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!
