss of their children and try not to think about it. On the up side-we live life fully and don’t take it for granted.
• Special Needs Moms are fluent in the transforming body language of touch. This is the first language we learn, and sometimes the language our kids know best. This therapeutic natural language can relax, redirect and heal. This should be the first language “ spoken” in every home.
• Special Needs Moms know to savor the gift of a child saying “ I Love You.” For the longest time I wasn’t sure if my daughter Zoe, would ever speak the words. As a newborn, it was her sighs of contentment, - as I held her against my breast, that told me how much she loved me. When she was a baby, it was that peaceful calm that came over her, when I carried her in my arms. The first time she found her words, she was already a little girl, and every time she spoke them I cried. She is ten now, and her words, even more tender and wise. I leaned into her at bedtime the other night, as her hand reached up, caressing my cheek, she whispered...“ I love you Mom, for taking such good care of me.”
I am a special needs mom. And I have secrets. Things I don’t talk about and stuff that other mom’s don’t know,or may have forgotten along the way...
• Special Needs Moms are lonely. I yearn for more time with friends and family. Authentically, I have a positive attitude and most often you see me smiling. I may even look like I have this SuperMom thing down, am super busy, and have enough help, but I am lonely. Being a Special Needs Mom doesn't leave me the time to nurture and maintain the relationships I really need.I could get super detailed here about the hands-on caring for my child ( Do you remember when your kids were toddlers? That hovering thing you had to do? It’s that plus some.) The plus-some includes spreading my Mom love around to my other child and my husband, who on a daily basis are put on hold, waiting for my attention.I don’t have much time to call or email my friends and even family...and if they don’t call or email me, well then I feel massive guilt about the time that has passed. More negative stuff that I pile on my shoulders. Getting out is tough. I really miss the day’s when I had playgroups with other Mom’s, open-house style, dropping in and drinking coffee at a friends’ kitchen table with my child playing nearby.
• Special Needs Moms have to work extra hard to preserve their marriage. This goes with counter-balancing the high stress of special needs parenting and directly combats the sky-high divorce rates for special needs families. I put extra pressure on my husband, he is my best friend and sometimes I expect unrealistic BFF behavior from him at the end of the day( see #1). He is my hero,supportive, patient and loving- and my kids would be totally lost without him. The success of our marriage, will affect the health of our children. My husband and I haven’t spent a night away from our kids for six years, we “ date night” out of the house every few months, for a two-hour sushi date. Our marriage is a priority so we “ steal” our moments when we can.
• Special Needs Moms are not easily offended. Despite what our social media status updates say, we are vulnerable and life messes with us daily. So really, ask what you want to ask and it’s okay to start with “ I don’t really know how to say this, how to ask you..” I am especially touched when someone cares enough to ask me how my child is feeling,or how to include my child in a social gathering, meal or other event and am happy to collaborate on what will work for us.
• Special Needs Moms worry about dying. We worry about our kids getting sick and dying, we worry about our husbands dying and leaving us alone, but most of all we worry a lot under the surface, and especially about being around to care for our child.We watch people we know grieve the loss of their children and try not to think about it. On the up side-we live life fully and don’t take it for granted.
• Special Needs Moms are fluent in the transforming body language of touch. This is the first language we learn, and sometimes the language our kids know best. This therapeutic natural language can relax, redirect and heal. This should be the first language “ spoken” in every home.
• Special Needs Moms know to savor the gift of a child saying “ I Love You.” For the longest time I wasn’t sure if my daughter Zoe, would ever speak the words. As a newborn, it was her sighs of contentment, - as I held her against my breast, that told me how much she loved me. When she was a baby, it was that peaceful calm that came over her, when I carried her in my arms. The first time she found her words, she was already a little girl, and every time she spoke them I cried. She is ten now, and her words, even more tender and wise. I leaned into her at bedtime the other night, as her hand reached up, caressing my cheek, she whispered...“ I love you Mom, for taking such good care of me.”
Grandpa we love you!
Grandpa you will be remembered in our hearts forever! With God if where you are - a blessing to have you an angel in our lives. We know you have now joined many that are watching over Zak and Callie.
When ever Zak is playing by him self and starts to giggle we ask him who is playing with him. We typically say names of those that have passed and played such and important role in our lives. Today Zak was giggling playing alone on the mat. Although he was not alone at all. I asked him if he was playing with Grandpa Striegel and I have never heard him giggle so loud. This happened 3 times. Thank you Grandpa for coming to watch over us! We love you!
May 19, 1928 – May 8, 2013
George Louis Striegel, age 84, went to be with his Heavenly Father on Wednesday, May 8, 2013. He was born on May 19, 1928 in Butternut, the son of George Paul and Clara (Kuehl) Striegel. His early childhood was spent living in Butternut with his mother's family due to her untimely death. He attended school in Butternut and Park Falls. His high school years were during WWII and George and several other local boys worked on the ships on the Great Lakes. He went from Able Body Seaman to Wheelsman and sailed on the William Payne, the James Ferris, and the Frank Armstrong as a Merchant Marine. The Great Lakes ships remained in his heart forever. George began work for the Flambeau Paper Mill in Park Falls in 1950 and worked there for 42 years. On September 1, 1950 George married Shirley Striegel in Park Falls. He was a city alderman for 22 years, an officer of the Price County Labor Committee, and officer in the Local 445 Paper Workers Union, and held several positions on the board of the Park Falls Credit Union for nearly 50 years.He is survived by his wife Shirley of Park Falls; three children: Susan (Mike) Mattson of Eau Claire, Kathy (Dan) Teeters of Wausau, and Scott (Barbara) Striegel of Wausau; three grandchildren: Chris (Annie) Teeters, Jessica (Todd) Stewart, and Robert (Kimberly) Stockfleth; three great-grandchildren: Zachary and Callie Teeters, and Clara Stockfleth; his brother Doug (Bernie) Striegel of Park Falls; and many nieces, nephews, and other relatives and friends.
He was preceded in death by his parents; his stepmother, Lorraine; his brother, Larry; his sister, Harriet Riechoff; an infant brother and sister; and his granddaughter, Sarah Stockfleth.
Funeral services will be held on Monday, May 13, 2013 at 2 p.m. from Peace Lutheran Church in Park Falls. Rev. Gary Lodholz will officiate.Burial will follow at Nola Cemetery in Park Falls
A visitation will be held on Monday at the church from 12 p.m. until the hour of the service.
The Novitzke Funeral Home is assisting the family.
In lieu of flowers, memorials to the Teeters Family 3rd Party Special Needs Trust would be appreciated
When ever Zak is playing by him self and starts to giggle we ask him who is playing with him. We typically say names of those that have passed and played such and important role in our lives. Today Zak was giggling playing alone on the mat. Although he was not alone at all. I asked him if he was playing with Grandpa Striegel and I have never heard him giggle so loud. This happened 3 times. Thank you Grandpa for coming to watch over us! We love you!
May 19, 1928 – May 8, 2013He was preceded in death by his parents; his stepmother, Lorraine; his brother, Larry; his sister, Harriet Riechoff; an infant brother and sister; and his granddaughter, Sarah Stockfleth.
Funeral services will be held on Monday, May 13, 2013 at 2 p.m. from Peace Lutheran Church in Park Falls. Rev. Gary Lodholz will officiate.Burial will follow at Nola Cemetery in Park Falls
A visitation will be held on Monday at the church from 12 p.m. until the hour of the service.
The Novitzke Funeral Home is assisting the family.
In lieu of flowers, memorials to the Teeters Family 3rd Party Special Needs Trust would be appreciated
A link to Grandpa's obituary:
Monday, April 8, 2013
Updates - long over due!
Life has been a blur lately - so sorry for not keeping this updated.
Callie just had her second surgery for her skull. This was a planned surgery. We thought she may need a third surgery, but the doctor told us not in the near future (this being the next year). What a relief. So for those I have not kept in the loop very well. Callie was diagnosed with Craniosynostosis last summer. This means the skull is not growing, but her brain is. We got a second option at Gillette Children's in MN and feel in love with the doctors, nurses and everyone involved. We were told she would also need neck surgery at the time as she had similarities to Zak's neck. In October we did the first surgery on the neck and back of the head. They removed a little piece of bone in her neck as it was compressing the spinal cord. Then they took the back part of the skull and pulled it back to make more room. The surgery went great but she had a few infections she ended up having to fight. We noticed a lot of changes with her first skull surgery as far as movement and relief.Next was the heart,we always knew she was a candidate for heart surgery as well and since she was finally big enough and would be having more surgery and sedation it was just time to get it done. She still had the hole in her heart that some babies are born with. That would need to be closed. Also, her pulmonary valve needed a little work. We had that surgery in January at Marshfield clinic, but with the Milwaukee doctors. Since we knew about the previous infection we took extra precautions with surgery and she came out great! I think the hardest part was not to rough house with her as they did open heart surgery which means they had to break the sternum. We had to wait for that to heal. The whole time we knew she would also need this skull surgery, but needed to wait for all the heart surgery to clear. This surgery went well. She had a lot of swelling which was very expected. Now time will tell as she heals. It is fun to see the swelling reduce and see what her new forehead looks like!
Zak has been doing good, although he continues to bang his head all the time. While Callie was in the clinic this time we had a monitor put in Zaks skull to monitor his pressures. This was a Teeters' first. Both kids in the hospital at the same time! We don't need to do it anytime soon, although it did go well since the staff here is so helpful! His pressures were slightly elevated so he is on a new medication for a few weeks to see if we notice any changes. We will come back for follow ups at the end of April and have a better plan then.
Callie just had her second surgery for her skull. This was a planned surgery. We thought she may need a third surgery, but the doctor told us not in the near future (this being the next year). What a relief. So for those I have not kept in the loop very well. Callie was diagnosed with Craniosynostosis last summer. This means the skull is not growing, but her brain is. We got a second option at Gillette Children's in MN and feel in love with the doctors, nurses and everyone involved. We were told she would also need neck surgery at the time as she had similarities to Zak's neck. In October we did the first surgery on the neck and back of the head. They removed a little piece of bone in her neck as it was compressing the spinal cord. Then they took the back part of the skull and pulled it back to make more room. The surgery went great but she had a few infections she ended up having to fight. We noticed a lot of changes with her first skull surgery as far as movement and relief.Next was the heart,we always knew she was a candidate for heart surgery as well and since she was finally big enough and would be having more surgery and sedation it was just time to get it done. She still had the hole in her heart that some babies are born with. That would need to be closed. Also, her pulmonary valve needed a little work. We had that surgery in January at Marshfield clinic, but with the Milwaukee doctors. Since we knew about the previous infection we took extra precautions with surgery and she came out great! I think the hardest part was not to rough house with her as they did open heart surgery which means they had to break the sternum. We had to wait for that to heal. The whole time we knew she would also need this skull surgery, but needed to wait for all the heart surgery to clear. This surgery went well. She had a lot of swelling which was very expected. Now time will tell as she heals. It is fun to see the swelling reduce and see what her new forehead looks like!
Zak has been doing good, although he continues to bang his head all the time. While Callie was in the clinic this time we had a monitor put in Zaks skull to monitor his pressures. This was a Teeters' first. Both kids in the hospital at the same time! We don't need to do it anytime soon, although it did go well since the staff here is so helpful! His pressures were slightly elevated so he is on a new medication for a few weeks to see if we notice any changes. We will come back for follow ups at the end of April and have a better plan then.
Tuesday, January 15, 2013
Callie's Surgery a Success
Callie's surgery went AMAZINGLY well! The surgeons were very happy with the outcome. It was a very long few days at the hospital. She ended up coming home on Thursday. By Friday she was already trying to crawl a little, but pain would usually kick in. Today she is all over the place. Up and down the hall and loves to hang out on the floor in her room. She is still on pain medication as she has a broken sternum from the surgery that will need to heal, however she is on a minimal amount. She has been such a trooper and we are so proud of how well she is doing!
Monday, January 7, 2013
Heart Surgery - Day of
Callie's Heart surgery went well today. The surgeons were very happy with the procedure. She was the first of 4 cases this week. The Milwaukee team comes to Marshfield for 1 week every 2 months. She was brought back around 8am. The actual surgery was about 30-60 minutes however all the prep and closing is what takes the time. They have to do an echo (heart ultrasound) before and after the surgery to get a good baseline. They also placed a chest tube for the blood in the cavity to drain alone with pacer wires. These are little wires they will pull before we go home. If they need to change the pace her heart is beating they can hook the wires up to a little device to change it. We were able to see here around 2pm. I always hate the first few hours out of surgery. They decided to leave the intubation tube in over night to help her breath. This means they need to keep her sedated. They have to figure out what the right amount of medication is to keep her sedated yet not too deep. It is always hard while she is trying to fight to wake up and is choking and coughing on the tube. By 4 they had it all figured out.
They have been watching her very closely this evening. Her blood pressure kept creeping down little by little. It is always hard trying to figure out if it is the medication, low fluid, heart rate or who know what? They gave her some extra fluid which helped, but did not completely do the trick. The surgeon just happened to be on the floor so he also came in. When she came out of surgery her heart rate was around 130. It had dropped to 113. They decided to hook up the pacer wires to help increase her heart rate back up to 130. She will stay hooked up until tomorrow. Her blood pressure also increased with the change in pace so that was all good. The PICU doctor explained it to me which really helped. He did mention this is the exact reason they put the pacer wires in. It is not uncommon to need to use them. Callie's body is getting used to her "new" heart along with the extra stress it just went through.
Also, Callie's hemoglobin has slowly been decreasing through out the day. Ideally they would like it between 10-12. She was at 8 so they decided to give her some blood. Thank you to all the people that are always donating blood. This is the second surgery in 3 months Callie has needed blood.
As I sit her and reflect on the day I am glad to say this day is almost over. I have learned so much more about a heart than I ever thought I would. Some days I wish I was a nurse just so I would know what all of this means. Other days I am so grateful I am not as it would just add worry. Thankfully we have had a great team of doctors and nurses to constantly answer "What does that mean?" I must sound like a broken record today. She really is doing well considering everything she has been through.
Tomorrow they will most likely pull Callie's breathing tube and she will lose some of the IV lines going into her body. She currently has 4 different access points to her body with 14 lines going into her. Slowly those will decrease. Some are heart medications, others are fluids, antibiotics, blood and some that I really have no idea.
As soon as she is feeling better I will post some pictures. I do not want to overwhelm any one with all the lines so I will not post any right now. Please say an extra prayer for healing and strength. For now I am going to try and get some rest among the beeps.
They have been watching her very closely this evening. Her blood pressure kept creeping down little by little. It is always hard trying to figure out if it is the medication, low fluid, heart rate or who know what? They gave her some extra fluid which helped, but did not completely do the trick. The surgeon just happened to be on the floor so he also came in. When she came out of surgery her heart rate was around 130. It had dropped to 113. They decided to hook up the pacer wires to help increase her heart rate back up to 130. She will stay hooked up until tomorrow. Her blood pressure also increased with the change in pace so that was all good. The PICU doctor explained it to me which really helped. He did mention this is the exact reason they put the pacer wires in. It is not uncommon to need to use them. Callie's body is getting used to her "new" heart along with the extra stress it just went through.
Also, Callie's hemoglobin has slowly been decreasing through out the day. Ideally they would like it between 10-12. She was at 8 so they decided to give her some blood. Thank you to all the people that are always donating blood. This is the second surgery in 3 months Callie has needed blood.
As I sit her and reflect on the day I am glad to say this day is almost over. I have learned so much more about a heart than I ever thought I would. Some days I wish I was a nurse just so I would know what all of this means. Other days I am so grateful I am not as it would just add worry. Thankfully we have had a great team of doctors and nurses to constantly answer "What does that mean?" I must sound like a broken record today. She really is doing well considering everything she has been through.
Tomorrow they will most likely pull Callie's breathing tube and she will lose some of the IV lines going into her body. She currently has 4 different access points to her body with 14 lines going into her. Slowly those will decrease. Some are heart medications, others are fluids, antibiotics, blood and some that I really have no idea.
As soon as she is feeling better I will post some pictures. I do not want to overwhelm any one with all the lines so I will not post any right now. Please say an extra prayer for healing and strength. For now I am going to try and get some rest among the beeps.
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