Monday, November 29, 2010


I'm typing this on my tiny touch screen on my cell phone at St. Joseph's Hospital in Tampa....yes, I am that bored! Took Jacob to the GI doctor to address his vomiting and constipation issues at 11am. Did not get home and in bed until about 4:30am and was up at 8:30...I probably should be sleeping. Anyway, after examining him she tells me she is going to admit him! WTF! I was thinking he is just constipation! They are trying to tell me his vomiting is related to the constipation...even though he has been vomiting for 9 months. Oh well, we are admitted. He has an IV, he is not allowed to have feeds, they are checking his blood, doing an x-ray, and they are going to hold his robinal and give him laxatives. I was told we would be here for at least 2-3 days. He has to be vomit free and pooping normally.
Thank you to my Jill who wrecked her car trying to come get my kids from Tampa and still found a way to get my children for me. Good selfless friends like her are hard to find. I pray God has blessings in abundance for her in the near future. She could surely use a break. I'm going to win the lottery so I can give her her a cut and take Jacob to China :-) God has blessed me with so many wonderful friends Thank You!

Sunday, November 28, 2010

On the Road Again

We have been in Albertviille, AL for almost a week now. We have a 10 hour drive ahead of us tomorrow. Some prayers would be greatly appreciated for a safe trip home. we plan on leaving around 4pm (5pm my normal time) Hopefully we will make it home around 5 am. Jacob has a GI doctor appt I think at 1pm on Monday and Jack has to work 1pm to 1am on Monday. Busy Busy Busy week ahead for us I have lots of appointments to keep up with. BTW Jack's new work schedule is going to be 1p-1a I am excited. I think it will be better for him and us. Now when I take Ava to school, I don't have to pack the babies up YEA!!!

Time has flown by since we got here. We spent a great deal of time driving (Jack's idea) which I was not so fond of. Yesterday we literally spent 7 hours driving because Jack wanted to go to Tennessee. We drove to Lynchburg area, stopped at a gas station and the Tim Ford dam then drove home. WTF wasted day! I did get 2 days of doing nothing and just spending time with my mom and dad which I loved and Jack bitched the entire time. Monday we went to Huntsville and Tuesday Scottsburo. Yesterday was shopping day and today we went back to Huntsville again for more shopping. I bought my mom a cell phone today to! Now, I just have to get her to use it....overall we have had a really good time. The driving past was not so bad, but thinking about the 10 hour drive here and the drive home just sucks when you spend most of your vacation days driving all day as well. I felt bad for the babies. They spent more time strapped into car seats and high chairs than they have moving.

Ava has been very whiny and I think she is ready to go home. She has enjoyed playing with her cousin and my mom cats lol

It is almost 2am now so I am going to post some pictures and go to bed. God Bless!

sleeping babies and daddy

Ava and James at Wal-Mart lol

Jacob and Andrew eatting (well Andrew is)

Jack and his babies

At KFC Ava and Jack

I think Ava likes statues of old men....she is feeling his leg up lol

My dad and Jacob

Wednesday, November 17, 2010

My Mirena IUD is STUCK

Dang it! I went for my yearly visit today to the GYN. I asked if they could remove the IUD, because I was tired of the not so pleasant side effects and wanted a different form of birth control. I assume the position after sitting half naked in the exam from 45 minutes for him to come in. He has the forceps things and pull the string...the forceps loose their grip. He tugged several time on the string trying to get it out and he could not keep a grip on it. He then left me in the room in "the position" for another 20 minutes or so, I was bored so I gave everyone on facebook a play by play LMAO. He comes back in with the jaws of life tools to get it out. He pulled and pulled again and tried prying the damn thing out. It did not budge .Apparently it really likes me. It hurt like hell and I felt like he was trying to give me a hysterectomy right then and there. After pulling with no avail he gets up and tells me to get dressed and meet him in his office.

I meet him in his office and he tells me I need an ultrasound to see where the IUD is. He said there are several things that could be happening. 1. My cervix just won't let it out. 2. It is embedded in my uterine lining 3. It is embedded in my uterus from the scar tissue from my c-section. If numbers 2 or 3 are the case it could possibly have caused permanent damage to my uterus affecting my ability to become pregnant again.

This information has me freaking out!. I WANT to have another baby at some point and if my decision to have the IUD placed in the 1st place leads to my infertility I will have a very hard time dealing with this.

I know most of my friends and family have their own options about Jack and me having another baby, but this is our life and we both really really want another child. Not saying now is the right time, and I do not plan on getting pregnant right now. What happens will happen though. After the IUD is removed we planned on trying a different form of birth control that would allow me to have regular cycles again.

Anyways, I am freaking out, my female parts hurt quite badly right now, and I have to wait almost 2 weeks for the stupid ultrasound! I have an appointment for an ultrasound on the 30th.

I noticed that this post pops up a lot during google searches on this subject. Welcome to my blog LOL Just an update for all the women franticly researching this issue as I did. I believe it was the end of January I did have to go to the hospital, be put to sleep and have it removed. The entire thing with my insurance cost me about $800-$1000 (still haven't paid all the bills)to have it taken out. I had to pay my doctor's office nearly $500 before they would even schedule the appointemnt. Thankfully I work at the hospital my procedure was done at so, I was spared that expense. Since the procedure I have also received bills from the doctor who put me to sleep and pathology. My IUD was NOT imbedded once he went in. He said he diolated my cervix and it fell right out. WTF! I know right....that could have been done in the doctors office. Anyways while he was there he did a D/C and sent the tissue to pathology apprently. I was a little sore the 1st day or 2, but nothing horrible. 3 or 4 days out everything was fine. The very next month the horrible cramping periods I had pre-IUD were back. Boo!

Update number 2: 4/11/12 Anyone worried about getting pregnant after IUD removal. I am currently 35 weeks pregnant due for a c-section (more than likely) on May 8th! Yay! I got pregnant about 7 months after I had the IUD removed with no issue. Good Luck to anyone reading this :-)

Update number 3: 7/18/12 I'm scared to make things perminent, and not a fan of shots, pills, or things implanted in my arm so, I took the plundge and had another IUD place about a month ago. I go tomorrow to have the strings trimmed shorter. Fingers crossed when I have it replaced in 5 years I have no issue. I've had random spotting nearly every day or 2 very little though since it was placed no real period though. No cramping or any othe issues.

Tuesday, November 16, 2010

Swallow study results

I was up bright and early at 530 this morning. I took Ava to my sister's house so she could drop her off at school. Then, the boys and me were off to fight rush hour morning traffic to to All Children's Hospital in St. Petersburg...a 45 minute drive took us nearly 1 1/2 hours this morning :-/.  I was 30 minutes late, but they were very good and worked me in. Well they tried thin liquids and thick liquids, they tried y-cut nipples and fast flow nipples with the thickener, they tried sippy cup and syringe feedings....he aspirated everything. He had good swallows, but what was happening was he let the fluid build up in his throat before he swallowed and did not completely swallow everything. So, there was residual fluid left in his mouth and when he went to take a breath he was aspirating small amounts into his lungs. He did well swallowing1/2cc of baby food at a time with a syringe. So the verdict is NO MORE BOTTLE FEEDINGS for now :-(. It took a lot not to cry when I seen him aspirating everything 1. because I thought he was over aspiration and continued to force him to eat 2. because I feel like I failed.  This does not mean it is the end of him eating liquids....maybe once he is well again and becomes more coordinated things will change...she also mentioned an electrical impulse therapy called E-Stem which is used to strengthen the muscles that are used to swallow. She said this may benefit him and reduce the residual left in his mouth. We can't try that until he is 18 months old adjusted age so 5 months from now. The plan for now is to g-tube feed him and give him puree foods by syringe 4 times a day when he eats followed by a pacifier to help him swallow and so he does not loose his ability to suck and swallow. I did manage not to cry there...and I had excepted by the time I got in the all is well. He needs a break. Maybe he will stay well. The speech therapist also said that maybe he was refusing to eat because he knew it was not going down right anymore. Though, when he was aspirating he was not coughing so they are concerned he does not feel it.

On a brighter note he must have knew I was desperate for something. He has been so alert tonight. He has started doing some of the things he has not done in weeks. While on his stomach tonight he started pulling himself up again with his chest off the ground. Then he proceeded to try to roll. It seemed like he did it on purpose and not just a spastic movement. He has rolled not once but 3 times in the last hour :-) He was on his back in his crib earlier and when I went back in to get him he has rolled himself to his side. I see him trying so hard to move. He is doing okay with his arms, but his legs just don't want to work with him. I'm still very happy...shows me he has not given up. :-)
The monster in his cage

Jacob pulling up tonight. He rolled 3 times from stomach to back :-)

 <><> Jacob's video of him rolling over!
Ava made me take a picture of her rolling because I was making a big deal about Jacob rolling LOL

Monday, November 15, 2010

better days........

I think things are slowly...hmmm very slowly getting better. Jacob ate 4oz for me this morning by mouth and 5oz last night when I came home from work. I think he is getting constipated again because Jack did not give him the miralax all weekend like he was suppose to. Funny thing with Jacob seems like with his eyes dilated (the stuff we put in them on Thursday night takes a week to wear off) he is looking around more. I'm excited to get his glasses back. I wonder if they will make a difference this time. Trying not to loose hope.

Andrew is really starting to take off developmentally. He is doing very well with his fine motor skills. He holding toys and really looking at them to figure them out. He has figured out how to turn several toys on and off. He still loves Jacobs light toy. It still tickles me when he sits in his baby cage pushing the button and holding it down himself to watch the light spin. I hope that maybe after Thanksgiving we will have the physical therapy going with him. I was hoping he would walk by Christmas, not so sure if that will maybe by the end of February. I only say this because the kid has no balance and can not stand on his own. He does not even attempt to stand by himself. He seems more organized and less scattered. After countless pops on the behind he finally stopped trying to escape when I change his diaper. He used to drive me crazy, constantly trying to roll over, crawl aways, or lifting his butt off the changing table over and over again. He definitely understands "No" now. He is drinking whole milk better and he is starting to eat more foods. He really likes peanut butter and jelly. :-) I still can't get him to eat anything not attached to breading, bread, or this baby is starting way to young loving bread.

I caught Ava building a dirt mound aka "castle" according to her on my patio in the back yard this morning. She actually woke up 2 times last night to go potty. She still had wet pull ups this morning though :-( She is currently lining her stuffed animals up down the coffee table. She is waking them up from bed time. Last night she was in her room trying to stuff like 15 stuffed animals in one of those doll sized play pens. She was having a fit because she could not find a place for monkey and asked me to help her. I shoved monkey into a spot, she take him out and yells at me that where I put him was the kitty cat's spot.

My dad called me telling me once again how he was getting excited. 1 week until our 1st family trip out of state. I wish Logan could be here. I'm sure I will be thinking of him the entire time. I've reasoned with myself about the whole autopsy thing I posted the other day. I logically know its not my fault, I read all those little things I forgot about in my blogs. I forgot that his blood pressure was higher than mine! I remember how he was on all those medication for stuff I don't even understand...there were a bunch of supplements for his electrolytes I think. My only regret was not waiting another day. He was unresponsive before when his co2 levels were high, but I don't remember him not making an attempt to breath. His final day he was unresponsive and not breathing on his own. I will never know if it was just a side effect from the co2 levels or brain damage that caused this. I feel that I never gave him a chance to try and get better. I was so overwhelmed and physically exhausted that I just wanted it to be over. I wanted his pain and suffering to end. I'm glad that his brothers and sisters got to be there with him. I'm glad Ava and my sister finally got to hold him. I'm glad I got to told him without wires and monitors. I glad people that loved him friends and family where there. I was unconscious for his birth so even has hard as it was I'm glad I got to comfort him in his death.

Saturday, November 13, 2010

Logan's Autopsy report and more doctor visits......

Today was better than last night. I don't think I mentioned on Monday that I picked up Logan's modified medical record...apparently they give you the big stuff and not all the nursing notes, lab work etc..they pretty much gave me radiology reports and doctor dictations. Just the modified report was over 50 pages. To get his complete medical history they expect me to pay $1 a page :-( Along with the medical records was his complete autopsy report. I wish I would have never read it. I will have to give details on it heart is just to heavy to have another night like I did last night.

I attempted to let my feelings out and talk about it with a friend online last night...which resulted in me having a near nervous break down...didn't know I still had it in me. I could be reading or interpreting it wrong, but it seems like everything that was told to me during that time did not show up on the autopsy. Last night I think I cried harder than I did when he died. It lasted for hours. I nearly hyperventilated and sat in the shower for a while and finally went to be around 3 am when I had to be up at 7:30. I guess I needed that. I felt like I was fine, didn't feel like I still needed to mourn him or anything, well I guess I never really mourned him in the 1st place. I felt a peace, and now white pages full of words and rereading post just brought all those painful memories back like they happened yesterday. I ended up reading every word I wrote from November to January 30th. I read how optimistic I was, how much faith I had that God would heal him, and finally I realized how much grace God had over me for me to walk through that storm in our lives and come out still standing. I realized today how little faith I have put into our current battles. I expected miracles with Logan, I truly expected him to be fine, to live, to grow, and eventually BREATH! I did get miracles from Logan. Life lessons I will never forget. How kind strangers can be. He taught me that there are people that care for others still and expect nothing in return. Blessing are still abundant in our lives, we have great friends and family. God continues to provide for our every need. There are still kind strangers willing to help others. I have been seeking harder than I have in a long time. After Logan died, needless to say, I didn't expect medical miracles anymore. I would love to see Jesus come heal the blind and have the cripple stand up and walk. That would nearly solve all my problems, unfortunately my optimism and faith have been shadowed with negativity, doubt, self pity lately.

I have not allowed these thoughts to knock me off my feet, but man I have nearly fallen to my knees. I wake up every day and fight with him to eat, give him 10+ doses of medication he requires every day, clean the vomit, stretch him, hold him, listen to his non stop whining, I'm there for every therapy rather I have to take him to it, or just have him ready when they get to my house, the none stop doctors appointments, the never ending changes of medication and medication doses. Then still be there for Andrew, Ava, and Jack not to mention all their none stop whining. I  told Jack how wonderful life would be if I had a switch to turn off my hearing at will...he didn't agree :-) After reading what life was like this time last year, you would think I would be jumping for joy and praising God that this is a piece of cake and not life or death. I don't mind taking care of Jacob. I'm his mom, it is my job. I'm just so discouraged and I could really use a little miracle with him. He has regressed completely anything that he did before, he stopped doing now. He hardly eats at this point. He does nothing but cry. That's a lie he still smiles and laughs when I sing to him, but no steps, no head holding up, no pulling his body up with his arms, no attempts to roll, nothing. Not to mention how he vomits up half his food every day and never get rid of his cold symptoms.

God continues to comfort me and I know he is there he is holding me up when I no long want to stand, without his grace I would have fallen. Last nights tantrum was good for me it was a release of feelings I could not let out 9 months 1 week and 6 days ago. Though I paid dearly for my tantrum last night with a stuffy nose and headache that would not go away still just needed to happen.

I am going to scan the autopsy report at one point and post it, but just a quick recap of what I took from it...all I wanted when I got it was why he got so sick...I still have no answers. The report started out by giving a brief history of him being an ex-28 week triplet and ended by saying he had a rapid deterioration over 2 days and pretty much ended that I killed him. Something along the lines of after the infant rapidly declined over the course of 2 days mechanical ventilation was stopped at the request of his mother. It did mention prior to this his hypercarbina (high CO2 levels) and his history of chronic lung disease and surgeries, but nothing was mentioned as to what his Co2 level was, there was no mention of his nearly non existent urine output, etc. The picture that was painted for me that day was that he was septic from some kind of infection in his body (I was told it started from a UTI), that his organs had shut down, they said there was blood coming out of his g-tube etc. This is why I made my decision. I figured if he lived at all that he would probably require mechanical ventilation for the rest of his life, that he would have essentially been a vegetable, and that he would have had extensive organ damage from the Co2 and acidosis. There were no lab values in the autopsy report, I did not let them cut his head, so there was nothing mentioned about his brain. What it did say was that there was no sign of infection in his lungs or anywhere else in his body. There was no pneumonia or infection in his lungs, his kidneys and bladder were unremarkable. The only thing that was noted at all was mucus plugging in his lungs, liver, and calcium deposits in his kidneys. It paints a picture of a sick infant, but never tells me what made him so sick. His cause of death was me having the ventilator turned off even though I was told he was already brain dead. So, I have no answers still, and if anything I have more doubt that I made the wrong decision. He might have died anyways, but at least I would not have it on my shoulders.

Today I pretty much listened to 2 songs from my favorite group ever Third Day. There songs just seem to speak to me and comfort me when I am about to loose my mind.

When the rain comes it seems that everyone has

gone away
When the night falls you wonder if you shouldn't
find someplace
To run and hide
Escape the pain
But hiding's such a lonely thing to do
I can't stop the rain
From falling down on you again
I can't stop the rain
But I will hold you 'til it goes away
When the rain comes
you blame it on the things that
you have done
When the storm fades
you know that rain must fall
on everyone
Rest awhile
it'll be alright
No one loves you like I do
When the rain comes
I will hold you

My life has led me down the road that’s so uncertain

And now I am left alone and I am broken,
Tryin’ to find my way, tryin’ to find the faith that’s gone
This time, I know that you are holding all the answers
I’m tired of losing hope and taking chances,
On roads that never seem,
To be the ones that bring me home
Give me a revelation,
Show me what to do
Cause I’ve been tryin’ to find my way,
I haven’t got a clue
Tell me should I stay here,
Or do I need to move
Give me a revelation
I’ve got nothing without You
I’ve got nothing without You
My life has led me down this path that’s ever winding
Through every twist and turn I’m always finding,
That I am lost again (I am lost again)
Tell me when this road will ever end
Give me a revelation,
Show me what to do
Cause I’ve been tryin’ to find my way,
I haven’t got a clue
Tell me should I stay here,
Or do I need to move
Give me a revelation
I’ve got nothing without You
I’ve got nothing without
I don’t know where I can turn
Tell me when will I learn
Won’t You show me where I need to go
Oh oh
Let me follow Your lead,
I know that it’s the only way that I can get back home
Give me a revelation,
Show me what to do
Cause I’ve been trying to find my way,
I haven’t got a clue
Tell me should I stay here,
Or do I need to move
Give me a revelation
I’ve got nothing without You
I’ve got nothing without You
Oh, give me a revelation
I’ve got nothing without You
I’ve got nothing without You

Now on a much brighter note, Jacob had 2 appointments today. 0930 this morning he seen the pulmanologist in St. Pete. She pretty much said the same thing everyone else said that he needs his GI issues fixed. Now if we can only get that through to the GI doctors head! She is also giving us a medication to dry up some of his secretions i.e. his drool which he chocks on because he refuses to swallow. I will try it and see how he does.

We had a nice lunch in Ybor at the Spaghetti Warehouse. Then we went home for nap time.

At 3:30 he had an appointment with the low vision doctor at Lighthouse for the Blind in Winter Haven. He examined his eyes and upped him prescription to +5.00 on both eyes and a  bunch of other numbers behind that...

Tonight was date night with Ava. I invited along my friend Jennifer and her son Josh. We went to see our 1st movie together since she was a baby. We seen Megamind on the new IMAX screen in 3D. Ava got scared toward the end, took off her glasses and said she was ready to go home. LOL I convinced her it was okay and we did finish out the movie. I think she really enjoyed it and I think in the future she is going to always expect "movie watching glasses" every time she goes to a movie theater LOL

Ava and Josh getting ready to see Megaminds

Thursday, November 11, 2010

All stopped up

The entire family, everyone but me has had a stomach flu this week!. Jack has even missed work for 2 days. I couldn't help but notice that while everyone else had liquid coming from both ends :-/  Jacob had vomit and no poop. I called the pediatrician and we went for a visit yesterday afternoon. She sent him for an x-ray and the results were that he was full of shit...literally!

Last night after liquid suppositories and a 1/2 teaspoon of miralax we had poop...3 diapers worth :-) He has not vomited since just before his doctor appointment. We have held down 16oz so far (all g-tube none by mouth) He is pretty congested and his chest is rattling, but not coughing. Ugh...this kid needs to get better!

Now that I'm done telling everyone about my families bowel habits :-) I will continue...

Andrew had his 1st cup of whole milk today. I've given him a few cups of Ava's skim milk which he pretty much threw back at me. Today he sipped the whole milk, spit it at me, then realized it was not so bad, and started drinking it LOL

Ava went back to school today. She cried when I dropped her off. It broke my heart, but man I needed a break!

My pediatrician is still pushing for me to accept in home nursing care. I don't know how I feel about this yet. I don't so much mind the weekends when I'm not home, but not sure how I feel about them being here with me. I also have trust issues. Some of the nurses working in home health are total idiots, ghetto, or just plain lazy. I think Jack could definitely use the help on his weekends. My sister told me she don't really want the help. They are trying to get 16 hours of care Friday, Saturday, Sunday, Monday. I guess I will try it and I can always tell them I don't want it.

We are getting excited about our up coming trip to AL for Thanksgiving. I hope everyone is well when we go. I'm going to take Ava on a date with mommy tomorrow. We are going to see Megaminds. Then on Saturday we are going to a farm to pet animals with our multiples group.

I think that is all the random stuff I can think to write for now <3

Tuesday, November 9, 2010

Dr. Ikeda eye doctor visit

Dr. Ikeda was quite alarmed to see Jacob wearing glasses and also acted like she was offended that we seen the low vision specialist doctor through Lighthouse. She asked why we saw him since she was already following Jacob. I told her that they offered, it was free, and they wanted their doctor to see him. So, I asked her why she did not put him in glasses if she knew he was farsighted and that the Lighthouse people wanted to know too. Her answer was that she feels that his eye turning and vision issues are related to his brain damage. She told me that she knew he was farsighted, but did not plan on putting him in glasses until later on.

My thinking is even if he can't see because of his brain, what would it hurt to have put glasses on him when she realized he was farsighted just to see if it helped? What would it have hurt? What if she was wrong? Low vision people seem to think the crossing is from being farsighted and that he has lost a lot of his window of opportunity because she did not put glasses on him early on.

Oh well, he sees the low vision doctor on Friday we will see what happens.

Sunday, November 7, 2010

Won't EAT!

Ahhh, Home from another LOOONNNGGG weekend at work. Jacob has not been eating well in over a month. My sister had the kids this weekend. She got Jacob to eat less than 12 oz by mouth all weekend :-(. He fights, arches, keeps his mouth open, and simply won't suck still. I don't know what else to do with him. I did almost everything I could to night to get him to eat for me. After much scream, chocking, and gagging he ate a whole 3oz give or take...he had at least an ounce on his bib.

Jacob has an eye appointment tomorrow with Dr. Ikeda. I can't wait to talk to that woman and see what her reasoning behind never putting glasses on my son was. I have pretty much been told he missed his "window of opportunity" to see normal because he went over a year being so severely farsighted and missed all the developental things infants have with their vision. I would not be so mad if she would not have been documenting the entire time that she knew he was. WHAT THE HELL? Was she just writing him off because he has Cerebral Palsy? Oh well I will update again tomorrow night.

I can't get over Ava and what she says sometimes. She continues to ask me for a baby sister all the time.  Especially in the last week she sits on my lap and tells me there is a baby sister in my belly. I keep telling her it is not time for a baby sister yet. She gets mad and yells, "YES YOU ARE!." The last time she said something to me was Friday night and she once again repeated that mommy has a baby sister in her belly. I once again tell her I do not. She then screams,You do have a baby sister in your belly and Daddy put it in there. WTF! Where did she get that from. LMBO!

I do not plan on getting pregnant anytime soon. We just don't have the money or the time off work right now. Jacob is so much day we will though. Which brings me to mine and Jack's decision we have to make by next week I think???? I have the annual GYN appointment :-/ next week and I need to decide if I want this stupid IUD out. Without to much TMI I'm sick of the irregular more than once a month visits I get each month LOL but at the same time I don't need anymore "accidental blessings" right now.

Well, I hope this kids can stay well this week. Jacob sees the speech therapist on Tuesday. We have a week long trip planned to go see my parents and my sister in north AL the week of Thanksgiving. I'm excited my favorite day of the year comes after Thanksgiving. I LOVE BLACK FRIDAY! :-)

Friday, November 5, 2010

24 EEG

Wow, I just have to announce that I just took a shower by myself with no interuptions and no kids trying to invade my shower time. Yea for me! TMI but I just could not help myself. ha ha

FedEx oh FedEx where are you? You website said my packages were out for delivery at 6:36 am and it is now 6:09pm. I am very excited. Monday I order the boys new carseats. Decided Ava got new carseats when she graduated from infant carrier to foward facing and that the boys should to. Plus Ava excess carseats are getting a little ratty (Ava has3 yes 3 and I only have 2 cars) Anyway, that is what is "out for delivery" 2 Graco Nautilus 3-in-1 Car Seats
I have several friends that have these car seats and love them. There are lots of great reviews on them. I can't wait to get them installed and take the babies for a ride. Oh my 2nd reason that justifies the new carseats is 1 of the 2 seats the boys are sitting in is maxed out. I must be doing something wrong. Jacob does not fit in it at all and Andrew hardly fits. Jacob is currently sitting in a Sun Shine Kids Radion 80. I have 2 Ava still sits in the other. I love everything about the seat except its lack of a cup holder. The 2nd Seat is a Britax Roundabout that was given to me by a friend. He kid sat in it for a long time. I think he was atleast 2 or 3. The babies are 30ish inches and only weigh between 21-24lbs and I have the straps totally at the max and I can hardly get the the buckle snapped without cutting of leg circulation. Oh my point once more...I CAN'T WAIT FOR MY CARSEATS TO GET HERE!!! It is pretty sad when you look forward to a carseat. I guess this is when you know your a dedicated parent lol.

Jacob went in for a 24 hour EEG that started yesterday. If you refer back to a preivous post that was titked Infantile Spasms. I talked about why we felt Jacob needed this study. They hooked him up to all the wires and started the test at 11:45am yesterday. He did well for most of the day considering Jacob's irritability. They did have to call the EEG tech in at 2:30 in the morning to fix his leads 3 of them came off. Poor lady had to drive from an hour a way to get there...oh well, sure she gets paid well to be "on call." Still felt bad though. His neurologist came in to see him last night while I was out. Jack was in the room and talked to her. Per Jack this is what was said: She said she reviewed some of the results from earlier that day when they 1st hooked him up. She said that she seen "seizure like" brain waves, but no actual seizures at that point. She said she was going to increase the doses on his Klonipine and Phenobarb and possibly start him on a 3rd medication. Jack did not know what the 3rd medication was. She also ordered blood labs for the morning to check on his current levels of his medications.

We left the hospital around 1pm today. The only change so far is just a change to his Klonipine. I suppose if she makes anymore changes it will be after she has reviewed the entire test. We had to push  a button and write down anything he did that was "seizure like" in a patient diary thing.

Poor baby was not happy last night. He cried a good part of the night and scratched the crap out of his faces. He still has a hacking cough and has continued to vomit up atleast half a feed once a day. I am struggling with feeding him. He does not want to suck on the bottle. He keeps his mouth open and makes noises or bites the nipple. Not sure if this is related to his CP and that he is loosing the infant suck reflex so he is having a harder time eating vs it just him being sick. Maybe his throat is sore. He sees the speech therapist on Tuesday. I'm excited to go. She has been out for 2 months. I ready to get back in the swing of things again. Not sure I will do the hyperbaric again. Seems like what he did improve on was only temporary anyways. Not sure if it was really worth the time, gas expenses, and effort. Though what did improve was great while it lasted. Wouldn't mind having my own hyperbaric chamber. I would put him in it every day. I think long term use daily would actually help compared to an hour a day (if you are lucky) for 40 visits, whick Jacob ended up getting less than 25 dives due to his ear infection and 6 day hospital stay. :-( Maybe if he had all 40 I would have seen more lasting improvement who know. I talk myself back and forth if I will try it again...:-/

Babies are up from nap time. I suppose I should go get them.
Jacob in his head gear

This was Jacob trying to eat his blanket in his sleep.

Just thought I would share my most favorite picture EVER! This is Ava and Me Oct 08(I think) at Sea World, Orlando, FLorida. I love her smile.

Monday, November 1, 2010


Jacob does not hold his head up in the gait trainer and the PT won't suggest any adaptive equipment to help, so I made my own LOL

I woke up this morning to find Andrew and Jacob covered in these red marks. I was thinking maybe it was bug bites from Trick or Treating last night, but when I put them to bed their faces were not like that. It is even on their hands, arms, and legs.

Andrew face really looks bad :-(

As I was taking this pictures to upload, I found Andrew on the couch heading for me. That little bugger climbed on the couch by himself to get to the table to get the remote LOL

My baby Giraffes on Halloween

The Trick or Treaters left to right: Michael, Natalie, Calob, Gavin and Ava