9/30/09

Long Overdue Health Update

Overall S has been doing very well. We’ve made some changes recently that seem to be helping.

Her health picture right now:

Asthma – S still needs occasional breathing treatments when she gets the slightest hint of a cough. Usually nighttime is the worst for her, so for a while we were giving nebulizer treatments before bed and that seemed to reduce the nighttime coughing fits. The move from a carpeted room to one with hardwood floors was a great one for her. She used to wake up multiple times coughing at night in the carpeted room and that has been reduced to once or twice a night. We are all sleeping better as a result.

Reflux – This problem is pretty bad right now. For a while after eating or drinking S would burp incessantly. Honestly for a while I thought she was mimicking M (Sorry Honey). But then it occurred to me (rather slowly I might add) that her coughing fits were at the same time every time. So either she has the most regular sleep cycle ever, OR the reflux was back. Her pediatrician put her back on Zantac for a while and we will be having a follow up with the gastroenterologist to see what our options are. Thankfully S seems to be going much better medicated. Hard to tell if her coughing fits are better because of the move to the new room, or both…but either way the constant burping has stopped. Her reflux must have been bothering her because after being on meds for a few weeks we missed a dose and she actually spit up – something she hasn’t done in months!! Poor girl. Her pulmonologist thinks that she possibly has airway/lung damage from all of the reflux and wants to do a bronchoscopy at some point. Problem is, no one is willing to put her under general anesthesia to explore this further. Fine by me (for now).

Neuro Issues: The results of all of the testing that we had done this summer were inconclusive. She is not having seizures and the MRI showed no tumors or lesions on her brain. Our neurologist said that she has additional fluid on her brain in the lower back portion but that it wasn’t causing any issues. Essentially the benign hydrocephalus that she had as a baby never fully resolved itself but did not increase. Her neurosurgeon said he didn’t see anything –but I didn’t argue with either one of them. I have learned to take each doc’s opinion as a piece of the puzzle, even if they don’t fit. I’ve also realized that medicine (especially with mysterious medical issues) is mostly just a guessing game. Frustrating but true.

Genetic Testing: S’s neurologist sent out her blood for genetic testing in July and we have yet to receive results. There is a company called 23andme.com that sells kits to do genetic testing and then is compiling information into a large database. I am curious to see if S’s results can be entered into this database to try to identify predispositions or patterns. Since we don’t have that much information about her birthparents, getting an overall picture would be fantastic.

I had hoped by the time that I would write this update that we would have some clear cut answers, but we don’t.

What we do know:

  • S has elevated lymphocytes and a large quantity of abnormal lymphocytes.
  • Her other liver enzymes have returned to normal. However, her alkaline phosphatase levels have been elevated for more than six months.
  • She continues to be bothered by asthma and allergies. If I do not dust her room multiple times a week, her sleeping is severely affected.
  • Her energy has greatly improved since the last time she was in preschool. This is in part to better sleep at night, overall increase in health, and the fact that if she is showing signs of fatigue, I keep her home and let her sleep (one of the benefits of working from home).

I would be lying if I said I wasn’t concerned about the Flu this year –especially since so many of my friends (not local yet) have the flu (H1N1 or Infl. A). We’re all getting our flu shots this year (not the H1N1 shot though). I’m meeting with her pediatrician next week to come up with a plan of action should S get the flu. Last year’s flu shot did not prevent her from getting the flu and that was what sparked a 5 month decline in health. We are hoping for better luck this season, but are realists. She is in preschool fulltime – surrounded by other snotty kids. It’s spreading quickly. If we do end up with the flu – I am pretty certain that we will have a good plan in place.

We are also meeting with her pulmonogist and pediatrican to discuss some preventative things we can either do or take with us on our trip to Germany in December. I’m not sure if they’ll give us Tamiflu to carry with us, but in a case like S’s – it would be better to have that on hand. We also travel with antibiotics for ear infections, UTI’s and respiratory issues. We also bought travel insurance for this trip just to be safe. You just never know.

So that’s where we stand.

We’re still a bit on uncertain ground, but things have settled down enough to catch our breath. We haven’t been to the pediatrician in three weeks now and just had our first trip to the ER in 4 months a few days ago (nothing to worry about, just blood work.) With any luck, I won’t have to write another health update for a while.

Positive thinking, right?

9/28/09

Look What She Can Do!!

S has been developing like crazy lately. Here are some videos of what she can do now. She knows most of her shapes. For some reason, she calls the rectangle a choo choo train. Too cute!
video
She also can count. I've heard her go as high as 17 without missing. I only caught the tail end of this one. Hope to catch the whole thing soon.
video
She's in love with the Fresh Beat Band from Nickelodeon. They show their videos on demand at the beginning of Dora and other Nick shows.
The problem? The segments are only 1.5 min. long.
The solution? Teach S to press the rewind button herself.
Taa Daa!
video

She knows all of her colors in English and in German. She confuses yellow and blue sometimes but usually on purpose with a sly smile.

She knows the ABC song, which I'm still working on capturing. She can recognize A,B,C,E,H,I,S,T,V,X,Z.

She amazes me.

9/19/09

Playing Musical Rooms

So about six weeks ago we I decided to move things in our house around.

S's breathing troubles seemed worse and I felt that she needed to get out of a carpeted room and into a room with hardwood floors. Now as I'm writing this, I could have just laid new flooring in her nursery, but honestly - I didn't think of that until now.

If there is a harder way to do something, or a more convoluted way - I usually find it.

So S's room was getting moved into our existing office. (next door) She needed a "Big Girl" room near the bathroom. But before we could do that, we had to move the office somewhere. Due to an airconditioning issue (proximity to the air handler), our master bedroom has always been about 10 degrees warmer than the rest of the house. In the summer in Florida, it just wasn't fun. So for years we have been moving into our guest room (closer to the air handler) in the summer. The guest room has always been the nicest, coldest room in the house. Seeing as we usually only have guests in the winter - we decided to move the guest room into the master bedroom and the master into the guest room.

So if you are following: S's room to the office. master and guest room swap.

Because of the large size of the master bedroom, we also moved the office into the master.

So: S's room to the office. The office to the master. The master and guest room swap.

S's former nursery became a play room, so I could get her junk stuff out of the living room. She loves having space to play and often goes in there, says, "Bye, bye" and will sit down and color for a few minutes on her own! Pictures are coming soon. Apparently I didn't have the camera battery charged.

But here are pictures of S's new room.

Office Before:

Now S's Room.

I had a blast painting the murals. I painted them on posterboard and attached them with these, so they are removable and won't damage the paint. Also I wasn't exactly sure where I wanted them so I'm so glad that I made them movable. I think I still need to add one more to the right of S's name - I'm thinking maybe a tree.

closeup of Lion mural

inspiration for lion mural

curtains, chair and monkey mural

closeup of monkey mural

inspiration for Monkey mural

bedding

matching artwork

I'm a bargain shopper, so I found towels on clearance at Target and am redecorating the S's bathroom too. I found the discontinued shower curtain, and hand towels on eBay. I'll post pictures of that room too when they arrive. Since we can't move - rearranging the house has made it feel brand new! Okay, maybe not BRAND new, but at least a little different.

9/8/09

Homework at 2????

Yep, they start 'em early in these here parts! Homework at 2! Seriously. Shape tracing, coloring AND handwriting practice. Watch the video for my little ambidextrous girl. Too cute! She is saying down, down, down because that is the handwriting stroke that they are working on right now. As a teacher, I totally know this is developmentally INappropriate. As a mom though, I'm so proud!!

video

9/3/09

Good News/Bad News

Good news , I have been hired for two online adjunct teaching positions in the last week. Yeah for working at home and yeah for having an income!! I am so happy and will have to write more about this.

Bad news, we bought a brand new car last week. A 2010 Toyota Sienna and love it. But there were some scratches on it when we got it, so we took it back to be fixed. Long story short, there were new scratches now that weren't there before. WORST. CAR BUYING. EXPERIENCE. EVER. More on this if I am legally allowed to discuss it, but lets just say we ended up having to call the police to come to the dealership. M and I don't really get mad often, but this was the most angry either one of has EVER been. So unhealthy and ultimately fruitless (as of tonight) and a good reminded why we don't buy cars often.

More soon.

We are hosting a garage sale on Sat morning (if you are in the area, come on by) to raise money for the adoption of our son to be. That, along with job training has kept me off of the blog this week. Will hopefully be able to finally get to the promised posts next week.

Have a great weekend and wish us luck in our fundraising on Sat.