Too Complex

That's what they said after the 3 hour feeding clinic evaluation. Caleigh is too complex. Too difficult a case. So they gave suggestions for our at home therapists to use and they want to see her back in 6 months. They think that her eating trouble is neurological. She's not ready to eat and doesn't know what she is doing. Of course they decided this after seeing me give her 3 bites of green beans and 2 drinks of water. I definitely think that her brain injury is apart of the problem, but I also know that she was eating by mouth a few months ago and gaining weight. It wasn't easy but she was doing it. Caleigh didn't have anything by mouth for the first year of her life. I believe that is a huge part of the problem. We are on the list for the intensive day program. That's the 5 day a week program. This waiting list is 6 months long. I'm glad we went to this evaluation because it got us on the list, but at the same time it's hard to hear someone tell you that your child isn't ready and they can't help her. So I guess OUR goal is to get Caleigh to eat again somehow. Why count on other people to get her to eat. I honestly just wanted another opinion, some pointers, an answer. All I got was another failure appointment and more frustration. This isn't the first time we've heard someone tell us that Caleigh is too complicated for them. I wish it was the last, but my suspicion is that we are only in the beginning of our journey.

We're In

I just got Caleigh to bed and finished off the last of 6 loads of laundry. It's been a restful day. No therapy and no visitors. We laid around in our PJ's and hung out on the back porch before the cold front came through this afternoon.

Caleigh is finally acting like herself again. We had to stop the blended diet on Wednesday. Caleigh's belly was huge and hard. She was stooling like crazy. Listless, not smiling, not babbling and she was very floppy. She wasn't herself at all and it was worrying us. So we switched back to the Peptamen Jr. and she has slowly gotten better. Caleigh's belly went down in size dramatically the next day. The thought was that she was having trouble digesting the new foods. So the plan is to add one new ingredient per week to get her guts adapted to the new food. We will probably start this next week.

Ok, so for the big news..... I got a call from the Baylor feeding clinic yesterday and after filling out what seemed like 50 pages of forms we are set to have an evaluation on Monday. So, we're in! Apparently there was a cancellation. So we don't have to wait till the first of June to get in. We'll have to go over details when we get there, but we may have to start out going 2-3 times a week for 30 minutes. From what I understand the intensive program is 5 days a week for 5 weeks from 8-3. They only take 3 kids at a time so that is where the waiting list comes from. We'll figure it out, but I'm glad to have our foot in the door.

On March 13th I actually put Caleigh in her own room and in her own crib to sleep. I decided it was time to stop the co-sleeping because I wasn't sleeping AT ALL and I felt horrible. Every little wiggle or move woke me up. Eric snoring, Caleigh wiggling....I didn't have a chance. I wouldn't get into that deep sleep that everyone definitely needs to survive. I would 'think' I heard something and reach over making sure Caleigh was still breathing. I bet I would do that at least 6 times a night. I had gotten to the point that I was so tired that I couldn't sleep. That's bad. I was basically on the edge of a sleepy time nervous breakdown. I still go and check on Caleigh throughout the night, but the fact that I have to get up to do it makes it happen less and less. It's been going great except the past few nights where teething has been the culprit. Eric and I officially have our adult bedroom back. I enjoy reading in bed or checking the net without having to be quiet or keep the lights off. I loved co-sleeping, but at some point you have to say stop.

Tomorrow, Eric and I will be gone all day attending a Dave Ramsey lecture. I love all things Dave Ramsey and his budgeting advice has really helped us since Caleigh joined the scene. So I'm excited to have an adult day out of the house.

Tomorrow is also the NICU reunion. We are going to play it safe this year and skip it. I wish the hospital would schedule it for May. I think it would be better for all the kiddos. (hint, hint to our hospital friends) We'll miss seeing everyone and hopefully we will be able to come up to the hospital to visit soon.

Just a Moment

{I love me some baby arm rolls}

I have just a minute to post. Eric took Caleigh down the street to the fire station this morning to check her blood sugar. As soon as she woke up we got her in the car and off they went. Hopefully everything is fine. We needed to check it while fasting. When we did labs a few weeks ago she was being tube fed and her glucose came back 154. We still have those orders to do more labs and hopefully we will be able to get those done this week.

I'm sure my friends will get a kick out of this.... A few weeks back I signed up for a local diaper service. I always wanted to do cloth diapers with Caleigh, but never had the chance to try them. I don't have the time or energy to wash them so when I found a service that would pick them up and wash them...I was really excited! That excitement lasted a week. Short Gut Kiddos who go through 10-16 diapers a day (lately anyways) do not need cloth diapers. Kids who have nothing but liquid stool, do not need cloth diapers. I gave up quickly. I forfeited, ran away, through in the towel. Eco-this, Green-that, bum-tastic..... Cloth diapering wasn't for us.....what can I say? YUCK!

We've lined up renting a soft hyperbaric oxygen chamber (HBOT) for July. Being in July is a good thing. We're doing way too much right now and introducing something new would lead to my eventual nervous breakdown I'm sure.

Caleigh's new blended diet is going well. We've had a few bumpy spots to deal with while getting it started, but overall I'm happy with the results so far. Making stews and blending food like crazy seems to be my new hobby. Oh, and changing diapers. Eric and I made a weeks worth of stew on Saturday and it took a good half day including the blending. It's been a lot of work, but I'm hoping it will give Caleigh the nutrients that she needs and the good stuff to help her brain.

Interview Time

It's up...go check out my interview over at 5 Minutes for Special Needs.

Cerebral Palsy Awareness Day

Yesterday was Cerebral Palsy Awareness Day. We were supposed to wear green in support of the day. Well, I missed it. We were gone all day and I had no clue. Next year I will be ready though. Here's some information about cerebral palsy.....

- The average prevalence of cerebral palsy is about 1 in 278 children.

- Cerebral palsy is one of the most common developmental disabilities in the US, affecting at least 800,000 children, adolescents and adults in America. Cerebral palsy is NOT a disease nor should it be considered one. It is not even a simple or single disorder but rather a broad range of disorders that disrupt a person’s ability to move, sit, stand, walk, talk and use their hands. The severity of the movement disorder and the type of movement difficulties can vary greatly. Some patients have only mild difficulties with balance, walking and fine motor skills while patients at the other extreme are completely trapped in their own bodies, fighting rigid limbs, and unable to speak or swallow.

- There is currently no cure for cerebral palsy and in most cases, it is not preventable. In over 50 years, treatments for CP have not progressed much at all. In fact, today, there remains little consensus among medical professionals regarding what causes CP or how best to treat it. Why do 800,000 or more Americans have CP, and yet we don’t know much more about what causes it or how to prevent it than we did a half century ago?

Resources: Centers for Disease Control (CDC) and Reaching for the Stars (RFTS)

I found out about CP Awareness Day over at Life of Logan. They are having a contest to help spread the word.

Busilooo

All is well. We are so busy with Caleigh's new diet that I haven't had much time to post. I still don't really have time.

Things are up and down with the feedings, but this was expected with Caleigh's gut issues. I'm loving the idea of real food and I actually feel a little more like an involved parent by making Caleigh's food. Something about that natural need to provide for your child. It's fulfilling.

I went to see an acupunturist today and I really enjoyed it. Not much to say really, but I'm going to add it to my 'things to do for myself' list. It's a short list....

The March for Babies is exactly one month away. Sign Up Now! Or Donate what you can!

Short and Sweet. I promise more details soon!

Off Switch?

My brain just doesn't stop moving and thinking. One researched thing always leads to another, which leads to more questions which leads to another thing. So can anyone tell me where the off switch is?

From crazy doctors to hyperbaric oxygen therapy. My quest to 'fix' Caleigh continues on. I know that I can't correct what has happened, but I feel the need to do everything possible.

Many people have commented about stem cell therapy. I had researched the process throughly a few months ago. China is doing the most extensive programs with stem cells for cerebral palsy. I'm not comfortable with the process and progress of these programs, as of yet. I think there is plenty of work and research to be done in this area. This is just my opinion. Due to Caleigh's gastroschisis and urgent bowel surgery, saving the umbilical cord stem cells at birth wasn't an option for us. If anyone is pregnant and reading this SAVE YOUR CHILD'S CORD BLOOD. There are many companies doing this and the expense is completely worth it. Duke University is working with infusing a child's own cord blood stem cells and the results have been wonderful for children with brain injuries and leukemia. If you are reading this and you have a child with a brain injury. Duke University will store the cord blood of subsequent siblings in hopes of future research with sibling cord blood. If Eric and I had another child, there is a 25% chance that the new child's cord blood would be a match for Caleigh. The research just isn't there yet in the United States. I'm hoping this will fall into place soon. Just think of the possibilities?

I've been researching hyperbaric oxygen therapy, homeopathy, natropathy, suit therapy and the list goes on and on. I need to take a BIG chill pill. Take a deep breathe and stop. I think one new thing at a time will suffice.

That one new thing just happens to be a new diet for Caleigh. Blenderized diet to be exact. Nutrition, Brain Food and not yucky formula from a pop top can. You are what you eat, right? I'm really excited about this project and I can't wait to fill everyone in on how I found it.
Yes, this is an angry cry picture, but can you see those teeth? Caleigh has another molar coming in, but still no dice with the top front teeth.

We have had a really good week. The weather has been just amazing. Eric and I worked on the yard and garden a lot this past weekend and Caleigh enjoyed her sunny time outside.

The cranial band (not pictured here) seems to be working well to round out her head shape. There is still work to be done, but for now Caleigh only wears it at night. We go for fittings every 2 weeks and that is getting to be old. I'm pretty sure it is wearing off some of her hair in the back. Hoping it grows back soon.......

Today I got orders from our GI doc to do another swallow study and a script for Baylor's feeding clinic. I'm excited to be moving forward with this. I also ordered a new adaptive cup for Caleigh. The Infa Trainer Special Needs Cup is a good step after the bottle and before a regular cup.

Last week we took Caleigh to LabCorp and had labs drawn. Some things have come back a little off so we have orders to repeat these labs. Hopefully we can fit this into our schedule sometime this week.

Caleigh's head control is getting stronger and she can now sit unassisted for ten seconds. She has also started inching, very very slowly, her way on the floor to get to toys and us! WhoooHooo, Caleigh! Way to go, baby girl!

1 long year ago

Eric and I we're itching to bring our baby girl home and that's exactly what we did 1 year ago today. March 5th will forever be branded in my brain.

6 months 2 weeks and 5 days.....29 weeks....201 days Caleigh, Eric and I lived in the NICU. I remember the day we brought her home so well. It makes me tear up as I type and think about that day. Eric and I joyfully arrived at the hospital around 9am. We didn't make it home until 7ish that night. It took a long time to discharge.....it takes a lot to send a baby home on TPN. We had to go by the pharmacy to pick up a sack full of meds. We walked in the door and hit the ground running and haven't looked back since.

Of course there were many details, but overall, the entire day was filled with joy and tears. We we're scared bringing home a baby that was so sick, but we knew that we could take care of Caleigh.
{Our little nugget, all 5 pounds, first time through the door}

It's been a long year. Ups, downs, prayers, tears and laughs. Caleigh has taught us so much and we are pretty sure this is just the beginning of our education.

Happy Homecoming Anniversary!

The Not So Miracle Doctor, or at least I think

Eric and I went to our appointment with the highly recommended Ear Nose and Throat doctor today. It was suggested that we not bring Caleigh to the first consult appointment so that we could go over her history and talk about options. So Caleigh stayed at home with the grandparents while Eric and I had our outing.

Let me just point out here that I'm open to anything as far as treatments for Caleigh as long as my gut and instincts are telling me it's a good idea. Obviously we would never put Caleigh in harms way. I'm also very open to alternative therapies. My brother lovingly (I think?) calls me a tree hugger. I've made my own house cleaners for the past 4 years. I love all animals. Throw it at me....I'm down.....

So when the fairly odd eye doctor suggested we see this new doctor, an Otolaryngologist, I was ok with it. Why not? When I called to make the appointment, his staff sent me a new patient packet filled with info. He is affiliated with a reputable local hospital. Apparently, he is a founding member of the Defeat Autism Now campaign. He takes a complete metabolic approach to each patient. From what I've heard he has varying results.

Our first appointment, the consult, cost us a hefty fee. He explained his practice which uses more Eastern medicine than Western. So he suggested we start off with labs to get a baseline of where things are. Here's where the problems come in.... He doesn't take insurance, our insurance wouldn't accept him anyways. The labs he is wanting, hair sample, complete blood tests, allergy tests, would end up costing us a fortune. After these tests are in, he talked about getting Caleigh to eat good food (good luck guy!), different supplements, injecting Flora or good bacteria into the intestines and he even mentioned a smige about stem cell therapy & Mexico.

The whole time he was talking I felt odd about him. I could tell he was a well educated man. I just couldn't read the situation. Usually I can tell if we are talking to a quack or not. This time I was guessing. So we made it through, paid and made the next appointment a week from now. When we got in the car I still couldn't decide how I felt about the situation. I knew it was going to cost a lot and that's about the only thing I knew. When we got home I looked at Caleigh and decided right there that we weren't going back. First of all, who consults about a patient without seeing the patient? After a little Internet research, I found good and bad reviews about the man. The general complaint I found was that he cost too much and pushes supplements to make his big bucks. Some said he was a great doctor. He apparently is very cutting edge in the Autism world, but (fortunately for us) I know nothing about this subject so I couldn't tell if there was progress made with his patients.

So tomorrow I will call and cancel the next appointment. I figure the first appointment was so costly probably because people don't always return after hearing the sales pitch. I'm not saying he is a bad doctor. We don't know that. I have that feeling though. So I feel like he isn't a fit within our family.

I will say that I have come to trust little that is out there for kids like Caleigh.
It's a shame that there are so many schemes aimed at desperate parents looking for a cure. It's hard to trust. Too bad there isn't a handout, or a road map once your kid gets diagnosed. That would obviously make life a little too easy......

So we're on to my next find. Hopefully we will have more luck with it!