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

A link to Grandpa's obituary:

http://www.pricecountydaily.com/obituaries/article_c532413a-b985-11e2-a106-0019bb2963f4.html

 

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'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!

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.

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 :)

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

All healed

Callie is doing great since her surgery and all the trips back and forth to Minnesota. Her follow up went great. All of the doctors were very happy with her progression. The neurosurgeon made the comment previously how serious her skull was, which made us very grateful to have found Gillette. Hearing this is something he would see in a medical journal it was so serious was a bit shocking, but really assures us this was defiantly the right thing to do. Since surgery and recovering from her infection she has become so much happier. She was always a very happy little girl, but it is so different now. She also has so much energy and is always giggling and moving. She stands so much better, is always crawling and wrestling with anyone on the floor (and she likes her brothers head the best).

With our follow up the infectious disease doctor (ID) decided to keep her on her IV medications one more week as she would be having heart surgery in January. We had a great plan in place until we got home from the 3 hour drive and her PICC line broke for the second time in 2 weeks. We were not even home more than 5 minutes. I truly just wanted to sit and cry. All I could think was there was no way I was driving back to Gillette and no one locally will replace it at night. After talking with Gillette I told them I was not going to drive back and she was just going to go without her medication for the night. They agreed this was ok and we could just talk with the doctor in the morning. They decided there was actually a greater risk of infection to replace the PICC again when she really did seem better so they had the local pediatrician pull her PICC line that day and we started on an oral antibiotic for another 10 days. I think Callie was so happy to have everyone stop messing with her and just get to her whole arm back.
It was confirmed this week that Callie will be having open heart surgery on January 7th. They will be fixing her ASD (whole in the heart from birth) along with her pulmonary stenosis (narrowed pulmonary valve – where the blood is pumped out to the lungs). She will spend 1 week in the PICU. This has been something we have been monitoring since birth. She has been stable since she was 1 year old, however she has a significant blockage that we knew it was only a matter of time before she would need this surgery. We have been waiting for her to get bigger and healthier. It has been quote the balancing act for the doctors to determine when the right time is. With the potential surgeries and sedations coming up in the next year it is time to get her heart fixed. We need to wait 2 months before moving on with any additional surgeries as she will be put on blood thinners through the heart surgery.
We do not have a set date yet, however we are thinking beginning of April she will have her second cranial surgery done. This one will be for her forehead. The purpose will be to allow for her brain to continue growing and make additional space. There is a possibility that from the movement of the bone and swelling there her surgery had on her eyes to lift the lids will “break” and need to be re-done. Only time will tell. The third cranial surgery would potentially be the mid-face. At this point it has been put on hold and the doctor will just follow her a year after the forehead surgery to determine if it will be necessary. Originally we thought all 3 would be required so that was great news to hear that maybe it won’t be needed.
We are still in the process of trying to find an ENT doctor that is familiar with the choanal atresia (Closed nasal passage) to start talking through that. We know it is still a year out so we have not spent to much energy trying to find someone. There is a lot going on and we remind ourselves one day at a time. Callie is showing huge progression and we are so proud of her!

Zak also saw the doctors at Gillette while we were there. We are excited that he does not have the Craniosynostosis (fused skull) like Callie! The cranial doctor would like to follow him annually though as his mid face is slightly pushed back and wants to be sure that it does not become an issue. He also saw an orthodontist while we were there and confirmed he will need some oral work done at some point as he does have a very small mouth. We will be seeing a dentist at Gillette and then will continue to follow an orthodontist. We also talked to the doctors about Zak’s continuing head banging. There are a few tests that they can run to rule things out before it is deemed as behavioral. We are still working through that to determine where to start and how we would like to move forward.