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.


Monday, November 7, 2011

My lil wolf!


Here is Jude showing off the wolf ears his friend Maddie let him borrow for Halloween. Since he got sick he turned into Woody from Toy Story, but he just had to show you guys!

I love my little guy. I am thankful for every day, every holiday, and every minute I am blessed with him in my life!

Thursday, November 3, 2011

The panty escapade.....yep two blogs today!

So in my limited time on lunch I ran to the store to find an outfit for the prelim pageant I am hosting on Saturday. I felt I needed to look nice and represent my company well. So I wandered around the store picking out multiple items to try on. I went from one side to the other carefully maneuvering through the aisles and clothes. I then took them all back to the dressing room to try on. The attendant simply motioned me back telling me stalls were open without helping me in. A little strange, but I simply went about my business. 

Once I got into the room I started trying on clothes and then suddenly something caught my eye. This glaring hot pink object laying on the floor was demanding my attention. I darted my eyes down and thought, "Oh dear God no! Are those MY UNDERWEAR?" Oh yes....yes they were! They were laying there in all their old thong glory just waving at me like a flag. It took a matter of seconds for me to conclude that the said underwear had been stuck to my sweater that I had pulled out of the dryer this morning, but WHERE had they been stuck. Oh I prayed they had been stuck to the inside of the sweater......but I didn't remember feeling anything bulky. Quickly I pushed the undies into my purse and scampered out of the store to hide at Cafe Express. I reached into my purse and texted my friend at work, "Jen, did you see laundry hanging off of me?". She replied "LOL, why?". I thought "Oh no she did see and didn't tell me!!" Luckily she text back that she didn't notice any.....all the while having a great laugh I am sure.

Before I left for lunch I emailed my boss asking him for a day off in January. We are taking Emily to an event and I really needed off. I knew he would be hesitant because Jen will also be out. To my happy surprise he replied that it shouldn't be a problem. Once I divulged my panty escapade to Fleck she replied that my boss probably saw them hanging on my sweater and had to give me the day off because he thought, "that poor girl just needs some help".

Only me people .....only me! Funny thing is they weren't even nice hot pink thongs!


Halloween and progress

Well Halloween went well and today I am depositing some money into the Emily's Smile Boxes account for the donations we received. Our little haunted cemetery is beginning to grow. This year we had close to 150 kids come by. We did have one horrible incident. We were outside getting stuff together and we would take turns checking on Jude as he finished eating. I guess he bit his finger because he got very upset. I went running in to console him but he made himself throw up.........all over his big bad wolf outfit. So Jude then became Woody from Toy Story. I felt so bad for him.





So believe it or not I had an impromptu garage sale this past weekend at my house. My friend Fleck helped me and I am proud to say that I raised enough money to re-do the loft!!! I moved all the Regal Princess and Emily's Smile box stuff into Jude's old room. I decided not to paint because the colors match her Smile Box theme. Here are some pictures.







We have contractors scheduled to give us bids to convert the bathroom for Jude. It's up in the air on how it will be done right now. We will be going through our closet for sure, but the big questions is converting to a 3/4 bath for Jude or just making ours bigger for his lift and create a roll in shower. I did contact our MDCP case worker who advised me on the funds that are available regarding remodeling (thanks Jocalyn) and the van. The problem is we have to get the van to get it converted. That will take time, but we are working on it.

I did have an unpleasant experience in regards to the wheelchair fitting. I think the physical therapist was a bit thrown off that the medical supply company came up to fit Jude during one of Jude's therapy sessions. I had actually called ahead two weeks before to confirm this would be okay. I also took my lunch hour to come up and sit with them while they were fitting Jude. The medical company explained they thought the physical therapist would be the best person to advise on what type of chair would properly fit Jude. I guess she didn't see it that way. Again, I wish there was a rule book. I work and I have no idea that standard procedures.

Next week is the premier of Emily's play so it will be a very busy week for me. It seems she has volunteered our dog Bigs as To To in the Wizard of Oz........this should be interesting!