Callie has been a little moody lately, I was thinking it was just her cold. I sure don't like to be sick so why would she? Come to find out it probably wasn't the cold as much as a new tooth! She got her upper left one in. Yeah Callie. So far it looks normal. We pray it will come in well and be a healthy tooth. Time will tell. She sure has been liking to be snuggled a lot, which I won't complain about.
Zak just started to clap (again) tonight. He goes in spurts where he will do certain things for a while and then he just stops. Several months later he starts up again. Out of the blue he just started to clap tonight. We were so excited. We kept telling Zak "Good Job" and he was all smiles. Hopefully it will continue tomorrow.
Wednesday, January 27, 2010
Monday, January 25, 2010
Care for Kids
Seriously, how hard is it just to get good care for your kids these days. It seems like we are always battling with someone just to get what the kids need. I know that is being a good advocate for your child, but when do people just back off and do what is best for the family. I am so sick of fighting. When you have a healthy child and only a few appointments a year it can be painful. Think of two children with medical issues. It seems like it never ends, but I will never stop the fighting as long as it is for the best interest of the kids.
It started with Zak around 4 months old - trying to get his stomach figured out, which later was Acid Reflux. It was months of doctoring and changing until we got an answer. Three doctors later we had it figured out. Then his neck - which was even a bigger episode since we were up against time and all we got was the run around. Then it was Zak's Nose and ears.. Now it is Callie and her twitches. We have never got an answer from our current doctors. Just put her on a random med and see what happens. No idea what is going on just drug her. We are not OK with that. At the time anything was worth a try. 60 hours of constant screaming in pain and we were told just to watch her. If they don't know just tell us. So we made our appointment in Madison and away we went finally feeling good like we have a plan. Even if it is the wrong diagnosis and medication we had a start. (so far we have not had any more issues with twitching - knock on wood).
So after her latest diagnosis and medication change we had an appointment with our pediatrician and we gave her the update of meds letting her know what was said and her report should follow in the mail. She was uncertain if she agreed with the diagnosis but was accepting of giving the new medication a try. Well honestly what am I suppose to say. I am not a doctor and I don't know if twitching causes headaches, but I know she is in some sort of pain and I will try anything. And headaches do make sense to me - and if not well we will continue to search for an answer. Only later to talk to several people that have had kids that start talking and are diagnosed with headaches.. don't tell me something is not possible - look at our children, anything is possible.
So today our current Neurologist got wind and I got a phone call from the nurse. Needless to say they are not happy and want us to choose where we will be getting our care from to keep all the records together. I am just fed up with the whole system. It does not matter what doctor, what clinic or what system. They all want your business. Every time we do not stay in that network it seems like questions arise why we did not see one of those doctors and are told it is hard to keep records together. Not every doctor knows everything.. that is why there are second opinions and that is why it is called Medical "practice". If we only saw doctors that know about our kids chromosome abnormality we would not be going anywhere since it is so rare - they are the only two in the world with that exact diagnosis. I love Dr. Park's theory - He always says "I will never say never. Anything can happen in Medicine." Why can't we find more doctors like him. To think he is going to retire this year or next year.. bummer!! A huge loss. I am starting to think the doctors take it as an insult when you change or go elsewhere. I don't expect them to always know everything and see it all. We continue to go to our doctors because we like they and think are of value, sometimes we just need to check elsewhere.. and sometimes just to ease our minds.
So we go in on the 2nd and we are suppose to talk things through with the doctor to see what the plan is. It should be interesting. We won't be backing down on this one. We have just had way to many issues the past year.
It started with Zak around 4 months old - trying to get his stomach figured out, which later was Acid Reflux. It was months of doctoring and changing until we got an answer. Three doctors later we had it figured out. Then his neck - which was even a bigger episode since we were up against time and all we got was the run around. Then it was Zak's Nose and ears.. Now it is Callie and her twitches. We have never got an answer from our current doctors. Just put her on a random med and see what happens. No idea what is going on just drug her. We are not OK with that. At the time anything was worth a try. 60 hours of constant screaming in pain and we were told just to watch her. If they don't know just tell us. So we made our appointment in Madison and away we went finally feeling good like we have a plan. Even if it is the wrong diagnosis and medication we had a start. (so far we have not had any more issues with twitching - knock on wood).
So after her latest diagnosis and medication change we had an appointment with our pediatrician and we gave her the update of meds letting her know what was said and her report should follow in the mail. She was uncertain if she agreed with the diagnosis but was accepting of giving the new medication a try. Well honestly what am I suppose to say. I am not a doctor and I don't know if twitching causes headaches, but I know she is in some sort of pain and I will try anything. And headaches do make sense to me - and if not well we will continue to search for an answer. Only later to talk to several people that have had kids that start talking and are diagnosed with headaches.. don't tell me something is not possible - look at our children, anything is possible.
So today our current Neurologist got wind and I got a phone call from the nurse. Needless to say they are not happy and want us to choose where we will be getting our care from to keep all the records together. I am just fed up with the whole system. It does not matter what doctor, what clinic or what system. They all want your business. Every time we do not stay in that network it seems like questions arise why we did not see one of those doctors and are told it is hard to keep records together. Not every doctor knows everything.. that is why there are second opinions and that is why it is called Medical "practice". If we only saw doctors that know about our kids chromosome abnormality we would not be going anywhere since it is so rare - they are the only two in the world with that exact diagnosis. I love Dr. Park's theory - He always says "I will never say never. Anything can happen in Medicine." Why can't we find more doctors like him. To think he is going to retire this year or next year.. bummer!! A huge loss. I am starting to think the doctors take it as an insult when you change or go elsewhere. I don't expect them to always know everything and see it all. We continue to go to our doctors because we like they and think are of value, sometimes we just need to check elsewhere.. and sometimes just to ease our minds.
So we go in on the 2nd and we are suppose to talk things through with the doctor to see what the plan is. It should be interesting. We won't be backing down on this one. We have just had way to many issues the past year.
A Night Away
Many thanks to the people that made this possible! (you know who you are.. and if you are not sure, you probably are one of those people)
Our whole house came down with a cold.. tis the season. Then the Freezing rain was suppose to come. Either way we were bound and determined it was not going to ruin a night away.. without the kids. Yes you read that right. This is the first time since Zak was been born, and even longer than that, that Chris and I went out without kids for a whole night. Every time we had the ability prior (meaning Chris's parents watched Zak) we just went home and to bed! We anxiously awaited for the weekend to finally come. We had our team of nurses at home taking care of the kids. We went to see Avatar in 3D, It was a great movie. I highly recommend it in 3D, it added so much more. Either way it is worth seeing. Then we checked into a local hotel and relaxed for a bit and went shopping and off to dinner. We were able to take our time knowing we did not need to answer to anyone for the night. Of course we did need to call and check in on the kids. We were able to just sit in the hot tub at the hotel and chill out! Sunday we slept in and watched a little TV and then went out to breakfast! It was so nice just to get away and just spend time together alone. Although I was defiantly ready to see the kids, snuggle and play all day.
Sunday was spent Chasing after Zak's toys.. his box of balls. I got a delivery Sat morning from diapers.com. I figured Zak would like to play in the box. Then I realized I still had a bag of balls so I put them in the box. Zak had fun playing in there until he realized that it was more fun to dump it over and have Mom pick up 100 balls all over the floor. He would just laugh. Then I would laugh. Needless to say it was a mess, but we had fun!
Callie spent her time practicing on Standing and sitting. She sure is doing well. She makes it known when she would rather stand by not letting you bend her to sit. It is so cute!
Our whole house came down with a cold.. tis the season. Then the Freezing rain was suppose to come. Either way we were bound and determined it was not going to ruin a night away.. without the kids. Yes you read that right. This is the first time since Zak was been born, and even longer than that, that Chris and I went out without kids for a whole night. Every time we had the ability prior (meaning Chris's parents watched Zak) we just went home and to bed! We anxiously awaited for the weekend to finally come. We had our team of nurses at home taking care of the kids. We went to see Avatar in 3D, It was a great movie. I highly recommend it in 3D, it added so much more. Either way it is worth seeing. Then we checked into a local hotel and relaxed for a bit and went shopping and off to dinner. We were able to take our time knowing we did not need to answer to anyone for the night. Of course we did need to call and check in on the kids. We were able to just sit in the hot tub at the hotel and chill out! Sunday we slept in and watched a little TV and then went out to breakfast! It was so nice just to get away and just spend time together alone. Although I was defiantly ready to see the kids, snuggle and play all day.
Sunday was spent Chasing after Zak's toys.. his box of balls. I got a delivery Sat morning from diapers.com. I figured Zak would like to play in the box. Then I realized I still had a bag of balls so I put them in the box. Zak had fun playing in there until he realized that it was more fun to dump it over and have Mom pick up 100 balls all over the floor. He would just laugh. Then I would laugh. Needless to say it was a mess, but we had fun!
Callie spent her time practicing on Standing and sitting. She sure is doing well. She makes it known when she would rather stand by not letting you bend her to sit. It is so cute!
Monday, January 18, 2010
Time out having fun!
It has been a long time since I wrote. Wow how time flies! Thankfully it has been fairly uneventful with the kids. We had Zak's IEP (Individual Education Plan) meeting with his teacher and therapists. We are planning for Kindergarten! He is getting to be such a big boy. We are not going to be sending to our home school as there is another school in the Wausau school district that will have a program more geared towards his learning and they have more therapists available for him. Callie has also been doing well. We have been working on lots of sitting and standing with her. She is so close to sitting on her own. She is a strong little girl.
Two weeks ago Zak and I were able to meet an Amazing family! Lori, Dan, Avrianna and Danny. Unfortunately Chris and Callie were not feeling the best so they stayed home. This past summer we went to see there house since it was in the Parade of Homes in Appleton. It is an amazing Home.. all handicap accessible. It gave us some great ideas since reality is our house will just not work with Zak long term, which means probably not Callie either. Everyone that has been here knows how wonderful all of our steps are and it just gets harder the bigger Zak gets. Anyways, we gave the builder our name and he passed it onto Lori. We have stayed in touch since. The whole family was up to Wausau for a swim meet for Avrianna and we finally met! They are a great family with hearts of gold. It was like we have known each other for years.
Also Chris and I found a little time to our self. The snowmobile trails in our county finally opened. After 3 years we finally went out again! It was so much fun just to get out and do something we wanted. I loved it.. until it set in that it was Sunday and we were not home with the kids. Then it was time to go back in.. and the Packers were on too. Now I want to go out again, hopefully we can since Chris put a lot of time and work into get them all ready.
Cousin Angie went back to school this past weekend after her winter break home from school. She was able to spend a lot of time hanging out at our house with the kids.. and us too! We love having her over. She even slept over a few times - we stayed up late playing wii while the kids were sleeping. Just like being a kid again.
Two weeks ago Zak and I were able to meet an Amazing family! Lori, Dan, Avrianna and Danny. Unfortunately Chris and Callie were not feeling the best so they stayed home. This past summer we went to see there house since it was in the Parade of Homes in Appleton. It is an amazing Home.. all handicap accessible. It gave us some great ideas since reality is our house will just not work with Zak long term, which means probably not Callie either. Everyone that has been here knows how wonderful all of our steps are and it just gets harder the bigger Zak gets. Anyways, we gave the builder our name and he passed it onto Lori. We have stayed in touch since. The whole family was up to Wausau for a swim meet for Avrianna and we finally met! They are a great family with hearts of gold. It was like we have known each other for years.
Also Chris and I found a little time to our self. The snowmobile trails in our county finally opened. After 3 years we finally went out again! It was so much fun just to get out and do something we wanted. I loved it.. until it set in that it was Sunday and we were not home with the kids. Then it was time to go back in.. and the Packers were on too. Now I want to go out again, hopefully we can since Chris put a lot of time and work into get them all ready.
Cousin Angie went back to school this past weekend after her winter break home from school. She was able to spend a lot of time hanging out at our house with the kids.. and us too! We love having her over. She even slept over a few times - we stayed up late playing wii while the kids were sleeping. Just like being a kid again.
Thursday, January 7, 2010
Trip to Madison
We went to Madison yesterday for Callie to see a new neurologist. We were thinking her twitching had got better until the 30th. They started back up and did not stop for 3 days. It was a good thing we still had the anointment. The doctor does not believe they are seizures which was great to hear. He is thinking she may have headaches or even migraines. He gave us a new medication to try. It will take a few weeks before it starts to work, but hopefully it will do the trick. Time will tell.
Zak has been doing good. Back to school after being off for a few weeks. Tuesday he slept all day and by Wednesday night he was all caught up he did not sleep last night but 2 hours.
Zak has been doing good. Back to school after being off for a few weeks. Tuesday he slept all day and by Wednesday night he was all caught up he did not sleep last night but 2 hours.
Can you find Callie??
Zak Sleeping the day away.. isn't he so cute on the couch?
Zak helping open gifts.
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