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Wednesday, November 11, 2009

Speech Therapy

This is Jude at speech therapy today, he did very well! The speech therapy will not only help him talk, but help him learn to eat solids. He was more interested in the ABC wheel toy they had, and he even would attempt to turn the wheel.

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"NO DAD, I don't want to go in!!!"

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Um didn't you hear me? I said I don't want to be in this chair!!!!

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Oh wait, I remember this lady, she is nice and has that cool vibrating cheek thingy!! It goes up my arm bump bump bump, and on to my cheek!

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Okay I am happy now, bring on the musical toys!

Notice he is not strapped into the chair. Jude does a fairly good job of holding himself up without being strapped in anymore. Maybe one day Jude will be able to say Mama and Dada, that would be lovely!

Tuesday, November 10, 2009

A doctor report

A couple of good reports for a change! Jude had his regularly scheduled neuro appointment today, and we were thankful because as I stated before, his seizures have increased. The seizures are still nothing like what they were prior to when they were being controlled by the Depakote. He has 5-6 spasms a day that last a minute or two, trust me that is very manageable! That's a big difference from the multiple yelping screaming 20 minute seizures before. Saturday though I lost track of how many small spasms he had, and I was concerned. Granted Saturday was a very busy day, and we might attribute this to over stimulation, but I really don't feel like that was the issue, because Jude seemed very content.

So while visiting the neuro today Mike explained to the dr, that I have noticed a recent development with Jude. While watching TV, I said, "look Jude" and pointed towards the tv, and he looked.......and repeated this several times. So last night at Emily's softball game I did the same thing, I pointed and said, "Look at sissy" and he looked. I then switched arms and he looked the other direction, which is amazing because due to the stroke he rarely looks to the right. Mike said the doctor listened with interest, and then took out his medical device that makes a tone when hit. He watched as Jude quickly turned towards the noise in both directions, and Mike said he seemed rather impressed. He then noticed that Jude's muscles are increasing in tone, and that Jude was trying to move. Jude is dragging himself along the floor if he is on a place that has the perfect traction for him. In addition Jude tries to sit up, but cannot quite make it. He is also gaining more control over his neck. These are all very positive signs! Mike told me the doctor said "Don't get me wrong your son will be delayed, but these are great strides he is making".

He then said that Jude's medication levels are around 92, and that they don't like to go over 100 to 120. He did agree though to increase the medication some due to his weight to try to control the additional seizures. This concerns me, but I am sure the doctor knows what he is doing. He said we must be on the look our for any type of bruising because this will be an indication that his medication levels are to high. The doctor believes that Jude is making progress because of the addition of the pediasure, and the additional calories. He said that despite the additional seizures Jude looks the best he has seen him. That is wonderful news, and I only hope Jude continues to progress. He commended us on the additional therapy, and said that now is the time to push Jude, and not to let him get lazy. We will do that for sure.

Work is a bit slow, but I am selling a lot of life insurance which is wonderful. I believe everyone should have a life policy in force to protect their family. My Scentsy business is also doing well. I have a show this Friday, and Sunday. I also have a fundraiser I was going to Saturday morning, but due to the increase in Jude's seizures I may not make that. Mike needs a break from the routine at times. I am however sending a large amount of fundraiser information for all the girls attending the fundraiser, and each person that purchases will provide a 20% credit for Emily's Smile boxes. Speaking of her boxes we have enough small objects left from the holiday boxes that we are going to try to make a few packages tonight for our local hospital near our house. That way if they get a few kids in for minor issues then they will receive a box.

So I am getting back to work, but it is reassuring to hear that Jude is doing well. Sometimes our minds play tricks on us because of what Jude has been through. I think we question if we are truly seeing progress or if what we are seeing is just some new move disguised within a seizure.

Monday, November 9, 2009

Seizures, and traffic

I had an extremely busy weekend, and now I am exhausted today. I planned two Scentsy parties, not knowing we would have 3 softball make up games. In other words I planned just the perfect amount of events so I wouldn't be overly tired, and then fate intervened and messed that plan up. It actually turned out to be two games because the girls lost one, but now we have another game tonight at 6pm. Can you hear me sighing loudly? I am leery of entering softball again next season because the make up schedule has been a nightmare of a ride.

So yesterday Emily went with me to my friend Ginger's house which is about an hour away, and we held a Scentsy party. It was great fun seeing her, and meeting her friends. Ginger and I were best friends in high school, and inseparable at the time. She is still my closest friend, and I can tell her anything, at any time. She is the person you can call at four in the morning, and she will answer just to listen. I wouldn't do that, but it's still a good way of explaining what a great person she is. Anyway, the party went wonderful, but the drive home was ANNOYING! I left near seven because I was trying to avoid the Nascar traffic, I learned the hard way to never get entangled in this mess. Well guess what? YEP! I came over the hill and there were fifty million red tail lights, and I just sighed with disbelief. I sat on that highway forever, and it turned out that not only was it the Nascar traffic, but a nasty horrible car wreck that caused the issue. I told Emily not to look at the grotesque scene only to hear her shout "Oh no mommy I LOOKED I LOOKED", and then she covered her eyes. We finally made it out of the mess so I could walk into the house grumbling under my breath about how the city needs a better system regarding the race traffic. I honestly, have no idea who's idea it was to create such a spectacular arena outside a TWO lane highway!! I truly believe that the people that live in the surrounding neighborhoods should have stickers on their windows to allow them to pass. In addition, my child was having a full blown seizure in the back of the truck, and there wasn't anything I could do. I thought about getting out of my truck, and screaming, but I figured that would just land me in jail so I refrained.

Jude's seizures greatly increased this weekend, although he seemed to be in a great mood. It was a very odd combination, and I am wondering what's going on. Tomorrow he sees his neurologist so we will be able to evaluate the situation better. I can assure you that another hospital stay, and EKG is awaiting us in the near future.

Friday, November 6, 2009

Nascar is here vrooom vrooom,ugh

Well I live close to the Texas Motor Speedway which means when Nascar hits my town twice a year I have about a 150,000 uninvited guests raiding my territory. I really have to laugh at it all, and I know they are enjoying themselves, so other the traffic I have little issues with it all. Although, this was the first year they were racing cars at 3am preparing for the big race on Sunday, I was a little miffed. The said racing was early Thursday morning, and then last night Jude decided to race in his playpen all night long. If it wasn't Jude making noise, it was something else, so I am sleepless in Dallas today.

Jude has to give blood today because he has a doctor appointment next Tuesday, and they need to check his levels, and liver. I hate that Mike always has to take him for the dreaded needle poke, and listen to Jude cry. Mike seemed pretty upset by it all last night, and there is little I can do to ease the pain for him. I did take Jude to bed with me last night so Mike could have some quiet time upstairs. I feel like if he gets some quiet time at night then he can regain his composure a bit. I guess we all need to press our reset button.

This morning on my way to work I was listening to Kidd Kraddick in the morning , as usual. They were airing their Kidds Kids trip live, and we were listening to a talent show the children put on. We heard a great rendition of a show tune, a great imitation of Taylor Swift, and about how someone danced so well. Then there was a little boy with cerebral Palsy whose sister wheeled him up to sing, and she explained he had really been practicing. He tried his best to sing in tune with the Rugrats song, and I, of course, lost it. What go me even more was when Kidd said while he was singing they looked over at his 16 year old sister who was crying because she was so proud of him. Reminded me of Em, and it pulled on my heart strings.

I have a very busy weekend ahead full of make up softball games, and Scentsy parties. I am working my hardest to earn a trip to Hawaii with Scentsy. I have never been, and the idea of lush trees, and blue oceans sounds might tasty!!! Be sure to check out the holiday line: https://jennortiz.scentsy.us/Home

Also, many prayers to the soldiers who lost their lives at Fort Hood yesterday. I hate that it happened, I hate it happened in Texas, and I hate that there is such violence in the world.


Thursday, November 5, 2009

A christmas smile box

Yesterday I received the information about the little 5 year old Noah who is coming to the end of a two year battle with cancer. Reference here: http://www.snopes.com/inboxer/medical/biorkman.asp. I am sure many of you received his requests for Christmas cards. Well I took his request home to Emily who was very affected by his illness. As usual she just looked at me with upset eyes and said "but why?". She then carefully decorated a smile box with tons of Christmas stickers, and we filled it full of Christmas items. In addition Emily wrote him out a letter, and referenced a picture on the back of her letter. When I flipped it over I found the picture I drew for her when I was on bed rest with Jude. I knew how much it meant to her to give up, so I just smiled at her. This is what she wrote on the front.

"Dear Noah

I want to tell you Happy Christmas. I'm Emily, you probably already know that from my handwriting, and misspelled words, but I wanted to write you a note saying well, Happy Christmas. I also wanted you to have this picture on the front, and the back. I sent you a smile box, and it has Christmas stuff in it, I hope you not only like it, but love it.

Love Emily"

Simple, and to the point. She never once mentioned him being sick, getting better, many prayers, etc. I asked her about this and she just responded "Why remind him that he is sick, he already knows". Kids are so smart sometimes.

Judes therapy went very well, but it was a massive slap in the face that Jude is VERY delayed. He still did well though, and I look forward to attending more sessions. We saw the speech therapist yesterday, and she worked with Jude on strengthening his muscles in his mouth. If she is able to strengthen these muscles more then he will be able to eat better. I never knew speech therapy was used for nutrition as well, but it is. I will take pictures at his next therapy session.

Wednesday, November 4, 2009

Halloween pictures, and more

I am going to share all my pictures today vs a long blog. I will write more tomorrow though because Jude has speech therapy today, and I actually get to attend. I am very excited about going to see him, and meet his therapist. It's right by my office so I am ducking out at lunch to get to spend time with him. I will let you know how it goes.

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Emily and the witch that greets our trick or treaters

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Em and Jude getting ready to go

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The monster in the box Mike made, yes it opens and closes , and has smoke

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Our yard at night time

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Em and Jude at the entrance of the haunted cemetery

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The cemetery!! You should see it at night time. The kids love it!

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All tuckered out. She loves her brother so much!

Tuesday, November 3, 2009

A quick update

Good afternoon everyone. I am sorry I have not updated with the Halloween pictures, but my husband has taken off with my memory card. I hope to have those posted very soon. I do have a bit of news on additional progress with Jude. He has decided that he likes to eat mashed potato's, without a fuss. Also he is turning towards my face when I pick him up. In other words when I pick him up he will turn his face to look directly into my eyes, and smile. This only lasts for a few seconds but it's wonderful to see him doing this. The other night I actually went and laid down next to him smiling at him to see if he could actually see me and respond. It took awhile, but he finally smiled real big and turned his head quickly.

I have been told the reason he turns his head is because of the CVI, and my image is distorted. The distorted image can become confusing because his brain wants to process the image correctly, and it become overwhelming for him. He is such a sweet baby though, and really loves to be held. Although his little hissy fits have increased as well, probably because he is getting older, and can demand more.

Emily and I have a fall festival within our neighborhood this weekend. We are setting up a smile box table to accept donations, and I have a Scentsy table to promote my product. We have some large beanie babies that will not fit in the smile boxes, and we are going to give them as prizes at Em's table, for a small game she is hosting. We thought this would leave a lasting impression on the children, and then they would remember her Smile boxes.

If you haven't been to www.littlefacesphotography.blogspot.com, please take a second to check our and follow Tiarra's blog. She does several littlest hero shoots in DFW, and she is such a great person. Since her shoot Mike is very fired up about photography again, and had littered my loft with large lights, backdrops, and cameras. Mike took the picture of her kids at the top of her blog. He has extensive education, and experience in photography, and even flew to Spain one year, to film the running of the bulls. Someday I will have to post his pictures from that trip, he has such an eye for things we would never see. Anyway, Em is his guinea pig tonight for a photo session, and I am anxious to see how he does.