What will we do......

I'm sitting here wondering what we will do with all of our spare time since our GI doc doesn't want to see Caleigh for the next four weeks. Yippy! Can somebody say stable? Caleigh is still having quite a bit of gas pains and so far that is our only obstacle. The likely culprit is bacterial overgrowth, but we are going to take a few steps to figure out if it really is. First of all, Eric and I stopped giving Caleigh the Reglan (for motility) on Monday. We also stopped the mylicon drops. We felt she didn't need the Reglan anymore because her bowel movements have been really constistent. Plus she would be really irritable after we gave it to her. The mylicon didn't seem to be helping at all and why give a medicine that doesn't work? So the next step is to cut down Caleigh's dose of Imodium. Our doc wants to see if we are slowing things down so much that it is trapping the gas in. We will watch Caleigh's output for the next few days and if her stools become liquid again the we will go back up on the Imodium and start the antibiotic Xifaxin for overgrowth. If we get to that point, we will switch Caleigh's formula from Neocate Infant to Peptamen Junior with Prebio. The thought being that maybe her gas is coming from the formula. Also, Caleigh is one now and needs different nutrition than an infant. This new formula comes pre-mixed in liquid form so it will be a huge time saver for us as long as she can tolerate it.

We also went to do our swallow study on Thursday and it didn't happen. We drove all the way to the hospital to have a speech therapist tell us that we were doing a great job at introducing foods and helping Caleigh get past her oral aversion, but that she can't get enough food down to actually do the contrast study. I could have told them that. Oh well, I think we are going to look into a feeding clinic. Cook's is just starting theirs and Baylor in Dallas is supposed to have a good one. Maybe that's what we will do with that empty GI time slot.

Otherwise things are going well. I've set up appointments with our Feldenkrais practitioner. We will be going twice a week and I'm excited to see how things go. We still have PT and OT coming to the house for therapy. This coming week is pretty quiet as far as doctor's visits go. Only one and that is to our pediatrician to get Caleigh's 1 year shots. Well enjoy a week full of therapies and home time. Happy Labor Day to everyone!

Calling the Milk Man

Eric went to check the mail today and what did he bring back? A shiny new award certificate from the Mother's Milk Bank of North Texas. You may remember that I donated all of my breastmilk to the milk bank back in February. The certificate wanted to congratulate me on the 1616 ounces of breast milk that I donated. Of course that's a lot, but how much you ask? Exactly 12.625 Gallons! Wow, I'm pretty sure my boobs hurt just thinking about it! You go girls...... I was a milk machine for 3 months. 12 Gallons makes all those lonely nights without my baby, at 3am, pumping milk and watching The Fresh Prince of Bel-Air worthwhile. It makes all the time spent away from Caleigh's isolate pumping in the next room rewarding. Because my milk came in premature it had a higher calorie content. My milk went to premature babies. Babies that are like Caleigh. It makes me smile.

MIA

I've been MIA for a few days catching up on emails, writing thank you notes, taking Caleigh to her many appointments. Ah, yes and sleeping too.

The outpouring of caring words and positive reinforcement over the last few days have been amazing. Thank you for that. In the spirit of moving on, Caleigh has been in a great mood. We went to the nephrologist on Monday and Caleigh's blood pressure is good. So we are to keep doing what we are doing. We don't have to go back until February. Knocking one doctor off the list helps. Yesterday we had an amazing OT session where Caleigh laid on her belly pushing up on her arms and holding her head up for a good 10 minutes straight. An all time record. Later that day we went to Caleigh's first Feldenkrais session. She did excellent on the ride over and was still asleep when we got there. The session overall went very well. It was full of meet and greet information along with a few referrals to some other alternative therapies. During the therapy Caleigh made her first 2 syllable sound. She's been a 1 sound baby for so long it was quite a pleasant surprise. She really seemed to connect with the practitioner. I think we will continue to see her and I'm going to look into a few of the therapies she suggested.

Tomorrow we have Caleigh's swallow study followed by a GI appointment on Friday. Busy..Busy.....oh and did I fell to mention that Caleigh is taking 21 ml an hour! Another record for the books.....

Who likes to party....rock the party?

Caleigh loves to party.......at the Emergency Room in the early dawn hours. We had to make a return trip to the ER at 4 this morning. It was a repeat offense.....Broken G-Button. At 3am I went to change Caleigh's diaper and there it was sitting next to her. Of course, Caleigh acted all innocent.  Actually, I don't think it was her, the balloon had a leak. So we patched it up again, loaded her up and off we went. There was a tiny wait and when we finally got to see the ER doctor we convinced her to give us an extra button for the house. HaHaha.....sticking it to the man, or the insurance company as it would be. So now we only have to go to the ER every other time. We made it back home by 6:30 and all of us crashed in bed. I'm soooo tired! We keep thinking things will slow down, but I guess Caleigh has different plans for us.

 

This next week we go see the nephrologist, GI doctor and do Caleigh's swallow study. She has been doing really well with the taste tests. We've tried almost all the stage 1 foods and she seems to like them after the initial gaging. I think she has most of her issues with the spoon and a lot of the time I just use my finger to give her the food. Some sort of sensory issues I'm sure.  

So last week when things didn't go so well on our drive to Tyler to see the Anat Baniel practitioner, I started looking into local Feldenkrais body workers. I found a lady in Dallas and her office is only about 30 minutes from our house. We have our first appointment with her on Tuesday. I have high hopes once again.

Thanks to everyone that commented about our doctors visit. I'll say this.....I was sad, my feelings were hurt. After I finished posting the events and getting the sadness off of my chest.......I got mad. I'll drop the subject and leave it at this.....now we must move on, with all respect.....and prove her completely Wrong. 

Terrible Palsy

I like the title a fellow mom blogger chose for her son's blog, Terrible Palsy

For those not dealing with the term Cerebral Palsy (CP, a broad term for a problem with the central nervous system) it is and can be and will be terrible. I had thoughts in my head all last night about a 'what is Caleigh doing/achieved at 1 year' post. I thought I would type it up tonight, but I was sadly mistaken. Not to worry those thoughts are still in my head, but they have been pushed aside by the turn of events that happened today.

Lets begin with a little history. When Caleigh came home from the NICU in March, I read somewhere that we should go see a developmental pediatrician. That they would be able to help 'see' a baby with special needs a little better than a regular pediatrician. So I found one of the only DP's in the area, we had to apply to get an appointment. It was like a private school application I swear! One month later we found out that we had been 'accepted' to see this doctor and our first appointment was 4 months away. I thought wow, everyone must be taking their kid there. It will be worth the wait.

Flash forward to today, 9am as we sit in front of this new doctor. Now let me interject here......all of our doctor's have been with us since the beginning. They are family, they know how positive we are about Caleigh's situation. They are optimistic as well and know how to talk to us about certain things. We aren't stupid.....we know what 'could' happen. Ok, so you may see where this is going...back at the new doctor's office as we sat in front of her my mind raced. She started out slow asking about the last 4 months of Caleigh's development. What can she do, what can't she do, what is our PT doing with her? Then she did a physical exam. Caleigh hated it of course and screamed the whole time. We sat back down and I got Caleigh calmed down. Then the suggestions started pouring out of her mouth. I know I heard them, but I kept looking down at the woman's necklace. It was large, shiny, almost like silver bangles. Then her dress, it was pretty, green and white something I would have worn 2 years ago. She was wearing a white sweater......... all the while I was listening to the horrible things she was saying about our baby. Why was she being so mean? I took every word that came from her so personally. I know it is her job as a doctor to prepare parents and give her opinion on what the truth is, but jeez. The tears filled my eyes, I'm sure they must have looked glassy. Not a drop fell out. I glanced at Eric and his eyes were the same. I recapped in my head the things she said......Cerebral Palsy, Mental Retardation, splints, prone stander, we needed to get genetic testing done, quadriplegic, Caleigh's head is too small, her IQ is too low and she doesn't expect Caleigh to move any further ahead than what her abilities are right now. We are to come back in 6 months and bring our PT with us so that we can order wheelchairs and adaptable equipment to make our lives easier. Easier? Is she joking? She said that she would give it 6 months but she is pretty sure there won't be any progressions during that time. Every alternative therapy I asked about was shot down. Basically nothing will help. Keep her healthy and I will see you in 6 months....... she walked out the door. Now don't get me wrong she did her job, she seemed really sympathetic, but very matter of fact at the same time. She spent an hour with us.

Eric and I walked out of her office shell shocked. Teary eyed and feeling like we had just been beat we slowly put Caleigh in the car. Each of us hugged her and told her we loved her very much. She cooed and made it into her car seat happily. We drove to the Olive Garden and ate lunch. Our second time in a restaurant with Caleigh. She was exhausted and slept the whole time. We cut our lunch a little short, I told Eric I wanted to leave. I was tired of people staring and the room seemed to be too crowded for my liking. We got back in the car and made our way over to Cook's. We had scheduled our neurology appointment for the same day thinking it would be a good fit, but now we weren't sure we could take anymore. We arrived early hoping we could squeeze in an outpatient bone density scan that we needed to get done but the paperwork wasn't right so we were sent away. We made it to the neuro appointment and waited for an hour to do Caleigh's 4th EEG. We just thought we were beat down at that point! An EEG isn't fun while they put all the probes all over the head. There is scrubbing and pushing and Caleigh just wasn't having it. She was screaming bloody murder. Eric and I were all teary again. Finally, I couldn't take it anymore and picked Caleigh up. The tech lady wasn't too pleased, but it wasn't her kid laying on the table with huge tears rolling down her face either. Finally we started the EEG and Caleigh was able to take a small nap. When it was over we went to our neuro appointment. I love our neurologist. We call him Mr. Rogers. We got there and I told him that we went to see the developmental pedi that morning. He says yeah, she talked to me and she won't be seeing you anymore. Huh? Ok. What? I tried to relay some of what she had told us and he basically let it roll right off his sleeve. Like yeah, whatever. He had good things to say about Caleigh. He was excited about her eating 19ml an hour and only being on TPN 14 hrs a day. He was pleased with her head growth but did say that he wished it would grow more. He was happy with her cooing and trying to hold her head up. Just like a Mr. Rogers would do. He did say that Caleigh seemed a little more tight (spastic) since the last time we saw him. He suggested that we go to the spastic CP clinic that one of the neurologists has. At that time we will see a bunch of specialists and they will decide what Caleigh needs in terms of equipment. We will be doing that in October. As far as seizures go, Caleigh's brain waves have "matured" which is a good thing. There is one area in the back left lobe that still has some spikes to it. The Keppra seems to be doing the trick and so far we are infantile spasm & grand mal seizure free. We left his office feeling better about Caleigh's outcome.

Our day was just plan tiresome. I don't think we plan on going back to the developmental pedi. We have enough doctors appointments as it is and why put ourselves through the agony when we can get positive feedback and suggestions at the neurologist. The power of positive. Why surround Caleigh with negative? Sometimes a dose of unsolicited reality is useless.

New Year... New Blog

Here it is....look around...see anything new? That's right.... new design, new content, new direction. The 2nd year in Caleigh's life looks to be full of surprises and adventure and what better way to celebrate her 2nd year than re-design her blog. Ok, I can think of some other ways to celebrate, but still, this is fun too. I've been working on this forever! I've added some of the blogs and websites that we love to read. There is also a subscribe button to the left. Click on it and you can have Caleigh's blog posts sent where ever you choose. Take a look around and let me know what you think.

Birthday Pictures

I'm pretty sure she is going to hate me for this outfit when she is a teenager!Caleigh with her cousin Avery.

Mom & Pillsbury slaved away over this one for a few hours the night before

Just a few licks (remember were just tasting things)

Caleigh seemed to enjoy the taste test.

Thank you to everyone that made it to Caleigh's first birthday party.
What a milestone for our family.

More coming soon. Caleigh has been really clingy lately and will not let anyone hold her except me. Separation anxiety setting in. It's exhausting! Hopefully, it's just a small phase. So I will update when I can!

Happy Birthday Caleigh

Caleigh's first Birthday was a great day. Of course the day started with a few renditions of Happy Birthday. Caleigh smiled and made my day. We made cookies and took them up to the nurses at the NICU. A little tradition that I think we will continue for many years to come. We owe the NICU and all their staff a huge thank you for all they have done for our family. Plus everyone loves cookies! It's a win... win situation.

Caleigh with her Pawpaw. I get big smiles like this all the time, but can't take a picture while it's happening. I'm so glad she thought his beard tickled. So cute.

Next, we took Caleigh to the FireStation to see the big red trucks for the first time. She was somewhat excited, but I think Eric and I were even more so. It's so nice to be able to do things that at times we thought might never happen.We came home and started getting ready for the big party. I will write more about Caleigh's first year and post party pics as soon as I can. Thanks to everyone that left Caleigh happy birthday wishes!

I've been working on this slideshow since Caleigh was in the hospital. It's not exactly how I want it, but there is always Caleigh's second year to make things perfect. It's long, I warn you. But there was a year of nothing but adorable photos to add. Enjoy!

Make video montages at www.OneTrueMedia.com

It's my party & I'll cry if I want to

This is definitely Caleigh's birthday week and if she wants to cry she will! She has been very clingy not wanting anyone but her mama. I'm pretty sure I have held her the entire week and when I wasn't she was letting her disagreement about the situation be heard. Maybe it's a phase and hopefully she will do well at the birthday party. (Crossing my fingers)

Eric and I loaded Caleigh up, and her large amounts of supplies, and made the trip to Tyler to visit our Anat Baniel practitioner. First of all let me say that I love what she did and showed us to do. I would have someone do the therapy with Caleigh everyday if I could. Now lets talk about Caleigh excitement about the situation. Ummmm.....none. Out of the total 4 hour round trip Caleigh cried, screamed and threw a fit for 2.5 hours of that time. Sweating, breathing hard and giving Eric and I flashbacks to her old seizure days; we were exhausted by the time we got there and so was Caleigh. She was fussy and not so cooperative. On the way home we had to pull over twice to try to console and give Caleigh a break in crying before strapping her back in and enduring more of the uncomfortable situation. Darn that carseat law :-) So it didn't go well and I think Eric and I have decided not to put Caleigh through that again for awhile. I think her top travel time is about 45min. to an hour. I'm really sad that we didn't get to do more and that Eric and I were so worn out that we really couldn't get into it as much as I hoped. On the way home we joked that sending me to California and paying the 30 grand to put me through the school for 2 years would be easier than traveling the 2 hrs again. I'm really disappointed. To bad she isn't closer. Maybe we can try again when Caleigh gets a little older.

Today we went to the GI doctor and it was decided that Caleigh is still gaining too much weight. So she is now only on TPN 16 hours a day. Wow, the freedom! She's taking in 17ml an hour and weighed in at a scale tipping 17lbs. Growing like a weed. We started a round of Flagyl, antibiotic, to try to get rid of some crazy gas pains that Caleigh is having. There might be a little bacterial overgrowth there causing it but she isn't really showing any other signs. We are still doing the Oregano oil and that seems to be helping keep things at bay.

Got to get some sleep, party prep and have a wonderful first birthday with Caleigh tomorrow.

Overdue

Caleigh has really been working on getting her hand to her mouth. It takes a little placement as far as her shoulders go, but once she is in position, Caleigh starts chewing and licking like crazy.

A long overdue update on things in the Gray household. We have been really busy preparing for Caleigh's first birthday. Our house will be full so if your coming be prepared! Brisket is now on the menu. mmmm...Yummy. I just saw the weather forecast and it's supposed to be a cool 93 degrees with a 20% chance of rain. That's really exciting because the past two weeks have been over a hundred.

Caleigh has been doing wonderful lately. She's all the way up to 16ml an hour. Her stools have slowed down to 3 or 4 a day and they really look great. Diaper rash is all gone. Caleigh's belly is the softest it has ever been. She has occasional spells with some pretty bad gas pains, but as soon as they're over she's back to content. Caleigh has been smiling even more each day and we've gotten a few chuckles out of her too. She has been teething something horrible here lately and not sleeping as well. Those naps that I have grown accustom to aren't happening anymore. Hopefully those little buds will pop through soon.Last Friday we made it over to the eye doctor. Caleigh has been crossing her eyes ever since her last surgery and we wanted to see if anything was going on. For those that haven't met Caleigh, her visual issues are apparent when first trying to get her attention. If she doesn't know you or your at a distance she really doesn't make good eye contact. It's almost like she is ignoring you. So the eye doctor watched her cross her eyes and looked at the eyes with a special lens. You don't see with your eyes, you see with your brain. If the brain isn't making that connection to the eyes then the person acts as if they can't see. Nothing is wrong with Caleigh's actual eyes. It's her brain that seems to be the issue so far. Our eye doctor seems to think that when she crosses her eyes, Caleigh is actually looking at the tip of her nose. So she sees something and then as a coping mechanism to process what is going on she crosses her eyes on a focus point, i.e. her nose. He mentioned CVI, which of course we are hoping isn't the case, but at 9 mths corrected I think we have a diagnosis. It just isn't on paper as of yet. We will go back to see him in 4 months unless the crossing gets worse. It seems better since I made our appointment about a month ago. I am hoping with Caleigh's new therapy that focuses on training the brain that her vision will get better.This week's schedule is crazy. Tomorrow we draw labs and have PT come to work with Caleigh. Wed. we go to Tyler for our first Anat Baniel session. I can hardly wait! Thursday we go to the GI doctor and Friday we have OT. Something everyday it seems. Plus pulling everything together for the party.

I have been really, really behind on thank you notes. So behind. I'm working on them...I Promise! This week I'm blaming my procrastination on the Olympics. I just love'em!

Caleigh's Birth Day - Part 2

Rolling off to the operating room was just like you see in the movies......rows of florescent lights flying by at super speed. When we got to the operating room doors they wouldn't let Eric in with me. He had to go put scrubs on and I had to get my epidural. Actually, I think it was a spinal but I couldn't tell you for sure. What I can tell you is how completely horrific the experience was for me. Everyone was in a hurry, hence the emergency c-section thing. The anesthesiologist came to talk (ramble) to me about all the bad things that could happen. He was talking so fast but I just can't forget his 'bad things' speech. "Stroke, heart attack, bad things all bad things. Paralysis, blindness, loss of feeling in your pinky toe, bad things all bad very very bad." Ok great, where do I sign? Signed the paper, leaned over onto a nurses shoulders and they gave me a deadening shot so that I wouldn't feel the 10 foot long needle stab my back. Hmmmm....it didn't work. I about flew off the table, the lady asked me "where are you feeling the pain." Are you kidding me? Right where the needle is stabbing my back! So they gave me another shot to numb the area. Again, it didn't work. I'm crying so hard by this point while trying to stay as still as possible. Remembering the paralysis statement. So another shot was given. Still didn't work and this time when they pushed the needle in further my right leg kicked. Yep, kicked....on it's own.... You know that feeling when you hit your 'funny' bone, that tingly hurt. That's exactly what I felt running down the right side of my body. At this point I am yelling at the lady to stop, please stop. All the "Bad Things" that the lovely anesthesiologist mentioned earlier went rushing through my head. And then they were done, I felt everything, but they were done, and I was numb from my chest down. I see Dr. Papa, she tells me everything is going to be ok. Eric comes into the room and they got started. It happened very fast, the whole time a nurse is pumping me with medicines. I started having anxiety and it was hard for me to breathe. An oxygen mask was waved in front of my head. And then we heard it.....at 2:25pm, August 15th, two cries, just two, but the most beautiful cries you have ever heard. Strong cries. By the way, the crying never stopped for me and it just became a river after I heard those cries. I asked "What is it" Girl or Boy? I heard someone say we didn't even look and then another person across the room said "It's a Girl." A Girl, Caleigh Amelia Gray. Eric and I just looked at each other and smiled. He went over to see about her, but there was too much going on to see. He came back over to me reporting that she was beautiful. Of course she was! They quickly rolled our newly born daughter by my head, stopped for 2 seconds and then took her over to the NICU. My delivery wasn't complete. Due to my placenta developing an accessory lobe during pregnancy, it was a little more difficult to get it all out. There was a lot of pressure on my chest, A Lot. Finally they got it out. Eric went to be with Caleigh. They rolled me to recovery where family started coming in to visit. Along with family, was our surgeon Dr. Vaughan which at this point we completely consider this man our family, a true angel. He came to talk to me about Caleigh's first surgery. I don't remember the details and the next few hours we're a fuzzy blur. All but the need to see my daughter. I remember fighting sleep, not wanting pain meds because it would make me sleep. I convinced my nurse not to wait on the morphine pump to come up from the pharmacy before she took me down to the NICU to see Caleigh. "Are you sure?" Uh yeah! So I was rolled down to the NICU (aka home away from home) right outside 4A where I waited and waited and waited......morphine was looking pretty good right about now......but I had to see Caleigh before her surgery. Finally they rolled her out to see me on their way to Cook's. She was beautiful and so so tiny (2lbs 2 oz. to be exact). My heart literally melted right then and there. She looked so fragile, the nurse asked if I wanted to touch her. That's when this famous photo was taken. The very first time I touched my daughter's hand. It was brief and dream like. She was rolled away, I was rolled the other way back to recovery and then back to my room on the third floor. The floor where they keep the women without their babies. Eric went to the surgery waiting area at Cook's. He came back with tells of Caleigh's strength and beauty. Eric was beaming...he was a daddy for the first time. No matter the circumstances you can't change that. As soon as I knew Caleigh was ok and out of surgery, I gave in and let the medicine take over. I slept on and off. I was told that I had to lay flat for 12 hours before I could get up. So at 2am I called our nurse to help us go down to the NICU. I honestly don't remember a lot about that visit. I just knew that I needed to see my baby and I had to wait 12 hrs to do that. We took this photo and that's all I can recall. Darn drugs... The next few days were filled with more surgeries for Caleigh and more worry for us. I eventually had to say no to the pain meds because I just couldn't function and I wanted to be more coherent for the doctors that I was talking to. For the first week after having Caleigh, I would cry everyday wanting her back in my stomach. I missed her being there. I was supposed to keep her safe inside me but instead she was taken from me to soon. It was and still is devastating. The day came that I was discharged from the hospital. Eric and I cried the whole day. We went to see Caleigh that morning, and after we loaded the car we went back in to see her again. We went home and later that night we went to see her once more. Leaving Caleigh at the hospital that day was the hardest thing we have ever had to do.

So there you have it, Caleigh's Birth Story, the week long version. The rest is history and conveniently located in the archives section of this blog starting with day one.

Caleigh's Birth Day - Part 1

In honor of Caleigh's first year, I wanted to recount her birth day detail by detail. Scrapblog as it may be. This is long, so bare with me.

I remember it like it was yesterday, and sometimes it feels just like yesterday. So here I am 28 weeks and 2 days pregnant, Aug. 12, 2007. On our way out the door to go to lamaze class. Yep, lamaze......looking back, that did us a lot of good! On Tuesday, August 14th, Eric and I went to our routine doctors appointment. I was going in to get a bio-physical of the baby and also get tested for gestational diabetes. That morning I had drank the crazy hawaiian punch sugar drink that you have to down before the test, hadn't ate anything and only had a little bit of water. This doesn't make for a happy pregnant lady and I was looking forward to a nice lunch after our appointment. We only waited for a couple of minutes in the waiting room, the doctor's office was unusually bare for a Tuesday morning. We got in did the whole urine sample, blood pressure, temperature thing and then made it to our room to wait on the ultrasound tech. Once she came in and got everything set up, Dr. Papa stuck her head in to say hi and told us that she would be back in a sec. There it was....the moment that would change everything..... the second the wand touched my stomach and I looked at the screen. I knew something was wrong. I asked "what is that?, that hasn't been there before, the intestines are dilated aren't they? The tech confirmed it. She went to get Dr. Papa, when she got in and looked at the ultrasound she said the same thing and wanted to start some fetal monitoring in the office. Eric and I just looked at each other, confused and worried. What was happening? Dr. Papa quickly went off to her office to call our surgeon and fill them in on the situation. She wanted their opinion on what to do and of course they wanted to keep the baby in as long as possible. In the meantime, the nurse came in wanting to take my blood for the diabetes test. 4 sticks later, lots of bruising & pain and no blood.....I was about to crawl out of the chair and strangle the poor girl. They took me to a monitoring room where I got all hooked up and settled in a chair listening to the baby's heart rate. Only problem was that we kept picking up my heart rate and I had to lay in the most uncomfortable position for about 30 minutes. After that time it was decided that I needed the first in a series of steroid shots to help the baby's lungs develop 'just in case' we needed to deliver soon. In the back of my mind, at this point, was complete worry. I had heard of these rare cases of Gastroschisis where all the baby's intestines die inside the womb and have to be removed. That couldn't be happening to us. The front we put on was complete denial. Joking, laughing.... the usual Holly & Eric commentary during a tough situation. Our appointment was at 11am that day and we didn't make it out of the office until 1:30pm. Yeah, we made it out, but with strict instructions on what to do and where to go. Get some lunch, go home, pack a bag ......what a minute...PACK A BAG, I didn't have a bag.....I was 28 weeks pregnant! And finally....check into the hospital by 4pm that afternoon. When Eric and I left Dr. Papa's office that day there was a lot of silence. We didn't have to laugh and joke between the two of us. We knew what was really going on......and it wasn't good. When we made it home there was a lot of walking in circles, what to bring? how long will we be there? why was this happening? I guess I was hoping it was all a mistake and we would be sent home. On the way to the hospital I made Eric stop at Target and we bought a new camera because our old one was acting up. I wasn't going to have our baby without a camera. Most of the pictures you have grown to love on this blog were taken with that very camera. So when we got to the floor they showed us to our room. Things are a bit blurry at this point. Everyone was asking a lot of questions, I had to get another steroid shot and I was hooked up to the fetal monitor again. Same scenario, my heart rate and not the baby's. Dr. Papa came by and broke the news that we would probably be having the baby by the "end of the week." Ok (denial, denial, denial) we thought, it's Tuesday...... so we will have the baby on Sunday. No problem, that would make things better. That night the nurses were great and very supportive. I didn't really sleep and there were a few more steroid shots to get throughout the night. By morning Dr. Papa came by and said that things looked ok and we wouldn't be having the baby that day. So Eric and I called our family. Told them to go to work, no need to come over......we'll be here awhile. The nurse came in about 10am and gathered the paper from the fetal monitor machine. It was a very large pile of paper and she said that she would just fax it over to Dr. Papa. The nurse came back in and said that Dr. Papa would be there in 10 minutes. Why? She was just there? Apparently, she didn't like what she saw on the monitoring and she wanted to do an ultrasound. It seemed like 2 minutes later and there we were, in a room, on the floor with the ultrasound machine & Dr. Papa looking at our baby on the screen. She told us that the baby really wasn't moving much anymore and that she needed to deliver. We would be going for an emergency c-section as soon as an operating room was open (AKA 1 Hour). I remember asking her if a vaginal birth was out of the question. I really wanted that experience and I guess it was a last ditch effort on my part. Silly. We walked back across the hall to our room. We were in shock. Eric and I just held each other and cried. I will never forget that moment as long as I live. It was so powerful. The emotions. ugh. Thoughts raced through my head about what could happen, would happen. I knew we would be having the baby early maybe 34 weeks or later. I just didn't think we would have to deal with prematurity on top of Gastroschisis. Coming up for a visit, my brother walked in on the red faced, teared up scene. Poor guy. We asked him to call our parents and as far as I know he did a great job. It seemed like no time at all and tons of family and friends were in our room. We said our goodbyes and just like that I was rolled down to the operating room......

to be continued.......

Anat Baniel Method

Ok, here it is.....the information on the therapy Eric & I have decided to try for Caleigh.

For a full understanding of the Anat Baniel Method based off of Feldenkrais you can follow the links.

You may have to wait a bit for the video to load, but this little girl is very similar to Caleigh's situation. She is 15 mths old, PVL and her left side is very spastic. She also can not roll over.

Here's the general idea.......

Often, when a body isn't functioning at the highest rate, the problem is caused by a lack of communication between the brain's nervous system which governs the body's movements and the muscles that actually move the body's limbs. In other words, the brain might not know how to make proper use of those muscles. The connection just isn't there.

The aim of the Anat Baniel Method is to make the connection between the brain and the muscles, helping the body get to know itself, thereby enabling it to take proper advantage of all of its muscles.

Unlike most therapies, ABM is not a goal based system. These therapists will not allow a child to learn to stand before they can crawl, for example. The only goal is to get the body to figure itself out, step by step without skipping, always at its own pace. Just like a newborn would do.

Do a quick search of the website and the internet and you will find that ABM has worked miraculously for some very desperate cases. What you might not find is that although it has made miracles for some it has simply not worked at all for others. Generally you will know if it is working within the first 3-5 sessions. Either way, we have decided to give it a try.

Our job as Caleigh's parents is to attempt everything possible to help her achieve to her highest ability. If this particular therapy doesn't work for Caleigh then we will move on to the next one. Which we already have a few others of interest, i.e Craniosacral Therapy.

The Anat Baniel Center is located in California and just out of our reach at this point. Our first appointment is next Wednesday in Tyler, the only place in Texas that offers this type of therapy. We will be going twice a week for therapy. In September a practitioner from California, who has been doing ABM for 30yrs, will be coming to Tyler and we already have appointments scheduled with her for an intensive week.

So I've called, tried, fought and lost the possibility for our insurance to cover ABM or any other alternative therapy. 'Alternative' = no coverage.

Here lies our problem. Eric and I have made it to a point in Caleigh's journey that we just can't do it on our own financially. Even though it can be a pain, our insurance coverage is amazing and we are fortunate to have it. We are also truly blessed to have MDCP Medicaid for Caleigh's health coverage. On top of that, there have been so many generous people & groups of people that have come together to help us. Those generous individuals have made the financial past year manageable. Eric and I are not the type of people to ask for help. I'm sure most of you have figured that out by now. We are usually on the giving end. Receiving is hard for us. Plain and simple. Even though it is difficult for us; we are beyond appreciative when it comes to the generosity that our family has received. The human heart is amazing and sometimes it takes a shift in every day life for one to realize that.

Our realization as we near her first birthday is that Caleigh's needs will be something that takes time and we need to be able to provide her with every opportunity we can. With all of that said, Eric and I have decided to start a fund for Caleigh. We have set up a bank account for Caleigh's medical and therapeutic needs that aren't covered by our insurance or Medicaid.

I'm working on a link where you can make a donation through paypal. It will be located on the sidebar of this page. Eric & I truly appreciate all of your thoughts & prayers, encouraging words & love for Our Family.

Shiny New Button

This morning we successfully achieved a traditional short gut milestone. At 5am we got up to give Caleigh her medicine. I changed her diaper and then went to put her on her side and felt something funny....something not there....

Caleigh's G-button was out of her stomach and hanging down by her diaper. Nice. The balloon had busted and there was no fixing it. So the only thing to do is make a trip to the ER to get another one. I think Eric and I handled the situation with ease. We didn't rush, didn't freak out. This was nothing compared to what we have dealt with and we both laughed about the whole thing. Put the broken button back in the hole, covered it with 4x4's and tape and off we went. So at 6 this morning we visited Cook's, got a new button and made it home by 8. Shortest hospital visit in Caleigh's history. Maybe this is a new trend?

I had just been talking to our insurance case manager about letting us have another button at home so that we had one 'just in case.' We have already met our maxium coverage on durable medical equipment so they won't let us have another one. Our new Medicaid coverage only covers a button once every six months and the one that broke was that 'one.' The only option is to go to the ER and have the insurance pay for a Mic-Key Button and ER visit as an outpatient thing. Stupid, I know. Working our way around the system I guess.