I am always proud of Jason's work, but thought I would post some pics of the deck Jason built for Grandma and Papa. They had a deck on their house, but he extended half of it and screened the larger half. He also installed french doors from the screened in porch to the dining room (was just a window).
Balcony for grilling
Hopefully, if our HELOC comes thru, he'll get ours started too - since ours is technically a hazard at this point. Of course, ours won't be this grand, but I have no doubt it will be wonderful!
We celebrated with Papa and Grandma, Granny, The Isaacs, the Philip Caines, us and some Covenant kids. The David Caines' joined later for a late dessert.
Mac was in flu quarantine
Apparently, I didn't take a lot of pictures, except of the crazy game, Mind Flex Duel, that Uncle David brought. The object was - the more you concentrate, the more brain waves you produce and the faster you move the object in the center. Not sure if I believe it, but it was hilarious!
It has definitely been a long day. Jason worked a 14 hour day Saturday trying to get our shower completed (which had a major leak and had to be ripped out completely and re-tiled) and then he had to work on it Sunday also. I tried to help the best I could, along with cleaning and packing for our trip to Cincinnati, and doing laundry for the kids left at home - since I felt unsure about our exact timeline. On Sunday, Jason worked from 3 until 2:30 AM on Monday. I worked with him until 1:30 AM until I couldn't go any longer and knowing I had to get up at 5:30.
The kids got off to school without a hitch this morning and we got on the road around 7:45. The trip was easy besides the fact that Jason and I were half asleep. About half way thru the trip we were both regretting the long weekend, but we both didn't want to come up to such a mess of a project. We made it to Cincinnati by 12:30, found the hospital just to make sure we knew where it was and then we grabbed some lunch. Our appointment was at 2:00 and we signed in by 1:30.
Dr. Wesselkamper (no joke, his nurse was Nurse Fledderjohn) had reviewed our file before we arrived. He had already talked to the Ataxia (this is another word for dizziness that all the doctors use to describe Daegan's movements) Specialist, Dr. Wu, also from Cincinnati, that we were scheduled to see in January. I had also sent a mom journal of what I have seen over the last ten weeks and my opinions weekly of ups and downs and he had clearly read that. He had done his homework.
Dr W got to know Daegan and asked us questions and asked Daegan questions and did motor skill tests, etc. He sat with us for 1 1/2 hours. Dr W analysis is that Daegan's initial 3-day migraine spiraled him into the severe dizziness. Then, thru dehydration (a concern we were dealing with under the watch of pediatrician at the beginning) his brain couldn't come thru it all and he developed the ataxia. On top of puberty and his OCD/anxiety personality, and us "protecting" him and not pushing him to do more for fear he would fall, his brain has assumed the ataxia and inactivity is the new norm.
Dr. W says he sees about 5 cases a month like this. Not many come with ataxia as the problem, but they often come with different twitches (eg. eye twitches, motor tics) that the brain has developed, but they typically show up with kids around age 12 and are seen in kids that are overachievers, OCD, anxious kids. It will happen with some trigger (Daegan's was the migraine, others can be a traumatic experience) and you have to recalibrate your brain if you can and treat the issues that caused the trigger to stop the symptoms.
What does that mean? First, we will put Daegan on a very low does med that will help prevent the migraines (this has been his first experience with migraines, but mine began around age 12). Second, we've been encouraged to have Daegan see a child therapist for awhile to help him learn to deal with his OCD/anxiety issues. Throughout this entire ordeal I have said that Daeg is my silent worrier. And, OCD - absolutely! And Third, he just has to get back to school. Initially, it will just be half-days. But - this explains why once he decided to make his love of reading a priority and his time of being able to do it has extended from 10 minutes 6 weeks ago to now he can read an hour at a time - he still sticks to easier things that he knows, but he at least has been pushing himself and it has been working. And this seems to explain why.
Dr. W says this will take months. And, initially, it might seem like it is getting worse. But he discussed this with Daegan and explained to him how to handle that at school, and I think that is huge to give him that expectation! The Cincinnati office will be in touch with CCS and discuss how they want things handled and how they want Daegan pushed. We will be in contact with them throughout the process and Dr W wants to see us again in February.
So, what about the lesion on his brain? That is still a question. That is not being ignored. We are going to have another MRI in February before our next Cincinnati appointment and see if there are any changes to the lesion. Dr W will review the actual films together at the next appointment and compare the lesion readings. If any major changes, we will obviously deal with it then.
After our appointment, we found our hotel and crashed! At 6:00, Daegan was desperately trying to wake Jason and I up so we could go get some dinner. :) We went to Logan's (Daegan is being treated to a lot of things that would never happen with the whole crew) and he got ribs. Now we are crashed in the hotel with no hospital tests staring us in the face for the next day. We will take a slow morning getting out of Cincinnati and head back home at some point tomorrow.
Thanks for your prayers, texts, calls, FB messages, etc. We have felt them all and I have shared them with Daegan along the way. He seems immensely relieved it is nothing "major" and that he is not getting a spinal tap tomorrow. Jason and I are relieved of the same thing and we are looking forward to eight hours of sleep tonight.
I feel like I am still processing this diagnosis, it is a lot different than what I was anticipating. It seems a little bizarre, but as I've thought about it the last six hours, so many things make sense over Daegan's fluctuations of good days and bad. We pray for God's guidance on the next step.
We were hoping for Vanderbilt because it was closer, but we were hoping for Cincinnati Children's Hospital because it is so much better. We got appointments at both in January, then Vanderbilt moved us up to December 11th. Then Cincinnati called on Wednesday and asked if we could "come tomorrow". They were kind enough to understand my no and get us in on Monday instead.
So, we are headed to Cincinnati!! My direction-challenged self wants to say that Cincinnati is soooo far away, but I am told it is a little over five hours away. That is doable.
From late Wednesday when the appointment was made until this weekend before we leave, I am at peace. I am excited for a REAL doctor to look at our case (our pediatrician is awesome but is the first to admit this is way out of his league and the neuro we saw here was less than stellar) and I see a spark in Daegan. He is ready to move toward a goal. Up until this point, he has asked me each morning - after we appealed the January apt - "Did Cincinnati call to change our appointment yet?"
He is ready.
There are so many pieces to this puzzle that the Lord has laid out perfectly. I don't know why this amazes me - His plan is always perfect!
I was nervous about Cincinnati vs Vanderbilt because of our insurance, but I was told today (still feel like I'll believe it when I see it) that since we have Blue Cross Blue Shield PPO, that our plan is covered at this hospital and it isn't considered out-of-network. Still going to be paying a lot but not as much as I thought it would be if it was out-of-network.
The doctor we were going to see in January is THE Ataxia Neuro at the Cincinnati Children's Hospital, but since we got moved sooner, we are going to see a general neuro just to get our foot in the door. When I looked our doctor up online, one of his side specialties "just happens to be" ataxia. I know The Lord is leading us.
The week we are going is indeed Thanksgiving, and that is a bummer, but it is a great week for me not to worry about the kids. It stresses me more to worry about them getting their home work done for someone else and to be shuttled back and forth to school and soccer, etc. But none of that is going on this week. Full day of school on Monday and then Tuesday is Grandparents (half) day. Philip and Sarah and kids volunteered to stay at our house to have a big slumber party, which is less stress on my kids and also takes care of the "what do we do with Omar" question.
Another expense while we are gone is the hotel stay. When I called the hospital to find out what hotels were near the hospital center we are going to be at, they offered to make our reservation for us, which was 50% off the regular price for patients.
Jason and I have also recently become agitated about some tests that were not run on Daegan (long story), but in hindsight I feel it is best. I think if those tests were run and a diagnosis was made then we would be stuck with the neuro here to treat. I am glad to go to Cincinnati to get a proper diagnosis that I feel confident in and have a doctor there that we will continue to use for treatment if necessary. Even in our frustration, I feel this was a protection from God, pushing us toward Cincinnati.
We have also been extremely thankful for our CCS family. Throughout the past two months they have been patient with Daegan's schoolwork, expressed prayers and love to me in the halls, sent me messages often of "I left a casserole in the teacher's lounge for you - Enjoy!" many, many times. I couldn't ask for better support. It has been incredible and has relieved a lot of stress from me.
So, we look toward Cincinnati!!! I hate traveling away from my babies (yes, they are all my babies even as teenagers) but I love medical. I typically take it head on! Jason hates medical and hates traveling, but he loves me and I need him there. And he is a good different perspective for the doctors when they ask questions. Daegan is ready! And he is excited about staying in a hotel! With an indoor swimming pool! And he understands he isn't getting a magic pill to make him better and he understands he will probably endure some yucky tests, but he is still very excited!!
I've got my theories about Daegan that I will not share here. I've got my list of questions and my list of tests I'm already planning to ask for/about if they are not suggested. I could get no where with the neuro here, but I am praying the neuro in Cincinnati will be smart and attentive. I feel at peace we are heading to an incredible hospital and my prayer is we can get some answers.
This semester Mollee has Industrial Arts. A little scary thinking about her cutting wood after she got stitches last Christmas opening a box with scissors, but she has had fun. And, I know Mr. Fordice, safety is required!
Here is the box she has been working on this semester:
She didn't offer it to me, but instead put it in her room! :)
I like to wear flannel shirts in the Fall as a extra layer to my jeans and t-shirts. I have three flannel shirts. And they all have a special place in my heart.
The one on the left belonged to Freda Lowe, a very special lady that passed away a year ago today. She meant so much to so many people and she just happens to be the mother of my sister-in-law too. I was honored to get a few of her things.
The shirt in the middle was a flannel I stole from Jason twenty years ago. And, yes, I still have it and still wear it. When I just happened to show up at my brother's cabin often, as a freshman in college, one night I needed an extra layer of warmth. It seemed better to borrow Philip's roommates shirt rather than Philip's shirt - and never return it!
The one on the right belonged to my Grandpa J. He passed away last year and this was one of those things that really made me think of him. I was extremely pleased no one else put "yellow flannel" on their wish list as his things were being passed out.
People send me verses at random times throughout these days for encouragement. I slip them in my wallet or in my jeans pocket or coat pocket so I can pull them out on a day I might need to see them and I'm not looking to the Scripture. This one came today.
Joshua 1:9 "Be strong and courageous. Do not be frightened, and do not be dismayed, for the LORD your God is with you wherever you go."
As Daegan struggles to read and struggles to do math, he does not struggle to do Legos. I do not understand this, but I am told that because the instructions are pictures and it is building, it is more kinesthetic and is totally different from reading and math, so it makes perfect sense. I don't fully get it, but I do know that it makes him feel good that he can still do something.
A friend sent him some sets in the mail and it was a serious spirit-lifter!!! Look at that smile!
Something else that brings on smiles is Face Time. It is hard to send Daegan to school because too much overwhelms his brain and it can take him days to recover. Short spurts are ok if he can get a mental break afterwards. The school has been awesome and we are doing some lessons at home as we can and they are doing Face Time for some assignments/lessons. Daegan really feels part of the class again when he can do this.
Waiting on God's timing for a doctor to helps us find answers. Until then, we are doing what we can and we are thankful for technology!