Saturday, December 31, 2011

The Stars are bright......they shine tonight....

Today we had a birthday party to go to for little Sofia who was turning four. On our way to her house we stopped off to get some Emily's Smile Box supplies for our friends granddaughter that was in the car wreck I mentioned in my prior blog. While we were choosing items Emily brought me some glow in the dark stick on stars and asked me to buy them separate from her charity supplies. I complied and didn't ask any questions. Once we got home Emily took off to Jude's room and I didn't say a word. I knew what she was doing and I didn't want to spoil the positive energy. I heard the chair scooting across his room and Emily worked diligently for about an hour. Soon Emily reappeared and asked me to come look at Jude's ceiling and it looked like this.




Now his room it sprinkled with glow in the dark stars. The cutest part was she went up to Jude in her high pitched "Jude" voice and told him all about her gift to him. It was a good start to the New Year and a reminder that we should give of ourselves without question. It warmed my heart.

Jude seemed to really like her stars. He stared at them as we laid him down tonight.

Thursday, December 29, 2011

Jude, busy, a baby, and tragedies.

Today has been an emotional day. I am not sure if my emotion was caused by actual events, sleep deprivation, or stress. I am assuming it's from actual events. My wonderful great friend Jen is now on maternity leave at work. She had a bouncing beautiful 9lb 3 oz baby girl on Friday. She is healthy in every way and I am so thankful for her easy delivery.

With that being said work has been a beast. I expected it to be of such since I knew I would be picking up her shift with the help of her mom and our fill in Blake. I have done this before..........although I quickly realized I covered two jobs.........when I was much younger (insert laughs). So on Tuesday our amazing part time person Susie (who happens to be Jen's mom) let out a sigh at about 3pm and said, "I think I am fading". What a great response to a stressful situation. Work is actually great when it's super busy so in the end it all worked out. Although, I still love her response and I think I will use it in the future. "I am fading".

When I got to work today I expected a fury of issues to arise and our day would mimic the one before it. However, our morning was a duplicate but the afternoon was rather slow. I was able to get caught up on all my paperwork and had plenty of time to relax. However I had encountered sad news when I walked in the door today. An old friend had a granddaughter that was in a major accident. She was burned as she tried to rescue a friend from burning wreckage. She is very young and watched her best friend pass away. My heart BROKE for her. After that I heard that my cousins husbands dad was losing a portion of his leg. So this day was laced with a bit of sad information. I pray for all those that are encountering tragic situations. It's a reminder to me that life never goes as you plan it to.

I know I have posted some blogs that suggested I was struggling. I think I still deal with what happened to Jude and I still feel the heavy burden of our entire family's finances on my shoulders. I know this will change, but it's still very.............well heavy. I also know struggle because I know that I need a job that provides retirement. Let me preface this with letting people know that I understand I should have a retirement program in force (Easier sad than done when you need your entire check). Anyway, I am looking at my life in general. Man I am thankful I have a good job that understands I must leave when Jude is sick, however I know I must look around in the future. Eventually my boss will retire and I will need a different job. I want to go into claims when he retires. I have an adjuster license and VAST experience in insurance. I want to help put people's lives back together after a tragedy. I love helping people and the epitome of helping others would be to ease their pain in such a desperate situation as a total loss. To even think about my boss retiring at some point and leaving my job after so many years........sends me into a panic attack. To leave at all......makes me hyperventilate (grabbing a paper bag).

So let's turn our thoughts to Jude which is the basis of my blog. Jude is doing very well. Tonight I grabbed Emily's IPAD and I started the "monster" app that I have referenced before. The monster mimics your voice, pops balloons, and more. Jude LOVES "Leonard" the monster. He even hit the buttons several times to make the monster "talk". Jude also laughed hysterically when I tickled the soft part under his chin. He is such a good boy. I am thankful he has been healthy for so long.

Monday, December 26, 2011

A shave and a haircut 2 cents!

We had a good Christmas! We feel blessed and loved. I am thrilled that we have our two beautiful children with us, that we have good jobs, and our health. 

Today we gave Jude a much needed haircut. We put it off for so long because Jude just hates getting his haircut. I am not sure if it scares him or just bothers him.  So Mike, Charlotte, and myself started giving Jude his haircut and Jude was just miserable. He wailed, he cried, and he whined. I felt so horrible for him. Afterwards I kissed and consoled Jude and sweet Charlotte gave him a warm bath. The final results show a clean cut Jude.



Since we were home today we got to talk with Jude's new speech therapist whom I LOVE. It turns out that his speech teacher from school resigned and is now a home health therapist. Jude is her first case and he perked up when he heard her voice. I think he was so happy to see her. She has great goals for Jude in regards to communication and I think she will succeed. Since Emily now has an IPAD she plans to incorporate it into Jude's therapy. He is not advanced enough to use many of the Apps, but she said he will enjoy an app that has a big cute monster that pops balloons and more.

I hope everyone had a safe Christmas.


Saturday, December 24, 2011

From Bah Humbug to Merry Christmas.

Well I was suppose to have a lot of people over to my house for Christmas Eve, but that has fallen apart. For one reason or another people have had to back out. It's not their fault by any means. My cousin was one of the last families that was going to make it, but they had one of their little ones wind up sick last night... poor kiddo. So I have six little ornaments wrapped up on my counter for our ornament exchange, lots of food for everyone, three dozen cookies, and reindeer food that won't get used. I was all sad and Mike pointed out that we have our family here and that's what is important. So this morning I woke up and said...

Me: I had a dream that Em had gone to college and you left me so I really was alone for Christmas
Mike: Did I have a girlfriend?
Me: Yes
Mike: was she good looking?
Me: Yes..but I think you are missing the point
Mike: How old was she?
Me (irritated) I don't know!
Mike: Like 20's? I mean I need to know this stuff hopefully I got one in the 20's.
Me: (laughing)
Mike: Tell me what channel your dream was on so I can finish it
Me: your such a butt

Funny thing is I remember at the end of my dream I flew off to Maui. I was very proud of myself too for buying a ticket and jetting off. I was on the beach in a recliner with a drink in my hand enjoying the sunset...and I woke up happy. Moral of my story is that crap happens that you cannot control so make the best of it!

I wish everyone a Merry Christmas and I sure hope everyone feels better soon! I am so sorry people are sick during the holidays, shoo wee! My dad and his wife are still coming over and we having Tex-Mex tonight since tomorrow everyone will be having ham and turkey.

So we watched "Rise Of The Planet Of The Apes" last night. Of all movies.........Emily cried five times. I tried explaining to her that the Monkey's were CG, but she was still really upset at the animal abuse.

Jude has a bit of a fever today again, but not much. He just seems to get an elevated temp lately and then it will go away. The nurse is keeping track of him today and making sure he is alright.

MERRY CHRISTMAS EVERYONE! All my love!


Wednesday, December 21, 2011

Reading books and a bit down

I have been reading Jude books at night lately and he seems to love it. I take great pleasure in sharing something with Jude that I shared with Emily. It was very important to myself and to her her father that Emily was read to every night. When she got older she would then read to us. I thought she was brilliant at age 3 when she read "Brown Bear Brown Bear" to me, but then I realized she had memorized the book. Still not bad for a three year old. Jude watches the book as I turn the pages, he squeals, and talks to me as I say the words aloud. I think he truly enjoys it. I always say there is more going on in his mind than we think there is.

I have been a bit down again for pure selfish reasons. Mike has not gotten promoted at work yet like we anticipated, but I am grateful he has a job. We are crossing our fingers and hoping that Mike gets his lead position with a nice salary and full benefits. We still debate about having another baby. We both want one, but are very scared because of Jude's condition. We are scared because of money and because I would want to have a more flexible schedule. So who knows.........and we are running out of time. So It's a little disheartening to think about letting a dream go I guess. Looking back I guess I should have started my own agency at some point and I would be in a different position today.

It has been SUPER busy at work for the last two weeks. I like it like that, but whew! As of three o'clock today I was officially caught up and it's officially 100% DEAD! Everyone is starting to leave out for the holidays. I am primarily done with my shopping so we just have to sit back and enjoy our family, friends, and good memories. I hope everyone has a good holiday!

Tuesday, December 20, 2011

What is THAT? (Arrow pointing up)

Anyone know what that big thing is above this post? lol! I am blogger challenged! Help!

For a quick update...Mikey is sick and therefore that means the world is coming to an end. When Men are sick they are always "dying". So he tossed and turned all night and Jude was up all night. About 5:30am Mike went upstairs and I slept like a bear hibernating. I slept so hard for that hour that I have had a spring in my step most of the day.....go figure!

Our new speech therapist is coming to evaluate Jude the Monday after Christmas. I am thrilled I will be home for the meeting. Also, my friend Jen left today for maternity leave. Many prayers for a safe and fast delivery for her on Thursday. I will primarily be the only licensed agent at work for six week, but I enjoy staying busy. It makes the days quick and keeps me going.

Anyway, any help with the above said "HTTP" issue would be great. Thanks!

Monday, December 19, 2011

Jude

So Saturday Jude's temp rose again, but I asked our nurse to not give him Motrin and to see how things went. I knew the temp could be fighting a viral infection off. About two hours later the fever broke and so far has not returned. It was so odd!

Jude was very smiley when I left today and I am looking forward to seeing him when I get home.

Saturday, December 17, 2011

A fever and a party

Well Jude has a fever today for some reason. It's not real high, but he is still on the antibiotics so we are wondering what the deal is. He did whine a lot last night while he was sleeping. So we are watching him to see what is going on.

He doesn't seem upset today, but we are watching him. I thought it might be his teeth again, but there aren't red. He actually felt a lot warmer to me than 99.4. I am not sure I trust these under the arm auxiliary temps. I really want to get Jude one those head scan thermometers that the hospital uses.

Anyway, we have my cousins foster baby's first birthday party today. I have really grown to love that little bug and I am looking forward to his party.


Monday, December 12, 2011

My hubby loves me!

So this weekend I realized something. My husband loves me.............I mean he really loves me. I look in the mirror and see my reflection now and just feel terrible. The years and the stress have aged me. I still try to take my walks and would love to be a size 6 again, but I feel like I am walking against a hurricane. There is no time, there is no money, it's just well... bah humbug..lol. Despite my appearance I realized with a warm fuzzy feeling inside that he loves me for who I am. He still walks by me as I am cooking and hugs me. He still wakes up in the middle of the night and says, "You are the best mom and wife anyone could have". He still says "I am going to marry you someday". He may have his moments, but that guy loves me. I am lucky! Mike is my soul mate and just such a great guy. I love how he uses "Jude's" voice to cuss about toys and how Jude wants to be ready for the "zombie's" in 2012 (don't ask).  It's so wrong, but hilarious. I also love how sweet and gentle he is with Jude and how great he is to Emily. He is the ultimate bad boy turned good with rough edges and I love him!

Here are some pictures from this weekend.


My big over 40 pound boy! You know if we stand him up he comes to my waist...and he is THREE?





Friday, December 9, 2011

The show

Well I am feeling pretty run down today and my throat is sore. Not sure if Jude gave me his stuff or if I am just exhausted from Emily's play, Jude's being sick, etc. I need to be better by tomorrow because I have a lot to do! Tonight is the last night for Emily's show! She did great in "Yes, Virginia There Is A Santa Claus". She has been playing "Mary-Lou". I know I am her mom, but Emily truly has a natural talent for acting. Jude came with us to watch the show last night and he enjoyed it until everyone started clapping. He got very scared and Mike had to leave with him. Poor Jude!

Here are some pictures of Em from last night.





Wednesday, December 7, 2011

A little update on Jude

Well little Jude had a rough time yesterday so we took him to the after care Cook's ER that just opened near our house. They escorted us right back and we got Jude all checked out. Turns out he has a sinus infection so they sent us on our way with some antibiotics. Once we got home Jude just didn't want to lay down and try to sleep. So I gathered him up and held him for until almost 10:30. He just wanted to be snuggled. He also sounded so strange when he was breathing. He kept making a crackling sound, but since I was told his lungs were clear I didn't worry to much. He then started making this weird parrot sound with his coughing. When Mike came downstairs I suggested the Abuterol. When Mike heard the said Parrot sound he immediately administered the Abuterol. Once that was done Jude settled down and went fast to sleep. He only woke up twice last night and had a smile on his face this morning so that's encouraging.

I am going to check on him throughout the day through Jude's nurse. Hopefully he will feel better today after the antibiotic.



Tuesday, December 6, 2011

A sick little Jude

Jude is sick. We escaped it for awhile, but my little man just really isn't feeling well. It started Saturday when Jude got up at 3:18am and didn't go back to sleep until 6am. We knew this was out of the norm for him. Basically the last few nights have continued with him being up and down, cranky, whining, and not himself. I wasn't getting my normal amount of smiles either. In fact, last night his smiles seemed a bit forced. Jude was also very difficult to get to sleep last night. Once he finally went down he woke up about an hour later and I didn't get him back to sleep until 12:30. If he doesn't sleep...his body won't heal. Keep in mind that Jude was doing all this through his sedative. He is now coughing, congested, and just seems achy. We keep the rotation of Tylenol and Motrin going........although we ran out of Motrin and I need to grab some on the way home. If anyone is by my house today and can drop off some Children's Motrin I would be grateful. So little Jude is out of school today. I am sure he will miss his teacher.


Charlotte said his throat is very red, green drainage is coming down his throat, no fever this morning (but has had low grade), his lungs sound clear, but his respiratory rate is in the 40's vs his normal 20's. You just never know with Jude?? This could be a simple cold he is battling or it could turn into something serious. Charlotte and I are wondering if this is a reaction to the flu shot? I know systematic reactions to flu generally last 1-2 days and we are going on five days with the symptoms getting worse. Jude got his shot on Thursday 12/1.

You just never know. I hate the unknown. It could be just a common cold.........or it may not. The may not is what always keeps me on my toes. It also keeps me unable to tune out Jude's whimpers at night like Mike tells me to. Since I cannot tune them out I tend to keep Mike awake because I am awake. Our house is a pleasant place to be right now..lol. Anyway, I put a call into the doctor and I am waiting to hear what she says. My guess it's either the flu shot, a cold, or an upper respiratory infection. The later is out major concern because that is the initial stage of possible pneumonia for Jude. Jude has started to vomit again due to his congestion and that seemed to be Charlotte's major concern due to the possible aspiration.

Hopefully he will be well soon and this will all be nothing to worry about.


Thursday, December 1, 2011

A doctor visit, an email, and a van

I took the morning off to get Jude to his check up with his pediatrician. The doctor said she thinks the vein in his neck did warrant a full CBC. She also ordered a liver panel since we know the felbatol can wreak havoc on the liver. She took his blood pressure which was in normal limits. Jude was fairly happy while we were at the office until the took his blood. Normally Jude is a little trooper but the nurse couldn't find his vein and the needle was in his arm. I saw her wiggle the needle around and my body cringed at the thought of the pain. Jude soon became distressed and we knew we were in trouble when his bottom lip poked out. The nurse finished with the blood work and gave Jude his flu shot. This sent him into more tears so I picked up to soothe his hurt. I said "Mommy will rescue you!". Charlotte (our nurse) thought it was funny, but the doctor's nurse must not have thought it was that cute. Sheesh lighten up lady have some coffee or something. So now we just wait on the blood results.

I was contacted yesterday by a young mom who is in a similar situation I was in a few years ago when I was told Jude's brain vents were increased. I struggle sometimes about how candid I should be with these moms. Why do I struggle? Because it's their decision on what to do and how to move forward. I explain them just how amazing Jude is and how much he has done for our lives. I explain what an impact he has made on everyone around him. Although, I also explain just how difficult our life is and Jude's life is. Despite being pro-life people NEED to understand what they are getting into so I ask people to take their blinders off. Our doctor once told us they have an alarming rate of special needs children that are left at hospitals or dropped off. I cannot imagine Jude just laying somewhere with no one to pat him, love on him, or make him smile. This life is HARD, but it would never be that hard for me. I love Jude with all my heart. So put the dreams aside for a moment of the perfect child and make the best decision for you, for the baby, and for your family. Whatever that is don't ever look back with questions.  No one imagines having a baby with special needs and you cannot imagine what it's like unless you have lived it. So therefore, I never judge anyone for whatever decision they make. I have been contacted by many moms over the past few years. They have all made various decisions. My heart aches for each one that emails me. I hear the pain in their words and I know how they feel. I know what lies ahead and all I can mutter is what I was told..."the first year is the hardest". It's so true.

Okay back to more positive issues. I really really want to work towards getting Jude this van. The chair is perfect! Not only does it lower to easily put Jude in his chair, but it reclines. Jude needs to recline to keep his head up and it helps with his aspiration issues. Jude coughs uncontrollably at times when he is sitting straight up. We have had to pull over to yank him out of the car seat to help him breathe again. So this is on my list. Dear Santa ~ can you swing it? Just kidding..lol! I was told that it's much safer to keep children and young adults restrained in a seat is possible vs a wheelchair when being transported. I am not sure I can continue to life him, but if I can this is a great solution.




Tuesday, November 29, 2011

Christmas gifts for the disabled baby (child) that cannot walk or talk

My friend sent me a link yesterday to a blog about what to get kids that are disabled. I have also been reading some blogs about the same subject on my own. The ideas were great, but not fitting for Jude because of his situation. So therefore, I decided to come up with my own Christmas idea list. I thought it might benefit someone reading it who is looking for the perfect gift for their special child, their special relative, or their special needs friend. Jude cannot grasp, he cannot sit up, and has limited neck control. We are working on these things, but we understand Jude's limitations and we accept him the way he is. So over the years I have found some items that we like. I am sure Jude's nurse could add a great deal to this list, but she is at school with baby Jude. So I am going to try to list some practical everyday items and some non practical items.


Converse tennis shoes. They don't have to be Converse, but they need to have the same look. These are flat sole tennis shoes. When we first started our Journey we thought Jude needed shoes with an arch to help train his foot, but we have since found Converse shoes work best. We are able to take the lining out and fit his AFO's (braces) and foot into the shoe. The need to have the low sides and the shoe strings to tie...not the slip ons.
Two piece Carters PJ's. Again, they don't have to be Carters, but they seem to have great deals and hold up well. I also like Crazy 8 and gymboree pajamas. They need to be two piece because of the G button placement. I love onsie's, footed sleepers, and all those cute one piece pajamas, but they don't work anymore. You must have easy access to the G button in the tummy. Kids with special needs can never have to many pajamas. Jude loves them because they are soft, easy to move in, and warm.

Cd's. Jude loves music!! He will turn towards it. About a year ago I got Jude a personalized Mickey Mouse CD which he loves. Although, it sounds like someone is sneezing every time Mickey says "JUDE". Anyway, he loved it so much that his weekend nurse Allen got him a Barney Cd which Jude laughs to and this Christmas he is getting him an Elmo CD. You can find these Cd's online here: http://mykidsmusic.net/

Jude likes anything that lights up and sparkles. He must take after his mom that loves anything with bling and sparkles. Anyway, we received a sparkle lava lamp and it has been a big hit with Jude. He will stare at the lamp and coo at it. Now take note these lamps get very hot! Put them on an even surface and never leave the baby unattended with them.


A weighted blanket. We have not obtained one of these for Jude yet, but it's on our list. Weighted blankets can calm irritated children and help them sleep. I found this website that you can use for reference. http://themagicblanket.net/. These can come in handy during a storm too.



Switch Toys, light up toys, baby mobiles - Even though Jude cannot grasp he can bat at objects. He has made progress on batting at switch toys or toys with buttons like this school bus.

Also regular baby toys that you find at the store work. However it's better if you can find ones with front facing keys that do not have to attach to a crib. I want to make a line of these because they are easier for special needs children like Jude to hit when laying down or in this tomato seat. This one is perfect if I had something to attach it to.
Everyday essentials. Jude uses a lot of lotion, wipes, socks, Qtips, and baby wash. Yes, I said baby wash. Jude is getting pretty big and it's hard to maneuver him around in a bath tub. Johnsons head to toe baby wash is a must! This will not sting his eyes and you never have to change bottles while washing his body and hair.


A spinning toothbrush. Jude must have his teethies cleaned several times a day. Primarily after he has his breathing treatments as the medication can cause rot. He loves his spinning toothbrush and we sing the "brusha brusha" song while we complete our task. Another idea is to include children's toothpaste with the brush.

The Boppy - Oh God Bless the person that invented the Boppy! Bet they never knew this was a special needs kids DREAM! This helps Jude stay in place in bed, helps him stay sitting up when getting his breathing treatments, and helps him position for therapy. Your child getting bigger? No worries......they have adult Boppy's!
The Child Rite chair. When Jude was a little we discovered the great and powerful Bumbo chair wasn't going to cut it. One of my all time favorite idiotic, you shouldn't have said that, comments came from someone that just couldn't understand that Jude couldn't sit in a bumbo. Anyway, some of our great friends banded together when Jude was little and got him this awesome child rite chair. Jude now has to use his horse collar with it, but it sure was a life saver when he was little. I highly recommend it. http://www.childrite.com


With that being said they also make another great piece of equipment that I am interested in getting Jude to try out. Which is located here: http://www.childrite.com/tumzeeblue-info.html. He may be to big for it now, but it looks great for teaching head control.

Swings - Some special needs kids love swings! Jude is one of those. A platform swing is perfect for kids without a lot of neck control.



Movies - Jude loves to watch TV while he is in his stander. Many special needs children suffer from cortical visual impairment like Jude does. This causes his brain to confuse what he is seeing and therefore he will look away from the object. However, he loves anything red like Clifford the Big Red Dog. These also make great stuffed animals and books.




Last but not least special items from the heart. Jude doesn't reach your standard milestones so receiving "normal" gifts and boxes of hope are treasures. A photo album, a letter from Santa, hand print plates, and more are wonderful. One of my favorite items I have found is listed below. It keeps our special ones close to our hearts always and in our memories forever.



Merry Christmas.

Monday, November 28, 2011

sleepy and bulging vein

Jude is not sleeping again........and I am not sure why. He is fighting me going to sleep and doesn't stay asleep. I think I counted six times I got up last night or more.  I know this takes a toll on his little body. I can also normally handle this, but I think age is catching up to me. Today I felt just exhausted when it was time to get up for work. I have noticed my shoulders hurting, my sides hurting, my heart is fluttering, I get dizzy,etc........I am a bit worried. Nothing a doctor can do.......it's just the affects of not resting well for years. So I worry more about Jude's little body ...........and how not sleeping well affects his health. I am older and stronger, but what about him?
Over the weekend Allan and I noticed a bulging vein in Jude's neck. I am sure it's nothing to worry about, but I am wondering if any other SN moms have noticed this in their kids? I am trying to not think to much of it, but Jude does have issues with his veins when trying to put in an IV. So why would one in his neck be so predominant? Strange the things you worry about in Jude's situation. I had actually noticed it some time back, but chalked it up to an over reactive mom. It seems it's bulging a bit more and now that the nurse noticed I am a bit concerned. So I talked to Mike about it and we decided to have Jude seen by his doctor on Thursday for a check up.

So I do have a cute video to share.


video




Saturday, November 26, 2011

A nice day and a boy that won't sleep

Jude has had a great day.......well up until about 8pm. He didn't nap all day and since he was up at 7am he is very tired. He was also up several times throughout the night last night. So he has tossed, turned, grunted, and moaned even through the sedative tonight. I sometimes wonder what goes on in his brain and when he needs extra help to ease any pain he might have. I am going to chalk this night up to a little boy acting like a three year old who doesn't want to sleep because he has had a fun filled day.

Jude's futon has really been a life saver. It was so much easier to change him today, feed him, play with him and more. We also used his tomato seat for awhile today and his stander. We worked on saying words today and using his arms to signify what he wants.

I had a good day with Jude.

It's mommy and Jude day!

It's mommy Jude day! Our nurses are off today, Mike had to work, and Emily is at her cousins. So I got up with Jude and changed his clothes, changed one very stinky diaper, got his medications done, hooked up his feeding tube, did his breathing treatments and now he is on his futon chilling and I am on the couch. We are watching Jack Hanna. Well I am watching and Jude is playing with his musical toy on his bed.

My plan is not to do much today but spend time with Jude. I am just going going to relax and I think we both may stay in our jammies all day.

I had to tell you guys what my husband said the other night. The movie Gone With The Wind is my all time favorite movie along with Wizard Of Oz. In fact...Emily's middle name is Scarlett. So we were chatting about the movie and I mentioned how I always loved Scarlett. Mike said "You are no Scarlett you are a Melanie" I said "Well I guess I am". He replied "Would you really want to be a Scarlett?" I guess I wouldn't, but I never thought if it that way. I always admired her spunk, her beautiful clothes, and the character. In real life I guess she wouldn't have been a very good person huh? So I was watching the movie again this weekend and I smiled a bit when I saw how nice Melly is. I guess I now take his comment as a compliment.

Friday, November 25, 2011

a ring and a turkey day

We had a great Thanksgiving. Jude seems to be in a good mood and he is happy at home on his Futon.

I have mentioned before that I have not been able to wear my wedding ring because of a reaction to the nickle in the white gold. The band was just to thick and despite all my efforts I just couldn't make it work........trust me I tried every piece of advice anyone could leave me. So we finally decided to sell it and that was a success. I have spent the last year looking at different rings. I have driven my friends and family crazy with pictures. I am on first name basis with several jewelers in the area because I frequented their showcases. Finally today.............on black Friday, which I normally protest.........I found a HECK of a deal and an awesome ring! I am very happy I am married again..lol. I am going to have to get it resized, but it's currently on my finger.

Tonight I am going to my dads house to have another Thanksgiving dinner. Then Monday I plan to drink slim fast ALL week.......



Tuesday, November 22, 2011

Sweet girl

Emily left this for me last night. She sure is a sweet girl! She just wanted to say thanks for what I do.


She also gave Jude and I massages last night. This morning I got up and Jude's little socks were on my floor and I remembered that he got a foot massage from his sister.

So last night Emily and I were looking at vacation spots and I remembered something Mike and I said we would do prior to what happened with Jude. We were going to get remarried each year on our anniversary.  Next year will be our fifth anniversary and our 40th birthdays...........FORTY? gees. Anyway, I am thinking I may try to plan something and invite whaetver friends and family want to join us. That would be a blast!

Monday, November 21, 2011

a visit and a throw up 1 2 3

My aunt and grandmother went to visit Jude today while I was at work. Emily called to tell me that Jude had been throwing up since they got to our house. Sometimes Jude just does that. I have spent upwards of an hour with him retching and puking. Although, he was a bit restless last night and couldn't seem to get comfortable. I plan on watching him close to make sure he isn't coming down with anything.

My guess is Jude just got startled, work up with a seizure, and kept throwing up. Like Sands through an hour glass these are the Days Of Our Lives! lol. Poor Jude, I know he hates it so. It's so hard on his little body.

Friday, November 18, 2011

Turkey cards and Tears

On Wednesday night we had the contractor that converted our dining room into Jude's room over to estimate converting our closet into Jude's bathroom. I wasn't expecting to get choked up, but I did and I am not sure why. We were standing there in my very unorganized closet and I just .........shut down. Mike kept mentioning the type of bath chair Jude needs. The nurse prefers one that rolls into the bathroom and then lays back into a flat surface. I listened to everyone talk about what will be best as Jude grows older and I just stayed quiet. They discussed door widths, rolling surfaces, a sink for his medication, and more. When we moved in Mike and I discussed re-doing our bathroom with a bigger tub and nicer tile, but I guess I never considered my closet would need to become a full wet bathroom for Jude. I want what is best for him, but it's still a little difficult to think about it all sometimes. I was very overwhelmed and I still am. I think I need a few days to decompress and take the remodel in.

When I got home last night Mike was insisting on showing me the video about the teacher that was mistreating his special needs student. I explained to Mike that I really didn't want to see the video because I am well aware of the cruelty in the world. He really wanted me to see it so I took a few minutes to watch the clip until I couldn't take anymore. I am very grateful for Jude's nurse, his teachers, and the school district we live in. Our school district has been amazing to Jude and to Emily. Emily is visiting a performing arts school today and deciding if she wants to audition to try for a scholarship next year. I struggle with this idea because I love her school so much. It will be a family decision based on her visit today.

A reflection of Jude's teacher is shown in Jude's Thanksgiving card to his family. When I opened it last night I was a bit speechless. I didn't cry I just sat and looked at the outline of Jude's tiny hand making the staple Thanksgiving Turkey. I have Emily's when she was tiny and now I have Jude's. I never thought I would have Jude's turkey hand. Our nurse explained what a tedious task it was for Jude's teacher to obtain this artwork. She was insitant she was going to work with Jude to complete the piece and with Jude in smiles she did just that.







Thursday, November 17, 2011

Good news and Kim Kardashian

So the other night we had someone come meet with us from Rachel's Challenge in regards to Emily's charity. They have great ideas in mind and I will share them with you once everything is in place.  I don't want to speak out of turn before everything is finalized.  I do have to report that while the visitor was in our house Jude was on Mike's tummy and said "Mamba!" clearly. We all looked at each other and said "He just said a word!". We were all very impressed! I have been trying to get Jude to say it again, but he just smiles at me.

So I have been very irritated lately with all the news surrounding Kim Kardashian. It's to the point that my husband has picked up on my total disdain in regards to this woman. We have a nightly tradition of watching TMZ together and laughing at the funny songs they apply to people. Well now he says "Let's go watch TMZ so I can see Kim K!" If I could roll my eyes further into my head they might get stuck. Why am I so annoyed with her? Several reasons. 1. Jealousy! The girl does nothing except get surgery, trainers, and chefs to make her look good and she earns millions. I am still struggling just to get a wheelchair accessible mini van. 2. She thinks we are all IDIOTS and I don't care for anyone that thinks I am stupid. Does she really expect us to believe that her marriage was legit?

If it was legit it makes me even angrier at her! You spend millions upon millions that would help so many people for this over the top ridiculous wedding and the marriage lasts SEVENTY TWO days? Are you freaking KIDDING ME? The death or severe illness of a child is generally the cause of divorce in marriages and my marriage has survived. Granted there has been a lot of yelling matches, but we work through it. With all her millions she couldn't afford some counseling to attempt to make her marriage work? What are you teaching the young teens of America? I believe it teaches them they a quick marriage and quick divorce is alright and that money is more important than love.  My thoughts? Stick a sock in it and shut it Kim K. I am tired of hearing from your mouth! Let's find a better role model for our youth!


I have to admit I do like her sister Khloe with her harsh brutal mouth that reminds the rest of her family they still live on EARTH! I remember hearing Khloe once tell her mom Kris that she had used the word label in regards to the sisters five times in a few minutes and that her mom needed to remember the sisters are human. Let's hear more from Khloe and less from Kim.

 I wonder what that family would do if they were bankrupt?

Tuesday, November 15, 2011

A place for Jude

So we were able to get Jude's futon for the living room this weekend and it's been wonderful! Both nurses said it made things so much easier with Jude. Here is a glimpse at it.


He still will be on the floor during his exercise time on his mat. Other than that he is in his seat, his stander, or on his futon. Jude seemed to like his new place in the house.

Emily's play went very well, but I was exhausted after the week. She did such a great job and I really believe, without sounding like a biased mom, that she has true natural theatrical talent.

Wednesday, November 9, 2011

Jude's school picture and more


I studied this picture last night when I saw it pop up on the infamous facebook. I thought of a million things it could say. I don't remember my exact thoughts when it was taken. I know I was looking into my neighbors yard probably watching her child play. I was probably wishing Jude could play with her, but protecting him and loving him for who he is at the same time.

I received Jude's school picture and I think it's pretty good! It's his very first one.