Happily Ever After

Last night we watched the movie the "Proposal", which was fabulous. While watching it though I realized that from young children on we are fed the fairytale story of happily ever after through books, and the media. I believe this gets embedded in our brains, and when things don't go as planned it's a huge let down. So I guess we all have our ever after it's what you do and how you live that adds in the "happily".

A glimpse of my happily last night is shown below. Em tried on her Halloween costume, and then after Jude's bath Mike styled his hair "fifties", so we would know what to do on Saturday, and so he will match Emily in her fifties costume. These are pictures of Mike and Em helping Jude out, and Saturday I will post the entire "do".

Some sound advice.

I feel a bit better today, I am over myself. I decided to set myself some goals to move forward with my life. I want to make sure I involve Jude more in everyday acitvities, and have "conversations" with him. I want to make sure that I start working out again on a regular basis because it always makes me feel better. I also am going to cut myself some slack by allowing myself to get upset, and to admit I cannot do everything. I want to make more alone time with my husband, and I will achieve this somehow. I also want to find a plastic surgeon that will pro bono help me with the mess up the other doctor created, but that's more wishful thinking than a goal, but I figured it would provide humor.

As I was sitting here contemplating what to write today my good friend Linda sent me the Dear Abby for today. I sat reading it smiling and I thought it very much hit the nail on the head regarding my emotional stress lately. My friend Fleck yesterday told me if I would like to come camp out in her trailer to regain my sanity I can. I replied in text saying "Oh no I have lost it, haven't I?". I giggled when I sent her the text, and I am sure she giggled when she got it. She said I was bound to lose it eventually, which made me feel better. Anyway, I would like to post the excerpt of Dear Abby on my blog so you can see what I read today.

"DEAR ABBY: On Aug. 10 you printed a letter from an aunt who was upset because her sister, the mother of a child with autism, doesn't have time to join in fundraising with her and the rest of the family. While I commend the writer and her family for raising money for autism research, that woman needs to cut her sister some slack.Very few parents (thank goodness for them, though) have the emotional energy, not to mention time, to advocate for their child's special needs. I commend you for giving the writer of that letter the answer you did. I would challenge anyone who thinks he or she could "handle it" to walk a mile in our shoes. Our entire lives center around our children and their doctors' appointments, therapy, special schooling, adaptive equipment, etc. The last thing we need to hear is some self-righteous know-it-all putting us down for something we were hand-picked by God to do. -- SPECIAL-NEEDS MOM IN ALABAMA

DEAR MOM: I heard from the parents of many special-needs children who echoed your sentiments. And you're right -- it does take a very special parent not to crack under the stress. Read on:

DEAR ABBY: I am the mother of two boys with special needs who are around his age, and I can assure you, that woman is already "very involved" in a way her sister cannot even begin to imagine. It is a labor of love that requires intense attention to their every action and potential need.Perhaps "Raising Money" should spend an entire day being the primary caregiver for her nephew while trying to complete household responsibilities or work. I cannot tell you the number of times I have cried in my car out of sheer fatigue (I now carry tissue in the glove box). The most charitable thing this aunt could do is to show up on her sister's doorstep with dinner, an offer to do the laundry, and a long, comforting hug. -- CINDY IN AUSTIN, TEXAS

DEAR CINDY: No one fully understands what a parent with a child with a disability goes through from day one. First there is the emotional aspect. We grieve. It's not the kind of grieving you do after a death. This is grieving that never ends. It cycles over and over. If you're not crying, you're angry. Some days you can accept and breathe; other days you just can't. Anything can set you back, and suddenly you're sobbing again. Not only is there the day-to-day caring for the child -- feeding, dressing, hygiene, to name a few -- but also phone calls, meetings, doctor visits, therapies. When the kids are little, many of these things aren't too bad. But as they get older, larger, stronger, it breaks the caregiver's body and spirit. There is also the problem of not being able to get needed services. In many states, once children are out of the school system and on the waiting list for adult services, they sit and languish at home with NO services until they qualify for accommodations. In some states that can be many years. And there's no portability of services between states, so if you must relocate, you go to the bottom of that state's waiting list. Living with that, we often can't get or hold jobs. Day care is a huge problem for us and our kids. If that woman really wants to help, she should offer respite care and get involved with the waiting list issue, which is as important as research. -- SONJA IN COLORADO

DEAR SONJA: In this time of draconian cutbacks everywhere, I hope our politicians will direct their thinking away from divisive politics and being re-elected to what must be done to help our most vulnerable citizens."

Mmmm, I don't need to type anything after that do I. Pretty much sums it up. I will close with some great pictures. Last night Jude wouldn't go to sleep, but once I placed him between my nice fluffy pillows he couldn't resist. Also, we go all out every year for Halloween, and I have some pictures of Mike, and Em creating the start to our haunted cemetery that is now in place in our yard.

Better

I feel a bit better tonight, I am sorry for the whoa as me session. Jude has been super cute tonight, and I have gotten some rest. I am truly going to look into a vacation in 2010 that consists of nothing, but me and my family. No computers, no phones, no mail, no bills, just us. Just ............ US!

Eeyore, may I borrow your cloud?

I am in a funk! I am and it's not like me, I need to get out of it. I am normally pretty upbeat, and try to see the good side of everything in life. As I have stated before my husband has nicknamed me Snow White, because I try to see the good in everything. Lately I feel more like Eeyore! I am just tired I think. I feel like I get up every single day go to work, come home and work, and fall into bed with little or no time for anything else. I get to see my kids for about two hours, and that's it. Then when I when realize I am being mopey I feel bad because I am one of the lucky ones that has a great job right now. I really want a vacation, and I am TIRED of not having any money. I miss shopping, I miss going out to dinner, I miss movies, I miss dressing up, I just miss a lot, and am just whiney OK? Just grrrrrr. I am thankful for my life, for Jude, and for everything around me, but I am in a funk, and I need to get out of it.

Jude did well again last night, and is such a little joy to be around lately. He is smiley, and really tries to communicate. He kept pushing up on his arms again, and looking around. His head would fall, but he still made an attempt to locate the person he was looking for. Jude also got a crawler from ECI, but it's a strange contraption that is a bit difficult to use. The only time I put him in it I nearly choked the poor fellow so I have not tried since. It's nice though, and it came with a cute Disney tray that I have been using with his yellow chair. Jude still has very little control over his hands, but if you place an object between his fingers he will try to maneuver it to his mouth. I hope someday he will lean to use his arms a bit more. Mike told me he did grab his foot this morning, and was laughing. I wish I could have seen him, but I was thrilled to hear this. Also, Jude has discovered his boy parts, boys will be boys, I swear! I am glad he has discovered them though because there is thought process there. I guess it's equivalent to Mike saying he didn't even care if Jude cursed as long as he talked eventually.

So does anyone watch Oprah? I TIVO her, and watch her show every night. Last night they had a show about mothers who drink, and then drive children around. This prompted me to have a long talk with Emily last night about being able to stand up to adults in necessary situations. I explained that I may have wine at home, but I never would drive afterwards, and she should expect the same from all adults. I told her to never be afraid to call mommy to come get her if she felt uncomfortable riding with someone. I was then intently watching the story regarding the recent tragedy in New York where the mother had been drinking and smoking pot, and hit another car head on. The whole story sounded strange though, and made me question what happened. I am sure if the toxicology reports stated she was drunk, and high than I am sure she was, and what a SHAME. Although she had left on an hour and a half drive back home, and had been seen at a McDonalds, and a gas station. She had walked into the gas station to buy an over the counter pain reliever, and both places said the lady seemed fine. She also held several phone conversations where she sounded fine. 45 minutes later one of the children called to say the mother was acting confused, lost, and not herself. FORTY FIVE minutes later!!! Right after that she drove head on into another car because she was going the wrong direction. They did find a bottle of vodka in her car which was supposedly her husbands, but to my knowledge no marijuana. If her THC was 133 the equivalent to "just smoking" then where in the heck did the pot come from??? Like I said the show stated it was 45 minutes later. Something just sounds off. Is it possible she ingested something? I am sure there is more to this story, and I am curious as to what it is. Regardless it's a sad tragedy!


My Holly plug in give away ends Saturday, be sure to twitter, leave a post, or blog about it. You can see the original give away post here: http://cjengo.blogspot.com/2009/10/walk-and-giveaway.html

Achoooo

I am sick, and it sucks! I sent a text out last night that if it's true you lose seven seconds off your life every time you sneeze than I should expire in ohhhhhhhh twenty minutes! I have some great antibiotics though and am a new fan of the minute clinic at CVS.

The therapist came yesterday, and she was so impressed with Jude. She noticed all the differences I have been referencing, and Jude even picked himself up for her yesterday. Mike told me he held himself up with his arms, and looked around for awhile. He is also getting so much better at keeping his head up when I have him resting on my hip. All this is giving me great hope that Jude maybe able to communicate with us, sit, and eventually walk. Hope is a four letter word that I keep in the back of my mind with question marks floating all around it. Although in this situation it seems we are really seeing increased progress. Now our big fight will be to continue keeping the seizures at bay. As I stated in a prior blog Jude has a few spasms a day, but nothing like his long drawn out thirty minute horrible screaming seizures he used to have. Seizures like those limit any time of progress inside the brain. We still struggle to get Jude to eat, but he likes the pediasure, especially the banana cream. So for right now we are not focusing on solids, if Jude takes them great, if he doesn't we use the pediasure. We are not going to stress over it anymore.

Jude received his approval from both insurance parties for his additional therapy at Baylor's Our House. We have not heard from them yet, but I know they will call to schedule the appointment. Since it's right here by my office I will be able to sit in on a few therapy sessions and that makes me happy. Jude seems to enjoy when I come home early to see him. Yesterday, I went home sick, and Mike said he was "bucking" in his arms because he heard my voice. I am glad he knows who I am.

So I am sure I am sick from doing so much, but what do ya do? I need the money so I work, and work on Scentsy. It's a never ending cycle, but I enjoy being busy. I am looking forward to our small vacation in February though!

A shower and a wheelchair

Last night we gave one of my best friends her baby shower to help welcome the impending birth of her baby girl. She is such a sweet soul that we were all very excited to give her a wonderful shower with great gifts. I wasn't able to make it early to help put together the food because of Em's softball, and it would also be difficult to keep Jude at her house for so long. So we got there about an hour early vs at noon, and I helped as much as I could. We enjoyed great conversation throughout the evening, and loved watching her open her gifts. I had spent a few weeks filling a box full of items, and a handy diaper tote too. In our house it seems I always need diaper changing items in a different room than where they are located. So this handy diaper tote seemed like a great invention so I snagged it for her. I then filled it full of diapers, wipes, bath items, etc. She seemed to really like it.

So as the night progressed I wanted to help clean up because I could feel the night progressing. I knew Jude would have to get home for his medications, and to try to follow his routine regarding bed time. I am afraid everyone was still talking so I cleaned up what I could and then we made our exit. Once in the car I told Mike I felt like a hostess failure because I had to leave early in addition to getting their late. He sat there for a moment and then just said, "Being different sucks huh?" Leave to my husband to come up with a brilliant and funny statement. I normally come back with a witty statement about how we aren't different, how life is great, etc, but this time I just said "Yep it does". I allowed myself to admit that sometimes it does suck being different. Mike mentioned how when my friend was opening all her beautiful gifts and everyone oo'd and aww'd he started thinking about Jude's wheel chair. He said he doubted anyone would say "What an adorable wheelchair, I want one just like it". So true. Plus, we both sat and listened to everyone talk about how mylicon drops, etc are a MUST have for a baby. We talked about how at three months the normal issues with babies went out the door for Jude and we learned way to much about medication.

I am NOT complaining at all because it was a wonderful night, it was just eye opening how different our lives have become. Yet when I held Jude when we got home I sure was thankful that I have him. He is such a good little boy, and just loves to be held. How many moms get to experience a baby that just loves to snuggle at a year old without them wiggling away at some point? Jude will let me hold him as long as I want to without complaint.


So all in all it was a wonderful evening. Her baby's room is one of the most beautiful room I have ever seen laced in hot pink, light pink, black, and green. Beautiful signs saying "Princess", and more are placed about the room in ingenious places. My friend is so excited that it's just adorable. I remember those moments of decorating, planning, and anticipating. It's such an exciting time in a woman's life, and I know she will be the best mom ever!

Morning Morning

I have a free moment so I thought I would post an update. Lately, I feel like I have so many errors in my blog because I am constantly busy at work, or home. I went to see my family who arrived from Springfield last night, and we enjoyed some great jambalaya my cousin made. She is an incredible cook, and I think we were all stuffed from the wonderful dinner. We talked a lot about their chocolate factory in Missouri, Jude, Emily's Smile boxes, and more. My aunt held Jude for a long time, and I think she enjoyed it. We all talked about how great it is that he was turning his head towards people when they called his name. This was all great, but his disabilities were also blazingly obvious to me last night. I can tell you that from a parental stand point his disabilities do not matter because I love him regardless. Emotionally though they do matter because I hurt wanting him to be able to do what everyone else does.

I sometimes have to reel my emotions back in, and realize that Jude probably doesn't realize what he can and cannot do. It's for me that I want him to be normal, not for him. I have to in essence kick myself in the tail as a sharp reminder that Jude is perfectly happy being loved and cared for, he needs little more. My husband always says that its the parents pursuit of normalcy that normally ends up terminating children like Jude. We search for medical interventions, or more instead of just accepting our children the way they are. Sometimes I believe he is probably right. So I guess it's a constant struggle of having emotional turmoil you deal with while your heart is just telling you to let it all go. I remind myself to pursue the therapy, accept my life, and move on with everything knowing is will be challenging, but rewarding. When I see his little smile I just know he is a happy baby.

This weekend I have Emily's game, and my friend Sarah's baby shower, but tomorrow I am sleeping in. I am sleeping until I cannot sleep anymore, and I know Jude will be there with me. He loves sleeping next to me on the weekend, and will rarely make a peep.

Do I see progress?

Latley we have noticed a difference in Jude. He seems more attentive and more determined to try new things. The following are the things I have noticed.

1. He is really trying to roll over, and even though he has not been able to accomplish this task he keeps trying

2. He can hit his red button or his toggle switch on his toys to make them move on a repetitive basis.

3. He gets very excited when I get home, or walk up talking to him after he has been alone for a bit. His legs wiggle very fast, and his arms seem to go up a bit like he wants to be held.

4. He is making more verbal sounds

5. He throws tantrums based on what he wants, how he wants to be held, and what he doesn't like.

6. He turns his head 100% towards the person that is talking

7. He will turn his head if you call his name

and many other items. The only thing he is not making progress on is eating solids, although I have seen all these vast improvements since we started giving him more pediasure. Jude is still having seizures, but they are still more controlled than they ever were. He has a few small spasms a day, and normally one long seizure. I sometimes wonder what more he could accomplish if he wasn't afflicted by epilepsy. I am very proud of him though, and we will continue to get him the necessary therapy he needs to continue to succeed.

Wordless Wed........for once.

The day got away from me today because it was so busy. I will leave you with some wordless Wed pictures.

A big ole boo boo!!!

Yesterday was my two year anniversary. Mike and I did not do much because of the lack of funds, but we will make up for that next month. You just adjust, and everyone is doing that right now with our economy. Although, I did make a giant boo boo yesterday, and I feel terrible. Emily called me on my way home, and I could hear Jude in the background. I asked her if she was watching Jude, and she replied she was so Mike could get the Halloween decorations out. This through me for a loop because our Halloween decorations are one of Emily's favorite things. I know she would want to participate in putting them out, although she wasn't complainig. We go ALL OUT, and I do mean all out for the trick or treaters. Well I was infuriated even more when I heard two neighborhood kids were helping Mike, and not Em. So I immediately hung up and called Mike just livid, he didn't say much....until I got home. Imagine how terrible I felt when I drove up and there wasn't one single decorations put out, there was just a nicely mowed lawn, and all the boxes down from the attic. Emily had failed to tell me Mike was just preparing the yard, and that the kids were simply grabbing boxes from him at the bottom of the attic ladder. She claims she didn't know, but Mike said he gave her specific instructions on why she was watching Jude for a few minutes. SIGH!

To say the least my husband was very upset, and then refused to put up any of the decorations, and I don't blame him one bit. He had gone to all this work of preparing the yard, and getting down all the large boxes, and what did I do? I simply chewed his tail end off.

Sigh, I am going to stick my head in the sand now............

Jude is doing well, and that makes me very happy. He is trying his hardest to roll over, and he is forming more sounds. The therapsit told us that the sounds he is making, "agee", and "maaa" are good signs. We are crossing our fingers for improvement in his abilities.

I am praying hard for our friend Kendall http://kendallbriggs.blogspot.com, please say some prayers for her.

Also, please be sure to enter my giveaway, I am sending this personally so you will be sure to get it. http://cjengo.blogspot.com/2009/10/walk-and-giveaway.html

Hope.......and dreams

Years, and well years ago when I was just a child I had such big dreams of what my adult life would be like. I dreamt of becoming a Vet where I would tend to the needs of sick animals, and I would whisk them back to health with a swift touch of my hand. I dreamt of a lavish white wedding with twinkling lights, and even more than your happily ever after. I dreamt of three smiling children, never worrying about money enrolled in every extra curricular activity they wanted to be in. I always dream of a closet bigger than my living room filled with everything you can imagine. Selfish huh? We all know that our dreams take on new colors when faced with reality, and the reality we encounter is laced with lessons. My lesson was material possessions never matter!

Although never dreamt of luxury vehicles, my family vehicle in my dream never had a handicap sticker hanging off the mirror. I never dreamt of ramps leading a pathway to my house, or having to convert my dining room for a disabled child. Never in my dreams was I trying to figure out how I could get my current "upside down" vehicle out of my sight so I could invest in a .........sigh........minivan to house a wheelchair. I never did........ but I should have, those words ring in my ears........ I should have. I should have realized that life rarely hands you what you dream. Why would I think I was exempt from experiencing any type of pain? Yet it's not really me that is experiencing it.........it's Jude. In my young dreams I never heard my husband say "I love my son so much, I really do. I would love to have a baby that can walk, and talk, but I don't think I would appreciate that baby as much as Jude, I just don't........because everything Jude accomplishes is such a triumph." No I guess I never would have heard that in my young dreams, but I am so thankful I heard that phrase this weekend. I have learned to dream in a new way, with new circumstances. I dream of Jude walking, and I get teary at versions of Extreme Home Makeover that show a fallen officer learning how to walk again. Because of Jude I have an amazing appreciation of Life that I never had before, and I am thankful. Because of him I know what that officer is experiencing, and what an amazing accomplishment he has made.

There are times I feel so lonely that I could crawl in a small ball, and never unravel. I am not perfect by any means, and I sometimes feel like I am falling apart. Each day I drag myself out of bed to go to work, but luckily it's a good place. I also pick myself up to work on the project of Scentsy that I so believe it. I pray, I hope, I plan, and I believe. Yet I talk about myself a lot on this blog, and I realized tonight that it's not me, it's Jude. What triggered this? I watched him try to crawl tonight, and I remembered what hope truly is!!!



Ps ~ Don't forget to enter the giveaway in the post below.

A walk and a giveaway

It's been a busy week for sure, but I love it that way. My Scentsy business is taking off, and insurance has picked up as well. I am holding out hope that the economy is turning itself around, at least in Texas. Last night when I got home we rushed to get Emily ready for softball practice only to find out it had been cancelled again due to soggy fields. Since we were all dressed we decided to go on a family walk, and it was nice. The walk itself didn't last long because it was a bit chilly outside, but it was still nice to get out. It was also reassuring that there were other people walking, and Jude didn't receive any stares. Many of our neighbors know our circumstance so I guess they have been forewarned, then again maybe they just know how to react properly. I guess some people are ill educated, or naturally curious. I am unsure which catagory they fall into, but please be assured I would much rather people ask what happened. I pushed Jude most of the time on our walk, but then Emily wanted to take over the duties. Jude seemed pretty relaxed, but I did notice the drool. I guess to us he is just Jude, but there are many factors that indicate he does have issues, who doesn't though huh?

Mike is on a mission to make something that Jude can use to get around the house. All the equipment we have looked at regarding crawlers are about $500. Mike constantly tells me how he can make some of this equipment we see. He is pretty crafty so I guess we will see what he comes up with.

So I pulled my panic mode again when one of my friends went in for her gender sonogram. She went yesterday afternoon, and I never heard from her. I texted her last night with no response, and no response to my email. I even dreamed that I was back in the doctors office for our gender sonogram, and relived them telling me something was wrong. Although it was like I was looking at her vs me, so I was so worried!!! I called another friend of mine who luckily had heard from her, and all is well. She is having a little boy, and I am thrilled for her. I guess I need to get past this panic I feel now when people I love are going into the doctor.

Have a good weekend all.


I am holding a small giveaway to promote my scentsy products :). On November 1st their holiday line is coming out, and I am going to grant one reader the holly plug in system with a winter wonderland bar, a cinnamon bear bar, and a Holiday Kiss bar. Ways to enter: Go to my website at www.Scentsy.com/JennOrtiz and then come back here and post a comment letting me know which products you like best. You can also twitter about my giveaway (CJENGO36), facebook about it, blog about it, or make a purchase to get extra points. The contest will run until 10/31. On 11/1 I will ship your gift directly to you :). I love these products, and they are really helping us get a grasp on things again, so I appreciate your patience during the momentary break from the normal blog routine.

Mike surprised me and stopped by the office today with Jude. I got a few stolen kisses and happy smiles from my little Juders. He seemed to be a bit more aware of people coming, and going within the office so I think that's a good thing.

Oh, and prior to leaving for work this morning Jude decided to wake up bright eyed and bushy tailed. He normally sleeps in, but today he decided to wake up and laugh for about thirty minutes. It seems like he is getting on a bit of a routine, we can hope anyway.

So my second anniversary is coming up on Monday, we really have nothing planned. I realized how difficult it is to make plans, or spend time with your partner when your life has been turned upside down. It's very difficult to find a sitter, and we feel guilty asking due to Jude's issues. I asked my dad to watch Jude one day while Mike and I had couples massages, and Jude had a massive freak out. I felt awful that my dad had to experience it, but he handled it like a trooper. Other people are wonderful with him too, but everyone is pretty busy, and well life just marches on. We have figured out how to incorporate Jude into our routine though, and life just changes a bit. We are lucky though because family members step up to volunteer and watch him so we get out sometimes. I also recently found a church that provides a night of respite care, and I am looking into that.

Anyway, it's been a busy day so I am off.

Speech evaluation, and Scentsy

Yesterday we got Jude's speech therapy evaluation in the mail, and I am afraid it brought Mike down. He said every line was a slap in the face that Jude is not normal, and very far behind. I watched Mike throughout the night, and he seems pretty down. He would make mention of Jude's smiles wondering if his tiny grins, and his laying there on his blanket would be all he will do. We can all reply that Jude is a blessing, and we don't know what he will accomplish, and etc, BUT Mike has a right to his down moments. So I let him wonder and have his space for awhile. We then ventured upstairs and watched a funny movie in hopes he would feel better.

Today Mike got out of the house with Jude, and that made me happy. I think Jude likes to be out and about. Mike is going to visit his mom because the doctors are now saying that she did have a series of mini strokes. I swear that the world of strokes are so misunderstood because doctor's never seem to diagnose them properly. We never heard the term "stroke" with Jude until about 4 months after he was born. We just kept hearing the term "bleed". I am not medically educated, well I am now, but then I wasn't and I had no idea I should be using the term stroke.

So last night Em was playing with Jude again and it was very cute! She was pretending like they were taking money and issuing tickets for the movies. She kept showing Jude how to give people tickets, and it seemed like Jude would try to mimick her a bit. Regardless of whether he was copying her, he was having fun because he kept smiling. This made my heart happy!!!

I will close by stating that Scentsy has their holiday line out tomorrow, and the holiday items are just wonderful. If you are interested visit www.scentsy.com/JennOrtiz. They make for wonderful inexpensive gifts. You can get a large warmer + 3 bars for $40, or a plug in and three bars for $25. If you are near me I can even custom wrap in a keepsake box for a small fee. Have a wonderful day!!! Here is a recent box I made for a friend who was giving a birthday gift to his wife.

Also here is an example of one of the warmers:

Happy Birthday EMILY!!!!!

Today is Emily's birthday, and I just want to take a moment to tell her how very special she is. She makes my life so much brighter because she is in it. Last night when she got home from her dads Jude was being very fussy. We put Jude in his new Kid Kart, and she ran him through the house making siren noises, so they played fire truck together. They stopped for gas, they helped people who were in accidents, and played like normal siblings. Any time she would stop, Jude would cry. It was heart warming to see them playing together........well until Jude got really angry at the new chair.

Emily sat down after their play session, and told me that she honestly had a great time with him. It was very touching! Tonight we are having pizza, and cake with the family.

Late last night Jude started crying, and just would not stop. I am not sure what was wrong, but he obviously did not feel well at all. He cried, and cried, and cried until we gave him some motrin, and he finally fell asleep in my arms. It was to the point that you couldn't even touch Jude, or he would cry again. I felt so sorry for him. I then felt sorry for myself when after I finally got to sleep my neighbor decided that 4am would be a GREAT time to sing for hours on his back porch. I am trying to decide if he was intoxicated or what the issue was. Regardless, he and I are having a chat session today if I see him. If Jude had woken up from his chorus line on the porch I would have had to have knocked him out.

Emily's delivery this weekend went very well. I also had a friend call that is wanting us to talk to her pastor so Emily can speak in front of her church. The pastor wants to make sure and see if Emily's heart is in the right place prior to her talking to the congregation, but there are little worries there. Em is true, and only speaks from her heart she knows no other way to function. Here are a few pictures from her big delivery.

Please don't forget to vote for Emily's Smile Boxes in Dallas at http://www.ilovechristiecookies.com/contest/ . It takes two minutes, and will help her out.

Also, we found out that THANKFULL Mike's mom did not suffer a stroke. They believe the issues were medication induced, and we are praying that's the case.

Smile boxes, and Kid Karts

Thanks to the support of many volunteers the Emily's Smile box holidy drop off went very smooth. The night before the delivery an old friend I haven't seen in twenty years brought by an enclosed trailer, with custom magnets for Em's delivery. He dropped it in our driveway, and we got to work loading all those great boxes. A big thank you to Aaron for the trailer, and the magnets. My friend Fleck also came by that night, and picked up 75 boxes to take to Cook's Children's in FT Worth. We then took the other 200 boxes to Dallas to Children's, Scottish Rite, and Dallas Medical City. My friend Kelly and her boyfriend Ryan volunteered to haul the trailer, and we followed behind them. Emily's dad also joined in the caravan, and helped us unload at each spot. If it were not for the help of all that contributed there time there is no way we would have been done in just a few hours. It literally would have taken us all day, and several trips in our truck to get all the boxes delivered. Scottish Rite promised to send us pictures of the children with the boxes, and we cannot wait to see them. I hope it brings them a little bit of joy. I will post some pictures of the adventure tomorrow.

So Jude went with us on our delivery, and he did amazing. He was in his big boy car seat which he seemed to love, and we also took his new kid kart. On our way home we had to stop at the store, and it was our first time to take Jude inside a location in his kart. We have received stars before, but this was the first time that almost everyone we passed looked on with wonder. At one point I was following Mike while he pushed Jude, and I was able to see people's looks after he and Jude passed. I guess they didn't think I was with them, and they just shook their heads with sympathy. The looks made us a bit uncomfortable, but we knew it would happen. Mike said to him it was final admittance that his child is disabled. I told Mike I was going to follow Jocalyn's lead and get a bumper sticker that says, "strokes suck!" that way people will know what happened. I can understand why some people that are disabled would prefer people just ask them what happened vs staring. I was also rather amazed at how many YOUNG children stared. You wouldn't think they would immediately catch on to the rather disguised kart that something was wrong, but they knew. It's like they were very curious as to how a baby could already be in a wheelchair. I guess at times in our lives we are met with our own mortality or possible tragedies, and maybe that question can pop into ones head even at a very young age. Emily sometimes questions if something bad can happen to another child, can it happen to her. Maybe the little children staring wondered the same thing. Who knows, but the stares are something we will have to become accustomed to.

While sitting in the bath last night I began to think about my grandparents. I lived with them from age 14 on, and I was thinking about how they would react to Jude. My grandfather was such an amazing person, and I am not sure he knew how much I admired him. He was the kind of person that would shut off the TV, and play checkers with me for hours when I was little. It didn't matter what game I drug out, he would take the time to play with me. He spent many hours with me in the mud while I chased tadpoles in the stream. He entertained my mud pies, and ran interference between my grandmother and I. My grandmother was also a good woman, but challenging, and we fought a lot. Honestly, my grandparents were polar opposites. My grandfather had a full education and was an air traffic controller. My grandmother never made is passed 6th grade because she had to quit school during the depression to care for all her brothers and sisters. Her vocabulary was limited, and she was from the old school that, "you just don't talk about negative situations". You didn't talk about anything bothering you, because it was better to sweep it under the rug. So I wonder how she would be with Jude, and his blazing disabilities. Honestly, I think she would be fine though, and I picture them in my head. My grandfather walked every single day, and I could see him pushing Jude in his chair down the sidewalks of the tree lined neighborhood they lived in. I see my grandmother doting on him, and buying him anything "red" because it would look good with Jude's skin color. I wish they could have seen him, but I guess they probably have.

I wasn't feeling that well Friday so besides the box drop off we haven't done much. I slept in today, and Jude is still sleeping. I am trying to motivate myself to clean, but so far that hasn't happened. I am hoping I can muster the strength and get this done.



PS ~ Mike left just a little while ago to check on his mom because his dad called to say she was acting a little strange after her medication. She is in the ER and they think she may have had a stroke, D$$$ strokes! Please keep her in your prayers. Please don't call or text Mike, he is at the hospital.

playing

This was Jude "playing" with Emily, and her friend Madison. Mike was pretending like Jude was punching them when they tried to kiss him. Jude smiled a lot and seemed to enjoy the kid time. Sometimes I wonder if he understands in anyway what is going on. Is it merely that someone was holding him lifting his arms, or does her understand he is playing with the girls. He seemed like her understood. Also, later that night I had gotten the "joy stick" out from his sensory box, and when I placed his hand on the stick he would move it, and look at it intensely. He couldn't make his had go back once it fell off, but he seemed to understand this object had a function.

Today Jude gets his kid kart, and I will be sure to take lots of pictures. Emily has her big smile box drop off tomorrow, so we are also gearing up for that.

I am rather tired today, and rather down so I am not going to post much. It's been one of those days, and a rather sleepless night. Have a good weekend, and I will post a lot of pictures from the weekend on Monday.

Oh lots of information, and a cute video

WOW, what a busy day at work I had to take a break for a minute. I would like to share with you a video from last night, and explain the significance to it. Jude was in the midst of a hard seizure, and I was holding him to comfort him. Mike came over and started kissing Jude on the head. Jude was still opening his mouth in a repetitive manner, but overall seemed to come out of the seizure. It's like Mike was able to change how Jude's brain was responding, and this was the result.

We were questioning if his laugh was a part of his seizure, but I don't believe it was. His arms had stopped contracting, he was focusing, and we were happy.

I have more great news, Jude's kid kart is in, and we are getting it tomorrow!!! I am very excited. Also, he saw his new PT today at Baylor our house. She was concerned about Jude's legs, and his feet curling a bit, therefore she is starting the process for a stander. We feel very blessed by this because I know they are very expensive. She explained that she can tell we work with Jude a lot, and that due to his tone she believes he will someday stand. WOW, that would be the miracle we have hoped for. She told us to be patient, and that in time she believes this will happen. A big thanks to my husband for always getting Jude to his appointments.

I would like to ask for everyone's help if possible. Christie's Cookies is holding a contest for the most nominated charity in the nation. They have several monetary prizes they are giving out to help fund their charities. Please go to: www.ilovechristiecookies.com/contest/ you will have to enter the name of her charity, and that she is in Dallas, TX. Thank you for your help!!!

I would like to close this post today by discussing a rather serious topic. Last night I watched the show "Prom night in Mississippi" and I was appalled. This show was based on the towns two proms, they hold a white prom, and a black prom. This was the first time they were discussing integrating the proms, and having one large prom. At first I was just listening to the show from the bathroom and I had to walk out to see what year they were referencing that this took place. I figured they were discussing 1958, no it was 2008!!!!

I was brought up to see no difference in color. In fact when I was only 5 I was on a hayride that was attacked by the KKK due to our driver. My father pushed me down into the wagon, and picked up a very large stick, that's all I remember. I remember my mother telling me that God put everyone on this Earth, and we are all equal. I took that to heart because when she passed away the woman across the street watched me. I remember getting very angry that one of her children told me I wasn't black so she wouldn't play with me. I told her there is NO black and white, only ignorant and non ignorant people (I had repeated my moms words).........lol.........I got in trouble!

Anyway, my point is I was disgusted. I couldn't believe the parents who formed groups to stop the integration, that they held the "white" prom anyway, and that the one interracial couple was shunned by her own father. I just don't understand it. I guess I am just very naive in thinking that racism doesn't happen. I guess I lived in my own happy world with my Hispanic husband, and I thought everyone else lived there too. SIGH! Makes me angry! Oh and the comments about "Well I am not racist, but I don't want them dancing together" Buddy you are racist!!!!!!!!!!!! So that was rather long winded, but well I had to get that off my chest.

another day another dollar

The neurologist decided to increase Jude's dosage of Depakote to 2 pills at night. We should see if this decreases the seizures within five days, although I didn't notice any seizures this morning. When I got home last night Jude just wanted to be held so I accommodated him as much as I could. Finally, I was jjust exhausted from the day, but Jude did not want to go to sleep. Luckily Mike helped me out, and took Jude upstairs while he watched some tv, and I slept. This morning Mike asked me if I heard Jude giggling in his bed, but honestly I didn't hear. He was afraid Jude was going to wake me up, but I must have been really tired.

I woke up this morning, and decided to get myself in shape like I used to be. I eat pretty healthy, but I am going to be more strict. I am also going to try ....... try to slow down a bit, and maybe that will bring my blood pressure down. I really think my doctors indication that this is just the past years toll on my body is true. Going to work, dealing with home, etc can become very flustering, and due to Jude's hospital stay in December I was very limited on vacation time for 09. I am looking forward to 2010 when I have all my vacation time again. I am going to start walking/running like I used to as well, of course that was easier prior to the cosmetic surgeons huge mistake.....can you hear me growling?

Anyway, I TIVO Oprah, and I watched it last night whenever I got home, and the show was about a 7 yr old Schizophrenic girl. I sat there watching the show just amazed at what her parents deal with everyday. As an infant their daughter began to display abnormal behavior, but at five years old it hit full force. She is violent, she sees up to 200 imaginary friends that to her are not imaginary. They have had to get two separate apartments because the young girl would hurt, or kill her little brother. She has spent 107 days out of the past year in a psychiatric institute, and the list of issues goes on. I told Mike that her story was very touching, and that we could probably understand more than some people who watch the show do. It's a new appreciation we have of the brain, and how it works. In her case this is truly a mental disease, and probably something that went mechanically wrong in her brain in utero. In other words the right cells just didn't go the right places. There is truly no way to "cure" her issues, and just something her parents have to deal with for the rest of her life. I felt for them. It's amazing how a tv show can reach your emotions. Speaking of I watched Extreme Home Makeover on Sunday, and as usual I was very touched with the story. I loved the part where Ashley Tisdale sang in the little girls garage, and I told Mike if that had been Taylor Swift in our garage Emily would PASS OUT! ha!

I am about to call on Jude's kid kart again, and I am hoping to freedom pieces are in so we can get this delivered. Also, the smile box delivery has proven to be more difficult this time because we have so many boxes. My friend Kelly has volunteered to take the 75 boxes to Cooks this weekend. Emily has a double header that day, so that will free us up in the morning to make the large deliveries to Dallas. She has a truck with a covered bed so she should be able to help without any issues.

I am off to work, have a good day.

A check up

Today was my first physical since Jude was born. I was rather surprised at how emotional I was when I arrived at the doctors office. I noticed I felt a little sad, and everything seemed very quiet. I began to remember all the bad news we received in that office last year. I remembered how I used to pull into the parking lot praying that we would get a good sonogram of Jude, and how I prayed things would miraculously resolve themselves. So I guess it was a strange feeling to deal with old emotions. Luckily everyone made me feel amazing, and all the office staff came to say hello. Dr Moser even came to see me, and asked me how Jude was. I explained he was well, but his seizures had increased today. She asked me if they every found a reason for Jude's stroke, but I just shook my head no. She then told me how she had just dealt with a set of twins being born, and one stroked out, and died. I felt terrible for the mom, and awful for the doctor too because I am sure that is a hard situation to deal with. Her point was that sometimes strokes just happen without any reason at all. I then got checked out and overall my report was pretty decent so that made me happy. My weight was "right on the money" she said, but my blood pressure was a bit high. Prior to my pregnancy I never had high blood pressure, but I admit I worked out religiously, and don't now. My heart rate was also increased, but it generally is, and it has been since Emily was born. Their explanation when Emily was born was that the increased blood flow sped up my heart, and also caused palpitations?!?. Anyway, they also took a full blood profile to make sure my platelet level is doing okay, and that my potassium is back to normal. This will be the first blood profile I have had since right after Jude was born when they were checking for the resolution to the ITP. I also had one other issue arise from the cosmetic surgery I had that the doctor ROYALLY *&@( (refraining from cussing) messed up. I have complained about that before on here, and it's now rearing it's ugly head again Maybe insurance will pay to fix it, but I doubt it. Have I mentioned I dislike that doctor??? Just wondering. Anyway, I was overall pleased to see everyone that helped with Jude's delivery.

I thought about going next door to the perinatologists office to explain to them what happen, but I ran out of time. Mike said he was going to take Jude by their office next week, so I will let him provide the explanation.

As I mentioned Jude's seizures have increased, and they suddenly changed in presentation. They are becoming more violent again, but they just look different. Just is not responsive during the seizure, and they are lasting a bit longer. I put a call into the doctor who said that he believes the medication needs to be adjusted for his new weight, but that infantile spasms can morph into the full tonic seizures. Regardless of whether that is happening the medication change should work. I asked the doctor if there was ever any hope that Jude might be seizure free, but he just replied "that's up to Jude and his body".

A busy weekend

The smile box making party went amazing, and every nook and cranny of my house is filled with a smile box. On Saturday we will be taking them, and dropping them to local hospitals. We have a limited amount of time that day due to Emily's softball games in the afternoon. Since we will be on a time crunch we may ask someone to make the drop to Cook's for us. We do not distribute the boxes to the children because the child life coordinators do that, so the drop off is fast. The child life directors pick and choose who can receive a box, and then they inspect them for safety, it's very understandable. I am hoping that we can received pictures of the children receiving them someday. We are now campaigning again for donations because our account is a bit depleted with the box making party. Emily even sat up a hot chocolate stand with her friends on Sunday to raise donations, it was pretty cute!! Here are some pictures of the event. Em's dad even came, and helped and he helped all the kids upstairs.



I am happy to report that Jude did end up eating the day I posted so frustrated. He took about 30 ounces total which is a pretty good day. He just eats at such strange times, but at least he eats. Somedays he takes 18 ounces, and somedays it's 30, you just can never tell. He is still pretty much refusing anything other than a bottle, so we load his bottles with rice, and pediasure. We gave him some baby food this weekend, but he refused, we gave him some cake and he really liked it but became choked. The therapists at Baylor are suggesting another suck swallow test, so I guess we will eventually get that done.

I am happy to report that Jude's kid kart is in, and we are just waiting on the delivery. I cannot wait to let him sit upright, and gain some independence. I had a wonderful weekend with my little Jude, and I cannot wait to see him tonight.

I had another good week with Scentsy and am very happy with how great this product sells itself. I am hoping we can get some bills paid off soon.

I will keep everyone update on the kid kart, and I will be sure to take pictures.

EAT please

It's 2pm, and Jude has had 5 ounces so far today. The bottle had rice, and pediasure in it, but it is still only five ounces. I hate wondering what a good amount of food is, and what a dangerous amount of nutrition is each day.

It's our one hold back.............it's frustrating................... I am honestly just so distraught with the situation. We know Jude is gaining weight, so whatever he is doing has to be okay...right? I would think that 5 ounces would be equivalent to a normal breakfast. I am just at a loss. Emily had eating issues due to acid reflux, but it was never to the degree of Jude's eating issues. The new world we have entered of a stroke victim always creates an opportunity for education. I admire Caleigh's mom, and Kendall's mom, and others that seem to be a plethora of information. I seem to be always searching for answers.

Em has a game today, and then we have our smile box party. I am praying Jude eats prior to the game.

bad weather, scary moments, and wonderful moments

Let's play show and tell, about my drive home last night.

My phone rings:
Mike: Where are you?
Me: Getting on 114
Mike: There is a really bad storm coming
Me: How bad? It doesn't look that bad
{pause........driving over hill}.
Me: OH MY WOOOOOOOORD I see it!
Radio: If you are on 114 you need to take cover

Me: Where did this come from? What is going on? OH MY WORD, I am driving into the mouth of HE$$!
Mike: {I am sure trying to control laughter} just pull over
Me: Ok I am running into home depot
Me: IT'S CHASING ME!!!

So I pull into home depot, and literally all the employees were out looking at the sky, and whispering to themselves. I ran in, and waited for a bit, and then left once it blew past. We really didn't get a bad storm, but the people to the East of us got hit pretty hard. It just looked terrible, but had little bite.

When I got home I walked in to find this:

That lazy cat just loves Jude!!

Mike was again just worn out with Jude's constant crying, and Jude was napping because Mike had let him cry it out for awhile. I understand how frustrating it can be, and Mike is going to talk to the therapists about any recommendations for controlling tantrums. Also, Jude started with his new speech therapist yesterday. Mike said he was impressed with the place he took him to which was Baylor's Our House. The therapist told Mike that she believes Jude looks a lot better than many other children she sees. She is also impressed that the stroke did not render one side of Jude's mouth unmanageable. Jude's stroke was bilateral though although it was worse on one side than the other. She did believe that he has low muscle tone around his mouth, so is therefore impressed he takes a bottle so well, but that could explain the intermittent feeding problems. She informed Mike that whenever she put her finger in Jude's mouth he followed every move she made with his tongue. She said this is a great indication he will have the capability of being able to speak someday. This was great news to us! He will continue to have therapy at home, and will begin therapy at Our House on a continuous basis too. He sees the PT there next Thursday.

We did try out Jude's bath chair last night {drum roll}, he hated it! When I pulled the velcro to let him out it scared him so bad, we got the full lip quivering cry. I am sure in time, he will get used to it.



So the great news about Emily is that she achieved Hall of Fame at her school again, and within the first six weeks! They select a small amount of students each year to be inducted into their "Hall of fame" based on attitude, schoolwork, and citizenship. Emily was selected by one of her teachers based on her creative writing skills, constant participation, high level of thinking, and for always having a smile. I am just thrilled!!!


Tomorrow is the big smile box making party, I am hoping all goes well. My house is a mess so hopefully everyone will overlook that. My life is so busy lately.

Kidds Kids

Years ago when I was a senior in high school I became attached to listening to the Kidd Kraddick in the morning show. I remember that he was expecting his first child Caroline.........who is now in college, and that tells you I am old! During a routine sonogram the doctor explained to Kidd and his wife that there could be something wrong with his daughter. I remember him telling the story on the radio, and explaining how distraught he was. He prayed and pleaded with God that if she was okay he would do whatever he could for others. We all know that those prayers don't always work, but thankfully in their case Caroline was fine. Kidd then started the Kidds Kids foundation, and I have followed the charity for years.

Why am I telling you this story? Because today is Kidds Kids day! It's the one day a year they ask for donations to send chronically ill children, and their families to Disneyworld. This year they picked 53 deserving children, their siblings, and their parents, and are whisking them away for a week in November. They supply everything including doctors to insured the trip is safe, and Southwest even donates a plane for their use. As the mother of a chronically ill child I can relate to how wonderful this event would be. I can also relate to how fabulous it is to include the siblings in the families, and to make them feel special. Many times the siblings are overlooked in a situation where another child demands time, and financial resources. So please, if you have anything to spare consider going to www.kiddskids.com and donate. I have very little, but I donated some today and in the line for company, I wrote "For Jude". I did that because I know he would want the these children to go and have an amazing time!!!

I want the focus to be on Kidds Kids today so I am going to close there. I do have some great news about Em I will share tomorrow. Have a wonderful day, and remember the children.