Tooth Tales and Edible Extras!

I'm so excited! Today at Occupational Therapy our OT discovered that Lily FINALLY has a tooth coming in! Yep! It's in the back on the right side of her mouth! I ran my finger along the gums in her mouth and I could feel a sharp little point sticking out. So cool! So I am sure very soon that little tooth will poke it's head through. It does seem rather strange that it is a molar instead of one of her front teeth, but we'll take it. I guess there is no rhyme or reason to how Ds kids teeth come in? Correct people if I am wrong. I am just so excited too at the possibilities this will give her for eating. She is doing really well with eating by mouth. She consumes about 1/4 cup to 1/2 cup of Stage 2 baby food and cereal 3 times a day (breakfast, lunch, dinner). She is actually opening her mouth to accept the food more readily now. It is so exciting for me to watch her finally catch on to this. It just took some perseverance and patience on my part and consistency too before she started to show signs of improvement. Well, now we can move on to chunky foods eventually and also the sippy cup! Yeah Lily!

Mic-key Button Mania

So, now that life has gone back to routine I will attempt to be more diligent with posting more frequently. On August 11th Lily got her first mic-key button placed. I was simply ecstatic! No more tube hanging out of her belly! WooHoo! Well, that was just the beginning of the mahem to come. Approximately 2 weeks later she pulled it right out of her belly. Frantic, I called the GI department at the Cleveland Clinic and asked them what I should do. Well, they told me not to go to the nearest ER because they do not know what to do when a child comes in with a mic-key button. GREAT! So what do I do! Long story short, they were able to accommodate us so we took Lily right in the GI department that day. They showed me how to put in a new button and all the other care that goes with it. Piece of cake, right? So I thought. Almost exactly a week to 9 days later we are out to dinner at Bob Evan's with Grandma and Grandpa and Lily is inconsolable! What gives? We are feeding her while all this is going on and playing pass the baby. Well, it wasn't working. Next thing you know Bill is holding the feeding tube, adapter, and mic-key button in this hand. You've got to be kidding me! Nope it had happened again. So we packed everything up and headed home for my first attempt at putting in a replacement. Thank goodness my in-laws brought us our food home later and they kept Gwynny with them which also made things easier. It was a success! I got the button in on the first attempt! Yeah! It doesn't end there. Exactly one week later we are having dinner at my brother's house trying to figure out which flowers and plants we would like to take home from my dad's funeral. While visiting Lily's button came out again. We didn't have a back-up with us and we were about an hour away from home so we had to lube up the bad one put it back in and tape it to her belly so that the opening wouldn't start to close up before we got home. Oh my gosh! What is going on with these buttons? Anyone that has dealt with buttons before probably has been in a similar situation. It is sooooo frustrating! I finally had had enough so this Monday I called both our dietician and I called the manufacturer Kimberly Clark to complain. The dietician was no help and basically told me to call the manufacturer as I had already planned to do so. After giving them my sob story over the phone the woman at Kimberly Clark was very sympathetic. In fact, she told me it wasn't my fault. WOW! Someone is feeling my pain. She told me they would be overnighting me 3 mic-key buttons free of charge. WoooHoooo! There is a happy ending to this story, well yes and no. Yes, because we got the replacements but there is still that chance that the button that is in her now will come out again in a week or less. Who knows? Supposedly each button is supposed to last about 2 to 3 months, not 1 week. It's insane I say. Crazy. Insurance only pays for 4 buttons a year so I am glad I have back-up. Well, cross your fingers and say a prayer that it was just faulty balloons in those buttons because I really do not want to have to keep going through this every week. Gotta run, but I will keep you posted.

"Saying Goodbye to my dad!"

On Friday, September 18, 2009 my dad slipped away into the loving arms of Jesus. It by far was one of the hardest days of my life. My brother and I were there with him when he passed. He had been in and out of the hospital for over 6 weeks and his pneumonia had turned into a fungus. He just wasn't able to fight it anymore. Hospice came in a few days prior and was making him as comfortable as possible. I still think that struggling to breath because your body is filling up with water is not a comfortable thing no matter how many drugs they give you. The last few days of his life it was so difficult watching him prepare for his journey home. At times it was as if he was trying to work out some things in his head and was unable to express those things to us. I know that he is with Jesus. We made sure that he was ready. My uncle prayed the sinner's prayer with him several weeks prior so he would know without a shadow of a doubt that when he died he would be in heaven with Jesus and my Grandma and Grandpa Porter. I'm sure it was a wonderful reunion when he met them at the gates of heaven, those pearl gates that shine and glimmer more radiant than we could ever imagine. No more pain, no more suffering, no more Parkinson's Disease! Thank you Lord! Though he will definitely be missed I know that he is in a much better place. Till we meet again Dad...I love you and I thank you for giving me the life that you did. You were a very special man in so many ways. You're loving, caring ways...always giving and never expecting anything in return. These things will not be forgotten. This is not the end. This is not good-bye. This is only the beginning of a new life together someday. Until then...I LOVE YOU!!! See you up there!

The Beautiful Faces of Children with Down syndrome

http://www.tangle.com/view_video?viewkey=97ded4264584c748d6ab

Follow this link to see an amazing video about how beautiful and special Ds children are. This video was originally sent to me via FB from my cousin. It touched my heart so much that I wanted to share it with everyone. Posting a link was the only way I was able to share it with you. Hope you enjoy it as much as I did, especially the lyrics to the song.

Labor Day Weekend 2009

Well, another Labor Day weekend is quickly coming to a close. I am sitting here relaxing for a few minutes while everyone else in my house is already asleep. I love staying up late now just for some "me" time. We had a very busy fun-filled weekend. We also had some not so good news too.

Friday I drove out to Geneva to see my dad in the hospital. He was taken back there on Monday of last week from the nursing home. He was receiving physical therapy there. It turns out that the pneumonia was back, he also had sepsis, and his kidney's were not functioning right. Things were not looking good at all. The doctor's only gave him a 40% chance of recovering this time. Well, praise the Lord by Thursday he was starting to come back out of it. The doctor's were amazed! They said he was sounding better, his kidneys were working better, and that they were going to move him out of the ICU to a regular room. His mind was still very disoriented and he was very much out of sorts. He kept trying to get out of bed and when I was there he was pulling on the sheets and was just very restless. Well, I stayed for awhile and prayed with him and told him how much I love him. It is just so hard to see my dad this way. I wish he didn't have to suffer. It's hard enough for him having Parkinson's Disease. As a result of the Parkinson's through all of this they had to put a peg tube in for him to eat because his gag reflex is totally gone. It is just too risky to continue to allow him to eat by mouth. He could easily aspirate again. Well, just when we thought things were getting better my brother calls me today and tells me that my dad is doing worse again and that he would have to go back into the ICU. I am floored! Lord, why are you allowing this to happen? This has been a complete roller coaster ride!

Saturday we putzed around the house and then took the kids to the pool for a few hours. This was the last weekend our pool would be open so we wanted to take advantage of it. We really got our monies worth from our passes this year. I won't even hesitate to renew our membership next year. Saturday evening it was off to Grandma and Grandpa's house for a cook-out. We had BBQ chicken, corn-on-the cob and lots of veggies. I love eating over there because my mother-in-law always makes a lot of veggies which is great for the diet.

Sunday we got up early, got ready, picked up Grandma and Grandpa and headed down to Columbus to go to the zoo. It was awesome! They have a fabulous zoo! One of the best in the country I'm told. We arrived around 12:30pm, ate a picnic lunch, and then headed out to see the animals. Very neat stuff! We didn't even have enough hours in the day to see everything. We left around 6pm and made our way over to an Applebee's for dinner! Got the BBQ ribs! Yummy! We also got the spinach and artichoke dip which is so delicious! It was after 8pm before we got in the van to head home. Two exhausted kidlings fell asleep in the back. One watching "Sleeping Beauty" and one snuggled up with her Lovey in her car seat. We got home late about 10:30pm or so but we had a great time. I would definitely love to go back there again.

Labor Day started out slow and laid-back. We decided to go to the pool one last time because today was the last day. It was a bit chilly because it was overcast outside. The lack of sun also made the water much colder as well. I opted not to put Lily in today because she wasn't feeling well this past week and was sneezing with a runny nose in the morning. Gwynny had a blast as usual. She even convinced Daddy to play with her Bath Beauties dolls in the pool! LOL! We headed home and prepared for a cookout here at our house with our good friends the Courtney's. It's always good times when we get together! We had some burgers, corn-on-the-cob, and some of my special potatoes on the grill. The kids played and I gave their two boys haircuts. Yes, I used to be a hair stylist back in the day so I somewhat know what I am doing. After having homemade ice cream and some coffee we called it a night and now I am exhausted. Well I posted pictures of the zoo. Other than getting the bad news about my dad it was a wonderful weekend! I'm so thankful for my husband, and my two beautiful daughters. I love spending time with them and making memories that will last a lifetime.

Wordless Wednesday: Gwynny's First Day at Preschool

First Day of Preschool

Yesterday was Gwynny's first day of preschool and she had so much fun! She didn't want to leave. What touched my heart the most was the little baggie with Hershey's hugs and kisses along with a poem that she brought home. Her teacher said it was for Bill and I. Gwynny of course really didn't want us to have them to ourselves so she played the "you need to share Mommy" card to justify getting a taste. Here is a picture of the poem. It reads,

When I am at school, or when we are far apart, you may get a little sad, but you are always in my heart. So here are some hugs and kisses, for when I am away, to remember that I love you each and every day!

Made my day!