Yearly Cardiac Echo and Eye Update

It's been nice not having much to put on here. Sadly, it was a short lived respite.  Last Friday, May 31st, Kate had another eye appointment at Shiley Eye Center. Everything looks good, but....don't you hate that word, there is a suture in her left eye that needs to be removed because it is loose and could cause an infection. Apparently it's not crucial in keeping her lens in place so the Dr would like to remove it along with the corresponding suture in the right eye. I can see the suture when I put drops in her eyes, kind of interesting and a little freaky.

She is currently scheduled to have the sutures removed on June 19th. It's a 30 second procedure, but given her age and possible squirmy body, they think it's a good idea to lightly sedate her. This brings in the issue of her heart condition. It might have to be done at Rady Children's Hospital which turns the 30 second procedure into a half day ordeal. We are waiting to hear from Shiley on this. In the meantime, she is still getting eye drops for inflammation and now antibiotics in the left eye just to be safe.

Kate and Noah both had a cardiac echo yesterday, Monday, at Children's hospital. Kate also had an EKG and a chest x-ray. They were checking Noah to see if his pulmonary artery still looked slightly enlarged. It's still enlarged, status quo. The Dr isn't worried about it, but Noah has to be seen every three years.

Kate has an enlarged aorta. It has increased in size a bit, but her body has also grown so it's still within a safe range. Her daily medication to keep her blood pressure low was increased slightly due to her growth. She will go back in a year.

She did have to have her blood drawn, and I am not kidding when I say I had to physically restrain her to get it done. She made the slightest face when the needle first went in, but then looked at me like she knew she was making a big deal out of nothing.

She is seeing two more eye doctors in the next few weeks. One is tomorrow and he will be checking the general health of her eyes. The next one will be checking her to see what her new prescription is or if she needs to have one at all.

Kate has an appointment later this month to recheck her back and hips. This makes me tired to even think about. Fun for us.

Follow Up, Finally

Things have gotten a bit crazy. The download on Kate is that her eye surgery took TWICE as long as it should have, but it turned out wonderfully.  She can see so much better, she really only needs glasses for reading now. The idea is that she will grow and her eyes will grow and when she is about 19 or 20 years old she won't need glasses at all, or very little. She currently has a pair from Rite Aid until her eyes are fully recovered and then she gets a prescription. Hopefully that happens this Friday at her appointment. She is still on prednisone drops three times a day to bring the swelling down.

I moved. I bought a house, it's lovely. It's on an acre with big trees and a stream! I hear frogs every night and have seen an egret in my back yard, probably eating my lizards. So many of them.

Ethan also bought a home and it has a pool so the kids are very excited. Huck is excited to have a huge yard to run around in.

I will update again after Friday.  It also happens to be the Jog-a-thon at Kate's school, so it's a good day to miss since she has become an official card marker since she can't run like that.

Kate went to Indian Princess camp with Ethan this weekend and apparently has quite the aim. She did exceedingly well at shooting a BB gun at a target and using the bow and arrow. Now she wants horse riding lessons. Ugh, I can wrap her in bubble wrap for that, right?  

Good News

The good news is Kate did very well in her surgery. It lasted a lot longer than anticipated which had me worried, but her vision is almost perfect. She wears glasses to read, but can totally see without them. Such a blessing. The only thing missing is sleep. The night before surgery I couldn't sleep, worried about surgery. Then last night Kate couldn't sleep. She has to wear shields over her eyes and it freaked her out all night. So tonight is the night. Sleep. I hope. I will do a real post tomorrow, or soon at any rate. Everything is good. Thank you for your love and prayers.

Surgeries and Test Results

We had Kate's pre-op on Thursday the 7th. Went through all the same paperwork we went through 6 months ago and got all new prescriptions for eye drops she needs to have both before and after the surgery.


Much to Kate's disappointment, they had to do an EKG. She is holding some of the sticky pads in this picture. She HATES having them taken off. They hurt.

This is Kate using an alcohol pad to take them off herself. She is such a brave little kid.

I am so dumb. I have been wanting this surgery for months. Won't it be great when Kate has her surgery. She'll finally be able to see better. blah, blah, blah. I hadn't realized how long it had been since we have dealt with the inside of hospitals and clinics. The first while they are kind of scary, then they feel like your second home. I'm back to kind of scary. I know this is a good thing to happen, but I just hate sending her in to surgery and waiting. I had just forgotten how much.

We will know the final time for surgery tomorrow, but it's looking like 7:30 in the morning. Back to Rady Children's we go.

I took Kate to see her hip doctor, Dr. Wenger, at Rady's yesterday. They did x-rays and bent everything this way and that. Here's the deal with that. She needs to have her hardware taken out of her legs. It can be this summer or next summer, there's no benefit either way. The surgery will be a one night stay over in the hospital and will not require a cast. Yay!!!  She will be on crutches for a week and then light activity, no sports or anything, for 6 weeks. 10 days after surgery she can swim. That is key for summer surgery. Right now we are kinda leaning next summer. Eye surgery is enough for this year I think.

This week has been a little rough for me. I ended up in urgent care last Friday night, nothing to do with headaches or brain tumors either.  I know guys read this so I'm disclosing that it was a girl issue and you can stop reading now if you are the squimish type.  My uterus had decided that the best course of action was the kill me slowly by bleeding me to death.  I had to go and get some meds to stop it before I needed a transfusion, crazy right?  So, turns out I had to have an ultrasound.

Tuesday morning I saw my OB. He said I had something going on in the left side, but was likely nothing. At 2:30 I had my ultrasound. Not pleasant, but there you go. At 7 pm I had my MRI to check for that lovely brain tumor. Busy day, and not in a fun way.

I got a call from my OB literally as I walked in the doors to Rady's with Kate on Wednesday and he tells me that there was indeed something going on inside the 'ol uterus and it needs to be taken out. So I am getting the details of the surgery, general anesthesia, same day surgery, etc. as I am walking up and trying to check Kate in. Good times.  He also said he would like to do an ablation at the same time. That will basically destroy all or most of my endometrium and I could never have another period or they would just be really light. He said I will have some fairly painful cramps for 6-8 hours afterwards. fun.

On the bright side, I just got a call from MRI folks and I DON'T have a brain tumor!!  But....there is always a but with my body. I have some issues with my sinuses on the left side and symptoms consistent with TMJ and I need to see an ENT.  That's next Friday.

Early this afternoon I received a call from OB surgery scheduler. I am having that procedure done on April 10th. Life is a non-stop party :)

Hmmm.....

Hmmmm...how to start this update. Let's start with Kate. She is gearing up for eye surgery on March 18th. She has a pre-op visit on March 7th. She has to do a round or two of antibiotic eye drops before actual surgery so we will get those and get the details on when to show up at Rady Children's on the 18th. I will be glad when it's over. I'm tired. She has a heart check in May and we will be taking out her hardware in her legs early summer hopefully so she can still have a fun summer. Depends on recovery time, etc.  We will find that out in March as well I believe. This picture was today after school. Nice little flower in the front yard.

Alright. Now me. So I have tried a few medications for migraines over the past few years. I found one that worked getting rid of a migraine after about an hour of pain. Well, I ran out of them a month or so ago. About two weeks ago I had a week that was full of really fun migraines. I spend the better part of 20 minutes on the floor of my closet because it just hurt too bad to move. People say that something hurt so bad they thought they were going to die. I never think that. I get to the point when I start thinking I hurt so bad I wish I would die. That's when I go to my back up supply of Vicodin. I know. It is a last resort and frankly, when I am in that much pain, I don't care. At all. I can take Vicodin like Tylenol. It gets rid of the pain, but I don't feel any of the euphoric feelings other people describe. I don't get sleepy, nothing. It's just like Tylenol only it actually works. That being said, Vicodin is an addictive substance so I don't want to take it on a regular basis. I probably take it 3-4 times a year, not too bad, but not great either. If I can catch it early enough, a couple Excedrin and a heating pad on my neck can get me to a comfortable place. After my bad week of headaches I made an appointment with my Neurologist to get more medicine.

Today was my appointment. I told her about seeing Dr. Harris at UCSD and how he said I have Meniere's Disease and I'm losing hearing in my hearing ear and will likely go deaf. She asked me about the dizziness and the headaches and all of those things. She then had me do some touch your nose and walk down the hall with one foot right in front of the other, haha I'm a little wobbly on that one. She then checked for symmetry with my facial muscles and asked when the last time I had an MRI. I had one in 2009, but not since. She said she can see that my left side of my face, the hearing side, is not symmetrical with the right. That the left side of my face is slightly drooping. Nice, right. Believe me when I say it is barely noticeable. I have smiled in the mirror more times this afternoon than could ever be normal. I see it, but it's not big. On top of that, I really got screwed in the pretty smile area. Hahaha.  Serious though, you should see the rest of my family. I totally got the short stick there. But I digress. 

So your hearing nerve is cranial nerve number 8, and your facial nerve is number 7. They are very close to one another. Given the hearing loss in my "good" ear and now this "facial drooping" she has ordered an MRI to check for "something" that might be pushing on both of those nerves. Guess what that "something" might be?  

Let's set that aside for a minute. Since I have tried several different types of medications for migraines and nothing works, I now qualify for a different type of treatment. Botox! Sadly it won't be injected anywhere that will make me look like a plastic doll, but a lovely 30 shots all over my head every three months is supposed to help with migraines. I told my mom I was actually kind of excited about that, she said sure you are. Sadly, I actually am. I'm tired. Pain takes energy and I need my energy elsewhere. Abby, Noah, and Kate need a real mother. Not this pile of pain on the closet floor. You know my kids are amazing. When I have a headache, they rub my back, give me hugs, tell me they love me, and pretty much do any chore I can spew out without too much pain. 

Waiting for insurance to approve the MRI and the Botox treatments. I should hear back in about a week. This has not been a good day. I have had tons of practice hearing bad news at a doctors visit. I have my moment of shock, I feel sad, then I get mad, then I have a level of acceptance, my quasi zen isn't life great in spite of all this place. Usually that all happens in about an hour.  I have improved the grieving process, it's all the practice. :)  But today has been different. I have genuinely been stuck at shocked and sad. What gives? I am blaming it on being up late last night doing homework. Tomorrow I'll wake up and be able to joke around about my life, right?  I mostly think that there will be nothing on the MRI and the Botox will be my miracle drug, at least that is what I have been repeating in my head all day.

I totally use this blog as my therapy. I hope anyone who reads this will understand and forgive my weak moments. The moments I throw out a serious complain, because this is it. I will pull it together, just forgive me if I'm not particularly chipper until I do. 

 I have had the strangest craving for blueberry pancakes all day. Isn't that funny? My life could theoretically be falling apart and all I want to do is grab the kids and run to IHOP and smother some pancakes in so much syrup it makes me feel ill. And an ice cream cone. That's a legit dinner menu, right?

 Here is my info on Botox. Check out all the places to get poked! And non of them in a place I particularly care about being wrinkle free. Cannot catch a break. 

Eye Surgery Date!!!!!

 We have a date! Kate is having her eye surgery on Monday, March 18th. Finally. Kate is actually excited for this one. She knows she will still have to wear glasses, but her eyesight WILL improve. Now we just wait to see how much.

The surgery will be just like a cataract surgery. The lenses will be removed and replaced. Because of the Marfans, the is always a chance that the sutures holding the lenses in place will loosen. The surgeon is going to place back up, tighten these suckers back in place, sutures.  Hopefully, they will never be needed.

I'm sure we will have another pre-op visit, we just don't know the date yet. She has to use eye drops for a little while before the surgery, and have antibiotics as well. Sigh* Here we go again. It's better this time, just tiring mentally and emotionally.

Had to add some pics of the other kiddos lest people forget they exist. Noah looks like an Amish gunman, but he's really a gangster. Abby was the bride from the Haunted Mansion, notice the beating heart.  Thank you, thank you.  My idea.  Kate was Hermoine, and she knows how to use a wand, just check that out.

Life On Paper

 I realize that my life on paper really stinks. I won't even write it down for everyone to read, it really is rather depressing. Kate's diagnosis, my hearing, headaches and everything else, it's rotten, I won't lie. But the truth is, I'm happy. We are always told that attitude is everything, deciding to be happy when things suck. Well, guess what, it's true. I am on a site for those who have experienced a sudden loss of hearing and it's amazing to read about the different attitudes on there. Some people curl up in a corner and cry, change the way they interact with people, become depressed. Then there are people who seem to roll with the punches. They joke about how they hear things incorrectly, how they made a total fool of themselves at the store, etc. and they are happy.  Life isn't fair.  It just isn't. I can look at every family I know and point out their struggles. We all have them, we all signed up for this ride we call life.

Kate, she has an amazing attitude. Part of that I think is because she's a kid, but part of it is because we have learned to point out the positive things, and when the negative stuff happens, we say that really stinks, we hug and cry, and then we go do something fun. She's an amazing kid, all my kids are. I look to them for cues, guidance on how to live my life.

The day I found out I was losing my hearing was the same day of the shooting at the elementary school back east. Talk about putting things into perspective. I walked out of clinic, stood outside and listened to all of the noises around me. The wind was blowing. I remember thinking, I will miss this. I took a deep breath and walked to my van. My music came on as I started it up, I thought wow. I will miss this the most. Yes, I know, the sounds of the kids voices, the birds outside, the waves hitting the beach, there are many sounds to choose from, but my get me happy and dancing pick-me-up has always been music.

I told Abby that day that I was most likely going to go deaf. She started to cry. She said she couldn't believe that I would never be able to hear sounds at Disneyland again. When she said that, and I looked into her red eyes, I thought this is dumb. I am making my baby sad. I stopped right then, looked at Abby and forced a laugh. I said I guess we need to go a lot so I have every sound at Disneyland memorized! She instantly perked up. That was it. That was all I needed to know that how I handle this will affect everyone around me. So, I'm not sad. I'm really not. I get angry for a few minutes here and there, but I'm good, really. How can I not be? I am so very blessed. My life is freaking amazing!

I am in charge of the book at book club tonight. I started to find some discussion questions and looking at quotes from the book and just got thinking, which started this rant on here. The book is called The Fault in Our Stars by John Green. I read it  some time ago, and it literally said things I feel. Things about pain, about changes in life you have no control over, about living to the fullest. You should read it. And if you do, and you don't love it, you need to be seen by a doctor, there's something serious messed up with you. haha

Google quotes from John Green and this book.  So many great ones. Just a couple that spoke to me.

“You have a choice in this world, I believe, about how to tell sad stories, and we made the funny choice.”
 - John Green

“Even then, it hurt. The pain was always there, pulling me inside of myself, demanding to be felt. It always felt like I was waking up from the pain when something in the world outside of me suddenly required my comment or attention.”- John Green

This will be on the wall of my book store. As soon as I get my book store :)

“Sometimes, you read a book and it fills you with this weird evangelical zeal, and you become convinced that the shattered world will never be put back together unless and until all living humans read the book. And then there are books like An Imperial Affliction, which you can't tell people about, books so special and rare and yours that advertising your affection feels like betrayal”
― John Green, The Fault in Our Stars