Wednesday, October 30, 2013

Jude, Emily's is ready to go, and the stupid Halloween letter circulating

My head is full of a lot of topics right now so bear with me as I try to sort them all out.  Jude is doing well. He is full of smiles and has been very talkative lately. He is still having some issues sleeping at night so I still resemble a frizzy zombie with frumpy clothes. Jude is still scheduled for his Botox injections and then he will have a follow up with the orthopedic doctor. I am still up in the air on the surgery. There is a part of me that doesn't want to subject him to something so painful, but I worry about the future pain he may endure if we don't go through with the surgery. Jude has his Halloween pajama's ready to go tomorrow. He is going to be a "Fire Chief".

Emily is growing up very fast and has a full blown teen attitude. However, she is still a great kid. She has a steady boyfriend who seems very polite, funny, and has huge goals in life. So I am hoping they stay responsible and remember they have a bright future ahead. Emily has exactly 30 days before we leave for Texas Teen USA. Her head shot premiered the other day on the website. You can go to and click on contestants. Emily is Miss Tarrant. Since her contest is only 30 days away Mike and I talked about what it takes to get ready in life for any type of major goal. In this case she needs to be interview, swimsuit, and evening gown ready. We talked to her in detail about how eating well is good for your body and your brain. We advised her that if she learns proper eating habits now then her body will thank her later. We tried to convince her that what you put into your body is what you get out of it in regards to fuel, looks, brain power, and more. Of course, talking to a 15 year old about this subject without her thinking it's about body image is a tricky thing to do. However, I think we got through to her. I explained how her boyfriend drinks a lot of hydrating liquids and eats protein to prepare for a football game. He does that so his body won't dehydrate and he can give the best he can to his team. So I asked her "what do you think would happen if you cut back on sugary Sprites and pizza and replaced them with water and increase protein". She understood it would mean more fuel for her body and better brain function. Of course a few minutes later she was asking for Starbucks :/, but she is 15 so that's expected. I have always made pretty good meals for our house, but I was to reiterate the fact that proper eating leads to a healthy lifestyle.

Finally I am sure many of you saw this ridiculous flyer that a woman in West Fargo is passing out to children who trick or treat at her house that she considers "obese".

Shaking my head. It's hard to find a proper response to this letter. I sometimes wonder as a society as a whole why we find the need to be judgmental and tear people down vs building them up. We women are especially guilty of this. Even in our friendships we have habits of belittling our girlfriends and judging them VS accepting them for who they are. We as women should lift each other up as sisters not tear each other down in any negative fashion. So when reading her letter I just sighed. I know in her mind she thought she was doing the proper thing, but basically she is just a big bully. We talked to Emily (who is skinny as a rail) about proper eating habits because this is healthy not due to weight. This lady is pointing out to these children in front of their peers and family that they have a weight problem. People like her can never understand the suicide rate in pre-teens and teens either and see they may be part of the cause. She could have simply handed out healthy treats, tooth brushes, or little toys. There was no reason to single children out and call them FAT! It's just unacceptable regardless of how much she has convinced herself she was going it for the good of others. No excuse.

Saturday, October 26, 2013

Jude's update, moving on, and Emily's charity.

Jude had a pretty good couple of days. He did throw up a lot of yellow substance today, but he is smiley and temp free. He is very smiley and a happy little boy lately. I am very thankful he is here with us!! Last night I posted a video on Facebook that I would like to share. It truly shows he knows what "I love you" means.

So my entire family is coming in town for Halloween. I am SO excited to see everyone. We do a giant haunted cemetery fundraiser every year for Emily's Smile Boxes. We also pass out over 200 brochures to families explaining what Emily's charity is about. Hopefully we will get some donations, gain some box makers, and inspire some children. Her charity has really been touching a lot of lives lately and it makes me very happy! There is an amazing video at!/emilys.boxesnonprofit?fref=ts . Emily has a 12/8 Christmas box party made and the day after Christmas she is going to visit the children at Scottish Rite with boxes and her Miss Tarrant Teen crown. Very exciting!
Lately I have really been struggling and grieving over the loss of a friendship. I finally started really talking about it yesterday and touched on it on Facebook. It's always been very difficult for me to just walk away or cut someone I truly care about out of my life. Therefore, I can't wrap my brain around someone who can. However, it's been a discovery for me that this is just a trait that some people have. It's not a bad trait. In fact, I think I wish I possessed it sometimes. My husband can do this and not think twice about someone if he feels they are unworthy of his loyalty. Anyway, I would like to really thank my husband, family, and friends for being patient with me. Some didn't fully know what was happening and were just simply patient and supportive. My husband knew everything and has really been there for me. Last night was a bad night and he just simply hugged me...........then looked me in the eye. He pointed at Jude, Emily, and himself and said "This is what's important.......these people will always love you no matter what". How profound. I feel SO much better today and I am ready to move on and forward. No more looking back! It's time to get busy loving the people that love me back.

Make it a good weekend!

Thursday, October 24, 2013

A relapse or just a bad day?

Tuesday night I noticed that Jude had a pretty wet cough again. However, he was VERY smiley and had no temp. So I just held him a lot and when he was laying down I kept him at a 45 degree angle to keep anything from settling in his chest. I informed Charlotte the next morning of my findings. Later in the day she sent me a picture of Jude smiling very big and said he was doing very well.

However when I got home Charlotte informed me the rest of the day didn't go as well. Jude got toned out and ended up falling asleep during his school hour. He also had an elevated temp (not a high fever just elevated) and his respiratory rate was high. I also noticed he was beginning to look pale again and his cheeks were flushed. I watched him the rest of the night and he started smiling again. He had a decent night and only woke up a few times. My aunt pointed out that the antibiotic is probably just now leaving Jude's system. We knew the Empyema would take a long time to go away so that may be the culprit. Charlotte also mentioned that since he is still recovering he will have good days and bad days.

We will keep a very close watch on him and this time I am pushing whatever my gut instinct says because it tends to always be accurate. However, I am really praying that he doesn't begin to digress and have to go back to the hospital. My main concern is Jude, but the thought of going back makes me want to hurl! So I am saying big prayers it was just a bad day and he will continue to improve.

Wednesday, October 16, 2013

An MRI for Jude.

So Jude's neurologist called me yesterday while I was at work. When I picked up the phone I was surprised to hear his voice. He wanted to go over the findings from the other neurologist and also to request a 3T MRI for Jude (fabulous let me find the time...insert googly eyes). I love Jude's primary neurologist. He is so smart, kind, and when he talks to you he inflicts a type of confidence in his voice that you just feel comfortable accepting his answer. He said the other neurologist could be right that Jude had a neuronal migrational disorder. However, he said that a well known cause of schizencephaly is a stroke or vascular bleed. He mentioned the in utero MRI  we had and said that could prove the stroke or could just show bleeds where bleeds sometimes occur in a fragile babies brain during development. He said he wants an MRI because he needs one of Jude's "adult" brain. Did you know the brain is complete by Jude's age?

Anyway, he said the MRI is needed, but will also tell us more about the cause of Jude's condition. He said if it is a migrational disorder there is no way to tell if it's genetic or not without an MRI. However, he still seemed to lean towards the stroke. He also may just never know and it could have just been a fluke situation. That's what I figured.

So I need to figure out a time to take off work when I have no further vacation time at work to get the MRI completed. I know this will help the doctor further treat Jude and possibly open up ideas to stop his startles and decrease seizure medications.

Also, I read this blog today on forgiveness and I really think it's worth the read:

Friday, October 11, 2013

Jude's doctor visits and updates

Jude had three doctor appointments yesterday. The first visit was a follow up with his regular pediatrician to see how his lungs are doing. Mike said the doctor was amazed he had double pneumonia and an empyema. She said those are very difficult to get over and she was impressed Jude fought through it. She said his lungs sound really good and she thought Jude looked well too.

The next visit was with a new neurologist that will be giving Jude his Botox injections for his legs and the pain he has. They scheduled the injections for 11/19. Even though we will be staying with Dr Riela for Jude's seizure management the new neurologist reviewed his file anyway. He had access to the 3 month MRI that was completed at Cook's hospital when they gave us the dreaded news that Jude would have lasting medical problems. Anyway, by that MRI the doctor told Mike he believes Jude didn't suffer a stroke, but had a neuronal migrational disorder. However, I pointed out to Mike that the new doctor did NOT have access to the in utero MRI which clearly showed the two dark spots (blood) in the choroid Plexus which led that doctor to assume there was an ischemic event (stroke). She said by 3 months the blood would have dissolved. However, if for some reason this doctor is accurate then there are basically two causes Genetic (most are) or something was just wrong with Jude's biological makeup. In the grand scheme of things what happened to Jude doesn't matter it's just taking care of him now. However, if this was genetic and Mike and I were considering having another child........well that's scary!

The last appointment Jude had was with his GI specialist. Mike said the doctor was so happy to see Jude. He said it had been a long time and he was worried about him. He did increase Jude's formula some so Jude will be getting some more nutrition now.

I had a terrible dream last night that I was back in the hospital with Jude. The nurse raised Jude's bed up to much and I saw Jude starting to slide off the bed. I was to far to reach him and the nurse just stood there. I sprinted but couldn't catch Jude before he hit the floor and his head. He had a horrible bruise on his head and I kept trying to tell everyone he needed a CT scan to check for a brain bleed. It was terrible! I have no idea what it meant, but it was a scary dream! Maybe it's the loss of control from not being with Jude everyday like I was when he was sick? I don't know.

This weekend Emily will be turning 15. I am so proud of her and the young lady she has become!

Friday, October 4, 2013

Jude's update at home

Jude seems to be doing pretty well. For the most part we are keeping him in his bed since it can keep him at an angle. However, he is also spending some time in his tumble seat and on his wedge on his favorite futon. When Jude starts getting very pale it means he is weak and needs to go back to his bed. We have also learned he needs at least half his feed prior to giving him the antibiotic or he will vomit. Tonight I think he had to much stimulation and when I laid him in his bed he did start to gag on mucus and tried to vomit. I don't care how sick you are.........if your child starts to vomit after having severe pneumonia you can sprint from room to room in about 2.2 seconds!

Jude's poor hands and feet all have the bruises you see in the picture because his IV line blew several times. They will get better, but they sure don't look friendly.


Overall I think Jude looks much better! My adorable friend Gena said Jude should be a Ninja for Halloween because he fights and wins everything that comes his way. He has had pneumonia, C-diff, The flu A and B, A pleural effusion, MRSA, and more but he straps on his gloves and kicks booty.

We do have his pulse ox machine on and set to 88 for alarms. Our night was rather sleepless becasue he kept dipping but we could always get him back to normal. On top of me being EXTREMLEY sick.....Mike didn't get much sleep and is rather grouchy. I am not sure Emily understood how sick I was until Mike said tonight, "Emily your mom has a serious upper respiratory infection". Darn hospital germs! My husband just ran to get me Pho! I think it will make me feel much better! I sound awful, but I honestly feel better.

I am glad to have my family under one roof :). Tomorrow is Emily's birthday gathering and I sure hope we get to go. Again, I want to thank everyone for being so understanding during this recent visit. It's the worst illness he has had. I appreciate my friends that understand how stressful things can be, my family for always being there, and my work for their understanding.

Thursday, October 3, 2013


Jude is HOME! We are so happy! Make no mistake that Jude is still VERY ill. The empyema will take a long time to heal per the doctor. We have him in his sleep safe hospital bed at the house and he is sleeping soundly. Charlotte got there about 10:30 and I know he is in good hands! So I drug my sick carcass to work!

This has been a very hard nine days! I look at people like Aidan's mom and I have to admire her. I was worn out with the hospital, the traveling, and the very little sleep. We get little sleep anyway, but that was VERY little sleep. So again I admire you parents that are in the hospital for months and years.

The doctor said this fight at home will be up to Jude. We are all watching him carefully for vomiting because he can aspirate very easily. A minute amount caused the aspiration pneumonia he got in the right lung the other day. Jude will also be on antibiotics for the next fourteen days. We understand this will also make Jude for susceptible to additional respiratory issues in the future. However, we have him with us again and we are so glad! I cannot even begin to thank everyone so much for all you have done from us. From the food, the gas cards, coming to see Jude, the balloons, sitting with Jude, and more. We have one amazing support system!

My boy is home!!!!!!

Wednesday, October 2, 2013

The update and a possible jail break!

Mike stayed with Jude last night so I could get some sleep. I woke up even more sick than I annoying!!! Anyway, they pumped Jude full of oxygen and antibiotics. If he can hold his oxygen today and through the night he will get to go home tomorrow! I am praying this will happen because we are pretty tired of the hospital. The doctor said it will be up to Jude on how well he does recovering at home. It will be up to him to fight through this and not come back to the hospital. The doctor said he really doesn't want him coming back in worse shape.

So let's pray Jude holds those oxygen stats today!

Tuesday, October 1, 2013

Tuesday afternoon update

Well when my aunt got here Jude just looked terrible. I could tell she was really worried and I was worried too. So I just sat down on the couch and said I wasn't going to leave. I asked my aunt if she was comfortable enough staying with Jude for a few minutes while I made some calls and grabbed breakfast, and she was. I walked downstairs and called my work and just broke down in tears. I explained Jude wasn't doing well and that I just couldn't leave him. They were understanding and I have been here throughout the day. One day my house will be paid off and I can just do charity work and care for Jude. However, until that time I am abundantly grateful for an understanding boss and amazing crew!

Jude slept until about 1pm and he was up until just a few minutes ago. He pinked up during those few hours and I even got a few laughs. It's so odd how we go from Jude looking just terrible to looking better. He is just my little yo yo. I was actually really worried this morning. I tried to hide it, but I could tell in my aunts face she was worried too.

My sister brought me lunch and my dad stopped by to see Jude today too. I will pray that Jude only continues to improve. He is still on oxygen at this time and is holding at about 94. It's not the best rate, but anything above 91 is their goal.

Here is a picture of Jude from this afternoon. You can see how pale he is, but he still manages a smile. He is such a trooper.

Jude's not so great update.

Well Jude just has a mind of his own. The doctor saw the chest X ray from yesterday and was comfortable with letting us go home today, but when he got to our room he found Jude on 100% oxygen. Jude did NOT have a good night. This led him to believe that Jude is not handling the new pneumonia in the right lung as well as he hoped he would. Which means Jude's lung capacity is not working as well as he thought either. So Jude is still here. The doctor said if he turns around and it looks like we can go home on just a small amount of Oxygen then he will allow it. He said we are medically educated enough to know when it's an emergency and to come back. However, now his concern is Jude may get worse before he gets better so we are camped out in room 5406. We are watching how Jude reacts and watching his oxygen levels.

I have to go into work for a bit today. I am still sick and the traveling back and forth is getting to me. I wish I had a week to not worry about work, but I don't think that's a possibility. My aunt is coming up to the hospital to sit with Jude today and I am not sure what we will do tomorrow. Mike's mom can probably come up here, but she doesn't see very well. So we will figure it out.

I had a picture for you but my phone isn't wanting to connect to the internet so I will have to add it later. Again, we appreciate everyone that has been helping us out with Emily, staying with Jude, and all the food!