Wednesday, June 30, 2010

Emmy helps out

I have been very busy at work, and had little time to blog. Jude seems to be better today, and is again keeping his medications down. His nurse is going to be able to come back tomorrow, and we are just thrilled about that.

I wanted to share some pictures of Jude, and Emily. She had a pallet on her floor, and is always so great with Jude when he doesn't feel well. She let Mommy and Mikey watch our True Blood episode while she watched Disney with Jude. As you can see he got very comfortable.




Tuesday, June 29, 2010

Another update

So far Jude has kept all his medications, and food down today, so we are very thankful. He threw up last night late in the night so we are still watching him, but he does looks better. The nurse counted 5 serious seizures today, and up to five spasms an hour. She is keeping track of anything that is concerning, which should help in Jude's further evaluations.

The neurologist called back today, and we went over all of Jude's symptoms. He agrees that he feels this is medication related, and has changed the way we administer the medication. Rather than 2ml in the morning, 1 ml in the afternoon, and 1 ml at night, we will reverse the order giving him the larger dose at night. He said it's very possible that Jude has a small tear in his esophagus, but generally those issues will heal on their own. He instructed us to watch him carefully, and if the problem persists to take him in. We also approached the pupil reactivity, and discussed it in length. He said there are about a "billion" reasons why his eyes could be having this issue. He tends to think it is due to the increased seizure activity Jude has been experiencing. He said if it were another stroke Jude would be having additional symptoms. I am unsure what additional symptoms I would be looking for? I have noticed he is keeping his head more to the right, but he did this when he was about three months old, so I am not to concerned. I will continue to watch him, but I will trust the neurologist that there is nothing to be overly concerned about. Mike said he is going to put a call into the eye doctor, and I think that is a reasonable thing to do.

As long as Jude continues to eat well, and does not vomit anymore, we will relax a bit. Tomorrow Jude has therapy, and if he is up to it he will be present, and working with his therapists. Our nurse will return next Tuesday, and I know we will be looking forward to seeing her. I think we all felt a bit safer with her here, and Jude seemed very happy when I got home from work.

Update

Mike has called, and updated me a few times today. Jude slept until about 10:30 today, and Mike had to wake him up. So that means he is late in getting his medications, and starting his eating for the day. As of 2pm Jude had taken 6 ounces of Pediasure, and 2 ounces of water. So far he has kept his food down, and we are praying this continues.

The nurse is with Jude today, and she is being very attentive to any issues. She is writing down every seizure, every spasm, and every indication of a spasm. So far Jude is having an alright day, but we are still being precautious. We have already agreed that if Jude should vomit again he is going into the ER. Mike, and the nurse have administered the Miralx which should help Jude go to the bathroom again. We will be looking at the color to make sure there is no signs of blood. I know that sounds gross, but I promised to be open in my blog. Someone mentioned food allergies, but Jude only takes Pediasure. The doctor doesn't seem very worried about this being a possibility. I really think this is from the increase of the Felbatol combined with his teething, and it's creating more issues. Our main concern is avoiding another battle of medication induced pancreatitis.

Mike has noticed that Jude's pupils, are reacting in weird manners to light. They are not reacting like they normally do by decreasing in size, etc. This will be something we bring up to the neurologist. I am still waiting on a return call from the neurologist to see what he thinks about Jude's current situation.

We are well versed in knowing when to go to the ER. For right now I believe Jude is doing well enough to be at home. If he shows any signs of continuing to have issues we will go in right away. I know he is more comfortable at home, and we want to keep him there is possibe. Although, we all know his health comes first. I am very glad we have the nurse there watching him.

Monday, June 28, 2010

Throwing up

Jude is still throwing up violently. If he doesn't stop by the morning, he is going to the ER. Mike, and the nurse will be taking Jude in the morning. He is also still having dark stools which are a serious concern to me. There is no way it takes four days to get 1 bottle of chocolate pediasure out of his system, when he has had SEVERAL dirty diapers. We gave him some natural medication tonight to replace the good bacteria in his system. We went through this issue with the CDIF, but Jude seems a lot more alert than the last time we found ourselves in the hospital. I guess that is why I feel okay with waiting until the morning.

I am also going to call Emily's old pediatrician tomorrow to see what his thoughts are regarding taking Jude as a patient. I love Jude's pediatrician, but I think he feels held captive by a hospital that is very limited. He cannot just send Jude "over" to the ER if he feels it's warranted. He also never orders bloods levels, sonograms, swallow tests, etc. I feel like Emily's pediatrician might be more experienced in this level of care. He does work for the Cook's network so this may help. He is the one that caught Emily had a water born parasite from swim school when every other well educated doctor were at a loss. I am also concerned Jude's pediatrician was one of the people that contributed to the loss of his nurse. Luckily they ruled in our favor, and I actually ENJOYED reading the verdict tonight in detail. The hearing results came in the mail, and it was very lengthy. The officer seemed rather miffed that they signed off on the fact the "parents" could be skilfully taught to manage Jude's medical issues. The hearing officer said "well they need a skilled nurse to teach them these things", and labeled Jude's condition fragile, and able to change sporadically. We have 60 days of an approved nurse, and I PRAY we don't have to go through a heavy qualification.

So I texted my boss tonight, and explained if Jude goes in to the ER, then I must get Emily to the dentist by 2:30. I will have no one to take her, and we already cancelled once because of Jude's vomiting. I also explained if it's serious I had to leave. It's strange how when you have a medically dependent child you manipulate your schedule like a well oiled machine with work, and home. It just has to be done. The way you shift your priorities has to be carefully thought through.

I think this is either some serious teething with additional issues created by the prior phenobarbital use (causes hardened gums). This could also be a medication issue, a virus, or again the small tear in the esophagus. It's strange how we become so educated in possible diagnoses.


Zzzzz, nurse, and photo's

I am so tired of being so tired! Jude got up about 3am last night, and was up and down after that. He had several seizures, and just seemed uncomfortable. On top of that I have an issues that's causing me pain so I couldn't sleep anyway. I am dead on my feet at work today, and I am not even trying to hide it. I am hoping I can get out of here a little early today.

The nurse in take is the morning, and she may start this afternoon, but if not today then tomorrow for sure. Right now she will be at our house each Monday and Tuesday for ten hours. Once school starts back up then she will spread her hours out through others days during the week. I know that Mike will be thankful she is there. Jude threw up all over Mike and the floor again this morning, and Mike is at his wits end. He called me at work so frustrated, and telling me he just doesn't think he can do this anymore. It's such a sad realization that Mike gets so exasperated with Jude, and that his days all run together. Hopefully the nurse will help remove some of his stress. There is little I can do from work, and I do have to work, or we don't make it. I understand Mike's frustration, and how trapped he feels. I know it's like Groundhog day at my house sometimes. We love Jude with all our heart, but being a daddy that stays home can wear a man out. Mike doesn't always handle everything in the best way, but many of us don't.

On Saturday, and Sunday Jude had some very dark tarry stools. We are hoping it's the chocolate Pediasure he had on Friday night, but I am growing a bit concerned. I am unsure how long it takes for Pediasure to leave your system, and Jude had several bowel movements. I am going to think this is nothing, but I am worried his excessive vomiting has caused a small tear. On another note, there is some good news. Just has had a lot of tummy time lately, and is working very hard on moving. He can scoot around his blanket......which lands him on the carpet a lot, but he is moving. He seemed very interested in the little scooter board Mike had made him. Although, the wheels are very close to his fingers, so it's back to the drawing board for Mike. Jude is also make more progress at trying to roll again.

This weekend Mike had two photo shoots, and I think he was thrilled to get out, and do something he loves. He worked with a friend of mine who has a little girl, and a special needs son. We got an amazing photo of her son in his walker, a profile shot. My friend mentioned how they rarely get photo's because they have a hard time finding photographers that have the patience to photograph special needs. Mike wants to sign up with Littlest Hero's, and to help people obtain the photo's they have wanted so badly of their family. I have created a fan page of Mike's photography on facebook. If you get a chance stop by: http://www.facebook.com/#!/pages/Fort-Worth-TX/Mike-ortiz-Photography/130589006974629?ref=mf&ajaxpipe=1&__a=8

Friday, June 25, 2010

A little update

Well it's been nine days since the introduction of the increased medication level. Yesterday was the mark of Jude having some issues with it. He has slowed down on eating again, is vomiting, and restless. He threw up so hard last night, that he was dry heaving for awhile. I felt just terrible for him, and for Emily who almost sympathy puked. He has done better today, and Mike has gotten Jude to eat some. I am hoping he will have a good weekend.

Monday we complete the intake for Jude's nursing. We have switched providers because during the time Jude was on nurse hiatus Charlotte went to a new company. I am hearing that this should be a seamless transition, and I hope that is an accurate assessment. That means Charlotte should start on Tuesday. She is currently with another family until school starts, so until August we will only have her on Mondays, and Tuesdays. It's a start, and we are all very thankful. I feel so relieved someone who is qualified to make medical decisions will be watching Jude on a continuous basis. Jude has avoided the hospital since December, and we are hoping to make that last.

I took these last two weekends off in June from Scentsy. So this weekend we are concentrating on Mike's business. I have mentioned before that he is a photographer, and he has been wanting to get his business off the ground. With Jude's situation everything has been put on the back burner, but we are getting him up and going again. We have two photo shoots this weekend, and I know he is so excited to be doing something he loves again. Here are some recent shots he took of my friends girls.









Thursday, June 24, 2010

WE WON!

The hearing officer ruled in our favor. We got our nurse back!!

I don't think this update needs anything more than that news. I am thrilled. I am so happy I want to leave work and celebrate!!!

Wednesday, June 23, 2010

Thank you for pointing out I am fat

Since I got home from work Jude has been sleeping. Guess what that means? That since I am already delirious from lack of sleep, I may not be functioning by morning. In other words.........my little boy will be up all night. I hate to wake him up tho because I feel like his frail body needs all the sleep it can get. So I have cooked dinner, cleaned the dishes, done laundry, written a blog, and taken a very long bath. AMEN sista, that's a lot of stuff to accomplish in one night. Normally Jude will not allow me to complete all those tasks.

My darling friend Fleck saves up all her great gossip magazines for me to oogle after she is done with them. She recently dropped off an arm full, and I have been slowly making my way through them. Let's glance at the Lifestyle May 10th issue. It caught my attention because it seems they could tell me how to get a bikini body by Memorial Day. Since we are past memorial day, I thought..... let's shoot for the 4th of July. Earlier today I was looking at my pictures from two years ago and felt a twinge sadness. My friend Linda assured me that I am still skinny, but I still sighed at the pictures of my tiny thighs, and little butt, so I felt this article was sent with purpose. Here it is was below my nose, THE secret to being scrumptious again.

I began to read the article with intensity. Eat more, lose more. Work out more, lose more. 20 minutes of high intensity training, combined with fat burning resistance exercises, and nutritional eating. Now I got annoyed, well no joke darling Kim Kardashian.........if I had the time to work out I WOULD. I worked out religiously prior to having a child with special needs, but now I barely have time. Twenty minutes now equates to one amazing bubble bath for me, spending time with Jude, and well just relaxing. If I had my own personal chef to fix me tasty white fish combined with fabulous salads......then I would be tiny too. If I could afford my own personal trainer then I guess Lifestyle would be visiting me on the beach dressed on my "Revenge bikini" too. Right now they are not beating down my door, I wonder why? Their loss!

What really killed me was the comment, "I recommend getting a spray tan and one great bikini wax" WITH WHAT MONEY?. Thank you Mrs Parker, but if I have time to get a pedicure then my word I am destined for the red carpet. A bikini wax? Really? All I have to say is thank you Schick for providing me with my cheap tools to do the job of a $100 Brazilian wax. Plus, there isn't a spray tan place around my house, I guess I could use my husbands spray rig? Don't even get me started on the "can you guess the beach bum" page. The one you labeled "Our advice, Less American Pie, more squats for this actress". Really? Honey if her a$$ looks like she has been divulging in Apple Pie, then mine looks like a Texas hail storm just passed through.

Let's not leave out their amazing menu they left us to follow. It starts with fill two low fat free whole tortillas with 1 scrambled egg, salsa, etc in the morning. Really? I have been up since 4am. Who the heck is going to offer to make these for me, cause honey I am not making them. I will opt for the low fat Turkey D'lights in the frozen food section that takes 1 minute to cook. Not sure what is in them, but I can afford them, and they seem healthy. I only wish I could keep up with our local farmers market, by both traveling to get their, and afford the produce. Not to mention their "Oatmeal sprinkled with two tbsp of walnut, and sweetened with Truvia. What the crap is a Truvia? It sounds like an aunt I used to have.

Look I am all for being healthy. I was once so tiny that my friend, and I received an invitation to the Playboy party at Treasure Island in Vegas. Not only were we invited, but we ended up getting Playboy passes to every major attraction in Vegas. It was an amazing experience, and one I will always treasure. Although, I felt like something was missing. People did not like me for who I was, rather they liked only what they saw. You know what I love? That no matter how I look, my husband thinks I am the most gorgeous creature to walk to Earth. I have learned that I won't ever be "large", and will always be healthy, but I don't have to be bikini worthy. Life is worth so much more than bikini's, personal chefs, airbrush artists and more. So find your true inner self whether they be tiny, medium, or large, and embrace yourself for who you are. Love yourself, and be kind to yourself. I have the hardest time..........with being kind to myself.

Sleepy

After finally having a few restful nights, last night was horrible. Jude woke up about 4am screaming. It was strange because he never opened his eyes, he would just scream, and arch his back as far as he could. I hate when he contorts his body, because it looks like he could break his neck because of how violent he becomes. I literally have to use all my strength to keep him close to my body so he doesn't hurt himself. This went on for hours until he finally fell asleep about 6:50. After that my alarm went off, and I just looked at it with despise.

Jude also experienced several seizures last night, and just seemed very out of it. He smiled once when I told him my aunt was coming to see him this weekend, but other than that he was very withdrawn.

Not sure what's going on with the little man.

Monday, June 21, 2010

Monday




I just wanted to take a second to share some pictures to show you how big Jude is.


Jude was great for me this weekend. He gave me a bunch of wet slobbery kisses. He was very smiley, but suffered a lot of seizures. He is also not eating as much, and I have approached Mike on the G button. I think it's time to look into it, but he is very resistant, and I understand why. Jude has an appointment with the GI specialist in July, so we will see what he says.

Sunday, June 20, 2010

Happy Fathers Day

Jude had a seizure that was so horrible this morning, that I was crying right along with him. I am still at a loss as to why this new medication as stopped all his small spasms but has created monster seizures that are sporadic. I am hoping as we increase the dosage we will see less, and less of these horrible episodes. In the olden days people that were epileptic were labeled "possessed", and you can see why when you witness these seizures.

Our wonderful friend Gina came over last night, and watched Jude while Mike, and I went out. We went to have Sushi, and then we went to the Movie Tavern to have some drinks, and watch, "Get Him To The Greek". It was a great night, and it was nice for us to get out together. I think it relieved some stress, and we were able to just enjoy each other.

I would like to say Happy Fathers day to my amazing husband. I understand that your life is so difficult at times. I know it's hard for you to be a stay at home dad, but you are amazing. I can understand how difficult things are for you sometimes, but you always pull through. Jude, and Emily are so lucky to have such a great person in their lives. I love you very much. Anyone can be a father, but it takes a special soul to be a daddy.

Friday, June 18, 2010

Friday

It's the weekend, and I am so happy. I plan on sleeping in tomorrow, and then spending a much needed night away with my husband. Our friend Gina is coming over to watch "Gone with the Wind", and hold Jude for us while we are out. Emily is with her dad this weekend so she will be doing her own thing.

Yesterday I had the "Mirena" ......... well er um .... installed. Since there are men that read this blog, I will spare you the details. If you are unaware of what the Mirena is, then look it up. The out patient procedure is fairly easy. I have had two kids so I talked through the procedure, but my doctor informed me at the beginning you are either fine with it, or a "gripper and screamer". Luckily I handled it fine, but what I like to call the after shocks, rather stink. I felt pretty bad yesterday so when I got home Emily was very inquisitive as to why I felt so blah. I felt she deserved to know the truth so I explained to her what I had been through that morning. To my surprise Emily became very upset. She told me with a pouty lip, "but I thought we would have another baby". Um WE? .... WE? I said, "Well honey, we cannot afford one right now, and without a nurse we have little help with Jude". She got a little teary, and said "but I wanted a baby sister". This really just left me speechless, and I was wondering what to say. I assured her if things change the "situation" is easily reversed. She seemed okay with this. I guess we are all a bit emotional at times about babies.

Jude is pretty needy tonight, and wants to be held constantly. Currently he is on his tummy, and he will be okay there for awhile. I am watching him on his tummy trying to use his knees to crawl. I really think that someday Jude will find a way to move himself about. His legs work great, it's just his torso, and neck that fail to move in the right direction.

Jude did not have therapy today, but he will resume his normal routine on Monday. He will also start his increased dose of Felbatol. I will let everyone know the results. We will also be setting up his swallow test soon.

Thursday, June 17, 2010

The Nurse

I am not posting an update today other than the below, because I need your full attention.

They make a decision on our nurse by next Thursday. We have one week to pray our hearts out they rule in our favor.

We need her back, without going into details just trust me, we need her back

Wednesday, June 16, 2010

Is it Wed?

Mike just called and informed me that Jude has only eaten 8 ounces the entire day, that's not good. Not sure why he is refusing to eat, but we all know that is what normally lands Jude in the hospital. Since it's only been one day I am not going to worry that much about it...yet.

I was able to break for lunch from work, and run over to watch Jude's therapy today. He seemed a bit "spaced" out, but overall he did alright. He was opening and closing his mouth for his speech therapist, and even ate a few bites of food. Our current therapy regiment is to get Jude to open, push down on his tongue with his spoon, and then pull the spoon out. Jude should then start chewing on the food. Jude was a bit resistive to the physical therapy today, and didn't care for his PT stretching his muscles. The PT plans on coordinating with our neuro, and Allumed to get Jude the proper sleeping system. She said she doesn't believe Jude needs a orthopedist just yet. She said Jude's legs land in a frog position (during the day), and are loose. If they were loose folded in then she would be more worried about constant hip dislocation. Regardless they want to make sure this does not become a future issue that Jude is consistantly dealing with. I agree that it is better to be pro active.

So Jude's eye that was most affected by the stroke is becoming more lazy. When Jude looks at you his left eye will focus, but the right one doesn't. I am not sure that will ever improve, but I know we will need to visit the
ophthalmologist
again.



That's all for today.

Tuesday, June 15, 2010

Dr updates, and more

I currently feel like the cat on the front of the "I hate Mondays" shirt again. A little frayed, my eye twitching, biting my lip, come on you know you can picture it. I just told my co worker that I feel like I keep putting my finger in a light socket. In other words I have been so busy at work that I am just frazzled! Considering she just yelled at an inanimate phone, she is pretty busy too.

So last night when I got home from work, Mike had Jude laying on the floor and his legs on his boppy. I looked down at him, and thought "hmmmm", then Mike came up and said "Yeah why didn't we think of that before." So last night when Jude went to bed we carefully placed his boppy inside his crib. We put Jude's legs on one end, and then laid his head on his pillow.
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This seemed to work for awhile, but Jude did wake up crying with his leg twisted underneath him twice. Twice is better than consistently, so I will take those numbers any day. In addition Jude woke up multiple times last night due to his teeth, but we would resolve that, and he would eventually go back to sleep.

Mike took Jude to the neurologist today, and my son is 37 inches long!!! Can you believe that? The neurologist was impressed with Jude's current cognitive abilities. He said he believes the Felbatol is working, and plans on decreasing the Depakote, and increasing the Felabtol even more. Mike relayed to him about the horrific seizures we have seen, but the doctor believes that is because we needed to adjust that Felbatol to a higher dose, which we have done. The doctor also stated he will help us get bedding to keep Jude from twisting his legs under him in a W position at night. Mike said the Dr's nurse inquired if we have heard from the state regarding Jude's in home nurse, but he told them we have not. Mike said she shook her head, and said they were all very disappointed in this situation, and will work to help Jude in anyway they can. Overall it was a good visit, and we were relieved. The doctor said he is going to delay Jude's MRI until he is three, but we are to schedule the suck swallow test whenever we can. We are going to go directly through Baylor to set that appointment up. This will be more convenient for us since the hospital is almost an hour away, and Baylor medical center is so much closer.

Last night I dealt with pre teen hormones again, and as much as I love my little girl I was resembling the above mentioned Monday cat. Finally after I was at my wits end with her talking back, Emily could tell I was exasperated. So Emily grabbed some sidewalk paint, and went out to relieve her aggression on my concrete.........well and my tree
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Luckily my lovely neon pink tree will be back to normal after it rains, or I am sure the HOA would have something to say about it. At least she was advertising her charity, see below.
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The night air was wonderful, and I think it calmed everyones nerves. Emily came back inside much happier, and then insisted on going to sleep in my bed. I think she just wanted to be near me. Emily is such a good kid, and I have faith she will continue to be.

Our lovely friend in California, Christina has recently done something very nice for our family. She makes regular contributions to Emily's Smile Boxes, but starting last week we all had surprises. First we received a nice brown package labeled "Mr Biggs", and inside it was a cute dog toy. Next Jude got a very cute Zoo toy, which he loves. Then we got a box full of supplies for Emily's Smile Boxes, and next I have been informed are some other items for Emily, and Mike. She is so kind to think of my family. Here is Jude with his new toy.
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So we are pleased with a positive neurologist visit. We will be increasing the Felbatol as stated. We are still waiting on the blood results, and we will be working with the PT to get the right bedding for Jude.

Monday, June 14, 2010

Another update

You get two updates today.

Emily was asked to be in the Kids Swing tournament this year on July 19th, and she gladly accepted. She met the founder of Kids Swing, Ben Sater when they were both announced the Prudential Spirit of the Award winners for Texas. Emily won for her Smile Boxes, and Ben won for creating Kids Swing, a charity that has earned more than $850,000 for Scottish Rite.

When Ben was a little boy he had to have surgery on his fingers. While he was at the hospital he noticed that people didn't have to pay a bill when they left. He asked his mother why no one had to pay, and she explained that Scottish Rite provides free services due to generous donations. From that point on Ben wanted to help the hospital, and has done so in a huge way. Every year he hold a golf tournament, where individuals can support the "kid" golfers. All the proceeds go to help Scottish Rite. Their goal is surpass a million this year, and Emily is helping.

Please consider stopping by her site, and donating whatever you can. http://community.tsrhc.org/EmilyLites

Emily and her friend Ben Sater.

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Weekend Update

So Friday night, and Saturday night Jude had a hard time sleeping again. The Melatonin would work for awhile, but then he would wake up very cranky. Finally on Sunday, Jude opened his mouth, and I saw a bloody gum, and I knew the culprit. Jude is cutting another tooth, and it is really bothering him. So on Sunday I used Orajel, and more to help him with his issues. The Orajel doesn't seem to affect his seizure medications, and Jude normally hates the stuff, but this weekend he was grateful for it. With the increased Felbatol, and the teething solutions, Jude seemed to have a very good day on Sunday. In fact, I was able to position his little Sun in his hand, and Jude liked that very much.


video




Emily's friend Casen came over on Saturday night, and informed us he had seen the new Karate Kid movie, and that it was amazing. I asked him if he had ever seen the original movie, but he had not. I told the kids that it was a requirement to see the original. So on Sunday I picked up Emily's cousin Faith, and we planned on a movie day. We cooked turkey dogs, made sundae's, and settled in for a movie day. The kids had a good time watching the movie, and they had an even better time making fun of our clothes in the 80's. According to them the 80's were about fifty years ago, and they were amazed we all didn't have cell phones. After the movie the kids went outside, and painted our sidewalk with sidewalk paint, it was a good day.



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Jude has his blood taken today to check his medication levels, and he sees the neurologist tomorrow.



Friday, June 11, 2010

Medication

Mike increased Jude's medication like I had told you he would. Believe it or not, Jude only had 1 seizure today.........amazing. I am not sure if it's from the medication increase, or if he is just having a great day. I am assuming it's the medication, and I am so freaking happy!

I appreciate the comments on Jude's leg situation both on the blog, and through email. I am very new to dealing with orthopedic situations, and more. So please be patient with my lack of education on the subject. I am learning, and taking all of this a step at a time.

Now off to a good weekend


Jude's legs

Last night I gave Jude Motrin in addition to his other medication before he went to bed. It seems that added medication helped him sleep, all night long! He only fidgeted once, and when I straightened out his legs, he went back into a deep sleep.

At night Jude pulls his leg up into a W, and this can become painful. We consulted our PT who informed us that this is very common with CP children. She said that since there is no pressure on their feet from walking they have a tendency to pull up their legs. When they do that they keep the bone from forming properly around the ball of the other bone. This can eventually cause hip dislocation. Our PT is getting Jude fitted with orthotics, but I think we might need to take him to see a doctor.

The neurologist called back about Jude's seizures. He said he is surprised to hear that the spasms decreased, but the large violent seizures increased. He explained that he normally sees the opposite when administering Felbatol. Therefore, he is increasing the Felbatol prior to Jude's appointment Tuesday at 10am. He will have his blood drawn that Monday to test for medication levels, and the doctor will check those levels at Jude's appointment.

We will see what the weekend brings with the increased dosage.

Thursday, June 10, 2010

twitterpated!

Jude was up a little after two am again, and was up and down the rest of the night. When my alarm went off at 7:30am I contemplated smashing it into bits, but I decided I would need it again. Reluctantly I finally got out of bed, and as I did I heard Jude's whines ... again. I went over, and grabbed him, and laid him into our bed. He quickly snuggled up to his dad, and went back to sleep again. No one can tell me this little boy doesn't know what he wants, or doesn't want. He is emotional, and has needs, and he wants those needs met. I will never forget the famous terminology used by our first neurologist that Jude would doubtfully progress, and "it doesn't take much to be baby". Maybe not, but this baby knows what he wants, and that's an accomplishment.

Once I got home last night from work I was literally exhausted. I was cranky, I was annoyed, and I wanted some me time. I rarely get in moods like that, but I promise I was in one yesterday. I think it was a combination of exhaustion, huge work stress, and just overload. So you know when you walk in the door, and you get about 1 million questions from your family? Well I reminded myself how lucky I am to have my family, and entertained them until about 9pm, then I was done. I was then blunt about the fact I needed some me time, and I was "overcapacity" or "twitterpated", and twitter would say. My husband cracked up that I used those terms, but I was serious. They kept pushing, so I pushed back, and my husband said he didn't like me pushing back. I explained I was voicing I needed time, and that no one was listening. He said I am the mom, and he was raised that the mom should always be perfect. I replied "Yeah well I am not". I think he was getting a huge kick out of the fact that I was not being my normal Ms Congeniality, so he was going to push me as far as he could. He would argue with a half grin on his face. Finally, he went upstairs, Em went to bed.........and everyone left me with a cranky baby. "Well just fabulous", I thought to myself. I proceeded to have some me time while holding the baby, and typing on my lap top with one hand.

I have not heard back from the neurologist yet regarding Jude's new seizure activity. I am waiting on him to call, but we do have an appointment on Tuesday. So even if I don't hear back right away we will have our answers next week. I am going to make out a list of questions I would like Mike to ask the doctor when they go.

I am going to try to set up a night away for Mike and I think weekend. Just dinner, and a movie would be great. It's difficult since Mike's mom is not available, but I think I found a sitter which is wonderful. Let me also say that Emily has been a huge help since she has been home from school. She is a little blessing for sure.

Speaking of Emily, my friend is determined to get Emily on the Ellen show. Emily just loves Ellens show, and she understands that by being on her show she could really help Emily's cause. Emily's goal is to someday have her boxes in every children's hospital in the nation. This would take a corporate sponser, legalities, and items we would just have to have help with. Please help Em reach her goal. Just go visit this site and join the cause to get her to the show http://www.facebook.com/profile.php?id=1816391851#!/group.php?gid=133176776694475&ref=mf then repost it on your page, and invite your friends. Also, please twitter about it if you have a twitter account. Emily has a good heart, and only want to help as many kids as she can.


Wednesday, June 9, 2010

Last night

Before I left work yesterday Mike called to tell me he was really concerned about a seizure Jude had just experienced. This concerned me since Mike is more rational about medical situations than I am. When it comes to my children I tend to get a bit panicked. Mike said the seizures was very violent, and he noticed Jude's face becoming red and splotchy, and he knew this was a sign of a loss of oxygen. He said it was near the end of the seizure that he finally got the pule/ox meter on him, and it read 86, and heart rate 53. I immediately put a call into the neurologist, but I haven't heard back from him yet. My main question is, why is Jude's heart rate dropping during the seizure when it normally increases?

By the time I got home, Jude was very happy again. He was quietly laying in the floor on his Cowboys blanket looking at his lava lamp. When I came over to him, and picked him up he gave me the biggest grin. He opens his mouth towards me which I have labeled his "kiss". When I picked him up I admired how beautiful he is, I guess all moms do this, but I was in awe. He has the biggest round brown eyes, full lips, cute little cheeks, and an adorable grin. For a second I felt so sorry for him that he cannot sit up, or walk, to show off his pretty face. Then I realized I was not feeling sorry for him, but sorry for myself. Jude doesn't know what he can, and cannot do. He may get frustrated that he cannot sit up, but he is happy with who he is. He is in a family that loves him, and as long as someone is holding him he is a happy little baby. So who am I to "feel sorry" for him, when I should only encourage him to succeed further in life. So I gave him a big kiss telling him how beautiful he was, and he squealed with delight.

It was another up, and down night with Jude. I am not sure what is going on, but I will post an update if anything changes.

Tuesday, June 8, 2010

An early morning

Jude has been up since 3am, and I am exhausted. He woke up whining, and uncomfortable, and then it just snow balled from there. He would get in bed with me, and fall asleep but then I could not sleep. As soon as Jude was out I would move him to his crib, and he would wake up again. He also suffered two violent seizures that woke him up last night. Since he started the Melatonin we haven't had these issues, so I am not sure what's going on. I know it's going to be a long day at work today.

Oh and the hubby slept through it all, he said he has listened to Jude cry so much during the day he has become immuned. Somehow I missed that immunity shot.

Here is a great video I got of Jude, and Mike playing yesterday.......and Bigs joined in.
video


Monday, June 7, 2010

Jude

I could go into how Jude is having such terrible seizures, and how horrible they are to watch, but I won't. Instead I will just let you know that on Sunday...........

Jude.............

rolled over :)

He rolled over at three months, but once his seizures started he never did rolled again. Now at a few months shy of two, he successfully made it over. I am hoping we see him do that again soon.

Saturday, June 5, 2010

Saturday

Jude has been a bit better today. He had one crying fit with me, but otherwise he has been very smiley. I think that Mike, and Jude both need a break from each other throughout the week, and when the weekend comes they both relax a bit. I am currently watching Jude on his tummy, while he is trying his best to lift his head up. He is actually doing pretty well, and he is really cute. Oh wait....He just gave up, and is now looking back at me a bit tired. His little head is laying on his blanket, and his eyes are turned my direction, he looks very cute. I am very proud of how hard is working to make himself move. I think the failure to move his body is part of his frustration, and the reason for his crying. Mike says that during the week Jude seems like he wants to get up, and walk, and is very frustrated that he cannot. He is constantly pulling his body forward while you are holding him like he is trying to sit up. Maybe his determination will take him further than anyone expect? Of course he has suffered more seizures this morning, but we can deal with them. I wonder if the neurologist ever thinks Jude will be seizures free? This is a question I have for him at Jude's next visit.

Emily is with her dad this weekend, and the house is rather quiet. I have Scentsy party later, but until that time I am relaxing in my PJ'S. I haven't done a whole lot today, and it's pretty nice. I wanted to work in our backyard, but by 8am it was already scorching hot. Texas is about to get our first 101 days this weekend. Now let me clarify that I prefer the hot weather over the cold, but I prefer it inside the air conditioning. I know that makes no sense, but that's just me. I am an odd bird I guess.

Next week I need to start thinking about Emily going to middle school. As I mentioned she has been assigned the clarinet in band, and I must look into renting the equipment. It seems my days are rather full, so hopefully this will be an easy process. I am so happy that schools in TX are now requiring students to learn an instrument prior to graduation. They also require at least one other fine arts course, so Emily has requested theater. Imagine that........little miss drama queen in theater, she will knock them dead. She is also enrolling in pre AP math, and science so she can set her course to advanced math in high school. It's really amazing to me that kids start working on a future college career in middle school. I guess I just never understood the dynamics of school, and the levels you have to advance, and neither did my grandparents I grew up with. If I had been aware of all the paths you had to follow I would been more dedicated.

I am planning to convince my husband that we need a night out, and a sushi dinner. We will take Jude with us, and as my husband says "party down". A big party full of sushi, a movie, and my pillow! Sounds heavenly.

Friday, June 4, 2010

And we keep rolling rolling rolling on

Jude has been very cranky with Mike all day today. When Mike would call me at work, I would hear Jude screaming in the background. Hours and hours of a cranky baby will wear on everyone's nerves, I don't care who you are. Luckily Emily got out of school at noon today, and was very willing to play with her brother for awhile. She brought her friend Madison home, and they entertained and held Jude for awhile. By the time I got home Mike was more relaxed, and Jude seemed to be in a pretty good mood too. I am fairly certain that Jude is either teething again, or the new medication is creating some issues.

Jude had two very strong seizures with me today, and they broke my heart. They are so violent that Jude cries out like he is desperate for someone to help him. I clutch his hand ignoring the pain from his hard grasp, and console him with my voice. Luckily the seizures only last a few minutes, but they scare me. We are still going to talk to the neurologist about intervention medication in case it's needed. The good news is that I was able to get Jude to eat a quarter jar of baby food tonight, and he really enjoyed it. He is also took a quick nap tonight, and is more calm. I mentioned that when Jude is two years old he will have another full evaluation, and at that time we will know if any surgery can be done to prevent his seizures.

My future goal is to get Jude to start eating solids while he is sitting in his tomato chair. Currently I hold Jude when he is eating solids, which I have been told is a big "no no". My take on the matter is... that he is actually eating from a spoon, and therefore I could care less where he is completing that task. I will however work on this happening from the appropriate sitting position before I get sent to the principals office. Jude currently only eats a few bites of solids, but anything is progression in my eyes. I know that G button is looming around the corner, but currently our swords are still drawn against surgery. I know this surgery has helped so many of our friends, but I worry so much about putting Jude under anesthesia.

On another note, Emily's last day of elementary school was today. She shed many tears, and hugged many teachers she has grown up with. Teachers provide such warmth and compassion to our kids in addition to their educational abilities. Now Em will conquer a new school, and fight to get them to back her charity like her elementary school did. Luckily the principal knows Emily, and is a wonderful man. I am amazed my little girl with the curly q's has grown up so fast, and I am just thrilled she is such a beautiful, compassionate, lovely young lady.

I am off to administer his nightly Depakote, felbatol, and melatonin. I hate the idea of daily medications, but I am very grateful they help control Jude's issues.


Thursday, June 3, 2010

A graduation, the future, and some realizations.

So I have a lot to say in this blog, so let's see if I can gather my thoughts. I have been struggling and stressing out since last week because I had a job opportunity presented to me. Let me clarify that I love where I work. It's close to home, it's familiar to me, and I have many people insured here that I now consider friends, and not just clients. My boss is pretty lenient with me, and understanding. Although, I do not currently have any retirement, and this scares me. So this job offer was unexpected, and it was really everything I have wanted to do. It was in claims, it had full benefits, and it was a no brainer. However, I stressed out because I am very loyal to people I work for, and I didn't like the idea of change. I also worried because the position would be so far away from home. Not only was it a long distance, they could require over time, and some Saturdays. So after a lot of confusion, concern, and high stress days..... I decided to stay where I am at. If the position were closer to home then I would have considered it further, but it's 44 miles away.......one way! In addition it was just to much to take on right now along with the nurse stress. I decided that there is something to be said for being close to home, knowing your job, knowing your customers, and having time off. My goal is to now figure out some way to save for retirement without a pension. If I plan on staying here, I must think ahead for my family.

Anyway, no one likes to think about financials unless they work on wall street so let's move on. Jude was up again this morning at 4am, and somehow he wiggled his little butt into bed with us again. Once he was in bed with us he was sprawled out, arms up, and asleep. Why does it seem like all children can somehow find their way into your bed, and proceed to give you the most uncomfortable nights sleep? If my shoulder could talk about all the nights Jude has been with us, you would hear some stories for sure.

So today Mike and I were talking at lunch about my said job issue above, and the said nurse issue. During our conversation Mike mentioned that Jude was having one of his "hold me" days, and would not allow Mike to put him down. If Mike does put Jude down then Jude gets so upset he turns blue from crying, contorts his body strangely, and normally winds up in a seizure. This isn't your typical, "don't spoil the baby" by holding him issue. I asked Mike if he thought this was a phase Jude would grow out of, or if this is something we will deal with for the rest of his life. I honestly thought Mike was going to cry, because he got very quiet. He started telling me how the future is something he worries about every single day. He pointed out that Jude would be his issue when he got older, and not mine. He didn't mean that rudely, he was just pointing out that my back can barely withstand Jude's weight now, much less when he is 16 years old. He said that his mother, and others always tell him, "everything will get better". He then said something very poignant, "Sometimes in life, things DON'T get better, you just adapt". We love Jude with all our hearts, but it's a very real possibility we will always be carrying him, changing him, and lifting him into bed. It's a future we were not planning on having, but it is very much staring us in the face. His word "adapt" was the perfect description of a life with Special Needs. Your heart is so full of love for your child that you are very willing to "adapt".

Last night was Emily's 5th grade graduation. My little munchkin is going to middle school, and I am near tears. Emily received a community service leader award last night, and received her little certificate of completion. They didn't have a normal "graduation", it was more of a congratulatory ceremony. The presentation was very important to her last night, and she was beaming with pride. The teachers took time to recognize each student letting us know their favorite memory of fifth grade, what they want to be when they grow up, and what they learned this year. I learned that I am very grateful for teachers that not only teach my child, but love her for who she is. I will miss her elementary school very much!

Here is a picture of my little beauty with her best friends.
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I am going to leave you with a bridal portrait Mike did of our beautiful friend Hayli. Mike is starting out on his photography business, and seems to be doing well. I hope this will take off for him, and give him the much needed boost he has needed.
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Wednesday, June 2, 2010

therapy

Jude had therapy today, and I was able to attend. The good news is that Jude was eating for his speech therapist. He was opening, and closing his mouth, looking bites, and using his tongue. This is very encouraging for him. After speech Jude went to physical therapy with his therapist Kelly who likes to work Jude out. I like her because she pushes Jude to do more, although Jude would rather just lay on her bean bag (the red mark on his cheek is from speech therapy working with his cheeks and reflexes).



While Kelly was working with Jude she encouraged him to keep his head up, and I finally got the nerve up to ask a question. Let me preface this by explaining that Kelly wasn't being mean or discouraging in her response, she was just being honest. I asked, "In your experience with children that have such poor neck control, do they ever get to a point to where they can keep their head up?" I knew by the expression on her face, that it was a "probably not". She just replied that generally, no, but there are some who do find their way, and gain control. She mentioned how there are several of her kids that were older, and still weren't able to hold their heads up. However she did say that she fully expect Jude to roll at some point.

Jude has an appointment with the neurologist on 6/15, and we have lots of questions for him. Jude is getting closer to two years, and that's when they wanted to repeat the MRI. We will also have a swallow study done, and a new EEG. In addition I am going to inquire about the special bedding to help Jude's legs. We are also going to talk to him about emergency seizure meds since the seizures are becoming more violent.

Our new found friend "Reality Steve" wrote about Emily on his blog today. As of five o'clock Emily has received almost $1000 in donations, and has a new pleothra of facebook friends. Please take a minute to check out his blog www.realitysteve.com. Kudos to him for taking a moment out of his life to recognize an 11 year old girl, he is a very neat guy.


Tuesday, June 1, 2010

A seizure and more

We were so busy at work today that I took a step back, and just admitted I have to much going on. I can barely breathe sometimes. So I took the end of June off on the weekends. From now on all my Scentsy parties will be at the beginning of the month, and the end will be reserved for myself, and my family. I will follow through with those I scheduled, but the rest will be in the first 2 weeks of the month. I am so grateful to those that have supported my Scentsy business. It's helped us so much!

When I got home today I was informed Jude has been very grumpy all day. He didn't want to be sat down, and he didn't want to be held either. Jude was at a loss, which normally means he isn't feeling 100%. I had to fix dinner when I got home so Emily held on to Jude for a few minutes. Jude got really upset so I took him, but my touch didn't make him any better. I then went, and laid him down in his crib. I heard a few laughs, and then I heard screams. I ran into the room to find Jude red faced, wide eyed, crying, and in a full on grand Mal seizure. I ripped him out of his bed, and held him close, trying to bring him out of his episode with sweet words. Emily was also next to his side telling him how we will always love him. He quickly recovered from his seizure, but was more uncomfortable due to the pain in his body. I tried to administer some Motrin, but Jude threw up all over me. After I cleaned his little face I looked down, and his eyes were shut.....he was napping. He didn't sleep for long, but it was long enough for him to find a better mood. Soon I will administer his nightly medications with his new added Melatonin, and hope that it helps Jude find a restful night of sleep.

I talked to the neuro's nurse today, about Jude's sleeping issues. The nurse is going to talk to the doctor about the best bed to meet Jude's needs. I also received a call again from the personal care services provided by MDCP. This was a manager, and she did a phone evaluation, and by the end of our conversation she was very nice. She said, "Um I just don't think you need personal care services, I think you need a private duty nurse, and I plan on putting my input in with whoever I can". I just sighed, and told her good luck. She said they just didn't feel comfortable coming in without help from a trained professional. I still think we are so much better off than many others, but goodness it would be nice to get Mike some help.

On a side note, Emily was up for the Build A Bear hero award, she made the top 200, but she did not make the top 25. We are thrilled for those children that were chosen, and kuddo's to the company for providing an amazing program for kids who give back to their community. It is so nice to learn that there are many company's left that still care about families, and children.