Taken at Wendy's on our way to St. Paul for Grace's February check up at the Minnesota Epilepsy Group.
Sunday, February 18, 2007
Wednesday, January 31, 2007
Is one still a baby?
Kevin and I have been wondering if when you are one are you still considered a baby? As we looked at her at the time of her birth (one year later) we were speechless - she is nothing that we expected and everything that we love. I have to admit that her turning one has been very difficult for me -- that I will continue to grieve as milestones pass is a harsh reality sometimes-- other times I think I'm crazy to grieve -- she is wonderful! She was actually a little under the weather on her birthday, but happily we are going to try and celebrate at a later time with cousin Nathan. Tomorrow we go to get her one year pictures taken -- we will share them with you I promise! She is a beautiful little girl - great cheeks... at work they look at her pictures and talk about how you could just pinch them! If she would only weigh 20 pounds I could turn around her car seat -- I am seriously looking forward to that.
Daycare is going well. This is her last week with Grandpa - but of course he'll always be able to pinch-hit! Thank you all for checking in, we most definitely appreciate it.
Daycare is going well. This is her last week with Grandpa - but of course he'll always be able to pinch-hit! Thank you all for checking in, we most definitely appreciate it.
Monday, January 15, 2007
Cardio Workout
Went to the Cardiologist today, they ran an EKG, an X-ray, and an Ultrasound and no murmur can be detected! We don't have to go back to the Cardiologist!
Grace has a cold, but the nice thing it's just the ordinary run of the mill cold, it took us some time to figure out how to handle a normal person sickness. She is sleeping alot and hopefully will return to herself in another day or so.
Grace has a cold, but the nice thing it's just the ordinary run of the mill cold, it took us some time to figure out how to handle a normal person sickness. She is sleeping alot and hopefully will return to herself in another day or so.
Tuesday, January 09, 2007
We've got a long way to go and a short time to get there
Made it to Story City last night thanks in part to about 3 gallons of caffeinated Pepsi products, Fareway Ham Salad and Jalapeno Pringles (I don't recommend).
We stayed the night at the Comfort Inn and hit the road again at 6:30 this morning. Joy went to work, Grace went to daycare, Hoover came home from the Kennel and Kevin will go to work tonight.
Grace will get her 6 month immunizations today and along with her "mickey" button for her G-tube.
We stayed the night at the Comfort Inn and hit the road again at 6:30 this morning. Joy went to work, Grace went to daycare, Hoover came home from the Kennel and Kevin will go to work tonight.
Grace will get her 6 month immunizations today and along with her "mickey" button for her G-tube.
Monday, January 08, 2007
First EEG of the New Year!
We are in St. Paul right now we came back for a followup appointment. We have some good news! Grace's EEG is showing more organization in the brain waves, in November she was showing just a little organization in the waves. The nigth terrors she si having are not seizures as we feared. We are going to continue on with the Felbetol and push it a little higher, we will closely monitor her levels in the coming month. We will come back to St. Paul for another followup in February, if we see continued improvement we will keep on going, if we don't we will look towards another treatment either a drug therapy or the ketogenic diet.
We are on the Pediatric Epilepsy Unit at Children's visiting Grant and his mom Jannelle who to our church and they are also the ones that gave Hoover to us. We should be taking off shortly for the drive home.
We are on the Pediatric Epilepsy Unit at Children's visiting Grant and his mom Jannelle who to our church and they are also the ones that gave Hoover to us. We should be taking off shortly for the drive home.
Friday, December 29, 2006
Early Christmas Present
As you can see from the previous post, Grace went to daycare. We got a call last Thursday the 22nd and were told that Grace was one of 50 people approved for funding through Polk County to help out with Day Care for Exceptional Children's cost! This was a huge early Christmas present! When I say huge I mean really really really big and overwhelming. We were told that we would not get funding until 2008 if we were lucky do to some squandering of funds and political bureaucracy, imagine that. Grace will go back for two days this coming week and we will do that for a couple weeks and then see where we will go from there.
Wednesday, December 27, 2006
Hanging out with Friends
Well, we are all feeling better. Grace made it through her first Christmas. It was actually pretty quiet on Christmas day... we went to the local Chinese buffet for Christmas dinner.... it was packed! Grace fell asleep while we were there so obviously it wasn't too exciting -- but it was nice just to be the three of us. (four counting Hoover--- but he of course didn't go to the restaurant with us).
Grace also made it through her first day of Daycare for Exceptional Children. I was perhaps more overwelmed then she at the prospect of this, but her teachers loved her... and she was kept very busy. We are hoping this will help her sleep tonight, she has been waking up at 4 ready to go.... ugh!
On her report card it says she spent 1/2 hour "hanging out with friends" -- how cool is that she no longer has just us.... she has friends!
Grace also made it through her first day of Daycare for Exceptional Children. I was perhaps more overwelmed then she at the prospect of this, but her teachers loved her... and she was kept very busy. We are hoping this will help her sleep tonight, she has been waking up at 4 ready to go.... ugh!
On her report card it says she spent 1/2 hour "hanging out with friends" -- how cool is that she no longer has just us.... she has friends!
Tuesday, December 12, 2006
Kevin
Grace is still in the hospital, they tried some formula last night and she began throwing up again around 4 am. I got sick last night as I was gathering things to take back to the hospital -- and continue to struggle.
Kevin is holding down the fort for Grace and myself. And he is doing really well at it. Please keep him in your prayers... for strength, patience -- and health!
PS -- If anyone wants to go to Blank and give him an hour off -- I'm sure he'd appreciate it.
Kevin is holding down the fort for Grace and myself. And he is doing really well at it. Please keep him in your prayers... for strength, patience -- and health!
PS -- If anyone wants to go to Blank and give him an hour off -- I'm sure he'd appreciate it.
Monday, December 11, 2006
the ER
Grace was in the ER again yesterday morning.... she began throwing up late Saturday afternoon and was keeping nothing down. They admitted her to the hospital yesterday afternoon to make sure they could get some fluids in her and so they could give her medications by IV until we figure out what is going on. This is somewhat discouraging.... two ER visits in 8 days... but I'd much prefer she be there, because there is nothing scarier than watching her turn purple trying to vomit..... what a cheerful message for so early in the morning! Anyhow Kevin is with her now and I am rounding up some things to be able to get back to them. Think good thoughts!
Monday, December 04, 2006
Grateful for the little things
It's been such a mixed bag the last few days....
Grace is producing steroids as she should... she is free and so are we,
but --- the thyroid came back abnormal, this is responsible for growth and will require another blood test on Thursday.
A trip to the ER for a "normal" baby problem leads to further tests, there is the possibility that Grace could have "reflux of the kidneys"...
we are stymied by having to make a decision about daycare... it was scary the first time to make a decision, but now I am honestly petrified about where we should put her - how we will pay for "specialized" care - and if anyone but my dad is "good" enough to take care of my baby.
But... we can take her to see Santa --- and she is able to put weight on her feet longer, and Kevin called me this morning all excited because she was giving him little half smiles and making great noises. I wanted to come home. That's enough of a good thing for today---- we can keep going tomorrow.
Grace is producing steroids as she should... she is free and so are we,
but --- the thyroid came back abnormal, this is responsible for growth and will require another blood test on Thursday.
A trip to the ER for a "normal" baby problem leads to further tests, there is the possibility that Grace could have "reflux of the kidneys"...
we are stymied by having to make a decision about daycare... it was scary the first time to make a decision, but now I am honestly petrified about where we should put her - how we will pay for "specialized" care - and if anyone but my dad is "good" enough to take care of my baby.
But... we can take her to see Santa --- and she is able to put weight on her feet longer, and Kevin called me this morning all excited because she was giving him little half smiles and making great noises. I wanted to come home. That's enough of a good thing for today---- we can keep going tomorrow.
Saturday, December 02, 2006
Out and about
Today we went shopping as a family, it's been a really long time since we have does this. Naturally Grace slept through the entire experience. We were really looking forward to her being awake and taking everything in. But we are all really tired from last night.
ER Sleep Deprivation
We visited Blank ER tonight/this morning. Grace has been vomiting her formula, baby food and medicine. This was sporadic but starting to get more frequent. Tonight she threw up a large amount of formula and all of her meds. We re-dosed one med and within minutes is was back up and she was gagging and grasping for air. We called Dr. Slovan the GI on-call and after discussing the issue he felt that the G-tube may have moved, etc so he wanted us to go in.
They took X-rays but everything looked fine. They ran a but of blood tests, levels on all of her meds and several others. Turned out she has a urinary tract infection. This doesn't have anything really to do with her immune system it is just one of those things and apparently vomiting is something that comes along with it. They gave Grace a shot and a script for an antibiotic. We will see how she does.
Grace had several seizures, two while in the ER, they were harder than normal but she was never able to keep her evening doses of meds down. It will be interested seeing how her seizures react if we can get the vomiting under control and she can keep her meds down again.
They took X-rays but everything looked fine. They ran a but of blood tests, levels on all of her meds and several others. Turned out she has a urinary tract infection. This doesn't have anything really to do with her immune system it is just one of those things and apparently vomiting is something that comes along with it. They gave Grace a shot and a script for an antibiotic. We will see how she does.
Grace had several seizures, two while in the ER, they were harder than normal but she was never able to keep her evening doses of meds down. It will be interested seeing how her seizures react if we can get the vomiting under control and she can keep her meds down again.
Friday, December 01, 2006
Hello World...
We got the result back from the blood tests Grace had on Wednesday. Her body is producing the steroids it should be and her immune system is back to normal! So we can immediately rejoin society and see the world!
We were not expecting the results this quickly but we are not complaining...Grace has been vomiting and the GI doctors wanted to make sure everything was OK with her adrenal levels so they ask Dr. Cook to make the lab run the tests today.
Dr. Cook is our Endocrinologist and she has said that we shouldn't go all crazy as Grace has not been exposed to much so even though her immune system is back she has no tolerance against any sickness, etc.
We were not expecting the results this quickly but we are not complaining...Grace has been vomiting and the GI doctors wanted to make sure everything was OK with her adrenal levels so they ask Dr. Cook to make the lab run the tests today.
Dr. Cook is our Endocrinologist and she has said that we shouldn't go all crazy as Grace has not been exposed to much so even though her immune system is back she has no tolerance against any sickness, etc.
Wednesday, November 29, 2006
Steroid Test
Today Grace went in for a test to determine if her body is producing enough steroids so that her immune system is back to normal. They had to draw blood from her every 15 minutes for an hour. The results will take a week.
Wednesday, November 22, 2006
Sleep Spindles & Organization
We had our followup appointment on Nov 20 with Dr. Doescher at the Minnesota Epilepsy Group in St. Paul, we had an EEG and then met with the doctor. We got some good news!
They were able to detect sleep spindles in Grace's EEG while she slept, this was something that was not present before and would be seen in a normal EEG. They also were able to see a little more organization in her brainwaves during awake time. So they believe that the new medicine, Febetol is starting to work! We increased it on Monday and will most likely increase it again on Friday, it will all depend on seizure control, we are still have a couple a day.
We will go back to St. Paul on Jan 8 for our next followup, we hope that there will even be more good news to follow!
They were able to detect sleep spindles in Grace's EEG while she slept, this was something that was not present before and would be seen in a normal EEG. They also were able to see a little more organization in her brainwaves during awake time. So they believe that the new medicine, Febetol is starting to work! We increased it on Monday and will most likely increase it again on Friday, it will all depend on seizure control, we are still have a couple a day.
We will go back to St. Paul on Jan 8 for our next followup, we hope that there will even be more good news to follow!
Custodial Care
We got tuned down about a two weeks ago for nursing care for Grace. It's really annoying when multiple doctors say with confidence, she gets a G-tube and you will get nursing hours the next day. We were denied because Grace's care is considered custodial, but then again any infant care really is custodial.
Fortunately Dale is in for the long haul, which we may need.
Hopefully they new state legislature will get to work right away and spent part of the 300 million surplus on programs we need and not giving tax breaks! If they could just clean up the waiting list for the waiver program (Medicare) we would be able to get funding for some additional services that will be crucial as Grace gets older. If you have some free time please feel free to write your state senator or representative (http://www.legis.state.ia.us/FindLeg/). Currently we are on a 12 to 18 month waiting list for the ill and handicap waiver and at least a 24 month for the brain injury waiver. We ultimately want to get on the brain injury waiver as this will provide some specialized services for Grace's condition.
Fortunately Dale is in for the long haul, which we may need.
Hopefully they new state legislature will get to work right away and spent part of the 300 million surplus on programs we need and not giving tax breaks! If they could just clean up the waiting list for the waiver program (Medicare) we would be able to get funding for some additional services that will be crucial as Grace gets older. If you have some free time please feel free to write your state senator or representative (http://www.legis.state.ia.us/FindLeg/). Currently we are on a 12 to 18 month waiting list for the ill and handicap waiver and at least a 24 month for the brain injury waiver. We ultimately want to get on the brain injury waiver as this will provide some specialized services for Grace's condition.
Thursday, November 16, 2006
Mall, Menards, Target, Fareway -- Oh the Places We'll Go!
Grace is crying in her crib behind me, still wide awake and 10:25 pm. The medicine she is on really makes her wired! I'll have to rock her soon... this parenting for sleep thing is extremely complicated and we never know if we are doing the right thing.
Grace had two clusters of seizures today both around 4 minutes... we had been in the 8 to 10 minute range so this has been a relief. We leave for St. Paul Sunday afternoon, her appt. with the epileptologist is at 2 and there is an EEG scheduled for noon.
She has yet to spike a fever or throw up a lot so I am hopeful that we will really be able to go off of the steroids. I heard Kevin talking to her this morning about all the places he wants to take her once she is able to join the world. I have been thinking about that a lot as well. (Heather and Drue we are coming to see you!)
Grace is continuing to become stronger, more active, seems to be figuring some things out. this sleep thing right now is HUGE though. We have stopped bottle feeding as it upsets her way too much. My motherly instinct is to feed --- and while I would love to have that time holding her and having her drink out of a bottle, it's not pleasant for her or for me.
I never knew that parenting could make you feel so helpless. But I think that Kevin and I are being very strong....
Joy
Grace had two clusters of seizures today both around 4 minutes... we had been in the 8 to 10 minute range so this has been a relief. We leave for St. Paul Sunday afternoon, her appt. with the epileptologist is at 2 and there is an EEG scheduled for noon.
She has yet to spike a fever or throw up a lot so I am hopeful that we will really be able to go off of the steroids. I heard Kevin talking to her this morning about all the places he wants to take her once she is able to join the world. I have been thinking about that a lot as well. (Heather and Drue we are coming to see you!)
Grace is continuing to become stronger, more active, seems to be figuring some things out. this sleep thing right now is HUGE though. We have stopped bottle feeding as it upsets her way too much. My motherly instinct is to feed --- and while I would love to have that time holding her and having her drink out of a bottle, it's not pleasant for her or for me.
I never knew that parenting could make you feel so helpless. But I think that Kevin and I are being very strong....
Joy
Tuesday, November 07, 2006
Daycare for Exceptional Children --- Here's Gracie!
We saw both Dr. Kabbani today and Dr. Cook. Both were amazing.
Dr. Cook wants us to take Grace off the steroids as of today -- then in three weeks we'll go in for a test to make sure that her body is producing the steroids that it should. If all goes well Grace (and us) will be able to join the world in three weeks. I have to be honest -- I am cautiously optimistic about this. I don't want to be disappointed -- I don't know that I could take that.
Dr. Kabbani let us know that Grace's EEG continues to look the same - no worse but no better. This is amazing to us because she is doing such wonderful things. Playing, crying, standing on her own two feet (with assistance) - she is very close to sitting all by herself, she babbles, she plays and reaches for things. We were hoping this meant good things (like an improving EEG). Kevin called and I followed up with the Minnesota Epilepsy Group today-- we are increasing the med dosage again.
Today my heart is sad for her, and for her future, but I hear her now playing with the bird on the mirror -- talking-- and when I turn around her little self is in snowman pajamas with feet -- and I feel small rays of hope.
Joy
Dr. Cook wants us to take Grace off the steroids as of today -- then in three weeks we'll go in for a test to make sure that her body is producing the steroids that it should. If all goes well Grace (and us) will be able to join the world in three weeks. I have to be honest -- I am cautiously optimistic about this. I don't want to be disappointed -- I don't know that I could take that.
Dr. Kabbani let us know that Grace's EEG continues to look the same - no worse but no better. This is amazing to us because she is doing such wonderful things. Playing, crying, standing on her own two feet (with assistance) - she is very close to sitting all by herself, she babbles, she plays and reaches for things. We were hoping this meant good things (like an improving EEG). Kevin called and I followed up with the Minnesota Epilepsy Group today-- we are increasing the med dosage again.
Today my heart is sad for her, and for her future, but I hear her now playing with the bird on the mirror -- talking-- and when I turn around her little self is in snowman pajamas with feet -- and I feel small rays of hope.
Joy
Sunday, October 29, 2006
Amazing Grace
I forgot to mention yesterday that Kevin and I were able to get out last night and go see Chris Tomlin.... because Suzanne decided that she would share her mom with us. Thank you Suz.
Saturday, October 28, 2006
Home Sweet Home
We have been home for almost a week now. Grace's medications have been changed slightly as the seizures continue, she still has not had more than 2 clusters of seizures a day, a couple of days none and some days one. We are thinking that ultimately we will end up having to give the Ketogenic diet a try. We are set to return to St. Paul for the day on November 20 to meet with Grace's epileptologist and she will have an EEG while we are there.
The new medication she is on keeps her wide awake... we have a had a few really late nights and both of us are tired. We are adapting to the G-tube, but Grace seems to have embraced it fully! Our OT says that Grace is quite smart and has learned that it is easier to be fed through the tube then to work the whole sucking thing out when presented with the bottle. This bugs me... I'm not sure what to do about it yet but I'm looking at some options and making some calls!
Kevin is working this weekend and I am trying to get things in order here. We have a busy couple of weeks ahead of us which is quite daunting to think about so we are trying to be as organized as possible. We have quite a few doctor's appointments for Grace here, I have several work deadlines, we'll be headed to Kevin's parents, and I think that's it, but, it is enough!
There is a possibility that we will have home health nursing set up towards the end of next week, which means that Dad would no longer be so "scheduled" in his well earned retirement. We have recieved many gifts and blessings but the gift of his time, my mom's willingness to share him, and his willingness to deal with things outside of his comfort level is amazing and beyond belief. I don't really know how we'll explain that to Grace someday.....
I normally leave this blog to Kevin -- but several people have asked so I thought I'd include my thoughts.
Joy
The new medication she is on keeps her wide awake... we have a had a few really late nights and both of us are tired. We are adapting to the G-tube, but Grace seems to have embraced it fully! Our OT says that Grace is quite smart and has learned that it is easier to be fed through the tube then to work the whole sucking thing out when presented with the bottle. This bugs me... I'm not sure what to do about it yet but I'm looking at some options and making some calls!
Kevin is working this weekend and I am trying to get things in order here. We have a busy couple of weeks ahead of us which is quite daunting to think about so we are trying to be as organized as possible. We have quite a few doctor's appointments for Grace here, I have several work deadlines, we'll be headed to Kevin's parents, and I think that's it, but, it is enough!
There is a possibility that we will have home health nursing set up towards the end of next week, which means that Dad would no longer be so "scheduled" in his well earned retirement. We have recieved many gifts and blessings but the gift of his time, my mom's willingness to share him, and his willingness to deal with things outside of his comfort level is amazing and beyond belief. I don't really know how we'll explain that to Grace someday.....
I normally leave this blog to Kevin -- but several people have asked so I thought I'd include my thoughts.
Joy
Subscribe to:
Posts (Atom)