Seizures and more

When Jude went to bed last night he had racked up a total of 14 seizures through the day. I say 14 because those were visibly violent to me, and we could count them. Although, he also kept opening and closing his mouth which is an indication he is continuing to seize, even though we don't see the spastic moves. Jude used to register seizures activity on his first EEG's even when we didn't see anything going on. He is having so many seizures that he is beginning to lose his smile again, and he is rarely laughing. So last night I laid him to bed hoping he wouldn't have any seizures through the night, but he did. If you remember Jude's Depakote was decreased at his last hospital stay. Mike and I believe the medication level needs to be increased again. As I stated yesterday my major concern is that Jude is now losing oxygen, and may need emergency intervention with some of these seizures. That is why the MDCP nurse is suggesting a nurse for Jude during the day. I doubt we will get one because he doesn't have a G button, but they are looking into it. My guess is that if Jude is losing air the neurologist will prescribe oxygen to be on hand if needed. This is all just assumptions though, and guessing where I may not need to guess.

When I look at Jude's MRI the seizures make sense to me because of the clefts in his brain, although they are still hard to watch. No one wants to ever deal with seizures especially in their child. I am positive that the neurologist will eventually want to do another EEG, but we are hoping to put this past next weekend so Emily can have her time she has looked forward to. Speaking of hospital stays, I received the information from my insurance company on Jude's last stay in December. He was there for 5 days, and the total bill to just THEM was over $42,000!!! That isn't even what they billed to Medicaid. That is equivalent to many salaries in America, which makes me wonder what people do who don't have insurance. America needs reform in the amazing cost just to receive treatment. I am SO lucky that we have good insurance, I am not sure what we would do without it. I am also thankful for the skilled doctors, and I know they deserve good pay, but that just seems so extreme. My guess is this was over a $45k stay.

On a more positive note Emily competed in the battle of the books last night. This is my understanding of the whole competition. Basically the kids at her school were given 9 novels to read since the beginning of the year. They were then tested, and put into groups based upon their tests. They then battled between themselves until there was one group standing, and it was Emilys. Those six kids went on to the district championship last night, and after three rounds Emily's team took first place! They were super excited, and I was so proud. There is a picture below of Em with her medal.

Also, I was thrilled to come home yesterday, and see that Jude had gotten his new Tomato chair. He cannot keep his head up in it for long, but it's still nice. Emily wheeled him all over the house last night, and that was really the only time he smiled. It made me happy.

The neurologist just called and wants to see Jude next week. I know Mike has a crazy busy schedule already next week, but this will over rule therapy.

Concerned

Jude had several seizures again last night, and one was terrible. Tears began streaming down, he was gasping, and bright red stripes laced his face. It makes me wonder if Jude isn't losing oxygen during his seizures now. So I put an email into the neurologist today to see what he suggested. I have also noticed that Jude is opening and closing his mouth on a repetitive basis. He did this at three months old, and that's when we discovered something was wrong with Jude. I took him into the hospital letting them know he was opening and closing his mouth, and it was strange. Turned out those little movements were grand mal seizures. So this is also concerning me.

This all happened at a unique time. Jude was re-evaluated yesterday for the MDCP program. They send out an RN once a year to evaluate your situation. By the end of the meeting she told Mike she thinks Jude needs a nurse on top of his respite care. Mike explained that we had talked to someone about that before, but since Jude doesn't have a G button it's not available. The nurse was nice, and said we needed to call our respite office, and talk with them. She explained that she believes the amount of seizures he has will eventually cause a respiratory issue. So I placed a call into them, and they agreed, and are working on the situation.

So we are waiting to hear back from the neurologist, and I will post an update. On lunch I have to take my car in because fate doesn't like me much......smile. Also mother nature is about to dump another ice storm on North TX. I was praying it would miss us, but I just got notification that our office in Amarillo shut down for the day because it's already terrible there. I am still hoping it doesn't reach us. Come on Spring!!!

cough, hack, cough

Jude had a little better night last night. He is still pretty raspy when he coughs, and he began coughing so hard at one point that he threw up pink Pediasure all over Mike's mom. He did take 5 ounces with me, and then went sound to sleep. I noticed that Jude looks very pale, and very thin, so I am hoping he eats more today. He took about 21 ounces of Pediasure yesterday, so he is still taking in plenty. He also slept pretty well last night, and did not wake up coughing as much as he did the night before. Jude did have some seizures, but they were smaller in number, and not as violent. I agree with Candace that we do need to start the Seizures suck blog! It's hard to describe to someone what a seizure is like, and how people surrounding you react.

So prior to Jude getting sick the kids were laying on the couch watching Shrek. I caught a great shot where Jude looks like he is watching TV with Emily. He was actually just facing that direction when I snapped the picture, but I love their expressions. I also think they look a lot alike in this picture.

So ahem, big announcement I haven't talked a whole lot about. Next week I get two days off work, HOORAY! It's a break away, and I need it. Anyway, Emily was invited to go to a pageant in Austin. The pageant is registered to give away the Presidential Service award signed by Obama. Well Emily was asked to turn in her credentials regarding her charity for both the Presidential award, and the pageants community service award. With her awards she is getting an entry into the pageant. She is doing the natural beauty, casual wear, and a few other events. My darling daughter loves to get dirty playing softball, but an opportunity like this is a whole different story. She has been practicing non stop, and LOVES her pretty dress. I literally have to ask her to stop doing turns in front of the TV during my shows. Now, I know there is controversy surrounding pageantry, but Emily loves it, and probably gets a lot of her public speaking abilities from them. She also is competing natural. She said she would love to attend Miss TX someday to and try to obtain a scholarship to college. We will see about that, because mom would be very worn out, but I will support her decisions. Anyway, we are going to have fun, and because it's very important to Em. I think she needs a weekend that is solely about her, whether she wins or not, she just needs a break too. The amazing story is that so many people have come together to make this happen for Em. She has received lessons, money, clothes, and more. We are blessed to have so many great people who support my little girl.

Now the other situation is, we need Jude to get well. I don't want Emily to feel like her weekend was cancelled because of Jude. So we are working hard to get him healthy. This will be our first true trip away with Jude's wheelchair, and all in tow. I think it will be fine, or I hope so.

Mike just texted that Jude only took two ounces this morning. I hope he starts eating more, and we can limit the seizures today.

It's Croup

Well mama Jenn has diagnosed Jude's issue as Croup. What is Croup? http://en.wikipedia.org/wiki/Croup. How do I know this? Because Emily had it, on more than one occasion. Jude is not running a fever today, he is very stuffy, and he has that distinct barking cough. The cough gets better after he sits by the hot shower in his little Tumble Forms chair. The issue also got better yesterday outside in the cold air, two indications to me, it's croup.

Jude doesn't aspirate, or as of his last swallow test he doesn't, and he is able to get deep breaths in after the steam had settled around him. I think he has a simple cold, caused by allergies, that turned into Croup.........same route Em took as a child. You know, that's one of the first times I have been able to correlate my children's childhood experiences.

So he had a total of ten seizures yesterday, and after I wrote my blog he did in fact go sound to sleep, and stayed that way. Well, stayed that way until 2am, and then he woke up with that nasty croup cough, and started crying. I put him in bed with me, until he fell back asleep. I then placed him back in his bed, until he was afflicted with the cough again. That morning I woke Mike up, and he said he was suppose to go get his mom to watch Jude today. Mike is still not feeling well, and he had an appointment in Denton for Jude that he had to make. So I texted and told my boss I would be a little late. Mike left early to get his mom, and I was able to stay with Jude until they got back. I know Mike's mom will sit with Jude as long as he will let her hold him, and that made me feel comfortable enough to leave for work.

Hopefully this will pass soon, and his seizures will drop. I really think it's because the croup was coming on that the seizures picked up.

At a loss?

So far today, Jude's seizure toll is at ten. Several of them have been violent, and I am just at a loss. About four Emily, Jude, and I traveled to my friend Linda's house to pick up her dress for her big event in two weeks. While we were there Jude got very upset again, and we gave him some children's Motrin. He calmed down, but before he did he had a horrible breathing episode. It sounded like his lungs were filling with fluid, and I have to admit that I panicked. I took him outside so he could get the cool air into his lungs to open them up, and to hide how scared I was. I was on the verge of calling 911, but Jude soon starting coughing. Whatever was in his lungs quickly diminished, and he began breathing normally again. Emily, and I both calmed our fears, and went back inside. He then had not one, but two seizures. UGH! I felt terrible that my friends had to be exposed to Jude's struggles, and see how difficult seizures are. Linda's daughter is pregnant, and I knew this affected her greatly.

I am now watching Jude closely to make sure that he is not developing a lung infection. He is not running a temp, and he is not wheezing anymore. I am not sure what triggered all this, but I know my allergies are terrible, so maybe that's a factor. He is also still teething. All I know is that I was SCARED!

I have given him his Depakote for the night, and I am hoping that he goes to sleep soon, because I think he needs it. Also, mama needs a glass of wine, or a hot bath, because it's been a day for sure.

Hell of a seizure

After I fed Jude this morning he seemed comfortable, and then suddenly started crying out of control. He was crying like something was hurting him so I grabbed the Mylanta, I took off his hand splints, I did everything I could think of. Suddenly, he went into a full blown horrible seizure. He was turning red, jack knifing, and tears were streaming down his face. It was as if he knew it the seizure was about to strike, and it lasted way to long. I was worried!

Luckily it went away, and now Jude is asleep. It was a scary one, and I didn't like it one bit! I know he didn't either.

feelings

My friend Fleck came over tonight, and I honestly really needed some girl time. The house was still bustling with Emily's lessons, Jude crying, Mike whining about being sick, the dogs barking, and more. Somehow a woman is able to tune everything out with a nice glass of wine, and a great friend. She even brought me some amazing clothes she doesn't want anymore. Granted I would normally feel strange, about accepting them, but she has great taste, and I was thankful.

I read over some of my friends blogs tonight. I read through issues with seizures, and other medical problems. I read about medications, sleepless night, and more. As much as I could relate there were many times I couldn't relate, because every situation is different. I felt at a loss for words, and I just buried my head in my hands. I want to help, but I am unsure how. My husband always tells me that I cannot save the world, and to not be so naive. Although, no one wants to see life pass them by, and their days in life filled with medication issues, and a sick child. Despite how wonderfully hopeful I sound in my blog, along with my fellow special needs parents, it's still a struggle both emotionally, and physically. Even though we have began to adapt, I emotionally (at times) still find myself reeling from Jude's situation. I am trying to find the balance between the wonderful blessed feelings I have, and the struggle with everyday life. I will eventually find it.

I think this was all tipped off because when I got home Jude got upset. I was holding him for awhile, and then set him down. He giggled for a bit.........but I am not sure at what? He didn't have anything near him, and no one was chatting with him. Later I was holding him on the couch, and I noticed how long he is. Jude is ..........well...........becoming a toddler. Mike looked at me, and said "I wish he could walk". We have faith he WILL walk, but again you deal with the feelings in the present that Jude cannot currently walk. Jude's brain does not communicate with his body to tell him that his legs, do work.

So everything is an acceptance, and moving forward. It's dealing with emotions, and medications. I want to help the world, but I cannot. I cannot change that my friends daughter is hurting, but......I wish I could.

Friday!

Well now Mike is sick, darn! He is at home today....miserable, but still taking care of Jude. MDCP called today because they said it's time for Jude to be re evaluated. I am not sure what all that entails, but I am sure it's like the first time we were approved. It doesn't seem like it's been a year, but maybe it has. It's amazing how fast time flies.

Jude is still having his seizures, and they seem to be taking a bit of what he has learned away. This is aggravating, and I hope he regains his skills again. He is sleeping again so that's wonderful, and yesterday he ate a lot of pediasure. His neurologist called and informed us the cold hands/feet issue is circulatory, and there isn't much they can do for it. So we will just keep a watch on him.

Mike keeps mentioning how his little "Hispanic" boy is looking more like his mommy. Jude's hair is becoming lighter, and lighter. So little Emily decided to show us what Jude would look like with her hair color. Keep in mind Emily was born with black hair, and it changed to this color, so who knows what Jude's will look like in the future.

Have a good weekend all. I feel like I haven't been able to blog much, because work has been busy. I will take a lot of pictures this weekend, and blog a bunch on Monday

Updates

So I cheated a bit last night. I was so tired, and ready for a bit of me time that I put Em, and Jude in my bed. She had actually asked to fall asleep in my bed, and I snuck Jude in beside her. I knew he would be comforted she was there. It took them all of five minutes to look like this.


I then snuck off to the living room, and enjoyed some time to myself. Jude did better last night, but he still woke up about midnight screaming. Mike picked him up so I could sleep before work, because I was exhausted from the night before. I asked Mike to give Jude some Motrin, and after he gave him that, and some Mylanta, Jude fell right back to sleep.

My aunt came today to give Mike a break for a bit, and therapy came again today. Mike had called and said that Jude had a very long seizure prior to ECI arriving, and he seemed very distant during therapy. My understanding is that the seizure was rather violent. I hate that we are starting to frequently travel the seizure highway again. Jude is still taking some solids throughout the day, and is drinking his pediasure.

The weather may be playing a factor in Jude's seizures.

Sleepless in Texas

Wow, what a night we had in our house! When I got home Jude seemed to be doing well, so I gave him a bath, and then fed him an 8 ounce bottle of pediasure about 7:30. He then got very very fussy again, and was crying so hard that he looked scared. He would have several cluster seizures in a row, and then cry again. I could see his tiny bottom tooth barely poking through the skin, so I again attributed this to teething. I then gave him some Motrin, and he fell fast asleep at about 9:00. The only problem is... Jude normally wakes up and takes another bottle, and his medications before bedtime...........but he wasn't stirring. We tried several times to wake him up, and Jude would have no part of it. Luckily with the Depakote it's a level medication, and his blood levels should remain the same if he only misses one dose.

Jude woke up about two am with a seizure, and crying. It took about thirty minutes to get him back to sleep, and this seemed to be an hourly issue. We did this ALL night long, and finally about 5:52 I got him to sleep, and I thought we were home free, but he then woke up about 30 minutes later. I was exhausted, he was exhausted, and so was Mike. Jude would sleep while he was in the bed with us for a bit, so Mike placed Jude on his arm, and we all settled back in. Then Emily got up......sigh.

As I was leaving for work Jude was laying on the bed laughing, and Mike was about to give him his bottle, and medication. I told him jokingly that he was a real stinker that he cried all night, and was laughing in the morning. I then left, and I knew Mike had a big therapy day ahead of him. Jude had speech, and PT today at Our House, and then ECI is coming too. I am not sure Jude will handle the therapy well without sleep. In fact, Mike sent me a picture text that said "Hi mom I am in the car all ready to go to therapy", he was sound asleep.

Anyway, so nevertheless I am exhausted, but you just get used to it. I had a friend ask me if I was okay, because I was a bit distant at the shower this weekend. Let me assure all my friends that if I am every distant, non talkative, etc, don't take it personal, or worry about me. My life is just different now, and I am tired, and have a lot on my mind. Thanks so much for being concerned for me, it's nice to know I have good friends.



Ps ~ As I finished this, Mike called to tell me how therapy went. He said speech was fine, and the Jude was "talking" up a storm for Jennifer the therapist. She said she was very impressed, and has some older children that do not make sounds at all. She said she was very reassured by this. Mike said during PT Jude was angry, and tired. He was impressed with the therapist because she would not tolerate Jude's fits. She would roll him into a little ball, and this would keep Jude from arching, while he screamed. She would let him finish crying, and then they would press forward. I think this therapist is going to really help Jude.

Lots of weekend updates

Although I enjoy being busy, whirlwind weekends can leave me gasping for air. I invite the chaos of my life in, so I have no room to complain. As I mentioned, Saturday we made a smile box drop off at Scottish Rite. This was the first time Emily was actually able to pass boxes out to the patients themselves. We have since decided that we will now make Smile Boxes based upon ages on the patients vs generic boxes for any age. We will make 25 of each age set set upon 1-4, 5-8, 9-13, and 14 and above, or somewhere within those parameters.

Sunday was a combination of emotions. I had hosted a baby shower for my friend Carrie with several friends of mine. I have known Carrie for over twenty years, and she has been a loyal and wonderful friends to me. On the other hand Katy's funeral was that afternoon, and I wanted to be there to say goodbye. Although, I stayed here, and followed through with my commitment to my adorable Carrie, and thought of Katy each time I picked up Jude. Several times I though I would well up with tears, but I held that back until I got home. We never know how thankful we should be for our children until we are faced with a circumstance when we might lose them.

I admired all of Carrie's wonderful gifts, and the day was filled with it's normal "Jenn" fiasco's!! I left early to get the cake, but it wasn't made...........even though I ordered it a month ago. The grocery store had a ridiculous line, etc etc. I rushed home to throw my hair up, and donned my pink Cowboys Jersey. I knew I should wear something nice for the shower, but I explained to my friend that I had to support the boys.........although IT DIDN'T HELP. ugh! We had a great time at her shower, talking, chatting, and enjoying each others company. Soon the time come that we had to leave, and I packed up my stuff and headed for our truck. I had to lift Jude's wheelchair up, which still kills my back, and I wondered if anyone saw. I try to stress to people that this is our normal, so it's okay! It's not really normal though, and I would prefer to be packing up a stroller, vs a wheelchair.

Jude is still going through an issue with crying for about an hour straight at night, I am unsure what the problem is. Motrin seems to solve the issue, but it takes awhile for it to work. His seizures have also increased to where they seem almost constant to me. We will be calling the neurologist today!

I am working today, and due to the holiday the day started off very slow. I am not so busy that I had to take a lunch just to have a break for a few seconds to return some emails, and blog. I am going to post some pictures from the weekend, I hope you enjoy.

Ginger, and Melanie, we have been friends for 20 years, at Carrie's shower.


Emily and her boxes at Scottish Rite:


Em getting hugs for her box:


My family holding Jude this weekend:


Mike helping Jude with head control:

A busy, but great Saturday

My day started early today, but it was worth it. I got up about 7:45 to get ready, load smile boxes, and meet Emily and her dad at Scottish Rite in Dallas. It's his weekend, and he was more than willing to help out. Emily had a chance to meet some of the patients of the hospital, and give her boxes directly to them. There were some cases that touched home, and we enjoyed putting some smiles on their faces. Prior to passing out the boxes, Emily took me around the hospital showing me artwork, and different statues that she liked. She pointed out one piece that was rotating, and we read the information regarding the piece. Neiman Marcus had a contest for the patients to come up with a Christmas tree of their dreams. A young boy came up with a tree made solely of prosthetic arms, legs, hands, and wheels from wheelchairs, and crutches. His submission was chosen, and they created his masterpiece. It was humbling, and amazing to see.

After the hospital I ventured home to meet my aunt, and grandmother. My grandmother was in from Missouri, and my aunt had brought her over to visit. They then watched Jude for a couple of hours so Mike, and I could go to lunch. It was a wonderful lunch, and we really enjoyed ourselves. My aunt was able to get Jude's bottle down him while we were gone, and she said Jude was a perfect angel. Mike, and I joked that Jude would probably start screaming as soon as they left...........we shouldn't have joked.

So later in the night Jude started a screaming rampage that just would not stop. I gave him some motrin because I thought it may be his teeth, and after about an hour he calmed down. I was spent, and I understood why Mike gets so frustrated during the day, and why it's so easy for him to lash out. A child screaming straight for an hour, or even more makes your head throb. Once Jude calmed down I fed him a 9 ounce bottle, and he fell fast asleep. Jude's seizures have still increased a bit, but that could be due to the teeth issue. He still has the three teeth buds, but they have not broken the surface yet. Emily was such an easy teether, but Jude has had such a difficult time.

Friday, a wonderful lady came in to write her insurance, and she began talking about her special needs child. I think it's amazing sometimes, how people of the same circumstances are drawn together. I have recently met another mom that has helped me with diapers, advice, and more. I find comfort in their words. I wish they were not in the same circumstance, but I appreciate all their words of wisdom.

Anna, and her family will be in my prayers tomorrow as they lay Katy to rest.

updates, and more

There are days that I wish I could just make the world stop. I want to crawl back into my warm bed, and fall fast asleep without worrying about time. I think today was one of those days, most likely because it's been one of those weeks. It's been a week of rushing, tragedies, and busy days at work. Based on my blog yesterday I can now tell you that it was my friend Anna that lost her daughter katy. Her daughter suffered a stroke around 6 years old, and she was a survivor like Jude. We had become friends through a pediatric stroke network, and had big plans to meet the beginning of February. I was heartbroken when I received a text from Anna letting me know Katy quietly passed away in her sleep. Not only did my heart hurt for Anna, but you cannot help questioning your own child's mortality. It's so selfish, but you just cannot help it. I spent the better part of the day yesterday in and out of tears. I finally gathered myself up, and shot into help mode which is my way of coping. Anna emailed me today that she had lots of items for Jude, and again the tears welled up. Not only because I wish her situation was different, but that she would think of Jude right now.

So my tears yesterday opened a huge window of discussion with Mike and myself. Staying together in a tragic situation is extremely tough, and we battle sometimes. We talked about how the question of Jude's health is something most people don't deal with, and it creates stress on us. I think we need some more personal time together, and I plan on making that happen.

Jude has LOTS of therapy appointments, and evaluations at the house today. I am afraid he was turned down on the nursing care. The head nurse explained that without the G button Jude doesn't qualify. She said his cluster seizures are some of the worst seizures out there, but that the insurance doesn't recognize them because he doesn't lose oxygen. Good old catch 22 issues. So my aunt is going to come in once a week to help care for Jude for a few hours, and then we will find someone else to help out too. I have had several emails about watching him.

I did receive a phone call back from Jude's neurologist office about his ice cold hands and feet. They are explaining that this is a circulatory issue, but most likely caused by his brain damage. They are unsure if it is dangerous, and the doctor will want to see us when he gets back from vacation. So we will see what he says. Since this is not something new, I am hoping this is just a non threatening condition.

A LOSS

I am devastated!! A friend I have met through a pediatric stroke group lost her daughter. She woke up, and her daughter had just stopped breathing during the night. It's a mothers worse fear realized. I am not going to mention her name yet, but my heart is just aching for her. I had just spoken to her, and made plans to meet up in February. I was so looking forward to seeing her, and meeting her beautiful family.

I am torn apart today at work. I know her life will physically be easier, but emotionally I am not sure how you make it through this, but I know she will. She is a strong lady, and I know her beautiful angel will be watching over her always. God Bless my friend, you are in my prayers. I am here for you, and my heart goes out to you.

Ice cold hands

I have been so busy at work with our new rates I have had little time to blog. Today Mike happily reported that Jude has been eating a lot of solids. This is such great news for us, and I hope he continues this trend. Mike said he is a bit leery because Jude is doing so well, and he is so used to getting rug pulled out from under him. Mike seems a lot better now since Jude is eating.

We had so many people come forward, and offer to help with Jude. It was very touching, and we are still working on that. My aunt has said she wants to come one day a week, but I would like to have someone else a day as well. We are grateful to our friends, and family that are there with us. The Scentsy parties people are throwing for me, are really helping a lot, and it's much appreciated.

Jude received his hand splints yesterday, and he seems to like them. He kept giggling while they were on yesterday. We have heard differing opinions on the splints, and I guess time will tell how they will work for Jude. ECI is also trying to get Jude another stander. We are very grateful to Jocalyn for allowing us to use Kendall's, but now Jude will hopefully have his own loaner. Jude is about the same milestone wise. He cannot sit, he coos, he doesn't try to walk, or crawl. I am hoping that someday he will. He stills smiles a whole lot, and scans the room to find me when I call him.

One issue we are having is Jude's hands and feet are ICE cold when he sleeps regardless of blankets, and the heater. I have heard differing opinions on this issue as well. I have read that this is common with people with brain injuries. I have also heard it can be an indication of an issue with blood/oxygen flow, and an indication there may be a problem. Any other special needs moms out there know any answers?

Here are some pictures of the kids last night in my bed. I love how it seems they are both looking at the camera. I know that I just happened to catch Jude as he moved his head towards me, but it still warms my heart.

and a fear comes to pass

Tonight Emily came downstairs to tell me that she has decided she would like to do smile boxes for animal shelters, in addition to her smile boxes to the hospitals. They wouldn't be individual boxes, but just one big box filled with food, and blankets. I told her we could talk about this idea of hers, and then maybe move forward. She pretty much told me in no uncertain terms, that his was a deal breaker if I didn't help her out....lol! I sometimes wonder if I have the strength to keep up with my tiny philanthropist, but I will try my best.

Another issue Em brought to me tonight for the first time was, "I feel like people love Jude more than me". It made me swallow hard because I constantly worry about the effects of Jude's condition on Emily. She has grown up very quickly in the last year and a half, which I didn't want for her. When my mom passed away, and other situations arose I grew up from 7 to old enough to fend for myself very quickly. I think some of this has to do with the additional responsibilities Emily has had placed upon her regarding cleaning, and organizing, but some I believe is really emotions she is feeling. She mentioned that my blog is called the "Diary of a baby", not the "Diary of babies". I explained that this is due to the fact that she has thankfully, never suffered a stroke. I then explained that I started this blog with the sole purpose that I would truthfully pour out every raw feeling I had about Jude's situation to educate others. She also told me she had a dream that Mike left us, ARGH, my heart broke. I explained to her that we are a family, and even though times can be tough, we are always a family first.

Later in the night she said "Mommy, this song reminds me of our family". I put her ipod ear piece into my hear to listen to "Lean on me". I smiled and said "that's a pretty good song for us". I guess sometimes when we hope our other children are not affected, they still are. Emily has had a lot put on her at a young age. The only thing I can say is that I had the same, and I think the tribulations I endured turned me into the person I am today. I hope the same will happen for her, and I help Em in anyway I can. She has all I can afford both emotionally, physically, and more. I have sought after counseling for our situation, and she seems to be very well adjusted. I guess it's perfectly natural for any girl, or woman to wonder about their worth. I question mine, I am sure you do too. I just want to make sure Em never has to question my love, because mine is here to stay.

So little Em, because I know you read my blog. I love you with all my heart, you are my darling little girl. You are more amazing than most adults I know. You have a compassionate heart, a patient heart, and an accepting heart. Most people are lucky if they just get one of those traits, not all three. You have done more by the age of eleven than most people will do in their entire life. You have held mommy's hand when you shouldn't have to, and you make my heart happy. I know you will go so far in life. You will achieve your dreams, because you have the drive to make them happen. Although if for any reason you are ever sad I will feel very honored to still wrap my arms around you, and tell you I will love you forever. I love you forever, and ever!

Therapists, toys, and throw up

I have a lot of thoughts swirling around in my head today so I am hoping I remember everything I wanted to blog about. First off Jude saw his speech therapist on Wed, and she was very encouraged that Jude is taking some solids. Jude doesn't take them all the time, but when he does he will take about 9 bites. He still chomps his teeth down on the spoon, which indicates low tone, and a poor reflex in that area. We are hoping he will outgrow this eventually. She was also thrilled to hear that Jude is making more sounds like ah, agee, ma, and da. He doesn't say them all the time, or in the right format, but he is saying them.

He also saw his vision therapist this week, and she brought Jude a little light up xylophone. As you can see it does catch Jude's attention for a second before he turns his head away.


Emily and I sat down last night to talk about the future with her smile boxes. We are currently putting together 50 boxes for Scottish Rite in Dallas. She is hoping to actually meet some of the children, and give the boxes directly to them this time. Since they are a specialty hospital with clinics, this is more feasible than other children's hospitals. Emily is still to young to visit ill children in other hospitals so therefore she drops the boxes to the child life coordinators. It's also in the best interest of the children to be kept isolated from outside young visitors, and we understand this. So we are hoping she will be able to drop the boxes next Saturday to Scottish Rite at an event they are holding. In addition Emily and I talked about the company's ultimate goal. We would really like to see the boxes supplied to all children's hospitals in the US, and Canada. It would be wonderful if at some point we had a facility that drop shipped them, and the hospitals could place a "re order" when their supply got old. We also want to include items for the parents like debit cards for parking, and lunches. It's so expensive to stay a week at the hospital with your child when you factor in meals, gas, and parking. We were contacted by a radio station, and Emily and I are still crossing our fingers that comes to pass. This would make Emily very happy, and me. My ultimate goal was to someday work with charity work, and what better way to accomplish that than with my daughter. I told Em last night that it would be amazing if we could someday open a special needs camp in the DFW metroplex. That's a really lofty wish, but it would be wonderful!!

Jude is doing better, and I think the cause of his nasty cold was the new appearance of three small teeth. He is sleeping very well at night, and seems to be eating a bit better. Although, last night he got so upset when I sucked our his nose, that he threw his entire 6 ounce bottle up. Amazingly I sat him up so he wouldn't choke, and Emily dashed to the scene. She grabbed a towel that was on the couch, caught the throw up, wiped Jude's face and rushed it to the washer. Emily is an amazing kid!

BAD KITTY!

So Jude has been sleeping great lately, but I haven't........would you like to know why? Our big huge fluffy ragdoll cat Scooter is an indoor outdoor cat. He is normally the best cat you could ever ask for, even sprawling out belly up to let everyone pet him. Although lately, at three am he comes to my room, carefully climbs up Mike's dresser, and sits and raps on the blinds with his paw until I wake up. I drag myself out of bed, let him outside, and then crawl into bed. About 4:30 am there is a consistent scratching, and banging on my front door which is the same said cat wanting back in. I then repeat the process of getting myself out of bed, and letting the bad kitty back in. This then repeats itself at about 5am, at which time I am exhausted, and full of words for the animal.

You cannot lock him out, and I cannot install a kitty door. I may have terrorist soup tonight sprinkled with kitty.......

not really, but it's a thought!

Some changes

Jude is still coughing up a storm, and his seizures have greatly increased. He is still eating which is great, but he seems to eat later in the day. Mike has kept his frustration with Jude's eating at bay, and even told me yesterday he was confident Jude would take more at night, and he did. From 4pm until 11pm, he can take up to 15 ounces. We just seems to adjust our life around what Jude needs, and wants.

Per my blog yesterday Mike's frustration level has at times reached it's peak. He is doing great with Jude's feeds this week, but it's Jude being sick that's bothering him now. He feels trapped in the house, and I think he feels he has nowhere else to go. In addition to that he says he feels like such a failure when Jude gets sick because he feels he isn't doing his job properly. I try to tell him not to take things so personally, but it's hard for him to listen. So therefore, I am trying to find someone to come in on Tuesdays and Thursdays for four hours to relieve him a bit. Our respite pays, and his mother comes whenever she can, but this will be on top of her help. She is limited on what she can do because of her vision, but is so wonderful with Jude when she is there. If we had someone else there 8 hours a week Mike could get a few things done with confidence that Jude is being watched, and that if Emily gets home she is not alone.

So I was reading a blog yesterday of a fellow special needs mom, and I so related to her post. I actually posted a blog just like hers around Christmas. She had found a box of old baby toys, and it made her sad her son cannot use them. I was walking down the toy aisle picking out gifts for family members, and I kept staring at the baby toys. The toys Jude cannot use. So I began to think about how things change when you have a special needs child. They are bad things, but you do continue to mourn the loss of the child you thought you were going to give birth to.

So what changes?

1. You no longer look for toys that you know every child wants for Christmas. You look for toys that will help your child in therapy, or help stimulate them in some way. In addition you aren't really sure they will ever use that toy, but it makes you feel better buying it for them.

2. You look for clothes that are cute, but are easy to work with. In our house onsie's are still the greatest creation ever.

3. Instead of buying sippy cups we continue to buy bottles, and a normal feeding can take an hour and a half.

4. When it's time for family photo's you have to contemplate what you are going to use in the picture to keep your child's head up. You don't want them slouching over in the picture, so it just requires extra thought.

5. Stopping and running into a store rarely happens because that requires getting the wheelchair out.

6. Going to a baby shower, or a party and hearing mothers harp on organic food, nursing, etc almost because comical, because you would be happy with ANYTHING your child would eat. Also, listening to them rant on their soapbox about other issues is comical because you are just hoping your child isn't in the hospital next week. You learn quickly that it's the simple things in life that matter, and to let a lot go.

7. You learn to let people's complaints about life roll off your back because you know how difficult life can really get

8. Most special needs children like to be held all the time, so you learn to let the laundry go, the dishes go, they will be there tomorrow.

9. A normal diaper bag turns into a rolling pharmacy when you go out.

10. You learn to adapt (not get used to, but adapt) to seizures, and you can tell certain things about your child's health based on the seizures.

11. You become "friends" with the nurses at your local children's hospital

12. You become very vocal about your child's medical care, and aren't afraid to express when you are upset with a physician, or when you are very happy with one.

13. You learn the definition of certain illnesses, and medications that you would prefer to not know the defintion of. You learn their risks, blood counts regarding medications, and how they should be administered. You do things for your child that would have grossed you out before, but hey it has to be done!

14. You learn the meaning of more acronyms for medical assistance, and agencies than you ever wished to know.

15. You pass by the underwear section in your local department store, and you wonder if your child will ever be potty trained.

16. You re-think your retirement because you have a child that will always need your assistance, and you make necessary arrangements in case something should happen to you personally. Goodness knows I have more life insurance than most of my friends just to make sure my sister can always care for Jude in the best possible manner. Although, Emily is saying she will fight for Jude no matter what.

17. You look at your other child, and you constantly wonder how this has affected their life, and if they feel overlooked.

18. When going out you get used to hearing "Oh he is so sleepy, poor thing". No he just cannot keep his head up! grrr

19. You look at other special needs children in a way you never did before, and you appreciate all they can do.

20. Your heart goes out in a way you cannot even explain to any parent dealing with a serious illness, a special need, or a difficult time.

There is a lot more, but that's off the top of my head. This situations have definitely made Mike, and I stronger people, but they are again difficult. It's okay to say that our life is hard, but we do keep marching a long, and our life isn't nearly as difficult as some other parents I know. If you are a special needs mom, feel free to add what has changed in your life, for the better, or the not so great.

On a great note we are getting 50 boxes ready with Emily's Smile Boxes to go to Scottish Rite.


We need your vote

Sickly boy

Ugh, Jude is still sick, and he doesn't seem to be getting any better. His slight croup cough is now a horrible cough, he is so congested, and he doesn't want to eat during the day. Poor Mike gets so frustrated because I come home, and Jude will eat 9-10 ounces for me. I am going to have to get Mike to eventually get a part time job, and get out of the house. I keep trying to convince him that he needs to get out, but I think he feels trapped. He is going to lose it soon if he doesn't get away for awhile. He said he feels like he is in the movie Groundhog Day, and I so understand where he is coming from. I am at such a loss sometimes because there isn't much I can do at work, except worry. I am just ready for everyone to be well already!!! Come on 2010, we need a good year!

Last night when I got home, after I fed Jude, Mike was holding him up like Jude was standing. Jude had both his feet firmly on the floor, and was doing so well holding his head up. I was amazed at how tall he is! I guess I never notice how truly long he is because I don't see him vertical.

Anyway, I put a call into the doctor to see if I could get some medication for Jude. I am hoping they don't call him to go back in. The co-pays, and the constant visitation to the doctor's office is exhausting.

Here are some more pictures from the holidays

Jude fell asleep after I got him out of the bath:


Hoping one day he can keep his head up! Like his longjohns?


Sporting his new haircut! Well sleeping with it anyway


Bigsby!

Desperate Housewives

Last night Mike, and I watched Paranormal activity, and after being very disappointed with the movie I went downstairs. I wanted to take some time to really put some heartfelt emotion into my blog. I feel like I have been lacking my true self lately because I have been so busy. So I settled myself on the couch, andpoured out my feelings, my thoughts, and many emotions you have heard before. I cried about Jude, and I was happy about Jude. Then suddenly "Desperate Housewives" came on, and I stopped typing. Mike came downstairs to find me a snotty crying mess because of last night's episode.

What was so great about a drama filled hour of TV? They did a "flash forward", and there sat Lynette with a disabled child. I watched her bawl in the laundry room to her husband telling him that she doesn't understand why they were chosen to have a special child. I watched her cry out to him "why? I feel like I am being punished for something, but I don't know what". I then heard him scold her and tell her she needed to see the potential NOT the problem. OMG, had this show READ my blog, because it was like watching a mirror image of our life. I then admired how she got into therapy with her little boy. I cried even harder when he used his cane once he was older, and limped into the kitchen asking for a sandwich. Lynette told him he should be thankful he isn't in a wheelchair, and to make the sandwich himself. She gripped the sink tightly as she heard jars drop on to the floor. She was gripping the sink because she was holding herself back from helping him. I can only imagine how proud she was when he had actually completed that sandwich. She just told him that she bet that was a great tasing meal! In addition she worked and worked with him, and watched him graduate. It was so touching. Felicity Huffman did a great job portraying a mom to special needs, and the show got a star from me last night.

Of course, I picked out that her disabled baby could keep his head up, and mine cannot, and that he didn't have a feeding tube, etc. Nevertheless I was still impressed. I no longer needed to blog last night because my emotions had been spent in crying, but crying in a good way. So therefore, I decided to share the show with you guys today.

I still have pictures to share, but I am super busy at work.

The holidays come to an end

The end of our holiday vacation is drawing near. I guess we all wish we were independently wealthy, and could just stay home all day. Since we aren't it's hi ho hi ho off to work we go tomorrow. I enjoy my job though, and since we are coming out with new rates I will have lots of work to do.

Jude is doing a bit better, but still has a horrible cough. He is going through "holding withdrawals" though. I like to hold him a lot, and this can cause issues during the holidays. When I leave Mike has to get stuff done, and Jude gets upset he isn't being held. So today I am trying to give him a bit of space, but he is having no part of it. The good news is he is eating much better today. I ran to the store, and got him the hospital like nipples only "fast flow", and he just ate a 9 ounce bottle in about 15 minutes. He also ate half a bowl of rice with banana's. I pray that Jude will continue to increase his like of solids, and therefore take in more calories. The more calories he gets the more energy Jude has to put into therapy.

I could re-cap my 2009, but it was a lot like 2008 so I will refrain. Plus, since I keep up with this blog everyone already knows what our year has been like. I have a whole lot to be thankful for, and a whole lot I would like to forget. So we march forward with hopes that 2010 will be an incredible year. I have a few mini vacations planned, which I am really looking forward too.

I hope everyone had a wonderful holiday. On another note, one of my best friends had a tragedy this New Years Eve. Her dad was lighting a mortar, and it blew up in his face. The results were horrible, and we are praying he pulls through. A few prayers for Kel, and her dad would be appreciated.

I will post some pictures tomorrow, until then have a wonderful Sunday.

Happy New Year

Last night we went to my cousins house for a little while, and visited with my other cousin from out of town. It was nice, but we didn't stay long. I was still getting over my cold, and Jude was very cranky. We were at home celebrating the New Year in our pajama pants, and then went to bed. That's right people, we are party animals, but it was actually pretty great.

Late Last night Jude woke up again very cranky!!! He was really acting like something was really bothering him. We gave him some Motrin, and he seemed to calm down. This morning he had a horrible diaper, and is sleeping constantly. This is exactly the routine he followed the last time he came down with the intestinal infection. So we gave him some probiotic this morning, and we are watching him closely.

We took down our tree this morning, cleaned up the house, and now I am relaxing. I still need to hit the grocery store, but other than that we are staying in. I am going to let Jude rest as much as possible. I wish everyone a wonderful New Year. I am hoping our year is full of good news.