It was a busy weekend full of running for the family. Sat was spent running around during the day. Then off to a wedding for one of Chris's High School Friends. It was the first of 3 weddings we know about for the year. The other two in June.
Today we went to visit Chris's aunt in Hospice near Milwaukee. The kids traveled well on the way down, but the way back was a bit more challenging as they both fought sleep. I on the other hand enjoyed my hour nap. Our thoughts and prayers are with the whole family as they go through this difficult time.
Sunday, February 28, 2010
Tuesday, February 23, 2010
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.
Thank you again for everyone's support.
Sunday, February 21, 2010
New Glasses
Zak got new glasses this week.. Isn't he adorable! He has had glasses since he was about a year old. He just won't keep anything on his face. And if someone else has glasses on, he takes them off. We have not worked with him on glasses for about 6 months now and he has out grown his old ones. It was time to get a new pair and see if we can get him to keep them on his face. 
This week was a good week.. and now we are all sick! Ugh. We had a meeting with the school District on Tuesday. Our head nurse came with as she has a lot of experience with nurses going to school with children. Our school district has never had private nurses go to school with a child so there was a lot of information to go over. It sounds like it is a go! We also decided Zak won't be ridding the bus any more. We are going to have nurses or us take him to school after we identified it is not the best solution. If Zak was to start gaging to get gas out (since he cannot burp after his stomach surgery). They would pull over the bus and call 911. By the time they got there it could be too late. Zak needs to be vented right away to avoid any issues with his stomach surgery or aspiration. We did not find this out until now that no one of the bus would vent him. I was not happy to say the least, although we have a solution for the rest of the school year.
Thursday we took Zak to MN for his Shriner's appointment and to see how his wheelchair is fitting him. They were very happy with everything. It is such a different experience from most doctors appointments. They are 100% geared to the children and families. They have the attitude of we will work with you and do what ever it takes. I just love the environment. We did have a few minor modification to his chair. Next year when we go back (or even maybe sooner) he will need a few more extensive changes as he grows. It is definitely worth the drive. We were also able to stop in Woodbury and do a little shopping.. Of course we stopped at my favorite store. Carters! I think it is a good thing we don't have one closer. I just love there clothes for the kids as they hold up so well and when they are in the same size for so long we need quality.
Friday night we actually ventured out for dinner. We took both kids to a fish fry with Grandma, Grandpa and Great Grandma. I think this was the 3rd time in a year Callie had been to dinner. Both kids did very well. We did not have a night nursing - it is always a great reminder how thankful we are to have night nursing. We have always said we do agree it is a parents job to get up with there child at night. After all that is what parents do. Well Chris was up until 1:30 (while I slept). Then I got up with Callie (and Chris was able to get some rest). I was able to catch a 45 minute nap on my shift, but other than that did not get any sleep. Callie is getting a cold and just was not a happy girl. People always ask us how do you do it and our typically response is you just do what you need to do. Nights like Friday are the nice reminders that I ask my self, how did we ever do this when both kids were getting up all the time and we both work full time? Thank god for our nursing staff or that is still what we would be doing. Granted we still get up a few times when we have nurses, however it is to check on the kids when they cry or get Zak calmed back down. But we get to go back to sleep rather than stay up for another 5 hours.
Yesterday was Egg Roll Day! We made home made egg rolls with Chris's parents. There is just nothing like a homemade egg roll! Yummy. We had lots of left overs to put in the freezer.
Today is a day to relax since both kids and I have colds. Hopefully Chris won't get it. I just cannot wait for summer. Although it has been a healthier year for us.
This week was a good week.. and now we are all sick! Ugh. We had a meeting with the school District on Tuesday. Our head nurse came with as she has a lot of experience with nurses going to school with children. Our school district has never had private nurses go to school with a child so there was a lot of information to go over. It sounds like it is a go! We also decided Zak won't be ridding the bus any more. We are going to have nurses or us take him to school after we identified it is not the best solution. If Zak was to start gaging to get gas out (since he cannot burp after his stomach surgery). They would pull over the bus and call 911. By the time they got there it could be too late. Zak needs to be vented right away to avoid any issues with his stomach surgery or aspiration. We did not find this out until now that no one of the bus would vent him. I was not happy to say the least, although we have a solution for the rest of the school year.
Thursday we took Zak to MN for his Shriner's appointment and to see how his wheelchair is fitting him. They were very happy with everything. It is such a different experience from most doctors appointments. They are 100% geared to the children and families. They have the attitude of we will work with you and do what ever it takes. I just love the environment. We did have a few minor modification to his chair. Next year when we go back (or even maybe sooner) he will need a few more extensive changes as he grows. It is definitely worth the drive. We were also able to stop in Woodbury and do a little shopping.. Of course we stopped at my favorite store. Carters! I think it is a good thing we don't have one closer. I just love there clothes for the kids as they hold up so well and when they are in the same size for so long we need quality.
Friday night we actually ventured out for dinner. We took both kids to a fish fry with Grandma, Grandpa and Great Grandma. I think this was the 3rd time in a year Callie had been to dinner. Both kids did very well. We did not have a night nursing - it is always a great reminder how thankful we are to have night nursing. We have always said we do agree it is a parents job to get up with there child at night. After all that is what parents do. Well Chris was up until 1:30 (while I slept). Then I got up with Callie (and Chris was able to get some rest). I was able to catch a 45 minute nap on my shift, but other than that did not get any sleep. Callie is getting a cold and just was not a happy girl. People always ask us how do you do it and our typically response is you just do what you need to do. Nights like Friday are the nice reminders that I ask my self, how did we ever do this when both kids were getting up all the time and we both work full time? Thank god for our nursing staff or that is still what we would be doing. Granted we still get up a few times when we have nurses, however it is to check on the kids when they cry or get Zak calmed back down. But we get to go back to sleep rather than stay up for another 5 hours.
Yesterday was Egg Roll Day! We made home made egg rolls with Chris's parents. There is just nothing like a homemade egg roll! Yummy. We had lots of left overs to put in the freezer.
Today is a day to relax since both kids and I have colds. Hopefully Chris won't get it. I just cannot wait for summer. Although it has been a healthier year for us.
Tuesday, February 16, 2010
Happy Birthday Callie
Where did the time go? Callie Turned 1 on the 11th! We had her party this last weekend. She sure liked her frosting
It has been a long year. A roller coaster to say the least. Callie is an absolute joy to be around. She is finally starting to feel good and is full of smiles! It is great to see her happy. I thought things would be easier the second time around, but Callie has had her fair share of challenges. When she was born she could not breather through her nose. Day 6 she had nose surgery to open her air way. While she was in the NICU she also had her Frenulum cut, at 3months old she had her stints removed. Soon after we learned she had fluid in her brain and it was brain surgery (a 3rd ventriculostomy). We learned shortly after the procedure did not work and she would need a shunt. She also had eye surgery at the same time. Finally we made the decision for a feeding tube which also meant more stomach surgery to fix her reflux. We also decided to do ear tubes at the same time. Over Christmas Callie had her two bottom teeth pulled. Hopefully 2010 can be a better year.
It has been a long year. A roller coaster to say the least. Callie is an absolute joy to be around. She is finally starting to feel good and is full of smiles! It is great to see her happy. I thought things would be easier the second time around, but Callie has had her fair share of challenges. When she was born she could not breather through her nose. Day 6 she had nose surgery to open her air way. While she was in the NICU she also had her Frenulum cut, at 3months old she had her stints removed. Soon after we learned she had fluid in her brain and it was brain surgery (a 3rd ventriculostomy). We learned shortly after the procedure did not work and she would need a shunt. She also had eye surgery at the same time. Finally we made the decision for a feeding tube which also meant more stomach surgery to fix her reflux. We also decided to do ear tubes at the same time. Over Christmas Callie had her two bottom teeth pulled. Hopefully 2010 can be a better year. Callie is almost sitting on her own. She is finally laying her tummy a little more and sure is showing her likes and dislikes. She is very interested in what is going on around her and I like to think she knows who Mom, Dad and big brother Zak are.
Look how far we have come in a year!
Look how far we have come in a year!
Tuesday, February 9, 2010
Home Medical
Yesterday was another eventful day in the Teeters House. Chris got up early to do his morning workout. I am woke from a deep sleep with him saying you need to get up NOW. I pop out of bed "what.. what" to find out Callie's g-tube feel out and we don't have a back up Mickey button. UGH! Now What? Chris remembered the doctor gave us an emergency back up just in case this would ever happen. Poor little Callie is full of gas from crying, we have no idea how this new gadget even works, but we will figure it out. So in it went. All of this followed by a twitching episode. Oh my. I really thought how could this happen. Hasn't she been through enough for one day? So as soon as the doctors opened for the day I was on the phone with Madison. her Benadryl was not doing anything. I patiently waited for a call back while I called into the home medical supply to tell them I needed a new mickey now. Come to find out they do not stock them so I had to wait a day (which is typical with the economy). OMG this poor girl. So I tell them to order two. Finally I get a call from Madison and they told me to give Callie an extra does of her Neurontin. Her neurological medication. Shockingly.. the twitching stopped. Oh my gosh. Something worked. I was so excited. It only lasted 12 hours compared to the normal 36-60. Is that all it is? If so what a miracle. How nice would that be!
So today Callie's mickey (g-tube) came in and we had to go pick it up. They did not even give us 2. They were really going to only give us one and keep the other stocked. I told them no way. I will keep it stocked at my house unless they want a call at 3am to get to our house in 5 minutes. Seriously, so if this one falls out what are we going to do. It is not our fault it broke in less than a week. By 5pm I left with 2 thankfully! Chris put in Callie's mickey. I can do Zak's and it does not bother me at all. I just really hate doing Callie's. It is so new and the pain in her face breaks my heart. Chris is so strong and just knows what needs to be done.
My hope is the next few days are clam and Callie can have a good birthday.
So today Callie's mickey (g-tube) came in and we had to go pick it up. They did not even give us 2. They were really going to only give us one and keep the other stocked. I told them no way. I will keep it stocked at my house unless they want a call at 3am to get to our house in 5 minutes. Seriously, so if this one falls out what are we going to do. It is not our fault it broke in less than a week. By 5pm I left with 2 thankfully! Chris put in Callie's mickey. I can do Zak's and it does not bother me at all. I just really hate doing Callie's. It is so new and the pain in her face breaks my heart. Chris is so strong and just knows what needs to be done.
My hope is the next few days are clam and Callie can have a good birthday.
Sunday, February 7, 2010
A long week
I am not sure where the week went and now the weekend is almost over with too!
We have all had colds for about 3 weeks. Just passing it around the family. Poor Zak always gets it the worst with terrible sinus infections. His immune system is horrible and it just takes him longer to get through it.. I definitely think he got that from me. I think we are almost completely over it all! Thank god!
Last weekend we spent a whole day cleaning and rearranging Zak's room! Going through medical supplies we kept "just in case". Thankfully the just in case never came for some of them. Also, we took down the Mickey stickers and up went Cars! I love it. Something new and I did not even need to paint.
Tuesday was a day spent at the clinic. We both hate the all day appointments. 7:45-5:30. What a LONG day. Both kids had appointments with PT, OT and Speech/Feeding for evaluations to see how they are doing and if they need any new equipment. Of course we were told how adjustments need to be made to his wheelchair, but they cannot touch it since we did not get it from them. We hear that all the time. Why would we get Zak's wheel chair from a clinic when we can go to MN to Shriners and that is what they specialize in. Not to mention if insurance denies anything they make sure we never have a bill. After the 1 year of fighting to explain why Zak needed his walker and being told time and time again by insurance he did not need it to walk I only wish we would have went to MN and been done with it. Then I would have not had to fight the battle for so long Also Shriners is so positive and always see the good things. They really helped us adjust to a wheelchair and accept it.
Ok, so after the therapy appointments we had the Neurology appointment where I asked several times about us seeing the doctor in Madison and every time the subject was ignored or changed. Seriously. So we never got any where on that issue. Then it was off to Genetics. The annual 1 hour session. So we are suppose to go to these appointments to make sure we are covering all the medical needs and if they happen to know of anything else we need to be checking into. I follow my yahoo groups, support groups and talk a lot to people. So We are typically doing all the talking and they do the listening. The comment was made that our over 50% of the population with there abnormality is sitting in this room. Well to be exact they are 100%. That is when it finally hit us.. is it really necesary to go? By all means I am all about sharing and helping the next person. If what we know can help another person I will share what I can. But exactly why should we be paying for the appointment? So off the x-ray for Zak where we learned he has Congenital Radial Dislocation of his left elbow. Meaning it dislocates and there is nothing the doctors can do about it. So no grabbing his hand to lift for any reason. Lastly it was GI for both kids. We love Dr. Park. He is the best doctor we have ever met. Absolutely amazing. I love these appointments. He was very happy with Zak. No changes and he always reminds us how far Zak has come and how worried he was about Zak when we first met. Zak really was a very sick little boy. Every time he reminds us I get teary. I never knew he was that sick - I just did not see it. All I saw was the cutest little boy. Then Callie was Next. He was also very happy with her. 2 good reports! She did get her Mickey button (g-tube) changed to a bigger size. She is much happier now. Now we can do the changes at home since she has the right size. Callie is now up to 11lb 5oz and 23 inches long. Zak was up to 31lb 8 oz and 40 inches!! Way to go kids..
Ok, so after the therapy appointments we had the Neurology appointment where I asked several times about us seeing the doctor in Madison and every time the subject was ignored or changed. Seriously. So we never got any where on that issue. Then it was off to Genetics. The annual 1 hour session. So we are suppose to go to these appointments to make sure we are covering all the medical needs and if they happen to know of anything else we need to be checking into. I follow my yahoo groups, support groups and talk a lot to people. So We are typically doing all the talking and they do the listening. The comment was made that our over 50% of the population with there abnormality is sitting in this room. Well to be exact they are 100%. That is when it finally hit us.. is it really necesary to go? By all means I am all about sharing and helping the next person. If what we know can help another person I will share what I can. But exactly why should we be paying for the appointment? So off the x-ray for Zak where we learned he has Congenital Radial Dislocation of his left elbow. Meaning it dislocates and there is nothing the doctors can do about it. So no grabbing his hand to lift for any reason. Lastly it was GI for both kids. We love Dr. Park. He is the best doctor we have ever met. Absolutely amazing. I love these appointments. He was very happy with Zak. No changes and he always reminds us how far Zak has come and how worried he was about Zak when we first met. Zak really was a very sick little boy. Every time he reminds us I get teary. I never knew he was that sick - I just did not see it. All I saw was the cutest little boy. Then Callie was Next. He was also very happy with her. 2 good reports! She did get her Mickey button (g-tube) changed to a bigger size. She is much happier now. Now we can do the changes at home since she has the right size. Callie is now up to 11lb 5oz and 23 inches long. Zak was up to 31lb 8 oz and 40 inches!! Way to go kids..
After our appointments Chris left to go to Iowa for 2 nights on business. Thankfully the kids were doing good and the nights were not bad. This weekend I was able to spend Saturday morning with one of my good friends. We went Dress shopping for Chris's sisters wedding this summer and out for coffee and girl talk. She really is an amazing person on a mission. The rest of the weekend was spent cleaning some more. Lots of Clorox wipes trying to get rid of all the germs and get ready for Callie's birthday party. Yes she will be 1 on the 11th! Our baby girl is growing up. What a journey this year has been.
Don't forget to post your comments or send us an e-mail. We always love to hear from you!
Pics from the week. Aren't they just the cutest kids!
Subscribe to:
Posts (Atom)
Posts
