H O P E

Last night I was in pure panic, and I really wasn't sure this issue with Jude would have a good outcome. I bargained, I prayed, and I felt very very alone. I wondered how people could go on with their lives when Jude was so sick, and it made me angry. I got texts and became angry, but I DON'T know why, and I apologize. I knew my frame of mind was irrational, but nothing could stop all my thoughts flowing like a flooding river. I wanted to be with my boy holding him tight, and kissing his forehead like I always do. I finally forced myself to sleep for awhile, and Emily had curled up beside me. The next morning, I reluctantly got up for work, and hauled myself, and Emily out for the day. Then I got a call from Mike that after several rounds of the new antibiotic Jude looked better. I felt happier, but I was still really worried.

Tonight I went to the hospital so anxious to hold Jude, and give him little baby kisses all over his face. I walked in to see him sleeping soundly, but cozy. He was still hooked up to the IV in his foot, a heart monitor, a respiratory monitor, and more, but he looked like.......well he looked like Jude. I came over and kissed him, and caught the unmistakable odor of the strong glue they use on the scalp for an EEG. I then noticed all the red marker drawings on his head, his ears, and more, which in my world is a tell tell sign that someone has been reading your child's brain. I knew they had completed the promised EEG, and I knew the results were forthcoming.

Once I got there Mike decided to take a shower..... in the smallest shower ever invented, but he was thankful he could take one. It's a bit like showering inside a coffin, so we exchanged a few laughs about him trying to fit his big build inside the tiny space. While in the shower I had the nurse change Judes bedding, I changed his diaper, they gave him his antibiotics, I held Jude, and the neurologist came by. Mike came out of the shower commenting on how much can happen in mearly minutes, so true. Minutes seem to calculate our entire lives, but only some are given the vision that each of those minutes should be cherished and adored.

The neurologist actually delivered the only good news we have received out of this hospital visit, save the fact Jude is doing better. He came in asking how Jude was doing, commented on how much better Jude looked, and agreed the medication was probably not the culprit for this close call. He then said "The EEG, ... well looked better". I paused for a second, and then repeated what he said rather surprised. Then he explained that he would have to consult his prior records on Jude, but the abnormal brain activity seems limited to the right side of the brain. We know the stroke was worse on that side, so we have always known the seizures start on that side, but never knew they might be limited to that side. He then said the function of Jude's overall brain has picked up, and Jude's brain has "matured". He also said that Jude is gaining mobility of his left side, and that the blank moments Jude experienced prior to this EEG were almost eliminated. WOW!!! I am hopping on the prayer works band wagon!!!

He then asked me to consider a G button, but Mike really feels he can help Jude eat, so we are forgoing that for the time being. He also talked to me about future brain surgeries that may help, but that is a long long way off. I told the neurologist that Jude's intestinal problems reminded me of Emily's stint with the parasite she caught at the local swim school (I Mentioned this the other night). He was very nice, and told me that the parasite I was referencing is one of the hardest things to diagnose, and that Jude's issues were very similar. They could be using the same antibiotic to treat Jude they could have used for Emily years ago. History repeats itself I guess.............amazingly enough Em had terrible reflux. Emily was on antacids for years, and at the time the medical community had no idea those drugs could cause this same issue Jude has. This falls into the category of things that make you go hmmmm. They never isolated the parasite with Emily they just "guessed" so I am wondering if she didn't have a similar ailment. A big thanks to the staff of Dallas Medical City for helping Jude through this.

I held Jude close to me for awhile tonight, and he looked right into my eyes, sucked on his paci, and was happy like he normally is. When I had to place him into his bed he cried for me, which assured me he is feeling better. I, of course, picked him up and held him close. I sucked in every baby smell from him I could, and rubbed his back. I was so thankful he cried because he wanted to be picked up, it was a sign Jude was finding himself. It was short lived because he became lethargic again, but I was still so just thankful. I know that losing Jude is an issue the doctors have told me I might encounter someday, but I am not ready yet. I am not sure I never will be, and I hope I never have to be.

If you have never been put in the situation of truly worrying about your child's mortality then find something positive to do today. Donate to a local charity, and help those that have. I went and picked up baby cereal on my way home, and we are donating it to a local food pantry. My adorable husband said I am rubbing off on him, and he was the one who suggested it, and helping others does help heal your heart. So whatever situation you are in, I encourage you to help someone this holiday season.

The other good news is Mike found out the hospital Jude is at has Emilys holiday Smile Boxes in reserve for the holiday season. There are only 25 there so we want to provide more, but I am still so so so happy we will touch another child's life in a positive way.



Ps ~"From your head down to your toes, you're not much goodness knows. But you're precious to me, sweet as can be, baby of mine. "

a quick update

I am so tired I can barely function, but I cannot sleep. I came into work today because we need the money, but I am leaving early to be with Jude.

Mike called and said that the doctor came in, and they did all agree on the intestinal infection. Jude also has the roto virus, which is probably what Emily had the other day. The combination of the two turned out to cause a huge issue which we found out did indeed cause pancreatitis. They have given Jude two doses of the special antibiotic to get rid of the intestinal issue, and so far it seems to be working. Mike said Jude looks a bit better, and is responding more. We pray he continues to improve, we were really scared yesterday. Jude's enzyme levels also dropped again, but the doctor said she is still not happy with them. The plan is to feed Jude today, and see if his levels rise or drop. They are going to redraw levels tomorrow, and then we will discuss if Jude can come home.

I will update later if I hear anymore once I get to the hospital. I am trying to keep everyone updated. I have had a few texts but it's really hard to update everything in a text, so please don't think I am rude if I respond short. Thanks for everyone's support, and concern.

WE FOUND IT, I think!

On the way home tonight I made the rounds of calls I have not made since we checked into the hospital. I had Emily in the back seat, and we went to Tom Thumb to get the cat some food. I thought how unfair it was that I could walk around the store, while the boys were stuck at the hospital. A hospital room can quickly resemble a jail cell, and you can feel very closed in. In fact, at one point, Emily said "I really need a smile box", and she suddenly remembered the importance of her charity. I told her it was vital we someday get her boxes Nationwide so no child feels so closed in.

Once at home I poured myself a nice big glass of wine, and chilled out in a hot bath. Then I got out.....and my text went off, and per Mike Jude had 101 degree fever. I burst into tears, I had had enough. I am not medically naive, and I have been with ill family members before. I know that elevated liver enzymes, decreased urine output, increased respiratory rates, and a fever, is not a good combination. For the first time I uttered the words via text and I told Mike "I cannot lose my son, I am scared". Mike just text back "I am scared too". I cried my eyes out. Soon Mike called and gave me some reassuring words and I said "there is something else there it's just like Em, there is something they are not finding". (Em had a water born parasite at age 5 that landed her in the hospital for weeks with a very delayed diagnosis).

I didn't know whether to get dressed and run to Dallas, or chill out, and quit panicking. So I settled for calming down, and reflected on the past year. I went into possible reasons for Jude's stroke, but of course there isn't an answer. I did however, this weekend, have a nurse tell me in the ER "I didn't know babies could have strokes in utero?" SIGH!!! I told Dr Riela (the neurologist) about that conversation, and he seemed a bit amused. He said there is a huge controversy within the medical community with "some people" whether kids can suffer strokes. I said "Well then how can they explain the blood shown on Jude's MRI" He said "Exactly, I could write a book and in Jude's situation Schizencephaly often presents with a stroke because the stroke caused the clefts."

So I digress, Mike then called tonight and said "They got the stool sample back, it's CDIF". I had no idea what that meant so I did some research.

What is C. Difficile. It causes diarrhea and can cause more serious medical conditions such as inflammation or injury to the large intestine which can lead to a blood infection, or death.

I read off the symptoms to myself, and thought "Jude has had every one of these, and even the severe symptoms!!! THIS IS IT, they finally found what is wrong!! Now what causes it?" Fecal matter, or antibiotics??? WHAT? How? We are so careful, and he has not been on antibiotics prior to yesterday. After further reading another cause of this is the continuous use of antacids like.....Prevacid, Zantac, and Prilosec, BINGO. So we have been blaming the Depakote, and it seems the culprit (in my opinion) was the seemingly innocent medication that reduces Jude's terrible reflux. I researched on and learned that the disease has a 17% mortality rate, but I choose to believe it's been caught in time. I am sure the doctors will want to do further testing, but I believe we have found our criminal lukring in the corner, and I just want my baby boy to be better now!!! They have started antibiotics, and Mike has taken over as far as demanding parent in resident and is asking for tests, vital signs, and research. The nurse told Mike that Zanatc won't cause additional problems, but we researched and it can, so Mike put a quick stop to it. No more antiacids period, until we know more!

I love you baby Jude, mommy doesn't think the house is the same without you here!!!

Even though I try to hold up well I have been scared out of my mind, and stressed. Thanks to my friends and family that recognized this, and have been there.

Neurologist update

Our wonderful neurologist came in, and leave it to him to just flat out say "Guys we just don't know". He explained that the levels are confusing, and their guess is he has some form on pancreatitis as they stated before. He said tomorrow they are calling for a GI consult to come and see Jude. He guesses they will then do a cat scan to rule out any internal bleeding the sonogram could have missed. He said "Jude never makes things easy", and that is so true. Jude seemed to perk up right before the neurologist came in the room, and he looks a bit better. I am hoping this lasts.

We also had another doctor come in about the urination concern. He said that he isn't overly worried about it yet, but if by morning Jude is not filling his diapers they will begin to suspect his kidneys has stopped working properly. Right after that doctor left Jude thankfully urinated some. It wasn't a lot, but we will take what we can get.

Tomorrow they are also going to do another EEG, and discuss options for other seizure medications. The neurologist said many of those medications carry greater risks so I am sad we are losing the Depakote. Although, if it turns out this is viral pancreatitis it means the Depakote didn't cause it.

So.......I was right, they just don't know. He also said everyone has differing opinions and it sounds like they are disagreeing with each other. So we will see what tomorrow brings. Em and I are about to head home, and my boys will be here. We appreciate everyone keeping up with the blog.

good, bad?

Well I am updating a lot but it keeps me sane. I really feel like we have more questions than answers. The culture for the UTI came back negative today, so they stopped the antibiotics. My major concern is they have pumped Jude full of 3 IV's, and he has had very very little urine output. Since there isn't a UTI, this is leaving me a bit baffled. This seems to be more concerning to me than the nurse, but my thought is the doctor will be very worried about it. Elevated liver enzymes with little urine output isn't good. Anyway, they couldn't get a good view of the pancreas in the sonogram so they are still assuming he has medication induced pancreatatis, and thus explains the pain, and screaming. They also saw fluid in the abdomen which the nurse said can signify liver damage, but it wasn't enough for the radiologist to be overly concerned. I said, "So in other words you guys still pretty much have no definitive idea why his liver enzymes are elevated". She replied "Pretty much" arghhhhhhhhhh!

The good news is I got Jude to take 3 ounces of Pedialyte, and he was so excited to have something to drink. He didn't even care that it was the flavorless kind, he just gulped it down. The bad news is he had another NASTY diaper right afterwards, and he is still very lethargic. My family came up here, and they thought he was medicated, nope he is just that out of it. It's not normal, and as much as I love this hospital I am beginning to think people aren't listening to me. I feel like we are a bit overlooked today because it's Sunday. I am hoping we will see his personal neurologist before I leave today. I will have to take Em home for school, and I have work tomorrow. Mike will stay up here, and then I will come up as soon as I am off, unless things worsen and then I will be up here asap.

So basically I get updates, the updates get changed, I get frustrated, and then I vent on here. Its just a bunch of guessing, what if's and maybes. Thanks for listening.

Jude did finally open his eyes earlier while eating his Pedialyte, and gave me the first half smile in awhile. In addition they have discontinued to Depakote, and I doubt Jude will be back on it. I am hoping the seizures stay away.

Who knows.......

The pediatrician came in and said Jude's liver functions levels dropped, but actually not by much. They were 4800 last night, dropped to 3400, and are suppose to be 200. She said that she believes it's probably medication induced, but they are all a bit baffled. She explained that normally when one level goes up so does the other, but it's only the one that is greatly elevated. She then said the loose stools indicate a viral infection, but the lack of fever doesn't. I think everyone is a bit baffled, but all agreeing they do think he has acute pancreatitis. So they ordered a sonogram just to receive verification, and see if there are anymore issues.

When the nice lady came into the room to do Jude's sonogram he was screaming again, but after some Motrin he calmed down. She then spent about thirty minutes surveying Jude's organs, but spent little time on the pancreas. She spent the majority of her time looking at the liver, and drawing arrows to it. That sinking feeling that I got at my gender sonogram came back. Is it terrible to say that I fully expect them to come in here, and give me some terrible news?? I am so hoping I am just being an over reactive mom, but I don't think I am. I was so positive, and really thought we would come in yesterday, get some fluids, and Jude would be on his way. Boy was I wrong! I just hope Jude will be okay.

I appreciate the calls, but if I don't answer just know I am here alone right now, and it's difficult to get to the phone. I am also exhausted and not in a very good mood, so I would prefer no visitors right now. I will be sure to send updates as I get them, and a few prayers would be great. Pray I am just assuming, and they say all will be fine, and we can feed Jude, and take him home soon.

Thanks

A quick update

Last night when we got settled into Jude's room with his very nice nurse, Mike and Em felt comfortable enough leaving. After that Jude went through his same issues of crying, then resting, like he did the night before. The nurse gave him some Motrin, and even though Jude didn't like that he finally settled down. About 2 am he fell fast asleep, and we both slept until a little after six today. He then woke back up screaming again, and they have since given him some Tylenol. I hate seeing him in so much pain, and I tried everything to calm him down. I rocked him as long as I could, but he would throw his body around to the point that it was very difficult to hang on to him. They still have the morphine on stand by, but so far we have avoided it. After the Tylenol started to work the nurse made Jude a wonderful "nest" with a pillow, and several rolled up blankets. He was finally sleeping very comfortable, but then (of course) they came in to take blood. They couldn't get the blood with the first two sticks, so they finally used a finger stick, and that was a huge mess. It breaks my heart every time they stick his little arms.

According to the nurse Jude's official diagnosis is pancreatitis, UTI, and possible liver damage. They gave him a natural medication to clean out his liver last night, and Jude seemed to handle it well. They are also giving him IV Zantac to help with his GERD. The lovely nurses also brought him a Fisher Price Aquarium for the side of his crib, and he LOVES it. The little toy will calm him down, and he will just watch it until he falls asleep.

I am unsure what the blood tests will show, but I have my guess is it won't be good due to the amount of pain Jude is still in. Jude has not had any seizure medication in almost 24 hours, and the seizures have increased, but are still not audible yet. I dread seeing the horrible jack knifing screaming fits he used to have. I am going to pray for a miracle that they will not get that bad again even without the medication. Jude is also hungry, and they won't let him have anything by mouth due to the pancreatitis. He is holding in there though, and will suck on his pacifier, which seems to soothe him.

I am sure the doctor will be around soon, so I will update more later. Jude is currently resting comfortable on his little nest, and I am hoping he gets a few more hours of sleep, and I am going to try to join him. I am not sure he will go home today like they said, and I am not sure I would feel comfortable taking him home.

All the nurses are commenting on how pretty Jude is, he is such a ladies man even when he is so sick.

One kid up, One kid really down

Last night Jude starting his refusal to eat again, and he was screaming in pain most of the night. I literally slept two hours, and I felt so sorry for him. I finally told Mike I was taking him into the ER because I didn't believe this was a teething issue. Therefore, we got up got around, and then headed out. Once at the ER they initially said they thought it could be some sort of bowel obstruction, which put me in panic mode. They took some X rays, and stated the radiologist did not believe it to be an obstruction. His urine then showed positive for a UTI, and they drew blood to check his Depakote levels. The whole reason I rushed him in is because the seizure medications can cause liver failure, and pancreatitis.

I am afraid his blood levels do show possible pancreatitis. They are flushing Judes system with fluid in hopes that his levels will go back to normal, and this is all caused by dehydration. If it's not then that means his seizure drug that has brought Jude's smile back to us will have to be eliminated.

We are very discouraged, but trying to keep our hopes up. Mike is again very down, and upset. It seems we never can escape the holidays without something happening. Our concern is Jude though, and we will do what's in his best interest. Jude has mostly slept since arriving at the hospital and we have been here about eight hours or so. He will wake up to scream in pain, but then he falls back to sleep. He has had multiple seizures, and the doctors have signed an order for morphine due to pain, if we decide to administer it.

Again, we are hoping for the best, and hoping this doesn't turn into a full blown acute pancreatitis. So we are hanging out at the hospital waiting on Jude's room. I will update when I know more.

On another note my friend Sarah at work had her baby today, and I am just thrilled for her. A big congrats Sarah.

1 kid up, 1 kid down

So last night Mike, and I went to bed chit chatting. I really appreciate the times that Mike, and I have in privacy to just talk about everyday life. Emily was asleep, and Jude was being quiet in his playpen. We chatted for awhile, and then we tried to get Jude to sleep, but he would not have it. Since Jude was not fully asleep Mike offered to take him upstairs so I could get my sacred 10-2 sleep. Mike let me know that Jude went to sleep fairly easily, and then he spent some time playing game up in his "man cave".

A little after three am, the lights in the kitchen flipped on, and I heard someone rustling about.

Me: Emily?
Emily: Yes mommy?
Me: What are you doing?
Emily: I threw up, I am putting my comforter into wash

I wasn't sure if I should be more concerned the fact my child was throwing up, or that my notoriously messy child had taken upon herself to wash her messy bedding. Anywho, I jumped out of bed, and headed to the kitchen.

Me: are you okay?
Em: Yeah I think I just ate to many crackers
Me: Crackers do not normally make you sick

Em then headed back upstairs

Em: Well it's probably no big deal................
HURRRRRRRRRRRRRRRRRRRRRRRRL

Me: Oh dear...............this isn't good....

To say the least the rest of the night included Emily dealing with all the forms of a horrible stomach virus, poor thing! I would run upstairs each time she would vomit, bringing her cold rags, ice water, and pedialyte popsicles, but nothing seemed to help. The last time Emily had anything like this, it was a parasite caught from a local swim school, and she was only five, therefore she didn't remember all of it.

Last night she begged for me to make it stop, but I explained I couldn't help her until the virus had to run it's course. Luckily in only three hours the horrible episodes seem to stop, and I made my way back downstairs...........only to find..........Jude wide awake. I figured I was already awake so I just picked him up and took him to the living room. He was gnawing at his hand so I tried to feed him, and amazingly at 6am he took 8 ounces, I was on Thanksgiving very Thankful.

We all then went to sleep, and slept until a bit before nine when I heard Emily retching again, and this time Mike got up. We decided to give her a bit of bread, along with another Popsicle, and it seemed to help her some. We then cancelled Thanksgiving with the family so no one would get sick, and I headed to the store to hunt a small turkey. The local Albertsons was stripped bare, but the wonderful person behind the counter hunted down a turkey........he found an 18 pound one. I thanked him, but politely said I would take the small roaster chicken left because there were only three of us. I made a nice Thanksgiving dinner, and around 3pm Emily headed downstairs, and looked a bit better. She ate chicken and sweet potato casserole, and then fell on the couch.

Emily is better, Jude is eating, and I am tired, but that's easily remedied. All in all it was a change in plans, but a very nice day with my wonderful family. I will post some pictures of our impromptu dinner on Monday. Many blessings to you, and your families, and I hope you have a wonderful wonderful holiday.

A quick...good update

The neurologist called back, and said he is hoping this is just a teething issue. As instructed we will be continuing the increased dose of Depakote. He has instructed Motrin every 8 hours, and melatonin 3mg 1/2 a pill if Jude continues to run from the sandman. I am very happy to report that Jude has taken TWO 6 ounces bottles. He is such a character because he gives us such huge scares, but then seems to rebound. We have spent our fair share of nights in the hospital, but in comparison with many of Jude's special needs friends he seems to escaped more often from the clutches of PICU, or the epilepsy unit. The 12 ounces are not a huge amount, but it's enough that for tonight he will be just fine. We are also going to try giving his Depakote with level 3 baby food to try to avoid any type of additional stomach upset.

After Thanksgiving they will be scheduling Jude for an EEG, and a swallow study to see if any progress or regression has been made. Jude does have a few small raised bumps on him which I am watching, but he looks a lot better than he did. He also had another terrible diaper, which mommy manned with a mask and tongs, jk, but I did need them!!! I am hoping these loose stools clear up soon.

On another note, Emily started her own little blog to work out her feelings, and I went to see what she wrote. She is just so cute, I guess she read my blog, and is starting her own. http://lifefromakidspointofview.blogspot.com/.

Also, a big thanks to everyone that donated to Emily's Smile box charity, all it took were the words that our donations were running low. We really appreciate all your wonderful help.

We truly want to wish everyone a very wonderful Thanksgiving tomorrow.

Sleepless in DFW

It was another sleepless night in our house. Mike took the first shift so I could get some sleep for work, I tend to sleep better from 10-2 than later. I believe Mike got Jude down about midnight, and Jude then woke up at about 3:30. He was up and down after that, but he would sleep as long as I held him, so I tried to get as comfortable as I could with him in my arms. He still also has yucky diapers, so it's the age old question of is this teething, or life threatening. Is this a problem with the increase in the medication that could signify a liver issue, or pancreatitis? Jude just had his medication levels drawn, and blood checked a few weeks ago, so we are hoping that isn't the issue. He doesn't have any bruising, and no vomiting which is another indication it's not medication related. We will keep a close watch on him as usual, and wait on the doctor to return my call from this morning.

So as we approach Thanksgiving I am reminded of all I am thankful for. I am also dealing with a few issues of being sad that Jude cannot understand what the Macy's day parade, turkey, and doesn't understand Santa Clause. I am however very thankful that Jude is with us, and the light he brings into our lives. I guess it's normal to feel a bit emotionally pulled in two directions during the holidays. I am also very thankful for my family because I would not have made it down this path the last year without their love and support. In addition to that, I have amazing friends who have also been there to support us as well. I have a good job where I am able to support my family, and I have an amazing daughter who has touched many lives this past year. Yes, I have a lot to be thankful for.

** Mike just called and said Jude isn't eating this morning, which may mean we will be spending Thanksgiving in the hospital, but I hope not.

As promised......

As promised here are the pictures from last night.

Em: Mom Jude is hurting me!

Me: {said playfully} Jude don't hurt your sister {thinking to myself how nice it would be if they did have sibling arguements}

Em: Mom SERIOUSLY Jude is being a stinker.

I walk over, and observe Jude in Emily's arms. All of a sudden I saw him raise his little arm and KAAPOW hit her right in the cheek. Then the strangest thing happened, a tiny little smile crossed Jude's face.

Me: Mike............your son is hitting Em, and I think.........on purpose.

So we watch...........


Then KAAAAAPOW,


He was doing this over and over, I am not sure if he meant to, but we still got a kick out of it. Worrying about encouraging naughty behavior pretty much went out the door, because I was just happy to see him doing this.

Then Jude had a seizure............and then he went fast to sleep on his blankie.



He slept for about an hour, and then he woke up and refused to go back to sleep until 2am. He then woke back up at 4:30, so to say the least everyone, especially Mike, is very tired today.



*** Emily's Smile Boxes is running very low on donations, we could really use your help. We are getting several requests to ship boxes to kids in need, and this requires supplies, and shipping. if we could get each person we know to donate $5 this would be wonderful. Please pass the word that people can donate at www.emilyssmileboxes.com, or paypal emilyssmileboxes@yahoo.com.

Take that sissy!

Forgive my sentences that do not make sense lately. Earlier when I was writing my dream blog I was working and I left out several words, and reversed some words. Sad thing is I was on lunch, but still working, so I still messed up. Forgive me?

Tonight I was fixing dinner, and Emily was watching Jude for me while I cooked. I walked over to check on them, and Emily was holding Jude close to her. She told me that he kept "hurting" her, and she swore it was on purpose. I stood back without uttering a word, and she watched TV not looking at Jude. Suddenly I saw him raise his arm and "KAAAPOW" he smacked her in the face, and grinned. Let me point out the importance of this moment. Jude smiled without anyone smiling at him, without anyone talking to him, and without anyone making the famous "kissy" noise. He seemed like he was processing the situation, and he was "playing" with his sister. Well being naughty, but still playing. He didn't hit her hard, but was trying to catch her attention.

Jude has several spasms tonight, and one very violent seizure, which is so upsetting to us. His diapers are still very messy, so as mentioned it's either his teeth, or a bug.

Tomorrow I will post pictures of the "kaaaapow incident". Now I am off for a nice glass of wine.




Ps ~ I input my symbols of my dream into the dream interpreter supplied by a reader. I have found I am either really CRAZY, or able to cope with any situation handed to me.........it's a toss up, yes I am giggling.

Crazy dreams

Before I spill my crazy dreams I would like to share a conversation with my daughter.

Me: So your daddy took you to New Moon, did you like it?

Em: It was AWESOME, it was like Jacob was hotness, and Edward was like so dreamy, then Jacob was like grrrrrrrrrr and a big furry ball of greatness.

Me: Um ok.
___________________________________________________

So I have been having the weirdest dreams lately, and I am sure they mean something. So what are your Freudian opinions? The first dream I have had several times, and it's always the same scenario. I am out of state with various people, and I know I hate to make it back for work in the morning, but I am 14 hours away. Plus, I have to drive myself back and cross a very large suspension bridge. {I am scared to death of suspension bridges, they are just not normal}

Second dream ~ My whole family is on a cruise ship, and we are coming into dock. We are standing on the bow, and we can see all these buildings besides us. We hit something, and the alarm is sounding, and we need to get off. We can't though because there are all these sharks, and huge whales, and other dangerous sea creatures jumping all around the boat, so we are stuck. I know whales are not dangerous, but there were mass numbers of them.

Third, last night I had a dream I had cancer, and in my dream I was telling myself I knew I was dreaming, and that I needed to go get checked out. That freaked me out. I woke up a bit worried, but I know I am fine.

Anyway, you are now welcome to let me know how crazy I am, ha!

Jude is about the same, and his diapers have become very messy so I am yet again leaning towards teething causing all his issues. Emily never had problems with her teeth, so this is all very new to me.



**Update ~ One of my best friends just read my blog, and called to tell me I am officially nuts :)

Seizures

Jude's eating has picked up, but so have his seizures. We are a bit perplexed by the increase, and are hunting for reasons. I am thinking Jude will have the eeg the doctor suggested much sooner than later. Jude is still in good spirits so we don't think he is sick. We will just take it day by day, and see what's going on.

The weekend has flown by, but I have gotten some relaxation time which has been wonderful. Jude and I woke up about 8:30, but we hung out in bed until 11, it was awesome!

I am going to keep this short, because the word seizure really sums everything up. Seizures are demons that rear their ugly head, and I hate them!

Dear Edward Cullen

Dear Edward Cullen,

You got nothing on Baby Jude, and his hair!!!

A feeding update.

Jude took about 16 ounces total yesterday, which isn't that bad, but it's not perfect. The nutrionalist said Jude needs 24 ounces of pediasure a day to achieve enough calories for his body. I am happy that Mike was able to get any nutrition in him though. Mike was again struggling with Jude this morning, and at eleven Jude had only eaten 2 ounces. He seems to eat in his own time, but he is not like Emily was. She would wake up ravenous hungry after sleeping all night long without any food. Then again thankfully Emily never had a stroke, and never had issues with her brain. As horrible as that sounds, that is what this boils down to, Jude's brain just doesn't work the same.

So to our surprise Allumed called to tell us we had received a tomato chair!! My guess is my insurance paid for it when Medicaid denied it, and we are thankful. So our rep from the company came out to fit Jude in his chair........only to realize it was ordered so long ago, that it's way to small. I am now accepting bets on how long it will take to get a replacement, ha! They are also looking into a loaner stander, and I am really praying we get this quickly. I think the stander could help with Jude's head control.

As a side note, I am selling "Scentsy socks" these are small stockings I have filled with a full size Scentsy room spray, and a car candle, they are $11. Scentsy room sprays are amazing, and one squirt can fill the room with aroma. These make amazing teacher gifts, great client gifts, and everyone loves them. I even have amazing scents for guys like leather, bourbon, rustic woods, and more. I will be placing the order Tuesday, so please let me know if you are interested. I can ship!!

Medication, eating, and therapy

Well since they increased Jude's medication he is of course.......not eating. That's not a huge shocker huh? We have been down this road before! I have also noticed that the medication fog has increased. I really believe the seizure increase was brought on by the teething, so I am wondering if we were premature in increasing the med level. It seems like there are constant "what if's" when it concerns Jude. "What if this is normal, what if it's not, what if it's teeth, what if it's not", etc.

Today is Wednesday so we had Jude's speech therapy session today. It was very hectic for Mike to get Jude to therapy today. I think any time Mike has to take Jude somewhere his entire day is thrown off, and it sends him into a tail spin. Mike did say that it really helps him that I tag along on Wednesdays, and I understand that because two hands are better than one. I am also very glad that I can help in somewhere because I feel isolated at work sometimes. We chatted with the therapist about Jude's refusal to eat, and we explained we had been down this road several times with him, and we just hope there isn't a hospital stay involved. She then suggested another suck swallow test to see if Jude is aspirating in anyway. Jude needs another EKG too, so maybe after the holidays we will check him in for a night at the hospital. The therapist worked with Jude's mouth again, and explained he has low tone. The good thing is that Jude will bite down if you put your finger in his mouth, and he opens his mouth when she places her vibrating wand on his chin.





She suggested that we try to let Jude place his hands in his food, and then bring them to his mouth. Since he is beginning to midline we are hoping he likes the food on his hands, but if he doesn't she said that could show a serious sensory issue. I also requested a side spoon to see if Jude will try to maneuver it to his mouth, like he does his pacifier. Jude's therapist is very kind, and patient, and she seems to want the best for him.

Once we left therapy Mike seemed very discouraged, and told me he feels defeated. He said that he expects Jude to improve, and when he doesn't it's a let down, because it seems we take one step forward, and thirty back. I explained to him that I look at the fact that Jude is disabled, and that I don't "expect" him to walk, but I know it's a possibility. Therefore, in my opinion we just have to get him the best therapy possible to help him possibly achieve miraculous goals, because there is always hope. He said he sees things more black and white, and I see more grey. I guess we are all different, but hopefully we can balance each other out.

Posing with sis

I love this picture below



It's recent, I just took it the other night. I love it because Jude looks like he is actually posing with Emily, but I know he is just smiling because she is pressing on his face. I also love all the chocolate on Emily's lips, she had been divulging in her Halloween candy.

Jude's seizures seemed rather controlled last night, but his eating decreased, and he seems like he is in a bit of a medication haze. I guess it's a give and take type situation. Last night I came to the conclusion that Jude was doing so much more last week because the medication levels were not correct. Therefore, his true self was peeking through the clouds that surround him, although it's still nothing compared to how he was with Pheno. When Jude was on pheno he didn't smile, he didn't giggle, he just would lay on his mat.

I am hoping he will seem more attentive tonight, and that when I get home I will get a report that he ate a lot more than yesterday.

Seizures, and an outpouring of history.

It has been another busy weekend, but Mike and I did manage to spend some time together. This was also the first weekend since Jude had an increase in his medication, but I am afraid we still witnessed a few violent seizures. I hate the fact the seizures are beginning to become violent and audible again. I wish there was someway to stop them in a more permanent manner, but that doesn't ever seem like it will be possible. It seems we all have our battles from feeding tubes, illness, to seizures. Jude's are 100% the horrible violent seizures.

Tonight Mike and I watched "My Sisters Keeper". I had mentioned before that I had read the book which was fabulous, but the movie was great too. The book was better, but as a parent of an ill child I almost selfishly want everyone in the world to watch this show. The movie does a good job of portraying not only a sick child, but the many duties of caring for a that child. This means it can get messy at times, but with love you take care of your family member. When the girl with cancer needed her sister to wipe the blood away from her nose, and clean up her soiled sheets, and her back I lost it. I cried my heart out, but I guess it's because I knew Emily would do the same, but I don't ever want her to have to do that. While watching this movie I had many thoughts flutter through my mind. I thought about my many friends I have met online with children afflicted by Cancer, heart conditions, and strokes. I thought about the feeding tubes, medications, and hospital stays these people endure, and how amazing their strength is. I thought about how the doctors must feel, the parents, the siblings, and of course the patient. I agreed with the line in the movie that when you have an ill child in your family the very foundation the family is built upon has cracks that at any time could implode. This led to other thoughts.

There are many situations in my life that I have previously skimmed through in a blog, but I have not gone into detail. One of those instances was April 5, 1988. The date still rings in my ears, and as I typed it I literally got chills. Prior to this date I had an unfortunate tragedy in my family because my mother died, and that led to a trickle affect that led me to living with my grandparents. They were amazing people, God rest their souls, and while living their I met an amazing boy named Chris. He was only 16, and in my eyes just beautiful. He was tall with tan skin, big brown eyes, sandy blonde hair, and a smile that would light up a room. He was in my mind my very first true love, and I adored everything about him. I waited in anticipation for his phone calls, and would giggle like the young girl I was in regards to anything he said. We spent hours on the phone, and all my thoughts focused on this wonderful boy. Unfortunatley, we both had issues in our lives, and slowly those lives walked a path of fate that I wouldn't like at all. Since we lived about forty minutes from each other it was difficult to see each other, so Chris would sneak over at night. We were so young, and this was wrong, but it was so exciting. I was so innocent (and stayed that way thank you), but I still snuck out with him, and we would just sit and talk for hours. One night we got caught sneaking out, and Chris was so upset he had disappointed his parents. The next day he called me at school, and when they pulled me out of class I knew he was on the phone. In a low voice he told me he planned to kill himself. He had spoken these words before, and had never followed through with any attempt. Therefore this time for some reason I put little thought into his words except to assure him I loved him dearly. I told him he couldn't do that because it would not be fair to me, or his parents. I thought he would be fine, and I hung up the phone............

I hung up the phone.............I shouldn't have. Later that day I was laying on the track field waiting on my race, when I popped up, and told the coach "I have to go home now!". I had the worst feeling creep across my body, and I called my grandfather to come get me. I sat in anticipation of the phone ringing, so I would hear his sweet voice, but the phone never rang. I called his house, but his mother answered which never happens, and I in my young 15 year old fear, hung up. Soon his best friend called, and told me the worst, Chris had in fact killed himself. I was shocked, sick, and desperate. His mother walked in from work only to find him dead. I won't go into the details, but it was more than any mother should ever face. He didn't want to die, and there was evidence of that, but teenagers believe they are immortal until reality takes control. So he died so young on April 5, 1988. Why am I writing about this? Because I needed to, and because sickness in children presents itself in different ways, not only in situation as prominent as others. He needed help, and they had tried to get it for him. We should always listen when someone threatens to take their own lives, because sometimes they might follow through. I have never spoken with his mother after this, and in some ways I have blamed myself, and wondered if she did too. I have talked to his dad, and sister, who were both very kind. Each year I still venture out the the cemetery and leave carnations in his memory.

In our lives we encounter situations that ready us for more difficult situations in our lives. Many times I have felt that I have had my mother, and Chris holding my hand during tragic times, and times I have felt very alone. His suicide was probably the hardest thing I had ever been through until Jude's situation, but maybe I am better equipped to handle this journey because of what happened before. All I know is that for some crazy reason a bright light in the world was quickly extinguished. I could speak for hours to teenagers about how selfish it is to take your own life, but I am not sure they would listen, I would still tell them though. Rather than focusing on the very sad funeral where I felt so lost, I choose to remember the last night I saw Chris. He was standing in the moonlight with his sandy blonde hair, such a beautiful boy, who will never grow older. I wonder what would have happened in his life if he had. I had a dream before I married Mike that Chris told me, "this is right". Who knows if it was him or not, but his tragic circumstance definitely prepared me for today. Somehow I still feel those that have left us help guide us today, and maybe that's true. I remember him fondley though, and I hope he is somewhere where he is much happier than he was here.

Smile boxes

It's the weekend, and I am thrilled. After a long week at work, I am about to leave to go conduct a Scentsy party. I have had several life insurance quotes, one horrible claim, and some other interesting stuff today, so luckily it picked up a bit.

I have little to report on Jude except the same as yesterday. However I did want to post to ask everyone to consider donating to Emily's Smile Boxes. We are trying to raise funds to distribute Valentines boxes after the first of the year. If you know anyone interested in donating please let me them know. You can visit www.emilyssmileboxes.com for more information.

Thanks!!!

one step forward, a tiny step back

We have been very slow at work this week, and it's driving me crazy. I prefer to be really busy, so I am hoping that it picks up very soon. I have put a call into several other agents, and they all seem to be pretty slow too. I am sure the impending holiday season has something to do with it all.

So Jude was very upset when I got home last night, and just laid on me crying. I was worried that after all the progress he had made he was now getting sick. I finally got about 4 ounces of pediasure down him, and he just laid in my arms. He didn't want to be put down, but he was smiley as long as I held him. I also had him "looking" at several things by pointing to them, and watching him turn his head. The happiness I feel when he does this will never wear off. I took Jude to bed pretty earlier, and surprisingly he fell asleep easily. Mike had stated he had a 3 hour nap earlier in the day, so I was surprised he didn't fight me on bedtime. I am keeping my hopes up that he was just tired, and not battling anything.

This morning Jude woke up with a pretty violent seizure, and this was a bit of a let down for us. I placed him in bed with Mike, and I, and soon my two boys were snoring together. A good indication of a really bad seizure is when Jude is wiped out after the episode. I laid there awake listening to their snoring tunes, but laughing at how cute my boys are when they snuggle together. I am going to check in later, in hopes that Jude has not experienced any other seizures. Seizures decrease Jude's learning capabilities so it's vital that we get them under control. An increase in seizure activity can indicate an illness, teething (he isn't), or a change in the weather (generally a storm). I have learned a lot about seizure activity in the past year.

Speech Therapy

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


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


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


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


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

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

A doctor report

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

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

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

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

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

Seizures, and traffic

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

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

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

Nascar is here vrooom vrooom,ugh

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

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

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

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

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

A christmas smile box

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

"Dear Noah

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

Love Emily"

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

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

Halloween pictures, and more

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


Emily and the witch that greets our trick or treaters


Em and Jude getting ready to go


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


Our yard at night time


Em and Jude at the entrance of the haunted cemetery


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


All tuckered out. She loves her brother so much!

A quick update

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

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

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

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

A very happy Halloween

In our family we love holidays, and we do what we can to provide joy to the kids around us, and all those that we encounter. We love love Halloween, and we adore Christmas. For Halloween we set up massive decorations, and try to get unique treats for our tiny treaters. We knew we had a lot of work in front of us to get our house up to speed, but we had a full schedule. Well yesterday did indeed prove to be one busy day, so we started the day knowing it would be a crazy run. In the morning we met our friend Tiarra Fleming the photographer for some photo's of Em, www.littlefacesphotography.blogspot.com. Here is a great shot she got of my Em, doesn't she capture the best shots? This is just Em right off Tiarra's roll, she said she loved shooting her. If you need an affordable photographer, I recommend her!! For those of you that know us, you know Mike is also a photographer, and a picture he did of her family is on her blog.



We then ran two a softball double header, plus we had to make up the end of a rain out game, so yes that's 3 games. We then ran home, and got ready for Halloween, I was one tired momma. The good thing is that while I was at the game with Em, Mike put up all our crazy decorations. I was very impressed when I got home, and saw all he had done. Em's little cousins Faith and Ransom joined us for trick or treating, corn dogs, and lots of fun. The kids took off with Em, Jude, and Mike to troll the neighborhood for candy, while I stayed back to pass out our own treats. I honestly, LOVED the time to myself just handing out some great treats. The kids LOVED our decorations, and even those little ones that were really really scared braved the mean witch next to my door to get the big lollipops and giant pixie sticks. They would timidly say "Happy Halloween", and then would whisper to me "It's all pretend you know". I would wink at them and tell them, "I know, but don't tell your parents" and they would run off smiling.

The greatest part of last night were all the smiles we got from Jude, and his giggles too. He seemed to really feel involved, and tried in his own way to communicate that to everyone. Mike said he fell asleep in his wheelchair while trick or treating, but that everyone still gave an extra piece of candy for Jude's tiny pumpkin bucket. Many of the people recognized Em from her smile box campaign, and Jude from my blog. One mom who was a special ed teacher, even went as far as to get Jude some gummy treats because the hard candy she had probably wouldn't work. Mike said a few people commented about how great Jude's stroller was and how it even had a "head rest", but they just didn't know it was special need equipment. The point is though is that it was an awesome night, and Jude enjoyed it too. When the kids got home, tired, and dragging with bags full of candy, they collapsed in the living room. I put Jude in the middle of them as they played "Candy exchange". They then traded for the candy they didn't like for candy they did from the other kids. Jude squealed, turned, and lifted his arms as the kids spoke. He felt included, he was happy, and that made me happy.

I will post a plethora of pictures tomorrow :)