I haven't posted for a while, which generally means something good! :) Or that I'm busy. In this case, it means both. :)
Robynson has been being pretty good / normal for herself. We've been doing as much as we can to keep her away from sick friends / family. We've avoided most social situations to avoid the random kid who is there who happens to either be sick or a carrier for something that would bring her down and land her at a holiday stay in the hospital.
She has gotten a light flu and strep throat since I posted last. Luckily, the strep throat seemed to be caught early on and she is currently on meds for that. The flu was really light for her and didn't seem to affect her breathing or anything like that so we have been REALLY lucky!
Robyn had a doctor appointment yesterday morning and wouldn't you know it - I was sick. I got sick on the way to the appointment, so instead of going along to see everything first hand, I slept on Jeremiah's sisters couch while Jeremiah got to be there and comfort her and be her buddy. I think they both sort of liked it that way. :)
Jeremiah reported that the doctor told him that Robynson is doing great. They was very pleased to see the progress that her little heart was making. So pleased, in fact, that Robyn was taken off of Levocarnitine (which was the most expensive, biggest dose, twice a day medicine) and she was also taken off of her baby aspirin. Which means we are now down to 4 meds in the morning and 2 at night (well, plus her amoxicilian for strep throat, but that won't be very much longer now). Jeremiah didn't ask about her EF for her heart, but the doctor seemed really happy about the results, so we take it as she's getting better. :) YAY!!!
Robyn needs to go in for labs in about a month to see how her blood is without the Levocarnitine, but if she still looks good, she won't have an appointment until FEBRUARY!!!! Hooray! So, in the mean time, just remember that God is great, Love your neighbor and Life is Good. :)
PS. I will be doing a post over at the family blog (www.mandyandmiah.blogspot.com) about her birthday in the next few days hopefully... Its just been REALLY busy these last few weeks and when I did have time to do it, I couldn't find the cord to download the pictures to the computer. But it was lots of fun. :) Loves!
Thursday, December 3, 2009
Wednesday, December 2, 2009
More coming tomorrow
Robyn had a Dr appointment today, but I'm too tired to write about it. SO know that it was good and I'll write tomorrow. :)
Friday, October 16, 2009
Doctor's Appointment
Yesterday Robynson had another doctor's appointment complete with an Echo and blood work. Poor little thing!
We started out the day at Grandma Barlow's house in Heber because it's closer than Provo and because I know the way to the hospital better from that direction. Jeremiah couldn't come with us this time because he needs to work when he can - since he's probably getting laid off today (yeah, I know, WONDERFUL)...
We got to the hospital a little early and met with the nurse. Robyn had her vitals taken. She's normal on her blood pressure and her weight is up a little (and by little, I mean 0.1 kg). :) Then we were off to the Echo. The Echo took longer than normal (about 45 minutes!) because they saw something that was unusual. When I asked about it after they RE-checked her, the Ultrasound Tech said that it was just the angle and the Robynson is still fine (well, fine for her). Nothing new to worry about, I guess! :)
After her Echo, we met with her doctor (Doctor Everett). She said that Robyn's numbers were a little down, but that her heart looked more like it should (which is good). She said that she didn't want us to think that she's better, but that she is, in fact, slowly getting better. We're not out of the woods on this but that the medicines seem to be helping her heart to go back to the right shape (instead of a balloon, she starting to look more like a pear, which is good). Dr. Everett said that she was pleased with how it was going - even though she'd like it to go faster! :) (Yeah, us too!)
Dr. Everett wanted to monitor Robyn's heart during her 'normal' daily routine. So, Robyn has a portable heart monitor (called a Holter ECG) on for a total of 24 hours. I was worried that she would be picking at the 'stickers' and pulling out the wires, but she's barely noticed it (which has been awesome!) I've kept her in a onsie and the only time she really seemed to notice it was when I changed her onsie this morning and took pictures (see below). :) Anyway, back to the visit...
Then we met with the Cardiology Department's Social Worker (who was really great). She helped me to get the information I need to apply for Hospital Financial Aid, talked about other options, helped me with asking the right questions to my Medicaid worker, etc. So, I ran around the hospital with her trying to get all of that done before we did Robyn's lab work.
Robynson hates lab work (I really don't blame her at all - I don't like needles and blood and all that either)... So when we went in the rooms and sat in the 'special chair', she seemed to recognize it because she started crying. They put the blue band on her arm and looked at her viens... They tried her right arm first (and by THEY I mean the girl doing it had to call in another person because even with me and the lady with the needle, we couldn't hold Robyn still enough to get the needle in!) So with 3 of us holding Robyn, we finally got the needle in and the blood drawn from her LEFT arm. She cried until she was so exhausted that she couldn't stay awake and fell asleep while I finished the visit... Poor thing. I hate that part the most (and so does she). That's when I really wish that Jeremiah could have came with us.
After labs, we ran back to the Cardiology desk to schedule her next appointment. Dr. Everett said that she was doing well enough that she wouldn't need to come back for 2 months! But the next available appointment CLOSE to that date was December 2nd. :) I told Dr. Everett that Robyn had labs done after the Holter ECG was put on, so that it will probably show signs of stress. She said to make sure that I make a note of it in Robyn's "activity journal" so that they know what happened to make her heart freak out. :)
We grabbed some baby asprin, met with our Medicaid Case Worker, grabbed even MORE paperwork and headed back to Heber to pick up the brothers.
All in all, it was a LONG appointment - with no Jeremiah - that went relatively well until labs. She seems to be doing well enough and her medicines don't need to be adjusted yet. We have our next appointment on December 2nd, but until then we just need to all find somewhere and get our flu shots; avoid sick people (so don't come over if you or anyone in your family is sick) and keep washing all our toys as often as we can. If you come over to our house, please know that I am the Hand Washing Nazi! Don't take it personal! :)
As always, thank you all SO MUCH for your love, thoughts and prayers. I am so appreciative to have such wonderful people in my life and in the lives of my family. Bless you all.
We started out the day at Grandma Barlow's house in Heber because it's closer than Provo and because I know the way to the hospital better from that direction. Jeremiah couldn't come with us this time because he needs to work when he can - since he's probably getting laid off today (yeah, I know, WONDERFUL)...
We got to the hospital a little early and met with the nurse. Robyn had her vitals taken. She's normal on her blood pressure and her weight is up a little (and by little, I mean 0.1 kg). :) Then we were off to the Echo. The Echo took longer than normal (about 45 minutes!) because they saw something that was unusual. When I asked about it after they RE-checked her, the Ultrasound Tech said that it was just the angle and the Robynson is still fine (well, fine for her). Nothing new to worry about, I guess! :)
After her Echo, we met with her doctor (Doctor Everett). She said that Robyn's numbers were a little down, but that her heart looked more like it should (which is good). She said that she didn't want us to think that she's better, but that she is, in fact, slowly getting better. We're not out of the woods on this but that the medicines seem to be helping her heart to go back to the right shape (instead of a balloon, she starting to look more like a pear, which is good). Dr. Everett said that she was pleased with how it was going - even though she'd like it to go faster! :) (Yeah, us too!)
Dr. Everett wanted to monitor Robyn's heart during her 'normal' daily routine. So, Robyn has a portable heart monitor (called a Holter ECG) on for a total of 24 hours. I was worried that she would be picking at the 'stickers' and pulling out the wires, but she's barely noticed it (which has been awesome!) I've kept her in a onsie and the only time she really seemed to notice it was when I changed her onsie this morning and took pictures (see below). :) Anyway, back to the visit...
Then we met with the Cardiology Department's Social Worker (who was really great). She helped me to get the information I need to apply for Hospital Financial Aid, talked about other options, helped me with asking the right questions to my Medicaid worker, etc. So, I ran around the hospital with her trying to get all of that done before we did Robyn's lab work.Robynson hates lab work (I really don't blame her at all - I don't like needles and blood and all that either)... So when we went in the rooms and sat in the 'special chair', she seemed to recognize it because she started crying. They put the blue band on her arm and looked at her viens... They tried her right arm first (and by THEY I mean the girl doing it had to call in another person because even with me and the lady with the needle, we couldn't hold Robyn still enough to get the needle in!) So with 3 of us holding Robyn, we finally got the needle in and the blood drawn from her LEFT arm. She cried until she was so exhausted that she couldn't stay awake and fell asleep while I finished the visit... Poor thing. I hate that part the most (and so does she). That's when I really wish that Jeremiah could have came with us.
After labs, we ran back to the Cardiology desk to schedule her next appointment. Dr. Everett said that she was doing well enough that she wouldn't need to come back for 2 months! But the next available appointment CLOSE to that date was December 2nd. :) I told Dr. Everett that Robyn had labs done after the Holter ECG was put on, so that it will probably show signs of stress. She said to make sure that I make a note of it in Robyn's "activity journal" so that they know what happened to make her heart freak out. :)
We grabbed some baby asprin, met with our Medicaid Case Worker, grabbed even MORE paperwork and headed back to Heber to pick up the brothers.
All in all, it was a LONG appointment - with no Jeremiah - that went relatively well until labs. She seems to be doing well enough and her medicines don't need to be adjusted yet. We have our next appointment on December 2nd, but until then we just need to all find somewhere and get our flu shots; avoid sick people (so don't come over if you or anyone in your family is sick) and keep washing all our toys as often as we can. If you come over to our house, please know that I am the Hand Washing Nazi! Don't take it personal! :)
As always, thank you all SO MUCH for your love, thoughts and prayers. I am so appreciative to have such wonderful people in my life and in the lives of my family. Bless you all.
Thursday, October 8, 2009
I think I'm going to be sick...
Around two weeks ago, I received a letter saying that we didn't get everything in on time and that we have been denied for Medicaid. My heart sunk.
Since then, I have been calling pretty much daily. Doing the run around (press 1 for English, Press 4 for Medicaid, Press 15 million for an actual person who told you that you need someone else)... I have been able to leave messages for our case worker after going through the run around. MANY messages have been left. To what result? 2 new letters, no calls back.
Today I called in the morning and by some miracle, I actually got our case worker on the phone. I got to ask my many questions - we're talking 15 minute phone call of me talking and asking questions. I can feel my heart break, feel my eyes gather tears and resolve that I'll move forward and get through this, too - all while on the phone.
Jeremiah and I had decided that Robyn is living a normal life. That she is your normal everyday almost 2 year old girl. So, Disability Medicaid isn't really necessary. We haven't filled out that paperwork and we feel like she'll be okay. Now, it's our only hope to have $70,000+ in medical bills paid and make it NOT a pre-existing condition... My gut feeling is that it's not going to be approved because, honestly, I feel like she is your normal everyday almost 2 year old little girl. She's not living a disabled or abnormal life RIGHT NOW. She seems normal other than she spends a day or two at the doctor's office each month. That doesn't mean that someday in the future (like if we can't afford medicine or hospital visits or a heart transplant, if it comes to that) that she won't need Disability Medicaid.
We didn't want to 'take advantage of the system'. We didn't want ask for handouts that we didn't feel like we needed. And now, it's our only option that won't kill our family financially. I am all about paying back people. Payment plans are great! But when you are already struggling financially and on payment plans in every other aspect of your life, to be on payment plans for $70,000+ in addition to everything else? We would be in ruins.
So, I am moving forward. WE are moving forward. We will apply for Disability Medicaid. I will apply for every other financial assistance that Primary Children's Hospital has to offer. We will make it through this. We will survive...
Since then, I have been calling pretty much daily. Doing the run around (press 1 for English, Press 4 for Medicaid, Press 15 million for an actual person who told you that you need someone else)... I have been able to leave messages for our case worker after going through the run around. MANY messages have been left. To what result? 2 new letters, no calls back.
Today I called in the morning and by some miracle, I actually got our case worker on the phone. I got to ask my many questions - we're talking 15 minute phone call of me talking and asking questions. I can feel my heart break, feel my eyes gather tears and resolve that I'll move forward and get through this, too - all while on the phone.
Jeremiah and I had decided that Robyn is living a normal life. That she is your normal everyday almost 2 year old girl. So, Disability Medicaid isn't really necessary. We haven't filled out that paperwork and we feel like she'll be okay. Now, it's our only hope to have $70,000+ in medical bills paid and make it NOT a pre-existing condition... My gut feeling is that it's not going to be approved because, honestly, I feel like she is your normal everyday almost 2 year old little girl. She's not living a disabled or abnormal life RIGHT NOW. She seems normal other than she spends a day or two at the doctor's office each month. That doesn't mean that someday in the future (like if we can't afford medicine or hospital visits or a heart transplant, if it comes to that) that she won't need Disability Medicaid.
We didn't want to 'take advantage of the system'. We didn't want ask for handouts that we didn't feel like we needed. And now, it's our only option that won't kill our family financially. I am all about paying back people. Payment plans are great! But when you are already struggling financially and on payment plans in every other aspect of your life, to be on payment plans for $70,000+ in addition to everything else? We would be in ruins.
So, I am moving forward. WE are moving forward. We will apply for Disability Medicaid. I will apply for every other financial assistance that Primary Children's Hospital has to offer. We will make it through this. We will survive...
Tuesday, September 15, 2009
Doctor's Visit
Today's visit to Primary Children's went pretty well!
Robyn's weight is back to where it was when she was admitted there a month and 1/2 ago. Her Carvedilol dosage is as high as it will get. Her heart ejection fraction is at 36%. So, she is improving. Not as quickly as they had hoped, but it IS continuing to improve. :) She's still on 5 meds in the morning and 3 at night with an added med of 1/2 a baby aspirin each day.
She still acts like pre-hospital Robyn, so they said that we'll just continue on the same path we are on for the next month. Since her heart medicine is as high as they can go for her weight / age, there won't be an adjustment appointment. Just another check up in one month!
As always, thank you for your kind words, love and support.
Robyn's weight is back to where it was when she was admitted there a month and 1/2 ago. Her Carvedilol dosage is as high as it will get. Her heart ejection fraction is at 36%. So, she is improving. Not as quickly as they had hoped, but it IS continuing to improve. :) She's still on 5 meds in the morning and 3 at night with an added med of 1/2 a baby aspirin each day.
She still acts like pre-hospital Robyn, so they said that we'll just continue on the same path we are on for the next month. Since her heart medicine is as high as they can go for her weight / age, there won't be an adjustment appointment. Just another check up in one month!
As always, thank you for your kind words, love and support.
Tuesday, September 1, 2009
Hello from Robynson!
If you don't already know, I have a calling in Primary. I have the Primary song "Hello, Hello, Hello, Hello - we welcome you today" as a ring tone for people I know thru church (which is basically everyone in Provo). :) Also, my kids and I will go around the house singing it - changing the words to 'Clean up, Clean Up..." or "Thank You, Thank you..." or "Hungry, Feed Me..."
Anyway, so Robynson has picked up on that. It's her favorite thing to sing, dance to, listen to on the radio or my phone. Today, I was able to catch it on camera and thought I would share it with all of you to prove that she seems fine...
Anyway, so Robynson has picked up on that. It's her favorite thing to sing, dance to, listen to on the radio or my phone. Today, I was able to catch it on camera and thought I would share it with all of you to prove that she seems fine...
SEE?!!!
She really doesn't act / look sick! :)
Thank you for all of your love, prayers and support! :)
(If you are emailed this, you have to go to her site to view it... robynhardman.blogspot.com)
Thank you for all of your love, prayers and support! :)
(If you are emailed this, you have to go to her site to view it... robynhardman.blogspot.com)
Hospital Pictures
I finally downloaded some pictures from my actual camera today. There were still pictures of Robynson from when she was in the hospital. I thought I would share them here.... I posted some that were from my camera phone on our family site, but none really here...
AT UVRMC,
BEFORE LIFE FLIGHT
LIFE FLIGHT
PICU FLOOR,
PRIMARY CHILDREN'S HOSPITAL
OFF THE PICU FLOOR!,
PRIMARY CHILDREN'S HOSPITAL
GOING HOME
BEFORE LIFE FLIGHT
LIFE FLIGHT
PICU FLOOR,
PRIMARY CHILDREN'S HOSPITAL
OFF THE PICU FLOOR!,
PRIMARY CHILDREN'S HOSPITAL
GOING HOME
People have been great to us. Everyone asks how she is. Everyone offers help. I can't express my love, appreciation and relief it has been to know that people out there care for us and want to help in any way possible... :) We love you all...
Subscribe to:
Posts (Atom)