9.30.2008

Progress

The definition of progress is a movement toward a goal or to a further or higher stage. That is exactly what we have been working towards for the last 3 months since Caleigh's STEP procedure. This past weekend Caleigh jumped a huge hurdle by tolerating bolus feedings throughout the day.
On Saturday, I started by giving Caleigh 60ml over 30 minutes on the feeding pump, every 2 hrs. We did the same thing on Sunday. She did so well, even acting hungry right before feeding times. We offered baby food before bolus feeds and Caleigh ate the standard 1 tablespoon which isn't any different than what she usually does. We have been told that this is a great amount for a baby that hasn't eaten by mouth all her life. It's a challenge and takes about 20 minutes to give her that amount. She chews and swallows just like you and I.So on Monday we decided to up the anti a bit. Caleigh now gets 90ml every 3 hrs over 30 minutes. She does that 5 times during the day and then we hook her up for 10 hours of 33ml per hour continuous feeds. There are only so many ways that we can say how well Caleigh has done with this. It's just amazing!I love being able to hop up off the couch to get something out of the kitchen and not having to worry about dragging a backpack or IV pole along. It sounds convenient, yes, but until you've done it on a daily basis......well, you know.

Today we took Caleigh to our Network Care Chiropractor. We all needed work done. When I loaded Caleigh in the car....I stopped and thought....she looks like a normal baby. No tubes, no wires, no backpacks attached. Normal. No one would know. It was marvelous.So the next step in Caleigh's quest towards progress will be to increase her formula's calorie content. We will keep her at her current path for awhile to make sure things are moving forward.

I've been working on getting some of Caleigh's clothes and stuff together for a consignment sale called Just Between Friends. It's a huge franchise company so there might be one close to you too. I don't know if I'll have everything ready in time for the sale. I thought I could do it, but Caleigh's had lots of appointments and been in the 'hold me' mood lately. Plus, I'm pretty sure that I've turned into a procrastinator at some point. I should be working on it now but instead I'm blogging so we'll see if it happens.....

9.27.2008

First Bolus

This may be a little pre-term to be celebrating. We started the bolus schedule this morning and Caleigh is doing an amazing job so far! She just took 2 ounces over 30 minutes. It's so liberating to be able to pick Caleigh up and move around the house without grabbing a backpack or IV pole to drag behind us. I Love It!

9.26.2008

What's the plan?

Caleigh's life till now has been full of plans. 'Plans' that she breaks, disorganizes and then basically ends up doing everything her way on her own time. This leaves all of us in amazement on a daily basis but Caleigh's perseverance and her way seems to be working so far.

We finally made it in to see the genetics doctor. When Caleigh was first in the NICU she had a chromosome test ordered and everything came back fine. So there wasn't much for the doctor to order at this point. Apparently there is a new chromosome test that measures very subtle changes in the genetic workings. Our doc didn't like the lab that the test has to be sent to so we are going to wait a year or more before we get that test done. Although, no one knows what causes Gastroschisis, genetics may or may not be the culprit. We've always been told that environmental factors are the cause. This means 'I don't know' in doctor's terms. The doc said that she is almost certain that there isn't anything genetic at all going on with Caleigh. We could have told her that, but I guess we needed a medical doctor to confirm. Caleigh's situation is the result of several unfortunate events during pregnancy and surgeries. Of course, those unfortunate events gave us the Caleigh that we love and adore today! So the plan is to wait and do the special chromosome test at a later date. We are supposed to see the genetics doctor in a year for a check up.

Helmet Head? You know the hair style you get when wearing a helmet for a long time. We took Caleigh to the cranial band evaluation appointment yesterday. And it looks like if we decide to go ahead with the band that Caleigh could have helmet hair for about 4 months! Actually, I don't think it messes up your hair, but you get the point. We went to Cranial Technologies, it is about an hour from our house. They think that they can help the flat side of Caleigh's head. This is called Plagiocephaly. Each band is about 3 grand. So now the plan is to hold our breath and wait for approval through our insurance company.

Ok, now to our GI Appointment.....Drum roll please.........
We had a great visit with our GI doc. Caleigh is doing so amazing. Gaining weight like crazy. Maybe a little too crazy. She's doing really good with taking baby food. Her formula is up to 30ml an hour. So here's the PLAN....
Start trying to bolus feed during the day! At first we are going to do 2 ounces over 30 minutes every 2 hours. This is about 5 bolus feeds a day and then at night we will do the regular continuous feeds. If she tolerates this then a few days later we will go up to 3 ounces every 3 hours. She would be eating on a normal schedule! Plus right before we give the bolus of formula we are going to try giving baby food. Trying to get Caleigh to recognize that she is hungry and that baby food is good before filling her belly with formula. Next week if all is good we will also go down on TPN time. Probably to 8 hrs a day. Bolus feeds are a huge step and we are really excited to be at the point to try it. Our GI doc gave us a referral to Baylor's feeding clinic. We already have speech therapy in our home twice a week so I need to find out what they offer that is better than that. So that's the feeding plan. We are praying that Caleigh can tolerate the volume of formula. I guess we will find out in a few days....

When we were at the GI doc, we all started reminiscing the day that we met. Eric was at work that day. Caleigh was in 3B, in a back corner by the window. The girl needed a corner with all the stuff she had! I came in that fateful morning and Caleigh's belly was huge. Absolutely enormous. She was sick, very very sick. I didn't even pick her up that day because it would have hurt her to much. I just sat by her crib, holding her little hand and talking to her. It was the same day that a little baby in 3A lost it's struggle against prematurity. It was a low day in our journey nonetheless. Our 'now' GI Doc was on call that week. He walked in made his introductions and I could just tell by the look on his face that he was really worried. Everyone was thinking another obstruction....another surgery. He went to look at Caleigh's x-rays. He said it was one of the worst x-rays he had seen. They looked crazy, you couldn't even tell what was going on. He kept talking about how big her belly was. It baffled him. Caleigh made it through that day just like all the others and left a definite imprint in his mind. Yesterday, he kept saying just how far Caleigh has come since then. How good she looks, and what an amazing journey she has traveled. He left us saying "God is good."

9.22.2008

A Day in the Life

I've been wanting to do a day in the life of Caleigh for some time now. I finally got inspiration from Ellie's parents when they blogged about Feeding Gut Girl.

Back when Caleigh was getting over 24 doses of medicines a day I didn't even have time to think about journaling our day. We barely made it day by day and just keeping Caleigh's schedule back then was good enough. Now that things are going so well and have calmed down a bit I have time to breathe and think about what we really do on a daily basis.

It all starts at 6:30 or 7:00am, Caleigh wakes up. We get up, turn off the Apnea Monitor, change her diaper (that inevitably leaked everywhere), proceed to change all the bed sheets and strip her down to her new fresh diaper. We give Caleigh's seizure med, Keppra, & Ursodiol, liver med, through her g-button about 7:30.

Caleigh plays on the floor while we work on waking up, coffee or green tea is a must at this point.

8:30am, it's time to unhook Caleigh's TPN. We glove up and flush her central line with saline and then push about 2cc of heparin to keep her line open and clot free. We weigh Caleigh every morning at this time to. (This morning she weighed 19lbs. 9oz.) Then we get her dressed so that she doesn't mess with her lines.

At 9am we turn off her Feeding Pump and wait an hour for her blood sugar to drop enough to try feeding her baby food. This is new for us this week. After we feed her what she will take, we will replace the 'missed' formula by giving a bolus, or slow push of what was missed. We also hook back up the feeding pump for the remainder of the day.


Somewhere around 10 or 11 we mix up 24 hrs worth of formula. This is about 23 ounces right now.

From 11am to 2pm we are free to do whatever. This time is filled in with our appointments. Caleigh's nap times are still whenever she wants them. Most of the time around 11am and then around 1pm, but it completely depends on the day.

At 2pm we give Caleigh Ursodiol (helps her liver) and 3 drops of Oregano Oil through her g-button.

From 2pm to 6:30pm we are free for more appointments and naps as needed. I think we might try turning off the feeding pump and doing baby food during this time as well.

At 6:30pm Caleigh is ready for her bath. We unhook her feeding tube, fill up the tub and put a naked, playful Caleigh in the water. I've been asked a lot lately about the water. We don't fill the tub up too full because we can't get her central line wet at all. About to her ears. No dunking the baby! I love the new bath mat I bought. It soaks up the water so it is warm on her back, but it doesn't let her slide around.

After the bath, we wrap Caleigh's apnea belt around her chest. Get her all lotioned up and put her pj's on. At the same time we prime a new feeding tube with fresh formula and then hook up the feeding pump again. Then we are off to bed for bedtime stories and some cuddling. (The past few days Caleigh is out before I can even read a sentence to her) We give her 2nd dose of Keppra for the day. As soon as she is asleep, the clean up begins. I start with the bathroom and then move on to her room where I weigh all of the day's diapers and record each one. This is called I's & O's (Intake/Output). I fax them to our GI every Tuesday.

About 7:45pm we get Caleigh's TPN out of her fridge to warm up to room temp. At 8:15pm we start mixing Caleigh's TPN. Eric and I take turns doing this. There is about 6 things that we have to add to the pre-made bags. We prime all the tubing and then clean Caleigh's hub/cap with betadine and alcohol. We hook her back up at 8:30 for her 12 hour infusion.

Eric and I prep for the next day. At 10 we add enough formula for the rest of the night and put an ice pack with the formula bag. Caleigh gets ursodiol and Omega 3 DHA at 10. We also give Culterelle in her formula at this time. We finally make it to bed somewhere between 11 & 12. Caleigh might wake up for a diaper change around 2ish but lately she has been sleeping through the night.

At 7am we start all over again. Rinse & Repeat.

9.19.2008

Mommy went to the Spa!

And got her hair done!

I haven't had my hair done in over 4 months. Unacceptable. Really.

Here's the before.....Here's the after.....
A bit dramatic. Inspired by the changing seasons, I guess. Maybe laying around in my pj's all day took it's toll on me. Maybe I just needed something new and different. I like it.

I made it home just in time to help with Caleigh's bath and put her down to bed. Such a sleepy little angel.

9.18.2008

Grateful

What have I been complaining about exactly? Tired, wornout.......sleepy.

Enough of that. I should be thankful for all that makes my body tired. The 8 therapy appointments a week, the added doctors visits & labs every Tuesday.........

If Caleigh wasn't such a miracle and if we weren't so blessed to have been made her parents then I wouldn't get to kiss her chubby cheeks every morning and enjoy all the little steps that we have been able to share with her.

So with that said, I'm going to suck it up and not whine as much. Ok, try not to whine.

On to Caleigh......

She's achieved a few milestones in the last week. First of all, Caleigh can now get back on her back from her side. So if she is laying on her side, almost on her tummy she can turn herself over onto her back. We clap and say YEA! Then she smiles and kicks her legs. Pretty much anytime we clap and give her positive reinforcement she smiles and kicks. It's so cute! Caleigh has been all smiles lately. It's so nice to see her happy because for so long we would work so hard to get at least a content look on her face. Smiles are now Golden in our house. Caleigh is also turning her head to the left a lot more than she has previously. Her head is always looking to the right side and her head has even became flat on that side because of the position. Ever since we started seeing the Network Care Chiropractor, Caleigh has been turning her head with ease. We have an appointment set up to get an evaluation for a cranial band to help re-shape her head, but I want to learn more about it first. Caleigh's hands have also become more relaxed and open easier. We are beaming and proud of all the subtle things that keep popping up each week.


Yesterday, Eric was working and I decided to take Caleigh down to the park to break in the new stroller. I loaded her up in the car, packed all her accessories and took off. This is the first time that I have taken Caleigh out in the car by myself. It was a huge step! She did great. We sang kid's songs and made it the couple of miles down the road to the park. I decided on a particular park close to the house. In the morning, some firefighters from a station close by come and do their morning workout. It makes me feel better to know that they are there if anything should happen. Peace of mind. So we took off walking and jogging. We did that for about an hour and then rapped it up and headed home. As soon as we got home I laid Caleigh down for a nap and she slept a good hour and a half. It was a very successful time out and it made me feel so normal for that short time.

Thankful for our blessings and Optimistically Positive.......

9.16.2008

Rut

I've been in a bit of a blogging rut ever since Caleigh had her episode last week. I'm pretty sure everything is catching up with me as far as appointments, therapy searching and researching like crazy. Plus, Caleigh's congestion turned out to be allergies and really hasn't gone away. So a fussy baby mixed with lots of 'To Dos' makes for a tired momma. Just this week alone we have 11 appointments. Our calendar looks like something a business person would have!

Caleigh has acted like nothing happened last week. We did get a nebulizer for the house and we have given 2 breathing treatments. Like I said above, we've decided that her drainage is from allergies so there really isn't any need for the Neb treatments. We'll keep it on hand for a 'just in case' moment later in the winter.

Caleigh got her One year vaccines & check up on Monday. We've been about a month behind on all of her vaccines because of all the hospital stays. The developmental paperwork wasn't the best but the nurse was really nice and made it painless. Caleigh did well. No matter how many times you see your little one get stuck with a needle, it still isn't easy to watch.

We bought Caleigh a new stroller. It's a BOB jogging stroller, and I'm in love with it. I'm hoping to get out there and run more now that the weather is getting really nice. I'll post pics soon.

We took Caleigh to A Child Can Do All Things on Friday for an evaluation. I think we might try this therapy, but possibly on a private basis instead of class based. I still need to ask some more questions and talk price for these private lessons. I'm so overwhelmed with all of our therapy appointments it's hard for me to add one more right now. We'll see.

We added speech therapy this week. Caleigh will have that twice a week from now on. We still have OT & PT. I'm working on vision therapy too. We go once or twice a week to our Feldenkrais practitioner and to the new network care chiropractor as well.

It feels like so much has been going on, but at the moment I'm to tired to even think about it all. I'll try to fill in the gaps soon. Hopefully, it won't be as long of a stretch between posts.

9.11.2008

Blue

I swear Caleigh has set out to age me quickly. At least 20 yrs have been knocked off my life since her birth. She used up all of her worry points very early on. Although she smiles when I mention this; she still aims to panic me daily. My head is full of grey hair and I can point out which ones are from Caleigh and which ones are from Eric.....

Today, Caleigh decided to scare me to death once again. Eric had the day off from work and he was on his way to Corsicana for a firefighter's funeral. Caleigh had been coughing and sickie yesterday and last night. I expected to spend the day holding and comforting our little darling all day. She was very fussy. So I was bouncing Caleigh upside down with her draped across my legs, belly hanging between them. This is her absolute favorite position in the whole wide world. I think it makes her tummy feel better to hang. Ok, so back to the bouncing..... I noticed that Caleigh was getting very relaxed...maybe a little too relaxed. Then I started watching her breathing. It was very shallow. VERY Shallow! I quickly picked her up off my legs and the first thing I saw was BLUE. Our baby girl was once again blue. Her eyes rolled back in her head as I was bringing her up. Caleigh's whole body was limp. I started doing a sternum rub and yelling at her. She was still breathing, but barely. I gave her two quick breathes in her mouth. I didn't even lay her down, so I'm not sure what good it did. As soon as I did that and continued to rub her chest; Caleigh's color began to look better. I had a quick thought about NOT having oxygen here at home with us. When she started coming to a little bit more, I picked up the phone and called 911. I started talking to the dispatcher, telling her what was going on. I was tapping Caleigh's back and I eventually told the lady to cancel the firetruck and ambulance because she was fine by then. She told me some story about her son being a preemie. It was a nice story and I know she was trying to help, but I wasn't in the mood. I hung up the phone after telling her thank you. I immediately called Eric. He had just arrived in Corsicana. I told him to stay and go to the funeral, that Caleigh was ok. So I got on the phone with our pulmonologist. It took me an hour to get his nurse on the phone....he wasn't in the office. I wanted breathing treatments ordered, but she wasn't going to order anything without talking to him first. He isn't in until tomorrow morning. So I will be waiting for that phone call. I gave up on them and called our pediatrician. Since we had just been there yesterday they told me to give Caleigh some benadryl to help dry up her drainage.
After going through the events over and over in my head, I have decided that the pressure from her chest laying & pushing on my leg, mixed with her sinus drainage caused the apnea episode. I thought we were done with this. Seriously? We gave back all the oxygen! I had nothing. I felt completely unprepared and helpless. I wasn't wearing a bra, the house was a wreck.......I was a wreck. I wasn't ready for something terrible, but I guess no one really is. How could this have happened again! Not long after, Caleigh started smiling and babbling like she always does. Funny to her......definitely not funny to her grey haired mommy! I didn't let Caleigh out of my site all day long. We didn't 'do' Caleigh's favorite position anymore and I am thankful that we have the apnea monitor for her to wear at night. I keep checking on her and I'm pretty sure we won't sleep great tonight. Obviously, Caleigh has something going on sick wise. I really wish she would show us in a different way! The benadryl seemed to help with her coughing. We are going to continue that and the antibiotic and see what happens. I just can't get over how lucky we are. There have been so many 'What If' times in Caleigh's life. What if I wasn't paying attention? What if she was asleep in her crib? What if I didn't get to her in time? God watches over us during those 'what if' moments.

This little incident made me officially start the Gray Family RSV/Flu Season Quarantine & Hibernation 2008. Why you ask? Because today Caleigh shaved another 5 good years off my life and I'm not sure I can take anymore. Plus, calling 911 twice in one year is plenty. Sorry to those of you hoping to visit before the cut off, which was the beginning of October anyways. We'll be free to visit again around the end of April 2009!

9.10.2008

Network Care (take 2)

Tuesday came and we loaded Caleigh up for our Network Spinal Care appointment. Let me just say, we were a bit disappointed with the entertainment value that the new Doctor provided! No dramatics, no crazies, no 'dolphin' like waves! I even asked the new doc about the other Chiropractor's dramatic techniques. She told us "yeah some still do that, but I'm trying to distance myself from that" She kinda rolled her eyes a bit. So things were calm and normal during the appointment. She uses a hybrid approach of Network Care, Cranial Work, & Regular Chiropractics. Caleigh seemed to like her. There was NO crying to "release" whatever it was that needed releasing. The overall experience was much more pleasant for Caleigh and for us. She used a combo of Chiropractics and Network Care on me and it felt nice. My back felt so much better after seeing her. Eric didn't really have any back pain going in, but he said that he liked what she did. He didn't have that crazy look on his face, 'like where did you bring me?' She did say that Caleigh's back and My back were holding stress in the same areas. Some would say that Caleigh is carrying my stress or vice versa. She was very informative. She showed us some new things to do and was generally a nice person. Her prices are much more affordable and I think we are going to buy a package of 10 sessions to see how things go. So I guess we will add that to our list of appointments. She also suggested that we look into Chiropractic Neurology. It's on my to do list!

Today, I woke up to a very very congested & coughing Little Miss Caleigh. I was worried that whatever she has could turn into an infection so I called and got an appointment with our Pedi. We got in this afternoon. Good news is that Caleigh's ears look great. No ear infections. She did find quite a bit of thick drainage down the back of Caleigh's throat. So she gave us a script for amoxycillin. We're only going to use it for a minimum of 7 days 'cause the longer she's on it the more bacteria it will produce in her gut. Double edge sword of sorts. Checking in with our doc made us feel better and as long as we keep the fevers away we are good to go.

Thanks to everyone that voted for Caleigh. We can feel the love. And don't you feel super ready to get out there and vote in November with this little warm up? I know, I do! This little darling won the 5 Minutes for Special Needs photo contest. Isn't she just the cutest? You can read all about Gabi here.

5 Minutes for Special Needs

Today we hit a huge TPN milestone. Caleigh is now only on TPN 12 hrs a day. We have slowly been dropping the rate along with hours ever since she came home in July. A pleasant surprise was the bags that her TPN comes in. For the first time in forever, Caleigh's TPN bags are 500ml instead of 1000ml. This makes for a lighter load for sure! We are at 25ml of formula a hour and expect to be around full feeds by the end of October. We can't wait!

To Caleigh: From Mommy:
Tonight when I laid you in your bed you wanted me to hold you. As you laid on my chest thoughts rushed through my mind of everything that 'needed' to get done. I wished you would go to sleep so that I could get to those things. Then you looked at me, babbled a few times, and then slowly fell asleep. As I held you on my chest, I breathed in your sweet smell, rubbed your back and relaxed. Why on earth would I want to do anything but hold my sweet sleeping baby? The daily chores, hustle and bustle always seem to get in the way. Taking you for granted, all those precious moments that once upon a time seemed so far out of reach. I'm so truly blessed to have those moments. I will never forget the feeling of my sweet baby girl all curled up on my chest sleeping so peacefully. Never.

9.06.2008

Network Spinal Care

Let me just tell you that laughter is definitely the best medicine!

Eric, Caleigh and I went to a Network Spinal Care doctor the other day. Our Feldenkrais practitioner suggested we try another therapy to compliment hers. She suggested Homeopathy, BodyTalk or Network Care. Her thought is that our bodies are holding in all the stress of the past year and a half. If we don't get rid of the stress then it will be difficult for Caleigh to move forward past her pain and trauma. Any tension that Eric and I are holding in will be transferred to Caleigh and she feels that from us. I'm stressed, I know, so it made some sense to me and anything that is relaxing at this point is worth a try. After reading about all of them we decided to give Network Care a try. It is done by Chiropractors and seemed to be the most 'medical' of them all. Here's a brief summary.....gentle touches along the spine that help release the tension. It uses your bodies own energy to heal itself. You can look at the associations website, but let me tell you, it can't explain what happens and what you see.

So let me try to make the long story short. I called the doctor two days before. He tried to explain the process. He let me also talk to his partner, a woman, that is supposed to be great with children. I told them about Caleigh's history and we made the appointment. Flash forward to Thursday as we walked into their office....There wasn't anyone in the waiting room but as I looked around there was a row of shoes along the wall. There was some calming India type of music and a room in the back with glass french doors. The doctor came out of that room to talk to us. Behind him a business man in a nice suit came out and began putting his shoes on. A little bit later an older gentleman with a cane came out too. So we started talking to the doctor, he was a little socially awkward but who isn't in healing alternative medicine, right? We filled out some forms and while we did this a younger woman in her 20's with two little girls came in. I'm guessing she was their nanny. She went back into the room. Another woman with a limp came in and she went back as well. The doctor came to get us because he wanted us to 'see' what he does and what happens when he does 'it.' So we went back to the room. The back wall was floor to ceiling windows and all you could see was trees. It was beautiful really. The room was full of massage type tables all lined up. We sat on a table right next to one of the little girls. She was probably about 6 yrs old and laying face down on her belly. The doctor explained that after a series of 'gentle touches' that we will see the little girl take a deep breath and then her body will start to make a 'wave' motion. Eric and I glanced at each other and then he began his touches on this girl. He would draw his arm up high in the air and then come in and make a tiny touch and then step away. It was funny. I had to control my laughter. He repeated this several times. All of a sudden she took a deep breath and then her body started making a wave, dolphin like motion. I SWEAR! I could hardly hold in my laughter. I just wanted to giggle, but it looked painful to me! Totally involuntary. The weirdest thing I have ever seen! He then moved over and worked on the nanny. Same thing except she was crying quietly and making the wave motion more intensely. Caleigh started to fuss a bit so I told him that we would go back in the waiting room.

Eric looked at me and said "where on earth did you bring me?" A VooDoo Doctor??? We were both freaked out and confused at the same time. So he finished up with them. The woman came out and asked if we were thinking about coming regularly. I asked her if it hurt and she said "oh, no just the opposite." Everyone we saw there 'looked' normal, whatever normal is. Eric swears they paid actors to come in......So everyone left and he came out to talk with us some more. We talked about Caleigh. He told us some 'miracle' stories. Told us that this was a "little miracle shoppe." He said "I'm good at this, I've done this all over the world.......I'm not gonna toot my own horn or anything." Ummmm.... isn't that what he was doing? We were still waiting on his partner to come. You know the one that is supposed to be great with children? So he asked Eric if he would come back and started on him. I stayed in the waiting room with Caleigh and then the woman came in. She was so excited...bent down....and started kissing Caleigh all over her face! I almost lost it! I don't know her, I'm a germaphobe, AHHHHHHH!!! So she stands up and ushers us into the back room. She was a small Filipino lady...spastic but seemed nice. So she started the touches. Caleigh immediately started crying and arching her back. It was a different cry, tired and sad. My back was killing me from holding her while she was arching so bad. I looked over at Eric still on the other table and he wasn't budging. No wave. The man was working so hard! So the lady says that crying is good, it's a release and that the arching is letting the release happen. Caleigh always arches when she's upset. So that didn't sell me on anything. Then she starts talking about the heat release that Caleigh is having. I was burning up and so was Caleigh. She was crying.....she's gonna be hot. She talked about how loose her spine was getting? Wanted me to feel of it......I don't know what a spine is supposed to feel like! So this went on for awhile. Every time Caleigh would calm down, they would touch her and she would start crying again. So finally Eric was done, nothing happened with him. He did seem more relaxed though. So the man started working on me. I sat down on the table, he did a few touches. I giggled a few times. I don't know if it was from the touches or the fact that we were still there enduring this. What did I get us into???? So I laid down on my stomach he did some touches. I felt relaxed don't get me wrong, but my mind was racing about the whole situation. So then he had me lay on my back. I don't even remember where the touches were but all of a sudden I started laughing.....a lot! Uncontrollably, laughing! Then it turned to tears, crying. WEIRD! In my mind I was telling myself to get control, but I couldn't. So eventually I dried it up. I could tell he was excited and he asked me to lay back on my stomach. I did and felt these huge breathes take over. I didn't do the 'wave' but I felt tingly all over. Did I mention it was WEIRD!!!! So we got done. Packed up, put our shoes on and started talking price with him. Oh yea, the lady, she was gone by the time I got off the table. We left and walked outside. Shook our heads, laughed a lot and loaded Caleigh in the car seat. I sit in the back seat with her, so I went up to the front seat to get medicine out of the ice chest. When I looked back, Caleigh had her hand in her mouth! I said something about it and it startled her so she took it out. She hasn't really done that before! She's really been trying though. So we stopped and ate at Cafe Brazil..mmmmm....yummy. We took Caleigh inside, still in her car seat. I have some toys hanging down from the handlebar. We were sitting there and she started batting and grabbing at the toys. She did this for a long time and this is something she rarely does. I think I've only seen it a handful of times. Eric and I laughed and shook our heads again. What on Earth?

We are both sensible people. Eric is more skeptical than me, but come on!

When we got home Caleigh was babbling a lot more than she usually does. She went right down to bed. Eric and I were in a great mood. We stayed up till midnight laughing, joking and talking about the day. The next day we felt great, lots of energy. I can't explain it. Maybe it was all the laughter? So I think my problem with going back is actually the doctors. I really think our personalities didn't mesh and the fact that things aren't very germ free made me uneasy. So I started looking online and found a lady in Arlington. I talked to her and she only sees one patient at a time which is much better. Her price is cheaper and she didn't feel the need to toot her own horn! We have an appointment on Tuesday and I really hope that we connect.

A little history.....When I lived in Florida, I was having bad migraines. No one knew why so I was on a ton of medicine, had tons of MRI's and CT's. I also went to Physical Therapy. They used some muscle contracting probes and heat. They would put them on my neck and leave me in a quiet dark room. I would cry and laugh uncontrollably. It was weird but they told me that it had to do with my sympathetic nervous system. This is exactly what I was feeling except on a milder level. It was relaxing nonetheless.

Ok, so that was my short-long story. I'm not sure where we are going to go with this therapy. Money wise we are trying to pick the best bang for our buck and of course the best for Caleigh. I think we will try it out a few more times and see how we all feel. If it helps to relax us as a family, I'm all for it.

If anyone has tried this let me know! We were told it is great for back pain, herniated disks, knee trouble, depression, anxiety...pretty much anything. If you want to try it, I can get you in contact with the right people. More details after our appointment on Tuesday!

9.04.2008

Your 10 month old: Week 2

This week I have been feeling a bit down and out of touch. It all started with an email. You know the type, you might have even signed up for them with your pregnancy or child. The "your baby is this old ____ & this is what he/she is supposed to be doing ____." I had signed up for one during pregnancy and it was delightful to see what was developing week by week. It was great for excuses too. "Oh sorry, I'm tired....the baby is developing earlobes today.....maybe tomorrow?"As soon as Caleigh was born so early, I quickly started erasing them before I could even read the first line. It wasn't fair that my baby wasn't in my womb anymore and I definitely didn't won't to read about what she 'should' be doing. Somewhere along the way I signed up for another one and I entered in Caleigh's original due date which was Nov. 1 2007. This would give us something to judge her adjusted or corrected development by. For a long time Caleigh was right on target, even a little ahead at one point. I again enjoyed reading these brief informative emails. Gradually she started to fall behind. The reality of Caleigh's brain injury and bowel issues holding her back became apparent. Plus, the 6.5 months in the NICU didn't make things easier to swallow. I slowly started deleting the emails. At first I would read them, think about what Caleigh was doing and then delete. For the past 4 months I just erase before reading them. Somehow if it isn't sitting in front of me in writing....it isn't true.

So early this week I got one of 'those' emails. I could have sworn that I made it junk mail, but somehow it got through. For some reason I stopped to read it. Maybe it was the cute photograph of a baby or maybe just curiosity again. This is what I read:

Your 10-month-old: Week 2

How your baby's growing: At this age, your baby can sit confidently and may even walk while holding onto furniture, possibly letting go momentarily and standing without support. She'll take steps when held in a walking position and may attempt to scoop up a toy while she's standing, too. Those magical first steps toward independence — and lots more exercise for you! — are just around the corner, if they haven't arrived already. Most babies take their first steps sometime around 12 months, but some start much earlier. If yours isn't walking yet, don't worry — it's still early. Some babies wait until they're 18 months old to make that move.

I love the "don't worry - it's still early" line. The whole update made me sad. Sad, upset, angry and down. I officially went in and deleted my account. No more updates. No more expectations. No more accidental readings. No more them. Just Caleigh. Caleigh's pace, nothing more. I'm feeling a little bit better tonight. Still, dealing with the reality of our lives now is hard sometimes. Every now and then we hit these hidden bumps in the road. They come up unexpectedly but we can push them away just as easy. No more expectations.

~~~~~~~~~~~~~~~~~~

Caleigh has been doing ok. We've had a bit of a set back with her stools. Really hard this past weekend to nothing but liquid now. Can't seem to have a happy medium. We started Xifaxin for bacterial overgrowth and it seems to be helping but we have only been doing that for 2 days. Caleigh's feeds are up to 23ml an hour. We are still working on a twice a week increase and so far so good. Today we had our second Feldkrais appointment. It went well and Caleigh seems to be really happy after the session. She works on Eric & I when Caleigh needs a break. An added bonus that felt nice. We also went and tried out another therapy called Network Spinal Care. It's an alternative for Chiropractics. More about that later........We brought Caleigh home and I fed her some carrots, which seems to be her favorite. No fruits or anything sweet. She loves the veggies best. Caleigh takes big bites now, but doesn't want to take too much because she just isn't hungry. Being fed 24 hrs a day doesn't leave a lot of hunger time. She eats what she wants. This is usually a tablespoon or two. We practice daily and she seems to be doing really well with it. Pretty soon she will be eating pizza & steak with the rest of us!

9.03.2008

Numbers

Caleigh's first year has been full of numbers. Some good, some not so good but all apart of Caleigh's first year nonetheless. Here's the run down.....

28 weeks

2 pounds 2 ounces 14.5 inches long

260 long days in the hospital

105 beautiful days at home

9 Bowel Surgeries

3 Central Lines

3 Hospitals

2 months total intubated time on the ventilator

Over 5 Million Dollars billed to our insurance company. They stopped showing us a total in February. So you can probably add a couple million to that number.

365 Bags of TPN

4 EEGs

3 Complex Partial Seizures in 30 Minutes

6 Holidays in the Hospital

2 Neglected Dogs at Home

Less than one 8 oz. Bottle of breast milk

7 G-buttons

1 MRI

1 CT Scan

Over 100 x-rays & contrast studies..... we lost count

Numerous Blood Transfusions.....we also lost count

1 plane trip

2 states

9 Primary Doctors

7 Synagis RSV shots

33 STEP Staples

Initially 42cm of small intestine

In December the small intestine had grown to 96cm

In June the small intestine had grown to 160cm

After the STEP Procedure there is more than 250cm of small intestine

Millions of Kisses on those chubby, chunky cheeks!

9.02.2008

Special Exposure Wed. - VOTE!

I'm so excited to announce that our little Caleigh is a finalist for Special Exposure Wednesday's photo contest.

VOTE, VOTE, VOTE.....
Practice your voting skills for this November with a friendly vote for Caleigh!


What is Special Exposure Wednesday? You can read all about it here.

"The winning photo will be featured on the large and small version of the Special Exposure button. Imagine, your photo brightening blog sidebars and posts throughout bloggyland. The new blog button featuring the winning photo will be added to our "Link to Us" page of button codes along with photo credit for the winning photographer and a link to your blog (if the winner is a blogger)".

This is what it looks like now......
5 Minutes for Special Needs

This is what it should look like........



So get out there and show your love for Caleigh! Plus, take some time to look around at the great articles and cool kids.

Special Needs Blog

What's in Her Diaper?

This whole post is about Poop! So if you would rather not read about it......divert your eyes.

As planned we weaned Caleigh's Imodium down by half starting Friday night. We expected her stools to get looser......didn't happen. So we stopped the Imodium on Sunday...expected her stools to get looser......nope, didn't happen. Caleigh's stools have been tiny and hard. All Type 3 on the Bristol Stool Chart. Last week she was having nothing but Type 6's. So this is a big change. An uncomfortable change. I've had to do rectal stem half a dozen times just to get a tiny dot out and just this morning used a glycerin suppository, which produced some Type 6.

So what the heck is going on? Stop the Imodium and stools get thicker. That's just the opposite of what should happen. I'm calling our GI doc this morning to get some advice. Other than that, the whole situation just shows us that Caleigh's gut is still complicated. You never know what will happen next! She could start laying eggs at any minute!