The Conclusion to a Wonderful Event

Team Caleigh 2009

The March of Dimes March for Babies was a huge success this year! We had a great time walking with all our family and friends. The weather held off just enough to make it comfortable. Caleigh had three diaper changes throughout the 5K. The last one resulted in a blow out and loss of clothing. Oh well, next year I will pack a spare outfit. Just another day in the life of short gut land. Caleigh started off in a great mood and when nap time rolled around there wasn't no stopping her! A successful March nonetheless.

I'm still waiting on a finally tally as to how much moola our team raised, but I can say the number is over $3000! It's just amazing! I want to thank everyone that walked, raised and donated. Until next year......

Texas Plexes Peas

I'm home safe and sound. I just put Caleigh down to bed. I missed her smell, her hair, her skin, her smile. I can now say I have a completely different outlook on our lives.

Hopeful.

I'm exhausted and my head is racing with possibilities and to do's. Once I collect all my thoughts I will post more.

Have a great weekend!

Philly Dilly Doo

I'm here. The schedule is crazy. I'm tired. Was this supposed to be a bit of a vacation? Uh, No.

I'm taking lots of notes. Jotting things down constantly so that I can do a summary post when I return. Promise.

Until then.

Calling all Carrots

So today I had to call off the carrot crusade. Caleigh had become increasingly constipated over the last several days. We had been adding about 150ml of carrots to a 24 hour period over the last 12 days. Her stools have become thick, and tar sticky. So once again we back off from the world of 'real' food and take a small break. It's so frustrating. What's a mother's job? Feed your child and keep them alive. Ok, that's basic, but really the mommy handbook doesn't say anything about popping the top of a can and pumping a weird milk like substance directly into your child's stomach. It just doesn't feel right. On the other hand, we are so blessed to have that can of weird white stuff and a way to feed our Caleigh. We are not defeated. We will start again after Caleigh's belly calms down.

Here's Caleigh getting some much needed Vitamin D (aka sun). We also added a supplement to her med list. This will give her 2000 IU's a day. We will check her levels again in about 6 weeks.

Today we had an appointment with the nephrologist. This is the kidney doctor that looks over Caleigh's blood pressure medicine. She has never been diagnosed with a kidney problem but due to all of her gut issues and TPN dependency, a nephrologist was chosen over a cardiologist. In the beginning no one could tell us why she had high blood pressure. They all assumed it was due to abdominal discomfort. Now that the discomfort is gone, Caleigh still has high blood pressure. So we are scheduled for a renal ultrasound to check her kidneys one more time. We are also scheduled for some more lab work to check her kidney numbers. Also, we are waiting to hear about a date to do a heart ultrasound to see if there is any damage or enlargement due to the hypertension. A lot came out of this appointment today and it made me feel a little overwhelmed. We will just have to take one test at a time, wait for the results, and go from there.

Saturday is the March of Dimes, March for Babies Walk. Team Caleigh has raised a whopping $1960 so far. I'm really excited to be seeing everyone at the walk. Don't forget to donate if you haven't already!

It's not a great picture, but if you look closely you can see Caleigh top tooth! It finally came in after what seemed like a 2 month teething spree! She got her new shiner after some dedicated, overnight, numbing gel and nuk brush scrubbing. Now we just have to get that other one in....

After the March for Babies on Saturday, I leave bright and early Sunday morning for Philadelphia. I will be gone for 6 days attending the lecture 'What to do about your brain injured child' at The Institutes for the Achievement of Human Potential. I'm a bit stressed running around getting ready to leave and making sure everything is in order before I do. I'm too much of a control freak to leave my natural habitat without any instructions or cleanliness. We'll see if the house is still standing when I return! All grandparents are scheduled, food has been bought, tomorrow is laundry day. Eric will be off work all week and I trust things will go well. He IS the best daddy in the world. So I have no doubts. I myself will hopefully be sleeping through the night for 6 days straight!

I probably will not post until I get up to Philly. Things are just to hectic right now. This is the first time I will be away from Caleigh....Wish me Luck!

So Over It

I woke up this morning refreshed. A sense of calmness and joy present. After the much needed cry and a few good nights of sleep I feel better. I think Caleigh decided to take it easy on me and only woke me a few times each night. It helped.Everyone's comments were great and I do realize that we are not alone in our journey. We have great friends and family...wonderful even. The notion that they are still around after everything that has happened is truly amazing. The truth of the matter is that we haven't been great friends back. We are absorbed with Caleigh and her needs 24/7. I try to make an effort to be the Holly that I used to be, but I know that she is forever gone. I'm over it for now, and feel much better today.

So...on to the official Caleigh business. We had a GI appointment yesterday and all is well. Caleigh's labs came back and the only thing off was her Vitamin D level. It's low. I'm waiting to hear back from our doctor on a plan. Normal range is around 33 and Caleigh's was 14. Recommended dosage per day is about 400 IU. Caleigh gets about 1000 IUs. So she's getting quite a bit. Vitamin D deficiency can cause soft bones, rickets and osteoparesis. Caleigh already has a history of fractures and soft bones due to her TPN dependency. Hopefully, we get this figured out and cleared up soon. She's doing so well in the GI department that we don't have to go back for another 3 months. What will we do with our time?

Today we got Caleigh's Benik hand splints. Unfortunately, they are the wrong kind. Apparently, there was a communication error somewhere between our OT the durable medical equipment company and the guy that came out to measure Caleigh's hands. I'm pretty sure it fell flat with the guy that came out, but we'll see. So our OT is in contact with the DME and hopefully we don't have to wait a long time before we get the correct ones.

About a week ago we got Caleigh's Theratog suit. That's it in the pictures. The suit takes the place of the kinesio tape that Caleigh has worn for some time now. This is a good thing because Caleigh's skin was having bad reactions to the adhesive in the tape. The suit gives Caleigh's muscles feedback when she is extending or being spastic. I wasn't the best about putting it on in the beginning, but the past couple of days I've really been on top of it. I think it is helping her bend her arms better and her hands seem more relaxed. I've seen tiny improvements in just the last few days, and that's exciting. The only down side is that the suit is tight and warm. So when we hit that Texas 110 degrees she may not be able to wear it for very long periods of time.

This morning I woke up ready to tackle feeding Caleigh again. I blended organic carrots into a puree and we worked on eating them before each feeding time. I held Caleigh, had the carrots very cold and the spoon cold as well. She did really well and took about 20 bites each time we tried. Tomorrow, I'm going to start blending carrots for her g-button as well. We are also going to feed every 4 hours again instead of the 3 we are doing now. Caleigh's swallow study is scheduled for April 28th and after we get that information hopefully we will know a little bit more. After the Baylor feeding evaluation I ordered a Z-Vibe sensory kit. I just got it in tonight. It came with a vibrating spoon that I will be trying out tomorrow. I told Eric today that I'm ready to battle with feeding Caleigh. I thought about it for a moment and then changed my mind. It's not a battle, it's not a challenge...it's a pleasure to BE able to feed my child by mouth. The fact that I CAN feed Caleigh no matter how much that may be is a miracle. Caleigh didn't eat anything for the first year so why do/did I have the notion that she should learn to eat in a few weeks? Patience young grasshopper....

Hibernation is Officially Over!

We are proud to announce that the quarantine of winter 2008-09 is over. I am so so very excited! To start it off this past weekend we took Caleigh to a beeping Easter egg hunt. I have to admit this was mainly for Eric and I. Caleigh isn't old enough to understand but I think it made for a nice Saturday morning. This egg hunt was for visually impaired children. They laid out large beeping eggs and surrounded them with normal plastic eggs. I could tell the older children were really having fun.

We bought Caleigh a pair of cool sunglasses to help with her sunlight sensitivity and to ward off the 'Oh, she's SO sleepy' comments. She still kept her eyes closed but it helped cut down on the glare.

They had an Easter bunny who was also visually impaired that we could take pictures with. Hmmmm..... I like that the bunny is wearing flip flops...my kinda bunny!

As soon as we got out of the car a woman came up to us asking if this was Caleigh?!? Eric's face was priceless. It was too funny! Jocalyn is Kendall's mom and she recognized us from Caleigh's blog. Turns out they live just down the street and we are going to get together soon for a play date. Their family is so sweet and it was great to talk with someone who understands first hand what we go through everyday. Kendall is such a sweet heart. You can read all about her at Kendall's Hope. I must say that the dads weren't too happy about the pictures, but I think they did great! What models they are....hehe.

Later that day we made it over to Stacy's babyshower. There was a lot of people there and I think I handled it well. I wasn't freaking out about germs. I honestly didn't think about it a lot. What I did think about was how different Caleigh is compared to the other children and what struggles we have as a family compared to others. This spring will be the first time that we will be getting out and experiencing life with Caleigh. I have a feeling that my emotions will be up and down with each new road that we cross.

That night I had a good friend's birthday to go to. I was already tired. Socializing all day long was more than I have done in months. It was a friend from college. Single girls hanging out, dinner and dancing was on the menu. I really wanted to do it. I want to do it all, like I used to. After dinner and then some bar hopping I felt like I was going to die. My feet hurt, my body hurt....I was exhausted. Plus, I didn't even have but one drink. Oh, and can we talk about the smokey bars. My head felt like it was going to explode! Granny land here I come! I didn't make it home till 3am. I felt guilty and like a bad mom. Eric was amazing. He took care of Caleigh while I was out and the next morning. Did I mention I feel guilty? Later that morning I had a total melt down. I have been hanging on by a thread for weeks. The whole feeding thing, therapy thing, retching, diapers, and I'm leaving in two weeks for The Institutes lecture. I lost it. Crying, boohooing, sobbing. I haven't slept through the night in 20 months. What was I thinking? My night out caused my exhaustion level to be sky high. It threw me off the cliff. I wish I had ended the night with dinner....maybe I would have made it a few more weeks. Although, I do feel better after the good cry.... I hate that I did it. I was throwing out the 'it's not fair' and 'why our daughter' routine. Ugh. I love my friends, I love my life before we had Caleigh, I love my life since having Caleigh, but I really don't know how to mix the two. I think this is all apart of growing old. We change, people change and sometimes that just sucks. How do you reinvent yourself gracefully while keeping those you love in your life?