check up update

Jude's check up went well, I think he just has a cold. Mike said the doctor salined out his nose really good. They said they didn't hear anything in Jude's lungs which makes me feel much better. Jude has began sleeping on a pillow to help the drainage at night, although the pillow make me nervous. I find myself constantly checking on him to make sure he is not in a compromising position. I am relieved the pillow make him a bit warmer because his hands were always ice cold in the morning.

I am feeling run down again, and I am just really ready to beat this cold 100%. There is nothing that gets on my nerves more than not being able to taste my food, and I just hate being sick. Here is to being well tomorrow, and a good New Year.


Ps ~ Sorry for getting over excited earlier, I go overboard sometimes!

A few lil updates, and an upset friend

Whew, I am no longer miserable so that means I am starting to heal, hooray! Jude still has a very croup sounding cough, so he is going to the doctor today at 11:30. Mike, and I are conscience of the fact that Jude is more susceptible to pneumonia, so we will always be cautious. Jude is still making progress eating solids, but it's only once or twice a day. Regardless we will take what we can get. He is also still drinking well, but is still a bit under what he should be taking each day. I remind Mike that Emily is a finicky eater too, so some children regardless of issues, are just different.

So my friend Jocalyn and Kendall wrote about an experience at a well known chain restaurant the other night. Out of respect for her I won't list the name of the company. You can read about her unfortunate experience here http://kendallbriggs.blogspot.com. This post really touched me, because I felt her pain, and her emotions. We too visit local eateries if we venture out to dinner, because they seem to be more understanding. We visit One Fish Two Fish in Roanoke on a regular basis, because they have a little table in the back with a large space for Jude. The Dove Creek Cafe in Roanoke is so nice that they half our bill at times with a simple, "you guys are special". It's places like that with people in them that warm your heart, and ease your stress. That's why we frequent them so often, and tell others about them. Although, when you hear of ignorant people in other places it's so frustrating. We encounter ignorant people on a day to day basis so we special needs parents try not to get upset, but educate. In a situation like Jocalyn's where there are multiple people displaying stupid behavior there is little you can do, but get frustrated! I am sorry she went through this because her family is just so nice.

I will be sure to update regarding Jude's doctor visit. We are skipping speech therapy today so Jude can get in with the pediatrician. I hope everyone has an amazing New Year.

Christmas Pictures

Good news is Jude ate some more solid food yesterday, and is really chewing. He is also trying to hold his bottle, and is finally making progress. The bad news is Mike and I are both sick!! I am suffering through work with a very stopped up head, and I just want my bed. So I am keeping this shot, and sharing pictures from Christmas. Also, I am sharing Emily's puppy video, which is priceless. You can literally see the moment she realizes she is getting a puppy. We had drilled in her head that this would never happen, because we really didn't think it would. We found the ideal puppy because he is just wonderful!!





Really???




Baby Dakota :)






Hope you had a great holiday!

Christmas recap

I will have to post pictures, and the video Monday from work, but I wanted to share our Christmas Story. I worked Christmas Eve until three, and we were anticipating getting Emily's dog that night. Yes, Em was getting a dog for Christmas. About halfway through the day we noticed that it began snowing.......and snowing.......and snowing. I couldn't believe my Texan eyes as I watched massive amounts of snow hitting the ground. In addition to that the 45mph wind made the visibility eventually about oh 0%!! Once I finally made it home Mike had to leave to go get Emily from her dad. Our plan was that Mike would make an excuse to get back out once she went to sleep, to pick up the p u p p y. Our plans drastically changed when it took Mike over two hours just to get Emily back home. Our highways were shutting down, the roads were slick, and the snow kept falling. We were saddened to realize all our efforts had gone to waist, and Emily was not getting her puppy for Christmas. Let me explain what I mean by our efforts.....

We have told Emily every year when she has asked for a dog that with Jude's issues we didn't need anymore stress. First it was the hard pregnancy, then Jude, that kept her from getting her wish. This year has been extra hard on all of us, and for Christmas we wanted to do something special for Em. I told my aunt Caron that I was considering.....just considering getting her a dog. She talked with my cousin Candace, and she had a Yorkie poo that needed a new home. It was perfect! The puppy is 3 years old, about 4 pounds, black, potty trained, crate trained, and just perfect. So our friend Gina that works for the airlines flew up, and picked the puppy up last weekend while Em was with her dad. We kept the puppy here until Emily got home, and my aunt Docia then took "Bigsby", and we set the plans to pick him up on Christmas eve night. So you can now see why we were so sad. So Christmas Eve night I let Emily open a large box that was filled with dog stuff. Emily opened the box, and looked at me a bit perplexed and said "dog stuff??". Mike replied "you got her dog stuff when she has a cat". This really threw my naturally blonde daughter off, and I finally said "Do you know what this means Emily". Then she got it, I will save her response for you, because there is no explaining it, and the video is priceless!!!!

So we spent the rest of Christmas eve in a our quiet home with some lasagna, and salad. Then we snuggled into our beds waiting on Santa to come, only to wake up to a very stopped up Jude at 2am. He was so stuffed up, and just miserable, hence the increased seizures. I finally have him some Benadryl, and he finally fell back to sleep. Then a bouncy girl came in at 7am to wake us up informing us that Santa had come. The day was delayed because of the still icy conditions outside. Once we got going though it turned into a fabulous day. I cooked a huge meal, and my sister joined us. Then Bigsby finally made it, and Emily was so excited she could barely stand herself. Jude was feeling much better so I am convinced the weather, and allergies were bothering him. He loved his big caterpillar we got him, and he even sat with us at the Christmas table voicing his opinion. Jude was very vocal this weekend.

Today I went to see my friend Sarah, and her new baby girl Dakota. She is so tiny and small and just precious. We then headed to Mike's moms so we could see them for Christmas, and we all went to a Mexican restaurant for some great food. Before we left I asked Mike to hand me a baby spoon from the diaper bag, and I attempted to feed Jude some refried beans. I carefully scooped some of the beans up, and placed the spoon right by Jude's lips. To my surprise he starting eating them.........really eating them. He didn't just open his mouth for me to shovel food in, and then him spit them out. No, he started chewing on the spoon, wrapping his lips around the spoon, and eating the beans. I was so excited that I fed him probably 3/4 a normal baby food jar. We were thrilled, and this leads us to think that Jude really wants that texture, and real foods. He is not fond of jar baby food, so we are making our own baby foods. Oh what a prayer would be answered is he started taking more foods!!!

So even though the puppy fiasco threw things off we had a wonderful blessed Christmas. We cannot wait to share pictures with everyone. I hope everyone had an amazing Christmas. A big thank you to those who helped us make another families Christmas special. Their children got an amazing amount of gifts because of your generosity, and the family was very grateful. Em's puppy has been a perfect angel going outside for each potty, playing with her, chasing our cat, and loving on Jude.

Merry Christmas

We are having a white Christmas in Texas, which is amazing!

I would like to wish everyone a very Merry Christmas. Due to the support of those that have read my blog, our family, and our friends we have made it through this year. We are blessed to have our baby Jude at home for the holiday, and I have a beautiful girl there too. Tonight will be filled with working on surprises for Emily, because she deserves an amazing holiday.

I hope that each of you have an amazing holiday filled with health, and happiness.

A few movies

Emily came home last night, and we were so happy to see her. We decided to watch the movie "The Blindside" last night, and we also ended up watching a bit of the Sundance movie "Autistic everyday". Mike had told me about the movie, and suggested that we watch some of it. He said that he was teary pretty much through the whole movie, and I found that I was too. Emily even got pretty teary watching the movie, and I implore you to watch it. In the world of special needs our families seem to relate in someway regardless of the disability. We watched the parents talk about how different their lives are, their fears, and how you just cannot relate unless you are in this circumstance.

A lot of it seems rather down, and like the people were just hoping for normal to much, but I guess everyone has those feelings. Regardless, I thought it was a very movie show, and it touched Mike and I It's a rather accurate description of how a person changes mentally, physically, and emotionally when caring for a special needs child. On the other hand we have also had very positive changes, but it is a difficult lifestyle. During that show Emily told me that she wanted to take care of Jude if something should happen to us {referring to when we are older}. I told her I didn't want her to take on the burden of watching Jude for the rest of her life. She said "He is not a burden he is my brother, and I love him, I want him and will fight for him". My goodness, I think she is adamant!

We then watched the Blind Side, and that move was just amazing!! I felt so sorry for the children that grow up in the circumstance that Mr. Oehr did. It made me want to rush out, and try to help all these kids. Mike always reminds me that I cannot save the world, but I wish I could. Anyway, it was an amazing story!!

Jude had therapy today at Baylor, and Emily was able to attend for the first time. All Jude wanted to do was sleep, and would have no part of participating. His seizures have also increased again, so we are watching for any impending sickness. He is still eating though very well, so that's reassuring. Still, we are going to keep a close eye on him, and keep things relaxed tonight.

I will have to let you guys know all about Christmas morning.


This was Jude today. He was to tired for therapy.

A pink chair, and a winner

It has been an extremely busy day, I have been trying to post since this morning. So I took a picture of Jude in his stander, and I have a hilarious story. I pulled up the picture to post it on the blog, and there on the TV behind Jude is a little kids butt in chaps. HAHA! I am guessing we got were watching America's Funniest Video's, or that parent movie with Steve Martin. I was rolling, and figured it wasn't appropriate for the blog. Jenn offered to crop it after she got a huge kick out of the picture herself.

I will share a picture of Jude in Kendall's recliner. He seemed to like it a lot, but he would need some straps to help hold him in place. He would also need blue vs pink, although Mike cared more about Jude having a picture made in a pink chair then Jude did.

I love the fact that we know parents with other special needs children that Jude can grow up with. I wish none of us where in this situation, but since we are, it's great to know wonderful people. I just feel bad every time I visit, I am an exhausted mess.

So on a WONDERFUL note, Emily's smile boxes participated in a contest on Facebook with Paul's Restoration Company in FT Worth http://www.facebook.com/#/pdrfortworth?ref=nf. They were picking a first, second, third, and fourth place charity to win money. I am happy to report Emily received second, and got $500!!! We are just thrilled. We will be able to make so many smile boxes with that money.

Jude was wonderful all weekend, except he was throwing a few of his tantrums. He threw one in the new stander, and kept whipping his head around. Jude still has very little head control, and I am praying that approves. We are trying everything we can to help improve this issue. Although, I think we sometimes rescue him to quickly from situations where he is aggravated, and just doesn't want to work.

A great weekend

It's been a whirlwind of a wonderful weekend. Saturday we had a million errands, but they all had a great outcome. We started by dropping off our contribution, and all the donations we took in for the family of five that needed a bit of help this Christmas. The family had their little girl with them, and she was so excited at all the wrapped gifts, and stockings. She could barely contain herself, and Mike and I got a huge kick out of her. I think it really touched Mike to help them all because she was so smiley. We then set off to find Em a great gift for Christmas, and finished that with success. That night we went to see our friends Jocalyn, Kendall, Holly, Caleigh, and the gang. It was so great to see them again, and to once again hear fabulous advice. In the world of special needs fellow moms that can share on hand experiences is a very coveted treasure.

Jocalyn, and Kendall allowed us to borrow their stander because Kendall got a new one. We tried the stander out today, but Jude would have NO part of it. I think we are going to wait until ECI gets here this week so we can make sure we are approaching the therapy equipment in the right manner. Anyway, it was so wonderful to see our friends, and see all their accomplishments. They gave us such hope for Jude. Kendall can raise her hands now when asked, holds her rattle, laughs, and gives kisses. Caleigh sits up a lot, plays with her toys, and really responds to her parents.

Jude has done well again this weekend. He has eaten about 32 ounces a day, but will not take any solids. He is getting the nutrition he needs though so we will continue to work with him on eating solids in the future. Although, the need for fluids has currently seemed to disappear. We are very grateful for that!!

The only down part of my weekend is that I had plans to see Sarah, and her baby, but due to scheduling we couldn't get together. Because Jude was so ill, I missed her daughters birth, and I feel like such a HEEL! I miss her so much at work, and I cannot wait to meet her little one. We have tenantive plans for next Saturday, and I cannot wait to see them both. I will post more tomorrow, Jude is awake, and wanting to eat again.

curly hair

I had a dream last night that Jude was crawling. Well he was crawling using one arm to drag himself, and the dream seemed to real. Maybe it's a premonition that he will be able to be mobile in the future. I remember that I was so proud he was pulling himself along.

We have a busy weekend ahead of us with preparations for Christmas. Emily is going to be very excited about her gift this year, and I cannot wait to see her face when she opens it.

I would like to share a picture of the kids from last night. Jude had just gotten out of the bath so his hair is super curly. Also, please notice how plump he is from eating so well. I guess he heard us discuss the G button, and finally decided he better eat.



Emily is leaving for her dads today for a week, and we are really going to miss her. She will be back on Tuesday, and then she will be anxious for Christmas Eve. Tomorrow Mike, and I are dropping of the gifts to the family we collected donations for. I am hoping their kids will be excited, because we have a large amount of items for them. I also had someone donate a large amount of groceries.

I am super busy at work, so I am keeping this short. Also, if you need last minute Stocking stuffers or Christmas gifts, and live near me, I have some Scentsy stuff left.

Ps ~ Mike, and Jude just stopped by work to see me. I ran out to the truck, and swung open the door and said "Hiiiiiiii Jude". He looked right at me, in my eyes, and smiled the biggest smile. Jude making direct eye contact, is an amazing thing.

Jude being a stinker

I was amazed yesterday at how many moms posted that they had been in the hospital with special needs children that had been left by their families. I appreciate all the comments, but it is a bit overwhelming. It makes me want to go to the hospitals, and rock all these abandoned babies for awhile. I still firmly believe that if the parents wouldn't treat the child right it is better that they find a family that will love them. Many kudos's to the adoptive parents of special needs children. We do what we can to provide the best life for our son. It is a challenging life though, and to take that responsibility on so willingly is to be commended.

Jude is still eating very well, and his chubby cheeks show that well. Last night my sister came by to have dinner with us. While she was there I told Jude "Show Aunt Chelle how you can put your hand in mommy's hand". I placed my hand on his belly.......and.......he looked the other direction. I said "JUDE, little stinker look at mommy". So he would glance at me, and then turn away real fast, and smile. This went on for several minutes on a repetitive basis, and we were all laughing. Jude was truly playing with me, and I think sister was rather impressed that he was being such a stinker. I was happy that he was communicating, although he never put his hand in my hand, but he made me giggle.

lyrics, and emotions

It has been rather hectic around these parts the last few days, I apologize I have not updated. Jude is doing very well, and is starting to try to communicate with us a lot more than he normally does. He is also in a wonderful mood and expresses this with lots of smiles, and giggles. In addition to this he is eating frequently, and without issue. I guess the trick was we just had to use the infant bottle, and now Jude will take 6-8 ounces at a time, without issue.

Jude had speech therapy today, and Mike took him. I braved the mall while they were at therapy because I had to grab wrapping boxes for the family we are gifting to. By the time I got done with that horrid place my Christmas spirit was all but zapped. I vowed to finish my shopping online, and marched myself back to work. After therapy Mike ran Jude by so I could see him for awhile, and he was just chattering away to me. She didn't push to much with Jude today, but they will be introducing solids again asap.

Jude has also started back with ECI, and is doing very well. They were testing how he responds to Mike's voice yesterday, and they noticed Jude will turn whichever direction Mike is talking from. This is encouraging because Jude has always favored his right side, and doesn't like to turn to the left. We have always attributed this to the stroke being worse on one side.

So last night I was listening to the TV rather than watching it because I was busy. Suddenly I realized Evita was on because I heard some music streaming through the living room. The song "You must love me" was on, and although I am not a huge fan of the musical the lyrics to the song made me a bit teary. I wondered if this was how special needs kids feel?

"Where do we go from here?
This isn't where we intended to be
We had it all
You believed in me,
I believed in you
Certainties disappear
What do we do?
For our dream to survive?
How do we keep,
all our passions alive
As we used to do?
Deep in my heart, I'm concealing
Things that I'm longing to say
Scared to confess, what I'm feeling
Frightened you'll slip away
You must love me, you must love me
You must love me
Why are you at my side?
How can I be, any use to you now?
Give me a chance, and I'll let you see how
Nothing has changed"

I know it's more geared to adults, but it's still rather fitting in some ways. While at the hospital this last visit a nurse told us a horrible fact. Many times when a child with special needs is born the parents have no clue there is anything wrong until after the birth. This happens because they don't catch something on a sonogram, the child has a stroke at birth, etc. Once these parents are given the devastating news some choose to ............. leave the baby at the hospital. The hospital then finds a home for the child. I couldn't believe it, but it's true!!! The nurse said you would be amazed how many times it actually happens. I guess if the parents cannot properly care for the child, or love them in the way they deserve, then it is best someone else cares for them anyway. It still blew me away.

A beauty queen, a wonderful eater, and a nice weekend

As promised here is a run down of our weekend. Friday Emily wanted to do a small Christmas pageant in Springtown. I arranged to leave work early, and she was so excited she could hardly stand herself. She had text me at three thirty at work asking me if I had left yet, I replied, and told her to calm down. The little girl loves softball, but she very much loves girly things too. So we packed up Jude, and packed up Em, and headed an hour away. Emily just lit up when she hit the stage, and I knew she had an amazing time. On the way home she said "Mommy thank you for driving me so far, and for making this happen for me". Argh, my heart just melted because she finally got to do something that she really wanted to do, and just for her. Here are some pictures, my camera is a bit shotty right now so forgive the quality.



Oh, did I mention she won? Yep, the whole thing!!!


I think she was rather excited because once we got home I found about 6 shots of the below pose on the camera, she was snapping pictures in the back of the car. I think she would have worn the tiara to bed if I had let her. In addition to Emily having a fabulous time, Jude also ate and are while we were at the function.



As mentioned before, Saturday we decided to have family day, and to get out and do something in the Christmas spirit. Therefore, we decided to take the kids to see Santa..........at the mall.........REALLY? So we drove up, and I was immediately annoyed with the amount of people flowing throughout the parking lots. We drove around for fifteen minutes, and couldn't find any parking, and Mike was laughing at my frustration. I looked at him and said "Let's just GO, let's find something else to do", and he replied "Aw honey did the mall suck out all your ho ho ho's and candy canes?". After I died laughing we then settled on walking through the Gaylord Texan hotel, and what a fabulous idea that was!!! They have a plethora of free events in the hotel, and it's decorated to the nines. We spent several hours just looking at everything, and the only money we spent was on lunch. Jude was fascinated with all the lights, and Emily seemed to have a good time too. Also, Jude ate like a champ while we were there, and ending up eating 32 ounces on Saturday!!






On Saturday night when we got home from the hotel I learned that one of my readers, and a friend was not going to have a normal Christmas. I had posted about her this weekend, and so Em and I planned to get up Sunday and go shop for them. I woke up with a killer headache, and neck ache, but we still packed up our stuff and went. Emily and I had decided that since we just made a large amount of Smile Boxes, we would use the rest of the money to provide Christmas for a needy family. When we got back from the store we wrapped up all the gifts, labeled them from Santa, and made stockings too. We stuffed the bag full of the gifts, but still needed another bag to house some more.



So the living room has gifts for the family with five children, and the dining room has smile boxes. I am hoping Em sees the true meaning of Christmas in our two rooms.



I am very thankful that Jude is eating so well, and I hope that this is the new trend.


Ps. Don't forget to visit Emily's Blog. She said she is trying to help the siblings of special needs kids. http://lifefromakidspointofview.blogspot.com/

Help a family.......or two

We had an incredible weekend, and Jude is doing very well. I will post all our details tomorrow, but until then I had something to ask everyone. This weekend I learned that one of my avid readers is having a very difficult time, financially. Not only did the mom lose her job, but the dad has lost his job too, thanks to our fabulous economy. There isn't much left for Christmas since it takes everything they have just to survive.. I posted a plea on facebook for some donations, and stated Emily's Smile Boxes will try to help this family out. So far we have been able to get them several items. Emily, and I sat tonight wrapping what we were able to purchase, and labeled it all "from Santa".

Although, while posting my plea I learned of several other families who are in the same predicament. It breaks my heart to think that a child will not have a present to open on Christmas. Therefore, Emily's Smile Boxes if pledging to help as many families as possible this Christmas. If you would like to help us you can paypal whatever you can afford to emilyssmileboxes@yahoo.com. Keep in mind that it is tax deductible, and anything helps, even a $1.

Our life may be difficult, and struggling between wanting to be at home and work is hard, but in the end I am so thankful for my job. I know I post a lot here about charity, but helping others, helps our hearts. Thanks to everyone that can spare a little bit. I will post pictures of our endeavors so you can share in the joy of your donations.

Good news.

Jude has done amazing today!! He got up about 9:30 and took 8 ounces for me without any issues. We then decided to go walk around the Gaylord hotel, and while there Jude took another 8 ounces. The hotel was decorated amazingly, and the wonderful part is they provide all these magnificent sites for free. We strolled through the hotel taking in all the breathtaking lights, trees, trains, and more. We then stopped for Lunch and just enjoyed some family time.

We made a few more stops, and then we headed home. Once at home Jude again took.......another 8 ounces. He seems to really cuddle up to me, and Mike said he thinks Jude i just going through a "mommy phase". I am very proud of his eating today, and he was also very interested in all the bright lights at the hotel. We received many many stares, but it didn't seem to bother us much.

Emily was a bit resistant to the family day, and kept asking to include friends. I really believe she is hitting puberty, and Lordy help me.

I just wanted to share the news that Jude has been amazing today!!!! I am going to keep this short because it seems a day out just exhausts me now. Oh and a funny story.......when we went out today our original plan was to go to the mall. We pulled up, and parking was SUCH a nightmare that I was very annoyed. I told Mike to just "GO", and he looked at me and said "Aw honey did the mall suck out all your ho ho ho's and candy canes".

EAT!!!

Yesterday was a very difficult day! Mike called me about noon in tears because Jude was not eating again. He was so frustrated that there was no calming him down in any form or fashion. I explained to him that his stress was probably relating to the fact that Jude wouldn't eat, but again, nothing would calm him down. He just melted and even went so far as to wonder if we made the right decision in having Jude. It's natural, he just broke, and he has a right to. I am so limited as to what I can do from work, but I hopped on the phone and called my cousin who is just a few minutes away, and she agreed to go over and help.

She said she sat there for an hour trying to feed Jude, but he would just scream at her, and refuse to eat. She said that she could see why Mike gets so frustrated, and that after forty five minutes she was ready to pull her hair out. She was wonderful though, and talked to Mike for awhile. I really think she helped calm him down, and I then counted the hours to go home, and help Mike. Once I walked in I cooked dinner quickly, and then took Jude. I had stopped at the store and gotten Jude some of the pre-mixed Similac bottles he liked, and I put one of the smaller nipples on the bottle. He ended up drinking the whole 8 ounces, and then he took 2 more when I gave him his medication. So in all he had about 20 ounces yesterday which is fine, but not enough. We have made the decision to get the G button, but I am trying to hold out until after the holidays.

After Jude took his last two ounces we all three went to bed. Jude was a bit fussy so I put him in bed with us, and woke up about 1am with him still in bed with us just snoozing away. I put him in his playpen, and he was still sleeping when I left this morning. So at least his schedule is getting back to normal. I just hope the G button will relieve some of Mike's stress. I feel at such a loss that I am at work and cannot care for both of them while I am here. I want to put my hair out at times!

On a good note, Jude was "talking" up a storm again last night while he was laying in bed with us, it was very cute.

A few little updates

Last night was wonderful, because Jude finally slept! I kept him downstairs holding him tight while Emily, and I watched the season finale of "Glee". Emily has labeled watching Glee our "Mommy and Emily time", which makes me smile. We both love that show, and I highly recommend it. They even did an episode on how difficult it is to be in a wheelchair, and I thought it was fabulous. The teacher was rather dissapointed with his children that could walk having no regard for the special needs kids feelings. So he made every walking child spend a certain amount of the day in a wheelchair so they could see how difficult it is. Anyway, I held Jude all through the show, and got him to eat which made me happy. He had given Mike a hard time all day about eating, but I really believe it's because of the bottle. For some reason Jude wants the new nipples that come from the hospital when a baby is first born. It takes him a little longer to eat, but not much longer. If you give him a bottle with one of those nipples he will eat the entire thing. I think Mike is rather frustrated with it, but I believe doing whatever it takes right now to get him to eat.



Next week Jude will start back to speech therapy, and the therapist will begin working with him to eat solids again. He will also stop his Flagyl tomorrow so we are getting back to a normal lifestyle again. Well as normal as our lifestyle gets I guess. Jude looks healthy and pink again, and seems to be noticing situations around him. Last night I was hollaring upstairs for Emily to come down, I would say "Emmmmmmmmily??". Jude would say "aaaaaaaaaaaaaa" and I was rather impressed with this. It's almost like he was trying to mimic me, he only did it twice, but I was still very happy. In addition I opened my hand palm up on his belly, like I always do, and he placed his little fist right in it. Generally I will say "where is Jude's hand", but he performed this task without being asked.

Prior to watching Glee we watched a rerun of Extreme Home Makeover. I love that show so much that I record every new, and old episode. I watch this show to see others doing good deeds, to remind myself our life isn't that bad, and to teach Emily lessons. Last night there was an episode on with a little boy that has a trach, feeding tube, etc. Mike was pretty upset seeing this little boy, and told me watching that show just doesn't make him feel better. He said he sees the special needs equipment, and realizes that Jude will someday need all those items too. I told him I look at the show with hope because if that little boy can accomplish holding HIS head up, and driving his own wheelchair, then I believe Jude can too!!! I also see the hope, and the dedication his parents have, and it touches my heart.

On a final note I am placing a Scentsy order today, so if anyone needs anything for Christmas please let me know. Thanks.

T'was the night before Christmas ~ Insurance style

Since my blog has been laced with stressful moments lately, I thought I would share a funny. There is a handful of people I know that will find this post very funny! I have been in the insurance industry since 1992, and trust me this funny below is pretty accurate. I catch myself looking at potential hazards wherever I go.

T'was the Night Before Christmas ~ Insurance Style:

T'was the night before Christmas (12:01 A.M. EST 12/25/2008) and all through the house (single family, masonry veneer, 1 1/2 story with basement, 1128 ground floor sq. ft., territory 68, PC 1) Not a creature was stirring, not even a mouse (due to good upkeep of residence.) The stockings were hung by the chimney (contractor installed??) with care in hopes that St. Nicholas would soon be there (in spite of dead-boltlocks and ADT central station alarm system, certificate on file.) The children (ages 4,8,14 & 16) were all nestled snug in their beds (check
MVR on 16 year old - possible undisclosed driver) While visions of sugar
plums danced in their heads. Mama in her kerchief (scheduled heirloom?)and I in my cap had just settled down for a long winters nap (check employment - is insured sleeping all day?) When out on the lawn there arose such a clatter (check into condition of premises, housekeeping etc), I jumped out of bed to see what was the matter. Away to the window I flew like a flash, threw back the curtains
and tore open the sash (intentional destructive act - no coverage.) What to my wondrous eyes should appear but a miniature sleigh and 8 tiny
reindeer (check if sleigh rated business use and corporate owned). Witha little old driver, so lively and quick, I knew in a moment it must be
St. Nick (order medical on 600 year old driver). More rapid than eagles (check MVR for speeding violations) his coursers they came, and he whistled and shouted and called them by name (possible aggressive driver?): Now Dasher, now Dancer, now Prancer, now Vixen, OnComet, on Cupid, on Donner, and Blitzen (possible DUI?) To the top ofthe porch (enclosed or open?) to the top of the wall (check forstructural damage), Now dash away, dash away, dash away all. So up to the house-top the coursers they flew, with the sleigh full of toys and
St. Nicholas too (check for possible retail delivery classification ofautos).
And then, in a twinkling, I heard on the roof the prancing and pawing ofeach little hoof (check for shingle/roof damage). As I drew in my head and was turning around, down the chimney St. Nicholas came with a bound.He was dressed all in fur (scheduled item?) from his head to his foot and his clothes were all tarnished with ashes and soot (when was chimney
last cleaned?). A bundle of toys he had flung on his back, And he looked like a peddler just opening his pack. His eyes how they twinkled, His dimples how merry, His cheeks were like roses, His nose like cherry (order updated medical report, possible alcohol abuse). The stump of a pipe he held tight in his teeth (note -not eligible for non-smokers discount) And the smoke it encircled his head like a wreath (check batteries in smoke alarms to make sure operational).
He was chubby and plump, a right jolly old elf, And I laughed when I saw him in spite of myself. A wink of his eye and a twist of his head, soon gave me to know I had nothing to dread (home invasion,stranger enters past alarm and insured not worried? Possible moral risk). He spoke not a word, but went straight to his work, and filled all the stockings then turned with a jerk. And laying his finger side of his nose, And giving a nod, up the chimney he rose. He sprang to his sleigh, to his team gave a whistle, and away they all flew like the down of a thistle. But I heard him exclaim as he drove out of sight, "Happy Christmas to all, and to all a good night!" (Check hours of operation, 24hr service operations prohibited. Also check into seasonal nature of business and limits of liability).

Jude is still doing better, but he is still up until 2am. We have to give him the Flagyl every six hours so he may be anticipating the medication. We hope that he gets back to his regular scheduled programming soon!!

Smiles again, and we are not perfect

Jude is really looking so much better, and he and Emily are hugging again.

It warms my heart to see them together, I know Em has missed her brother. Although, she is getting a bit reluctant regarding watching him while I cook. She doesn't really complain she just mopes a bit.

So Mike, and I got in a bit of a tiff last night, and I always hate when that happens. Everyone always tells us they think it's amazing that we raise Jude, work, etc. We just do what we need to for our kids, and you would do the same. Although, sometimes we are at each other's throats due to the stress of the day regardless of whether we are working, or at home. Mike has Jude all day, and wants a break when I get home. I have been at work all day, and I just want to chill out for a bit after holding Jude for awhile. It's the age old debate on everyone needs some relax time, and there is little time to relax. Also, getting Emily to after hours appointments or extra curricular activities can sometimes prove stressful, because that again leaves Mike alone.

Anyway, we always work through it, but we aren't as perfect as some people think we are ;).

Have a good day.

A touching Christmas story

So I really worked with Jude on eating this weekend, and getting back to his regular schedule. We were becoming exhausted because Jude's nights and days were mixed up. I was thrilled when Jude looked so wonderful on Saturday, all nice a pink. If you compare this picture to the pic of him in the hospital you can tell how sick he was.

Finally on Saturday I got Jude to take almost 30 ounces, and we felt relieved. We even had a sitter stop by for two hours so Mike, and I could run out and have some dinner, and time to talk. It was nice to get out for a little while. When we got home Jude laid down about 10:30, and he slept ALL night long. Wow, I felt like a new person in the morning, and many praises to my husband who gave Jude his medication at 2am so I could sleep. Jude went right back to sleep after Mike gave him his meds. Sunday was a great day too, but then Jude decided to stay up again until 1am, sigh!!!

I had shared on my blog how Jude was in the hospital the exact same time last year, and how we never got our Christmas lights up. When we got home from hearing that Jude would be permanently disabled we were all to depressed to even think about Christmas. So then this year Jude winds up in the hospital again, and for awhile it looked like he might not be with us at all the Christmas. We were stressed, upset, and praying that he would be ok. The Christmas lights for our house were strewn across our Dining room table in a mess of tangles and cords. Mike muttered at the hospital about how Christmas wasn't going to happen again this year, but he soon found his way over that issue. He was determined, and so was I that it would be an exceptional holiday. Imagine our surprise when we pulled up to our house yesterday to see this...

That's right, we have great friends, and family. My cousin Sarah had sent out an emailing asking if anyone wanted to help put our Christmas lights up as a surprise. Not only did they get help, but my best friend Ginger's husband owns a company that puts up lights. They put custom lights with timers, and everything on our house. Emily was, for the first time in her life,.....speechless. It was like the Extreme Home makeover of Christmas lights, and it was very touching!!! It really put us in the holiday mood, and we consider ourselves very lucky to have such wonderful people in our lives. Many times we go about our business, but we cannot help letting all these issue effect us, so something like this really raises our spirits!

Also, I would like to show you that Jude is back to his old self, and has nothing wrong with his lungs..........at all.

He was very angry with me for giving him his grape medicine. Emily thought it was hilarious he was carrying on without a tear so she snapped a picture.

Ps ~ A big thanks to auntie Fleck for all her Christmas goodies for the kids, and us. You truly are a blessing in our lives! We love you dearly.

Jude looks better

As of 1:30 Jude has taken 16 ounces so far today, he looks more like himself, and he just wants mommy to hold him. Although, I am catching a quick break while he is in his crib making his barnyard toy go off repetitively. I keep hearing "moooo", "cheep cheep", etc. I am so happy to see Jude looking better, and I have some hope that our Christmas may be alright after all.

Before we took Jude to the hospital I was holding Jude in the bath, and he was just so pale, and limp. I was so worried about him, so it's so great to see him pink, and smiley. The antibiotics seem to be working, and I pray they will continue to work. Even tho we will probably travel down the road of a G tube I am glad we held off for a bit. Jude does not aspirate, and even tho it's hard to give him his medications, I hate to see him go through surgery right now. I am also so thankful that Jude is no longer attached to wires, machines, and more, and I can hold him any time I want to. According to every doctor we have seen now this fully establishes Jude as a true fighter, and in my mind there is no telling what he will accomplish.

Last night I finished wrapping the Christmas gifts I had purchased so far, and then Jude and I admired our tree. I shopped on my lunch yesterday to get the said Christmas gifts, and I have to admit I was a bit jealous when I saw all the toys for Jude's age. I got him Elmo Tickle hands, and a giant caterpillar to lay on because he cannot use the other toys. I am thankful he is with us so I feel ashamed I was jealous, but I do wish he could play with them. Maybe someday he will!!

While Jude was at his sickest this past week I had someone in a nice way ask me if it might be better for him, and for us that Jude...............well..............not make it. I know that sounds shocking, but she didn't ask in a mean way, it was just natural curiosity. I can firmly answer that would be a definitive NO, Jude is our son, and our family, and we want him with us as long as possible. If he were suffering my mind might be different, but he isn't, and I think he is making great strides. I am still SO encouraged that Jude's EEG showed actual improvement, and great improvement. I really hope he will continue to succeed.

Speaking of Christmas we are debating...............debating getting the one Christmas gift Em has asked for for YEARS. If you know me you know what I am talking about, but I don't want to make our lives anymore complicated. I have held off for a really long time, and I may again this year. I am debating tho.........which is the closest I have ever been to saying "yes". Em deserves a good Christmas, but I do have to take everything into consideration.

Friday!!!

Mike went to the doctor with Jude today, but they didn't say to much. He said that Jude was not dehydrated again yet, and that if we did go back to the hospital they would push a G button. They discussed Jude's vaccinations which have always been a debate with us, and they confirmed Jude had the rotavirus vaccine. We all now know that Jude had the rotavirus, and the CDIF. In fact Jude's pediatrician asked Mike, "Are you sure he had both issues?", and Mike said we had the stool and blood tests to prove it. The doctor said "Da%%, he is a really lucky kid, and a fighter!". In other words, he couldn't believe that Jude had made it through this past week. I think it was a slap in the face to us, that Jude was beyond sick.

After the doctor's office Mike brought Jude by my office letting me know he had only eaten 2 ounces that day. I took Jude, and placed him close to me, and he took another 4 ounces, and Mike then proclaimed he needed boobs so he could have pillows for Jude too...ha! I was super busy at work so Mike quickly took Jude home, and I was happy to follow a few hours later. Once I got home Jude was sound asleep, and stayed that way for about two hours. I am afraid it is going to be another long night tonight. Once Jude woke up I worked with him, and I am happy to report he took NINE ounces. I am afraid after that he had a bad diaper, but 9 ounces is still incredible.

I have wrapped some Christmas gifts tonight, and spent some time with my family. Em is at a friends, but the rest of us are here watching Extreme Home makeover recordings. We are looking around very thankful for our home, and so thankful for our kids. We plan on having a relaxful weekend filled with prayers that Jude will stay home, and not go back to the hospital. I also plan to see a few wonderful friends, and family members who have supported us without fail.

I apologize I have not kept up with everyone's blogs lately, I have just been a bit overwhelmed. I promise to be an avid reader very soon!!!

quick update

Sorry, it's been a busy morning at work, and I have been unable to update. Yesterday we had begged the doctor to let Jude go home because he was beginning to eat. The hospital environment is not conducive to feeding Jude, and we wanted to try our own house. We promised that if we went home and he began not eating again that we would bring him back immediately. We also agreed that if we brought him back Jude would receive the G button. One of the reasons we wanted to take him home is because Jude had wiggled his IV loose. Little did the staff know the fluid had been seeping into Jude's skin on his foot so it was very swollen. They unwrapped his foot, and I was very hesitant about them placing another IV at the time. It's a traumatic experience for all of us, and I didn't want Jude to go through it again if it wasn't necessary.

Luckily the Doctor let us go, and just in time for me to race home. Once at home I had to throw my stuff in the car, and head to work with Scentsy. I was exhausted at this point because I had gotten about two hours of sleep the night before. Mike stayed home with Jude, and they went to fill his plethora of medications. I went through the party as quickly, but as professionally as I could. I have to thank Em for going with me to help me out last night. On my way home I called Mike who told me the nightmare experience he had getting Jude's medications filled. Let's just say we aren't very happy with Walgreens right now for waiting HOURS to tell us they didn't have the medications in stock. I even asked the lady to call me asap if they had issues, but NOPE! So Mike had to drive all the way to Euless to a compound pharmacy to get Jude's antibiotic. He then drove home only to fight Jude on receiving the medications.

When I got home Jude was more clam but red from crying a lot. I took him, and calmed him down on the couch. He seemed to be happy that he was back in "his" spot on the couch, and I was able to feed him four ounces. Emily had gone to bed, and then Jude and I took a bath, because trust me the boy needed one. By the time we got done with everything it was near midnight, and I was spent. Jude, and I laid down in the bed together, but he would have no part of sleeping. He is like a newborn right now because his night, and days are mixed up. Mike could tell I wasn't going to make it so he took Jude upstairs for awhile. When Mike came back at 2:30, I woke up and told him it seemed he was only gone for 5 minutes. Luckily Jude slept soundly until my alarm went off at seven.

Today Jude wants to sleep, and not eat because his nights are mixed up. He does have a doctor appointment at 1:30, and I will fill everyone in

A night of unrest, but hope

Jude would not go to sleep last night. I was up with him crying, and crying, so I asked for some Motrin, and Jude finally fell asleep at 2am. He then woke back up at 4am, but quickly went back to sleep. So it's been a night with little rest again, but I was able to get 5 ounces into Jude last night. Then this morning Jude woke up, and took another 6 ounces of Similac. I was so excited that I paged the nurse to tell her. I am really hoping they will let Jude go home.

I fully expect that Jude will continue to have some feeding issues at home. I think Mike and I are leaning towards the G button, but we want to go home to rest before Jude has this done. I am so thankful Jude is eating, and he has been so smiley with me. In fact the nurse last night said she thinks Jude just needed his momma for a night. Mike is an INCREDIBLE dad, but I think he was more tired than he realized. I am so glad he went home, and got some sleep. I am so anxious for us all the be back home, but we also want Jude well before we go back too.

Resident of room 676 checking in.

I am at the hospital watching Jude rest, and he keeps making little noises like he is talking in his sleep. The GI doctor came, and evaluated Jude today, and discussed the non eating issue with Mike. Mike said the doctor was very nice, and told him no one will pressure us into making any decisions regarding the G button ( unless Jude continues to refuse to eat). He said we should take our time, evaluate the situation, and then decide. He explained that the button will allow us to feed Jude, and administer medication without fighting Jude. Jude hates receiving medication, and every nurse here has commented on how strong he is when he throws his anti medication fit. He will hold his breath, and contort his body in all directions screaming in between the breath holding.

I know a few people that have had issues with the G button getting infected, also the idea of Jude being put under for surgery scares me. Although, the idea of Jude never getting dehydrated, and Mike's stress level going down regarding the feeds, is appealing. There are many pros and cons we have to scan through. Although, if Jude doesn't eat we will have no choice. When I got to the hospital Jude had only taken an ounce more, so we are stuck here. I keep telling Jude if he will eat we can go home to our cozy bed, but he is not interested. I hear the nurses talking about how the infection, and virus could keep him from eating, but I think this is just Jude being Jude.

Mike said Jude had carol singers today, a musical therapist, and others stop by his room. I am glad he is getting some interaction. I held Jude in the rocking chair for awhile tonight like I normally hold him on the couch. He seemed to be very happy that I was holding him, and fell fast asleep. Now according to Mike Jude will be up here in awhile, and stay up until 2am, so I better get to sleep. Good night all.

Also, a friend of mine lost his wife today, and needs some prayers. I am not sure why things happen sometimes in life, it's just a mystery.

Thank you

Mike called this morning, and said Jude slept very soundly last night. His fever is hovering between 99.4 - 100, so it isn't that bad. He also had two other nasty diapers, and we are hoping this goes away soon. I was able to get the 2 1/2 ounces in him I mentioned, and then Mike said he got an additional 3 ounces of pediasure into Jude. It still isn't much, and there is no way they are going to let him go home. Mike also said Jude is acting very sleepy again today, and will not eat because he just wants to sleep. The nurses are assuring Mike this is normal, but I am worrying Jude is slipping back to the way he was. I am wondering if this is because they turned down the IV, and he is not eating enough. I am anxious to get to the hospital to see him. I think a lot of my worrying is because I am away from him, and living through text updates from Mike.

I am going to stay with Jude tonight, and through tomorrow afternoon. I am also going to take Em with me to the hospital tonight so she can see him. We are lucky that Jude is in a nice big room, and there is plenty of room for us to move around. Also, child life is wanting to meet Em, and talk to her about her boxes. I am not sure anyone will be there when Em gets there, but we will see.

In addition I would like to thank everyone from the bottom of my heart for all your advice, comments, and concern. I know I don't respond back all the time, but just know you are appreciated. I have also had a few people offer to get Jude the little aquarium toy I mentioned, but someone already got it. I appreciate the offers, you are very kind. I have a hard time accepting things from people, and my aunt told me once to just be gracious, because it helps others feel better. However we are doing okay this holiday season, we still have a lot of medical bills, but shoot who doesn't, so trust me we are fine. If you would like to help Jude it would make us very happy if you adopted an angel in his name. You can go here: http://angel.jcpenney.com/, and complete everything online.
you can also donate to Emily's Smile Boxes, and emilyssmileboxes@yahoo.com.

We feel very blessed we have so many people concerned about Jude, and who are wanting him to come home. We cannot wait to have him home trust me!!



Ps. Mike just called and said Jude is awake, and active. He is not eating, but is awake.

So tired, I apologize if I ramble....

I have often wondered how parents that have children with serious illnesses that require constant hospitalization cope. I still wonder that, because despite the "your strong' emails I receive from others, I admit am not strong when it comes to my family being split apart. I have a tendency to stay up late, and try to work out my emotions. Although, I do have to say that I am beginning to adapt to working, then driving to Dallas, and then going home. I guess that's a good sign since it's only been 4 days. So I guess you just learn to adapt?? We haven't even approached the amount of days many of our friends have toughed through like Zoey's mom, and Kendall's mom. This situation has reminded my heart that many families with seriously ill children need our thoughts, and prayers....... always. When we go about our normal lives, someone could always use our prayers.

I have been working through lunch so I can leave my job at 4:30 to go tend to Jude, and Mike. My boss, and ever faithful Jennifer have been amazing with accommodating my schedule. Today I sent a sob email to Jenn, and Tim that I just wasn't going to be able to hold out without taking a day off to relieve Mike. They were both very understanding, and I plan to spend tomorrow night with Jude, and take Thursday off. I am lucky I have a good job, with good pay, and understanding people.

Once I got to Jude tonight he was sleeping, but he quickly woke up when I started talking to Mike. I ran over and ....... said...

Me: Hi my baby, hi my big boy
Jude: {BIG SMILES}
Me: How are you darling? Are you feeling better?? You want mommy to hold you?
Jude: {Pterodactyl squeal} smiles!!!

Jude then started arching his back like he wanted me to pick him up, and I did. Mike unhooked Jude's heart monitor, and respiratory monitor so I could hold him close. I got the biggest smiles ever, and lots of coo's!! I was so so happy, and so was Jude. He seemed just like little Jude tonight with his inner light shining bright, and I took in his baby smell. Mike is so good about making sure all Jude's connected wires are in their right place. He is such an amazing father, and you would melt if you saw him with Jude.

I knew Mike needed to eat, and I was very hungry. So Mike, and I then when to grab a tray from the cafeteria, but when we got back poor Jude was so upset. He hates it when we leave the room, so we rarely leave him alone with the nurses. While I was visiting, I was able to get 2 1/2 ounces of formula down Jude, but that only equates to 3 ounces for the day. We are going to ask the nurses to further cut back the IV to see if Jude can increase his food back to 24 ounces a day of pediasure he was taking. If he doesn't, we are starting to consider the G button. I appreciate everyone's advice on the matter, and our main concern has been the increased infection exposure.

After the formula, Jude then had another nasty diaper, which isn't a good sign. One of the reasons they want him to eat is to see if his pancreas can handle the food. I then spent time looking at Mike's tired face, and patting Jude, but soon I had to go. I was reluctant to go, but I kept that to myself, and my faithful husband walked me to my car. When I left I made some calls on my way home, and then grabbed Emmy. Oh my Em, ever faithful to her amazing spirit has been the best child during this entire circumstance. I swear I need to take her on a mommy and Emmy vacation when this is done, and hopefully Jude is home safe and sound while we are out.

Once I was at home I chatted away with my cousin/ aka should be sister, and when I hung up I received a text from Mike, "Jude has a fever" DAMMIT! Excuse my language. Turns out the fever was at 100 which doesn't sound like much, but Jude's temp is like mine always around 97.4. I rarely run a fever, and when I do, Lord knows I am SICK. It means he is fighting his infection, but with the level of antibiotic he has received, it leaves me rather perplexed. So I am again down on my knees praying tonight that they find the final result to resolve these issues. I think I am more worried regarding the fever, but I have had a sick feeling about all of this.

Since my life has been rather laced with negative issues lately I thought I would share some positive aspects of Jude's case I saw tonight.

1. He looked directly at me when I picked him up
2. He recognized my voice
3. He lurched forward to be picked up
4. He acted like he hugged me
5. He smiled, and giggled
6. He seemed pre-occupied with the beeping noise the monitors put off when sounding alarms
7. He "watched" tv which is what distracted him to eat
8. He knew when we weren't there.
9. When I said 'Jude where is sissy? Do you miss sissy?" he scanned the room twice like he was looking for her.

In my eyes these are positive things. In my heart many things are different than they used to be prior to having a special needs child. Honestly, it's not just my heart it's many people's hearts. Even though Jude doesn't speak I feel like he has screamed out to many of my friends, family, and even those who do not personally know him to help others. Since Jude has been diagnosed our mission has been to help help him the best we can, and help other children too. Jude has inspired so many to help others, and that's an amazing accomplishment. Honestly, both my kids have been pretty inspiring, and that makes me so very proud.

While at the hospital I chatted with Mike. I told him our entire neighborhood looks filled with Christmas lights. He looked at me and muttered issues regarding Christmas, but I knew what he meant. . Last December Jude was diagnosed, and our world was shattered. No Christmas lights went up last year, and our lives seemed so sad, but I was determined to bring happiness in on Christmas, and I think I succeeded. So here we are again, with Christmas lights for the house strung all over my dining room, but they will not be hung. This is not sad to us, because they are just possessions, but when Mike said he wished the holidays would just go away, I corrected him. We will have an amazing Christmas, and Jude will be with us. I have worked extra hard for extra Christmas money, and it will be amazing. I even got Jude a giant fuzzy Caterpillar so he has to be home, and okay. He will love his big stuffed animal, and we will love Jude being there. He might also just have to have one of those great aquariums that he loves so much hanging from his crib in the hospital. I doubt Jude will be home before the weekend, but I will be thankful if he is.

Mike told the child life coordinator today that we ordered more items for the smile boxes, and we will deliver them soon. Mike said she is very excited, because they have a lot of kids checked in. Ugh, I hate to hear that, but we will try our best to cheer them up a bit, and their siblings too.