This week

Monday and Tuesday were just a blur of busy-ness at work, so I'll start with all the excitement of Wednesday. I stayed home that morning because Nate's class was having its spring music program. But between taking him to school and arriving for the music program, I took Georgia to the doctor because I suspected she had an ear infection. She hadn't been sleeping well and had a runny nose and cough, but the night before, I saw her cupping her hands over both ears. Seemed like a sure sign of an ear infection. Well, the doctor said her ears looked perfect, but he heard some wheeziness in just one area of her lungs, and he was afraid it might be pneumonia! What?! I totally was not expecting that. Georgia isn't supposed to get sick! Nate gets sick enough for the both of them. And she really hadn't even been acting like she felt bad. So he gave us an antibiotic and said to call back on Friday.

We went straight from the doctor to school for the music program. Blake was already in the classroom, but when I was going through the office, I saw a bit of a commotion and the secretary told me the teacher would need to speak with me. Ms. Melissa told me and some other families that siblings would not be allowed at the program. Well, I knew they didn't like siblings to come to certain events (although I don't exactly understand the reason, so if anyone knows, please share), BUT siblings were allowed at the music program in the fall, so I assumed it was okay. They told me I'd have to stand with Georgia in the hall, and Blake could stay for half the program then come outside to take Georgia and I could go in for the second half. Whatever, fine. Well, another family was very upset and threatening to just take their daughter and leave, and more and more families were showing up with siblings. Of course everyone wanted to bring the whole family! This was the end of the year music program, and both parents wanted to come, and siblings wanted to come too. Finally, after a delay of at least 20 minutes and talk of a teacher babysitting in the office and other scenarios, they decided siblings could come into the classroom. Sheesh.

I took this one when I was banished in the hallway. :)

While we were waiting, the kids sang a song in circle time.

Then they all went outside and got to come in to accept their certificate of achievement.

Okay, so then it comes tim for the big music show, and we were all looking forward to the adorableness because the show last fall was super duper cute. Then they tell us that they actually recorded the music program last week during class, and they were just going to show us the recording. Say what? And during the whole recording, Nate was just staring off into space with his mouth hanging open and not even singing, lol!

The whole time Nate was eyeing these cookies because I guess he didn't like the lunch I packed him and he was starving. He went over to ask a teacher if he could have one, and he came back and said, "Miss Christy said not yet, but I'm hungry!" Finally another teacher cut off the video before the last song was even over and said, "Okay, we have snacks back there, but take them and go because we have another class coming in!" Nice.

Back to Georgia. Since Wednesday, she seems to have gotten worse. She's just acting sicker and not eating well and coughing worse. This afternoon, I texted Alisa that she could bring Georgia to work for me to nurse if she still wasn't eating well, and that was just about the time that Georgia crawled over to Alisa and laid her head down on Alisa's knee, so she immediately texted back, "We'll be right there!" By the time they got to my office, I had already made a follow up appointment for Georgia at the pediatrician. This was a different doctor who did not thing she had pneumonia, but she was very wheezy. We did a breathing treatment in the office which helped a lot, so we're to do those every 4 hours for the next couple days. That's going to be fun, because she fights it the whole time! But I'm so glad it's not more serious and that this helps.

Nate has been making some great progress lately. First, he's finally starting making progress with eating with a spoon. I'm not sure why this has been such an issue for him, but all of a sudden, this week he ate a cup of applesauce all by himself, and tonight he ate a cup of ice cream by himself in the car. He made an awful mess, but he didn't need help!

Also, Nate is learning how to play appropriately on playground equipment (that's me using therapist speak), including walking up the steps instead of crawling! This is awesome! The next step is walking up the stairs at home by himself!

After Georgia's doctor appointment today, Alisa and Nate met us at the mall, where Nate and I ate some pizza. As we were leaving the mall and Alisa was going home, Nate said, "I want my babysitter!"

Me: "Alisa said she's going home to have pizza with friends."

Nate: "I want to have pizza with friends!"

Me: "You got to have pizza with me!"

Nate: "You're not my friend, you're my MOM!"

Ha! Is this what teenager Nate looks like?

Hello, blog.

Well, I'm really hoping me going back to work does not equal the death of my blog. I seem to be going at breakneck speed from one thing to the next, and I don't particularly like feeling that way. I think it will take me a few months, maybe longer, to get in a good routine, find a good balance between work and home, and prioritize what's important and what's not. But for now, I do think the blog is important because, as always, I'm trying to preserve the memories of my children being babies.

But the second reason I haven't posted much lately is that I don't have pictures to share. I LOST my camera charger! :( So a couple nights ago, after tearing the house apart twice, I bit the bullet and ordered a new one. My camera is dead. But in a few days, I will be picture happy, I'm sure. Speaking of pictures, I did take Georgia to get her 9 month pictures taken! (I was pretty proud I kept up the 3, 6, 9 month pictures with the second child!)

She's pretty cute, huh? She's also into everything. She doesn't want to play with baby toys. She's only interested in things that look like something she shouldn't be into. So sometimes I give her a closed ink pen or adult spoon or a pair of sunglasses I don't like, just to keep her occupied and make her think she has something she shouldn't. Just a few minutes ago she broke one of my Willow Tree statues. Last weekend I set up Nate's easel in the living room, and after she watched Nate a few minutes, she crawled over, pulled up to stand at the easel, got a closed glue stick and started "writing" on the chalk board like "I know how to do this!" It was cute until she started swiping the chalk and markers to put in her mouth. Poor Nate can't even eat at his car desk anymore because as soon as she sees him with food, she speed crawls over (she and Maggie look like they're racing) to pull up and grab some of his food. Nate does not like that.

Nate is doing pretty well right now. Still happy for the most part. He's doing this weird thing where he stuffs his mouth with food then won't swallow or spit it out, just holds it there. It's very strange. But he's said a few cute things I wanted to put here lately. A few minutes ago, he was rubbing his eye with the back of his hand, and he stopped with his hand covering the eye and said, "Hey, look. I'm a pirate!" Haha.

Also this evening, he said he wanted Daddy to come home. So we called Blake, and I let Nate talk to him the whole time. He said, "You need to come to our home! Because you're at work and not at our home. And I want you to come home. You need to play with trains. That train right there needs help chugging." :)

Yes, I still like my job, a lot. I ran my first playgroup this past Saturday, and there were 56 people there! That's the biggest playgroup yet. It was a lot of work, and a lot of fun, and there were parents having great conversations with each other and making friends. So it was a big success. And did I mention a lot of work? :)

All good updates

Nate
I'm happy to report I have my happy Nate back. The Keppra is out of his system, and for the most part, he's a happy guy. And when he's not, it's just normal Nate drama. With the exception of Sunday evening (I won't even go there), he's been in a very good mood, hasn't said he's sad once, and I'm a happy mama.

Yesterday I went to his IEP (Individualized Educational Plan), and everything went smoothly. He will get a little less PT (20 minutes per week instead of 30 like this year) because he's doing so well; the same amount of OT (30 minutes--she was going to reduce it to 20 minutes until I added another fine motor goal at the meeting, lol); and they're actually increasing his speech from 25 minutes once a week to twice a week. Their priorities are exactly opposite of mine--PT is most important to me, followed by OT, then speech--but Nate gets PT outside of school, so everything he gets there is just gravy. They made accomodations to give him more time to get down the hall (and I will NOT take the stroller next year) and to give him water as needed because of the side effects of his medication. They're going to focus a lot on self-help skills (because that's all he scored low enough on to qualify for), and my request was that they try to encourage him to interact with his classmates more instead of just playing alongside them.

Yesterday I also took Nate for an assessment for Minds in Motion. This is a program that works with kids who have vestibular sensory issues--which Nate definitely does! Blake and I were totally sold that Nate could benefit from Minds in Motion when we went to the Open House a couple months ago, but we were waiting to see if we could get a grant for the tuition. Yep! All $1,200 is paid for! Whoohoo! He'll start June 1, and we have big hopes for what this might mean for Nate, especially in terms of him being able to regulate is moods a little better, but also in his balance.

Oh, and today, Alisa took the kids for a walk, and Nate walked ALL THE WAY TO HIS SCHOOL. That's at least a mile. And he would have walked farther, but he TOLD ALISA that he had to poop! He told her! So he boarded the stroller with Georgia, and they raced back to the potty. Poor Maggie tagged along, not knowing what she was getting into, and she tired out well before anyone else. Alisa

Georgia
Well ... she took her first steps last night. She is 9.5 months old, people! They were still those falling-to-get-to-the-couch steps, so she hasn't taken off just yet, but it's a matter of time. As usual with Georgia, I just watch these milestones with wonder, but in all of our minds, we think, Of course she took her first steps. It was a given that she would do it. And so there weren't tears and phone calls to everyone we knew, like there was with Nate. But I know that watching any child take its first steps is witnessing a miracle. I wouldn't have known that if not for learning with Nate that having a healthy child is not guaranteed.

And in typical 2nd child style, I didn't even get a good picture. I can't find my camera charger, which is driving me crazy. So I took this on my cell phone. Poor second child. She's awfully cute though.

My Mother's Day Message

To my mom:

Thank you for making me go to church every Sunday morning, Sunday evening, Wednesday night and Thursday night (youth group, lol) growing up. Most of the time I didn't like it and just did it because you wouldn't accept no for an answer. But when I got older and the choice was up to me, I missed it when I didn't go, and now not only do I want to go to church, I want an ever deepening relationship with God.

Thank you for showing me by example what it means to do the right thing even when no one is watching.

Thank you for teaching me about hard work and doing a job right or not at all.

Thank you for teaching me the joy of gift-giving. You are the master of this, and it makes everyone feel loved.

Thank you for showing me by example that sometimes being a daughter means driving 45 minutes both ways every evening for months just to take care of and spend time with your mother when she is dying.

Thank you for showing me by example that sometimes being a mother means selflessly giving to your child when she needs it without making her feel embarrassed or throwing it in her face down the road.

Thank you for teaching me that being a wife means sticking by your commitment even when it's not easy.

Thank you for teaching me that being a child of God means trusting and following His will even when it's scary.

To my kids:

I have never been more proud of anything in my entire life. Nothing even comes close. Before I had you, I thought "proud" only described something you accomplished. But I am proud of your mere existence. I love you all the time, no matter what. And being your mom has shown me a glimpse of how much God must love me. On Mother's Day and always, I'm so thankful to be your mama.

Derby Week and Catch Up

Working full time + the mommy thing + the wife thing = okay, I got this. But add in the Kentucky Derby, and it's all over! Last week was a little crazy, and the weekends before and after were a little crazy, and I'm just now recuperating.

The weekend before Derby, my parents came to town, and we celebrated Mother's Day early at our favorite place, Buca di Beppo! (You should hear Nate say that.) It also happened to be prom night, and there were torrential downpours, so not a great night for going out to dinner, but once we got there it was fun.

My parents

The family

Mom and brother Lucas

With Nate, restaurants are always ... and adventure.

Here he is under the table balancing a spoon on his nose.

I thought Georgia was going to sleep, so she stayed in her carrier most of the time, but she didn't. Give this girl a spoon and a straw, and she's happy for a good hour.

She always has a bit of a crazed look in her eyes.

Nate destroying my necklace

Going to church the next morning.

At church, whenever one of the childcare numbers is flashed on the big screen, we just assume it's probably Nate (out of the hundreds of kids there) and check our numbers. Well, this week, sure enough one of our numbers was up on the screen, but this time instead of Nate, it was Georgia! She had been crying inconsolably. The next day we found out she had an ear infection.

Derby week is a very interesting time in Louisville. This is only our second year here, so it's all still new to me. If you're wondering, yes, you really do see women wearing huge fancy hats all over town for a good week. And most of the town shuts down there for a few days. On Monday, I got my first look at Churchill Downs, and I got spoiled! I went with some work friends to "Dawn at the Downs" and had breakfast and watched the Oaks and Derby horses exercise from Millionaire's Row. Here are some pictures from my phone.

Thursday was our big day at work. We had a fundraising event--the Oaks Eve Gala. I believe this was my first gala. :) That morning I took Nate to school, then took Georgia to work with me, and tried to keep her happy (she mostly cried) while filling gift bags. Alisa picked her up after getting Nate from school, and we had an event to put on. We hustled in the afternoon and then got all fancied up for the night. It was really fun, and pretty much went off without a hitch. I didn't get home until after midnight, and I was sore all over from wearing heels on concrete all night. I didn't work Friday, but we went to music class and had lots to do around the house.

Then on Saturday morning, the kids and I met Mindy and we all drove up to Columbus to visit Jenny and Ellie! We ate lots of good food, caught up on life, and watched the babies play.

Jenny and Ellie

She's a happy girl!

Not Georgia--look at that pout!

They LOVED each other!

Sometimes love hurts.

This is how I found Georgia sleeping that night ... not sure where the other leg went.

So, you might be wondering where Nate was during all this. He actually had his first solo overnight trip to Granna and Pop's house. We were all a little nervous about how he'd react--as much as I went on and on about his big adventure and having Granna and Pop all to himself, I don't think he realized I wasn't going to be with him until he left in their car and I left in mine. But he actually did way better than any of us thought he would. Granna reports there were no major tantrums (are we still talking about Nate?) and he actually went to sleep. So yay!

Sunday it just took us forever to get home, and it was raining and nasty, and we didn't even go home--as soon as we got into town, we went to a potluck with our Bible study. By the time we got home, it was after 8, and I gave the kids their medicine and put them to bed. We were all zombies the next day and went to bed early again. I think we're almost back to normal.

So, some new stuff going on here:

• We're switching Nate's seizure medication, because I just can't stand to hear him say, "I'm a sad boy" anymore! It breaks my heart! The new medication (topomax) is just a pain because it's sprinkle caplets, but I think he'll be okay because he gets it in a spoonful of pudding!
• He has started kicking Alisa. Not good.
• He is having some potty training success! Alisa is awesome, and she has him pottying regularly. There have actually been a few times when he's told us he needs to go, so major progress! Still a ways to go, but Alisa says if it's nice on Friday, they may try a naked day. (Note: Avoid our house on Friday ... unless you want to clean carpets, then you're welcome.)
• In addition to potty training, Alisa has Nate doing lots of new stuff, like asking for things in full sentences such as "Please may I have some water, please!" :) and climbing into his car seat on his own and buckling up and stepping out of the front door ... lots of independence stuff. LOVE HER. And yes, she is still my laundry fairy and does dishes and is just an all around angel and sanity-saver for me.
• GreenHill gave us a 6 month full scholarship for hippotherapy!!! Whoooohoo! I love them too.
• Georgia's crib now has teeth marks all over it.
• She's cruising everywhere.
• Her hair is growing.
• Her hemangioma is shrinking.
• I'm still really liking my job and getting more and more used to the schedule. And learning I'm going to need to stay home more weekends!

Now off to sleep, because I need it!

Medicaid Mania, part deux

Since I got a lot of questions and interest in the last medicaid post, I'll give some tips here:

1. If you don't know where to start, start by visiting your state's government web site. Mine is kentucky.gov, and every other state has a "state name" dot gov. Texas.gov, Montana.gov, Northcarolina.gov, etc. Once there, I have found it nearly impossible to just navigate around the web sites and land upon anything about waivers, so the easiest way to find something is to just go to the search box and type in "Medicaid Waiver." That should bring up a lot of informations about different kinds of waivers.

2. There are usually several different types of waivers in every state. You might find an HCB (Home and Community Based) waiver, or a Katie Beckett ... there are lots of other names, but those two names are pretty common ones. Read all you can find about the requirements for the waivers before deciding which one or ones you might qualify for. Some are only for adults or only for children, some require an intellectual disability, which most people with Spina Bifida do not have, but up until a certain age, they can't assess IQ level, so sometimes they look at "developmental delays." That can mean delay in walking and such, so that can work.

3. Don't get too scared by language you find that says the child has to be at a "nursing home level of care." These waivers were started to keep children and adults who have special needs out of institutions, which doesn't happen as much anymore in general, and obviously very rarely for SB. So most states interpret this to mean that if you were suddenly hit by a bus tomorrow, your child would need a lot of extra care, some of which might even be medical. Obviously, if the child has a trach, vent, feeding tube, etc, you will easily qualify. Cathing is also one big thing that can help you get qualified--not that you're going to start cathing if the child doesn't need it specifically to get a medical card, lol, but if you are cathing the child, this will help. Otherwise, what they are looking for is the child's delays and how they are not independent (to an extent further than other children that age). He does not use utensils properly to eat, he cannot get in and out of the bath by himself, he does not brush his own teeth, he is not potty trained, he needs help getting up and down the stairs, he needs a lot of help calming himself when upset, he does not play with other children ... things like that. Now, some people might take this too far and either lie or not teach the child to brush his teeth to get the medical card :) but what I'm saying is that it is sometimes in the best interest of the child, even though it doesn't feel good for the parent, to point out every little thing he or she is delayed in so they can fully see the extent of the child's needs.

4. So when you've done your research, you might get a better understanding of the process you go through in your state to obtain the waiver. Sometimes/usually you start with a home health agency or a state agency on aging and disabilities. Your state's web site might offer a list of places to call in your area, but if not, one thing you can do is just google home health agency and your city to come up with a list. Some have web sites, and some will tell you if they work with the waiver program. Others you may have to call up and ask if they work with a waiver program. If they have no idea what you're talking about, they don't. :) But if you know that's the right place to call, simply ask to speak with someone about the waiver program and ask for an assessment.

5. Many states have two options: Standard (a home health agency provides respite workers for you, or you can have the person you want to be your respite worker to apply to work for the home health agency, and they'll only work for you), or CDO (Consumer Directed Option, which means they give you a budget and they handle all the money, but you can hire and fire whoever you want, and you pay them whatever you want ... you make all the decisions).

6. So someone will come out to do an assessment of the child, and you'll tell them all the things I talked about in #3. If the child qualifies, they will take care of getting you the medical card, because you need medicaid to cover the home health services ... making sense now? You may still have to go to the Medicaid office (here, it's called Community Based Services) and provide income information, but for a child, they look at the child's income, not the parents'. Most children of course do not have income, but if you get child support or SSI or have some sort of trust for the child, that could cause problems.

7. Now, there are some states, such as Texas, that require you to actually spend a night in a nursing home to assess whether the child really does meet a nursing home level of care. This seems to be rare. I've heard that New Mexico and Arizon are particularly shoddy in the waiver department. And there are many states, such as Tennessee, that have very long waiting lists. A long waiting list tells me that at least that state is making it easy for people to know about and apply for waivers. Here in Kentucky, if you're one of the few who finds out about the waivers, you can usually get one within a couple of months. Neither is a great situation.

8. Remember, this is a state thing, unlike SSI, which is federal and has the same rules from state to state. So each state has its own rules and programs. Oh, and it was also brought up that, because this is a state-by-state thing, if you move to a different state, you have to start all over again. When we moved to Tennessee for like a minute two years ago, we would have had to move to the bottom of the waiting list. Thank goodness we didn't stay there and could keep our Kentucky medicaid--I would have just died if all that work had meant we'd lose our card after having it for only 6 months!

If you have any other questions, or want me to help you find information about your state, let me know and I'll try to help.

Signed,
The Medicaid Maniac

While Mama's away ...

I LOVE the fact that Alisa and sometimes Blake take pictures of the kids throughout the day and email them to me! Here are some of the great pictures I've gotten since starting work. The comments in quotes are from Alisa. :)

Georgia swinging on our back deck.

"Nate in the sand... Still in pjs. He was all stoked for the park and then went and hid when I got his shoes. Wouldn't budge. He asked for sand, figured since it's bath day, the colateral damage will be small :). We already talked about 'going strait from sand to bath. Clothes come off outside!"

"Your kiddo was being cute."

This is how Blake got her to sleep one day.

"The best smile he would give me."

"Georgia in her zoo cave." (she didn't have sunscreen)

"Drawing a train outside."

"Nate and neighbor kiddos racing"

Nate was driving Georgia to his classroom.

How cute is this!!!!

Singing "She'll be comin round the mountain when she comes!"

"Georgia fell asleep in her high chair waiting for the milk to warm. I guess she wasn't interested in a full belly before nap!"

"Taking huge bites of yogurt all by himself!"

"G keeps catching her thumb between her fingers Between her fingers and it is blowing her mind. She just stares and stares at her stuck thumb and then pries it loose with her other hand."

"Mr. 'No, I'm not napping!'"

Nate used a big boy swing at the park today! Every now and then, he'd say, "Please can you fix my bottom, please?" (Alisa is working on him using full sentences!) and we'd scoot him back up on the swing.

He stood beside this tree and said, "Take my picture!"

"Your house is sacked out!"

"Hungry? No breastmilk? No problem! I can just eat my sock!"

Today I asked Alisa to bring the kids to my office to drop off something I'd left at home and also to feed Georgia. When Nate walked in the door, he immediately remembered the playgroups we've been to there and said, "Where are the toys?! Open that door!" I found him a few toys to play with, including a keyboard with microphone. He asked me to sing him a song. So I started singing "John the Rabbit" from our music class. After each line I'd sing, Nate would say "Yes, Maam." I'd sing "Oh John the Rabbit," and I put the mic in front of his face and he'd say, "Yes, Maam!" Me: "Got a mighty habit" Nate: "Yes, Maam!" Once instead of putting it in Nate's face, I put it to Georgia's mouth, and I swear if she didn't try to sing! It was hilarious.