Sleep Apnea - Confirmed

Callie had her Sleep study last night. She did amazingly well. I was so proud of her!
We checked into St. Joesph hospital last night at 6pm. We meet the Tech (Tami) right away. She was amazing. She did such a great job getting Callie hooked up, working with us all night and explaining everything to us. I hope if we ever have to do this again we can request her. I cannot say enough great things about her. She made the experience so much better.

With in the first hour of Callie sleeping she had 109 apnea episodes. (That was not a typo). I could not believe it when I heard it. The good news is it is mainly obstructive, which can hopefully be fixed. At some point Callie will need to have her tonsils and adenoids removed just like big brother Zak. She was fitted for a bi pap (face mask that will help her breath during sleep). We hope to get this in the next couple of days. This brought tears to our eyes.. we are finally getting answers and help for our baby girl.

During the night she did get Zak's cold. She spiked a fever and nasty cough with wheezing. The doctor sent us home on oral steroids so hopefully that will do the trick. She has been doing good, however she is now on constant oxygen. I pray she gets better quickly.

We go back to the doctor for her pre-opp next Monday. If she is not better she will not be having her ear tube surgery. We hope to all get some more answers on all the scans at that time.

Thank you everyone for all of your support. We always appreciate the wonderful e-mails and comments of prayers and "think of you". We have such a wonderful support around us or Family, Friends, Nurses and Doctors. We are very grateful to have the support through all of this testing.


Callie getting all her wires on

Finally asleep - this was her first hour.

Can you imagine trying to sleep like this?

Almost done with our first hour.

Kid Pictures

 Thank you to every one for all of the thoughts and prayers. Here are some picture of our last few weeks. Tonight we go in for Callie's Sleep study. Hopefully we can finally get some answers.

Zak at School working on the Computer

 On the Way to the Clinic for Tests

 First Attempt at Tests - All Ready to go

 Zak being silly

 Round 2.. lets try again

 Poor Girl, she has no idea what is next

 All ready to go. Callie has a breathing tube in for

her so the tests should be easier this time

 All done and the tube is removed

 Resetting her Shunt since she had an MRI

 All ready to go home

More House Pictures

Drywall is started!!!

Zak's Room

Dinning Room

Living room Looking down the hall

Dinning room and Entry

House Pictures

Look at the Ice!!

No Answers Yet

Today we went to the Hospital to have Callie Sedated again and have an MRI and CT. We were admitted right into the PICU. It has been slightly over a year since we have been there. We were greeted in the hallway by all of our favorite nurses. It was great to see all the friendly faces again along with a few new ones. The sedation and intubation went very well. The tests took about an Hour. She woke up very well and was her typical self very quickly. Since she was doing so well they let us go home today. We were discharged at 4:00 and met with neurology. We really did not have any answers yet since the Radiologist had not read the reports. We have also been scheduled for a sleep study for Sunday night. This will help to answer some more of the questions. Both our Neurologist and Pediatrician are out of the office next week so I am not sure how much information we will get.

Also, Zak now has a Cold so he stayed home from school today. I am hoping he can keep it to him self and not share with the family.

As soon as we know more I will be sure to post it.

Airway Issues

Callie was into the Clinic today to have a CT and MRI to try and figure out what is going on with her airway and respiratory issues. She has been on 1-3Litters of Oxygen while she is sleeping and also having apnea spells. We were hoping to leave with some answers. Unfortunately, we do not have any answers, but more questions.

Callie was prepped and brought back for her MRI, shortly in she was having issues with her breathing. The doctor determined this was not a safe procedure for her and she would need to be intubated to complete the tests safely for her. They were not going to do this today as it is more invasive for her. We knew she was having issues, but did not realize to this extent. it was a moment of realization what we are really dealing with. Callie woke from sedation with no issues and has been her typical self today. Between the intensivist and the neurologist it was determined she should have the same two tests, but also a sleep study. She will go back in on Thursday morning to have the CT and MRI repeated. We have not heard when the Sleep study will be yet, we are hoping for next week. For all of the tests she will be admitted to the Peds ICU as she is a High Risk Patient.

I will try my best to post an update on Thursday as soon as we know something.

On the Home front.. with the new house. The insulation is complete. The dry wall was delivered today! I will post some pictures soon! We have picked out Cabinets, flooring and paint too. It is all coming together.

The Heat is on

The Heat is on at the House!!! Insulation has been started. We are using Foam insulation from Kulp. Soon to follow will be the dry wall. It is exciting to see the progress. Also, we are starting to pick out the cabinets, counter tops and thinking about the wall color. Most of the flooring has been picked out. We just need to finalize the carpet choice for upstairs. I will be posting pictures again soon!

As for the kids, Zak has something going on with him. I am hoping it is just teeth. Callie is doing well, but still having issues with her Oxygen so we will have tests ran next week. We are hoping for good news, but most importantly answers

Also, on a sad note. My Aunt Arlene (Dad's Sister) passed away this past weekend. She was such a caring person, always thinking of others. She made the kids gorgeous quilts when they were born that we will always treasure. Our Prayers are with Uncle Gary and the rest of the family during this difficult time.

Happy New Year

Happy New Year ~ May 2011 bring you Health and Happiness

2010 was quite the year. So many thing to reflect on.

• The happiest most exciting of them all is the start of "Build from the Heart". So many people coming together to help our family build a home for our children with a community room to give back. After many months of planning the digging began. We have been very grateful for the many of people donating there time, labor, materials. Everything from the workers at the job site, the planning committee, the fundraising committee, the hosts of the fundraisers - St. Andrew Lutheran Church and Grand Lodge to the many of monetary and product donations that we have received. We have met some absolutely amazing giving people through this community project. Our life has truly changed!
• From the most exciting to to very sad. Chris lost two Aunts this year and a great uncle. Aunt Betty, Aunt Jo and Great Uncle Bill will be remembered in our hearts forever.
• NO SURGERY! The whole year with out one surgery! And there was only 1 hospitalization. That is HUGE. Granted we have had our share of illnesses in the house: C-diff (Stomach issues), Pneumonia, Colds, Respiratory issues, ear infections, Mrsa,  Head banging, many many clinic visits - but thankfully having nurses at home has kept us away from the hospital. There were several times I thought we would be checking in and with the wonderful care we receive at home we were able to do treatments here.
• Family Vacation - This year our time as a family was spent traveling to ND for my cousins wedding. We really did not do much on the trip, but it was wonderful just to get away and see family.. not to mention the bride was gorgeous and they make an amazing couple!
• Speaking of weddings - The following weekend after our family trip we had another family wedding. Chris, Zak and I were in Chris's Sisters wedding. She too was a beautiful bride. The wedding was so much fun, and again it was great to see family. June was a busy month!
• Chris took his own vacation this year. A friend gave him a trip to Canada where they went deer hunting. He got an 8 pointer! It was nice for him to be able to get away and do something he really enjoys.

So what will 2011 bring?

• Moving! We hope to be moving in March or April into the new house. Hopefully soon after we can have our first play group and parent support group!
• More tests and more doctors. We hope to have a Ct Scan on Callie's Lung. She has been on oxygen since July with really no explanation. She has a spot on her lung that no one knows what is. Hopefully we can get some answers. Then at the beginning of February she will have ear tubes put in and an upper GI scope to see if there is any damage from her acid reflux. We continue to pray her heart stays stable (or better yet just gets better).
• As for Zak.. just stay healthy. No major testing scheduled yet, but we will be meeting with neurosurgery again for his neck and sleep apnea for a follow up.
• As for the rest of the year.. who knows?  Keep reading to find out....

Christmas Poem

I received a Christmas card this year that said it all. I really like this poem.

GOD'S GIFT

Little baby on the hay,
soon there'll be another day
when nails shall pierce
Your hands and feet
as You provide our sin's defeat.
Risen Jesus on the throne,
we lift our raise to Your alone ~
for You're the gift that we receive
the moment that our hearts believe.
          ~Ron Lessin