Jacob, Why must you tease me?

Jacob got his new NEW glasses yesterday. He take them off still, but he seems more comfortable.

Sometimes I just don't know what to think. At moments he is stubborn and does nothing, he is spastic, arching and crying. Then he has moments of calm. During these moments I see glimpses of what his potential is.

Examples: Today he sat up with legs wide on the floor and his hands down supporting his body with the physical therapist behind him. He was supporting himself and she was only there to catch him when he decides to go all spastic and fly back or forward. During these few minutes he looked around the room, held his head midlined, and even looked back at the therapist and smiled.

I took him to the park and 1 he kept grabbing the straps that supported him in the "special needs" seat. Jacob never grabs and he also decided he would eat it (eww!) 2. He kept taking his glasses off. Not just racking them off his face, but grabbing them with his hands and holding them. I caught him fondling them more than once while we were at the park.

Tonight in bed (which by the way he was in bed at 7:30 yea for me!!!) during one of his wake ups. He was totally relaxed. he was not doing any of his crazy arching, face scratching, balled fist stuff. He also was not maintaining his usual arched back hands at the face posture. He is actually rolling himself to his side and back to his back on his own. He is putting his hands together and leaving them open more often.

Now onto the frustrating part: He will show us  that it is possible for him to do these things. He will do it for a few minutes, a day, and hour etc...then he wont do it again for a month UGH! Like he won't eat solid food for me anymore again, he continues to eat approx 4 ounces at a time and does not chock or gag a whole lot, but also makes some horrible noises when he eats the speech therapist would not approve of. He also refuses to suck a pacifier anymore (hence the reason I can't get him to eat solids) If you put it in his mouth he will looked at you all cross eyed like and make noises in Jacob language saying "Take that damn thing out of my mouth I don't want it!"

His tone today has been really good and Tuesday he was so tight. Oh another thing he only does when he feels like it is taking steps in his walker. As the therapist puts it "he is very random" I had him in the walker Tuesday night and he was cursing at me in Jacob language. Throwing his head back like he could not hold it up, and making this horrible strider noise like he could not breath. I personally think he know I will take him out when he does this so he continues to do it. Then all of a sudden when I was not paying attention to him I hear this BANG! I look over to find Jacob laughing like he was being tickled because he had just walk all the way across the dinging room/ playroom toward me and 2 of his wheels of his walker had fallen down the step into the living room. He thought it was the funniest thing in the world. Then he went back to his screaming like he could not breath until I picked him up.

Dang why does he have to be all de-ta-de like 98% of the time then, be like ha ha I can do it, I just don't feel like it.

Okay I am ending my rant and yes blah blah blah I know he can't help it and it has to do with him neurologically and so days may be easier than others but I really freaking need a magic wand to make stop all of this flip flopping. I'm not asking for him to be "normal" just getting better. Oh and I am on a new mission to win the lottery LOL so I can get Jakepoo, Ava, and Andrew everything they could ever need. This meaning mainly when Jacob is 3 all the programs for disabled kids mostly go bye bye and it turns into sorry for your luck deal with your kids with no financial support and BTW all the cool stuff your insurance won't cover. :-(

My daughter was a very BAD girl today!

Time for a few updates. We will start with the hyperbaric therapy. We did our 8th dive today. Jacob seems to be tolerating them well. Still the one thing that I have blogged about before is still thing thing I am entirely tickled about. HE LOOKS AT ME! I MEAN REALLY LOOKS AT ME!. I love it. The changes I have seen so far are minimal and people that are not around him every day may not notice any change, but. He seems to me more cognitive. He is less spastic, I talk to him he looks at me, not past me like he used to. Before glasses/HBOT he usually only turned his attention toward the brightest light in the room. Not that he still does not do this, but when I am holding him. He looks at me, he looks right in my eyes even without his glasses on. He was standing in his walker today w/o his glasses and he turned his head and followed me with his head/eyes everywhere I went. He continues to improve with his head control. Especially standing in his walker. Anytime his head does fall back. He corrects himself and puts his arms up on his hand grips to support himself. The EI was working with him today and she said she felt that he had better tone in his lower back, that he needed less support while she was trying to get him to sit. He is feeding very well, and his sicky only lasted a little more than a week vs. A MONTH! Could it all be coincidental? Yes, but I am still going to give it a chance. The people that open their home for this treatment truly believe in its benefits! We still have the rest of this month and all of next to see what happens. It hard to say what is really helping he got his glasses and started HBOT the same day, but he only wears the glasses a few hours a day (HE HATES THEM) and I still see an improvement when they are not on. I did go to Wal*mart today and picked out a new pair of Diego frames for him. the medal kind that hook behind his ears and have a nose piece to keep them in place. The frames and lens were only $107. It will be so worth it not to wear the "silly band" goggle glasses that don't sit right on his face and leave impressions in his forehead.




These are the glasses we bough him (I think) They should be ready in a week


Andrew is doing WONDERFUL! He continues to pull up on everything. I think he spends more time standing and hold on to furniture then he does crawling anymore. He breaks my heart when he stands up in his crib and makes the cry sad face when it is time for bed. :-( He has finally learned to sit up. I find him sitting up all the time now instead of flopping on his stomach all the time. LOL I've been trying to teach him to clap his hands together and instead he smacks his hands on his tray (while sitting in his high chair) and he claps his feet together LOL!!! Anyways he is doing wonderful. He is even saying "da-da,da-de-da" even clearer and still follows me around the house crawling and usually crying saying "ma-ma-ma" Tonight he was doing his tired cry and said "night-night-night" with a nuhnuhnuhnuh at the end :-)

So now onto why Ava was very BAD today!
Ava wears pull ups when she sleeps still. She has a very annoying habit of dropping her pull up where ever she feels lead. Usually this occurs in the middle of my bedroom floor, or on the sides of the bed so that when you go to get up in the morning you step in a nice warm wet diaper. She also decides that he 1st morning pee has to be on the floor and not the toilet most of the time. Nothing like stepping in a warm pile of piss in the morning. I spank her, yell, bribe, talk nicely etc. She the gives me her "I'm sorry I hurt your feelings mommy and pee pee on the floor." BS! I decided today! 2 free toilets in the house this morning. She was pissed that she had to go to school. we even woke up late! She usually make it in our room half way though the night and that is where I found her when I woke up this morning. I went to the bathroom to get dressed this morning, Jack went to the kitchen to get babies bottles and meds ready, and Ava was still laying in bed. I come out and hear Ava in he "club house" (this is the small space in between the wall, Jack's side of the bed and his night stand) and Ava's diaper was in the middle of my bedroom floor. I walk over to Jack's side of the bed to see what she is doing. Ava does not see me. She is laying on her back with her butt under the bed. She is covering herself with the bed skirt. I ask her what see is doing. She is startled and jumps a little making the bed skirt move. SHE WAS FREAKING PISSING UNDER MY BED! WTF WHO THE HELL PISSED UNDER A BED! WHAT A BEOTCH! THERE IS NO WAY THAT WAS AN "ACCIDENT" SHE DIS THAT ON PURPOSE. HER ROTTEN LITTLE ASS WAS NOT GETTING HER WAY SO I GUESS SHE DECIDES TO TEACH US A LESSON BY PISSING ON OUR STUFF ON OUR BED! Lucky for me it was Jack's stuff he stores over there not mine I snatch her up, beat her ass, and make her go sit on the toilet. Then of course she comes out withe her "I'm sorry" stuff. Then I explain to her that she can't do stuff like that because she is mad etc.. the she repeat it back to me in that I didn't know tone of voice. Now tomorrow I bet I will find a diaper on the floor and piss somewhere when she get up. Is it wrong to rub her nose in it? J/K I seriously don't know what to do about it. I'm going to start taking stuff away from her that she likes a teenager if this rebellious disobedient behavior does not stop! I was just stunned that was the 1st time I seen her do something so disrespectful to us that obviously took thought process to conceive the idea to pee under the bed onto someoneelses belongings!

Okay I think I am done with this rant now. :-)

Not sure if I posted any of these already They were taken By Tamara Gibsob from Fishey Face Studios



My Angel Ava



My model :-)

My babies Andrew, Ava, and Jacob

Jacob and Ava. She loves him.

He thinks he is an adult LOL

Sleeping Angel

Happy Boy Jacob

Shhhh! He's hunting rabbits LOL

Now he going to catch them. :-)

and the sicky spreads

So, I'm home with 2 sick babies and Jack is at St. Joseph still with our other sick baby. Jacob did not tolerate feeds yesterday (well, atleast 1 of them) so this morning his actual GI doctor came in to see him. he is going to be on continuous g-tube feeds today at 40cc hr and nothing by mouth and I guess they will move up from there. There is no end in site for him coming home as of today. She said they are going to keep him until he tolerates full feeds w/o vomiting. The only things that came back apparently is Rhino virus (a cold) and herpangina aka Hand, foot, and mouth disease (throat infection w/ blisters) both are viral things that usually school age kids get and is very contagious from one kid to another. Seemingly this is why Ava, Gavin, Michael, and Andrew are also all sick with fevers and barking coughs. With Jacobs CP and uncontrolled GERD simple viral infections were just to much to keep him out of the hospital :-( Oh a good note, even with all the vomiting there was no signs of any aspiration pneumonia.
I have called off for the weekend, so I will spend the weekend giving breathing treatments, sucking snot nose, and disinfecting the house over, and over, and over again. I swear these kids are going in bubbles!

We are now up to 3 hospitalization in 6 months

The day started out not so bad...Jacob had a better night and actually slept. Yesterday he held down hardly any of his feeds . So, a late night call to the on call pediatrician and a bottle of pediatlite and we were good to go. I started him on a continuous feed of pedialite at 30cc an hour after he went to sleep. Prior to bedtime, I was on my 7th vomit bath of the day from him. This morning i finally got ahold of the GI doctor. They had me come in and worked us in for us to see the nurse practitioner fairly quickly. After explaining this recent illness to her I got the dreaded words, "Well, I think we are going to admit him to give him some fluids and work him up to see what is going on." I seriously was expecting to go and them be like here is prescription number 11 to add to your list.

She tells us this as Jack and I have both babies ,Ava and my nephew Gavin who are all also ill. Gavin and Ava were in the process of seeing who can hit who harder and scream louder. We wait and wait and wait in the room until they had a bed for us. Then we waited in admissions for another life time, then finally get the okay to go our room. Room 803 we get there and they are still cleaning it, so we go to the lobby and wait some more. Gavin and Ava continue to try and injure each other and are now screaming they want purple candy...referring to the purple pack of skittles in the vending machine. 30 minutes later the room is ready.

We go through all the admission questions and get Jacob to sleep. At this point we are waiting for my sister Tricia to get mine and her spawns. We attempted to feed the kids. Jack ditches me to "move the cars" where he apparently meets up with Tricia and they went and visited with Jacob while I unknowingly waited in the cafeteria with THE SPAWNS and no cell phone! BTW at this point Ava and Gavin are biting each other. Oh and while we are eating Ava points out to me this larger man with his bottle of hot sauce who just sat down to eat. She points with her finger "Mom that is a big guy. Why is he so big? He eats ALOT of food! Mommy he is fat! The guy looks over at me and asks what she is saying. I WAS SO EMBARRASSED. He told her he was big because he was a football player :-)

Tricia takes the SPAWNS home. i go back up to the room to find nurses sticking my baby with needles. 8 tries later they get the IV in. The on call seen him to. His official diagnoses for admission was aspiration pneumonia, but the doctor seems to think that all his recent issues are related to a viral throat infection. He said it explains all of his symptoms. Nothing they are doing is going to stop the non stop daily reflux though. I discussed with him about a nissan, but he simply said, well maybe one day he will need it. So apparently he will just let him continue to reflux and aspirate into his lungs until he gets REALLY REALLY sick. When is enough enough. I don't want my son to have a major surgery either, but apparently there is no other way to stop the reflux conscious feeds have not even helped!

Currently Jacob is asleep, Tricia has the kids, and we are looking at a possible 2-3 day hospital stay. Maybe we will be lucky and leave tomorrow. Jack and I are going to escape now eat eat dinner. I'll keep everyone posted.

I'm happy to announce...........

I'm sitting here with 5 children 2 which are sick. Jack is being such a good daddy/uncle and is in the kitchen with the 3 big kids teaching them how to make cake. :-) Andrew who crawls all over the house and pulls up on everything officially just sat up from laying for the 1st time! (well, that I have seen at least) I'm such a horrible mom. I also just notice that he has beat Jacob in the tooth department. He now has 4 teeth on top 4 on mom. It's not like the 2 bottom teeth just cut through the gums either they are in far enough that they have been there at least a week or 2. I need to pay more attention to him, but he is such a good boy and feeds himself.

Jacob still has 2 on the bottom 4 on top. I sadly report that he is getting very very sick. I have a gut feeling it may be RSV this time. It is not like his normal sicky. Normally it is sinus like. This time it hit suddenly yesterday afternoon with a fever. Now it is deep in his chest. He sounds very wet. He has a rattling cough and very thick white snot. (I knew you needed a visual) I have not even attempted to feed him liquids by mouth. He has been vomiting almost daily. His pediatrician called today. We talked about his hyperbaric therapy and I explained his new sicky to her. So, he has an appointment 1st thing in the morning at 8am. (Sure I think I can handle one more appointment tomorrow :-/) No vomiting today yet. He is been very quite sitting in his Rifton chair just looking around for about an hour.

THANKS GOD FOR SCHOOL TOMORROW! Each day I think of how awesome it would be to send Ava to school full time. I think $480 a month is still to steep for my pockets to do this, so I will patiently wait until next school year when she will be in VPK. Man the day is easier without hearing the princess announce her demands all day with her nonstop whining.

Well it is time to get the kids cleaned and ready for quite time. My sister should be here to get her offspring around 10pm

Oh and early steps called and said someone was willing to pick Jacob up for speech therapy since Julie is out until Novemeber1st, but have not heard anything else about it.

4 dives down 56 more to go...

Last week absolutely flew by!!! The drive to St. Petersburg has not been so bad averaging 50 minutes or so. Jacob cried 2 time the entire time and slept through 2 times. They started putting a nasal cannula on his face while he is in the chamber. I have still yet to go in with him. My sister has been in 3 times with him and Jack once. I think I am going to get Jack to take him tomorrow by himself, so I can get some stuff done around her.

Jacob started getting sick again tonight. Same old, Same old crap. Fever, not eating, and vomiting. He did great yesterday and this afternoon he decided to be sick. I am clueless what to do for him anymore. All I know is this prior to the g-tube and zantac he did NOT vomit every week, ever few days, every day etc... I could have counted on my hands how many times he vomited prior to g-tube. He has been having alot more "spastic"/"reflux"/pain moments. His feeding has been worse in the past month than it has been EVER. I am lucky to get him to eat 4 or 5 oz at a time in less than an hour. He has not tolerated baby food in days. Ugh! I almost give up, but I can't!!! I have not noticed a difference with the glasses or the hyperbaric yet. I will be patient and optomistic still :-) I have to or I will go crazy!

This weekend (esp. Saturday) was HELL. There is no other words to describe "Cerner go live" for the weekend crew. What I mean by this, is that the ER  I work in has offically switched from paper charting to computer charting. The attempted to go Live with the system on this pasted Wednesday and it failed after a few hours. They spent Thursday trying to fix it and I guess offically went live on Friday. So has you can imagine by the time I got to work Saturday morning . The system had not been up in running for even 24 hours at this point was HELL. An angry bitchy side of me came out that I did not know I had. I can't even explain how many times I wanted to throw the damn computer on the ground and step on it. I picked up most of the program easily after a few hours, but every single time I went to chart or do ANYTHING on the laptop chart thing it would freeze up, this made for a VERY long day and the patients sufferend due to delay in car because I had to fight with the computer to know what the orders were. The day was getting better by 4pm. I left early at 530 to go to Jack's 10 year high school reunion. (side not: I was okay, but not worth the $90 it cost to go) Anyways, today was much better. The computer (atleast the one I had) did not freeze up nonstop and I had a routine down to get myself back in the swing of things. I hate that the program has like 15 different ways to do things and then 1 person tells you to do it one way and someone else comes behind them and tells you they were wrong. I wish they would hurry up and come up with a policy for the low paid nurses (LPN) vs. the real nurse (RN) who can do what thing. One minutes I am told it is okay to do this action and then 2 minutes later it is one of the 7 deadly sins.I know I hardly make since, but it is 1222 am right now and the past week of my life has taken alot out of me, so I suppose I should go make sure Jacob A. has not vomited B. As not aspirated his vomit, C. is not still running a fever and D. is still asleep Oh and I have to turn him like I do every 3 or 4 hours. It would suck not be able to turn myself :-(

PS I love taking Ava to school!!!!!

Jacob's big day HBOT and glasses

Today was the big day. Jacob did his 1st of 60 dives in the Hyperbaric oxygen chamber. Then, we drove from St. Petersburg to Winter Haven and picked up Jacob's 1st pair of glasses. My sister came along with me today. It was great and it passed the time quickly. It has been quite the long day. We were running late leaving so I let my sister drive. Everyone should yell at her. She made an 1hr and 15 minute drive turn into an almost 45 minute drive :-) Lakeland to St. Pete in 45 minutes is just not good LOL Anyways, I was feeling kinda self concious about getting in the chamber with Jacob, I decided I was to fat. So Tricia went instead. She has informed me that I should fit just fine. :-)

Ava had a good day at school apparently they had their 1st ballet lesson today. She never really tells me what she does at school when I ask. Instead, she drills me and asks me what I learned today. She 1st told me she went "PEE PEE IN THE POTTYYYYYY!" Then she said she learned how to move her body in ballet when I asked her if she danced. The she told me she learned how to color orange and finally I asked her what she sang today. She ignores me and about 5 minutes later she bust out "GOD IS A GREAT BIG GOD" over and over again but when she was saying it, it sounded more like "God is a great big guy." She is to cute. When I ask he where God is she tells me he is always at teh doctors with Logan. :'-( tear and when I ask her where the doctor is she says "HEAVEN!"

Andrew tagged along with us today. He was a very good boy for the most part and kept his whining to a minimum. He is playing in his baby cage now. He loves pulling himself up on stuf all the time. He pulls himself to his knees mostly and sits on his feet. He still can not sit up on his own from laying without pulling himself up on something.

The HBOT Chamber. Trica and Jacob had just gotten in it and it was not enflated yet

Trica and Jacob after they got it up to pressure. Tricia said her ears kept popping and Jacob was screaming and she could not get him to suck on the pacifier.

Keeping Jacob happy :-)

Jacob's new glasses. He hates them.