We have POOP in the POTTY & PICS to prove IT!

So here it is the proof that is James' little poo poo in the POTTY! I am so excited, we have been going pee pee for a little while, but not always on his cue mostly just randomly I place him on the potty and he pee pees but tonight while my husband was bathing him, he said ca ca and my husband asked do you want to go on the potty he said ya and went. I almost missed because I had just got home from work and was changing my clothes when it happened. We made a big to do about it and he got to have some pez candy from his pez dispenser that I just bought tonight on my way home, woo hoo!!!! I hope this is the beginning of more to come. What's my new year resolution HMMMMM! NO MORE DIAPERS SOON PLEASE.

I must recommend a video I heard of through another mom's blog that I think really helps during potty training time. It is called Elmo's potty time and we have been watching it repeatedly so much so that tonight after Mr. James pooped he said ELMO. Oh I must thank ELMO. What a guy.

I know he will not appreciate this photo when he is a teenager but I could not resist.

I hope all who read have a wonderful Christmas and the best for a GREAT NEW YEAR!!!!

James 2007

TIS THE SEASON

James with Santa, I can't figure out why this picture will not cooperate.

James with his OT Rosanne

James in the box.

James and his new robe.

James on a cold day in Phoenix.

James with his license to be so adorable.

James with his steelers garb.

Well my little man has had a cold. I took him to his pediatrician this week and his has a mild sinus infection with the beginnings of an ear infection more so in the left ear. So we are now on amoxicillian for 10 days. His eating of course declined and I never thought I would be so thankful for our feeding tube. He kept his weight and when they weighed him at the doctors he was 22 1/2 LBS of course that was with his clothes and shoes but still they can't weigh more than a pound.

As of today he is feeling well and his appetite is on the mend. This weekend we are going to decorate for x-mas, James first tree here at home, we skipped the last 2 years just because, but I am so excited to see his reaction. We saw Santa this week and as always James was a happy little lark. I leave you with some pics and will talk again soon.

We have WEIGHT GAIN to report!!!

So, today was our follow up at the GI clinic since James' feeding tube placement one month ago today, and I am happy to NO ELATED to report he weighed in at 21POUNDS!!! Now they are registering it as 300 grams gained from the date of the surgery. At check in pre-surgery he weighed 19.4LBS., But when we left the hospital since James had not had anything to eat times 3days except for a slow 20mls an hour he lost weight and when we weighed him at home after discharged out of curiosity (ONLY PREEMIE PARENTS OWN BABY SCALES) he weighed 18.8lbs. Then took ill times two days bringing his weight down to 18.5lbs. So all in all not only did we gain the so called 300 grams but he put back the weight he had lost too. SO THERE!! Can they give him so more credit please!

Any how we are so thrilled to say the least. Now we have a new goal we are to cut back from the 10 hour continuous night feed to 8 hours and gradually increase him by 5mls over an hour every 3 days to reach 70mls per hour times 8 hours, plus the afternoon nap time feed of 70mls an hour. We are to have him at a goal of 750mls (calories) via tube feeding and the rest by mouth.

So far so good, this week how ever was a rough one. James was gaggy at the beggining of the week and threw up his nap time feed yesterday. But this is the first since the tube placement and he has had a much better day today. So I guess this is to be expected every so often especially since it occured prior to the tube. But at least we know he will get more and all we have to do is hook him up. The cutest thing is he now calls the button and tube his baba. He no longer gets a bottle but maybe once in a while since his surgery. I think he has had three or four, but now when I hook his tube to his button he says baba. I never said to him either that this was replacing the bottle nor did I intend to stop, but I did want to and now it just kind of happened. No weaning no problems YEAH! Also,

James has been showing great interest in his potty chair as well as the big potty, so much so that we have been peeing in it 2 to 3 times a day and tonight he told me he had ca ca so we went to the bathroom took his diaper off dumped the dump in the toilet wiped his butt and sat him on the potty and said this is where you do ca ca and pee pee he then nodded his head got down and flushed and said bye bye ca ca. (We then washed our hands) So I think my New years resolution is to get my boy potty trained. Any tips are greatly appreciated. I also think I will buy some pull ups. I have been telling him that once he starts going in the potty regularly he can get spider man under wear or he can wear underwear like daddy in which he responds YEAH!!!!! I am excited too! He is very smart and I think he is ready, I think they learn from repetitions so if we do it often. I don't know first time mom but here we go and go and go!!!!!

So today was a good day and I thank you lord. Our week was hectic with therapies and doctor appointments. This is our schedule now, Tuesday PT, Wednesday Feeding, Thursday Speech and a visit from our early interventionist, Friday OT this week we threw in a visit to the Surgeon because of recurring granulation and today the GI, But such is life of a premature child. Oh and did I mention working 20 hours a week (@ Night) doing Laundry, Now if I could just clean my house too, I so think MOM's RULE!!!

I tell you though I have learned so much in so many ways and I am starting to understand a little of why god chose me to have a premature baby. I think any way, I have always since high school wanted to be an RN, from a CNA in high school, to an MA and caring for my parents and now my son I think this is his way of pushing me a little harder to achieve. Does not have to be so harsh, but OK already, I get it. So once my life becomes a little more balanced and James is in school and seems to be doing well, I am going back to school to finish what I started.

LIVE, LAUGH, LOVE!
Tracy

What a Boy!

Well my James is still doing great. I can not believe what a difference this feeding tube has made this far. Reflux seems better, no vomiting and he is still eating much better than before the tube???? I don't know what it is, but I will take it. I am amazed I totally thought the worst before and thought things were going to go backwards but so far so good YEAH!!!

The only problem we are dealing with severely is granuloma's he has one where they made the cut to place the button it just will not heal, and we are now on our 2nd granuloma in a week and a half. Last one we went to the surgeon's office and they burned it with the nitrate stick. I have found this wonderful web site with all sorts of tips for feeding tubes and the care. I tell you mom's are so SMART. So I am going to try a few. I also have not been placing the gauze pads around the button thinking that not covering would help it, but apparently from what I have read this is a big mistake so I stocked up on gauze pads and found a few other tricks to the trade, that I will be trying as well. Hopefully I can get this solved for him it seems to be very bothersome and painful. But again he is doing remarkably well.

He also has been speaking so well lately. New words are emerging and he is just so smart. He says the appropriate words at the right time, thank you, please, move and just understanding his world around him. If you ask him where daddy is during the day he will tell you (WORK! and it is so adorable. He also is finally getting into books I have been trying for a long time to get himnterested and now not only is he intersted he will bring you a book and he will say BOOK! I spent the other day with a good friend of mine Kelly and her son Aidan and James was saying their names. My friend made a comment to me that made me feel fantastic, she said she can not get over how well James is doing and how she felt he was quite on target for his age. She is a wonderful mom to a gorgeous boy who is 4 years old. We had a lot of fun with them on Friday and can't wait until our next fun day!

Well that is all for tonight and thanks again for staying tuned! Tracy

A little quick update. James is doing really well with his feeds, we have increased him slowly and he is at 45mls per hour, our goal is 50 to 60mls, depending on his toleration of course. I have yet to incorprate the BOLUS feeds (large amount over short period of time) because James has been eating so well. I tell you I did not see this coming, and the old saying if I would have know this then I would have done it sooner. So 18 days in to tube feeding and all is well. He today ate for lunch a half of a PB&J a whole brownie square some milk and bites of my Panda Express/to include some fried rice bites, a whole piece of Orange Chicken, and a quater of crab puff. Not to mention a handfull of crunchy cheetos a little prior to that plus a little ceral at breakfast, I AM OVER JOYED!!!! The other night he ate a whole half of a GRILLED CHEESE SANDWICH!!!!!

We meet with our GI clinic on 11/29 for weight check and evaluation of feeding/tube feeds to include a 2 day diary of all consummation for James. I will let you know the outcome of that. I have some great pics but I need to go get ready for work so I will post those later.

FYI for other mom's with GTUBE KIDS, I have found a tape that is absolutely phenomenal, it is called MEPITAC and it is used with tubes, it does not pull or irritate your child's skin once so ever, and may be re-used repeatedly, thankful for that because it is PRICEY about 15$ a roll(DONATIONS PLEASE :)! I have found this to be the cheapest so far, but it is so worth not having your child scream, cry and shake when removing the tape. As for James' button site it is healing slowly very slowly, still so very sore for the little guy and tends to be red some days and pink other days, not much drainage and so far no granulation's!

Thanks for reading, Love Tracy.

P.S. In regards to our ordeal at PCH, I have put in a complaint through our insurance company and am still working on my letter to the President of the Hospital for their careless actins of my son's well being (MRSA). Just so they are aware and to get it off my chest........ My letter is taking more time than it should but I want it to be effective and written properly. Any english majors out there or writers????? Thanks

HOME FROM THE HOSPITAL/THANK YOU LORD!!!

My silly boy trying to make the best of it!

Well our stay at the hospital SUCKED!!! Not that I was expecting it to be great, he we go I am going to rant away!

Monday surgery day was a good day only because the surgery was fast and there were no problems, outside of us not starting until 2:30pm instead of 1:30, no biggy they had a kids play area so we hung out there.

After recovery we go to our room, where we had a roommate no problem, until around 7ish when I over heard the mom talking on her phone and telling how her son had MERSA, I freaked, here we are just after surgery with an open wound subjected to a potentially fatal STAPH infection. I immediately after phoning my husband went out to the nurses station where I than began to demand a new room, and how could you room us with a child who has an contiguous infection, yes it is only through contact but HELLO! we have the same nurse. Well they explained to me that there were no rooms available at this time and that the nurse uses all the proper precautions. What ever! I then told them to put us in the hall way of course this was not possible. This child should be in a private room, which apparently they are short on and is saved for TB and children with head trauma for the quietness they require. SO! long story longer, James did not get transferred until 1:30pm the next day, and I never let the nurses open his dressing following surgery, they wanted to but I held my ground and refused until we got in a new room. I mean come on you are already at risk just walking through the door of a hospital for disease and infections, but to willing subject a child to it knowing it is there is wrong and they have not heard the last words from me. Lots of other things went on in that room, but I will leave it at the worst, I think I slept an hour at most.

Tuesday we hooked James up to his first feed although he had thrown up twice prior it was just green bile post anesthesia, but then later he did throw up formula. So off to get an X-ray to check tube placement. Everything was in place so back to the room and onto a new formula. But the old orders read 20mls/hr then to increase by 10 every 4 hours until a max of 50mls, that was before the X-ray. Then the orders changed to 20mls/continuous, after the x-ray in fear James could not tolerate such an increase this early. Well the night nurse read the old orders so at 2:30am or so I can't remember, James threw up not alot but our goal to get discharged was to tolerate feeds. Well that's when the nurse discovered she had read the old orders. GREAT!!!! So after that was settled James did well. He was still not a loud anything by mouth(NPO) so we thought.

Wednesday was a fun day with all the Halloween stuff going on at the hospital, later that night they were serving pizza and showing a movie, so we joined the festivities! Thinking James was still not allowed any food or drink we started sneaking it to him he was starving since he had not been feed in almost three day, and then was slowly fed through the tube, then we get back to the room and I admitted to the nurse that we had fed James at the party, she then said OH! he can eat now!!!! another GREAT. Though no food trays were ever delivered so.....

Thursday I went to the cafeteria with James in tow and ordered breakfast he ate like James, and later that afternoon I called the cafeteria to order him a lunch tray, they showed in there system that James was tube fed only, HELL O! So I stormed out and was not very nice. Well we got James' lunch , which he ate a quarter of mac n cheese and 2 bites of fish sticks/Hence the need for tube, that is our usual eating amount except for our good days it can be a tad more, any how , the nurse came in and checked to see how much he ate, and exclaimed WOW he did good, no you fool I ate the rest of the Mac,(did not want the fish sticks though) then she says to me your not to do that we have to track his intake, What am I a mind reader!!!!!

We could have gone home Wednesday by the GI's stand point but were encouraged by the surgeon to stay for 1 more night to get another round of antibiotics and a full 24 hour feed with no problems, we stayed HMMMMM!! DUMB D DUMB DUMB!

We came home mid afternoon Thursday, But that Thursday morning when I asked about our discharge and was told it was on hold! Great here we go again, so I explained to the nurse that my husband was coming at 1:30pm and we were leaving with or with out discharge papers. So by 11am discharge had been completed, but I could not leave until 1:30pm, this went over like a lead balloon with the nurse and began a battle of the FITS. I no longer could receive nursing help, James was still hooked to a feed which I did, not hard but well you know, I could no longer get pain meds or ANYTHING, nice children's hospital HUH! Way different than the NICU experience and that is why when we had decided to go ahead witht the feeding tube, I had little reservations regarding the hospital, felt great with the team of doctors and well over all was at ease to a degree. Not the case BOO HOO BIG TIME!!

So home now and everything is going great! James is tolerating his feeds well, He is still very very sore and we have a hard time caring for his button and placing the feed tube to him it is a two person job right now but I know that will get better. Main thing is he is doing great and outside of our hospital nightmare, no regrets. James is eating food by mouth well also, so much more than I thought he would have before the surgery I anticipated not much eating but not the case so far so good! I leave you with some pics from our stay.

We bought this wagon for James yesterday they had one at the hospital which he really enjoyed!!

RIBIT, A volenteer dressed for halloween!

and some more......

James dressed as the cutest cowboy I have ever seen. They handed out costumes donated from a local store. THE END!!!

This and That and BIG DAY MONDAY!

Well today we took James to Encanto park where they have rides and paddle boats for some fun. I forgot about this park and how much fun it is. The paddle boats were closed do to a private party but James got to ride on some other fun stuff, cars, tea cup twirl and we tried to put him in these bumper boats but he cried mainly because he wanted to get in the water instead of the boat, not to mention the kid operating the boats was a wee bit scary to James with a crazy mo hawk thing and piercings galore so he was a bit apprehensive to begin with. But I am in a way better about it, because the boats did not have belts in them and my little bugger loves water so much he may have jumped in. We waited in line a while though, so I was a little bumbed but quickly recovered, god works in mysterous ways so it probably was going to be a catastrophe. We had lunch then came home for naps, Oh how I love naps. That is the only thing I miss the most (outside of James of course) about having a job is my naps.

Tonight we might go to boo at the zoo and have James dress up in is Halloween costume, he is going to be spider man and he loves Halloween all the scary stuff make shim laugh in fact we decorated outside a bit and he even has been in his way saying Halloween, and I have been working on the trick or treat, of course I have to be silly and say trick or treat smell my feet give me something good to eat every time I say it and he just howls with laughter which makes you do it even more, because his laugh is so contagious.

Monday is our big day, feeding tube day. All though I am a bundle of nerves, as is my husband we are ready. I have finally got a phenomenal feeding therapist and we are switching OT's the beginning of November who is phenomenal, as well I think the feeding tube will enable us to be more relaxed with James' feeding issues and hopefully give us the time we need to conquer them. We will no longer have to stress as much because he did not eat enough and is not gaining weight. I can not wait for the weight to gain!!!! With that being said I of course am teary eyed. I have spoken with a lot of mom's who's children are now off the feeding tube but were one day in my shoes and have nothing but positive stories with great outcome for there children . So that helps ease the tension of the decision. But I really think this is the best thing for James and us at this time in our life's. So wish us well and I will post after surgery.

I will leave you with some photos to enjoy, just ignore me I am the most un photo genic person on the planet.

Thanks for visiting and all your support. I recently did a magazine article for parents in the NICU life and one of my comments mentioned was blogging and how mush support you can get and how therapeutic it can be, so thanks for that.

Tracy

You don't know LOVE until you have a child!

How many agree? I can not believe how much I love my son. It is just unbelievable how he fills my heart, sometimes it aches with love, sometimes it really hurts with love or angers with love but it never stops smiling with love. He is so amazing in so many ways and everyday surprises me with new amazement. I love being able to be home with him, I love how he still smells like baby and how when I hug him he squeezes me back tight and pats my back. Or how when he kisses me he follows with MMMWA! I love how he repeats or tries to repeat everything I say(got to be careful) I sometimes find myself spelling words because even though he may not say them yet he knows what they mean. I love how he tries to do everything I do, especially when I am cleaning he likes to grab wipes and wipe things or dust, and vacuuming the kids cries when I stop. I love going into a room after he has been playing and finding all the creative things his has done, like throwing my hair clips in the trash or throwing a shoe in the sink. I love hearing the pitter patter of his feet coming down the hall way just when I thought I had escaped to go to the bathroom by myself :) I love how he remembers things that happened days or even weeks ago,or things that are different from before. I love how I can show him something once and he does or tries to do it until he has successfully done it on his own(sometimes). I love his laugh and how sometimes he covers his mouth when he laughs I even love his temper and whining because he is so like me. I love to watch him sleep or play when he does not know I am there, I love it when he dances and tries to sing a song. I love going for walks and how he points and squeels just over leaves blowing down the street, I love how he now says mama water or mama rocko (our dog) And I espeacially love in the mornings when he wakes how happy he is and how he hands me his blanket. I love how sweet he is and well, I guess I love being his mom. I now know how much my parents loved me!!!

BIG FOOT

So I feel horrible, Since James does not grow much in the weight department and his height has been the same for a while, I neglect to think about his feet growing, DUH!! The other night we went for a walk and he had on his sandals every so often he would stop and sit down and grab his foot and say OWE, (one of his new words) I would check for rocks but nothing. So we continued on and he continued to do this every so often, finally I just took his shoes off.

So Monday I decided to go to the shoe store and get his foot measured, are you ready for this he was a size 6, I repeatedly had the sales girl measure them again, because I just could not believe this. Sure enough he is a size 6, his sandals were (Oh I am so ashamed) a size 4 and his sneakers a size 5, I always buy sneakers a little bigger. His sandals did not look to be 2 sizes to Small on his foot although his heel did hang over the back a little. So we bought some new shoes in a SIZE 6! I guess all his calories are going to his feet, oh and his head those seem to be the only thing with steady growth. So I guess he will be this brainy smart child with big feet. (Ha Ha)

Tracy

Surgeon Appt./Feeding Tube Surgery Scheduled!!!

So we saw the surgeon yesterday, which went quite well, outside of us being there for 3 hours and me being late to work. Our appt. was for 12:30 and we did not see the doctor until 1:30pm, he met with us for a while and then we had to see the RN for feeding tube education, which was confusing because for some reason she had to show us all of the different feeding buttons even though those were not the kind we were getting. Then off to the surgery scheduling desk to schedule. I was hoping for sooner than later, but they had nothing until 10/29/2007, so there goes our Halloween which is one of my favorites. However I am going to take James to Boo at the Zoo the weekend before Halloween and still get him a costume.

So back to the feeding tube, my husband and I left of course feeling over whelmed to say the least. The doctor had asked us if we felt we had exhausted all efforts of feeding with James prior to this decision and we felt that we have with the exception of going to another state which just is not feasible right now. He agreed that we lack feeding therapist and tend not to have the most intensive therapies available, when comparing to other states. Which is so puzzling because people come from all over for care at Good Samaritan and Phoenix Children's hospitals. He did say he is working on a program. We will be getting the Bard Peg feeding tube. The scary thing to me is what we learned about the care at home, (ie), if the PEG comes out within 2 hours the opening could close, if the Button moves around could make opening larger and the most concerning was how sore she said he would be for the first week or two and having to insert the tube will be discomforting, I wanted to cry. In the back of my head I question are we doing the right thing, but I think we are James has only gained 1lb in 9 months.

Our surgeon shared with us that he had a preemie as well 13 years ago, 26 weeker, who though was slow to gain he gained more than a 1lb in 9 months. He shared some of his son's photos with us and said no one understands the life of preemie parenting unless they are the parents to a preemie. Very comforting to no he has not only hands like god for surgeries but knows the life that goes along with caring for our special miracles. He was so personable and comforting that I have great confidence in him performing surgery on James, again. He is the Surgeon that performed James' PDA and bilateral hernia repair as well as circ. way back in the early days of NICU living. He also went on to explain all the things that could happen to James later if we did not speed up his weight and growth. So I am ready to get started.

Thank you for all your responses to my last post it is helpful to know that I am not alone.

Tracy

Our second opinion and our next journey

Well it is official, my son James is in need of a FEEDING TUBE. We had our 2nd opinion on Wednesday to confirm the need for the feeding tube. James is just not making progress with gaining weight. Although we do not see any significant problems with development thus far if we do not go forward with this, at the age of 5 or 10years we could have major issues with learning and growth and by then it will be to late.


I was pretty impressed with this new Doctor, and am going to switch care to her, she is a GI through our children's hospital. So we meet with the surgeon 9/26 who has also done James' surgeries in the past while he was in the NICU so some comfort there. The past two days have been pretty tough for me, but the more I think about it and the benefit to James, the better I understand the importance. So I will let you all know as I do with what is going on. Any words of encouragement are greatly needed. I guess it is good we do it now since he already does have the oral eating down just does not eat enough. Any how, they are also going to set us up for intense feeding therapy through children's hospital, after the surgery to help us try and progress more with his oral feeds. He does not have any severe oral aversions, just with his reflux and dysphagia which causes him to only eat the minimum.


Now on to some fun stuff. Today we painted Oh what fun we had. Here are also some pictures from last Sunday FOOTBALL!! ANYONE!!!

Yes my husband is a huge STEELERS fan so much so one of our spare bedrooms is painted with black and gold steeler colors. Pretty oh so pretty!

Talk to you soon.

Where do I begin

Let me start by saying how excited and relaxed the past week and a half have been. Since James has been on his new regimen of medicines he has been eating well, and I think actually able to enjoy it too. This morning he had ice cream with ovaltine and after every bite he actually said MMMMMMMMMMM and was kicking his feet with excitement.


We are still on the Reglan, we switched to Prevacid twice a day AM and Pm we have added Zantac twice a day and give him Mylanta in between all of that. So we are constantly giving him something to hopefully keep his reflux at bay and let him eat, enjoy and put on some weight. I don't want to jinx it, but I want to jump and kick my heels. Every night he has been getting fudgesicles, popsicles or ice cream and eating the whole thing. Not to mention eating his food and actually chewing and swollowing instead of chewing a little and spitting out. He has even been eating some granola and blue berries. My husbands says lets think outside the box and give him lots of different things everyday.

My husband is doing awesome with him and was the one to start giving him the Mylanta after speaking it over with our GI. He is so great with James and helps me out tremendously. I am very lucky to have him.

Yesterday I had a great time with my girlfriend Caroline who came out for a visit from California. I went to high school with her and lost touch after 2003. So I met her and her mom for lunch, Pasta and Wine MMMMMMMM, I was kicking my legs too. Then her mom left and Caroline and I did some shopping and got pedicures. Oh how I needed that. Although the lady doing the pedicure nicked my toe, Ouch! Then we came back to my house for her to meet James.

James had a good dinner and

What a great day, I wish I could freeze frame and make the day longer.

Love Tracy

Where to begin

Well, we had our GI appointment, Monday, and the same. Except we now are on Zantac which we were when he was in the NICU and home for a little while. We also are giving him Mylanta in between meals. I feel like MEDICINE WOMAN. This is our schedule, AM Prevacid, Reglan and Mylanta, Pm Reglan,Zantac and Mylanta, Dinner PM, Prevacid, Reglan and Zantac. No wonder he does not want to eat his whole day is MEDICINES. But if it works then it's fine.

Today was a great day eating wise, well the best in about a month. He actually had a pretty good lunch and a hearty dinner including a bowl of vanilla ice cream with ovaltine on top, my husbands creations.

Tomorrow we go for a barium swallow study. We see another GI Doc next month for a 2nd opinion and then we decide on the feeding tube. I am more at peace with this idea as well as my husband. Especially when I read other blog mom's post about blenderized diets, I would love to be able to feed James more healthy fattening foods. But we are going to try and manage his reflux with meds and hopefully get him to put on some pounds. There were recent talks of doing a Fundo but after lots of research and talking with another mom and our GI I don't feel James is in need, he does throw up but it is not our main problem and is only once in a while. It is my understanding that the Fundo is for severe vomiting and life threatening issues. Although James weighing only 19.12lbs and at the beginning of this year January was 18.4lbs. is severe and life threatening for growth reasons I strongly do not think a fundo will help this issue. The feeding tube however may be a good idea. One of which they should of done before leaving the NICU, But can't go back i time. So I hope what ever decision is made it is the correct one. But I would relish the day I don't have to hear the word failure to thrive and WEIGHT GAIN UGGGG!

Other than that my job is going really well and it has been the best thing for me. I also got my first pay check already woo hoo, only a weeks worth so it is pretty much gone, I need to learn to budget. But most of it was spent on my little man, a new toy, like he needed that. It is so funny how we change when we have children, I used to be very selfish, I guess because I could but now when I go to the mall or such I am looking to buy James stuff no longer me. Funny, I love it though and can't wait until CHRISTMAS, one of my favorites.

I have a girlfriend coming out this Labor day from California, we went to high school together. I can't wait to see her it has been a while. I need a girls night out.

Thanks Tracy.

James, James and more James

James using his saftey glasses to pertect his head. He wore these for a good 1/2 hour until I busted out the camera!!! then he got mad in his cute little way.

James brushing his teeth. sorry I don't no how to rotate.

And yes he finally got a job at HOT DOG ON A STICK, so now he can by his medicines, diapers and pay his Co-Pays at the Doctors.

Alot can happen in a week!

So, I have a week of my new job under my belt. Things are going really well. I am catching on quick and feel real comfortable with everyone. So YEAH!

James had his GI appointment on Monday, and of course same ol' same ol'. Does not weigh enough and talks of a NG tube and now fundo. I don;t think so. First off how in the world would you do a nose tube on a very strong, determined, 2 year. I can not even suck boogers out of his nose when he can't get them all out by blowing. Do you really think he his going to leave it in there if I was successful in inserting through his nose. NOOOOOO! These doctors sometimes you want to smack them upside the head and say do you have children? As far as the fundo, I know my son has reflux and it his hindering his weight gain, but I have read alot about the fundo and I just don't like the idea of if you have to throw up you can't so it just stays there. Speaking of which he does not throw up very often unless of course he is sick. When he does throw up it usually is because of something he is eating got caught or occasionally on his medicine, I know it is great for reflux and if we can;t get weight on him like we should I would think about a feeding tube in the stomache with out a fundo!!! So cross your fingers. We are going to see another GI for a 2nd opinion as well as a dietician/nutritionist who by the way specializes in preemies!!! Hard to come by. So we will see.

Tuesday he had a hearing test. He was so good throughout the whole testing. I was thinking he would not be cooperative, do to them having to stick things in his ear, but he was great and past with no significant problems. Our Neruologist ordered this test just to make sure for speech he had no hearing issues. Since he is behind in speech. So another YEAH!

Friday we had our 2 year old well check. Which went as I predicted. Weight 5th %, Length 30th% and Head 25th%. At least we are marks ont he CHARTS, which I just want to rip to shreds!!

We have finally found a new Physical therapist, Speech therapist/Feeding so it was a good break while it lasted. But, I am anxious to get started. Our OT mentioned to me again that at 2.9 years of age he will be going to preschool, I think I had a heart attack. That is only 8 months away. OMG can I stay with him. James does not leave my side unless he is with my husband, my good friend or occasionally my mother-in-law, but if I can take him with me, ie: the dentist, hair cut etc. he is always with me. I guess it shall be good for the both of us.

I just worry he has been through so much to be alive I can't let myself depend on someone else to care for his well being. I am afraid. I have already decided he is not going to drive until he is at least 30 something.

Well, hope everyone is well. I enjoy reading all your blogs and your miracle children. Tracy

I GOT A JOB!

So I went on an interview last Thursday at an Urgent Care center in Scottsdale. They called on Monday and offered me the job. Excited yes, nervous oh yes, It has been 2 years since I last worked. I am looking forward to it though. It is only for 4.5 hours Monday through Friday from 4PM to 8:30PM, so I will still be home in time to tuck my baby in to bed, if things go right I will just miss dinner and bath, that it itself will be a break. I like bath time though but dinner is exhausting.

I am looking forward to the interaction with many different people, I am a big people person. I also will be happy to take a shower everyday and do my hair and wear make-up again. Not that I don't bathe, but most of the time if we don't have plans I don't even change out of my pajama's. My poor husband must just be so attracted to me, HA HA. But seriously, I am just lazy, plus I usually get thrown up on, or food thrown at me or well you know, so why bother, It sure makes doing laundry a breeze. I have a uniform I will be wearing so that is a blessing in itself, how easy, the only thing is there are 5 different colors I have to remember to wear for that particular day, hopefully I don't wear blue on khaki day. I have worn different shoes before same color just different style.

I am ready nonetheless, At least I think so. I think it will be good for my husband and James, not to have me here. when we are both home James is still all about me. So they need to have some father, son time. We are always together, James and I and once and a while my husband will take James over to his father's house or to the park but usually we all go as a family. Especially since I am usually cooped up in the house all week, Heck I get excited just going to home depot in the middle of the week, I see it as an outing.

So wish me luck. I start Monday 8/13/07. I am sure I will have days where I say WHAT WAS I THINKING, but all in all it will be good for me and I can handle 4.5 hours it will go by quick. Oh and the money will be nice too, living on one income has been a challenge, but my the things you give up not realizing how much you were spending before. So some money to help out here and there and maybe a pedicure once in a while more lunches with friends and some more activities for baby. YAHOO!

I FEEL BETTER, NOW!!!

I was searching the web and came across this, which made me feel better. I have been having a blue kind of day. But knowing that my 25 weeker is only about 2lbs away from an average 2 year old and only seems to be delayed with speech, puts life into a different place.


Two-year-olds like to be independent! Favorite words are "Mine" and "No" and "I do it!" Emotions take on a roller coaster-like quality as 2-year-olds can go from excitement to anger to laughter within a few moments. A great deal of time is spent exploring, pushing, pulling, filling, dumping, and touching.Two-year-olds are surer of themselves and of what they can do as they grow. Their bodies stretch out, and most will lose the potbellied look during this third year of life. Their appetites lessen, and they may be particular about food. They are still growing fairly rapidly.Toddlers are very attached to their caregivers. You may find them trying out new ideas and exploring their surroundings, but still staying close to you as they need a base of support and trust. Two-year-olds are usually interested in other children. However, social interest and physical abilities sometimes collide as a hug becomes a tackle and a gentle pat becomes a whack. You will need to teach children how to express affection appropriately.

SOCIAL AND EMOTIONAL DEVELOPMENT
plays alongside others more than with them - CHECK
acts shy around strangers - CHECK
likes to imitate parents - CHECK
easily frustrated -CHECK, CHECK
affectionate - hugs and kisses - CHECK
insists on trying to do several tasks without help HALF OF A CHECK
enjoys simple make-believe like talking on phone, putting on hat - CHECK
very possessive - offers toys to other children but then wants them back - DON'T KNOW
needs considerable time to change activities - ?
capable of frequent tantrums, which are often a result of his inability to express himself even though he has ideas - CHECK, CHECK, CHECK
can show aggressive behavior and the intent to hurt others - NOT YET!
can be extremely demanding and persistent - CHECK
destructive to objects around him when frustrated and angry - CHECK
possessive about caregiver's attention; show feelings of jealousy - CHECK
has fears and nightmares - ? He wakes in the middle of the night about 3 X's a week ???
has sense of humor; capable of laughter - CHECK
shows interest in dressing, brushing hair and teeth - CHECK, Mostly Undressing!
cannot sit still or play with a toy for more than a few minutes - CHECK, Which I found this one interesting, because our OT and our old ST were so focused on getting him to do an actvity for 3-5 minutes!!!

PHYSICAL DEVELOPMENT
weight: 22-38 pounds - Almost CHECK 20lbs. So if this is true a we are not to far off.
height: 32-40 inches - CHECK 33 inches
has almost a full set of teeth - CHECK for a long time now.
walks up and down stairs by holding onto railing - CHECK
feeds self with spoon - CHECK
experiments by touching, smelling, and tasting - CHECK, CHECK
likes to push, pull, fill, and dump - CHECK
can turn pages of a book - CHECK
stacks 4-6 objects - CHECK
scribbles vigorously with crayons or markers - CHECK
many children (but not all) will learn to use toilet - CHECK has gone pee pee a few times.
walks without help - CHECK
walks backwards CHECK
tosses or rolls a large ball - CHECK and CATCHES.....
stoops or squats - CHECK
opens cabinets, drawers - OMG CHECK
can bend over to pick up toy without falling - CHECK but an occasional oops sometimes.

INTELLECTUAL DEVELOPMENT
enjoys simple stories, rhymes, and songs - CHECK
uses 2-3 word sentences - NOPE!
says names of toys - NOPE
hums or tries to sing - NOPE, but he will hum if I am.
enjoys looking at books - CHECK
points to eyes, ears, or nose when asked - CHECK
repeats words - CHECK, Just now started that
interested in learning how to use common items - I would say CHECK

IDEAS FOR CAREGIVERS
Baby-proof your house again. Two-year-olds are taller and more skillful at opening doors and getting into mischief.
Read aloud to children every day. Encourage toddlers to look at books with large pictures and sturdy pages. Simple story lines are best.
Try to expand a 2-year-old's knowledge of words and sentence structure. Let her hear the correct word order, but don't demand that she imitate you. For example, if she says "more juice," say "Anna wants more orange juice."
Encourage them to identify noises like vacuum, tap water, dogs barking, thunder, airplane, and car.
Let toddlers help you with simple chores such as picking up toys or putting clothes in the laundry basket. Encourage them to name things that you are using.
Add new information to what a child is saying. "Yes that's a blanket, a soft, warm blanket."
Give toddlers clear and simple choices. "Do you want to drink milk or juice? Do you want to wear green or blue socks?"
Know how to handle a temper tantrum:1. don't yell or hit the child,2. remain calm,3. talk in soothing tone,4. put your hand gently on child's arm if possible.
Provide newspaper, flattened grocery sacks, and computer scraps for drawing and painting. Color books, workbooks, and ditto sheets are not recommended.
Avoid making models of clay or drawing pictures for children to copy. They learn more by working out their own ideas, and adult-induced items can actually hinder learning.
Do not expect toddlers to share or take turns. Right now they are focused on learning how to physically handle themselves and on learning to talk. Learning to share will come later.
Provide spaces where toddlers can spend time alone. An old cardboard box or a blanket over a card table works great.
Avoid pressuring children to be right or left handed. A few 2-year- olds will begin to show preference for one hand, but many children will continue to use both hands for a few years.
Provide safe outlets for physical activity and space exploration like small steps, boxes, barrels, tires, pulling and pushing toys, ride-on and ride-in toys.
Provide opportunities for learning about cause and effect by giving toddlers many opportunities to fill, dump, collect, gather, give, hide, and seek.
Play "parade" or "follow the leader." Sing sequential songs like "Old MacDonald" to explain sequences.
Encourage verbal skills by giving simple directions like "Close the door, please" or "Would you pick up the doll?"
Encourage a toddler's love for imitation by teaching fingerplays and songs. Play "you are a mirror." Stand or sit facing the children and have them copy everything you do. Reverse roles and let the child lead while you mirror the actions.
Encourage sand, mud, clay, and water play. Toddlers enjoy messy play and learn a great deal from mixing, sifting, pouring, stirring, and shaping.

Preemie Poem

I came across thispreemie poem I thought I would share.


At first glance you were so small I hardly saw a baby at all,
with tubes and wires a frightening sight
but you were in for a big fight.
Not even two pounds just skin and bones,
Your body so small with problems so big,
but you fought hard and continued to grow.
So many fears,So many tears. Precious child you are home today,
I love you dear, more than words can say.
A miracle baby A gift from God.You showed the world You showed us ALL!

(c) Dianne Whitman All Rights Reserved

P.S.

I don't know how I forgot to mention how he has learned to open doors and the fence gate. We have a little fence in our back yard that separates our major part of the back yard and he has figures out how to open the gate it is his perfect size. Luckily we don't have a pool, but we do have a spa with stairs which he loves but it is covered it is just the stairs we have to be concerned about. So my husband put a little lock in the latch. He tries to open all the doors in the house turning there knobs, but he is not quite strong enough to pull them open. But our living room door has a different type of handle so that one he can successfully open but the security door there is no way. So that is what lately my days have consisted of watching my child try to escape. Funny guy.

James is blossoming

James is just blossoming. He is repeating words, such as thank you, good boy, wow, uh oh, ca ca,water and rocko our dogs name, to name a few. Of course they don't come out exactly, but you can understand what it is he is trying to say and he is so articulate you can just see how he is trying to form the words, so cute.

He also understands so much, today he got all of his shoes out of his closet and they were all over in the living room the hall, so I went into his room and said OK let's clean up go get the shoes in the hall way and sure enough he comes with the shoes from the hall. Then I had one shoe in his room and the matching one was in the living room I said go get the one that matches this one and yes, he brought in the matching one and so on. Also he has gone pee pee in the toilet a few times just playing around with the idea he is not quite ready on that level yet but at least he is getting familiarized with the idea.

He can put shapes in to his shape sorter and we are learning colors, so far he does great with yellow and blue. We do colors with different toys and mm's, our NICU nurse Natalie gave us this idea and then he gets to eat the mm's! Then he is all hyped up on sugar. Maybe we will do this activity at Nats house, what do you think???

Anyways, just a few things, I have spent the last couple of days trying to get a new speech therapist. I stopped going to the place we were going because James kept getting sick, we did feeding therapy there as well, and even though James is not a big guy and does not eat a whole lot, I felt he was better off not going, thinking this is where he was getting sick. I still don't feel we need feeding therapy because he does eat a variety of foods it is just getting him to eat more than 4 bites!!! But if there is a speech therapist out there who does a combined speech/feeding that would be great. So far no one has any openings so we have been placed on a waiting list. So we shall see. Other than that everythings going pretty good. James is still 20lbs. and holding, but at least he is not loosing. Poor guy is going to be rear facing in his car seat until kindergarten!

I also have decided to look for a part time job in the evenings, my husband gets home at 3PM so I figured I could do something from 4PM to around 10Pm or so. Just to get me out and earn some mad money, I have been home for 2 years now and love it I do, I get a little bored and feel that James and I could use a break. But so far nothing. I thought the hours would be easy to find and there are jobs out there, but no one is ringing my phone. I work in the medical field so I have applied to hospitals and other facilities open all night or late. So wish me luck I have time no rush so hopefully I can find something to my liking.

TAGGED AND I AM IT!!!

Well I will try! I don't think I know 8 people who blog to tag, hope that is OK. 8 facts about myself, HMMMMMMMMMM. Hope you don't get bored. I have to post the rules first.

1. Each player starts with eight random facts/habits about themselves.

2. People who are tagged need to write their own blog (about their eight things) and post these rules.

3. At the end of your blog, you need to choose eight people to get tagged and list their names

1.) I was born in Cape Cod, Massachusetts, and moved to Phoenix, Arizona at the age of 7. My parents wanted a change. They owned a restaurant back east which caught fire and they lost everything. So a change was in order, why the HOT Desert I will never understand.

2.) I met my husband at the age of 20, who had been my neighbor for 10 + years, we dated for 2 months, then moved in together. Seven years later we bought a house then three years later we got married. We wanted to make sure we were right for each other!!! Ha Ha.

3.) I am an only child, and both my parents and I were very close. I lost my father in April 2005 due to a ruptured colon and sepsis. He was in the hospital for 6 months before his passing.

4.) My dear mother, my best friend, was diagnosed with metastatic melanoma in the middle of 2003, she battled the disease like a warrior but had to surrender in November 2005.

5.) I miss them everyday and thank them for the wonderful life they provided for me.

6.) My husband and I tried to start our family in August of 2004, we found out we had succeeded February 14th, 2005, Happy Valentines day, HONEY!

7.) My pregnancy was rocky from the start with many visits to the ER. Then 6/19/2005, yes father's day my water broke, I could not bare to tell my husband we needed to take another trip to the ER, So I waited most of the day. Thinking it was all right, I even had plans to see a movie with my mom. By 1pm I was having the FERN test which resulted in + amniotic fluid. Which then began my 2 week 3 day inpatient stay until 7/7/2005 @ 12:35am when my.......

8.) 1LB 6OZ miracle entered our lives. I was never so scared or upset in my entire life. The emotions of not knowing what lied ahead. But after 120 days which seemed like forever, our 7LB 6OZ baby boy joined our lives and taught us how precious life is and to live for the now!

Well there it is in a nut shell, 2005 was not my year, but I have grown stronger and give that much more. Tracy


.

Sleeping Beauty

So sometimes I look at him and just can't believe he is mine. And how amazing he his. He is maturing so rapidly and understands so much. Sometimes he does things that he shouldn't be doing but I watch for a minute because I am just so intrigued by how his mind works. I love this little guy so much I just can't get enough of him. Thank you James for choosing me to be your mommy, you have changed my life and give me so much joy.

Love from your mommy.

Just some miscellaneous pictures

Well it seems I have figured out how to down load pictures from my digital.

My husband plays guitar so James has really taken to playing on his. He has an acoustic and electric kids guitar and puts on quite the show. He also plays/BANGS on his drums and symbols like a pro, and then stands up throws his drum sticks to the "crowd" throws his arms up tries to say TA DA and bows, which of course I showed him how to do the bowing that is. He is cheap entertainment. He cracks us and our friends up every time.

I guess my husband is on to something if we start him early enough you never know maybe a rock star, lets hope his instrument of choice will not be the drums!!!PLEASE

James' birthday cake made by my sister-in-law
I chose Jay Jay the Jet plane because James
really is into this character but I could not buy
anything but on EBay. So she did the cake because
that to I could not order. But she did magnificent!
A bakery could not have done as well. And the filling
was key lime, Yummy! Thanks Maria. James eating cake
is on our video camera. I have no clue how to get that on here!






James being a tiger on his tiger!



James and daddy playing guitar
James' first lesson
James on his quad

James on his drums from his birthday
James eating snack and watching T.V.


More T.V. Uh Oh does he watch to much T.V.
However they are mostly educational notice
the pointing!


Another guitar lesson
More T.V. (At least he is into music too!)

James just being cute, he also got in trouble
for getting up on that bench.


My favorite thing to do, sleep and cuddle
my baby.

The struggles of preemie motherhood

Well where to begin! James has been declining so rapidly in the eating world. He has not had much in the solid food category for about a week. When I put food in front of him he gags. I know I am no chef but there is more to it then bad cooking.

I am just so upset, We go to our GI 7/23 who keeps stating the possible need for a feeding tube. But until they get his reflux and such under control I do not feel that is the answer.

They have tested him for every disease and syndrome known to man kind. As well as a bone age study and so far luckily everything has returned negative. I just don't know what to do. They have him on 3 different medicines, Nexium for reflux, Reglan to speed up the stomach mobility and Periactin to increase his appetite (which I see not helping). Our baby's our supposed to pure and innocent and we have to pump them with all of these chemicals (medicines)

James is such a wonderful little boy always happy, and I am so fortunate at how well and how far he has come. So much so that if we did not have this eating issues and weight gain you probably would never no that he was born at 25 weeks.

We also went to the eye doctor again and of course his eyes are still the same, he has Amblyopia and Anisometropia due to stage 3 ROP. He of course does not wear his glasses which is a another struggle everyday, I am not as strict on this although I need to be, but I feel I have to pick my battles, medicines are a challenge now once I catch him I pray that he keeps it down.

Any ways thanks for listening and I hope I did not bore you, this is however great therapy. I know I am not the best writer, But hopefully you stay tuned and give me all the advice you can.

NEUROLOGY OR BUST!

So yesterday we went to our 6 month Neurology visit. I dislike these appointments because of there charts and expectations. Just when you think your 25 week preemie is making such strides they rain on your parade. Here is how some of it went.

James' weight = a 9 month old (20lbs. 1.5 oz)
His height measures in @ a 12 month old (33 inches)
His Alberta infant motor scale since his language skills are still average of a10 month old puts him @ a level of a 19 months old but in actuality his fine and gross motor skills are @ a 21 1/2 month old.

See what I mean throw away the charts, my son was born @ 25 weeks was not expected to survive let alone weighed 1lb 6oz. I think he has come a long way. Then they always contradict themselves by saying that each child develops in there own way!

Any way I am done ranting, thanks for listening.

On the happier side of life, James had a wonderful birthday party, thanks to all my family and friends for sharing this day with us. He received so many toys I think we will have to by the house next door and James can just stay here. He is taking over, my living room now looks like a few isles from toys r us.

Happy 4th of July

Well today was good. James ate pretty well for him. We had to put him on Miralax to help with some recent constipation issues he just started having.

I think it may be due to the new drinks he is now on they are very high in calories and fat plus protein. And of course he does not eat enough fruits or vegetables to help him out.

I have placed a call to our GI to see about maybe giving him some fiber, like Metamucil or similar. Let me know of anything if you struggle with this as well.

We spent the 4th with my brother-in -law and his family. We went swimming and had a barbecue. We live in Arizona so it was a hot one today for sure 116 degrees no kidding! But our winters are worth the heat. Tracy

FOOTBALL

James caught a football today for the very first time. He was palying with daddy and caught it about three times with no FUMBLES!!!! Yeah coordination not an issue.

James Turning TWO 7/7/07

I am still trying to figure this out, HELP!!!!

Well here I am again, not knowing what I am doing. I have just created 2 blog sites. I am so confused. Now if I could only figure out how to let people know about it and can come back to post and check comments.

James is great, turning 2 in 7 days, I can not believe this at all. A true miracle/blessing. Back in the NICU days you never thought about this you just lived for that day never thinking of yesterday or tomorrow. Well at least for me that is how it was. I am going to stop here and try to figure this out some more. I hope to be back soon. Thanks Tracy

History for My New Blog

Hello I am new to the blog world. I hope I can access it again later. Any how, I am Tracy I live in Arizona and am the mom to a 25 week premature baby. He was born 7/7/05 weighing 1lb 6oz and was 121/2 inches long. He spent 4 months in the NICU and came home 11/7/05. I had a rough 2004-2005. My father took ill in October 2004, and passed after long 6 month battle in the hospital of one thing and another. My mother was diagnosed with cancer 1 1/2 prior to that and was undergoing rigorous chemo treatments in California, where I would accompany her, we traveled back in forth to California due to the treatment available for her particular cancer,(Metastatic Melanoma). Well unfortunately on 11/3/05, yes 4 days prior to my little boy coming home she passed away. Oh and in between all of that baby was born 15 weeks early, Hmmmm, could it have been from stress! Well I had PROM(premature rupture of membranes) I however was only 23 weeks when that happened and spent 2 weeks 3 days luckily in the hospital because if baby James would have been born at 23 weeks I probably would not be here blogging about my wonderful miracle boy. He is more than a miracle but I don't know a substitute word. I have other mom's who blog and or have web sites and I enjoy them so much I wanted to join in, Plus I am sure it is great therapy to get your feelings and such out and share with others.

Well James is 18 months and 15 months corrected. He is a happy and very social out going boy. He started walking all on his own 12/4/05 Merry X-mas I say. He is a little peanut weighing a whopping 18.4 pounds. He is 31 1/4 inches tall. He says mama Dada and a few other babbles. Our weeks consist of PT on Mondays, Speech therapy Tuesdays, feeding therapy Wed. and OT on Fridays. Our early Interventionist visits us also on Fridays so Thursdays are our only free days. Well I welcome your comments and will try and post daily. I am not the most computer savvy gal bare with me. I also will try to post a picture if I can figure that out. Thanks Again Tracy.