A better day

Well after my pity party yesterday and into the night when my brain finally decided to just go to sleep....I woke up feeling much better. Still nervous as to what is to come with Cody. After doing some research and talking with others a lot of what Cody does is making light bulbs go off. I think the hardest part is I am in limbo until Tuesday when I can talk with our pediatrician and that is the hardest part for me. So while I can still say "why us, why Cody" I know that we will get through this too. The best part is I know I have lots of friends and family that will be there to cheer us on! And to them (they know who they are) a big ole thank you!!!!! HUGS....

I am so glad it's Friday. I'll get to see my husband tomorrow. :) He's only got one game tomorrow so what do we plan to do tomorrow evening you ask.....why go to another football game! But at least he doesn't have to ref it and we can all watch together. The boys are anxious and it's homecoming with two big rival schools playing so it should be some good high school football. Tomorrow afternoon is the parade and because we are experiencing an Indian Summer right now - I get to get back out my flip flops and the boys will be on a sugar high from all the candy that will get thrown.

Still waiting for my brother to call us and say "it's time". Kristie will be 39 weeks on Tuesday and we are all patiently awaiting the arrival of Jack. Patiently is the key word - is there such a thing when you are anxious for a baby to arrive!?? I text them today and said I was "up for a drive" but........we must wait.

Oh yah....one thing that helped today - Retail Therapy! I got a new purse for winter and I love it! :)

Emotional Day

Today has been an emotionally draining day. It started out early. Got to work and had the pit in my stomach that I had to call the pediatrician today to find out the results of Cody's blood work. So I called and waited for them to fax me a copy. I was on the phone with my sister when our receptionist came in and handed me the paper - my words were "wholy shit". In front of me was clear evidence that Cody has a thyroid problem. His levels are severely elevated, TSH coming in at a 9.06 (normal range is .4 - 4.0) . In June this same level was 9.10.......so we are back to where we started. There is something about talking to family on the phone that can make me cry. So yes, I threw myself a pity party today. My good friend Jeff went and got me a Dew to help. It did! I had a feeling this is what the blood test would find but I really was hoping I was wrong. Just once I want my mommy gut to be wrong! So.....I called our ped back to let them know I got the fax. First thing she said to me was "his levels are pretty high" and that was coming from the girl that answers the phone. Our doctor is on vacation till Tuesday so I have to wait to talk with him. I told her our history and asked for the pediatric endocrinologist number and I called their office. Apparently you have to have a referral from the treating doctor - not because of insurance but because I guess they don't want every crazy mother bringing their kids in based on a mommy gut feeling. I can understand. So I called our ped. back and she said they would make the call. I verified that this afternoon and the doctor has to sign something and fax over to them on Tuesday. Hopefully our first visit will be within the next couple of weeks. I want to get Cody seen and started on a treatment course ASAP. For his sake! He is so not himself and I have to remind myself to give him a little more patience as he can't help it.

While I was in the mood today, I also called and got our appointment with Dr. Tatum moved up to November. We have to discuss the adenoid issue and what our course of treatment will be. That will be 11/20.

I've done lots of crying today. Thankfully my mom and sister were down tonight and I could talk it over with them. I really want to yell "why us, why Cody" as I did the first few weeks of his life. Isn't having a cleft enough. I don't really know what our future holds and that is probably the worst of it. I am guessing medication but not sure. That tends to be the standard. I have a lot more questions as the thyroid controls the pituitary gland and that is a midline organ - same as a cleft. Midline defect. Along with this comes more doctors visits, more co pays, more money to come up with for medication, more who knows.......The other side of me is saying "bring it on", I can do this, I don't really have a choice as I didn't have a choice with the cleft and what that has to offer us. We will get through this just might shed a few more tears along the way.

So tonight as I held Cody a minute putting him to sleep I am trying to figure out how to "explain" this to him. Unlike his lip that he can see, he can't see this. I have to search within me to find the right words for a 4 year old. And then I read this poem and realized yet again I am in Holland! http://www.luckysmiles.org/inspiration.htm

Things I realized

There are a few things I realized today. I realized that I am so very proud of Cody. Ok, this isn't the first time I have figured this out but he was such a trooper getting his blood taken. Brett and he arrived at the hospital and he came walking down the hall carrying his backpack. I was curious.....he felt the need to bring his turtle, turtwig, dolphin, juice cup, baggie full of gold fish and donuts - all for a few minute trip to get blood taken! How cute is that! They drew the one vial and the guy put a bugs bunny band aid on him. The guy made the comment "he probably doesn't know who that is"....you are so right. Thankfully, they did have Spongebob stickers and he got 6 of them. He was so happy as he didn't have to ask for some for his brothers.

That vial of blood is going to determine our next step. If his TSH level comes back elevated again, I will contact the pediatric endo and set up an initial visit. If the level comes back normal then I will contact Dr. Tatum and see what he suggest our next step is in following through on the adenoids.

Yesterday I realized something else. My little boys aren't so little anymore. We have moved onto different toys. I actually had to go on line last night to look up Dylan's new favorite - Tech Deck. They have a website for this and an online community. Really! In case you have wondered what you do with these little skate boards that are way to small for anybody to stand on - well......your fingers become the "person" and you can do tricks on them with your fingers! So of course I need to figure this out! This is gonna be good. Then I went onto the Bakugan website - I swear they have a website for everything. I finally figured these things out too. The little ball has a magnet in them. In order to "battle" you need to place the magnetized card on the floor and roll your ball to battle. These come with accessories too - a battle ground, shooter and carrying case. Santa, Santa, Santa.......read up!

My last realization came last night. I realized that you can get a head in this world if you know somebody. Last night I read the online newspaper from my hometown area. I came upon a story with the word "smile" in it. I was intrigued so I clicked on it. It was about a little boy that has a cleft lip and palate and how he got his surgery done through Operation Smile. What I know about this organization is that they don't offer "free" surgeries to anybody in the US. They do all of there surgeries for other countries. While I won't say anything bad about that as they do offer great work - I know to many families living and struggling with this diagnosis right here in the US. So I choose to stay home on this issue. The family got to this organization because the mom's father works for a company and the owner of that company knows the CEO/Founder of Operation Smile. That is neither here nor there. Very happy the family/little boy is getting good care and it's not costing them a penny. However, at the end of the article they give Operation Smiles website and fundraising plea. What I know is that it is so misleading. If the family - two towns over read the story - and then a week later had a baby with a cleft and they lived in the US - Operation Smile is not going to offer them free services. I once contacted them about an Amish family and I got the "thank you for thinking of us, we can't help you, maybe these people could" response back. So......I know I am getting off on a tangent here BUT I guess this article just shows you can't believe everything you read. This family got free surgeries and travel cost because somebody knew somebody. NOT because this organization does this for families in the US.

I did however, contact the editor of the paper and ask to be put in touch with the writer with hopes of coming into contact with the family. I would like them to join Lucky Smiles and become a part of our NY family. Regardless of where/how they receive care, they are walking the same road as I am and so many other families and we are here to support them.

Sunday Best

Why is it that kids have no sense of time on the weekend. Our morning started out early - Cody rose at 7. I manged to keep him quite till 8ish and then I turned on the TV and that got me another hour. It felt so good. Then it was up and at em! The Sunday typical....breakfast, laundry, dishes, pick up toys, get another snack, another load of laundry....phone rings. It's my friend from MA who was in Corning all weekend for a fundraiser and she was going to stop by. Yeah! So I convinced my children to help pick up and I hit the shower. Got to visit with Karin and Andrew for just short of an hour as they had a long drive today. It was sooo nice to see her again. We've become friends through cleftAdvocate, usually have only see each other at the conference in Vegas. So it was so nice to see them. Then we had a christening to go to today. We didn't do the church service as I am NOT that brave with 3 boys. Just went to the house for a nice lunch and the boys got to play. Then it was onto Walmart for grocery shopping. I promised the boys a little "something" for being so good today. So we hit the toy isle. The Xmas list is growing for sure. Tyler found a matchbox yellow firetruck. Firetrucks are his new favorite. Dylan has had his eye on these skateboards. I am unsure as to what you actually do with them. They come with an extra set of wheels and a screwdriver and you can change them. He LOVES it. Cody has his eye on bakugan. I don't understand this just as I don't understand Pokemon. So we get down that isle and there is a section that is wiped clean. Yep, the bakugan section. Apparently this is popular. As we were standing there as Cody was making his decision of only getting "1"....a mother and boy come walking down the isle. Walking down the isle in that we know what we are looking for walk. They slow as they reach us so I figured they were looking for Bakugan. Yep....little boy was so disappointed. The mother told me she had just left Target and they had none. The boy had a Bakugan ball in his hand - just like Cody has and wanted another. Guess the stores sell out of these fast and when shipments come in on Tuesday you need to get to the store. That went into the memory bank for Xmas shopping. So Cody settled on a pokemon stuffed animal. Brett missed out on all of our fun as he had 2 games this AM and then work tonight.

Pumpkin Farm

Today we took the kids to the pumpkin farm. We had talked about it during the week but wasn't sure as we had some rain early this week and we weren't sure what the weather was going to be like. Today turned out to be a great fall day. A little cool but the sun was out and it was dry. You have to take advantage of these days. So Tanya called this afternoon and we said "let's go". We have a couple pumpkin patches close by but went to the "little" one and the kids had fun.
It's great when they cooperate for just a couple of seconds so we can get a picture!

As we all searched for the "BIG" pumpkin the boys found what they were looking for. I think they got some good carving ones.

Then it was onto the fun stuff. The bounce houses, playground and food. They wanted to do a tractor ride but I had to draw the line someplace. These fun days can turn out to be a $50 trip. So instead after we were done, we went back up to Tanya's and Uncle Shaun took them on a "hayride" of his own. I think they enjoyed it just as much.

Today was also Grandma Marilyn's birthday. The boys have been playing "let's go to grandma's house". They miss them and since we haven't seen them since August I guess playing this is rightfully so. Maybe Grandma will have to do a trip out soon. They called tonight to wish her a happy birthday.

Yesterday I got a much need haircut. I think Tanya was 2 cuts up on me. Just haven't worked it into my schedule. So I went and instead of cutting it, we decided it's time for a change. (Maybe a little inspiration from Tash too getting hers, thanks!). I have a lot of short pieces as I once spiked it, but it will grow and I plan to grow the layers out. I've gotten a lot of compliments so far, today was the first I did it and I think it looked ok. So......this will be a work in progress over the next several months. We'll see. The last drastic style change came when I found out I was pregnant for twins. Over 5 years ago. So time for a change.

Ortho Visit #2

We met Dr. Scott today. 2 words - LOVE HIM! Now onto the details.......

As we were waiting in the lobby, Cody played in the real boat that's in the office. Once inside the doors we were given a great tour of the entire place. The inside of this office looks like the inside of a ship. Awesome. Dr. Scott came right in and one of his first words to Cody was "I can't wait to be your friend". After some looking, poking, prodding, talking, questions, you name it - this is what we got.

On the questionnaire was a question on thyroid. I marked it as "testing" so we first talked about that. What were the signs - Cody always being tired - so then he looked at his profile xray and said "those adenoids are huge". (Not the first time we have heard that). He asked if Cody was a mouth breather - "yes". Basically being a mouth breather, you don't release the carbon monoxide out of your lungs. So your heart has to work harder to pump blood to your body. Hence could be why Cody is so tired. He said though to continue testing the thyroid because of his TSH level being high like it was. So we really don't have an answer about that. He also said that being a mouth breather - your tongue sits behind the bottom teeth. When you breath out of your nose - your tongue rest behind the upper teeth and snug up against the palate. In children and during their development, their tongue can help guide their upper jaw forward as they grow. But if you can't breath out of your nose then that won't work. Well because of Cody having his palate repaired and any scar tends to tighten up - that scar brought his palate in. So the thought is - we should look to clear his airway and get him breathing out of his nose and then with the help of an appliance and Cody's tongue and growth his palate will move out to make a better U shaped arch and his tongue will help guide his jaw forward. Hopefully preventing a jaw distraction later.

What does this mean.....well not a 100% sure yet. Dr. Scott will discuss with Dr. Tatum. Dr. Scott would like the adenoids to come out. I am hesitant to remove them completely as that tissue helps Cody's soft palate close off therefore when Cody talks he does not sound hypernasal. Back 2 years ago when Cody had his tonsils removed, Dr. Tatum said the adenoids were large but instead we tried to shrink them with nasal spray. We saw the xrays today and could see Cody's airway. It's not completely closed off but it's not as open as at the other end. (picture a garden hose) I will follow up next week with Dr. Tatum and see about a consult with him. We would normally see him in Dec. anyway. My heart is telling me surgery down the road. Dr. Scott would like to start the expander in the spring. He would do it sooner but because of the drive and our lovely northern winters - we are waiting till spring. It should be a 6 month treatment (hopefully) and it would be out before he started Kindergarten.

Things we have to do.......Dr. Scott gave us tongue depressors and would like us to place them behind Cody's upper teeth and have him bite down and try to move those front teeth forward. Right now they are at an angle. Keep brushing!!!! Talk with Insurance and see who is going to pay for what and how much out of pocket we need to come up with. Today was a shocker of $93. Hopefully insurance pays some of that back. Treatment plan is $850. Let the insurance battle begin.

Dr. Scott handed out many compliments. He asked me at one point if I was a nurse. No, but I sure do feel that way most days. I just choose to be a very involved parent. He said Cody's dental hygiene is awesome. He couldn't get over Cody's repair. He said it is fantastic and the lines are so symmetrical.

Other teeth things - Cody's palate tooth is a "hybrid". Meaning 90% baby tooth, 10% adult. He said if it falls out there doesn't appear to have an adult tooth behind it. If it stays, then we can pull it into place and reshape it and whala - a tooth! He also commented on the amount of bone in his gum. He really feels that if we can get the palate widened out - that growth will help to push that gum line together even more and maybe bone will grow on it's own. Otherwise, a very little bone graft. (which Dr. tatum has told us before).

That's for staying with me........What we decided so far. While we loved Dr. Mark, we believe the place for us is with Dr. Scott. The two teams really do do things differently and Dr. Scott is very in tune with what Dr. Tatum wants. Brett and I both left feeling extremely happy and it was Brett that made the comment first that that was "home".

After all of this - Cody being a huge trooper the entire day. Really charming the entire staff. We headed to the hospital for our photo shoot. Can I just say he has "Flower" in him and was very photogenic. They got several shots and I really hope what they were looking for.

Any questions - fire away!!!!

A Cute Picture and Cute Singing

Just a cute photo. They decided to get out their hats and Dylan thought they should be worn sideways. The "Hey Dude" t-shirt was an added bonus. I love my boys, they each make me smile and laugh in a different way! They may be rough and tumble but they certainly do love their momma!

I promised video of the kids singing "Happy Birthday" to Brett. They just get confused as to what to call him when Karly is around. To Karly he is Uncle Brett. So the boys call him that too! Cute! I have to say - they sing so much better than we do!