Updates

I have so many pictures to add! I need to upload them to the computer... which may be sometime during the next year or two. We've celebrated Aubreys birthday, and we've had hospital visits, we have bathroom pics, we have rash pics, we have bump on the head pics. Since I've waited so long to put them on the computer, it's going to take even longer to organize them.

Aubreys party was great. She had friends from school join us, and we celebrated with noise makers, silly string, bubbles, leis, and lots of other messy things. It was great! It's so hard to believe she's 4 already! She was so amazing today. Very helpful. We cleaned house ALL day! So we rewarded her with a trip to Baskin Robbins. She loved it!

The hospital visits, rash pics, and bump on the head pics all come from Bailey. Our most recent hospital visit was last week when her temp reached 105.1. I've NEVER seen our thermometer get that high. We were able to get her temp under control and we were sent home. We're doing breathing treatments and giving her meds to hopefully get this gunk cleared up. She's been sick since the first week in May! The rash pics are from today, that's a new symptom she decided to add recently. And the bump on the head is from our Down syndrome picnic. I was sitting in front of her on the picnic table and she decided to lean to the side and fall off onto the concrete floor beneath us. Thankfully, I reacted quickly and caught her before she made hard impact. So, the result was a bruised and scratched head.

Like Bailey, I have been sick for a few months. I have an appointment next week with ENT, and hopefully we can come up with a treatment plan and get this bug out of our house. We'll also continue to work with Bailey's doctor to see if we can relieve some of her symptoms and determine a cause.

Tricia

I Want to Have Down Syndrome

Aubrey asks each day what we have planned for the next day. So, this morning she asked what we have planned for tomorrow. I told her we have our Down syndrome picnic tomorrow. Then she asked if she has Down syndrome, and I explained to her that she doesn't have Down syndrome, but her sister Bailey does have Down syndrome.

Then she asked if Bailey's friends have Down syndrome, so I named all of Bailey's friends who have Down syndrome. Then she asked if the people on TV have Down syndrome, so I explained about the little girls and boys we see on the Baby Signing Times DVD who have Down syndrome. Then she asked if she has friends who have Down syndrome, and that's where I made a mistake. I said "yes, Taylor has Down syndrome". Then Aubrey started crying, and saying she wants to have Down syndrome.

I tried to explain to her that it's something you're born with, and that those who are born with Down syndrome need people like her to help them advocate for their needs. Then I had to explain what advocate means, and finally it was time for her to go to daycare! Whew!

I want her to understand what Down syndrome is, and I also want her to feel free to ask questions. But, I'm not sure how to handle it. I've wondered for the past two years what these conversations would be like. Now that I've had one, I wonder what future conversations will be like, and how to handle them.

Tricia

My Nails Have Been Painted for 2 Years

So, my grandmother ended up in the hospital over the weekend. She, too, has Alzheimer's or some other form of dementia. This is the first time I've seen her this confused. First, my dad commented about how nice her nails look, and she said "well Ronnie, they've been like this for the past 2 years". Then she asked me if I still live on Airport Thruway, and that road is in a different state and is also where my sister lives, not me. It's interesting to see these changes. She has moments where she's completely okay, then she has moments like those I just discussed. I'll continue to be thankful for the moments we have, but she changes each and every time I see her. It's becoming more and more difficult for her to walk. Which is something I've read numerous times about Alzheimer's. She is also easily irritated, and is often confrontational. This is such a sad sad disease.

Tricia

Alzheimer's Poem

Dear Dad

byJulie Western-Zuge

Dear Dad...
How can I tell you now,

Just how much you've always meant,

Just how proud I've always been

How can I tell you now,

That you have always been my hero,

Everything I want to be

Here you are, this shell of the father I once knew,

Whose face is more dear to me each passing day

Even in your pain making me proud, still

Your sense of humor endears you to all around;

I see the women who can now barely function,

The smiles that light their faces when you stop to kid with them.

What a man you are,

Still the greatest man I've ever known,

Still my biggest hero

Here you are, a victim of life's most hideous disease,

Yet you go on making others feel special,

Making a difference in so many lives

Dear Dad, can I ever be so great as you?

Can I ever let you know how much you mean?

You are one of God's most precious angels

And I thank Him for each day

He allows us to go on having time together,

As this cruel disease slowly steals you from me.

If you'd like to join us for the Memory Walk, or if you'd like to donate please click on the Memory Walk button on the side bar.

These past few years have been very difficult for everyone involved, especially for my dad. Nobody deserves this, especially someone who hasn't even reached the age of 60. I know as each day passes he will continue to face challenges brought before him. He will continue to be the great man he has always been. I can only hope he realizes just how much he is loved and needed.

Tricia

Labs and X-Rays

Yesterday we had Bailey's yearly labs and x-rays done. I thought I would arrive early and finish early so Bailey could be at school when it starts... 9am. So we arrived at Watson Clinic for her x-rays and we were finished within a 5 minutes. Great! However, I did question them about the x-rays because last time I remember they had to lay her on the table to do additional x-rays, but the tech said we were finished. So, off to the lab we go. We arrive at the lab and they try to convince the supervisor to allow them to do a finger stick. The supervisor tells them that Dr. W always wants his labs done in the arm. Well, they get the first vial from the arm, and then the flow of blood stops. So, they become successful in convincing their supervisor to allow a finger stick for the remaining vials. Bailey is just wonderful. Very few tears, and she even smiles as we sit for 30 minutes hearing all the stereotypes of children with Down syndrome and their moms. Finally, we're finished.

Then, we head to Dr. W's office for a weight check. As we're walking to the scales Dr. W sees us and say, "glad you're here. We need to do more x-rays of Bailey's neck". Apparently something didn't look quite right, and had they done the additional x-rays I questioned them about (which were also ordered), Dr. W would have been able to determine if there really was a problem. So, we finish doing the weight check, and she still isn't gaining weight. She's lost 1.5 pounds in 3 months. They're going to recheck her Monday morning.

So, we head back over to the clinic, finish the x-rays, and Bailey arrives at school 2 hours late! I go to my doc appointment, get diagnosed with bronchitis (so happy I went so I can start meds and get rid of this cough). I actually feel great, I just sound like crap! Then, I go to work and continue to worry about Bailey's x-rays. Sometimes I wish doctors wouldn't tell you there could be a problem. Just wait until there's a problem to tell me.

Finally, around 3pm I get a call from Dr. W's nurse. The x-rays look good! Whew! However, there are some issues with her white blood count and they are going to do a repeat CBC in a month. So now, we hang out and wait again. She has been sick a lot lately, so hopefully we just need to keep her healthy so those counts return to normal. We constantly have infections (staph, mrsa, bronchitis, weird fevers). So, we'll see what happens next month.

Well, I'm going to enjoy the rest of my quiet time. Keith is at the movies, and Aubrey and Bailey are both sleeping.

Tricia

Appointment Update

Well, I guess it's my fault for being an "I need answers" kind of person. I always think there should be an answer and cause for everything, but now I wonder if I should just accept that some things are a mystery. I hate not getting answers.

We went to Dr. K today and I gave him the entire history of the past few weeks. He seemed concerned that today she had only had one wet diaper, but he had no explanation. He seemed concerned that she would only drink chocolate milk from a bottle for babies 0-3 months, but he said her throat is still irritated and that could be the cause, but why can she eat toast which is rough around the edges if her throat is hurting so badly. He's concerned that she rarely has a bowel movement, but he told us to give her an enema and MOM.

So our instructions are to get IV fluids if she goes 8 hours without a wet diaper... well that will happen daily, unless she drinks enough chocolate milk. Give her an enema tonight and tomorrow morning, start giving reflux meds again, and if she has to get IV fluids to get them to give her Prevacid in the IV. I questioned him about her possibly aspirating, but he really didn't comment on that. I explained the coughing and watery eyes, but he didn't seem concerned.

We can't keep taking her to the ER or admitting her for fluids. We can't keep giving her chocolate milk through a bottle. There has to be some reason for this, and there also has to be an end in sight. I can't get anyone to tell me when we'll start worrying about this. Should we continue with chocolate milk for a few days, weeks, months... how long?

This isn't normal for her. She eats and drinks anything! She's also lost 1.5 pounds since our last appointment 2-3 months ago. He said it may be due to being in the hospital, but she weighs the same she did when we were admitted.

Tricia

We Have an Appointment With GI

We will be seeing GI on Tuesday, and I will request another swallow study. She has had several in her life because of aspiration, but the last showed clear. Since we had the cold/bronchitis issue maybe that caused some other problems! Thank you all for that advice! We suggested at the hospital that we thicken her liquids, but that idea was dismissed by the staff there. But she is, like Leah said, getting watery eyes and spitting it back out with force. I really could have used an umbrella these past few days! She even refused fruit and applesauce. Well, we'll see what they decide on Tuesday. She'll also be returning to preschool on Monday and I'll get with the speech therapist there and see if she can start working on these current issues.

Yes Em, Dianne called yesterday morning to give me the good news. I'm so happy for her, and thankful that you were able to go up there. Dianne said she was a bit upset that she didn't have family around. So, thank you! I can't believe she was in labor that long... I'm so thankful for cesareans!

Trish