Wednesday, September 30, 2009

A bath chair!

Jude received his bath chair yesterday, and we were thrilled. We had it sitting int he living room so we decided to try it out. He isn't fond of the leg restraints, but he likes it otherwise.

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Can I also tell you I love our new vision therapist? I mean it! She brought another huge bin of equipment for Jude, including a multi switch plate. Jude can now hit a button to make different equipment go on and off as a reward. They even brought him a tiny radio he can turn off, and on.
All the equipment we are starting to received, purchase, and borrow is incredible, but it's beginning to create a space issue. Eventually we will have to convert my dining room into Jude's room as his room is currently upstairs. I have considered getting this started since we need a place to store everything.

Jude had several seizures last night, and he didn't want to eat. I am hoping, and praying he isn't catching this bug everyone is getting.

I am busy at work so I have to run, but I wanted to share the bath chair news. It's amazing how adaptive equipment can make me very happy!

Tuesday, September 29, 2009

Eating away at nothing

One of the biggest challenges we have had with Jude is getting him to eat properly. Jude is over a year, and is still using a bottle as his primary source of nourishment. Granted each bottle is filled with half formula, half pediasure, and rice. He is getting all the calories he needs, but it does lead me to wonder about how we will feed him in the future. When Jude was born he immediatley latched on and had no problem nursing. He then easily transitioned to a bottle, and at three months was even easily eating some baby food. He would eat an entire small jar in one sitting, since the seizures started we are lucky to get any baby food down him at all.

I am not sure if it's a refusal to eat, or if Jude doesn't understand how to eat solids. It's well known that seizures can delay, or even destroy certain parts of our development. Lately we have learned to grow accustomed to Jude's feeding schedule. He does not follow the routine of a normal baby that wakes up extremely hungry in the morning. Jude has to wake up, and see his surroundings for awhile before he will take his bottle, eventually though he will eat 6-9 ounces in one sitting. We then have to pace his feedings throughout the day, and if you try to feed him when he is not hungry, all heck will break lose. He gets very very angry with you! Last night I attempted to feed him some sweet potatoes, and corn, but he would have no part of it. He will at times eat about half a jar of food, but no more than that.

So I guess only time will tell if Jude's eating habits will change. We have wound up in the hospital twice when he just flat out refused to eat for several days, but it turned out he was sick both times. Jude is beginning to find his hands so I am hoping that this is a sign that he will someday begin to use utensils. It's amazing the things you worry about, and come to understand in a situation with a child with disabilities. The only thing I ever talked about with Emily regarding food was how she liked it so much when she was a baby. It's just a whole new world of discoveries I guess, and learning how to deal with certain situations.

Monday, September 28, 2009

A wonderful wedding

What a weekend! Our festivities began Friday and like I said ran straight through the wedding until Sunday morning at 2am. We helped clean up after Rachelle's wedding so that explains the late night. Sad part is I am so old that I woke up Sunday morning feeling like I had been ran over by a train. I was just overly tired, and sore from working to clean up. My aunt watched Em and Jude after the wedding, so that means Mike and I got an adult night out. We stayed the night at the hotel we stayed at when we were married, and it was so nice. At first Mike was resistant to leaving Jude, but the next morning he mentioned how nice it was to spend some quiet time together. We love the kids so much, but sometimes we just need some adult time away. It helps us collect ourselves, and press the reset button.

My sister was beautiful, and I was so honored to be a part of her day. Emily thought she was a princess, and smiled at everyone that would look. My sisters new husband bawled like a baby when she came through the large chapel doors, and that of course led me to cry. There were many tearful moments of joy, and many memories created that night. Everything again reminded me that it's the small moments in life that create such lasting conversations, and smiles. Mike and I smiled talking about the day Emily gets married, and how emotional that will be. I watched my dad fight back tears during his eloquent speech, and I again got rather misty eyed. It was a huge deal to me that I was at Rachelle's wedding this weekend since we were apart for so long. She is a wonderful, caring, and beautiful person with a heart of gold. She does no wrong to anyone, and is such a wonderful example of how a person should behave. She is always positive, and just sheds light wherever she goes. I hope she has the best life possible.

Jude participated as much as he could, but he was still very much a part of the wedding day. He was in the pictures, and Emily whistled at him to get him to smile. His seizures picked up a bit this weekend, but he did smile, and giggle most of the time. He is also eating fairly well, but I really think we need to start introducing some other foods such as yogarts, smoothies, and more. He cannot chew, but he
can take new liquids.

Here are some pictures from the amazing weekend.

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Sunday, September 27, 2009

Giggles and a marriage

My baby sister got married this weekend, and I am so happy for her. I am officially exhausted!! The events started on Friday, and ended last night about 1am when we packed and loaded 5 trucks full of decorations, plates, etc. It was all very worth it.

So I apologize I have not posted. Today I got in, and only wanted to sleep, but Jude had other plans. This is a video of him with Emily. I think he was glad we were home. I will leave you with the video, and post more tomorrow. I hope you enjoy his giggle as much as I did!!

A big thank you to Jennifer for uploading the video so I could share it. I am afraid Jude has a small spasm at the end of this video, but even with that his giggles are so refreshing.


video

Thursday, September 24, 2009

Jude was so happy to see Em!

Welcome home sissy!!! I missed you so much ~ Love Jude

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Wednesday, September 23, 2009

Temper, and emails.

I would like to start this blog out with a glimpse at Jude's little temper.

See no tears:
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Oh wait.........he might have a tiny tear here:
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All better after the paci, and much soothing:
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Next I would like to reference a rather serious subject. Over the course of the past year, and a half since I started my blog I have received many emails. I receive thank you's, advice, and general introductions for moms who are facing similar situations. I love every piece of mail I get because it shows that Jude is helping others through his circumstances, and strength. Although, many times I get emails from moms saying "I am so afraid I did something to cause this", "I had some drinks at night before I knew I was pregnant", "I was on my feet all day, and stressed at work", "what if I caused this at the delivery" etc etc etc. It's the classic "mom guilt". In our society moms of the disabled are sometimes looked down upon by those who don't understand our situations. They don't get that not all pregnancies go according to plan. I too wrestled with guilt wondering what I had done to cause Jude's issues. I literally sat there in the doctor's office looking at the in utero MRI that clearly showed two bilateral spots of blood indicating a stroke, and still questioned myself.

It's almost like my brain knew that there was an explanation for what has happened, but my heart wouldn't accept it. I knew that I had to have done something wrong if I could not fulfill the expectations for having a normal pregnancy, a normal delivery, and a normal baby. I questioned the fact I had just and I do MEAN just, like days before, gotten off my birth control prior to getting pregnant. I questioned the argument Mike, and I had on New Years Eve, and I questioned my wine I had at night prior to knowing I was pregnant. Jude's neurosurgeon was so nice when he could tell I was upset, and I now try to reiterate what he said to me to others. He basically told me that there was nothing I could have done differently, and that we just pulled the short stick in life. He said he could tell from my records I was a dedicated and loving mother who did everything I could to have a normal pregnancy, but it just didn't go our way. He said as frustrating as it is there are sometimes no explanations as to why bad things happen to good families.

Yes it does seem unfair that there are so many woman that do not want children that have blissful easy pregnancies. It's also unfair that women who abuse their bodies with drugs, alcohol, and more also have normal pregnancies. Although, would we wish anything less upon them, of course not.

If anyone is thinking of getting pregnant I encourage them to have testing done, take pre natals, abstain from alcohol, and stress. Although, even in those cases we sometimes just grab on to that short end, and something happens like a premature birth, a genetic issue, or yes even a stroke. I guess I have just decided that it's what you do with the stick after you pull it that counts. We have decided to turn ours into a cane, to help us up the mountain we climb.

Tuesday, September 22, 2009

Hissy fits, and holding

When I got home yesterday Mike had to go to my sisters to evaluate a painting job they needed. Jude, and I spent some quiet time together since the house was empty. This was basically me holding Jude because he did not want to be put down. Mike said he had been battling Judes temper again all day, and his need to be held. I noticed that Jude's nose was rather yucky, and I believe he is getting a little cold. This causes his increase in the seizures I mentioned, and he probably didn't feel 100%. This is probably allergy related because of all the issues with the rain, and the air.

So I held Jude, but also had to set him down every now and then, and he didn't like that much. Finally I fed him a bottle, and turned on the Beatles cd, and he went fast asleep. Mike came home telling me I put him to bed to early, but Jude slept through the night. I enjoyed my time holding Jude, but I wonder why he feels he must be held all time. I don't mind holding him at all, in face I LOVE IT, but I still wonder if it's a sensory issue. Whatever it is I will make him feel secure.

I am afraid that therapy could not work with Jude again yesterday because he was so upset. I am hoping this issue stops soon so he can benefit from what ECI has to offer. Also, he starts with his new therapy center in two weeks. Therefore, he will be getting therapy 3 times a week.

So my entire office smells like Scentsy Snowberry, and it's wonderful! My boss just came in raving about the fragrance, and took off with a catalog. I swear this stuff sells itself which is great!


Monday, September 21, 2009

Da$$ seizures!

Jude's seizures have greatly increased, and I am not sure why. He has several small ones yesterday, and then two large ones last night. They are even waking him out of his sleep, and this concerns me. I also noticed he was rather raspy sounding last night, but again that could be the saliva causing issues. So it's a question of the weather, illness, or if his medication needs adjusting again. I wonder if we will ever fully be free of seizures.

Jude overall seemed pretty happy yesterday even throughout his seizures. He smiled a lot, and interacting with me some, but not a whole lot. Jude still cannot reach, grab, and he rarely makes eye contact. He will however smile, and giggle if you talk to him, and cuddle him. My friend Fleck also witnessed Jude's temper tantrum I always talk about, and she just said "oh my!". So he does have a little temper on him if he doesn't get his way.

I did hear back from the adaptive equipment facility, and I have been assured the stroller has now been ordered. I was told that there was a coding issue with the nurse that was handling the order through insurance. I was also assured that the bath chair should be here by Friday, and I hope that is true. I am anxious to see how Jude handles his stroller, and if he likes it.

Jude in his skater outfit this weekend:
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Well Emily is off to camp this weekend and I am going to miss her. I am praying for her safe journey to camp, and home. She was very excited, and barely slept last night so I am hoping she has the energy she needs for the day. While I was there I witnessed her friend that is special needs, he was just as excited as the rest of the class. He was functioning, not in a wheel chair, but it was obvious he had issues. I was so happy that the children included him so willingly, and how well he fit in with everyone. I found myself hoping that Jude would be able to participate in events like this, and be accepted by so many of his peers.

Here is a pic of Emily with her two friends I reference on my blog a lot. They are the three musketeers, and pal around together all the time. They are also the ones that always help Em put her smile boxes together. Maddie always helps her too, and is off on the trip with them.
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Also, my sister is getting married this weekend, and I am very excited for her. My sister, and I were very close, and I watched her a lot until she was two. We were then separated for almost 16 years, so this is such an honor for me that I will get to attend her wedding. She is also now one of my best friends. I got to attend her bachelorette party this weekend, and it was such fun seeing her all smiley! She is a youth pastor, so be assured the party was under control :). I wish her a lifelong marriage full of happiness.

My sister being silly:
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Sunday, September 20, 2009

A weekend update

It's been a fun weekend so far. Emily's game did get cancelled so we spent the day together yesterday roaming to mall. We had a nice time together, and now today we are listening to my husband yell over fantasy football. It is rather comical how upset he gets over his players, he is so loud he literally cannot hear Jude if he cries. That's right, I have the loudest husband in TX!

Jude is doing well, but is limiting his eating again. He is very smiley today though, and is currently playing with Emily. He seems to respond to her so well, and like he truly understands who she is. When he is with me I sometimes wonder if he knows who I am especially since I am not always at home due to work. I really hope that as time passes Jude will begin to display more milestones like reaching, grabbing, and hopefully sitting.

Jude is also still choking a lot on his saliva, but seems to get over it each time. Tomorrow Em leaves for camp, and I am going to miss her very much!!


Friday, September 18, 2009

a stroller mess

We are heading into another weekend, and Emilys softball games officially start. I am thrilled that she will be playing this weekend, and we are hoping for a break in the rain. Starting the season out having a rain cancellation wouldn't be a great thing. This brings up the transportation issue regarding Jude again, and waiting on his adaptive stroller. I cannot even begin to explain to you how ready I am for this piece of equipment. Jude is so heavy now that his current stroller is no longer any use to use, and an umbrella stroller is out of the question because of his head control.

I really believe that Jude's stroller will also give him a sense of independence he is currently lacking. Even though we pick Jude up, place him in chairs, etc, he spends the better part of his life laying down right now. I think it will be a relief to him to be at our level, and hopefully he can see around him. Now having said all that let me tell you my conversation today with the adaptive equipment place.

Me: This is Jennifer Ortiz and I was just checking the status of Jude's equipment.
lady: Well I am showing the only thing the insurance has authorized is the bath chair
Me: Sigh!!!!! I talked to you guys over a month ago, and the stroller was the first thing approved. I even sent you a copy of my approval letter
Lady: Oh - pause
pause
pause
Lady: Maybe the authorization is in the file and not in the system
Me: Are you telling me the stroller hasn't even been ordered yet??
Lady: Um can I have someone call you back
Me: I guess so

So to say the last I am a bit frustrated. I am holding out hope that they will call me back to explain that the lady I spoke with had no knowledge the stroller had been ordered. I am well aware it can take up to four months to get the stroller, but I would at least like to check the progress. I am currently reminding myself to be nice to the people that are ordering his equipment, but if nothing has been ordered I may get a bit miffy!

So Emily goes to camp for the very first time next week. She is going with her school, and she is very excited, and I don't blame her at all. I loved going to camp whenever I was a child, and I have fond memories of all the great activities, and games. The great part is Emily's dad is going with her so she will have a personal chaperon there with her for protection, and to share in great memories. I am just thrilled he was able to take the time off work to go with her. Emily came home last night telling me ghost stories that her teacher told her about "cabin 13". She seemed genuinely concerned and I just laughed and replied, "Em first of all there never is a cabin 13, and second that's the same story I was told as a kid". She seemed relieved, and I just giggled.

Thursday, September 17, 2009

a bit of information for you

It's another rainy day in SeaTexas. I am pondering the thought of buying a copy of Ark building for dummies.

I had received an email from Tara at Kidz a connection for inspiration requesting to list information regarding my blog, and I was so honored. So yesterday she featured Jude's story, and I cannot thank her enough! Please visit http://kidzorg.blogspot.com/

Earlier Mike called, and Jude was screaming as loud as he possibly could in the background. Mike was again about to pull out the remainder of his hair that's turned gray from stress. I am not sure why Jude does this, and no one seems to have an answer. The neurologist thinks it's purely behavioral, and I again think this may be genetic. I keep telling Mike I think he is getting paid back, but he doesn't like that answer to much. I actually feel terrible for Mike, and Jude when Jude throws his tantrums. When he gets in a bad mood there is truly nothing that will make him happy until he gets his anger out. Mike has learned that he has to put Jude in his bed and let him cry for a bit, and he will calm himself down. I sometimes wonder if this isn't pure frustration because like a stroke victim Jude mentally wants to do thing, and physically cannot.

On another note I have found a bit more energy. I am not sure where I pulled it out from, but I found some because I have started a weekend business. I really needed to find a way to make some extra money to pay off medical bills, and have a bit of spending money. I was tired of feeling like I am just treading water since Jude's diagnosis. Also, it's a great way to fundraise for Em's smile boxes because I can give up to 15% towards her cause. Anyway, drum roll..........I am now a Scentsy girl! Now let me explain that when I received a candle party, or jewelry party invite in the mail I normally CRINGE. Although, I went to a scentsy show, and was so 100% impressed with the product that I signed up under my friend Kel. It is as they say, the hottest new thing in candles, and they are wickless, and flameless. I will probably have them in every room of my house at some point. So if you are interested in any scentsy products please remember I am a distributor, and I would be happy to help you. Here is my direct link https://www.scentsy.com/JennOrtiz .

Our life seems to be a little more normal lately, and I welcome the relief. I have ran into old friends, and I hope we can see them again. I also just feel a little more comfortable with our situation, and have more confidence in Jude's abilities.

Wednesday, September 16, 2009

morning, afternoon, what time is it??

I apologize that I have not blogged today. I have been so busy at work that I had no idea we were an hour from quitting time. I have had little time to do anything today, but work. I guess that means the economy is picking up, and that is wonderful!

I will post a quick update on Jude. He is doing very well, but his seizures have increase a bit. I am blaming the increase on the recent Seattle type weather we are having in or normally sunny TX. Everyone knows that Emily has a special bond with her borther, and therefore many of the neighborhood children do too. Last night our resident adopted neighborhood kids Addison and Casen were over. I was so touched at how loving they are to Jude even giving him kisses on his cheeks. He loves playing with them, and feeling included, and they do always include him.

I am happy to announce that we set the drop off for Emily's smile boxes for October tenth. We now have 325 boxes to deliver, and would love to thank everyone for your generous help, and donations. I cannot WAIT to hear how the children respond to the boxes.


Monday, September 14, 2009

rolling over, and more

In my life it's a never ending tug o war of what the world has taught me is correct, and what I feel I must do. My husband has become my sons primary care giver, and I struggle with this everyday. That doesn't mean I don't love my husband with all my heart, and appreciate what he does. It does however mean I get up with a heavy heart I am leaving my children, and a happy heart I have a good job. Again, I reiterate that it is a tug o war of feelings. In my eyes I want to be with my child to help him grow, and develop, as a mother I feel that''s my responsibility. I want to take Emily to softball, and participate in school functions. It is due to my determination that I hold three licenses in my field with near twenty years of experience, and this equates to a nice job. Therefore, I am in the position of providing for my family, and it is sometimes an odd feeling. I understand how men feel with the weight of the world is upon their shoulders because they are solely responsible for the financial outcome of their family's daily living. I also understand how important the woman's role is to the family, and even more how important he stay at homes dad role is. I am sure it's quite the conundrum for my husband too, yet he seems to handle the situation fairly well. He does however get very frustrated with Jude when Jude has a tantrum, and this adds more stress to the situation. I understand how trying it is though, and I think anyone else in the same situation would feel the same way. Although I sometimes wish that Publishers Clearing house would find their way to my door with a check for just enough to pay off my house, ha!

So ignore my prior rant, and let's just chalk that up t something I had to get off my chest. I have stated before that I share my private struggles because I think it's important to see all aspects of what you deal with in situations like ours. So I am happy to report that Jude had a very good day with his therapist yesterday! Luckily our little boy decided to cooperate this week with Leah, and I am happy to report he rolled over TWICE on his own. In addition to that Jude sat a few seconds unassisted, and he was really paying attention to a green sand weight. Jude also seems like he is trying to roll from his back to his front. I am hoping that he will eventually accomplish this task.

I just got off the phone with Baylor our house, and they are setting up the evaluation for speech, and PT for Jude. The speech is suppose to also help with his eating, and they had nutrition therapists on hand if we need one. So on October 1st Jude will be attending his first speech therapy, and then the following Thursday he will attend PT. I think it will be good for him to have a change of scenery, and the availability to additional equipment. I love his therapists that come to the house, but I think this will help too.

We still have to finish getting the rest of Jude's blood work to evaluate any reasoning for the in utero stroke. We got side tracked due to Jude's recent hospital stay, but I am not rushing back to allow them to take more blood either. The next time they need to draw his medication levels we will draw for the additional labs that are needed.

Right now it seems that Jude is making progress, and we are very thankful for that. Although, at times I feel like I am doing a ballet dance and tip toeing through a mine field. I guess we just keep hope that there isn't an underground mine we can't see that is just waiting on us to make a false move.

a deep belly laugh

I didn't have time to update this weekend so I will lump everything into this post. Friday night Emily had a birthday party, and dinner with her dad. Mike, and I stayed home, and took the evening off because I knew it was going to be a very busy weekend.

Emily, and I had been invited to pageant to set up a little booth to sell raffle tickets for Emily's Smile Boxes. Yes, say what you will about pageants or talent competitions but Demi L, Oprah, Justin T, and all them did them, and besides they offered to help Em out. So we left Saturday, and Sunday morning to set our little table up. We sold small items at our table, along with raffle tickets for great donated prizes. I am happy to report that we made $300 for Emily's Smile Boxes, so a big THANKS to all that helped out. We were very tired by the end of the weekend, but THRILLED we made so much. We are now considering making Halloween boxes to go with the Christmas boxes since we will be dropping them off in October.

We got home on Sunday evening, and Mike immediately handed me Jude. I enjoyed seeing him, and had missed him very much. I was going to take Jude with me Sunday, but Mike said it was game day, and Jude had to be in his uniform on the couch with him. So Em, and I both played with Jude for awhile once we got home. Anyway, Em would kiss him on his cheeks, and make a high pitched whistle noise. Suddenly Jude started laughing hard, and it wasn't his pterodactyl squeal. He was actually giving us a deep belly laugh to where his shoulders were shaking. Emily and I got such a kick out of this that she continued to do her routine over, and over, until Jude was tired of laughing. I ran upstairs to tell Mike, and he was sad he missed it. I am hoping Jude will do that again soon.So Mike texted me earlier, and told me that Jude was refusing to eat again today. I am unsure what his issue is with feeding, but we will hopefully work it out eventually.

Ok, now on to the issue with Kanye West, and Taylor Swift. Taylor is Emily's favorite singer, and I know she will be furious when she hears what happened at the MTV awards. I think Beyonce's video was wonderful too, but is it necessary to pull a hissy fit in front of millions of people because you don't agree with the decision made for who won?? We all have our own opinions on what is right in this life, what is good, what we enjoy, and what we shouldn't enjoy. I guess I am glad we have good ole Kanye around to teach my child how one SHOULDN'T behave!

Friday, September 11, 2009

All types of therapy

Since we live in a smaller county than many in the surrounding area we are sometimes limited on what therapists can bring to help Jude. Many kids we know receive standers, chairs, etc on loan, but since our county is small they don't receive as much as other counties. We are thrilled though we the service we receive, and I have nothing but praise for Leah, and Amy Jude's therapists. Yesterday a vision therapist came with Leah, and I came home to a HUGE suitcase full of vision stimulation toys. I was so thrilled to walk in and see such wonderful equipment to help Jude.

Mike said the therapist was so excited to meet Jude, because she had read his story in the newspaper. She spent a lot of time with him evaluating what she thought his issues were, and talked in length with Mike. She said that she agrees Jude has CVI - cortical visual impairment, and that she noticed Jude has classic symptoms that point to this diagnosis. My understand that CVI is not true blindness, but a lack of the brain being able to process the images. Therefore, the images can some through scrambled, or they may not be able to see them at all. So Jude will look at me, and seem to have a moment of clarity where he smiles, but then he will sharply turn away. I always thought this was from over stimulation, but now I believe this could be because his brain is not processing my image correctly. We already know that the doctor said Jude's optic nerves were gray, which is another indication of stroke, and cvi.

So I rummaged through the box admiring all the nice gadgets, and I took them out one by one. I found some tiny socks with bells on the toes, and I slipped them on Jude's feet. He wasn't as impressed with the socks, as he was with the bell bracelet for his arm. He kept ringing his bell bracelet giggling over, and over.

So today at work I had one of my wonderful customers come in and talked with me. His son had been in a motorcycle accident a few years ago, and he was asking me about liability for home health workers. It was a topic I could relate to, and our conversation grew into personal experiences. We discussed therapy, hospitals, and more. He was telling me about the issues his son has, his struggles, his pain, and his aggressiveness. In a meek voice he said "I know this will make me sound like a bad parent, but there are times I think that modern medicine shouldn't have saved him". It's a heart wrenching thing to hear, but one I have heard multiple times from parents with children that suffer traumatic brain injuries due to accidents. With Jude we know no other way of life. We know that it's unlikely he will ever marry, or have children, and we know he will always depend on us. We accept this, and we honor the challenge. Although, with children struck down in the prime of life it's so challenging for these parents to watch their children's daily struggles just to breath, eat, swallow, and function like they used to. I assured him that although it seems like a terrible thought, it's a natural one, and that I had heard that same sentence from others in his same situation. No one can really relate unless they have been in that situation, and know first hand all the thoughts you encounter. I wanted to give him a little hug, but I just offered kind words. You could tell he was a strong man that offered his son a great place to live, so I know it was a fleeting thought.

Have a good weekend all. I have been 100% busy today, so I am getting back to work.

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Thursday, September 10, 2009

a walk

Jude gave Mike issues again yesterday with his temper tantrums, and poor Mike got so frustrated. Although, by the time I got home Jude was all smiles, and that was great. I decided to take both of the kids on a walk, and we enjoyed the evening air, and Emily enjoyed telling me about her day.
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Jude, and Emily both went to sleep within thirty minutes of each other last night, which is amazing. It was a hint of normalcy in our house which is something we don't always feel. Today Jude has ECI therapy, and we are hoping he does not throw any tantrums so the PT can work with him. I also called and talked with the other therapy center, and they are going to evaluate Jude once they receive a prescription from his doctor. His doctor is fabulous, and gets us anything Jude needs so I am not worried about that taking place. The next few weeks promise to be full of steps towards making Jude a bit more independent.

I do need some feedback. If your child received smile box, what would they like to receive inside of it? Without limitation of funds please let me know. We put markers, crayons, coloring books, mad libs, stuffed animals, stickers, stamps, pens, and card games. I need other ideas, ask your kids, and let me know.

Wednesday, September 9, 2009

A little more information

Yesterday when I got home Jude was very fussy, VERY FUSSY! His grandmother had been rocking him trying to get him to quiet down, but it wasn't working. I took him, and wrapped him tightly in a blanket which seemed to make him a bit happier. I believe Jude likes feeling secure, and this leads me to want to look for some sort of compression blanket. Normally if Jude is just whining he will pucker out his bottom lip, let out a whine, and he doesn't shed any tears. Last night real tears fell, and I knew he was hurting somewhere. Mike stated Jude has two seizures yesterday so I assumed he had a headache and gave Jude some Motrin. This seemed to do the trick, and he slept for about an hour. He did great until bed time, and then he started crying again. We finally got him to sleep, and he slept through the night.

I am looking into extra therapy for Jude at "Our Children's House Baylor". I plan on calling them today to see if we can schedule an appointment. I am hoping that goes off smoothly without issues. I know we shouldn't compare our kids, but I do find myself wondering about Jude's abilities. I wonder if any of the disabled children of the moms that read my blog started off with Jude's issues, and still learned how to sit, speak, or eventually walk. My biggest concern is that Jude still cannot keep his head up, but he is trying. He is beginning to lean his head back, and look me directly in the eye with a grin. He is also raring his head back with his mouth open, and presses it on my face with a giggle. I truly believe this is Jude mimicking my kisses to him. He also will finally keep his head straight, and turn towards the person calling him, although it soon falls. I accept Jude no matter how he is, but I am always evaluating our circumstances to see if there is any additional help we can provide him.

Mike and I discussed yesterday how Jude is beginning to get "the look" from others when we are in public. We honestly don't mind at all, but he is beginning to show his disabilities due to getting older. I wonder how people will be when he is in his adaptive stroller. Mike showed me a rather inspiring story from a father the other day regarding his son with CP. His son was deprived on oxygen at birth, and suffered long term disabilities. He did not walk, talk, etc but he could react to his parents, and they insisted on treating him like the rest of their children. They talked with him, sang him his ABC's, etc. One day they got him a unicorn {an adaptive device where you can type on a computer using your head} unsure of what his response would be. To their surprise he typed out "Go Bruins!". It wasn't hi mom, or hi dad, it was letting his parents know he understood what they had been saying, and that he was a sports fan. So maybe there is a lot more going on behind the mask of these disabilities than we think there is. Maybe our children understand more than we have ever given them credit for.

Tuesday, September 8, 2009

What a weekend!

So Jude's birthday party was amazing! I was afraid he would be overstimulated and therefore not enjoy any of the day, luckily I was wrong. Jude seemed to interact with others, and enjoyed everyone singing Happy Birthday to him. When Mike tried to put Jude's hand in the cake Jude was very upset, but then got his first taste of icing and was instantly better. Jude also enjoyed everyone gathered around using the parachute, but he did gasp at the air a bit. We felt overjoyed that so many people took the time to celebrate Jude's life with us. We spent lots of time with our family that came into town, and overall had a very nice holiday. Jude ate well, he seemed to play with us, and he is even making kissing sounds when we pick him up. We can only hope and pray that this progress continues. I prefer writing good news then the sad news we seem to encounter so often.

On another note I had mentioned that Emily's Smile Boxes has been approached by a radio station. We met with them today, and I am happy to report that it looks like the partnership will move forward. There are still meetings to be had, and I am unsure how large this will get, but we are thrilled at the prospect of reaching so many children. Within the next few weeks I will have the details, and Emily and I should be on the radio one day. I will be sure to post all the information ahead of time so everyone can tune in. We are just so excited about this, and are anxious to share the details with you.

Without further delay here are some pictures from Jude's party. As you can see Emily was a wonderful big sister, and even sported the Elmo shirt for Jude. Elmo is one of the only toys Jude responds to so the party was dripping in Elmo supplies.

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Image and video hosting by TinyPic
Image and video hosting by TinyPic
Image and video hosting by TinyPic

Saturday, September 5, 2009

Thank you for his bday party

Jude's party just wrapped up a bit again, and it was wonderful. We are truly blessed by all the people that are our support system, and all who love our Jude. The day went well, although I feel like I didn't make my rounds enough. Also, I never even thought about getting emotional at Jude's party, but when everyone broke out into a rendition of Happy Birthday, I lost it. I became overwhelmed with emotion, and tears began to form in my eyes. I had to turn around, and walk away for a few minutes. I just felt so overwhelmed and thankful that my little boy had made it to his first birthday, and I knew he would make many more.

I will post more on Tuesday after the holiday. I have lots of pictures, and lots of information to share.

Friday, September 4, 2009

Playing with mommy

Last night Emily, and her cousin had softball practice so we all went to enjoy the fresh air. Jude kept gasping each time the wind would hit him in the face, but he seemed to like it. At one point I took Jude out of his car seat, and he seemed to be trying to play with me. His legs would wiggle, he would open and shut his mouth, and would smile real big at me. In between playing he had a few spasms, and I am beginning to wonder if the increase in spasms isn't the cause for the recent temper tantrums.

Anyway, I digress sometimes Jude plays with me, and sometimes he just stares off. I can call his name, and he won't even turn towards me. At other times he will immediately turn right towards my voice, and give me the biggest grin. Also, last night he was keeping his head up a bit, and I would notice how cute he is. I told him when he learns to keep his head up all the time, he is going to get all the ladies.

To our great surprise all 250 boxes arrived last night for Emily's Smile Boxes. I had originally ordered gable boxes with snowmen, but the shipment was taking to long. Em and I then decided on white gable boxes so we could put her label on them. Mike suggested having her classmates draw pictures on the boxes, but I am not sure I am up to another task. I have my hands a bit full right now. I am actually very pleased with how they turned out. So we will be having a small Christmas cookie party at our house, and inviting people to come help us put all the boxes together. We will then drop these off, and start on regular boxes. Here is the final product, what do you think?

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Thursday, September 3, 2009

oh that temper

Thanks to everyone for Jude's wonderful birthday wishes, it was very touching. His big party is Saturday so I will be posting lots of pictures!! We feel so blessed that we have so many people praying, and supporting our little boy.

Mike has texted me several times today because Jude is being a bit of a handful again. He is still wanting to be held all the time, and will scream if you put him down. In fact it's gotten to the point that if you even move forward from your seat Jude starts to cry. He also cries when we tried to feed him solids, and when administering the NEW medication. We thought we had found a way around his tantrums about the medication because it is no longer liquid, but Jude had figured it out. Again, we are trying to figure out if this is behavioral, sensory, or something else going on. I think we are all waving our white flags though, and ready for the phase to be over. I told Mike that "he reminds me of you". Mike laughed, and said "I know that's what scares me!" I told him it was God tapping him on the shoulder saying, "Remember when?"

I had a wonderful lady email me that works at one of our local high schools as a special education teacher. She has taken it upon herself to contact several local school about holding a drive for Emily's Smile boxes. To our great surprise they have all accepted, and they will be starting to collect items very soon. I am just thrilled with this news. Emily's boxes to put her Christmas supplies in should be in any day. This means I need to figure out when we can have a small box making party. I thought about moving this great task to her school where we would have more room, BUT that means transporting all the supplies. We would then have to transport all the boxes back to our house for storage until we drop them off. Therefore, I decided that our loft will be a great place, and I will hit up a few friends for some long tables because I think this will make the organization a bit easier. I have had an old friend offer to loan us his enclosed trailer for the actual drop offs. We will be traveling to Cooks, Children's, Scottish Rite, Dallas Medical City, and a home for abused children all in one day. Thank you for all the wonderful donations, and helping us reach this Christmas goal. Emily is very excited about putting these boxes together, and making the delivery.

Have a nice night!

Wednesday, September 2, 2009

Happy Birthday Baby Jude!!!! 9/2/09

Dear Jude,

Happy birthday to you! Happy birthday to you! Happy birthday darling baby, happy birthday to you!

A year ago today your daddy, and I were checking into the hospital knowing we would hold you in our arms very soon. At about 5 months pregnant mommy was told there may be a problem with your tiny precious little brain. The doctors told us there was no guarantee if you would be normal, or have issues that would adversley affected your everyday life. Mommy and daddy went through a lot of emotions because sometimes that happens with adults. Sometimes we think that because we don't do naughty things we deserve to have everything easy in life, through hard lessons we find out that isn't true. We finally decided that no matter how you were born we would love you with our entire hearts, and nothing less.

After 12 hours the doctor handed you brand new into mommy's arms, and I loved you instantly. Even though you had just arrived, and not been cleaned I saw your daddy beam with smiles. We knew we had our baby Jude, and no one would ever take your place. Your sissy was so excited to see you, and her little face just shined when she held you for the first time. We were told that you looked 100% perfect, and we thought our prayers had been answered. Then three months later your tiny little body began to seize, due to the severe issues that horrible stroke caused in your brain. We rushed you to the hospital only to be given the most devastating news. A crew of doctors, social workers, and a pastors told us that your brain was not in "medical terms"... normal. We were derailed, and we felt at a loss. We heard the words brain bleed, schizencephaly, cp, and death. I am assuming that any time a person is told their child may not outlive them they feel....well, ripped off. Our thoughts turned from toys, rooms, cribs, and more to other issues that focused around therapy, and sickness. We were in and out of hospitals, and in and out of emotions from despair, to acceptance. I wondered how this could happen, and mommy questioned what she could have possibly done in her pregnancy to cause this issue, I felt so very guilty about something I never did. I bawled for hours wondering if I had missed a step, and hurt you somehow. Then I was angry Jude...I was angry! I walked through the world wondering why people didn't stop their lives for you. I honestly felt angry that people were able to move on with their lives when you may never make walk, or may never make it past early childhood.

Soon I began to know your little personality, and I began to see your tiny self shining through. I learned your smiles, your cries, and your needs. I began to realize that not all prayers are answered the way we expect them to be, but rather the way they were meant to be answered. For some wonderful reason you were given to our family, and I will forever be grateful. You have taught your darling sister how to be a compassionate, and a genuinely sweet individual. You have taught mommy that I am not always right, you have taught me patience, and that it's okay to let go sometimes. You have taught your daddy that even though you ask for a football player, you may be blessed with a life player.

I thank you for entering our lives, and I can only hope that I will be able to honor your life the way you have honored mine. It is my pleasure to take care of you Jude for as many years as you honor me with your presence. Thank you for all you have taught me this first year of you most miraculous life. I love you with all my heart and soul. You have made mommy a better person, and know I cherish every tiny snuggle you give me.

So as I sit here with my tears falling down my cheeks know they are tears of joy because you are in my life. Today is not about sadness, it's about blessings, love, and laughter!! I love you Jude, always and forever! Thank you darling boy for just being YOU!

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Image and video hosting by TinyPic

Image and video hosting by TinyPic

Image and video hosting by TinyPic

Image and video hosting by TinyPic

Image and video hosting by TinyPic

I want to thank everyone that has read and followed our blog since before Jude was born. Thank you for sharing in our heartache, and our joys. I have been touched by emails from people personally close to us, and strangers/new friends, as far away as China. I want to thank our friends, family, and strangers for their prayers, and continued hopeful thoughts for Jude. I also want to thank my husband for his never ending support, and love when I needed it the most, baby I know this year has been so hard. I love you with all my heart.

Many thanks to my friends never ending line of shoulders, and tissues. When I try to be strong and make it through, you guys sit me down to reality, and feelings I need to face. Sometimes Mike and I are so tired, and sometimes we just want to be ourselves with tears flowing, and we thank you for listening.

Most of all I want to thank my Emily for walking up to her mom and patting me on the back and saying, "Mommy, just let the day go for awhile, everything will still be here tomorrow, I promise" and then offering me a huge smile. Then without another word she just hugs me, and in that instant I can let everything go. Thank you Emily you are without a doubt a little angel walking amongst us.

"Hey Jude!!!!!" ;) I scream it from the top of my lungs, "HEY JUDE", happy birthday baby!