Sunday, November 30, 2008

Not me! Monday




It's time again for Not Me! Monday. I love this little blog fun started at http://www.mycharmingkids.net/. Check it out and join in the fun. Have fun finding out how "perfect" we really are.



I did not eat four different Thanksgiving Meals this week. No, not me!




I did not stick my finger inside Evan's diaper yesterday to see if he had pooped because that would really be gross. I did not, in turn, pull out my finger with poop on it. That would be extra gross! Nope, not me!




My dryer did not BLOW up completely last night. It did not happen 25 days before Christmas b/c that would be wonderful timing!



I do not have about 10 loads of laundry to do. Nope, not me!



I am not stressing about not having a dryer for a few days. Nope, not me!



My little Evan is NOT crawling now ever so slightly. That would mean he is growing up and he is most certainly not doing that too fast.






Saturday, November 29, 2008

Oh so Thankful!



Well my two guys made it back last night about 10:00pm. Ty was wound tighter than a four day clock, as Andy would say. Andy said that Ty "daddyed" him to death on the plane. This is how he gets after anesthesia and when he is tired. He likes to talk 90 miles an hour. He also doesn't like to quit talking. The treatment went well. Dr. G, Ty's laser doctor, confirmed my suspicions that Ty's lips are growing. This can happen with vascular birthmarks. The blood flow to the area can cause tissue overgrowth. Laser treatments are a huge success in preventing this if started early. I can only venture to imagine what Ty's lips would look like had he not been getting laser treatments. Dr. G had told us early on that he thought Ty would most likely need a lip debulking surgery in the future. I have been concerned lately b/c the laser treatments have done so amazingly well on his face that it seems as though I have noticed his lip size more. His PWS is also on his gums, and Ty has lost his two bottom teeth. The top three teeth are not real. It is a partial due to knocking them out when he was three years old- NOT TY, NEVER! The dentist said that about 6 months after he lost his bottom teeth that he would take the partial out. As I was inspecting his mouth, I noticed the PWS on his gums is looking more red. It was just a concern that I had. So I had Andy bring it up to Dr. G. We really do not know what we are facing with his PWS until his permanent teeth come in. It is another unknown in the journey. Dr. G did however, refer us to a plastic surgeon in NYC who is also a dentist. We will soon make a consultation with him. He will be able to tell us more info about when Ty will need lip debulking surgery, what the PWS is doing in his mouth, etc. All and all it was a great trip. Dr. G said that it just makes his job more fulfilling every time he sees Ty because of the amount of clearing that he has had. It is truly amazing, I agree! Andy said Ty just walked into the surgery room, hopped up on the table and said, "Give it to me!" He is unreal. He did get the chocolate scented anesthesia mask this time. He is his mother's child for sure. I am just so thankful for many things as I reflect tonight. For the Lord blessing me with a wonderful husband who would miss Thanksgiving with his family in order to take his child to the doctor in NYC. Also for a wonderful child who does what needs to be done medically and never once complains about it. For the Lord bringing Andy and Ty home safely. For all of my friends and family. It has been a wonderful Thanksgiving.
On a funny note, I can't believe my Andy went to Macy's on Black Friday. I was impressed. Tracy G.- maybe you should take Andy shopping with you instead of me. He is obviously da' man! He tried to act like he walked right in and then right back out and that he didn't enjoy it. I am thinking a little different though. I noticed that he had a new shirt on and so I asked about it. He then said that he did in fact get it at Macy's. Then, hold your breath, he said that he wished he had more time b/c Macy's had Polo for 40% off. I couldn't believe what I was hearing. How impressive Andy! Ty, however, says, "It was packed mom!" I don't even know if I would do Macy's on Black Friday in NYC.
I am posting some pics of Ty after treatment, and of the Kermit the Frog balloon from the parade. Thank you so much for praying for our family and until next time....

Thursday, November 27, 2008

New York Trip

Okay I am kind of sad. My baby and my hubby had to eat their Thanksgiving meal at Planet Hollywood. That makes me sad. Andy and Ty were able to check out part of the Macy's Day Parade though. They had walked around four blocks to get there and it was barricaded. So Andy asked Ty if he just wanted to go back to the room. Evidently a police officer was listening to the conversation and he told Andy that they could come on through. How awesome is that? They said it was really neat. Ty got to see the Buzz Lightyear balloon. I was hoping that he would. Buzz is one of his favorites. They have to be at the hospital bright and early in the morning at 6:00am. Ty is the first surgery at 7:00am. Pray for everything to go well. I miss my boys!!
Until next time...

Wednesday, November 26, 2008

Fantasy of Trees

We headed out today for our annual visit to the Fantasy of Trees. This is our third year to go, and I just absolutely love it. The kids have a blast, and all of the money spent goes to an awesome cause- East Tennessee Children's Hospital. So if you live in this area and have never been then I must recommend that you check it out. You will not be sorry.

I had a rough morning getting there. When I got downtown to the Convention Center the Holiday Inn Parking garage was full. I have never been when this garage is full, so I just wasn't sure where to park. It has been many years since I have been on campus driving around. (almost 10 to be exact). I was a little nervous, but eventually I found an obscure lot down behind the Foundry. I didn't have to pay, but that kind of made me nervous. I had visions of coming back to a towed car! I guess the catch was you had to walk 14 hundred miles to get to the Fantasy of Trees so who cares if you park there. The kids did great. Even Ty with his healing leg. It is pretty much back to normal now, and he only has an ever so slight limp. We just walked kind of slow for him. We made it finally. Then when we got in the door, I realized that my camera battery was almost dead. All my scrapbooking friend can relate. I thought I would die. I mean we had the matching outfits on. No camera- AHHHH! I did manage to salvage it for a few great pictures though. After these couple of mishaps the day turned out perfect.
This year my niece, Rachael, was singing. So we watched her junior praise team sing a few songs, which were so good, and then headed off to the booths. My sister-in-law, Susan and her mom Betty, along with Rachael walked around with us. My mom and my Gran E also met us there. I was grateful for the extra hands for sure since this was Evan's first year at the Fantasy of Trees. He did great as usual. Man, I had forgotten what it was like to have that darn stroller again. It is good for carrying things though.

So we hit some of our favorite booths. The cookie making booth, the nail painting booth, the mini tree booth, the craft bag booth. We also rode the carousel and the little tea cup things.
I know what you are thinking and yes, Ty does get his nails painted. He loves to do whatever Tristan and Rachael do. I just let him do it. I figure it will only last a while, and the year that he decides he doesn't want to do it anymore I will be sad. That means he will be growing up. So until then I will cherish these memories- Gold fingernails and all!
The carousel was fun this year. Mom rode with me and the kiddos. Evan had his first ride. He enjoyed it for sure. Tristan was so excited to ride on the horse sponsored by Dr. Abby and Dr. Greg. She raced to it and about took everyone out trying to get on "Dr. Abby's horse".
So after a quick look around at the trees, and I do mean quick, we headed home. The trees are beautiful, and I would so love to have an adult day sometime at the Fantasy. It would be great to look at them. With my kiddos it just doesn't happen. I don't really mind though because one day I will be able to look at those trees, and the cookie making, nail painting and tree decorating will be of the past. That will make me sad for sure. They grow so fast. I hope you enjoy our slide show of pictures.

On another note, please pray for Ty and Andy. They will fly out to NYC tomorrow morning at 5:45am for Ty's 16th laser treatment the Friday after Thanksgiving. I am sad as this will be our first year of not being together as a family on Thanksgiving. Andy and I know though that this is one laser treatment closer to maintenance. We are hoping for only two more until we reach maintenance- per Dr. G. I will keep you posted on his progress. Until next time.... Have a wonderful Thanksgiving. God is so good and He bestows many blessings upon us. We have so much to praise Him for.

Monday, November 24, 2008

Not me Monday



Welcome to Not Me! Monday. This is one of my favorite things to read about on MckMamas blog http://www.mycharmingkids.net/ Check it out and have fun reading about how "perfect" we really are.




I have not relented into letting my husband pick up the Santa Clause piloting the Pirate Ship to put in our front yard all in the spirit of Christmas for the kids of course. No, not me!



All three of my kiddos are not sick today and we are not all going to the doctor this afternoon.



I am not in the process of having Marathon Thanksgiving week. Last night, Thursday, Friday, and Saturday. That would be a little too much Turkey so No, not me!



And last but not least, My husband is really NOT Clark W. Griswold (wink wink)





















Sunday, November 23, 2008

DOES HE EVER STOP??



Okay, so now we have a light up Santa Clause Mailbox. Ya just gotta see this. I am officially revoking Clark's Visa Check Card. He is out of control!












Oh, and here is the much anticipated Manger Scene

Thursday, November 20, 2008

Merry Christmas, Clark!

Yes, I am the official owner of a classy, inflatable, manger scene in my front flower bed. Lessons on this. #1. Never let your husband go to Lowe's by himself with your 6 year old daughter
#2. Never talk around your husband about how you really don't like inflatable
Christmas decorations.
#3. Learn to let it go that your house now resembles Clark W. Griswald's house.

Just call Andy- Clark. I have been renaming him all week. So after I have given Andy heck about this inflatable Manger scene, Tristan put it all in prospective for me.

Andy : "Tristan, do you like this inflatable manger scene?"
Tristan: "Yes I do daddy"
Andy: "Why?"
Tristan: "Because it has Baby Jesus in it, and He is the most important thing about Christmas
anyway"
Andy: gives his wife "the look"

So I will once again listen to the heart of my children and keep my Clark W. Griswald manger scene. After all, the Lord's birthday is the most important part of Christmas.

I will however, draw the line at the Santa Clause piloting the pirate ship that is supposed to be here this week. I will make Andy, er Clark, walk the plank on that one.
Until next time....

Thursday, November 13, 2008

Clean Slate

Ty went to the ortho doc this morning, but not before we had breakfast at Cracker Barrell where he polished off cheese eggs, sausage, biscuits and gravy, and apples. Yep, his appetite is coming back. So the doc declared a pretty clean slate for Ty. He is not restricted to any activities, but we are not to push him too hard. He says he feel that he will continue to have his limp for around two months. Each day should get better as his leg becomes stronger. He will need to come back on Dec. 11 and have an x-ray to make sure there is no bone damage. He doesn't feel that Ty has any though. He is cleared to go back to school on Monday- YAY!(for him and me) Home health will come tomorrow and pull the PICC line out. I think Andy and I may be more excited about the PICC coming out. That means we can sleep a full night. W e have had to do Ty's medicine every six hours, and then it takes one hour to go into the PICC. We have to remove it after this hour. We have been running on around 5 hours sleep a night. For me that is not much. If there is one thing I crave, it is sleep. I need at least 8 hours or I am not a pleasant person. I think Ty will just be glad to have a nice hot fun-filled bath. He has only been able to stand up in the bath while we sponge bathe him. It is cold, and I am sure not too fun. I am so glad that Ty is feeling better, and pretty much back to normal. Thanks to everyone for your prayers, thoughts, gifts, cards, etc. We love you all. Until next time....

Saturday, November 8, 2008

Not Me! Monday

Welcome to Not Me! Monday. This is one of my favorite things to read about on MckMamas blog http://www.mycharmingkids.net/ Check it out and have fun reading about how "perfect" we really are.

I did not eat a piece or two, or three of Halloween candy from my kid's stash every single day this past week. Nope, Not me!

I did not take Tris and her friend to see High School Musical 3 this weekend and love every minute of it. Nope, Not me!

I did not eat a bowl of cereal for lunch every day this week b/c I was too lazy to go to the store with two kiddos in tow. Nope, Not me!

I did not buy the new Casting Crowns Christmas CD because my friend Megan said it was great. (It is by the way) Tristan and I did not jam out to Away in a Manger before Thanksgiving because that would be way too early for Christmas music. Nope, Not Me!

I did not also buy Faith Hill's new Christmas CD and listen to it too. Nope Not Me!

Hope you enjoy reading about the things that I so did NOT do this week. Until next time...



















A Friend Loves at All Times.....


"A friend loves at all times, and a brother is born for adversity" Proverbs 17:17



This verse sums up the day. I took Ty to have lunch with his friends at school yesterday. As you can see, they are missing him pretty bad. The feeling is definitely mutual. I am moved beyond belief at how concerned they are about him. They hugged, patted, and loved on him when we walked in and when we left. I only regret to say that I probably caused Mrs. Stephanie's Friday afternoon to be quite a long one. We had them pretty stirred up when we left. To see the smile on Ty's face was just priceless. He loves his buddies. When I see this picture I think about the prayers that I prayed before our decision to start Ty at Grace's Pre-K program. One of my concerns was would the kids accept him? I know it sounds a little vain, but never the less, I had it. You see he had been in Parent's Day Out at our church since he was 15 months old. This was his church, his sunday school friends, his territory. At our church he feels safe. Everyone knows he has a special birthmark and eye. Here he is just Ty. Would it be the same if we moved? What would the kids say about his eye, his birthmark? Oh no, here I have to explain it all over again. Then I realized that I can't control these things no more than I can control how tall Ty will be. I had to let go and let GOD! So with faith and trust, I did just that. I have continued to be blessed by the kids loving Ty. It is refreshing to see how little children just willingly except. No questions asked. I won't lie, I still wish I didn't have to witness him being made fun of, or stared at in his future encounters. It is hard, but I know that God will be there for him. He will never leave or forsake him. That is a comforting promise that I can release Ty into! Until next time....

Thursday, November 6, 2008

Tagged



So my blogging friend Jenny tagged me for a little fun. I am to do these requests




1. Pick the 4th picture folder on my computer


2. Pick the 4th picture inside the folder


3. Explain the picture


4. Tag 4 other friends.


Here is my sweet Ty-Ty trying on his new "vampire teeth". We had a blast trying them on. Even mommy joined in on the fun. He continues to improve each day. He has lost about 5 pounds so I am just trying to get him to eat, eat, eat. He didn't have 5lbs to lose. He is still using the walker, but he has been crawling up the stairs, and sliding back down on his bottom. Each day that leg gets a little stronger. Apparently, I am not the best homeschooler. As he was doing his work yesterday, he told me he really, really couldn't wait to go back to school and see Mrs. Stephanie and the friends. (that is what they call each other in class- "the friends") He is bored here with mommy and Evan. So today we went to visit the kids. They all were so sweet and concerned about him. They truly miss him. We are going tomorrow to eat lunch with his friends. I will take my camera for some photo ops.

I had fun with this tagging game, and now I choose to tag my only two blogging friends left since Jenny is out. I choose Amy C. and Megan. I have to recruit more bloggers. It is so much fun. It is just like journaling and scrapbooking on the computer. Until next time...

Wednesday, November 5, 2008

Evan is 8 months



Little Evan is 8 months old today. I can't believe how fast time is going. He is such a sweetie. The most laid back baby out of the three of my kiddos. His newest thing is to sit in his Jumperoo and when we tell him to jumpy-jump, he just goes to town. I swear I think he is going to hop right on out of it. Of course, he just cracks up. He thinks it is so much fun. He has gotten his two bottom teeth in and looks so cute. He is also starting to babble a bit with ga ga ga ga ga. He loves to say this over and over. He is trying to crawl, but hasn't mastered it yet. Getting up on all fours and rocking is about as far as it goes. I am not ready for crawling just yet. He is not growing up too fast, I won't let him. Really though, I would like to slow it down. He is killing me on the clothing issue. He is wearing 12-18 months clothing and is a whopping 24lbs. How could you not kiss that little face? Check out the carrot nose from eating all of his orange veggies. Tristan had the same thing at this age. Until next time...

Tuesday, November 4, 2008

Out of the mouths of babes

Those of you that know me can verify that I am by no means a pack rat. I hate clutter, especially paper clutter. It makes me feel unorganized and messy. So does this mean that I don't keep all of my children's school work?- You got it! Even though Andy tries to make me feel guilty about throwing it away, I know that I can not possibly keep it all. I would be swimming in papers. I do however, keep the special things. Every once in a while a paper will come home that makes me smile. Tristan had one today that put a huge grin on my face, and I wanted to share it. It was written last Friday on Halloween and this is how it goes,

"To nigh I get to dress up like loosee I hope I get lots of candy. I really want imims!"

So to fill in some of the blanks for you all, Tristan was Lucy from the movie Narnia, and she really likes M & M's. I love the way kids just write words the way they sound. I mean who would not spell M & M's like imims? Needless to say, I will be keeping this paper. It will not be hiding at the bottom of my trashcan. Yes, this is where I put a lot of their old papers so that they can't see them in the trash can. Hey, I can at least be sympathetic when I part with the paperwork. Until next time...

Monday, November 3, 2008

Getting Back to Normal

Things are on their way back to normal around here. Ty continues to improve. He is able to put a little weight and walk on his right leg now. We still are carrying him up and down the stairs, but he is improving daily. He has not had any pain medicine at all today! This is great. It still hurts, but I think it is nothing that Motrin won't take care of. Andy and I are getting pretty proficient with the PICC. It is kind of scary though what parents are allowed to do concerning this PICC line. I keep telling Andy over and over it is a good thing that we are not squeamish about needles and also that Ty is a good patient. His spirit is definitely back to his old self. We even worked on some school work today. Here is a picture of him with his "loot" basket from his classmates from school. He was so proud. I am looking forward to getting back to my routine. I have been off of my healthy eating/exercise plan for about a week and a half now. I can really tell too. This Halloween candy is getting ready to meet Mr. Trashcan!! This is why I don't buy it. I have no will power when it comes to chocolate. Until next time....

Saturday, November 1, 2008

Reflecting

Last night went well. We all slept really good in our own beds. Andy and I had to wake at 4:00am to give Ty his meds. It went over well, and we went right back to sleep. Even little Evan was exhausted. He slept until 8:00am, which is usually unheard of. Most of the time he is bright eyed and bushy tailed at 6:00am. When Ty woke up this morning he was pretty stiff. We helped him out of bed and downstairs to the couch. He then had a bath, and I think that got the ball rolling. After his bath he started walking a bit with his walker. He was able to walk quite a bit today. I pray that he hasn't overdone it though. As far as his spirit goes, we have our Ty Ty back! He is playing, happy, and seemingly back to his old self. The leg is still painful, but we are working on that. Andy and I are giving Ty his antibiotic through his PICC line every 6 hours. There is a special process of cleaning, flushing the line, and administering the meds that we follow. It isn't too bad, and we will be pros before long I am afraid. Ty will need this medicine for two to three weeks. I still haven't told him about being out of school. I will do that tomorrow most likely. It is really so good to be home and reflect on our past week.
It is truly amazing how much our son is loved and prayed for. Not just by us, but by so many other people. We sat in the living room this evening just looking around. It looks like Christmas has arrived. Ty has so many gifts of well wishes. His teacher, Mrs. Stephanie brought over a big basket of toys, gifts, cards, and candy from the kids in his class. To say he was excited was an understatement. The cards, the food, the offers for babysitting. It all means more to us than you can imagine. Most importantly the fact that people have prayed for him diligently touches me so much. I am so humbled and amazed. I praise the Lord that He healed Ty. I know that your prayers obviously worked. I guess we just really want to say thanks for loving our little guy, and to God be the glory for his recovery. Until next time...

Ty's birthmark

Ty's birthmark
Ty before laser treatments

Tyler's Birthmark

A port wine stain (PWS) is a congenital birthmark that affects approximately 3 out of every 1,000 people. They are most commonly found on the face and neck, but they can be found elsewhere. The underlying dilated blood vessels cause the red/pink color of the PWS. When Ty gets upset or hot the blood flow to his face increases causing the birthmark to appear redder. When Ty is colder and the blood flows away from his face the PWS can appear invisible. If left untreated, the vessels may become enlarged and elevate the skin causing the surface to take on a cobble appearance. Sometimes the PWS can also develop into a deep purple color. Occassionally, the vessels can create overgrowth causing the area where the PWS is to become larger than normal.
PWS are present at birth and usually clearly visible. PWS grow with the person and never regress.
The problems of PWS can now be treated by laser.
With different wavelengths a laser beam can be made to react upon materials of only certain colors and densities. The laser is tuned to only affect the darker more dense blood vessels deep in the skin that cause the birthmark, leaving the lighter less dense outer skin with minimal damage.Unfortunately, at this time, most people do not see complete removal of their birthmark by laser treatments. 10%-15% of those treated see 75%-100% fading, 70%-80% see 25%-75% fading, and 10%-15% see 0%-25% fading.
Treatments have a better chance of being effective when a person is still young. The skin is thinner and the mark is smaller. The skin has also not been exposed to the sun as much on a young infant or child. The sun thickens the skin and makes it darker, which in turn keeps the laser from penetrating the skin and hitting the vessels. Ty has had 15 treatments so far, beginning when he was 2 ½ months old. He will be 5 years old in Sept. 2008. He has had 80%-90% lightening in most areas, and almost complete clearing of the pws on his neck. The hardest areas to treat are the mask area around the eyes, and his lip area. Ty’s laser doctor is Dr. Roy Geronemus. He is the director of the Laser and Skin Surgery Center in New York, Ny. Ty goes to New York’s Eye and Ear Infirmiry for his laser treatments and eye surgeries/appointments for treatment under anesthesia. The healing time varies for Ty’s laser treatments. It is usually between 10-15 days, but we may see fading for up to a few months. There's no definitive number of treatments that Ty will need. So far we have always seen some improvement so we continue to get them. He will always need to maintain treatment in order to keep the PWS from getting darker again.

A PWS may also be a marker for associated syndromes such as Sturge Weber. Sturge-Weber Syndrome (encephelotrigeminal angiomatosis) is a congenital, non-familial disorder of unknown incidence and cause. It is characterized by a congenital facial birthmark and neurological abnormalities. Other symptoms associated with Sturge-Weber can include eye and internal organ irregularities. Each case of Sturge-Weber Syndrome is unique and exhibits the characterizing findings to varying degrees.
Ty has had three MRIs to check if the vessels were involved in his brain. Brain involvement is one of the symptoms of SWS, and it can cause seizures. All MRIs were clean for vessels in the brain. Ty does have a malformation behind his eye in the area called the chrodial area, which is another marker for SWS. Since his birthmark covers his eyes, the blood vessels are causing the intraocular pressure in his eyes to elevate. Therefore, he has been diagnosed with glaucoma in both eyes. This malformation, along with his glaucoma, attribute to Ty’s diagnosis of SWS. One reason why his eyes stay so squinty and red all of the time is due to his glaucoma. Glaucoma can cause light sensitivity and watering of the eyes. It can also cause loss of vision and enlarged corneas. Ty has had 9 surgeries to control his glaucoma. Unfortunately, it can not be cured only controlled. He takes three different types of drops two times every day. He will most likely have frequent surgeries on his eyes for the rest of his life, or until a cure for glaucoma is found. In May of 2007, Ty developed a severe bacterial infection in his left eye. He was in the hospital for a week getting his eye injected with antibiotics. The result of this infection coupled with his severe glaucoma has left him blind in his left eye. This is also the reason for the droopiness and the physical appearance of his eye. He has since been able to see an ocularist. She formed a new partial prosthetic eye for him. You can not even tell that it isn't real. It is so cool. We are still learning day by day about PWS/SWS/Glaucoma. The hardest part about Ty's condition is not knowing what the future holds for him. We just take it day by day and rely on our faith in the Lord Jesus Christ to help us through.

Thank you for taking the time to learn a little about Ty and his condition. For more information, please visit the sources of the above information at http://www.sturge-weber.com/, http://www.birthmarks.com/, and http://www.laserskinsurgery.com/

What Ty's skin looks like after having a laser treatment

Tyler after 15 laser treatments

Sturge-Weber Syndrome Awareness