Cleaning house and people come through

So after my post I came home today with a map drawn out of the house and a final plan! I presented it to Mike and well...took charge. The plan is to bring the twin mattress down from our guest room. We are going to get a twin platform bed to put up against the window wall in our living room. We are then going to purchase kids first safety railing to put on the side. It will be perfect and cost efficient! We will be moving the twin from what was suppose to be Jude's room as a baby. We all know that plan got nixed, but that's okay because he has an incredible room now. We are then going to paint the walls in his old room.  I told Mike we are selling the dresser, the twin bed frame, all Jude's baby bedding, and the items on the wall. He looked at me and I put my hand on him and said, "It's time to move forward". We have been very attached to Jude's baby items....all of them, because they are material items representing what his life was suppose to be. I explained that it's time to let those go and celebrate what his life IS!

After we move out those items we will be painting that room and it is becoming the Regal Princess/Emily's Smile Boxes headquarters. I am then re-decorating my little loft area........I AM SO EXCITED! I get to decorate :). I am moving our wicker chairs and antique table into the loft. We are either having one large garage sale or selling it all online. Jude will then have his own platform in the living room for his place during the day when he is not in his stander (loaned) or in his tomato seat. We are also getting lots of buckets to organize all his toys and therapy items in the living room. Aw, I can breathe again. I feel so light.

Jude is lucky. I had someone point out that Jude has a lot of equipment and I definitely see that and I am very thankful. So don't get me wrong when I moan and groan it just makes me feel better.  Some of it like the nursing was a huge battle, but very worth it. That was a rough two years without any help and I know families care for those with special needs without any help at all. I am not trying to be a hero here and I gladly welcome in our nurse everyday.

I also got some advice on the van that will help.  I just needed to find financing and we are making progress. After we get the rooms painted I am calling in for an estimate on the bathroom. I think we can get that done in January. We are moving forward and I am excited! I really feel like everything is falling into place and it's all positive steps from here.

Progress and therapy equipment

Day 3 of getting healthy and I already feel better! Last night I walked about 3 miles which was great. Today it's chilly in TX and I was happy that Jude got to stay home in his cozy bed today versus going to school. They were having a teacher in service day so the teachers asked if he could attend school tomorrow vs. today. Jude also slept fairly well last night, but he gave me issues with going to bed. It's strange how he goes through cycles, I guess we all do that in life. He truly acts like a toddler at times that doesn't want to go to bed. I was happy he slept and so was my body! I feel pretty rested today. A lot of my rest can be credited to Charlotte who still allows me to sleep for half an hour in the morning before I go to work.

So I am on a mission to make Jude's life and our lives as easy as possible and as beneficial as possible. So I am reaching out to my blogger community who have always been amazing. We are having difficulties getting a wheelchair accessible van. This as you know has been an on going issue. Due to Jude's situation and Mike's jobless situation for two years our financial situation was RUINED! I have a good job, but I couldn't finance an ice cube (hey being honest right? ). It happens! Losing a job or a tragic situation can cause financial devastation. This doesn't mean anyone reading this blog is any better than I am because you can obtain financing. It just means our situation is a bit more difficult. I will find a way to make it work (I always do), but if you know of places that help with financing it would be great to know. After the first of the year I plan to trade my vehicle and obtain a van.  Next, we need to get quotes from a reliable contractor that will work with our situation on converting our closet into an accessible bathroom. We discussed various methods of accessible bathrooms....converting our bathroom, converting the half bath, but even Charlotte agrees this is the best route. The half bath is to small and our tub is not conducive to what Jude needs. Therefore, we are converting our closet and building a wall closet in our bedroom.  We believe a roll in stand shower with a bath chair will be the best for Jude.  Mike's brothers are also very handy so they can help whoever starts this project. We may not be able to follow through until next year, but we need some quotes from a reliable source.  Next we are getting the platform "bed" for Jude for our living room. We are basically just discussing models and sizes at this point. Jude would keep his existing safety bed for his room this is just for day time. In addition I have an amazing insurance client at work that owns an upholstery company and she is providing Jude a larger exercise mat for therapy. I also placed more phone calls to various therapy companies to try to find the physical therapy and speech therapy in home. We will then work on the aquatic therapy. I believe the aquatic therapy will have to be with his teacher since I still work. Jude may be limited because of his lack of head control and speech, but we are determined to give him every opportunity we can.

The great news is that when I asked Jude if he wanted mama last night he started rubbing his left cheek. If you remember ... that is the sign I taught him for mom. I am still working with him on a sign that is easy for him to remember for dad. If you touch his chin he opens his mouth and his cannot get his hand to his forehead so I am still working on finding a good sign for dad and sissy.

Anyway, I am a busy bee. I know we will be having a meeting with Jude's teachers within the next few months regarding this progress. I look forward to this meeting.

Where is Emily?

Tonight I was cleaning up around the kitchen and Mike emerged from playing his new video game (don't get me started on that subject).

Mike: Where is Emily?
Me: She went upstairs to take a bath and I am not sure what she did after that
Mike: Is she feeling okay?
Me: Yes, I think she is just becoming a teenager
Mike: So I don't have her down her hanging on me..(pause)... EMILY I AM STILL COOL YOU KNOW (he yells upstairs)
Me:I know I guess she won't be down here all the time...I giggle

Then we both pause

Me: I miss her
Mike: Me too
Me: We are in BIG trouble...

Emmy soon returned to hang out for awhile, but she then ventured back upstairs. Luckily she is still pretty attached to me and likes to sit in the same seat I do. Not sure what I will do when she goes away to college, but I think we got a very quick glimpse into the future.

getting healthy, an unhappy Jude, and living life!

Well I promised to always be honest on my blog so here is an admission. Everyone says that I seem so put together to be honest I am not always. I have struggled with everything that happened on a continous basis. I have worked through a lot, but I still have issues.  I don't work out like I used to due to time constraints. I have a real hard time falling asleep so I have probably to much wine to remedy that. So I am getting myself back on track. I am determined. I have noticed some health issues and I am getting myself back into my work out routine and eating healthy!!! I am enjoying my life and every part of it......or at least I am going to try. I struggle with life not turning out like I wanted it to. Not being able to stay home, have more kids, etc. It's selfish, but I admit I struggle with it. Time to realize what I should be thankful for and get back on track. Time to do the things we wanted to do and include Jude if possible. I am also determined to find Jude's accesible van soon and get his bathroom converted like we knew we would have to due to his size.

Last night Jude was a little STINKER and I realized that he has bad days too. He was grumpy and would not get settled. He didn't want to be held, put down, or in his bed. He only wanted on his tummy and he couldn't stay there because he was rubbing his chin raw. So somedays even little Jude cannot be satisfied.

I am actually enjoying today even though it sounds like I am down. I have been walking every night. I am now eating healthy again and our future is looking much better. I know that Mike will eventually be promoted at work and I think things will be so much better!

We are also going to ask for Jude's flotation device he needs for aqua therapy for his Christmas. I am truly excited about this and can even take him to my cousins to participate in family day over there. I think Jude could do SO much in the water.  

After I wrote my blog I logged into my email and my aunt had sent me the following you tube link. Wow doesn't that put your life into perspective.

The big night away and more

So this past weekend Mike and I went on our overnight anniversary excursion. We didn't have definate plans on what we were going to do other than stay at the Marriott in Dallas. Once we got there I noticed the Dallas Aquariam was right across the street. Mike was not to thrilled that I was "making" home go to the facility. However, once we started our tour he was very impressed.

We really liked the shark tank!

 Mike had to get a close up of the Jaguar being a boy. I mean really???

After the aquarium we went to the only place where everything you could possibly eat has been dipped and fried....the Texas State Fair.

 Mike says fried bananas are........well not that great!

The State fair reassured as that we are old and after about 1.5 hours we headed back to the train to take us back to Dallas. We met a sweet but dirty old lady who kept wiggling her eyebrows at me regarding "our anniversary". I couldn't help but giggle at her. Once we got back to our room we talked about where to eat. We had originally thought of an upscale steak dinner, but we settled with the Italian homestyle cooking of the Spaghetti Warehouse. We settled into their bar area to eat, watch the Rangers play, and have some drinks. We were greeted by a very sweet but rather drunk bartender and she was pure entertainment the rest of the night. So the night away was a success, but I did find myself wondering about Jude. I knew he was in safe hands with nurse Allan and our sweet friend Fleck.

When we got home the next morning I had the following conversation.

Me: did you get up a lot?

Fleck: Not to bad only about 4 or 5 times

Me: Oh good

Fleck: but there was one point where I thought the cat had crawled into your blinds. He was up on the dressed banging them as hard as he could when I remembered your blog and that you said he wants out. So I got up and he went out.

Me: Makes you want to hurt him huh?

Fleck: Not sure how you do it everyday I would hurt myself or someone else by now.

So all in all it was a good weekend!

So during therapy yesterday I mentioned I watched Jude in Speech. I also went to watch him in Physical Therapy where they failed to bring the therapy dog. Jude was NOT happy! He was crying so hard that they were trying everything to get him to calm down. So I began to talk to him and every time I would talk he would turn his head towards me and listen. Then he would turn his head back and cry, but he knew my voice. The therapists all commented on how well he responds to me and that made me feel great.



Therapy and mobility

Today on lunch I went up to Jude's therapy center to meet a rep with the mobility company. While waiting on the rep to arrive I got to sit in on Jude's therapy session. They are now using one of the therapy dogs with Jude to get him to stay calm during the Vital Stem. We have animals at home, but I have never really seen Jude respond to our animals the way he does with the therapy dog. The dog really calms Jude and Jude will relax his hands when "Walker" puts his head on Jude's lap. I was really amazed at the effect the dog had on my kiddo.

Soon the rep arrived from Amigo Mobility and we chatted about the issues we are having with Jude's chair. We showed him where the bruising was on Jude's leg and he measured Jude. He then got his tools and worked on Jude's chair for awhile readjusting it. He was very honest with us and explained that Medicaid will not want to get Jude a new chair and is going to fight us the whole way. The fact he has a new diagnosis with the Scoliosis will help because his stroller chair is not good for the Scoliosis. He then pointed out there Jude has no more room to grow in this chair. So his suggestion was to order some additional padding to last him until he outgrows the chair completely and then we will file that the chair is "maxed" out. He is going to order another bath chair regardless of the fact that it's only two years old. He said "when it's maxed it's maxed" We have a three year old that is almost 4 feet so a baby bath chair isn't going to work.

We then discussed lifts for Jude since he is so big. They have portable lift that will take Jude off the bed, off the floor, off anything and carry him to where he needs to go. This will be so much easier on myself and primarily on Charlotte. Last but not least we are getting a portable suction unit to go on Jude's wheelchair in case he throws up at school. He is throw up sessions have been much better lately, but when he starts throwing up it takes awhile for it to stop. Therefore, we have to keep his airways suctioned.

While discussion the lift Charlotte put a thought into my head I didn't have before. Currently Jude uses his exercise mat when he lays on the floor and plays with his toys. She said she worked for another family that had a platform built like the one at our therapy center. This helps the nurse and the family. Seems to me it would also help the child from being on the floor so much. So I did some research online and found this.

It's the exact same height and looks the same as the one in the therapy center. I would just need a thin mattress or a large mat to go on it. It would be odd having a bed in my living rooms, but I give up on trying to have a cute house. It just isn't going to happen anymore. So I am going to talk to Mike about getting something like this for Jude during the day.

I was really aggravated today because I was so pressed for time during Jude's meeting. I had to get back to work but I wanted to concentrate on what Jude needed. I so wish I could magically pay off my house and get a converted mini-van so I could stay home with Jude. I would like to be the one that drives him where he needs to go and be able to attend his appointments. I really do!

Head injury and stars

Well I made a really dumb girl move last night. Ever had one of those? I was getting groceries out of the back of my car and started to close the top when I noticed I left something. I reached back in to get it forgetting I pulled down the top and rammed the top of my head into my car. For a second I thought I may black out. It was bad enough that my husband came running. Emily then got a wet rag with ice because I was positive I had broken my head open. Mike pulled my hair back and said, "You didn't break it open but it is really swelling up". UGH!

I feel terrible today. Coming from someone that has had a severe concussion before that affected my recognition I am pretty sure I gave myself a really mild concussion. My ears are ringing, my eyes are swollen, my head throbs every time I turn my head. Just brilliant I tell you! Right before my big anniversary weekend.

If I could have stayed home in bed I would have. I am sitting at work pretty miserable patting myself on the back for a dumb job well done!

Emily's Smile Boxes - an old post I noticed didn't publish?

On October 7th Emily held her big 13th birthday combined with an Emily's Smile Boxes fundraiser and box party. She and her friends put together 400.........yes 400 boxes for local hospitals. We don't organize Emily's Smile Box events to expect gratitude we just do them to help others cope with situations we have been through. Although, I have to mention that this event generated 3 emails with pictures and thank you's! We were so happy! It's nice to know that the boxes arrived in the places we designated them to be and that her boxes have made an impact. We adore seeing the pictures of the sweet children with their coloring books and more.

The biggest impact we can hope for is a child that recognizes the importance of helping others. Recently Miss Bailee Ray emailed requesting to hold an Emily's Smile Box event in her home town. She worked so hard to raise the money to put together 50 boxes. She was just shy the total amount when a generous donation from Dustin W came in. We offered to pick up the difference and send her the necessary tools to complete her mission. Her mothers' numerous emails describing her daughters joy in helping others symoblized why Emily's Smile Boxes was established. She even wrote that when she asked her daughter who she would like to invite to help make boxes her daughter picked the one girl she knew had some trouble at home. She wanted to include her in a "worthwhile" event she said. So we may not hear from every child that receives a box. In fact the emails may be slim, but the ones we do receive .............. well they will be the kids that will change the world.

Watch out America. Emily's Smile Boxes and her friends are making bringing the positive to override the negative in the world! I predict lots of Smiles in our nations future!

For further smiles and positive impacts please visit the website for Rachels Challenge. You never know when you may be the "link" to spreading a positive message. http://www.rachelschallenge.org/

funny and fittings

Yesterday was mine and Mike's anniversary. We plan on celebrating this weekend. Our amazing friend Fleck is going to watch the kids at night when the nurse leaves. We are going to go to the fair and then have a nice dinner out together.

Last night Jude thought his sisters mustache was hilarious...

Just kidding, but she does look funny! I was actually telling Jude how cute he looks in his Polar Bear jammies I got him and he thought it was so funny.

So Jude's teacher wants to take him to aquatic therapy which I am THRILLED about. She thinks he will do very well in the water and I always thought he would too!

Oh and to follow up from my prior blog.......we got denied on diapers.........again. sigh! Oh well. Costco diapers are great.

So we meet Monday with Amigo Mobility at Jude's physical therapists office. They are working on the fitting for Jude's wheelchair. We are also going to talk to to the company about a lift. Jude is getting to heavy for Charlotte and myself to lift. Mike mentioned that sometimes we feel truly uneducated when it comes to therapy equipment for Jude. We feel like he may be lacking for items that would further improve his life because we don't know what to provide him. We research and we listen to his nurse, teachers, etc. I guess I sometimes wish there was a manual about how to care for special needs. Anyone else ever feel this way?

How I feel

“Ignorance and inconsideration are the two great causes of the ruin of mankind”

That about sums up how I feel with some people lately. Just bleh!

I don't feel like talking about it. I am just going to be grumpy for awhile until it wears off.

It never gets old :)

A trip away and a thank you!

I felt compelled to write this blog after communication I received regarding my post about going to New York. I think the best comment I received was from Charlie's mom who understood what it's like to struggle with a situation very different from other families you know. Charlie's family struggles with the same situation we do. Do we take Jude with us.......knowing he will be miserable, stay home and not get away, or leave him behind and feel guilty. Sometimes it's a no win situation, but getting away and recharging your battery can sometimes be a great thing.

I also felt compelled to write based on my own hold ups. I am a busy person. I work full time, I run my daughter's charity, and I run a natural pageant system. The pageant system is my pride and I work very hard at it because someday I believe it will be a great success. To accomplish this success I feel the need to travel a few times a year with Emily. This normally requires two days on the weekend. I sat down and started to think about our time away from Jude or home. 3*2 = 6. Mike and I went to Hawaii for 5 days and if we travel to New York it will be 3 days. That's a total of 14 days. Let's add four days to that just to add in time away for parties, airport delay's, etc.

That's 18 days. After listening to my fellow need special needs moms respond privately to my blog I wanted to voice something. Bash me if you want. 18 days.........put that in perspective. God knows I love my children with ALL my heart. Every night for 365 days (well minus the 18) a year we draw Jude's medications, we change his diapers, we accept he won't be potty trained, we hook up his IV feed, we sedate him, we give breathing treatments, and we wake up...........no less than 4-5 times a night. I see people complain about less on facebook. We get up at a MINIMUM 4-5 times a night. We love our son more than life itself so we leap out of bed to reposition him.

The point is that if a special needs mom bestows the blessing on you to ask you to watch her child while she sleeps at night or recharges her batteries than please be like my family. Offer to sit the child without resistance and never wonder who will be there with you. Never wonder if a nurse will be beside you...simply learn how to take care of the child. You offering the help is the best gift anyone could ever give. A recharged battery always supplies a better flow of energy to the receiving party. We all understand that we accepted this life and our little ones have blessed us so much, but having someone to help is priceless.

We are lucky to have amazing people in our lives to step forward and help us with our jobs, my children, and our lives in general. We are also blessed to have two amazing kids. Thanks to those who help us out without question or judgement. A prayer to those that do not have the help I do because I am blessed.

HOORAY Jude!

Tonight I was holding Jude and he seemed to get a bit tired of momma smothering him and wanted down on his mat. Soon he was saying, "uhhhhhhhhh". He grew louder and louder and Mike and I smiled at his communication abilities. I said, "He wants up!" Mike asked, "Jude do you want up?". Jude replied very clearly, "Uhhhhhhhhhhhhhhhhhhhhup!". We were both SO tickled. When Mike lifted Jude into his arms Jude had the biggest smile I have ever seen. Jude was so very proud of himself. He kept smiling and cooing with great exaggeration.

Jude then wanted back down again. I placed him on his tummy and Jude began moving all around his mat. His lifted his bottom, he moved his legs, he used his arms like a swimmer, and he wanted to "go go go". He even used his leg in a swimming motion for the first time.

He is making such progress and such a little fighter! We are so proud.

I also had a comment on my slide show tonight about how Jude's baby pictures look so "normal". Yes they do. Make no doubt that Jude's life is laced with a lot of medication, G button feeds, and sedation. Although, he is dearly loved. He cannot walk, he has trouble seeing, but he is starting to communicate. He is rebelling against what the doctors said. I hope he rebels for a really long time!

A scare and NYC

I had a bit of a scare today regarding Emily's Smile Boxes and Emily being in the public eye. It may very well be nothing but a bunch of kids, but nevertheless I was a bit creeped out.  Although, I believe it was just that...a "scare". We monitor Emily's charity like hawks and all emails that come through the website and the primary email go through ME first. Emily handles making the boxes, appearances, etc, but be assured that I handle every aspect of the rest of the company. I am a smart woman and I have known from the beginning of Emily's venture that I would need to watch her closely. She is tightly protected so in case you are wondering.......mama doesn't play nice when it comes to her baby chickees!

Anyway, I think I mentioned that I have three nights at a Marriott hotel. I suggested that we go to San Antonio for Thanksgiving and take Jude to Morgans Wonderland. I wanted to see Emily's path light for her award and let Jude for on an accessible merry-go-round. Mike reminded me that he would be at the Cowboys Game on Thanksgiving.......darnit! So he looked at me and said "How about New York?" I was a bit surprised he suggested it and replied "what about Jude?". He suddenly seemed sad both that Jude could not go and we could not go. We had talked before hiring a good friend that has training with caring for someone with needs to sit Jude if we needed her to. So I suggested "Let's use the respite and hire her". I explained to him in a calm manner that it's okay to want to go somewhere. Truly it's okay to want for things.  Every day couples take vacations with and without their children. We could always take Jude to Morgans wonderland in the Spring when it will be a bit warmer. Mike seemed interested and started talking about how amazing it would be to show Emily New York City. We fly for free so we could go for the weekend and only have to pay for meals. We are still considering it, but the thought is there. Are we sad that Jude wouldn't go with us? Of course. Do we know he would be in good hands .... yes. Do I think it's important to take these mini excursions throughout the year.....MOST definatley.

So Jude slept pretty well last night which is a great thing. Emily has a sinus infection today and isn't feeling well. We are hoping for a relaxful healthy weekend.

A progress report

Jude came home with a "progess" folder from school yesterday. His folder contained his very first progress report. It explained which goals he had met and which ones he had not. It was encouraging to see Jude has began to meet some goals and discouraging to see he received a 0 out of 5 regarding reaching and grasping. Inside his folder he also had a "school picture day" form. I smiled because we never thought of Jude paritipcating in school pictures. I am not sure why I didn't think he would be included......he should be. I don't buy Emily's school pictures because she receives so many through Mike and Tiarra. Although, I decided Jude should have his. So I filled out the little form and slipped my check in the order form. I then placed the envelope back into his folder for Charlotte and shed a little tear.  

Emmy Roo!

Happy Birthday to my beautiful Emily. I am so proud to be your mom! You are more than I could have ever hoped for in a daughter. Thank you for all your help with Jude, for your warm smiles, and for just being you!!

Jude's dr visit

Jude had a neuro visit today. The doctor said he thought Jude looked very well and said he thinks his seizure activity has decreased. He did give Jude a prescription for Valium in case he has another episode where he is rigid and arching. He believes this is attributed to the Schizencephaly and that there is little we can do about it. Although, he wants us to avoid another ER trip is possible.

So I mentioned yesterday that Emily's birthday was a success. You can see the news piece they did on her at this link.
http://www.wfaa.com/news/local/13-year-old-would-rather-give-than-receive-on-her-birthday-131373953.html

Last night I gave Jude 3/4 of his sedative vs 1/2 to see if it would help him sleep better and it did. He woke up once about 1:30. Problem is I guess he slept SO well and soundly that he was bright eyed and laughing up a storm in his bed at 5am. Man, I just can't win...lol!

Whew I am pooped!

Emily's party was a huge success and I will post more pictures soon. I am worn out though. The party was a lot of work and Jude was up a lot last night. So until I post more here is a cute picture to enjoy.

Jude is feeling better

As you can see Jude is feeling better. He found his giggle box again. He even enjoyed our walk last night.

A little off and a view of fate

Jude is just not himself. I am not really sure what is going on. It may be his teeth or it may not, it's always a guessing game. He got upset on our walk again last night and he continued to wake up from 2am on this morning. Honestly.......we are all really tired again. Mike suggested that we might try increasing the sedative to 3/4 a table vs 1/2. He was originally prescribed a full tablet, but it was to much for him at the time. He also isn't smiling as much as he normally does. He still smiles and giggles, but he just seems a bit off. Mike and I plan on sleeping late on Saturday when the nurse is there to watch Jude. We are keeping a close eye on the little boy to see if there are any signs of anything going on. Jude is truly enjoying school! He went to recess for the first time yesterday and got to ride the swing. The teacher said he loved it!

So this morning on the radio I was listening to an interview with Seth Macfarlane the creator of Family Guy. He is a truly interesting person seeing how he writes, acts, sings, and more. He also had a fascinating story with a fascinating response. On September 11, 2011 he was booked on flight 11 which was the first plane to hit the north tower. Due to a hangover and an incorrect time written down by his travel agent he missed the flight by 15 minutes. When the radio personality asked him if he has pursued a more meaningful life since being spared by fate he had an interesting reply. He said that he believes we put to much significance upon life situations that just revolve around coincidence. Who is to know he might have been hit on the street this morning if he had stepped out a few minutes later. I was fascinated by this because it was a different way of thinking than what I am used to. I truly believe in fate. Maybe he had more to do here? Maybe he wasn't intended to be a martyr on the planes? Who knows, but it was an interesting thought process. Everyone is so different.

So I tried to highlight my hair last night since I am running a bit low on funds and we are out of credit at the salong. It didn't go that well which is surprising because I have done this with ease in the past. I am pretty brassy and funny spotted! Oh well, I guess it makes for interesting conversation.