Good night

I ache being away from Jude tonight, but I know he is in good hands.....I will update more tomorrow. Tonight is as the doctor said a "wait and see how he does type of thing".

Alert

Jude has been up for several hours. In fact he was up, and I slept. The nurse said that he is due for a nap, but I explained that he doesn't normally take a nap. She just laughed when I told her that.  So since he isn't trying to sleep I am thinking he is feeling better. He is pretty pale today, but he is alert looking around. He has been taking a slow feed of pedialyte for a couple of hours, and he seems to be okay. The doctor explained that Jude has to be on a continous feed for four weeks because of the Nissen. We will then get to go to the bolus feeds, or the continous feed at night.

I just wanted to update everyone that he was alert.

Update number 4 billion.......jk

The nurse practitioner just came in and talked with us for awhile. She was very nice, and knowledgeable! She said they are going to keep Jude another night in PICU. They will be starting a slow feed of Pedialyte today though his tube to see if he can tolerate it. They don't want him retching with the stitches in place. She also seemed concerned about the three hour seizure, but not concerned about the fever. She said they will be doing a medication level test to make sure his levels are okay and his liver is holding up. She also explained that Jude has tested positive for Methicillin-resistant Staphylococcus (http://en.wikipedia.org/wiki/Mrsa) Basically we all carry staph in our body, but Jude has a form that is resistant to many antibiotics. They explained it can be common in children that spend a lot of time in the hospital. She said they do not normally treat this form of staph, but if Jude presents with any type of bacterial infection they will treat it with very powerful antibiotics immediately. She said generally there isn't an issue, but this form of staph can cause problems quickly. The amount of Morphine they are giving Jude is so small they don't think it's the cause of the seizures. Also, it is keeping him calm, it's when he gets upset that he goes into the full blown seizure.

I have put an email into Jude's wonderful neurologist letting him know we are here so he can stop by and see Jude. I have to go home later today because I have to work tomorrow, boy that's going to be really tough. Mike is staying the night..........seeing him sleeping in the two chairs pushed together should be rather comical. I should take a picture!

I will be anxious to get back up here tomorrow night, and be with Jude. Jude is continuing to rest. His respiratory rate is fairly low but they assure us that is just from the pain medication.



Ps ~ I cannot use my cell phone in the PICU, I can only text.

The three hour seizure, and a follow up to my story from yesterday

Well I lied about the seizure stopping last night when I posted. He actually seized through the anti seizure medication for awhile, but then finally drifted off to sleep. About 5:30 they gave him another dose of morphine as a preventative for the pain, and it worked. He has been sleeping ever since, but what one awful night! The charge nurse just came to see me, and said she heard about the three hour seizure, and the fever. She is going to be keeping an eye on Jude along with the regular nurse. They have mentioned giving Jude Tylenol with codeine, but I am HIGHLY allergic to codeine so I am a bit hesitant. As long as he has the morphine, and there isn't to much of a gap he seems to do okay. I think his body just went into to distress last night. His hear rate soared for hours too, and that was the nurses main concern last night. It finally came down, and he seems to be resting well this morning. I am hoping he stays that way.

The charge nurse came in today, and she is just so sweet. She said she wanted to let me know that because I said something to her about the poor family that lost their daughter yesterday, she went to the social worker in the hospital. She said she had no idea they couldn't afford the funeral, and it broke her heart. So they have found funding, and I am so relieved! I know it doesn't bring their daughter back, but no family should worry about money at a time like that.

A rough night...

Jude never seems to be easy. He has given our nurse lots of "stress" tonight she says. At 1 am Jude woke up in a lot of pain so they administered his pain med, and he then went into an immediate seizure. That was at 1 am, it's now 3:45 am and the seizure just stopped, but only after a dose of ativan. Jude has also spiked a fever, so they are watching that. Since he is on antibiotics due to the surgery they really believe the stress his body is under is causing the fever, and the seizures. This was Jude's 5th seizure since the surgery, but he has never had a seizure last so long. Since they cluster he still held his O2 level, but his respiratory rate was all over the map. One minute it would be 20, and the next it would be 60.


Not sure he is going to graduate to that room anymore.

PICU Update 2

I have settled in for the night with Jude. Unfortunately there is only two chairs in Jude's room so I plan on pulling them together for a make shift bed. The doctor came in a bit ago to observe Jude. He says if all goes well they will move Jude to a regular room tomorrow. When I came into Jude's room for the first time today he had a very large oxygen mask on, and they explained he was having some issues so they were leaving it on. He has now graduated to the nasal canalise (sp?) to supply oxygen, which he likes better. I think he was sick of that large makes because it kept pushing his eyes down.

Jude can have morphine every two hours, and the medication wears off EXACTLY every two hours. The nurse came in earlier, and Jude was in a full backbend screaming and losing oxygen again. I said "Hi I am Jude and my drug of choice is Morphine". She cracked up, and gave him his meds right away, and Jude settled down. Poor baby, I hate that he is hurting so much. He also gave the nurse a big scare with elevating his heart rate to 207.  

He has stitches around the tube sight, and three small incisions that are taped. We have his little sleep sheep here that sounds like a whale, and his Scout the dog that sings his night night songs. He likes both of those, and they seem to soothe him a bit.  

I am alternating between the computer, my book, and the TV when Jude is sleeping. The staff is very nice so that makes things run a lot smoother. I am proud that my little fighter is being so tough. His coloring looks better since the surgery, and I think he will graduate to his big boy room tomorrow.

Jude is out of surgery

Jude is out of surgery, and is currently resting in the PICU. They are currently having a hard time controlling his pain, and are trying to find the right combination of medications. Even though Jude has not opened his eyes fully awake from the anesthesia he is bucking backwards, screaming, and holding his breath until he turns blue. I think it's scaring our nurse a bit, Jude always gives them a run for their money. The hospital is amazing as usual. We either have a nurse in Jude's room, or sitting right outside his door the whole time.

The surgery team has also been amazing! They were all very reassuring and asked as many questions as they could. Before they took Jude back we laid him on the bed, and we both kissed him goodbye. Suddenly Jude looked at me, and his bottom lip puckered out, and he let out a huge wail. It's as if he understood what was going on....and I think he did. Is it crazy that I actually felt relief that my son was upset before surgery? My heart also ached for him so I asked for a warm blanket. I wrapped him up tight, kissed him on the forehead, and laid him in the arms of the anesthesiologist. She walked him back to the surgery room instead of wheeling him in.

After the surgery they came and gave us instructions on where to go for the PICU. When we got to the waiting room there was a family crying in the corner, and you could tell they had lost a child. My heart broke for them. Later that afternoon I walked out to the waiting area, and I overheard a staff member explaining where they should go for burial assistance. The mom was sitting holding her daughters baby blanket, and not saying a word, just crying. I wanted to write her a check for the burial myself, but I didn't have the money to give her. I went back into the room in tears, and Mike listened to my story, and then he cried. We felt for them, and I wanted to do something for them, but I couldn't.

I know that story is sad, but I did want to share it. We should all be grateful for our children, and hug them everyday. So Jude is out of surgery, and we pray the next few days get easier for him.

causes, and issues

I won't even go into what a hard day yesterday was. A select few of you know why, but man it was a day from hades for sure! I am back in the office today, and holy moly Robin it's as busy as Batman's day yesterday! Tonight I plan on going home, and packing for the hospital tomorrow. There is a part of me that is aching because I know Jude will be in pain tomorrow. I feel terrible that I cannot explain to him why this will be happening. I guess I can explain, but I am not sure he understands. Tonight I will get to spend some time with him without the NG tube in his nose, and I cannot wait. I am going to hold him, and play with him, and give him all the tummy time he wants!

So one thing I haven't mentioned that I have been doing is researching the cause of Jude's stroke. In most cases of an in utero, or childhood stroke there is no explanation. Many times it isn't worth chasing an answers either, because it just brings heartache. I on the other hand truly feel like I know the cause, and I have known the cause. My gut feeling is telling me it was issues from the birth control I had been taking. I won't mention the name because I don't want to slander the name of any company. I will however say I really believe the pill form of birth control is dangerous, and the cause of many issues in America today. I lean more towards the progesterone only pills, or implants. I was only off my medication for a few days before getting pregnant. Early in my pregnancy my platelets showed to be very low. Later in the pregnancy they gave the low platelet count a name, Idiopathic thrombocytopenia. Now I am very aware that pregnancy can cause this issue, but since mine appeared with my initial blood test, I don't think that was the cause. In addition I had problems with my gallbladder, liver, kidneys, and more. I believe I had drug induced thrombocytopenia. Now there is a big debate on whether my issues, could have caused Jude's issues. Some doctors are saying yes, and some no.  My thought is......if my blood supply is giving Jude oxygen, and providing his nutrition and it's compromised common sense says his could be compromised as well. There really isn't anything I can do about this, but it is interesting. I am very interested in knowing if anyone else has ever experienced a situation like this. Like I said there is little that can be done, but awareness could be created if there is indeed a link. Although, it would be very hard to prove.

I am nervous about tomorrow, and I know tomorrow I will be even more nervous.

Also, say a few prayers for my sister if you don't mind. She is having surgery on Thursday to relieve pressure from spinal fluid building up behind her eye.

The room, and the dead monkey

Holy Moly batman, it's been very busy at work today! I haven't had time to think, much less breath. I am taking a few minutes of break time to blog right quick while I catch my breath. Saturday Jude pulled a good one on us, he decided he wasn't going to sleep. We put him down at 11:30, but he only slept until 1am. He was then up from 1am until 6:30am, I couldn't believe it! We have been using the melatonin for some time now, so I was a bit shocked he refused to sleep. I had a Scentsy party the next day to run so I stayed awake with Jude, while Mike slept. I didn't want Mike to be grumpy from lack of sleep while I was away. Jude also had a few more battles with throwing up this weekend, but he never got the tube up. Our nutritionist visited today for the first time since the hospital discharge. She said she is amazed Jude got sent home with an NG tube, because of the complete fail of the suck swallow test. She said the NG tube leaves open consistent possibilities of aspiration. I know the doctors, the nutritionst, the specialists, and more all debate over what is safe, what is right, and what isn't. So who knows.

We have noticed Jude really looking at us lately, and he will follow someone with his eyes as they walk by. This is a huge step because he never followed us before. I am still working with him on grabbing his rattles. He will not reach for them, but I can put them in his hand, and wrap his fingers around the handles. He will keep them in his hand for a few minutes before dropping them. Mike continued working on Jude's room this weekend, and it's almost complete. He is finishing out the walls, hanging the ceiling fan, and floating out the floor. He also decided to paint the ceiling a midnight blue, and he wants to put stars in the ceiling for Jude to look at while he sleeps. I think this is a great idea. I have to praise my cousin for the contractors she sent over. Mike said they were "really really good" which is a huge compliment because he critiques contractors hard.

So Saturday night we were sitting there watching the movie I blogged on, and I looked down and saw Bigs.....caught in the act. That's right, he had killed his monkey, tore his eyes out, all his stuffing, and left the poor monkey for dead.

Tomorrow I need to pack for the hospital, and Emily is going to my cousins house. We have all our instructions for where to go on Wednesday morning, and we found out the surgery will be at 10am. 

Corrina Corrina, a loss of a mother, and so much more.

Tonight Emily asked me to sit down, and watch one of her favorite movies that I have never seen called, Corrina Corrina. Since it was something other than a Disney flick I have seen over, and over again, I obliged. I would be spending time with her while watching something other than, "What a girl wants" so what could be better? Now "What a girl wants" is good movie, but after the 50th time it gets a bit old. So we snuggled in on the couch, and she promised I would enjoy the flick. I enjoyed it more than she could possibly know. One thing I rarely talk about is my mom, and I am not sure why I don't talk about her more. I think I am stuck regarding conversation about my emotions revolving around her, and I don't want to hurt anyone's feelings that have helped raise me once she passed. I want them to know they are so important, so rather than expressing my emotions surrounding her I tend to keep them inside.  Although, this movie, was particularly moving. Emily even knew certain parts of the movie that would touch me. She paused the movie when the lady in the beautiful red dress broke out into a soulful rendition of "Somewhere Over The Rainbow". She was right, I was so touched. My entire family knows how much I love the "Wizard Of Oz", one particular reason is because I shared that movie with my mother. It would come on once a year, and we both made it a huge deal when I was little. I even have handmade Christmas ornaments of every character in the movie that she sat and hand made. We are talking tiny little sequins surrounding a tiny red heart on the tin man. The ornaments are impressive.  

So the movie basically revolved around a little girl that had just lost her mother. The father is struggling, but is making the best of the situation. I laughed outloud when he took the TV dinner with the foil on top out of the oven, and popped them on a tin TV tray. "Oh my gosh" I exclaimed, "That was us!!". My dad did the best he could, but he was lost too. Who wouldn't be at the age of 27 losing your wife, and your childs mother? The movie was just so strange because it followed so much of my life when I was young. Down to the point that the lady across the street (she looked just like Whoopi) watched me, and I loved her. I was very upset when my dad explained to me that I was not a part of her family.

I remember wondering like the little girl on the movie did if you would forget the smell of your mother, how she looked, or how she spoke. If you are wondering, I have. I remember some things, like her beautiful hands that graced the piano keys with long nails. I remember her long blonde hair, but her face is very fuzzy. I remember sitting at the piano listening to another rendition of Beethovens Moonlight Sonata. I also remember the birds she loved so much in their brass cage, but the rest is a blur. I remember.........she was kind to me, even throughout her issues. 

It's strange that it's always Emily that points out emotional songs, movies, or more. Remember it was Em that pointed out "What a Wonderful Life", when I was agonizing over continuing my pregnancy with Jude. She is wise beyond her years. So I encourage you to watch the movie I mentioned, and remember that someone that relates to that movie closely. 

Jude gagged a lot today, but took in his feeding, and all his water, which is amazing. Mike is working on finishing the texture in Jude's room. Tomorrow he is going to paint the outside, stain the door, and paint the inside of the room. Mike wants is working on Jude's ceiling, and I cannot wait to see it done. He wants a "Starry night" based on Jude's campground room, and we think he will loved all the beautiful scenery. I am very grateful to all that have made this happen for Jude.

Tomorrow I have a Scentsy party in Springtown. I would normally take Jude with me, but he can aspirate on the long drive over there, so he will stay home. Em will be staying with Mike to make sure Jude is happy. Jude eats at 9, 3, and 9 so only three times a day. We pretty much plan our day around his feeding schedule, and if we have to leave him with someone it's only after, or before a feed. I know Mike is tired, and I hope that Jude is good tomorrow. It's hard to ask for help when we are in our situation, but I explained to Em I reallllly need some help tomorrow. She is going to do her best to hold Jude while Mike works on the room. She is so wonderful with him, and I know they will have a good day. I will do my work, and be home right after the party. I set up Em's CD player today next to Jude's pallet with the "Across the Universe CD", and he LOVES it! I told Em to turn it on if he gets upset tomorrow, and she said she would.

15 plus hours, and there is no over time

Mike had an extremley frustrating day with Jude, and when I got home I could see why. Little man was not happy on his wedge, in his bed, in your arms, or on the ground. Sentiments of Green Eggs and Ham rang through my brain. Once I walked through the door the little baby wound up in my arms. I was in charge of Jude for the rest of the night. So therefore, I got up at 7:15........it's 10:31 and I just sat down, with little recovery in site. Although, I am very lucky because many moms will not even start their wind down until well after midnight. I just get SO frustrated with our situation, and I shouldn't. I am trying to find a way to deal with my occasional anger. When I am at work Mike calls me so angry because Jude is throwing a tantrum and will not sleep. Therefore, I feel like when I get off at night I must rush straight home to grab Jude and watch him until he falls asleep. Jude did not nap today at all, so he was in rare form, and so was Mike. I did everything I could in my mommy power before I realized this isn't medication induced, or due to his disabilities.........Jude was just being two years old. Jude finally cried on his wedge in his crib until he settled down, and fell fast asleep. It was one of those nights that you are rocking yourself  in front of the baby's crib praying he calms down. Admit it, you have all been there at some point. :)

I am now feeding Jude through his tube, and he is fast asleep. I am praying he will stay asleep for the remainder of the night, and the tube will stay down.

Emily stayed the night with her friend tonight after the school districts football game. It's hard for me to let go, but I trust her...

The room, the boy, the scary teacher

When I got home yesterday Mike told me Jude had slept a lot. He and the nurse were worried he would be up all night long, but he wasn't. I think he had napped because he had to endure them putting the tube up his nose again. He gets so upset, that it just wears him out. He also coughed last night, and it sounded a bit barky, but I am hoping that was just build up in his throat. He did wake up twice last night, but after about thirty minutes he went back to sleep.

So I came home to Jude's room looking almost complete. I am just thrilled, and I cannot wait to get his sleep safe bed, and everything in there. I found some cute bear bedding on ebay, but someone keeps outbidding me. So without delay here are the pictures I took last night. Mike is finishing the painting today.

So after my blog yesterday the teacher had emailed me back that she was going to talk to the children in question, and make sure she didn't "sound rude". Well she talked to the children, but not my child. She told the other ones that she didn't mean to sound rude, but that the point still stood she needed someone responsible to make each meeting, and Emily failed to meet three deadlines. The deadlines she is referring to is the meeting I discussed yesterday, and some paperwork. At this point I was now LIVID! I sent an email to the principal . I basically said I didn't want Emily to run because that would be giving her preferential treatment due to her situation, which I didn't want. I did however want her to STOP insinuating my child was irresponsible. That I am unsure what she doesn't understand about the fact Jude was in the hospital the week of question, and then we were struggling the few days he got back. I ended the email with

"My point was I didn't expect Emily to run, but I wanted her treated respectfully. She kept repeating in her email that she "cares" about these children, but it doesn't seem like it to me. I felt as if she needed the "last word" rather than just making sure the children understood they couldn't run, but it was for reasons set forth in the bylaws, and not due to fault of their own"

The good thing here is that Emily's principal truly is amazing! He was at Emily's elementary school in third grade, and has moved to the new middle school. He really seems interested in helping the children, and genuinley interested in their education. Also, he has deemed Emily's Smile Boxes as their official charity. That is so great!

So last night the little boy I mentioned yesterday texted Emily and told her he had made a mistake. He wanted her back. She came to me for advice, but I told her the decision was up to her. She wanted to give him another shot so I helped her with a reply text. Basically she said that he hurt her feelings, but because she likes him she will give him another chance. She just expects if there is a problem in the future to ask her about it, and this is his last shot. He text back that she was now being to bossy, and they should just be friends.......sigh! I said Em if sticking up for yourself is to bossy then you need to move on!

Mike just called, and said Jude has thrown up again. He is so aggravated, and who can blame him. He has cleaned Jude up, and put him back in his bed because he was throwing a huge fit.  I think it was one of those moments that Mike just needed to walk off for a bit.

Here is Jude last night

I am sure you remember me talking about Emily being honored as a walk of fame honoree at Morgans Wonderland this year. Each year until 2015 they will pick people that deserve recognition for helping the disabled, and making a difference in their community. Emily was chosen for 2010, but due to Jude's illness she was unable to make the awards gala. Yesterday they sent me a picture of the gala, her award, and her lighted path stone that is in the park. We were so honored. You can see more on the disabled theme park at www.morganswonderland.com.

A lot of updates, and pictures

Jude threw up again this morning, and successfully threw up the tube. The nurse is there, so she, and Mike will put the tube back in about three pm. They got him on his side pretty quickly so they don't believe there was any aspiration that took place. I am getting everything in place for the surgery next Wed. I have Emily's schedule ironed out on sleep overs, and our dog Bigs below will be going to my aunts house. He really is a cootie patootie, but he looks so funny in pictures. He is only about 4 pounds, and is 4 years old. Yes, only 4 pounds........yet he thinks he is a Doberman.

Last night when I got home they had started on converting Jude's room. My great family is having this done for a Christmas present. SO my dining room is now viola......Jude's room! They should have it finished by Friday. I took a few pictures so everyone could see the before, and after. The carpenter has enclosed the area leading to the dining room, is installing the doors, and the flooring. Mike is going to texture, paint, and paint the doors. I think it will look great, and give Jude lots of room for all his therapy, and medical supplies.

After I inspected the great new room we all decided to get out for a bit. We had to run by home depot for supplies, so we decided to grab a bite to eat while we were out. We decided to try a new place in Roanoke called "Bricks", not only was it fabulous, but the owner was so accommodating with Jude. We didn't get any funny looks, or stares at his tube, but rather the staff very concerned that we were having a nice time. The owner even took a picture of all of us together (Jude was asleep).

I have been trying to lose weight, and get in shape, but I think my pictures are looking like all boobs again, ha! Darn surgeon! Anyway, we won't travel down that road again. The point is that I highly recommend this quaint little place. It has roll back windows in the front, so on a nice night, like last night the front of the restaurant is completely exposed. Downtown Roanoke is becoming like Deep Ellum restaurant row in Dallas, but with a hometown feel. I love it. Plus, it's affordable.

So Emily had a really bad day yesterday. It was the first day that I have ever wanted to just cuddle her up, and take the emotional pain away from preteen issues. First of all, she has been wanting to run for student council, and has been arriving early on Wednesday mornings for the meetings. Well after Jude's hospital stay we headed back home, and I am sure you remember we were all sleepless. Due to exhaustion I failed to get Emily, and her friends to a vital Student council meeting. She came to us the other night, and told us she didn't think she would be able to run for office because she missed that meeting. We gave her the opportunity to go to the teacher, and explain the situation to see if anything could be done. Emily did this, but the teacher told her that she needed "responsible" people to run student council that would make every meeting. When Emily tried to explain what happened the teacher responded that she was busy, and didn't have time to listen. Now let me point something out here, I do NOT expect Emily to get preferential treatment due to her situation. Although, I also DON'T expect my child to be told she is irresponsible, or have that insinuated. I also expect a teacher to treat my child with respect, and listen to what she has to say, or if busy, schedule a conference time for later in the day. To say the least, I was upset, but Mike was more upset. Mike actually got very choked up over the phone to me, saying Emily is the most responsible kid he knows, and it wasn't fair. So we have a meeting pending with the school, and had a wonderful chat with the principal yesterday. I don't think the teachers actions were intentional, but nevertheless, they hurt Emily.

Second issue. Anyone love Sex and the City, as much as me? Remember the episode where Carrie's boyfriend broke up with her via post it note? Emily got a text ...... A TEXT, last night from her little boyfriend that said, "we have to break up, sorry". I am going to cut the kid some slack here because he is only in sixth grade, but the fact Emily had no clue why.. really upset her. I reassured her that she is a beautiful young lady with a lot to offer. I also told her she is in sixth grade so just concentrate on schoolwork. I think her main concern for having a "boyfriend", was having a date to their dance in October. I assured her that sixth grade love turns like the tide, and she will have someone else in no time. I am sure we all remember "going with" someone which really just consisted of sitting together at lunch. Poor Em, she had a rough night!

Who could resist this face?



I forgot to mention that the other day at the pediatricians office he looked at Mike and said "So you put this tube in and out". Mike said "Yes I do". He replied "wow, this is really hard when it's NOT your kid, I cannot imagine when it is." Mike reminded him why we need the nurse.

Surgery Scheduled

The doctor's office just called. Jude's surgery is set for Wednesday 9/29. We have to be there at 7am for blood work, so I am assuming the surgery will be about 9:30. They said they will be moving him post op to the PICU, and the length of his visit depends on how well he responds. She was very nice, and said they will be watching his respiratory rate due to the recent lung issues. They want to make sure he responds well during, and after the surgery. We didn't expect his surgery to get moved up so quickly, but we trust the doctor. If he says he believes it's vital we get this done before the end of next week, then we believe he is right.

So no, this isn't the way we thought this surgery would take place, but we have faith Jude will pull through just fine. I will be grateful to get this tube out of his nose, and I hope Jude isn't in a lot of pain. Jude will be in capable hands at Dallas Medical City children's hospital. Their new facility is amazing. We will keep everyone updated s much as we can the day of the surgery. Right now they are saying they will put in the mic key if they can, but Jude may be coming home with just the tube at first. As long as we can control his pain, we can handle anything.

Sometimes I wonder how we will explain to Jude that he will be in pain, and if he will understand. I guess all we can do is console him with our voices. I hope he understands no one is doing this on purpose.

Look how big Jude has gotten!

update

Today was interesting to say the least. Mike, and the nurse took Jude into the Pediatrician to see what his assessment was. He checked over Jude very carefully, and said so far Jude sounded good. He said he heard some "congestion", but as of right now he is going to call it allergies. Mike said that the pediatrician seemed to understand this time how serious Jude' s situation can be. He said that as usual Jude is never easy, and that as of right now Jude isn't presenting with anything serious, but he understands that can change very quickly. He said that with the yellow throw up, he really believes that Jude IS aspirating on his saliva, and probably the vomit, but he cannot treat it until presentation. This is understandable, but so frustrating. When Mike called to deliver the diagnosis to me I was so frustrated. Mike said "Do you just want him to be sick", which made me so angry. We both calmed down, and Mike called me back to tell me what he meant. What he meant is that he wonders if it isn't easier that Jude present with a major infection initially so we will immediately know how to treat him vs playing the guessing game. He was right, it would be easier.

After I talked to Mike regarding the pediatrician the surgeon's office called. To my surprise they explained they wanted to do the surgery next week, with the fundo. I said, "but I wasn't calling for that, I was just calling to find out information on the fundo". She explained that the doctor really feels this is necessary, and he wants to get Jude's surgery done asap. I understood what she meant. He also believes Jude is aspirating, and we need to do this surgery prior to permanent lung damage. You want my honest opinion? I think the streaks they keep seeing on the X ray of Jude's lungs is already lung damage. Although, it's not affecting his breathing or pulse ox, so it's good we caught it now.

There is a lot of controversy over the fundo, and honestly I am just human. I have listened to everyone's advice. We have spread out the feeds, and slowed them down, but it hasn't helped. Someday's Jude keeps down his food, somedays' he doesn't. Someday's it's a sneeze that triggers the vomit, somedays it's just a gag reflex from saliva. Point is, from what the nurse is saying, it's not from a full belly. Jude can smile, he can laugh, but he cannot sit, walk, talk, or use his limbs correctly. I think he will in time, but right now I can understand why they are concerned about Jude's aspiration. Jude's Schizencephaly is rare, and well......and normally kids with this issue can present with various infection (for example the CDIF). We just have to make the best possible decision we can for Jude, and we think this is the right one. The surgery is correctly set for next Wed, but we all know how that can change. We pray, and hope we are making the right decision. We just want the best for Jude.

We have been told to watch Jude carefully until then, and we will. We are staying positive, and believe Jude will come through all this with flying colors. I believe the tube will make our lives easier, and Jude's too. Again, thanks for everyone's advice, and continued thoughts, and prayers.

Fundo, and possible sickness, and a congrats

Jude had a seizure filled night last night, and his left eye looked very swollen to me. I am unsure if this is a reaction to the tape from the NG tube, or if he is starting to battle a sickness again. Also, this morning the nurse said Jude tried to throw up again when she started feeding him, and threw up yellow mucus. So I put a call into the pediatrician to see if we can have Jude looked at. He has an appointment at 3pm today.

I also put a call into the surgeons office to talk to them about the fundo. I explained to her that Jude is still throwing up about every other day. She seemed to be more concerned about this than the actual fundo. She started asking me a lot of questions about his feeds, the throw up, and more. She said she is really worried he is aspirating on the vomit. She said she is going to talk to the surgeon, because they might have to figure something out. They don't want to put Jude under due to the prior illness, and now I wonder what they will do if he is sick again. Although, we cannot continue to go through a ritual of him getting sick because he doesn't have the g button. His assistant said she or the doctor would call me back before noon today.

So throughout our trials and tribulations as special needs parents, we are frequently reminded just what miracles our little babies are. I wanted to extend a huge congrats to my friend Gena whose little son Frankie walked on his own yesterday. If you remember, Mike had taken the pictures of Frankie with his walker below. I know Gena is just thrilled.

I also wanted to share a picture of Emily with you. She decided to be silly and take some "hippie" pictures of herself. I think they are just beautiful, and she is getting so big.

Have an amazing day everyone!

Zzzzzzzz

Jude was up and down last night. Then he pretty much got up at 4:30, and that was it. I am exhausted again today. I told Jenn today that one day I am going to call into work, check into a hotel, and sleep all day!

That's the plan!

Sunday

I had a wonderful day with Jude today. I gave him his afternoon, and evening feeds, and he kept all the food down. He giggled, and laughed all day with me, and I loved every second of his good mood. We even took a walk this evening until we were attacked by a swarm of mosquito's, the little blood suckers! So I turned around after a half a mile, and we headed swiftly back home as I shoo'd the little buggers off Jude's legs, and arms. As I rounded the street corner to our house Emily saw me, and she came running saying I was covered in mosquito's. She quickly got them off my arms, and chest. We live near a nature preserve so I am sure they like to swarm near the creeks, and foliage.

Speaking of where I live I thought I would explain where I work. I have new readers, and I thought it might be worth explaining. When the events following Jude's situation struck Mike, and I had to make a decision regarding who would stay home. Jude couldn't go to daycare because of his severe seizure disorder. I have a long background, and extensive education in insurance, so therefore I made more money at the time. I work for Nationwide insurance the Tim Raine agency featured at the top of my blog. I hold three licenses in insurance, and almost 19 years experience. I love what I do, and I had the health insurance, so........I went to work. Of course, I would prefer to be at home with my children, but I take pride in the fact they live a nice life because of my work during the day. My boss has been very understanding of our situation, and I worked hard at my job. Mike, and my roles have been a bit reversed in modern day "eyes", but we have made it work. Mike is now in a position to where he can look for a part time job. He worked in logistics for years, and even had a freight company until 9/11 drove it under. I think getting out of the house will do Mike wonders. I also sell Scentsy on the side (hence the picture on the right), and that's why I work on the weekends sometimes. I keep hoping we will win that $250,000 lottery scratch off, but it keeps eluding me...hahaha (jk).

So I have read on several of my friends blogs how wonderful the software on the IPAD has been regarding communication with their special needs children. I really want to learn more about this. I do wish I was here more with Jude so I can work more with him in regards to therapy, and exactly what he needs. The nutrionalist, and the doctor have both recommended that Jude have the Nissen Fundo with his G button, due to the amount he throws up. I know this is such a hard procedure on his tiny body. I am wondering what other opinions are regarding this surgical treatment? I am open to any advice. We are hoping to schedule Jude's g button surgery soon, and move on. Jude is currently taking the pediasure 1.5 and it seems to be working wonders! We had to cut out the boost because it was just to much on his stomach. I now have three cases of Boost, and I will be happy to give them to anyone that needs them, just let me know.

The walls in Jude's new room are painted a rustic red color, and we plan to leave them that way. Jude responds to red, and we thought it would be great for him. I wanted to accent the room with black bears, and Alaskan type rustic items. I thought it would be very cute! I am having a hard time finding items, but I know I will find the perfect stuff. I want Jude to have a cute room :).

The good, the bad, and the ugly

So I have a funny story, and a not so funny story. Let's start with a smile. So the nurse is here Monday thru Thursday, but on Friday Mike watches Jude while I am at work. Well Jude gave everyone a run for their money this week, and Friday wasn't any different. When we feed Jude we have to keep him still, or he throws everything up. It's difficult for most two year olds to sit still just through a few chicken nuggets, much less an hour feeding. Plus, after the feed him we have learned if he isn't still at an incline for thirty minutes.......he will throw up. This is with any amount of liquid. Coughing, and sneezing can also start a Jude vomit palooza. Jude is also very resistant to sleep, but Emily always was too. Emily pretty much refused to take a nap past the age of two. So at about 3pm Friday a little Jude (napless) got his regular feed, and medications, and Mike gave him a 1/4 a tablet of melatonin. He thought it would help Jude take a little nap while he ate, thus keeping him still. It's a natural remedy, and again Mike had the best intentions, and it was a very small amount. So I came home from work at six, and Mike said "I think I messed up!" I said "what did you do?". "Um I gave the baby a tiny bit of melatonin, and he won't wake up!!". Oh dear I thought, and I went to check on Jude. He was laying nice and comfy in his bed with his hands cradled against his chest.........snoring. I opened the blinds, turned on the lights, and we all talked loudly......nothing, he didn't stir. So I picked Jude up, and brought him to the living room........nothing, he slept soundly on my shoulder. So I just let him sleep, I figured his little body might just need the rest. Finally, I put him down on his blanket about 8, and he woke up!! I figured Jude would be up all night long, but he wasn't. He went back to sleep, and slept soundly until 5am. I am tired, but it's not bad, and I got a big giggle out of Mike's attempt to help. I guess he did keep the baby still all through his feeding, and Jude did keep his meal down.

So the not so great story. Tonight we made plans to go eat with some long time friends. I think Mike was excited at the prospect of getting out for a bit. We knew we couldn't ask anyone to sit Jude with the NG tube, so we planned on bringing him along. We were all getting ready, and were planning on meeting our friends about 5:30. That would be about an hour after Jude ate, so he should be fine. Well I was holding Jude still at an incline on my lap while Mike took a shower, and Jude sneezed. He sneezed once, and I thought OH NO, but Jude kept his food down. Then he sneezed again, and I caught my breath, but again he kept it down, and my shoulders relaxed. Then he had one of those wind up sneezes, that you know is NOT going to have a good outcome. Ahhhhhhhhchooooooooooo, VOMIT! Sheesh! The allergy medications aren't working well, and Jude was volcano Jude. I leapt into action, and so did Emily. Emily flew from down the stairs with a towel in hand to catch the second round of vomit as it flew out of Jude's mouth, and nose. I quickly put Jude on his side, and prayed the tube would stay down. Jude gagged for several minutes, and cried his heart out. Emily swept up the towels, and she called our friends to say I was covered in puke, and we wouldn't make it. She is so mature for her age. I took Jude in my arms, and carried him into the bathroom where Mike was showering. Mike knew instantly what had happened, and he just lowered his head, and began to cuss. "I cannot ever go *&^% anywhere", he said. I know he didn't mean it selfish, and who could blame him. So I ran a bath, undressed Jude, and we both hopped in the bathtub to clean the vomit off both of us. Mike was so upset, and my heart ached for him. It wasn't the dinner, it's what the dinner represented. He knew there would be other times we could get out, and that we are just thankful Jude is here, but it was still hard for him.

Mike escaped to his man cave, and stayed there. I quietly brought him some dinner I had made, and Emily quickly followed with a piece of cake. Emily, her cousin Faith, and her friend Addie had all made a yellow cake with chocolate frosting, and they were so proud. Emily said Mike at the cake before the dinner, so I knew ............ he would be alright :).

A letter from Emily

Emily had an assignment in language arts to write a letter to someone she cares about, and she picked Jude. I thought I would post her letter. Grab a tissue people, you are going to need it. I will keep her exact verbiage, so please remember she is only eleven.

Dear Jude,

Hi little brother, I'm writing, or typing this letter for you to tell you how special you are to me, and all the times we have had together. So here we go, I love the way you have taught me, and so many people in two years. You have taught me patience, respect, color, and I will never forget TIME. You are so young, and making people thing this way, you rock Jude!

You have taught me patience. When you don't want to eat, and we have to feed you hours and hours on hand bottle feedings. When I set you down my arm is strawberry pink from your head rubbing all over my arm. TIME will pass, and the pink will wear off.

You have taught me respect. You are different, that's how when I look at someone, I don't think oh that person has special needs, or that person has ugly shoes. I think, hey you know that person might be really nice, I should go meet them. TIME will pass, and I will go meet them.

You also taught me color, which I don't mean like red, orange, or yellow. I mean be yourself show your true colors, and have fun doing it, you did so why can't I. I also mean do good in everything, try your best, and do it with TIME, and effort, and it will pay off.

TIME and TIME again you have taught me the most fragile things in life, respect, patience, quality, honesty, trustworthy, and I could go on, and on, but Jude just know when I read you this you may or may not understand, bit I will, and that will make all the difference.

PS. I loved when you laughed out loud for the first time. You made me laugh so hard milk came out my nose, and then mom started laughing. We where amazed, and very surprised, good job little bro!

Love ~ Emily

She received a 95 on the paper, and her teacher wrote that it was super. I am very proud of her. Let me also point out she isn't just saying this. Emily was telling me how she and her friends sit with the special needs at lunch, because "they need friends to". She has a good heart!!

When I got home from work yesterday, my head was killing me. I tried to go take a nap, but Jude's NG tube had to be changed. The nurse, and Mike were trying to restrain Jude as they put it in, and I heard him screaming in pain. It broke my heart, and I had to go rescue him. I brought him into my bed where he finally calmed down, but we had to move him so he could be fed. His feelings got very hurt that they removed him from my bed, and I went to lay with him in the living room. The poor boy was so upset from the tube that he threw up the feeding, and the new tube, so the nurse had to start all over again. It was so upsetting. I never got my nap, but that's okay. I sat and held Jude the rest of the night while he ate, and we watched a movie. He finally went fast asleep in my arms, and I put him in his crib for the night. He only woke up a few times last night, so for the most part we all got some sleep. Jude is the master at teaching patience.

restless

Well we got sleep last night, but I still feel so drained. Not sure if it's that virus lingering, or just the stress leaving my body. I feel like I could curl up in my bed, and sleep for hours.

Jude was a handful the last two days for the nurse, and for us. Poor Charlotte looks drained whenever I get home. Jude is just restless, and doesn't seem to be able to get comfortable. He doesn't want to be on his wedge while he eats, so we have been having to hold him while the feed is pumping. If you put him down, he only wants to be on his tummy, and will throw a huge tantrum if you put him on his back. He is also a huge wiggle worm while you are holding him. I really think it's his darn teeth again. Last night when we gave him his medications I gave him some children's advil, and I think my suspicions are right because he calmed down, and went fast to sleep. I try to limit any pain reliever because I feel like he is getting enough medications, but he has had such a hard time with his teeth. I really attribute this to the phenobarbital he had as an infant. It really does harden their gums.

So I have everything cleaned out of my dining room, and Mike is going to start ripping up the carpet. I will start taking pictures so everyone can see the before, and after of Jude's room. I am very excited! Mike started his job search yesterday, and we are praying something good comes along. He used to run a logistics company prior to 9/11, but the tragedy that struck America caused his business to go under. UPS, and FED EX can survive something like that, but not a small logistics company. Anyway, I have faith he will find something soon. He is even looking at 4am - noon shifts so he can be around if Jude needs to go to the doctor. One of us has to be available.

Oprah

Twenty five years ago I was still considered "a spring chicken". I had little thought about special needs children, struggles in life, or Oprah Winfrey. I would half heartily watch her show with my beloved grandparents who raised me from fourteen on. They would turn her show on ritually, and I would lay my head down on the dust filled textile pillows my grandmother kept. I would watch the beginnings of Oprah, who was a mega super star in the making. Even at a young age I remember being intrigued at the fact that Oprah didn't focus on superstars, but rather everyday normal people. As the years passed by it seemed Oprah grew, and so did I. Rather than being made to watch her show, I wanted to watch Oprah, I even recorded her show everyday. I was interested in the amazing people Oprah had on her show, and the inspiring tales I heard. I believe one of the reasons I am able to be so strong today is because of the hope so many people had on the Oprah's show. Her show was full of many life lessons. I hate to see her show come to an end, but I am sure that twenty five years later.... the girl needs a vacay! Thank you Oprah for all the amazing inspiration you have provided me. Thank you for teaching me about the proper path to follow. I listened!

Tonight, I sent Mike to the store, and while he was gone Emily, and I gave Jude his medications, and his normal feeding. We also ran a flush of 130 MLs of water. Jude is now soundly sleeping, and I hope he will be the rest of the night. I was so happy to give Mike a break, and I think I did everything correctly. I took the stethoscope, and listened for the "bubble" in Jude's tummy from the air I pushed down the tube from the syringe. Once I heard the "pufffff", I inserted the medication trough the medication port. From there I primed the pump, and then inserted the feed tube into it's port to put the need nutrition into Jude's body. Jude was a wiggle worm tonight, but he got the full feed in prior to bed time. We learned to leave him sitting in the same position for at least an hour prior to moving him, or he will throw up.

Emily, and I also sang several songs to Jude, and I talked to him in detail about every action I took. I even noticed that Jude followed me with his eyes from one side of the living room to the other, and that is just flat out amazing!!!! I praised Jude for his good work, and I hope to see it again.

Ride a little horsey, and a perfect life

I have some stories to share with you guys today, both of which I think are touching. Last night I was playing with Jude in the gameroom while we were watching TV. I was bouncing Jude on my knee singing the "Ride a little horsey" song. Every time I would say "little horsey don't fall down", and dip my knee, Jude would smile SO big! I thought to myself, "Jude is really playing with me". I realized that sometimes I don't play the normal baby games with Jude that I did with Emily because of my ridiculous assumptions regarding his capabilities. I have sang little songs to him, but he doesn't normally respond much. Maybe it's the increased nutrition that is helping Jude be more aware of his surroundings. Regardless, I vow to play more games with him. Also, Emily helped Mike put Jude's medication through his tube last night, so she is responding better to Jude's current condition. Mike is always amazing, and makes sure Jude's feeding schedule is kept without deviation.

My second story is based on an article I read in a magazine last night. It's also based on a conversation I had with a friend. She was telling me how some friends of hers wanted their young daughters life strict, and structured. So much so they just gave their daughter her first sweets on her first birthday, which of course made her sick. She had never been exposed to cupcakes, or anything like that, so it upset her stomach. Anyway, I was telling her how things just don't always go as planned, especially when you want your life that structured. I am not knocking how they choose to raise their child, just shaking my head a bit because I know first hand how those great plans for a child can change. You can plan all you want to, but then life has a way of slapping you upside the head. I started telling her about the article I read last night regarding a mom who was planning her second birth. She was a mom that didn't want any medication for the pain, a natural birth, with a doula. She had planned everything meticulously from the beautiful smell of lavender burning, to the relaxful candles, and soft music playing. She had dreamt of how she would introduce her young daughter to her newborn daughter, and how wonderful their life would be. She described in detail how painful the contractions were, but how she knew her body was just making progress towards it's ultimate goal. Then the delivery........it wasn't what she expected. She knew immediately when her daughter was born she had downs syndrome, and she was in a panic. She said she cried for hours over the loss of the daughter she wanted, and mourned for the perfect life she dreamed of. Then she finally realized that this little baby had already accepted her as her mother, and was begging for her to love her. So she did. I was touched by that story, and related to every feeling she had.

The tube is getting easier to handle, and our life is moving forward. We are learning to adapt, and are watching our little baby grow.

The weekend update

The weekend was good. Mike, and I had a nice time on Saturday out by ourselves for awhile. Mike joked around a lot, and we both seemed to just relax. Later that afternoon we went home, and played with Jude. He was a good boy most of the weekend, and was a cuddle bug. He is also what I now deem my "plumpy pumpkin!". According to the doctor this morning Jude has already gained two pounds, but he needs to go to the bathroom so I doubt that is accurate. The doctor told Mike that she does hear crackling, and rattling in Jude's lungs. She suggested we get another chest x ray to make sure the infection is gone. Jude is no longer running a fever at all, so I think this is just from the tube.

Yesterday we marked the opening day of football season. I made a wonderful lunch consisting of teryaki glazed Salmon, stuffed sweet peppers, and spinach with cherry tomato's drizzles in olive oil, and balsamic vinegar. I was rather proud of my healthy meal, but Mike walked in and said, "What the He$$ is this?? This isn't FOOTBALL food, are you trying to kill me?". Although, he ate it all up.

Jude got ready for the game too, but unfortunately his team spirit couldn't save the game.


This is a look at Jude's pallet we made him while he eats. He is on a large wedge, with the bobby under his tail, and pillows for him to rest on. He seems to really like it.


We have started clearing out the dining room to convert it into Jude's room. I am really excited about the fact he will have his own room near us. We also put in a call regarding a sleep safe twin bed, and they are working on getting us one. I plan to put shelving in Jude's room to store all his medical supplies. I feel like this will make the house more manageable. I am lucky we had this spare room, and for the family helping us get this done.

a little update

Jude looks a lot better today, and rather plump for a change. He has a terrible cough still, but the nurse is here watching him. I made myself get up this morning, and go for a bike ride, and I am glad I went. It was a struggle since I had not worked out this past week, but I believe exercise helps your mental state.

Since the nurse is here today Mike, and I are going to get out for a bit. We are not used to leaving Jude alone, but I know he is in good hands. I think we need some time to decompress.

Jude has a follow up appointment on Monday to check to see how he is doing. I will be anxious to hear what the doctor says.

I am proud

I pretty much had a huge melt down today, and you know what? It felt GOOD! I just blew up at work telling my friend Jenn everything regarding my feelings. Fleck, Sarah, Docia, and more listened to me freak out, and I am grateful. When I got home tonight I felt a bit better. I was determined to give Jude all his medications through his NG tube tonight. He has 5 different medications, and I slowly put them into each tube. I then primed the tube to get out the water from the prior flush, and then put in the milk. I then primed the tube again with the milk, and set up the pump to feed. Jude has been "eating" for about 45 minutes. It was emotionally hard, but I got everything set up. Jude is more smiley today, and looks more plump. He is currently squealing at his "Scout" puppy that Gena bought him.

So Emily got asked to the dance tonight, and she is very excited. My little girl is growing up....

Tonight I feel so much better, I am hoping tomorrow is the same. I also hope Jude is feeling good tomorrow.

Fyi

As a follow up to my blog I posted earlier, let me say this. Don't take anything I do, or say personally right now. I am angry, and I need some time to chill out. I have been positive since April of 2008, and it's also been since then that I have had a full nights sleep. Therefore, I am tired! I appreciate everyone's thoughtfullness lately. I appreciate the visits, the calls, the advice, the reassuring words, and the reaching out. It's been a long time coming for me to get just really really pissed off, but I am. It's a rarity, and I just need a few days, or maybe even weeks to just figure out a good balance of my emotions. Doesn't mean this is not me, doesn't mean I am changed, or depressed, just working through all this. I always prevail, and I will again.

If I lash out at you, it doesn't mean I haven't appreciated all you have done for me, it just means you were in the right place at the wrong time (insert evil grin here... As I always say, you have to have humor).

Now, I am going to pull up my picture of Maui, and stare at it while I work.

Lots of updates

Well tonight was a reality mixed with being thankful, and angry. It seems our lives are a combination of mixed emotions on a constant basis. We are thankful, and grateful that Jude is with us! However this NG tube is proving to be a source of great anxiety, for me anyway. Jude threw up again tonight. Thank goodness for my old softball background because I proved to be a great catch, until Jude threw up the second time. Mike is amazing when it comes to inserting the tube, and setting up the feeds. It's almost become mechanical for him, but I know it truly isn't. He has stepped up in a way that has made me admire him so much. After Jude threw up Mike scolded me about the way I was holding Jude, in a nice way. I learned I can no longer hold Jude like a baby because it can cause him to gag, and aspirate. Home health had been out today, and explained all the rules to Mike. They said they didn't recommend we travel very far with Jude in the car because of the possible aspiration. When we hold him we must keep his head upright, and he cannot tip his head back. They have also recommended a mattress that is elevated to keep liquids out of his lungs, and for his feeds. We have a feeding chair, but Jude doesn't like it much. We are still searching for the best way to restrain him when inserting the tube. It seems Jude gets really upset when we remove the tape on his face securing the tube down. We have the "sting ease" for the tape, but it doesn't help much. I think it's just the sensation of having someone mess with his face that annoys him. By the end of the night I was in tears again because I feel like everything has changed, I cannot even hold Jude in our favorite spot on the couch. I know this only temporary, and I am sure things will be better with the G button. I forgot to mention that while they were training Mike on placement of the tube, they explained the risks (of course). After Mike placed the tube the nurse let out a sigh of relief, and told him how her other dad that morning had stuck the tube right into the babies airway, and the baby turned blue. So she was very happy Mike had listened, and followed all the directions the best he could. I felt terrible for that other dad, I bet he is afraid of the tube now.

I wrote the above last night, but then I had to go because Jude was having issues. So I will finish this blog up today. Jude did pretty well with the throw up last night he got me, the couch, the blanket, and more before he was done, shoo! On top of that our dog was acting very sick, but I have narrowed his issues down to anxiety. I am not sure why I was so emotional last night, but I was. I was crying at everything, it was like I had the baby blues all over again. Mike would talk to me about Jude's situation, and I would cry! I would see a pampers commercial, and I would cry. It was borderline ridiculous, and I am just moody. Actually, I am just angry! Mike said that for once he is up, and I am down. He explained he sees this as a new beginning, and something to keep Jude here longer. I see all this as a ticking time bomb, but I will work past that, I always do.

So Mike is going to request a new suck swallow test after the NG tube is out. Although, he said that the nurses had assured him Jude was relaxed during this past test. I could be wrong, but I believe the constant seizure activity has caused the aspiration. I think Jude's body has forgotten how to eat correctly. I did have to tell you one thing we have noticed that shows proper brain activity. Jude has learned to reach up, and try to pull the NG tube out of his nose. He is also bringing his hands to his mouth, and sucking on his fingers. I think he misses his bottle. Judes cough is still very prominent, and he felt a bit feverish again this morning. I do believe the antibiotic is wiping out the double pneumonia, but the viral portion is lingering. Jude also keeps sneezing, but I think that's just the tube. I told Mike it's probably like having a cutip constantly rubbing your nose, which makes you want to sneeze. I want to sneeze just saying that.

So I got up TWELVE times with the little booger last night. He would twist his body around, and somehow get his face backwards on the padding of his bed. I would have to turn him around, straighten his legs, and cover him back up. We have him on the wedge, with the boppy around his butt, and his hands covered so he doesn't pull the tube. He is a wiggle worm though, and finds his way out of our make shift restraint system. Mike had stayed up after Jude's last feed listening for Jude in case he threw up. Mike finally came to bed about two am, and that is when I took over thus explaining my twelve trips to his bed. About six am Mike woke back up, and took over with Jude, and at that point the boy was wide awake in his bed. Our conversation went something like this.

Mike "He is going to kill us I think"
Me: "Yep"
Jude "Ieeeee"
Mike: "It's like we are getting enough sleep so we don't go crazy, but our bodies hurt"
Me: "Yep"
Jude: "Ieeeee"
Mike/Me: "Little stinker!"
Jude: "Uuuuhhh!"

The nurse is not there today, so it's Mike's first day alone with everything. We should have her back tomorrow for awhile. My aunt is going over to visit Mike, and his parents are stopping by. Before I left today he said, "Babe, I promise not to call screaming at you today because I am frustrated". awwww!

Mike putting in Jude's medications

Jude's loaner Kangaroo pump. We get the Entralite soon.

Dad, whatcha doing?

Jude's adorable birthday cake we had gotten to take to his party. We sent it to my cousins to enjoy, and they brought us the top to the hospital.

Emily seems to be handling things pretty well. She has been a bit more distant from Jude, I think this all shook her up a bit. Although, last night after he threw up, and we removed the tape, she got down to Jude's level, and helped console him. Poor Emily has had hours of homework every night. Last night she was up until 11 finishing her homework for today. I don't understand why they expect kids to go to school for 8-9 hours a day, and then send them home with 2-3 hours of homework. It just makes no sense!