Life With My Special Ks: An adoption fundraiser giveaway!!!!

Life With My Special Ks: An adoption fundraiser giveaway!!!!

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DIY DISH from YCMT

So, I really need a new sewing machine like I need a hole in the head! Haha! But, I could sew on one and embroider on the other and get twice as much not done as before!

Seriously though, I love "You Can Make This"! I use their patterns almost exclusively and have created so many outfits for Maeve that I could never find in the stores.

So, if you are crafty, visit and see what all the DIY DISH is about!

Missing in Action

Yes, I have been missing in action...

Long story short, I haven't been to the doctors since my daughter, Maeve, was born. Three years ago...

Why? Because my insurance ended a few months after that.

And I am not one to take from the system - I don't believe in it. In my opinion, health care is a privilege, not a right. I know this would greatly distress my relatives who tried their hardest to raise me "left"...

News flash - I belong to the "evil, right" - the Dark Side!

Anywho...
I have health insurance again, since I had the privilege of marrying my hubby. So I finally went to the doctor.

Bad idea. Now I know how old I am. Those stray silver threads in my hair are nothing compared to the wake-up call of visiting your friendly PCP.

I have been having terrible pains in my hands, predominately my right. And it has been getting worse and worse. I mentioned that along with my laundry list of aches and pains and complaints. I mean, I am falling apart at the seams. Forget my exploding head (Glenn Beck-ism), wrap the rest of me in duct tape!



Turns out I have carpal tunnel. Ah-ha! I should have seen that one coming!

So, I have been trying to not do anything that aggravates my hand - typing being one them. My excuse for being MIA.

Or maybe I should say Away Without Leave... oh wait, that is a another post all together...

Frequent Flyers

One evening at our meeting for the Family Forum at Children's Hospital of Pittsburgh, one of 2 board positions I hold, the suggestion was jokingly made that we should distribute frequent flyer miles. Everyone laughed, but I know that all the parents on the board where secretly thinking, as was I, "Hmmmm, wonder what we could get with those miles?"

If you are a parent, you no doubt have made frequent visits to your childs pediatrician and have probably made one trip to the Emergeny Room. But if your child has special health concerns, the number of visits to doctors might be triple that of a "well" child. There are months on my calendar that hold one, sometimes two appointments a week - I have appointment cards paperclipped to future months as a reminders of all our upcoming appointments.

And because we live in Pittsburgh, we are lucky enough to be in the shadow of one of the top pediatric hospitals in the country, Children's Hopsital of Pittsburgh (CHP). And we really are in the shadow of the new hospital - we can see the buildings from our front porch. Almost all of Maeve's doctors are exclusive to CHP and we see them all on the main campus.

Hence, we are "Frequent Flyers" - hospital staff know Maeve by name and remember when she was a newborn. Boy, the milage we have after only 3 years.

So, yesterday, Maeve had her surgery day.



And her lungs were clear, so everything was a go. She was only in the OR for about an hour from start to finish. We were at the hospital at 8:00AM. They didn't take her back until almost 11:00AM. We saw the surgeon a little before noon and they got good samples for the biopsies and they repaired her incision. Sean left to go to work. They didn't take me back to recovery until almost 1:00PM. Maeve was not happy and was holding her tummy and whimpering - her incision repair was hurting. So they gave her some happy drugs and she fell back asleep. Around 2:00PM we moved to the step down and as soon as Maeve drank some juice we could go home.

Well, she drank some juice and then projected it across the room. Very unladylike if you ask me. So she fell back asleep and then we tried again with the juice. Same response. So around 5:30PM we finally got her something for the nausea and Maeve fell back asleep. When she woke up I convinced them to let her have some Pepsi, not technically a clear liquid, but she likes it. And see drank it. Yipee!

Finally, around 7:30PM we were allowed to go home. 12 hours in the hospital. Not my idea of fun. But we survived another trip. Only to prepare for another one... sigh...

This morning Maeve had a CT scan of her sinuses and then a consult with our ENT. She had her first sinus infection a little after her first birthday and they have been getting more and more numerous and harder to treat. It seemed that this year she had one a month, and as soon as she ended her antibiotics it would start all over again. This summer she was sick off and on from July to September and then she has been sick continualy since the first of November. She only had 5 days she wasn't on anitbiotics.

So, back to the CT scan. First of all, they are really cool. Tissues are grey, bone white and air is black. It was like putting your head through a bread slicer, Dr's words not mine, and seeing each "slice."

First we see the tip of Maeve's nose and then her mouth, the 2 missing teeth that are coming in way back behind the others (that's a whole other story), her eye sockets... and then her sinus cavitities.



As an adult you have four sets of sinus cavities. Young children only have 2 that are developed, the ethmoid and the maxillary sinuses. Your sinus cavities are filled with air and when you get a cold or infection, the tissues swell and you feel pressure in your face and nose, you become congested, your eyes water and boogers gather for a party (my words not the doctors).

So, in a disease free sinus CT scan, those cavities should have presented as black areas. Maeve's left sinuses were completely grey and she isn't even showing signs of infection currently. There was no air anywhere in either left cavity. The right side wasn't as bad. Her ethmoid sinus was only partially obstructed and her maxillary sinus had one little pocket of air in the middle. For someone so young, there was a lot of sinus disease.

Our options aren't great. We can keep doing antibiotics, but that isn't a long term solution and can lead to other problems. We've tried saline washes - if you ever want a fun night, borrow a toddler and squirt salt water up their nose. We have a script for steroids, Nasonex, but even that will only reduce the swelling so much. We might have to squirt an entire bottle up there to see any results. The Dr suggested a script for 4 months in Flordia every winter, but was pretty sure insurance wasn't going to cover that. Darn. And we have endoscopic surgery.

Part of the problem is blamed on Down syndrome. Our kids are known to have tiny insides - Maeve has the tiny ear cannals and tiny tear ducts. And we now know where her tear duct problems are coming from. We knew the structures that open and close between the sinus cavities, turbinates, were occluding her tear ducts because they are normal size and her tear ducts are tiny. And with all this swelling, it's any wonder she was constantly tearing up. Now we can blame her tears on the chronic sinus infections.

So, we are going with the surgery, even though I have a lot of reservations about it - mainly because of the anesthesia. The anesthesiologist made a comment about going under "too much", although we - the staff at CHP - want to give Maeve all the advantages possible so that she isn't having to deal with illness and delays. I don't want my child to have any surgeries, but what can I do? I want her healthy, I need to know some answers to some of her health mysteries. And until they invent a way to do tests non-invasively, she has to go under for some of them.

I'm thinking that this next trip might get me enough milage for a flight somewhere warm... a frequent flyer can always wish right?



PS: I completed W2D2 of C25K this morning - got to look good for that trip to the beach : )

Paging Dr. Maeve

Aaawww, our little Dr. Maeve! Pretty cute huh? You would think a kid who sees as many doctors as she does, would not want to play "Dr", but she loves to! She puts on her white coat and stethoscope, grabs her light and shoves it in your face and says "aaaaaahhhhh."

Honey, the patient is suppose to say that.

So, I don't plan on always writing about Down syndrome, but I guess it kind of comes up today in a round about way. Why? Because we are scheduled for surgery number 10 tomorrow - 10 in 3 years. And although they have been for things any kid can have, kids with Down syndrome seem to hit the lottery and get them all!

10 surgeries - Seems like a lot, huh? I know there are families who have dealt with more than that, but it's a lot for us. Too many personally.

They are doing biopsies for hirschprungs and then they are repairing her abdominal scar from her very first surgery at birth. Seems those dissolvable stitches didn't dissolve and the incision has holes in it and they keep getting infected. Started happening before her 2nd birthday. Called the surgeon and you know what they told me, "put warm compresses on it."

I very politely asked them if they were coming over to sit on my child to do this and prescribe drugs and ear plugs for me and the neighborhood. Anyone who knows Maeve, knows she does not sit still - ever. Even with chips, Pepsi and Caillou on the TV, she is always wiggling about.

So she is now three and the problem persists. It's all minor , but Maeve has a floppy airway, tracheamalacia, and has to be fully sedated with a little breathing tube in her airway. So it becomes a little more complicated.

No wonder I am going gray, much more so than I ever use to be.

And the fun doesn't stop there. Thursday she has a Ct scan of her sinuses scheduled and then a visit with the ENT. She has been battling sinus infections since a little over the age of 1, and they keep getting worse. They wanted to wait until she got a little older and hope that she would "grow" into them, before doing anything drastic.

So they will take a look, and if they are still tiny, they are planning on going in and making them bigger. Not sure how you do that, not sure I won't to know either. Sounds really painful, I know that. Thats the "drastic" part.

So, I'll be taking bets on whether number 11 is in the cards... hopefully not, but we aren't that lucky. If we were, we would have won the Powerball months ago.

Monday, Monday

What does a Pittsburgh housewife do on a Monday you ask? Let's see...

Get up at 6:50AM and realize it is still dark outside,so you can't possibly get out from under the 2 blankets and 1 quilt to go out and run in the 10 degree weather.

7:20AM is now light out. Get up and get Princess Butterball who has been up since before 6:00AM. Go potty, plop her in bed with Daddy and then put on about 3 layers to go out and run in still 10 degree weather. At least it was not snowing.

7:40AM start uphill. Complete W2D1 of C25K, 2.32 miles with an incline increase of 118 feet. Got to love living on a hill. Always have and always will.

By 9:00AM, breakfast is eaten, showers taken, 2 cups of coffee drank, numerous emails sent out as I start planning for the 2010 Buddy Walk(r) in October.

Color with crayons, color with markers, dress dolls, have a tea party, play candy land, play soccer in the house, have a kazoo parade and then make lunch.

Maeve takes a nap, Sean leaves for work, and I now have about 7 loads of laundry to do, more emails to send, gotta hang on facebook, check out ebay and have another cup of coffee all in an hour and a half.

4:00PM start lasagna, read books, play doll house and watch the news. Eat dinner, do dishes, fold laundry, vacuum, have snacks and before you know it, it's 9:00PM and time for Maeve to go to bed. Get her school things ready, do more laundry, realize I didn't blog yesterday and here I am. Typing away and waiting for my Officer to come home.

Pretty boring huh? Nothing like the Real Housewives of Orange County or Atlanta or wherever. Nothing glamorous here. But I do have two people at home who love me to pieces! I think that is probably the best of all!

Guinness is good for you

Enough said.

Snow

My friend Stacy lives in Northern PA and probably sees a lot more snow than we do in Pittsburgh. A day or so ago, she wrote about running in the snow. I was so inspired, or maybe lack of sleep was leading to impaired judgement, that I decided to run outside this morning.

It started snowing yesterday at 4pm and only stopped sometime after midnight. The weatherman said we would get sporadic snow shoers today - well, it has been snowing sicne 7am and hasn't stopped.

I woke Sean up and told him I was going to run outside. I think he thought I was joking. Then when he realized I was serious, he told me to take my phone.

"But I have no pockets."

"Take it and carry it. You'll need it when you fall on your ass and I have to come pick you up."

So much for the vote of confidence. In his defense though, I am clumsy. It has gotten worse over the last few years, and he sees me fall, stumble, drop things and walk in into walls and tables on a daily basis. So I guess he was justified.



So I headed out. Now, we live on a hill, a big hill. And of course, as I didn't want to finsh with coming back up the hill, I decided to start by going up the hill. In 4 plus inches of snow, because some people never clear their sidewalks. And it was snowing, and very windy and cold. And my nose was running.

I did my last sprint and my cool down coming back down the hill. It was much more difficult than running in place in the house. The tundra conditions didn't help much either.

But I did it! W1D3 of C25K completed!

And I'm proud of myself! I think I will try sticking with the outdoor runs.

And I didn't fall - almost twice.

Good Behavior

Yes, I reward for good behavior. But how does one resist that face? You don't.

Maeve had an 8:00AM appointment at the allergist this morning to rule out allergies as a contributing cause of her 3 months plus of lower and upper respiratory issues. Good news, she is allergy free. Bad news, it is more than likely anatomical and depending on what shows up on her CT scan next week, could require surgery. That would officially put us at #11. Yikes!

But I don't want to turn this into a negative post, so I am going to brag a little on Princess Butterball's behalf.

- Maeve finally figured out socks - how to put them on that is!
- We are working on her shoes, she can put them on and velcro them, but she often puts them on the wrong feet and doesn't pull them tight, so we fall down like a drunken sailor.
- We are "writing" our name - okay, not really, but Maeve is fascinated with her name. She can recognize it and loves to have you write it over and over again. So, now, she takes her doodleboard and will make a row of nice little horizontal lines and say "da, da, da, da, da - yay! For those who don't speak Maeve-ese, that is "M,A,E,V,E - Yay! I did it!" She makes really good lines and circles too.
- And a big one, she can go upstairs, undress, go potty, clean-up, dress and return to terrorizing me, all by herself!

I feel bad a lot of times bragging about what Maeve can accomplish, but I like to think it will give others some hope and inspiration instead of making them feel bad that their child might not be there yet. Trust me, I have my pet goal that we are not at and it tears my heart up everytime I see a related post. So help us celebrate Maeve's good behavior - maybe I'll send you a cookie too!

C25K the Newest Craze!

If you hang out on Facebook maybe you have seen posts about C25K. I saw a random post that a friend of a friend of a friend joined the group. I was curious and clicked on over. It is a 9 week training program to start you from your couch to running a 5k in 9 weeks. Sounds like fun, huh? I am not a runner, but I am going for it. Follow the link to OperationC25K and read the story there - talk about some inspiration. And the great giveways!

If you are interested in the program it can be found at CoolRunning.com and there are free podcasts on itunes set to music for your MP3 and ipods.

Tomorrow is W1D2 for me - wish me luck!

The Little Known Diva in Me

Anyone who knows me from back in my high school days will tell you - I was no Diva. I readily admit to being nerdy and not part of the in-crowd.

So, just to play catch up for those just joining me, Sean and I were married this past September. Only took us 4 plus years and Maeve turning 3, but hey, better late than never!

I planned the wedding in under 5 months and did a lot myself as far as gifts, decorations, invites etc. But my favorite things were some of the little things that made our wedding unique. And our photographers were a big part of that. It rained on our wedding. I mean it poured. But to look at our photos, you would never guess that. But it did afford me some fun and a chance to show off the little known diva in me!

Welcome 2010

2010 - a new year is here. I didn't make any resolutions, but I have some goals. One was to attempt to maintain a blog of all ramblings. There are a lot.

I also wanted to start working out again, so I started the Couch to 5K running program. I am not a runner, so this will be interesting. I do workout, so it is not so much the getting in shape that will prove difficult, but the challenge to finish something new and actually run a 5K. Without my knees giving out too, I should add.

Today, I completed w1D1 and it didn't kill me, so that's good. I do however have to get better running shoes - good excuse to go shopping.

So, it's not an interesting first post, but if you read it - thanks! I needed that!