The big day...

Noelani and Shaylin started school last week on Tuesday and have LOVED every minute of it. Noelani is thriving as an 8th grader and making even more friends then she already has, keeping me confused to death Algebra I and French B, and coming home with funny stories about her wacky teachers every day. She was frustrated that even on the first day there was homework and it's not let up at all! Now that's funny stuff!

Shaylin has let her teacher know that she cannot have homework because "I have to play with my sister, eat dinner, watch America's got Talent, take a shower, and read a book each night so homework won't fit anywhere" Wow. Talk about having a way with words! Thank goodness she has a fantastic teacher, Noelani's 4th grade in fact, and knows that Shaylin is one of those kids that really speaks what's on her mind and then sorts through the consequences. The teacher then explained that not having homework wasn't an option but she'd keep that in mind for future reference. Shaylin so rocks!

So the first day of school went off without any major hitches, thank god! So starting from the top she woke up in a fantastic mood! I am talking a big giant smile on her face from the moment she opened her eyes and asked me if I remembered what today was. I played along and told her no, I didn't. She then jumps up on the bed and yells it's the first day of "kindy-garden" and she get's to go! It was wonderful to see her so excited and happy over something that most children would groan about.

Once we got to the school we did a quick stop by the nurses office to drop off tanks and do a quick rundown on switching bags in case she wanted to tote her tank behind her instead of carry it (she won't take off the lil'bug now that she's had a chance to get it on). Once we were done with that we headed down the hall to her big girl classroom and she had a few trepidations about entering but got over it quickly and did her thing. She put up her lunch box, her backpack, her jacket, and moved her name over to the "in" box. She got to pick where she wanted to sit and sat next to another little girl and started drawing a picture and just kept holding onto our hands. We stayed for awhile, 15 minutes or so, then got ready to go while they were moving over to the reading corner. She asked us to stay a few more minutes and we did, but left within 5 minutes as she settled in and started smiling!

When I went to pick her up from school at 12:15 I stopped at the nurses office first and before I even got all the way in the TA for her class saw me and said "Oh did you already see her? That's a good fat lip she's got!"

----groan-----

The nurse leads right into that and tells me that Alana was around the monkey bars and somehow ended up saying hello to someones foot. *ouch* She cracked her lip open pretty good, has a raspberry on her chin, and a fat lip. I am happy though that she had an aide keeping an eye on her and saw it happen and was able to take her into the nurse right away because she apparently, and would good reason, was sobbing and heaving. The nurse also told me that the SPED teacher brought her down about mid-morning to have her vitals checked and have the nurse take a look at her because she was very quite, pale, tired, and not responding like she had been 10 minutes ago & it worried them. I of course had told them that she does this, e-v-e-r-y-d-a-y & frequently, but it still didn't prepare them for what a change it is in her. After the nurse checked her SPO2, her HR, RR, blood pressure, and temp. (all within Alana range) they took her back to class but the SPED teacher stayed with her on a beanbag and just talked to her about dogs and cats and rainbows to keep her relaxed but involved with the class. She recovered enough to be able to work on another project and participate with the class during lunch and then the now infamous first kindergarten casualty so that was good. When I got there right after recess she was done, capital D O N E, done. She had an icepack on her lip, was curled up in the book corner listening to the teacher read and asking to go home.

Want to hear the best part though? I am talking the icing on the cake, the Pièce de résistance...as she was falling asleep in the car on the way home she said something that made every doubt I now had swimming around in my head about her going to school dissipate in an instant:

"it was awesome mommy, it was awesome."

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?

EEG Results...

I know I didn't post right after she did the EEG but I needed a break from thinking about things, even though that didn't happen. In fact the opposite did and I've spoke with McDr no less than 4 times this week!

The EEG went well, in fact Alana did fantastic. She only had one episode of tears and hell, who wouldn't want to cry when it feels like your face is being licked off by an angry kitten! She did not like it when the tech. was cleaning her skin to attach the electrodes and with her "sensitivities" to things touching her skin I was so proud of her that she held out that long. Once things were underway and the tech. told her she could go to sleep she did and she did it with a quickness! I secretly was jealous that she was so willing to listen to the tech. when it takes me bribing her with my ear (she has rubbed my ear since her first hospital stay as a small toddler for comfort) to get her to sleep or she cries herself to sleep!

Once she was asleep they let her sleep for about 40 minutes then woke her up for the strobe light portion of the test. After that, it was only around 10 minutes, they did the part where she had to blow on a pinwheel for 2-3 minutes straight with big, deep breaths. This was by far the hardest thing for her to do. She was only able to do it for 10-15 seconds before she was gasping and trying to re-group. During this time she had one of these blank stares that she's been doing, it was similar but not at the same time. The tech was standing there by this point trying to get her to blow on the pinwheel and noted it but felt it was due more to the fact that she was struggling with her lungs and not her brain. Anyway--once that part was over we got to head home and she slept for the rest of the day, well into the evening hours when I woke her up for eat some dinner.

The results came in yesterday mid-morning and it showed little and a lot. McDr started it off with "essentially normal". So basically first they were not able to elicit the episodes of absence, or staring spell. This does not mean that she isn't having them, it just means she wasn't having one then. What it did show was an "abnormal response" to the strobe light portion of the test. Now I don't know what that means exactly, McDr was just reading the report from the neurologist to me. She did say he would clarify all this to us on her appointment with him...September 10th. She at least told me that he didn't feel it was a "big seizure", just an abnormality and the neurologist noted this abnormality consistent with mitochondrial disease. What's odd was she was the most relaxed while awake for that part of the test. She was fully awake, had her eyes closed, and was just at ease. Go figure. Alana is nothing if untypical right!

Right now we are just in the fun loving holding pattern. Results are starting to come in from Seattle and once the whole shebang is in I will break those down best I can and share them.

School starts here for the 2 rocking ladies on Wednesday (sad and happy at the same time!) and this week I will be meeting with the school team to go over Alana's needs and requirements. On Monday we find out who her teacher is going to be but I am confidant that it's all going to be alright. We did get some wonderful, wonderful, news though! Our DME finally (okay I told them we were leaving them to go with another company that would get us these) agreed to purchase the super small tanks for Alana!! They are the size of a water bottle and weigh in at only 2.2 lbs and 3 inches in diameter & will last on a conserver device for 3.5 hours! Wayyy better than the 10 lbs she drags in her ladybug! She will still need a rolling case for them because it's still a lot for a peanut to carry all day but it will make it so she can participate as often as she's able in recess and such!

I can't believe I am going to have an 8th grader, a 4th grader and a Kindergartener! it makes me so proud, sad, joyful, teary, and old feeling all at the same time! All 3 of the girls have come such a long way and I pray for the strength to keep all of us heading foward through this.

PS: We went to grandma's and grandpa's for some more downtime. If only we all could live in a place where the only sound is that of the water.

Back to school haircut

qrst...followup from yesterday

McDr called and first and foremost the x-ray showed that her left side of her GI system was cleaning out well, but her right side hasn't. On that note though we are going to give it another week, the right side. What McDr is thinking is since the left side is looking well that we wait and see if the right can follow suit. Maybe now that there's some more room in there the rest that's full will work it's way out without having to undergo another procedure. Check back in a week on that one is the game plan.

On another note though she, McDr, said she spoke with the neurologist here about Alana again and gave him an update from Seattle and what's been going on, the increase GI, tone, eye drooping, etc., issues and he wants to see her back in his office for a "long" appointment and he expressed to McDr, who then expressed to us, that he feels she has mito. Now I've sat here for a few minutes trying to think about what to follow that up with. It's not that like we are not actively looking for that right now but to hear the doc here say "I think she has it, regardless of what the muscle biopsy says..." was a lot harder then I thought it would be. Maybe I am just tired. Maybe. This of course is just his opinion at this point, nothing more.

On a totally happy note, and yes, going backwards from last night with the bad/good news. Guess who's registered for kindergarten!! She is SOOO happy and telling everyone today that she's going to kindergarten and dancing around! I on the other hand am terrified! We still have a lot to do and get in order but we can handle that.

Also quick note here...EEG is on the 12th at 9 a.m. nothing more I can say on that one right now...I am still working through what they are looking for.

Love to everyone of you, thanks for all your support...even if I don't know your names.

IEP, EEG, LMNOP...

So this post won't be long, unlike the last one. PT finished up the muscle testing report and it was what we had come to expect, she's got issues in the balance/coordination area as well as the muscle strength arena. The official grade on it is as follows;
Alana's overall balance/coordination score was 8%. This means that she is more coordinated/balanced then 8% of children in her age group or 91% of children her age scored better in these tasks. In regards to her muscle strength she scored 24%. The range is the same as above for interpretation. Basically for many of the balance/coordination tasks she falls under what a 4 year old could do and around what a 4.8-5 year old could do for strength and she's almost 6. This doesn't seem like a big deal, I know this, but when you look back at what she USED to do this is again, a big change.

I know, I know, I need to stop focusing on the past and focus on the future. Nothing will come of fretting over what was, everything to gain from what can be, but it's hard and I won't deny that. When you watch things that used to be easy for your child turn into things that are now hard it's hard on everyone and so much harder on her.

Moving forward to today she had her recheck with McDr and some things went good, others went bad (go figure!). So do you want the good news or the bad news first? How do people usually want the news presented to them? For me personally I like to have the good news first, wait a few minutes, then get the bad news. That way I can have a few blissful moments of joy without interference caused by those pesky bad feelings so lets go that way: Good news...her ears are responding well to the anitbiotic drops and are showing signs of improvment! They are no longer bulging and red, just a little bit of fliud behind them still but none the less, getting better!



So just sit...sit still and take a nice deep breath. That's what I did--just breathe.



So to get right to it, she's lost more weight. In fact she's lost 1 pound 10 ounces in exactly 1 week. The MiraLax & Milk of magnesia is not working well enough to keep her GI system moving in the right direction therefor she is still having pain and backed-up. We ended up having to do another x-ray of her abdomen to check and see exactly how far backed-up she is. McDr will be calling tomorrow with those results. There is going to be another procedure (not going to go into that unless it comes to that) done if it's really bad so let's just hope that it's not too bad at this point. The plan is to change her from the magnesia to something else that I cannot pronounce right now and keep up with the MiraLax. She, McDr, was going to call Dr. P, the GI doc agian and make sure everything is inline for our appointment on the 24th. Honestly, this is getting freaking ridiculous! That's all I can think of at the moment to describe this!!!

Other then those major things we talked about school, tomorrow is registration, and what she's going to do. McDr thinks she for sure is going to need an IEP (individualized education plan) along with her 504 (to cover her O2 use). Our goal is something like 3-4 days a week for at least half the day and we shall go from there. Her pre-K teacher/adopted grandma, whom we adore, said she'd be willing to take her back lol!

We also went and looked at Alana's soon to be new ride tonight, it's an adaptaive chair. Think of it as a stroller on 'roids! It's a more supportive seating system for her and made for children with disablities. This isn't the one we are going to get now though, it was and that's why she's in it, we just decided to go with the step down model because it can be tweaked to fit her needs without being sooo overkill.


Anyway, that was how the last 2 days have broken down and I hope the rest of the week will go smoothly. Tomorrow doc's office is suppose to be calling me with the date and time of the EEG so we can get that done and over with but I don't suspect that will happen this week. If things look bad with her x-ray I will update sooner rather then later or if anything else changes.

"Wondrous is the strength of cheerfulness, and its power of endurance - the cheerful man will do more in the same time, will do it better, will preserve it longer, than the sad or sullen."