Schoolin' at Home

We homeschool. Its true. No, I am not a religious zealot, I don't have hair braided to my backside, we don't spend our evenings by the fireside knitting while Father reads us a story, I don't have the patience of a saint, and I don't have perfectly behaved angels from heaven. *And if you are reading and happen to be any of the above, there's nothing wrong with that!

We are "regular" people. We watch TV, we sometimes yell, we strive every day to be good Christians and probably fail miserably, I sometimes wish I could send my children off to school so I can go pee by myself, I don't always know what I am doing, and my children argue from time to time. Lucy has been known to have a smart mouth and Zachary farts in public.

We school at home because we deeply believe it is what is best for our children. We tried public school once, but in a very short time we could see how differently Zachary learned, we knew public school would never fit. In the time since we've been homeschooling (going on 2 years now) Zachary has changed dramatically- he has higher self esteem, manages stress and anxiety better, has made strides in his social skills, and is overall pretty happy. I work around Zachary's needs, coach him through problems, and try to grow him into a capable, well rounded, confident, independent student.

Zachary learns best from hands on learning, with as few worksheets as possible. His attention span is best in the afternoon/evening when hes gotten all his wiggles out in the morning. Zachary needs an everyday schedule that stays roughly the same and is clearly laid out in print at the start of the day. He excels in reading but flounders in the math department. He absolutely LOVES history. We read as much as possible, everyday because its what hes loved since he was a baby. My most favorite time of the day is when we curl up together in a beanbag chair to read.

All of that is not to say it isn't hard and that I'm not still discovering exactly what works and what doesn't work for us. The last two years have had huge struggles. In the one year Zachary was in public school he was able to draw a clear line between me, his mother, and his teacher. The idea of suddenly blending the two together into one mutant beast Teacher Mom wasn't an easy transition for my rigid little guy. Zachary is also not the most enthusiastic learner. Its a struggle for him to focus, to understand, and to sit still so its no wonder that education is not his most favorite past time. There have been days I feel defeated and frustrated, as though I am not good enough to do this.

We've stuck it out, developed a finely tuned routine, and I continue to look for ways to improve our academics everyday. Some days are stellar and I feel like the high champion of moms, and others I feel like I am doing very little the "right way". There are many days we spend sharing, working together, achieving, and growing that we could not have without homeschooling though. The highlight of my day yesterday was a deep discussion(for a 7 year old) on Hammurabi's Code and the many reasons why my compassionate little guy was opposed to quite a few of Hammurabi's laws.

When we mention that we homeschool people often think it seems impossible. But the reality is, as parents we all started out homeschooling our children. We teach them to talk, walk, build block towers, use a spoon, their colors, their numbers, their alphabets, ride a bike, use the potty, share, eat right, and more. Continuing to homeschool beyond the preschool years, in my mind, is just an extension of the "homeschooling" we were already doing.

Homeschooling has come a long way over the years and its quite mainstreamed. Its easy to find clubs, groups, co-ops, and blogs to connect with. There are many many many options for curriculum out there in order to custom tailor your approach to teaching and they can be purchased at prices ranging from high to low on the internet. Homeschooling isn't just for the "crazies" anymore. The vast majority of homeschooling families we meet are everyday normal people.

I still have a lot to learn about this whole process but everyday I feel more and more confident that we are doing the right thing for our children.....even if I may never get to go pee by myself again.

Update

Whew! What a weekend! We were so busy I think we may have had an hour or two each day to sit down at home before running out again. The kids got to spend lots of time with both sets of grandparents, and other family and friends between birthdays, weddings, and outings. It was a lot of fun! Zach's Chester the Cheetah event even went off without a hitch and was actually kinda a fun experience...or at least a funny one!

I really can't say how much we appreciate all our family and friends. I am not sure if I mentioned it before but back at the beginning of the year Big Zach got a promotion/project at his job and one of the pluses has been weekends off. We have been able to spend so much more time with our family and friends because of this. He still works long hours and works very hard, but having weekends off is sooo great! Over the last 4 years, since Lucy was born, Zach has often had to work two jobs, weekends, or evenings to make ends meet- so having this little luxury right now is a blessing.

When things here are stressful, its such a relief to get together with our family and friends to escape. Their love and support brings us up every time.

Lucy is doing alright at the moment. She's still got some raging reflux and that tends to make her a bit irritable at times. Her weight seems to be holding (roughly at least, some days I am showing a loss here on the scale at home). I would love to see her pack on a pound or two though. Shes pretty skinny at this point.

Our next appointment with the GI isn't until March 22nd. I am going to try to resist the urge to have her weighed until then.

I don't expect to hear from Ohio anytime soon. From everything I have read it can be 4-7 months before we are in. That is quite a long wait!

Thank you so much for checking in on Lucy!

Busy Busy!

Sorry no posts for so long! We have just been really busy (its rare I know). There's not much to report other than the daily life stuff. Here is a small smattering of it to bore you:

Lucy got a new haircut. A dramatic asymmetrical cut that is way short, but looks oh so cute on her.

We're on our second day of randomly warm temperatures so we are spending as much time out as we can.

Lucy's DME(medical equipment supplier) messed up her formula order AGAIN and she ended up on Neocate 1+ for several days while I sat on the phone 100 times to sort things out. Have I mentioned how much I loathe this company??? Their response to the mix up? "Uh, I don't know how that happened. Ooopsies!" Great, in the meantime the life sustaining medical supplies you provide us with are missing over Antarctica somewhere.

Zachary has really gotten interested in "The Magic Treehouse" series of books. He doesn't want to admit he actually LIKES to read, but when we went to the library yesterday I pointed out a rack devoted to the collection and he eagerly picked out another one because he finishes them off in a matter of days. I was a proud homeschoolin' mama at that moment.

The van's brakes went out and we had to haul it in for some repairs. I swear it heard we got a tax return and wanted a piece of it! Darn Murphy!

That's about it. This weekend is fully packed with things to do yet again. And, shhh, don't tell, but part of it involves my husband dressed as Chester the Cheetah (yeah, don't ask, he doesn't like to talk about it). I won't lie though, I do like being busy with family and friends. I can't complain!

Thanks for checking in!

Weigh In

Lucy had her weight check with the pediatrician this morning. We have a 3oz GAIN! I guess that speaks volumes for the Vivonex! Finally, a move in the right direction here!

And as I was walking in the door this morning I heard from our GI. He basically said what we already knew- that her small intestine is BAD, like REAL bad. This information means that Lucy has a "motility disorder" and it is difficult to treat. There is either an issue with the muscle of the GI tract, or an issue with the nerves that causes it not to work properly.

What he also told me was that we are at a point we need to seek out experts. He has maybe 10 patients in his care that are even on a similar plane as Lucy. He took the liberty of sending all of our files up to a hospital in Ohio that specializes in motility disorders. Where Dr. G has 10 patients similar to Lu, they have a 1000. They will review Lucy's information and then decide if they have something to offer. Dr G said given the results of her Upper GI, it isn't likely we will be rejected.

So now we wait.

Distracted

The GI still hasn't called. I have been carrying my phone to the bathroom knowing he will call the moment I step away! Of course, because he hasn't called my mind focuses on little else. I am completely distracted and exhausted. I just want to know where we go from here at this point.

So far the Vivonex trial seems to be holding its own. Its no Neocate 1+, but she isn't profusely vomiting or anything. Her reflux is pretty bad. When I laid next to her while she napped today I could hear her spitting up in her mouth and swallowing it in her sleep. And why was she napping today? Because she hasn't slept through the night in at least a week.

I think they yay or nay on the Vivonex will come from her weight check. According to my scale shes down a few ounces again, but I don't rely on that for certain. I'm going to set up a weight check with her pediatrician hopefully this week.

Thanks for checking in on Lucy!!

Upper GI

The Upper GI was tough yesterday. The day was absolutely exhausting. Lucy was a real big girl though and I was so proud of her. She did everything they asked her and was super patient when they stretched her out on the table and flipped her like a pancake every two seconds for ten minutes. Despite being offered whatever expensive prize she could find, it only cost us one coloring book from the gift shop and a Color Wonder activity pack from the toy store. She did great! She was such a good girl!

Unfortunately the test itself did not give us good news.

Things started off looking perfect. The radiologist remarked that she thought her stomach looked great and was emptying on time. Other than a couple episodes of reflux she didn't note anything unusual. I wasn't surprised she saw the reflux, we've seen a huge rise in it since starting the formula trials, but I was shocked that her stomach was okay. I thought, "Here comes another test that gives us no answers, stresses my baby out, and costs us a fortune."

But as the morning wore on the x-rays to check on the progress of the barium became farther between. Lucy got more and more tired and paler and paler having not had formula or water for so many hours. She didn't even urinate from the time she woke up that morning until well into the evening after we had gotten home. The test was SO exhausting for her.

Finally after an x-ray at about 1:30, the nurse told us to sit in the waiting room because the doctor wanted to speak with us. At the beginning of the test the doctor told us that she wouldn't talk to us again unless there was a problem so we knew something was wrong.

She came out and told us the Lucy's small bowel was barely moving at all. That once the barium had moved into the small bowel it began to completely crawl. Her small bowel was barely functioning and the barium was barely moving. If she were to keep us until it reached the end we could be there all darn day. She was kind enough to page our GI, who apparently knew we were there already and made sure to actually answer the phone. He told her we could stop the test, we knew what we needed to know.

This is significant information. This is the first time a test has been done and told us something we could really use in her treatment. I am deeply deeply concerned however, because whenever there is a malfunction further down the GI tract it gets harder and harder to arrange for proper nutrition. If you remember, a GJ tube has been on the table as a big possibility in the future so that we can increase the rate at which we feed Lucy and get her to grow. The GJ tube feeds the small bowel....this test may have indicated that would be a pointless procedure for her since the small bowel isn't working.

The radiologist gave us the gist of the results, but really couldn't tell us what kind of impact this would have on her treatment, other than stating she wasn't recommending a GJ tube at this point.

Of course, it was a Friday and I did not get to speak to our GI to discover a plan of action at this point. So, we have all this bad news to stew on for the entire weekend before we can actually discuss where on earth we will go from here. Talk about emotionally draining!! If I had been alone for 10 seconds at any point yesterday I would probably have had a complete breakdown from the pressure.

However, instead, I spent what was left of the day snuggling with Lu, shopping for her "prize", and later met up with one of my oldest friends to snarf down a 20 piece box of nuggets. That's therapy.

My plan for next week is to continue to keep a close eye on Lucy's Vivonex trial, aggressively try to get in touch with her GI, and get another weight check to see where we stand nutritionally.

As always, thank you for checking in on Lucy!

Getting Ready

Today we are on 3 parts new and 1 part old. So far things are going alright. But then again, it was about this time on Elecare that I thought things were going alright too. So we'll see!

Lucy's Upper GI is tomorrow morning, so today I am packing Zachary up and taking him out to his grandparents for a sleepover. This test can take several hours and I don't want Zachary to have to sit through it, it will be hard enough keeping Lu from climbing the walls.

Lucy will need to fast all morning tomorrow and I am a bit nervous about it. Lucy sometimes struggles to keep her blood sugar up when shes off the pump for a stretch of time so things get very difficult for her as the fast wears on. I made arrangements to get an older stroller of hers with a high back and a recline from family so that she doesn't need to worry about walking or sitting up while we are there.

Hopefully everything goes smoothly tomorrow morning and I don't get lost wandering around the hospital looking for radiology!

Thank you for checking in on Lucy!

Moving Along

So far so good! Things aren't too bad....or at least I don't think they are. She's complained her stomach hurts but that just could be her normal. She seems energetic and according to my scale shes gained a few ounces. This morning I moved her ratio up to 1/2 new and 1/2 old formula and I am eager to see how it goes.

Lucy's Upper GI is back on for this Friday. Turns out its an error in paperwork and the actual appointment is still set for an UGI. I called and was actually able to speak to the technician who will do the UGI, which was reassuring.

Thank you for checking in on Lucy today!