Callie Surgery

As many of you know Callie’s Nasal passage were closed at birth and had to have surgery to reopen them. In February we had them scoped while having her tonsils out as we felt they were closed again and they were.

We were referred to Milwaukee to see a facial cranial surgeon to re-fix the choanal atresia (nasal obstruction). Much to our shock he told us Callie’s first issue is actually that her brain is too large for her skull and that she needed to have this fixed first. The reasoning behind this was she had excessive ‘thumb printing’ in her skull (basically the skull was no longer smooth and it was taking on the shape of her brain). He suggested moving the forehead and mid face out ½ inch. She would be sent home with pins that we would turn for 3 weeks. Once this was complete Callie could have the nose repaired.

Once we returned to Wausau this was discussed with our team of specialists and they thought this seemed very extensive and somewhat unnecessary. The local team thought the ‘thumb printing’ was from her hydrocephalus (extra fluid in her brain – repaired with a shunt when she was 6 mo) at birth and wanted a second opinion. We were refereed to Gillette Children’s in MN. While the referral was taking place we received all of the paperwork from Milwaukee and much to our surprise the radiology report mentioned a malformation of her neck – this was the first time we heard this. Milwaukee never once mentioned this to us while we were there.

We recently went to MN and met with the facial cranial doctor there. The clinic was absolutely amazing – extremely organized, detailed and willing to work with us. The doctor explained to us that the ‘thumb printing’ has increased since her the hydrocephalus was present in 2009. Since this was repaired he would not expect this to get worse. Also, he said the that her sutures in her brain are 100% fused. This should not be the case for a 3 year old. He even pointed out that should also not be the case at 30 years old. He said Callie absolutely needs surgery to fix this. She was officially diagnosed as having craniosynotosis. Also he was very concerned with her neck and brought in the neurosurgeon that day to see us. They ran a quick MRI while Callie was awake and Chris held her. They did learn that her spinal cord is compressed at the skull and C1 just as Zak’s was. The big difference is he does not feel that Callie’s neck is unstable and will need to be fused as Zak’s was. He believes that by just removing a piece of bone this will resolve the issue. All in all, the final determination was made this needs to be the first surgery to take place. While she is getting the neck fixed they will also extend the back of her skull to allow the brain to have the room needed. They will not be putting in any pins for us to turn (which was a relief to hear). Once that is complete we will wait 6-8 weeks to have a second surgery to extend the forehead and a third to extend the mid-face. We also saw an ENT while we were there in regards to the original issue, Choanal atresia and she was not the right person, however referred us to her partner whom she felt would be the right person. We need to make a follow up appointment with him while we are in MN.

Callie is scheduled for her first surgery on Monday October 29th. As for now she will spend 1 night in the ICU and 3-4 nights on the floor. Please say lots of prayers for Callie and family while she is going through this. We know she is in great hands at Gillette and they will take great care of her. We are very grateful to have such a wonderful group of support around our family.

A list of Updates

School has started and we have made it through a few weeks now!

Zak is at the same school as he was last year. He will remain in the same class through 5th grade. A few kids have graduated and a few have joined. He seems to really like his classmates as usual. I have been hearing wonderful things about the progress he continues to make from his Therapists and Teacher. One of his therapists that has not seen him on land (he does aquatic therapy with her) was very excited to see him walking in his gait trainer (walker for bigger kids) and pushing himself is his wheelchair. He is making such great accomplishments! He really enjoys his friends in other classes too, the 3rd grades read to them and he does sign language and other activities with the 1st graders. He is just getting to be such a big boy!

Callie is in her 2nd year of pre-k with Mrs. Amy. Callie continues to get her schooling at home where the teacher and therapists come to her. The reason we have chosen this option is to keep her healthy with the unknown surgeries ahead of us. All of her teachers/therapists have been very happy with her gains through the summer. Each week I am constantly thinking what happened to our little baby. She truly has gotten to be so big and little miss independent. Although she always has been our independent one. She is doing so many new things lately. The teacher just told me this week that she achieved one of her goals already!

We are so proud of our little babies!!

Medical Updates

There has been a lot of things going on with Callie in the Medical area. Very little with Zak and we pray it will stay that way.

Both kids had their annual special needs clinic appointment in Marshfield where several doctors and therapists get together and do a review of their progress. Everyone was very positive on Zak’s progress. He did end up getting Botox in his legs to loosen the muscles up. This should help in his walking by keeping him flat footed rather than on his tip toes. It should also help in stretching him. So far it has proven to be a success as he is already walking and standing better! Callie also had a positive appointment. We are soon going to be getting her a wheelchair too. This will help in keeping her in the proper seat position instead of a stroller and highchair. She also recently started to experiment with crawling. When she knows you are watching forget it. But when she is playing by herself she takes several steps before starting to roll!

Also, we have been watching Callie closely since she was a year old for her heart. She has pulmonary stenosis, which means the pulmonary valve (Pumps blood to the lungs) is smaller than it should be. She also has the hole in her heart still that many babies are born with. She progressively got worse up until she was a year and has maintained since. She went in at the end of August for her annual appointment which went well, however she moves to much these days to get good images so we elected to sedate her for images. She just had those images last week and her heart is still stable (even a very small amount better – which better is always nice to hear even if it is a small amount). The doctor continues to consult with the Milwaukee heart surgery team as at some point she will need surgery, however we continue to wait.

Also, Callie will be having some other surgeries for the remainder of the year.. I have done a separate post just for that one as there is so much to it.

Chris and Annie

With the little time that remains we have found a little time for ourselves. Chris continues to travel for work so the weeks are always hectic. This past weekend he was able to go duck hunting which is something he was not able to enjoy doing last year. Hopefully he will be able to spend more time out this fall between duck and deer hunting. As for Annie, well she joined her very first 5k run. The girls and her are heading to Madison on Oct 12th for an overnight stay as the run is on Sat. It supports Ronald McDonald house which you all know is very near and dear to our heart as they have provided our family with a place to stay and support throughout the past 7 ½ years.

Pictures from Annie

Click here to view these pictures larger

10 Years and Counting

Chris and I recently celebrated our 10 year anniversary. It is hard to believe how much we have grown and changed together in the past 10 years. I truly married my best friend and am so grateful to have Chris and his family part of my life. All if fun I put my wedding dress back on and we took a few pictures in the back yard! It fit once again :)



And 10 years Ago!!

Shared Blessings, Inc WON!!!!!

Shared Blessings, Inc. won the $5,000 from the River Valley Bank Community for a Cause charitable program! We are all SO EXCITED!! A very special thank you to all those that took time out of their busy schedules to vote for Shared Blessings, Inc. and huge THANK YOU to River Valley Bank for providing this amazing opportunity to community organizations like Shared Blessing, Inc.' and for being so incredibly kind and charitable. You have truly made a difference in the lives of children with special needs. The doors to Shared Blessings, Inc.  are opening thanks to all of you!

Watch for more information on Shared Blessings, Inc. Soon! We have recently started a Facebook page as well! http://www.facebook.com/SharedBlessingsInc?ref=hl

Next week we will be meeting with River Valley Bank for the presentation of the check. As soon as we do that I will be sure to post pictures!

Where does time go?

It has been a long time since I have posted. The great news is I have been busy with Shared Blessing, Inc which is why I have not wrote much lately. I decided I needed to take a quick break and get back on track with the blog too.

Where has time gone. I feel like the summer is flying by. Zak did 6 weeks of summer school and was able to swim at school for an hour each day. He is a BIG fish! He has been progressing so much. We have a pool at home now too. Zak cannot touch as it is 4 feet deep. We put him in the floating and he swims on his own. My brother got to see him and was so surprised how well he does. He makes us so Proud how well he has come.

Callie is still a little spit fire. She has taken up crawling a little bit. She will take several steps in a row now. She does not do it often but a little bit each day. Soon she will be all over the house. I cannot wait! She too likes the pool. Not quite as much as Zak, but she enjoys herself. This is her first year in a big pool. At the beginning she would cry when she got in (which she does with a bath too, so no big surprise). Now it is all of 30 seconds and she is happy. She loves to splash and spin in circles. We too are so proud of how well she is doing.

As for medical thankfully that has gotten better in comparison to the beginning of the year. Callie did have her 3^rd eye surgery for the ptosis (lazy eyelid) which the surgery itself was a success, however she did get MRSA (Staph infection very had to treat with first line antibiotics) in one of the incisions above her eyebrow. With the antibiotics that she had to be on to treat the infection she ended up with c-diff (severe diarrhea and other intestinal disease when competing bacteria in the stomach flora have been wiped out by antibiotics.). This was an ongoing issues for about a month and a half and thankfully is doing great now.
As for Zak, he had some retesting done for is immunity and is being watched for an antibody disorder. His levels were low therefore they gave him an injection which raised them and retested again. He responded well and his levels did increase. They will retest him again in a year and see how he does. Also, he had an adult tooth come in behind a baby tooth. We all wiggled it as much as possible and it just was not coming out. The dentist had to finally pull it just to get it out. He did amazing with it and did not even cry once.

This coming week will be a travel to Milwaukee for Callie. It was determined through her sleep study, scope and CT that she has a deviated septum and the surgery she had a birth for Coanal Atresia (nasal airway closed) is starting to close again on her right nostril. We are not sure what all that means yet so we are going to see a new doctor in Milwaukee that specializes in this. They will so a much more detailed CT scan and then we will meet with him. Tuesday we spend the day in Marshfield with both kids as they have their annual special needs clinic where they meet with several doctors and therapists to be sure we are following the proper care plan for each child and receiving the correct therapies. They also determine if they have any other medical needs or equipment needs. As much as I hate it since it becomes very apparent what additional needs they do have, it is very helpful to have a whole team working together to make sure we are getting the proper treatments for both kids.

Stay tuned - I hope to be better with my posts!

As for Shared Blessings, Inc. Lots of very exciting things happening. The Board has been very busy meeting trying to get all the paper work done to actually open the doors this fall. We have an amazing group of very diverse individuals on the board. We have started a Facebook page ( search for Shared Blessings, Inc). We are starting to work on a Fundraiser for the fall/winter. Watch for more details to come. The non-profit application is complete and ready to be mailed out. If you want more information on helping or being involved with Shared Blessings, Inc. please send me an e-mail at cateeters@charter.net

We need your help!

Build from the Heart (the project that helped to Build our family a handicap home with a Community room for Special Needs Families) is now complete! The home and community area are built and now it is time to open the doors. Shared Blessings, Inc is the name of the non-profit that will be starting in the Community room. This will allow a place for special needs children and their families to go for playgroups, support groups and ongoing education and relationships. Something much needed in our community.

River Valley Bank was one of the major Sponsors behind Build from the Heart! They are currently running a new program Community for a Cause. Giving away a total of $7,000! First place will receive $5,000 and 2^nd and 3^rd will receive $1,000 each. Shared Blessings, Inc has posted our video and made it into the top 6 nominees. Now we need your help! The video with the most votes wins.

 You can vote once per day for the next 3 weeks.

 Direct link: http://apps.facebook.com/contestshq/contests/222731/voteable_entries

To access the voting page search Facebook for River Valley Bank. Click on the icon towards the top is an icon C4C. Choose Vote now. Find Shared Blessings, Inc. and vote daily!!

Thank you for your continued support in helping up start the playgroups for the many families around Marathon County and surrounding areas sooner rather than later!