Thursday, February 21, 2013

February 21, 2013 - Update after Salt Lake Follow Up

We have returned from Salt Lake with some great news, good news, and some news that we will wait 3 months for the actual results to be completely in the clear.

 The great news is that from the neurosurgeons point of view, Matt is doing excellent. In his words, "He is doing far better than expected and exceeded all his expectations." We aren't quite sure how to take that, but we're ecstatic that he is doing so well. He was a little surprised to see Matt up and moving so much. He did ask him to continue to take it easy for awhile. He did take him down a dose on his seizure medication and he'll be off it completely in a week. They are also reducing the amount of steroids he takes over the next few weeks to be back down to the 5mg that he normally takes. 

The good news is that from the eye specialist's exam his eye sight is even better than before he had the's only good news because we have to return in 4-6 weeks for him to be tested for Pigment Dispersion Disorder. This is a precurser to glaucoma (I think) but won't affect him until he gets around 80. So, maybe they are just telling him that he's aging. This isn't that big of a deal just another "thing".

The news that we will wait for is from the endocronologist. Matt gave about 7 vials of blood between the two days and they are running tests which we won't get the results back till Monday. In one test, things looked good. They are still a bit concerned that his body might be in the state of Diabetes Insipidus. This is why he was in ICU for so long. He continues to drink about 300 ounces of liquid each day and therefore uses the restroom a lot. There are a total of 4 tests to look at for this. The 1st one was good, but the doc can't give a final answer till she reads them all. If his body is not in this state, then she said it's a behavior issue that will need to be mentally taken care of, like coming off of drugs and weaning himself off so much liquid intake. That sounds like fun!!! One small area of concern is his production of the hormone prolactin (I don't know if that's spelled right). His levels are elevated now and this is not a worry because it can still be from swelling around the brain stem. He will be tested again in 3 months and if his levels stay the same or go up, then he will need to have another MRI because that might indicate that there is still residual tissue left over and he might need surgery again. We are staying positive and will cross that bridge when we get to it. So, as of now, we wait for liver and blood tests to come back with some more information. The bottom picture is of his head and how it is healing, with which the surgeon was also very pleased. 

Sunday, February 17, 2013

February 17, 2012

Hair cutting and Mardi Gras (and yes, an update on Matt)...Oh My!!!!

Nana and Auntie Sarah took the kids to the Snow Fest a few weeks ago and I forgot to post this picture. I love the look on Cooper's face as he is yelling at Sarah to get into the sled. He was worried that it was going to leave without her and she wanted to take a picture. 

Scotlyn has been wanting to cut her hair and donate it to "Locks of Love". They require at least 10 inches and she wasn't ready to cut it up to her ears, so, she decided to donate it to a program sponsored by Pantene and does the same thing. She only had to cut off 8 inches. She loves it and looks very cute.

My school's annual fundraiser was held on Saturday, February 16, and we all had a great time. It was Matt & me, my mom & dad, my sister, Matt & Rechelle Hintze (friends of ours), and Debbie & Clark (friends of ours). We didn't bid on anything but did buy a bunch of cake pops for our table's dessert. We dressed up in an 80's punk rock theme and danced the night away. 

I love this picture of two of my boys. Cooper came in to snuggle with Matt one morning and gave him big kisses and a hug and sweetly said, "Daddy, when are you going to feel better?" Here's the part where I update most of you on the reason you're still looking at our blog. Things continue to remain the same as they did in the mid-week update. We are heading down to Salt Lake this week for two days of doctors appointments for some follow up tests and hopefully some answers for a few questions we have. Matt was able to see a GI doc who wasn't overly concerned with the way his gall bladder and kidneys were not working properly. He decided to take some more blood tests and see where we go from there when the results come back. We still have a long road to a full recovery, but the sun is shining and things are looking up for him. He continues to have headaches each day and hopefully those will diminish as time passes. The kids are aware that he doesn't feel well a lot of time and are very patient and good at trying to stay quiet. He has also noticed an indent on the side where they removed part of his skull. The swelling has gone down enough and we can see a visible difference from his left side. This will be another question to ask the surgeon when we see him. I'll post another update when we return from Salt Lake at the end of the week. 

Wednesday, February 6, 2013

February 6, 2013

Midweek Update:

Matt has had some really great days. He is able do some things out at the airport and help get the plane ready to go on trips, though he will not be flying. He still cannot lift a lot so I helped him the other night take an extra seat out of the plane and made sure he didn't over due it. I'm sure he loves being able to tell me what to do and where to put things!! We thought we were almost out of the woods but a second set of blood tests came back and they didn't look so good. This was the second time they had bad results. His liver and gall bladder are not working as they should so he is being referred to a GI doc and will need to have an ultrasound of his liver. They were hoping to get him in today. I can't imagine it has nothing to do with all the meds they have him taking!! This could simply be that these two internal body organs haven't got with the program yet and don't know how to start up again. I think both of us will be very happy when this whole ordeal is over and things can get back to a some what normal life. On the school's annual Mardi Gras fundraiser is next weekend and we are excited to be able to attend this fun event. A few of us are dressing up in 80's theme wear, which should make for some great pictures. My sis will be here for the weekend to help with the kids since I will be busy helping to decorate the convention center where we hold the event. I'm hoping with Matt's longer hair that he'll go as part of a Glam Rock band...I can dream!

Sunday, February 3, 2013

February 3, 2013

Matt's becoming quite the "Grizzly Adams". A lot of people have commented on his facial hair and said he should keep it. He hasn't decided when he'll shave.

Nana & Grandma Wendy took the kids to the new "Carousel" exhibit at the Museum of Idaho and they all had a ball. The kids all dressed up and posed for some pictures. The top pictures reminds me of a "Super Heroes" pose.

Grandpa Russ and Cooper snowplowing our backyard. 

Cooper seems to be the common denominator in these pictures. He is such a little ham. In the top picture, he asked Grandma to give him a foot massage with lavender oil. Below, he let Scotlyn dress him up as Justin Bieber then they continued to dance and put on a show for us to see. 

I know some of you are anxious for updates on Matt but our life is really pretty boring. He continues to spend his days sleeping and drinking a lot of liquids. He still wakes up not feeling well but improves as the day continues. His dad and he have taken a few trips around the town during the day, nothing too strenuous. We attempted an evening out with the boys Friday night while Grandma & Grandpa took Scotlyn to Sam's Club. He hit his head getting into the car, not hard, but enough to make it sore for the next day. That's got to be a big no no. Today was the first day he was left completely alone for a bit. Russ and Wendy had to head home and I took the kids to church. I'm sure he enjoyed the peace and quiet because he was asleep when we got home. I know he is anxious to start driving, this seems too soon for me, but the doc gave the ok. He will be putting around in his Jeep, which again, I think is too hard for him to drive, but he'd rather not take us to work/school that early to keep my vehicle. I don't remember if I posted this or not, but he has 4 weeks left of not lifting more than 10 pounds. He's trying to ween himself off of his pain meds and only take Ibuprofen. He has had some memory lapses, but hopefully that's just him plain forgetting. I've noticed some slight personality differences, but again, this could be the medication and it has only been just over two weeks since someone took part of his skull off and opened up his brain. We continue to take it day by day and are so grateful for all the cards and gifts that he has received.