Do I stay or do I go now?

Today was one of the harder days we've (I've) had since daddy left. So much is left on my shoulders. Every time daddy leaves something goes wrong, and this time is no exception! I turned in our paperwork for the appeal to Arizona yesterday. A part of me wanted to loose it on the way there. I'd love to stay here. I'd love to be close to family. I'd love to continue the services Jayen is currently receiving. I LOVE NEBRASKA, but Nebraska could mean one year without Matt. We CAN'T do one year without him.

No Fear We Have New Gear!

I've always had so many fears about using a communication device with Jayen. In my heart I feel that some day he will have verbal communication. I'm not sure when that is, but some day he will! I use sign language with him and try to always pair it with its verbal equivalent. When the school system suggested an iPad with a communication application, I was hesitant. I never wanted to teach Jayen how to communicate with something then it not be with him every time he wanted to communicate. I was also worried when we found out we were moving. The iPad he had been using belonged to the school district. All of the vocabulary pages we have created for him and he has learned to navigate would be lost if I didn't get him his own device before we moved. Well today a few of those worries are calmed. Today Jayen received his own communication device. We went with the iPad mini so it would be more portable for Jayen. Hopefully this will be easier for him to have it with him anytime he wants to communicate. We were also able to put his current vocabulary file on this device, so everything that had been programed on the old device is now on the new one. I'm excited for Jayen and what this opens up for him, but I am sill hopeful that some day I will wish he would stop talking!

What else?

I have a really full plate but for some reason someone thinks we should add more. PTC called and informed me that United Healthcare denied Jayen's physical therapy referral. They feel that since he is receiving services through school that he doesn't need them outpatient. I can't believe this thinking. My son receives pt services 4 times a semester for 15 minutes. That is a total of two hours for the entire school year, but that is sufficient for a child with severe epilepsy who regresses with each seizure? I now have to appeal this decision as well. More paperwork and more time out of my day to fix something that someone should have figured out long before I ever did. AHHHHHH!

Wednesday Fun Day

Wednesday is our only free day to do anything after school so we went to our favorite place...Vala's Pumpkin Patch! Mommy and Brilyn snuck here on opening day, but this was the boys' first time since we went with daddy before it opened. It was a little crazy going without another set of adult hands, but still well worth it.

 

 

Can't wait to go again! And if anyone wants to volunteer to go with us next time let us know!

Maybe next week?

Still waiting on surgical conference decision. Jayen was not presented this week. I put a call in to Carol to see what our next plan is. Jayen has had seizures three times in a week. They are more intense and are scarily close to the 10 minute mark every time. I'll have to continue calling until we get the next plan.

All alone

I was very nervous all last night leading up to my meeting today with Jayen's school. I had some concerns about lunch time and mentioned something to Ms. Shelby. Thankfully she called a meeting with Ms. Van Haute, but I was very nervous. I know we all needed to be on the same page but not having Matt there put everything on my shoulders. I'm always nervous that I will leave thinking, "Why didn't I say that? or Why did I say that? or Did I do everything I could for Jayen?" The meeting went well. I felt like they listened to my concerns and we can make a few adjustments. After the meeting Ms. Van Haute was chit chatting with me and I was just telling her about our home life and how crazy things are. She said she has lots of connections and might be able to find us some great respite providers. I hope that pans out. I'm in desperate need of great help. We have Heather, but our Medicaid respite is not really working out right now.
I didn't know how long the meeting would take, so I didn't cancel the bus. I'm now wishing I did! We left school and hurried home so Jayen could catch the bus. I wasn't sure if I should call the bus barn or if it would sound stupid that we are running late because we were at the same school you are picking him up to take him to. Well, about 5 blocks from the house Ms. Sheri, the para, called and asked where we were. I told her we would be there in less than a minute and she said they were just taking off! AHHHHH I missed the bus by less than 60 seconds. I turned around and headed straight back from where I just left.
After dropping Jayen off, Brilyn and I had a few errands to run. We were in the return line at the second store when I heard a water sound hitting the floor. I knew without looking what had happened and I was mortified! Brilyn had just peed on the floor at Gordman's. The cashier was new and had this mortified look on her face. Our eyes met and she saw the mortified look on my face. She had no idea what to do. Another employee called for a mop bucket, Thankfully! Brilyn was all smiles and had no shame in what she did. Then to top it off, she was playing with a rack of socks when she swiped at them and two pairs fell straight into her pee pile.
Our day was looking up when our friends Sara and Grace came to the house to hang out and help paint. We were able to finish the boys' room in the morning and enjoy a great vegan lunch. I have to admit I had never had tofu. Sara needs to teach me some recipes! I really liked it. After lunch we said goodbye to our friends and tried to take naps. Jayen always has a different idea during nap time.
All good things must end but I never like the ending I received in an email today. I talked to our respite provider at least three weeks ago about setting up respite twice a week. We really wanted Carleigh but she is only available Monday nights after 6:30. We are taking what we can get with her because she is so good with the kids. We also asked for Thursday nights. This week Carleigh had some car troubles and couldn't get to us. I wasn't informed of these car troubles until I called, text, and emailed the owner. He finally got back to me but only told me that we would have to wait and see if she would show up at all. Then tonight I get an email saying they haven't found anyone for tonight yet. WHAT? I thought this was every Thursday. You should be lining up every Thursday from now until Christmas! How is this happening? I really need to find a better provider. I'm so sad that I'm left with this situation and thought I had so much support only to find out I'm totally alone.

A solution to the problem but another problem

I talked to Rebeka from Behavior Matters and was informed that Jessica is going to step back a little bit until she gets some more training. I felt comfortable talking to Rebeka about the issues I had experienced with Jessica now that she wasn't going to be at the house anymore. I did tell her that I was still comfortable with Jessica coming to the house tonight to finish her last session with us and then we would have the new person start on Thursday. But after receiving a message from Jessica apologizing for not being able to make it tonight because she resigned, made me question. I replied, "Oh no. Why?" I once again was not prepared for her response. She talked bad about the company again and suggested that if I were to continue services I had to use a friend of hers. I was thankful that she would no longer be in our home. I am also nervous because once again we are starting with a new person. I'm sure she will have to take a few days to observe again so he won't actually receive services for a few weeks.

Let the countdown begin

I received a call today from the EFMP office here at Offutt concerning Jayen's travel to Luke AFB in Arizona. I wasn't prepared for what he was going to tell me. Jayen's travel was denied. He is not allowed to go. They feel they do not have the facilities comparable to the care he is currently receiving in Minnesota. What they heck. You just sent my husband away for three months and now you are telling me it could be for nothing. I'm not sure what this means for us. I was informed that we have 21 calendar days to appeal this decision. We are so worried! We have done all of our research for Arizona. We have found what we felt was appropriate service. We are going to appeal the decision. I'd love to stay here but staying here could mean losing Matt for an entire year. I'm struggling with the couple days he's been gone already, a year would be impossible. I guess we can add one more thing to my plate. As if keeping three kids alive, painting, staging, and getting the house on the market, and now appealing this decision weren't enough.

She said what?

I've been trying to love this ABA therapy. Yes, trying! I am new to ABA and not sure how everything is supposed to work. The company we are using is new to the area as well. They are originally based out of Alaska and saw a need, through another family, for services here in Omaha. The board certified therapist in charge of Jayen's therapy is actually stationed in Germany right now and the other person in charge is in Florida. I'm not sure everything was in order when they started their practice here and I feel there isn't a lot of overseeing of staff working in Nebraska. We have a therapist who has done ABA therapy for another company in another state. She is very loving towards Jayen, but I'm not sure I love her teaching style. She often seems more interested in talking about topics completely unrelated to Jayen and sometimes even talks down about the company. Today I expressed my concerns about how she was teaching Jayen sequencing. She had some picture cards that she wanted Jayen to place in sequential order, but would introduce them to him as first next then last. I know that is a skill we need to work on as well, but I would think we should introduce what those concepts mean. I asked if she thought he would understand the sequencing if we introduced them as numbers; 1, 2, 3, and 4. Along with that we could say number one comes first, etc. This would introduce the concept of ordinals and sequencing. But I think the icing on the cake came when I was trying to explain a situation that came up today with the military. She is a military spouse and understands slightly what is going on, but proceeded to tell me she thought the situation was "retarded". I tried to pick my mouth back up off the floor before she saw my disgust for what she just said. Really? You work with special needs kids! You should know what that connotation suggests. It might not be meant with the same hurtful emotions as others who say it, but it is slang and the meaning behind the word is hurtful and disgusting. I'm not sure what to do anymore. I know that opening my mouth could mean that she wouldn't be our therapist anymore, and I know that we could always get something worse. Do I just leave things alone for three months? I have too much on my plate right now to even make this an issue I can handle. As long as for the time being Jayen is taken care of and isn't subjected to that language.

Goodnight and Goodbye

The weather outside tonight matched my emotions inside. We had torrential downpours and tornado watches, so we kept daddy safe at home and wouldn't let him leave until the weather was better. The interstate was under tornado watches until 1:30am so daddy came home after a little date with mommy and took a quick nap. We were able to get home around bedtime and give the kids kisses and hugs.

 

 

 

Dalan was very upset telling Matt goodbye. I don't think Jayen and Brilyn really understood that daddy was leaving and not coming back for a long time. They were excited to get big hugs and kisses instead of going to bed! We love you daddy and can't wait for you to come home. We aren't sure where home will be when you get back, but as long as we are together we are home. Do your best and make us proud!

Great family time with daddy!

After church we decided to make the most of our last weekend with Matt. The kids had been asking if we could go to the "sock place" again. Mahoney State Park has an amazing activity center. All the kids, big and small, love this place. We packed lunches, ate in the car on the way to Mahoney, then crawled our hearts out. I can't get over how well Jayen does here. He is a climber and would probably be able to climb the outside if allowed. Dalan was being such an amazing brother. He would stay behind Jayen and offer encouragement and an occasional push on the butt when he needed help.

 

 

After Mahoney we headed to Lincoln to try to catch one of Issac's football games. He was so cute in his pads. The boys, once again, were being so good to each other. It was such a great day spending time with daddy. We are all going to be heartbroken when he leaves. 

Emotional mommy and (what?) an emotional daddy!

We have been counting down the days until Matt leaves for training. We are devastated to see him leave, but that is the sacrifice we have chosen as a military family. I've been trying to hold it together and not let the kids see how much this upsets me. I hope I can be strong for them. This is going to be hard on all of us. We will get through this and will hopefully be stronger because of it.

Daddy is getting everything ready to go and doing everything for the last time. Today was daddy's last game as Jayen's coach for his All Play team. Tom and Tanya and family made the trip down to watch the game too. They wanted to support Jayen and Matt and our entire family. It was so nice having them here. I know they will be a big help while Matt is gone. After the game we quickly headed home to catch the end of the Husker game too. Thankfully they pulled off a win and we didn't have to see crabby daddy, which made for a better evening!

 

 

After naps, we were being kicked out of the house by Tom and Tanya but we had a better idea in mind. We were going to set up a movie in the back yard, but the bugs were horrible. Matt worked so hard on getting the garage clean, I think he was excited to be able to host a movie there. This was so awesome! (Pun intended, since we watched Lego Movie with the kids and there is a song called Everything Is Awesome)

 

 

 

After the Lego Movie we put the kids to bed and the parents watched Heaven Is For Real. I wasn't sure what Matt would think of the movie. I really wanted to read the book first, but reality set in and I knew that wasn't going to happen. Emotional overload took over my body. I think I was crying through the whole thing. It really made me think of Jayen and all he has gone through. What has he all experienced but just doesn't have the words to tell us? Did anything happen to him in surgery? Does he/will he believe in God?

I was a wreck after the movie but what happened after took me back even more. When we went to bed, Matt leaned over and asked me how much of the movie made me think of Jayen. I smiled and said all of it. He then proceeded to tell me there were a couple parts that made him tear up. WHAT? My strong husband finally cracked. I know I have seen him emotional before, but I couldn't tell you when. It just doesn't happen that often. I know how much Jayen's disability affects me, but I don't often know how if affects my husband. I of course, cried myself to sleep after that. This journey has been tough, but we will get through it together, and be stronger because of it!

 

Our newspaper debut!

This past summer my parents joined us for a parade in Papillion. During the parade a volunteer for a politician seeking election approached us and asked us to vote for her candidate. I immediately asked what his position was on medical marijuana. I think this has left an impression in my mom's mind since that day. She mentioned something to me after the parade about how Jayen is always at the forefront of my life and she is proud of the work I am doing for him. I think she wanted to take action and play that same role for him. A few weeks ago my mom took the initiative to contact the Cedar County News and the Norfolk Daily News. She was hoping that one of the papers would run a story on the Nebraska Epilepsy Walk we were going to do that weekend. After meeting the families from northeast Nebraska in Minnesota and realizing there isn't a lot of awareness around the area, she thought this would be an amazing story for the paper. Neither paper contacted me before the walk and I think my mom was very disappointed. The following week I did however receive a call from the Norfolk Daily News. They were hoping to do an interview about our family to run in the paper. I wasn't sure what direction the story was going to go, but was up for anything that would bring awareness to Epilepsy. The story was published today and I'm so excited. It was a nice article, but the words of my family and friends who have shared this story on facebook have touched my heart tremendously. I hope this does bring awareness to my hometown community. I hope that if marijuana does come to a vote in Nebraska that someone will remember our story and think twice about their decision and who it might affect.
Thanks mom for setting this up. You play an important role in Jayen's Journey and I don't know where I would be without you.

Family looking for answers to control epilepsy
Click on the link to view the full article!

Humming conversations

This past week Matt and I have noticed Jayen trying to talk to us in a humming fashion. It is as if he is humming an entire conversation. Sometimes it goes on for minutes. This is such a big step for Jayen. I've been trying to get it on video but every time I get the camera out someone feels he needs to ham it up! He does it again here, but at the very beginning of the video you can hear him humming his conversation to me. I'm so proud of the progress he is making!

 

Jayen started ABA therapy this week. I forgot to write about it on Tuesday, but we mostly just observed Jayen to see what specific goals we would like to focus on. Today was our second visit and it was pretty crazy. We had the realtor here during therapy so there was a lot going on and Jayen's attention was elsewhere. I'm very interested to see how all of this is going to work, and also how it will work into our schedule. I'm overwhelmed and not sure I will get through these next few months alive. Praying for strength and guidance! AND PATIENCE!!!!!

Busy Extra Long weekend!

This Labor Day weekend was jam packed but so much fun! Mommy and daddy had tickets to the first Husker game of the season. Sad we couldn't get them for the entire family but so excited for the date night with daddy and the kids to have a weekend with grandma, grandpa, aunts, uncles, and cousins. We drove to grandma and grandpa Kuchta's Friday evening. Saturday was the game. The kids watched on tv for mom and dad; they didn't see us!

 

Sunday was Madison and Hunter's birthday parties! It was a tie dye and turtle party. Dalan dyed some socks! Jayen and Brilyn loved playing on the teeter totter. So much fun spending time with family! After the birthday party we headed to Yankton to meet up with our friends the Kapla's! We met this family when we were in Minnesota this last time. We were so excited to give Sydney her present. When we last saw them, she had just got a new doll from the American Girl store, but was a little sad she didn't have a bed for them. Well, the Hochstein's had the best gift ever! Sydney asked us if it was a kitty, because she really wanted a kitty. How funny that we did actually have a kitty; an American Girl kitty, a dress, and two beds for her American Girl doll! I had been trying to keep this a secret from Jenny for about two weeks, so I was excited to finally give it to her. I was excited to see Sydney's face too. I think she liked it!

 

Chad had to teach the boys some hockey moves before we left. Dalan really picked up on it fast. I think if we hang around them too much I'll have to find a hockey rink in Arizona. Why do I feel that might be a near impossible feat?

 

 

We didn't want to leave the Kapla house. We feel so welcome and loved there. Their boys were so amazing with our boys and Brilyn too. They have done a great job raising some amazing children. They truly are amazing friends and I know God (and my Uncle Terry) put us in the same place at the same time for a reason. We didn't want to leave but stayed longer than we should have. We wanted to drive back to Bellevue so we could have one day as a family without so much running around.

 

Our Labor Day started a little slow. No one wanted to move very fast! We made plans with our friends the Loftus' to fix their carpets while we still had the carpet stretcher then hang out at a Storm Chaser's game. They too have been sent by God to be near us. I cry just thinking about everything we have been through together. Renee is so good about keeping in contact with me and keeping me positive about life. What a spectacular friend she is and always will be. I think the best saying for her is, "Although we may be miles apart, we are together at heart!" We are all sad about having to say see you later, but I promise we will stay in contact and see you whenever we can. Today was so wonderful to spend with this amazing family. Our days are numbered but I'm so glad we were able to spend it with friends.

 

 

What a busy, fun filled, extra long weekend! One of the best of my life! We are so blessed with the most amazing family and friends.