Happy Girl

Callie is a NEW girl! She was diagnosed with pneumonia last Wednesday. Poor Callie was not doing well. Thankfully she was not to bad and was able to stay home. By Monday you would not even know she was sick. Due to her being sick they canceled her surgery for ear tubes. They would like her healthy for 4-6 weeks before the surgery. Also, she got her BiPAP (breathing machine for sleep apnea) on Friday. The first night she slept 9 hours straight! That brought tears to my eyes. Saturday she did not think sleep was quick as important 4 hours and she was good to go. Last night she slept 11 hours straight. I was so impressed! It is amazing the difference in Callie. She is so well rested. She has so much energy.. and she is full of it! Tonight she learned a fun trick.. trying to fall on her butt from a stand. She thought it was quite funny. I have never seen her so silly.

As for her doctors appointment and results from on her tests... well we still don't have many answers. Our doctor is checking with a few other doctors and we will be going to Madison at the end of the month to meet a pediatric pulmonologist. Hopefully we will have more information soon.

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.

Updates from the clinic

Callie had Clinic appointments all day on Thursday. Things were ok, nothing great other than her weight. They were very happy with that.

As for her heart, it is the same. Which is great news as it has not got worse. However she will most likely need surgery at some point. Hopefully we can still wait a few years, but each time we go in we will learn more. She does not see the heart doctor for 6 months again. Basically the pulmonary valve us thicker creating a heart murmur. She also has the hole in her heart from birth that is not closing. They will continue to watch the structure of her heart, at this point both chambers are functioning equally.

We also saw the ear Nose and Throat doctor as there has been some concern with her having fluid in her ears that has not gone away. Chris has been concerned with hear hearing as well. They did determine she does have a lot of fluid in her ears where the ear drum is not even moving so she will be needing ear tubes. We are scheduled for Jan 11^th. We will have to spend the night in the ICU as they are worried about her breathing and apnea spells since she is always on oxygen when she sleeps. 

This Tuesday they are going to do a barium test to see where the food is going when she is fed through the g-tube. She gags a lot and sometimes (more often than not) she gets food up into her mouth and she should not be able to since she had stomach surgery. After the test we will meet with the doctor to see what exactly may be going on.

We are still working on the apnea and oxygen issues. We are not sure yet what the next step will be. As soon as we know we will be sure to post.

This week Zak also goes in for Special Needs clinic where they evaluate all his skills and determine if additional equipment will be needed.

So much to say

So much to say, yet so little time. I really have no idea where time goes.

Last weekend Amy (nurse) and I took the kids to Trigs since they were having there pumpkin fest. We did not go last year, but always have loved to have Zak take his picture by the scarecrow to see how big he is getting. 

Steeling Mom's Sun Glasses.. Cool Dude!

Playing with the pumpkins..standing all by himself!

Callie checking out all the colors. Last year she was to sick to go out and enjoy October

Humm.. That might be bigger than me!

Two feet Tall!

Just because I am cute

Through all the fun Callie once again had the poops.. For a week. Last Sunday she seemed like she was getting a cold. She was still on her nebulizer (breathing) treatments. I just felt it might be a long few days. By Monday afternoon she had a fever, and I knew for sure she was sick. Monday night she had 8 loose stools and we knew that was not good. We went to the doctors on Tuesday and asked for stool studies and wanted to make sure her lungs sounded ok. They said to keep up with the nebulizer treatments and did give us a stool kit to take home. Wednesday the kit was brought back, Thank you to our nurse for collecting the mess over night. By Thursday we had a call and she was positive for c-diff

http://en.wikipedia.org/wiki/Clostridium_difficile

Basically a bacteria infection from to many antibiotics. She was put on meds right away and so far they seem to be working. She is slowing getting back to normal. Friday she started to have more issues breathing again, and she had a little wheezing. We just were not comfortable going into the weekend with her being sick so we took her to the pediatric walk in. The doctor thought it was viral, but was concerned why her breathing was not getting any better so she put Callie on an oral steroid. She has been getting a little better. We go in tomorrow to meet with our doctor for a follow up.

As for Zak, he has a major ear infection. We started to treat it with the typical drops that he gets and it just did not seem like it was working. The drainage smelt awful. By Friday he has some blood coming out his ear. We talked to ENT and he was put on an oral antibiotic as well. Hopefully he will start to improve soon.

He did have a good week at school. On Thursday his class went to the local grocery store since they were learning about the marketplace. He was having fun picking things off the shelf :) He also pushed his wheelchair by himself meaningful!! Way to go Zak!!!.. The report is he is a little more right dominant, but at this point any pushing is great. We are so proud of him. He got another gold star at school!

Thursday night Chris and I went to Nigburs to meet with Debbie. She was at the house the week prior to see our style. She showed us some things in the store to get a better idea of what we liked and who we are. She is amazing! She has such great ideas and really has taken an interest in the Build From the Heart project. I strongly suggest going to visit her and the staff at Nigburs! I am not saying that just because they are helping with the project, but I sincearly mean it.

By Friday we were all feeling exhausted. The night was a long night for me as my throat was throbbing. I figured we were all just going to share the fun cold that was going around. I was at the clinic for a followup for me so I asked the doctor to look at my throat... sure enough I had tonsillitis. Ahhh. No wonder my throat hurt. This really has gotten to be a routine thing for me lately.

This weekend was spent trying to get things done around the house. Christ got the gutters put on the back of the house on Saturday. I went grocery shopping when he got in and also picked up a movie from the Red Box. Whom ever thought up that idea - it was a great one. We watched the Experiment.

Today we watched the packers game and had some close friends over for dinner.. the Golbach's. It has been so long since we have been able to spend some time with them. It was so nice just to catch up, but really where does the time go?

Here is another picture from the week. Zak helping Callie make sure she get her nebulizer treatment. What a nice brother to help out.

Zak Crawling.. or should I say running since he saw me take out the camera

And the House!! What an exciting week. Among all the running around I could not wait each day to get home and see the progress.

This is on Thursday afternoon. The footings were in and walls were poured. 

Chris checking this out.

This week they are going to back fill and I am not sure what else. Check back for an update! 

Tomorrow night we are meeting with the whole interior design team. They are an amazing team. I cannot wait to see what this meeting brings. 

Doctors apointments

The kids had there doctors appointments this week. Zak's MRI on his neck went very well. We are happy to say things look great! They showed us the scan of his spinal Cord prior to the surgery and now 2 1/2 years later. It is amazing to see the changes. His spinal cord was 1/3 the size it is now. We are so thankful everything was a success and have not had any more issues. He also met with GI and nutrition. Everything looks good. He is up to 33 pounds.

Callie's also went well. She had all of her developmental evaluations in the morning. They did recommend a benik vest. It looks like a neoprene life jacket that fits tight. It will help her sit up more straight when we are working on therapy. She is also going to get Ankle Foot Orthotics (AFO's). These are ankle braces that will help her ankle stay at a 90 degrees bend so she does not lock her knees when she stands. We pick those up in 2 weeks. She also met with GI and nutrition. They are pleased with how she is doing. We got back in December to re-check her formula. That will most likely be our last visit with Dr. Park as he is getting ready to retire. He is an amazing doctor and has been a huge asset to our medical team over the years. We will miss him so much!!!

This will be another busy week as Zak starts school!!

House work

The weekend was full of projects around the house! Saturday was spent outside! It was perfect working weather, I even got a burn! I should have known better too. We dug out all the raspberries in our planter and moved them to Mom and Dad's house. There must have been 30 plants. We should have counted! To think we planted 5 of them 2 years ago. Hopefully most of them will make it and we will have lots of berries. Then we put out the fountain and re mulched. It looks so nice. We also put up the trampoline for the first time in 5 years! (Since Zak was born.) It was fun to bounce, I forgot how good of a work out you can get. Zak bounced too! At first he hated it. Granted he hates the outdoors most of the time. Then he got into it and started to laugh. Sammi also got her turn. I really need to video tape her and send it to Americas Funniest Video. I cannot stop laughing. She pounces, must think something is under her.

Sunday was full of indoor projects! We finished our painting in the basement. All of the Ugly Yellow striped paneling is gone! More toys have been put away, the basement is all clean –ok well mostly clean.

We lost more fish! Seriously, I cannot keep fish alive. I am thinking it is time for the tank to be sold. We just bought 8 new fish since we were down to 1 and he was lonely. One of them brought Ick to the tank. We lost “Old Guy” that was the one we have had for a while and needed a friend. All the tetras and now have 3 guppies. Anyone want fish? We originally got the tank from winning Fair Fish – They were Zak’s fish. I love to sit and watch them, it is relaxing, but the headache they bring is really not worth it. Zak will look at the tank, but he would rather stick his hand in.

Last night Zak came down with a cold.. bummer. We were doing so well too. I hear it is really going around. Seems like everyone has a sick child. I guess we were doomed. He had a horrible night, poor guy. Snot everywhere! Probably no school tomorrow. The nurses at home were busy cleaning all the toys today! I pray Callie does not get it and Zak can get healthy quickly without any doctor visits.

We also had Callie into the clinic again today. Her feeding tube site is getting more red. I remember going through these stages with Zak when his site was new too. I am actually surprised the site has been doing so well. It has been 5 months since her surgery. So much for our Month of April without Doctors. We knew it was bound to happen. So she has a pretty bad infection. The Doctor said if it does not get much better soon we will be in Marshfield with IV antibiotics. We pray it heals soon! Also her right ear tube fell out at the clinic so we kept it. It is so tiny! Smaller then the typically since she was only 7lb when it was put in. Also she has a double ear infection! WOW. Poor little girl, she really does not act miserable, but she has to be.

This weekend we have some very close friends coming to visit from MN. I hope our kids are healthy enough for them to come. It sounds like they will be here either way. They have 4 kids, so between their family activities, sports, church and our kids with illness and hospital visits it is so hard to get together. We miss them and cannot wait to see everyone. This past weekend when we were cleaning we found pictures of the kids when they were probably 3 or 4 years old.. now they are 11 and 13. Wow how kids grow so quickly!

Callie's Heart

We had Callie's heart appointment today. It went very well. For the first time in twelve months we heard the words "her heart stabilized!" To us this is good news since it did not get worse. This time we get to wait 3 months before we go in for a recheck. We continue to pray for her heart to get better. After all it was bout 18 months old when Zak's heart started to get better.
Thank you again for everyone's support.