The week that Dean left town

Audrey and Abel had their surgery on April 7th.

On Saturday I took Angela shopping for her prom dress.

On Sunday Dean went down to Arizona. His parents own a condo there and that's where they spend their winters. Dean was helping them pack up then help them navigate the airport and fly home.

On Monday morning Angela got up from school very pale and running a low-grade fever. She's had a bit of "Monday-itis" several Mondays in a row, only she is truly not feeling well. (Its very odd and makes me wonder if there is something in the house she's reacting to.) Anyway, I kept her home and she ended up sleeping all morning. About 10:00 Axel's teacher called and said he wasn't feeling well, and neither was his interpreter. Around noon Angela woke up saying her head and neck hurt really bad, and she didn't want to turn her head at all. She also didn't want to wear her glasses, I think because of the migraine. It was time for us to visit Dr. Mary.

On the short drive over Angela started acting very strange. She was moving her hand in front of her as if she was wiping off a window, "My eyes is foggy." she kept saying. I took this to mean her vision was blurry. Then she started talking NONSENSE and doing a weird shaking with her head. I asked what she was doing. "I don't know. I'm shaking my head but I don't know why."

When I got her out of the van we started walking to the clinic door when she dropped to the pavement. I tried telling Axel to run in and get someone to help but he didn't understand what I wanted. After a few seconds she was able to stand back up though I was supporting a lot of her weight. I waived at the receptionist and said, "We're going straight to a room!" and kept walking.

In the exam room we got her up on the table so she could at least lie down. Her temp was still 101 with Tylenol and still she complained about her head and neck. We did some blood work and a strep test, which was clear. However, the doctor looked in Axel's throat and he had a real mess going on in there. He tested positive for strep. Given Angela's history the doctor wanted me to take her to the hospital, and she called ahead to let them know we were coming.

She was in bad shape when we got there. Her blood pressure was down to 60/40 and she was extremely dehydrated. (The ER doctor later told our ped. that we should have been transported by ambulance but her blood pressure wasn't that low in the clinic.)

We ruled out all kinds of things, including leukemia since her white count was at 28,000, in order to arrive at doing a spinal tap to test for Meningitis. Although three doctors had listened to her chest by this point, and all said she sounded clear, the ER doctor decided to do a chest X-ray to rule out a sneaky case of pneumonia.

And he wins the prize!

Unfortunately that hospital had no beds open so Angela was transported by ambulance to the partner hospital. Angela is all about medical stuff, and ambulances, etc so she was thrilled to get a ride!!! When I arrived there a short time later two doctors were in her room. That's when I was informed she not only had pneumonia, but a quarter size "pocket" of something they could not identify. It did not look like a mass, but some type of fluid. They asked if she had been exposed to anyone with TB. They also asked how long Audrey had been home. It was one year last month. Both doctors exchanged looks then wordlessly left the room. When they returned a few minutes later they were fully gowned, had face shields, gloves and booties. They didn't *think* she had TB, but it was possible and they weren't taking any chances.

So let me recap a bit: Angela is admitted to the hospital at what ended up being 2:00 in the morning. I had four kids at home, one of whom tested positive for strep. Dean was out of town. Luckly of all the kids to be hospitalized it was Angela this time. The one who always says, "Just drop me off at the door" and is disappointed when she doesn't get admitted!

As it turned out all the kids ended up testing positive for strep. I had my pre-op physical and begged my doctor for antibiotics so I wouldn't have to cancel my upcoming surgery. Dean came home in the early morning hours on Friday. On Saturday Angela was very disappointed to discover she had missed her prom, and on Sunday she came home.

The final verdict of this hospital stay is this was a bad episode of aspiration pneumonia. Angela's swallow has gotten MUCH worse, and we need to get her back to Boston to visit Dr. Nurko. He is the only doctor in the country who will treat Angela and her Cricopharyngeal Achalasia. The pulmonologist here, who works with people who have achalasia of the LES, doesn't want to touch her because she is high risk. The Pulmo here, who trained under Dr. Nurko and now has a manometry clinic here said no, Angela needs to back to Boston. ASAP.

Insurance says no.

I spent the past week both recovering from surgery and arguing with the insurance provider about getting Angela back to Boston. Guess what I'll be doing more of this week?

Senior Picture Time!

I cannot believe that Angela is a Senior this year. It has been amazing to me watching all of my kids grow up, but I won't lie, watching Angela has been extra special. From a tiny 4 lb baby who wasn't supposed to survive to the beautiful young lady I get the pleasure of hanging out with every day! Thanks so much to Patty Zweifel Photography for taking such beautiful pictures of our girl!

Enough of that, on to pictures!

This is the one we chose for the yearbook

Back in Time

I was having trouble uploading videos to youtube tonight. While I was waiting for things to process I was looking at some old videos of Angela. This is one of my favorites. She was 11 at the time. I love listening to her little voice.

Best Buddies Prom 2014

Preparations started a week in advance with the hunt for just the right dress. I showed Angela several dresses. She chose this one because it was "wine" colored. "Wine" being the important word. They had to shorten it by about 18 inches.

She got her nails done the night before.

A couple hours before prom she got her hair done at the salon. 

FINALLY the time came to get dressed for Prom!!

And then her date, Andy, arrived.

Business, as in busy-ness

Usually I spend the summer getting all the kids medical check ups done so I don't have to do them during the school year. This year several kids need some things done under anesthesia and I was trying my best to get it so each kid only had to go under anesthesia at once, AND so I could spend as little time at the hospital as possible.

That was a fail.

Instead, I couldn't get everything scheduled until this month, and Abel's are all spread out over a couple of months.

So here's what the line-up looks like.

August 29th, Angela and Axel will be having stents put in their tear ducts. Well, Angela is also having reconstructive work done on one eye lid (she's missing both upper and lower ducts on that side) so hers is a little more involved. She had this same surgery done when she was 7 but she pulled the stents out after 2 weeks so we decided to wait until she was older to try repeating it. Two kids but minor procedures so we should be in/out of the hospital relatively quickly. Angela is excited she's getting an I.V. (yes...she loves to have an I.V. Goofy kid!)

September 12th Abel will be having all of his dental work done. Many teeth pulled, some restored, and what's left will be cleaned. I cannot wait to get this done! I wanted to do it a couple months ago but we were trying to get all the specialists coordinated and it just didn't work out.

October 14th Axel will be having minor dental work done under anesthesia. He's petrified of the dentist so this is much quicker. We should be in/out of the hospital in a couple of hours.

October 22nd Abel will be having his tonsils and adenoids out. I am not expecting an easy recovery for him. He'll also be having an ABR (hearing test) done. His hearing appears to be fine but it's good to get this done since he'll be under anesthesia anyway. Unlike my other kids, he does NOT have a high pain tolerance.

We have a couple things coming in November too, but I'm waiting to get the dates.

And Asher? Well he just lucked out, didn't he?

Decisions on Bussing

When we moved here Angela was in 2nd grade. Because the special ed. classroom she attended was not in our neighborhood school, we didn't have an option for her to ride anything other than Special Ed. transportation.

Then Angela moved up to the middle school. She started out on the regular bus but due to some "issues" she was having, I started driving her to school instead. In 8th grade she started back on the regular  bus with her typical peers, which she loved.

Angela continued on the regular ed. bus for 9th and 10th grade. But, at the end of her sophomore year, during the last couple weeks of school, she started making comments about some things that were said by other students on the bus. None of it was serious, at least not what she repeated to me, but it did raise some red flags. I talked to her teacher who talked to the bus driver who had similar concerns and made some changes.

Lets talk about vulnerability a bit. Angela is a 17 year old girl with significant cognitive delays. She rides the bus with near-typical teenage teenagers...lots of them boys. She loves to sit in the back of the bus where the "fun people" sit. Do you see where this could go?

Eventually the school year ended, we moved into summer and I didn't have to think about the bus anymore. But suddenly we're only a couple weeks from school starting. I have huge reservations about sending Angela on the regular ed bus this year. What about her peers from the special ed class? Which bus do they ride? Will she stand out from them if she's riding the special ed bus again?

I asked around. Turns out some of the other parents have had the same fears, only sooner. So, my reservations were validated, and I made the decision to put Angela back on the Special Ed. bus this year. Then I remembered something: Angela could care less what bus she rides to school! As long as A bus shows up to pick her up, she's thrilled.

This year the bus schedule will be awesome! All four kids catch the bus within 5 minutes of one another. We'll be the only house on the street with busses lined up. I think we'll make it the morning coffee stop for the drivers and bus aids. ;-)

A Day at the Office

Axel came trotting out of his room wearing his baseball hat and sunglasses, his toy computer tucked under one arm, a stack of magazines and a calculator in his hands. "Gottago" he said. "GoWork." (his words all run together, probably what we sound like to him.

He grabbed his backpack and quickly shoved everything in. "Bye mom!" he said, and ever so gently gave me a kiss on the cheek. "Bye Papa." giving Dean the same loving kiss.

"See you! Love you. Bye. Have a good day." as he closed the door behind him.

Oh, but this is Angela's favorite game! It is called "Pack a bunch of crap in a bag and hike around the yard!" She jumped to her feet, got her backpack and hollered "Bye! I'm headed to work!" as she ran to catch up with Axel.

I expected they would do as they usually do and head to the back yard. Dean went outside to get something and Axel was at the door of my van. "Papa! Keys please!"

Ummmm......No.

So they settled for driving their pretend car and sitting at their pretend desks on on the pavement.

It wasn't long before Asher joined them. Angela is typing away on her invisible computer.

And there are phone calls to be made.

It's very busy around here in the summer time. By the time I catch my breath in the morning it's time to make dinner. I love it!

Some Days

Some days a kid just needs to sleep.

Last night I picked Angela up from floor hockey practice and I could tell she was just wiped out. He leads a busy day you know. Just like most high school students do. The difference is it takes more than the typical amount of energy for her to make it through her days.

For several years, I think the beginning of 3rd through the end of 6th grade, Angela had a shortened school day. She just could not make it through a whole day. When she was there all day staff spent a majority of their time redirecting behaviors and trying to keep everyone else safe. What we didn't know was she was having nocturnal migraines and daytime and nocturnal seizures. Once we got those things diagnosed she was a totally different kid. The majority of difficult behavior was gone and she was suddenly able to not only make it through a full day of school, but also extracurricular activities.

Unfortunately the last several weeks have been so rough on her system. Her lungs still haven't settled down and her asthma continues to be a major issue. (in fact, as I type this, I'm waiting for her doctor's office to open so oral prednisone can be called in.)

This morning I made a judgement call. Although she was in bed at 7:00 last night, she was still out cold when it was time to get her up at 5:30 this morning. I'll admit I didn't try too hard to wake her up, but as I type she's been sleeping for 13 hours. Something told me today was one of "those" days. Some days she just needs a day to sleep. She might wake up energized and ready for school, or she might sleep a couple more hours and still be groggy. It's a "wait and see" kind of day. Wait and see how she's doing before I make a decision as to weather or not she's going to school. She does have a floor hockey game today that she won't be happy to miss if she doesn't go, but some days....some days she just needs a day to recoup in the middle of the week. 

Old Movies

Tonight I was working on a video project for Cherish Our Children International. While digging around in my account I found some old videos I haven't watched in a long time. I thought you might get a kick out of this one. This is Angela when she was around 9 or 10, explaining the EEG equipment she was wearing. She cracks me up!

Make a video - it's fun, easy and free!
www.onetruemedia.com

What emergency?

Yesterday morning after the kids left for school I putzed around the house, got lights on the tree (it  might even get ornaments tonight!) , then Asher came home for lunch. When that was done I put the dogs away, started the dishwasher and at 1:00 we headed out the door to pick up Axel for therapy Tuesday.

Angela came home at 2:40, and as she always does she went to the basement and turned on the t.v. A few minutes behind her at 3:00 Dean arrived home. He sat down and thought, "Where do I hear water running? A LOT of water!"  He went to the basement and found a pipe had burst and there was 2 inches of water in the pool table room. As he ran to see what was going on he passed Angela who didn't really seem bothered by the fact she was sitting in water!

Seriously????

When the boys and I came home at 4:30, Dean had sucked up most of the standing water, but the carpet...ugh!!! I used the steam machine to suck up as much of the water as I could.

While doing that it occurred to me that we had missed a step in teaching  Angela about being home alone. She has a cell phone and we have talked about "emergencies" and what kinds of things she should call mom for. Angela is very literal, and I am pretty sure that "flooded basement" was  not on the list of emergencies we discussed.  I just didn't think to include that in our discussion! What was I thinking???

Then I started to think of the "what if's". What if the cord for the TV had been in the water...and Angela had walked in it? I started to think of all the other things that could have happened, or could happen in the future, and got a bit freaked out. Mostly when Angela is home alone she either watches T.V. or watches videos of her youtube playlist. She knows not to answer the door (won't even let Dean or I in if we come home unexpectedly and knock on the door!) She knows if she comes home and for some reason can't get into the house she should call me or go to the neighbors. She knows some other stranger related emergencies which warrant a phone call and other actions. Apparently she does NOT know that just sitting in a puddle of water, all in the name of watching her beloved T.V., isn't really a very good idea.

So, it's time to backtrack a bit and reteach the "home alone" thing, going over all the possible scenarios. I don't want to leave out any possibilities!

SOMEbody....

Tonight's conversation at dinner:

Angela: (never taking her eyes off her plate) "Somebody was in the kitchen in the middle of the night.

Me: "Really? Who was that?"

Angela: "Somebody came upstairs and drank all the pop."

Me: "All what pop?" (seriously? we had pop?)

Angela: "Somebody drank all the orange crush. Threw it away.

Me: "Really! And who did all that?"

Angela: "Somebody got up and ate Oreo cookies."

Me: "Who would have done that? Do you know who did?"

Angela: "Not me."

Me: "Angela. Who came up stairs, drank pop and ate cookies in the middle of the night?"

Angela: (Looking me square in the eye, trying to decide if it was worth it or not.) "I did. I drank the pop  (gesturing toward the fridge.) I ate the cookies (gesturing to the drawer where they're kept.) Then I threw the bottle away and I went to bed."

Me: " Angela, I'm glad you told me about all of this. It's important to tell the truth to mom. But Angela...you cannot wander around the house in the middle of the night. You cannot eat food in the middle of the night. If you need to get up to get a drink of water you can do that in the bathroom downstairs.

Angela: "Ok mom."

Somehow I have the feeling we'll be having this conversation again very soon!

Soccer

Angela has just finished up the soccer season. She plays on the high school adaptive JV team. This is her first year playing soccer and she really loves it!

Angela has always been her own best cheerleader! Gotta love her enthusiasm.


She spends the whole game running...and running...and running...mostly in circles headed the general direction of the ball. She's usually about 15 seconds behind it. If she touches the ball she cheers for herself as if she's just scored the winning goal. (she's #6)


At half time Asher likes to go run around on the basketball court, and visit his favorite friend, Zack.

In two more years Axel will be be able to play. He can hardly wait!