The royals and the baby

Awww the royal wedding, it's finally here. As a little girl who just lost her mom I was glued to the TV when I was merely 8 years old watching princess Diana walk the aisle  to become the Princess of Wales. I was fascinated. Little did I know that he was not in love like she was and the fairytale would end in tragedy. Regardless I was a great admirer of Diana's and her lengthy charity work. So it's great to see her son marry someone he seems to truly love. I watched bits and pieces of the wedding today, but I have the entire event Tivo'd at home. I plan on spending my Friday night with the Royals!

So it seems that Mike, Charlotte, and myself have had a touch of a stomach bug. It also seems Jude may have caught it because he is throwing up today. Mike called earlier and I just heard Jude wailing in the background. I really want to be there to hold Jude while he is upset. It is hard to hear him cry when I am not around. I know he is in good hands, but it still makes me sad.

Mike is suppose to start his new job on Monday. We are praying all the finality's are put in place and that this is a done deal.

Jude and Em

Well Jude has not been doing this .......

without a fight. He is a bit irritable at night and only wants to be held. He also is seeming to have more seizures at night. We put a call into the neuro yesterday who cut Jude's seizure medication back. We also discussed the Keto diet. He is open to the idea of putting Jude on this diet to see if we are able to cut his medications back. He is talking to a specialist regarding Jude and the diet this weekend. If I don't hear back from him by next Thursday I will call back again. He said that since Jude now has a G button he thinks the diet may be beneficial. He also warned us that it carries risks just like the seizure medications do.

The nurse and the case worker from the medically dependent children's program came out to evaluate Jude. They both relayed to us that they have been told there aren't any cuts to the MDCP program due to the government cut backs that they are aware of. They have been told that their program is safe. I sure hope that's right!!! Maybe they know something I don't?

So Emily woke up with sore legs again this morning and her rash is beginning to resurface. We had let her go to church with a friend last night, but we now know that wasn't a good idea. She may seem well, but her immune system is just weak. So Emily is confined to home for awhile longer.

Also, I have been hunting a long white or ivory full "romantic" tutu for Emily for Kentucky........and all I have to say is WHO KNEW tutu's were SO hard to find. Sheesh. lol!

transportation, a new job, and Keto

Yesterday was a stressful, but blessed day. It seems many of my days are laced with my own emotional outbreaks and sprinkled with life's solutions. Per my prior blog Mike called me very upset due to Jude's first medical transportation experience. Everyone who knows us knows that Mike needs to work. He needs it for his own health and to help our family. I have been the only working parent since 12/08. We wouldn't give up our life of caring one on one for Jude unless an amazing opportunity has presented itself. Mike is pending a job with the Dallas Cowboys. It could very well be the very answer to our prayers. Not only do they want Mike for his abilities, but the person he has interviewed with has been amazingly supportive about Jude's situation. According to his phone call from the headquarters today Mike has the job he is just pending the final pay results. So as a test run Mike set up transportation for Jude to therapy today. Jude will start school in September, but prior to that he has to get to his physical therapy. The driver was late.......so Mike called. The driver was even later ....... so Mike panicked. Finally the driver arrived. They had to strap Jude in, with his nurse, and with Mike. Mike was very stressed.......but in the end everything worked out. Mike felt comfortable with the driver and I think he was able to breathe a little easier at the end of the day. Our nurses have full signed releases to issue treatment to Jude, but they cannot transport him.

Emily is doing better. She stayed home from school yesterday because her legs were hurting so bad, but she went back today. They have the TAKS test today and tomorrow which has stressed her out. She always gets commended or close when she takes these tests, but she still stresses. I really think it's sad that the TX educational system focuses solely on these tests now. They seem to solely go to school just to learn the information on these tests and nothing further.

I am calling the neurologist today because Jude seems very over medicated. It's a catch 22 because to properly control his seizures he must be medicated, but then he doesn't learn anything. Jocalyn will be happy to know we are talking to the doctor about the KETO diet. It scares me because Jude already takes a medication that can affect his kidney's and liver, but if it works this may help him wean off the medications a bit.

The weather has yet again been a beast in TX. Yesterday we had 15 tornado's touch down in our surrounding areas. We also heard Arkansas got hammered last night and is expecting more today. Prayers to those affected by these storms.

Easter updates

It was a busy weekend so I didn't really get a chance to post. Friday night we were suppose to go see Scream 4, but our nurse got caught in traffic so we settled for dinner. Saturday we then caught the noon flick of the remake and it was great! I am a huge Scream fanatic, which is rather comical because I don't normally watch scary movies. I like the old thrillers like "Psycho", "Dial M for Murder", "Halloween", and
"The Shining". I hateeee the new horror let's see how much blood we can stick in one shot like "Saw". Stupid movies! I want a writer to leave me guessing, wondering what is going to happen next, and trying to make me figure out who the killer is. I love the comedy in Scream too. I always tell people Scream trivia.......like the original name was "Scary Movie" but the producer had other plans for that name. That Drew Barrymore was originally suppose to play Neve Campbell's part, but liked the role of Casey Becker better.

Anyway, enough with the movies. So Friday night Jude got a blog in his feeding tube line and he seemed so uncomfortable. It took forever to finally get the line working right. Jude was then up and down the entire night!! Turns out the clog was actually in Jude's g button and they had to change it out on Saturday morning. We believe the clog was from the Melatonin which we have had issues with before. So we only gave Jude the Klonnopin on Saturday. You would think this would be enough, nope! He didn't go to sleep until 11:30 and then was up and down from 3am on. So last night we did give the Melatonin and he slept great. We slept well until a 3am storm woke us up. We have had terrible weather in TX lately. This was our sky yesterday evening.

Overall we had a great Easter yesterday. My family came over and we ate some delicious food. We also got to see Jude show off to everyone. He has this new thing he does when you shake his chest.

Today has not been as pleasant. Jude is taking his first ride on medical transportation since Mike is about to start working. We wanted to try it out before he started work. Well they are late. Not to mention Jude has to wait at the facility for an hour after his appointment for them to pick him back up. So Mike is upset saying he knew this would be an issue and the reason he didn't want to get a job. I am so tired of everything landing on my shoulders. I am really at my wits end with it. So I have no idea what the solution is, but I guess it's in my hands to find one.  Our understanding is the nurse is not suppose to drive Jude.

Good Friday everyone

Emily went to school today.........we will see how long she lasts. She did eat better yesterday. Mike explained that she needed to eat the food for fuel and that she is about -5 pounds away from being admitted. Our friend sent her a pizza at lunch and then another great friend sent chicken taco's last night for all of us. It was truly a blessing. We have been very busy lately and it was nice to not worry about dinner.

Jude is going through a phase where he does not want to be put down for any reason. Mike said Charlotte is having to hold him most the day and then I hold him at night. I have been through this with him before and he will move out of the phase. He could have something going on nuero wise that causes issues we cannot see. So maybe us holding him makes him feel more secure.

I have to work today and it is super super slow. The only thing we have really done is take a payment for a customer who went to their agents office to pay and they were closed. I am thankful for my job and I am here to serve my customers :). I am going to get all my paperwork wrapped up today since we are not busy.

Emily and Jude

Emily went to school today.......she wasn't to happy about it, but she went. She is still coughing a lot, but my biggest concern with her is her lack of appetite. She is just not eating which concerns me and now has Mike upset. This morning she probably had three bites of cereal. She has never been a big eater, but nothing like this. I am concerned about her body shutting down from lack of nutrition. Last night we did get two fajitas in her which made me happy. It was my grandmother's 80th birthday party and Emily felt up to going for awhile. I am glad we went because she ate the food well. I put a call into her school nurse to take a look at her today and let us know what she thinks. I am also stopping on the way home to pick up items that I know Emily really likes. Mike says I am catering to her, but at this point I don't care what she eats as long as she gets food in her body. She won't even drink the shakes now.

Jude was so good at the birthday party last night. He was quiet and just looked around everyone. It was so great to see family and friends. Once we got home I was playing peek a boo, itsy bitsy spider, and patty cake. He loved it and was laughing hysterically. 

Well the school just called..........Mike is on his way to get Emily. 

 Pictures from going to eat last night

hail, Mono, and a crying baby

Em is home again today, sigh! Last night she started complaining that her legs were hurting really bad. She had me massage them, then took Motrin, and finally went to bed. She woke up this morning saying her muscles hurt so bad she didn't want to move. I walked into her room and said "Em.......you need to think about this. You can only miss 16 days of school before they send you to summer school to make it up. So do you feel bad enough to where you cannot go put up with it until ten am?" The response was "yes". So she has some more medicine in her and is sleeping it off. Tonight is my a special event for one of my family members and I am hoping Em feels up to going. I really think this is just a reaction to how tired she was from school yesterday.

On the other hand Jude is doing well except he did NOT want to be put down last night for any reason. He will let you know if you put him down too. He was very difficult to get to bed, but he finally gave up and fell asleep. Mike met with the teachers in regards to Jude starting school. They discussed the fact that a homebound teacher only comes a few hours a week. Although, in my mind that is equivilant to the amount of therapy he is getting now. The teacher really believes Jude will do better at the school and she said they are going to deem him medically fragile. Our nurse will get to go with him if we choose to send him. We are still up in the air on what the best decision is for Jude. I know that I am not trained in therapy and special education so having a professional work with Jude would probably be the best choice. Although, I am worried about his weak immune system. Home schooling is a choice, but again I am not professionaly trained to work with special education and neither is Mike. In addition Mike will be starting work soon......we hope. So it's a big decision we have to make by September.

For those of you that read my blog out of the state of TX. I would like to introduce you to the reason we have the highest insurance rates in the nation. Yes, I said the highest. I have been an insurance agent for 19 years ... I started in 1992. (Hold on let me soak in the fact I am old.) Anyway, in my years I have taken a lot of claims do to this pesky little ice ball called........HAIL. This fell outside my office yesterday. Yes, that's the size of a golfball.

The Disabled Child

I have posted this poem before. It's one I think is amazing and one I want to hang on my office wall someday. Today I am posting it for a mom who is struggling right now. I feel her pain and my heart goes out to her.

I am the Disabled Child
I am the child who cannot talk.You often pity me. I see it in your eyes.You wonder how much I am aware of...I see that as well.I am aware of much...whether you are happy or sad or fearful,patient or impatient, full of love and desire, or if you are just doing your duty to me.I marvel at your frustration, knowing mine to be far greater, for I cannot express myself nor my needs as you do.You cannot conceive my isolation, so complete it is at times.I do not gift you with clever conversation, cute remarks to be laughed over and repeated.I do not give you answers to your everyday questions,responses over my well-being, sharing my needs,or comments about the world around me.I do not give you rewards as defined by the world's standards...great strides in development that you can credit yourself.I do not give you understanding as you know it.What I give you is so much more valuable...I give you instead opportunities.Opportunities to discover the depth of your character, not mine;the depth of your love, your commitment, your patience,your abilities; the opportunity to explore your spirit more deeply than you imagined possible.I drive you further than you ever go on your own,working harder, seeking answers to your many questions,creating questions with no answers.I am the child who cannot talk.


I am the child who cannot walk.The world sometimes seems to pass me by.You see the longing in my eyes to get out of this chair,to run and play like other children.There is much you take for granted.I want the toys on the top shelf.I need to go to the bathroom...oh...I've dropped my spoon again!I am dependent on you in these ways.My gift to you is to make you aware of your great fortune,your healthy back and legs, your ability to do for yourself.Sometimes people appear not to notice me; I always notice them.I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent.I give you awareness.I am the child who cannot walk.


I am the child who is mentally impaired.I don't learn easily, if you judge me by the world's measuring stick.What I do know is infinite joy in the simple things.I am not burdened as you are with the strife's and conflicts or a more complicated life.My gift to you is to grant you the freedom to enjoy things as a child,to teach you how much your arms around me mean, to give you love.I give you the gift of simplicity.I am the child who is mentally impaired.


I am the disabled child.


I am your teacher.If you allow me, I will teach you what is really important in life.I will give you and teach you unconditional love.I give you my innocent trust, my dependency upon you.I teach you respect for others and their uniqueness.I teach you about the sanctity of life.I teach you about how very precious life is and about not taking things for granted.I teach you about forgetting your own needs and desires and dreams.I teach you giving.Most of all, I teach you Hope and Faith.
I am the Disabled Child


~Author Unknown~

Emily and Jude

Emily didn't make it to school today. The rash is still there and goodness knows Middle school can be hard enough without the ridicule from kids in regards to a rash. She is also coughing a lot again, but I still think she is feeling better. The plan is to send her to school tomorrow and see how long she lasts. The nurse has instructions to call us if she shows up in her office feeling bad. She is also out of any contact sports for the next three weeks.

So Jude has learned a new trick and it's really cute. When I say "let's play peek a boo Jude" he slowly raises his arm up to where it will cover his eyes. Sometimes I have to push his little arm down to say PEEK A BOO, or sometimes he will move it himself. It generally takes him a few minutes to calculate how to put his arm up, but he will eventually accomplish this task.

Mike is currently on his way to visit with Jude's elementary school. He will be calling soon to tell me about the home bound teacher and Jude's plan for the next year. He also talked to the powers that be regarding transportation for Jude if Mike works.

Thank you to all those that sent food and more while Emily has been sick. It's really helped!

Sunday

The rash is fading, the fever is gone, and the cough is a bit better. Emily looks super skinny but she is coming out of the worst of this. I know her fatigue can last awhile but I think she is doing much better. I am about to take her out for a walk in the sun. The vitamin D can help her and I want to get her strength back a little.

I am currently watching Jude play with his little spin wheel. He uses a closed fist and can only slightly turn the dial to make his toy sing, but the point is that he is getting the task accomplished. Jude is still a bit groggy from the new medication, but he seems in good spirits overall. Tomorrow is the meeting with the school regarding Jude attending special education when he is 3. Our early childhood intervention only lasts until age 3 here and then he must attend school. I have been told that our school district can provide home bound teachers for those with compromised immune systems. I have to work tomorrow, but I know Mike will ask all the questions I would want to know. He only has Jude's best interest at heart.

We are hoping to hear something about Mike's potential job tomorrow. We are praying and crossing our fingers. This job could really change our lives. If Emily continues to improve we will still try to go to Kentucky in May. She was really looking forward to it. She is pretty upset she missed her charity function last night, but we didn't want to take the risk.

quick update

Emily's rash looks terrible today.........but...........she feels better. She hasn't had fever in over 24 hours and her coloring is coming back. I am hoping this lasts!!

Jude is also doing well. I know Em is really wanting to get out of the house. I let her ride in the car with me up to the store but that was it. Hopefully she will be back to her full self very soon.

Emily's labs

Her labs results are normal!!! HOORAY!!! She still looks terrible, the rash has spread, and she is very tired but we now know there is nothing harmful in her lungs. Thank goodness. So we will just battle this out. I realized that I am used to dealing with Jude's illnesses but I am not used to Emily being sick. I cannot imagine anything happening to my Em and I have been really stressed about her. So I am very grateful everything came back clear.

Jude seems to be a bit affected by his medication increase, but overall he is well. He is very smiley tonight and it warms my heart.

I want to say a big thank you to Mike for getting Em to her doctor appointment today. When I had to leave he stepped in and really helped her out. They told her she would have to give blood and he held her the whole way through.

Emily update

Gees. Emily woke up today and her entire body looks like this.

Luckily we had the doctor appointment scheduled at 10am. Their main concern is Emily's continued fever and they also heard crackling in her chest. The lung X ray showed some thickening of the bronchial wall so they took a blood count to rule out an infection they aren't finding. We are pending the blood results and then we will know if we need to treat her further. They believe the rash is related to the Mono virus attacking her body.

Overall Em seems in pretty good spirits. She looks bad but she sounds better and is able to walk around. So we are keeping an eye on her. I have pretty much determined that if Emily's fever spikes again this weekend and the CBC results show positive I am taking her back to Children's. Hopefully this is all just viral related and Emily will start to get over this.

*%&^!!!

My stress level is really high today I am at my max. I am not sure why because goodness knows we have dealt with more pressing situations. Mike said he thinks it's the combo of everyone being sick and waiting to hear about his job. He came to my work and took me to lunch which made me feel a lot better. I was in great spirits until I got back and Emily called. She said that she had thrown up because she is coughing so much. I understand she is going to feel horrible but I haven't been through mono. I am not sure what is normal and what isn't. I have put a call into the doctor just to see what they say about the cough. I did check her pulse ox and last night it was at 96 and her temp is still high. Jude is looking pale and still isn't feeling 100% but he doesn't have the symptoms Emily does. Emily is stark pale and just looks awful.

I really felt out of sorts last night and again today. I also feel stuck between my job and home. Emily probably needs to be seen today but I have to work. I have a responsibility to my job but a greater responsibility to her. So I am trying to coordinate with Mike to get her to the doctor. While typing this they did call back and said they are a little worried about the cough and just want to check her out. Now to break the news to Mike and ask him to take her.

I will be really glad when this sickness is gone.



Ps. Em just called she threw up on the carpet. sigh! I need a house cleaner and a carpet cleaner.

SOS!

Oh Em is getting stir crazy and it's not pleasant. She feels horrible, but she wants to go back to school. She is so bored, but is just miserable. We watched American Idol tonight which held some entertainment, but not for long.

Jude is also miserable, but is not running a fever tonight. He has had Motrin and Tylenol around the clock so that could be why he doesn't have a temp. He doesn't want to be put down for any reason and only wants to be held. He literally whimpers if you put him down.

Mom............is about to pull out her hair. It's a little before ten and I just sat down to play on the computer. Jude is angry so I am going to have to pick him up.

Send Calgon, Wine, and chocolate!!! It's an emergency!!! lol Mike and Em are fighting because they are cooped up. I think even Bigs is going a little cuckoo!

Lord what I would give for my mom right now. I would love her to come swooping in with dinners fixed, a pat on the back, and a helping hand. I remind myself things could be worse, but man.........this really stinks.



Ps ~ As sick as you are of hearing about all this is as sick as I am of living it, lol! Remember you have to have humor ;)

A fever

I was playing with Jude last night and I noticed he felt very warm. When I took his temp under his arm his temp read 99.9. I gave him some Motrin and it brought the fever back down. Now today our nurse said Jude's heart rate was elevated, his temp was up, and he had rapid breathing. They put a call into the pediatricians office. When the pediatrician called back Charlotte informed her that the Motrin lowered his fever and his vitals went back to normal. So therefore, they decided to play this on a wait and see basis. If his fever gets over 101 then we have to call back and take him in. Well in my math work book adding a degree last night (from under the arm) would have put him right about the 101.

Anyway, Mike called to let me know what they had said and we chatted about it. Mike wants to have him tested like I do for the Mono but then again we see the other side too. There isn't much they can do if he does have it and he is going to have to get more sick before they hospitalize him. Which if it's mono and we pray it isn't we are pretty much guaranteed that is where he will end up. I am holding out hope that Jude is teething again.

Emily was feeling much better last night but she is down and out again today. Our life is pretty much in chaos right now. The good news is Mike had an incredible job interview with the Dallas Cowboys yesterday. I am crossing my fingers and toes that he gets this job.

Emily update and more

I just got off the phone with Emily's school and submitted a homework request. I was hoping she would be able to go back to school this Wednesday with medication but it just isn't going to happen. Emily is literally miserable. I did discover a good way to get some meals into her and that is a Vanilla protein shake. My husband has the powder mix at home and she really likes them. I may even stop at the store tonight to see if I can find some that pack more calories that she likes. She is very finicky and will not drink Ensure, Pediasure, or anything like that. She honestly likes the sports drinks so I may be pickup up some Muscle Milk. Emily's fever had spiked up again this morning when I was leaving. She seemed rather non-chalant and said "It's always high in the morning". I called Emily's school this morning and explained there is no way she will be back this week. They have submitted a homework request and will look at home bound schooling if she misses more than three weeks. Luckily she had an A/B grade point average before this happened.

Mike and I got in a bit of a tiff last night about where Emily should be within the house. She spends most her time in her room. When I got home I washed her sheets so she came downstairs to eat. She has a mask she wears around and I follow where she sits with Lysol. Mono is only spread through saliva so Jude would have to actually ingest some of Emily's spit, cough, or sneeze. I am not saying it cannot happen, but I also don't think I can confine Emily to her room for weeks on end. It's just not emotionally or physically healthy. Of course, if Jude gets this there is a high probability it would be fatal. So I see how Mike is getting upset. I am torn as usual. Em and I would check into a hotel if I had the money, but honestly with the precautions we are now taking I doubt he would be exposed now. He was probably exposed before she even knew she was sick because she kisses on him. Let's just hope he doesn't get it.

I mentioned Em was pretty teary worried about our Kentucky trip. When they diagnosed her one of the first things she said was "Kentucky mom? what if I cannot go I really wanted to".  I was going to market my business and Em wanted to be in a pageant there. I am beginning to wonder if it will happen myself. There is no time to learn a new routine unless she studies via video. She will be broken HEARTED and I don't want to tell her we cannot go. She was so looking forward to it and it was just going to be she and I. Maybe it will work out?

So a friend of ours set up a little food drop off chain last night which was so sweet. At first I thought it was to much and Em wasn't that sick. Last night when I finally sat down at 9:30 after getting meals ready, washing sheets, and more I would have been VERY thankful for food......lol! So she is just so sweet. I am battling a headache today. I am sure it's from everything going on and will hopefully go away soon.

Anyway, not all is bad. Here is a video of Jude last night.........and the famous high pitched mommy voice.

Update

So we have marked Emily out of school until Wednesday. She has to be fever free for 24 hours and then she can go back to school. Then if he fever redevelops she will have ot stay home again. She basically has a doctors note that explains she may be in and out of school a lot over the next 3 weeks. I really do feel for her. She said "it's kinda like being grounded but I didn't do anything wrong". We had to cancel Em helping with the celebrity waiter banquet this Saturday that benefits the Child abuse prevention center in DFW. She was pretty upset but I assured her it's for the best. We don't want anyone from there getting sick. I don't think she would make it through the night anyway. She is also really worried we won't be able to go to Kentucky, but I assured her that's a month away.

Charlotte put a call into Jude's doctor. They said the norm regarding taking extra precautions and then stated they may put Jude on something as a precaution. We are guessing it will be something to boost his immune system.

It seems if we keep Em on Tylenol or Motrin then she does pretty well. So I gave her some before I left today and left her an omlet to eat. She didn't touch the egg but finally came downstairs and made herself a waffle. I guess you have to eat what sounds good. She seems in pretty good spirits just tired. I never had Mono so I cannot relate to her on this issue.  Mike is at home with her and a good friend brought her lunch which was super sweet!

Emily's turn in the ER

A few weeks ago I mentioned I had felt "the sickest I ever have" and Emily wasn't feeling so hot either. So we marched off to the dreaded doctor. I try not to visit a doctor more than once a year. They diagnosed me with strep and Emily with a sinus infection. They prescribed us antibiotics and sent us on our way. I felt SO horrible that I would have taken anything at that point. It truly took me about two weeks to fully feel like myself again but I thankfully got better. Well Emily never really seemed to fully recover. I noticed she began looking more pale, she would push food away, then slowly a cough developed, and 5 days ago a really high fever.

I am the over protective mom that still wakes up in the middle of the night and I checks on my 12 year old girl while she sleeps....go ahead and laugh :). Anyway, she was burning up again last night. I got very concerned....like I do...and I couldn't sleep. In addition Jude decided he wanted to play the whine game all night long. I kept waking Em up to take her temp, give her meds, and cool her off. Finally about 9am I whisked her off the the doctor. Em ....for some fateful reason asked to go to Children's in Dallas. We had debated on Care Now, minute clinic, or Baylor. Emily suddenly spouted off Children's. They quickly took us back when they got Em's temp, her vitals, and saw how pale she was. The doctor walked into the room, took one look at her and said "I will be you money she has mono". Really?? You can tell that from looking at her?? So they came to take blood which was HORRIBLE! Em hasn't eaten much in the last few days so her blood was thick and it was hard to get it out of her body. She yelped as they poked her several times and my heart ached for her. I quickly checked myself and said "Em remember Jude does this every three months" and she said "I don't know how". They also did urine tests, chest X rays, and more.

About an hour later the doctor walked in and said "Yep it's mono". WHAT? Isn't that the 'kissing disease"?? Oh I am so uneducated sometimes. Mono is generally contracted by kids 10-15 years old by sharing drinks, being coughed on, or being sneezed on by someone who doesn't take precautions. They said Em has probably had it for at least 3 weeks now. Emily is now wearing a mask, cleans her hands every chance she gets, and doesn't cough on anyone. Our concern? Emily AND Jude. Poor Em is miserable....and I do mean miserable. Every part of her body hurts and you can tell her system is fighting hard to conquer this sickness. Jude.......well the sickness can cause liver damage and with Jude's medications it could be a bad combo.  So we are taking extra precautions with him.

What about Mike and I? Well I am about 90% positive I had it when when we originally walked into the doctors office several weeks ago. The ER mentioned that if we had made the decision to go to the urgent care today they probably wouldn't have caught it. I think Em and I were both previousley misdiagnosed. So I am hoping this means little Juder has a resistance to it and that Em will conquer it soon.

I hate to leave her tomorrow but I know she will be in good hands.
I really hope she gets better soon, the poor girl.

Little stinker and a sick kiddo

Jude complained a few times last night. My guess is that he was hurting. The sedation keeps his eyes closed but he still whimpers to where we can hear him. He also started choking this morning about 5:45 and I was thankful that I heard him over his monitor. I moved him to his side and he was able to get past his issue. That was a bit scary since there was an obvious build of of saliva from the medication.

So last night Em was bending down to kiss Jude and hit her head on his toy and immediately broke out crying. I felt really bad for her because I knew it hurt so bad and you know what Jude did? LAUGHED! Several times at her. He then started using his little fist to poke her in the back of the head. I swear I saw a look in his eye like he knew what he was doing!

So poor Em is home sick with a fever and a sore throat. There is a really bad case of strep going around that is landing kids in the hospital. I am sure she will be fine but as a precaution other parents might want to be on the watch for this vicious bug. It acts quick.

I had the funeral to go to tomorrow but if Em is still down and out I may not be able to attend. I am hoping she is feeling better soon.

Last night I was taking a bath and I heard a noise outside my door. I said "Em" and I hear a meek "yes". She was sitting outside my bathroom door and poked her head in.
I said "what's wrong"
Em "nothing"
Me: "Are just sick and need mom"
Em: "yea"
and she proceeded to tell me all about her day while laying on the floor outside my bathroom door. It was pretty cute.

Also, I am in the running for a big Scentsy bonus for a sales excellence award. I have to sell a certain amount by 5/31. If you need any refills, are interested in hosting a in house, online, or basket party please let me know. I would GREATLY appreciate it. https://jennortiz.scentsy.us/Home

A good man and a sleepy baby

My cousins grandfather passed away this morning. When I heard I burst into tears at my office which was an unexpected reaction. I knew he had been very ill, but he was still a good man and a constant figure from my childhood. My cousin is dealing very well with it. I think she knew it was time for him to go and that he wouldn't be in pain anymore. I am sorry for her loss today.

Jude had another good night last night. He was up and down a bit but still seemed like he slept pretty well. The nurse also noted a decrease in the seizure activity yesterday so the medication seems to be working well. Although Jude was very needy last night and was upset if you were not holding him. Mike and I took very fast baths and showers last night to get back out to Jude before he got upset.

So we are hoping to continue to progress from here!!!

It worked!!!

I don't feel so bad anymore! Jude slept really soundly until about 3am when he requested via a whine to be turned over. He quickly fell right back to sleep. When I got up this morning he was in his room while Charlotte got all his stuff ready. Jude was just laying in his bed very bright eyed. He had tiny little bags under his eyes from sleeping so hard. He surprisingly heard me, turned my direction, looked me in the eye, and smiled really big.

I always worry to much about new things. It's obvious the sedation worked and did what it was suppose to. We need our REM sleep to heal our bodies and our brains. I think Jude finally got some last night.

Sedation

Tonight Jude took his first sedative prior to going to bed. We strapped his blood oxygen meter on because it made us feel better. So far he is holding steady at 96/114.

When I gave him the medication he seemed to whimper as his eyes fluttered and I felt terrible. I hate pain medication or any narcotics. Many people enjoy them.........but I don't. I hate feeling out of control ....and I wondered if he felt the same way. Soon he was asleep with a half smirk on his face so I am sure he is happy, but it still made me a bit sad tonight.

Sleep study results

Good news and bad news.

The good news: Jude's brain activity and brain waves have increased since his last study. Thus showing what we have been saying that Jude is not understanding more.

The bad news: We were right about Jude's startle seizures. The neurologist said he is disappointed and worried about Jude's seizure activity. He said the "Startles" are no longer infantile spasms and have developed into full tonic seizures. He told Mike that if Jude could walk he could have to wear a helmet because these seizures are basically equivalent to a grand- mal that would knock a person down. Therefore they are increasing his seizure medication. They do believe it's Jude's tone that is keeping him from sleeping properly. The doctor said the night they studied Jude he got zero REM sleep which isn't good. Therefore he is prescribing the sedative for his night time sleep. It makes me sad Jude needs so much medication. In addition Jude has some sleep apnea and destated several times during the night. They are suggesting that Jude have his tonsils out. They don't want to do this right now since he has been battling a lot lately. They do however suggest this in the future.

So we start the new medication tonight. Jude will go back for blood tests and to see the doctor in June. They may also do another sleep study then.

Secret Millonaire and more

Jude didn't throw up tonight which is great. This gave us some family time without any issues. We TIVO the show "Secret Millionaire" and we all sat down as a family to watch it. Again it's one of those shows like Extreme Makeover that many people I know choose not to watch because it causes many tears and emotions to flow. I feel it's my duty to watch the show because we all take for granted everything that is laid in our laps. I think my life can be hard at times, but I honestly have no clue what a TRULY hard life is! Tonight's episodes was one of the best I have ever seen. Mike, Emily, and myself were all in tears. Emily looked at me at one point with tears in her eyes but smirking and said, "Mom I think you have cried 5 times tonight!" I just pointed at myself and mustered the word "touched". Em then replied "Mom I want to make one million Smile Boxes" and THAT is why I require my family to watch this show.
The most touching points? Honestly, all of the show tonight was touching. If you don't know the premise .... they take a very wealthy wealthy individual or couple and drop them in poverty stricken places for a week. They are given food stamps to live off of and they are instructed to search out people worthy of financial help.  This couple found 1. a fitness center that focused on building muscle in those with HIV and other debilitating diseases, 2. a center built for adults living with severe forms of autism, and 3. a center that helped children of inmates learn to beat the system.

The Autistic center touched my heart. This couple had a grandson who was diagnosed with Autism and you can tell it was very freshly engraved upon their hearts. When the wealthy gentleman explained that he asked the doctor who diagnosed his grandsons condition, "at age six will he ride the smaller bus or the regular bus" he then paused and said, "He is six and he is .........still riding the smaller bus" and a tear streamed down his face. I broke into.......SOBBING tears. I couldn't explain my reaction....I just cried, and it felt really really good! Em looked at me and said "Mom are you okay", and I nodded, and said "Yes Em I really am". Not to mention the facility they visited that encompassed inmates families. Many times families of inmates are prosecuted just like the parent is. I believe that it is not for me to judge. I refuse to give up on people. I think everyone has a good side or can at least ask for forgiveness. So what would you do? If you were out in public and you saw the "son" of a convicted serial murderer........how would you treat that boy? Makes you wonder huh? Would you whisper? Would you avoid him? Would you be overly courious of him?

Jude has a pending meeting with with school district regarding his transition into public schooling at age three. Yes, he is suppose to start special education at age 3, but I think we have decided to find him tutoring and home schooling within our private walls. This is still up for debate, but it's the way we are leaning. His immune system is already so compromised that I don't think we need public education weighing in our shortening his life span. Although, I feel like he does need public interaction so I am a bit confused. I am hoping to bring in extra therapy courses including music therapy for Jude. We will make our final decision in May.


Here is a clip of the show I was talking about.
http://www.youtube.com/watch?v=ByyKVPu_31o


Tomorrow we get his sleep study results and I will post them as soon as I know.

Frustration

I had a busy weekend so I apologize for not blogging. Overall Jude is very well but is resisting sleep tonight and he has thrown up countless times.

 Over the weekend I heard Mike talking to my friend Fleck about a show he saw about lotto winners who have become millionaires and then detached from their prior friends. They did this because they felt like they no longer shared any common interests. I began to think how selfish this was until I stopped and realized I probably fit in this category.... minus many millions of dollars. Oh what I would give for a mil!!! lol.  I feel very detached from people I love and care about deeply because I know they can never truly understand Jude's situation. They cannot truly understand why I don't "pop" by anymore, why I don't call all the time, and why I don't include them in anything. They don't get why Mike and I stay home most of the time, why shopping with Jude is a fiasco, and why Em's pageants in a SINGLE hotel room without disturbance is a God send of serenity. Many friends I used to have already found their path without me and I honestly cannot blame them.


Most everyone I know get's it, but some just don't. I admit that I know have become very jaded, and thick skinned, and don't really care if people get it or not. That's a bold statement coming from someone that always cared to much about what people thought.  Tonight Jude threw up SEVEN times.... just with me. Not to mention the countless times Mike and I held rags and suctioning equipment while Jude's feeding evacuated. I hate that I spend my nights with him this way. When the nurse is here I cradle Jude but I also take advantage of someone being here to watch him. So I HATE our nights are laced with such drama sometimes. 

Jude is now resting peacefully in his bed but not before I said "I cannot do this anymore", which are never words I utter. I quickly got passed my hissy fit once I remembered that the poor kid doesn't want to throw up anymore than I want to clean it up. So I quickly checked myself.  I held Jude closely and he quietly giggled under his breath as he fell asleep.

Tomorrow I start a diet and cleansing process. I will post updates on it. I normally eat healthy but I have strayed since my vacation. It's time to get myself in check....both mentally and physically. 

April fools

We had a GREAT night last night and that's no April Fools. We went to Bricks and ate yummy food and I enjoyed some yummy wine......hence my headache today, but it was worth it. When we got home we all went through over 100 Emily's Smile Boxes her school put together to make sure they contained all the right items. There were many boxes we had to re-do and we would crack up as we were fixing them. We had such a good time that Mike even thanked us for being a part of our family. It was wonderful. The only down part of last night was Jude had five really bad diapers. They reminded me of the C Diff incident he had, but we will hope it's not rearing it's nasty head. This is the second day of nasty diapers so we will keep a watch on it.

So Emily has been on a "prank" kick lately. She put a rubber band around the spray nozzle on our sink which got me the other night. She then put handmade confetti on Mike's ceiling fan blades in his man cave. Well last night Mike was laying in our bed and looked up at our ceiling fan and discovered more confetti. Well Em was fast asleep upstairs and Mike decided to get her back. He snuck into her room and said "EMILY" she woke up with a startle and screamed very loud as her confetti came hurling towards her. Gotta love our family!