Tonight I sit here as Callie Giggles. I love to hear her sounds. It is so nice to see her happy given all this poor little girl has gone though. She is a fighter and always will be. I really am so proud of her.
Tomorrow is her big day. She will be having her Chiair Malformation Surgery which 'is a malformation of the brain. It consists of a downward displacement of the cerebellar tonsils through the foramen magnum (the opening at the base of the skull), sometimes causing non-communicating." (Wikipedia) They will be removing a piece of Callie's skull and pulling it back in the bottom to make a little more room. At the same time she has this done she will have her shunt moved to her lower back. This way there will not be anything in her head for hardware. Hopefully this will prevent infection as well.
Yesterday we were hoping to get a PICC line (IV line she can go home on) put in, however do to a really busy OR they did not do. Instead she got it put in today. Thankfully this time it was the first try and success!! What a little trooper and a Great Doctor!
Not it is time for lots of prayers and quick healing!
Tuesday, December 10, 2013
Saturday, December 7, 2013
Things always happen for a Reason
Things always happen for a Reason.. that is the phrase that is getting me through this week.
When Callie was admitted again to the hospital I did not understand why our little girl needed to go through this. I still don't and really don't think I ever will. But what I do know is she is in great hands and if we have to be in a hospital I know this is the place to be. As of now the thought is she had a seizure from an infection. There really is no way to prove this, but it is what makes the most sense. I pray every day that is the case so she does not have a "seizure disorder" to add to her list of diagnosis. She has been quite spunky and awake (most at night and early morning). She tends to sleep away the afternoons.
Our week started on Monday with Zak coming to visit Callie since he had appointments. Chris stayed with Callie and I brought Zak home. The snow started to fall about 1 -2 hours before appointments were over so it did make for a longer drive home. As much as I love a white Christmas I just wish the snow would find a way to stay off the roads :) If only.. right! I was busy getting everything in line at home and getting Zak ready for his surgery on Thursday. Everything was packed up for me to come back to Minnesota on Wednesday so we cold do another kid swap and I got a phone call from Zak's Surgeon. It was the dreaded phone call that the Surgeon could not do his surgery as he was having some of his own Medical Issues. My heart broke in that split second that the doctor told us he had a back up plan and a different doctor was going to take his place and still operate. After I got done with my "interview" of questions about the new doctor I too felt OK with this option and we could continue along on our plan. Once again the drive was not ideal, but thankfully god watched over our travels.
On Thursday Morning Zak went in for his hernia repair and did great. I sat on the edge of my seat, actually laying on the couch from Callie's hospital room waiting for the play by play Chris provided. As Zak's typical self he did think sleeping for two days was a good plan. This lead to a nasty cough and lots of Oxygen. By Sat morning he was back to the Zak we know and love so much.
In the mean time Callie and I just hung out and played all day in her Crib. I think she likes when Mom tries to climb up and snuggle in. She is all smiles. On Thursday Callie got a very special visitor who flew in all the way from the North Pole. Santa always comes to visit Callie and Zak along with all of their Friends at Shared Blessings the first weekend in Dec. He must have been watching over her closely and took a little detour on his way.
Friday was an emotional day. The roller coaster of emotion already started a week prior when this whole event started. I try so hard to stay strong for the kids and Chris. My stomach was a bit uneasy waiting for her BIG surgery on her neck. That was supposed to start at 10. At 9 we got a call that it was going to be delayed a few hours. I thought OK, I can deal with this. Really that is not all that unusual. Finally word came in that the Doctor was out ill. They might have a back up plan. Another surgeon was currently operating on another kido (actually the same surgery) and he may be able to do it at 2:00. Well that Surgeon came to talk with us at 2:00 and felt we should wait for Callie's doctor to operate. A few reasons, it was getting late in the day and the surgery would late into the evening, outside of externalizing Callie's shunt he had never been inside her neck and really if at all possible it is best to have the same surgeon. So we were back to waiting and getting a new plan. For anyone that knows me - not having a plan in place rips me apart. I can deal as long as I have a plan.
As if that was not enough for one day. I was very grateful to get the Ronald McDonald house for the night. About 10:00 my head hit the pillow and I was so thankful for a cozy bed just across the hall from Callie. At 11:00 I was abruptly woke by a man opening my door - he said Sorry and left. I was in a bit of shock trying to figure out how someone else had a key to the room. I was freaking out with everything imaginable going through my head. I went to talk to security who kinda blew me off so I went to find the Nursing supervisor. That was when I finally broke down. I just wanted a good night sleep. Security is not taking me seriously and I don't know if this is a crazy guy that somehow got in (through two locked doors) or was it an honest accident. The nursing supervisory was amazing, what else would I expect everyone is at Gillette! (She talked to security who is actually Regions security team) She put me in a patient room just so I could catch up on sleep away from all the beeps. Granted, not as nice as the other room, but I felt safe and could get a few hours of sleep. By morning it was discovered that it was an honest mistake. A sensor went off in the room of some kind. It was the maintenance man who came to fix it, not realizing I was sleeping in there. It apparently shocked him as much as me. Now I must say I don't give the man a whole lot of credit for smarts though. If you know your job and the facility you would have know by walking in the first door that you were in the Ronald McDonald house. Also again if you know the facility you would have known the purpose of it and that at 11:00 pm people are probably sleeping. Lastly if he just would have said.. oops I am sorry I am maintenance and did not know someone was in here I would not have freaked out all night long. Someday when we are back at home all snuggled in I will look back on this and laugh, but that day is not today :)
This morning our surgeon came to talk with me. The poor doctor still did not look 100% but almost there. Thankfully it was not a flu bug, but food poisoning. What a trooper to still come in on Saturday and round with his patients. The decision was made that we will put in a PICC line for IV access on Monday. This way she can go home on IV antibiotics and hopefully avoid another return stay. On Wednesday our surgeon with do her neck surgery for Chiari Malformation along with moving her shunt from her head to her middle back. Hopefully she will have a quick recovery and we will be on our way home on Friday! I am not excited waiting until Wednesday, however if it what is best for Callie the wait will be worth it. I am just ready to get her home and healthy again.
Pictures:
When Callie was admitted again to the hospital I did not understand why our little girl needed to go through this. I still don't and really don't think I ever will. But what I do know is she is in great hands and if we have to be in a hospital I know this is the place to be. As of now the thought is she had a seizure from an infection. There really is no way to prove this, but it is what makes the most sense. I pray every day that is the case so she does not have a "seizure disorder" to add to her list of diagnosis. She has been quite spunky and awake (most at night and early morning). She tends to sleep away the afternoons.
Our week started on Monday with Zak coming to visit Callie since he had appointments. Chris stayed with Callie and I brought Zak home. The snow started to fall about 1 -2 hours before appointments were over so it did make for a longer drive home. As much as I love a white Christmas I just wish the snow would find a way to stay off the roads :) If only.. right! I was busy getting everything in line at home and getting Zak ready for his surgery on Thursday. Everything was packed up for me to come back to Minnesota on Wednesday so we cold do another kid swap and I got a phone call from Zak's Surgeon. It was the dreaded phone call that the Surgeon could not do his surgery as he was having some of his own Medical Issues. My heart broke in that split second that the doctor told us he had a back up plan and a different doctor was going to take his place and still operate. After I got done with my "interview" of questions about the new doctor I too felt OK with this option and we could continue along on our plan. Once again the drive was not ideal, but thankfully god watched over our travels.
On Thursday Morning Zak went in for his hernia repair and did great. I sat on the edge of my seat, actually laying on the couch from Callie's hospital room waiting for the play by play Chris provided. As Zak's typical self he did think sleeping for two days was a good plan. This lead to a nasty cough and lots of Oxygen. By Sat morning he was back to the Zak we know and love so much.
In the mean time Callie and I just hung out and played all day in her Crib. I think she likes when Mom tries to climb up and snuggle in. She is all smiles. On Thursday Callie got a very special visitor who flew in all the way from the North Pole. Santa always comes to visit Callie and Zak along with all of their Friends at Shared Blessings the first weekend in Dec. He must have been watching over her closely and took a little detour on his way.
Friday was an emotional day. The roller coaster of emotion already started a week prior when this whole event started. I try so hard to stay strong for the kids and Chris. My stomach was a bit uneasy waiting for her BIG surgery on her neck. That was supposed to start at 10. At 9 we got a call that it was going to be delayed a few hours. I thought OK, I can deal with this. Really that is not all that unusual. Finally word came in that the Doctor was out ill. They might have a back up plan. Another surgeon was currently operating on another kido (actually the same surgery) and he may be able to do it at 2:00. Well that Surgeon came to talk with us at 2:00 and felt we should wait for Callie's doctor to operate. A few reasons, it was getting late in the day and the surgery would late into the evening, outside of externalizing Callie's shunt he had never been inside her neck and really if at all possible it is best to have the same surgeon. So we were back to waiting and getting a new plan. For anyone that knows me - not having a plan in place rips me apart. I can deal as long as I have a plan.
As if that was not enough for one day. I was very grateful to get the Ronald McDonald house for the night. About 10:00 my head hit the pillow and I was so thankful for a cozy bed just across the hall from Callie. At 11:00 I was abruptly woke by a man opening my door - he said Sorry and left. I was in a bit of shock trying to figure out how someone else had a key to the room. I was freaking out with everything imaginable going through my head. I went to talk to security who kinda blew me off so I went to find the Nursing supervisor. That was when I finally broke down. I just wanted a good night sleep. Security is not taking me seriously and I don't know if this is a crazy guy that somehow got in (through two locked doors) or was it an honest accident. The nursing supervisory was amazing, what else would I expect everyone is at Gillette! (She talked to security who is actually Regions security team) She put me in a patient room just so I could catch up on sleep away from all the beeps. Granted, not as nice as the other room, but I felt safe and could get a few hours of sleep. By morning it was discovered that it was an honest mistake. A sensor went off in the room of some kind. It was the maintenance man who came to fix it, not realizing I was sleeping in there. It apparently shocked him as much as me. Now I must say I don't give the man a whole lot of credit for smarts though. If you know your job and the facility you would have know by walking in the first door that you were in the Ronald McDonald house. Also again if you know the facility you would have known the purpose of it and that at 11:00 pm people are probably sleeping. Lastly if he just would have said.. oops I am sorry I am maintenance and did not know someone was in here I would not have freaked out all night long. Someday when we are back at home all snuggled in I will look back on this and laugh, but that day is not today :)
This morning our surgeon came to talk with me. The poor doctor still did not look 100% but almost there. Thankfully it was not a flu bug, but food poisoning. What a trooper to still come in on Saturday and round with his patients. The decision was made that we will put in a PICC line for IV access on Monday. This way she can go home on IV antibiotics and hopefully avoid another return stay. On Wednesday our surgeon with do her neck surgery for Chiari Malformation along with moving her shunt from her head to her middle back. Hopefully she will have a quick recovery and we will be on our way home on Friday! I am not excited waiting until Wednesday, however if it what is best for Callie the wait will be worth it. I am just ready to get her home and healthy again.
Pictures:
Big Brother visiting Callie in the Hospital
Going in for a Kiss
A nurse and friend Decorated Callie's room for her
Smiling at her best friend
Special Guest - Thanks Santa for Flying all the way here to see us!
'Bumpa' (Grandpa) making her giggle.
Monday, December 2, 2013
A good day and a lot of information
Today was a good day, but exhausting too.
Zak had clinic at Gillette so it was fun for Callie to have a visitor that she normally does not get to have while in the hospital there. Chris and I played a juggling act between the two kids to make sure we did not miss any doctors. We did have a little extra help as Grandma Kathy came with to visit and help out along with Zak's nurse Jen.
We got some good information on Zak. He does have scoliosis, which we have been watching for a bit but just started to see an orthopedic surgeon. He will have to be watched a bit closer as he as a 29% curvature. At 30% he gets a fancy brace. We go back in 4 month to see where he is at and know that it is just a matter of time. In the long term (several years) he will need to have back surgery to fix it but thankfully we are not there yet. Also he had botox done again in his legs. This helps relax his muscle tone and makes it easier for walking. He did such and great job and was quite the trooper!
We also got lots of answers on Callie. I will do my best to explain this. We don't know if Callie had a seizure or not for sure, but the guess is probably yes. Then then next question is why and we are still sorting through that. A few thoughts - 1) infection. This would actually be the best since it would hopefully just be an isolated incident and she is already being treated. 2) Possibly all the trauma her head has gone through or 3) it is very common for kids with chromosome abnormalities to have a seizure disorder and this just may be the start. Obviously we are hoping it is not number 3. As test results come back on her cultures that may give us some answer. Next we met with Neuro surgeon and he said her next where the spinal cord comes down is tight and in time would need to be fixed. They opened it up last year however she formed some scar tissue and just did not heal as well as he would have liked to see. Also, they need to get her shunt out of her head as it just keeps getting infected. He would like to move it to her spine, however before he does that he wants her neck fixed. So she will be having neck surgery for Chiari malformation on Friday and a new shunt placed next week.
All in all Callie is looking and doing pretty good considering all her trauma her body has gone through. Chris and I are holding up.. just tired. Hoping to be home next week if all goes as planned.
Zak had clinic at Gillette so it was fun for Callie to have a visitor that she normally does not get to have while in the hospital there. Chris and I played a juggling act between the two kids to make sure we did not miss any doctors. We did have a little extra help as Grandma Kathy came with to visit and help out along with Zak's nurse Jen.
We got some good information on Zak. He does have scoliosis, which we have been watching for a bit but just started to see an orthopedic surgeon. He will have to be watched a bit closer as he as a 29% curvature. At 30% he gets a fancy brace. We go back in 4 month to see where he is at and know that it is just a matter of time. In the long term (several years) he will need to have back surgery to fix it but thankfully we are not there yet. Also he had botox done again in his legs. This helps relax his muscle tone and makes it easier for walking. He did such and great job and was quite the trooper!
We also got lots of answers on Callie. I will do my best to explain this. We don't know if Callie had a seizure or not for sure, but the guess is probably yes. Then then next question is why and we are still sorting through that. A few thoughts - 1) infection. This would actually be the best since it would hopefully just be an isolated incident and she is already being treated. 2) Possibly all the trauma her head has gone through or 3) it is very common for kids with chromosome abnormalities to have a seizure disorder and this just may be the start. Obviously we are hoping it is not number 3. As test results come back on her cultures that may give us some answer. Next we met with Neuro surgeon and he said her next where the spinal cord comes down is tight and in time would need to be fixed. They opened it up last year however she formed some scar tissue and just did not heal as well as he would have liked to see. Also, they need to get her shunt out of her head as it just keeps getting infected. He would like to move it to her spine, however before he does that he wants her neck fixed. So she will be having neck surgery for Chiari malformation on Friday and a new shunt placed next week.
All in all Callie is looking and doing pretty good considering all her trauma her body has gone through. Chris and I are holding up.. just tired. Hoping to be home next week if all goes as planned.
Sunday, December 1, 2013
Surgeries?
Once again the last month has been crazy. That seems to be our story lately.
Callie came home from the hospital and was back to herself in about a week. It was so happy to see our little girl back playing and exploring all about the house. On Nov 7th we noticed that her incision was a little red and the Neuro team had us add an ointment. The next day she had eye surgery to repair her eye. She has a history of ptosis (lazy eye lid) and the past surgery "broke" on her right eye from all the swelling she had from her April surgery. This was a planned surgery that was very successful. Two days later she was back to exploring and this time seeing much better. However her incision on her head was looking a little icky and we found out she had a yeast infection in it. We changed the medication and thought we were in the clear.
In the mean time Zak had a few appointments and we found out he has two hernias and will be having surgery December 5th. We met the doctor for the first time and it was adorable what Zak did! The doctor walked in the room and was talking to Zak. (This is so impressive of a doctor because they address the kids first.) Zak looked at him smiling, grabbed his white coat, pulled him in and gave him a huge hug! When the doctor thanked him Zak smiled and clapped. It was lit Zak knew this was the doctor to fix what was going on. What a proud parent moment.
Next was onto the allergy/immunologist appointment with Zak. We have been watching him for immune issues for some time now and time is the only way to figure things out. Zak was just diagnosed with hypogammaglobulinemia. The only easy way to describe this is immune deficient. We will continue to watch his blood work and what the winter brings. Upon any illnesses we will work with our doctor to determine if/when treat will be started.
I was thinking we finally have a good plan, the holidays are upon us and now I can relax and just enjoy family was my plan for the remainder of the year. Well it was a Great though right? Chris left to go hunting and the kids and I had a relaxing weekend. Both health and happy. I just smiled all day and snuggled with them. We watched movies, played toys, read storied and of course Callie's enjoyed eating. One of her favorite past times :) Unfortunately Chris did not bring a deer home as a buck never came close enough, but at least everyone was back home safe. We enjoyed our Thanksgiving with Family and Friends. It was a nice relaxing day. Chris and I even got out to do some black Friday shopping among clinic check ups for the kids. Callie looked great. Our doctor was happy how well she looked. However that afternoon is when things changed.
We got home Friday afternoon to what seemed a normal day in the Teeters' house. The nurses were watching the kids, they Kids playing, getting their g-tube feeds, meds complete and Callie following us around on all fours as we unpacked and picked up. One of the nurses was sitting on the floor next to Callie as she was playing and mellowing down for a nap. She feel asleep on the floor and a few minutes later started to foam from her mouth. The nurse asked me if I have ever seen this before and I ran to Callie as this was nothing she has ever done. She was starting to turn blue and was non-responsive to us. We grabbed Chris and the other nurse and hooked Callie up to all her monitors and oxygen. A call to 911 was placed and to grandma to come watch Zak. What seemed like hours was 15 minutes before the ambulance arrived. Callie was struggling to get her oxygen levels up. She was starting to move her right side of her body, but nothing from her left. We got Callie to the local hospital close to our house and there she was intubated to stabilize her. The only thought at this point was Callie just had her first Seizure. She needed to be transported to the PICU in Marshfield. She was flown there and given lots of anti-seizure medication. It was so hard to think she was doing so good and so quick her life once again changed. The ICU doctor met with us and laid out a plan. She was hooked up to more monitor for seizures. Had a CT and everything looked normal. Friday night she spiked a fever of 102.9 which took about 15 hours to get it to start coming down. Saturday morning they took out her breathing tube as she was breathing on her own. We consulted Neuro and the ICU doctor and came up with a new plan for Callie. As a team we decided Callie needed to be moved to Gillette in MN where all of her Neuro has been done in the last year. 3rd Hospital in 2 days. I never thought I would say that. All I could think was up to this point how lucky our daughter had been. The first responders and EMT on site were so calm and got Callie to the right place. All the staff at Aspirus took great care of her to get her ready to move. The ICU staff in Marshfield really listened to us and discussed everything with us 110%. The transport staff so caring and passionate about what they do. As we waited to transport I reflected on all the people that helped stabilize Callie and made such critical decisions. I also reflected how God really works in mysterious ways. Any other Friday Chris and I would have been at work and Zak would have been at school. Instead all 4 adults were at home to help Callie.
Saturday afternoon Callie was all packed up and ready to be flighted to MN when the team got a call from the pilot and they were having maintenance issues. Callie would wait a few more hours and be transported by ground. I was able to ride in the back with her and this was the first time we could start to see her personality coming back. We were reassured by this time she had full movement and a few smiles and cries to let us know what she though. We made it to MN at 9pm to start the next part of our journey. They all know Callie and our family so well here. This has become a second home to us. I wish I never would have to say that, however we know we are in great hands and we have a place that knows us. By 11:30 we had a plan in place to figure out what is going on with Callie.
This morning she has an MRI to get some more answers. They are also opening up her incision site as it is not healing correctly. Depending on what all is found will help us develop a plan.
Now we wait and pray!
For Regular updated Find us on Facebook. Annie Renelt Teeters or Chris Teeters. We will update this as time allows with more in-depth details. As always thank you for everyone's support and prayers and we go through another challenge.
Callie came home from the hospital and was back to herself in about a week. It was so happy to see our little girl back playing and exploring all about the house. On Nov 7th we noticed that her incision was a little red and the Neuro team had us add an ointment. The next day she had eye surgery to repair her eye. She has a history of ptosis (lazy eye lid) and the past surgery "broke" on her right eye from all the swelling she had from her April surgery. This was a planned surgery that was very successful. Two days later she was back to exploring and this time seeing much better. However her incision on her head was looking a little icky and we found out she had a yeast infection in it. We changed the medication and thought we were in the clear.
In the mean time Zak had a few appointments and we found out he has two hernias and will be having surgery December 5th. We met the doctor for the first time and it was adorable what Zak did! The doctor walked in the room and was talking to Zak. (This is so impressive of a doctor because they address the kids first.) Zak looked at him smiling, grabbed his white coat, pulled him in and gave him a huge hug! When the doctor thanked him Zak smiled and clapped. It was lit Zak knew this was the doctor to fix what was going on. What a proud parent moment.
Next was onto the allergy/immunologist appointment with Zak. We have been watching him for immune issues for some time now and time is the only way to figure things out. Zak was just diagnosed with hypogammaglobulinemia. The only easy way to describe this is immune deficient. We will continue to watch his blood work and what the winter brings. Upon any illnesses we will work with our doctor to determine if/when treat will be started.
I was thinking we finally have a good plan, the holidays are upon us and now I can relax and just enjoy family was my plan for the remainder of the year. Well it was a Great though right? Chris left to go hunting and the kids and I had a relaxing weekend. Both health and happy. I just smiled all day and snuggled with them. We watched movies, played toys, read storied and of course Callie's enjoyed eating. One of her favorite past times :) Unfortunately Chris did not bring a deer home as a buck never came close enough, but at least everyone was back home safe. We enjoyed our Thanksgiving with Family and Friends. It was a nice relaxing day. Chris and I even got out to do some black Friday shopping among clinic check ups for the kids. Callie looked great. Our doctor was happy how well she looked. However that afternoon is when things changed.
We got home Friday afternoon to what seemed a normal day in the Teeters' house. The nurses were watching the kids, they Kids playing, getting their g-tube feeds, meds complete and Callie following us around on all fours as we unpacked and picked up. One of the nurses was sitting on the floor next to Callie as she was playing and mellowing down for a nap. She feel asleep on the floor and a few minutes later started to foam from her mouth. The nurse asked me if I have ever seen this before and I ran to Callie as this was nothing she has ever done. She was starting to turn blue and was non-responsive to us. We grabbed Chris and the other nurse and hooked Callie up to all her monitors and oxygen. A call to 911 was placed and to grandma to come watch Zak. What seemed like hours was 15 minutes before the ambulance arrived. Callie was struggling to get her oxygen levels up. She was starting to move her right side of her body, but nothing from her left. We got Callie to the local hospital close to our house and there she was intubated to stabilize her. The only thought at this point was Callie just had her first Seizure. She needed to be transported to the PICU in Marshfield. She was flown there and given lots of anti-seizure medication. It was so hard to think she was doing so good and so quick her life once again changed. The ICU doctor met with us and laid out a plan. She was hooked up to more monitor for seizures. Had a CT and everything looked normal. Friday night she spiked a fever of 102.9 which took about 15 hours to get it to start coming down. Saturday morning they took out her breathing tube as she was breathing on her own. We consulted Neuro and the ICU doctor and came up with a new plan for Callie. As a team we decided Callie needed to be moved to Gillette in MN where all of her Neuro has been done in the last year. 3rd Hospital in 2 days. I never thought I would say that. All I could think was up to this point how lucky our daughter had been. The first responders and EMT on site were so calm and got Callie to the right place. All the staff at Aspirus took great care of her to get her ready to move. The ICU staff in Marshfield really listened to us and discussed everything with us 110%. The transport staff so caring and passionate about what they do. As we waited to transport I reflected on all the people that helped stabilize Callie and made such critical decisions. I also reflected how God really works in mysterious ways. Any other Friday Chris and I would have been at work and Zak would have been at school. Instead all 4 adults were at home to help Callie.
Saturday afternoon Callie was all packed up and ready to be flighted to MN when the team got a call from the pilot and they were having maintenance issues. Callie would wait a few more hours and be transported by ground. I was able to ride in the back with her and this was the first time we could start to see her personality coming back. We were reassured by this time she had full movement and a few smiles and cries to let us know what she though. We made it to MN at 9pm to start the next part of our journey. They all know Callie and our family so well here. This has become a second home to us. I wish I never would have to say that, however we know we are in great hands and we have a place that knows us. By 11:30 we had a plan in place to figure out what is going on with Callie.
This morning she has an MRI to get some more answers. They are also opening up her incision site as it is not healing correctly. Depending on what all is found will help us develop a plan.
Now we wait and pray!
For Regular updated Find us on Facebook. Annie Renelt Teeters or Chris Teeters. We will update this as time allows with more in-depth details. As always thank you for everyone's support and prayers and we go through another challenge.
Thankful
There is so much to be Thankful at this time of Year. Thanksgiving makes me reflect on the last year as we look back at everything that our life has brought us. It has been crazy and so many unexpected things with the kids, however without our support around us of Family, Friends and the amazing medical specialist in our life I really don't know how we could do it.
It has been an emotional and stressful roller coaster this past two months. Some days I just don't even know how to feel, others I am so sad and the next I am laughing. We truly take each day one day at a time with the kids and I have learned that even more since Mid October.
I am so grateful for the community we live in - there are so many prayers for our children from people that have never even met us. For this I am thankful to have God in our lives. He has gave us two very special children that have changed the lives of so many!
It has been an emotional and stressful roller coaster this past two months. Some days I just don't even know how to feel, others I am so sad and the next I am laughing. We truly take each day one day at a time with the kids and I have learned that even more since Mid October.
I am so grateful for the community we live in - there are so many prayers for our children from people that have never even met us. For this I am thankful to have God in our lives. He has gave us two very special children that have changed the lives of so many!
Thursday, October 31, 2013
A Longer stay
Day 18 -
We are still at the hospital - it has been a long draining stay. So far Callie is infection free, however her inflammation levels have been elevated and unsure why. On Monday they switched out Callie's temporary drain for another temp. Thankfully with that change her inflammation levels decreased and today they are putting back in a permanent shunt.
This marks our second year in the hospital celebrating with Gillette! They sure know how to do Halloween here so I decided we need to make this a tradition - next year we will have to plan a clinic visit just so we aren't stuck in the hospital!
Over all Callie has really been doing great. She is in very good spirits and has great staff around her. We have been very grateful for the many visitors, support and prayers! With any luck we will be home tomorrow with our family again!
We are still at the hospital - it has been a long draining stay. So far Callie is infection free, however her inflammation levels have been elevated and unsure why. On Monday they switched out Callie's temporary drain for another temp. Thankfully with that change her inflammation levels decreased and today they are putting back in a permanent shunt.
This marks our second year in the hospital celebrating with Gillette! They sure know how to do Halloween here so I decided we need to make this a tradition - next year we will have to plan a clinic visit just so we aren't stuck in the hospital!
Over all Callie has really been doing great. She is in very good spirits and has great staff around her. We have been very grateful for the many visitors, support and prayers! With any luck we will be home tomorrow with our family again!
Sunday, October 20, 2013
A long Stay
Day 7 and still in the hospital!
This was an unexpected trip this time around. Callie has had a fluid pocket on the side of her head for a bit now. The doctors were not concerned as long as Callie was not symptomatic and up to this point she was not. Last Sunday however we noticed some drainage from it and called the Doctors whom asked us to come in on Monday.
Upon arrival we saw the Doctors who ended up admitting her and did Surgery that day to remove her shunt and test for infection. During the surgery they put in a temporary external shunt as well. Thankfully to date no infection has surfaced, however we are not sure if she needs a shunt or not. The doctors continue to monitor her daily and are trying to figure things out. They need to wait at least 10 days before they feel she is infection free. Currently they are adjusting the settings on the shunt to determine if it is even needed. Unfortunately that means probably another week in the hospital. Tomorrow when the surgeons are in we should get a little bit better plan, but for now we just wait.
This has been our longest stay in hospital since Callie was born. I think that is the hardest thing. Typically we have a planned stay and know roughly how long she will be in for. This time was a bit different. We are grateful for the wonderful staff and doctors while we are here along with all of our wonderful visitors even though we are so far away from home - Chris's Parents, Dan and Kathy and cousin Angie have made the way from home along with one of the kids nurses Kue. My Mom and brother are close so they have come too along with my best friend Heidi and her kids and my college coach Jean and her daughter. It is so nice to have the company to help pass the day.
Thank you to everyone for all of you support and prayers!
This was an unexpected trip this time around. Callie has had a fluid pocket on the side of her head for a bit now. The doctors were not concerned as long as Callie was not symptomatic and up to this point she was not. Last Sunday however we noticed some drainage from it and called the Doctors whom asked us to come in on Monday.
Upon arrival we saw the Doctors who ended up admitting her and did Surgery that day to remove her shunt and test for infection. During the surgery they put in a temporary external shunt as well. Thankfully to date no infection has surfaced, however we are not sure if she needs a shunt or not. The doctors continue to monitor her daily and are trying to figure things out. They need to wait at least 10 days before they feel she is infection free. Currently they are adjusting the settings on the shunt to determine if it is even needed. Unfortunately that means probably another week in the hospital. Tomorrow when the surgeons are in we should get a little bit better plan, but for now we just wait.
This has been our longest stay in hospital since Callie was born. I think that is the hardest thing. Typically we have a planned stay and know roughly how long she will be in for. This time was a bit different. We are grateful for the wonderful staff and doctors while we are here along with all of our wonderful visitors even though we are so far away from home - Chris's Parents, Dan and Kathy and cousin Angie have made the way from home along with one of the kids nurses Kue. My Mom and brother are close so they have come too along with my best friend Heidi and her kids and my college coach Jean and her daughter. It is so nice to have the company to help pass the day.
Thank you to everyone for all of you support and prayers!
Friday, September 27, 2013
Zak's a Star!
Zak's class video!! What a great job!
http://www.youtube.com/watch?v=qZNE3AUXBEI
Update on Callie: She has a fluid bump on her head, however she is not symptomatic so we just wait. If she becomes symptomatic then she will need surgery. We just don't know at this point if she really needs her shunt which is why we are waiting. She has been doing great so time will tell!
http://www.youtube.com/watch?v=qZNE3AUXBEI
Update on Callie: She has a fluid bump on her head, however she is not symptomatic so we just wait. If she becomes symptomatic then she will need surgery. We just don't know at this point if she really needs her shunt which is why we are waiting. She has been doing great so time will tell!
Wednesday, September 18, 2013
Time for a break!
I wish I could just call a time out!! This past year has been ridiculous. People always say God does not give you more than you can handle, but I can defiantly say he is testing me now! I am not sure how much I agree with that saying, but I do not know does give special kids to special families!
It has been so long since I wrote and I have been terrible at it. I am not even sure where to start.
So Zak's surgery went well but about 3 weeks after surgery he started to bang his head again and this time worse. We went through all the test and everything looked good with his shunt. No clue so we put him on some neurological pain meds and are going to be seeing another doctor in November. Then randomly when we change his diaper his testicle doubled in size! That was a bit of a scare. We went in to find out he has a hydrocele (an accumulation of clear fluid in the most internal of membranes. We are told it is painless). It is possible that since his shunt is draining the fluid into his belly that is where it is going. If this continues for 4-6 months he will need to have surgery to fix it.
As for Callie, well things seemed to be going well until we felt a lump on the side of her head. We thought it was her shunt and took her to the ER. They told us it was fine. When we followed up 2 days latter our wonderful amazing Pediatrician told us she too thinks it is Fluid from her shunt. I truly wish I could clone her and carry her around with us. It would save us so much time and energy! We go to our favorite clinic on Friday - Gillette! I also wish I could clone some of those doctors or just move the clinic closer to us! Along with that issue she has had loose stool for 3 weeks and all of the tests have come back negative. We are still pending one more and if this is negative we will probably have to start testing for GI issues and food allergies. Just another thing to add to our list of many.
Needless to say - Please say some prayers for some healthy kids and lots of answers! It has just been a strange year.
We do have some good news - Both kids are in school and loving it. Zak now rides the bus with his nurse. He seems to be doing fine on it. He is in the same classroom as last year with the same great staff! I think he really enjoys the routine and seeing his friends. We are told he is now in 3rd grade, however I am in denial because I still think he is in 2nd. When he is in the same class from kindergarten to 5th it becomes hard to separate the years. I keep asking parents that have 8 year olds what grade their kids are in and it never changes. How do they grow up so quickly?
Callie is actually going to school this year too. By the sounds of it she is adapting, but the hardest part will be to keep her sitting still as we all know how much she likes to move.
As for me - many of you may not know. I took a new position with the company that I work for in May. I truly thought it was time for a change and I was very excited about the new opportunity. I did like what I was doing, but it was time for something new. It has been a big adjustment and a challenge. Mainly just the learning. I went from something I knew very well to learning a whole new job. I am now implementing archive software for our company. I absolutely love what I do now and could not ask for a better department. I am getting used to the adjustment and brain drain that I come home with. They are all very understanding of our family as well so that has been helpful. I feel very blessed to have a new journey.
I don't think this nearly covers it all, however I really do need to start going to bed at a decent time so I am going to need to call it a day. I will try my hardest to update this over the weekend when we know what is going on with Callie. If you are ever looking for an update and I don't post one feel free to send us an e-mail too cateeters@charter.net
It has been so long since I wrote and I have been terrible at it. I am not even sure where to start.
So Zak's surgery went well but about 3 weeks after surgery he started to bang his head again and this time worse. We went through all the test and everything looked good with his shunt. No clue so we put him on some neurological pain meds and are going to be seeing another doctor in November. Then randomly when we change his diaper his testicle doubled in size! That was a bit of a scare. We went in to find out he has a hydrocele (an accumulation of clear fluid in the most internal of membranes. We are told it is painless). It is possible that since his shunt is draining the fluid into his belly that is where it is going. If this continues for 4-6 months he will need to have surgery to fix it.
As for Callie, well things seemed to be going well until we felt a lump on the side of her head. We thought it was her shunt and took her to the ER. They told us it was fine. When we followed up 2 days latter our wonderful amazing Pediatrician told us she too thinks it is Fluid from her shunt. I truly wish I could clone her and carry her around with us. It would save us so much time and energy! We go to our favorite clinic on Friday - Gillette! I also wish I could clone some of those doctors or just move the clinic closer to us! Along with that issue she has had loose stool for 3 weeks and all of the tests have come back negative. We are still pending one more and if this is negative we will probably have to start testing for GI issues and food allergies. Just another thing to add to our list of many.
Needless to say - Please say some prayers for some healthy kids and lots of answers! It has just been a strange year.
We do have some good news - Both kids are in school and loving it. Zak now rides the bus with his nurse. He seems to be doing fine on it. He is in the same classroom as last year with the same great staff! I think he really enjoys the routine and seeing his friends. We are told he is now in 3rd grade, however I am in denial because I still think he is in 2nd. When he is in the same class from kindergarten to 5th it becomes hard to separate the years. I keep asking parents that have 8 year olds what grade their kids are in and it never changes. How do they grow up so quickly?
Callie is actually going to school this year too. By the sounds of it she is adapting, but the hardest part will be to keep her sitting still as we all know how much she likes to move.
As for me - many of you may not know. I took a new position with the company that I work for in May. I truly thought it was time for a change and I was very excited about the new opportunity. I did like what I was doing, but it was time for something new. It has been a big adjustment and a challenge. Mainly just the learning. I went from something I knew very well to learning a whole new job. I am now implementing archive software for our company. I absolutely love what I do now and could not ask for a better department. I am getting used to the adjustment and brain drain that I come home with. They are all very understanding of our family as well so that has been helpful. I feel very blessed to have a new journey.
I don't think this nearly covers it all, however I really do need to start going to bed at a decent time so I am going to need to call it a day. I will try my hardest to update this over the weekend when we know what is going on with Callie. If you are ever looking for an update and I don't post one feel free to send us an e-mail too cateeters@charter.net
Tuesday, July 30, 2013
11 REASONS WHY WE ROCK!
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!
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!
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.
Heart Surgey
Callie is having heart surgery today. This is the one surgery I prayed that neither of the kids would ever have. There is just something that scares me about surgery on the heart. Thankfully all of the doctors have assured me this is a "common" heart surgery. It just kills me to know my baby will have yet another scar. She has a wonderful team taking good care of her. We pray for a speedy recovery and lots of strength for the nurses and doctors taking care of her. We will be at the hospital for 3-6 days assuming all goes as planned. I will facebook and blog as we have updates. Please continue to pray for our family and the team taking care of Callie.
Zak is at home with the nurses. He is back to school today. He will be missing his sister these few days she is gone, but he may also enjoy some quiet time with out be climbed on :)
Zak is at home with the nurses. He is back to school today. He will be missing his sister these few days she is gone, but he may also enjoy some quiet time with out be climbed on :)
Friday, January 4, 2013
A Reflection of 2012
As I sit here and reflect on 2012 I cannot help but be so grateful how far the kids have come despite all the bumps in the road medically. We have an amazing support around us of Family, Friends, Nurses, Doctors, Therapists, Teachers and the list goes on. We could not have gotten through 2012 without each and every person.
In February Callie underwent tonsil and adenoid removal. We also asked for one of her ear tubes to come out as she was having issues along with a nasal scope. We just felt she was not breathing through her nose correctly. The surgery went well, however it did result in a septic blood infection which meant we had to give her IV antibiotics. This was our first treatment of IV meds at home. We also learned her nose was not open and were referred to other doctors. Getting to the correct doctor became a challenge and it was not until July when we connected with the correct person. After that appointment it was September when we got in for a second opinion. Although we still had not got anywhere on her nose all the tests that were ran resulted in a new finding. Her brain was growing, however her skull was not. It was 1 complete fused bone. She would need to have surgery on her skull to make it bigger before doing anything else. In October she underwent her first skull surgery along with neck surgery to remove a small bone. The surgery once again went well, however ended up in a terrible infection at the incision site of her neck. We were right back to IV antibiotics at home. This time it was not so simple. The line broke twice and we finally took it out and put her on oral antibiotics. This resulted in an allergic reaction to a medication she had been on many times in the past. Since the surgery she has been amazing. She is so happy, loves to crawl all over and look for her brother. When he is at school she crawls to his bedroom at the end of the hall to look for him, only to find he is not there. It is so much fun just to watch her move and smile. I truly cannot get enough of it. When I lay on the floor she loves to lay on my head and give me kisses, which is more like a big slobber, but it is so cute when it is your own child. I am just so amazed each and every day when that surgery has done for her.
As for the rest of Callie’s year she also ended up having her eye surgery in May, which also resulted in and infection. Thankfully this one we were able to take care with oral antibiotics. It seemed very major at the time, but looking back at her year it really was minor. In and among all the medical and trips to the clinic she still sees all her therapists. They still come to the home instead of sending her to school. Hopefully this fall she will go to the class room. She has an amazing team of therapists and teachers that work with her. One of her goals at the beginning of the school year was just to sit through one book. She is now doing 3 very well! Callie still loves to hear herself talk and look at her Best Friend in the Mirror. She goes everywhere with Callie.
As for Zak, he too has had a bit of a rough year. Thankfully it only started rough and the end was good. In March he got pneumonia and after doctoring and 3 trips to the ER he ended up in the hospital intubated (tube down his throat breathing for him). He had actually went to the clinic on a Monday afternoon and was doing great. Around 4:30-5:00 he started to cough and took a huge turn for the worst. We still really have no idea what happened to him. There are many theories, but no solid answers. He spent 4 days intubated and on day 5 we went home. I can honestly say I have never been so scared for my child’s life. I was a wreck! Thankfully he recovered well. It took him a few weeks to get all of his energy back. He did end up with a case of Bells Palsey from the infection. Slowly this went away too. By May he was doing well and at school he took a bit of a spill. Over the curb in his wheelchair and onto his face he landed, resulting in a broken nose. Once Zak got over the pain and shock he was back to himself. (Literally a few hours later.) He still has the scars to prove his battle. Zak has been such a happy BIG boy this year. He still loves his toys and all his friends at school. We are always hearing cute little stories about how he is hugging his friends at recess or trying to look up the little girls skirts. Everyone also tells us how wonderful he is to be around. He is truly a little blessing and so well mannered…most of the time. It has been 1 year now since he has had his new adaptive bike. We brought it to school for him so he could use it during gym. He has been doing amazing moving it and slowing learning to turn the wheel.
In between the visits we spent much of the summer in the pool in our back yard. The kids just loved it. Zak was swimming on his own with just an air tube around his chest. Callie loved to splash, but she was a bit more fussy on the temp of the water. Family and Friends were over most weekends swimming during the day and having a camp fire cook out at night. The new house has been amazing for the kids and allowed us to do so much more with them while having fun!
Big news for Shared Blessings in 2012. We officially became a Non-profit! We hosted an open house and two play groups at the end of the year. Santa was even able to join us for the last play group where the kids and families were able to get professional pictures taken! If you are interested in helping or donating to Shared Blessings in 2013 check out our website at http://sharedblessingskids.org/ or e-mail to admin@sharedblessingskids.org
In February Callie underwent tonsil and adenoid removal. We also asked for one of her ear tubes to come out as she was having issues along with a nasal scope. We just felt she was not breathing through her nose correctly. The surgery went well, however it did result in a septic blood infection which meant we had to give her IV antibiotics. This was our first treatment of IV meds at home. We also learned her nose was not open and were referred to other doctors. Getting to the correct doctor became a challenge and it was not until July when we connected with the correct person. After that appointment it was September when we got in for a second opinion. Although we still had not got anywhere on her nose all the tests that were ran resulted in a new finding. Her brain was growing, however her skull was not. It was 1 complete fused bone. She would need to have surgery on her skull to make it bigger before doing anything else. In October she underwent her first skull surgery along with neck surgery to remove a small bone. The surgery once again went well, however ended up in a terrible infection at the incision site of her neck. We were right back to IV antibiotics at home. This time it was not so simple. The line broke twice and we finally took it out and put her on oral antibiotics. This resulted in an allergic reaction to a medication she had been on many times in the past. Since the surgery she has been amazing. She is so happy, loves to crawl all over and look for her brother. When he is at school she crawls to his bedroom at the end of the hall to look for him, only to find he is not there. It is so much fun just to watch her move and smile. I truly cannot get enough of it. When I lay on the floor she loves to lay on my head and give me kisses, which is more like a big slobber, but it is so cute when it is your own child. I am just so amazed each and every day when that surgery has done for her.
As for the rest of Callie’s year she also ended up having her eye surgery in May, which also resulted in and infection. Thankfully this one we were able to take care with oral antibiotics. It seemed very major at the time, but looking back at her year it really was minor. In and among all the medical and trips to the clinic she still sees all her therapists. They still come to the home instead of sending her to school. Hopefully this fall she will go to the class room. She has an amazing team of therapists and teachers that work with her. One of her goals at the beginning of the school year was just to sit through one book. She is now doing 3 very well! Callie still loves to hear herself talk and look at her Best Friend in the Mirror. She goes everywhere with Callie.
As for Zak, he too has had a bit of a rough year. Thankfully it only started rough and the end was good. In March he got pneumonia and after doctoring and 3 trips to the ER he ended up in the hospital intubated (tube down his throat breathing for him). He had actually went to the clinic on a Monday afternoon and was doing great. Around 4:30-5:00 he started to cough and took a huge turn for the worst. We still really have no idea what happened to him. There are many theories, but no solid answers. He spent 4 days intubated and on day 5 we went home. I can honestly say I have never been so scared for my child’s life. I was a wreck! Thankfully he recovered well. It took him a few weeks to get all of his energy back. He did end up with a case of Bells Palsey from the infection. Slowly this went away too. By May he was doing well and at school he took a bit of a spill. Over the curb in his wheelchair and onto his face he landed, resulting in a broken nose. Once Zak got over the pain and shock he was back to himself. (Literally a few hours later.) He still has the scars to prove his battle. Zak has been such a happy BIG boy this year. He still loves his toys and all his friends at school. We are always hearing cute little stories about how he is hugging his friends at recess or trying to look up the little girls skirts. Everyone also tells us how wonderful he is to be around. He is truly a little blessing and so well mannered…most of the time. It has been 1 year now since he has had his new adaptive bike. We brought it to school for him so he could use it during gym. He has been doing amazing moving it and slowing learning to turn the wheel.
In between the visits we spent much of the summer in the pool in our back yard. The kids just loved it. Zak was swimming on his own with just an air tube around his chest. Callie loved to splash, but she was a bit more fussy on the temp of the water. Family and Friends were over most weekends swimming during the day and having a camp fire cook out at night. The new house has been amazing for the kids and allowed us to do so much more with them while having fun!
Big news for Shared Blessings in 2012. We officially became a Non-profit! We hosted an open house and two play groups at the end of the year. Santa was even able to join us for the last play group where the kids and families were able to get professional pictures taken! If you are interested in helping or donating to Shared Blessings in 2013 check out our website at http://sharedblessingskids.org/ or e-mail to admin@sharedblessingskids.org
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