Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Thursday, July 30, 2009

Painting Nails

Dean and Angela had fun painting nails! She won't let ME do it, but she'll let Dean or her dad's girlfriend do it. Go figure! (sshhhh don't tell Angela, but he's actually painting her nails with the icky tasting stuff that stops her from chewing on her fingers!) 




it's boring around here!

Not much new and excited to post about here. We're waiting for the state to give us approval to travel out of state for medical care. It involves lots of correspondence between our doctors at Mayo, doctors here in MN, and the doctor in Boston. I'm not sure how long they have to give us a decision, but I'm guessing by August 15th, or so. That means we'll end up scheduling into October. Shoot!

In other news, I'll kind of be offline for a few days...it's possible weeks, but I doubt it. LOL I'm having major surgery on August 7th. And, while I'll be recuperating in the recliner in the living room, there won't be a whole lot to tell! Angela will be going with her dad for a week in the semi (this is the 2 year mark for the big crash) She leaves the day before my surgery and comes home the following week. Then, since Dean has to go back to work,  I have a PCA staying with us for several days to run Angela around to all her stuff, and generally keep her from harassing me, and body slamming me like she does in her exuberance to give me hugs! Angela can hardly wait for me to have surgery, since it's her opportunity to play nurse for REAL! LOL

In the dog world, we're expecting A PUPPY on September 1st. (yes, that's just 3 weeks after my surgery.)  Notice I did not say "a litter of puppies", because that would be too good to be true. No, instead our Zurri, as far as the ultrasound can tell, is only expecting ONE. Some might say, "Well, at least there won't be much work involved!" Which is so not true! First, in large breeds, a singleton usually gets too big, resulting in a c-section. Can you count up to $3,000?  Then, one puppy is MORE work than a litter, because you have to teach him the things his litter mates would normally teach him. I become puppy preschool. The things that ARE easier is clean up! One puppy doesn't make anywhere NEAR the mess that 8, 10, or 14 puppies do! LOL We're hoping the ultrasound was just on the early end so we weren't able to visualize more puppies yet. We have had them done on other dogs, only seen 4 or 5, and then had a HUGE litter. So we're praying! We at least need a number to cover the expenses (and avoid a c-section) And, the profit from the litter was going to pay my trip to Bulgaria. So...6 puppies would be a minimum that we need. (Did you happen to hear that, God? S.I.X. Not that I'm making demands or anything!)

What else....hmmm.....We have a BIG family reunion coming  up very shortly. This will be the last one on my dad's side. At 73, he's 3rd youngest of 11. Out of all those kids, 9 are still living. He lost one brother as a teenager, and my aunt Mayme died 3 years ago. The oldest sister, Rubee is 98 (I think?) and still going strong. Anyway, it will be good to see relatives I haven't seen since Angela was 8 weeks old!

I have been getting emails about my other blog, as it's now set to private. You'll have to contact me with your email address if you want access to it. You can contact me at deanleah at comcast dot net.

Saturday, July 25, 2009

Weeeeee

Angela and I on the ferris wheel at a local carnival.

Friday, July 24, 2009

The Forecast and rot

The forecast is the thing I'm supposed to check BEFORE I tell Angela we're going to a carnival today! You'd think I'd know this stuff by now.

The "rot" is because that is what all my dogs smell like, and why I'm going to spend most of the morning bathing all 4 dogs!!! (for those who don't know my dogs, that equates to about 6-8 hours of grooming!!!) Apparently there is something DEAD in our yard. UGH! And, it's pouring out so I'm not going out to find it. Finding it should not be that difficult though. All I have to do is walk around outside and the dogs will point it out to me. Then I will show Dean where it is so he can get rid of it. LOL

Thursday, July 23, 2009

More from Mayo, and "stuff"

*For those who haven't been following the story, you might want to read HERE First, starting with June 25th when this whole mess blew up!

So today was our long-awaited appointment with the pediatric neurologist. We saw this same neurologist (along with a neurosurgeon) when Angela was just a baby and first showed evidence of a stroke. He's very nice, (And Gail, he has GREAT bedside manner AND even has the appropriate lingo down. LOL)

So first we went over the current issues. The seizures (new this past spring) the achalasia (that's been there for years, we just didn't know it was this bad, and how the GI dr. is convinced she's had a brain stem event because of the type of achalasia she has.

He did her neuro exam, and then we finally got to talk. I didn't really expect to learn much on this visit, but rather ruling out that she's had anything NEW happen. And, I was pretty much right.

First, he was impressed with how well she IS doing. He said what I always do.."You would never know by looking at her that her body holds all these secrets!"

We do have her very first CT scan done when she was 5 months old that shows a nickel-sized "shadow" on her brain stem. It could be just artifact, or it could be there was really something there. The brain stem is the most difficult area to study, of course. He doesn't feel that running any more tests would be beneficial unless there was something NEW going on...and there isn't. What information we *might* find would not alter what we're doing or planning to do for treatment. Based on her symptoms, and the swallow studies and old scans, he agrees that there was probably a brain stem event at some time, BUT..she did NOT have any problems swallowing until sometime after her nissen at 11 months old, and as far as we know didn't have problems stacking food in her esophagus until she was around 3, so he is guessing (and that's really all he can do is guess.) that this event happened sometime in toddlerhood and NOT at the initial stroke she had around 4 months old.

He's glad her seizures are well controlled with meds (as are we!) and says her left sided weakness is just has her regular neurologist describes: Very subtle...it's there, but if you weren't looking for it you might not find it. It is evident in her eyes as well, but today is the first time I've been told that. Also, her reflexes in BOTH legs are very minimal. Oh..and here's another odd thing. Just a couple weeks ago I told Dean "You know, I don't ever remember her commenting on smells." Like if you pass a dead skunk, or any other types of odors, she says nothing about the smell. Then like 2 days later she DID comment about a smell, only I didn't smell a thing so I think she was just talking to her herself talk.

Well, today he tested her sense of smell, and held up stuff right to her nostril. She SAID she smelled them, but he told me afterward that the smells he was holding up were VERY strong and should cause her to wrinkle up her face or turn away. She gave no reaction at all. Interestingly, that goes along with TIA's, which Angela has been having off and on for several years now.

So, we didn't find out anything exciting, but it was interesting to hear his perspective, especially about the sense of smell. Hmmmm....Anyway, we're hoping to be in Boston to see Dr. Nurko at the Pediatric Esophageal Motility Clinic sometime mid-late September. If the motility testing shows that it will be beneficial, she'll also have an endoscopy w/botox to the upper esophageal sphincter while we're there.

We are STRUGGLING with the soft diet. UGH! She's now started foraging the house for stuff because she's craving crunchy things. I think she's also going through a growth spurt (or is incredibly hormonal) because she's eating constantly.

Camp went very well. I did get a call on Weds about an incident, but they just wanted some insight as to what triggers the type of stuff they saw. I laughed, and said, "Wouldn't we all like to know?" Unfortunately sometimes her behavior is neurologically based, so it has NO purpose. It's not communication, it's just THERE. (other times there is definite will behind her behavior!) There is no predicting it. There is no trying to catch it before it happens. It's impossible, because there IS no trigger. That's the TBI (traumatic Brain Injury) component rearing it's head. The rest of the week she was just fine, and there were no further incidents. She LOVED camp, and can't wait until next spring when she can go again!




Tuesday, July 21, 2009

Cool Beans!

Hey, check out this cool pack you can win! I think this would be AWESOME in car in Minnesota during the winter. Never know when you're gonna get stuck in a snowstorm in subzero temperatures. Go here to find out more details. 

Saturday, July 18, 2009

Mom Jeans

Killing off Barney


Angela is 13, so she outgrew Barney years ago. Then a couple of years ago I ran across a Barney doll in the storage room, and decided he'd make a good toy for the dogs. They always destroy stuffed toys within a couple of days, so I thought for sure I'd get the pleasure of watching Barney's demise. 

Much to my surprise, Dudley has adopted Barney as his own. He's always carrying him around, and it's the only stuffy the dogs haven't shredded! Probably because he's always in Dudley's mouth!

When he's not carrying him around, Dudley uses him as a pillow. 


Dudley also likes to share his Barney with everyone. He thinks everyone should have a Barney to love!

Thursday, July 16, 2009

Just messing around

messing around with blog layouts tonight! LOL

One Flaw in Women

One Flaw In Women

Women have strengths that amaze men.

They bear hardships and they carry burdens, but they hold happiness, love and joy.

They smile when they want to scream.

They sing when they want to cry.

They cry when they are happy and laugh when they are nervous.

They fight for what they believe in.

They stand up to injustice.

They don't take "no" for an answer when they believe there is a better solution.

They go without so their family can have.

They go to the doctor with a frightened friend.

They love unconditionally.

They cry when their children excel and cheer when their friends get awards.

They are happy when they hear about a birth or a wedding.

Their hearts break when a friend dies.

They grieve at the loss of a family member, yet they are strong when they think there is no strength left.

They know that a hug and a kiss can heal a broken heart.

Women come in all shapes, sizes and colors.

They'll drive, fly, walk, run or e-mail you to show how much they care about you.

The heart of a woman is what makes the world keep turning.

They bring joy, hope and love.

They have compassion and ideas.

They give moral support to their family and friends.

Women have vital things to say and everything to give.

HOWEVER, IF THERE IS ONE FLAW IN WOMEN,
IT IS THAT THEY FORGET THEIR WORTH.

Tuesday, July 14, 2009

Hello Mother, Hello Father

Do you remember that song about Camp? I DO! I sang it for a school talent show when I was in 6th grade. LOL 

Camp is a BIG affair that requires a LOT of planning. There are supplies to be bought (travel shampoo with easy-to-open tops for Angela, body soap in a similar container, etc.) new swimming suits to purchase (long story there) and bags to be packed! 

Then you have to get all this stuff together. While Angela was busy helping Dean cook dinner on the grill, I was packing Angela's stuff for camp. I might as well have hung a 'do not disturb' sign on my neck, because really, if I lost concentration there was going to be a problem at camp later! 

I got all the stuff together, and laid it out on her bed. 


I know this doesn't look like a lot, but that's because I have a secret for packing a kid for camp! You see those little zippered bags? I've been collecting them for months! LOL They are the bags that new sheets come in, and boy are these bags handy! In the picture below you can see why. 
Each bag holds an entire day's outfit!!! Now, it's fortunate that camp happens in the summer months, and summer clothes don't take up as much room as winter clothes. LOL But, that big pictured above holds a pair of shorts, tshirt, underwear, socks, and a bra. So, when Angela gets up in the morning, she only needs to open that bag, and put on everything it contains. I packed long clothes too (jeans and sweatshirts and stuff) for the cool evenings, but this time of year you don't need as many of those, so you they can be packed separately. When my boys were younger and went to camp, the LOVED that I packed their daily clothes this way, because they didn't have to THINK when they got up. LOL What you don't see pictured here is the giant bag of meds I had to send along as well!

Angela and I had a long day ahead of us. The drive to camp is 4 hours, but we had a *slight* detour (of about 3 hours) to make first! So I had to wake her up at 4:30 a.m. Poor baby! I was secretly relishing the payback for all the times she's woken me from a sound sleep! I hated to disturb her sound sleep! 

And who doesn't love a mother who snaps a picture when your eyes aren't even open yet?

Ah, daylight! She did really well with all that driving we had to do! 

All the way to camp she kept repeating, "You drop me off right? Just leave, I'll go by myself!" When we got to camp, she was number 63 of 91 campers to be checked in!!! Aaaaahhhhhhhh We arrived when they were on number 32, so we had to wait awhile. She BEGGED me to LEAVE already! "But Angela, I have to meet with the nurse to go over your meds, and we need to unpack your stuff." Oh, she was very frustrated with the fact I was hanging around! And, she did NOT want me taking pictures. Actually, it was pretty clear that I was not to talk to her, or appear at all like I was with her. You know we had that 13th birthday a few weeks ago. LOL

While we were waiting to get checked in, we found out that the camp had closed early during last week's session because of confirmed cases of the swine flu!! Oh man! Have I mentioned Angela has a weakened immune system? The hired an outside company to come in and sanitize the whole place. All the new campers, and the counselors were checked over pretty carefully to make sure there wasn't a repeat this week!

FINALLY it was time for me to go, and FINALLY Angela let me be seen in the same vicinity as here, and to take her picture. Here she is on her camp bed. She sleeps in a hospital bed at home, so she's sleeping in one at camp too! When she went to this camp back in the spring, one of the other young ladies brought a stuffed animal and a blanket. Angela is not attached to any particular items, but she has spent these last 3 months reminding me that she wanted to bring this stuffed turtle. We did not bring a blanket though. 

And that is where I said my goodbye. There were other girls bringing their stuff in, and her counselor was helping them say goodbye to their parents. (they weren't quite so eager for their parents to leave as Angela was! Should I feel good or bad about that?) 

I called yesterday to see how she's doing, and was told by a counselor, "She's doing great!" and that's about it. I'm going to assume no news is good news, and go about my week enjoying doing NOTHING!

Saturday, July 11, 2009

Bathed and ready to go!

I know some of you have been following the story of Holly. Today she had her last bath here, and tomorrow she'll be going with her forever family. Holly is a beautiful dog, both in body and spirit. We're sure going to miss her!



Friday, July 10, 2009

Fun in the sun


Last weekend, Angela's buddy Adam had a little incident with his new bike. Ever since, she's been quite concerned about him! But Adam was thinking ahead too, so he brought home some medical supplies so he and Angela could play hospital. Their favorite game to play together! (And yes, his mom and I stay RIGHT THERE so nobody is getting TOO involved in the game!) 


Then it was time for some swimming! Angela and Adam spent most of their time in the pool practicing hand stands! I love these videos, because I can't help thinking that 2 years ago, neither of these kids could swim, much less put their faces in the water!




A few days ago, I stumbled upon a crime scene in the living room. Someone had snuck into the house, put my kid to sleep, then left!



Today she was also practicing floating. I don't know about you, but this picture gives me the willies!

How smart is YOUR dog?

 Because Dudley and Holly are retrievers, they feel the need to bring me a present whenever I come in the door. They usually bring me shoes, but they will bring whatever they can find in a hurry. "Oh look! Here is mom's bra! Surely she'll want this."  or how about, "Oh! Dad left this beer can here, I'll bring it to him!" Often, when they bring me shoes, Dudley and Holly will bring me a matched pair, each carrying one shoe.

But this day, Dudley decided to beat Holly to it, and brought me the pair himself! Since my shoes are usually scattered all over (because there is a house full of dogs carrying them around!) he had to look to find the pair! What do you think, is it a $10,000 contender? 



And, just for fun, here's the scene in our living room tonight! You're welcome to count them, but DON'T ASK QUESTIONS!!!!!!! LOL

Wednesday, July 08, 2009

Narrowing the choices

Well, the University of Minnesota is out as for as the esophageal manometry goes. Our choices are now Milwaukee, CHOP (children's hospital of Philadelphia) Boston, and Cincinnati. Between our regular pediatrician and the dr. at Mayo they'll be making the decision on which is the best place to send Angela to. According to them, "Angela's case is very unique, not to mention complicated, and she needs to go to the place that not only does the most manometry, but has seen the most unusual cases."

I'm voting for Boston or CHOP, since I know people at those places and can make it a fun time!


Tuesday, July 07, 2009

A new kind of shopping

Today Angela and I went shopping for a couple meals worth of groceries. I talked alot about soft foods, and "hard foods". But I explained that for her "hard foods" are things that are "hard" for her to swallow. I talked to the point that her eyes glassed over and I believe she was rolling them at me. Finally, when she stuck her tongue out at me in frustration I decided to just shut up and shop.

I did spend a fair amount of time on breakfast stuff. This is the most difficult meal to get her to eat, and all of the "soft foods" she can eat are things she doesn't care for. She doesn't like oatmeal, or hot cereal in general, or eggs. I can get her to eat eggs if I call egg salad "yellow salad" instead, but she'll ask me as she takes each bite "No eggs in here, right?" This morning for breakfast I made her malto meal with bananas in it. Yeah, she ate all the bananas out of it and left the rest. Bananas aren't the greatest thing for her though, since she's so easily constipated! UGH, this is going to be a balancing act!

Speaking of constipation, since she can't eat bread, I've been wondering how I get fiber into her? I got the brilliant idea to get some metamucil, only to find that the label has this warning label:


So, no Metamucil for Angela! I got her some Benefiber instead, and it didn't have any of those warnings, so we'll see how it goes!

Angela did ask about pancakes. I'm not sure about those...the way she chews (or a better description would be how she DOESN'T chew) she tends to swallow each bite in a big wad, and I could see that getting stuck.

I'm still on the fence what to do about camp. She's eaten this way for 12 years, so what's another week while she's at camp? If I change her food program for camp, that puts her into a totally different category, and she won't be able to attend this camp, instead needing the respite camp instead. What are your thoughts?

Well, I told Dean an hour and a half ago that I was headed to bed. And, as I type this I realized there is paperwork that is due to the county tomorrow that I haven't even started yet. So, off to get that done.

Oh, Angela started ESY this morning. (It actually started yesterday but we were at Mayo.) She was THRILLED that there are friends there she hasn't seen in a couple of years! She came home SO HAPPY. Not to mention exhausted. She had softball tonight and fell asleep on the way home. When we got in the driveway I couldn't wake her up. Finally after several minutes of poking and prodding, she opened one eye and said, "Mom, I'm so tired. I'm going straight to bed." Which is exactly what she did! Gotta love that!




Monday, July 06, 2009

Still Chugging along

Angela and I are still chugging along with her appointments at Mayo. Today was very long, and very boring! Our morning visits (OT, then video swallow, then OT again) went by quickly, but the second OT visit ended up taking about 5 minutes so we had THREE AND A HALF VERY LONG HOURS to kill before our next appointment with the Ped. GI. UGH!

We killed some time outside at the fountains, and found some awesome live entertainment going on. An a cappella group that was fantastic!

Finally we met with the Ped. GI. That was the visit I'd been waiting for. She's pretty sure that at sometime Angela had a stroke within her brain stem. On the video swallow Angela is able to swallow liquids without any problem, but solids are clearly and issue! She does an amazing job of protecting her airway, but it's tons of work for her, which is why she closes her eyes when she eats! She's concentrating so hard on relaxing so she can swallow!

She needs to have esophageal manometry done, but finding a place that does it on children is difficult. We know that CHOP (Children's Hospital of Philladelphia), Milwaukee and Boston Children's does it, but we still need to find out of the University of MN does or not. We know the Children's Hospitals and Clinics (that's the Minneapolis and St. Paul group) does not. If we can't get it done here, and if I had the choice, I'd go to CHOP because I know people there. LOL

For now there is a major diet change in place for Angela, and I'm still trying to sort out in my head how to explain it to her in a way she will understand. Basically, if it crunches, she can't have it. Anything bulky (hamburgers, chicken nuggets, any type of breads, meat, blah blah blah) are no more. She can have things as thick as mashed potatoes, but that depends upon their consistency. Sticky stuff is no. Hot dogs would be O.K. if chopped up because they're kind of slippery. Canned fruit, particularly peaches, are O.K. provided she chews it well.

Once the manometry is done we'll know what, if anything, we can do next. Those results will tell us if dilating her esophagus, along with botox injections to the area, will be beneficial. If not, she'll have to stay on this diet forever. If it is possible, it should last for a couple of years at a time before having to be redone.

On the 17th we meet with the Neurologist at Mayo who will probably be ordering additional tests.

Tonight she and I will have a talk, and then I need to go grocery shopping for approved foods!

Waiting

Sitting in a huge massive waiting room at Mayo clinic. This morning we met with the OT for awhile, then have a video swallow (To check the mechanics of her chewing and swallowing) then meet with the OT again.

Then we have a break for lunch, and after that we meet with Dr. Freese (GI) to go over what we know so far. Our last appointment is scheduled for 3:30, so we'll be home right around dinner time. It's supposed to be hot so I think an after-dinner romp at the beach will be a good way to end the day!

Sunday, July 05, 2009

4th of July

Angela went to her dad's for the 4th of July weekend, so Dean and I did some playing ourselves. First we went to the Taste of Minnesota. As always, before we go somewhere on the bikes we check the radar, and all was clear. But shortly after arriving at The Taste, a storm blew up. Before we could get to our bikes and get out of dodge, it started P.O.U.R.I.N.G. This is how you get to know your fellow Minnesotans REALLY WELL! You cram a couple hundred of you together under a walkway bridge to get out of the rain! ROFL

This is what a herd of wet Minnesotans look like!


Everyone thought it was pretty funny when I held my camera up in the air and hollered "Smile everybody!" I wonder if they had a clue they'd be plastered on my blog? LOL


Then we took some obligatory pictures just to prove I really do have other kids! Well, at least one on this day. Here's Tyler and Dean. By the way, Tyler is doing SO WELL in treatment! He's gained about 20 much needed pounds, and seems very happy. Now, if only he could find a job. It's certainly not due to lack of trying! There are just no jobs around where he's living, and he can't move. Please pray he can find a job! 


Here's Tyler and me. When did my boy get so tall? I look a lot like a wet rat in this one. LOL Felt like one too!



Self portrait of Dean and I. Don't you love how these make your chins multiply exponentially?



As we were getting ready to ride home (had to get a nap in before fireworks!) Dean snapped a picture of my by the bikes.

Friday, July 03, 2009

Happy Birthday Noah!


22 years ago, at this very hour, on July 3rd, 1987,  I heard the cry of my first born son. Noah Allan Harazin was born at 1:21 a.m, weighing 6 lbs 15 oz, measuring 19 1/2 inches, and with a head full of BLACK hair. 

You were the easiest baby any mother could ever ask for. You never cried, you were just as content as can be. Being my firstborn, you hold a place in my heart that no other person can ever take. When you hold that newborn baby who still smells of the womb, it is so hard to imagine what the future could possibly hold. 

You and I spent that first 4th of July watching the fireworks together from our hospital room. In fact, until you were about 6, you thought the 4th of July fireworks were for you. LOL

Every day I pray for you to find your way in life. Every day I remind myself that God loves you more than I do, and I hope that you can feel his love. Every day, God calls to you, and hopes this will be the day you hear Him. 

Happy birthday Noah! We love you!

 

Wednesday, July 01, 2009

Small Update


Yesterday I got to speak with the GI at Mayo who's following Angela. She said looking at the Upper GI that was done last week, it is NOT classic of Achalasia. It is "insert word here that I forget" Achalasia, which is more indicative of what they see in an older person who's had a stroke within the brain stem. It's possible we could try dilating the narrow area at the top of her esophagus during an endoscopy. If it works, it will probably need to be repeated every few months for the rest of her life.

This makes A LOT of sense given Angela's history. AND...way back to her very first CT scan when she was somewhere around 4 months old. The one that was prompted by our EI PT who came to the house and noticed that Angela was not using one side AT ALL. That landed us in the ER, and the next morning having that first CT scan done, where they saw "a nickel size shadow on her brain stem." To which I said, "She's just 5 pounds, and her brain stem isn't really any bigger than that!"

She did NOT want to change Angela's eating program until we have ALL the tests done, but also said, "It wouldn't hurt to have her on soft foods and liquids only until we have this sorted out."

We really need to have her esophagus looked at to make sure there isn't any erosion happening, but I also don't want to change her diet then wait 2 months to have the scope done and have everything look ok BECAUSE we changed her diet. I'm kind of thinking...you know...she's been eating like this for 12 years, what's another few weeks?

So, here's the schedule so far:

Tomorrow (July 2nd) Meet with Genentics. I do tend to get impatient with genetic counselors, so I could use some prayer for patience with this one! LOL

Monday, July 6th, 9:30: Intake with OT
11:00 Video Swallow with OT/ST
1:00 Meet with OT again
3:30: Meet with Dr. Freese (GI)

July 23rd: Meet with Dr. Patterson, Neurology

Still to be scheduled: Endoscopy w/biopsy
Esophageal Manometry (Mayo won't perform this test on peds, still waiting to find out if Minneapolis does. Most likely they do.)