Wednesday, March 30, 2011

Letters to God

So, I watched the movie "Letters to God" back when it 1st came out in the movie theater. It is definitely a tear jerkier. I think it might have been just after Logan died, but I am not sure exactly when I seen it. The 1st time I watched it, it was more just because it talked about Arnold Palmer Hospital and had shots of Winnie Palmer Hospital in it. It was touching, but kinda went on the back burner from there. I watched it on Netflix with Jack tonight...I think he has been traumatised. For him it brought up some really raw emotions.

Now that I have had a little more than a year to grieve and attempt to heal from my own heart breaking life circumstance. I kinda feel like I am a bystander of everyone else I know going through their own storm. I find myself still grieving for Jacob. I have had myself in some kind of nasty funk lately. Not caring about my finances and spending habits, not cleaning the house, not taking as good of care of myself as I should, having a pretty crappy attitude and mouth lately, short tempered, lazy, negative...I can go on and on. I am watching myself self distrust in the mirror every day. I'm up 20lbs! I gained that FAST! Just a while ago I was down 10lbs. *Sigh* My mind and body are screaming "WHAT ARE YOU DOING", but my will-power/desire for instant gratification continues to sit on my butt all day and eat lots of take out and fast food.

It has really been on my heart lately that it is time for a change. It is time to let go of these feelings of self pity, and jealousy of everyone else's healthy children. Where I used to touchier myself reading blogs that other mom's have started about their own triplet actually hurt to see the "positive outcomes." Now I find myself praying (which I have not enjoyed doing lately) for these woman I don't even know. I am praying they all make it to at least 35 weeks. 1 lady is only 3 weeks away! Which just reminded me. There is a lady that lives locally that only recently found out she is having triplets should have delivered today. I must text her to see how everything is tomorrow. :-)

Back to my point of writing this blog...remember how I posted a few post ago about faith...
"if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you." Matthew 17:20

This very verse is mentioned in the movie "Letters to God." At that moment when I heard them mention about the mustard seed and the mom went off about her lack of faith at that moment...I realized I know what she is talking about. I am there. I am sitting in a pit of self pity and I see how it is effecting my children, now even as they don't really have any clue what is going on in my head. They hear my screaming, not so nice choice words, my lack of wanting to play and enjoy my kids. I got off my fat butt today and the day before and actually sat on the floor and worked with Jacob. I know that if I spent more time doing this he would probably be doing more, but I literally have not been able to mentally at least. I have felt like I just can't do it. It hurts just to get up. So, I forced myself to do it and I actually enjoyed seeing him pull himself up off the floor. Hearing him laugh and watching him trying to turn over himself. I have put Jacob and myself on a schedule. He has exact times he eats now and I have a wake up time in the morning (now I need to work on that whole bed time thing). After 28 days it is a habit right? LOL

WAKE UP! 7:10am...or 7:20 after a snooze LOL Jacob gets his meds at 7:30 and he eats at 8am...the next feed is 1pm, then 5, and then 10pm He has tolerated this very well.

I have been thinking a lot about cancer lately. I am trying to currently overcome my nightmares about my children getting cancer. I am totally crazy. Sometimes this blog reading is not such a good idea for someone with some self diagnosed post traumatic stress syndrome. At the same time I think it is good for me. I realize that I am defiantly not the only one who's life has been turned upside down by tragedy, illness, or disability. I'm not even the only one in my circle of friend that has experienced a great loss. I am still the only one who has a disabled child. I'm sure God will place the right friend/person in my life one day that I can relate with. Maybe I will be ambitious and start a local support group for special needs kids one day. That is something really on my heart lately, I just don't know how to go about it.

So my friend's cancer is what has really rocked my world lately. I feel like I am sitting back in the world of uncertainty like I was in with Logan and still kinda in with Jacob. I am really trying to pray for healing, but I understand if it does not happen. I feel like if something bad happens I will feel...with no other words to put it as...let down. *Sigh* Working on this....anyways she tells me she is having a few good days lately. She has had a few pain free days, but her nights have not been so pleasant. She is on her 2nd day of chemo. She is still having some issues at home, but says things are getting better. I took her some cloths today and some lotions, and sprays donated by a friend. She was very grateful. I will be giving her some money donated to her on Thursday. Kinda sucks I have to wait for it to hit my account then pull out the cash and give it to her. I think I need to look and see if I can add her checking account so I can put any donations directly in her account since it takes 3-5 days for them to transfer the money.

So to conclude my blog. Anyone that has not seen "Letter's to God" should see it. It shows sad outcomes, but also show answered prayers and many cancer survivors who were told would not make it. Show how people like Logan, and all the other people God hand picked in this world, that may or may not live until their 90 are hear to spread God's word and show that he is a loving and forgiving God. That he DOES heal even if it is not in the ways we want him to. That he is where are hearts should be for our own salvation, peace and comfort.

Thursday, March 24, 2011

The boys' 1st Disney Trip

Jack and I took the boys to Disney for the 1st time yesterday. We went to Epcot. They were okay for the 1st few hours. They cried for HOURS after that. Jack wanted to stay till the park closed to see the show...we attempted this, but it was so crowded that it was hard to see anything. I just wanted to leave and I knew we were going to be stuck at the monorail line FOREVER if we did not get to the exit before it was over. So we left and still ended up waiting a good 30 minutes before we got on the monorail to get back to the car.

The boys did get to go on a few things with us, not sure what it is called, but the ride through the past and future in the big Epcot ball was their 1st ride. That was the 1st time I have been on that too. Then they sat through Captain EO with Michael Jackson in it. Andrew was very bad and stole the 3D glasses. At this point he was screaming at us if we attempted to take anything away from him. We did finally get them away and back to where they belonged. Jack and Ava went on the Figment ride and Ava and I went on the Finding Nemo ride. We ate at the cafe that had Kim Possible stuff in it. Outside of the crying it was a good day.
This 1st Disney trip with all 3 made us think that we needed a stroller to take to places like that, that all 3 can ride in. So a fellow triplet mom had a Joovy Big Caboose for sale. We met her husband today and bought it from her. We tested it out around the block tonight. It is definitely no Baby Jogger City Mini like I have, but it will do the job. It hardly fits in my van. We did not think we were going to be able to get it, but I finally found a way to wedge the thing between the slide door and the seats. It is kinda hard to steer, but I have yet to find a triple tandem stroller that isn't. We had a Peg Pergo double at one point that was just as hard to steer. LOL this will make my 8th stroller I have owned in the last 4 years and the 5th since having the babies.

The stroller reviews:
1. Ava has had an Evenflo stroller that went with her 1st infant carrier..hated it.

2. Then we got the Britax stroller that she used until the babies were born....thought I loved it.

3. Then the 1st stroller we got for the boys was the Peg Pergo double...hated all the pieces.

4. We had another triplet mom give us a quad stroller. It was okay for holding 4 kids. Very heavy and hardly fit in the van.

5. Bought the Triplet Baby Trend stroller when we thought Logan was coming home....never really used it and when Logan died I could not stand looking at it, so I donated it. Plus the seats had issues couldn't make them come out of the reclining position, but apparently someone at the place I donated it to knew how to fix it.

6. Bought a cheap single stroller from Toys R Us when Jacob was going to sucked

7. Bought the Baby Jogger City Mini double stroller the beginning of last year. It was my income tax splurge. THE BEST MONEY I HAVE EVERY SPENT ON A STROLLER! I love that thing. It folds so easy. Turns corners at the drop of a dime. Easy to push. Not that heavy. Only gripes are the seats don't sit up as much as I would like, and the fact that you have to spend a fortune to buy all the extras for them...which I have not done. I bought the cup holder thing, which I love.

8. The Joovy Big Caboose Triple Tandem stroller. Has 2 full size seats with cup holders and a sit or stand 3rd seat for a bigger kid. It is horrible to turn and hurts your arms to push. Definitely does not push as easy or as smoothly as the Baby Jogger. Maybe it is because it is used...oh well it will do the job for parks, walks around the neighbor hood, and theme parks...definitely not daily use.

I have had 10 or 11 strollers if I include the cheap umbrella strollers can't remember if I had 2 or 3...these were the last minute buys when you realized you left home without a stroller and really needed one LOL

On to the next subject....continuing to knock on wood....Jacob is on day 3 with no vomiting. I started him on over the counter allergy medication 2 days ago now...I think. Seems like he is less congested and has not coughed as much. Once again though he is still being weaned off a steroid and just finished a 10 day course of antibiotics, so who know what is actually helping. He also has started the Erythromycin today in a low dose. I have to give it 30 minutes before he eats 4 times a day to see if the "side effects" of the medication will help with the gastric emptying of his stomach since he cannot take Reglan or any of the other medications that are usually used for gastroparesis. Hoping and trying to have a little faith that maybe this last ditch effort of medications will save my baby from needing any major surgeries.

We are still trying E-STEM with speech therapy trying to stimulate Jacob's muscle in his throat so that we may get him to swallow he could possibly eat some solid foods again. Trying not to loose hope.

Last, but not least...I am going to update on my friend Christine since she apparently does not have time to update her blog with all her "resting" :-P I seen her a few days can definately tell she has been on steroids a while...she has the "moon face." I'm such a mean friend I still had to make fun of her about it. Her cheeks stick out farther than her mouth. Better have a big fat face and be alive though. :-D Love you Chris!! She told me she feels like the pressure in her head is worse. She has had to take more pain pills now than she did last month. The left side of her face has been numb for awhile, since before the brain biopsy. Now the numbness is spreading across her mouth.  She is said she has a lot o nausea. She is dizzy all the time and has a hard time standing without holding something. She said she feels weak and the pressure and pain stop her from doing the things she wants to do.

She still has no income and they are still waiting on SSI. She said June maybe? If anyone else knows how to do this SSI I think to make it faster let me know...I thought there were ways to get emergency help??? They have been short on $ for everything they need for themselves and their children. They have been living and getting by with only the money and supplies given from online donations, friends, and family. THANK YOU TO THE PEOPLE WHO HAVE DONATED THROUGH PAYPAL! SHE GETS EVERY PENNY AS SOON AS I CAN GET IT TO HER!!! Her dad tried to set up transport via medicaid to take her to Tampa, but a 10 minute appointment left her stuck waiting and traveling for 12 hours. I say we leave that transportaion until she don't have another choice. Her dad set it up trying to save money. If I have to drag all 3 of my kids with me I WILL take her to every appointment I possibly can!

There have been some issues going on at home, but I will leave that part of her business to her. Just pray for her please! She said she enjoyed helping cut things up for dinner (daddy wouldn't let her play with knives for awhile). Her and her husband got to enjoying making dinner for the 1st time in a while. The kids need things to do outside. They spend most of the day outside due to her dad's wife working from home. Looking for anyone local that may have something they don't use anymore that can be played with outside. Also they can use, cloths, gas cards, gifts cards, toilet paper, hand soap, cleaning supplies, laundry soap, heck any kinda soap...shampoo etc, toothpaste, dental is the simple things you use everyday that you don't think about. It sucks though when you don't have it or anyway to buy it for yourself.

I have been taking care of her cell phone bill and I paid her car insurance for a month so her licenses would not get suspended. I think they are 3 months behind on their car payment now. :-(  It is the only form of independent transportation they have, except for no gas. :-( She has boostmobile so even those kinda gift cards will help. I know a cell phone does not sound like a NEED, but it is the only thing she has that is personal and it is HERS! It is her connection to the outside world. To friends, family, doctors, SSI business, etc. She sent off for I guess a free goverment phone that gets like 200 minutes a month or something, but hell sitting on hold you can use that up in a few days Grr! Hopefully she will start getting some kind of funds in so they will be doing better, but until then I am asking all my friends for ANYTHING you can do to help. I'm going broke over here! Disclaimer...she may hurt me for telling her business, but that's okay :-)

P.S. one day I still hope to get her to Disney, I guess she found a thing that can give her a free disney vacation or something she has to send in an essay. I think she is working on that, but I still have some strings pulled to get her in as soon as she feels up to it :-)

Andrew was holding Jacob's hand saying "Tickle, tickle, tickle" and Jacob was laughing.

Andrew's 1st chicken wing today

Ava playing at the park on Tuesday

The boys in the van today on our way to The End Zone for dinner with friends.

Disney on Wednesday. Andrew holding the stolen 3D glasses. They were very cranky at this moment!

The boys at the park on Tuesday

Swinging together <3

Jacob loved this swing!

A stock photo of the new stroller

shoving the stroller in the only spot in the van I could fit it.

Tuesday, March 22, 2011

Looking up

Things have been a little better since my last post. I had a REALLY GOOD Saturday. I must say it was one of the best days I have had emotionally in a long time. Nothing spectacular happened, just different. It was the 1st day I had off on a Saturday that was not accompanied by a hospital visit. Jack and I were up bright and early and prepared for a yard sale. I must say it was quite successful. We got rid of about 90% of the stuff that cluttered our garage!

We also taught Ava about getting rid of things she no longer needed. She sold 2 tricycles, a ride on push toy thing, and a few other small toys. She made $28.50. She is excited to go to the store to get new "girl toys" now.

Jacob had one of those really good mornings. He stood in his walker for a long time with good head control. The physical therapist had a pretty good session with him. I also sent in all the measurements and pictures to start the processes of having Jacob's Charley Wrap made. ( I am very excited to see if this helps him!

Andrew STOOD by himself for a good 10 seconds today. LOL then he fell down because I was freaking out that he was standing unassisted! He is "walking" on his knees. He has decided that standing and walking is better than crawling. So he kinda hopes and scoots along on his knees. I'm hoping this is a sign he will actually stand up and walk soon!

Asking for prayer for my friend Christine. She reports that the numbness on her face is spreading and the pressure in her head is getting worse. She is also having some other domestic issues that could use some resolutions. She starts her 2nd month of Chemo next week.

Friday, March 18, 2011


"if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you." Matthew 17:20

I was reading another mom's blog tonight and this is the passage she had. Faith is all I have anymore...because I really don't know how much more of Jacob's sickness me or him can take at this point. There never seems to be an end in sight and no one wants to help him! I want to have a panic attact just thinking about it as I had to jump from my chair midtyping a few seconds ago to make sure he was not aspirating his vomit as he was gagging in his sleep! I really just want to punch the GI doctor in her face for making him have to go through this for so long. I guess it is my own fault to for not letting them do a j-tube.  I just really don't want that for him or me to be honest.

Depression has sure been hitting home today. I never thought I would be such a nut case. I literally cried for like an hour today because I could not get anyone to accompany me to Backyard Aventure with Ava today. I asked like 10 people I think before I gave up. Though locgically I don't expect people to drop what they are doing and change their plans to hang out with me last crazy out of control hormones and crazy mood swings was horribly affends and my feelings were hurt. It embarrasses me to even write that, but I figured if I don't let my feeling out, I will be the next phych patient. It even hurts my feels when some of my so called "good friends" and my MOTHER won't read my blog because "it is depressing." Sorry my feeling are to "depressing" for you to read about! Heck, pretty much anything hurts my feelings these days.

I read so many other people's blogs who are going through worse things than I am at the little kids with cancer. Then I think to myself why am I just swimming in my own pity party over here in Jennifer land. I really can't help it anymore. I'm done. I'm Done. I'M DONE! 2 years of neverending stress has gotten to me. I am beyond my breaking point. I AM BROKEN. I used to look at the good and positive in everything. I used to be optomistc. I used to be greatful. I used to believe in the power of prayer. I guess the enemy has really gotten to me this time. All I can think of is What's the point? I was discussing this with a friend today who has had a loss. She told me she finds herself questioning her faith. I told her. I don't question my faith. Without faith and hope there is nothing. Without faith in knowing there is a loving God waiting for us when we are done on this earth..why go on? Why do good and love one another? What would it matter? So I still have faith. I have an undying love for our Lord. I have faith that I will see him one day, and that I will see my son again one day. I do believe in everyone having a purpose. I know I am needed here for my children. Where I have lost my faith is in prayer. I know this sounds horrible, but my heart is so heavy right now. I think of how I prayed so hard for Logan and he never got better. I had the world praying for Logan...well atleast the facebook and blog world. I once asked a friend if God has already predetermined what your purpose on earth is and God's will to be done, that what does prayer do? I can't really put into words what she told me, but she explained why we pray. I think I may need that explantion again. Because I find myself having a hard time praying for healing for anyone anymore. I can ask for forgiveness all day and night, but healing I just can't anymore. God did not heal Logan. His will was done and Logan left. Not that I think Jacob is dying, but I prayed and I prayed for something ANYTHING to help him and hear I am standing in the middle of the storm, correction: laying feeling defeated on my face in this storm as negativety, sickness, and hopelessness now swarms around me. My heart knows I need to stand stong, pray, and trust in God. I could really just use a ray of light at this point. I need happiness again. Though I see his blessings all around me and I am greatful. I just want to see my children healthy. PLEASE PRAY FOR ME!

On a more posative note...I guess...I took both boys to the doctor this morning for their now 2 weeks of sickness and Jacob's follow up from his ER visit. Andrew has a double ear infection. Jacob's ears look fine now, but his lungs still sound like crap. He is now back on steroids...I hope they help. Andrew is on his 1st antibiotic since 2009. It would be great if Jacob had that track record :-/

Ava was well behaved at school all week, so I kept my promise and took her to her favorite place Backyard Adventure. So after my pity party about having to sit up their by myself...I ended up helping out a friend and picked up Ava's friend Savanna and took them both to Backyard Adventure. Then Jack's dad ended up meeting me up their with a box of diapers and a small blessing that is now allowing my to get Jacob's Charley Wrap! Thank You so much Linda and Jerry. You are the best in-laws a girl could ask for and the best grandparents any kid could have either. Thank You for loving my family so much. You have always been there for us!.Love you!

Wednesday, March 16, 2011

To the doctor we go in the AM

This has NOT been the most pleasant of weeks. Jacob is still really sick. I have seen no improvement since Sunday. He goes up and down on his restorations. His lungs sound like crap all the time. He is literally foaming at the mouth. He is horribly congested and is sneezing out lots of nasty snot! He has kept a fever on and off and he has a barking horrible non-productive cough. It hurts to see him like this. I am so very very very very very very tired of the nonstop illness of the babies in my house! I must say on a positive note, even though he is still vomiting he has not been vomiting as much as he normally does, and when he does it is not entire feeds. He still has the occasional lets vomit across the room out of our nose and mouth moments, but they are not every day now. He has gagged a lot today like he wanted to vomit and swallowed it back and he did manage to get a small amount out today, but over all it has been a good vomit day and a very bad cough day. He has coughed so much my lungs hurt!

Andrew is also sick, but it is just the runny nose kinda sick. He actually has green nasty snot. Jacob's is white just in case you really wanted to know. He has a cough to, but nothing like Jacobs. Taking them both to the doctor to have Jacob's follow up from the ER (actually really hoping they don't try to admit him. He has required breathing treatments every 2-4 hours today) I think he just needs another round of steroids. I want to make sure Andrew doesn't have an ear infection too. Andrew got his 1st hair cut yesterday. We shaved his head bald with the hopes his hair will grow in better. He totally hated it. I still need to get around to posting pictures of everything!

Neither baby is doing anything new. Jacob still really enjoys his new annoy noise toy. It only half works because he decided to vomit in it on Monday. Andrew is making no attempt to stand or walk this week. He won't even walk with his little gold special needs walker. :-( Jacob has just been to miserable to even work with. Not even sure if we will make it to his conductive education therapy in Orlando on Friday.

We have been down 1 computer for well over 2 months now. It still works, but if you move it at all it turns off. Andrew knocked on the floor and it stopped functioning correctly. :-( So, I have been searching all over for a cheaper computer. The one that broke was actually quite expensive. :-( Though I do not need i5 processor and massive amounts of memory, ram doesn't mean I don't want it. I'm not even a gamer! Anyways I went from having a 17.3 inch screen to testing out a netbook. LMBO What a joke! I bought a little HP Mini today because they were cheap and I am tired of sharing Jack's computer. He has little hissy fit when I am on his computer. Needless to say tiny 10.1 inch screens and mini keyboards are just not for me. The entire operating system ran like dial up and when you were on the Internet and tried to type something it would take forever for it to appear. It would be a great kid computer and definitely an okay travel computer since that is what is meant for, but definitely not a Jennifer is sitting on her butt shopping online and blogging computer.  So back to Target it will go tomorrow and I will continue to be a good girl and share a laptop with Jack.

I'm a little worried about the new plants! We finished the landscaping on Monday. We have been good plant owners and we have watered them everyday, but so far the bouganvilla has lost 98% of its flowers and some leaves. It starting to look really sick, and the garlic grass is turning brown on parts of it. Everything else seems to be holding strong. I hope out bouganvilla bounces back that is one expensive ass plant to die!

So everyone on FB has already had the pleasure of reading Ava's comment of the day, but here it goes again. I have not put away laundry in a VERY long time. Ava went in my room to find her "pile of cloths" comes out in her underwear screaming "Where are all the girl cloths and the sister cloths?" I told her they were in her drawers..she looks at me wit ha look of disgust, says "ugh!" and stomps aways like I did something horrible by actually putting her cloths away. I must mention after she was easily able to find new cloths to wear she told me "Thank you mama for putting my undies and dresses away." BTW in Ava language everything you wear is a dress.

Ava continues asking questions with 2 options. For example she has a maraca tonight and she asks me what was inside of it that makes noise. I tell her they are beans. She then asks several minutes later....she was thinking about it pretty hard. "Are they magic beans or regular beans." I tell her regular beans then she looks disappointed. "Oh." I wonder what goes though this kid's head sometimes. She does this all day long. "Where are we going after school" Me: "I dunno" Ava: "Are we going to backyard adventure or the park" When we visit Logan's grave she asks me "Are we going to visit the Hospital Logan or the Flower Logan" This is how she associates when he was alive she remembers him in the hospital...and every time we pass WPH she still asks to go see him. She knows he is in Heaven, but she does not understand where Heaven is...because she also still refers to the cemetery as God. The flower Logan is his headstone..because when we go we change his flowers and she picks up all the other flowers that have fallen out of their holders and puts them back.

and the final Ava comment of the day...this melts my heart. We were on our way to Sonny's for my sister's birthday lunch. She blurts out of know where "Dear God, God is great. God is good. Thank you for my food. Thank you for purses. Amen You can eat now." We were not even at the restaurant yet...I guess she was getting prayers for food and purses out of the way so she could get down to business once she got her food. LOL

Monday, March 14, 2011


Picked my kids up  from my sisters house last night. It was her "Ava" weekend LOL as it was called before the boys came along, Jacob seemed fine when I brought him inside. I sat him up in his feeder chair and our family ate dinner and watched TV or about an hour. At bedtime I went to give him his night time meds and I noticed he felt pretty warm and he was breathing really fast. I gave him his meds and then gave him a 2nd breathing treatment. His breathing did not slow and after Tylenol he was still running a temperature of 101.2 30 minutes after all meds were given. So, I called the on call pediatrician. He advised I have him seen if he was breathing faster than 45 breaths per minute...well he was at like 60! AFTER ALL THE BREATHING TREATMENTS! So I took him to the ER she told me he had a nasty ear infection in his left ear. At this point he dad slowed his breathing between 40-50. I figured he was having an asthma attack....they did a chest x-ray and to my surprise he was diagnosed with his has been a while. The x-ray showed the normal damage that he has had for over a year in his right upper lobe, but this time he had infiltrates in his right lower lobe as well. So, not really sure if it is aspiration or not, but more than likely it is. He made it 3 days without vomiting, vomited 2x on Sunday before I got him.

Which leads me to the other other doctors...not sure if I have blogged about it before, but is so I am writing it again anyway. We seen the ENT doctor last Wednesday. We discussed the chronic congestion and enlarged tonsils. Of course he thinks it is a GI issue relating all his issues back reflux....he told me he will take the tonsils and adenoids out if I want him to, but it is just putting a "band aid" on the real issues. He told me to talk with GI again and follow up in 4 weeks. UGH so another month with another doctor that don't really think he can help my son! So, I call GI and get a returned call on Friday. Once again they tell me they recommend a j-tube. This is a tube that goes into the 1st part of the small intestine....he would then have 1 hole in his stomach with 2 tubes coming from it..the g-tube to give medication and the j-tube to feed him. With j-tube feeds he would have to be on  continuous feed 24/7...never a day or hour without him being attached to a pump. WHO THE HELL WOULD WANT THAT FOR THEIR CHILD NO MATTER HOW DISABLED THEY ARE!?! Especially when their are other options. I understand their are other complications and risks associated with the nissen. I understand it can't be reversed etc, but I feel like this is the better option. I feel like it will better protect his lung and he can get a mickey button and not have a long tube hanging from his stomach all the time. So, now we decide A. Do we take out tonsils and adenoids and see if that helps with the congestion and cough? This would be a gamble to see if it will make him vomit less... or B. Do I go ahead and push for the referral to the Pediatric surgeon to have the nissen do and the risk A. major complications B. It not works C. his still being congested and coughing all the time. or maybe C. we will do tonsils 1st and if that does not work then do the nissen. I dunno anymore!

Wednesday, March 9, 2011

Jacob is in a good mood

So, I don't "dislike"Jack today. We have had a pretty good day with minimal fighting. He let me buy all the landscaping for the front of our house today (this is where the minimal fighting came in) The nursery just delivered all the plants. I am so excited it is going to look so much better when we have them all planted tomorrow! I am excited to get started. I hope we can keep them alive since they cost a small fortune to buy!

Jacob has been doing a little better. He is in a very good mood and no vomiting...yet :-/ today. The vision therapist brought out a toy that make loud annoy noises and he absolutely loves it. It is sensitive enough that anytime he touches it, it makes a noise. He laughs and smiles every time it goes off. He is able to sit in his chair and make it go off by himself. When I laid him down in his bed earlier I put it near his hands so he could play with it. I think it is his new favorite toy. He has been "talking" a lot. He been making lots of baby talk and has hardly cried at all. Maybe tomorrow I will have some pictures of the new landscaping and a video of Jacob playing with his toy and talking :-)

Andrew still refuses to walk. Ava still refuses to learn to count of do her ABC's :-( In due time...

Jacob says nayh nayh nayh I guess that is night night is Jacob language.

Tuesday, March 8, 2011

Why I dislike my husband tonight!

I am so freaking pissed right now I want to explode...which might be good then I wouldn't be so F-N fat anymore right?

Anyway, was it not my son sitting in the hospital all weekend too? Did I not work all day Saturday, go home and get him clean cloths and dinner then spend the night in the hospital too and then go back to work again the next day for 1/2 a shift so I could keep my job so my kids would continue to have health insurance? Did I not leave work to get his kids and help arrange a baby sitter so he could work on Monday? (a bigh thank you to The Croft family for helping us out) Did I not sit in the hospital with him on Monday while he went to work? Did I not take care of his kids on Monday and clean vomit and listen to them scream and give breathing treatment after breathing treatment? Sorry I was exhausted and did not go above and beyond the call of duty and be a good "house wife" and clean the fucking house while I was at it! Today did I not drive all over the damn place getting up super early to getget his kids dressed so I could take his daughter to school? Then did I not go and get most of the shit done to register her for VPK next year? Not to mention did I not drive all the freaking way to Winter Haven to go get his sons glasses from the eye doctor? I guess I also did not try to go get the mattress replaced for our bed so HE could sleep better at night too? Then when I came home I guess I did  not change shitty diaper after shitty diaper..not to mention feeding his handicap son every 3 hours in an attempt not to get him to vomit for once while taking care of his other whining son who screams at the top of his lungs all day. I guess I did not spend over an hour clipping coupons trying to save our family a little money on groceries either. Then to get back up change more diapers...feed kids load them back in the car and go pick his daughter up from school while his sons screamed in the back seat the entire time. BTW I guess I also did not try to get some laundry washed either...Sorry I did not rush home "Dear" to be a good wife and make you dinner and make sure the house was spotless too. You better bet it was not worse than it was when you left for work this morning. Then for him to tell me he is "not happy with me" because the house was not clean. FUCK YOU! I guess when I was at the mall trying to find his son a pair of shoes I did not think of him when I attempted to buy him new cloths..not my fault his fat ass can't fit the biggest size the store carries in pants! I also didn't think of him when I made sure I brought him home something to eat to. Then all I get is grief how I apparently did "NOTHING" today because his mighty kingdom was not clean. Oh and he is pissed because he does not like the cloths I buy they are apparently "trailer park" cloths...sorry I don't like the cloths you pick out for me "dear" I don't think anyone else wants to see my fat rolls either! Then after his son barfs up his last feed...he did clean him after bitching that he "always has to clean him", but then decided to go lay on his fat ass and leave the rest of the shit for me to clean up. I guess I will also have to be the one who stays up until midnight to make sure our son has more than 15oz of food in his body today. Apparently since I do "nothing" all week I NEVER DESERVE A BREAK. Because I certainly don't take care of his children Monday though Friday even when he is home and then deal with assholes at work all weekend. When will I ever get a day of FREEDOM? Where I don't get have to worry about getting up and make sure the house is clean enough so I am not embarrassed for the therapist to come inside, getting medications ready, the endless tube feeds through the day, the constant worry about when Jacob is going to chock on his vomit, the none stop screaming from Andrew, kids climbing on me all day. I am tired. I am mentally drained. I am depressed. I am tired of being fat and don't even have the energy to give a shit to do something about it. I don't even want to wake up some mornings but  I drag my ass out of bed every fucking morning and do the same shit over and over again. Oh yeah, when was the last time he packed the kids medications, cloths etc for when they have to go to my sister's house every other weekend. I also do 90% of the dropping off and picking up too.

Not to say he does nothing, because he does help but damn apparently I don't do SHIT!

I know he has his own issues, but why make my life harder and take it out on me? I am expected to give him all my attention when he is home..God forbid I talk on the phone, get online etc..while he is home it is "Jack time". I am made to feel guilty anytime I want to go out or if I do anything without him because he has no one to hang out with. I can't MAKE people call him. I feel bad, but it does not mean I should have to isolate myself from the world and my friends to make him happy all the time.

I know I am not the best mom, the best wife etc..but how the hell am I suppose to get any better when I all hear is nasty comments and him bitching at me all day about what I am not doing "right"

words of a 3 year old....

We were leaving Logan's grave after picking Ava up from school today. I had tears in my eyes and Ava asked why I was sad. I told her Logan was in Heaven and I missed him and that I wanted him here with me. Ava: "It's okay mama don't cry. You love him right?" Me: "yes" her: "then don't cry. You love God and I love God and God loves Logan in Heaven. And I need you home with me so God loves you, but you can't go visit Logan yet." So now as I sit in my van crying she says "Mommy why are you crying now?"
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Sunday, March 6, 2011

month hospital visit

Well, Jacob woke up Saturday morning with his lungs sounding pretty nasty. He was retracting, nasal flaring, etc...I had Jack giving him breathing treatments before I left for work that morning. He had also been running a low grade fever for 3 days. I made an appointment for him to be seen at his MD's office. This landed him admitted at LRMC. They tested him for the usual stuff...RSV, Step. All negative. His tonsils are huge. He needed oxygen yesterday and this morning, but is doing good off oxygen now. He has vomited quite a bit, but what is new :-/. We seen the GI doc on Thursday....nothing new there they still want to wait on the nissen....they want to know what the ENT doc is going to do about the congestion and enlarged tonsils 1st. So, I sit here another night with Jacob in the hospital and wait for a doctor to make up their mind.
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Wednesday, March 2, 2011

Depression...I really need different happy pills!

So I wrote this post for a different site...I really should keep this post to myself, but it the tradition of using this blog as my "journal" I am going to post my hateful thoughts here too. Don't really want any comments on this post...just how I feel at the moment...I really have an overwhelming urge to do yard work...maybe that is what my depression needs is a sun burn and sweat :-) As you can guess this is not a happy an chipper posting as I had last promised...I think I need another trip to "the happiest place on earth."

I have been pretty depressed for the last 2 months. In serious need of some new "happy meds." Logan's Angelversery has come and gone and Jacob has been in and out of the hospital. I used to be part of these Twin to Twin Transfusion support groups. They are full of new moms with new losses and moms that are still pregnant with babies fighting to live. I torchered my self for weeks reading all their sad stories and looking at pictures of tiny babies born to early to even have a chance to live. Reading all their feelings of raw anger and grief broke my heart and started making me feel sorry for myself. I was very fortunate that at least I did have time with my baby. I had over 6 months with him. Any ways, these moms were in all different stages of grief. I eventually deleted myself from these groups because I don't feel like they were making me feel any better, but destroying me fortress that I have built nice and tall around me started to crumble. Maybe it needs to, but I am not ready for that. I handled 6 1/2 months of NICU visits 1 hr each way, I handled the ups and downs of my son's health in the hospital. I prepared myself for "the worse case scenario." I handled his death. I actually felt like I needed to be in control when that day came. I even took the tube off his trach that connected him to the ventilator. I don't know why I felt that I had to do that, but at the time I did. I handled Jacob's brain damage. I handled the devastating diagnoses and poor prognoses of the type of CP he has. Well, I guess I am not handling that one well. I am dealing with it, but I hate it. I resent it with every ounce of my soul. I HATE THAT MY SON HAS BRAIN DAMAGE! Now, I am not handling that my son has died and he is never coming back. No I am not handling this well anymore.

Jacob's CP makes me very sad and because of this it leads me to day dreaming about all the what ifs and what could have been. It has made me mourn things about Logan that I did not even realize I was missing.

Jacob does nothing. He used to eat by mouth, he used to hold things in his hands, he even used to take steps in a walker, but I believe it was all baby reflexes that have went away. He has been sick almost every month since September of 2009. It is really wearing on me now. He has not ate by mouth in 4 months. He won't suck or swallow. At this point I am not sure he will ever eat by mouth again. He vomits daily sometimes more than 5 times a day. In the last year I can only think of a total of 4 weeks where he was not congested, coughing, or vomiting. They tried to tell me it was because he was aspirating when he ate by mouth, well he still does it and he has not had a drop in his mouth in 4 months. Now I couldn't feed him by mouth it I had too. He used to pull his chest off the ground and he has rolled over what seemed purposeful 15 time since November. He has not rolled since early January. Everything he does stop as soon as he gets REALLY sick. Then it is like he forgets how to do everything and we start at square 1. Lets try and hold our head up today Jacob.

Waking up super early, people coming into my home, every day and hours upon hours of therapy every week and I feel like we have made little to no gain. He is apparently legally blind and very farsighted. We get glasses. I see no improvements. I know he sees light...that is the ONLY thing he will track. The rest of the time he looks around in his own little world and seems like he just stares right through you. He can hear. Most of his days are spent moving from 1 contraption to another that the therapist has brought to "help" and he just listens to the world around him. He laughs when my other 2 children cry...if their is a really loud repetitive noise like an alarm clock he kicks his feet and squirms in delight. He gazes at the TV, drools on himself, and just listens. No hand control, no leg control, no body control at all. He just drools and listens. I probably sound horrible..I hear all the be grateful for what he CAN least he CAN hear, but I can't I really hate it. I love him. I love to see him smile, but I long to see him do more. I can "handle" him never walking, I can "handle" him never living independently.**I had to stop my rant and clean up the 3rd vomit of the day! He is on a continuous feed at 30 cc an hour and STILL vomits** What I am having a hard time handling is him not using his hands, him not see, and him never being able to tell me what he wants, thinks, or needs. I also can't handle cleaning VOMIT or the rest of my life! PS I hate his GI doctor to that won't refer him for a Nissan. This I am working on though.

Back to the main reason for my post after getting way off subject on my CP hate rant. I find myself grieving about things I never considered before. Day dreaming, longing, desperately realizing how I will NEVER see my son alive again. It seems unreal. It is not even the dream of seeing them all playing together, running, and fighting with each other. I am stuck in a loathing deep depression about Jacob's condition that I can't even day dream about him walking, talking etc...I know I need help..any ways as my now 19 month old almost "normal" child is beginning to do things 12 month old kids should be doing. It is finally getting exciting. He is so close to walking! Andrew can walk with just the tiniest support. I could literally hold 1 finger and he will walk with me. He is trying to stand up alone, but don't quite do it yet, he cruises furniture and walls. He pushes toys and walks with a special needs walker. He is saying words and interacting with me and his sister. He does not even pay attention that he has a brother. He uses him more as a "toy" or a chair. He will crawl on him and sit on him like he is a pillow. He hits him, chews on him, and pulls on his G-tube. He pulls his glasses off his face and takes his toys. So as I watch him eating, standing, and walking. I find myself picturing what Logan's little voice would sound like saying ma ma. Would Logan be walking by now, would he have ever made it off the oxygen by now? Wouldn't it be cute to see the boys playing "fetch" that is Andrew's favorite game. He loves to bring me a ball and I throw it and he fetches it. I picture him standing by the window getting into the blinds with Andrew, throwing toys over the baby gate, and throwing fits on the floor. I did not realize that I would miss these things. His face stares back at me in the pictures on the walls. I remember all the hopes and dreams I had for him. The hopes and dreams I had for all of them. I don't even feel like a mom with multiples some times. I guess it similar to a mom that lost 2 of her children. I lost a part of my son when the 2nd worse thing that could ever happen to me happened to my son. The devastating brain damage from oxygen depravation to his tiny body. I still find myself wondering if there is anything I can do about it. It would be nice to actually have money to take care of all his needs. The wheel chair van, the extra therapy and equipment insurance won't pay for, maybe a hyperbaric chamber (this helped him), maybe stem cell treatments who know. All I know is their was no damage when he was a week old, he never had a diagnosed brain bleed, he was the best of the 3 respiratory wise during their NICU stay, and some how 3 days before he goes home he has severe brain damage, but because he is a preemie, I hear there is nothing I can do...even though I feel in my heart that this happened to him from lack of care. Lack of someone responding to him when he was desating. Maybe this is just the thoughts of a desperate mother needing a reason for her son's condition...all I know for sure is that I hate Twin to twin transfusion. My babies would probably all be alive and healthy if we did not have to deliver them due to this evil disease!

Tuesday, March 1, 2011

What a week!

This pasted week has been full of unexpected things.

My friend Karen who has 2 surviving triplets family had a scary situation today. She had a very similar situation to me. TTTS and the death of one of her identical twins 4 days after he was born. Her TTTS survivor Patrick went into respiratory distress and stopped breathing. Praise God that his father Paul knew exactly what to do. He did CPR and called 911. Patrick is stable now and resting comfortably in the PICU. Prayers for a quick recovery!

Saturday the 26th marked the 1 year Angelversery for Summer Mitchell. She was one of my triplets' room mates while at Winnie Palmer. She was 1 of 4. Summer and Hunter are now in Heaven while Skye and Henley stay here with their parents. This is the link to Skye and Henley's blog honoring Summer on her Angelversery. Summer's Angelversery

***I started this blog on Monday is now Tuesday night***
Our Disney trip last Wednesday did not quite go as planned. Christine and her family came over to spend the night so we could get up early and head to Disney. Well, I forgot to set the alarm, so our wake up call was my friend Jill showing up to watch the boys. I frantically scream down the hall for everyone to get up and get dressed! Well, Christine must have caught a stomach bug...she said she was to sick to go. She said she had been up all night vomiting among other to make a long story short, after much deliberation they decided not to go. Her oldest son was complaining his head and eyes were hurting and he was he went home with Christine and her husband Alex and her other son Xander went to school. We took her daughter Bree with us and Jack, Bree, Ava, and me went to Disney World. The girls loved it and we had a great day. Maybe Christine will be up to Disney in the future, but not sure when or if it is even possible. :-( She started Chemo on Monday. I have not had a chance to talk to her yet, so I am not sure how she is handling things. She takes 3 pills a day for 5 days then has 23 days (I think) off. So I don't know if she could make a trip out maybe before she starts the next round or not...not sure if it would be to risky with her getting sick around tourists.

Update on my friend Karen's son Patrick. He is stable and doing well. Haven't seen an update, but last post said he might have been discharged to day or tomorrow.

Well, the boys have been sick since about this time last week. Jacob of course more than Andrew. Jacob made it a record week without vomiting a few weeks ago...then he got a slight cough and the nose congestion came back a little....then he threw up about every 3 days...then every other day...then daily...then Monday every feed...ugh! So now we are back on a continuous feed at 30cc an hour. He is congested and coughing. So now I know that if he is truly not congested and coughing at all he CAN tolerate full feeds over an hour. Heck, I fed him over 30 minutes one day and he tolerated it. It was total bliss! The anxiety over when the next "sickness" was totally ruiningthe bliss though. The constant worry about WHEN he would vomit again totally sucked too. So, I will be calling the GI doctor again tomorrow and continuing my quest for the nissen. It was nice while the sickie was gone, but I should not have to worry if my kid is going go puke every time he coughs!

Nothing new going on with him outside of the sickie being back. I feel like he is not EVER going to achieve another goal. He stopped rolling over. I think his total rolls were 15 all together. He stopped pushing himself up. He DOES continue to hold his head up most of the time. I can't even get to take a step at all. I don't think his glasses do shit for him. He kinda just sits in his chair in his own little world. He laughs when the other kids are crying or if their is any loud repetitive noise. He randomly reaches his arms out in front of him and half opens his hands. He still has no hand, trunk, or leg control. We started conductive education with him 2 Fridays ago. She seems to think she is going to get him to do amazing things...we will see. I am going to ask if I can record her so I can follow what she does at home with him every day. What she is doing makes since. It will strengthen his muscles and show him how to move. It was interesting to watch her.

Andrew is getting closer and closer to walking. Since January he is getting more confident. He likes his little gold walker. I took him outside in it last Thursday and he walked all over in it. He even turned it a few times on his own. If he is near something he can hold on to he will walk along it, furniture, toys, or the wall, then he crawls in between. I am waiting for the day he decides to venture that 1st real step. He does not stand alone yet either. He repeats most words you tell him and has master "fetch" He brings you a ball and then says, "ball, throw, ball throw" you throw it he fetches it and brings it back. He LOVES this game.

I have been trying to work with Ava on ABC's and her 123's and NOTHING. This kid absolutely WILL NOT learn for me when it comes to these 2 things. She can tell you names of most colors, shapes, and animals, but can you tell her to count to 5 Noooooooo!!!!! and I KNOW SHE CAN she just WONT!

Well, it is getting late, hopefully my next blog will hold lots of good news :-)