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.

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...

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.

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...

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)

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

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...

Follow Up Visit, #2

Well, today's visit is what we call a "short" visit. It only lasted 2 1/2 hours instead of 5+ hours.

My Aunt Melissa, Uncle Wes and cousin Reanna took on the boys over night and to school in the morning (thank you thank you thank you). Jeremiah got to come home and work on the basement til past 10:30pm then go to work at 5:30am like normal. And I got to spend the night in SLC with Robynson at (Jeremiah's sister) Jessica and Draysen's house.

Robyn's appt was for 'between 8am-8:30am'. I got there at 8:45am because I got lost in Salt Lake. Yeah, fun. We met with our doctor (NP, actually) Michelle Cardon. She listened to Robyn, checked her out, had her weighed - all that good stuff. Robyn was FANTASTIC for all of it. :) Then we doubled her dosage of Carvedilol (which was and is the plan for the next few visits, actually). After we double her dose, Robyn has to be monitored for 2 hours - which is why the appt is so long... We enjoyed the two hours by playing in the waiting rooms, eating in the caffeteria, visiting the Gift Shop, jumping on the 'fishy' squares, and having complete strangers say how cute she is. :) Every half of an hour, we had to go back to the Cardiology department have have her blood pressure taken.

Her blood pressure was kinda low for her but still normal-ish for her age. They felt it was okay enough for her to leave with the higher dosage of medicine. Also, she has lost weigh since her last visit (and apparently since we checked in at the hospital a month ago). So we have to monitor her diet and give her MORE calories and FATTENING foods! :) She'll love that. Can we say Cookies, Pizza, Spagettios and Mac and Cheese? :) And we have to write down what she eats for at least 3 days in a row. Gotta meet with a Dietician at our next visit now too. :)

I'm a little paranoid after this visit. You ever have one of those 'impending doom' feelings? I sort of have one of those. I'm sure it's just me being my overly paranoid self... We'll continue to watch her for sweating, rapid breathing and lethargy. If those things start happening, we'll be back in SLC. I'm not taking any chances!


So what's she doing right now? Running around the house with her 2nd piece of pizza chasing her brothers and her little boyfriends, the Hartley boys. Yep. Such a sick little girl... :)

Her next appointment is September 15th. It's an Echo, Dietician, Medicine Increase, Etc. I'll keep you informed after that visit and if anything else goes on between now and then. :)

Love to you all.
Thanks for your Love and Prayers.

Flu Bug

There is a Flu Bug at our house...

...I had said this on the phone earlier and Archer asked me where the bug was and if I was going to kill it. :)

So DarTanion woke up Sunday morning around 3am-ish throwing up. He was sick until he had nothing left in his stomach. Then he went back to sleep and slept it off. I didn't think anything else of it. Last night / this morning (12:30am), Robynson started screaming. Jeremiah went in to check on her and sure enough, she had thrown up. This is generally what happens at our house. If one of us gets sick, it goes thru the rest of us and then we're fine. Well, having a baby with a 'heart problem' makes you a little more paranoid about that darn little Flu Bug...

Robynson was throwing up from 12:30am til close to 6:30am. At first it was every 15 minutes, then it went to 30 minutes. I think the longest in between was around 45 minutes. I sat up with her on the couch and she would always cough / cry because she knew it was coming. That was my warning that I had approx. 2 seconds to get her bent over the trash can... It was so sad! She just wanted a drink, so I would give her water / gaterade / sprite... Shortly after, it was in the trash can. I stayed awake most of the time with her - just watching her breathe. She stayed normal the whole time. Nothing out of the ordinary. But I just had to make sure. She kept her medicine down this morning and slept a lot this afternoon (but so did I - I mean, we were up all night!) She's been going to the bathroom pretty much normal, so I guess no need to panic...

But, I guess now that whenever she gets sick with a cold or a flu bug or whatever, I'm going to be overly paranoid... I didn't call the hospital, but I was going to. I didn't drive her to PCMC, but I was thinking about it all night. It's amazing how you can stay awake all night out of worry and just watch someone breathe...

Archer was great to play trains, watch tv and play X-Box while DarTanion was at school today. Robyn and I tried to catch up on our missed sleep... We took a couple of naps during the day and she's acted completely fine the rest of the day...

I wanted to post this - you know, just in case the doctors need to know - so that I could remember things. In the mean time, here is a video of her running around the train at Primary Children's while we waited for her medicine... (taken with my camera phone, so sorry for the quality...)

Next appointment is on Friday, August 28th...
Until then, much love to you all...