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...