Levi Update at 2 1/2 Years Old

I have lots to update regarding what's been going on this week, but it is late and I'm tired. :)  I did want to log the videos I took today of Levi though as a benchmark of where we're at. In the last month he seems to have had a bit of a growth spurt and jump in progress!  He is not saying "dada" regularly, but can with help. He is not saying his own version of "no" and many other words however, and really is using some key words to try and communicate. We are so proud of him!  The second video was just to document what Levi is like "freestyle" communicating right now. He was pointing at something out the window and I thought it was a bird or plane, but I never did figure out what he was pointing at. :( I can't wait for the day when we are able to hear and understand all that he has in that sweet little head!!

Talking and Healing

I went in for a post-op check up today, which was a few days early. I have been having quite a bit of new swelling and pain since Friday that had me concerned and I wanted to get it looked at. Good news! My doctor said that the scar and swelling is healing nicely, perfectly in fact. I was very glad to hear that. He said the swelling is from the filler he put in my cheek called Alloderm and that my body just takes some time getting used to the foreign material in it. I was relieved to hear that it wasn't fluid build up called  a seroma as a thought it might be as that can take a while longer to recover from. I'm ready to be over this whole thing!  He said that he was hoping that my paralysis would be better than it is right now (no improvement so far), but he tested all of my nerves during surgery and they responded, so he'd be shocked if the paralysis was permanent. 

I took this picture in the hospital and sent it to my
brother the day after surgery saying "Everything
 looks normal, right?" (Of course he said yes) I wasn't
going to put it on here, but Brian and I still crack
up at it, so I thought I'd share. Laughter is the best
medicine, right? :)

I go in for another check up in two weeks, so hopefully by then I'm getting some movement. My right eye doesn't close completely, which is annoying. I get soap in my eye every time I wash my face and it gets dry easily, but he wasn't concerned about this either and it should go away. I still have very low energy and am tired most of the day, but that is to be expected still even for the next few weeks. Please pray that I have the energy to keep up with my kids come Thursday when Brian's parents leave!  I still will have my lifting restriction for a few more weeks, but I'm hoping to teach Levi how to climb in and out of the car seat by himself soon. Beyond that, I should be able to manage not lifting him during the day I hope.

Speaking of Levi, he has had a very good week of speech therapy, really impressing his therapist at UNMC with cooperating and even initiating some sounds. It is still difficult for him to get the sounds out right, but his initiating the speech is huge. Praise God for that!  

Thankful.

Surgery was five days ago and I just now feel clear headed enough to post.  Anesthesia with a side of shock has made me a bit foggy the past few days. I sort of remembered what has happened, but not very well, if that makes any sense. That said, I will recap what happened and where things are now.

Last Friday I got a call that the surgeon was running a bit ahead, so Brian and I went to the hospital around 9:45, checked in, and then ended up waiting anyway until around probably 10:45-11 or so for me to go back to pre-op. I changed, got an IV put in, answered which side of my face needed surgery, my name, and birth date about 10 times, and got the chance to talk to my doctor. He didn't really say anything new or notable to me, but I didn't think he had his game face on and felt good about that. :)  Brian came in the room shortly after, followed by the anesthesiologist. He gave me something to "take the edge off" and I remember feeling that flow through my body. Brian asked him if he would be in the room the entire time during the surgery and he said yes. I asked him if he takes that time to play Sudoku on his phone during surgery and he laughed and said close, he looks at HuskerIllustrated.com.  I was close. He also said he looks at my vitals monitor every 20 seconds though. Suuuuuuuure. ;)  I don't remember anything after this until I woke up in the recovery room.

While I was in surgery, Brian and my mom got updates a couple of times from the nurses, basically saying everything was going great!  (As if they would actually say anything else....?)  The surgery took maybe a bit longer than three hours and Brian and my mom were able to meet with my doctor shortly after it was over. He said that the surgery took a little longer than expected because the tumor had a finger that went up in front of my ear that they hadn't seen. The tumor was also a bit larger than he had thought. He thought it had maybe been there a year and that it felt benign to him. He said he got a good clearance around it of tissue and put in some filler to the dent called Alloderm, I believe.  He probably said more than that too, but I'm not sure what else and I hopefully will get more information from him when I meet with him next week.

About an hour after surgery, I was moved up to my room and they were able to come up and see me.  The first thing I remember when I woke up is pain. My jaw was killing me and I just overall was in pain on the right side of my face. Morphine is completely worthless on me and they upped it for an hour probably and I was asking the whole time, can you just get me another drug please? Anything else? That took getting ahold of my doctor and then getting the drug brought up, so it took some time, I don't think I was pain free for a couple of hours after surgery. At that point I was doing OK for a little bit, a couple of hours maybe, then the nausea set in. I was extremely dizzy from the moment I woke up and tired, but the nausea hit it's peak around nine or so and then thankfully got much better after I got it out of my system.  I slept pretty well that night, waking up every hour but able to go back to sleep pretty quickly. Saturday was pretty uneventful, although I was very weak and dizzy and needed to get my hydration up before I could leave around one or so.  It was good to get home, but I definitely still felt like a hospital patient.

My new funny face. 

I came home with a drain tube, an ointment, eye drops, and a couple of bottles of pills. I have done OK since being home, but the pain has been more than I had anticipated and I also really hated to have the tube in and having to mess with that. The right side of my face near my ear and my neck was almost entirely numb until last night. I have just started getting feeling back, which feels funny. A bit like a foot waking up after it's asleep, just on a random and constant basis. Even now though, I still only have maybe 50% sensation? Maybe. That is normal though and the bottom half of my ear is completely numb and will probably remain that way forever. One thing I knew was possible, but hadn't anticipated happening is the paralysis or weakness I have above my right eye. It has bothered my eye a bit as my eyelid may not totally be closing while I sleep sometimes, hence the eye drops to help with that. My look of surprise looks more like an inquisitive look at the moment. This may take weeks to months to return, but they do think it will most likely. It isn't numb, just paralyzed. It's weird.

Last night I started having some issues with my drain leaking (sorry, I know it sounds gross) so today I went in to have it removed instead of tomorrow, which was great. They also told me then that the final pathology came back benign, so that is a huge relief!!  I haven't talked much about it, but radiation would have been much worse than all I've been going through with this surgery, so I'm very thankful that the worst of it is over and I can just recover from all of this and move on.

Thank you so much to all of you have been praying, offering help, and thinking of us during this time. It was been a crazy and fast road and I was telling Brian today that I have really been so foggy and in shock and focusing on getting through this that I haven't been thinking to pray for myself, as odd as that sounds. It is a great feeling to know that people are interceding on my behalf. Brian's parents have been an absolute lifesaver being here as there is no way we could have handled this on our own. I am still at a place where I have little energy to get around the house and attempt to care for myself, let alone cook and care for the kids, so it is such a relief knowing that I don't have to worry about that. For those who have offered to help, Brian's parents leave next Thursday, so we may need a bit more help at that time and I will keep you informed. I will still not be able to lift more than 10 pounds, which means things are tricky with handling Levi, but I'm hoping to have a bit more energy to try and help with the kids and meals. We will keep you updated. Thank you once again for praying and praising God with us that we have made it through and that it's not cancer!  I will update again next week once I meet with the surgeon.

Update - Surgery has been scheduled!

Your prayers are working already!  God was merciful and allowed me to get in and see a doctor yesterday! They said that openings never come up like that, so I am so thankful.  The doctor essentially gathered more information and confirmed what we already had suspected. After doing an ultrasound, he confirmed it appears to be "classic" Pleomorphic Adenoma. He said he would be surprised if it was cancerous, based on looking at the shape of it, but he took three needle aspirations (samples) of the tumor and I will hear the test results of that either late this afternoon or tomorrow. Please be praying that it isn't cancer. That would be "a whole new ballgame" according to the doctor in how aggressive he is in surgery and the treatment afterwards.  Some good news is that as long as it isn't cancer, he doesn't do radiation, so that's a relief.  Also, he won't know until he's in there and sees things how the surgery will impact my nerves and which areas of my face and the side of my head, but he did say that I will have a numb ear lobe the rest of my life as well as numbness possibly around that area as well.  I also will have temporary numbness in many areas because he was messing with the nerves. He actually said that helps the recovery to be less painful.

In the last week, I have also had a lesion appear on the roof of my mouth towards the back, essentially out of no where. He looked at that and said he would like to keep an eye on it. Depending on how it looks next week, he may remove it for surgery.

Surgery has been scheduled for next Friday!  I'm so thankful it will be soon!  Ready to get this thing out. I was actually in a decent amount of pain last night and am still sore just from him taking the samples, so I'm even more eager to get it removed. In the meantime, to prepare for surgery I need to go and have a pre-operation physical done on Monday, coordinate speech therapy adjustments for Levi while I'm out of commission, and finish up some work for my brother's companies' convention that I had been planning and am no longer able to attend.  Also, one of my other brothers is coming over this morning to frame a drywall a guest bedroom in our basement. Brian's parents are going to come for a while during this whole ordeal, and we're cheaply able to make them a guest room, so that's great.

OK, well that's it for now. Please continue praying if you think about it. Just one week away!

Taking the Good and the Bad

Forgive me if this post is a little disjointed, but I wanted to give an update on Levi and also share some bad news about me (Jenny). It's been a crazy week full off information and I don't want to get too far behind so I wanted to post, but I'm also a little flustered by it all and having trouble thinking clearly.

Levi - Good News!

Yesterday was our long awaited appointment with the Developmental Pediatrician for Levi and the appointment went very well. I'm not going to go into too much detail, but he did a very thorough evaluation of Levi and his conclusion is that Levi is on target and at an appropriate age cognitively and physically in pretty much every way. He had no concerns in those areas. Verbally, Levi is at a 9-10 month level. Verbally he is very weak, but he has much more language in there than he is able to express and be understood on. So, he essentially said Levi has isolated Severe Apraxia. At this time he thinks that any MRI testing, genetic testing, etc. would be overkill and not give us any information. Apraxia is very hard to understand and we don't know as much as we'd like about it, but it appears to be an isolated condition in Levi, which is a huge sigh of relief. That being said, he did say it is a hard diagnosis to have because it is a long, slow moving road and for us to prepare for lots of work ahead of us. We should keep doing what we've been doing and one comfort is that he told me to focus on encouraging communication from Levi in any from. Leave the speech therapy to the professionals and just really encourage Levi to keep in touch with communicating with the outside world. That sounds much less daunting to me than what I had thought I needed to be doing, so that is a relief. I asked the long term expectations for Levi, as an Apraxic person, and he said that it really widely varies. He expects Levi will be able to attend school, but will most likely need some type of augmentative device (think ipad) to help him communicate and be understood. He also said that it takes about 100-200 sessions of speech therapy before most Apraxic kids see any improvement, so to not be discouraged that it is very slow going. So, we are to keep doing intensive speech therapy with him, four sessions a week, indefinitely, and encourage him to communicate while not expecting him to speak when he can't. This all came as very good news to us and a relief. Praise God there is nothing more going on with him!  Oh, and the Dr., whom we were very happy with, said Levi will wear you out, but is very fun to be with. We thought that was a great, accurate description of him. :) 

Me - Not so great news....

Flying home from Ohio, I felt a lump in front of my ear on the plane while my ears were popping. I went to the Dr. that Monday and was told it was a swollen lymph node and it would go away within a month. If not, come back. Three weeks later, I went back to get antibiotics to spur things along since it hadn't changed. After finishing the antibiotic and seeing no change, I asked to be referred to an ENT. Last Friday, I went to the ENT who said he guessed it was a swollen lymph node, but it could also be a growth. Either way, it needed removal, but he wanted me to get a CT Scan to get an idea of what exactly was going on and the location. If it was a growth, as long as it wasn't in my parotid gland, a salivary gland, it would be a relatively easy removal. I immediately went to get the CT Scan and then Monday, Christmas Eve, we got the results that I did indeed have a tumor and unfortunately it is located in my parotid gland, which means major surgery. Wednesday, when offices reopened, an appointment was made for me at the Estabrook Cancer Center for next Thursday so I can meet with Head and Neck surgeons that are able to perform this type of surgery. Essentially the make a 6 inch incision in front of my ear and down my neck and then it's a 6-8+ hour surgery to remove the tumor. It takes a long time to remove it as that is the nerve center for your face and damaged nerves means facial paralysis. I don't know exactly when the surgery will be, but I'm guessing in about three weeks and I'm not sure how long I'll be in the hospital, but perhaps a couple of days. Recovery takes about 2-3 weeks and sometimes they do radiation to follow up, regardless if the tumor is benign or malignant, in order to kill of any remaining tumor that they were unable to get because it was wrapped around nerves.  There is an 80% chance that it is not cancerous, but we won't know most likely for sure until after the surgery.  For those who like to google what's going on, it's most likely something called Pleomorphic Adenoma, but if you google Parotid Gland Tumor it will give you an idea of the surgery. We feel very blind sided by this whole thing and are just sort of rolling with the punches at this point. Although we were are in shock, we know that we can handle it and perhaps will come out better people because of it. I read this scripture yesterday and was comforted:

"So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal." 2 Corinthians 4:16-18

We have been through some trials lately as a family, but those verses really sum up our hope. We are being prepared for an "eternal weight of glory beyond all comparison". That doesn't sound too bad, does it? :)  Working on not focusing on the seen, but the unseen, and praising God for it even when the seen is particularly discouraging.

Please pray for us if you think of it. It is a long wait until next Thursday and then the surgery beyond that seems far as I am so very eager to just get this over with. Also, pray that the tumor would not grow or worsen over that time and that radiation would not be necessary. And that the Dr. would have a steady hand and that I wouldn't have any permanent paralysis or damage from the surgery. Thank you! Love to you all! 

Recently...

Here are some pictures from my phone of the last month or so of life...

Our babysitter during our small group? Cars 2. 

Abby doing her best to be 15.

Speaking of which, here she is in Justice for Girls picking out her birthday and Christmas gift ideas to send to Aunt Dana.

Apparently Jonah took this picture at dinner. Levi was mostly likely running laps around the table.

Getting ready to take off to see Papa, Mimi, Uncle Mark, Aunt Steph and the cousins!

The boys deep in a game of football

Buddies

I love Levi looking at Toby in this one. 

Can't wait to meet you Elliott!

Goofs!

Heading home.

Little ducks all in a row. This kids having become travelling pros when it comes to going to Ohio.

Christmas shopping! And Brian doing an extremely awkward pose....

Levi saw this at Toys R Us and was smitten. A gift for the yuppy toddler.

Bath time. On the brink of disaster.

We went to a "German" Christmas market and could not get enough of these roasted almonds! We loved the Christmas markets in Germany! Someday we will have to go back.

Love these two.

Abby on her fifth birthday, wearing her new birthday dress from Papa and Mimi. Couldn't be happier.

Party time at her pick, the Amazing Pizza Machine with her two bffs.

Frog Hopper!  A crowd favorite, Levi's in particular.

Sweet girls!

Making sugar cookies. Yes, there are a few Star Wars cutters in there.

Even the camels couldn't keep Levi awake through the Westside Christmas Pageant.

Showing off his "look mom, I can hold the ball with no hands!" skillz.  He doesn't have to say it. His look tells it all. :)

Dada!!!

A very big day in our house!  For the first time in probably 6 months, Levi can say "dada"!!  He doesn't use it on his own yet and needs some prompting, but he can say it!  Right after we left speech therapy, Levi and I met Brian and Abby at Costco and had to show it off. You can't see it on the video, but dada is beaming. :) (P.S. Levi is a bit distracted as he's sitting on a super awesome jeep scooter as he's talking)