Words

It has been a long time since I have wrote anything. Sorry for those that follow us on the Blog. I took a break and was just updating Facebook. Today I sit down thinking of the blog and how it tells the story of our ups and downs in our life. I really don't have many words today to share and I am out of words today and full of emotion.

The past year (and a few months) since I wrote has been full of so many memories.

• Surgeries and hospitalizations (because that seems to always be part of our story)
• An Amazing trip to Disney World for Callie's Make a Wish WI trip. I will blog about that soon because I know so many people are waiting to hear all about it
• Happy times with our family - and an pig roast with Family and Friends
• The birth of our first blood niece (because we have another)
• Proud God Parents to little miss Hannah
• Shared Blessing, Inc. Touching more families! I could never have done this alone - what an amazing co-founder, board and volunteers to make this such a priority that touches so many lives.
• A trip to Mexico with my mom (First one is 7 years)
• My Jaw surgery
• My best friend supporting me every day - followed by a kiss good night.
• The nurses, Friends and family in our life that share in our life daily with us.

I know I am forgetting so many more as I sit year and think how blessed we are with support of so many around us and all the things that happen in a year.

This past Feb we had a shocking appointment that has forever changed me as a Mom. Callie turned 6 just a few weeks earlier, Zak on his way to 10. Such a proud mom I am how far they have come, especially the past year. They are so happy and have such amazing educators all around them. Both walking fairly well with some assistance makes me so proud. That was all I could think about. We spent the night in the hospital for a sleep study with Callie - I was not expecting any new information. We knew she has severe sleep apnea. So that was expected to hear. Still just hard to hear that we are doing so much with her nose and not gaining much ground. Then she had a sedated MRI since we have not looked at hear head real close in a long time. This would help to gain some additional information if she still has enough room in her head or if the mid face surgery is a must. I knew at heart what the answer was going to be. I was just praying for different results. As prepared as I was to hear what those results were it still just stinks. Then came the shocker - Callie needs neck surgery..again. I thought we were past this. What. Her first two vertebrae's were growing inward making the room for her spinal cord too small. This is the same thing Zak went through. I thought we would avoid this with her. Yes - I am still in a little shock and it has been over a month. Then followed by - her ventricles are large as well, we need to tap her shunt. I wanted to puke, I was still absorbing neck surgery. So they taped her shunt to find there was not great flow and possibly had a clogged tubing or something malfunctioning. The whole thing is still a big haze. More tests, more doctors, more conversations and in less than 24 hours she was in surgery to replace some tubing. Chris went with her and I went to work. Someone needed to stay home with Zak. It breaks my heart knowing she is in surgery and I am 172 miles away. She had her daddy with her though, and he is such an amazing father. My kids are very lucky to have a father who cares so much for them. His eyes glow when he talks about how proud of them that he is. 2 days later they were home and the shock was starting to mellow out a little. 1 week later though the panic set in. There was a leak from the incision site, spinal fluid. Back to get stitches and stop the leak followed by a week of antibiotics in hopes to avoid an infection. At our follow up the doctor wanted a spinal tap. I never even thought twice about it when Chris told me (he is the one that took her in). The next day they called to tell us we needed to come in to have the shunt removed. Shock set in again. What on earth, she was not even symptomatic. She was my happy little girl crawling around. Chris brought her back in and out came the shunt. 2 days later they did not come home like the last time, but I drove over to MN to switch out "duties" with him. Today is the 5th day in the hospital and part of me is broken. I just want my baby girl to be home with all of us playing on the floor. This was our first real holiday in a long time we spent in the Hospital (sorry, I don't consider Halloween a "real" holiday). I sat her reflecting on Jesus, and saying my prayers. Thinking of the families I know that don't get to spend this holiday with their loved ones - especially their children and how selfish I am being because I am sad we are in the hospital and not on top of Rib Mountain with my family at Church. I am trying to be strong for my Family - especially Callie. I woke up today thinking it is a new day and we are one day closer to going home. Test results came back negative - we need to just wait to make sure they continue to stay negative. GREAT NEWS. I really needed that. And then for the first time ever as my friends asked me how am I doing I just responded - Sad. I don't usually show my emotions, its just easier to be factual with what I know from the medical stand point. But today I am Mom, I am Zak and Callie's Mom and I am sad that Callie has to be in the hospital and that I did not get to tuck Zak in Bed, but I am also so incredibly grateful that I get to be here with Callie and hug her and kiss he and love her up any minute that I need to because my biggest fear is too lose her. Thankfully God has blessed us with such an amazing group of caregivers and this was caught before it was too late. So really siting in the hospital is not the worst thing. We will get through this and soon we will all be snuggling tight on the couch.

When I started this I thought I was out of words, but I realize I had so many more.

Reflections

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!

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:

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.

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.

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.

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!

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!