Mourning, Life Goes On....

Hi Everyone,

On Friday my siblings, Aunt, and Uncle came over to start going through my mom's things, it was a difficult night. The plan was for them to come over on Saturday also, about an hour before Katie's party so we could go through some more, that never happened. We talked a lot which made for a very slow moving process, and just the fact that it was difficult on all of us we decided to do it another time. I told Sherry I just started to go through Peter's clothes, and it's almost been a year, no need to rush things, I'm in no hurry to get my mom's things out of my basement.

Katie's party was very nice, she had a castle for her cake, Catherine did a very nice job. Yes, it was pink, inside and out, and delicious! I think this haircut she got has slightly matured her, there is something different about her that I can't explain. My friend Carmen gave her kid lip gloss and make-up bag for her birthday, she carries it all around the house and is constantly putting some on (she can't wear it outside of the house). She is definitely carrying herself differently these days, I'm so proud of her.

Sunday we went to our Church's festival, the kids had a good time. They raffled off baskets filled with various different things, like one basket was filled with movie theater type candy, another was a pampered chef theme, beanie babies, etc... Well, to make a long story short, we didn't win!!! Catherine, on the other hand, won TWO!!!!! Katie and Grace had their faces painted by Cuddles the Clown, she does one heck of a job, they looked incredible. Sherry and Evan spent the week-end with us, they had a Wisconsin getaway!!! It wasn't planned, it was very spontaneous, all the kids had a nice week-end with our company.

Yesterday Ted, Robbie, Katie, and Grace started Vacation Bible Camp at the Greek Church, they are having a good time. This is the first time Grace has done something like this, it's a good experience for her so when school starts she should have no issues. Helen is still in summer school, I think she has another two weeks left, she is still enjoying it (still getting smiley faces!!). Katie has been talking at camp, that is HUGE!! She refuses to talk at school, the teachers have suggested Select Mutism to me. I discussed this with her doctor, and at this point there is no concern, she feels Katie is just very shy, and I agree. Katie talking at camp is a big step for her, now I will have to see if she participates in the skit they will be putting on at church on Sunday, that will also be HUGE.

Last week the kids and I met my friend Irene at the Greek Monastery. We were blessed with a piece of the actual cross Jesus was crucified on. There has been proof that this piece of wood has healing power. Irene suggested we go for Helen's sake, because of the Celiac, but I have to wonder if it did something to Katie. Hmmmmmm... I'm glad we went, the church is absolutely gorgeous. Peter used to drive by it all the time while it was being built and couldn't wait until it was done so he could see inside. He was gone before it was finished, so I went in to see it for him. Last year at this time he was in the hospital with elevated blood sugar, he was in for a week. I really miss him.

Tonight I had a sales rep from Kirby vacuum come and give me a demonstration, anyone have one? They are very expensive, but according to him, it will be the last vacuum I ever purchase, plus, it shampoos too. I liked the fact that it got up all the dust and "gunk" from the floor, something my cheap vacuum doesn't do. Please give me your comments if you have one, should I go for it and invest? I apologize in advance to the seven people whose phone numbers I gave to the sales rep., I get money off for every person I listed (you will soon know who you are!).

Starting to prepare myself for the next two weeks.
Until next time-
Take Care,
Sue




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Movie Night

I am going to make this short tonight because it is 11:30pm and I still have three kids awake! I know, I can't believe it myself, my kids used to all be in bed and asleep by 8:00pm, 8:30pm at the latest. I took the girls to get their haircut today and I taped it because it was the first time for Katie and Grace. After we watched a movie, Robbie wanted to see the video, so I hooked it up to the TV so we could watch. Once we watched the haircuts they wanted to see the video of them sledding with their dad. I really didn't want to do it because I thought it would be too difficult. I did cry when I first saw him, heard him, and especially when he was interacting with the kids. Life can be so unfair, he was such a wonderful dad to our kids, they are missing out on having that in their lives. Once we kept watching and saw him laughing and just being him, it got easier and now I am glad I made myself watch, in fact, I lost track of time. What memories, and I am so thankful we have it all on tape! My next step will be to go through the pictures and have the funeral home put them to music on a DVD (after all, I have already paid for it!). I also saw my mom on some of the footage, she was holding a crying Noah who was only 13 days old. I couldn't really see her on that one, but I could hear her. I did see her working on the blanket that she made for Noah while at Sherry's house for Easter. It was difficult to see and hear, I think because it is soooo fresh. I dreamt about her last night, she told me not to spend a lot of time being sad, and she knew how much I missed her. I really believe that they come to us in our dreams and both she and Peter knew this. When I would have really bad days, I would always dream of Peter that night. In most of the dreams I got a hug, and was left with a feeling of not being alone. When I would wake up the next morning I would be disappointed yet somehow felt stronger than the day before.

We have been having movie nights lately, popcorn and all!! Saturday night was our first one, and the kids have wanted it every night since. We have been lucky enough to have had some good family movies on TV lately, but no popcorn every single time! I find popcorn all over the living room the next day, and I have gotten a little tired of being the only one to clean it up! I made a deal with the kids about the next time it happens. If they don't help with the clean up, then no more movie nights, I think that's fair! We spread blankets on the floor, everyone grabs their pillow, and we get into our pajamas. Noah even grabs his pillow, in fact, every time I say, "Let's go watch the movie!" he runs into his room, tries to grab his pillow(he is still in a crib), and ends up coming to get me so I can get it!!! It is sooooo cute, he calls it his "plowe".

We have a birthday coming up on Saturday, Katie will be turning five! I will be doing all my cleaning starting tomorrow! Catherine is making the cake for her, Katie requested pink, inside and out!! Good luck to Catherine on that one, I'm guessing maybe Barbie. I have left it up to Catherine as to what kind of cake, she mentioned she may be able to do a castle, that would be cool! Katie is my girly-girl, through and through! All things Barbie and princess, pink and purple, that is all that interests her these days. Nail polish, lip gloss, dresses, fancy shoes,(thanks Sherry!) all things girl, that's Katie!

Helen has been bringing home only smiley faces from school, that's a good thing!!!!

Until next time-
Take Care,
Sue

So much for making it short!!!!!!






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Things That Make You Go BOOM

Our Fourth of July was very relaxing and uneventful, just the way I like it. I just had my siblings, their spouses and kids, and my aunt and uncle(my mom's sister), over for a cook-out. I usually invite a lot more people over when I have parties, I think we needed to be together, just us. I like to invite my kid's Godparents to the parties, it's important to me that my kids know who they are. If you were to ask any of my kids who their Godparents were, they could tell you. They could also tell you all the others too! Sherry and Evan were the only ones to stay for the fireworks. We usually go to North Beach to watch them, this year we found a place much closer to home, and NO SAND (I am usually finding sand for days after we go to the beach!) We took our lawn chairs and a blanket, so everyone could be comfortable, and found a nice spot to sit down. In front of us there were blankets and chairs set up, but no one ever came and sat down so Robbie and Noah made themselves comfortable. During the fireworks Robbie made it a point to come up to me and tell me, "Some of those "BOOMS" aren't fireworks, they're my FARTS!!!" After sharing with me he then went and sat back down, I could not stop laughing, and when I told Sherry she couldn't stop either. For some reason lately, he feels the need to share this information with me whenever the need arises, and that has been quite often!***As I wave my hand in front of my face!***

I have been thinking of my mom a lot lately, I think it's because the flowers have become so beautiful. She is the influence behind all of my flowers around the house, she even sat outside and told me how to plant them. All the years I lived at home I never once helped plant the flowers, and there were many. I didn't want to get my hands dirty, it totally grossed me out. My mom loved it, she loved the feel of the earth in her hands. I grabbed one of my patio chairs and brought it to the front so she could sit down and watch. I must admit, it was a very enjoyable afternoon. After we were done she would sit in the rocking chair by my computer and just look at them. Everyday she would tell me, wait until next week, they are really going to bloom. She never saw how beautiful they are, in fact she was afraid that some of them might not make it. In one of the places I planted there is a lot of sun, she made the comment that it may be too hot for them there. After she passed away, I really wasn't up to taking care of the flowers, it hurt too much. Well, it showed, they started to wilt and not look so good. I thought to myself, she would be so mad right now because I was neglecting beauty. I went outside and pulled all the weeds that had started growing, and I have faithfully watered them everyday since. They are gorgeous!!! I can't help to think my mom has something to do with that, because I am not a flower kind of gal, or should I say, I never used to be a flower kind of gal!!!! One day I mowed the lawn, weed whacked, watered the flowers, and dug up dandelions from the yard. It took me all afternoon, but I must say, it looked very nice!! I went in the house and complained to my mom how long it took me to do everything. She told me she had been watching me and I couldn't fool her anymore, she saw the pride I took in making my yard look nice. It really is a wonderful feeling of accomplishment when I look at my yard and my flowers and they look soooooo awesome!!!

We are fast approaching the time of year that was so terribly difficult a year ago. I am once again having a hard time getting to sleep, and often wake up with the tv still on. I can't relax at night without some noise, so I turn on the tv and start to wind down. I usually turn off the tv when I feel sleepy, not lately. I know this is normal, especially since my mom, and it being this time of year. I was told that what I felt and went through a year ago, I will feel once again. It may also be harder for me the second year, why?, I have no clue. I received a handout in the mail from Rainbow Hospice, the people who cared for Peter at the end, and the only thing it said was, if the death was unexpected I would feel those things. Which, I think it most certainly was! I will be thinking about all that life has given me, and also taken away. I will be strong and not let it get the best of me, but there are days when I just want to say, "What the h***?"

Times are getting tough.
Until next time-
Take Care,
Sue






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Celiac Disease and Down syndrome

In the past 18 months Helen has been diagnosed with two medical conditions: hypothyroidism and Celiac Disease. The detection and treatment of those conditions has greatly improved her quality of life and affected her size and clothing fit. Last week I wrote about hypothyroidism. Today I’ll write about Celiac Disease.

Celiac Disease (CD) is a digestive disorder. People with CD have intolerance to gluten that causes damage to the small intestine and, thereby, decreases the body’s absorption of nutrients. Gluten is a protein found in wheat, barley, rye and, possibly, oats. In people with CD, the small intestine experiences an allergic reaction to gluten. The small intestine becomes inflamed and incapable of absorbing the nutrients in the food consumed. So rather than being absorbed by the body, those nutrients are eliminated from the body in the stool.

The malabsorption caused by Celiac Disease can result in other illnesses and is particularly serious in children in whom malnutrition stunts growth and development. Some patients can experience difficult symptoms that significantly decrease the quality of life; others exhibit no symptoms whatsoever. Because there are no “typical symptoms” and many of the symptoms that do manifest mimic other gastrointestinal disorders, CD is often undiagnosed or misdiagnosed.

According to one study, the incidence of Celiac Disease in children with Down syndrome is 10%. The study further concluded that the prevalence of CD in children with Down syndrome is 25 times that of the general population. The numbers are difficult to assess, however, given the potential for misdiagnosis or lack of diagnosis altogether. The rate of CD in the U.S. has been reported to range from 1:250 to 1:1,500. More recently, the prevalence has been widely published as 1 in 133 people.

No matter what the overall numbers are, the number one – your one child – is the one that matters most. So, is it possible that your child is that one in 10 that has Celiac Disease? While there are no typical set of symptoms, some possible indications of CD include:
- Weight loss
- Diarrhea
- Stomach cramps, gas and bloating
- General weakness
- Foul-smelling or grayish stools that may be fatty or oily
- Stunted growth in children

Diagnosis of Celiac Disease begins with a screening test that requires a blood draw. The blood is evaluated for high levels of specific antibodies that indicate possible CD. If levels are elevated, a small sample of the small intestine is taken endoscopically and then microscopically examined for damage. Small intestine damage, specifically the destruction of villi, confirms CD.

No treatment can cure Celiac Disease. However, the symptoms can be eliminated by removing gluten from the diet – forever. Wheat, rye, and barley all contain gluten. Oats are an unresolved question. It appears that oats themselves may be safe to consume. However, oats can be contaminated with gluten if processed with the same equipment that has processed wheat, rye or barley. Most doctors recommend removal of oats from the diet. Helen's doctor has advised Susie to withhold oats for one year. After that point, she can reintroduce oats into Helen's diet and observe Helen's response. If her old CD symptoms do reappear, she will eliminate oats permanently. If not, oats consumption can continue.

The sensitivity to gluten exposure varies among patients. Some can tolerate occasional gluten exposure. Others have extreme reactions to a mere crumb. So, it’s important to be cognizant of surprising sources of gluten and the possibilities of cross contamination. Gluten is used in most sauces, stabilizers, flavorings, fillers and emulsifiers. And those are commonly used in other prepared foods such as salad dressings, sauces, beverages, seasonings. Helen became sick again once when Susie let her eat sausage. She didn’t realize that sausage has gluten-containing filler. Meatballs once caught her by surprise too: breadcrumbs. She had to explain cross contamination to a fast food employee that thought she could just remove the bun from Helen’s cheeseburger when they hadn’t filled her order correctly. It's an education for many of us.

Helen was diagnosed with CD in November of 2006. Her stomach cramps ended as soon as the gluten-free diet began. Within weeks her stools were back to normal and she’s less irritable. She understands that she can’t eat some of the things that the other kids eat. Susie tells her when something she wants will make her tummy hurt and she usually accepts that. Kids being kids, there’s occasional surreptitious consumption now and then. The change in Helen over the past 18 months, thanks to treatment for hypothyroidism and Celiac Disease, has been remarkable. She seems, to me, to be happier and more energetic and there’s just a lightness about her that’s a joy to behold.


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Hypothyroidism and Down syndrome

Helen, the inspiration for It’ll Fit’ll, has been diagnosed with two medical conditions that have affected her size and clothing fit. Those conditions are hypothyroidism and Celiac disease. She takes medicine daily for the hypothyroidism and gluten (wheat, oats, barley and rye) has been eliminated from her diet to address the Celiac disease. Diagnosis and treatment of those two conditions have had a huge impact on Helen. She no longer has the stomach pain (sometimes it had her doubled over) or loose stools associated with Celiac disease. Further, she is more energetic and less irritable. Lastly, she has lost weight. Both conditions are more prevalent in people with Down syndrome than in the general population. So, on the chance that some of you may not be aware of those issues, while your children may have some of the symptoms, I will write about each of them – in separate posts. Today’s post is about hypothyroidism.

Hypothyroidism is also known as “underactive thyroid.” The body does not produce adequate levels of thyroid hormone. Because the function of the thyroid hormone is to control the body’s metabolism, people with hypothyroidism exhibit symptoms consistent with slow metabolism. Symptoms include:

- Fatigue
- Muscle weakness
- Muscle aches, tenderness and stiffness
- Joint pain, stiffness or swelling
- Weight gain or difficulty losing weight
- Constipation
- Irritability
- Memory loss
- Thin, brittle hair and fingernails
- Uncoordinated movement

Children with hypothyroidism may exhibit additional symptoms such as:

- Poor growth and, therefore, short stature
- Delayed development of permanent teeth
- Poor mental development

Since many of the symptoms of hypothyroidism are coincident with Down syndrome (e.g. short stature, low muscle tone, constipation, weight gain) those signs "can be well hidden in children with Down syndrome" as Dr. Len Leshin puts it. So Dr. Leshin, and other medical experts, stress the necessity to annually test children with Down syndrome for underactive thyroid. This is seems quite sensible in light of the fact that the prevalence of hypothyroidism in people with Down syndrome is greater than in the general population. Review of several research studies indicates the prevalence of hypothyroidism in people with DS is 25% to 30%. The prevalence of hypothyroidism in the general population is about 4.6%. So, people with Down syndrome are about 5-1/2 to 6-1/2 times more likely to have underactive thyroids than are people in the general population. More surprising, though, is the fact that one-quarter to one-third of all people with Down syndrome have hypothyroidism. That's one in every three (or four) people!

Hypothyroidism is diagnosed or confirmed through a blood test which measures the level of thyroid hormones. The treatment is hormone replacement therapy. Usually the patient takes a tablet daily. The injectable form of thyroid hormone is prescribed less often. Two types of replacement hormone medications exist: natural - which are derived from pig, cow or sheep thyroid glands - and synthetic. The synthetic hormones are most commonly prescribed. Determining the proper dose seems to be an iterative process. After treatment begins, blood testing is conducted again to determine whether thyroid hormone levels are at proper levels. Often medication dosage is adjusted until the proper balance is achieved.

Helen has a wonderful pediatrician who routinely tested her for hypothyroidism. In February 2006 the results indicated that Helen had become hypothyroid. She has been on a synthetic hormone medication since then. Her dose was adjusted twice, to achieve the right hormone level. As I mentioned earlier, since treatment began she’s had more energy, been less irritable, and has lost weight. Two years ago, when she was 5 years old, she was wearing size 10 pants. Now she wears size 8. There are many, many comparable stories all of which conclude with the parents’ relief at their child’s diagnosis, treatment, and health improvement. And, the frequency of hypothyroidism increases with age. So even if your child is an adult, hypothyroidism is still a possibility. If the signs and symptoms strike a cord with you but your child's doctor hasn't talked with you about hypothyroidism - maybe you should raise the topic for discussion.







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Tuesday

Hello everyone, hope you are ready for the holiday, happy Fourth of July to all. I am taking a little break from cleaning, my family is coming tomorrow for a cook-out and fireworks. My house and yard are the most kid friendly, so here the party will be. I can't believe how much I don't get done now that the kids are out of school, so that means I have a lot left to do.

Today was my day to myself, Catherine took the kids, and survived once again! I went to the eye doctor, remember I mentioned reading glasses? Well, I do need reading glasses but he suggested I wear them all the time to help with far away also. He said, "Welcome to the forty's!, it is very common for people "your age" to need glasses." I was okay with that, I already knew I would need them, what I wasn't expecting was that he mentioned BIFOCALS!!! Hello, isn't that for people way older than me? What the heck, now that freaked me out!! He explained to me about a lens they have where you can't see the line so no one will ever know. Phew, sigh of relief. On Thursday I will be going to pick out a pair, I'm hoping to find a very hip pair so I can be a hip chick! After I had my appointment, (my pupils are still dilated), I went to a little neighborhood store that Catherine told me had gluten free food. What was I thinking? I couldn't read the labels or the price tag!!! I thought the prices said one thing, when I got home and my eyes were back to normal, they said something completely different! I wasn't paying close attention when I was rung up because I was chit-chatting with the sales clerk about the food. Lesson for the day; don't try running errands with pupils dilated!!

We had a nice time at the Greek Fest, special thanks to my friend Irene for taking care of us. I must say though, the carnival people that ran the rides this year were not very friendly. If you are running a kiddie ride, shouldn't you be very nice so as not to scare the kids? My kids kept going through the fun house, they had the wrist bands, and the lady told them they could go through one more time. There wasn't anybody else going through so it's not like they were denying some other kid their turn. When they went up the stairs she wouldn't even look at them, so they would get right in her face to show her their band, she would point them in the other direction without saying a word to them. They didn't understand that she already knew they could go on, she was very mean, in my opinion. They are just one of those traveling carnivals that have nothing to do with the church, so enough about them. The food was scrumptious, especially the Loukamadas, I highly recommend them. They are deep fried dough balls with honey drizzled over them, YUM!
At one point Helen had to go potty, the closest ones were inside the church, of course there was a line. We were third in line so we were waiting patiently, Helen kept telling me potty, potty, potty. I explained how we had to wait our turn and please hold on we would be soon. The first lady told the next person to go ahead of her, so I'm thinking, alright, this lady will do the right thing and tell us to go, WRONG!! What's the matter with people these days? I know she could see Helen, and I know she could hear her, to top it all off, she took a long time. My father-in-law even commented on how long it was taking this woman, so maybe she had the same issue as Helen, who knows. Thank goodness the woman who let the first lady go, let us go too. Helen just made it to the bathroom, I thanked that woman quite a few times. We are in the bathroom and I notice Helen starting to get comfortable, she is sitting on the potty with her legs Indian style. I told her, "Okay, time to get off, you're done." She tells me, "NO!", and just sits there. Now I know Helen, and when she gets comfortable like that, she's done, so I literally pulled her off the potty so the woman who let two people go ahead of her could finally get into the bathroom.
Helen did have a blast on the rides, in fact, they all did. When we first got there I put everyone on but Noah because I thought he was too little. He tried everything possible to get on the ride, so I thought, why not? I put him on the inside next to Helen, frick and frack! He LOVED it, I couldn't get him off! When Irene brought the arm bands to us, she only had 5, thinking like me, Noah was too little. I then told her the story of the rides and so she went to hunt down another band. When she came back to give it to him, she said, "Noah", he looked at her and put his arm up high right away so she could put it on!! He was ready to go!!
It was hard when we first got there, the Greek dancers were performing, the music was beautiful, it brought back a lot of memories of Peter, he should have been there.

Until next time-
Take Care,
Sue

PS- A shout out to my friends in Rossland!!!! I'm so glad to have met you.








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