The good, the bad, and the fugly...

What a day today has been! There's been some good, there's been some okay, and then there's been some bad. When the day makes you question if you are really here or on some bad alien game show--that should be telling you something. Like go home and get under the covers.

This morning I met with the school to get the process going to have Alana evaluated for an IEP instead of just going with a heavy 504. For those lucky enough to not know what those things are here's a quick breakdown:

IEP: Individualized Education Program (alternatively called an "Individualized Education Plan," "Individual Education Plan," or some combination thereof). This is a legally binding document that spells out exactly what special education services your child will receive and why. The individualized part of IEP means that the plan has to be tailored specifically to your child's special needs -- not to the needs of the teacher, or the school, or the district. Goals, modifications, accommodations, personnel, placement, all should be selected, enforced and maintained with the particular needs of your child in mind. "We don't do that," for example, is not an individualized response. If your school has never had a child like yours (and since your child is an individual, they haven't), and now they do, and a service is appropriate to his or her needs, then they do do that now.

504: The "504" in "504 plan" refers to Section 504 of the Rehabilitation Act and the Americans with Disabilities Act, which specifies that no one with a disability can be excluded from participating in federally funded programs or activities, including elementary, secondary or postsecondary schooling. "Disability" in this context refers to a "physical or mental impairment which substantially limits one or more major life activities." This can include physical impairments; illnesses or injuries; communicable diseases; chronic conditions like asthma, allergies and diabetes; and learning problems. A 504 plan spells out the modifications and accommodations that will be needed for these students to have an opportunity perform at the same level as their peers, and might include such things as wheelchair ramps, blood sugar monitoring, an extra set of textbooks, a peanut-free lunch environment, home instruction, or a tape.

So now that you are "in the know" you can join the adults at the adult table! So just from that you can see why a IEP would be a better fit then a 504, therefore something we'd like to see if she needs/qualifies for. Anyway--that meeting went well, long, but well. My only concern is that she has to go through this testing procedure and it can take up to 45 school days to complete, ergo, up to 45 days that she's not getting aides, recess help, etc. The school did say that they will unofficially watch her and have one of the SPED TA's keep an eye on her as well as the regular class room TA, and of course, Larry & I will be stopping in. For right now she will go 4 days a week for 3.5 hours each day. We will then adjust accordingly to how she does on any given week.

Then next appointment of the day was kinda a surprise but a surprise in such a rockin way!! Her new tanks came in! The one's that the DME ordered just for HER and just because she is going to school! The one photo is of the tank that we currently use; that's what's hidden in her ladybug. As you can see the new tanks...holy hockey sticks are they way smaller! So they yes, the next logical question is well what are they going to last?! 5 minutes?! Nope, notice that silver funny looking piece on the top? Well that's a conserver device and it makes those tanks last the same amount of time as her larger ones! Whhhoooooo Hooooo!! First thing she said when we put it in a backpack (Lady bug came with a small backpack that matches) was "Mom! Mom! I can use both my hands!!" She was so excited and it really rubbed off on all of us. It's so wonderful to see your child excited over an O2 tank lol




So onto the last appointment of the day, the long awaited GI appointment. God love McDr. I felt like I didn't need to do anything for the first time in a long time. McDr had spoken with them a lot about Alana laying the ground work and covering a lot of the background information that I would typically have to do. For a new doctor to see her and already have so much information was wonderful and exciting, and a relief. We had done another x-ray right before we went up there and it didn't go well. It's worse then the abdominal one we did a few weeks ago instead of better. Her GI system is just not sending the messages to the brain that it needs to any more so there was a lot of talk about the things we are going to try over the next 4-6 months to rewire those pathways. I am not going to go into what some of those entail because they are invasive and uncomfortable and frankly, as Alana would say, "It's my privacy!". There is a plan in place and we shall see how it goes. We have who we need to contact next week to see how she's doing and we will go from there.

Her next official appointment with GI is on September 10th. This will be her pre-op appointment for her colonoscopy, endoscopy, & tube placement. At this point she is scheduled for all that on the 11th. It will be okay and even her PT's think this will make a difference for her overall. So repeat, it will be okay. It will be okay. It will be okay. Now that the choice has been made I honestly think it will be okay, not having to worry about which way this was going to go, for me, helps.

So that was the day. It was a long one and I still have things to prepare because guess what tomorrow is...Alana's first day of kindergarten. Wow. My baby is going to kindergarten. She's bright, smart, witty, stubborn, thoughtful, strong, and amazing and now she get's the chance to shine and share all of those things with her teachers and peers. If I ever could make a book about endurance and strength it would have all 3 of our daughters in it leading the way and rocking.

Where does time go while you are waiting for it?