Friday, March 29, 2013

IEP day

It's impossible to put a child on into words. Or on paper.

I know this. I also understand the reasons that we have to try.

Ralph's IEP meeting was hard. My goal for him has always been full inclusion. But Ralph doesn't give a hoot about my goals, he has his own agenda and he's going to do things in his own time. I'm just hiding out in my room trying to come to terms with that.

The good news is that Ralph's reading skills are average and even above average for typical kids his age. He will be participating in the general ed curriculum for reading instruction next year.

The bad news is that his lack of intelligible speech is holding him back. He performs at a higher level than he tests. Uggh. So other than reading, his core academics will be done in a separate, special ed classroom.

I'm thankful for the extra year of preschool. I think that is why I got a little bit of what I asked for. But, Ralph will not fit into words, or on paper, or percentiles, or standardized anything.

Thursday, March 28, 2013

Big week...aren't they all?

It's a big week here. Yesterday Theo and Max had a day of appointments at the hospital in Kansas City.

We drove up the night before, since our first appointment was at 8am. I brought Ruby with me to help. Funny, eh? Bringing a four year old to help with the six and eight years olds? Ha!

The two boys had their Down Syndrome clinic visit first thing. Three hours, three kids, one room. Thank goodness for the sweet lady with DS who brought us better toys, and more snacks. Max had an 11am GI follow-up, so we had to prioritize our clinic visits. Before I knew it, 11am rolled around. Since we didn't get to see the audiologist, they agreed to squeeze us in at 1pm.

We drew lots of curious smiles as I hiked the halls of the hospital with what appeared to be triplets in the wagon. Pushing the wagon and balancing a lunch tray was tricky, as we grabbed a quick meal between appointments. Ruby chose to eat a cheese stick and chocolate milk for lunch. Theo and Max had tilapia and potatoes.

1pm hearing test. 2pm urology follow-up. Bleh...waiting, waiting, waiting rooms. Thank goodness the kids were all well behaved. That is saying A LOT for Theo, who can really have difficult behaviors when he is stressed. We were headed to the parking garage at the end of the day, when I remembered to STOP AT THE LAB.

By the time our appointments are over, I'm usually racing to the car to get home and I have been known to forget to have blood work done on the way out. I remembered this time. The lady who drew blood was amazing with the boys and Max didn't even yell like I thought he would. In fact, he freaked out significantly more getting his blood pressure taken earlier in the day! Progress!

Today I caught up on some paperwork...well I made some progress anyway. I made two piles, stuff to do now, and everything else. Uggh. On a positive note, I found some items in my pile that I lost last week.

Tomorrow is HUGE. It really deserves it's own blog post. It is IEP time for Ralph. This time around we are planning for his transition to Kindergarten. Ralph's preschool teachers and I have really high hopes for him to be fully included. We've worked hard to help him make it happen. So nervous!

More tomorrow...gotta get some sleep. 7:45am comes early.

Sunday, March 17, 2013

I love March


March. It's been kicking us around a bit!

We had a week of unspeakable sickness here. I was chatting with a friend from Ukraine and complaining about my mountains of laundry. She asked me if I had a washing machine. Boom! Perspective, huh? So, I'm thanking God for my washer and dryer, and also the steam cleaner...or I would have taken the sofa and love seat to the dump.

Ralph and Ruby had the worst of it. Poor Ruby slept on the floor at the foot of my bed for a week. She is looking a little too thin, and still not really eating right, but I finally got her to sleep in her own bed again. Maybe it was the new princess blanket Ruby got for her birthday?

Yes, Ruby had a birthday. She is four years old now. I can not believe it. We were considering adoption when I found out that I was pregnant with her. That set us back a whole year. But goodness! I could not imagine our lives without that little spunky girl! Everything is intense with her...even the way she loves our boys with DS. She is a miracle.

Rose had a birthday yesterday. She is now into double digits! As a springtime snowstorm blew into town the other day, we had a blast shopping for shorts and t-shirts. Then we got to work on my third fabulous birthday cake of the month. Rose gets to visit family in Arizona this week. I'm so excited for her.

Thomas, Jordan, and Ruby helped me take Max to the doctor in Kansas City last week. We stayed overnight, visited some friends, and hit Crown Center for some window shopping. Next time I hope the aquarium isn't sold out...and maybe the crowds won't be so large.

Speaking of next time, I am headed back to KC for Down Syndrome Clinic for Max and Theo. I'm anxious to have these boys carefully examined. Theo has been having a tough time coping with life lately. I found out that he has h. Pylori again, and if that has been causing him pain it might explain his disturbing behaviors. It's tough to care for a non-verbal child, especially when pain is involved.

Just realized that I forgot to share Hammy's birthday!! He's so cool, he requested a bacon cake. I ended up making bacon "roses" for the top and it looked amazing! I now have two eight year olds, Max and Hammy.

I've just scratched the surface here...there is so much going on. Some really exciting things coming up!! Can't wait to share more.

Monday, March 11, 2013

Poor Ralph

Poor Ralph is sick. He threw up on both couches and all over the carpet in the family room on Saturday. I got a nice upper body workout using the steam cleaner!

In the hopes that the bug would not spread (because what sort of nightmare would that be?), I sent EVERYONE else to play in the basement all day long. So far my plan is one else has yet succumbed.

Ralph is not throwing up anymore, but is still feeling puny, so I have planted him in his special bed on the couch. They are always so sweet when sick...

Friday, March 8, 2013

One Month Home

One month. I can scarcely believe that Max has been home with our family for an entire month tonight!

We didn't get a weight check done this week, but Max is up by at least two pounds. Not bad for a tiny guy to gain two pounds in a month! We have 5 more specialist appointments to do this month alone. We are getting things thoroughly checked out right away.

Yesterday was a big appointment. Max got his teeth fixed!

I knew that his teeth were in poor shape. His two upper front teeth were gray. I tapped them one time with a baby puff, causing him to FREAK out. Whenever I attempted to brush his teeth he would clamp down, and cry pitifully. I have never seen a child so orally defensive. Was he in pain? Or traumatized?

No matter, the only way to get his teeth x-rayed and examined would be for him to be sedated. I called several dentists before I found the right fit for us. They were able to get him scheduled very quickly, to my surprise.

The plan was to sedate Max, examine, make a plan and complete the work in one visit. I understood that I needed to pay for the entire visit up front, since the office is not in my insurance network. I would also need to pay for the anesthesia up front as well. I wanted the ten percent cash discount, so I came prepared with $2,000 in my wallet.

The nurse anesthetist was a real pro. He quickly and easily got an IV placed while Max yelled...more angry than in pain. I stayed with him as he became woozy and went night-night in the chair. I was called back a bit later after the exam was complete.

Simultaneously, my heart broke and panic set in as I viewed the photographs and x-rays. The two front teeth were dead with a cyst underneath them, possibly traumatized at some time in the past. The bottom front teeth were "shark"' teeth, two rows with baby teeth in the front that had failed to fall out. The back teeth were cratered, with decay on all sides. Max needed six teeth pulled, eight crowns, two nerve treatments (like a root canal), and three fillings.

The cash in my pocket would not even cover half of the estimated cost. As I looked at the photos, I could absolutely not choose a single tooth that could wait for treatment. Maybe the shark teeth could wait, but that would only save me $900 now, but I'd have to pay another $1000 to have him sedated for a 2nd procedure later. Not smart.

I set up shop in the consultation room and started making phone calls. And praying. And hitting dead ends. And crying. Nose running. Was I doing the right thing? My baby boy was in pain, I had to humble myself and keep trying.

I DID find an angel to loan me an obscene amount of money on the spot. I'm so grateful and oh, so humiliated. The only thing that makes me feel OK about this is that Max is happy today.

One day after having 19 teeth worked on, he is fully recovered, happy and giggling! I'm not sure if he is sore from the procedures or not, but he will be pain free in a day or so. For the first time in years, I imagine. All the dental work is done and we can now focus on teaching him to chew and eat real food.

See how happy he is today! And look at those shoes...Ralph's old chucks. I'm so happy to see him wearing these special shoes.

Wednesday, March 6, 2013

Short bit of news

We are still alive but have been through the wringer here! Can you believe that we ended up with four consecutive snow days...two on the either side of a weekend, making for six long, LONG days in the house with 10 crazy kids.

Since it was too cold for the little ones to go play outside, I pushed the dining table aside, spread out some blankets on the floor, and sent the big kids outside with buckets. They hauled buckets of snow inside for the little ones! Sounds messy, huh? Actually it was much easier to clean up than the mounds of wet jeans, socks, shoes piled beside icy puddles by the front door.

When we finally got everyone back to school and working toward a routine again, the house was gripped by a cold virus. Max caught his first American cold. Poor sweetie. He is scheduled for a sedated dental extravaganza tomorrow, so I hope I don't see his nose running today. That would be a deal breaker.

Dad had hand surgery last week and is in a cast up past his elbow. I came down hard with a cold that same day. We've just been surviving ever since then. If you ask me, it's little early in the month to be weary. We still have a few trips to Kansas City for doctor appointments, and Spring break is coming up.

The good news is that Max is amazing. He is laid back and fun to be around! He seems to be filling out a bit, especially around the jawline. I'm still blown away by how tiny he is. But he is happy and well loved here. That's got to make up for a lot.

Oh, and Hammer had a birthday! He requested a cake with bacon on top. This is what I came up with. :)