It's time for us to start school again!! We will officially start school Sept 7th. I am still a believer in not starting school until after Labor Day! I am hoping to be on a better schedule this year with the kids. I think the shock of everything with Josh has settled and homeschool can move back to the front burner.
A few months ago, when I was tucking Micayla in we were talking about school and I casually mentioned that maybe I should put them back in public school. She said, "No, Mom, why??" I said I didn't think we were doing enough. She then said, "Mom, how many 4th graders can tell you what Pulmonary Arterial Hypertension is?" Enough said. We may not have had the best academic year but they sure got a great medical education this year!!! Where is that on the standardized tests??
Anyway, Joshua started school this week!! It was a major fiasco but we got it done!! Just in case you didn't know... When you have a government agency paying for something, it doesn't always happen on the time schedule you need it to!!!!! We're not complaining, we are very thankful for Voc Rehab, but it sure can be a pain with all the paperwork and red tape.
He was enrolled in classes two weeks ago (4 of them). When we went to get his books, we found out that the college had not received payment from Voc Rehab so they dropped him from all of his classes!!! YIKES!!! Imagine our surprise at that moment.
So after many phone calls, we found out his plan had not officially been approved yet. UGH. We called everyday for a week. (Can you say squeaky wheel??)
The school told us we could enroll in classes up until they started, which was Monday, Aug 30th. Well, his plan finally got approved Monday afternoon. We went there Tuesday morning so he could sign everything. We left there and went straight to the school. Got there around 1:00pm. He started his first college class at 2:00pm. WHEW!!! We sat outside and went over his new schedule (only 3 classes) and got him re-acclimated to the campus and which buildings were where and off he went!!!
So, please pray for him to stay focused on school and get his work done, without John or I having to stay on top of him! That's my desire!!!
I'm looking forward to all of us getting back to a schedule. Yes, I actually said that, scary I know.
Hope you all have a great year!!!
Blessings to you!! I'll leave you with this... one of my new favorite quotes...
"Our greatest fear should not be of failure but of succeeding at things in life that don't really matter." ~~Francis Chan
Friday, September 3, 2010
Wednesday, August 11, 2010
Uh Oh... Look Out!!!!
Well.... the time has finally come... Joshua received his driving permit today!!! YIKES!!!!
It's been a long time coming but as we all know, the timing is just right!
John has been pushing Joshua this summer to study for his drivers license. I have never been super sure about this so I haven't said too much about it. Driving offers a whole new set of responsibilities as well as distractions so it hasn't been on the top of my priority list to put him behind the wheel of a car, much less my car!! Up until the last 6 months or so, Joshua has not been interested in getting his permit, but it's amazing what can happen when your Dad is breathing down your neck!!
So... today Alex and I took Joshua to take his test to get a permit. The first thing they do, after going over the 100 pieces of information they require you to bring, is give him the vision test. "Please read the 12 characters in row 5 Joshua." Joshua proceeds to read only 8 characters. The man kindly asks him to read the last 4. Joshua reads the 8 characters again. The man says, "you're only reading the first 8." Joshua then says "there are only 8."
UH - OH. I'm standing there wondering what is happening and thinking we're going down fast!
He asks Alex to look into his machine and see if there are 12 characters and Alex said there were. Joshua looks again and can only see 8. I'm standing there thinking... "maybe he's not supposed to drive!!" The man has me look and tell him what I see and I see 12 characters. Hmmmm.....
At this point, Joshua is getting mad, which I'm sure Alex and I are the only one's who can tell. Mad for Joshua is like most of us when we're slightly frustrated.
So, the man gives us a green form to take to our eye doctor and have him verify his prescription and answer a handful of questions about Joshua's eyes and how they will affect him driving. However, he still allowed Joshua to take the written test. So... off Josh went to take the test on their computer. Meanwhile the man tells me that you can be blind in one eye and still drive. Whew... he may make it!
We waited outside for him. When we came back in,about 20 mins later, he was finished and giving me a thumbs up as I walked towards him!!!!
Of course, we left the DMV and drove straight to the eye doc. I was not going to make him wait after that!! So... we waited at the eye doc for him to get to the green form in between patients and we were off... back to the DMV!
So..... now the practice begins!!!
Please pray that God gives us T O N S of patience and safety!!!
Way to go Josh!!! Super proud of you!!!
It's been a long time coming but as we all know, the timing is just right!
John has been pushing Joshua this summer to study for his drivers license. I have never been super sure about this so I haven't said too much about it. Driving offers a whole new set of responsibilities as well as distractions so it hasn't been on the top of my priority list to put him behind the wheel of a car, much less my car!! Up until the last 6 months or so, Joshua has not been interested in getting his permit, but it's amazing what can happen when your Dad is breathing down your neck!!
So... today Alex and I took Joshua to take his test to get a permit. The first thing they do, after going over the 100 pieces of information they require you to bring, is give him the vision test. "Please read the 12 characters in row 5 Joshua." Joshua proceeds to read only 8 characters. The man kindly asks him to read the last 4. Joshua reads the 8 characters again. The man says, "you're only reading the first 8." Joshua then says "there are only 8."
UH - OH. I'm standing there wondering what is happening and thinking we're going down fast!
He asks Alex to look into his machine and see if there are 12 characters and Alex said there were. Joshua looks again and can only see 8. I'm standing there thinking... "maybe he's not supposed to drive!!" The man has me look and tell him what I see and I see 12 characters. Hmmmm.....
At this point, Joshua is getting mad, which I'm sure Alex and I are the only one's who can tell. Mad for Joshua is like most of us when we're slightly frustrated.
So, the man gives us a green form to take to our eye doctor and have him verify his prescription and answer a handful of questions about Joshua's eyes and how they will affect him driving. However, he still allowed Joshua to take the written test. So... off Josh went to take the test on their computer. Meanwhile the man tells me that you can be blind in one eye and still drive. Whew... he may make it!
We waited outside for him. When we came back in,about 20 mins later, he was finished and giving me a thumbs up as I walked towards him!!!!
Of course, we left the DMV and drove straight to the eye doc. I was not going to make him wait after that!! So... we waited at the eye doc for him to get to the green form in between patients and we were off... back to the DMV!
So..... now the practice begins!!!
Please pray that God gives us T O N S of patience and safety!!!
Way to go Josh!!! Super proud of you!!!
Saturday, August 7, 2010
UF Visit
Well... we had our doctor visit with UF this week. I haven't posted a lot lately. Trying to enjoy our summer and relax before school starts.
Joshua is doing well. We are switching up some of his meds. We were able to switch one of his meds to only once a day, (from twice a day), and am still working on getting another one moved to once a day, from three times a day. Hopefully this will help with compliance. He really hates taking the meds so anything to help will be great.
He has been more fatigued lately. Not sure if that is from it being summer and just laziness or from something else. He tends to fall asleep just about anywhere and can fall asleep quickly regardless of what is going on in the room. He has been staying up later and such, but still getting to sleep in so I'm not sure. I'm just keeping my eye on it for now along with the doctors.
We don't have to return to the doctor for two months this time so that is always nice to have a break! We will also see his pulmonologist at our next visit as well.
Thank you for all your continued prayers for my boy!!! It's been a year hasn't it!?!?
Enjoy the rest of your summer! I hope you're staying cool!!! Heat index has been 105-115 the last few weeks. I'm done with summer!!!
Blessings to you!!!
Joshua is doing well. We are switching up some of his meds. We were able to switch one of his meds to only once a day, (from twice a day), and am still working on getting another one moved to once a day, from three times a day. Hopefully this will help with compliance. He really hates taking the meds so anything to help will be great.
He has been more fatigued lately. Not sure if that is from it being summer and just laziness or from something else. He tends to fall asleep just about anywhere and can fall asleep quickly regardless of what is going on in the room. He has been staying up later and such, but still getting to sleep in so I'm not sure. I'm just keeping my eye on it for now along with the doctors.
We don't have to return to the doctor for two months this time so that is always nice to have a break! We will also see his pulmonologist at our next visit as well.
Thank you for all your continued prayers for my boy!!! It's been a year hasn't it!?!?
Enjoy the rest of your summer! I hope you're staying cool!!! Heat index has been 105-115 the last few weeks. I'm done with summer!!!
Blessings to you!!!
Thursday, July 29, 2010
Beauty from Ashes
It seems like over the last several months, maybe the last year, things have been either on a downward slide or just stagnant. We've had many things we've had to digest and it's been a long road. Lots of appointments, job changes, etc. Most of you know what I'm talking about. Finding out your son has a rare, terminal disease is not something to digest easily or over a quick period of time.
We have had the tremendous blessing of having wonderful doctors, nurses, and social workers, a fantastic PH clinic, and insurance that has covered just about all of his medical expenses. His meds are quite expensive and we are so thankful for his insurance!
One appointment we've been having over the last 5 months, requiring many phone calls and hours and hours of waiting, is with Vocational Rehabilitation. They help people with disabilities get set up for success and transitioning to adulthood. They do everything from helping with a job search, career counseling, providing life skills, tutoring, and also helping with tuition costs, etc. We've been on a waiting list for quite some time waiting to hear what they are going to be able to do for Joshua. Each time I call I get told "it's in Tallahassee."
We were able to meet with them this week. YAY!! We found out they are going to be able to help Joshua by paying 100% of his tuition and books at any public school in Florida! John and I could barely contain our excitement! For once, this horrible disease has a benefit for Joshua! Because of this causing him to be labeled "disabled", it has now put him in this position to receive this HUGE blessing!
We are so happy for Joshua. He even said he feels like he can do this now with all the help he was told he would have from VR! They will provide a math tutor for him, (his very least favorite subject) and help him find a job, in his field, upon graduation and anything else he needs to help him reach his goals.
Thank you Lord for providing this HUGE blessing to us. We will continue to thank Him for all He is doing and will continue to do with Josh.
All of this just reminds me that we are not in control. We have choices to make, yes. But we don't have total control of what happens. I'm so thankful today. I am very happy that Joshua will not have to worry about money while he is going through school at FSCJ for his ASL degree. This will allow him to focus on his academics!! Pray he does that!!! I think he will.
It's amazing that through all the "ashes" of this last year, and all the changes Joshua has had to deal with, it feels like there is finally something beautiful from it all.
Continue to pray for a cure for PAH! I believe we might see it one day! And if you've not signed up to be an organ donor, please do so. Thank you!
We have had the tremendous blessing of having wonderful doctors, nurses, and social workers, a fantastic PH clinic, and insurance that has covered just about all of his medical expenses. His meds are quite expensive and we are so thankful for his insurance!
One appointment we've been having over the last 5 months, requiring many phone calls and hours and hours of waiting, is with Vocational Rehabilitation. They help people with disabilities get set up for success and transitioning to adulthood. They do everything from helping with a job search, career counseling, providing life skills, tutoring, and also helping with tuition costs, etc. We've been on a waiting list for quite some time waiting to hear what they are going to be able to do for Joshua. Each time I call I get told "it's in Tallahassee."
We were able to meet with them this week. YAY!! We found out they are going to be able to help Joshua by paying 100% of his tuition and books at any public school in Florida! John and I could barely contain our excitement! For once, this horrible disease has a benefit for Joshua! Because of this causing him to be labeled "disabled", it has now put him in this position to receive this HUGE blessing!
We are so happy for Joshua. He even said he feels like he can do this now with all the help he was told he would have from VR! They will provide a math tutor for him, (his very least favorite subject) and help him find a job, in his field, upon graduation and anything else he needs to help him reach his goals.
Thank you Lord for providing this HUGE blessing to us. We will continue to thank Him for all He is doing and will continue to do with Josh.
All of this just reminds me that we are not in control. We have choices to make, yes. But we don't have total control of what happens. I'm so thankful today. I am very happy that Joshua will not have to worry about money while he is going through school at FSCJ for his ASL degree. This will allow him to focus on his academics!! Pray he does that!!! I think he will.
It's amazing that through all the "ashes" of this last year, and all the changes Joshua has had to deal with, it feels like there is finally something beautiful from it all.
Continue to pray for a cure for PAH! I believe we might see it one day! And if you've not signed up to be an organ donor, please do so. Thank you!
Wednesday, July 21, 2010
Still Here
No, we haven't gone away on some wonderful month long, (or two), vacation or fallen off the face of the earth. We've just been taking it easy this summer. With all we had going on with May, we're taking one day at a time, no plan, not much structure (to the dismay of our youngest... God thought it would be funny to give me a daughter opposite of me in that area.) Please forgive me if you've been checking in here and still get the same picture each time.
Hope you all are having a great summer! We are really doing well, other than the hamster drama in our house! Who thought it would be a good idea to get TWO of them??? Hmmm.... I'll blog more about that later!
Enjoy your summer and hug your family tight!
Hope you all are having a great summer! We are really doing well, other than the hamster drama in our house! Who thought it would be a good idea to get TWO of them??? Hmmm.... I'll blog more about that later!
Enjoy your summer and hug your family tight!
Thursday, June 17, 2010
Mama and Daughter Get Away!!!!!
The beautiful Hampton Inn on the Harbor at Amelia Island!!! Beautiful!
We walked over to the marina to see the water and boats...
but we also saw this!!!!!
We named this cute little sea otter Amelia. We don't really know the gender but Micayla wanted to name it so it's a she!
We also saw this along with jumping fish! I couldn't get a pic of the fish... they were too fast, most likely running away from whatever wanted to eat them! But I was able to get a picture of this baby jelly fish.
Then we did some shopping in the historic district. It's so pretty and was just perfect for us to wander around. The hotel is right on the corner so we could walk where we went. Amelia Island hosts a shrimp festival every year and these little guys were all over. Micayla loved them so we had to take pics with them!
Then we did this...
We had a great evening... we ate at the Marina Restaurant. It was yummy.
Then we went back to our room and popped popcorn and had M&M's. We spent a couple hours having girl talk. We mainly spoke about different changes she'll experience over the next few years and how to deal with them. It's such a fun time and I just want to prepare her for the next part of growing up!!
The next morning we got ready to go SHOPPING!!
We painted our nails and headed out... gotta have pretty toes!
We saw more of these...
I told her she could choose one thing to buy. So after much shopping and deliberation... she chose this. I love it!
We saw one more of these on our way out of town after having a yummy lunch at Karibou Cafe.
I must say thank you to my Mom for making this trip possible for us. I love that she travels and accumulates lots of hotel points and doesn't mind sharing!!! Thanks MOM!!!! We love you and had a great time!!!
We walked over to the marina to see the water and boats...
but we also saw this!!!!!
We named this cute little sea otter Amelia. We don't really know the gender but Micayla wanted to name it so it's a she!
We also saw this along with jumping fish! I couldn't get a pic of the fish... they were too fast, most likely running away from whatever wanted to eat them! But I was able to get a picture of this baby jelly fish.
Then we did some shopping in the historic district. It's so pretty and was just perfect for us to wander around. The hotel is right on the corner so we could walk where we went. Amelia Island hosts a shrimp festival every year and these little guys were all over. Micayla loved them so we had to take pics with them!
Then we did this...
We had a great evening... we ate at the Marina Restaurant. It was yummy.
Then we went back to our room and popped popcorn and had M&M's. We spent a couple hours having girl talk. We mainly spoke about different changes she'll experience over the next few years and how to deal with them. It's such a fun time and I just want to prepare her for the next part of growing up!!
The next morning we got ready to go SHOPPING!!
We painted our nails and headed out... gotta have pretty toes!
We saw more of these...
I told her she could choose one thing to buy. So after much shopping and deliberation... she chose this. I love it!
We saw one more of these on our way out of town after having a yummy lunch at Karibou Cafe.
I must say thank you to my Mom for making this trip possible for us. I love that she travels and accumulates lots of hotel points and doesn't mind sharing!!! Thanks MOM!!!! We love you and had a great time!!!
Wednesday, June 2, 2010
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