Friday, October 29, 2010

XXL?? You must be joking...

So Jude's weekend nurse Allen has graciously offered to work from 1pm-11pm on Saturday so we can go to a costume party. I am very excited, but I think Mike feels I am dragging him out by his shirt collar. It will be good for us to get out, and go see some people we haven't seen in a long time. So I wasn't going to dress up, but I found a hilarious outfit.......well funny to me, and I had to get it. I was waiting closer to payday to go back to the store, and pick up the items I needed. So today I darted to the mall on lunch to make my purchase. I was very excited, and quickly walked in the store, and walked straight where I had seen my desired outfit. To my dismay I saw a tag that read XXL, and my heart sank! It was the ONLY one left, and I needed a medium......XXL wasn't even close.  I looked at the actual shirt, and realized that it looked really small to carry that large label.  
My conversation with the salesperson went something like this.

Me: THIS is an XXL?
Salesperson: You should have seen the XS!!
Me: I cannot imagine, what the heck did it fit?
Salesperson: A newborn

I cracked up! He then explained the costumes run very very small. So I grabbed my item, decided to wash it tonight to shrink it a bit, and headed out the door. I will post pictures from Saturday, some of you will "get" the costume, and some won't. I will have to count how many people guess it :)

Jude did very well yesterday. Charlotte said she took him on a walk. I forgot to tell her that every time the wind hits Jude's face he will laugh. She said he laughed the entire time they were walking. I miss hearing him giggle during the day. He is still having lots of spasms, but overall Jude looks good. That's a reassuring thing to say..........Jude looks good. whew! I hope we are able to keep saying that.

Mike may have gotten a lead on a job. His friend works for the Dallas Cowboys in their warehouse and shipping department. He let Mike know they are hiring for some position. His friend had a very nice job there, and Mike would probably just be at an entry level position. It's not what he wants, and he is overqualified for it, but I assured him it would give him the chance to work his way up. I am hoping something comes of this.

Thursday, October 28, 2010

Halloween, our nurse, and sleep

Halloween........it's a pretty big deal around our house. I love Halloween, and I love Christmas! We go all out for both. As I said yesterday we are planning a haunted cemetery at our house, and are accepting donations for Emily's Smile Boxes. Well for treats I ordered 150 awesome large swirl lollipops. I then ordered custom round stickers for the back that give Emily's website address, and say "spread a smile!". Well I had no idea the stickers were CLEAR, which doesn't work on the back of a swirl sucker. So Jude's awesome nurse sat there one day cutting our little squares of white paper to put under the stickers. She did all 150 suckers! So here is a peak at all the suckers, and goodies ready to go.






We are pretty lucky that we have found a great nurse that is so good with Jude. We actually have two great nurses that come into our house. We are beginning to feel more comfortable again, and like we aren't alone in this. We have people with experience that are so helpful, and we know Jude is loved by them.

Jude's button still has some granulation around it, but overall he is doing much better. He only woke up once last night, and then again about 6:30am. I felt a little more rested today. Honestly, for a few days there I thought I was going to pull a Lohan and just fall out on the floor. Anyway, I am happy for some sleep. Like I said we feel more comfortable.......more "normal" per say. I think Mike and I are both hesitant to feel that way because we wait for the "other shoe to drop", but for once I am going to breathe a little easier.

Emily's charity is still charging ahead full steam. We now have two schools who have adopted Emily's Smile Boxes as their student councils charity. One is the school Emily attends who is doing several activities, and then the other is a local high school. They are holding a car wash, a chick fil a night, and selling t shirts. We are very lucky to have such great supporters. I feel confident we will be able to fill the 400 boxes we were wanting to for Christmas.

Wednesday, October 27, 2010

a quick update

Jude had therapy again today, and Miss Jennifer is getting used to this look..........



She thinks it's cute that he is showing eye contact, even if it is his "angry" eyes. Jude has had a lot of spasms today, several at therapy. We are attributing this to his teething again, but I am anxious to get them under control. Also, Jude seems to have suddenly grown. I swear he looked so much bigger when I got home from work yesterday.

I am busy getting ready for our haunted cemetery fundraiser this weekend. We always go all out of Halloween for the kiddo's, and this year we are accepting donations for Emily's Smile Boxes. I really hope we have a great turn out. Last year we had 117 kids show up!!

Tuesday, October 26, 2010

Just here

I received an email from an old friend a few weeks ago, one I haven't been able to share until now. She emailed me and expressed that she knew how hard our life was, but in turn told us how lucky we are. She is single, she is suffering from a recent diagnosis of a major neurological disorder, and she has no children. She said I was "lucky".........what an amazing adjective. I was lucky because I was someones mother, and I could make the difference in someones life regardless of his future outcome. I always say I am lucky, and I believe that, but for someone else to want to step into my spot is amazing. She is afraid she won't get the chance to be someones mom.

So if I were to write my blog today it would be almost word for word of what my friend over at http://reaganleigh.blogspot.com/ wrote. Jude went to bed just fine, but after 1am he was again a wiggle worm all over his bed, moaning, and just not comfortable. He only truly woke up once, the rest of the time he just moaned, and fidgeted. I was in his room countless times trying to reposition him before he did wake up wailing. If he wakes up hysterical there is no calming him back down for awhile. Finally about 7am he couldn't take it anymore. He screamed, and screamed, and screamed. He sounded like he was hurting so badly, and we couldn't figure out what was wrong. He was in a full on tantrum. We vented him, we gave him Motrin for his teeth, we did everything.........until Mike got irritated. He took Jude put him in the living room on his tummy, and walked back in our room.....and then......silence. I walked in there to find him on his blankie, biting his hand again. He wants to be on his tummy ALL THE TIME. We do not let Jude sleep on his stomach for obvious reasons, but if he could I swear he might sleep all night. Today I had had it! I said "I just cannot do this anymore" and I meant it. Of course I didn't mean Jude, but getting up through the night. I am DEAD honest when I say I need either a day off when the nurse is there so I can sleep all day, or check into a hotel to sleep all night. I think I just need one night of uninterrupted sleep. I am sure a lot of moms and special needs moms understand this. Imagine when you had a newborn.......now imagine that never easing up. I am mixing up my words when I speak, my emails have words mixed up or misspelled, and it's really starting to mess with my pysche. Oh, and the button got clogged again last night, so I held Jude down while Mike removed it, and cleaned it.

Poor Emily is having a hard time in math. Math was always her favorite subject, but this year it is burning her out. I have been taking her to tutorials every morning, but I am beginning to rethink this pre-ap math idea. She is making an A+ in pre ap Science, but math is just proving to be difficult for her. I understand this. I was getting on to her yesterday about grade, and the girl got sassy with me. I pulled the angry mom eyes out, and I think her friend Madison was searching for an escape door out of my house. After she and I both calmed down we went to the store to buy her a new binder to better organize all her subjects. I helped her label every divider, and I think she felt much better.

There is a car wash this weekend in Keller to benefit Emily's Smile Boxes. If you would like more information please email me direct.

I will leave you with some photo's.

I think I can crawl
 I know I can
 I am going to keep trying!





Monday, October 25, 2010

The weekend update

Friday night Emily had her very first dance at her school. She was so excited! It's hard to think back to my middle school years when everything was so new, and thrilling. I like watching her experience happy moments for the first time. It was a costume party so she, and her friends dressed up. Emily was Alice in wonderland. Her friend Maddie was the red queen, and Addison had claimed the Cheshire cat. Well it seems Addie didn't care for the cat when she saw the costume, so we had two red queens. When we originally drove up to the school they didn't see anyone else in costume, and they began to panic. I talked to them about being self confident, and walking in like you own the place. My speech didn't go over well, but luckily they saw someone else in costume. So here are some pictures.




Saturday we had been planning Emily's birthday shopping day. She had asked for money from the family for her birthday so she could buy clothes for school. So planned the dinner at the restaurant the day of her birthday, and then a shopping day Saturday. I was exhausted, but I strapped on my big girl boots, and out we went. We grabbed Emily's cousin Faith (they call each other fuzzins .... friends and cousins) and we met up with Auntie Fleck at a wonderful restaurant for brunch. Then out we went to watch Emily shop. We had a nice time!!

Sunday we had lifetime movie day! Emily, and I were suppose to go to an Emily's Smile Boxes event. Let me explain, our friends scheduled a birthday party for their little girls with an Emily's Smile Boxes theme. The moms had bought enough supplies to make 36 boxes at the party. They also requested that rather than gifts to bring a donation for Em's charity, and they set donation boxes up. The party raised more than $400, and they dropped all the made boxes at Medical City Dallas Children's tower. I thought it was a splendid idea, and I hope more parents will look into this. Teaching to give back at an early age instills compassion in our children. So the moms had heard I have not been getting much sleep lately, and they emailed me to inform me they had yesterday handled. They told me to take the day off, and I did! It was awesome. The only thing I did in regards to work was clean my bathrooms. Mike went to work so I took care of Jude all day including the pump. He did very well for me, and we snuggled a lot. When Jude would get fussy I would put him on his tummy, and he would do much better.

Jude was up and down again last night, but I think I am used to it. Plus he is to cute to be upset with.

Sunday, October 24, 2010

In my Pj's!

I am doing nothing today, and it's nice. I cleaned up my bathrooms, but besides that I have been on the couch relaxing. I needed it. Emily, and I are both still in our pajamas. Jude has been doing well today. He wants me to hold him the hold time, but I don't mind. He was up, and down again last night, but since I didn't have to rush to work it didn't add to my exhaustion. I have noticed more build up around Jude's button today. I have just been cleaning it off, and I will let the nurse know tomorrow.

Today I was suppose to go to a birthday party for some special little girls. They decided to have an Emily's Smile Boxes birthday party. Instead of receiving gifts they asked everyone to bring a donation for Emily's charity. They also asked me to order supplies so they could put together Smile Boxes at the party. The mom sent us enough funds for 36 boxes. We got all the supplies together, labels, boxes, and more. They swung by the house last night, and picked everything up. The parents were so nice, and told us to stay home, and relax today. They took care of everything, and are even dropping the boxes at Medical City later today. What a nice wonderful group of people! I really liked this idea, and I encourage more people to do this with their children.

I am keeping it short today, I just wanted to post a quick update.


Friday, October 22, 2010

"I hate you", and a button blow out

I had a really good day yesterday, but last night was terrible! When you are on the phone all day for a living you really want some peace when you get home. My family was very talkative, especially my husband. It wasn't even really talk, it was just squealing, play wrestling, and noise. They were just having fun, but I finally just lost it, and then I felt terrible. I just wanted to watch Oprah for a few minutes without any noise.

After that semi melt down I had another one. Emily was behind on homework, and it was taking her forever to complete. She had been at play rehearsals, and then her friend came over to ask homework questions from across the street. That turned into them talking about other issues, which delayed her homework even further. It was not late, and I was now aggravated. Our conversation went something like this.

Me: I am thinking that after this play you need to take a break from plays for awhile
Em: (highly upset) BUT WHY??????
Me: because it's taken over your life. I know you want to do this Em, and it's important to you, but you are having a hard time balancing everything. You don't even have time to help with anything around the house anymore. Your laundry is stacked up, and more
Em: I do help, I cleaned my room
Me: Um Fleck cleaned your room, with you helping
Em: well I did the dishes
Me: You did them ONCE, and that leads to my next thing. I need some help around here, because I am the one picking up your slack. Your one chore while you are in the play will be to do the dishes when you get home. Just unload the dishwasher, and load it.

You would have thought that I told her she was just going to prison for thirty years. I mean fall down crying hissy fit. That led to the next words out of her mouth which left me stunned.

Em: and just what are you going to do
Me: (blinking in shock)
Em: looking at me like ....... holy crap I said the wrong thing
Me: Are you kidding me? I work all day to come home, and work again. I cook, I clean, I do laundry, I work your smile boxes, I make sure you have your stuff together, I tend to Jude, and you my dear are grounded for two weeks, and you may not even go to your first dance tomorrow.
(I was still planning on letting her go to the dance I was making a point, but then she got even more sassy)
Em: (rudely): You mean you would keep me from my first dance
Me: With an attitude like that, you betcha!
Em: I HATE YOU! (score I got my first I hate you........sigh)
Me: Emily I will tell you this ONCE, and only once, I said that to my mother, and the next day she died......and that's a true story.
Emily looked a bit guilty.

Emily then stormed off as the words from Eddie Murphy's comedy rang in my ears about his mother throwing tonka trucks! Later in the evening I decided to give Emily a big girl decision. I walked upstairs, and told her she could either be grounded for two weeks which means no phone, no texting, no going outside, and no computer, or she could opt not to go to the dance. She thought about it for awhile, and opted the two weeks. We already have plans for Saturday that we are committed to, but besides that miss priss is grounded. I love my daughter, and she is a good person, but boy she tried my patience last night.

So let's move on to Jude. Oh poor Jude, sigh. I was so irritated and had my feathers fluffed up, that Jude in turn got upset. He had been so good, and sweet in my arms, but the stress just got to him. So he started crying, and ended up falling asleep from being so upset. I then took him to his bed, and lifted him up over the railing. Suddenly he woke up crying, and I realized I had his tube from his button caught on the crib, OH MY. I felt so terrible. I laid him down, and I heard PFFFT and it blew out of his stomach. I yelled for Mike who came running in, and was in pure panic mode. Emily followed him, and they quickly got everything together. He sterlized the button, and with shaking hands he put it back in. It all worked out, but I cried, and cried, and cried feeling like a horrible mother.

I finally went to bed, but was pretty much up from a little after one. Jude was up, or the cat was up, or I was up.  I am exhausted! I am so tired I feel like I cannot function. I have gotten used to going without any sleep, but this is one of those days I might have to just give up. I might have to request to leave to go home to sleep. I can feel myself getting sick because my body needs sleep.

Thursday, October 21, 2010

The itsy bitsy spider.....

Can't fit up the water spout! EEEEK! I am not a fan of spiders, but they don't really bother me like scorpions do. I tend to believe they are here to eat mosquito's, and other harmful bugs. This coming from a person that was bit by a black widow, and sick for weeks! Anyway, so after our anniversary Mike and I came home to a nice size spider scurrying out from under his truck. I said "WHOA that's a tarantula" before I realized it was a wolf spider. So we went into the house, and I told Charlotte all about the big spider, and Mike, being a man, down played the spiders actual size. Charlotte left telling me she would look for my big spider, and laughed. Today she came inside and said

Charlotte: "Um your friend is back in the driveway"
Me: " My friend"
Charlotte: "The tarantula"
Me: "Ohhhhhhhh, he is a BIG spider isn't he?"
Charlotte: "Um yeah, I am taking a picture"
Me: "Me too so I can show Mike!"

So here is my creepy crawly resident:

Remember I am standing over him, and away.......that's how big this sucker was, shooo!!!

Jude was up and down from 3:30am. I am pretty beat today, but I am at work hunting life sales, and servicing policies.

Wednesday, October 20, 2010

The dinner, and more

It's been a very busy week at work, sorry for the delay in posting today.


Our anniversary dinner was wonderful, and the food was scrumptious. It was strange being away from the house at night with Mike without a lot of worries. We knew Charlotte was back at the house taking great care of Jude. We are very thankful she has come into our lives. So at the end of our meal we ordered desert. I never get desert, but love it, so we splurged. We ordered the desert "sampler" thinking it would be four small samples of some yummy items they offer. Oh but no, this was four full size deserts staring at us on a beautiful plate with the words "happy anniversary". I took a bite of the bread pudding, then a bit of the chocolate torte, then a bite of the cream brulee, and then settled on the black raspberry chocolate truffle ice cream. The ice cream was WONDERFUL! So I ate about half my bowl of ice cream....and my hubby.....at EVERYTHING ELSE! Plus, the rest of my ice cream. I could hear the waitress laughing as I said "you are going to be sick, and we better not go home with you whining and moaning" Below is a picture of our oh so beautifully created plate, and then my husbands spoon in the way before I could finish snapping my pictures.







I really appreciate all the nice comments, emails, and posts on here and facebook yesterday. I even received some cards from our nurse, therapists, and others....so thoughtful! I have such amazing friends that truly understand how difficult these past two years have been. A tragic situation can shed new low statistics on a marriage making it. I am determined Mike, and I will beat the odds.
When we went home Jude was alright. He seems a bit distant since his button came out. I think it's his teething again because as I had stated his seizures have greatly increased. He also is very lethargic. He isn't running a fever so we are not worried about infection. So I flipped him over on his tummy while I ran to put a load of laundry in. I came back to him trying to crawl again, and then he quickly fell fast asleep on his stomach. Jude was sporting his Morgans Wonderland T shirt that they sent to him with Emily's award. I think it's so cute!






Today Jude started back to therapy. It was his first session since his surgery, and he was cracking me up. His therapist said she noticed a lot more eye contact from him, and I have noticed that as well. The reason he made me laugh is because he kept staring at the little vibrating wand she uses to stimulate his mouth reflexes, like "just exactly what do you think you are doing with that thing". I actually caught him looking at her in that manner on film.


The eye contact is good, but the fact Jude won't touch objects is a bit sad. They worked, and worked with him today to reach, touch, or anything, but he just doesn't have that function yet. They sent us home with some very loud switch plate toys, and we are going to work with him everyday on them. They also have an IPAD coming into the facility, and said they would try to work with Jude on it. They are researching the best programs for IPAD, and will let me know more later. I am also going to make some large picture signs of our faces, and label them mom, dad, and sissy so he will learn the words.

That's all for now! I am craving some lemon drops...I may have to run to the store by my office. Those are low calorie, right?

Tuesday, October 19, 2010

Happy Anniversary Mike!

So in 2006 I met my future husband Mike, and we married on October 19, 2007.




 
I planned every part of our wedding, down to the very last  pink rose petal that dropped on the white floor that led to the gazebo we married under. Although, I didn't plan for the beautiful monarch that landed in my bouquet, and stayed there until the end of the outside ceremony, but let's just call that an added bonus (look in the upper left of my flowers). Maybe the butterfly was my mother enjoying the wedding, or maybe it was a sign of things to come.







The night was amazing. It was filled with love between Mike, and myself, and love coming from our friends and family. It also came with one heckalacious hangover on our way to Mexico thanks to the ever flowing river of Champagne the night before.  Somehow it seemed my glass was always being refilled.  Nevertheless we had an amazing time filled with the most lovely memories.

Mike made me feel safe, he made me feel ........beautiful. When we got married I knew we would have children, and probably pretty quickly. His parents are in their late seventies, and he had already expressed he wanted his mother to see her grandchild.  We originally talked about having two kids, and I had such expectations. When I found out I was pregnant we were both thrilled, and soon after arrived.........our little Jude. When we were told at 19 weeks that Jude may have suffered a "remote bleed", we never put together what those words truly meant. We had no idea what that diagnosis meant for Jude, or our marriage. When we were told there was a "chance" our child could have special needs..........we had no idea what that truly meant. All we thought of was the son we already loved so very much.


This past weekend I was at a function where I had an elderly lady come up to me, and she approached me with an interesting question. She had heard our story, and she grabbed me tightly around the waist... which freaked me out a bit. I am a "keep out of my bubble" type of person. Although she intrigued me so I listened. She said, "I am sorry to hear about your son". For the first time I heard myself instantly responded, "why?". She paused..........and she looked at me, and she said "how would you describe your sons suffering in a way others not going through this would understand". I paused for a bit to gather my thoughts, and I searched my brain for the proper answer. A picture I had snapped while laying in my bed of Jude's crib came to my mind.  "That while dreaming of the child we were going to have I never expected to see an IV pole above his crib every night..........and that he doesn't deserve that." I felt like I was watching the Karate Kid, she shook her head yes, and patted my arm in a positive manner. "Exactly, and that's why I am sorry". She started to walk away, but I grabbed her arm in a tender manner. " but .........  even with his IV pole he has helped more people, and spread more understanding about life in general than any of us EVER will". She grabbed my hand, and she said "I know". I found out later that she ............. had a child with special needs ;). She got it.


So last night Mike looked at me and was telling me how much he loved me, and how happy he was our anniversary was going to be today. He said "In our world it always rains, it's just a matter of finding the best umbrella, and making it work, and I think we have done that". That's why I love him. I know my close family and friends have been so aggravated at Mike this past year for yelling, and being so easily upset. Goodness knows I have too, but during this year I have reminded myself that this man deals with more than most people would ever think about handling. He is my right hand, he is my love. He is my pain in my patootey some times, but he gets it. A lot of men cannot fathom the idea of being a stay at home dad, and I even know a few that have tried and said "forget it!".  Mike not only has stayed home, but he has cleaned up vomit more times than anyone can imagine. Think of feeding a child that barely gets enough nutrients only to have them throw up all over you, the floor, their sheets, and more three to four times a day. This after you have sat trying to feed him with a bottle for hours. Mike made sure all Jude's medications were delivered everyday on an exact schedule. He would get Jude to therapy, to the doctor, to the ER if needed, and handle more seizures than one person should. In the hospital he has slept on two chairs pushed together with his large 6'1 frame. He has eaten countless trays of hospital food, and gone sleepless as much as I have.   He has held Jude down for countless blood draws, and IV lines. He has calculated food amounts in Jude's feeding tube, and done more medical research than many nurses. After a week of keeping a baby all day long he would keep him again on the weekend while I sold Scentsy, or marketed Em's Smile Box campaign. Mike says I am a shark, and that if I quit swimming....I will die. He is probably right, so he just supports me the best he can. Every night when he comes to bed Mike snuggles next to me, regardless of what time it is, and says he loves me. He tells me I am beautiful on a frequent basis, and how lucky he is to have me. Yeah, remember that buddy, haha. Anyway, tonight he made plans for us, which impressed me. He worked for his friend to get some gift certificates for dinner to a place in Roanoke I have wanted to try, and he even arranged for our nurse to stay late to watch Jude. It was such a nice gesture.


I have faith we will make it through this long hard road ahead of us with Jude's tiny hand, and Emily's too. Thanks Mike for being my husband. I love you "to" much. Happy Anniversary!


Monday, October 18, 2010

A needle in a haystack....

I have a lot to update, but it's been so busy it will probably take me awhile to finish this blog. Friday night I went home to get Emily, and her best friend Madison to their homecoming game. The posed for some pictures on the way out the door.


They had a good time, and Mike was nice enough to go pick them up from the game. Friday night my friend Fleck also stayed the night because we were going to have a garage sale the next morning. I was looking forward to a horror movie girls night in, but Fleck tackled cleaning Emily's room instead. Boy, was she in for a surprise. I kept telling her how messy my kids is! She learned this first hand, and I hope Emily respects what she did, and keeps her room tidy!


Saturday we sat in the sun, and sold what we could to passing strangers. I had a ton of clothes, and other items spread across many tables lining my driveway.  The nurse was inside with Jude, and he seemed to be okay. Judes seizures had greatly increase, and he seemed a little "out of it" to me. I would come in and out of the house checking on him. The nurse "Allen" was very nice, and would sing to Jude, and talk to him in the nicest voice. We have Charlotte during the weekdays, but Allen on Saturdays. Allen, and Charlotte are very similar, both very kind spoken, and just adore Jude.


On Sunday I had the scentsy party I mentioned, and then I had to go get Emily from her dad, and take her to get her Halloween costume. She has her very first dance at her school on Friday, and they have to wear their costumes. Emily picked a cute Alice in Wonderland outfit, which looks adorable on her. So to say the least, it was a busy weekend. On Sunday we noticed that Jude's seizures had increased yet again. We also noticed granulation tissue around his g - button, sigh! ( http://en.wikipedia.org/wiki/Granulation_tissue) We waited until this morning to ask Charlotte about the granulation. She called the GI doctor to order some silver nitrate, and other special cleaning products for his button. He was healing perfectly, so I really believe the granulation is due to the button coming out. The doctor said he would put in the mini 1 if the mic key become a problem for us. He did not have the mini 1 on hand for the surgery. So we are going to watch the granulation carefully. Jude did have issues sleeping last night, he wouldn't totally wake up, but he tossed and turned all night long.We have been working more with Jude's head, but learned we cannot leave him in a chair or stander without support. He begins to choke, and that could lead to aspiration. He chokes pretty violently too.


So last night on my way downstairs my eye caught a small cylinder tube laying next to the railing on my stairs. I squinted to see if it was indeed what I thought it was..........yep it was...........

A NEEDLE!, A 14 gage needle to be exact. I about had a heart attack. What on EARTH was this doing on my floor??? Keep in mind it was late, I was exhausted, and my mind immediately went into panic mode. My mind began to recreate all these horrible scenarios. One being a new nurse (we had several coming in and out right after the surgery other than our regulars) sick of my son administering something they shouldn't. I began to sob telling Mike I didn't ever want to leave my kids again. Finally I remembered that our regular nurse had gotten into a box of medical supplies that our friend Anna gave to us after her daughter passed away.  It was in the top of Jude's closet which is next to the stairs. She was getting some bed covers because Jude kept wetting through his diaper. We assumed the needle probably fell out of there. The only other logical assumption would be it fell out of Smile Box donations, and I don't want to even think that. Regardless it made me feel very oogey!

When I picked up Emily from her dad on Sunday she was loaded with birthday gifts from his side of the family. She also came home with a singing birthday card from him personally. She decided to make her own lip synching video, which is hilarious. It just so happened to be my friend Fleck's birthday today so I left this video on her facebook, it's classic! It's a little mouse on the card singing this little tune.

video

She is such a ham!

Sunday, October 17, 2010

A quick little update

Jude has had a pretty good weekend. He was up and down a lot last night, so Mike and I are pretty tired this morning, but we will hopefully catch up on sleep tonight. Jude did seem a bit out of it yesterday, and today he is sleeping a lot. I am hoping he is just having a growth spurt.

I have a Scentsy party later today, so I will be going to that, and Mike is watching Jude. Mike seems to be doing so much better since the nurse has been here. He has been working near our house doing contract work on a house. I think being able to get out has really helped him.

I am just laying around right now until I have to go to my part time job.

Friday, October 15, 2010

What a night

I actually really enjoyed my night with Jude last night. He was SO smiley for me, and only wanted mommy to hold him. This proved to be an issue when I was pricing additional garage sale stuff, but when I came back to get him he was so excited. We sat and watched TV for awhile until it was time for Jude to have his medications. The first medications went in fine, but then the melatonin wouldn't budge. We took the melatonin out, and flushed the line with water, but nothing. The pressure in the tube was horrible, and Jude was screaming, we were at a loss. We took the line out of the actual button, flushed it well, and then tried again......nothing. We can pumping the line up and down to try to release the clog......nothing. By the time Jude had calmed down, and gone to sleep so I knew he wasn't in pain. I figured if it was an emergency he would still be screaming. So I hopped on Facebook to ask for help, and Mike started reading the g button directions. I also put a call into the doctor. The doctor said the same thing my friend on Facebook said, try a little diet coke in the button to dissolve the clog.......really? So we tried that.......nothing. We tried everything.

So we decided jointly that Jude would go without a feed last night, and Mike would let the nurse try to solve the issue in the morning. If she couldn't handle it they would go to the ER. Jude was already asleep, and we didn't want to spend another night in the ER with all of us sleepless and sick. This morning Charlotte showed up, and she said she didn't feel comfortable removing the button without a replacement. The replacements were suppose to come today. So Mike put a call into the supply company.......and..........right then the whole button popped out! Thank goodness the nurse was there. I know this is something we will have to get used to, but putting that back in ourselves last night would have been frightening. The nurse was able to get everything back in, and even though Jude is livid right now, he will be better soon. So we are all tired again today, but at least we avoided the ER.

Poor Emily is tired too. She missed school on Wednesday because she wasn't feeling well. She came home with a lot more homework than she normally does, and was up until midnight finishing it all. Normally they limit the amount of homework she has. She looked very tired today. She still sported her mum, but I know she is dragging. She is suppose to have play rehearsals again tonight. She already went twice this week, and homecoming is tonight so I gave her permission to skip the rehearsals tonight. Maybe not the best choice, but a kid can only have so much on their plate.




Thursday, October 14, 2010

Middle school Mums

So Emily came home the other night letting me know that their homecoming is this Friday. All the middle schoolers go to the Friday night high school football games. I am sure this is more for social reasons than the game itself. Anyway, she proceeded to tell me she wanted a mum. I explained that when you have a date when you get older then you get a mum. Boy, was I wrong, and man how things have changed. It seems in middle school all the little girls sport mums their mom gets them. I thought Em was joking until I saw all the pictures from the parade of the little girls with their ribbons and feathers. If you are unsure what a "mum" is well my husband says it a Texas tradition where they hang awards on our children like prize cattle. That is fairly funny, and pretty accurate, but it's a fun tradition. I still have my mums locked away in my chest from high school. So I ran to Michaels yesterday, and picked up supplies to attempt to make my first of. I am sure, many mums. I don't think I did that bad, and Emily is super excited. My friend Jennifer helped me throw it together. It is rather ridiculous we spend money on these over decorated things, but again it's all in fun. I am glad Emily is having fun in school, and wants to participate in the activities they provide. I had a good time in school, and I want her to have fun as well, while she learns. So far her grades are very well, and she is even doing well in her pre-ap classes. I did trim the feathers back behind the bear, but here is a look at Emily's first little mum.





Jude slept through the night for the most part, or I just didn't hear him get up. I walked in there to check on him this morning, and the boy was sideways in his crib with his arms in touchdown formation. It's clear he was NOT dreaming about the Cowboys. Anyway, he had wet his crib again which is the third day in a row. I even got some nighttime diapers last night, but it's clear the new amount of fluid Jude is taking in is taking it's toll at night. Jude is doing very well regarding aligning his hands, and pushing his head up. His therapist was very impressed yesterday when she came to see him. I have noticed a recent spike in his seizures/spasms when I am talking to Jude. My thought is that Jude gets very excited when I get home, and it's over stimulation, therefore sending him into the seizure. We have also noticed some very large spasms before he goes to bed. This could be another issue with the Depakene vs the Depakote he was on, and his levels are dropping. He will be seeing the neurologist soon to asses the situation. The neurologist has also mentioned doing a sleep study with Jude, and another sleeping eeg.

This weekend we are having a garage sale at our house. I was immersed in clothes, and other items in my loft last night, and attacked all of it with price stickers. It felt good to clean out items we would no longer need, and I am not done yet. I plan on attacking more closets tonight. It made me realize that it's time to do some cleaning in my life as well. I was talking with my best friend in the world Ginger the other day, and she pointed out to me some eye opening events. I think sometimes we have to let go of people that do not treat us as we should be treated. Sometimes we just need to simply things as much as possible. I am obviously a very busy person between my home life, my work, my side job, and the charity. I have little time to deal with people that are inconsiderate.

On Halloween we are having our third annual haunted cemetery at our house, and we will be accepting donations to Emily's Smile Boxes. Right now our donations are so low that we are questioning if we will be able to pull off the Christmas box making party. So if you are friends, or family that know where we live than stop by with your kiddo's, and see us on Halloween. If they are to scared to come to the door, I will bring a lollipop out to them!

I am in a contest at work regarding life insurance. If you are in TX, and have thought about obtaining some life insurance let me know. The most under-insured possession in America is our lives which should be the top insurance product sold. Nothing is more precious than our lives. If you are not in TX, and do not have life insurance, or only have insurance through your work, please consider getting a policy, and leave your family in a better position.

Wednesday, October 13, 2010

Put me on my tummy

This is Jude last night.




As you can see, he wants to be on his tummy again. He gets very angry when he is on his back. He is also tolerating his stander more, and still hates his tomato seat. I need to find something Jude can sit in that has a tray. Any suggestions? He has his child rite chair, but he still leans to one side a lot, and loses head control. I am open to other suggestions from special needs moms.

So guess who woke up sick today? Yep, Emily, AND myself. I am so annoyed, I have no time to be sick!

Tuesday, October 12, 2010

Emily's birthday dinner in review

Happy Birthday to my darling sweet girl. I am so proud of my Emily! Last night was her birthday dinner, and my great family came out in support of Em. She was also joined by two of her best friends Addison, and Casen. We all joined up at Mi Familia a restaurant near our house, and enjoyed some great conversation. Jude however wanted NO part of the party, and decided to be the designated party pooper. He didn't want to be in his chair, and insisted Mike take him for several walks. Finally, I took Jude out of his chair, with his feeding backpack, strapped it over my shoulder, and held him. He calmed down after that, and Mike ended up leaving a bit early with Jude.

So in our lives we are occasionally blessed with meeting truly remarkable people. I have mentioned before that back in the spring Emily participated in the celebrity waiter gala in Dallas to raise money for a worthy cause. There she met Steve Carbone, or AKA Reality Steve, http://realitysteve.com/. He writes a hilarious blog covering reality TV shows. When he approached Emily asking her why she was a waitress at the event, Emily told him all about her charity. He was so impressed with what she was doing that he blogged about her, and raised almost $3500 in funds. In addition he has made every Smile Box making event since, and he even showed up to her dinner last night. Guess what the man brought her? An authentic David Garibaldi http://garibaldiarts.com/ painting from Las Vegas of Terry Fator with all his puppets. Emily's face in these pictures will explain how she felt about the gift.







The rest of the night went well with only a few mishaps. My little cousin Ransom spilled his drink all over Reality Steve. I felt worse for Ransom then I did Steve. There is nothing worse than being a kid and breaking or spilling something. We all remember those days. Everyone tells you not to worry, but you kinda slouch in your seat anyway. Then Em's friend Casen decided to move a piece of steak on the sizzling hot fajita skillet.......and yep burnt his tongue, bad! I felt so SO terrible for him. Mike proceeded to give him a hard time, and I told him to stop. He said he was just filling in what his dad would say. Poor Casen, we tried some butter, ice, and more. I think he finally felt better once he had a sopapillas.

Tonight we are just hanging out. One the 23rd I am going to take my girl shopping with her birthday money. She was very grateful to everyone for coming last night, and said she felt bad she didn't get to talk with everyone.

Jude was up and down again last night, and the cat.......well he may be roadkill after I get done with him today! He woke me up three times!