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!

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!

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

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!

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).

 We have been keeping busy with the kids and all of their appointments. Callie got the all clear for a year with all of her skull issues, which was great news. Zak, however will be getting a shunt in him head tomorrow. The last test he had revealed that he does have some extra pressure in his skull. We are not sure if this will help his head banging and discomfort, but we pray it will.

 Zak finished up another year of school and has started summer school for 6 week. We are not real impressed as usual with the summer program however Zak gets to swim for an hour and he loves the water! I think he could swim all day if we let him. With his surgery he will have to take some time off from swimming for a bit. Our plan for Callie is to attend school in the fall. I think she will do great with all the kids. She loves other babies and children.

 I recently learned to sew clothes for the kids. Grandma Kathy has taught me some of the ropes and together we made 3 outfits for each child. Doing snaps was a learning experience on Callie’s. It just makes things so much easier in the hospital to have snap up clothes.

 We are also planning our first family vacation in July. (if you call it that). The kids have a day and a half of apts at Gillette and then we will stay another day to check out Como Zoo and some other attractions. Hoping the kids do well in a hotel and all the running around.

 Needless to say there are is always frustration that goes along with all the good so I am going to leave you with one thought. Thankfully it is not our friends and family that say this to us - Mostly it is the clinics and insurance companies that we struggle with - Just think before you tell someone you understand. I know it is our American culture to say “I understand” when someone is talking and addressing concerns and issues, but my question is “do you really understand?” Have you walked in that persons shoes or gone through something similar? If yes, then go ahead and say it, but if you are just sympathizing then say something like that must be frustrating, not I understand.. because you don’t. Like I said there is frustration that goes along with all that we do and I seem to be very good at sugar coating it so I just had to put that out there as my vent for the day.

 I will be better over the next few days with update on Zak as he goes through surgery. I will also put updates on my Facebook ‘Annie Renelt Teeters’ If you are not already my friend on their but want to follow just send me a message!

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.”

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