2 more weeks to go....

Hello family and friends, I have not had much time to write lately but as I was crossing off the dates on my calendar I realized that exactly two weeks from today Elliah will have her surgery at CHOC hospital. Although the time seems to be taking its time, I am glad that we have been blessed enough to find such a wonderful doctor to guide us on our journey. Yesterday was extremely annoying and I cannot even begin to say how ass backwards our healthcare system is here in the United States.

Daryl had received some paperwork from our insurance company a few weeks ago which stated that basically instead of having the lesion removed from Elliah's neck (which will inhibit her ability to breathe/swallow/eat) that perhaps Cortizone shots to her throat could possibly do the trick instead. Now I am not a rocket scientist but Elliah has seen 5 different doctors who have ALL recommended that she needs to have the cyst removed. I received a phone call from Dr. Ajuja's nurse yesterday and she told me how infuritated he was that our Aetna PPO would even suggest such a thing for a child so small. She then told me that insurance companies will often do whatever they can (especially when it comes to your children's well-being, can) to get as much money from you as possible which I found highly disturbing on several levels.....first of all, by no means are Daryl and I ballin'. As mentioned before we have a PPO for the simple fact that we have children and you never know what could happen, it is expensive and if I were to say outloud how much we have already spent on medical care WITH health insurance I would probably go postal. Don't get me wrong, Elliah is worth every single dollar and cent we have paid but it just makes me realize how crooked our s"hit"stem is.

When we got home today Elliah and I sat outside and all I could think of was what I would give to trade places with her. The thought of her having to undergo surgery breaks my heart and if it were not for the constant love, support, prayers and healing energy we receive on a daily basis I do not know how we could make it through this. All I know is that I was truly blessed with a child who has more charisma and charm than anybody I know. Elliah is truly a blessing and she makes me want to be a better person every single day. From the moment she came into my world, I was instantly better...not for anything that I did...simply because she placed all of her love and faith in me that I was capeable of loving her the way that she deserved to be loved.

God bless you always Bootsy...mommy and daddy are envious of your strength....

It truly is the little things in life that remind you how fortunate you are...

"For me????"

She's so happy!!!!

Over the past few weeks we have received an enormous amount of love, support and encouragement and I am feeling much better than I had been and I must say that it is mostly due to the fact that I am surrounded by such amazing people!!! I could spend hours thanking each and every person individually as if I had won an Oscar and this blog would never end but I have to send a special thank you to our dear friends Eliot and Katie for sending Elliah a beautiful card and two very special gifts.

It is very rare to actually receive mail these days and I cannot tell you how excited Liah was to open her little package which contained an Owl (Elliah's spirit animal) whistle and a beautiful bracelet that was handmade by her dear friend Eliot. It simply melted my heart to see her beam with joy, Liah LOVES jewelry as much as I do and the girl loves to accessorize like nobody's business so this was a perfect addition to her "pretty collection of lovely jewels" (her words).

I was truly inspired by Katie and Eliot's token of love and last night when Elliah and I went on a nightime bikeride I was explaining to her how Mommy use to have pen pals when she was in school and Liah said that she wanted to have a pen pal cousin too. I know that most of us are busy and we are inundated with things to do but if anyone is willing to be Elliah's pen pal let me know, it truly is so fun to receive things in the mail that does not mention the words "Pay to the order of"!!!!!

Much love to each and everyone of you and thank you for following us on our journey of trials, tribulations, triumphs and love.

So What the Heck is a Thyroglossal Duct Cyst Anyways

I can honestly say that before we found out about Elliah's condition, I had NEVER heard of a thyroglossal duct cyst, let alone what the Sistrunk procedure was and I have spent several hours on the internet doing my best to research them both and I have only been able to find one blog entitled, "Mi Familia Linda" where a woman shares her own experiences of having a TGC. I can not say how relieved I was to finally read about others who have gone through this and to know that I wasn't crazy to have as much anxiety as I have been having was truly a blessing.

Although the majority of the people who have posted on that particular blogs were adults, I was able to find a few people who had small children who had had the Sistrunk Procedure done and I have been in contact with them and they have been able to answer a few questions for me. It's amazing how generous complete strangers can be and the amount of comfort they can provide.

So to answer a few questions..

What is a thyroglossal duct cyst?

A thyroglossal duct cyst is a cyst that forms on the base of your child's thyroid gland. Early in fetal life, the thyroid gland moves from the bottom of the tongue to the base of the neck. As the thyroid moves, it drags some of the lining of the pharynx, which can form a cyst. A thyroglossal cyst usually appears between ages 2-10. It is found equally in both boys and girls. The main risk of a thyroglossal duct cyct is infection. Bacteria from the mouth may cause the cyst to become infected. In Elliah's case the cyst (which looks like she swallowed a grape) literally appeared overnight, thanks to my beautiful Mother who notices every single scratch and wound on her grandchildren, we have been able to have Liah seen by some amazing doctors in a very short amount of time. This cyst also explains why Elliah was always getting sick which is a huge relief because I swear we were taking her to the Dr.s every other week for something!!!

What is the Sistrunk procedure?

The operation is called a 'Sistrunk procedure'. The cyst is removed along with the middle of a small bone under the chin called the 'hyoid' bone, and the tube ('throglossal duct') within the tongue muscle is removed as well. This is done under a general anasthetic (asleep) and usually takes anywhere from 45 minutes to an hour and half, depending on where exactly the cyst is attached. There have been cases where the bone does not have to be removed, at this point we are not sure but as soon as we know...so will you.

What kind of recovery will Elliah have?

This will depend on how her surgery goes. We have been informed that they usually keep the children overnight to make sure they do not have any problems with swallowing or a fever. The normal stay is anywhere from 1-3 days, and we are hoping that Liahbug will recover fast and we can bring her home as soon as possible. She will more than likely stay home for a few weeks, just to make sure she doesn't re-open the wound on her neck.

For those of you who know Liah, know that this kid has A LOT of spunk so I think the biggest obstacle Daryl and I will need to overcome is just getting her to slow down!!! She will not be allowed to have anything 'crunchy' for at least a week, and will only be able to have liquids for a while. Although it took a little bit of convincing on my part, Daryl and I have decided that we will have the same exact diet that Elliah does because the last thing we want to do is torture her with foods that she cannot eat. I think it will be a good way to show our solidarity with her and who knows, we may drop a few pounds too!!!

***All of this information was provided by Kidshealth.com and the CHOC hospital homepage***

I am feeling a little bit better now....we still have a ways to go but I do see a beautiful rainbow at the end of the tunnel.

Perspective

"Could be worse. Not sure how, but it could be." Eeyore

Double Boooo!!!

So I have had a few days to digest what is currently happening to my baby girl and I can honestly say that I as much as I wish to God/Allah/Buddha/Jah that I felt better, I don't. This past week I have had several conversations with friends and family who have been beyond supportive that I almost feel like a jerk for even complaining but I am in fact a human being. I have always been a person who has had a strong faith in the powers that be and believe me, now is not the time to question it.....I guess I am just numb to the fact that at this point there is absolutely nothing I can do except wait....

Last night, Daryl, Elliah, Jayden and I set out for a family walk around the neighborhood with our dog Bruce LeRoy and as we left the gate I forgot that I had not checked the mail that day. I received two things...one was a phone bill and the other was a letter that explained Liah's ultrasound (which was a bunch of doctor jargon that I did my best to decipher) and that she was was going to need surgery to remove the cyst that is attached to her thyroid bone. As I was reading the letter I once again felt a pain in my heart that stung so bad that it made me dizzy.

As we continued to walk down the street it felt as if EVERY dog in the neighborhood was going crazy. Here we were trying to take our dog out for a walk on what started out to be a lovely evening but the neighborhood dogs were going beserk, and it was hard to control Bruce so we turned around and went home, perhaps it was the full moon or the alignments of the planets, needless to say, I instantly felt defeated; not just from the walk but from the reality that no matter what I try to do in my life, I can only protect Elliah from so much and the rest is up to the universe. Once we got home, Daryl and I read and re-read the letter several times before we both just looked at one another wishing one of us had answers. I could sense the weight he was carrying and when he said he was tired and ready for bed at 9:00 PM, I did not question him.

Earlier today I was in contact with one of my dear friends and she had mentioned that it was okay to be angry and that people who say things like,"what does not kill us will only make us stronger" or "God doesn't give us what we cannot handle" are not instant remedies to make us feel better, and in fact, those words are infuriating!!!! If I had a bullhorn right now, I would probably run down the street screaming out of anger, why you may ask....just because!!!!!!

Don't get me wrong, I am very thankful for several reasons. #1, the 2nd doctor we saw ruled out the "C" word, thank God almighty for that. #2, Elliah is still so young and unaffected by this, I am continually praying that this will be a very faint memory. Each morning she has woken up and said, "Mommy, my Adam's apple is getting better" which is another painful sting to the heart but I usually just kiss and hug her and reassure that it is. (Which is not true, I just have to continue playing the Mommy game of "everything's gonna be alright") #3, we have wonderful health insurance. Daryl has sacrificed having extra money on his paycheck every month by having PPO insurance simply because of the fact that we have two beautiful children and you never know what curve balls will be thrown at you and literally I feel as if we "have a golden ticket"(Elliah's favorite movie right now is the original Willy Wonka, which we all watch at least 12 times a week). #4, the love and support we have received from our family and friends, without them, I would be a frickin' mess, so I thank all of you for reminding me that I do need to stay focused and positive for Elliah's sake. #5, that Daryl and I have a solid foundation. We have definitely had our struggles over the past 8 years but we know when we need to unify and form Team Voltron when necessary.

As mentioned before, September 9th is the day we are waiting for. Elliah will more than likely have a Sistrunk procedure done which will hopefully remove the cyst and not affect her thyroid glands. I will have to post more on that later...tonight I just needed to vent before I go to bed and dream of butterflies, rainbows, cotton candy, unicorns and waterfalls which is what Liah told me she dreams of every single night. I love you Elliah Aide' and all I dream of is for you to have a life of good health and happiness....

Mommy kisses can't always fix boo-boo's

For those of you who know me know that I internalize most things until I get to a point where I cannot take the pressure and eventually I blow up, which if you ask Daryl, (my trusty sidekick) is not cute. I do my best on most days to show the positive side that lies within me even though it has been a continual struggle to make that solshine come through..the one thing that I cannot fight and feel like Superman against Kryptonite is when the situation involves my baby girl Elliah. As every good parent knows...there in NOTHING in the world that you would do to ensure that you child is healthy and happy, yet unfortunately life LOVES to throw curve balls at you that turn your world upside down and makes you wonder WTF did I do to deserve this!!!!!!

That being said...here goes....Last Saturday night I left Elliah with my mother, Daryl and I had an engagement party to go to so we kindly asked Grandma Aide' if she would watch her favorite 2nd granddaughter, which she obviously obliged to and life went on as normal as usual. The following day when I went to pick her up, my mother(who is notorious for being a hypo-chondriac) said to me, "Have you seen this before?" as she pointed to what appeared to look like an Adam's Apple on Elliah's neck. Doing my best NOT to be alarmed, I told my mother that I had not noticed it previously and did my best to not freak the F*ck out. (Please excuse the curse words in this post...I'm emotional dammit!!) We went about the rest of our Sunday afternoon, yet I could not stop thinking about the lump on Liah's neck. Throughout the day, I kept feeling it, wondering if I had somehow, someway neglected my child and not noticed it before. I started going through photos and recollecting memories of her sleeping and for the life of me, could not remembering seeing it. As mentioned we went about our day, celebrated a birthday with one of our dearest friend's daughter and while I was so grateful to be surrounded by so many wonderful people, my mind would not stop racing about what could possibly be wrong with my most precious treasure.

The following morning I woke up and immediately called her pediatrician and they asked us to come in that same day. I did my best to convince myself that everything was fine and that they would send us home with some antibiotics and tell me that Liah was going to be okay. As her doctor examined the lump, he immediately stopped talking to me and I began to get nervous. I felt my knees buckle underneath me and sat down because while I was doing my best to be strong for Elliah, I knew that the biggest weakness I will ever have in my life is her. Dr. Azhand asked me how long Liah had had the lump and I told him that we had barely noticed it the day before. After what felt like the longest silence I had ever heard, he said that we needed to see and ENT specialist (ear, nose and throat) doctor as soon as possible. He did not want to say much, other than, he was not confident in saying anything about Elliah's lump until we saw a specialist.

I can honestly say that from a mother's perspective, there is nothing worse than having a doctor tell you that he cannot help you, so you need to see another doctor, who will hopefully have some answers. As I drove home, Elliah was in the backseat telling me how happy she was because she received a Mickey Mouse sticker and a lollipop and how much fun she had at the doctors office...me on the other hand cried the entire way home. I immediately felt a guilt that I could never explain, other than "Mother's guilt", was there something that I may have done wrong or overlooked, was I a bad mom???

The hard part was when I got home...I had a full house...Daryl's mother and brother were visiting from Michigan, Daryl's son was home for the summer from England and I had to disguise my emotions. *The reality was when I got home, no one asked how Elliah's doctor appointment was or what the doctor said* I think they were mostly glad that I brought home hamburgers for lunch because no one said sh*t about Elliah. After I put the food down I went into my bedroom and anxiously awaited Daryl to come home from work so I would have someone to talk to and so I could cry and tell someone how scared I was.

Once D arrived home, we had very little time to talk about what would normally be the most important priority in our lives because we had company over and we were on our way to go sightseeing......to be completely honest, I could not wait for a moment of silence so we could focus on our baby girl and what we needed to do to ensure that she would be okay.

**Fast forward**

This past week has consisted of specialists, ultrasounds on the cyst, more doctor visits and now we have to wait until September 9th, for our appointment to see an ENT surgeon to see what we need to do from here. (For any person who is considering a career as a doctor, I would strongly suggest being an ENT, I literally had to cry in order to get an appointment a month from now, otherwise the wait is almost 3 months!!!!)

What we know at this point is that Elliah has a thyroglossal duct cyst that is attached to her thyroid gland which needs to be removed. At this point I am simply praying that the cyst does not have any thyroid tissue inside of it because if it does, they will have to cut out the center of her thyroid bone and she will need to be on medication to regulate her thyroid for the rest of her life....I have spent the entire week researching this disorder and have found that it has a high success rate as long as it is simply a cyst and not tissue, but let me tell you, this does NOT let me sleep any easier at night. I find myself up at all hours, rubbing Elliah's back and legs and telling her that I am sorry for the road that lies ahead of her while she sleeps. I know Daryl must feel an extreme amount of guilt and pain as well...un-like me, he hides his tears much better than I ever could.

As of now, this story is to be continued because we do not know what is going to happen until September 9th. The only thing we do know is that she has the best pediatric surgeon at CHOC hospital and I am eternally grateful that Daryl has an amazing job with health benefits... I am not sure what we would have done without it. I am so thankful to the heavens and the skies to have him by my side to go through this with, Elliah is so blessed to have him as her Daddy!!! Lastly, I am also very grateful for my dearest friends who I have reached out to, initially out of fear but ultimately out of love.....I know that I needed to hear their words of encouragement and support and I know that my friends/family love me, but more importantly they love Elliah a million times more.....and I wouldn't have it any other way.

To be continued.....

Don't Call It A Comeback...

Talk about taking a break....After being inspired by so many of my dear friends I have decided to come back and do my best to take charge of this blog. I have found that in life we get so busy, distracted, tired and pretty much will use any excuse to not stay committed to things so this is my new challenge!!! Each day Elliah does something that reminds me how fast time is flying by and I need to do this to remember the little things in life that make it that much better!!!

Stay tuned.....