And so it begins

Our trip down special needs equipment lane has started. I've been holding off. Mainly because if it doesn't happen, it isn't real, right? Well, it is. Now that Caleigh is getting more active her weak areas are showing up and now is the time to start treating those.

So to start with, our PT has ordered a Theratogs Suit. This will replace the Kinesio tape that we have been using. Just like the Kinesio tape, Theratogs give a little stretch and feedback to each muscle group targeted. The Kinesio tape has been irritating Caleigh's sensitive skin. So I'm excited to be getting rid of it. We will be getting a full body suit, but will probably only use the tank top and arm section of the suit at first. It will go under Caleigh's clothes during the day. Hopefully we will get it within the month.

The next thing that is being ordered is a hand splint for each hand. When Caleigh is working really hard, her spastic tone kicks in and her hands make a tight fist. We do stretches everyday to keep this pattern from 'sticking.' We tried a glove on for size today and it was really cute and so tiny. They are called pediatric gloves and we get to pick what color we want. I haven't decided if we want pink or purple. These gloves will give Caleigh more use of her hands during the day.

We had also ordered a fabulous, normal, new, & expensive high chair for Caleigh. So fabulous in fact, that it didn't work at all. I was bummed. This led me to face the music and go for something more supportive. I researched for what seemed like forever, but I finally decided on the Special Tomato Soft Touch Sitter. The harness and adjustable seat will hopefully make meal times easier. And maybe, just maybe, Caleigh will sit in it to eat. We should be getting the new chair somewhere around mid-February.

This past week we made another visit to the cranial band office. No changes were made to the band. Caleigh mainly wears it while she is sleeping. About 13-15 hours a day instead of the 23 hours they want. It still falls in her eyes when she is on her tummy. So I've given up on trying to make it stay. She may have to wear it longer this way, but our sanity will stay fairly intact.

We also made it to our 6 week GI appointment. Everything is going so good with Caleigh that the appointment was mainly a chance to catch up on what's been going on. Caleigh is now 50th percentile in weight and 15th percentile in height. Our goal is to slowly grow and gain weight at a normal rate now. We discussed calories and fluid intake. Caleigh needs 600 calories a day and 900ml of fluid per day. Her fluid intake was considerably lower, but she wasn't showing any signs of dehydration so I didn't think to much about it. All last week we were having issues with feeding, as you could tell through my last post. We started Caleigh on a fluid program with half water half pedialyte a few days ago. The changes are just amazing! Caleigh actually wants to eat and her fussiness is gone. What I thought was teething really ended up being a dry baby. Her mouth was moist and she was having good wet diapers, but she just needs more fluids. The life of a short gut kiddo. I guess I would be cranky too if I was thirsty. This means that Caleigh is hooked up to her feeding pump more throughout the day than she has been, but the results are worth it. A wet baby is a happy baby.

Food Face

The quest to conquer baby food and solids continues on. The process starts out so happy and carefree. Lots of smiles and giggles.

This is what Caleigh ate for lunch today. Vegetable Beef Pilaf with Semolina Pastina added for calories and texture. 6 whole ounces, 170 calories, an all time record!

Of course, this meal was heated to the perfect temperature for my little diva. I always let miss priss smell her food before giving the first bite. I say 'bite', she barely opens her mouth for fear of what is about to enter. The first bite usually results in a 1-2 minute gag fest. This ultimately results in spiting up the tiny amount in her mouth. At this point all happiness is off the table. I proceed with a smile, while holding and making faces at my little princess. Sadly, for my wardrobe & hair, Caleigh has learned how to ever so slightly spit and spray food. This usually starts about half way through the feed when, I can tell, she gets bored and aggravated. I look very interesting by the end of the day. I fly through such songs as, London Bridges, Jingle Bells, Rudolf the Red Nose Reindeer, The Ants Go Marching In, and Caleigh's all time favorite, The Wheels on the Bus; where I might add, everything is 'in' the bus. This includes cows, cousins, & chickens.....anything to make the song longer. I bounce and sing our way through 3/4 a feed. This is where it gets sticky. The lower lip comes out. The pouting begins. The whining starts. This week I found out that Caleigh understands 'No' and the tone of voice I use to 'mean it.' She dried up those whiney tears and mustarded up enough strength to finish the meal. There are tears of I don't wanna, and you can't make me. There are also attempts of falling asleep during this portion of the feed. All I can say is little miss thing is getting good with her tactics. A little too good.

Caleigh's empty lunch bowl.

The defeat of a 17 month old who hates to eat.
Not too bad for a kid that wasn't eating by mouth 4 months ago. I'm praying it gets easier and that one day she will enjoy the process of eating. I've got my fingers crossed too!

Updates

Things are relatively moving along great with Caleigh right now. She is eating more and more each day. We are up to about 5 ounces of food each feeding. Practice does make perfect. I feel like all I do is prepare food and feed Caleigh. Don't get me wrong, I'm not complaining, I've been dreaming of this day for a long time. We've been out at appointments or visiting family here lately during feed times. Caleigh doesn't do as well in these situations. Our regular routine seems to work better for her, but I guess all kiddos get distracted when the routine is broken.

I've had so many requests asking how we got her to eat and drink from a bottle. Apparently we aren't the only ones out there! So here's what works for us. You may recall, Caleigh took a pacifier for the first 6-7 months until her abdominal distention and reflux became too much. Every now and then we will give her a pacifier and she will take it. It's not a staple though. We have also always touched, kissed and messed with her face and mouth. I think those two things have a lot to do with our success. With Caleigh I mix a lot of food together. It's gross, but I read that kids don't have the discrimination that we do against certain foods going together. Caleigh does better as she gets used to the taste. So switching foods in the middle of a feed doesn't go so well. There is still a lot of gagging and retching, coughing, & tongue blocking. It's not perfect. Caleigh doesn't like fruits. I know, probably the only kid out there! I hide the fruit in oatmeal, rice cereal and even in vegetables. She also likes everything to be heated up and refuses anything cold, including her bottle. Give Caleigh something cold and you've got a huge retching situation. Texture is also a biggy. She likes to chew even though she only has two teeth. We've started stage 3 foods with pasta and small chunks. I also mix half a hard boiled egg in her lunch everyday. She prefers things that are thick & chunky compared to smooth liquids. The biggest thing that we will have to overcome is the fact that I have to hold her while I'm feeding her. I've got it down pretty good, but it would be a lot easier if she would eat in her high chair. A new high chair is on order. One with better posture and a tray that will fit around Caleigh's tummy. I'm praying this will work. My back and arms are praying it will work too. When I started feeding bootcamp a few weeks ago, it would take Caleigh about an hour to finish about 3 oz of food. Now it takes about 30 minutes for 5 oz. It's getting better. Also, I sing a lot or have music playing. Distraction is key to feeding time.

Caleigh once again lost a few more grams this week. I put in a call to the GI doctor and their dietitian called us back. I was worried Caleigh might be needing 900 or so calories a day so I wanted to make sure the 500-600 I was giving her was a enough. It was enough. Anywhere from 550 to 600 calories until we go for our next appointment in a few weeks. Caleigh is getting taller too and her hair is growing like crazy. I think she is more active wiggling around so that has a lot to do with the loss.

I know everyone is wondering about Caleigh's poo {sarcasm} I haven't talked about it in a long time! Caleigh's stools vary greatly. She still has 4-8 bowel movements a day, but the consistency really depends on what she eats and how her body reacts to it. She hasn't had a diaper rash in a really long time. All signs that things are working like they should.

Caleigh's development is slowly getting better. She's making lots of noise and putting different sounds together. Still no mamamama or dadadadad but she can definitely get our attention! She can roll from her tummy to her back with more ease now. It's hard for us to keep her on her tummy at times, but she really enjoys tummy time now. She still can't roll from back to tummy. Caleigh's head control is increasingly better since starting tummy time. Visually she seems to be seeing better and her strabismus isn't as strong as before. The only time I really notice it is when she is tired. Caleigh's balance is still off for sitting independently. In the right position she can sit unassisted for 30 to 60 seconds. Caleigh's main struggles right now are in her shoulders to elbows. It seems hard for her to work through the tone in her arms. Enough so that she has so much trouble bending her arms. When relaxed and really concentrating she can do it. She has even been able to put her hands in her mouth frequently recently. It takes a lot of work. Teething is great motivation. So we are all hoping that over time she can find a way to work through it. Reaching for toys doesn't happen in a tummy position, but she has been using her arms in a seated position to grasp toys.

In an effort to stimulate Caleigh's vision I bought a kit from The Institutes of high contrast flashcards, large type word flashcards and checkerboard posters. Caleigh loves them and we surround her with them all the time.

It took three people, but Eric, Grandpa & I finally pieced together an incline ramp for Caleigh. The thought process behind the incline ramp is this: a newborn is light weight and any movement the newborn makes causes he/she to move triggering a connection in the brain: Hey, when I move my arms and legs I move forward. Caleigh is 22lbs and when she tries to move her arms and legs she doesn't go anywhere. Gravity is against her. Making the connection in the brain: Hey, when I move my arms and legs I don't go anywhere, why should I move them? So the incline ramp gives Caleigh the chance to move forward with any movement she makes. She has great alternating movements with her limbs. It's been working and she really does move down the ramp. Our goal is to do this at least 10 times a day.Starting Line

Half Way There
Finish Line

Emerson Call for Action

Little Emerson

I know many of you keep up with little Emerson. She is such a fighter coming back from the worst several times since her transplant. During the recent month Emerson developed complications resulting in the removal of 90% of her new transplanted bowel. She now needs another transplant to survive. Here's where the action comes in. Emerson's home is in Colorado, she is being treated in Nebraska. Because she has been in Omaha for so long, Colorado Medicaid is dropping her. Caleigh's medical bills topped 5 million after 6 months in the NICU. So I can only imagine what a transplant and ICU stay has cost. They have met their life time max for their insurance. Medicaid is all they have. When we took Caleigh to Pittsburgh for a transplant evaluation they had to have financial approval from our insurance and our medicaid for the transplant before they would even do the eval. It's the same thing with re-listing Emerson for a 2nd transplant. She has to have medicaid to have the transplant. Without the transplant she will not make it.

So here's what I'm asking. Go on over to Emerson's journal and read what her mom (Erika) wrote. She's asking that all of us write an email or letter to Colorado officials. She's listed the names and addresses of those important to the matter.

Emerson White

The Feeding Goes On and On

These past few days have been busy. After much contemplation, consulting with anyone that will listen and setting up our own schedule I decided we were trying to do too much. It takes Caleigh about 45 minutes to eat a meal and I was trying to feed her every 3 hours. Add that 45 minutes in there and I was attempting a feed every 2 hours! No wonder she wasn't cooperating. So I talked to a few friends with normal developing children and asked what their schedule was. I talked with a few short gut parents and decided that every child is different and every meal isn't always a success. Sometimes kids don't want to eat. So here is the schedule I came up with and not on my own might I add....

• 7 am wake up and feed oatmeal 2tbs with 40ml of formula added + cinnamon, Give meds by g-button, drink 30-40ml of formula either by bottle or nosey cup
  

give juice and water between feeds

• 12pm 2 tbs meat with veggies & 2 tbs fruit, drink 10-20ml of formula by bottle or cup
  

juice and water between

• 4:30ish finish meat with veggis & fruit

juice and water between

• 7pm 125ml formula by bottle, what she doesn't finish in 30 minutes is given by g-button, give meds by g-button

• 10-11pm Formula by g-button to replace calories not achieved during day time feeds
  

• hot cocoa for mommy

Another development was the cup drinking. The cup is called a Nosey. The very first time we used it she drank in 10 minutes what took her 30 minutes with a bottle. We were impressed. So our speech therapist talked with collegues and did some research. Her thought is that Caleigh is passed the point of 'needing' a bottle. Meaning she doesn't need that comfort of sucking like a newborn does. Right now her comfort is with chewing due to teething. So we are going to start using a honeybear bottle and try to teach drinking from a straw.

Well, last night I was needing to get a few more calories in Caleigh before bed. I decided to add some rice cereal to her already thick formula (it has the smell, look and consistency of Eagle Brand milk). Awhile back I had accidently bought a pack of fast flow nipples. Eric and I laughed about how big they were and how huge the hole seemed. It came to mind and I decided to use them since I was thicking her already thick formula. Why not? What's there to lose? And wouldn't you know Caleigh started sucking and swallowing like a champ. She didn't drink as much as I wanted but the motions were great. I put her to bed and tube fed the rest. This morning I woke up fed her oatmeal and then tried the bottle once more. She did amazing, taking exactly what I wanted her too. I'm going to try again at lunch, but we may have found the right nipple for Caleigh. Finally. I still think it is important developmentally to learn to drink from a bottle. We will have to revisit this subject with our therapist on Monday.

I had questions about fluid input and calorie input. Caleigh is supposed to have 500 calories per day minimium and as far as fluid goes at least 800ml per day. It's harder to get the fluid in now that she is eating so much baby food. But I add water to the food, or juice for calories and formula to her oatmeal. Also we flush her meds with water. Giving her liquid between feeds is going well and she hasn't shown any signs of dehydration. Be sure to ask your GI doctor about your numbers. There is a formula to calculate this.

We go for a follow-up appointment with the Cranial Band people on Tuesday. The hat still isn't fitting well. We have a wonderful person to work with who is sticking up for our case. Apparently there was talk of 'not treating Caleigh' because it wasn't working. At this point in the process I am determined to make it work, so 'not treating' will not be happening if I have anything to do with it. As far as her head shape goes it is getting better. We have hopes of her getting enough growth that it will start to fit better. I can tell a difference and that is the only thing keeping me going.

I took Caleigh to the pediatrician this week because I thought she might have an ear infection. She was favoring her left ear and would flinch when she moved a certain way. After a quick look at the ears everything was perfect. The real culprit is teething. Apparently there is a nerve that runs from the ear down the jaw line to the gums. Kids sometimes think their ear hurts when it's actually their teeth. I also took Caleigh for our weekly chiropractor appointment. She had a little kink in her neck as well. So after the Chiro she hasn't been flinching anymore.

On to a happy note. I had a brillant idea the other day. Swimming! Caleigh can go swimming now that her central line is gone. I'm really excited about the therapy possiblities related to swimming. I haven't been swimming in two years since Eric and I went on vacation while I was pregnant. We may have to take Caleigh on a little trip to the ocean this summer! I'm so excited!

The New Year

Hopefully, my procrastinated post won't be a sign of things to come in 2009. We have been so busy. Last Sunday I woke up and decided it was time to really crack down on bottle feeding Caleigh. Lets just say it's been a really rough week. Baby bottle boot camp is going better than in the beginning, but I'm just plain worn out and so is Caleigh. Her suck is stronger and more rythmic although there is still a lot of work to be done. The amount of formula she is taking is getting better too. She gets tired because she isn't used to working all the sucking muscles. You would think that with those cheeks we would have it down! There isn't a formula to go by in these situations. No one says 'ok here's what you need to feed her _{enter food}_and when_{enter time}_. We do have a fluid volume that we need to reach per day for hydration purposes. We also have a calorie need per day for weight gain purposes. No one says 'here's how to get Caleigh off of g-button feeds __{enter specific & organized plan}__.' It's been driving me nuts, and now that Caleigh's central line is gone, I think it is a perfect time to concentrate on it. If anyone out there has tips and tricks they will be greatly appreciated.

With my loss of control with the feeding situation, I've felt the need to organize in other areas of our life. Cleaning things out, putting things away, but at the same time I am making a bigger mess for myself. I'm very far behind on thank you cards, laundry and sending baby shower gifts. Having a list of things to do sends me mad. I need to take a deep breathe and enjoy life.
I finally decorated Caleigh's cranial band. Eric was at the firestation and I spent New Year's Eve getting closer to my crafty side and with a good friend watching 80's movies. Uneventful but cozy. So here are the results. What do you think? I used fabric and decided to add a little bling. I'm open for business if anyone is interested {hehe}Ah, yes. It may be pretty but that doesn't mean it fits any better. We aren't up to the 23 hours of wear, and I don't even feel bad about it at this point. Not sweating the small stuff in '09.

2009 will be an amazing year for our family. Lots of postive thinking here. Caleigh will achieve more and more of her goals. Eric and I will work on settling into our life as parents of a child that isn't so sick anymore, but that needs special care in other ways.

We wish everyone a happy and blessed 2009