Interviews and Assessments Galore

Today I had an interview by a lady from Social Services and a nurse from the Health Department. I am applying for an EDCD Waiver to obtain Medicaid for Annabelle. Here's the thing about the EDCD Waiver; I must prove that Annabelle's medical needs are so extensive that if she were not in my care, she would require a hospital / nursing home-like setting to meet all her needs. Instead, she is home with us but as a family, we need home health assistance to help Annabelle thrive, and provide me some sanity. The EDCD Waiver will appointment a nurse to come to our home and help care for Annabelle so AK and I can work out of the home / go to dinner / grocery shopping, etc.

I also need Medicaid. Annabelle's prescriptions, co-pays, procedures, formula are so incredibly expesive we are drowning. Medicaid will help cover those costs burdens to us and allow us to continue getting the things Belle needs to thrive. Such as, I need to pick-up the Pulmicort prescription but it's $435 and I just don't have that right now! I also need to order her PPI but that monthly prescription is also $84 and I cringe placing the call for a refill. She needs Medicaid, but as a household, we make too much to qualify. The EDCD Waiver will guarantee Annabelle Medicaid coverage.

I believe the interview went well. I did a lot of homework ahead of time and had a lot of paperwork printed out for the nurse to review. I answered the questions as thoroughly as I could. About an hour into the conversation, we moved to the section of questions where they began asking about Annabelle's emotionally behavior. Some of the questions were completely unrelated such as "Does she talk about not wanting to live, commiting suicide?" but one question provoked a thought that I hadn't considered yet and it left me with tears streaming down my face, unable to talk any longer.

When Annabelle is working on something, if she can't figure it out, she sometimes screams out of frustration or just drops it and gives up.. not moving onto the next thing, but just drops it and sits with her head down. When she is eating at the dinner table, bite after bite she may cough until she vomits; finally, she just stops eating and gives up. Every picture we have Christmas morning, Annabelle wasn't very interested in opening gifts, but just laying in the floor with a sad little face, wanting to be cuddled up and next to someone (daddy) but just not interested in all the 'happiness' of the event.

For so long, everything she tried to do was just exhausting, she was constantly defeated and she just began to give up. She cannot communicate to us her frustrations so she stops trying. She cannot eat a meal without it hurting her so badly and then vomiting, she just stops eating although she enjoys food. I had a depressed infant. NOTHING breaks a mother's heart like seeing her baby sad and upset. And I reflect back at all the situations and events where I didn't understand her behavior and it is now ever so clear. She was just defeated in this disease. Like a prisoner in her little painful body that can't communicate her feelings or emotions, she just gives up.

My heart absolutely broke for her. Not 10 minutes after we moved past that section of the interview, AK was home with Annabelle and she pranced thru the door with a smile ear to ear and ran up to me in her sneakers that make walking look very toddler-like! She gave me hugs and kisses with a smile on her face and made her way around the room. Ive never seen my baby so happy. Im watching her blossom into the infant / toddler / daughter that I always dreamed she would be. I love her. For everything she has been thru and her fight for so long, I love her even more today that I have yesterday because I see the smile on her face that I have been fighting for her to wear. Ive never seen such geniune happiness in my sweet Annabelle until this past week but I see it now. It's been worth every fear, tear, prayer, worry, countless hours of research, journaling, doctor trips, begging for answers, savings accounts checking accounts, everything. 


1:30pm was her assessment with Infant and Child Connections to determine any developmental delays. AK took her and it KILLED ME not to be there during the visit! He gave me a very detailed report on how everything went however (he's learning what I like to hear.... details details details!). They had two women doing the assessement. 1) Cognitive Behavior 2) Speech. She seemed to do excellent in a lot of areas, in fact, her cognitive skills were almost at a 20mo level! Her speech however, specifically Expressive Speech was at a 10 month olds level and will require speech therapy. I want to discuss the visit a little more tonight with AK so him and I can develop a plan for what we will want out of speech therapy and will call them tomorrow. For the most part, I want her brought up to the level that she should be on naturally, and then I would like to learn how to communicate with Annabelle and teach her how to communicate with me. I believe that right now is the very BEST time to getting her help. She is happy, full of energy and like a sponge. She wants to learn and wants to communicate and finally has the energy and patience without being in pain to do these things. I can't wait to see how fast the speech therapy helps us, Im looking forward to it.


Let's change pages for a second. Can we talk about how much I despise Lincare Medical? 
Here's a reminder why: 

1. When Annabelle was about 5 months old. I noticed we were getting low on formula. This was Wednesday evening. I called Lincare first thing Thursday morning and asked why I hadn't received my shipment. Everyone was clueless and they promised they would expedite the order. That's great, however, I will run out of formula before the order arrives on Monday, I need cans NOW! The lady over the phone assured me that a dietician would be out to my house to deliver a couple cans tomorrow (Friday). I was learly but I said ok. Of course, Friday afternoon, I never saw a dietician. I called the office and got an attitude from the first girl, shortly after disconnected. Called again and was transfered to who I needed to speak with. I stayed on hold for 10+ minutes before calling back, when I did, they were closed. I called the emergency, after hours number repeatedly and never got a call back. I ended up spending 8 hours calling EVERY SINGLE pharmacy, hospital, hospital pharmacy, doctors office, patient first, kidmed, pediatrician until I finally broke down in tears and didn't know what to do. It was 10:00pm on a Friday night and my baby LITERALLY didn't have any food to last the weekend. I called the CJW NICU and asked for any insight. The sweet nurse dug thru an old cabinet and found ONE can that was expiring that month. She hand delivered it to my house the next morning at 7:00am. She is an angel. The shipment didn't arrive until Tuesday evening and I never heard from Lincare.
2. After this incident, I began researching ways to find the formula cheaper. We were being billed $3,192/mo for the unreliable shipments and with a quick internet search, I found that I could order the formula from the manufacturer myself, without having to go thru the medical supplier!
1. Lincare supplier = $95/can
2. Directly from manufacturer = $35/can

Anywho. Let's move to the present. That was over a year ago and we haven't dealt with them since. Annabelle will now be on formula for a long, looooong time and fortunately for us, we have reached our maximum out-of-pocket for the year, so if I choose to use a medical supplier for the formula, it will be 100% covered, and I won't even have to cough up the $770/mo for the formula myself that we have been paying. Unfortunately, my insurance will not work with Pediatric Connections (another supplier) they will only participate with Lincare. Great. The nurse from Dr. Villalona's office has sent my paperwork to them 3 times in the last three weeks and keeps asking if I have heard from them, I haven't. I called today to ask at the GI Office what I should do, and mid-conversation I stopped, asked for the number and just called Lincare myself. The girl I spoke to first, said that she never received anything, and then later confessed that she did get the information but said she had noted in my file I can get the formula cheaper elsewhere so she never bothered calling me. That was a year ago! So she just chooses to ignore the doctors paperwork that is being forwarded her way? Incredible these people are. I don't know how long it will work out again with Lincare, but I sure do know that they need to get their act together. I can't be the only one having to deal with this nonsense.

Highlight!

The weather outside is ABSOLUTELY BEAUTIFUL! For the first time, we're feeling sunshine and warm days. I couldn't be happier.